Substantial unmet care needs, high suicide and overdose rates, and disparities among historically marginalized communities have led state policymakers across the U.S. to prioritize improved access to high quality behavioral health services.¹ In response, some states are developing multi-year plans for comprehensive behavioral health reform. In doing so, states are increasingly recognizing the value of engaging people with lived experience in policy and program design. However, as these engagement efforts are relatively new, many states need guidance on effective approaches. Engaging people with lived experience of behavioral health needs requires thoughtful and sensitive consideration, given the stigma, mistrust, and discrimination that this population often encounters.

This guide provides state policymakers with practical steps to meaningfully engage people with lived experience of behavioral health needs to advance behavioral health reforms. It explores:

• What Engagement is and What Makes it Meaningful;
• The Importance of Building Trust;
• A Framework to Guide States’ Engagement Approach; and
• Considerations for Meaningful Engagement.

The guide was developed by the Center for Health Care Strategies (CHCS) in close collaboration with a group of consultants with lived experience of behavioral health needs, as well as interviews with state officials.

What is Engagement and What Makes it Meaningful?

As used in this guide, engagement refers to including people with lived experience of behavioral health needs in the design, implementation, and evaluation of system-level efforts. This can happen with varying levels of involvement, ranging from informing to involving, collaborating, and ultimately, empowering individuals as decision-makers.

States can meaningfully engage people with lived experience of behavioral health needs in a variety of ways that are discussed throughout this guide. CHCS’ project consultants shared that meaningful engagement happens when people with lived experience are included, respected, and supported by state personnel. To facilitate meaningful engagement, it is important to focus on:

• Building trust, engaging with transparency, and actively listening to the contributions of people with lived experience;
• Acting upon the thoughts, ideas, and experiences shared by the individuals being engaged to make positive changes within the behavioral health system;
• Seeking feedback from the individuals being engaged to learn what aspects of the process are going well, where improvements could be made, and making adjustments as warranted; and,
• Building engagement capacity over time, working toward facilitating engagements where people with lived experience are partners in decision-making.

The Importance of Building Trust

Trust is the foundation of meaningful engagement and successful partnership with people with lived experience. States can maximize the value of their engagement efforts by building trust with the individuals they collaborate with. Key considerations for states when engaging people with lived experience of behavioral health needs are outlined below.

1. Understand and Overcome Mistrust

Before taking action to build trust among people with lived experience, it is important to recognize that individuals with behavioral health needs may enter engagements with a sense of mistrust in behavioral health systems.² This mistrust is a natural response that may develop over time through repeated experiences of disempowering or traumatic situations while seeking and receiving care. Most notable among these types of negative encounters are involuntary hospitalizations, which can greatly diminish a person’s sense of agency. Other harms include disrespectful provider interactions and not feeling safe to self-advocate due to fear of retaliation. To overcome this, states are encouraged to:

• Listen to and acknowledge past harms, including stigma and discrimination, that people with behavioral health needs have endured.
• Recognize that building trust takes time. Be patient and move slowly and intentionally to develop strong and productive relationships with the individuals being engaged.

2. Ensure that Trust Goes Both Ways

Trust needs to extend in both directions. In addition to people with lived experience of behavioral health needs beginning to develop a sense of trust in state partners, it is important for states to develop a sense of trust in people with lived experience. To facilitate this, states are encouraged to:

• Respect and validate the firsthand accounts of those with lived experience and recognize their perspectives as valuable expertise.
• Seek clarity from people with lived experience if not fully grasping their perspectives.

This can help drive reform efforts forward by making it more likely that actions taken are in response to identified needs.

3. Challenge Power Dynamics

State agencies have power and responsibility to make decisions on behalf of individuals with behavioral health needs that influence the services made available to them. Sometimes, however, these decisions can feel paternalistic or even harmful to people with lived experience. For example, people with lived experience may be tokenized, such as being the only person with lived experience on an advisory council. If not adequately represented, the voices of people with lived experience could be overshadowed by other stakeholders whose contributions may be given more weight by decision-makers. They may also feel pathologized for their emotions due to having behavioral health needs. To overcome this, states are encouraged to:

• Seek to prevent future harm, including being mindful of the composition of multi-stakeholder advisory councils to combat tokenism and amplify lived experience voices. This can ultimately lead to a system that better serves people with behavioral health needs.
• Approach conversations with openness and curiosity, ensuring there are adequate opportunities for the voices of people with lived experience to be heard and acted upon.

A Framework to Guide States’ Engagement Approach

Multiple engagement frameworks exist with different approaches to engage people with lived experience. While these frameworks vary, they typically present increasing levels of engagement, with corresponding increases in the influence that people with lived experience have on decision-making. Examples include Sherry Arnstein’s Ladder of Citizen Participation, the Ladder of Co-production, and the International Association for Public Participation (IAP2) Spectrum of Public Participation. In this guide, we use the IAP2 Spectrum of Public Participation as an organizing framework for engaging people in behavioral health initiatives due to its focus on empowerment at the highest level of engagement. This is particularly salient in the behavioral health context because of the ways individuals with behavioral health needs have been actively disempowered in treatment settings.

Before selecting an engagement strategy, states can complete an organizational readiness assessment to evaluate how well equipped the agency and its staff are to engage community members. Agencies can use the results to develop their efforts and identify where staff training could facilitate a more effective process that centers the needs of people with lived experience. Conducting an assessment and taking steps to address readiness can help prevent potential harms to people with lived experience that might happen if states choose a more robust form of engagement without appropriate readiness.

States that have already engaged community members in behavioral health reform efforts might consider:

• Seeking feedback from individuals who have been engaged in past efforts to learn what adjustments might facilitate more meaningful engagement.
• Strengthening engagement mechanisms that have already been employed by implementing meaningful engagement practices.
• Advancing to a higher level of engagement.

The following sections describe the five engagement levels on the IAP2 Spectrum: inform, consult, involve, collaborate, and empower. Each section details when the specific engagement level is beneficial, common missteps, how to ensure engagement is meaningful, and how to advance to higher engagement levels.

1. Inform

At this engagement level, the flow of information is one directional, with states sharing information with people with lived experience to enhance their knowledge about a program, resource, or opportunity. Community members receive information but do not share feedback. Informing people with lived experience is important when states:

• Launch new behavioral health programs, benefits, or resources;
• Change existing behavioral health programs or benefits;
• Pass legislation or pursue policy changes that impact behavioral health programs and services— which can equip people with lived experience with policy knowledge that can develop their expertise; and
• Add or remove agency staff involved with existing engagement efforts, such as when a staff liaison to an advisory council leaves for a new role.

Common Missteps

• Under-communicating with people with lived experience while communicating more comprehensively with other stakeholders. This may reinf orce a stigmatizing message that individuals with behavioral health needs lack competence to understand matters that are important and relevant to their care.
• Failing to ensure accessible communication. States may, for example, use professional jargon, neglect to provide translated materials, or rely on a single communication channel instead of multiple methods such as mail, phone, email, and web. This can prevent effective communication of important information.
• Assuming that people with lived experience lack interest in certain types of information, such as legislation affecting a program they participate in.
• Neglecting to share whether or not feedback is sought. If the state is not clear about the one directional nature of the communication, people with lived experience may think there is an opportunity to share feedback, resulting in miscommunication.

How to Ensure Meaningful Engagement

Engagement that informs people with lived experience without also seeking their voices may not be considered meaningful as a standalone engagement strategy. However, informing is a necessary component of more robust engagement efforts and can be used as a precursor to deeper forms of engagement. Here are ways the inform level can be employed effectively:

• Offer training and education about policy, the behavioral health system, and current reform efforts to people with lived experience who do not already possess this knowledge. This can facilitate the development of lived expertise, and ultimately deeper forms of engagement.
• Seek feedback from a small group of people with lived experience on information before it is shared more widely to ensure that the content and messaging is appropriate and useful.
• Engage with a trusted community partner to help disseminate information.

How to Advance to the Next Engagement Level

• Recruit people with lived experience who are engaged at the inform level to participate in engagements at the consult, involve, collaborate, or empower levels.
• Consider future collaborations with community partners that disseminate information on the state’s behalf, as they may be well positioned to facilitate the recruitment process for subsequent engagement efforts.

2. Consult

At this engagement level, states seek input from people with lived experience about existing behavioral health services and current reform efforts to inform decision-making. Consulting often takes the form of public hearings or community listening sessions. There are many opportunities for states to consult people with lived experience on timely behavioral health policies, such as in developing Medicaid State Plan Amendments for mobile crisis intervention teams, as recently approved in 20 states and the District of Columbia.³

Common Missteps

• Failing to establish supports and safeguards against re-traumatization, particularly when the behavioral health topic at hand may directly relate to or impact a person’s lived experience.
• Neglecting to provide community members with updates on how the information they shared is being used by the state.
• Seeking feedback too late in the decision-making process or after decisions are made.

How to Ensure Meaningful Engagement

• Adopt a recruitment approach that engages individuals disproportionately impacted by the behavioral health issue at hand. For example, if conducting a listening session about the opioid epidemic, be sure to seek out the voices of communities of color, who face disproportionately high rates of opioid overdose deaths.⁴
• Use information shared by community members to design and implement policy change and follow up with community members to make them aware of what was done with the information they provided. Recognizing that states will not always be able to act on all the feedback provided, it is important to be transparent and share the rationale for not acting on recommendations as well.
• Train state staff on trauma-sensitive approaches to understand the potential impact of discussing behavioral health topics on people with lived experience. This can also increase the staff’s competence in effectively engaging with individuals with behavioral health needs.
• Assure individuals that their perspectives are valuable, and they are not required to share personal stories.

How to Advance to the Next Engagement Level

• Identify additional opportunities for deeper forms of engagement for people who participate in listening sessions, given the limited engagement time and lack of back-and-forth dialogue between community members and state policymakers at the consult level.
• Consider advisory group participation or other engagements at the involve, collaborate, or empower levels to enhance engagement.

3. Involve

At this engagement level, states work more closely with people with lived experience, considering and incorporating their insights to influence the direction of behavioral health reforms. Ongoing, consistent engagement continues over time, allowing for relationship and trust building between people with lived experience and state policymakers. Involving often takes the form of advisory groups, which are useful when working on initiatives or programs requiring ongoing feedback.

Common Missteps

• Failing to sufficiently consider the composition of advisory groups. This could include not ensuring that individuals from communities experiencing disparities are represented and/or not adopting a thoughtful approach when forming advisory groups that include both people with lived experience and other stakeholders.
• Neglecting to plan for how insights shared by people with lived experience will be used or not being transparent about the state’s plans for using these insights.
• Dismissing insights shared by people with lived experience, potentially reinforcing mistrust that people with lived experience may hold toward systems of power.

How to Ensure Meaningful Engagement

• Provide orientation and educational sessions around policy issues to help build confidence in individuals to engage around complex topics.
• Be mindful about the composition of advisory groups to combat tokenism.
• Determine how participation will be compensated. People with lived experience should be compensated for their time and contributions like other professionals.
• Develop a charter describing the engagement process, how information will be used, and any limitations to the engagement.
• Strongly consider the recommendations from people with lived experience. If states choose not to follow these recommendations, discuss the rationale with the individuals engaged and explain why the state is going in a different direction.

How to Advance to the Next Engagement Level

• Assess the behavioral health initiatives people with lived experience are involved in and identify additional areas to expand engagement efforts.
• Consider convening peers who are leading engagement efforts to learn from each other. Identify aspects of the engagement efforts that are going well and what challenges have come up.
• Explore how people with lived experience can influence the direction of behavioral health initiatives. This can help build capacity for the shared decision-making that happens during engagements at the collaborate level.

4. Collaborate

At this engagement level, people with lived experience are involved in all aspects of developing and evaluating a program, service, or initiative. State policymakers and people with lived experience work in partnership with one another, with states committing to shared decision-making throughout the process. This could involve formally engaging people with lived experience, potentially including staff from a community partner such as a peer-run or family-run organization. For example, the Massachusetts Department of Mental Health’s collaboration with Wildflower Alliance led to the creation of Afiya, the state’s first peer-run respite program.

The collaborate level can be effective for a variety of activities, such as: (a) strategic planning; (b) outreach to historically marginalized communities; (c) developing and implementing new programs; or (d) evaluating program performance.

Common Missteps

• Not building in enough time to effectively collaborate on the initiative, particularly in the early stages of the process. It takes time to set a strong foundation for trust building, which is critical when engaging those with behavioral health lived experience due to potential past harms they have encountered.
• Starting the collaboration after major decisions about the initiative are already made. If people with lived experience are engaged too late and are not involved in the planning process, the engagement will not be truly collaborative, and the initiative may not meet the needs of the community it is designed to serve.
• Overreliance on a community partner to collaborate or expand the scope of a community partner’s involvement without additional compensation.

How to Ensure Meaningful Engagement

• Partner with people with lived experience to create clear parameters around goals and expectations, decision-making processes, and group composition. Thoughtful preparation is needed to set the foundation for real collaboration, facilitating greater efficiency and effectiveness throughout the engagement.
• Maximize how input from people with lived experience is incorporated. State partners should be prepared to advocate on behalf of the individuals they are partnering with to overcome bureaucratic barriers that might make it difficult to engage in shared decision-making processes.

How to Advance to the Next Engagement Level

• Conduct an evaluation with individuals engaged to get feedback on which aspects of the collaboration are working well and where improvements could be made. States can then adjust their approach in response to this feedback.
• Build capacity for the empower level by encouraging staff to identify their own lived experience or that of a loved one to foster an inclusive environment. States might also consider explicitly valuing lived experience in any job postings.

5. Empower

At this engagement level, people with lived experience have decision-making authority in directing initiatives. People with lived experience are empowered to co-create solutions in a way that reflects community priorities. Empowering can take the form of hiring people with lived experience for state leadership roles. For example, there are staff at the Substance Abuse and Mental Health Administration’s (SAMHSA’s) Office of Recovery with direct lived or family experience.

SAMHSA recommends employing people with lived experience in key roles as a sustainable and meaningful outcome of engagement.⁵ It is advisable for states to work up to the empower level where people with lived experience are embedded in the system. States with more limited engagement experience may benefit from first building their capacity at the other levels. Conversely, a state with more engagement experience may be well-positioned to commit to co-creating behavioral health initiatives alongside people with lived experience.

Common Missteps

• Believing that hiring people with lived experience into state leadership roles automatically means that the engagement is meaningful. The engagement may not be meaningful if leaders with lived experience are not treated with the same respect as other leaders’ experience. Engagement would not fall under the empower level if the contributions of leaders with lived experience are not taken seriously, their voices are drowned out by others, and/or their expertise is valued less than that of other staff.
• Selectively engaging people with lived experience in leadership in select parts of the behavioral health system, such as peer support, as opposed to broad policy/program design, implementation, and evaluation.
• Assuming leaders with lived experience are substantively different from other state leaders. Many people working in state agencies touching behavioral health have their own lived or family experience but may not have disclosed those experiences due to fear of being stigmatized or discriminated against.

How to Ensure Meaningful Engagement

• Be thoughtful in creating lived experience leadership positions. Consider the following questions:
  • How much authority will this leadership role hold in relation to other positions?
  • Does the job title, compensation, and authority enable decision-making ability and credibility?
  • Is the supervisor for this role well-positioned to be supportive and allow the role to be effective? Have they been a part of past community engagement efforts?
• Ensure opportunities for leaders with lived experience to broadly influence the behavioral health system, spanning the continuum of care instead of limiting involvement to areas, such as peer supports.
• Build a supportive organizational culture that can help existing leadership and staff feel comfortable disclosing lived or family experience they may have, encouraging people to bring this lens to their work. This facilitates inclusion and prevents those hired for their lived experience from feeling “othered.”

How to Enhance this Engagement Level

• Evaluate the level of authority and decision-making given to leaders with lived experience and whether it is truly empowering. If there are multiple roles for people with lived experience within the agency, ensure coordination and collaboration across these individuals.
• Consider expanding the leadership positions filled by people with lived experience. States could also highlight lived experience as a valued in any position to foster a more inclusive culture.

Considerations for Meaningful Engagement: State Checklist

Following is a checklist of key considerations for states before, during, and after their engagements with people with lived experience of behavioral health needs. Many of these considerations are broadly applicable across the different levels of engagement, while others are more relevant to the involve, collaborate, and empower levels.

Prior to Engagement              

• Be clear about the “why.” Plan the engagement effort with a clear sense of purpose in mind. Be transparent from the beginning by communicating this purpose to the individuals being recruited to set a strong foundation for meaningful engagement. For more information on the importance of engaging people with lived experience, see Making the Case for Engaging People with Lived Experience and Expertise in State Behavioral Health Reforms.
• Consider which engagement level to use and design the engagement effort. When forming an advisory group, be mindful of its composition and any power dynamics at play. This might look like giving thought to the ratio of people with lived experience to other stakeholders to ensure that the voices of those with lived experience are adequately heard.
• Ensure diversity among the people with lived experience being recruited. Be intentional about recruiting people with a range of experiences and opinions. Consider whether the group reflects the demographics that are impacted by the behavioral health issue the state seeks to address. In addition to recruiting individuals with direct lived experience, consider including family members with lived experience.
• Make participation feasible and accessible. Discuss meeting scheduling needs during the recruitment process, offering lunch hour and after-hours options to avoid potential work conflicts. Consider whether virtual or in-person meetings are more accessible to the individuals being engaged.
• Conduct research upfront to understand the community that the state seeks to engage with. Identify potential past harms endured by the community and how they may have contributed to mistrust. This can be accomplished by:
  • Connecting with trusted community partners to offer insights and facilitate recruitment.
  • Including staff who have been involved in past community engagement efforts, either within or outside the agency. These individuals can elevate best practices and help navigate challenges.
• Develop a compensation plan. People with lived experience deserve to be compensated for their time spent engaging with states like other professionals. Compensation shows the individuals being engaged that the work they are doing is valued. For more information, see Engaging Community Members: A Guide to Equitable Compensation.
• Learn from prior community engagement efforts. If the state agency engaged people with lived experience of behavioral health needs in the past, reflect on how that process unfolded. Were there opportunities for the individuals involved to provide feedback on how the process went for them? If so, use that feedback to help build upon past efforts. If not, consider building evaluation mechanisms into the current effort.

During Engagement

• Start the engagement as early as possible. Involving people with lived experience from the beginning can help build trust and start a robust, more efficient engagement. If engagement begins when the initiative is already underway, be open about the reason, provide a comprehensive update on the work to date, and be willing to adjust the approach based on new insights gained from the individuals engaged.
• Maximize the ability of people with lived experience to contribute by communicating clearly. Provide agendas, meeting materials, and discussion questions in advance to allow the individuals engaged to start thinking about the items before the meeting. This can facilitate more productive meetings and elicit more thoughtful contributions. Avoid the use of acronyms and jargon to enable mutual understanding.
• Create psychological safety for sharing given the uniquely personal nature of the behavioral health lived experiences individuals are drawing from as part of the engagement. This might look like starting each meeting with a grounding exercise or icebreaker to allow participants to get to know each other better and build trust among the group. Being attuned to power dynamics is also critical to creating a psychologically safe environment.
• Be responsive to how potential past harm can impact engagement. These harms may lead people with lived experience to approach some topics with big emotions and could cause some discussions to diverge from the topic at hand. Be flexible and recognize that this can be a normal part of the process.
• Provide support throughout the process. Make time and space available for people with lived experience to debrief with each other. If engaging with a group for an extended period, consider having one group member be a liaison between the group and state agency staff. The liaison could serve as a bridge, easing communication between meetings and helping identify and address support needs.
• Support staff as they learn and grow. Make space for staff to debrief with each other about what is going well and what challenges are arising during the engagement process. Normalize mistakes and missteps as learning opportunities and explore how communication missteps with the individuals being engaged can be remedied.
• Seek feedback throughout the process. Encourage people with lived experience to share their reflections on how engagement is going. Provide opportunities for group reflection and more private, individual reflection to accommodate varying comfort levels. Ask questions such as:
  • Do you feel like your voice is being heard? Respected?
  • What’s going well? What can we do better?
  • What did you like most about the meeting? What did you like the least?
  • Are there topics you want to address that we haven’t discussed yet?

After Engagement

• Consider how engagement can be sustained over time. This may involve building upon prior initiatives or engaging individuals in new ways. While engaging the same voices is a common practice, it can be fruitful to seek diverse representation and welcome dissenting opinions. As community engagement becomes woven into the organizational culture, it will become a standard practice that staff are well-versed in instead of a novel approach.
• Identify ways to evaluate the impact of the engagement effort. Measuring the impact of engaging with people with lived experience can help build the case for continued and deeper engagement. States can also contribute to the growing evidence base. See Assessment Instruments for Measuring Community Engagement for more information.
• Collect data on behavioral health outcomes. Adopting a data-driven approach to measurement and evaluation is important when it comes to determining the impact of meaningful engagement on behavioral health outcomes over the long term. Including people with lived experience in measurement and evaluation efforts can also be valuable. For more information, see What We Measure Matters: Centering Lived Experience in Developing Behavioral Health Quality Measures.

1. Panchal, N., Hill, L., Artiga, S., & Hamel, L. (2024, May 23). Racial and ethnic disparities in mental health care: Findings from the KFF survey of racism, discrimination and health. KFF. https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-and-ethnic-disparities-in-mental-health-care-findings-from-the-kff-survey-of-racism-discrimination-and-health/
2. Weerasinghe, I. & Tawa, K. (2021, January 11). Core principles to reframe mental and behavioral health policy. The Center for Law and Social Policy. https://www.clasp.org/publications/report/brief/core-principles-reframe-mental-and-behavioral-health-policy/
3. Center for Medicare & Medicaid Services. (2024, September 12). CMS approves New Hampshire’s request to provide essential behavioral health services through mobile crisis intervention teams. U.S. Department of Health and Human Services. https://www.cms.gov/newsroom/press-releases/cms-approves-new-hampshires-request-provide-essential-behavioral-health-services-through-mobile
4. Panchal, N., Hill, L., Artiga, S., & Hamel, L. (2024, May 23). Racial and ethnic disparities in mental health care: Findings from the KFF survey of racism, discrimination and health. KFF. https://www.kff.org/racial-equity-and-health-policy/issue-brief/racial-and-ethnic-disparities-in-mental-health-care-findings-from-the-kff-survey-of-racism-discrimination-and-health/
5. Substance Abuse and Mental Health Services Administration (n.d.). Participation guidelines for individuals with lived experience and family. U.S. Department of Health and Human Services. Retrieved January 6, 2025 from https://www.samhsa.gov/grants/how-to-apply/forms-and-resources/guidelines-lived-experience