Academic journal article Social Work

A Critical Analysis of the Emerging Crisis in Long-Term Care for People with Developmental Disabilities

Academic journal article Social Work

A Critical Analysis of the Emerging Crisis in Long-Term Care for People with Developmental Disabilities

Article excerpt

Profound changes in attitudes toward people with developmental disabilities have occurred during the past four decades in the United States. The once widely held view that these individuals were a burden and needed to be segregated and medically treated has been largely replaced by an affirmation of the civil rights of people with disabilities and their entitlement to humane treatment. A philosophical orientation of normalization has gradually replaced segregationist conceptions of the role of people with developmental disabilities in contemporary society.

Simultaneously, the system of delivering services, including long-term care, to people with developmental disabilities has experienced a similar evolution. Public institutions--the mainstay of state service systems since the 19th century--have been supplanted by a network of community-based residential programs and supports (Prouty, Smith, & Lakin, 2003). In the late 1960s, states began moving residents out of state-operated institutions and into nursing homes and increasingly, community group homes. Media exposes uncovered notoriously inadequate and inhumane conditions in institutions, and in response, federal class action litigation was initiated by coalitions of families and The Arc (formerly the Association for Retarded Citizens) (Hayden, 1997). These lawsuits catalyzed the development of community-based long-term care options such as group homes that today are the most prevalent form of care (Braddock, 2002). States began expanding the smaller-scale services they funded as support for this care model increased.

A more recent trend, and best practice in this area, is providing small-scale, individualized supports tailored to meet the unique and dynamic needs of service recipients (Bradley, 2000). In many areas, long-standing "placement" practices in which individuals are "slotted" into existing homes or facilities without regard for their preferences have been eliminated (Taylor, Bogdan, & Racino, 1991). The continuing trend toward smaller, individualized long-term care for people with developmental disabilities is now a fundamental aspect of the service system (Prouty et al., 2003).

The service system's most significant defining feature, unfortunately, is its limited scope. The need for care and related support systems far exceeds available services. In 2000, more than 430,000 individuals with developmental disabilities were living in some type of out-of-home setting. Thirty-six states, however, were simultaneously maintaining waiting lists for nearly 60,000 people in need of long-term care (Prouty et al., 2003). Furthermore, official accounts likely underrepresent the true extent of unmet need because many families do not seek services until a caregiver dies or becomes incapacitated. In addition, some states reject the collection of waiting list records altogether.

Without immediate and deliberate change--including a structural response from the social work community--thousands of people with developmental disabilities will have unmet critical service needs. Families will bear an even greater burden not just from daily care, but also from exacerbated financial and emotional stress. Numerous factors contribute to the imminent crisis. Clearly, states must address the overabundance of people who wait months and years for long-term care services. At present, family support services are simply inadequate. People with developmental disabilities are enjoying increased longevity, but this means their needs are in direct competition with those of the elderly population, which is also living longer and growing in number. The landmark Supreme Court decision--Olmstead v. L.C. and E.W. (1999) and waiting-list litigation may reshape the landscape of services provided to people with developmental disabilities, but their sluggish pace offers little to those in immediate need.


Developmental disabilities are chronic impairments that appear before age 22 and are likely to continue indefinitely. …

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