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 offering hospice services approved by the state Department of Public Health, but a large majority reported not providing pediatric services. Reported highlights from Barbara’s presentation: 53% of respondents said their agency provides hospice services approved by the Department of Health; 46% said they do not. On pediatric services specifically, 76% of respondents said they do not provide pediatric services; 23% said they do. Among agencies that reported pediatric services, the forms of care cited included medically complex care and acute pediatric care.

Participants said the sample is small and the workgroup needs more responses to draw reliable statewide conclusions. The presenters described active outreach: follow‑up phone calls, reminders, and offers to contact individual agencies directly. The workgroup noted existing data from Yale Law Group and selected partners but said important fields are missing and that some potentially relevant sources would require tailored requests to state Vital Records and other data stewards.

Workforce, reimbursement and operational constraints

Workgroup members identified several recurring operational constraints: workforce shortages (qualified pediatric hospice nurses are rare), low patient volume for strictly pediatric hospice care, and reimbursement limits that leave many agencies unable to cover the cost of specialized staff. Participants reported that some providers see many cases paid by Medicaid and cannot match higher out‑of‑state rates that draw clinicians or patients across borders. The group emphasized that these factors make expansion financially unsustainable without targeted funding.

Legislative outreach and next steps

Members reported meeting state legislators in person, including Senator Anwar and Representative McCarthy Vahey, and said the legislators requested draft bill language early in the session. The workgroup described two broad policy approaches under discussion: (1) a centrally funded state program operating as a hub that deploys cases to participating agencies (a hub‑and‑spoke model), and (2) targeted investments in workforce development and a Center of Excellence to deliver training and shared resources. Participants said lawmakers asked for language that would preserve a place on the legislative calendar while the workgroup continues to gather data and refine policy details.

Member priorities and practical recommendations

Workgroup members prioritized: (1) funding tied explicitly to workforce retention, recruitment and training (including pediatric hospice certification); (2) better, standardized data collection across state systems to show incidence and service gaps; (3) outreach to pediatric clinicians and hospitals to improve referral pathways and public awareness; and (4) a clear mechanism for assigning cases geographically if a hub model is adopted.

The group debated whether to run a new pilot project or to advance program language now with a commitment to follow up. Several participants warned a pilot might delay urgent legislative action; others said a focused pilot could produce the operational details needed to implement a larger program. Members agreed to prioritize drafting legislative language that signals a state commitment while continuing to collect agency data and convene partners.

What the group will do next

The workgroup will: (a) seek additional survey responses from licensed home‑care agencies (outreach and phone follow‑ups are planned), (b) coordinate a short summary of the survey and service counts from participating providers to include with the draft legislative language, (c) approach Vital Records and other data holders about targeted data requests, and (d) prepare draft bill language to “hold the place” with legislators while work continues on program design and funding scenarios.

Ending

Members said they will circulate a written set of recommendations and data summaries to workgroup participants for review, then forward the draft language and accompanying materials to legislators. The group emphasized that, without dedicated funding to address reimbursement and workforce shortages, members do not expect a durable expansion of pediatric palliative and hospice services statewide.