Emerging issues in mental retardation: self-determination versus self-interest.

Abstract

This issue of Health & Social Work launches a series of Forums on the social care of people with special needs-people with cognitive disabilities, brain injury, mental illness, addictions, and organic disorders. Because these individuals can be disabled substantially and their judgment may be impaired, they require continuous looking after by society, but specifically by competent, responsible people. Our May issue set the stage for discussion of social care with articles on a wide range of contemporary social work activities involving care and its meanings in the capitalistic United States. It also published a Call for Papers on Mental Health; this issue includes a related Call for Papers on Substance Abuse. The Forum in this issue addresses social care for people with mental retardation and other developmental disabilities. Articles from within and outside our profession discuss the values underlying social work's role as society's agent on behalf of this population and their families. An array of perspectives are presented on the changing philosophies underpinning current services in social work practice. THE PREVALENCE OF MENTAL RETARDATION It is estimated that up to 3 percent of people may have some mental retardation, but only half of these are actually diagnosed, and the etiology is unknown in 80 percent of cases. Seventy-five percent of people with mental retardation have a mild form (with IQs of 52 to 68), and only 5 percent have a severe or profound form (with IQs below about 40) (Ginsberg, 1995,); the latter group is most likely to be receiving state services. An important subset of this group are dually diagnosed who have comorbidities including mental health problems, associated developmental disabilities, and complex medical conditions. People with mental retardation or developmental disabilities are defined by legislation to include those with disabling conditions acquired before age 22 that cause lifelong and substantial impairment. Of the population ages 18 to 64, it is estimated that between 0.8 percent and 2.9 percent have mental retardation, or 1.3 to 4.8 million adults (excluding children, people living in institutions, and those who developed disabilities as adults) (Wiener, Clauser, & Kennell, 1995). Care for people with mental retardation or developmental disabilities living at home is provided largely by family members--especially women (mothers and sisters) but by also fathers, brothers, and other relatives. Although care often involves physical and emotional work, especially for people with the most severe disabilities, social support and government financial help have proven very instrumental in sustaining family care (Hooyman & Gonyea, 1996). CHANGES IN PUBLIC SERVICES The larger society has political and economic obligations to care as well, especially for people with mental retardation who have no relatives or whose relatives require support to be able to provide care. Society (the state) provides and subsidizes care through traditional institutions: state schools, special homes, and nursing homes and more recently community-based schools and educational programs, intermediate care facilities for the mentally retarded (ICFMRs), half way houses, group homes, community-based residential care facilities, adult foster care, and board and care. Indeed, social care for Americans with mental retardation today probably encompasses a major share of the correctional system, the shelter system for homeless people (Kane, Kane & Ladd, 1999), public assistance, employment and training, public education, and even disaster relief. This social care system is extensive, multifaceted, and, for people with the most severe impairments, very expensive. As all three articles in our Forum point out, the past 30 years have seen radical changes in the way the United States provides institutional care for people with moderate and severe mental retardation. …