When Alejandra mentioned to me that even Raul, like me one of two brothers with an uber rare muscle mitochondrial thing, on a ventilator full time and an awesome advocate too, went ahead with the Ice Bucket Challenge, I replied “if only ADAPT had a meme like that!” So together, Alejandra and I brainstormed a new, ADAPTed version of the challenge, and here it is.
I offer a different focus for the ice bucketed masses on social media, and try to give voice to the views of many like me in disability rights circles: we don’t want “eradicating neuromuscular diseases” to be the only agenda… quality of life is the key, and every day we’re fighting uphill against systems that hold us back from living the best lives we can.
Yes, awareness is great. Yes, medical research is super important, for quality of life too. Politicians who ham it up with an ice bucket after voting to sequester cut the NIH budget so severely that ALS research and all NIH programs had to regroup even more barebones than before shouldn’t be re-elected! Democrats voted for that sequester en masse while the Republicans held out for even more harsh cuts; nominating the lot of ’em for a bucket o’ scorpions challenge would be more like it.
Neuromuscular research funding should be auto-approved and Raytheon, Northrupp Grummond, KBR and their ilk should have to pass the hat on social media.
Medicaid long-term care still mandates antiquated nursing home care but in-home supports are “optional,” meaning most states offer only spotty or barely-existing home care, and even that is increasingly threatened. Private “major medical” health insurance like Blue Cross phased out coverage of long-term care nationwide in the early ’90s excepting a handful of examples, so unless you’ve purchased a special long-term care plan in your working years to cover full-time care in your senior years, Medicaid is the only place you can turn. Private long-term care plans aren’t available to ALS diagnosed people, preexisting condition y’know, much less sold for the Nicks and Rauls with inborn genetic muscle diseases.
This means the most severely affected by neuromuscular diseases like ALS, the Americans who need full-time care the most, have only the dilapidated 50 states/different Medicaid programs for the long-term care that is so essential for both survival and a life worth living. RIGHT NOW these vulnerable groups are unable to get the needed services and supports for the quality of life that they deserve, with their loved ones in their homes, and face worse conditions than they should because of our insane political system. That fight is RIGHT NOW, not four, five generations hence like the potential cures we seek.
Standing up for the people in the trenches now is important, awareness of our lives, our struggles, our dignity, is crucial oxygen for us as we face daily battles… Visit www.adapt.org to learn more and to donate.
The 21 cut-off, the policy that I fought hard to change in Alabama with a full campaign that I began two years before the cut-off would hit on my 21st birthday, and now I fight on this blog, is still a threat to many around the country. As people with severe disabilities are saved by technology and are increasingly able to grow up, greater and greater numbers of us will trip over the 21 cliff, “aging out” of the in-home care that we need for the most basic survival and dignity. It is a problem that too many state Medicaids essentially shove the people who need services and supports the most off the cliff as a 21st birthday present, and this continues to cause real harm.
We cannot allow states to undo the incredible progress people have made, with the help of life support technology, surviving to adulthood and thriving, adding our talents and contributions to our families, communities, states, and country. It is not the will of the American people that states pull the rug out from under the most vulnerable just because they’ve turned 21, but too many states have been doing exactly that for far too long; I’m continually haunted that, in Alabama, not all my friends survived it.
This video, featuring Sarah, and Jordan of the 21 disabled campaign, two college students grappling with the consequences or future consequences of the 21 cut-off and other hardships foisted on them by short-sighted Medicaid bureaucrats, will wake you up to the continuing crisis that aging out at 21 is right now, in 2013.
In this video ^ Jordan mentioned her first 21 disabled video: you can see that original 21 disabled video here that went viral and really made a difference, pressing Florida Medicaid into giving Jordan a reprieve until graduation.
I really admire how Jordan, with so little time remaining on the clock—just a few months—when she found out the 21 cut-off existed and found herself barreling toward the 21 cliff, was able to fight back effectively and win. A big part of her success was her savvy with social media, maximizing Facebook, Twitter and WordPress to get her YouTube video in front of 30,000 people in a matter of days. Neither YouTube, Facebook, Twitter or WordPress existed during “Nick’s Crusade” (March 2001-February 2003) but now that these social media tools ARE available, I hope me + the disability community writ large can leverage them effectively enough to make the bulk of internet users aware of the 21 cut-off, and then build the support necessary to end “aging out” of in-home care in all 50 states!
Sarah, who talks about her experiences first in the newest video, has no reprieve from the 21 cut-off on the horizon. She describes a situation of fighting tooth and nail to get services, waiting until age 18 to finally get some desperately needed services and supports so she could live out her college dreams, then upon arrival at the university dorms was told she would have to go home, for the excuse I’ve seen used again and again to oppress and exclude us, “liability reasons.” Sarah didn’t leave and didn’t give up, and that alone shows more fortitude than most could fathom. And now she is looking ahead at the 21 cliff, facing the prospect of the life-sustaining hands-on care that makes college possible for her going away after her 21st birthday.
Such a system as Florida has, that allows you just three years of the care you need to survive—from age 18 to 21—then pulls the rug out from under you mid-semester, is a uniquely cruel system. In fact, there is little else in American life THIS openly cruel in its impact on people with disabilities and their families, and, in my travels, I’ve not seen any other policy that poses as clear a clear and present danger to people with severe disabilities as this 21 cut-off policy does, which is why I’ll never shut up about it. Help me. Don’t let me be the only voice out there on this issue of “aging out” of life-sustaining services and supports! Given the intransigence of Florida Medicaid and the intractable nature of the Florida legislature when it comes to social programs, we will need all hands on deck to gain meaningful change for Sarah!
Awareness of this issue MUST go on the front burner. It is a nationwide problem: Raul Carranza in California, who is on a vent 24/7 like me, was forced out of college at ACLU for his 21st birthday when he no longer qualified as “pediatric” and the state became stingy (go to Raul’s web site for the full story, which is more complex than other cases, but has a very similar root cause).
Let’s do something.
IDEA 1: consider helping me with BLOGSWARM FOR SARAH: End the age 21 cut-off!. If I can get Sarah’s permission, I’d create a hub here on www.nickscrusade.org for a mass movement of blogging about preventing the dream-destroying 21 cut-off from harming Sarah and others, with everyone posting on their blogs on the issue, expressing their unique thoughts, views and ideas, and linking back to the central hub, as was done with past ADAPT Blogswarms and Blogging Against Disablism Day (BADD). Interested bloggers, please contact me via email at nick @ nickscrusade.org or on Twitter @NickDupree or on Facebook at Nick Dupree
IDEA 2: This goes hand-in-hand with the preceding idea; just MAKE JORDAN AND SARAH’S NEW VIDEO GO VIRAL! Put the video, embedded above, or this nickscrusade.org post with the video in it in front of as many people as possible; Facebook it, tweet it, re-tweet it, email it, reddit it, SHARE IT far and wide! Whether you blog about the video or not, SPREAD IT!
We live in interesting times. Now more than ever, survivors can get involved online and share their stories with the world. It’s an amazing thing that those of us who breathe and/or move with the help of technology can now use other, Internet-based technologies to participate in the world, make our unheard voices heard, give the megaphone of the blogosphere to the unrepresented, make public the pain and oppression that has always been hidden away… but to really be heard over the social media noise, to really maximize online tools and make a difference, WE NEED YOUR HELP! You, the person reading this right now.
The ‘swarm has arrived! Bloggers across the globe have united to shine a light on rampant unjust institutionalization and segregation of people with disabilities and ADAPTs Fall Action in Atlanta confronting it!
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!
Nadina LaSpina (NYC ADAPT) gives a powerful, stirring speech about how far disability rights has yet to go, and Elaine Kolb sings an insightful song about the medical-institutional complex at the 19th ADA Anniversary Event in Central Park, July 26, 2009.
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!
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.
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
This is Nick, of Nick’s Crusade blog. This is day 243 of me being in an institution in this lovely blue hospital gown. Right now, ADAPT activists are protesting in Washington, DC to end unnecessary institutionalization, like I’m experiencing, and making care available in the community.
10 years ago, there was a lawsuit that went to the Supreme Court about two women, Lois and Elaine, who, for no apparent reason, just because they had mild disabilities, were stuck an institution in Georgia. The Supreme Court ruled 10 years ago that under the Americans with Disabilities Act, unnecessarily institutionalizing people is illegal, and that we deserve, and have a right to, our services in the most integrated setting. So this case, this Olmstead decision, got Lois and Elaine out of the institution. And right now, Lois is protesting in Washington with ADAPT.
With millions of people still in institutions, when they don’t need to be, the promise of Olmstead has been a lie. The states have not implemented Olmstead, and it’s ridiculous. It’s time for a change.
99 Arrested as ADAPT Blocks Independence and Constitution Avenues on the Hill, then Crawls Up the Capitol Steps
Washington, D.C. — ADAPT, the nation’s largest cross-disability, grassroots disability rights organization, took the fight to include long-term services in Health Care Reform up to Capitol Hill today. On Monday, Obama administration officials made it clear that the administration was not going to provide leadership on getting long-term services included in health care reform, saying it was up to Congress.
“I guess what happened at the White House kind of got us wondering who is leading the country, the President or Congress,” said Bob Kafka, ADAPT Organizer from Austin, Texas. “Sad to say but President Obama gets a D on disability rights after his first hundred days. Throughout his campaign and currently on his website he promises to support independent, community-based living for Americans with disabilities by enforcing the Community Choice Act, which would allow Americans with significant disabilities the choice of living in their community rather than having to live in a nursing home or other institution. Many of us who voted for him feel angry and betrayed that he isn’t keeping his promise.”
The Community Choice Act (CCA) (S. 683, HB 1670), introduced in March 2009 by Sen. Tom Harkin (IA) and Rep. Danny Davis (IL), would remove what is known as the ‘institutional bias’ in Medicaid. Currently, Medicaid pays for older and disabled people to go to nursing homes and institutions, but won’t pay for the same assistance, generally at a lower cost, in a person’s own home. Many states have limited or no home and community based services with lists that keep people waiting for years in institutions and nursing homes before they have any hope of getting services. Some wait so long they die before their name reaches the top of the list.
“It’s no surprise we decided to have a presence on Capitol Hill today,” said Mark Johnson, ADAPT Organizer from Atlanta, Georgia. “We blocked streets to make it visibly clear that we aren’t going away and we won’t go away until CCA passes or is included in Health Care Reform. Research has shown that people who live in the community are healthier and have fewer secondary conditions. It’s fiscally irresponsible to increase health care costs by not insuring that people have the choice to receive services and supports in their own homes. And it’s bad policy to put all the dollars only into front-end health care, once again denying people with disabilities their civil rights and forcing them to continually be the last people served.”
After police arrested 99 people from both the House and Senate sides of the Capitol, the remaining 400 ADAPT members went to the Capitol, many spilling out of their wheelchairs and crawling up the Capitol steps to hold an impromptu CCA rally, reminiscent of the famous stair crawl on the day the ADA was passed in 1990.
ADAPT winds up its week in Washington on Wednesday by holding a joint rally with SEIU, the fastest growing, largest home care union in the country, with a membership of over 420,000. Sen. Harkin will speak at the rally, as will an ADAPT member and his SEIU attendant. People with disabilities and seniors want workers who are paid a living wage, who have health care benefits, and time off. Supporting a fairly compensated workforce reduces turnover, increases reliability and insures a better trained attendant workforce for those who need assistance in their daily lives.
“After the rally, we will go in teams to visit every member of Congress, asking them to co-sponsor CCA and include long-term services in Health care reform,” said Barb Toomer, ADAPT Organizer from Salt Lake City, Utah. “There will be well over 1000 people visiting Congress on Wednesday from a number of different disability and provider groups, all with the same message: pass CCA and include long-term services.”
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