Real Life Stories

Family Involvement in Maternal and Child Health

By Rylin Rodgers
Training Director, Family Leadership Coordinator, Riley Child Development Center and Board of Directors, Family Voices Indiana

When I first entered the maternal and child health (MCH) world, I struggled to find some simple language to describe to my children and others what I was doing when I went out. At that point, I was not going to work, these were all volunteer efforts. They were also very diverse. I was going to committee meetings, conducting or receiving training, giving testimony or helping other families. The descriptor I settled on was that I was "off to save the world." That frame may appear a bit ambitious but, for me, it was broad enough to include the wide range of my activities and to satisfy my children as to why I was leaving them to do what I was. I was going to impact systems to make things better for the families who were coming after ours. I, like many of my fellow family leaders, came to my roles not via a formal career path, but rather as a result of personal experiences that ignited a passion to make things better. Within MCH, I have opportunities to translate my passions into meaningful impact. Over the past three years, my path has included the experience of being an AMCHP Family Scholar and now a Family Scholar Mentor. Because family leadership is an unconventional career path it is important to appreciate efforts, such as the Family Scholars Program (FSP) that recognize its validity, support its development and strengthen the infrastructure within MCH. It is, in my view, a tremendous statement on the inclusive view of family leadership, that supporting development of family leaders by AMCHP happens within the existing structure of the MCH leadership competencies, instead of under a separate framework, ensuring shared language and experience as equal partners.

When I explored applying to the FSP, I was unsure if it was a good fit. I had already participated in a variety of leadership trainings, was connected to a network of amazing mentors, and had translated my skills and experiences into a paid part-time role. My schedule – both personal and professional – was full. But, my vision of "saving the world" led me to apply anyway. Now, two years later, I can clearly see the difference participation in the program has made both for me personally and for the "greater good" I hope to serve. The application process provided a platform for me to engage with the MCH leadership in my state. At the time of the application, we had a brand new director and the requirement for a letter of support was a great, fast track to an ice breaker. Beyond that initial communication, the program provided continual points of conversation and dialogue with my state MCH partners, strengthening the role of families in all of the state programs. The FSP ensured that time for my personal leadership development was set aside; participating brought this to the top of the "to-do" list. The inclusion in a cohort of family leaders from throughout the country who were engaged in the same process provided me a set of colleagues with a shared language and diverse experiences translating ideas into practice in any number of systems. This brain trust provided, and continues to provide, not only support but tremendous technical assistance as I encounter new challenges in expanding family leadership. In a world where credentials matter, the distinction of first being an AMCHP Family Scholar and now a Family Mentor holds a place of some significance on my vitae. As is so often the case, the greatest outcomes have come via relationships. My ever-expanding network of MCH connections continually provides new and exciting opportunities; from quick e-mail and phone exchanges around issues, to speaking and training engagements, the extended network of colleges, partners and mentors continues to assure my greater impact. Now more than ever, I can tell my children that I am part of a much bigger network of family leaders, working every day to continue saving the world, a little at a time.

Family Leadership: AMCHP Family Scholar Program

Heather MillirenBy Heather Milliren
Skagit County and NW Washington Coordinator for Washington State Parent to Parent, 2008 AMCHP Family Scholar and 2010-11 AMCHP Family Mentor

As the parent of three young children, two of whom have special health care needs, family leadership is second nature for me. Advocating for my family in medical and education/community arenas is a necessity. Utilizing the skills gained through these advocacy experiences and a passion for serving other families in similar situations launched me into a second career. Prior to starting a family, I worked as an elementary school teacher. Once my first child was born and subsequently diagnosed with a severe-to-profound hearing loss, my career path changed course. As a way of giving back to a caring community, I was hired as a countywide family support coordinator for Washington State Parent to Parent. This position allows me the opportunity to work at the grassroots and regional level for providing support services, resources, educational opportunities and mentorships to other families raising children with special health care needs.

After several years of working at the local level and as a Washington State Early Hearing Loss Detection, Diagnosis and Intervention parent consultant/spokesperson, I was asked to apply for the AMCHP FSP. Flattered that my leadership potential was recognized by Title V employees, I took the plunge into a new level of leadership – one that opened the door beyond the four corners of Washington State. I was selected as a 2008 Family Scholar and headed to Washington D.C. for the annual conference. As a lifelong learner, I registered for as many sessions as possible and soaked up a variety of information and skills to bring back to my state. In addition, I was able to accompany my Title V team to Capitol Hill for congressional appointments by offering the "real life story" of my family’s journey raising children with special needs.

I left Washington D.C. forever changed. My passion remains with serving families of children with special health care needs on the local level, but also to be their voice at the state and federal levels. The AMCHP annual conference was an eye-opening experience for me. Not only did I meet other phenomenal family leaders, but also Title V champions who make it their job to work on behalf of all women and children in the United States and territories. I was overwhelmingly impressed with the level of commitment each professional had within themselves. I gleaned new strategies, approaches and viewpoints to better serve the families in my population. I also came home with the greater knowledge of just how far we have come as a country due to Title V. I will never forget Betsy Anderson’s presentation on the history of Title V. Especially, the fact that animals had more rights than women and children prior to the enactment of this essential entitlement.

My journey as a family leader continues to evolve. In 2010, AMCHP selected me as one of its three family mentors for the FSP. This gave me the opportunity to welcome and nurture additional family leaders from across the country. Under the guidance of Librada Estrada, AMCHP Associate Director of Workforce & Leadership Development and Family Involvement, the FSP has morphed into a richer and more comprehensive program. Family scholars and mentors are now expected to participate beyond attending the annual conference. They are involved on three levels: knowledge and practice of MCH Leadership Competencies through a 12 month curriculum and ongoing mentor relationship; individual leadership development through optional personal coaching and Strength Based Leadership assessments; and attendance at the AMCHP annual conference in a more impactful role by submitting abstracts for presentations and poster sessions, as well as scheduling legislative visits. I applaud AMCHP’s recognition of the importance of family leadership involvement in Title V and encourage each of you to consider nominating other family leaders for the FSP.

Being a Family Leader at AMCHP

By Michelle Jarvis Michelle Jarvis
Program Manager for Family Involvement, AMCHP

Me – a leader? No way. I was the girl who lacked self-confidence and was shy. The one who worried what everyone else thought. The one who couldn’t stand up in a small class of my friends to give a book report in school. Leadership had nothing to do with me. Or so I thought.

Although I didn’t know it at the time, my journey as a family leader started when my son was born in 1999. Shortly before his third birthday, he was diagnosed with autism. Since that time he has been given a variety of additional and co-morbid diagnoses. Though he is an incredibly complicated kid, deceivingly so, only complicates things further. It actually wasn’t his special needs per se that were the catalyst for my leadership. Rather, it was the broken system of laws, understanding, funding, and supports and services that threatened to swallow my child. It is amazing what we find within ourselves when someone we love is in jeopardy, and where that can take us.

I found myself in an especially contentious situation with our school district. I had to advocate hard for my son and fight to get him what he needed. I had to find my voice for him, learn about his needs, understand IDEA and so on. It felt like special education boot camp! It was hard, mentally, emotionally draining, and discouraging. At the same time, I had a little girl to think about too. During this time in my life, she went from an 18 month old baby to a three-year-old toddler and, sadly, I have no memories of it happening.

One of my saving graces was connecting with some incredibly knowledgeable and skilled providers and parents who wanted to do the right things for kids and families. They really got it and they helped me get it too. I spent a lot of time asking questions and they spent a lot of time answering them. Not only were some of these folks angels for my son, they were mentors for me. An important realization that I came away with is that to really advocate and make systemic change, you have to shoot higher. While education and advocacy are necessary at a local level, I didn’t want to just try to get the school on board. I also wanted a voice at the state level.

I completed a leadership program and became the president of a statewide autism advocacy organization. From there, I seemed to come upon one opportunity after another. A few years later, I found myself having grown into an important state stakeholder sitting at the table alongside others, such as the Department of Education, Special Medical Services, the Bureau of Developmental Services and more. I also found myself serving on national committees and having a voice for both state organizations and families. Ultimately, this led me to AMCHP.

I came to AMCHP in March of this year. I had been looking to relocate to the Washington, D.C. area, but it was the interview process and staff at AMCHP that made me certain I was making the right choice. I recall being excited by the sincerity expressed not just in their desire to include families, but to include them meaningfully. And, to help others do the same. I felt instantly valued for the unique perspective I brought as a parent and for the skills I had developed as a professional through my prior leadership and advocacy accomplishments.

Since beginning in my role as Program Manager for Family Involvement, I have not been disappointed. I was asked to take the lead with the Family Scholars Program and to use my experience as a family leader to help revise and enhance the program. I also am looked to as a resource on autism related work, and involving families in advocacy, by other AMCHP staff. Professionally, I have already grown by broadening my focus from autism to all children and youth with special health care needs, and from focusing primarily at the state level to working more in depth with a national organization. AMCHP recognizes and respects my unique needs as a family member and we work together to make sure the relationship is positive and successful for both of us. I continue to be impressed by all AMCHP is doing to involve families through initiatives like the Family Delegates, the Family & Youth Leadership Committee, as well as the Family Scholars Program.

I look forward to growing in my position with AMCHP and being a part of moving family involvement forward. I will always strive to do what I can to make the systems of care better and help other family members to do the same. While I recognize my role as a family leader, and respect the responsibilities that come with that, in my heart I am still just a mom who loves my kids.