My Story by Marvin Moss

I was born to be an advocate for people with developmental disabilities (DD). I had a brother, born in 1941, with DD. I was born in 1946 also with DD. My mother became a strong advocate for my brother and me. She started parent organizations in Cincinnati, the state of Ohio and was a co-founder of the ARC USA.

My Story by Marvin Moss

After my parents passed away, I promised my mom that I would always be there for my brother, and I was. He lived in an institution not close to Cincinnati and I wanted him to move closer to me. I advocated with the support of Ohio Protection and Advocacy, Inc. (APSI) to become my brother’s guardian. It took many years but in 1997 my brother moved near me and I became his guardian along with APSI. I was the first person with DD to become a guardian for another person with DD. APSI then recruited me to be the first person with DD on their Board of Directors. As a board member I had to vote on some very difficult problems, like life or death, parenting, medical procedures, etc. I did this because of my promise to my mom to make sure my brother was safe and had family and friends close by. So, I wanted to help others without families to protect their rights and make sure that someone who cared about them was in their life to help make big decisions.

In 2007, I graduated from a leadership and advocacy program, Partners in Policymaking (PIP), funded by the Ohio DD Council. I learned skills to work with policymakers like you. I believe that people with DD can make decision and must have a say in their future. Also, because the longest relationship that any of us will have in our lives is with our sibling, I believe that siblings should and want to learn how best to support their brother or sister. This can happen by creating Self Advocacy Policy and Training Centers and placing a sibling on State DD Councils!

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