Improving Medicare–Medicaid Integration: Priorities of Dual-Eligible Adults Under Age 65

Abstract

• Issue: Efforts to improve the integration of care delivery and financing systems for dual-eligible individuals enrolled in both Medicare and Medicaid typically do not address the unique health and social circumstances of those under age 65.
• Goal: To collect information directly from dual-eligible individuals under age 65 and their caregivers describing their particular needs and challenges to inform enrollment, access, and care management approaches.
• Methods: We held four focus groups of dual-eligible adults under age 65 and/or their caregivers in July 2024 via Zoom. Participants included individuals with physical and behavioral health conditions as well as those with intellectual and developmental disabilities.
• Key Findings: Focus group participants raised specific challenges, including: 1) fragile support networks and fear of losing parents’ assistance as they age; 2) poor coordination of medical, behavioral health, and social care; 3) scarcity of providers equipped to address their health and social needs; 4) limited access to services, equipment, and personal care support needed for employment and community integration; and 5) absence of trusted, knowledgeable, and reliable sources for navigating health plan enrollment choices, authorization rules, and provider networks.
• Conclusion: Policymakers need to recognize and address the specific needs of dually eligible individuals under age 65 as integration efforts proceed.

Introduction

Federal and state legislative and regulatory policymakers are pursuing a number of approaches for better integrating Medicare and Medicaid for Americans enrolled in both programs.¹ These initiatives include monthly opportunities for dual-eligible beneficiaries to enroll in integrated managed care plans to receive better-coordinated, less-fragmented care.² But such efforts typically do not acknowledge the heterogeneity and varied needs of dual-eligible beneficiaries, who can have an array of physical and behavioral health conditions, intellectual and developmental disabilities (IDD), and/or complex health and social needs.

More than a third (36%) of the 12.8 million individuals dually eligible for Medicare and Medicaid are under age 65 (Exhibit 1). Behavioral health conditions such as anxiety and bipolar disorders, depression, and schizophrenia and other psychotic disorders are more common in the under-65 population, and they require intensive medical and nonmedical assistance to maintain independent living and avoid institutionalization.³ Unsurprisingly, this group accounts for a disproportionate share of health care spending (Exhibit 2).

Nonelderly dual-eligible individuals who have chronic disabilities and low incomes are eligible for benefits under both programs (see box below). These individuals often experience fragmented and uncoordinated care because financing and care delivery may come from different programs, leading to confusion about coverage, long wait times for services, and lack of access to providers who understand their special health and social needs. This disjointed system puts them at risk for poor health outcomes and can jeopardize their ability to remain in the community.

Integrated care aims to coordinate and combine Medicare and Medicaid services and payments; align administrative procedures such as beneficiary materials, appeals, and grievances; jointly oversee the programs; and improve access for dual-eligible individuals. While federal and state policymakers strive to bring down costs, reduce fragmented care delivery, and increase enrollment in Medicare managed care plans through Medicare and Medicaid integration testing,⁴ legislation,⁵ and regulation,⁶ they also should be seeking to address the unique health and social challenges facing dual-eligible beneficiaries under age 65.⁷ These individuals often struggle with access to specialists like behavioral health providers, worry about aging parent caregivers, and meeting social needs like utility and rent payments — all essential for employment and community living.

To explore people’s needs and experiences in navigating care, we conducted four focus groups via Zoom in July 2024. Participants included dual-eligible individuals under age 65 who have physical, behavioral health, and IDD, as well as their caregivers. (See “How We Conducted This Study” for additional details.)

Focus Group Findings

Dual-eligible individuals under age 65 are diverse, with complex and unique health and social needs. Participants reported wide-ranging health concerns, including spinal cord injuries, cerebral palsy, rare genetic conditions, ESRD, ALS, and severe mental health conditions (such as schizophrenia and bipolar disorder). Many participants described stressful living situations due to inconsistent and unaffordable help at home. These challenges are often compounded by multiple co-occurring medical, behavioral health, and social issues, including trauma, PTSD, and homelessness. Participants need assistance with social determinants of health such as food, utility bills, transportation, and housing costs to augment their low incomes.

Navigating benefits posed additional challenges. Many struggled with Medicaid and Medicare eligibility requirements, and cumbersome Medicaid renewal procedures sometimes resulted in coverage gaps. Not all knew they could receive extra help with Medicare premiums, cost-sharing, and Part D premium costs through the low-income subsidy program.

Individuals value independence, community integration, and being treated by health providers with dignity and respect. These dual-eligible adults lead diverse lives: Many have worked in the past, while others are currently working, parenting young children, or pursuing education. Some want to return to work but can’t because of their health and social needs. Participants expressed frustration when daily needs were not met due to restrictions on personal care aide hours, and they attributed low provider payment as a barrier to consistent, quality assistance. For many, aging parents are a crucial source of assistance, leaving them concerned about a future without their caregiving support. Many feared that if they could not get access to community services and supports they would end up in a nursing home.

Access barriers and poor treatment routinely complicate care. Focus group participants reported experiencing difficulty finding providers who accepted Medicare and Medicaid, particularly dentists, behavioral health providers, and gynecologists, and they often faced wait times of up to seven months for services. A number of individuals also encountered inaccessible provider offices and medical equipment not adaptable for people with disabilities. Even health plan enrollment did not resolve these provider access issues. Participants frequently reported poor treatment experiences based on disability, race, weight, type of insurance, and income, which were deeply upsetting and led some to forgo needed care. They described paperwork and logistical challenges in obtaining and repairing wheelchairs, other necessary medical equipment, and transportation. While telehealth was viewed as helpful, particularly for behavioral health and specialist care, participants emphasized it was inadequate as a replacement for in-person care.

Choosing a health plan with a network of providers knowledgeable in addressing their conditions and concerns is a priority, yet health plan enrollment decisions may be influenced by marketing. Participants expressed hesitation to disrupt longstanding relationships, particularly with specialists (including out-of-state providers) when considering health plan enrollment. Those with IDD were particularly opposed to mandatory enrollment in a Medicare Advantage plan, which may have limited networks of providers that can address their often complex and co-occurring health conditions. Despite vision, dental, and hearing benefits, many remained reluctant, citing perceived poor quality and lack of provider choice. Participants also voiced concerns about prior authorization requirements in light of their complex and often urgent health needs.

Some of the focus group participants said they were enticed to join a health plan offering grocery and utility bill assistance without investigating whether the plan’s network included their providers. And several reported that these health plans reduced benefit amounts in subsequent years, though others were satisfied with their plan enrollment.

Navigating Medicare and Medicaid coverage choices is difficult. Participants were confused about program rules and struggled to access benefit and coverage information. Many reported they do not understand program materials, lack knowledgeable and responsive case managers, and find provider directories unreliable as they often list providers who do not accept Medicare or Medicaid. While some succeeded in appealing denied benefits, all agreed the process is complex. A significant concern raised was the turnover of staff who coordinate care, which forced patients to constantly rebuild relationships and restart the care planning process. Though focus group participants recognized the need for advocacy, many found themselves managing their own care needs despite their complex circumstances.

Policy Recommendations

Our study’s findings suggest a number of policy changes that would improve the care and well-being of dual-eligible beneficiaries under age 65:

Incorporate the experience and priorities of dual-eligible individuals under age 65 in integrated program design and implementation. Active engagement of dual-eligible individuals requires commitment, resources, and time but provides valuable insights for state and federal officials, plans, and providers regarding program design and implementation. Their priorities include access to health services and supports to maintain independence and community involvement. Additional data and analysis are needed to understand the unique health and social needs of individuals under age 65, such as employment opportunities and support for aging parent caregivers.

Address provider network and benefit issues. Focus group participants said that individuals under age 65 face challenges in establishing and maintaining provider relationships — challenges that are amplified by provider shortages, they noted, especially in behavioral health and rural areas. As integration efforts proceed, it will be important to assess whether enrollment in Medicare Advantage plans (including Dual Eligible Special Needs Plans) improves access to specialist, behavioral, and dental health providers, addresses social drivers of health like food and transportation, and expedites access to vital equipment and services like wheelchairs that are essential for health and community life. While people value the supplemental benefits these plans offer as well as the care coordination integrated plans provide, they also value the freedom afforded by original Medicare to seek providers and specialists who can address complex and unique health needs.

Improve informed choice for better care management and coordination. Participants believe that better integration between Medicare and Medicaid could help to reduce confusion and bureaucratic obstacles while improving benefit coordination. However, they also seek trusted sources of help to understand their choices, navigate health plan coverage, and access benefits. Rather than relying solely on sales-focused brokers, advocacy organizations and aging and disability resource centers should take a leading role in providing unbiased information and assistance. Consistent with lessons learned from dual-eligible Financial Alignment Initiative demonstrations,⁸ knowledgeable benefit, and care coordination can bridge health and social needs, ultimately improving care delivery and support to individuals with disabilities.