COPING WITH DISABILITIES - THE PERSPECTIVE OF YOUNG-ADULTS FROM DIFFERENT ETHNIC BACKGROUNDS IN INNER LONDON

In April 1993, national reforms of the method of offering community he alth and social care have come into effect in the U.K. A cornerstone o f the reforms will be the appointment of care managers by local author ities to oversee needs assessment and care of vulnerable people. A sur vey was undertaken of 65 young people with physical disabilities livin g in inner south east London, an area of deprivation and ethnic divers ity. The aim was to ascertain the perceptions of young adults in terms of access to services, lifestyle and future plans. The information wa s intended to inform joint work by the local health and social service s departments in their own needs assessment in implementing the Commun ity Care Act. The majority of those interviewed were living with infor mal carers, usually their mother. Most people had complex disabilities and were wheelchair users, but it did not follow that those with grea ter need were being supported more by either statutory or voluntary se ctors. In fact, people were losing what contact they once had, particu larly with social services. Access to respite and organised social out lets was strictly limited, particularly for people with complex disabi lities. Although over half the interviewees had taken formal examinati ons, only five were currently employed. and several had lost their job recently. Few had received advice about careers or independent living and almost half of those interviewed did not know where to go for fam ily planning advice. Over 40% of interviewees were from ethnic minorit ies, and lived in close family networks where coping skills were simil ar to that of the white British group. However people from ethnic mino rities were less optimistic about their future prospects, because they perceived that poverty, disability and ethnic background would serve to isolate them from the wider community. According to community care principles, needs assessment and care management, being person and not service oriented, offer the promise of breaking through the complex w eb of personal and societal factors encountered among interviewees. Ho wever due to poor inter-agency communication, resource restrictions an d continued traditional patterns of working in our area the community care reforms may not succeed, particularly for young people with physi cal disabilities- A flexible team approach is required across the vari ous agencies. This should include the development of shared budgets an d more imaginative involvement of the wide range of providers who are working locally. A database of service users which aims to facilitate care management should also be considered and can be used to coordinat e activities. Certain national schemes with central funding for people with disabilities (such as the Independent Living Fund) are justifiab le because delegating all responsibility for care provision to lower l evels in the system has consistently resulted in competing local prior ities serving to marginalise disabled people.