25th Anniversary of the Lawsuit, Part 2

After we won the lawsuit and the judge ordered the State to provide services in the community, we were too exhausted to actually celebrate.  But it was exciting to participate in setting up a whole new system for services in the community and to see our kids begin to have real lives.  All the experts from other states that had worked with the court led us to believe that our kids were about to live in paradise. 
It turns out it was one heck of a lot better than the institution, but there were a ton of problems. 

Here are some examples of what we gained by going through all that hell -

My son has a part time job and this year for the first time, he actually is paying for most of his living expenses even though he doesn't make even minimum wage.  He works at a recycling place and sorts cans, plastic and paper.  He definitely gets enough to eat - he gained 30 pounds in the first two months after he moved into the community; he's now a normal weight for his height.  Within a year his IQ went up 20 points.  He can read and write a little.  He gets to go to movies, dances and other social events with friends.  He has learned to play the keyboard and drums.  He takes swimming lessons.  He goes to church every Sunday and will tell you that he knows God loves him.  Every year he goes on an inexpensive vacation with his roommate and a staff person.  This year they went to St. Louis for a few days.  He lives in a regular house with a roommate.  His roommate and he are friends and have lived together since they moved into the house in 1991.  I can truly say he is a happy man.

My daughter's life has been a little more difficult due to her seizure disorder and side effects from seizure medication.  However, her health is 100 times better than it used to be.  She has lost the frown that used to be her perpetual look.  She too has had swimming lessons  She loves to be outside as she always has, and anytime she wants to she can go out the door of the house she lives in with the roommate she's had almost since she moved into the community to the back yard instead of being locked in a dark room with 24 other women.  She gets to go to the park, for walks in the neighborhood, the zoo and the aquarium.  This year she started taking horseback riding lessons which she absolutely loves.  I can truly say she has a very good life and enjoys it.

Another good thing about these good lives is that the cost of providing them is WAY less than it was in the institution.  So much for limited resources - the cheapest thing is to provide good lives that include paid work for those who can work.


Because families could/can choose providers, we have been able to solve a lot of the problems.  But some problems followed us from the institution and have either been impossible to solve or incredibly difficult to solve.  Here are some examples:

1)  In the beginning there were over 50 service providers to choose from.  Everyone had a case manager and a program coordinator as well as therapists of various kinds if the person had a need.  After awhile we discovered that most of these folks had absolutely no training of any kind about disability or how to provide services.  They made tons of serious mistakes.  They made even more silly mistakes.  I discovered, for example, that most of the women caregivers that worked in my daughter's house had absolutely no idea how to take her temperature to see if she had a fever.  They all thought that when they gave her a Tylenol when she had a fever and it went down, that she wasn't sick anymore and didn't need to go to the doctor. 

2)  Since there was no training, people just operated on what they thought up and on the prejudices they had about people with disabilities - like punishment is a good way to deal with difficult behavior, people with severe disabilities don't have emotions and can't experience physical pain.  Since they were the caregivers,  they should tell the person with disabilities what to do all the time and the person should obey.  Even later when the judge ordered that training be provided, most providers ignored what they learned because they experienced it as criticism for the way they had been providing care and refused to do anything different.

3)  A new system of services had to develop ways of doing business that some providers understood and some didn't.  One of the providers for my daughter did not know that they could be reimbursed for clothing, some medical expenses, adult diapers, etc .  They thought that her $500 a month disability had to pay for food, rent, clothing, etc. and that the State would only reimburse for the staff.  That ignorance led to my daughter and her roommate being without a lot of the necessities of life which in turn led to...guess what?  Yup - they said I was "unrealistic" in what I expected.  One of our lawyers backed them up!!  I talked to other parents and all of us worked on finding out what was wrong.  We studied the system of reimbursement and trained the service provider.  But there were a lot of hard feelings and I think that lawyer still thinks I was psychotically demanding.

4)  Medical doctors in the community were better than the ones at the institution.  But not many of them wanted our kids as patients.  So it took a long time to find good doctors that cared.  In the meantime health problems went unsolved.  For example, my daughter has a seizure disorder and every few years has a major seizure.  I guess a medical book somewhere says to give Dilantin so that's what they've always done.  Even though I told them that she can't take Dilantin, that it sedates her to the point where she can't walk, sit up, or eat and that it causes her to have many small seizures (what do I know, I'm just a parent), they give it to her anyway.  It has taken me as long as two years to find someone who will take her off it and by then she has lost massive amounts of weight, been in the hospital several times for aspiration pneumonia and has lost most of her muscle tone.  Finally, two years ago, we found a neurologist who understood.  She's still "rehabbing" from the last experience with Dilantin.

5)  One of the saddest things is the lack of programming.  Care staff just does what they want to do and blow off what they don't want to do.  The agencies don't do much about it because the job pays so little, it's very hard to find someone to hire.  So they settle for people who will generally show up for work and who don't abuse the people they're caring for.  If a staff member does get fired, he or she can easily get a job with another agency.  So, my daughter has been living in the community since 1991 but still has no communication system even though a system has been set up for her many times and experts from out of state have consulted.  The staff just won't do it.  They don't believe its necessary and it's too much trouble.

6)  My son has autism and severe mental retardation.  He probably also has schizophrenia.  These disabilities cause him to react with great fear if he's yelled at.  This has caused him to get fired from two or three jobs because the staff working with him thought punishment - especially yelling - was how to get him to do his job better.  When he's afraid he screams and cries and tries to run away.  Not a good thing on the job.  Actually, he really wants to work and to do well at it.  If you patiently show him what you want him to do and keep reminding him, and keep praising him, he will learn and never ever forget.  He's a hard worker and very proud of doing a good job.

Here's what I think - the root cause of the problems is the prejudice against people with disabilities - especially people with severe disabilities.  I think we (people in general) should either just admit that we believe these people are worthless, aren't really human and would be better off dead so they don't cost money and trouble, or we should treat them as the human beings they are and help them have a decent life.  The way we operate now is we provide most of them with a miserable life - terrible medical care, abuse, poverty and boredom and so they die early - I guess making a lot of people happy.  To me that's just murder in a slow torturous form because we don't want to admit the truth of what we really believe.  I'm sticking to my belief that disability does not take away humanity and that everyone has value and that everyone needs love and care - no matter how "unrealistic and unreasonable" that may seem to some.