Advisory council finalizes pediatric palliative recommendations, seeks $3.5 million and eyes New Jersey Medicaid model

The advisory council meeting focused on next steps to expand pediatric palliative and hospice care in Connecticut, with members finalizing recommendations and proposing funding to build workforce and community-based services.

Tony Ann, a member of the pediatric legislative work group, said the group is finishing edits to a report that recommends improving pediatric hospice services and establishing a "Champion Care" framework to direct families to palliative resources, bereavement counseling and related supports. "Champion care will be a pathway for anyone, parent, grandparent, anyone that needs some type of direction," she said, describing the model as a repository to help caregivers navigate palliative care and hospice options. The work group plans to ask for funding "about $3,500,000 over two years" to implement training, workforce supports and the Champion Care infrastructure.

The recommendation also includes measures to integrate palliative care into the state system rather than limiting attention to hospice alone. "Palliative is absolutely involved in that," Tony Ann said, noting the group intends to address rates and coverage in a later implementation phase.

Members spent substantial time discussing New Jersey's recent action to add community-based palliative care under Medicaid through a State Plan Amendment (SPA). Eugene, who summarized the policy work, said New Jersey's approach required state legislation directing the health agency to submit an SPA to the federal government; unlike some Medicaid waivers, an SPA can make a permanent change to what Medicaid covers. "New Jersey created a community based palliative care benefit through Medicaid following a state plan amendment process," Eugene said, adding that providers were able to register with the state beginning Feb. 1 and that, as he understood it, the benefit would begin to be usable by April 1. He emphasized that implementation details'who provides care, how agencies bill and when patients may be admitted'remain central to success.

Council members voiced support for including the New Jersey model in their recommendations to the legislature. Barbara posted links to the New Jersey legislation in the meeting chat and members agreed to incorporate relevant elements into the council's final report, which Tony Ann said would be sent to the legislature once final edits are complete.

The council also discussed workforce education and training as a necessary complement to payment reform, and members signaled intent to press for sustainable reimbursement to grow community palliative teams. Tony Ann said the group expects to have a final report ready for submission to the legislature by Monday or Tuesday following the meeting.

Next steps: the work group will finalize its report and include references to New Jersey's SPA approach in the recommendation packet the council will forward to the legislature.