Independence Is Always a Fight

Last week, I received a letter from the Social Security Administration. For many disabled people mail from the Social Security Administration can be nerve wracking. The letter informed me of an upcoming phone call.

I have received SSI since 2016 due to Cerebral Palsy. Applying for and receiving benefits can be a lengthy process. Around 65% of all Social Security Administration disability claims are denied on the first application. The average wait time for an initial disability determination at the Social Security Administration reached an all-time high of more than six months, or 198 days, last year. It has nearly tripled in length during the last decade.

The redetermination process occurs every few years to ensure that I am still eligible for SSI. Many things can affect someone’s eligibility including employment, marital status, and living arrangements. In many states Medicaid coverage is tied to SSI, which can lead to a loss of coverage if you are found ineligible.

For millions of Americans, Medicaid is a lifeline. Medicaid is the only insurance that covers home and community-based services. In my case, Medicaid pays for my PCAs. My PCA helps me with activities of daily living including showering, toileting, and dressing.

In 2021, I received a new power wheelchair. The process took eighteen months. I had to file an appeal with my health insurance company because they didn’t think I needed a new one.

After successfully appealing the chair, insurance denied the seat elevator. According to Health New England, I didn’t need it. It was more of a convenience to them.

The people who made this decision have never met or spoken to me. I am more than a letter of medical necessity or a diagnosis, but that is how they see me. Dealing with health insurance companies feels dehumanizing.

The seat elevator increases my independence. With the seat elevator, I can reach cabinets in my kitchen, help prepare meals and reach high shelves independently. Heath New England wanted to save money by further limiting my independence.

Disabled people often have to fight for things that improve their daily lives. Insurance companies shouldn’t deny disabled and chronically ill people access to equipment and other supplies they need to live.

Sometimes we have to fight to live in our communities as well. After graduating from high school, I had to request more PCA hours from Medicaid to attend college. Unsurprisingly, I had to appeal their decision.

I am tired of having to fight for things that I need. Navigating bureaucratic systems is a long, emotional process that can take years. Being disabled often feels like a full time job. It is frustrating that my independence is dependent upon the decisions of bureaucrats who have never met me, and do not understand what life is like with Cerebral Palsy.


Konish, Lorie. “As Social Security Disability Application Wait Times Hit Record High, Experts Say It’s a Sign the Agency Needs More Funding.” CNBC, CNBC, 16 Sept. 2022,

Trudeau, Joyce. “Does Social Security Disability Deny Everyone the First Time They Apply?” Disability Secrets, Nolo, 21 Jan. 2022,

“Understanding Supplemental Security Income (SSI)– Redeterminations.” The United States Social Security Administration , The United States Social Security Administration ,

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