Original·artiele 34
Factors Affecting Employability Among Young Adults with Spina Bifida and Hydrocephalus B. Tew 1, K. M. Laurence J, V.]enkins 1 • lUniversity of Wales College of Medicine, Department of Child Health, Heath Park, Cardiff, S. Glam, CF4 4XN, U.K.
A sampie of 98 young adults with spina bifida were interviewed. None had severe learning difficulties. All were resident in S. Wales or the West of England. Only a third were in open competitive employment, mainly of a clerical nature. Their incomes fell weIl below average British earnings. Comparing those in work with the unemployed showed they differed significantly according to intelligence, academic qualifications, continence, behaviour, overall disability score and plaee of residence. The non-discriminating factors are listed and the implications of the findings discussed.
Key words Spina bifida - Hydrocephalus - Employment
Our sampie was drawn mainIy from hospital reeords and quite fortuitously was composed of an equal number of males and females. Unexpectedly, we encountered a large number of refusals (about 75) to paItieipate in our study - many from individuals we knew to be severely physically handicapped and, thus, our sampie may not be representative of the spectrum of disability found among persons with spina bifida, particularly as we excluded also those with severe learning difficulties.
Results Introduction The large number of surviving persons born with spina bifida in Britain in the 1960's as a result of adopting an aggressive policy of surgical care, will have left school and their destinies as adults should be becoming clear. In this paper we report some aspects of a substantial study of young adults surveyed in 1988-1989. We looked at many areas of their lives such as their work, health, sexual and social relationships. This paper focuses only upon employment. Aims, materials and methods Six fieldworkers gathered the data: this involved administering a detailed structured questionnaire, lasting around two hours or more, to the young adult. If the young person was living at horne, their caretakers were separately interviewed. Each parent was asked to complete the GHQ 30 inventory (3), known to be a reliable and valid means of screening for psychiatrie disorder. The fourth area of enquiry was concerned with such maUers as the subject's self-reported anxiety and depression, and attitudes to their handicap. As we did not have the resources to have medical examinations we made do instead with an assessment of physical functioning known as the Pultibec scale (6). This proeedure which evaluates physical, behavioural and sensory funetioning, has been used in several British studies involving handicapped persons (1, 10). Our overall sampie of 98 consisted entirely of persons with a myelomeningoeele, mostly with assoeiated shunted hydrocephalus. Any with severe learning difficulties, e. g. with an IQ under 60-65, Received July 14, 1990 Z Kinderchir 45, Suppl. I (1990) 34-36 © Hippokrates Verlag Stuttgart
First we describe some characteristics of the sampie derived from their Pultibec scores. For only 7 % was employment regarded as being very improbable in relation to their estimated physical capacity but, on the other hand, just under a half (430/0) were judged to be fully capable of open competitive work. The remaining half could, with appropriate supportive help, for example, adaptations 10 their work environment or help in getting to their workplace, follow an occupation. About a half were chairbound, but a quarter had unaffected movement and the same proportion needed appliances (Table 1). Nearly a third were wholly continent. Almost a half could manage themselves - either by using an urinary collecting device or by clean intermittent catheterisation. A fifth had greater difficulty in toiletting requiring some or complete help from others (Table 1). More than half of the sampIe were estimated 10 have IQ's greater than 100 and only 5 % less than 74. The relatively good standard of intelligence of the majority was due 10 our sampling procedure and should be associated with a more favourable outcome in relation to occupation. Table 1
Extent of disability.
Locomotion
28%
None/mild impairment Appliances needed Mostly/ enti rely cha irbou nd
47 %
Normal Nocturnal enuresis Continent with aids, self toilet Intermittent incontinence, needs help Total urinary/bowel incontinence
29 % 5% 47 % 10 % 8%
25 %
Continence
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Summary
were excluded from the investigation, for we were mainly interested in looking at the consequences of their physical handicap on how they functioned. As S. Wales is an area with above average unemployment in Britain and below average per capita income then the 68 young adults in our study from this area would be bound to be affected by Ioeal economic circumstances, so we colleeted a further sampie of 30 from the adjoining, more economically favoured, county of Avon.
Factors Affecting Employability Among Young Adults with Spina Bifida and Hydrocephalus Dailyactlvlty.
Open employment Unemployed Sheltered work F. E.jJob creation
33 % 32 % 19 % 15 %
About a quarter overall had impaired hand function, but in only 6 % was this regarded as being severely affected. A previous detailed study in S. Wales by Wallace (11) showed that two-thirds of her sampIe of 225 children had markedly affected upper limbs. Although the parameters of the two assessments were obviously different, the very large difference between the proportions of severely affected persons seems to underline the bias in our sampIe. The category of behaviour on the Pultibec scale refers to characteristics relevant to work. e.g. motivation and drive. Just over 80 % were described as being generally conscientious and persistent within their known capacity, which are qualities obviously appreciated by employers. However, nearly a fifth lacked Hdrive" or 4'initiative". Frank behaviour disorder was virtually absent. The remaining parts of the Pultibec scale, namely vision, hearing and speech showed negligible abnormal function. In relation to their occupational achievement, exactly a third were in open competitive employment, almost exclusively in clerical and administrative occupations (Table 2). Nearly three quarters of these people had been in the same type of job since beginning work. About a third were presently unemployed: a few of these previously had competitive work but no Ionger did so because their job was temporary or because they were sacked when they could not match up to the employers expectations. Nearlya fifth attended Hsheltered" workshops or centres for the handicapped. Although many of these persons described themselves as Hworking", they were actually occupied on often simple, perhaps contrived, tasks for part of their Hworking" day. Their principal reason for attending such a centre seemed to be social as a change from looking at the four walls of their house and perhaps to give their carers some respite. It seemed highly unlikely that any of these persans would be sufficiently trained to enter open employment. About 15 % of the sampIe were receiving either some form of extended education or were employed on government schemes, giving them some experience of work. As their future occupation is uncertain they have been excluded from subsequent analyses. Next we looked at the background factars which might discriminate between those in Hopen" employment and the "unwaged", the latter consisting of the unemployed and those in sheltered employment. The first of the factors not significantly associated with work was Movement. Being in a wheelchair was no baITier to employment, and neither was the need to use appliances, but we thought that individuals unable 10 drive an adapted car or anormal vehicle to a place of work might be at a disadvantage occupationally but, again, this factor was insignificant. Just over half (54 %) of our sampIe could not drive but 13 % drove an unadapted car and a third used a modified vehicle. Their overall Physical capacity largely reflecting physical endurance, was not related to work, perhaps be-
35
cause the majority of those employed \vere in sedentary occupations. For many occupations, especially those suitable for chairbound persons, efficient hand-eye co-ordination seems to be necessary, but neither was Hand nor Arm function significantly associated with employability, but the absence of such a relationship was almost certainly due to sampling bias. Neither Vision, Hearing nor Speech was more severely impaired among the unwaged, as opposed to those who were in work. Although we have shown elsewhere that children attending special schools are at a disadvantage in getting academic qualifications, (9) no significant relationship existed between the Type ofschool attended and employment. However, this relationship, again, is affected by sampling bias - for we excluded all those with at least a moderate mental handicap who would have been educated in special schools and thus the comparison being made was between the more able special school pupil and those in the ordinary schooI, which is likely to produce an appreciable overlap in abilities. Surprisingly, there was a lack of significance between attending Independence training courses and subsequent employment. Several reasons account for this: first, such courses did not exist for the older members of the sampie. Second, same of the younger interviewees observed that the course they attended did not match their particular physical or educational needs and third, the small proportion going into higher education received professional training and this activity replaced an I. T. course. Finally, Gender made no difference to employability. Of the significant factors that discriminated between the subjects in our sampies, the first was Intelligence, (p
Factors Affecting Employability Among Young Adults with Spina Bifida and Hydrocephalus B. Tew 1, K. M. Laurence J, V.]enkins 1 • lUniversity of Wales College of Medicine, Department of Child Health, Heath Park, Cardiff, S. Glam, CF4 4XN, U.K.
A sampie of 98 young adults with spina bifida were interviewed. None had severe learning difficulties. All were resident in S. Wales or the West of England. Only a third were in open competitive employment, mainly of a clerical nature. Their incomes fell weIl below average British earnings. Comparing those in work with the unemployed showed they differed significantly according to intelligence, academic qualifications, continence, behaviour, overall disability score and plaee of residence. The non-discriminating factors are listed and the implications of the findings discussed.
Key words Spina bifida - Hydrocephalus - Employment
Our sampie was drawn mainIy from hospital reeords and quite fortuitously was composed of an equal number of males and females. Unexpectedly, we encountered a large number of refusals (about 75) to paItieipate in our study - many from individuals we knew to be severely physically handicapped and, thus, our sampie may not be representative of the spectrum of disability found among persons with spina bifida, particularly as we excluded also those with severe learning difficulties.
Results Introduction The large number of surviving persons born with spina bifida in Britain in the 1960's as a result of adopting an aggressive policy of surgical care, will have left school and their destinies as adults should be becoming clear. In this paper we report some aspects of a substantial study of young adults surveyed in 1988-1989. We looked at many areas of their lives such as their work, health, sexual and social relationships. This paper focuses only upon employment. Aims, materials and methods Six fieldworkers gathered the data: this involved administering a detailed structured questionnaire, lasting around two hours or more, to the young adult. If the young person was living at horne, their caretakers were separately interviewed. Each parent was asked to complete the GHQ 30 inventory (3), known to be a reliable and valid means of screening for psychiatrie disorder. The fourth area of enquiry was concerned with such maUers as the subject's self-reported anxiety and depression, and attitudes to their handicap. As we did not have the resources to have medical examinations we made do instead with an assessment of physical functioning known as the Pultibec scale (6). This proeedure which evaluates physical, behavioural and sensory funetioning, has been used in several British studies involving handicapped persons (1, 10). Our overall sampie of 98 consisted entirely of persons with a myelomeningoeele, mostly with assoeiated shunted hydrocephalus. Any with severe learning difficulties, e. g. with an IQ under 60-65, Received July 14, 1990 Z Kinderchir 45, Suppl. I (1990) 34-36 © Hippokrates Verlag Stuttgart
First we describe some characteristics of the sampie derived from their Pultibec scores. For only 7 % was employment regarded as being very improbable in relation to their estimated physical capacity but, on the other hand, just under a half (430/0) were judged to be fully capable of open competitive work. The remaining half could, with appropriate supportive help, for example, adaptations 10 their work environment or help in getting to their workplace, follow an occupation. About a half were chairbound, but a quarter had unaffected movement and the same proportion needed appliances (Table 1). Nearly a third were wholly continent. Almost a half could manage themselves - either by using an urinary collecting device or by clean intermittent catheterisation. A fifth had greater difficulty in toiletting requiring some or complete help from others (Table 1). More than half of the sampIe were estimated 10 have IQ's greater than 100 and only 5 % less than 74. The relatively good standard of intelligence of the majority was due 10 our sampling procedure and should be associated with a more favourable outcome in relation to occupation. Table 1
Extent of disability.
Locomotion
28%
None/mild impairment Appliances needed Mostly/ enti rely cha irbou nd
47 %
Normal Nocturnal enuresis Continent with aids, self toilet Intermittent incontinence, needs help Total urinary/bowel incontinence
29 % 5% 47 % 10 % 8%
25 %
Continence
Downloaded by: NYU. Copyrighted material.
Summary
were excluded from the investigation, for we were mainly interested in looking at the consequences of their physical handicap on how they functioned. As S. Wales is an area with above average unemployment in Britain and below average per capita income then the 68 young adults in our study from this area would be bound to be affected by Ioeal economic circumstances, so we colleeted a further sampie of 30 from the adjoining, more economically favoured, county of Avon.
Factors Affecting Employability Among Young Adults with Spina Bifida and Hydrocephalus Dailyactlvlty.
Open employment Unemployed Sheltered work F. E.jJob creation
33 % 32 % 19 % 15 %
About a quarter overall had impaired hand function, but in only 6 % was this regarded as being severely affected. A previous detailed study in S. Wales by Wallace (11) showed that two-thirds of her sampIe of 225 children had markedly affected upper limbs. Although the parameters of the two assessments were obviously different, the very large difference between the proportions of severely affected persons seems to underline the bias in our sampIe. The category of behaviour on the Pultibec scale refers to characteristics relevant to work. e.g. motivation and drive. Just over 80 % were described as being generally conscientious and persistent within their known capacity, which are qualities obviously appreciated by employers. However, nearly a fifth lacked Hdrive" or 4'initiative". Frank behaviour disorder was virtually absent. The remaining parts of the Pultibec scale, namely vision, hearing and speech showed negligible abnormal function. In relation to their occupational achievement, exactly a third were in open competitive employment, almost exclusively in clerical and administrative occupations (Table 2). Nearly three quarters of these people had been in the same type of job since beginning work. About a third were presently unemployed: a few of these previously had competitive work but no Ionger did so because their job was temporary or because they were sacked when they could not match up to the employers expectations. Nearlya fifth attended Hsheltered" workshops or centres for the handicapped. Although many of these persons described themselves as Hworking", they were actually occupied on often simple, perhaps contrived, tasks for part of their Hworking" day. Their principal reason for attending such a centre seemed to be social as a change from looking at the four walls of their house and perhaps to give their carers some respite. It seemed highly unlikely that any of these persans would be sufficiently trained to enter open employment. About 15 % of the sampIe were receiving either some form of extended education or were employed on government schemes, giving them some experience of work. As their future occupation is uncertain they have been excluded from subsequent analyses. Next we looked at the background factars which might discriminate between those in Hopen" employment and the "unwaged", the latter consisting of the unemployed and those in sheltered employment. The first of the factors not significantly associated with work was Movement. Being in a wheelchair was no baITier to employment, and neither was the need to use appliances, but we thought that individuals unable 10 drive an adapted car or anormal vehicle to a place of work might be at a disadvantage occupationally but, again, this factor was insignificant. Just over half (54 %) of our sampIe could not drive but 13 % drove an unadapted car and a third used a modified vehicle. Their overall Physical capacity largely reflecting physical endurance, was not related to work, perhaps be-
35
cause the majority of those employed \vere in sedentary occupations. For many occupations, especially those suitable for chairbound persons, efficient hand-eye co-ordination seems to be necessary, but neither was Hand nor Arm function significantly associated with employability, but the absence of such a relationship was almost certainly due to sampling bias. Neither Vision, Hearing nor Speech was more severely impaired among the unwaged, as opposed to those who were in work. Although we have shown elsewhere that children attending special schools are at a disadvantage in getting academic qualifications, (9) no significant relationship existed between the Type ofschool attended and employment. However, this relationship, again, is affected by sampling bias - for we excluded all those with at least a moderate mental handicap who would have been educated in special schools and thus the comparison being made was between the more able special school pupil and those in the ordinary schooI, which is likely to produce an appreciable overlap in abilities. Surprisingly, there was a lack of significance between attending Independence training courses and subsequent employment. Several reasons account for this: first, such courses did not exist for the older members of the sampie. Second, same of the younger interviewees observed that the course they attended did not match their particular physical or educational needs and third, the small proportion going into higher education received professional training and this activity replaced an I. T. course. Finally, Gender made no difference to employability. Of the significant factors that discriminated between the subjects in our sampies, the first was Intelligence, (p
