On July 14, C-TAC met with Democratic staff of the Senate Finance Committee to share the coalition’s recommendations for the long-term care reform initiative launched by Ranking Member Ron Wyden (D-OR). The briefing, led by C-TAC Senior Policy Advisor Brian Lindberg, Senior Strategic Advisor Torrie Fields, and Healthsperien Policy Analyst Quin Lyons, represented an important opportunity to ensure that the needs of people living with serious illness and those who care for them remain central to the Committee’s evolving long-term care agenda.
The Committee’s Initiative
Senator Wyden has made long-term care reform a signature priority, organizing the initiative around three core goals: improving the affordability and accessibility of home-based care, enhancing the quality of care in nursing homes, and strengthening the long-term care workforce and care delivery models.
As part of this effort, Democratic Committee staff have been conducting stakeholder briefings and preparing a Request for Information (RFI) to solicit detailed policy recommendations from experts and organizations across the field. C-TAC plans to submit a comprehensive response and continue engaging with Committee staff as legislative proposals are developed.
C-TAC’s Message: Serious Illness Must Be Central to Long-Term Care Reform
C-TAC’s central message was clear: the nation’s long-term care system too often fails people with serious illness during the most critical transitions—from hospital to home, from curative treatment to supportive care, and from living with illness to the end of life.
The more than 12 million Americans living with serious illness are among the highest users of Medicare and Medicaid services and are disproportionately affected by fragmented care and policies that fail to reflect their goals and preferences. Improving these transitions through better payment policies, stronger care coordination, and earlier access to palliative and hospice care represents one of the highest-value investments Congress can make.
The presentation framed each of the Committee’s three priorities through the lens of serious illness:
- Home- and community-based care: C-TAC recommended expanding Medicaid home- and community-based services (HCBS) authority to explicitly include palliative care, creating Medicaid pathways that enable community-based organizations to deliver palliative care alongside aging and disability networks, and eliminating Medicare cost-sharing for advance care planning through the Improving Access to Advance Care Planning Act (S. 2865).
- Nursing home quality: C-TAC highlighted opportunities to strengthen supportive cancer care by refining the Enhancing Oncology Model to increase access to supportive services and emphasized the need to formally identify and engage family caregivers within Medicare and Medicaid care coordination models.
- Workforce and care models: C-TAC urged the Committee to protect and expand interdisciplinary CMMI models—including GUIDE, ACO REACH, and Kidney Care Choices—while incorporating patient-centered outcome measures into model evaluations and recognizing the essential role of social workers within the serious illness workforce.
Six Priority Recommendations
C-TAC concluded the briefing with six policy priorities:
- Recognize the needs of people with serious illness and their caregivers as a foundation for broader long-term care reform.
- Ensure care preferences are understood, documented, and honored by advancing the Improving Access to Advance Care Planning Act.
- Continue reforms to Medicare hospice eligibility, including revisiting the six-month prognosis requirement, allowing concurrent care, closing the pediatric palliative care coverage gap, and strengthening program integrity.
- Expand Medicaid HCBS authority to include palliative care and community-based organization delivery models.
- Require the identification and engagement of family caregivers in care coordination models and support the Credit for Caring Act (S. 925/H.R. 2036).
- Protect and expand interdisciplinary CMMI serious illness care models while embedding quality of life, symptom burden, and caregiver outcomes into program evaluation.
Serving as a Technical Resource
In addition to its policy recommendations, C-TAC offered to serve as an ongoing technical resource for the Committee as it develops long-term care proposals. The coalition highlighted its expertise in clinical and patient-centered outcomes research; perspectives from members across the care continuum; the Supportive Cancer Care Coalition’s work on oncology and palliative care payment models; and the Caregiving Work Group’s recommendations for better integrating family caregivers into care delivery.
Committee staff engaged in a thoughtful discussion throughout the briefing, reinforcing that the serious illness perspective provides an important and distinct contribution to the Committee’s long-term care reform efforts.
Looking Ahead
The next major milestone will be the release of the Senate Finance Committee Democrats’ Request for Information. C-TAC will develop a comprehensive response that builds on this briefing and will keep members informed of opportunities to contribute evidence, policy recommendations, and real-world experiences.
Members with questions or perspectives to share are encouraged to contact Brian W. Lindberg at blindberg@healthsperien.com
