Massachusetts Ramping Up Pediatric Palliative Care Funding

Massachusetts legislators recently allocated more than $8.7 million in the state’s 2023 fiscal year budget to support pediatric palliative care access.

The funding is intended to support expanded palliative care services for seriously and terminally ill children amid rising demand.

Massachusetts State Sen. Sal DiDomenico has been a primary advocate of pediatric palliative care in the state’s legislature. These services can be a “game changer” for patients and families in need, according to DiDomenico. But many children were placed on waitlists for care without enough providers in the state to support demand, with a lack of funding at the core of the issue.

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“We started this about a decade ago, seeing a lot of children on waiting lists to get pediatric palliative care in local hospitals,” DiDomenico told Hospice News. “A lot of the families were looking for these services but weren’t able to receive them because they just weren’t there. Funding was an issue all along. We’ve been incrementally building it up, making sure that every year we put enough money in the budget to clear the waiting list.”

Before these funds were available, families in need of serious illness care didn’t know where to turn, often facing complex medical situations without supportive services, he added. The annual infusion of dollars has increased awareness and gained more public attention around pediatric palliative care, said DiDomenico.

The number of patients in need and the amount of funds to support them has grown statewide each year, he stated. Last year the state appropriated $6.5 million towards pediatric palliative care, a rise from $2.6 million allocated in the state’s budget during 2018.

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Children and families in Massachusetts access these services through providers in the state’s Pediatric Palliative Care Network, which provides care for youths facing life-limiting illnesses. Services provided through the program include consultation for pain and symptom management, nursing services, mental health counseling, family support and bereavement care.

Year after year, the program has been underfunded and has faced issues of limited resources, leaving providers unable to serve all the children and families in need, said DiDomenico.

A similar trend exists across the United States. As of last year, 15 states have legislation in place aimed at creating or expanding palliative care, reported the National Academy of State Health Policy. Few of these, however, have specifications built in to support pediatric populations.

But momentum has been building across the country as legislators increasingly hone in on serious illness care for youth populations. For example, Illinois in May passed a bill that requires private insurers and Medicaid plans in the state to include a community-based pediatric hospice and palliative care benefit, creating a revenue avenue for providers.

At a federal level, the Children’s Program of All-Inclusive Coordinated Care (ChiPACC) Act was introduced in Congress in 2020. The legislation aimed to establish a pediatric hospice and palliative care benefit within Medicaid for terminally ill children.

Though the bill died in committee, the care model it proposed has been implemented in a number of states, including Florida, California, Colorado, New York and North Dakota. These programs have received some federal funds, as well as technical assistance, from the U.S. Centers for Medicare & Medicaid Services (CMS) and Children’s Hospice International.

DiDomenico told Hospice News that members of the Massachusetts legislature plan to continue building out pediatric palliative care so that “no family or child is ever waiting on a list for care.”

The senator is currently working on legislation to ensure permanent support of the state’s pediatric palliative program. He recently proposed a bill (S.2590) that would remove the “subject to appropriation” language in the current statute, said DiDomenico.

If passed, the legislation would expand the age of program eligibility from 19 to 22 and also require the state’s Department of Public Health to report caseload information and projected spending on a quarterly basis to legislators in order to sufficiently fund and secure resources, he explained.

“We’ve been successful every year, but at some point, we need to change how we do this, regardless of who’s advocating for it in the Senate,” DiDomenico told Hospice News. “We want legislation written into law so that we wouldn’t have to do this budgeting every year and a statute is set in place to provide these services to our children. That’s the goal of this legislation: to guarantee that adequate funding for this program is always made available so all eligible children and families have access to these vital services.”

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