Self-Advocacy: A Skill Every Person with SMA Needs

Self-advocacy is a skill that everybody needs at some point in their life. When you are dealing with a lifelong condition like spinal muscular atrophy, you will need this skill a lot earlier in life than most people. Unfortunately, the world is not set up for people with disabilities. Those of us living with a disability need to articulate our needs to people who do not fully understand.

Facing the insurance wall

When I was in my early 20s, I needed a new scooter. At this point in my life, I was still ambulatory; however, walking far distances was not possible. The scooter that I was using at the time was showing its age. When I discussed with my doctor that my current one was over 5 years old, he agreed that it was time to get a new one. He wrote the prescription, and he sent it to my Durable Medical Equipment provider.

During this time, I was working full time in a large office building. There were multiple floors and each floor required a considerable amount of walking. I could not get around as fast as I would need to during my workday. Not letting my disability interfere with my work standards was especially important to me. Having a scooter to get around quickly and safely was necessary.

The scooter would also help preserve my independence and quality of life. Outside of work, I enjoyed an active social life, and the scooter would allow me to continue engaging with the world around me safely, confidently, and without having to rely on others for help.

An unreasonable request

About a month after my doctor wrote the prescription, the insurance company sent me a denial claim. I reached out to my doctor, and his office helped me with the paperwork that I would need to appeal this denial. Then, the insurance company reached out to me and requested an in-person interview at their offices. They wanted me to be interviewed by their doctors to see if my need for a scooter was medically necessary.

At first, I was a bit taken aback by this request. After I had time to think about their request, I became more vocal about my needs. The insurance company’s headquarters were about an hour from my home. They wanted me to come in on a weekday requiring me to use a personal day. When I looked up the office building, I discovered that their parking garage was 3 blocks away. I also did not know how much walking I would have to do to get to the office where this meeting would occur.

Now as a disabled person thinking about this really made me angry that they were expecting me to do all of this. The review really made me understand that no one on this panel had any clue or understanding about what I was dealing with regarding my mobility limitations.

Turning the tables on insurance

I sat down and wrote out what I would need in order to attend their review. I have found that having my thoughts written down before I call helps me stay focused. I knew I needed to drive home that their request was unreasonable for someone who has mobility issues.

When I called the insurance company, I told them that I would need accommodations in order to get to their review. My requirements were not outlandish but in the back of my mind I knew that they would not be able to accommodate me. I told them that I needed someone to meet me in the parking garage with a wheelchair and then push me to the review. I would also need them to push me back to my car when we were finished. This person would have to be strong enough to help me with getting out of the wheelchair because that was something I could no longer do on my own.

The person who I was speaking with said that they would convey my requests but also admitted that they were not going to be able to accommodate me. I gave them a chuckle and said "Well, this is why I need a scooter."

Winning the appeal

I received a phone call a few days after my requests were made with the news that they were approving my new scooter. This news was great but it also reminded me that I always need to advocate for myself.

3 key lessons for self-advocacy

I want to leave you with these three key lessons. You are the expert on your own needs. Others may know their own policies, but they do not know how spinal muscular atrophy affects your daily life. Second, always stay firm but courteous. Respect earns cooperation and firmness ensures your voice is heard. Third, don’t accept the first no. Denials are sometimes based on incomplete understanding, asking questions and providing information can change outcomes.