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MULTIPLE SCLEROSIS
NEWS

Caregiving and Social Security

Posted on October 19, 2021
Article written by
Francie MacDougall

Not only do I have multiple sclerosis (MS), but so does my brother. He discovered it almost 12 years ago, although he’d been experiencing and willfully ignoring symptoms for a few years.

My brother was an intrepid anthropologist, living and researching in Indonesia. For him, the less visible signs of the disease showed up before the physical symptoms did. His memory faltered. His mood became less stable. He couldn’t keep a job. So he — along with his wife and son — moved home to Alabama to live with my parents. What followed were years of developing disease, paranoia, divorce, and the very slow realization that he could not find work.

He applied for Social Security Disability Insurance (SSDI), but was denied — repeatedly, for years. In the early days, he was embarrassed to have to apply and would tell a judge that he was going to get a job, that he didn’t know why he was applying for SSDI.

Later, I got involved and learned that the obstacle was a small college savings account that my aunt had established for my brother’s son. Because my brother was the custodian, the U.S. Social Security Administration never spoke to a doctor, never read a letter, never looked for any evidence of need. They’d found evidence that he had money, even though that money wasn’t his.

I’d been advised to hire an attorney, but it blew my mind that we’d need to pay an attorney to finesse a system that should be straightforward! Since then, I’ve hired an attorney so I could establish guardianship for my brother, but that strips him of any ownership of his future, and I don’t think it had to come to that.

I see his humiliation every day, when I bring him medicine to regulate his moods or when I drive him to the doctor or for his infusions. He is totally dependent on me. Occasionally, he is sad — but often, he holds his head up and reminds me how lucky we are to have a loving family. We are making small inroads into the messed-up system, but it galls me that the safeguards in place to prevent abuse can end up preventing those who need help from getting it.

MyMSTeam columnists discuss multiple sclerosis from a specific point of view. Columnists' articles don’t reflect the opinions of MyMSTeam staff, medical experts, partners, advertisers, or sponsors. MyMSTeam content isn't intended as a substitute for professional medical advice, diagnosis, or treatment.

All updates must be accompanied by text or a picture.
Francie MacDougall is a freelance writer who lives in Birmingham, Alabama. She was diagnosed with MS in 1990. Learn more about her here.

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