Special needs planning is not part of our story. It’s our whole story.

Since 2025, I have served as a general board member of RESTkc, a Kansas City nonprofit that supports families raising children with medical complexities. The parents in these families carry a relentless load, and too often they are the ones no one thinks to care for. RESTkc was built to change that, offering practical assistance and caregiver-wellbeing services across four tiers — Renewal, Empowerment, Support, and Time — so families can reset, restore, and reconnect. I joined the board because these caregivers deserve understanding rather than sympathy, and real support rather than good intentions. My work there is dedicated to building a community where the people who give so much care are finally able to rest.

After serving two full consecutive terms on the Kansas Council on Developmental Disabilities, I have stayed engaged in the work at the national level through the National Association of Councils on Developmental Disabilities (NACDD), attending monthly meetings. NACDD connects the state developmental-disabilities councils across the country, advancing the policy and practice that empower people with developmental disabilities, their families, and their allies to build welcoming communities — grounded in the principle that every person has the right to a self-directed life in the community of their choosing. I stay at the table because the families we serve deserve an advocate who understands the systems shaping their future, not only the plans in front of them.

The Family Advisory Board brings the family perspective into how the hospital operates — the kind of room where decisions get made about what care feels like from a family’s side of it. I serve because a similar gap exists in financial services, and someone has to sit in the room and name it.

POPS pairs parents who are early in this with parents who are further along. I mentor families through a new diagnosis, the return to school, and the long-term care questions that surface once the immediate crisis passes. It is the conversation I wanted in 2010 and could not find.