McHenry County Blog

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.

When I was the Republican Spokesman on the Illinois House Appropriations Committee that handled the budget for the Department of Mental Health and Developmental Disabilities, one of my goals was to get at least 50% of the money into community services.

Think about it.

If you needed supervision, would you rather live in an institution or a home near your family or even at home?

I think the answer is obvious.

It was not until Governor George Ryan appointed Barrington’s Ann Patla director that I got cooperation from the Executive Branch. Patla headed up Pioneer Center before becoming agency head.

One year when I asked my annual question of the budget percentage going to non-institutional care, Patla told me it was over 50%.

Not much over 50%, but more than half.

Now, the folks Governor Pat Quinn appointed to look at cost cutting agree:

“We believe that every individual with developmental disabilities should be given a meaningful choice to live and remain in his or her community,” is in that part of their report, which is below.

From the June report from the Illinois Tax Review Board, I’m assuming that putting too much money into the expensive institutional part of the care still exists.

Indeed, one of Rod Blagojevich’s key campaign pitches was to keep open or to open institutions like Lincoln Developmental Center whose costs clearly outweighed their benefits. He went from facility to facility holding rallies set up by AFSCME. I ran into one in Canton while campaigning against him for governor on the Libertarian Party ticket in 2002.

Let’s take a look at page 37 and 38 and see what the folks given the task of suggesting budget cuts came up with:

Enhance community options for people with developmental disabilities that are living in State or privately-run institutions:

The Division of Developmental Disabilities (DDD) provides services to adults with developmental disabilities who are living in their homes and communities, or in institutional settings.

Currently, there are 2,385 individuals served in nine State-Operated Developmental Centers (SODCs), which provide residential and program services to those with developmental disabilities needing active treatment programs and intensive supervision.

One of the SODCs, the Howe Development Center, is a de-certified facility, serving approximately 289 adults at an average annual cost per beneficiary of $186,573.

The average cost per individual of the remaining SODCs is $142,533.

In addition, there are over 300 private intermediate care facilities for persons with disabilities (ICF/DD) that are currently serving 5,648 adults at an average annual cost per beneficiary of $57,428.

Both SODCs and private ICF/DDs are certified and operate under the same federal regulations.

There is also a network of Community Integrated Living Arrangements (CILA), in which approximately 200 community-based organizations provide services to 7,240 people with disabilities on a 24-hour basis, at an average annual cost of $53,291. Services provided by these centers include advocacy, peer counseling, skills training, information and referral.

Finally, there are 3,055 people with disabilities that currently receive home-based services at an annual individual cost of $19,852.

All other individuals with disabilities are being served on a Average Annual Per Person Cost Waiver program, in which they receive day services at an average cost of approximately $12,000 per year. (12)

Illinois relies disproportionately on high-cost institutional settings rather than less costly community settings or shared living environments to serve the needs of these individuals.

According to recent state comparisons, (13) Illinois ranks at the very bottom – 51st – out of all states, including the District of Columbia, in serving adults with disabilities in settings of six persons or less.

We believe that every individual with developmental disabilities should be given a meaningful choice to live and remain in his or her community.

Many of the beneficiaries who are currently being served in high-cost institutions in Illinois could be served in the community with quality services at a much lower price.

States such as New Hampshire, Maine, Florida, Oregon, and Wisconsin have developed shared living environments that serve individuals in an independent foster care-like setting.

In 2006, 70.5% of all persons nationwide were supported in living arrangements for six or fewer people – Illinois can take advantage of these best practices to make successful community transitions.

The State should immediately begin pursuing aggressive strategies to reduce the number of individuals with developmental disabilities in institutional care, including:

• Exploring the potential closure of some of Illinois’ State-Operated Developmental Centers (SODCs).
• Pursuing the immediate closure of Howe Developmental Center. The Department of Human Services has recommended to the TAB the closure of this facility, and the TAB supports this department’s recommendation. The decision was based on a number of factors:
  1. concerns from the U.S. Department of Justice,
  2. the need to ensure quality of care for all residents, the decertification of the facility under the federal Medicaid program,
  3. the facility’s inability to regain certification, and
  4. the continued loss of over $2 million of federal matching funds per month.
• Investing some of the savings from closing these facilities in enhancing the capacity and services available in the community.

= = = = =

(12) It should be noted that the CILA, home-based services and private ICF/DD annual costs reflected above do not include pharmacy or other medical services funded through the Medicaid State Plan. The ICF/DD and CILA costs do include some nursing services provided at the residential settings.

Nevertheless, the large disparity in costs associated with private and community services versus those delivered by the State, even after taking into consideration additional Medicaid medical services, clearly supports the TAB strategy addressed below.

(13) “The State of the States in Developmental Disabilities: 2008,” Washington, DE. American Association Intellectual and Developmental Disabilities. Braddock, D., Hemp, R. and Rizzolo, M.C. (2008)