"Before there was a national organization, there were individuals" begins an early newsletter article about the National Federation. These individuals, the founding grandfathers and mothers of our movement -- a collection of parents and caregivers -- started a series of events in the late 80's that would, ultimately, lead to the formation of a then, yet unheard of type of movement, one that would rapidly elevate the field of mental health to a whole new level.
The family movement can trace its roots back nearly three decades, beginning with a group of parents dissatisfied over the treatment of their children within many of the child serving systems. For example, only half of their children were in school, and of the half who were not, 75% were in the juvenile justice system. Some parents were forced to give up custody of their children in order to receive services.
In 1982, Jane Knitzer, a renowned researcher, defined the problem in an issue brief. “Unclaimed Children” turned the spotlight on a group of children and youth with the most serious disorders who were largely ignored and underserved by the mental health system. Her detailed descriptions were so engaging they set the stage for public conversations on these important issues to improve services for families living with mental health problems and psychosocial disabilities, especially in low and middle-income areas where effective services were often scarce.
In 1986, Portland State University Research and Training Center on Family Support sponsored the first Families as Allies conference. Bringing together a diverse group of individuals looking to network with each other, this landmark meeting became a catalyst for the family movement, if not in part due to the conference's novel theme, well ahead of its time: "Families and Professionals Working Together."
Shortly into the meeting, those in attendance quickly realized that they all shared common issues, a common connection that bonded them together: all families were going through the same experiences when it came to being a voice for their child(ren) with mental health challenges.
This realization led to families networking together at every opportunity they were given as they quickly noticed that a collective voice was stronger than a single one, a collective that shared enlightening and thought provoking stories around children who have from mental health challenges and their families.
Around the same time, a new stream of support for the federally funded Child and Adolescent Service Systems Program (CASSP) gave families an opportunity to take their experiences nationwide and present at important meetings. By this point, the family movement was starting to get into full swing as Barbara Friesen and Naomi Karb arranged for a group of parents to talk with Madeline Will and Patty Smith, two senior officials in the Department of Education. This meeting marked the first time parents had the opportunity to talk with high-ranking, national officials from the Department of Education about the issues facing families of children with mental health needs. The discussions that took place at this meeting led to support for an additional important meeting.
In December 1988, Portland State University Research and Training Center on Family Support with the National Institute on Disability and Rehabilitation Research (NIDRR) co-hosted a conference in Arlington, Virginia. This "Next Steps" conference served the sole purpose of creating an agenda for children's mental health. That meeting was attended by 75 parents and 25 professionals.
At this point, the movement was growing and it was decided by the attendees that a Steering Committee should be put into place to further discuss this issue and determine "next steps" (hence the name) for taking and improving children's mental health services on a national scale. Completely consisting of families with children who had mental health needs, its inaugural members included Danny Amrine (Oklahoma) , Ederle Brooks (D.C.) , Al Duchnowski (Florida) , Glenda Fine (Pennsylvania), Carol Freebairn (Arkansas), Gloria Graves (Kansas), Marilyn and David Henry (Pennsylnavia), Barbara Huff (Kansas), Yvonne Jacobson (Alaska) , Dixie Jordon (Minnesota), Naomi Karp (Virginia) , Creasa Reed (Kentucky), Marge Samels (Maryland), Bonnie Shoultz (New York), Judith Sturtevant (Vermont), and Jane Walker (Maryland). Ann Turnbul (Kansas) and Barbara Friesen (Oregon) served as facilitators.
Around the same time, we embarked on another ambitious task. For years, many of our chapters had been holding events during May to create awareness around children's mental health. These chapters asked if the National Federation could head up a national event in support. As a response, the National Federation of Families for Children’s Mental Health declared the first full week of May as National Children’s Mental Health Awareness Week.
The first funding cycle from the National Institute of Mental Health funded the first five family-run organizations which were established in Vermont, Hawaii,
In February 1989, this twenty-man Steering Committee met in the basement of Naomi and Gene Karp's home. After hours of discussions, it was decided and voted on to form a national parent-run organization that would speak on behalf of children with mental health needs and their families.
Eager to get started, the Steering Committee, representing 16 states, became the Interim Board. Barbara Huff was elected Interim President by this group of parents. Barbara would guide the group while establishing the foundation of the organization.
In September 1989, less than nine months later, the Federation of Families for Children's Mental Health was incorporated in the State of Maryland. Bylaws were adopted and an application was completed for 501(c)3 tax status. We were well on our way to becoming a reputable and influential non-profit, as it quickly became evident that we were the one and only family voice for children's mental health.
By the spring of 1991, we were well over 500 members strong. We were quickly becoming an extensive association of parents, caregivers, and other individuals who were joining the organization by word of mouth. This landmark number, the first as an established family-run organization, proved to be extremely successful in laying the groundwork for what would become some or our most exciting and influential years in the field.
In 1992, the National Federation of Families for Children's Mental Health received a grant from the Annie E. Casey Foundation to undertake a major role in their Urban Children's Mental Health Initiative. This grant enabled the National Federation to open its national office in Alexandria, Virginia. In October 1992, Barbara Huff was named Executive Director and Mary Telesford was hired as the first employee. This milestone marked the unofficial start of our organization as Barbara Huff would transition over from Interim President to full-time Executive Director. With this newfound position, Barbara would work toward creating a series of additional milestones that allowed us to expand our reach further and would continue this way well into the new millennium.
As the Millennium approached and passed, Barbara Huff continued serving as the founding Executive Director. In September 2004, she would end her run of twelve years (fifteen total) and Sandra Spencer would be named as her successor. With this leadership change also brought many important changes at the national level that would affect our work going into the current era. One of them would be our biggest task yet. In 2004, after the release of the 2003 President’s New Freedom Commission on Mental Health report “Achieving the Promise: Transforming Mental Health Care in America”, the National Federation was tasked with formally defining the term “family-driven”.
The Commission report outlined, as one of its goals, that mental health be consumer and family-driven. Family members came together to come up with the definition which has become a cornerstone of our work -- the family-driven definition is still used today across the country in the implementation of community based systems of care for children and families. Jane Adams, who served as the Federation's representative on the new freedom commission, coined the term family-driven, which was ultimately written into the final report and then defined by a Federation workgroup including Gary Blau, Trina and David Osher - Shortly after the creation of this definition, the National Federation developed a curriculum, “On the Road to Family Driven Care". This training, highly respected in the field, has trained family members and providers all over the country on the principles and values of family-driven care.
Each year since then, National Federation partners and more than 120 Federation chapters and state organizations are invited and encouraged to participate in a weeklong celebration of advocacy and awareness efforts. Along with our first National Children’s Mental Health Awareness Week, the National Federation branded a green ribbon bearing the words, Children’s Mental Health Matters. This has become a long tradition, helping to create awareness wherever our community's advocacy efforts might take them. Today we distribute over 100,000 green ribbons each year from our National Office.
In 2009, we celebrated our 20th Anniversary. Much like our 10th, it was filled with lots of excitement and nostalgia as we reflected on all the great work we had done until then. That year, at our conference, we had Holly Robinson-Peete speak and held numerous plenaries that showed the progression of our advocacy efforts, including a timeline of events that led us to the current age.
Our journey takes us into the current era where we have continued to grow and build upon the strengths we started 25 years ago. The annual National Federation conference continues to be our largest event. With participation between 800 - 1000 individuals each year, the program and agenda has grown. The addition of a youth leadership track has allowed the National Federation to realize its vision of empowering our youth. Our policy work has taken us to the White House several times in the last year. The National Federation has been a part of Vice Presidents Biden’s task force on gun violence control and improving mental health access. We have also worked with the President’s office offering input on the Affordable Care Act. The National Federation invited 15 of our chapter leaders to a White House briefing of the ACA last year. The National Federation continues to provide a host of resources, bringing forth the family and youth voice to additional White House and Congressional hearings. Our voice was evident in the President’s address at the first ever White House Meeting on Mental Health. The President addressed the need to listen to and value the voices and experiences of families and youth. He also took note and repeated our message of not associating mental illness with violence because doing so adds to the stigma that keeps people from seeking the help and support they need. In 2010 the National Federation launched the Parent Support Provider Initiative. This initiative was a way to validate the work of the parent peer support role. We did a job task analysis and developed national standards for a Parent Support Provider Certification process.
In late 2011, the National Federation had its first cadre of Certified Parent Support Providers (CPSP). We have nationally certified about 150 family members as CPSPs. In 2015, we look to double that number. The National Federation continues to offer training and technical assistance to SAMHSA funded systems of care grantees, provider organizations, state agencies and others on the value and principles of family-driven care and engaging family and youth in the planning process, as well as implementation and evaluation of any and all services and supports for children and youth with mental health challenges and their families.