There are over 12.8 million people who access their health care through a mix of Medicare and Medicaid funding. These individuals include a diverse group of people from across the disability community. Ensuring adequate health coverage and services for this population of “dually-eligible” individuals is a large part of our ongoing policy work. In this blog series, we are diving deeper into how we’re addressing emerging developments.
A Community Story on Care Integration – My son is dually-eligible. After the two-year required waiting period after receiving SSDI, he was informed by the Social Security Administration that he was Medicare eligible. He had already been receiving Medicaid Home and Community-Based Services (HCBS) through the Developmental Disabilities Administration (DDA). We called his Medicaid HCBS/DDA provider about coordinating his care through Medicare and Medicaid. Their support staff didn’t know anything about how to guide us. They already struggle to coordinate our son’s HCBS personal supports with his Medicaid health plan. The DDA provider does have a nurse assigned to each client, but my wife primarily manages his care. We’ve called DDA and the Medicaid health plan for more information about how to work with Medicare to fund his services. Both DDA and the health plan referred us to the state Medicaid agency. After several calls to our state Medicaid, we learned that Maryland Medicaid has a work group working on integration. However, no public information is currently available. After later calling the Medicare help line, they also referred us to the state Medicaid agency. After exhausting all options for support through both programs, my son’s health and personal supports are coordinated by my wife. My son has a Medicaid card and a Medicare card, and he relies on us to make sure he has continuous care. How many dually eligible adults with disabilities have moms with the knowledge, ability, time, and resources to be the individual’s care across delivery systems coordinator? We hope these programs can fully integrate to make sure that he can continue living independently.
Understanding Dual-Eligibility
A large subset of the disability community receives their health coverage through a combination of Medicaid and Medicare funding. These individuals have primary coverage through Medicare, with supplemental coverage provided by their state Medicaid program. Medicare typically covers medical care for this population, with Medicaid providing funding for long-term care and cost-sharing/ premium assistance. People covered by both programs are primarily low-income, though they represent a diverse swath of the American public. Over 87% of dual-eligible individuals had annual incomes less than $20,000. People over 65 tend to include those who have exhausted their finances paying for health care costs and long-term care. Those under 65 include those with and without work histories. Some individuals live with intellectual and developmental disabilities that have impacted their ability to work. Other individuals left the work force due to mental or physical disabilities they acquired later in life. About half of the people served as dual-eligibles are people of color.
Dual-eligible individuals can be considered full or partial-benefit recipients. Full beneficiaries include anyone receiving Supplemental Security Income or LTSS, and those with incomes below the poverty line. Approximately 73% of dual-eligible individuals are full beneficiaries. These full beneficiaries received services from Medicaid that Medicare doesn’t offer alone, including long-term care, dental, and vision benefits. Partial beneficiaries do not receive full Medicaid benefits, but the program supports with paying their Medicare premiums.
People who are dually-eligible for Medicare and Medicaid can choose to sign up for the traditional fee-for-service Medicare program, but many increasingly elect to sign up for Medicare Advantage plans. Depending on the state, dual-eligibles over 55 years old can also sign up for a special program called PACE, which offers wrap-around care for older Americans.
Care needs for this group tend to be higher than for the general Medicare or Medicaid populations alone. 26% of beneficiaries have five or more chronic conditions they’re managing. Enrollees include a disproportionate number of people with mental health conditions and Alzheimers/ dementia. This group is also more likely to include people who need support with daily living activities. Over 13% of the population served are living in long-term care nursing homes or institutional settings. The higher cost of care for this population overall accounts for the higher cost of care related to institutional living costs, which Medicaid is obligated to pay. Given the diversity of this population and their needs, bipartisan leaders in Congress have called for reforms to better coordinate care and services for this population.
The Future of Medicare and Medicaid
Proposed cuts to Medicaid would immediately affect the affordability of care for millions of dual-eligible individuals. Medicaid will typically cover the cost of Medicare premiums, which are $185 per month for 2025. For a person living below the federal poverty line, this can consume a significant portion of a person’s income. Medicaid is also responsible for supporting with supplemental “wraparound” services (LTSS) not traditionally covered by Medicare. These can include home care, family caregiver funding, dental, and assisted living support. Without home and community-based services (HCBS), most people receiving Medicare would exhaust their savings to maintain these supports.
Increasingly, people enrolled in Medicare are signing up for Medicare Advantage. The simultaneous growth of private Medicare Advantage (MA) plans raises other challenges for this population. Over 54% of Medicare recipients are on MA plans as of 2024. These plans often cover services that traditional Medicare excludes, like dental, vision, and hearing. Enrollees can experience challenges accessing care under Advantage plans, which have smaller provider networks and may require additional steps to accessing care, including prior authorization. Advantage plans are known for overbilling federal funds and providing fewer services to beneficiaries overall. These managed care plans can result in less coverage for enrollees, often excluding certain services like behavioral healthcare.
Dual eligible individuals can enroll in a special needs plan (SNP) run through Medicare Advantage. These plans are run by private insurance companies on behalf of the Centers for Medicare and Medicaid Services (CMS). Some states automatically enroll individuals into dual-eligible SNPs (D-SNPs) once they become Medicare eligible. D-SNPs are the most common type of SNP, and account for nearly half of MA plans. D-SNPs offer many supplemental benefits the way that MA plans do, including dental and non-medical transportation. However, they often don’t adequately advertise their offerings, with uptake and usage of supplemental benefits being limited.
The Program of All-Inclusive Care for the Elderly (PACE) Programs were created to provide Medicare coverage to primarily dual-eligibles. This program offers home-based care for individuals over 55 years old who require skilled nursing care. PACE serves people with disabilities with higher care needs than the dual eligibles population overall. Compared to MA plans, PACE participants demonstrate lower levels of hospitalization, emergency room visits, or institutionalization.
Expanding Care for Dual Eligibles
Coordination between Medicare and Medicaid programs has been a longstanding challenge for people receiving both benefits. CMS launched a Financial Alignment Initiative in 2011 to better coordinate care and funds for dual-eligible individuals. This work involved testing out pilot initiatives in a sampling of states to determine best practices for integrating Medicare and Medicaid. As of last year, the University of Pennsylvania Leonard Davis Institute of Health Economics outlined six key recommendations for improving benefits administration to dual-eligible individuals. These recommendations include simplifying the Medicaid enrollment process and integrating coverage options for enrollees. Ideally, an enrollee would only have to complete one enrollment process to receive both benefits. In 2024, federal legislation was proposed through the Duals Act, which would call on state Medicaid programs to offer an integrated health program for dual-eligible individuals.
As advocates work to improve coverage options for this population, certain standards of care must be ensured, reflecting guiding principles for integration. One of the biggest concerns for dual eligibles is choice in plan selection. Dual eligibles should be able to enroll in original Medicare, without automatic enrollment into Medicare Advantage plans. The enrollment process itself must retain the option for enrollees to adjust their plan selection at a later date, rather than being locked-in to a plan. There is also a need for unbiased, accessible, third-party assisters who can guide enrollees through the plan selection process. Especially for people with disabilities, having affirming providers and services in-network is essential for receiving adequate care. Enrollees should be able to select the providers that most suit their preferences and demonstrate an inclusive approach to care. As people transition into integrated plans, there must also be mechanisms in place to smooth disruptions to care that might happen during that period. There must also be protections to keep people from experiencing disenrollment from Medicaid due to administrative reasons, with expanded eligibility for enrollees. Given the disproportionate reliance on nursing home care under Medicaid, integrated plans will ideally help to transition funding towards community settings that support independent living. Across the board, care costs to enrollees should never exceed what stand-alone plans charge for comparable services. Recent focus groups from the Commonwealth Fund identify that many beneficiaries face concerns with social needs like housing costs, homelessness, PTSD, and aging caregivers, while managing their health needs. Dual eligible individuals need to set the priorities for how their coverage needs are met and addressed to ensure comprehensive, inclusive care.
Our last post in this series focused on the importance of defending the Affordable Care Act. Follow our Policy Updates and the Disability & Public Health Newsletter to stay on top of our current advocacy on these issues. We are working with the Disability and Aging Collaborative (DAC), the Justice in Aging Duals Integration Working Group, National PACE Association, MACPAC and MedPAC to enhance care and coverage for dual eligibles.
Further Reading
- Justice in Aging – Dual Eligibles
- American Council on Aging – Dual Eligibility for Medicare and Medicaid: Requirements & Benefits for Long-Term Care
- Kaiser Family Foundation – Issue Briefs