HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Partnerships with Families

DIANA DENBOBA: I'm Diana Denboba. I'm with the Special Healthcare Needs and from Maternal and Child Health Bureau. And the reason I'm with these distinguished ladies, I guess, is because I am a project officer for Family Voices National for the Family to Family Health Information Centers at the Bureau and for Cultural Competence as well as for some of the systems, community systems grants. So I have been working with families for a long time.

And I guess, you know, people will say, well, why do we have Family to Family Health Information Centers, I mean, you know, can't people just go to a library or go to their pediatrician or whatever? So you ask why, it's because we have had a number of either research studies, family stories that have been collected over a period of time that have told us, for example, that families like what they hear and what they get from other families, not that they don't like to hear it from their providers, but sometimes families who have been through getting the news that your child has special healthcare needs, trying to mobilize your resources, grieving for the child that you thought you would have, finding community resources, they like to talk with people who have been through similar events.

And so we had a grant with Parents Helping Parents, and in 1997, they came out with some literature and presented this to us from the findings that they had.

Also, Brandeis University, in collaboration with Family Voices in 1999 found a number of things from families across the country, one of course that families want to be informed decision makers. They want to have the control but they want to have the knowledge of having control that will make a difference, a positive difference for their children.

They wanted access to accurate information and information that can easily be understood. And then Robert Wood Johnson in 1999 came out with information that one of the best strategies for trying to institutionalize this approach is to formally organize these parent helpers, parent navigators, whatever you want to call them, to formally organize them and to of course pay them.

So with our division, of course, everyone knows about our 2010 agenda, and one of the core outcomes are things that we are looking to measure up until 2010 and probably beyond that is that families will partner in decision making at all levels. That means that their own family level at a systems level, whatever.

And at the core of this outcome are some many values, and the values are that we value family center care that has the family in the core, we value meaningful, respectful family professional partnerships, and we value the ability of providers, community leaders, family leaders to use culturally competent, culturally and linguistically competent strategies.

We also have the President's new freedom initiative that is to reduce barriers to community living for people with disabilities. And another why is because we have had a national survey for children with special healthcare needs in 2001.

And only 57 percent of families that were surveyed randomly through a telephone survey report that they participate in decision making and that they were satisfied with the services they received. And one half or more of those families, particularly poor families report that they are receiving care that's lacking at least one component of family centered care.

And you can see that the percentage is higher for Hispanics and a little lower for non-Hispanic black families. So those are some of the reasons.

Okay. What has HRSA, FCHB done? We have developed some statewide family front centers. What are they supposed to be doing that we monitor and we learn how to look and read over shoulders is that they develop and disseminate needed health care and related information to families and providers, so it's not just families but providers want to learn more about children with special healthcare needs and how they can refer them or what resources are in the community to refer families to.

They provide education and training opportunities both for families and providers. In other words, provider ‑‑ we have a Family to Family Center that works with the University, University of Vermont, and there's a course there for residents on children with special healthcare needs. And what families go through is part of that curricula. The students actually go and spend time in a home. And sometimes the families leave them there with the kids ‑‑ no.

DIANA DENBOBA: That's how they learn what it is, if they can handle it for an afternoon, you know, they begin to understand what it means for that whole family constellation there.

Our centers collect and analyze data related to what they are supposed to be doing but also their impact on the families that they serve and on systems, and also for the healthy people 2010 agenda.

We have also become a community of learners, both the CMS grants and our grants because we link to each other. We link with communities, we link with our state partners, we link to national Family Voices as well.

Our centers also we have asked them to have a plan for sustainability after grant funding. That's a whole other subject but it's something that CMS grantees are working very diligently on, as well, and we have asked that they integrate and promote our core values on these centers, which is Family Centered Care, Family Professional Partnerships and Cultural Competence.

We currently have six centers and Iowa is in parentheses because that was a set aside for one year, but our centers currently are in California, Florida, Maine, Minnesota, Tennessee, and Vermont. And each one of our centers got between I'd say 93 to 100,000 per year for four years.

What we are trying to do is these centers are helping all of us work on these core measures that we have for 2010. I know all of you know them, so I'm not going to read them to you. But what we are trying to do now is all of those efforts that people have been working on separately with different grants or initiatives or projects in states and communities to really help them come together, to pull those pieces together so that they can become that total integrated system of care.

DIANA DENBOBA: I owe this to John Nelson from the University of Utah with the champions grant. Okay. These are some of the commonalities. You have heard that both CMS and MCHB have these centers, and we have some commonalities ‑‑ you do this or ‑‑ okay. We have commonalities of course between the two.

We may be funded ourselves first, but we have been working in collaboration with CMS, although they have a slightly different focus. We believe in supporting partnerships. We are also based within the tenets of the New Freedom Initiative that I talked about before in overcoming barriers to independent living and communities for people with disabilities and special needs.

We're also working towards changing systems for the better, and particularly at the community level where, you know, families, that's the bottom line, how it's helpful to families.

We believe in our programs being family directed, and we also believe that our youth should have a role in decision making, that it's about self‑direction, self‑determination and transition to adult life.