Tag: CCA

ADAPT Blogswarm, Fall Action 2009 Participants!

I’ve been excited by the response to my call to blog to end institutionalization around the Fall National Action!

I’m honored to announce the following blogs will be participating:

Announcement post

The Roving Activist’s Blog

Crippled Under The Law

NZ Accessibility

The Center for Disability Rights

Sanabitur Anima Mea

Today.com’s Official Disability Rights Blog

Composite: thoughts on poetics & tech and Hack Ability

LTC Reform

Empowering People Changing Lives

If you’re not yet listed as a participant and would like to be, please comment below. We need all the help we can get.



Blog To End Unjust Institutionalization!

ADAPT is going back to the heart of the civil rights movement, Atlanta, to demand that the promises made to Georgians (and all Americans) by the Supreme Court in Olmstead v. L.C. and E.W. are kept. Read ADAPT’s page on the action here.

Segregating people with disabilities in institutions solely because they need daily help, especially given the 21st century technology that can assist them and the widespread success of people with disabilities living in the community, is fundamentally unjust, immoral, overly costly, and, according to the Olmstead ruling, illegal under Title II of the ADA.

Olmstead, the case of two Georgia natives who wanted the state to stop segregating them, affirmed all Americans’ right to receive care in “the least restrictive setting” (i.e. not in prison-like institutions) and ordered all states to end unnecessary confinement of their disabled citizens (which it deemed illegal discrimination) at a “reasonable pace.” Most states have done little to nothing to comply. The institutional bias of the system is deeply entrenched, and even though the Olmstead decision came down 10 years ago last June, millions of people with disabilities are still kept out of sight, out of mind, stuck in institutions. “A right delayed is a right denied,” Martin Luther King, Jr. would say.

Georgia’s system, the focus of the Olmstead case, remains notoriously bad, insisting on expensive life-long institutionalizations that strip people of any choice in their daily lives, block opportunities to grow and become self sufficient, and kill hope. And most states are similarly awful, especially in the South. They refuse to heed the Supreme Court’s orders, reminiscent of their failure to follow school desegregation rulings “with all deliberate speed.”

We can no longer ignore illegal segregation and the community support services states must use to prevent it. We can no longer ignore Olmstead. We mustn’t put long-term care on the backburner and not include it in this year’s health care reform; telling us to wait another decade or more is deeply unjust. ADAPT will be in Atlanta, October 10-15, demanding that this change. You can help raise awareness around the Fall National Action by blogging!

The ADAPT Blogswarm, Fall ’09, will collect posts raising the issues of the institutional bias, ablist and unjust institutionalization, lack of community-based services, long-term care reform, the Olmstead decision and posts highlighting ADAPT’s Fall Action. Blogswarm posts will all be listed here, on nickscrusade.org, on October 12.

Your blogging is incredibly important to raise awareness of these issues (often swept under the rug). Please contribute to the blogswarm!

For instructions on how to participate, see
ADAPT Blogswarm, Fall Action 2009

Thank you!


Democrats Ignoring Long-Term Care, Activists Respond. LET MY PEOPLE GO!

44 years ago, Congress passed several historic amendments to the Social Security Act, the Medicare and Medicaid programs. Back then, there were no home ventilators, there were few medications for managing disease, there were no home Hoyer lifts, and Congress couldn’t imagine the elderly and disabled living at home successfully and independently. The technology and possibilities for independent living have been available for over three decades now, but the law has not changed. The feds only mandate that state Medicaid agencies cover long-term care in nursing homes and other institutions. Basically, Pharaoh will only allow you care in a prison-like setting. People with disabilities are forced every day to leave their taxpaying jobs and families behind to go into these prisons. It’s the only way they can get the care needed to stay alive. “Give up your freedom or give up your life,” is no choice at all.

The Pharaoh is now drafting his plan to reform America’s insane health care system, but has said that long-term care, which Medicaid is the number one provider of, will not be reformed in this package. How can they reform health care without addressing long-term care, one of the biggest expenses straining state budgets and bankrupting American families? It is bizarre that legislators and voters could ever see this as a separate issue, when it is one of the worst examples of how badly the system is broken. Institutions cost the most of any long-term care option, but are enshrined in law as mandatory, while home care services, the least expensive option, are slashed to the bone by states because they are “optional.” States are still forcing people with disabilities into institutions, the most costly option, because of the antiquated and discriminatory institutional bias in federal Medicaid law that both parties continue to choose to ignore.

The Democrats created the institutional bias when they drafted Medicaid law 44 years ago. Now, amidst their push to overhaul the system, they are ignoring calls from activists to rectify this injustice. On Tuesday, ADAPT activists, after months of letters and phone calls did not produce results, visited 25 Democratic offices around the country to demand that meetings be scheduled to hear their concerns, and that the Democrats apologize for 44 years of unjust policies that have stolen billions from taxpayers and stolen millions of productive lives from their communities. Here is a video clip of activists visiting Senator Baucus’ office in Missoula, MT and stating their case. Other activists were camped out at the DNC headquarters in Washington DC, keeping vigil until their demands are finally heard. 44 years is enough of this injustice; it’s time to change.


We all owe ADAPT our support. They are putting themselves on the line, facing arrest, threats, getting carried out of the DNC by police, their accessible portable toilet was confiscated, but they’re still speaking up when no one else will, for those in nursing homes that are not being heard. Pharaoh, LET MY PEOPLE GO!

Go Down Moses – Louis Armstrong


It's TIME to pass the CCA! on Twitpic

My Story Taken To The New York City Council

The New York City Council heard testimony today regarding the  Proposed Res. No. 1783-A, a resolution urging Congress to pass the Community Choice Act.

My partner Alejandra testified, and told my story.

Alejandra in the Council chambers

For the full text of her testimony, go here: NYC Council Hearing: June 17, 2009

“Fighting For The Community Choice Act” music video/photo mashup!!

Please help spread the “Fighting For The Community Choice Act” music video/photo mashup I made. of ADAPT protests for housing and the Community Choice Act.   I’m trying for a creative way to get the word out about the CCA.

Fighting For The Community Choice Act from Alejandra Ospina on Vimeo.

This, the Seventh Nick’s Crusade Video Blog, is a music video/photo mashup of ADAPT protests for housing and the Community Choice Act. For more information, go to http://adapt.org

The video features photos from ADAPT.org and Julie Maury, from recent ADAPT actions, and includes pictures of some of my favorite ADAPTers: Anita Cameron, Bob Kafka, Julie Maury and Nadina LaSpina, among many others.
The music is “Closer to Free” by The BoDeans.  Dig the rock accordion!

Brief Video Description
First protesters and their signs are shown from the Housing Action, “DUH CITY,” in Fall 2008 at the HUD offices in Washington. Then there are pictures of the Washington Action April 26-29, when ADAPT activists handcuffed themselves to the White House gate and crawled up the Capitol steps. 91 were arrested on April 27 and 99 were arrested on April 28.

Help me take this video viral!! Forward this, tweet this, post this on message boards and listserves, in blogs and comments. Please help us raise awareness about the CCA!
The video’s URL is http://vimeo.com/5003243


The Latest Leaked Info on Obama Administration’s Views About The Community Choice Act

Director of HIV/AIDS Policy and a senior disability advisor on the Domestic Policy Council, Jeff Crowley, speaks at a Candidates Form at the George Mason Center for Health Policy Research and Ethics
Director of HIV/AIDS Policy and a senior disability advisor on the Domestic Policy Council, Jeff Crowley, speaks at a Candidates' Form at the George Mason Center for Health Policy Research and Ethics

Jeff Crowley from the president’s Domestic Policy Council met with the board of the NDRN (National Disability Rights Network, formerly NAPAS1) this week and a summary of how Crowley conveyed the administration’s views on the Community Choice Act was leaked to several listserves online. The disability community deserves to know what the thinking inside their government really is, so I am publicizing this text:

Jeff Crowley from President Obama’s Domestic Policy Council came to our NDRN Board meeting this week. I am certain many people on this list know him but this is the first time I’ve seen him. Here is a summary of what he said and how he said it.

He certainly confirmed that it is the administration’s intent to offer the initial health care proposal without including long term care.

He went on the express his regret at the outcome of the ADAPT action two weeks ago. He described himself as having “worked with ADAPT in the past” and certainly assumed no sense of apology or responsibility for the arrests or the dismissive comments of his colleague, just “live with it.”

In a very guarded and cautious way he expressed the desire to deal with long term care in the second session of this Congress. He described CCA as ‘one way to deal with it.’ But he also said there were other ways. As I said I never saw him before and maybe he’s always this taciturn. But his comments about CCA were lukewarm at best.

Several times he cautioned against ‘high expectations’ and was >generally very flat and careful in his delivery.

Others have more experience and insight in this but my impression was that if we are to succeed with CCA the thrust is going to come from Congress and that the administration is being very cautious.

For what it’s worth …

1. The National Association of Protection and Advocacy Systems (NAPAS). .I won the “2003 Advocacy Award” from NAPAS and traveled to Washington, DC to receive the award and deliver an acceptance speech.

Fourth “Nick’s Crusade” Video Blog: ObamaFail! Administration Refuses To Lead On Disability Desegregation

Transcription (as captioned in the video):

Hello, this is Nick Dupree for the for the Nick’s Crusade blog. This is my fourth video blog, and today is the 252nd day that I’ve been in an institution because I can’t get access to community services. And it seems that the Obama administration is not going to help us fix this problem — the problem of the institutional bias, where if you need services, they’re not readily available in the community so, so many people end up in expensive institutions, and it’s a lot worse for them, lowers their quality of life, and ends up costing exponentially more. I know in Alabama, it costs a quarter of a million dollars to keep someone in an institution, and it cost $70,000 to give them 24/7 home care. It’s a very stupid financial decision that the government keeps making, and despite all the activism and the years of court decisions that are on our side, we’re still not getting change we can believe in, as Obama says.

It’s even more disturbing, because during the campaign, Obama promised us that he would support the Community Choice Act, which would let people have a choice to live in the community, versus being forced to go into a nursing home, as that’s all the government will pay for.

He promised he’d support the Community Choice Act during the campaign, but yesterday we discovered that the Community Choice Act has been removed from the White House website. The White House website had the Community Choice Act featured on their Disability web page, and now it’s gone. They erased us. They erased what we really needed, and that’s despicable. And now, they’re going forward with health reform initiatives, without addressing long-term care. They’re going to reform health care without addressing one of the largest expenses of health care, which is long-term care. They say “we don’t have time”. With this kind of expense, how can we afford to wait? How can we afford, morally, to segregate part of our population, and keep them trapped in nursing homes with no choice? It’s not moral.

I advise you to go to the website of the President’s health reform initiative, HealthReform.gov. There’s no mention of long-term care, not a word whatsoever. There’s no mention of nursing homes, there’s no mention of home care, and there’s definitely no mention of the Community Choice Act. Go to HealthReform.gov and see for yourself. We’re not included, and our segregation is continuing unabated. Nobody notices us. That’s something that really has to change.

Community Choice Act (CCA) Re-introduced!!

Today, March 24, the Community Choice Act was re-introduced in Congress by Senator Tom Harkin (D – Iowa) and Representative Danny Davis (D – Chicago)!

It’s way past time for this legislation.

Medicaid was passed in 1965, when medical technology was not advanced enough to allow severely disabled people to live at home, so institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get in Medicaid law. The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization). Hospitals and nursing homes strip control from the patient and give it to doctors and professionals “who know best.” If you’re lucky, your institution will be like this, and just be a big inconvenience, but if you’re unlucky, it’ll be like this, and you’ll end up beaten or dead.

Institutions are a failed, outdated model, relevant only in few, narrow situations, and have only remained dominant in the law from bureaucratic inertia (a force stronger than gravity) and corporations greasing Congressmen’s palms. That’s not a good reason to lock millions in The Matrix, preventing them from experiencing real life. It’s way past time to open up the playing field to home care. The CCA does that.

Everyone who cares about human rights should support the CCA. Blog it. Tell your friends. And especially your Congressman.


McCain Not Supporting The Community Choice Act

In my last post, I mentioned various politicians who are co-sponsoring and supporting the Community Choice Act:

New England has already caught on–MA and NY passed similar legislation years ago. Congressmen from both parties have signed on to the bill, which was formerly named MiCASSA; how can you argue citizens shouldn’t be able to choose where to live? Newt Gingrich even agreed to co-sponsor after ADAPT activists barricaded his nursing home fund raiser in 1996. :twisted:

Back in 2004, I met with my Congressman, Jo Bonner (R – AL 1st district), and convinced him to co-sponsor (he said he would not have co-sponsored had he not seen my fight).
Gore backed it in 2000, Kerry did in 2004, now Obama in 2008. McCain said he wouldn’t support it, and ducked explaining why in any substantive way.

I wanted to flesh this out.

Here is this moment, immortalized on YouTube.

In this clip, the audience member, an activist in a wheelchair with cerebral palsy, asks Senator McCain if he will support the Community Choice Act. She mentions the institutional bias, and the Community Choice Act enabling people to choose where they live. She is also referencing the terrible disparity between states when she says this (apparently Colorado) is one of the best states and that she moved to Colorado from Mississippi and her friend had to move there from Tennessee to get community services. The question is pretty straightforward: “will you support our legislation?” His answer: “I will not.”

In McCain’s reply, he says simply that he will not support the Community Choice Act, and that it’s “not the right kind of legislation.” He doesn’t say WHY, or what would be the right legislation instead. Then he quickly swerves off the topic and picks up on disability legislation he can think of that he supports (the Americans with Disabilities Act) even though this really has nothing to do with the question. This kind of artful dodging of the issue is classic politician tactics 101, and I’ve seen it first-hand countless times when I’ve interacted with legislators. They bob and weave away from the topic and ransack their mind for the the first non-related disability issue they can support. It is pretty lame.

But at least McCain answered the question. And it does takes guts to say “no” to someone on TV. And kudos to McCain for actually holding town hall meetings with free-flowing Q&A that isn’t vetted beforehand. Obama should be doing similar Q&As.

But McCain’s obvious lack of knowledge of the topic asked about is really sad. He only says “not the right kind of legislation” and nothing more. I’m assuming the nursing home industry told him this and he’s not looked further. Sigh.

This is really an uphill battle. We are a handful of unpaid grassroots activists and, being disabled, it’s hard for us to travel to Washington, DC. The industry has teams of highly-paid lobbyists leaning on politicians in DC and all 50 states and are very good at blocking any changes. The idea of home care competing on an even footing is anathema to them. They like the status quo as-is, and do not want anyone rocking the gravy boat. This would be like if, in the age of automobiles, government had a law that they will still only help people buy a horse and buggy and we can’t get progress because the horse and buggy industry backs so many candidates. We just want people to be able to freely choose between a horse and buggy or car, but the industry will go to any length to protect itself from competition. It sucks.

This is the current status of the Community Choice Act.
Thanks for reading!


What Is Medicaid? What Are Waivers?

What Is Medicaid? What Are Waivers?

A Medicaid Policy Wonk Explains

Medicaid stuff is my specialty. While I’m a political junkie who tries to glean deep knowledge of American political ideas on all sides on nearly every issue and the philosophies that underpin them, and, while in a year of intense study, I’ve gained a great deal of Judaic knowledge, my area of expertise is still disability rights and Medicaid, and I have more study and hands-on experience in this area than in any other. A solid case could be made that, though it’s hard to resist diving into the issue-of-the-day, I should shut up on other issues and focus on what I really am: a Medicaid policy wonk. 🙂

I want to explain to my readers what Medicaid is, and what Medicaid waivers are, because these are complex issues most legislators don’t even understand, much less the media, but are very critical to our most vunerable citizens.

Medicaid, along with Medicare, was amended to the Social Security system in 1965 as part of President Lyndon Johnson’s “Great Society” program, which sought to complete FDR’s “New Deal,” and finish something that had been sorely needed, and on the table forever: publicly-funded health care for “the indigent.” Medicare provides some limited hospital, nursing home, doctor, and now prescription drug coverage, among other things, for the elderly and disabled adults. Medicaid covers children and any other citizen who can’t afford medical bills, and it, unlike the purely federal Medicare, is administered by the states, so it varies widely from state to state. The federal judge who heard my case back in 2003 said Medicaid is the most confusing law he’s ever read in his long career in law. He’s right. I’ve read it, and it is an incredible labyrinth of half measures, carrots and sticks to compel states to provide coverage for nearly everything while in the next section providing microscopic loopholes so that the law doesn’t iron-clad force states to. Medicaid law painfully tip-toes a tightrope between federal mandates and violating states’ rights.

But what I want to address here is one of the most important roles that falls to state Medicaids, long-term care, especially what I’ve mentioned before, home care vs. nursing home and the institutional bias in Medicaid.

When Medicaid was established in it only allowed those with incredibly low incomes to participate, and few states provided home care at all. In the 80s the case of a young girl with a trach named Katie Beckett who was stuck in the hospital because Medicaid wouldn’t pay for home care was brought to the attention of Ronald Reagan. Everyone knew the situation was wrong. She was trapped in ICU, which was incredibly expensive, and it didn’t allow her to be with her family and thrive in the community. Her parents made too much money to even qualify for Medicaid. The Reagan administration recognized this and created a framework for home care waivers under Medicaid. The Katie Beckett waivers allow states who didn’t already provide home care to make exceptions (or “waive” typical rules) and provide home care by looking at the child’s income (nothing) not the parent’s income. Thus, a generation of severely disabled children got to qualify to live with their parents and get proper care. If Katie’s parents, and later Katie, hadn’t raised holy hell all the way up to the oval office, we wouldn’t have had ANY home care in most states for a lonnnnng time.

Katie Beckett herself emailed me once to congratulate me on my Crusade. She was a college student then in Iowa, walking around and fully included, when, as a baby, the establishment wanted to let her rot in the hospital forever. She was pretty cool. But she is busy now and doesn’t do tons of advocacy.

Anyhow, this is what waivers are, states “waiving” normal Medicaid rules (often waiving the rule that you must provide a given service to everyone) so they can provide additional services (like home care) to a specific population; in the program that I won in Alabama, the waiver provides home care only to those on ventilators, restricted to about 6 people. There’s another waiver only for those with HIV, implemented right after mine, possibly with my momentum. Every state has waiver programs for people with mental disabilities. Some states have waivers for diabetics, or only for a geographic area. I heard South Dakota created a waiver for only one dude. With the waiver system, state Medicaids can waive rules and provide as many or as little services as they want, to whomever they want, and get federal matching funds for it. And though they love to pass the buck to the feds, the feds have never denied a state’s request for a waiver. In the case of “Katie Beckett waiver” it means either a state’s home care waiver that allows children to be eligible under their income, or the underpinning federal law set up by the Reagan administration that allows states to look at the child’s income for eligibility. Every state, even Alabama with its third-world conditions, has a home care waiver or “Katie Beckett waiver” of some sort. Because of this federal mandate, children under 21 from middle class income brackets can qualify for EPSDT, (Medicaid’s federally mandated Early, Periodic, Screening, Diagnosis and Treatment program). But once the Medicaid recepient is an adult, there is zero mandate to provide them home care, and countless Americans have been given no choice but a nursing home. This is what spurred my successful campaign to force Alabama Medicaid to extend care past age 21 for a few people on ventilators.

But segregating people in institutions is a mandatory service the feds make state Medicaids provide, home care is still not mandatory for states. Though all states do provide home care on different levels, this “instutional bias” continues to limit home care options and create MASSIVE injustice.

As John F. Kennedy said in West Berlin, “freedom is indivisible, and when one man is enslaved, all are not free.” This echoes the classic Jewish idea of the oneness of humanity and our collective responsibility for social justice, which most Christians are exposed to through Jesus’ teachings, especially Catholics.

Of course the way Alabama and most states currently have it set up, most people don’t have the home care they need. Alabama’s policies have resulted in deaths, but also the policies of many other states. Alabama is definitely not alone. You’ve got states from Texas to Virginia lining up in the hall of shame. I don’t have any numbers, but I have plenty of stomach-rending personal stories. I lost my oldest childhood friend because his care got cut off at age 21 (story).

There’s a movement now to make home care mandatory under Medicaid, not only waivered, and that’s what MiCASSA, the legislation disability rights activists have been championing for a decade, does.

To say community works is like saying AIR WORKS! We all use it! We should not have to have a freaking special waiver just to have care in our community. It’s backwards. You should need a special waiver to be segregated in an institution, not just to live at home with the help you need. Community must be available to all. The civil right to live, work and play in the community among family and friends regardless of color, religion or disability, should be provided by states no matter what.


Free Our People

Support MiCASSA!!!


Filed Under:
Health care and Disability Rights