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I cry all the time thinking of my child
July 23, 2013 9:44 AM   Subscribe

The Department of Justice filed a lawsuit yesterday (after a long investigation) against the state of Florida alleging the state is in violation of the Americans with Disabilities Act (ADA) in its administration of its service system for children with significant medical needs.

The DOJ sent a warning in 2011, stating that Florida was unnecessarily institutionalizing hundreds of disabled children in nursing homes, when, with appropriate services, many or all of them could live at home.

According to the complaint, even after Florida supposedly took steps this year to move more out of institutions, nearly 200 children with disabilities are still living in them, where they have only limited interaction with non-disabled people and are often far from their families and friends. Additionally, unannounced health official visits that are cited in the DOJ complaint, including one facility that had 17 kids in an activity area supervised by a single adult.

In September 2012, Governor Scott turned down $40 million in federal health care funds that would keep hundreds of disabled kids at home with their parents, rather than warehoused in nursing homes.
posted by roomthreeseventeen (50 comments total) 18 users marked this as a favorite

 
What kind of monster rejects money to help with children's hospice care?
posted by boo_radley at 9:53 AM on July 23, 2013 [7 favorites]


The dude made his fortune ripping off Medicare and Medicaid, and is completely bald, and has two first names instead of a first name and a last name. He's Governor Lex Luthor. When your state is run by a supervillain, this shit happens.
posted by Slap*Happy at 9:56 AM on July 23, 2013 [34 favorites]


Say what you will about Lex Luthor, at least AFAIK he never supported Jim Crow-esque voter suppression laws or wanted disabled children to suffer.
posted by zombieflanders at 10:15 AM on July 23, 2013 [14 favorites]


What kind of monster rejects money to help with children's hospice care?

I believe the specific monster classification here is "Republican Governor." Upon consulting both the original and second editions of the Monster Manual - as well as the Fiend Folio - it appears this particular monster classification is one so terrifying that not even Gary Gygax dared mention it in print.
posted by The World Famous at 10:20 AM on July 23, 2013 [28 favorites]


What kind of monster rejects money to help with children's hospice care?

Someone who thinks that principles matter more than people, always, no matter what.

Someone who is beholden to the powerful crank wing of his party, especially if he has higher-office political ambitions.

Someone who would reject a fire extinguisher to put out a fire if it were offered by someone from the other political party.

Someone who is an asshole.
posted by rtha at 10:25 AM on July 23, 2013 [13 favorites]


You know I used to live in FL, but this and Trayvon....nah, I'm not retiring there.
posted by Ruthless Bunny at 10:31 AM on July 23, 2013 [2 favorites]


Say what you will about Lex Luthor, at least AFAIK he never supported Jim Crow-esque voter suppression laws or wanted disabled children to suffer.
posted by zombieflanders at 10:15 AM on July 23

That depends on whether voter suppression or the suffering of disabled children would give him an advanage in his war against Superman.
posted by Billiken at 10:31 AM on July 23, 2013 [3 favorites]


I really hope this case paves the way for Congress to get their shit together and pass the Community Choice Act next time it comes up.

That act seeks to prevent this problem at the federal level, changing the structure of social security funding so that people with disabilities and their caretakers have easier access to in-home supports. as it stands now, living in a nursing home is sometimes the only way to access those services.

This act has been kicking around in Congress in some form since 1997. The issue of warehousing people with disabilities in nursing homes pre-dates the act by several years. I interviewed a bunch of disability activists as part of a research project a few years ago, and all the folks who had spent time in nursing homes referred to them as 'death camps' or 'concentration camps.' This was consistent both among the people I interviewed and in the disability studies literature I read. I can't even imagine being a little kid in such a place.

I think the fact that the nursing home residents in this case are kids might help a lot for gaining traction for this issue. Little kids, historically, have been used as symbols of pity or eventual hope for a 'cure' in the disability world--see Jerry Lewis telethons, every terrible 'inspiring' news story about a disabled child who joins a sports team or some other totally benign childhood thing. Visibly disabled adults advocating for their rights read as unsettling to a lot of people though. That kind of advocacy sometimes raises the specter of 'what if I became disabled too?', and this is too frightening for a lot of people to contemplate, for reasons that are really problematic. Personally I can only hope to kick as much ass and make as much of a difference in the world as the disability activists I've met personally, to say nothing of Ed Roberts and Wade Blank, but maybe that's just me.

I hope that this law suit brings about good outcomes both for the children of Florida and for the adults who've been advocating tirelessly for these changes for years.
posted by ActionPopulated at 10:39 AM on July 23, 2013 [18 favorites]


I can't really express how angry this makes me.

I'm physically disabled, and developed a MRSA infection that required that I be on IV antibiotics for a couple of months. My insurance went from cadillac to Medicare, which meant that I went into a nursing home for six weeks.

It was like being among the damned. I would see people with their mouths hanging open, staring at some invisible horror. There was lots of screaming. One guy was screaming "Adam Smith" over and over. My brother suggested that I scream back "invisible hand!" That was funny but aside from that, being there made me totally pro give me the pills before you send me to the nursing home, aside from a temporary basis.

And this is kids, unable to process the fact that adults with dementia say and do things.

I can't express how angry this makes me. I mean, I want to say something insulting about Florida, but not everybody in the state should be subject to my white-hot wrath
posted by angrycat at 10:43 AM on July 23, 2013 [25 favorites]


If we don't keep them hidden in disabled warehouses, we might start to feel "empathy", and no one wants that!
posted by blue_beetle at 10:47 AM on July 23, 2013 [7 favorites]


The lives of children are only valuable to Republicans while they are in the womb. Once born, you're on your own.
posted by aeschenkarnos at 10:52 AM on July 23, 2013 [19 favorites]


This is actually something that is one of those weird issues where state's rights can, if not appropriately checked, get in the way of people having equal rights.

I just finished reading Why I Burned my Book by Paul Longmore a disability activist (now deceased) talking about how this is really a state by state messed up issue. That in California, for example, you can be severely disabled and receive social assistance for living independently with a decent quality of life (including aides, transportation, whatever) whereas in other states (he used Alabama as an example but I'm sure Florida is similar) you wind up only being able to get assistance for significantly lower quality-of-life options like being institutionalized even when you could totally live on your own with the proper assistive technologies and assistance.

The whole premise of his book was that it was almost impossible for him, a severely disabled man, to go on to higher education because even the small graduate stipend that he received was enough to knock him above the low-income requirements for SSDI which provided him with in-home care. So his choice was to be a published author/academic but have to be institutionalized or ... not. He did a lot of activism on this point but it was, as you might imagine, exhausting for him. Ultimately he got a PhD and wrote a lot on these topics and his work is very valuable and worth delving into if these topics interest you.

It's always going to be less expensive to give people crappier care. This should not be the sole point at which we as a society decide to make decisions that affect people who are often already dealing with challenges and stigma.
posted by jessamyn at 10:54 AM on July 23, 2013 [28 favorites]


Meanwhile if you or your kid actually need long term in-patient psychiatric care God help you.
posted by bleep at 10:58 AM on July 23, 2013 [3 favorites]


Lex Luthor wants a better world for all of humanity. Rather than depriving its weakest members of much-needed resources, we should be working to build a stronger, more united society. Without this, we cannot defeat the super-powered alien menace that even now threatens to bring chaos and destruction on a global scale.

I'm Lex Luthor, and I approve this message.

Brought to you by the Alexander and Lana Luthor Foundation for the Advancement of Humanity. The Luthor Foundation is a registered 501 (c) (3) non-profit, which works in partnership with ADM, the RAND Corporation, TD Bank Group, and Lululemon to promote research and advocacy in issues relating to human survival.
posted by TheWhiteSkull at 10:59 AM on July 23, 2013 [11 favorites]


This is actually something that is one of those weird issues where state's rights can, if not appropriately checked, get in the way of people having equal rights.

I feel like the concept of states' rights has been about fucking people over this whole time, hasn't it? For every state that allows gay marriage and medical marijuana there's one that bans non-puppy-kicking or some shit.
posted by bleep at 11:01 AM on July 23, 2013 [8 favorites]


This is actually something that is one of those weird issues where state's rights can, if not appropriately checked, get in the way of people having equal rights.

Equal rights cannot exist, by definition, in a system where people in one state have different rights than those in another state. The entire concept of "states rights" is unconstitutional under the Equal Protection Clause of the 14th Amendment.
posted by The World Famous at 11:11 AM on July 23, 2013 [7 favorites]


One argument I always hear regarding states' rights is that due to regional differences, states know how to handle their state's issues best. This has always seemed weak in regards to healthcare problems. It's not like we are different species from state to state. We all get colds and the flu and cancer and disabilities. We all function in basically the same way. If our country cannot guarantee people in Florida the same access to healthcare and support as other states with higher standards, then something in this arrangement is failing. Another thing I hear regarding states' rights is, "Well if you don't like it where you live, then move to a different state!" Try telling that to someone with zero income and a major disability.
posted by thorny at 11:27 AM on July 23, 2013 [5 favorites]


"Well if you don't like it where you live, then move to a different state!"

the important thing to realize is that this doesn't actually, literally mean, "move to a different state." It translates roughly to, "fuck off and die."
posted by like_a_friend at 11:30 AM on July 23, 2013 [28 favorites]


The USA needs a generous millionaire who will help desperate, trapped people move to states/cities with better opportunities.

Like, everyone who wants to get the fuck out of [name backasswards state here] should be able to move to [name any better place here].

They can't, right now, because they can't cobble together a few thousand dollars to make the move, because they're broke and living hand-to-mouth. And they'll never be able to do it, because the only income mobility for almost all citizens is downward. Because fuck you, poor person.

A million bucks would move tens of thousands of people to better places.
posted by five fresh fish at 12:18 PM on July 23, 2013 [1 favorite]


This has always seemed weak in regards to healthcare problems. It's not like we are different species from state to state. We all get colds and the flu and cancer and disabilities. We all function in basically the same way.

True, but we don't all have the same income, and people always want their tax money to be spent differently depending on where they are.
posted by corb at 12:26 PM on July 23, 2013


A million bucks would move tens of thousands of people to better places.

Would it get them jobs?
posted by The World Famous at 12:29 PM on July 23, 2013 [3 favorites]


I can't express how angry this makes me. I mean, I want to say something insulting about Florida, but not everybody in the state should be subject to my white-hot wrath

Feel free to direct your wrath to everyone who voted in Rick "Ol' Snake Head" Scott, although I have yet to meet anyone who'll admit it.
posted by RobotVoodooPower at 12:30 PM on July 23, 2013


Basically, Rick Scott makes Rick Perry look good in comparison. Which is terrifying.

Both men are ideologue menaces to proper humanity and we would do better sending them to an island where they could enjoy things without causing trouble for anyone and replacing them with blow-up dolls.
posted by mephron at 12:55 PM on July 23, 2013 [3 favorites]


True, but we don't all have the same income, and people always want their tax money to be spent differently depending on where they are.

Are there really people who are against their tax money going to help poor disabled kids live in a real house with their real families? Of everything my tax money goes to in PA, I wish it would help get some of the thousands of kids kicked out of Medicaid back onto it.
posted by jetlagaddict at 1:02 PM on July 23, 2013 [4 favorites]


Well, sure. They don't have kids (or their kids are grown up, or) so why should their money go to something that they don't care about?

It's the same argument for education and school lunch and breakfast subsidies for the poor kids and pretty much sums up as "fuck them, I don't care because I don't have to".
posted by mephron at 1:10 PM on July 23, 2013 [2 favorites]


Well, sure. They don't have kids (or their kids are grown up, or) so why should their money go to something that they don't care about?


I think that's unfair. My husband and I don't have kids, and support plenty of initiatives for our tax money to support those who do.
posted by roomthreeseventeen at 1:16 PM on July 23, 2013 [1 favorite]


roomthreeseventeen: My husband and I don't have kids, and support plenty of initiatives for our tax money to support those who do.

I don't think that comment is directed at you, or at everyone without kids, just those who "are against their tax money going to help poor disabled kids". Some people won't see the value of spending money on other people until they're up against the wall when the revolution comes.

Thanks for the post, I think, even though it fills me with white hot rage and raises my blood pressure.
posted by RedOrGreen at 1:25 PM on July 23, 2013 [1 favorite]


Well, sure. They don't have kids (or their kids are grown up, or) so why should their money go to something that they don't care about?

It's the same argument for education and school lunch and breakfast subsidies for the poor kids and pretty much sums up as "fuck them, I don't care because I don't have to".


Yeah, sorry, I should have made it clearer that I find "taking care of disabled kids" to be something we should be funding with tax money in all states, the same as I do breakfast subsidies and education and all of the other niceties of modern civilization. I don't have kids, but the idea that a paraplegic kid is having his family/childhood essentially taken away because he had the misfortune of being raised in Florida seems like a bad thing all around.
posted by jetlagaddict at 1:30 PM on July 23, 2013 [2 favorites]


I don't think it's necessarily so much "fuck them, I don't have to care", so much as that there is a finite supply of money and people may choose to prioritize different things. They may care about different programs. It's not necessarily that they're all sitting around twirling their moustaches and throwing people on train tracks.
posted by corb at 1:37 PM on July 23, 2013


so much as that there is a finite supply of money and people may choose to prioritize different things.

The governor turned down $40 million in funding that would have helped at least some of these kids live at home. Explain that prioritizing.
posted by rtha at 1:44 PM on July 23, 2013 [9 favorites]


corb: there is a finite supply of money and people may choose to prioritize different things.

True. And other people may choose to think of them as assholes and shun their company.

They may care about different programs.

Based on past performance, such programs include tax breaks for them and farm subsidies and defence contracts for their buddies.

Sorry to be so rude about this, but we're talking about warehousing disabled kids in nursing homes while the law requires them to be housed with their families. Disabled. Kids. Separated from their families. To save money. While the Feds are offering funding to cover the bill.
posted by RedOrGreen at 1:47 PM on July 23, 2013 [8 favorites]


I don't think it's necessarily so much "fuck them, I don't have to care", so much as that there is a finite supply of money and people may choose to prioritize different things. They may care about different programs. It's not necessarily that they're all sitting around twirling their moustaches and throwing people on train tracks.

They turned down federal financial assistance to help disabled children while spending money from the state budget on actively hurtful measures such as voter suppression. That is well into villainous territory.
posted by zombieflanders at 1:56 PM on July 23, 2013 [6 favorites]


i mean yeah for example we could help some poor disabled kids or we could send people to MARS
posted by angrycat at 2:01 PM on July 23, 2013


...wait is sending people to Mars bad now?
posted by corb at 2:33 PM on July 23, 2013


The cost of sending people to Mars and the cost of helping the poor disabled kids could be combined and it would still be negligible to just a part of corporate welfare, oil subsidies, and a whole bunch of other things Republicans prioritize.
posted by _paegan_ at 2:45 PM on July 23, 2013 [4 favorites]


i personally think trading the welfare of the most vulnerable for manned space exploration is a bad thing. Not saying that we can't do both. But, from my view on the left, many on the right would be fine sending a bunch of desirables down the chute into meat slurry if that could be used to power something that could be used to show that USA is number one.
posted by angrycat at 2:46 PM on July 23, 2013 [1 favorite]


i mean yeah for example we could help some poor disabled kids or we could send people to MARS

In fairness, right now neither thing is being seriously undertaken or provided with adequate funding.
posted by jaduncan at 2:52 PM on July 23, 2013 [1 favorite]


Defence, on the other hand...
posted by jaduncan at 2:52 PM on July 23, 2013


This makes me sick with anger, but I'm certainly not surprised. The problem of how to properly care for the disabled hits close to home.

All three of my boys are autistic. My oldest son, Jason, is severely intellectually disabled as well. (I've mentioned him here before.)

In many ways Jason would be better off in an instituton. A good institution could provide him with the support that he needs and prevent the huge problem that he will have in the future when my wife and I die and no one is there to take of him. A few of the problems with institutionalizing him are that I can't bear to part with him, I'm afraid it will break his heart, there are almost no facilities available that aren't utter hellholes and who the hell is going to pay for it?

I spend a lot of time thinking about this and still haven't found a good solution. It may very well be that there isn't one.
posted by double block and bleed at 4:29 PM on July 23, 2013 [2 favorites]


It's not Lex Luthor. It's Harvey Dent, aka Two Face.

See he flipped his coin and long term care for the disabled kids lost.
But when he flipped his coin for school inclusion, the disabled kids won and they created the Florida Inclusion Network, which is an incredibly good model/resource for inclusion.

It's the only way I can resolve this disparity in my mind.
posted by plinth at 5:06 PM on July 23, 2013


Basically, Rick Scott makes Rick Perry look good in comparison. Which is terrifying.

Yes, but at least we now have the final two in our "Worst State in the Union" bracket.

Condolences to Alabama, Mississippi, North Carolina, Tennessee, Arizona, and Kansas.
posted by TheWhiteSkull at 5:24 PM on July 23, 2013


317: the people I was talking about always talk bout that kind of thing, how they don't understand why their taxes have to support schools, when they don't have kids / their kids are grown up / they send their kids to private school. They also tend to be against any form of public assistance - in general, the current really-right-wing anti-tax kinds. I've heard these, in my own family, and it angers me that their attitude is so short-sighted and compassionless.
posted by mephron at 5:27 PM on July 23, 2013 [1 favorite]


I don't think it's necessarily so much "fuck them, I don't have to care", so much as that there is a finite supply of money and people may choose to prioritize different things. They may care about different programs. It's not necessarily that they're all sitting around twirling their moustaches and throwing people on train tracks.

I live in Florida and used to work for Rick Scott's HCA corporation as a nurse. It most definitely IS a "fuck them, I don't have to care" attitude. Also, people who voted for Rick Scott tend to be very proud of it around here.
posted by hollygoheavy at 6:27 PM on July 23, 2013 [4 favorites]


It's not necessarily that they're all sitting around twirling their moustaches and throwing people on train tracks.

Well, to be fair, Florida doesn't have many train tracks to throw people on, anyway, since Rick Scott turned down federal money for high speed rail, too. Turning down federal money is his Thing.
posted by gatorae at 7:16 PM on July 23, 2013 [1 favorite]


Because, by some perversely pretzel-shaped logic, people in Florida don't deserve to actually get any benefits from the Federal taxes they pay. I guess that's one way to convince people the income taxes they pay are worthless.
posted by saulgoodman at 8:19 PM on July 23, 2013 [1 favorite]


Mephron, I once had my brother tell me that while he honored my compassion for all the innocent kids getting killed in Iraq, our economy was dependent on war to create innovation, so...

I told him that was incredibly unChristian and that if it was true, which I refused to believe, we deserved to die out as a species.

It's still hard for me to accept that he said such a thing, or that anyone would believe such hateful claptrap. Things have been very strained between us ever since.
posted by emjaybee at 10:02 PM on July 23, 2013 [3 favorites]


Emjaybe: it also fails to explain most Silicon Valley startups, Apple, Google, Yahoo and Facebook. Oh, and Tesla on the hardware side...I could go on. The claim that defence spending underlies innovation is less true now than it once was.
posted by jaduncan at 12:10 AM on July 24, 2013 [1 favorite]


The whole "people have different priorities" argument is so fucking crass. People are too big of assholes to help people they don't know dearly and don't give a fuck about huge societal problems until they are directly affected. Fuck them, that's why we tax.
posted by lordaych at 4:33 PM on July 24, 2013


(enough people don't care, that is)
posted by lordaych at 4:34 PM on July 24, 2013


When I read things like this, I'm reminded how incredibly lucky I am to live in Minnesota. I use a ventilator and have 24-hour nursing. I could have easily have been one of these poor institutionalized kids in Florida if my life had turned out differently.

This is a good example of the horrible institutional bias that persists in Medicaid. Federal law requires states to provide nursing home services as part of their Medicaid programs, but states are free to do fuck-all when it comes to providing community-based services for kids and adults with disabilities. I'd love to see Congress fix this, but we may have to wait until the Republican Party emerges from its civil war and rediscovers sanity.
posted by wintermute2_0 at 5:45 PM on July 25, 2013 [2 favorites]


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