HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Partnerships with Families

NORA WELLS: Thank you so much, Diana and Kathy. And, as I said, I know those of you who have been in the Federal Government for a long time and those of you who are people who might be funded by the Federal Government, know that in many times it's hard to locate the sources of funding that will fund ideas that we know are really good ideas.

And here we have example of two federal agencies who have really worked together to fund, as Diana said, ideas about parents becoming the exchangers and the controllers of certain amount of information that can be really valuable to improving services.

So let me just give a little perspective from the Family Voices national point of view before we hear from two of the funded sites themselves.

As Diana and Kathy mentioned, Family Voices has contracts ‑‑ well, it has a cooperative agreement with MCHB to provide technical assistance to a whole network of family organizations in this country that originally started, many of them, as volunteers and many of them started from another history altogether. They might have been part of special education, they were part ‑‑ some of them were part of disability specific kinds of work, many of them worked on the early intervention laws or were parent to parent or were part of other statewide advocacy efforts.

So Family Voices is a linking organization that links a number of groups who have been active in this country for a long time but haven't had the opportunity to link up nationally until the last 10 years. But it's now within the last three or four years that we have started getting actual funding for these groups to perform the kinds of activities that both Kathy and Diana mentioned that they, as family leaders, knew were so important to the families in their states.

As Kathy and Diana have said, if you add together the CMS funding and the MCHB funding, there are 35 funded Family to Family Health Information Centers right now with the RFP out for another 10; so that would bring it up to 45, although some of those who are presently funded will be running out of funding this year, some of the six, and hopefully might be funded upped that initiative.

So we don't know exactly how many will be funded by the end of this RFP, but we know there will still be an important area for more funding.

The comments that were made I think about sustainability this morning, when you listen to Lee Shore and you thought of the studies that have gone on about what has worked in our inner states and inner communities to improve services and then the problems that those groups often have in being sustainable; the fact that in her first book half of the groups that she studied as being best practices were not funded by the time ‑‑ I can't remember the time span, but by the other time span.

It's really a shame. I mean, when we think we know what seems to work, it's really imperative to us that we find ways of sustaining funding for those groups.

But, as I said, we have built on a long history of family involvement. The difference here is that the Family to Family Health Information Centers focus specifically on health issues. Many of the families of children who call Family to Family Health Information Centers have education issues, as well, and they may have already some sources of information every state has a funded system of family groups that work on special education issues.

But many states did not have any funded source of help for families around health issues, and that's where Family to Family Health Information Centers come in.

And, as Diana mentioned, they help not only families, but a large number of professionals call these groups, as well, and I'll show you some information about that in a minute. Their purpose is to help both the families and the professionals who work with them to become as informed as possible and become active partners in improving care at both the individual and state levels.

Hold on one second. But Family to Family strongly believe that partnerships are the essential building blocks of improvement. However, in order to partner, family members across the age span, including children and parents, young adults, adults themselves, elderly people must have the information and knowledge to participate in their own care and to contribute at a systems level to the kinds of discussions and decisions that are being made about their care.

So that's what's really very ground breaking about the funding for these Family to Family Health Information Centers. And when I show you a little of the information they can provide and when Dara and Josie talk to us, you'll see what I mean about that.

We really feel, as family leaders, that true partnerships only occur when power is shared, and power really is centered in information and money. Funding for the Family to Family HICs has been a contribution to building a power base of family partners, children, youth, parents and adults.

Some Family to Family's are located within family agencies that operate with ‑‑ and I would have to change this from blending as well as braided funding, I thought that was a very interesting distinction made this morning from a variety of agencies.

While other Family to Family's operate primarily on federal funding, some receive a number of other kinds of fundings. But they all connect, as Kathy was mentioning through the opportunities that Family Voices has been able to provide on calls and websites and meetings and conferences, et cetera.

We at Family Voices also do some data aggregating of data that these family groups have been able to pull together to begin to show the kinds of efforts that have gone on, and this slide shows over the last year, but what I really wanted to show and you ‑‑ can go on to the next slide ‑‑ is that this year, over 200,000 requests for assistance were recorded by 21 Family to Family Health Information Centers. Last year 13 centers got 80,000 requests.

So with an increase of whatever the difference between 13 and 21 is, we more than doubled the number of requests that were coming in. Families were 61 percent of the calls, professionals were 39 percent of the calls.

The kinds of topics are very broad. There's a little report that I have handed out that will tell you. Most of ‑‑ the biggest number of requests, however, have been recorded about healthcare financing issues, and a large number of those requests on healthcare financing issues really report problems with healthcare financing.

We do ask families to tell us about the kind of undersurved communities and individuals that they serve. At the present time they are giving us their best estimate of that, and the estimate this year was 36 percent of the families.

Here's an example of a quote from a Family to Family that cultural disparities tend to be a big issue. She's talking from Nevada and particularly talking about rural incomes and low income people and also people from racial and ethnic minorities.

Family to Family's report, as I said, a lot of problems with healthcare financing. Many of the calls coming into Family to Family groups, over 78 percent in the last year, were about public financing. Children with special healthcare needs get a lot ‑‑ rely a great deal on SCHIP programs and Medicaid programs and Medicaid waiver programs; however, they also hear about issues with private insurance.

They are most active in trying to change public programs, I would say, because we have more avenues for people to take a role in changing of public programs.

And here's an example, just to finish up, as some of the kinds of activities they have reported in the last year where they feel they have an impact. State where they worked with a Medicaid agency in order to identify streamline ways for parents to share information about their primary care providers when their MCOs were changing or family activism that help to stave off cuts to Title V or family leadership that helped to involve Chinese‑speaking families in program and policy activities or family who impacted the development of waivers, immigrant eligibility for programs and assessment tools for Medicaid long‑term care and families' emails and letters have significant impact on proposal to charge hefty premiums. These are all direct quotes from a question we asked them about impact.

And now we would like to turn to ‑‑ oh, I'm sorry. You have to push the button a lot of times.

Here's the other kinds of things that families have reported to us. In the last year these Family to Family's distributed 710,000 newsletter, 180,000 handouts, they reached over 69,000 people with list serves, they reported 14 million website hits on websites, and they reached over 300,000 people in 6,300 meetings. So, as you can see, they are doing a lot of action. But here is some of the direct ‑‑ sure. Good idea.