Obama raps..and wins...

Too upset to discuss the WA state assisted suicide referendum, but since President - Elect Obama won, I had to smile when i saw this remix of Kanye West's Stronger...

Vote as if your life depends on it, Because it does...

The title says it all. Justin Dart never uttered such truer words. no matter what, the Bush Presidency will be over. So today, go vote. I don't care WHO you vote for, just vote.

ada amendents signing coverage (or complete lack of it).

Appearently no one besides congress members were present at the signing of the ADA Amendments act this morning. There is nothing on the white house website, C-span did not have it on the list of events they were covering, and I haven't really looked for media - but I did find Tom Harkin's statement, so without further adieu:

September 25, 2008

harkin statement regarding ada amendments act becoming law

Senator who was chief author of original ADA attended White House signing ceremony today

WASHINGTON, D.C. – Senator Tom Harkin (D-IA) released the following statement today after President Bush signed the Americans with Disabilities Amendments Act. The bill was recently passed unanimously by both the House and the Senate. Harkin was the lead sponsor of the bill in the Senate.

“The day, 18 years ago, when President Bush’s father signed the original Americans with Disabilities Act into law was the proudest day of my Senate career. But this day comes close, because this new law overturns Supreme Court decisions that have taken away the rights of people with disabilities, and restores the original promise and protections of the ADA.

“I think of my brother Frank, who was deaf, and who suffered terrible discrimination and exclusion, and I think of millions of other Americans with disabilities who face similar obstacles. As chief Senate sponsor of both the original ADA and this new ADA restoration act, I am deeply gratified that we could work in a bipartisan fashion to ensure that all Americans have the right to equal opportunity, full participation, independent living, and economic self-sufficiency.”

Since the ADA became law in 1990, a series of court decisions narrowed the category of who qualifies as an “individual with a disability,” contrary to Congressional intent. By raising the threshold for an impairment to qualify as a disability, these court decisions have deprived individuals of the discrimination protections Congress intended to provide. The ADA Amendments Act would remedy this problem and restore workplace protections to every American with a disability.

Hopefully some sort of media coverage will show up.

Mike R.

A profile on me and my nomination to the NSCIA Hall of Fame.

The folks @ NSCIA made it really inviting to have a press release for my nomination to the Hall of Fame (too bad I'm going to lose to Harriet McBryde Johnson, but she is incredible as a writer and lawyer, and I can not honestly say I'm in any way worthy of anything over her.

My local paper did a wonderful piece on my nomination. Some cool famous folks even gave their two cents. I'm quite shocked and amazed and so truly thrilled it is hard to put into words. Thanks to all those folks who have been supportive over the years. I'm only as good as the folks around me.

obamas vp pick...waiting for the txt msg...

OK, I thought it was just me getting antsy in the woods of Maine wondering when Obama would announce his vp pick - i had Fond memories of reading "Clinton Gore 92" there when i was 18 and a few weeks from entering college...

my hope: Biden, he's an elder statesmen. He has a relative in Maine, Biden's solid on disability issues and i think I've met him at some point.

I so wish I was in Denver. Twittering (Tweeting??) Denver would be much easier than trying to blog the DNC in Boston 4 yrs ago.

tho, the Michael Moore idea of Caroline Kennedy would totally be FTW! (for the win)

The AP seemed to say txt msg tomorrow am.

Time is saying Biden, bloggers found this, so I'm calling Obama/Biden 08...


Are you out there people who make unknown bloggers famous???

I called Joe Biden before the txt msg...

need a savvy disabled politico lefty blogger? uppitycrip at gmail dot com.

Call to save access to powerized mobility TODAY!!!!

Come senators, congressmen
Please heed the call
Don't stand in the doorway
Don't block up the hall
For he that gets hurt
Will be he who has stalled
There's a battle outside
And it is ragin'.
It'll soon shake your windows
And rattle your walls
For the times they are a-changin'.
- bob dylan (hey, i saw him less than a week ago...)

Today, PLEASE call your senators and congress folks and ask them to take complex rehab wheelchairs out of the competitive bidding pool.


After you make your calls/send an email, record it at
http://www.vgmdclink.com/switchboard/

1. Ask your members of Congress to support passage of HR 2231
http://www.govtrack.us/congress/bill.xpd?bill=h110-2231 and S 2931
http://www.govtrack.us/congress/billtext.xpd?bill=s110-2931


2. Also ask your Representative to sign the Dear Colleague Letter,
http://www.aahomecare.org/associations/3208/files/House%20Medicare%20letter.pdf


Contact information for your member of Congress is at
http://www.ncartcoalition.org/

lower left hand of page, type in your zipcode


-Background, etc.,
http://tinyurl.com/6a7x5s

-Additional information at
http://tinyurl.com/6hggdk

What's New, http://www.aahomecare.org/

Today, Fight for your Medical Equipment Rights

Today, Fight for your Medical Equipment Rights by listening to a Webinar about Drastic Medicare Cuts,

ON THURSDAY, Call Congress!



Marilyn Hamilton (The founder and inventor of quickie wheelchairs) is leading a national campaign to stop the cutback for Medicare Reimbursements on Power Wheelchairs. This drastic budget cut is targetted at the most basic needs of any human being - the right to move, independently. While the cost of everything - from Gas to Food, the government wants to cut spending for the most severely physically disabled folks. The people who need and benefit the most from powered mobility, are often the least able to afford it, due to disability, poverty, or other factors. The fact that most powered chairs are priced at over 10 grand, (A manual lightweight chair can easily cost 5 grand.)

Medicare dispursement rates are often used by private insurance (and state run, like Maine's Dirigo Plan) to set their own reimbursement rates. So it will effect other folks besides those on Medicare. It will also stunt future research and development on a myriad of other Adaptive or Assistive Mobility Equipment. Critical technology which would filter down in subsequent generations of cheaper chairs will not be developed,

This may afect you now, but as we all age, even those paralympians are going to want to give their torn rotator cuffs a break. Sunrise Medical (the company which now owns Quickie and some other chair brands) is sponsoring the event, but Marilyn Hamilton (who actually retired from Sunrise) is one of the disability rights movement's legends and whose history mirrors the DRM's history.

The webinar is Today at 2 pm - But there will be an archive of the Webinar on sunrisemedical.com and probably on my site as well as others, (still pending...) For info on the webinar about how Competitive Bidding will impact consumers

Register Here: https://www1.gotomeeting.com/register/144768277
-May 21st, National Call in, voice your concerns and request help to
carve out complex rehab from competitive bidding


The webinar will more than likely give this out - but the # is (202) 224-3121.
The sponsor list may be completely out of date - but a bunch of good folks are partnering with Sunrise Medical.:

-ADAPT
-American Association of People with Disabilities
-America Paraplegia Society
-Boston Medical Center
-Christopher and Dana Reeve Foundation
-Kennedy-Krieger
-National Council on Independent Living
-National Spinal Cord Injury Association
-United Spinal Association
-Self Advocates Becoming Empowered
-Shepherd Center
-Paralyzed Veterans Association
-Uppity Disability dot Net
-ILUSA.com

for more detailed info check out Sunrise Medical's website.

More Info soon.

Happy 25th ADAPT!!!

(note - just a press release - we're bummed we cant make it to the events, tho adapt25.org may have more historical stuff.

Come to think of it, I *was* at ADAPT's 20th anniversary. I should probably post pics of that tomorrow. But my schedule tomorrow is gonna be tight. I'll work on that.

Washington, D.C.--- 25 years ago, Rev. Wade Blank, and Mike Auberger, Co-Directors of the Atlantis Community, a Denver Center for Independent Living, proclaimed their intent to take their local activism, which used direct action to bring about positive changes in the Denver community, to a national level.

Looking at the rag-tag group of two dozen people with disabilities that had shown up for a protest to make Denver mainline buses accessible, nationally renown organizer Shel Trapp shook his head and said "It will never happen." Yet, over the next 7 years, these three men and that rag tag group, along with dozens more that came to join with them each year, achieved exactly that outcome by forming ADAPT, then known as Americans Disabled for Accessible Public Transit.

25 years later, over the course of a week, from April 26 to May 2, in Washington, D.C., over 1000 people with disabilities and supporters from all over the country will participate in a variety of events to remember ADAPT's humble beginnings in 1983, celebrate the growth and progress of the disability rights movement during the past 25 years, and set the stage for continuing activism in the years to come.

ADAPT's humble beginnings grew into a national grassroots activist movement that has changed the face of the disability rights movement. ADAPT has been memorialized in photos by Tom Olin taken at ADAPT actions over the years. Olin's photos of ADAPT have appeared in the Smithsonian, are part of the National Civil Rights Museum, and show up continually in national press and media, in scores of books, on posters, and in every corner of the world wide web.

Events occurring during the ADAPT 25 anniversary celebration week include:

* A Sunday, April 27 Fun Run/Roll around Upper Senate Park in Washington, D.C. that is open to the public and serves as combination fundraiser and celebration kick-off.. The National Fun Runner/Roller is Marca Bristo, Executive Director of Access Living in Chicago, IL, and one of the founders and former president of the National Council on Independent Living, and Chair of the National Council on Disability during the Clinton Administration.

* Three days of activism throughout the Washington, D.C. area on April 28-30, including the announcement of the 2008" Ten Worst States in the Provision of Home and Community-based Services."

* An April 30 evening showing at the Holiday Inn Capitol Hotel of "When You Remember Me," a made for TV movie starring Kevin Spacey, Ellen Burstyn and Fred Savage. The film chronicles ADAPT co-founder Wade Blank's work freeing young people with disabilities from a Denver nursing home...work that led into the creation of both Atlantis, and then ADAPT.

* A May 1 daylong celebration at the Holiday Inn Capitol Hotel that will include multi-room historical exhibits, multi-media presentations, StoryCorps, The Road to Freedom Bus, an anniversary cook-out and an evening retrospective show with live music, and remarks by former Rep Pat Shroeder (CO) and ADAPT activists from around the country.

The public is invited to participate in the Fun Run/Roll on April 27 or sponsor participants (www.adaptfunrun.org), and to tour the exhibits at the Holiday Inn Capitol Hotel on May 1.

ADAPT crawled up the Capitol steps in 1990 to help push the Americans with Disabilities Act (ADA) toward passage when it was dangerously bogged down in Congress. When the ADA passed, lifts on buses were the first change required. ADAPT has assured that over-the-road buses, along with local transit, had to comply with the ADA.

ADAPT is credited with being the reason for the 2005 passage of Money Follows the Person legislation that allows people with disabilities in nursing homes to move back into the community with their funding "following" them to provide services and supports in their own homes. Over the years ADAPT efforts nationally have been largely responsible for the federal government moving to "rebalance" the nation's long-term care funding from being overwhelmingly institutionally biased to a system that will equally support home and community-based services.

ADAPT is currently working for passage of the bi-partisan Community Choice Act (CCA) (S. 799, H.R. 1621), which would completely remove the Medicaid institutional bias and allow people to choose to remain in their own homes with the services and supports they need rather than being forced into nursing homes and other institutions in the first place.

People interested in learning more about ADAPT and/or the 25th Anniversary events can go to the websites above, or call 512-442-0252, or 303-733-9324.

Hockenberry New show on Public Radio

Hi Folks-

John Hockenberry has been a busy guy - He spoke at the MIT museum
earlier this month on human augmentation, completely redid his
website, has a twitter channel (twitter.com/JHockenberry) is raising 4
kids, and he's returning to his roots, starting a national morning
talkshow carried by WGBH and wnyc and others. It starts tomorrow at
like 6 am (no joke, really, who is up at 6 am...and you need to switch
stations if you stream it as there is a second hour from 8-9 (check
out www.thetakeaway.org for more detailed info. So why should you
listen.

Well, pull up a chair, how long do you have...

John Hockenberry is the damn savior for disability media. (maybe
savior is too strong a word) John Hockenberry is a guest lecturer at
the MIT Media Lab (The only program I'd consider attending in the Ivy
League.) John has won more Emmy's and Peabody's than Bill O'Reilly
(and totally stiffed O'Reilly by not going on his show earlier this
year.) Hockenberry writes (with some prodding) amazingly important
essays on disability rights and definitely supports the activist crips
out there. And besides all of that, He actually sounds like he knows
what he is talking about, even on public radio - that's a good thing.
I can't promise you he'll cover the Adapt 25th anniversary that starts
suspiciously right around the start of his show. Heck, 99% of you will
probably have to catch it online (thank god for winamp and wifi, and
podcasts) But Hockenberry's been at the forefront of new media when
he was hosting Heat in the early 90's (and gave some unknown singer
songwriter, Shawn Colvin, her first national radio spot and had
seminal band Uncle tupelo in his studio, along with Billy Bragg.) Who
knew Uncle Tupelo would break up and form wilco and billy bragg would
record 2 albums with them. It probably had NOTHING to do with
Hockenberry, but hey, it could have. You can actually hear Heat at
www.prx.org

Hockenberry had this cool indie film intellectual show called Edgewise
(which was 20, not 10 years ahead of it's time,) and he had some folks
from ADAPT on, and Vic Chesnutt, (sorry, i just realized how warped
say, a NSCIA conference could truly be if Vic ever gets into the Hall
of Fame, if you have no idea who vic is - wikipedia him) He had
Jessica Yu, breathing lessons director, oscar winner, on as well
(altho, it was WAAAY after I got a print interview with her.) and it
was cancelled, and some anonymous dork was asked to spread the rumor
of it's cancellation before people on his crew even knew.

We'll just skip Dateline, tho his ADA special was cool.

But TOMORROW marks a whole new beginning for the ways in which
supposedly people can interact (we aren't talking Sean Hannity passing
George Stephopolis bad questions about Bill Ayers) with an interactive
website - and if that doesnt impress you - he totally redesigned his
blog (www.johnhockenberry.com) with a couple new videos (tho - you'd
think he's at least have his own youtube channel. sheesh. MIT
Disguished media lecturer who ... nevermind, I'm being elitist.)

And if your on Facebook, there is a un-official fan site called
Takeaway Fans Unite! - word has it Mr. Hockenberry even joined the
group - so you should too. and Heck, add me as a friend.

So Happy 25th Birthday ADAPT. celebrate by watching the Takeaway...

www.thetakeaway.org
www.wnyc.org

free (and shameless) public relations promotion/ obsessive fan boy
email/ blog courtesy of Mike R.

Medicaid and Power Chair payments...

This landed in my email box with a note to fwd widely, and this does have some real implications to the wider disability community - including folks who do not qualify for medicaid or Medicaret. As indicated below - Many private insurance companies use the Medicare funding numbers to set their own reimbursement rates. Some states (I am not exactly sure of the status in Maine) are changing the requirement for wheelchair lifespans (The normal time that a wheelchair should last from 5 to 7 years,) and that change will very likely also be a change to private insurance. People are already using hand me down chairs or technology to get mobility issues covered. While the wheelchair model isnt really scalable to other forms of DME due to the funding structure of repairs and the way that's figured into the retail cost of the a wheelchair, it's an unsettling proposition.

So if the rising cost of gas isn't an headache enough, one more thing to worry about.

MJR

POWER WHEELCHAIRS – A REALITY CHECK:

Okay, so what’s the reality concerning your next power wheelchair? What
changes has CMS made this past year and a half? It all began November 15,
2006, but really started Jan 2007, when all power wheelchair payments made
by Medicare were reduced by 27%.

Now starting July 1, 2008 the same power chairs will be reduced again by
19%. This additional payment cut by CMS is from Medicare’s National
Competitive Bidding (NCB) program.

NOW TO THE REALITY CHECK:

If a consumer received a chair back before these dates a supplier would have been paid, let's say $8,000.00 for example. For a consumer to be given that same chair today the dealer will receive $5,840.00. Okay now, after July 1st because complex rehab was competitively bid - the amount will go down to $4,730.40.

So the BIG question is ... Will a consumer get the same quality chair as your last one? Well...when you look at the cold hard economics ....it is impossible to imagine. Most likely you will be provided with a chair of lesser quality and fewer features because of the dramatically reduced payments. How can a supplier purchase, service and provide to a consumer the same quality chair and features as before with these dramatic reimbursement reductions. Consumers will get a wheelchair but it will not be comparable.

While Medicare went into competitive bidding saying that consumers would receive the same quality products and services, it's not possible. With 2 serious power wheelchair reimbursement cuts since January 2007 amounting to over $3250.00 on a basic $8000.00 chair it’s not likely.


THE DOMINO EFFECT: So who does this affect? Just Medicare, right? NO
...WRONG!

PRIVATE INSURANCE:

It's important to know ....all other insurers mostly base their payments off of the amount that Medicare pays. Which means the dealer will be receiving less that the $4,730.40 from even private insurance companies. Again, consumers will receive products that will not be of the same quality and features as they received previously from Medicare or Private Insurance.

NOW WHAT ABOUT DUAL Medicare and Medicaid?

Are they hurt by this program? YOU BET!

Medicaid is different in each and every state, however; few if any pay the Medicare price and in most cases they can not pay more than the amount that Medicare pays. SO.... Read below where the head of Medicaid policy in Ohio says they will set their payment at about 20 to 25% below the Medicare rate!!!! Now the dealer will receive for the $8,000.00 chair of a year and a half ago a grand total of $3,547.80 as full payment for the item.

Remember the "DUAL " Medi-Medi can not pay nor can the dealer collect money
from that person and must accept this amount as payment in FULL!

Under the Medicare program a consumer (NOT A MEDI-MEDI) can choose to do an upgrade and pay for "deluxe" features and options€.

So what this wonderful program has done is to "Cost Shift" to the consumer for payment if they want to receive the exact chair they have today or, they must accept a much lesser chair.

CONCLUSION:

Wheelchair technology advancements over the past 2 decades have made incredible leaps offering consumers amazing functional features and options allowing them to live a more independent, productive lifestyle. Medicare provides consumers only the features and options that are medically necessary for them “In The Home”. With the 2 new reduced complex rehab payment rates consumers will receive inferior equipment and decreased services than previous wheelchairs. We are at a serious turning point for
the worse. This is criminal. Equally bad is that other third party insurers base their payment off of Medicare. Is it time for you to voice your concern????

NEXT STEPS: What can you do?

(edited as some events have passed)

Support HR 2231, http://www.govtrack.us/congress/bill.xpd?bill=h110-2231

New Obama video everyone should see once...

He's coming to Maine Saturday (Bangor) Anyone wanna go???? Given that several key disability leaders have endorsed him, I'm throwing my support behind him. And the Song ROCKS!

or maybe it's "please DO taze me?" Musings on the JRC Hearings

Score one for effective PR when Brandon Sanchez was brought in front of the committee (like an animal on exhibit at a zoo, Which was gut wrentching because, well, I know folks like Brandon,) and yeah, his behaviors were a bit disconcerning, but he was not wearing the GED system, so I figured at least the hearings were positive in that the student who led Matthew Isreal to create the GED was, for eight or so hours, not wearing a GED.

I wasn't prepared to see this and see an similar photo on the cover of the Boston Globe today. It's a compelling photo, but I feel, being there, it was compelling for a whole host of different reasons than seeing it on the front page today. It's sad that the reality as a person at the hearings, essentially, Brandon was kept out of the hearing room until his uncle decided to put him on show as if he is an exotic animal. "The hardest to treat, the GED saved his life" his uncle, a member of the legislature who has stopped previous anti-aversives legislation, said. I thought he looked scared. He walked in a sullen way, head down, like the other children described in the Mother Jones article or other published reports of the treatment at JRC.

As a person who has been labeled a "behavior problem" who "probably won't finish high school" let alone college, I felt a sense of "wow, I'm lucky I had a mother that refused to even consider a residential placement." A full decade after I got my degree in English, and Disability Studies, I'm glad JRC's "advertisements" weren't big in the Lewiston School System.

1-14-08 Blogging Against Aversives

The Massachusetts legislature is hearing 4 bills specifically against JRC, a controversial facility that uses aversive therapy to treat autism and much lesser antisocial behavior. Mother Jones wrote an amazing story. JRC may make headlines, but in schools across the country time out rooms are used far too much, ed techs are asked to do "take downs" on students, and while some states have great laws regulating their use in schools, who knows what happens in non-school settings, from the "difficult" nursing home patient, to a developmentally disabled adult who might be frustrated and unable to express his thoughts fully. It just seems that while it is necessary to prevent someone from hurting themselves or others, it is a slippery slope to where it seems physical abuse could potentially occur (in any facility! staff and people with disabilities are both in danger of getting hurt), and it's always nice to think about realistic alternatives to aversive therapies.

Here is a list of bloggers who plan in writing stuff - email uppitycrip (((at))) gmail dot com if there is any you find i may have missed.

The Furnace of Doubt

Not Dead Yet

http://stirthis.blogspot.com/ - Veralidaine

http://www.crip-power.com - Mscripchick


http://www.livejournal.com/users/trinityva/ - Trinity

http://thegimpparade.blogspot.com/ - Kay Olson

http://lastcrazyhorn.wordpress.com - lastcrazyhorn


http://mybignoise.blogspot.com/ - Cilla

http://mommydearest1514.blogspot.com/ - Mommy~dearest


http://qw88nb88.wordpress.com/ - Andrea

http://disstud.blogspot.com/2008/01/whatever-works-is-not-free-pass-for.html - Penny L. Richards

It's 2008, Thank God.

I was very ill for most of December, at times terrified and panicking about pain, quality of life issues, and was really fearful for the future, though things seemed to get tremendously better once I got surgery to get rid of the pain. Somehow, now I'm much better, though today I'm in a bit of pain. I'm working on a few new projects, some that will be announced soon. John Hockenberry's article on the demise of corporate television, NBC especially, is getting HUGE play in the bloggosphere, and his new show, Billion Dollar President, is really interesting, innovative, and worth a listen to.
Currently I'm really interested in the anti-aversive legislation pending in Massachusetts, Looking at open source development and media, and open source assistive technology. I am thrilled Barack Obama won Iowa,and the Radiohead album is still pretty incredible.

be well-

Mike R.