Tag Archives: Spinal cord injury

The AHCA and Paralysis

 

We are pleased to publish this guest post on our SPINALpedia blog by the Outreach Team at Disability Benefits Help.

On May 4th, the American Health Care Act, or AHCA passed in the House of Representatives. This new healthcare bill is the first attempt at repealing the Affordable Care Act. The AHCA has some sections that are concerning for people with paralysis or another spinal cord injury. Here are some ways the AHCA might affect you and your family if the bill does pass as-is:

1. You might have higher premiums

While the AHCA assures us that everyone will have access to health care, the MacArthur amendment does allow states to file for a waiver that exempts it from some components of the Affordable Care Act. With a waiver, insurance companies in some states could charge people with pre existing conditions significantly more than healthier young adults.

So how much would paralysis cost? It’s hard to know exactly how much your premium could rise, but paralysis would without a doubt be considered a preexisting condition. The amount your insurance might rise would depend on your age and the state where you live, but this interactive map can give you some kind of idea how much you might be affected before paralysis is factored into the equation. Some people see the cost of health insurance rise by $40,000.

What’s more detrimental for people with paralysis or another catastrophic spinal cord injury is the MacArthur amendment allows insurers to put lifetime caps on those with preexisting conditions or disabilities. A catastrophic injury like paralysis can cost over $5,000,000 over someone’s lifetime. A lifetime cap would leave millions of people with paralysis without insurance.

2. Funding would be allotted for people with catastrophic injuries, but the AHCA has not given enough.

The AHCA includes high-risk pools for people with disabilities who are denied insurance, such as those with a spinal cord injury. The AHCA set aside $130 billion over the next decade to help fund these pools and get everyone insurance, but this plan would only work if a handful of small states file for the MacArthur waivers.

Some experts believe $130 billion is not nearly enough funding. Conservative estimates guess that the pools will need $25 billion per year to cover everyone in need. This means the pools need an additional $100 billion to work as planned.

3. If you or someone you love is in an assisted living center, you may lose insurance.

One of the biggest changes the AHCA looks to make is cutting funding to Medicaid. Many people with paralysis live in an assisted living center, which can cost over $100,000 per year out of pocket. Medicaid supports millions of people with disabilities and makes specialized care possible. Up to 60% of people in assisted living centers and nursing homes are enrolled on Medicaid.

Currently, Medicaid is an entitlement program. This means states receive funding as needed for people who qualify. As the AHCA stands now, Medicaid would become a grant program. This would again potentially impose lifetime caps, which is simply not an option for someone with a catastrophic spinal cord injury due to the enormous costs of health care.

What can we do?

The most important thing to keep in mind is that the AHCA is not law yet. In fact, the Senate has expressed that it wishes to rework the health care bill to make it better for all Americans.

You can call your local Senators to tell them to vote NO on the AHCA. Find the contact information for your local Senators here and call them directly.

The AHCA is completely unacceptable for millions of Americans, but we can fight to make health care accessible for everyone.

This article was written by the Outreach Team at Disability Benefits Help. They provide information about disability benefits and the application process. To learn more, please visit their website at http://www.disability-benefits-help.org or by contacting them at help@ssd-help.org.

SCI Superstar: Riley Poor

Riley Poor is a lifelong professional in the world of action sports filming. In his previous AB-life, he was a film director at Red Bull capturing footage of skiing, snowboarding and free-ride mountain biking. “It was the type of dream job that few are lucky enough to encounter,” he gushes.

Post-injury, however, Riley had to re-tool his career, but he’s been able to stay true to what he loves. From becoming an executive producer at Nike to writing a new blog in which he and his girlfriend share their life together in Portland, Oregon, Riley has made an impressive transition since becoming paralyzed. Read on to see exactly what we mean.

Why He’s Fearless

In high school, Riley, now 34, began filming action sports, and he knew right away it was something he wanted to pursue. His career in the industry took off, allowing him to have an amazing professional life in his early 20s. But in 2009, everything changed when Riley jumped into a shallow pool, breaking his neck. “I was jumping off the edge of the pool doing a backflip and a friend jumping in next to me pushed me and stopped my rotation,” he says. “My head lightly clipped the bottom of the pool, and all the angles were just right to dislocate at C5/6.”

Knowing plenty of people with SCI before his injury because of his work in extreme sports, Riley was more prepared than most for his new life with a SCI. “I was surprisingly at peace with my new reality and somehow knew that this was a test I was meant to take,” he says. “I also knew enough quads and paras to know that I would never be the same.”

Once he was discharged from the ICU at a New York hospital, Riley chose Craig Hospital as his rehab facility. “And I hopped a $26,000 flight to Craig Hospital in Denver, Colorado,” he says, “where I spent the next four months rehabbing.”

Impressively, Riley never let his career fall to the wayside. “My injury was barely a break from work as I was in production on a self-directed documentary for Red Bull that I still somehow managed to deliver on time that year,” he recalls. “My opportunity to come to work at Nike came shortly after finishing the film, and I jumped on it and have been happily riding my desk here ever since.” He is currently an Executive Producer in the production studio at Nike, making films and advertisements.

What’s Next?

About three years ago, Riley’s life improved significantly in two more ways – he met his girlfriend, Andrea, and he began the remodel of a single-story home he recently purchased. On a tight budget and using some awesome creativity, Riley and his architects designed a beautiful universally accessible home without breaking the bank. A one-bedroom home with an open bathroom in the bedroom (with a curved glass shower made from basic materials), his house is something to behold. Go on a house tour with Riley here.

And check out his and Andrea’s blog, Poor House Love. Through their blog posts, they share what it’s like to have a spinal cord injury in a relationship. You’ll find posts on traveling together as a couple, tiny homes for wheelchair users (Riley’s family helped invented the WheelPad), even the benefits of using a hyperbaric chamber to ease chronic pain (it works!).

Life may not be the huge adrenaline rush it was before Riley’s life, but he’s 100% ok with that. He had his fun. “I have a drone that I play with for fun,” he says. “I also enjoy getting out and about on my electric arm bike when the sun is out, and Andrea and I have also become dedicated gardeners.” So yeah, life is still good for Riley, just in a different way.

Post-injury, did your desire to live life at full-speed waver at all?

– Follow Riley & Andrea’s adventures: Poor House Love

 Riley’s blog: The Life of Riley Poor

Watch Videos of Riley

A Day With Riley Poor

Runs for Riley Poor

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