State-operated facilities sometimes the only answer

State-operated facilities sometimes the only answer

By Sandi Kubbs

Working for 20 years as board member and president of Champaign County Advocacy and Mentoring Resources, the group that founded and operated the first local group home for developmentally disabled individuals in this area, my husband found Arc a valuable ally in assisting in the movement of clients of CCAMR in or out of the group's residence.

Arc and CCAMR always followed the precept that individuals with developmental disabilities must be assisted to live in the least-restrictive environment available. If independence training made it possible, group home clients would move to apartment living, for example. Arc campaigned for this and helped it come to pass.

The article of May 26 by Arc of Illinois executive director Tony Paulauski shows Arc's commitment and efforts in this — he visited Murray Center, he spoke with residents, he assisted in moving clients from the Jacksonville Center to community settings.

But there is another side to this story. I am simply going to tell our daughter's experiences as she navigated intermediate care facilities for the developmentally disabled (ICFDD), a group home, then finally arrived at Murray Center, a state facility for developmentally disabled individuals.

Ana is seriously developmentally disabled. At 33 years old, her functional age is about 2 or 3. She also has limited language and social skills, with a diagnosis of autism. Also she has sleep disorders and seizure disorder.

When she turned 18, she needed more services than we could provide at home, so we placed her in an ICFDD run by loving, sensible, capable folks who had a good reputation and extremely good intentions.

Ana ran into difficulties because her sleep disorders kept her from fitting into the ICFDD's schedule: If she had poor sleep on a given night she still needed to get up with the rest of the clients in the morning to attend the off-site day program. The ICFDD was not staffed for residents to stay home on a random basis so sleep or no, she was showered and breakfasted after a fashion and sent on her way. Behavior difficulties and increased seizure activity were the result. New medications were tried, and as often happens with folks with challenged nervous systems, side effects and poor results prevailed.

Ana was too difficult for this good facility and had to move on.

Exit ICFDD 1 and enter ICFDD 2. These folks knew the problems Ana had at ICFDD 1 and tweaked her schedule to accommodate her sleep needs.

Again, these were sincere, qualified, well-meaning, caring staff. By now Ana had medication problems, plus sleep disorder, autism, etc. This facility had more physically challenged and fragile clients.

Ana had aggressive outbursts, then a near-fatal medication reaction that left her unable to walk or feed herself and although ICFDD did not cause these problems, the facility could not handle them. They suggested that Ana be placed in a group home where there would be fewer fragile residents whom she might endanger and more high-functioning folks she could be friends with. Exit ICFDD 2.

Stop and consider for a moment if you were in Ana's shoes how you would feel.

You have inconvenient but genuine needs, are sensitive to noise and light, and want to have something interesting to do and people around who enjoy and appreciate you for who you are. She was less and less happy. She knew she was a problem wherever she went as she tried, maybe badly, to express needs and frustrations.

It was heartbreaking to have our child fail to adjust wherever she went.

It was an endless loop of middle-of-the-night calls and apologetic administrators who simply could not deal with her as she was. But this was how she was. Medications did not make her easy to deal with. Paradoxically, they often made her worse. We felt there was no answer and since I could no longer care for her at home (I have a physical disability) taking her back home was not an option.

Trapped and sad and discouraged and desperate, we hesitantly complied when the administrators of her three facilities (these were caring folks who wanted the best for Ana and had followed her lack of progress) asked us to get in touch with Murray Center, a dreaded state facility.

A meeting was set up with her past caretakers and Murray staff: a psychologist, a pharmacist, a social worker, an occupational therapist, a speech therapist, a physical therapist, QMRPs, RNs and others too numerous to mention.

What a shocking experience. After years of refusing to even consider a state-operated facility (remember the documentary "Snake Pit" about a state-operated center in the 1930s? This was our expectation of Murray Center — feces-covered wretches languishing naked in a bare room) we were face to face with our worst fears: a state-operated facility being involved in evaluating OUR DAUGHTER.

But wait — they understood how a sleep disorder could wreck behavior the next day. They knew that post-seizure days would require special care. They comprehended and accepted that aggression was how frustrated and unable-to- communicate individuals reacted. They had wisdom and experience along with the loving care and concern of the ICFDDs and the group home.

They could handle Ana. Her meds were decreased or eliminated. Her seizures decreased about 1,000 percent. Her outlook on life improved, and her aggression, never gone, diminished. Ana had a home where her difficult and unpopular needs were met. Ana was home. What a joy to see our daughter in a place that could cope with her worst days without missing a beat. And this enabled her to have many more great days.

Now these state-operated facilities are seen as inadequate because some — certainly NOT all — residents never progress to a less-restrictive community environment, because the facilities are what they are, state-operated. This is a buzz word for inadequate, antiquated warehouses for our most vulnerable citizens. Nothing could be farther from the truth.

I appreciate the efforts of Arc of Illinois and other groups to improve living conditions for folks who really cannot look out for themselves. It is a generous and compassionate and reasonable thing to do. But in doing so, everyone must make sure that the folks whose needs are best met in state centers like Murray Center are not forgotten.

Hey, Centralia is a community, and these Murray Center clients are involved in the activities of the community — just as folks in group homes and ICFDDs across the state are.

These folks are not languishing in a bare room staring at a flickering TV screen — at least not any more than most Illinois citizens.

Closing state-operated facilities sounds like a worthy aim. And it is on the agenda of many progressive-thinking groups. But it is not best for many of the clients, like Ana.

Sandi Kubbs lives in Champaign. Her daughter, Ana, has been a resident of Murray Center in Centralia for 14 years. Sandi and Alan, her husband, have been active in Murray Parents Organization for 12 years.

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