Illinois’ Lack of Care for Developmentally Disabled Adults Horrible

Bill Choslovsky

Yesterday, I published a column by attorney William Choslovsky about the Algonquin mom who, after researching how various states treated developmentally disabled adults, decided that Tennessee provided the best care.

She drove her 19-year old daughter, whom she was unable to continue caring for, there and abandoned her after she entered a bar to go to the bathroom.

Choslovsky pointed out that Illinois State officials finally did what a compassionate state should have done in the first place.

But only after they declared her in “crisis.” That is, her mother essentially had to manufacture a “crisis.”

When I was State Representative, how many times did I receive desperate phone calls from parents of adult children who were so, so worried about what would happen to their child after they died?

There were so few placements and such long waiting lines that a call from my legislative assistants, pretty much miracle workers in manipulating the state bureaucracy, was sometimes insufficient to get a placement.  (Their casework was so good that people from throughout McHenry County called and came for help on all sorts of subjects.)

Even when I called, I couldn’t always succeed, despite the fact I was on the Appropriations Committee that handled the relevant department’s budget.

A call from a legislator or his/her office sometimes created the “crisis” that Choslovsky pointed out Eva Cameron created by her trip to Tennessee. (I wonder if Eva Cameron contacted her State Rep. and Senator before implementing her Tennessee strategy.)

Illinois officials just got embarrassed enough by all the negative publicity to do what they should have done in the first place.

There was a public relations “crisis.”

Now consider there are 10-20,000 DD adults living with their parents in Illinois.

That is one huge number of families of which Algonquin’s Eva Cameron was just one.

Choslovsky educated me on the scope of the problem.

First, there are about 2,000 DD residents.

They each cost the state about $150,000 a year.

There are 6,000 DD adults living in what are called Intermediate Care Facilities. These are places that house over 8 clients.

Next, another 9,000 DD residents – usually a bit higher functioning – live in “Community Integrated Living Arrangements” (CILAs), which are small homes or apartments “integrated” in the “community.” These “homes” have less than 8 residents and are the type of housing that advocacy groups push because they are not large “institutions.”

These CILA homes also cost the state about $50,000 per resident, basically the same as the ICF homes.

So, if you’re keeping score, that’s about 17,000 DD residents the state now pays for: 2000 at about $150,000 each and 15,000 at about $50,000 each.

If you stop there, at least one conclusion is self evident: if the state closed the eight remaining state institutions that cost $150,000 for each resident and moved them to ICFs or CILAs, there could be huge savings.

To his credit, Governor Pat Quinn has started to close some of the facilities, but ironically he faces opposition from the public unions – the very unions that helped him win his razor thin election in 2010.

The unions he made promises to he would not cut their jobs.

Pure politics.

And what could all the savings be used for: the fourth – and biggest – group:
the 10,000-20,000 families with DD kids who receive no services.

That’s right, in Illinois about 17,000 DD residents receive care while between 10,000 to 20,000 wait for any services.

From a cost-benefit basis, Choslovsky and pretty much anyone who can do such an analysis would conclude that getting people out of state DD institutions would free up money to provide similar services in the not-for-profit sector.

This is where AFCSME union officials start talking about how the employees will be hurt.

But, what is the purpose of government?

To provide jobs or services.

I would argue the latter.

And living in our communities are 10-20,000 families who getting no help at all.

McHenry County has more than it would otherwise because our mental health-DD property tax, passed by referendum, is a magnet to families seeking the services that Pioneer Center was formed to provide.

There’s $20 million that could be made available for Intermediate Care Facilities or Community Integrated Living Arrangements.

What kind of a society would not care for such individuals?

Well, folks, Illinois is such a society.


Illinois’ Lack of Care for Developmentally Disabled Adults Horrible — 7 Comments

  1. Thanks Cal – for bringing more of this awful situation to light.

    I wonder how many families have been forced to leave IL, to a state that helps with the disabled better than IL does.

    My sister and family moved to WI, to a much better environment to help her care for her disabled son.

    My brother in law continues to make the 90 minute daily commute to his job, but it’s worth it to get the benefits to help my 22 y.o. nephew.

  2. At least one of the purposes of an organized civil society is to protect those incapable of protecting themselves.

    In the case of those with special needs it is clear our culture is failing them.

    For whatever reason those without a voice of their own(unborn, special needs, dementia patients, abused/murdered children, rape victims, those with mental disorders, ….) are seen as political pawns when it serves but lack real support of the representatives we send to office to serve us.

    I could do with a whole lot less nanny state stealing my money to pay gold plated pensions and health benefits for people who haven’t a clue how to be a productive member of society and a whole lot more compassion for the helpless.

    This is certainly an issue I was happy to see Laura Bush take on, I’m happy Cal writes about it and I pray we can regain control of our government and its out of control pandering to illegal aliens, public unions and multinational corporations alike to allow the most in need an opportunity to be protected at least as well as a Spotted Owl or wetlands area.

  3. how does this happen in a nanny state?

    Maybe these people in need do not represent a voting block….

    These people dont get help….but we all know who the ones are that do get served in Illinois…

  4. It’s a national crisis.

    The more I look around and research, the worse the news becomes.

    Change and answers to the many problems plaguing this issue will come from people with no vested interest in it.

    Victims are such a small minority that no one really cares enough to act.

  5. I feel for parents in this situation, but our legislature needs to make wholesale changes in how they do business.

    Too much corruption and ineptitude for too long has eroded our State’s ability to provide such basic, civil social services to those who legitimately need them.

    How do we rebalance the scales?

    By taking note of our electorate and voting out those who have a history of pandering to their own needs ahead of us.

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