Extremely Disabled and Aging Out of Care

With all the cuts that are coming (and have already happened) to state and locally run social services, I am frightened by the prospect of the impact this will have on people who need intensive help. In the school I work at, there is a TEN YEAR waiting list for services provided by the county for individuals with extremely debilitating disorders (ie, severe autism and mental retardation). It's gotten to the point when as soon as a child is identified the school specialist beg the parents to sign up so that they can start receiving the services they need when they turn 21. And we're talking about round the clock care, intensive help from aides, expensive medications. Etc. And it seems that the class for the lowest level kids just keeps growing. What kind of solution does anyone have? More people will be in need of expensive, vital, and scarce resources and it seems that no one is talking about it. Leaving it up entirely to the parents isn't a solution either. What if they die? Who would want to take on that burden? And you simply can't force a person to remain the legal custodian of a thirty year old man with an IQ of 20. It's just a very depressing situation.

I find it interesting that this topic is right on top of the Ron Paul thread. Which makes me wonder who he thinks should take the responsibilty of care, particularly with his philosophical views. Do you think this is the responsibility of wider society or should be the legal duty for the lifetime of the disabled person?

edited 13th May '11 9:46:25 AM by Freekippers

IQ of twenty? I didn't think that was possible.

I believe that there are people who are so autistic or retarded (they basically don't even engage with the test) that under a certain score they are classed as untestable. Irregardless, what do we do with them when they hit 21?

Ah, the DSM IV even has a label of "profound mental retardation" for scores under 20.

edited 13th May '11 11:31:10 AM by Freekippers

The obvious conclusion is to take everyone with an IQ of less than 100 and shoot them.

...

Gotcha.

On a serious note, it sounds like the care sector simply needs either more government money or better savings organisation to ensure citizens can pay for care. You can't achieve something if something is simply underfunded. Unless people suggest you can somehow turn something into nothing?

edited 13th May '11 11:52:48 AM by GameChainsaw

You can do that very easily. Turning nothing into something, which is what I think you meant, is pretty much impossible IMO.

Sadly there seems to be a movement going around which can be summed up in two words. "Fuck em"

I mean this is a pretty expensive problem that is just going to get worse, why isn't anyone talking about it? (By anyone, I mean politicians or other national health care leaders.) It's isn't going away, why ignore it?

Facepalm

Nothing into something, nothing into something!

The grammar reversing are gnomes words my!

Because its depressing and people dont like to think about depressing things.

People would rather it be swept underneath the rug.

And we don't seem to have leaders capable of acting on a social issue unless its in the public eye.

Once again an example of the weakness of western leaders.

I mean out of the people, should Sarah Palin be the one publicizing this? Who's going to take care of her adult child with down syndrome when she and Todd die? What if her other children can't do it? Isn't the personal political?

I believe the increase in the number of children being diagnosed with autism (which also means an increase in the number of those with severe autism) coupled with the fact of the state budget crisis (states traditionally being the provider of care for the most disabled with the fed kicking in some aid to them) means that this is going to blow open soon.

edited 13th May '11 12:14:04 PM by Freekippers

^Potentially, but there4s one flaw for her in campaigning about it.

The tea party base is probably one of the bases that'd be in the "fuck em" camp.

What happens? Same as is happening today, they become homeless or wind up in jail. A smelly guy who's babbling slightly to himself gets on the bus with a load of cans in a plastic bag, and everyone looks the other way. A smelly guy who rants and raves and screams at passerby will get arrested (and fed, clothed, taken care of) for a bit. But they'll let him back out on the street if he's not done anything. A man with the mind of a three year old will get caught stealing and be imprisoned.

That's what happens already. That's what'll continue to happen.

Assuming that you're American, then you should be aware that the way our country funds social services is undergoing radical change, which unfortunately is largely unreported. Currently most social services are either delivered directly by government agencies or through non-profit organizations using government or corporate grants. Now the funding for those services is being severely cut back. Non-profit or for-profit organizations are expected to pick up the slack. At the same time, such non-government organizations are also expected to find very creative ways to fund these services. We are moving to a system in which private donations, corporate giving, traditional government grants, and fee-for-service are going to be mixed together in new and unusual ways. All this is not the result of some sort of centralized plan, but political compromise. It's confusing, and there are gaps. But lots of intelligent people are working on this: http://csi.gsb.stanford.edu/healthcare

No, it doesn't. Back in the 60's, the diagnosis of 'childhood psychosis' was about as common as autism is now, and the vast majority of those kids acted just like modern-day autistic kids. Nowadays, childhood psychosis is extremely rare and only diagnosed for kids who are obviously hallucinating and/or deluded. Read A Circle of Children, a true story about a special school in the 60s for kids with 'severe emotional problems'. Pretty much all the kids they describe there would be called autistic by modern standards. Plus there were many kids just called 'retarded' who'd now be considered autistic. These kids haven't gotten any more common, it's just that they're being called something different. Probably the system overload is due to a drop in institutionalization, plus fewer people putting up with caring for such kids without any services at all.

I agree with your main point. We need better services for people like that. One thing is that care workers are paid beans for doing very hsrd work, so no one wants to go into that line of work. I was paid 15 dollars an hour for an 8 hour shift looking after two severely autistic teens with two other caregivers, one of whom was unpredictably aggressive. And they didn't ask for any qualifications - I could've known absolutely nothing about autism. I certainly wasn't told anything about these kids besides their ages and diagnoses. I wasn't told how they communicated, whether they were on any medication, what they liked and disliked, the fact that one of them would unexpectedly grab people hard enough to bruise them, etc.

They should have a training program requirement for care workers, and they should pay them well enough that people want to do the work. The training program would involve education about alternative communication methods such as signing, PECS and Dynavox, common disabilities such as autism and Down Syndrome, disability rights issues relevant to this population, how to de-escalate a meltdown, self-defense training focused on preventing injury to both yourself and your attacker, basic medical procedures such as changing a G-tube or performing CPR, etc. Once you've finished the training, the pay should be high enough to make a decent living. And every individual who needs this kind of care should have a package made up by people who know them, to teach new caregivers about them. It should say how they communicate, what kind of care they need, whether they have any behavioral problems and how those are to be managed, what kinds of things they like and dislike, etc.

If you have the proper support and you understand the person you're working with, being a care worker can be a great experience. A lot of these people are very nice if you know how to relate to them, and you can take pride in doing something that is necessary and helpful to a vulnerable person. But if you have no experience or training and are thrust in to work with someone you don't know who can't readily communicate with you, then it's really unpleasant for both you and them.

Not to mention that in the early 90s, AD/HD was the fad diagnosis. Same symptoms though, kids just being kids.

And here I was thinking I was being careful by using "diagnosed" instead of "number of real cases." ;)

I think this actually brings up another profound, perhaps more philosophical, problem. I think we can all agree that there is a finite amount of money in the pot for care for the disabled, yes? There are obviously a wide spectrum of abilities of people that need care, from people with Down Syndrome who can live semi-independently to adults that aren't toilet trained and need 24 hour supervision. (I remember reading a sad case in a magazine of a severly autistic man who needed to be supervised around water because he simply wouldn't stop drinking. One day he managed to get access to a hose and died of water intoxication.) Thankfully there are more people with more moderate disabilities who need less intensive services than those who need the most. However the bottom five percent's (this is an arbitary number for discussion's sake) takes up a huge chunk of the money pot that the more independent share from. My question is this, how do we make the situation fair? Do we allocate more money to those who could live with some assistance (ie closed workshops, communal living places, people in charge of finances) or do we prioritize the needs of the people who need the most care, and will probably need even more care as they age? Most tropers here are very thoughtful and while this situation is not unique, I would like to hear what specific solutions or insights you have about this.

Well, firstly, we could allocate less money to things like the military - paranoid people aside, US is in absolutely no danger of getting invaded if they were to reduce military spending to a more reasonable amount. It's really not necessary to have a war every 5-10 years.

I'm sure there are other areas where money's being wasted that could be better spent on ensuring quality lives for everyone.

Regarding how to allocate within the pot of disability-related money, well, firstly, stuff that could make them both less expensive over the long term and happier would obviously be important - things like good quality life skills classes and specialized therapies. Preventing institutionalization would also be a big priority, since lots of studies show that the same individuals function much better if kept in the community than if institutionalized. (Back when institutionalization was the norm, Down Syndrome was said to cause profound mental retardation. Even non-disabled kids, if institutionalized, develop serious delays in milestones.)

If it absolutely had to come down to a choice between funding the higher functioning person or the lower functioning one, I'd pick the lower functioning person because the higher functioning one may be able to limp along without the funding. (And I say this as a high-functioning autistic person, who'd greatly benefit from some services.) But we should do our best to avoid having to make that kind of choice.

Oh, and another thought: Non-profit organizations for specific disabilities should focus less on research into curing said disabilities, and more on funding better care for people with that sort of impairment. Especially since a lot of disabled self-advocates are opposed to curing their disabilities, or to the way such cures are marketed.

We need less people on this planet.

Triage. Prioritize the less-disabled ones that can function adequately with some help over the profoundly disabled and the old.