Standing up for Myself

I’m a creature of habit. I’ve had the same haircut since elementary school. I eat pretty much the same things. I’ve also had the same blog title since high school. As a reminder, the title is Observations From Below and it’s a clever way to allude to the fact that I sit down a lot. I might have to make a change to my title soon, as now I spend half of my day in a standing position. This is due impart to me being lucky and winning a fight that I never anticipated winning. I now have a fancy chair that helps me stand up.

I was always told to not even think about trying to apply for a new standing wheelchair because insurance would never pay for a chair that expensive. And even if insurance did somehow pay for it, the rules are different for adults on Medicaid. That makes it difficult for people with disabilities to obtain equipment this costly through the program. My whole perspective changed about and year and a half ago when I met a physical therapist named Mary Anne Loftin. The people who used to help me order chairs only looked at the equipment they thought I could qualify for.

In contrast to that approach, Mary Anne Loftin decided to shoot for the moon. Not only did the chair that she was looking at allow me to stand, but it had headlights and turn signals like a car. She challenged me as an advocate to fight for I wanted and needed so that others could follow my example.

I didn’t think I would be able to get this chair. The journey to my new wheelchair had its ups and downs. We received a letter in the mail from my primary insurance through my mother’s work stating that they would pay 80% of the cost, which was a positive sign. Unfortunately, that still left a hefty balance to cover. I thought it was smooth sailing from there because Medicaid would kick in, negating the necessity of having to fight such an arduous battle. Man, was I wrong.

A couple of weeks later, I received more mail stating that Medicaid denied my claim. The letter informed me that I had the right to appeal, offering two options for the process. One was to request an in-person hearing, and another was to request a trial by phone. We struggled with the decision, as there were pros and cons for both options. Requesting a hearing by telephone is logistically easier than driving to Raleigh. Requesting an in-person hearing would make it easier for me to advocate for myself, because the judge could see me. After talking, we chose the phone method. We selected a date for the phone hearing, and they were to call us between a certain time period during that day.

Our next step was to find a lawyer who specializes in Medicaid appeals. Just like any other person with a disability can, I contacted Disability Rights NC looking for a referral. They helped me find legal counsel, and we began to have productive conversations with him. I also had all my doctors write supporting letters, explaining the medical benefits of standing up (I have been diagnosed with osteopenia, the precursor to osteoporosis). The first step of the appeals process was an informal hearing with a mediator to try and talk with Medicaid to resolve the issue without having to go to court. On the day of the informal mediation, we found out that Medicaid had been trying to get more information from my wheelchair company. One thing they needed was an in-home evaluation to prove that I would benefit from this type of chair, and I wish I knew to have this ahead of time. We then set a date for the formal phone hearing.

After the in-home evaluation, the formal phone hearing date arrived. We waited around my mother’s phone like kids staring at presents on Christmas morning. The time came and went. They were required to call at least three times. We waited for the entire hour we were told to wait and didn’t receive any calls. With about two minutes left in our time block, my mother’s phone received three voicemail notifications coming from Raleigh. Apparently, there is a “dead zone” in our house, and her phone was placed directly into the Bermuda Triangle of cellphones in Lewisville. We called back about two minutes after our allotted time and reached the secretary. But she told us the judge had already left and that our case was thrown out for failure to appear.

I’m usually not emotional about advocacy failures, because those happen despite your best efforts sometimes. That day I could have turned green because you don’t want to see me when I’m angry. I even yelled at my personal care assistant, Dave, over some Valentine’s Day candy. That night I went to play video games in my room, and I would up crying because I have resources through my advocacy work that other people don’t. For example, throughout this process, I was receiving support encouragement from all different kinds of outstanding advocates. That night I felt all my year’s worth of work to get this chair led to nothing. I would have to start over ordering a new chair that was more basic.

I wasn’t completely ready to give up, so I never formally ordered the other chair. A couple of months later, I was at a Leadership Winston-Salem small group meeting preparing for our final presentation. Dave received a text from my mother saying that my standing chair was ordered. I didn’t believe her, because mom has a history of dreaming very vivid dreams, that sometimes do not make sense while others are more lucid. I wanted to see the chair myself before I got my hopes up. But she was able to convince me that it was actually happening. We stopped the LWS meeting and had a small celebration since they had been following the whole journey. A couple of weeks later, Chris Cockerham from Healthcare Equipment, Inc. (who was instrumental in helping me out) brought my new ride including all the bells and whistles.

I bet you’re wondering how I got the chair. Well, me too. We still don’t know exactly how it happened. But from what we can piece together, we got lucky on the timing of the order. I had met my deductible and out of pocket payments, so my insurance was able to kick in more than anticipated. Medicaid also helped a little bit as well. The moral of the story is to be persistent for as long as possible. I wish there were a magic answer. If you’re advocating for equipment that will help benefit your life, it’s worth the fight, and a trip to Raleigh. You might win as I did.

That’s how I roll, standing up.