Adolescents and Young Adults With Cerebral Palsy

7/29/2019 Adolescents and Young Adults With Cerebral Palsy

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Assessment, Training and Employment ofAdolescents and Young Adults with Cerebral Palsy1. An Introductory Review

ELSPETH STEPHENSenior Clinical Psychologist, Chailey Heritage Crafi School and Hospital, North Chailey,

Sussex

MOST f the published work on the assess-ment and management of cerebral palsyhas dealt with children, just as most of themedical, educational and social provisionhas been for cases of cerebral palsy inchildhood. Increasing interest, however, isnow been taken in older people withcerebral palsy. Plans for greater provisionfor their needs are being formulated, andthe first follow-up studies and surveys havebeen published. This seems an opportunetime to see how much is known, and tofind the gaps in our knowledge, so that thestudies so far completed may be used infurther research and planning for cerebralpalsied adults.

This review is concerned only with thevocational guidance, training and place-ment of adults with cerebral palsy, andnot with the medical and social aspects. Itdoes not do full justice to major studiessuch as those of Crothers and Paine (1959)in the U.S.A.,Hansen (1960) in Denmark,and Holeran (1955) in this country.Incidence and PrognosisIn children the incidence has beenestimated at 1-2 per 1,000 children ofschool age (Dunsdon 1952). There are nofirm figures for adults. A subcommitteeformed to study the special welfare needsof cerebral palsied persons over 15 years ofage, who would fall within the scope

of Section 29 of the National AssistanceAct, put the incidence in the region of 0.5per 1,OOO of the adult population. Thiswould make about 17,000 cases in Englandand Wales (Ministry of Health 1953).

Of mentally deficient cerebral palsiedpatients of all ages, Kirman (1960) writes:The proportion of cerebral palsied casesin mental deficiency institutions will be lessthan 9.5 per cent of the whole, or some6,000 in England and Wales-even lessinformation is available about mentaldefectives under supervision and/or inhospital. It may be that there are some7,000 further cases of cerebral palsyamong mental defectives in the community,making a total of 13,000. Further elucida-tion is very necessary as this estimate islittle better than guesswork.

Life Expectancy-Crothers and Paine(1959) found a death-rate of 14 per centamong their sample of 847 cerebral palsiedbabies born in 1916-1955. They concludethat The majority of the cerebral palsiedhave a considerable life expectancy.Placement of Adults in Open Employment

Chailey (1959): Of a sample of 32 fairlyseverely handicapped school leavers withcerebral palsy born in 1939-1943, it wasfound that 9, or 28 per cent, were in openemployment. One of these was articled toa chartered accountant and the rest were

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CEREBRAL PALSY BULLETIS Vol. 3, N o. 2, 1961doing unskilled or semi-skilled hark.There were none with an I.Q. under 70 inopen employment.

L e d s (1955): Of a sample of 78 youngpeople over I5 years with cerebral palsy,born in 1932-1 939 (including 15 excludedfrom school a$ ineducable bu t omitting 9who could not be traced) 35, or 45 percent, were in open employment. Of these.20 were herniplegics, 29 had left normalschools (therefore being presumably onlyslightly handicapped), 10 were doingclerical wo rk, 6 were in distributive trades,16 in skilled or semi-skilled work, 4 inunskilled work and 5 in open employmentha d I.Q.s under 70 (8 were still at school).

Midlands (Ministry of Health, 1953,Appendix iii, Midlands Spastics Associa-tion): Of a sample of 385 young peopleover 15 years with cerebral palsy, therewere 102 in normal work, 4 housewives,28 still at schooi, and I2 in training.Appendix iv of this Ministry Circulargives details of the types of work under-taken by 98 people with cerebral palsy,and the nature a nd degree of their handicap.

Eustrriz Scotlund (M air 1960): Prof. A.Mairs important paper describes onesection of a very complete investigationcarried out i n Eastern Scotland to ascer-tain the extent of cerebral palsy in a totalpopu iation of 410,360 unde r 21 . The wholeinvestigation included medical, psycho-logical, orthopaedic, blood-group, dental,and ear, nose and throat studies, withparticular reference to hearing an d speech.The survey revealed 240 cases accepted bythe paediatrician as satisfying certain rigiddiagnostic criteria of cerebral palsy, andthis gave a prevalence of 2.04 per 1,000.This paper is concerned with one aspectof the social side of the investigation-theopportunities for and success attained inobtaining and holding employment afterleaving school. The d ata were collected bya social worker from 48 cerebral palsiedyoung adults between the ages of 15 and

21. classified as mild. moderate or severein terms of handicaps. This method ofclassification was applied to all the 240cases of cerebral palsy studied. Themethods great advantage is that, withinthe total investigation. studies relating tosub-samples. such a s the present study, orto aspects of the whole investigation, suchas Ross Mitchells Medical aspects of acomprehensive survey of cerebral palsy(th is Bulletin, 1959, Vol. 1, No. 7, pp. 32-41), are strictly comparable in respect ofclassification. Its disadvantage is one thatbedevils most of the published surveys ofcerebral palsy: that, given a prevalence of2 per 1.O00, even regional surveys like thisyield such small sub-groups that one wantsto compare them with other surveys, andthis is difficult because th ere is no commonclassification system . In fac t, in the presentsurvey one can compare the number ofthe 48 who were in employment with thenumber employed in other surveys, butone cannot draw any firm conclusionsabout the numbers employed in the mild,moderate and severe categories. The totalnumber in open employment in this studyis in fairly close agreement with the find-ings in the Leeds and Denmark surveys(see below) and therefore slightly higherthan in most other surveys.Professor Ma ir also makes an imp ortantpoint in his discussion of the difficultiesinherent in comparative employment stud-ies, when he writes perhaps a morerealistic approach (than reporting thenumber in employment) would be toclassify spastics into those who are poten-tially employable and those who are not.Judging by the high quality of thisarticle and that of the earlier one byMitchell, and Miss Cockburns papers onthe psychological aspect of the survey, thepublication of the whole investigation willbe a major contribution to our knowledgeof cerebral palsy. It is to be hoped that itwill be published very soon.

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Vol. 3, No. 2, 1961 CEREBRAL PALSY BULLETINAmerica: (a ) Crothers and Paine (1959),in their follow-up, found th at 61 out of 138adults with cerebral palsy (26 per cent)

were in open employment.(b) The same authors (loc. cit.) foundth at hemiplegics were the most frequentlyemployed diagnostic group. Out of 94adult hemiplegics, 27were either workingor employed as housewives. Their em ploy-ment was comparable to that of unhandi-capped people of comparable intelligence.Of 37 adu lts with extra-pyramidal cerebralpalsy 14 were employed. Here factorsother than I.Q. were relevant, and severalwere in job s below their potential. Non e of49 adu lt spastic tetraplegics were employed.None of 38 patients with mixed typecerebral palsy w ere employed.Denmark (Hansen 1960): Of 1,127patients over 15 years of age, 478 wereemployed (247), or housewives (51) or intraining (175). Hansen therefore estimatedth at 35 per cent of cerebral palsied patientswould manage socially and economicallyif 50 per cent of trainees were successful,an d if the housewives were included in theeconomically and socially independentgroup. This is comparable with Dr.Halorans figure (Leeds). Hansen says thatthe percentage is higher than that pre-sented in most surveys because in hissample were patients with slight motorhandicaps. He gives details of the type ofwork undertaken, and two very usefultables relating, amo ng 245 patients:(a) the disease type to employm ent;( b ) degree of motor handicap to employ-

(a ) Disease Type and E mployment: Likethose of other workers, his figures showthat cases of mono- or hemi-plegia arethe most frequently employed, followedby paraplegics. The quadriplegics andathetoids have the poorest chances ofemployment.(b) Degree of Motor Handicap andEmployment: Hansen used 4 grades of

ment.

C

motor handicap. He found that about90 per cent of employed adults withcerebral palsy were grade I (slight motorhandicap), but he points out that 10 percent of cerebral palsied adults withmoderate or moderate to severe motorhandicaps were employed.Comments: At best, 35-40 per cent ofcerebral palsied adults are now in openemployment. In some areas the figure islower than this; therefore it seems thatmore cerebral palsied adults could beemployed, given the conditions and pro-cedure described in the surveys (such asLeeds) where the employment rate ishighest. Wh en low intelligence s associatedwith cerebral palsy, this is a further bar toemployment, but in cases of athetosis andquadriplegia the physical condition seemsto be the main bar.The proportion of cerebral palsiedadults who are in employment varieswidely in different parts of the country.Leeds and the Midlands probably have thebest figures because they have goodservices and a wide range of availableemployment. The Chailey figure of 28 percent is based on a very small sample, butit m ay indicate the chances of employmentin fairly severely handicapped cases ofcerebral palsy. In Scotland (Coventry1960), out of 180spasticsaged 16-45 years,referred because they were severe enoughto merit special education and/or medicaltreatment, only 17 per cent were in openemployment.Vocational Guidance and TrainingA t Home. I have been unable to find anysubstantial results of vocational guidanceor training published in this country, butthere is a concensus of opinion that bothare necessary. Specialist advice on employ-men t seems to be fairly widely used-thus,at Chailey and Leeds all cerebral palsiedschool leavers are advised by a panelwhich includes doctors, teachers, social

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CEREBRAL PALSY BULLETIK Vol. 3, No. 2, 1961M orkers and youth employment officers.In Leeds. 4 spastics in open employ-ment had been traine d; at Chailey 4 are intraining now; and in the Midlands thereare 12 spastics in training. Of 65 adultswith cerebral palsy who attended theMinistry of Labours Industrial Rehabilita-tion Units courses, 5 began hork afterleaving the unit.This may not give a representativepicture of the general situation now. Outof 221 young adults with cerebral palsyreferred to th e N.S.S.Employment Officer.69 have been accepted for training (MissM . R . Morgan, personal communica-t ion) .Abroad. Hansen (1960) quotes Curtissfollow-up of 202 cerebral palsied adultswho had received occupational advice andhelp from the department of vocationalassistance of the United Cerebral PalsyAssociations in New York in 1951-1953.Of these 52 were placed in a trade, advicewas given to a further 11 1, and 35 couldnot be helped, mainly for psychologicalreasons. It is difficult to interpret thesefigures. What happened to the 111 whowere advised? Hansen also quotes Bohne,who found that out of 158 patientsconsidered suitable for training in socialwelfare institutions, only 46.8 per centcompleted such a training, and only16.4 per cent rem ained in the professionSor which they were trained.I n Hansens sample in Denmark. out of1 . I27 spastics. I75 were under training,70 of whom were given training in handi-craft. At least half of the 70 were unable tocomplete the training to a satisfactorydegree. Private firms trained 83 patientsfor a trade; 25. or 30.1 per cent. did notcomplete training. In a Danish VoluntaryCripples Centre, 123 patients receivedtrade training; 77 . or 62.6 per cent, did n otcomplete training. Therefore, 49.5 per centhave not completed training for the tradewhich they had begun. Purely commercial

training was commenced by 30 patients,and only 6 did not complete this. Officetraining was take by 85 patients, and 17were unable to complete this. Of the 27who took a trade school training in asso-ciation with office training, only 2 did notcomplete it. The reasons for the failure ofthese 19 was said to be a combination offeelings of inferiority, inability to con-centrate and prolonged reaction time.Hansen says these three factors arefrequently found in combination, andseem impo rtan t in younger ad ult spastics.In summary, Hansen says that whilemore than half completed trade training,80 per cent completed office training-butthe criteria of selection for training foroffice work were higher than for tradetraining. Of those given professionaltraining, 13 spastics were trained asschoolteachers, and 3 of them were unableto complete the course. Out of 11 whowent to universities only 2 failed tocomplete the course.

Comments: The available figures nowshow a wastage in training of about50 per cent. It may be that at present thislarge wastage is inevitable and must beaccepted, and that this is the best we cando in the selection of candidates fortraining . How ever, the figure of 50 per centmay already be an overestimate becausethe new methods of training and guidancewhich have been introduced have not yetbeen evaluated.More facilities for training and voca-tional advice are needed now, a nd bo thvocational advice and training could beimproved by a study of existing methods.The efficiency of methods of trainingcould be examined by comparing trainedand untrained patients in the sameoccupation (Hansen 1960).Spastics not in Open Employmentopen employment there are:Chai lq , (total group 32): Of 23 not in

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Vol. 3, No. 2, 1961 CEREBRAL PALSY BULLETINAt home . . .. .. . . . . 7In training or school . .. . . 5In sheltered wo rk .. . . 8In occupation centre of Gspital . . 3Leeds (total group 78): Of 42 not inopen emp loyment there are :Notified to M .D . authority before age 15( ? present placem ent) . . . .. 15In mental hospital . . .. .. 2In occupation centre .. . . . . 2In sheltered workshop . . . . . 1Presumably at home ( ? unoccupied) . 14At school .. . . . . .. . . 8Midlands (total group, aged 15 yearsand over, 385): Of 279 not in openemployment there are :At school .. . . . . . . . . 28

Denmark: Of 1,127 spastics over th eage of 1 5 years, Han sen (1960) found that649, or m ore tha n half, were unemployed.Of these, 37 were estimated to requirepermanent residential care, and 9 to besuited for a residential home with training;154 were said to be suitable for p eriodicalstays at an occupational centre withearning periods; 154 required a shelteredworkshop placement; 303 were fit to bedealt with as mental defectives; 144 weresuitable for training for occupations; 68required National Assistance and side-line earnings. The actual number thatHansen estimated to need permanentresidential care was small-37 ou t of 1,127.

Comments: We must expect at leastUnder ho me teacher . . . . .. 6 70 per cent of cerebral palsied adults tobe unfit for open employment. We needn occupation centre . . . . . 23In training. . . . . .. . . 12In outwo


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CEREBRAL PALSY BULLETIN Vol. 3, No. 2 , 1961( c ) A study of the methods and results (elof existing services an d centres.(cl) A study of job analysis and job

placement now. This was suggestedby the Sub -com mittee on the SpecialWelfare Needs of Spastics in theMinistry of Health Circular 26/53. __

Counselling o r prep aratio n of cerebralpalsied schoolchildren an d parents inreadiness for adult life, particularlythe severely handicapped, quadri-plegics and athetoids w ho are unlikelyto m ake open employment.

Acknonledgements: I would like to thankWe need to revise O ur Prof. Paul E. Polani who suggested this review,periodically of the Placement of Dr. Irene Holoran and Dr. Jack Tizard for theiradult cerebral palsy patients, as comments, Dr. E. P. Quibell for permission toquote the Ch ailey Heritage figures, and M iss M . R .there will be changes affecting this. Morgan for the National Spastics Society figures.

S U M M A R YThere are n o firm figures for the prevalence of cerebral palsy in adults, b ut an approximatefigure is 0.5 per 1,OOO in the general population.Abou t 25 per cent of these adults with cerebral palsy are in o pen employm ent, bu t thereare wide variations in the published figures, implying that different degrees of handicap areincluded in the different samples, and/or that there are considerable variations in thefacilities and conditions of employment in different areas.Monoplegics and hemiplegics are the types most frequently employed, followed byparaplegics. Q uadriplegics and athetoids have th e poorest chance of employment a t present.When cerebral palsy is associated with lo w intelligence or other handicaps these constitutea further ban to employment.There is little published evidence so far o n the results of vocational guidance and trainingin this country. The Am erican an d D anish surveys indicate a large wastage in training (atleast 50 per cent). This may now be unavoidable b ut suggests that new m ethods should beinquired into.There is clearly a need for increased facilities for training and vocational advice.Since abou t 70 per cent of adults with cerebral palsy are not in open employment, the(1 ) A more careful analysis of available data on the present placement and conditions of(2) A study of the methods and results of existing services and centres.(3) A study of jo b analysis an d jo b placement now.( 4 ) More counselling or prepara tion of cerebral palsied schoolchildren an d their parents,with special attention to the severely handicapped who are unlikely to obtain openemployment.

followjing steps are suggested:cerebral palsied adults, particularly those living at home and presumably unoccupied.

R ES U MERevue des Ptutles sur les enckphalopathes au-dessus de Ibge scolaire.

II neexiste pas de donnees certaines sur la frequence de IencCphalopathie chez lesadultes, bien quon puisse admettre le taux de 0.5 per cent comm e chiffre approximatif. LIy a probablement 1-2 Fer cent denfants enctphalopathes dBge scolaire. Environ 10 p ercent de ces enfants, deficients mentaux, sont places en institutions.

La plupart des Ctudes sur les spastiques exerqant des emplois libres font penser que25 per cent environ sont dans cette situation; cependant ce chiffre varie sensiblement soit132


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Vol. 3, No. 2, 1961 CEREBRAL PALSY BULLETINque des degrks de diminution essentiellement differentes sont compris dans les tchantillons,soit quil existe, dans les diffkrentes regions, des variations considkrables dans lacces etles conditions demploi.

I1 parait evident que les monoplegiques et les h6miplCgiques sont le plus frtquemmentemployks, les paraplkgiques venant ensuite. Les quadriplkgiques et les athetoides ont leschances demploi les plus limitkes. Une faible intelligence et dautres handicaps associks alenckphalopathie viennent entore restreindre lemploi de ces sujets.I1 existe pour le moment dans notre pays peu de donnkes sur les rksultats de lorientationet de la formation professionnelles. Lttude de Hansen sur les Ctudes amkricaines etdanoises indique un rebut important en cours de formation (au moins 50 per cent). Celapeut Ctre actuellement inevitable mais suggtre la nkcessite divaluer les nouvelles mkthodesnon encore Ctudikes.I1 est clair que lon doit donner plus de facilitis pour la formation et lorientation

professionnelle.Etant donne que 70 per cent denckphalopathes nexercent pas demplois libres, lesrecommandations suivantes semblent simposer:(1) Analyse plus poussee des donnCes existant sur le placement et les conditionsactuelles dadultes encephalopathes, surtout de ceux qui restent chez eux et qui trtsprobablement ne travaillent pas ;(2) Etude des mkthodes et des resultats des services et des centres existants;(3) Gtude portant sur lanalyse et lattribution des tiiches aujourdhui en vigueur (etudeproposCe par le Sous-ComitC sur les Besoins de Protection Speciaux des Spastiques,Circulaire 26/53 du Ministke de la Santk).(4) Davantage de conseils ou de prkparation dkcoliers enckphalopathes et de leurs

parents en vue de la vie adulte, surtout des enfants gravement atteints et qui ne pourrontpas sans doute acceder aux emplois libres.

ZUSAMMENFASSUNGueberschritten habenEs gibt keine sicheren Angaben uber die Verbreitung der Zerebrallahmung bei Erwach-senen, obgleich 0,5 prozent als annahernde Zahl gelten kann. Es gibt wahrscheinlich

1-2 prozent Kinder in Schulalter mit Zerebrallahmung. Ungefahr 10prozent dieser Kinderbefinden sich in Anstalten fur geistig Beeintrachtigte.Die meisten Studien uber Spastiker die einen freien Beruf ausiiben deuten an, dass essich um ungefahr 25 prozent handelt aber diese Zahl ist sehr veranderlich, was daraufdeutet, dass wesentlich verschiedene Beschrankungsgrade in den Proben einbegriffen sind,oder dass es in den verschiedenen Gegenden betrachtliche Unterschiede in den Anstel-lungsmoglichkeiten und-Bedingungen gibt.Es scheint klar, dass Patienten mit Monoplegie und Hemiplegie am haufigstenangestellt werden, dann kommen Patienten mit Paraplegie. Patienten mi Quadriplegieoder Athetose haben die geringste Moglichkeit, eine Stellung zu bekommen. WennSchwachsinn oder andere Defekte mit Zerebrallahmung verbunden sind, bilden sie einweiteres Hinernis fur Anstellung.Bis jetzt gibt es in unserem Lande wenig Angaben iiber die Ergebnisse der Berufs-beratung und- Ausbildung. Hansens Uberblick iiber amerikanische und danische Studien

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Durchsicht der Studien ueber Patienten m it Zerebrallaehmung die das Schulater


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CEREBRAL PALSY BULLETIN Vol. 3, No. 2, 1961zeigt einen grossen Abfall bei der Ausbildung (mindestens 50 prozent). Jetzt ist diesesvielleicht unverrneidlich aber es deutet an, dass es notwendig ist, die neuen, noch nichtstudierten Methoden, abzuschatzen.

Es ist klar, dass vergrosserte Erleichterungen fur Ausbildung und Berufsberatungnotig sind.Da ungefahr 70 prozent der Patienten mit Zerebrallahmung keine offene Berufstatigkeitausiiben, scheinen folgende E mpfehlungen angemessen :( 1 ) Eine sorgfaltigere Analyse der vorhandenen Angaben iiber die Unterbringung unddie jetzigen Lebensedingungen der Erwachsenen mit Zerebrallahmung, vor allem derer,die zu Hause bleiben und wahrscheinlich nicht arbeiten.( 2 ) Ein Studium der Methoden und Ergebnisse der vorhandenen Anstalten und Zentren.(3 ) Ei n Studium der PIrbeitsanalyse und Arbeitszuteilung. Dieses wurde vom Unter-komitiit fur spezielle Wohlfahrtsbedurfnisse der Spastiker im Zirkular 26/53 des Gesund-heitsministeriums vorgeschlagen.(4) Mehr Beratung oder Vorbereitung der Schulkinder mit Zerebrallahmung und ihrerEltern fur ihr Leben als Erwachsene vor allem der schwer befallenen Kinder, diewahi scheinlich keine offene Anstellung erreichen werden.

REFERENCESCoventry, J . S . (1960) Vocational guidance for spastics. Spastics QimrterIy, 9, 18-23.Crothers, B., Paine, R. (1959) The Natural History of Cerebral Palsy. London: Oxford University Press.Dunsdon, M . J. (1952) The Educability of Cerebral Palsied Children. London: Newnes.Hansen, E. (1960) Cerebral Palsy in Denmark. Copenhagen: Munksgaard.Holoran. Irene. (1955) The employability of cerebral-palsied young people. Me d. Ofr., 94, 337.Mair, A. (1960) Cerebral palsy and employment experience in Eastern Scotland, Rehabilitation, October-Ministry of Health. (1953) Circular 26/53, Welfare of Handicapped Persons. The Special Needs of Epileptics

December. pp. 37-44.and Spastics. London: H . M . Stationery Office.

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Adolescents and Young Adults With Cerebral Palsy

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