UBC Theses and Dissertations

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UBC Theses and Dissertations

Understanding and perceptions of parenting skills of persons with mental handicaps Maherali, Zuleikha Ahmed 1990

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THE UNDERSTANDING AND PERCEPTIONS OF PARENTING SKILLS OF PERSONS WITH MENTAL HANDICAPS by Zuleikha Ahmed Maherali B.A., University of British Columbia, 1986 B.Ed.,University of British Columbia, 1988 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF T H E REQUIREMENT FOR THE DEGREE OF MASTER OF ARTS in T H E FACULTY OF GRADUATE STUDIES THE DEPARTMENT OF EDUCATIONAL PSYCHOLOGY AND SPECIAL EDUCATION Faculty of Education We accept this thesis as conforming to the required standing T H E UNIVERSITY OF BRITISH COLUMBIA May 1990 (c) Zuleikha Ahmed Maherali In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the head of my department or by his or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department The University of British Columbia Vancouver, Canada / DE-6 (2/88) i i ABSTRACT The p u r p o s e o f t h i s s t u d y was t o i n v e s t i g a t e t h e u n d e r s t a n d i n g a n d t h e p e r c e p t i o n s o f p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s a n d t h e i r p e r c e p t i o n s o f t h e q u a l i t y a n d t h e a v a i l a b i l i t y o f s u p p o r t s e r v i c e s . P a r e n t i n g s k i l l s w e r e c o n s i d e r e d i n t e r r a s o f n u t r i t i o n a l a n d meal p l a n n i n g s k i l l s , d i s c i p l i n e a n d b e h a v i o u r management, home s a f e t y a n d e m e r g e n c y a nd i n t e r a c t i o n a n d s o c i a l s t i m u l a t i o n . S u p p o r t s were c o n s i d e r e d o f i n t e r m s o f f o r m a l a n d f a m i l y s e r v i c e s . An o p e n - e n d e d q u e s t i o n n a i r e was u s e d t o i n t e r v i e w 25 m e n t a l l y h a n d i c a p p e d m o t h e r s . F i n d i n g s i n d i c a t e d t h a t m o t h e r s p e r c e i v e d t h e p r o c e s s o f d i s c i p l i n i n g a n d p r o v i d i n g a s t i m u l a t i n g e n v i r o n m e n t a s t h e most d i f f i c u l t a s p e c t o f p a r e n t i n g . I n t e r m s o f t h e s u p p o r t s e r v i c e s , m o t h e r s were g e n e r a l l y s a t i s f i e d w i t h t h e a v a i l a b i l i t y a n d s o u r c e s o f f o r m a l s u p p o r t . H o w e v e r , i n t e r m s o f t h e q u a l i t y o f f o r m a l s u p p o r t , m o t h e r s i n d i c a t e d t h a t s u c h s u p p o r t s h o u l d be m o d i f i e d t o meet t h e i r n e e d s . M o t h e r s ' p e r c e p t i o n s o f f a m i l y s u p p o r t were d i f f e r e n t i a l l y a f f e c t e d by t h e i r m a r i t a l s t a t u s . The p r e s e n c e o f a s p o u s e i n t h e home and t h e o p p o r t u n i t y t o i n t e r a c t w i t h e x t e n d e d f a m i l y members were two f a c t o r s w h i c h a f f e c t e d t h e q u a l i t y o f f a m i l y s u p p o r t . I n t w o - p a r e n t f a m i l i e s , s p o u s a l s u p p o r t e n a b l e d t h e m o t h e r s t o d e a l more e f f e c t i v e l y w i t h t h e i r c h i l d r e n . F i n d i n g s a l s o i n d i c a t e d t h a t s u p p o r t f r o m e x t e n d e d f a m i l i e s was n o t a v a i l a b l e t o most m o t h e r s . i i i TABLE OF CONTENTS A b s t r a c t i i T a b l e o f C o n t e n t s i i i L i s t o f T a b l e s v L i s t o f F i g u r e s v i A c k n o w l e d g e m e n t v i i CHAPTER I . INTRODUCTION 1 R a t i o n a l e f o r R e s t r i c t i o n s 2 S o c i e t a l A t t i t u d e s 2 I n c a p a c i t y t o C o n t r a c t 3 S t e r i l i z a t i o n a s a C o n d i t i o n t o M a r r i a g e 5 C a n a d i a n J u d i c i a l H i s t o r y 6 The C a s e o f Eve 8 C u r r e n t Laws 10 P a r e n t s W i t h M e n t a l H a n d i c a p s 15 R e c e n t C o u r t C a s e s I n v o l v i n g A p p r e h e n s i o n 15 P u r p o s e o f t h e S t u d y 20 D e f i n i t i o n o f Terms 21 CHAPTER I I . REVIEW OF LITERATURE 23 The C o n c e p t o f P a r e n t i n g 24 Who i s a Competent P a r e n t ? 25 F a c t o r s A f f e c t i n g P a r e n t a l Competence 27 I n t e 11 i g e n c e 28 S o c i a l And E m o t i o n a l A d j u s t m e n t 29 The A v a i l a b i l i t y o f S u p p o r t S e r v i c e s 30 F o r m a l S u p p o r t S y s t e m 31 The Need f o r P r o f e s s i o n a l H e l p 31 F o r m a l S u p p o r t a n d P a r e n t i n g S k i l l s 31 Q u a l i t y o f P r o f e s s i o n a l S e r v i c e s 34 E v a l u a t i o n o f P a r e n t / T r a i n i n g W o r k s h o p s 34 C o u n s e l l i n g S e r v i c e s 35 F a m i l y S u p p o r t 36 B e n e f a c t o r t o P a r e n t S u p p o r t 36 CHAPTER I I I . METHODOLOGY 40 S t a t e m e n t o f P r o b l e m 40 I d e n t i f i c a t i o n a n d D e m o g r a p h i c I n f o r m a t i o n o f S u b j e c t s . . 4 0 I n s t r u m e n t 42 P i l o t S t u d y 43 I n t e r v i e w P r o c e d u r e s 44 D a t a A n a y s i s 44 CHAPTER I V . RESULTS 4 5 I n t e r v e n t i o n s f r o m t h e M i n i s t r y 45 P a r e n t i n g S k i l l s 51 N u t r i t i o n a l a n d M e a l P l a n n i n g S k i l l s 51 D i s c i p l i n e a n d B e h a v i o u r Managemnt 54 Home S a f e t y a n d Eme r g e n c y 57 I n t e r a c t i o n a n d S o c i a l S t i m u l a t i o n 63 I d e n t i f i c a t i o n a n d P e r c e p t i o n o f S u p p o r t S e r v i c e s 65 F o r m a l S u p p o r t 65 F a m i l y S u p p o r t 70 CHAPTER V. DISCUSSION AND CONCLUSIONS 72 H a n d i c a p s i n C h i l d r e n 72 I n t e r v e n t i o n s f r o m t h e M i n i s t r y 73 P a r e n t i n g S k i l l s 73 N u t r i t i o n a l na d M e a l P l a n n i n g S k i l l s 73 D i s c i p l i n e a n d B e h a v i o u r Management .' 74 Home S a f e t y a n d Emergency 74 I n t e r a c t i o n a n d S o c i a l S t i m u l a t i o n 75 S u p p o r t S e r v i c e s 76 S i m i l a r i t i e s i n F o r m a l a n d F a m i l y S u p p o r t 76 D i f f e r e n c e s B e t ween F o r m a l a n d F a m i l y S u p p o r t 76 F o r m a l S u p p o r t 77 F a m i l y S u p p o r t , 78 C o n c l u s i o n s o f t h e S t u d y 79 L i m i t a t i o n s o f t h e s t u d y 80 S u g g e s t i o n s f o r F u t u r e R e s e a r c h 80 REFERENCES 81 APPENDIX A 88 V L I S T OF TABLES T a b l e 1: D e m o g r a p h i c I n f o r m a t i o n o f M e n t a l l y H a n d i c a p p e d M o t h e r s 41 T a b l e 2: Number o f C h i l d r e n Removed P e r F a m i l y 46 T a b l e 3: F r e q u e n c y o f H a n d i c a p s i n C h i l d r e n b y G e n d e r . . . . 4 7 T a b l e 4: F r e q u e n c y o f M o t h e r s G i v i n g C o r r e c t R e s p o n s e s ... 51 T a b l e 5: T y p e s o f F o o d s P e r c e i v e d a s N u t r i t i o u s a n d Not N u t r i t i o u s 52 T a b l e 6: M e a l s S e r v e d a n d P e r c e i v e d as N u t r i t i o u s 53 T a b l e 7: M e a l s P e r c e i v e d a s N u t r i t i o u s a n d Not N u t r i t i o u s 54 T a b l e 8: O c c a s i o n s a s P e r c e i v e d t o be I m p o r t a n t t o D i s c i p l i n e C h i l d r e n 55 T a b l e 9: A d d i t i o n a l T y p e s o f S u p p o r t S e r v i c e s R e c e i v e d By M o t h e r s 66 T a b l e 10: M o t h e r s P e r c e i v i n g F a m i l i e s As S u p p o r t i v e 70 L I S T OF FIGURES F i g u r e 1: F r e q u e n c y o f H a n d i c a p s By G ender 49 F i g u r e 2: Mean Ages o f C h i l d r e n W i t h H a n d i c a p s ....50 F i g u r e 3: S t r a t e g i e s U s e d t o D i s c i p l i n e C h i l d r e n 56 F i g u r e 4: D i s t r i b u t i o n Of M e n t a l l y H a n d i c a p p e d M o t h e r s ' S a f e t y a n d E m e r g e n c y S k i l l s 60 F i g u r e 5: D i s t r i b u t i o n o f M e n t a l l y H a n d i c a p p e d M o t h e r s A t t e n d i n g P r e n a t a l C l a s s e s 67 F i g u r e 6: D i s t r i b u t i o n o f M e n t a l l y H a n d i c a p p e d M o t h e r s ' P e r c e p t i o n s o f Needs o f S e r v i c e s 69 v i i ACKNOWLEDGEMENTS I w o u l d l i k e t o e x p r e s s my s i n c e r e t h a n k s t o D r . Marg Csapo , D r . S a l l y Rogow, D r . A r t More a n d D r . Ken C u r t i s , whose s c h o l a r l y a d v i c e g r e a t l y h e l p e d t o i m p r o v e t h e q u a l i t y o f t h i s p r o j e c t . My s p e c i a l g r a t i t u d e g o e s t o D r . Marg Csapo whose c o u n s e l , w i s d o m a n d c o n t i n u i n g s u p p o r t s u s t a i n e d me t h r o u g h o u t t h i s p r o j e c t . A w o r d o f t h a n k s must a l s o go t o t h e l a r g e number o f p e r s o n n e l i n t h e o r g a n i z a t i o n s who h e l p e d t o e s t a b l i s h c o n t a c t w i t h p o t e n t i a l s u b j e c t s a n d a r r a n g e i n t e r v i e w s . I n a d d i t i o n s , I w o u l d a l s o l i k e t o t h a n k t h e f a m i l i e s who p a r t i c i p a t e d i n t h e s t u d y f o r s h a r i n g t h e i r t i m e a n d p e r s o n a l e x p e r i e n c e s w i t h me. I must a l s o e x p r e s s my g r a t i t u d e t o my f a m i l y , e s p e c i a l l y my p a r e n t s a n d my s i s t e r s , f o r t h e i r c o n t i n u o u s s u p p o r t a n d e n c o u r a g e m e n t . And f i n a l l y t o M a d a t , who came i n t o my l i f e when t h i s p r o j e c t was b e i n g done a n d gave me t h e i n s p i r a t i o n t o c o m p l e t e i t . 1 CHAPTER I . INTRODUCTION Many p e o p l e i n c o n t e m p o r a r y s o c i e t i e s s t i l l c o n t i n u e t o b e l i e v e t h a t p e r s o n s w i t h m e n t a l h a n d i c a p s l a c k t h e a b i l i t i e s a n d t h e s k i l l s r e q u i r e d f o r a d e q u a t e p a r e n t i n g ( H a a v i k , 1986; F e l d m a n , 1986; S c h m i d t , 1 9 8 9 ) . And c o n s e q u e n t l y , s e v e r a l q u e s t i o n s h a v e b e e n r a i s e d i n r e l a t i o n t o t h e i r a b i l i t y t o r e a r c h i l d r e n . Do t h e y h a v e a d e q u a t e p a r e n t i n g s k i l l s ? What t y p e s o f s u p p o r t s e r v i c e s a r e a v a i l a b l e t o a s s i s t them w i t h p a r e n t i n g ? C o u r t s a c r o s s C a nada a n d t h e U n i t e d S t a t e s have • i m p l e m e n t e d p o l i c i e s a n d r e g u l a t i o n s t o m i n i m i z e a n d s o m e t i m e s e l i m i n a t e t h e p o s s i b i l i t y o f p e o p l e w i t h m e n t a l h a n d i c a p s t o b e a r a n d r a i s e c h i l d r e n ( S c h m i d t , 1989; H a a v i k , 1 9 8 6 ) . T h e s e i n c l u d e t h e l a w s r e s t r i c t i n g o r p r o h i b i t i n g m a r r i a g e a n d t h e a c t i o n s t a k e n b y t h e c o u r t s t o p r e v e n t them f r o m r a i s i n g t h e i r c h i l d r e n ( R i o u x , 1987; S c h m i d t , 1 9 8 9 ) . S u c h a c t i o n s have v e r y o f t e n b e e n b a s e d on t h e a s s u m p t i o n t h a t p e r s o n s w i t h m e n t a l h a n d i c a p s l a c k t h e s k i l l s n e c e s s a r y f o r a d e q u a t e p a r e n t i n g . The p u r p o s e o f t h i s s t u d y i s t o i n v e s t i g a t e t h e u n d e r s t a n d i n g a n d t h e p e r c e p t i o n s o f p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s . I n a d d i t i o n , i t w i l l a l s o e x a m i n e t h e i r p e r c e p t i o n s o f t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f f o r m a l a n d f a m i l y s u p p o r t s e r v i c e s . T h i s c h a p t e r w i l l b r i e f l y o u t l i n e t h e r a t i o n a l e s t h a t h ave commonly b e e n u s e d f o r r e s t r i c t i n g m a r r i a g e o f p e r s o n s w i t h m e n t a l h a n d i c a p s . I n a d d i t i o n , i t w i l l a l s o d i s c u s s t h e l e g a l f r a m e w o r k o f t h e r i g h t s o f p e r s o n s w i t h m e n t a l h a n d i c a p s t o m a r r y a n d r a i s e c h i l d r e n a n d f i n a l l y , i t w i l l p r e s e n t t h r e e r e c e n t c o u r t c a s e s i n w h i c h c h i l d r e n o f p a r e n t s w i t h h a n d i c a p s w e re a p p r e h e n d e d on t h e b a s i s o f i n a d e q u a t e p a r e n t i n g . S e v e r a l r a t i o n a l e s e x i s t w h i c h r e s t r i c t o r p r o h i b i t t h e m e n t a l l y h a n d i c a p p e d t o m a r r y : s o c i e t a l a t t i t u d e s , i n c a p a c i t y t o c o n t r a c t a n d s t e r i l i z a t i o n (Shaman, 1978; H a a v i k , 1986; S c h m i d t , 1 9 8 9 ) . RATIONALE FOR RESTRICTIONS S o c i e t a l A t t i t u d e s S o c i e t y ' s a t t i t u d e s t o w a r d s p e r s o n s w i t h m e n t a l h a n d i c a p s h a v e p l a y e d a m a j o r r o l e i n t h e d e v e l o p m e n t o f laws a n d r e g u l a t i o n s w h i c h r e s t r i c t o r p r o h i b i t p e r s o n s w i t h m n t a l h a n d i c a p s f r o m m a r r y i n g ( H a a v i k & M e n n i n g e r , 1981; Shaman, 1 9 7 8 ) . F o r y e a r s , s o c i e t i e s a c r o s s a l l c u l t u r e s have f r o w n e d upon t h e r i g h t a n d t h e n e e d o f m e n t a l l y h a n d i c a p p e d a d u l t s t o m a r r y a n d r a i s e f a m i l i e s . S u c h an a t t i t u d e may w e l l be t h e p r o d u c t o f t h e o l d b e l i e f s t h a t m e n t a l l y h a n d i c a p p e d p e o p l e were subhuman a n d i d i o t i c a n d a s a r e s u l t , d i d n o t h a v e t h e n e e d f o r l o v e a n d a f f e c t i o n , b o t h o f w h i c h a r e i n t e g r a l p a r t o f m a r r i a g e ( H a a v i k , 1986; Sha n a n , 1 9 7 8 ) . A c c o r d i n g t o Shaman ( 1 9 7 8 ) , p e r s o n s w i t h m e n t a l h a n d i c a p s were a l s o s t i g m a t i s e d w i t h d e r o g a t o r y l a b e l s b y t h e s o - c a l l e d " e d u c a t e d " members o f s o c i e t y . He s t a t e d t h a t i n t h e c a s e o f Buck v. B e l l ( 1 9 2 3 ) : ...even someone as e n l i g h t e n e d ( f o r h i s d a y ) J u s t i c e Holmes once d e s c r t i b e d m e n t a l l y r e t a r d e d p e r s o n s as d e g e n e r a t e s , c r i m i n a l s , a n d u n f i t . (Shaman,19 78,p.69 ) . F u r t h e r m o r e , J u s t i c e H o l m e s ' f i n a l c o u r t d e c i s i o n o f i m p l e m e n t i n g e u g e n i c s t e r i l i z a t i o n as t h e s t a t e g o a l was a l s o a c c o m p a n i e d by d e m e a n i n g comments ( H a a v i k & M e n n i n g e r , 1981 ) . . . . J u s t i c e H o l m e s ' c o n c e r n w i t h s o c i e t y b e i n g "swamped w i t h i n c o m p e t e n t s " , h i s p r e f e r e n c e o f p r e v e n t i o n f o r " d e g e n e r a t e o f f s p r i n g , r a t h e r t h a n h a v i n g t o e x e c u t e them o r l e t them s t a r v e , a n d h i s i n t o l e r a n c e o f more t h a n " t h r e e g e n e r a t i o n s o f i m b e c i l e s " l e a v e no d o u b t t h a t he a c c e p t e d b o t h t h e g o a l o f i m p r o v e m e n t o f t h e r a c e t h r o u g h e l i m i n a t i o n o f u n d e s i r a b l e t r a i t s a n d t h e mthod o f s t e r i l i z i n g p e o p l e who h a d t h e s e t r a i t s . . . . ( H a a v i k & M e n n i n g e r , 1 9 8 1 , p . 1 2 6 ) . A n o t h e r common a t t i t u d e t o w a r d p e r s o n s w i t h m e n t a l h a n d i c a p s c o n s i d e r e d them as b e i n g " e t e r n a l c h i l d r e n " ( H a a v i k & M e n n i n g e r , 1 9 8 1 ) . T h i s v i e w was b a s e d on t h e p r e m i s e t h a t t h e y were i n d i v i d u a l s w i t h o u t t h e n e e d o f i n t i m a t e r e l a t i o n s h i p s . ( H a a v i k & M e n n i n g e r , 1 9 8 1 ) . H owever, v e r y o f t e n , t h e y w e re r e g a r d e d as b e i n g u n a b l e t o c o n t r o l t h e i r s e x u a l n e e d s a n d as a r e s u l t , e n g a g e d i n i n d e c e n t s e x u a l a c t s ( J o h n s o n , 1 9 7 9 ) . I n c a p a c i t y t o C o n t r a c t The s e c o n d r e a s o n f o r r e s t r i c t i n g p e r s o n s w i t h m e n t a l h a n d i c a p s f r o m m a r r y i n g i s t h e i r p e r c e i v e d i n c a p a c i t y t o c o n t r a c t ( H a a v i k & M e n i n g e r , 1981; S h a n a n , 1978; D i c k i n & Ryan, 1 9 8 3 ) a n d t h e i r p e r c e i v e d i n a b i l i t y t o a n t i c i p a t e c o n s e q u e n c e s o f m a r r i a g e ( H a a v i k , 1981; S h a n a n , 1978; F l o o r , B a x t e r , R o s e n , & Z i s f e i n , 1 9 7 5 ) . I t was commonly assumed t h a t t h e y were n o t c a p a b l e o f u n d e r s t a n d i n g t h e c o n c e p t o f m a t r i m o n y n o r o f e n t e r i n g t h e m a r r i a g e c o n t r a c t ( F l o o r e t a l . , 1 9 7 5 ) . As a r e s u l t , t h e y f a i l e d t o u n d e r s t a n d t h e d u t i e s a n d r e s p o s i b i 1 i t i e s t h a t were i n v o l v e d i n t h e p r o c e s s . F a i l u r e t o r e c o g n i s e s u c h demands w o u l d l e a d t o p r o b l e m s i n m a r i t a l a d j u s t m e n t ( H a a v i k & M e n n i n g e r , 1981; S h a n a n , 1 9 7 8 ) . S u c h an a s s u m p t i o n was c o n s i s t e n t w i t h t h e r a t i o n a l i z a t i o n t h a t due t o t h e i r i n a b i l i t y t o e n t e r i n t o c o n t r a c t , s o c i e t y must p r o t e c t t h e m e n t a l l y r e t a r d e d f r o m e n t e r i n g i n t o a m a r r i a g e c o n t r a c t ( H a a v i k & M e n n i n g e r , 1981; F l o o r e t a l . , 1975 ) . The l a c k o f c o n s i s t e n c y r e g a r d i n g what c o n s t i t u t e s a s a t i s f a c t o r y m a r i t a l a d j u s t m e n t among n o n - h a n d i c a p p e d p e o p l e makes t h e s t u d y o f m a r i t a l s u c c e s s among t h e m e n t a l l y h a n d i c a p p e d e v e n more d i f f i c u l t ( A n d r o n & S t u r m , 1971; M a t t i n s o n , 1 9 7 1 ; H a a v i k , 1 9 8 6 ) . M a t t i n s o n ' s ( 1 9 7 1 ) s t u d y o f m a r i t a l a d j u s t m e n t o f m e n t a l l y h a n d i c a p p e d i n d i v i d u a l s i n d i c a t e d t h a t t h e m a j o r i t y h a d a d j u s t e d w e l l a n d i n a d d i t i o n , r e c e i v e d a l o t o f m o r a l a n d e m o t i o n a l s u p p o r t f r o m t h e i r s p o u s e s ( M a t t i n s o n , 1971; H a a v i k , 1 9 8 1 ) . A n d r o n & S t u r m ( 1 9 7 1 ) f o u n d t h a t t h e i r r e s u l t s were c o n s i s t e n t w i t h t h o s e o f M a t t i n s o n ' s i n t h a t t h e m a j o r i t y o f t h e c o u p l e s m a i n t a i n e d a h e a l t h y , m a r i t a l r e l a t i o n s h i p . H o w e v e r , a s t u d y 5 i n N o r t h e r n I r e l a n d f o u n d t h a t a p p r o x i m a t e l y 4 0 % o f t h e men and 50% o f t h e women h a d p r o b l e m s i n m a r i t a l a d j u s t m e n t ( S c a l l y , 1 9 7 3 ) . S t u d i e s t o d e t e r m i n e t h e f a c t o r s w h i c h w o u l d p r e d i c t m a r i t a l s u c c e s s h a v e f a i l e d t o i d e n t i f y a ny s i g n i f i c a n t v a r i a b l e s ( H a a v i k & M e n n i n g e r , 1 9 8 1; M a t t i n s o n , 1 9 7 1; S c a l l y , 1 9 7 3 ) . F o r e x a m p l e , M a t t i n s o n ' s ( 1 9 7 1 ) s t u d y showed no c o r r e l a t i o n b e t w e e n m a r i t a l a d j u s t m e n t a n d IQ, o r i n s t i t u t i o n a l i z a t i o n ( M a t t i n s o n , 1 9 7 1 ; F l o o r e t a l , 1975 ). F u r t h e r m o r e no c o r r e l a t i o n b e t w e e n m a r i t a l a d j u s t m e n t a n d t h e d e g r e e o f h a n d i c a p was f o u n d i n a s t u d y b y C r a f t a n d C r a f t ( 1 9 7 8 ) . One o f t h e common c o n t r o v e r s i e s p l a g u i n g t h e i s s u e o f t h e m a r r i a g e c o n t r a c t a n d t h e r e s p o n s i b i l i t i e s e n t a i l e d w i t h i n i s t h e s e p a r a t i o n o f t h e r i g h t s a n d r e s p o n s i b i l i t i e s o f m a r r i a g e f r o m t h e r i g h t s a n d r e s p o n s i b i l i t i e s o f p a r e n t h o o d ( H a a v i k , 1986; H e r t z , 1 9 7 9 ) . As a r e s u l t , c o u r t s have a s s e r t e d t h a t m e n t a l l y h a n d i c a p p e d a d u l t s s h o u l d o n l y be a l l o w e d t o m a r r y i f t h e y have u n d e r g o n e s t e r i l i z a t i o n (Shaman, 1978; I n s t i t u t e o f Law R e s e a r c h & R e f o r m : A l b e r t a , 1988 ) ). S t e r i l i z a t i o n As a C o n d i t i o n t o M a r r i a g e The d e c i s i o n o f w h e t h e r t o p r o c r e a t e made b y c o m p e t e n t c o n s e n t i n g i n d i v i d u a l s i s r e c o g n i s e d b y t h e U.S Supreme C o u r t as b e i n g w i t h i n t h e d o m a i n o f c o n s t i t u t i o n a l l y p r o t e c t e d r i g h t s . I n t h e c a s e o f E i s a n d t h v. B a i r d ( 1 9 7 2 ) , t h e U.S. Supreme C o u r t s t a t e d t h a t t h e r i g h t t o b e a r c h i l d r e n was c o n s t i t u t i o n a l l y p r o t e c t e d ( D i c k i n & R y a n , 1 9 8 3 ) . I m p o s i n g i n v o l u n t a r y s t e r i l i z a t i o n p r i o r t o m a r r i a g e o r an age r e q u i r e m e n t ( H a a v i k , 1 9 8 1; H e r t z , 1 9 7 9 ) b e y o n d t h e c h i l d b e a r i n g y e a r s i n d i c a t e s t h a t t h e p r e v e n t i o n o f p r o c r e a t i n g 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 was a n o t h e r c o n c e r n j u s t i f y i n g m a r r i a g e p r o h i b i t i o n ( S c h m i d t , 1989; H a a v i k & M e n n i n g e r , 1 9 8 6 ) . T h i s was e v i d e n t i n s t a t u t e s o f N e b r a s k a w h i c h p r o h i b i t e d p e r s o n s w i t h m e n t a l h a n d i c a p s f r o m m a r r y i n g u n l e s s t h e y h a d b e e n s t e r i l i z e d (Shaman, 1 9 7 8 ) . An e x t e n s i v e r e v i e w o f l e g a l s t a t u t e s i n d i c a t e d t h a t many s t a t e s s t i l l have p o l i c i e s a n d l a w s w h i c h p r o h i b i t o r r e s t r i c t m a r r i a g e o f p e r s o n s w i t h m e n t a l h a n d i c a p s u n l e s s s t e r i l i z a t i o n h a s t a k e n p l a c e . T h e s e i n c l u d e d C a l i f o r n i a , D e l a w a r e , G e o r g i a , I d a h o , Iowa, K e n t u c k y , M i c h i g a n , M i n n e s o t a , M i s s o u r i , N e b r a s k a , N e v a d a , New J e r s e y , S o u t h C a r o l i n a , New Y o r k , , N o r t h C a r o l i n a , N o r t h D a k o t a , O h i o , O k lahoma, O r e g o n , P e n n y s l v a n i a , S o u t h D a k o t a , T e n n e s s e , V e r m o n t , V i r g i n i a , W i s c o n s i n , Wyoming a n d New M e x i c o ( H a a v i k , 1 9 8 6 ) . CANADIAN J U D I C I A L HISTORY I n 1 9 3 3 , b o t h A l b e r t a a n d B r i t i s h C o l u m b i a e n a c t e d l e g i s l a t i o n w h i c h a u t h o r i s e d n o n - t h e r a p e u t i c s t e r i l i s a t i o n on e u g e n i c g r o u n d s ( R i o u x , 1987; I n s t i t u t e o f Law, R e s e a r c h and R e f o r m : A l b e r t a , 1 9 8 8 ) . The e n a c t m e n t o f l e g i s l a t i o n was u n d o u b t e d l y i n f l u e n c e d b y t h e j u d g e m e n t f o l l o w i n g t h e c a s e o f Buck v. B e l l w h i c h g a v e power t o c o u r t s a u t h o r i z e i n v o l u n t a r y n o n - t h e r a p e u t i c s t e r i l i z a t i o n i n t h e U n i t e d S t a t e s ( R i o u x , 1 9 8 7 ; I n s t i t u t e o f Law R e s e a r c h a n d R e f o r m : A l b e r t a , 1 9 8 8 ) . O r i g i n a l l y , b o t h t h e A l b e r t a n a n d t h e B r i t i s h C o l u m b i a n S e x u a l S t e r i l i z a t i o n A c t s c a l l e d f o r t h e f o r m a t i o n o f " E u g e n i c s B o a r d s " t o d e t e r m i n e when s t e r i l i z a t i o n s h o u l d be i m p o s e d . . . . t h a t t h e p e r s o n m i g h t s a f e l y be d i s c h a r g e d i f t h e d a n g e r o f p r o c r e a t i o n w i t h i t s a t t e n d e n t r i s k o f m u l t i p l i c i t y o f t h e e v i l b y t r a n s m i s s i o n o f t h e d i s a b i l i t y t o p r o g e n y were e l i m i n a t e d . ( I n s t i t u t e o f Law, R e s e a r c h a n d R e f o r m : A l b e r t a , 1988, p.171 ) . The A c t was r e v i e w e d i n 1937 a n d amendments were a d d e d : i ) m e n t a l l y d e f e c t i v e p e r s o n s were s p e c i f i c a l l y m e n t i o n e d f o r t h e f i r s t t i m e . i i ) c r i t e r i a f o r s t e r i l i z a t i o n were n o t s o l e l y g e n e t i c. i i i ) c o n s e n t o f t h e p e r s o n t o be s t e r i l i s e d o r o f t h e s p o u s e , p a r e n t o r g u a r d i a n was n e e d e d i n t h e c a s e o f p s y c h o l o g i c a l l y d e f e c t i v e p e r s o n s . The n e e d f o r c o n s e n t i n t h e c a s e o f m e n t a l l y h a n d i c a p p e d d e f e c t i v e p e r s o n s was removed.. ( I n s t i t u t e o f Law R e s e a r c h and R e f o r m : A l b e r t a , 1 9 8 8 , p.175 ) . D u r i n g t h e t i m e t h a t t h i s A c t was i n e f f e c t , a p p r o x i m a t e l y 4730 c a s e s were p r o p o s e d f o r s t e r i l i z a t i o n , a n d more t h a n h a l f o f t h e s e c a s e s were a p p r o v e d . P e r h a p s t h e most s i g n i f i c a n t c a s e i n t h e C a n a d i a n j u d i c i a l h i s t o r y i n v o l v i n g s t e r i l i z a t i o n was t h e c a s e o f Eve ( R i o u x , 1 9 8 7 ) . The Supreme C o u r t o f C a n a d a , on O c t o b e r 26, 1986, r u l e d t h a t n e i t h e r t h e c o u r t nor t h e p a r e n t s c o u l d a u t h o r i z e t h e s t e r i l i z a t i o n upon Eve ( R i o u x , 1 9 8 7 ) . The C a s e o f Eve Eve was a t w e n t y f i v e y e a r o l d , p h y s i c a l l y a t t r a c t i v e , m i l d l y t o m o d e r a t e l y m e n t a l l y r e t a r d e d woman w i t h l i m i t e d l e a r n i n g c a p a c i t y . Eve was d a t i n g a y o u n g man i n h e r s c h o o l . E v e ' s m o t h e r p e t i t i o n e d t h e c o u r t t o a u t h o r i s e E v e ' s s t e r i l i z a t i o n . D u r i n g t h e c o u r s e o f t h e t r i a l , t h e j u d g e s t a t e d t h a t : ..she i s d e s c r i b e d a s b e i n g a p l e a s a n t a n d an a f f e c t i o n a t e p e r s o n , who, p h y s i c a l l y , i s an a d u l t p e r s o n , q u i t e c a p a b l e o f b e i n g a t t r a c t e d t o , as w e l l a s a t t r a c t i v e t o t h e o p p o s i t e s e x . W h i l e she m i g h t be a b l e t o c a r r y o u t t h e m e c h a n i c a l d u t i e s o f a m o t h e r , u n d e r s u p e r v i s i o n , s h e i s i n c a p a b l e o f b e i n g a m o t h e r i n a n y s e n s e . . s h e w o u l d h a v e no c o n c e p t o f t h e i d e a o r m a r r i a g e ; or i n d e e d , t h e c o n s e q u e n t i a l r e l a t i o n s h i p b e t w e e n i n t e r c o u r s e , p r e g n a n c y and b i r t h . ( I n s t i t u t e o f Law R e s e a r c h a n d R e f o r m : A l b e r t a , 1 9 8 9 , p . 6 5 ) . A d v o c a c y g r o u p s s u c h as t h e C a n a d i a n A s s o c i a t i o n f o r Community L i v i n g a n d t h e Consumer A d v i s o r y C o m m i s s i o n a r g u e d t h a t a n y d e c i s i o n w h i c h w o u l d a u t h o r i s e t h e o p e r a t i o n w i t h o u t t h e c o n s e n t o f t h e p a r t y i n v o l v e d , w o u l d c l e a r l y v i o l a t e t h e b a s i c r i g h t s o f t h a t p e r s o n ( R i o u x , 1 9 8 7 ) . They p r e s e n t e d t h e Supreme C o u r t o f C a n a d a w i t h t h e f o l l o w i n g a r g u m e n t s : i ) T h e r e i s no a u t h o r i t y u n d e r p r o v i n c i a l l e g i s l a t i o n f o r a n o n - t h e r a p e u t i c s t e r i l i z a t i o n . i i )The i n h e r e n t j u r i s d i c t i o n o f t h e c o u r t s s h o u l d o n l y be u s e d t o o r d e r a t h e r a p e u t i c p r o c e d u r e . i i i ) The c o u r t s s h o u l d be i n v o l v e d where i t i s c l e a r t h a t t h e i n d i v i d u a l c a n n o t c o n s e n t p e r s o n a l l y , t h e a d j u d i c a t i o n b e i n g r e s t r i c t e d t o w h e t h e r t h e s t e r i l i z a t i o n i s t h e r a p e u t i c . i v ) The c o u r t s h o u l d be s a t i s f i e d t h a t t h e r e i s c l e a r a n d c o n v i n c i n g e v i d e n c e t h a t s t e r i l i z a t i o n i s a p p r o p r i a t e . v ) I f s t e r i l i z a t i o n c a n be o r d e r e d u n d e r p a r e n s p a t r i e a n d w i t h o u t v i o l a t i n g t h e C h a r t e r , t h e n c e r t a i n c o n d i t i o n s must be met. v i ) N o n - t h e r a p e u t i c s t e r i l i z a t i o n i s a v i o l a t i o n o f s e c t i o n 7 o f t h e C h a r t e r : l i b e r t y a n d s e c u r i t y ( R i o u x , 1 987, p . 2 8 ) . The f i n a l d e c i s i o n i n t h e c a s e o f Eve was t h a t e x c e p t f o r t h e r a p e u t i c p u r p o s e s , n e i t h e r t h e p a r e n t s n o r t h e c o u r t h a d t h e r i g h t t o impose s t e r i l i z a t i o n upon p e r s o n s s o l e l y f o r t h e r e a s o n o f m e n t a l h a n d i c a p . The u n a n i m o u s judg e m e n t of t h e Supreme C o u r t was b a s e d on two p r e m i s e s . F i r s t , t h e C o u r t c o n t e n d e d t h a t n o n - t h e r a p e u t i c s t e r i l i z a t i o n s were b e y o n d t h e r e a c h o f t h e c o u r t s ' p a r e n s p a t r i e j u r i s d i c t i o n . As s t a t e d i n t h e j u d g e m e n t : . . . t h e g r a v e i n t r u s i o n on a p e r s o n ' s r i g h t s a n d t h e c e r t a i n p h y s i c a l damage t h a t e n s u e s f r o m non-t h e r a p e u t i c s t e r i l i z a t i o n w i t h o u c o n s e n t , when comp a r e d t o t h e h i g h l y q u e s t i o n a b l e a d v a n t a g e s t h a t c a n r e s u l t f r o m i t , h ave p e r s u a d e d me t h a t i t can n e v e r s a f e l y be d e t e r m i n e d t h a t s u c h a p r o c e d u r e i s f o r t h e b e n e f i t o f t h a t p e r s o n . A c c o r d i n g l y , t h e p r o c e d u r e s h o u l d n e v e r be a u t h o r i s e d f o r n o n - t h e r a p e u t i c p u r p o s e s u n d e r t h e p a r e n s p a t r i a e j u r i s d i c t i o n . ( I n s t i t u t e o f Law R e s e a r c h & R e f o r m : A l b e r t a , 1988, p . 6 4 ) . S e c o n d l y , t h e c o u r t h e l d t h a t i f n o n - t h e r a p e u t i c s t e r i l i s a t i o n s a r e t o be a u t h o r i s e d , t h e n t h e C a n a d i a n j u r i s d i c t i o n must t a k e t h e a p p r o p r i a t e a c t i o n t o e n a c t l e g i s l a t i o n . I f s t e r i l i z a t i o n o f t h e m e n t a l l y i n c o m p e t e n t i s t o be a d o p t e d as d e s i r a b l e f o r g e n e r a l s o c i a l p u r p o s e s , t h e l e g i s l a t u r e i s t h e a p p r o p r i a t e b o d y t o do s o . I t i s i n a p o s i t i o n t o i n f o r m i t s e l f a n d i t i s a t t u n e d t o t h e f e e l i n g s o f t h e p u b l i c i n m a k i n g p o l i c y i n t h i s s e n s i t i v e a r e a . ( R i o u x , 1 9 8 7 , p . 4 3 ) . And f i n a l l y , t h e Supreme C o u r t a s s e r t e d t h a t t h e r e a s o n o f " b e s t i n t e r e s t s " a s t h e b a s i s o f p r e v i o u s j u d g e m e n t s was n o t o n l y i n s u f f i c i e n t b u t i t was a l s o d e p r i v i n g . .. t h e b e s t i n t e r e s t s t e s t i s s i m p l y n o t s u f f i c i e n t l y p r e c i s e o r a w o r k a b l e t o o l t o p e r m i t t h e p a r e n s p a t r i a e power t o be u s e d i n s i t u a t i o n s l i k e t h e p r e s e n t . . . I t i s d i f f i c u l t t o i m a g i n e a c a s e i n w h i c h n o n - t h e r a p e u t i c s t e r i l i z a t i o n c o u l d p o s s i b l y be o f b e n e f i t t o t h e p e r s o n on b e h a l f o f whom t h e c o u r t p r o p o s e s t o a c t . ( R i o u x , 1 9 8 7 , p . 4 6 ) . C u r r e n t Laws R e g a r d l e s s o f t h e n a t u r e o f t h e f u t u r e l e g i s l a t i o n , c r i t i c s o f s t e r i l i s a t i o n m a i n t a i n t h a t t h e r i g h t s o f p e r s o n s w i t h m e n t a l h a n d i c a p s a r e n o t o n l y b e i n g c o m p r o m i s e d b u t a r e a l s o b e i n g t o t a l l y d e n i e d when t h e y u n d e r g o n o n - t h e r a p e u t i c s t e r i l i z a t i o n ( H a a v i k , 1986; R i o u x , 1 9 8 7 ) . P r o p o n e n t s o f t h i s a r g u ment a s s e r t t h a t s u c h a p r o c e d u r e i n f r i n g e s upon t h e r i g h t s t o p r o c r e a t e , t o s e c u r i t y o f t h e p e r s o n , a n d t o e q u a l i t y b e f o r e t h e l a w . A l t h o u g h t h e r i g h t t o p r o c r e a t e i s n o t e x p l i c i t l y r e c o g n i s e d i n C a n a d i a n j u r i s p r u d e n c e , i t s a d o p t i o n o f i n t e r n a t i o n a l a g r e e m e n t s w h i c h i m p l y p r o c r e a t i v e r i g h t s makes t h e c o u r t s somewhat r e s p o n s i b l e f o r s u c h r i g h t s o f p e r s o n s w i t h m e n t a l h a n d i c a p s . E x a m p l e s o f s u c h d o c u m e n t s a r e t h e U n i v e r s a l D e c l a r a t i o n o f Human R i g h t s ( 1 9 4 8 ) a nd t h e 1968 P r o c l a m a t i o n o f T e h e r a n (Law R e f o r m a n d C o m m i s s i o n , 1979 ). As s t a t e d i n A r t i c l e 1 6 ( i ) o f t h e U n i v e r s a l D e c l a r a t i o n o f Human R i g h t s : Men a n d women o f f u l l a g e , w i t h o u t a n y l i m i t a t i o n due t o r a c e , n a t i o n a l i t y o r r e l i g i o n , h a v e t h e r i g h t s t o m a r r y a n d t o f o u n d a f a m i l y . T h e y a r e e n t i t l e d t o e q u a l r i g h t s as t o m a r r i a g e , d u r i n g m a r r i a g e , a n d a t i t s d i s s o l u t i o n . ( U n i t e d N a t i o n s , 1 988, p . l ) . The P r o c l a m a t i o n o f T e h e r a n ( 1 9 6 8 ) s t a t e s t h a t : The p r o t e c t i o n o f t h e f a m i l y a n d o f t h e c h i l d r e m a i n s t h e c o n c e r n o f t h e i n t e r n a t i o n a l c o mmunity. P a r e n t s have a b a s i c r i g h t s t o d e t e r m i n e f r e e l y a n d r e s p o n s i b l y t h e number a n d t h e s p a c i n g o f c h i l d r e n . ( U n i t e d N a t i o n s , 1 988, p . 4 3 ) . From t h e s e d o c u m e n t s , one c a n p e r s o n s , i n c l u d i n g p e r s o n s w i t h l o g i c a l l y assume m e n t a l h a n d i c a p s , t h a t a l l hav e b o t h t h e r i g h t t o be f r e e f r o m i n v o l u n t a r y s t e r i l i z a t i o n a n d t h e f r e e d o m o f c h o i c e t o have s t e r i l i z a t i o n . A c c o r d i n g t o T a r n o p o l s k y ( 1 9 7 5 ) , t h e C a n a d i a n B i l l o f R i g h t s ( 1 9 7 0 ) was y e t a n o t h e r t o o l w h i c h e n s u r e d e q u a l i t y b e f o r e t h e l a w . T a r n o p o l s k y ( 1 9 7 5 ) a r g u e d t h a t t h e p r e s u m p t i o n o f s t e r i l i s a t i o n a s a p r o t e c t i v e m e a s u r e c o u l d n e v e r be e a s i l y j u s t i f i e d , a s i t w o u l d d e p r i v e t h e m e n t a l l y h a n d i c a p p e d o f t h e r i g h t t o p a r t i c i p a t e i n s e x u a l a c t s . The B i l l o f R i g h t s f u r t h e r g u a r a n t e e d s e c u r i t y o f a l l i n d i v i d u a l s a nd t h e r i g h t s n o t t o be d e p r i v e d t h e r e o f e x c e p t by due p r o c e s s o f l a w . The P r e a m b l e t o t h e C h a r t e r o f R i g h t s a n d F reedom e x p l i c i t l y a c k n o w l e d g e s t h a t a l l p e r s o n s a r e e q u a l b e f o r e t h e l a w r e g a r d l e s s o f r a c e , e t h n i c o r i g i n o r s e x . However, t h e r e l a t i o n s h i p o f t h e C h a r t e r t o s t e r i l i z a t i o n r e m a i n s , as y e t , a m b i g u o u s ( I n s t i t u t e o f Law, R e s e a r c h & R e f o r m , 1 9 8 9 ) . T h e r e a r e t h r e e m a j o r s e c t i o n s o f t h e C h a r t e r w h i c h n e e d t o be a d d r e s s e d . Two o f t h e s e c t i o n s , S e c t i o n s 7 a n d 12, came i n t o f o r c e on A p r i l 17, 1982. S e c t i o n 7 p r o t e c t s t h e r i g h t t o l i f e , l i b e r t y a n d s e c u r i t y o f t h e p e r s o n ( V o g e l , 1 9 8 7 ) . T h i s s e c t i o n s t a t e s : E v e r y o n e h a s t h e r i g h t t o l i f e , l i b e r t y , a n d s e c u r i t y o f t h e p e r s o n a n d t h e r i g h t n o t t o be d e p r i v e d t h e r e o f e x c e p t i n a c c o r d a n c e w i t h t h e p r i n c i p l e s o f f u n d a m e n t a l j u s t i c e . ( V o g e l , 1987 , p . 3 2 ) S e c t i o n 12 o f t h e C h a r t e r p r o h i b i t s a n y t y p e o f e x p o s u r e t o c r u e l t y a n d p u n i s h m e n t . I t s t a t e s : E v e r y o n e h a s t h e r i g h t n o t t o be s u b j e c t e d t o a n y c r u e l a n d a n y u n u s u a l t r e a t m e n t or p u n i s h m e n t . ( V o g e l , 1 9 8 7 , p . 3 3 ) . F i n a l l y , t h e t h i r d s e c t i o n , S e c t i o n 1 5 , came i n t o f o r c e on j u s t b e f o r e t h e Eve c a s e was p r e s e n t e d i n c o u r t . T h i s s e c t i o n i s c o n c e r n e d w i t h t h e p r o t e c t i o n and t h e p r o v i s i o n o f e q u a l i t y . r i g h t s . I t s t a t e s : 1) E v e r y i n d i v i d u a l i s e q u a l b e f o r e a n d u n d e r t h e law a n d h a s t h e r i g h t t o t h e e q u a l p r o t e c t i o n a n d e q u a l b e n e f i t o f t h e l a w w i t h o u t d i s c r i m i n a t i o n a nd i n p a r t i c u l a r , w i t h o u t d i s c r i m i n a t i o n b a s e d on r a c e , n a t i o n a l o r e t h n i c o r i g i n , c o l o r , r e 1 i g i o n , s e x age or m e n t a l o r p h y s i c a l d i s a b i l i t y . 2) S u b s e c t i o n ( 1 ) d o e s n o t p r e c l u d e a n y l a w , p r o g r a m o r a c t i v i t y t h a t h a s a s i t s o b j e c t t h e a m e l i o r a t i o n o f c o n d i t i o n s o f d i s a d v a n t a g e d i n d i v i d u a l s or g r o u p s i n c l u d i n g t h o s e t h a t a r e d i s a d v a n t a g e d b e c a u s e o f r a c e , n a t i o n a l o r e t h n i c o r i g i n , c o l o r , r e l i g i o n , s e x age o r m e n t a l d i s a b i 1 i t y . ( I n s t i t u t e o f L a w , R e s e a r c h & R e f o r m : A l b e r t a , 1988 , p.62 ) . A l t h o u g h S e c t i o n 1 5 ( 2 ) e n u n c i a t e s t h e b a s i c r i g h t s r e g a r d l e s s o f p h y s i c a l o r m e n t a l d i s a b i l i t y , i t s a p p l i c a t i o n t o n o n - t h e r a p e u t i c s t e r i l i z a t i o n s t i l l r e m a i n s t o be an a r e a t h a t h a s n o t b e e n a d d r e s s e d b y t h e j u d i c i a l s y s t e m s However, i n d e c l a r i n g i t s judgement i n t h e c a s e o f E v e , t h e Supreme C o u r t h a s u n d o u b t e d l y o p e n e d up a new c h a p t e r w h i c h i s f a c e d w i t h f o r m u l a t i n g l e g i s l a t i v e p o l i c i e s w h i c h a r e i n 1 4 t u r n c o n s i s t e n t w i t h t h e t e n e t s o f t h e C h a r t e r ( I n s t i t u t e o f Law, R e s e a r c h & R e f o r m : A l b e r t a , 1 9 8 9 ) . I n C a n a d a , a s y e t , t h e r e i s no s p e c i f i c s t e r i l i z a t i o n s t a t u t e ( R i o u x , 1987; I n s t i t u t e o f Law, R e s e a r c h & R e f o r m : A l b e r t a , 1989 ). The A c t was r e p e a l e d i n 1972 w h i c h l e f t b o t h B.C. a n d A l b e r t a w i t h o u t s p e c i f i c s t a t u t e s on s t e r i l i z a t i o n . A c c o r d i n g t o r e c e n t r e p o r t by t h e I n s t i t u t e o f Law R e s e a r c h a n d R e f o r m i n A l b e r t a ( 1 9 8 9 ) , c u r r e n t p o l i c y i s f o u n d u n d e r t h e H o s p i t a l s A c t o f A l b e r t a w h i c h t r e a t s h y s t e r e c t o m y and s t e r i l i z a t i o n s e p a r a t e l y . The A c t p r o v i d e s t h a t : i ) A c o n s u l t a t i o n b y a n o t h e r p h y s i c i a n p r e f e r a b l y one who i s a s p e c i a l i s t i n t h e a p p r o p r i a t e s p e c i a l t y s h a l l be h e l d f o r a l l . . . c ) h y s t e r c t o m i e s i n p a t i e n t s u n d e r 40 y e a r s o f a g e , u n l e s s a d e q u a t e p r o v i s i o n t o p r e v e n t c r i m i n a l a b o r t i o n s i s made i n t h e m e d i c a l s t a f f b y l a w s . . . . a n d e ) o p e r a t i o n s f o r s t e r i l i z a t i o n s i n b o t h m a l e s a n d f e m a l e s . ( I n s t i t u t e o f Law R e s e a r c h a n d Re f o r m : A l b e r t a , 1 9 8 9 , p.56 ) . H o w e v e r , t h e j u d g e m e n t o f t h e Supreme C o u r t i n t h e c a s e o f Eve h a s some u s e f u l f e a t u r e s t h a t may a f f e c t f u t u r e s t e r i l i z a t i o n s t a t u t e s ( I n s t i t u t e o f Law, R e s e a r c h a n d R e f o r m : A l b e r t a , 1 9 8 9 ) . F i r s t , i t e m p h a s i z e d t h e i r r e v e r s i b l e c h a r a c t e r i s t i c o f s t e r i l i z a t i o n . I n l i m i t i n g i t s j u r i s d i c t i o n i n t h e Eve j u d g e m e n t , t h e Supreme C o u r t o f C a nada h a s v i v i d l y u n d e r s c o r e d t h e s e r i o u s n e s s o f s t e r i l i z a t i o n as an i n t e r v e n t i o n ... The i r r e v e r s i b l e and s e r i o u s i n t r u s i o n on t h e b a s i c r i g h t s o f t h e i n d i v i d u a l i s s i m p l y t o o g r e a t t o a l l o w a c o u r t t o a c t on t h e b a s i s o f p o s s i b l e a d v a n t a g e s w h i c h f r o m t h e s t a n d p o i n t o f t h e i n d i v i d u a l , a r e h i g h l y -d e b a t a b l e . ( I n s t i t u t e o f Law R e s e a r c h a n d R e f o r m : , A l b e r t a , 1989,p.71 ) . S e c o n d , i t s u g g e s t s t h a t s u p e r i o r c o u r t s do n o t h a v e a u t h o r i t y t o a u t h o r i s e n o n - t h e r a p e u t i c s t e r i l i z a t i o n s . PARENTS WITH MENTAL HANDICAPS R e c e n t C o u r t C a s e s I n v o l v i n g A p p r e h e n s i o n As a r e s u l t o f t h e judgement i n t h e c a s e o f E v e , s e v e r a l q u e s t i o n s have been r a i s e d i n r e l a t i o n t o m e n t a l l y h a n d i c a p p e d p e o p l e ' s a b i l i t i e s t o r a i s e c h i l d r e n . Can t h e y be a d e q u a t e p a r e n t s ? Do t h e y h a v e a n y p a r e n t i n g s k i l l s ? What t y p e s o f s u p p o r t s e r v i c e s a r e a v a i l a b l e t o a s s i s t them w i t h p a r e n t i n g ? M i r a & Rody, 1980; F e l d m a n , 1 9 8 6 ) . C r i t e r i a t h a t have commonly b e e n u s e d i n c o u r t p r o c e e d i n g s a s b a s i s o f i n a d e q u a t e p a r e n t i n g c o n s i s t o f b e h a v i o u r s w h i c h , i f d e f i c i e n t , r e s u l t i n t h e f i n d i n g o f n e g l e c t f u l s t a t u s o f t h e c h i l d . S u c h a s t a t u s i s e s t a b l i s h e d when e v i d e n c e o f i ) p h y s i c a l a b u s e , i i i n a d e q u a t e h o u s e k e e p i n g , i i i ) f a i l u r e t o meet t h e c h i l d ' s n u t r i t i o n a l a n d m e d i c a l needs a n d i v ) f a i l u r e t o p r o v i d e a d e q u a t e a n d a p p r o p r i a t e s t i m u l a t i o n ( H e r t z , 1979) i s p r e s e n t . H owever, s o m e t i m e s w i t h o u t s u f f i c i e n t e v i d e n c e o f a b u s e , c h i l d r e n a r e a p p r e h e n d e d a n d p a r e n t a l r i g h t s a r e t e r m i n a t e d b e f o r e p a r e n t s w i t h m e n t a l h a n d i c a p s a r e a c t u a l l y a b l e t o p r o v e t h e m s e l v e s as c a p a b l e of c a r i n g f o r t h e i r c h i l d r e n . E x a m p l e s o f t h r e e s u c h c o u r t c a s e s a r e g i v e n b e l o w . 1 6 B e n j a m i n J a n s e n , b o r n i n 1986, was a p p r e h e n d e d i n J u l y 1988 f r o m t h e c a r e o f h i s m o t h e r , D i a n a J a n s e n . The i n i t i a l a p p r e h e n s i o n was i n s t i g a t e d on t h e g r o u n d s o f D i a n a ' s m e n t a l h a n d i c a p . I n A u g u s t 1988, t h e S u p e r i n t e n d e n t o f F a m i l y a n d C h i l d S e r v i c e s o f B r i t i s h C o l u m b i a , p e t i t i o n e d t o t h e c o u r t t h a t D i a n a be a w a r d e d c u s t o d y o f B e n j a m i n . Soon a f t e r , D i a n a was g i v e n c u s t o d y f o r s i x months w i t h s u p p o r t f r o m v a r i o u s c h i l d c a r e s e r v i c e s . However, t h e c u s t o d y was g i v e n on t h e c o n d i t i o n t h a t D i a n a c o o p e r a t e a n d s i g n v a r i o u s c o n t r a c t s . A f t e r s e v e r a l c o n t r a c t s , D i a n a r e f u s e d t o s i g n a g a i n as she f e l t t h a t t h e c o n t r a c t s were d e m e a n i n g . F o l l o w i n g t h i s r e f u s a l , B e n j a m i n was a p p r e h e n d e d a g a i n . D u r i n g t h e c o u r s e of t h e t r i a l , J u d g e B a r n e t t s t a t e d : . . . I am more t h a n s a t i s f i e d t h a t t h e o n l y r e a l r e a s o n f o r t h e t h i r d a p p r e h e n s i o n was t h e f a c t t h a t D i a n a w o u l d n o r s i g n t h e c o n t r a c t . And I am q u i t e u n a b l e t o u n d e r s t a n d why t h e s o c i a l w o r k e r s t h o u g h t i t n e c e s s a r y t o t a k e t h e d r a s t i c s t e p o f a p p r e h e n s i o n a g a i n . He c o u l d a n d s h o u l d have p r o c e d e d u n d e r t h e F a m i l y a n d C h i l d S e r v i c e s A c t . ( C o u r t o f A p p e a l P r o c e e d i n g s , A u g u s t 1 9 8 8 , p . 5 ) S e c t i o n 1 3 ( 6 ) o f t h e A c t e x p l i c i t l y s t a t e s t h a t : The s u p e r i n t e n d e n t o r a p a r e n t o f t h e c h i l d may s u b j e c t t o t h e g i v i n g o f n o t i c e s i n t h e same way as u n d e r S e c t i o n 1 2 ( 2 ) , a p p l y t o c o u r t f o r r e c i s s i o n o r v a r i a t i o n o f , a n o r d e r made u n d e r s u b s e c t i o n ( 1 ) o r ( 5 ) o f t h i s s e c t i o n , on t h e g r o u n d s t h a t t h e c i r c u m s t a n c e s h a v e s i g n i f i c a n t l y c h a n g e d . ( F a m i l y a n d C h i l d S e r v i c e s A c t , 1 9 8 0 , p . 2 1 ) . D u r i n g t h e c o u r s e o f t h e h e a r i n g , J u d g e B a r n e t t a l s o h e l d t h a t a l t h o u g h t h e a p p r e h e n s i o n i t s e l f was n o t i l l e g a l , i t 1 7 was n o t t h e r i g h t a p p r o a c h . I n a d d i t i o n , he a r g u e d t h a t t h e p r o p o s e d e v i d e n c e t h a t Ben was a b u s e d a n d t h a t h i s m o t h e r was u n a b l e t o c a r e f o r h i m c o u l d n o t be c o n f i r m e d o r e s t a b l i s h e d b y t h e e v i d e n c e p r e s e n t e d t o t h e c o u r t . I n h i s f i n a l j u d g e m e n t , t h e j u d g e a r t i c u l a t e d t h a t : 1. D i a n a i s m i l d l y m e n t a l l y h a n d i c a p p e d . She i s s l o w a n d s o m e t i m e s a c t s i m p u l s i v e l y a n d f o o l i s h l y . She i s n o t s t u p i d . She i s n o t i n c a p a b l e o f l e a r n i n g o r u n w i l l i n g t o l e a r n . 2. D i a n a a n d B e n j a m i n h a v e an a f f e c t i o n a t e a n d u s u a l l y a p r o p r i a t e r e l a t i o n s h i p . B e n j a m i n r e l i e s upon h i s m o t h e r . T h e r e i s a b s o l u t e l y n o t h i n g t o make one e v e n s u s p e c t t h a t D i a n a h a s e v e r a b u s e d B e n j a m i n . 3. D i a n a i s n o t a g o o d h o u s e k e e p e r . Her a p p a r t m e n t i s u s u a l l y i n a g r e a t mess. 4. D i a n a f e e d s B e n j a m i n a p p r o p r i a t e l y , d r e s s e s h i m p r o p e r l y , k e e p s h i m c l e a n a n d g e n e r a l l y c a r e s f o r h i m i n an a c c e p t a b l e manner. He d o e s n o t h a v e a n y u n s u a l h i s t o r y o f s i c k n e s s o r i n j u r i e s a n d t h e r e i s r e a l l y n o t h i n g t o c a u s e a r e a s o n a b l e p e r s o n t o be g r e a t l y c o n c e r n e d f o r B e n j a m i n ' s s a f e t y a n d w e l l b e i n g . T h e r e a r e some d e f i n i t e a r e a s where D i a n a ' s s k i l l s a n d j u d g e m e n t r e a l l y s h o u l d i m p r o v e . 5. B e n j a m i n i s a p p a r e n t l y d e l a y e d , b u t o n l y m i l d l y s o . ( C o u r t o f A p p e a l : Q u e s n e l , 1 9 8 8 . p , 5 ) . B a s e d on t h e s e s t a t e m e n t s , D i a n a was f i n a l l y a w a r d e d c u s t o d y . Thus i t seems e v i d e n t t h a t t h e t h r e e a p p r e h e n s i o n s may h a v e b e e n i n s t i g a t e d w i t h o u t s u f f i c i e n t e v i d e n c e o f p a r e n t a l i n c o m p e t e n c y . A n o t h e r c a s e i n B r i t i s h C o;umbia t h a t r e c e i v e d a t t e n t i o n w i t h i n t h e j u d i c i a l d o m a i n was t h e c a s e o f J o a n n e P a t t e r s e n ( C o u r t o f A p p e a l : V a n c o u v e r , B . C . , May 1 9 8 8 ) . The ape 11 a n t , who was t h e m o t h e r , h a d a m e n t a l h a n d i c a p t h e e x a c t n a t u r e o f w h i c h was n o t d e t e r m i n e d . T h r e e weeks p r i o r t o t h e b i r t h o f t h e c h i l d , a d e c i s i o n was made by t h e S u p e r i n t e n d e n t o f F a m i l y a n d C h i l d S e r v i c e s t o a p p r e h e n d t h e c h i l d a t b i r t h . One week f o l l o w i n g t h e b i r t h , on May 29, 1986, t h e c h i l d was a p p r e h e n d e d b y t h e S u p e r i n t e n d e n t and p l a c e d i n t o f o s t e r c a r e . F o l l o w i n g numerous h e a r i n g s , t h e m o t h e r was g i v e n some a c c e s s t o see t h e c h i l d . H o wever, i n November 1986, c u s t o d y o f t h e c h i l d was a w a r d e d t o f o s t e r c a r e o n t h e b a s i s t h a t t h e m o t h e r c o u l d n o t l o o k a f t e r t h e c h i l d h e r s e l f a n d as a r e s u l t , i t was n o t i n t h e c h i l d ' s b e s t i n t e r e s t t o be r a i s e d b y a number o f s u r r o g a t e m o t h e r s . F o l l o w i n g t h e r e - a p p r e h e n s i o n , t h e o r d e r was a p p e a l e d on May 27, 1 9 8 7 , when t h e l a w y e r f o r t h e m o t h e r r a i s e d a number o f i s s u e s r e l a t e d t o t h e C h a r t e r . She c l a i m e d t h a t t h e c o u r t h a d d i s c r i m i n a t e d a g a i n s t h e r on t h e b a s i s o f h e r m e n t a l h a n d i c a p , c o n t r a r y t o S e c t i o n 1 5 ( 1 ) o f t h e t h e C h a r t e r a n d S e c t i o n 1 3 ( 1 ) o f t h e B r i t i s h C o l u m b i a n Human R i g h t s Code. I n a d d i t i o n , c o u n s e l f o r t h e a p e l l a n t c l a i m e d t h a t t h e a c t i o n s o f t h e a g e n c y d e n i e d t o t h e m o t h e r t h e r i g h t t o e q u a l i t y u n d e r t h e l a w a n d t o e q u a l p r o t e c t i o n a n d e q u a l b e n e f i t o f t h e l a w w i t h o u t d i s c r i m i n a t i o n - a l l c o n t r a r y t o S e c t i o n 1 5 ( 1 ) o f t h e C h a r t e r . S u b s e q u e n t h e a r i n g s o f t h e c a s e l e d t o t h e r e l e a s e o f t h e c h i l d f r o m f o s t e r c a r e i n t o t h e c u s t o d y o f t h e m o t h e r . The j u d g e m e n t was b a s e d on t h e f a c t t h a t t h e s t r e n g t h o f t h e e v i d e n c e p r e s e n t e d i n c o u r t 19 was t o o weak t o e s t a b l i s h a n y f o r m o f c o n c l u s i o n s a b o u t t h e m o t h e r ' s i n a d e q u a c y t o r a i s e h e r s o n i n a s a t i s f a c t o r y manner. The t h i r d c a s e o c c u r e d i n t h e M a n i t o b a c o u r t s , on A u g u s t 19, 1989. T h i s c a s e i n v o l v e d M r s . B who g a v e b i r t h t o a h e a l t h y b a b y b o y on J u l y 2 0 , 1989. I m m e d i a t e l y f o l l o w i n g h i s b i r t h , t h e i n f a n t was a p p r e h e n d e d by a r e p r e s e n t a t i v e o f a W i n n i p e g c h i l d w e l f a r e a g e n c y on t h e b a s i s t h a t t h e c o u p l e was u n a b l e t o p r o v i d e f f e c t i v e p a r e n t i n g "due t o t h e i r i n h e r e n t l i m i t a t i o n s a n d t o t h e i r m e n t a l d i s a b i l i t y ( P e l t z , 1989, p . 4 ) . M r s . B , who was d e v e l o p m e n t a l l y d i s a b l e d , f u n c t i o n e d i n t h e b o r d e r l i n e r a n g e o f i n t e l i g e n c e w i t h v e r b a l s k i l l s i n t h e b o r d e r l i n e r a n g e a n d p e r f o r m a n c e i n t h e low a v e r a g e r a n g e . Mr. B, t h e f a t h e r o f t h e c h i l d , was a l s o d e v e 1 o p m e n t a l l y d i s a b l e d . H i s o v e r a l l i n t e l l e c t u a l l e v e l was i n t h e u p p e r r a n g e o f b o r d e r l i n e i n t e l l i g e n c e ( P e l t z , 1 9 8 9 ) . F o l l o w i n g t h e a p p r e h e n s i o n o f t h e c h i l d , a p e t i t i o n was f i l e d c l a i m i n g t h a t t h e s e p a r e n t s were b e i n g d i s c r i m i n a t e d a g a i n s t u n d e r S e c t i o n 1 5 ( 1 ) o f t h e C h a r t e r as w e l l as u n d e r S e c t i o n 1 3 ( 1 ) o f t h e Human R i g h t s Code. I n a d d i t i o n t h e y c l a i m e d t h a t t h e a c t i o n s o f t h e a g e n c y h a d d e n i e d t o them e q u a l i t y u n d e r t h e l a w a n d t h e e q u a l p r o t e c t i o n o f t h e l a w , t h u s b e i n g i n c o n s i s t e n t w i t h S e c t i o n 1 3 ( 1 ) a n d S e c t i o n 9 ( 1 ) o f t h e Code. A f t e r numerous h e a r i n g s , t h e b a b y was r e t u r n e d t o h i s p a r e n t s u n d e r a p l a n o f 24 h o u r s u p e r v i s i o n a n d a c c e s s t o a l i v e - i n homemaker. PURPOSE OF THE STUDY T o d a y , an i n c r e a s i n g number o f m e n t a l l y h a n d i c a p p e d a d u l t s a r e c h o o s i n g t o h a v e c h i l d r e n . The i s s u e i s f u r t h e r c o m p l i c a t e d when t h e i r r i g h t s t o r a i s e c h i l d r e n a r e t e r m i n a t e d b y t h e j u d i c i a l s y t e m s on t h e b a s i s o f t h e i r h a n d i c a p . V e r y o f t e n , s u c h r i g h t s a r e t e r m i n a t e d w i t h o u t p r o v i d i n g them t h e o p p o r t u n i t i e s t o p r o v e t h e m s e l v e s c a p a b l e o f c a r i n g f o r t h e i r c h i l d r e n a n d b e n e f i t i n g f r o m c ommunity r e s o u r c e p r o g r a m s . T h e r e a r e two l e g a l p r e s u m p t i o n s t h a t f o r m t h e b a s i s o f c h i l d a p p r e h e n s i o n s . F i r s t , m e n t a l l y h a n d i c a p p e d p e o p l e a r e b e l i e v e d t o be " u n f i t " p a r e n t s who l a c k t h e s k i l l s n e c e s s a r y t o r a i s e c h i l d r e n who, as a r e s u l t , may s u f f e r f r o m c o g n i t i v e , e m o t i o n a l a n d p h y s i c a l i m a p a i r m e n t s ( H a a v i k & M e n n i n g e r , 1986; S c h m i d t , 1 9 8 9 ) . S e c o n d l y , w h i l e p a r e n t s w i t h m e n t a l h a n d i c a p s may be r e c e i v i n g s u p p o r t f r o m community b a s e d r e s o u r c e s , s u c h s u p p o r t may n o t be a d e q u a t e t o meet t h e n e e d s o f t h e i r c h i l d r e n ( F e l d m a n , 1 9 8 6 ) . To c h a l l e n g e t h e s e p r e s u m p t i o n s , t h e r e ' s a n e e d t o : a ) I d e n t i f y p r o b l e m s common t o m e n t a l l y h a n d i c a p p e d p a r e n t s as p e r c e i v e d by t h e p a r e n t s t h e m s e l v e s , a n d b ) D e t e r m i n e who i s s u p p o r t i n g p a r e n t s i n t h e i r c a r e g i v i n g r o l e s a n d what i s t h e i r p e r c e i v e d q u a l i t y o f t h e s e s u p p o r t s y s t e m s . The p u r p o s e o f t h e s t u d y i s t o i n v e s t i g a t e b o t h t h e u n d e r s t a n d i n g a n d t h e p e r c e p t i o n s o f p a r e n t i n g s k i l l s a s p e r c e i v e d b y m e n t a l l y h a n d i c a p p p e d p a r e n t s as w e l l as t h e i r p e r c e p t i o n s o f t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f f o r m a l s u p p o r t s y s t e m s . D e f i n i t i o n o f Terms I n t h i s s t u d y , p a r e n t i n g s k i l l s w i l l be o r g a n i z e d u n d e r f o u r c a t e g o r i e s : n u t r i t i o n a l a n d m e a l p l a n n i n g s k i l l s , d i s c i p l i n e a n d b e h a v i o u r management, home s a f e t y a n d e m e r g e n c y s k i l l s a n d , f i n a l l y , i n t e r a c t i o n a n d s o c i a l s t i m u l a t i o n . These c a t e g o r i e s were d e r i v e d f r o m r e s e a r c h s t u d i e s b y R u t t e r (1983 ) a n d H e r t z (1979 ). P a r e n t a l c o m p e t e n c y / A d e q u a t e p a r e n t i n g - r e f e r s t o a p a r e n t ' s a b i l i t y t o r e s p o n d a n d c a t e r t o t h e i r c h i l d ' s e m o t i o n a l , c o g n i t i v e a n d p h y s i c a l n e e d s . P a r e n t i n g S k i l l s ( R u t t e r , 1 9 8 3 ; H e r t z , 1 9 7 9 ) N u t r i t i o n a l a n d M e a l P l a n n i n g S k i l l s * r e c o g n i z e s a n d u n d e r s t a n d s t h e f o u r f o o d g r o u p s a n d i s a b l e t o r e l a t e them t o t h e i r c h i l d ' s d i e t . * h a s t h e a b i l i t y t o p l a n a n d make b a l a n c e d m e a l s f o r t h e f a m i l y . *has t h e a b i l i t y t o d i s t i n g u i s h b e t w e e n n u t r i t i o u s a n y non- n u t r i t i o u s f o o d s . D i s c i p l i n e a n d B e h a v i o u r Managemnt S k i l l s * h a s t h e a w a r e n e s s o f t h e i m p o r t a n c e o f d i s c i p l i n i n g c h i l d r e n . * h a s t h e a b i l i t y t o d e v e l o p a n d a p p l y a p p r o p r i a t e s t r a t e g i e s . Home S a f e t y a n d E m e r g e n c y S k i l l s * a w a r e n e s s o f p o s i o n o u s and d a n g e r o u s i t e m s i n t h e h o u s e . * a b i l i t y t o p r e v e n t a n d r e s p o n d t o e m e r g e n c y s i t u a t i o n s . * a b i l i t y t o t a k e p r e c a u t i o n s t o p r e v e n t a c c i d e n t s i n t h e home. I n t e r a c t i o n a n d S o c i a l S t i m u l a t i o n * a b i l i t y t o c o m m u n i c a t e l o v e a n d a f f e c t i o n t o t h e i r c h i l d r e n . * t h e d e g r e e t o w h i c h c h i l d r e n a r e e n c o u r a g e d t o s o c i a l i z e w i t h t h e i r p e e r s . C h a p t e r two w i l l r e v i e w r e s e a r c h w h i c h f o c u s e s on what c o n s t i t u t e s a d e q u a t e p a r e n t i n g , f a c t o r s w h i c h a f f e c t p a r e n t a l c o m p e t e n c i e s a n d t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f t h e c o m m u n i t y s u p p o r t s e r v i c e s t o m e n t a l l y h a n d i c a p p e d p a r e n t s . CHAPTER I I . REVIEW OF LITERATURE The c a s e l a w and l e g i s l a t i o n a u t h o r i s i n g a p p r e h e n s i o n and t e r m i n a t i o n s a r e b a s e d on t h e a s s u m p t i o n s t h a t m e n t a l l y -h a n d i c a p p e d p a r e n t s a r e i n c a p a b l e o f p r o v i d i n g a d e q u a t e c a r e f o r t h e i r c h i l d r e n a nd as a r e s u l t , t h e y l i k e l y t o s u f f e r f r o m c o g n i t i v e , p s y c h o l o g i c a l and e m o t i o n a l d e l a y s ( S c h m i d t , 1989; K a t z m a n , 1 9 8 1 ; Budd & G r e e n s p a n , 1 9 8 4 ) . T h i s c h a p t e r w i l l r e v i e w t h e r e s e a r c h r e l a t i n g t o t h e s e a s s u m p t i o n s . S p e c i f i c a l l y , i t w i l l f o c u s on two q u e s t i o n s : a ) W h i c h f a c t o r s a f f e c t t h e p a r e n t a l c o m p e t e n c y o f m e n t a l l y r e t a r d e d p a r e n t s and how do t h e s e i n t u r n a f f e c t t h e p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s ? b ) What t y p e s o f s u p p o r t s e r v i c e s a r e a v a i l a b l e t o m e n t a l l y h a n d i c a p p e d p a r e n t s a n d what a r e t h e i r p e r c e p t i o n s o f t h e q u a l i t y a n d t h e a v a i l a b i l i t y o f t h e s e s e r v i c e s ? W i t h i n t h e l e g a l j u r i s d i c t i o n s , p a r e n t a l c o m p e t e n c y o r a d e q u a c y i s v e r y o f t e n d e t e r m i n e d b y t h e p r e s e n c e o f b e h a v i o u r s w h i c h , i f d e f i c i e n t , r e s u l t i n t h e f i n d i n g o f n e g l e c t f u l s t a t u s o f t h e c h i l d . S u c h a s t a t u s i s v e r y o f t e n e s t a b l i s h e d where p a r e n t a l b e h a v i o u r s s u c h as i ) p h y s i c a l a b u s e , i i ) i n a d e q u a t e h o u s e k e e p i n g , i i i ) f a i l u r e t o meet t h e c h i l d ' s p h y s i c a l needs i v ) e m o t i o n a l n e g l e c t v ) i n a d e q u a t e p a r e n t i n g ( i . e . f a i l u r e t o a t t e n d t o t h e c h i l d ' s n u t r i t i o n a l n e e d s , home s a f e t y a n d e m e r g e n c y n e e d s ) a n d v i ) f a i l u r e t o p r o v i d e m e d i c a l c a r e ( H e r t z , 1 9 7 9 ; M i r a & Roddy 1 9 8 0 ) p r e s e n t when r a i s i n g f a m i l i e s . The r e v i e w i s d i v i d e d i n t o two s e c t i o n s . The f i r s t w i l l d i s c u s s s t u d i e s w h i c h e x a m i n e f a c t o r s t h a t d i r e c t l y a f f e c t t h e p a r e n t i n g s k i l l s o f t h e m e n t a l l y r e t a r d e d . The s e c o n d p a r t w i l l d i s c u s s t h e r o l e o f s u p p o r t s e r v i c e s i n e n c o u r a g i n g t h e p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s a n d how t h e y p e r c e i v e t h e s e s e r v i c e s . THE CONCEPT OF PARENTING The c o n c e p t o f p a r e n t i n g i s r o o t e d i n t h e f u l f i l l m e n t o f a c h i l d ' s e m o t i o n a l , c o g n i t i v e a n d p h y i s c a l n e e d s as w e l l as t h e p r o v i s i o n o f s u p p o r t i v e a c t i v i t i e s t h u s g i v i n g s u s t e n a n c e a n d a i d t o c h i l d r e n b o t h on a day t o d a y b a s i s a n d i n t i m e o f c r i s i s . A c c o r d i n g t o D e ' A t h ( 1 9 8 3 ) , p a r e n t i n g i n v o l v e s s k i l l s a n d p r a c t i c e s w h i c h e n a b l e p e o p l e i n t h e i r r o l e as p a r e n t s as t h e y n e g o t i a t e t h e s t a g e s and t r a n s i t i o n s o f f a m i l y l i f e ( D e ' A t h , 1 9 8 3 ) . To t a k e t h i s c o n c e p t e v e n f u r t h e r , R u t t e r ( 1 9 8 3 ) p o s t u l a t e d t h a t p a r e n t i n g i s r a t h e r a f u n c t i o n o f h a v i n g s u c h s o c i a l s k i l l s a n d b a s i c s k i l l s a s : a ) The a b i l i t y t o r e s p o n d a n d c a t e r t o t h e c h i l d ' s b a s i c n e e d s , b ) The a b i l i t y t o l o v e and u n d e r t a k e r e l a t i o n s h i p s , c ) The a b i l i t y t o c a r e , s u p p o r t a n d n u r t u r e o t h e r p e o p l e , a n d d ) The a b i l i t y t o c o m m u n i c a t e , t h r o u g h a c t i v e l i s t e n i n g , g i v i n g a p p r o p r i a t e v e r b a l a n d non-v e r b a l messages . ( R u t t e r , 1983 , p.80 ) . The a c q u s i t i o n o f s u c h s k i l l s i s g e n e r a l l y d e p e n d e n t on how an i n d i v i d u a l i s e x p o s e d t o n a t u r a l a n d i n c i d e n t a l l e a r n i n g e x p e r i e n c e s ( S c h m i d t , 1989; R u t t e r , 1 9 8 3 ) . I n a d d i t i o n , p a r e n t i n g i s a l s o a f u n c t i o n o f o t h e r v a r i a b l e s s u c h as t h e p a r e n t s ' p s y c h o l o g i c a l a n d e m o t i o n a l s t a t e , t h e t i m e a v a i l a b l e f o r p a r e n t i n g , t h e e x t e n t t o w h i c h c h i l d r e a r i n g i s s h a r e d b e t w e e n t h e p a r e n t s a n d most i m p o r t a n t o f a l l , t h e a v a i l a b i l i t y o f a d e q u a t e s o c i a l s u p p o r t s e r v i c e s ( R u t t e r , 1983; Budd & G r e e n s p a n , 1 9 8 4 ) . H o wever, m e n t a l l y h a n d i c a p p e d p a r e n t s may v e r y o f t e n h a v e d i f f i c u l t y i n a c q u i r i n g a n d a p p l y i n g s u c h s k i l l s . F r e q u e n t l y , as i n s t i t u t i o n a l i z e d p e r s o n s , a p p r o p r i a t e p a r e n t i n g r o l e m o d e l s were n o t a v a i l a b l e t o them a n d , as a r e s u l t , t h e y were n o t e x p o s e d t o n a t u r a l a n d l e a r n i n g e x p e r i e n c e s . Who i s a C o m p e t e n t P a r e n t ? The c h a l l e n g e s a n d r e s p o n s i b i l i t i e s o f p a r e n t i n g a r e p r o b a b l y t h e most d i f f i c u l t a s p e c t s o f a d u l t h o o d . I n a n y one s o c i e t y , no one i s e v e r q u i t e r e a d y t o t a k e on t h e l i f e t i m e r e s p o n s i b i l i t i e s t h a t accompany t h e r o l e o f p a r e n t i n g , a n d c e r t a i n l y . p e r s o n s w i t h m e n t a l h a n d i c a p s a r e by no means an e x c e p t i o n ( G a l l a g h e r , Beckman & C r o s s , 1983 ) . A l t h o u g h e d u c a t o r s a n d o t h e r p a r a p r o f e s s i o n a l s i n t e r e s t e d i n c h i l d r e n h a v e o b s e r v e d t h a t one must be l i c e n s e d t o be a p l u m b e r o r a t e a c h e r , l i c e n s i n g f o r p a r e n t h o o d o b v i o u s l y i s q u i t e a b s u r d . Who i s a b l e t o j u d g e t h e c r i t e r i a t h a t d e f i n e a n a d e q u a t e p a r e n t ? P o l s t e r & D a n g e l ( 1 9 8 4 ) f o u n d t h a t p r a c t i c e s w h i c h d e t e r m i n e d t h e l e v e l o f p a r e n t a l a d e q u a c y v a r i e d c o n s i d e r a b l y o v e r t i m e , and a c r o s s c u l t u r e s . A d e q u a t e p a r e n t i n g h a s b e e n b r o a d l y d e f i n e d b y some r e s e a r c h e r s as t h e p r o v i s i o n o f " l i f e n e c e s s i t i e s , s a f e e n v i r o n m e n t , h e a l t h c a r e a n d e d u c a t i o n " ( R u t t e r , 1983; P o l s t e r & D a n g e l , 1984; A b i d i n , 1 9 8 2 ) . A l t h o u g h d e f i n i t i o n s s u c h a s t h e s e may be o f some u s e , t h e b r o a d c o n t e x t i n w h i c h t h e y a r e a p p l i e d i n may l e a d one t o i n f e r a w i d e r a n g e o f i n t e r p r e t a t i o n s . I n d e f i n i n g p a r e n t a l c o m p e t e n c i e s , M i r a & Rody ( 1 9 8 0 ) s t a t e d t h a t p a r e n t a l p r a c t i c e s a r e t h o s e w h i c h , i f d e f i c i e n t , r e s u l t i n a f i n d i n g o f n e g l e c t f u l s t a t u s o f t h e c h i l d . T h i s i n v o l v e d t h e f o l l o w i n g c a t e g o r i e s o f n e g l e c t : a ) p h y s i c a l a b u s e , b ) i n a d e q u a t e s u p e r v i s i o n o r h o u s e k e e p i n g , c ) i n a d e q a t e p a r e n t i n g , d ) s e x u a l a b u s e a n d e ) f a i l u r e t o p r o v i d e m e d i c a l c a r e . D e f i c i t s i n a d e q u a t e c a r e were b a s e d on s u c h f i n d i n g s as m i n i m a l p a r e n t a l a t t e n t i o n , l a c k o f s t i m u l a t i o n a n d h a p h a z a r d s c h e d u l i n g o f c h i l d c a r e ( W a l d , 1 9 7 5 ) . A c c o r d i n g t o H e r t z ( 1 9 7 9 ) , t h e l e g a l s y s t e m i n t h e U.S. h a s c o n s i s t e n t l y f o c u s e d on t h r e e s k i l l s i n n e g l e c t c a s e s a s e s s e n t i a l f o r a d e q u a t e p a r e n t i n g . S u c h s k i l l s i n v o l v e l o v e a n d a f f e c t i o n , h o u s e k e e p i n g s k i l l s a n d f u l f i l l i n g t h e c h i l d ' s p h y s i c a l n e e d s . However, i n c a s e s w here m e n t a l l y h a n d i c a p p e d p a r e n t s a r e i n v o l v e d , many s t a t e s h a v e i n c l u d e d a f o u r t h f a c t o r , t h a t i s h a v i n g t h e a b i l i t y t o s t i m u l a t e t h e c h i l d i n t e l l e c t u a l l y . FACTORS AFFECTING PARENTAL COMPETENCE C o n c e r n w i t h t h e a b i l i t y o f p e r s o n s w i t h m e n t a l h a n d i c a p s t o p r o v i d e a d e q u a t e c a r e h a s b e e n t h e c e n t r a l i s s u e a d d r e s s e d b y l e g a l j u r i s d i c t i o n s . The m a j o r i t y o f r e s e a r c h s t u d i e s have c o m p a r e d m e n t a l l y h a n d i c a p p e d p a r e n t s w i t h p a r e n t s o f n o r m a l i n t e l l e c t ( B u d d & G r e e n s p a n , 1 9 8 6 ; F e l d m a n , 1 9 8 6 ) . U n d o u b t e d l y , r e s u l t s f r o m s u c h s t u d i e s h a v e i n d i c a t e d t h a t , a s a g r o u p , m e n t a l l y h a n d i c a p p e d p a r e n t s h a v e more d i f f i c u l t i e s c o p i n g w i t h r a i s i n g f a m i l i e s t h a n n o n - h a n d i c a p p e d p a r e n t s ( B u d d & G r e e n s p a n , 1 9 8 6 ; S c h m i d t , 1 9 8 8 ) . However, o t h e r s t u d i e s i n d i c a t e t h a t m e n t a l l y h a n d i c a p p e d p a r e n t s cope as w e l l a s t h o s e p a r e n t s who come f r o m s i m i l a r s o c i o - e c o n o m i c b a c k g r o u n d s ( F o t h e r i n g h a m , 1 9 8 0 ; M i r a & R o d d y , 1 9 8 0 ) . I f t h e m e n t a l l y r e t a r d e d p a r e n t s f i n d i t d i f f i c u l t t o cope w i t h p a r e n t i n g , t h e q u e s t i o n t h a t i s commomly p o s e d i s w h e t h e r t h e i r d i f f i c u l t i e s a r e r e l a t e d t o t h e i r i n t e l l e c t u a l a b i l i t i e s o r t o o t h e r f a c t o r s s u c h as t h e l e v e l o f i n t e l l i g e n c e , t h e d e g r e e t o w h i c h t h e y a r e s o c i a l l y a n d e m o t i o n a l l y a d j u s t e d a n d t h e d e g r e e t o w h i c h t h e y h a v e a c c e s s t o s u p p o r t s e r v i c e s ( M i r a & Roddy,1980; F e l d m a n , 1 9 8 6 ). I n t e l 1 i g e n c e To d a t e , p r o b a b l y t h e most e x t e n s i v e s t u d y e x a m i n i n g i n t e l l i g e n c e as a p o s s i b l e f a c t o r a f f e c t i n g p a r e n t i n g , was one i n w h i c h 90 f a m i l i e s ( a v e r a g e IQ=58.6) were d i v i d e d i n t o t h r e e g r o u p s b a s e d upon t h e a d e q u a c y o f c h i l d c a r e a l o n g t h r e e l e v e l s : S a t i s f a c t o r y , Q u e s t i o n a b l e a n d U n s a t i s f a c t o r y ( M i eke 1 son,1949 ) . R e s u l t s o f t h e s t u d y i n d i c a t e d t h a t 4 2 % o f t h e f a m i l i e s were r a t e d as h a v i n g g i v e n t h e i r c h i l d r e n s a t i s f a c t o r y c a r e , 3 2 % as q u e s t i o n a b l e c a r e a n d 23% as u n s a t i s f a c t o r y c a r e . M i c k e l s o n f o u n d t h a t low IQ was n o t n e c e s s a r i l y p r e d i c t i v e o f i n a d e q u a t e p a r e n t i n g . M i c k e l s o n c o n s i d e r e d f a c t o r s s u c h a s number o f p r e g n a n c i e s , number o f c h i l d r e n l i v i n g i n t h e home, age d i s t r i b u t i o n o f t h e c h i l d r e n , t h e m o t h e r s ' IQ d i f f e r e n c e i n t h e a g e s b e t w e e n t h e h u s b a n d a n d t h e w i f e , m a r i t a l a d j u s t m e n t a n d t h e l e v e l o f i n c o m e . R e s u l t s i n d i c a t e d t h a t a d e q u a t e p a r e n t i n g was r e l a t e d more t o m a r i t a l a d j u s t m e n t , l e v e l o f i n c o m e , a n d t h e number o f c h i l d r e n i n t h e home r a t h e r t h a n t o t h e IQ ( M i c k e l s o n , 1947; F e l d m a n , 1986; Reed & Reed, 1 9 6 5 ) . A n o t h e r s t u d y r e p o r t i n g s i m i l a r f i n d i n g s i n v e s t i g a t e d t h e d e g r e e o f m a r i t a l a d j u s t m e n t o f e i g h t y c o u p l e s . F l o o r , R o s e n , a n d Z i e s f e n ( 1 9 7 5 ) f o u n d t h a t p e r s o n s w i t h m e n t a l h a n d i c a p s f a c e d p r o b l e m s w h i c h were s i m i l a r t o t h o s e o f non-h a n d i c a p p e d p a r e n t s . T hese i n c l u d e d money management, a n d c h i l d d i s c i p l i n e p r o b l e m s . I n a d d i t i o n , t h e i r f i n d i n g s i n d i c a t e d t h a t o u t o f 32 c h i l d r e n , 5 2 % o f t h e c h i l d r e n w e r e r e c e i v i n g a d e q u a t e m e d i c a l a t t e n t i o n , a f f e c t i o n a n d a p p r o p r i a t e s t i m u l a t i o n f r o m b o t h p a r e n t s ( F l o o r e t a l . ,1975 ) . O t h e r a u t h o r s h a v e s u g g e s t e d t h a t f a c t o r s s u c h a s p a r e n t s ' a g e , l e v e l o f e d u c a t i o n , s u p p o r t f r o m e x t e n d e d f a m i l i e s a n d t h e d e g r e e o f h a n d i c a p , a l s o a f f e c t t h e c o p i n g s k i l l s o f m e n t a l l y h a n d i c a p p e d p a r e n t s ( C r a f t & C r a f t , 1979; M i r a & Roddy, 1980; Tymchuk, A n d r o n & Unger 1 9 8 7 ) . I n a d d i t i o n , S c h m i d t ( 1 9 8 9 ) h a s a l s o a d d e d f a c t o r s s u c h as t h e h i s t o r y o f i n s t i t u t i o n a l i s a t i o n o f p a r e n t s a n d t h e d e g r e e t o w h i c h t h e y were h a n d i c a p p e d . S o c i a l / E m o t i o n a l Adjustment S e v e r a l s t u d i e s h a v e i n d i c a t e d t h a t t h e d e g r e e t o w h i c h a m e n t a l l y r e t a r d e d p a r e n t i s s o c i a l l y a n d e m o t i o n a l l y a d j u s t e d p l a y s a k e y r o l e i n d e t e r m i n i n g t h e p r o b l e m s t h a t a r e e n c o u n t e r e d b y m e n t a l l y h a n d i c a p p e d p a r e n t s ( M i c k e l s o n , 1947; G r a n t , 1980; F l o o r e t a l . , 1 9 7 5 ; Budd & G r e e n s p a n , 1986 ) . I n h e r s t u d y , M i c k e l s o n ( 1 9 4 7 ) f o u n d t h a t 8 1 % o f t h e p a r e n t s who were p r o v i d i n g q u e s t i o n a b l e o r u n s a t i s f a c t o r y c a r e showed e v i d e n c e o f p r o b l e m s r e l a t e d t o t h e i r s o c i a l a n d e m o t i o n a l w e l l b e i n g . S u c h p r o b l e m s i n c l u d e d e x c e s s i v e d r i n k i n g , m a r i t a l d i s h a r m o n y , a n d p e r s o n a l i t y d i s t u r b a n c e s . Budd & G r e e n s p a n ' s ( 1 9 8 5 ) e v a l u a t i o n o f t r a i n i n g p r o g r a m s i n d i c a t e d t h a t o u t o f t h e t o t a l 52 f a m i l i e s , a p p r o x i m a t e l y 2 5 % o f t h e p a r e n t s were e x p e r i e n c i n g some s o r t o f m a r i t a l e m o t i o n a l p r o b l e m s t h a t were a f f e c t i n g t h e i r a b i l i t i e s i n p r o v i d i n g a c c e p t a b l e s t a n d a r d s o f c h i l d c a r e . G e i j e r a n d K a r l s s o n ( 1 9 8 7 ) showed t h a t o u t o f t h e 15 m e n t a l l y h a n d i c a p p e d m o t h e r s , 5 0 % o f them h a d h a d u n s t a b l e u p - b r i n g i n g s , w here i n c i d e n c e s o f m e n t a l i l l n e s s e s , a l c o h o l i s m a n d a b u s e were p r e d o m i n a n t . The f i n d i n g s f r o m t h e ab o v e s t u d i e s i n d i c a t e t h a t c o g n i t i v e a n d i n t e l l e c t u a l l i m i t a t i o n s a r e n o t t h e s o l e f a c t o r s r e s p o n s i b l e f o r p a r e n t i n g i n a d e q u a c i e s i n m e n t a l l y h a n d i c a p p e d p a r e n t s . But r a t h e r , i t i s t h e p r e v a l e n c e o f s o c i a l a n d e m o t i o n a l p r o b l e m s t h a t , t o some e x t e n t , p l a y a b i g g e r r o l e i n d e t e r m i n i n g t h e a b i l i t y o f m e n t a l l y h a n d i c a p p e d p a r e n t s t o p r o v i d e a d e q u a t e c a r e f o r t h e i r c h i l d r e n ( G i l l b e r g & G e i j e r - K a r i s s o n s , 1987; M i c k e l s o n , 1947; Budd & G r e e n s p a n , 1 9 8 6 ) . THE A V A I L A B I L I T Y OF SUPPORT SERVICES The a b i l i t y o f m e n t a l l y h a n d i c a p p e d p a r e n t s , l i k e non-m e n t a l l y h a n d i c a p p e d p a r e n t s , t o a d e q u a t e l y c a r e f o r t h e i r c h i l d r e n i s a f f e c t e d b y t h e e x i s t e n c e a n d t h e a v a i l a b i l i t y o f s u p p o r t n e t w o r k s w i t h i n t h e commun i t y . The r e s e a r c h i n d i c a t e s t h a t m e n t a l l y h a n d i c a p p e d p a r e n t s b e n e f i t c o n s i d e r a b l y f r o m v a r i o u s t y p e s o f m o d i f i e d s u p p o r t s e r v i c e s ( B u d d & G r e e n s p a n , 1 9 8 6 ; S c h m i d t , 1 9 8 9 ) . T h i s s t u d y w i l l d i s t i n g u i s h b e t w e e n f o r m a l a n d f a m i l y s u p p o r t n e t w o r k s t h a t a r e a v a i l a b l e t o t h e m e n t a l l y h a n d i c a p p e d p a r e n t s . FORMAL SUPPORT SYSTEM The Need f o r P r o f e s s s i o n a l H e l p Brown ( 1 9 7 8 ) a d d r e s s e d t h e q u e s t i o n , " W h a t g r o u p s e e k s p r o f e s s i o n a l h e l p ? " The d a t a s u g g e s t e d t h a t h e l p s e e k e r s e x p e r i e n c e d more t r o u b l e s o m e e v e n t s t h a n i n d i v i d u a l s who d i d n ' t s e e k h e l p . The m a g n i t u d e o f s t r e s s f u l e p i s o d e s i n t h e l i v e s o f t h i s g r o u p was g r e a t e r t h a n i n t h e o t h e r g r u o p s s t u d i e d . The a u t h o r s u g g e s t e d t h a t p r o f e s s i o n a l s w e r e c o n t a c t e d i n s i t u a t i o n s where s t r e s s f u l e v e n t s a n d h i g h e r l e v e l s o f r o l e s t r a i n were e x h i b i t e d . F o r t h i s g r o u p , t h e r e l i a n c e on f o r m a l s u p p o r t s y s t e m s seemed t o r e f l e c t t h e i n a d e q u a c i e s o f i n f o r m a l s u p p o r t s , a n d a r e l u c t a n c e t o k e e p a s k i n g i n f o r m a l a s s o c i a t e s f o r a s s i s t a n c e . V e r y o f t e n , c o n t a c t w i t h an o r g a n i z a t i o n m a r k e d a t u r n i n g p o i n t i n t h e u n d e r s t a n d i n g a n d c o p i n g w i t h t h e r e s p o n s i b i l i t i e s t h a t a r e e n t a i l e d i n p a r e n t h o o d . F o r m a l S u p p o r t a n d P a r e n t i n g S k i l l s Many m e n t a l l y h a n d i c a p p e d p a r e n t s f u n c t i o n i n a manner s i m i l a r t o o t h e r p a r e n t s who h a v e s i m i l a r d e m o g r a p h i c c h a r a c t e r i s t i c s ( M i c k e l s o n , 1947; Budd & G r e e n s p a n , 1 9 8 5 ) . S i m i l a r l y , i t h a s a l s o b e e n f o u n d t h a t a s i g n i f i c a n t p e r c e n t a g e o f m e n t a l l y h a n d i c a p p e d p a r e n t s a r e c a p a b l e o f b e n e f i t t i n g f r o m i n t e r v e n t i o n a l p r o g r a m s d e s i g n e d t o i m p r o v e t h e i r p a r e n t i n g s k i l l s ( M i eke 1 s o n , 1 9 4 9 ; Budd & G r e e n s p a n , 1 9 8 5 ) . I n a d d i t i o n , Budd & G r e e n s p a n ( 1985 ) s t a t e d t h a t i n t e r v e n t i o n a l methods t h a t a r e d e s i g n e d f o r non-m e n t a l l y h a n d i c a p p e d p a r e n t s c a n be u s e d s u c c e s s f u l l y w i t h m e n t a l l y h a n d i c a p p e d p a r e n t s , a l t h o u g h t h e y may n e e d t o be m o d i f i e d . I n an e x t e n s i v e r e v i e w o f t r a i n i n g p r o g r a m s , Budd and G r e e n s p a n ( 1 9 8 4 ) i n d i c a t e d t h a t p a r e n t t r a i n i n g pograms f o r c l i e n t s who a r e m e n t a l l y h a n d i c a p p e d were more " e l a b o r a t e , more d i r e c t i v e a n d l o n g e r t h a n t y p i c a l p r o g r a m s f o r n o n - h a n d i c a p p e d p a r e n t s " ( p . 7 ) . S u c h p r o g r a m s i n v o l v e d t r a i n i n g p a r e n t s i n c a r e t a k i n g s k i l l s s u c h as d i a p e r i n g , f e e d i n g , b a t h i n g s a f e t y , n u t r i t i o n , p r o v i d i n g s t i m u l a t i n g home e n v i r o n m e n t s a n d p o s i t i v e m o t h e r - c h i l d i n t e r a c t i o n s ( F e l d m a n , 1 9 8 6 ) . F e l d m a n ( 1 9 8 6 ) s t u d i e d t h e d e g r e e t o w h i c h m e n t a l l y h a n d i c a p p e d m o t h e r s p r o v i d e d a s t i m u l a t i n g i n t e r a c t i o n f o r t h e i r c h i l d r e n . T h e r e were f o u r b o y s a n d t h r e e g i r l s , ( a v e r a g e age 13.7 m o n t h s ) a n d e x c e p t f o r one c h i l d , none o f them showed s i g n s o f d e v e l o p m e n t a l d e l a y . The b e h a v i o u r s o f i n t e r e s t i n t h i s s t u d y were " p r a i s i n g " , " t a l k i n g " , " p r o m p t i n g p l a y b e h a v i o u r " and e n c o u r a g i n g " c h i l d v o c a l i s a t i o n s " . These m o t h e r s were o b s e r v e d i n t h e i r own homes. A f t e r o b t a i n i n g a b a s e l i n e , t h e t r a i n i n g s e s s i o n s were i m p l e m e n t e d . T h e s e s e s s i o n s f o c u s e d on i n t e r a c t i v e t a r g e t b e h a v i o u r s , s p e c i f i c a l l y f o l l o w e d by d i s c u s s i o n s o f m o t h e r - c h i l d i n t e r a c t i o n s a n d m o d e l l i n g s e g m e n t s . The t r a i n e r s were e n c o u r a g e d t o p r o v i d e p o s i t i v e f e e d b a c k a n d r e i n f o r c e m e n t . When h o w e v e r , m o t h e r s p e r f o r m e d i n a p p r o p r i a t e l y , t h e t h e r a p i s t s m o d e l l e d t h e a p p r o p r i a t e t a r g e t b e h a v i o u r a nd t h e m o t h e r s were r e q u e s t e d t o t r y a g a i n . The m o t h e r s were g i v e n a "home p l a y c h a r t " on w h i c h t h e y were t o r e c o r d a p p r o p r i a t e i n t e r a c t i v e b e h a v i o u r s . R e s u l t s i n d i c a t e d t h a t m o t h e r s d i d b e n e f i t f r o m t r a i n i n g s e s s i o n s a n d i n c r e a s e d t h e i r b e h a v i o u r s t o t h e l e v e l s o b s e r v e d i n n o n - h a n d i c a p p e d p a r e n t s ( F e l d m a n , 1 9 8 6 ) . A f o l l o w up a t t e n months i n d i c a t e d a mean i n c r e a s e o f i n t e r a c t i v e b e h a v i o u r s f r o m e i g h t p e r c e n t t o 33 p e r c e n t i n m a i n t e n a n c e . I n an e a r l i e r s t u d y , E y b e r g ( 1 9 8 1 ) u s e d s i m i l a r p r o c e d u r e s t o i n c r e a s e t h e f r e q u e n c y o f m o t h e r - c h i l d i n t e r a c t i o n s . Ten p a r e n t s r e c e i v e d s i m i l a r t r a i n i n g i n a g r o u p home. The s e s s i o n s c o n s i s t e d o f two p a r t s : c h i l d -d i r e c t e d a c t i v i t i e s a n d p a r e n t - d i r e c t e d a c t i v i t i e s . I n t h e f o r m e r , p a r e n t s were e n c o u r a g e d t o p o s i t i v e l y r e i n f o r c e t h e i r c h i l d r e n ' s b e h a v i o u r s w h i l e a t t h e same t i m e , r e f r a i n f r o m q u e s t i o n i n g o r commanding t h e i r c h i l d r e n . I n t h e l a t t e r , p a r e n t s were t r a i n e d t o p r a i s e a p p r o p r i a t e b e h a v i o u r s , i m i t a t e c h i l d v o c a l i s a t i o n s a n d p r o v i d e r i c h p l a y e n v i r o n m e n t s . E y b e r g ( 1 9 8 1 ) f o u n d t h a t t r a i n i n g p r o g r a m s were more s u c c e s s f u l when t h e number o f t r a i n i n g s e s s i o n s was i n c r e a s e d f r o m n i n e t o 20. I n a d d i t i o n , E y b e r g a r g u e d t h a t t h e s e p a r e n t s were a b l e t o m a s t e r t h e s k i l l s b e c a u s e " . . o f i n t e n s i v e i n v i v o e x p e r i e n c e s p r o v i d e d a nd t h e r e l a t i v e l y s i m p l e r u l e s t h a t were i n v o l v e d i n t h e p a r e n t s ' a p p l i c a t i o n o f t h e t r e a t m e n t p r o g r a m " ( B u d d & G r e e n s p a n , 1982 ) . THE QUALITY OF PROFFESSIONAL SERVICES E v a l u a t i o n o f P a r e n t - T r a i n i n g W o r k s h o p s P r o g r a m e v a l u a t o r s a r e c o n c e r n e d a b o u t t h e i n c l u s i o n o f c l i e n t s a t i s f a c t i o n i n t h e i r a s s e s s m e n t s (Sommers & N c y z , 1979; R o s e n b e r g & T a t e 1 9 8 2 ) . A c c o r d i n g t o H i l l ( 1 9 6 9 ) a n d R o s e n b e r g a n d T a t e ( 1 9 8 2 ) , t h e m a j o r i t y o f p e o p l e who s e e k h e l p f r o m p r o f e s s i o n a l o u t l e t s a r e s a t i s f i e d w i t h t h e s e r v i c e s t h a t t h e y r e c e i v e . I n a d d i t i o n , t h e y f o u n d t h a t f o r e d u c a t e d women n e e d i n g a s s i s t a n c e w i t h f a m i l y p r o b l e m s , t h e h e l p r e c e i v e d f r o m p r o f e s s i o n a l s was more s a t i s f a c t o r y t h a n h e l p r e c e i v e d f r o m f r i e n d s a n d r e l a t i v e s . Numerous s t u d i e s h ave e v a l u a t e d t h e c l i e n t s a t i s f a c t i o n o f p r o g r a m s f o r m e n t a l l y h a n d i c a p p e d c h i l d r e n , h o w e v e r , o n l y a h a n d f u l o f s t u d i e s h a v e e v a l u a t e d t h e c l i e n t s a t i s f a c t i o n o f p r o g r a m s f o r m e n t a l l y h a n d i c a p p e d p a r e n t s . P e t e r s o n a n d L i t t m a n ( 1 9 8 3 ) a s s e s s e d p r o g r a m s w h i c h were d e s i g n e d t o t e a c h p a r e n t i n g s k i l l s t o " h i g h r i s k " f a m i l i e s w h i c h i n c l u d e d m e n t a l l y h a n d i c a p p e d a d u l t s . I n t h e i r s t u d y , 72 p a r e n t s were a s k e d t o r e s p o n d t o a q u e s t i o n n a i r e i n d i c a t i n g t h e d e g r e e o f s a t i s f a c t i o n on a f o u r p o i n t s c a l e . N e a r l y one h a l f o f t h e p a r e n t s r e p o r t e d t h a t t h e t h e r a p i s t s , l i f e - s k i l l w o r k e r s , t e a c h i n g s t a f f , as w e l l as o t h e r p r o f e s s i o n a l s , h a d p r e s e n t e d t h e w o r k s h o p s i n a s y m p a t h e t i c m a n n e r , s h o w i n g d i g n i t y a nd r e s p e c t f o r m e n t a l l y h a n d i c a p p e d p a r e n t s . H owever, some p a r e n t s i n d i c a t e d t h a t a l t h o u g h t h e s e s s i o n s a t t h e p a r e n t t r a i n i n g w o r k s h o p s were v a l u a b l e , v e r y few o f them gave them "hands-on" a c t i v i t i e s w h i c h w o u l d have a l l o w e d them t o e x p e r i e n c e t h e r e a l s i t u a t i o n . I n a n o t h e r e v a l u a t i o n s t u d y , b y Budd a n d G r e e n s p a n ( 1 9 8 6 , ) c l i e n t s s t a t e d t h a t s e s s i o n s were n o t l o n g enough. They a l s o c o m p l a i n e d t h a t t h a t most o f t h e s e s e s s i o n s w e re " n o t h i n g more t h a n a n o t h e r one o f t h o s e j a r g o n c l a s s e s " w h i c h w ere d i f f i c u l t f o r c l i e n t s t o u n d e r s t a n d a n d a p p l y t h e s k i l l s t a u g h t . I n b o t h s t u d i e s , t h e n e e d f o r a n e x t e n s i o n o f t i m e a n d m o d i f i c a t i o n o f t e r m i n o l o g y was i n d i c a t e d . C o u n s e l l i n g S e r v i c e s I n a d d i t i o n t o b e n e f i t t i n g f r o m s e r v i c e s s u c h as t h e ones d e s c r i b e d a b o v e , many m e n t a l l y h a n d i c a p p e d p a r e n t s t a k e a d v a n t a g e f r o m c ommunity c o u n s e l l i n g s e r v i c e s . T h e s e s e r v i c e s a r e o f t e n b e n e f i c i a l t o m e n t a l l y h a n d i c a p p e d p a r e n t s w i t h m a r i t a l p r o b l e m s , a n d / o r who may be h a v i n g d i f f i c u l t i e s r a i s i n g f a m i l i e s ( B u d d & G r e e n s p a n , 1 9 8 4 ) . Sommers & Nycz ( 1 9 7 8 ) m o n i t o r e d c l i e n t s a t i s f a c t i o n w i t h t h e c o u n s e l l i n g s e r v i c e s p r o v i d e d t o m e n t a l l y h a n d i c a p p e d p a r e n t s a n d t h e i r f a m i l i e s . A q u e s t i o n n a i r e was d i s t r i b u t e d t o 100 " a t r i s k " p a r e n t s as w e l l as t h e p r o f e s s i o n a l s a s s o c i a t e d w i t h them. B o t h g r o u p s were t o a s s e s s a n d e v a l u a t e t h e a v a i l a b i l i t y a s w e l l as t h e q u a l i t y o f t h e s e r v i c e s t h a t t h e y were r e c e i v i n g . A p p r o x i m a t e l y 70% o f t h e p a r e n t s i n d i c a t e d o v e r a l l s a t i s f a c t i o n w i t h t h e s e r v i c e s r e c e i v e d . T w e n t y - f i v e p e r c e n t o f t h e c l i e n t s f o u n d t h e l i f e - s k i l l w o r k e r s t o be i m p e r s o n a l a nd c o l d ; t e n p e r c e n t o f f e l t t h a t t h e r e was a l a c k o f c o m m u n i c a t i o n . The r e m a i n i n g s i x p e r c e n t f e l t s e r v i c e s were n o t h e l p f u l . A p p r o x i m a t e l y 60% o f t h e t h e r a p i s t s a n d t h e c o u n s e l l o r s i n d i c a t e d t h a t o f t e n t h e y f e l t p r e s s u r e d f o r t i m e . I n a d d i t i o n t h e y f e l t t h a t many c o u p l e s j u s t n e e d e d e m o t i o n a l s u p p o r t w h i c h r e q u i r e d more t i m e t h a n was a v a i l a b l e . S i m i l a r s t u d i e s w e re done by German & M a i s t o ( 1 9 8 2 ) who f o u n d t h a t t i m e was a c r u c i a l f a c t o r i n d e t e r m i n i n g how s a t i s f i e d t h e s e p a r e n t s were w i t h s e r v i c e s . H owever, d e s p i t e t h e t i m e c o n s t r a i n t s , a l m o s t a l l p a r e n t s i n d i c a t e d a h i g h l e v e l o f s a t i s f a c t i o n . FAMILY SUPPORT B e n e f a c t o r t o p a r e n t s u p p o r t F a m i l y members ( o r b e n e f a c t o r s ) p r o v i d i n g s u p p o r t o f t e n f e e l a s t r o n g s e n s e o f r e s p o n s i b i l i t y f o r t h e h a n d i c a p p e d p a r e n t ( T u c k e r & J o h n s o n , 1 9 8 8 ; E d g e r t o n , 1 9 6 7 ) . They a c c e p t t h e p a r e n t s ' i n a b i l i t y t o cope a n d t h e i r e v e n t u a l g o a l i s t o t e a c h t h e p a r e n t t o be i n d e p e n d e n t ( W i n i k , 1 9 8 1 ) . F l o o r e t a l . ( 1 9 7 5 ) s t u d i e d t h e c h a r a c t e r i s t i c s o f p a r e n t s who have made a s u c c e s s f u l a d j u s t m e n t t o t h e b i r t h o f a c h i l d . T h e i r s t u d y i n c l u d e d 80 p r e v i o u s l y i n s t i t u t i o n a l i s e d m e n t a l l y h a n d i c a p p e d p a r e n t s . The d a t a f r o m t h i s s t u d y i n d i c a t e d t h a t , i n g e n e r a l , more t h a n 63% o f t h e c h i l d r e n were r e c e i v i n g p r o p e r m e d i c a l a t t e n t i o n a n d a f f e c t i o n f r o m b o t h p a r e n t s . H owever, t h e y i n d i c a t e d t h a t t h e s e r e s u l t s w e r e d e p e n d e n t on t h e f r e q u e n c y o f c o n t a c t w i t h a t l e a s t one o t h e r f a m i l y member ( s u c h as a g r a n d m o t h e r , a u n t o r c o u s i n ) . Z e t l i n , W e i s n e r a n d G i l m o r e ( 1 9 8 5 ) s t u d i e d t h e r e l a t i o n s h i p b e t w e e n t h e p r o v i s i o n o f a d e q u a t e c h i l d c a r e a n d t h e f r e q u e n c y o f c o n t a c t w i t h t h e m a t e r n a l g r a n d m o t h e r . C l o s e c o n t a c t o f p a r e n t s w i t h m a t e r n a l g r a n d m o t h e r s i n d i c a t e d s u b s t a n t i a l i m p r o v e m e n t s i n c o p i n g s k i l l s . I n a d d i t i o n , e m o t i o n a l a n d m o r a l s u p p o r t f r o m t h e g r a n d m o t h e r s e n c o u r a g e d h a n d i c a p p e d m o t h e r s t o a d a p t t o t h e demands o f b e i n g a p a r e n t . I n an e a r l i e r s t u d y , Z e t l i n e t a l . ( 1 9 8 3 ) e x a m i n e d t h e i n t e r a c t i o n o f h a n d i c a p p e d m o t h e r s w i t h t h e i r c h i l d r e n i n t h e p r e s e n c e o f a m o t h e r - i n l a w as t h e b e n e f a c t o r . I n a d d i t i o n t o g i v i n g e n c o u r a g i n g a d v i c e , t h e r o l e o f t h e m o t h e r - i n - l a w was t o e n s u r e t h a t b o t h s u r v i v a l a n d m a i n t e n a n c e n e e d s o f t h e m o t h e r were met ( e . g f o o d , m e d i c a l n e e d s , h o u s e k e e p i n g and money management). R e s u l t s i n d i c a t e d t h a t ( o v e r a s p a n o f s i x months t o one y e a r ) , m o t h e r s b e n e f i t f r o m h a v i n g a f a m i l y member i n a s u p p o r t r o l e . I n t e r a c t i o n a n d a b i l i t y t o cope w i t h h o u s e h o l d management an d c a r e g i v i n g s k i l l s a l l showed i m p r o v e m e n t . I n t h e i r s t u d y , T u c k e r a n d J o h n s o n ( 1 9 8 8 ) d i s t i n g u i s h e d b e t w e e n " c o m p e t e n c e i n h i b i t i n g " a n d "competence p r o m o t i n g " s u p p o r t s y s t e m s t o d e m o n s t r a t e t h a t t h e mere e x i s t e n c e o f a s u p p o r t n e t w o r k was n o t a s u f f i c i e n t p r e d i c t o r o f p a r e n t a l c o m p e t e n c e . R a t h e r , i t was t h e n a t u r e o f t h e s u p p o r t -s p e c i f i c a l l y w h e t h e r i t e n c o u r a g e d i n d e p e n d e n c e a n d c o m p e t e n c e - t h a t d e t e r m i n e d p o s i t i v e o r n e g a t i v e r e s u l t s . T h ey e x a m i n e d t h e e f f e c t s o f f a m i l y s u p p o r t as w e l l as t h e n a t u r e o f s u c h s u p p o r t on h a n d i c a p p e d p a r e n t s ' c o p i n g s k i l l s I n t h e i r s t u d y o f 15 f a m i l i e s , f i v e w e r e t w o - p a r e n t f a m i l i e s . T h ese f a m i l i e s r e c e i v e d s u p p o r t f r o m t h e i r e x t e n d e d f a m i l i e s ( b e n e f a c t o r s ) , f i v e f r o m b e n e f a c t o r s as w e l l as l o c a l c o m m u n i t y o r g a n i z a t i o n s , a n d t h e r e m a i n i n g f i v e r e c e i v e d no s u p p o r t a t a l l . The r e s u l t s i n d i c a t e d t h a t f a m i l i e s r e c e i v i n g c ommunity s u p p o r t r e c e i v e d more e m o t i o n a l a s w e l l as m o r a l s u p p o r t a n d were more s u c c e s s f u l . . F u r t h e r m o r e , t h e y were f o u n d t o be f a r b e t t e r i n a d a p t i n g a n d r e s p o n d i n g t o t h e n e e d s o f t h e i r c h i l d r e n . The p a r e n t s (who r e c e i v e d no s u p p o r t ) became f r u s t r a t e d , a n g r y a n d i m p a t i e n t w i t h t h e i r c h i l d r e n . As a r e s u l t , t h e y were u n a b l e t o r e s p o n d t o t h e i r c h i l d r e n ' s b a s i c h y g i e n e a nd n u t r i t i o n a l n e e d s . T h e s e p a r e n t s a l s o f o u n d i t d i f f i c u l t a n d s t r e s s f u l t o manage t h e i r c h i l d r e n ' s d i s c i p l i n a r y p r o b l e m s . The r e s u l t s o f t h i s s t u d y i n d i c a t e d t h a t s u p p o r t f r o m f a m i l y members and community o r g a n i z a t i o n s a r e c o m p e t e n c e p r o m o t i n g . S i m i l a r r e s u l t s were r e p o r t e d i n an e a r l i e r s t u d y i n w h i c h G a l l a g h e r , Bechman a n d C r o s s ( 1 9 8 3 ) f o u n d t h a t t h e m o t h e r ' s f a m i l y h a d a s i g n i f i c a n t i m p a c t on m a t e r n a l s t r e s s . M o t h e r s who r e p o r t e d t h e l e a s t s t r e s s were r e c e i v i n g more h e l p f r o m t h e i r h u s b a n d s , s i s t e r s a n d o t h e r members o f t h e e x t e n d e d f a m i l y . C h a p t e r t h r e e w i l l d e s c r i b e t h e r e s e a r c h d e s i g n o f t h e s t u d y , t h e s t a t e m e n t o f t h e p r o b l e m a n d t h e p r o c e d u r e s u s e d t o c o l l e c t d a t a . 40 CHAPTER I I I . METHODOLOGY T h i s s t u d y i n v e s t i g a t e d t h o s e t y p e s o f p a r e n t i n g s k i l l s t h a t m e n t a l l y h a n d i c a p p e d p a r e n t s p e r c e i v e d as b e i n g t h e most d i f f i c u l t t o cope w i t h . An i n t e r v i e w i n g p r o c e d u r e i n v o l v i n g a s e t o f o p e n - e n d e d q u e s t i o n s (See A p p e n d i x A ) w i l l be u s e d t o e n a b l e t h e s u b j e c t s t o o p e n l y e x p r e s s t h e i r f e e l i n g s a b o u t t h e p r o b l e m s t h e y e n c o u n t e r as p a r e n t s . Open-ended q u e s t i o n s w i l l a l l o w t h e r e s p o n d e n t s t o p r o v i d e an i n -d e p t h e x p l a n a t i o n s a n d f e e l i n g s o f t h e i r c o p i n g s t r a t e g i e s . S t a t e m e n t o f P r o b l e m T h i s s t u d y a d d r e s s e s two i s s u e s : The t y p e s o f p r o b l e m s t h a t m e n t a l l y h a n d i c a p p e d p a r e n t s e n c o u n t e r when r a i s i n g c h i l d r e n a n d t h e i r p e r c e p t i o n s o f t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f t h e s u p p o r t s e r v i c e s . More s p e c i f i c a l y , i t s e e k s t o answer two s p e c i f i c q u e s t i o n s : a ) What t y p e s o f p a r e n t i n g s k i l l s do m e n t a l l y h a n d i c a p p e d p a r e n t s p e r c e i v e as t h e most d i f f i c u l t t o cope w i t h ? b ) What a r e t h e m a j o r s o u r c e s o f s u p p o r t s e r v i c e s f o r m e n t a l l y h a n d i c a p p e d p a r e n t s a n d what a r e t h e i r p e r c e p t i o n s o f t h e q u a l i t y a n d t h e a v a i l a b i l i t y o f t h e s u p p o r t s e r v i c e s ? I d e n t i f i c a t i o n a n d D e m o g r a p h i c I n f o r m a t i o n o f S u b j e c t s I n t h i s s t u d y , t h e sa m p l e c o n s i s t e d o f m e n t a l l y h a n d i c a p p e d m o t h e r s who were r e c e i v i n g s u p p o r t f r o m t h e l o c a l p a r e n t t r a i n i n g w o r k s h o p s i n t h e Lower M a i n l a n d a n d i n t h e S t a t e o f W a s h i n g t o n . The p a r t i c i p a n t s were c o n t a c t e d 41 t h r o u g h l o c a l community a s s o c i a t i o n s a n d o r g a n i z a t i o n s o f t h e m e n t a l l y h a n d i c a p p e d . The p r o c e s s o f o b t a i n i n g s u b j e c t s b e gan i n A p r i l 1989. A t t h a t t i m e , a l e t t e r e x p l a i n i n g t h e r e s e a r c h p r o j e c t was m a i l e d t o 20 l o c a l c o m m u n i t y a s s o c i a t i o n s i n B r i t i s h C o l u m b i a a n d W a s h i n g t o n . Out o f t h e 20, f i v e c o m m u n i t y a s s o c i a t i o n s r e s p o n d e d t o t h e p r o p o s a l o f t h e s t u d y . T hese a s s o c i a t i o n s c o n t a c t e d 25 m o t h e r s who a g r e e d t o p a r t i c i p a t e . A f o l l o w - u p o f t h e r e m a i n i n g a s s o c i a t i o n s l e d t o t h e f i n d i n g t h a t most o f them d i d n o t 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 h a n d i c a p p e d p a r e n t s . D e m o g r a p h i c I n f o r m a t i o n o f M e n t a l l y H a n d i c a p p e d M o t h e r s T a b l e 1 M o t h e r 's Age M ean=22years Range=19-32 y e a r s M a r i t a l S t a t u s M a r r i e d = 6 S i n g l e = 1 9 L e v e l o f E d u c a t i o n Elem.=17 S e c o n d a r y Grade 10: 8 S o u r c e o f Income Employed=4 A s s i s t a n c e f r o m Government =21 Number o f C h i l d r e n P e r F a m i l y Range=1 t o 3 Sex: M=12 F = 20 Ages Range= A v e r a g e Age o f 1 t o 8 y r s t h e c h i l d = 3 . 3 y e a r s 42 T a b l e 1 shows d e m o g r a p h i c i n f o r m a t i o n f o r t h e 25 m o t h e r s a n d 32 c h i l d r e n . As i n d i c a t e d i n t h e T a b l e , 25 m o t h e r s , who were b e t w e e n 19 and 32 y e a r s o f a g e , w i t h a mean o f 22 y e a r s , r e s p o n d e d t o t h e q u e s t i o n n a i r e . Of t h e 25 f a m i l i e s , s i x f a m i l i e s were t w o - p a r e n t f a m i l i e s a n d 19 were s i n g l e p a r e n t f a m i l i e s . I n f o u r o f t h e t w o - p a r e n t f a m i l i e s , t h e f a t h e r was e m p l o y e d f u l l - t i m e a n d i n t h e r e m a i n i n g 21 f a m i l i e s , t h e p a r e n t s r e c e i v e d some s o r t o f m o n e t a r y a s s i s a t a n c e f r o m t h e g o v e r m e n t . I n t e r m s o f t h e amount o f e d u c a t i o n t h a t t h e y h a d r e c e i v e d , o u t o f t h e 25 f a m i l i e s , 17 m o t h e r s h a d c o m p l e t e d e l e m e n t a r y s c h o o l a n d e i g h t h a d s t u d i e d a t t h e s e c o n d a r y l e v e l b u t h a d o n l y c o m p l e t e d g r a d e t e n . Instrument An o p e n - e n d e d q u e s t i o n n a i r e ( S e e a p p e n d i x A ) was d e v e l o p e d t o g a i n an i n - d e p t h u n d e r s t a n d i n g o f p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s . The f o r m a t o f t h e i n i t i a l q u e s t i o n n a i r e was one w h i c h f o r c e d s u b j e c t s t o c h o o s e p a r t i c u l a r r e s p o n s e s . H owever, t h e l o c a l a s s o c i a t i o n s s u g g e s t e d t h a t q u e s t i o n s o f s u c h a f o r m a t may not o n l y s t i g m a t i s e t h e s e p a r e n t s , i t may a l s o y i e l d d a t a w h i c h may n o t a n s w e r t h e r e s e a r c h q u e s t i o n s . As a r e s u l t , an o p e n - e n d e d q u e s t i o n n a i r e was u s e d t o e n c o u r a g e s u b j e c t s t o r e s p o n d f r e e l y . D u r i n g t h e c o u r s e o f d e v e l o p i n g t h e q u e s t i o n n a i r e , t h e r e was t h e c o n c e r n t h a t , t h e q u e s t i o n n a i r e was t o o l o n g a n d s u b j e c t s w o u l d become f a t i g u e d , d i s t r a c t e d o r o t h e r w i s e l e s s c o o p e r a t i v e . The b e s t e s t i m a t e was t h a t t h e q u e s t i o n n a i r e s h o u l d t a k e no l o n g e r t h a n f o r t y m i n u t e s . P i l o t S t u d y A p i l o t s t u d y was c o n d u c t e d w i t h f o u r m e n t a l l y h a n d i c a p p e d m o t h e r s t o d e t e r m i n e i f t h e i n t e r v i e w c o u l d be c o m p l e t e d w i t h i n f o r t y m i n u t e s a n d t o i d e n t i f y p o s s i b l e d i f f i c u l t i e s w i t h q u e s t i o n s . The i n t e r v i e w s t o o k p l a c e a t t h e o f f i c e s o f t h e l o c a l a s s o c i a t i o n s . A u d i o t a p e s o f e a c h i n t e r v i e w were made t o p r o v i d e a c r o s s c h e c k o f r e s p o n s e s r e c o r d e d i n w r i t t e n f o r m d u r i n g t h e i n t e r v i e w . T h i s was i m p o r t a n t t o e n s u r e t h e a c c u r a c y a n d c o m p l e t e n e s s o f t h e i n f o r m a t i o n c o l l e c t e d . A f t e r t h e i n t e r v i e w s , p a r t i c i p a n t s were i n v i t e d t o comment . S e v e r a l c h a n g e s were made as a r e s u l t o f t h e s e comments. F i r s t l y , p a r t i c i p a n t s f e l t t h a t t h e r e w e re t o o many q u e s t i o n s i n e a c h c a t e g o r y . S e c o n d l y , i t was f e l t t h a t t h e t e r m i n o l o g y a n d t h e p h r a s i n g o f t h e q u e s t i o n s were t o o d i f f i c u l t . I n o r d e r t o check f o r t h e p r e s e n c e o f p o t e n t i a l l y t h r e a t e n i n g i t e m s , p a r t i c i p a n t s were a s k e d i f t h e y b e l i e v e d o t h e r p e o p l e w o u l d f e e l u n c o m f o r t a b l e a n s w e r i n g a n y o f t h e q u e s t i o n s . None o f t h e p a r t i c i p a n t s b e l i e v e d t h i s w o u l d o c c u r . The i n c l u s i o n o f t h r e a t e n i n g i t e m s i n t h e i n t e r v i e w s c h e d u l e was t h e r e f o r e a ssumed t o be a t a minimum l e v e l . 44 The f i n a l f o r m o f t h e q u e s t i o n n a i r e c o n s i s t e d o f q u e s t i o n s o r g a n i s e d i n t o s i x m a j o r c a t e g o r i e s : i ) d e m o g r a p h i c i n f o r m a t i o n , i i ) n u t r i t i o n a l a n d meal p l a n n i n g s k i l l s , i i i ) home s a f e t y a n d e m e r g e n c y s k i l l s , i v ) d i s c i p l i n e a n d b e h a v i o u r management, v ) I n t e r a c t i o n , p l a y and s t i m u l a t i o n , a n d v i ) i d e n t i f i c a t i o n a n d a s s e s s m e n t o f s u p p o r t s e r v i c e s . I n t e r v i e w P r o c e d u r e s Of t h e 25 i n t e r v i e w s , 12 were c o n d u c t e d b y t h e i n v e s t i g a t o r . The r e m a i n i n g 13 m o t h e r s were i n t e r v i e w e d b y l i f e - s k i l l w o r k e r s a t t h e l o c a l a s s o c i a t i o n s . T h e r e f o r e , w i t h t h e e x c e p t i o n o f 13 i n t e r v i e w s , a l l were a u d i o t a p e d t o p r o v i d e a c r o s s c h e c k o f r e s p o n s e s r e c o r d e d i n w r i t t e n f o r m . D a t a A n a l y s i s I n t h i s q u e s t i o n n a i r e , r e s p o n d e n t s w e re g i v e n t h e o p p o r t u n i t y t o make s u b j e c t i v e r e s p o n s e s i n d e s c r i b i n g a n d d i s c u s s i n g t h e i r e x p e r i e n c e s i n r a i s i n g c h i l d r e n . Where p o s s i b l e , a t t h e e n d o f e a c h i n t e r v i e w , v e r b a t i m r e s p o n s e s f o r e a c h q u e s t i o n were t r a n s c r i b e d . T h e s e t r a n s c r i p t i o n s were a n a l y s e d f o r p a t t e r n s o f r e s p o n s e s . C h a p t e r f o u r w i l l p r o v i d e a d e s c r i p t i v e a n a l y s i s o f t h e r e s u l t s , t o g e t h e r w i t h g r a p h s a nd t a b l e s w h i c h w i l l be u s e d t o r e p o r t t h e f i n d i n g s o f t h e s t u d y . 45 CHAPTER I V . RESULTS T h i s c h a p t e r p r e s e n t s t h e r e s u l t s o f t h e s t u d y . The d a t a i s o r g a n i z e d u n d e r t h e f o l l o w i n g c a t e g o r i e s : i ) I n t e r v e n t i o n s f r o m t h e M i n i s t r y , i i ) t y p e s o f h a n d i c a p s i n t h e c h i l d r e n i i i ) n u t r i t i o n a l a n d m e n u - p i a n n i n g s k i l l s , i v ) d i s c i p l i n e a n d b e h a v i o u r management, v ) home s a f e t y a n d eme r g e n c y a n d v i ) i n t e r a c t i o n , p l a y a n d s t i m u l a t i o n . D a t a r e g a r d i n g s u p p o r t s y s t e m s i s c l a s s i f i e d i n t o two g r o u p s : f o r m a l a n d f a m i l y s u p p o r t s y s t e m s . I n t e r v e n t i o n s f r o m t h e M i n i s t r y Out o f t h e 25 m o t h e r s , e i g h t i n d i c a t e d t h a t t h e M i n i s t r y h a d t e m p o r a r i l y r e m o v e d t h e i r c h i l d r e n f r o m t h e i r c a r e a n d were s u b s e q u e n t l y p l a c e d i n f o s t e r c a r e . T a b l e 2 shows t h e number o f c h i l d r e n who were p l a c e d i n f o s t e r c a r e . T a b l e 2 Number o f C h i l d r e n Removed P e r F a m i l y Number o f C h i l d r e n Sex Age a t t h e t i m e M F o f r e m o v a l 2 1 1 1 8 mos . 3 1 1 1 3 1 2 1 1 6 mos . 2 1 1 4 1 1 1 2 2 1 1 1 10 mos. 2 1 1 11 mos 16 mos 1 1 6 mos As i t c a n be s e e n f r o m T a b l e 2, t h e number as w e l l as t h e ages o f t h e c h i l d r e n t h a t were p l a c e d i n f o s t e r c a r e v a r i e d . The a v e r a g e l e n g t h o f t h e s t a y i n f o s t e r c a r e r a n g e d a n y w h e r e f r o m one month t o two y e a r s . A l t h o u g h s p e c i f i c r e a s o n s f o r t h e r e m o v a l o f t h e c h i l d r e n were g i v e n , t h e y were n o t a l w a y s u n d e r s t o o d by t h e m o t h e r s . As a r e s u l t , m o t h e r s p e r c e i v e d t h a t t h e i r c h i l d r e n were r e m o v e d b e c a u s e o f t h e i r own i n a d e q u a c i e s a n d i n c o m p e t e n c i e s . E x a m p l e s o f s u c h p e r c e p t i o n s w e r e : 47 " I d o n ' t k n o w . . . . t h e y s a i d t h a t I was n o t w e l l e nough" "He s a i d t h a t I won't be a b l e t o manage on my own" "They t h i n k I'm dumb" " I b e t t h e y d i d i t b e c a u s e t h e y f e l t t h a t I won't l o v e my b a b y " S i n c e a l l t h e s u b j e c t s i n t h e s t u d y were m e n t a l l y h a n d i c a p p e d , d a t a were a l s o c o l l e c t e d t o see i f t h e c h i l d r e n m a n i f e s t e d a n y f o r m s o f h a n d i c a p s . The r e s u l t s w h i c h i n d i c a t e t h e number o f c h i l d r e n w i t h d i f f e r e n t t y p e s o f h a n d i c a p s a r e r e p r e s e n t e d i n T a b l e 3. T a b l e 3 F r e q u e n c y of H a n d i c a p s i n C h i l d r e n b y G e n der D i s a b i l i t y / H a n d i c a p M a l e F e m a l e T o t a l L e a r n i n g D i s a b i l i t y 2 1 3 A u t i s t i c T e n d e n c i e s 1 2 3 D e v e 1 o p m e n t a l l y D e l a y e d 9 6 15 S p e e c h D e l a y 2 2 4 B e h a v i o u r D i s o r d e r s 2 0 2 M e n t a l l y H a n d i c a p p e d 0 1 1 No D i s a b i l i t i e s 2 2 4 T o t a l 18 14 32 I t c a n be s e e n f r o m T a b l e 3 t h a t o u t o f t h e t o t a l number o f c h i l d r e n , o n l y 4 ( 1 2 % ) were i n d i c a t e d t o have no s p e c i f i c h a n d i c a p s . T h i s may be due t o t h e f a c t t h a t t h e s e c h i l d r e n were t o o young f o r d e v e l o p m e n t a l d e l a y s o r h a n d i c a p s t o be i d e n t i f i e d . H o w e v e r , t h e r e m a i n i n g 28 were f o u n d t o have m i l d t o m o d e r a t e d e g r e e s o f h a n d i c a p s . F o r e x a m p l e , 15 o u t o f 32 ( 4 7 % ) m a n i f e s t e d some d e g r e e o f d e l a y i n t h e i r d e v e l o p m e n t a l m i l e s t o n e s . S u c h c h i l d r e n were d e l a y e d i n w a l k i n g , t o i l e t t r a i n i n g , a n d l a n g u a g e f o r m a t i o n . M a n i f e s t a t i o n s o f o t h e r f o r m s o f h a n d i c a p s v a r i e d . F i g u r e 1 shows t h e b r e a k d o w n o f s p e c i f i c t y p e s o f h a n d i c a p s i n g i r l s a n d b o y s . Two o u t o f t w e n t y g i r l s h a d a u t i s m w h i l e two o u t o f 12 b o y s were b e h a v i o u r a l l y d i s o r d e r e d ; s i x o u t o f 20 g i r l s a n d n i n e o u t o f 12 b o y s m a n i f e s t e d some s o r t o f d e v e l o p m e n t a l d e l a y s . . Female Male 1 1 1 r 0 2 4 - r 6 NODISAB. MENT.HAND. • BEH.DIS0R E2 DEV.DELAY SPEECH DEL AUTISTIC LEAR.DISAB. I ' 8 10 Number of Children F i g u r e 1: Frequency of Handicaps by Gender I n a d d i t i o n t o t h e v a r y i n g number o f c h i l d r e n w i t h s p e c i f i c h a n d i c a p s , t h e ag e s o f c h i l d r e n v a r i e d w i t h t h e t y p e o f h a n d i c a p . F i g u r e 2 g r a p h i c a l l y r e p r e s e n t s t h e a v e r a g e ages o f c h i l d r e n w i t h s p e c i f i c h a n d i c a p . us o CD < e CO M LEARDISAB. 0 AUTISTIC H SPEECH DEL E2 DEV.DELAY • BERDISOR H MENT.HAND. M NODISAB. Types of Handicaps l S i i r e _ 2 : M e a n A g e s o f C h i l d r e n W i t h H a n d i c a p s . 5 1 N u t r i t i o n a l a n d M e a l P l a n n i n g S k i l l s I n o r d e r t o d e t e r m i n e t h e m o t h e r s ' l e v e l o f a w a r e n e s s o f t h e i m p o r t a n c e o f n u t r i t i o n , q u e s t i o n s were a s k e d t o d e t e r m i n e t h e d e g r e e t o w h i c h m o t h e r s were a b l e t o u n d e r s t a n d t h e i m p o r t a n c e o f an a p p r o p r i a t e d i e t f o r t h e i r c h i l d r e n . Where p o s s i b l e , r e s u l t s w i l l be r e p o r t e d u n d e r s p e c i f i c q u e s t i o n s . The f i r s t q u e s t i o n was r e l a t e d t o t h e m o t h e r s ' a b i 1 i t y t o i d e n t i f y f o o d s t h a t b e l o n g e d i n s p e c i f i c f o o d g r o u p s . . The names o f t h e f o u r f o o d g r o u p s were g i v e n t o t h e m o t h e r s . I n t e r v i e w e r : I f I g a v e y o u t h e f o u r f o o d g r o u p s , I w o u l d l i k e y o u t o g i v e me an e x a m p l e o f 3 i t e m s ( f o o d ) t h a t b e l o n g s i n t h a t g r o u p . T a b l e 4 shows t h e f r e q u e n c y o f t h e number o f c o r r e c t r e s p o n s e s p e r f o o d g r o u p . T a b l e 4 F r e q u e n c y o f M o t h e r s G i v i n g C o r r e c t R e s p o n s e s Number o f I t e m s F o o d G r o u p F/V M/D M B/C T h r e e I t e m s 23 18 2 5 Two I t e m s 2 4 21 18 One I t e m 0 3 2 2 I n c o r r e c t R e s p o n s e s 0 0 1 0 5 2 As i t c a n be s e e n f r o m T a b l e 4 t h e r a t e o f i n c o r r e c t r e s p o n s e s was v e r y l o w . F o r a l l f o o d g r o u p s , m o t h e r s were a b l e t o g i v e a t l e a s t two i t e m s . The r e s p o n s e r a t e f o r "one i t e m " was a l s o v e r y low i n t h a t s e v e n o u t o f t w e n t y - f i v e m o t h e r s c o u l d i d e n t i f y one i t e m p e r f o o d g r o u p . To f u r t h e r g a i n an u n d e r s t a n d i n g o f t h e m o t h e r s ' a w a r e n e s s o f h e a l t h y f o o d s , m o t h e r s were a s k e d t h e f o l l o w i n g q u e s t i o n s : I n t e r v i e w e r : What do y o u t h i n k a r e g o o d e x a m p l e s o f n u t r i t i o u s ( h e a l t h y ) f o o d s ? What do y o u t h i n k a r e g o o d e x a m p l e s o f f o o d s t h a t a r e n o t h e a l t h y T a b l e 5 r e p r e s e n t s t h e d i s t r i b u t i o n o f f o o d s t h a t w e r e p e r c e i v e d a s b e i n g n u t r i t i o u s a n d n o n - n u t r i t i o u s b y t h e m o t h e r s-T a b l e 5 T y p e s o f F o o d s P e r c e i v e d a s N u t r i t i o u s a n d Not N u t r i t i o u s I t e m F r e q u e n c y o f R e s p o n s e s N u t r i t i o u s Not N u t r i t i o u s I c e - C r e a m 8 -M i l k 20 -P o t a t o C h i p s - 18 C andy - 23 C o o k i e s - 1 F r u i t 19 -I n a d d i t i o n t o see i f t h e y w e re a b l e t o d i s t i n g u i s h f o o d s w h i c h w e re h e a l t h y f r o m t h o s e w h i c h were n o t , m o t h e r s were a l s o a s k e d why t h e y c o n s i d e r e d t h e s e f o o d s a s b e i n g n u t r i t i o u s o r n o n - n u t r i t i o u s . Some o f t h e r e a s o n s w e r e : "Too many c o o k i e s c a n be b a d f o r l u n c h - h e ' 1 1 g e t l o t s o f c a v i t i e s " " I c e - C r e a m i s g o o d b e c a u s e i t ' s made o f m i l k " "He won't grow enough i f he d o e s n ' t have e n e r g y " "They w o u l d g e t t o o f a t w i t h a l l t h o s e f r i e s " " M i l k i s g o o d 'cause i t c a n make y o u r b o n e s s t r o n g a n d . . . a l s o i t c a n make y o u r t e e t h w h i t e " W i t h r e s p e c t t o b a l a n c e d m e a l s , m o t h e r s were a s k e d t o g i v e e x a m p l e s o f two m e a l s t h a t t h e y s e r v e d a n d w h i c h t h e y c o n s i d e r e d t o be n u t r i t i o u s . T a b l e 6 shows t h e p e r c e n t a g e s o f m o t h e r s who s e r v e d m e a l s w h i c h t h e y p e r c e i v e d as b e i n g n u t r i t i o u s . T a b l e 6 T y p i c a l M e a l s S e r v e d a n d P e r c e i v e d a s b e i n g N u t r i t i o u s M e a l P e r c e n t a g e s o f M o t h e r s Hot Dogs a n d C h i p s 8 5 % Ha m b u r g e r s a n d C h i p s 7 5 % C h i n e s e F o o d 1 0 % L a s a g n e 5% S a n d w i c h e s 60% Soups 7 5 % A f t e r s t a t i n g t h e t y p e o f m e a l s t h a t t h e y t y p i c a l l y s e r v e d , m o t h e r s were g i v e n a l i s t o f m e a l s a n d w e r e a s k e d t o i n d i c a t e i f t h e y c o n s i d e r e d t h e s e m e a l s a s b e i n g n u t r i t i o u s f o r t h e i r c h i l d r e n . R e s u l t s s h o w i n g t h e d a t a a r e t a b u l a t e d i n T a b l e 7. T a b l e 7 M e a l s P e r c e i v e d a s N u t r i t i o u s o r N o t - N u t r i t i o u s Type o f M e a l N u t r i t i o u s M e a l Not N u t r i t i o u s M c D o n a l d s Eggs a n d T o a s t M a shed P o t a t o e s a n d Beans S t i r - f r i e d B e e f v e g . a n d r i c e W i e n e r s / H o t Dogs V e g e t a b l e Soup M a c a r o n i & C h e e s e F i s h S. C h i p s 18 20 25 21 19 15 19 15 0 4 6 1 6 7 5 10 O v e r a l l r e s u l t s i n d i c a t e d t h a t m o t h e r s w ere aware o f t h e i m p o r t a n c e o f p r o v i d i n g a p p r o p r i a t e n u t r i t i o n f o r t h e i r c h i l d r e n . I n a d d i t i o n , t h e y d i d n o t p e r c e i v e a n y d i f f i c u l t i e s i n t h i s a r e a o f p a r e n t i n g . D i s c i p l i n e a nd B e h a v i o u r Management' I n t h i s s e c t i o n , q u e s t i o n s were a s k e d t o d e t e r m i n e i f m o t h e r s p e r c e i v e d d i s c i p l i n e as b e i n g an i m p o r t a n t p a r t o f r a i s i n g c h i l d r e n . I n a d d i t i o n , t h e y were a l s o a s k e d t o i n d i c a t e why t h e y c o n s i d e r e d i t t o be i m p o r t a n t . R e s u l t s i n d i c a t e d t h a t a l l m o t h e r s w ere aware o f t h e i m p o r t a n c e o f d i s c i p l i n i n g t h e i r c h i l d r e n . H o w e v e r , 8 5 % o f t h e m o t h e r s were n o t a b l e t o g i v e s p e c i f i c r e a s o n s f o r i t s i m p o r t a n c e . " I d o n ' t know- I c a n ' t t h i n k o f a n y " . "We're s u p p o s e d t o - t h a t ' s what t h e y s a i d " Some o f t h e t y p i c a l r e s p o n s e s f r o m t h e r e m a i n i n g 1 5 % o f t h e m o t h e r s w ere : " . . . i t ' s i m p o r t a n t b e c a u s e he h a s t o l e a r n t h a t he c a n ' t g e t away w i t h s t u f f " " . . . o r e l s e t h e y won't l i s t e n t o anyone when t h e y grow up" To see i f m o t h e r s knew when c h i l d r e n n e e d e d t o be d i s c i p l i n e d , t h e f o l l o w i n g q u e s t i o n was a s k e d : I n t e r v i e w e r : I n what t y p e s o f c i c u m s t a n c e s do y o u f e e l i t ' s n e c e s s a r y t o d i s c i p l i n e y o u r c h i l d ? M o t h e r s ' r e s p o n s e s were r e v i e w e d a n d o r g a n i z e d u n d e r f o u r c a t e g o r i e s as r e p o r t e d i n T a b l e 8. T a b l e 8 O c c a s i o n s a s P e r c e i v e d t o be i m p o r t a n t t o D i s c i p l i n e C h i l d r e n P e r c e i v e d O c c a s i o n F r e q u e n c y o f M o t h e r s D u r i n g b e d t i m e 60% A g g r e s s i v e b e h a v i o u r 80% E a t i n g H a b i t s 60% D o e s n ' t c l e a n up bedroom 60% As i t c a n be s e e n f r o m T a b l e 8, most o f t h e m o t h e r s d s i s c i p l i n e d t h e i r c h i l d r e n when t h e y b e h a v e d a g g r e s s i v e l y t o w a r d o t h e r s ; 60% o f t h e m o t h e r s i n d i c a t e d t h a t t h e y t r i e d t o d i s c i p l i n e t h e i r c h i l d r e n when t h e y d i d n ' t c l e a n up t h e i r rooms ( p u t t i n g t h e i r t o y s a w a y ) ; 60% i n d i c a t e d t h a t t h e y d i s c i p l i n e d them when t h e i r c h i l d r e n w o u l d n o t go t o be d a n d when t h e y w o u l d n o t f i n i s h t h e i r f o o d . I n o r d e r t o d e t e r m i n e how t h e y d i s c i p l i n e d t h e i r c h i l d r e n , m o t h e r s were a s k e d t o i n d i c a t e what s t r a t e g i e s t h e y u s e d . F i g u r e 3 r e p o r t s t h e i r r e s p o n s e s u n d e r 4 c a t e g o r i e s . 20 T , Strategies F i c ? u r e 3 : S t r a t e g i e s U s e d t o D i s c i p l i n e C h i l d r e n . As i n d i c a t e d b y F i g u r e 3, 17 o f t h e m o t h e r s f e l t t h a t t h e y e x p e r i e n c e d g r e a t d i f f i c u l t y i n d e c i d i n g how t o d i s c i p l i n e t h e i r c h i l d r e n . They a d d e d t h a t t h e i r i n a b i l i t y t o d e c i d e o f t e n l e d t o f e e l i n g s o f f r u s t r a t i o n , a n g e r a n d h e l p l e s s n e s s . A p p r o x i m a t e l y t h r e e o f t h e m o t h e r s s p a n k e d t h e i r c h i l d r e n ; two s a t down a n d t a l k e d t o t h e i r c h i l d r e n , a n d two o f t h e m o t h e r s g o t f r u s t r a t e d a n d s e n t t h e i r c h i l d r e n t o t h e i r r ooms. O v e r a l l r e s u l t s i n d i c a t e d t h a t a l t h o u g h a l l m o t h e r s were aware o f t h e i m p o r t a n c e o f d i s c i p l i n i n g t h e i r c h i l d r e n , many o f them p e r c e i v e d t h e p r o c e s s o f d i s c i p l i n g t h e i r c h i l d r e n t o be d i f f i c u l t Home S a f e t y a n d E m e r g e n c y T h i s s e c t i o n o f t h e q u e s t i o n n a i r e f o c u s e d on t h e a b i l i t i e s o f t h e p a r e n t s t o r e s p o n d t o s c e n a r i o s r e l a t i n g t o emer g e n c y s i t u a t i o n s . I t a l s o i n c l u d e d q u e s t i o n s w h i c h r e l a t e d t o t h e s t r a t e g i e s w h i c h w o u l d be u n d e r t a k e n i n s p e c i f i c e m e r g e n c y s i t u a t i o n s . I n t h e f i r s t p a r t , m o t h e r s were a s k e d t h e k i n d s o f p r e c a u t i o n s t h a t t h e y w o u l d t a k e i n p r e v e n t i n g t h e i r c h i l d r e n f r o m c e r t a i n a c c i d e n t s i n t h e home. F o r e x a m p l e , t h e f o l l o w i n g q u e s t i o n was a s k e d : I n t e r v i e w e r : I n y o u r home,what s t e p s w o u l d y o u t a k e f r o m p r e v e n t i n g ( s t o p p i n g ) y o u r c h i l d f r o m : a ) f a l l i n g f r o m t h e window? The m o t h e r s r e s p o n d e d t o t h i s q u e s t i o n i n many d i f f e r e n t w a ys. Some o f t h e t y p i c a l r e s p o n s e s i n c l u d e d : I w o u l d p u t a l o c k on t h e window I ' d g e t r i d o f t h e window P u t a s c r e e n on t h e window so he c a n ' t l o o k o u t . I w o u l d n ' t l e a v e t h e window o p e n - k e e p i t c l o s e d S h o u l d remove c h a i r s o r t a b l e s f r o m t h e window a n d have n o t h i n ' b e s i d e t h e w i n d o w - s o she c a n ' t c l i m b up. The s e c o n d p a r t o f t h e q u e s t i o n r e q u i r e d them t o d e c i d e how t h e y w o u l d p r e v e n t t h e i r c h i l d f r o m " s l i p p i n g on t h e f l o o r " . The r e s u l t s i n d i c a t e d t h a t p a r e n t s knew t h e d a n g e r s as w e l l as t h e t y p e s o f p r e c a u t i o n s t o t a k e . T y p i c a l r e s p o n s e s w e r e : ...don't w a l k on wet f l o o r s I c l e a n my f l o o r s when my g i r l i s s l e e p i n g P i c k up t h e t h i n g s f r o m t h e f l o o r Be s u r e t h e f l o o r i s d r y I n a d d i t i o n t o t h e s e t y p e s o f q u e s t i o n s , m o t h e r s were a l s o a s k e d a b o u t o t h e r t y p e s o f p o t e n t i a l d a n g e r s i n t h e home. S p e c i f i c a l l y , m o t h e r s were a s k e d t o i d e n t i f y p o s s i b l e t y p e s o f i t e m s t h a t w o u l d be c o n s i d e r e d as b e i n g u n s a f e i n v a r i o u s p a r t s o f t h e h o u s e : a ) K i t c h e n a n d b ) C h i l d ' s b edroom. T h i s a l l o w e d t h e i n v e s t i g a t o r t o d e t e r m i n e t h e m o t h e r ' s a b i l i t y t o d e c i d e what was s a f e a n d u n s a f e f o r t h e i r c h i l d a t home. M o t h e r s i n d i c a t e d t h a t i t e m s s u c h a s h o t s t o v e s , h o t p o t s a n d messy k i t c h e n s were d a n g e r o u s f o r t h e c h i l d . I n a d d i t i o n , p a r e n t s w e re t h e n a s k e d t o e x p l a i n why t h e s e were c o n s i d e r e d t o be d a n g e r o u s . M o d a l r e s p o n s e s w e r e : n o t s a f e b e c a u s e he c a n g e t a l l b u r n t b e c a u s e c h i l d r e n l i k e t o p l a y a r o u n d w i t h t h e p o t s a n d p a n s , .. .and t h e p a n s may be h o t o r s o m e t h i n g c a n s p i l l on them. i f t h e k i t c h e n s a r e d i r t y a n d messy, t h e b a b y c a n e a s i l y t r i p o v e r . When p a r e n t s were a s k e d what t y p e s o f i t e m s i n t h e c h i l d ' s b edroom were u n s a f e , some o f t h e t y p i c a l r e s p o n s e s were i n t h e f o r m o f : I d o n ' t k e e p a n y p l a s t i c b a g s i n t h e rooms o r e l s e he c a n e a s i l y p u t i t on h i s h e a d and won't be a b l e t o b r e a t h e . no b i g w i r e s i n t h e room-she c a n e a s i l y s t r a n g l e h e r s e l f When my d a u g h t e r was wee, I a l w a y s mde s u r e t h a t t h e r e w o u l d n ' t be s m a l l o b j e c t s on t h e f l o o r o t h e r w i s e s h e ' d e a t i t up a n d p r o b a b l y c h o k e t o d e a t h No p i l l s i n t h e h e r room-she may t h i n k i t ' s c a n d y make s u r e t h a t t h e c r i b i s n o t b y t h e window O t h e r t y p e s o f q u e s t i o n s r e g a r d i n g home s a f e t y were t h o s e t h a t w o u l d i n d i c a t e i f t h e mo t h e r was aware o f p o i s o n o u s i t e m s , ways o f s t o r i n g s u c h i t e m s a n d ways o f d e a l i n g w i t h s i t u a t i o n s w h i c h i n v o l v e d a c c i d e n t s a n d e m e r g e n c i e s . The r e s u l t s f r o m t h e s e were t a l l i e d a n d 60 c o n v e r t e d t o p e r c e n t a g e s . F i g u r e 4 g r a p h i c a l l y s u m m a r i s e s t h e s e r e s u l t s . 100 - i 75-50-25-0 A B C D E Needs of Services Legend A Discipline and Behaviour Management B Socially Stimulating Environment C Time Management D Shopping/Menu Planning E Budgetting Fiqure 4: D i s t r i b u t i o n of M e n t a l l y Handicapped Mothers' S a f e t y and Emergency S k i l l s . 61 As i t c a n be s e e n f r o m F i g u r e 4, 8 5 % o f t h e m o t h e r s were a b l e t o i n d i c a t e w h i c h i t e m s were p o i s o n o u s o r u n s a f e f o r t h e c h i l d . T y p i c a l r e s p o n s e s t o t h i s q u e s t i o n were : A j a x oven c l e a n e r b l e a c h p i l l s a n d o t h e r s t u f f f r o m t h e d o c t o r s p e t f o o d i s n ' t v e r y g o o d f o r t h e c h i l d The r e m a i n i n g 1 5 % i n d i c a t e d t h a t t h e y d i d n o t have a n y t h i n g t h a t was p o i s o n o u s i n t h e h o u s e . T h e i r r e s p o n s e s w e r e : I o n l y have a l l t h e g o o d s t u f f i n t h e h o u s e Why w o u l d anyone want t o k e e p a n y t h i n g t h a t was p o i s o n o u s i n t h e h o u s e . . .I d o n ' t u n d e r s t a n d . When t h e i n t e r v i e w e r p r o v i d e d t h e s e m o t h e r s w i t h p r o b e s s u c h as : I n t e r v i e w e r : W e l l , what t y p e s o f c l e n s i n g a g e n t s do you use t o c l e a n y o u r b a t h t u b s o r k i t c h e n ? t h e m o t h e r s d i d n o t p e r c e i v e a n d / o r d i d n o t know t h e s e i t e m s as b e i n g h a r m f u l f o r t h e i r c h i l d r e n . I d o n ' t t h i n k i t was h a r m f u l A r e t h o s e t h i n g s ( b l e a c h , a j a x ) h a r m f u l ? I d i d n ' t know? I n t e r m s o f k n o w i n g how t o s t o r e t h i n g s t h a t were u n s a f e f o r t h e c h i l d , 22 ( 9 0 % ) m o t h e r s i n d i c t e d t h a t t h e y w o u l d e i t h e r s t o r e t h e i t e m s "up h i g h on t h e s h e l v e s " a n d " i n t h e c a b i n e t s " . The r e m a i n i n g 3 m o t h e r s s a i d t h a t t h e y w o u l d n o t k e e p a n y t h i n g t h a t w o u l d be h a r m f u l i n t h e h o u s e . R e s u l t s r e l a t i n g t o m e d i c a l e m e r g e n c y i n d i c a t e d t h a t a l l m o t h e r s were a b l e t o r e s p o n d s u c c e s s f u l l y t o s c e n a r i o s a n d q u e s t i o n s . S c e n a r i o s o f t h e f o l l o w i n g t y p e s were p r e s e n t e d : I n t e r v i e w e r : Y o u ' r e f e e d i n g y o u r c h i l d a n d a l l o f a s u d d e n , y o u r c h i l d b e g i n s t o c h o k e . Why do y o u t h i n k t h a t he c h o k e d ? How w o u l d y o u s t o p h i m f r o m c h o k i n g ? Who w o u l d y o u phone? M o t h e r s were, a b l e t o g e n e r a t e s e v e r a l r e a s o n s a s t o why t h e c h i l d c o u l d h a v e c h o k e d . T y p i c a l r e a s o n s w e r e : May be he a t e s o m t h i n g b i g He c o u l d have e a t e n s o m e t h i n g t h a t was t o o h a r d - l i k e a b i g chunk o f c a r r o t he a t e t o o much maybe she s w a l l o w e d s o m e t h i n g l i k e a p e n n y or s o m e t h i n g he p i c k e d up f r o m t h e f l o o r . I n a d d i t i o n t o g i v i n g t h e s e r e a s o n s , a l l t h e m o t h e r s were a b l e t o i n d i c a t e how t h e y w o u l d s t o p t h e c h i l d f r o m c h o k i n g . . . . h i t h i m on t h e b a c k C o u l d s e a r c h i n t h e mouth f o r t h e s t u f f a n d h i t s o f t l y on t h e b a c k Bend them o v e r t h e k n e e a n d p a t them on t h e b a c k S u c h f i n d i n g s r e g a r d i n g home s a f e t y a n d m e d i c a l e m e r g e n c y l e n d t o t h e f a c t t h a t w i t h e x p o s u r e t o s u p p o r t f r o m p a r e n t i n g w o r k s h o p s , m e n t a l l y h a n d i c a p p e d p a r e n t s a r e a b l e t o r e s p o n d t o t h e i r c h i l d r e n ' s m e d i c a l a n d s a f e t y n e e d s . R e s u l t s r e l a t i n g t o t h e m o t h e r s ' a w a r e n e s s o f t h e i m p o r t a n c e o f p r o v i d i n g a s a f e e n v i r o n m e n t f o r t h e i r c h i l d r e n showed t h a t t h e m o t h e r s d i d n o t p e r c e i v e t h i s a r e a as b e i n g a d i f f i c u l t p a r t o f p a r e n t i n g . I n t e r a c t i o n a n d S o c i a l S t i m u l a t i o n Q u e s t i o n s i n t h i s c a t e g o r y c e n t e r e d on how m o t h e r s i n t e r a c t e d w i t h t h e i r c h i l d r e n and e x p r e s s e d t h e i r l o v e , t h e t y p e s o f r e i n f o r c i n g s t r a t e g i e s t h e y u s e d t o a p p r o v e a n d d i s a p p r o v e o f c e r t a i n b e h a v i o u r s , t h e d e g r e e t o w h i c h t h e f a m i l i e s a n d t h e i r c h i l d r e n a s s o c i a t e d w i t h o t h e r f a m i l i e s , a n d t h e t y p e s o f s o c i a l a c t i v i t i e s o r c l u b s t h a t t h e i r c h i l d r e n were i n v o l v e d i n . From t h e f o u r p o s s i b l e c h o i c e s i ) p h y s i c a l c o n t a c t , i i ) v e r b a l e x p r e s s i o n s , i i i )pr i r n a r y r e i n f o r c e r - e .g a c a n d y ) a n d v i ) I d o n ' t know, m o t h e r s were a s k e d t o i n d i c a t e how t h e y e x p r e s s e d l o v e and a f f e c t i o n f o r t h e i r c h i l d r e n . Out o f t h e 25 m o t h e r s , 15 i n d i c a t e d t h a t t h e y u s e d hugs an d k i s s e s , t h r e e u s e d v e r b a l e x p r e s s i o n s ( s u c h as " I l o v e y o u " , " I c a r e f o r y o u , s w e e t i e " a n d " t a l k i n g g e n t l y t o h i m " ) , f o u r u s e d a c o m b i n a t i o n o f v e r b a l e x p r e s s i o n s and g i v i n g t h e c h i l d s o m e t h i n g ( e.g. c a n d y ) and t h e r e m a i n i n g t h r e e u s e d a c o m b i n a t i o n o f p h y s i c a l c o n t a c t and v e r b a l e x p r e s s i o n s . I n t e r m s o f r e i n f o r c i n g an a p p r o p r i a t e b e h a v i o u r , o u t o f t h e f o u r p o s s i b l e c h o i c e s ( v e r b a l p r a i s e , g i v e a p r i m a r y r e i n f o r c e r - a c a n d y / s t i c k e r , h u g g i n g , a n d d o n ' t k n o w ) , 16 m o t h e r s i n d i c a t e d t h a t t h e y v e r b a l l y p r a i s e d a n d h u g g e d t h e i r c h i l d , f i v e s a i d t h a t t h e y w o u l d hug t h e i r c h i l d a n d t h e r e m a i n i n g 4 i n d i c a t e d t h a t t h e y u s e d a c o m b i n a t i o n o f v e r b a l l y p r a i s i n g , g i v i n g t h e i r c h i l d a p r i m a r y r e i n f o r c e r and h u g g i n g t h e i r c h i l d . The d e g r e e o f s o c i a l i s a t i o n w i t h o t h e r f a m i l i e s was a n o t h e r a r e a o f c o n c e r n i n t h i s p a r t o f t h e q u e s t i o n n a i r e . When m o t h e r s were a s k e d i f t h e y a s s o c i a t e d w i t h o t h e r f a m i l i e s , s e v e n i n d i c a t e d t h a t t h e y f r e q u e n t l y went o u t w i t h f r i e n d s a n d n e i g h b o r s , 12 m o t h e r s a s s o c i a t e d w i t h t h e i r f a m i l i e s o n l y b u t d i d n o t have t h a t many f r i e n d s a n d t h e r e m a i n i n g s i x m o t h e r s d i d n ' t s o c i a l i s e a t a l l . R e s p o n s e s o f t h r e e m o t h e r s were : I d o n ' t r e a l l y know anyone b e s i d e s t h e p e o p l e h e r e . I d o n ' t have t h e t i m e . . . B y t h e t i m e I f i n i s h d o i n g e v e r y t h i n g w i t h h e r , i t ' s t i m e t o go t o s 1 e e p . P e o p l e d o n ' t t a l k t o me when I go o u t - t h e y d o n ' t l i k e my b o y - s o I d o n ' t l i k e g o i n g o u t w i t h them. I n t e r m s o f e n c o u r a g i n g t h e i r c h i l d r e n t o m i x w i t h o t h e r c h i l d r e n , 70% o f t h e m o t h e r s f e l t t h a t , i n s p i t e o f t h e i r e n c o u r a g e m e n t , t h e y o f t e n f e l t t h e i r c h i l d r e n were n o t w a n t e d b y f a m i l i e s o f o t h e r c h i l d r e n . O v e r a l l r e s u l t s r e l a t i n g t o t h e m o t h e r s ' a b i l i t y t o p r o v i d e a s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t , i n d i c a t e d t h a t 65 some m o t h e r s d i d p e r c e i v e t h i s s k i l l a s b e i n g a d i f f i c u l t p a r t o f p a r e n t i n g . I DENTIFICATION AND PERCEPTION OF SUPPORT SERVICES T h i s s t u d y a l s o i n v e s t i g a t e d t h e a v a i l a b i l i t y and t h e g e n e r a l p e r c e p t i o n s o f b o t h f o r m a l a n d f a m i l y s u p p o r t . F o r m a l S u p p o r t The l e n g t h o f t i m e t h a t t h e m o t h e r s h a d s p e n t a t t e n d i n g t h e p a r e n t i n g t r a i n i n g p r o g r a m s v a r i e d . I t r a n g e d f r o m 1 t o 3 y e a r s w i t h an a v e r a g e o f one y e a r . The m o t h e r s i n d i c a t e d t h a t t h e p a r e n t i n g t r a i n i n g p r o g r a m s were v e r y s u p p o r t i v e and h e l p f u l . These w o r k s h o p s r e q u i r e d p a r e n t s t o a t t e n d t h e s e s e s s i o n s where l i f e s k i l l w o r k e r s w o r k e d i n s m a l l g r o u p s t o t e a c h t h e p a r e n t s b a s i c s k i l l s i n v o l v e d i n menu-p l a n n i n g , home s a f e t y n a d d i s c i p l i n e . T h i s was done by b o t h r o l e p l a y i n g a n d m o d e l l i n g . I n a d d i t i o n t o t h i s , f o l l o w i n g t h e i n s t r u c t i o n a l s e s s i o n s , once a week, t h e l i f e - s k i l l w o r k e r s t h e n h e l p e d a n d o b s e r v e d t h e s e p a r e n t s a t home. When m o t h e r s were a s k e d i f t h e y w o u l d be a b l e t o cope w i t h o u t s u p p o r t f r o m t h e i r w o r k s h o p s , a l l o f them e x p r e s s e d t h a t t h e y w o u l d f e e l " l o s t , f r u s t r a t e d a n d h e l p l e s s " as t h e y w o u l d n ' t be a b l e t o c o p e . An e x a m p l e o f a r e s p o n s e f r o m one m o t h e r : I hope t h a t n e v e r h a p p e n s b e c a u s e t h e y ' d t a k e h i m away f r o m me. I l o v e ray s o n b u t t h e y won't b e l i e v e me t h a t I c a n be a g o o d mum. They t o o k h i m away once a n d t h e n I s t a r t e d c o m i n g h e r e f o r h e l p and t h e y g ave J o e y b a c k t o me . I n a d d i t i o n t o r e c e i v i n g s u p p o r t f r o m p a r e n t t r a i n i n g p r o r a m s , some m o t h e r s a l s o r e c e i v e d h e l p f r o m o t h e r members o f t h e i r a s s o c i a t i o n s . T a b l e 9 A d d i t i o n a l T y p e s o f S u p p o r t S e r v i c e s R e c e i v e d b y M o t h e r s Type o f S u p p o r t Number o f M o t h e r s R e c e i v i n g S e r v i c e s I n f a n t d e v e l o p m e n t 8 W o r k e r Homemaker S e r v i c e s 5 C o u n s e l l o r s 1 P u b l i c H e a l t h N u r s e 8 S o c i a l W o r k e r 10 T a b l e 9 i l l u s t r a t e s t h e t y p e s a n d t h e c o m b i n a t i o n o f s e r v i c e s t h a t m o t h e r s were r e c e i v i n g f r o m t h e i r a s s o c i a t i o n s . I n a d d i t i o n t o r e c e i v i n g h e l p f r o m p a r e n t t r a i n i n g w o r k s h o p s , some p a r e n t s were a l s o r e c e i v i n g a c o m b i n a t i o n o f s u p p o r t s e r v i c e s f r o m s o c i a l w o r k e r s , p u b l i c h e a l t h n u r s e s , c o u n s e l l o r s a n d i n f a n t d e v e l o p m e n t w o r k e r s . S u p p o r t v i s i t s f r o m homemakers r a n g e d f r o m one v i s i t t o t h r e e v i s i t s p e r week. S u p p o r t f r o m p u b l i c h e a l t h n u r s e s was g i v e n i f n e c e s s a r y o r i f r e q u e s t e d b y t h e m o t h e r . I n f a n t d e v e l o p m e n t w o r k e r s v i s i t e d m o t h e r s once a week a n d h e l p e d them i n s u c h s k i l l s a s m a k i n g m e a l s f o r t h e b a b y , b a t h i n g t h e b a b y a n d b a s i c c h i l d h y g i e n e . 67 In an attempt to see i f prenatal classes, i t was found mothers had attended the classes mothers had attended any that a t o t a l of sixteen as indicated in Figure 5. 80-1 20 0 A B C Legend A Mothers attending classes B Bothers completing classes C Bothers not attending classes ic[ure_5: D i s t r i b u t i o n of M e n t a l l y Handicapped Mothers' Perceptions of Needs of S e r v i c e s . F i g u r e 5 shows t h a t o u t o f t h e 16, o n l y 8 m o t h e r s a t t e n d e d t h e f u l l s e s s i o n . The r e m a i n i n g s t o p p e d a t t e n d i n g t h e c l a s s e s f o r s e v e r a l r e a s o n s . T y p i c a l r e s p o n s e s were i n t h e f o r m o f : " I c o u l d n ' t u n d e r s t a n d t h e s t u f f " " I t was t o o h a r d f o r me" " I was a l l a l o n e - i t w o u l d have b e e n n i c e t o have some company" "They were g o i n g t o o f a s t " " I d i d n ' t know what k i n d s o f q u e s t i o n s t o a s k - i t was b o r i n g " F e e l i n g s o f f r u s t r a t i o n s a n d i n c o m p e t e n c e y w ere a l s o e x p e r i e n c e d b y t h e s e m o t h e r s who f e l t "dumb" a n d " s t u p i d " b e c a u s e t h e y c o u l d n ' t u n d e r s t a n d t h e c o n c e p t s . T h i r t y - s i x p e r c e n t o f t h e m o t h e r s d i d n ' t a t t e n d any f o r m o f p r e n a t a l c l a s s e s b e c a u s e "nobody t o l d them a b o u t them" amd b e c a u s e t h e y were " t o o h a r d - i t . ' s l i k e g o i n g t o s c h o o l " . I n t h e f i n a l p a r t o f t h e s t u d y , m o t h e r s were a s k e d q u e s t i o n s r e l a t i n g t o t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f t h e s e r v i c e s t h a t t h e y were r e c e i v i n g . A l l m o t h e r s s t a t e d t h a t a l t h o u g h t h e y were s a t i s f i e d w i t h t h e a v a i l a b i l i t y a n d t h e f r e q u e n c y o f h e l p , t h e r e were some a r e a s i n w h i c h t h e y n e e d e d more h e l p i n t o be a b l e t o cope more e f f e c t i v e l y w i t h t h e i r c h i l d r e n . As shown i n F i g u r e 6, 8 5 % o f them f e l t t h a t t h e y n e e d e d a l o t o f h e l p i n d e c i d i n g how a n d when t o d i s c i p l i n e t h e i r c h i l d r e n . From t h e 25 m o t h e r s , 13 ( 5 2 % ) 69 f e l t t h a t t h e y n e e d e d more e x p o s u r e t o ways o f p r o v i d i n g a s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t f o r t h e i r c h i l d r e n . F i f t e e n o ut o f 25 ( 6 0 % ) f e l t t h a t t h e y a l w a y s " w a s t e d a l o t o f t i m e " and n e e d e d l i f e - s k i l l w o r k e r s t o show them e f f e c t i v e ways o f s p e n d i n g t i m e w i t h t h e i r c h i l d r e n . I n a d d i t i o n , t h e y f e l t t h a t a t home, t h e y h a d d i f f i c u l t y o r g a n i s i n g a n d p l a n n i n g a s c h e d u l e t o s p e n d t i m e w i t h t h e i r c h i l d r e n . The r e s u l t s a r e g r a p h i c a l l y s u m m a r i s e d i n F i g u r e 6. 100 ! Needs of Services Legend A Discipline and Behaviour Management B Socially Stimulating Environment C Time Management D Shopping/Menu Planning E Budgeting Figure 6 : D i s t r i b u t i o n of Mentally Handicapped Mothers' I n a d d i t i o n , m o t h e r s w e r e a l s o a s k e d i f t h e y were s a t i s f i e d w i t h t h e s t r u c t u r e o f t h e m a t e r i a l t h a t was p r e s e n t e d i n t h e w o r k s h o p s . 80% o f t h e m o t h e r s i n d i c a t e d t h a t r a t h e r t h a n g o i n g t o t h e w o r k s h o p s t h r e e t i m e s a week, i t w o u l d be more u s e f u l f o r them i f t h e l i f e - s k i l l w o r k e r s i n c r e a s e d t h e number o f home v i s i t s , t h u s a l s o i n c r e a s i n g t h e number o f "hands on" e x p e r i e n c e s . F a m i l y S u p p o r t The d e g r e e t o w h i c h m o t h e r s p e r c e i v e d s u p p o r t f r o m t h e i r f a m i l i e s was a l s o i n v e s t i g a t e d . T a b l e 10 M o t h e r s P e r c e i v i n g F a m i l i e s a s S u p p o r t i v e Spouse E x t e n d e d F a m i l y V e r y S u p p o r t i v e 8 4 Not S u p p o r t i v e 2 6 Not A v a i l a b l e 15 14 As shown i n T a b l e 1 0 , e i g h t m o t h e r s r e p o r t e d t h a t t h e y were h i g h l y s u p p o r t e d by t h e i r h u s b a n d s a n d two m o t h e r s i n d i c a t e d t h a t t h e i r h u s b a n d s d i d n o t h e l p them a t home w i t h t h e c h i l d r e n . The r e m a i n i n g 15 m o t h e r s were s i n g l e p a r e n t s . R e s u l t s r e g a r d i n g s u p p o r t f r o m e x t e n d e d f a m i l y members i n d i c a t e d t h a t t e n p a r e n t s w e re s u p p o r t e d by members o f t h e i r e x t e n d e d f a m i l i e s . Members s u c h as g r a n d m o t h e r s , a u n t s a n d m o t h e r - i n - l a w s came home on a w e e k l y b a s i s t o h e l p them a t home. S i x m o t h e r s i n d i c a t e d t h a t t h e y h a d no s u c h 71 s u p p o r t a n d t h e r e m a i n i n g n i n e i n d i c a t e d t h a t none o f t h e i r r e l a t i v e s l i v e d i n t h e i r n e i g h b o r h o o d s . C h a p t e r f i v e w i l l p r e s e n t t h e d i s c u s s i o n o f t h e f i n d i n g s , t h e c o n c l u s i o n s o f t h e s t u d y , s u g g e s t i o n s f o r f u t u r e r e s e a r c h a n d t h e l i m i t a t i o n s o f t h e s t u d y . CHAPTER V DISCUSSION AND CONCLUSIONS T h i s c h a p t e r w i l l p r e s e n t t h e d i s c u s s i o n a n d t h e c o n c l u s i o n s o f t h e f i n d i n g s , s u g g e s t i o n s f o r f u t u r e r e s e a r c h and t h e l i m i t a t i o n s o f t h e s t u d y . The r e s u l t s w i l l be d i s c u s s e d u n d e r s p e c i f i c c a t e g o r i e s . DISCUSSION H a n d i c a p s i n C h i l d r e n T h i s s t u d y f o u n d t h a t more t h a n 50% o f t h e c h i l d r e n m a n i f e s t e d some s o r t o f a h a n d i c a p . A l l c h i l d r e n i n two-p a r e n t f a m i l i e s h a d a h a n d i c a p w h i c r a n g e d f r o m h a v i n g l e a r n i n g d i s a b i l i t i e s , a u t i s t i c t e n d e n c i e s , d e v e l o p m e n t a l d e l a y s o r m e n t a l h a n d i c a p s . C h i l d r e n i n s i n g l e p a r e n t f a m i l i e s a l s o h a d d e v e l o p m e n t a l d e l a y s , s p e e c h d e l a y s a n d some t y p e s o f b e h a v i o r d i s o r d e r s . R e s e a r c h s t u d i e s r e l a t i n g t o c h i l d r e n o f h a n d i c a p p e d p a r e n t s have i n d i c a t e d t h a t t h e c h a n c e s o f a n y f o r m o f h a n d i c a p s o r r e t a r d a t i o n i s 40% h i g h e r i n c h i l d r e n when b o t h p a r e n t s a r e h a n d i c a p p e d . I t s o c c u r e n c e i s d e c r e a s e d when o n l y one p a r e n t i s h a n d i c a p p e d . S c a l l y ( 1 9 7 3 ) i n d i c a t e d t h a t i n c a s e s where o n l y one p a r e n t i s h a n d i c a p p e d , t h e p r e v a l a n c e o f d e l a y s o r h a n d i c a p s i n c h i l d r e n i s e v e n h i g h e r when t h e m o t h e r , r a t h e r t h a t t h a n t h e f a t h e r i s h a n d i c a p p e d . T h e r e f o r e t h e d e g r e e o f i n t e r a c t i o n ( a s o p p o s e d t o t h e h a n d i c a p ) b e t w e e n t h e m o t h e r and t h e c h i l d may p l a y a b i g g g e r r o l e i n c h i l d d e v e l o p m e n t . 1 'i I n t e r v e n t i o n s f r o m t h e M i n i s t r y M o t h e r s who h a d h a d t h e i r c h i l d r e n r e m o v e d f r o m t h e i r homes p e r c e i v e d t h a t o f t e n , t h e M i n i s t r y i n t e r v e n e d w i t h o u t p r o v i d i n g them w i t h a c h a n c e t o p r o v e t h e m s e l v e s a s a d e q u a t e p a r e n t s . S u c h a c t i o n s may w e l l be i n f r i n g i n g upon t h e i r r i g h t s i n t h a t . t h e r i g h t t o p a r e n t i n e v i t a b l y r e q u i r e s p a r e n t s t o d e m o n s t r a t e t h e i r a b i l i t y o t c a r e a n d where n e c e s s a r y , g a i n a c c e s s t o s u p p o r t s e r v i c e s t h a t meet t h e needs, o f , t h e p a r e n t s ( V o g e l , 1987 ). PARENTING S K I L L S N u t r i t i o n a l a n d Menu P l a n n i n g R e s u l t s i n d i c a t e d t h a t a l l m o t h e r s were a b l e t o i d e n t i f y f o o d s w h i c h b e l o n g e d t o s p e c i f i c f o o d g r o u p s . T h i s showed t h a t t h e y were aware o f t h e f o o d g r o u p s as w e l l as o f t h e s p e c i f i c t y p e s o f f o o d s t h a t b e l o n g e d i n t h e g r o u p s . I n a d d i t i o n , m o t h r s were a s o a b l e t o d i s t i n g u i s h b e t w e e n f o o d s w h i c h t h e y p e r c e i v e d as b e i n g n u t r i t i o u s a n d t h o s e w h i c h t h e y p e r c e i v e d as n o t b e i n g n u t r i t i o u s f o r t h e i r c h i l d r e n . M o t h e r s were n o t o n l y a b l e t o g i v e e x a m p l e s o f f o o d s w h c i h b e l o n g e d t o t h e s p e c i f i c c a t e g o r i e s , b u t t h e y were a l s o a b l e t o s t a t e why t h e y p e r c e i v e d t h e s e f o o d s t o be i n t h o s e g r o u p s . However, t h e i r p e r c e p t i o n s o f what c o n s t i t u t e d a n u t r i t i o u s b a l a n c e d meal v a r i e d . T h e i r p e r c e p t i o n o f c e r t a i n m e a l s ( e . g . h o t dogs a n d f r i e s ) as b e i n g h e a l t h y f o r t h e i r c h i l d r e n may w e l l be due t o what t h e y c o u l d a c t u a l l y a f f o r d r a t h e r t h a n t h e i r i n a b i l i t y t o d e t e r m i n e what c o n s t i t u t e d a b a l a n c e d m e a l . D i s c i p l i n e a n d B e h a v i o u r Management A l l m o t h e r s p e r c e i v e d d i s c i p l i n i n g as t h e most d i f f i c u l t a s p e c t o f p a r e n t i n g . A l t h o u g h a l l m o t h e r s were aware o f t h e i m p o r t a n c e o f d i s c i p l i n i n g t h e i r c h i l d r e n , t h e y p e r c e i v e d t h a t t h e y d i d n ' t know how t o manage i n a p p r o p r i a t e b e h a v i o u r i n t h e i r c h i l d r e n , and a s a r e s u l t , t h e y f e l t f r u s t r a t e d and h e l p l e s s w i t h t h e i r c h i d l r e n . R e s e a r c h i n t h i s a r e a i n d i c a t e s t h a t t h e i r d i f f i c u l t i e s may more be due t o t h e i r l i m i t e d e x p o s u r e t o a p p r o p r i a t e r o l e m o d e l s a n d t o m i n i m a l e x p o s u r e t o i n c i d e n t a l l e a r n i n g e x p e r i e n c e s . S u c h e x p e r i e n c e s a r e i m p o r t a n t f o r t h e a c q u s i t i o n as w e l l as t h e a p p l i c a t i o n o f a p p r o p r i a t e c a r e g i v i n g s k i l l s i n e v e r y d a y l i f e ( R u t t e r , 1 9 8 3 ) . Home S a f e t y a n d E m e r g e n c y F i n d i n g s s u g g e s t e d t h a t t h e m o t h e r s were n o t o n l y a b l e t o i n d i c a t e i t e m s t h a t t h e y p e r c e i v e d as b e i n g u n s a f e f o r t h e i r c h i d l r e n , b u t t h e y were a l s o a b l e t o r e s p o n d s u c c e s s f u l l y t o s c e n a r i o s r e l a t e d t o e m e r g e n c y s i t u a t i o n s . T h i s i n d i c a t e s t h a t w i t h s u p p o r t f r o m t h e t r a i n i n g w o r k s h o p s , m e n t a l l y h a n d i c a p p e d m o t h e r s a r e a b l e t o l e a r n s k i l l s n e c e s s a r y f o r a s a f e e n v i r o n m e n t . 75 I n t e r m s o f p r e v i o u s r e s e a r c h , t h e f i n d i n g s h e r e a r e s i m i l a r t o t h o s e o f Tymchuk, A n d r o n & A n d e r s o n ( 1 9 8 7 ) . I n t h e i r s t u d y , Tymchuk e t a l . f o u n d t h a t e x p o s u r e t o p a r e n t t r a i n i n g w o r k s h o p s l e d t o a n i n c r e a s e i n t h e i r a b i l i t y t o t a k e p r e c a u t i o n s i n e m e r g e n c y s i t u a t i o n s a n d a d e c r e a s e i n t h e numbe o f home a c c i d e n t s . I n t e r a c t i o n a n d S o c i a l S t i m u l a t i o n F i n d i n g s r e l a t i n g t o t h e m o t h e r s ' a b i l i t i e s t o i n t e r a c t and p r o v i d e s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t s i n d i c a t e d t h a t many m o t h e r s u s e d v e r b a l r e i n f o r c e m e n t a s o p p o s e d t o p r i m a r y r e i n f o r c e r s as a s t r a t e g y t o i n t e r a c t w i t h t h e i r c h i l d r e n and t o e n c o u r a g e a p p r o p r i a t e b e h a v i o u r . I n t e r m s o f s o c i a l i z i n g w i t h o t h e r s a r o u n d them, many m o t h e r s i n d i c a t e d t h a t t h e y d i d n ' t have many f r i e n d s . I n a d d i t i o n t h e y o f t e n f e l t t h a t t h e y were n o t w a n t e d . S u c h 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 p r e v i o u s r e s e a r c h i n t h a t L u s t h a u s , H a n r a h a n a nd L u s t h a u s ( 1 9 8 1 ) f o u n d t h a t d e s p i t e t h e f a c t t h a t many m e n t a l l y h a n d i c a p p e d a d u l t s l i v e i n a community s e t t i n g , t h e y " a r e v i r t u a l l y l i v i n g i n a w o r l d o f i s o l a t i o n f r o m n o n - h a n d i c a p p e d p e o p l e a r o u n d them" ( p . 2 5 ) . I n c o n t r a s t , W i n i k ( 1 9 8 7 ) f o u n d t h a t t h e m a j o r i t y o f m e n t a l l y h a n d i c a p p e d a d u l t s h a d f r i e n d s who t h e y met a t w o r k s h o p s o r s o c i a l r e c r e a t i o n a l programmes and t h a t many s u b j e c t s i n t h e i r s t u d y p a r t i c i p a t e d i n s o c i a l a c t i v i t i e s . SUPPORT SERVICES S i m i l a r i t i e s i n F o r m a l a n d F a m i l y S u p p o r t I n b o t h f o r m a l a n d f a m i l y s u p p o r t s y s t e m s , t h e r e i s an u n d e r l y i n g p r i n c i p l e o f c a r e f o r p e r s o n s w i t h m e n t a l h a n d i c a p s . P a r t i c u l a r l y , s u p p o r t i v e a c t i v i t i e s , b e h a v i o u r s and p r o c e d u r e s g i v e s u s t e n a n c e a n d a i d on a d a y t o d a y b a s i s a nd i n t i m e s o f c r i s i s . The s u p p o r t a n d r e s o u r c e s o f f e r e d t o m e n t a l l y h a n d i c a p p e d p a r e n t s may be p r o v i d e d t h r o u g h many c h a n n e l s a n d i t i s t h e i m p c a t o f t h i s w h i c h e n a b l e s t h e p a r e n t s t o f e e l s u p p o r t e d . The m u l t i d i m e n s i o n a l n a t u r e o f t h e c o n c e p t o f s u p p o r t i s a p p a r e n t i n b o t h f o r m a l a n d f a m i l y s y s t e m s o f s u p p o r t . D i f f e r e n c e s b e t w e e n F o r m a l a n d F a m i l y S u p p o r t F o r m a l s u p p o r t i s b a s e d upon t h e p r o v i s i o n o f c a r e i n s p e c i f i c a r e a s o f n e e d . The r e q u e s t s a n d e x p e c t a t i o n s made of p r o f e s s i o n a l o r g a n i z a t i o n s a r e i n h e r e n t l y d i s s i m i l a r f r o m t h o s e made o f r e l a t i v e s . The p r o f e s s i o n a l o r g a n i z a t i o n i s r e s p o n s i b l e f o r t h e p r o v i s i o n o f a s e r v i c e t o t h e i n d i v i d u a l . The s e r v i c e s r e n d e r e d a r e p l a c e d w i t h i n t i m e p a r a m e t e r s a n d t h e r e l a t i o n s h i p b e t w e e n t h e c l i e n t a n d t h e o r g a n i z a t i o n i s p a l c e d w i t h i n t h e same t i m e c o n s t r a i n t s . The s c o p e o f b e h a v i o u r i n f a m i l y s u p p o r t i s n o t d e f i n e d t o t h e same e x t e n t as i t i s i n f o r m a l s u p p o r t , a n d t h e r e f o r e , t h e r e l a t i o n s h i p may t a k e any c o u r s e . 77 F o r m a l S u p p o r t I n t h i s s t u d y , p a r e n t s i n d i c a t e d t h a t , i n a d d i t i o n t o r e c e i v i n g s u p p o r t f r o m t h e p a r e n t t r a i n i n g w o r k s h o p s , a d d i t i o n a l s u p p o r t f r o m t h e i r l o c a l a s s o c i a t i o n s , when r e q u i r e d , was a v a i l a b l e a n d t h e r e f o r e , t h e y were s a t i s f i e d w i t h t h e a v a i l a b i l i t y o f s e r v i c e s . M o t h e r s p e r c e i v e d l i f e - s k i l l w o r k e r s a s b e i n g v e r y s u p p o r t i v e i n t h e i r r o l e s . L i f e - s k i l l w o r k e r s w e re d e s c r i b e d a s b e i n g v e r y e m p a t h e t i c - s h o w i n g i n t e r e s t a n d c o n c e r n f o r t h e w e l l b e i n g o f t h e p a r e n t s as w e l l a s t h e c h i l d r e n . S u p p o r t f r o m p a r e n t t r a i n i n g w o r k s h o p s was n o t o n l y r e a d i l y a v a i l a b l e b u t i t was a l s o t a i l o r e d t o meet t h e needs o f t h e m e n t a l l y h a n d i c a p p e d m o t h e r s . F o r e x a m p l e , t h e m a t e r i a l t h a t was p r e s e n t e d i n t h e w o r k s h o p s was s i m p l i f i e d , a n d where n e c e s s a r y , t h e c o n t e n t was m o d i f i e d t o f a c i l i t a t e t h e u n d e s t a n d i n g o f t h e s k i l l s . H o wever, s u c h m o d i f i c a t i o n was n o t a l w a y s i m p l e m e n t e d i n o t h e r p r o g r a m s . F o r e x a m p l e , t h e l o w p e r c e n t a g e o f a t t e n d a n c e i n p r e n a t a l c l a s s e s was m a i n l y due t o c o m p l e x i t y o f t h e m a t e r i a l b i n g p r e s e n t e d . The r e s u l t s i n d i c a t e d t h a t n o t o n l y i s t h e r e a n e e d t o p r o v i d e s u p p o r t b u t t h e r e i s a l s o a n e e d t o m o d i f y and a d a p t t h e c o n t e n t t o meet t h e i r n e e d s . M o t h e r s i n d i c a t e d t h a t t h e g e n e r a l q u a l i t y o f s u p p o r t t h e y were r e c e i v i n g f r o m t h e i r p a r e n t t r a i n i n g w o r k s h o p s was v e r y g o o d , a n d w i t h o u t t h e s u p p o r t f r o m t h e s e w o r k s h o p s , t h e y w o u l d h a v e g r e a t d i f f i c u l t y i n c o p i n g w i t h t h e i r c h i l d r e n . H o w e v e r , t h e p a r e n t s s t a t e d t h a t c h a n g e s i n t h e s t r u c t u r e o f s e s s i o n s w o u l d be more b e n e f i c i a l . S p e c i f i c a l l y , s u c h c h a n g e s i n c l u d e d d e c r e a s i n g t h e number o f s e s s i o n s a t t h e a s s o c i a t i o n s a n d i n c r e a s i n g t h e number o f home v i s i t s , so t h a t t h e y w o u l d g e t more " h a n d s - o n " e x p e r i e n c e s . S u g g e s t i o n s f o r c h a n g e s i n t h e f o c u s o f t h e c o n t e n t w e re a l s o e x p r e s s e d . Many m o t h e r s p e r c e i v e d t h a t t h e t r a i n i n g w o r k s h o p s s h o u l d f o c u s on c e r t a i n p a r e n t i n g s k i l l s f o r a l o n g e r p e r i o d o f t i m e t h a n on o t h e r s . E x a m p l e s o f s u c h s k i l l s i n c l u d e t h o s e a s p e c t s o f p a r e n t i n g w h i c h w o u l d e n a b l e m o t h e r s t o d e v e l o p a n d a p p l y a p p r o p r i a t e s t r a t e g i e s o f d i s c i p l i n e . Some m o t h e r s a l s o i n d i c a t e d t t t h e y n e e d e d more s u p p o r t i n h e l p i n g them t o d e v e l o p ways b y w h i c h t h e y c o u l d p r o v i d e s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t s . F a m i l y S u p p o r t T h i s s t u d y i n d i c a t e d t h a t a l t h o u g h m o t h e r s were s a t i s f i e d w i t h t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f s u p p o r t r e c e i v e d f r o m t h e l o c a l a s s o c i a t i o n s , s u c h s a t i s f a c t i o n was n o t e x t e n d e d t o f a m i l y s u p p o r t . The p r e s e n c e o f a s p o u s e i n t h e home a n d t h e o p p o r t u n i t y t o i n t e r a c t w i t h e x t e n d e d f a m i l y members were two f a c t o r s w h i c h a f f e c t e d t h e a v a i l a b i l i t y a n d t h e q u a l i t y o f f a m i l y s u p p o r t . I n t w o - p a r e n t f a m i l i e s , most m o t h e r s r e c e i v e d c o n s i d e r a b l e s u p p o r t f r o m t h e i r h u s b a n d s . They i n d i c a t e d t h a t t h e i r h u s b a n d s n o t o n l y s h a r e d t h e r e s p o n s i b i l i t i e s b u t t h e y a l s o were a c t i v e l y i n v o l v e d t h e m s e l v e s w i t h t h e i r c h i d l r e n . S u c h s u p p o r t a l s o a f f e c t e d how w e l l t h e m o t h e r s 79 c o p e d w i t h t h e i r c h i l d r e n . P r e v i o u s r e s e a r c h e x a m i n i n g t h e r o l e o f f a m i l y s u p p o r t i n d i c a t e d t h a t m o t h e r s who r e p o r t e d t h e l e a s t l e v e l s o f s t r e s s , were r e c e i v i n g s u p p o r t f r o m t h e i r h u s b a n d s ( G a l l e g h e r , Bechman, & C r o s s , 1 9 8 3 ) . W i t h r e s p e c t t o s u p p o r t f r o m e x t e n d e d f a m i l i e s , most p a r e n t s i n d i c a t e d t h a t s u c h s u p p o r t was n o t a v a i l a b l e s i n c e t h e i r e x t e n d e d f a m i l i e s l i v e d a t c o n s i d e r a b l e d i s t a n c e f r o m them. Those m o t h e r s who d i d r e c e i v e s u p p o r t r e p o r t e d t h a t members o f t h e i r e x t e n d e d f a i l i e s n o t o n l y h e l p e d them w i t h t h e h o u s e h o l d c h o r e s , b u t t h e y a l s o p r o v i d e d them w i t h m o r a l and e m o t i o n a l s u p p o r t . C o n c l u s i o n s o f t h e S t u d y I n c o n c l u s i o n , r e s u l t s o f t h i s s t u d y c a n o n l y be g e n e r a l i s e d t o p e r s o n s who h a v e t h e same d e g r e e o f m e n t a l h a n d i c a p s as t h o s e who p a r t i c i p a t e d i n t h i s s t u d y . M o t h e r s w i t h m e n t a l h a n d i c p a s i n t h i s s t u d y showed an u n d e r s t a n d i n g o f t h e p a r e n t i n g s k i l l s d i s c u s s e d i n t h e s t u d y . The s k i l l s w h i c h t h e y p e r c e i v e d t o be t h e most d i f f i c u l t w e r e t h o s e o f d e v e l o p i n g a n d a p p l y i n g s t r a t e g i e s o f d i s c i p l i n e a n d p r o v i d i n g s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t s . T h i s s t u d y a l s o i n d i c a t e d t h a t s u p p o r t s e r v i c e s s h o u l d be m o d i f i e d a n d s i m p l i f i e d t o meet t h e n e e d s o f p e r s o n s w i t h m e n t a l h a n d i c a p s . More s p e c i f i c a l l y , t h e y s h o u l d be more s t r u c t u r e d , d i r e c t i v e , a n d where n e c e s s a r y , t h e y s h o u l d f o c u s on s k i l l s s u c h as d i s c i p l i n e a n d s o c i a l s t i m u l a t i o n , w h i c h t h e m o t h e r s p e r c e i v e d a s b e i n g t h e most d i f f i c u l t t o cope w i t h . L i m i t a t i o n s o f t h e S t u d y The s t u d y was l i m i t e d by t h e r e l a t i v e l y s m a l l s a m p l e s i z e a n d t h e r e f o r e , t h e r e s u l t s c a n o n l y be g e n e r a l i z e d t o p e r s o n s who p a r t i c i p a t e d i n t h e s t u d y and t o t h o s e who h ave t h e same d e g r e e o f m e n t a l h a n d i c a p . I n a d d i t i o n , i t was a l s o l i m i t e d b y t h e n a t u r e o f t h e p o p u l a t i o n s u r v e y e d i n t h a t m e n t a l l y h a n d i c p p e d m o t h e r s i n t h i s s a mple were a l l r e c e i v i n g p a r e n t t r a i n i n g s u p p o r t f r o m t h e i r l o c a l a s s o c i a t i o n s a n d a s a r e s u l t , t h e l a c k o f a c o n t r o l g r o u p n o t r e c e i v i n g s u c h s u p p o r t made i t d i f f i c u l t t o g e n e r a l i z e t h e f i n d i n g s . I n a d d i t i o n , s i n c e t h e s a m p l e was s e l e c t e d f r o m v a r i o u s l o c a l a s s o c a t i o n s , t h e t y p e s o f t r a i n i n g t h a t t h e m o t h e r s were r e c e i v i n g f r o m t h e i r l o c a l a s s o c i a t i o n s and t h e amount o f t i m e t h a t t h e y h a d s p e n t i n t h e t r a i n i n g w o r k s h o p s may h a v e v a r i e d . S u c h v a r i a b i l i t y may have a f f e c t e d t h e r e s u l t s . S i n c e i t was n o t p o s s i b l e t o t a p e a l l t h e i n t e r v i e w s , t h e l a c k o f c o n s i s t e n c y a n d u n i f o r m i t y may have a f f e c t e d t h e a c c u r a c y o f d a t a c o l l e c t i o n . F u r t h e r m o r e , t h e p o t e n t i a l f o r s o c i a l l y d e s i r a b l e r e s p o n s e s may h ave a f f e c t e d t h e v a l i d i t y o f d a t a . S u g g e s t i o n s F o r F u t u r e R e s e a r c h F u t u r e r e s e a r c h c o u l d i n c l u d e a g r o u p o f f a m i l i e s whose s o c i o - e c o n o m i c b a c k g r o u n d s a r e s i m i l a r t o t h o s e o f 81 p e r s o n s w i t h m e n t a l h a n d i c a p s . A n o t h e r u s e f u l a s p e c t t o be s t u d i e d c o u l d a l s o i n c l u d e t h e p e r c e p t i o n s o f l i f e s k i l l w o r k e r s o f t h e p a r e n t i n g s k i l l s o f p e r s o n s w i t h m e n t a l h a n d i c a p s a n d compare s u c h p e r c e p t i o n s w i t h t h o s e o f p e r s o n s w i t h m e n t a l h a n d i c a p s t o i d e n t i f y a n d i n v e s t i g a t e a n y d i s c r e p a n c i e s b e t w e e n t h e two g r o u p s . F i n a l l y , p e r c e p t i o n s of p a r e n t i n g s k i l l s o f m o t h e r s who a r e r e c e i v i n g s u p p o r t f r o m p a r e n t t r a i n i n g w o r k s h o p s can be c o m p a r e d t o t h o s e m o t h e r s who a r e n o r r e c e i v i n g s u c h s u p p o r t . REFERENCES A b i d i n , R. ( 1982 ). P a r e n t i n q s k i l l s . New Y o r k : Human S c i e n c e s P r e s s . A n d r o n , L., & S t u r m , M.L. ( 1 9 7 3 ) . 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U n i v e r s i t y o f C a l i f o r n i a : L o s A n g e l e s . Tymchuk, A., A n d r o n , L. & U n g e r , 0. ( 1 9 8 7 ) . P a r e n t s w i t h m e n t a l h a n d i c a p s and a d e q u a t e c h i l d c a r e - A r e v i e w . M e n t a l H a n d i c a p , 15, 49-54. U n i t e d N a t i o n s G e n e r a l A s s e m b l y . ( 1 9 8 8 ) . D e c l a r a t i o n on t h e  r i g h t s o f t h e m e n t a l l y r e t a r d e d . New Y o r k : U n i t e d N a t i o n s P u b l i c a t i o n s . V i t e l l o , S., & S o s k i n , R. ( 1 9 8 5 ). M e n t a l r e t a r d a t i o n - I t s s o c i a l a n d l e g a l c o n t e x t . New J e r s e y : P r e n t i c e H a l l . V o g e l , P. ( 1 9 8 7 ) . The r i g h t t o p a r e n t . E n t o u r a g e , 2 ( 1 ) . 33-39 . W a l d , M. ( 1 9 7 5 ) . S t a t e i n t e r v e n t i o n on b e h a l f o f " n e g l e c t e d c h i l d r e n " : A s e a r c h f o r r e a l i s t i c s t a n d a r d s . S t a n f o r d  Law R e v i e w , 27, 985-1040. W i c k e r , L., Wasow, M., & H a t f i e l d , E. ( 1 9 8 3 ) . S e e k i n g s t r e n g t h s i n f a m i l i e s o f d e v e 1 o p m e n t a l l y d i s a b l e d c h i l d r e n . S o c i a l Work, 2 8 ( 4 ) , 3 1 3 - 3 1 5 . W i n i k , L. ( 1 9 8 1 ) . The m i l d l y r e t a r d e d as p a r e n t s : A d e s c r i p t i o n o f t h e p r a c t i c e s o f two m i l d l y r e t a r d e d  c o u p l e s . U n p u b l i s h e d M a n u s c r i p t . U n p u b l i s h e d M a n u s c r i p t . U n i v e r s i t y o f C a l i f o r n i a , L o s A n g e l e s . W o l f e n s b e r g e r , W. (1984 ). A r e c o n c e p t u a l i z a t i o n o f n o r m a l i z a t i o n a s s o c i a l r o l e v a l o r i z a t i o n . C a n a d i a n  J o u r n a l o f M e n t a l R e t a r d a t i o n , 34.(2), 19 5-201. W o l f e n s b e r g e r , W. ( 1 9 7 6 ) . The o r i g i n a n d n a t u r e o f our i n s t i t u t i o n a l m o d e l . I n R.B. K u g e l & A. S h e a r e r ( E d s . ), C h a n g i n g p a t t e r n s i n r e s i d e n t i a l 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 ( p p . 7 8 - 9 1 ) . W a s h i n g t o n : D.C: P r e s i d e n t ' s C o m m i t t e e on M e n t a l R e t a r d a t i o n . 8 7 Z e t l i n , A., W e i s n e r , T., & G a l l i m o r e , R. ( 1 9 8 5 ) . D i v e r s i t y , s h a r e d and f u n c t i o n i n g : A s t u d y o f p a r e n t i n g by r e t a r d e d p e r s o n s . I n S.K. Thurman ( E d . ) , C h i l d r e n o f  h a n d i c a p p e d p a r e n t s : R e s e a r c h a n d c l i n i c a l p e r s p e c t i v e s ( p . 6 9 - 9 4 ) . B a l t i m o r e : A c a d e m i c P r e s s . 8 8 APPENDIX A PERSONAL PROFILE SHEET NAME AGE SEX DISABILITY/HANDICAP OF PARENT EDUCATION LEVEL OF PARENT i ) S e c o n d a r y S c h o o l i i ) E l e m e n t a r y S c h o o l - - - -i i i ) C o l l e g e i v ) O t h e r INCOME ( S o u r c e ) i ) W e l f a r e A s s i s t a n c e i i ) E m p l o y e d i i i ) O t h e r OTHER SUPPORT SERVICES i ) I n f a n t D e v e l o p m e n t W o r k e r i i)Homemaker i i i C o u n s e l l i n g i v ) P u b l i c H e a l t h N u r s e v ) S o c i a l W o r k e r v i ) L i f e S k i l l W o r k e r s NUMBER OF CHILDREN AGE S E X -S P E C I F I C HANDICAP OF CHILD D I S C I P L I N E 1. Do y o u t h i n k i t i s i m p o r t a n t t o d i s c i p l i n e y o u r c h i l d ? 2 . ( I f y e s ) How do y o u d i s c i p l i n e y o u r c h i l d ? 3. ( I f n o ) Why n o t ? 4 . I n what c i r c u m s t a n c e s do y o u f e e l i t i s i m p o r t a n t t o d i s c i p l i n e y o u r c h i l d ? NUTRITION l . I f I g a v e y o u t h e f o u r f o o d g r o u p s , I w o u l d l i k e y o u t o g i v e me a n ex a m p l e o f t h r e e f o o d s t h a t b e l o n g t o t h a t g r o u p . 2.What do t h i n k a r e g o o d e x a m p l e s o f n u t r i t i o u s f o o d s ? 3.What s o r t o f a m e a l w o u l d y o u c o n s i d e r t o be g o o d f o r y o u r c h i l d ? ( T h e y may g i v e a n e x a m p l e o f a c h i d l ) . 4 .What k i n d s o f f o o d s do y o u t h i n k a r e n o t g o o d f o r y o u r c h i l d ? b)Why n o t ? HOME SAFETY AND EMERGENCY 1. How do y o u make y o u r home s a f e f o r y o u r c h i l d ? 2 . I n y o u r home, what s t e p s w o u l d y o u t a k e f r o m p r e v e n t i n g y o u r c h i l d f r o m : i ) f a i l i n g f r o m t h e window i i ) s l i p p i n g on t h e k i t c h e n f l o o r 3. W h i c h h o u s e h o l d i t e m s w o u l d y o u c o n s i d e r t o be p o i s o n o u s ? 9 0 4. I f y o u r c h i l d h a s s o m e t h i n g p o i s o n o u s what w o u l d be t h e f i r s t t h i n g y o u w o u l d do? Who w o u l d y o u phone? 5 . I f y o u r c h i d l d o e s c h o k e , how w o u l d y o u s t o p h i m f r o m c h o k i n g ? Who w o u l d y o u phone r i g h t away? 7.At h e r / h i s a g e , what s o r t o f t o y s a r e n o t s a f e f o r y o u r c h i l d ? Why? INTERACTION AND SOCIAL STIMULATION 1.How do y o u show y o u r c h i l d t h a t y o u l o v e h e r / h i m ? i ) p h y s i c a l c o n t a c t ( h u g s e t c . ) i i ) V e r b a l e x p r e s s i o n s i i i ) O t h e r 2. When y o u r c h i l d d o e s s o m e t h i n g t h a t y o u a p p r o v e o f , how do you r e i n f o r c e h i m ? i ) v e r b a l p r a i s e i i ) g i v e t h e c h i l s s o m e t h i n g i i i ) h u g h i m i v ) d o n ' t know 3. When y o u r c h i l d d o e s s o m e t h i n g t h a t y o u d o n ' t a p p r o v e o f , how do y o u l e t h i m know? 4.How o f t e n do y o u c u d d l e y o u r c h i l d ? 5.Why do y o u t h i n k i t ' s i m p o r t a n t t o hug y o u r c h i l d ? 6.Do y o u m i x w i t h o t h r f a m i l i e s who have c h i l d r e n t hesame age a s y o u r s ? b ) I f n o t , why n o t ? 9 1 7.Do y o u f e e l i t ' s i m p o r t a n t t o e n c o u r a g e y o u r c h i l d t o m i x w i t h o t h e r c h i l d r e n ? 7b) Why o r Why n o t ? I DENTIFICATION AND ASSESSMENT OF SUPPORT SERVICES l . D i d y o u a t t e n d a n y p r e n a t a l c l a s s e s ? 2 . I f n o t , why n o t ? 3. ( I f y e s ) D i d y o u f i n d t h e s e c l a s s e s h e l p f u l ? I f n o t , why n o t ? 4.How l o n g h a v e y o u b e e n r e c e i v i n g s u p p o r t f r o m y o u r l o c a l a s s o c i a t i o n s ? 5.How h a s t h i s t y p e o f s u p p o r t h e l p e d y o u ? 6 .Wher w o u l d y o u go i f i t w e r e n ' t f o r t h e s u p p o r t t h a t y o u were r e c e i v i n g f r o m y o u r l o c a l a s s o c i a t i o n ? 7.How do y o u f e e l y o u w o u l d cope i f i t w e r e n ' t f o r t h e s u p p o r t t h a t y o u a r e g e t t i n g ? 8.Do y o u f e e l t h a t y o u a r e g e t t i n g e n o u g h h e l p f r o m y o u r a s s c o c i a t i o n ? 9 . I n what a r e a s do y o u f e e l t h a t y o u a r e g e t t i n g t h e most h e l p i n ? i )Time Management i i ) S h o p p i n g / M e n u P l a n n i n g i i i ) D u d g e t t i n g i v ) C h i l d D i s c i p l i n e v ) P r o v i d i n g a s o c i a l l y s t i m u l a t i n g e n v i r o n m e n t 1 0 . W h i c h o t h e r o r g a n i z a t i o n s a r e y o u r e c e i v i n g h e l p f r o m ? c! 2 11.Do y o u f r i e n d s o r f a m i l y t h a t come a n d h e l p y o u a t home? 1 2 . I f s o , how o f t e n do t h e y h e l p y o u a n d how do t h e y you? 

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