Illinois Battle over state-run institution for people with developmental disabilities is personal, political

as our policy to post different views on issues, wanted to share.

A sign about 10 miles outside of Centralia, Illinois. The push to close the Murray Developmental Center has turned many in the area against Gov. Pat Quinn. photo: Patrick Smith/WBEZ

By: Patrick Smith | WBEZ radio | Oct 13, 2014

Kathryn Groner, 26, has lived at the Murray Developmental Center for eight years.

The Murray Center is a state-run institution for people with developmental disabilities - things like cerebral palsy and autism. It’s a circle of single-story residential cottages on a grassy campus in Centralia, Illinois, about an hour east of St. Louis.

Groner lives in a big room with one other woman. The area around her bed is filled with firefighter memorabilia and dolls. She’s obsessed with firemen and calls people “butthead”--affectionately.

Groner is friendly and funny and completely there.

But she also has what her mom calls “meltdowns,” times when she tries to hurt herself, badly.

“I hardly ever show these to people,” her mom Judy Groner says as she presents a picture of Kathryn with a bruised and battered face. “Broken nose, day after day.”

When she has a “meltdown” Kathryn bashes her head against the wall as hard as she can, or slams her knees up into her face or bites her forearms.

“And afterward she would say to me ‘Mom, you better go and grab the frozen vegetables,’ because that’s what I would put on her bruises afterward. And that was our life. She was going to kill herself by hitting her head so much if I didn’t have a place like [Murray].”

Judy Groner says the decision to place her daughter in Murray was the hardest - and best-  decision she and her husband had ever made.

Before that they had struggled for years to keep Kathryn happy and safe at home, putting a helmet on her and lining her bedroom walls with corrugated cardboard. But eventually it became impossible.

She says Murray is a Godsend, and Kathryn is thriving. She’s down from multiple “meltdowns” a day to about one a week.

That’s why Groner was devastated when, two years ago, Illinois Gov. Pat Quinn announced he would be closing Murray and moving its 250 residents out to group homes in the community.

“We will provide individualized care, and achieve savings for the people of Illinois,” Quinn said in his 2012 budget address.

The announcement was horrible news to Murray residents and their guardians, and they immediately mobilized to fight the closing. But other disability advocates were ecstatic.

The decision was part of the “Rebalancing Initiative,” which also included plans to close the Jacksonville Developmental Center --that center has already been shuttered--and two other unnamed developmental centers. The initiative earned Quinn the President’s Award from an advocacy group called the ARC of Illinois.

Tony Paulauski, the executive director of the ARC of Illinois, says institutions like Murray are outdated and bad for residents. They warehouse people with developmental disabilities, while group homes in the community give people a chance for fuller, normal lives, he says.

In Paulauski’s ideal world, every one of the state’s institutions would close and all of the residents would settle into smaller homes.

“Community living is much more individualized, and presents a much higher quality of life. A much healthier, safer life,” Paulauski says.

And he says it helps the bottom line.

“You can serve three people in the community for the cost of one person in the institution,” he says.

Depending on who you talk to, that would either mean a savings for the state or it would allow the state to help more people. More than 20,000 people are on the state’s waiting list for some kind of developmental disability service. Advocates say moving people out of expensive institutions will allow people to come off that list.

A room of his own

Eddie Fleming lived in the Jacksonville Developmental Center until it was closed in 2012.

Now he lives in a gracious four-bedroom home in Springfield. He has two roommates, both former Jacksonville residents, but he has his own room.

He clearly loves his new home. He has control over the money he makes at a part time job picking up trash and has used that money to fill his bedroom with electronics - two stereos, a TV and a karaoke machine.

Fleming and his roommates get along famously, they smoke cigars on the porch and help cook delicious dinners.

Their services are provided by the Individual Advocacy Group, which manages the property and provides workers. But the lease is in Fleming and his roommates’ names. This is their home.

The people from IAG who work with Fleming say he has flourished since the move from Jacksonville, and they paint a grim picture of the services or lack of them he got from the state-run institution. Fleming, they say, is a testament to the benefits of community living.

One of the bedrooms in Fleming’s house is an office. But when they first moved in, in 2012, there was a fourth roommate. Early on he and Fleming got in a fight over the TV. It got smashed and the cops were called. That fourth roommate was taken away by police and moved somewhere else.

That sort of volatility - and response - is what terrifies Murray parents like Judy Groner. They say that kind of police contact is traumatic, and what if, they fret, the police who come don’t know how to deal with a person with developmental disabilities and hurt their loved ones?

The state only requires one worker in each four-person group home at one time, although IAG leaders say they usually have at least two workers.

Judy Groner says there is no way one or two workers could safely help Kathryn if she started having a meltdown. Especially if they were also responsible for three other people at the same time.

“I always kid, I say she’s like the incredible hulk and it takes five people to try and hold her, she’s that strong and powerful,” Groner says. “The community just isn’t set up for someone like her yet. And I just feel so bad because I want her to be able to leave Murray someday but it has to be on her terms, when she’s ready.”

But many researchers say the evidence doesn’t support this fear. Instead, they say people with the highest needs, people like Kathryn, are the ones who benefit the most from a move to the community.

‘Down here he just doesn’t seem to care about that’

Beyond the struggle over care, the fight to keep Murray open is political and geographical.

The fight over Murray pits those of us upstate against everyone down there - at least that’s how the people in Southern Illinois see it.

And it has a lot of Democrats and Republicans reversing their typical battle lines.

The strongest political ally of the Murray center is State Rep. Charlie Meier, 108th.

He’s a farmer by birth, and a small government Republican.

And yet he’s dedicated his life to keeping this big, government run institution open.

Then there’s the governor. A Democrat elected with the support of unions. And here he is pushing to eliminate 550 union jobs.

Paulauski of the ARC sees that as a sign of Quinn’s political bravery.

“Here you have a Democratic governor, strong support from these state unions. And then on the other side you have Republicans all of a sudden saying we need to keep these facilities open. This is where waste is in the Illinois disability system,” he says.

But Meier says it’s not about politics, it’s about geography.

“Centralia, most of it sits in Marion county and that is typically one of the five highest unemployment areas in the state. Those 541 jobs are the equivalent of 80- to 100,000 jobs in Chicago. Can you imagine if he tried to eliminate 80,000 jobs in the Chicago area? But down here he just doesn’t seem to care about that,” Meier says.

One thing people on both sides of the Murray fight agree on is that state government is there to help its most vulnerable citizens.

It may be the only thing they agree on.

Patrick Smith is a WBEZ producer/reporter.

http://www.wbez.org/news/battle-over-state-facility-personal-political-110925

###

Ability Chicago is a supporter of people with disabilities being able to live in communities, and  support Mr  Paulauski and the many individuals and organizations that have worked tirelessly on behalf of people with disabilities ability to live, work, and be part of communities in Illinois.