Solomon Center White Paper Outlines Options to Expand Health Care for Children Living with Serious Illness

As state lawmakers consider establishing a statewide pediatric palliative care program, a new white paper from researchers at the Solomon Center for Health Law and Policy at Yale Law School recommends ways that access to palliative care can be improved for Connecticut’s estimated 7,000+ children living with serious illnesses.

Addressing Urgent Coverage Gaps

Currently, Connecticut children can be referred for pediatric palliative care immediately upon diagnosis with a life-limiting illness, but HUSKY (Connecticut’s Medicaid/CHIP program) and most private insurers only provide coverage once a child receives a six-month terminal prognosis — essentially limiting coverage to when a child becomes eligible for hospice.

As a result, families are forced to either wait until a child is hospice-eligible or rely on limited coverage through fragmented waiver programs. This falls far short of meeting the needs of seriously ill children, many of whom experience unpredictable illness trajectories and may never receive a six-month prognosis.

The report identifies two promising coverage pathways for Connecticut:

• pursue a State Plan Amendment through the Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) benefit, which could expand coverage to a broader population of pediatric patients; and
• create a fully state-funded benefit — which would offer the most comprehensive coverage for both patients and services.

Strengthening Provider Training

The white paper also addresses the critical shortage of clinicians statewide trained in pediatric palliative care. Most pediatric providers receive little or no formal training in basic palliative care skills, leading to delayed referrals and inadequate symptom management.

As the white paper stresses, even with successful policy reforms that broaden coverage, access will remain limited if clinicians lack essential palliative care competencies.

The report recommends three key measures:

• incorporating palliative care competencies into medical and nursing curricula;
• mandating or incentivizing ongoing training for established clinicians; and
• establishing a state-funded Center of Excellence to serve as a training hub and coordinate statewide workforce development.

Timely Support for Legislative Action

The white paper’s release comes at a crucial moment for Connecticut policymakers. The Connecticut General Assembly created the Connecticut Pediatric Hospice Task Force in March 2024, which issued a preliminary report in March 2025 identifying over 7,000 children in the state with serious illnesses, alongside potential reforms to better serve them. The Task Force’s final report is expected next year, positioning the legislature to act in 2026.

“Now is the time for Connecticut to consider how it can create an effective pediatric palliative care program,” said Jeremy Pilaar ‘18, executive director of the Solomon Center. “This white paper supports that important work by identifying key reforms the state can implement to ensure that children with serious illnesses and their families can obtain the care they need.”

Evidence-Based Benefits

Research demonstrates that palliative care provides significant benefits for patients and families, including better symptom control, fewer emergency visits, and enhanced family well-being. Unlike hospice care, palliative care is beneficial at all stages of illness and addresses not only physical symptoms but also emotional, psychosocial, and spiritual needs of patients and their families.

“The combination of coverage expansion and improved provider education outlined in our white paper would position Connecticut to reduce suffering among the state’s most vulnerable children while strengthening overall pediatric care outcomes,” said co-author Elle Rothermich, deputy director of the Solomon Center.  “In doing so, the state could become a national leader in this vital field.”

The paper’s co-authors are available for interview on these issues.

About the Solomon Center for Health Law and Policy

The Solomon Center for Health Law and Policy at Yale Law School is the first of its kind to focus on the intersection of law and the governance, practice, and business of health care. The Center brings together leading experts and practitioners from the public and private sectors to address cutting-edge questions of health law and policy, and to train the next generation of top health lawyers, industry leaders, policymakers, and academics.