On March 28, the Health Activist Network hosted an event that served as both an advocacy workshop and the beginning of a full-court press on creating the kind of adolescent behavioral health system that our region deserves. More than 60 attendees gained insights on effective advocacy from individuals who have rallied around children on the autism spectrum in Pennsylvania, and identified opportunities to apply similar strategies to efforts around adolescent behavioral health. The event also featured a panel discussion on engaging parents and teens in behavioral health advocacy, featuring youth and family support specialists who use their lived experience to help others enduring similar challenges.
“We have learned that adolescent mental health crises are ‘wicked problems’—their roots extend well beyond biological predisposition and the unsettling nature of adolescence,” said JHF President and CEO Karen Wolk Feinstein, PhD, while kicking off the March 28 event. “Services are not built around the needs of teens and families, and there are complexities in coordinating care across the siloed systems of mental and physical health, education, and juvenile justice."
“We are launching,” Dr. Feinstein continued, “a statewide advocacy effort around an urgent call to increase resources for teen behavioral health, foster workforce development, and improve the quality of care. We are bringing together the work and commitment of existing advocacy groups as well as the voices of parents and teens who have experienced a crisis. This is a bipartisan, social imperative, and we need your help.”
An increasingly coordinated system of care has been created for children on the autism spectrum in Pennsylvania, thanks in part to parents and other advocates who have worked to destigmatize autism and push for policy changes. To learn from these efforts, the Health Activist Network event featured presentations by Gary Blumenthal, VP of Strategic and Special Projects at PA Advocacy and Resources for Autism and Intellectual Disability, and Lu Randall, executive director Autism Connection of PA.
Blumenthal, a board member of the National Council on Disability during the Obama Administration, said that he became an activist when his brother was denied services years ago in Kansas. So he ran, successfully, for the state legislature.
“If you can’t get decision-makers to listen, become a decision-maker,” Blumenthal said.
He also encouraged attendees to engage policy-makers on the importance of person-centered planning, and to ask specific questions—for example, what do legislators know about funding streams for services, or gaps in coordination?
Randall, who has also worked as a mobile therapist and therapeutic staff support worker, noted that effective advocacy is often a blend of science and personal stories. The body of research around autism has increased significantly in recent years. She can, for example, use functional MRI images to show kids and adults what autism looks like in the brain. But youth and adults who are on the spectrum effectively fight stigma, educate the community, and influence policy by sharing their experiences and explaining the supports that they need to flourish.
Laurie Mulvey, MSW, a longtime leader and advocate in child development and family support, then moderated a panel discussion featuring Ruth Fox, CEO of Allegheny Family Network (AFN); Towan Hall, a youth voice specialist for Youth Support Partners; and Crystal Wilson, a youth support coordinator for Youth Support Partners. AFN provides support, training and resources for caregivers of children with behavioral health challenges. Youth Support Partners, a program of the Allegheny County Department of Human Services, trains young adults with experience in some aspect of human services to advocate for and mentor youth going through similar challenges.
Fox said that AFN supports more than 500 families in Allegheny County through one-onone support, support training groups, and events. AFN’s advocacy begins at the provider level, and extends to Harrisburg through staff who sit on the Pennsylvania Mental Health Planning Council.
Hall said he works to support youth so they feel comfortable sharing their stories, and helps them navigate challenges like behavioral health service coordination, education, employment, and transportation. He looks for opportunities to build a sense of community for youth—through game nights and cooking demos, for instance—and engage them in topics they’re interested in, such as the Adverse Childhood Experiences Study and violence in neighborhoods.
“I’m not here to judge,” Hall said. “Over time, you start to see youth open up and the difference you can make it their lives.”
Wilson said that youth support specialists with lived experience can relate to teens in a different way than therapists and other providers.
“We can share our story, and help them build resiliency and natural supports,” Wilson said. “This is something that I wish I had when I was younger.”
The March 28 event was just the beginning of Pennsylvania’s advocacy blitz. You can join the statewide Adolescent Behavioral Health Advocacy Coalition to receive notices about future calls and policy alerts. We will discuss the policy solutions, share resources, identify the right action at the right time, mobilize concerted efforts, and monitor and celebrate our successes.
“We have the ideas, the will, and the players here to make a difference,” Mulvey said at the end of the panel discussion. “Now where do we take it from here?”