Chapters Health System, one of the nation's largest nonprofit hospice providers, has received a $150,000 grant from the B. Thomas Golisano Foundation to pilot a program addressing a significant gap in end-of-life services for children with intellectual and developmental disabilities.
The initiative, called "Advancing Inclusive Pediatric Hospice Care," will be implemented at Hope Healthcare in Fort Myers, a Chapters affiliate. The program will embed a Certified Child Life Specialist and a Hospital-Hospice Liaison to address the unique needs of children with developmental disabilities.
"Many pediatric hospice programs have been designed with a particular patient profile in mind, and that profile hasn't always accounted for the diversity of how children develop, understand their circumstances, and find comfort," said Andrew Molosky, president and CEO of Chapters Health System. He described the grant as a prototype that could scale across the organization's national network.
Children with significant intellectual disabilities experience pain differently, communicate differently, and require different language from caregivers. Their families face distinct forms of grief and anticipatory loss that existing systems have often failed to address.
The program incorporates therapeutic play, counseling, anticipatory grief support, and bereavement services. It also improves care coordination, reducing the need for families to repeat their stories to multiple providers.
Erica Dayton, executive director of the Golisano Foundation, emphasized the goal of creating a "best-practice framework" that other organizations can adopt. The foundation, founded by entrepreneur Tom Golisano in 1985, dedicates roughly $5 million annually to organizations serving people with intellectual and developmental disabilities.
Pediatric hospice is already a specialized field. Services specifically designed for children with developmental disabilities have been even more rare, sometimes requiring parents to educate their child's hospice team about their child's particular needs.
For children with developmental disabilities, therapeutic play becomes a primary language for processing difficult emotions, as traditional talking therapy may not be effective. Trained child life specialists understand how to meet a child at their developmental level rather than their chronological age.
Bereavement support extends beyond the moment of death. Parents of children with developmental disabilities often serve as caregivers in ways that shape their entire identity, and anticipatory grief can begin years before the end of life.
Chapters Health System operates more than thirty companies and programs ranging from traditional hospice to managed care to technology solutions. The grant represents confidence that the organization can integrate new inclusive practices successfully across its large operation.
