Who will speak for families? Time for the Federation to rekindle its own flame

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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.

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:

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.

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scott

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


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Comments

  1. Patti Derr's avatar
    Patti Derr
    | Permalink
    I watch our 25 year old vision and values that was our foundation become a mere ghost. What we are blindly accepting is not acceptable ...... Where is the national training for families and youth in Wraparound? There is nothing promoting consistency nor a process for constructive comment. I hear FSP's say things like "my boss won't let me or I can't tell the family ... ". What happened to our push for contracting with family run organizations rather than the fox OWNING the henhouse. All too often, our voices have been sold, co-opted and weakened by subpar certifications that have no more value than paper and ink.(Not speaking of all but most often those that are not family operated). FYI, Hiring a parent does not equal family-driven.

    I've grown weary of speakers at OUR conference who know little of our organization. I want to see keynotes from Karl and Ira! What they envisioned and passionate ideas for getting us back on track! With follow-up sessions (for those elders that sit in the hallway) to bring our voices back and stronger than ever!

    We don't need Rockstars, we need sound, passionate, dedicated family leaders who understand that each family is important. We are not their judge but their partner at whatever capacity.

    We must design our message with fervent intent. Bring back families as Allies and Scott's training, for we have fallen way too far from the Path and we have shorted those families who have come behind us.
  2. Cherie Cruz's avatar
    Cherie Cruz
    | Permalink
    I want to thank you Scott for providing your thoughts and insights, great read! As a "current parent" of children with emotional and behavioral health challenges I find that many of the voices are voices of the past. Parents or caregivers from literally the 80's. When you ask where that fire is, I say it is also here in those parents living with this today and everyday currently struggling. I have seen one area that the family run orgs struggle with, particularly in my own state, that is succession. Succession, Succession, Succession. Just as transparency is so important to families, building the next family and youth leaders, and cultivating that voice is equally important. How does one get excited or reinvigorated when the same leaders who started the movement from the 80's are telling the same stories of their struggles with the supports and services they had needed to bring about change for the families of today? I personally am grateful for them paving the way and sharing their stories which helped to provide strength and hope in others including myself. History is so important, what is also important is making way for new family voices, cultivating those voices and supporting them into leadership and advocacy roles. There are strength in numbers, please grow our numbers by allowing others the opportunity to share our stories and grow as leaders along side the leaders of the movement from the 80's and 90's.

    In strategic planning processes look at the current family organization structures and ask certain questions of the leadership makeup, are these the same leaders and voices from 10, 20, 30 years ago? Are there opportunities for current families to share their stories and advocate in a variety of ways on a local, state or federal level and how is the federation supporting this or will plan too? I feel this is an area the Federation needs to pay attention to, not only within the Federation but throughout the state and local chapters.

    As a parent and true believer in the family and youth driven model, it is who I am, I am afraid that we may not have the leadership in place to grow the new generation of family voices and leaders necessary to take this movement forward. As a parent currently struggling I am up for the challenge and I know many other families who are my peers who are also up for the challenge. I am hopeful that we do move forward, but if we do not address some of the leadership challenges and be all inclusive we may not prevail.
  3. Lisa Lambert's avatar
    Lisa Lambert
    | Permalink
    Those of us who are leading the advocacy work for children, youth and families in the states and communities NEED the National Federation to waste no time in stepping up. Its board is the keeper of the mission and can be the engine behind the new director, if they only will. There is work for everyone to do -- and quickly!

    It's hard being an advocacy organization but there is nothing like it. You have to be constantly in touch with your constituency -- families -- and never let any of your other activities eclipse your advocacy. While training, research and technical assistance are all valuable, they don't reform the children's system to make it better and better for children, youth and families. I know this well as the director of the family organization here in Massachusetts.

    We are in a time of great change with Congress writing bills focused on mental health and new ways of delivering care (integrated care for instance) springing up. Unless the message of family-driven care and partnering with families is immediate and strong, we will scramble for a place instead of being seen as experts. So glad you wrote this!
  4. Donna Ewing Marto's avatar
    Donna Ewing Marto
    | Permalink
    Thank you Scott for articulating what many members of the National Federation of families for children's mental health have been asking. We have been singing about what's going on and quietly asking ourselves who will amplify the voice of children youth and their families and more importantly for CHILDREN'S mental health.
    Hopefully you have set the fire that will bring us back the fireworks and we can stop singing about what's going on.
  5. Emmett J Dennis III's avatar
    Emmett J Dennis III
    | Permalink
    Aloha everyone from Hawai'i... Hoping everyone is doing as well as possible and staying comfortable.

    While I have known Scott for many years dating back to Hawaii Families as Allies hosting a National Federation Conference, this is by far one of, if not the best piece of writing that I have read from him…

    This is very thought provoking and just reiterates what many have been asking for far too many years… Where is the leadership to protect the family voice? When was the tipping point of drifting away from “feed the field” with advocacy and support to “feed the national operational appetite” with rhetoric and dismissive attitudes toward the field? When did leadership shift away from serving the needs of all, to self-preservation of entitlement.

    While the above questions can be easily dismissed, and may have been during this apparent lull of non-communication from any leadership capacity of the National Federation that was not “Conference-driven” regarding the obvious restructuring efforts to re-group, re-focus, and finally remove the bad taste in the air. I am more concerned as many are, about the possible lack of connection to the community of supporters that this too shall pass and we, the National Federation of Families for Children’s Mental Health , and the families to which we “serve and advocate on behalf”, will be stronger as a result…. I can only hope and pray that the Conference will be the bridge to the new land of opportunities of growth and stability, and not perhaps unintentionally, business as usual and hope not to lose too much money while pretending to put on a high value event…

    Just my two cents as a former staff member of 6 years and former board member of 2 years.
  6. Lori Reynolds's avatar
    Lori Reynolds
    | Permalink
    THANK YOU, Scott for putting it out there what everyone of us has been talking about! We need the Federation back up and running sooner rather than later. So many things have changed and in many states children's Mental Health is way behind the times. Some say it's the states fault because states have lost federal funding, changed leadership, or just plain focused on anything but kids and families but in my mind that's not the issue the issue is the Federation forgot that they were a family run, family driven organization and NOW we all have the opportunity to take back our voice, our organization and become the national leader once again! Will it be hard...we all know what hard work is and we all love the work we do. So, let's get to it....lets get new leadership in and let go those who think they know more than families, kiddos and youth! I for one am excited for this opportunity...Children's Mental Health Does Matter and we need to make sure our voices are heard!
  7. Maryann D. Mason's avatar
    Maryann D. Mason
    | Permalink
    I look forward to the re-energizing of an important face and voice of parents. Having had the PA state chapter (then Parents Involved Network, PIN) assist me almost 30 years ago was a blessing I have never forgotten.
    Having thought being a parent was a criteria to be employed by any chapter of FFCMH, I understand to have a diverse group of board members can enhance the brainstorming and managing of priorities brought to the FFCMH by parents across the United States.
    I have not lost hope - and appreciated Marian involving me in developing and presenting a webinar several years ago regarding the many roles parents and other primary caregivers can be. We all have value, areas of expertise, and together we can persevere!
  8. Marion L. Mealing's avatar
    Marion L. Mealing
    | Permalink
    I have read many comments and I agree with most. It's very nice that the GPSN is offering volunteer to help with the conference this year, what a great gesture. My question was posed way before getting laid off, when will the National Federation of Families find a real family member to be the organization's real leader? The current Interim Executive Director is not by any Federation definition that I've read a family member. If you want to rebuild this organization you'll need to start from the top down. There needs to be a family member and not a professional who has or have raised a child with emotional, behavior or mental health disorders. The problem has always been a lack of transparency. If you dare asked any questions you were punished. The environment became to toxic to bare. To bring this organization back you will first need a real family member who can be a mover and shaker that knows people outside of the organization, and the Board of Directors needs to be dismissed. New Board members are needed and they too need to be family members who have raised children with emotional, behavior, or mental health disorders. There need to be board members who can read financial charts and ask questions when they need to. This board has been hoodwinked and bamboozled for so long now, I personally think they cannot get the job done. You ask no questions you get no answers or you're lied too. Shameful...
  9. Lisa Conlan's avatar
    Lisa Conlan
    | Permalink
    I had the great opportunity to have our organization be a chapter organiation of the FFCMH and was able to turn to Federation for my own parental support and to seek guidance in our state advocacy needs. For seven years I had the fortunate opportunity to serve on the staff of FFCMH and had the humbling opportunity to help organize and support families in their communities and nationally to have a voice. I remember when we were solid and all working together strategically to be a strong collective voice. There is a need for us all to work together old and new leaders in the movement and to ensure that their is a collective voice not just the voice a of few. I believe there is a need for us to stand together again to be an active voice as families and states are facing even more servious challenges today as the seek to meet their basic needs, health, behavioral health, child welfare, and juvenile services. Makes me sad to think that it is only the responsability of this organization or that organization- if we are working towards the same cause then we should be able to work together to get the word out to families to participate and organize together despite our funding and goals of individual organizations. Let's organize together and the Federation of Families conference is a venue that we can get this message out and continue to do this work important work together!
  10. Sue Smith's avatar
    Sue Smith
    | Permalink
    Many of us have worked the last 30 years to birth, build, support and ultimately to enjoy the Federation of Families for Children's Mental Health. The Federation does not belong to the staff who are working very hard to rebuild nor does it belong to the Board of Directors who are also working very hard. It belongs to US the families. I have great respect and admiration for all of the organizations Scott mentioned but do not believe they would fill the void if the Federation did not exist. Thank you Scott for calling the question. From the very beginning you have been one of the strongest supporters and a true believer in the family voice and later the youth voice.
    Georgia Parent Support Network is sending 4 staff to help with the Federation Conference. The Federation belongs to all of us. I urge each of you to get involved. Your strength, support, voice and involvement is desperately needed.
    Sue Smith, Georgia Parent Support Network.
  11. Marie Niarhos's avatar
    Marie Niarhos
    | Permalink
    Thank you all for speaking up and out for an organization that should be speaking up and out for our families, especially our children.
    Before leaving my work and since leaving I also have been sad about the lack of advocacy and genuine interest by some in the real work. Working for the NF went from an opportunity to advocate and educate with dedicated staff to a time of frustration and toxic interactions with some staff.
    I hope Scott's words will put a fire under some who can get the NF going again. There is still so much to do.
  12. Tricia's avatar
    Tricia
    | Permalink
    Scott - I have been very active in children's mental health for a little over a year. And had never heard of the National Federation until today when I read your editorial. Perhaps that is all you need to know about the State of the Federation. Actually, I have been active in children's mental health since 2000 when my daughter and then later my son were both diagnosed. When I couldn't find solutions...I decided to start my own. Check out my prototype web site. www.atwisend.org.

    Thanks for your weekly updates.
  13. Kurt Moore's avatar
    Kurt Moore
    | Permalink
    Thank you for speaking up, Scott! Many of us have been scratching our heads for the past year, wondering what happened to the once-fierce Federation. As we have seen, over and over, the family voice gets lost in huge systems unless it remains loud and clear.
  14. Shannon CrossBear's avatar
    Shannon CrossBear
    | Permalink
    Yes. The Federation, its original mission and purpose continues to be a void that is not met by any other organization. I was honored to be part of the national federation and then, I was not. When noted and articulated that the emperor had no clothes, that NFFCMH was not in alignment with its expressed vision and mission, there were repercussions. Today is a new day, with new opportunities to make sure that beyond the banners and buildings, beyond budgets and politics, the people are served. I sit here in my rural and remote location doing what I do because of that original mission, because of the power of family to family connection because of Barbara, Mary and Marion and Elaine and Trina and Pat and every one of the hundreds of families who have understood and fought with me to keep me and my children in a place where we had hope of a brighter future. Every day I encounter families who need to know someone is advocating for putting things in place so that we can insure possibilities for health and wellness.
  15. Muriel Jones's avatar
    Muriel Jones
    | Permalink
    Good morning, Scott -- Thank you for "keeping it real". As the Executive Director of Federation of Families of Central Florida Inc., I am concerned about the status of National Federation. I totally agree that National Federation's flame must be rekindled. I believe that the decline in interest of National Federation is that local chapters are going about their business doing what they are called to do ... ADVOCATE for children, youth and their families. Families are in crisis. No distractions -- we have to stay focused. I pray that the interim director get the needed support and guidance to navigate through this transition successfully and get National Federation back on course. Again, thank you, Scott, for "keeping it real".
  16. Marion L. Mealing's avatar
    Marion L. Mealing
    | Permalink
    Dear CMHN Director, thank you for saying what many of us were afraid to say while being employed with the National Federation of Families. I was let go after being employed for 19 years at a very low pay rate because I believed in the founding members mission and vision that did true advocacy on behalf of children, youth and their families. Some how we got away from the true mission and vision and those in charge who could have made important changes sat around and did nothing. I will give people like Barbara Huff the very first director her props for 1. Knowing how to run a business; 2. Showing respect to all employees, with or without a degree, which was the least important; being family first was the most driving force throughout the organization; 3. Hiring my dear friend Mary Telesford who knew how to work effectively with our urban and rural families; 4.Trina W. Osher who was on point with ongoing policy related issues related to children's mental health issues; 5. and Elaine Slaton who was not only a very good trainer out in the field but an excellent grant writer all in house. 6. I was the Administrative Assistant for many years, I helped run the conference registration as well. There were many professionals who have come and gone including myself. The National Board of Directors sat around for a very long without holding the new Executive Director accountable for the lack of leadership that was very obviously to me, staff and people outside of the organization. I thank you for the opportunity to comment. Working under the new Federation was a very toxic and unprofessional environment that did not advocate on behalf of children, youth or their families.
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