By RITA WINKELER
This is in response to Arc of Illinois Executive Director Tony Paulauski's May 26 article in The News-Gazette. As a guardian of a developmentally disabled brother in a community-based CILA (community-integrated living arrangement) and a son who lives at Murray Center, I personally know both sides of this issue. Anyone with any reasonable knowledge of the developmentally disabled community understands that one size does not fit all.
Would you let your 6-year-old child be picked up from day care, take a three-hour drive with a stranger, and then live with strangers never to return to your home? Of course not, but this is what is happening to some of the disabled residents at Murray Center in Centralia, who function at the cognitive level of a 6-year-old or less. As part of the governor's plan to close Murray (a state-operated developmental center), residents are being moved without pre-visits to live in homes they have never seen. This is part of his so-called "person centered plan."
Home to over 250 residents, Murray Center provides services for the most fragile individuals. One of these, Patrick, moved from a community facility in 1991 unable to use any body part except his head. Since living at Murray Center, his life has opened up. Under the consistent, intense therapy he has received, he is now able to use an augmentative communication device and has learned to read and form original sentences conveying his wants/needs, thoughts and opinions. When learning the news of Murray Center's proposed closure, using his communication device he said, "It feels like '91 again."
Many residents, such as Mandy, require repositioning every two hours to keep the lungs clear, to prevent bed sores and to prevent reflux problems. These residents need a consistent, caring staff to monitor them. As many of these residents are unable to express their needs verbally, staff's ability to understand their nonverbal nuances keep them safe and well cared for.
Donna is an example of one of the many residents whose lifespan has been lengthened due to the care she receives. Through a medical study on Rett syndrome, Donna has been documented as the second-oldest Rett syndrome woman in the United States. The average life expectancy of those with Rett syndrome is in the 40s — Donna is 54!
Darryl is someone whose life was actually saved by his move to Murray Center after three community placements — one where his teeth were knocked out, another where he was drugged to a comatose state, and lastly where he was sat upon by staff and was blue when the EMTs came to revive him. At Murray, Darryl has thrived. With their reduced reliance on psychotropic, powerful drugs that have debilitating side effects, and the rehabilitative/therapeutic care from behavioral analysts, psychologists, pharmacists, nurses, doctors and consistent, mature staff, Darryl now is happy, smiling and able to enjoy his home with his Murray family that enables him to participate in movies, eating out and being a part of society, not hidden away in the community drooling on a couch.
The Murray professional team is trained to rehabilitate, not just maintain the status quo. Using the talents of professionals, residents receive the services they need weekly or daily — not 25 hours a year as they would in the community.
Alan is another resident who calls Murray home. He came to Murray with a tracheotomy tube, and using hand motions indicated to staff that his greatest desire was to get this tube removed. His individualized support team set out to make this dream a reality. The speech therapist worked to increase respiratory strength, nurses constantly watched his oxygen levels, and doctors worked to prevent the infections that were preventing him from enjoying life. His goal of having the trach tube removed was recently achieved. Alan now goes to work every day and has moved out of the medically fragile cottage to a cottage where he is able to enjoy sports and be "one of the guys." None of this would have been possible without the structured, consistent medical care provided at Murray.
The residents of Murray Center have the legal right to the least restrictive environment where they can receive the highly professional consistent care they deserve, and this is Murray Center. The closing of Murray Center is morally wrong. As seen through other state-operated developmental center closures, people will die. As one parent said, "Jeffery and the other 259 human beings at Murray do not deserve to be thrown out of their home. They deserve better."