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Brown: Budget fiasco threatens to shatter happiness of man with fragile X syndrome

Adam Rubenstein, formerly of Hoffman Estates, is one of five developmentally disabled individuals facing expulsion from their Wisconsin group homes because the state of Illinois has not paid its bills. Rubenstein is pictured at center with family.

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I told you Tuesday about Keith Drazner, a 38-year-old autistic man from Highland Park facing removal from the Wisconsin group home where he has lived the past 20 years.

Now meet his neighbor, Adam Rubenstein, 44, who suffers from fragile X syndrome, an inherited intellectual disability.

Adam was raised in Hoffman Estates and now lives just down the street from Keith in Onalaska, Wis.

Both men have spent their entire adult lives in facilities operated by Chrishaven, a small La Crosse-area non-profit agency that provides residential care for disabled adults who are unable to fend for themselves.

And both men are now facing expulsion because the state of Illinois, which originally agreed to send them there, has stopped paying the bills for their care due to the budget standoff in Springfield.

It’s a shameful situation. These are among the most needy members of our society, individuals to whom our responsibility is clear. Politics should not be allowed to create another barrier in their difficult lives.

OPINION

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At the time they were placed at Chrishaven, this state had no adequate facility to care for Keith or Adam, and bringing them back now would not save money.

For both men and for their families, Chrishaven has been a godsend.

“He’s happy there, which we never thought was going to happen,” a weary Carol Rubenstein told me Tuesday in between a round of phone calls seeking help.

What she meant was that she and her husband never thought their son would have a chance to grow up and live anything resembling a normal life, let alone have the opportunity to be happy.

That, of course, is the goal of all parents, but it can seem out of reach for parents of children with severe disabilities.

When Adam was young, the Rubensteins were told he suffered from autism, a diagnosis that covers a wide spectrum of behaviors.

When Adam was 21, his parents arranged for him to live in Little City, where he bit a staff member, requiring him to get a blood test. In the process, they discovered he had fragile X.

Adam’s intellectual development is stunted. He has the cognitive abilities of a child. But he can communicate.

“He has a lot of words, and he can let us know what he wants with words,” she said. “He can read a lot of words, but he can’t read.”

Adam can also feed, bathe and dress himself. He’s even a bit of a neat freak, his mother reports.

“He likes things where they’re supposed to be and when they’re supposed to be and how they’re supposed to be,” Carol Rubenstein said.

For that reason, Adam comes home for visits. He can’t stand for his family to visit him in Wisconsin “because that’s not where we belong,” mom said.

“His favorite thing in the world is to go to hotels,” she said. “Last time we had him in New York, he was hailing cabs, not when we wanted one, but…”

Adam lasted only 10 days at Little City.

The Rubensteins were desperate. They could no longer care for him on their own, and just as important, they believed it would be best for him to leave home if he were ever to achieve some level of independence.

At that time in Illinois, there were few small group home options, even less so for individuals with behavioral problems such as Adam.

Then they discovered Chrishaven. That was 1993. He’s been there ever since.

“They have done wonders,” Carol Rubenstein said.

Now that’s under threat. The Illinois Department of Human Services, which is responsible for paying the bills, has failed to explain the situation to me.

But I assume that without a state budget, the Rauner administration is taking the position it has no legal authorization to continue paying for their care.

Three other individuals from Illinois who reside at Chrishaven are also facing a March 31 deadline to move.

The Rubensteins and Drazners have kept the news from their sons for fear it will create anxiety that could lead to setbacks.

“Adam is not aggressive at all any more,” his mother said. “The thought of going back to all that is terrifying.”

“It’s such a relief when you have a child like this to know that they are somewhere they’re happy, that they’re leading a life,” she said.

There is no excuse for disrupting that happiness.

Tweets by @MarkBrownCST

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