Emily (00:03.072)

Welcome to the inaugural episode of the PIC Families Voices podcast. I’m your host, Emily. In this podcast, you’ll hear from Michelle Lewis and Sylvia Pelletier from the Parent Information Center and New Hampshire Family Voices about the importance of family engagement and family voice. This is the center of what we do.

Michelle is the Executive Director of the Parent Information Center. She has worked with state systems, early childhood programs, school districts and families for more than 25 years. Michelle is experienced in working at the state and local level, promoting and supporting family voice at all levels of the systems. She brings her knowledge and passion for families and systems to all her work. She has been with the Parent Information Center since 2002 and in the role of Executive Director for over 10 years.

Sylvia is the Director at New Hampshire Family Voices. She has spent the last 30 years in the nonprofit world, working to support and to inform families, as well as to elevate youth and family experiences to shape systems so that the services provided meet the needs of youth and families. She has been at New Hampshire Family Voices since 1999 and in the Director role for nearly two years. Michelle, please share with us about the Parent Information Center and New Hampshire Family Voices, their mission and why we are necessary.

Michelle Lewis (01:32.987)

Thanks, Emily. For over 40 years, the Parent Information Center and New Hampshire Family Voices have been helping families understand the systems and programs they are a part of and how to navigate them to make informed decisions that enhance each child’s development and well-being. Our work focuses on supporting families, youth, and professionals to work together for the success of the child and for the systems that we work with.

We build the capacity of families to work in partnership with educators, community agencies, healthcare providers, and others to improve those outcomes. We know that engagement improves outcomes for youth and families across systems. It matters. It’s also important for me to say that it’s not just about a policy. This is personal for us here at the Parent Information Center and New Hampshire Family Voices, and we’ll talk more about that as we go through this podcast.

Emily (02:39.168)

Thank you. Michelle, what are the origins of PIC and NHFV and how is family voice relevant?

Michelle Lewis (02:47.823)

I started to say this a little bit in our last question, but our roots are grounded in the belief in the importance of family voice and now youth voice. We exist because of families. Families came together to address the needs of their families and the communities of families impacted by disabilities and special healthcare needs. The need for support and systems navigation in healthcare, healthcare financing, community-based systems, as well as school systems, and a network was born. And family leaders made this happen, and that’s what keeps it in existence till this day. It was because of family advocacy that both PIC and NH Family Voices were founded, both to not only elevate family voice and engagement at a personal level at a child level, but also at that systems level because we know the importance again of both family voice as well as youth voice. From the beginning to current day, we have demonstrated the ability to identify and respond to the changing needs of children and families in New Hampshire.

Our services have family voice at the center. We also have youth voice at the center from some of our youth work and we’re really dedicated to that. This has really helped systems that we work with to remain relevant and responsive because we cannot be either of those things without knowing what is going on in the community. Our staff and ourselves, we’re out in the community. Working at the local level as well as the state level, ensuring that family voice and youth voice are there.

Emily (04:51.308)

Thank you. Sylvia, how does PIC and NHFV define family voice?

Sylvia (04:57.437)

Family voice really refers to the concept of involving families as equal partners in decision-making for their own needs as well as in work to impact the design of programs and systems to ensure that diverse perspectives and lived experiences inform them. I think one of the things we talk about a lot, it’s just not easy work. It doesn’t just happen. It requires a commitment to and a belief in the value of family voice.

Families need professionals to demonstrate that they value family voice beyond simply seeking our perspectives. Families don’t stay engaged if they sense it’s a one-off or check-the-box activity. Families want to know that their time was valued. They want to know that they were truly listened to. And they want to see how that information was used to improve programs and policies in some way, shape or form. I think it’s also really important to note that not all families come to the table with comfort and confidence, but they’re all passionate about their child and their family. They all bring a perspective that can help us to make systems better. And it’s on those of us who found our voice to help them to feel confident in using theirs.

Emily (06:10.668)

Thank you. Sylvia, how does PIC and NHFV lead by example regarding family and youth engagement?

Sylvia (06:17.793)

I think Michelle’s already kind of touched on the fact that at PIC and New Hampshire Family Voices, we know the power of it because we live it. Over half of our board of directors are parents of children with disabilities and special health care needs. The majority of our staff are parents who’ve been through the challenges of having a child that either struggles in school or has a medical condition, or in some way we have a life experience that has led us to this work.

We co-facilitate advisory councils with family members, providing them the training and coaching so they’re able to use their voice. We also help families to work in partnership with their school districts through the development of family school partnership groups. Engaging families to use their voice does not mean that everybody agrees, however. It means that all voices are brought to the table and that hear various perspectives and improve outcomes for all families and their children.

Sylvia (07:12.605)

As specific examples, on the family voices side, we’ve worked on a lot of quality improvement projects with medical staff, medical projects, medical offices, and in those projects, we’ve always asked the practice to identify a parent partner. Then we’ve provided the mentorship to those partners at the level of support that that family member might need for full participation so that they feel confident in working at that table, then we maintain engagement.

Sylvia (07:40.524)

I think it’s really interesting that one of our family partners that we engaged almost two decades ago, I think at this point at the practice level, is now on the PIC board. And her daughter, who was an infant at the time that I first met this mom, is now on the youth council. I think PIC and Family Voices have demonstrated that we believe in investing in families because it improves their lives and it also improves our work and the system as a whole.

In our healthcare transition work, we’ve engaged often with our youth council. As Michelle said, it’s become much more important in recent years to really have youth voice at the center of the work as well. So, we’ve worked with our youth council and with family members on that project’s advisory group, and their perspectives have shaped our trainings that we develop, the materials we develop, and the project as a whole. I think really interesting, we’ve been doing the work in transition.

There was a recommendation on the National Center that we started to do that work at the age of 12. At the age of 12, and our youth members said, oh, no, don’t talk to us about health care transition at 12. We don’t even want to talk about that till 14. And we don’t start until they’re 14 in this project as a result of that. Multiple aspects of our work have been directly shaped by youth and family members’ perspectives from when we start discussing the transition processes I just discussed, to the importance of engaging all families in discussion and planning.

Emily (09:10.508)

That’s great. Thank you, Sylvia. This may be a good time to share with our audience what brought each of you to this work and what has kept you in it. Michelle, can we start with you and then we’ll go on to Sylvia.

Michelle Lewis (09:22.181)

Sure. Thanks, Emily. My passion for this work really was unexpected. Our daughter, we had a traumatic birth that not only made me a parent, but also really changed the course of my career. I certainly had been working with families prior to her birth, but having my daughter kind of ignited a passion in me about the importance of family voice and partnership.

So, my husband and I were not only new parents, but we were propelled into the world of disability. We were suddenly navigating systems. We had to learn a whole new language. We had to trust and rely on others to assist us in her learning and development. I was experiencing the systems for both a family and personal side, and also working to understand and support her while struggling with this roller coaster of emotions. It was this personal perspective that really has validated and shaped my belief and work with other families and professionals. My family’s journey and experience have taught us the importance of having families, making sure that they have the knowledge, skills, and confidence to work with medical providers, early intervention, community programs, and the school district. And I really have personally seen the difference, and it’s why I’ve stayed in this work. I’ve seen the difference that family school community partnerships make. My daughter’s now a strong young woman. She advocates for her own needs. She shares her challenges and her strengths. And we taught her by example.

With the support of the families and professionals who taught us along the way. And so, I remain committed to improving outcomes for children with disabilities and special healthcare needs and their families by staying in this work and supporting systems improvement and family voice. So again, this really is personal for me, and I have seen the power of it. I’ve seen the power at all levels of the system.

Because as Sylvia said earlier, we know it works. We know that by centralizing the family and the youth voice, that it works. Sylvia?

Sylvia (11:57.435)

Thanks, Michelle, I think so much of what Michelle just shared resonates with me as well. Like Michelle, my experiences in my own family brought me to this table. I often say the experiences of families today keep me here, but I recognize that it was my own that brought me here to begin with. I can still recall thinking, huh, when my OBGYN said to the members of my birthing class when I was pregnant with my first child, remember, we work for you. Your insurance company works for you. You hired me to paint your house, and I painted it the wrong color. You’d say something. It was the first time a provider had said that my voice mattered, that I had a right to expect something of the interactions with providers, that they met my needs.

And yet using my voice didn’t become real until we were in the hospital with our first child, newly diagnosed with leukemia. In that moment, I was in a whole new world. I was learning a whole new language. I was learning to use my voice to not advocate just about my own experience, but about my child’s. That threw me into this world head on. I learned in those moments how important my voice was in the clinic and in the hospital room. I will forever be grateful for a nurse who came in and found me in tears after a resident had told me they had to examine my child after I’d promised she could sleep, that I had a right to say no, that I had a right to ask questions. And it sounds so funny to think about that now that as a parent I had to be told that I had a right. But when you’re a young mom in a room in a new situation, I needed that validation. And it was so important as a parent to recognize that she in fact was a mentor that I needed to find my voice and how much that helped me in the rest of my journey. When our third child was born, I learned how important it was to be a full partner, not just as in his medical conditions that was an infants, but in the subsequent IEP meetings. I alone kind of understood the complex array of the alphabet soup that followed his name. So, my ability to ask questions and work with his providers on his school team really helped him to obtain the goals that he set for himself, that we set for him in early years, and to have a successful school experience.

Sylvia (14:18.301)

My ability to give him voice, even when he didn’t have one, mattered. But none of this was automatic. Like Michelle, I saw the value of engagement in my own life, and I want to ensure that other families have the information they need to partner on behalf of their own children, but even in a bigger way, to help us to shape the systems in a way that helps them to meet the needs of all youth and families. And so…

Today I’m here.

Emily (14:52.172)

Thank you, Michelle and Sylvia for that. Michelle, has the issue of family voice changed over the years and how has PIC and NHFV evolved to meet it?

Michelle Lewis (15:03.761)

Thanks, Emily. I think we’ve talked about that a little bit. And you can actually see what we talked about earlier in both Sylvia and I’s story. So, in the early years, family engagement a lot of times meant a representative voice or two. And so, it’s evolved from engaging that quote representative to valuing actual engagement from diverse perspectives. So, we went from one family consultant, to family advisories as an example. And I really think this is partly due to the recognition that it paid off. It mattered and it should be built on. I think the systems around us saw that as we worked to engage families at that system level and we brought the family voice there, that it worked. We started to get different perspectives and built upon kind of what was happening in the communities and what was happening at the family level to improve those systems. Family voice also used to be seen as a mechanism for advocacy, but it has evolved to a place where providers, educators, and systems builders rely on the people they serve to inform the design, the delivery, and quality improvement of the programs and services they offer. So, in other words, to sum this whole thing up, is that Family Voice has become a necessity in shaping education, healthcare, and family support.

And at New Hampshire Family Voices and the Parent Information Center, we know the power, and we are assisting families and systems to work together for the benefit of children and their families.

Emily (17:12.972)

Thank you, Michelle, and thank you, Sylvia, as well. And thank you to our listeners for joining us to this inaugural podcast where we got a chance to get to know the leadership behind the Parent Information Center and New Hampshire Family Voices. We will be releasing new podcasts approximately twice a month on topics including early childhood, school years, transition, health care, and youth self-advocacy. Thank you for listening, and stay tuned for our next podcast episode.