In 2023, the Hospice and Palliative Care Association of New York State (HPCANYS), The Coalition to Transform Advanced Care (C-TAC), C-TAC Innovations, and TFA Analytics announced their collaboration on a project to develop a comprehensive set of policy recommendations to expand access to palliative care services for adults, children, and their caregivers throughout New York State. This initiative is funded through grants from The Fan Fox and Leslie R. Samuels Foundation, the Ralph C Wilson, Jr. Foundation, and the Mother Cabrini Health Foundation.
Throughout 2024. HPCANYS and the project team engaged hundreds of people across New York to gather feedback on the benefit’s design through a statewide symposium, virtual feedback sessions, electronic surveys, key informant and provider interviews, and at the HPCANYS conference. Providers, pediatric specialists, long-term care administrators, hospice providers, health plan leaders, health system administrators, caregiving administrators, and leaders from community-based organizations provided their feedback, along with people with lived experience of a serious illness and their caregivers.
In addition, HPCANYS and C-TAC worked with the New York Department of Health and TFA Analytics to perform data analysis defining the population and number of Medicaid recipients with a serious illness in the state, understanding their current experience of care, and comparing the need for palliative care across the population with current provider capacity to deliver palliative care in each community. The analysis segmented the availability of palliative care providers to deliver community palliative care services to adults, older adults, and children.
In addition to the robust feedback on the design of the benefit itself, the community provided input on recommendations related to messaging about palliative care, needs for provider training and readiness to deliver a community palliative care benefit to Medicaid recipients, and the needs of caregivers in the state. These recommendations have been presented to a statewide advisory council on palliative care services and will be presented to the New York Department of Health and leadership within its newly formed Center for Hospice and Palliative Care, a division within the Office for the Aging and Long-Term Care. Recommendations related to the needs of the community to better care for children, adults, and older adults with serious illness and their caregivers will also be provided to funders and healthcare associations within New York to support planning efforts to increase access to palliative care services should a benefit be implemented.
HPCANYS and C-TAC intend to continue advocating for the development of this new benefit and to communicate the needs of community members and providers related to messaging, caregiving, and provider education and readiness throughout 2025.
