Solomon Center white paper urges Connecticut to expand Medicaid coverage, training for pediatric palliative care

A white paper presented to the Solomon Center Pediatric Palliative Care Workgroup on Oct. 25 urged Connecticut to expand access to pediatric palliative care by changing how the state structures Medicaid (Husky) benefits and by boosting training for non‑specialist frontline clinicians.

The white paper’s author, Elle (Solomon Center staff and white paper author), told the group the paper identified “two major barriers of access in Connecticut today,” naming insurance coverage through Medicaid/Husky and a “lack of training, particularly for frontline non‑specialist clinicians.”

The paper’s primary recommendation for near‑term action is a change to Connecticut’s Medicaid approach. The author said one feasible route is a state plan amendment to explicitly cover palliative care under the Medicaid children’s benefit known as EPSDT (Early and Periodic Screening, Diagnostic and Treatment). That would avoid tying palliative services to hospice’s six‑month terminal‑prognosis requirement, the paper argues, and would make palliative services available to children with special health care needs regardless of hospice eligibility.

The presenter said Connecticut currently has about 300,000 children enrolled in Husky and estimated roughly 50,000 of those children have special health care needs who “may be able to benefit from receiving palliative care at the start of their diagnosis.” The white paper authors recommended using EPSDT language to classify palliative care as medically necessary for eligible children and to pursue a permanent state plan amendment rather than a temporary waiver in the current federal environment.

As an alternative to a federal Medicaid change, the paper also described a Massachusetts model in which the state provides a payer‑of‑last‑resort program, funded primarily by state dollars, to cover palliative services for children whose private insurance or Medicaid does not. The presenter said that model is state‑funded rather than dependent on Medicaid rule changes.

Workgroup participants raised operational questions the paper does not resolve, including how durable home nursing visits, durable medical equipment (DME), respite, and caregiver stipends would be funded under different models. Eileen, a participant who has interviewed parents of medically complex children, reported that Connecticut respite programs generally do not accept medically complex children because staff lack the training to care for them; several parents told her there is no available respite and some had stopped working to provide 24‑hour care.

Jessica (participant; hospice provider) described concurrent care — the provision of hospice services while a child continues curative treatment — as an important existing pathway under federal law that many families and non‑hospice clinicians misunderstand. Jessica said concurrent care can let families receive hospice‑type supports while continuing treatments such as chemotherapy, and she urged the group to focus both on expanding awareness of concurrent care and on the longer‑term goal of a structured amendment or program that ensures stable funding.

Participants also flagged financial and billing challenges. The presenter noted Connecticut still operates largely on a fee‑for‑service Medicaid model (not managed care), which complicates bundling holistic palliative services into discrete billed items. Several participants recommended documenting cost savings (fewer acute care days, fewer readmissions) as part of a federal submission or state budget request; one hospice provider recalled a case in which moving an infant home for hospice care avoided an extended neonatal intensive care unit stay and its high daily cost.

The group identified data and next steps: (1) create a clear crosswalk comparing Husky benefits for pediatric palliative and hospice patients; (2) compile state and other‑state cost models (including DRG/hospital per‑day rates) to build a cost‑neutrality case for federal review; (3) expand clinician education and curricula (academic and professional organizations) to increase frontline competency; (4) explore respite and caregiver stipend models used in other states; and (5) continue stakeholder outreach to DSS/Medicaid and to state legislative allies.

The white paper authors and participants repeatedly emphasized that palliative care should be explained as distinct from hospice in conversations with families to reduce fear of “the H word,” and that framing and education will be central to uptake if coverage is expanded. The workgroup agreed to share documents (including a Husky‑benefit summary and DRG/rate information) and to develop an inventory of data needed for a state plan amendment or state‑funded program.

The meeting closed with staff assignments to gather the requested cost and benefit materials and to draft next‑step language for the advisory group’s review.