We have just started an important project.

We want to find hidden financial resources across America that will specifically help polio survivors purchase medical equipment. This would be equipment that health insurance providers, such as Medicare, rule as unworthy or unnecessary to furnish.

Being disabled in America can be very expensive—especially if one is a polio survivor. The cost of medical equipment not covered by health insurance can be outrageously high-priced, yet critically important for sustaining a satisfactory quality of life. Polio survivors, with progressive physical impairments especially, are often required to personally pay what feels like an extra “American tax on disability” because government funding for many adaptive devices is negligible. Beyond the basics, health insurance plans and government agencies offer little or no financing for increasingly necessary items including split size pairs of shoes, bath lifts, specific electric scooters, wheelchair-adapted vans and respiratory equipment.

Many people assume that all “medical equipment” is covered by one’s insurance, but that is frequently not true, or the co-pay owed by the individual needing medical equipment can be more than someone on a limited income, such as Social Security or Disability, can afford!  A few examples are Medicare and many health insurances will not pay for powered stair lifts that would allow a person who no longer can safely climb stairs to continue to live in a home with stairs.  And, although Medicare will pay 80% of the “usual and customary” cost of a powered mobility scooter or power wheelchair, they will not pay for any extra devices attached to a vehicle that are needed to transport the scooter/wheelchair and thus allow the person to leave their home. 

Being able to access some additional funding to help cover these expenses can mean the difference between people being able to live independently and having a meaningful life in the community versus being in some sort of care facility or being lonely and isolated.  I am frequently asked by polio survivors about financial resources for such instances, and I have no way to find what may be available outside of what I have learned from experience.  Having a directory would be enormously helpful to me as a medical professional and to the persons who find themselves making difficult choices about their quality of life and safety and financial issues.“

–Marny Eulberg, MD, Post-Polio Specialist, Mountain & Plains Post-Polio Clinic, Wheat Ridge, CO  

Very little about any possible funding is known or ever shared with polio survivors.  There may, however, be a variety of sequestered financial resources that do exist and are available for polio survivors who need to purchase medical equipment. Chive Charities is one example. It provides financial aid for equipment to individuals who have a rare disease such as Post-Polio Syndrome. There may be more resources like this one that exist, but because the research to compile a specific funding directory has never been undertaken for state and national use, post-polio consumers and their providers are currently left believing there is little to nothing available.

So, a couple of us are heading up this new project to unearth resources. Sponsored by the University of Michigan Department of Physical Medicine and Rehabilitation and Post-Polio Health International (PHI) we are taking the time to do a deep search of the internet and reaching out to consumer and professional networks. Our goal is to then create a list and publish it nationally for everyone to use and share. This effort will be not only groundbreaking but also useful for polio survivors who rightfully feel deserted by our health care system.

As the facilitator of an active post-polio support group, and as a polio survivor, it has become obvious that polio survivors are an abandoned group in the area of health care services and funding for essential equipment necessary for daily living. Funding services are especially scarce and difficult to identify. For example, I have received calls from hospital social workers searching for available funding or financial aid, not loans, for patients desperately needing medical equipment, such as braces, a lift, etc. There is a real need for a current directory of funding sources. This type of directory would prove to be an invaluable asset for polio survivors and other interested parties.  

 –Bonnie E. Levitan, Chairman, Southeast Michigan Post-Polio Support Group

You can help us build this important list, one step at a time! 

Just respond to the following question by using the comment section below:

Where have you/your post-polio friend or relative/post-polio patients found funding for medical equipment that health insurance did not cover?

This would be actual monetary support, not loan closets or low interest loans. Please send us the name, address, phone number and web address along with a two-sentence description of how the specific national or state resource (ex: a philanthropist or organization) would help polio survivors pay for needed medical equipment.

We hope that by the end of summer, we will have a good long list of helpful financial resources that PHI will advertise and publish on their website. Wish us luck!

Thanks for reading,

Sunny

P.S. This new project has evolved out of my own personal angst. I call it “dignified desperation.” I currently need help to purchase a new wheelchair-accessible van. To learn more, click on Fred Flintstone!