HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Partnerships with Families

KATHY L. RAMA: I'm Kathy Rama from the Centers for Medicare and Medicaid Services. And we began our funding of the Family to Family Healthcare Information Centers in 2003.

For us it really grew out of a larger initiative that we had under the President's New Freedom Initiative called Real Choice Systems Change grants, and they are intended to provide supports for people of all ages with disabilities to allow them to live and work and play in the community.

So that's the full perspective kind of that we are coming at these grants from. A little bit different, although there are many intersections with the HRSA grantees. We have awarded ‑‑ they are unique in our grants because these are the only grantees that are nonprofit entities, all of our other Real Choice Systems Change grantees are states and then we have a few that early on in 2001 went to independent living centers. But other than that only states get our grants.

In the Medicaid program we are not ‑‑ this was a whole new thing for us because we are not a grant giving organization, we are an entitlement program and we don't tend to give grants. Maybe we would give, you know, 15 demonstration grants a year across the country, something like that, only for demonstrations.

So when this new initiative came on, it was a whole new thing for us. So for 2001 and 2003, we did a wide variety of ways to allow states to change their systems to have people remain in the community rather than become institutionalized.

In 2003, HRSA actually came over to CMS and said maybe you could help us with some of the funding of the Family to Family Health Information Centers. They are providing services to allow children, and we are certainly talking about people of all ages, and many people think ‑‑ and most of our grants, I'll be honest with you, are geared more towards adults, either adults with disabilities or else the elderly with disabilities.

So we only had a few related to children, and we saw this as a great opportunity to allow us to provide some grant funding to focus on a group of children and families.

So in 2003, we gave 9 grants, in 2004 we gave 10 more grants, and in 2005 we gave an additional 10 grants. So we are now up to 29 grants. And as ‑‑ I think we are testing this two different ways. If you'll noticed HRSA's grants were for 90 to $100,000 a year I think over four years, so they are giving fewer

grants of a greater monetary value.

We are taking the opposite view of this. We are seeing this more as seed money and hoping that once the grantees get started they will find ways to sustain themselves. So our grantees are only receiving, for the first two years they received $150,000 over the course of three years.

So significantly less than the HRSA grantees. And for this year they have $165,000 over the course of three years. But that includes money in there for them to buy technical assistance, where in the past we had a separate technical assistance contractor. So they are much smaller grants. But I am amazed, I am shocked, and I am always so proud to go back to our management at CMS to say we are buying so much for this little bit of money.

As you might imagine, it's incredible, and I'm sure when you hear the grantees you'll hear it, like wow, how could they do it with this teeny bit of money? They spread it so far, they partner so well, and they use a volunteer system so incredibly that it is, I think, one of the best investments CMS ever made.

The purposes of our grants are a little different. They are to provide information and education on healthcare. I think HRSA would agree, Diana you would agree, yours are the same in that one, to families of children with special healthcare needs, parent groups, providers and other stakeholders. To provide training and education on health ‑‑ we always talk in terms of health and community base services because that's kind of the Medicaid terminology that we use.

And they do these kinds of things through websites, through list serves, through toll‑free lines with individual counseling for people, through training packages, through brochures, through fax sheets, so a wide variety of ways they get this kind of information out.

They provide information and referral to other programs and benefits that can help children remain in the community. They collaborate with existing Family to Family Healthcare Centers. They provide a forum for peer group discussion. They help families assess their potential eligibility for public benefit programs.

Many of our grantees are also doing this for private insurance, answering private insurance questions, as well, and they promote the philosophy of individual and family directed supports. So it's a little less about medical home kind of things.

We also include cultural competency as a value in our grants, as well, so we do have that in common. So we have many points of intersection, and we have a little bit of divergence.

To be honest with you, the people who apply for our grants are so hooked into the MCHB system that they are probably doing all of the things that are in all those core ‑‑ the 2010 agenda and everything anyway.

But we just come at it from a little bit different angle, I think.

Our grant ‑‑ did we put up my states? We already put up my states? We already put up my states. Our partnership with HRSA, as I said, it began due to HRSA's initiative, and we have maintained a close connection, that's great, Diana and I. We share our technical assistance contractor for the first two years.

Our technical assistance contractors, which are Rutgers University in New Jersey for 2003 and for 2004 is the independent living file are you ‑‑ I can't even remember what that stands for. They have subcontracted with Family Voices.

Diana has a technical assistance contract with Family Voices, so that made it very simple for us to merge all of our calls, et cetera.

We have a lot of technical assistance conference calls, some through our TA contractors, some that we just put on ourselves. So we have had some recently, we had a series of three on cultural competency issues. We had one on developing parent networks. On the cultural competency we had some experts and some grantees speaking.

We often try to have grantees speaking to each other because our grantees that are more specialized in cultural competency have a lot to share with other grantees, so we always call on our grantees to do that.

In developing parent networks it was all our grantees, just talking about the various ways they had developed their parent networks across the state.

And we just had a great one with again one grantee and two non‑grantees on sustainability. Sustainability is a very big issue for the 2003 CMS grantees because this is the last year of their grant now. And the way our solicitations come out, once you have a grant, you cannot apply again for another grant. As I said, we saw these as seed money, and so we were trying to spread it across the country.

We now have two research papers running, one focused on through contractors. One will be focused on best practices among Family to Family grants, and that's intended to be kind of a recipe for other people who did not receive grants probably to copy what exactly what to do to get, to do some of what the HRSA and CMS grantees have already done.

The other one is a white paper on what an overview kind of the Family to Family Health Information Centers. These will cover both the HRSA and the CMS grantees. And that white paper is intended as an information document that could be used for people like Title V directors, Medicaid directors, congress, state legislators, anyone who wanted to do that.

There have been a lot of partnering among our grantees as well. All of our grantees share experiences on joint conference calls. We have a list serve where they can share information or ask questions, email, they share products they have developed.

We have a place where they have training packages, brochures, newsletters, legal forms, website information, information on disaster planning. CMS has a separate website. Family Voices now has a protected with a password website with these documents and products on. CMS has a website, www.hcbs.org, and all these documents for CMS grantees will be put on that website as well.

And the grantees definitely provide one‑one‑one assistance to each other. I have regular monitoring calls, as Megan will when she gets going here, with the grantees, and if I can identify an issue that someone is having trouble getting someone coming to trainings or figuring out how to get the best use out of people ‑‑ best time efficient use out of people when they call in with issues, then I am able to refer them to another grantee that I know has a lot of experience in this and seems to have solved a lot of these problems already. So there's a lot of that going on.

The one other thing I wanted to add was for 2006, right now I don't believe we have a budget yet, so the Family to Family grants are not in the President's budget for 2006, but Real Choice Systems Change grant money is in a committee language which it has always been in, that's how we get our money, it's not, you know, a law that says this.

It is still there, as far as we know, but until ‑‑ there's been so much talk of cuts and everything lately we're hesitant to say what is going to happen with the budget. So it still is a possibility there might be grants next year. And if you're interested in that, I would say call congress because they are in charge of the money.

DIANA DENBOBA: And while you're calling congress, please ask for an increase in the MCH budget. We are having a competition, actually our announcement has been out for Family to Family Health Information Centers, so those are due I think November 2nd.