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July 2002 - Ref 732 Becoming adult: young disabled people speak This study of 72 young adults who have grown up with disability compares the experiences of a group who achieved independent households and jobs with groups of people who achieved one of these or neither. The study aimed to draw out the factors that enable and support disabled young people to move to independent adulthood. The study found that:
Background This study interviewed groups of young disabled people who had achieved varying levels of independence: those with jobs and independent households (described as 'most independent') and those with one of these or neither ('less independent' and 'least independent' respectively). The study examines what difficulties they faced in transition to adulthood and what helped them achieve this. What constitutes 'adulthood'? Respondents described their aspirations for adulthood in terms of paid work, independent householding, social relationships and citizenship.
However, the aspirations of the least independent could be much more limited:
Forms of support available Young disabled people require a broad range of support to meet needs with personal care, nursing, housing, income and jobs if they are to live independently as adults. The most independent respondents most often saw support from parents as key to this. They valued parents who offered stringent nurture, with high expectations of their educational achievements, of their ability to care and fight for themselves and who assumed that they would grow up - like other adults - to live independently:
These parents also tended to have the material and cultural resources to support their children with loans and with networks and in contests with local authorities over education. However, not all respondents were able to draw on such family resources. The least independent respondents could feel trapped in the parental home: it could be very difficult to grow away from the very close relationships that had developed:
Lack of support beyond the family also presented some respondents with an impossible barrier to independent adulthood. Education Educational achievements among the most independent respondents were high. The majority of respondents in all groups had been to segregated schools, 44 compared with 28 to mainstream. Some respondents were strong advocates for their specialist segregated schools, which they felt brought favourable resources, specialised skills, an accessible curriculum and peer group support. However, accounts of segregated schools were very divided; respondents from other groups often felt schools had limited their expectations and achievements. Access to appropriate support in mainstream education also varied widely. Housing Half the most independent group of respondents were owner-occupiers with some choice and control over their housing. But this status was hard won, in the context of the higher costs and rarity of accessible housing and low pay. The lack of suitable housing could hinder job mobility. Kate had moved to a new job, but was paying personal assistants to take her wheelchair in and out:
The housing needs of respondents living independently - especially those without jobs - were mainly met by housing associations. Housing association accommodation often brought accessibility, good service, support for needs, and sometimes co-ordinated personal assistance. But some respondents felt segregated. This could also create a benefit trap that made employment near impossible: few respondents earned enough to pay the rents and have money for the rest of life. A few respondents had been able to use housing associations as a route to greater independence through schemes of joint ownership or other assistance with owner-occupation such as mortgage deposits. Personal assistance For respondents living independently the means-tests and charges around funding for personal assistance were a major barrier to work. They had no reasonable expectation of support from employers and no expectation of earning enough to pay for personal assistance. Siresh had low expectations of employment because of his poor educational qualifications and personal assistance needs:
Respondents living with parents usually had their needs met by their parents. Some parents provided skilled and sensitive nursing care which respondents valued above any alternative form of provision. But others described their relationships as damaging to their parents or abusive to themselves, making it harder for them to live as independent adults.
Employment Government policy is to encourage those who can to work, focusing on addressing the attitudes and limitations of potential employees. But very few respondents had jobs that paid enough to cover disability costs. A few respondents had accessed low paid work through public sector schemes, and some graduates valued voluntary sector training schemes. A few had used the employment services to access essential assistance or equipment. But most spoke of delays and obstacles in getting these - especially if they worked in the private sector.
Most respondents worked for personal satisfaction rather than for the money, though a few felt that they were paid more - and could therefore lead a fuller life - than they thought likely on benefits. There were no obvious differences in attitudes between those who were in employment and those who were not. There were three key deterrents to employment: lack of educational qualifications, failed applications and - looming largest - benefit problems, especially in relation to personal assistance. Benefits Benefits - whether for increased costs, income replacement, or personal assistance - formed a significant proportion of respondents' incomes. They were therefore a key influence on respondents' ability to get work, housing and personal assistance.
Respondents felt the benefit system was often at the heart of their difficulties in combining different aspects of adult status. It was particularly difficult to be a householder and to have a job, especially for those needing personal assistance.
Conclusion Most people in the study wanted to achieve adulthood through employment, to gain resources for independent living in their own choice of housing, wider social networks, escape from poverty, and a sense of contributing to society. However, their experience suggests that young people growing up with disability need more support in moving from parental care in parental homes to independent adulthood. Benefit policy has just begun to recognise the disadvantages faced by young people growing up with disability. Income support, housing benefit and means-tested housing adaptations, personal assistance charges combine to form a means-tested environment which inhibits the movement from parental care to personal autonomy, through specialised housing into owner-occupation and from unemployment into work. The researchers conclude that the difficulties of transition to adult life - and the differences from people with disability acquired later in life - need much wider recognition throughout the policy environment. About the project The study was undertaken by Nicola Hendey and Gillian Pascall at the School of Sociology and Social Policy at the University of Nottingham. The study is based on in-depth semi-structured interviews with 29 respondents with jobs and independent households (the 'most independent' group) and 43 others in comparative groups who had one or other of these or neither ('less' and 'least independent' groups). Most respondents were entitled to Disability Living Allowance at the middle or higher rates and this was used as a criterion for selecting a sample with high assistance needs. To allow for the extended transition to adulthood of this group, the age of the sample ranged from 21 to 35. How to get further
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