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Wednesday, Dec. 17, 2008 12:29 pm

Lawsuit opens up more housing options

Developmentally disabled seek shift away from institutional care

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Developmentally disabled want to live in smaller, community-based settings.
PHOTO BY JAY JANNER/MCT

At first Catherine Dennis seems like any other mother.

Every day the Auburn native wakes up, gets her son ready and heads to Bethesda Lutheran Homes and Services in Springfield, where she works as a resident nurse. The somewhat considerable difference for Dennis is that her son, Justin, a 30-year-old who has autism, goes with her.

Justin waits at Bethesda, an agency that supports people with developmental disabilities, until a bus from Sparc, another local social services agency, picks him up. In the early afternoon Sparc returns him to Bethesda. He hangs out there until his mom gets off.

Even though this arrangement works — Justin loves Bethesda and the organization is comfortable with him being there, Dennis says — it’s unfair that her adult son’s life depends on hers.

“He’s not very verbal, but from his behavior and from what I sense he’s telling me, he wants to have his own life,” Dennis says. “He wants to have time with his peers and a chance to develop on his own and to not always be with mom.”

Dennis and parents facing similar situations have been told in the past that there’s only one solution: intermediate care facilities for the developmentally disabled (ICF-DD), or private, state-funded, 16-plus-bed institutions. Dennis says this isn’t what Justin wants, and for other individuals who agree, more alternatives may soon become available.

In 2005, nine people with developmental disabilities who live or who have been told to live in ICF-DDs filed a class action lawsuit against the Illinois Department of Healthcare and Family Services and the Illinois Department of Human Services. The plaintiffs allege that “unnecessary institutionalization” violates the Americans with Disabilities Act, as well as the Social Security Act, which requires states to provide individuals with alternatives to institutional care.

In their complaint, plaintiffs state: “Despite the demonstrated advantages of community-based programs, defendants administer an antiquated system for serving people with developmental disabilities that relies heavily on large public and private institutions, including ICF-DDs. This system defies the national trend of serving people with developmental disabilities in the community.”

On behalf of all Illinois residents with autism, epilepsy, cerebral palsy, or mental retardation, plaintiffs are seeking the chance (and the funding) to live in smaller, community-based settings, such as their own apartments or five-or-six-person group homes.

Barry Taylor, the legal advocacy director for Equip for Equality and lead counsel in the case, says they decided to file the lawsuit after Illinois officials ignored calls to change their policies. Illinois currently houses 6,000 people with developmental disabilities in 250 ICF-DDs across the state, and, he says, according to national statistics, ranks 51st in the United States and the District of Columbia in serving the disabled in integrated settings.

“A lot of states changed their social service model to rely on community settings, and Illinois did not,” Taylor says. “[There are] two reasons why a state has changed, one is strong leadership by the governor in that particular state to make those changes. The other is that litigation has been filed, forcing states to make the changes they are unwilling to do voluntarily. We tried the first route and it was unsuccessful.”

In November, Illinois officials agreed to a consent decree — a plan proposed by plaintiffs — which, if approved by the court, would mandate that all people with developmental disabilities living in ICF-DDs receive individual evaluations and the choice to move to a community-based setting within six years.

The decree also includes a provision for future clients or for those who later decide to leave an institution. After the six-year period, individuals who request a move to a community-based setting can transition within 90 days.

Katherine Dunbar, the regional director for Bethesda’s central region, points to an additional change that she says will help a lot of Illinois families: the integration of the “emerging crisis” definition. Individuals in crisis situations are already given prompt services, she says, but now individuals in “emerging crisis” situations (for example, their caregiver is ill or cannot provide care within the next year) can be placed in community-based settings within 90 days of their request.

“I get a lot of calls where people say, ‘I’m 78 years old, I’m pretty healthy, but in the very near future, I might not be able to care for my son or daughter anymore,’” Dunbar says.

“In [Dennis’s] situation, where her son would like to have services, and she would like to have services for her son, he is considered an emerging crisis. ”

The plaintiffs and the state have filed a joint motion for preliminary approval of the consent decree and will appear before a judge Thursday, Dec. 18 (today). Taylor says the judge could approve the decree, ask for adjustments to be made, or reject the agreement entirely and set the case for trial. Both parties hope for approval, he adds.

Dunbar and Dennis remember the day they received the consent decree via e-mail, saying it was exciting moment for everyone in their office.

“It’s a good turn of events for Illinois,” Dunbar says. “Just having the opportunities available for people to live in the community is — well, everybody’s called it a landmark lawsuit and groundbreaking — but, honestly, it’s the way it should have been done a long time ago.”

For more information on the case, visit www.equipforequality.org.

Contact Amanda Robert at arobert@illinositmes.com.

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