Wheelchair Policy

Not Seeing Eye to Eye with Medicaid & Medicare Services

• By Stephanie Woodward
• Apr 01, 2020

Imagine going to a networking event or party, and, instead of looking into people’s eyes, saying hello to everyone’s waist. Imagine lifting a pot of boiling spaghetti from the stove over your head and praying none of the scalding water burns you. For many years, that was the reality of my life.

I have spina bifida, a congenital disability that affects my ability to walk. When I was around 12, I got a power wheelchair, and for the first time I could keep up with my friends — and gained a new level of confidence that comes with independence.

Just One Part of the Solution

But my power wheelchair wasn’t a perfect solution. When I was in law school, I watched my classmates present from behind a podium that hid their notes. When it was my turn to present, the podium towered above my eye level, forcing me to work twice as hard to memorize my arguments or risk looking unprofessional by keeping notes in my lap.

Then, four years ago, I learned about a new feature available on power wheelchairs. Called power adjustable seat height (PASH), it allows users to raise the seat of their wheelchair to any height up to 12", drastically altering their ability to move through the world. The moment I got PASH, my life was instantly transformed.

I could finally look people in the eye when I met them, see what lay ahead as I moved down a busy sidewalk, reach any item I wanted in the grocery store, and utilize all the shelves of my refrigerator and closets.

I’m lucky the work I do allows me access to this technology. Unfortunately, many of the approximately 5.5 million Americans who use a wheelchair don’t have access to the freedom and mobility PASH can unlock. Currently, the Centers for Medicare & Medicaid Services (CMS) classifies adjustable seat height as an optional feature that isn’t covered because it’s not deemed reasonable and necessary. As the single largest payor in this country, CMS sets the precedent for private insurers — many of whom also classify PASH as an accessory and refuse coverage.

Not an Optional “Accessory”

I beg to differ. An accessory is a purse or scarf, not a piece of technology that allows me to live my life to the fullest. CMS and other insurers also deny coverage of other vital equipment — such as medical bags that hold incontinence supplies, hydration systems such as a water bottle with switch-activated extended straw to allow quadriplegics to access water without assistance, and fender lights for safety and navigation — but the denial of PASH is particularly egregious.

Without adjustable seat height, even cooking a simple spaghetti dinner would be nearly impossible, not to mention dangerous. Lap burns caused by scalding foods or beverages are a daily risk for people in wheelchairs.

Moreover, when CMS evaluates a wheelchair user’s needs, it only considers the home environment, ignoring the fact that disabled people must leave our homes to go to work, to grocery shop, or at the very least, to keep doctors’ appointments. For those with jobs, the challenges only increase. Although the Americans with Disabilities Act requires workplaces to provide reasonable accommodations, the cost of lowering office equipment and furniture to accommodate a person in a wheelchair is prohibitively expensive for most businesses — and unrealistic.

A Money-Saving Choice

However, the cost of adding adjustable seat height to a wheelchair is only around $3,000 — a fraction of the cost associated with other options. For example, PASH can reduce the need for attendant services, which are typically covered by CMS and other insurers.

Even if using PASH reduces the need for attendant services by five hours per week, that adds up to about $3,000 in just one year (based on an average hourly wage of $11.26). Additionally, the disabled individual enjoys more independence. As much as we love our attendants, many people with disabilities would prefer to do more for ourselves and rely on attendants less, when possible.

When life-changing technology is developed, policymakers have an urgent responsibility to make it widely available. Yet as of today, CMS has not even scheduled a time to receive public comment on the issue of PASH coverage. Why? Because the majority of CMS’s decision makers are able-bodied people who do not fully understand how a feature they classify as an “accessory” can be vital to a wheelchair user.

Perhaps for their next meeting, decision-makers at CMS should sit in their chairs and pass a pot of boiling water around — over their heads.

Editor’s note: Stephanie Woodward is a proud disabled person and director of advocacy for the Center for Disability Rights. Woodward earned her J.D. with a certificate in disability law and policy and her MSEd. in disability studies from Syracuse University College of Law. Follow her on Instagram at stepfunny426.