We Need to End the Era of Segregation

by Zena Naiditch

Equip for Equality's President and CEO Zena Naiditch Equip for Equality serves as a catalyst for social change, seeking to break down barriers that prevent children and adults with disabilities from participating in all aspects of community living. In Illinois, foremost among these barriers are the high level of institutionalization of people with disabilities, seriously under-funded systems of community supports and services, and failure to provide children with disabilities with appropriate, individualized education in least restrictive settings. The disability community needs to find systemic solutions to these longstanding problems.

Through our 50-state study on deinstitutionalization and community integration, funded by the Illinois Council on Developmental Disabilities, we learned that the states able to built strong, community-based systems were those that shared several common characteristics: the governor and his key staff exercised leadership on the issue, litigation was used as a catalyst for change, efforts were made to secure buy-in from key stakeholder groups to reduce their concerns, and the state maximized its use of federal Medicaid funding.

When Equip for Equality released its national study last summer in a joint press conference with Access Living at which representatives from People First of Illinois spoke, we strongly urged the governor to take timely, voluntary action to bring the state swiftly towards compliance with the ADA and the U.S. Supreme Court's Olmstead "community integration" decision. We stressed that the disability community was growing impatient. Although I was not surprised, I was disappointed at the governor's continuing inaction. Litigation could have been avoided.

This past July, Equip for Equality filed a class action lawsuit against the state for its heavy reliance on large, privately-run congregate care institutions where more than 6,000 Illinois residents with developmental disabilities live. Our co-counsels are Access Living, the American Civil Liberties Union of Illinois, the Public Interest Law Center of Philadelphia, and the law firm Sonnenschein Nath & Rosenthal LLP. I want to thank Sonnenschein for its pro bono commitment of legal resources to this case. Our goal is to ensure that the state's public funds are reallocated to community services and supports so that people can live where they choose.

Equip for Equality's goal of ensuring that people with disabilities receive services and supports in least restrictive settings includes children in schools. The Individuals with Disabilities Education Act (IDEA) mandates that all children with disabilities receive appropriate, individualized educational programming and supports in the least restrictive setting. Without such an education, students will not benefit from anti-discrimination laws like the ADA, as they will not acquire the skills and knowledge they need to move on to college or a meaningful career.

In the last issue of the Equalizer I reported that, according to a recent legal needs study, Equip for Equality handles more than half of all education cases performed by the 23 legal aid providers in the state. Although Equip for Equality is the primary provider of legal advocacy assistance in special educatoin, we must remember that most of those who contact us for assistance in this area receive brief advice and referrals, and, while this appears to be sufficient for some parents, others require more intensive advocacy services. Despite this significant commitment of our limited resources, each year, when we ask for public input on where to focus our work in the coming year, many participants ask us to increase our advocacy in special education, including expanding the availability of representatives for parents at key school meetings and administrative due process hearings. We have also been told to focus more resources on helping to ensure that schools meangingfully engage their students and parents in the transition process from school-to-work or college, a federal requirement.

We recognize that we need to find a more systemic approach to the challenges facing parents in their efforts to advocate for their children with disabilities. Along with the three federally-funded Parent Information and Training Centers in Illinois — Designs for Change, the Family Resource Center on Disabilities and Family Matters — and other parent support organizations, we need to find a way to reach out to parents, including those in underserved communities, and to provide them with quality information; resources; self advocacy training; and representation in negotiations, administrative hearings and court, when necessary.

Earlier this year, the Chicago Bar Foundation awarded Equip for Equality an Emerging Issues grant of $20,000 to build a plan for a special education advocacy clinic. Our goal is to create a new clinic that provides comprehensive support for parents of children with disabilities by forming strategic partnerships with other private nonprofit and public agencies around the state and finding new ways to deliver quality advocacy services and cover the costs of delivering these services. In the coming weeks, we will be talking with parents, educators, advocates and others to solicit their ideas and secure their commitment to work together to support parents in their efforts to be well informed, effective advocates for their students in partnership with their schools. I welcome your ideas and support of this exciting new initiative.

We have much to celebrate as we turn 20, and much work ahead of us. We envision a world free from policies and practices that deny children and adults with disabilities their rights to self-determination and community integration, and we look forward to working with you in the years to come on our joint quest for social justice.

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