I think I’ve written before about Nick Dupree and his efforts to change Alabama’s Medicaid home care regulations, which, until very recently, denied home care services to anyone over age 21. This message from Nick was sitting in my inbox when I got to work this morning:
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 EPSDT, 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, 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. Tuesday night, March 9, Chris died.
He was 26.
There’s not much I can add to this. I’ve always joked with my nurses that I’d die a “stupid” death. Something like my ventilator getting accidentally turned off and no one noticing. It’s hard to joke about that now. This was a stupid death in every sense of the word. It’s a stupid, meaningless, preventable death where nobody and everybody is to blame.
When it comes to issues like home care and community integration, Minnesota and Alabama aren’t just on separate planets. They’re fucking galaxies apart.
Medicaid Tragedy
Alabama Medicaid’s 21 cut-off policy, a tragedy: The 19th Floor: Worlds Apart ….
Ok, perhaps I’m missing something. Was no one in the same house as this person? Wouldn’t there be an alarm if the ventilator tubing became disconnected?
What you’re missing is how hard it is for one or two people to provide complete care for a severely disabled person, as well as keep house, do the shopping, and probably work, without any additional help.
Geena,
Yes, there are alarms. But alarms alone are not always enough to wake a truly exhausted person. Also, it’s entirely possible that Chris’ alarm never went off at all. The tubing may have fallen against the bedding or against Chris himself in such a manner as to provide continuing air pressure, so the ventilator never sensed a disconnect. (This is a fairly common scenario; it’s happened to me dozens of times in the 10 years I’ve been using a ventilator.) Without air, he would have been unable to make a sound to call for help.
I came close to dying once because of this; I coded but fortunately was discovered and resuscitated before brain damage set in. And after 8 years of going through the bureaucracy and finally the court system, I finally got 24 hour unskilled home care in split shifts in the state of New York. I’m one of the lucky ones. Ventilator users simply need awake and alert care at all times, but few of us actually get it.
Whoa, not missing out on realizing how exhausted his parents had to have been. The alarms at work are so obnoxious that I can’t imagine anyone sleeping through them, but I spose if you’re exhausted enough, it happens.
Isn’t there some sorta something that can be rigged to make the tubing stay on the trach? At work we use rubber bands, but I guess I was assuming that for long-term trachs, something a little more sophisticated was in use. I know tubing can pop off quite easily.
Maybe continuous oximetry would be a good idea at night. Night shift people can’t stay alert continuously unless they are nocturnal. How many nocturnal people do you know? Alarms are only good if they work, notify trained individuals, and (someone) intervenes quickly and appropriately.
What is a stupid death? A mistake, car accident, random killing,accidental drowning, or being target practice for Iraqi, Afgani, or militant muslims? Sorry to get off the track. I saw “Monster”, last night; and I was very alarmed, horrified, and many other adjectives, by the violence.
I work for a ventilator dependent individual that has not had 24 hour continuous coverage in 3 years, here in MN. I know he will die a stupid death. I am amazed that he hasn’t already. How do you direct someone when you can’t talk or breath? carpe diem
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oh wow.
my jaw dropped. seriously.
that’s beyond stupid, it’s insane!
not even just insane, it’s… kinda close to criminal!
and nothing probably changed since, right?
omg.
i’m so sorry…