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 Woods, 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 Woods, Dana Charlton, Nicholas Comstock

Key Topics

How 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 Matters

The 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 Links

• Ohio DD Council Website
• Ohio Self-Determination Association (OSDA)
• Nick Speaks — New podcast episodes every Tuesday on Apple, Spotify, Amazon Music, iHeart Radio, and YouTube. Search "Nick Speaks." Contact: NickSpeaksOfficial@gmail.com

In this episode of Ohio DD Talks, host Shari Cooper takes us inside one of the most energizing events of the year for Ohio's developmental disability advocates, the annual DD Awareness and Advocacy Day at the Capitol. Shari, who served as emcee for her 12th consecutive year, sits down with three guests who help make the day happen: Shannon Strow, Manager of Government Affairs for LMK Advocacy; Hunter Robinson, a lead advocate at the Ross County Board of DD; and Krystal Albright, advocate and community volunteer from Paulding County.

Together, they reflect on how the event has evolved over more than a decade, growing from two separate days into one powerful gathering of 500 advocates. They also share what this year's theme, "Power of Support," means to them personally. From meeting with state legislators to hearing Governor DeWine speak live for the first time, this episode captures why showing up at the Statehouse matters and what it feels like to be in a room full of people fighting for the same things.

Host: Shari Cooper

Guests: Shannon Strow, Hunter Robinson, Krystal Albright

Key Topics

The History of DD Awareness and Advocacy Day: Shannon shares how the event began over 10 years ago as two separate events and how LMK Advocacy has helped shape and grow it over the last five years.

This Year's Theme: Power of Support: Hunter and Krystal reflect on what "Power of Support" means in their own lives, from job coaching and HPC support to transportation services and the networks of people who make their goals possible.

Taking It to the Legislators: Hunter shares his experience meeting with State Representative Mark Johnson to discuss sidewalk and bus stop accessibility in his community and what it feels like to advocate face to face for real, local change.

Governor DeWine at the Capitol: For many attendees, this was the first time seeing the Governor in person. Guests reflect on his message around DSP pay, universal changing stations, and making Ohio more accessible statewide.

Storytelling on the Main Stage: Shannon highlights the event's storytelling segment, where advocates Hunter, Christina, and Hope shared personal stories of support, as the most meaningful moment of the day. For Hunter, it was a dream years in the making.

An Invitation to First-Time Advocates: Shannon and Hunter encourage anyone thinking about attending to take the leap. The event includes a walkthrough of the legislative meeting process and is designed to help new advocates build confidence.

Why It Matters

This episode is a reminder that advocacy is not just something that happens in policy rooms. It happens when real people show up and share their stories. DD Awareness and Advocacy Day gives self-advocates, families, and providers a direct line to the lawmakers who shape the systems they rely on every day. Whether it is fighting for better DSP pay, more accessible sidewalks, or bringing the Special Olympics closer to home, this event shows what it looks like when the developmental disability community shows up together. If you have ever thought about adding your voice, this episode will convince you that now is the time.

Resources and Links

• Ohio DD Council Website
• LMK Advocacy
• Learn about DD Awareness and Advocacy Day

In this episode of Ohio DD Talks, host Shari Cooper sits down with Jan Goings, director of strategy and partnerships of Starfire, and the Cail family—Grace, her father Jeff, and her mother Kathleen—to discuss the inaugural Inclusion Seekers Summit held in October 2025 at the Cincinnati Art Museum. Organized by Starfire with support from the Ohio DD Council and Interact for Health, the Summit drew over 250 attendees from 17 states and 80+ organizations to address loneliness and build genuine belonging in communities across Ohio and beyond.

Grace's story is at the heart of this episode. A docent and researcher at the Museum Center, advocate, and passionate fan of Sabrina Carpenter, Grace shares what it meant to be at an event where people asked about her interests, not her disability. Her family reflects on what it truly takes to build a full, connected life.

Host: Shari Cooper, Ohio Developmental Disability Council Ambassador Guests: Jan Goings (Director of Strategy and Partnerships, Starfire), Grace Cail, Jeff Cail, Kathleen Cail

Key Topics

What Is the Inclusion Seekers Summit? Jan Goings explains how the Summit grew out of years of community-building work at Starfire. With Ohio DD Council support, they hosted this first large-scale, one-day event to bring a diverse group together around reducing loneliness and building real community connections.

Dr. Vivek Murphy and the Epidemic of Loneliness Former U.S. Surgeon General Dr. Vivek Murphy delivered the keynote. Jeff Cail shares how Murphy's accessible style and actionable "take five" framework resonated with attendees and inspired real behavior change.

Grace's Experience: Being Seen Beyond Disability Grace reflects on meeting people who were curious about her passions—women's rights, history, musical theater, and Sabrina Carpenter—rather than her disability. Her family shares how community connection has grown her confidence and amplified her voice.

Storytelling as Community Building The Summit was designed for active participation, not passive listening. Breakout sessions, shared meals, and real-world stories—like Operation Hello's neighborhood events in Middletown—gave attendees both inspiration and new connections to take home.

Reaching Beyond the "Choir" Kathleen highlights why Starfire deliberately invited the general public—not just disability organizations—because Grace's world and the broader community need to intersect around shared interests, not just shared labels.

What Comes Next Starfire is exploring smaller regional summits, story hours, and continued trainings to keep the momentum going and help people take bite-sized steps toward connection every day.

Why It Matters

Loneliness is a public health crisis, and people with developmental disabilities feel it deeply. The Inclusion Seekers Summit is a reminder that the answer isn't more programs: it's community. When people with disabilities are seen as whole people with interests, passions, and gifts, they participate in and shape community. Grace's story shows what's possible when a young woman is surrounded by people who value her voice.

Resources and Links

• Starfire Website
• Ohio DD Council Website
• Learn more about the Inclusion Seekers Summit
• Learn about the ODDC Community Ambassador Program

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