Introduction
This Introduction provides an overview of why developing an advisory board of youth and young adults with mental health conditions is important and how it can bring value to your organization. It also offers pre-planning ideas for your agency or organization.
Citation: Narkewicz, E. L., McCaffrey, E., & Sudbrock, E. R. (2024). Creating and Sustaining Youth Advisory Boards (YABs): A Toolkit for Health and Human Services. Worcester, MA: UMass Chan Medical School, Department of Psychiatry, Implementation Science and Practice Advances Research Center (iSPARC), Transitions to Adulthood Center for Research.
Overview of Youth Advisory Boards
Structure: YABs are comprised of diverse groups of youth and young adults (ages 14-30) that come together consistently to advise an organization on better ways to serve and support young adults with mental health conditions. They can also be a way for resources to be shared.
Purpose: Boards are developed to provide youth and young adults with a meaningful opportunity to have a voice in decisions made about resources being developed/provided, policies, and services for this age group.
Leadership/Organization: Youth Advisory Boards should be run by and for young adults, with “silent” support from the organization’s leadership (Martin et al., 2007).
Membership: Based on your organization’s needs and clients, members can be between the ages of 14-30 and should self-identify as having a mental health condition. In this toolkit, we will use youth and young adults interchangeably to refer to people ages 14-30.
Setting: This toolkit was designed for agencies serving youth and young adults with mental health conditions. However, these principles of incorporating the voice of youth with lived experience can be more broadly applied to create an advisory board for young adults in a variety of settings.
Diversity: Your advisory board should prioritize membership diversity, intentionally recruiting those who have traditionally been marginalized (e.g., Black, Indigenous, and other people of color (BIPOC), juvenile justice and foster care involved, and LGBTQIA+ community members). It should also reflect the community served.
Implementation: Advisory boards can be hosted in a variety of settings and modalities. There are special considerations that need to be taken when working with a young adult age group to make youth advisory boards (YAB) successful. Additionally, building in time to seek and incorporate YAB input in your agency’s processes and procedures is key for successful YAB implementation and utilization.
The Value of Youth Advisory Boards (YABs)
Improved Service Design: Advisory boards – also known as advisory councils – are an excellent way to ensure supports and services are accessible and relevant to the population being served. They provide a structured way to include the ongoing feedback and input of the population you serve, who are the most impacted by decisions made about services.
Increased Youth Voice: YABs are becoming more widely used to infuse young adult voice into supports and services. They are a mechanism for your organization to include genuine youth voice versus tokenism. By creating a YAB you will be investing in the young adult members, their perspectives, ideas, and experiences.
- Organizations tokenize young adults when they showcase their participation but do not give the young adults any real power.
- Organizations that include genuine youth voice allow young adults to influence and participate in decision-making.
Avoiding Tokenism When Engaging Young People
Assessing Youth Voice by Youth MOVE National
Interested in Creating a YAB? Check out the information below on young adults with mental health conditions and the questions you should ask before you are ready to start your own YAB.
Young Adults with Mental Health Conditions
According to the National Institute of Mental Health (NIMH) nearly one in five U.S. adults live with mental health conditions. Young adults (18-25) experience mental health conditions at an even higher rate (29%). No two mental health conditions are the same in how they impact an individual’s everyday life. Common mental health conditions include:
- Anxiety disorders
- Attention Deficit Hyperactivity Disorder (ADHD)
- Bipolar Disorder
- Borderline Personality Disorder
- Depression
- Dissociative disorders
- Eating disorders (ED)
- Obsessive-compulsive Disorder (OCD)
- Posttraumatic Stress Disorder (PTSD)
- Psychosis
- Schizoaffective Disorder
- Schizophrenia
When running a mental health YAB, it can be helpful to have a general understanding of 1) mental health conditions, 2) the effects they can have on young adults, and 3) treatment options. Having a mental health condition can impact many areas of a young person’s daily life and independence, including:
- Completing High School
- Attending College
- Getting a job
- Getting a driver’s license
- Living away from home
You can learn more about youth and young adult mental health by looking at the resources below.
- How to Talk about Mental Health: Addressing Misunderstandings about Mental Health in the Media Tip sheet
- Becoming an Adult: Challenges for Those with Mental Health Conditions Research Brief
- Supporting Employment for Young Adults Living with Mental Health Conditions Brief
- Supporting the Educational Goals of Young Adults with Mental Health Conditions Tip Sheet
According to our own YAB, your organization does not need to be an expert on mental health prior to starting a mental health-related YAB. It’s much more important that an organization come to the YAB with an open mind, absence of stigma, willingness to learn, and respect for the lived experience of the YAB members.
Developing effective mental health services for this population requires a better understanding of the individual experiences of young adults. A mental health YAB can help your organization accomplish this.
Questions to Ask Before Creating a YAB
Why do you want a YAB?
Before you begin planning for a YAB, it helps to identify what needs a YAB could meet in your organization. Think through the following questions:
- What would be the goal of the YAB?
- What questions, projects, and initiatives do you want feedback on?
- What need would the YAB fill?
Who Benefits from a YAB?
In a successful YAB, both the organization and YAB members have an opportunity to benefit.
- Benefits to the Organization:
- Build relationships with the community you serve
- Get feedback to improve programs and services
- Identify staff training needs
- Create collaborative change that benefits young adults
- Benefits to the Young Adults:
- Share their mental health needs
- Increase awareness about mental health challenges
- Shape organization policies and programs to be relevant to their experiences
- Gain professional experience
Is Your Organization Ready for a YAB?
After thinking through the initial questions of putting together a YAB, it is time to create a plan and outline. If your organization is interested in creating a YAB for young adults with mental health conditions, you will need to:
- Ask yourself if your organization is really ready for a YAB.
- Is your organization willing to change its processes and timelines to meaningfully incorporate youth voice? If so, then move on to the next steps!
- Identify the person or people who have time to devote to running a YAB.
- Commit to understanding and working with young adults with mental health conditions.
- Learn effective communication, facilitation, and active listening skills.
If after reading through this toolkit you decide your organization does not have the staff, funds, leadership buy-in, skill set, or time to start and support an advisory board, this doesn’t mean you have to abandon the idea of incorporating youth voice in your work altogether. Other ways to engage the youth you serve & seek their feedback are:
- Surveys
- Focus Groups
- Interviews
- Hosting a panel
- Attending community events or meetings
- Hiring young adults with lived experience of a mental health condition
Informational Resources:
- The How-Tos of Engaging Community Stakeholders and End-suers using Advisory Boards
- YAB Goal Planning Worksheet
- Building a Community of Practice to Support Young Adults with Serious Mental Health Conditions
- Young Adults Getting Involved: Participatory Action Research and Transition Age Youth
- YouthMove #Things2Consider When Starting a YAB