Saturday, June 18, 2022

For some adults, it takes a team, not a guardian, to make life decisions


I am 19 years old and live with my family. I happen to have autism and am a cancer survivor. A lot of people like me have a guardian. I don’t. Instead, I use something called supported decision-making.

This is an alternative to guardianship where individuals pick a group of people they trust to help them make decisions. I am the decision-maker in my life.

State Senator Joan Lovely and Representative Paul Tucker have proposed a bill to provide a legal framework for supported decision-making in Massachusetts. I testified in favor of the bill at the State House. Passing this law would mean more people who want to could use supported decision-making. Fourteen other states and the District of Columbia already have laws like this one.

When I was in school, my mother and I were told that I needed full guardianship. This didn’t feel right for us. My mom had learned about supported decision-making and we found it was a great alternative for me. I chose my supporters and decided on the support I wanted.

Then came cancer. I was diagnosed during the pandemic. My supported decision-making team proved essential in helping me make my own decisions. Fighting cancer has been one of the hardest journeys of my life. But I was able to let my body and voice guide me, with support from my parents and others. I am so thankful for the freedom I’ve had to choose my treatments.

COVID-19-related visitor restrictions made supported decision-making harder. We had to advocate with the hospital to have my supporters with me at appointments. A law would make it easier for people to have supporters with them anywhere they need them.

Guardianship would have been worse than death to me because I would have lost my choice. I fully trust my team, but I want to make choices for my own life, and this law would protect that process.

Jonathan Gardner

East Bridgewater

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