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Help us grow: Family-led organizations gather for regional summit in Philadelphia

Philadelphia System of Care recently co-hosted a regional Family Navigation Summit. The morning session focused on birth-five models of navigation for families of children with autism. Presenters included programs such as Mind the Gap, Children’s Hospital of Philadelphia, Communication Connection, and National Help Me Grow.

In the afternoon, family organizations from across the region (Pittsburgh to the State of Delaware) came together in the City of Brotherly Love to share lessons learned as well as challenges in leading family-run organizations that provide family peer support. The family organizations, including Allegheny Family Network, Autism Delaware, Champions for Children’s Mental Health, and Parent Involved Network, are led by family members with lived experience of child-serving systems and represent a range of services and programs.

Allegheny Family Network (AFN) is a leader in the movement of family-run organizations. Ruth Fox, AFN’s Chief Executive Officer, reminded the audience how important it is for family organizations to think strategically as a business and to demonstrate the “added value” of having family peers at the table.  AFN provides a comprehensive service array of family support, education, and advocacy to holistically support families of children with mental health challenges. Their organization employs over 40+ staff and maintains a multimillion dollar budget to reach families across Allegheny County.

Other programs, such as Champions for Children’s Mental Health (CCMH), have come a long way and are still growing in their first years as an organization. Individual family peer support services didn’t exist when Barb Messick, Executive Director for CCMH, struggled to find quality mental health treatment for her children. Her desire to see families (like her own) get connected and to feel supported in their journey fueled Barb’s motivation to start a family-led organization. Champions became incorporated and begin serving families in 2016, under a federal System of Care grant. CCMH now has the capacity to serve over 120 individual families face-to-face at any given time across the state of Delaware. “We meet the family where they’re at- in the home, an IEP meeting at school, in court, at the doctor’s office- wherever they need support.”

Empowering families with lived experience is a national trend that continues to grow and expand locally as well. In fact, Philadelphia has been a forerunner for providing family peer services. Since 1984 Parent Involved Network (PIN, under Mental Health Partnerships) has provided individual support and system advocacy for Philadelphia families. Wanda Cummings, Program Manager at PIN, highlighted the important work staff at PIN do every day. “We are parents who use our personal experience to inspire hope and provide support as well as information to families of children/youth with emotional or mental health issues who are facing similar challenges,” Cummings shared. PIN provides multiple services to the community, including information/referral, parent education and training, professional collaboration, and one-to-one advocacy for families. Family peer support partners from PIN also provide onsite support for families and caregivers of children seeking treatment in the Children’s Crisis Response Center.

The afternoon session of the summit also highlighted ongoing plans for Philadelphia’s first Family Legacy Organization (FLO). This family-led organization is made possible by the partnership between Philadelphia Parents Involved Network (PIN), Philadelphia System of Care, and the Department for Behavioral Health and Intellectual disAbility Services. Standing on the unique strengths within Philadelphia, the new FLO will build on the rich history of family peer support services provided by PIN and expand to serve more families and develop additional programs under the leadership of a family-led governance board and executive director with lived experience. The Philadelphia FLO is currently interviewing board candidates. Next steps include establishing officers, hiring an executive director, and filing as an independent, non-profit organization in the Fall of 2018.

As the Commonwealth of PA is working toward a state credential for this new workforce of families, Philadelphia continues to lead the charge and is currently piloting training for Family Peer Support Specialists. The intention is to provide a high-quality support service that meets consistent standards across the State and to open potential funding mechanisms as a Medicaid reimbursable service. With the strong foundation of PIN and the amazing local family-led organizations that have guided the way, the Philadelphia Family Legacy Organization is poised to grow and succeed.

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