By Disha Williams and Vanessa Finisse, Center for Health Care Strategies; Diane Sullivan, Jimmieka Mills, and Miriam Castro, Equitable Spaces

State Medicaid programs increasingly recognize the value of engaging the perspectives of community members to help guide program and policy design efforts. Advancing effective Medicaid policymaking and promoting health equity within Medicaid requires sustained engagement with community members, rooted in trust and shared power.

Over the past year, the Center for Health Care Strategies (CHCS) and Equitable Spaces, through support from the Robert Wood Johnson Foundation, held a series of in-depth discussions with Medicaid program staff and community members with lived experience from across the country. The discussions explored how state Medicaid programs can most effectively build sustainable partnerships with community members; address operational challenges; and implement community-driven policy design, implementation, and evaluation approaches.

Following are practical insights from our conversations that can help Medicaid programs and community members strengthen their partnership to both improve care and meet upcoming proposed federal guidance.

Key Lessons from Community Members

Understanding and incorporating community member insights can strengthen Medicaid policy making and advance health equity. Yet historically, community members with lived experience have been excluded from Medicaid policy decision-making processes, resulting in less effective policies and increased health disparities.

Community participants we spoke with identified the following recommendations for states seeking to engage community members with lived experience:

Listening to the room, there’s so much expertise … Understanding history, there’s so many conversations. This information needs to be shared with policymakers, so they can understand that this expertise has a lot of value.

Roger G., Nebraska

1. Support diverse representation and full participation.

By approaching this work with humanity, intention, and humility, state agencies can position themselves to build meaningful relationships with community members. It is important to understand the concept of an individual’s unique worldview and give respect to the cultures and languages represented in members’ communities. Make space for each individual to participate as their whole self and feel a true sense of safety and belonging, in part, by providing opportunities for peer support among community members.

2. Ensure clear, respectful communication and transparency.

Hire and retain multilingual and multicultural staff and consultants and use affirming, trauma-informed language free of industry jargon and bias. Clearly communicate roles and expectations for community members. Provide transparency, including around agency limitations that may shape responses to community input. Ensure materials are timely, clear, culturally appropriate, and responsive to real-time learnings. Partner with and fund local community-based organizations that reflect their communities to serve as trusted coordinators of dialogue between states and community members with a focus on shared objectives and decision-making power.

I’m sensitive to language and don’t like words like ‘self-sufficiency’ and ‘minority.’ These words have whole connotations, and if you use them, understand that there’s a legacy behind them.

T. Harrell, California

3. Offer accessible, user-friendly platforms for engagement.

Provide interpretation for meetings, resources, and tools in multiple languages, and in various open-source (i.e. not subscription-based) and accessible platforms. Provide community members with the ability to interact with and sign documents electronically to reduce barriers to participation.

Providing interpretation is very important for us. We need to understand the technical language to be able to participate more actively and share our ideas. It’s best to do so in our own language to be fully understood.

Elsa Flores, Massachusetts

4. Promote capacity building and continuous learning.

Use a variety of approaches, including access to tools and training opportunities, to support the diverse range of skills that community members need for this work. Provide ongoing networking opportunities for shared learning.

5. Provide ongoing feedback and evaluation.

Repeat key messages to ensure full clarity and understanding. Acknowledge community member contributions, share how their input helped shape programs and policies, and celebrate accomplishments. Use community-informed procedures based on humanity and connection to assess the effectiveness of engagement efforts.

Key Lessons from State Medicaid Agencies

While state Medicaid agency participants clearly recognized the value community members bring to the program and policy design processes, they also reported that translating community feedback and insights into policy can be challenging. State agency staff also grapple with fostering a culture of trust and responsiveness and developing effective, ongoing engagement strategies with community members. The impact of state legislative processes, budget constraints, and other factors also influence the feasibility of implementing community-driven ideas.

State Medicaid staff reported potential solutions to overcoming these barriers to effective community partnerships, including:

1. Ensure adequate financing and resource allocation.

Although state Medicaid agencies recognize the value of effective engagement, many programs lack a dedicated budget or full-time personnel for this purpose. To address this, states can establish a dedicated department or lead for community engagement and focus on attracting personnel from priority populations in communities served by the program. Proactively adding member engagement efforts as a line item within state Medicaid budgets and seeking supplemental resources, such as grants from local foundations focused on building community partnerships, can help states develop sustainable engagement strategies and partnerships.

Behavioral health services are not meeting the needs of people who need those services the most. Reforming our systems of care to achieve their promise begins with engaging community leaders and people with lived experience. Investing in agency leadership to develop trusting and meaningful relationships with community helps make that transformation collaboration possible.

Steve Allen, Former Director of Behavioral Health, Oregon Health Authority

2. Provide adequate compensation.

Recognizing the value of Medicaid members’ feedback and time is crucial, yet state agencies often struggle to equitably compensate community members and report that navigating internal finance guidelines and restrictions can be challenging. Staff emphasized the need to develop clear, agency-wide compensation guidelines for this work, including considerations around preferred payment methods from community members and internal procedures to process payments. Washington State’s Office of Equity developed statewide community member compensation guidelines for community members engaged in various boards, commissions, task forces, committees, and workgroups across the state, aimed at ensuring that members receive fair and appropriate compensation for their contributions and time. 

3. Support internal culture change.

In our discussions, Medicaid program staff highlighted the crucial role of leadership in demonstrating their commitment to valuing and using member feedback. Staff reported that organizational culture, such as stigma and misconceptions among some state employees about Medicaid enrollees, associating them with poverty or a lack of personal responsibility, can lead to judgment and create an empathy gap between staff and community members. Additionally, not all staff may fully appreciate or grasp the significance of the feedback that Medicaid members offer through engagement efforts. It is essential for leadership to prioritize internal cultural competency through educational initiatives for employees and by ensuring that staff members genuinely understand and reflect the communities they serve. In doing so, states can cultivate a Medicaid program culture where staff better understand the unique needs of the communities they serve, particularly groups that have historically endured trauma and structural racism. This shift in perspective, fostered by strong leadership, can help bridge the empathy gap and enhance the value of member feedback within the organization. As an example, CHCS’ Medicaid Pathways Program is a leadership development program designed to increase investment in Medicaid leaders, especially individuals with diverse identities and experiences.

I think a big barrier is internal culture. It is important for us all to be working in the same direction, so while staff may engage with the community, if there is not support from program leadership, engagement efforts can seem like empty words to community organizations and members.

Medicaid agency participant

4. Integrate community feedback into program and policies.

It is important not only to gather community feedback, but also to use that input in policy and program design and then effectively communicate how this feedback was incorporated into policy decisions. Developing transparent decision-making strategies and establishing consistent feedback loops with community members can help build trust and ensure that the community sees the impact of their contributions. By supporting a wide range of community-informed policies and clear dissemination strategies that acknowledge community contributions, Medicaid programs can begin to create a culture of community engagement and more effectively integrate feedback into their operations, resulting in more responsive and equitable health care services. A recent CHCS report, Shifting the Power Balance: Creating Health System Accountability Through Trusted Community Partnerships, outlines practical approaches to involve local community members in decision-making processes and create opportunities for greater accountability among health systems.

Looking Ahead

From our conversations, it is clear that both Medicaid agency staff and community members with lived experience recognize that effective community engagement practices can create more informed, more equitable policy. Medicaid staff and community members share many of the same concerns and align on many potential solutions, too. With the current federal momentum around community engagement, states have a historic opportunity to reassess their existing practices, and by partnering with community members, they can co-develop program and policy design for better, more equitable health outcomes.

During the project, CHCS and Equitable Spaces consulted with more than 30 participants, including community members and state Medicaid program staff, across 17 states. We appreciate them sharing their experience, analysis, and comments that are reflected in this blog post.

Posted: June 2024