Slumgullion #45
Yeah, I'm still here. I got new eyeglasses this weekend, and while it may take a few days to adjust to the bifocals (!) I hope to be spending less time squinting and more time online again.
In the meantime, this is the news I'm catching up on today:
"What happens when chronically ill kids grow up?" -- A June article in the Houston Press explains the gap in health care for disabled children who come of age. It's an important topic I haven't seen covered in such depth before, but, hello... the "first large generation of chronically ill pediatric patients to reach adulthood"? I'll be 40 in October, and I'm really tired of hearing how all the seriously disabled children before now died before needing adult health care. We're here. We've been here. A number of us have even been blogging online for quite some time. It's just that we're mostly invisible to the mainstream media.
"Girls parents and agency face charges in starvation" -- Danieal Kelly of Philadelphia was 14. She died in 2006 and the charges have just now been filed. Mark at The 19th Floor writes about Danieal and the grand jury indictment (pdf file with one very graphic photo) of nine people for her needless suffering and death.
"Immigrants facing deportation by U.S. hospitals" -- From a NYT series on how the government and others "compel illegal immigrants to leave the United States." Here's an excerpt:
Eight years ago, Mr. Jiménez, 35, an illegal immigrant working as a gardener in Stuart, Fla., suffered devastating injuries in a car crash with a drunken Floridian. A community hospital saved his life, twice, and, after failing to find a rehabilitation center willing to accept an uninsured patient, kept him as a ward for years at a cost of $1.5 million.
What happened next set the stage for a continuing legal battle with nationwide repercussions: Mr. Jiménez was deported — not by the federal government but by the hospital, Martin Memorial. After winning a state court order that would later be declared invalid, Martin Memorial leased an air ambulance for $30,000 and “forcibly returned him to his home country,” as one hospital administrator described it. . . .
Mr. Jiménez’s benchmark case exposes a little-known but apparently widespread practice. Many American hospitals are taking it upon themselves to repatriate seriously injured or ill immigrants because they cannot find nursing homes willing to accept them without insurance. Medicaid does not cover long-term care for illegal immigrants, or for newly arrived legal immigrants, creating a quandary for hospitals, which are obligated by federal regulation to arrange post-hospital care for patients who need it.
American immigration authorities play no role in these private repatriations, carried out by ambulance, air ambulance and commercial plane. Most hospitals say that they do not conduct cross-border transfers until patients are medically stable and that they arrange to deliver them into a physician’s care in their homeland. But the hospitals are operating in a void, without governmental assistance or oversight, leaving ample room for legal and ethical transgressions on both sides of the border.
Indeed, some advocates for immigrants see these repatriations as a kind of international patient dumping, with ambulances taking patients in the wrong direction, away from first-world hospitals to less-adequate care, if any.
“Repatriation is pretty much a death sentence in some of these cases,” said Dr. Steven Larson, an expert on migrant health and an emergency room physician at the Hospital of the University of Pennsylvania. “I’ve seen patients bundled onto the plane and out of the country, and once that person is out of sight, he’s out of mind.”
"Taking the long way around" -- From Oceanside, California, an example of how higher gas prices and budget cuts that have led to more crowded public transit is pushing wheelchair users off the bus. We'll be hearing more stories like this, I suspect.
They're two main ways that the media portray women who have disabilities. It's either kind of passive, needing help, victim, suffering. You hear a lot of those words, wheelchair-bound, these negative-word connotations. ... On the other hand, women with disabilities who have done pretty well for themselves are put up on a pedestal. I think sometimes that's a bad thing, too.
12 comments:
Missed the slumgullions, REALLY missed you--and glad you're squinting less!
Referring to the first article, I think this might be the first generation of kids reaching adulthood who've needed high levels of care their whole lives. From what little I understand of your disability (please correct me if I'm wrong), it seems that you've only needed nurses fairly recently. I'm not trying to diminish your importance (I think in-fighting over who is or isn't "really" disabled has damaged us almost as much as ignorance or ableism, so I don't want to go there). I just think it's a different health care issue.
I have to agree with Kay here. I am 41 and am one of those chronically-ill pediatric patients who reached adulthood and had to contend with the shift in care once I was catapulted into the adult health care system. And having grown up in hospitals, I can assure you that those within my generation certainly did not all die off and that there is a lot more of us than this article would seem to suggest.
I would also add that chronically-ill does not necessarily mean you have to have the kinds of illnesses such as those depicted in the article. You do not necessarily need a breathing machine or round-the-clock nurses to warrant significant care or to suffer the gaps of level in care once you make it to adulthood.
Finally, this has nothing to do with "in-fighting" as suggested in the above comment. To me, it is just another perfect example of how a lot of us have been ignored and marginalised, to the point of even denying we existed before this new generation came along.
Okay, maybe I was wrong. I didn't mean to suggest that the older generation doesn't also fall through the cracks in our health care system (there's plenty of cracks to fall through). I also still think we're talking about two different issues. I am on a ventilator and I do need round-the-clock nurses. I also think the problem of being ignored and marginalized applies to all of us. Just yesterday I had to explain in a chat room that "cripple" was a derogatory term. No one in the room had ever heard that before.
Thanks, Penny!
JDspeeder1: You're right that I've only had my trach, feeding tube and vent for the past, well, almost three years now. But I saw specialists from birth, had pneumonia a dozen times before adulthood, was visiting local MDA clinics (which do focus very much expertise on childhood muscular dystophies like Duchennes), had major spinal surgery at 15 and used a wheelchair for all my high school years. So, in the late '80s I made the transition to adulthood and found many of the attitudinal and administrative difficulties the article describes.
Have you noticed the increased attention to disability and long term care issues that has come with the Boomer generation getting old enough to worry about such things? Because I definitely have. I think this is similar. Some critical mass of concern creates more coverage. Which is great, so long as they don't frame it as an "all new problem," making the historically invisible even more "invisibled."
Exactly. The added attention helps all of us. Unfortunately, we're also in a war that's creating more disabilities every day.
Here's another way to say what I've obviously been misstating. The group of people who've needed total care their whole lives is relatively new, calling for a different health care solution. The need for that solution is definitely not new, though.
Great to see you back, Kay...and yes, as I turn 46 and read the words about "the first generation to 'come of age...'
When I 'came of age,' disco had not yet died...so someone missed the train somewhere.
Reading this again--and realizing that "the first large generation of chronically ill pediatric patients to reach adulthood" certainly wouldn't be post-boomers. Reaching for "the first" is usually lazy reporting, anyway, but if any group would qualify for this in the 20c., it would be the folks who survived some of the last big polio epidemics--some of whom went on to be the giants of the disability rights movement--that's definitely a cohort that came of age.
"hope to be spending less time squinting ...
Hrm. I just realized I was leaning way forward and squinting as I read that. Methinks it may be time to get me some reading glasses to augment the vanity-driven contacts I wear. Buh. Aging sucks.
Good to see/squint you back. Been missing your witicisms of late.
Glad to see you back blogging! Was asking your twinner on how you were doing. Haven't read the articles in depth yet due to children running around but they have information definately to chew and ponder on.
Hmm, not a victim, not a hero...suddenly I don't know who I am!! :)
Because deciding how to use public funds for a public facility is exactly like choosing which of your children to let the Nazi's kill.
All I can say to this is: WOW.
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