William French, A live's battle for and finding Independent Living enabling him to spend the last five months of his life in dignity

The following information was shared by friend's of William French (passed Oct 6th, 2010; age 45), who's live was a journey for Independent Living.

Will’s fight: A six minute video on Will’s battle for independence with Ray Graham

YouTube Published on Jul 28, 2012 by Gtarswordman533
Music: "Chimes Of Freedom" Bruce Springsteen

Will had a roommate, another Ray Graham “client” with mild developmental disabilities. I’ll call him “Mike”. Mike was 68 years old to Will’s 44. Mike’s was a sad story, a man who did quite well as long as he was living at home with his family, but after the death of his parents – well, things rapidly went downhill. A well-meaning friend intervened and got him into the Ray Graham Association. The hope was they would help him learn necessary life skills to live as independently as possible.

Eventually, another friend helped Mike purchase a small condominium, assisted by donations from the community and a government purchase incentive for people with disabilities. Will moved in to help with costs – and to help pick up the slack, because Ray Graham did not provide anywhere near the support or training Mike required. Mike couldn’t manage his medications, couldn’t cook, couldn’t clean his condo, couldn’t manage simple bills. Since both Will and Mike were in the “intermittent support program”, a program that Ray Graham found less than lucrative in terms of reimbursement from the state, minimal resources were committed. It offered a large degree of independence and choice, which appealed to both Mike and Will, but in exchange for this, provided extremely poor “support”. The direct support provider was supposed to show up regularly and offer a certain number of hours per week. That was the theory. This was documented (for the purposes of reimbursement by the state) on monthly service log sheets, or as Will called them, “Papers of Lies”.

I lived with Mike and Will for over three months when Will completed two rounds of biochemotherapy and needed intense medical and emotional support. I saw what went on first hand. Will’s sister was also present for weeks at a time, and will verify that the Ray Graham employee responsible for Mike’s support did not provide the hours of care that were signed off on those “Papers of Lies”. (when Will was still with Ray Graham, he’d sometimes crumple them up – garbage, in his view – before initialing them, as he was required to do). Sometimes Mike ran out of his medications. Sometimes he ran out of food. Sometimes the condo was uncleaned – for Will, who had previously done all the cooking and cleaning for both of them, was no longer physically able to do so. All of these issues were supposed to be dealt with properly by Ray Graham – according to their Papers of Lies – er, the monthly summary sheets. I arranged for Mike to have a free 911 cell phone, a free emergency alert beeper, and finally, a twice a week cleaning service. Ray Graham just kept collecting the government checks.

One day, before Will was completely disabled by his illness but long after he had gotten very ill, the direct support provider demanded he cook spaghetti for Mike, who had recently injured his arm. For Will, this was the last straw; he long knew he was being exploited but had other battles to fight. But now he had few fighting resources left. He called me, shouting in anger and frustration. “Don’t they understand? I have cancer. Mike’s arm will heal, it will get better. This cancer WILL NOT!” And for the first time since his diagnosis, he broke down completely.

Will was useful to Ray Graham in many ways; he was a source of income as well as an unpaid assistant to Mike, filling in the many gaps left by their inadequate program. Sadly, the usefulness was not reciprocal.

Will had – astutely – identified two things he knew he needed to get a true grasp on the independence that he valued above all else. He needed to be able to use public transportation, freeing him from relying on others for rides, which he found infantalizing. And he needed to improve his reading skills. Will *could* read. But he could not read well, and it was a deficit that had never been properly addressed. Ray Graham, he believed, would help him with this. They had made promises.

But the “help” he received was a suggestion that he contact “Literacy Volunteers”, a group of dedicated and earnest folk who had absolutely no training in working with people who’s reading deficits were due to a disability. The volunteers tried, and Will tried – I found countless notebooks filled with his practice session notes – but little progress was made. Finally, the literacy volunteer program told him they could not help him more. He was frustrated and upset; Ray Graham offered no options, what would he do? He practiced on his own as much as he could. He went to bookstores, purchased books, and worked, extremely hard, at reading. He read magazines, newspapers, anything at hand. He made some improvements. But after we met, I noticed something about Will – his eyes didn’t track all the way to the right. A former homeschooler, I worked with him on phonics and found he had no problems sounding out words – but when it came to reading sentences, he started off well and then lost the thread as he progressed to the right. “Neurological issue”, a family member of mine with medical training offered, and I made inquiries as to which specialists might be able to help. “Work on language therapy at the same time,” another advised me, “maybe with people who work with stroke patients.” And I made more inquiries and located people who felt sure they could help Will with these matters. He was filled with hope. He’d just learned how to use email for the first time and had begun practicing using the internet. He could see the world truly opening for him.

And then it was January 2010, and time for his medical scans, to see if the Interleukin 2 therapy he’d undergone was still keeping the melanoma at bay.

It wasn’t.

When Will was in high school in Tucson, he got a job as a dishwasher at the Sheraton El Conquistador. Usually given the most undesirable shifts, he was often chosen as “employee of the month”. He was determined to use the job to show that he could be dependable, handle responsibility, could succeed in a “regular” position. This, he believed, would help him with his ultimate goal, true independence.

Special education classes at Ampitheater High School were segregated almost entirely from the “general” school population, a situation Will loathed. The big “integration breakthrough” came when the special education students were allowed to eat in the cafeteria with the others. As usual, segregation increases, never decreases, alienation and bigotry and this proved true in this case. Will recalled sitting at a table with some of the other students and watching as they got up and left him there, alone.

One day, another student pushed him down in his haste to enter the cafeteria. The mainstream students were accustomed, apparently, to thinking of the special ed students as road obstacles and irritations as opposed to fellow human beings. Will fell – and broke his right elbow. But he was scheduled to work after school. And so he went to work – how, I cannot imagine. A manager noticed the blood and – mercifully – insisted Will call his father. Though the arm eventually healed, his elbow remained scarred and slightly crooked, which I observed during the first hospital stay that I accompanied him to. And that’s when he told me the story of how it happened. I was speechless. Why, I asked, stunned, did you go to work? How could you do that? It must have hurt terribly!

It did, he said. But “I didn’t want to be unreliable”. So he went to his dishwashing job, determined to tough out a fractured elbow.

That unfathomable determination, single minded focus, and raw courage never left him, not for a second. But he was clear: physical pain was far less tormenting than the pain of being marginalized, labeled, treated as a child of a lesser god.

Thank you to the Illinois General Assembly Human Services Committee, who allowed me to testify at today’s hearing on the abuse and neglect of people with disabilities. A special thank you to Chairman Greg Harris.

Will was told there was “no recourse and no appeal” when the Ray Graham Association dropped him from their group conversion list for Medicaid Waiver funding, a move which would have left him without services at a time when he was desperately ill. In a decision that was driven either by raw greed, revenge, or both, the Ray Graham Association culminated their two decades of atrocious exploitation and neglect with one last abusive grab for still more profits off of Will. Citing three separate, equally mendacious reasons for dropping him, they showed absolutely no compassion or decency. Fortunately, some very fine people in the state of Illinois intervened and Will was able to leave Ray Graham and get Medicaid Waiver funding, enabling him to spend the last five months of his life in dignity and with appropriate care.

But he wanted justice – he was tired of the exploitation and the lies. He wanted accountability. We are hopeful that the Human Services Committee will act on this matter and that in the future, no one else will be exploited and abused by Ray Graham and hear “No recourse and no appeal!” Will used to tell me, with great bitterness, “It must be nice to be (and here he’d name the Ray Graham chief of staff) and get away with lying and stealing….”

We promised him we would keep fighting for accountability and justice. Today’s events, we hope, will bring those goals a step closer to being realized.
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We would like to acknowledge 'Access Living' (Chicago), a wonderful organization that provided Will with hope, dignity, and true solidarity.

For More of Will's Story, his friend's promise to keep fighting for accountability and justice.
visit Justice for Will:
http://justiceforwill.wordpress.com/