One of the issues that we have with The Conversation Project is that the online materials suggest that a nursing facility is the only alternative to being “independent”. (The notion seems to be to ask, “If you had to go to a nursing facility, wouldn’t you rather have an advance directive that declines life-sustaining treatment?”)
It’s very disturbing that they don’t seem to have heard about Olmstead and home and community based services. Why don’t they ask, “If you could get long term services and supports (LTSS) to stay in your own home, would you choose to live with a disability?” (You can read more about our issues with The Conversation Project in our recent blog about our comment letter to New York’s Dept. of Health.)
Admittedly, it’s a long haul. ADAPT has been working the LTSS issue for 24 years. Every state had some type of Olmstead activity by now, but no state gives everyone the choice to receive long term care services at home, so we have more work to do. Here’s a press release about the next step, led by ADAPT and Senator Tom Harkin.
06/30/2014 ADAPT PRESS ALERT:
WHO: ADAPT and Senator Tom Harkin
WHAT: ADAPT and Senator Harking Announce the Introduction of the Community Integration Act (CIA)
WHEN: Wednesday, June 25, 2014
On June 25, 2014 Senator Tom Harkin, a long-time disability rights champion, introduced the long-awaited Community Integration Act. This legislation, if passed, will codify in law the Supreme Court’s 1999 Olmstead decision in which the court found that persons with disabilities have a right to live in least restrictive—community settings. Last year Senator Harking commissioned an important study that found that most states are falling far short of the promise and obligation that is implicit in the Olmstead decision. Accordingly, this legislation:
Amends the requirements for the Medicaid State Plan so that any individual who is at the institutional level of care must be provided equal opportunity to receive home and community based services. The state also needs to meet new requirements for providing home and community based services. The legislation has a section that defines and strengthens key terms including the definition of “home and community based”.
The legislation includes a section that addressed the ways that states limit or restrict access to home and community based services, including a requirement that states address the needs for affordable, accessible, and integrated housing.
The legislation incorporates the remedies and procedures of the Americans with Disabilities Act into the Medicaid law and creates a new enforcement mechanism where the Secretary of Health and Human Services can reduce the federal Medicaid match for a state that fails to comply with the law.
The legislation adds a new requirement that states needs to report on their progress in providing community integration.
The legislation ends institutional bias by including home and community based services as a mandatory service for all states.
And finally, it includes a clause that provides states with the time they need to amend state law to comply with these new requirements.
Our thanks to Senator Harkin for this crowning legislation that marks decades of selfless commitment to the cause of the right of persons with disabilities to live in the community.
Do we need to write our congressmen and women and tell them to pass this bill? This is needed so badly. And it is nonsense that it costs more money to care for someone in their own home.
My protest art is at http://www.Flickr.com/photos/sanda-aronson-the-artist/
My reactions to this blog entry, in the heat and humidity of my apartment are, instantly these:
1. There are folks who’d love to ship me off to a “facility”, viz a nursing home. I was just
thinking of my next email reply to my younger sister when the blog entry came over my
email from NDY. I had been thinking, and it’s appropriate to post here: I am really happy
that I am still living FREE, but alas it’s expensive. If something happens to the old man
who is between me and not enough money to pay the alleged low rent, I’m “facility bait”.
I identify and empathize with people who are incarcerated: in nursing homes because
the “state” won’t pay the cheaper cost of their rent and home care attendants or because
there are not enough wheelchair accessible apartments for disabled people (I’m a
wheelchair user due CFS/ME) and I identify with and empathize with people in prisons,
and the 80,000 individuals in the U.S. in “solitary confinement” (= torture by the U.N.).
2. If I am ever “shanghai’d” into a nursing home, I doubt they’ll keep me alive very long,
so I don’t need to answer the question: Would you rather be in a nursing home or dead?
I’m allergic and medical attention is to be avoided. I do point out the statistic of over
100,000 kills in hospitals by medical error, including wrong diagnosis and I don’t know
how many of that number includes willful neglect of people with severe disabilities
being “helped” without so requesting it, into the next “hereafter” (or whatever comes
next, if anything. I have little faith in either the political Left (where I am closer to
politically) or the Right, which uses us for their own propaganda but don’t really
“like” us any more than the Left and they all suffer greatly from “disabilophobia”.
Any progress toward keeping us at our own homes by our own choice with assistance
is welcome. I hope I live long enough to see positive results and can keep my independence,
and autonomy, which I treasure. Note: being autonomous and independent is not limited
solely to the ablebodied – it means choice in care and where to live. The U.S. Supreme Court
dealt a nasty blow to home care workers as only being “partly state workers” last week and
used them to continue the attack on unions. The conservative majority had to invent a new
category of workers. They include older folks who are among those who don’t realize they
are “us”….
Good for you, Sandra! You are sassy with strong opinions! I wondered where you were and was happy to see your comment.
We need to keep blowing our whistles to compete with the loud “trumpets” who would send the elderly and the disabled off to eternity or to institutions earlier than necessary in order to protect their private profits that are made off of the people’s social safety net, Medicare/Medicaid and Social Security.