The Big Wheelchair Debate

Community Connects at Eye Level

We all desire a certain amount of control over our lives in what we eat, where we go, and who we see, and Mikelle is no different. Most enjoy sitting across the table and sharing coffee with friends and family at the local cafe. We sit at eye level, read each other’s facial expressions, and often give our friends that knowing look of understanding.

But what if you and your friends are at a gathering where people put their drinks on high boy tables, say at a local bar or restaurant? Everyone is standing, and you are the one sitting. It is awkward for everyone, don’t you agree? If you had the option to fix that dilemma, would you take it? Sure, most of us would, but it seems Medicaid disagrees if you have spastic quadriplegia.

It has been six years since Mikelle purchased a new wheelchair. We remember the time very well. It was just before the 2016 election, and there was concern that Congress could cut Medicaid funding and there might not be funding for new wheelchairs. Thank goodness for the late Senator McCain.

New Chair, New Opportunities or not?

The new wheelchair Mikelle wants has a feature that is new to her. This chair is a little smaller than her current chair, has a tighter turning radius, and can elevate her seat, giving her access to her kitchen, dining table, and social activities where she can chat with her friends at eye level and doesn’t seem to meet the Medicaid standards for approval.

Stepping in Her Agency/Advocacy

A Medicaid denial is not something anyone wants. Mikelle is determined to get the chair she wants. To do so, she needs to be re-evaluated by an occupational therapist. Unfortunately, I am traveling on the day of her appointment. Mikelle has asked Maryann and Kaitlin to accompany her. I can be available via FaceTime if needed.

Throughout this process, Mikelle has been the primary advocate. Weekly she calls the vendor to see where her new chair is in the ordering process. On her iPad, she has a wheelchair section full of questions to ask them. And in preparation for this upcoming appointment, we needed to help her put new language in the iPad to reinforce, in her words, her desire to have the added feature on her chair. We all know, Mikelle is a force to be reckoned with when negotiating.

Mikelle enjoys having agency over her life via her powerchair. Her body is limited in its movement, but the wheelchair is not, or is it? In her mind, she is vertically challenged and does not like it. She wants to be tall and look her friends and family in the eye. My money is on Mikelle in this big Medicaid vis Mikelle debate.