Valued Program Endangered by Budget Cuts

AHCCCS Freedom to Work (AZ’s Ticket to Work)

Health Care Program for Arizonans with Disabilities that Work

Let us be tax payers, instead of tax takers!

Give Arizonan’s with a disability a hand up, not a hand out - Retain the AHCCCS Freedom to Work (Ticket to Work) health plan. It allows Arizonans with disabilities to work their way out of poverty, maintain vital AHCCCS eligibility until they can get their own health insurance while paying a monthly premium and sharing their healthcare cost.

AHCCCS Freedom to Work can help people earn their way off public assistance rolls completely. Support self-sufficiency!

Why do we need AHCCCS Freedom to Work?

• Arizonan’s with disabilities are the poorest of the poor.

§ SSI beneficiaries can only get up to $674/mo.(2009)

§ SSDI beneficiaries get an average monthly benefit of $1006) – 2006/07 Social Security Admin.

• Many of the 192,429 working age Arizonans receiving either Supplemental Security Income (SSI) or Social Security Disability Insurance living in poverty, could work if provided necessary health care assistance.
• Social Security rules offer new federal work incentives to work to help beneficiaries work their way to self-sufficiency.
• Without this program, few people with severe disabilities on AHCCCS will be able to take the risk of losing necessary healthcare coverage to try working again.
• Young people with disabilities will face a future of poverty and dependency because without necessary healthcare, they will never be able to take advantage of the other work incentives available.

This is a moment in history for individuals with disabilities who can and want to work.

Many people with disabilities, ages 18-64, and on SSA benefits want to work but fear losing necessary health care. AHCCCS Freedom to Work is key to removing healthcare as a barrier to employment. The Ticket to Work & Work Incentives Improvement Act of 1999 offered states options to create a “Medicaid Buy-in” program that matches state funds ($2 for $1) to provide expanded Medicaid (AHCCCS) eligibility for people with disabilities who work. Arizona implemented our “Buy-in” program in January 2003 (99 legislators voted “yes” in 2001.)

Who is using the AHCCCS Freedom to Work:

· 1,049 (10/09) working Arizonan’s with disabilities are able to work, maintain health care while paying in a share of the cost through monthly premiums. Enrollment has been stable for the last year.

· Most had already been on AHCCCS/ALTCS previously.

· Most of these individuals are willingly risking the loss of their Social Security cash benefits, because of the commitment Arizona made to them in 2001 that they could keep their AHCCCS health insurance if they are working.

Benefits to all Arizonans:

• 1,000 individuals work @ $20,000/year (single person income) = $20 million in wages spent directly in Arizona businesses.
• 1,000 individuals (taking a standard deduction) = $360,000 in Arizona state income tax.
• Anyone can acquire a disability anytime!

For more information contact David at ABIL 602-443-0723 or davidc@abil.org

(11/9/09)

The AHCCCS Freedom to Work = Employment = Self-Sufficiency = Economic Stimulus!

Issue: The Legislature is meeting this week to close the budget deficits for 2010 (this current budget year) and 2011 (starts July 2010.)

One program they are talking about eliminating in 2011 is the AHCCCS Freedom to Work (FTW) health plan they call “Ticket to Work”. Attached is a fact sheet on the FTW program.

What you can do to protect this important program:

Contact your legislator at www.azleg.gov (you can find your legislators here too)

· If you email: Put your name and address at the top of your email. Use your subject line to say: Constituent – Protect Ticket to Work AHCCCS plan in 2011!

· Ask them to fight to protect funding for this program that helps people with disabilities work

· Suggest they eliminate some of the tax credits we can not longer afford, such as country club memberships

· Tell them your story if you are on the FTW program – briefly why it is so important for you

You can make a difference! Don’t let them make decisions without you! Nothing about us without us!

As If I Needed More Motivation

I woke up this morning unsure that I can truly finish this race. My 50 pound wheelchair is feeling heavier and heavier each time I go out to push. My shoulders are aching and my blisters have blisters. I can barely do the things I need to day-to-day because my hands and shoulders hurt so bad. Not a good thing in a wheelchair user.

This "secret" was posted at PostSecret today. It felt like a sign, a reminder that this marathon is bigger than me. I am humbled and remotivated.

Researchers at the Reeve-Irvine Research Center are ready to begin Human clinical trials in a treatment for infants with SMA1. I have followed the progress of these trials for selfish reasons;. This treatment, once proven successful, will be used to return function to people with chronic spinal cord injuries. People like me and so many others.

If the people of RIRC are willing to dedicate their lives to figuring out how to help babies with SMA1 and how to restore function in people with chronic spinal cord injury, surely I can give a few weeks of pain, sweat and a little blood to support them.

If you're moved by this, I hope you'll participate in whatever manner you can. Of course a financial donation is great but there is so much more that can be done.

Please, sign the petition for SMA while you're at it, sign the petition for spinal cord injury research. Both will only take a second of your time.



And, if you're able, please consider a donation to my marathon effort. All funds go to the Reeve-Irvine Research Center where one day, scientists will announce treatments for both of these horrible conditions.

Area Martial Artist Sits Down For Those Who Cannot Stand Up.

FOR IMMEDIATE RELEASE


Area Martial Artist Sits Down For Those Who Cannot Stand Up.

Accepting the challenge of a student, Sr. Master Mark Kaup-Lee will compete in the PF Chang Rock N Roll Half Marathon in a wheelchair. A 7th degree black belt and owner of 5 area martial arts academies, Kaup-Lee was challenged by his student, Jennifer Longdon; herself paralyzed, to complete the 13.1 mile race as she will; in a wheel chair.

The pair will raise money for spinal cord injury research. Longdon, an area martial artist and student of Kaup-Lee’s, sustained her spinal cord injury more than four years ago in a still-unsolved shooting. Longdon was riding in a vehicle driven by her fiancé, David Rueckert, when the pair was shot multiple times by an unknown assailant. Rueckert was shot in the head; Longdon was shot in the back.

Kaup-Lee was helping Longdon with her training when she groused “You think it’s so easy? You strap 50 pounds to your back and race 13 miles on your hands.” Kaup-Lee in that instant agreed. “It’s not the same for me.” Kaup-Lee explains “I have control of my balance and core muscles in a way that a paraplegic like Ms. Longdon does not. But it’s still pretty challenging.” Kaup-Lee’s first taste of the difficulty faced by those with spinal cord injuries came when he was training with Longdon one morning. “He flew up a hill while I chugged along behind. When he reached the top I told him to try it again without using his abs. It was a little more challenging the second time.” Longdon teased.

While wheel chair competitors are not, in themselves, new or noteworthy; Kaup-Lee and Longdon will not participate in the racing chair division but in the standard division. “We’ll be using regular wheelchairs weighing between 40 and 50 pounds instead of the lighter racing chairs.” Kaup-Lee explains. “Ms. Longdon cannot get in and out of the racing chair any more without assistance.” Kaup-Lee adds “Why do it if it’s easy?”

Of course, they are competing in their fundraising totals as well as the race. The pair will donate all proceeds to Research for Cure, a 501(c)3 Not-For-Profit organization that raises funds for the Reeve Irvine Research Center.

Donations can be made through http://masterlee.chipin.com/research-for-cure, or http://jenlongdon.chipin.com/research-for-cure or checks made payable to Research for Cure may be sent to Lee’s Black Belt Academy, 715 W Baseline Rd Tempe, AZ 85283. Note “Lee” or “Longdon” in the memo.

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Racing for a Cure

Dear Friends,

A year ago I began a fundraising effort to personally raise $1,000 for spinal cord injury research. I challenged 10 friends to do the same. We’ve had varying levels of success. First, thanks to those who elected to participate. Thank you to all who contributed and very special thanks to Susan & David, Kumar, Marty and Richard for reaching the goal with individual pledges. My own efforts have fallen short due in large part to a very serious illness this past spring that nearly took my life. I am fully recovered and back on track.

On January 18, 2009 I will push my first half-marathon (the PF Chang Rock and Roll Marathon), all 13.1 miles of it. It’s hard to believe that just 4 months ago, I could not push to the mail box and a trip around the block was impossible.

So I am begging for sponsors. Will you consider pledging? And, if you act now, I’ll give you the 1/10th of a mile gratis. :) $5 per mile is just $65. $10 a mile is fantastic! “Flat” pledges of any amount ($25, $50, $75 or MORE) are also welcome. I am grateful for whatever you can pledge.

This has been a year of great victories and deep loss. Just days ago, another friend died a death he would not have faced if not for his spinal cord injury. The shock and grief have been a mental setback. I’ll be racing for those like Patrick who have alternatively pushed me and held me up when I could not.

Every dollar raised will go directly to the researchers at the Reeve-Irvine Research Center who work to treat and cure a host of neuro-degenerative disorders. There have been great strides made since my visit to the lab almost a year ago. I am more confident than ever that we’re on the right track.

I’ll even be so bold to say that I believe that the next 18 months will see the start of human clinical trials and breath-taking announcements as we move closer and closer to a treatment for neuro-degenerative disorders including spinal cord injury.

To contribute, either e-mail me with your pledge challenge or make a contribution here. http://jenlongdon.chipin.com/research-for-cure. I'll update you on my results ASAP following the race on January 18th.

Thank you for your continued support. I honestly would not make it without the help of my friends.

With love and gratitude,

Jen

Thoughts on Being "Disconnected" -- Amanda's Voice

I've met some of the most incredible people since my injury, people I would never have met otherwise. My life is so much richer for knowing them. Amanda is one of those people.

I think I would have liked her no matter what. Amanda is an intrepid spirit. She's very smart, well-read and well-traveled. She's introduced me to Russian art and a new author. She teaches me so much and she's half my age!

Amanda was injured on Christmas day two years ago. She was snowboarding and struck a piece of grooming equipment that wasn't supposed to be there. I can only imagine what that day must have been like for her and her family.

Amanda sustained the most devastating spinal cord injury possible. She is now a C-2 quadriplegic. She requires a respirator to breathe. She depends on other adaptive technology to manage her life; voice activated software allows her to use her computer (she's diagnosed and fixed my computer during a chat session), maneuver her wheelchair and operate the lights and doors in her home. She's headed back to school to finish her post-grad program. She's one of the most grounded people I've ever met. I have no pity for Amanda; only profound admiration.

I am not the writer that Amanda is. I'm struggling to find the proper words to introduce her here just as I struggle to find words to describe this new life. I am, however, smart enough to know when I should get out of the way and let someone else talk. Following is a recent entry from Amanda's blog. It says everything. I begged her to allow me to share it. She was gracious enough to agree.

So, with permission, here's Amanda....

Thoughts on Being "Disconnected"

I had a conversation with somebody recently and they asked me what one word I would use to describe myself. It’s not very hard for me to think of an answer. That word is “disconnected.”There is the obvious physical disconnect. My day seems to be a never ending routine of somebody touching or otherwise manipulating my body for 100 different reasons. Feeding me, turning me, stretching me, bathing me, keeping my lungs clear and on and on. It never ends. Once one thing is done there is little reprieve until the next. Everything is scheduled and charted. Micromanaged. In reality my life has become a series of checklists and medication sign off sheets. Nothing can be forgotten. There is very little room for compromise or rescheduling.

Some of it happens when I am sleeping. For the most part though, I am awake. And when I am awake all this takes on a surreal feeling. I know this stuff is being done to my body because I lay there or sit there and watch it. But for the most part I feel very little of it. And for what I can feel, the sensation is either so impaired that unless I am watching myself being touched I can’t be sure what is going on. Or there is pain. Pain that doesn’t always make sense and can drive me to want to die on the spot. But that’s an entirely different topic.However, I am for the most part detached from it all. Disconnected. It might as well be somebody else lying on the bed and I am watching them having things that look both undignified and uncomfortable done to them. Dignity went out the door long ago. I don’t even know anymore what that word means when it pertains to me and my self-image.

This is a good day. On a bad day my body spasms like mad or otherwise seizes up. It shakes, thrashes, clenches, freezes. Again I watch it with detachment. It’s my body trashing around but it doesn’t feel like it. Mind and body are disconnected.

Then there is the emotional disconnect, which is I believe harder to deal with. I try to make myself feel better by repeatedly reminding myself “things could be worse.” And it’s true, they could be much worse. Some people don’t get this when I tell them that. For them my life is about as terrible one as they can imagine. It sucks there is no doubt about that. But I have no pretense that my life is as bad as it gets. The truth is though, regardless of my understanding of this, it doesn’t really make things any easier to deal with. The reality is that having to depend on somebody else for essentially everything is humiliating, exhausting, and although this might make not make a lot of sense, isolating. I have people around me 24/7. If not right in the same room then within earshot. Which means no closed doors and somebody popping their head in the room every few minutes to make sure the ventilator circuit hasn't popped off and that I am still breathing. But even with that, I feel alone, cut off, and not part of everything else going on.

I can do things. More things that most people might imagine. But they all involve somebody else doing something to enable me to do whatever it is I can do. Setting up my laptop so I can use it, putting me in my wheelchair so I can move around, even something as apparently easy as using a voice activated system to turn on lights requires somebody attaching my speaking valve to my tracheostomy tube when I wake up in the morning so I actually have a voice. The effect of this is that while I cherish what little independence I can have, it is always bittersweet because that even that independence is dependent upon others. It wears me down to continually ask for things. Many of those who function in a caregiver role have become very good at anticipating my needs. This makes things somewhat easier. But often I just skip over doing something because I am too tired to ask. This makes me feel disconnected from myself and from life. That might not make sense but that is how it feels. It is an incredible mind fuck to see a glass of water on a table a few inches from you and not be able to do a damn thing to drink it unless you ask somebody to come and help. But that glass of water is pretty much a metaphor for a thousand other things. All around me, out of reach, disconnected.

More later.
__________________

Our Trip to RIRC - Correcting an Oversight.

Someone pointed out that I shared the report from our trip to Dr. Hans Keirstead's lab at RIRC with everyone in the world; except this blog.

So, to correct this oversight, the report in all it's 13-page glory is attached below along with the introduction and summary. It was inspiring to visit with everyone at RIRC. They are certain and steadfast in their work. Quite a juxapostion between this post and my other recent post on suicide.

For many with severe disability the two ends of this spectrum are so much closer and entwined than others might think.

Remember, the report below was created for an audience of well-informed people with SCI. If you have any questions, if any acronyms are troublesome, let me know and I'll clarify. Happy reading.

__________________________

Attached is the report of our trip to the Reeve-Irvine Research Center and Dr. Keirstead’s lab. It is 13 pages long and quite detailed. I’ll give a bullet point summary at the end of this post.

This has been a labor of love. Brian needs total credit for the report. My original summary of the visit was a chatty narrative. Brian’s pre-med background made him perfect for reorganizing and more thoroughly reporting the science behind the discoveries. The final report is 90% Brian, 10% me. No wonder I keep scrambling the letters of his name and typing “Brain” LOL. As you read this 13-page missive, bear in mind that Brian is C-6/7, he typed the entire report one key at a time with a pencil tip. That’s how important this message is to him -- and to me.

I hope I speak for everyone on the lab trip when I say that we’ve been riding a high ever since we stepped into the RIRC. Once again, I found myself holding back tears of joy and excitement during our briefing. Sitting at a table with Maura Hofstadter and Hans Keirstead as he casually yet earnestly lays out his plan for “curing” people with SCI is electrifying.

RIRC hosts an annual meeting that is open to the public. This year’s dates are March 11 -13. For everyone west of the Mississippi that can’t afford a ticket to DC for W2W, try to make this event. It’s a fabulous opportunity to meet Hans, Maura and other scientists working on our behalf and hear first-hand about their work.


There’s a quote that I used to have pinned to my bulletin board before I was injured. It seems apropos now: "At first people refuse to believe that a strange new thing can be done, then they begin to hope it can be done, then they see it can be done, then it is done and all the world wonders why it was not done centuries ago." Frances Hodgson Burnett.

We’re just about there, to that place where everyone will wonder why it took so damned long to figure this thing out. In a very short time, the Kevin Everett’s of the world (people who regain complete function after a devastating SCI) won’t be news. It will be a wonderful day when there are fewer and fewer new members to CareCure.

I, like many others here have worried that us “chronics’” were going to be forgotten once “acutes” were treatable. I don’t worry about that any more. Twice I have sat with Hans Keirstead and looked into his eyes as he talks about treatments for chronics. It won’t matter how old the injury is, Hans is known to say. Even if our injuries are ten, twenty, forty+ years post, this treatment will return function.

I find myself daydreaming of hiking my favorite mountain again. I’ve been looking at cute shoes. I’ve been dreaming again; that’s something I shut off with my injury. I have HOPE. Another emotion I have not allowed post-injury.

Giddy, giggly HOPE -- backed by facts.

I will walk again. I will pee on my own again. I will feel the sand between my toes again. And, I will, as I have always dreamed, dance DANCE DANCE at my son’s wedding.

Here are those bullet points….


* The Reeve-Irvine Research Center (RIRC) has treatments in development that address all 3 phases of SCI; acute, sub-acute and chronic. Since SCI represents a population too small for drug companies to consider profitable, RIRC scientists, like Dr. Hans Keirstead, find characteristics that SCI has in common with other conditions. By grouping these conditions together, 2 important goals can be achieved for people with SCI:
o Create a large enough population to be profitable to big pharma;
o Shorten the trial length of each treatment. Instead of following a person with SCI for 10 – 20 years or more for data, they can use shorter trials in these other conditions.

* Safety studies with IP10 antibodies in ulcerative colitis should report soon. FDA approval for UC will allow this drug to be used off-label in Acute SCI. In animal models, as much as 70% return was noted when IP10 antibodies are given within 6 – 10 hours of SCI.

* In early 2008 Geron is planning to file an IND with the FDA and undertake safety studies using differentiated stem cells that form oligodendrocytes (these remylinate the spinal cord). The Phase I trial will be for people with new SCI, 1-2 weeks post injury.

Multiple studies addressing chronic SCI are underway at the RIRC:

* Animal testing with human embryonic stem cell derived motor neurons is underway. Human clinical trials await FDA approval – those discussions begin January, 2008. The first trials will likely be for infants with SMA-1, and then adults with end-stage ALS. This treatment is also for chronic SCI, without limit to the age of the injury. Decades-old SCIs may benefit from the treatment. The Geron experience taught Dr. Keirstead and team, which is moving the hESC motor neuron therapy forward, a great deal about the FDA approval process and they have been able to streamline their processes to move through the FDA system faster. This will be beneficial to the chronic trials.

* RIRC Director, Oswald Steward, is currently testing FDA approved drugs in chronic cervical SCI models. These drugs were developed for other applications, like heart disease and cancer, but have been found to be neuro-protective in fish models. Dr. Steward is testing 7 drugs now, but has many more ready to go. If any of these show efficacy in rat models, we can very quickly, in a matter of months, go to humans in a Phase II trial because the FDA has already determined them safe.

* Dr. Kim Anderson works with care issues such as sexual dysfunction and the metabolic effects of SCI that make us more prone to diabetes and other conditions. She discussed her current pilot study regarding diabetes in the SCI population.

* We have often talked about how funding is THE obstacle to curative therapies. Dr. Keirstead was careful to point out that funding is not the only issue. FDA approvals also play a pivotal role in how fast or slow a therapy will be tested.

* If FDA approvals go as planned, we can reasonably expect chronic SCI clinical trials in humans in 2-3 years with treatments potentially available in as few as 5 years. These predictions are dependant on several factors: funding; FDA approvals and efficacy in humans to follow previous animal models.

* www.researchforcure.org accepts donations for RIRC and Dr. Keirstead.

* Hopefully, everyone reading this will be inspired to raise funds and awareness for SCI research. Tania Cusack and Dr. Maura Hofstadter are the contacts at RIRC that can help with fundraising and research questions.

Voter in a Wheelchair

For the past two years I have worked with the Maricopa County Elections Department to help train election workers how to best assist voters with disabilities. I have tried to make the point that for some getting out and voting is monumental.

Recently I saw this commercial that makes my point far better than my words ever will. I am so impressed that this company used an actress with a disability and created an honest, authentic portrayal of a slice of life in a wheelchair. Notice the everyday obstacles; weather, transportation, thoughtless barriers to be overcome just to participate in ordinary activities.

Kudos to Liberty Mutual for such a bold decision.

Kudos to Maricopa County Elections Department for their efforts to make voting possible for people with disabilities. I am so very proud of the work being done and for those within the Elections Department, especially Tonia and Tammy who have patiently, tirelessly championed this program.