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Leading Disability Organizations Call on Gov. Blagojevich to Stop Segregating People with Disabilities
Five Years After Landmark Supreme Court Ruling, Illinois Trails Nation in Compliance
Special Report: A Nationwide Study of Deinstitutionalization & Community Integration
Access Living Report: "...shunted aside, hidden and ignored..."
CHICAGO (June 22, 2004) - Citing evidence that Illinois trails the nation in guaranteeing the rights of its citizens with disabilities, the state's leading disability organizations issued two reports today calling on Gov. Rod Blagojevich to take decisive action to comply with the Supreme Court's five-year-old ruling in Olmstead v. L.C., which directs states to move their disabled populations from institutional to community-based settings.
In Olmstead, handed down five years ago on June 22, 1999, the Supreme Court ruled that, under the Americans with Disabilities Act, the unnecessary segregation of people with disabilities in institutions is discriminatory. Further, states must develop a comprehensive and effective plan for identifying and placing individuals with disabilities in community settings.
"The unnecessary institutionalization of people with disabilities is discrimination," said Marca Bristo, president and CEO of Access Living, which authored " '...shunted aside, hidden and ignored:' A Blueprint to Implement Olmstead v. L.C. and End the Unnecessary Institutionalization of People with Disabilities in Illinois," a report jointly released by thirteen statewide disability organizations. "People with disabilities who live in integrated settings have been shown to lead more productive, independent and satisfying lives. Yet, five years after the Olmstead decision, Illinois stubbornly continues to institutionalize its citizens with physical, developmental and psychiatric disabilities at one of the highest rates in the nation."
The organizations documented Illinois' poor record and laid out achievable and affordable ways for the State to comply, and showed how other states have successfully overcome barriers similar to those in Illinois to integrate their citizens with disabilities.
"Our study shows that whether a state affords its people with disabilities the same rights as other members of society comes down to political will," said Zena Naiditch, president and CEO of Equip for Equality, which today released a report titled, "Segregation or Community Integration: Ensuring the Civil Rights of People with Developmental Disabilities in Illinois." Equip for Equality is the federally mandated Protection and Advocacy System for people with disabilities in Illinois.
Naiditch said, "From the day he took office, disability organizations have brought this crucial issue to the governor, to no avail. Today we unveil a roadmap for meaningful and achievable community integration as required under Olmstead."
At a time when community living has been demonstrated nationally to lead to more independent and productive lives for persons with disabilities, Illinois is 42nd in fiscal effort for community spending for people with developmental disabilities, but eighth in fiscal effort for institutional spending, showing Illinois' misplaced priorities, according to the report by Equip for Equality. The "Shunted aside, hidden and ignored" study found that, for example, Illinois spends less than one-seventh the amount per capita that New York spends on community-based living for people with developmental disabilities.
Changing successfully to a community-based model does not have to be more expensive, the groups said.
The Equip for Equality report also found that states that have successfully achieved de-institutionalization and community integration were able to overcome special-interest pressures from local politicians, as well as unions and businesses who benefit from the continued institutionalization of people with disabilities. In addition, successful states were able to educate parents about the benefits of community living for their institutionalized family members - those families whose loved ones have made the transition to community-based living report that their family members are happier and more successful. Finally, in many states, litigation was a significant catalyst for change.
"The issue of obstacles and costs is a smokescreen," said Ann Ford, executive director of the Illinois Network of Centers for Independent Living, speaking on behalf of the organizations that released the "Shunted aside, hidden and ignored" report. "Clearly, where there is a will, there's a way. Illinois can achieve better living conditions and enable people to contribute to society without spending more state funds than it would on institutional living. But the first step is for Gov. Blagojevich to seize the opportunity to bring about real reform by putting the interest of people with disabilities first."
With proper planning and more consistent capturing of available Medicaid funds, Illinois could bring about dramatically improved results over a very short time period, the groups said. The organizations outlined the following key steps:
Establish a waiting list, using professionally appropriate assessments, to identify individuals capable of handling and benefiting from community life.
- Complete within one year
Move people from institutions to community who are identified as appropriate for community life and who do not oppose transfer
- Within five years, move one-half of institutional residents on waiting list
- Every two years thereafter, move one-quarter of the remaining people on waiting list
- Strengthen pre-screening systems to avoid future unnecessary institutional placements
Paying for community services
- Maximize and increase Medicaid funding for community services
- Divert funding from institutions to the community as people transfer so that money follows the person
- Dedicate and restrict cost savings to community services
"This clear and simple approach has been proven to work elsewhere in the country," said Bristo. "But it requires a shift in our thinking, political courage. It also requires scrapping Illinois' so-called plan, which fails to establish clear goals and measurable outcomes, and to re-allocate resources in a way that makes change possible."
The advocacy groups cite fundamental flaws in the state's current Community Services and Disability Plan, drafted in 2002 as a response to Olmstead. Specifically, it does not establish a procedure for ending the exclusion of people with disabilities from their communities; lacks assessment of individual capabilities to live in a community setting; has no benchmarks for moving people in to the community; and designates no method for paying for community services.
"We believe that everyone should be able to live in the community and get the supports that they need, no matter what kind of disability they have," said Tia Nelis, President of People First of Illinois.
"The State has not committed to preventing the unnecessary institutionalization of people with disabilities," said Bristo. "To the contrary, Gov. Blagojevich keeps pulling us in the wrong direction by pushing for more institutionalization. The current compliance plan only allows the State to stall without taking real action."
In all states that have successfully achieved a strong community system, gubernatorial leadership has been a key and necessary ingredient, the groups said.
"The Governor can either embrace change and enable people with disabilities to live in their communities with supports, or face the alternative of judicial enforcement of the civil rights of people with disabilities," said Naiditch. "I hope he takes this opportunity to bring Illinois into compliance with the ADA's 'community integration' mandate."
The reports released by the organizations can be found online at www.accessliving.org and www.equipforequality.org.
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Established in 1980, Access Living is a non-residential Center for Independent Living for people with all types of disabilities. The organization provides services that promote the independence and the inclusion of people with disabilities in every aspect of community life. Access Living follows the independent living philosophy that calls for community-based, consumer-controlled service and advocacy programs that emphasize a cross-disability and self-help approach.
Equip for Equality is a private, nonprofit organization that operates the federally mandated Protection & Advocacy System for Illinois, which safeguards the rights of children and adults with physical and mental disabilities (including developmental disabilities and mental illnesses).
The Illinois Network of Centers for Independent Living (INCIL) is a statewide organization made up of 24 Centers for Independent Living (CILs) in Illinois. INCIL coordinates the activities and efforts of all CILs, resulting in a stronger, more unified voice to promote the needs and priorities of the CILs and the people they serve.
People First of Illinois is committed to empowering people with disabilities to make their own decisions and choices and to speak for themselves. The organization advocates to improve the lives of people with disabilities in Illinois, and works to ensure that persons with disabilities are treated equally and are active members of their community.
