By Shen Wu Tan
The seven Illinois state-operated developmental centers, housing individuals with developmental disabilities, will not close, according to the second proposed state budget.
Due to the number of individuals still living in these centers and the amount of time it takes to transition these residents into the community, the state cannot justify shutting down the centers, said Marianne Manko, director of communications at the Illinois Department of Human Services.
“Everybody’s situation is so specific to them so we have to measure who is capable of living in what type of a situation that is going to be the safest for them and provide them with the best services,” Manko said. “Is it possible that we will keep other institutions open? Absolutely. Is it possible that we could shut all of them down over a ten-year period, for example? That is a possibility, too.”
Although no state centers will close, the Illinois Department of Human Services aims to have 50 fewer residents in state centers each year. Depending on the number of individuals entering centers, the number of residents who transition to community living varies from year to year.
Tony Paulauski, executive director of the Arc of Illinois, said he is disappointed that the budget plan does not include the closures of state centers. The organization called for the closures of six of the seven developmental centers, also referred to as state institutions.
By not closing developmental centers, Paulauski said the “second budget really flies in the face of all of the data” that displays the high costs of placing an individual in institutionalized care. “It’s better for people’s lives to close state institutions and invest in community living.”
The Arc of Illinois estimates the state spent approximately $429 million in 2014 during the Quinn administration to operate state developmental centers that served about 1,700 individuals with developmental disabilities.
For the 2017 fiscal year, the proposed budget sets aside $290 million for state institutions, according to Manko. The DHS reported that 1,662 residents live in developmental centers as of March 1.
Margaret Doering, 73, lived in Illinois state institutions for 63 years. Her parents moved her to the Dixon State School at age two, after listening to a family doctor’s recommendations that she should be institutionalized.
Declared as a ward of the state, Doering was taken to the institution by uniformed government officials and had nearly no contact with her family. Her younger sister, Katherine Hamann, didn’t even know she existed until she was 12.
Doering lived at the Dixon State School in Dixon, Ill., until she was 37 when the institution closed. Hamann then became her sister’s guardian and began working at the William A. Howe Developmental Center, where her sister transferred to and lived until she was 65.
While sifting through Doering’s Dixon State School records, Hamann discovered that her sister was sent to the infirmary repeatedly for multiple illnesses including hepatitis, dysentery and liver damage. As a way to prevent her from wandering at night, the staff tied Doering to her bed and overmedicated her, Hamann said.
When Hamann visited her sister at the state school, she was forced to travel to the outskirts of town to a building isolated by corn fields. During her first visit, she was overwhelmed by the number of people with disabilities crammed into one space.
There were about 140 residents living in Doering’s cottage, a space that could comfortably accommodate no more than 40 residents. The dorm-like bedrooms had four beds to a room and a lot of the furniture was built into the walls. Many of the residents, Doering among them, would pace about a large day room.
Once Doering moved to the Howe center, her quality of life improved but was not much better, according to Hamann. Doering shared a room with two other women and her possessions were constantly stolen or trashed. For the most part, residents were stuck in the center since staff did not often bring them to activities.
After 28 years at Howe center, Doering moved to the Sertoma Centre, a community living arrangement for people with developmental disabilities. She has lived there for the past eight years.
At the center, Doering receives more individualized attention and medical care and frequently socializes in the community, Hamann said. She has also stopped humming, a habit that Hamann said was a sign of distress that persisted at both state institutions.
While working as a state employee at the Howe center, Hamann became familiar with the type of care offered at state institutions. Now, as a part-time employee for the Arc of Illinois, Hamann works on the Going Home media campaign, which promotes the closure of institutions.
Through her work at the Arc of Illinois, Hamann said she continues to learn more and more about community living.
“In fact, a lot of people do better [in community living],” she said. “Some people with the biggest physical and behavioral challenges, if they get the right support, they get much more individualized attention.”
“I don’t think that they [developmental centers] are offering the type of care that we are paying for,” Hamann continued. “I think there is a tremendous amount of waste and overhead and a lot of money distilled into keeping these kind of falling apart, old buildings together. It’s just, in general, wasteful.”
However, Rita Winkler, president of the Murray Parents Association, said she thinks there is a need for developmental centers. She said these centers are essential because they can be the least restrictive environment for some including her son, Mark, 31, who has received quality care at Warren G. Murray Center in Centralia, Ill. for 20 years.
“He is so happy,” Winkler said. “He is so well cared for. He has people who have worked for him, the same people that have worked with him for 16 years that know him inside out and upside down.”
Over 230 residents who live at Murray center have access to around-the-clock medical staff and also have the opportunity to actively engage with the community, Winkler added. “They go to basketball games. They go to movies. They go shopping. They go everywhere.”
For the Murray center, this is not the first time someone has tried to shut down its facilities. In 2012, Governor Quinn announced his plans to close the center, but the Murray Parents Association fought back by filing a federal lawsuit against the state to prevent the closure.
In 2014, Judge Marvin Aspen ruled in federal court that the state had the right to close the center, but under federal law, Illinois had to offer the residents all choices for living including state centers. The state halted all closure activity, and the US District Court in Chicago dismissed the lawsuit in March with the judge’s ruling intact.
“Under federal law, we have a right to a state center,” Winkler said, referring to the 1999 Olmstead v. L.C. Supreme Court case. “We have a right to a nursing home type center. Or we have a right to live at home with our family or in a small CILA [Community Integrated Living Arrangement]. It’s called choice, and that is what the federal ruling is.”
“I just think there needs to be a wide range of services,” Winkler said. “And I think if the state of Illinois would use our money properly, we could probably help all of these people and do it right.”