People with Lived Experience

By leading with an asset-based approach, the outcome is more likely to be a good fit for the community. The best way to identify issues and concerns is to ask the people in the community. Always remember, the challenges that exist are not a reflection of the people in that community.

Strength based leadership pays attention to everyone’s strengths and uses those strengths to support the project. Asset-based thinking means you look at yourself and the world through the eyes of what is working, what strengths are present, and what the potentials are. It is founded on the belief that communities and neighborhoods thrive when built upon the knowledge, interests, and capacities of their residents, groups, and institutions.

Tips to generate ideas from everyone

• Begin each meeting with a not too personal ice-breaker.
• Go around the group asking each person in the meeting to make a comment.
• Use 1-2-4-all or pair shares as a technique to allow people time to formulate their ideas.
• Consider general norms and agreements, like listening with an open mind, being non-judgemental, using"I" vs "You" statements, not interrupting, etc.
• Invite the quieter people to take a particular role within the meeting, if they are comfortable.
• Acknowledge the desire to hear from everyone openly in a meeting, and invite the more vocal people to
  try to speak less often.
• Use Brainwriting when you think you want to use Brainstorming – it involves more ideas from everyone.
• To keep communication open, invite everyone to share additional thoughts and ideas after the meeting - as this may be an option for quieter folks rather than having them speak during a meeting which may not be comfortable for them.

Donna Hicks' Dignity Model

"The Dignity Model provides a framework for understanding how the experience of dignity can help strengthen relationships, resolve conflicts, or make organizations more successful, and how violations of dignity inevitably damage relationships, incite conflicts, or undermine organizational cultures."

Ten Essential Elements of Dignity

1. Acceptance of Identity
2. Recognition
3. Acknowledgment
4. Inclusion
5. Safety
6. Fairness
7. Independence
8. Understanding
9. Benefit of the Doubt
10. Accountability

Ten Temptations to Violate Dignity

1. Taking the Bait
2. Saving Face
3. Shirking Responsibility
4. Seeking False Dignity
5. Seeking False Security
6. Avoiding Conflict
7. Being the Victim
8. Resisting Feedback
9. Blaming and Shaming Others to Deflect Your Own Guilt
10. Engaging in False Intimacy and Demeaning Gossip

Create leadership opportunities, for example, to:

• Serve as a co-chair or chair of a meeting.
• Take the lead on a project or the evaluation.
• Lead the discussion on an agenda item.
• Connect to community resources.

Linking to the MCH Leadership Competencies. Understanding the strengths and assets 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.
• 8S10: Incorporate content about partnerships between people with lived experience and professionals into health professions and continuing education curricula and assess the impact of this training on professional skills, programs, and policies.

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.

• Evidence for strengths and asset based approaches for social work. Year Developed: 2019. Source: National Institute for Health and Care Excellence (NICE) and the Social Care Institute for Excellence (SCIE). Presenter(s): Charolette Guling, Rebecca Spell, and Andrew Baron. Type: Webinar. Level: Introductory. Length: 60 minutes.
• Identifying Community Health Needs and Assets (Community Toolbox Module 2). Year Developed: 2012. Source: Kansas Department of Health and Environment with the KU Work Group for Community Health and Development. Presenter(s): n.a.. Type: Online Course. Level: Intermediate. Length: 45 minutes.
• Measuring Family Engagement in MCH Research: Opportunities and Challenges. Year Developed: 2018. Source: U.S. Maternal and Child Health Bureau, Office of Epidemiology and Research. Presenter(s): Christina Bethell, PhD, MBA, MPH; Clarissa Hoover, MPH. Type: Webinar. Level: Intermediate. Length: 57 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. 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.
• Authentic Parent & Professional Partnerships. Year Developed: 2021. Source: Family Voices of MN. Presenter(s): Carolyn Allshouse. Type: Webinar. Level: Introductory. Length: 73 minutes.
• Self-advocacy in the Healthcare System. Year Developed: 2021. Source: APFED. Presenter: Patti DeMuri. Type: Webinar. Level: Introductory. Length: 48 minutes.