It takes only a few minutes, but it could help a lot of people (maybe even you).

Hey Hackers, we’re marshaling the disability community and groupies to help support a critical initiative that could help people with a wide range of conditions ranging from multiple sclerosis (MS) to muscular dystrophy (MD), to ALS, spinal cord injuries, and more. Anyone can help and it only takes a couple of minutes.

What’s going on? Medicare is reviewing its policy on some critical power chair features and Congress is urging them to act.

Why should I care? This is much bigger than it sounds. Medicare influences the policies of many private insurance plans. If Medicare disallows a feature, then most private insurance plans do, as well (whee, we get to say no and save money!) Getting Medicare to cover a feature could be life-changing for people well beyond its sphere.

Now, obviously this is important if you’re a wheelchair user, but it matters even if you aren’t. This is a quick way you can support the greater MS and disability community. Also, if you have MS, there’s no telling what the future could hold. Fingers crossed that you have a mild course and your DMTs work well but in case they don’t, this is also an investment in your own future. And did I mention that it takes only a couple of minutes?

What are the details? The effort involves two critical functions

• Power seat elevation systems (vertical lift)
• Power standing systems – special wheelchairs that can raise a person to a standing position, even if they are incapable of doing so on their own

Medicare classes seat elevation as a “convenience” item. This makes the top of my head explode (Oh wow, did some of that get on you? I’m so sorry). In my case, because I have weak hip flexors and a lot of leg spasticity, I can’t simply lift my feet onto the footrest of my chair alone. If I didn’t have vertical lift in my chair, I could only get my feet up if somebody were to help me do it, and it even then, they’d really have to muscle me. With the lift, I just elevate the chair, lower the foot plates, and use the wall to nudge my feet back onto the footrests. Once they’re in place, I raise up the footrest, lower the chair, and I’m off to the races. If I didn’t have this function, I would be stuck in the chair anytime I was alone, unable to stand or do transfers. Alternatively, I would just have my legs dangling down, catching on the ground.

It’s also important when I have bad days because I can use it to help me with sit to stand or if one of my sisters or girlfriends is helping me out, I can make the work easier for all of us. To call this a convenience item is completely bureaucratic ablest thinking. I use it for “convenient” things like being able to brush my teeth and wash my face. Yes, sometimes also to get up the shelf in the refrigerator or into a cabinet. So, I guess that maybe they think of eating as a convenience?

Anyway, my insurance disallowed the power seat lift as a “convenience item” (and fist bumped Medicare). It cost about $4500 out of pocket. Let me say that again more slowly – it cost about $4500, out of pocket. Yeah.

Medicare also doesn’t cover power standing systems. Wheelchairs are amazing pieces of equipment for the disabled, but  the human body is not meant to sit all the time. Too much sitting damages nerves and causes skin breakdown and pressure sores, not to mention significant pain. Power standing systems enable even those unable to stand otherwise to get up out of their chairs. Ultimately, they stay healthier and cost Medicare/insurance less money in the long run. But again, somebody decided that that was just a convenience.

So, why are we talking about this now? A massive effort from a lot of people in 2020 finally prodded Medicare into launching a National Coverage Analysis (NCA) for coverage of power seat elevation systems in August 2022. There are now two letters circulating in Congress, one in the house and one in the Senate, urging Medicare to approve power elevation systems and add power standing systems to coverage.

What can I do about all of this? You can reach out to your senators and representative and urge them to sign the letter. But be quick – the cut off for signatures on the Senate letter is September 30 and the cut off for signatures on the letter from the House of Representatives is October 3.

Here is the link to the Senate letter

Here is a link to the House letter

Here is a link to a page where you only have to click a button and it will use your location to identify your senators and representative and automatically send them emails. It’s as fast as the click of a button.

If you prefer to reach out individually, you can find the names and websites on the government look up page here. Send an email through their website or call, reaching out is easy. It’s not as fast as clicking the button above but it still quick and you’re taking part in the democratic process.

As a recap, this isn’t just about Medicare members, this is for anybody who is disabled and will need to get a power chair through insurance. These are functions that are absolutely essential to the health of the disabled. This is bigger even than the MS community, it’s everybody out there is disabled. Let’s change Medicare’s mind, and then we can be the ones doing the fist bumps.

Thanks, and happy trails, Hackers!

Disclaimer

Hack My MS provides news and information only. It is an account of my own experiences and some techniques that have worked for me. It should not be construed as medical advice, nor is there any guarantee that any of these techniques will work for you. Always check with a medical professional before starting any exercise program, treatment, or medication. Do not discontinue any exercise program/medication/treatment or delay seeing a doctor as a result of anything you read on this site.