What Policymakers Should Know About How Dually Eligible Individuals Experience Care

Tuesday, September 21, 2021

People who receive benefits from both Medicare and Medicaid, called “dually eligible individuals,” have some of the highest needs among the publicly insured population. For instance, they are more likely than other Medicare beneficiaries to experience multiple chronic conditions, functional limitations or disabilities, or a serious mental illness or substance use disorder. In addition, dually eligible individuals often face unmet social needs, such as food insecurity and social isolation, that are connected to their health concerns. The COVID-19 pandemic has only intensified these challenges, as the health and social services that dually eligible individuals rely on became harder to access.

Medicare and Medicaid were designed to address different populations and are both administered and regulated differently, meaning that dually eligible individuals can experience fragmented care. At the same time, this dual system means that states, the Centers for Medicare & Medicaid Services (CMS), and health plans can experience high costs. To address these issues, CMS began various programs to integrate dually eligible individuals’ care and benefits in the mid-1990s. Such programs include Dual Eligible Special Needs Plans, a type of Medicare Advantage plan that provides combined benefits; Financial Alignment Initiative; Program of All-Inclusive Care for the Elderly; and Primary Care Case Management and Limited-benefit Plans.

Despite these efforts, integrated care models are not available in all states. They also tend to have low enrollment. As of 2020, only about 10% of qualified dually eligible individuals were enrolled in an integrated health plan. Recent research helps explain why: Integrated plans often have limited provider networks, information about a plan’s benefits is not easy to understand, and dually eligible individuals don’t always have a trusted, knowledgeable person to ask questions about their benefits. In recent years, various organizations, such as the Medicaid and CHIP Payment and Access Commission and Dual Eligible Coalition, have called for improving care integration for dually eligible individuals.

While there are some exceptions, much of the research and advocacy related to improving care integration for dually eligible individuals has focused on policy, plan design, and operations. This means that the lived experiences of dually eligible individuals, their caregivers, and the advocates supporting them are missing from the conversation. Researchers at IMPAQ, with support from Arnold Ventures, aimed to fill this gap by conducting a study using principles of human-centered design. By centering the needs, well-being, and experiences of dually eligible individuals, we were able to identify areas where future policy- and plan-level solutions could meaningfully improve care integration. In this blog post, we share what we’ve learned and provide decisionmakers with information to continue to improve the integrated care experience.

Our study focused on the first two phases—Empathize and Define—of the typical five-phase human centered design process. Our ultimate goal was to identify areas where policy changes could have the greatest impact.

Phase one: We conducted empathy interviews with 48 dually eligible individuals, about half of whom were enrolled in integrated care plans. We asked open-ended questions to understand their specific care experiences and uncover unacknowledged needs. This style of questioning allows interviewees to discuss what they perceive as important, and we used prompts and follow-up questions to focus on the impact of lived experiences on interviewees’ day-to-day lives and well-being.

Phase two: In the second phase, we systematically analyzed data from the empathy interviews to define the circumstances under which integrated care does (or does not) occur from the perspectives of dually eligible individuals. 

Lessons from the Lived Experience of Dually Eligible Individuals

The dually eligible individuals we interviewed shared some positive experiences with their care, such as having good relationships with providers, the ease of mail-order prescriptions, and the convenience of telehealth. However, most described problems accessing and coordinating the care they need. Although nearly half of the dually eligible individuals in our sample are enrolled in integrated care plans, they experienced many of the same challenges as those who were not. Some of these challenges include:

  • Understanding, navigating, and coordinating their benefits. To choose and enroll in a health plan, dually eligible individuals must discern what care options are available and how to access them. Individuals often spent a lot of time calling plans, researching providers and benefits, and waiting to get information.
  • Limited access to a network of high-quality providers. Finding and maintaining relationships with in-network providers who offered positive experiences was difficult for dually eligible individuals in our study. They spent considerable time searching for high-quality providers, determining whether they accepted their health plan and whether they were accepting new patients.
  • Difficulty getting prescriptions filled and covered by insurance. Individuals in our study described providers who were unwilling to prescribe medications or suggest alternative treatment options; administrative hurdles, such as prior authorization; and miscommunications between providers that forced individuals to go without needed medication for weeks or months at a time.
  • Inconvenient or unreliable transportation. Without transportation, certain services are effectively out of network for some dually eligible individuals. Health-plan-provided transportation services, such as shared vans and taxi service, were not available to everyone in our study, and those who used such services gave them mixed reviews. The most common complaints were scheduling difficulties and delays in the arrival of transportation.

Moving Toward a More Human-Centered Vision of Care Integration

Our interviews with dually eligible individuals showed that truly integrated care is more than a list of benefits. They see integrated care as less of a continuum and more of an ecosystem that embraces their personal circumstances, such as having family and friends who provide informal care to fill gaps in their benefits; help with basic tasks like shopping or housework; and/or child care so they can attend appointments.

So how can policymakers and plan administrators design integrated systems that account for these factors? A first step is to commit to involving dually eligible individuals in the process. Dually eligible individuals can help policymakers and plans understand critical gaps and pain points of navigating their benefits, as well as adjacent areas that need attention, such as social and economic factors. Based on the feedback from individuals in our study, we provide these considerations for policymakers and plans:

A Path Forward

Plan design alone is not likely to accomplish improvements to care integration for dually eligible individuals; hands-on approaches to identifying their needs and getting them and their families connected to care and services are necessary. Although some services dually eligible individuals desire may not be financed by Medicare or Medicaid, policymakers and plans can identify ways to coordinate with other types of service providers and create policies that facilitate seamless hand-offs. Any development of policy solutions should meaningfully involve dually eligible individuals to ensure that they accurately address their most pressing issues.

To learn more about this study, including insights from our interviews with dually eligible beneficiaries, access our report.



Melissa Hafner, MPP; Brandy Farrar, MS, PhD; Karin Johnson, PhD; Sarah Pedersen, MPP; Katherine Allen, MPH; Talia Fish, MPA; Faizah Pirzada, BA.