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Develop. Me d. Child Neurol. 1917, 19, 803-810

An Assessment of the Status of Adults withCerebral PalsyGavin Andrews L. J. P l a t t P. T. Quinn P. D. Neilson

IntroductionThe plight of the cerebral-palsied childhas been the stimulus for much rehabilit-ative effort. In most countries specialisedcentres have been constructed in which thefull force of rehabilitation medicine andspecial education have been deployed tominimise the consequences of the perinataldamage to the central nervous system.The plight of the cerebral-palsied adult,on the other hand, appears to have passedunnoticed; certainly it is undocumented.This paper is an attempt to remedy thisoversight. The aim of our research was togather information on the health andwell-being of 50 adults with cerebral palsywho, having received intensive rehabilita-tion and education during their formativeyears, had graduated to a work-trainingunit housed in an electronics manufactur-ing firm. This industrial enterprise hassuccessfully completed telecommunicationcontracts gained on the open internationalmarket. In maintaining a normal workenvironment, the facility meets the criteriaestablished by Gray (1972) as beingnecessary to develop or maintain the workand social skills of institutionalized people.

Vaillant ( I 974) examined the adultadjustment of 100 very healthy college menin terms of physical health, psychological

health, social adjustment and work success.Similar measures were included in thepresent study to assess the adult adjustmentof 50 very handicapped men. There weretwo specific aims: (1) to examine theircurrent status in terms of the physicallimitations on self-care and mobility, ofevident neuromuscular handicap andspeech disorder, and of psychologicalhealth; and (2) to describe the socialadjustment and work success of these 50men and determine the relationship be-tween the measures of disability and theselife-style measures.MethodPatientsThe Spastic Centre of New South Wales,Australia, conducts an industrial enter-prise to which people with cerebral palsygraduate when they reach adulthood. Fromthis pool of 200 cerebral-palsied people,all men believed to have intelligence andhearing within normal limits were referredfor assessment (N = 65). Those for whomthe diagnosis of cerebral palsy was indoubt, and those with IQ S below 60 or whohad no verbal speech or with bilateralhearing loss (determined by audiometricpure-tone values > 30dB over 0.5 to8kHz) were excluded (N = 15).

Correspondence to Dr. Gavin Andrews, Human Communication Laboratory, University of New SouthWales, Prince Henry Hospital, Little Bay, N.S.W. 2036, Australia.803

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DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. 1977, 19

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The ages of the remaining 50 menranged from 17 to 55 years (mean 28years). Five were married. Four wereliving in their own homes, 23 with theirparents and 18 in hostel accommodation.32 of the men were diagnosed as spastic,18 as athetoid; 17 had evidence of bothsyndromes and were classified accord-ing to the dominant syndrome. 39 hadnormal hearing, the remainder showingvarying degrees of mild hearing-loss. TheirIQS ranged from 62 to 118 (mean 83). Thepurpose of screening for rQ was to excludethe more severely mentally handicappedmen who would not have been employableeven if there had been no additionalneuromuscular disorder, but to includethose dull or backward men who con-ceivably would have been employable hadthere been no spasticity or athetosis.Raven Progressive Matrices were used asthe screening test (Raven 1956). It isdifficult to assess the specific factor ofintelligence in people with diverse per-ceptual and cognitive handicaps withoutusing an elaborate battery of tests. It ispossible that those with specific perceptualdeficits will have difficulties with theparticular form of test we used and thusattain scores below their optimal level offunctioning. Accordingly, the lower boun-dary of IQ for the employable group wastaken as 60 rather than the usual 70.Assessment o Current StatusFour measures were taken of the degreeof physical disability. Items on the dis-ability scale constructed by Garrad andBennett (1971) were divided into twosub-scales which measured self-care andgeneral mobility. Numerical values weregiven to each item and each individualscored in terms of his degree of success inindependent self-care and mobility. Scoreswere expressed as a percentage of fullyindependent behaviour. The third measurewas the mean of visual analogue scale

scores for disability, as rated by fourmembers of the medical and supervisorystaff of the workshop. The fourth measurewas a rating of neurological impairment,as judged by the examining physician. Thefirst three measures were found to behighly intercorrelated and were condensedfor subsequent computations by summingthe standardized scores to form a singlemeasure of physical disability. Detailedresults were given for five men selectedfrom the sample on the basis of theirscores on this single measure of physicaldisability, and these men represent themean, upper and lower quartiles andextremes of the range.Speech was assessed by measuringsingle-word intelligibility, prose intelligi-bility, articulation error and diadocho-kinetic rates. A visual analogue scale ofspeech handicap was also completed bythe workshop staff (Platt et al. 1977).Factor analysis showed that all thesemeasures intercorrelated highly and loadedo n a single factor. Single-word intelligi-bility accounted for 73 per cent of thevariance and was chosen as the singlemeasure of speech intelligibility. For thismeasure, each man recorded a phoneticallybalanced list of 50 monosyllabic words.The intelligibility index for each individualwas the mean percentage of words cor-rectly identified by three independentjudges.

Estimates of psychological health wereobtained from a 30-item general healthquestionnaire (Goldberg 1972), which wasinterviewer-administered. A visual ana-logue scale of adjustment to cerebralpalsy was also completed by the workshopstaff. These two measures were significantlyintercorrelated and the general healthquestionnaire score was chosen as theindex of mental health for further com-putations because of its proven validityand reliability.

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GAVIN ANDREWS L. J . PLATT P. T. QUINN P. D. NEILSONAssessment of Life AdjustmentWork achievement was measured bythree indices: the salary paid to the manby the workshop, the social status of hisoccupational title and his level of respons-ibility within the workshop. The restrictedrange of the last two indices made themless valuable than the first for differentiatingwithin the group, so salary was used as themeasure of work achievement.Social adjustment was assessed by threemeasures selected from a larger battery. Inthis battery the men were asked how manyfriends outside the workshop they hadbeen in contact with in the previous week,how many organised social events theyhad attended in the past month, theirmarital status and the independence oftheir living arrangements, and the extentof their social resources from friends andfamily. A visual analogue scale of socialparticipation was also completed by theworkshop staff. The first two scores andthe visual analogue scale were found to behighly intercorrelated and were condensedinto a single measure of social adjustmentby summing the standardized scores.Case HistoriesCase histories of five of the 50 men arepresented to illustrate the nature of theclinical sample. The five were chosenaccording to their scores on the standard-ized measure of physical disability, andrepresent the mean, upper and lowerquartiles and extremes of the range. (Detailsof all 50 men are given in Table 111).CASE 48

Most severely disabled. Diagnosis: tensionathetosis. Age 22 years. Birth: First child ofmiddle-class teachers. Forceps delivery afterprolonged labour. Was not expected to survive:tube-fed for 30 days. Development: Noted to havepoor hand and leg control at I 1 months. Includedin Spastic Centre mother and baby programme.At two years was able to stand in frame but unableto walk. At three years had single words; couldstand in calipers. Never developed useful hand or

leg movements. Any attempt at voluntary move-ment followed by massive tension and involuntaryscissoring of legs and arms. Schooling: Assessedas being of normal intelligence; was able t o manageelectric typewriter by means of headpiece pointer.Present status: Travels to sheltered workshop byspecial bus each day. Unable to do useful work.Lives with parents and is totally dependent onothers for all functions. Cheerfulness and brightmanner, coupled with parents' devotion, haveensured that he has considerable social contactdespite the extent of his disability.CASE 27

Upper quartile for disablement. Diagnosis :athetoid quadriplegia. Age 21 years. Birth: Twinbirth and second child of well-to-do countryfamily. Co-twin died on day 3 . Had Rh incom-patibility; jaundiced for six weeks, never trans-fused. Development: Brought to Spastic Centre atone year because of failure to sit and tension inarms and legs. Stood and walked in calipers bysix years; able to walk but unable to feed himselfat 16 years. Schooling: Made only limited progressin Spastic Centre residential school. Present status:Lives in Spastic Centre hostel and is occupied insheltered workshop. Able to walk on level groundbut involuntary movements and poor hand-controlpreclude any useful activity, particularly whencoupled with his severe myopia. Has no usefulspeech. Social isolation is lessened by his residencein hostel.CASE 19Mean disablement score. Diagnosis: spasticquadriplegia. Age 18 years. Birth: First child ofcountry labourer. 'Mother had toxaemia, labourwas prolonged but child appeared to be normal atbirth. Six hours later a cerebral cry was heard,there was twitching in the right hand and leg anda period of hyperpyrexia followed. Perinatalcerebral damage resulting from haemorrhage wasdiagnosed. At 10 weeks he showed ankle clonusand increased reflexes. Development: At one yearcould not sit alone, showed reflex spread of tensionand scissoring with voluntary movement. By agenine years could walk 50 feet with calipers,manage stairs with aid of a rail and was judged tohave 50 per cent fine hand function. Spoke singlewords by 2) years. Schooling: Progress was slow,despite mastering use of electric typewriter: at 16years was still doing first-year high-school work atremedial standard. Never developed intelligiblespeech. Present status: Has been in shelteredworkshop for one year. Despite his physicalcapacities it has not been possible to integrate him

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DEVELOPMENTAL MEDICINE A N D CHILD NEUROLOGY,977, 19into Spastic Centre Industries because of his poorconcentration. Lives at home with parents andtravels to centre by special bus every day.CASE 40

Lower quartile for disablement. Diagnosis:spastic quadriplegia. Age 26 years. Birrh: Secondchild of middle-class business family. Born afterprolonged labour, posterior presentation; noted tohave cord around neck and to be difficult toresuscitate. Appeared to be normal by 12th day.Development: Abnormality suspected at ninemonths; did not sit up until 17 months. Walkedat four years on broad base with feet internallyrotated. Given calipers at eight years; had teno-tomy of left psoas at 15 years. Fair co-ordinationand power in all limbs. Schooling: Entered SpasticCentre school at four years; progressed normally,completed external examination for schoolcertificate, then electronic engineering certificateat technical college. Present status: Works inSpastic Centre Industries as quality control officerfor electronics workshop. Married to girl withathetosis; they have their own home. Drives a carand is socially independent. Obvious physicaldifficulty with precise arm and leg movements.Can walk on level ground for 400 yards and canmanage one flight of stairs. Dysarthria evident;speech intelligible but slow.CASE 24

Least disabled. Diagnosis : spastic hemiplegia.Age 35 years. Birth and Development: Little isknown about this mans history. He was admitted

to Spastic Centre workshop at age 22 years.History of congenital hydrocephalus, retardedmental development and epilepsy. In normalschool system until age 13, then at home for 10years doing nothing. Had shunt diversion at age28 years. Present status: Works in Spastic CentreIndustries, sorting semiconductors. Is single,lives at home with middle-class parents and travelsto work by public transport. Has little social life.Has mild spastic gait, bilateral tremor, evidence ofmild left hemiplegia. Speech is consistent withintelligence.

ResultsThe measures of central tendency of thescores for the various items are given inTable I. A correlation matrix of thederived score for physical ability, thescore for speech ability, the score formental health and the life adjustmentscores for work and social participationare presented in Table 11.The self-care sub-scale measured whetherthese men could feed, dress, undress, washand use the toilet without assistance, orwith specified degrees of assistance. Theaverage patient could only function withhelp o r in specially prepared circumstances,so they would not be capable of beingindependent in the outside world wheresuch activities are taken for granted. The

TABLE ICharacteristics of 50 adult men with cerebral palsyI Mean

Indices of current statusDisability level:self-care (normal = 100)mobility (normal = 100)VAS* disability (massive = 1 , minor = 7)neurological impairment (none = 0, severe = 3)speech intelligibility (normal = 100)Indices of life adjustmentPsychological impairment (normal = < 4)VAS* adjustment to cerebral palsy

(adjusted = 7, frustrated = I )Work pay-rate (dollars per week)Social life:number friends contactednumber organized activitiesVAS* social life (full = 7, isolated = 1)

795742.151

3.55.325.02.41 .54.3

SD

25311.30.829

5.6I .o2.62.91 . 1

Range

0-994-951-61-30-900-242-71-1350-90-4

i 2-6* VAS = visual analogue scale

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GAVIN ANDREWS L. J. PLATT P. T. QUINN P. D. NEILSONTABLE I1

Correlation of disability and l ife adjustment variablesII Disabilityi Speech ~ Physical 1 Mental

DisabilitySpeechPhysicalMentalWork pay-rateSocial participation

Life adjustment

-1- l -0.29* I - 1 --0.01 , -0 .18 I -0.16 0.39* ' -0.110 .15 ' 0.46* ~ -0.20I

* p < .05

mobility sub-scale established the extent ofwalking with and without assistance.This estimation of disability was rein-forced by the visual analogue scale results,in which the mean score of the group wasindeed the midpoint on the scale andindicated a moderate degree of disability.To some extent this was an artefact of thepopulation under study, the extremes ofphysical disability being fixed by their bestand worst members.The extent of speech intelligibility wasof considerable interest. Single-word in-telligibility of a normal speaker wasestimated to be between 80 and 100 percent (mean 97 per cent), as judged by 50naive listeners. In connected prose there-fore, grammatical redundancy wouldensure 100 per cent intelligibility for thenormal speaker. In contrast, the cerebral-palsied group's average score showed thatonly one word in two was intelligible. Itis doubtful that connected prose would beintelligible, therefore, and unlikely that aperson with such a handicap would beable to express more than his most basicneeds and wants. The distribution ofintelligibility scores was flattened, 25 percent of the men having an intelligibilityapproaching normal levels and 20 per centhaving virtually no intelligible words.Evidence reported elsewhere (Platt et al.1977) shows that athetoid patients were

more unintelligible than similarly afflictedspastic patients.The mental health scores were surpris-ing. The 30-item general health question-naire can be used as a case detectioninstrument; those scoring below 4 beingwell and those scoring 4 and above beinglikely to be considered psychiatric cases.25 per cent of the cerebral-palsied metiwere identified as psychiatric cases, whichis identical with the rate found in ageneral adult population (Andrews et al.1977).In summary, all these men sufferedphysical mobility, self-care and speechhandicaps which precluded them fromfunctioning independently in the com-munity. Given that they worked and, to avariable extent, socialized within a shel-tered workshop, to what extent was theirachievement level determined by theirphysical disability or by their psycho-logical impairment ?The correlations between these fiveindices are given in Table 11. Firstly,social and work adjustment were found tobe independent of mental health scores.Presumably the minor levels of anxietyand depression detected by the generalhealth questionnaire, and of real con-sequence in the normal individual, did notaffect work or social achievement, despitemassive physical disability.

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GAVIN ANDREWS L. J. PLAT1

The level of physical disability wasdirectly related to work and social adjust-ment, the less disabled being moresuccessful. An interesting finding, in viewof the fact that the speech handicap of thecerebral-palsied is often seen as limitingthe expression of an active mind, was theweak relationship between speech com-petence and work or social success. Thisfinding was unexpected and is probablyevidence of the detailed care with whichthe Spastic Centre of New South Walesattempts to understand the needs of eachindividual and to place him in a compatiblework and social environment.ConclusionsThe cerebral-palsied child with multiplehandicaps may, without energetic re-habilitative effort, develop into an adultencased in contractured limbs and anuntutored mind. With energetic rehabilita-tion, and despite the continuing presence

P. T. QUlNN P. D. NEILSON

of severe intellectual, sensory, speech andmotor handicaps, they will be able tocontribute useful work to society, live ameaningful social life and experience thepeace of mind of their more fortunatecompatriots.

Acknowledgements: This work was supported bythe National Health and Medical ResearchCouncil of Australia, the Ramaciotti Foundationsof New South Wales and the Spastic Centre ofNew South Wales. We are grateful to the men whoco-operated so willingly in the assessment pro-cedures.

AUTHORS APPOINTMENTSJ. G. Andrews, M.D., F.R.A.N.Z.C.P., M.R.C.Psych., Associate Professor of Psychiatry; Direc-tor, Human Communication Laboratory; PrinceHenry Hospital, Sydney, N.S.W., Australia.L. J. Platt, Ph.D., Director, Department of SpeechPathology, The Hospital for Sick Children, 555University Avenue, Toronto, Canada.P. T. Quinn, M.B., B.S., Ph.D., Project Scientist,Human Communication Laboratory, Prince HenryHospital, Sydney, N.S.W., Australia.P. D. Neilson, Ph.D., Director, Spastic CentreResearch Laboratory, Prince Henry Hospital,Sydney, N.S.W., Australia.

SUMMARYThe physical disability, speech disability and mental health of 50 adult men with cerebralpalsy were measured. Most men needed help with self-care and in moving around, yet wereable to do productive work in a work training unit. On average, only half their words wereintelligible to normal listeners, yet their mental health scores were similar to those found inthe normal population.When their life adjustment was measured in terms of success in work and complexity ofsocial life, it was found to be independent of their speech disability and mental health butdirectly commensurate with the extent of their physical disability.

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RESUMEApprkciation de Iktat dadultes I.M.C.Le handicap nioteur, les difficultes de langage et la santt mentale de 50 adultes masculinsI.M.C. ont CtC apprCciCs. La plupart exigeaient de laide pour leurs soins personnels etleurs deplacements mais etaient capables dun travail productif dans une unit6 dentraine-

ment au travail. Environ seulement la moitiC de leurs mots Ctait comprehensible par desinterlocuteurs normaux et leur scores de santC mentale Ctaient semblables a ceux que Yontrouve dans une population normale.Quand on apprkciait leur ajustement A la vie en terme de travail fourni et de complexitede vie sociale, cet ajustement paraissait independant de leur trouble du langage et de leurCtat mental, mais directement en rapport avec limportance de leur trouble physique.809

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DEVELOPMENTAL MEDICINE AND CHILD NEUROLOGY. 1977, 19Z U S A M M E N F A S S U N G

Eine Beurteilung des allgemeinen Statu s Erw uchsenev init CerebralpareseBei 50 erwachsenen M an ne rn mit Cerebralparese wurden die physische Beeintrachtigung,die Sprachbehinderung und die geistigen Fahigkeiten untersucht. Die meisten Mannerbenotigten H ilfe bei de r Versorgung und u m sich zu bewegen, sie konn ten jedoch pro duktiveArbeit in Beschaftigungszentren leisten. Fur gewohnliche Zuhorer waren etwa nur dieHalfte ihrer Worte verstandlich, der Durchschnitt ihrer geistigen Fahigkeiten entsprachjedoch ungefahr dem der Allgemeinbevolkerung.Wenn man die Anpassung an ihr Leben gemessen am Erfolg bei der Arbeit und amsozialen Leben iiberhaupt beurteilt, so war diese unabhangig von der Sprachbehinderungund den geistigen Fahigkeiten sondern entsprach direkt dem Ausmass ihrer physischenBeeintrachtigung.

R E S U M E NEvaluacioit de l estado de un grupo de adultos con pardisis cerebralA 50 adultos con pardisis cerebral se les midi6 su incapacidad fisica, incapacidad de lapalabra y salud mental. La mayoria de ellos necesitaban ayuda para valerse por si mismosy desplazarse, si bien eran capaces de realizar un trabajo productivo en una unidad deaprendizaje. Como tCrmino medio, solo la mitad de sus palabras eran intelegibles para 10sauditores normales, aunque el puntaje de su salud mental era similar a1 de la poblacionnormal.Cua ndo se midi6 su adaptaci6n a la vida normal, en tCrminos de Cxito en el trabajo ycomplegidad de vida social, se hallo que era independiente de su incapacidad de palabra ysalud mental, per0 en relacion directa con la extension de su incapacidad fisica.

R E F E R E N C E SAndrews, G., Schonell, M., Tennan t , C . (1977) Th e relation between physical, psychological and socialGa r r a d , J. , Bennett, A. E. (1971) A validated interview schedule for use in pop ulation surveys of chron icGoldberg , D. P. (1972) The Detection of Psychiatric Illness by Questionnaire. Londo n : O.U.P.Gray, M. (1972) Effects of hospitalization on work-play behavior. American Journal of OccupationalPlatt, L. .I.,ndrews, G ., Young, M. , Quinn, P. T. (1977) Dysarthria of adult cerebral palsy: intelligibilityRaven, J. C. (1956) Guide to Using Progressive Matrices. L o n d o n : H . K . Lewis.Vaillant, G. E. (1974) Natural history of male psychological health. I I . Som e antecedents of healthy adu lt

morbidity in a suburban community . American Journal of Epidemiology, 105, 324-329.disease and disability. British Journal of Preventive and Social Medicine, 25, 97-104.Therapy, 26, 180-185.and ar t icula tory impairment . Journal o f Speech and Hearing Research, (in press).adjustment. Archives of General Psychiatry, 31, 15-22.

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