I Need This Post to Go Viral and I Need You To Help Make It Happen!


Imagine…..you wake up in the morning and you only get one pair of shoes to wear for the entire week. That’s it. You have to pick one pair to work in, exercise in, play in, hike in….everything. Which pair would you pick? Oh wait a minute. You don’t get to pick.

I do.

I have gone to Wal-Mart and bought you a cheap pair. They are size 6. Now, enjoy your week! I hope you are comfortable and your feet will be okay with my choice! 

Will they be okay?

Or, will your feet be crammed in? Will your toes go numb? Will you get sores of blisters? Will you be limping by the first hour? What about by the end of the week?

There is something going on in Washington that needs stopped. PLEASE, PLEASE help be a voice of change.

I will try to make this as simple as possible. Imagine losing a leg at 3 years old. Imagine being told that insurance would only pay for one leg for the rest of your life. How do you wear that little leg when you are 30 years old? Now, if you have the money, you can definitely buy yourself a new leg. But your insurance won’t help you. You are on your own. What happens to all those who cannot afford a leg that costs thousands and thousands of dollars? “Oh, they would never do that to people!!” Really? The state of New York already did.

Now imagine you have been diagnosed with ALS. You have lost your ability to speak and move most of your body but your mind works perfect. Insurance would help you to pay for an amazing wheelchair with high-tec accessories that would allow you to drive your chair and speak through special adaptations. Or maybe, like me, you need a wheelchair cushion so that you can live your life without pressure sores. I have a power add-on so that when I am out all day long, my arms – which get weak after much use – can get some help and it preserves my energy so I can enjoy my day. Or maybe it is the custom back on my chair which helps slow down scoliosis because of the paralyzed muscles which cannot hold me in place. How about the light weight frame and wheels that allow me to push myself, and load my chair so that I can be independent. Those are all accessories that my insurance will pay for if a doctor says I need them. But not after January 2016. It will all be a toss-up then. What if one of my wheels break? Then what? What if the back needs repaired? How can I move around without a wheel?

Here is what is going on in Washington. Starting January 2016, the Centers for Medicare & Medicaid Services (CMS) has decided that Medicare is allowed to diminish reimbursement rates for complex rehab wheelchair accessories & seating systems. Do you know what this means? It means that the rich can buy what they need. The majority of disabled people who depend on insurance to help pay for their equipment, will not get help. Their equipment will be up for “bidding”. This will not be good. Do you really thing a wheelchair cushion is going to last for 40 years? I assure you they do not!! Currently, my insurance pays for one every two years and I have needed one by then every time. Patches only hold so long. Read this to understand more.

This means that those with ALS, cerebral palsy, multiple sclerosis, muscular dystrophy & spinal cord injuries will be greatly affected. Many things on our chairs are considered accessories. Those “accessories” are not purple paint and sparkling wheels. They are things that are necessary for our everyday health and function. They allow us to be healthy emotionally and mentally as we can focus to continue to DO what we can physically.

If they shut us down physically, by eliminating the very items that we need to be mobile, then they have shut us down emotionally and mentally. You really thing that is going to save Medicare money?

This is why I went to Washington D.C. this past spring. We were fighting this very thing. We are still fighting but we need the help of all of our friends and families. We need this to get out and let every one know exactly what is happening. We need to shut down the politics of this and get back to caring for the individual and not the almighty dollar. Our politicians work for us. They need to represent us. This decision does NOT reflect the will of the disabled.

I have asked you to imagine a lot of things in this post, but for many of us, this is reality. And it is terrifying. If this was your reality, would you speak up? Please help us take a stand. This isn’t for a week. It is for our lifetime.

Over the next few days, you will meet a few friends of mine, and get a glimpse of how they are living their lives after spinal cord injuries. You will hear how they got hurt, how they are living their lives, and what this change would do to them. My hope is that if these words will not persuade you, maybe their stories will.

Now, what can you do?

1.Sign this petition.

It is just your name and email. The email will just ask you to confirm that it is really you signing. That’s it. It took me maybe two minutes if that. Please sign it. We only have till the end of October to get the signatures we need for this petition.

2. Spread this post! (at the bottom of this post, just click to share on Facebook)

Share what I have explained here and then share the stories that I will be sharing as we ask others to sign this petition. Ask your friends and family to please share. Hopefully, what they see with their eyes will affect hearts to help make a noise for change.

3. Call your lawmakers. Click here to find the numbers you need.

This is the idea of what you need to tell them – “Congress now needs to legislate a technical correction to clarify that CMS cannot apply competitive bid pricing to accessories used with complex rehab power and manual wheelchairs to prevent CMS’s application of these payment reductions scheduled for January 1, 2016.” You can put it in your own words, but that is the idea of what they need to do.

Tell them that you have friends and loved ones that will be greatly affected by this and this is NOT what we want! Tell them to please represent us as they have sworn to do. 

Lastly, let me say that I so appreciate each one of you who care about me. I know you do. And because of that, you care about what is dear to my heart. You care about “my kind.” Thank you for caring and for sharing!!

35 thoughts on “I Need This Post to Go Viral and I Need You To Help Make It Happen!

  1. Also amputees! My Ken is an amputee. We are blessed to have power chairs but are only able to use them at home as we have no way to transport them. I signed the petition!!!


  2. My sister-in-law I good health fell down some stairs, paralyzed the left side of her body and had part of her brain removed…she’s stuck in a wheelchair for life…two kids, one husband…they can’t afford to bring her home, provide necessary PT to keep her improving and potentially have her someday walk again…Medicare and Medicaid does not pay for the basic needs she needs except a hopeless life in an OK facility with visits from her family and kids and weekend trips home at their own expense to hire someone to be there just to get her to the bathroom and such.


    1. That is heartbreaking and should not happen. I am so sorry. If you would tell me where she lives, I could see if their is a group in her area that could offer peer support to her.


  3. This is so sad and no child or person should suffer when we have the ability to insure their health and improve their overall life by dioing so.


  4. we went through the SAME thing with my daughter who has cerebral palsy but I had to fight Tri Care the military insurance! They said said the accessories were “luxury items”!!!!! Took 3 appeals to get them to pay for it!


  5. My husband was an amputee, used a wheelchair and many other “luxury” products that insurance would not cover. They covered one wheelchair every other year. Usually, he needed one every year and a half. Even at that, they only paid a portion. Scooter, no chance.


  6. My husband died with ALS and there is such a need to help anyone that is disabled so that they can become more independent.


  7. I have a daughter with MD, so understand personally so many of these issues. I’m confused why competitive bidding affects the accessibility of these items (that are in no way luxuries). They already aren’t accessible. In our experience: private insurance gives one “mobility device every 5 years”–she got her power chair at age 4 and no support for an accessible vehicle. I would think competitive bidding would be an effort to bring down pricing. I’m clear on the needs of the community, not clear on the legislation. Thanks!


  8. It is outrageous, with all of the stupid spending being done in our country and OUTSIDE of our country, that this is happening to people who need it and have no way to fight for what they need.


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