Whatever happened to the Federation's role as David in the biblical tale of David and Goliath?

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Morning Zen Guest Blog Post - Dixie Jordan ~

When someone shines a spotlight on a clandestine affair, does our silence become voyeurism? Are we sideline participants - part of a newly created menage a trois that relies on all partners to support the new status quo? Do we then all share equally in the blame for what has become of the Federation of Families for Children's Mental Health?

I watched the indiscreet descent of our Federation from a robust, raw, angry, intense and utterly dedicated culturally pluralistic gathering of parents and family members to a meeting of largely "professionalized parents" who, despite their many strengths and skills have been molded to become part of the system itself. This is not what any of us envisioned!

Trepidation over continuing funding for the Federation led us onto a dance floor where we not only had to follow the lead of our funders, but pretend that we liked it.

Whatever happened to our role as David in the biblical tale of David and Goliath? We were small and without great weaponry, but we had right on our side and on the job learning about how to bring down a non-system of services for our children. Once we were expected to become more "professionalized," we were assigned a new and potentially equally important role - to carve up the beast from the inside. It was to be our responsibility to identify gaps in services and to build support for all families to place demands on the system so that it could become more responsive. Of course we were to be unfettered, and our voices, however strident, were to be honored. Is that not why parents were hired in the first place? There is an enormous disconnect between our one-time expectations and the reality of today.

Who do we blame? Funders, who knew from the outset that who controls the money controls those who receive it? The Federation, that spent countless hours chasing the dime, redefining their expectations of and for families and handholding with the bureaucracy to sustain itself? Or ourselves, that we believed the exhortations that becoming part of an impersonal and largely intractable service system whose movement was as slow as molasses in January was the only way that the voices of parents would be heard?

When I expressed disagreement with the direction of the Federation, not because I felt that "training" parents was a bad idea, but because I feared that ultimately, a paycheck has immense power over one's voice, the notion was pooh-poohed by both Federation leadership and by funders. I am hardly surprised but greatly dismayed by what has become of an organization to which I dedicated years of my life and all of my trust. Something MUST be done so that families once again receive the support and education they need to ensure the best services for their child.

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dixieDixie Jordan is one of the nations foremost experts in understanding the reauthorization of the Individuals with Disabilities Education Act (IDEA). She has developed a practical training that offers specific techniques for developing positive Individualized Education Plans for children and youth with mental health needs that is used throughout the United States. Dixie has been involved with the National Federation for over twenty years, having served on the Board of Directors as well as having provided countless hours of individualized consultation on IDEA for parents attending the annual national conference.

Comments

  1. Steve Kossor's avatar
    Steve Kossor
    | Permalink
    I was hoping to be invited back to the NFF conference this year so that I could bring my message of hope to parents regarding EPSDT funding for their child's mental health treatment. Perhaps I'll be invited back again sometime in the future. My willingness to contribute to the work of the NFF remains strong; let me know how I can help. Best wishes for your future; parents need to know how to pay for treatment (without funding, it's never going to be delivered). I can help solve that problem.
  2. Patty Butler's avatar
    Patty Butler
    | Permalink
    I was part of the early years with you Dixie in Minnesota and I so saw it happen and I totally agree with you.
  3. Sue E. Burts's avatar
    Sue E. Burts
    | Permalink
    Exactly why I let my peer support CERT go. Glad I wasn't the only one who saw this happen. A shame.
  4. Lisa Lambert's avatar
    Lisa Lambert
    | Permalink
    Dixie, I am so glad you wrote this.

    Like many family-run organizations, representing family voice in my state, we say that we educate, collaborate, support and advocate. We can support families both as parents within organizations or as family-run organizations that are independent. The same with education. But advocacy is difficult when you don't have unrestricted funding especially when your message is not the status quo or even unpopular. And collaboration works best when the parties are considered equals, which is hard to achieve from "the inside."

    I agree with Sue that the Federation should be "We the families" sort of like "we the people." It can belong to all of us. We have a vested interest in its future.

    But that will require a clear vision and a transparent set of steps from the leadership (board and management). That's the way we build integrity.
  5. Sue Smith's avatar
    Sue Smith
    | Permalink
    Dixie,

    As you know, I have also spent countless hours over many years believing in and supporting the Federation. I share your observations and understand how we arrived where "we" (the Federation) are. It is sad, but like all stories of survivorship, I believe the Federation will survive. We are survivors.

    I am not sure I understand the term "Professional Parent." If we are successful in our advocacy for our family and others, we gain knowledge of how to navigate systems and situations. Do we, then, become "Professional Parents?" I am no less a parent; I have just been successful in my search for knowledge. Most of the parents and other family members gladly share their knowledge with those in need.

    As for the direction of the Federation, we started in the basement, rose to the heights, and are now in the process of rebuilding. As organizational literature states: storming, norming, and preforming. I am neither staff nor board member of the Federation. However I strongly believe in our work. It would be a shame if we do not all band together to strengthen our great organization. I urge each and every person reading this message to support the Federation.

    Thanks,

    Sue Smith
    Georgia Parent Support Network, Inc.
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