David Deary, Rhode Island
Life changed dramatically for David and his wife when their second son, Caleb, was born with a rare genetic brain malformation that left him profoundly disabled. Early on they met a parent advocate from the RI Parent Information Network (RIPIN) who helped them navigate available resources and also told them about a bill to establish Temporary Caregiver Insurance (TCI), a way for parents like them to draw income while caring for a new or seriously ill child. David became involved and began sharing his story with legislators and the public.
Having a role with the coalition “was very empowering,” said David. “Sharing what our life involved helped us gain confidence in exposing everyone to what normal was for us. We also felt as though we were doing our part for other families like ours struggling to coordinate work, family and being at the hospital.”
“We were thrilled when the bill was passed,” David said. “Our son was at the signing in the state house! We learned, if you want to make an impact, then get out there and make an impact.” In the process, David felt honored to meet the advocates behind the scenes who drive change. “We have learned that most people are inherently compassionate and want to help. But some search for ways to help without being asked. It’s these people that carry the deepest impact.”
