25 Jun A Voice for Lily: How CHOP Transformed a Young Girl’s Life

For any 8-year-old, expressing emotions and needs can be challenging. For Lily Alcinay, it was nearly impossible.

Lily, who is on the autism spectrum and has an intellectual disability, language delay, and motor delay, struggled to communicate her basic needs—even with her mother, Shelley.

“Lily would get out of bed and drag herself on her stomach, crying and screaming the whole way. I knew she had to go to the bathroom, so I’d sit her on the toilet,” Shelley said. “As soon as she was done, she’d be back on the floor, screaming.”

Shelley and Lily’s care manager sought Applied Behavioral Analysis (ABA) therapy, an evidence-based intervention that could provide Lily with essential communication tools. However, the Department of Social Services (DSS) refused to fund the therapy and suggested billing Medicaid. But when the care manager reached out to multiple ABA therapy providers, none of them accepted Medicaid.

With nowhere else to turn, Shelley applied for assistance through the Community Health Outreach Project (CHOP), a grant program administered by the Cerebral Palsy Associations of New York State (CP State) and funded by the Mother Cabrini Health Foundation. CHOP helps individuals with disabilities access critical supports—like therapy, medical equipment, and services—when all other funding options have been exhausted. Since its launch in 2020, CHOP has awarded approximately $3.4 million to help 7,200 individuals statewide.

Thanks to CHOP, Lily received funding for ABA therapy. Her therapists also introduced the Picture Exchange Communication System (PECS), an augmentative and alternative communication (AAC) tool that helps individuals—especially those with autism—express their needs using pictures or symbols.

“ABA taught me to pull back, take pauses, and WAIT,” Shelley said. “So now, I step back and let Lily make her own decisions.”

The results have been life-changing.

“She can communicate now,” Shelley said. “She’s a participant in her own life.”

The little girl who once dragged herself across the floor in frustration is gone. In her place stands a child who is learning, growing, and expressing herself in ways her family never imagined.

“It’s been a life-changer,” Shelley said. “I’m grateful as a mother, as a wife, and as a person.”

Without CHOP and the Mother Cabrini Health Foundation, she said, Lily would have lost so much potential.

“She would have been trapped,” Shelley said. “Instead, she has a voice.”