C-TAC, the Hospice and Palliative Care Association of New York State (HPCANYS), C-TAC Innovations, and TF & Associates (TFA) are partnering to develop a comprehensive set of recommendations to expand access to palliative care and caregiver services in New York State through state benefit design and is funded through a grant from The Ralph C Wilson, Jr. Foundation.
This initiative fits into and is closely aligned with the New York State’s Master Plan for Aging (MPA) and with the activities of the National Academy for State Health Policy (NASHP) Serious Illness Institute. The MPA is being jointly coordinated by the New York State Department of Health (NYSDOH) and New York State Office for the Aging (NYSOFA). It is designed to ensure that “older adults and individuals of all ages can live healthy, fulfilling lives while aging with dignity and independence”.
The state recognizes that there is inconsistent availability and access to the provision of quality palliative care services in New York. Moreover, palliative care services that are available lack oversight and appropriate funding. Specifically, there is no reimbursement under Medicaid (and limited Medicare reimbursement) for adult palliative care, and a lack of NYSDOH oversight for payor or private vendor palliative care providers. Ultimately, the absence of standardization in palliative care services leads to patient confusion, fragmented care, and poor outcomes.
The overarching goal of this joint initiative between HPCANYS, C-TAC, C-TAC Innovations, and TFA – Expanding Access to Palliative Care Services and Supports for Adults, Children and Their Caregivers in New York State – is to improve access to high-quality care for people with serious illness in NY while also improving health equity for the medically underserved, low income, and minority populations. The expected impacts of this initiative include:
- Expanded access to palliative care services through a sustainable Medicaid payment model for interdisciplinary palliative care services in the community
- Standards and requirements for palliative care services in New York, including reporting standards
- Alignment between Master Plan on Aging and Palliative Care Benefit Expansion
- Greater community awareness about palliative care
- Ensuring caregivers have access to available services through recommendations to address funding and policy changes
To achieve these goals, the initiative will first evaluate existing policy barriers preventing use of available services for New Yorkers facing serious illness and their family caregivers, while identifying gaps in access and coverage to palliative care. Second, it will convene and engage a multi-sector group of stakeholders, including patients and caregivers, to develop a benefit design proposal, business case, and collect the feedback necessary to expand access to palliative care services for people with serious illness. The last step will be to develop a defined community-based palliative care benefit and seek approval from CMS to implement it through a state plan amendment, waiver amendment, or other policy means.
As a first step, at the September HPCANYS Leadership Summit, feedback from hospital and community-based hospice providers from across the state was collected related to policy barriers and gaps in access. The group discussed in depth the challenges and opportunities related to population demographics, workforce needs and bandwidth, services offered and utilized, existing infrastructure and investments, external partnerships, quality measures and reporting capabilities, and disparities and health equity. In addition, the group also articulated a vision for what an ideal palliative care benefit would look like, including the mix of services offered, team member composition, reimbursement mechanisms, and what collaboration between providers, patients, and caregivers looks like.
Building from the kickoff meeting, C-TAC, HPCANYS, C-TAC Innovations, and TFA will work closely with NYDOH and key NY stakeholder groups to form an advisory council to guide the work moving forward. The plan is to complete the benefit design process in partnership with NYSDOH by the end of 2025.
