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Peer Support:

What are Family Run Organizations?

Submitted by Families Together in New York State

Simply stated Family Run Organizations employ people that have lived experience that is similar, the same or relatable to those that they serve.  A parent with a child that has a need for extra-ordinary supports, finds a sense of relatability with a Family Peer Advocate (FPA) because the FPA has familiarity with what the parent has experienced.  This commonality builds a connection and a level of trust that is somewhat indescribable. While the details of their stories will not be the same, they have both shared the journey of parenting from a non-traditional perspective.  This is an invaluable connection and it can serve as a bridge to other needed supports and services.  A Family Run Organization is put together by parents with the dedication and commitment to serve other families on a larger scale.

Historical Perspective:

In 1984, Congress funded the Child & Adolescent Service System Program (CASSP). CASSP and the National Institute on Disability and Rehabilitation Research (NIDRR) established the first Research & Training Center on Family Support and Children’s Mental Health at Portland State University. The first Federal Funding for a Family Run Organization was in 1988-99.  The first year five states each received $20,000 grants and the following year three states were awarded grants.  In 1989, a 20 person Steering Committee of families voted to form a national family organization. The Federation of Families for Children’s Mental Health was incorporated in Maryland.  In 1992, the Substance Abuse and Mental Health Services Administration (SAMSHA) was created and authorized by congress, to improve the quality and availability of substance abuse prevention, addiction treatment and mental health services. By 1993, SAMSHA funds the Children’s Mental Health Initiative (CMHI) and the term “Family Driven Care” is defined by the President’s New Freedom Commission in 2004.  A Certification Commission for Parent Peer Support Providers was formed in 2011. In 2013 Executive Directors of 16 Family Run Organizations formed an organization dedicated to building leadership and organizational capacity of family-run organizations called the Family Run Executive Director Leadership Association (FREDLA).  FREDLA then becomes a partner in the Technical Assistance (TA) Network of National Assistance and Training Center for Children’s Behavioral Health. 

Source: Timeline of the Family Movement in Children’s Behavioral Health by FREDLA

History in New York State: by Families Together in New York State

What Are Family-Run Organizations? 

The Foundation of a family-run organization consists of four essential elements:

  1. Mission: Dedicated to supporting families caring for a child or youth with mental, emotional, behavioral or substance abuse needs
  2. Governance: Board of the organization is comprised of at least 50% family members with “lived experience”
  3. Personnel: Executive Directors and all staff members providing support are family members
  4. Family Voice: Promotes family voice at all levels of the organization and system. Families with “lived experience” are defined as parents, relatives or foster families who are or have been the primary caregiver for a child with mental, emotional, behavioral or substance abuse needs

Source:  FREDLA “Models of Family Run Organizations

There’s a difference between a Family Run Organization and a Family Peer Support Program. Many family peer support programs are found within larger agencies such as Behavioral Health Programs or Clinics to name a few. Many Family Support Programs do not have the infrastructure to run an entire organization, but rather focus on providing services to families in need of support. Hence, they are incorporated into larger agencies that can carry/provide administrative, and other needed structures and supports. 

What are Family Peer Support Services (FPSS)? 

As defined by the Office of Mental Health in 2014, “Family Peer Support Services (FPSS) are an array of formal and informal services and supports provided to families raising a child up to age 21 who is experiencing social, emotional, developmental and/or behavioral challenges in their home, school, placement and/or community setting.”  The OMH definition goes on to explain that “FPSS are provided by a trained and credentialed Family Peer Advocate (FPA) uniquely qualified to work with families based on their personal experience parenting a child with similar needs and the specialized training they receive.”

Families Together in NYS Inc is the credentialing agent for the New York State Family Peer Advocates and Youth Peer Advocates.  Having a formalized Credential establishes the value and professionalism of Family and Youth Peer Advocates.  It brings opportunities for collaboration and professional development.  Most importantly, the establishment of a credential ensures that all advocates have acquired core competencies of the position of Family and Youth Advocate.  It also provides the possibility of financial reimbursement for their professional services.  Individual agencies will have their own additional training and regulations that advocates will need as well.

Who Supervises Family Peer Support Services (FPSS)?  

Supervision of Family and Youth Peer Advocates follows guidelines and regulations of the individual agency. In regard to supervising advocates Cathy Ciano, Executive Director, Rhode Island Parent Support Network writes: “A good supervisor is paying attention to the needs of their staff and taking the time to make sure they have what they need to do their job well. So many of our families are in severe crisis, and this work can be very emotionally draining. We have learned the importance of striking a balance between meeting the needs of the staff and ensuring the contract and grant deliverables are being met in a timely fashion. Given the culture of a family organization, this is easier said than done. We make training and ongoing professional development a priority for our staff. What sometimes makes this a challenge is having enough time with all of the pressure that comes with this work; however, we see this as critical.” 

Advocates thrive when they have the opportunity for connection and support with other advocates. This time together allows advocates to learn from each other’s experiences as they collaborate and problem solve together. Additionally, it strengthens the individual’s professional development and builds the workforce as well.  A Supervisor of Family Peer Support Services who is an FPA brings that lived experience into the supervisory relationship as well. Clinical Support also brings a strong quality of care perspective to a Family Advocates skillset and professional development.  Getting the best from the Lived Experience and Clinical Perspectives sharing equal value offers an optimal experience.

What Else Do Family Run Organizations Have to Offer?

Family Run Organizations provide an array of opportunities and resources, including:

  • Information and communications network
  • Peer-to-peer support for families
  • Support groups
  • Training for families and professionals
  • Conferences
  • Newsletters
  • Public awareness and information campaigns
  • Connection to informal supports
  • Advocacy for individual families and for systems change within multiple systems including: Juvenile Justice, Child Welfare, Substance Abuse and Education/Special Education
  • Partnership with multiple stakeholders
  • Youth leadership
  • Data and evaluation
  • Cultural brokers and language interpreters
  • Research

In summary, Family Run Organizations offer parents or caregivers who have experienced the range of emotions and complexity of challenges associated with having a child with extraordinary needs that has gone through various systems of care an opportunity to connect with and provide practical wisdom, support, resources, assistance, and hope to other parents and caregivers who are starting out on a similar journey. Family Run Organizations are a also a place for Family Peer Advocates and Youth Peer Advocates to gain confidence and competences as a peer professional.

Source: Models of Family Run Organizations by FREDLA