Pediatric Palliative Care Policy Framework: Overhaul Medicaid
•February 11, 2026
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Why It Matters
Embedding pediatric respite in Medicaid creates a reliable funding stream, reduces costly hospitalizations, and strengthens family support across the U.S. health system.
Key Takeaways
- •Defines PPCCenter and PPCRespite for Medicaid EPSDT coverage
- •Calls for CMS state director letter mandating coverage
- •Aims to reduce hospitalizations and caregiver burnout
- •Seeks standardized reimbursement pathways and licensure frameworks
- •Supports cost‑effective, family‑centered pediatric palliative services
Pulse Analysis
Pediatric palliative care has long struggled with fragmented funding, leaving families to navigate a patchwork of private pay, charity, and limited state programs. Respite—short‑term, interdisciplinary care that gives families a breather—is especially under‑served, despite evidence that it reduces emergency visits and improves quality of life for children with life‑limiting conditions. By positioning respite as a "medically necessary support" within the Early and Periodic Screening, Diagnostic and Treatment (EPSDT) Medicaid benefit, the new framework directly addresses this funding gap and aligns with broader federal goals of equitable pediatric health access.
The proposal introduces two concrete service models: PPCCenters, purpose‑built community hubs staffed by pediatric‑trained interdisciplinary teams, and PPCRespite, short‑term residential stays ranging from 24 hours to two weeks. It urges the Centers for Medicare & Medicaid Services (CMS) to issue a state Medicaid director letter that codifies these definitions, mandates coverage when medically indicated, and creates standardized reimbursement pathways. By linking respite to existing Medicaid infrastructure, the framework leverages CMS’s 2024 guidance on pediatric reimbursement, offering states a clear template for licensure, billing, and performance measurement without requiring new legislation.
If implemented, the policy could generate measurable cost savings for Medicaid by preventing avoidable hospitalizations and intensive care admissions. Families would gain predictable, reliable access to respite, reducing caregiver fatigue and improving long‑term adherence to treatment plans. Moreover, the formalization of PPCCenters could stimulate workforce development, attracting clinicians specialized in pediatric palliative care and fostering a more resilient care ecosystem. In sum, the framework promises a win‑win: better health outcomes for vulnerable children and a more sustainable, cost‑effective Medicaid program.
Pediatric Palliative Care Policy Framework: Overhaul Medicaid
A newly introduced national policy framework includes proposed changes to pediatric respite and palliative care reimbursement that are designed to improve and grow sustainable access.
The proposal includes establishing new requirements for community-based pediatric palliative care centers and pediatric palliative respite as part of mandatory coverage in the Medicaid provision for Early and Periodic Screening, Diagnostic and Treatment (EPSDT). The framework calls for formal recognition of those services as “medically necessary support” for serious and terminally ill children and their families.
The policy paper was recently released by Children’s Respite Homes of America, the main program of the National Center for Pediatric Palliative Care Homes (NCPPCH). Respite is among the most significant and under-funded needs in the pediatric space, according to NCPCCH CEO and Founder Jonathan Cottor.
“Families have been telling us the same thing for a long time: They are exhausted, isolated and stretched far beyond what the system was ever designed to support,” Cottor told Palliative Care News in an email. “Respite comes up consistently as one of the greatest unmet needs, yet it remains one of the least supported parts of pediatric care from a policy and reimbursement standpoint.”
The policy paper outlined standardized definitions for pediatric palliative care respite (PPCRespite) and a pediatric palliative care center model (PPCCenter) for potential inclusion in EPSDT Medicaid requirements. Current Medicaid EPSDT requirements mandate that states provide coverage for all medically necessary services to pediatric beneficiaries 21 and under.
The framework’s proposed definitions include:
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PPCCenters: Purpose-built, community-based centers that integrate pediatric-trained interdisciplinary teams within a patient’s existing care setting. These professionals are uniquely capable of delivering holistic, developmentally-appropriate palliative care
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PPCRespite: Short-term, interdisciplinary, medically necessary residential care for children with life-limiting or life-threatening conditions. Services are delivered in a PPCCenter to provide stabilized medical support and sustain family caregiving capacity through child- and family-centered care. Typical respite stays can range from 24 hours to 14 days and include services such as skilled nursing, symptom management, expressive therapies and psychosocial support in a home-like environment.
A main goal of the framework is to strengthen family caregiver support, reduce hospitalizations and build up resources for community-based pediatric palliative care nationwide, Cottor said.
Current reimbursement does not provide sufficient support for families, he stated. The issue can result in more pediatric hospitalizations and higher levels of caregiver burnout and distress.
Pediatric palliative care centers are not a replacement for existing services, but rather a “missing layer” of support for families, according to Cottor.
“The biggest takeaway is that families do not suddenly need support at the very end of life. They need it much earlier, and they need it to be dependable,” he said. “This paper helps policymakers see that there are practical and proven ways to address that gap. This work is not about competing with or disrupting existing pediatric palliative or hospice programs. It is about strengthening the ecosystem around them. The policy tools to do this already exist. What has been missing is clarity and coordination.”
The U.S. Centers for Medicare & Medicaid Services (CMS) in 2024 released new guidelines intended to better support state-based pediatric reimbursement systems and help improve equitable health access among youth populations. The new guidance included best practices for state Medicaid programs and the Children’s Health Insurance Program (CHIP) to implement and comply with EPSDT coverage.
Through the new policy paper, NCPPCH has called on CMS to “act now” by releasing a state Medicaid director letter. Proposed mandated changes in the letter include:
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Setting EPSDT service requirements stipulating that PPCRespite is delivered in PPCCenters when medically necessary
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Establishing standardized Medicaid coverage pathways and encouraging state licensure frameworks for PPCCenters
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Supporting inclusion of PPCRespite in future payment demonstrations to evaluate outcomes, utilization, caregiver sustainability and cost impacts
If adopted, these changes could improve pediatric palliative care delivery, reduce Medicaid expenditures and strengthen sustainability, according to NCPPCH. If successful, providers could see improved outcomes and stronger workforce support, Cottor said.
Access to quality respite care is a “fundamental” for pediatric patients and their families, said Betsy Hawley, executive director of the Pediatric Palliative Care Coalition.
Interdisciplinary support is needed across pediatric palliative care and hospital-based specialty teams, Hawley indicated. Equally important are considerations and coordination of practical support for transportation needs and addressing ways to improve equitable hospice and palliative care access, she stated.
Reimbursement systems play a large role in the availability of pediatric respite and palliative care, as well as the ability to expand these resources, according to Hawley. The new policy paper could go a long way in moving the needle toward improvement, she said.
“The National Policy Framework offers a strong blueprint for reducing these barriers and building effective, family-centered respite support,” Hawley told Palliative Care News in an email. “Stronger Medicaid reimbursement would create a clearer, more reliable pathway for benefits to follow children and families where care is needed most — including respite — rather than forcing families to navigate fragmented and complicated systems. Strengthening Medicaid reimbursement helps ensure that all of these critical services work together to support children and families more effectively.”
The post Pediatric Palliative Care Policy Framework: Overhaul Medicaid appeared first on Hospice News.
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