HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Partnerships with Families

JOSIE THOMAS: Hi, I'm Josie Thomas. I'm from Maryland. I'm just going to speak briefly about what our experience has been in Maryland.

We are the Parents Place of Maryland. We were founded in 1990, and we were initially funded as a parent training and information center through the US Department of Education around special education issues.

And what we found over the years is that parents aren't going to divide their kids. When they call us for help, they call us for help about SSI, they call us for help about health, they call us for childcare issues; and the more we could consolidate our information under one roof, the easier it is for families to navigate the system.

We have been working around Family Voices for many, many years and have had funding from our state Title V Children with Special Healthcare Needs program, a very generous funding to continue those kinds of activities to build grassroots networks around families and healthcare.

And additionally, we have the Maryland Family Access Initiative where we are subcontracted to Georgetown University, it's a statewide healthcare financing program funded through Title V Maternal and Child Health Bureau. And then in 2003 we were funded as a Family to Family Health Information Center from CMS; and as Kathy has described, it's not a lot of money.

So what we have done is braid the money among our three health‑funded programs and continued to do activities that way that one partially funds one activity and the other partially funds another activity, all driving towards the same direction.

We have had our focus on healthcare since 1997, and we provide a lot of services to families. I'm going to describe them a little bit, and then I'm going to tell you about a few partnerships we have had; some good, some not so good.

So each year we serve about 3500 families, providing them special education information and about a thousand families a year we provide healthcare information to.

That's really a deceptive number because it's never just one contact. It runs about two to three contacts per family. So think about the massive number of contacts we have with families. It's up over 14,000 a year.

We do about 85 to 105 workshops a year between special education and health across the state, and we do a number of leadership training programs to build parent skills around advocacy. Yes?

UNKNOWN SPEAKER: Can I ask you if this is statewide?

JOSIE THOMAS: This is statewide, yes. And just this last weekend with CMS funding and MCH and Title V state money we kicked off a Maryland Health Leaders Program, which is pretty exciting. So I can talk more about that later.

We do a lot of informational stuff. We have website, we do fact sheets, we have a variety of newsletters we either print or email, and we have tons of collaborations both at the state or local levels. And I'm going to talk about these four partnerships.

Title V, Children with Special Healthcare Needs we got involved with early on in 1997 when they were implementing a redesign process. It was from the change from providing services and paying for them to developing infrastructure in the Title V Children with Special Healthcare Needs program. And when there was an evaluation, they did an evaluation; and the number one thing the evaluator said they needed to do was to partner with a family organization, and there we were.

So that's how we started our relationship and over eight years we have had continuing funding from Title V Children with Special Health Care Needs. They provide a match from many of the activities that we do. And the kinds of things we have done with them and of course parent education and support. We have done program evaluation for them from a parent perspective. They fund a number of medical day care facilities, and we have evaluated them from a parent perspective, which has been really fun.

We have done a number of focus groups statewide for them, surveys, talking to parents, and have developed databases where we collect parent information that makes it a lot more parent friendly than having that information be held at the state level. Families are more willing to share information with us than to provide it to a state agency.

Under our Maryland Family Access Initiative, we have developed a partnership with Medicaid. You can see Grace in the middle, Grace Williams, who is our Family Voice's state coordinator and her twin daughters with autism. Her daughters have severe behavior, so let me tell you, they keep her hopping.

In this partnership she works one day a week at Medicaid at the state level at the highest level, at the policy level and participates in the Special Needs Children Advisory Council, the Medicaid Advisory Council, all sorts of waiver committees, NEPSCT. She reviews materials that go out from Medicaid from the parent perspective. She participates with the Medicaid MCO special needs coordinators at their monthly meetings to talk about what's happening with families, what are they doing, what's working, what's not working.

I had three examples of what's happened recently. One of the things she was doing is sitting in the enrollment hotline, where folks call in about their complaints, and she was listening to these calls and folks were calling in to ask to change their PCP, their primary care provider, and the person sitting at the hotline said why are people calling here to change their PCP, don't they know they are supposed to call their MCO.

And she said have you ever seen the card? And she said no. So she pulls out the card, because her kids are on Medicaid, and on the back of the card the enrollment hotline is in big red letters. The MCO phone number is in tiny black letters. Now, tell me, what number would you call?

JOSIE THOMAS: Really. So that makes really good sense, and they had never seen it. That's a change, and that's really an expensive change when you think about it, those calls coming into the hotline, rather than having them go into the MCO.

The other project she did for Medicaid was to identify was to identify therapeutic behavioral aids because they are paid under EPSDT for kids with behavioral issues, and there was no ongoing list of who did it.

So she called all these sorts of agencies in the state, identified who might and who could do it, and then tried to encourage people to enroll in the programs so that they could provide services for families.

Right now she's doing a very interesting project which is a Title V Medicaid joint project around newborn hearing screening, and she is working with them to identify the sources of support and needs and because a lot of the kids are not going for their follow‑up screenings after they have been screened, not following up, so she's going to be doing that, which is really innovative and interesting.

The other project that we worked with was a Medicaid MCO. We created this wonderful plan that we would have a parent working there one day a week, just like at Medicaid, that would be a resource for parents, she could provide outreach to members, participate on their team meetings, attend their CAB meetings, Consumer Advisory Board meetings and provide in service to the CAB and the case managers around kids with special healthcare needs and help them develop materials.

But what really happened is a crash. This is my grandson Jake. It was just the perfect picture. It was a crash. It just did not work. For a number of reasons it didn't work. I'll talk about them a little bit more. Let me have this.

They ‑‑ we have this great plan, and we had buy‑in from the top, but we didn't have buy‑in from the rest of the folks. And as the director kind of moved off to do other things, it was left to somebody else to handle, and it just did not work, and I ended up pulling that parent out of there and not renewing that membership, that relationship, which was a very sad thing for us, because I think we could have made a difference in the way they work with families.

This is a very exciting relationship that's happened in a local community. One of our parents who works in a very rural area of Maryland came to us and kept saying, you know, there's no dental care in my community for my son. That's her son, Charlie, who has Down's Syndrome, and I have to go to Baltimore.

She lives in Allegany County, which is almost to West Virginia, or I have to go into West Virginia to get dental care for him. I really want him to get treated in the community. So she really thought about these partnerships that she had and the people that she knew she met with partners, talked to them about what was going on, and she brought in the local health department's Medicaid folks, community providers, and obtained commitments from them about opening up a dental clinic for these kids.

And in order to find a dentist, because she said nobody would serve her kids, she got on the phone and called every single dentist that served in that community and finally got a commitment from one of them.

So working with this group of collaborators, including this dentist, developed and disseminated marketing materials to parents, recruited parents and supported the parents in this clinic. She organized the clinic day so now there is this dental care in the community.

We couldn't have done this without the funds to pay somebody to have the time to do this, which is a partnership amongst all of them, amongst all of our funders in the community. Right now she is working on ways to try to increase reimbursement rate. They are providing a very comprehensive service for these kids. Can we get those rates improved?

What we have learned. Well, as I said, not everyone is ready for partnerships. As we learned with the MCO, we really needed to do some culture change there, and we should have continued to meet with them. It didn't work very well, and it was really devastating crash for all of us, for them as well as us, because it got to be some accusations back and forth and it was very unpleasant.

It takes time to build these relationships. It doesn't just happen. And frankly we need a commitment from the top. If the top person doesn't say I buy into this, I'm going to spend time and I'm going to train my staff to do this, it's not going to happen. We need resources.

Our 50 grand is up. We have used that money to hire a person to help us connect our other programs and to drive this. We're going to have to find another bit of money to do this. If anybody is looking to set this up, we are great at technical assistance.

We have to answer the question for everyone, what's in it for me. Partnership isn't what's in it just for me as a parent but what's in it for the service providers, what's in it for the agencies. And frankly the other thing that we have learned is we can do things others can't. We can ask those questions, we can go to places where Diana and Kathy are handcuffed from going. We can go to those places. So that's the Maryland experience, and there you go.