Will likely had a prenatal stroke that left him with some disabilities. His parents had significant resources, and while that might normally give one more and better options, it didn’t turn out to benefit Will.
They took him around the country in search of a diagnosis, worried and confused about this beautiful child of theirs, who could not communicate well and was prone to outbursts of rage as a result. He ended up in a boarding school in Texas at age five, a school for children with emotional and behavioral problems – a school that, years later, was shut down after many children died there as a result of choke holds. Will was abused, and told me that his earliest memory was watching his parents walk away and leave him, 800 miles from home, in a place he believed he’d been sent for being an unacceptable human being.
He was acutely aware of his disability, and it caused him overwhelming emotional pain, labeled and segregated, always marked as “lesser” and “different”. He wanted to live on the “outside”, as he put it (the language of prisoners frequently marked his comments), be independent. When he was 21, his father arranged for him to join an organization for persons with disabilities in the Chicago area (public transportation in Chicago was better, and Will believed that was key to his autonomy). He arrived with hundreds of thousands of dollars in trust for the organization, doled out semi-annually. His father hoped this would ensure him good care. In addition, of course, the state of Illinois provided significant funding for his presence in this organization, which assured all parties that they would maximize his potential and assist him in integrating into the community.
They didn’t, and it should be no surprise that this was the case, given the significant financial disincentive they had for doing so. The more dependent the individual in their ‘care”, the higher the rate of funding they can expect. Combine this with understaffed, underpaid, barely trained “Direct Support Providers”, the front line caregivers, and highly compensated top administrators who were focused solely on bottom line issues, and the result was disastrous for all involved. (except, as usual, the top 1% of administrators who’s salaries and benefits reached well into the six figure column).
Will was in a grant funded program. In the summer of 2009, the state of Illinois was in a budget crisis (still is) and the grants were at risk. The organization dropped the program (it was the least profitable of their services, since it purported to assist the most independent of clients). Two weeks before this, Will’s cancer had been found to now be stage IV. In practical terms, it mattered little – the organization had done little but cause him grief and humiliation anyway. Friends were his real support, friends and siblings, but his declining health meant he was going to need more help than we could provide easily, and the organization told all those in the grant funded programs to apply for the portable and flexible “Medicaid Waiver” funding. This would allow those who might otherwise end up in nursing homes and other institutional settings to hire their own staff and remain in their own homes. Will lived in his own condo and remaining out of any sort of nursing home was paramount to him. The organization could sell services to Medicaid Waiver recipients, and this was their goal in urging people to obtain it.
We helped Will apply under a “group conversion” (from grant to Medicaid Waiver funding) program the organization was carrying out, but we also applied for “Emergency Medicaid Waiver” funding for Will, a faster route to the same end. But Will had no intention of hiring staff from the organization and he let them know this. The organization saw their cash cow threatening to flee his pasture; payments from his trust had already been stopped when they halted services. And they attacked, viciously.
They dropped him from their group conversion plan, citing four separate, demonstrably false reasons for doing so. They blocked emails from his designated advocates and slandered us in writing. They harassed Will with threatening phone calls – one coming as he was literally sitting in his oncologist’s office getting grim news on the latest scan. They did everything they could to prevent him from receiving the funding that would allow him to live out the rest of his life as he wished, because it would cost them money. We tried to stop them. We were told, by the chief of staff of this organization, that there was “no recourse and no appeal” to their actions; they were, in essence, a law unto themself. They had carefully stacked oversight agencies with friendlies, and were large enough to intimidate the state-designated facilitation agency in our area into submission.
Thanks to some wonderful people , we were able to make sure Will did get the “emergency” approval for the Medicaid waiver funding, thus negating the organization’s attempts to cut him out of any support if they weren’t profiting from it. And he spent the last eight months of his life “on the outside”, as he’d always wished. But he wanted justice. And he was angry. So I promised him I would do what I could to hold those responsible for his exploitation and abuse accountable. . And I know that compared to some outrages, this one might seem minor. But I believe this, the pursuit of justice in all it’s forms is an obligation. Will deserved far better than he ever got. Those who abused and exploited him deserve to be held accountable. And in a world where accountability and justice are far too rare for most of us, that possibility is worth platinum.