Johnston County Mother Shares Son’s Story While Advocating For Disability Services

CLAYTON, N.C. – A Clayton mother is sharing her family’s story in hopes of bringing attention to the growing number of North Carolina families waiting for disability services and struggling to find caregivers.

On April 29, Brittney Tillman and her 11-year-old son, Miles, spoke before the Intellectual and Developmental Disabilities Legislative Caucus in Raleigh to advocate for increased Medicaid funding, improvements in workforce conditions for caregivers, and reductions to the state’s Innovations Waiver waitlist.

Tillman, a board member with the North Carolina Fragile X Foundation, said more than 20,000 people in North Carolina are now waiting for services through the Innovations Waiver program — an increase from approximately 18,000 last year.

During her remarks, Tillman shared her family’s experience raising Miles, who has Fragile X Syndrome, autism and ADHD.

“But if you met him, the first thing you’d notice isn’t his diagnosis — it’s his joy,” Tillman told lawmakers.

She described Miles as outgoing and energetic, with a love for singing, politics, church activities, hiking, bowling and the Special Olympics.

“Give him a stage and a microphone, and he will proudly sing the national anthem or a song from a musical like he’s on Broadway,” she said.

Tillman said her son’s developmental disabilities also create daily challenges. Miles struggles with anxiety, has no sense of danger, and requires assistance with basic daily tasks including bathing, brushing his teeth and using the bathroom.

For nearly eight years, the family remained on the Innovations Waiver waitlist before finally receiving services.

During that time, Tillman said she left her job as an educator to become Miles’ full-time caregiver, balancing therapy appointments, medical care and developmental support while dealing with anxiety, depression and burnout.

After receiving the waiver, Tillman said services have made a significant difference.

At his father’s home, Miles has a caregiver who has become a close mentor and friend.

“He’s teaching Miles how to cook, pay for things at the store, dress himself, and build independence,” Tillman said. “These are life-changing skills — not just for today, but for his future.”

But despite qualifying for services, Tillman said she has been unable to find a caregiver for nearly a year at her own home because of staffing shortages.

“Not because we don’t want one. Not because Miles doesn’t qualify,” she said. “But because there simply aren’t enough workers.”

Tillman told lawmakers the shortage places tremendous pressure on families who often juggle caregiving responsibilities alongside jobs and other obligations.

“And for many families, it means leaving the workforce altogether,” she said.

Tillman and Miles also met with N.C. Representative Erin Paré during their visit to the legislature.

She said she hopes sharing their story will help lawmakers understand the real-life impact behind policy decisions involving disability services.

“Those on the wait list are not just numbers,” Tillman said. “These are individuals like Miles. Families like mine.”

Tillman said support services and consistent caregivers can help individuals with intellectual and developmental disabilities become more independent and better connected to their communities.

“Miles has so much to offer this world,” she said. “He just needs the right supports to get there.”