More than 12 million Americans are living with a serious illness, many of whom face challenges accessing support to manage their pain and other symptoms related to their condition or their associated treatment. Those diagnosed with a serious illness eligible for Medicaid due to financial insecurity are most vulnerable to gaps in accessing needed care during this time.
Coalitions, policy makers, and other community leaders are advancing initiatives at the state and local levels to improve the care experience for people with serious illness. By accelerating change locally, C-TAC members can innovate to deliver new models and benefits that can scale nationally. One such initiative relates to community-based palliative care services, delivered by an interdisciplinary team of specialists, supporting a person with a serious illness and their caregiver through advance care planning, care coordination, and pain and symptom management. Currently, nearly 50% of states in the country have enacted legislation to require palliative care services as a covered benefit for beneficiaries eligible for Medicaid, including dual eligibles – those over 65 also qualifying for Medicaid.
In 2019, Hawai’i Med-QUEST Division (MQD), the state’s Medicaid agency, set out to develop a defined set of coordinated, interdisciplinary palliative care services that would fill the gap for people in Hawai’i living with a serious illness seeking care for their pain and other symptoms outside of the hospital, while still receiving treatment for their condition. Funded by the Stupski Foundation, MQD partnered with TF & Associates to develop and file a comprehensive palliative care benefit for all Medicaid beneficiaries – children and adults – living in Hawai’i facing a serious illness. More than 800 stakeholders from across the state and nationally contributed to the benefit design process, working to ensure that the benefit developed would reflect the needs of the population, consider capacity and readiness of providers delivering care, and create a sustainable payment model that supports care delivery, while ensuring that the services achieve anticipated cost and quality outcomes.
“What we are trying to do is forge the pathway with CMS to have home-based palliative care defined as a regular Medicaid benefit just like we would for any other Medicaid service” said Judy Mohr Peterson, Med-QUEST Administrator, Hawaii Department of Human Services on a NASHP webinar highlighting recent state policies that expand access to palliative care.
While Hawai’i is not the first state in the country to require access to a community-based palliative care services benefit, it is the first state to elect to submit an application to the Centers for Medicaid and CHIP Services (CMCS) to include palliative care services as a benefit in their State Plan Amendment. A State Plan Amendment is one mechanism by which a state Medicaid agency receives approval by CMS to administer a new benefit to their beneficiaries. The Hawaii Medicaid program is currently negotiating the State Plan Amendment with CMS and waiting for a final determination.
Why is this significant?
- Sets precedence. If CMS approves the benefit through a State Plan Amendment, Hawai’i stands to set a precedent for other states and payors seeking to cover palliative care services.
- Defines palliative care as a Preventive Service. Hawai’i is seeking to cover palliative care services as a preventive service, which is defined as services that prevent disease, disability, and other health conditions or their progression; prolong life; and promote physical and mental health and efficiency.
Said Mohr Peterson, “In talking with CMS, they agreed, and we all agreed, that preventive services can be defined quite broadly including preventing worst outcomes, and palliative care is definitely designed to help individuals and their families lead a better quality of life and approach their care so they have more coordination and collaboration so that they can help manage the serious illness now facing them and their families.”
- Defines a payment methodology. Hawai’i’s benefit would standardize the payment methodology for palliative care services, using a bundled payment rate that covers services delivered by an interdisciplinary team. This payment methodology would be able to be used by other states to reimburse for these services.
- Creates standards for quality and reporting. If approved, Hawai’i will monitor the performance and quality of services delivered under the benefit. This will include the monitoring of which providers are qualified to deliver palliative care services under the benefit. This model of monitoring and reporting at the state level can be scaled to other states, helping to standardize the delivery of palliative care services across the country.
This path to gaining approval for a palliative care benefit is one that requires dynamic leadership, creative problem solving, and expertise in policy design. Hawai’i Medicaid Director Dr. Judy Mohr Peterson’s commitment to this work has been able to push the initiative forward, despite competing priorities such as Medicaid redetermination, responses to the COVID-19 pandemic, and other public health emergencies.
“We wanted to forge the pathway so that states did not have to ask for some kind of special waiver….we wanted to forge the path so that this became a regular Medicaid benefit that any state could put in place without needing to seek a waiver, it could become a state plan benefit” said Mohr Peterson. “It’s proven to be much more challenging than what we thought, but we feel like we’re really, very close to finally getting the approval and finally getting through everything to be able to get this finally approved. It’s been a long, long journey, much harder than what we thought, but that was our ultimate goal.”
This article was corrected on November 1, 2023 with updated information since the first release on October 26, 2023.
