GUEST EDITORIAL

INDEPENDENT LIVING - A BETTER LIFE FOR THE DISABLED

IN recent years, concomitant with the movement to deinstitutionalize mildly and moderately developmentally disabled people in the United States, as in other countries, there has been a rapid growth in the independent living movement. It became obvious early in the deinstitutionalization process that community resources in most areas of the country were inadequate to serve the needs of these individuals.' These needs included not only housing but also medical care, recreation, socialization and daily activity programs, including sheltered employment. Community-based voluntary agencies sensitive to community needs-such as the National Easter Seal Society, the national and local Associations for Retarded Citizens and United Cerebral Palsy-were involved early in the development of needed programs. These organizations and others very wisely involved disabled individuals and their families in the development and governance of these programs.

In most areas of the U.S., disabled clients and other disabled people have assumed the major responsibility for the conduct of the programs. They feel that disabled people should control programs which are designed primarily to serve their needs, rather than leave program development and management in the hands of non-disabled people. The Rehabilitation Services Administration of the U.S. Department of Education, through grants to state Divisions of Vocational Rehabilitation, are providing funds to support the development of independent living programs, as well as long-term financial aid to maintain the activities. Community voluntary agencies continue to be involved in providing direct financial aid or matching funds from federal and state grants.

These programs have been conclusively demonstrated to be cost-effective for the developmentally disabled when compared to per diem costs in residential institutions. Costs in group homes for the developmentally disabled are considerably less than for the institutions, even when costs for a daily activities or workshop program are included. Obviously the psychological benefit to disabled persons and their families is immeasurable in comparing insti- tutionalization with community-based independent living.

Health-care providers concerned with the care of disabled individuals must recognize their responsibility to assist in the growth and expansion of community- based independent living programs and related services. The rapid advancements

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in health care in the past fifty years are making it possible for disabled people often to live as long as their non-disabled fellow citizens. Society must accept the responsibility to provide adequate medical, housing, social and recreational programs for those who are unable to provide for themselves because of disability. Health-care professionals should be prepared to take the lead in fostering the establishment of these necessary services. As physicians and health- care workers, we must recognize our obligation to assure our disabled clients more than quality health care. We must work to mobilize community and government resources in order to provide our patients a comfortable, enjoyable and even a productive life.

An important and very necessary step in the move from the institution or the inpatient rehabilitation unit is the transitional living center. These centers are needed in communities, in addition to independent living centers, in order to assist disabled individuals to develop the skills needed for independent living. According to Hart2, only 6 per cent of patients admitted to one transitional center were self-dependent (directing their own lives and being responsible for maintaining a household). A follow-up study one year after discharge from the transitional center showed that 74 per cent were living in self-dependent situations. These centers, therefore, help to assure the continuity of successful independent living.

Bartels3 describes the independent living movement as ‘an integration of the expectations of individuals with disabilities about life, the philosophy supporting those expectations, the organizational expression of these ideals, the development of service options to meet real needs and the environmental image necessary for individuals with disabilities to truly contribute in contemporary America’. The support and assistance of all of us in the professional world are needed by those we serve in order for them to share in the rights and privileges enjoyed by all citizens.

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ROBERT P. CHRISTOPHER, M.D. President,

American Academy for Cerebral Palsy and Developmental Medicine

References 1 . Knishkowy, B. N. (1986) ‘Independent living: caring for the adult with cerebral palsy.’ Journal of Family

2. Hart, J . L. (1983) ‘Transitional rehabilitation: another step toward community living.’ Rehabilitation

3. Bartels, E. C. (1985) ‘A contemporary framework for independent living rehabilitation.’ Rehabilitation

Practice, 23, 2 1-27.

Literature, 44, 149-152.

Literature, 46, 325-321.

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