Video: “Aging Out” of the health care needed to survive at 21 threatens future of two Florida college students

Posted by – April 5, 2013

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.

With hope,

Nick

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  • Jo Lynn

    Very informative posts here. This one and the Obama care ones and I’m sure many others too. I don’t have a large audience but I am going to join you in sharing this. Thank you for the work you are doing.