Jonathan’s Story
Thursday, May 19, 2005 (10:59:08)

Posted by Sylvia

Autism & Residential Care - A parent’s journal

Illinois is sadly lacking in quality residential services for autistic adolescents. In 1992, Illinois was ranked as one of the lowest states in the country for providing residential services for autistic children. Presently, Illinois ranking has continued to drop until it is now ranked between 47th and 49th making Illinois one of the worst states to live in for families dealing with autism. According to the updated 2002 study - Shame on Illinois, Courtesy of Brian Rubin J.D. of www.Brianrubin.com.
http://www.brianrubin.com/sys-tmpl/shameonillinois/

Parents of autistic children typically spend hours educating themselves on autism, so they can understand what’s happening with their child and what to expect in the future. In order to face the challenges they meet within the maze that is their state’s legislative system, parents often become skilled negotiators and lobbyists to get the best possible care for their children.

Once a care facility has been found and a child placed, a parent’s involvement must continue. Not all facilities provide appropriate care. Children are often neglected by the facility caretakers. They are fed improperly or infrequently, personal hygiene is ignored for those who cannot take care of themselves, education opportunities are limited and physical abuse occurs.

Involved parents demand proper care, good food, clean clothes, education and the myriad of simple day-to-day activities many people take for granted. For their efforts they are often labeled “hysterical” or meddling. Once a parent is labeled, that seems to provide an excuse for the facility to ignore whatever the parent requests or brings to the administration’s attention.

This is a wonderful method many institutions have developed for sweeping their staffing problems under the carpet and continuing with status quo care. Their residents continue to suffer – those who are autistic as well as those with other developmental disabilities. Parents and family members continue to work within the system to get problems and issues at the facilities resolved, normally without success. State Operated Facilities continue to ignore the parents, who have been labeled as hysterical and meddling anyway, so why listen to them? And the residents continue to suffer. They have no voice to speak out for themselves. Who will speak for them? When will this cycle end? When will Illinois legislators and facility administrators begin providing quality care for our autistic and developmentally disabled citizens?

This is a condensed version of Jon’s story; a journey documented by his “hysterical” mother, an informed and involved parent.

20 months
Our son Jon was diagnosed with a severe communication disorder at 20 months. We went to speech therapists, psychiatrists for special testing and several developmental pediatricians. We searched for quality programming led by professionals who could help Jon learn to communicate. We knew if he didn’t learn use some method of communication, he would soon become frustrated. His quality of life is and always will be our top priority.

Age 4
A local facility provided education, speech therapy and residential care for approximately 1 year. Their speech therapist and educators were outstanding. Although I never understood why Jon was only allowed to stay in their residential treatment program for 1 year, I accepted their regulations without question and took Jon back home after 1 year of structured care.

He was admitted to a local public school, but we soon realized it just wasn't possible for Jon to get the care he needed in a classroom. During this time in public school, we met some wonderful, qualified teachers who cried along with us when we all realized this option just wasn’t working. Jon left public school.

After several years of living at home with me and growing into a good-sized boy, still requiring constant care day and night, it became evident I couldn’t handle his full-time care much longer, even with occasional outside assistance. Jon became violent and more difficult to control as his and my frustrations grew. An alternative living arrangement was needed.

Age 7
Jon needed 24 hour residential care with an educational component, a service Illinois did not provide. The only available opening was in Peoria, and that residence would be provided only for a year. After that we would be back to square one – in need of residential / educational programming. It just didn't seem right to place him for a year, have him get accustomed to a new environment then start all over again with a new facility in a year. The search for a good care facility continued.

Age 8
Jon’s now in extreme need of a structured program. He could no longer be handled in a home environment and needed quality round the clock care.

After months of research, looking throughout the United States, a facility in Wisconsin was presented to us as an option by a local caseworker. This facility was the only residential facility (within driving distance) that would accept Jon.

I lobbied for funding for out of state placement in 1993 during the budget cuts and got the funding we needed for out of state placement.

Once Jon was placed in Wisconsin, our involvement with his care continued. I called him nightly to make certain he was doing all right. His father and I drove 12 hours round trip weekly to visit him on weekends and for special school events. We also had the expense of a 2nd residence we used for visiting on weekends to provide a loving home environment.

Age 18
Jon lost his placement in Wisconsin suddenly and was temporarily sent to a psychiatric ward, the only readily available placement for him. We were familiar with the psychiatric ward’s treating psychiatrist, because he had treated Jon at the Wisconsin facility where Jon lived for 10 years. Dr. G was stumped and didn't know what to do. He knew if he released Jon from the hospital, Jon would be placed in a mental health institution, and future residential facility placement would then be difficult. Dr. G suggested that we cross the border to Minnesota, so Jon could become a resident there and be provided for by that state.

Jon was released from the psychiatric ward and transported to a mental health facility in shackles, due to some administrative paperwork not being complete. The mental hospital in Wisconsin was not appropriate, even for 1 day. Jon was placed on hold while we waited for an appropriate residential opening in Illinois. That made me extremely nervous.

Facility administrators told us several times to move forward and get on with our lives. They didn't understand visiting parents. I used to lie near Jon in the small quarters they prepared for him while he slept on the 1-inch thick mat the institution provided as his bed.

I knew I had to do something, because if I didn't he would remain at this facility, all but forgotten by the state. Because of some required guardianship paper delays Wisconsin required, we had no input on the drugs Jon was receiving. The facility controlled their patients with drug-induced stupors. No education or quality of life was provided, and Jon began sliding into almost 24-hour sleep patterns.

I began an email, letter and phone call campaign to Springfield to get Jon transferred back to an Illinois residential facility. Although it took 2 months of lobbying at the Department of Human Services in Springfield, Jon was finally transferred to a state facility in Illinois. This was my first experience with a state facility. Unfortunately this facility provided inappropriate programming, so another Illinois facility was needed. Another campaign to move Jon to appropriate facility began.

A second Illinois facility came forward and seemed excited about taking Jon. Jon was placed there and lasted for 2 weeks. The administrators at this for-profit facility didn’t read Jon’s file thoroughly enough, prior to his admission, to realize this new facility didn’t specialize in autism, they just wanted the funding and a resident to fill a slot. Their response when they finally realized this was to have Jon removed to a local hospital, which didn’t want him. The hospital psychologist called every hour to ask me if anything had been resolved. Where would Jon go? There seemed to be immediate options – residential placement is not a speedy process. We followed the instructions of the hospital psychologist and he told us to go to a nearby hotel. If we took Jon home, we would lose placement and have to start over. The phone rang every hour until approximately 5am and finally a joint agreement was made to transfer Jon back to the State Operated Facility we started out with.

Age 19
Jon was transferred back to the Illinois state facility he was in a year ago and was placed in a different unit. Unfortunately this still was not appropriate placement.

Age 21
Jon is currently in a state operated facility, which is not an appropriate placement for him for optimum long-term care. Tooth brushing, grooming, wearing the same clothes 2 and 3 days in a row and constant staff ratio changes combined with violent challenging residents make the environment less than positive. We have noticed the direct staff definitely have their challenges and a tough job but there are only a select few direct staff that interact with residents. 90% of them do not understand autism, so they often neglect the residents and their needs. Jon often falls asleep due to lack of activity and interaction, unless parents are visiting.

Fortunately Jon has the opportunity to attend a day school off the facility campus. However, because of Jon’s current age, school will end for him in early June 2005, and he will be placed in the state facility workshop day program. This program does not provide the education he needs, so unless he can get into another off-site program for the summer, he will once again be faced with losing much of what he’s learned and living without constant educational stimulation. He has progressed well with the school programming (separate from the state), so we are concerned about the state workshop.

Jon’s Story is far from over. His journey through residential care will continue for the rest of his life. What will happen to Jon when his parents are no longer around to make certain he’s not dumped somewhere and neglected? This is a constant worry for all parents of developmentally disabled children. What can be done to alleviate this concern, particularly when you’re living in one of the least caring states in the Union – Illinois.

Our legislatures need to wake up and reframe their priorities, so our autistic and other developmentally disabled citizens are well taken care of.

• Illinois has lengthy waiting lists for quality residential programming.

• Occasionally there is ‘hearsay’ about a new group home or facility opening and it never occurs.

• Quality residential care doesn’t exist in Illinois and if it does, there is never an opening or the CILA provider doesn’t specialize in autistic residents.

• Caseworkers rarely have answers or call parents back in a timely fashion.


‘SO MANY TIMES, I WANTED TO PACK THE CAR AND MOVE TO A STATE THAT PROVIDED EXCELLENT SERVICES’.

• After losing Jon’s placement 10-year placement in Wisconsin, I dreaded searching for a quality facility in Illinois.

• I wanted to move out of state but I needed to respect Jon’s father’s wishes. His father wants him close to home and within driving distance for weekend visits.


MY DREAM
I often look through magazines and read about a celebrity’s autistic child. I know that child is well taken care of because the celebrity has the money to provide the best care and staff that money can buy.

I wish I could build wonderful facilities and group homes everywhere for our special autistic loved ones in need of quality residential care, regardless of their age. It would be wonderful to provide a welcoming environment, a sensory room with colored lights, fun things to do, enjoyable chores, good food, education, behavior specialists, progressive behavior programming, direct care staff who understand autism and care about their chosen profession, and so much more . . .


Contact the author: Illinois_story@yahoo.com