EFE Releases Report on State Institutionalization

[Download the report from the Community Integration Report Page]

Illinois is bucking the national trend to downsize and close state-operated institutions for people with developmental disabilities, one of the significant facts that came to light from Equip for Equality's 50-state study of deinstitutionalization and community integration of people with developmental disabilities The study, funded by the Illinois Council on Developmental Disabilities (ICDD) and referred to as the Community Integration Policy Project, investigated how states were providing services to people with developmental disabilities and how states that successfully increased community integration addressed opposition to deinstitutionalization. After reviewing and evaluating the vast information from the 50 states, the goal of the project was to make specific recommendations to ICDD to implement a process so that, "by September 2006, five hundred (500) people will have personal supports as needed and chosen by them to live in the community."

During the year-long project, Equip for Equality's Public Policy staff interviewed at least two staff members from advocacy organizations or state agencies in each state. Project members visited three states whose demographics are similar to Illinois' and whose community integration programs and services are effective and appropriate to the needs of the people with developmental disabilities. In addition, Laura Miller, Managing Attorney, surveyed legal cases nationwide and conducted in-depth legal case studies of three states, analyzing the litigation strategies used and the roles that litigation served in shaping systematic changes for community integration.

Policy Analyst E.G. Enbar notes, "It was an exhausting, yet exhilarating experience to learn about innovations in other states. Illinois has a lot of catching up to do."

A state overview reveals that more than 3,000 people reside in state-operated institutions in Illinois and that the state is:

5th in total personal income (Bureau of Economic Analysis 2001)
40th in the nation in total spending on developmental disabilities
47th in the percentage of people residing in publicly funded residences of 1-6 people
47th in the percentage of MR/DD spending allocated for community services
42nd in fiscal effort for community spending; 8th in fiscal effort for institutional

Equip for Equality's study found a strong and consistent national movement toward downsizing or closing institutions and increasing community integration and found several common characteristics among states that succeed in community integration:

Litigation has been a catalyst for shifting resources from institutions to community-based services and supports;
Leadership by the governor and other key executive and legislative leaders has been critical;
Securing some level of "buy-in" from key stakeholders, including unions, parents of institutionalized individuals, local politicians and others has been critical;
Expansive use of federal home and community-based services (Medicaid) waiver programs were a strong component; and
Strong quality assurance programs to ensure individualized, quality services and safety were essential to success.

Senior Policy Analyst Morrie Fred comments, "What we learned from these states is that it is possible to address the concerns of these groups without reneging on the state's responsibilities to people with disabilities and their right to live in the least restrictive setting."

Innovation and commitment to change was significant in states where the Governor, legislators, and state agencies took strong leadership roles. For this reason, Equip for Equality is recommending that the Governor take immediate action to bring Illinois into compliance with the ADA's "community integration mandate," as set forth in the U.S. Supreme Court's decision in L.C. v. Olmstead.

Among the key recommendations are that an Executive Order be issued by the Governor to reflect this Administration's commitment to community integration of people with disabilities. The Order should:

Recognize that community living is a civil right of people with disabilities.
Pledge this Administration's commitment to build a strong system of in-home and community-based services and supports;
Call on the General Assembly to work in partnership with the Governor to pass a package of reform legislation over the next two years for developing a strong, coordinated community service system;
Seek significant expansion of Medicaid funding for home and community-based services and require the Departments of Public Aid, Public Health, and Human Services each to submit an annual progress report of these Medicaid-funded services;
Create an effective monitoring system that addresses the reasonable concerns of parents about the well-being and safety of their family members.

The full report is available in the Publications section of Equip for Equality's website

(Data from Rizzolo, Mary, et al. The State of the State in Developmental Disabilities. Washington, D.C.: American Association on Mental Retardation, 2004)

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