Wrong Wheelchair Stories


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Your Stories

The Medicare "in-the-home policy" affects people with disabilities all over the country. Here are stories from people who have been impacted by the policy.
If you find these stories upsetting then now is the time to change them.
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Wrong Wheelchair Stories
I was paralyzed in 2001 and at that time I got a wheelchair that fit my condition and transportation situation. It was a folding chair and light weight. Several years after that I was far more mobile and active and I was having serious trouble with carpal tunnel in both arms and hands as well as shoulder problems. I had even had one operation and was ready to have another. My doctor, Spinal Technologies and Rehabilitation, prescribed an ultralight rigid wheelchair. Both Medicare and my wife’s insurance company refused to cover it even with much justification and letters from the doctor. My medical complications from using the first wheelchair have become very minimal and do not require any treatment. The difference with the ultralight wheelchair is amazing and Medicare claimed that it wasn’t necessary and it would not be effective. Fortunately, I found a couple of organizations who helped me finance it. I will, eventually, need a powered wheelchair and I’m very scared to even think about the troubles I will have trying to get coverage for it.
Gary, IN

Not sure if this applies or is what you are looking for, but here goes: "In 1999 I was hit head on by a moving vehicle along hwy. 299 in Willow Creek. Besides the broken leg, mt chair was damaged totally.

It was promised that the insurance company, Allstate, would take of the replacement cost of the chair. For some reason, without getting the complete information they backed out on the coverage.

Because I was going to China to meet my now presemt wife, I took it for granted it was being handled.

When I returned in 2003, it was discovered that the chair was not paid for. It was even submitted to the medicaid and it still was not covered for the following reason: "Has an electric chair and does not need two types of chairs, manual and power."

Since then, I don’t have the power chair - I could not use it in my home, as well as need help getting in and out of it. I am currently back in the United States from a second trip I took to China and will be trying to get this chair covered through medicaid or medicare, but probably won’t happen.

I feel the allowance or need for only one chair is ridiculous. This only promotes limitations and the need for additional expenses. Expenses like widening doors in a private residence, attendant care services, or even the purchase of a van to hual the electric chair around - Who would pay for this?
Charles, CA

I have been paralyzed T-3 complete for 6 years now and desperatly in need of a new chair. I am 34 years old and try to stay as active as possible but as late can not seem to get medicare to cover the appropiate chair that will benefit me. I live in N. California close to the mountains and lakes which I enjoy getting out to as much as possible. Without a lightweight rigid wheelchair I can not load it into my 99 Jeep Cherokee. I am very independent as long as I have the right hardware to compliment active lifestyle. Please help with any info that would help in getting the chair I need.
Craig, CA
I am a 2 time cancer survivor and now and dabilitated by osteo arthritis in my knees, right hip , ankles and right hand and wrist. I have lymphodema in my left arm from breast cancer surgery. I have never in my life been so left out as I am not. I have always been very active and very outdoor oriented. I can manage to walk to my mail box with the help of my cane or walker, I can get around inside my house most of the time because it’s very small. What I can’t do is get out and be with my friends and family. I ahve grand children that play ball and I can’t even go to the ball park to watch them play because the parks are so big with so many fields that I just can’t make it there. I can’t go do any shopping other than at WalMart (they have motor carts) and maybe BJ’s or Sams. I can’t go to the mall, I can’t go to the park, I can’t take my dog for a walk, all I can do I sit in this house until I have a Dr’s appt. or need groceries and then it takes me half the day to get nothing done. I can’t have knee replacement because of a couple of health factors and there is very little out there to manage the constant pain that I am in. Being confined like I am just makes everything worse. I have no change of scenery, no enjoyment other than watching the world go by and I just want to be part of the world again. The Dr.s keep telling me that Medicare won’t pay for a scooter unless I have to have it inside. Well there are days that I could use it inside if my house was big enough to get around in with it, but I could certainly use it to have a much fuller and happer life by being able to do some of the things that I enjoy so much and then I might not be so depressed that life just seems not worth living. I’m only 56 years old and I have survived cancer twice,I have survived serious abuse as a child, but I’m just not sure of surviving being cut off from the world.
Mary, GA
April 2006, my boyfriend submitted an order for an ultra light wheelchair called a TiLite ZRA to spinlife.com. He needs an ultra light chair because he transfers into his pick-up truck and then lifts his chair inside. After speaking with the person in charge of submitting claims to insurance companies at spinlife.com, my boyfriend was told it would take 40 days to find out if medicare would pay for the chair. After 40 days of not hearing anything, my boyfriend called spinlife.com and spoke to the same woman in charge again. She told him that medicare had denied the claim, and she asked for additional paperwork from my doctor so that he could appeal their decision. She told him it would take another 40 days. In the meantime, my boyfriends chair is falling apart in every way possible. It can’t be fixed, as we have already replaced the brakes and are tightening bolts practically everyday. After about 50 days of not hearing anything, I called spinlife.com for my boyfriend and learned that he had "slipped through the cracks". What does that mean?? Apparently, medicare had switched companies who reviews incoming insurance claims, and they had lost all of his paperwork concerning the request for a new chair. They had no record of spinlife.com ever submitting a claim. Since then, my boyfriend has suffered from a concussion after his chair flipped over backwards and had to be rushed by ambulance to the emergency room. The funny part is, medicare never paid for his first chair either. His fathers insurance (secondary insurance) ended up covering the whole thing. In order for them to do this, a friend of the family had to pull some strings. Now, after a year later, my boyfriend is attempting to order his dream chair again, this time through a new company.
Kathryn, NY
I recieved a chair a little over a year ago from permobile, pos. It broke the first week I had it. I despertly need a chair it is the only way I can get around. They will not fix the chair and medicare will not pay for it to be fixed or replace it. I have nearly 4 years before I am elegible for a new chair. We have been fighting with this people for months just trying to get a new joy stick.
Amanda, AR
My 86 year old father has been denied a motorized scooter/wheelchair. He has had debilitating back problems and has had back surgery a few times. He now has a very difficult time walking or even standing for any amount of time. Two years ago he was outside and he fell, breaking his neck, basically, and had to have spinal surgery. The only wheelchair he has received is the kind you have to push and lift into the car, neither of which can my 78 year old mother do. Therefore, my father spends a lot of his day sitting inside. When he does go outside, as he will because he has done so all his life since he has always been an outdoors kind of person, he will occasionally fall. Recently, he lost his balance and fell in the basement fracturing a rib. He uses a cane and should be using a walker. I believe his quality of life could be greatly improved if he had better access to the outdoors and was able to go to the places everyone else can go to without being limited to his house due to the fact he cannot get around or stand very well at all. I have seen many other people using these motorized chairs/scooters who can stand right up and get out of them with no problem, and then, continue walking around a whole lot better than my father can. People who have worked all their lives, paid their taxes, raised children,sent them to college, should not be deprived of living out their later years because of physical disabilities when there are resources for them to be happier and more productive senior citizens in this country. Thanks for hearing my story.
Shelley, MA
I gess I’m very blessed. I’m C-6 when I could no longer push My old chair, Medicare only would pay for a K-5, The company that supplies chairs to Methodist Re-hab discounted a Quickie TI ultralight less than half price to help. I thank God daily. There are so many places I love to go, I love to do voulenteer work at My church and local A & D recovery centers. If I only had help from Medicare and medicade none of this would be possible. My old chair a lightweight model was provided by a group of urban bikers after Medicare got one of those old heavyweight chairs for Me. How do they think We can get around in one of those? God Bless Billy Christa
William, MS
I am confined in-house with my wheel chair. I am a widow with MS and a lot of other medical problems, but there is no disease or handicap worst then being stuck in your home day after day. I use to love my home but now I think it would be better if Medicare took and put us in prison, it could not be any more lonely and demeaning or depressing. At least there would be other prisoners to talk to or yell to from your cell bars. Because we are handicapped we are doomed to a fate worst than prison. We are under house arrest but in confinement. After awhile your wheel chair becomes your shackles. With the Medicare laws I feel there is not even hope for parole.
Maryline, ME
I’m lucky I guess. I have a wheelchair that is all I could ask for. The problem is that I can not get it worked on. I would have to pay for the work, and then wait and hope that Medicare/Medicad will pay me for the work. Right now, My chair will only run at about 80% of full power. It also jerks at take off. This is difficult for me as I work in an Art Center as a docent and gallery teacher. I just need someone who will work on my chair in a timely manner and bill Medicare. I paid for this over the 39 years I paid in.
Herb, VA
My story is like all the rest I’ve read and heard… I’m a 34 year old C-6 quadriplegic. I am also a single father of a thirteen year old son. Though I am in the process of learning, I do not yet drive and I don’t know when I will start. When I was first injured, my insurance qualified me for a Quickie P300 and it served me extremely well for over ten years. I never had a problem going the two miles to my son’s school or around the neighborhood running errands. I even made trips of ten miles and more in my wheelchair. Simply stated, I have a very busy life and need to get to many places in my chair. Unfortunately, Quickie no longer makes parts for the P300, so I can no longer get it serviced properly and I must get a new wheelchair. Of course, now having Medicare, I qualify only for a chair that allows me to ‘get around the house’. Unless I pack on another 125 pounds so I can qualify for a ‘K-14′ wheelchair (industry term), I’m going to get stuck with something that doesn’t come close to my old chair. I’m so nervous about how my normal life will be impaired by such a flimsy wheelchair that I’m willing to pay cash for the one I want… but NO!!! The vendor isn’t allowed to accept cash (cash unacceptable? in America?) and even if they did, Medicare wouldn’t cover the maintenance on it because they didn’t approve it in the first place. I’m getting no help, no answers, and there seems to be no solution. My life is about to change in a very bad way… all because of a wheelchair. I wish all in this circumstance the very best of luck and hope the future holds a solution for one and all.
Edward, RI
Although I was able to work for 12 years as a clerical person, not knowing I’d been afflicted with a progressive neuromuscular disease, it was still devastating when I could no longer work everyday due to pain and fatigue. Also contributing to this was an orthopedic contracture and deterioration of the foot. Three years after my ability to work, the Dr. suggested the use of a motorized wheelchair, which was paid for by a vocational rehabilitation agency. Not mentioning the mental/emotional/societal changes this adjustment made, I was able to get to the grocery store, be active in my community, and enjoy a nice day outside. Now, eight years after first needing a motorized chair, I’m faced with progressive changes that my current chair is not accommodating, and a Medicare system which is not capable of identifying.
Christie, IA
My mother has always been a very active person, walking 3-7 miles a day, sometimes twice a day. She did her exercises without fail, ate a healthy diet–and lost both legs above the knee to scleroderma in 2003. This woman is incredibly limited by her wheelchair, and has stated that she knows that ‘anywhere I go will be a prison–no privacy, no freedom, and total dependency’. She still is very diligent on preserving and enhancing what strength she still has, but what good does it do her when she can’t use her wheelchair outside the home on a regular basis? She needs the social aspect of getting out of the home; she is getting progressively more frustrated, and through frustration, depressed, as time goes on. To help ameliorate her situation and frustration, I am remodeling my entire home to her requirements, with everything built to accommodate her wheelchair and limited upper body strength. She purchased her chair herself and thus is not currently limited to using it in the home, but what happens when her needs change and the money is gone? What then? Should she be a prisoner due to her disability, or should her wheelchair enable her to be a vital, cheerful, contributing member of society once again? My mother, Evelyn Alley, is one fantastic lady who deserves to have as much of life as she can grab and hold. Please don’t make her into a housebound, depressed, miserable person who lives only in hopes of dying more quickly. Instead, let her OUT so she can be her wonderful, living, loving self with normal stimulation and activities. Give those in wheelchairs the liberty that this country was founded upon, and thereby the equality and justice to which they are entitled.
Pamela, CA
I am a 69 year old retired physical therapist with MS. I used a rolled walker with a seat, in and outside, renting wheelchairs for occasions but when I could no longer go more than 1/2 a city block I broke down and bought a wheelchair. I tried going through Medicare but all they had to offer were rental heavy wt used chairs. So I measured myself and bought the appropriate light wt manual wheelchair. I’m tall so a longer seat was appropriate and elevating arm rests that go back to allow a lateral transfer. I am now totally wheelchair dependant, and can have transferring difficulties. I am so glad that I knew what I was doing and got a wheelchair that would accommodate the progression of my disease. But now outside distances even very slight inclines and irregular surfaces are becoming a major problem as my arm strength is going. I go everywhere with my husband so he’s my pusher. He is 70 with asthma. I see problems ahead so we are tweaking our budget planning to purchase an electric wheelchair. Knowing that I will need to use this inside eventually were thinking also of my progression to make a good decision because there’ expensive. If I was younger and not retired and didn’t have a healthy great husband I would have needed an electric wheelchair 10 years ago. Do I feel I’ve missed doing things because of my limited pushing ability YES! Does it bother me that using a manual wheelchair outside makes me dependant YES. With the costs of home modifications, and prescription drugs I’m an expensive high maintenance spouse. It would be really great to get a little help from Medicare. Do I think their manual and electric wheelchair policies are fair? Absolutely not! Maybe if we put them all in heavy wt manual wc’s used heavy piled carpet, gravel/mud for a couple of wks they’d know what were talking about. But since that will never happen I guess we have to all band together and lobby, demonstrate etc. Good luck, you can help a lot of people!
Eleanor, NY
I applied to Medicare to get a scooter but was denied yesterday because they felt it was not necessary. Please, Please, if there is any way you can help not just for me but others like me. Saddly there seems to be no one to carry the torch for me to pass it to. Good Luck!
Patricia, CT
My son became a C5 quad overnight due to a freak accident just before he was to begin attending college. Thanks to excellent medical care and our private insurance, he got a reliable, high quality power chair. The power chair enabled him to resume a relatively normal life, graduate with highest honors from the university in four years and play an active role in college life, winning numerous awards for service to the university and for academics. Without that power wheel chair, his return to a full life would have been impossible. Now he is pursuing his dream career as a journalist and his power chair gives him the mobility and independence essential in his chosen profession.
Michael, OR

I have been an Occupational Therapist for 17 years serving the physically challenged. I am very concerned about this proposed change as it would leave a good majority of my patients without the ability to get out of the house…to return to productive life…to work….to go to school, etc. I work with the spinal cord injured population. They are 12-50 years old and ready to leave our hospital and return to living after leaving the hospital. [The "in-the-home policy"] robs not only them, but society. Thanks for considering a change to stop the fraud, but please do not make it at the expense of those that entrust us with their care.
Teresa, GA

I am a healthy person and an advanced practice nurse who has become involved with many children with Spinal Muscular Atrophy and Muscular Dystrophy. In planning discharge for these children and working with physicians I have come to realize that many are home bound but depend on their wheelchairs for their independence. Whether you are home bound or not should have no impact on the type of chair you receive or don\’t receive. These are special children who continue to receive schooling and their therapies in the home but who lead active lives even if homebound. To deny them the freedom and independence they deserve would impact on the qualtiy of life greatly for these children and their families.
Patricia, NJ

I myself have Medicaid(title 19) i have a mental health social worker that comes in weekly to help and check on me, she has had me talk to my dr. many times about a power wheelchair and a lift chair but both him and medicaid keep tell me i only meet part what i need to get any help.plus there is time where my dr. will write out an order then turn around and say he never wrote it out to me even after i made a copy of it and the wheelchair place has the origenal one. it seems like no one really listens or cares what really happens to us any more, so i have now stop tell the dr any thing and i stay home 98% of the time. Even now as i’m writeing to you all my feeling in my legs are numb as also my feet, i get muscle spasms all the time in my lower back and legs. earlyer tonight a friend went to get a push pin off my bill board and touch my feet, legs, and lower stomack which i had numb tingly feelings or nothing at all, she then told me to call my dr. in the morning, first thing i said to her was why? he will not help me.
Autumn, IA
I became a quadriplegic in a fall on my chin while picking a dead pansy while visiting our Son and his family in FL last January (06). I was marooned in FL hospitals for surgery and rehab for 3.5 months. Medicare bought my wheel chair and I appreaciate it, however, my husband and I had to buy tiedowns and a head rest to make it safe to travel back home to SC in mid April. We also had to purchase a wheel chair access van to make it possible to get me and my chair home. Once we got home we have traveled almost 12,000 miles for local health care providers and once returning to Ganiesville, FL to see my Neurop Surgeon. Medicare must change the law to allow coverage for out of the home use of wheel chairs.
Doris, SC
If you find these stories upsetting then now is the time to change them.
Sign up and join the Right Wheelchair Campaign.