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Cindy Bentley is a passionate advocate for people with intellectual and developmental disabilities. As executive director of People First Wisconsin, Cindy brings her lived experience, wisdom and heart to everything she does.
A former resident of Southern Wisconsin Center (an institution for people with intellectual disabilities), Cindy spent part of her early life institutionalized. She has an intellectual disability caused by her mother's alcohol use during pregnancy.
Thanks to a guardian who believed in her ability to live independently, Cindy left the institution as a young adult and began building a life of purpose in the community.
Since then, Cindy has defied every low expectation that was set for her. “A psychologist at my discharge told me I wouldn’t amount to anything, that I’d live in a group home and work in a sheltered workshop,” she says. “But look at me now. I’ve got a real job, I pay taxes and I fight every day for others like me.”
Founded with the vision that people with disabilities should speak for themselves, People First Wisconsin is a statewide self-advocacy organization run by and for people with intellectual and developmental disabilities. “We advocate for issues that matter like caregiver shortages, Medicaid and employment and we do everything we can to help people live in their communities, not in institutions.”
Under Cindy’s leadership, People First has grown into a powerful voice in Wisconsin. The group regularly meets with the governor’s office and other policymakers, urging action on key issues. “We’re pushing to close state institutions and move those funds into home and community-based services. It’s more humane, it’s more empowering and it’s cheaper,” Cindy explains.
Cindy believes that community living offers dignity and choice. “We don’t believe in segregation. People should choose how they live their lives, who they live with, and what they do every day. Not have someone else decide that for them.”
This has been a particularly exciting year for Cindy. In May, she received an honorary doctoral degree from the University of Wisconsin–Milwaukee in recognition of her lifelong advocacy. Cindy also made the U.S. Special Olympics volleyball team and will represent the country in Minnesota next year.
“I’m 67 and still going strong,” she laughs. “People ask why I don’t retire. But I say, why should I? I’m going to advocate until I can’t do it anymore.”
Despite her optimism and energy, Cindy is deeply concerned about the current state of services and supports for people with disabilities. She sees firsthand the growing crisis as people lose Medicaid coverage, face escalating housing insecurity and a shortage of caregivers, and struggle with the rising costs of essentials like food and medicine.
“Some people are sleeping in wheelchairs or staying in bed all day because there’s no one to help them,” she says. “That’s not right. That’s inhumane.”
She is especially passionate about raising wages and protections for direct support professionals. “They deserve $30 an hour at least. They don’t get benefits. And if they get hurt, they’re left with nothing. Without caregivers, people can’t live independently. It's that simple.”
Cindy is also a member of the participant advisory council for the Rehabilitation Research and Training Center (RRTC) for Home and Community-based Services in the Center for Rehabilitation Outcomes Research at Shirley Ryan AbilityLab. She brings the experience and perspective of people with intellectual and developmental disabilities to the council, advising on the range of work done by the RRTC.
“Cindy’s passionate input helps assure that the work we do is meaningful and beneficial to people with disabilities. It also ensures that the research team members grow in their understanding of critical issues,” says Sara Karon, a senior health policy researcher and an investigator in the RRTC.
Though Cindy may feel uncertain about the future, she remains focused on her mission. “Every day I get up and thank God I’m awake. Then I start working to make change. I help my members however I can. If I can’t help them, I send them to someone who can,” she says.
Cindy urges others to take action too. “Call your legislators. Share your story. Don’t give up. We may not see the rainbow right now, but that doesn’t mean we stop fighting for it.”