#AdvocacyMatters: Leading Through Lived Experience

May 29, 2026 / #AdvocacyMatters

When considering and deciding on policy changes, the real-world impacts of those who will be most affected must be kept front and center.

Home and community-based services are essential services for many Ohioans with disabilities who otherwise would be at risk of institutionalization. It is imperative that people with disabilities do not lose access to care, services, and their right to live in the community. And most importantly, in all steps of decision-making, people with disabilities must be at the table.

Any changes proposed to Medicaid home and community-based services should be informed by the people who rely upon these services for assistance with daily activities such as toileting, bathing, grooming and other hygiene care. These types of supports are necessary for many Ohioans with disabilities to have employment, integrated community living, and support for overall health and wellbeing.

This week, members of our team visited the statehouse for face-to-face conversations about the real, raw, and un-considered impacts of this attack on community-based services and the immediate harm that would come to people with disabilities throughout Ohio. Led by DRO Board of Directors Chair Matt O’Nesti, this advocacy aimed to elevate the first-hand experience of advocates who require these supports in their daily lives.

“It's incredibly foolhardy to try and make a policy regarding someone’s freedom to live in the community when your own freedom hasn’t been jeopardized,” O’Nesti shared. “To say ‘they're just being helped with chores and menial tasks’ when you yourself have never needed help brushing your own teeth or physically doing laundry. Until you talk with the people who have these lived experiences, you’ll never know or understand the harm that will come from losing these services.”

“Decision-makers in Ohio must listen to the people who will be most impacted by the systems they are actively working to change,” said Brittanie Maddox, DRO Policy Director. “People with lived experience and direct users of the Medicaid system are the experts: It’s imperative that their voices are kept at the center of the conversations and that policymakers take input seriously during this legislative process.”

Amid these ongoing challenges, we will continue to elevate the voices and lived experiences of those who are set to lose the most. Your voice is important. Please share your story with Ohio’s leaders.

Please click here to take action.

#AdvocacyMatters