HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Building Partnerships Across the Lifespan for CYSHCN

JENNIFER CERNOCH: Thank you very much. Thanks Richards. It’s nice always to follow Richard because I can build on what he says regardless of what are in my slides and I love doing that all the time. I just wanted to give you a couple of background slides on Family Voices. Most of you know what we do and who we are but basically we are a national grassroots organization of forty thousand families and friends speaking on behalf of Children and Youth with Special Health Care Needs. I’ve learned over the last four years as the executive director to say that all in one breath. So, we primarily focus in on information, education, support and advocacy. This is our mission and our core principles. If you look at the two core principles, what we focus in on at Family Voice is what becomes important to us is the partnership. Because without partnerships it’s difficult for us to improve the decision making, to enhance the outcomes as Richard talked about and to ensure quality and that’s what we are looking for as family members and to look at the accountability. As Richard talked about looking at measuring and monitoring where we need to go.

So you can take some of the words that he approaches it from as a researcher, a psychologist and you can take some of our words as family and really interchange them because we are really looking at the same system of care. When we look at partnerships, what becomes important is the family centered care. Looking at what is our best practice, what are the promising practices that all of you out there in the states can do.

The Maternal and Child Health Bureau asked a number of the family leaders to look at the family centered care movement. Where we’ve been, where we’re at and what is the definition. These ten principles that I’ve outlined for you are what becomes important in looking at the concept of family centered care. Richard talked about the system of care and the six core outcomes. You saw how they went round and round and round into developing that system of care. If you remember that within that system of care and the center of that circle is where the families and the Children and the Youth with Special Health Care Needs should be. That system of care builds around the family and the needs of the child or the youth. I always think about and I always try to think of an actual target. If you look at kind of a bulls-eye target and you think about the first circle of being that family and that child and that youth and building on to that. All of you just picture in your mind the bulls-eye and put within that bulls-eye for yourself what is that next level of support. What are those next partnerships for you within your own personal life? Well, I could be your spouse, your significant other, your children, your parents whatever and then you keep building that circle. What comes next? Well it could be your church, it could be your school, it could be your friends, it could be extended family, whatever. Then you keep building your circle and you keep building that circle.

Well for families of Children and Youth with Special Health Care Needs, we want that same kind of bulls-eye that everybody has. We want those same kind of partnerships but many times our bulls-eye looks a little different. We might be in that center but maybe the next ring for us is not necessarily our colleagues, our friends. That next circle for us many times is physicians, sub-specialists, therapists, hospitals, schools. So as we build those partnerships it becomes important for us to make sure that these ten components are part of that. So acknowledging that the family is a constant in the child’s life. I have been very lucky within my own family that I’ve had the same pediatrician since my child was born but many times that doesn’t happen. Oh we’ve changed specialists over the years so what is the constant in my daughter’s life? It’s me and my husband. Build on the family’s strengths. Every child deserves a horizon, not a box. Let’s make the strength space. As Richard was talking about building a community, being part of that, we’re one of those usual suspects. So let’s build on those action words. Support the child or the youth by learning about and participating in his or her own care and in the decision making. That’s what becomes important for us as family members.

Honor the culture diversity and the family traditions. One of the things that we have been working on with Family Voices in connection with the pro Wendy over there at the National Center of Cultural Competence is looking at the use of cultural brokers and all of you got a copy of our booklet that Trish Thomas who I think is in the back, Trish wave your hand; put together with one of our other staff members in looking at how do families use cultural brokers and how do family organizations use cultural brokers. That becomes very important to us. Not all of us have the capacity to be able to outreach in different settings and that becomes very important. Recognizing the importance of community based services as Richard talked about. Looking at those four action words. If you don’t remember anything here, looking at four action words. Building, developing, implementing and measuring and monitoring. Those are the four action words. Promoting an individual and developmental approach becomes very important for partnerships and family centered care. We are not all cookie cutters. Sometimes the cookie cutter approach does not work for families. Encouraging families to talk to other families, peers to talk to peers. We get a lot of support from one another. Supporting youth as they transition to adulthood and I love the quote. It says, “can someone teach me what to do. Who will help me with my needs when my parents will no longer be here”? That’s the reality of our children right now.

Our medical technology is saving the lives of our children. It is up to us to build that system of care that is going to support them through that transition. Developing policies, practices and systems that are family friendly and family centered in all settings and finally let’s celebrate our successes. We might not always have the right players at the table. We might not always get the same community partners that are there but let’s celebrate what we have. If we as families had to stop all the time because the partners were not there we wouldn’t be where we are today. That’s what becomes important for all of us. The critical component of our National Center on Family Professional Partnership is that families and our youth are making decisions at all levels of care. That families and youth are satisfied with the services they receive. We looked at what are the components of building a partnership.

If you look in the dictionary the definition of a partnership is,”One who shares with another or others for a mutual benefit”. That’s what becomes important for us. We have that mutual benefit with all of you as state leaders, with those faith-based organizations, with business partners, with our providers, with pediatricians, with our schools. So we want to have that mutual benefit there. Some of the essential components is just what the same thing that you’re looking for in any kind of partnership, in any kind of relationship so I’m not going to go through those.

As we go through the lifespan and as we look at birth, infant, toddler we have to remember that some of those partnerships will change over time and they need to change over time. The way we look at family centered care needs to change over time because what the baby needs is much different than what the school aged child needs. The school age child needs differ from the adult. We’ve got to remember that. Sometimes we think it’s the same thing as our children get older and we have to realize that’s not the case.

Why are these partnerships important for us? Look at the facts and the figures. Look at the National Survey on Children’s Special Health Care Needs. I don’t need to go over that with you. You can look at those numbers. You can see the impact that relationships and partnerships are and why they are so important to us. This is the reality that we live as family every day. We also have some other reasons because we found that families are more satisfied with their health services when they are partners instead of people always just saying to us what is important to us. Families rely on other families to get information. That is why the Maternal and Child Health Bureau, Centers for Medicare and Medicaid Services are funding Family to Family Health Information Centers because those things are important. Then we have some evidence base that state level support that is formally organized and that they actually pay family members as part of that partnership. Increased communication and understanding at those types of levels and finally to help educate our professionals and our policy makers about what’s important to us on quality health care.

So we are taking the journey forward with all of you and if you look at all of these pictures it’s a road leading right now to nowhere but as Richard talked about if we have that plan and we want that plan and we want to be a partner in that plan then all of these young adults, all of these children here who are moving forward, we can do it together because a full partnership for us is what is important. I’d like to leave you with this quote that says, “We who have children with special health care needs have learned patience, joy and resilience which comes from the lessons our children have taught us. Through them our lives have been enriched, learning from those lessons and sharing with those who have devoted their lives like you partnering with us in each step”. Thank you.