People with Lived Experience

YES or NO?

• Has everyone who will be working on this project identified and addressed their own unconscious bias(es)? There are many online opportunities to help highlight implicit biases and trainings to work towards awareness of bias(es). (https://implicit.harvard.edu/implicit /takeatouchtestv2.html)
• Is everyone able to release control to the wisdom of the group as a whole? Regardless of position or title, is everyone ready to accept the decisions the group makes rather than promoting or accepting only their own ideas or decisions? This requires a focus on consensus rather than individual resolutions. Of course some decisions made by a group may be limited by other factors, like grant requirements, everyone’s contributions to the conversation deserve consideration.
• Does everyone in your project group have an open mindset? Are they ready to learn from the collective thinking of the group? Sometimes this is referred to as a growth, learner’s, or beginner’s mindset. It is about coming to a discussion without any preconceived expectations, or past experiences that limit the view of a situation or possible solutions.
• Do all staff, at all levels within your organization, agree that fully supporting engagement is a priority?
• Is everyone prepared to agree to an action that they may not be 100% comfortable with? It is imperative that staff do not intentionally or unintentionally sabotage an agreed upon solution or action plan. Working in collaboration with others requires that everyone works towards the same goal.
• Does your organization recognize the need to compensate people with lived experience for their time/effort to engage/participate/contribute to your work? Is your agency leadership agreeable to providing this support? This topic will come up again later, but it is important to know that compensation shows that the organization truly values people with lived experience and should be a component of all engagement efforts. People with lived experience will want to know if and how they will be compensated.
• Does the organization have the authority to make changes? If not, make sure the people who can make changes are at the table. Or ensure the people who are engaged are informed about what changes are feasible, and what may be limitations. Be transparent about what is reasonable and what may be bigger dreams or long-term goals.

Many answers to these questions are likely more complex than a simple Yes or No. If there are items that you have not addressed, keep working towards a resolution to remove any stumbling blocks down the road. Consider if your funding source supports this work as well. When it comes to comparable compensation, learn from people with lived experience what is best for them. Sometimes it will be financial, other times it will look different. Bottom line, there should never be a cost incurred by people with lived experience who are offering their expertise. This means things like travel, parking, meals and other expenses should be covered or reimbursed by the program or organization.

Examples of challenging situations

1. The front-line staff are all in for engaging with people but management or leadership doesn’t support this idea. This will need to be addressed for the greatest success. Part of the work will be finding ways to communicate the value of working with others. This may be done by having people with lived experience help you in this process.
2. The program isn't planning to pay for the contributions of those with lived experience. There are many ways to acknowledge and support volunteers without the explicit paying for their expertise, although this still needs to be addressed over time. See chapter 12, "Support" for compensation options.
3. Everyone likes the idea of engagement, but it becomes 03 apparent that what they think engagement is having people agree with decisions already made rather than true, genuine engagement. If you can address any anticipated barriers to authentic engagement, it will be easier to help others understand why it's so important.

Linking to the MCH Leadership Competencies. Understanding organizational readiness of PWLE is a key component of the skills section of the MCH Leadership Competencies. Click the links below to access trainings that support the related sub-competencies.

• 8S1: Solicit and implement input from people with lived experience in the design and delivery of clinical or public health services, program planning, materials development, program activities, and evaluation. Also, compensate participants as appropriate for such services.
• 8S2: Provide training, mentoring, and other opportunities to people with lived experience, and community members, to lead advisory committees or task forces. Furthermore, seek training and guidance from these groups to inform program and care development.
• 8S3: Demonstrate shared decision-making among individuals, families, and professionals using a strengths-based approach to strengthen practices, programs, or policies that affect MCH populations.
• 8S6: Collaborate with organizations that are led by people with lived experience to build and deepen involvement across all MCH programs.

Implementation. Remember, the key to effective partnerships with PWLE:

• Shared decision making, involving self-advocates and/or the family, in planning and implementing activities.
• Addressing the priorities of people with lived experience using a strengths-based approach.
• Recognizing the agency of self-advocates in decision-making as they approach transition age, and across the lifespan.
• Connecting people with lived experience to needed services.
• Acknowledging that the effects of the SDOH, and broader systems of care, greatly impact individuals with special health care needs and developmental disabilities.

• Engaging Lived Experience in the Policy Making Process. Year Developed: 2022 Source:  Alliance for Children’s Rights. Presenter(s): Christine Power, Taneil Franklin, Brisia Gutierrez, Jenn Rexroad. Type: Webinar. Level: Introductory. Length: 50 minutes.
• Listen, Engage, and Reflect: How to Authentically and Respectfully Engage Individuals With Lived Experience in Storytelling Practices. Year Developed: 2022 Source: Child Welfare Capacity Building Collaborative. Presenter(s): Huyanna Clearwater, Division X Targeted Technical Assistance Project, Jeremiah Donier, Capacity Building Center for States, Alex Gaither, SaySo (Strong Able Youth Speaking Out) North Carolina, Michaela Guthrie, Capacity Building Center for States, Marcella Middleton, SaySo (Strong Able Youth Speaking Out) North Carolina, Keri Richmond, American Academy of Pediatrics and Unbelievably Resilient, Dakota Roundtree-Swain, Capacity Building Center for States. Type: Webinar. Level: Introductory. Length: 45 minutes.
• Peer Support Matters: Strategies to Incorporate and Elevate Those with Lived Experience. Year Developed: 2022. Source: Adopt US Kids. Presenter(s): Nathan Ross, and Britt Cloudsdale. Type: Webinar. Level: Introductory. Length: 70 minutes.
• The Intersection of Equity, Disparities and the Multi-Dimensions of Family and Community Engagement. Year Developed: 2019. Source: Substance Abuse and Mental Health Services Administration. Presenter(s): Alice Farrell, JD, LCSW, MSW . Type: Webinar Archive. Level: Intermediate. Length: 88 minute.
• Missing Voices: Listening to People with Lived Experience to Create a More Equitable and Effective Pandemic Response. Year Developed: 2021. Source: Evidence Exchange Network. Presenter(s): Christina Foisy, Jase Watford, Lisa Frys, and Sandi Bell. Type: Panel Discussion. Level: Introductory. Length: 57 minutes.
• Listen, Engage, and Reflect: How to Authentically and Respectfully Engage Individuals With Lived Experience in Storytelling Practices. Year Developed: 2022. Source: Child Welfare Capacity Building Collaborative. Presenter(s): Huyanna Clearwater, Jeremiah Donier, Alex Gaither, Michaela Guthrie, Marcella Middleton, Keri Richmond, and Dakota Roundtree-Swain. Type: Webinar. Level: Introductory. Length: 45 minutes.
• Shared Decision Making - Empowering Patients. Year Developed: 2019. Source: Aplastic Anemia and MDS International Foundation. Presenter(s): Susan Z. Berg. Type: Webinar. Level: Introductory. Length: 52 minutes.
• Patient-Provider Communication, Patient Empowerment, and Reducing Health Disparities. Year Developed: 2018. Source: Seattle Children's. Presenter: Monica Peek.  Type: Webinar. Level: Introductory. Length: 28 minutes.
• Creating Inclusive & Anti-Ableist Triage Policies. Year Developed: 2023. Source: Disability Rights New York. Presenter(s): Laura Guidry-Grimes, Katie Savin, and David Whalen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Authentic Engagement: People with Lived Expertise Shaping Homeless Programs and Policies. Year Developed: 2023. Source: Community Action Partnership. Presenter(s): Josh Johnson, Samantha Wood, La’Toya Cooper, and Jon DeCarmine. Type: Webinar. Level: Introductory.