The state recently announced it is closing Choate Mental Health and Developmental Center’s general units serving people with developmental disabilities in Anna. In explaining that decision, Gov. JB Pritzker noted that despite the state’s efforts, long-standing problems with the facility remain, and that Illinois needs to move away from its reliance on state-run centers “because the better setting for people is in community homes” and “where they would prefer to be.”
The Arc of Illinois, Access Living and Equip for Equality strongly support this direction, which will align the state with legal requirements and best practices for supporting people with developmental disabilities. The move away from state-operated developmental centers allows people to live in their communities, remain connected to family and friends and have greater say in the lives they lead. Just as most people do not want to end up in a nursing home, this also is the case for people with developmental and other disabilities.
Conversations about closing the general developmental disability units at Choate and similar centers too often lose focus on the individuals central to the service system. Instead, the focus is on jobs and economic impacts on local communities. Although affected employees and communities are important, we must focus on solutions that result in better outcomes and are consistent with what people with developmental disabilities actually want.
Ensuring that Illinoisians with developmental disabilities have access to robust community options is not a new concept. In fact, in 2000, Congress passed the Developmental Disabilities Assistance and Bill of Rights Act, stating that it is our nation’s goal to ensure that people with developmental disabilities “achieve full integration and inclusion in society.”
This move also is not a Republican versus Democrat or Northern Illinois versus Southern Illinois issue. It is a civil and human rights issue. Many states, red and blue, made this transition years ago. As Illinois and other states have experienced, these high-cost institutional settings are not suited to accomplish their legally required purpose of readying people to return to their communities. Instead, they too often become long-term placements — often several years to decades — that effectively segregate people with developmental disabilities from community life and society. Also, like Illinois, across the country this model of care has been plagued by intractable problems with poor care, abuse and neglect.
In addition, the cost of care in community settings is, on average, much less than that in state-operated developmental centers. Ensuring a robust community system is not only the right thing to do, but it also is the most cost-effective approach. There are real gaps in Illinois’ current community system. Some people with developmental disabilities have experienced failed placements or have been unable to secure a full range of services they need to succeed in the community. A stronger community system must address those gaps directly.
The question is no longer whether Illinois should move toward community living. The question is whether we take this opportunity to do it right.
Getting the direction right is not the same as getting the transition right. Community living must mean more than a new address. It also should mean greater choice, stronger relationships and more control over the decisions that shape a person’s life. For some people, that may mean living closer to family, friends and the people who know them best. For others, it may mean choosing who they live with, how they spend their days or what supports they receive.
That is why we support Illinois taking the time to do this thoughtfully. Illinois still has roughly 1,400 people living in state-operated developmental centers, many with significant support needs. To ensure their needs are met, successful transitions will require adequate funding, well-trained staff, appropriate clinical and behavioral supports and providers equipped to meet a wide range of needs. And families, guardians and trusted supporters should have meaningful information and a role in the process.
Building trust requires the state to build a community system that protects the rights of people with disabilities and values their experiences. The state must ensure that the necessary array of services and supports are available and that there is effective oversight.
Redesigning Illinois’ system won’t be easy, but the time is now, and it is the right thing to do.
Samantha Alloway is executive director of The Arc of Illinois. Karen Tamley is president and CEO of Access Living. Zena Naiditch is founder, president and CEO of Equip for Equality.
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