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Medicaid policy causes another 21 cut-off death, close to
Open letter by Nick Dupree
March 21, 2004
Another tragedy has struck in Mobile due to Alabama Medicaid's 21 cut-off policy. And it's pretty close to home.
My family has known Chris Wiggins since we moved to Mobile, Alabama in 1983, I was 1 years old then. Chris had Duchenne's Muscular Dystrophy. His mom and my mom started a sort of two-person parent support group.
Around 1999 I think, Chris turned 21, and of course lost his care.
Alabama provides nursing care through the EPSDT program, they are mandated to. But after age 21, people are no longer eligible for EPSDT, and Alabama does not provide any sort of full-time care through other programs (except for the handful like me on the new, inappropriate, insanely over-medicalized AT waiver we got from my "victory," last year [attendant care just makes more sense but isn't an option] or people with MR allowed on the MR/DD waiver).
Chris' parents were trying to do his care 24/7, alone. They had not fully slept in 4 years or something. Chris wrote up something about his problem and I put it on my Crusade web site. In his message, he wrote of his fear that unless he could get some sort of care back, his ventilator tube could come disconnected and no one would be there or wake up to hear his ventilator alarms in time to save his life. As you know I've been warning about the dangers of providing no support to people after age 21, for years.
March 4, Chris' ventilator tube came off, and no one woke up. Once found, Chris was taken to the hospital, where he was in a coma and brain dead from the prolonged lack of air to the brain. March 9, Chris died.
He was 26.
Recently, he was going to be approved for the new AT waiver I'm on that we won in the Nick case settlement last year, and his care was going to start soon. It hadn't.
I went to the wake, and the funeral.
Because neither of us had/have much support to get out of the house (I'm working on this) I rarely saw Chris, though he lived 10 minutes from my house, I last saw him at his 24th birthday party, but we kept in touch by chatting on-line. We were friends.
Chris was a person. He loved heavy metal music, sci-fi, X-men, comic books, writing action stories, collecting things, his friends, and women (this was the primary topic of our conversations).
I'll miss him.
His death was totally preventable, and only the fault of the awful situation of near-total lack of services in Alabama. Parents can't maintain care alone indefinitely.
As the leader of the anti-21 cut-off campaign, I went on local news and
explained that the system is still broken. Here is the video of this local news
piece on Chris, from the WPMI web site.Just click
and find the Chris headline, check under it, and then click launch newscast.
Chris' mom tells me she wants to make sure this never happens to another family again.
I'm not even sure what to say more, it's so awful, and I don't know if I'll be writing or speaking about this much more (too painful) but I thought you should all know about it, know that there's still a developing, worsening situation with home care policy in America as more and more people turn 21 and find the supports they need just aren't there.
And action is needed to protect others from meeting similar fates.
I believe this is the fifth 21 cut-off death in the city of Mobile alone, that I know of.
We know that when care is not provided to people who need care to survive, they don't survive. We know that if Chris had full-time care, if Chris did not live in Alabama, and lived in a state that provided such care, this wouldn't have happened. The IFs are irrelevant to Chris, but maybe could help the other future crises out there on the edge right now.
I think it's fair to ask, what is being done to protect people from dying due to very preventable lack of care again and again in the future? What does it take to get some Olmstead litigation to force state Medicaids to move some of their institutional funding into community services? When will Congress even acknowledge this issue and hold hearings on MiCASSA? Does America care? How many times will this have to happen?
All kinds of stuff is flowing through my brain now.....grief, mourning, disappointment, frustration, rage, motivation, fatigue, passion, love, fear, and ponderings about media, society, people, girls, disability, life, my life, my future.....my mind is always racing with stuff but even more now.... It's the life that matters. I wish it were 2005 and I was already getting to grad school far away.
For now, I've been emailing this story to all my connections, every major advocate in America, every contact I have inside the US Senate, House, HHS, media, more.
I've matured and evolved tremendously in the last 18 months. I've been constructing and writing a new web page for months now to reflect the person I am now, my ideas and advocacy goals. Eventually I will explode with a whole new campaign, with new ideas, and a broader, progressive vision. I'm just having a slow time finishing the new web site, which will be huge.
I'll keep advocating for major changes, keep writing, keep speaking around the country, keep studying, and keep trying to fix my own care, so it's enabling me to live a full life instead of trapping and preventing life as it is now. Chris used to have at the end of his emails, as his signature, "If you have a dream, or something you need to say, or to let out, don't hesitate, don't let go of that opportunity, it may never come again."
I plan to remember that.
It's what you do with the time you have that matters.
Stay tuned, I will continue to work on these issues. And I need all the help I can get.
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