Posted by StreetWise in Magazine Articles
On April 19 the first patient at Murray Developmental Center in Centralia moved out of the facility to a group home in East-Central Illinois as part of Gov. Pat Quinn’s effort to close state-operated institutions, but the remaining 253 patients might not be able to do the same. That same day, Illinois legislators filed HR 273 to stop the closure of the institution, and by May 31, officials had postponed the process.
Quinn’s Rebalancing Initiative, which intended to close Murray by November, is a 2.5-year plan launched in November 2011 to close four state-operated developmental facilities, transfer patients to community settings, and redirect funding to community-based services for people with disabilities.
“It’s a model for the nation,” says Tony Paulauski, executive director of The Arc of Illinois, an advocacy organization for the disability community. “I’ve been doing this for 40 years, and I haven’t seen any governor step up the way he has.”
Illinois pays approximately $240,000 to care for each patient per year at the Murray Center, while it would pay an estimated $50,000-80,000 on average for community-based disability services, Paulauski said. The savings would be reinvested into these services, according to the legislation.
More important, living in a home of one’s choice affords people with intellectual and developmental disabilities greater opportunity to participate in a community, be productive and social, live close to family and friends, and enjoy a higher quality of life, thus ensuring the same rights and dignity as those without disabilities. In Olmstead v. L.C., the Supreme Court ruled that states must “eliminate unnecessary segregation of persons with disabilities and ensure that [they] receive services in the most integrated setting appropriate to their needs.”
“[But] you can’t just move someone into a house,” says Paulauski. “You have to understand their needs and the families’ needs.”
This is known as “person-centered planning”—experienced providers develop services in the community around new residents’ needs and desires to ensure that everyone receives the proper supports necessary to succeed in the community. The process takes an average of six months to a year, depending on the patient, whether the guardians are still active, and how close the patient relocates to his or her family, among other factors.
“It was like I was in a jail, because I didn’t have much to do,” says Jennifer in a video interview on the Arc of Illinois website. She is a former resident at the Jacksonville Developmental Center (JDC), which closed in November 2012 as part of the Rebalancing Initiative. “I’ve got more here than I ever did in JDC.”
According to Paulauski, the closing of JDC was a success. It directly resulted in the transition of 185 patients, most of whom moved to central Illinois. There are still 22,000 children and adults on the waiting list for community-based services, or the Prioritization of Urgency of Need for Services (PUNS) database maintained by the Illinois Division of Developmental Disabilities, because these programs are grossly underfunded, according to the Arc of Illinois.
Thirteen states and the District of Columbia have closed state-operated institutions and now support individuals with developmental disabilities in community settings, but Illinois has been much less receptive. The state itself has brought in national experts over the past 10 years to study how the Illinois Developmental Disability System could improve services and every study has supported downsizing state institutions to invest in a community system, Paulauski said. Still, the Rebalancing Initiative faces stark opposition from legislators, parents, and Illinois unions.
Besides its 253 patients, Murray is currently budgeted for 575 full-time employees. Paulauski and the Coalition for Citizens with Disabilities say these jobs will be transferred to more integrated settings in the private sector.
On the last day of the General Assembly May 31, HR 273 passed the Illinois House 105 to 12. The advisory resolution includes, among other key points, that “The State of Illinois does not have viable alternative options of care for the residents upon their displacement” and that “The Department of Human Services has not had the time to observe and track the progress of former residents of the Jacksonville Developmental Center.”
“It’s sad that people who can’t defend themselves are being treated like this,” says Rep. Charlie Meier, R-Okawville, who introduced the resolution in April. Meier was interviewed by the Decatur Herald-Review.
The concern of legislators responds to the outrage from parents of people with developmental disabilities. Some people with developmental disabilities had come to Murray after life-threatening experiences in community settings ranging from near-suffocation to being drugged into a comatose state, said Rita Winkeler, president of the Murray Parents Association, in an op ed for the News-Gazette in Champaign. Some patients at Murray Developmental Center need around-the-clock care, Winkeler wrote, and many are unable to verbally communicate their needs. Instead, they rely on staff to interpret their nonverbal signals or they require intense therapy to learn how to communicate.
The Arc of Illinois website, meanwhile, cites a 2010 study of 27 families conducted by Sheryl A. Larson and K. Charlie Lakin of the University of Minnesota in which only 15 percent of parents supported community living during institutionalization, but 62 percent reported satisfaction after the transition. Over 75 percent of parents reported that their family member was happier and their relationship had improved.
StreetWise Editorial Intern