Pediatric palliative care is an important component of the system of care for children with serious illness and their families. Palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical needs during difficult times. However, many children and families who could benefit from palliative care are unable to access it. State Medicaid and Title V Maternal and Child Health Service Block Grant programs are working to address this issue.
What Is Pediatric Palliative Care?
Pediatric palliative care is specialized medical care for children living with a serious illness. Palliative care focuses on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the child and the family. Palliative care is based on the needs of the patient, is used at any age and for any stage of illness, and can be delivered alongside curative care. Palliative care providers offer:
- Expert treatment of symptoms, including stress
- Communication and guidance for difficult and complex treatment choices
- Close communication and coordination with all other doctors and medical teams
- Support for the family and siblings
Medical conditions that could qualify a child for palliative care include but are not limited to genetic disorders, cancer, prematurity, neurologic disorders, and heart and lung conditions.
(Source: The Center to Advance Palliative Care)
In 2022, more than 1 in 5 children (20.8 percent) in the U.S. had a special health care need, representing 15.2 million children. Approximately 45 percent of children and youth with special health care needs (CYSHCN) are covered under public insurance programs, such as Medicaid or the Children’s Health Insurance Program (CHIP). Additionally, 49.8 percent of children served by Title V are CYSHCN. Medicaid and Title V programs share a common goal: to improve the health of women and children. Medicaid/CHIP are common sources of reimbursement for palliative care, covering about 33.1 percent of pediatric palliative care costs. This brief examines the payment and delivery approaches among three state pediatric palliative care programs, highlighting the ways in which states are leveraging Medicaid and Title V CYSHCN programs for these services. Each program plays a different role, which can include:
- Paying for palliative care services
- Administering palliative care services, such as determining eligibility, authorizing services, and managing utilization
- Supporting the workforce by educating palliative care providers about the special needs of children and their families
- Promoting awareness about the availability and benefits of palliative care among families
The California Medicaid program (Medi-Cal) pays for palliative care services provided to both children and adults and oversees managed care organizations’ provision of the services. The California Children’s Services (CCS) program pays for palliative care services provided to select CYSHCN.
The Massachusetts Title V CYSHCN program operates the pediatric palliative care program, pays for palliative care services, conducts outreach to families and referring providers, and engages families in service delivery and program design.
Vermont Medicaid funds program administration and pays for palliative care services authorized by the state’s Title V CYSHCN program. Title V administers the program, fills gaps in program coverage, and coordinates with other initiatives to enhance access to palliative care services for Vermonters of all ages.
California: Medicaid Administers and Pays for Palliative Care Services
In 2006, the California legislature required the state Medicaid agency to establish a pediatric palliative care program, and the Medicaid program (Medi-Cal) began covering palliative care services for children participating in California Children’s Services (CCS) under a section 1915(c) waiver in 2008. CCS provides diagnostic, treatment, and care coordination services to children under age 21 with qualifying medical conditions. Under a contract with the Medicaid agency, CCS determined children’s clinical eligibility for palliative care, authorized services, and managed utilization. One purpose of the pediatric program was to serve as a pilot for a broader program covering both children and adults.
In 2014, the state enacted Senate bill (SB) 1004, requiring the Medicaid agency to “establish standards and provide technical assistance for Medi-Cal managed care plans to ensure delivery of palliative care services [to Medicaid beneficiaries of all ages].” The broader palliative care program launched in 2017, and the section 1915(c) waiver was terminated December 31, 2018. One person who worked on this legislation stated that one of the reasons the bill passed without opposition was “pediatric palliative care had demonstrated high satisfaction rates among caregivers and providers, decreases in hospitalization rates, and either cost savings or cost neutrality.” In its last year of operation, the waiver program served about 217 Medicaid-enrolled children. At that time, the Medicaid agency clarified that palliative care was covered as an Early and Periodic Screening, Diagnostic and Treatment Services service so these children could continue to receive palliative care.
Children enrolled in managed care organizations (MCOs) receive palliative care services from their MCO, while those not enrolled in an MCO — which is a small number of Medicaid beneficiaries — may access the services via Medicaid-enrolled fee-for-service providers. MCOs must meet, and may go beyond, the minimum standards established by the state for the delivery of palliative care services, which are presented in Table 1.
Table 1: California Medicaid Pediatric Palliative Care Coverage Policies, 2024
Children’s clinical eligibility criteria |
|
Provider qualifications | MCO: Each MCO establishes its own requirements but must use “qualified providers for palliative care based on the setting and needs of a member.” FFS: Medicaid providers, including hospice agencies that are licensed to provide palliative care |
Covered services |
|
Payment model | MCO: Each MCO negotiates payment model and amount with providers. FFS: Providers are paid per service for providing palliative care services. |
FFS = fee-for-service; MCO = managed care organization
Sources: (1) California Department of Health Care Services, Palliative Care Billing Policy, December 2022. (2) California Department of Health Care Services, All Plan Letter 18-020, December 2018.
In addition, CCS, which receives Title V funding, will pay for palliative care for children participating in the CCS program who do not qualify for Medicaid. CCS will only pay for palliative services for these children if the palliative care is related to the condition that qualifies a child to participate in the CCS program and if the services are part of a child’s approved plan of care. The program will pay CCS-paneled physicians, hospice agencies, and home health agencies for the same services as the Medicaid program. CCS is funded through state, county, and federal funds, including Title V.
Massachusetts: The CYSHCN Program Administers and Pays for Palliative Care Services
In 2006, the Massachusetts legislature established a pediatric palliative care program using state funding. The Division for Children and Youth with Special Health Needs at the Department of Public Health (DPH) oversees and supports the Pediatric Palliative Care Network (PPCN), which enrolled its first family in 2007. This program provides community-based palliative care services to children who do not have access to the services through their health care plan. Services are free, and there are no income requirements for the program. In federal fiscal year 2022, the program served over 700 children. Providers are chosen via a procurement process. In 2024, DPH contracted with seven providers who, together, offer statewide coverage. In 2024, the legislature increased the age limit for participation from 19 to 22. The legislature also increased the PPCN’s funding from $9.9 million in state fiscal year (SFY) 2024 to $10.4 million in SFY 2025.
Since its inception, the PPCN has continued to develop innovative practices. Two innovations, developed in response to the COVID-19 pandemic, continue because of their value to families:
- Providers began delivering services, including nursing, music therapy, child life, and social work via telehealth. Parents found these services to be an effective way for their child to stay connected during the pandemic.
- Providers established virtual support groups for parents and siblings. Families reported these virtual supports were more effective than in-person supports because they did not need to travel or find child care.
Table 2: Massachusetts Department of Public Health Pediatric Palliative Care Coverage Policies, 2024
Children’s clinical eligibility criteria | Children under age 22 with life-limiting diagnosis whose health plan does not cover palliative care services |
Provider qualifications | Hospice providers that are selected via a procurement process and meet the standards2 established by the Department of Public Health. Among other things these address provider training and experience, program staffing, and delivery of care. |
Covered services |
|
Payment model | Providers are paid on a cost-reimbursement basis |
Source: (1) PPCN website. (2) DPH, Pediatric Palliative Care Network (PPCN) Operational Program Standards, November 2021. (3) DPH Procurement Documents, 2021.
The PPCN program leverages its contractors for outreach to families and potential referring providers. The standards developed by DPH require PPCN providers to “identify 1–2 community and service providers every year who do not know about PPCN or who are seeking information on pediatric palliative care. The PPCN program should then arrange for a presentation about PPCN.” The standards also require contractors to “support and reflect the guiding principles of the Massachusetts Family Engagement Framework,” which provides for extensive family engagement at both the individual and program levels. Additionally, DPH has produced videos featuring families served by the program. Finally, PPCN is establishing a statewide family advisory council to “inform program priorities and provide input on discrete projects,” ensuring that family input has an impact at both the program and local vendor levels.
Vermont: Medicaid Pays for Services Administered by the CYSHCN Program
The Vermont Medicaid program established coverage of palliative care services under the Global Commitment to Health 1115 waiver and funds program administration and pays for palliative care services authorized by the Title V CYSHCN program.
The State Title V CYSHCN program provided input to palliative care program policies, fills in gaps in program coverage, and administers the program. It also coordinates with other initiatives to enhance access to palliative care services for Vermonters of all ages.
In 2011, at the direction of the Vermont legislature, the Medicaid agency secured approval of an amendment to its Medicaid section 1115 waiver, allowing the state to provide palliative care services to children enrolled in Medicaid and the Children’s Health Insurance Program (CHIP). The Pediatric Palliative Care Program (PPCP), which administers all Medicaid-covered pediatric palliative care services, was implemented in 2012.
During planning and implementation, Title V CYSHCN program staff worked with the Medicaid agency to develop policies and procedures that would meet the needs of CYSHCN and their families. Once launched, the Title V program continued to work with the Medicaid agency to foster the PPCP’s success — helping families fill in gaps in coverage such as respite care. In December 2014, the Medicaid agency transferred administration of the PPCP to the state Title V CYSHCN program to “improve continuity of care and collaboration for Vermont children with complex medical needs.” The Medicaid agency continues to pay for the palliative care services authorized by PPCP staff.
As program administrator, Vermont’s Title V program conducts outreach to families of eligible children, determines children’s clinical eligibility, authorizes services, and secures, supports, and oversees the palliative care providers participating in the program. Vermont’s Title V program also conducts evaluation and quality improvement activities, including an annual family survey. Additionally, Title V staff help connect families to resources outside the PPCP. As of January 2024, 56 Medicaid-enrolled children were receiving PPCP services from eight home health agencies. Ongoing challenges related to rural locations and staffing have prevented the program from achieving a fully statewide presence.
Table 3: Vermont Medicaid Pediatric Palliative Care Coverage Policies, 2024
Children’s clinical eligibility criteria | Medicaid beneficiaries under age 21 who are diagnosed with life-limiting illness that is expected to be terminal before adulthood (age 21) |
Provider qualifications | Home health agencies that have met Medicaid’s requirements for care delivery and training, which include pediatric palliative care training and delivering a broad range of services via an interdisciplinary team. Agencies are required to engage in quality improvement activities as needed to improve program outcomes. There are also required qualifications for specific service providers (e.g., therapy providers). |
Covered services |
|
Payment model | Providers are paid per service for providing palliative care services. Most services are billed in 15-minute units. |
Source: Vermont Department of Health, The Pediatric Palliative Care Program, Provider Manual for Home Health Agencies, May 2024.
In addition to their role in development and operation of the PPCP, Title V PPCP staff are engaged in broader efforts to facilitate access to palliative care in Vermont. For example, PPCP staff educate providers who are not PPCP providers about pediatric palliative care through initiatives such as a statewide provider education day. Title V staff have also participated in Vermont’s Palliative Care and Pain Management Task Force since 2013. The task force was formed by the invitation of the Vermont legislature to coordinate palliative care initiatives and enhance access to palliative care in Vermont. Each year it prepares a legislative report, including recommendations for improving access.
Summary
Palliative care can provide relief from symptoms, improve satisfaction and outcomes, and help address critical needs during difficult times — all outcomes of great benefit to children living with serious illness and their families. As these three states illustrate, state Title V CYSHCN and Medicaid programs play important roles in improving the access of children with serious illness and their families to palliative care services.
Acknowledgments
Several NASHP staff, including Karen VanLandeghem, contributed to this brief through input, guidance, and draft review. NASHP wishes to thank the state officials who reviewed a draft of this brief, as well as officials at the Health Resources and Services Administration, Maternal and Child Health Bureau, for their review.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number UD3OA22891, National Organizations of State and Local Officials. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by, HRSA, HHS, or the U.S. government.
