Members of Connecticut’s pediatric palliative care action committee discussed funding, workforce and messaging strategies on a call where participants said families’ needs have outpaced existing services and outlined options including using hospice with concurrent care, pursuing Medicaid changes and rebranding services to reduce stigma.

Eileen (researcher), who is analyzing interviews with affected families, said the qualitative findings are “heart‑wrenching.” “I interviewed 8 parents. They were all moms via Zoom, and I’m analyzing the data now, but it’s heart wrenching,” she said, adding that families are running into gaps in workforce and coverage.

The discussion centered on three immediate barriers committee members repeatedly raised: a limited workforce to deliver pediatric palliative services, inadequate private‑payer coverage compared with Medicaid, and the need for clearer public messaging so families and clinicians know what services are available. “We just have outpaced the resources in the community,” Eileen said. Several participants urged a mix of short‑term steps (education, pilots) and longer policy changes (Medicaid waivers or state plan amendments).

El (task force member) outlined options for the Medicaid funding question, noting that Connecticut currently runs Katie Beckett as a waiver and that a state plan amendment could remove the enrollment cap. “Currently, Connecticut has a Katie Beckett set up as a waiver. There’s another option where it can become a state plan amendment, and what that generally means is that there’s no cap,” El said. The group also discussed the possibility of a Katie‑Beckett‑like waiver or a legislative mandate requiring private insurers to cover palliative services.

Several speakers said Medicaid (referred to in the meeting as Husky) already provides broader coverage for many families than private insurance. “Most of our patients have Husky,” Eileen said in response to a question about payers. Committee members described examples in which families with private insurance were unable to secure routine home nursing after a child received a gastrostomy tube, while families on Medicaid were more likely to receive needed services.

Participants described a $1 million state allocation currently being used by a regional hospice as a potential model for a pilot. One member said that the state grant provided a concrete example: “I can say, okay. It cost me that million that we got from the state this year. This is what we did with that million, and this is how many kids we were able to take care of.” That example framed discussion about whether hospice could be used as the operational vehicle for pediatric palliative services while policy changes on palliative coverage are pursued.

Several members advocated rebranding to reduce stigma and increase family acceptance of services. Committee members used the working terms “champion care” and “Champion Connecticut” as examples of nomenclature intended to separate the service identity from the public perception that hospice only means imminent end‑of‑life care. “If we really are in the measure of hospice being where it’s at … we need to change the narrative,” one participant said, arguing that names and marketing influence family acceptance.

The committee also prioritized data collection and case review as immediate, actionable items. One contributor said a data‑collection white paper and more systematic case reviews could be an early deliverable for the legislature that would be inexpensive relative to longer‑term funding asks. Participants proposed a two‑part February report that would 1) catalog current capacity and what can be done with existing resources, and 2) outline what additional funding, statutory changes or pilot models would be needed to reach a higher standard of care.

Next steps the group agreed to pursue include drafting a Feb. 6 report for the public health chairs and appropriations stakeholders, reaching out to payers for meetings, collecting more detailed payer and utilization data (including from Community First families and state agencies), and developing a branding/education strategy to pilot with the current state funding. Several members volunteered to gather additional information from state agencies and academic libraries to support cost and utilization estimates.

The meeting produced no formal votes or motions; participants left with a timeline and a set of research and outreach tasks to support the Feb. 6 report.