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Mentally retarded adults in the community: social policy and the normalization of services for deinstitutionalized… Eni, Godwin Onuoha 1981

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MENTALLY RETARDED ADULTS IN THE COMMUNITY: SOCIAL POLICY AND THE NORMALIZATION OF SERVICES FOR DEINSTITUTIONALIZED ADULTS by GODWIN ONUOHA/ENI B.Sc.(Hons) The U n i v e r s i t y o f Ibadan, N i g e r i a , 1969 A THESIS SUBMITTED IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE i n THE FACULTY OF GRADUATE STUDIES DEPARTMENT OF HEALTH CARE AND EPIDEMIOLOGY We a c c e p t t h i s t h e s i s as c o n f o r m i n g t o t h e r e q u i r e d s t a n d a r d THE UNIVERSITY OF BRITISH COLUMBIA August 1981 Godwin Onuoha E n i , 1981 I n p r e s e n t i n g t h i s t h e s i s i n p a r t i a l f u l f i l m e n t o f t h e r e q u i r e m e n t s f o r an advanced degree a t t h e U n i v e r s i t y o f B r i t i s h C o l u m b i a , I ag r e e t h a t t h e L i b r a r y s h a l l make i t f r e e l y a v a i l a b l e f o r r e f e r e n c e and s t u d y . I f u r t h e r agree t h a t p e r m i s s i o n f o r e x t e n s i v e c o p y i n g o f t h i s t h e s i s f o r s c h o l a r l y p u r p o s e s may be g r a n t e d by t h e head o f my department o r by h i s o r h e r r e p r e s e n t a t i v e s . I t i s u n d e r s t o o d t h a t c o p y i n g o r p u b l i c a t i o n o f t h i s t h e s i s f o r f i n a n c i a l g a i n s h a l l n o t be a l l o w e d w i t h o u t my w r i t t e n p e r m i s s i o n . Department o f HEALTH CARE AND EPIDEMIOLOGY The U n i v e r s i t y o f B r i t i s h C o l u m b i a 2075 Wesbrook P l a c e Vancouver, Canada V6T 1W5 Date SEPTEMBER 12, 1981 ABSTRACT The purpose o f t h i s s t u d y was t o e x p l o r e the n a t u r e and c o n t e n t o f t h e s o c i a l p o l i c y o f " n o r m a l i z a t i o n " i n community based s e r v i c e s which have been used t o meet t h e needs o f de-i n s t i t u t i o n a l i z e d m e n t a l l y r e t a r d e d a d u l t s . I n the p r o c e s s i t was hoped t h a t d a t a would be o b t a i n e d t o a i d d e c i s i o n makers i n p l a n n i n g community s e r v i c e s f o r r e t a r d e d a d u l t s . The s t u d y was d i r e c t e d t o examine t h e r e l a t i o n s h i p between the l e v e l s of n o r m a l i z a t i o n i n s e r v i c e s w h i c h had been p r o v i d e d f o r r e t a r d e d a d u l t s who were d i s c h a r g e d from t h e P r o v i n c i a l i n s t i t u t i o n f o r m e n t a l r e t a r d a t i o n - Woodlands - under t h e m e d i c a l a d m i n i s t r a t i o n o f r e t a r d a t i o n s e r v i c e s as w e l l as a f t e r the assumption o f same r e s p o n s i b i l i t y by t h e M i n i s t r y o f Human Resources. These a d m i n i s t r a t i o n s r e p r e s e n t e d the m e d i c a l and the s o c i a l systems o f s e r v i c e d e l i v e r y . " N o r m a l i z a t i o n " had been adopted as " p o l i c y " soon a f t e r t h e t r a n s f e r o f r e s p o n -s i b i l i t i e s by the M i n i s t r i e s . Three areas o f c o n c e r n were examined: L e v e l s o f normal-i z a t i o n o f s e r v i c e s ; needs o f s u b j e c t s ; and n o r m a l i z a t i o n as p o l i c y . These a r e a s had been c e n t r a l t o p u b l i c d i s c u s s i o n of r e t a r d a t i o n i s s u e s i n B r i t i s h Columbia. I n o r d e r t o examine the t h r e e a r e a s , n o r m a l i z a t i o n was d e f i n e d i n the G r e a t e r Vancouver A r e a o f s t u d y u s i n g the e x p l i c i t judgement o f c i t i z e n s and the i m p l i c i t judgement o f p r o f e s s i o n a l s . From t h e i r judgements, a c r i t e r i a f o r measuring n o r m a l i z a t i o n was d e v e l o p e d and used i n s c o r i n g i n d i v i d u a l s e r v i c e s a c c o r d i n g t o t h e s p e c i a l f e a t u r e s o f th o s e s e r v i c e s . A t o t a l o f seven s e r v i c e a r e a s were s c o r e d : R e s i d e n t i a l , S o c i a l , M e d i c a l , R e c r e a t i o n a l , E d u c a t i o n a l , P s y c h o l o g i c a l and V o c a t i o n a l . The needs o f s u b j e c t s were i d e n t i f i e d from i n s t i t u t i o n a l r e c o r d s and s c o r e d . F i v e s e r v i c e c h a r a c t e r i s t i c s were f u r t h e r examined f o r n o r m a l i z a t i o n . These were t h e n a t u r e , t y p e , name, l o c a t i o n and degree o f i n t e g r a t i o n . An i n t e g r a t e d framework f o r p o l i c y a n a l y s i s as w e l l as empir-i c a l r e s u l t s were t h e n used t o a n a l y s e f i n d i n g s . The s t u d y showed t h a t community s e r v i c e s were e s s e n t i a l l y d e v i a n t i n o r i e n t a t i o n ; t h a t l e v e l o f n o r m a l i z a t i o n were about the same f o r each f i v e y e a r p e r i o d o f s t u d y ; t h a t s e r v i c e s were i n a d e q u a t e i n m e e t i n g needs; t h a t t h e r e was l a c k o f c o o r d i n -a t i o n i n d e l i v e r y o f s e r v i c e s ] and t h a t " n o r m a l i z a t i o n " was a p r i n c i p l e r a t h e r t h a n a p o l i c y of t h e P r o v i n c i a l Government. I m p l i c a t i o n s f o r p o l i c y development as w e l l as areas f o r f u r t h e r r e s e a r c h have been s u g g e s t e d . - i v TABLE OF CONTENTS CHAPTER PAGE 1. 0 INTRODUCTION 1 1. 1 G e n e r a l Background t o the I s s u e 9 1. 1. 1 H i s t o r i c a l and P h i l o s o p h i c a l Approaches 10 1. 1. 2 H i s t o r i c a l T h e o r i e s o f M e n t a l R e t a r d a t i o n 12 1. 1. 3 Modern Approaches 14 1. 1. 4 S o c i a l F a c t o r s and New I d e o l o g i e s 17 1. 2 N o r m a l i z a t i o n I d e o l o g y 20 1. 3 The I s s u e i n B r i t i s h Columbia 24 1. 3. 1 P o l i c y Development: M e d i c a l 25 1. 3. 2 P o l i c y Development: S o c i a l 28 1. 3. 3 Human Resources Takeover 31 1. 4 V o l u n t a r y E f f o r t 35 1. 4. 1 P u b l i c and V o l u n t a r y E f f o r t 39 1. 5 S e r v i c e s f o r R e t a r d e d A d u l t s 42 1. 5. 1 S e r v i c e s Under L . I . F . E . Program 45 1. 6 The I s s u e 45 1. 6. 1 Statement o f t h e Problem 48 1. 6. 2 Purpose o f t h e Study 48 1. 6. 3 O p e r a t i o n a l D e f i n i t i o n s 49 1. 6. 4 Research Q u e s t i o n s 50 1. 6. 5 Hypotheses 51 1. 7 B r i e f P l a n o f Study 51 1. 8 O r g a n i z a t i o n o f t h e T h e s i s 53 2. 0 REVIEW OF LITERATURE 54 2. 1 Concept and Meaning 54 2. 1. 1 I m p l i c a t i o n s o f Meaning 59 2. 1. 2 C l a s s i f i c a t i o n 60 2. 2 L a b e l i n g and Deviance i n M e n t a l R e t a r d a t i o n 63 2. 2. 1 S o c i e t a l R e a c t i o n 66 2. 2. 2 Models o f Care 68 2. 2. 3 Models o f S o c i e t y 72 2. 3 S o c i a l P o l i c y 73 2. 3. 1 Domain o f S o c i a l P o l i c y 74 2. 3. 2 F o r m u l a t i o n o f M e n t a l R e t a r d a t i o n P o l i c y 76 2. 4 I n s t i t u t i o n a l i z a t i o n ; D e - I n s t i t u t i o n a l i z a t i o n and Community L i v i n g 77 2. 5 The N o r m a l i z a t i o n P r i n c i p l e R e v i s i t e d 84 2. 5. 1 I n t e r p r e t a t i o n s o f N o r m a l i t y 85 2. 5. 2 R i g h t s of N o r m a l i t y 86 2. 5. 3 N o r m a l i z a t i o n S t u d i e s and Arguments 87 2. 5. 6 Dimensions and I m p l i c a t i o n s of N o r m a l i z a t i o n 90 2. 6 Community Adjustment o f D e - I n s t i t u t i o n a l i z e d M e n t a l l y R e t a r d e d A d u l t s 93 2. 7 The R e t a r d e d A d u l t i n t h e Community 95 2. 7. 1 The N a t u r e o f Community S e r v i c e s 99 2. 8 The Needs o f the R e t a r d e d A d u l t 101 2. 9 Summary 102 - v -CHAPTER PAGE 3.0 CONCEPTUAL AND METHODOLOGICAL GUIDELINES 104 3.1 P o l i c y Concept 104 3.1.1 P o l i c y A n a l y s i s 106 3.2 N o r m a l i z a t i o n Concept 108 3.3 Needs and S e r v i c e s 110 3.4 D e s i g n o f Study 110 3.4.1 D e t e r m i n i n g N o r m a l i z a t i o n i n G r e a t e r Vancouver Region 111 3.4.2 O r g a n i z a t i o n and D e s i g n 115 3.5 Summary 117 4.0 PROCEDURE AND METHODOLOGY 119 4.1 L i m i t s o f Study 119 4.1.1 P o p u l a t i o n 119 4.1.2 A r e a f o r Study 120 4.1.3 P e r i o d s Under Study 120 4.1.4 Assumptions and L i m i t a t i o n s 121 4.2 P r o c e d u r e 123 4.2.1 Stage I 125 4.2.2 Stage I I 129 4.2.3 Stage I I I 131 4.3 Method o f Study 133 5.0 RESULTS AND ANALYSIS 135 5.1 E m p i r i c a l R e s u l t s 135 5.1.1 Needs and S e r v i c e s 139 5.1.2 D i s t r i b u t i o n o f S u b j e c t s i n t h e Community 142 5.1.3 D i s t r i b u t i o n o f Community-based S e r v i c e s 146 5.1.4 I n t e l l e c t u a l L e v e l and S o c i a l Age 152 5.1.5 N o r m a l i z a t i o n C o n t e n t i n S e r v i c e s 159 5.2 Summary o f E m p i r i c a l R e s u l t s 187 5.3 P o l i c y A n a l y s i s 191 6.0 SUMMARY, CONCLUSIONS AND IMPLICATIONS 200 6.1 Summary 200 6.2 C o n c l u s i o n s 202 6.3 I m p l i c a t i o n s 203 6.3.1 I m p l i c a t i o n s f o r P o l i c y Making 203 6.3.2 I m p l i c a t i o n s f o r F u r t h e r R esearch 204 BIBLIOGRAPHY 20 6 APPENDICES 221 - v i -LIST OF TABLES T a b l e Page 1. I m p l i c i t and E x p l i c i t judgement o f Normal- 127 i z a t i o n o f S e r v i c e s and P e r c e n t a g e a g r e e -ment by P r o f e s s i o n a l s . 2. D i s t r i b u t i o n o f Items as p e r c e n t a g e o f sub- 136 group p o p u l a t i o n s . 3. No. o f s e r v i c e s r e c e i v e d and n o t r e c e i v e d 141 as p e r c e n t a g e s o f i d e n t i f i e d n e e d s / s e r v i c e s f o r each sub-group. 4. D i s t r i b u t i o n o f S u b j e c t s t o R e s i d e n t i a l 143 F a c i l i t i e s as p e r c e n t a g e o f sub-group p o p u l a t i o n s : Male and Female. 5. No. o f p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e s 147 not r e c e i v e d , b u t i d e n t i f i e d a t time o f d i s c h a r g e : Male Groups A and B. 6. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e s 147 r e c e i v e d b u t n o t i d e n t i f i e d a t t i m e o f d i s -c harge: Males Group A and B. 7. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e s 148 no t r e c e i v e d , b u t i d e n t i f i e d a t time o f d i s c h a r g e : Female Groups A and B. 8. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e s 148 r e c e i v e d b u t not i d e n t i f i e d a t time o f d i s c h a r g e : Female Groups A and B. 9. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 153 i n t e l l e c t u a l l e v e l f o r male and female s u b j e c t s : Groups A and B. 10. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 156 i n t e l l e c t u a l l e v e l : Male Groups A and B. 11. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 156 i n t e l l e c t u a l l e v e l : Female Groups A and B. 12. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 158 s o c i a l age l e v e l : Male and female s u b j e c t s : Groups A and B. 13. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 158 s o c i a l age l e v e l : Male Groups A and B. 14. No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d 158 s o c i a l age: Female Groups A and B. - v i i -T a b l e Page 15. No. and p e r c e n t a g e s c o r e f o r each measure 161 o f n o r m a l i z a t i o n c o n t e n t : Male and Female Groups A and B. 16. T o t a l no. and p e r c e n t a g e s c o r e f o r each 163 measure o f n o r m a l i z a t i o n c o n t e n t : Male Groups A and B. 17. T o t a l no. and p e r c e n t a g e s c o r e f o r each measure o f n o r m a l i z a t i o n c o n t e n t : Female Groups A and B. 163 18. No. and p e r c e n t a g e s c o r e f o r each measure 165 o f n o r m a l i z a t i o n c o n t e n t : Male Group A and Female Group A. 19. No. and p e r c e n t a g e s c o r e f o r each measure 165 o f n o r m a l i z a t i o n c o n t e n t : Male Group B and Female Group B. 20. No. and p e r c e n t a g e o f s e r v i c e s s c o r e d p e r 167 l e v e l o f n o r m a l i z a t i o n : Male Groups A and B. 21 No. and p e r c e n t a g e o f s e r v i c e s s c o r e d p e r 169 l e v e l o f n o r m a l i z a t i o n : Female Groups A and B. 22. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e 170 c h a r a c t e r i s t i c s c o r e p e r l e v e l o f n o r m a l -i z a t i o n : Male Groups A and B ( R e s i d e n t i a l , S o c i a l , M e d i c a l , and P s y c h o l o g i c a l S e r v i c e s ) . 23. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e 172 c h a r a c t e r i s t i c s c o r e p e r l e v e l o f n o r m a l -i z a t i o n : Male Groups A and B ( R e c r e a t i o n a l , V o c a t i o n a l , E d u c a t i o n a l S e r v i c e s ) . 24. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e 179 c h a r a c t e r i s t i c s c o r e p e r l e v e l o f n o r m a l -i z a t i o n : Female Groups A and B ( R e s i d e n t i a l , S o c i a l , M e d i c a l and P s y c h o l o g i c a l S e r v i c e s ) . 25. No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e 183 c h a r a c t e r i s t i c s c o r e p e r l e v e l o f n o r m a l -i z a t i o n : Female Groups A and B: ( R e c r e a t i o n a l , V o c a t i o n a l , and E d u c a t i o n a l S e r v i c e s ) . - v i i i -LIST OF FIGURES F i g u r e 1. Schematic diagram o f s t u d y p r o c e d u r e Page 124 APPENDICES Appendix A ( i ) C e r t i f i c a t e o f a p p r o v a l f o r r e s e a r c h ( i i ) P e r m i s s i o n r e q u e s t l e t t e r s - I n s t i t u t i o n ( i i i ) P e r m i s s i o n r e q u e s t l e t t e r s - Community ( i v ) P e r m i s s i o n r e q u e s t l e t t e r s - V o l u n t e e r S e c t o r (v) P e r m i s s i o n l e t t e r : M i n i s t r y o f Human Resources ( v i ) Sample p e r m i s s i o n l e t t e r - V o l u n t e e r S e c t o r Appendix B ( i ) L e t t e r t o p a n e l o f judges ( i i ) D e f i n i t i o n s ( i i i ) C l o s e d q u e s t i o n n a i r e Appendix C ( i ) Measures o f S e r v i c e s and C r i t e r i a ( i i ) -( v i i i ) Measures o f I n d i v i d u a l S e r v i c e s Page 221 222 223 224 225 226 227 228 229 230 231 238 239 240 - i x -ACKNOWLEDGEMENTS The w r i t e r e x p r e s s e s h i s a p p r e c i a t i o n t o t h e M i n i s t r y o f Human Resources and t o L o c a l A s s o c i a t i o n s f o r the M e n t a l l y R e t a r d e d f o r p e r m i s s i o n t o o b t a i n the n e c e s s a r y d a t a f o r t h i s s t u d y ; t o D r s . Anne C r i c h t o n and P a t r i c i a Woodward f o r a c t i n g as c o n s u l t a n t s d u r i n g the d i f f i c u l t p l a n n i n g s t a g e s and t o my w i f e , Mrs. J a c i n t a E n i f o r s u p p o r t d u r i n g the l o n g hours o f d a t a g a t h e r i n g and a n a l y s i s . A p p r e c i a t i o n i s a l s o extended t o the N a t i o n a l I n s t i t u t e on M e n t a l R e t a r d a t i o n (NIMR) f o r p r o v i d i n g a F e l l o w s h i p Award wh i c h e n a b l e d the c o m p l e t i o n o f the s t u d y . F i n a l l y , I w i s h t o e x p r e s s s i n c e r e a p p r e c i a t i o n t o Dr. Morton Warner, Dr. Vance M i t c h e l l and P r o f e s s o r Anne T i l l e y f o r p r o v i d i n g g u i d -ance as members o f t h e s t u d y committee. - 1 -CHAPTER 1.0 INTRODUCTION T h i s t h e s i s has been d e v e l o p e d t o e x p l o r e t h e n a t u r e and c o n t e n t of t h e p o l i c y o f " n o r m a l i z a t i o n " toward s e r v i c e s w h i c h have been p r o v i d e d f o r p r e v i o u s l y i n s t i t u t i o n a l i z e d , m e n t a l l y r e t a r d e d a d u l t s from Woodlands - a p r o v i n c i a l i n s t i t u t i o n a t New W e s t m i n s t e r , B r i t i s h Columbia. The s t u d y i s r e t r o s p e c t i v e , and aims t o : (a) examine t h e r e l a t i o n s h i p between needs and s e r v i c e s , (b) a n a l y s e t h e p r o c e s s of s o c i a l p o l i c y and (c) p r o v i d e d a t a t o a i d d e c i s i o n - m a k e r s i n p l a n n i n g community-based s e r v i c e s f o r r e t a r d e d a d u l t s . One a r e a o f c o n c e r n w h i c h has g a i n e d c o n s i d e r a b l e a t t e n -t i o n and c o n t r o v e r s y i s : "what i s t o be done w i t h p e o p l e who are not 'normal' by s o c i e t y ' s s t a n d a r d s ? " T h i s concern has been l e s s of a problem f o r handicapped c h i l d r e n as f o r h a n d i -capped a d u l t s . S o c i e t y has g e n e r a l l y tended t o be more sym-p a t h e t i c t o t h e heeds o f c h i l d r e n , and t h i s sympathy has been used t o d e v e l o p p o l i c i e s and s e r v i c e s w h i c h are t a r g e t e d more t o t h o s e needs. As a r e s u l t , the p r e s e n c e o f m e n t a l l y r e t a r d e d c h i l d r e n i n t h e community r a i s e s l e s s c o n t r o v e r s y than does the p r e s e n c e of s i m i l a r a d u l t s . I n p a r t , t h e c o n t r o v e r s y i s due t o the h i s t o r i c a l t r e a t m e n t w h i c h has been accorded persons who a r e m e n t a l l y r e t a r d e d . A t v a r i o u s t i m e s they have been s o u r c e s o f s u p e r s t i t i o n , m i s u n d e r s t a n d i n g , f e a r , sorrow and amusement ( B a r r 1904). C o n s e q u e n t l y , they have been w o r s h i p p e d , i m p r i s o n e d , o r l e f t t o d i e as o u t c a s t s o f s o c i e t y (Kanner, 1964). - 2 -More o f t e n , t hey have been g i v e n l a b e l s w h i c h s t i g m a t i z e and d i f f e r e n t i a t e them from t h e r e s t of s o c i e t y (Ryan and Thomas, 1980) . However, t h e e v o l u t i o n of p u b l i c c o n c e r n f o r t h e r e t a r d e d has been c e n t e r e d around the a s s e r t i o n o f d i f f e r e n c e between p e o p l e and t h e concept o f d e v i a n c y . The a s s e r t i o n o f d i f f e r -ence i s seldom n e u t r a l and i m p l i e s some k i n d o f s o c i a l d i s t a n c e . On t h e o t h e r hand, t h e concept o f d e v i a n c y encourages d i s -t i n c t i o n w hich makes i t d i f f i c u l t f o r t h o s e persons so l a b e l l e d t o appear as o r d i n a r y p e o p l e ( R o w i t z , 1981). T h e r e f o r e , p u b l i c c o n c e r n f o r m e n t a l r e t a r d a t i o n has been h a n d l e d i n d i f f e r e n t ways wh i c h o f t e n r e p e a t o v e r t i m e . These measures i n c l u d e : d e s t r o y i n g the d e v i a n t p e r s o n ; making the d e v i a n t p e r s o n un-d e v i a n t u s u a l l y t h r o u g h e d u c a t i o n , t r e a t m e n t , and t r a i n i n g ; p r e v e n t i n g d e v i a n c y by t h e means o f b i r t h c o n t r o l , e a r l y d e t e c t i o n o f g e n e t i c a b n o r m a l i t y , good h e a l t h c a r e and p r e -v e n t i v e m e d i c i n e ; and by r e d e f i n i n g s o c i a l p o l i c y and p h i l o s o p h y . I n g e n e r a l , s o c i e t y has not been a b l e t o s o r t out i t s f e e l i n g s about m e n t a l l y r e t a r d e d c i t i z e n s . Reformers, a t a l l t i m e s t e n d t o argue t h a t m e n t a l l y h a n d i c a p p e d 1 p e o p l e are not The term "handicapped" i s c o n s i d e r e d l e s s s t i g m a t i z i n g t h a n " r e t a r d e d " . The Vancouver/Richmond A s s o c i a t i o n f o r t h e m e n t a l l y r e t a r d e d i s p r e s e n t l y c o n s i d e r i n g a r e s o l u t i o n f o r name change t o "the m e n t a l l y handicapped." Both terms are used i n t e r c h a n g a b l y i n t h i s t h e s i s . - 3 -so d i f f e r e n t from o t h e r p e o p l e . T h e r e f o r e , t h e y s h o u l d not be t r e a t e d d i f f e r e n t l y b u t s h o u l d be g i v e n , a t l e a s t , some o f t h e r i g h t s and o p p o r t u n i t i e s o t h e r s have ( W o l f e n s b e r g e r , 1972). However, t h o s e who emphasize th e d i f f e r e n c e s argue f o r a more s e g r e g a t e d l i f e f o r t h e m e n t a l l y r e t a r d e d . They see t h e g o a l o f r e d u c i n g t h e d i f f e r e n c e s between th e handicapped and t h e r e s t o f t h e s o c i e t y as e i t h e r i m p o s s i b l e , because t h e i r p o t e n t i a l i s l i m i t e d , o r s i m p l y as u n d e s i r a b l e (Throne, 1975). However, the r e a l argument seems t o be o v e r t h e f e a s i b i l i t y o f m i n i m i z i n g t h e s e d i f f e r e n c e s t h r o u g h e d u c a t i o n , t r a i n i n g o r i n t e g r a t i o n i n t o s o c i e t y ; and whether i t i s w o r t h d e v o t i n g c o n s i d e r a b l e r e s o u r c e s t o d o i n g so. A n o t h e r a r e a o f c o n c e r n t o r e f o r m e r s i s p u b l i c a t t i t u d e towards th e m e n t a l l y imcompetent. "Gottwald (1970) has shown t h a t the p u b l i c g e n e r a l l y a s s o c i a t e the p hrase " m e n t a l l y r e t a r d e d " w i t h b i r t h i n j u r y , d e f e c t s , b r a i n damage o r g e n e r a l l y s e v e r e forms o f m e n t a l r e t a r d a t i o n . Begab (1968) had p r e v i o u s l y found t h a t p e o p l e t e n d t o view r e t a r d e d p e r s o n s as s i c k o r p h y s i c a l l y handicapped. That i n t h e absence o f a s p e c i f i c r e f e r e n t , most p e o p l e c o n c e p t u a l i z e s e v e r e forms o f r e t a r d a t i o n as w e l l as d e v i a n c y . T h i s has l e d t o c a l l s f o r a r e d u c t i o n o f m e d i c a l i n f l u e n c e i n t h e a r e a o f m e n t a l r e t a r d a t i o n as w e l l as s t r a t e g y f o r i n f l u e n c i n g p u b l i c a t t i t u d e towards more f a v o u r -a b l e e x p e r i e n c e . (Ryan and Thomas, 1980, N e u f e l d , 1980). A t p r e s e n t , i s s u e s about th e way t o p r o v i d e s e r v i c e s f o r m e n t a l l y r e t a r d e d p e r s o n s do n o t o f t e n s u r f a c e t o c o n f r o n t t h e _ 4 -p u b l i c c o n s c i e n c e . However, t h e s e i s s u e s may be t h e s u b j e c t o f c o n s i d e r a b l e debate among s p e c i a l i n t e r e s t g r o u p s , a g e n c i e s , t h e government, and p r a c t i t i o n e r s who a r e d i r e c t l y a s s o c i a t e d w i t h t h o s e i n need o f s e r v i c e s . O c c a s i o n a l l y , the layman h e a r s about what i s needed and what i s not a v a i l a b l e because a news-worthy e v e n t , u s u a l l y w i t h c r i m i n a l o v e r t o n e s , i n v o l v e s a m e n t a l l y r e t a r d e d p e r s o n . From t i m e t o t i m e , a c r u s a d i n g j o u r n a l i s t w i l l d e c r y t h e apparent l a c k o f adequate s e r v i c e s , o r a p a r t i c u l a r group w i l l p u b l i c i z e t h e need f o r a l t e r n a t i v e s t o t h o s e a l r e a d y i n e x i s t e n c e ; o r o f f e r s o l u t i o n s o r s u g g e s t i o n s f o r what s h o u l d be p r o v i d e d . These i n t e r m i t t e n t o u t b u r s t s b r i n g a c t i o n i n t h e s p e c i f i c a r e a s t o which t h e y a r e d i r e c t e d , b u t t h e whole i s s u e o f what t o do w i t h s o c i e t y ' s m e n t a l l y r e t a r d e d members remain f a r down the l i s t o f p r i o r i t i e s f o r p u b l i c c o n s c i e n c e and p u r s e . The layman a c c e p t s the whole q u e s t i o n o f m e n t a l d i s a b i l i t y as a m e d i c a l problem i f i t appears t o r e q u i r e m e d i c a l t r e a t m e n t ; as a " w e l f a r e " problem i f t h e i n f l i c t e d p e r s o n i s not c a p a b l e o f s u p p o r t i n g h i m s e l f ; and as a j u d i c i a l p roblem i f t h i s p e r s o n runs a f o u l o f t h e law. However, i t i s s o c i e t y ' s p e r c e p t i o n o f m e n t a l l y r e t a r d e d p e r s o n s as s i c k p e r s o n s w h i c h has l e d t o the development o f s e r v i c e s based on m e d i c a l t r e a t m e n t w i t h d o c t o r s and nur s e s as c a r e t a k e r s and a d i a g n o s t i c framework f o r t r e a t m e n t . On t h e o t h e r hand, j u d i c i a l problems have been c o m p l i c a t e d by t h e n o t i o n o f incompetence and a d e n i a l o f r i g h t t o due p r o c e s s . N e v e r t h e l e s s , t h e i s s u e o f d e t e r m i n i n g t h e magnitude, the range and t h e q u a l i t y o f r e t a r d a t i o n - 5 -problems and s e r v i c e s w i t h i n t h e Community, and t h e e x t e n t o f government's r e s p o n s i b i l i t y , has t o be f a c e d . I n r e c e n t y e a r s , p u b l i c debate has c e n t e r e d on t h e p r o -v i n c i a l government's p o l i c y t o d e - i n s t i t u t i o n a l i z e , " n o r m a l i z e , " and i n t e g r a t e m e n t a l l y r e t a r d e d p e r s o n s i n t o t h e i r communities, as w e l l as the p e r s p e c t i v e under w h i c h such a t a s k i s t o be a c c o m p l i s h e d ( D o n n e l l a n , 1980, Brown, 1980). The debate has o c c u p i e d t h e a t t e n t i o n and a c t i v i t i e s o f t h e v o l u n t e e r s e c t o r and t h e M i n i s t r y o f Human Resources i n B r i t i s h Columbia. F o r f o u r c o n s e c u t i v e y e a r s , t h e B r i t i s h Columbia A s s o c i a t i o n f o r the M e n t a l l y R e t a r d e d (BCAMR) passed r e s o l u t i o n s r e q u e s t i n g t h e p r o v i n c i a l government d e p o p u l a t e p r o v i n c i a l i n s t i t u t i o n s f o r m e n t a l r e t a r d a t i o n , s t o p p l a n s f o r c a p i t a l e x p e n d i t u r e s i n i n s t i t u t i o n s , p r e v e n t f u r t h e r a d m i s s i o n s , d e v e l o p community s e r v i c e s f o r t h e i n t e g r a t i o n o f former i n s t i t u t i o n a l r e s i d e n t s , 2 and r e t u r n them t o t h e i r l o c a l communities. Elsewhere i n Canada t h e debate has expanded t o i n v o l v e c a r e g i v e r s i n i n s t i t u t i o n s . The O n t a r i o P u b l i c S e r v i c e Employees Union (OPSEU, 19 80) has p u b l i s h e d a Repo r t on de-i n s t i t u t i o n a l i z a t i o n and community i n t e g r a t i o n programs i n O n t a r i o . T h i s r e p o r t s u g g e s t s t h a t many m e n t a l l y r e t a r d e d 2. The 23rd A n n u a l C o n f e r e n c e o f BCAMR a t Nanaimo s p e c i f i c a l l y r e s o l v e d t h a t t h e government d e v e l o p p l a n s t o p r e v e n t f u r t h e r a d m i s s i o n s t o i n s t i t u t i o n s by Dec. 31, 1980: R e s o l u t i o n : No. 21; and t o r e t u r n a l l i n s t i t u t i o n a l r e s i d e n t s t o t h e community by same d a t e : R e s o l u t i o n No. 23. - 6 -p e r s o n s have been d i s c h a r g e d t o h i g h l y u n s a t i s f a c t o r y community s i t u a t i o n s where they r e c e i v e mere c u s t o d i a l c a r e . The r e p o r t i s c r i t i c a l o f the p o l i c y under w h i c h i n s t i t u t i o n a l r e s i d e n t s are p l a c e d i n the community w i t h o u t adequate community s e r v i c e s , and makes th e o b s e r v a t i o n t h a t improvement i n i n -s t i t u t i o n a l programs may be p r e f e r a b l e t o i n a d e q u a t e community s e r v i c e s . I t might be s u g g e s t e d t h a t c a r e g i v e r s i n B r i t i s h Columbia i n s t i t u t i o n s a r e e q u a l l y a p p r e h e n s i v e o f d e - i n s t i t u t i o n a l i z a t i o n and " n o r m a l i z a t i o n " p o l i c i e s . More r e c e n t l y , the debate has begun t o assume w i d e r media coverage i n an e f f o r t t o g a i n wide p u b l i c u n d e r s t a n d i n g and sympathy. Sometimes, newspaper a r t i c l e s p o r t r a y i n g t h e b e n e f i c i a l e f f e c t s o f i n s t i t u a t i o n a l and community i n t e g r a t i o n programs f o r r e t a r d e d a d u l t s , have appeared s i m u l t a n e o u s l y . (Goad, 1981). I n a p u b l i c l e t t e r a d d r e s s e d t o a l l p r o v i n c i a l members o f the L e g i s l a t i v e Assembly, t h e B r i t i s h Columbia A s s o c i a t i o n f o r the M e n t a l l y R e t a r d e d (BCAMR) r a i s e d t h e f o l l o w i n g i s s u e s 3 w i t h t h e p r o v i n c i a l government: (a) t h a t t h e p r i n c i p l e o f n o r m a l i z a t i o n r e g a r d i n g t h e r i g h t s o f r e t a r d e d p ersons t o l i v e i n t h e i r home communities has not been e f f e c t e d ; (b) t h a t 3. Other i s s u e s r a i s e d i n t h e l e t t e r d a t e d May 14, 1981 r e l a t e t o f u n d i n g arrangements and fund a l l o c a t i o n f o r community based s e r v i c e s , f e d e r a l c o s t s h a r i n g a r r a n g e -ment and t h e need f o r s t r a t e g i c p l a n s . - 7 -p r o c e s s o f d e - i n s t i t u t i o n a l i z a t i o n has been slowed f o u r y e a r s a f t e r government's "guaranteed" commitment; (c) t h a t community l i v i n g a l t e r n a t i v e s and community based r e s o u r c e s have f a l l e n below expanding need. The M i n i s t e r o f Human Resources responded by r e i t e r a t i n g t h e government's commitment t o the " p r i n c i p l e s o f n o r m a l i z a t i o n " and the e x p a n s i o n o f community s e r v i c e s f o r m e n t a l l y r e t a r d e d p e r s o n s . The M i n i s t e r f u r t h e r o b s e r v e d t h a t " i t would be a d i s s e r v i c e t o move r e s i d e n t s b e f o r e t h e s u p p o r t s were t h e r e " and o p t e d f o r c a r e f u l p l a n n i n g t o ensure s u c c e s s . The i s s u e s i n v o l v e d i n t h i s debate a r e e l a b o r a t e d l a t e r on i n t h i s c h a p t e r . However, i t c o u l d be s a i d t h a t t h e v o l u n -t e e r s e c t o r i s unhappy w i t h the r a t e a t w h i c h i n s t i t u t i o n a l i z e d p ersons are r e t u r n e d t o t h e community. They would l i k e t o see t h e development o f more community based s e r v i c e s t o meet i n -d i v i d u a l needs. A t t h e same t i m e t h e s e advocates seek adher-ence t o t h e p r i n c i p l e s of n o r m a l i z a t i o n t o w h i c h the government i s a l s o committed. A key q u e s t i o n t h e r e f o r e r e l a t e s t o t h e r e l a t i o n s h i p between d e - i n s t i t u t i o n a l i z a t i o n and " n o r m a l i z a t i o n . " Are t h e s e c o n c e p t s synonymous? I f n o t , how does the development o f s e r v i c e s r e l a t e t o e i t h e r o r b o t h . What, t h e r e f o r e i s t h e c o n t e n t and p r o c e s s o f " n o r m a l i z a t i o n " i n t h e s e r v i c e s a l -ready i n p l a c e ? What i s " n o r m a l i z a t i o n ? " I t would appear t h a t a f t e r 5 y e a r s o f commitment t o - 8 -d e - i n s t i t u t i o n a l i z a t i o n and n o r m a l i z a t i o n p r i n c i p l e , t h e govern-ment has o p t e d f o r a n o t h e r l o o k a t t h e p o l i c y . Or, has t h e government u n d e r e s t i m a t e d p o l i c y i m p l i c a t i o n s b e f o r e t h e commitment t o r e t u r n m e n t a l l y r e t a r d e d persons from i n s t i t u t i o n s t o t h e i r communities? Records i n d i c a t e t h a t i n t h e p a s t f i v e y e a r s , 279 m e n t a l l y r e t a r d e d persons have been r e l e a s e d i n t o t h e community from Woodlands - the l a r g e s t o f t h e p r o v i n c i a l i n s t i t u t i o n s . A l s o t h e r e have been more t h a n 400 r e l e a s e s from Woodlands s i n c e 1969. However, t h e p o p u l a t i o n o f Woodlands o n l y d e c l i n e d by 4 7% i n t h e l a s t f i v e y e a r p e r i o d . T h i s has been e x p l a i n e d as r e s u l t i n g from new a d m i s s i o n s and r e f e r r a l s f o r d e t e n t i o n and t r e a t m e n t from t h e c o u r t s (Goad, 1981). The f a c t i s t h a t more th a n 900 per s o n s have been de-i n s t i t u t i o n a l i z e d from the t h r e e p r o v i n c i a l i n s t i t u t i o n s and r e t u r n e d t o t h e community s i n c e 1969. Some o f them had been r e l e a s e d b e f o r e t h e i n t r o d u c t i o n o f the " p r i n c i p l e o f normal-i z a t i o n " i n s e r v i c e s . T h i s s t u d y t h e r e f o r e i s about t h e p r o -c e s s and c o n t e n t o f n o r m a l i z a t i o n i n community-based s e r v i c e s w hich have been used t o ad d r e s s t h e i r needs. I t a l s o seeks t o d e t e r m i n e whether t h e i r needs a r e a d e q u a t e l y a d d r e s s e d by t h e s e s e r v i c e s . I n o r d e r t o have a b e t t e r u n d e r s t a n d i n g of the problem, 4. These f i g u r e s have been c a l c u l a t e d from t h e Annual r e p o r t s of t h e M i n i s t r y o f Human Resources 1969 t o 1980. - 9 -i t i s n e c e s s a r y t o d e s c r i b e t h e g e n e r a l background t o t h e i s s u e , t h e concept o f " n o r m a l i z a t i o n , " and the s p e c i f i c background t o t h e problem i n B r i t i s h C olumbia. 1.1 G e n e r a l Background t o t h e I s s u e M e n t a l r e t a r d a t i o n s e r v i c e s i n Canada o r i n B r i t i s h C olumbia have f o l l o w e d much the same p r o c e s s as i n G r e a t B r i t a i n o r t h e U n i t e d S t a t e s o f A m e r i c a . Canada i n h e r i t e d from B r i t a i n a number o f c o n c e p t s about i n s a n i t y , m e n t a l r e t a r d a t i o n and c r i m i n a l b e h a v i o u r . These a r e d e l i n e a t e d e i t h e r as F e d e r a l o r as P r o v i n c i a l r e s p o n s i b i l i t i e s by t h e B r i t i s h N o r t h American A c t o f 1867. Jones (1960) t r a c e d t h e d e v e l o p -ment of s e r v i c e s i n B r i t a i n , and notes t h e growing a c c e p t a n c e of the i d e a o f d i v e r s i f i e d system o f c a r e . Deutsch (1949) c h a r t e d t h e h i s t o r y o f t h e c a r e o f t h e m e n t a l l y i l l and t h e m e n t a l l y r e t a r d e d i n t h e U n i t e d S t a t e s a l o n g s i m i l a r l i n e s . I n B r i t a i n , as i n d e e d i n N o r t h A m e r i c a n , the k i n d of a t t e n t i o n g i v e n t o p e o p l e who e x h i b i t m e n t a l d i s o r d e r and d e v i a n c e has been a f u n c t i o n o f t h e way i n w h i c h t h e i r b e h a v i o u r has been c l a s s i f i e d o r how they have been p e r c e i v e d . C r i c h t o n (1980) s u g g e s t s t h a t the term m e n t a l d i s o r d e r i s d i a g -n o s t i c and t r e a t m e n t o r i e n t e d , b u t i n a t t e m p t i n g t o c o n t r o l t h e r e s i d u a l d e v i a n c e o f m e n t a l d i s o r d e r , s o c i e t y has had g r e a t d i f f i c u l t y i n s o r t i n g o ut and l a b e l l i n g i t , and i n d i s -t i n g u i s h i n g between t h e l i m i t s o f t o l e r a b l e and d e v i a n t be-h a v i o u r , and between the c r i m i n a l and the i n s a n e . Armour (1979) a l s o o b s e r v e s t h a t f o r m a l a t t e m p t s t o meet the needs - 10 -o f the r e t a r d e d i n Canada, as i n G r e a t B r i t a i n , went hand i n hand w i t h e f f o r t s on b e h a l f o f t h e m e n t a l l y i l l . I n a l l r e s -p e c t s , t h e g e n e r a l a t t i t u d e o f the Canadian S o c i e t y p a r a l l e l e d t h o s e o f t h e i r c o n t e m p o r a r i e s i n B r i t a i n and the U n i t e d S t a t e s o f A m e r i c a . 1.1.1 H i s t o r i c a l and P h i l o s o p h i c a l Approaches Approaches t o the problem of m e n t a l r e t a r d a t i o n a r e r o o t e d i n t h e broad p h i l o s o p h i c a l , r e l i g i o u s , economic, p o l i t i c a l and s o c i o - c u l t u r a l changes t h a t had t a k e n p l a c e i n Western Europe b e f o r e t h e 19th C e n t u r y . Seen as markedly d i f f e r e n t from most p e o p l e , i n appearance o r b e h a v i o u r , m e n t a l l y r e t a r d e d p e r s o n s g e n e r a l l y became p a r t o f a l a r g e r group of d e v a l u e d p e r s o n s r e c o g n i s e d by s o c i e t y as d i f f e r e n t o r d e v i a n t . The f a c t t h a t m e n t a l r e t a r d a t i o n and m e n t a l i l l n e s s were lumped t o g e t h e r shows the l a c k o f a c r i t i c a l f o c u s . T h e r e f o r e , r e t a r d a t i o n , l i k e a l l o t h e r forms of d e v i a n c e , was c o n s i d e r e d i n e i t h e r s u p e r s t i t i o u s o r s u p e r n a t u r a l terms (Maloney and Ward, 1979). T h i s r e s u l t e d i n a p a t t e r n of i n c o n s i s t e n c y and v a c i l l a t i o n i n s e n t i m e n t s o r b e h a v i o u r towards pe r s o n s p e r c e i v e d as m e n t a l l y incompetent. C o n s e q u e n t l y , t h e y were, a t one t i m e , p e r c e i v e d as "subhuman organisms," menace t o s o c i e t y , o b j e c t s o f p i t y , o r as burden o f c h a r i t y ( B a r r , 1904). A t o t h e r t i m e s t h e y have been con-s i d e r e d as " h o l y i n n o c e n t s " o r as d e v e l o p i n g persons (Kanner, 1964). T h e r e f o r e , t h e y have e i t h e r been c o n f e r e d w i t h l e s s t han f u l l humanity and r i g h t s o r t h e y have been d e i f i e d . I n o t h e r words, t h e y have e i t h e r been s e g r e g a t e d , d e s t r o y e d , - 11 -c o n f i n e d , p e r s e c u t e d o r c o n t r o l l e d / o r p i t i e d , s h e l t e r e d , g i v e n h a p p i n e s s o r p a t ' e r n a l i z e d . D u r i n g t h e m i d d l e ages, the n a t u r e o f t h e mind was con-s i d e r e d t o be w i t h i n t h e r e a l m o f p h i l o s o p h e r s , and t h e " c a r e " and " c u r e " o f mad men was d e l e g a t e d t o the c h u r c h and i t s b i s h o p s and p r i e s t s . D u r i n g t h i s p e r i o d , t h e c h u r c h i n s p i r e d b e n e v o l e n t approaches t o t h e r e t a r d e d ( B a r r , 1904). By the end o f t h e m i d d l e ages, w h i c h was c h a r a c t e r i z e d by i n d i f f e r e n c e , t h e r e were a v a r i e t y o f r e s p o n s e s . The r e t a r d e d were a l l o w e d t o roam t h e s t r e e t s o f European c i t i e s unmolested. A s e l e c t few s e r v e d as c o u r t j e s t e r s and many were r e g a r d e d as "prophets o f God" (Kanner, 1964). However, by t h e 18th C e n t u r y t h e t r e a t -ment of t h e r e t a r d e d has reached a low p o i n t , and b o t h C a l v i n and L u t h e r denounced them as " f i l l e d w i t h Satan" ( M e n o l a s c i n o , 1979) . Maloney and Ward (1979) c h a r a c t e r i z e t h i s p e r i o d as p r e -s c i e n t i f i c . F i r s t , t h e r e was l i t t l e awareness of e i t h e r i n -t e l l i g e n c e o r o f m e n t a l r e t a r d a t i o n . Second, what l i t t l e awareness t h a t e x i s t e d was r e a l l y a r e c o g n i t i o n o f extreme d e v i a n c e , and t h e r e was no r e a l c o n c e r n f o r them o r p r o v i s i o n f o r t h e i r c a r e and t r e a t m e n t . L a t e i n t h e 1 8 t h C e n t u r y , men l i k e Jean-Marc I t a r d and Johann Guggenbuhl r e c o g n i s e d a need f o r t h e s c i e n t i f i c s t u d y of the causes o f d e v i a n c e . They i n t r o d u c e d t h e concept of c a r e f u l t r a i n i n g and t h e i r approach was e d u c a t i o n a l . However, w i t h t i m e , t h e r e were s e v e r e c r i t i c i s m s because t h e r e were no - 12 -" c u r e s " f o r m e n t a l r e t a r d a t i o n . Others l i k e S e q u i n , who o p t e d f o r i n d i v i d u a l i z e d i n s t r u c t i o n , d i d n o t f a r e t o o w e l l (Maloney and Ward, 1979). T h i s l e d t o t h e f i l l i n g up o f i n s t i t u t i o n s because e x p e c t e d d i s c h a r g e s o f r e s i d e n t s i n t o t h e community r a r e l y o c c u r r e d . F u r t h e r m o r e , e a r l y e n t h u s i a s m r e s u l t e d i n i n c r e a s e d r e f e r r a l s f o r h e l p . The i n s t i t u t i o n s were t h e r e f o r e f o r c e d t o d i l u t e t h e s e r v i c e s t h e y c o u l d p r o v i d e , f u r t h e r weakening t h e p o t e n t i a l f o r improvement i n t h e i r c l i e n t s . T h i s l e d t o ex-p a n s i o n and a c o r r e s p o n d i n g d e c r e a s e i n q u a l i t y o f c a r e (Ryan and Thomas, 1980). I n a n a l y s i n g t h e s e e a r l y p e r i o d s , i t i s i m p o r t a n t t o note t h a t o n l y s e v e r e l y r e t a r d e d p e r s o n s were i n v o l v e d . I t i s known a t t h e p r e s e n t time t h a t t h e s e p e r s o n s have s e r i o u s n e u r o l o g i c a l problems w h i c h p r e c l u d e f u l l r e m e d i a t i o n r e g a r d l e s s of t h e q u a l i t y o f e d u c a t i o n t h e y r e c e i v e . S i n c e i t has been r e c o g n i z e d t h a t m e n t a l r e t a r d a t i o n was " i n c u r a b l e , " t h e n o t i o n o f c u s t o d y began t o s u p p l a n t t h a t o f e d u c a t i o n . The r e t u r n o f r e s i d e n t s t o t h e community was no l o n g e r i n c o n s i d e r a t i o n . S c h o o l s became "asylums," and "asylums" became i n s t i t u t i o n s and p e r -manent c u s t o d i a l s h e l t e r s ( H e l s e l , 1971). R e s i d e n t s t r a i n i n g began t o f o c u s on s e r v i c e - t y p e t a s k s t o e n a b l e i n s t i t u t i o n s become l e s s e x p e n s i v e and s e l f s u f f i c i e n t ^ t h u s , u s h e r i n g i n an e r a of v o c a t i o n a l and o c c u p a t i o n a l t r a i n i n g . 1.1.2 H i s t o r i c a l T h e o r i e s o f M e n t a l R e t a r d a t i o n The f o r t u n e s o f t h e m e n t a l l y incompetent a l s o depended on whatever c u r r e n t t h e o r y has been advanced e i t h e r p o l i t i c a l l y - 13 -o r s c i e n t i f i c a l l y i n t h e s o c i e t y . The Theory o f H e r e d i t y , g e n e r a l l y r e f e r r e d t o as the D e g e n e r a t i o n Theory l e d t o the b e l i e f t h a t " h e r e d i t y t a i n t " c o u l d be e x p r e s s e d i n d i f f e r e n t forms o f d i s e a s e s such as me n t a l i l l n e s s o r m e n t a l r e t a r d a t i o n . The assumption was t h a t t h e e x p e r i e n c e s o f p a r e n t s a f f e c t e d t h e i r o f f s p r i n g . The t h e o r y was u l t i m a t e l y an e n v i r o n m e n t a l one w h i c h l e d t o t h e b e l i e f t h a t " n e g a t i v e t r a i t s " c o u l d be p r e v e n t e d w i t h l e s s i n d u l g e n c e (Saranson & D o r i s , 1969). A l c o h o l i s m and s e x u a l e x c e s s e s were some o f t h e s e " n e g a t i v e t r a i t s . " Hence, t h e r e were c a l l s f o r s o c i a l r e f orms w h i c h i n d i r e c t l y a f f e c t e d t h e m e n t a l l y r e t a r d e d . C h a r l e s Darwin's t h e o r y o f t h e " O r i g i n o f S p e c i e s " advanced the concept o f v a r i a t i o n , n a t u r a l s e l e c t i o n and the t r a n s -m i s s i o n of v a r i a t i o n t h r o u g h i n h e r i t a n c e . Darwin e x p l a i n e d l i f e i n terms o f s t r u g g l e f o r e x i s t e n c e and t h e s u r v i v a l o f the f i t t e s t . T h i s l e d , f o r t h e f i r s t t i m e , t o f o c u s on i n d i v i d u a l d i f f e r e n c e s and l a t e r t o t h e d i s c o v e r y o f m i l d m e n t a l r e t a r d a t i o n and the development o f i n t e l l i g e n c e t e s t (Begab, 1974). P e r s o n s whose b e h a v i o u r went p r e v i o u s l y un-no t e d o r were a t t r i b u t e d t o v a r i o u s forms o f c h a r a c t e r d e f e c t , were t h r u s t i n t o t h e l i m e l i g h t . Begab (1974) r e p o r t s t h a t t h e a p p l i c a t i o n o f i n t e l l i g e n c e t e s t s t o army t r o o p s i n t h e f i r s t w o r l d war, r e v e a l e d an a l a r m i n g number o f young men p e r f o r m i n g a t m e n t a l l y , subnormal l e v e l s . W i t h i n a s h o r t w h i l e , m e n t a l r e t a r d a t i o n became r e c o g n i z e d as a s o c i a l problem. However, t h e p u b l i c image o f r e t a r d e d p e r s o n s as damaged - 14 -pers o n s c o u l d n o t s u r v i v e t h e s e new r e v e l a t i o n s . A t t e n t i o n was f o c u s e d on s o c i a l l y t r oublesome f a m i l i e s d u r i n g t h e e a r l y p a r t o f t h e 20th c e n t u r y . T h i s gave r i s e t o t h e Eu g e n i c movement whic h based i t s p h i l o s o p h y on the s o c i o l o g i c a l t h e o r y o f " S o c i a l Darwinism," w h i c h says t h a t s o c i e t y was s u b j e c t t o t h e same p r i n c i p l e s o f n a t u r a l s e l e c t i o n as p l a n t s and a n i m a l s , and o n l y t h e f i t t e s t would s u r v i v e . The movement concluded:" t h a t t h e r e were more r e t a r d e d p e r s o n s i n t h e s o c i e t y t h a n was r e a l i z e d ; t h a t t h e r e t a r d e d accounted f o r v i r t u a l l y a l l o f the c u r r e n t s o c i a l i l l s ; t h a t h e r e d i t y was the major cause o f r e t a r d a t i o n ; and t h a t s o c i e t y would soon be d e s t r o y e d u n l e s s d r a s t i c measures were t a k e n ( M e n o l a s c i n o , 1977). These measures i n c l u d e p u t t i n g t h e r e t a r d e d t o d e a t h , r e s t r i c t i v e m a r r i a g e l a w s , c o n t r o l t h r o u g h l i f e s e g r e g a t i o n , and s t e r i l i z a t i o n . Thus began t h e movement f o r the i n s t i t u t i o n a l i z a t i o n o f the i " f e e b l e m i n d e d " w h i c h has remained p a r t of modern approaches t o the i s s u e o f me n t a l r e t a r d a t i o n . 1.1.3 Modern- Approaches As we have seen i n t h e h i s t o r i c a l o v e r v i e w , the approach t o mental r e t a r d a t i o n changed o v e r t h e c e n t u r i e s . The p h i l o -s o p h i c a l u n d e r p i n n i n g o f c u r r e n t s o c i a l p o l i c y were e s t a b l i s h e d by the time o f t h e R e n a i s s a n c e . The R e n a i s s a n c e man used "humanism" t o emphasize p r e -o c c u p a t i o n w i t h t h i n g s human, i n c o n t r a s t t o t h e t h e o l o g i c a l o r i e n t a t i o n o f h i s m e d i e v a l p r e d e c e s s o r . Humanism s t r e s s e d t h e " d i g n i t y o f man" and sought t o maximize h i s growth and - 15 -development. T h i s c o i n c i d e d w i t h the emergence o f i n d i v i d u a l i s m . T o g e t h e r , b o t h c o n t r i b u t e d t o t h e f a l l o f " f e u d a l " bondage. A l l e g i e n c e t o monarchs was g r a d u a l l y r e p l a c e d by t h e i d e a o f s o c i a l c o n t r a c t between t h e i n d i v i d u a l and t h e s t a t e . T h i s c u l m i n a t e d a t t h e Age o f R e v o l u t i o n i n A m e r i c a and F r a n c e . The essence o f t h e s e r e v o l u t i o n s was t h e d e c l a r a t i o n o f i n -d i v i d u a l human r i g h t s as embodied i n t h e American B i l l o f R i g h t s and t h e F r e n c h D e c l a r a t i o n of R i g h t s . C o n s e q u e n t l y , t h e f i r s t h a l f o f t h e 1 9 t h c e n t u r y w i t n e s s e d d r a m a t i c a p p e a l s f o r changes i n t h e t r e a t m e n t o f a l l t h e op-p r e s s e d , a f f l i c t e d , and handicapped. T h i s l e d t o the r i s e o f advocate groups on b e h a l f o f p r i s o n e r s , poor p e o p l e , s l a v e s , t h e i n s a n e and the m e n t a l l y r e t a r d e d (Ryan and Thomas, 1980). Thus, th e f a t e and i n t e r e s t s of t h e r e t a r d e d have become l i n k e d , as b e f o r e , w i t h t h o s e o f c h a n g i n g s o c i a l a t t i t u d e and p h i l o s -ophy. Today, among t h o s e t o whom the r e t a r d e d and t h e i r problems are most v i s i b l e and o f t h e g r e a t e s t c o n c e r n , a t t i t u d e s toward t h o s e i d e n t i f i e d as m e n t a l l y incompetent a r e c h a r a c t e r i z e d by a r e l a x a t i o n o f a n x i e t y and a swing towards a more o p t i m i s t i c p o i n t o f view c o n c e r n i n g p o t e n t i a l f o r e d u c a t i o n , t r a i n i n g , and m e a n i n g f u l s o c i a l p a r t i c i p a t i o n w i t h i n the community. However, the i d e a o f t h e i n s t i t u t i o n as a t r e a t m e n t and c ontainment c e n t r e f o r c o n g r e g a t e c a r e has p e r s i s t e d i n s p i t e o f new i d e o l o g i e s . As has been d i s c u s s e d e a r l i e r , the o r i g i n a l asylum was n o t c o n c e i v e d o r i n t e n d e d as a l i f e - l o n g i n s t i t u t i o n , - 16 -r a t h e r , as p l a c e s where " i d i o t s " c o u l d be t r a i n e d f o r a p e r i o d o f y e a r s f o r as l o n g as t h e y made p r o g r e s s . However, t h e r e was nowhere f o r them t o r e t u r n . F a m i l i e s were s c a t t e r e d and u n t r a c a b l e o r unable t o a c c e p t an " i d i o t " member however w e l l t r a i n e d . P u b l i c i n s t i t u t i o n s o f a l l k i n d s - f o r t h e o l d , t h e s i c k , t h e i n s a n e , the c r i m i n a l , and the young - were b u i l t i n i n c r e a s i n g numbers and s i z e s . Ryan and Thomas (1981) a t t r i b u t e t h e r i s e o f asylums and i n s t i t u t i o n s t o problems o f i d i o c y and heavy s t r a i n s on f a m i l y l i f e . Rothman (1971) s u g g e s t s t h a t the change from l o c a l t o i n s t i t u t i o n a l s o l u t i o n s was p a r t o f a p a n i c r e a c t i o n t o t h e r a p i d l y c h a n g i n g w o r l d o f t h e l a t e 18th and e a r l y 19th cen-t u r i e s . S c u l l (1979) a l s o s u g g e s t s t h a t i n E n g l a n d , t h e r i s e o f s p e c i a l i s t asylums s i g n i f i e d a s h i f t i n t h e way i n which th e p o o r , the dependent and the d e v i a n t were c o n t a i n e d . Pub-l i c workhouses, as opposed t o d o m e s t i c r e l i e f , were i n c r e a s -i n g l y used f o r a l l t h o s e who c o u l d n ot o r would n ot s u p p o r t themselves e c o n o m i c a l l y . Thus, asylums o f a l l k i n d s were seen as p o s i t i v e r e f o r m i n g f o r c e s o r i n s t r u m e n t s o f s o c i a l change. Over t i m e , m e d i c a l men became managers d e s p i t e t h e f a c t t h a t e d u c a t i o n i s t s had t a k e n the i n i t i a t i v e i n s e t t i n g them up. A t t h e same t i m e , s o c i e t y was becoming i n c r e a s i n g l y a l t r u i s t i c , and more concerned about t h e w e l f a r e o f the under-p r i v i l e g e d , t h e poor and t h e s i c k . I n the l a s t two decades, new p r e s s u r e groups have become more m i l i t a n t and c h a l l e n g i n g than the l o n g e s t a b l i s h e d c h a r i t i e s . S m a l l s e l f - h e l p groups - 17 -of p a r e n t s and advocates have appeared and h i g h l y c r i t i c a l , not j u s t of l a c k o f adequate c a r e i n i n s t i t u t i o n s , b u t a l s o ; o f t h e a t t i t u d e o f p r o f e s s i o n a l s (Ryan and Thomas, 1981). They ar e n o t o n l y c o n cerned w i t h "how human" b u t a l s o w i t h "how normal" the c a r e and s e r v i c e s o f t h e i r c h i l d r e n have been. Tog e t h e r w i t h v o l u n t e e r g r o u p s , t h e i r e a r l y c o n c e r n f o r c h i l d r e n has been expanded t o i n c l u d e a d u l t s . C o n s e q u e n t l y , and p a r t l y because o f p r e s s u r e , governments have begun t o e x p l o r e ways o f i m p r o v i n g s e r v i c e s t h a t a r e made a v a i l a b l e t o even the most s e v e r e l y r e t a r d e d a d u l t s ( E n i , 1980). The emphasis appears t o be i n t h e d i r e c t i o n o f i n -t e g r a t i n g t h e m e n t a l l y r e t a r d e d back i n t o t h e s o c i e t y . I n many ways, i d e o l o g i c a l p r i n c i p l e s have been used as t h e b a s i s o f s o c i a l p o l i c y and t h i s has grave i m p l i c a t i o n s f o r t h e m e n t a l l y r e t a r d e d , b o t h on p e r s o n a l and on s o c i a l l e v e l s . 1.1.4 S o c i a l F a c t o r s and New I d e o l o g i e s I n d u s t r i a l i z a t i o n , u r b a n i z a t i o n and u n i v e r s a l e d u c a t i o n are s o c i a l t r e n d s and f o r c e s w h i c h have had i m p l i c a t i o n s f o r the m e n t a l l y r e t a r d e d . N e l s o n and C r o c k e r (.1978) s t a t e t h a t " the advent o f an ur b a n , i n d u s t r i a l i z e d s o c i e t y , w i t h i t s emphasis on s k i l l e d l a b o u r and t i m e d p r o d u c t i v i t y , c o n t r a i n e d t h e s o c i a l and economic s e l f - s u f f i c i e n c y o f t h e m e n t a l l y r e t a r d e d p e r s o n . " T e c h n o l o g i c a l advances and t h e c o m p l e x i t y o f l i f e and work have made t h e r e q u i r e m e n t s o f e x i s t e n c e and s u r v i v a l more - 18 -d i f f i c u l t . Labour became more s p e c i a l i z e d , and the c a p r i c i o u s laws o f s u p p l y and demand p r o v i d e d l i t t l e s e c u r i t y and s t a b -i l i t y . O v e r a l l , i n d u s t r i a l i z a t i o n demanded a more i n t e l l i g e n t work f o r c e , and t h i s had p r o f o u n d e f f e c t on t h e l e s s i n t e l l i g e n t . As man became i n c r e a s i n g l y u r b a n i z e d a l o n g w i t h i n d u s -t r i a l i z a t i o n , f u r t h e r changes o c c u r r e d i n l i f e s t y l e s . C i t y l i f e became more complex e s p e c i a l l y w i t h i n s m a l l e r c o n f i n e s . I t r e q u i r e d knowledge o f how t o s e t the c l o c k , judgement about the r i g h t t i m e , a b i l i t y t o r e a d c o m p l i c a t e d bus s c h e d u l e s , f i l l i n g o f j o b a p p l i c a t i o n s and i n t e r v i e w s . I n o t h e r words, the r e q u i r e m e n t s o f u r b a n i z e d , i n d u s t r i a l environment demanded more d i f f i c u l t s e t o f s k i l l s and a b i l i t i e s . T h e r e f o r e t h e a d a p t i v e p o t e n t i a l s o f t h e l e s s i n t e l l i g e n t p e o p l e a re t e s t e d more f r e q u e n t l y and more s t r i n g e n t l y i n modern environment. W i t h i n d u s t r i a l i z a t i o n , t h e r e was need f o r e d u c a t i o n w h i c h , i n t u r n , r e q u i r e d i n t e l l i g e n c e . T h i s f u r t h e r made t h e r e q u i r e m e n t s f o r e x i s t e n c e more complex and d i f f i c u l t . W i t h t h e e s t a b l i s h m e n t o f mass e d u c a t i o n , t h e p l i g h t of the slow l e a r n e r f i r s t became r e c o g n i z e d , hence t h e development o f i n t e l l i g e n t t e s t s and the concept o f s p e c i a l e d u c a t i o n move-ment. F o r t h e s o c i a l c o n t r a c t s o f democracy t o work, man has t o be ed u c a t e d . E d u c a t i o n was no l o n g e r a p r i v i l e g e o r l u x u r y o f t h e r i c h and w e l l b o r n , i t has become a n e c e s s i t y and b i r t h -r i g h t o f a l l c i t i z e n s . I n r e c e n t y e a r s t h e r e has been major changes i n the p h i l o s o p h y r e g a r d i n g t h e c a r e o f t h e handicapped o r t h e - 19 -r e t a r d e d . The n o t i o n o f asylum o r i n s t i t u t i o n has i n c r e a s i n g l y been abandoned w i t h a concommitant i n c r e a s e on community c a r e i n v a r i o u s a l t e r n a t i v e s e t t i n g s ( B r u i n i n k s e t a l , 1980). These a l t e r n a t i v e s e t t i n g s a re ex p e c t e d t o breakdown t h e s o c i a l and economic w a l l s t h a t i s o l a t e the r e t a r d e d from m e a n i n g f u l e x p e r i e n c e and l e a r n i n g . Some o f t h e s e s e t t i n g s o r i d e o l o g i e s have been d e s c r i b e d as m e d i c a l , i n d e p e n d e n t , consumer o r i e n t e d , i n t e g r a t i v e o r n o r m a l i z i n g . The m e d i c a l i d e o l o g y was the f i r s t t o e v o l v e and has dominated over the y e a r s . The f o c u s i s on e l i m i n a t i n g o r r e d u c i n g an i n d i v i d u a l ' s d i s a b i l i t y and i s t i e d t o the u t i l i -t a r i a n , d e p e n d e n c y - p r o d u c t i v e model ( S a f i l i o s - R o t h s c h i l d , 1970). The g o a l i s improved p e r f o r m a n c e , b e h a v i o u r o r work, and encompasses d i a g n o s i s and t r e a t m e n t (Tepperman & Timeny, 1979) . W i t h i n the l a s t few decades, emphasis has been p l a c e d on the r e s t o r a t i o n o f as much independence as p o s s i b l e t o en a b l e t h e d i s a b l e d t a k e t h e r e s p o n s i b i l i t y f o r c a r e and t o become more a c t i v e (Anderson, ,,1978) . T h i s i d e o l o g y does not p l a c e the d i s a b l e d i n t o a c a t e g o r y where they a re e x p e c t e d t o adapt t o s o c i e t y o r t o r e t u r n t o normal o r t o work. More r e c e n t l y , i n t h e U n i t e d S t a t e s and Canada, d i s a b l e d consumers have s t a r t e d t o s u b s c r i b e t o t h e i r own i n t e r p r e t -a t i o n s i n which s e r v i c e s and independent l i v i n g a r e m u t u a l l y - 20 -e x c l u s i v e . The i n t e g r a t i v e i d e o l o g y i m p l i e s t h a t d i s a b l e d p e r s o n s be i n t e g r a t e d i n t o t h e s o c i a l and economic mainstream o f s o c i e t y a l o n g s i d e t h e a b l e b o d i e d . I t seeks t o d i s c o n t i n u e t h e s e g r e g a t i o n o f t h e handicapped i n t o s e p a r a t e groups ( F a l t a , 1976). However, t h e i d e o l o g y w h i c h has a t t r a c t e d c o n s i d e r a b l e a t t e n t i o n everywhere i n c l u d i n g B r i t i s h C olumbia i s the " n o r m a l i z a t i o n i d e o l o g y . " T h i s i d e o l o g y i s t h e b a s i s o f p u b l i c p o l i c y i n B r i t i s h Columbia i n t h e l a s t f i v e y e a r s and a s o u r c e o f p u b l i c debate w i t h r e s p e c t t o s e r v i c e s f o r t h e m e n t a l l y r e t a r d e d . 1.2 N o r m a l i z a t i o n I d e o l o g y Over t h e p a s t t e n y e a r s , t h e r e has been a s t r o n g and p e r -s i s t e n t movement t o p r o v i d e more normal e x p e r i e n c e s f o r m e n t a l l y r e t a r d e d p e r s o n s . T h i s movement has been l a r g e l y based on t h e p r i n c i p l e ^ o f " n o r m a l i z a t i o n " ( N i r j e , 1969). I t means; making a v a i l a b l e t o t h e m e n t a l l y r e t a r d e d , p a t t e r n s and c o n d i t i o n s o f everyday l i f e w h i c h are as c l o s e as p o s s i b l e t o t h e norms and p a t t e r n s o f the mainstream o f s o c i e t y . 5. An o r g a n i z a t i o n o f m e n t a l l y r e t a r d e d a d u l t s i n B r i t i s h C olumbia known as "People F i r s t " o r g a n i z a t i o n s u b s c r i b e t o t h i s model as w e l l as t o o t h e r i d e o l o g i e s which g i v e them r e s p o n s i b i l i t y f o r t h e i r a f f a i r s . 6. The terms " p r i n c i p l e " and " i d e o l o g y " a r e used i n t e r c h a n g e -a b l y i n t h i s t h e s i s . - 21 -Services for the retarded i n Scandinavia where normalization p r i n c i p l e has been more firmly embodied i n t h e i r ideology have been used as model for the development of services i n North America. Smaller "integrated" f a c i l i t i e s are being developed i n conjunction with plans for d e - i n s t i t u t i o n a l i z a t i o n . School systems have adopted "integration" or "mainstreaming" p o l i c i e s and e f f o r t s are being made to provide non-sheltered 7 employment for handicapped people (Gottleib, 1975). These r e l a t i v e l y new developments are being undertaken to enable the mentally retarded lead as normal a l i f e as possible. Towards g t h i s end, the needs of mentally handicapped people are seen as b a s i c a l l y s i m i l a r to those of ordinary people with the difference that they may not be able to meet these needs un-aided or as independently as other people can; and that they may have additional needs (Jay, 1979) . The argument i s that mentally handicapped persons do not have to l i v e separately from others i n order to meet t h e i r needs; or that special services they need should be provided i n places where they l i v e , such as the i n s t i t u t i o n , but could be met through the general medical and s o c i a l services as are other people's special requirements. 7. The term "integration" i s used i n Great B r i t a i n while "mainstreaming" i s more commonly used i n the United States. 8. The word handicapped i s used here to include the mentally i l l for whom the p r i n c i p l e of normalization i s also advocated. - 22 -The term " n o r m a l i z a t i o n " can mean d i f f e r e n t t h i n g s t o d i f f e r e n t p e o p l e . Some p e o p l e see i t as a commitment t o a normal l i f e s t y l e " w i t h i n the community" and t h e r i g h t t o be t r e a t e d as an i n d i v i d u a l ( J a y , 1979). From t h e s e i n t e r p r e t -a t i o n s come t h e recommendations f o r a f l e x i b l e system of s m a l l group l i v i n g , and an end t o t h e d o m i n a t i o n o f n u r s i n g c a r e . O t h e r s propound t h e i d e a o f a h o s p i t a l as a n o r m a l i z i n g en-vir o n m e n t "which w h i l s t n o t normal i n i t s e l f w i l l n e v e r t h e l e s s h e l p t o n o r m a l i z e people" (G-unzburg, 1973). B u t many o f t h e advoca t e s o f n o r m a l i z a t i o n m a i n t a i n t h a t "a p e r s o n i s a p e r s o n f i r s t , t h e h a n d i c a p i s secondary" ( N i r j e , 1976), and t h a t t h e r e t a r d e d "are o r d i n a r y p e o p l e who must have r i g h t s and d u t i e s s i m i l a r t o t h o s e o f e v e r y o t h e r c i t i z e n " ( B a n k - M i k k e l s o n , 1976). The a s s e r t i o n t h a t m e n t a l l y handicapped p e o p l e s h o u l d have e q u a l r i g h t s w i t h a l l o t h e r c i t i z e n s o f t e n has a h o l l o w r i n g t o i t . The U n i t e d N a t i o n s d e c l a r a t i o n o f the r i g h t s o f m e n t a l l y handicapped p e o p l e w h i c h i n c l u d e s t h e i r r i g h t t o s p e c i a l s e r v i c e s and adequate c a r e and t r e a t m e n t , s i m p l y poses t h e q u e s t i o n : who i s g o i n g t o implement t h e s e r i g h t s and how? F o r example, a r i g h t t o e q u a l pay f o r women w i l l be o f l i t t l e c o n c r e t e b e n e f i t i f t h e r e a r e no a v a i l a b l e j o b s , o r i n a d e q u a t e p r o v i s i o n f o r c h i l d - c a r e s e r v i c e s t o ensure a b i l i t y t o use any improved o p p o r t u n i t i e s they are p r e s e n t e d w i t h . The i m p l i c -a t i o n f o r t h e m e n t a l l y r e t a r d e d w i l l be t o ensure t h a t they a r e a c t u a l l y a b l e t o use s e r v i c e s and t h a t t h e r e i s adequate human and s o c i a l s u p p o r t f o r them t o do so. There i s a l s o t h e r i g h t t o make i n f o r m e d c h o i c e o f o c c u p a t i o n , o f f r i e n d s , - 23 -of l e i s u r e a c t i v i t i e s o r o f l i f e - s t y l e . The i m p l e m e n t a t i o n o f such r i g h t s would make g r e a t demands on the a t t i t u d e s and r e s p o n s e s o f an i n c r e a s e d number o f p e o p l e who would, e i t h e r , v o l u n t a r i l y o r a c c i d e n t a l l y , come i n con-t a c t w i t h m e n t a l l y r e t a r d e d p e o p l e . I t would a l s o u n d o u b t e d l y r e q u i r e more money b e i n g spent on t h e m e n t a l l y r e t a r d e d . The q u e s t i o n o f f i n a n c i a l c o s t has been one wh i c h many r e f o r m i n g groups have e i t h e r dodged o r t r i e d t o prove t h a t t h e i r p r o -p o s a l would n o t c o s t any more th a n p r e s e n t i n s t i t u t i o n a l 9 arrangement. O t h e r s have argued t h a t w i t h i n t h e terms o f w e l f a r e economics, i n c r e a s e d i n v e s t m e n t i n t h e t r a i n i n g o f the m e n t a l l y handicapped would b r i n g l o n g - t e r m economic b e n e f i t s from t h e wages they would e v e n t u a l l y e a r n and t h e i r c o n t r i b u t i o n t o t h e t o t a l economy (Conley, 197 3 ) . The term " n o r m a l i z a t i o n " has a l s o been accompanied by ph r a s e s such as " e q u a l i t y o f o p p o r t u n i t y , " o r "human d i g n i t y and r e s p e c t " ( W o l f e n s b e r g e r , 1972; N e u f e l d , 1980). These a s s o c i a t e d p h r a s e s g e n e r a l l y t e n d t o r a i s e q u e s t i o n s o f e t h i c s o r m o r a l i t y , b u t i n s p e c i f i c t e r m s , the b o u n d a r i e s a r e not q u i t e c l e a r . T h i s i s e s p e c i a l l y t r u e when t h e r e i s an attempt t o d e t e r m i n e "what i s normal." D i f f e r e n t s o c i e t i e s have 9. T h i s i s t h e p o s i t i o n o f t h e B r i t i s h Columbia A s s o c . f o r t h e M e n t a l l y R e t a r d e d (BCAMR) and t h e Community L i v i n g S o c i e t y , (CLS). See Annual C o n f e r e n c e R e p o r t s , BCAMR 1976 - 1980. A l s O , see f o o t n o t e 24. - 24 -d i f f e r e n t shades o r n o r m a l i t y . What i s "normal" i n a g i v e n s o c i e t y o r c u l t u r e may be d e v i a n t i n a n o t h e r . T h i s i s s u e i s examined i n more d e t a i l i n Ch a p t e r 2.0. I n more s p e c i f i c t e r m s , W o l f e n s b e r g e r (1972) and Gunzburg (1973) r e l a t e n o r m a l i z a t i o n t o p a r t i c u l a r e n v i r o n -ments. I t i s r e g a r d e d as " c u l t u r e s p e c i f i c , " depending on the p r e v a i l i n g abnormal c i r c u m s t a n c e s t h a t need t o be normal-i z e d . T h e r e f o r e i t i s i m p o r t a n t t o det e r m i n e what i s and what i s n o t normal i n a g i v e n s o c i e t y , o r community. W o l f e n s b e r g and Glenn (1975) o u t l i n e d f o u r d i m e n s i o n s o f n o r m a l i z a t i o n i d e o l o g y f o r p r a c t i c a l p u r p o s e s . These are d i s -c u s s e d i n g r e a t e r d e t a i l i n Chapter 2.0. I n essence t h e y a r e (a) n o n - d e v i a n t s o c i a l i n t e r p r e t a t i o n s , (b) n o n - d e v i a n t s t r u c t u r e s , (c) s o c i a l and p h y s i c a l i n t e g r a t i o n , and (d) p r o v i s i o n o f human r i g h t s . The f i r s t t h r e e dimensions a r e c e n t r a l t o t h i s s t u d y . The f o u r t h d i m e n s i o n - human r i g h t -has n o t been measured, b u t has been a n a l y s e d under a g e n e r a l framework f o r p o l i c y a n a l y s i s t o g e t h e r w i t h the i m p l i c a t i o n s o f n o r m a l i z a t i o n . 1.3 The I s s u e i n B r i t i s h C olumbia I n B r i t i s h C o l u m b i a , as i n d e e d i n N o r t h A m e r i c a , the k i n d o f a t t e n t i o n g i v e n t o p e o p l e who e x h i b i t m e n t a l d i s o r d e r and d e v i a n c e has been a f u n c t i o n o f t h e way i n whi c h t h e i r be-h a v i o u r has been c a t e g o r i z e d . Warham (1973) o b s e r v e s t h a t c a t e g o r i z a t i o n may be e s s e n t i a l t o what e q u a l i t y can mean i n - 25 -p r a c t i c e and t h e p u r s u i t o f i t as a s o c i a l g o a l . I t makes and remakes d i s t i n c t i o n s between c a t e g o r i e s o f p e o p l e and c a t e g o r i e s o f need i n r e l a t i o n t o each o t h e r . Attempts t o meet the needs o f t h e m e n t a l l y r e t a r d e d went hand i n hand w i t h e f f o r t s on b e h a l f o f t h e i n s a n e . Those who d i d n o t s t a y w i t h t h e i r f a m i l i e s were s e n t t o the "asylum," o r i g i n a l l y a p l a c e o f s a f e t y f o r the l e s s w e l l t o do. F a m i l i e s w i t h s u f f i c i e n t means s e n t t h e i r r e t a r d e d members t o p r i v a t e n u r s i n g homes (Armour, 1979). I n a l l r e s p e c t s t h e g e n e r a l a t t i t u d e o f the Canadian and B r i t i s h Columbian S o c i e t y p a r a l l e l e d t h o s e o f t h e i r con-t e m p o r a r i e s i n B r i t a i n and t h e U n i t e d S t a t e s w i t h r e s p e c t t o the m e n t a l l y i l l and t h e m e n t a l l y r e t a r d e d . 1.3.1 P o l i c y Development: 1 M e d i c a l As has been noted e a r l i e r , t h e problem o f c o p i n g w i t h m e n t a l a b n o r m a l i t y i s demonstrated by changes over t i m e . These changes have o s c i l l a t e d from c o n d i t i o n s o f s u p p o r t t o t h o s e o f c o n t r o l . B a t es (1977) and Armour (1979) r e c a l l t h a t i n i t i a l l y , t h e r e was no c o n c e r t e d p o l i c y f o r the m e n t a l l y r e t a r d e d as a group i n Canada o r i n B r i t i s h C o l u m b i a . Such p e r s o n s were f i r s t h i d d e n by t h e i r f a m i l i e s (Armour, 19 79) and then housed i n i n s t i t u t i o n s w h i c h had been l o c a t e d away from th e main-stream o f s o c i e t y ( B a t e s , 1977). P r i o r t o 1974, m e n t a l l y r e t a r d e d p e r s o n s i n B r i t i s h - 26 -Col u m b i a , as i n t h e r e s t o f Canada, were made t h e r e s p o n s i b -i l i t y o f t h e M i n i s t r y o f H e a l t h under t h e M e n t a l H e a l t h A c t . 1 ^ The p r e v a i l i n g p o l i c y c o n s i d e r a t i o n s d i d not d i f f e r e n t i a t e t h e m e n t a l l y i l l from t h e m e n t a l l y r e t a r d e d . Under t h e u m b r e l l a o f t h e M i n i s t r y of H e a l t h , t h e f o c u s o f s e r v i c e s was t r e a t m e n t o r i e n t e d as w e l l as c u s t o d i a l . B oth t h e i l l and t h e r e t a r d e d were housed c o l l e c t i v e l y a t t h e p r o v i n c i a l p s y c h i a t r i c h o s p i t a l a t E s s o n d a l e , now known as R i v e r v i e w . C o n s e q u e n t l y , the ment-a l l y i l l were a d m i t t e d t h r o u g h t h e p r o v i n c i a l m e n t a l h e a l t h h o s p i t a l . However, t h e passage o f t h e S c h o o l M e n t a l D e f e c t i v e s A c t i n 1953"'""'" e n a b l e d a l l m e n t a l l y r e t a r d e d persons t o be a d m i t t e d 12 d i r e c t l y t o Woodlands. B a t e s (1977) obser v e d t h a t t h e r e was r a p i d growth i n t h e p o p u l a t i o n of Woodlands l e a d i n g t o l o n g w a i t i n g l i s t s f o r c h i l d r e n and a d u l t s and t h e development o f two o t h e r p r o v i n c i a l i n s t i t u t i o n s . There a r e two i m p o r t a n t o b s e r v a t i o n s t o be made d u r i n g 10. M e n t a l H e a l t h A c t . S t a t u t e of B r i t i s h Columbia 1964. 11. S c h o o l f o r M e n t a l D e f e c t i v e s A c t . S t a t u t e o f B r i t i s h C olumbia 1953. 12. Woodlands, t h e l a r g e s t and o l d e s t o f t h e t h r e e p r o v i n c i a l i n s t i t u t i o n s was opened i n 1919 " t o e d u c a t e , t r a i n and s o c i a l i z e t h o s e under our c a r e , and t o have them h e a l t h y , happy and c o n t e n t e d . . . " ( B a t e s , 1977). Woodlands has been t h e f o c u s f o r r e f o r m i n B r i t i s h Columbia by t h e v o l u n t e e r and advocate groups. O t h e r s i n s t i t u t i o n s a r e G l e n d a l e near V i c t o r i a and T r a n q u i l l e i n Kamloops. - 27 -t h i s p e r i o d . The f i r s t i s t h e i n v o l v e m e n t o f h e a l t h a g e n c i e s and t h e m e d i c a l p r o f e s s i o n , a l m o s t e x c l u s i v e l y , i n t h e d i a g -n o s i s t r e a t m e n t and i n s t i t u t i o n a l i z a t i o n o f m e n t a l l y r e t a r d e d p e r s o n . The second i s t h e i n t e n t t o s h i f t from m e d i c a l i n -volvement t o e d u c a t i o n a l i n v o l v e m e n t . The i n v o l v e m e n t o f t h e m e d i c a l p r o f e s s i o n has been des-c r i b e d as t h e " m e d i c a l i z a t i o n " o f me n t a l r e t a r d a t i o n (Ryan and Thomas, 1980, R o w i t z , 1981). The term " m e d i c a l i z a t i o n " r e f e r s t o d e f i n i n g b e h a v i o u r as a m e d i c a l problem o r i l l n e s s and man-d a t i n g t h a t t h e m e d i c a l p r o f e s s i o n p r o v i d e some k i n d o f t r e a t -ment (Conrad, 1975). T h i s concept i m p l i e s t h a t s o c i o l o g i c a l l y o r p s y c h o l o g i c a l l y based problems can be d e f i n e d as m e d i c a l problems. Fox (1977) c o n n e c t s t h e i n c r e a s e i n m e d i c a l i z a t i o n t o such f a c t o r s as the s o - c a l l e d m e d i c a l m y s t i q u e o f p h y s i c i a n s , t h e b i o t e c h n o l o g i c a l c a p a c i t i e s o f modern m e d i c i n e , and t h e i n f l u e n c e o f t h e m e d i c a l p r o f e s s i o n . Ryan and Thomas (1980) argue t h a t m e d i c i n e - i t ' s i n s t i t u t i o n s , p e r s o n n e l , c o n c e p t s and modes o f e x p l a i n i n g b e h a v i o u r - has been t h e main i n s t r u -ment f o r e x c l u d i n g m e n t a l l y handicapped p e r s o n s from s o c i e t y ^ t h a t the m e d i c a l model o f t h i n k i n g tends t o s u p p o r t the s t a t u s quo by f o c u s s i n g on the s u b n o r m a l i t y o f t h e i n d i v i d u a l r a t h e r t h a n t h e s u b n o r m a l i t y o f t h e environment. The passage o f t h e S c h o o l f o r M e n t a l D e f e c t i v e s A c t i n 1953 appears as an attempt t o s e p a r a t e t h e r e t a r d e d from t h e i l l toward t h e " e d u c a t i o n a l i z a t i o n " o f the m e n t a l l y r e t a r d e d . T h i s attempt seems t o be an i n d i c a t i o n from t h e p r o v i n c i a l - 28 -government t h a t r e t a r d a t i o n may not mean i l l n e s s . But i n 1964, m e n t a l l y r e t a r d e d persons were brought under the Mental H e a l t h Act (note 10), although they have always been kept i n "asylums" w i t h the m e n t a l l y i l l . T h i s seems to be a r e v e r s a l of the i n -t e n t of the School f o r Mental D e f e c t i v e s A c t of 1953. The p o l i c y by which mental r e t a r d a t i o n s e r v i c e s was ad-m i n i s t e r e d under the Mental H e a l t h Act or made the r e s p o n s i b -i l i t y of the M i n i s t r y of H e a l t h , may be d e s c r i b e d as c l i n i c o -medical as w e l l as c u s t o d i a l . Although the i n f l u e n c e of e d u c a t i o n i s t s was being f e l t a t the time i n B r i t i s h Columbia, n e v e r t h e l e s s the bulk of o r i e n t a t i o n f o r care was e s s e n t i a l l y m e d i c a l . In a review of developments i n mental r e t a r d a t i o n i n Canada from 1964 t o 1970, Mooney (1971) observed apparent i n c o n s i s t e n c y i n B r i t i s h Columbia. He observed t h a t p r o v i n c i a l i n s t i t u t i o n s appeared t o be moving from the " m e d i c o - c u s t o d i a l concepts and programs to e d u c a t i o n a l concepts and t r a i n i n g . " He a l s o noted t h a t a s p e c i a l d i v i s i o n w i t h r e s p o n s i b i l i t y f o r mental r e t a r d a t i o n but p a r a l l e l t o mental h e a l t h s e r v i c e s d i v i s i o n had a l s o been c r e a t e d w i t h the i n t r o d u c t i o n of the Mental H e a l t h A c t . L a t e r , Bates (1977) w i l l argue t h a t i n s t i t u t i o n a l t r a n s i t i o n from m e d i c a l to e d u c a t i o n and t r a i n -i n g concepts d i d not q u i t e take p l a c e to any meaningful l e v e l . 1.3.2 P o l i c y Development: S o c i a l C o n s i s t e n t w i t h the t r e n d toward n o r m a l i z a t i o n and i n -t e g r a t i o n i d e o l o g i e s i n the e a r l y 70's, governments i n Europe, U n i t e d S t a t e s of America and Canada began t o c o n s i d e r new - 29 -p o l i c i e s w i t h w h i c h t o p r o v i d e m e n t a l r e t a r d a t i o n s e r v i c e s . I n i t i a l e f f o r t had been d i r e c t e d g e n e r a l l y towards t h e w e l f a r e o f c h i l d r e n . I n G r e a t B r i t a i n , t h e e f f o r t w h i c h began i n 194 8 w i t h the C h i l d r e n ' s A c t , c u l m i n a t e d i n t h e recommendations o f t h e Warnock Committee i n 1978 and i t s a c c e p t a n c e by t h e government i n 1980. The C h i l d r e n ' s A c t had g i v e n l o c a l a u t h o r i t i e s d u t y t o r e t u r n c h i l d r e n t o t h e i r own homes wherever p o s s i b l e . The Warnock Committee proposed t h e e x t e n s i o n o f t h e concept o f s p e c i a l e d u c a t i o n need and t h e 13 a b o l i t i o n o f s t a t u t o r y c a t e g o r i e s o f handicapped c h i l d r e n . S h e a r e r (1980) a n a l y s e d t h e e f f o r t s t o address the i s s u e o f handicapped c h i l d r e n i n G r e a t B r i t a i n and came t o the con-c l u s i o n t h a t t hey r e p r e s e n t p o l i c y f a i l u r e . I t was not u n t i l t h e R e p o r t o f the J a y Committee (1979) t h a t t h e needs o f h a n d i -capped a d u l t s began t o be s e r i o u s l y c o n s i d e r e d . E f f o r t s i n G r e a t B r i t a i n p a r a l l e l t h o s e i n the U n i t e d S t a t e s . The E d u c a t i o n f o r A l l Handicapped C h i l d r e n ' s A c t of 1975 e n a b l e s t h e "mainstreaming" of a l l c h i l d r e n i n c l a s s -rooms, i n t h e U n i t e d S t a t e s o f A m e r i c a . I n Canada, a major s t u d y t i t l e d "One M i l l i o n C h i l d r e n " 13. The Rep o r t o f the Committee o f E n q u i r y i n t o t h e Educ-a t i o n o f Handicapped C h i l d r e n and Young P e o p l e : ( S p e c i a l E d u c a t i o n Needs) a l s o examined and recommended the "concept o f I n t e g r a t i o n ; " and Government a c c e p t e d the recommendations i n a s p e c i a l w h i t e paper t i t l e d : S p e c i a l Needs i n E d u c a t i o n w h i c h was p r e s e n t e d t o p a r l i a m e n t i n August 1980. - 30 -e x h a u s t i v e l y l o o k e d a t problems and s e r v i c e s f o r handicapped 14 c h i l d r e n . However, i t was a Re p o r t t o t h e government o f Ma n i t o b a i n 1973 w h i c h appears t o have i n f l u e n c e d s e r v i c e s f o r m e n t a l l y handicapped a d u l t s . C l a r k s o n (1973) l o o k e d a t M e n t a l H e a l t h and R e t a r d a t i o n S e r v i c e s i n M a n i t o b a and recommended t h a t m e n t a l r e t a r d a t i o n programs s h o u l d be: (a) s e p a r a t e from m e n t a l h e a l t h programs, (b) r e g i o n a l i z e d , (c) d e c e n t r a l i z e d from t h e i r i n s i t u t i o n a l b a s e , and (d) d e v e l o p e d i n l o c a l communities. He a l s o r e -commended a new M e n t a l R e t a r d a t i o n A c t , s e p a r a t e from M e n t a l H e a l t h A c t w h i c h s h o u l d d e f i n e t h e l e g a l s t a t u s o f t h e r e -t a r d e d . The Repo r t went f u r t h e r t o suggest t h e i n v o l v e m e n t o f t he v o l u n t e e r s e c t o r i n t h e development and e x p a n s i o n o f f a c i l i t i e s . The C l a r k s o n R e p o r t was made a t a time when the i d e o l o g y o f n o r m a l i z a t i o n has begun t o emphasize t h e importance o f the t o t a l e n v i r o n m e n t , and how i n s i t u t i o n a l e nvironments c o n t r i b u t e t o t he burden o f b e i n g handicapped ( W o l f e n s b e r g e r , 1972). The needs o f r e t a r d e d p e r s o n s a r e i n c r e a s i n g l y b e i n g seen as s i m i l a r t o t h o s e o f o r d i n a r y p e o p l e . There may be a d d i t i o n a l needs w h i c h r e q u i r e a s s i s t a n c e o r s p e c i f i c s e r v i c e s . Some 14. One M i l l i o n C h i l d r e n : Commission on the E d u c a t i o n , L e a r n i n g D i s a b i l i t y and R e h a b i l i t a t i o n i n C h i l d r e n . CELDRIC R e p o r t sponsored by seven n a t i o n a l o r g a n i z -a t i o n s f o r d i s a b l e d c h i l d r e n i n Canada. BCAMR, 1970. - 31 -needs may involve normal access to s o c i a l , emotional and sexual relationships; normal growing up experiences; the p o s s i b i l i t y of decently paid work; or choice and p a r t i c i p a t i o n i n decisions a f f e c t i n g t h e i r future. In general, i t would appear that the thrust of the normalization movement i s consideration for s o c i a l and in d i v i d u a l needs of mentally handicapped persons. 1.3.3 Human Resources Takeover In 1974, the r e s p o n s i b i l i t y for mental retardation i n B r i t i s h Columbia was transferred from the Ministry of Health 15 to the Department of Human Resources. Consequently, mental retardation i n s t i t u t i o n s and f a c i l i t i e s were released from 16 the prescriptions of the Mental Health Act. In e f f e c t , the transfer of r e s p o n s i b i l i t y from Health to Human Resources re-presents a s h i f t i n public p o l i c y from one of Clinico-Medical-Custodial model to integrative - Social Systems model. One reason for the change i n po l i c y as stated i n the Department's Annual Report (1975) i s : a growing public awareness that retardation i s not an i l l n e s s , and that t r a i n i n g i n Social s k i l l s i s the ^ single most important emphasis i n service delivery. 15. The Dept..of Human Resources became the Ministry of Human Resources i n 197 5. 16. This was achieved through an Order i n Council B.C. Reg. 416/74. 17. Other reasons relate to federal cost sharing arrangement for - s o c i a l services as well as a need to organize separate services. - 32 -The o b j e c t i v e s of t h e Department a r e s t a t e d as f o l l o w s : t o p r o v i d e t h e o p p o r t u n i t y f o r e v e r y m e n t a l l y r e t a r d e d p e r s o n t o a c h i e v e h i s o r h e r maximum p o t e n t i a l . The r e t a r d e d a d u l t w i l l have a r i g h t t o economic s e c u r i t y and o p p o r t u n i t y t o engage i n m e a n i n g f u l o c c u p a t i o n as d e t e r m i n e d by h i s o r her c a p a b i l i t y . D e p a r t m e n t a l s e r v i c e s i n c l u d i n g t h o s e f o r r e t a r d e d p e r s o n s a r e t o be seen as b e i n g a v a i l a b l e t o a l l c i t i z e n s o f the p r o v i n c e based on need r a t h e r t h a n on a l a b e l o r c a t e g o r y . I n 1976, the M i n i s t r y o f Human Resources a p p l i e d t h e word " n o r m a l i z a t i o n " i n r e f e r r i n g t o t h e i n t e r e s t s o f m e n t a l l y r e -t a r d e d p e r s o n s i n B r i t i s h C olumbia, and has c o n t i n u e d t o r e -18 gard n o r m a l i z a t i o n o f s e r v i c e s as i t s o b j e c t i v e . F u r t h e r -more, i n 1980, the M i n i s t r y p u b l i s h e d an I n v e n t o r y o f S e r v i c e s t o Handicapped C h i l d r e n and A d u l t s and i n d i c a t e d commitment t o : (a) p r o v i d e f u l l range o f M i n i s t r y s e r v i c e s t o b o t h the r e t a r d e d a d u l t and t h e handicapped c h i l d and t h e i r f a m i l i e s , (b) e n a b l e t h e g r e a t e s t number o f r e t a r d e d a d u l t s t o l i v e i n t h e i r communities i n t h e l e a s t r e s t r i c t i v e environment t h a t w i l l most f u l l y meet t h e i r needs and enhance t h e i r independent f u n c t i o n i n g . The document a l s o s t a t e d t h a t : — no r e t a r d e d p e r s o n s h o u l d be a d m i t t e d t o Woodlands whose needs can be met i n h i s own community, and no one s h o u l d remain i n t h e i n s t i t u t i o n once h i s needs can be met e l s e w h e r e . These p o l i c y s t a t e m e n t s i n d i c a t e : (a) commitment t o 18. The r e f e r e n c e f i r s t appeared i n t h e An n u a l R e p o r t o f 1976 and has c o n t i n u e d t o appear s i n c e t h e n . - 33 -d e - i n s t i t u t i o n a l i z e Woodlands f a c i l i t y , (b) t h e r e t u r n i n g o f p r e v i o u s l y i n s t i t u t i o n a l i z e d p e r s o n s t o t h e i r home communities, (c) the development of community based s e r v i c e s , and (d) t h e p r o v i s i o n o f s e r v i c e s a c c o r d i n g t o i n d i v i d u a l needs. The t h r u s t o f p o l i c y o b j e c t i v e s appear t o move s t r o n g l y i n the d i r e c t i o n o f a s o c i a l system o f s e r v i c e s and away from t h e c l i n i c o - c u s t o d i a l system. T h e r e f o r e , t h e e x p e c t a t i o n would be t h a t community based s e r v i c e s under the new s o c i a l systems model w i l l be s i g n i f i c a n t l y d i f f e r e n t from th e m e d i c a l model o f d e l i v e r y and much improved q u a l i t a t i v e l y . Such i s t h e b a s i s o f assumptions i n t h i s s t u d y . However, the r e l e a s e o f t h e i n s t i t u t i o n s f o r t h e r e t a r d e d from the p r e s c r i p t i o n s o f t h e M e n t a l H e a l t h A c t was not c o u p l e d w i t h a new s e t o f l e g i s l a t i v e g u i d e l i n e s . The i n s t i t u t i o n s , more o r l e s s , o p e r a t e d i n a " l e g a l vacuum" u n t i l 1976 when the Guaranteed A v a i l a b l e Income f o r Need A c t - G.A.I.N. - was p a s s e d . The A c t c o n s o l i d a t e d i n One A c t , t h e income a s s i s t a n c e 19 and s o c i a l s e r v i c e s l e g i s l a t i o n . T h i s t r a n s l a t e d i n t o s p e c i f y i n g what k i n d s o f s e r v i c e s the p r o v i n c e i s w i l l i n g t o s u p p o r t f i n a n c i a l l y i n o r d e r t o h e l p t h e needy. The p o l i c y p r o v i s i o n s w h i c h c o n c e r n income a s s i s t a n c e under 19. The GAIN A c t and i t s accompanying R e g u l a t i o n s - B.C. Reg. 479/76 p r o v i d e minimum income t o t h e h andicapped, c i t i z e n s over 60 y r s o f age }and s o c i a l s e r v i c e s such as r e s i d e n t i a l c a r e and r e h a b i l i t a t i o n s e r v i c e s . - 34 -GAIN l e g i s l a t i o n r e l a t e t o t h e g e n e r a l e l i g i b i l i t y o f r e t a r d e d i n d i v i d u a l s f o r a s s i s t a n c e under t h e r u b r i c o f handicapped p e r s o n s . F i r s t , a m e n t a l l y r e t a r d e d p e r s o n s h o u l d be c e r t i f i e d as a handicapped i n d i v i d u a l by a p h y s i c i a n a l t h o u g h he o r she may not be r e q u i r e d t o undergo m e d i c a l t r e a t m e n t . Second, an e l i g i b l e i n d i v i d u a l must have ex h a u s t e d a l l avenues o f t r e a t -ment and/or r e h a b i l i t a t i o n as w e l l as a c t i v e l y sought employment. I n p r a c t i c e t h i s p r o v i s i o n may be r e l a x e d somehow f o r m e n t a l l y r e t a r d e d p e r s o n s . T h i r d , i n s t i t u t i o n a l p e rsons a re n o t e l i g -i b l e t o r e c e i v e income a s s i s t a n c e b u t may r e c e i v e c o m f o r t s 20 a l l o w a n c e and some are p r o v i d e d w i t h cash f o r p e r s o n a l c l o t h -i n g p u r p o s e s . On t h e o t h e r hand, income a s s i s t a n c e i s p r o -v i d e d t o e l i g i b l e r e t a r d e d persons who l i v e i n d e p e n d e n t l y i n the community, o r who l i v e i n p r i v a t e l y funded f a c i l i t i e s where the c o s t o f c a r e , p l u s a c o m f o r t s a l l o w a n c e i s l e s s t h a n the income a s s i s t a n c e g r a n t e d as handicapped p e r s o n s ' b e n e f i t s . The Community Resources Board A c t o f 1974 and the Human Resources Development A c t o f 1969 a r e two s t a t u t e s w h i c h r e -l a t e t o i n s t i t u t i o n a l p e rsons i n s o f a r as t h e y a f f e c t t h e p o s s i b i l i t y o f t h e s e persons moving back t o t h e community. The f i r s t A c t was r e p e a l e d by t h e i n t r o d u c t i o n o f t h e GAIN A c t . The second A c t a u t h o r i z e s payment o f a g r a n t t o a m u n i c i p a l i t y , an i n c o r p o r a t e d s o c i e t y o r a R e g i o n a l Board. 20. The c u r r e n t v a l u e o f Comforts a l l o w a n c e i s ' f i f t y d o l l a r s monthly. - 35 -T h i s p r o v i s i o n e n a b l e s the development o f s e r v i c e s and r e -s o u r c e s i n t h e Community f o r C h i l d r e n and A d u l t s . A c l o s e r l o o k a t t h e GAIN A c t r e v e a l s two i m p o r t a n t p o l i c y o b j e c t i v e s . The f i r s t i s a d e s i r e t o d e v e l o p community r e s o u r c e s f o r C h i l d r e n and A d u l t s . I t s h o u l d be n o t e d t h a t t h e need f o r s e r v i c e s f o r c h i l d r e n i s not as p r e s s i n g as t h o s e f o r a d u l t s s i n c e e f f o r t s i n t h a t d i r e c t i o n have been a d d r e s s e d f o r q u i t e sometime. The second o b j e c t i v e i s t h e maintenance o f c o n t i n u o u s l i n k w i t h t h e m e d i c a l system o f s e r v i c e d e l i v e r y t h r o u g h e l i g i b i l i t y r e q u i r e m e n t s . I n o t h e r words, m e d i c a l e n t r y i n t o GAIN b e n e f i t s would appear t o p r e v e n t c l e a n s e p a r -a t i o n o f the s o c i a l systems mode-1 from t h e c l i n i c o - c u s t o d i a l model. The i s s u e t h e r e f o r e i s whether i n f a c t , a d i f f e r e n c e e x i s t s i n t h e manner s e r v i c e s have been p r o v i d e d under the two p o l i c i e s . 1.4 V o l u n t a r y E f f o r t B a t e s (1977) n o t e s t h a t t h e i n i t i a l v o l u n t a r y e f f o r t i n B r i t i s h Columbia was d i r e c t e d towards th e "advancement o f m e n t a l l y r e t a r d e d c h i l d r e n . " T h i s e f f o r t was o r g a n i z e d by p e rsons who were i n t e r e s t e d i n t h e w e l f a r e o f handicapped c h i l d r e n . I n 1955, t h e A s s o c i a t i o n f o r R e t a r d e d C h i l d r e n came i n t o b e i n g and q u i c k l y expanded t o 63 B r i t i s h Columbia C h a p t e r s by 1976. Q u i t e e a r l y i n i t s h i s t o r y , t h e A s s o c i a t i o n began p r e s e n t i n g b r i e f s t o t h e p r o v i n c i a l government. I n 1959, - 36 -th e P u b l i c S c h o o l s A c t was amended t o p e r m i t S c h o o l Boards t o t a k e over the complete o p e r a t i o n o f c l a s s e s f o r m o d e r a t e l y r e t a r d e d c h i l d r e n . U n t i l 1968, i s s u e s r e g a r d i n g r e t a r d e d a d u l t s were not p r e s s i n g p r i o r i t i e s , as t h e f o c u s o f the A s s o c i a t i o n was c h i l d r e n . However, i n 1968, t h e A s s o c i a t i o n changed i t s name t o B r i t i s h Columbia A s s o c i a t i o n f o r t h e M e n t a l l y R etarded (BCAMR) f o l l o w i n g a s i m i l a r change o f name by the p a r e n t body, t h e Canadian A s s o c i a t i o n f o r t h e M e n t a l l y R e t a r d e d . The same y e a r , t h e P r o v i n c i a l A s s o c i a t i o n passed a R e s o l u t i o n p e t i t i o n -21 i n g t h e p r o v i n c i a l government t o : p r o v i d e c a p i t a l and o p e r a t i n g g r a n t s f o r r e s i d e n t i a l homes f o r r e t a r d e d a d u l t s and c o n t r i b u t e t o s u p p o r t i n g t r a i n i n g s e r v i c e s f o r them. The e x a m i n a t i o n o f the A s s o c i a t i o n ' s A n n u a l Conference R e p o r t s from 1967 t o 1980 r e v e a l s the f o l l o w i n g t r e n d : (a) I n i t i a l p r i o r i t y was c o n c e r n f o r c h i l d r e n . There were v o l u n t a r y a c t i v i t i e s a t t h e p r o v i n c i a l i n s t i t u t i o n - Woodlands -t o p r o v i d e c o m f o r t f o r handicapped c h i l d r e n as w e l l as a s s i s t -ance w i t h the management o f w a i t i n g l i s t s ; (b) developments a t the n a t i o n a l and i n t e r n a t i o n a l scene l e d t o advocacy r o l e 21. The R e s o l u t i o n was passed a t t h e 11th Annual C o n f e r e n c e i n T r a i l , B.C. T h i s was t h e f i r s t i n d i c a t i o n o f co n c e r n f o r r e t a r d e d a d u l t s i n the An n u a l C o n f e r e n c e s s i n c e i t s f o r m a t i o n . - 37 -and c o n c e r n f o r improvement o f l i v i n g c o n d i t i o n s w i t h i n Wood-l a n d s , and l a t e r , w i t h i n o t h e r p r o v i n c i a l i n s t i t u t i o n s ; (c) t h e r e was c o n c e r t e d e f f o r t i n p e t i t i o n i n g and l a t e r p r e s s -i n g the p r o v i n c i a l government t o d e v e l o p community r e s o u r c e s . L a t e r , t h e A s s o c i a t i o n undertook t h e d i r e c t o p e r a t i o n o f com-munity s e r v i c e s f o r c h i l d r e n such as r e s i d e n t i a l s e r v i c e s . T h i s has s i n c e been expanded t o i n c l u d e a d u l t s . I n r e c e n t y e a r s , l o c a l C h a p t e r s o f t h e A s s o c i a t i o n have u n d e r t a k e n a v a r i e t y o f d i r e c t s e r v i c e s f o r c h i l d r e n and a d u l t s w i t h f i n a n c i a l s u p p o r t from t h e p r o v i n c i a l government; (d) t h e t h r u s t o f the " n o r m a l i z a t i o n movement" i n t h e e a r l y 70's, l e d t o a more m i l i t a n t p h i l o s o p h i c a l s t a n d p o i n t and g r e a t e r c o n c e r n f o r t h e r i g h t s d f r e t a r d e d a d u l t s . W i t h n o r m a l i z a t i o n i d e o l o g y as p h i l o s o p h i c a l base, BCAMR 22 broadened i t s g o a l s as f o l l o w s : (a) To a c h i e v e d e i n s t i t -u t i o n a l i z a t i o n f o r a l l i n s t i t u t i o n a l r e s i d e n t s ; (b) To r e t u r n them t o t h e community; (c) To advocate f o r t h e development o f community s e r v i c e s f o r m e n t a l l y r e t a r d e d p e r s o n s ; (d) To i n -f l u e n c e government p o l i c y towards t h e m e n t a l l y r e t a r d e d ; and (c) To educate t h e p u b l i c . I n g e n e r a l t e r m s , t h e aims and o b j e c t i v e s o f the p r o -v i n c i a l government and BCAMR a r e s i m i l a r w i t h r e s p e c t t o p h i l o s o p h i c a l base and d i r e c t i o n o f s e r v i c e s . B oth a c c e p t 22. Annual C o n f e r e n c e R e p o r t s , BCAMR 1973 t o 1980. - 38 -the p r i n c i p l e o f n o r m a l i z a t i o n i n p o l i c y development and b o t h are committed t o d e - i n s t i t u t i o n a l i z a t i o n , community i n t e g r a -t i o n o f m e n t a l l y r e t a r d e d p e r s o n s and t h e u t i l i z a t i o n o f community based s e r v i c e s . However, the government and BCAMR d i f f e r on t h e speed w i t h w h i c h t h e s e common g o a l s a re e f f e c t e d . There i s need, t h e r e f o r e t o examine t h e p r o c e s s and c o n t e n t o f what has so f a r been a c h i e v e d by way o f p l a c i n g r e t a r d e d a d u l t s i n t h e community under t h e p r e v i o u s and p r e s e n t p o l i c y d i r e c -t i o n s . I t s h o u l d a l s o be n o t e d t h a t p r e s e n t l y i n B r i t i s h C o l u m b i a , the v o l u n t e e r s e c t o r o r n o n - p r o f i t s o c i e t i e s can o p e r a t e and manage group homes or community r e s i d e n t i a l s e r v i c e s under c o n t r a c t w i t h a d m i n i s t r a t i v e Regions o f the M i n i s t r y o f Human 23 R e s ources. F u n d i n g f o r Group Homes i s p r o v i d e d by t h e government c a l c u l a t e d on p e r diem b a s i s , and n e g o t i a t e d a n n u a l l y from an approved budget. The v o l u n t e e r s e c t o r as w e l l as p r i v a t e i n d i v i d u a l s p r o v i d e r e s i d e n t i a l and o t h e r s e r v i c e s a t the l o c a l l e v e l . BCAMR does n ot p a r t i c i p a t e i n d i r e c t o p e r a t i o n o f t h e s e s e r v i c e s b u t i t s l o c a l c h a p t e r s do. The p a r t i c i p a t i o n o f l o c a l c h a p t e r s o f BCAMR i n d i r e c t s e r v i c e d e l i v e r y has c e r t a i n i m p l i c a t i o n s . F i r s t , t h e impact 23. Under t h e Community Care F a c i l i t i e s L i c e n c i n g A c t o f 1976, n o n - p r o f i t s o c i e t i e s may o p e r a t e Group Homes. The A c t a l s o p e r m i t s p r i v a t e i n d i v i d u a l s t o o p e r a t e p r o p r i e t a r y or f o r p r o f i t Commercial B o a r d i n g Homes which must be l i c e n c e d when t h e r e a re 3 o r more beds. - 39 -o f BCAMR as an advocate group i s l i m i t e d i n t h e a r e a o f d i r e c t d e l i v e r y o f s e r v i c e s . The tendency i s t o f o c u s on g e n e r a l i t i e s r a t h e r t h a n s p e c i f i c i n d i v i d u a l problems o f t h e i r c l i e n t s . T h i s s t u d y l o o k s a t some o f t h e s e i n d i v i d u a l problems. Second, t h e v o l u n t e e r s e c t o r s h a r e s i n any blame o r d e f i c i e n c y w h i c h may be l e v e l e d on d i r e c t s e r v i c e s i f community placement of r e t a r d e d p e r s o n s prove t o be a f a i l u r e i n communities. T h i r d , dependence on government's f i n a n c i a l s u p p o r t r a t h e r t h a n v o l u n t a r y s o u r c e s l i m i t s a b i l i t y t o expand programs o r t o s t r i c t l y e f f e c t t h e t e n e t s and r e q u i r e m e n t s o f the normal-i z a t i o n i d e o l o g y . 1.4.1 P u b l i c and V o l u n t a r y E f f o r t The f o r m a t i o n o f an A s s o c i a t i o n known as Woodlands P a r e n t s ' Group, and a S o c i e t y c a l l e d t h e Community L i v i n g S o c i e t y - CLS -add a new d i m e n s i o n w h i c h i n v o l v e s c o o p e r a t i o n o f the p u b l i c and t h e v o l u n t e e r s e c t o r i n a d d r e s s i n g the i s s u e o f s e r v i c e s f o r m e n t a l l y r e t a r d e d p e r s o n s . Woodlands P a r e n t s Group - WPG - i s made up by some p a r e n t s o f r e s i d e n t s a t t h e Woodlands i n s t i t u t i o n . I t s b a s i c aim i s t o improve and p o s s i b l y m o n i t o r l i v i n g c o n d i t i o n s a t Woodlands. S e v e r a l o f i t s members l a t e r were i n s t r u m e n t a l i n t h e form-a t i o n o f t h e CLS. However, b o t h a r e s e p a r a t e o r g a n i z a t i o n s w i t h o v e r l a p p i n g membership. A l s o , t h e i r c o l l e c t i v e aim i s t o d e v e l o p comprehensive community based system o f - 40 -24 s e r v i c e . I n a l e t t e r t o t h e M i n i s t e r o f Human R e s o u r c e s , d a t e d Feb. 24, 1977, t h e Woodlands P a r e n t s ' Group c a l l e d a t t e n t i o n t o t h e f a c t t h a t d e v e l o p m e n t a l p r o g r e s s cannot be r e a l i z e d i n the i n s t i t u t i o n a l s e t t i n g , and s t a t e d t h e i r i n t e n t i o n : t o see t o t h e development o f community based s e r v i c e s i t i s our f e e l i n g t h a t t h e p r e s e n t c l i m a t e i n B.C. i s r i p e f o r t h e development of such a l t e r n a t i v e t o t h e i n s t i t u t i o n . The same y e a r , t h e M i n i s t e r responded on b e h a l f of the p r o v i n c i a l government by l a u n c h i n g what he c a l l e d "a major e f f o r t t o d e i n s t i t u t i o n a l i z e s e r v i c e s f o r t h e m e n t a l l y h a n d i -capped." T h i s e f f o r t was code-named " P r o j e c t L I F E " o r L i v i n g I n d e p e n d e n t l y f o r E q u a l i t y (Vander Zalm, 1977). The e f f o r t would "enable r e s i d e n t s t o move away from l a r g e i n s t i t u t i o n s and i n i t i a t e a v a r i e t y o f Community S e r v i c e s . . . . t h a t w i l l a s s i s t such p e r s o n s t o l i v e as i n d e p e n d e n t l y as p o s s i b l e . " I n 1978, 25 the M i n i s t e r e s t a b l i s h e d t h e CLS: 24. The aims and o b j e c t i v e s o f t h e two o r g a n i z a t i o n s a r e d e t a i l e d i n two u n p u b l i s h e d m a t e r i a l s : (a) Development o f a Comprehensive Community Based System o f S e r v i c e -S p e c i a l P r e s e n t a t i o n t o t h e M i n i s t e r o f Human R e s o u r c e s , 1977, (b) A P r o p o s a l f o r an E x p e r i m e n t a l and Demonstra-t i o n Comprehensive S e r v i c e P r o j e c t f o r B r i t i s h Columbia. Community L i v i n g B o a r d , BCAMR 197 7. 25. Annual R e p o r t : M i n i s t r y o f Human R e s o u r c e s , P r o v i n c e o f B r i t i s h C o l u m b i a , 1978. - 41 -t o a s s i s t w i t h t h e o r d e r l y p l a n n i n g and community placement of d e v e l o p m e n t a l l y d i s a b l e d persons and t o encourage community s e r v i c e s t o s e r v e t h e s e p e r s o n s . CLS t h e r e f o r e i s a supplementary placement o r g a n i z a t i o n whose f u n c t i o n a l arm i s the Community L i v i n g B oard, CLB. The CLB e n t e r s i n t o c o n t r a c t s w i t h s e r v i c e p r o v i d e r s on b e h a l f o f r e t a r d e d a d u l t s from Woodlands. A t t h e end o f 1980, 48 m e n t a l l y r e t a r d e d a d u l t s have been d e - i n s t i t u t i o n a l i z e d and p l a c e d i n t h e community t h r o u g h t h e CLB (Goad, 1981). T h i s i s a f a r c r y from t h e 200 a d u l t s a t Woodlands the S o c i e t y e s t i m a t e d as ready f o r community l i v i n g i n 1977. As a r e s u l t , t h e r e has been some c o n c e r n e x p r e s s e d by CLS r e g a r d i n g t h e i n t e n t i o n o f the p r o v i n c i a l government i n f u r t h e r c a r r y i n g on w i t h d e - i n s t i t u t i o n a l i z a t i o n . Sometimes, t h e s e concerns have been e x p r e s s e d t h r o u g h t h e media. The budget f o r CLB a c t i v i t i e s i s t o t a l l y funded by t h e p r o v i n c i a l government. The CLB has argued t h a t i t s expenses i n t h e community w i l l be about h a l f t h e c o s t o f i n s t i t u t i o n a l c a r e p e r a d u l t a t Woodlands, and has r e c e n t l y c l a i m e d a b e t t e r than 90% s u c c e s s r a t e (Goad, 1981). There are f o u r o b s e r v a t i o n s t o be made r e g a r d i n g the CLS and WPG. The f i r s t i s t h a t t h e r e i s c o o p e r a t i o n w i t h the p u b l i c s e c t o r i n p r o v i d i n g community s e r v i c e s . I n t h i s r e g a r d , the government p r o v i d e s a l l the f u n d i n g t h a t i s r e q u i r e d and can c o n c e i v a b l y l i m i t f u n d i n g i f i t i s not s a t i s f i e d w i t h e i t h e r p o l i c y d i r e c t i o n o f e f f i c i e n c y o f o p e r a t i o n . The second o b s e r v a t i o n i s t h e c l a i m by CLS t h a t - 42 -i t i s cheaper f o r a r e t a r d e d a d u l t t o l i v e i n t h e community th a n i n t h e i n s t i t u t i o n . One may t h e r e f o r e want t o know how the c o s t o f community l i v i n g has a f f e c t e d t h e p h i l o s o p h y o f n o r m a l i z a t i o n . A l t h o u g h t h i s i s not an i s s u e i n t h i s s t u d y , n e v e r t h e l e s s , i t may have i m p o r t a n t i m p l i c a t i o n s f o r f u t u r e d i r e c t i o n . The t h i r d o b s e r v a t i o n i s an a s s e r t i o n t h a t i n -s t i t u t i o n a l i z e d a d u l t s a r e not b e i n g r e t u r n e d t o the com-munity a t a f a s t e r r a t e (Goad, 1981). One may a g a i n s p e c u l a t e whether t h i s i s a d e l i b e r a t e e f f o r t on t h e p a r t o f t h e govern-ment o r a r e s u l t o f i n a d e q u a t e community r e s o u r c e . T h i s s t u d y a l s o l o o k s a t the ty p e and adequacy o f community r e s o u r c e s t h a t have been a p p l i e d t o i n d i v i d u a l needs. The f o u r t h ob-s e r v a t i o n r e l a t e t o membership o f t h e CLS and t h e WPG. The m a j o r i t y o f t h e membership o f b o t h o r g a n i z a t i o n s a l s o h o l d membership t o l o c a l A s s o c i a t i o n s f o r the M e n t a l l y R e t a r d e d and c o n s e q u e n t l y t o BCAMR. T h e r e f o r e , t h e p h i l o s o p h i c a l b a s i s f o r p o l i c y i n a l l t h e s e o r g a n i z a t i o n s i s the same. 1.5 S e r v i c e s f o r R e t a r d e d A d u l t s There a r e two t y p e s o f s e r v i c e s f o r r e t a r d e d a d u l t s i n 2 6 B r i t i s h C o lumbia. These a r e (a) A d u l t Support S e r v i c e s and (b) A d u l t R e s i d e n t i a l Care programs o r S e r v i c e s . 26. I n v e n t o r y o f S e r v i c e s f o r Handicapped C h i l d r e n and A d u l t s . M i n i s t r y o f Human Resources 1980. - 43 -A d u l t s u p p o r t s e r v i c e s o r programs r e l a t e t o b a s i c income s u p p o r t under t h e Handicapped P e r s o n s Income A s s i s t a n c e P l a n , (H.P.I.A.), f o r p e r s o n s r e c e i v i n g handicapped b e n e f i t s . As has been noted e a r l i e r on, e l i g i b i l i t y f o r the G.A.I.N. A c t and c o n s e q u e n t l y f o r H.P.I.A. i s t h r o u g h m e d i c a l e x a m i n a t i o n . A p p l i c a n t s must be a t l e a s t 18 y e a r s o r under 65 y e a r s o f age, and have a monthly income l e s s t h a n t h e gu a r a n t e e d l e v e l , and a s s e t s n o t e x c e e d i n g $2,500 f o r a s i n g l e p e r s o n o r $5,000 f o r a p e r s o n w i t h dependents. As o f A p r i l 1979, t h e maximum monthly b e n e f i t , f o r a s i n g l e p e r s o n i s $387.19. Persons r e c e i v i n g handicapped b e n e f i t s a r e a l s o e l i g i b l e f o r f u l l m e d i c a l c o v e r a g e , b a s i c d e n t a l s e r v i c e s , eye g l a s s e s , pharma-c a r e , t r a n s p o r t a t i o n a l l o w a n c e up t o $20 p e r month, and an i n c e n t i v e a l l o w a n c e f o r employment o f up t o $50 f o r a s i n g l e p e r s o n o f $100 f o r a p e r s o n w i t h dependents. Community i n v o l v e m e n t programs e n a b l e s t h e r e c i p i e n t o f HPIA, who i s u n a b l e t o work b u t a b l e t o p a r t i c i p a t e i n t h e p r o v i s i o n o f community s e r v i c e s , t o r e c e i v e up t o $50 i n o r d e r t o encourage p a r t i c i p a t i o n . Achievement C e n t r e s o p e r a t e d by n o n - p r o f i t s o c i e t i e s may r e c e i v e s u b s i d i e s t o e n a b l e them t o c a r r y on w i t h programs d e s i g n e d t o h e l p p e o p l e improve t h e i r s o c i a l and work s k i l l s w h i c h w i l l enhance the q u a l i t y o f t h e i r l i v e s and i n c r e a s e t h e i r : . independence. A n o t h e r s u p p o r t s e r v i c e i s t h e Community L i v i n g Board CLB whic h has been r e f e r r e d t o i n s u b s e c t i o n 1.4. The CLB i s - 44 -d e s i g n e d t o p l a n the community placement o f p r e s e n t and former r e s i d e n t s o f Woodlands, t o encourage t h e use o f community s e r v i c e s f o r t h e s e i n d i v i d u a l s and t o s t i m u l a t e t h e d e v e l o p -27 ment o f a p p r o p r i a t e new r e s o u r c e s . R e s i d e n t a l s e r v i c e s a re p r o v i d e d by government, t h e v o l u n -t a r y s e c t o r and p r i v a t e i n d i v i d u a l s (Note 2 3 ) . The government a d m i n i s t e r s t h e t h r e e p u b l i c p r o v i n c i a l i n s t i t u t i o n s o f which Woodlands i s one (Note 1 2 ) . N o n - p r o f i t s o c i e t i e s and p r i v a t e i n d i v i d u a l s o p e r a t e a range o f community based r e s i d e n t i a l s e r v i c e s under p r o v i n c i a l l i c e n c i n g and c o n t r a c t w i t h the M i n i s t r y o f Human Res o u r c e s . Community r e s i d e n t i a l s e r v i c e s i n c l u d e : (a) F o s t e r and f a m i l y homes which a re p r i v a t e homes f o r one o r two persons,' (b) Group homes which p r o v i d e accom-modation f o r 3 t o 1 4 p e r s o n s . However, t h e M i n i s t r y recommends 6 t o 8 r e s i d e n t s i n a group home. A l t o g e t h e r , t h e r e a r e 3 5 group homes w i t h a r e s i d e n t i a l c a p a c i t y o f 3 4 3 f o r a d u l t s i n k 2 8 B r i t i s h Columbia^ (c) S h o r t s t a y H o s t e l s which may s e r v e as r e s p i t e c a r e r e s i d e n c e s o r may be o p e r a t e d y e a r round o r f o r a p e r i o d o f months^ (d) P r o p r i e t a r y B o a r d i n g Homes whi c h are commercial e n t e r p r i s e s w i t h 3 o r more beds; and (d) Inde-pendent L i v i n g Homes, g e n e r a l l y r e f e r r e d t o as "Apartment T r a i n i n g Homes" w h i c h a r e used t o p r e p a r e a d u l t s t o l i v e 2 7 . Annual R e p o r t s . M i n i s t r y o f Human Resources 1 9 7 8 and 1 9 7 9 . 2 8 . I n v e n t o r y of S e r v i c e s , note 2 6 . A l s o note 2 7 . - 45 -i n d e p e n d e n t l y . 1.5.1 S e r v i c e s Under L . I . F . E . Program Under t h e " L i v i n g I n d e p e n d e n t l y f o r E q u a l i t y " program -LI F E - the M i n i s t r y may a l l o c a t e funds t o p r o v i d e one-to-one s u p p o r t t o e n a b l e m e n t a l l y r e t a r d e d a d u l t s improve l e v e l o f independent f u n c t i o n i n g i n t h e community e s p e c i a l l y i n the a r e a s o f f i n a n c i a l management, use o f t r a n s p o r t a t i o n s e r v i c e s , use o f l e i s u r e t i m e , p e r s o n a l h y g i e n e , i n t e r p e r s o n a l r e l a t i o n -s h i p s and j o b s e a r c h s k i l l s . 1.6 The I s s u e The l a r g e r i s s u e i s whether m e n t a l l y r e t a r d e d a d u l t s who ar e now i n s t i t u t i o n a l i z e d s h o u l d c o n t i n u e t o be p l a c e d i n communities where t h e y are e x p e c t e d t o b e n e f i t from community s e r v i c e s w i t h o u t b e i n g s t i g m a t i z e d o r d e p r i v e d o f r i g h t s . T h i s , o f c o u r s e r e l a t e s t o the r e a d i n e s s o f t h e community t o a c c e p t them, t h e a v a i l a b i l i t y o f community r e s o u r c e s t o meet t h e i r i n d i v i d u a l needs, and t h e c o n d i t i o n s o f p o l i c y by which t h e y a r e i n t e g r a t e d i n the community. The s p e c i f i c i s s u e i s how w e l l has t h e p r o c e s s o f normal-i z a t i o n been a p p l i e d t o community s e r v i c e s w h i c h have been used t o address t h e needs o f d e - i n s t i t u t i o n a l i z e d r e t a r d e d a d u l t s . How adequate a r e t h e s e community s e r v i c e s i n meeting th e i n d i v i d u a l needs o f t h e s e a d u l t s ? Has t h e r e been an e f f e c t i v e change i n p o l i c y d i r e c t i o n from the m e d i c o - c u s t o d i a l system t o t h e s o c i a l s e r v i c e system? What a r e t h e i m p l i c a t i o n s - 46 -o f t h e p o l i c y o f n o r m a l i z a t i o n ? I n t h i s c h a p t e r , i t has been shown t h a t : (a) S o c i e t y has had g r e a t d i f f i c u l t y i n s o r t i n g out and i n d e a l i n g w i t h problems of r e s i d u a l d e v i a n c e a s s o c i a t e d w i t h m e n t a l r e t a r d a t i o n . T h e r e f o r e , i t has o s c i l l a t e d i t s r e a c t i o n a c c o r d i n g t o p r e v a i l i n g i d e o l o g y o r a t t i t u d e . C o n s e q u e n t l y , t h e r e i s c o n s t a n t s e a r c h f o r new p o l i c y d i r e c t i o n s amidst changing norms and c h a n g i n g s o c i a l development. (b) There has been a t l e a s t two p o l i c y d i r e c t i o n s i n B r i t i s h Columbia s i n c e 1969 r e g a r d i n g m e n t a l r e t a r d a t i o n . These are t h e medico-c u s t o d i a l system by w h i c h i s s u e s o f m e n t a l r e t a r d a t i o n had been m e d i c a l i z e d , and t h e s o c i a l system w h i c h i s c u r r e n t and adopts the c o n c e p t s o f n o r m a l i z a t i o n f o r s e r v i c e s i n t e n d e d f o r r e -t a r d e d p e r s o n s . The i m p l i c a t i o n b e i n g t h a t t h e s o c i a l systems p o l i c y p r o v i d e s b e t t e r q u a l i t y o f s e r v i c e t h a n th e c l i n i c a l s ystem, and t h a t n o r m a l i z a t i o n o f s e r v i c e s i s t h e p r o c e s s f o r a c h i e v i n g b e t t e r q u a l i t y of c a r e . (c) There i s ongoing debate and c o n t r o v e r s y r e g a r d i n g d e - i n s t i t u t i o n a l i z a t i o n and t h e i n -t e g r a t i o n o f r e t a r d e d p e r s o n s i n t o t h e community. W h i l s t b o t h the v o l u n t a r y s e c t o r and t h e p r o v i n c i a l government s u b s c r i b e t o the c oncept o f n o r m a l i z a t i o n , however, they d i f f e r as t o the speed a t w h i c h t h i s p r o c e s s i s c u r r e n t l y b e i n g e f f e c t e d . The government seem t o p r e f e r a more g r a d u a l p r o c e s s whereas p r e s s u r e groups would l i k e t o see immediate d e p o p u l a t i o n o f a l l i n s t i t u t i o n s (note 2 ) , t h u s b r i n g i n g i n t o c o n f l i c t the p o l i c y o f n o r m a l i z a t i o n and t h e p r o c e s s o f d e - i n s t i t u t i o n a l -i z a t i o n . - 47 -T h e r e f o r e , i n o r d e r t o a v o i d a s i t u a t i o n o f " S o c i a l 29 Trap" ( P i a t t , 1973) and t o d e t e r m i n e t h e e f f e c t i v e n e s s o f p o l i c y d i r e c t i o n s , i t i s n e c e s s a r y t o : (a) examine how t h e p o l i c y o f n o r m a l i z a t i o n has been a p p l i e d t o s e r v i c e s used t o address t h e needs o f d e - i n s t i t u t i o n a l i z e d a d u l t s who a r e a l r e a d y l i v i n g i n the community; (b) det e r m i n e t h e adequacy o f t h e s e s e r v i c e s i n m e e t i n g the i n d i v i d u a l needs o f t h e s e a d u l t s i n view o f the o b j e c t i v e t o n o r m a l i z e t h e i r l i v e s . Woodlands, t h e l a r g e s t and o l d e s t o f t h e t h r e e p r o v i n c i a l i n s t i t u t i o n s i n B r i t i s h Columbia has f e a t u r e d p r o m i n e n t l y i n the debate f o r d e - i n s t i t u t i o n a l i z a t i o n . Between 1969 and 1979 the p o p u l a t i o n o f Woodlands d e c l i n e d by 31%. 17% o f t h i s between 1969 and 1973 b e f o r e t h e i n t r o d u c t i o n o f the s o c i a l system o f s e r v i c e . 14% o f t h e d e c l i n e i s between 1975 and 1979 a f t e r a change i n p o l i c y has been e f f e c t e d . ^ 0 A l s o i n 197 4, f o l l o w i n g a change i n P o l i c y , t h e s i t u a t i o n was such t h a t i n s t i t u t i o n a l i z e d r e s i d e n t s were asked t o d i s c h a r g e t h e m s e l v e s , i f they w i s h , a t the age o f 19. C o n s e q u e n t l y , t h e r e has been, and c o n t i n u e s t o be, a number o f s e l f 29. P i a t t makes the p o i n t t h a t government and p l a n n e r s , l i k e f i s h i n f i s h t r a p s , p r o c e e d i n e x o r a b l y i n t o s i t u a t i o n s w h i c h become i n c r e a s i n g l y hazardous o r l e t h a l and so u n a b l e t o f r e e t h e m s e l v e s . 30. F i g u r e s have been c a l c u l a t e d from S t a t i s t i c a l R e p o r t s o f t h e M e n t a l H e a l t h Branch and A n n u a l R e p o r t s o f t h e M i n i s t r y o f Human Resources f o r the g i v e n y e a r s . - 48 -d i s c h a r g e d a d u l t s who a r e now r e c e i v i n g s e r v i c e s i n the community. T h e r e f o r e , i n o r d e r t o p l a n f o r f u t u r e s e r v i c e s , i t i s n e c e s s a r y t o examine how p r e v i o u s l y i n s t i t u t i o n a l i z e d a d u l t s , o f a l l c a t e g o r i e s , have been t r e a t e d i n the community under t h e c u r r e n t p o l i c y . 1.6.1 Statement o f t h e Problem The s t u d y l o o k s a t the f o l l o w i n g : (a) The p o l i c y o f n o r m a l i z a t i o n (independent v a r i a b l e ) and community s e r v i c e s (dependent v a r i a b l e ) . (b) Community S e r v i c e s (independent v a r i a b l e ) and the needs (dependent v a r i a b l e ) o f m e n t a l l y r e t a r d e d a d u l t s . (c) The r e l a t i o n s h i p s between dependent and independent v a r i a b l e s . (d) The i n f l u e n c e o f t h e f o l l o w i n g i n t e r v e n i n g v a r i a b l e s : age, s e x , l e v e l o f i n t e l l i g e n c e and l e v e l o f s o c i a l q u o t i e n t . 1.6.2 Purpose o f Study (a) To e x p l o r e t h e n a t u r e o f t h e n o r m a l i z a t i o n of s e r v i c e s f o r p r e v i o u s l y i n s t i t u t i o n a l i z e d a d u l t s from Woodlands p r o v i n c i a l i n s t i t u t i o n f o r t h e m e n t a l l y r e t a r d e d . (b) To examine t h e r e l a t i o n s h i p o f community based s e r v i c e s t o t h e needs of t h e s t u d y p o p u l a t i o n . - 49 -(c) To p r o v i d e d a t a t o a i d d e c i s i o n - m a k e r s i n p l a n n i n g com-munity-based s e r v i c e s f o r r e t a r d e d a d u l t s . (d) To a n a l y s e and t o d i s c u s s the development o f s o c i a l p o l i c y and t h e i m p l i c a t i o n s o f t h e p o l i c y o f n o r m a l i z a t i o n i n t h e a r e a o f m e n t a l r e t a r d a t i o n . 31 1.6.3 O p e r a t i o n a l D e f i n i t i o n s (a) P o l i c y : The p r i n c i p l e s and c o u r s e s of a c t i o n adopted and p u r s u e d by the government of B r i t i s h Columbia as w e l l as by v a r i o u s u n i t s w i t h i n B r i t i s h Columbia ( G i l , 1970) and i n c l u d e s a l l p o l i c i e s d i r e c t e d toward making change i n t h e s t r u c t u r e o f s o c i e t y ( B o u l d i n g , 1976) . S p e c i f i c a l l y , t h e p o l i c y o f n o r m a l i z a t i o n , as d e s c r i b e d i n C h apter 3 i s examined i n t h e l i g h t o f government's d i r e c t i o n s . (b) Community S e r v i c e : T h i s r e f e r s t o s e r v i c e s which are p r o v i d e d i n an a r e a where p e o p l e l i v e and work under normal c o n d i t i o n s . I n t h i s s t u d y , any measure used o r i s e x p e c t e d t o be used i n a d d r e s s i n g a need i s a s e r v i c e . (Chapter 3 ) . (c) Need: T h i s i s d e f i n e d as a n e c e s s i t y w h i c h has been 31. See C h a p t e r 3.0, C o n c e p t u a l and M e t h o d o l o g i c a l G u i d e l i n e s f o r more d e t a i l e d d e f i n i t i o n s . - 50 -i d e n t i f i e d f o r a m e n t a l l y r e t a r d e d a d u l t s (.19 - 40 y r s . of age) by a team o f c a r e g i v e r s a t Woodlands a t the t i me o f Community Placement C o n f e r e n c e . There are seven c a t e g o r i e s o f need: R e s i d e n t i a l , S o c i a l , P s y c h o l o g i c a l , E d u c a t i o n a l / T r a i n i n g , V o c a t i o n a l , R e c r e a t i o n a l and M e d i c a l . 1.6.4 Research Q u e s t i o n s I n o r d e r t o a d d r e s s th e problem and a c h i e v e the purposes o f t h e s t u d y , s e v e r a l r e s e a r c h q u e s t i o n s a r e i d e n t i f i e d : (a) A r e t h e r e d i f f e r e n c e s i n the n a t u r e o f s e r v i c e s b e f o r e and a f t e r the i n t r o d u c t i o n o f n o r m a l i z a t i o n p o l i c y ? (b) Do s e r v i c e s a d e q u a t e l y address the needs o f d e - i n s t i t -u t i o n a l i z e d r e t a r d e d a d u l t s ? (c) A r e e x i s t i n g s e r v i c e s c o n s i s t e n t w i t h the p o l i c y o f n o r m a l i z a t i o n as d e f i n e d by the p r o v i n c i a l government? (d) Are R e s i d e n t i a l S e r v i c e s used r e s t r i c t i v e , and a r e t h e y i n t e g r a t e d i n t o t h e community? (e) Are d e i n s t i t u t i o n a l i z e d a d u l t s s o c i a l l y and f u n c t i o n a l l y i n t e g r a t e d i n t o t h e i r l o c a l communities? (f) A r e any problems e x p e r i e n c e d w i t h n o r m a l i z a t i o n p o l i c y a s s o c i a t e d w i t h problems i n the Community o r problems w i t h p o l i c y i s s u e s ? - 51 -1.6.5 Hypotheses S t a t e d i n t h e n u l l form: (a) That t h e r e i s no d i f f e r e n c e i n s e r v i c e s p r o v i d e d f o r p r e v i o u s l y i n s t i t u t i o n a l i z e d m e n t a l l y r e t a r d e d a d u l t s b e f o r e and a f t e r t h e i n t r o d u c t i o n o f a p o l i c y o f n o r m a l i z a t i o n . (b) That p a s t and p r e s e n t s e r v i c e s do not a d e q u a t e l y address the needs o f r e t a r d e d a d u l t s l i v i n g i n t h e community. (c) That s e r v i c e s are n o t c o n s i s t e n t w i t h n o r m a l i z a t i o n . 1.7 B r i e f P l a n o f Study The Study uses r e s t r o s p e c t i v e i n f o r m a t i o n on p r e v i o u s l y i n s t i t u t i o n a l i z e d , m e n t a l l y r e t a r d e d a d u l t s , male and f e m a l e , who were, a t l e a s t 19 y e a r s , b u t not more th a n 40 y e a r s o f age a t the time o f placement i n t h e community from Woodlands 1 I n s t i t u t i o n a t New W e s t m i n s t e r B r i t i s h C olumbia. The c h a r a c -t e r i s t i c s o f the Study p o p u l a t i o n as w e l l as Study l i m i t s a r e d e t a i l e d i n C h a p t e r 4.0. The Study p o p u l a t i o n i s d i v i d e d i n t o two groups - t h e p r e -n o r m a l i z a t i o n Group A, 1969 t o 1973; and t h e n o r m a l i z a t i o n Group B, 1975 t o 1979. Both groups r e p r e s e n t r e t a r d e d a d u l t s who have been p l a c e d i n o r have s e l f - d i s c h a r g e d themselves t o a l t e r n a t i v e community l i v i n g arrangements b e f o r e o r a f t e r t h e a d o p t i o n o f the concept o f n o r m a l i z a t i o n by t h e p r o v i n c i a l M i n i s t r y of Human Re s o u r c e s . The groups a r e s i m i l a r i n the ( - 52 -sense t h a t t h e y a r e w i t h i n t h e same age g r o u p i n g and have been a d m i t t e d t o Woodlands from t h e G r e a t e r Vancouver a r e a o f B r i t i s h Columbia (Chapter 4*0). I n d i v i d u a l needs - S o c i a l , M e d i c a l , P s y c h o l o g i c a l , Educ-a t i o n a l , R e c r e a t i o n a l , R e s i d e n t i a l and V o c a t i o n a l - which have been d e t e r m i n e d a t time o f Community Placement, a re t r a c e d t o community s e r v i c e s used t o address them ( K e s s n e r , e t a l , 1973). These s e r v i c e s a r e the n s c o r e d u s i n g c r i t e r i a w h i c h has been de v e l o p e d f o r measuring n o r m a l i z a t i o n i n G r e a t e r Vancouver a r e a of B r i t i s h Columbia (Chapter 3.0 Appendix A) . The c r i t e r i a i s based on a method f o r measuring p r o c e s s and outcome i n whi c h i m p l i c i t and e x p l i c i t judgements are r e q u i r e d (Brook and A p p e l , 1973) . S e r v i c e s a re t h e n c a t e g o r i z e d and s c o r e d i n f i v e a r e a s : n a t u r e , t y p e , name, l o c a t i o n and i n t e g r a t i o n (Wolfensberger and Glenn,1975). F u r t h e r c a t e g o r i z a t i o n i s a c h i e v e d by d e t e r m i n i n g w h i c h s e r v i c e s have been (a) i d e n t i f i e d as needed and were a c t u a l l y r e c e i v e d , (b) i d e n t i f i e d as needed b u t were not r e c e i v e d and (c) have not been i d e n t i f i e d as needed b u t were r e c e i v e d . I n e s s e n c e , the s t u d y i s based on the premise t h a t the p o l i c y o f n o r m a l i z a t i o n l e a d s t o a b e t t e r q u a l i t y o f c a r e o r of s e r v i c e . I n o t h e r words, h i g h l e v e l s o f n o r m a l i z a t i o n l e a d s t o h i g h l e v e l s o f q u a l i t y of c a r e . The s t u d y i s t h e r e f o r e , a p r o c e s s s t u d y w h i c h assumes t h a t a measure o f p r o c e s s i s i n d i r e c t l y a measure o f q u a l i t y . T h e r e f o r e , t h e r e a r e no - 53 -outcome measures i n methodology. R e s u l t s a r e examined i n two s t a g e s . F i r s t , d a t a are s t a t i s t i c a l l y a n a l y s e d t o i n d i c a t e r e l a t i o n s h i p s as r e q u i r e d by t h e h y p o t h e s i s . Second, two frameworks f o r p o l i c y a n a l y s i s are used t o f u r t h e r examine and d i s c u s s a v a i l a b l e d a t a b e f o r e i n f e r e n c e s a r e made ( G i l ,1976, K e r r , 1976 ( a ) , 1976 ( b ) ) . The g e n e r a l i s s u e o f l a b e l l i n g and d e v i a n c e i s d i s c u s s e d a l o n g w i t h p o l i c y a n a l y s i s . 1.8 O r g a n i z a t i o n o f t h e T h e s i s The f i r s t C h a p t e r i n c l u d e s g e n e r a l , h i s t o r i c a l and c u r r e n t background t o t h e i s s u e , a s t a t e m e n t o f the problem, the p u r -pose o f the s t u d y , r e s e a r c h q u e s t i o n s and h y p o t h e s e s , and b r i e f p l a n o f s t u d y . C h a p t e r 2.0 c o n s i s t s o f a r e v i e w o f r e -l a t e d l i t e r a t u r e . I n C h a p t e r 3.0 C o n c e p t u a l framework as w e l l as d e s i g n o f s t u d y a r e d i s c u s s e d , and the c r i t e r i a f o r measur-i n g n o r m a l i z a t i o n i s d e v e l o p e d . Chapter 4.0 p r o v i d e s a des-c r i p t i o n o f the p r o c e d u r e s used i n c o n d u c t i n g t h e s t u d y and the methodology a p p l i e d . Chapter 5.0 p r e s e n t s the r e s u l t s and an a n a l y s i s o f d a t a as w e l l as i n t e g r a t i o n o f the frame-works f o r p o l i c y a n a l y s i s . The S i x t h and f i n a l Chapter sum-m a r i z e s t h e f i n d i n g s o f the s t u d y and s e t s f o r t h c o n c l u s i o n s and i m p l i c a t i o n s f o r f u r t h e r s t u d y . - 54 -CHAPTER 2.0 REVIEW OF LITERATURE The l i t e r a t u r e on community l i v i n g and n o r m a l i z a t i o n o f s e r v i c e s f o r m e n t a l l y r e t a r d e d a d u l t s i s b r o a d l y based, v a r i e d and o f t e n c o n t r a d i c t o r y . T h i s i s p a r t l y due t o d i f f e r e n t i n t e r -p r e t a t i o n s , c o n c e p t s , m e t h o d o l o g i e s and p r o f e s s i o n a l s t a n d p o i n t from w h i c h t h e problem i s viewed. However, t h e b u l k o f a v a i l -a b l e i n f o r m a t i o n on community l i v i n g f o r r e t a r d e d p e r s o n s r e -l a t e t o d e - i n s t i t u t i o n a l i z a t i o n , community r e s i d e n t i a l s e r v i c e s , and a t t i t u d e o f r e s i d e n t i a l c a r e - g i v e r s b u t l i t t l e i n f o r m a t i o n on i n d i v i d u a l needs. A l s o , a v a i l a b l e l i t e r a t u r e r e l a t e m o s t l y t o the American scene and q u i t e l i m i t e d on t h e Canadian e n v i r o n -ment. I n t h i s c h a p t e r , l i t e r a t u r e p e r t a i n i n g t o the i s s u e r a i s e d i n C h a pter 1.0 i s p r e s e n t e d w i t h r e s p e c t t o : concept and mean-i n g ; l a b e l l i n g and d e v i a n c e ; models o f c a r e ; s o c i a l p o l i c y ; i n s t i t u t i o n a l i z a t i o n , d e - i n s t i t u t i o n a l i z a t i o n and community c a r e ; n o r m a l i z a t i o n ; needs; and s e r v i c e s . The format used i s one w h i c h e n a b l e s some d i s c u s s i o n and/or a n a l y s i s t o e l u c i d a t e f i n d i n g s o r arguments. A t the end, t h e Chapter i s summarized t o p u l l t o g e t h e r s p e c i f i c a s p e c t s o f l i t e r a t u r e w h i c h a re most r e l e v a n t t o t h e t h e o r e t i c a l framework and s t u d y d e s i g n d i s -c u s s e d i n C h a p t e r 3.0. 2.1 Concept, and Meaning The c o n c e p t o f m e n t a l r e t a r d a t i o n i s vague, i n d e f i n i t e - 55 -and complex a l t h o u g h t h e r e i s g e n e r a l concensus about what i t s h o u l d c o v e r . I t seems t h a t p r o f e s s i o n a l s respond t o the q u e s t i o n "what i s me n t a l r e t a r d a t i o n ? " by d i s c u s s i n g what i s not ( S t e v e n s , 1964, S m i t h , 1971) and by d e s c r i b i n g causes ( S t e v e n s , 1964). C o n s e q u e n t l y , the many d i f f e r e n t c o n c e p t s , d e f i n i t i o n s and c l a s s i f i c a t i o n systems o f t e n t e n d t o f o c u s on the c o n s t r u c t s o f t h e p a r t i c u l a r p r o f e s s i o n r a t h e r t h a n on t h e r e t a r d e d i n d i v i d u a l . Thus, the s o c i o l o g i s t s s e t out t o s t u d y r e t a r d a t i o n as a s o c i a l p r oblem, t h e p s y c h o l o g i s t s as a psy-c h o l o g i c a l problem and t h e p h y s i c i a n s as a m e d i c a l problem. Maloney and Ward (1979) c o n s i d e r t h e problem o f t h e con-c e p t o f mental r e t a r d a t i o n as a p r a c t i c a l one which r e l a t e s t o a " d e v i a n t group," and w h i c h r a i s e s a number o f r e s p o n s e s . These r e s p o n s e s have s e r v e d a v a r i e t y o f l e g a l , economic, s o c i a l , a d m i n i s t r a t i v e and b u r e a u c r a t i c p u r p o s e s . F o r example, t h e r e i s a need t o d e v e l o p a c o n c r e t e s e t o f c r i t e r i a on w h i c h t o base c r i t i c a l d e c i s i o n s on i s s u e s such as competency t o s t a n d . t r i a l , c u l p a b i l i t y f o r c r i m i n a l a c t s , i n s t i t u t i o n a l -i z a t i o n , e l i g i b i l i t y r e q u i r e m e n t s f o r a d m i s s i o n t o s p e c i a l c l a s s e s , and the f o r m u l a t i o n o f l a w s . Maloney and Ward (1979) f u r t h e r argue t h a t e x p e d i e n c y l e d t o two a s p e c t s t o t h e co n c e p t o f me n t a l r e t a r d a t i o n . These a s p e c t s a r e t h e s o c i a l and the p s y c h o l o g i c a l . The s o c i a l a s p e c t tends t o s t r e s s t h e m a n i f e s t problem o f s o c i a l incompetence as t h e u l t i m a t e c r i t e r i o n , whereas t h e psycho-l o g i c a l a s p e c t r e g a r d s incompetence as l a t e n t . . - 56 -W o l f e n s b e r g e r (1972) t a k e s t h e view t h a t s o c i a l incom-petence o r incompetence i s " c u l t u r a l l y r e l a t i v e , " h i g h l y com-p l e x , v a l u e l a d e n , and v a r i a b l e . He argues t h a t d i f f e r e n t c u l t u r e s make d i f f e r e n t demands and have d i f f e r e n t e x p e c t a t i o n s and l e v e l s o f t o l e r a n c e . T h e r e f o r e , as a p r a c t i c a l problem, the e x t e n t o f m e n t a l r e t a r d a t i o n w i l l v a r y w i t h c u l t u r a l con-t e x t . As a r e s u l t , he a r g u e s , the c o n s i d e r a t i o n o f m e n t a l r e -t a r d a t i o n as a m e d i c a l d i s e a s e becomes more congrous s i n c e t h e i n d i v i d u a l must be matched w i t h h i s o r her environment. Hence, r e t a r d a t i o n c o u l d become a temporary r a t h e r t h a n a permanent c o n d i t i o n e s p e c i a l l y f o r t h e m i l d l y r e t a r d e d . The same i n -d i v i d u a l can be d e f i n e d as " m e n t a l l y r e t a r d e d " o r "normal" depending on t h e s o c i a l system o f wh i c h he o r she i s a p a r t . I t i s g e n e r a l l y agreed t h a t m e n t a l r e t a r d a t i o n i s r e l a t e d t o i n t e l l i g e n c e o r a t l e a s t t h e l a c k o f i t t o some v a r y i n g degree. As Robinson and Robinson (.1965) n o t e , a l l o f t h e c o n t r o v e r s y c o n c e r n i n g t h e n a t u r e o f i n t e l l i g e n c e has a d i r e c t impact on the f i e l d o f me n t a l r e t a r d a t i o n . Grossman (1977) d e f i n e s m e n t a l r e t a r d a t i o n as f o l l o w s : M e n t a l r e t a r d a t i o n r e f e r s t o s i g n i f i c a n t l y subaverage i n t e l l e c t u a l f u n c t i o n i n g e x i s t i n g c o n c u r r e n t l y w i t h d e f e c t s i n a d a p t i v e b e h a v i o u r and m a n i f e s t e d d u r i n g the d e v e l o p m e n t a l p e r i o d . The Grossman d e f i n i t i o n w h i c h i s a c c e p t e d by t h e World H e a l t h O r g a n i z a t i o n , (WHO), the American A s s o c i a t i o n on M e n t a l D e f i c i e n c y (AAMD) and t h e Canadian A s s o c i a t i o n f o r the M e n t a l l y R e t a r d e d (CAMR) has t h r e e r e q u i r e m e n t s . - 57 -The f i r s t r e q u i r e m e n t r e l a t i n g t o t h e p e r s o n ' s l e v e l o f g e n e r a l i n t e l l i g e n c e i s o p e r a t i o n a l l y d e f i n e d and measured by performance on an i n d i v i d u a l l y a d m i n i s t e r e d , s t a n d a r d i z e d t e s t o f i n t e l l i g e n c e . The i n t e l l i g e n c e q u o t i e n t (I.Q.) i n d e x de-r i v e d from t h e s e t e s t s s e r v e s t o q u a n t i f y t h e g e n e r a l l e v e l o f i n t e l l e c t u a l f u n c t i o n i n g and i s used as t h e p r a c t i c a l c r i t e r i o n . The work " s i g n i f i c a n t " i s i n c l u d e d i n the d e f i n i t i o n f o r t h e v e r y s p e c i f i c f a c t t h a t t h e I.Q. c u t o f f f o r m e n t a l r e t a r d a t i o n i s two o r more s t a n d a r d d e v i a t i o n s below th e mean o r average I.Q. o f 100. I n p r a c t i c e , and depending on t h e type o f i n -t e l l i g e n c e t e s t u s e d , t h i s means t h a t the upper c u t o f f p o i n t f o r m ental r e t a r d a t i o n i s an I.Q. o f 68 o r 70. T h e r e f o r e a l l p ersons w i t h I.Q.'s below t h i s c u t o f f p o i n t s a t i s f y the r e q u i r e -ment f o r a d i a g n o s i s o f mental r e t a r d a t i o n , namely, s i g n i f i c a n t subaverage i n t e l l e c t u a l f u n c t i o n i n g . The second r e q u i r e m e n t r e l a t i n g t o a d a p t i v e b e h a v i o u r r e p r e s e n t s a major h i s t o r i c s h i f t i n the d i a g n o s t i c p r o c e s s . I n the p a s t , I.Q. a l o n e was c o n s i d e r e d t h e s o l e and s u f f i c i e n t c r i t e r i o n f o r m e n t a l r e t a r d a t i o n . T h i s p r a c t i c e i s no l o n g e r a p p r o p r i a t e s i n c e t h e r e must now be a m a n i f e s t impairment i n a d a p t i v e b e h a v i o u r as w e l l . I f a p e r s o n has no d i f f i c u l t y a d a p t i n g t o h i s e n v i r o n m e n t , i t i s m e a n i n g l e s s t o c o n s i d e r him m e n t a l l y r e t a r d e d j u s t because o f a t e s t s c o r e . A d a p t i v e b e h a v i o u r i s t h e r e f o r e d e f i n e d as t h e degree t o w h i c h the i n d i v i d u a l meets t h e s t a n d a r d s o f p e r s o n a l independence and s o c i a l r e s p o n s i b i l i t y e x p e c t e d o f h i s age and c u l t u r a l group. S i n c e t h e s e s t a n d a r d s are r e l a t e d and c u l t u r a l l y v a r i a b l e , - 58 -t h i s c r i t e r i o n i s d i f f i c u l t t o s p e c i f y , and c o n s e q u e n t l y t o measure r e l i a b l y . Maloney and Ward (1979), argue t h a t s i n c e t h i s c r i t e r i a v a r y w i t h age l e v e l , t h a t t h e r e i s a g e n e r a l e x p e c t a t i o n f o r i n c r e a s i n g independence, s e l f m a stery, and c o n f o r m i t y t o s o c i e t a l demands and c o n v e n t i o n s as the p e r s o n p r o g r e s s e s from one d e v e l o p m e n t a l l e v e l t o t h e n e x t . The t h i r d r e q u i r e m e n t r e g a r d i n g m a n i f e s t a t i o n d u r i n g t h e d e v e l o p m e n t a l p e r i o d h e l p s t o d i s t i n g u i s h m e n t a l r e t a r d a t i o n from a v a r i e t y o f o t h e r d i s o r d e r s where low I.Q. and a d a p t i v e impairment a r e p r e s e n t . F o r example, a g r a d u a t e s t u d e n t o r u n i v e r s i t y p r o f e s s o r s u f f e r i n g from " b r a i n damage" secondary t o an a u t o m o b i l e a c c i d e n t may s c o r e w e l l below 70 on an I.Q. t e s t and m a n i f e s t a l l s o r t s o f a d a p t i v e i m p a i r m e n t s . L i k e -w i s e , p e o p l e w i t h a c u t e e m o t i o n a l d i s t u r b a n c e s are o f t e n q u i t e i m p a i r e d b e h a v i o u r a l l y and u n a b l e t o p e r f o r m w e l l on the I.Q. t e s t . The " d e v e l o p m e n t a l p e r i o d " r e f e r s t o t h e time d u r i n g w h i c h the growth o f i n t e l l i g e n c e i s presumed t o o c c u r . P r a c t i c a l l y , t h i s i s c o n s i d e r e d t o be from t h e time o f b i r t h u n t i l 16 o r 18 y e a r s o f age,''" a l t h o u g h t h e upper l i m i t i s a r b i t r a r y and d e b a t a b l e . 1. I n B r i t i s h C o l u m b i a , the l i m i t i s e i g h t e e n y e a r s . I n v e n t o r y o f S e r v i c e s , M i n i s t r y o f Human Re s o u r c e s , 1980. - 59 -2.1.1 I m p l i c a t i o n s o f Meaning There are t h r e e i m p l i c a t i o n s o f t h i s d e f i n i t i o n o f men t a l r e t a r d a t i o n . F i r s t , t h e d e f i n i t i o n says n o t h i n g about cause. A l t h o u g h s e v e r a l hundred a e t i o l o g i c a l c o n d i t i o n s a re known t o a s s o c i a t e w i t h m ental r e t a r d a t i o n , t h e d e f i n i t i o n i g n o r e s them i n f a v o u r o f a p u r e l y f u n c t i o n a l d e s c r i p t i o n . M e n t a l r e t a r d a t i o n i s t h e r e f o r e c o n s i d e r e d t o be a s t a t e o f b e h a v i o u r a l impairment o r s o c i a l incompetence t h a t has many c a u s e s . The second i m p l i c a t i o n i s t h a t t h e d e f i n i t i o n d e s c r i b e s the c u r r e n t f u n c t i o n i n g s t a t u s o f t h e i n d i v i d u a l and no p r o g -n o s t i c s t a t e m e n t s a re i m p l i e d . T h i s i s i n c o n t r a s t t o p a s t a t t i t u d e s and p r a c t i c e , w h e r e i n the n o t i o n s o f "permanence" and " i n c u r a b l e n e s s " were a s s o c i a t e d w i t h t h e d i a g n o s i s o f mental r e t a r d a t i o n , ( M e n o l a s c i n o , 1977). The c u r r e n t v iew g i v e s much g r e a t e r r e c o g n i t i o n t o the n o t i o n o f c h a n g e a b i l i t y . P r o g n o s i s i s now more r e l a t e d t o such f a c t o r s as a s s o c i a t e d m e d i c a l c o n d i t i o n s , m o t i v a t i o n , t r e a t m e n t , t r a i n i n g oppor-t u n i t i e s , and the environment. The t h i r d i m p l i c a t i o n r e l a t e s t o the con c e p t o f me n t a l r e t a r d a t i o n . The t r i p a t r i t e d e f i n i t i o n a s s e r t s t h a t I.Q. a l o n e i s no l o n g e r s u f f i c i e n t f o r a d e t e r m i n a t i o n o f me n t a l r e t a r d a t i o n . M e n t a l r e t a r d a t i o n has come t o be seen as a c u l t u r a l l y r e l a t i v e , s o c i a l l y d e f i n e d , s o c i a l - p s y c h o l o g i c a l problem, t h e r e b y a t t e s t i n g t o t h e awareness and r e c o g n i t i o n o f the cha n g i n g concept by s o c i e t y . - 60 -2.1.2 C l a s s i f i c a t i o n A s u r v e y o f l i t e r a t u r e r e v e a l s t h a t a wide v a r i e t y o f parameters have s e r v e d f o r d i f f e r e n t c l a s s i f i c a t i o n schemes, b o t h h i s t o r i c a l l y and i n c u r r e n t approaches. There a r e e s s e n t i a l l y s i x g e n e r a l parameters f o r c l a s s i f i c a t i o n : (a) s e v e r i t y o f symptoms, (b) a e t i o l o g y o f symptoms, (c) d e s c r i p t i o n o f syndromes, (d) a d a p t i v e b e h a v i o u r , (e) educ-a b i l i t y e x p e c t a t i o n s and (f) g r o u p i n g on a m a n i f e s t e d be-h a v i o u r b a s i s . Measured i n t e l l i g e n c e has been t h e most common c r i t e r i o n used i n r e l a t i o n t o t h e symptom s e v e r i t y parameter. C l a s s i f -i c a t i o n on t h i s b a s i s , n e c e s s i t a t e s g r o u p i n g o f i n t e l l i g e n c e q u o t i e n t (I.Q.) s c o r e s i n some f a s h i o n and i d e n t i f y i n g t h e s e groups w i t h a d e s i g n a t e d term o r l a b e l ( C h i n n , Drew and Logan, 1975). F o r example, W e c h s l e r (1958) used g r o u p i n g s and I.Q. s c o r e s as f o l l o w s : B o r d e r l i n e , 70-79; Moron, 50-69; I m b e c i l e , 30-49; I d i o t , 25 o r below. The AAMD and the CAMR c l a s s i f y as f o l l o w s : B o r d e r l i n e i n t e l l i g e n c e , 68 - 83 o r -1 s t a n d a r d d e v i a t i o n (S.D.) from t h e mean; m i l d l y r e t a r d e d , 52-67 o r -2.S.D.; m o d e r a t e l y r e t a r d e d , 36-51 o r -3 S.D.; s e v e r e l y r e t a r d e d , 20-35 o r -4 S.D.; and p r o f o u n d l y r e t a r d e d , 19 o r below o r -5 S.D. The M i n i s t r y o f Human Resources i n B r i t i s h 2 Columbia uses f o u r c a t e g o r i e s as f o l l o w s : M i l d r e t a r d a t i o n , 2. I n v e n t o r y o f S e r v i c e s , S e r v i c e s t o Handicapped C h i l d r e n and A d u l t s . M i n i s t r y o f Human Resources 1980. - 61 -3 52-67 on t h e S t a n d f o r d - B i n e t i n s t r u m e n t , o r 55-69 on the W e c h s l e r s c a l e (1958); Moderate r e t a r d a t i o n , 36-51, S t a n d f o r d -B i n e t ; Severe r e t a r d a t i o n , 20-35, S t a n d f o r d - B i n e t ; and P r o -found r e t a r d a t i o n , l e s s t h a n 20. The second g e n e r a l parameter f o r c l a s s i f i c a t i o n i s a e t i o l o g y o f symptoms. T h i s i n v o l v e s p r i m a r i l y , the b i o -c h e m i c a l a s p e c t s o f m e n t a l r e t a r d a t i o n . a n d i s most o f t e n viewed i n a m e d i c a l c o n t e x t , and may be termed m e d i c a l c l a s s -i f i c a t i o n . There are t e n c a t e g o r i e s w h i c h i n c l u d e i n f e c t i o n , trauma, m e t a b o l i c d i s o r d e r s , b r a i n d i s e a s e s , chromosomal ab-n o r m a l i t i e s , p s y c h i a t r i c d i s o r d e r s , e n v i r o n m e n t a l i n f l u e n c e and a s s o c i a t e d o t h e r c o n d i t i o n s . A p p r o x i m a t e l y 75 t o 85 per c e n t o f the t o t a l p o p u l a t i o n o f r e t a r d e d p e r s o n s f a l l w i t h i n t h e c a t e g o r y o f e n v i r o n m e n t a l i n f l u e n c e s ( C h i n n , Drew and Logan, 1975) . C l a s s i f i c a t i o n i s a l s o a c h i e v e d by d e s c r i b i n g syndromes and g r o u p i n g o f t h e symptoms. T h i s method i s m o s t l y used by workers i n t h e m e d i c a l f i e l d . Syndromes a r e u s u a l l y i d e n t i f i e d by o b s e r v a t i o n o f a p a t t e r n o f p h y s i c a l and/or b e h a v i o r a l c h a r a c t e r i s t i c s a l t h o u g h p h y s i c a l d e s c r i p t i o n s t e n d t o p r e -dominate ( C a r t e r , 1965, Grossman, 1977). A d a p t i v e b e h a v i o u r o r r e l a t e d c o n c e p t s have been used as 3. D e s c r i b e d i n Conley R; The Economics of M e n t a l R e t a r d a t i o n , B a l t i m o r e : John Hopkins P r e s s 1973. See a l s o Grossman, (1977) . - 62 -f u n c t i o n a l parameters o f c l a s s i f i c a t i o n ( S l o a n and B i r c h , ' 1955, Grossman, 1977). A d a p t i v e b e h a v i o u r as a c l a s s i f i c a t i o n p a r a -meter a t t e n d s s p e c i f i c a l l y t o human development. There a r e f o u r l e v e l s 1, 2, 3 and 4 wh i c h r e p r e s e n t m i l d , moderate, s e v e r e and p r o f o u n d m e n t a l r e t a r d a t i o n r e s p e c t i v e l y . Each l e v e l d e s c r i b e s a d a p t i v e and s o c i a l b e h a v i o u r s a t the p r e -s c h o o l age, s c h o o l age and a d u l t s t a g e s o f l i f e . E d u c a b i l i t y e x p e c t a t i o n i s viewed as a parameter o f c l a s s i f i c a t i o n ( S c h e e r e n b e r g e r , 1964). The e d u c a t i o n a l c l a s s i f i c a t i o n approach i s based on a statement o r p r e d i c t i o n o f e x p e c t e d achievement. There a r e t h r e e c a t e g o r i e s - educ-a b l e , t r a i n a b l e , and c u s t o d i a l - b u t some p r o f e s s i o n a l s have i n c l u d e d a f o u r t h c a t e g o r y o f d u l l - n o r m a l w h i c h ranges f i r s t above t h e edu c a b l e i n terms o f measured I.Q. (Chinn, Drew and Logan, 1975). The s i x t h parameter o f c l a s s i f i c a t i o n i s based on be-h a v i o r a l m a n i f e s t a t i o n s . T h i s approach i s p o p u l a r i n the areas o f p s y c h o l o g y o f l e a r n i n g and e d u c a t i o n . I t i s based on b e h a v i o r a l o b s e r v a t i o n o f t a s k p e r f o r m a n c e , and d i f f e r s c o n c e p t u a l l y from t h e p r e v i o u s l y d i s c u s s e d c l a s s i f i c a t i o n schemes. The framework i s not concerned w i t h g r o u p i n g b u t i s based on what s k i l l s a g i v e n i n d i v i d u a l has o r does n ot have o r t o what degree he can p e r f o r m a t a s k . The f o c u s i s on the i n d i v i d u a l and h i s s k i l l l e v e l r a t h e r t h a n the i n d i v i d u a l i n terms o f h i s c a t e g o r y ( C h i n n , Drew and Logan, 1975) . - 63 -2.2 L a b e l i n g and Deviance i n M e n t a l R e t a r d a t i o n Much o f t h e l i t e r a t u r e o r d i s c u s s i o n o f m e n t a l r e t a r d -a t i o n l a b e l i n g r e l a t e s t o the attachment o f a d e v i a n t t a g o r s t a t u s t o an i n d i v i d u a l whose b e h a v i o u r does not appear normal t o t h e i d e n t i f i e r o f t h e problem ( W o l f e n s b e r g e r , 1972, R o w i t z , 1974, R o w i t z , 1981). L a b e l i n g has been d e s c r i b e d as a p r o c e s s which o c c u r s w i t h i n t h e l a r g e r p e r s p e c t i v e o f a community s o c i a l system ( E r i k s o n , 1962, G l a z e r , 1971, Sc h u r , 1979); and d e v i a n t be-h a v i o u r as " b e h a v i o u r t h a t p e o p l e so l a b e l " ( B ecker, 1963). As the l a b e l " d e v i a n c e " i s c o n f e r r e d upon the a c t s o r a t t r i b -u t e s of an i n d i v i d u a l by t h e au d i e n c e s v i e w i n g t h e a c t s , de-v i a n c e becomes a s o c i o l o g i c a l problem i n o r i g i n . I f t h e l a b e l " d e v i a n t " i s s u c c e s s f u l l y a p p l i e d , t h e s e i n d i v i d u a l s become d e v i a n t because o f the attachment of t h e l a b e l . The s o c i o -l o g i c a l assumption i s t h a t the i n d i v i d u a l s w i l l u s u a l l y a l s o a c c e p t t h e l a b e l , " d e v i a n t " ( B e c k e r , 1963, Sc h u r , 1971, R o w i t z , 1981) . The " l a b e l i n g p e r s p e c t i v e " as b r i e f l y d e s c r i b e d above has r e c e n t l y come under i n c r e a s i n g c o n t r o v e r s y because o f i t s v a l i d i t y and l i m i t s (Schur, 1971, Hawkins and Tiedman, 197 5, Gove, ( e d ) , 1975, Sucha r , 1978, Sc h u r , 1979). T h i s has im-p o r t a n t i m p l i c a t i o n s f o r m e n t a l l y r e t a r d e d p e r s o n s . L a b e l i n g seems t o r e f e r t o one t h i n g o n l y - t h e a l l e g e d u n f a v o u r a b l e consequences produced by d i r e c t n e g a t i v e l a b e l i n g o f s p e c i f i c i n d i v i d u a l s . C r i t i c s , however, emphasize t h a t the " d e v i a n t i z i n g - 64 -p r o c e s s " (Schur, 1979) more b r o a d l y p o i n t s t o t h e f a c t t h a t a t e v e r y l e v e l o f s o c i a l l i f e - i n i n t e r p e r s o n a l i n t e r a c t i o n , i n t h e p r o c e s s i n g o f i n d i v i d u a l s by d e s i g n a t e d " s o c i a l c o n t r o l " o r g a n i z a t i o n s , and i n t h e g e n e r a t i o n o f b r o a d d e v i a n c e con-c e p t u a l i z a t i o n s and c l a s s i f i c a t i o n s a t t h e s o c i e t a l l e v e l -d e v i a n c e i s always a s o c i a l c o n s t r u c t i o n b r o u g h t about t h r o u g h a c h a r a c t e r i s t i c p r o c e s s o f s o c i a l d e f i n i t i o n and r e a c t i o n (Suchar, 1978, Ryan and Thomas, 1980, S c h u r , 1980). There-f o r e , t h e deployment o f r e s o u r c e s f o r s o c i a l c o n t r o l h e l p s t o d e t e r m i n e d e v i a n c e outcomes ( E r i k s o n , 1966) and a g i v e n s o c i e t y i s then l i k e l y t o have th e k i n d s of d e v i a n c e i t f e a r s and perhaps even t h e amount o f d e v i a n c e i t seeks out (Schur, 1980) . The above d i s c u s s i o n p a r t l y e x p l a i n s why t h e p e r c e p t i o n and l a b e l i n g o f m e n t a l l y r e t a r d e d persons v a r y from one s o c i e t y o r c u l t u r e t o a n o t h e r ( W o l f e n s b e r g e r , 197 2 ) . The " i n t e r a c t i o n i s t c oncept" (Rubington and Weinberg, 1978; Goode, 1978) does n o t a d e q u a t e l y e x p l a i n the p l i g h t o f r e t a r d e d p e r s o n s . T h e r e f o r e , t h e r e i s a n o t h e r d i m e n s i o n - t h a t o f s o c i a l c o n t r o l mechanisms such as p r o f e s s i o n a l s and a g e n c i e s . M a c M i l l a n (1977) has argued t h a t t r a d i t i o n a l s o c i o -l o g i c a l p e r s p e c t i v e on l a b e l i n g i s o v e r s i m p l i f i e d . He t h e n l i s t s a number o f f a c t o r s w h i c h may i n f l u e n c e t h e l a b e l i n g o f an i n d i v i d u a l as m e n t a l l y r e t a r d e d and a f f e c t the impact o f t h e l a b e l on t h e i n d i v i d u a l . These a r e : (a) the i n -d i v i d u a l ' s p r e - l a b e l i n g e x p e r i e n c e , (b) t h e e f f e c t o f more - 65 -than one s t i g m a t i c l a b e l on the i n d i v i d u a l , (c) the e f f e c t of i n f o r m a l l a b e l i n g by f r i e n d s and neighbours/ (;d) the psycho-l o g i c a l impact on the i n d i v i d u a l , (e) the r e a c t i o n of the f a m i l y t o the mental r e t a r d a t i o n l a b e l and (f) the a c t u a l l a b e l used i n c o n t r a s t t o the s e v e r a l p o s s i b l e names f o r the same s e t of problems. S c h e f f (1966, 1975) argues t h a t the medical model, s p e c i f i c a l l y , procedures i n the d i a g n o s i s of mental i l l n e s s , i s o r i e n t e d towards the i n n e r s t a t e of the i n d i v i d u a l . T h e r e f o r e , the l a b e l i n g approach does not con-f l i c t w i t h an argument t h a t m e d i c a l i z a t i o n of s o c i a l problem i s o c c u r r i n g (see Chapter 1.0 p. 27). Rowitz (1981) reviewed S c h e f f ' s L a b e l i n g Theory of Mental i l l n e s s i n r e l a t i o n to mental r e t a r d a t i o n , and f i n d s seven out of a n i n e - i t e m l a b e l i n g theory of deviance a l s o a p p l i c a b l e t o mental r e t a r d a t i o n . However, he f i n d s t h a t the r e a l i t y of l a b e l i n g may never be understood by some r e t a r d e d persons, but agrees w i t h Mercer (1973) t h a t d e s p i t e p u b l i c l a b e l i n g i n s c h o o l s , many r e t a r d e d c h i l d r e n do not c a r r y t h e i r mental r e t a r d a t i o n l a b e l i n t o t h e i r home communities from sc h o o l environment. Moreover, when the e d u c a t i o n a l experience i s over, the i n d i v i d u a l may l o s e the l a b e l completely (Hobbs, 19 75, a, b . ) , although the d e n i a l of the l a b e l i s more d i f f i c u l t f o r more severe forms of r e t a r d a t i o n . Faber (1968) argues there i s a d i s t i n c t i o n between deviance and competency. A d e v i a n t i s an i n d i v i d u a l who v o l u n t a r i l y commits an a c t or engages i n behaviour which - 66 -may l e a d t o o f f i c i a l l a b e l i n g as a d e v i a n t . Other i n d i v i d u a l s may i n v o l u n t a r i l y commit a c t s o r engage i n b e h a v i o u r w h i c h may l e a d t o o f f i c i a l l a b e l i n g because of an i n a b i l i t y t o engage i n s o c i a l l y a c c e p t a b l e b e h a v i o u r . Faber f u r t h e r argues t h a t m e n t a l l y r e t a r d e d i n d i v i d u a l s f a l l i n t o t h i s l a t t e r group. However, t h i s d i s t i n c t i o n may be q u i t e s i m p l i s t i c i n t h a t i s s u e s o f competency may i n v o l v e o r g a n i c d e f i c i t s on the one hand o r s o c i a l d y s f u n c t i o n by m i d d l e c l a s s s t a n d a r d s on the o t h e r . F aber's argument may be t r u e f o r t h e s e v e r e l y r e t a r d e d b u t c o n t e n t i o u s f o r t h e m i l d l y r e t a r d e d . S h e f f (1966) a l s o h y p o t h e s i z e s t h a t l a b e l i n g i s the s i n g l e most i m p o r t a n t cause of d e v i a n t c a r e e r s . T h i s may not be a p p l i c a b l e t o t h e g e n e r a l p o p u l a t i o n o f t h e m e n t a l l y r e t a r d e d . F o r t h e i n d i v i d u a l s who a r e l a b e l e d m i l d l y m e n t a l l y r e t a r d e d , l a b e l i n g may o r may n o t a f f e c t them s o c i a l l y o r p s y c h o l o g i c a l l y (Mercer, 1973, K r a s n e r , 1977). T h i s r e a c t i o n i s o f t e n dependent on such f a c t o r s as s o c i o - e c o n o m i c s t a t u s , r a c e , and e t h n i c background. I f m e n t a l r e t a r d a t i o n l a b e l does not c a r r y o v e r from s c h o o l i n t o community r e l a t i o n s h i p s , i t becomes d i f f i c u l t t o t a l k about a d e v i a n t c a r e e r ( R o w i t z , 1974 b ) . I n t h i s s t u d y , t h e p o s i t i o n i s t a k e n t h a t the c a r r y - o v e r o f d e v i a n t l a b e l s from I n s t i t u t i o n t o t h e community l e a d s t o d e v i a n t type community s e r v i c e s . 2.2.1 S o c i e t a l R e a c t i o n The p o i n t t h a t s o c i e t a l r e a c t i o n v a r i e s from s o c i e t y t o s o c i e t y has been made e a r l i e r . However, i t appears t h a t a - 67 -s h i f t has o c c u r r e d from a c o n s i d e r a t i o n o f t h e causes o f m e n t a l r e t a r d a t i o n t o a c o n c e r n w i t h how m e n t a l l y r e t a r d e d i n d i v i d -u a l s a re c o n t r o l l e d ( R o w i t z , 1974 a) o r t h e i r problems p o l -i t i c i z e d (Schur, 1980, Ryan and Thomas, 1980). A g e n c i e s t h a t t r e a t s p e c i a l p o p u l a t i o n s a r e found t o be o r g a n i z e d i n such a way t h a t t h e d e t e r m i n a t i o n o f a p p r o p r i a t e cases f o r the agen-c i e s i s o f t e n made q u i t e i n d e p e n d e n t l y of t h e a c t s , c h a r a c t e r -i s t i c s o r q u a l i t i e s o f pe r s o n s coming t o t h e s e a g e n c i e s f o r s e r v i c e ( R o w i t z , 1974 a ) . Row i t z a l s o found t h a t the i d e a l type o f agency case i s o f t e n q u i t e b i a s e d d e m o g r a p h i c a l l y and dependent on such v a r i a b l e s i s : \ t h e p r o f e s s i o n a l ' s c o n c e p t i o n o f t h o s e who are s i c k and need h e l p ; the s p e c i f i c demographic c h a r a c t e r i s t i c s o f p o t e n t i a l s e r v i c e u s e r s t h a t any agency c o n s i d e r s t o be i t s c l i e n t e l e ; and the p a t t e r n o f i n t e r a g e n c y r e f e r r a l s t h a t produces new c l i e n t s . A l s o , t h e development and e x p a n s i o n o f many a l t e r n a t i v e t y p e s o f com-munity s e r v i c e s has been shown t o a f f e c t the demography o f s e r v i c e use and thus t h e l a b e l i n g o f i n d i v i d u a l s by v a r i o u s t y p e s o f a g e n c i e s ( R o w i t z , 0 1 Conner and B o r o s k i n , 1975). S p i t z e r (1975) o b s e r v e s t h a t t h e c o n t r o l o f d e v i a n c e i s o f t e n a c h i e v e d t h r o u g h c o n t a i n m e n t - g e o g r a p h i c a l , s o c i o -p s y c h o l o g i c a l o r m o r a l . Goffman (1961) n o t e s economic and i n t e r p e r s o n a l containment o f the asylums f o r the m e n t a l l y i l l . I n g e n e r a l each s o c i e t y seems t o be a s k i n g q u e s t i o n s such as: What f u n c t i o n s do t h e d e v i a n t s s e r v e ? What a r e t h e s o c i a l and perhaps m o r a l consequences f o r i n d i v i d u a l s b e i n g t r e a t e d as " d e v i a n t s ? " What power base do th e y have? These concerns - 68 -t h e r e f o r e l e a d t o t h e " p o l i t i c i z a t i o n " o f d e v i a n c e and power s t r u g g l e between t h o s e who are i n a p o s i t i o n t o g a i n from t h e p e r p e t u a t i o n o f a r o l e and t h o s e who want th e r o l e a b o l i s h e d (Schur, 1980, Ryan and Thomas, 1980). V a r i o u s p r o f e s s i o n a l groups i n the f i e l d o f m e n t a l r e t a r d a t i o n have v a r i o u s l y been p e r c e i v e d as i n f l u e n c i n g the degree o f l a b e l i n g and t h e r e f o r e d e v i a n c e t h a t o c c u r s a t any g i v e n time (Mercer, 1973, Ryan and Thomas, 1980, S c h u r , 1980). 2.2.2 Models o f Care Based p r i m a r i l y on M e r c e r ' s work (1965, 1973), two con-t r a s t i n g models on m e n t a l r e t a r d a t i o n have been d e l i n e a t e d . These are t h e c l i n i c a l and the s o c i a l systems models. Mercer (1973) n o t e s t h a t t h e c l i n i c a l p e r s p e c t i v e c l a s s -i f i e s m e n t a l r e t a r d a t i o n as a h a n d i c a p p i n g c o n d i t i o n which e x i s t s i n t h e i n d i v i d u a l and can be d i a g n o s e d by c l i n i c a l l y t r a i n e d p r o f e s s i o n a l s u s i n g p r o p e r s t a n d a r d i z e d assessment t e c h n i q u e s . T h i s model f o c u s e s on the i n d i v i d u a l i n terms o f " d e f e c t " and r e f l e c t s the e a r l y r o o t of mental r e t a r d a t i o n i n m e d i c i n e . The i n d i v i d u a l i s c o n s i d e r e d t o have an o r g a n i c d e f e c t , and any change o r c u r e i s dependent on changing t h e f a u l t y mechanism r e s p o n s i b l e f o r t h e i n a d e q u a t e o r r e t a r d e d b e h a v i o u r . W h i l e t h i s d e f e c t i s t y p i c a l l y c o n s i d e r e d t o be of g e n e t i c - b u t n o t n e c e s s a r i l y h e r e d i t a r y - o r i g i n , i t c o u l d be non g e n e t i c , t h a t i s ^ the r e s u l t o f i n f e c t i o n o r d e p r i v a t i o n . M ercer t h e r e f o r e c o n c l u d e d t h a t t h e c l i n i c a l model o f c a r e i s t h e frame o f r e f e r e n c e commonly adopted by - 69 -p e r s o n s i n the h e l p i n g p r o f e s s i o n s , such as i n the f i e l d o f m e d i c i n e , s o c i a l work and e d u c a t i o n . I n q u e s t f o r an answer t o the q u e s t i o n "who i s normal?" M e r c e r (1973) obse r v e d two c o n t r a s t i n g d e f i n i t i o n s w i t h i n t h e c l i n i c a l model. These a r e the " p a t h o l o g i c a l model" c o n t r i b u t e d by m e d i c i n e and t h e ' f e t a t i s t i c a l model" advanced by p s y c h o l o g y and m e d i c i n e . The p a t h o l o g i c a l model d e f i n e s d i s e a s e s by t h e i r b i o l o g i c a l symptoms. I n t h i s model, normal e q u a l s t h e absence o f patho-l o g i c a l symptoms and abnormal e q u a l s the p r e s e n c e o f patho-l o g i c a l symptoms. B i o l o g i c a l m a n i f e s t a t i o n i s e v a l u a t e d a g a i n s t a u n i v e r s a l s t a n d a r d . I n d u c t i v e l o g i c becomes l e s s c r u c i a l t han i n t h e s t a t i s t i c a l model, t h e r e f o r e f i n d i n g s which are g e n e r a t e d w i t h i n the p a t h o l o g i c a l model f r e q u e n t l y t r a n s c e n d s o c i e t a l b o u n d a r i e s . Thus; th e d i s e a s e model can be subsumed t o be a u n i v e r s a l model w h i c h i s based on a b i p o l a r c o n s t r u c t -normal and abnormal, o r cause and e f f e c t . The s t a t i s t i c a l model d e f i n e s a b n o r m a l i t y a c c o r d i n g t o the e x t e n t t o w h i c h an i n d i v i d u a l v a r i e s from t h e average o f t h e p o p u l a t i o n on a p a r t i c u l a r t r a i t . I n t e l l i g e n c e q u o t i e n t s (I.Q.) a r e r e p o r t e d i n s t a n d a r d d e v i a t i o n u n i t s w h i c h a r e the major c r i t e r i a f o r d e t e r m i n i n g l e v e l s o f mental r e t a r d a t i o n . F u r t h e r c l a s s i f i c a t i o n among the abnormal i s a c h i e v e d a c c o r d -i n g t o how many s t a n d a r d d e v i a t i o n s an i n d i v i d u a l i s below the mean. The g r e a t e r t h e d e v i a t i o n , the more s e v e r e t h e a b n o r m a l i t y . - 70 -Mercer (1973) c o n c l u d e s t h a t the c l i n i c a l d e f i n i t i o n o f men t a l r e t a r d a t i o n i s t h e r e f o r e based on a d u a l s t a n d a r d of normal - a p a t h o l o g i c a l m a n i f e s t a t i o n and a b e h a v i o r a l mani-f e s t a t i o n . That i s , low I.Q. i s e q u a l t o bad i n a g i v e n s o c i e t y ' s s o c i a l e v a l u a t i o n ; bad i s e q u a l t o p a t h o l o g y i n t h e p a t h o l o g i c a l model; t h e r e f o r e low I.Q. i s e q u a l t o p a t h o l o g y . Hence, I.Q., whi c h i s not a b i o l o g i c a l m a n i f e s t a t i o n b u t a b e h a v i o r a l s c o r e becomes c o n c e p t u a l l y t r a n s p o s e d i n t o a pa t h o -l o g i c a l s i g n w h i c h c a r r i e s a l l t h e i m p l i c a t i o n s o f t h e pa t h o -l o g i c a l model. Mercer's i n f e r e n c e s have been c r i t i c i z e d by Gordon (1975) as f a i l i n g t o c o n s i d e r "the g r o s s l y o r g a n i c c o m p l i c a t i o n s w h i c h accompany such c a s e s " and c h a r a c t e r i z e s the s t a t i s t i c a l model as " o v e r s i m p l i f i c a t i o n . " However, Gordon notes t h a t i t has become q u i t e common t o d i s c u s s I.Q. norms i n p a t h o l o g i c a l terms. Mercer (1973) d e s c r i b e s t h e s o c i a l systems model as c l a s s i f y i n g m e n t a l r e t a r d a t i o n as an a c q u i r e d s o c i a l s t a t u s , and i s d e r i v e d from s o c i o l o g y r a t h e r t h a n m e d i c i n e . Some-ti m e s c a l l e d t h e " S o c i a l d e v i a n c e model," i t d e f i n e s ab-n o r m a l i t y as b e h a v i o u r t h a t v i o l a t e s s o c i a l systems norms (see s e c t i o n 2.2 and s u b s e c t i o n 2.2.1). T h i s has l e d t o the c o n s i d e r a t i o n o f m e n t a l r e t a r d a t i o n as a c u l t u r a l phenomenon ( W o l f e n s b e r g e r , 1972) o r as a problem o f t h e s o c i e t y ( D e x t e r , 1958). D e n t l e r and E r i k s o n s u g g e s t t h a t the m e n t a l l y r e t a r d e d may h e l p m a i n t a i n s o c i a l group and c l a s s s t r u c t u r e s by h e l p i n g - 71 -d e f i n e t h e l i m i t s , s t a n d a r d s , s a n c t i o n s and group b o u n d a r i e s . On the o t h e r hand, Faber (1968) c o n s i d e r s the m e n t a l l y r e -t a r d e d as a s u r p l u s p o p u l a t i o n w h i c h p l a y s no p a r t i n t h e o r g a n i z a t i o n o f the s o c i e t y , and t h a t s o c i e t y c o u l d f u n c t i o n w i t h o u t t h i s s u r p l u s p o p u l a t i o n . However, they c o n t r i b u t e t o the maintenance o f s o c i a l s t r u c t u r e t h r o u g h t h e c r e a t i o n o f a need f o r i n s t i t u t i o n s f o r t h e i r t r e a t m e n t and c a r e . Mercer (1977) atte m p t s t o s o r t out the v a r i o u s p a r t s o f the s o c i a l systems model by i d e n t i f i c a t i o n o f i t s c h a r a c t e r -i s t i c s as f o l l o w s : (a) i t i s a m u l t i d i m e n s i o n a l model; (b) t h e r e a r e norms f o r each r o l e i n each s o c i a l system; (c) i t i s an e v a l u a t i v e model - t h e v a l u e s o f the most power-f u l groups a r e e n f o r c e d ; (d) d e f i n i t i o n o f b e h a v i o u r a re b o t h r o l e bound and system bound; (e) i t i s n e c e s s a r y t o s p e c i f y b o t h t h e r o l e and t h e system w i t h i n w h i c h t h e assessment i s b e i n g made; (f) i t i s b o t h a d e f e c i t model and an a s s e t model because t h e poor p e r f o r m e r s and the o u t s t a n d i n g p e r f o r m e r s i n v a r i o u s s o c i a l r o l e s can be i d e n t i f i e d . M e rcer (1973) con-c l u d e s t h a t "mental r e t a r d a t e " i s "an a c h i e v e d s o c i a l s t a t u s and m e n t a l r e t a r d a t i o n i s t h e r o l e a s s o c i a t e d w i t h t h a t s t a t u s i t does n ot d e s c r i b e i n d i v i d u a l p a t h o l o g y , b u t r a t h e r r e f e r s t o t h e l a b e l a p p l i e d t o a p e r s o n because he o c c u p i e s t h e p o s i t i o n o f mental r e t a r d a t e i n some s o c i a l system." An i m p l i c a t i o n o f the s o c i a l system model i s t h a t s i n c e an i n d i v i d u a l p a r t i c i p a t e s i n numerous s o c i a l systems s i m u l -t a n e o u s l y , and moves i n and o u t o f s o c i a l systems over t i m e , - 72 -he may a c h i e v e th e s t a t u s o f "mental r e t a r d a t e " a t one t ime and drop i t a t a l a t e r t i m e . 2.2.3 Models o f S o c i e t y M e rcer (1977) d e s c r i b e s two models o f S o c i e t y w h i c h r e l a t e t o the s t a t u s o f a group o r c u l t u r e i n a g i v e n s o c i e t y . These are t h e C o n f o r m i t y and the P l u r a l i s t i c models of s o c i e t y . The C o n f o r m i t y model v i s u a l i z e s "the s o c i a l o r d e r as con-s i s t i n g o f one c u l t u r a l t r a d i t i o n , t h a t o f t h e p o l i t i c a l l y and e c o n o m i c a l l y most p o w e r f u l group." The i n s t i t u t i o n s , h i s t o r y , v a l u e s , and l i f e s t y l e s o f the dorminant group are p e r p e t u a t e d as a m a t t e r of p o l i c y . The aim o f e d u c a t i o n and p u b l i c p o l i c y i s t o a c c u l t u r a t e t h e m i n o r i t y group t o the c u l t u r e o f t h e dorminant group. The m e n t a l l y r e t a r d e d may be r e g a r d e d as a group t o be a c c u l t u r a t e d i n t o the dominant c u l t u r e o f t h e n o n - r e t a r d e d group. I n t h e c o n f o r m i t y model, each c u l t u r e o r group i s a s m a l l c i r c l e w i t h i n a l a r g e r c i r c l e w h i c h c o n t a i n s a l l s m a l l c i r c l e s - a s o r t o f m e l t i n g p o t . Mercer (1977) argues t h a t when the c o n f o r m i t y model o f s o c i e t y i s the b a s i s f o r p u b l i c p o l i c y , assessment p r a c t i c e s become p a r t of t h e s o c i e t a l mechanism f o r e n f o r c i n g and l e g i t -i m i z i n g c o n f o r m i t y . C o n s e q u e n t l y , t e s t i n g based on c o n f o r m i t y model have been used t o l a b e l , s e g r e g a t e and a s s i g n d i s p r o -p o r t i o n a t e l y s m a l l numbers t o c l a s s e s f o r the g i f t e d c h i l d r e n (Mercer, 1973). The P l u r a l i s t i c model i s c h a r a c t e r i z e d by " c u l t u r a l and - 73 -s t r u c t u r a l p l u r a l i s m " and v i s u a l i z e s c u l t u r a l l y d i v e r s e groups as o r g a n i z e d around a c o r e c u l t u r e t h a t c o n s i s t s o f t h e b a s i c economic and p o l i t i c a l i n s t i t u t i o n s w h i c h h o l d the s o c i e t y t o g e t h e r . There a re v a r y i n g r e l a t i o n s between t h e v a r i o u s c o r e groups o r c o r e c u l t u r e . Some groups may be bo t h c u l t u r -a l l y and s t r u c t u r a l l y absorbed. Other groups may have been a c c u l t u r a t e d t o t h e co r e group b u t have m a i n t a i n e d s u f f i c i e n t s t r u c t u r a l s e p a r a t i s m t o remain i d e n t i f i a b l e . I n t h i s model, a l l c u l t u r e s have e q u i v a l e n t v a l u e . 2.3 S o c i a l P o l i c y Kahn (1969) d e f i n e s p o l i c y as a " s t a n d i n g p l a n , " t h e p r o d u c t of r a t i o n a l e x e r c i s e i n v o l v i n g t h e d e t e r m i n a t i o n o f g o a l s , t h e e x a m i n a t i o n o f a l t e r n a t i v e s , and t h e s e l e c t i o n o f a s t r a t e g y . Tropman and Vasey (.1976) su g g e s t t h a t i n o r d e r t o u n d e r s t a n d t h e meaning o f p o l i c y , i t i s i m p o r t a n t t o r e a l -i z e t h e e x t e n t t o whi c h p o l i t i c a l f o r c e s can shape and a l t e r i t s c h a r a c t e r , and i n t i m e , can d i s t o r t i t . They d e f i n e d the v a r i o u s d i m e n s i o n s o f p o l i c y i n t h e c o n t e x t of p o l i t i c s , p l a n n i n g , p h i l o s o p h y , o r i d e o l o g y and c o n c l u d e d t h a t i f p o l i c y i s implemented by p e o p l e who do not c a r e , o r who are opposed t o t h e p o l i c y , t h e f a i l u r e o f f o l l o w - t h r o u g h can have t h e e f f e c t o f " c a u s i n g the war t o be l o s t . " B o u l d i n g (1976) s i m p l y r e f e r s t o s o c i a l p o l i c y as "another name f o r government p o l i c y " and argues whether one wi s h e s t o d i s t i n g u i s h s o c i a l p o l i c y from economic p o l i c y . T i t m u s s (1974) makes t h e p o i n t t h a t j u s t as p o l i c y can be - 74 -t a k e n t o r e f e r t o t h e p r i n c i p l e s t h a t govern a c t i o n d i r e c t e d towards g i v e n ends, s o c i a l p o l i c y can be t a k e n t o mean r e -d i s t r i b u t i v e command o v e r m a t e r i a l and n o n - m a t e r i a l r e s o u r c e s . I n e s s e n c e , i t i m p l i e s change - cha n g i n g s i t u a t i o n s , systems, p r a c t i c e s and b e h a v i o u r . C r i c h t o n (1980) c a l l s a t t e n t i o n t o the importance o f b o u n d a r i e s i n any c o n t e x t w h i c h i n v o l v e s p o l i c y making. B l a c k (1968) more s p e c i f i c a l l y d e f i n e s p o l i c y as "the g e n e r a l p r i n c i p l e s by wh i c h a government i s g u i d e d i n i t s management o f p u b l i c a f f a i r s , o r t h e l e g i s l a t u r e i n i t s measures." S t r i n g h a m (1974) f u r t h e r r e f i n e s t h e term p o l i c y by s t a t i n g t h a t p o l i c y i s "...a major g u i d e l i n e f o r f u t u r e d i s c r e t i o n a r y a c t i o n . I t i s g e n e r a l i z e d , p h i l o s o p h i c a l l y based and i m p l i e s an i n t e n t i o n and p a t t e r n f o r t a k i n g a c t i o n . " Mann (1975) proceeds t o l i s t s e v e r a l c h a r a c t e r i s t i c s o f p o l i c y problems: (a) t h e y a r e p u b l i c i n n a t u r e , (b) they are v e r y c o n s e q u e n t i a l , (c) t h e y a r e complex, (d) th e y a re dominated by u n c e r t a i n t y , and (e) th e y r e f l e c t and are a f f e c t e d by di s a g r e e m e n t about t h e g o a l s t o be pursued. T h i s s u g g e s t s t h a t a t the v e r y l e a s t , s o c i a l p o l i c y (and hence n o r m a l i z a t i o n p o l i c y ) , i s concerned w i t h b e l i e f s , a t t i t u d e s and b a l a n c e among r e l a t i o n s h i p s and r e s o u r c e s . Q u i t e o f t e n , t h e i n t e n t and purpose o f a p o l i c y must be i n f e r r e d . 2.3.1 Domain o f S o c i a l P o l i c y G i l (1976) d e s c r i b e s the domain o f s o c i a l p o l i c i e s as - 75 -dealing with the following elements of s o c i e t a l existence: (a) the o v e r a l l quality of l i f e i n a society; (b) the c i r -cumstances of l i v i n g of individuals and groups; and (c) the nature of i n t r a - s o c i e t a l human relations among in d i v i d u a l s , groups, and society as a whole. However, he cautions that " a l l past and extant s o c i a l p o l i c i e s are considered to be casually related to the various s o c i a l problems perceived by members of the society at any point i n time." The con-ceptualization of the relationship between s o c i a l p o l i c i e s and s o c i a l problems does not negate the importance or the significance of s p e c i f i c p o l i c i e s as poten t i a l solutions to perceived problems. In analysing natural and s o c i e t a l forces which l i m i t , influence, and intera c t with the key processes and the general domain of s o c i a l p o l i c i e s , G i l (1976) i d e n t i f i e s three forces: (a) Limiting conditions: These are physical and b i o l o g i c a l properties of a society's natural setting and the b i o l o g i c a l and psychological properties of man, (b) i n t r a and int e r s o c i e t a l force f i e l d s : These include i n t r a s o c i e t a l i n t e r e s t group c o n f l i c t s ; society's stage of development i n c u l t u r a l , economic and technological sphere; size and i n s t i t u t i o n a l d i f f e r e n t i a t i o n and complexity of society; and personal, c u l t u r a l , economic, and p o l i t i c a l i n t e r a c t i o n with extra s o c i e t a l forces, and (c; constraining variables: b e l i e f s , values, ideologies, customs and t r a d i t i o n s . In general, G i l ' s paradigm reveals a system of related moderations. For example: The o v e r a l l quality of l i f e and resource - 76 -development a r e dependent on: t h e S o c i e t y ' s s t a g e o f d e v e l o p -ment wh i c h i s r e l a t e d t o p r e v a i l i n g b e l i e f s ; on s t a t u s a l l o c -a t i o n and the c i r c u m s t a n c e s o f l i v i n g o f i n d i v i d u a l s and groups w h i c h are c o n s t r a i n e d by v a l u e s and i d e o l o g i e s ; and on R i g h t s d i s t r i b u t i o n and i n t r a s o c i e t a l human r e l a t i o n s w h i c h a r e con-s t r a i n e d by t r a d i t i o n . These f a c t o r s a f f e c t t h e s i z e and i n -s t i t u t i o n a l d i f f e r e n t i a t i o n ; t h e c o m p l e x i t y o f s o c i e t y ; and the c u l t u r a l , economic and p o l i t i c a l i n t e r a c t i o n w i t h e x t r a s o c i e t a l f o r c e s . 2.3.2 F o r m u l a t i o n o f M e n t a l R e t a r d a t i o n P o l i c y B a u m e i s t e r (1981) notes t h a t t h e f o r m u l a t i o n o f m e n t a l r e t a r d a t i o n p o l i c y i s not an e v e n t , b u t a dynamic p r o c e s s t h a t has i d e n t i f i a b l e components w h i c h o p e r a t e o v e r t i m e : (a) There must be p u b l i c awareness o f a problem and a s i g n i f i c a n t s e n t i -ment by p o w e r f u l elements towards r e c t i f y i n g t h e problem; (b) laws and measures must be f o r m u l a t e d f o r d e a l i n g w i t h some i m p o r t a n t a s p e c t s o f t h e problem; (c) programs must be d e s i g n e d , funded, and implemented; and (d) programs must be e v a l u a t e d and m o d i f i e d . B a u m e i s t e r (1981) f u r t h e r comments t h a t s i g n i f i c a n t s o c i a l p o l i c i e s e v o l v e i n c r e m e n t a l l y and p a r t i a l l y o v e r t i m e , and are o f t e n a l t e r e d by changing p o l i t i c a l s o c i a l and economic con-t i n g e n c i e s . He s u g g e s t s t h a t sometimes, " o r d i n a r y knowledge" may be more i m p o r t a n t i n t h e e f f o r t t o d e a l w i t h s o c i a l p r o b-lems such as mental r e t a r d a t i o n . By " o r d i n a r y knowledge" B a u m e i s t e r (1981) r e f e r s t o knowledge w h i c h i s based on - 77 -common sense, i n t u i t i o n , e x p e r i e n c e , s p e c u l a t i o n , u n d e r s t a n d -i n g o f v a l u e s , a p p r e c i a t i o n o f p o l i t i c a l c o n t i n g e n c i e s , o r knowledge t h a t does n ot owe i t s immediate o r i g i n s t o p r o -f e s s i o n a l t e c h n i q u e s . 2.4 I n s t i t u t i o n a l i z a t i o n , D e - I n s t i t u t i o n a l i z a t i o n and Community L i v i n g L a r s e n (1978) o u t l i n e s two b a s i c p o i n t s o f view r e g a r d -i n g where m e n t a l l y r e t a r d e d and/or handicapped p e r s o n s s h o u l d be s e r v e d . Some b e l i e v e t h a t i n s t i t u t i o n s a r e t h e o n l y , i f not the b e s t , a l t e r n a t i v e f o r r e t a r d e d p e r s o n s , (Throne, 1975); w h i l e o t h e r s argue t h a t s e r v i c e s s h o u l d be p r o v i d e d f o r a l l i n d i v i d u a l s , i r r e s p e c t i v e of t h e i r l e v e l o f f u n c t i o n i n g , i n the community. On the one hand i t i s argued t h a t the s t a t e has usurped p a r e n t a l r e s p o n s i b i l i t i e s f o r "many y e a r s and t h a t i t i s i m p o s s i b l e o r u n f a i r t o t e r m i n a t e such s e r v i c e s now. That t h e handicapped a r e h a p p i e s t and b e s t a d j u s t e d when they a s s o c i a t e w i t h t h e i r own k i n d r a t h e r than competing w i t h t h e i r more a b l e p e e r s where t h e y e x p e r i e n c e f a i l u r e . On the o t h e r hand i t i s argued t h a t the handicapped b e n e f i t more from a s s o c i a t i o n w i t h normal i n d i v i d u a l s o f t h e i r own age group t h a n t h e y do from a s s o c i a t i n g o n l y w i t h o t h e r s who are s i m i l a r l y h andicapped. That i n s t i t u t i o n a l i z a t i o n d e n i e s t h e i n d i v i d u a l many o p p o r t u n i t i e s t o a c q u i r e normal b e h a v i o u r p a t t e r n s t h r o u g h t h e mechanisms o f m o d e l l i n g and i m i t a t i o n . That the s e g r e g a t i o n o f l a r g e numbers o f m e n t a l l y r e t a r d e d i n d i v i d u a l s i n l a r g e i n s t i t u t i o n s f a c i l i t a t e s and p r o l o n g s - 78 -r e t a r d e d b e h a v i o u r ( L a r s e n , 1978). I t has been s u g g e s t e d t h a t because th e m e n t a l l y r e t a r d e d are so d i f f e r e n t from th e g e n e r a l p o p u l a t i o n , the p u b l i c w i l l n ever a c c e p t them i n t o t h e mainstream of community l i f e (Throne, 1975); o r a t l e a s t i n t h e i r immediate neighbourhood w i t h o u t knowledge o f t h e i r problems ( W i l l m s , 1978) . I t appears t h a t t h o s e h o l d i n g t h i s l i n e o f argument are more concerned w i t h t h e d e t r i m e n t a l e f f e c t o f s o c i a l o s t r a c i s m r a t h e r than they are w i t h the b e n e f i c i a l e f f e c t s o f s e g r e g a t e d l i v i n g i n i n s t i t u t i o n a l s e t t i n g s . Are I n s t i t u t i o n s i n s t r i n s i c a l l y bad? P e r h a p s , n o t . I t has been suggested t h a t i n s t i t u t i o n s c an, i f g i v e n adequate f i n a n c i a l s u p p o r t , become " h e a l t h y " p l a c e s f o r even the most s e v e r e l y m e n t a l l y r e t a r d e d ( G o l d b e r g , 1975). T h i s argument i m p l i e s t h a t i n s t i t u t i o n a l i z a t i o n has been d e l e c t e r i o u s t o the handicapped because i n s u f f i c i e n t r e s o u r c e s have p r e v e n t e d the p r o v i s i o n o f adequate programs and c a r e . Those opposed t o i n s t i t u t i o n s , argue t h a t i n c r e a s i n g f i n a n c i a l s u p p o r t of i n s t i t u t i o n s w i l l n o t s u b s t a n t i a l l y improve t h e i r a b i l i t y t o se r v e t h e i r r e s i d e n t s (see note 9, page 2 3 ) . L a r s e n (1978) argues t h a t i n s t i t u t i o n a l i z a t i o n may be " l e a s t l i k e l y t o harm an i n d i v i d u a l who p o s s e s s e s s u p e r i o r i n t e l l e c t u a l and b e h a v i o r a l a b i l i t i e s , and most l i k e l y t o damage an i n d i v i d u a l who has i n t e l l e c t u a l o r b e h a v i o r a l h a n d i c a p s . " I n h i s v i e w , community a l t e r n a t i v e s appear t o have g r e a t e r p o t e n t i a l f o r p r o v i d i n g b e t t e r s e r v i c e s and programs, a t s m a l l e r o r e q u a l - 79 -c o s t s t h a n do i n s t i t u t i o n s . G o l d b e r g (1975) reminds c r i t i c s on a l l s i d e s o f the a r g u -ment t h a t i t must be r e c o g n i z e d t h a t the m a j o r i t y of m e n t a l l y handicapped p e r s o n s do, however, l i v e i n t h e community. That t h e r e i s no massive d r i v e a t t h e p r e s e n t t i m e t o i n c a r c e r a t e any i n d i v i d u a l who i s m e n t a l l y r e t a r d e d and t h a t the w a i t i n g l i s t s i n i n s t i t u t i o n s a r e t h e l o w e s t i n h i s t o r y . He no t e s t h a t t h e r e u s u a l l y a r e s p e c i a l problems t h a t t h e m e n t a l l y r e t a r d e d i n d i v i d u a l p r e s e n t s w h i c h l e a d s t o some form o f s u p e r v i s e d c a r e ; and warns t h a t i n damning t h e l a r g e i n s t i t -u t i o n , t h e r e i s a danger o f s t e r e o t y p i n g t h e workers w i t h i n t h e i n s t i t u t i o n s as o n l y i n t e r e s t e d i n p r o v i d i n g c u s t o d i a l c a r e . G o l d b e r g (1975) t h e n c o n c l u d e d t h a t " d e s p i t e c o n s i d e r -a b l e h a n d i c a p s , c o n s i s t e n t and k i n d l y c a r e as w e l l as a wide gamut o f o c c u p a t i o n a l and r e c r e a t i o n a l a c t i v i t i e s do o c c u r i n i n s t i t u t i o n s i n O n t a r i o . " However, B l a t t and K a p l a n (1966) i n t h e U n i t e d S t a t e s o f /America, and W i l l i n g s t o n (1971) i n O n t a r i o , Canada, have p r o -v i d e d d r a m a t i c expose o f dehumanizing c o n d i t i o n s which e x i s t i n l a r g e r e s i d e n t i a l i n s t i t u t i o n s . 2.4.1 D e - I n s t i t u t i o n a l i z a t i o n and Community Care There a r e some who would d e f i n e " d e - i n s t i t u t i o n a l i z a t i o n " as t h e d i s c h a r g e o f r e s i d e n t s o r p a t i e n t s from i n s t i t u t i o n s i n t o the community. There are o t h e r s who would i n c l u d e i n t h e i r d e f i n i t i o n o f " d e - i n s t i t u t i o n a l i z a t i o n , " the p r o v i s i o n - 80 -within a r e s i d e n t i a l f a c i l i t y for a dignity of l i f e consistent with the normalization p r i n c i p l e (Goldberg, 197 5). Higgin-bottam (1981) observes that successful d e - i n s t i t u t i o n a l i z a t i o n requires pre-existing, comprehensive, c l i n i c a l , vocational and r e s i d e n t i a l support services i n a community based system. At the same time, Higginbottam suggests the integration of ser-vices, at least temporarily, with t r a d i t i o n a l health and mental retardation services including i n s t i t u t i o n s . I t would appear that there i s general agreement regarding one component of d e i n s t i t u t i o n a l i z a t i o n , namely the discharge of i n s t i t u t i o n a l residents from i n s t i t u t i o n s . However, i t seems that there i s disagreement with respect to where they go, why they go there, and how they are treated. The thrust for the development of alternatives to i n s t i t -u tional care for the retarded has come from the National I n s t i t -ute on Mental Retardation, (NIMR), sponsored by the Canadian Association for the Mentally Retarded (CAMR). The NIMR, CAMR and l o c a l chapters, have exerted a strong influence on pro-v i n c i a l planners through publications, films, conferences, workshops, press releases, and advocacy. As a re s u l t , i n almost a l l Canadian Provinces, d e i n s t i t u t i o n a l i z a t i o n projects have been planned and i n some cases actually implemented. For example, Kinkaide (1977, 1980) has reported on the development of community ser v i c e s ' i n the Regions of Edmonton, Alberta, which since 1972, have enabled 450 previously i n s t i t -u tionalized mentally retarded persons to be placed i n independent - 81 -or group home s i t u a t i o n s . A l t h o u g h some acc o u n t s have been p o s i t i v e , o t h e r s have r e p o r t e d q u e s t i o n a b l e b e n e f i t s (Murphy, Rennee, and L u c h i n s , 1972), o r n e g a t i v e outcomes ( K i n k a i d e , 1980). Murphy and h i s c o l l e a g u e s (1972) o b s e r v e d t h a t even i n a " s m a l l " community f a c i l i t y : (a) t h e r e was v e r y l i t t l e i n t e r a c t i o n between r e s i d e n t s and f a m i l y as w e l l as a l a c k o f any a c t i v i t y w h a t e v e r , (b) r e g i m e n t a t i o n and u n i f o r m i t y were common. F o r example; c e r t a i n days were s e t a s i d e f o r s h a v i n g and o t h e r s f o r b a t h i n g ; and (c) i n many c a s e s , t h e r e was no i n t e r a c t i o n between r e s i d e n t s and o t h e r p ersons o r f a c i l i t i e s w i t h i n the community. G o l d b e r g (1975) goes f u r t h e r t o spec-u l a t e t h a t i n some o f t h e n a t u r a l homes o f the m e n t a l l y r e -t a r d e d o l d e r i n d i v i d u a l , l i f e c o u l d c o n s i s t o f s i t t i n g i n f r o n t o f t h e t e l e v i s i o n , w i t h o u t a c c e s s t o a peer group and normal s o c i a l i n t e r a c t i o n . A number o f c r i t i c a l r e p o r t s o f American d e - i n s t i t u t i o n a l -i z a t i o n programmes have appeared i n t h e p a s t s e v e r a l y e a r s ( R e i c h and S i e g e l , 1973; A r n h o f f , 1975; Bassuk and Gerson, 1978; Whitmer, 1980, T a l b o t t , 1979, 1980) s u g g e s t i n g t h a t , i n some s t a t e s , l a r g e numbers o f p r e v i o u s l y i n s t i t u t i o n a l i z e d p e r s o n s have been d i s c h a r g e d from f a c i l i t i e s w i t h l i t t l e o r no advance p l a n n i n g . As a r e s u l t , t h e s e p a t i e n t s now l i v e l o n e l y e x i s t e n c e , w h i l e r e c e i v i n g i n a d e q u a t e s e r v i c e s i n a h o s t i l e s u r r o u n d i n g community. Most o f t h e s e a u t h o r s suggest t h a t d e - i n s t i t u t i o n a l i z a t i o n programmes have been p o l i t i c a l l y m o t i v a t e d w i t h , l i t t l e r e g a r d f o r t h e needs o f c l i e n t s . There appears t o be an i n d i c a t i o n t h a t l a r g e s c a l e reductions of i n s t i t u t i o n a l populations have occurred i n the absence of adequately developed, alternative community re-sources (Bachrach, 1979). Furthermore, i n many states, com-munity based f a c i l i t i e s have been administered i n i s o l a t i o n from state operated i n s t i t u t i o n s (Bassuk and Gerson, 1978) re s u l t i n g i n a lack of integration between the two systems. A number of authors have argued that reductions i n i n s t i t u t i o n a l size must occur i n tandem with the development of community based alternatives (Greenblatt and Glazier, 1975; Ashbaugh and Bradley, 1979). Other authors have stressed that import-ance of providing adequate r e h a b i l i t a t i o n services for c l i e n t s i n the community (Olshansky, 1980; Hatcher and Rasch, 1980). Although most of the papers describing the American s i t u -ation have dealt with p s y c h i a t r i c patients, p a r a l l e l problems appear to e x i s t with the mentally retarded. In discussing the d e i n s t i t u t i o n a l i z a t i o n of mentally retarded persons, Scheerenberger (1976) c r i t i c i z e s the "experts" who have argued for the placement of the retarded i n communities irr e s p e c t i v e of the consequences for the persons involved. On the p o s i t i v e side, Stein and Test (19 80) have reported impressive results with the Mendota Project i n Wisconsin. This i s a c a r e f u l l y organized d e - i n s t i t u t i o n a l i z a t i o n programme providing strongly supportive, structured community services which are integrated with the state hospital system. However, Stein and Test have reported that for d e - i n s t i t u t i o n a l i z e d persons to remain i n the community, ongoing, active support services must be present. - 83 -I n Canada, the most s u c c e s s f u l d e - i n s t i t u t i o n a l i z a t i o n programme appears t o be t h e Saskatchewan p l a n . T h i s p r o -gramme i s r e g a r d e d as a model even i n the American L i t e r a t u r e ( N e u f e l d , 1977, B a c h r a c h , 1979). L i k e the Mendota P r o j e c t , the Saskatchewan p l a n has p r o v i d e d f o r a c t i v e s t r u c t u r e d on-g o i n g community s u p p o r t , i n a system which remains i n t e g r a t e d w i t h t r a d i t i o n a l m e n t a l h e a l t h s e r v i c e s . E l s e w h e r e i n Canada, d e - i n s t i t u t i o n a l i z a t i o n programmes have not been s y s t e m a t i c o r p l a n n e d w i t h o u t p o l i t i c a l exped-i e n c y . As d i s c u s s e d p r e v i o u s l y , (Chapter 1.0 pages 5 and 6) 4 the O n t a r i o P u b l i c S e r v i c e Employees Union (OPSEU) has r a i s e d i s s u e s w i t h the Government o f O n t a r i o r e g a r d i n g d e - i n s t i t u t i o n -a l i z a t i o n programmes. L u s t h a u s , Hanrahan and Lus t h a u s (1979) have r e p o r t e d t h a t r e t a r d e d p ersons " i n t e g r a t e d " i n t o community s e t t i n g s i n Quebec have been f u n c t i o n a l l y i s o l a t e d from non-r e t a r d e d p e o p l e i n t h e s u r r o u n d i n g community. The a u t h o r s a l s o have r e p o r t e d a n e c d o t a l l y , however, t h a t former i n s t i t -u t i o n a l r e s i d e n t s a re g e n e r a l l y p l e a s e d t o be o u t o f the i n s t i t u t i o n a l s e t t i n g s . S c h e e r e n b e r g e r (1974) has p r e s e n t e d a model f o r de-i n s t i t u t i o n a l i z a t i o n . He i n d i c a t e s t h a t i t s h o u l d encompass t h r e e i n t e r r e l a t e d p r o c e s s e s : (a) p r e v e n t i o n o f a d m i s s i o n by 4. The OPSEU r e p o r t (1980) a l l e g e s t h a t d i s c h a r g e s from Govt, i n s t i t u t i o n s have been o r d e r e d on a q u o t a b a s i s w i t h o u t r e f e r e n c e t o the a v a i l a b i l i t y o r q u a l i t y of a l t e r n a t i v e community s e r v i c e s . - 84 -f i n d i n g and d e v e l o p i n g a l t e r n a t i v e methods o f c a r e and t r a i n i n g ; (b) r e t u r n t o t h e community o f a l l i n s t i t u t i o n a l i z e d r e s i d e n t s who have been p r e p a r e d t h r o u g h programmes o f h a b i l i t a t i o n and t r a i n i n g w h i c h w i l l e n a b l e them f u n c t i o n a d e q u a t e l y i n appro-p r i a t e l o c a l s e t t i n g s ; and (c) e s t a b l i s h m e n t and maintenance o f a r e s p o n s i v e r e s i d e n t i a l environment w h i c h p r o t e c t s human and c i v i l r i g h t s and wh i c h c o n t r i b u t e s t o t h e e x p e d i t i o u s r e t u r n o f the i n d i v i d u a l t o normal community l i v i n g whenever p o s s i b l e . 5 2.5 The N o r m a l i z a t i o n P r i n c i p l e R e v i s i t e d The S c a n d i n a v i a n c o u n t r i e s have c h a l l e n g e d the p r e v i o u s r o l e models f o r the r e t a r d e d and have c r e a t e d a c t i o n - o r i e n t e d l e g i s l a t i o n t o f a c i l i t a t e change toward n o r m a l i z a t i o n . The laws o r l e g i s l a t e d s t a t u t e s o f the S c a n d i n a v i a n c o u n t r i e s do n o t embody the e n t i r e framework o f n o r m a l i z a t i o n i n t e n t ; r a t h e r , they o n l y r e p r e s e n t the p e r c e p t i b l e and more e a s i l y l e g i s l a t e d c o r o l l a r i e s of the p r i n c i p l e . A p p r e c i a t i n g the n o r m a l i z a t i o n i d e o l o g y o r p r i n c i p l e i s a d i f f i c u l t p r o -c e s s , and thus i t i s v e r y d i f f i c u l t t o d e s c r i b e t h e many s u b t l e i m p l i c a t i o n s . When i t i s s t a t e d t h a t n o r m a l i z a t i o n means t r e a t i n g t h e r e t a r d e d p e r s o n as n o r m a l l y as p o s s i b l e ( N i r j e , 1969) the l o g i c a l q u e s t i o n i s "what c o n s t i t u t e s normal t r e a t m e n t ? " 5. See C h a p t e r 1.0, S e c t i o n 1.2. 6. Da n i s h A c t No. 192, 1959 and Swedish S t a t u t e No. 940, 1968. - 85 -C e r t a i n l y , any model o f normal t r e a t m e n t would i n v o l v e i n d i v i d -u a l and/or s o c i a l v a l u e s . To d i s c e r n t h e i m p l i c a t i o n s o f n o r m a l i z a t i o n p r i n c i p l e t h e n , one must view the concept as a change p r o c e s s . J u s t as t h e f e m i n i s m movement i s based on a change away from s e x - r o l e s t e r e o t y p i n g , so t h e n o r m a l i z a t i o n p r i n c i p l e i s based on a change away from d e v i a n t r o l e p e r c e p -t i o n s . 2.5.1 I n t e r p r e t a t i o n s o f N o r m a l i t y There are v a r y i n g a t t e m p t s a t t h e d e f i n i t i o n o f "what i s normal" w i t h i n the c o n t e x t o f the n o r m a l i z a t i o n p r i n c i p l e . To some p e o p l e "normal" means "homelike," s i n c e i n s t i t u t i o n a l l i v i n g i s c o n s i d e r e d abnormal ( N e u f e l d , 1980), o r placement i n a community s e t t i n g such as a f a m i l y c a r e f a c i l i t y where the number o f r e s i d e n t s i s fewer t h a n t e n (Maloney and Ward, 1979) . Other p e o p l e c o n s i d e r r e d e s i g n i n g the environment i n a " p o s i t i v e " way f o r b e t t e r s o c i a l f u n c t i o n i n g as e s s e n t i a l t o b e i n g normal (Gunzburg and Gunzburg, 1973; N e u f e l d , 1980). W o l f e n s b e r g e r (1972) r e g a r d s n o r m a l i t y as " c u l t u r e s p e c i f i c " depending on what needs t o be n o r m a l i z e d i n a g i v e n s o c i e t y . The a u t h o r i s aware t h a t i n many d e v e l o p i n g A f r i c a n c o u n t r i e s , t h e r e are no i n s t i t u t i o n s f o r t h e m e n t a l l y r e t a r d e d t h e r e f o r e no need t o n o r m a l i z e t h e l i v e s o f i n s t i t u t i o n a l r e s i d e n t s i n t h e s e c o u n t r i e s . I t i s normal f o r t h e "extended f a m i l y system" t o p r o v i d e f o r t h e c a r e o f r e t a r d e d p e r s o n s i n t h e s o c i e t y . However, t h e r e a r e many t y p e s and shades o f n o r m a l i t y - 86 -and i t would be i m p o s s i b l e t o s i n g l e o u t one p a r t i c u l a r s t a n d -a r d as r e p r e s e n t i n g a t a r g e t o f h y p o t h e t i c a l n o r m a l i t y . 2.5.2 R i g h t s t o N o r m a l i t y The S c a n d i n a v i a n l e g i s l a t i o n s (note 6) s t a t e t h r e e i m p o r t a n t r i g h t s c o n s i s t e n t w i t h more normal t r e a t m e n t o f t h e r e t a r d e d . F i r s t , t h e r e c e p t i o n o f a s e r v i c e i s seen as a r i g h t . I f t h e r e i s a need f o r a s e r v i c e , t h e r e i s a r i g h t t o r e c e i v e i t , and o n l y f o r t h e l e n g t h o f time t h a t t h a t need e x i s t s . F u r t h e r m o r e , t h e r e i s a r i g h t f o r the p r o v i s i o n o f th e s e s e r v i c e s a t home. P a r e n t s a re n o t f o r c e d t o choose i n s t i t u t i o n a l i z a t i o n as the o n l y o p t i o n t o home c a r e . Second, s c h o o l i n g and e d u c a t i o n i s seen as a r i g h t . F i n a l l y , t h e r e i s a r i g h t t o a l t e r n a t i v e accommodation; t h e m e d i c a l - c u s t o d i a l model i s not seen as b e i n g p r a c t i c a l f o r a l l i n d i v i d u a l s . Day (1976) argues t h a t c o n v e n t i o n a l and c o n f o r m i s t l i f e -s t y l e s can be imposed on the m e n t a l l y handicapped i n t h e name of n o r m a l i t y . The a b i l i t y t o make i n f o r m e d c h o i c e r e g a r d i n g s e r v i c e s ; o r t o comprehend and u n d e r s t a n d e d u c a t i o n a l o b j e c t i v e s ; o r t o r e s i d e w i t h o t h e r p e o p l e i n a " r e g u l a r " s o c i e t y are n e c e s s a r y p a r t s t o r i g h t s as w e l l as the a b i l i t y t o use them. G o l d b e r g (1975) d i s c u s s e s t h e problems e n c o u n t e r e d by some i n s t i t u t i o n r e s i d e n t s who "walked away" from t h e i n -s t i t u t i o n and wonders whether t h e r e t a r d e d i n d i v i d u a l s h o u l d be g i v e n "the r i g h t t o have h i s day i n c o u r t . " G o l d b e r g a s k s ; 'fehould one o f t h e consequences o f a c o u r t appearance be p l a c e -- 87 -merit on p r o b a t i o n on c o n d i t i o n t h a t he be f o r c e d t o r e t u r n t o an i n s t i t u t i o n f o r t h e r e t a r d e d ? " G o l d b e r g f u r t h e r s u g g e s t s t h a t the f r e q u e n t r e a s o n f o r recommending many m i l d l y r e t a r d e d boys and g i r l s i n t o i n s t i t u t i o n s i s t h e dilemma r e g a r d i n g the r i g h t t o m a r r i a g e and s e x u a l i t y o f the r e t a r d e d w i t h i n t h e community. He t h e n o b s e r v e s t h a t t h e i n s t i t u t i o n s have been p l a c e d i n an u n t e n a b l e p o s i t i o n r e g a r d i n g t h e h y p o c r i s y o f a s o c i e t y which espouses a n o r m a l i z e d environment f o r t h e r e -t a r d e d , b u t a t t h e same time e x c l u d e s s e x u a l i t y f o r them. Goldbe r g (1975) t h e n s u g g e s t s t h a t " S o c i e t y s h o u l d be c a u t i o u s i n the t h r u s t towards d e - i n s t i t u t i o n a l i z a t i o n i n o r d e r not t o become a n t i - i n s t i t u t i o n a l . I n the ent h u s i a s m f o r a p p l i c a t i o n o f n o r m a l i z a t i o n p h i l o s o p h i e s o f t r e a t m e n t , we s h o u l d n o t i g n o r e i n d i v i d u a l r i g h t s and needs i n c l u d i n g t h e r i g h t t o remain dependent." Ryan and Thomas (1980) agree by s t a t i n g t h a t " i f t h e r i g h t t o n o r m a l i t y i s not t o become a whole s e r i e s o f p r e s s u r e s on m e n t a l l y handicapped p e o p l e t o change and conform t o o t h e r p e o p l e ' s s t a n d a r d s , then t h i s r i g h t must i n c l u d e b o t h t h e r i g h t and the means t o q u e s t i o n t h a t n o r m a l i t y and t o l i v e a d i f f e r e n t l i f e , one t h a t i s an enr i c h m e n t r a t h e r t h a n a d e p r i v a t i o n o f n o r m a l i t y . " 4 r 2.5.3 N o r m a l i z a t i o n S t u d i e s and Arguments A l t h o u g h a f i r m e m p i r i c a l base f o r community-based and n o r m a l i z e d s e r v i c e s does n ot e x i s t ( B a l l a , 1976), t h e r e does e x i s t a v a s t body o f a n e c d o t a l and s u r v e y r e s e a r c h (Birenbaum and S e i f f e r , 1976; M c D e v i t t , S m i t h , Schmidt and Rosen, 1978) - 88 -as well as an increasing number of empirical studies using behavioral instrumentation (Close, 1977; F i o r e l l i and Thurman, 1979) which show generally favourable changes i n resident be-haviour after movement to community l i v i n g arrangements. In a review of the sociology of environments for mentally retarded persons, Tizard (1970) looked at factors within the organization of a f a c i l i t y which interfered with meeting the t o t a l needs of a person i n that f a c i l i t y . Tizard concludes that a highly organized program would be a n t i t h e t i c a l to the normalization p r i n c i p l e . Advocates of normalization i n general have not d i f f e r e n t -iated between the various lev e l s of retardation which should be encouraged to l i v e i n as "home-like" an environment as possible (Goldberg, 1975). On the one hand, Clelland and Sluyter (1973) suggest what they term a "heterobedfast" environment which would be highly heterogeneous of a l l levels of persons with retardation and other persons who are immobile. Such an environment should be a r c h i t e c t u r a l l y designed to stimulate and motivate both the residents and s t a f f . On the other hand, Roos (1970) opts for the maximization of the re-tarded i n d i v i d u a l ' s control over his environment. However, Roos recognizes that perhaps, when given a choice, a retarded i n d i v i d u a l may r e j e c t the "normal" alternative i n favour of a "non-normal" one. In such a case, the normalization p r i n c i p l e would suggest denying the retarded person freedom of choice i n favour of developing the "normal" pattern. - 89 -Go l d b e r g (1975) n o t e s t h a t p e r s o n s w i t h b o r d e r l i n e m ental r e t a r d a t i o n have been e l i m i n a t e d from t h e d e f i n i t i o n o f i n -d i v i d u a l s who a r e m e n t a l l y r e t a r d e d by the American A s s o c -i a t i o n on M e n t a l D e f i c i e n c y (AAMD). He o b s e r v e s t h a t t h i s a c t i o n d i d n o t a u t o m a t i c a l l y n o r m a l i z e t h e l i v e s o f persons w i t h b o r d e r l i n e m e n t a l r e t a r d a t i o n . Removing a l a b e l i s one s t e p , b u t i f s o c i e t y o r t h e community does n o t have a system i n w hich t o program o r p l a n f o r a l l i n d i v i d u a l s , then such a s t e p would a c c o m p l i s h v e r y l i t t l e (Kokaska, 1974). Birenbaum and S e i f f e r (1976) pose t h e f o l l o w i n g q u e s t i o n s : (a) what do p e o p l e who cannot t a k e c a r e o f themselves have i n common w i t h o t h e r human b e i n g s ? (b) Under what s o c i a l con-d i t i o n s are t h e s e common human c h a r a c t e r i s t i c s f o s t e r e d and s u s t a i n e d , and o t h e r l e s s d e s i r e d c h a r a c t e r i s t i c s m o d i f i e d o r made l e s s o b t r u s i v e ? Mesibov (1976) responds t o t h e s e q u e s t i o n s by n o t i n g t h a t n o r m a l i z a t i o n i s not e a s i l y measured o r v a l i d a t e d ; i s not o r i e n t e d toward i n d i v i d u a l c l i e n t s ; does not r e p r e s e n t an e n d u r i n g v a l u e system; and does n ot d e a l w i t h t h e b a s i c d i f -f e r e n c e s between r e t a r d e d and n o n - r e t a r d e d c i t i z e n s . He argues t h a t n o r m a l i z a t i o n does n o t n e c e s s a r i l y improve p u b l i c a t t i t u d e s towards r e t a r d e d c i t i z e n s " s i m p l y by p u t t i n g p e o p l e t o g e t h e r . " Mesibov d e s c r i b e s a r e c o g n i z e d e v a l u a t i o n t o o l f o r n o r m a l i z a t i o n d e v e l o p e d by W o l f e n s b e r g e r and Glenn (1975) as s i m p l y m e asuring c o n f o r m i t y o f s e r v i c e systems t o normal-i z a t i o n p r i n c i p l e ; and r e g a r d s the r e a l i s s u e as the e f f e c t - 90 -of t h e s e systems on t h e i n d i v i d u a l s t h e y a re d e s i g n e d t o s e r v e . Rhoades and Browning (1977) went f u r t h e r t o suggest t h a t n o r m a l i z a t i o n may be o f d i s s e r v i c e t o the common i n t e r e s t s o f t h e m e n t a l l y r e t a r d e d . They b e l i e v e "the f i e l d may be caught up i n a movement wh i c h has t h e p o t e n t i a l o f i n a d v e r t e n t l y d e n y i n g t h e r e t a r d e d p e r s o n the o p p o r t u n i t y t o b u i l d an impor-t a n t t y p e o f m e a n i n g f u l p e e r r e l a t i o n s h i p . " They a l s o ob-s e r v e d t h a t o f t e n p ersons who are l a b e l l e d " d e v i a n t " d e l i b e r -a t e l y seek o ut p e r s o n a l c o n t a c t w i t h t h o s e w i t h whom they share a common e x c e p t i o n a l i t y w h i c h encourages s e l f h e l p o r g a n i z a t i o n s . The most f o r c e f u l c i t i q u e o f t h e p r i n c i p l e o f normal-i z a t i o n i s p r o v i d e d by Thorne (1975), who argues t h a t t r e a t -i n g the m e n t a l l y r e t a r d e d n o r m a l l y w i l l l e a v e them f u n c t i o n i n g as r e t a r d e d . "Retarded by d e f i n i t i o n means r e t a r d e d under o r d i n a r y c o n d i t i o n s . Only e x t r a o r d i n a r y c o n d i t i o n s n o r m a l l y can r e s u l t i n d i m i n i s h i n g r e t a r d e d s t a t e s , i . e . making the r e t a r d e d more normal." He then c o n c l u d e s t h a t " g e n e r a l i z e d a p p l i c a t i o n o f b o t h the n o r m a t i v e p r o c e d u r e s o f the normal-i z a t i o n p r i n c i p l e and o f p r o c e d u r e s o f t r e a t m e n t , t r a i n i n g o r t e a c h i n g t h a t a r e s p e c i a l i z e d , i s l o g i c a l l y c o n t r a d i c t o r y . " The r e v i e w o f t h e l i t e r a t u r e on n o r m a l i z a t i o n r e v e a l s o p p o s i t e views and arguments. T h i s i s p r o b a b l y due t o t h e p h i l o s o p h i c a l r a t h e r than e m p i r i c a l base on which i t s t a n d s . 2.5.6 Dimensions and I m p l i c a t i o n s o f N o r m a l i z a t i o n O u t l i n e d below a r e t h e di m e n s i o n s and i m p l i c a t i o n s o f - 91 -the n o r m a l i z a t i o n p r i n c i p l e , p r e s e n t e d i n f o u r g e n e r a l c a t e -g o r i e s ( W o l f e n s b e r g e r and Glenn (1975): (a) Non-deviant s o c i a l i n t e r p r e t a t i o n s ; (b) n o n - d e v i a n t s t r u c u t r e s ; (c) s o c i a l and p h y s i c a l i n t e g r a t i o n ; and (d) p r o v i s i o n o f human r i g h t s . These dim e n s i o n s and i m p l i c a t i o n s have been used as the b a s i s f o r t h e d e s i g n o f t h i s s t u d y . Non-deviant s o c i a l i n t e r p r e t a t i o n s r e f e r t o c e r t a i n elements w h i c h a r e c u l t u r a l l y i n t e r p r e t e d by s o c i e t y as b e i n g d e v i a n t , and thus i n c r e a s e t h e r e t a r d a t e s s t i g m a . To a c h i e v e i n t e g r a t i o n a t a f u n c t i o n a l l e v e l one must n o t o n l y n o r m a l i z e the p r e s e n t a t i o n o f t h e r e t a r d a t e b u t a l s o n o r m a l i z e the p e r -c e p t i o n o f s o c i e t y . F o r example, l a b e l s w h i c h suggest de-v i a n c y such as "Retarded A d u l t s Workshop" i n c r e a s e p e r c e i v e d d e v i a n c y . The appearance and h i s t o r y o f a b u i l d i n g can i n -c r e a s e community p e r c e p t i o n toward d e v i a n c y . I n the p h y s i c a l c o n t e x t , a s e t t i n g s h o u l d be c l o s e t o s o c i a l l y i n t e g r a t i v e p h y s i c a l r e s o u r c e s and a f a c i l i t y must a l s o be i n a l o c a t i o n c o n s i s t e n t w i t h i t s f u n c t i o n , f o r example, workshop s h o u l d be i n an i n d u s t r i a l a r e a . Manpower i d e n t i t y must be a p p r o p r i a t e t o t he needs o f t h e pe o p l e s e r v e d . F o r example, m e d i c a l p e r s o n n e l o p e r a t i n g o r s u p e r v i s i n g a r e s i d e n t i a l f a c i l i t y w ould i n c r e a s e p e r c e i v e d d e v i a n c y . N o n - d e v i a n t s t r u c t u r e s r e l a t e t o t h e s t r u c t u r e o f a p r o -gram i n a f a s h i o n c o n s i s t e n t w i t h the persons age l e v e l , r a t h e r t h a n some d e v i a n t r o l e model. W h i l e s t r u c t u r e s a l s o a f f e c t s o c i a l i n t e r p r e t a t i o n o f t h e p e r s o n , t h e y a l s o d i r e c t l y - 92 -a f f e c t t h e i r b e h a v i o u r , thus i n c r e a s i n g the degree o f p e r -c e i v e d d e v i a n c y ( V a i l , 1967) . The i n t e r n a l and e x t e r n a l appearance of t h e f a c i l i t y must be a p p r o p r i a t e f o r the age o f the p e r s o n s e r v e d . He o r she s h o u l d have a r i g h t t o p e r s o n a l p o s s e s s i o n s and engage i n a g e - a p p r o p r i a t e a c t i v i t i e s ( N i r j e , 1969) . S o c i a l and p h y s i c a l i n t e g r a t i o n r e l a t e t o o p p o r t u n i t i e s f o r c o n t a c t , b o t h i n the p h y s i c a l and i n t h e s o c i a l sense. A p h y s i c a l l y i n t e g r a t e d s e t t i n g a l l o w s f o r , o r even f a c i l i t a t e s s o c i a l i n t e g r a t i o n and t h u s maximizes a p e r s o n ' s p a r t i c i p a t i o n i n t h e mainstream o f s o c i e t y . P h y s i c a l i n t e g r a t i o n a l l o w s f o r the f o l l o w i n g d i m e n s i o n s : (a) p r o x i m i t y t o community s e r v i c e s and t o t h e main d i s t r i b u t i o n o f t h e p o p u l a t i o n , (b) a c c e s s i n terms o f speed and c o n v e n i e n c e t o t r a n s p o r t a t i o n r o u t e s enab-l i n g c l o s e r c o n t a c t t o t h e p u b l i c , and (c) d i s p e r s a l i n terms o f not c o n g r e g a t i n g r e t a r d e d p e o p l e i n l a r g e r numbers th a n the s u r r o u n d i n g community can absorb o r i n t e g r a t e . There s h o u l d be r e g u l a r o p p o r t u n i t i e s f o r normal i n t e g r a t i o n i n the f o l l o w -i n g a r e a s : R e s i d e n c e , R e c r e a t i o n , S o c i a l i n t e r a c t i o n s - e.g. w o r s h i p , shopping and r o u t i n e a s p e c t s o f l i v i n g - e d u c a t i o n , t r a i n i n g o r work. There s h o u l d be i n t e g r a t i o n o f g e n e r i c s e r v i c e s aimed a t s e r v i n g c i t i z e n s i n g e n e r a l r a t h e r than a s p e c i f i c d i s a b i l i t y group. Most s e r v i c e s such as h e a l t h , e d u c a t i o n , w e l f a r e o r employment c o u l d be d e l i v e r e d t o a l l p e o p l e t h r o u g h g e n e r i c s e r v i c e s . The p r o v i s i o n o f human r i g h t s r e l a t e t o a l l r i g h t s which - 93 -are a v a i l a b l e t o a l l c i t i z e n s such as l e g a l r i g h t s t o v o t e , own p r o p e r t y , t e s t i f y and s t a n d t r i a l o r t o engage i n l e g a l c o n t r a c t s . The r i g h t t o e d u c a t i o n and c h o i c e o f work as w e l l as s e x u a l and m a r r i a g e r i g h t s a r e c o n s i d e r e d i m p o r t a n t a s p e c t s o f n o r m a l i z a t i o n . I n pure forms, t h e s e d i m e n s i o n s and i m p l i c a t i o n s o f t h e n o r m a l i z a t i o n p r i n c i p l e r a i s e s e v e r a l q u e s t i o n s . F o r example, I s the s o c i e t y s u f f i c i e n t l y ready t o accommodate the r i g h t s o f t h e handicapped even though i t may i n f r i n g e on the r i g h t t o remain s e p a r a t e o r d i f f e r e n t ? What i s t h e a t t i t u d e o f t h e community towards th e m e n t a l l y r e t a r d e d ? Does the implement-a t i o n o f t h e s e r i g h t s r e q u i r e a d d i t i o n a l f i n a n c i a l burden t o the s o c i e t y ? Are s o c i e t y ' s i n s t i t u t i o n a l mechanisms s u f f i c -i e n t l y f l e x i b l e f o r the accommodation of t h e s e r i g h t s ? M e n o l a s c i n o (1977) o u t l i n e s t e n ways by w h i c h n o r m a l i z -a t i o n p r i n c i p l e can be a s s e r t e d . These ways ar e e s s e n t i a l l y s i m i l a r t o t h e d i m e n s i o n s of n o r m a l i z a t i o n w h i c h have been d e s c r i b e d above. However, M e n o l a s c i n o emphasizes t h a t even the most s e v e r e l y r e t a r d e d p e r s o n s h o u l d be p r o v i d e d w i t h the o p p o r t u n i t y t o engage i n work t h a t i s c u l t u r a l l y normal i n t y P e / q u a l i t y o r s e t t i n g , and t h a t s e r v i c e s s h o u l d meet the same s t a n d a r d s as o t h e r comparable s e r v i c e s and f a c i l i t i e s f o r t h e n o n - r e t a r d e d - not be s t r i c t e r nor l e n i e n t . 2.6 Community Adjustment o f D e - I n s t i t u t i o n a l i z e d M e n t a l l y R e t a r d e d A d u l t s The major f i n d i n g s i n t h e l i t e r a t u r e t h a t r e l a t e t o the - 94 -community adjustment o f p r e v i o u s l y i n s t i t u t i o n a l i z e d m e n t a l l y r e t a r d e d a d u l t s a re as f o l l o w s : (a) There i s no c o n s i s t e n t r e l a t i o n s h i p between age a t t h e time o f r e l e a s e and community adjustment. McCarver and C r a i g (1974) found no s i g n i f i c a n t r e l a t i o n s h i p i n e i t h e r d i r e c t i o n f o l l o w i n g a r e v i e w o f twenty f o u r s t u d i e s ; (b) t h e l e n g t h o f i n s t i t u t i o n a l i z a t i o n may be a f a v o u r a b l e i n d i c a t o r f o r c u s t o d i a l t y p e s of placement. Windle (1962). However, a number of r e s e a r c h e r s have r e -p o r t e d no s i g n i f i c a n t r e l a t i o n s h i p between l e n g t h o f i n s t i t -u t i o n a l i z a t i o n and outcome i n t h e community. C l a r k e t a l (1968), E d g e r t o n (1967); (c) t h e r e i s a c o n s i s t e n t l a c k of r e l a t i o n s h i p between d i a g n o s t i c c a t e g o r y ( o r g a n i c v e r s u s c u l t u r a l f a m i l i a l ) and adjustment ( H e a l , S i gelman and S w i t z k y , 1978); (d) w h i l e i n t e l l e c t u a l l e v e l has been a n a l y s e d i n numerous s t u d i e s , most s t u d i e s have found no m e a n i n g f u l r e l a t i o n s h i p . S t u d i e s s u p p o r t i n g a p o s i t i o n r e l a t i o n s h i p are a l s o numerous (McCarver and C r a i g , 1974; H e a l e t a l , 197 8 ) . Some s t u d i e s found t h a t t h e more r e t a r d e d a re more l i k e l y t o remain i n the community compared t o the l e s s r e -t a r d e d as t h e y have fewer needs ( G o l l a y , 1976); (e) p e r s o n a l -i t y appears t o be r e l a t e d t o community adjustment a l t h o u g h t h e e v i d e n c e i s not e x t r e m e l y s t r o n g ; (f) p e r s o n a l appearance i s p o s i t i v e l y r e l a t e d t o s u c c e s s i n t h r e e o f f o u r s t u d i e s , the p r e s e n c e o f p h y s i c a l h a n d i c a p s b e a r s no c o n s i s t e n t r e l a t i o n s h i p t o outcome (Heal e t a l , 1978); (g) v o c a t i o n a l s k i l l s appear t o be somewhat a s s o c i a t e d w i t h community s u c c e s s (McCarver and C r a i g , 1974); a l s o s o c i a l s k i l l s were - 95 -s i g n i f i c a n t l y r e l a t e d t o s u c c e s s i n f i v e o f s i x s t u d i e s i n which t h e y were examined. 2.7 The Re t a r d e d A d u l t i n t h e Community S t u d i e s o f r e t a r d e d a d u l t s i n the community have been c o n t r a d i c t o r y i n t h e i r f i n d i n g s . However, the f o l l o w i n g p i c t u r e t e n d s t o emerge. A l a r g e m a j o r i t y o f m e n t a l l y r e t a r d e d persons t e n d t o f u n c t i o n i n s m a l l e r l e s s s t r u c t u r e d , more n o r m a l i z e d community s e t t i n g s . N i h i r a & N i h i r a (1974, 1975). There i s a h i g h e r p r e v a l e n c e o f m a l a d a p t i v e b e h a v i o u r s i n i n s t i t u t i o n s when compared t o community s e t t i n g s . H i g h e r f u n c t i o n i n g r e t a r d e d p e r s o n s d e f i n e d by l e v e l o f r e t a r d a t i o n e x h i b i t e d l e s s m a l a d a p t i v e b e h a v i o u r t h a n l o w e r l e v e l f u n c t i o n -i n g r e s i d e n t s (Cohen e t a l , 1977). A l s o , I.Q. has been p o s i t -i v e l y c o r r e l a t e d w i t h l e g a l problems. P e r s o n s w i t h m i l d and b o r d e r l i n e l e v e l s of r e t a r d a t i o n e n c o u n t e r the most number o f i n c i d e n t s ( B e l l , 1976). However, some s t u d i e s r e l a t i n g c l i e n t a d a p t a t i o n a f t e r placement i n t o community-based r e s i d -ences from i n s t i t u t i o n s i n d i c a t e t h a t d e i n s t i t u t i o n a l i z a t i o n i s n o t l i v i n g up t o e x p e c t a t i o n (Conroy, 1977). I n g e n e r a l , i t i s the o c c u r r e n c e o f m a l a d a p t i v e b e h a v i o u r s t h a t account f o r a s i g n i f i c a n t p o r t i o n o f the v a r i a n c e i n p r e d i c t i n g com-munity a d j u s t m e n t . E n v i r o n m e n t a l v a r i a b l e s such as t h e e m o t i o n a l a t t i t u d e s o f c a r e t a k e r s a r e i m p o r t a n t t o c l i e n t s u c c e s s . Community - 96 -placement i s c o n t r a i n d i c a t e d i f the community l a c k s s u p p o r t i v e s e r v i c e s o r shows e v i d e n c e o f m i s c o n c e p t i o n s about m e n t a l r e t a r d a t i o n ( S u t t e r , 1980). The s u c c e s s o r f a i l u r e o f p l a c e -ment was d e f i n e d as the r e t u r n t o the i n s t i t u t i o n o f p r e -v i o u s l y i n s t i t u t i o n a l i z e d r e t a r d e d i n d i v i d u a l s w i t h i n one y e a r of community placement. A l s o , homes i n w h i c h a d d i t i o n a l f a m i l y members l i v e d had s i g n i f i c a n t l y h i g h e r f a i l u r e r a t e s t h a n homes i n which t h e r e were no r e l a t i v e s . On the o t h e r hand, homes which had lower f a i l u r e r a t e s , had s i g n i f i c a n t l y more r e l a t i v e s l i v i n g nearby ( S u t t e r , 1980). I n g e n e r a l , the system o f s u p p o r t a v a i l a b l e t o the c a r e t a k e r and c l i e n t might be the most i m p o r t a n t f a c t o r i n d e t e r m i n i n g whether a r e t a r d e d p e r s o n remains i n the community and r e c e i v e s a s s i s t a n c e , o r r e t u r n s t o t h e i n s t i t u t i o n ( C r a w f o r d , A i e l l o and Thompson, 1979). R e t a r d e d p e r s o n s who were n o t s u c c e s s f u l i n t h e i r i n i t i a l c o m p e t i t i v e j o b placements were more l i k e l y t o have a secondary e m o t i o n a l d i s a b i l i t y t h a n t h o s e who were s u c c e s s -f u l i n t h e i r placements ( F u l t o n , 1975). T r a i n i n g i n s o c i a l s k i l l s has been shown t o c o r r e l a t e w i t h community placement o f m e n t a l l y r e t a r d e d a d u l t s ( S t a c y , D o l e y s and M a l c o l m , 1979). Most i m p o r t a n t i s the f i n d i n g by Eyman e t a l (1979) t h a t some o f the p r i n c i p l e s o f n o r m a l i z -a t i o n are r e l a t e d t o the l e v e l o f s o c i a l development o f r e t a r d e d i n d i v i d u a l s . However, they a l s o found t h a t i n g e n e r a l , o l d e r , l e s s r e t a r d e d r e s i d e n t s improved i n o v e r a l l - 97 -a d a p t i v e b e h a v i o u r " r e g a r d l e s s o f where they l i v e d . " On t h e o t h e r hand, Eyman and C a l l (1977) found a much h i g h e r p r e -v a l e n c e of b e h a v i o u r problems i n t h e i n s t i t u t i o n s as compared t o community p l a c e m e n t s ; a l s o t h a t p r o f o u n d l y r e t a r d e d i n -d i v i d u a l s , u n l e s s handicapped by n o t b e i n g a b l e t o move around, e x h i b i t more i n j u r i o u s b e h a v i o u r t h a n m i l d l y r e t a r d e d p e r s o n s . I n an e x t e n s i v e c a t e g o r i z a t i o n o f reas o n s f o r s u c c e s s o r f a i l u r e i n community p l a c e m e n t s , Moen e t a l (1975) found t h a t t h e most common reaso n s f o r f a i l u r e a r e b e h a v i o u r o r i e n t e d r a t h e r than m e d i c a l l y o r i e n t e d . The o p p o s i t e l i n e o f argument has been used by opponents o f n o r m a l i z a t i o n and proponents of the c l i n i c a l p e r s p e c t i v e t o advance t h e c o n t i n u a t i o n of i n -s t i t u t i o n a l i z a t i o n . T r a n s p o r t a t i o n , f i n a n c e s and program p l a n n i n g a re t h r e e causes t h a t p l a g u e t h e development and the e x t e n s i o n o f l e i s u r e a c t i v i t i e s f o r r e t a r d e d a d u l t s ( C o r c o r a n & F r e n c h , 1977) . I n summary, s u c c e s s f u l independent l i v i n g i s r e l a t e d t o p e r s o n a l maintenance, c l o t h i n g c a r e and u s e , s o c i a l l y appro-p r i a t e b e h a v i o u r , demonstrated s k i l l s i n s y m b o l i c o p e r a t i o n s and t o some e x t e n t on t h e l e v e l o f i n t e l l i g e n c e . R e t u r n from community placement t o the i n s t i t u t i o n i s r e l a t e d t o money management, c l e a n l i n e s s , s o c i a l b e h a v i o u r , and meal p r e p a r -a t i o n ( S halock & H a r p e r , 1978) . McCarver and C r a i g (1974) suggest t h a t one r e a s o n f o r d e c r e a s i n g s u c c e s s r a t e i n r e c e n t - 98 -y e a r s may be t h e i n c r e a s i n g c o m p l e x i t y o f s o c i e t y . They a l s o n o t e d t h a t the a b i l i t y l e v e l s o f i n s t i t u t i o n a l p o p u l a t i o n has g r a d u a l l y d e c r e a s e d over the y e a r s , and t h u s , a h i g h e r r a t e o f community f a i l u r e may be a t t r i b u t a b l e t o t h e s e a b i l i t y f a c t o r s . However, t h e term s o c i a l b e h a v i o u r c o v e r s a number o f v a r i a b l e s such as p e r s o n a l c h a r a c t e r i s t i c s , e m o t i o n a l s t a b i l i t y and s o c i a l s k i l l s w h i c h r e n d e r s i t a d i f f i c u l t sub-j e c t t o s t u d y . The f r u s t r a t i o n and c o n t r a d i c t i o n s o f s e v e r a l s t u d i e s and the governments' slow response t o the needs o f the r e t a r d e d a d u l t has prompted some t o observe t h a t "Community Care has no s p e c i f i c meaning a t a l l . E v e r y f u n c t i o n e x e r c i s e d by any k i n d o f government on b e h a l f o f o r f o r the b e n e f i t o r p r o t e c t i o n o f t h e i n h a b i t a n t s o f any s t a t e i s d e f i n a b l y com-munity c a r e As i n a l l b u r e a u c r a c i e s , change t a k e s p l a c e a t t h e speed o f t h e M i l l s o f God." ( G i t t i n s , 1978). However, t h e r e seems t o be an agreement t h a t s u c c e s s f u l community c a r e and o f t h e p r o c e s s o f d e i n s t i t u t i o n a l i z a t i o n depend l a r g e l y on the c o n t i n u i t y o f c a r e and t h e e x i s t e n c e o f a p p r o p r i a t e community s e r v i c e s f o r even the most d i f f i c u l t c l i e n t (Eyman & B o r t h w i c k , 1980). I n t h i s r e g a r d , the n a t u r e o f community a t t i t u d e s has been one o f s o c i a l ambivalence (Eyman, Meyers & T a r j a n , 1973). On one hand t h e r e i s a sense o f f e a r and t h r e a t t o major s o c i a l i n s t i t u t i o n s w hich i s g e n e r a t e d by the v e r y e x i s t e n c e o f the incompetent. On the o t h e r hand t h e r e i s a c l i m a t e o f sympathy and a w i l l i n g -ness t o a c c e p t t h e r e t a r d e d w i t h i n the community and t o assume r e s p o n s i b i l i t y f o r h i s c a r e and h a b i l i t a t i o n . These op p o s i n g - 99 -s t a n c e s l e a d t o a l t e r n a t i v e s t a t u s and r o l e a s s i g n m e n t s , d i f f e r i n g programs, and a s i t u a t i o n of s o c i a l a m b i v a l e n c e . 2.7.1 The Na t u r e of Community S e r v i c e s S c h e e r e n b e r g e r (1974) p r o v i d e s a comprehensive model f o r community s e r v i c e s . He d e s c r i b e s t h o s e s e r v i c e s w h i c h must be a v a i l a b l e and tho s e w h i c h s h o u l d be a v a i l a b l e , and c o n t r a s t s t h e s e w i t h R e s i d e n t i a l S e r v i c e s . Community S e r v i c e s w h i c h must be a v a i l a b l e a r e : (a) Adequate h o m e - l i k e environment, such as n a t u r a l home, f o s t e r home, group home, n u r s i n g home, and independent l i v i n g -f a c i l i t y ; (b) h e a l t h s e r v i c e s ; (c) e d u c a t i o n and t r a i n i n g ; (d) employment - open and s h e l t e r e d ; and t r a n s p o r t a t i o n . Community s e r v i c e s w h i c h s h o u l d be a v a i l a b l e a r e : (a) R e c r e a t i o n a l ; (b) R e l i g i o u s ; and (c) A l l o t h e r s e r v i c e s a v a i l a b l e t o any c i t i z e n , e.g. c o m m e r c i a l , w e l f a r e , f a m i l y coun-s e l l i n g , and p r o t e c t i v e s e r v i c e s . S c h e e r e n b e r g e r r e g a r d s t h e s e r v i c e s which s h o u l d be a v a i a b l e as v e r y e s s e n t i a l and c a u t i o n s t h a t most r e s i d e n t i a l f a c i l i t i e s s h o u l d f u n c t i o n as R e g i o n a l C e n t r e s , o f f e r i n g s p e c i a l i z e d and s h o r t term s e r v i c e s and programs, and s p e c i a l i z e d back up and c o n s u l t a n c y s e r v i c e s . He f u r t h e r d e f i n e d "Community" as "a s o c i a l group o f any s i z e whose members r e -s i d e i n a s p e c i f i c l o c a l i t y , s h a re government, and have a common c u l t u r a l and h i s t o r i c a l h e r i t a g e , " o r "a g e n e r a l pop-u l a t i o n h a v i n g a common i n t e r e s t o r i n t e r d e p e n d e n c y i n the - 100 -d e l i v e r y o f s e r v i c e s . " He c o n c e p t u a l i z e s t h e i n t e r r e l a t i o n -s h i p s o f communities as c o m p r i s i n g o f t h e i n d i v i d u a l ' s com-munity and t h e r e s i d e n t i a l community w i t h i n the s o c i o -p o l i t i c a l community, a l l c o n t a i n e d i n the l a r g e r s o c i e t a l ) s t r u c t u r e . He makes the s t r o n g p o i n t t h a t the community t h a t i s a v a i l a b l e t o t h e r e t a r d e d s h o u l d o f f e r "the l e a s t r e s t r i c t i v e environment." He t h e n d e f i n e s f o u r i n t e g r a n t s t o e f f e c t i v e community programming as the s e t t i n g of s t a n d a r d s by a m o n i t o r i n g agency, back-up s e r v i c e s and s u p p o r t , adequate f i n a n c i a l r e s o u r c e s , and l e g a l advocacy system. These i n -t e g r a n t s s h o u l d m e d i a t e between t h e Community and t h e R e s i d e n t i a l f a c i l i t i e s . M e n o l a s c i n o and E a ton (1980) p r o v i d e a h i e r a r c h y o f r e s i d e n t i a l o p t i o n s a c c o r d i n g t o t h e i r degrees o f r e s t r i c t i v e -n e s s ; from t h e l e a s t r e s t r i c t i v e t o the most r e s t r i c t i v e i n the f o l l o w i n g o r d e r : (a) P r i m a r y home o r independent l i v i n g ; (b) l i v i n g w i t h f a m i l y o r r e l a t i v e s ; (c) f o s t e r c a r e ; (d) s m a l l a l t e r n a t i v e l i v i n g u n i t s ; (e) group homes; (f) r e s i d -e n t i a l c a r e f a c i l i t i e s - s u p e r v i s e d ; (g) i n t e r m e d i a t e c a r e f a c i l i t i e s - s k i l l e d m e d i c a l s u p e r v i s i o n a v a i l a b l e ; (h) com-munity-based n u r s i n g homes; ( i ) s m a l l c o n g r e g a t e c a r e i n s t i t -u t i o n s ( R e g i o n a l C e n t r e s ) ; ( j ) l a r g e c ongregate c a r e i n s t i t -u t i o n s ( P r o v i n c i a l h o s p i t a l s ) . M e n o l a s c i n o and E a ton suggest t h a t the Community-based - 101 -system o f s e r v i c e must b e g i n near t h e m i d d l e o f the s c a l e w i t h group homes, b u t t o meet the v a r i e d needs o f r e t a r d e d p e r s o n s , t h e system s h o u l d p r o v i d e a continuum o f r e s i d e n c e s t h a t encourage t h e s e l f s u f f i c i e n c y o f the i n d i v i d u a l . They observe t h a t r e s i d e n t i a l systems, by and l a r g e , have remained s t u c k a t t h e 'group home' concept f o r much o f the 70's. They a l s o a n t i c i p a t e a f u t u r e s h i f t from "the p r o f e s s i o n a l knows b e s t " p o s i t i o n t o one o f sh a r e d p a r e n t / a d u l t / p r o f e s s i o n a l d e c i s i o n making, and i n c r e a s e d r e c o g n i t i o n o f t h e r i g h t s o f th e handicapped. H e a l , Sigelman and S w i t z k y (1978) d e v e l o p e d a taxonomy o f Community R e s i d e n t i a l F a c i l i t y , CRF, a l t e r n a t i v e s as f o l l o w s : (a) Group Homes whi c h a r e d i f f e r e n t i a t e d from each o t h e r a c c o r d i n g t o s i z e and n a t u r e o f o c c u p a n t s ; (b) P r o t e c t e d e nvironments such as n u r s i n g homes, f o s t e r f a m i l y c a r e and s h e l t e r e d v i l l a g e s ; (c) T r a i n i n g Programs such as workshop d o r m i t o r i e s i n which the l i v i n g u n i t s , s e r v i n g r e t a r d e d a d u l t s i s a s s o c i a t e d w i t h a s h e l t e r e d workshop; and (d) Semi-independent u n i t s i n which l e s s t h a n 24 hours s u p e r v i s i o n i s p r o v i d e d . 2.8 The Needs o f t h e R e t a r d e d A d u l t Armour (1979) d e s c r i b e s t h e needs o f t h e r e t a r d e d a d u l t a s , i n many r e s p e c t s , s i m i l a r t o the needs o f a l l b e i n g s . These are m a t e r i a l , p s y c h o l o g i c a l and s o c i a l needs. M a t e r i a l l y , a l l b e i n g have a need f o r f o o d , s h e l t e r , - 102 -warmth and c o m f o r t , money, f a c i l i t i e s t o p r e s e r v e h e a l t h , c l o t h i n g , t r a n s p o r t a t i o n , and a b i t o f t e r r i t o r y . On t h e p s c y h o l o g i c a l s i d e a re the needs f o r s e c u r i t y , s a t i s f a c t i o n , accomplishment t o f e e d the s e l f esteem, enjoyment and f u n , company and a f f e c t i o n , t r a i n i n g and e d u c a t i o n , s e x u a l s a t i s -f a c t i o n , and a d v i c e and c o u n s e l l i n g . The s o c i a l needs i n -c l u d e p r o t e c t i o n and l e g a l r i g h t s , the p r o v i s i o n o f some o t h e r n e c e s s i t i e s such as e s s e n t i a l s e r v i c e s - t r a n s p o r t a t i o n , h e a l t h c a r e and e d u c a t i o n . There i s a l s o l e g a l need f o r thos e who may need i t . Bush (1977) s u r v e y e d the needs o f the i n t e l l e c t u a l l y h andicapped and t h e i r f a m i l i e s i n New Z e a l a n d , and came t o the c o n c l u s i o n t h a t the c a r e and needs o f each i n t e l l e c t u a l l y h a ndicapped p e r s o n s h o u l d be a p p r o p r i a t e t o t h a t p e r s o n ' s i n d i v i d u a l r e q u i r e m e n t s . These r e q u i r e m e n t s change t h r o u g h o u t the p e r s o n ' s l i f e . T h i s c o n c l u s i o n i s c o n s i s t e n t w i t h t h a t o f Z i p p e r l e n (197 5) i n t h e U n i t e d S t a t e s w i t h r e s p e c t t o the need f o r i n d i v i d u a l i z e d p r o b l e m - s o l v i n g . 2.9 Summary The above r e v i e w o f l i t e r a t u r e r e g a r d i n g the i s s u e o f m e n t a l l y r e t a r d e d a d u l t s i n t h e community and the s o c i a l p o l i c y o f n o r m a l i z a t i o n r e v e a l s t h e f o l l o w i n g i m p o r t a n t a s p e c t s : (a) The v a r i e d c o n c e p t s and meaning o f m e n t a l r e t a r d a t i o n i n -f l u e n c e the ty p e o f c a r e t h a t i s p r o v i d e d i n a g i v e n s o c i e t y . - 103 -(b) I n s t i t u t i o n a l and p r o f e s s i o n a l a c t i v i t i e s enhance l a b e l -i n g and d e v i a n t p e r c e p t i o n s i n the s o c i e t y t h u s l e a d i n g t o the development o f s o c i a l mechanisms f o r t h e containment and c o n t r o l o f r e t a r d e d p e r s o n s . More i m p o r t a n t l y , the " d e v i a n t -i z i n g p r o c e s s " i s r e g a r d e d as a key f a c t o r on how a s o c i e t y p e r c e i v e s the m e n t a l l y r e t a r d e d i n t h e i r m i d s t . The p o s i t i o n t h a t has been t a k e n i n t h i s s t u d y i s t h a t the c a r r y - o v e r o f d e v i a n t l a b e l s and d e v i a n t s t r u c t u r e s from i n s t i t u t i o n s f o r the r e t a r d e d t o t h e community l e a d s t o d e v i a n t - t y p e community s e r v i c e s . (c) N o r m a l i z a t i o n i s a change p r o c e s s away from d e v i a n t r o l e p e r c e p t i o n s and w h i c h c h a l l e n g e s e s t a b l i s h e d s o c i a l norms and r a i s e s q u e s t i o n s w i t h r e s p e c t t o r i g h t s and p r i v i l e g e s . N o r m a l i z a t i o n p r o c e s s may be viewed as l e a d i n g t o a c o n f o r m i t y model o f s o c i e t y . The key a s p e c t o f normal-i z a t i o n i s n o t n e c e s s a r i l y on outcome, b u t such p r o c e s s e s as n o n - d e v i a n t s o c i a l i n t e r p r e t a t i o n s , n o n - d e v i a n t s t r u c t u r e s , s o c i a l and p h y s i c a l i n t e g r a t i o n , and the p r o v i s i o n of human r i g h t s . (d) The arguments and l i t e r a t u r e f i n d i n g s on i s s u e s r e g a r d i n g d e - i n s t i t u t i o n a l i z e d r e t a r d e d a d u l t s i n the com-mu n i t y , are i n most p a r t s , c o n t r a d i c t o r y . There i s l i t t l e o r no i n f o r m a t i o n w h i c h r e l a t e t o the i n d i v i d u a l needs o f r e t a r d e d a d u l t s i n t h e community, as opposed t o t h e i r c o l -l e c t i v e needs. More i m p o r t a n t l y , t h e r e has been no st u d y o f which t h e a u t h o r i s aware, which r e l a t e i n d i v i d u a l community s e r v i c e needs t o t h e p r i n c i p l e o f n o r m a l i z a t i o n . - 104 -CHAPTER 3.0 CONCEPTUAL AND METHODOLOGICAL GUIDELINES The purpose o f t h i s c h a p t e r i s t h r e e f o l d : t o d e s c r i b e t h e v a r i o u s t h e o r e t i c a l and m e t h o d o l o g i c a l g u i d e l i n e s i n o r d e r t o demonstrate the manner i n whi c h they s e r v e as the so u r c e o f c o n c e p t u a l and a n a l y t i c a l frameworks used i n the s t u d y ; t o r e l a t e t h e s e frameworks t o t h e d a t a base w h i c h i s the f o c u s of the s t u d y ; and t o p r e s e n t the d e s i g n by whi c h the s t u d y i s c a r r i e d o u t . The t h e o r e t i c a l and m e t h o d o l o g i c a l g u i d e l i n e s used i n the st u d y have come from t h e d i s c i p l i n e s o f e d u c a t i o n ( K e r r , 1976a, 1976b; Dworkin, 1977), S o c i a l S c i e n c e s ( W o l f e n s b e r g e r , 1972, G i l , 1976) and M e d i c i n e (Kessner e t a l , 1973; Brook & A p p e l , 1973) . 3.1 P o l i c y Concept I n C h a p t e r s 1.0 and 2.0, " n o r m a l i z a t i o n " has been v a r i o u s -l y r e f e r r e d t o as p r i n c i p l e o r p o l i c y . Dworkin (1977) s e p a r -a t e s t h e two by s t a t i n g as f o l l o w s : I c a l l ' p o l i c y ' t h a t k i n d o f s t a n d a r d t h a t s e t s o u t a g o a l t o be r e a c h e d , g e n e r a l l y an improvement i n some economic, p o l i t i c a l o r s o c i a l f e a t u r e of t h e community I c a l l ' p r i n c i p l e ' a s t a n d a r d t h a t i s t o be observed....because i t i s a r e q u i r e m e n t o f j u s t i c e o r f a i r n e s s o r some o t h e r d i m e n s i o n o f m o r a l i t y . Thus, a d i s t i n c t i o n i s drawn between p o l i c y and p r i n c i p l e , the former b e i n g d e s c r i p t i v e of g o a l s , the l a t t e r o f r i g h t s . - 105 -L e g a l l y , arguments of p o l i c y j u s t i f y a p o l i t i c a l d e c i s i o n by showing t h a t t h e d e c i s i o n advances some c o l l e c t i v e g o a l s , w h i l e arguments o f p r i n c i p l e j u s t i f y such a d e c i s i o n by show-i n g t h a t i t r e s p e c t s some r i g h t (Dworkin, 197 7 ) . I n the l e g a l sense t h e r e f o r e , e i t h e r a p r i n c i p l e o r a p o l i c y may be used as j u s t i f i c a t i o n f o r a d e c i s i o n . K e r r (1977a) t a k e s t h e view t h a t when a d e c i s i o n r e g a r d i n g what i s t o be done i s y e t t o be made, i t would seem more c o r -r e c t t o say t h a t a p r i n c i p l e has been adopted f o r w h i c h a p o l i c y might be d e c i d e d . The d i s t i n c t i o n s drawn by b o t h K e r r and Dworkin appear t o h i n g e on t h e s p e c i f i c a t i o n of c o n d i t i o n s . Dworkin (1977) notes t h a t a p r i n c i p l e does not s e t c o n d i t i o n s ; i t p r o v i d e s a r e a s o n f o r a p a r t i c u l a r argument. K e r r ' s example s u g g e s t s t h a t th e e v o l u t i o n o f a p r i n c i p l e i n t o p o l i c y form r e q u i r e s s e l e c t i o n from a number o f a c t i o n s which i n d i v i d u a l s may choose t o p e r -form i n a g i v e n s i t u a t i o n and t h a t th e s e l e c t i o n i t s e l f s h o u l d s u p p o r t the " r e a s o n , " t h a t i s , t h e p r i n c i p l e . I t may be argued t h a t i n K e r r ' s example, what i s s t a t e d i s a p o l i c y , b e h i n d w h i c h l i e s t h e p r i n c i p l e o f e q u i t y . How-ev e r i n u s i n g th e framework w h i c h t h i s s t u d y a d o p t s , K e r r ' s d e f i n i t i o n o f p o l i c y , as "a c a t e g o r y o f a c t i o n " w i l l be ad-h e red t o , and t h e r e f o r e " p o l i c i e s " are t a k e n t o be s t a t ements w h i c h s p e c i f y , more e x a c t l y than p r i n c i p l e s , i n t e n t , d i r e c t i o n and a c t i o n . A f u r t h e r d i s t i n c t i o n t o be k e p t i n mind i s t h a t one might a p p e a l t o a p r i n c i p l e t o j u s t i f y a p o l i c y . - 106 -Thus, a p r i n c i p l e i s seen t o be o f a h i g h e r , more g e n e r a l -i z e d o r d e r t h a n a p o l i c y and can be t hought of as a f unda-mental b e l i e f about, o r s t a n c e t o w a r d s , a p a r t i c u l a r con-s t i t u e n c y . I t i s i n o t h e r words, a v a l u e o r i e n t a t i o n . However, some i n c o n s i s t e n c i e s o c c u r i n t h e manner i n w h i c h p o l i c y and p r i n c i p l e a r e a u t h o r i t a t i v e l y d e f i n e d . I n l e g a l t erms, f o r example, B l a c k (1968) d e f i n e s p o l i c y as the g e n e r a l p r i n c i p l e s by w h i c h a government i s g u i d e d i n i t s management of p u b l i c a f f a i r s , o r the l e g i s l a t u r e i n i t s measures. The l e g a l n o t i o n o f p o l i c y , t h e r e f o r e , r e f e r s t o the p r o b a b i l i t y t h a t what i s e f f e c t e d i n law w i l l enhance s o c i a l w e l l - b e i n g . Thus, t h e r e i s a p r o t e c t i v e f a c t o r i n l e g i s l a t e d p o l i c y i n t h a t i t p u r p o s e f u l l y seeks t o m a i n t a i n th e s o c i a l good. T h i s l e g a l d e f i n i t i o n p o i n t s t o o v e r l a p s i n d e f i n i t i o n s o f p o l i c y and p r i n c i p l e ; however, and i n so d o i n g a i d i n d e f i n i t i o n , t h a t p o l i c i e s may be j u s t i f i e d by a p p e a l i n g t o p r i n c i p l e s . 3.1.1 P o l i c y A n a l y s i s K e r r (1976a) l o o k e d a t e d u c a t i o n a l p o l i c y and s p e c i f i e s f o u r p o l i c y c o n d i t i o n s w h i c h s e r v e t o d i s t i n g u i s h p o l i c y from r e l a t e d c o n c e p t s . These a r e : C o n d i t i o n 1. Some a u t h o r i z i n g agent (Aa) o b l i g a t e s i t s e l f t o d i r e c t some im p l e m e n t i n g agent (Ai) t o a c t i n a c c o r d w i t h some s p e c i f i e d c o n d i t i o n a l i m p e r a t i v e ( I ) . C o n d i t i o n 2. The c o n d i t i o n a l i m p e r a t i v e (I) must be o f t h e form t o do something w h i c h c o u n t s as some s p e c i f i e d - 107 -X - i n g whenever, w i t h o u t e x c e p t i o n , s p e c i f i e d c o n d i t i o n s (C) o c c u r . C o n d i t i o n 3. The a u t h o r i z i n g agent (Aa) u n d e r t a k e s t h e o b l i g -a t i o n ( c o n d i t i o n 1) f o r t h e purpose o f e f f e c t i n g some s p e c i f i e d s t a t e o f a f f a i r s (S) and t o do so w i t h o u t v i o l a t i n g any r e s t r i c t i v e r u l e s (R) by w h i c h (Aa) would c l a i m t o a b i d e . C o n d i t i o n 4. The a u t h o r i z i n g agent's o b l i g a t i o n can be r e -v i s e d and y e t not be v i o l a t e d b o t h i f t h e a u t h o r i z i n g agent announces h i s r e v i s i o n o f t h e c o n d i t i o n a l imper-a t i v e from 1 t o l ' t o t h o s e persons who can b r i n g about c o n d i t i o n s C and c'and i f t h e a u t h o r i z i n g agent g i v e s c o n s i d e r a t i o n due t h e views o f t h e r e l e v a n t p u b l i c as d e f i n e d by t h e p o l i t i c a l and m o r a l c o n t e x t s o f the i n i t i a l p o l i c y d e c i s i o n and i t s r e v i s i o n . I f K e r r ' s f o u r c o n d i t i o n s are met f o r any p a r t i c u l a r s t a t e m e n t , t h e r e f o r e , what we a r e d e a l i n g w i t h i s a p o l i c y , r a t h e r t h a n a p r i n c i p l e , a p l a n , a programme, o r any o t h e r number o f c o n c e p t s w h i c h m i g h t , w i t h o u t some means o f d i f f e r -e n t i a t i o n , be m i s t a k e n f o r a p o l i c y . I n t h i s s t u d y , t h e o p e r a t i o n a l d e f i n i t i o n o f " p o l i c y " (Chapter 1.0 p. 49) has been segmental!zed i n t o two com-pone n t s ; (a) p r i n c i p l e and (b) p o l i c y . F o r the purposes o f a n a l y s i s , p r i n c i p l e w i l l be r e g a r d e d as a fundamental v a l u e o r i e n t a t i o n w h i c h may j u s t i f y a p o l i c y , and p o l i c y as - 108 -one category of actions which i s planned and undertaken with p a r t i c u l a r purposes i n mind. Social p o l i c y , therefore i s a policy which has a s o c i a l purpose, and l e g i s l a t e d p o l i c y , that (social or medical) p o l i c y , the source of which i s enacted l e g i s l a t i o n . Further synthesis of policy analysis has been provided using G i l ' s (1976) framework for policy analysis. G i l spec-i f i e s that analysis and linkage of policy and data may be achieved through: descriptive analysis of the issues dealt with by the p o l i c y ; analysis of the implications of policy for d i s t r i b u t i o n a l processes; and the evaluation of the correspondence between the consequences of po l i c y and the general requirements of the community or society for develop-ment of services, or between value positions. 3.2 Normalization Concept In Chapter 2.0, i t has been shown that normalization i s c u l t u r a l l y r e l a t i v e (Wolfensberger, 1972) and that there are few studies which are directed towards normalization; and that studies r e l a t i n g to retarded adults l i v i n g i n the com-munity are often contradictory. Butler and Bjaanes (1977) addressed the question of whether l i v i n g i n a community f a c i l i t y i s q u a l i t a t i v e l y superior to l i v i n g i n an i n s t i t u t i o n , and found that there i s very l i t t l e basis with which to indicate that community r e s i d e n t i a l f a c i l i t i e s a ctually have a p o s i t i v e e f f e c t . They - 109 -c o n c l u d e d t h a t d i f f e r e n t t y p e s o f environments r e s u l t i n d i f f e r e n t k i n d s o f n o r m a l i z a t i o n . T h e i r f i n d i n g s are sup-p o r t e d by E d g e r t o n (1976) who f i n d s t h a t t h e q u a l i t y o f l i f e i n a l t e r n a t i v e community r e s i d e n c e s v a r i e s c o n s i d e r a b l y from one s e t t i n g t o a n o t h e r . T h i s s t u d y t h e r e f o r e t a k e s the p o s i t i o n t h a t the oper -a t i o n a l d e f i n i t i o n of n o r m a l i z a t i o n w i l l have t o r e l a t e t o the s t u d y environment o r community, i n t h i s i n s t a n c e , t h e G r e a t e r Vancouver Region o f the p r o v i n c e o f B r i t i s h Columbia (Appendix A ) . The m e t h o d o l o g i c a l p r o c e d u r e i s f u r t h e r des-c r i b e d i n t h i s c h a p t e r . Three o f t h e f o u r dimensions o f n o r m a l i z a t i o n (Chapter 2.0) i d e n t i f i e d by W o l f e n s b e r g e r and Glenn (1975) have been used t o d e v e l o p f i v e c r i t e r i a f o r t h e measurement o f normal-i z a t i o n (Appendix A ) . These a r e : n o n - d e v i a n t s o c i a l i n t e r -p r e t a t i o n s ; n o n - d e v i a n t s t r u c t u r e s ; and s o c i a l and p h y s i c a l i n t e g r a t i o n . The f o u r t h d i m e n s i o n , p r o v i s i o n o f human r i g h t has n ot been measured. Non-deviant s o c i a l i n t e r p r e t a t i o n s and n o n - d e v i a n t s t r u c t u r e s a r e t a k e n t o r e l a t e t o t h e name, n a t u r e , and type o f s e r v i c e w h i c h i s b e i n g made a v a i l a b l e . S o c i a l and p h y s i c a l i n t e g r a t i o n as w e l l as n o n - d e v i a n t s t r u c t u r e s have been t a k e n t o r e l a t e t o t h e l o c a t i o n of a s e r v i c e and t h e amount of i n t e g r a t i o n t h a t t h e s e r v i c e p r o v i d e s f o r r e t a r d e d and non-r e t a r d e d a d u l t s . The o p e r a t i o n a l d e f i n i t i o n o f n o r m a l i z a t i o n i s t h e r e f o r e , - 110 -t h a t i n t e r p r e t a t i o n o f n o r m a l i z a t i o n w h i c h has been g i v e n w i t h i n the G r e a t e r Vancouver a r e a o f B r i t i s h Columbia. From t h i s i n t e r p r e t a t i o n t h e c r i t e r i a f o r the e v a l u a t i o n o f normal-i z a t i o n c o n t e n t i n community s e r v i c e s i s deve l o p e d t o c o v e r t h r e e o f t h e f o u r d i m e n s i o n s of n o r m a l i z a t i o n suggested by W o l f e n s b e r g e r and Glenn (197 5) . 3.3 Needs and S e r v i c e s In C h a pter 1.0, p. 49-50 need i s d e f i n e d as an i n d i v i d u a l n e c e s s i t y - s o c i a l , m e d i c a l , p s y c h o l o g i c a l , v o c a t i o n a l , educ-a t i o n a l , r e c r e a t i o n a l o r r e s i d e n t i a l - wh i c h has been i d e n t -i f i e d by a team o f c a r e g i v e r s a t Woodlands a t the time t h e i n d i v i d u a l i s d i s c h a r g e d t o t h e community. C o n s e q u e n t l y , i n t h i s s t u d y , areas o f need as l i s t e d above are t h e same as t h e areas o f s e r v i c e , t h e r a t i o n a l e b e i n g t h a t need o c c a s i o n s s e r -v i c e , i f t h e r e i s not a need, t h e n t h e r e w i l l n o t be a s e r v i c e . The i d e a i s , by f o l l o w i n g needs which have been i d e n t i f i e d , t o community s e r v i c e s w h i c h have been used t o address them, one w i l l r e l a t e needs t o s e r v i c e s . By s u b s e q u e n t l y measuring t h e n o r m a l i z a t i o n c o n t e n t o f t h e s e s e r v i c e s u s i n g a s e t o f c r i t e r i a a l i n k w i l l be p r o v i d e d between t h e d a t a base and the con-c e p t u a l framework. 3.4 D e s i g n o f Study The n a t u r e o f t h e s t u d y r e q u i r e s some means w i t h w h i c h t o d e f i n e n o r m a l i z a t i o n i n t h e a r e a o f s t u d y . Having d e f i n e d n o r m a l i z a t i o n , i t w i l l t h e r e f o r e be n e c e s s a r y t o e s t a b l i s h - I l l -some c r i t e r i a w i t h which t o measure the d i f f e r e n t a s p e c t s o f the d e f i n i t i o n as w e l l as t h e manner f o r g a t h e r i n g d a t a and m a i n t a i n i n g the v a r i o u s r e l a t i o n s h i p s o f the s t u d y . 3.4.1 D e t e r m i n i n g n o r m a l i z a t i o n i n G r e a t e r Vancouver Region Brook and A p p e l (1973) d e v e l o p e d a method f o r q u a l i t y of c a r e assessment i n m e d i c a l c a r e i n which t h e y used the im-p l i c i t and e x p l i c i t judgement of p e e r s . I m p l i c i t judgements r e l y on the s u b j e c t i v e o p i n i o n o f i n d i v i d u a l judges and no p r e - d e t e r m i n e d c r i t e r i a are used. E x p l i c i t judgements r e l y on p r e - d e t e r m i n e d c r i t e r i a s e t by group agreement. Brook and A p p e l (1973) f i n d t h a t I m p l i c i t - p r o c e s s judge-ment and e x p l i c i t - p r o c e s s judgement are a c c u r a t e i n b e t t e r t h a n 65% o f t h e c r i t e r i a used; whereas i m p l i c i t - o u t c o m e judgement i s l e s s r e l i a b l e . F o r i m p l i c i t judgement, Brook and A p p e l used random sample o f p r o f e s s i o n a l s ( i n t h i s i n -s t a n c e p h y s i c i a n s ) i n t h e h o s p i t a l under s t u d y . E x p l i c i t judgement i n v o l v e d the use o f o u t s i d e ( p h y s i c i a n s ) p r o -f e s s i o n a l s who were not w o r k i n g i n t h e h o s p i t a l under s t u d y . They o b t a i n e d more r e l i a b l e and v a l i d r e s u l t s w i t h measure-ment of p r o c e s s t h a n w i t h measurement of outcome. T h i s s t u d y t h e r e f o r e u t i l i z e s i m p l i c i t and e x p l i c i t judgements i n d e t e r m i n i n g what i s c o n s i d e r e d as "normal-i z a t i o n o f s e r v i c e " i n the G r e a t e r Vancouver R e g i o n . The s t u d y i s based on t h e p r e m i s e t h a t the p o l i c y o f n o r m a l i z a t i o n - 112 -l e a d s t o a b e t t e r q u a l i t y o f c a r e o r b e t t e r q u a l i t y of s e r v i c e i n t h e community. I n o t h e r words, h i g h l e v e l s of n o r m a l i z a t i o n l e a d t o h i g h l e v e l s o f q u a l i t y of c a r e o r s e r v i c e . T h e r e f o r e , the s t u d y i s a p r o c e s s s t u d y w h i c h assumes t h a t a measure o f p r o c e s s i s an i n d i r e c t measure o f q u a l i t y . I n C h a p t e r 2.0, i t has been d i s c u s s e d t h a t t h e r e are d i f f e r e n t i n t e r p r e t a t i o n s of n o r m a l i z a t i o n . The d i s c u s s i o n on l a b e l l i n g and d e v i a n c e i n d i c a t e s t h a t t h e r e e x i s t s a p r o -f e s s i o n a l and n o n - p r o f e s s i o n a l p o i n t s o f view r e g a r d i n g the c a r e of m e n t a l l y r e t a r d e d p e r s o n s . I n C h apter 1.0 i t has been shown t h a t advocate and v o l u n t e e r groups perhaps e n t e r t a i n r e l a t i v e l y wide views o f n o r m a l i z a t i o n r e l a t i v e t o p r o f e s s i o n a l s i n the f i e l d . A t h i r d p o i n t o f v iew may be e n t e r t a i n e d by a c i t i z e n who i s n e i t h e r a p r o f e s s i o n a l i n t h e f i e l d o r m ental r e t a r d a t i o n nor an advocate f o r t h e m e n t a l l y r e t a r d e d . I n o r d e r t o d e f i n e n o r m a l i z a t i o n i n t h e s t u d y a r e a , i t i s n e c e s s a r y t o c o n s i d e r t h e t h r e e p o s s i b l e p o i n t s o f view. T h i s i s a c h i e v e d by a c o m b i n a t i o n of i m p l i c i t and e x p l i c i t p r o c e s s judgement w h i c h has been p r o v i d e d by p r o f e s s i o n a l s i n the f i e l d o f m e n t a l r e t a r d a t i o n who a r e i n v o l v e d i n s p e c i f i c s e r v i c e s under measurement; and c i t i z e n s who have been r a n -domly chosen from th e t e l e p h o n e d i r e c t o r i e s and who a r e not p r o v i d i n g s e r v i c e i n the f i e l d o f m ental r e t a r d a t i o n . There a r e two groups of p r o f e s s i o n a l s : (a) Those p r o -f e s s i o n a l s who a r e w o r k i n g i n government s e r v i c e o r i n s t i t u t i o n s f o r m e ntal r e t a r d a t i o n ( i n t h i s i n s t a n c e , Woodlands); and (b) - 113 -t h o s e p r o f e s s i o n a l s who are w o r k i n g o u t s i d e o f government s e r v i c e . The f i r s t group a r e assumed t o be t h e i n t e r p r e t e r s o f p o l i c y d i r e c t i v e s w h i l e t h e second group o f p r o f e s s i o n a l s may be r e a s o n a b l y assumed t o be impleraentors o f p o l i c y w h i c h has been d i r e c t e d t o t h e community. I n o r d e r t o answer the q u e s t i o n : "What c o n s t i t u t e s n o r -mal t r e a t m e n t f o r the m e n t a l l y r e t a r d e d i n G r e a t e r Vancouver a r e a o f B r i t i s h Columbia?" a l i s t o f p r o f e s s i o n a l s from each of t h e seven are a s o f s e r v i c e ( S e c t i o n 3.3) i s c o m p i l e d from s t a f f d i r e c t o r y o f the M i n i s t r y o f Human Resources i n the s t u d y a r e a , and a n o t h e r l i s t o f p r o f e s s i o n a l s i s c o m p i l e d from p r o f e s s i o n a l A s s o c i a t i o n d i r e c t o r i e s i n t h e same a r e a . The t a b l e o f random numbers i s used t o o b t a i n two p r o f e s s i o n a l s i n each l i s t . A t o t a l o f 28 p r o f e s s i o n a l s a re o b t a i n e d f o r th e seven areas o f s e r v i c e . I n o t h e r words, t h e r e a r e two p r o f e s s i o n a l s f o r each a r e a o f s e r v i c e , f o r example two p s y c h o l o g i s t s w o r k i n g i n government s e r v i c e and two psycho-l o g i s t s w o r k i n g o u t s i d e of government s e r v i c e . 14 c i t i z e n s were randomly o b t a i n e d from t h e t e l e p h o n e d i r e c t o r i e s o f t h e G r e a t e r Vancouver a r e a . S u b j e c t s were c o n t a c t e d by t e l e p h o n e , l e t t e r o r p e r s o n a l c o n t a c t i n o r d e r t o o b t a i n t h e i r agreement t o p a r t i c i p a t e i n d e f i n i n g n o r m a l i z a t i o n (Appendix A ) . A p a n e l o f t h r e e "judges" f o r each of t h e seven a r e a s of s e r v i c e was s e t up as f o l l o w s : 1 p r o f e s s i o n a l member from government s e r v i c e , 1 p r o f e s s i o n a l member from t h e community and o u t s i d e o f government s e r v i c e , - 114 -1 c i t i z e n A second p a n e l o f 'judges' was s i m i l a r l y s e t up t o p r o v i d e a measure o f r e l i a b i l i t y o f r e s p o n s e s . Each p a n e l member was the n p r e s e n t e d w i t h : (a) a s i m p l i -f i e d d e f i n i t i o n o f me n t a l r e t a r d a t i o n , (b) an e x a c t l i t e r a t u r e d e f i n i t i o n o f n o r m a l i z a t i o n p r i n c i p l e as g i v e n by one o f t h e o r i g i n a t o r s o f the p r i n c i p l e ( N i r j e , 1969) and (c) e x a c t government p o l i c y s t a t e m e n t s r e g a r d i n g n o r m a l i z a t i o n p r i n c i p l e as p o l i c y i n B r i t i s h Columbia. (Appendix B ) . Immediately f o l l o w i n g t h e s e s t a t e m e n t s a r e t h r e e p a i r s o f st a t e m e n t s (A, B, C) whi c h d e s c r i b e v a r i o u s l e v e l s o f t r e a t m e n t and/or s e r v i c e and whi c h have been d e v e l o p e d from d i f f e r e n t l i t e r a t u r e i n t e r p r e t a t i o n s o f n o r m a l i z a t i o n p r i n c i p l e . (Appendix © ) . Each p a i r o f s t a t e m e n t s r e p r e s e n t s a l e v e l o f n o r m a l i z a t i o n as f o l l o w s : A, N o r m a l i z i n g ; B, S u b n o r m a l i z i n g ; and C, L e a s t N o r m a l i z i n g o r D e v i a n t p r o c e s s . (Appendix B ) . Each judge w o r k i n g i n i s o l a t i o n , was th e n asked t o check o f f (>/) o n e sentence i n each p a i r o f se n t e n c e s a c c o r d i n g t o h i s o r her u n d e r s t a n d i n g o r p e r c e p t i o n o f most n o r m a l i z i n g , s u b n o r m a l i z i n g o r l e a s t n o r m a l i z i n g s e n t e n c e s . Two of t h e t h r e e judges must check o f f t h e same sentence i n o r d e r f o r t h a t s e n t e n c e t o be used as measurement c r i t e r i a . One o f the two judges must be t h e c i t i z e n member o f p a n e l i n o r d e r n o t t o o b t a i n an e n t i r e l y p r o f e s s i o n a l judgement. To v a l i d a t e t h e r e s u l t s , a second p a n e l o f j u d g e s , s i m i l a r l y composed, was asked t o check o f f t h e s e n t e n c e s . Agreement - 115 -between the two p a n e l s of judges was t h e n examined. The d e f i n i t i o n a l s e n t e n c e s f o r each a r e a o f s e r v i c e w h i c h has been o b t a i n e d from th e i m p l i c i t and e x p l i c i t j udge-ments are used t o d e v e l o p measurement c r i t e r i a f o r each s e r -v i c e , (Appendix G). Community s e r v i c e s a r e t h e n s c o r e d as f o l l o w s ; 3 f o r n o r m a l i z i n g o r t h e r a p e u t i c s e r v i c e ; 2 f o r sub-n o r m a l i z i n g o r m a i n t a i n i n g t y p e of s e r v i c e ; and 1 f o r t h e l e a s t n o r m a l i z i n g o r c u s t o d i a l o r d e v i a n t s e r v i c e . The v a r i o u s c r i t e r i a f o r each o f the t h r e e c a t e g o r i e s are g i v e n in"Measures o f S e r v i c e s " (Appendix C ) . 3.4.2 O r g a n i z a t i o n and D e s i g n The h y p o t h e s i s r e q u i r e s t h a t t h e s t u d y p o p u l a t i o n be o r g a n i z e d i n two groups (Chapter 1.0). Group A c o m p r i s e s of m e n t a l l y r e t a r d e d a d u l t s who had been d i s c h a r g e d b e f o r e the i n t r o d u c t i o n o f t h e n o r m a l i z a t i o n p o l i c y by t h e p r o v i n c i a l government. The p e r i o d from J a n u a r y 1, 19 69 t o December 31, 197 3 has been r e g a r d e d i n t h i s s t u d y as t h e " p r e - n o r m a l i z a t i o n p e r i o d . " T h i s p e r i o d a l s o r e l a t e s t o t h e m e d i c a l model of c a r e when the M i n i s t r y o f H e a l t h had the r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n . I n 1975, the M i n i s t r y o f Human Resources assumed r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n s e r v i c e s . There-f o r e , the p e r i o d from January 1, 1974 t o December 31, 1975 i s r e g a r d e d i n t h i s s t u d y as the p e r i o d o f t r a n s i t i o n , and no d a t a r e l a t i n g t o t h i s p e r i o d was g a t h e r e d . The p e r i o d from J a n u a r y 1, 1975 t o December 31, 1979 i s - 116 -t h e r e f o r e t h e " n o r m a l i z a t i o n p e r i o d . " Thus the s t u d y c o v e r s f i v e y e a r s b e f o r e and a f t e r t h e i n t r o d u c t i o n o f the p o l i c y o f n o r m a l i z a t i o n . The d e s i g n used i n g a t h e r i n g d a t a has been adopted from K e s s n e r , K a l k and S i n g e r (1973) . K e s s n e r and h i s c o l l e a g u e s used what they c a l l " T r a c e r s " i n a s s e s s i n g the q u a l i t y o f h e a l t h . The t r a c e r concept i s borrowed from f o r m a l s c i e n c e s and m e d i c i n e where r a d i o a c t i v e t r a c e r elements a r e i n j e c t e d i n t o t h e body and f o l l o w e d as t hey come i n c o n t a c t w i t h v a r i o u s body organs t o measure how t h e s e organs t a k e up minute amounts o f e lements. Thus, t r a c e r s a r e used t o shed l i g h t on how p a r t i c u l a r p a r t s o f a system works, not i n i s o l a t i o n , b u t i n r e l a t i o n t o one a n o t h e r . I n t h i s s t u d y , the t r a c e r c oncept has been used t o i d e n t i f y and f o l l o w the i n d i v i d u a l needs o f r e t a r d e d a d u l t s from th e i n s t i t u t i o n t o community s e r v i c e s . (See C h a p t e r 4.0 f o r more d e t a i l ) . K e s s n e r and h i s c o l l e a g u e s s p e c i f y c e r t a i n c o n d i t i o n s w h ich are n e c e s s a r y f o r use o f t r a c e r method. These a r e : (a) A t r a c e r s h o u l d be r e l a t i v e l y w e l l d e f i n e d . T h i s has been a c h i e v e d by the use o f needs as t r a c e r s and d e f i n i n g i n d i v i d u a l needs as s p e c i f i c f o r c e r t a i n s e r v i c e c a t e g o r i e s . F o r example, a r e s i d e n t i a l need i n v o l v e s l i v i n g i n a f a m i l y house, a h o s t e l , a group home o r an i n s t i t u t i o n ; (b) t h e - 117 -p r e v a l e n c e r a t e s h o u l d be h i g h enough t o p e r m i t t h e c o l l e c t i o n o f d a t a from a l i m i t e d p o p u l a t i o n sample. T h i s s t u d y uses the e n t i r e p o p u l a t i o n as d e f i n e d by s e t b o u n d a r i e s and a v o i d s the use o f sample. Moreover, the number o f s u b j e c t s i n t h e s t u d y has been deemed h i g h enough t o meet t h i s r e q u i r e m e n t ; (c) t h e n a t u r a l h i s t o r y o f the s i t u a t i o n s h o u l d v a r y w i t h u t i l i z a t i o n . Each o f the stu d y y e a r s has e x p e r i e n c e d d i s c h a r g e o f r e t a r d e d a d u l t s from Woodlands t o the community, f o r w h i c h community s e r v i c e s have been p r o v i d e d ; (d) t h e t e c h n i q u e s o f management s h o u l d be w e l l d e f i n e d . There a r e s e t g u i d e l i n e s w i t h r e s p e c t t o how a g i v e n s e r v i c e i s t o be p r o v i d e d ; and (e) t h e e f f e c t s o f ( n o n - s o c i a l ) o t h e r f a c t o r s on the t r a c e r must be u n d e r s t o o d . Some o f the f a c t o r s w h i c h may a f f e c t how an i n d i v i d u a l ' s need i s met i n the community have been i d e n t i f i e d i n Ch a p t e r s 1.0 and 2.0. Some o f t h e s e a re p u b l i c a t t i t u d e , advocacy, p r o -f e s s i o n a l i n p u t , f a m i l y r e l a t i o n s h i p , and b u r e a u c r a t i c d e l a y s . U s i n g t h e t r a c e r c o n c e p t , t h e i n d i v i d u a l needs o f p r e -v i o u s l y i n s t i t u t i o n a l i z e d m e n t a l l y r e t a r d e d a d u l t s a re i d e n t i f i e d a t Woodlands from r e c o r d s , and t r a c e d r e t r o s p e c t i v e l y t o t h e community s e r v i c e s w h i c h have been used t o address t h e s e needs. 3.5 Summary I n t h i s C h a p t e r , c o n c e p t u a l and m e t h o d o l o g i c a l g u i d e l i n e s have been d i s c u s s e d . The c o n c e p t s o f P o l i c y and o f p r i n c i p l e have been - 118 -d i f f e r e n t i a t e d . A l s o , t h e framework f o r the a n a l y s i s o f p o l i c y as w e l l as the components o f p o l i c y have been p r e s e n t e d ( K e r r , 1977a, G i l , 1976). The f o u r c o n d i t i o n s o f p o l i c y o u t l i n e d by K e r r (1977a) a r e r e g a r d e d as e s s e n t i a l i n making a d i s t i n c t i o n as t o what con-s t i t u t e s p o l i c y (a c a t e g o r y o f a c t i o n s ) and what c o n s t i t u t e s p r i n c i p l e (the r e a s o n f o r a c t i o n s ) . I n o r d e r t o d e f i n e " n o r m a l i z a t i o n , " i n t h e s t u d y a r e a , i m p l i c i t and e x p l i c i t p r o c e s s judgements have been used (Brook and A p p e l , 1973), t o d e v e l o p measurement c r i t e r i a f o r community s e r v i c e s . The o r g a n i z a t i o n and d e s i g n o f the s t u d y has been des-c r i b e d as i n v o l v i n g the g r o u p i n g o f the s u b j e c t s i n t o p r e -n o r m a l i z a t i o n and n o r m a l i z a t i o n c a t e g o r i e s as d i c t a t e d by t h e r e q u i r e m e n t s o f t h e h y p o t h e s i s ; and the u t i l i z a t i o n o f the t r a c e r concept (Kessner e t a l , 1973) i n p r o c e d u r e . D e t a i l s o f p r o c e d u r e and methodology a r e d e s c r i b e d i n Chapter 4.0. - 119 -CHAPTER 4.0 PROCEDURE AND METHODOLOGY In C h a p t e r 1.0, the problem o f the s t u d y i s p r e s e n t e d i n the form o f r e s e a r c h q u e s t i o n s (1.6.4) and t h r e e s e t s o f r e -s e a r c h hypotheses (1.6.5) c o n c e r n i n g the r e l a t i o n s h i p s between s e r v i c e s w h i c h have been made a v a i l a b l e t o p r e v i o u s l y i n s t i t -u t i o n a l i z e d r e t a r d e d a d u l t s b e f o r e and a f t e r t h e i n t r o d u c t i o n o f n o r m a l i z a t i o n p o l i c y , t h e i r needs, and the n a t u r e of normal-i z a t i o n c o n t e n t i n t h e s e r v i c e s . I n Ch a p t e r 2.0 a r e v i e w o f the l i t e r a t u r e i s p r e s e n t e d t o a c q u a i n t t h e r e a d e r w i t h e x i s t -i n g s t u d i e s and d i s c u s s i o n s r e l e v a n t t o t h i s problem. Chapter 3.0 d i s c u s s e s t h e c o n c e p t u a l and m e t h o d o l o g i c a l g u i d e l i n e s used i n t h e s t u d y . I n t h e p r e s e n t C h a p t e r , t h e pr o c e d u r e s and methodology used i n c o n d u c t i n g t h e s t u d y a re d e s c r i b e d . 4.1 L i m i t s o f Study The s u b j e c t i v e n a t u r e o f t h e concept o f n o r m a l i z a t i o n , n e c e s s i t a t e the s e t t i n g o f l i m i t s and r e f e r e n c e b o u n d a r i e s . The p a r t i c u l a r areas i n q u e s t i o n r e l a t e t o p o p u l a t i o n , geo-g r a p h i c boundary, p e r i o d under s t u d y , and l i m i t s o f assumptions. 4.1.1 P o p u l a t i o n The s t u d y p o p u l a t i o n c o m p r i s e s o f the f o l l o w i n g p e r s o n s : (a) A l l m e n t a l l y r e t a r d e d a d u l t s - male and female - between 19 and 40 y e a r s o f age, i n c l u s i v e l y , who had been i n s t i t u t i o n -a l i z e d a t t h e p r o v i n c i a l i n s t i t u t i o n f o r m e n t a l r e t a r d a t i o n ; Woodlands, a t New W e s t m i n s t e r . (b) A l l p e r s o n s as d e s c r i b e d - 120 -i n ( a ) , b u t who must have r e s i d e d a t Woodlands f o r a t l e a s t 12 months c o n t i n u o u s l y b e f o r e d i s c h a r g e o r placement i n t h e com-munity . The l a s t c o n t i n u o u s p e r i o d o f i n s t i t u t i o n a l i z a t i o n i s used i r r e s p e c t i v e o f t h e number of p r e v i o u s a d m i s s i o n s t o Woodlands. (c) S u b j e c t s , who, w h i l e meeting t h e s p e c i f i c a t i o n s i n (a) and (b) must o r i g i n a l l y have been a d m i t t e d t o Woodlands from the G r e a t e r Vancouver a r e a o f B r i t i s h Columbia. (d) Sub-j e c t s must a l s o have l i v e d c o n t i n u o u s l y i n t h e community f o r a p e r i o d o f 12 months a t l e a s t and have c o n t i n u e d t o l i v e o u t -s i d e o f Woodlands. S u b j e c t s who had been t r a n s f e r r e d t o E r i c M a r t i n Long Term Care F a c i l i t y i n V i c t o r i a were e x c l u d e d f o r reasons o f i n a c c e s s i b i l i t y . 4.1.2 A r e a Under Study The s t u d y a r e a i s l i m i t e d g e o g r a p h i c a l l y t o the G r e a t e r Vancouver Regions o f B r i t i s h C o lumbia. The a r e a i s made up of t h e f o l l o w i n g towns: (a) C i t y o f Vancouver, (b) N o r t h Vancouver, (c) West Vancouver, (d) Burnaby, (e) New West-m i n s t e r , ( f ) S u r r e y , (g) Richmond, (h) D e l t a , ( i ) C o q u i t l a m and ( j ) M i n i s t r y o f Human Resources a d m i n i s t r a t i v e Regions w i t h i n t h e s e towns. 4.1.3 P e r i o d s Under Study The s t u d y p e r i o d i s d i v i d e d i n t o two. The f i r s t p e r i o d i s between J a n u a r y 1, 19 69 t o December 197 3 - a f i v e y e a r d u r a t i o n - when t h e M i n i s t r y o f H e a l t h had t h e r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n and which has been d e s i g n a t e d as i n -v o l v i n g t h e m e d i c a l / c u s t o d i a l model o f s e r v i c e (Chapter 1.0, - 121 -pp. 25-28). T h i s p e r i o d has been r e g a r d e d as the pr e - n o r m a l -i z a t i o n p e r i o d . S u b j e c t s who had been d i s c h a r g e d o r p l a c e d i n t h e community d u r i n g t h e p r e - n o r m a l i z a t i o n p e r i o d have been d e s i g n a t e d as Group A i n t h i s s t u d y . The second p e r i o d i s the f i v e y e a r d u r a t i o n between J a n u a r y 1, 1975 and December 31, 1979 when t h e M i n i s t r y o f Human Resources assumed r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n under a p o l i c y o f n o r m a l i z a t i o n o f s e r v i c e s . T h i s p e r i o d i s reg a r d e d a s - i n v o l v i n g a s o c i a l model o f s e r v i c e and has been d e s i g n a t e d as the n o r m a l i z a t i o n p e r i o d (Chapter 1.0, pp. 28-35). S u b j e c t s who had been d i s c h a r g e d d u r i n g the n o r m a l i z a t i o n p e r i o d have been d e s i g n a t e d as Group B i n t h i s s t u d y . The p e r i o d between J a n u a r y 1, 1974 t o December 31, 1974 i s r e g a r d e d i n t h i s s t u d y as a t r a n s i t i o n p e r i o d when a d m i n i s -t r a t i v e adjustments were made by b o t h the M i n i s t r y o f H e a l t h , and t h e M i n i s t r y o f Human Res o u r c e s . W i t h r e g a r d t o e m p i r i c a l d a t a , o n l y t h e 12 months immed-i a t e l y f o l l o w i n g the d i s c h a r g e o f a s u b j e c t from Woodlands i n s t i t u t i o n has been c o n s i d e r e d . 4.1.4 Assumptions and L i m i t a t i o n s I n c o n d u c t i n g t h e s t u d y , i t has been assumed t h a t i n s t i t -u t i o n a l r e c o r d s a t Woodlands p r o v i d e approximate i n d i c a t i o n o f p l a c e s o f r e s i d e n c e f o r a l l s u b j e c t s a d m i t t e d t o t h e f a c i l i t y . T h e r e f o r e i t has been assumed t h a t a l l s u b j e c t s whose r e c o r d s i n d i c a t e as h a v i n g been a d m i t t e d from the G r e a t e r Vancouver - 122 -a r e a o f B r i t i s h Columbia may t h e r e f o r e be r e g a r d e d as o r i g i n a l l y r e s i d i n g i n the a r e a . C o n s e q u e n t l y , t h e s p e c i f i c town, v i l l a g e o r a r e a i s the i n d i v i d u a l ' s l o c a l community. I t i s p o s s i b l e t h a t a few a d m i s s i o n s have been made f o r s u b j e c t s who tempor-a r i l y r e s i d e d i n G r e a t e r Vancouver a r e a , o r who are i n t h e a r e a s p e c i f i c a l l y f o r a d m i s s i o n p u r p o s e s . The age l i m i t s 19 t o 40 y e a r s has been used f o r two r e a s o n s . The f i r s t i s t h a t t h i s age range i s c o n c e i v a b l y the most a c t i v e and p r o d u c t i v e p e r i o d i n l i f e when s e v e r a l demands may be made on an i n d i v i d u a l by way o f independent l i v i n g , employment and s o c i a l i z a t i o n ; and on t h e system by way o f s e r v i c e s o t h e r t h a n dependency s e r v i c e s . T h e r e f o r e , i f one i n t e n d s t o l o o k a t a range o f community s e r v i c e s , one would have t o c o n s i d e r s e v e r a l f a c t o r s which p r o v i d e independence r a t h e r than be l i m i t e d t o more o f dependency f a c t o r s o r l o n g term c a r e . The second r e a s o n r e l a t e s t o d i f f i c u l t y i n t r a c i n g a l l d e i n s t i t u t i o n a l -i z e d s u b j e c t s who may, ov e r t h e y e a r s , have e i t h e r d i e d , r e -l o c a t e d t o o t h e r p a r t s o f B r i t i s h Columbia o r have s i m p l y t r a n s -f e r r e d t o a n o t h e r p r o v i n c e . The i n c l u s i o n o f a l l a d u l t s u b j e c t s would have s e v e r e l y s t r a i n e d t h e f i n a n c i a l and p e r s o n a l r e -so u r c e s a v a i l a b l e f o r t h i s s t u d y , e s p e c i a l l y s i n c e the method-o l o g y c a l l s f o r t h e t r a c i n g o f i n d i v i d u a l s u b j e c t s and needs t o v a r i o u s community s e r v i c e s . I t i s a l s o assumed t h a t a 12 month p o s t d e i n s t i t u t i o n a l -i z a t i o n p e r i o d i s s u f f i c i e n t f o r the d e t e r m i n a t i o n o f t h e r e l a t i o n s h i p between needs and s e r v i c e s as w e l l as the c o n t e n t o f n o r m a l i z a t i o n i n s e r v i c e s . I n t h i s s t u d y , o n l y the 1 y e a r - 123 -i m m e d i a t e l y f o l l o w i n g d i s c h a r g e o f a s u b j e c t has been con-s i d e r e d . I t i s however r e c o g n i z e d t h a t i n d i v i d u a l needs may be r e - d e t e r m i n e d , i n c r e a s e d o r d e c r e a s e d over y e a r s o f com-munity l i v i n g . T h i s would have c r e a t e d d e s i g n problems s i n c e s u b j e c t s who had been d i s c h a r g e d much e a r l i e r i n the p e r i o d under s t u d y may c o n c e i v a b l y be i n v o l v e d i n a m y r a i d o f s e r v i c e s as t h e i r needs change, more than t h o s e a d u l t s who had been d i s -charged l a t e r i n the p e r i o d . A l s o , i t i s n e c e s s a r y t o have a common f a c t o r r a t h e r t h a n f a c t o r s f o r the s t u d y p o p u l a t i o n . T h i s has been a c h i e v e d t h r o u g h s p e c i f y i n g t h a t o n l y the immed-i a t e 12 months f o l l o w i n g community placement would be c o n s i d e r e d . T h i s i s t h e p e r i o d when t h e r e i s apparent o r r e a l urgency t o s t a b i l i z e community l i v i n g . 4.2 P r o c e d u r e Three s t a g e s o f p r o c e d u r e w h i c h had been c o n s i d e r e d neces-s a r y f o r d a t a c o l l e c t i o n are i d e n t i f i e d ( F i g . 1 ) . The f i r s t s t a g e i n v o l v e s the d e f i n i t i o n o f n o r m a l i z e d s e r v i c e s w i t h i n t h e g e o g r a p h i c boundary o f t h e s t u d y , as w e l l as the development o f measurement c r i t e r i a and a s c o r i n g system. The second s t a g e r e l a t e s t o t h e s p e c i f i c a t i o n o f s t u d y p o p u l a t i o n from i n s t i t u t i o n a l r e c o r d s , the s p e c i f i c a t i o n o f i n d i v i d u a l needs, and t h e g r o u p i n g o f s u b j e c t s . I n d i v i d u a l needs are l i n k e d t o community s e r v i c e s d u r i n g t h e t h i r d s t a g e . Community r e c o r d s are examined and where n e c e s s a r y , o f f i c i a l s a re i n t e r v i e w e d i n o r d e r t o s p e c i f y - 124 -STAGE I N o r m a l i z a t i o n (Community) Determine Geographic Boundary D e f i n e s e r v i c e n ormal-i z a t i o n w i t h i n s t u d y boundary - e x p l i c i t and i m p l i c i t judgement STAGE I I Needs ( I n s t i t u t i o n / W o o d l a n d s ) Determine s t u d y popu-l a t i o n from I n s t i t -u t i o n a l r e c o r d s . D e f i n e I n d i v i d u a l needs as g i v e n from i n s t i t -u t i o n a l r e c o r d s . - p r e d i s c h a r g e needs -Develop measurement c r i t e r i a and s c o r i n g system from d e f i n i t i o n o f s e r v i c e n o r m a l i z a t i o n f o r each s e r v i c e / n e e d a r e a . Group s u b j e c t s f o r p r e and p o s t n o r m a l i z a t i o n community placements and by sex, STAGE I I I COMMUNITY (Ne e d s / S e r v i c e s ) (a) L i n k i n d i v i d u a l needs t o s e r v i c e s . (b) A p p l y n o r m a l i z a t i o n c r i t e r i a t o s e r v i c e s and s c o r e . (c) I n t e r v i e w workers where n e c e s s a r y o r examine community r e c o r d s . (d) A n a l y s e l i n k a g e between N o r m a l i z a t i o n and S e r v i c e s ; and Needs and S e r v i c e s . F i g . 1 Schematic Diagram o f Study P r o c e d u r e - 125 -s e r v i c e s o r d a t a . S e r v i c e s are t h e n s c o r e d u s i n g the c r i t e r i a w h i c h had been d e v e l o p e d i n s t a g e one. 4.2.1 Stage I The p r o c e d u r e and method used i n d e t e r m i n i n g what c o u l d be r e g a r d e d as normal s e r v i c e f o r each o f t h e seven areas o f need i n G r e a t e r Vancouver a r e a have been d e s c r i b e d i n Chapter 3, s u b s e c t i o n 3.4.1 (pp. 111-115). As has been i n d i c a t e d i n C h a pter 3.0, t h e t a b l e o f random numbers was used t o o b t a i n two p r o f e s s i o n a l s i n government s e r v i c e and two p r o f e s s i o n a l s i n non-government community s e r v i c e f o r each of the seven a r e a s o f n e e d s / s e r v i c e (p. 113). I n t h i s manner, a t o t a l o f 28 p r o f e s s i o n a l s were o b t a i n e d from a l i s t o f p r o f e s s i o n a l s i n each s e r v i c e a r e a w i t h i n t h e G r e a t e r Vancouver Regions. The S t a f f D i r e c t o r y o f the M i n i s t r y o f Human Resources was used t o c o m p i l e a l i s t o f p r o f e s s i o n a l s i n Government s e r v i c e f o r each of t h e n e e d / s e r v i c e a r e a s . A second l i s t was c o m p i l e d from a p p r o p r i a t e p r o f e s s i o n a l r e g i s t e r s and from which the p r o -f e s s i o n a l s w i t h i n t h e s t u d y a r e a were o b t a i n e d . The t e l e p h o n e d i r e c t o r i e s f o r t h e s t u d y a r e a were used i n random s e l e c t i o n o f 14 c i t i z e n s . Agreement t o p a r t i c i p a t e i n s t u d y was o b t a i n e d e i t h e r by m a i l (appendix B ( i ) ) , by t e l e p h o n e , o r by p e r s o n a l c o n t a c t d u r i n g the p e r i o d when p o s t a l w o r k e r s were on s t r i k e . A p a n e l o f t h r e e judges f o r each s e r v i c e was t h e n con-s t i t u t e d t o comprise o f two p r o f e s s i o n a l s w i t h knowledge of t h e p a r t i c u l a r s e r v i c e a r e a - one from government s e r v i c e and one from t h e community o r non-government s e r v i c e - , and - 126 -one c i t i z e n . A second p a n e l o f judges was s i m i l a r l y con-s t i t u t e d t o v a l i d a t e e x p l i c i t and i m p l i c i t judgements t h a t had been made by t h e f i r s t p a n e l o f j u d g e s . E x p l i c i t judge-ment r e f e r s t o the i n p u t p r o v i d e d by the non-government worker. I m p l i c i t judgement o f c r i t e r i a r e f e r s t o t h e i n p u t p r o v i d e d by the p r o f e s s i o n a l who i s employed i n government s e r v i c e . I n o r d e r t o a v o i d an e n t i r e l y p r o f e s s i o n a l i n p u t , one c i t i z e n i n p u t was added. The c i t i z e n s i n t h e s e i n s t a n c e s were t h o s e p e r s o n s randomly o b t a i n e d from t h e t e l e p h o n e d i r e c t o r i e s b u t who n e i t h e r work i n t h e f i e l d o f men t a l r e t a r d a t i o n nor are a s s o c i a t e d w i t h someone who i s m e n t a l l y r e t a r d e d . Judges were t h e n p r o v i d e d w i t h a s i m p l i f i e d , n o n - b i a s i n g d e f i n i t i o n o f m e n t a l r e t a r d a t i o n (appendix B ( i i ) ) ; a t e x t book d e f i n i t i o n o f n o r m a l i z a t i o n as g i v e n by one o f the o r i g i n a t o r s o f t he concept ( N i r j e , 1969); and s e l e c t e d b u t e x a c t government's p o l i c y s t a t e m e n t s which have been o b t a i n e d from t h e M i n i s t r y o f Human Resources A n n u a l R e p o r t o f 1975 (appendix B ( i i ) ) . Judges were t h e n asked t o r e a d t h e s e d e f i n i t i o n s and sta t e m e n t s b e f o r e c h e c k i n g o f f (v) one o f a p a i r o f statements which d e s c r i b e n o r m a l i z e d , s u b n o r m a l i z e d , and l e a s t n o r m a l i z e d s e r v i c e s f o r each s e r v i c e a r e a (Appendix B ) . These statements have been c o n s t r u c t e d from d i f f e r e n t i d e a s r e g a r d i n g normal-i z a t i o n (Chapter 2.0) and from p u b l i s h e d government g u i d e l i n e s and r e g u l a t i o n s r e g a r d i n g t h e d e l i v e r y o f community s e r v i c e s - 127 -f o r m e n t a l l y r e t a r d e d persons."'' Three judges - two p r o f e s s i o n a l s w i t h e x p e r t i s e i n t h e p a r t i c u l a r s e r v i c e , - and one c i t i z e n , form a p a n e l f o r each s e r v i c e c a t e g o r y . A second back up p a n e l , w h i c h has been s i m i l a r l y comprised was asked t o judge t h e s t a t e m e n t s as w e l l . As i n d i c a t e d i n Chapter 3.0, agreement by one p r o f e s s i o n a l judge and t h e c i t i z e n was s u f f i c i e n t f o r t h e p a r t i c u l a r s t a t e -ment t o be used as c r i t e r i u m f o r measuring an a s p e c t of s e r v i c e . Where two o f the p r o f e s s i o n a l judges agreed and the c i t i z e n d i s -agreed w i t h them, t h e judgement o f t h e back up p a n e l was used p r o v i d e d t h e c i t i z e n i n t h a t p a n e l was i n agreement w i t h a t l e a s t , one o f t h e j u d g e s . % % S e r v i c e N SN LN P l P 2 R e s i d e n t i a l A ( i ) B ( i ) C ( i i ) 83 100 S o c i a l A ( i i ) B ( i ) C ( i ) 67 83 P s y c h o l o g i c a l A ( i i ) B ( i ) C ( i i ) 83 83 E d u c a t i o n a l A ( i ) B ( i ) C ( i i ) 67 67 V o c a t i o n a l A ( i ) B ( i i ) C ( i i ) 100 83 R e c r e a t i o n a l A ( i ) B ( i i ) C ( i ) 100 100 M e d i c a l A ( i ) B ( i ) C ( i i ) 67 83 T a b l e 1 I m p l i c i t and E x p l i c i t judgement o f n o r m a l i z a t i o n . o f s e r v i c e s and p e r c e n t a g e agreement by p r o f e s s i o n a l s 1. See I n v e n t o r y o f S e r v i c e s : S e r v i c e s f o r Handicapped c h i l d r e n and a d u l t s , 1980, and G u i d e l i n e s and R e g u l a t i o n s G o v e r n i n g t h e O p e r a t i o n o f R e s i d e n t i a l S e r v i c e s , M i n i s t r y o f Human R e s o u r c e s , 1979. - 128 -N = N o r m a l i z a t i o n SN '= Sub-normalizing LN = L e a s t N o r m a l i z i n g o r D e v i a n t P l = P e r c e n t a g e agreement f o r i m p l i c i t judgement P 2 = P e r c e n t a g e agreement f o r e x p l i c i t judgement A = N o r m a l i z i n g Statement B = S u b n o r m a l i z i n g Statement C = L e a s t N o r m a l i z i n g Statement (Appendix B ( i i i ) - B ( i x ) T a b l e 1 i n d i c a t e s the d e s i g n a t i o n o f statements f o r which t h e r e i s agreement by a t l e a s t one p r o f e s s i o n a l and a c i t i z e n . The t a b l e a l s o shows t h e p e r c e n t a g e agreement w i t h c i t i z e n p a n e l members by p r o f e s s i o n a l s employed i n government (P^) and p r o f e s s i o n a l s employed o u t s i d e o f government s e r v i c e (P2)• These p e r c e n t a g e s r e f l e c t t h e t o t a l agreement o b t a i n e d f o r a l l 28. p r o f e s s i o n a l s (14 f o r i m p l i c i t judgement and 14 f o r e x p l i c i t judgement). The f i g u r e s a re o b t a i n e d by d i v i d i n g the t o t a l number o f i m p l i c i t o r e x p l i c i t judges i n agreement on a statement by 6 and m u l t i p l y i n g by 100. Each s e r v i c e a r e a has 2 i m p l i c i t judgements and 2 e x p l i c i t judgements i n each p a n e l o f j u d g e s . There a r e t h r e e c a t e g o r i e s t o be judged r e -s u l t i n g i n a maximum o f 6 judgements f o r each p a n e l o f j u d g e s . S tatements w h i c h a r e judged as r e f l e c t i n g n o r m a l i z i n g (N) s u b n o r m a l i z i n g (SN) and l e a s t n o r m a l i z i n g (LN) judgements a r e i n d i c a t e d i n appendix B ( i i i ) - B ( i x ) by t h e a p p r o p r i a t e d e s i g -n a t i o n s c o n t a i n e d i n t a b l e 1. - 129 -These s t a t e m e n t s were t h e n used t o d e v e l o p measures o f s e r v i c e s and measurement c r i t e r i a f o r each o f t h e seven c a t e -g o r i e s o f s e r v i c e s (Appendix C ( i ) and C ( i i ) - ( v i i i ) ) . I n Appendix C ( i ) , N o r m a l i z i n g s e r v i c e i s d e f i n e d as t h e r a p e u t i c ; s u b n o r m a l i z i n g s e r v i c e i s c h a r a c t e r i z e d as m a i n t a i n i n g ; and l e a s t n o r m a l i z i n g s e r v i c e i s judged as c u s t o d i a l o r d e v i a n t . N o r m i n a l s c o r e s were t h e n a s s i g n e d as f o l l o w s : 3, N o r m a l i z i n g S e r v i c e ; 2, S u b n o r m a l i z i n g S e r v i c e ; and 1, L e a s t N o r m a l i z i n g S e r v i c e . I n o r d e r t o ensure t h a t t h e measurement i n s t r u m e n t s were c o n s i s t e n t w i t h i m p l i c i t and e x p l i c i t judgement o f c r i t e r i a , t h e s c o r i n g c r i t e r i a as w e l l as the c r i t e r i a f o r each o f the seven s e r v i c e a r e a s were r e - s u b m i t t e d t o t h e r e s p e c t i v e p a n e l o f judges f o r e x a m i n a t i o n . I n o t h e r words, a l l o f Appendix C ( i ) t o C ( v i i i ) were checked by t h e a p p r o p r i a t e p a n e l o f judges f o r c o n s i s t e n c y w i t h e s t a b l i s h e d judgements o f s e r v i c e s . Only t h e f i r s t s e t o f judges was used t o v a l i d a t e t h e i n s t r u m e n t be-cause o f t h e s t r i k e by p o s t a l w o r kers d u r i n g t h e p e r i o d o f s t u d y . 4.2.2 Stage I I A c e r t i f i c a t e o f a p p r o v a l t o u n d e r t a k e s t u d y was sought and o b t a i n e d from t h e U n i v e r s i t y o f B r i t i s h Columbia s i n c e t h e s t u d y i n v o l v e d human s u b j e c t s (Appendix A ( i ) ) . P e r m i s s i o n t o o b t a i n r e s t r o s p e c t i v e d a t a and p o s s i b l y t o i n t e r v i e w s t a f f was a l s o sought and o b t a i n e d from t h e M i n i s t r y o f Human Resources and i t s o f f i c e s and a g e n c i e s w i t h i n t h e s t u d y a r e a , - 130 -and from t h e v o l u n t e e r s e c t o r i n t h e community (Appendix A ( i i ) -A ( v i ) ; a l s o Chapter 1.0, p. 3 8 ) . The p r o c e d u r e f o r o b t a i n i n g i n d i v i d u a l needs o f former i n s t i t u t i o n a l r e s i d e n t s i n v o l v e d t h e f o l l o w i n g s t e p s : (a) S u b j e c t s who met t h e p o p u l a t i o n c r i t e r i a s p e c i f i e d i n sub-s e c t i o n 4.1.1 above were o b t a i n e d from i n s t i t u t i o n r e c o r d s a t Woodlands. (b) I n d i v i d u a l s u b j e c t r e c o r d s were then examined f o r p r e - d i s c h a r g e recommendations. T h i s has been i n t h e manner o f " D i s c h a r g e C o n f e r e n c e R e p o r t s " w h i c h had been p r e p a r e d t h r o u g h t h e c o o p e r a t i v e e f f o r t o f i n s t i t u t i o n and community c a r e g i v e r s . An i n d i v i d u a l ' s " d i s c h a r g e c o n f e r e n c e summary" note s t a t e s i n s p e c i f i c t e r m s , the type o f needs and s e r v i c e s he o r she may r e q u i r e i n t h e community. Some r e p o r t s v e n t u r e t o i d e n t i f y a v a i l a b l e and s p e c i f i c community r e s o u r c e s . These needs are th e n i d e n t i f i e d . Where i n f o r m a t i o n c o n t a i n e d i n r e -c o r d s have been i n s u f f i c i e n t , p r o f e s s i o n a l and p r o g r e s s n o t e s were r e a d t o complete t h e i n f o r m a t i o n . S u b j e c t c h a r a c t e r i s t i c s such as age, and sex as w e l l as o t h e r i n f o r m a t i o n such as l e v e l o f m e n t a l r e t a r d a t i o n , s o c i a l age, p l a c e o f r e s i d e n c e , p l a c e o f d i s c h a r g e , manner o f d i s -c h a r g e , a v a i l a b i l i t y o f p a r e n t o r g u a r d i a n , age o f d i s c h a r g e , and number o f y e a r s i n s t i t u t i o n a l i z e d were t a b u l a t e d f o r each s u b j e c t . S u b j e c t s were t h e n grouped as A o r B a c c o r d i n g t o t h e p e r i o d o f d i s c h a r g e . F o r example, Group A, the p r e n o r m a l i z -a t i o n group are s u b j e c t s who had been d i s c h a r g e d d u r i n g t h e - 131 -f i v e y e a r p e r i o d between J a n u a r y 1, 1969 and December 31, 1973. Group B, t h e n o r m a l i z a t i o n group are s u b j e c t s who had been d i s -c h a r g e d d u r i n g the f i v e y e a r p e r i o d between J a n u a r y 1, 1975 and December 31, 1979. Both groups r e p r e s e n t t h e m e d i c o - c u s t o d i a l and t h e s o c i a l models o f s e r v i c e r e s p e c t i v e l y (Chapter 1.0). 4.2.3 Stage I I I I n d i v i d u a l needs were t h e n t r a c e d t o community s e r v i c e s w h i c h had been used t o a d d r e s s them (Kessner e t a l , 1973). Community r e c o r d s were examined, and where n e c e s s a r y , r e s p o n -s i b l e s t a f f were i n t e r v i e w e d by t h e a u t h o r , o n l y t o e x p l a i n o r t o complete d a t a . C o n s i s t e n c y was m a i n t a i n e d i n t h a t m o s t l y s o c i a l w o r k ers and s o c i a l work c a s e - a i d e s were i n t e r v i e w e d . T h i s s e t o f p r o f e s s i o n a l s were deemed t o p o s s e s s the most complete s e t o f i n f o r m a t i o n r e l a t i n g t o i n d i v i d u a l s who have been r e l e a s e d from I n s t i t u t i o n s and are now l i v i n g i n t h e com-munity. P a r e n t s and/or g u a r d i a n s were c o n t a c t e d where neces-s a r y i n o r d e r t o complete an i n f o r m a t i o n . P r o p r i e t o r s o f r e s i d e n t i a l homes, p r i v a t e i n d i v i d u a l s o r v o l u n t e e r groups were c o n t a c t e d when n e c e s s a r y . I n g e n e r a l , any s o u r c e w h i c h has been i d e n t i f i e d as h a v i n g some i n f o r m a t i o n r e l a t i n g t o t h e f i r s t 12 months o f a s u b j e c t ' s d e - i n s t i t u t i o n a l i z e d community l i v i n g was c o n t a c t e d , e x c e p t i n i n s t a n c e s where t h e s u b j e c t had gone out o f p r o v i n c e , r e f u s e d t o p r o v i d e i n f o r m a t i o n , o r has been t r a n s f e r r e d t o E r i c M a r t i n Long Term Care F a c i l i t y i n Vancouver I s l a n d . - 132 -I n view o f the p o s t a l s t r i k e d u r i n g the stu d y p e r i o d , i t was n o t p o s s i b l e t o o b t a i n p e r m i s s i o n from E r i c M a r t i n F a c i l i t y i n V i c t o r i a . A l s o , f u r t h e r i n v e s t i g a t i o n n e c e s s i t a t e d c a t e g o r -i z i n g t he f a c i l i t y as an i n s t i t u t i o n . S u b j e c t s who have been t r a n s f e r r e d t o o t h e r i n s t i t u t i o n s have been e x c l u d e d from t h i s s t u d y . I n d i v i d u a l needs a r e the n l i n k e d t o s p e c i f i c community s e r v i c e s and t h e l a t t e r were s c o r e d u s i n g t h e c r i t e r i a w h i c h had been d e v e l o p e d from e x p l i c i t and i m p l i c i t judgement o f n o r m a l i z e d s e r v i c e s (Brook and A p p e l , 1973, a l s o , Appendix C ) . Furthermore needs and s e r v i c e s f o r each i n d i v i d u a l were t a b u l -a t e d a c c o r d i n g t o whether o r n o t a need has been i d e n t i f i e d and p r o v i d e d f o r , i d e n t i f i e d and n o t p r o v i d e d f o r , o r a d d i t i o n a l . F i v e c r i t e r i a , based on t h e c h a r a c t e r i s t i c s o f n o r m a l i z -a t i o n i d e n t i f i e d by W o l f e n s b e r g e r and C a l e n (1975) were used t o e v a l u a t e the n o r m a l i z i n g c o n t e n t of s e r v i c e c h a r a c t e r i s t i c s . These a r e : (a) t h e n a t u r e o f t h e s e r v i c e w h i c h have been s p e c i f i c a l l y d e t e r m i n e d f o r t h e p a r t i c u l a r s e r v i c e . F o r ex-ample whether a r e s i d e n t i a l s e r v i c e i s p r o v i d e d i n a f a m i l y home, b o a r d i n g home o r a n u r s i n g home o r whether a s o c i a l s e r v i c e i s g e n e r i c f o r t h e p o p u l a t i o n a t l a r g e , (b) t h e type o f s e r v i c e , (c) t h e name o f t h e s e r v i c e (d) t h e l o c a t i o n o f s e r v i c e and (e) t h e degree t o whi c h t h e s e r v i c e i s i n t e g r a t e d w i t h g e n e r i c community s e r v i c e s (Appendix C ( i i ) - ( v i i i ) ) . The n a t u r e and type o f s e r v i c e r e l a t e t o n o n - d e v i a n t s t r u c t u r e s , t h e name o f t h e s e r v i c e r e l a t e s t o n o n - d e v i a n t - 133 -s o c i a l i n t e r p r e t a t i o n and the l o c a t i o n and degree of i n t e g r a t i o n r e l a t e t o s o c i a l and f u n c t i o n a l i n t e g r a t i o n (Wolfensberger & Glen 1975. A l s o see Chapter 2.0, pp. 90-93). Thus, each i n d i v i d -u a l l y r e c e i v e d s e r v i c e was measured i n f i v e d i f f e r e n t ways to p r o v i d e a wider measure o f the n o r m a l i z i n g content. Only s e r -v i c e s which were a c t u a l l y r e c e i v e d e i t h e r as recommended s e r -v i c e s or as a d d i t i o n a l s e r v i c e s have been scored f o r normal-i z i n g content. 4.3 Method of Study 226 male and female a d u l t s were i d e n t i f i e d as meeting the c r i t e r i a s p e c i f i e d as p o p u l a t i o n f o r t h i s study (Subsection 4.1.1). 151 are male and 75 are female. Each category was d i v i d e d i n t o two groups A and B. Group A comprising of those persons who were d i s c h a r g e d under the medical p o l i c y of c a r e , January 1, 1969 to December 31, 1973. Group B comprises of those a d u l t s who were d i s c h a r g e d under the s o c i a l p o l i c y of c a r e , January 1, 1975 to December 31, 1979. Groups A and B r e p r e s e n t p r e - n o r m a l i z a t i o n and n o r m a l i z a t i o n groups. There are 122 male and female a d u l t s i n Group A, and 104 male and female a d u l t s i n Group B. Both groups were f u r t h e r s u b d i v i d e d by sex as f o l l o w s : Group A, male 81, female 41; Group B, male 70, female 34. These f i g u r e s c o n s t i t u t e the e n t i r e p o p u l a t i o n of the study as s p e c i f i e d under s u b s e c t i o n 4.1.1. The procedure which has been d e s c r i b e d e a r l i e r on i n t h i s chapter was then f o l l o w e d ( S e c t i o n 4.2, Table 1) i n - 134 -c o n d u c t i n g the s t u d y and i n g a t h e r i n g d a t a . The methodology i s a c o m p a r a t i v e one i n w h i c h Groups A n o r m a l i z a t i o n o f s e r v i c e s c o r e s a r e compared w i t h t h o s e o f Group B and d e t e r m i n a t i o n made r e g a r d i n g t h e s u f f i c i e n c y o f s e r v i c e s t o i d e n t i f i e d needs. Data were u n a v a i l a b l e f o r a t o t a l o f 19 s u b j e c t s as f o l l o w s : Group A male 11 o r 13.6%, Group A female 3 o r 7.3%, Group B male 3 o r 13.6%, Group B female 2 o r 5.9%. The number and p e r c e n t a g e o f t h e p o p u l a t i o n s t u d i e d a r e t h e r e f o r e as f o l l o w s : Group A male 70 o r 86.4%, Group A female 38 o r 92.7%, Group B male 67 o r 95.7%, Group B female 32 o r 94.1%. U n a v a i l a b l e d a t a were t h e r e s u l t o f m i s s i n g f i l e s , sub-j e c t s e i t h e r i n p r i s o n o r i n p s y c h i a t r i c h o s p i t a l s , g r o s s l y i n s u f f i c i e n t i n f o r m a t i o n , o r u n w i l l i n g n e s s t o p r o v i d e d a t a . 4.4 Method o f A n a l y s i s The methodology p r o v i d e s f o r t h e use o f a n a l y t i c a l frame-works i n e x p l a i n i n g o r d i s c u s s i n g e m p i r i c a l d a t a . These a n a l y -t i c a l frameworks ( K e r r , 1976a, 1976b; G i l , 1976) have been d e s c r i b e d i n C h a p t e r 3.0. E m p i r i c a l d a t a have been t r e a t e d i n p e r c e n t a g e terms wh i c h i s c o n s i d e r e d adequate f o r t h e purpose o f p o l i c y a n a l y s i s . R e s u l t s and A n a l y s i s a r e p r o v i d e d i n C h a p t e r 5.0. - 135 -CHAPTER 5.0 RESULTS AND ANALYSIS In t h i s C h a p t e r , the r e s u l t s o f the s t u d y are p r e s e n t e d . These r e s u l t s have been a n a l y s e d i n a s i m p l i f i e d form t o p e r -m i t the i n t e g r a t i o n o f e m p i r i c a l d a t a w i t h a n a l y t i c a l frame-works d i s c u s s e d i n C h a p t e r 3.0. F o l l o w i n g a d i s c u s s i o n o f the problem i n Chapter 1.0, s e v e r a l s e t s o f r e s e a r c h q u e s t i o n s were posed (p. 50) from which t h r e e s e t s o f hypotheses have been f o r m u l a t e d . The f o l l o w i n g a n a l y s i s p r o v i d e e m p i r i c a l r e s u l t s and then proceeds t o r e l a t e same t o a n a l y t i c a l frameworks (Chapter 3.0) i n d i s -c u s s i n g r e l a t i o n s h i p s t o q u e s t i o n s and h y p o t h e s e s . 5.1 E m p i r i c a l R e s u l t s I n T a b l e 2, the d i s t r i b u t i o n o f s e v e r a l items and t h e i r b e a r i n g s on each o f t h e f o u r subgroups are p r e s e n t e d . These items have been p r e s e n t e d i n p e r c e n t a g e s o f the t o t a l p o p u l -a t i o n f o r each subgroup (N) w h i c h i s the sum o f the number of s u b j e c t s f o r which d a t a were a v a i l a b l e (n) and those whose community s e r v i c e s d a t a were u n a v a i l a b l e (N-n). However, more than 86% o f the d a t a f o r each subgroup p o p u l a t i o n had complete and a v a i l a b l e d a t a . On the averag e , 74% o f Group B s u b j e c t s had r e l a t i v e s as g u a r d i a n s as compared t o 63% f o r Group A s u b j e c t s . More f e m a l e s , 27.5% Group A, and 17.7% Group B, than males 11.1% Group A and 8.6% Group B had been wards o f s t a t e . T h i s - 136 -MALE FEMALE Group A Group B Group A Group B N = 81 N = 70 N = 41 N = 34 ITEM No. o. "8 No. o. "o . No. % No. Q, "o * Available Data (n) 70 86. 4 67 95. 7 38 92. 7 32 94. 1 Unavailable Data (N-n) 11 13. 6 3 4. 3 3 7. 3 2 5. 9 Relative as Guardian 58 71. 6 54 77. 1 25 61. 0 23 67. 6 Wards of State 9 11. 1 6 8. 6 11 27. 5 6 17. 7 ** Self Dis-charged 9 11. 1 6 8. 6 5 12. 5 5 14. 7 *** Other 5 6. 2 4 5. 7 - - — — Discharged to own Cornmunity 12 14. 8 10 14. 2 3 7. 3 11 32. 4 Discharged to other Commun-i t y 69 85. 2 60 85. 8 38 92. 7 23 67. 6 Average age at Discharge 26.0 — 25.4 _ 26.5 25.8 Average No. Yrs. at Woodlands 12 11.4 11.8 10.4 Average Social Age 10.1 _ 9.8 12.5 11.1 _ Table 2 D i s t r i b u t i o n of Items as percentages of sub-group  populations: Male and Female. * Missing f i l e s , subject i n prison, p s y c h i a t r i c hospital or unwilling to provide information; or p a r t i a l information available. ** Records do not indicate any form of guardianship. *** I n s t i t u t i o n a l record indicate that the i n d i v i d u a l has been discharged to the community or town from which he or she had been i n i t i a l l y admitted. Group A: Prenormalization Group Jan. 1, 1969 - Dec. 31, 1973. Group B: Normalization Group Jan. 1, 1975 - Dec. 31, 1979. - 137 -t r a n s l a t e s t o a t o t a l o f 32 a d u l t s whose r e c o r d s i n d i c a t e as wards o f s t a t e . No immediate e x p l a n a t i o n c o u l d be found f o r the s l i g h t l y h i g h e r p e r c e n t a g e o f females who have been wards o f s t a t e i n b o t h Groups. 11.4% o f Group A s u b j e c t s and 10.5% o f Group B s u b j e c t s d i s c h a r g e d themselves from the i n s t i t u t i o n . T h i s r e p r e s e n t s 11.1% male and 12.5% female i n Group A; and 8.6% male and 14.7% female i n Group B. O v e r a l l , group d i f f e r e n c e i s not s i g n i f i c a n t . However, t h e r e a re s l i g h t l y more " s e l f - d i s c h a r g e d " a d u l t s i n Group B, e s p e c i a l l y f o r t h e female sub group. 6.0% o f a l l males (6.2% Group A, 5.7% Group B) had no i n -d i c a t i o n o f g u a r d i a n s h i p . A l l o f the female s u b j e c t s i n b o t h groups had i n d i c a t i o n o f p a r t i c u l a r forms o f g u a r d i a n s h i p i n t h e i r i n s t i t u t i o n a l r e c o r d s . A g a i n , no s p e c i f i c r e a s o n c o u l d be advanced t o e x p l a i n t h i s d i f f e r e n c e between male and female s u b j e c t s e x c e p t t o su g g e s t t h a t perhaps f a m i l i e s o r r e l a t i v e s had been more concerned f o r t h e i r female r e l a t i v e s t h a n f o r t h e i r male r e l a t i v e s . T h e r e f o r e , i t i s more l i k e l y t o i n d i c -a t e t h i s c o n c e r n by a c c e p t i n g g u a r d i a n s h i p a t the time of a d m i s s i o n o r s u b s e q u e n t l y a f t e r w a r d s . A p r o p o r t i o n a l l y h i g h e r p e r c e n t a g e o f s u b j e c t s i n b o t h groups were d i s c h a r g e d t o communities o t h e r t h a n the ones from w h i c h t h e y had been i n i t i a l l y a d m i t t e d t o t h e i n s t i t u t i o n . T h i s r e p r e s e n t s 87.7% o f p r e - n o r m a l i z a t i o n Group A and 79.8% of n o r m a l i z a t i o n Group B f o r a l l s e x e s . One may suggest t h a t t h e d i f f e r e n c e o f 7.9% between t h e two groups has been the - 138 -V r e s u l t of increased awareness by guardians and r e l a t i v e s of the necessity to p a r t i c i p a t e a c t i v e l y i n the planning of community placement of t h e i r wards. This awareness may have been helped by the a c t i v i t i e s of the volunteer and advocate groups through continual media presentations and challenges to government pol i c y for mentally retarded persons. The tabulation of these results according to subgroups (Table 2) provide some int e r e s t i n g findings. F i r s t l y , there i s no difference i n the percentage of male subjects for each subgroup who had been discharged to communities other than t h e i r own. This represents 85.2% of a l l males i n Group A and 85.8% of a l l males i n Group B. However, a proportionally higher percentage i s found among female subgroups (Table 2). 92.7% of females i n Group A as opposed to 67.6% of females i n Group B had been discharged to communities other than the ones from which they had been i n i t i a l l y admitted to Woodlands. A proportionally higher percentage of females, 32.4% discharged between January 1, 197 5 and December 31, 1979 were returned to th e i r home communities from Woodlands i n contrast to 7.3% of females i n Group A. An explanation for t h i s difference may be suggested as an increase i n family concern for t h e i r retarded female members after the " s o c i a l i z a t i o n " of care for the mentally retarded i n 1974. The custodial model was being challenged and the "pro tection" offered by the i n s t i t u t i o n was no longer guaranteed. Therefore, the concern for female r e l a t i v e s which had been indicated e a r l i e r , and the supposition that females may not - 139 -be as w e l l p r e p a r e d t o meet s o c i a l c h a l l e n g e s i n the community may have t i l t e d t he b a l a n c e i n f a v o u r o f female s u b j e c t s a t t h e t i m e . A second r e a s o n may be the r e s u l t o f the a c t i v i t i e s of the Community L i v i n g Board (Chapter 1.0, pp. 40-41) w h i c h was e s t a b l i s h e d i n 1978 t o h e l p p l a c e i n s t i t u t i o n r e s i d e n t s from Woodlands t o t h e community. The l a t t e r e x p l a n a t i o n i s not as c o m p e l l i n g as the f i r s t i n t h a t b o t h male and female p e r s o n s were i n v o l v e d i n t h e a c t i v i t i e s o f t h e CLB. However, more f a m i l i e s may have i n d i c a t e d p r e f e r e n c e i n h a v i n g t h e i r d aughters o r female r e l a t i v e s c l o s e r t o home. The average age a t d i s c h a r g e f o r Group A i s 26.3 y e a r s (26.0 y e a r s f o r males and 26.5 y e a r s f o r f e m a l e s ) . The average age a t d i s c h a r g e f o r Group B i s 25.6 y e a r s (25.4 y e a r s f o r males and 25.8 y e a r s f o r f e m a l e s ) . Group A s u b j e c t s were i n s t i t u t i o n -a l i z e d f o r one y e a r l o n g e r t h a n Group B s u b j e c t s (11.9 Group A, 10.9 Group B ) . The average number o f y e a r s o f i n s t i t u t i o n a l i z -a t i o n f o r male and female subgroups are shown i n T a b l e 2. Over-a l l , t he d i f f e r e n c e s i n average age a t d i s c h a r g e and average number o f y e a r s i n Woodlands i s not c o n s i d e r e d s i g n i f i c a n t t o an a p p r e c i a b l e degree. S i m i l a r l y , the d i f f e r e n c e i n average s o c i a l age - 11.3, Group A; 10.5, Group B - i s not c o n s i d e r e d s i g n i f i c a n t . However female subgroups had h i g h e r average s o c i a l ages, 12.5 Group A and 11.1 Group B, th a n male subgroups, 10.1 Group A and 9.8 Group B. 5.1.1 Needs and S e r v i c e s A t o t a l o f 214 i n d i v i d u a l needs were i d e n t i f i e d f o r Group - 140 -A s u b j e c t s (142 male, 72 female) . 183 i n d i v i d u a l needs were i d e n t i f i e d f o r Group B (131 male, 52 female) (Table 3) . On the a v e r a g e , 78.5% o f t o t a l i d e n t i f i e d needs f o r Group A, and 79.8% f o r Group B r e c e i v e d s e r v i c e s i n t h e community. The f i g u r e s by sex are 80.3% male Group A, 80.9% male Group B, 75% female Group A, 76.9% female Group B. S p e c i f i c a l l y , 80.5% of i d e n t i f i e d needs o f a l l male s u b j e c t s were p r o v i d e d w i t h s e r v i c e s . The c o r r e s p o n d i n g f i g u r e f o r females i s 75.8%. S l i g h t l y l e s s t h a n 20% o f i d e n t i f i e d needs o f males and s l i g h t l y l e s s t h a n 26% o f i d e n t i f i e d needs o f fe m a l e s were n o t p r o v i d e d w i t h community s e r v i c e s ( T able 3 ) . A d d i t i o n a l s e r v i c e s w h i c h were p r o v i d e d f o r needs w h i c h had n o t been i d e n t i f i e d a t t h e time of d i s c h a r g e were c a l c u l -a t e d as p e r c e n t a g e s o f t o t a l needs f o r each sub group (Table 3 ) . T h i s t r a n s l a t e s i n t o 89.4% of a d d i t i o n a l s e r v i c e s f o r Male Group A; 106.9% f o r Male Group B; 80.5% f o r female Group A; and 103.8% f o r female Group B. Thus, t h e t o t a l number o f a d d i t i o n a l s e r v i c e s f o r t h e n o r m a l i z a t i o n Group B exceeds t h e t o t a l number of i d e n t i f i e d needs a t the time o f d i s c h a r g e . A l s o , a d d i t i o n a l number o f s e r v i c e s p r o v i d e d f o r t h e p r e -n o r m a l i z a t i o n Group A are more t h a n 84% o f t h e number o f i d e n t i f i e d needs a t time o f d i s c h a r g e o r community placement. These f i n d i n g s a re c o n s i s t e n t w i t h t h e h y p o t h e s i s t h a t p a s t and p r e s e n t s e r v i c e s do not a d e q u a t e l y address the needs of r e t a r d e d a d u l t s l i v i n g i n t h e community (Chapter 1.0, p. 51). These f i n d i n g s may be e x p l a i n e d i n the f o l l o w i n g ways: - 141 -MALE FEMALE Group A Group B Group A Group B Need/Service Category No. % No. % No. % No. % * Total No. of Id e n t i f i e d In-d i v i d u a l Needs 142 100 131 100 72 100 52 100 * No. of Identi-f i e d needs for which services were received. * No. of i d e n t i -f i e d needs for which services were not received. ** No. of addi-t i o n a l services ( i . e . not i d e n t i -f i e d but which were received). 127 89.4 140 106.9 58 80.5 54 103.8 Table 3: Nos. of Services received and not received as percentages  of i d e n t i f i e d needs/services for each sub group. * Include r e s i d e n t i a l needs/services. ** Excludes r e s i d e n t i a l needs/services. 114 80.3 106 80.9 54 75.0 40 76.9 28 19.7 25 19.1 18 25.0 12 23.1 - 142 -(a) I t i s p o s s i b l e t h a t t h e d e t e r m i n a t i o n o f i n d i v i d u a l needs w i t h i n t h e i n s t i t u t i o n p r i o r t o community placement i s not s u f f i c i e n t l y r e l a t e d t o a c t u a l community s e r v i c e s and needs. I t may be t h a t such d e t e r m i n a t i o n s a re made w i t h e x i s t i n g community s e r v i c e s i n mind. A l s o , the c o m p o s i t i o n o f i n s t i t -u t i o n a l d i s c h a r g e c o n f e r e n c e s may have been dominated by p r o -f e s s i o n a l s whose e x p e r i e n c e s have been l a r g e l y i n c u s t o d i a l c a r e and " g a t e - k e e p i n g . " Indeed such appears t o be the case on f u r t h e r e x a m i n a t i o n o f d i s c h a r g e c o n f e r e n c e r e c o r d s . (b) I t i s p o s s i b l e t h a t s o c i a l and b u r e a u c r a t i c mechanisms a l r e a d y i n p l a c e i n the community a r e n o t f l e x i b l e enough t o p e r m i t adjustment t o needs and s e r v i c e s . Thus i n d i v i d u a l c a r e g i v e r s o r s o c i a l w o r k e r s i n t h e community a r e l e f t t o push f o r a d d i -t i o n a l s e r v i c e s w i t h i n t h e f i r s t y e a r o f community placements as t h e r e a l needs o f r e t a r d e d i n d i v i d u a l s become a p p a r e n t , (c) The i n c r e a s e i n awareness w h i c h has been made p o s s i b l e by advocate groups t o the needs o f r e t a r d e d p e r s o n s as w e l l as the s o c i a l d e t e r m i n a t i o n o f r e t a r d a t i o n problems under t h e p o l i c y o f n o r m a l i z a t i o n may have been r e s p o n s i b l e f o r the v e r y h i g h number o f a d d i t i o n a l s e r v i c e s w h i c h were p r o v i d e d f o r Group B a d u l t s . 5.1.2 D i s t r i b u t i o n o f S u b j e c t s i n Community T a b l e 4 shows the d i s t r i b u t i o n o f s t u d y p o p u l a t i o n t o community r e s i d e n t i a l f a c i l i t i e s . The numbers have been ex-p r e s s e d as p e r c e n t a g e s o f t o t a l p o p u l a t i o n . 67.2% o f a l l a d u l t s i n Group A (66.7% male, 68.3% female) - 143 -MALE FEMALE Group A Group B Group A Group B . , _ . N = 81 Residential F a c i l i t y No. % N = 70 N = 41 N = 34 No. g . • • "5 No. •Q , - : ; No. • Q . "8 Boarding Home 54 66.7 38 54.3 28 68.3 13 38.2 Family Home 9 11.1 6 8.6 4 9.8 4 11.8 Group Home 3 4.3 - - 3 8.9 Extended Care 4 5.7 - - 5 14.7 Long Term Care 1 1.4 - -* Own Home/ Apartment 9 11.1 3 4.3 4 9.8 4 11.8 Intermedicate Care 1 1.4 - - 1 2.9 Nursing Home 1 1.4 - -Foster Home 1 1.4 - - 1 1.4 Psychiatric Hospital 2 2.9 1 2.9 Prison 1 1.4 - - 1 2.4 - -Out of Province 2 2.5 1 1.4 1 1.4 2 5.9 ** Family Care Home 5 7.1 - — 1 2.9 * * * Treatment & Training Home 3 4.3 - - - -** ** Other 5 6.2 2 2.9 2 4.9 - -Total 81 100 70 100 41 100 34 100 Table 4 D i s t r i b u t i o n of Subjects to Residential F a c i l i t i e s as percentage of sub-group populat: ions: Male and Female. * Assumes r e s p o n s i b i l i t y for s e l f or l i v i n g i n own rented apartment or home. ** Live with another family by arrangement with an intermediary agency. *** Mostly farming and vocational t r a i n i n g centres which provide r e s i d e n t i a l l i v i n g . **** Unable to determine status, or trace, movement or c l i e n t ' s / guardian's r e f u s a l to provide information. - 144 -were d i s c h a r g e d t o b o a r d i n g homes. 49.0% o f a l l a d u l t s i n Group B (54.3% male, 38.2% female) were d i s c h a r g e d t o b o a r d i n g homes. O v e r a l l , t h e r e were l e s s number and p e r c e n t a g e o f a d u l t s i n Group B d i s c h a r g e d t o b o a r d i n g homes th a n was p r e v i o u s l y d i s -c h arged t o t h i s t y pe o f f a c i l i t y from Group A. The d i f f e r e n c e i s 12.4% i n f a v o u r o f males i n Group A and 30.1% i n f a v o u r o f females i n Group A. However, t h e r e were more a l t e r n a t i v e com-munity r e s i d e n c e s f o r Group B t h a n f o r Group A. T a b l e 4 a l s o shows t h a t d u r i n g t h e n o r m a l i z a t i o n p e r i o d , Group B s u b j e c t s were a d m i t t e d t o b o a r d i n g homes as w e l l as t o Group homes, extended c a r e f a c i l i t i e s , l o n g term c a r e f a c i l i t i e s , i n t e r m e d -i a t e c a r e homes and n u r s i n g homes. A l s o , i n t e r m e d i a r y a g e n c i e s such as the Community L i v i n g Board i n t r o d u c e d the i d e a o f f a m i l y c a r e homes as w e l l as Treatment and T r a i n i n g f a c i l i t i e s d u r i n g t h e n o r m a l i z a t i o n p e r i o d . None o f t h e p r e - n o r m a l i z a t i o n sub-j e c t s were a d m i t t e d t o any o f t h e s e new community homes. The q u e s t i o n i s t h e r e f o r e whether t h e s e a d d i t i o n a l community f a c i l -i t i e s are n o r m a l i z i n g i n t h e s e r v i c e s t h e y p r o v i d e . T h i s f a c -t o r w i l l t h e r e f o r e be r e f l e c t e d i n t h e n o r m a l i z a t i o n s c o r e s f o r r e s i d e n t i a l s e r v i c e s f o r Group B. 10.6% o f p r e - n o r m a l i z a t i o n s u b j e c t s (11.1% male, 9.8% female) l i v e d i n t h e i r own homes o r apartment d u r i n g t h e i r f i r s t y e a r o f community l i v i n g . The c o r r e s p o n d i n g f i g u r e f o r the n o r a m l i z a t i o n group i s 6.7% (4.3% male, 11.8% f e m a l e ) . However, a l l a d m i s s i o n s t o p s y c h i a t r i c h o s p i t a l s (2.9% male, 2.9% female) were from Group B as w e l l as a l l d i s c h a r g e s t o t r e a t m e n t and t r a i n i n g homes (4.3% Male Group B ) . 1.8% o f - 145 -a d u l t s i n Group A (1.4 male, 2.4 female) were i n p r i s o n . Seven pe r s o n s o r 5.7% o f Group A and two persons o r 1.9% o f Group B c o u l d n o t be accounted f o r . The s i g n i f i c a n c e o f t a b l e 4 i s two f o l d : (a) A h i g h p r o -p o r t i o n o f a l l d e i n s t i t u t i o n a l i z e d s u b j e c t s were s e n t t o bo a r d -i n g homes i n t h e community. 96.4% o f th e s e b o a r d i n g homes are p r i v a t e l y owned and o p e r a t e d f o r commercial p u r p o s e s . 92.1% o f a l l b o a r d i n g homes a r e b e i n g s u p e r v i s e d by t h e M i n i s t r y o f H e a l t h v i a t h e M e n t a l H e a l t h C e n t r e s . N e a r l y a l l o f t h e b o a r d i n g home d a t a and i n f o r m a t i o n were o b t a i n e d from s o c i a l w o r k ers and s o c i a l work case a i d s i n M e n t a l H e a l t h C e n t r e s . T h e r e f o r e , i t i s r e a s o n a b l e t o c o n c l u d e t h a t t h e r e a re l i n k a g e s w i t h the m e d i c a l model o f r e s i d e n t i a l s e r v i c e s a t l e a s t w i t h i n t h e framework o f b o a r d i n g homes o p e r a t i o n . T h i s f a c t o r w i l l l a t e r be a n a l y s e d , (b) New o r a l t e r n a t i v e community r e s i d e n t i a l s e r v i c e s were de v e l o p e d d u r i n g t h e n o r m a l i z a t i o n p e r i o d . Some o f th e s e a l t e r -n a t i v e s have been i n p l a c e b e f o r e t h e change o f p o l i c y - n u r s i n g homes, extended c a r e f a c i l i t i e s , - and some o f them are new such as f a m i l y c a r e homes; i n t e r m e d i a t e c a r e f a c i l i t i e s and t r e a t m e n t and t r a i n i n g homes. The key q u e s t i o n i s whether t h e s e new com-munity r e s i d e n t i a l f a c i l i t i e s a r e e s s e n t i a l l y d i f f e r e n t from b o a r d i n g homes. (c) Only a s m a l l p e r c e n t a g e o f d i s c h a r g e d a d u l t s l i v e w i t h t h e i r f a m i l i e s (11.1% male Group A, 8.6% male Group B; 9.8% female Group A and 11.8% female Group B ) . These p e r c e n t a g e s do n o t r e f l e c t r e a l group d i f f e r e n c e s . Thus, i t may be s a i d t h a t t h e t r e n d o f d e i n s t i t u t i o n a l i z a t i o n i s n o t towards r e t u r n i n g m e n t a l l y r e t a r d e d a d u l t s t o t h e i r f a m i l y homes. - 146 -5.1.3 D i s t r i b u t i o n of Community Based Services Table 5 and Table 6 provide further analysis of Table 3. Residential service has been excluded i n the analysis i n tables 5 and 6 since i t i s a common factor for a l l community residents. Table 5 shows the d i s t r i b u t i o n of absolute numbers of services which although were i d e n t i f i e d at time of discharge, but nevertheless, were not received by male subjects i n Group A and Group B. Table 6 shows the d i s t r i b u t i o n of services which were not i d e n t i f i e d at the time of discharge, but were l a t e r provided as additional services to meet the community needs of Groups A and B males. Tables 7 and 8 are the equivalent tables for females i n Groups A and B. The highest number of unmet but i d e n t i f i e d community services i s within vocational services (4 6.4% male Group A, and 44.0% male Group B). The next areas of unmet services are psychological services for male i n Group A (28.6%) and Recreational Services for male i n Group B (24.0%). These are followed by Recreation and Educational services for Group A (10.7%); and psychological and educational services for Group B males (12.0%). Overall, there are unmet needs i n a l l cate-gories of services excepting r e s i d e n t i a l and s o c i a l services for a l l males. This s i t u a t i o n appears to have been reversed i n Table 6. - 147 -MALE Group A Group B No. o f No. o f * S e r v i c e / N e e d S e r v i c e s o . "5 S e r v i c e s Q . "O V o c a t i o n a l 13 46.4 11 44.0 P s y c h o l o g i c a l 8 28.6 3 12.0 R e c r e a t i o n a l 3 10.7 6 24.0 E d u c a t i o n a l 3 10.7 3 12.0 M e d i c a l 1 3.6 2 8.0 S o c i a l - - - -T o t a l 28 100 25 100 T a b l e 5 No. and . p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e s not r e c e i v e d , b u t i d e n t i f i e d a t time o f d i s c h a r g e : M a l e: Group A and Group B * E x c l u d i n g r e s i d e n t i a l s e r v i c e s . MALE Group A Group B No. o f No. o f *S e r v i c e / N e e d S e r v i c e s Q . "o S e r v i c e s % S o c i a l 44 34.6 49 35.0 M e d i c a l 32 25.2 45 32.1 R e c r e a t i o n a l 27 21.3 27 19.2 V o c a t i o n a l 18 14.2 11 7.9 P s y c h o l o g i c a l 6 4.7 4 2.9 E d u c a t i o n a l - - 4 2.9 T o t a l 127 100 140 100 T a b l e 6 No. and p e r c e n t a g e d i s t r i b u t i o n of s e r v i c e s r e c e i v e d b u t n o t i d e n t i f i e d a t time o f d i s c h a r g e . Male: Group A and Group B. * E x c l u d i n g r e s i d e n t i a l s e r v i c e s . - 148 -FEMALE * S e r v i c e s / N e e d s Group A No. o f S e r v i c e s Group B No. o f S e r v i c e s V o c a t i o n a l 8 44.4 5 41.7 P s y c h o l o g i c a l 4 22.2 1 8.3 R e c r e a t i o n a l 4 22.2 3 25.0 E d u c a t i o n a l 1 5.6 1 8.3 M e d i c a l 1 5.6 2 16.7 SOCial - -T o t a l 18 100 12 ••••••••••• 100 T a b l e 7 No. and p e r c e n t d i s t r i b u t i o n o f s e r v i c e s n o t r e c e i v e d  b u t i d e n t i f i e d a t time o f d i s c h a r g e . Female; : Group  A and Group B * E x l u d i n g R e s i d e n t i a l S e r v i c e s FEMALE Group A Group B No. o f No. o f *S e r v i c e s / N e e d s S e r v i c e s O. "5 S e r v i c e s "6 S o c i a l 26 44.8 27 50.0 M e d i c a l 10 17.2 12 22.2 R e c r e a t i o n a l 14 24.2 8 14.8 V o c a t i o n a l 1 1.7 1 1.9 P s y c h o l o g i c a l 7 12.1 2 3.7 E d u c a t i o n a l - - 4 7.4 T o t a l 58 100 54 100 T a b l e 8 No. and p e r c e n t d i s t r i b u t i o n of s e r v i c e s r e c e i v e d b u t n o t i d e n t i f i e d a t t i m e o f d i s c h a r g e . Female; Group A and Group B. * E x c l u d i n g R e s i d e n t i a l S e r v i c e s - 149 -The largest number of additional services which were provided to meet in d i v i d u a l needs but which had not been i d e n t i f i e d at time of discharge i s i n the area of Social Services, (34.6% males Group A, and 35.0% males Group B). This i s followed by Medical Services (25.2% males Group A, 32.1% males Group B); and Recreational Services (21.3% males Group A, and 19.2% males Group B). More of vocational services were provided addition-a l l y for males i n Group A than for males i n Group B although vocational services stradle the apex of i d e n t i f i e d but unmet needs of males (Table 5). Also no additional educational service was provided for males i n Group A. With regard to Tables 5 and 6, one may suggest that s o c i a l service needs i n general terms are provided as of routine once an i n d i v i d u a l has been d e i n s t i t u t i o n a l i z e d . This need i s more re a l especially i n the event that ah adult would have to either obtain gainful employment, or be provided for by the state. I t i s also possible that S o c i a l Workers are more apt to involve d e i n s t i t u t i o n a l i z e d adults i n s p e c i f i c s o c i a l services under the G.A.I.N. l e g i s l a t i o n (Chapter 1.0, p. 33, note 19). These factors may p a r t i a l l y explain why a l l of the i d e n t i f i e d s o c i a l service needs were met and additional s o c i a l services provided. So c i a l workers perhaps tend to i d e n t i f y more s o c i a l needs than other professionals. A surprise finding i s the r e l a t i v e l y high percentage of medical services (25.2% Group A, 32.1% Group B) which were received as additional services. S p e c i f i c a l l y , the higher percentage of additional medical needs for the normalization - 150 -Group B was not expected. One might have suggested that under the s o c i a l service model of p o l i c y , that the need for medical services would be reduced. The implication may be that there has been increasing dependency on medically related services once subjects have been discharged from the i n s t i t u t i o n where a l l of t h e i r medical needs have been provided as part of o v e r a l l care. I t i s equally possible that subjects and t h e i r guardians have become more conscious of a variety of medical services once subjects become resident i n the community. Some workers report lack of r e s p o n s i b i l i t y i n doing management and use by retarded adults under free choice. No additional educational service was provided for males i n Group A, but additional 2.9% of educational services were provided for males i n Group B. Overall, except for s l i g h t increases i n the number of psychological services which were not received by males i n Group A, and a s l i g h t increase of unmet recreational services for Group B males, the general trend i n the provision of ser-vices for both groups of males i s about the same. This finding e s s e n t i a l l y substantiates the hypothesis that there i s no difference i n services for the pre and post normalization groups. A general comment would be that caregivers i n the community have perhaps been generally s e l e c t i v e i n t h e i r deter-mination of community needs and services. In general, i t would appear that there i s lack of coordination i n i d e n t i f y i n g and following up on i n d i v i d u a l needs and appropriate services with which to meet the needs. - 151 -T a b l e 7 and t a b l e 8 r e s p e c t i v e l y r e p r e s e n t i d e n t i f i e d b u t unmet s e r v i c e s and a d d i t i o n a l s e r v i c e s f o r females i n the p r e -n o r m a l i z a t i o n and n o r m a l i z a t i o n groups. The f i n d i n g s f o r t h e female subgroups are i d e n t i c a l t o t h o s e o f the male subgroups. V o c a t i o n a l s e r v i c e s c o n s t i t u t e a l a r g e p r o p o r t i o n o f i d e n t i f i e d b u t unmet s e r v i c e needs (44.4 Group A, 41.7% Group B) . Next a r e p s y c h o l o g i c a l s e r v i c e s f o r Group A (22.2%) and R e c r e a t i o n a l s e r v i c e s f o r Group B ( 2 5 . 0 % ) . As w i t h t h e male subgroups, a l l s o c i a l s e r v i c e s w h i c h were i d e n t i f i e d were met. The f i g u r e s a g a i n , seem t o be r e v e r s e d f o r a d d i t i o n a l s e r v i c e s w h i c h were p r o v i d e d (Table 8 ) . As w i t h the male sub-gro u p s , more o f a d d i t i o n a l s o c i a l s e r v i c e s were p r o v i d e d (44.8 Group A, 50.0% Group B ) . However, u n l i k e w i t h t h e male sub-groups more o f r e c r e a t i o n a l s e r v i c e s were n e x t p r o v i d e d f o r female Group A ( 2 4 . 2 % ) , b u t more o f a d d i t i o n a l m e d i c a l s e r v i c e s were p r o v i d e d f o r female GroupB ( 2 2 . 2 % ) . There i s no ready e x p l a n a t i o n f o r t h e i n c r e a s e i n r e c r e a -t i o n a l s e r v i c e s f o r females i n Group A and i n m e d i c a l s e r v i c e s f o r females i n Group B. However, one may-observe t h a t v o l u n -t a r y o r g a n i z a t i o n s were i n v o l v e d more w i t h r e c r e a t i o n a l s e r -v i c e s d u r i n g t h e e a r l i e r p e r i o d s o f t h e i r e x i s t e n c e , t h a t i s i n t h e 1960's. I t i s p o s s i b l e t h a t more females i n Group A were i n v o l v e d i n v o l u n t e e r r e c r e a t i o n a l programs i n t h e l a t e 60's and e a r l y 70's b e f o r e t h e advent o f c u r r e n t system o f g e n e r i c community s e r v i c e s . - 152 -The i n c r e a s e i n a d d i t i o n a l m e d i c a l s e r v i c e s f o r b o t h male and female groups poses some c o n c e r n . I t has been e x p e c t e d t h a t t h e r e would be a d e c r e a s e i n m e d i c a l s e r v i c e s under t h e n o r m a l i z e d s o c i a l model o f c a r e . T h i s e x p e c t a t i o n has not been s u b s t a n t i a t e d . E i t h e r t h a t more m e d i c a l needs o f r e -t a r d e d a d u l t s a r e b e i n g i d e n t i f i e d o u t s i d e o f t h e i n s t i t u t i o n , o r t h a t some d i f f i c u l t s o c i a l problems a r e b e i n g r e f e r r e d f o r m e d i c a l s o l u t i o n , and o r co n t a i n m e n t . There i s a need t o l o o k a t t h e p a t t e r n o f m e d i c a l s e r v i c e s u t i l i z a t i o n by d e - i n s t i t u t i o n -a l i z e d r e t a r d e d a d u l t s . 5.1.4 I n t e l l e c t u a l L e v e l and S o c i a l Age Ta b l e 9 shows the d i s t r i b u t i o n o f L e v e l s o f I n t e l l i g e n c e f o r P r e - n o r m a l i z a t i o n Group A and N o r m a l i z a t i o n Group B. The t a b u l a t i o n r e f l e c t s r e c o r d e d i n t e l l e c t u a l l e v e l s a t t h e time of d i s c h a r g e from t h e I n s t i t u t i o n . 38.6% o f t h e s u b j e c t s were a s s e s s e d as h a v i n g normal, m i l d o r moderate i n t e l l i g e n c e , and 61.4% as p o s s e s s i n g s e v e r e o r p r o f o u n d l e v e l s o f m e n t a l r e t a r d a t i o n (Chapter 2.0, pp. 61-62). Of t h e f i r s t c a t e g o r y , 4.8% were a s s e s s e d as h a v i n g normal i n t e l l i g e n c e , t h a t i s an i n t e l l i g e n c e q u o t i e n t o f 70 p o i n t s o r above. An e x a m i n a t i o n o f t h e i n s t i t u t i o n a l r e c o r d s o f the 10 a d u l t s who were judged as b e i n g "normal" d u r i n g d i s c h a r g e from Woodlands i n d i c a t e a v a r i e t y o f i n i t i a l i n d i v i d u a l p r o b -lems. These problems range from s e x u a l e x h i b i t i o n i s m , homo-s e x u a l i t y and s l o w c h i l d h o o d m e n t a l development t o abandonment a t b i r t h . I n o t h e r words, some o f t h e s e problems were r e g a r d e d *I.Q. GROUP INTELLE( Normal > 70 No. % ZTUAL LEVEL: M i l d 55 - 69 No. % MALE AND FI Moderate 36 - 51 No. % ]MALE Severe 20 - 35 No. % P r o f o u n d < 20 No. % T o t a l No. % P r e - N o r m a l i z a t i o n A 4 3.7 16 14.8 24 22.2 35 32.4 29 26.9 108 100 N o r m a l i z a t i o n B 6 6.1 12 12.1 18 18.1 36 36.4 27 27.3 99 100 TOTAL 10 4.8 28 13.5 42 20.3 71 34.3 56 27.1 207 100 * I n t e l l e c t u a l Q u o t i e n t T a b l e 9: No. and P e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d i n t e l l e c t u a l l e v e l f o r Male and Female S u b j e c t s : Group A and Group B. - 154 -as deviancy and were consequently categorized under mental retardation, perhaps due to inadequate resource or mechanism for dealing with the problems. I t Is rather inconceivable in today's world that homosexuality w i l l be c l a s s i f i e d under mental retardation. I t has been expected that more of retarded adults within the mild and moderate leve l s of retardation (I.Q. 36-69) would constitute the majority of d e - i n s t i t u t i o n a l i z e d adults. This expectation had been based on the conception that less severely retarded adults would more ably cope and adjust i n the commun-i t y , and that available community resources would better f i t t h e i r needs. However, th i s expectation has not been substan-t i a t e d i n general terms. 61.4% of the subjects were c l a s s i f i e d as either severely or profoundly mentally retarded (I.Q. 0-35). This trend i s also r e f l e c t e d i n the two groups. 59.2% of adults i n Group A and 63.6% of adults i n Group B have been c l a s s i f i e d as severely or profoundly mentally retarded. The higher per-centage of discharged severely or profoundly retarded adults i n the Normalization Group perhaps indicates the fact that more of t h i s category of adults now constitutes a higher per-centage of i n s t i t u t i o n a l residents (Eni, 1980). I t could also mean,that under the Normalization p o l i c y era, the l e v e l of mental retardation has not been a very s i g n i f i c a n t factor i n d e - i n s t i t u t i o n a l i z a t i o n . However, the more plausible explan-ation may be that guardians and r e l a t i v e s of i n s t i t u t i o n a l i z e d adults have become more aware of community l i v i n g alternatives and so have become more involved with the welfare of t h e i r kin - 155 -as p e r s o n s r a t h e r t h a n as d e v i a n t s . T h i s o r i e n t a t i o n may have been h e l p e d by p u b l i c d i s c u s s i o n s o f r e c e n t y e a r s (Chapter 1.0, pp. 5-6). The p o s i t i v e r e l a t i o n s h i p between I n t e l l i g e n c e Q u o t i e n t (I.Q.) and problems w i t h community adjustment has been dem-o n s t r a t e d ( B e l l , 1976, Chapter 2.0, p. 9 5 ) . H i g h e r f u n c t i o n -i n g m e n t a l l y r e t a r d e d a d u l t s have been found t o have problems a d j u s t i n g i n t h e community. T a b l e 10 compares the i n t e l l e c t u a l l e v e l s o f male s u b j e c t s i n the p r e - n o r m a l i z a t i o n and n o r m a l i z a t i o n Groups. 55.7% o f s e v e r e l y and p r o f o u n d l y r e t a r d e d a d u l t s i n Group A and 59.7% of s i m i l a r a d u l t s i n Group B comprise t h e m a j o r i t y o f d i s -c harged s u b j e c t s . These p e r c e n t a g e s do n o t , i n g e n e r a l , r e -f l e c t major d i f f e r e n c e s as the o v e r a l l t r e n d i n t h e p r o p o r t i o n o f s e v e r e l y p r o f o u n d l y r e t a r d e d a d u l t d i s c h a r g e s has been m a i n t a i n e d . T a b l e 11 p r o v i d e s s i m i l a r comparison f o r females i n Group A and Group B. The f i g u r e s show t h a t , a l t h o u g h t h e same t r e n d has been m a i n t a i n e d , the p r o p o r t i o n o f d i s c h a r g e d s e v e r e l y / p r o f o u n d l y m e n t a l l y r e t a r d e d females i n b o t h groups - as com-pa r e d t o males i n T a b l e 10 - i s h i g h e r (65.9% Group A, 71.9% Group B ) . The f i g u r e s appear t o i n d i c a t e t h a t more o f s e v e r e l y / p r o f o u n d l y r e t a r d e d f e males have been d i s c h a r g e d p r o p o r t i o n a l l y i n t h e two groups. I n g e n e r a l , the d i s t r i b u t i o n o f l e v e l s o f i n t e l l i g e n c e i n INTELLECTUAL LEVEL: MALE I.Q. Normal > 70 M i l d 55 - 69 Moderate 36 - 51 Severe 20 - 35 P r o f o u n d < 20 T o t a l GROUP No. o , *o No. % No. % No. % No. Q . "5 No. % P r e - N o r m a l i z a t i o n A 2 2.9 12 17.1 17 24.3 22 31.4 17 24.3 70 100 N o r m a l i z a t i o n B 4 6.0 9 13.4 14 20.9 21 31.4 19 28.3 67 100 TOTAL 6 4.4 21 15. 3 31 22.6 43 31.4 36 26.3 137 100 T a b l e 10: No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d i n t e l l e c t u a l l e v e l : M a l e , Group A and Group B INTELLECTUAL LEVEL: FEMALE I.Q. Normal > 70 M i l d 55- - 69 Moderate 36 - 51 Severe 20 - 35 P r o f o u n d < 20 T o t a l GROUP NO. Q . "5 No. o , "5 No. g , "5 No. g , *o No. Q . "5 No. % P r e - N o r m a l i z a t i o n A 2 5. 3 4 10.5 7 18.4 13 34.2 12 31.5 38 100 N o r m a l i z a t i o n B 2 6. 3 3 9.4 4 12.5 15 46.8 8 25.0 32 100 TOTAL 4 5. 7 7 10.0 11 15.7 28 40.0 20 28.6 70 100 T a b l e 11: No. and p e r c e n t a g e d i s t r i b u t i o n o f r e c o r d e d i n t e l l e c t u a l l e v e l : Female,  Group A and Group B - 157 -both groups or by sex i s f a i r l y uniform and consistent. How-ever, more of the very i n t e l l e c t u a l l y impaired females, es-p e c i a l l y from among Group B females appear to have been placed i n the community. Table 12 compares recorded s o c i a l age levels of pre-normal-i z a t i o n and normalization Groups. I t has been observed that t r a i n i n g i n So c i a l S k i l l s correlates p o s i t i v e l y with community placement (Stacy, Doleys and Malcolm, 1979. See also Chapter 2.0, p. 96). Also, Eyman et a l (1979, Chapter 2, p. 96) have found that some p r i n c i p l e s of normalization are related to the le v e l of s o c i a l development of retarded persons. Table 12 shows that 69.4% of Group A adults and 70.7% of Group B adults have been recorded as having a s o c i a l age between 6 and 10 years. 70% of a l l subjects have a s o c i a l age between 6 years and 10 years. A r e l a t i v e l y small proportion of adults 2.9% are be-tween 0 and 5 years i n s o c i a l age. 27.1% of the subjects have higher s o c i a l ages between 11 years and 20 years. There-fore a t y p i c a l d e - i n s t i t u t i o n a l i z e d adult from Woodlands could be regarded as someone whose s o c i a l age and therefore whose adaptive c a p a b i l i t y i s within the comparable age levels of 6 years to 10 years. Table 13 and Table 14 display s o c i a l age d i s t r i b u t i o n among male and female subjects respectively. The general trend i s si m i l a r i n that 72.3% of males and 65.7% of females are within the 6 years to 10 years s o c i a l age l e v e l s . A comparatively small proportion of males (2.9%) and females (2.8%) are within the 0-5 years s o c i a l age l e v e l . 24.8% of - 158 -SOCIAL AGE: MALE AND FEMALE **S.A. Group 0-5 y r s . No. % 6-10 y r s . No. % 11-15 yrs. No. % 16-20 y r s No. % T o t a l No. ' % Pre-N o r m a l i z a t i o n A 2 1.9 75 69.4 13 12.0 18 16.7 108 100 N o r m a l i z a t i o n B 4 4.1 70 70.7 12 12.1 13 13.1 99 100 TOTAL 6 2.9 145 70.0 25 12.1 31 15.0 207 100 **S.A.: S o c i a l Age Table 12: No. and percentage d i s t r i b u t i o n of recorded s o c i a l  age l e v e l f o r male and female s u b j e c t s : Group A  and Group B. SOCIAL AGE: MALE S.A. Group 0-5 y r s . No. % 6-10 y r s . No. %: 11-15 yrs. No. % 16-20 y r s No. % . T o t a l No. % Pre-N o r m a l i z a t i o n A 1 1.4 49 70.2 9 12.8 11 15.6 70 100 N o r m a l i z a t i o n B 3 4.5 50 74.6 6 9.0 8 11.9 67 100 TOTAL 4 2.9 99 72.3 15 10.9 19 13.9 137 100 Table 13: No. and percentage d i s t r i b u t i o n of recorded s o c i a l age l e v e l : Male Group A and Group B. SOCIAL AGE: FEMALE S.A. Group 0-5 y r s . No.. % 6-10 y r s . No. % 11-15 y rs. 16-20 y r s . T o t a l No. % No. % No. % Pre-N o r m a l i z a t i o n A 1 2.6 26 68.4 4 10.5 7 18.4 38 100 N o r m a l i z a t i o n B 1 3.1 20 62.5 6 18.8 5 15.6 32 100 TOTAL 2 2.8 46 65.7 10 14.3 12 : 17.1 70 100 Table 14: No. and percentage d i s t r i b u t i o n of recorded s o c i a l  age: Female Group A and Group B. - 159 -a d u l t males and 31.4% o f a d u l t females a re w i t h i n t h e 11 y e a r s t o 20 y e a r s age l e v e l s . I f i t i s i n d e e d c o r r e c t t h a t a t y p i c a l d i s c h a r g e d m e n t a l l y r e t a r d e d a d u l t from Woodlands has a s o c i a l age c a p a b i l i t y w i t h -i n 6 and 10 y e a r s , the q u e s t i o n t h e r e f o r e a r i s e s as t o h i s or h e r a d a p t i v e c a p a b i l i t y as an independent member o f s o c i e t y i n v i e w o f s o c i a l c o m p l e x i t i e s r a i s e d i n C h a p t e r 1.0 (pp. 77-20). P r e s e n t day s o c i a l demands r e q u i r e c e r t a i n a b i l i t i e s such as i n making d e c i s i o n s , i n f o r m e d c h o i c e and i n t e r p e r s o n a l r e l a t i o n -s h i p s w i t h o t h e r members o f s o c i e t y . I n d u s t r i a l i z a t i o n , urban-i z a t i o n and t e c h n o l o g i c a l advances would appear t o c o n s t i t u t e f u r t h e r problems f o r a 6 or 10 y e a r o l d e s p e c i a l l y i f normal-i z e d l i v i n g i s e x p e c t e d . On t h e o t h e r hand, t h e r e a r e m o r a l q u e s t i o n s w i t h r e s p e c t t o t h e c o n t i n u e d r e t e n t i o n o f such an i n d i v i d u a l w i t h i n t h e c o n f i n e s o f t h e i n s t i t u t i o n , e s p e c i a l l y i f t h e p e r s o n i s i n no danger t o h i m s e l f o r t o o t h e r members o f s o c i e t y . 5.1.5 N o r m a l i z a t i o n C o n t e n t i n S e r v i c e s S e r v i c e s w h i c h had been p r o v i d e d t o meet i n d i v i d u a l needs were s c o r e d t o det e r m i n e t h e e x t e n t o f n o r m a l i z a t i o n i n them. The c r i t e r i a f o r d e t e r m i n i n g l e v e l s o f n o r m a l i z a t i o n i n a s e r v i c e a re d e t a i l e d i n appendix C. A s e r v i c e i s n o r m a l i z i n g o r t h e r a p e u t i c i f (a) i t i s a p p l i c a b l e t o a l l s e c t i o n s o f the community, (b) t h e p r o c e s s cannot be d i s t i n g u i s h e d from e v e r y -day b e h a v i o u r o r e x p e c t a t i o n s o f p e o p l e i n g e n e r a l o r (c) i t cannot be i n t e r p r e t e d as unique t o t h e m e n t a l l y r e t a r d e d o r - 160 -t o any o t h e r group w i t h d i s a b i l i t y ( Norminal S c o r e : 3 ) . A s e r v i c e i s s u b - n o r m a l i z i n g o r m a i n t a i n i n g i n n a t u r e i f (a) t h e s e r v i c e o r b e h a v i o u r may o r may not be a p p l i c a b l e t o a l l s e c t i o n s of t h e community. I n o t h e r words i t i s d i f f i c u l t t o make a c l e a r judgement as t o the g e n e r i c o r s p e c i f i c n a t u r e o f the s e r v i c e . (b) The s e r v i c e o r p r o c e s s may o r may not be i n t e r p r e t e d as u n i q u e t o m e n t a l r e t a r d a t i o n o r t o any o t h e r group w i t h d i s a b i l i t y ( N o rminal S c o r e : 2 ) . A s e r v i c e i s l e a s t n o r m a l i z i n g o r C u s t o d i a l o r D e v i a n t i f (a) t h e s e r v i c e i s d i s t i n c t i v e l y c o n t r o l l i n g o r o n l y a p p l i c a b l e t o m e n t a l r e t a r d a t i o n o r t o any o t h e r d i s a b i l i t y group, (b) t h e p r o c e s s can be d i s t i n g u i s h e d from everyday b e h a v i o u r o r e x p e c t a t i o n s o f p e o p l e i n g e n e r a l , (c) t h e s e r v i c e o r p r o c e s s i s u nique t o a d i s a b i l i t y group o r t o m e n t a l r e t a r d a t i o n ( N o rminal S c o r e : 3 ) . Each o f the seven s e r v i c e s measured have s p e c i f i c c r i t e r i a f o r measuring them which has been based on i m p l i c i t and e x p l i c i t judgements d i s c u s s e d i n C h a p t e r s 3.0 and 4.0. Each s e r v i c e has been s c o r e d i n d i v i d u a l l y . A s u b j e c t may have more th a n one need. The maximum number o f needs f o r some s u b j e c t s i s f i v e . The average number o f needs i s t h r e e . The d i s t r i b u t i o n o f a l l s e r v i c e s p e r s c o r e o f n o r m a l i z -a t i o n measure i s t a b u l a t e d i n T a b l e 15. 24.6% of a l l s e r v i c e s were n o r m a l i z i n g . 29.8% o f a l l s e r v i c e s were judged as some-what between n o r m a l i z i n g and d e v i a n t . I n o t h e r words, t h e y were s u b - n o r m a l i z i n g . 45.6% o f a l l s e r v i c e s were judged as - 161 -SCORE AND LEVEL OF NORMALIZATION Score: Group 3 Normalizing No. (%) 2 Sub-Normalizing No. (%) 1 Least Normalizing No. (%) Total No. (%) Pre-Normalization Group A Male & Female 439 (22.9) 639 (33.4) 837 (43.7) 1,915 (100) Normalization Group B Male & Female 497 (26.4) 493 (26.2) 895 (47.4) 1,885 (100) Total 936 (24.6) 1,132 (29.8) 1,732 (45.6) 3,800 (100) Table 15 No. and percentage score, for each measure of normalization content. Group A and Group B; Male and Female. - 162 -L e a s t - N o r m a l i z i n g , c u s t o d i a l o r d e v i a n t . There were more d e v i a n t o r l e a s t n o r m a l i z i n g s e r v i c e s t h a n t h e r e were normal-i z i n g o r s u b - n o r m a l i z i n g s e r v i c e s . T h i s p a t t e r n i s r e f l e c t e d i n t h e d i s t r i b u t i o n o f normal-i z a t i o n c o n t e n t f o r each group. About one q u a r t e r o f a l l group s e r v i c e s were n o r m a l i z i n g (Group A 22.9%., Group B 26.4%). D e v i a n t s e r v i c e s c o n s t i t u t e 4 3.7% o f Group A s e r v i c e s and 47.4% o f Group B s e r v i c e s . These f i g u r e s show t h a t t h e r e were s l i g h t l y more d e v i a n t s e r v i c e s p r o v i d e d f o r t h e N o r m a l i z a t i o n Group B th a n f o r P r e - N o r m a l i z a t i o n Group A. However, t h e f i g u r e s a l s o show a s l i g h t i n c r e a s e i n n o r m a l i z e d s e r v i c e s f o r Group B. T a b l e 16 i s a breakdown o f n o r m a l i z a t i o n s c o r e s f o r males i n Group A and Group B. A g a i n , the g e n e r a l t r e n d has been m a i n t a i n e d . About one q u a r t e r o r l e s s o f a l l s e r v i c e s f o r each group was judged n o r m a l i z i n g - 22.9% Group A, 25.3% Group B. N e a r l y h a l f o f a l l s e r v i c e s i n each group a r e l e a s t normal-i z i n g - 42.7% Group A and 48.3% Group B. I n g e n e r a l , t h e r e i s l i t t l e p e r c e p t i b l e d i f f e r e n c e i n n o r m a l i z a t i o n c o n t e n t f o r t h e p r e - n o r m a l i z a t i o n and the N o r m a l i z a t i o n Groups. T a b l e 17 compares n o r m a l i z a t i o n c o n t e n t f o r female s u b j e c t s i n b o t h groups. A g a i n , t h e g e n e r a l t r e n d has been m a i n t a i n e d . About one q u a r t e r o f s e r v i c e s f o r female s u b j e c t s were normal-i z i n g - 22.9% Group A, 28.6% Group B. The p e r c e n t a g e o f d e v i -ant s e r v i c e s f o r b o t h female Groups was about the same - 45.4% - 163 -SCORE AND LEVEL OF NORMALIZATION Score: Group 3 N o r m a l i z i n g No. (%) 2 Sub-N o r m a l i z i n g 1 L e a s t N o r m a l i z i n g T o t a l No. („%) ; No. : (%) No. (%) P r e - N o r m a l i z a t i o n Group A Male 267 (22.9) 401 (34.4) 497 (42.7) 1,165 (100) N o r m a l i z a t i o n Group B Male 317 (25.3) 332 (26.5) 606 (48.3) 1,255 (100) TOTAL 584 C24.1) 733 (30.1) 1,103 (45.6) 2,420 (TOO) Table 16 T o t a l number and percentage score f o r each measure of n o r m a l i z a t i o n content. Male Group A arid Group B~ SCORE AND LEVEL OF NORMALIZATION Score: Group 3 N o r m a l i z i n g No. (%) 2 Sub-N o r m a l i z i n g No. (%) 1 Least N o r m a l i z i n g No. (%) T o t a l No. (%) P r e - N o r m a l i z a t i o n Group A Female 172 (22.9) 238 (31.7) 34 0 (45.4) 750 (100) N o r m a l i z a t i o n Group B Female 180 (28.6) 161 (25.6) 289 (45.8) 630 (100) TOTAL 352 (25.5) 399 (28.9) 629 (45.6) 1,380 (100) Table 17 T o t a l number and percentage score f o r each measure of n o r m a l i z a t i o n content. Female Group A arid Group B - 164 -Group A, 45.8% Group B. Table 18 and Table 19 compares the d i s t r i b u t i o n of n o r m a l i z a t i o n content of s e r v i c e s f o r males and females i n each group. Male and female s u b j e c t s i n Group A had even scores f o r n o r m a l i z i n g s e r v i c e s 22.9% male, 22.9% female. The l e a s t n o r m a l i z i n g s e r v i c e s made up 42.7% and 45.4% of male and female s e r v i c e s r e s p e c t i v e l y . However, Group B female s u b j e c t s had s l i g h t l y more normal-i z e d s e r v i c e s (28.6%) than Group B male s u b j e c t s (25.3%) (Table 19). A l s o t h e r e i s a s l i g h t drop i n the percentage of l e a s t -n o r m a l i z i n g s e r v i c e s f o r Group B female s u b j e c t s (45.8%) com-pared t o Group B male s u b j e c t s (48.3%). T h i s i s the f i r s t time there has been a drop r a t h e r than a s l i g h t i n c r e a s e i n the percentage of Group B l e a s t n o r m a l i z i n g scores compared to Group A l e a s t n o r m a l i z i n g s c o r e s . O v e r a l l , t h e r e i s some c o n s i s t e n c y i n the manner normal-i z a t i o n content has been d i s t r i b u t e d i n s e r v i c e s used t o meet the needs of Group A and Group B. In both the p r e - n o r m a l i z -a t i o n and N o r m a l i z a t i o n Groups, about one q u a r t e r of a l l s e r v i c e s were normalized and s l i g h t l y l e s s than h a l f were d e v i a n t . The s l i g h t drop i n d e v i a n t s e r v i c e s f o r Group B female s u b j e c t s c o u l d not be e x p l a i n e d . N e v e r t h e l e s s , from a l l the f i g u r e s f o r both Groups, one c o u l d conclude t h a t no major d i f f e r e n c e e x i s t s i n the content of n o r m a l i z a t i o n . A g e n e r a l t r e n d has been maintained i n which both the r a t i o and the content of n o r m a l i z a t i o n was constant over the years - 165 -SCORE AND LEVEL OF NORMALIZATION S c o r e : Group 3 N o r m a l i z i n g No. (%) 2 Sub-N o r m a l i z i n g No. (%) 1 L e a s t N o r m a l i z i n g No. (%) T o t a l No. (%) Group A Male 267 (22.9) 401 (34.4) 497 (42.7) 1,165 Group A Female 172 (22.9) 238 (31.7) 340 (45.4) 750 TOTAL 439 (22.9) 639 (33.4) 837 (43.7) 1,915 T a b l e 18 No. and p e r c e n t a g e s c o r e f o r each measure o f normal-i z a t i o n c o n t e n t : Male Group A and Female Group A SCORE AND LEVEL OF NORMALIZATION S c o r e : Group 3 N o r m a l i z i n g No. (%) 2 Sub-N o r m a l i z i n g No. (%) 1 L e a s t N o r m a l i z i n g No. (%) T o t a l No. (%) Group B Male 317 (25.3) 332 (26.5) 606 (48.3) 1,255 (100) Group B Female 180 (28.6) 161 (25.6) 289 (45.8) 630 (100) TOTAL 497 (26.3) 493 (26.2) 895 (47.5) 1,885 (100) T a b l e 19 No. and p e r c e n t a g e s c o r e f o r each measure o f normal-i z a t i o n c o n t e n t : Male Group B and Female Group B. - 166 -irre s p e c t i v e of changes i n p o l i c y . Table 20 and Table 21 show the number and percentage of services scored per l e v e l of normalization for males and females respectively. Table 20 shows the following features: (a) There were more normalized r e s i d e n t i a l services for males i n Group A (30.0%) than for males i n GroupB (21.1%). This feature has been unexpected. One would have expected to observe more normalized services under the s o c i a l p o l i c y than under the medico-custodial p o l i c y . I t would appear that several of the new community r e s i d e n t i a l alternatives which were introduced aft e r 1974 were deviant i n themselves (See table 4). Except for Family Care Homes, other r e s i d e n t i a l alternatives such as Long Term Care, extended care homes, nursing care homes and to some extent, Group homes, tended to score very l i t t l e In measured normalization content using study c r i t e r i a . (b) Males i n Group B used s l i g h t l y more of medical services (38.2%) than males i n Group A (34.8%). (c) A l l of the psychology ser-vices for male Group A (8.0%) and male Group B (7.4%) were scored as deviant services. (c) No educational services were provided for Group A males. Only 5.0% of educational services for Group B males were normalized. (d) Group A males had more deviant s o c i a l services (36.8%) than Group B males (24.0%). (e) Group B males had more least normalizing vocational services than Group A males. Except for the above observations, the pattern and SERVICES Normal-i z a t i o n RES . MED. SOC. PSYCH. REC. VOC. ED. TOTAL Group Sc o r e NO Q. • "6 No. % No % No. "5 No. No. % No. NO. Pre-Norm-a l i z a t i o n Group A Male 3 80 30 .0 93 34.8 20 7.5 0 0 41 15.4 33 12.3 0. 0 2.67 100 2 80 20.0 152 38.0 57 14 .2 0 0 95 23.7 17 4.1 0 0 401 100 1 190 38.2 0 0 183 36.8 40 8.0 39 8.0 45 : 9.0 0 0 49 7 100 Normal-i z a t i o n Group 3 67 21.1 121 38.2 27 8.5 0 0 50 15.8 36 11.4 16 5.0 317 100 2 77 23.2 106 31.9 82 24 .7 0 0 30 9.1 25 7.5 12 3.6 332 100 B Male 1 191 31.5 33 5.5 146 24.0 45 7.4 75 12.4 84 13.9 32 5.3 606 100 T a b l e 20: No. and p e r c e n t a g e o f s e r v i c e s s c o r e d p e r l e v e l o f n o r m a l i z a t i o n : Male  Group A and Group B Key 3: N o r m a l i z i n g 2: S u b - n o r m a l i z i n g 1: L e a s t N o r m a l i z i n g - 168 -d i s t r i b u t i o n of n o r m a l i z a t i o n content i n Groups A and B s e r v i c e s appear t o be s i m i l a r . I t i s remarkable t h a t no d e v i a n t medical s e r v i c e s were observed f o r Group A males whereas 5.5% of d e v i a n t m e d i c a l s e r v i c e s were scored f o r N o r m a l i z a t i o n Group B males. Table 21 compares n o r m a l i z a t i o n content of s e r v i c e s f o r females i n Group A and Group B. The same g e n e r a l o b s e r v a t i o n s f o r male s u b j e c t s seem a p p l i c a b l e t o female s u b j e c t s . (a) There were more normalized r e s i d e n t i a l s e r v i c e s f o r Group A females (32.0%) than f o r Group B females (24.4%). (b) Group B females used s l i g h t l y more normalized medical s e r v i c e s (32.8%) than Group A female s u b j e c t s (29.1%). (c) No e d u c a t i o n a l s e r v i c e s were p r o v i d e d f o r Group A female s u b j e c t s . (d) Group A females had s l i g h t l y more d e v i a n t s o c i a l s e r v i c e s (33.8%) than Group B female s u b j e c t s (27.7%). (d) U n l i k e the men i n Group A, Group A females had more d e v i a n t v o c a t i o n a l s e r v i c e s (13.2%) than Group B females (9.0%). (e) A l l psychology s e r v i c e s i n both groups were scored a t l e a s t n o r m a l i z i n g (11.5% Group A female, 6.9% Group B female). In g e n e r a l , the p a t t e r n of d i s t r i b u t i o n of n o r m a l i z a t i o n content appear s i m i l a r f o r the p r e - n o r m a l i z a t i o n and normal-i z a t i o n Groups. Table 22 and Table 23 d i s p l a y n o r m a l i z a t i o n content scores and s e r v i c e c h a r a c t e r i s t i c s f o r males i n the P r e - n o r m a l i z a t i o n Group A and N o r m a l i z a t i o n Group B. The Tables show the normal-i z a t i o n s cores f o r the nature, type, name, l o c a t i o n and extent of i n t e g r a t i o n as c h a r a c t e r i s t i c s o f each, of the seven s e r v i c e s . SERVICES C r i t e r i a Group S c o r e No RES. Q, • "O MED. No. % No SOC. % PSYCH. No. % No REC. o. VOC. No. % ED. No. % TOTAL No. Q. O Pre-Norm-a l i z a t i o n Group A" Female 3 55 32.0 50 29.1 15 8.7 0 0 34 19.8 18 10.4 0 0 172 100 2 33 13.9 76 31.9 40 16.8 0 0 77 32.1 12 5.0 0 0 238 100 1 102 30.0 14 4.1 115 33.8 25 11.5 39 7.4 45 13.2 0 0 340 100 Normal-i z a t i o n Group B Female 3 44 24.4 59 32.8 18 10.0 0 0 36 20.0 11 6.1 12 6.7 180 100 2 27 16.8 49 30 .4 37 23.0 0 0 27 16.8 8 5.0 13 8.0 161 100 1 89 30 .8 12 4.2 80 27.7 20 6.9 42 14.5 26 9.0 20 6.9 289 100 T a b l e 21: No. and p e r c e n t a g e o f s e r v i c e s s c o r e d p e r l e v e l o f n o r m a l i z a t i o n : Female  Group A and Group B Key 3: N o r m a l i z i n g 2: S u b - n o r m a l i z i n g 1: L e a s t n o r m a l i z i n g *SERVICE CHARACTERISTIC: MALE RESIDENTIAL Normal i z a t i o n L e v e l s Normal-i z i n g . Sub-normal-i z i n g L e a s t Normal-i z i n g ^ C r i t e r i a ) Score Nu No. % PRE-NORMALIZATION: GROUP A NORMALIZATION: GROUP B 16 22.9 1 1.4 53 75.7 Ty No. % 15 21.4 7 10.0 48 68.6 Na No. % 16 22.9 49 70.0 5 7.1 Lo No. % 18 25.7 17 24.3 35 50.0 In No. % 15 21.4 6 8.6l Nu No. % Ty No. % 14 20.9 3 4.4 49 70.01 50 1LJ. Na No. % 1£ 2J^R 5 7.4 A S 6 8 . 7 Lo No. % 46 68.7 12 16.4 JLZ 25.4 I n No. % 10 14.9 34 50.7 7 10.5 T o t a l 70 100 70 100 I 70 100 70 100 I 70 100 I 67 100 I 67 100 167 100 167 1 00 167 1 00 o SERVICE CHARACTERISTIC: MALE MEDICAL Normal i z a t i o n L e v e l s C r i t e r i a ] S core Normal-i z i n g Sub-normal-i z i n g ^ L e a s t Normal-i z i n g Nu INO. % T o t a l PRE-NORMALIZATION: GROUP A NORMALIZATION: GROUP B 13 26.5 36 73.5 0 0 49 100 Ty No. % Na No. % Lo INO. % 10 20.4 39 79.6 0 0 49 100 46 93.9 6.1 _0_ 49 100 In I Nu No. % |No. % 12 24.3 37 75.5 49 100 12 24.5 37 75.5 -0 0 22 42.3 Ty No. % Na No. % Lo No. % 15 28.9 22 42.3 8 15.4 49 100 I 52 100 52 1 ^1 50.-6 _£ 11.5 LOO 44 84.6 7.7 4 7.7 52 100 2fj__lB__5 20 38.5 In No. s _8 15^3. 52 100 25 48.1 7 13.. 4 52 100 Key: Nu: Nature of S e r v i c e Ty: Type of S e r v i c e Na: Name of S e r v i c e Lo: L o c a t i o n o f S e r v i c e In: L e v e l of I n t e g r a t i o n T a b l e 22: No. and percentage d i s t r i b u t i o n of s e r v i c e c h a r a c t e r i s t i c scores per l e v e l of n o r m a l i z a t i o n : Male Group A and Group B ( R e s i d e n t i a l and M e d i c a l S e r v i c e s ) SERVICE CHARACTERISTIC: MALE SOCIAL I r H •H I Normal i z a t i o n L e v e l s C r i t e r i a S c o r e PRE-NOJ Nu No. % LMALIZATIC Ty No. % )N: GROUP Na No. % A Lo No. % I n No. % NORMALI Nu No. % ZATION: Ty No. % GROUP B • Na No. % Lo No. % I n No. % Normal-i z i n g 3 4 7.7 4 7.7 4 7.7 4 7.7 4 7.7 7 13.-8 8 15.7 4 7.8 4 7.8 4 7. Sub-normal-i z i n g 2 6 11.5 6 11.5 0 0.0 42 80.8 3 5.8 12 23.5 8 15.7 10 19.6 44 86.3 8 15. L e a s t Normal-i z i n g 1 42 80.8 42 80.8 48 92.3 6 11.5 45 86.5 |32 62.7 35 68.6 37 75.6 3 5.9 39 76. T o t a l 52 100 52 100 52 100 52 100 52 100 | 51 100 151 100 51 100 51 100 51 100 PRE-NOF Nu No. % SERVICE CHARACTERISTIC: MALE PSYCHOLOGICAL Normal i z a t i o n L e v e l s C r i t e r i a S c o r e LMALIZATIO Ty No. % N: GROUP Na No. % A Lo NO. % NORMALI I n 1 Nu No. % |No. % ZATION: Ty No. % GROUP B Na No. % Lo No. % I n No. ct Normal- -j i z i n g Sub-normal-o i z i n g L e a s t Normal-i z i n g 1 8 100 8 100 8 100 8 100 8 100 9 100 9 100 9 100 9 100 9 100 T o t a l 8 100 8 100 8 100 8 100 8 100 | 9 100 9 100 9 100 9 100 9 100 Key: Nu: Ty: Na: Lo: Tr, • N a t u r e o f S e r v i c e Type o f S e r v i c e Name o f S e r v i c e L o c a t i o n o f S e r v i c e T a b l e 22: No. and pe r c e n t a g e d i s t r i b u t i o n o f s e r v i c e c h a r a c t e r i s t i c s c o r e s p e r l e v e l o f n o r m a l i z a t i o n : Male Group A and Group B ( S o c i a l and P s y c h o l o g i c a l S e r v i c e s ) SERVICE CHARACTERISTIC: MALE RECREATIONAL C M Normal i z a t i o n L e v e l s C r i t e r i a S c o r e PRE-NOI Nu No. % IMALIZATIC Ty No. % N: GROUP Na No. % A Lo No. % I n No. % NORMALI Nu No. % ZATION: Ty No. % GROUP B Na No. % Lo No. % I n No. % Normal-i z i n g 3 2 5.7 2 5.7 33 94.3 2 5.7 2 5.7 8 25.8 8 25.8 17 54.9 13 41.9 4 12.9 Sub-normal-i z i n g 2 31 88.6 0 0.0 2 5.7 33 94.3 29 82.9 5 16.1 7 22.6 5 16.1 12 38.7 1 3.2 L e a s t Normal-i z i n g 1 2 5.7 33 94.3 0 0.0 0 0.0 4 11.4 18 58.1 • — 16 51.6 9 29.0 6 19.4 26 83.9 T o t a l 35 100 35 100 35 100 35 100 35 100 31 100 31 100 31 100 31 100 31 100 PRE-NOF Nu No. % SE IRVICE CHARACTERISTIC: MALE VOCATIONAL Normal i z a t i o n L e v e l s C r i t e r i a S c o r e LMALIZATIO Ty No. % N: GROUP Na No. % A Lo No. % I n No. % NORMALI Nu No. % ZATION: Ty No. % GROUP B Na No. % Lo No. % I n NO. * Normal-i z i n g 3 6 31.6 6 31.6 7 36.8 9 47.4 5 26.3 4 13.8 8 27.6 4 13.8 16 55.2 4 13.8 Sub-normal-i z i n g 2 4 21.0 3 15.8 3 15.8 5 26.3 2 10.5 7 24.1 5 17.2 2 6.9 9 31.0 .2 6.. 9 L e a s t Normal-i z i n g 1 9 47.4 10 52.6 9 47.4 5 26.3 12 63.2 18 62.1 16 55.2 23 79.3 4 13.8 23_J7_9.3 29 1D.0 T o t a l 19 100 19 100 19 100 19 100 19 100 129 100 29 100 29 100 29 100 Key: Nu: N a t u r e o f S e r v i c e Ty : Type o f S e r v i c e Na: Name o f S e r v i c e Lo: L o c a t i o n o f S e r v i c e T r i . T n , r ^ 1 ~ - P T ~ 4- ^  /-.•»- 4- •! ~» T a b l e 23: No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e c h a r a c t e r i s t i c s c o r e s p e r l e v e l o f n o r m a l i z a t i o n :  Male Group A and Group B ( R e c r e a t i o n a l and v o c a t i o n a l ) SERVICE CHARACTERISTIC: MALE EDUCATIONAL Normal i z a t i o n Levels Normal-i z i n g Criteria) Score PRE-NORMALIZATION: GROUP A NORMALIZATION: GROUP B Nu No. % Ty No. % Na No. % Lo No. % In No. % Nu No, No. 8 66.7 Ty No. Na Lo No. % 8 66.7 In No. Sub-normal-i z i n g Least Normal-i z i n g ^ 4 33.3 6 50.0 1 8.3 Tota l 50.0 11 91.7 33.3 12 100 12 100 12 100 12 100 11 91. Key: Nu: Nature of Service Ty: Type of Service Na: Name of Service Lo: Location of Service In: Level of Integration Table 23: No. arid percentage d i s t r i b u t i o n of service c h a r a c t e r i s t i c scores per l e v e l of normalization; Male Group A and Group B CEducational) - 174 -The purpose was to locate which aspect of a service had been normalizing or deviant. A high percentage of the nature, and type of r e s i d e n t i a l services i n Group A (75.7%, 68.6%) and Group B (74.7% and 68.7%) are deviant. 70.0% Group A and 68.7% Group B residences had names which could neither be interpreted as normalizing nor as deviantizing. Half of Group A (50.0%) and Group B (50.7%) r e s i d e n t i a l f a c i l i t i e s are located i n areas which are isola t e d from normal r e s i d e n t i a l areas. Many of the subjects were found i n Boarding homes which have been located i n farming country-side away from the o r i g i n a l place of i n i t i a l admission to Wood-lands. Many of these p r i v a t e l y owned r e s i d e n t i a l f a c i l i t i e s had been i n operation before the introduction of normalization p o l i c y but have continued to receive residents from Woodlands. 70.0% of male r e s i d e n t i a l f a c i l i t i e s i n Group A and 74.6% of simil a r f a c i l i t i e s i n Group B males were exclusively for handi-capped groups or for mental retardation. The common feature was that several of the Boarding homes also had mentally i l l persons. There was no integration with non-handicapped members of the communities. Less than one quarter of the f i v e r e s i d e n t i a l character-i s t i c s were normalized for males i n both Groups. The nature (Group A 26.5%, Group B 42.3%), Type (Group A 20.4%, Group B 28.9%), Location (Group A 24.5%, Group B 38.5%) and Integration (Group A 24.5%, Group B 38.5%) ch a r a c t e r i s t i c s of Medical Services for Group B males were more normalized - 175 -than for Group A males. However, there were no deviant com-munity services for Group A males. The l a t t e r observation may be due to new forms of r e s i d e n t i a l alternatives such as extended care homes and which were e s s e n t i a l l y medical i n orientation. Medical services for both groups were largely provided i n private physicians' o f f i c e s although more of these were found with Group A males (Group A 93.9%, Group B 84.6%). The c h a r a c t e r i s t i c s of s o c i a l services for males i n both Groups, except for location c h a r a c t e r i s t i c s , were e s s e n t i a l l y deviant or least normalizing - Nature (Group A 80.8%, Group B 62.7%); Type (Group A 80.8%, Group B 68.6%); Name (Group A 92.3%, Group B 75.6%); Integration (Group A 86.5%, Group B 76.5%). However, a higher percentage of Group A male s o c i a l services were le a s t normalizing than those of Group B. In both Groups, s o c i a l services were often located i n places which largely scored as sub-normalizing (Group A 80.8%, Group B 86.3%). So c i a l workers from the Ministry of Health, Mental Health d i v i s i o n handle most of the services for boarding homes outside of the C i t y of Vancouver, North and West Vancouver. Except for s l i g h t increases i n the percentage of normalized service c h a r a c t e r i s t i c s of Nature (13.8%) and Type (15.7%) of Group B male s o c i a l services, a l l other c h a r a c t e r i s t i c s for both Groups were below 8% normalization. Psychological services were deviant f o r males i n both groups i n a l l service c h a r a c t e r i s t i c s . There were no normalized - 176 -p s y c h o l o g i c a l s e r v i c e s d u r i n g b o t h p e r i o d s under s t u d y . T h i s may be due t o few number o f p r i v a t e p s y c h o l o g i c a l s e r v i c e s i n e x i s t e n c e w h i c h are o r i e n t e d towards b e h a v i o u r m o d i f i c a t i o n and mental r e t a r d a t i o n . I t appeared t h a t t h e r e was c o n t i n u e d dependence f o r such s e r v i c e s on t h e I n s t i t u t i o n . P s y c h o l o g y s e r v i c e s w h i c h were o r g a n i z e d by t h e v o l u n t e e r s e c t o r had been t a r g e t e d e x c l u s i v e l y t o t h e m e n t a l l y r e t a r d e d , hence t h e low n o r m a l i z a t i o n s c o r e s . The c r i t e r i a d i d not measure outcome, but s i m p l e c h a r a c t e r i s t i c s o f n a t u r e , t y p e , name, l o c a t i o n and degree o f i n t e g r a t i o n w i t h n o n - r e t a r d e d p e r s o n s . T a b l e 23 shows the number and p e r c e n t a g e d i s t r i b u t i o n o f n o r m a l i z a t i o n s c o r e s p e r s e r v i c e c h a r a c t e r i s t i c f o r r e c r e a t i o n a l , v o c a t i o n a l and e d u c a t i o n a l s e r v i c e s . The n a t u r e ( 8 8 . 6 % ) , l o c a t i o n (94.3%) and i n t e g r a t i o n (82.9%) of r e c r e a t i o n a l s e r v i c e s f o r males i n Group A s t r a d l e the boundary between n o r m a l i z e d and d e v i a n t s e r v i c e s . On t h e o t h e r hand, the n a t u r e (58.1%) t y p e (51.6%) and i n t e g r a t i o n (83.9%) of r e c r e a t i o n a l s e r v i c e s f o r male Group B s e r v i c e s were e s s e n t i a l l y d e v i a n t o r l e a s t n o r m a l i z i n g . However, Group B male r e c r e a t i o n a l s e r v i c e s had h i g h e r p e r c e n t a g e o f n o r m a l i z e d c h a r a c t e r i s t i c s o f n a t u r e (Group A 5.7%, Group B 25.8%), t y p e (Group A 5.7%, Group B 25 . 8 % ) , l o c a t i o n (Group A 5.7%, Group B 41.9%) and i n t e g r a t i o n (Group A 5.7%, Group B 12.9%). From th e s e p e r c e n t a g e f i g u r e s one may i n f e r t h a t the N o r m a l i z a t i o n Group B male s u b j e c t s had h i g h e r numbers o f n o r m a l i z e d s e r v i c e c h a r a c t e r i s t i c s t h a n t h e p r e - n o r m a l i z a t i o n Group A male sub-j e c t s . - 177 -T h i s f i n d i n g has been e x p e c t e d i n v i e w o f the p r e v a i l i n g p h i l o s o p h y o f n o r m a l i z e d t r e a t m e n t f o r r e t a r d e d p e r s o n s . The c h a r a c t e r i s t i c s o f v o c a t i o n a l s e r v i c e s f o r males i n b o t h groups were e s s e n t i a l l y l e a s t n o r m a l i z i n g : N a t u r e , (Group A 47.4%, Group B 62.1% ) , Type (Group A 52.6%, Group B 55. 2 % ) , Name (Group A 47.4%, Group B 79.3% and degree o f i n -t e g r a t i o n (Group A 63.2%, Group B 79.3%). The l o c a t i o n s o f v o c a t i o n a l s e r v i c e s f o r Group B (55.2%) were s l i g h t l y more n o r m a l i z e d t h a n t h o s e o f Group A (47 . 4 % ) . O t h e r w i s e a l l o t h e r v o c a t i o n a l s e r v i c e c h a r a c t e r i s t i c s o f Group A males had h i g h e r n o r m a l i z e d p e r c e n t a g e s c o r e s : N a t u r e (Group A 31.6%, Group B 13.8% ) ; Type (Group A 31.6%, Group B 2 7 . 6 % ) , Name (Group A 36.8%, Group B 13.8%) and I n t e g r a t i o n (Group A 26.3%, Group B 13.8%) . T h i s has been an unexpected f i n d i n g . There i s no read y e x p l a n a t i o n e x c e p t t o comment t h a t f u r t h e r s t u d y may be r e -q u i r e d i n o r d e r t o f i n d o u t why p r e - n o r m a l i z a t i o n v o c a t i o n a l s e r v i c e s had been more n o r m a l i z e d . T a b l e 23 a l s o shows t h a t Group A s u b j e c t s d i d n ot r e c e i v e e d u c a t i o n a l s e r v i c e , a t l e a s t , s e r v i c e s t h a t c o u l d be d e t e c t e d and measured w i t h t h e methodology used i n t h i s s t u d y . E x c e p t f o r n o r m a l i z e d c h a r a c t e r i s t i c s o f n a t u r e (66.7%) and l o c a t i o n (66.7%) o t h e r e d u c a t i o n a l s e r v i c e c h a r a c t e r i s t i c s were s u b n o r m a l i z i n g o r d e v i a n t . E d u c a t i o n a l s e r v i c e s were l a r g e l y l o c a t e d i n community c o l l e g e s o r r e g u l a r community s c h o o l b u i l d i n g s . O t h e r w i s e , t h e s e s e r v i c e s were n e i t h e r - 178 -i n t e g r a t e d (91.7%) nor g i v e n g e n e r i c names (9 1 . 7 % ) . H a l f o f them were d e c i d e d l y d e v i a n t o r l e a s t n o r m a l i z i n g i n t y p e . T a b l e 24 and T a b l e 25 compares s c o r e s o f s e r v i c e c h a r a c t e r -i s t i c s and l e v e l s of n o r m a l i z a t i o n f o r female s u b j e c t s i n Group A and Group B. Female r e s i d e n t i a l s e r v i c e s were e s s e n t i a l l y d e v i a n t i n the c h a r a c t e r i s t i c s o f n a t u r e (Group A 65.2%, Group B 65.6 % ) , Type (Group A 68.5%, Group B 6 8 . 7 % ) , L o c a t i o n (Group A 44.7%, Group B 46.7%) and I n t e g r a t i o n (Group A 65.8%, Group B 68.7%). L e s s t h a n 35% o f Group A and Group B female r e s i d e n t i a l s e r -v i c e s were n o r m a l i z e d . O v e r a l l , t h e p a t t e r n o f s e r v i c e c h a r -a c t e r i s t i c s c o r e s and n o r m a l i z a t i o n c o n t e n t were s i m i l a r f o r b o t h groups. A s l i g h t l y h i g h e r p e r c e n t a g e o f female r e s i d e n t i a l s e r v i c e s t h a n male r e s i d e n t i a l s e r v i c e s f o r a l l groups were n o r m a l i z e d . A l l t h e s e r v i c e c h a r a c t e r i s t i c s o f Group B female m e d i c a l s e r v i c e s , e x c e p t i n name, were more n o r m a l i z e d t h a n t h o s e o f Group B female s u b j e c t s : Name (Group A 25.0%, Group B 41.7%), Type (Group A 17.9%, Group B 29.2 % ) , L o c a t i o n (Group A 21.4%, Group B 45.8%) and I n t e g r a t i o n (Group A 25.0%, Group B 45.8%). A l t h o u g h t h e name c h a r a c t e r i s t i c o f m e d i c a l s e r v i c e s was h i g h l y n o r m a l i z e d (Group A 89.3%, Group B 83.4%) n e v e r t h e l e s s , o t h e r m e d i c a l s e r v i c e c h a r a c t e r i s t i c s were l e s s t h a n 4 6% n o r m a l i z e d . S o c i a l s e r v i c e c h a r a c t e r i s t i c s f o r b o t h female groups, SERVICE CHARACTERISTIC; FEMALE RESIDENTIAL Normal i z a t i o n L e v e l s C r i t e r i a ) S c o r e Nu No. PRE-NORMALIZATION: Ty No. Na No. GROUP A % NORMALIZATION: GROUP B Lo NO. I n No. Nu No. Ty No. % Na No. Lo No. I n No. % Norma1-i z i n g 11 28.9i 9 23.7 12 31.6 13 34.2 10 26.4 8 25.0 8 25.0 10 31.3 11 34.4 7 21.9 Sub-normal-i s i n g ^ 5.3 7.8 17 44.7 8 21.1 7.8 9.4 6.3 13 40.6 6 18.9 3 9.4 L e a s t Normal-i s i n g ^ 25 65.6 26 68.5 9 23.7 17 44, 25 65.8 21 65.6 22 68.7 9 28.1 15 46.7 22 68.7 T o t a l 38 100 38 100 38 100 38 100 38 100 32 100 32 100 32 100 32 100 32 100 rH Normal i z a t i o n L e v e l s Norma1-i z i n g Sub-normal-i z i n g ^ L e a s t Normal-i z i n g C r i t e r i a ! S c o r e Nu !No. % T o t a l SERVICE CHARACTERISTIC: FEMALE MEDICAL PRE-NORMALIZATION: GROUP A NORMALIZATION: GROUP B 7 25 .q 20 71.5 1 3. Ty No. % 5 17.9 22 78.6 Na No. % 25 89.3 Lo No. % 2 7.2 28 5 100 1 3.5 28 100 1 3.5 28 100 I n I Nu No. % 6 21.4 7 25.0 12 42.9 10 35 A 28 100 20 71.5 No. % Ty NO. % 10 41.7 1 3.5 12 50.0 2 8.3 28 100 II 24 100 Na No. % 7 29.2 15 62.5 2 8.3 24 100 20 83.4 Lo No. % 2 8.3 2 8.3 24 100 11 45.8 I n No. -11 45.8 10 41.7 3 12.5 24 100 10 41.7 _3__12.5 24 100 Key: Nu: N a t u r e o f S e r v i c e Ty: Type o f S e r v i c e Na: Name o f S e r v i c e Lo: L o c a t i o n o f S e r v i c e T a b l e 24: No. and pe r c e n t a g e d i s t r i b u t i o n o f s e r v i c e c T T a r a c t e r i s t i c s c o r e s p e r l e v e l o f n o r m a l i z a t i o n Female Group A arid Group B ( R e s i d e n t i a l a n a M e d i c a l S e r v i c e s ) SERVICE CHARACTERISTIC: FEMALE SOCIAL o 00 rH Normal i z a t i o n L e v e l s C r i t e r i a Score PRE-NOJ Nu No. % LMALIZATIO Ty No. % N: GROUP Na No. % A Lo No. % In No. % NORMALI Nu No. % ZATION: Ty No. % GROUP B • Na No. % Lo No. % In No. % Normal-i z i n g 3 3 8.8 3 8.8 3 8.8 3 8.8 3 8.8 4 14.8 5 18.5 3 11.1 3 11.1 3 11. Sub-normal-i z i n g 2 5 14.7 4 11.8 1 2.7 27 79.4 3 8.8 6 22.2 2 7.4 5 18.5 22 81.5 2 7. Least Normal-i z i n g 1 26 76.5 27 79.4 30 88.3 4 11.8 28 82.4 17 63.0 20 74.1 19 70.4 2 7.4 22 81. T o t a l 34 100 34 100 34 100 34 100 34 100 27 100 27 100 27 100 27 100 27 100 PRE-NOF Nu No. % S] ERVICE CHARACTERISTIC: FEMALE PSYCHOLOGICAL Normal i z a t i o n L e v e l s C r i t e r i a Score LMALIZATIO Ty No. % N: GROUP Na No. % A Lo No. % NORMALI In 1 Nu No. % |No. % ZATION: Ty No. % GROUP B Na NO. % Lo No. % In No. c-Normal-J i z i n g Sub-normal-o i z i n g L east Normal-i z i n g 1 5 100 5 100 5 100 5 100 5 100 4 100 4 100 4 100 4 100 4 JJ)0 T o t a l 5 100 5 100 5 100 5 100 5 100 1 4 100 4 100 4 100 4 100 4 100 Key: Nu: Nature of S e r v i c e Ty: Type of S e r v i c e Na: Name of S e r v i c e Lo: L o c a t i o n of S e r v i c e Table: 24: No. and percentage d i s t r i b u t i o n of s e r v i c e c h a r a c t e r i s t i c scores per l e v e l of n o r m a l i z a t i o n  Female Group A and Group B ( S o c i a l and P s y c h o l o g i c a l S e r v i c e s ) - 181 -much l i k e t h o s e o f male gr o u p s , were e s s e n t i a l l y l e a s t n o r m a l i z -i n g . 76.5% o f t h e n a t u r e o f Group A s o c i a l s e r v i c e s and 63.0% o f t h o s e o f Group B were s c o r e d as d e v i a n t . T h i s t r e n d was a l s o r e f l e c t e d i n t h e s c o r e s f o r t y p e o f s e r v i c e s (Group A 79.4%, Group B 7 4 . 1 % ) , t h e name of t h e s e r v i c e (Group A 88.3%, Group B 70.4%) and the degree o f i n t e g r a t i o n w i t h g e n e r i c com-munity s e r v i c e s (Group A 82.4%, Group B 81.5%). These f i n d i n g s a r e c o n s i s t e n t w i t h t h e k i n d o f s t a t u t o r y arrangement w h i c h has been i n p l a c e f o r handicapped p e r s o n s i n B r i t i s h C o l u m b i a . Under the system, more t h a n 70% o f male and female r e s i d e n t s o f a s s o r t e d community based b o a r d i n g homes, extended c a r e homes, n u r s i n g homes and l o n g term c a r e homes r e c e i v e d o n l y c o m f o r t s a l l o w a n c e s . The b u l k o f t h e i r s o c i a l s e r v i c e s monetary e n t i t l e m e n t s were l a r g e l y a d m i n i s t e r e d from t h e a d m i n i s t r a t i o n o f t h e s e homes, o r r e s i d e n c e s . The Guar-anteed A v a i l a b l e Income f o r Need A c t (Chapter 1.0, p. 33) under w h i c h the Handicapped p e r s o n s Income A s s i s t a n c e b e n e f i t s a re managed i s an e x c l u s i v e s o c i a l l e g i s l a t i o n f o r d i s a b l e d p e r s o n s . T h i s e x p l a i n s why l e s s t h a n 19% o f s o c i a l s e r v i c e s f o r females i n b o t h groups were n o r m a l i z e d (Group A, l e s s t h a n 9%, Group B l e s s t h a n 1 9 % ) . However, t a b l e 24 shows t h a t a h i g h e r p e r c e n t a g e o f Group B female s o c i a l s e r v i c e s were n o r m a l i z e d compared t o Group A female s u b j e c t s (Group A N a t u r e 8.8%, Type 8.8%, Name 8.8%, L o c a t i o n 8.8%, I n t e g r a t i o n 8.8%. Group B, Nature 14.8%, Type - 182 -18.5%, Name 11.1%, L o c a t i o n 11.1% and I n t e g r a t i o n 11.1%). S o c i a l s e r v i c e s f o r b o t h Groups were l o c a t e d i n o f f i c e s w h i c h were s c o r e d as s u b n o r m a l i z i n g (Group A 79.4%, Group B 81.5%). T h i s may be due t o the f a c t t h a t b o t h t h e M i n i s t r y o f Human Resources and the M i n i s t r y o f H e a l t h s h a r e s r e s p o n -s i b i l i t y f o r community b o a r d i n g homes, e s p e c i a l l y o u t s i d e o f the c i t i e s o f Vancouver, N o r t h Vancouver and West Vancouver. P s y c h o l o g y s e r v i c e s (Table 24) were s c o r e d as d e v i a n t o r l e a s t n o r m a l i z i n g s e r v i c e s f o r b o t h female groups. The reasons f o r t h i s f i n d i n g have been s u g g e s t e d as r e l a t i n g t o s c a r c i t y o f independent and p r i v a t e p s y c h o l o g i c a l s e r v i c e s and c o n t i n u e d dependence f o r such s e r v i c e s on Woodlands o r on community m e n t a l h e a l t h c e n t r e s . T a b l e 25 shows t h a t c o n s i d e r a b l e a m b i g u i t y was e x p e r i e n c e d i n i n v o l v i n g m e n t a l l y r e t a r d e d female s u b j e c t s i n r e c r e a t i o n a l a c t i v i t i e s . W h i l e r e c r e a t i o n a l s e r v i c e c h a r a c t e r i s t i c s s c o r e s f o r Group A female s u b j e c t s were l a r g e l y s c o r e d as subnormal-i z i n g (Nature 83.3%, L o c a t i o n 86.7% and I n t e g r a t i o n 80.0%) the s c o r e s f o r Group B female s u b j e c t s were more d i f f u s e d a c r o s s the t h r e e l e v e l s o f n o r m a l i z a t i o n . One e x p l a n a t i o n perhaps r e l a t e s t o g e n e r a l p h i l o s o p h i c a l o r i e n t a t i o n towards i n v o l v e m e n t o f r e t a r d e d persons i n a v a r i e t y o f r e c r e a t i o n a l a c t i v i t i e s and d i f f i c u l t y i n d e f i n i n g the e x t e n t o f the a c t i v i t i e s w i t h o u t o v e r l y b e i n g c o n t r o l l i n g . A n o t h e r e x p l a n a t i o n perhaps r e l a t e s t o i n c r e a s e d a c t i v e p a r -t i c i p a t i o n o f p a r e n t s and r e l a t i v e s i n the a f f a i r s o f t h e i r SERVICE CHARACTERISTIC: FEMALE RECREATIONAL Normal i z a t i o n L e v e l s C r i t e r i a ) Score Nu No. PRE-NORMALIZATION Ty No, Na No. GROUP A % Lo No. In No. NORMALIZATION: % Nu No. Ty No. GROUP B Na No. % Lo No, In No. Normal-i z i n g ^ 2 6.7 3 10.0 24 80.0 3 10.0 2 6.7 6 28.6 5 23.8 12 57.2 10 47.6 3 14.3 Sub-normal-i z i n g 25 83.3 0 0.0 2 6.7 26 86.7 24 80.0 4 19.0 6 28.6 4 19.0 9 42.9 L e a s t Normal-i z i n g ^ 3 10.0 27 90.0 4 13.3 3.3 4 13.3 11 52.4 T o t a l 30 100 30 100 30 100 30 100 30 100 21 100 10 47.6 21 100 5 23.8 21 100 9.5 21 100 4 19.0 14 66.7 21 100 ro CO SERVICE CHARACTERISTIC: FEMALE VOCATIONAL Normal i z a t i o n L e v e l s C r i t e r i a Score PRE Nu No. -NO? % LMALIZATIO Ty No. % N: Na No. GROUP % A Lo NO. % In No. %l NORMALI Nu No. % ZATION: Ty No. % GROUP B Na No. % Lo No. % In NO. Normal-i z i n g 3 5 33.3 4 26.7 5 33.3 2 13.: 2 13.3 2 22.2 2 22.2 2 22.2 3 33.3 2 22 Sub-normal-I z ing 2 3 20.0 2 13.3 2 13.3 4 26.1 1 6.7 3 33.3 1 11.1 2 22.2 1 11.1 1 11 Least Normal-i z i n g 1 7 46.7 9 60.0 8 53.4 9 60.C 12 80.C 4 44.4 6 66.7 5 55.6 5 55.6 6 66 T o t a l 15 100 15 100 15 100 15 100 15 100 100 9 100 9 100 9 100 9 10 Key: Nu: Nature of S e r v i c e Ty: Type of S e r v i c e Na: Name of S e r v i c e Lo: L o c a t i o n of S e r v i c e Table 25: No. and percentage d i s t r i b u t i o n of s e r v i c e c T i a r a c t e r i s t i c scores per l e v e l o f n o r m a l i z a t i o n :  Female Group A and Group B ( R e c r e a t i o n a l and Vo c a t i o n a l ) SERVICE CHARACTERISTIC: FEMALE EDUCATIONAL Normal i z a t i o n L e v e l s C r i t e r i a S c o r e PRE-NOJ Nu No. % IMALIZATIC Ty No. % N: GROUP Na No. % A Lo No. % I n No. % NORMALI Nu No. % ZATION: Ty No. % GROUP B Na No. % Lo No. % I n No. % Normal-i z i n g 3 6 66.7 6 66.7 Sub-no r m a l -i z i n g 2 3 33.3 7 77.8 2 22.2 1 11. L e a s t Normal-i z i n g 1 2 22.2 7 77.8 3 33.3 8 88. T o t a l 0 0 0 0 0 I 9 100 9 100 9 100 9 100 9 100 Key: Nu: N a t u r e o f S e r v i c e T a b l e 25: No. and p e r c e n t a g e d i s t r i b u t i o n o f s e r v i c e » Ty: Type o f S e r v i c e c h a r a c t e r i s t i c s c o r e s p e r l e v e l o f n o r m a l i z a t i o n : H Na: Name o f S e r v i c e Female Group A and Group B ( E d u c a t i o n a l ) i Lo: L o c a t i o n o f S e r v i c e I n : L e v e l o f I n t e g r a t i o n - 185 -r e t a r d e d members a f t e r n o r m a l i z a t i o n p o l i c y was e f f e c t e d i n 1975. 47.6% o f Group B female r e c r e a t i o n a l s e r v i c e s were l o c a t e d i n g e n e r i c community s u r r o u n d i n g s compared t o 10.0% o f Group A female r e c r e a t i o n a l s e r v i c e s . I n g e n e r a l , t h e n a t u r e ( 2 8 . 6 % ) , Type (23.8%) and I n t e g r a t i o n (14.3%) c h a r a c t e r i s t i c s o f Group B female r e c r e a t i o n a l s e r v i c e s were s l i g h t l y more n o r m a l i z e d t h a n t h o s e o f Group A female s u b j e c t s . These p e r c e n t a g e s a re h a r d l y h i g h enough t o j u s t i f y a f i n d i n g o f g r e a t i n c r e a s e s i n the n o r m a l i z i n g c o n t e n t o f Group B female r e c r e a t i o n a l s e r v i c e s , s i n c e t h e e q u i v a l e n t s c o r e s f o r Group A range from 6.7% t o 10.0%. A l t h o u g h t h e name c h a r a c t e r i s t i c o f female r e c r e a t i o n a l s e r v i c e s s c o r e d h i g h (80.0% Group A, 57.2% Group B) n e v e r t h e l e s s , t h e r e were l e s s i n t e g r a t i o n o f s e r v i c e s w i t h n o n - r e t a r d e d a d u l t s i n Group B (66.7%) t h a n i n Group A (.13.3%) . The t r e n d appeared t o be one i n whi c h a n o r m a l i z e d name was g i v e n t o a r e c r e a t i o n -a l Group B s e r v i c e and a l l o t h e r s e r v i c e c h a r a c t e r i s t i c s were t r e a t e d i n d e v i a n t ways. The o b s e r v e d d i f f e r e n c e s i n t h e two groups were n o t un-ex p e c t e d . 90% d e v i a n c y i n t h e ty p e o f Group A r e c r e a t i o n a l a c t i v i t i e s had been reduced t o 47.6% f o r Group B female sub-j e c t s . The c o n c e n t r a t i o n o f Group A s c o r e s a t the sub-normal-i z i n g l e v e l s o f n o r m a l i z a t i o n had become d i f f u s e d f o r a l l t h r e e s c o r e level ' s i n Group B s u b j e c t s . However, an i m p o r t a n t p o i n t has been t h a t t h e h i g h e r p e r c e n t a g e s o f l e a s t n o r m a l i z -i n g r e c r e a t i o n a l s e r v i c e c h a r a c t e r i s t i c s i s c o n c e n t r a t e d i n Group B s e r v i c e s . - 186 -V o c a t i o n a l s e r v i c e s f o r females i n Groups A and B were l e a s t n o r m a l i z i n g i n nature (Group A 46.7%, Group B 44.4%), Type (Group A 60.0%, Group B 66.7%), Name (Group A 53.4%, Group B 55.6%, L o c a t i o n (Group A 60.0%, Group B 55.6%, and I n t e g r a t i o n (Group A 80.0%, Group B 66.7%). From these percentages, one could make the o b s e r v a t i o n t h a t o v e r a l l , v o c a t i o n a l s e r v i c e s f o r females, as f o r males were e s s e n t i a l l y d e v i a n t i n the f i v e scored c h a r a c t e r i s t i c s . Except f o r the l o c a t i o n of v o c a t i o n a l s e r v i c e (Group A 13.3%, Group B 33.3%) the percentage o f normalized c h a r a c t e r i s t i c s of nature, type and name decreased from Group A percentages. N e v e r t h e l e s s , l e s s than 35% of Group A V o c a t i o n a l s e r v i c e c h a r a c t e r i s t i c s , and l e s s than 25% of Group B v o c a t i o n a l s e r v i c e c h a r a c t e r i s t i c s were normalized. These f i n d i n g s were not unexpected i n view of d i f f i c u l t i e s w i t h o b t a i n i n g on the job v o c a t i o n a l t r a i n i n g f o r m e n t a l l y r e -tarded a d u l t s . A l s o , the f a c t t h a t most of the a v a i l a b l e v o c a t i o n a l s e r v i c e s were e x c l u s i v e l y f o r mental r e t a r d a t i o n or other handicapped groups and graduates r a r e l y advance t o r e g u l a r type s e r v i c e s . E d u c a t i o n a l s e r v i c e was not p r o v i d e d f o r Group A female s u b j e c t s (Table 25). 66.7% of the nature and l o c a t i o n o f e d u c a t i o n a l s e r v i c e s f o r Group B female s u b j e c t s were normal-i z e d . 77.8% o f the s e r v i c e s were subnormalizing i n type, and 77.8% were d e v i a n t i n name. 88.9% of a l l e d u c a t i o n a l s e r v i c e s f o r Group B female s u b j e c t s were not i n t e g r a t e d w i t h e d u c a t i o n a l - 187 -s e r v i c e s f o r n o n - m e n t a l l y r e t a r d e d a d u l t s . These p e r c e n t a g e s a r e c o n s i s t e n t w i t h t h o s e o f male Group B s u b j e c t s . I n g e n e r a l , t h e r e was ambivalence w i t h r e s p e c t t o how much n o r m a l i z a t i o n was needed i n e d u c a t i o n a l s e r v i c e s . 5.2 Summary o f E m p i r i c a l R e s u l t s The major f i n d i n g s from the d a t a p r e s e n t e d above a r e as f o l l o w s : (a) 74% o f n o r m a l i z a t i o n Group B s u b j e c t s had t h e i r r e l a t i v e s as g u a r d i a n s compared t o 63% o f p r e - n o r m a l i z a t i o n Group A s u b j e c t s . The r e a s o n f o r t h i s d i f f e r e n c e has been sug-g e s t e d as the i n c r e a s e d i n t e r e s t o f p a r e n t s and r e l a t i v e s i n t h e w e l f a r e o f t h e i r r e t a r d e d members. T h i s i n c r e a s e has been s u g g e s t e d as r e s u l t i n g from t h e s o c i a l d e f i n i t i o n o f m e n t a l r e t a r d a t i o n w h i c h t h e v o l u n t e e r s e c t o r has been a b l e t o p r o j e c t t h r o u g h p u b l i c media s i n c e 1975. However, more females had been wards o f s t a t e i n b o t h groups. There i s no ready e x p l a n a t i o n f o r t h i s f i n d i n g . (b) There i s no d i f f e r e n c e i n t h e p e r c e n t a g e o f s e l f d i s -c h arged a d u l t s i n b o t h Groups (Group A 11.4%, Group B 10.5%). I t had been e x p e c t e d t h a t a h i g h e r p e r c e n t a g e o f Group B s u b j e c t s would d i s c h a r g e themselves from Wood-l a n d s f o l l o w i n g t h e i n t r o d u c t i o n o f t h e s o c i a l system o f s e r v i c e as p o l i c y d i r e c t i o n . However, a s l i g h t l y h i g h e r p e r c e n t a g e o f Group B female s u b j e c t s were r e c o r d e d as s e l f - d i s c h a r g e d . - 188 -(c) S i g n i f i c a n t l y h i g h percentages of a d u l t s i n both groups were d i s c h a r g e d to communities o t h e r than the one which had been recorded as t h e i r home communities or at l e a s t as admission communities (Group A 87.7%, Group B 79.8%). T h e r e f o r e , i r r e s p e c t i v e of p o l i c y change, a s i g n i f i c a n t percentage of r e t a r d e d a d u l t s from Woodlands were d i s -charged t o s e v e r a l o t h e r communities other than t h e i r own. One e x p l a n a t i o n c o u l d be t h a t there are inadequate community resources i n t h e i r own communities w i t h which t o address t h e i r needs. T h e r e f o r e , they were simply s l o t t e d t o a v a i l a b l e community r e s i d e n c e s w i l l i n g t o accept them. Another e x p l a n a t i o n c o u l d be t h a t t h e i r guardians and r e l a t i v e s d i d not wish t h e i r r e t u r n t o home communities. The l a t t e r e x p l a n a t i o n i s probable i n view o f the f a c t t h a t n e a r l y a l l the female s u b j e c t s i n both groups had gu a r d i a n s h i p . Yet, many of the female s u b j e c t s were d i s -charged to oth e r than t h e i r home communities. Neverthe-l e s s , a more l i k e l y e x p l a n a t i o n c o u l d be t h a t both f a c t o r s of inadequacy of l o c a l r e s o u r c e s and r e j e c t i o n were r e s -p o n s i b l e f o r t h i s f i n d i n g . (d) There was no d i f f e r e n c e i n e i t h e r the average age a t d i s -change or the l e n g t h of i n s t i t u t i o n a l i z a t i o n i n years f o r both groups. However female s u b j e c t s i n both groups had hi g h e r average s o c i a l ages than males, but o v e r a l l , the s l i g h t percentage d i f f e r e n c e between both groups - male and female combined - i s not c o n s i d e r e d s i g n i f i c a n t (11.3% Group A, 10.5% Group B). On the b a s i s of these percentage - 189 -f i g u r e s , one may not a t t r i b u t e any group d i f f e r e n c e s i n s e r v i c e s t o e i t h e r average age a t d i s c h a n g e o r l e n g t h o f i n s t i t u t i o n a l i z a t i o n o r s o c i a l age. (e) On t h e average 78.5% o f Group A needs and 79.8% o f Group B needs were i d e n t i f i e d and p r o v i d e d w i t h s e r v i c e s i n the community. A l s o more t h a n 85.0% o f a l l community based s e r v i c e s w h i c h were made a v a i l a b l e t o b o t h groups were a d d i t i o n a l s e r v i c e s . W i t h r e s p e c t t o Group B, t h e p e r -centage o f a d d i t i o n a l s e r v i c e s exceeded t h a t o f i d e n t i f i e d n e e d s / s e r v i c e s . T h i s f i n d i n g s u b s t a n t i a t e s t h e h y p o t h e s i s t h a t community s e r v i c e s were i n a d e q u a t e f o r meetin g t h e needs o f b o t h groups. (f) The m a j o r i t y o f a l l s u b j e c t s i n b o t h groups were d i s c h a r g e d t o b o a r d i n g homes (Over 65% Group A and over 50% Group B ) . However, t h e r e were new community r e s i d e n t i a l a l t e r n a t i v e s f o r Group B s u b j e c t s w h i c h accounted f o r some r e d u c t i o n i n t h e p e r c e n t a g e o f b o a r d i n g home r e s i d e n t s . Subsequent n o r m a l i z a t i o n d a t a i n d i c a t e d t h a t t h e s e a l t e r n a t i v e r e s i -d e n t i a l homes were m o s t l y l e a s t n o r m a l i z i n g . 94% of t h e b o a r d i n g homes were p r i v a t e l y o p e r a t e d f o r commercial p u r p o s e s . (g) The h i g h e s t p e r c e n t a g e o f unmet n e e d s / s e r v i c e s was i n t h e a r e a o f v o c a t i o n a l s e r v i c e s (over 40% f o r males and females i n each g r o u p ) . A l l i d e n t i f i e d s o c i a l s e r v i c e needs were met. However, o v e r 40% o f a l l a d d i t i o n a l s e r v i c e s f o r - 190 -both groups and sexes was i n the area of s o c i a l needs/ s e r v i c e s . Next i n percentage of a d d i t i o n a l s e r v i c e s was i n the area of medical needs (Tables 5, 6, 7, 8). I t has been suggested t h a t perhaps, more s o c i a l needs/problems were i d e n t i f i e d a f t e r d i s c h a r g e of s u b j e c t s from Woodlands. However, the h i g h percentage of a d d i t i o n a l medical s e r v i c e s was not expected. (h) Over 60% o f a l l s u b j e c t s were c l a s s i f i e d as s e v e r e l y or p r o f o u n d l y r e t a r d e d i n both groups. A l s o the m a j o r i t y of s u b j e c t s were w i t h i n the s o c i a l age of 6 to 10 years f o r both groups. Thus, a t y p i c a l d e - i n s t i t u t i o n a l i z e d a d u l t from Woodlands would be an a d u l t who would l i k e l y possess an i n t e l l e c t u a l l e v e l i n the severe/profound r e t a r d a t i o n range and whose s o c i a l age was i n the area of 6 to 10 y e a r s . However, 38.6% o f a l l s u b j e c t s were e i t h e r o f normal i n -t e l l i g e n c e , or of m i l d to moderate i n t e l l e c t u a l l e v e l s . No major d i f f e r e n c e s were observed i n the two groups. (i) On the average, a l l community based s e r v i c e s were found to be d e v i a n t or l e a s t n o r m a l i z i n g f o r both groups and sexes (Group A 43.7%, Group B.47.4%). Only 22.9% of Group A s e r v i c e s and 26.4% of Group B s e r v i c e s were scored as n o r m a l i z i n g . The remainder of the s e r v i c e s s t r a d d l e d the boundary between n o r m a l i z i n g and d e v i a n t i z -i n g . T h i s g e n e r a l p a t t e r n was maintained f o r both groups and sexes. S p e c i f i c a l l y , a l l p s y c h o l o g i c a l s e r v i c e s were l e a s t n o r m a l i z i n g . There were no e d u c a t i o n a l s e r v i c e s f o r Group A male and female s u b j e c t s . The extent of - 191 -n o r m a l i z a t i o n v a r i e d from one s e r v i c e t o the o t h e r . F o r example w h i l e m e d i c a l s e r v i c e s were more n o r m a l i z i n g t h a n s o c i a l s e r v i c e s . F u r t h e r e x a m i n a t i o n r e v e a l e d an i m b a l -ance i n t h e c o n t e n t o f n o r m a l i z a t i o n f o r v a r i o u s s e r v i c e c h a r a c t e r i s t i c s . F o r example, r e c r e a t i o n a l s e r v i c e s were h i g h l y n o r m a l i z e d i n t h e c h a r a c t e r i s t i c o f name, b u t h i g h l y d e v i a n t i n i n t e g r a t i o n w i t h n o n - r e t a r d e d members o f t h e community. T h i s p a t t e r n was f a i r l y c o n s i s t e n t b u t v a r i e d o n l y i n p a r t i c u l a r , s e r v i c e c h a r a c t e r i s t i c s such as n a t u r e , t y p e o r l o c a t i o n . 5.3 P o l i c y A n a l y s i s The e m p i r i c a l d a t a w h i c h has been p r e s e n t e d above have n ot been s u b j e c t e d t o minute o r d e t a i l e d a n a l y s i s , but are i n t e n d e d t o p r o v i d e some i n s i g h t t o the p r o c e s s o f p o l i c y development i n the a r e a o f m e n t a l r e t a r d a t i o n i n G r e a t e r Vancouver Regions. The methodology used i n g a t h e r i n g e m p i r i c a l d a t a d i d not c a l l f o r w i d e r g e n e r a l i z a t i o n s i n view o f t h e s u b j e c t i v e n a t u r e o f i m p l i c i t and e x p l i c i t judgement o f n o r m a l i z a t i o n c r i t e r i a . T h e r e f o r e t h e e m p i r i c a l d a t a have been p r e s e n t e d i n t a b u l a r and p e r c e n t a g e forms t o e n a b l e v i s u a l comparisons t o be made. Having s e r v e d t h i s p u r p o s e , i t has become n e c e s s a r y t o i n t e g r a t e t h e i n f o r m a t i o n i n t o a framework f o r p o l i c y a n a l y s i s . I n C h a p t e r 3.0, t h e c o n c e p t u a l framework f o r p o l i c y a n a l y s i s i s d e s c r i b e d . K e r r (1976a) p r o v i d e s f o u r c o n d i t i o n s w h i c h may be used i n t h e a n a l y s i s o f e d u c a t i o n a l p o l i c y (Chap-t e r 3.0, pp. 106-107). - 192 -C o n d i t i o n 1. Some a u t h o r i z i n g agent (Aa) o b l i g a t e s i t s e l f t o d i r e c t some im p l e m e n t i n g agent (Ai) t o a c t i n a c c o r d w i t h some s p e c i f i e d c o n d i t i o n a l i m p e r a t i v e ( I ) . W i t h r e s p e c t t o t h e p o l i c y o f N o r m a l i z a t i o n o f S e r v i c e s f o r m e n t a l l y r e t a r d e d p e r s o n s i n B r i t i s h C o lumbia, the a u t h o r -i z i n g agent (Aa) would be the Government o f B r i t i s h Columbia v i a t h e M i n i s t r y o f Human Re s o u r c e s . The form o f a u t h o r i z a t i o n f o r t h i s p a r t i c u l a r s o c i a l p o l i c y can be found i n t h e Annual R e p o r t s o f t h e M i n i s t r y , and i n subsequent p o l i c y d i r e c t o r i e s d e s i g n e d t o e f f e c t t h e p o l i c y o f n o r m a l i z a t i o n . The t r a n s f e r o f r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n from M i n i s t r y o f H e a l t h t o M i n i s t r y o f Human Resources was a c h i e v e d by way o f amendment o f t h e M e n t a l H e a l t h A c t . There was no subsequent l e g i s l a t i o n o r s t a t u t e w h i c h l e g i t i m i z e s o r l e g a l -i z e s n o r m a l i z a t i o n as p o l i c y as has been done i n the S c a n d i n -a v i a n C o u n t r i e s (Chapter 2.0, p. 3 4 ) . T h e r e f o r e , o n l y b road p o l i c y s t a t e m e n t s i n t h e 1975 A n n u a l r e p o r t o f the M i n i s t r y of Human Resources gave i n d i c a t i o n s o f t h e a d o p t i o n o f normal-i z a t i o n as a p r i n c i p l e . I n the l e g a l sense t h e r e f o r e , normal-i z a t i o n i s a p r i n c i p l e and not a p o l i c y ( D & vorkin, 1977, a l s o see C h a p t e r 3.0., p. 104-105). K e r r (1977a) t a k e s t h e view t h a t when a d e c i s i o n r e g a r d i n g what i s t o be done i s y e t t o be made, i t would seem more c o r r e c t t o say t h a t a p r i n c i p l e has been adopted f o r w h i c h a p o l i c y m ight be d e c i d e d . The Annual R e p o r t o f t h e M i n i s t r y o f Human Resources m e r e l y s t a t e d the g o a l s and g u i d i n g p r i n c i p l e s o f the M i n i s t r y t o p r o v i d e t h e o p p o r t u n i t y f o r e v e r y m e n t a l l y r e t a r d e d p e r s o n t o a c h i e v e h i s o r h e r maximum p o t e n t i a l . . . . o p p o r t u n i t y t o l i v e w i t h own f a m i l y o r i n h i s o r h e r community and t o p a r t i c i p a t e f u l l y i n community l i f e . . . . o p p o r t u n i t y t o engage i n m e a n i n g f u l o c c u p a t i o n . ...a r i g h t t o economic o p p o r t u n i t y . The above s t a t e m e n t s do not c o n s t i t u t e s p e c i f i c a u t h o r i z -a t i o n f o r the i m p l e m e n t a t i o n o f n o r m a l i z a t i o n " p o l i c y . " There are no i d e n t i f i a b l e i m p l e m e n t i n g agents (Ai) and no c l e a r l y d e f i n e d a u t h o r i z i n g Agent (Aa). Moreover, no s p e c i f i e d con-d i t i o n a l i m p e r a t i v e s (I) can be i d e n t i f i e d . Thus, t h e i n i t i a l a t tempt by the M i n i s t r y o f Human Resources t o " n o r m a l i z e t h e l i v e s o f m e n t a l l y r e t a r d e d p e r s o n s i n B r i t i s h Columbia" does not meet C o n d i t i o n 1 o f K e r r ' s p o l i c y a n a l y s i s . From e m p i r i c a l d a t a , i t has been demonstrated t h a t com-munity s e r v i c e s f o r m e n t a l r e t a r d a t i o n has been l a r g e l y unco-o r d i n a t e d . T h e r e f o r e t h e r e has been h i g h p e r c e n t a g e s o f unmet s e r v i c e needs and a paradox s i t u a t i o n i n whi c h a d d i t i o n a l com-munity s e r v i c e s were i d e n t i f i e d i n a r e a s where t h e s e s e r v i c e s had n o t been i d e n t i f i e d as n e c e s s a r y . D e - i n s t i t u t i o n a l i z e d a d u l t s c o u l d n o t be r e t u r n e d t o t h e i r home communities and the i d e n t i f i e d needs a t time o f d i s c h a r g e came t o be a t v a r i -ance w i t h a c t u a l needs i n t h e community. The consequence has been f o r p r o f e s s i o n a l c a r e g i v e r s t o d e s i g n whatever system o f 1. Annual R e p o r t o f t h e Department o f Human Resources: 1975 M. 90. - 194 -s e r v i c e d e l i v e r y t h a t s u i t s t h e i r p u r p o s e s . G i l (1976) o b s e r v e s t h a t a consequence o f poor l i n k a g e between p o l i c y r e q u i r e m e n t s and e m p i r i c a l d a t a i s the l a c k o f correspondence between p o l i c y s p e c i f i c a t i o n s and community r e -q u i r e m e n t s , o r between v a l u e p o s i t i o n s . The l a t t e r i s e x e m p l i -f i e d by t h e p e r i o d i c media d i a l o g u e between the v o l u n t e e r s e c -t o r and o f f i c i a l s o f t h e M i n i s t r y o f Human Resources. A l t h o u g h b o t h s i d e s i n t h e d i a l o g u e agree i n p r i n c i p l e r e g a r d i n g "normal-i z a t i o n , " y e t , the l a c k o f s p e c i f i c a t i o n s i n p o l i c y f o r i m p l e -m e n t a t i o n work t o t h e d i s a d v a n t a g e o f m e n t a l l y r e t a r d e d p e r s o n s . C o n d i t i o n 2 s t a t e s t h a t t h e c o n d i t i o n a l i m p e r a t i v e (I) must be o f the form t o do something w h i c h counts as some s p e c i f i e d X - i n g , w i t h o u t e x c e p t i o n , s p e c i f i e d c o n d i t i o n s (C) o c c u r . T h i s c o n d i t i o n p r o v i d e s a b a s i s f o r t e s t i n g a p o l i c y r e -q u i r e m e n t . I n 1974, t h e s i t u a t i o n was such t h a t r e s i d e n t s o f i n s t i t u t i o n s such as Woodlands were asked t o d i s c h a r g e them-s e l v e s i f t h e y w i s h e d a t t h e age o f 19. I f K e r r ' s second c o n d i t i o n were t o h o l d , t h e r e would have been s p e c i f i c s e r v i c e r e a c t i o n i n p l a c e . I n o t h e r words, as t h e X - i n g , t h a t i s t h e d i s c h a r g e s o c c u r r e d , the p o l i c y would have s p e c i f i e d how de-i n s t i t u t i o n a l i z e d a d u l t s would be p r o v i d e d w i t h immediate s e r v i c e s and/or o p p o r t u n i t i e s w i t h w h i c h t o meet the g o a l s o f t h e M i n i s t r y . A l t h o u g h , t h e i d e a o f n o r m a l i z a t i o n d i d n o t r a d i c a l l y d e p o p u l a t e Woodlands, y e t , e m p i r i c a l d a t a has shown t h a t t h e r e were no major changes i n t h e d i r e c t i o n o f s e r v i c e d e l i v e r y . The p r e - n o r m a l i z a t i o n group d i d n o t d i f f e r from - 195 -the n o r m a l i z a t i o n group r e g a r d i n g the use of p r i v a t e l y operated, commercial boarding homes. Moreover, the M i n i s t r y of Hea l t h , v i a the Mental H e a l t h S e r v i c e s D i v i s i o n r e t a i n e d the duty of s u p e r v i s i n g commercial boarding homes j u s t as be f o r e the i n -t r o d u c t i o n o f n o r m a l i z a t i o n " p o l i c y . " E x c e p t i o n s were made i n c e r t a i n j u r i s d i c t i o n s such as i n the C i t y of Vancouver, con-t r a r y to the s p e c i f i c i a t i o n s o f C o n d i t i o n 2. E m p i r i c a l data has demonstrated the random a p p l i c a t i o n o f l e v e l s of normal-i z a t i o n to the c h a r a c t e r i s t i c s o f s e r v i c e s . The subsequent p r o v i s i o n of broad a d m i n i s t r a t i v e guide-2 l i n e s such as the 1980 Inventory o f S e r v i c e s t o guide the l i c e n c i n g and o p e r a t i o n of r e s i d e n t i a l s e r v i c e s , was an attempt to c o o r d i n a t e community s e r v i c e s . In time, i t w i l l become ap-parent whether these measures are s u c c e s s f u l without a base-l i n e o f l e g i t i m a t i o n , a u t h o r i z a t i o n and s p e c i f i c a t i o n . C o n d i t i o n 3 s t a t e s t h a t the a u t h o r i z i n g agent (Aa) under-takes the o b l i g a t i o n ( C o n d i t i o n 1) f o r the purpose of e f f e c t -i n g some s p e c i f i e d s t a t e o f a f f a i r s (S) and to do so without v i o l a t i n g any r e s t r i c t i v e r u l e s (R) by which (Aa) would c l a i m to abide. Under C o n d i t i o n 3, the Government of B r i t i s h Columbia, through the M i n i s t r y of Human Resources o b l i g a t e s i t s e l f or 2. Inventory o f S e r v i c e s : S e r v i c e s to Handicapped C h i l d r e n and A d u l t s . M i n i s t r y of Human Resources, 1980. - 196 -commits i t s e l f t o t h e r e a l i z a t i o n o f the n o r m a l i z a t i o n o f men t a l r e t a r d a t i o n s e r v i c e s . K e r r (1977a) makes the p o i n t t h a t t h e a u t h o r i z i n g agent (Aa) s h o u l d observe a l l the r u l e s and s t a n d a r d s i t has s e t f o r the i m p l e m e n t i n g agent (Ai) w h i l e e f f e c t i n g some s p e c i f i e d s t a t e o f a f f a i r s ( S ) . The p r e s e n t s t u d y does n o t ad d r e s s the q u e s t i o n o f t h e n o r m a l i z a t i o n o f government-provided r e t a r d a t i o n s e r v i c e s . Community S e r v i c e s w h i c h have been s c o r e d f o r n o r m a l i z a t i o n c o n t e n t have been l a r g e l y a d m i n i s t e r e d by t h e v o l u n t e e r s e c t o r , p r i v a t e i n d i v i d u a l s and j o i n t l y by t h e government and t h e v o l -u n t e e r s e c t o r . N e v e r t h e l e s s , i t may be assumed t h a t K e r r ' s t h i r d c o n d i t i o n i s n o t a p p l i c a b l e i n t h i s s t u d y . C o n d i t i o n 4 s t a t e s t h a t t h e a u t h o r i z i n g agent's o b l i g a t i o n can be r e v i s e d and y e t n o t be v i o l a t e d b o t h i f the a u t h o r i z i n g agent announces h i s r e v i s i o n o f t h e c o n d i t i o n a l i m p e r a t i v e from I t o I t o t h o s e p e r s o n s who can b r i n g about c o n d i t i o n s C t o C, and i f t h e a u t h o r i z i n g agent g i v e s c o n s i d e r a t i o n due the views o f the r e l e v a n t p u b l i c as d e f i n e d by t h e p o l i t i c a l and m o r a l c o n t e x t s o f t h e i n i t i a l p o l i c y d e c i s i o n and i t s r e v i s i o n . C o n d i t i o n 4 r a i s e s t h r e e i m p o r t a n t q u e s t i o n s : The f i r s t r e l a t e s t o t h e r e v i s i o n o f p o l i c y . The second r e l a t e s t o p o l i t i c s and t h e views o f r e l e v a n t p u b l i c . The t h i r d r e l a t e s t o m o r a l i s s u e s . - 197 -W i t h r e s p e c t t o the p o l i c y r e v i s i o n , t h e r e has been no i n d i c a t i o n t h a t t h e a u t h o r i z i n g agent, t h a t i s t h e Government o f B r i t i s h C o l u m b i a , has a t t e m p t e d t o v i s i b l y r e v i s e the s t a t e d o b j e c t i v e s o f n o r m a l i z a t i o n . I f i n d e e d , t h e r e has been some o v e r t r e v i s i o n o f o b j e c t i v e s , i t has not been v i s i b l e i n t h e p r o c e s s o f d e l i v e r y o f s e r v i c e s . E m p i r i c a l d a t a i n d i c a t e t h a t , i n f a c t , the c o n t e n t o f n o r m a l i z a t i o n f o r b o t h the p r e - n o r m a l -i z a t i o n group and t h e n o r m a l i z a t i o n group a r e e s s e n t i a l l y s i m i l a r up t o 1979. The i m p o r t a n t o b s e r v a t i o n has been t h a t a c o n t i n u o u s l i n k a g e has been m a i n t a i n e d , a t l e a s t s t r u c t u r -a l l y , w i t h the m e d i c a l model o f c a r e . T h i s f a c t , negates th e n o t i o n t h a t a r e v i s i o n o f p o l i c y has i n d e e d o c c u r r e d even though a p o l i c y t r a n s i t i o n has been s t a t e d . The second i m p l i c a t i o n o f the f o u r t h c o n d i t i o n r e l a t e s t o p u b l i c and p o l i t i c a l q u e s t i o n s . The i s s u e seems t o h i n g e on (a) p u b l i c a t t i t u d e as a f a c t o r i n p o l i t i c a l d e c i s i o n s and (b) the a v a i l a b i l i t y o f r e s o u r c e s w i t h w h i c h t o implement n o r m a l i z a t i o n p o l i c y . T h i s s t u d y does not a d dress q u e s t i o n s o f p u b l i c a t t i t u d e nor the d i s t r i b u t i o n o f r e s o u r c e s . However, i t s h o u l d be n o t e d t h a t p u b l i c i n t e r e s t and a t t i t u d e a r e neces-s a r y i n t e r v e n i n g f a c t o r s i n p o l i t i c a l d e c i s i o n s i n t h e f r e e w o r l d . W h i l e t h e p u b l i c i s s y m p a t h e t i c t o i s s u e s o f h a n d i c a p i n g e n e r a l , t h e r e i s no e v i d e n c e t h a t c o n c e r n f o r t h e p l i g h t o f r e t a r d e d p e r s o n s i n t h e community has been s u f f i c i e n t t o i n v o l v e m assive commitment o f r e s o u r c e s . R a t h e r , i t would appear t h a t p u b l i c a t t i t u d e towards r e t a r d e d p e r s o n s i n G r e a t e r Vancouver Regions has been o n l y t o the e x t e n t o f media - 198 -p r e s s u r e w h i c h has l a r g e l y been s u p p o r t e d by advocate groups. The d e c i s i o n t o a c t i n one way o r a n o t h e r i s u l t i m a t e l y a p o l i t i c a l d e c i s i o n . N o r m a l i z a t i o n " p o l i c y " w i l l be l e g i t i m i z e d from p r i n c i p l e t o p o l i c y i f t h e r e i s s u f f i c i e n t p u b l i c i n t e r e s t i n f a v o u r o f l e g i t i m a t i o n . The m o r a l a s p e c t o f C o n d i t i o n 4 i s an i n d i v i d u a l one, and may be r e l a t e d t o a t t i t u d e and o r i e n t a t i o n . The b a s i s o f n o r m a l i z a t i o n p r i n c i p l e i s e s s e n t i a l l y m o r a l as w e l l as p h i l o -s o p h i c a l . G i l (1976) reminds us o f t h e d e l i c a t e i n t e r f a c e between p o l i c y and v a l u e s and t h e corr e s p o n d e n c e between con-sequences o f p o l i c y and g e n e r a l r e q u i r e m e n t s o f s o c i e t y . The p o i n t has been made e a r l i e r r e g a r d i n g the c o n t i n u e d i n s t i t u t i o n a l i z a t i o n o f m e n t a l l y r e t a r d e d a d u l t s on the b a s i s o f i n a b i l i t y t o a d j u s t t o t h e demands o f contemporary s o c i e t y . From t h e e m p i r i c a l d a t a , i t has been shown t h a t the m a j o r i t y o f s u b j e c t s had s o c i a l age i n the range o f 6 y e a r s t o 10 y e a r s . S h o u l d such an i n d i v i d u a l be s u b j e c t e d t o the c o m p l e x i t i e s o f modern s o c i e t y w i t h o u t some measure o f s a f e g u a r d f o r h i s o r her p e r s o n a l s a f e t y and s u r v i v a l ? A l t e r n a t i v e l y , s h o u l d t h e i n -d i v i d u a l be p e r p e t u a l l y i n s t i t u t i o n a l i z e d o r t r e a t e d d e v i a n t l y because o f h i s i n a b i l i t y t o meet s o c i a l e x p e c t a t i o n s ? When th e s e q u e s t i o n s are c r o s s matched w i t h human r i g h t s , m o r a l q u e s t i o n s a r e r a i s e d . I t i s t h e r e f o r e n ot s u r p r i s i n g t h a t i n the p r o c e s s c e r t a i n s t r a t e g i e s have been d e v e l o p e d by segments of t h e s o c i e t y . As n o t e d i n C h a p t e r 1.0, i t may be t o t h e i n t e r e s t o f p r o f e s s i o n a l c a r e g i v e r s t o m a i n t a i n c u s t o d i a l o r d e v i a n t s e r v i c e s . T h e r e f o r e , t h e y o p t t o a c t t o p r o t e c t t h e i r - 199 -b e l i e f i n t h e i n c u r a b i l i t y o f m e n t a l r e t a r d a t i o n t h u s p r o -t e c t i n g t h e i r employment. On the o t h e r hand, a d v o c a t e s , whose major e x p e r i e n c e has been w i t h a m e n t a l l y r e t a r d e d r e l a t i v e , would l i k e t o equate a l l forms o f r e t a r d a t i o n t o t h e i r b a s i c e x p e r i e n c e , i r r e s p e c t i v e o f o t h e r problems. I n c o n c l u s i o n , t h e r e s u l t s o f t h i s s t u d y s u p p o r t t h e h y p o t h e s i s t h a t t h e r e i s no d i f f e r e n c e i n the n o r m a l i z a t i o n c o n t e n t o f s e r v i c e s used t o a d dress t h e needs of m e n t a l l y r e -t a r d e d a d u l t s , b e f o r e and a f t e r t h e i n t r o d u c t i o n o f n o r m a l i z -a t i o n as " p o l i c y . " F u r t h e r m o r e , the needs o f d e - i n s t i t u t i o n a l i z e d a d u l t s have not been met a d e q u a t e l y by s e r v i c e s used t o address them. More i m p o r t a n t l y , u s i n g K e r r ' s framework f o r p o l i c y a n a l -y s i s , i t has been found t h a t N o r m a l i z a t i o n i s a p r i n c i p l e r a t h e r t h a n a p o l i c y because i t does n o t meet any o f K e r r ' s c o n d i t i o n s f o r p o l i c y , e s p e c i a l l y w i t h r e s p e c t t o l e g i s l a t i o n and s p e c i f i c -a t i o n o f i m p l e m e n t a t i o n c h a r a c t e r i s t i c s . - 200 -CHAPTER 6.0 SUMMARY, CONCLUSIONS AND IMPLICATIONS T h i s C h a p t e r b e g i n s w i t h a summary w h i c h r e v i e w s th e p u r p o s e , th e c o n c e p t u a l framework, methodology and f i n d i n g s o f t h e s t u d y . Second, i t p r e s e n t s c o n c l u s i o n s , some c o n c e r n -i n g e m p i r i c a l d a t a and some c o n c e r n i n g n o r m a l i z a t i o n p o l i c y . F i n a l l y , i t moves i n t o the i m p l i c a t i o n s f o r n o r m a l i z a t i o n p o l i c y and f o r f u r t h e r s t u d y . 6.1 Summary A b a s i c purpose o f t h e s t u d y was t o e x p l o r e t h e n a t u r e o f n o r m a l i z a t i o n o f s e r v i c e s f o r p r e v i o u s l y i n s t i t u t i o n a l i z e d m e n t a l l y r e t a r d e d a d u l t s from Woodlands I n s t i t u t i o n . T h i s purpose has been a c h i e v e d t h r o u g h e m p i r i c a l d a t a w h i c h gener-a l l y show t h a t s e r v i c e s have been e s s e n t i a l l y d e v i a n t and c o n s i s t e n t f o r t h e two groups o f s u b j e c t s s t u d i e d . The s t u d y a l s o shows t h a t v a r y i n g l e v e l s o f n o r m a l i z a t i o n have been a p p l i e d s e l e c t i v e l y t o p a r t i c u l a r c h a r a c t e r i s t i c s o f s e r v i c e s i n a more o r l e s s random manner. I n d e f i n i n g n o r m a l i z a t i o n w i t h i n the G r e a t e r Vancouver R e g i o n , e x p l i c i t and i m p l i c i t judgement o f p r o f e s s i o n a l s and c i t i z e n s were used t o d e v e l o p measurement c r i t e r i a . T h e r e f o r e the f i n d i n g s o f t h i s s t u d y a r e l i m i t e d t o G r e a t e r Vancouver Regions o f B r i t i s h Columbia and t h e s p e c i f i c a t i o n s o f the s t u d y . A n o t h e r o b j e c t i v e o f t h e s t u d y has been t o examine the - 201 -relationship between Community-based Services and i n d i v i d u a l needs of d e - i n s t i t u t i o n a l i z e d adults from Woodlands. Using empirical data, i t has been shown that a high percentage of additional services were provided to meet community needs for whatever reasons. Also, a proportion of i d e n t i f i e d needs were not provided with services. More importantly was the finding that lack of coordination exists i n the delivery of services and i d e n t i f i c a t i o n of needs. The study also aimed at providing data to aid decision makers i n planning community based services. To achieve t h i s , a l l of the empirical data have been tabulated i n numbers and percentages to enable alternative analysis and inference from them. Las t l y , the p o l i c y of normalization has been analysed under an integrated framework. Thus, portions of empirical data has been used to support aspects of policy analysis. It has been found that normalization may not i n fact be regarded as government po l i c y towards mental retardation issues but a p r i n c i p l e at best for which no s p e c i f i c implementation has been stated except as broad objectives. Thus, a l l of the stated objectives for t h i s study have been achieved, and hypotheses supported. In the process, conceptualizations of normalization, of p o l i c y , and of method-ology have been borrowed from the f i e l d s of education and medicine. - 202 -6.2 C o n c l u s i o n s From the s t u d y , t h e f o l l o w i n g g e n e r a l c o n c l u s i o n s may be made: (a) That i n s p i t e o f t h e t r a n s f e r o f r e s p o n s i b i l i t y f o r m e n t a l r e t a r d a t i o n from t h e M i n i s t r y o f H e a l t h t o t h e M i n i s t r y o f Human Re s o u r c e s , t h e p r o c e s s o f s e r v i c e d e l i v e r y r e -mained e s s e n t i a l l y the same. Changes i n t e r m i n o l o g y o r t h e i n t r o d u c t i o n o f new forms o f s e r v i c e s have not r e -f l e c t e d s i g n i f i c a n t changes i n d i r e c t i o n o r " p o l i c y " a t l e a s t w i t h i n t h e G r e a t e r Vancouver R e g i o n s . (b) S e r v i c e s w h i c h had been used t o address t h e i d e n t i f i e d needs of d e - i n s t i t u t i o n a l i z e d r e t a r d e d a d u l t s a f t e r d i s -charge had been i n a d e q u a t e . (c) The p r o c e s s o f d e l i v e r y o f s e r v i c e s f o r r e t a r d e d a d u l t s w i t h i n the s t u d y a r e a had been u n c o o r d i n a t e d a t l e a s t , a t the community l e v e l . (d) There had been an i n c r e a s e d use o f s o c i a l and m e d i c a l s e r v i c e s by s u b j e c t s under t h e p r e - n o r m a l i z a t i o n and t h e n o r m a l i z a t i o n p e r i o d s . (e) An i m p o r t a n t a r e a o f s e r v i c e Inadequacy was v o c a t i o n a l s e r v i c e s . However, d e f i c i e n c y i n terms of adequacy of s e r v i c e was found i n a l l s e r v i c e s e x c e p t i n g s o c i a l s e r v i c e s . I n t h e l a t t e r , t h e r e seemed t o be a tendency f o r i d e n t i f i c a t i o n o f more needs f o r w h i c h s e r v i c e s c o u l d be p r o v i d e d . T h i s s t u d y d i d n o t l o o k a t t h e - 203 -q u a l i t a t i v e a s p e c t s o f s e r v i c e s . I t s i m p l y i d e n t i f i e d and s c o r e d them a c c o r d i n g t o st u d y c r i t e r i a . ( f ) A l t h o u g h m e n t a l r e t a r d a t i o n has been r e g a r d e d as a s o c i a l r a t h e r t h a n a m e d i c a l phenomenon, y e t , l i n k a g e s w i t h t h e m e d i c a l system c o n t i n u e d t o i n f l u e n c e s e r v i c e s . F o r example, s o c i a l w o r k ers from M e n t a l H e a l t h S e r v i c e s had r e s p o n s i b i l i t y f o r a m a j o r i t y o f b o a r d i n g homes. (g) S e r v i c e s f o r m e n t a l l y r e t a r d e d a d u l t s w i t h i n the st u d y a r e a had been e s s e n t i a l l y l e a s t n o r m a l i z i n g o r d e v i a n t . (h) N o r m a l i z a t i o n was not a ' p o l i c y 1 b u t a p r i n c i p l e o f t h e government and t h a t n o r m a l i z a t i o n and d e i n s t i t u t i o n a l i z -a t i o n a r e s e p a r a t e and d i s t i n c t e n t i t i e s . 6.3 I m p l i c a t i o n s The i m p l i c a t i o n s o f t h i s s t u d y a r e two f o l d : (a) I m p l i c -a t i o n s f o r p o l i c y making and (b) I m p l i c a t i o n s f o r f u r t h e r r e s e a r c h . 6.3.1 I m p l i c a t i o n s f o r P o l i c y Making I n g e n e r a l t e r m s , the i m p l i c a t i o n s o f t h i s s t u d y w i t h r e s p e c t t o p o l i c y making r e l a t e t o t h e o r g a n i z a t i o n o f com-munity based s e r v i c e s f o r m e n t a l l y r e t a r d e d a d u l t s . A l t h o u g h board s t a t e m e n t s o f p r i n c i p l e and o b j e c t i v e s have been made, the c e n t r a l problem r e l a t e s t o t h e l e g i t i m i z a t i o n and i m p l e -m e n t a t i o n o f the o b j e c t i v e s . Assuming t h a t i n c e r t a i n i n s t a n c e s , a s t a t e m e n t o f p r i n c i p l e may be s u b s t i t u t e d as a u t h o r i z a t i o n - 204 -f o r a c t i o n , n e v e r t h e l e s s , i t i s o n l y when a p r i n c i p l e has been c o n v e r t e d t o l e g i t i m a t e p o l i c y i s i t f e a s i b l e t o implement. Even t h e n , t h e d i r e c t i o n , e x t e n t and imp l e m e n t i n g a g e n t s / a g e n c i e s would have t o be s p e c i f i e d . Government p o l i c y s t a t e m e n t s a r e u s u a l l y b road i n n a t u r e . However, o n l y when t h e p o l i c y s t a t e m e n t s have been l e g i t i m a t i z e d t h r o u g h l e g i s l a t i o n , f o r example, i s i t p o s s i b l e t o make some f o r w a r d p r o g r e s s . The f i n d i n g o f l a c k o f c o o r d i n a t i o n o f community based s e r v i c e s i s p r o b a b l y n o t new t o d e c i s i o n makers. But from t h e s t a n d p o i n t o f r e s o u r c e s - human and m a t e r i a l - i t r e p r e -s e n t s a s i g n i f i c a n t waste o f r e s o u r c e s . The s t u d y may su g g e s t a r e e x a m i n a t i o n o f the a c t i v i t i e s o f the v o l u n t e e r s e c t o r i n view o f t h e h i g h p e r c e n t a g e s o f d e v i a n t s e r v i c e s i n v o l u n t e e r s e c t i o n o p e r a t e d s e r v i c e s . Having become i n v o l v e d w i t h d e l i v e r y o f s e r v i c e s , the v o l u n t e e r o r advocate s e c t o r has i n d i r e c t l y compromised i t s a b i l i t y t o seek the l e g i t i m i z a t i o n o f n o r m a l i z a t i o n by Government. New p o l i c y d i r e c t i o n s may have t o be d e v e l o p e d i n o r d e r t o e l e v a t e t h e l e v e l o f n o r m a l i z a t i o n i n community based s e r v i c e s . 6.3.2 I m p l i c a t i o n s f o r F u r t h e r Research From t h e b e g i n n i n g , t h i s s t u d y was s t a t e d as a p r o c e s s s t u d y . T h e r e f o r e , t h e r e i s a need t o examine t h e outcome o^ the v a r i o u s i n t e r v e n t i o n measures w h i c h have been d e v e l o p e d as p a r t o f n o r m a l i z a t i o n . - 205 -A second a r e a f o r s t u d y would be t o examine the reasons f o r h i g h u t i l i z a t i o n l e v e l s o f m e d i c a l and s o c i a l s e r v i c e s b e f o r e and a f t e r t h e i n t r o d u c t i o n o f a s o c i a l system o f s e r v i c e d e l i v e r y . A t h i r d a r e a f o r s t u d y may examine a s p e c t s o f human r i g h t as they i n t e r f a c e w i t h n o r m a l i z a t i o n a t g e n e r a l s o c i a l l e v e l s and a t i n d i v i d u a l l e v e l s . A f i n a l a r e a o f s t u d y may be t o examine a l t e r n a t i v e means f o r d e f i n i n g n o r m a l i z a t i o n o r t o use t h e methodology d e v e l o p e d f o r t h i s s t u d y i n l o o k i n g a t d i f f e r e n t a r e a s o f B r i t i s h C o l u m b i a , d i f f e r e n t p r o v i n c e s o r d i f f e r e n t s o c i e t i e s . - 206 -BIBLIOGRAPHY Anderson, T.P. E d u c a t i o n a l Frame o f R e f e r e n c e : An A d d i t i o n a l Model f o r R e h a b i l i t a t i o n M e d i c i n e . A r c h . Phys. Med. & Rehab. 59, 1978, 203. A r h o f f , F.N. S o c i a l Consequences o f P o l i c y Toward M e n t a l I l l n e s s . S c i e n c e 188, 1977, 1277-1281. Armour, W.D. The Needs o f t h e R e t a r d e d A d u l t . Can. Fam. Phys. 25, 1979, 1359-1363. Ashbaugh, J.A. & B r a d l e y , V . J . 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( v i ) Sample o f a p p r o v a l s from t h e V o l u n t e e r S e c t o r t o engage i n Study. - 223 -THE UNIVERSITY OF BRITISH COLUMBIA 2075 WESBROOK MALL VANCOUVER, B.C., CANADA a p a r t m e n t o f H e a l t h C a r e a n d E p i d e m i o l o g y / f i<l4l99R 9 7 7 y V C U L T Y O F M E D I C I N E ibu*)U8^77t E A L T H S C I E N C E S C E N T R E F e b r u a r y 4, 1981 Dr. P. Hughes Manager Woodlands M i n i s t r y o f Human Resources 9 E a s t Columbia S t r e e t New W e s t m i n s t e r Madam: Re: P e r m i s s i o n t o O b t a i n Data from I n s t i t u t i o n a l Records f o r a Graduate T h e s i s I am p r e s e n t l y u n d e r t a k i n g a st u d y o f p r e v i o u s l y i n s t i t u t i o n -a l i z e d a d u l t s who a r e now l i v i n g i n t h e community. T h i s r e q u i r e s d a t a r e l a t i n g t o t h e i r c h a r a c t e r i s t i c s such as age, sex and l e v e l o f r e t a r d a t i o n , as w e l l as t h e i r needs p r i o r t o d i s c h a r g e . I am, t h e r e f o r e , s e e k i n g p e r m i s s i o n t o examine and c o l l e c t d a t a from the r e c o r d s o f about 200 a d u l t s who were d i s c h a r g e d between J a n u a r y 1, 19&^ and December 31, 19^0J. Names o f s u b j e c t s w i l l n o t be used i n any r e c o g n i z a b l e manner and e v e r y attempt w i l l be made t o p r e s e r v e c o n f i d e n t i a l i t y . Data f o r the s t u d y w i l l be g a t h e r e d between F e b r u a r y 25 t o March 31, 1981. Thank you. Yours s i n c e r e l y , Godwin E n i c c : Dr. P. Woodward T h e s i s C o n s u l t a n t - 224 -THE UNIVERSITY OF BRITISH COLUMBIA 2075 WESBROOK MALL. VANCOUVER, B.C., CANADA jpartment of Health Care and Epidemiology ' (60-1)228-2772 VCULTY OF MEDICINE E A L T H SCIENCES C E N T R E F e b r u a r y 4, 1981 Mr./Ms. R e g i o n a l Manager Region M i n i s t r y o f Human Resources Dear Sir/Madam: Re: P e r m i s s i o n t o O b t a i n Data f o r a Graduate T h e s i s from R e g i o n a l Records and t o I n t e r v i e w R e g i o n a l / D i s t r i c t S t a f f I am p r e s e n t l y s t u d y i n g some s e r v i c e r e s p o n s e s t o the needs o f p r e v i o u s l y i n s t i t u t i o n a l i z e d r e t a r d e d a d u l t s from Woodlands, who a r e now l i v i n g i n y o u r community. T h i s r e q u i r e s d a t a r e l a t -i n g t o the s e r v i c e s t h e y a r e now r e c e i v i n g w i t h s u p p o r t from your R e g i o n / D i s t r i c t . I am, t h e r e f o r e , s e e k i n g p e r m i s s i o n t o examine and c o l l e c t d a t a from your r e c o r d s as the s u b j e c t s a r e i d e n t i f i e d . Data w i l l r e l a t e o n l y t o thos e a d u l t s who have been d i s c h a r g e d from Wood-l a n d s between J a n u a r y 1, 1 9 ^ and December 31, 19^0. E v e r y attempt w i l l be made t o p r e s e r v e c o n f i d e n t i a l i t y , and the names of s u b j e c t s w i l l not be used. I am a l s o s e e k i n g p e r m i s s i o n t o i n t e r v i e w some o f your s t a f f i f and when d a t a from r e c o r d s a r e i n c o m p l e t e . I hope t o ga t h e r t h e r e l e v a n t d a t a between F e b r u a r y 25 and March 31, 1981. Thank you. Yours s i n c e r e l y , Godwin E n i - 225 -THE UNIVERSITY OF BRITISH COLUMBIA A ( i v ) 2075 W E S B R O O K M A L L VANCOUVER, B.C., CANADA a p a r t m e n t o f H e a l t h C a r e a n d E p i d e m i o l o g y ( 6 0 4 ) 2 2 8 - 2 7 7 2 V C U L T Y O F M E D I C I N E E A L T H S C I E N C E S C E N T R E F e b r u a r y 4, 1 9 8 1 Mr./Ms. E x e c u t i v e D i r e c t o r A s s o c i a t i o n f o r the M e n t a l l y R e t a r d e d Dear Sir/Madam: Re: P e r m i s s i o n t o O b t a i n Data f o r a Graduate T h e s i s from your D i s t r i c t Records and t o I n t e r v i e w S t a f f I am p r e s e n t l y s t u d y i n g some s e r v i c e r e s p o n s e s t o th e needs of p r e v i o u s l y i n s t i t u t i o n a l i z e d r e t a r d e d a d u l t s from Woodlands, who a r e now l i v i n g i n your d i s t r i c t and r e c e i v i n g s e r v i c e s under c o n t r a c t o r o t h e r w i s e w i t h t h e Region. I am, t h e r e f o r e , s e e k i n g p e r m i s s i o n t o examine and c o l l e c t d a t a from your r e c o r d s as the s u b j e c t s are i d e n t i f i e d from the r e c o r d s a t Woodlands. Data w i l l r e l a t e t o th o s e a d u l t s who have been d i s c h a r g e d from Woodlands between J a n u a r y 1 , 19&0J and Decem-be r 3 1 , 19^Q. I am a l s o s e e k i n g p e r m i s s i o n t o i n t e r v i e w some o f your s t a f f i f and when d a t a from r e c o r d s are i n c o m p l e t e . E v e r y attempt w i l l be made t o p r e s e r v e c o n f i d e n t i a l i t y , and names o f s u b j e c t s w i l l n o t be used i n any r e c o g n i z a b l e form. I hope t o g a t h e r r e l e v a n t d a t a from F e b r u a r y 25 t o March 3 1 , 1 9 8 1 . Thank you. Yours s i n c e r e l y , Godwin E n i - 228 -APPENDIX B ( i ) L e t t e r t o Members o f P a n e l o f judges ( i i ) D e f i n i t i o n s o f M e n t a l R e t a r d a t i o n , N o r m a l i z a t i o n and S e l e c t e d Government's p o l i c y s t a t e m e n t s on N o r m a l i z -a t i o n . ( i i i ) - ( i x ) C l o s e d q u e s t i o n n a i r e s f o r p a n e l o f judges f o r s p e c i f i c s e r v i c e a r e a s . - 230 -B ( i i ) MENTALLY RETARDED ADULTS LIVING IN THE COMMUNITY 1. DEFINITIONS: M e n t a l R e t a r d a t i o n : By " m e n t a l l y r e t a r d e d " we mean p e o p l e s i m i l a r to t h o s e who l i v e i n i n s t i t u t i o n s f o r the r e t a r d e d such as Woodlands i n New W e s t m i n s t e r . Some of t h e s e p e o p l e have o n l y moderate p r o b l e m s i n i n t e l l i g e n c e w h i l e o t h e r s have more s e v e r e p r o b l e m s . Over h a l f of t h e s e p e o p l e can communicate v e r b a l l y and can e a t and d r e s s w i t h l i t t l e a s s i s t a n c e . V e r y few have p r o b l e m s s e e i n g or h e a r i n g and t h e m a j o r i t y can walk w i t h o u t d i f f i c u l t y . N o r m a l i z a t i o n : The " p r i n c i p l e of n o r m a l i z a t i o n " means "making a v a i l a b l e to the m e n t a l l y r e t a r d e d , p a t t e r n s and c o n d i t i o n s of e v e r y d a y l i f e w h i c h a r e as c l o s e as p o s s i b l e to the norms and p a t t e r n s of t h e m a i n s t r e a m o f s o c i e t y . " 2. STATEMENTS ON THE POLICY OF NORMALIZATION FROM THE MINISTRY OF HUMAN' RESOURCES ANNUAL REPORT, 1975.  (a) "To r e t u r n m e n t a l l y r e t a r d e d a d u l t s to t h e i r own homes or co m m u n i t i e s from t h e i n s t i t u t i o n s . " (b) " . . . . t o p a r t i c i p a t e i n community l i f e . " (c) " . . . . t o have r i g h t to economic s e c u r i t y and engage i n m e a n i n g f u l o c c u p a t i o n as d e t e r m i n e d by c a p a b i l i t y . " (d) To have " e q u a l human r i g h t s . " (e) To make a v a i l a b l e "community s e r v i c e s to a l l c i t i z e n s of B r i t i s h C o l u m b i a i n c l u d i n g t h e m e n t a l l y r e t a r d e d . " o p p o r t u n i t y to h i s or h e r GE/mb MENTALLY RETARDED ADULTS IN THE COMMUNITY B ( i i i ) The f o l l ow i ng th ree pa i r s o f statements summarize d i f f e r e n t f e e l i n g s and behaviours about s e r v i c e s which are made a v a i l a b l e to menta l l y re ta rded a d u l t s . P lease check o f f ( >/) one statement o f each p a i r o f statements tha t comes c l o s e r to your understanding o f A: Norma l i z ing s e r v i c e or behaviours B: Sub-norma l i z ing s e r v i c e o r behaviours C: Least no rma l i z i ng s e r v i c e or behaviours RESIDENTIAL SERVICE A. Norma l i z ing Men ta l l y re ta rded adu l t s should l i v e independent ly or semi- independent ly i n t h e i r own homes, f am i l y homes or apartments, i n areas where most people l i v e : ( i ) ( ) With o ther non-menta l ly re ta rded a d u l t s , ( i i ) ( ) With o ther menta l l y re tarded a d u l t s . B. Subnormal i z ing Menta l l y re ta rded adu l t s may l i v e i n boarding homes or group homes w i th s i x or l e s s adu l t s - where there i s s upe r v i s i on w i th personal care or general care or minor a s s i s t ance w i th housekeeping i n c l u d i n g scheduled programs: ( i ) ( ) These homes may have combined or separate un i t s f o r menta l l y re ta rded and non- re tarded a d u l t s . ( i i ) ( ) These homes may not have un i t s f o r non-menta l ly re tarded a d u l t s . C. Least Norma l i z ing Men ta l l y re ta rded adu l t s shou ld l i v e i n res idences o f s i x or more adu l t s such as group homes, or nurs ing homes or i n s t i t u t i o n s where there i s med i c a l , personal o r phys i ca l s u p e r v i s i o n : ( i ) ( ) These res idences should not be separate from those f o r non-menta l ly re ta rded a d u l t s . ( i i ) ( ) These res idences should be separate from those o f non-menta l l y re ta rded a d u l t s . - 232 -B ( i v ) MENTALLY RETARDED ADULTS IN THE COMMUNITY The f o l l ow i ng three pa i r s o f statements summarize d i f f e r e n t f e e l i n g s and behaviours about s e r v i c e s which are made a v a i l a b l e to menta l l y re tarded a d u l t s . P lease check o f f ( vO one statement o f each p a i r o f statements tha t comes c l o s e r to your understanding o f A: Norma l i z ing s e r v i c e or behaviour B: Subnormal i z ing s e r v i c e or behaviour C: Least no rma l i z i ng s e r v i c e or behaviour SOCIAL SERVICE A. Norma l i z ing ( i ) ( ) Menta l l y re ta rded adu l t s should rece i ve s o c i a l se r v i ces or s o c i a l a s s i s t ance a v a i l a b l e to a l l members o f the community, at t h e i r reques t , w i thout becoming s e l f -suppo r t i ng . ( i i ) ( ) Menta l l y re ta rded adu l t s should e i t h e r be s e l f - s u p p o r t -i n g , or at t h e i r reques t , should rece i ve s o c i a l se r v i ces or s o c i a l a s s i s t ance which are a v a i l a b l e to a l l members o f the community. B. Subnormal i z ing ( i ) ( ) Menta l l y re ta rded adu l t s should r ece i ve spec i a l types o f s o c i a l s e r v i c e s or s o c i a l a s s i s t ance a f t e r some s p e c i a l -i z ed eva lua t i on i f they or t h e i r r e l a t i v e s or guardians request the s e r v i c e s . ( i i ) ( ) Men ta l l y re ta rded adu l t s shou ld r e ce i ve spec i a l types o f s o c i a l s e r v i c e s or s o c i a l a s s i s t ance wi thout s p e c i a l i z e d eva l ua t i on i f they or t h e i r r e l a t i v e s request the s e r v i c e s . C. Least Norma l i z ing ( i ) ( ) Men ta l l y re tarded adu l t s should rece i ve s p e c i f i c types o f s o c i a l s e r v i c e s or s o c i a l a s s i s t ance f o r mental r e t a r da t i on or f o r d i s a b i l i t y groups a f t e r some type o f medical or s o c i a l e v a l u a t i o n . Such se r v i c e s may be organ ized and managed fo r them where they l i v e , or by a person or persons who are not r e l a t i v e s . ( i i ) ( ) Menta l l y re ta rded adu l t s should rece i ve s p e c i f i c types o f s o c i a l a s s i s t ance or s o c i a l s e r v i c e s f o r a l l d i s a b i l i t y groups w i thout medical o r s o c i a l e v a l u a t i o n . Such s e r v i c e s may be c e n t r a l l y managed by an agency, or a p ro fes s i ona l group. - 233 -MENTALLY RETARDED ADULTS IN THE COMMUNITY B ( v ) The f o l l ow i ng three pa i r s o f statements summarize d i f f e r e n t f ee l i ng s and behaviours about s e r v i c e s which are made a v a i l a b l e to menta l l y re ta rded a d u l t s . P lease check o f f ( v/) one statement o f each p a i r o f statements tha t comes c l o s e r to your understanding o f : A: Norma l i z ing s e r v i c e or behaviour B: Sub-norma l i z ing s e r v i c e or behaviour C: Least no rma l i z i ng s e r v i c e or behaviour EDUCATION AND TRAINING SERVICE A. Norma l i z ing Menta l l y re ta rded adu l t s and non-retarded a d u l t s : ( i ) ( ) Shou ld , t oge the r , r e ce i ve t h e i r educat ion and t r a i n i n g in adu l t educat ion c lassrooms and f a c i l i t i e s w i t h i n the community w i thout mod i f i c a t i o n o f r egu l a r student programs. ( i i ) ( ) Should sepa ra t e l y rece i ve t h e i r educat ion and t r a i n i n g i n adu l t educat ion classrooms and f a c i l i t i e s w i t h i n the community w i thout mod i f i c a t i o n o f r egu l a r s tudent programs. B. Subnormal i z ing Menta l l y re ta rded adu l t s should r ece i ve s pe c i a l educat ion and t r a i n i n g i n the community: ( i ) ( ) In mixed r egu l a r and s p e c i a l i z e d educat iona l f a c i l i t y w i th add i t i o na l i n s t r u c t i o n or some mod i f i c a t i o n o f programs. ( i i ) ( ) In separate s p e c i a l i z e d educat iona l f a c i l i t y w i th add i t i o na l i n s t r u c t i o n or some mod i f i c a t i o n o f programs. C. Least Norma l i z ing Menta l l y re tarded adu l t s should r ece i ve s p e c i a l l y designed educat ion and t r a i n i n g programs in s p e c i a l i z e d f a c i l i t i e s i n c l u d i n g one to one courses: ( i ) ( ) Of fered i n non-segregated classrooms ( i i ) ( ) Of fered i n segregated classrooms - 234 -MENTALLY RETARDED ADULTS IN THE COMMUNITY B (vi) The f o l l ow i ng three pa i r s of statements summarize d i f f e r e n t f e e l i ng s and behaviours about se r v i ce s which are made a v a i l a b l e to menta l l y re ta rded a d u l t s . P lease check o f f (V) one statement i n each p a i r o f statements t ha t comes c l o s e r to your understanding o f : A: Norma l i z ing s e r v i c e or behaviour B: Subnormal i z ing s e r v i c e or behaviour C: Least no rma l i z i ng s e r v i c e or behaviour VOCATIONAL SERVICE A. Norma l i z ing Menta l l y re ta rded adu l t s should r e ce i v e gener i c voca t i ona l s e r v i c e s wi th non-menta l ly re tarded adu l t s i n a community f a c i l i t y : ( i ) ( ) Which i s l o ca ted in an i n d u s t r i a l area of the community and which prov ides work placement or r egu l a r type employ-ment a f t e r a minimum pe r i o d . ( i i ) ( ) Which i s l o ca ted anywhere i n the community and which prov ides work placement or r egu l a r type employment a f t e r a minimum pe r i od . B. Subnormal i z ing Men ta l l y re ta rded adu l t s should r e ce i ve voca t i ona l s e r v i ce s w i th or w i thout non-menta l ly re ta rded adu l t s i n a community or non-community f a c i l i t y which prov ides s e l e c t ed work programs: ( i ) ( ) Se rv i ces may advance graduates to r egu l a r type employment or work placement. ( i i ) ( ) Se rv i ces may advance graduate to spec i a l type employment o r s p e c i f i c work placement. C. Least Norma l i z ing Menta l l y re ta rded adu l t s should rece i ve s p e c i a l i z e d voca t i ona l s e r v i c e s / t r a i n i n g from spec i a l f a c i l i t i e s which are s e l f - s u f f i c i e n t and: ( i ) ( ) Which advance menta l l y re ta rded adu l t s to s p e c i a l i z e d work placement. ( i i ) ( ) Which do not advance re tarded adu l t s to work placement. MENTALLY RETARDED ADULTS IN THE COMMUNITY B ( v i i ) The following three pairs of statements summarize different feelings and behaviours about services which are made available to mentally retarded adults. Please check off ( V) one statement in each pair of statements that comes closer to your understanding of: A: Normalizing service or behaviour B: Subnormalizing service or behaviour C: Least normalizing service or behaviour RECREATION AND LEISURE SERVICE A. Normalizing Recreation and leisure services for mentally retarded adults should involve a variety of individually prefered act iv i t ies which take place: ( i) ( ) With non-retarded adults in community f a c i l i t i e s , ( i i ) ( ) With other mentally retarded adults in community f a c i l i t i e s . B. Subnormalizing Recreation and leisure services for mentally retarded adults should involve some individually prefered act iv i t ies which take place in the community: ( i) ( ) With separate act iv i t ies for retarded and non-retarded adults in the same building, f a c i l i t y or area at the same time. ( i i ) ( ) With similar act iv i t ies for mentally retarded and non-retarded adults in separate building, f a c i l i t y or area at the same time. C. Least Normalizing Mentally retarded adults should receive specif ic and separate recrea-tion and leisure services/activities/programs: (i) ( ) In special fac i l i t ies/area away from the community. ( i i ) ( ) In special fac i l i t ies/area in the community. i. - J <J MENTALLY RETARDED ADULTS IN THE COMMUNITY B ( v i i i ) The fol lowing three pairs of statements summarize d i f ferent feel ings and behaviours about services which are made avai lab le to mentally retarded adul ts . Please check o f f ( V ) one statement in each pair of statements that comes c loser to your understanding of: Normalizing service or behaviour Subnormalizing service or behaviour Least normalizing service or behaviour PSYCHOLOGY SERVICE A. Normalizing ( i ) ( ) ( i i ) ( ) Psychology services for mentally retarded adults should be provided in professional o f f i ces which are located in designated agencies with in the community and are ava i lab le to non-retarded members of the community. Psychology services for mentally retarded adults should be provided in professional o f f i ces which are generally located in non-designated agencies and are avai lab le to non-retarded members of the community. B. Subnormalizing ( i ) ( ) Psychology services for mentally retarded adults should be provided in the community but not accessible to non-mentally retarded adul ts . ( i i ) ( ) Psychology services for mentally retarded adults should not be provided in the community but accessible to non-mentally retarded adul ts . Least Normalizing ( 1 ) ( ) ( i i ) ( ) Psychology services for mentally retarded adults should be provided in spec i f i c agencies, organizations or f a c i l i t i e s for mental retardat ion and other d i s a b i l i t i e s . Psychology services for mentally retarded adults should be provided in spec i f i c agencies, organizations or f a c i l i t i e s for mental retardat ion only. MENTALLY RETARDED ADULTS IN THE COMMUNITY B ( i x ) The f o l l ow i ng three pa i r s o f statements summarize d i f f e r e n t f ee l i ng s and behaviours about s e r v i c e s which are made a v a i l a b l e t o menta l l y re tarded a d u l t s . P lease check o f f ( V ) one statement i n each p a i r o f statements tha t comes c l o s e r to your understanding o f : A: Norma l i z ing s e r v i c e or behaviour B: Subnormal i z ing s e r v i c e or behav iour C: Least no rma l i z i ng s e r v i c e or behaviour MEDICAL SERVICE A. Norma l i z ing ( i ) ( ) Medica l s e r v i c e s f o r men ta l l y re ta rded adu l t s should be prov ided by fam i l y phys i c i ans i n the community chosen by the p a t i e n t , or t h e i r f a m i l i e s . The p r a c t i c e s should prov ide fo r non-menta l ly re ta rded adu l t s and seek s p e c i a l i z e d care through r e f e r r a l to s p e c i a l i s t s . ( i i ) ( ) Medical s e r v i c e s f o r menta l l y re ta rded adu l t s should be prov ided by f am i l y phys i c i ans i n the community chosen by p r o f e s s i o n a l s , such as a s o c i a l worker , advocates , or f r i e n d s . The p r a c t i c e s should prov ide f o r non-menta l ly re tarded adu l t s and seek s p e c i a l i z e d care through r e f e r r a l to s p e c i a l i s t s . B. Subnormal i z ing Medical s e r v i c e s f o r menta l l y re ta rded adu l t s should be provided by: ( i ) ( ) A phys i c i an or group o f phys i c i ans -under arrangement w i th an o r g a n i z a t i o n ; agency or w i th p ro f e s s i ona l s - such as s o c i a l workers-and have agreed to prov ide these se r v i c e s i n the community w i th appropr i a te r e f e r r a l s to s p e c i a l i s t s . ( i i ) ( ) A phys i c i an or group o f phys i c i ans who l i v e i n the community but have agreed to prov ide s e r v i c e s to retarded pa t i en t s i f t h e i r p r a c t i c e case loads d e c l i n e . C. Least Norma l i z ing ( i ) ( ) Medical s e r v i c e s f o r menta l l y re ta rded adu l t s are prov ided i n mental r e t a r da t i o n f a c i l i t i e s , agencies or res idences by a phys i c i an or a group o f phys i c i ans on f i x e d s a l a r y . ( i i ) ( ) Medical s e r v i c e s f o r menta l l y re tarded adu l t s are prov ided i n mental r e t a r d a t i o n f a c i l i t i e s , agencies or res idences by community based phys i c i ans under arrangement. - 238 -APPENDIX C ( i ) Measures o f S e r v i c e : C r i t e r i a f o r N o r m i n a l S c o r e s ( i i ) - ( v i i i ) Measures o f S e r v i c e s (a) R e s i d e n t i a l S e r v i c e (b) S o c i a l S e r v i c e (c) E d u c a t i o n and T r a i n i n g S e r v i c e s (d) V o c a t i o n a l S e r v i c e (e) R e c r e a t i o n and L e i s u r e S e r v i c e s (f) P s y c h o l o g i c a l S e r v i c e (g) M e d i c a l S e r v i c e - 239 - C ( i ) MEASURES OF SERVICES CRITERIA FOR NOMINAL SCORES MEASURE CRITERIA 'SCORE A. Norma l i z ing or Therapeut ic Se r v i c e a . Se rv i ce or behav iour , i . e . a p p l i -cab le to a l l s e c t i on o f the community. b. Process cannot be d i s t i n gu i s h ed from everyday behaviour or expec ta t i ons o f people i n gene ra l . c . Se rv i ce f o r process cannot be i n t e r -preted as unique to the menta l l y r e -tarded or to any o ther group w i th d i s -a b i l i t y i n the community. 3 B. Subnormal i z ing or Ma in ta i n i ng Se rv i ce a . Se rv i ce or behaviour may or may not be app l i c a b l e to a l l s ec t i ons o f the community. b. Process may, to an ex t en t , be d i s t i n -gu i shab le from everyday behaviour or expec ta t i ons o f people i n gene r a l . c . Se rv i ce or process may or may not be i n t e r p r e t ed as unique to mental r e t a r d a t i o n or to any o ther group w i th d i s a b i l i t y i n the community. 2 C. Least No rma l i z i ng , Cus tod ia l or . dev i an t . a . Se rv i ce i s d i s t i n c t i v e l y c o n t r o l l i n g or a p p l i c a b l e to mental r e t a r d a t i o n and/or other d i s a b i l i t y groups in the community. b. Process can be d i s t i n gu i s h ed from everyday behaviour or expec ta t ions o f people i n gene r a l . c . Process and/or s e r v i c e are unique to mental r e t a r d a t i o n or to o ther groups w i th d i s a b i l i t y . 1 - 240 -C ( i i ) MEASURES OF SERVICES RESIDENTIAL SERVICE CATEGORY MEASURE CRITERIA SCORE A a. b. c. d. Own home Family home Apartment home Room and Board Boarding home 3 Nature of Residence B a. b. Proprietary/Commercial Boarding home Group home with six or less adults 2 C a. b. c d. e. Group home with seven or more adults Supervised residential care f a c i l i t y with seven or more adults Intermediate care f a c i l i t y - any size - with sk i l led medical supervision. Nursing home Congregate care f a c i l i t y or ins t i tu -tion such as prisons, psychiatric hospital or inst i tut ion for the mentally retarded. 1 A a. b. Independent l iv ing in own home, family home, apartment or room. Semi-independent l iv ing in family home or apartment where dependence is for accommodation only. 3 Type of Residence B a. b. c. Supervised l i v ing - personal care. Supervised l i v ing and minor assistance with housekeeping. Supervised l i v ing personal, and general care including scheduled programs 2 C a. b. c. Dependent l iv ing - personal care. Dependent l iv ing physical care. Dependent l iv ing personal and physical care. Name of Residence A a. b. Name of residence - i f given - cannot be interpreted as unique for a group with d i s a b i l i t y and/or mental retard-at ion. Name is generic and indicate community services for everyone without di f feren-tat ion. 3 f - 241 -CATEGORY MEASURE CRITERIA SCORE a . Name i s ambiguous and may o r may not be i n t e r p r e t e d as unique f o r a group w i th mental r e t a r d a t i o n or o the r d i s a b i l i t y . b. Name r e f l e c t s a purpose or i n d i c a t e s consumerism and/or advocacy. a . Name i s s p e c i f i c or d i s t i n c t i v e f o r a group w i t h mental r e t a r d a t i o n or o the r d i s a b i l i t y . b. D i s t i n c t name i s understood in l o c a l community as i n d i c a t i v e o f r es idence f o r groups w i t h d i s a b i l i t y , such as the men ta l l y r e t a r d ed . Loca t ion o f Residence a. b. ( A r b i t r a r y C r i t e r i a ) Loca t i on i n a r e s i d e n t i a l a rea o f town o r community - des igna ted i n accordance w i th l o c a l zon ing bye l aws . Located i n r e s i d en t i a l / c ommer c i a l area o f town or community w i t h fewer non-re ta rded r e s i d e n t s . (Except where the r e s i d en t s i s a f am i l y home. The reason f o r l o c a t i o n may be probed t o a s s i s t " s c o r i n g . ) Res idence i s i s o l a t e d from r e s i d e n t i a l and/or commercial areas o f the Community, Res idence i s l o c a t ed i n an i n d u s t r i a l area o f the community. I n t eg r a t i on o f L i v i n g Un i t s a . Res idence con t a i n s l i v i n g u n i t s f o r r e t a rded and non- re tarded a d u l t s . b. L i v i n g u n i t s are not p h y s i c a l l y separate or d i f f e r e n t from rea l home or apartment l a y o u t . c . Un i t s are s i m i l a r i n des ign and general appearance. c . Retarded and non- re ta rded adu l t s l i v e i n i n the r e s i d en c e . a . Res idence con ta in s separa te un i t s f o r r e ta rded and non- re ta rded a d u l t s . b. Un i t s a re p h y s i c a l l y s epa ra t e . c . Un i t s a re d i s s i m i l a r i n des i gn d . Retarded and non- re ta rded l i v e i n separa te s e c t i on s o f the res idence i e . phy s i c a l s e p a r a t i o n . - 242 - C ( i i i ) CATEGORY MEASURE CRITERIA SCORE Residence and/or r e s i d e n t i a l u n i t s a re d i s t i n c t i v e l y separate from those o f non r e t a rded adu l t s i n many r e spec t s - p h y s i c a l l y , o r s t r u c t u r a l l y . Severa l l i v i n g u n i t s have common access to an e s s e n t i a l f a c i l i t y such as washrooms, s i t t i n g room study room, e t c . SOCIAL SERVICE Nature o f Soc i a l S e r v i c e a . s e l f suppo r t i ng b. we l f a r e c . GAIN - Guaranteed Annual Income f o r Need - w i thou t medica l assessment or f o r sho r t term b e n e f i t . a . GAIN - w i t h medica l en t r y and a s s -essment b. S p e c i a l i z e d types o f f i n a n c i a l a s s i s t a n c e which r e q u i r e means t e s t c . HPIA - Handicapped persons income a s s i s t a n c e under GAIN d . Homemaker s e r v i c e s ( s o c i a l ) e . C oun se l l i n g s e r v i c e s - Adu l t support f o r handicapped o r men ta l l y re ta rded persons . a . Comforts a l lowance b. R e s p o n s i b i l i t y f o r s o c i a l s e r v i c e b ene f i t s and i t s a d m i n i s t r a t i o n i s centered i n the management o f the f a c i l i t y / h o m e / r e s i d e n c e i n which the person 1 i v e s c. Absence o f s o c i a l support and s e r v i c e s S e l f i n i t i a t e d by r e c i p i e n t f o r the p r o v i s i o n o f s e r v i c e which i s a v a i l a b l e to the community a t l a r g e Has genera l en t r y - acco rd ing to need -f o r a l l members o f the community. - 243 -C (iv) CATEGORY MEASURE CRITERIA SCORE Type o f Soc i a l Se r v i c e a . I n i t i a t e d by gua rd i an , r e l a t i v e or f r i e n d b. Requires m u l t i p l e en t r y - such as med i c a l , s o c i a l , educa t i ona l and means. a . I n i t i a t e d by s o c i a l worker , a p ro-f e s s i o na l o r by a f a c i l i t y or agency f o r mental r e t a r d a t i o n b. Requi res s p e c i f i c en t r y such as medical e va l ua t i on and/or d i a g n o s i s . Name o f Soc i a l Se r v i c e Name o f s o c i a l s e r v i c e cannot be i n t e r p r e t e d as be long ing to a group w i th mental r e t a r d a t i o n o r o ther d i s a b i l i t y Name o f s o c i a l s e r v i c e i s ambiguous and can be i n t e r p r e t e d as be long ing to a handicapped or a non handicapped group Name i s s p e c i f i c or d i s t i n c t i v e w i th respec t to d i s a b i l i t y groups or mental r e t a r d a t i o n Loca t ion o f Soc i a l Se r v i c e Se r v i c e or agency i s l o c a t ed i n o f f i c e s which ca t e r to the needs o f a l l members o f the community Se r v i c e or agency i s l o c a t ed i n o f f i c e s which c a t e r to the needs o f d i s a b l e d groups i n c l u d i n g the men ta l l y r e t a rded Se r v i c e or agency i s l o c a t ed i n o f f i c e s which c a t e r to the needs o f on l y men ta l l y r e ta rded adu l t s and/or c h i l d r e n I 1 EDUCATION AND TRAINING SERVICES * Community based adu l t educa t ion and t r a i n i n g f a c i l i t y - i n l o c a l educat ion or t r a i n i n g f a c i l i t i e s supported by the community at l a r ge - 244 -CATEGORY MEASURE CRITERIA SCORE Nature o f Educat iona l F a c i l i t y B C * * May or may not be based i n the community but supported by vo l un t ee r groups or government g r an t s / subs i d y Based ou t s i d e the community o r i n i s o l a t e d areas o f the community and supported by vo lun tee r g roups , o r government g r an t s / s ub s i d y . S p e c i a l -i z ed f a c i l i t y 3 1 A * No m o d i f i c a t i o n from r egu l a r s t uden t s ' programs u s u a l l y a v a i l a b l e i n the community 3 Type -o f -Educat iona l Program B C * * . Some m o d i f i c a t i o n o f programs or a d d i t i o n a l i n s t r u c t i o n s S p e c i a l l y des igned programs f o r men-t a l l y r e t a r d - d adu l t s i n d i s a b i l i t y groups 2 1 A * Gener ic name - non s p e c i f i c conno ta t i on - name does not r e f e r to a group w i th d i s a b i l i t y 3 Name o f Program or F a c i l i t y B * Name i s non-gener i c and geared towards t reatment and/or c o r r e c t i o n o f d i f f i c i -enc ies (such as oppo r t un i t y workshops, community l i v i n g s k i l l c e n t r e s , and achievement c en t r e s ) and not u s u a l l y a v a i l a b l e to community members at l a r g e 2 • C * Name i s s p e c i f i c f o r the men ta l l y r e t a r -ded or f o r a d i s t i n c t group such as the men ta l l y d i s ab l e d 1 A * Located w i t h i n the community as f o r o the r adu l t educat ion and t r a i n i n g s e r v i c e s 3 Loca t i on o f Program B * Located ad jacent to s p e c i a l i z e d r e s i d e n -t i a l f a c i l i t y f o r the men ta l l y r e ta rded o r o ther k inds o f d i s a b i l i t y 2 C * Located in a r e s i d e n t i a l f a c i l i t y / e n v i -ronment f o r men ta l l y r e ta rded or d i s ab l e d persons 1 - 245 -CATEGORY MEASURE CRITERIA SCORE A * Fu l l i n t e g r a t i o n i n community a du l t educa t ion c l a s s rooms , or educat ion and t r a i n i n g programs f o r r e t a rded and non- re ta rded adu l t s (Gener ic s e r v i c e ) 3 I n t eg r a t i o n P rog res s i ve I n c l u s i o n B C * * Spec i a l educa t ion o f f e r e d i n a r egu l a r s e t t i n g - i e , school or c o l l e g e Spec i a l educa t ion i n c l u d i n g one to one courses o f f e r e d i n a segregated s e t t i n g 2 1 VOCATIONAL SERVICE" A * Voca t i ona l s e r v i c e o f f e r s gener i c programs 3 Nature o f Voca t iona l Se r v i c e B C * * Se r v i c e o f f e r s s e l e c t ed work programs Se r v i c e o f f e r s s p e c i f i c and l i m i t e d work programs 2 1 Type o f Voca t iona l Se r v i c e A B * * Prov ides work placement or r egu l a r type employment a f t e r a minimum per iod May advance graduates to spec i a l type employment or s p e c i f i c work placement 3 2 C * Does not advance graduates to work placements ou t s i d e o f the environment 1 A * Name o f f a c i l i t y or program cannot be i n t e r p r e t e d as unique to a group w i t h d i s a b i l i t y 3 Name o f Se r v i c e B * Name has ambiguous i n t e r p r e t a t i o n and may not app ly to d i s ab l e d and not d i s -ab led persons 2 C * Name i s s p e c i f i c and d i s t i n c t i v e f o r a group w i th d i s a b i l i t y . 1 CATEGORY MEASURE - 246 -CRITERIA C ( v i ) SCORE Loca t i on A B Located i n an i n d u s t r i a l area o f community Located i n a r e s i d en t i a l / c ommer c i a l area except i n i n s tances where o ther i n d i s t r i a l f a c i l i t i e s are s i m i l a r l y l o c a t ed i n the area Located i n a r e s i d e n t i a l f a c i l i t y or i n i s o l a t i o n from the Community 2 1 I n t eg r a t i o n A B C P rov ides f o r a l l members o f the com-munity i r r e s p e c t i v e o f d i s a b i l i t y or r e t a r d a t i o n O c c a s i o n a l l y p rov ides f o r some non re ta rded o r handicapped adu l t s S p e c i f i c a l l y p rov ides f o r men ta l l y re ta rded o r d i s ab l e d adu l t s Nature o f S e r i v c e RECREATION AND LEISURE SERVICES Invo lves a v a r i e t y o f a c t i v i t i e s - th ree or more a c t i v i t i e s which are o r i g i n a l and which take p lace i n the Community Invo lves l e s s than two s e l e c t ed a c t -i v i t i e s based on a c t i v i t i e s tha t are a v a i l a b l e i n the community Invo lve s p e c i f i c a c t i v i t i e s f o r a de f -i n a b l y s p e c i f i c group such as f o r d i s -ab led or men ta l l y re ta rded persons Type o f S e r v i c e A B A c t i v i t i e s a re o f i n d i v i d u a l p re fe rence Some a c t i v i t i e s are o f i n d i v i d u a l p re -fe rence A c t i v i t i e s are pre-determined by c a r e -g i v e r s and are not i n d i v i d u a l pre ferences 1 - 247 -CATEGORY MEASURE CRITERIA SCORE A * Name o f s e r v i c e / p r o g r a m / a c t i v i t y "cannot be i n t e r p r e t e d as unique f o r a group w i t h d i s a b i l i t y o r mental r e t a r d a t i o n 3 Name o f S e r v i c e B * Name i s ambiguous and cou ld r e f e r to handicapped o r non handicapped groups 2 C * Name i s s p e c i f i c and/or d i s t i n c t i v e f o r a group w i t h d i s a b i l i t y o r mental r e t a r d a t i o n 1 A * Located i n genera l community f a c i l i t y or area f o r r e c r e a t i o n and/or l e i s u r e a c t i v i t i e s 3 Loca t i on B * Located i n areas or f a c i l i t i e s which are o c c a s i o n a l l y a v a i l a b l e to_ handicapped._. persons f o r l e i s u r e o r r e c r e a t i o n a l a c t i v i t i e s 2 C * I s o l a t e d from Community f a c i l i t i e s / a r e a s or l o c a t ed i n or near the res idence o f a s p e c i f i c group w i t h . d i s a b i l i t y or a c t i v i t y does not take p lace i n areas which are g e n e r a l l y a v a i l a b l e to the community f o r such a c t i v i t i e s 1 A * F u l l y i n t e g r a t ed s e r v i c e and/or a c t i v i t y f o r a l l members o f the community i r r e s -pe c t i v e o f r e t a r d a t i o n and/or handicaps 3 I n t e g r a t i o n B * Separate a c t i v i t i e s f o r re ta rded and non re ta rded adu l t s i n the same b u i l d i n g , f a c i l i t y or area a t same or separate t imes 2 C * Separate a c t i v i t i e s i n s p e c i a l f a c i l i t i e s or area f o r r e t a rded and non re ta rded adu l t s i n the community 1 - 248 - C ( v i i ) CATEGORY MEASURE CRITERIA .SCORF PSYCHOLOGY SERVICE A * Se r v i c e i s prov ided i n the community 3 Nature o f Se r v i c e B * Some s e r v i c e i s prov ided i n the com-munity and some prov ided i n s p e c i a l i z e d f a c i l i t i e s / o r g a n i z a t i o n s / a r e a s 2 C * Se r v i c e i s prov ided i n f a c i l i t i e s / o r g an i z a t i o n s f o r mental r e t a r d a t i o n 1 A * Se r v i c e i s prov ided by i n d i v i d u a l p s y cho l og i s t s i n the community or by non des ignated agenc ies 3 Type o f Se r v i c e B * Some s e r v i c e i s p rov ided by des ignated and non. des ignated agenc ies and p r i v a t e— p s y cho l og i s t s 2 C * Se r v i c e i s prov ided by des igna ted a g e nc_i e s / fa c .11 I t i e s / i n d i v l dual p s y cho l og i s t s 1 A * Name o f s e r v i c e i s gene r i c and c o n s i s -t en t w i t h community psycho logy s e r v i c e s / p r a c t i c e s 3 Name o f Se r v i c e B * Name o f s e r v i c e i s ambiguous w i th respec t to i t s r e f e rence to r e t a rded or non r e t -arded persons 2 C * Name o f s e r v i c e i s s p e c i f i c f o r men ta l l y r e t a rded and/or d i s ab l ed persons 1 A * Se r v i c e i s l o c a t ed w i t h i n the community i n r e gu l a r p r o f e s s i ona l o f f i c e a c c e s s i b l e to members o f the community 3 Loca t ion o f Se r v i c e B * Serv i ce , i s l o ca t ed w i t h i n the community but w i t h o c ca s s i ona l access f o r men ta l l y r e ta rded or d i s ab l ed a du l t s 2 4 - 249 - C ( v i i i ) CATEGORY MEASURE CRITERIA SCORE A * Ac c e s s i b l e to and u t i l i z e d by non-men ta l l y re ta rded or d i s ab l e d adu l t s I n t eg r a t i o n o f Se