Disabled Still Forced Into Institutions Just For Turning 21: Open Letter To The Disability Community, August 2009

Posted by – August 2, 2009

Obama Administration Signs the CRPD Treaty, But Is In Flagrant Violation Of It, The ADA, Olmstead, and Its Own “Year of Community Living” PR Campaign, As Arbitrary Termination of Medicaid Home Care Services at Age 21 Continues Unabated

The recent addition of the U.S. as a signatory to the UN Convention on the Rights of People with Disabilities (CRPD) has been much ballyhooed. Any idea if/when Article 19 of the CRPD Treaty will be enforced? That’s the article that guarantees me community choice, the freedom to live in my community, without fear of being segregated in a nursing home because the government will only provide care in institutions. You know, the right to “the most integrated setting” that TEN YEARS AGO the Supreme Court ruled we’re entitled to under the ADA?! This is particularly bitter for me because I am currently STUCK IN AN INSTITUTION.
Why agree to Article 19 when we are not following it?! The feds continue to look the other way while poorer states cut off community services for the severely disabled just because they’ve turned 21, and leave them no choices but death and/or an institution. I had to fight that policy years ago in Alabama, and won, but apparently this despicable practice is still going strong in Illinois, as I recently read on VentWorld:

My son turns 21 at the end of August and will lose his current funding source. There are no adult waivers or funding that would provide him with the same level of support he has now. Trying to get info to prove that he would NOT be safe in a skilled nursing facility or nursing home. I found a web site where I can look up the name of a home to find out their staffing levels, ratios, violations, etc. but I have to know the name of the homes first. When I do search for homes the results are not specific to ones that can handle complex ventilator care. The state of Illinois wants the cheapest plan for my son which means without proper documentation they will only provide him with minimal funding for nursing care in our home. He currently has 114 hours per week and 336 respite care hours per year. The state is saying the adult program only allows for about 30-40 hours per week – more if we use non-skilled people. The state wants to find the cheapest way to care for him and if that is a nursing home then I must have proof that the staffing ratios will not be adequate for him. Plus there are no facilities anywhere close to where we live so he would have to leave his community, his friends, his family, his job, etc. He is very social, wants to continue living at home and just because he has a birthday his life is being turned upside down. If you know of facilities that take patients 21 years of age or older with complex ventilator care and what level of staff and their ratios please respond. Thank you.

I’ve been fuming furious ever since I found this post a few days ago; despite all my years of work on the 21 “aging out” policies, despite the fact that I brought national attention to the problem and forced the HHS secretary to notice, the government (state AND federal) are still allowing this unintended consequence of the EPSDT program to put even ventilator-dependent people and their families in a horrible, untenable positions where their lives will be torn apart at best, and lost to nursing home neglect at worst. For adults, it’s incredibly difficult to remain at home if you have a severe disability. As Dr. Ford Vox wrote in a recent piece in Salon: “…if your electric wheelchair breaks down or needs a new battery, we’ll have no problem moving you into a nursing home. You’d prefer a new battery so you can continue living at home? You picked the wrong state. As a poor Missourian, you’ll have no more than 30 days for your rehabilitation. Not quite ready to go home? Need a few more days of intensive therapy? Again, you picked the wrong state. Missouri Medicaid wants to admit you to a nursing home so much that it also doesn’t allow for outpatient physical therapy services or in-home therapies, taking another essential tool out of the hands of your medical team.”

We won CRPA, The ADA, Olmstead, and more, but our victories seem almost inversely proportional to the realities on the ground, as states slash services to the bone at the same time as the disabled population (uninsured or uninsurable) grows. The president announced his “Year of Community Living” as a mother in Illinois prepares to move her ventilator-dependent son away from his job and community and into an institution just because he’ll soon turn 21 and “age out” of what little services the feds require state Medicaid agencies provide to children.

The “out of sight, out of mind” mentality of our politicians makes me angry; the fact that so many advocates in the disability community, who should be fighting for our most vulnerable people, are every bit as unaware of the 21 cutoff infuriates me. The termination of Medicaid home care services at 21 is like this wormhole that’s continuing to suck innocent people in and lead them to institutionalization and/or death, and the fact that I’m (as far as I know) still the only activist noticing this and fighting back is intensely frustrating and disturbing. We’ve GOT to stop fiddling while Rome burns, and unite to end the worst injustices. And the ongoing FAILURE to rectify the 21 cutoff situation should certainly be at the top of that list.

Nick

  • “the fact that I’m (as far as I know) still the only activist noticing this and fighting back”

    Do you know about and are you in touch with ADAPT?

    http://www.adapt.org/

    I am absolutely sure they would be up for being involved in this, if they are not already aware of it…

  • right, I keep involved with ADAPT

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  • TI_Sam

    No person aged under 65 (minimum) should be forced to live in a nursing home. Nursing homes are for the elderly.

    People have the right to expect to be cared for in a home of their choosing, in their community of choice.

    The disability system in Australia is very crisis driven and has a long way to go before it catches up to the more enlightened system in place in the UK, but even here funding is available for people to continue to live at home with parents or significant others (with support staff to assist) or to live out of home, without being in institutional care.

    It is an absolute tragedy that supposedly one of the most forward-thinking and rights-driven nations of the world should treat members of its community in such a short-sighted, barbaric manner. It beggars belief.

    Personally I see one of the issues as being “disability” rarely makes it high on the political agenda.

    There has recently been a labor party national conference in Australia. Topics covered included Climate Change, Gay Marraige, :”Green” jobs, overseas trade – all very important I'm sure.

    Meanwhile people with a disability, their families and carers are in crisis and it never hits the radar.

    It's just not “hip” to talk disability and I have been wracking my brains to find someway to make this issue appeal to the masses.

    If people who want same-sex marriages can get almost the whole country talking about this issue, and get it high up on the national agenda, then surely we can do the same for disability? Currently we are much too quiet, too divided (by distance, by exhaustion, by shame) and much to easy to sweep under the carpet in the hope we'll go away.

    Raising the political profile of disability issues, getting goverments and communities talking about this – in the pub, in the queue at the bank, with your friends over coffee – is the only way I think there will ever be any change. It needs the whole of the community to be aware – regardless of their opinion, masses of people having an opinion would be a giant leap forward.

    Without the backing and actions of goverment nothing happens, and without the mobilisation (no pun inteneded!) of those involved to bring this to the forefront of politicians thinking, the government has nothing to back; and no need to seek it out as there are plenty more groups lobbying for government attention.

    If anyone has any ideas about how we could raise our political profile (regardless of country of origin or political persuasion) it would be great if you could share them here.

  • What're the biggest issues affecting disabled people in Australia?

  • TI_Sam

    No person aged under 65 (minimum) should be forced to live in a nursing home. Nursing homes are for the elderly.

    People have the right to expect to be cared for in a home of their choosing, in their community of choice.

    The disability system in Australia is very crisis driven and has a long way to go before it catches up to the more enlightened system in place in the UK, but even here funding is available for people to continue to live at home with parents or significant others (with support staff to assist) or to live out of home, without being in institutional care.

    It is an absolute tragedy that supposedly one of the most forward-thinking and rights-driven nations of the world should treat members of its community in such a short-sighted, barbaric manner. It beggars belief.

    Personally I see one of the issues as being “disability” rarely makes it high on the political agenda.

    There has recently been a labor party national conference in Australia. Topics covered included Climate Change, Gay Marraige, :”Green” jobs, overseas trade – all very important I'm sure.

    Meanwhile people with a disability, their families and carers are in crisis and it never hits the radar.

    It's just not “hip” to talk disability and I have been wracking my brains to find someway to make this issue appeal to the masses.

    If people who want same-sex marriages can get almost the whole country talking about this issue, and get it high up on the national agenda, then surely we can do the same for disability? Currently we are much too quiet, too divided (by distance, by exhaustion, by shame) and much to easy to sweep under the carpet in the hope we'll go away.

    Raising the political profile of disability issues, getting goverments and communities talking about this – in the pub, in the queue at the bank, with your friends over coffee – is the only way I think there will ever be any change. It needs the whole of the community to be aware – regardless of their opinion, masses of people having an opinion would be a giant leap forward.

    Without the backing and actions of goverment nothing happens, and without the mobilisation (no pun inteneded!) of those involved to bring this to the forefront of politicians thinking, the government has nothing to back; and no need to seek it out as there are plenty more groups lobbying for government attention.

    If anyone has any ideas about how we could raise our political profile (regardless of country of origin or political persuasion) it would be great if you could share them here.

  • What're the biggest issues affecting disabled people in Australia?