EFE's Community Integration Initiative

Advocacy to Make the ADA's Promise a Reality

Historically, people with disabilities in Illinois and across the country have been isolated and segregated in institutions. When Congress passed the Americans with Disabilities Act (ADA) in 1990, it found that the isolation and segregation of people with disabilities is a serious and pervasive form of discrimination. Congress also found that institutional confinement severely diminishes individuals' everyday life activities, including family relations, social contacts, work, educational advancement and cultural enrichment.

Following the passage of the ADA, the U.S. Department of Justice issued regulations requiring state and local governments to administer their programs in the most integrated setting appropriate to the needs of people with disabilities. Over the years, many states have recognized that it is better to serve people with disabilities in smaller community-based settings, and these states have committed more resources to integrated environments.

Supreme Court: Unjustified Institutionalization Violates ADA

In 1999, the United States Supreme Court decided a precedentsetting community integration lawsuit called Olmstead v. L.C. In that case, the Supreme Court found that the unwarranted institutionalization of people with disabilities is a form of discrimination that is actionable under the ADA. The Court explained that segregation perpetuates unjustified assumptions that institutionalized people are incapable or unworthy of participating in community life.

In the wake of the Supreme Court's decision in Olmstead, Equip for Equality and other advocates made numerous efforts to work cooperatively with the State to address the institutionalization of people with disabilities in Illinois. In 2005, six years after the Olmstead decision and 15 years after the passage of the ADA, the State had not shown a true commitment to alter its practices of institutionalizing an overwhelming percentage of the people with disabilities in Illinois.

EFE Initiates a Community Integration Advocacy Plan

After determining that the State was not going to voluntarily comply with the ADA, EFE initiated a comprehensive community integration plan. Currently, EFE has four major community integration advocacy efforts: 1) a federal class action lawsuit on behalf of people with developmental disabilities in large private state-funded facilities; 2) a federal class action lawsuit on behalf of people with mental illness in large private state-funded facilities; 3) numerous lawsuits on behalf of young adults who are at risk of institutionalization because they are "aging out" of the State's Medically Fragile, Technology Dependent Children Program; and 4) a federal complaint seeking to prevent the State from reopening Lincoln Developmental Center.

Advocating for Adults with Developmental Disabilities to Live in the Community

Illinois ranks 49th among states in placing individuals with developmental disabilities in small integrated community settings. Illinois' antiquated policies channel many people with developmental disabilities into its nine state-operated developmental centers or into a system of approximately 250 large privately run state-funded congregate care institutions called Intermediate Care Facilities for Persons with Developmental Disabilities (ICF-DDs). More than 6,000 of Illinois' residents who are developmentally disabled are currently housed in these large ICFDDs. Illinois has the third-highest rate of private institutional placement in the nation.

In July 2005, nine Illinois residents sued state officials on behalf of a class of plaintiffs with developmental disabilities who are institutionalized or at risk of institutionalization. The suit alleges that Illinois has failed to provide developmental disability services in community settings and has instead segregated people in large private institutions as a condition for receiving services. EFE is co-counseling this case with the law firm of Sonnenschein Nath & Rosenthal LLP (which is working as trial counsel on a pro bono basis), the American Civil Liberties Union of Illinois, Access Living and the Public Interest Law Center of Philadelphia.

The Illinois Health Care Association, a group of parents of adult children residing at Misericordia and a group of parents of adult children residing in various other private institutions tried to intervene in the lawsuit, claiming that the lawsuit denied choice of where to live. Federal Judge James Holderman denied the petitions to intervene, finding that the lawsuit "is replete with language of choice, demonstrating that the relief sought is not a mandatory community setting for all, but a choice of either a community setting or an institutional setting." Subsequently, Judge Holderman certified the case as a class action, and the case is set for trial in January 2008.

Advocating for Adults with Mental Illness to Live in the Community

Illinois has chosen to serve a significant number of people with mental illness in large private statefunded nursing homes called, by federal law, Institutions for Mental Diseases (IMDs). Currently, more than 5,000 people with mental illness are housed in 27 IMDs across the state. By placing people with mental illness in these large congregate settings, the State is again ignoring its responsibilities to serve people with disabilities, in this case mental illness, in the most integrated setting. The decision to use IMDs as a primary housing option not only violates the ADA, but is also fiscally irresponsible. The federal government prohibits using Medicaid funds to support these settings, and as a result, Illinois taxpayers are footing the entire bill. If the State chose to serve these people in the community, it could collect federal funds to cover up to 50 percent of their care.

Because the State was unwilling to voluntarily reduce its reliance upon IMDs, EFE and its co-counsel filed a federal ADA lawsuit seeking a court order that Illinois serve people with mental illness in community settings rather than continuing to segregate them in institutions. EFE is co-counseling this case with the American Civil Liberties Union of Illinois, the law firm of Kirkland and Ellis (which is working as trial counsel on a pro bono basis; see the article on page 11 highlighting the firm's pro bono efforts), Access Living and Bazelon Center for Mental Health Law. Currently, the parties are awaiting a ruling from the judge as to whether this case can proceed as a class action.

Advocating for Young Adults to Remain in Their Homes

EFE is representing several young adults who are at risk of being placed in nursing homes because these individuals are "aging out" of Illinois' Medicaid Program for Medically Fragile, Technology Dependent Children (MFTDC Program). The MFTDC Program offers individuals who are under the age of 21 the opportunity to receive services in their own homes rather than being confined to institutions. The participants in the MFTDC Program have complex medical conditions, such as quadriplegia, ventilator dependence and an inability to receive nutrition by mouth. Under the MFTDC Program, children with serious illnesses and injuries have been able to remain at home, where they receive the love of their family and friends, attend school and participate in community life.

When children turn 21, they lose eligibility for the MFTDC Program and become eligible for another Medicaid program – Illinois' Home Services Program (HSP). Unfortunately, Illinois arbitrarily and artificially caps the amount of funding that HSP participants can receive. This restrictive funding makes it impossible for former MFTDC participants to receive enough nursing services to remain at home, putting them at risk of institutionalization in a nursing home. Nursing homes are utterly inappropriate for these young adults, as the nursing homes are generally located far away from family and friends, offer no educational or social opportunities, do not provide an adequate level of nursing care and have a high rate of opportunistic infections, which can be deadly for medically fragile individuals.

EFE is currently involved in the cases of six young people who are aging out of the MFTDC Program, three young men and three young women. Five of the cases are being litigated against the State in either federal or state court. In four of the cases, EFE is the sole counsel for the plaintiff. In the fifth case, EFE is co-counsel with Prairie State Legal Services. EFE filed an amicus (friend of the court) brief in the sixth case, for which Prairie State is counsel. In each of the cases, the plaintiff alleges that Illinois' policy and practice of capping the benefits in the HSP violates the ADA.

All of the plaintiffs are integrated into their communities and have extremely close relationships with their families. Under the HSP, these parents are expected either to acquiesce to having their children go to a nursing home or to make extreme physical and economic sacrifices to provide direct care for their children, something that most of the parents are simply unable to do.

Advocating Against the State's Plan to Reopen Lincoln Developmental Center

Lincoln Developmental Center (LDC) was a large state-operated institution opened in the 1870s that housed more than 450 people with developmental disabilities. After a decade of investigations by EFE and state authorities uncovering widespread abuse and neglect of the institution's residents, then-Governor Ryan ordered LDC shut down in February 2002. These abuses included sexual assault; the drowning death of a resident left behind after an outing to a public swimming pool; the death by asphyxiation and suffocation of a resident who was restrained face-down for 35 minutes by five staff members; a nurse choking a resident with a bed sheet; several residents ingesting nonfood items, such as pen caps, latex gloves and medication prescribed for other people; and a staff member forcing a resident to lick her own urine from the floor.

Despite these widespread abuses, during the 2002 gubernatorial campaign, in response to pressure from unions and from political and business leaders in the Lincoln area, future Governor Blagojevich promised to reopen the institution. While other states have successfully integrated people with developmental disabilities into the community, Illinois continues to move backwards by seeking to expand institutions.

EFE and other disability advocacy organizations strongly advocated against the reopening of LDC, but the State continued with its plans. Accordingly, EFE filed a federal complaint with the U.S. Department of Health and Human Services, requesting that federal funding be denied for LDC. Weeks after filing the federal complaint, the money to fund the reopening of LDC was removed from the state budget and the plan for reopening Lincoln was put on hold for a year. In addition, legislation is pending mandating that the LDC grounds be used as a clinic for veterans instead of a state institution. While EFE is encouraged by these developments, it will continue to pursue the federal complaint until there is a commitment from the State to keep LDC closed.

The Future of Community Integration in Illinois

The State of Illinois is at a crossroads. At this point, the State is choosing to defend against numerous lawsuits that seek to increase community integration opportunities for people with disabilities. EFE is committed to vigorously pursue these and other advocacy efforts so that people with disabilities truly have a choice to live in the community and the ADA's promise of integration becomes a reality in Illinois.

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