When Gwendolyn Jones-Scott learned Gov. Pat Quinn wanted to close a state center for the developmentally disabled outside Springfield, she was terrified about what would happen to her son.
The family had spent years struggling to find care for Dony’a Scott, whose autism and other disabilities meant he was prone to lashing out, sometimes violently. The 24-year-old ended up at the Jacksonville Developmental Center, where staff put him on a strict behavior-modification plan, and Jones-Scott said her son soon seemed happy, sociable and at peace.
Four months after the state moved Scott to a small group home in La Grange, Jones-Scott said her fears have subsided. Not only is her son still doing well, he has his own room. And he’s a 20-minute drive away, instead of the four-hour haul downstate that she had gotten used to.
The case represents a sea change in the way Illinois cares for people with developmental disabilities, which include a wide range of physical, learning and behavioral problems such as cerebral palsy, autism spectrum disorders, attention deficit and hyperactivity disorder and other mental disabilities.
Instead of relying on large state-run institutions that house hundreds of people, Quinn’s administration wants to focus on smaller, more individualized settings. The idea is to allow people with developmental disabilities to live more independently with the help of caretakers, whether that be in small group homes or an apartment down the street.
The state plans to close four of its eight centers for the developmentally disabled during the next two years. In all, 600 of the roughly 2,000 residents will be placed in new homes.
Supporters say the move is long overdue, arguing that Illinois has continued to warehouse people at expensive and out-of-date facilities even as other states moved away from that approach. They say smaller settings within the community will allow those with developmental disabilities to have a better quality of life while ultimately saving the state money.
But critics, including Illinois’ largest employee union, contend that some residents simply are better served in institutionalized settings. They say specialized care simply isn’t available in certain parts of the state, particularly after social service providers have struggled under years of state budget cuts.
The union and a parents group also have raised questions about how the administration has handled moves that have already taken place, saying that in the rush to close facilities, some families are being pressured to make decisions they aren’t ready to make.
The first facility scheduled to close is the one in Jacksonville, about a half-hour west of Springfield. Initially slated to shut down on Oct. 31, administration officials acknowledge they may miss the mark as the state works to match residents with new places to live.
Finding the right setting isn’t as simple as locating a group home with space — it’s a process that can take months for each individual.
First, residents and family members are consulted, then a comprehensive dossier is drafted. It includes everything from a person’s favorite television show, dietary needs and health risks to whether physical or speech therapy is needed and how long someone must help brush the person’s teeth each day.
Then the state works to match people to their preferred housing situation. Some like group homes, others may want to live in an apartment with a roommate they’ve grown close to. The process grows more complex when it comes to making sure residents will have the support they need, from doctors and therapists to caregivers who could do everything from help with the laundry to shop for groceries.
Because the state has for so long focused on institutionalization, that sometimes means waiting while providers hire new workers and upgrade housing to make it more accessible. It can be a slow process, particularly for people with more complex needs, and administration officials acknowledge it will take time to create the infrastructure needed to make the change successful.
“Half the people think we are going too slow, and half the people think we are going too fast,” said Derrick Dufrense, administrative director at the Community Resource Alliance, a consulting firm the state hired to spearhead the transition at Jacksonville. “But I’d rather be criticized for going too slow rather than rushing and realizing we made a mistake with people’s lives. Ultimately, this is not just about finding someone a new program of care, but allowing them to get a new life.”
Opponents say it’s not that easy: Some people simply can’t live in such settings and need the structure that they’ve come to know at a state institution, whether that be because of severe mental disabilities, behavior problems or particularly fragile medical conditions.
“These people aren’t all cut from one cloth — each has specific needs,” said Rita Burke, president of the Illinois League of Advocates for the Developmentally Disabled, an umbrella organization for parents whose children live in state facilities.
“Now, the governor’s office says it is doing person-centered planning, but their person-centered planning has a predetermined outcome, and that is that everyone is appropriate to live in the community. How is that objective when they know before they even look at your son, daughter, brother or sister, where they are supposed to go?”
Burke points to her 42-year-old son, Brian Burke, who lives at the Choate Developmental Center south of Carbondale. She said he was expelled from four private care facilities before he found a stable home there. Rita Burke worries what would happen if Quinn decides to close Choate, saying parents are concerned that the state is placing people wherever a provider is willing to take them, regardless of staff training and qualifications.
“In state-operated development centers, we have people who have dedicated their lives, their professions, to serving these types of individuals,” Burke said. “In the community, that is not what we have. We have direct-care staff who in many cases make minimum wage and have a high turnover rate. We expect that many people aren’t going to do well in community settings because they are just not being offered the same level of care.”
Indeed, the American Federation of State, County and Municipal Employees Council 31, which represents state workers, said one example of poor care came just days after a woman who uses a wheelchair was transferred from the Jacksonville center to a group home outside St. Louis.
While the woman was being moved, she fell off a lift and broke her leg. An inspector general’s report for the Department of Human Services determined that staff members at the group home were negligent, but the agency sent more residents to live there. State officials call the matter an isolated incident, adding that inspectors have since visited the facility to see what measures have been put in place to prevent a repeat of the situation.
The union said there have been other red flags. Officials cite a report from a committee monitoring the closing of the Jacksonville facility that found of the 47 residents moved from April to mid-September, four had run-ins with police, 14 were admitted to the hospital and four more received psychiatric hospitalizations. One resident returned to a state-run center.
“These are precisely the concerns families have been talking about,” said Anne Irving, director of policy for AFSCME. Irving said it is “ironic” that the state is turning to community-care centers after years of funding cuts and delayed payments that have forced facilities to cut staff, consolidate space and carry out other cost-saving measures.
“I don’t know that I would trust this system to care for my loved one,” Irving said.
Quinn officials said the union is making a big deal out of a few bumps in the road in an effort to maintain jobs. They argue that it is too soon to make conclusions about hospitalizations and other incidents involving residents who have already been moved. Aides said the state is constantly monitoring the moving process, including making sure new caretakers are qualified, facilities are safe and residents are settling in.
“This is a state that has been comfortable with the status quo for a long, long time,” said Michael Gelder, Quinn’s senior health care policy adviser. “It’s time for change. It’s not easy, there are a lot of forces at work, but the governor is concerned about providing the best care for people with intellectual challenges. … This is not a jobs program.”
Gelder said no individuals will be forced to move into a community-care setting if they do not want to, and will be instead transferred to another state-run facility of their choice. He said it was “misleading” for opponents to argue that specialized services aren’t available in some parts of Illinois, arguing that the state is in the process of building those resources after years of lagging behind similar efforts around the country.
“This is bold and courageous and really rooted in the governor’s core beliefs that every single person should be allowed to reach their full potential,” Gelder said. “We are really fed by an outpouring of support that we have received. Some of the letters we have received (from residents who have moved) are so heartfelt and deeply appreciative.”
Once the Jacksonville center is closed, the next facility that residents are slated to be moved out of is Murray Developmental Center in Centralia. It is expected to close in the middle of next year. The governor has yet to identify the other two state-run institutions he would like to close by the end of 2014, but those facilities are expected to be named in spring.
It’s unclear if Quinn will push for more closings after that, though longtime advocates already are applying pressure to do away with the large institutions altogether.
“It’s really an outmoded system for caring for people with developmental disabilities,” said Don Moss, a longtime advocate and lobbyist on the issue. “A third of the states have already done away with the institutions, and I’d love for the same to occur for Illinois, too. Residential alternatives can be found where people get the support they need while still being integrated in the community, rather than isolated and out of sight.”