Housing rights choice rests with judge
By Jamie Loo
First Amendment reporter
CHICAGO—Amanda Umstatte strode confidently past her mother and handed a slightly crinkled handwritten letter to the judge.
Returning to the podium, Umstatte, told the packed courtroom that she is an adult and voted in the last election. She likes to go shopping, watch movies and knows the names of everyone at the neighborhood grocery store. Umstatte, 21, said she is ready to move out of her parent’s house and wants to have a job and her own place to live. She doesn’t want to live in a group home or a facility. Although Umstatte’s words came slowly in the muffled drawl that characterizes the speech pattern of those with Down’s syndrome, her message was clear: she wants to choose where she lives.
“It is my choice. I want to control my life,” she said. “I will need help but this is my goal.”
But to 90 year-old Catherine Ryan granting Umstatte’s choice could mean taking away a housing choice from people like her daughter Mary. Ryan wrote to the court that parents like her worry what will happen to their developmentally disabled children after they’re gone and that the court’s decision could result in Mary and others being taken away from their loving, caring environments in Intermediate Care Facilities for the Developmentally Disabled (ICF). Although the consent decree doesn’t force anyone to move out of an institution if they wish to stay, Ryan and others are concerned that funding will be diverted from the ICFs, lowering quality and forcing facility closures.
The housing rights of the developmentally disabled are now in the hands of U.S. District Court for the Northern District of Illinois Eastern Division Judge James Holderman who will be issuing an order. A fairness hearing on the case was held on Wednesday.
The decision could mean expanded programs and services for the developmentally disabled in housing placement. But for others an unfavorable decision will place unnecessary stress on the disabled and their families. They worry it could lead to the closing of institutions particularly as the state looks to cut funding to human services in the midst of a budget crisis.
A settlement, known as a consent decree, was negotiated between the nine plaintiffs in the case and the state last October. If approved by the court, the consent decree would become a binding contract that the state would have to follow.
The consent decree in this case requires the state to create a service plan for all individuals with developmental disabilities before enrolling them in a private ICF or a waiver-funded program within three years.
The decree doesn’t apply to state-run facilities.
Evaluations will be performed annually on all people with developmental disabilities currently living in intermediate care to see if they will benefit from living in a Community Integrated Living Arrangement (CILA). A CILA promotes independent living, economic self-sufficiency and interaction with non-disabled people. All people who are eligible and want to transition to a residential setting will be required to move in six years.
Under the decree, the state will also be required to maintain a database of individuals with developmental disabilities who reside at home who are in need of community-based service programs, or placement in a residential setting.
If approved the agreement could bring Illinois one step closer to compliance with a ruling handed down by the U.S. Supreme Court in Olmstead v. L.C. In the 1999 case, the Supreme Court ruled that unnecessarily institutionalizing a person with developmental disabilities is discrimination under the Americans with Disabilities Act if that person could live in the community with some support. The ruling required states to create comprehensive plans to evaluate those who are, or who are at risk of, being institutionalized unnecessarily.
Equip for Equality, a non-profit advocacy group for the developmentally disabled, has filed two other lawsuits to try to get the state to be more compliant with the ADA and the Olmstead decision. Barry Taylor, legal advocacy director for Equip for Equality, said Illinois is one of the most highly institutionalized states in the country and ranks last with respect to community placement for people with developmental disabilities. Taylor said they hope that by taking this step with private institutions it will open to doors to changes in the state’s facilities in the future.
Most people think community-based settings for the developmentally disabled are only group homes or facilities, he said. But Taylor said there are also many apartments or home settings with support services, and that some state funded providers at ICFs seem ready to convert their services to these smaller non-residential settings. He said one of the highlights of the decree is the creation of an “emerging crisis” category to offer services to the developmentally disabled that are at-risk of institutionalization. He said many people in this group live at home with aging caregivers and will need housing options in the future after these caregivers pass away.
But to many opponents at Wednesday’s hearing, the agreement between the state and the plaintiffs doesn’t represent their interests. They said the agreement discriminates against ICFs, with wording that is heavily biased toward community-based settings and makes larger institutions seem inferior.
Scott Mandell, an attorney for the objectors, said the annual evaluation process by an independent professional, could cause undue stress and harm to the developmentally disabled and that it duplicates evaluations already conducted by staff at ICFs. Mandell said the wording only requires this annual review for those in ICFs which doesn’t treat them equally with those in CILAs. He said individuals and their families should be able to opt-out of the yearly evaluations if they choose to stay in their ICFs.
Rita Burke, president of the Illinois League of Advocates for the Developmentally Disabled, said part of the Supreme Court’s Olmstead decision also called for “fiscal responsibility” in implementing changes. She said the state will feel pressure to shift funds to community-based living to comply with the consent decree, which will mean a loss in services for those in larger institutions. Burke and others questioned how this mandate will be funded when the state still hasn’t passed a budget for next year and initial budgets showed millions of dollars in cuts to human services, including state funding to ICFs.
Marcella Meyer said ICFs are being characterized as cold facilities where progress for the developmentally disabled is stunted. But her daughter, Charlotte, has thrived at the St. Mary of Providence facility where she has access to doctors, specialists, and activities such as sports. Meyer said Charlotte, has “three drawer-fulls of medals from Special Olympics,” which is an opportunity she may not have had at a smaller community living arrangement. Charlotte also works part time in the ICF’s kitchen and a staff member walks with her and other residents to a local bank to deposit their pay checks in individual bank accounts. Meyer said she doesn’t doubt that there are bad ICFs in the state, but the answer isn’t to do something that may divert funds and close all of them. She said it’s also unclear what will happen if an individual or their family members object to an independent evaluator’s opinion.
Yvonne Beer-Reedy said her 48 year-old daughter Laura has been on a CILA waiting list for 20 years. Beer-Reedy said they’ve turned down five different ICF facilities during that time period because of the poor living conditions she witnessed on visits. Beer-Reedy said she feels the consent decree will lead to more CILAs and offer broader services. She said the annual evaluations are not meant to hurt the developmentally disabled and are simply providing them other options to meet their needs, which may change over time.
After his family moved to Illinois in 1994, James Cicarelli said he hoped his son David would have options similar to their previous homes in New York and Ohio. He said David would’ve been eligible to live in a community living arrangement after he finished high school in New York. What they found was an antiquated system for the developmentally disabled that doesn’t provide enough funding for community services options, Cicarelli said.
Patricia Downey said her sister tried living in CILAs and that it didn’t work out. After moving her sister to the Beverly Farm ICF, her sister did much better. Downey said she agrees with the goals of the consent decree but worries that CILAs will come at the expense of ICFs.
Illinois Department of Human Services division of developmental disabilities director Lilia Teninty said the state wants to offer a full continuum of care. Teninty said the thousands of people on waiting lists show that the state isn’t providing enough options for the developmentally disabled and the consent decree will allow them to do more.
When Holderman asked Teninty if the state had “seen the light” and would be willing to improve placement options and services for the developmentally disabled without a court order, Teninty said that the state is making progress but couldn’t guarantee anything. Based on her experience working in other states, she said a court order could add the weight that is needed to keep the changes moving forward. If the consent decree is approved, Teninty said the implementation plan would be up for public comment and everyone would have a chance to voice their concerns.
Kendra Hartman, an attorney for the plaintiffs, said the state’s “good intentions” are not enough and that many good intentions by the state go unfulfilled. Hartman said they need “enforceable options” that allow individuals and their loved ones to make informed decisions about where they live.
SIDEBAR: Ligas v. Maram
The consent decree stems from the Ligas v. Maram case, which was filed in 2005. Stanley Ligas, 40, has Down’s syndrome and has been living in an Intermediate Care Facility for years. Ligas reads, holds a job at a Popeye’s, and knows how to balance his checkbook. Although staff at his ICF determined he was ready to move in 2004, he couldn’t leave because there were no smaller community based settings that offered the services he needs. Ligas was joined by eight other plaintiffs in the class action suit against the state.