leo in bloom magazine


Managing Our Own Lives: the Guardianship Bill of Rights Act

by nick pentzell

In the freedom we access as spellers, we discover that gaining communication means gaining the means to control the direction of our lives and become responsible for how we live. This involves a years-long learning process for ourselves, our families, our friends and supporters, and our service providers and staffs. For some this involves a paradigm shift, realizing that people who were once seen as incapable and requiring protection must have the right to make their own decisions.

Everyone needs help making major decisions, and it’s not unusual for many people to assist one another with smaller things like managing finances every month. But when you’re an adult with a disability—particularly non-speaking or with unreliable speech—the laws in most states place you in an either/or category of being competent of managing your life independently, or else incapable/partially dependent and therefore requiring guardianship.

My stepmom supports my decisions and involvement as an equal in our household, but we struggle with how this can be sustained in the future when she dies, so that I can continue to run my life with assistance while retaining legal control of my autonomy. Right now, in Pennsylvania, where I live, with its either/or dichotomy there is no effective way to do this.

However, there’s hope, not just for me and Pennsylvanians, but for all of us in the U.S.

For several years one of my state’s senators, Robert Casey, with bipartisan support has been advocating for national reform of guardianship practices and, following the lead of individual states like Delaware, looking at alternatives such as supported decision making. At the end of March (with the co-sponsorship of Senators Fetterman, Warren, and Sanders) he introduced the Guardianship Bill of Rights Act (S.1148) to minimize the need for and to regulate the practice of guardianships, and he and Senator Braun introduced the Guardian Grant Flexibility Act (S. 1126) which will fund the training and recruitment of law students and new lawyers to represent elders and people with disabilities in guardianship cases.

I urge spellers and the people in their support systems to back these bills as they move through the law-making process. Please contact your members of Congress, beginning with senators, who will be the first to review and vote upon these proposed laws.

Nick Pentzell

To learn more:

Guardianship Bill of Rights Act

and a one-page summary

and where you can follow the bill through legislation

Guardianship Grant Flexibility Act

and where you can follow the bill through legislation

Autistic Self Advocacy Network: ASAN Statement on the Guardianship Bill of Rights Act

Supported Decision Making in Delaware (note that this has requirements for supporting a person’s method of communication!!)

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We welcome submissions from nonspeakers and will consider submissions from speaking allies. Our issues come out every 2-3 months; the next issue will be on TRAVEL for July 2023. Please feel free to contact us here to pitch a submission!

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