Engaging People with Disabilities in Health Care: Lessons from the Massachusetts One Care Program

By Jennie Chavis, Center for Health Care Strategies


Payers and providers across the country are looking for ways to deliver better care to people with disabilities, including those who are dually eligible for Medicare and Medicaid. A study, created and led by people with disabilities, examined member engagement and outcomes in the Massachusetts One Care Program, which provides comprehensive, integrated, coordinated care for dually eligible individuals under 65. An important component of the One Care program is that managed care organizations (MCOs) are required to engage members to play an active role in the care team and development of individualized, patient-centered care plans. By including members in care planning and determining team design, focusing on their needs and desires, and enabling access to long-term services and supports (LTSS), members of One Care perceived improved control over their health decisions, quality of life, and health care, and hope for their future. These findings can help inform health plans and systems that are considering engaging members in care planning, quality measure development, and program design.

The Playbook recently spoke with Dennis Heaphy, MPH, MEd, MDiv, a policy analyst and health justice advocate at the Massachusetts Disability Policy Consortium and a One Care member, to learn more about the findings of the One Care study that he co-authored. The conversation highlights the impact of engaging members with disabilities in care planning and strategies that health systems and payers can use to advance health equity through improved engagement with people with disabilities.

Q. Engaging consumers in developing individualized care plans and playing a role within the care team are important aspects of the One Care model. Can you describe what participation looks like, including from your perspective?

A. For people with disabilities, the level of need and amount of direct care for social and medical needs is tremendous. We do not think of ourselves as undertaking a medical routine every day; therefore, it is important for the care team to de-medicalize the daily routine, and for the members to be a part of their care team, leveraging their own goals and ensuring that priorities of the care team and planning process are addressing their goals. Addressing goals requires a commitment to understanding the intersection of racism, ableism, and other social determinants of health that results in health disparities.

At the start of One Care, I was diagnosed with a medical issue that required surgery and an involved care team. I wanted to have medical care provided in my home and the program bumped up my personal care hours. At my request, the care team involved my personal care attendant (PCA) and physical therapist. I was also seen regularly by a nurse and my physician assistant. My PCA was trained in IV machines and wound care and showed the nursing team how to position me properly. IV machine maintenance, wound care, and physical therapy were integrated into my daily routine at home. My physical therapist helped me get two pieces of equipment I use daily: a ceiling lift that enables me to easily be transferred between my wheelchair and my bed, and a power wheelchair that enables me to quickly and easily move from a seated to a standing position. Both are essential to my health, wellness, and independent living goals.

I am grateful that I had a care team whom I trusted. This team also included my autoimmune specialist, an out-of-network provider who I was able to maintain a working relationship with through an ongoing single case agreement. Controlling my autoimmune condition is a goal of mine, and without my autoimmune specialist or our working partnership, I would not be alive.

Q. What were your biggest takeaways about the research process and the study results?

The research process was authentic. From start to finish, every aspect was led by people with disabilities, which included creating research guides, conducting interviews, analyzing data, and developing recommendations. There were a couple themes identified: member satisfaction correlated to the member (1) creating their care plan and (2) having a care team they trusted. These themes can also be seen in early surveys on One Care members by the state. The study results can also be interpreted in ways connected to hope. In the context of One Care, hope is not about cure or a miracle, but more directly connected to Maslow’s hierarchy of needs. These health services support the essentials often needed to have hope to set life goals and develop meaning and ability to engage in one’s own care. In my opinion, hope is at the center of independent living philosophy. Our research can be used as an aggregated baseline to measure member experience of hope in the future. There is a lot of sophistication and complexity in the community itself, and we need to find ways to replicate this study and integrate results into programmatic changes and policy development.

Q. How can engaging individuals with disabilities in care planning and care coordination help advance health equity?

We need to look at inequity more broadly and recognize that not only are there inequities in race, ethnicity, and language, but also in disabilities, whether physical or mental. Community-based research led by people with disabilities who experience health inequities is important for giving consumers a voice and creating a delivery system that is responsive to the needs of people of color.

For people with complex medical conditions requiring home- and community-based services, inequities in access to these services is a civil rights issue. We need to look beyond medical necessity to understand the intersection of health disparities, LTSS, and social determinants of health. MCOs and accountable care organizations (ACOs) are at the forefront of protecting and advancing the civil rights of populations with social and health needs, which can be done through investing in LTSS and home- and community-based services. I don’t think our society recognizes the innovation that is occurring in member engagement, and that member engagement can help shape new care delivery system improvements, such as developing alternative models of payments, allowing for flexible services (e.g. Recovery Learning Communities), and moving away from strict requirements and coding systems. When we talk about protecting a return on investment and reducing costs, the larger context of Olmstead and the Americans with Disabilities Act should be considered. In Massachusetts, we have an Ombudsman Program that was originally solely for One Care. What makes it unique is that it was initially run by and for people with disabilities (now it has been expanded for anyone enrolled in Medicaid ACOs and MCOs). This example represents organic growth of a shared mission between the community and policymakers of reducing disparities and increasing equity in Massachusetts.

Q. What key challenges do health care organizations face in developing or implementing programs that engage consumers in care planning?

One challenge is the lack of understanding of the most basic tenets of care planning. Too often, care planning focuses on a person’s medical needs and not their social or environmental needs. Care planning is not just about the individual and medical provider, but also about the other people that the member might want on the care team, whether that is a friend, family member, social worker, or someone else that they feel is necessary. Care planning is also about understanding the perspectives of the population. Too often, people are isolated because of economic or physical barriers.

I believe in the importance of members driving their own care, but most of the time they don’t feel a sense of agency and don’t trust providers. It is common for care planning to be completed by a person who is not a part of the care team. Members need a care navigator someone who knows the individual, understands their goals, and assists them in meeting their goals. Health care organizations need to overcome this barrier and improve trust by including members in their own care planning and coordination processes. Lastly, another challenge is the urge to bring health care programs to scale. Sometimes it is better to keep programs smaller for specific populations. Scaling can negatively impact the uniqueness and success of a program.  

Q. What advice do you have for providers and payers that are just starting to develop programs that strengthen the participation of consumers in their own care decisions?

  1. Engage the community. Elevate the community at the center of the program and find out what is important to them. When One Care started, policymakers invited people from the Recovery Learning Community to share their frustration and hopes. Policymakers should hear what the community is saying and then engage them, especially people of color. Leaders will naturally be identified from the community who want to engage in the process moving forward. It can be helpful for states to start with independent living centers, asking: why aren’t community members at independent living centers engaging? What barriers are they facing? What do we need to change about ourselves to change distrust? This will lead policymakers to make successful policy in the future related to underlying problems, such as trust.
  2. Listen to providers and the barriers they face in delivering services to complex populations. As warranted, reduce caseloads and increase the number of people hired that represent the population served by the health care organization. Ask: how do we make sure we are providing care in a meaningful way? How do we make sure we are hearing provider stories as well?
  3. Keep standards in place, such as quality measures and requirements, but also allow for provider flexibility to care for people with complex needs. If providers are solely focused on the medical factors, then they will not understand the full extent of people’s needs. There may be other measures to use, such as social needs, hope, quality of life, and spirituality. This is not about the medical system fixing social aspects, but about providers and plans understanding the contexts of people’s lives.