Speak Up, Speak Out, Speak Loud: Taking on Ohio's Disability System

In this episode of Ohio DD Talks, host Shari Cooper sits down with three advocates who know firsthand how complicated — and consequential — the rules governing disability support services can be. Renee Wood, a well-known Ohio disability advocate and two-time author; Dana Charlton, Executive Director of the Ohio Self-Determination Association; and Nicholas Comstock, speaker and podcaster, join Shari for an honest conversation about how state rules get made, why the system confuses everyone it touches, and what it actually takes to fight for change.Host: Shari Cooper Guests: Renee Wood, Dana Charlton, Nicholas ComstockKey TopicsHow State Rules Are Made: Dana breaks down Ohio's rule-making process — from agency drafting to public hearings to review by the Joint Committee on Agency Rule Review (JCAR) — and explains why showing up in numbers with a unified voice is one of the most powerful things advocates can do.Why the System Is So Confusing: Nick points to agencies that don't talk to each other, overloaded case managers, and contradictory rules as the root of the problem. Renee argues the fix is simple: stop creating a new rule for every new problem and start simplifying the system overall.Who Is Really the Boss: Renee and Nick dig into the tension between providers who answer to agencies and the people they are supposed to serve. Renee contrasts the confusion in Medicaid-funded care with her own experience as a private hire employer, where she signs the checks and there is no middleman.Nick's Fight for a Patient Lift: Nick shares his months-long battle to obtain a portable electric patient lift covered by his Medicaid insurance. After repeated rejections from DME companies citing low reimbursement rates, the solution turned out to be a simple prior authorization — a lesson with real takeaway value for anyone hitting a similar wall.Stopping a Bad Rule: Renee recalls her first year on the Ohio DD Council, when she pushed back against a proposal to convert garages into group living spaces for people with disabilities. Her pointed response helped kill the proposal on the spot.What Would Actually Fix This: Renee calls for people with disabilities to hold positions of power in the systems that govern their lives. Nick's answer: speak up, speak out, and speak loud — and make lawmakers care enough to listen.Advice for Advocates: Know your rule cold. Use real examples from your own life, not pity. Do your own research. Get in front of your legislators and don't let them forget your face. Be the squeaky wheel.Why It MattersThe systems shaping the daily lives of people with disabilities were largely built without them. This episode is a frank, sometimes funny, always honest look at what it takes to navigate those systems and change them. Whether you are a person with a disability, a family member, or a provider, this conversation will make you think differently about who holds the power and what happens when people decide to take some of it back.Resources and LinksOhio DD Council WebsiteOhio Self-Determination Association (OSDA)Nick Speaks — New podcast episodes every Tuesday on Apple, Spotify, Amazon Music, iHeart Radio, and YouTube. Search "Nick Speaks." Contact: [email protected]