House Bill Would Create Pediatric Hospice Benefit within Medicaid

Reps. Michael McCaul (R-Texas) and Diana DeGette (D-Colo.) have introduced a bill in the U.S. House of Representatives that would create a dedicated hospice and palliative care benefit within Medicaid for terminally ill children. If enacted, the Children’s Program of All-Inclusive Coordinated Care (ChiPACC) Act of 2021 would allow pediatric patients to receive those services concurrently with curative treatments. 

Medicaid currently does not cover palliative care in most states. Although other payment models do allow concurrent care for children, that is often not the case within Medicaid.

“Families of children with life-threatening conditions should not have to worry if their child will receive proper care,” McCaul said. “This vital piece of legislation will give children and their families access to proper medical care from the very start to give the child a fighting chance.”

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Like the current Medicare Hospice Benefit, the pediatric program would require certification of a six-month terminal prognosis. If the legislation were to become law, the bill would cover palliative care, counseling, respite care, expressive therapy and bereavement care.

The majority of hospice patients are seniors by far, but providers are recognizing and responding to a growing need for pediatric services. As more families learn about the nature of hospice — and as more health care moves into the home setting — demand is escalating.

The needs of seriously and terminally ill children are distinct from those of adults. Providers need specialist knowledge regarding medication dosing, specialized equipment and assistance with family dynamics and support. Current data on pediatric hospice utilization are scarce, but indicators suggest that expansion of these services is underway throughout the hospice industry.

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The 2015 Institute of Medicine report “Dying in America” identified a significant increase in the proportion of pediatric deaths that occur in the home. This is part of a larger shift towards home-based care that has accelerated during the COVID-19 pandemic.’

“No parent should be required to give up hope in order to give their child the comfort they deserve,” DeGette said. “This bill will provide families the services and support they need to ensure their children receive the best care possible.”