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Family differentials in the habilitation of children with a brain injury McCallum, Mary Freda 1961

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FAMILY DIFFERENTIALS IN THE HABILITATION OF CHILDREN WITH A BRAIN INJURY  by MARY FREDA McCALLUM  Thesis Submitted i n P a r t i a l F u l f i l m e n t o f t h e Requirements f o r t h e Degree o f MASTER OF SOCIAL WORK i n t h e S c h o o l o f S o c i a l Work  A c c e p t e d as c o n f o r m i n g t o t h e s t a n d a r d r e q u i r e d f o r t h e degree o f M a s t e r o f S o c i a l Work  S c h o o l o f S o c i a l Work  1961 The  University  of British  Columbia  In p r e s e n t i n g  t h i s t h e s i s i n p a r t i a l f u l f i l m e n t of  the r e q u i r e m e n t s f o r an advanced degree a t the  University  o f B r i t i s h C o l u m b i a , I agree t h a t the L i b r a r y s h a l l make it  freely  a v a i l a b l e f o r r e f e r e n c e and  agree t h a t p e r m i s s i o n f o r e x t e n s i v e f o r s c h o l a r l y purposes may  study.  I further  copying of t h i s  be g r a n t e d by the Head o f  Department o r by h i s r e p r e s e n t a t i v e s .  be a l l o w e d w i t h o u t my w r i t t e n  Department o f The U n i v e r s i t y of B r i t i s h Columbia, Vancouver $, Canada. Date  my  I t i s understood  t h a t c o p y i n g o r p u b l i c a t i o n of t h i s t h e s i s f o r g a i n s h a l l not  thesis  financial  permission.  iv  ABSTRACT Western society has advanced i n the provision of services for disabled children, but t h e i r complete acceptance and integration within the community has yet to be achieved. The development of i n t e r d i s c i p l i n a r y team programs for diagnosis and treatment, has nevertheless notably assisted t h i s process. S o c i a l workers have an important contribution to make i n t h i s area, but there i s s t i l l much to be done to standardize the information secured i n t h e i r interviews with parents. An i n i t i a l project i n t h i s d i r e c t i o n was carried out i n Vancouver l a s t year i n a speech and hearing c l i n i c . The present project explores adaptations of t h i s with the cerebral palsied c h i l d as representing one type of braininjury. Two basic dimensions i n the development of c r i t e r i a and r a t i n g scales are: 1 ) the health and socio-emotional circumstances of the c h i l d ; and 2) the family circumstances and home environment.  \  y  The present study i n i t i a l l y gives p a r t i c u l a r attent i o n to the l a t t e r , and considers some of the relationships between t h i s and assessments of the progress of the c h i l d i n functional a b i l i t y . Since only l i m i t e d sampling i s possible, measurement of the results i s not taken very f a r . There i s also evidence that t h i s i s primarily a middle income group. Case i l l u s t r a t i o n s and some comparisons of c r i t e r i a are used to supplement the conclusions. The qualitative c h a r a c t e r i s t i c s of the c r i t e r i a and t h e i r significance for diagnostic assessment i s subjected to careful view. In the present context they are considered i n terms of the interrelatedness of c u l t u r e , values, role and stress. The brain-injured c h i l d may have a r e l a t i v e l y mild or severe c o n d i t i o n . While treatment may be complex, object i v i t y i s essential i n assessing h a b i l i t a t i o n p o t e n t i a l . D i f f e r e n t i a l s i n family functioning as they pertain to parental r e l a t i o n s h i p s , emotional acceptance, understanding, and cooperat i o n are highly relevant to effective remedial or educational procedures, or casework. Indeed, the assessment of environmental circumstances i n terms of s o c i a l functioning may further the eventual integration of the disabled c h i l d into the community. It i s reasonable to anticipate r e s u l t s from continued research of the present kind.  V  ACKNOWLEDGEMENTS  I am singularly grateful to Miss Eleanor J. Bradley, Supervisor, Child Health Programme, University of B . C . , whose sustaining guidance has made t h i s thesis a reality. Its d i r e c t i o n and purpose was maintained through the invaluable assistance of Dr. Leonard Marsh, Director of Research, School of Social Work, University of B.C. Throughout the project, the interest shown by Dr. W.M. Gibson, Assistant Medical Director, G.F. Strong Rehabilitation Centre, has been a source of encouragement. The study of human relationships would not be possible without access t o records. For t h i s I am respectfully indebted to Dr. A . C . Pinkerton, Medical Director of the G.F. Strong Rehabilitation Centre and the Cerebral Palsy Association, and a d d i t i o n a l l y , to the families represented. I wish to acknowledge further the patience, and congenial response of the Cerebral Palsy Association personnel. Their cooperation i s sincerely appreciated.  ii TABLE OF CONTENTS  Chapter 1.  The Disabled Child and His Family  Page  Human needs of a l l c h i l d r e n . Family differentials. The development process. Physiological differentials. The c l i n i c a l team. Setting of the study. Purpose, methods, and l i m i t a t i o n s Chapter 2.  Family D i f f e r e n t i a l s  1.  - A Preliminary Analysis  D i f f e r e n t i a l s of socio-economic status. D i f f e r e n t i a l s of family strengths. The c h i l d ' s progress i n physical function. Relationship of progress to physical and emotional environment Chapter 3.  24.  A Framework to Assess Levels of Social Functioning  P h y s i o l o g i c a l , emotional, and s o c i a l adapt a t i o n of the c h i l d . Physiological, socio-economic, and s o c i o - c u l t u r a l adaptation of the family. A proposed revision of the schedule. Rating methods Chapter 4.  The Social Work Contribution i n a C l i n i c a l  3&. Setting  Psychosocial diagnostic assessment and casework with the family. Agency and community r e s p o n s i b i l i t i e s . Future research Appendices: A. B. C. D.  Two Schedules from a thesis by R. Varwig. A Medical Assessment Schedule. The Two Schedules Revised. Bibliography.  56.  iii  TABLES IN THE TEXT  Page Table 1 .  Ratings of Family D i f f e r e n t i a l s Brain-injured Child  Table 2.  Comparative Family Scores for Two I l l u s t r a t i v e Cases  29.  Observed Progress i n Functional A b i l i t y Over a Two Year Period  32.  Relative Progress i n Functional A b i l i t y Over a Two Year Period  32.  Table 3.  Table 4.  Table 5.  of the  Comparative Ratings of Family Scores and Functional Progress of the Child  26  34-  vi  FAMILY DIFFERENTIALS IN THE HALT LITATION OF CHILDREN WITH A BRAIN INJURY  CHAPTER I THE DISABLED CHILD AND HIS FAMILY Centuries ago,  " c i v i l i z e d man" regarded physical de-  formity i n a human with fear and s u p e r s t i t i o n .  These prevailing  attitudes demanded treatment i n the form of punishment, avoidance, or complete physical r e j e c t i o n . differently,  Although C h r i s t i a n i t y taught  and although the b e l i e f i n the inherent worth and  dignity of man i s based on t h i s Hebraic heritage, modern man has only within r e l a t i v e l y recent decades made a conscious to overcome the vestiges of such attitudes.  attempt  The "study of man  as a s o c i a l being may be traced back to the philosophical speculations of the early G r e e k s . . . " ; 1 but the "study of man" needs s t i l l to develop an understanding of man as a s o c i a l being.  It  i s easy to think, write, or speak about i n d i v i d u a l s within categories of "the handicapped." respect them simply as  It i s not so easy to accept and  people.  Human Needs of a l l Children A l l children need to belong, to be part of a family, to be part of a community and of society. l o g i c a l needs which must be s a t i s f i e d  They have basic bio-  i n order t o e x i s t .  Also,  Simmons, Leo W., and Wolff, Harold G . , Social Science i n Medicine. Russell Sage Foundation, New York, 1954, p. 27.  2  most authorities agree that the c h i l d needs love, security, and s p i r i t u a l nourishment i n order t o develop a healthy personality. Yet dependent on p h y s i o l o g i c a l , psychological and s o c i o - c u l t u r a l factors,  the emphasis on the c h i l d ' s obvious needs for food,  clothing, shelter,  learning and play opportunities w i l l vary.  Thus a particular c h i l d of a p a r t i c u l a r age, and s i m i l a r l y , the c h i l d with a d i s a b i l i t y , w i l l have needs d i f f e r i n g from those of any other.  For example, the hearing-handicapped c h i l d and the  brain-injured c h i l d have the same basic needs, but t h e i r d i s a b i l i t i e s represent  i n d i v i d u a l i z e d need which w i l l be further  affected by t h e i r age and personality Nevertheless,  characteristics.  the c h i l d who appears p h y s i c a l l y or  mentally " d i f f e r e n t " from the majority i s more frequently regarded as an i n d i v i d u a l with a d i s a b i l i t y than as an i n d i v i d u a l c h i l d with thoughts, feelings,  and often an inherent potential  capacity as s i g n i f i c a n t as that of any other c h i l d .  Disabled  children have no desire to be considered " d i f f e r e n t " and thus to be set apart.  It i s society that sets them apart.  While many organizations and programs have been developed i n the interest  of such children with intent to  t h e i r optimum functioning, the remnants of f e a r ,  ensure  superstition,  and revulsion have been sublimated i n overprotection and segregation.  Such attitudes are as c h a r a c t e r i s t i c  are of the community and s o c i e t y . of society,  of parents as they  As the primary nurturing units  a l l families within the community must assume the  fundamental r e s p o n s i b i l i t y for assuring the integration of the disabled c h i l d .  The "family d i f f e r e n t i a l s " which underlie  3 such r e s p o n s i b i l i t y constitute the framework of the present study. Family  Differentials Parents as w e l l as c h i l d r e n have d i f f e r i n g needs which  affect t h e i r interpersonal r e l a t i o n s h i p s .  Parental management  of a c h i l d w i l l therefore vary correspondingly i n i n d i v i d u a l respects.  Moreover, " . . . t h e parent-child r e l a t i o n s h i p  develops  and changes with the changes and needs of the growing c h i l d . " 1 Whatever action a person takes i n a given s i t u a t i o n however,  is  pre-determined by his inherent genetic and psychic capacity, by his perception of his r o l e i n that p a r t i c u l a r s i t u a t i o n , his singular value-system and c u l t u r a l "Role" for the s o c i o l o g i s t  and by  setting.  refers to "the organization  of habits and attitudes of the i n d i v i d u a l appropriate to a given position i n a system of s o c i a l r e l a t i o n s h i p s . " 2  Values refer to  the "system of ideas, a t t i t u d e s , and b e l i e f s which consciously and unconsciously bind together the members of a family i n a common culture."3 the geographic,  In i t s broadest sense, " c u l t u r e " refers to  economic, or n a t i o n a l i s t i c pattern or patterns  of r e l a t i o n s h i p s ,  attitudes or experiences  sustained by an  • •'•Little, Sherman, " S o c i a l and Emotional Handicaps of C h i l d r e n , " Pediatric C l i n i c s of North America; Symposium on Handicaps and Their Prevention, ed. C C . Fischer, W.B. Saunders C o . , P h i l a d e l phia and London, August 1957, p. 734. Neiman, L . J . , and Hughes, J.W., "The Problem of the Concept of R o l e , " S o c i a l Perspectives on Behavior, ed. H.D. Stein and R.A. Cloward, The Free Press, Glencoe, 1958, p. 17&\ 2  ^Parad, H . J . , and Caplan, G. "A Framework for Studying Families i n C r i s i s , " Social Work.(July 1960| p. 6.  4 individual.1  This then includes c u l t u r a l "groups" such as  Americans, Indians, and Chinese, as well as c u l t u r a l "sub-groups" such as upper and lower "socio-economic" c l a s s . It becomes obvious that r o l e s ,  values and culture are  i n t r i c a t e l y interwoven i n every i n d i v i d u a l ' s l i f e pattern, and consequently affect family r e l a t i o n s h i p s .  For example,  the  roles of a middle-class American banker as the breadwinner, and father of two c h i l d r e n , w i l l carry different  responsibilities  and values than those of a Swedish immigrant farmer who i s also father of two c h i l d r e n , and the breadwinner of the family. S i m i l a r l y , the mother's roles w i l l vary according t o the c u l t u r a l pattern.  These nevertheless  are not always well-defined; and  changing c u l t u r a l patterns and conditions frequently introduce uncertainties,  confusion, or c o n f l i c t i n the parents' perception  or understanding of t h e i r respective  roles.  Anthropologists such as Malinowski have pointed out that " . . . i n t e r - p e r s o n a l c o n f l i c t s and stresses associated with parent-child relationships depend l a r g e l y upon the kinds of pressures imposed upon the i n d i v i d u a l by the s o c i a l  structure  and the family configuration, and . . . these may vary greatly from culture to c u l t u r e . " 2  Pathology induced by a s t r e s s f u l  situation may be traceable to environmental conditions such as  "hftfitrner, H . L . , and Kotinsky, R., e d . , Personality i n the Making, The Fact-Finding Report of the Midcentury" White House Conference on Children and Youth, Harper and Brothers, New York, 1952, p. 165. 2  Simmons, and Wolff, op. c i t . . p. 42.  5  overcrowded housing; to s o c i a l conditions such as unemployment; or to differences  i n sub-cultural group values.  Studies have shown for example that values attached to the i n d i v i d u a l ' s basic needs for food, s h e l t e r ,  sleep, l i g h t ,  heat, and defense d i f f e r widely f o r each socio-economic c l a s s , and i n addition r e f l e c t learning a b i l i t y . 1  considerable influence on a c h i l d ' s  For the lower classes, fear of  starvation  i s a strong motivation to over-eat at i r r e g u l a r times. Additionally, The conception that aggression and h o s t i l i t y are neurotic or maladaptive symptoms of a c h r o n i c a l l y frustrated adolescent i s an ethnocentric view of middle-class p s y c h i a t r i s t ( s ) . In lower-class families, physical aggression i s as normal, s o c i a l l y approved and s o c i a l l y inculcated type of behavior as i t i s i n f r o n t i e r communities. 2 Superiority i n i n t e l l i g e n c e of children from the higher occupational groups was found i n ten standard  intelli-  gence tests to be associated with the vocabulary used, and the greater motivation on the part of the higher occupational  groups.  When one controls the socio-economic c u l t u r a l factors i n a t e s t , therefore, one finds sound s t a t i s t i c a l evidence that the average r e a l i n t e l l e c t u a l a b i l i t y i s i n general at the same l e v e l for a l l socio-economic groups. 3 For many parents already under psychological,  social,  D a v i s , A l l i s o n , "Socio-Economie Influences Upon C h i l d r e n ' s Learning," Paper delivered at the Midcentury White House Conference on Children and Youth, Washington, D . C , 1 9 5 0 , (mimeographed). x  2  I b i d . , p. 4.  3  I b i d . . p. 6.  6 or economic stress, the presence of an abnormal c h i l d i n the home may p r e c i p i t a t e an emotional or marital problem, or behavioural d i f f i c u l t i e s  i n the other c h i l d r e n .  In many cases,  the c h i l d himself w i l l precipitate the stress, yet the degree of pathology i s often increased because of other factors i n the t o t a l family s i t u a t i o n . A l l families experience stress to a certain extent. Many are able t o adapt to these situations with l i t t l e culty.  diffi-  Prevention of i n t e n s i f i e d emotional stress involves  knowledge of the degree of e x i s t i n g stress and the modes of adaptation.  Prolonged uncertainty of diagnosis or prognosis  of a c h i l d ' s condition tends to heighten anxieties and increase tensions i n the home.  By contrast,  any s i t u a t i o n becomes more  manageable once the known replaces the unknown.  Parents may be  saved t h i s type of emotional stress i f they are able to obtain an early diagnosis of t h e i r c h i l d ' s d i s a b i l i t y .  The parent of  a handicapped c h i l d adds: We need to look more closely f o r ways to prevent emotional breakdown within these f a m i l i e s . A much better evaluation of parents, themselves, i n the i n i t i a l stages of counselling, seems i n d i c a t e d . . . . H e r e we are delving into preventive s o c i a l work....We need to educate the public that s o c i a l workers don't work exclusively with the p o o r . . . . A n y family can have a problem too b i g for them, and often parents need help i n gaining insight to preserve or improve t h e i r mental health.1 The Development Process Current theories on the development of personality  ^Patterson, L . L . , "The Role of the Parent," The Child with a Handicap, ed. E . E . Martmer, C C . Thomas, S p r i n g f i e l d , 1959, p. 18-19.'  7  substantiate the opinion that parental responses and attitudes are the primary environmental influence on the c h i l d ' s early development.  The mother-child relationship i s emphasized as  being p a r t i c u l a r l y s i g n i f i c a n t  i n that the infant i s nurtured  by, and i s primarily dependent on i t s mother. tates nourishment.  Growth necessi-  Healthy emotional growth necessitates healthy  emotional nourishment.  A warm, l o v i n g , and responsive  ship with the mother during the c h i l d ' s f i r s t  relation-  year i s the emotion-  a l nourishment that lays the basis f o r the f i r s t  stage of the  c h i l d ' s ego development; namely, that of " t r u s t . " 1 As the c h i l d grows, his sense of trust i n himself and i n h i s ever widening environment w i l l expand.  I l l n e s s or disa-  b i l i t y i s a threat to t h i s sense of t r u s t , which may be temporary, or conceivably, of l i f e - l o n g duration. As the c h i l d develops,  the c o n f l i c t between dependency  and his need for love on the one hand, and increasing parental demands for conformity to s o c i a l and c u l t u r a l standards on the other, often r e s u l t s i n anxiety.  Nonconformity may i n c i t e anger  on the part of the parent about which the c h i l d may experience feelings  of g u i l t , or which he might interpret as being a with-  drawal of love.  This plays a s i g n i f i c a n t  part i n the c h i l d ' s  learning process i n accepting himself as a worthy i n d i v i d u a l .  It  i s during t h i s period,referred to as the stage of "autonomy," 2  ^Erikson, E . H . , Childhood and Society. W.W. Norton and Co. I n c . , New York, 1950, p. 219. 2  I b i d . , p. 222.  8  that the normal c h i l d ' s neuromuscular s k i l l s develop, increasing his capacity for physical independence and s e l f - r e l i a n c e .  It  is  thus reasonable to expect that the disabled c h i l d ' s possible feelings of rejection and non-acceptance might be i n t e n s i f i e d . His anxieties and fears therefore need to be understood and allayed.  Every c h i l d at t h i s age needs parents who can not only  allow him a degree of independence, but who can i n certain s i t u ations encourage his independence, while setting reasonable and consistent l i m i t s within a warm and loving r e l a t i o n s h i p . From three and a h a l f years of age to f i v e or six, c h i l d becomes more creative and imaginative.  the  During t h i s period  he begins to learn habits and s o c i a l roles by an i d e n t i f i c a t i o n with the parent of the same sex.  Here too, the normal c h i l d ' s  developing sense of "initiative"" 1 " i s characterized by competition as he explores and finds opportunities t o play with others his age.  This again underlines the abnormal s i t u a t i o n the disabled  c h i l d w i l l encounter unless he has the opportunity to participate i n play a c t i v i t i e s with h i s peers.  Where t h i s becomes over-  whelming to the c h i l d l e s s apt i n movement and expression than the normal c h i l d , he may develop a self-image of a weak and incapable being.  He may then tend to withdraw, and become more  dependent rather than incur f a i l u r e by competing.  Such a c h i l d  needs encouragement to experiment and learn tasks equal to h i s capacity.  I b i d . , p. 224.  9 Conversely, the c h i l d may f e e l h i s l i m i t a t i o n s excuse him from assuming r e s p o n s i b i l i t y . 1  This i s frequently an a t t i -  tude encouraged by over-protecting parents,  but prolonging the  c h i l d ' s dependency i n t h i s way only tends to s t u l t i f y the healthy growth of the ego.  Overindulgence then, i s equally as detrimen-  t a l to the c h i l d ' s normal personality development as i s  neglect  or r e j e c t i o n . In order t o develop as a s o c i a l being, the c h i l d has to learn the lessons of obedience, conformity, and recognition of the rights of others.  He nevertheless needs to learn these  within an atmosphere of love and understanding.  Such an atmos-  phere i s provided i n the "democratic" home where authority i s expressed with a f f e c t i o n ,  consistency, and r a t i o n a l i t y .  Considerable research has been carried out i n recent years to test the influence of parental attitudes on the c h i l d ' s personality development. 2 Institute,  Under the auspices of the Fels Research  Baldwin et a l designed a r a t i n g technique for c o l l e c t -  ing information about the home environment on the basis of home visits.3  The p r o f i l e s contain t h i r t y variables within the  following eight broad categories:  Iwitmer, and Kotinsky, op. c i t . . p.  66.  F r a n k i e l , Rita V . , A Review of Research on Parent on Child Personality, F . S . A . A . , 1959. 2  Influences  ^Baldwin, A . L . , Kalhorn, J . , and Breese, F . H . , "The Appraisal of Parent Behavior," Psychological Monographs, v. 63 (1949), No. 4 (Whole No. 299)-  10 1. 2. 3. 4. 5. 6. 7. &.  Home atmosphere Contact of c h i l d and mother Control and influence of parent on c h i l d Babying and protectiveness C r i t i c i s m and evaluation of c h i l d Readiness of explanation Emotional relationships between parent and c h i l d Miscellaneous: these include understanding, emotionality, affectionateness, and rapport. Research based on t h i s device found three key  as representative  "clusters"  of dimensions of parent behaviour; namely,  warmth, o b j e c t i v i t y and parental c o n t r o l . lated t o two patterns:  O b j e c t i v i t y i s re-  indulgence, and democracy which i s  characterized by j u s t i f i c a t i o n ,  explanation and a b i l i t y to meet  the c h i l d at h i s own l e v e l . 1 A further study concluded that c h i l d r e n experiencing a democratic atmosphere rate higher on s o c i a l l y outgoing behaviour, as well as on a c t i v i t y demanding i n t e l l i g e n c e , o r i g i n a l i t y and constructiveness.  Those experiencing indulgence  were found to exhibit physical apprehensiveness i n muscular  curiosity,  and lack of s k i l l  activities.  Meng, Schilder, Bender, and others have studied the influence of d i s a b i l i t y on behaviour and personality development.-^  Most theories developed are as yet speculative,  although  ^ F r a n k i e l , op. c i t . , p. 19-20. Baldwin, A . L . , "The Effect of Home Environment on Nursery School Behavior," Child Development. V. 20, ( 1 9 4 9 ) , p. 5 7 . 2  ^Barker, Roger G . , Wright, B . A . , and Gonick, M.R., Adjustment to Physical Handicap and I l l n e s s ; A Survey of the S o c i a l Psychology of Physique and D i s a b i l i t y , Social Science Research Council, New York, 1953 (copyright 1 9 4 6 ) .  11 they o f f e r some i n s i g h t i n t o the problems, and p o i n t c e r t a i n t y t o the f a c t t h a t mechanisms a r e i n v o l v e d . "  with  "both s i t u a t i o n a l and p e r s o n a l i t y Environmental s t r e s s may vary from  1  s i t u a t i o n t o s i t u a t i o n , but a d a p t a t i o n t o such s t r e s s i s dependent on the l e v e l o f ego m a t u r i t y o f t h e c h i l d o r p a r e n t s . A c c o r d i n g t o Meng, "even t h e most s e r i o u s does not n e c e s s a r i l y r e s u l t i n a d i s t o r t e d  physical  disability  personality."  2  Physiological Differentials Because o f t h e c o m p l e x i t y o f the c o n d i t i o n , injured c h i l d exemplifies  the p h i l o s o p h y t h a t i t i s not the  handicap, but t h e c h i l d which should r e c e i v e f i r s t when c o n s i d e r i n g  the brain-  importance  " h a b i l i t a t i o n . " A b r a i n - i n j u r e d c h i l d i s one  "who b e f o r e , d u r i n g ,  o r a f t e r b i r t h has r e c e i v e d  s u f f e r e d an i n f e c t i o n o f t h e b r a i n . "  3  an i n j u r y t o o r  As t h e c o n d i t i o n  exists  e i t h e r a t b i r t h o r p r i o r t o t h e f u l l development o f t h e nervous system, t h e term " h a b i l i t a t i o n " here connotes f a c i l i t a t i o n o f a c h i l d ' s inherent as i s g e n e r a l l y  p o t e n t i a l , r a t h e r than r e s t o r a t i o n o f f u n c t i o n i m p l i c i t i n t h e term " r e h a b i l i t a t i o n . "  B r a i n - i n j u r y i s o f t e n i n c o r r e c t l y equated e x c l u s i v e l y w i t h mental impairment.  On t h e other hand, c h i l d r e n w i t h apparent  emotional and b e h a v i o u r a l d i s o r d e r s may have an unrecognized  -'-Ibid., p. 93. 2  I b i d . , p. 86.  S t r a u s s , A.A., and Lehtinen, L.E., Psychopathology and E d u c a t i o n o f t h e B r a i n - I n j u r e d C h i l d , Grune and S t r a t t o n , New York, 1956 ( c o p y r i g h t 1947), p. 4. 3  12 brain-injury when the primary impairment i s i n the area of perception.  While the major defect may be either of the above,  it  may a l t e r n a t i v e l y involve primarily a neuromotor d i s a b i l i t y , commonly termed cerebral palsy.  Defects associated with t h i s  may include heart disease; conditions affecting speech;  diffi-  c u l t i e s i n auditory, v i s u a l , and t a c t u a l perception; or convulsive  disorders. The subjects of t h i s study are primarily brain-injured  children with cerebral palsy; thus a b r i e f discussion of the causes and c l a s s i f i c a t i o n  of the d i s a b i l i t y i s indicated.  As  evident i n the l i t e r a t u r e , the data on cerebral palsy are extremely involved, and there i s today no common agreement as to etiology, c l a s s i f i c a t i o n  or treatment.  Moreover, there i s i n -  creasing concern that "unless development i s taken into account, very few conclusions i n the l i t e r a t u r e are v a l i d . " 1  What i s  s i g n i f i c a n t i s that " . . . g r o w t h and development may be disturbed i n many ways.  These...may be l a r g e l y physiological or i n t e l l e c -  t u a l , or due to unsuccessful  management."2  Today, the American Academy of Cerebral Palsy defines cerebral palsy as any abnormal a l t e r a t i o n of movement or motor function a r i s i n g from defect, injury or diseases of the nervous tissues contained within the c r a n i a l v a u l t . Such a condition may occur before, during, or after b i r t h . 3  Crothers, Bronson, and Paine, R . S . , The Natural History of Cerebral Palsy, Harvard University Press, Cambridge, 1959, p. 11. 2  I b i d . , p. 6  Denhoff, E r i c , "The Child with Cerebral P a l s y , " The Child with a Handicap, ed. E . E . Martmer, C C . Thomas, S p r i n g f i e l d , 1959, p. 128. 3  1  3  The neuromotor d i s a b i l i t y may be characterized by . . . s p a s t i c i t y , weakness, incoordination, r i g i d i t y , tremors or involuntary motions, alone or i n mixed varieties. Dysfunction may be l i m i t e d to a single limb or may involve the entire body. Dysfunction may vary i n degree of severity and may change from . time to time i n relationship to the growth and development of the damaged nervous system. 1 The causes of cerebral palsy are complicated and frequently m u l t i p l e .  A sample of the respective  etiological  factors are l i s t e d within four broad categories or groupings: Genetic: including maternal c o n s t i t u t i o n a l  factors.  Prenatal: i n f e c t i o n s , i r r a d i a t i o n , maternal metabolic disorders. Paranatal: vascular i n j u r y , anoxia, trauma, prematurity, postmaturity. Postnatal: encephalitis, pneumonia, kernicterus due to RH i n c o m p a t i b i l i t y . It i s estimated that twenty to forty percent of the cases are of unknown cause. Perhaps the most commonly used terms t y p i f y i n g the condition are s p a s t i c i t y ,  r i g i d i t y , tremor, athetosis, and ataxia.  The spastic group may also be c l a s s i f i e d i n r e l a t i o n to the limbs affected. Studies of i n t e l l e c t u a l factors are d i f f i c u l t to validate due to the u n r e l i a b i l i t y of standardized t e s t s , however enough evidence has been accumulated to suggest that the incidence  """Ibid. 2  I b i d . , p. 130.  14 of mental deficiency i s much higher than i n the general population.1 Thus, . . . t h e r e i s no c h a r a c t e r i s t i c course...and above a l l , the accurate description of the motor patterns may not give any insight into other important elements, such as i n t e l l e c t u a l and emotional difficulties.2 More cerebral palsied children than normal children have hyperkinesis which i s characterized by l o s s of emotional c o n t r o l , h y p e r a c t i v i t y , impulsiveness, poor attention span, d i s t r a c t i b i l i t y , l i s t l e s s n e s s and i r r i t a b i l i t y . . . . B e h a v i o r problems i n children evidencing cerebral palsy are related both to organic factors and environmental c o n f l i c t s with family and society.3 While cerebral palsy f a l l s within the  classification  of " b r a i n - i n j u r y , " i t also comes within the group of neuromuscular diseases which include p o l i o m y e l i t i s and the muscular dystrophies.  However different t h e i r prognosis,  they a l l  "result  i n a disturbance of the neuromuscular apparatus which controls normal movement."^  This emphasizes that i r r e s p e c t i v e of the  area of c l a s s i f i c a t i o n ,  and however different  the diagnosis,  they a l l result i n a s t r e s s f u l s i t u a t i o n for the c h i l d and h i s family.  Viewed within h i s c u l t u r a l environment, and dependent  x  C r o t h e r s , op. c i t . . p. 172.  2  I b i d . . p. 34.  3  Denhoff, op. c i t . . p. 137-  ^Tobis, Jerome S., "The Child with Neuromuscular Disease," Management of the Handicapped C h i l d , ed. H. Michael-Smith, Grune and Stratton, New York, 1957, p. 192.  15 on the severity of the " d i s a b i l i t y " then, the "handicap" i t w i l l t y p i f y for the c h i l d may be more s o c i a l than p h y s i c a l , more emotional than i n t e l l e c t u a l . The C l i n i c a l Team With increasing knowledge i n the psycho-social aspects of personality development, the concept of the "whole" c h i l d t o day concerns not only his physical problem and what can be done for i t , but what can be done to enhance his and his family's socio-emotional environment.  This has given impetus within  c l i n i c a l settings p a r t i c u l a r l y to the " i n t e r d i s c i p l i n a r y team" approach i n the management of the c h i l d with one or more d i s abling conditions. No one professional person has the s k i l l s to evaluate adequately the health needs of most handicapped c h i l d r e n . Teams, . . . t o be effective...must be variously constituted for each c h i l d ; they need not be formally and self-consciously organized; they must be capable., of deleting or adding members as the needs demand. Team orientation within a c l i n i c a l setting moreover not only demands a dynamic and progressive  program, but requires r e c i p -  r o c a l recognition and respect for each d i s c i p l i n e ' s  specialized  t r a i n i n g and c u l t u r a l l y determined roles and values. The i n c l u s i o n of the parent on the team i s being suggested more and more by parents and professional people a l i k e . Parents are faced with a phenomenal task i n recognizing, accept-  M i l l e r , C . A . , "Health Needs of Children with Multiple Handicaps," Prevention.and Management of Handicapping Conditions i n Infancy and Childhood, Institute sponsored by the University of Michigan School of Public Health, November, 1959, p. 67. x  16  i n g , understanding, t r e a t i n g , and i n t e r p r e t i n g t h e i r problem. For them i t i s largely a matter of emotional adjustment  or  adaptation which cannot be completely understood by others unl e s s experienced.  Their p a r t i c i p a t i o n i n the treatment plan  therefore i s dependent not only on economic resources,  but on  t h e i r attitudes toward the d i s a b i l i t y which include the f a t h e r ' s sympathetic and cooperative response, and the mother's emotional response to the developing personality of the  child.  The d i f f i c u l t y of the parents often i s not the physical d i f f i c u l t y at a l l but any one of the apparently t r i v i a l complications which are i n e v i t able when distortions of growth and developmentinterfere with adjustment at home or i n school. Professional people therefore must be prepared t o accept, and adjust to these problems as w e l l as to t h e i r own respective  roles  i n r e l a t i o n to the patient, his family, and the team i n t e r a c t i o n , i n order t o demonstrate a cooperative and integrated approach toward a common goal. In the management of the disabled c h i l d , the concept of "prevention" i s gaining wider recognition i n both the medical and s o c i a l work professions.  This has i m p l i c a t i o n , p a r t i c u l a r l y  i n reference to early diagnosis of a d i s a b l i n g condition, from the aspect of prevention of s o c i a l or emotional breakdown withi n families;  and of prevention of pathology i n the c h i l d ' s  physical and emotional development.  Crothers, op. c i t . , p. 29.  In s o c i a l work, the t h i r d  17  stage or " t e r t i a r y " 1 prevention may be conceived as the h a b i l i t a t i v e aspect.  This i s envisaged by offering help to people i n  the use of t h e i r inherent strength of character, or community resources,  and t h e i r s o c i a l  thus f a c i l i t a t i n g adaptation i n face of  stress. Setting of the Study The present study pertains to the treatment program of the Cerebral Palsy Association of Greater Vancouver.  This  i s a voluntary health agency o r i g i n a l l y founded by a group of parents who had become aware of deficiencies i n the being provided for t h e i r children.  services  The agency i s supported by  private and public funds, with offices  and f a c i l i t i e s  located  within the G.F. Strong Rehabilitation Centre. The program constitutes non-residential treatment facilities  and services for children with cerebral palsy, and  for a l i m i t e d number of children with other disabling conditions such as p o l i o m y e l i t i s , traumatic brain i n j u r y , and muscular dystrophy.  There are no f i n a n c i a l e l i g i b i l i t y requirements for  those with cerebral palsy, and r e f e r r a l s  of children of any age  are accepted from within or without the Province of B r i t i s h Columbia on the recommendation of a medical p r a c t i t i o n e r . Parenthetically, i t may be noted that within the province, services for children with cerebral palsy are offered at the  Beck, Bertram M . , Prevention and Treatment, based on the work of a Subcommittee, NASW National Commission on S o c i a l Work Practice (mimeographed), p. 8-9.  18 Children's Hospital i n Vancouver; at the Health Centre for Children, Vancouver General Hospital; at the Royal Jubilee Hospital, V i c t o r i a ; and a new program i s currently being developed i n Surrey. The medical personnel appointed to implement the program of the Cerebral Palsy Association of Greater Vancouver include two p h y s i a t r i s t s and a p e d i a t r i c i a n .  Neurological,  orthopedic, p s y c h i a t r i c , audiometric, orthoptic, dental, and psychological services are arranged on a consultative  basis.  S i m i l a r l y , the services of the public health nurse are provided through the Metropolitan Health Committee. Other personnel comprise the professional of s o c i a l work, physiotherapy, occupational therapy, auditory therapy, and brace-making.  disciplines speech and  Volunteers, and two s t a f f  aides a s s i s t i n a l l departments. In addition to the above, there i s accommodation and staffing for a pre-school enrollment of t h i r t y - f i v e children; and an academic school enrollment of t h i r t y , grades one to inclusive.  six  The l a t t e r i s a special service provided by the  Vancouver School Board.  Exclusive of these, an average of  approximately f i f t y children attend monthly at various  frequen-  cies for therapy only. To enable the children to attend on a regular basis, transportation  i s provided by one staff d r i v e r , and supplemented  by drivers employed by the B.C. Crippled Children's Society. To date, the s o c i a l worker has made a l i m i t e d c o n t r i -  19 bution i n the assessment of the c h i l d and family i n terms of s o c i a l functioning.  S p e c i f i c a l l y , t h i s professional r o l e i n -  volves d i r e c t contact with parents, as well as l i a i s o n with the c l i n i c s t a f f and the community.  I n i t i a l l y i n cooperation with  the doctor, the s o c i a l worker prepares the parents for the c h i l d ' s therapeutic assessment, and explains the scope of the program.  In certain cases the s o c i a l worker may be further  requested to interpret the nature of the c h i l d ' s problem to the parents and give them support i n h i s management.  This may re-  quire casework service on a short term or continuing basis i n order to help these families reach a r e a l i s t i c  understanding  of the c h i l d ' s d i s a b i l i t y , and plan for h i s future accordingly. On the basis of home and office v i s i t s ,  the s o c i a l  worker provides information to the other team members concerning the family circumstances.  Information i s also exchanged i n both  formal and informal team discussions with regard to the family's and c h i l d ' s attitudes to treatment and t o the d i s a b i l i t y . As l i a i s o n between the family and the community, the s o c i a l worker interprets the nature, of the problem to teachers, administrators,  nurses,  extent, and implications doctors,  s o c i a l workers,  and other agency personnel i n the community who  are involved with the family. Purpose of the Study In s o c i a l work p r a c t i c e , f a c t - f i n d i n g i s a fundamental prerequisite to diagnostic assessment and treatment.  Some re-  search has already been undertaken within c l i n i c a l settings i n  20  an endeavour to e l i c i t , c l a r i f y , and record the facts p e r t i nent to the case study.  A tentative design was conceived for  example i n a l o c a l study of the hearing-handicapped  child.1  The design consisted of two r a t i n g schedules, the c h i l d , and one for the family.  one f o r  In addition, the study  evaluated the c h i l d ' s response to treatment P r o f i t i n g from the Varwig project,  (see Appendix A ) . the present  explora-  tory study proposes to determine: a. to what extent data about the c h i l d with cerebral palsy have been sought i n the strategic areas set out i n the Varwig schedules,  and how the information has been recorded.  The  study further proposes thereby to explore the relationship between the c h i l d ' s physical and emotional environment, and his progress i n functional capacity. b. what s p e c i f i c  additional or modified information i s  necessary t o assess the s o c i a l functioning of the t o t a l family when the problem centres on the management of the c h i l d with brain-injury known as cerebral palsy. c. how far methods for compiling data can and should be  systematized. d. how the data might then be used i n making a diag-  nostic assessment on which to structure the medical-social treatment plan. It i s clear that good recording methods contribute not  Varwig, Renate, Family Contributions i n Pre-school Treatment of the Hearing-Handicapped C h i l d , Master of Social Work t h e s i s , University of B r i t i s h Columbia, I 9 6 0 .  21  only toward the understanding of intra-faraily but also to further s c i e n t i f i c research.  relationships,  It follows that a r a -  t i n g technique may eventually be developed from  systematically  compiled material, and subsequently standardized as a predictive instrument i n evaluation of the casework process. Method Data for the study were obtained from the medical and s o c i a l case records, then supplemented by s t a f f  interviews.  Forty-one case records of c h i l d r e n between the ages of four and s i x were reviewed.  From these, twenty-five children were selec-  ted as having reached the age of four by January, 1954, terminated t h e i r sixth year i n December, 1956.  or having  Each c h i l d was  known to the agency f o r a period of not less than twenty-four months, and was l i v i n g at home with both parents within the Greater Vancouver area.  The s i m i l a r i t y of type, or frequency of  treatment were not regarded as necessary determinants i n the sel e c t i o n of cases. The c r i t e r i a set out i n the two Varwig schedules were reviewed, however, only the family schedule was used i n compiling the data for tabulation i n t h i s study.  In recognition of the  perceptual problems of the brain-injured c h i l d , r a t i n g of the children on the data as outlined was not considered p r a c t i c a l . The twenty-five families were subsequently rated therefore on the l i n e s of one set of the Varwig c r i t e r i a (see 2, Appendix A).  Schedule  In addition, the children were rated by the  c r i t e r i a i n Appendix B pertaining to t h e i r progress i n physical  22  function over a two year period.  The group was l a t e r divided  according to the severity of the c h i l d ' s condition.  The results  of the rated material are tabulated and discussed i n Chapter I I . As the study progressed,  the need for a concise me-  thod of c o l l e c t i n g and recording information pertinent to the soc i a l casework process i n the c l i n i c a l s e t t i n g became more apparent.  Using the c r i t e r i a as explored i n the e a r l i e r study  (Schedules 1 and 2, Appendix A) the s i g n i f i c a n t areas of s o c i a l functioning were examined. p r o f i l e was developed.  Thereafter a revised and extended  This i s proposed i n Chapter III as a  framework for assessing l e v e l s of s o c i a l functioning for the disabled c h i l d ( in t h i s case the brain-injured c h i l d with cereb r a l palsy), and h i s family.  Suggestions are considered i n  Chapter IV for the application of t h i s instrument i n future. Limitations This project involves only a small group of cases selected f o r the purpose of exploring the extent t o which specific information has been recorded.  The l i m i t a t i o n s of the tabulated  material must therefore be recognized at the outset.  The sample  case records actually proved inadequate i n both consistency and uniformity of recording judged by the c r i t e r i a set out i n the schedules i n Appendix A.  Frequently t h i s material was documented  i n a general form, and occasionally was omitted e n t i r e l y .  More-  over, the repetitious content of the descriptive material i n the schedules presented d i f f i c u l t y i n i n t e r p r e t a t i o n . The children within the small sample also represent  23  different d i s a b i l i t y types, further complicated by a varied range of i n t e l l i g e n c e l e v e l s .  A d d i t i o n a l l y , the functional  progress ratings were determined on a purely subjective assessment of the c h i l d ' s progress over a two year period. The revised schedules have not been subjected to systematic application and are therefore presented as a specul a t i v e p r o f i l e only.  CHAPTER II FAMILY DIFFERENTIALS - A PRELIMINARY ANALYSIS The significance of stable parent-child relationships i n the c h i l d ' s development i s now generally accepted.  The  c h i l d ' s emotional environment i s composed primarily of h i s parents i n the early years of l i f e .  Their insight of the needs  of the c h i l d , t h e i r responsiveness and consistency, are condit i o n a l t o giving the c h i l d a f e e l i n g of security and acceptance. As stated e a r l i e r however, the aspects of the c h i l d ' s physical environment are also of import.  It has been noted that while  the economic status of the home must be taken i n t o account, the values and standards attached to high and low income classes must also be recognized. The ways i n which the c h i l d ' s emotional and physical environment affect his adaptation to a d i s a b i l i t y ,  therefore,  can only be measured and evaluated i f there i s some means of r a t i n g and standardizing relevant c r i t e r i a .  The significance of  parental attitudes toward the c h i l d for example, can only be studied and tested i f there i s a systematic assessment of the family circumstances of each c h i l d .  This might then be compared  with the degree of the c h i l d ' s d i s a b i l i t y and the general expect a t i o n of progress.  The following sample s e l e c t i o n of cases and  situations may contribute t o emphasize the p o s s i b i l i t i e s  inherent  25  i n combined medical-social research within a c l i n i c a l  setting.  D i f f e r e n t i a l s of Socio-economic Status The results of the ratings of family d i f f e r e n t i a l s on the l i n e s of the Varwig c r i t e r i a are presented i n Table 1. The percentage figures give additional significance to the differentials.  It i s important to note at the outset that there i s a  high percentage of cases within the higher income groups. (The Varwig study of hard-of-hearing c h i l d r e n , c a r r i e d out i n an out-patient h o s p i t a l c l i n i c , showed large percentages i n the lower income groups).  This leads one to question whether lower  income families are r e s t r i c t e d i n obtaining r e f e r r a l s from family doctors due to t h e i r i n a b i l i t y t o pay h i s  fee.  It might also indicate a lack of i n t e r e s t ,  or a lack  of awareness on the part of lower income families that a service is available.  There i s of course another a l t e r n a t i v e , namely,  that these families receive service elsewhere.  S t i l l following  the argument, the e a r l i e r study included families drawn from the whole province. i n mind f o r future  A l l these points must nevertheless be borne studies.  In spite of the high income group, there are not correspondingly high ratings i n the figures i l l u s t r a t i v e of socio-economic status.  This might be i n d i c a t i v e of the fact  that  high income does not necessarily correlate with high status, or a l t e r n a t i v e l y , the c r i t e r i o n was not accurately stated or i n terpreted for the purpose intended. The representative percentages showing the parents'  26 Table 1.  Ratings of Family D i f f e r e n t i a l s of the Brain-injured Child (Percentage Distribution) FACTOR  "  Poor  Good  Fair  1. Income  52  40  2. Employment  63  28  3. Housing  64  36  -  15  40  45  20  25  55  23  40  32  6. M a r i t a l Relations  52  40  8  7. F i n a n c i a l Management  6S  28  4  S. S o c i a l handicaps  60  32  a  9. Family s t a b i l i t y  76  24  -  36  -  11. Father-child relationship  64 68  24  4  12. Acceptance of handicap (mother)  48  52  Economic Status  4. Education 1 (mother) (father) 5. Socio-economic status  4  Family Strengths  10. Mother-child relationship  -  36*  62  13. Insight into c h i l d ' s needs  72  28  14. Handling of c h i l d  56  44  -  15. Cooperation with c l i n i c  60  36  4  16. Understanding of treatment goals  52  48  -  (father)  Percentage of known cases (20).  -  27  l e v e l s of education are more consistent with the socio-economic status figures than with those representing income l e v e l s . A cross-check was made of the apparent equality i n ratings between income l e v e l and marital status on the one hand (items one and s i x ) , and employment and f i n a n c i a l management on the other (items two and seven).  This i d e n t i f i e d forty percent  of the t o t a l cases as consistent i n the two ratings i n the former instance while seventy-six percent were consistent i n the l a t t e r .  This tends to confirm the obvious inference that a  p o s i t i v e relationship exists between employment and f i n a n c i a l management.  This i s at least true i n t h i s study on the basis of  the c r i t e r i a  set.  D i f f e r e n t i a l s of Family Strengths The findings show r e l a t i v e l y high scores i n the areas of family strengths with the exception of the item "acceptance of handicap".  The percentages i l l u s t r a t i n g f a t h e r - c h i l d re-  lationships are not necessarily as s i g n i f i c a n t as apparent i n the t a b l e .  The data i n the records i n t h i s area were documented  i n f a i r l y general terms i n a number of cases,  necessitating  subjective interpretation for r a t i n g . In these families, the s o c i a l handicaps other than marital problems; namely, unemployment, alcoholism, j a i l terms, poor physical and emotional health, absence of parent, and pregnancy at time of marriage; are not as apparent or gross as those i n the previous study.  Exploration of the data compiled re-  vealed that marital d i f f i c u l t y as described i n the schedules  is  28 evident i n twelve (forty-eight percent) f a m i l i e s , and f i n a n c i a l d i f f i c u l t y i n eight families (thirty-two percent).  This i n f o r -  mation must be considered with reservation i n view of the lack of evidence to the contrary i n the records. The item "acceptance of handicap" i l l u s t r a t e s graphic sense the whole significance of the study.  in a  Regardless  of the apparent l e v e l s of family strengths determined on the basis of the c r i t e r i a set,  there i s not a correspondingly high  l e v e l of acceptance of the c h i l d ' s d i s a b i l i t y . be argued these factors  are dependent on the subjective i n t e r -  pretation of the researcher, cance.  While i t might  i t does not negate t h e i r s i g n i f i -  It rather supports the importance of accuracy i n re-  cording data. The previous study does not give a clear i n d i c a t i o n of the manner i n which the data were assembled to reach an overa l l score for each family.  It i s assumed t h i s was done on the  basis of the average score; that i s , according to the l e v e l having the largest concentration of ratings for the sixteen items.  The family having a preponderance of " f a i r "  would then receive an average score of " f a i r " .  ratings  Such a r a t i n g  device can however be misleading and deserves i l l u s t r a t i o n here. The two sample cases selected for t h i s purpose, Roy's family and C h r i s ' family, are presented i n Table 2.  Scores were given each  family for the respective c r i t e r i a as outlined. On the basis of an average score f o r the t o t a l C h r i s ' family rating i s "good", and Roy's family " f a i r " .  list, At  29 Table 2.  Comparative Family Scores for Two I l l u s t r a t i v e Cases Rating: G - Good; F - F a i r ; P - Poor. Criterion  FAMILY Roy  Chris  1. Inc ome  F  G  2. Employment  F  G  3. Housing  F  G  (mother)  P  P  (father)  P  F  P  G  6. M a r i t a l relations  F  F  7. F i n a n c i a l management  F  G  8. S o c i a l handicaps  G  G  9. Family s t a b i l i t y  G  G  10. Mother-child r e l a t i o n s h i p  G  G  11. Father-child relationship  G  G  12. Acceptance of handicap  F  F  13. Insight into c h i l d ' s needs  G  G  14. Handling of c h i l d  G  G  15. Cooperation with c l i n i c  F  G  16. Understanding of treatment goals  F  G  Items 1-16  F  G  Items 1-5  F-P  G  Items 6-16  G  G  Economic Status  k. Education  5. Socio-economic status Family Strengths  Average Score:  30  sight these scores would i n f e r that C h r i s ' family i s  better  adapted to the problem of a disabled c h i l d i n the home than Roy's. On closer examination however, the areas showing greatest d i s agreement between the two families are those w i t h i n the f i r s t f i v e items.  These include income, employment, housing, educa-  t i o n a l l e v e l , and socio-economic status.  The i n c l u s i o n of these  for an average assessment tends therefore to place the balance of selected c r i t e r i a i n doubt.  Were Roy's family to be given  a r a t i n g of "good" i n three of these areas for example, i t would change h i s average score to "good".  Items one to f i v e then are  not i n d i c a t i v e of the f a m i l y ' s . a t t i t u d e s disability.  to the c h i l d and h i s  The items most i n d i c a t i v e of t h i s and of other  family strengths number s i x to sixteen i n c l u s i v e .  An average  score on these items alone thus changes Roy's family r a t i n g to "good".  The average family scores tabulated l a t e r i n t h i s chap-  t e r are therefore based on these eleven items alone. The C h i l d ' s Progress i n Physical Function The foregoing has i l l u s t r a t e d one means by which to turn recorded material into a r a t i n g device.  It i s now relevant  to examine whether environmental factors exemplified i n the t o t a l family score bear any r e l a t i o n s h i p to the c h i l d ' s progress i n functional capacity.  Taking account of the physician's diag-  nostic knowledge of the twenty-five children over a two year period, an assessment of each was made (see Appendix B).  This  was done on the l i n e s of the e a r l i e r study by r a t i n g the c h i l d ' s observed progress as good, satisfactory,  slow, or poor.  The  children were i n addition rated i n accordance with the following  31 levels of r e l a t i v e progress i n functional a b i l i t y : AA - As anticipated or better. BB - Some improvement, but not t o the l e v e l expected. CC - No improvement; or d e t e r i o r a t i o n . The diagnostic problems represented include three children with athetosis, nine with spastic quadriplegia, f i v e with spastic hemiplegia, and eight with spastic  paraplegia.  The r e s u l t s of these medical assessments are tabulated by degree of d i s a b i l i t y and are presented i n Tables 3 and 4. While the numbers are small, the implication of the data i n Table 3 suggests that the children progressed i n r a t i o to the degree of d i s a b i l i t y .  That i s , the children with a mild d i s a b i -  l i t y made on the average more satisfactory progress than those with a moderate or severe d i s a b i l i t y .  None of the children  with a mild condition f e l l within the lowest category.  Con-  versely none of the moderate or severe group f e l l within the highest category.  Further, while i t i s a smaller  group, the r a t i o of the figures  representative  i n the severe category  indicate  lower r e l a t i v e scores than those i n the moderate or mild groups. The figures  i l l u s t r a t i n g the c h i l d ' s r e l a t i v e progress (Table 4)  indicate that while the c h i l d with a mild d i s a b i l i t y makes progress as a n t i c i p a t e d , those with moderate and severe d i s a b i l i t y i n f a i r l y equal r a t i o show r e l a t i v e l y less improvement than expected.  This i s again on the basis of the c r i t e r i a set.  That  i s , there i s a higher weighting of scores i n the "AA" category for the mild group than for the moderate and severe.  These  findings tend to bear out the importance of recognizing the s i g nificance of normal growth and development factors when a n t i -  32 Progress i n F u n c t i o n a l A b i l i t y over a two year p e r i o d T a b l e 3.  Observed Progress  Degree o f d i s a b i l i t y Mild  Rating:  A B C D  -  Good Satisfactory Slow Poor  Rating A  B  1  '  Total  C  D  5  1  -  7  5  5  2  12  Severe  -  2  2  2  6  Total  1  12  S  4  25  Moderate  T a b l e 4.  Relative  Progress  Degree o f d i s a b i l i t y  R a t i n g : AA - As a n t i c i p a t e d BB - Not t o l e v e l expected CC - No change Rating BB  Mild  7  -  -  7  Moderate  5  5  2  12  Severe  3  3  -  6  15  S  2  25  Total  '  Total  AA  CG  33  cipating change i n the c h i l d * s functional progress. Relationship of Progress to Physical and Emotional Environment A more comprehensive analysis of the findings i s now pertinent.  discussed  The findings r e l a t i v e to the c h i l d ' s physical  progress, and the family's ratings are presented i n Table 5. The discussion w i l l refer to the factor depicting r e l a t i v e progress i n the c h i l d .  The factor of observed progress i s included  i n the table as a d d i t i o n a l i n t e r p r e t a t i o n . Of the twenty-five f a m i l i e s ,  f i f t e e n received an  average score within the "good" category and are l i s t e d i n Group I.  Ten families scored within the " f a i r " category and are  in Group I I .  None received an average score of "poor".  Group I s i x children have mild d i s a b i l i t i e s . mily ratings and good progress ratings.  listed  Within  A l l have good f a -  There are only two c h i l -  dren i n t h i s group with a severe d i s a b i l i t y .  Conversely, there  are four children i n Group II with a severe d i s a b i l i t y . Peter and Sammy i l l u s t r a t e children f o r whom the c r i t e r i a f a i l e d to e l i c i t the true parental s i t u a t i o n .  While both c h i l -  dren receive warmth and love, i n both situations i s prevalent.  overprotection  This i s more a matter of pampering i n Peter's  than as an expressed fear for his safety.  case  He has average i n -  t e l l i g e n c e and only a mild d i s a b i l i t y , yet he tends to be emot i o n a l l y dependent and c o n t r o l l i n g i n h i s behaviour. while his functional progress i s i n l i n e with that  Therefore  anticipated,  there are s i t u a t i o n a l factors which undoubtedly impinge on h i s emotional maturity.  This point bears out the reference to  34 Table 5 .  Comparative Ratings of Family Scores and Functional Progress of the C h i l d  Family r a t i n g : Group I - Good Group II - F a i r  Functional r a t i n g : Relative progress - RP Observed progress - OP  Disability Degree Type 2  Child  Functional Progress OP  RP  A  AA  SP  Mild  GROUP I Dick  SQ SP SQ SP SQ SP SQ AQ SH  Moderate Mild Moderate Mid Mild Mild Severe Mild Moderate  Brenda Diane Sammy Nick Peter Chris Ken Neil Gordon  B B B B B B B C D  AA AA AA AA AA AA AA AA AA  SH SQ SH SP  Severe Moderate Moderat e Moderate  Ruth Doug Shirley Roy  B C C c  BB BB BB BB  AQ  Moderate  Bobbie  D  CC  SP SP SH SQ SQ  Moderate Mild Moderate Severe Severe  GROUP II Lynn Louise Don John June  B B B D D  AA AA AA AA AA  SQ AQ SQ SH  Moderate Severe Severe Moderate  Philip Ellen Alan Ian  B C C C  BB BB BB BB  SP  Moderate  Bill  C  CC  'See Appendix B. D i s a b i l i t y types:  SP SQ SH AQ  -  spastic paraplegia spastic quadriplegia spastic hemiplegia athetoid quadriplegia.  35  emotional factors e a r l i e r i n the study. Sammy's overprotection may i n part be accounted for by the c u l t u r a l heritage of his family where the i l l are expected to be helpless and cared for.  There were indications i n  the record that t h i s tendency was lessening as the parents were helped to reach an understanding of the need for the c h i l d to develop self-confidence and independence.  The language b a r r i e r  furthermore posed some d i f f i c u l t i e s for the s t a f f i n working with t h i s family. Ruth's average family score i s good, yet when further analysed, f a i r scores only were prevalent i n the areas of "acceptance of handicap" and "cooperation with c l i n i c " .  The  c h i l d ' s d i s a b i l i t y i s severe, yet she has average i n t e l l i g e n c e . There are both c u l t u r a l and socio-economic factors to be taken into consideration i n her family.  Her parents are of different  r a c i a l o r i g i n and they place emphasis on f i n a n c i a l gain somewhat to the exclusion of concern for the c h i l d . Of the children i n Group I I , illustrates  Alan's family situation  other s i g n i f i c a n t s t r e s s f u l environmental conditions.  His parents are European and have had considerable re-establishing t h e i r home i n t h i s country.  difficulty  His father has  never maintained steady employment since t h e i r a r r i v a l i n Canada. While there i s warmth i n the family r e l a t i o n s h i p s , there i s also evidence of over-solicitude on the part of the mother as expressed i n unnecessary anxiety and concern over the c h i l d ' s health, and hesitancy i n encouraging his independence. ponding h e s i t a t i o n and fearfulness  Corres-  i s evident i n the c h i l d ' s  36 attitudes to people.  The c h i l d ' s slow progress may r e l a t e to  these environmental stresses or a l t e r n a t i v e l y to the degree of disability,  or to both.  Another c h i l d i n t h i s group, P h i l i p , has a moderate disability.  He i s an adopted c h i l d , and there i s evidence of  c o n f l i c t between parental attitudes toward and acceptance of his d i s a b i l i t y .  Occupational pressures and economic stress  have further aggravated the marital discord.  These  factors may conceivably therefore have affected  situational  the c h i l d ' s  response to therapy. Ian has only a moderate d i s a b i l i t y , and average i n telligence,  yet here again, there are c o n f l i c t i n g attitudes on  the part of the parents i n the management of the c h i l d .  One  parent i n p a r t i c u l a r has had d i f f i c u l t y i n accepting the c h i l d ' s disability.  There i s notable socio-economic stress within the  home as w e l l . B i l l y , the l a s t c h i l d i n t h i s group, has average i n t e l l i g e n c e and a moderate d i s a b i l i t y .  His parents both have a  poor educational l e v e l , and rate within the lowest economic group.  socio-  The father i s frequently unemployed and finan-  c i a l management within the home i n general i s poor.  The pa-  rents also have d i f f i c u l t y accepting the c h i l d ' s d i s a b i l i t y . Thus, while he has an average i n t e l l e c t u a l capacity his phys i c a l progress appears to have been retarded, and may r e f l e c t his home environmental atmosphere.  37  One study of parents by Murstein 1 i s i l l u s t r a t i v e of the atmosphere i n B i l l y ' s family, and lends insight to the need for further exploration i n future projects of the present kind. Murstein concluded that emotional adjustment was related t o the variables tion.  of education, i n t e l l e c t u a l understanding and occupa-  Furthermore, "democratic a t t i t u d e s " were found more f r e -  quently amongst parents with a high educational l e v e l . with a lower l e v e l exhibited passive-neglectful  Those  or a c t i v e l y hos-  t i l e attitudes toward the c h i l d r e n . While the foregoing analysis has e l i c i t e d results of some apparent  significance i n that a relationship exists between  the c h i l d ' s progress i n functional capacity and home environment, i t cannot be accepted with complete v a l i d i t y i n view of the l i m i t a t i o n s previously outlined. nevertheless,  It i s apparent i n t h i s  study  that regardless of the high income group repre-  sented there i s a relationship between the c h i l d ' s progress i n functional a b i l i t y , and the emotional home environment.  Murstein, Bernard I . , "The Effect of Long-term I l l n e s s of Children on the Emotional Adjustment of Parents," Child Development, v o l . 31 (March I960), pp. 157-171.  CHAPTER III A FRAMEWORK TO ASSESS LEVELS OF SOCIAL FUNCTIONING The d i s t i n c t i v e feature of the family s i t u a t i o n which concerns the medically oriented s o c i a l worker i s the effect  an  i l l n e s s or d i s a b i l i t y has on the dynamics of parent-child relationships.  In addition to the generic knowledge and s k i l l s  which are basic t o the profession,  the c l i n i c a l s o c i a l worker  has a s p e c i f i c contribution to make i n providing factual i n f o r mation about the family circumstances and the i n t e r a c t i o n of family members.  A d d i t i o n a l l y , the s o c i a l worker may use the  data to provide interpretation of the c h a r a c t e r i s t i c meaning a d i s a b i l i t y has f o r the parents and c h i l d .  This necessitates the  seeking of data which w i l l be both relevant and useful not only for the s o c i a l worker, but also for the i n t e r d i s c i p l i n a r y team. It must be understood however that not a l l the data can be obtained i n one or two interviews; i n some cases i t may require a f a i r l y lengthy period of contact with the family, dependent on the degree of parental anxiety.  Home v i s i t s ,  particularly in  the i n i t i a l stage of contact are considered essential to understand the f u l l implications of the family s i t u a t i o n . There are s p e c i f i c  areas of knowledge which are con-  sidered essential to the understanding of family relationships. In the Varwig schedule (see Appendix A, Schedule 1 ) , the following are included i n the c h i l d ' s evaluation:  39 1. 2. 3. 4. 5. 6. 7.  P h y s i c a l Development General I n t e l l i g e n c e Mental A l e r t n e s s Emotional Development Self-Assurance Self Control Happiness  S. 9. 10.  R e l a t i o n s h i p w i t h Mother Relationship with S i b l i n g s A b i l i t y to r e l a t e to other Children 11. A b i l i t y t o r e l a t e t o Strangers 12. Response to S o c i a l S t i m u l a t i o n 13. C o o p e r a t i o n ( C l i n i c ) 14. W i l l i n g n e s s t o l e a r n (New e x p e r i e n c e s )  In the present context these areas of knowledge are as p e r t a i n i n g t o l e v e l s o f s o c i a l  identified  functioning.  " S o c i a l f u n c t i o n i n g " r e f e r s to the i n d i v i d u a l ' s patt e r n s o f behaviour which can be terms of a d a p t a t i o n situations.  observed and  differentiated in  t o s t r e s s f u l and n o n - s t r e s s f u l  environmental  Presumably, the l e s s s t r e s s i n a s i t u a t i o n , the  more l i k e l i h o o d o f adequate s o c i a l f u n c t i o n i n g and s a t i s f a c t i o n f o r the person  involved.  In c o m p i l i n g and  the data necessary t o e v a l u a t e the  degree o f s t r e s s , and  or f a m i l y i n any  i t s meaning f o r t h e i n d i v i d u a l c h i l d  environmental s i t u a t i o n , the t o t a l i t y of  l o g i c a l , psychological,  s o c i o l o g i c a l , and  be taken i n t o c o n s i d e r a t i o n . into three  physio-  c u l t u r a l f a c t o r s must  For t h e c h i l d , t h e s e may  primary c l a s s i f i c a t i o n s of a d a p t a b i l i t y : (a)  l o g i c a l , i n c l u d i n g p h y s i c a l and mental; (b) emotional; (c)  cause  be  divided physio-  and  social.  Physiological Adaptability The clude gence.  data p e r t i n e n t  to p h y s i o l o g i c a l a d a p t a b i l i t y i n -  g e n e r a l h e a l t h , p h y s i c a l development, and The  general  l a t t e r e l i c i t s further data relevant to  a d a p t a b i l i t y which i n c l u d e l e a r n i n g c a p a c i t y , t a s k  intelli-  learning performance,  40 and response to new experience. From the physiological aspect, one of the most  baffling  diagnostic and developmental elements a f f e c t i n g the management of the brain-injured c h i l d , including the c h i l d with cerebral i s that of perception.  palsy,  Sensory and motor impairments have i n  the past received more attention than disturbances  i n the mental  processes which might also be attributed to the i n j u r y .  The  mental processes of perception, conceptual formation, language, and emotional behaviour may be thereby affected. "disturbances  It follows that  i n one of these areas may influence detrimentally  the functioning and development of-the o t h e r s . " 1  This i s  true  whether or not the injury involves a neuromotor d i s a b i l i t y . While r e a l i t y demands are frequently a source of conf l i c t and anxiety for the normal c h i l d during his maturational process, the i n t e n s i f i c a t i o n of these f o r the brain-injured c h i l d may r e s u l t i n some impairment of i n t e l l e c t and/or mature behaviour, actual or apparent.  The d i s t o r t i o n of stimuli received  through v i s u a l , auditory, t a c t i l e or kinesthetic sources r e s u l t s i n the c h i l d comprehending only a part of the whole which the c h i l d with normal perception takes for granted. ted behaviour patterns of stubbornness,  Thus exaggera-  l y i n g , fantasy, hyperac-  t i v i t y , inconsistency, and d i s t r a c t a b i l i t y  frequently t y p i f y the  Lewis, Richard S., Strauss, A . A . , and Lehtinen, L . E . , The Other Child; the Brain-Injured C h i l d , a Book for Parents and Laymen, Grune and Stratton, New York, 1951, p. 26.  41 brain-injured c h i l d .  Added to t h i s ,  " . . . t h e makeup of the c h i l d  not only contributes to the way he reacts to his parents and to the world, but also i n some measure influences how parents and the world react to h i m . " 1 Thus physiological adaptability concerns both the physical health and the development of the c h i l d .  I f either of  these i s poor or subject to stress there i s l i k e l i h o o d of s o c i a l functioning being impaired.  Mental a b i l i t y i s a l s o a physiolo-  g i c a l l y determined adaptation.  While i t i s d i f f i c u l t to assess  with accuracy the i n t e l l i g e n c e of some children with a d i s a b i l i t y , i t i s also recognized that others perform at a lower l e v e l than the p o t e n t i a l indicated by psychometric t e s t i n g .  This under-  l i n e s the need to consider both mental and physical function when assessing learning adaptability or capacity.  A c h i l d for example  may have good i n t e l l i g e n c e , yet due to a perceptual d i f f i c u l t y or other brain pathology, w i l l be e a s i l y distracted and unable to concentrate on a physical task, or give attention to a mental exercise except f o r periods of short duration.  This may apply  i n s o c i a l learning generally, or adaptation to new experiences. Emotional Adaptability Data r e f e r r i n g to emotional adaptability comprise emot i o n a l development, s e l f - c o n t r o l , and attitude to d i s a b i l i t y . The stages of personality development relevant to ego function  L i t t l e , Sherman, " S o c i a l and Emotional Handicaps of C h i l d r e n , " Pediatric C l i n i c s of-North America: Symposium on Handicaps and Their Prevention, ed. C C . Fischer, W.B. Saunders C o . , P h i l a d e l phia and London, August, 1957, p. 733.  42 provide the basis on which to assess the c h i l d ' s l e v e l of emot i o n a l adaptability or maturity at any given age. moreover achieves ency.  Maturity  some c l a r i t y i f considered i n terms of depend-  The anxious c h i l d i s for some reason a f r a i d t o give up  his dependency e n t i r e l y , f e e l i n g insecure i n himself and i n h i s relationships with others. haviour.  This i n turn shows up i n his be-  The secure c h i l d i s by contrast able to control his  own desires within reasonable l i m i t s . attention-seeking reactions  The frequent demands and  of the hurt or anxious c h i l d may be  h i s way of gaining r e t r i b u t i o n from his apparently environment.  restrictive  The c h i l d who views his d i s a b i l i t y as such a res-  t r i c t i o n or c o n t r o l , or as a "punishment", may also respond i n t h i s negative way. Social Adaptability Items i n d i c a t i v e of s o c i a l adaptability  embrace a range  of areas of s o c i a l relationships i n v o l v i n g the mother, siblings, staff.  father,  neighbourhood children and adults, and f a m i l i a r  clinic  S i b l i n g relationships are complicated by the t o t a l  parent-  c h i l d i n t e r a c t i o n ; but they may on occasion highlight or give i d e n t i f i c a t i o n to the existence of pathology i n the parent-child situation.  The c h i l d ' s relationships to other children and  adults, both familiar and strange, are more subtle.  His r e l a -  tionship to other children may d i f f e r depending on whether or not there are environmental controls i n operation.  Thus, an un-  happy c h i l d may strike out at other children i f he finds hims e l f i n a position where adult r e s t r i c t i o n s are absent.  43 The c h i l d who experiences the r i g i d c o n t r o l of his parents may be f e a r f u l of exhibiting a negative reaction toward them.  He  may unconsciously however f e e l safe i n giving vent to these feelings when with other adults. the people i n his environment.  A cooperative c h i l d trusts A lack of cooperation may be i n  part a demonstration of fear or mistrust. These are the p a r t i c u l a r areas of concern i n assessing a c h i l d ' s l e v e l s of s o c i a l functioning.  While the c h i l d ' s socio-  emotional environment i s comprised primarily of parental  influ-  ences and a t t i t u d e s , the inherent meaning of h i s s i t u a t i o n can only be understood i f the wider family-community c u l t u r a l environment i s taken into account.  In effect, by emphasizing the  concept of the "whole c h i l d " , the concept of the "whole family" achieves greater  significance.  Adaptation of the Family In the family schedule (see Appendix A, Schedule 2), the Varwig c r i t e r i a include the following items: 1. 2. 3. 4. 5. 6. 7. 8.  Income Employment Housing Education Socio-Economic Status M a r i t a l Relations F i n a n c i a l Management S o c i a l Handicaps  9. Family S t a b i l i t y 10. Mother-child Relationship 11. Father-child Relationship 12. Acceptance of Handicap 13. Insight into C h i l d ' s Needs 14. Handling of Child ( d i s c i p l i n e ) 15. Cooperation with C l i n i c 16. Understanding of Treatment goals.  Within the present context, i n addition to the possib i l i t y of physiological stress or i l l health, data pertaining to the family's adaptation to stress may be divided into two broad areas; namely, those r e l a t i n g to socio-economic status and socioc u l t u r a l standards.  44 Physiological Stress The physical and emotional health of parents; t h e i r degree of maturity and s t a b i l i t y ,  or ego strength;  and t h e i r  i n t e l l i g e n c e determines t h e i r adaptability to t h e i r socioeconomic and s o c i o - c u l t u r a l environment. I l l health may represent  a threat to family  stability  and create pressure on the roles of i n d i v i d u a l family members. In a d d i t i o n , . . . t h e effects of i l l n e s s on an i n d i v i d u a l , his family, and his close associates can have as many different meanings as there are possible combinations of such factors as personality development, s o c i a l conditions, environmental pressures, ways of becoming i l l or handicapped, methods of t r e a t ment and possible r e s u l t s . Poor health of the father,  i f the primary wage-earner,  and r e q u i r i n g his absence from work for a prolonged period, w i l l affect the economic and f i n a n c i a l s t a b i l i t y of the home.  Poor  health of the mother i f severe or chronic w i l l throw greater r e s p o n s i b i l i t y on e i t h e r the father or the elder children i n the household management. Socio-economic Status Within North American society,  c u l t u r a l meaning has  significance p a r t i c u l a r l y i n the class structure and i n related value systems.  The occupational structure i s perhaps the fun-  damental c r i t e r i o n upon which the class concept i s based.  ^Elledge, Caroline, "The Medical S o c i a l Worker," The Handicapped and Their Rehabilitation, ed. Harry A. Pattison, C C . Thomas, S p r i n g f i e l d , 1 1 1 . , 1 9 5 7 , p. 4 1 6 .  45 C l o s e l y r e l a t e d t o t h i s i s i n d i v i d u a l socio-economic s t a t u s : . . . c h i l d - r e a r i n g e f f o r t s are g r e a t l y f a c i l i t a t e d i f parents f e e l t h a t they are sure o f t h e i r p l a c e i n s o c i e t y . The economic arrangements o f t h e soc i e t y p l a y a l a r g e p a r t i n t h e promotion of such f e e l i n g s i n parents. Economic arrangements must t h e r e f o r e s u s t a i n the l i e f t h a t the i n d i v i d u a l matters and  t h a t l i f e has  dignity  beand  meaning i n o r d e r t o m a i n t a i n h e a l t h of p e r s o n a l i t y i n both c h i l d hood and adulthood. may  The  value a t t a c h e d  a f f e c t emotional w e l l - b e i n g  to achievement moreover  i n r a t i o t o the  come s a t i s f i e s the ambitions and  expectations  degree t h a t i n -  o f f a m i l y members.  Some s t u d i e s have shown a r e l a t i o n s h i p between economic s t a t u s and  incidence  of physical disease.  Furthermore,  can g i v e "evidence t h a t low income and  low  anthropologists  s o c i a l s t a t u s go t o -  gether and t h a t c h i l d r e n from the lowest l e v e l of American c i e t y are looked  down upon and  discriminated against."  t i o n , employment, income, housing and  3  so-  Educa-  r e s i d e n t i a l area are a l l  c r i t e r i a i n d i c a t i v e of socio-economic s t a t u s , and  are at t h e same  time c l o s e l y i n t e r r e l a t e d . S o c i o - c u l t u r a l Standards S i g n i f i c a n t areas r e l a t e d p r i m a r i l y t o t h e t u r a l value  concept but which may  socio- cul-  be i n d i r e c t l y a f f e c t e d by  c i a l c l a s s concepts are p a r e n t a l a u t h o r i t y ; h e a l t h , and  so-  attitudes  - Witmer, H.L., and Kotinsky, R., ed., P e r s o n a l i t y i n t h e Making, The F a c t - F i n d i n g Report of the Midcentury White House Conference on C h i l d r e n and Youth, Harper and B r o t h e r s , New York, 1952, p. 104. L  2  Ibid.  3 I b i d . , p.  119.  46  to disease or d i s a b i l i t y ; the professions.  religious beliefs;  Generally speaking,  and attitudes to  i n the upper middle class  family today, parental authority i s mutually recognized and shared.  S t i l l , there are families within any s o c i a l class group  where authority may be exercised primarily or unquestionably by one or other spouse.  When there i s c o n f l i c t or uncertainty of  the parental r o l e s , the r e s u l t i n g disharmony i n e v i t a b l y w i l l affect the c h i l d r e n .  Role relationships moreover provide an  i n d i c a t i o n of consistency i n or deviation from normative behav i o u r , as well as making evident the i n d i v i d u a l ' s attitudes and values.  "Roles" then are more or l e s s inherent i n a l l areas of  s o c i a l functioning. It i s recognized that i l l n e s s , threats to ego-integration, behaviour patterns.  s t r e s s , and g r i e f ,  may cause regressive or  as  defensive  Parental attitudes of r e j e c t i o n and over-  protection have been suggested as being detrimental to a c h i l d ' s emotional development, and can become greatly i n t e n s i f i e d i f the c h i l d has a d i s a b i l i t y .  One writer mentions excessive demands,  minimizing accomplishments,  and overstressing  those t y p i c a l of the rejecting parent. tions of a f f e c t i o n ,  a mild handicap as  Exaggerated demonstra-  expressed fears of i n j u r y , and forbidding of  independent a c t i v i t y are those i n d i c a t i v e of o v e r p r o t e c t i o n . 1 Inconsistency,  permissiveness and anxiety also tend to e l i c i t  responses from the c h i l d symptomatic of behaviour disorder.  Cooper, W., M . D . , "The Emotional Problems of the Physically Handicapped C h i l d , " Emotional Problems of Childhood, ed. Liebman, S., J.B. Lippincott C o . , 1958, p. 162.  47  While many of these attitudes are reinforced by s o c i a l pressures, or the responses of r e l a t i v e s and friends,  i t i s expedient none-  theless to enquire why they p r e v a i l . It i s not easy for parents to d i s t i n g u i s h between acceptance of t h e i r c h i l d and acceptance of his d i s a b i l i t y . to s o c i e t y ' s  Due  emphasis on competition and achievement however,  "the capacity to produce unimpaired offspring i s psychologically and c u l t u r a l l y important for the parent's sense of personal adequacy." 1  D i s a b i l i t y i n a c h i l d then, severely t e s t s t h e i r  a b i l i t y to maintain t h e i r emotional balance and consequently appropriate s o c i a l functioning.  It may for some parents be a  constant reminder of t h e i r f a i l u r e to produce a normal c h i l d , which i s disturbing i n turn t o t h e i r own self-image and ego. The c h i l d becomes overprotected i n part as a protective defense to r e t a i n t h e i r own ego-identity. a form of r e j e c t i o n .  In a sense then t h i s i s also  Such b a s i c a l l y anxious and frightened pa-  rents need reassurance, and exoneration from blame.  While not  refuting t h i s , a r e a l i s t i c recognition of the c h i l d ' s l i m i t a tions i s i n d i c a t i v e of a healthy a t t i t u d e . Commonly, parents of disabled children are too d i s turbed or defensive i n t h e i r relationships t o the c h i l d to consider future r e a l i t y ; others plan u n r e a l i s t i c a l l y .  In consi-  deration of the whole family, a r e a l i s t i c appraisal must involve both positive and negative a t t r i b u t e s  i n the s i t u a t i o n .  •"•Kozier, Ada, "Casework with Parents of Children Born with Severe Brain Defects," Social Casework. V o l . 38 ( A p r i l 1957), p. 134.  . .  48"  Planned i n s t i t u t i o n a l care for certain c h i l d r e n may prove to t h e i r own as well as to t h e i r f a m i l y ' s benefit i n terms of future  happiness. Occasionally, i n d i v i d u a l s experience c o n f l i c t s  to t h e i r r e l i g i o u s values and b e l i e f s  related  i n t h e i r recognition and  acceptance of an i l l n e s s or d i s a b i l i t y .  The l a t t e r may be con-  sidered a "punishment", and attitudes of denial or non-interference may represent  an obstacle to appropriate  Primitive superstitions  treatment.  and t r a d i t i o n a l f o l k l o r e s t i l l p r e v a i l  to varying degrees p r e c i p i t a t i n g c o n f l i c t with modern s c i e n t i f i c medical p r a c t i c e .  A person's e t h i c a l or r e l i g i o u s values may be  a c r u c i a l factor influencing attitudes to the medical  profession,  or a medically oriented agency, but i t i s one too seldom appreciated.  These personal b e l i e f s  are i n addition, i n t r i c a t e l y re-  lated to the i n d i v i d u a l ' s adaptive behaviour and as such are fundamental t o i n c l u s i o n i n c r i t e r i a i n d i c a t i v e of s o c i a l functioning.  Further to t h i s , Charlotte Towle has commented that:  Through the influence of r e l i g i o n the purpose of human l i f e i s better understood and a sense of e t h i c a l values achieved. With that understanding comes keener appreciation of the i n d i v i d u a l ' s rel a t i o n s h i p to his fellow man, his community, and his N a t i o n . 1 A c r i t e r i o n r e f l e c t i n g s o c i a l interests and a c t i v i t i e s provides a measure of the parent's concerns beyond t h e i r immediate circumstances.  It i s recognized nevertheless  that one or  Towle, Charlotte, Common Human Needs, American Association of S o c i a l Workers, New York, 1 9 5 3 , p. 8  49 other parent can develop and participate i n these to the exclusion of the primary family-centered  activities  interest.  L i t t l e enough attention has been given the actual i n fluence of community attitudes toward the family and t h e i r d i s abled c h i l d ; values.  or toward t h e i r l i v i n g and ethnic standards and  It i s only by systematic recording of these as expe-  rienced and verbalized by the family that a degree of v a l i d i t y may be given to assumed ideas. In l i g h t of p h y s i o l o g i c a l , economic, s o c i a l and c u l t u r a l s t r e s s , the f a m i l y ' s levels of s o c i a l functioning may thus be conceived as a dichotomy of adaptation with reference to s o c i a l class structure and s o c i o - c u l t u r a l standards or values. A Proposed Revision of the  Schedules  On the basis of the material discussed, the  schedules  i n Appendix C were developed as a re-interpretation of the Varwig data supplemented by additional c r i t e r i a .  The descriptive  ratings are presented i n terms of levels of s o c i a l functioning, or adaptation to stress.  Specific sub-groups are suggested  within some of the descriptive categories i n view of the comp l e x i t y and v a r i a b i l i t y of human adaptation. In the c h i l d ' s schedule, the category "physical development" required more d e f i n i t i v e meaning than that  elicited  i n the o r i g i n a l schedule, thus the category "general health" was added.  The previous grouping of general i n t e l l i g e n c e  levels  was disproportionate to the problems of the children being studied.  Consideration must be given those children whose  t i e s could not be accurately tested.  abili-  50 The category "learning capacity" combines two items of the e a r l i e r schedule, namely, "mental alertness" and " w i l l i n g ness to l e a r n " .  The category "task performance", as differen-  t i a t e d from learning a b i l i t y was developed as a separate item, being conceived as more than an aspect of "self-assurance" as inferred i n the e a r l i e r c r i t e r i a . Items twelve and fourteen of the Varwig c r i t e r i a were combined to form item s i x i n the revised l i s t .  As " s o c i a l  stimulation" i s inherent i n a l l s o c i a l r e l a t i o n s h i p s , the explanatory d i v i s i o n , of t h i s c r i t e r i o n i n the o r i g i n a l schedule was f e l t t o be more accurately stated i n terms of adaptability to new experience. The revised item of "emotional development" combines descriptions previously under the three headings of self-assurance, s e l f - c o n t r o l , and happiness.  It now precludes factors  such as d i s t r a c t a b i l i t y and short concentration span as being i n d i c a t i v e of emotional imbalance per se.  These factors rather,  are incorporated i n the explanatory material within the areas of academic and experiental learning, and of task performance, thereby becoming clues to identify perceptual d i f f i c u l t y . The item " s e l f - c o n t r o l " i s revised as primarily ref l e c t i n g the a b i l i t y to accept l i m i t s and d i s c i p l i n e . The o r i g i n a l c r i t e r i a f a i l e d to include the attitude of the c h i l d to h i s father and to h i s d i s a b i l i t y .  Also the  disabled c h i l d frequently experiences the overprotecbion of an elder s i b l i n g as much as of the parents.  These factors are  taken into account i n the revised schedule.  51  The c h i l d ' s relationship t o other c h i l d r e n may d i f f e r depending on whether or not a c t i v i t y occurs within a controlled environment.  The suggestion i s made i n the schedule that the  setting be designated.  Relationships to adults are divided to  include familiar and unfamiliar  situations.  In the family's schedule, the category of employment i s extended to form two separate items i n order t o e l i c i t i n formation pertaining to the occupational group as well as to the employment record. D i s c i p l i n e and consistency are inseparable child relationships,  from parent-  therefore some of the d e s c r i p t i v e material  of items t h i r t e e n and fourteen i n the o r i g i n a l schedule was combined and i s included i n the revised items of parent-child r e lationships. The revised item "attitude to d i s a b i l i t y " was changed from "acceptance of handicap" to indicate e s s e n t i a l l y the parent's recognition of the l i m i t a t i o n s presented by the d i s a b i l i t y . The additional data proposed i n t h i s schedule include the f o l l o w i n g : health, r e s i d e n t i a l d i s t r i c t ,  socio-economic  mate, r o l e perception, assessment of the c h i l d ' s future, values,  cli-  ethical  community a c t i v i t y , and s o c i o - c u l t u r a l community a t t i -  tudes. The health of parents may be a primary f a c t o r i n f l u e n cing parent-child relationships as has been pointed out, and thereby warrants i n c l u s i o n separate from " s o c i a l handicaps" inferred i n the e a r l i e r  as  criteria.  The item socio-economic climate i s devised to e l i c i t  52 parental expectations  and feelings with respect to t h e i r socio-  economic s i t u a t i o n . Rating Methods The formulation of c r i t e r i a according to levels of s o c i a l functioning i s needed i n a l l branches of s o c i a l work. The f i r s t successful  family p r o f i l e developed along these l i n e s  was that of the family-centered project of St.  Paul.1  Culmina-  t i n g ten years of research with multi-problem f a m i l i e s , the c r i t e r i a are divided on a r a t i n g scale  "adequate-marginal-inade-  quate", according t o family behaviour being i n l i n e with community  expectations. The family schedule of the present study, while d i f f e r -  ing i n emphasis,  covers the same general areas of knowledge of  intra-family r e l a t i o n s h i p s , with the possible exception of det a i l i n role-performance.  Within t h i s context however the  grading of data A-C i s not concerned with the fact that the fam i l y ' s behaviour i s a threat to the community.  It i s concerned  with intra-family c o n f l i c t affecting the family s o l i d a r i t y and well-being.  Moreover, i n t h i s c l i n i c a l s e t t i n g ,  the assumption  i s that the stress p r e c i p i t a t i n g c o n f l i c t i s primarily centered i n a specific factor;  namely, a disabled c h i l d i n the family.  Thus i n grading the data A-C according to levels of adaptability to s t r e s s , the area of s o c i o - c u l t u r a l adaptation w i l l i n the main  -•-Geismar, L . L . and Ayres, B . , "Patterns of Change i n Problem F a m i l i e s , " Family Centered Project, Greater St. Paul Community Chest and Councils, I n c . , St. Paul, (July 1959), pp. 30-3$.  53 r e f l e c t the existence of t h i s c o n f l i c t .  Within t h i s group only-  then the r a t i n g may be conceived along the l i n e s of the study c i t e d i n the following manner: A - adaptation conducive to the family's well-being B - adaptation a potential threat to the f a m i l y ' s well-being C - adaptation constituting a concern to the w e l l being of the family and secondarily to the community. The l e v e l of adaptation i n the physiological and socio-economic areas may or may not have relevancy to the c o n f l i c t and hence does not warrant r a t i n g i n these terms. S i m i l a r l y , for the brain-injured c h i l d , the levels of adaptability w i l l r e f l e c t functioning pathology primarily i n the emotional-social areas.  Rating i n these groups only might be  conceived as adequate-inadequate i n so far as the adaptation conducive t o , or a threat to the c h i l d ' s well-being.  is  Again,  physiological adaptation may serve to highlight or give i d e n t i f i c a t i o n to pathology evident i n the foregoing areas. I f i n addition, or a l t e r n a t i v e l y , i t i s desirable  to  make an o v e r a l l assessment of the family's adaptability to environmental stress on the basis of the average score, the c r i t e r i a i n d i c a t i v e of s o c i o - c u l t u r a l standards only, items eight to twenty, should be rated.  The c r i t e r i a i n d i c a t i v e of socio-eco-  nomic status, items two to seven, along with item one,  reflect  adaptability i n face of economic, s o c i a l , c u l t u r a l and physiol o g i c a l stress.  Items twelve to seventeen indicate  adaptability  to the stress of a disabled c h i l d i n the home, but are also a r e f l e c t i o n of s o c i o - c u l t u r a l standards.  54 Item twenty-one,  " f a m i l y s t a b i l i t y " , may  serve as  the c r i t e r i o n a g a i n s t which t o measure the average  assessment  o f items e i g h t t o twenty, and i f d e s i r a b l e , items twelve t o seventeen.  Scores may  one t o seven  then be f u r t h e r c o r r e l a t e d w i t h items  respectively.  In r e c o g n i t i o n o f the b r a i n - i n j u r e d c h i l d ' s enhanced s u s c e p t i b i l i t y t o environmental s t r e s s , the o v e r a l l  assessment  of s o c i a l f u n c t i o n i n g by an average score r a t i n g must a l l o w f o r a d a p t a b i l i t y t o p h y s i o l o g i c a l c o n d i t i o n s o f h e a l t h , p h y s i c a l development  and i n t e l l i g e n c e .  The average s c o r e r a t i n g o f emotion-  a l a d a p t a t i o n based on items seven t o n i n e might thus be c o r r e l a t e d w i t h the average score o f items one t o t h r e e , and w i t h t h a t average s c o r e o f l e a r n i n g a d a p t a t i o n , items f o u r t o s i x . S o c i a l a d a p t a t i o n may  be r a t e d s i m i l a r l y , both e x c l u s i v e and i n -  c l u s i v e o f the home environment,  and c o r r e l a t e d r e s p e c t i v e l y with  the f o r e g o i n g areas o f a d a p t a t i o n . I t s h o u l d be p o i n t e d out t h a t a d i a g n o s t i c  assessment  f o r an i n d i v i d u a l f a m i l y i s not encumbent on the data b e i n g c o r r e l a t e d i n accordance w i t h the above r a t i n g scheme. l e s s , such a d e v i c e may  prove u s e f u l f o r subsequent  Nevertheexploratory  research. The schedules may  i n a d d i t i o n serve as an e v a l u a t i v e  instrument to measure progress i n casework treatment. approach t o t h a t o f t h e Hunt-Kogan study might be T h i s was  A similar  undertaken.  a p i o n e e r i n g r e s e a r c h p r o j e c t i n the e v a l u a t i o n o f case-  work s e r v i c e s f o r the i n d i v i d u a l c l i e n t .  The schedules were  d i v i d e d a c c o r d i n g t o " a d a p t i v e e f f i c i e n c y , d i s a b l i n g h a b i t s and  55 conditions, verbalized attitudes and understanding, and environmental circumstances." 1  They were used i n the i n i t i a l  evalua-  t i o n , and reviewed at three month i n t e r v a l s to assess progress or regression i n the case. It i s only by means of systematic p r o f i l e that i t s v a l i d i t y i n diagnosis, can be established.  application of a  treatment and evaluation  The proposed design nevertheless  affords  a  comprehensive method of recording data s i g n i f i c a n t to the familycentered casework process i n the c l i n i c a l s e t t i n g .  As such i t  constitutes the framework for a diagnostic assessment upon which to structure the medical-social treatment plan.  That i s ,  the  areas contributing t o maladaptation might be i d e n t i f i e d , and subject to t h e i r r e l a t i v i t y to the t o t a l pattern, indicate areas appropriate to  subsequently  treatment.  Chapin, F . S . , review of a study by J. McV. Hunt and Leonard S. Kogan: "Measuring Results i n Social Casework: A Manual on Judging Movement," Social Work Journal, v o l . 32 (January 1951), p. 3#.  CHAPTER  THE  S O C I A L WORK C O N T R I B U T I O N  Social requires  a  The  the treatment  lies  t o help  members.  improve  the social  tation  about  The on  diagnosis dent  within  will  as developed  of diagnostic give  better  the social  contribution ways  t h e agency  effectiveness  on which  of coping  import.  study  member  to  functioning  fami-  of  their  or brain-injured involves with  interpre-  i t , and  services  propose  A family  however,  needed  are based problem.  criteria  assessment  t o t h e management  i s dependent  In a clinic,  of the medical-social  i n this  as a  and t h e community.  assessment.  medical-social  setting  "problem-solving  services  also  of the service  diagnostic  focus  clinical  worker  casework  of the disabled  the d i s a b i l i t y ,  on an e v a l u a t i o n  dules are  or restore  worker's  a comprehensive  of the social  i s t o provide  I n t h e management  both  SETTING  application of generic  contribution team  child,  resources,  IN A CLINICAL  work i n a m e d i c a l l y - o r i e n t e d  specialized  principles." of  IV  the  i s depenThe  a l l o f which  based  on  these  of the brain-injured  child. E.  Walkins  has d e f i n e d  sche-  psychosocial  diagnosis  as  ...the study and e v a l u a t i o n o f t h e i n n e r and o u t e r f o r c e s a f f e c t i n g t h e c h i l d and h i s f a m i l y . This would i n c l u d e not only a knowledge o f t h e p h y s i c a l involvement o f t h e handicap, but t h e meaning t h e handicap has f o r t h e p a t i e n t and h i s f a m i l y . It i n c l u d e s a s t u d y o f t h e s o c i a l s t r e s s e s w h i c h may be a f f e c t i n g t h i s f a m i l y , a s w e l l a s t h e r o l e played  57 by c u l t u r a l v a l u e s and economic f a c t o r s . B.K.  1  Simon suggests t h r e e f u r t h e r elements r e l e v a n t t o a  psychosocial  study:  a. The c u r r e n t , s p e c i f i c adaptive o p e r a t i o n s t h a t the p a t i e n t i s u s i n g to handle the s t r e s s . b. The c u r r e n t , s p e c i f i c i n d i c a t i o n s o f the p a t i e n t ' s potential for relationship. c. Current resources w i t h i n the p a t i e n t and h i s environment t h a t may be c a l l e d upon t o c o n t r i b u t e t o the s o l u t i o n o f h i s p r o b l e m s . 2  The  s o c i a l worker's p r e l i m i n a r y d i a g n o s i s moreover i s not  s t a t i c or f i n a l f o r m u l a t i o n . as a d d i t i o n a l data are The  clinic  I t must be  expanded and  a  revised  received.  s o c i a l worker, u s i n g the casework method,  endeavours t o h e l p r e s t o r e parents'  adaptive  mechanisms by  e n a b l i n g them t o d i s c u s s t h e i r f e e l i n g s of disappointment, f r u s t r a t i o n , and faction.  guilt,  Of f i r s t  as w e l l as those o f p r i d e , and  satis-  importance i n t h i s process i s t h a t the worker  a s c e r t a i n the degree o f understanding t h e parents have w i t h r e gard t o the reason f o r the r e f e r r a l , how  i t was  they took i n i t , and what t h e i r e x p e c t a t i o n s the t o t a l program and  a r e i n respect  the worker's r o l e i n i t .  t i c u l a r l y relevant i n c l i n i c a l  made, what part to  T h i s i s par-  s e t t i n g s where the f o c u s  i s on  the c h i l d i n the r e f e r r a l , but where the main d i f f i c u l t y may l i e i n the f a m i l y ' s a t t i t u d e and u n d e r s t a n d i n g .  Parents,  over, need o p p o r t u n i t i e s t o express t h e i r f e e l i n g s  yet  more-  concerning  W a l k i n s , E l i z a b e t h L., "Community Programs f o r C h i l d r e n w i t h M u l t i p l e Handicaps: The C o n t r i b u t i o n of the S o c i a l Worker," Prevention and Management of Handicapping C o n d i t i o n s i n Infancy and Childhood, I n s t i t u t e sponsored by t h e U n i v e r s i t y o f Michigan School of P u b l i c H e a l t h (November 1959), p. $4. 1  Simon, Bernece K . , " R e l a t i o n s h i p Between Theory and P r a c t i c e i n S o c i a l Casework," S o c i a l Work P r a c t i c e i n M e d i c a l C a r e a n d Reh a b i l i t a t i o n S e t t i n g s , Monograph IV, N a t i o n a l A s s o c i a t i o n of S o c i a l Workers, New York, I960, p. 16. 2  58 previous experiences related t o the c h i l d ' s problem.  Their  contacts with other team members during the i n i t i a l phase gives them a broader understanding on which to base t h e i r own conclusions.  During t h i s process, the s o c i a l worker i s able to  determine how the parents have adapted to situations  i n the  past, and i n l i g h t of t h e i r present l e v e l s of s o c i a l functioning gain insight into t h e i r capacity to respond t o treatment.  structured  Miss Simon's comments i n t h i s connection apply  equally to parents or patient: The patient's r e a l i t y - t e s t i n g capacity, his judgement, and his i n t e l l e c t u a l a b i l i t y are observed and assessed from both the substance and the manner of his presentation. We assess these personality functions and c h a r a c t e r i s t i c s by the apparent relevance, coherence, and l o g i c i n the patient's presentation. The s o c i a l worker's r e c i p r o c a l response i n acknowledging and accepting the parents'  degree of stress, i s a decisive  factor i n determining the establishment of a sound r e l a t i o n s h i p . S t i l l following Miss Simon's exposition, The diagnostic and therapeutic problem for the worker i s the i d e n t i f i c a t i o n , establishment, and sustaining of the kind of r e l a t i o n s h i p that the patient needs and can use for the solution of h i s problems. 2 The worker furthermore aids parents to i d e n t i f y and different i a t e t h i s r e l a t i o n s h i p from other helping r e l a t i o n s h i p s . The treatment plan proposed by the s o c i a l worker must  I b i d . , p. 17. 2  I b i d . , p. 39.  59 focus on a s p e c i f i c goal or termination point.  While t h i s goal  may be f l e x i b l e , i t nevertheless plays an important part i n judging the effectiveness  of the service.  It must also be  understood by the c l i e n t that treatment may be resumed at a l a t e r period should the s i t u a t i o n warrant.  During the treat-  ment period, by encouraging parents of a disabled c h i l d to part i c i p a t e i n planning, they are helped to reach a firm understanding of the c h i l d ' s needs r e l a t i v e t o his condition.  Where  attitudes impede appropriate planning, they may be guided to recognize and accept t h e i r f a i l u r e s as well as t h e i r successes, to substitute new patterns of adaptive response, and to set r e a l i s t i c goals. This l e v e l of service i s a demanding one i n terms of casework s k i l l ;  the degree of efficiency must to some extent be  measured against the size of caseloads, and the number of s o c i a l work staff  i n r e l a t i o n to agency time.  A d d i t i o n a l l y , the arrange-  ment of s t a f f i n g w i l l vary depending on the orientation of the agency i n the recognition of the primary factors impinging upon the c h i l d ' s satisfactory h a b i l i t a t i o n .  These may be perceived  as s o c i a l , emotional, developmental, or p h y s i c a l . Of course when there are several members of a team, the primary therapeutic r e l a t i o n s h i p with parents or c h i l d i s not necessarily assumed by the s o c i a l worker.  For that matter,  not a l l families w i l l require the same range, or degree of treatment.  However, i t i s essential to gain an understanding  of the problem as soon as possible i n the i n i t i a l period. worker's s k i l l i n diagnostic assessment thereby becomes  The  60 i n d i s p e n s a b l e not only i n d e t e r m i n i n g t h e needs o f c h i l d and parent, but i n h e l p i n g t o p e r c e i v e which i s t h e most appropr i a t e team member t o assume t h e main r e s p o n s i b i l i t y f o r therapy. In t h e words o f W.T.  Hall,  ...the s o c i a l worker must, through h i s own s e n s i t i v i t y t o t h e needs, d e s i r e s , and m o t i v a t i o n s o f t h i s p a t i e n t and f a m i l y , and through h i s knowledge o f the environmental s t r e s s e s which may be o p e r a t i n g i n a p a r t i c u l a r s i t u a t i o n , h e l p each team member t o understand, and t o r e a l i z e t h e importance o f understanding, why t h i s i n d i v i d u a l and t h i s p a r t i c u l a r parent a r e behaving t h e way they d o . 1  T h i s then i s r e l e v a n t whether or not t h e s o c i a l worker undertakes  t o t r e a t t h e c h i l d or f a m i l y .  Dependent on t h e  i n d i v i d u a l s i t u a t i o n , the p r i o r i t y s e l e c t i o n of a given t r e a t ment procedure a t any one time may be determined  by t h e area  of urgency, whether p h y s i c a l , s o c i a l , o r emotional.  In many  cases, a d m i t t e d l y , these a r e o f e q u a l concern; n o n e t h e l e s s , i t i s here t h a t f l e x i b i l i t y and c l a r i t y o f r o l e i n team o r g a n i z a tion i s essential.  Furthermore,  when circumstances  m o d i f i c a t i o n i n t h e o r i g i n a l treatment taken.  warrant,  s t r u c t u r e must be under-  The s o c i a l worker should be i n a p o s i t i o n t o e v a l u a t e  f a c t o r s which w i l l h e l p o r h i n d e r i t s a d o p t i o n . The most important member o f t h e team, i t must be remembered, i s t h e c h i l d .  Whether he has a b r a i n i n j u r y or  other d i s a b i l i t y , h i s emotional p a r t i c i p a t i o n i s o f f i r s t  H a l l , Wm. T., "The S o c i a l Worker i n a Community Hearing Program," P r e v e n t i o n and Management o f Handicapping C o n d i t i o n s i n Infancy and Childhood, I n s t i t u t e sponsored by t h e U n i v e r s i t y o f Michigan School o f P u b l i c H e a l t h (November 1959), p. 123.  61  importance i f his functional or i n t e l l e c t u a l p a r t i c i p a t i o n i s to be assured.  In a diagnostic formulation based on the pro-  posed schedules, the s o c i a l worker should be able to identifysome of the symptoms contributing to the c h i l d ' s s o c i a l dysfunctioning.  The resolution of such maladaptation does not  necessarily concern parental a t t i t u d e s .  It may require modi-  f i c a t i o n of attitudes on the part of any adult occupying a s i g n i f i c a n t position i n the c h i l d ' s environment.  Direct treatment  of the c h i l d may i n addition involve s o c i a l stimulation within a peer group; or the opportunity to express anxieties and f e e l ings within a casework or play therapy s i t u a t i o n . It i s t r a d i t i o n a l and s t i l l very common to think i n terms of the disabled c h i l d ' s physical treatment, yet his emotional treatment needs equal consideration.  socio-  Medical specia-  l i s t s repeatedly i n f e r t h i s i n t h e i r writings, and i n addition corroborate the significance  of environmental a t t i t u d e s .  An  orthopedic surgeon has observed some of the s o c i a l and emotional symptoms creating obstacles to f u n c t i o n a l improvement of the disabled c h i l d ; namely, those of anxiety, overprotection, rej e c t i o n , and s o c i a l p r i v a t i o n .  He comments,  . . . t h e r e i s no r e a l s p e c i f i c i t y between the cause of the handicap and the nature of the emotional d e f e c t . . . . I t i s more a question of the degree and quality of the handicap and the nature of the , environment or the atmosphere that surrounds i t . It may furthermore be stated that regardless of the  Cooper, W., M . D . , "The Emotional Problems of the Physically Handicapped C h i l d , " Emotional Problems of Childhood, ed. Liebman, S., J.B. Lippincott C o . , 1958, p. 150.  62 l e v e l of proficiency i n functional a b i l i t y , a d i s i l l u s i o n e d or demanding c h i l d may become an embittered or s o c i a l l y adult.  rejected  According t o another source,  . . . t h e extent to which a c h i l d i s handicapped depends more on his feelings than on the nature or degree of the handicap i t s e l f , and that the most important single factor determining the attitude of a c h i l d toward his handicap i s the attitude of his parents. This statement carries greater impact than i s at f i r s t  apparent.  As already suggested, the attitude of parents i s often a mirror of the s o c i o - c u l t u r a l attitude.  This i n turn then i s no less  profoundly shaped by the attitudes of the people representing the professional d i s c i p l i n e s closely involved i n the problem. Thus, whether or not parents are included consciously as an i n t e g r a l part of the "team", professional people have a r e s p o n s i b i l i t y to acknowledge the parents'  problem and to offer  honest, candid, and constructive guidance and support.  They  also have a r e s p o n s i b i l i t y to reappraise the services they provide.  Practice does not axiomatically i n f e r competence.  In-  deed, the r e a l handicap of multiple disabled c h i l d r e n , i t has been said,  "may be our ignorance of what i s wrong with them and 2  what to do about i t . " It has been furthermore observed that: The success of management i s assured only when the c h i l d arrives at maturity with confidence and maximal a b i l i t y to compete. This, we believe depends upon the emotional s t a b i l i t y of the parents  Services for Handicapped Children, Prepared by the Committee on Child Health of the American Public Health Association, American Public Health Association I n c . , New York, 1955, p. 4 9 . M i l l e r , C . A . , "Health Needs of Children with Multiple Handicaps," Prevention and Management of Handicapping Conditions i n Infancy and Childhood, Institute sponsored by the University of Michigan School of Public Health (November 1 9 5 9 ) , p. 7 0 . 2  63 and t h e c h i l d f u l l y as much as i t does on motor competence. Agency and Community The  Responsibilities  o b j e c t i v e toward which the C e r e b r a l P a l s y program  a s p i r e s f o r each c h i l d i s t h a t he gain p h y s i c a l and emotional independence, and thereby a c h i e v e e a r l y i n t e g r a t i o n w i t h i n h i s peer groups i n the community.  There a r e here however t h r e e  i n t e r r e l a t e d f a c e t s t o c o n s i d e r : the s o c i o - e m o t i o n a l , t h e p h y s i c a l , and t h e i n t e l l e c t u a l . With r e g a r d t o t h e f i r s t , tance o f a evident.  t h e impor-  p s y c h o s o c i a l d i a g n o s i s i n t h i s s e t t i n g must now be • Such an assessment based on the proposed schedules i n  Appendix C, t o g e t h e r w i t h an understanding  o f t h e d i a g n o s t i c and  prognostic i m p l i c a t i o n s of the b r a i n - i n j u r e d c h i l d ' s p h y s i c a l c o n d i t i o n , w i l l e s t a b l i s h a framework f o r p l a n n i n g and treatment. From the p h y s i c a l aspect, some c h i l d r e n may reach a stage o f independence e a r l y ; others w i l l remain dependent f o r life;  still  others w i l l g a i n only p a r t i a l independence.  i n t h i s respect that a r e a l i s t i c treatment  It i s  outlook on t h e p a r t o f t h e  s t a f f i s imperative i f t h e c h i l d i s t o gain  emotional  independence, and i f the parents are t o be helped t o r e c o g n i z e the c h i l d ' s l i m i t a t i o n s as w e l l as the l i m i t a t i o n s i n the s o c i a l s t r u c t u r e o f t h e community.  The a p p r o p r i a t e i n t e g r a t i o n o f t h e  i n t e l l i g e n t c h i l d with a severe p h y s i c a l d i s a b i l i t y i s a c a r d i n a l p o i n t here. as y e t inadequate  T h i s i s an area where community p l a n n i n g i s t o t h e need.  For those c h i l d r e n who do reach a l e v e l o f independence,  C r o t h e r s , Bronson, and Paine, R.S., The N a t u r a l H i s t o r y o f C e r e b r a l P a l s y , Harvard U n i v e r s i t y Press, Cambridge, 1959, p. 285.  64 t h e i r integration within the s o c i a l structure interpretation to the community.  necessitates  Many i n t e l l e c t u a l l y bright  children with physical d i s a b i l i t y are,  primarily due to ignorance,  regarded i n t e l l e c t u a l l y as less than normal, or as objects of pity.  Fear for the c h i l d ' s safety i s expressed again and again,  p a r t i c u l a r l y by teachers, who are generally the f i r s t  people i n  the community with whom the c h i l d has a sustained r e l a t i o n s h i p . Many teachers have exhibited s e n s i t i v e understanding, but many others need to gain a more enlightened attitude toward these c h i l dren.  The disabled c h i l d needs encouragement to participate i n  activities,  yet he needs at the same time to develop an awareness  of his own l i m i t a t i o n s .  This conversely involves a recognition  by the teacher of his l i m i t e d capacities. imply that he should receive preferential  It however does not discipline.  This agency furthermore, i s concerned with the whole family, wherever m a r i t a l , f i n a n c i a l , or s o c i a l problems are suspected as being i n t r i c a t e l y related to the c h i l d ' s condition. The extent of t h i s r e l a t i o n s h i p can only be i d e n t i f i e d by a caref u l diagnostic  assessment by the s o c i a l worker, which again can  be formulated according to the suggested l e v e l s of adaptation environmental stress. to effective cies.  A s o c i a l diagnosis moreover, i s  to  tantamount  interpretation and r e f e r r a l to other community agen-  The l a t t e r would apply when family d i f f i c u l t i e s  either do  not have direct bearing on the c h i l d ' s problem, or when they may be more appropriately treated i n a different  setting.  No h a b i l i t a t i v e program, can be c a r r i e d out  effectively  without an awareness and u t i l i z a t i o n of community resources.  65 This necessitates a r e c i p r o c a l understanding of the nature of the services provided by any one agency.  Interpretation must  thereby involve the s o c i a l worker i n the role of consultant both within and external to the agency.  According to the  National Association of Social Workers, Consultation contributes the expert knowledge and judgement of the medical s o c i a l worker regarding the psychosocial factors which influence needs and treatment of i n d i v i d u a l patients to the medical and paramedical personnel giving the service on the program, to the administrative s t a f f , and to s t a f f of other agencies p a r t i c i p a t i n g i n the provision of services to i t s patients.1 Consultant service then applies to the immediate  intra-agency  community as w e l l as to the province-wide community.  The fact  must not be overlooked that there are many r u r a l , and other urban communities where no s p e c i a l treatment  facilities  available for the c h i l d with brain injury or cerebral  are palsy.  This i n some respects places an even greater degree of respons i b i l i t y on the community.  Dependent on the i n d i v i d u a l circum-  stances, the l o c a l public health department,  public or private  s o c i a l agency, or the family doctor may be approached to assume the primary relationship with the family. h a b i l i t a t i o n i s to f a c i l i t a t e  As the goal of  the c h i l d ' s and f a m i l y ' s  social  functioning and independence, i t i s only by a recognition and acceptance of t h i s r e s p o n s i b i l i t y that they can be assured of  Report of a Conference Sponsored by the Medical S o c i a l D i v i s i o n of the National Foundation for Infantile Paralysis, Medical S o c i a l Work Preparation and Performance, New York, March 3-7, 1957, p. 49.  66 integration within t h e i r own environment. This nevertheless  poses the question of leadership  i n the whole area of h a b i l i t a t i o n and r e h a b i l i t a t i o n of disabled children.  In the community where a health agency such as that  under discussion i s established,  an i n t e r d i s c i p l i n a r y consul-  t a t i v e service should be provided on a province-wide basis, and support assured medical and s o c i a l agencies when the needs demand.  In t h i s respect then, the program carries a further res-  p o n s i b i l i t y to i n i t i a t e planning for more effective when these become inadequate to meet the demand.  services  Dr. Wishik  states s i g n i f i c a n t l y , Two common and unfortunate tendencies i n the development of new services are f i r s t , to establish a completely new service apart from any e x i s t i n g ones, and second, to set up a specialized service for one or another diagnostic group or condition. . . . I n d i v i d u a l s and organizations should focus on the needs of children as a t o t a l group rather than on one or another s p e c i f i c condition handicapping some c h i l d r e n . 1 Another writer comments: In great part, the snobbishness that the parents of a handicapped c h i l d may f e e l concerning one handicap versus another has grown out of the professional attitude of the trained personnel connected with the various a g e n c i e s . 2 . . . W i t h o u t a f e e l i n g of pride i n t h e i r c h i l d or hope of promise they become disorganized, and often misunderstood and misdirected.3> Dr. Deaver, s a t i r i c a l l y at f i r s t ,  sums up the discussion:  -•-Wishik, Samuel M . , M . D . , "The Role of the P h y s i c i a n , " The Child with a Handicap, ed. E . E . Martmer, C C . Thomas, Springf i e l d , 1959, P. 9. 2 Hood, Oreste E . , Your Child or Mine, Harper and Bros., New York, 1957, p. 42. 3  Ibid.,  p. 171.  6  7  Pity the youngster with a d i s a b i l i t y for which no organization has yet been founded 1 I f we consider rather t h e i r common d i s a b i l i t i e s , i t i s evident that they can a l l be handled t o gether to great advantage. 1 In consideration of the family's adequacy of s o c i a l functioning, the s o c i a l worker has a primary r e s p o n s i b i l i t y to define the need and participate  i n the i n i t i a t i o n and develop2  ment of resources appropriate to t h i s need. "program consultation", a professional  This refers to  function described as  that which ...makes available the expert knowledge and s k i l l of the medical s o c i a l worker to s o c i a l workers, members of other professions and d i s c i p l i n e s or appropriate community persons, groups, or organizations, i n t h e i r assessment of the need for, or the development, reorganization,•or maintenance of, various programs i n which the medical-social needs of patients or potential patients are an important f a c t o r . 3 The writer thus firmly believes that i n order to avoid the p o s s i b i l i t y of a d d i t i o n a l , segmented services developing, the Cerebral Palsy Association treatment program presently establ i s h e d within a r e h a b i l i t a t i o n centre should be consciously and purposefully expanded to include a l l physically disabled c h i l d r e n , i n c l u s i v e of the brain-injured c h i l d whether or not a physical d i s a b i l i t y i s  apparent.  -•-Bluestone, S.S., M . D . , and Deaver, G . G . , M.D., "Rehabilitation of the Handicapped C h i l d , " Pediatrics.(May p. 1  9  5  5  )  ,  6  3  4  .  2  C o c k e r i l l , E . , and Gossett, H . , The Medical Social Worker as Mental Health Worker, National Association of Social Workers, New York, 1 9 5 9 , p. 1 1 . 3 R e p o r t of a Conference Sponsored by the Medical Social D i v i s i o n of the National Foundation for Infantile Paralysis, Medical S o c i a l Work Preparation and Performance, New York, March 3 - 7 , 1 9 5 7 , p. 5 1 .  68  Community resources f o r the mentally disabled are expanding, nevertheless r e c i p r o c a l treatment and consultative services  should be available because of the frequent combina-  t i o n of physical and mental problems.  This applies  particu-  l a r l y when apparent mental retardation of a physically normal c h i l d i s considered attributable t o a perceptual problem as a result of a b r a i n - i n j u r y .  In addition, the community must be  given a clear interpretation of the range of the program. Furthermore, t h i s agency should provide leadership i n the area of services  for disabled children by p a r t i c i p a t i o n i n the c o l -  laborative development of existing r e l a t e d  services.  Future Research In comparison with other s o c i a l and medical sciences, s o c i a l work research i s largely experimental.  Dr. L . L . Geismar  puts the point t h i s way: Social work research has not attained the stage where i t can b u i l d i t s theory on the basis of comparing results among related and converging f i e l d studies. In order t o make experiment possible, available.  however, data must be made  In order to gain knowledge about family and s o c i a l  functioning, new methods of recording and appraisal must be sought and applied. work be evaluated,  Only i n t h i s way too can results of caseand the service subsequently improved.  Again,  Dr. Geismar comments:  Geismar, L . L . and Ayres, B . , -'Patterns of Change i n Problem Families, Family Centered Project, Greater St. Paul Community Chest and Councils, I n c . , St. Paul (July 1959), p. 28.  69 A fundamental question to be asked about any program of cure, therapy, r e h a b i l i t a t i o n , etc. i s whether i t had a l a s t i n g e f f e c t . Any reh a b i l i t a t i v e program which serves only as a temporary prop has not f u l f i l l e d i t s o v e r a l l purpose.1 The r e l i a b i l i t y and usefulness of the revised schedules as presented i n t h i s study can only be tested by systemat i c application associated with concise and accurate recording. The aim of the St.  Paul research project f o r example followed  two steps: ...1) the development of a r e l i a b l e method for appraising the behavior of multi-problem families; and 2) the a p p l i c a t i o n of t h i s method to a group of cases, so that the results obtained from 2 family centered treatment could be evaluated. It i s recommended therefore that the suggested p r o f i l e be adopted as a t o o l i n the assessment and treatment process withi n the agency to which the study pertains.  It i s evident more-  over that t h i s may be used profitably i n other agencies serving disabled children.  The selection of a limited group of cases  for the purpose of t e s t i n g r e l i a b i l i t y of the proposed design would not overtax the present caseload commitments. An ensuing research project might e n t a i l a more obj e c t i v e s e l e c t i o n of cases according t o age,  diagnosis,  and  i n t e l l i g e n c e of the c h i l d ; and frequency or consistency and nature of treatment of both c h i l d and parents.  It would be of  further value t o e l i c i t verbal responses of parents and children i n a controlled study of t h e i r attitudes and f e e l i n g s .  •'-Ibid. , p. 17. 2  I b i d . , p. 1.  They  70 might then be compared with the recorded material i n d i c a t i v e of l e v e l s of s o c i a l functioning. Not every c l i n i c a l setting has t o t a l l y accepted work as having a contribution to make.  social  It more urgently there-  fore behooves the s o c i a l worker within such a setting to demonstrate i n a p r a c t i c a l yet purposeful way what can be offered i n aiding diagnosis and treatment, ality differentials, sources generally.  drawing from the areas of person-  family d i f f e r e n t i a l s ,  and community re-  In consideration of the findings i n t h i s and  other studies, i t i s apparent that the c h i l d ' s adaptation to h i s d i s a b i l i t y i s dependent on the family's understanding and acceptance of the problem.  The importance of the s o c i a l worker's  contribution i s therefore  clear.  The St. Paul study confirms that research i n s o c i a l work can be r e l i a b l e provided the method i s sound.  Nevertheless,  Dr. Geismar has pertinently observed that The s o c i a l and psychological sciences are s t i l l i n a state of r e l a t i v e infancy when i t comes to providing a complete and coherent picture of the behavior of man and the changes i n h i s behavior. The supporting s o c i a l sciences s t i l l therefore have a long way to go, but as long as the s o c i a l work contribution i s qualitative,  i t w i l l s i g n i f i c a n t l y affect the understanding of  the behaviour of man.  ^ I b i d . , p. 7.  71 Appendix A Schedule 1.  Suggested C r i t e r i a for Evaluation of Emotional and Social Adjustment Explanation of Ratings  Criteria Good  Fair  Poor  1. Physical Development  Healthy,normally developing c h i l d . No serious i l l ness.  Healthy c h i l d . Slow physical deNormal developvelopment due to ment once i n t e r frequent i l l n e s s , rupted by serious or several i n c i illness;or,physidents of severe c a l development illness;or,ims l i g h t l y retarded, pairing d i s a b i l i t y other than hearing l o s s .  2. General Intelligence (a)  (superior)  (average)  ( d u l l normal,or s l i g h t l y retarded) .  3 . Mental Alertness  Bright,active, quick,understandi n g . A b i l i t y to adjust e a s i l y to new s i t u a t i o n .  Alert c h i l d , b u t easily frustrat e d ; o r somewhat slow i n adjusting to new situations.  Dull,slow i n response and understanding;or,withdrawn and daydreaming.  4. Emotional Development  Well balanced, contented and relaxed. Acts his age.  Easily frustrated,regresses when faced with new and d i f f i c u l t experience,short concentration span.  Very immature;or, shows symptoms of emotional disturbance.  5. SelfAssurance  Independent,secure i n r e l a t i o n ships,trusting. Persistent and goal directed when t r y i n g to perform set task.  Easily frustrated,demanding and attention seeking, whiny;or,shy and self-conscious.  Overly dependent and c l i n g i n g , Extremely shy and anxiousjdist r u s t f u l and fearful i n relationships.  (a) Determined on the basis of tests administered by the Metropolitan Health Committee.  72 Schedule 1. continued  Explanation of Ratings  Criteria Good  Fair  Poor  6. Self Control  Relaxed and secure i n r e l a t i o n ships,able to postpone immediate wish f u l f i l l m e n t ; able to accept limits.  Temper tantrums when frustrated, but does not present serious behaviour problem; or,too controlled due to fear.  Severe temper tantrums on slightest occasion; completely uncontrolled and uncontrollable; destructive; or, r i g i d s e l f cont r o l , severe withdrawal.  7. Happiness  Happy,friendly, outgoing and trusting child.  Changing moods; often whiny and dissatisfied,or stubborn and defiant.  Negativistic and hostile;or,extremely withdrawn and unresponsive.  £ . Relationship with Mother  Warm and relaxed. Feels loved and wanted;responds with love and affection.  Shows not too much spontaneity in relationship with mother;or, demanding;constantly attention seeking.  Negativistic and resentful toward mother,or withdrawn . C omplet e lack of communication, warmth, and understanding between mother and c h i l d .  9. Relationship with Siblings  Mutual acceptance and affection; f e e l i n g of belonging together.  Ambivalence expressed by either reaction format i o n , or by resentment a l t e r n a t i n g with acceptance and tolerance.  Extreme s i b l i n g rivalry.Jealous and deeply resentful. Constantl y competing f o r parents' attention.  10. A b i l i t y to r e l a t e to other Children  Outgoing and f r i e n d l y with children;relates easily.Coopera-: t i v e i n play and sharing.Assumes leadership r o l e , but able to accept leadership of others.  Quarrelsome,does not l i k e to share; or,shy,slow i n making f r i e n d ships, only able to r e l a t e to small group of children.  Hostile,aggress i v e , and disturbing i n play with other children. Likes to attack younger children; or,unable to est a b l i s h rapport with children; fearful.withdrawn  73  Schedule 1. continued  Explanation of Ratings  Criteria Good  Fair  Poor  11. A b i l i t y to relate to Strangers  Trusting,outShy and i n h i b i t e d , going c h i l d , f r i e n d - o r resentful,but l y , e a s i l y reable to relate l a t i n g to gradually i f strangers. shown continuing f r i e n d l i n e s s and interest.  Negativistic and h o s t i l e toward strangers; or,withdrawn i n presence of strangers.  12. Response to S o c i a l Stimulation  Outgoing and Shy,but interest friendly;relates and attention can quickly to new en- be aroused. vironment and new experiences.  Remains negativ i s t i c and withdrawn,unable to r e l a t e to his environment.  13. Cooperation (Clinic)  Very cooperative, eager to please, trusting,  I n i t i a l resentment or shyness; cooperates f a i r l y well after becoming f a m i l i a r with c l i n i c and clinic staff.  Extremely uncooperative,resentful and h o s t i l e ; o r withdrawn.  14. W i l l i n g ness to learr (New Experiences )  Eager to learn; to explore; curious and inquisitive.  Slow or inconsistent i n response to learning experience;easily distracted or frustrated.  Completely unresponsive;no motivation to gain new experiences.  Appendix A Schedule 2.  74 Suggested C r i t e r i a for Assessment of the Family  Explanation of Ratings  Criteria Good  Fair  Poor  $4800. - or more, steady income.  $2400. to |4800.  Less than $2400., i n receipt of Social Assistance, or Unemployment Insurance. Living on marginal income.  2. Employment  Good work record. Permanent employment with possib i l i t i e s for advancement.  Employed, but employment subject to change, depending on general employment s i t u a t i o n .  Unemployed;seasonal employment only;poor work record.  3 . Housing  Comfortable, spacious home.  Adequate from hygienic,although not from aesthetic point of view.Does not allow for too much privacy.  Crowded and inadequate l i v i n g quarters.  4. Education  College - or university education.  High school graduate.  P a r t i a l high school education or l e s s .  5. Socioeconomic Status  High standard of living,recognized s o c i a l position.  Living i n f a i r l y Low-status occucomfortable c i r pation,low i n cumstances.White come,limited c o l l a r occupation, p o s s i b i l i t i e s for advancement.  6. M a r i t a l Relations  Harmonious,happy marriage,mutual affection and respect,sharing of i n t e r e s t s , goals,and responsibilities.  Some evidence of marital c o n f l i c t , spouses do not always pursue same goals,or share responsibilities equally.  1.  Income  Gross disharmony between spouses, serious lack of c ommuni c at i on and understanding; constant quarrels or complete i n d i f ferenc e.  75 Schedule 2. continued  Explanation of Ratings  Criteria Good  Fair  Poor  7. F i n a n c i a l Management  Both partners plan and manage wisely within given budget, without being compulsive or excessively worried about f i n a n c i a l affairs.  Inconsistent handl i n g of money;fair amount of debts; or, too r i g i d and preoccupied with financial matters.  Heavy debts, chaotic household management, unable to plan within l i m i t s of given income.  £ . Social Handicaps  No s o c i a l problems .Harmonious, sound, stable family.  S o c i a l problems i n one or more areas of l i v i n g , but these are recognized and t r i e d to overcome.  Gross s o c i a l pathology i n one or more areas of living.Limited insight.  9. Family Stability  Closely k n i t , warm family unit,  Family able to A multitude of maintain s t a b i l i t y , problems a r i s i n g but tends t o , o r as a result of may, break down family i n s t a b i under severe l i t y ; lack of s t r e s s ; o r stacooperation betb i l i t y only main- ween members. tained through conscious effort of one marital partner.  10. MotherChild Relationship  Warm and close, c h i l d receives s t a b i l i t y and s e c u r i t y , i s loved and wanted.  Ambivalent f e e l Poor.Lack of ings toward c h i l d ; warmth and underinconsistent standing.Child handling. regarded as a burden.  11. FatherChild Relationship  Warm and close, c h i l d receives s t a b i l i t y and sec u r i t y , i s loved and wanted.  Ambivalent f e e l Poor. Lack of ings toward c h i l d ; warmth and underinconsistent standing. Child handling. regarded as a burden.  76  Schedule 2. continued  Explanation of Ratings  Criteria Good  Fair  Poor  12. Acceptance of Handicap  Complete acceptance of c h i l d and h i s handicap. Handicap regarded as a challenge.  Ambivalence,expressed by denial of handicap;excessive demands on c h i l d ; o v e r critical attitude; overprotection.  Actual and overt rejection,neglect or,obscessional, smothering oversolicitude.  13. Insight into C h i l d ' s Needs  Child regarded as "child" first,and needs met with love and understanding.  Inconsistency i n meeting c h i l d ' s needs. Not too c l e a r understanding of parental role.  Physical or emot i o n a l neglect, rejection;or, maltreatment;or, grossly overprotective.  14. Handling of Child (Discipline)  Sound and loving, consistency i n setting l i m i t s .  Inconsistent and erratic a l t e r n a t ing between harsh d i s c i p l i n e and overpermissiveness.  Overly harsh } punitive attitude smothering and domineering overs o l i c i t u d e ; or complete i n difference.  15. Cooperat i o n with Clinic  Eager and w i l l i n g to use and accept help;conscious effort to follow suggestions; keeps appointments even under d i f f i c u l t phys i c a l conditions. Active p a r t i c i pation;  Disagrees e a s i l y , unable to tolerate inconveniences when attending c l i n i c , needs constant reassurance and support.  Rejects help offered;makes no effort to follow suggesti ons;withdraws c h i l d from treatment;or uses c l i n i c to s a t i s f y own needs.  16. Understanding of Treatment goals  F u l l understanding and appreciat i o n of treatment g o a l s . A l l help i s used i n a constructive way.  Has d i f f i c u l t i e s i n t e l l e c t u a l l y to grasp treatment objectives,but t r i e s to follow a l l suggestions; o r , f e e l s ambivalent about t r e a t ment goals.  Intellectually and emotionally unable to comprehend goals; or does not see necessity for treatment.  77  Appendix B Medical Assessment C r i t e r i a Schedule  Description  Criteria  1. Observed Progress (past two years)  2. Relative Progress i n Functional Ability (past two years)  A.  Good  B.  Satisfactory  C.  Slow  D.  Poor  AA.  As anticipated or better.  BB.  Some improvement, but not to l e v e l expected.  CC.  No improvement; or d e t e r i o r a t i o n .  78 Appendix G Schedule 1 .  Criteria  •P  •rl rH •H Xi  A Proposed Schedule f o r Rating Social Functioning of a Disabled Child J-  A  B  L. General iealth  Healthy c h i l d .  a. health below par; a.General health b. frequent colds; poor; c o n e serious i l l - b.frequent i l l ness i n past year, ness.  2. Physical development  Within normal limits.  S l i g h t l y abnormal: a. under-weight or height, or b. over-weight.  Poor development: grossly a. under-weight or height,or b. over-weight.  3 . General intelligence  Average or better.  High to low borderline.  a. Defective: moderate to severe retardation; or b. unable to determine.  !f. Learning capacity  Alert and quick i n understandi n g . Eager to l e a r n , explore. Good attention span.  a. Slow or inconsistent i n , u n derstanding and/ or i n response to learning situation; b. functions below tested a b i l i t y ; c. d i s t r a c t a b l e , short attention span.  a. Dull,unresponsive; b. lacks motivat i o n or understanding i n learning; c. inattentive.  C6  -P  ed "C  o  •H faO O rH O •H CQ >>  xi  5. Task per- Purposeful,goaldirected, persisformance tent; good concentration span,  a. Purposeless; a. Uncertainty of goal or purpose; b. lacks p e r s i s t ence, i n a b i l i t y b. d i s t r a c t a b l e , to concenshort concentrate. t r a t i o n span.  6 . Response to new experience  a. Slow to adjust; b. excitable.  Adjusts well to new experience or change i n routine or program.  For r a t i n g method see Chapter  III.  a. Regresses when faced with new experience; b. extreme excitability.  79  Schedule 1. continued  Criteria  B  7 . Emotional development (maturity)  Emotionally i n dependent and secure; confident; contented.  a. Anxi ous,needs reassurance; b. demanding and attentionseeking; c. shy and s e l f conscious; d. discontented.  Emotionally dependent and insecure: a. lacks c o n f i dence; b. extremely shy or anxious; c. i n d i f f e r e n t .  8. Selfcontrol << (response to rH discipline) cd  Relaxed;able to postpone wishfulfilment ; able to accept limits.  a. S u l l e n , c r y i n g , or mild temper tantrums when frustrated or l i m i t s set; b. changing moods.  Unable to accept limits: a. destructive,or severe temper tantrums; b. r i g i d s e l f control.  Anxiety and/or frustration expressed.  a. Lacks awareness b. rejects disability.  H  -P •rl r-i •H ,0 cd  -P Pcd  C O •rl +3 O  9 . Attitude Expresses and to d i s a b i l i t y demonstrates awareness and acceptance.  +3 •rl  10. Relationship with mother  Warm and relaxed; Ambivalence: responds with l o v i n g and fearlove and affecing,or defying, tion.  11. Relationship with father  (as above)  •rl X> cd +3  ^.Relationship with cd s i b l i n g s TJ 13. Relationship with other children  a. Extreme r i v a l ry, or jealousy; b. overprotection.  Mutual acceptance and affect i o n ; independence encouraged.  Ambivalence expressed by prot e c t i o n or tolerance, and resentment.  a. F r i e n d l y , r e lates easily; b. cooperative i n play and sharing; c a b l e to accept leadership or assume leadership r o l e .  a. Shy,slow i n a.Hostile,aggresmaking friends; sive; b. quarrelsome; b.unable to esc o n l y able to re- t a b l i s h rapport l a t e to small with children; group of c h i l d - c . f e a r f u l , ren; withdrawn, d.may assume leadership, unable to tolerate that of others.  i—i  cd •rl O O CO  a. Negativistic and resentful; or b. withdrawn,lack of communication and warmth.  80  Schedule 1. continued  Criteria  A  B  C  a.Shy and i n hibited; b.attentionseeking and erratic.  a.Negativistic; b.withdrawn; c . d i s t r u s t f u l or fearful.  L5. Relation- Relates e a s i l y , ship to adult f r i e n d l y . strangers  (as above)  (as above)  L6. Relationship to familiar clinic staff  Cooperates gradually: a. maintains r e sentment or shyness; b. e r r a t i c and attentionseeking.  Extremely uncooperative: a.resentful and hostile; b.withdrawn.  Social Adaptability  14. Relation- Friendly, ship to fatrusting. m i l i a r adults i n neighbourhood  Cooperative, eager to please,  1  81 Appendix C Schedule 2. A Proposed Schedule f o r Rating S o c i a l Functioning of the Family of a Disabled Child  Socio-economic Status  Criteria  A  B  C  1. Health  Both parents healthy.  a.One parent poor a.Both parents general health; poor general b.constant conhealth; cern over b.one or both health. serious i l l n e s s i n past year.  2. Education (mother and father)  University, college, or professional t r a i n ing.  a.High school; b.vocational training.  a . P a r t i a l high school; b.grade 1-8.  3. Nature of employment (occupation) (mother and father)  a. Professional; b. managerial; c. semi-professional.  a.Skilled; b.clerical; c.sales.  a.Semi-skilled; b.unskilled; c.domestic service.  4 . Employment Regular employment. record (father;mother mother-designate i f breadwinner)  Employed, but a.Unemployed; a.subject to b.spasmodic change,st r i ke s; employment. b.seasonal.  5. Income  $4800.or more, steady income.  6. Housing  a. Family comfort- a.Some crowding; a.Inadequate ably accommob.some r e p a i r s , functionally dated,house i n facilities and physically good repair; needed; (overcrowded. b. good play s p a c e . c . r e s t r i c t e d play in disrepair); space. b.poor,or no play space.  7. Residential district  a. New developa.Moderate-cost a.Generally "runment area; homes; down" area; b. high-cost homes;b."older" b.shared units; good f a c i l i t i e s , neighbourhood; poor f a c i l i moderate-good ties, facilities; c.apartment area. 1  —  .,—  a.$2400.-$4800; b.variable i n come.  a.Under $2400; b.Unemployment Insurance; c.Social Assistance.  "  -  I  82  Schedule 2 . continued  Socio-Cultural Standards  Criteria  A  B  C  8 . Socioeconomic climate of home  Both parents content ;progressive,realistic planning.  One or both parents dissatisfied,but efforts to change.  9 . Financial management  Wise planning a.Planning imwithin given budpaired due to get,without medical being compulexpenses; s i v e , o r unduly b.inconsistent worried. handling of money; c. f a i r amount of debts; d. pre-occupied with f i n a n c i a l matters.  a.Poor f i n a n c i a l management-no budgeting; b.heavy debts.  1 0 . Marital relations  Harmonious,happy marriage;mutual affection and respect.  .Communication impaired: a.lack of understanding; b. constant quarrels; c. complete i n d i f ference.  1 1 . Role perception  Both parents ex- a.One parent a.Both parents press leadership accepted leader lack leadership; i n c l e a r l y dei n most areas; b.one authorifined or mutually b.some role t a r i a n to determined r o l e s . conflict. extreme; c.considerable role c o n f l i c t .  1 2 . Motherchild relationship  Warm and close; a.Anxious f e e l c h i l d ' s needs met ings about with love,underchild; standing and b.inconsistency consistency. i n meeting needs; c. u n r e a l i s t i c demands; d. overprotection.  1 3 . Fatherchild relationship  (as above)  Some evidence of c o n f l i c t , b u t not gross.  One or both i n different or d i s contented;unrealistic planning.  a.Lack of warmth, understanding; b.punitive; c.indifferent; d.grossly overprotective.  83  Schedule 2. continued  Criteria  B  11+. Attitude Realistic to d i s a b i l i t y recognition of (mother and limitations. father)  Difficulties in recognition of limitations.  15. Assessment Parents plan of c h i l d ' s r e a l i s t i c goals. future.  a. Over-anxious No planning for improvement; or goals. b. u n r e a l i s t i c goals; c. disagree on goals.  fl  •H -P fl O O  16. Parent participation CO i n treatment Ti U (mother and cO father) Ti fl CO* •P CO  rH cO  M +3 H O I o  L7. Understanding of o treatment CO goals  •H O  L8. E t h i c a l values (mother and father)  a. Rejection; b. conscious or unconscious physical or emotional neglect.  Cooperative,good relationship to s t a f f ; w i l l i n g to use and accept help; conscious effort to follow suggestions; keeps appointments.  a. Needs constant a. Rejects help reassurance b. makes no effort and support; to follow suggestions; b. disagrees placing f u l l easily; responsibility c. d i f f i c u l t y on staff; tolerating i n c. uses c l i n i c t o conveniences. s a t i s f y own needs; d. l i t t l e or no interest.  Understands and appreciates aims of treatment.  a.Has d i f f i c u l - a. Withdraws c h i l d from treatment; ties in grasping aims b. does not see necessity for or objectives. treatment.  Derived from bel i e f i n and adherence to a p a r t i c u l a r orthodox r e l i g i o u s syst em.  Derived from adherence to part i c u l a r system of ethics, or from unorthodox r e l i g i o u s system.  No adherence to or respect for any p a r t i c u l a r value system.  34 Schedule 2. continued  Criteria 19. Communitysocial activity  X! CD  ti  B Both parents "healthy" participation in church,club, school,recreat i o n a l , or other interest.  Hesitancy,or r e s t r i c t e d opport u n i t y f o r one or both t o part i c i p a t e due to a. finances; b. transportation; c. family t i e s .  Congenial neighbourhood; acceptable l i v i n g and ethnic or subc u l t u r a l standards as r e f l e c ted i n mutual respect.  Experience frus- Experience d i s crimination due t r a t i o n due t o : a. income or l i v - to a . , b . , c . ing standards; b. ethnic or c u l tural difference; c. presence and/or management of disabled c h i l d .  CS •H +3  O  o CQ -d  20. Sociocultural ti community ctJ CO attitudes U  ct5 x)  H COSH  ti  •P rH  ti I  O  o  •H O O CO  21. Family stability  One or both parents: a. disinterested or intolerant of a c t i v i t y outside immediate family; b. p a r t i c i p a t i o n i n outside act i v i t y to exclusion of family's interests.  Closely k n i t , a. S t a b i l i t y main- a. Family breaks warm family u n i t ; tained through down under a b i l i t y to handle effort of one stress; stress: moves, partner; b. multitude of death,interb. socio-economic socio-economic ference of r e l a problems may problems caust i v e s , and persist,but ing i n s t a b i l i others. not damaging. ty.  35 Appendix D.  BIBLIOGRAPHY  Books Barker, Roger G . , Wright, B . A . , and Gonick, M.R. Adjustment to Physical Handicap and I l l n e s s : A Survey of the Social Psychology of Physique and D i s a b i l i t y . Social Science Research Council, New York, 1953 (copyright 1946). B a r t l e t t , Harriett M. Some Aspects of Social Casework i n a Medical Setting. Prepared for the Committee on Functions, American Association of Social Workers, G. Banta, Chicago, 1940.  Bowley, Agatha. The Young Handicapped C h i l d . E. and S. Livingstone L t d . , Edinburgh and London, 1957. Crothers, Bronson, and Paine, R.S. The Natural History of Cerebral Palsy. Harvard University Press, Cambridge, 1959. Erikson, E . H . Childhood and Society. New York, ±9~W.  W.W. Norton and Co. I n c . ,  Fischer, C . C . , ed. Pediatric C l i n i c s of North America: Symposium on Handicaps and Their Prevention. W.B. Saunders Co., Philadelphia and London, August, 1957. French, David G. Measuring Results i n Social Work. University Press, New York, 1952. Hood, Oreste E . Your Child or Mine. New York, 1957^  Columbia  Harper and Brothers,  Lewis, Richard S., Strauss, A . A . , and Lehtinen, L . E . The Other C h i l d ; the Brain-Injured C h i l d , a Book for Parents and Laymen. Grune and Stratton, New York, 1951. Lord, Elizabeth Evans. Children Handicapped by Cerebral Palsy. H. M i l f o r d , Oxford University Press, London, 1937. Martmer, E . E . , ed. The Child with a Handicap. Springfield, 1 9 5 ^ Michael-Smith, H . , ed. Grune and Stratton,  C C . Thomas,  Management of the Handicapped C h i l d . New York, 1957.  Prevention and Management of Handicapping Conditions i n Infancy and Childhood. I n s t i t u t e sponsored by the University of Michigan School of Public Health, November 1959. Simmons, Leo W., and Wolff, Harold G. Social Science i n Medicine. Russell Sage Foundation, New York, 1954.  86 Strauss, A . A . , and Lehtinen, L . E . Psychopathology and Education of the Brain-In.jured C h i l d . Grune and Stratton, New York, 195F:  Witraer, H . L . , and Kotinsky, R., ed. Personality i n the Making. The Fact-Finding Report of the Midcentury White House Conference on Children and Youth, Harper and Brothers, New York, 1 9 5 2 . Pamphlets C o c k e r i l l , E . , and Gossett, H. The Medical Social Worker as Mental Health Worker. National Association of S o c i a l Workers, New York, 1959. F r a n k i e l , Rita V. A Review of Research on Parent Influences on Child Personality. Family Service Association of America, 1959. Geismar, L . L . and Ayres, B. Patterns of Change i n Problem Families. Family Centered Project, Greater St. Paul Community Chest and Councils, I n c . , St. Paul, July, 1959. Josselyn, Irene M . , M.D. Psychosocial Development of Children. Family Service Association of America, New York, I960, (copyright 1948). K r o l l , Frances. Children with Juvenile Rheumatoid A r t h r i t i s ; S o c i a l and Developmental Problems. A r t h r i t i s and Rheumatism Foundation, New York, 1958. Medical Social Work Preparation and Performance. Report of a Conference Sponsored by the Medical S o c i a l Division of the National Foundation for Infantile Paralysis. Harriman, New York, March 3-7, 1957. Services for Children with Cerebral Palsy, a Guide for Public Health Personnel, Prepared J o i n t l y by the Committee on Child Health of "the American Public Health Association and the American Academy for Cerebral Palsy, New York, 1955. Services for Handicapped Children. Prepared by the Committee on Child Health of the American Public Health Association, American Public Health Association I n c . , New York, 1955. Social Work Practice i n Medical Care and Rehabilitation Settings, Monograph I I . "Teamwork: Philosophy and P r i n c i p l e s . " National Association of Social Workers, Washington, July 1955. S o c i a l Work Practice i n Medical Care and Rehabilitation Settings, Monograph IV. "Relationship Between Theory and Practice i n Social Casework," National Association of Social Workers, New York, I960.  87  S o c i a l Work Practice i n Medical Care and Rehabilitation Settings, Monograph V. "Perception of Culture: Implications for Social Caseworkers i n Medical S e t t i n g s , " National Association of S o c i a l Workers, New York, I960. Towle, Charlotte. Common Human Needs. Social Workers. New York, 1953.  American Association of  Articles Baldwin, A . L . , Kalhorn, J . , and Breese, F . H . "The Appraisal of Parent Behavior." Psychological Monographs, v o l . 63 (1949), No. 4 (Whole No. 29T). Baldwin, A . L . "The Effect of Home Environment on Nursery School Behavior." Child Development, v o l . 20 (1949), pp. 49-61. Bluestone, S.S., M . D . , and Deaver, G . G . , M.D. "Rehabilitation of the Handicapped C h i l d . " P e d i a t r i c s , v o l . 15 (May 1955),  pp. 631-641.  Chapin, F . S . Review of a study by J. McV. Hunt and Leonard S. Kogan: "Measuring Results i n S o c i a l Casework: A Manual on Judging - Movement." Social Work Journal, v o l . 32 (January 1951), pp. 38-40.  C o c k e r i l l , Eleanor. "The Interdependence of the Professions i n Helping People." Social Casework, v o l . 34 (November 1953), pp.  371-378.  Cooper, W., M.D. "The Emotional Problems of the Physically Handicapped C h i l d . " Emotional Problems of Childhood, ed. Liebman, S., J . B . Lippincott Co. 1958, pp. 149-164. Elledge, Caroline. "The Medical Social Worker." The Handicapped and Their R e h a b i l i t a t i o n , ed. Harry A. Pattison, C C . Thomas, S p r i n g f i e l d , 111., 1957, pp. 414-426. Kozier, Ada. "Casework with Parents of Children Born with Severe Brain Defects." S o c i a l Casework, v o l . 38 ( A p r i l 1957), pp.  183-189.  Krupp, George R., M.D., and Schwartzberg, B. "The BrainInjured C h i l d : A Challenge to Social Workers." Social Casework, v o l . 41 (February I960), pp. 63-69. Lesser, Walter. "The Team Concept - A Dynamic Factor i n Treatment." Reprint from Journal of Psychiatric Social Work, vol.  24 (January 1955), pp. 119-126.  McCormick, Mary J . , Ph.D. "The Role of Values i n Social Functioning." Social Casework, v o l . 42 (February 1961), pp.  70-78.  88 McGuire, E l i z a b e t h T. " T h e . S o c i a l A d a p t a t i o n of M u l t i p l e Sclerosis Patients." Smith C o l l e g e S t u d i e s i n S o c i a l Work, v o l . 29 (June 1959), pp. 204-239. M u r s t e i n , Bernard I . "The E f f e c t o f Long-term I l l n e s s o f C h i l d r e n on t h e Emotional Adjustment of P a r e n t s . " Child Development. v o l . 3 1 (March I960), pp. 157-171. Neiman, L . J . , and Hughes, J.W. "The Problem of the Concept o f R o l e . " S o c i a l P e r s p e c t i v e s on Behavior, ed. H.D. S t e i n and R.A. Cloward, The Free Press, Glencoe, 1958, pp. 178-185. Parad, H.J., and Caplan, G. "A Framework f o r S t u d y i n g F a m i l i e s i n Crisis.',' S o c i a l Work, v o l . 5 ( J u l y I960), pp. 3-15Perutz, Lotte. "Treatment Teams at t h e James Jackson Putnam C h i l d r e n ' s C e n t e r . " Smith C o l l e g e S t u d i e s i n S o c i a l Work, v o l . 28 (October 1957), pp. 1-31. Schein, Edgar H. " I n t e r p e r s o n a l Communication, Group S o l i d a r i t y • and S o c i a l I n f l u e n c e . " Sociometry, v o l . 23 (June I960), pp. 148-161. S t e i n e r , Ivan D. "Human I n t e r a c t i o n and I n t e r p e r s o n a l P e r c e p t i o n . " Sociometry, v o l . 22 (September 1959), pp. 2 3 0 - 2 3 5 . Wallace, Helen M., M.D. "The Role of t h e S o c i a l Worker i n the R e h a b i l i t a t i o n o f t h e Handicapped." S o c i a l Casework, v o l . 38 (January 1957), pp. 15-22. Weisman, I . , and Chwast, Jacob, Ph.D. " C o n t r o l and Values i n S o c i a l Work Treatment." S o c i a l Casework, v o l . 41 (November I960), pp. 451-456": M i s c e l l a n e o u s Sources Ayres, B e v e r l y . The Family Centered P r o j e c t o f S t . P a u l, A S e r i e s o f Three Seminars on a Demonstration P r o j e c t with Multi-Problem F a m i l i e s . Community Chest and C o u n c i l s o f the G r e a t e r Vancouver Area, Vancouver ( A p r i l I960), (mimeographed). Beck, Bertram M. P r e v e n t i o n and Treatment. Based on t h e work of a Subcommittee, N a t i o n a l A s s o c i a t i o n of S o c i a l Workers N a t i o n a l Commission on S o c i a l Work P r a c t i c e , I960 (mimeographed). Davis, A l l i s o n . Socio-Economic I n f l u e n c e s Upon C h i l d r e n ' s Learning. Paper d e l i v e r e d at the Midcentury White House Conference on C h i l d r e n and Youth, Washington, D.C, 1950 (mimeographed). Varwig, Renate. Family C o n t r i b u t i o n s i n P r e - s c h o o l Treatment of the Hearing-Handicapped C h i l d . Master o f S o c i a l Work t h e s i s , U n i v e r s i t y o f B r i t i s h Columbia, I960.  

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