by Anne Stokes
Cerebral palsy has not kept Ketrina Hazell from making a name for herself. The self-advocate was crowned Ms. Wheelchair New York 2018, co-founded the Voices of Power advocacy group, recently earned her associate degree and created a mentor program to help students with disabilities transition from high school to college.
Yet despite her capabilities, her parents were inundated by well-meaning case managers and medical professionals advising them to start the legal guardianship process around her 18th birthday. Luckily for Hazell, her parents were hesitant to take away their daughter’s legal rights.
“It’s like someone is assigned to be your voice, even if you can speak,” she says of guardianship. “All I needed was someone to support me in making decisions.”
Hazell found her solution when she attended a workshop put on by Supported Decision-Making New York (SDMNY). The program aims to educate individuals with disabilities as well as their families about alternative and less restrictive options to guardianship.
“This is what I really wanted, to create a support system instead of guardianship,” she says. “The difference is the supporters aren’t there to make the decisions for me, they’re there to support me in making those decisions. They’re not making them for me, I’m able to communicate with them and say, ‘I want to make this decision in terms of medical (care), do you think that’s a good idea?’” Instead of an individual having no legal right to make life decisions, as would be the case under guardianship, supported decision-making involves an individual in creating their own plan with the help of chosen supporters in important areas like housing, finance, medical care, relationships, education and more. In 2018, Hazell created her own Supported Decision-Making Agreement and today serves as an SDMNY advisory council member.
While not a legal document, Supported Decision-Making Agreements are a valuable tool that can be shared with medical providers, schools and more. Hazell says one of her advocacy goals is to have agreements like hers legally recognized.
“I want other people to know this is another option besides guardianship,” she says. “I want policymakers to know that everyone’s disability is not a one-size-fits-all approach. Just because a person has a disability doesn’t mean they’re not capable of using their voice.”
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