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How Medicare Guidelines Are Leaving People Trapped Without Mobility Equipment

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My name is Lynne, and I live in New York City. I have been chronically ill since birth, and disabled since my mid-20s. I have been affected by severe chronic psoriatic arthritis since my early teens. Almost five years ago I began using a power wheelchair as walking with crutches became increasingly difficult and painful. Then three-and-a-half years ago, I developed stage 3 malignant melanoma as a result of using immune suppressing biologic drugs to control my arthritis. Since my cancer diagnosis, I am longer able to use the medication I need to control my arthritis, as it would cause a recurrence of the cancer, and I’m told I will not be able to use these medicines ever again. Consequently, in the last three years, my mobility problems and joint damage have gotten worse, and the power chair has become essential to my staying mobile and maintaining what is left of my independence.

In early June, my chair, which was four-and-a-half years old, failed me for the fourth time in two years. I requested repairs and sent it to the durable medical vendor to get fixed, but my insurance company (AARP Medicare Complete administered by United Healthcare) denied authorization for repairs to the chair. They stated that it had been fixed too many times for the same problem, and was close to five years old. United Healthcare told me that I needed to have the doctor prescribe a new chair. They promised to expedite the request and authorization once received.

I did as I was told, and worked with my doctor and the rehab clinic at the Hospital for Special Surgery and we requested a new chair of the same type — a group 3 simple power chair, with no tilt or recline functions or anything fancy, just a simple power chair with seating appropriate to my size. I was born with Turner syndrome (a form of dwarfism associated with skeletal problems caused by a chromosomal abnormality and am only 4’6 1/2.” Those of you who use power chairs know how long, onerous and frustrating this process can be.

My initial request for a group 3 chair was promptly denied by United Healthcare. In the denial letter they stated that “under Medicare guidelines,” my disability didn’t qualify me for this type of chair, as I didn’t have serious neurological disability, but that I might qualify for a group 2 chair (a Pride Jazzy) which is a standard chair made for adults of average height. These chairs cannot be adjusted to fit my seating needs as a little person, and even the smallest size group 2 chair would be way too big for me.

We appealed this denial, stating that such a chair would be far to big for me and could not be modified to fit me. I am approximately the size of an 8-year-old child. In addition, a group 2 chair would not provide adequate support for my spine, which is severely arthritic and has had multiple fractures due to osteoporosis. I also have scoliosis, and this makes the right size seating even more important. United Health Care denied my initial appeal at lightning speed, and a third party appeal by Maximus was also denied. A supervisor stated that she would request an internal review, however this was not done, as I had by that time request a hearing in Federal Medicare Appeals Court.

I haven’t yet heard about whether I will be granted a hearing or when. One of the United Health Care representatives advised me that I should just request approval for the group 2 chair, that at least it would be “better than nothing.” Actually, it would be worse than nothing. It would be intolerably uncomfortable for me to sit in a chair that is the wrong size with inadequate back support for at least eight hours a day.

United Health Care would not authorize a loaner or rental chair in the interim. I had warned everyone involved (my doctor, their staff, physical therapist, DME provider, and the insurance company) that the chair was unsafe. It rocked while moving, and that not only was the jarring of the rocking painful, but I was concerned that I could be injured if it rocked forward and pitched me out of the chair while moving. Unfortunately, I had no option but to continue to use the chair or be completely housebound and isolated.

In mid-October, while coming home from getting my prescription and groceries, my broken, unsafe chair rocked, tipped and I was thrown onto the cement in front of my apartment. I ended being taken by ambulance to the ER with a chest contusion and broken ribs, a cut up hand and sprained wrist and hand. I was not very severely injured, but the injury has made it even harder for me to get around and makes using a walker or my crutches (which I only use inside to get from the wheelchair to the bathroom or my bed) a lot more difficult and painful. I don’t dare use the chair, and at this point I’m unable to leave the house independently for anything, including doctor visits, errands, getting prescriptions, church or social contacts.

I am using a borrowed manual chair, which is very difficult and painful because of the severe arthritis in my hands, wrists, elbows and shoulders. It is extremely difficult, painful and tiring for me to propel myself. Thankfully my apartment is very small, and the bathroom is close to my bed. I am basically limited to being in bed or my recliner with trips to the bathroom as needed. The only way I can leave the house is if someone comes to the house and pushes me in a borrowed manual wheelchair. I live alone, so I am currently a virtual hostage in my own apartment and dependent on help from friends, which is starting to cause resentments and difficulties. United Healthcare Medicare plans do not authorize long-term home help, and I am ineligible for Medicaid, which would provide such services if necessary.

This is wrong, inexcusable and amounts to abuse by United Healthcare and other insurance companies who are hiding behind Medicare guidelines to justify denying disabled people the medically necessary mobility devices they require, and to avoid having to pay for them.

I am not the only person to experience this nightmare. The rehabilitation/seating specialist who is helping me encounters this situation every day when dealing with patients. He confirmed that in his experience, insurance companies use these “Medicare guidelines” which are not hard and fast rules, but guidelines subject to flexible interpretation to avoid paying for wheelchairs and other necessary rehabilitation and mobility equipment. The rehab specialist told me this is a global problem, and isn’t necessarily limited to Medicare, as insurance providers routinely use “Medicare guidelines” as the basis of their coverage decisions.

The inflexible application Medicare guidelines has resulted in many people being denied medically necessary wheelchairs, resulting in patients having to fight for this necessary equipment, if they have the tenacity and mental and emotional strength for such a fight. Again, this is not only a problem for people on Medicare, but virtually all people who need wheelchairs as private insurance companies base coverage on the same guidelines. Many physicians (my own included) will not even sign off on most requests for group 2 wheelchairs, as they are very rarely appropriate for those who truly need wheelchairs.

All people with disabilities need to know about this abuse and manipulation of Medicare guidelines by insurance providers, as it will make it hard or impossible for them to get the medically equipment they need to live independently, or to replace old equipment when needed. There is currently a bill in the House which seeks to change these rules and guidelines and make medically necessary equipment accessible to those who need it — H.R. 750, the Ensuring Access to Quality Complex Rehabilitation Technology Act of 2017. You can contact your Senators and Congressional representative and ask them to support this bill. Otherwise, unless things change, you will also likely face this situation at some point.

In the meantime, beware. Insurance companies will continue to try and twist these guidelines into hard and fast rules, and attempt to use them to justify denying you a wheelchair or other rehabilitation equipment you may require.

Meanwhile, the struggle to maintain our independence continues, and we fight yet another battle.

Originally published: December 24, 2018
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