Make sure to read The Disability Gulag, an article by disability rights activist Harriet McBryde Johnson in this week’s New York Times Magazine.
The “gulag” referred to is the American disability care system; a system that assumes that people who are unable to care for themselves physically unassisted must also be stripped of the right to make decisions. Can you choose your own meals, your own schedule, your own assistants, your own hair style – your own life?
For many severely disabled people, the path of least resistance leads to institutional care, where they can live with little freedom of choice and at enourmous expense to taxpayers. Why is this what our system encourages?
For decades, our movement has been pushing federal legislation, currently known as MiCassa, the Medicaid Community Assistance Services and Supports Act, to correct the institutional bias in public financing, especially Medicaid, the gulag’s big engine. We ask, Why does Medicaid law require every state to finance the gulag but make in-home services optional? Why must states ask Washington for a special ”waiver” for comprehensive in-home services? Why not make lockup the exception? ”Our homes, not nursing homes.” It’s a powerful rallying cry within the movement. In the larger world, it’s mostly unheard, poorly understood. We are still conceptualized as bundles of needs occupying institutional beds, a drain upon society.
We know better. Integrated into communities, we ride the city bus or our own cars instead of medical transportation. We enjoy friends instead of recreational therapy. We get our food from supermarkets instead of dietitians. We go to work instead of to day programs. Our needs become less ”special” and more like the ordinary needs that are routinely met in society. In freedom, we can do our bit to meet the needs of others. We might prove too valuable to be put away.
One thing the activists are pushing for is the right to hire non-nursing care, and to have non-nurse care seen as valid (and thus qualified for Medicare coverage). Johnson argues is that nurses are often ruled by standard proceedures, rather than allowing patients to control their own care.
Back in March, incidentally, I blogged another article by Harriet Johnson, describing a debate between Johnson and philosophy professor Peter Singer, which is also terrific..
The system is biased toward institutional care because it was set up at a time when that’s all that was available. Old people went into “rest homes” when families couldn’t care for them anymore. People with disabilities, particularly mental disabilities, were traditionally locked away from society. Options for care that enhance independence (and even the concept that elderly and disabled people should be independent) have only developed relatively recently. Trying to change a delivery and financing system to accommodate new paradigms of care and new ways of thinking about disability is just hard. Plus, it would require more money, and in the US, the folks in power want to reduce, not expand, government spending.
Hope,
Were you reading the same article that I was? The one where the author claimed that the existing system is, in fact, more expensive than providing non-nurse home-care? Or are you referring to other articles & studies that I should know about? If so, please post the names and/or links so I can read them.
Thanks
This is especially interesting to me, since I’m currently in school learning to be a CCA, or Continuing Care Assistant. You know, the people actually providing that non-nurse home care.
Here in eastern Canada, we’ve already been moving toward that model. The bar, so to speak, of independent living is being raised higher and higher, so that the care requirements of those in long-term facilities are much greater than they were even a few years ago. Everyone else, they’re in home care to one degree or another, the greatest focus there being on independence. The agency I’m placed with right now for clinical experience has over 400 clients in home care. And even at that, there are huge staffing shortages.
I know the Powers That Be in the US are loathe to adopt a Canadian model, but really. The amount of money we’re saving, and the quality of life preserved, is incredible.
Indeed, if it’s true that the type of arrangements that the author proposes are less costly than the current system (and I can see why they might be, with less medical transportation, therapy, and specialized nursing care), this might be an issue that both rights activists and libertarian government-shrinkers could get behind.
Waivers (the main way states provide home and community-based care through Medicaid) are less expensive than nursing home care because they are required to be “cost-effective” and states thus place a cap on waiver costs such that spending is equal to or less than the cost of nursing home care.
It is true that for a given individual, home care can be less expensive than nursing home care. But for some people, institutional care is cheaper.
I’m actually a big fan of home and community-based care. But the cost argument for it is tricky. Whether and to what extent states save money depends on how they design their system, and if they expand home care without limiting institutional care and taking other steps, they may actually spend more. Disability advocates argue against the woodwork effect, but just opening up HCBS without other measures will drive up costs. If you put the right design elements into place, though, you can save money, at least on some of your population.
A Wiener/Sullivan report (at http://www.uwex.edu/ces/familyimpact/reports/fis12two.pdf) noted, for instance, that serving people who might otherwise go into an ICF-MR in the community can be cheaper. But “Studies show that
in demonstration projects offering expanded home care to older adults, total costs
rose rather than declined (Wiener & Hanley, 1992).”
Here are a few other places that discuss the cost and woodwork effect issues:
http://www.ncsl.org/programs/health/forum/cost/strat5.htm
http://www.ncsl.org/programs/health/forum/shld/11c.htm
http://www.hcbs.org/resources/one/Cost-Effectiveness%20of%20Home%20and.htm
I understand why people use the cost argument. I used to work for a state legislator and in a state Medicaid agency (I was a long-term care person). States tend to do stuff if they think they’ll save money in their Medicaid programs. But to me, the argument for HCBS is a moral one. We should help people with disabilities and chronic health needs achieve independence and self-direction. Dumping people into facilities may be cheap and convenient, but social policy should strive for what is right, not what is easy.
Thanks hope. I’ll check out those links.
hope,
Thanks for the links. Having read through them I cannot agree that the “woodwork effect” should have any bearing on this issue. If such a thing happens, that is because there are people who need those services now but who would rather not voluntarily imprison themselves. It is just a way of saying, “Hey, if we don’t offer services, we save money.” Which is morally reprehensible.
It seems like there is little doubt that HBC will cost less per-person, on balance. The fear seems to be that we will need to provide services to more people. “Let them rot, if we create a system where services are delivered in the most odious way possible we can provide services to fewer people and save money!” seems to be the argument against HBC.
So I guess that I’m agreeing with you WRT it being a moral argument. It’s just that I don’t see the monetary argument against as valid. But, then again, that’s why I place where I do on the political spectrum.
The cost issue may not be a concern for you, but I assure you it is a concern for state Medicaid programs.
You’re right about what the woodwork effect means. There are, in fact, people who forgo institutional care but who would jump at the chance to get home and community based care. It does, in fact, mean that states limit their waiver programs to a set number of people and deny care to others until they get to the top of the waiting list and a slot in the waiver becomes available.
HCBS sometimes cost less but sometimes more, depends on the needs and informal supports of each individual. Some people with intensive needs are cheaper to serve in institutions. That’s why I don’t like the cost argument – if you say we should provide HCBS because they are cheaper, you leave yourself open to those who say “If they are not cheaper, we should not provide them.” We should provide HCBS services even if they are more expensive than facility-based services. If we save money on some people, great. (And we should certainly try to structure programs to be as efficient and effective as possible.) But if they aren’t cheaper — well, the right thing is not always the cheapest thing.
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Even if half of what is said inpaper is adhered to life of disabled will be far better.
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