My friend Will uses this refrain repeatedly when describing his experiences with the "agency for people with disabilities" - I'll call it "The Agency" - that he's been with for 22 years. He's had to fight for every inch of independence he's achieved. And now that he's also fighting for his life, diagnosed with stage IV melanoma that's stubbornly resisting responding to treatment, he's finding himself in yet another pitched battle with this private, but mostly funded-by-public-dollars, not for profit.
I've told Will's story in other diaries, such as this one ...something fierce and imperishable.... He is a man of true courage and determination, who has never given up fighting for dignity and self determination in a world that sought to strip him of both.
The program Will is in is a grant funded program. Subject to annual review, it is a likely victim of the lousy economy in our state. However, there is another - far better - source of support funding, the portable and flexible Medicaid Waiver program. This funding would allow Will - for the first time in his life - to make choices about who his service providers are. To hire and fire the staff he may need to assist him in remaining in his own home, and living independently. And - sadly - to assist him in that home after hospital visits or when he feels ill; an option not currently offered to him in his present situation. The Agency told Will they couldn't help him there, and he was forced to rely on a family member with whom he has a very complicated and difficult relationship. It caused him enough distress that he seriously contemplated forgoing further treatment if such treatment meant the loss of his choices and autonomy. Medicaid Waiver funding is the Holy Grail of social service funding for persons with developmental disabilities.
But Will just can't play the game properly, it would seem. Having recently attended classes that included an emphasis on the disability rights movement (outside of The Agency, and thanks to a friend in the progressive movement) he decided to take steps that would protect his right to have his medical information shared only with those he authorized to have it. Given that Will is his own guardian, this does not seem like a big demand. You'd think, "Hey, the privacy rules about medical information already provide for that!". Well, there are rights and then there are rights that you get to use. And his right to control his medical information had been violated.
So, with the aid of advocates and friends, he took some steps to make sure this right was protected. And The Agency was not amused. They got a letter from lawyers. They began to block emails from one of his designated advocates. And finally, they removed him from the list of "clients" slated to apply for "group conversion" to Medicaid Waiver funding.
If this act sounds retaliatory to you, you are "thinking the worst of The Agency!" - or so claims the state designated service facilator that we complained to about this. Three different reasons (in a space of 96 hours) were cited explaining why Will had been removed from the list. 1) he'd asked to be removed 2) he'd been removed because he refused to furnish documents and, after we documented these were false 3) there was no room on the list for him.
Will, who is undergoing chemotherapy and is in no shape to do much fighting at the moment, is relying on those of us who assured him he did, indeed, have rights, to fight this particular battle. And though we are trying, we are finding that the world of social services is an incestuous place, and many of the players are quite willing to sacrifice Will on the altar of the Big Agency's desire for revenge rather than take them on.
And in the scheme of world problems, I guess this one is probably not all that earthshattering. Except for this: leaving the Agency is one of the most pressing goals in Will's life. And that his remaining time here with us may, unless an effective treatment is found, be measured in months, and not years. And finally, because his entire life has been one of an alienated individual battling, with great spirit and courage, institutions that cared little about human dignity - and as such, he is a reflection of what all of us, as progressives, are fighting for. He deserves better than to be, once again, a victim in a petty vendetta, helpless in the hands of those who care nothing about him but profit off him - all funded by the taxpayers of the state of Illinois.