What a pleasure it is to finally have arrived at AMCHP in mid-March! Departing from one extraordinary organization (NACCHO) with its critical focus on local governmental public health and getting orienting to another vibrant, thriving organization (AMCHP) with its focus on a target population has truly been a transition within a transition. And, although the evolution will continue for me for some time, the work of AMCHP forges ahead.
It's been a busy and productive spring as our leadership, members, partners, staff and others provide initial finishing touches to the MCH 3.0 Transformation. In a short time, I have witnessed the incredible passion and involvement of maternal and child health leaders, including active participation from families and parents of children and youth with special health care needs (CYSHCN), as we shape our future through the Title V transformation. It bears repeating that the essential inputs that you – the very champions of moms, kids, and families of CYSHCN – have provided would not have been possible without the openness and willingness of Dr. Lu and the Maternal and Child Health Bureau (MCHB) to commit to a repeated process of engagement with AMCHP. Please join me in acknowledging and thanking them for that ongoing commitment. The work is not done and we should remain diligent in our efforts to continue to ensure the transformation's success. We are moving now into new phases of MCH 3.0 Transformation and your careful review of the upcoming guidance due out in June, your thoughtful and constructive suggestions during the public comment period, and further consideration of what kinds of technical and other assistance will benefit you as we move toward implementation, will be crucial still. We will all need to be poised to move on quickly after the public comment period and prepare ourselves for the implementation phases and, ultimately, for success.
It's very fortuitous that this issue of Pulse should focus on children and youth with special health care needs. One of the many new joys that I've experienced in my first three months with AMCHP has been learning more about how this organization partners with families, including those families with children and youth with special health care needs. I'm fascinated by the partnership. Having been involved with a variety of health-related nonprofits for 25 years, I can honestly say that the incorporation of families, who are the true consumers and ultimate navigators of health care systems and understand much more about it than perhaps anyone, unfortunately is not very common at all. AMCHP, may in fact, be one of the only national organizations in our field that also dedicates a full-time staff member to family engagement alone. It's been extremely gratifying to know that AMCHP was (and still is) truly on the forefront of this partnership that speaks so clearly to our vision of healthy children and healthy families living in healthy communities.
There are certain things that you should know about how families of children and youth with special health care needs have enriched this organization over time.
- Since 1996, the Family and Youth Leadership Committee, including families of CYSHCN, has been providing leadership, advice, expert guidance, and information to AMCHP to advance partnership opportunities for families and to develop and implement effective programs, strategies and policies at local, state, and national levels. Take time to understand the importance of their efforts by visiting amchp.org/programsandtopics/family-engagement/Pages/default.aspx.
- Pursuant to my earlier comments about MCH 3.0, a special Family/Consumer Engagement Work Group was formed earlier this year to provide specific recommendations regarding strengthening family/consumer partnerships and to ensure that this partnership is intentional, collaborative and respectful in the new Title V MCH Services Block Grant. I commend the work group on its final recommendations to the Bureau that include concepts of broadened family and consumer partnerships, prioritizing the partnership in Title V programs and using it to strategically inform national performance measures, structure and process measures; and improved reporting of partnerships. This informed response is invaluable to the feedback and to improving Dr. Lu's work around the final draft guidance.
- Family Delegates are voting members of AMCHP for a good reason. We recognize the value their input and unique perspective provides in guiding the current activities and future of this organization. Family Delegates are one of five of the designated representatives from each member state and bring the family voice to AMCHP and its programs.
- At least one family member sits on each AMCHP committee, providing active participation and feedback, sharing in the work of the committee and bringing the voice and perspective of the family across the full spectrum of AMCHP work including best practices, emerging issues, legislative & health care finance, and workforce issues.
- There are two family representatives on the AMCHP Board of Directors. Including representation at the highest level of governance was purposeful and intentional, bringing much desired perspective to the overall leadership of the organization. The inclusion of board roles for families also is designed to provide leadership development to family representatives and exposure for them among other leaders in the organization.
If you would like more information about any of these initiatives, please contact me at firstname.lastname@example.org or our program manager for family engagement and leadership development, Michelle Jarvis, at email@example.com. If you are a family member, please consider getting involved in this work by responding to the call for committee members later this year. Enjoy this issue of Pulse!