As someone who has been involved with the National Federation of Families for Children’s Mental Health since its infancy 27 years ago, I feel compelled to speak out on a difficult topic that many in the children’s mental health community speak about privately, but not publicly – “What has happened to the National Federation?”

I admit, with some chagrin, that I have been one of those whisperers, lamenting privately to colleagues about what appears to be a loss of focus and direction on the part of an organization that was once the fiercest, most laser focused voice for children with mental health challenges and their families in the United States.

As head of the Children’s Mental Health Network, I get a steady stream of emails and calls from family members who ask, “Where is the voice for children and families?” “Who will speak on our behalf?”

These are important questions.

So who should speak on behalf of children with mental health challenges and their families? Should the Children’s Mental Health Network assume the mantle of the “family” voice of families for children with mental health challenges and their families? What about Mental Health America, or the National Alliance for the Mentally Ill, or even the new kid on the block, the Family Run Executive Director Leadership Association? My answer to all four is a resounding no, and here is why:

Option 1: Children’s Mental Health Network (CMHN) – not a good idea
When we started the Network, there was more than a little buzz and concern from sectors of the children’s mental health world that we might be trying to “take over” the family voice. Five years later, I think we have proven to all that our concept of “collective voice”, while embracing family voice, equally embraces the voices of all who are interested in promoting effective services and supports for youth with mental health challenges and their families. Also, we welcome and encourage the expression of widely divergent views, sometimes providing a stage for those who may not be solely focused on a purely family-driven focus. Such is the nature of the Network, and an approach I cherish. We provide an important forum for the exchange of differing viewpoints on what is best for children with mental health challenges and their families – a forum that did not exist until the Children’s Mental Health Network was formed. We have plenty of National Federation members who are active followers and more than a few who have represented the National Federation on our Advisory Council and Board. However, our scope and mission is different than that of a family organization that is driven by and solely focused on the needs of families from the perspective of families.

Option 2: The National Alliance for the Mentally Ill (NAMI) or Mental Health America (MHA) – a really bad idea
Okay, what about NAMI or MHA assuming the mantle of “voice for children with mental health challenges and their families”? Both have well established organizational structures. Both are recognized far and wide as voices for individuals with mental health issues and their family members. Why not one of these? It would be easy. Just shift all of the Federation chapters under either of these organizations and be done with it. That would give immediate “credibility” to Federation chapters who are currently searching for direction from their national organization.

Problem solved, right? Wrong. For the National Federation to be subsumed under the mantle of other national organizations like Mental Health America or the National Alliance for the Mentally Ill, or any other “parent” run national organization, would be a travesty, and would set the family advocacy movement back 30 years.

And here is why –

One of the defining moments of my professional life was participating in a meeting in Washington, DC in the mid- 1980’s to discuss a national plan for children’s mental health. There was much discussion about “what families needed” and the room was filled with the children’s mental health movers and shakers of the time. I was tapped to be one of the facilitators for the meeting, at the time a mostly green and wet behind the ears young buck in my twenties. Talk about an opportunity to test the concept of neuroplasticity!

At the end of the meeting, we scheduled time for closing comments. I’ll never forget the small group of courageous parents who lined up at the microphone, and one by one, told the group of experts that even with all of the knowledge and brain power in the room, what was being discussed did not fit with what they needed. NAMI was not the answer, as so many NAMI families had an experience base that started when their children were young adults, experiencing the first symptoms of schizophrenia. As such, the mindset of NAMI was focused on brain disease, and for these brave parents with young children experiencing behavior problems, the answer did not lie in the NAMI model. They also spoke of how MHA was not the answer, as the focus of most MHA chapters around the country was on adults. CHADD was not the answer; Parent Training Centers were not the answer, and on and on. They spoke of needing an advocacy voice that spoke to the specific challenges they were facing. And none of the established mental health advocacy organizations spoke directly to their needs. So one by one, they looked at the representatives from NAMI and MHA and the other assembled representatives from a variety of children’s mental health groups and said quietly, but firmly, “We need something different.” What made their comments even more powerful was that several of them were either NAMI or MHA members. They weren’t dismissing the good work these organizations did, they were just acknowledging openly, that for them, there was an advocacy void around the needs of families with children like theirs that needed to be filled.

After that meeting, several forward-thinking professionals created an opportunity for these parents to meet, conceptualize and formalize what would become the Federation of Families for Children’s Mental Health.

• You can read about the history of the National Federation of Families for Children’s Mental Health here.

Sadly, 30 years later, I increasingly hear from families asking for a national family organization to fill the family-driven advocacy void – something different from NAMI, different from MHA – something like the Federation of old. When I ask people to be a bit clearer about what they mean, I often get an answer like, I don’t know, we need something like the Federation used to be. We just need it.”

Hey, I understand the feeling. We need the Federation to be like it used to be. The voice of families is unique and is to be cherished, and it feels like it is slipping away.

Option 3: The Family Run Executive Director Leadership Association (FREDLA) – yet another really bad idea
Born out of frustration with the challenges the National Federation was going through, and a desire to do something to stimulate cohesion among family advocacy leaders, several Federation chapter and state organization executive directors created the Family Run Executive Director Leadership Association (FREDLA) in 2013. The idea was to create a vehicle for Executive Directors to be able to mentor, partner, and in general, strengthen the sustainability of family-run organizations across the United States. FREDLA is not exclusive to Federation chapters and welcomes any and all family-run organizations. And for its mission, this makes perfect sense. According to the FREDLA website, “FREDLA is a dynamic, new organization dedicated to: building leadership and organizational capacity of state and local family-run organizations focused on the well-being of children and youth with mental health, emotional or behavioral challenges and their families.” While a noble and important goal, helping organizations sustain themselves is different from being a fierce advocate on behalf of children and families. FREDLA’s fiscal survival as an organization is currently dependent on technical assistance contracts that leave no room for raw, to the point, advocacy. Many talented and seasoned Executive Directors from Federation chapters are at the helm of this organization, and that is a good thing. But make no mistake. What FREDLA provides is primarily technical assistance and networking. And while TA and mentorship among colleagues are critical to emerging organizations, they do not come close to the fire and brimstone advocacy that formed the foundation for the National Federation of Families for Children’s Mental Health.

If not the CMHN, NAMI, MHA or FREDLA, who should assume the mantle as the voice for families who have children and youth with emotional challenges?

The National Federation of Families for Children’s Mental Health – an excellent idea!
Yes, the very organization that I have been seriously questioning is the one that I think needs to step up to the plate. There just has to be a Federation. For close to 30 years, there have been parents involved with the Federation, who have given so much of themselves to ensure that the voices of families like them are heard. That voice has grown significantly quieter the past several years and is in danger of going away completely. It would be a shame to see the voices of families who have children with emotional challenges being once again relegated to the back of the room in national advocacy discussions about children’s mental health. The fire in the belly that I witnessed in the mid 80’s needs to be rekindled.

Here are three things the National Federation can do to stoke those embers and turn them into flames:

• Exhibit total transparency regarding the search for an Executive Director
  In the first two months after the previous Executive Director stepped down, I estimate that I received 7 – 10 calls per week asking the question, “What is going on with the Federation’s search for an Executive Director?” Now that several months have gone by, I get the question maybe once a week. This declining interest in the Executive Director position should concern the National Federation Board. Let enough time go by and people begin to lose interest and look elsewhere to fill their advocacy needs. If there is not active information sharing with the general public to instill confidence that there is an active succession planning process in place, then people will lose interest and look elsewhere. I would imagine that the lack of public information on the search process has also made it difficult for the interim director to be effective. I am sure there is a plan in place, and there may be elements of the planning process that need to stay in-house, but it is important to let chapters, individual members, and the general public know at least the broad-stroke plans for filling this position.
• Assemble a team of trusted member organization leaders to assist in strategic planning
  The Federation Board is strongly encouraged to involve actively the membership and key Federation chapter leaders to be a part of thinking through what the future should look like for the National Federation. A mixture of those who were part of the revolution at the beginning and those who have come later and can provide insight into current day realities would be most important to include. It would be a huge mistake on the part of the current Board of Directors to think they can do this on their own. Active chapter and individual member involvement are a must.
• Run, don’t walk, away from federal funding
  Ah yes, federal funding – the blessing and the curse for most not for profit organizations who come to rely too heavily on its largess. I have watched the National Federation grow increasingly dependent on federal government funds to keep its doors open. Taking federal money in and of itself is not necessarily a problem. But when reliance on these funds far exceeds any other funding source, the ability to be a strong advocate pretty much goes out the window. You can be the most amazing producer of quality training materials developed under a federal contract, you can provide excellent technical assistance on how to involve families in system level decision-making, but you can’t advocate against the increasing injustice in the mental health delivery system on the federal dollar. The more training and technical assistance you do, the less “in your face” advocacy you will be able to do. It was that “in your face, we are here, and we are not going away” advocacy that defined the Federation in the early days of its existence. If the Federation is going to survive as a national advocacy organization and truly advocate, it will need to get back to its advocacy roots, based on the rock-solid credibility of lived experience that is never beholden to anything but the truth.

  The most “tough love” way to do that in my opinion is to walk away from the lure of federal funding for any support. The same goes for funding from the pharmaceutical industry. We need the National Federation to be free, unfettered and proudly standing in the front of the line making a strong presence felt in national conversations about the role of families in shaping mental health reform.

I don’t know the future of the National Federation, but I do know the significance that this tiny organization brought to the children’s mental health world. We would not be using the language of “family-driven” were it not for the Federation. Without the Federation keeping professionals honest, the early pioneering days of parent-professional partnership efforts would have fizzled or would have morphed into the type of condescending, co-opted partnerships that have defined the type of parent-professional collaboration that we, unfortunately, are beginning to see more and more of.

Changing minds and hearts about what it means to be family driven, what it means to advocate fully on behalf of children with mental health challenges and their families is not a “one and done” deal. It is a grind, and when you let up, the inevitable inertia and gravitational pull towards professional domination sets in. We are seeing that right now, most glaringly in discussions in Congress about mental health reform. The voice of the families the Federation represented for decades is but a mere whisper.

To the Board and staff of the National Federation – You know I love you and yes, I am a bit strident in this Morning Zen post. But the time is now for all of us to be a bit strident. I both applaud you and challenge you to face head-on the decisions you must make about the organization we all hold so close to our hearts. Advocacy first, pure and simple. The fancy offices, caché of Washington, DC, are but mere traps, subtly designed to water down your message as others siphon off your power. Change your look if that is what must happen. Change your address if that is what is needed. But don’t change what birthed the organization – fierceness, clarity of vision, and a true understanding of the power of family voice.

 *   *   *   *   *   *    *   *   *

Scott Bryant-Comstock
President & CEO
Children’s Mental Health Network

Scroll to the bottom of the page to leave a comment