Never Fade Away: Untold Stories of Developmental Disability

David & Susan: Revolutionizing Developmental Disability Services, Rights and Visibility

Meet David and Susan, who have decades of experience between then leading LADD, one of the most innovative and revolutionary disability services organizations in the USA.   How do you move from institutions and segregation to true community inclusion? In this special episode of Never Fade Away, host Kate Siahaan-Rigg interviews former LADD Executive Director David Robinson and current CEO Susan Brownknight about the philosophy, innovations, and hard-fought battles that transformed disability services in Ohio and beyond. David shares how he spent 24 years challenging traditional assumptions about disability, fighting for community integration, independent living, home ownership, and opportunities that many people once believed were impossible for adults with developmental disabilities. Susan reflects on how those principles continue to guide LADD today through groundbreaking Smart Living Systems, AI-assisted supports, and new housing models designed to maximize both safety and independence. Together, they explore: * The closure of institutions and the rise of community living * Why "dignity of risk" matters * The challenges families face in balancing safety and independence * How technology is transforming disability supports * What the next 50 years of disability services may look like This conversation is both an oral history and a roadmap for the future.

Lynne: Reclaiming Life after The Orient State Institute

Lynne survived things most people cannot imagine. In this episode of Never Fade Away, Lynne shares her firsthand memories of living with an undiagnosed developmental disability inside the infamous Orient State Institute, where residents were identified by numbers instead of names, forced into labor, and denied dignity and family connection. But this is not only a story about institutionalization. It’s also a story about resilience, music, art, independence, and self-determination. After living through childhood bullying, devastating car accidents, and abuse she endured after leaving Orient, Lynne shares her steps on the journey toward building a life of her own. Today, she lives independently, sings in a choir, creates art, does her own laundry, and proudly advocates for people with disabilities to be treated with respect. Produced with LADD, this episode is a powerful oral history about endurance, dignity, and finding joy after unimaginable hardship.

Phyllis: Phyllis: The Life and Calling of Direct Support Professionals

In this episode of Never Fade Away, host Kate Siahaan-Rigg speaks with Phyllis, a direct support professional and coordinator at LADD in Cincinnati who has spent more than four decades working alongside people with developmental disabilities. Through Phyllis’s story, we hear not only the evolution of a career—but the evolution of an entire field. She shares vivid stories from the field—moments of humor, challenge, and hard-earned wisdom—including early gaps in training, encounters with exploitation, and the critical role of today’s abuse registry in protecting vulnerable individuals. The conversation also confronts the painful history of institutionalization, as Phyllis reflects on visiting the former Orient State Institute—an experience that revealed the stark contrast between segregation and the community-based model LADD continues to build today From her early days learning hands-on care in specially designed accessible homes, to helping individuals navigate public transportation, employment, and independent living, Phyllis reframes what this work truly is: not caregiving, but coaching, teaching, and advocating for full participation in society. This episode explores: *  The real role of a Direct Support Professional (DSP)  *  How disability services have evolved over 45 years  *  The legacy of institutional care and why it matters today  *  Advocacy, independence, and community integration  *  Why respect—not pity—is the foundation of this work  About LADD: LADD empowers adults with developmental disabilities to live, work, and connect. Through housing, employment, and advocacy programs, LADD supports individuals in building independent, meaningful lives within their communities.

Edwina: Hard Truths about being sent to an "Institution"

In this episode, we meet Edwina, who shares a powerful and deeply personal account of her childhood, beginning when she was taken from her home at the age of nine or ten and placed in the Columbus State School, where she lived for twelve years.  Some of these recollections are difficult, emotional and candid so listeners should be prepared for her unvarnished truth.  Edwina recalls being transported in a sheriff’s car and suddenly separated from her family, without a clear explanation for why she was institutionalized, other than being described as “slow at school.” Inside the institution, she describes a life that felt “like being in jail”: crowded dormitories with dozens of children, standing outside in line for food regardless of the weather, limited education, and constant loneliness. She remembers crying at night and praying for answers about why she had been sent away.  The conversation explores the broader history of institutionalization in the United States, when many families were advised by doctors and educators to place children with developmental disabilities in state facilities.  After leaving the institution at age twenty-one, Edwina eventually found greater independence through LADD, where she learned everyday living skills and moved into community housing, where she still lives and thrives today.

Tim: Living and Thriving with Cerebral Palsy

In this week's episode, I am talking to Tim, an avid sports fan and a popular employee at LADD. Currently living on his own, he’s the winner of the Spirit of Independence Award. Tim shares insights into life as a person with cerebral palsy, discussing growing up with a service dog, education with and without the assistance of aides in the classroom, and challenges like moving out for the first time, learning to cope with anxiety, and the significance of speaking up for oneself. This is his story. You can watch a captioned video of the interview on the LADD youtube channel.