People with Lived Experience

"I DON’T KNOW ANYONE FROM CULTURAL GROUPS DIFFERENT FROM MY OWN"

Yes or No?

• Does someone in your agency/program have an existing relationship with people who have lived experience from different cultures?
• Does someone in your agency/program have an existing relationship with someone who does have a relationship with people who have lived experience from different cultures that could introduce you?
• Does someone in your agency/program know how the people who have lived experience from different cultures gather or communicate within their community?
• Can you ask the community what supports they might need as a way to get to know more about them and develop relationships?

Community Connectors

When building a new relationshipwith a community, finding a community connector is a good place to start. It is often valuable to have a trusted community leader introduce you to a community. Think about people you may already know through board or committee members.

• Spiritual or Faith Communities
• Community Leaders
• Cultural Events & Celebrations
• Community Meetings
• University Cultural Unions or Services
• Community Centers (neighborhood, LGBTQ+, public health)

Other Avenues

• Community Newsletter
• Community Radio Shows
• Community Health Center
• Social Media / Listservs
• Volunteer

Example: An agency wanted to connect with African American/Black fathers of children with special health care needs. The staff made a connection with a African American/Black faith community through attending a black history course. It turns out that this community’s church had a men’s group. Through the spiritual leader, a message was sent to the men’s group asking if any of them were fathers of children with special health care needs who might be interested in helping out a service program. Through that process, four people with lived experience were identified and introductions were made.

"I don't know anyone, but I know a program that has that relationship!"

If you/your agency does not have the relationship or the connections to build a relationship, then start looking at who already has the relationships. Find programs that are trusted in the community already and forge a partnership with them to better meet the needs of the community. Think about health care, public health or social service programs. Can you barter with a program to carry your message to the community? That is, offer something that supports their program if they help carry your message to the community. Most often, both programs can benefit from the partnership.

 

Do you have a relationship with the community?

YES? — Engage!

NO? — Do you want to build relationships?

 

 

Linking to the MCH Leadership Competencies. Understanding the relationship 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.

• 8S6: Collaborate with organizations that are led by people with lived experience to build and deepen involvement across all MCH programs.
• 8S7 Use feedback from people with lived experience, and community members, obtained through focus groups, surveys, community advisory boards, and other mechanisms as part of the project's continuous quality improvement efforts. Monitor and assess the program overall for effectiveness of partnerships between professionals and people with lived experience.
• 8S9 Assist health care professionals, organizations, and health plans to develop, implement, and evaluate models of family-professional partnerships and direct partnerships with self-advocates.

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.

• Expanding the Table: Building Bridges to Effective Engagement of Underrepresented Groups in Your Systems of Care. Year Developed: 2023. Source: The National Training and Technical Assistance Center for Child, Youth, and Family Mental Health (NTTAC). Presenter(s): David Armstrong, Rose Daniels, Tyler Goddard, Manny Hernandez, Bryon McClure, and Sarah Miller. Type: Webinar. Level: Introductory. Length: 76 minutes.
• Eight Strategies for Creating a More Inclusive Volunteer Program. Year Developed: 2020. Source: The Forum on Workplace Inclusion. Presenter(s): Lisa Joyslin Type: Webinar. Level: Introductory. Length: 85 minutes (presentation begins at 25.00).
• 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.
• Addressing Structural and Research Team Barriers to Recruiting Marginalized Population. Year Developed: 2023. Source: Knight ADRC. Presenter: Consuelo Wilkins. Type: Conference Presentation. Level: Introductory. Length: 20 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. Length: 60 minutes.
• Collaboration and the Early Years: Exploring the Benefits and Challenges of Integrated Working. Year Developed: 2022. Source: Anna Freud National Center for Children and Families. Presenter(s): Marvyn Harrison, Claudia Coussins, Sanjana Jio, and Abigail Wright. Type: Panel Discussion. Level: Introductory. Length: 90 minutes.
• Health Equity in Action Summit – Collaborating to Improve Maternal and Child Health Outcomes. Year Developed: 2022. Source: Pfizer. Presenter(s): Jamila Taylor, Angela Aina, Brisa Urquieta de Hernandez, and Jamila Perritt. Type: Conference Panel Discussion. Level: Introductory. Length: 55 minutes.
• Leveraging Feedback in Community Engagement. Year Developed: 2019. Source: Switchboard TA. Presenter(s): Brianne Casey, and Rebecca Mulqueen. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Serving on Groups That Make Decisions: A Guide for Families. Year Developed: 2023. Source: WI FACETS. Presenter(s): Jan Serak. Type: Webinar. Level: Introductory. Length: 60 minutes per training.
  • Opportunities to Get Involved & Types of Groups (Sections 1 and 2).
  • Processes Groups Use (Section 3).
  • Tools & Tips (Sections 4 and 5).
  • Understanding & Using Data (Section 6).
  • The Role of Families and Skills for Serving in Groups (Sections 7 and 8).