LONG-TERM CARE FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES: A Critical Analysis
Palley, Howard A., Hollen, Valerie Van, Health and Social Work
This article explores how the trends toward long-term community care affecting people with developmental disabilities developed. Appropriateness of care and quality of life issues are discussed. The article also reviews the development of long-term care for frail and disabled elderly people and explores the arguments for a continuum of care that have developed in this area. The authors conclude that future policies with respect to meeting long-term care needs for people with developmental disabilities must be addressed flexibly on an individual basis, related to individual needs, and must provide a continuum of care services.
Long-term care for people with developmental disabilities requires social policies that provide for a diverse population. The 1994 Developmental Disabilities Asistance Act and Bill of Rights Act Amendments (P.L. 103-230) defines a developmental disability as a chronic, severe disability of an individual five years of age or older that
(a) is attributable to a mental or physical impairment or combination mental or physical impairments;
(b) is manifested before the individual attains the age of 22;
(c) is likely to continue indefinitely;
(d) results in substantial functional limitations in three or more of the following areas of major life activity--(i) self-care; (ii) receptive and expressive language; (iii)learning; (iv) mobility; (v) self-direction; (vi) capacity for independent living; (vii) economic self-sufficiency;
(e) and reflects the individual's need for a combination and sequence of special, interdisciplinary or generic services, supports or other assistance that is of a lifelong or extended duration and is individually planned and coordinated. (U.S. Congress, 1995, p. 289)
This definition acknowledges the individual's need for care over the course of a lifetime and also recognizes that the level of care needed changes over time. To provide this care, policies must allow for a range of services, delivered in a variety of ways, to suit individual needs. Historically, this has not been the case.
TRENDS IN CARE FOR INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES
Before the 1800s, care of individuals with developmental disabilities, if it existed at all, was provided in institutions (Winzer, 1993). During the 19th century, the influence of the French enlightenment and the institutional reform movement in the United States resulted in an increased number of care facilities. (Throughout the article, the term institutional is used to denote an organization having a specific purpose with a complex set of rules and a substantial degree of social control.) At the same time, philosophical differences were debated regarding the causality of mental retardation and other deviancy. These differences centered on whether such causality was mainly due to heredity or environment. In the latter part of the 19th century, Social Darwinism and the Eugenics Movement emerged. These movements advocated the improvement of society by eliminating deviant or "weaker" members--through neglect or by sterilization of people with mental retardation and mental illnesses (Winzer, 1993).
Nevertheless, by 1865 there were eight schools for mentally retarded children in the United States, and by 1876, 34 states had institutions that accommodated 25,000 children with mental retardation (Winzer, 1993). These institutions had a dual purpose: (1) to protect the retarded and (2) to control them to "protect society." As industrialization, urbanization, and immigration led to new social services needs, by the end of the century the education of individuals with mental retardation had taken a back seat to minimal custodial care.
By the mid-20th century, the principle of normalization and the concept of providing care in the least restrictive environment was beginning to be discussed in professional circles and to appear in the social policy agenda (Wolfensberger, 1970). …