Connecticut workgroup details survey results, data gaps and funding need for pediatric palliative and hospice program

A state advisory workgroup on pediatric palliative and hospice care reviewed a recent survey of licensed home‑care agencies, described persistent gaps in data and workforce capacity and reported legislative outreach that lawmakers asked to be translated into draft bill language to “hold the place” for a program.

The workgroup’s survey, presented by Barbara (staff member), received 26 responses from an estimated 88 licensed home‑care agencies in Connecticut and found most respondents do not currently provide pediatric services. The group and outside legal partners have discussed a range of policy options, from a state‑run hub‑and‑spoke program modeled on Massachusetts to smaller, targeted training efforts; participants said funding is central to any viable approach.

Why this matters

Workgroup members told lawmakers and legal advisers they need better and more complete data, and that agencies capable of pediatric palliative or hospice care are few. Members warned that most pediatric referrals currently come through hospital palliative teams or from out‑of‑state hospices serving families who live in Connecticut, and that Medicaid reimbursement rates and limited numbers of certified pediatric hospice nurses make long‑term expansion difficult without state support.

Survey findings and data gaps

The survey results reported to the group: 26 agencies responded. Of those, about half reported…