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With An Eye to the Future

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2012: Deinstitutionalization is Unfinished Business

The National Council on Disability writes in "Deinstitutionalization: Unfinished Business" that closing institutions is not about "dumping" people into the community, nor is it about closing large institutions and moving people to smaller institutions or institution-like settings. Closing institutions is about developing strong and inclusive community supports and allowing people to have control over how they live their lives.

Under the Americans with Disabilities Act (ADA, 1990), the Supreme Court's decision in Olmstead v. L.C. (1999), the New Freedom Initiative (NFI, 2001), the Developmental Disabilities Assistance and Bill of Rights Act (2000), and the Rehabilitation Act of 1973, community living should be the rule, rather than the exception.

Clearly, deinstitutionalization and the development of a strong community-based system that helps people with ID/DD live in the community is the morally, ethically, and legally "right thing to do," so why is it taking so long?

This view of a building at the old Cambridge institution reminds us of how far we have come with de-institutionalization, and of how far we have left to go.

According to this report, many issues still need to be addressed and actions taken to ensure that the system can meet the needs of the person who is transitioning from an institution to the community.

These issues include the following:

  • Address the shortage of direct-support workers available to the community-based support system. Because of the sub-par pay rate, the turnover rate of these valuable workers averages 50% a year, and the vacancy rate, 10-11%. In order to recruit and retain a reliable direct-care workforce, the pay rate must be increased.
  • Allow state agencies to provide personal budget allocation choices to individuals with disabilities, so that each person may apply for the services he or she most needs within the bounds of an approved service plan. As it typically stands now, most people with developmental disabilities obtain community-based residential and day services from a provider agency that manages the facilities, personnel, and logistics of support and fits the clients into predetermined service plans. In order to balance cost-effectiveness with quality of life, autonomy in financial choice must be provided to people with developmental disabilities.
  • Focus on housing, and develop creative strategies to identify, maintain, and retain housing designed to accommodate the needs of people with developmental disabilities. Most systems rely on the use of publicly subsidized housing, in combination with individual Supplemental Security Income and Social Security Disability Insurance (SSI and SSDI) payments, because Medicaid does not cover housing costs in the community. One's housing options should not determine what services one gets.
  • Develop community-based crisis intervention strategies. Many states have teams of professionals in Mobile Crisis Units (MCUs) that respond to a person's home when a person with a developmental disability, and perhaps a dual diagnosis of mental illness, experiences a crisis that threatens his or her ability to live successfully in the community. The team can provide a range of services, including assessment, crisis intervention, supportive counseling, information and referrals, links to appropriate community-based services for ongoing treatment, and follow-up. Research statistics from Georgia and Oregon show that MCUs have been able to resolve the crisis at the person's home in three out of four cases, either immediately or through intensive in-home supports.
  • Conduct research that focuses on measuring quality of life characteristics to determine the success of deinstitutionalization and improve the delivery of services and supports in community-based models. Quality of life has many elements, such as personal health and well-being, a sense of home, a network of friends, the availability of choices, self-respect, and personal fulfillment. Studies find that living in the community yields positive results for everyone, from cost-savings to self-determination.

Overall, it is important to understand the impact of individual and community attitudes, and develop strategies to address these when necessary. Affording people with developmental disabilities the same rights and opportunities as other citizens is often hindered by low expectations and the belief that "separate but equal" is justified in this situation.

It is not.

National Council on Disability
1331 F Street, NW, Suite 850
Washington, DC 20004