Attendant Care and Occupational Therapy

Transcription

1 Western Michigan University ScholarWorks at WMU Master's Theses Graduate College Attendant Care and Occupational Therapy Barbara Barrett Lucas Western Michigan University Follow this and additional works at: Part of the Rehabilitation and Therapy Commons Recommended Citation Lucas, Barbara Barrett, "Attendant Care and Occupational Therapy" (1984). Master's Theses This Masters Thesis-Open Access is brought to you for free and open access by the Graduate College at ScholarWorks at WMU. It has been accepted for inclusion in Master's Theses by an authorized administrator of ScholarWorks at WMU. For more information, please contact

2 ATTENDANT CARE AND OCCUPATIONAL THERAPY by B arb ara B a r r e t t Lucas A T h e s is S u b m itte d to th e F a c u lty o f The G ra d u a te C o lleg e in p a r t i a l f u l f i l l m e n t o f th e re q u ire m e n ts f o r th e D egree o f M aster o f S cien ce D epartm ent o f O c c u p a tio n a l Therapy W estern M ichigan U n iv e rs ity Kalam azoo, M ichigan December 1984

3 ATTENDANT CASE AND OCCUPATIONAL THERAPY B arb ara B a r r e t t L ucas. M.S. W estern M ichigan U n iv e r s ity, 1984 The p u rp o se o f t h i s s tu d y was t o e x p lo re th e c u r r e n t s t a t u s and f u t u r e p o t e n t i a l o f th e r e l a t i o n s h i p betw een a tte n d a n t c a r e and o c c u p a tio n a l th e r a p y. Survey r e s u l t s showed t h a t a la r g e number of o c c u p a tio n a l t h e r a p i s t s a r e in v o lv e d in a t te n d a n t c a r e, bo th in r e h a b i l i t a t i o n f a c i l i t i e s and in in d e p e n d e n t l i v i n g c e n t e r s, and t h a t th e r e i s p o t e n t i a l f o r an in c r e a s e o f o c c u p a tio n a l th e ra p y in v o lv em en t in a t t e n d a n t c a r e.

4 ACKNOWLEDGEMENTS I would l i k e to th a n k D o ris S m ith, L aurence B a r r e t t, B arbara B ak er, K aren Duckw orth. Peggy B a ll, th e C e n te r f o r In d ep en d en t L iv in g in Ann A rb o r, and a l l o t h e r s who a s s i s t e d in th e p r e p a r a tio n o f t h i s s tu d y. I would a l s o l i k e t o e x p re s s a p p r e c ia tio n to The G raduate C o lle g e o f W estern M ichigan U n iv e r s ity f o r aw arding p a r t i a l fu n d in g f o r t h i s r e s e a r c h. B arbara B a r r e t t Lucas i i

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6 R eproduced with perm ission of the copyright ow ner. Further reproduction prohibited without perm ission.

7 L U C A S, BARBARA BARRETT ATTENDANT CARE AND OCCUPATIONAL THERAPY W ESTERN M ICH IGAN U N IV E R S IT Y M.S University Microfilms International 300 N. Zeeb Road, Ann Arbor, MI Copyright :as4 by- L U C A S, BARBARA BARRETT All Rights Reserved

8 R eproduced with perm ission of the copyright ow ner. Further reproduction prohibited without perm ission.

9 C opyright by B arbara B a r r e tt Lucas 1984

10 TABLE OF CONTENTS ACKNOWLEDGEMENTS i i LIST OF TABLES v C h ap ter I. STATEMENT OF THE PROBLEM I I. REVIEW OF THE LITERATURE A tte n d a n t C are and In d e p e n d e n t L iv in o A tte n d a n t C are and O c c u p a tio n a l T h erapy R easons f o r t h i s stu d y I I I. RESEARCH QUESTIONS IV. DESIGN AND METHODOLOGY Sam ples I n s tr u m e n ta tio n P ro c e d u re D ata A n a ly s is V. RESULTS AND DISCUSSION S urvey o f O c c u p a tio n a l T h e r a p is ts a t R e h a b i l i t a t i o n F a c i l i t i e s S urvey o f C e n te rs f o r In d e p e n d e n t L iv in g V I. CONCLUSION AND RECOMMENDATIONS A tte n d a n t C are and O c c u p a tio n a l T h e r a p y - - P r a c tic e A tte n d a n t C are and O c c u p a tio n a l T h e ra p y --T h e o ry A tte n d a n t C are and O c c u p a tio n a l T h era p y --E d u ca tio n in

11 APPENDICES A. A tten d an t C are Needs A nalyses B. C re a tin g PCA Jobs--R econraendations C. A tten d an t Management as a O ccupational Therapy M odality 89 D. Survey of O ccu p atio n al T h e ra p is ts E. Survey of C e n te rs f o r Independent L iv in g F. D e fin itio n s o f Terms BIBLIOGRAPHY iv

12 LIST OF TABLES 1. Q u e stio n s #2 & #4: What a r e th e so u rc e s of a t t e n d a n t s in your community? Q u e stio n s #2 & #4: F re q u e n c ie s o f s o u rc e s as l i s t e d by re s p o n d e n ts Q u estio n #7: Do you f e e l t h a t y o u r community h a s enough a tte n d a n t c a r e program s t o meet t h e need? Q u estio n #8: What a r e th e paym ent s o u rc e s f o r a t t e n d a n t c a r e in y o u r community? Q u e stio n #10: O c c u p a tio n a l t h e r a p i s t s p r o v is io n o f a tte n d a n t c a r e s u p p o r t s e r v i c e s Q u e stio n #6: R easons f o r n o t p ro v id in g a tte n d a n t r e c r u itm e n t, s c r e e n in g, t r a i n i n g, p lacem en t, and fo llo w -u p Q u estio n #15: S e r v ic e s p ro v id ed by C IL 's S. Q u estio n #16: What s u b j e c t a r e a s a re in c lu d e d in your a t te n d a n t t r a i n i n g c o u rse? Q u e stio n #20: C IL 's p e rc e p tio n o f th e a p p r o p r ia te n e s s of 0T in v o lv e m e n t

13 CHAPTER I INTRODUCTION S tatem en t of th e Problem *1 "A tten d an t c a re a e rv lc e s a r e th o s e perform ed by an a tte n d a n t when i....- a s s is tin g a s e v e re ly d is a b le d person in b a th in g, d r e s s in g, grooming, t o i l e t c a r e, and o th e r a c t i v i t i e s o f d a ily liv in g " (DeJong & Wenker, 1979, p ). DeJong and Wenker e stim a te d t h a t in 1977, about 2.9 m illio n a d u lt Americans needed a s s is ta n c e w ith p e rso n a l c a r e. T h eir f ig u r e was based on n a tio n a l su rv ey s (see Appendix A) which in d ic a te d t h a t about 1.1 * of a l l working aqe a d u lts and ab o u t 6.5% of a l l e ld e r ly need p e rso n a l c a re a s s is ta n c e. There a re people who liv e in i n s t i t u t i o n s o r r e s i d e n t i a l c a re f a c i l i t i e s who may have th e p o t e n t i a l f o r liv in g in d e p e n d e n tly in th e community w ith th e su p p o rt o f an a tte n d a n t. There a r e o th e r s who liv e alo n e who a tte m p t to manage on t h e i r own, w ith o u t an a tte n d a n t. A stu d y by DeJong (1977a) found t h a t in th e s e s i t u a t i o n s, th e "absence of a d d itio n a l h e lp d ra m a tic a lly in c re a s e s th e r i s k o f f u tu r e i n s t i t u t i o n a l i z a t i o n ". The s tu d y a ls o found t h a t a lth o u g h in M assach u setts most people did have someone a v a ila b le to h e lp them w ith p erso n al c a r e, "U sually th a t p erso n i s an o th er household member" (p. 6 ). The study p o in ts o u t t h a t re ly in g on fam ily members can r e s u l t in a high amount of s t r e s s w ith in th e fa m ily. And, re c e iv in g f r e e h e lp from fam ily o r f r ie n d s p u ts th e h an d icap p er in a dependent r o l e, a s opposed to t h e more independent r o l e o f d ir e c tin g a p aid employee to p ro v id e th e c a r e. A person who i s p h y s ic a lly unable 1

14 to perform s e l f - c a r e ta s k s can g a in c o n tro l over t h i s im p o rtan t a sp e c t of h i s or h e r l i f e by em ploying and d ir e c tin g an a tte n d a n t to p rovide perso n al c a r e a s s is ta n c e. There i s an em phasis in o c c u p a tio n a l th e ra p y th e o ry on h e lp in g c l i e n t s to a c h ie v e independence and c o n tro l in th e realm s of s e l f - c a r e, work, and l e i s u r e. U n til a 1984 a r t i c l e by N e is ta d t and Marques, th e re had been no d is c u s s io n in th e o c c u p a tio n a l th erap y l i t e r a t u r e co n cern in g th e ro le o f o c c u p a tio n a l t h e r a p i s t s in h e lp in g p erso n s who need a tte n d a n t c a re in o rd er t o ach iev e c o n tro l over th e i r s e l f - c a r e. A d m in istratio n of a tte n d a n t c a re programming may be an a p p ro p ria te s e r v ic e t h a t o c c u p a tio n a l th e ra p y can o f f e r to c e r ta in groups of d is a b le d p e rso n s. A lso, a tte n d a n t c a re may be an im portant c o n s id e ra tio n in th e tr e a tm e n t p lanning f o r the r e c ip ie n ts o f o c c u p a tio n a l th e ra p y s e r v ic e s. T his stu d y se e k s to answer t h e q u e s tio n : What i s th e c u r r e n t s t a t u s and f u tu r e p o t e n t i a l of t h e r e la tio n s h ip between a tte n d a n t care and o c c u p a tio n a l th erap y?

15 CHAPTER II REVIEW OF THE LITERATURE A tten d an t C are and Independent L iving The Independent L iv in g Movement The "ind ep en d en t liv in g " aoveaent h as promoted a tte n d a n t c a re as an a lt e r n a t i v e to fam ily o r i n s t i t u t i o n a l h e lp. DeJong ( c ite d in S igaan, 1930, p. 67) h as d e fin e d th e independent liv in g ao v eaen t as " th e p ro c e ss o f t r a n s l a t i n g in to r e a l i t y th e th e o ry t h a t, given a p p ro p ria te s u p p o rtiv e s e r v ic e s, a c c e s s ib le e n v iro n a e n ts, and p e r tin e n t in fo rm a tio n and s k i l l s, s e v e re ly d is a b le d in d iv id u a ls aay a c tiv e ly p a r t i c i p a t e in a l l a s p e c ts of s o c ie ty." A review o f th e w r itin g s of such in dependent li v i n g aoveaent p roponents as C ole (1979), Crewe (1979), DeJong (1979), DeJong and Wenker (1979), and R ice, R o e ssle r, Greenwood, and F ried en (1983) r e v e a ls t h a t th e p h ilo s o p h ie s eabodied in th e in d ep en d en t liv in g movement a ro se from v a rio u s o th e r re c e n t s o c ia l movements. The c u rre n t tre n d tow ards d e i n s t i t u t i o n a l i z a t i o n has c o n trib u te d t o in d ep en d en t l i v i n g 's g o al o f making com aunity l i f e p o s s ib le f o r more d is a b le d p e o p le. The c i v i l r ig h td movement has f o s te r e d th e id e a t h a t community l i f e i s n o t j u s t an i d e a l, b u t i s a p e r s o n 's r i g h t, and th a t b a r r i e r s to t h i s l i f e must be removed. The consum er, s e l f - h e l p, and d e m e d ic a liz a tio n movements have p ro ao ted th e co n cep t t h a t d is a b le d p erso n s can le a r n to ta k e on r e s p o n s i b i l i t y f o r t h e i r own h e a lth and w e lfa re and sh o u ld avoid 3

16 un n ecessary r e lia n c e on m edical p r o f e s s io n a ls. T i t l e VII o f th e 1978 ammendments to t h e R e h a b ilita tio n Act of 1973 a u th o riz e s g r a n ts f o r t h e e s ta b lis h m e n t and o p e ra tio n of Independent L iv in g C en ters ( a ls o c a lle d "C en ters f o r Independent L iv in g " ). DeJong ( c ite d in Sigman, 1980, p. 67) d e fin e s an Independent L iv in g C en ter a s "a com m unity-based, n o n - p r o f it, nonr e s i d e n t i a l program which i s c o n tr o lle d by th e d is a b le d consum ers i t s e rv e s, p ro v id e s d i r e c t l y o r c o o rd in a te s i n d i r e c t l y thro u g h r e f e r r a l th o s e s e r v ic e s which a s s i s t s e v e re ly d is a b le d in d iv id u a ls to in c re a s e p erso n al s e lf - d e te r m in a tio n and to m inim ize unnecessary dependence upon o t h e r s." In th e R e h a b ilita tio n Act, a tte n d a n t c a re i s s p e c ifie d a s one o f th e f i v e c o re s e r v ic e s which the ind ep en d en t liv in g c e n te r s m ust make every e f f o r t to p ro v id e. I t i s a p p ro p ria te th a t a tte n d a n t care i s mandated a s a core s e r v ic e, because i t i s c o n sid e re d by proponents o f th e movement t o be b a s ic t o independent liv in g i d e a l s. W ithout an a tte n d a n t, (or p e rso n a l c a re a tte n d a n t CPCA1), d e i n s t i t u t i o n a l i z a t i o n i s im p o ssib le f o r many d is a b le d p e rs o n s. In a survey o f 131 r e h a b i l i t a t i o n a g e n c ie s in t h e U nited S ta te s, 71* had c l i e n t s liv in g in i n s t i t u t i o n s th a t th e y f e l t could make t h e t r a n s i t i o n t o independence i f th ey had a tte n d a n t c a r e (Thornock, H u tch in s, Meyer, Kenyon, & W illiam s, 1978). In a n o th e r study of w orking-age a d u lts liv in g in c a re f a c i l i t i e s, tw o - th ir d s of th e 37 p eo p le surveyed s a id they f e l t th e y c o u ld le a v e t h e i r f a c i l i t y i f th e y had a tte n d a n t c a re (DeJong, 1977a). In h i s 1980 a r t i c l e on home h e a lth c a r e, S h r i f t e r sa y s: "The U nited S ta te s Accounting O ffic e has

17 su b m itted th r e e c o n se c u tiv e r e p o r ts o v er th e l a s t s i x y e a rs in d ic a tin g th a t 30% to 40% o f p a t i e n t s in n u rsin g hones co u ld s a f e ly and e f f e c t i v e l y be tr e a t e d in th e hone". W ithout an a tte n d a n t, th e c i v i l r i g h t o f p a r t i c i p a t i o n in th e co n n u n ity nay n o t be a t t a i n a b l e fo r th o s e who need h e lp t o g et o u t of bed and d re s s e d every d ay. T i t l e V o f the R e h a b ilita tio n Act e s t a b l i s h e s a c i v i l r i g h t s p ro v is io n f o r handicapped p e rso n s which nakes b a r r i e r s in a r c h i t e c t u r e, tr a n s p o r ta tio n, employment and e d u c a tio n i l l e g a l. In rev iew in g th e l i t e r a t u r e, th e q u e stio n se e n s to be: What good a r e jo b s and a b a r r i e r - f r e e environm ent i f a person is un ab le to g e t o u t of t h e house? Independent liv in g p ro p o n en ts (a s c ite d e a r l i e r ) f e e l th a t p e rso n a l c a r e a s s is ta n c e from th e m edical w orld ( i n s t i t u t i o n s or home h e a lth ag en cies) c a n in f r in g e upon th e h a n d ic a p p e r's r e s p o n s i b i l i t y f o r d e c is io n s c o n c e rn in g h is o r her h e a lth c a re, because o f th e em phasis placed on n u rse a n d /o r d o c to r s u p e rv is io n. Thus, th e g o a ls o f consum erism, s e lf - h e lp, and d e m e d ic a liz a tio n can n o t be a t t a i n e d. A lthough n u rs e or p h y sic ia n s u p e rv is io n i s n e c e ssa ry in some c a s e s, independent liv in g w r ite r s f e e l t h a t a l l to o o fte n th e on-going p re se n c e o f m edical p r o f e s s io n a ls in a handicapped p e r s o n 's l i f e u n n e c e s s a rily p la c e s th e person in a " s ic k r o l e. A p r i n c i p l e of th e independent liv in g movement is t h a t i f a handicapped p e r s o n 's c o n d itio n is s t a b l e, th en i t is he o r she, and h o t th e m edical w o rld, who i s in th e b e s t p o s itio n to make d e c is io n s ab o u t h i s or h e r own h e a lth c a r e n eed s. To be in acco rd an ce with t h e id e a l of th e independent liv in g

18 movement t h a t handicapped persons be in c o n tr o l of t h e i r a tte n d a n t 0 c a re, a tte n d a n t c a r e s e r v ic e s sh o u ld be s u p p o rtiv e, r a t h e r th an d ir e c tiv e. S e rv ic e s which can be o ffe re d a re a tte n d a n t r e f e r r a l l i s t s which com pile names o f p erso n s seeking employment as a tte n d a n ts, t r a i n i n g program s pro v id ed t o p ro s p e c tiv e a tte n d a n ts in p erso n al c a r e te c h n iq u e s and in dependent liv in g p h ilo s o p h ie s, and a tte n d a n t management t r a in in g f o r h an d icap p ers in how t o r e c r u i t and s u p e rv is e a tte n d a n ts. With th e s e s e r v ic e s, u ltim a te r e s p o n s i b i l i t y and c o n tro l rem ains in th e hands o f th e handicapped em ployer. T h is i s in c o n tr a s t to home h e a lth agency s e r v ic e s in which th e h an d ic a p p e r i s provided w ith hone h e a lth a id e s who a re h ire d and t r a in e d by th e agency. To av o id dependence on s e r v ic e s, g o a l- s e ttin g i s o fte n a p a rt of th e program o f a C en ter f o r Independent L iv in g (C IL ). For in s ta n c e, a CIL in C olorado r e q u ir e s t h a t c l i e n t s work w ith CIL s t a f f members to develop an in d iv id u a liz e d grow th p lan (Page, 1981). T his p ro c e ss c a l l s f o r a ssessm en t and g o a l- s e t t i n g w ith the o b je c tiv e o f t o t a l independence in th e a tte n d a n t care p ro c e s s. The growth p lan s a re review ed and re v is e d p e r io d ic a lly to a ssu re p ro g re ss tow ards t h i s g o a l. Types of a tte n d a n t c a re The p h y s ic a l c o n d itio n of th e d is a b le d perso n h e lp s to d eterm in e th e ty p e o f a s s is ta n c e needed. A person who i s re c o v e rin g a t home from an a c c id e n t o r i l l n e s s a f t e r h o s p i t a l i z a t i o n o fte n needs only tem porary c a r e, u n t i l th e a c u te c o n d itio n has s t a b i l i z e d. These

19 p erso n s w ith a c u te needs are# n o t th e focus o f t h i s e x p lo ra tio n, a s t h e i r c o n d itio n s u s u a lly n e c e s s ita te " s k ille d c a re " ( s k i l l e d c a re i s used h ere to r e f e r to th e perform ance o f p ro ced u res th a t r e q u ir e th e s p e c ia liz e d s k i l l s of m edical p e rs o n n e l). The fo c u s o f t h i s e x p lo ra tio n i s on th o se peo p le fo r whoa s k i l l e d c a re i s n o t n e c e s s a ry --p e o p le who have perm anent o r c h ro n ic d is a b lin g c o n d itio n s which have s t a b i l i z e d, and who need ongoing a s s is ta n c e. The age and c o g n itiv e a b i l i t y o f a person in flu e n c e s th e ty p e of c a r e needed. P erso n s who a r e unable to li v e in d ep en d en tly due to c o g n itiv e d e f i c i t s ( e.g. a d e v e lo p a e n ta lly d is a b le d a d u l t ), or age ( e.g. a handicapped c h i l d ), may need in te rv e n tio n o rie n te d tow ards h elp in g fam ily members t o p ro v id e c a r e. T h is can be in th e form o f r e s p i t e c a r e, which i s p la n n e d, in t e r m i t t e n t, sh o rt-te rm c a r e designed to provide p e r io d ic r e l i e f to th e fa m ily a n d /o r th e c a re g iv e r from 24 h o u rs o f c o n tin u o u s c a re (H asselkus & Brown, 1983). The prim ary focus o f th i s stu d y i s on p erso n s who have th e i n t e l l e c t u a l p o te n tia l to l i v e in d ep en d en tly and t o d i r e c t t h e i r own a tte n d a n ts. To manage a tte n d a n ts, a p erso n m ust be a b le to i d e n tif y what he o r sh e n eed s, and then t o convey t h i s to o th e r s. Some handicapped p e rso n s l i v e in sm all group liv in g s i t u a t i o n s in which one o r more a tte n d a n ts a r e sh a re d. O th ers l i v e a lo n e, but in c lo s e proxim ity to o th e r h an d icap p ers in c lu s te r e d housing arran g em en ts, to allo w th e sh a rin g o f a tte n d a n ts. Some people e l e c t to have a li v e - i n a tte n d a n t, o fte n i n com bination w ith p a r t - t i n e a tte n d a n ts (to p ro v id e r e l i e f to th e l i v e - i n h e lp e r ). O th ers liv e w ith fam ily members, b u t avoid a p o s itio n o f dependency on th e fam ily by h ir in g a tte n d a n ts.

20 s A tten d an ts a r e commonly needed f o r a few hours tw ice d a ily, to h e lp w ith g e ttin g up and with going t o bed. Some people have c o n d itio n s which r e q u ir e an a tte n d a n t to be p re s e n t 24 h o u rs, so th a t h e lp i s a v a ila b le in c a s e of em ergency. O th e rs need a s s is ta n c e only in te r m i t t e n t l y, such a s in changing p o s itio n p e r io d ic a lly th ro u g h o u t th e n ig h t to avoid d e c u b i t i. The ta s k s perform ed by a tte n d a n ts g e n e ra lly f a l l in to two a re a s : p e rso n a l c a re and housekeeping. According t o a 1978 stu d y by H u tchins, Thornock, L in d g re, and P arka which surveyed 21 a tte n d a n ts, th e p erso n al c a re a c t i v i t i e s moat f r e q u e n tly perform ed in clu d ed g e ttin g th e employer i n t o and o u t of bed, d r e s s in g, a s s i s t i n g w ith bowel and b la d d e r program s, and b a th in g. The most fre q u e n t housekeeping a c t i v i t i e s r e p o rte d were p re p a rin g and s e rv in g m eals, and c le a n in g and s tr a ig h te n in g up th e h o u se. I t was a l s o common fo r a tte n d a n ts to accompany t h e i r em ployers on e rra n d s and to m edical ap p o in tm en ts, and to p ro v id e tr a n s p o r ta tio n t o jo b s o r sc h o o ls. S ta tu s of a tte n d a n t c a re today The n a tio n a l p r o f i t and n o n - p r o f it home h e a lth care system i s grow ing. M arshall and K err (1981) p o in t to t h e t r a n s i t i o n from a c u te h o s p ita l c a re to home c a r e, and a t t r i b u t e i t t o th e lower c o s ts o f home care and th e tre n d tow ards d e i n s t i t u t i o n a l i z a t i o n. Home h e a lth c a re a g e n c ie s a re o b v io u sly f u l f i l l i n g an im p o rta n t need by p ro v id in g s k i l l e d, tem porary c a r e t h a t i s l e s s expensive th a n i n s t i t u t i o n a l c a r e. But due t o overhead c o s t s, p erso n al c a r e s e r v ic e s c o n tra c te d thro u g h a home h e a lth agency w i l l n e c e s s a rily

21 be more ex p en siv e th e n th o se c o n tra c te d d i r e c t l y between the handicapped em ployer and th e a tte n d a n t. When s k i l l e d c a re i s n o t needed, home h e a lth a g e n c ie s become a c o s tly so u rc e o f a tte n d a n t c a re. I t i s im p o rta n t th a t a l t e r n a t i v e s t o home h e a lth agency care be developed. From th e number o f f e d e r a l, s t a t e, and u n iv e r s ity h an d icap p er n eed s a n a ly se s t h a t have been perform ed, i t i s a p p a re n t t h a t th e need fo r a tte n d a n t c a re i s b ein g reco g n ized a s a v a lid concern (s e e Appendix A ). A tten d an t c a re manuals and tr a in in g g u id es ( f o r both a tte n d a n ts and t h e i r handicapped em ployers) have been p u b lish e d by u n i v e r s i t i e s (Larson & S n o b le, 1978), and by th e I n s t i t u t e fo r R e h a b ilita tio n and Research (C ole, S p e rry, Board & F rie d e n, 1979, 1980a, 1980b, 1980c). S ev e ra l s tu d ie s ( to be d isc u se d l a t e r ) have been com pleted which survey a tte n d a n ts ' a t t i t u d e s ab o u t t h e i r jo b s, to g a in i n s ig h t in to th e c a u se s of h ig h a tte n d a n t tu rn o v e r r a t e s (A tk in s, Meyer & Sm ith, 1982; S te ln a c k, Postm a, G o ld ste in & S hepard, 1981). L ess th a n h a lf o f th e 75 C IL 's in a d ir e c to r y com piled in 1979 (AOTA, 1982) were n o ted to p ro v id e s e r v ic e s r e l a t e d to a tte n d a n t c a re (n o te t h a t alth o u g h t h i s was a nationw ide l i s t, no re fe re n c e t o i t s co m pleteness was fo u n d ). Throughout th e in d ep en d en t l iv in g l i t e r a t u r e th e u n a v a ila b ility o f ad eq u ate a tte n d a n t c a r e s e r v ic e s i s lam ented. A stu d y by Thornock e t a l. (1978) surveyed 131 r e h a b i l i t a t i o n i n s t i t u t i o n s in th e U nited S t a t e s. The a u th o rs sa y : Over 85 p e rc e n t o f the re sp o n d e n ts in d ic a te d t h a t a tte n d a n t c a re was ex trem ely or v e ry im p o rtan t t o d is a b le d c l i e n t s in th e fo llo w in g a r e a s : prom oting independence, m ain tain in g h ig h er m orale, m a in ta in in g re s to re d p h y s ic a l c o n d itio n, d ecreased h o s p i t a l i z a t i o n, and b e t t e r o v e r a ll h e a l t h... A d d itio n al b e n e f its in tw o a re a s were m entioned by some

22 re sp o n d e n ts: re d u c in g th e n e c e s s ity of i n s t i t u t i o n a l i z i n g d is a b le d p e r s o n s...an d red u cin g th e burden to f a m ilie s. (p. 1 48). The a u th o rs go on t o say: R espondents su g g ested a number of p o s s ib le s o lu tio n s t o th e a tte n d a n t c a re problem : more fu n d in g, b e t t e r t r a i n i n g fo r a tte n d a n ts, in n o v a tiv e program s, p u b lic e d u c a tio n reg a rd in g th e needs o f t h e d is a b le d, ex p an sio n of c u r r e n t agency s e r v ic e s to in c lu d e a tte n d a n t s e r v ic e s, needs s u rv e y s, p o l i t i c a l a c tiv is m, and sh ared housing a rran g em en ts. (p. 151) The d a ta shows t h a t th e p e rso n n e l a re w ell aw are th a t a tte n d a n t c a re i s a c r i t i c a l su p p o rt f o r in d ep en d en t liv in g among s e v e re ly d isa b le d p e o p le. Y et, m ost of th e ag en cies do n o t in v o lv e them selves in p ro v id in g any type o f fo rm alized access t o a tte n d a n ts fo r t h e i r c l i e n t s (T hornock, e t a l., 1878). A tten d an t C are and O ccupational Therapy The re le v a n c e o f a tte n d a n t c a re t o th e f i e l d o f o c c u p a tio n a l th e ra p y The g o a ls of o c c u p a tio n a l th e ra p y mesh w e ll with th o se o f th e independent liv in g movement. A ccording to R ic e, e t a l. <1983), independent liv in g em phasizes freedom o f c h o ic e, p e rso n a l c o n tro l o f o n e 's l i f e, and p a r t i c i p a t i o n in s ig n i f i c a n t r o l e a o f w orker, homemaker, and p ro v id e r" <p. 3 ), In th e " E s s e n tia ls o f an A ccred ited E d ucational Program f o r th e O ccupational T h e ra p ist" (American O ccupational Therapy A sso c ia tio n CA0TA1, 1983a), a d e s c r ip tio n of o ccu p atio n al th e ra p y in c lu d e s t h i s sta te m e n t: I t s fundam ental concern i s th e developm ent and m aintenance of t h e c a p a c ity th ro u g h o u t th e l i f e span t o perform w ith s a t i s f a c t i o n to s e l f and o th e r s th o se ta s k s and r o l e s e s s e n tia l t o p ro d u c tiv e liv in g and to th e m astery o f

23 11 s e l f and th e environm ent" (p ). The "E ssen tials'* go on to say: "... i t s concern i s w ith f a c t o r s which se rv e a s b a r r i e r s or im pedim ents to th e i n d i v i d u a l 's a b i l i t y to fu n c tio n. Thus, li k e th e ind ep en d en t liv in g movement, o c c u p a tio n a l th e ra p y i s concerned w ith freedom o f c h o ic e (re d u c tio n o f b a r r i e r s t o f u n c tio n ), p e rso n a l c o n tro l (m astery of s e l f and en v iro n m e n t), and p a r t i c i p a t i o n in r o le s o f w orker, homemaker, and p ro v id e r (perform ance o f ta s k s and r o l e s e s s e n tia l t o p ro d u ctiv e l i v i n g ). Having e s ta b lis h e d th e s e b a s ic p h ilo s o p h ic a l s i m i l a r i t i e s, th e o c c u p a tio n a l th e ra p y l i t e r a t u r e was review ed f o r d is c u s s io n o f a tte n d a n t c a r e. T h is review in clu d ed f i v e books which r e l a t e to o c c u p a tio n a l th e ra p y th e o ry and tre a tm e n t f o r p h y s ic a l d y sfu n ctio n (K ie lh o fn e r, 1983; Mosey, 1981; P e d r e t t i, 1981; Reed & Sanderson, 1980; and Trom bley, 1983). Also review ed were a l l is s u e s o f th e American Jo u rn a l o f O ccupational Therapy from 1979 t o th e p r e s e n t, th e S tan d ard s o f P r a c tic e fo r O ccu p atio n al Therapy" (AOTA, c), the "S tan d ard s o f P r a c tic e f o r O c c u a tio n a l Therapy S e rv ic e s in a Home H ealth Program" (AOTA, 1978), and The R oles and F u n ctio n s of O ccupational Therapy S e rv ic e s f o r th e S ev e re ly D isab led " (AOTA, 1983b). A 1984 a r t i c l e by N e is ta d t and Marques was found which d i r e c t l y a d d re sse s th e r o l e of o c c u p a tio n a l t h e r a p i s t s in c o o rd in a tin g an in d ep en d en t liv in g s k i l l s tr a in in g program which in c lu d e s a tte n d a n t management t r a i n i n g. No o th e r d is c u s s io n o f a tte n d a n t c a r e was found in th e o c c u p a tio n a l th e ra p y l i t e r a t u r e. A tten d an t c a r e i s a r e l a t i v e l y new co n cep t, which came about w ith

24 12 t h e b i r t h of t h e Independent liv in g movement in th e m id -6 0 's. A lthough i t ap p ears t h a t in th e p a s t o c c u p a tio n a l th erap y has n o t em phasized a tte n d a n t c a r e, t h e a r t i c l e by N e is ta d t and Marques may mark th e beginning o f o c c u p a tio n a l th erap y re c o g n itio n o f th e im portance o f a tte n d a n t c a r e, and i t s a p p ro p ria te n e s s t o th e f i e l d. i... The fo llo w in g d is c u s s io n e x p lo re s com ponents o f th e a tte n d a n t c a re and o c c u p a tio n a l th e ra p y p ro c e s s e s, to a n a ly z e t h e p o te n tia l f o r in c re a s e d o c c u p a tio n a l th e ra p y involvem ent in t h i s a r e a. A d ap tatio n thro u g h i n t e r a c t i o n w ith the environm ent A key s tr a te g y o f th e o c c u p a tio n a l th e ra p y p ro c e ss i s f a c i l i t a t i n g t h e c l i e n t 's c o n tro l o f th e e x te r n a l environm ent. Johnson and K ie lh o fn e r (1983) sa y : "The o c c u p a tio n a l t h e r a p i s t i s concerned w ith th e a b i l i t y of in d iv id u a ls to com petently i n t e r a c t with th e environm ent" ( p. 186). The E s s e n tia ls o f an A ccred ited E ducatio n al Program fo r t h e O ccupational T h e ra p ist" (AOTA, 1983a) a l s o m ention th e o c c u p a tio n a l th e ra p y concern with m astery o f th e environm ent. Because a n.a tte n d a n t i s a p a r t o f t h e handicapped em p lo y e r's en v iro n m en t, perhaps th e p ro c e ss o f le a rn in g how to co m p eten tly h ire and d i r e c t a tte n d a n ts to p ro v id e s e l f - c a r e can be viewed a s a th e ra p e u tic a d a p ta tio n g ain ed thro u g h i n t e r a c t i o n w ith and m astery o f th e environm ent. O ccu p atio n al th e ra p y l i t e r a t u r e does n o t em phasize th e u s e of th e human environm ent as a th e ra p e u tic a d a p ta tio n. A lthough Mosey (1973) d o es mention t h a t humans have a m astery n eed which in c lu d e s t h e d e s ir e t o e x e rt sone c o n tro l over o th e r p e o p le, s h e l i m i t s h e r s e lf t o th e

25 non-human environm ent when d is c u s s in g th e o c c u p a tio n a l th erap y p ro c e ss: "Fundam ental to th e p r a c tic e o f o c c u p a tio n a l th erap y i s concern fo r and u se of th e non-human environm ent" (p. 3 ), and "The o ccu p atio n al th e r a p i s t i s concerned w ith h e lp in g c l i e n t s t o become adept in m an ip u latin g th e non-human environm ent" (p. 8 ). A d is c u s s io n of th e r a p e u tic a d a p ta tio n s in th e " E s s e n tia ls " i s a ls o lim ite d to non- human environm ental elem en ts only ( e.g. environm ental a d ju stm e n ts, o r th o tic s, a s s i s t i v e d e v ic e s and equipm ent). O ccu p atio n al th e ra p y i s a h u m an istic f i e l d, and p erh ap s th e u t i l i z a t i o n of t h e non-human environm ent only i s an u n n e c e ssa ry, se lf-im p o se d boundary. Technology v e rsu s humanslsm O ccupational th e ra p y a p p e a rs eag er to in c o rp o ra te the th e r a p e u tic equipm ent and technology t h a t i s a v a ila b le on th e m arket i n t o i t s scope o f p r a c tic e. Z isserm an (1981) s a y s : F a c i l i t a t i n g a d a p tiv e re sp o n se s i s th e key to p la c in g many handicapped p e rso n s in th e o c c u p a tio n a l m ainstream, b u t as c h ro n ic d i s a b i l i t i e s become more s o p h is tic a te d and se v e re, t h e r a p i s t s must p ro v id e more s o p h is tic a te d a d a p tiv e equipm ent. T h is im p lie s th e need f o r more te c h n o lo g ic a l e d u c a tio n fo r t h e r a p i s t s who must design and c o n s tru c t t h i s equipm ent, (p. 17) In a s e n se, t h i s w r ite r i s acknow ledging the f a c t t h a t the more d is a b le d a person i s, th e more d i f f i c u l t i t i s t o d esig n a s u b s t i t u t e fo r human c a p a b i l i t i e s. But i s th e te c h n o lo g ic a l a re a the on ly d ir e c tio n in which o c c u p a tio n a l th e ra p y should grow? Laukaran (1977) d is c u s s e s R e i l l y 's b e l i e f t h a t th e "o v erm echanization" of t h e p ro fe s s io n h a s produced t h e r a p i s t s t h a t ore "accustomed t o s u b s titu tin g th e te c h n o lo g ic a l f o r th e hu m an istic and

26 14 in te rp e rs o n a l a s p e c ts - - th e l a t t e r th e e s s e n tia l r o o ts o f o ccu p atio n al th erap y " (p. 7 1 ). D isc u ssin g the f u tu r e o f h e a lth c a re as i t r e l a t e s t o o c c u p a tio n a l th e ra p y, Gray (1983) say s: "We w i l l have a g r e a te r need f o r c lo s e in t e r a c t i o n o r h ig h -to u ch a s a com pensation fo r in c re a se d tech n o lo g y. I n te r a c tio n w ith o th e r p e o p le m ust rem ain an im p o rta n t p a r t o f any d e liv e r y system, p a r t i c u l a r l y th e h e a lth care d e liv e ry system " (p ). Using an a tte n d a n t would seem to e a s ily q u a lify a s a "h ig h -to u c h " method o f a d a p ta tio n t o d i s a b i l i t y. I t sho u ld be k ep t in mind th a t th e u se of human v e rs u s non-human a id need n o t be an e i t h e r - o r p ro p o s itio n. S ev e re ly handicapped persona who b e n e f it from th e u se o f com plicated equipm ent may need a s s is ta n c e in i t s s e t- u p and m aintenance, a s w ell a s needing p e rso n a l c a r e a s s is ta n c e th a t o n ly human h elp can p ro v id e. Trombley (1983, p. 396) m en tio n s th e need o f q u a d ra p le g ic s f o r on-going a s s is ta n c e in b o th equipm ent and p e rso n a l c a r e a r e a s. Hunan a s s is ta n c e and th e q u e stio n o f independence v s. dependence There a re d if f e r e n c e s in th e ways in which o c c u p a tio n a l th e ra p y and in d ep en d en t liv in g w r ite r s d is c u s s independence and dependence a s they r e f e r to th e u se of human a s s i s t a n c e. The o c c u p a tio n a l th e ra p y l i t e r a t u r e te n d s to a s s o c ia te th e u s e of human a s s i s t a n c e with dependence. T h is can be seen from th e fo llo w in g qu o te from M alick and S h erry (1978): The lo s s o f independence in th e s e b a s ic (d a ily liv in g ) a c t i v i t i e s has a tra u m a tic e f f e c t on body image and may a lso a f f e c t th o se p erso n s a s s o c ia te d w ith th e p a t i e n t... Dependency in s e l f - c a r e i s o fte n the f i r s t s ig n of d e p re ssio n o r th e major cause o f d e p r e s s io n...a c h ro n ic a lly d is a b le d person who can be independent in s e l f - c a r e

27 a c t i v i t i e s r e q u ir e s f a r l e s s c u s to d ia l c a r e and th u s can be cared f o r in a more in d ep en d en t u n i t in a community s e t t i n g. (p. 184) The fo llo w in g quote by an in d ep en d en t l iv in g w r i t e r (DeJong, 1977b), i s a l s o concerned w ith t h e p sy c h o lo g ic a l e f f e c t s o f s e l f - c a r e dependence. But DeJong c o n s id e rs th e u s e of human a s s i s t a n c e (in th e form o f an a tte n d a n t) as t h e key t o independence, n o t dependence: The management o f o n e 's own p e rs o n a l c a re i s e s p e c ia lly im p o rta n t to o n e 's s e n s e of independence and s e lf - w o r th. Dependence in th e c a r e of o n e 's own body i s to ren o u n ce much o f o n e 's sense o f p e rso n a l automony and s e r io u s ly compromises a p e r s o n 's w illin g n e s s to be ind ep en d en t in o th e r sp h e re s o f l i f e. (p. 21) Both q u o te s seem to acknow ledge t h a t c u s to d ia l- ty p e c a r e can have d e le te r io u s e f f e c t s on a p e rso n. But t h e independent liv in g movement o f f e r s a tte n d a n t c a r e as a n a l t e r n a t i v e, w hereas o c c u p a tio n a l th e ra p y te n d s to fo c u s on d e v e lo p in g s k i l l s so th a t human a s s is ta n c e can be a v o id ed. Ind ep en d en t li v i n g w r ite r s re c o g n iz e th a t t h i s i s not alw ays an o p tio n f o r se v e re ly handicapped p erso n s. W riters o f in d ep en d en t liv in g l i t e r a t u r e em phasize th a t the need fo r an a tte n d a n t i s f o r some p eo p le not only n e c e s s a ry, but a p r e r e q u is ite t o independence in i t s e l f. McGwinn (1977) sa y s: "An a tte n d a n t can e a s ily be th e most im p o rta n t person in a d isa b le d in d iv id u a l's l i f e. W ithout someone to a c t i v a t e h is w ishes and in te n tio n s, a d is a b le d p erso n can become a n o n -fu n c tio n in g i n v a l i d (p. 8 4 ). Sm ith & Meyer (1981) s a y : The lif e - t h r e a t e n i n g r a m if ic a tio n s o f PCA's le a v in g t h e i r jo b s a r e o b v io u s. Q u ite a in p ly, i f th e ir d is a b le d em ployers cannot f in d re p la c e m e n ts, t h e em ployers may have to q u it t h e i r g obs, s e l l t h e i r homes, give up t h e i r independence, and move in to n u rsin g homes g u s t so they can s u rv iv e. (p. 260)

28 A M assachusetts study (DeJong, 1977a) found t h a t fo r many handicapped p e rso n s, a tte n d a n t c a re Is needed b e fo re v o c a tio n a l r e h a b i l i t a t i o n g o als can be a t t a i n e d, th e re b y b ein g a p r e r e q u i s i t e t o v o c a tio n a l independence. A th o ro u g h search of t h e o c c u p a tio n a l th e ra p y l i t e r a t u r e does re v e a l w r i t e r s who d is c u s s t h e use o f human a s s is ta n c e in a p o s itiv e l i g h t. M aguire (1979), m entions t h a t human a s s is ta n c e can red u ce dependence: As most o c c u p a tio n a l t h e r a p i s t s can a t t e s t, th e absence o f a i n ia a l- to - n o d e r a te h e lp (such as tr a n s p o r ta tio n t o the g rocery s t o r e, o r help i n cooking o r c le a n in g ) can so handicap in d iv id u a ls t h a t they a re fo rc e d t o become more dependent than n e c e s s a r y, (p. 99) T roabley (1983) d is c u s s e s t h e American e t h i c of "com pulsive work a c h ie v e a e n t, o v e r-in d e p e n d en c e, and high p ro d u c tiv ity " (p. 1 4 ), and su g g e sts t h a t t h e r a p i s t s can h e lp c l i e n t s t o view t h e i r d im in ish ed c a p a c i t i e s in a aore p o s i t i v e l i g h t, r a t h e r than r e in f o r c e t h i s "o v erindependence" e th ic : In se v e re d i s a b i l i t y c e r t a i n com ponents of th e dependent r o l e are le g itim a te and n e c e ssa ry. K u tn e r-d is c u s s e s the need fo r th e tr a u m a tic a lly d is a b le d p a tie n t to a c c e p t so ae a s p e c t o f a dependent r o l e i f h e i s t o be s u c c e s s f u lly r e h a b i l i t a t e d. Feldman d e s c rib e s p o s itiv e and n e g a tiv e dependency. Depending on th e d eg ree o f d i s a b i l i t y a p a tie n t need s to b e pragm atic and a c c e p t c a r e. P a tie n ts need to be encouraged in a c c e p ta n c e of p o s itiv e dependency and p e rm itte d t o p r a c tic e th o s e s k i l l s and a t t i t u d e s which w i l l a llo w re c e iv in g h e lp t o ach iev e maximal independence. Feldman s t a t e s t h a t th e p a tie n t must le a rn t o ask f o r h e lp and not f e e l h e lp le s s o r in ad eq u ate because of. h is need. (p. 19) Q u a lity v s. Q u an tity o f a s s is ta n c e The p h rase " c u s to d ia l c a r e ", a s used in th e q u o ta tio n c ite d

29 e a r l i e r from M alick and S herry (1978), i s o f te n used in th e o c c u p a tio n a l th e ra p y l i t e r a t u r e in re fe re n c e t o human a s s is ta n c e. As taken from W e b s te r's d ic tio n a r y, c u s to d ia l means " r e l a t i n g to g u a rd ia n sh ip ", and a cu sto d ian i s "one th a t g u ard s and p r o te c ts o r m a in ta in s". The s e n s e o f a need fo r "g u a rd ia n sh ip " assumes an inconpetency in t h e person needing a s s i s t a n c e, th u s th e u se of th e p h rase " c u s to d ia l c a re " may su g g e st n e g a tiv e c o n n o ta tio n s t o th e re a d e r. The "The R oles and F u n c tio n s of O ccu p atio n al Therapy f o r th e S ev erely D isab led " (AOTA, 1983b) d is c u s s e s " s k i l l le v e ls " a s a ff e c tin g "the amount o f c u s to d ia l c a re t h a t w ill be r e q u ir e d " <p ). The em phasis i s on th e amount o f c a r e re q u ire d, r a th e r th an th e ty p e, or q u a lity of c a r e. O ccu p atio n al th e ra p y i s a f i e l d which i s concerned with.q u a lity of l i f e. As Yerxa (1983) say s: "...o c c u p a tio n a l th e r a p is ts p e rc e iv e and v a lu e t h e r i g h t to a s a t i s f y i n g l i f e fo r each person re g a rd le s s o f... d i s a b i l i t y " (p. 151). I t fo llo w s t h a t th e f i e l d should be concerned n o t o n ly w ith the q u a n t i t y, but t h e q u a lity, of c a r e needed by i t s c l i e n t s. A ttendant management as an occupation Because the term "o c c u p a tio n " im p lie s d o in g r a t h e r th an re c e iv in g, u sin g human a s s i s t a n c e does n o t a t f i r s t appear to q u a lify a n an o c c u p a tio n a l a c t i v i t y. The American O ccupational Therapy A sso c ia tio n (1983a) r e f e r s to "o c c u p a tio n " a s th e " g o a l- d ir e c te d use o f tim e, en erg y, i n t e r e s t, and a t t e n t i o n " (p. 817). Nosey (1981) p r e f e r s the phrase " l i f e ta s k s, and d e s c r ib e s

30 18 them a s "th o se a c t i v i t i e s o n e must be a b le to perform in o rd e r to meet h i s or h e r own needs and to b e a c o n tr ib u tin g member of a community" (p. 3). I t is s u g g e ste d here th a t t h e q u e stio n o f w hether o r not using human a s s i s t a n c e is an occupation depends on th e locus o f c o n tr o l, i. e. who i s in c o n tro l o f th e s i t u a t i o n the handicapped person o r th e h e lp e r /a tte n d a n t. The p h ra se " c u s to d ia l care" im p lie s t h a t th e h e lp e r is i n c o n tr o l of t h e s i t u a t i o n, and i s th e "d o e r" who " a c ts upon" t h e d is a b le d p e rso n. For some peo p le who a r e se v e re ly m e n ta lly im paired as w ell a s p h y sic a lly d is a b le d, th i s form o f a s s is ta n c e may be th e only o p tio n open t o them. But in d e p e n d e n t liv in g w r ite r s m a in ta in t h a t many h an d icap p ers can le a r n to manage p e rso n a l care a s s is ta n c e so th a t t h e lo c u s of c o n tro l i s w ith in th e m se lv e s. McGwinn <1977) s t a t e s : A person who i s p h y s ic a lly dependent must e x e r t s u s ta in e d e f f o r t t o develop a s e n s e of s e l f and p erso n al s t y l e. I t is e a sy to become a s p sy c h o lo g ic a lly p a s s iv e a s one i s p h y s ic a lly p a s s iv e. The d isa b le d in d iv id u a l is c o n s ta n tly b ein g a c te d upon p h y s ic a lly, h i s body i s moved and p o s tio n e d, and h i s ta n g ib le environm ent i s moved by o th e r s. To r e t a i n c o n tro l of h i s l i f e and l i f e s t y l e under th ese dependent c irc u m sta n c e s, the d is a b le d in d iv id u a l m ust be alm o st c o n s ta n tly aware and a b le to d i r e c t h i s p erso n al c a r e and the running o f h is home, b u s in e s s, and s o c ia l l i f e. (p. 85) K ie lh o fn e r (1983) d is c u s s e s t h e t r a d i t i o n a l o ccu p atio n al th e ra p y them e t h a t humans a re o c c u p a tio n a l c r e a tu r e s who d e riv e pride and s a t i s f a c t i o n from t h e i r o c c u p a tio n s. Johnson (1973) acknow ledges t h a t o c c u p a tio n s p ro v id e feed b ack to p erso n s ab o u t t h e i r w orth and value a s in d iv id u a ls. The fo llo w in g quote from McGwinn (1977) shows t h a t p rid e c a n be d e riv e d from u s in g human a s s is ta n c e in an o ccu p atio n al manner: Tou can le a r n to have enough c o n fid e n c e in y o u r s e lf and how to ta k e c a r e of y o u r s e lf so t h a t you can ta k e a s tr a n g e r o f f

31 19 th e s t r e e t a t a moment's n o tic e and calm y, i n t e l l i g e n t l y e x p la in to t h a t perso n how to ta k e care o f you...y ou w ill fe e l l i k e y o u 'r e ta k in g c a r e of y o u r s e lf through o th e r p e o p le 's h an d s. ( p. 98) Johnson and K ie lh o fn e r (1983) d is c u s s e n a b lin g c l i e n t s to g a in c o n tr o l of t h e i r l i v e s and p erso n al a f f a i r s a s c e n tr a l to th e o c c u p a tio n a l th e ra p y p ro c e s s. Yerxa (1983) d is c u s s e s the developm ent o f p a t i e n t autonomy and s e l f - d i r e c t e d n e s s, and en a b lin g the p a tie n t to a c t upon th e environm ent r a t h e r than be determ ined by i t as among th o s e f a c t o r s which c o n tr a s t o c c u p a tio n a l th erap y v a lu e s w ith th o se o f m ed icin e. I t seem s, th e n, th a t h e lp in g p erso n s to gain c o n tro l over t h e i r s e l f - c a r e through th e employment o f a tte n d a n ts is id e a lly s u ite d to th e o c c u p a tio n a l th e ra p y p ro c e s s. S o c ia l v e rs u s p h y sic a l independence R e illy (1971) say s: "O ccupational th e r a p i s t s co u ld s ta n d accused by h is to r y of re d u c in g th e ric h n e s s o f t h e i r hum anistic mandates to an ADL s e l f - c a r e l i s t (p. 244). Independent liv in g w r ite r s m ight a g re e, as can be seen by th i s q u o te from DeJong (1977b): T ra d itio n a l m edical r e h a b i l i t a t i o n fo c u se s on p e rso n a l lim ita tio n s such a s muscle s tr e n g th, endurance, m o b ility, and s e l f - c a r e...s u ccess in m edical r e h a b i l i t a t i o n is u s u a lly m easured by t h e d e g re e to which a person re g a in s h is /h e r c a p a c ity fo r p h y s ic a l f u n c tio n in g. Maximum p h y sic a l fu n c tio n in g d o es n o t, however, a u to m a tic a lly t r a n s l a t e in to maximum "independence" in m a tte rs such a s p e rso n a l c a r e. Nor d o es needing h e lp from a n o th e r person a u to m a tic a lly c o n s titu te "dependence" as th e se term s a r e used h e re. Those who need human a s s is ta n c e can s t i l l be in d ep en d en t. F o r the person who n eed s human a s s is ta n c e in p e rso n a l c a r e, maximum independence in c lu d e s th e a b i l i t y to in d e p e n d e n tly d i r e c t a care p r o v id e r. Thus, th e r e i s a s o c ia l component as w e ll as a p h y sic a l com ponent to ac h ie v in g maximum independence in s e l f - c a r e. Independence i s more th an th e absence of need f o r human or m echanical a s s i s t a n c e. W hile m edical r e h a b i l i t a t i o n has g e n e r a lly been s u c c e s s fu l in r e s to r in g

32 p h y sic a l independence, i t has n o t been e q u a lly s u c c e s s fu l in p ro n o tin g s o c ia l independence. (p. 80) C o le, e t a l. (1980c) d e s c rib e th e in d ep en d en t liv in g movement's d e f i n i t i o n of independence: In d ependent l iv in g means acc e p tin g a d u lt r e s p o n s i b i l i t i e s, u s in g good judgement in making d e c is io n s, lo o k in g a t a l l o f th e a v a ila b le a l t e r n a t i v e s and choosing a p p r o p r ia te ly. In s h o r t, in d ep en d en t l i v i n g r e q u ir e s t h a t th e handicapped p erso n be ab le t o have c o n tr o l over h i s own l i f e and to d i r e c t h i s own a f f a i r s a s such a s p o s s ib le. (p. 6) Some w r ite r s of c u r r e n t o c c u p a tio n a l th e ra p y l i t e r a t u r e a r e c a llin g f o r a move away from th e p h y s ic a l- f u n c tio n model of h e a lth t o a more h o l i s t i c o r i e n t a t i o n. Rogers (1982) s a y s : While th e d is e a s e model fa v o rs u n ita r y, e x te rn a l c a u se s, t h e o c c u p a tio n a l perform ance model re c o g n iz e s m u ltip le and m u ltid im e n sio n a l c au ses t h a t may be i n t r i n s i c o r e x t r i n s i c t o th e c l i e n t (p. 3 2 ). Johnson and K ielh o fn er (1983) d is c u s s how o c c u p a tio n a l b e h a v io r and system s th e o ry " g r e a tly enhanced th e f i e l d ' s a b i l i t y to u n d e rsta n d how t h e d is e a s e p ro c e ss and rec o v e ry i s p a r t o f th e dynamic problem o f a much la r g e r system " (p. 189). Johnson (1973), an o c c u p a tio n a l th erap y w r i t e r, seems t o f e e l th a t th e " s o c ia l independence" s tr e s s e d by the in d ep en d en t liv in g movement should be c e n tr a l to o ccu p atio n al th erap y g o a ls : The c r u c ia l t e s t comes when th e in d iv id u a l i s re q u ire d to perform in h is own s o c ia l system. I f we have f u l f i l l e d o u r r e s p o n s i b i l i t i e s a d e q u a te ly, t h e in d iv id u a l should succeed fo r i t w ill be p o s s ib le f o r him and th e s o c ia l system to produce changes and a d a p ta tio n n e c e ssa ry f o r com patible c o e x is te n c e, (p. 3) A tte n d a n t care a s a com pensatory tech n iq u e In a p o s itio n p a p e r on "The R o les and F u n c tio n s of O ccupational with permission of the copyright owner. Further reproduction prohibited without permission.