Wednesday, June 27, 2012

Guardians of Jacksonville residents ask for more transparency

A building on the campus of Jacksonville Developmental Center
By Jamey Dunn

As Gov. Pat Quinn’s administration starts to move people out of the Jacksonville Development Center, guardians of residents are calling for more oversight and an investigation into a former resident’s recent injury.

The American Federation of State County and Municipal Employees Council 31, which represents many of the workers at developmental centers, claims that a former Jacksonville resident suffered a broken leg, which required surgery, after being moved into a community setting. AFSCME claims that Quinn’s administration has moved residents out of Jacksonville with 48 hours notice and no previous visits to determine if residents will be comfortable in their new homes.

Quinn’s administration has said that the injury was the result of an accident, but critics question whether it was caused by a rushed transition plan. They are calling for an investigation into the incident. “I just don’t believe in coincidences. I just don’t believe there was a well-thought out plan for here,” said Rep. Jim Watson, a Republican from Jacksonville. “That’s what we’re asking is: Demonstrate to us, prove to us, that you really did think this out for this individual because I think this is an indicator that maybe it’s not working so well.”

Watson opposes the closure of the Jacksonville center, but he said he understands that Quinn plans to move ahead. Lawmakers appropriated money to keep the facility open, but they gave Quinn the flexibility to use the money on the transition if he decides to stick by his closure plan. “You’ve got a line item in the budget. You don’t have to rush this,” Watson said.

Parents and guardians of Jacksonville residents met with Quinn’s staff today to voice their concerns. “It seems like a haphazard approach has been used. There have been broken promises, not much in the way of transparency, and it seems like the whole truth is not being told to parents and guardians,” said one letter delivered to Quinn by the group today.

In addition to asking for an investigation of the injury, guardians asked that a special oversight panel be created to monitor the transitions of residents who are wards of the state. “It’s just rushed. It’s not in the best interest of [the residents.] The ones who are being moved out first are the wards of the state. There is no one looking out for them. These are people without family members. The oversight committee would be able to look at the transition procedures and make sure that they were done in a safe and adequate way,” said David Iacono-Harris, whose son lives at Jacksonville. He said such a panel would be made up of parents, advocates, caregivers and representatives from the Department of Human Services. “A whole mix of people, so we can actually see what is happening. And it hasn’t been pretty yet.” However, a spokeswoman for DHS said that the Office of the State Guardian is already fulfilling that role. She added that the department is looking into the reported injury.

Quinn’s staff listened to the guardians but reiterated the governor’s intent to close Jacksonville. “There’s no question that we share your interest in making sure that your loved ones are respected and cared for as this transition unfolds,” Ryan Croke, Quinn’s deputy chief of staff, told the group.

“We want to hear from the families. This is a collaborative process. But the bottom line here, the most important thing here, is that we want to improve life, the quality of life, for these people with developmental disabilities. Transitioning them into community based settings taking a focused person-based approach is the way to do that,” said Annie Thompson, a spokeswoman for Quinn.

But parents complained that the administration is not communicating with them. “I’ve not been contacted by anybody yet for a transition plan,” said Robyn Pannier, whose son, Benjamin, lives at the Jacksonville center.

While they group said it wants more oversight, ultimately most of them do not want to see the facility closed. Pannier, who said her 36-year-old son has the mentality of a 7-year-old, said that she does not think he will thrive in a community setting. “You wouldn’t take your 7-year-old child and put him in apartment with people to come in once in a while to check on him and help them out.” She said her son was arrested twice when he lived at smaller facilities because the staff could not handle him. “Community living does not work for us. Been there and done it. Ain’t doing it again.”

Tony Paulauski, executive director of the Arc of Illinois, said that the transition plan DHS is using could become a template for other states. “I think it’s a national model. It’s that good.” The advocacy group, based in Frankfort, recently gave Quinn an award for his efforts to move the state away from caring for the developmentally disabled in institutional settings. Paulauski said there are many positive examples of former developmental center residents benefitting from community care. “I’ve heard about some really neat success stories.” He pointed to a former resident who lives closer to his mother, and as a result, got to see her three time in one weekend and a former resident who got to indulged in his love for fishing. Those things would have been impossible in their former living situation, where “rules and regulations are like [those in] nursing home," he said.

Paulauski said that parents who are concerned have opportunities, such as informational sessions put on by DHS, to learn more. He attributes previous failures to placements that were not tailored to meet individual needs. “It’s a lot different than before. ... It’s not just a bed someplace.” He said that more than a dozen states have eliminated their institutions for the developmentally disabled and predicts that number will reach 25 in the next five years. “So this is going to happen in Illinois.” Paulauski said that parents and guardians need to accept the change and work to get over their fears. He said it is difficult but said that families that have already been through the transition could help. “There’s no doubt that everybody can live in the community with the proper supports.”

But Watson said it is Quinn who needs to be more proactive. He said the governor should establish a more hands-on approach when it comes to communicating with families and ensuring his plan is safe. “He needs to find out and not just take anybody’s word for it that, oh, it was done OK. He needs to dig down and drill down and find out. Because ... it’s his decision at the end of the day.”

For more on the debate over caring for the states developmentally disabled population, see Illinois Issues February 2012.

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