Members of the Pediatric Palliative and Hospice Working Group met virtually to discuss barriers and design elements for an integrated pediatric palliative-plus-hospice model for Connecticut, a concept participants called “Champion Care” or “CHAMPS.” The group agreed to concrete next steps: the Department of Public Health (DPH) will draft and circulate a survey of licensed home‑care and hospice agencies, DPH staff offered to map provider capacity across the state, and the group scheduled a follow‑up meeting for Jan. 29 to review data and a draft report.

The proposal matters because panelists described a small statewide workforce and multiple practical barriers that keep medically complex children in hospitals or on waiting lists instead of receiving coordinated in‑home care. “That seems to be the major barrier that we're seeing,” said Jasmine (workgroup member), summarizing repeated comments that finding an agency willing and able to provide pediatric care at home is often the limiting step.

Participants outlined three broad priorities for the report: create a training/center‑of‑excellence to grow the workforce, build a statewide mapping system of agencies and capabilities, and reframe or merge palliative and hospice offerings so families can access services earlier without the stigma or strict six‑month hospice prognosis. “I think I heard were 3 recommendations that we should at least discuss for consideration in the report,” said Barbara (workgroup member). Doctor Moss (palliative clinician) noted a key regulatory and cultural barrier: “the 6 month designation for hospice is actually more of a challenge sometimes for the provider,” and described how removing or reframing that requirement (as in pilot programs elsewhere) can let clinicians enroll children in hospice‑level supports earlier in the illness course.

On workforce, members proposed clinical rotations and partnerships with universities to create pipelines into pediatric palliative care. Regional Hospice volunteer Melissa, who prepared the meeting’s summary slides, described the branding and synthesis work: “she was able to put this together,” referring to the PowerPoint that framed the discussion. Several attendees suggested targeted clinical rotations with Fairfield University, Sacred Heart and Connecticut hospitals and discussed loan‑forgiveness or retention incentives to keep trained nurses in the state.

Panelists also reviewed data needs. A presenter reported there are roughly 14 pediatric‑certified palliative or hospice nurses in the state and that the Katie Beckett Medicaid waiver wait list may include hundreds of children; participants agreed that better counts of (a) children who could benefit, (b) provider capacity, and (c) payer coverage gaps (private insurance, Medicaid, Medicare rules and DME coverage) are essential to estimate scale and cost. DPH staff volunteered to draft a short survey to ask licensed home‑care and hospice agencies when they last served complex pediatric cases and how many they treated in the past year, rather than a binary “do you serve pediatrics?” question.

Regulatory questions flagged by the group included how federal OASIS requirements and Medicare/Medicaid billing rules might affect a model that offers home palliative services to children without converting an agency’s entire adult caseload. A DPH representative offered to review the state’s home‑care and hospice regulations under revision and to report back on potential roadblocks or fixes the working group could recommend.

Next steps enumerated by participants include: DPH will circulate a draft survey for the group’s input; DPH will produce a geographic map of licensed hospice and home‑care agencies; working‑group members will collect examples from other states (California and Washington pilots were cited); and the group will reconvene for an in‑person or hybrid meeting in Hartford on Jan. 29 to review survey results and draft recommendations. No formal votes or policy changes were taken during the session.

The working group emphasized that any eventual model should be family‑centered and permit fluid movement between palliative supports and hospice services as a child’s needs change, while addressing practical obstacles—agency capacity, DME and pharmacy delivery, transportation and payer coverage—that currently prevent many children from receiving care at home.