MCHB 2006 Federal/State Partnership Meeting

The Road to 2010: Which Road are you Taking?

October 15-18, 2006

MEG COMEAU: From the National Centers and the folks from the states and the folks from HRSA MCHB. So if we could ask, I know for some people it's hard and it brings them out of the comfort zone if you could come up a little closer to the front that will be lovely then we'll feel like we're able to have a conversation. If you want to shift the seats so you're more facing one another rather than lined up in rows all in our places with bright shiny faces that would be great as well.

LINDA HOMBURG: I'm going to reiterate what Meg just said. We envisioned this to be an interactive session. And this is kind of the wrong kind of room, unfortunately.

Welcome everyone. I have to say I'm still overwhelmed by that awards ceremony. As a person who, I guess, I feel almost like a baby when it comes to the Title V program. Although not HRSA. I'm really overwhelmed by all the people that got awards and all the people here, too, that really have dedicated their professional careers to women, children and children with special healthcare needs. My name is Linda Homburg. And I'm a program director within the Division of Services with Children with Special Healthcare Needs.

Actually, my real hat that I really love to wear is that I'm the mom of a youth with special healthcare needs. I'm still trying to get used to saying that. And with me today are my family at the division, and I'm going to let them introduce themselves. Monique.

MONIQUE FOUNTAIN HANNAH: Monique Fountain Hannah. I'm the director of the Medical Home program as well as Healthy Ready to Work initiatives in the Division with Special Healthcare needs.

DIANNE DENOVAC: Dianne Denovac, branch of the Integrated Services Branch, Division of Services for Children with Special Healthcare Needs, and I'm director of the Family Professional Partnerships the programs and community systems (inaudible).

UNKNOWN SPEAKER: We really are a family. As you can see there's only three of us now in the branch to direct our program.

I think the theme of this meeting really fits in nice with our goals around 2010, and it's hard to believe that that's just three years away.

And we have a lot of work to do. And Meg Comeau is from the Catalyst Center and she wears an important hat which is her parent hat and I'll turn it over to her and she's going to talk about our vision for the year 2010.

MEG COMEAU: Thanks Linda. Good afternoon all. We appreciate your patience with some of the room shifting. But I think it's really going to lend itself to having more of a conversation together rather than sort of an expert panel. We're all experts in the room here in our own individual areas and we're hoping to learn from and with you today.

So the road to 2010, which road are you taking? Here in the present in 2006 we have a lot of choices about which road to take, who are we going to travel with, what's our destination. In my family there's another important question, what snacks will we bring with us. That's another topic when we talk about obesity and so forth.

We're fortunate in terms of one of these questions, our destination has been sort of identified for us in terms of the six outcomes. So you all are very familiar with these six outcomes.

The wonderful thing, the beauty of the six outcomes is it gives us a destination, a place to head for, gives us some targeted goals and they're interconnected with one another. They all interrelate with one another.

And as you can see they all sort of come together. Thanks very much to the Champion Center for providing this sophisticated piece of technology which is well beyond my personal capacity.

So in terms of these six outcomes, and the goal of getting to them and reaching them by 2010, it can seem like an enormously challenging thing. As Linda pointed out, it's not that far away.

Who are we going to travel with? What road are we going to take? We have lots of choices about how we can do that. Some of you know me in my professional role as the director of the Catalyst Center. Some of you, fewer of you, especially in Massachusetts contingent here, know me in my role as Sarah's mom. And Sarah is a young woman with complex genetic disorder.

I'd like to put on my parent hat for a little while and talk to you from that perspective.

And I'd also like to ask you to have a little fun with me for a second and just be a little creative. Rather than thinking about how quickly 2010 is coming at us and as a freight train and how much work we have to do before we get there, I'd like you to imagine we're here at the 2010. We're here at the 2010 partnership meeting and we're looking back at the decade and talking about our successes. And so I'm talking as a parent in 2010 how the system is for us.

When Sarah was born there was little connection between the service systems that we needed to care for her that she needed to grow and thrive. We had four different case managers all managing our case, and they never talked to each other.

That disconnect resulted in wasted time energy and resources for all of us, for the system of care and for us personally as a family.

Now in 2010, thanks to lots of work by people in this room, and some of the national centers programs, health, education, Social Service systems and family supports are integrated in a way that families feel like whatever systems of care their kids need, they're working with each other and they're working with the families in an integral and important way as well.

We felt the difference between case management and care coordination acutely. After much searching we found a pediatrician who practiced in the medical home model. Sarah's care was coordinated by the person who knew her best clinically who also knew us as a family. Pediatrician knows her. Knows her challenges. Knows her strengths and knows us as a family. Our challenges and strengths as well and integrates those into the plan of care. For example, Sarah's pediatrician has been on the look out for scoliosis and depression consistently over all the period of time she's been caring for her.

And this has been really important to us. These are things that are commonly seen in people with her diagnosis and it's been important to us to have that help in looking forward into the future.

Now, looking at me, to folks outside this room, they may not think that culturally competent care has been important to our family. After all, I think it's obvious, I am Caucasian. I'm college educated. I'm a middle class Roman Catholic from Boston for whom English is my first language. I am a prime representative of the majority culture.

Sort of don't stand out in any way. But cultural competence is more than just religion or race or ethnicity. As you all know it's about respecting and responding to their family cultures and family values. In my family of origin, nice people don't talk about money. You either have it because you worked hard for it or you don't have it and you don't complain about it.

Because of Sarah's complex medical needs I couldn't work for the first ten years of her life. So living in Massachusetts where there's a very high cost of living on one income was very challenging for us.

We've been very fortunate to always have private insurance for Sarah. But under insurance and medical debt were very significant stressors for our family. We were fortunate in Massachusetts to have access to a program called Common Health. Medicaid buy in program and it provided wrap around for Sarah's, paid co‑pays and deductibles and other things that are really important to help us keep our house, or otherwise we would have been in very tough shape financially.

Now we have access to an adult disabled mandate in Massachusetts. So our private insurance company, as long as we continue to file once a year the eligibility determination form, they have to continue covering her.

So I've just described some of the successes in achieving the 2010 objectives, but there is more work to be done, of course. When we get to 2010 we're not going to be finished. There's always going to be more to do.

As Sarah has gotten older and we've started thinking about the next phase of our lives we've been reflecting on what it means to be a grownup in our family's culture in the context of Sarah's special needs what will happen next for her when she graduates from school in three years will she live away from home? Are there safe high quality residential programs available if we decide that's the best option for her?

If she lives at home with us, what kinds of supports will be available for her and for us in making that choice? Thinking about transportation, in particular.

Now, in our family this is the kind of thing that we are considering, the kinds of options that we're weighing and measuring and other families unmarried daughters don't live away from home it's just not what happens, so what would that mean for families who have that experience? What kinds of supports are available for them and is the system responsive to those needs? What will her healthcare be like in an adult setting I get anxious every time I think about breaking up with our pediatrician?

I know I should be considering it, but it's really hard to do.

You may recall yesterday's talk by the Special Olympics representative. Sarah may well benefit from the work that they're doing in increasing the capacity of adult clinicians to care for people with intellectual disabilities and chronic healthcare issues.

Now if Sarah is not living at home I'm no longer her primary care coordinator a portable electronic medical record with a summary of her meds and procedures and baseline stats and other special needs the kinds of things I keep in my head which I have been keeping in my head for the past 19 years would be an enormously helpful tool for whoever has that new role.

We have a strong work ethic in our family. We believe that vocational training, since supports, the words of yesterday's speaker, it's not just nice, it's vitally important. It's necessary for her self‑esteem, meeting her full potential.

We see employment for Sarah also as a way to reciprocate the investment that society has made in her over the years. So this is a way for her to give back to be a productive citizen in the way we'd really like for her to be.

Now, her opinion is also important to us. I think if you asked her now at age 19 if we listened to her she would say no because I never get my way. But the truth is self‑determination is an important family value for us.

And so she's going to be included in this decision making. For some families, in different cultures, it's not a decision that's made just by the parents with the child. It's sometimes made just by the parents.

Or it's made in concert with other folks who are important in the community. Perhaps if we were another family we might consult with a rabbi or matriarch a person who doesn't have an official title but is an important member of the community.

What supports are available to us now around transition planning? Well her pediatrician is looking at the adult service programs and what's going to be available for her there.

The Department of Mental Retardation who will not officially take over her care until she turns 22 and leaves school is going to start coming to her IEP meeting now to get a sense of who she is as a person what her strengths and challenges are what kind of services might be important for her in the future.

Families often hear advice especially in a crisis to take one day at a time. That's good advice in those moments but in general families need to keep the big picture in mind. They always need to be thinking ahead, planning for the future.

And in the past 19 years I've sometimes felt like a hamster on a wheel, like I'm always trying to stay one step ahead and I'm not getting anywhere. This is a hard place. I wish there was someone who could show me this picture of Sarah when I got the list of nevers, never go to college, never have children of her own, never live independently.

Understanding that's not possible, none of us has a crystal ball it still helps when folks are working with us, can help anticipate those things that might be coming up who can help us get off that hamster wheel and think logically and clearly about what's coming up next, giving us some anticipatory guidance around this road map that's going to be Sarah's life.

So let's step into our time back machine and goes back to 2006. We're now back in the present. Some of the things I've mentioned are real they're happening today like the common health Medicaid buy in program. They just haven't been brought to scale or they're not available in every state. Some is more hopeful thinking like the integrated community‑based system of care for all kids with special healthcare needs. They're very promising starts that have been made in that area but there's still a lot of work to do to get there.

As you all know, the Maternal Child Health Bureau funds six national centers to provide leadership and technical support to states who are working on the 2010 objectives.

We can be your traveling companions. As you're making those decisions about what roads you're going to take, the choices you're going to make to get to those 2010 objectives we can help to plan your map, get in the car with you do a little driving with you.

We can help give you ideas around other states have tried that. There's a bump in the road. Maybe you want to consider going down that direction.

I'd like to have my colleagues from the other national centers introduce themselves now and then we'd like to open this up to a more interactive conversation with you all about your questions, your comments, the experiences that you're having in getting to the 2010 objectives.

So let's start with Nora Wells.

NORA WELLS: Thank you. Meg. What a beautiful picture that is as Sarah as a little baby and Sarah as a 19‑year‑old.

I'm from Family Voices, a national center for family, professional partnerships. And we have some materials in the back which we'd love to have you take of some services we can offer to you.

But I'd love to hear from you, what kinds of challenges do you find in having families as partners in some of the (inaudible) that you view in your work. Does anyone have a challenge that they've faced?

UNKNOWN SPEAKER: I'll start. I think that one of the challenges that we faced in Minnesota, excuse me I took a bite of chocolate before ‑‑

UNKNOWN SPEAKER: You didn't bring any for anyone else.

UNKNOWN SPEAKER: That's question number four.

UNKNOWN SPEAKER: I'm glad there's some in the back so I don't have to answer the question about will I share it with you.

One of the challenges I think we face in Minnesota and everybody faces is to get the commitment from either, A, non‑Title V health departments, public health agencies and I might even be so arrogant to say nonchildren with special healthcare needs health department employees, but also I think most important at least from my myopic point of view, our Department of Education. And other players.

So if someone has some magic pixy dust they can sprinkle so people can get some really good take‑home hints about how to, I think, advance the what I'll call one of the fundamental principles that I've learned over the last few years that I think will be absolutely essential to continued success, I certainly would welcome it.

NORA: That's a fantastic question and I think Meg would speak right to it, wouldn't you, in terms of Sarah's experience and what any family needs. We need to have, you mentioned it, we need to have those services working with us connected to each other. Or we're the go between trying to have all those things happen.

It just happens to lead in ‑‑

MEG COMEAU: Yes.

UNKNOWN SPEAKER: Just pick up these brochures, see if they would be useful, sharing with other folks, and seeing them as a potential link between some of these associations. I don't know if that helps in any way.

UNKNOWN SPEAKER: I have one other thing, sorry. I want to announce a National Center of Medical Home Initiatives.

UNKNOWN SPEAKER: Sitting in our room, we apologize.

UNKNOWN SPEAKER: One of the things we looked at looking at the issue of getting education and health is a big issue of almost every state. Looking at how to get health goals even as the IEP. Some of the things we looked at this is where I think looking at your provider organizations and looking at who is already making that link can be really helpful.

As some of you may know in the AEP chapters and also in the national AEP and also in the AEFP there are some people who have different committee ounce school health and adolescent health where they have representatives from special education and education already sitting within the health arena.

So I think some of the issue is kind of doing investigating as what I look at and who is friends with who. So I really think there's something where that link is actually happening but maybe not in Title V but maybe already between health and education.

So and I can send a note to the AEP executive directors to expect this e‑mail because I'm sure all of you are going to do this when you get back.

But e‑mail your AEP chapter executive director or AEFP executive director say who from the Department of Education or department of special ed is sitting on one of your committees, because that person is already invested and I think the issue is piggybacking on top of that. But to know that that connection is happening.

NORA: Another thing, building on that, Lorrie, is often an issue, it's often around an issue you can bring folks together and then from that issue you can build forward. You're talking about there being a standing existing committee. That's another avenue of trying to push forward.

The other thing I just wanted to mention from the national center is there's a number of funded sites. You know because you have one in your state, family to family health information centers, that Peter Van Dyck was mentioning this morning.

There are 35 funded family health information centers in the country. Listed on the brochure in the back. Any of those would be ‑‑ they're all organizations and those would be important organizations to contact in your state around any initiative of trying to get across agency things going.

But there will also be, there's a funding coming down over the next three years, there will be 50 of these in the country. So this is a growing movement. And you know I think it's something we want to be in touch with in your state.

UNKNOWN SPEAKER: Can I just join, put on my (inaudible) introduce yourself.

TONY WALL: I'm Tony Wall, and I'm with the Healthy Ready to Work National Center. If I can put on my CHSN hat on for a moment, saying one of the things I did because all of us sit on numerous committees. Several years ago every committee I went to I looked around said where is the family where is the youth. Where is the family where is the youth. Most people looked at you like you were out lost in space, but you know I go to those meetings and actually I volunteer. I said I'll bring the youth I'll bring the family and guess what I'll pay for the stipend and again their jaws opened.

But now I have other people around the table meetings I go to, hey, where is the family? Where is the youth. And it's amazing how a culture change has actually happened in main where that's their expected to be at the table now.

UNKNOWN SPEAKER: I have a similar story in that I mentioned before I have a youth with special healthcare needs. I actually got asked by CDC, not as my role within the Maternal Child Health Bureau, but they had gotten my name through a parent group called About Face looking for a parent, because they had never had a parent on their group.

And I went down there and I think it's a given in Maternal Child Health world that we have families. And almost floored that I was the first parent, it was a research group.

At the end the head of the program came up to me and said I never realized how valuable a parent could be in terms of this group. Now, I think they got more than I expected because obviously, you know, I'm really knowledgeable.

But I think the point is that there are a lot of parents out there in your agencies that you know 12% of ‑‑ 12% of kids have special healthcare needs. They're working in your agencies and they're employed. So you kind of get a two for one in terms of having a family but also having someone who knows about a certain area.

NORA: Just to build on what you're saying, that's absolutely true. The culture within Title V including recipients of services in the program and policy level of discussion is way beyond what that is in any other government agency. The only one that's coming even remotely close is mental health, I would say. Mental health has done a lot of work but Medicaid hasn't been on the radar screen. I was of the generation before there was special education. Even though we have great protection in the laws in education, there's an adversarial relationship that occurred in education in some ways because of the ways the laws developed which has not occurred with all, within the Title V agencies.

So you are the leaders in this. That's why I was mentioning the books, because they might give you some opportunity to think about ways in your state that you could share that information or you could think about being a leader to try to pull some groups together around a particular issue. Whatever it is. But I think you do have behind you the fabulous guidance that you had from the federal government to really think about the clients that you serve as an important partner in improving services.

UNKNOWN SPEAKER: In that publication you also talk about how to get the different parent groups to come to the table together.

NORA: Yes, this is all from the words of the Title V, children with Special Healthcare Needs MCH directors themselves, they talk about how difficult it is and the strategies they've used and then the children with special healthcare needs side, you can see the growth that's occurred over a ten‑year period because it was asked ten years ago and then again ten years later. So it's really pretty powerful to see what your guidance has done on the federal level to really include family groups as partners, families themselves of all diverse background.

Every one of these people said we know we can't just have one parent from something representing everybody. We have to have an avenue for having a lot of folks involved.

UNKNOWN SPEAKER: And that leads right into the next national center we have is the national center for cultural competence. And that center works very closely with Family Voices and other national centers about integrating cultural linguistic competence into everything you do, including family‑centered care, family professional partnerships, community integrated systems.

So I would like for our representative to introduce herself.

UNKNOWN SPEAKER: You said it all. I don't have to say anything.

WHITNEY JONES: I'm Whitney Jones from the National Center of Cultural Competence.

For a moment I'll just say that I think that, yes, because we also have done some work. (Inaudible) nor the surveys or any of those things with you guys we've done some quarterlies and collected stories about how as directors as program people and you are actually integrating culture and language into your service delivery or into your contracting procedures, making those people that you would contract with be responsible for upholding the values and beliefs that you expound.

So what I want you to focus on how are you making the link to family centered care and providing culturally and linguistic competent centered service. One hand, two hands?

UNKNOWN SPEAKER: One of the things we did from Indiana, we have an office of culture diversity enrichment which offers training on a monthly basis and we require all our clinical grantees to participate in their training and we also serve their operations once a year to make sure ‑‑ we also operate the Friendly Access Program, I don't know if you're familiar with that. It's based on what Disney does to actually make things accessible and a friendly atmosphere so we don't have any unnecessary barriers to care.

So we focus on those two issues, cultural competency and the official training is one but then maintaining that friendly atmosphere and accessible atmosphere in the clinical settings is the second part of the component.

One of the things that we're still struggling with is customer satisfaction surveys. We haven't figured out a really good way to do that yet that's not just sort of middle of the road comments back.

Truthfully, these families have enough on their plate that they don't take time to fill out the surveys for us.

WHITNEY JONES: One of the things that we've been following up and being involved with a couple of different organizations and agencies is looking at getting satisfaction and possibly improving sort of information back in the form of focus groups. One of the things we find is families have such a wealth of information that often for some folks it's not easy to translate onto paper, to write it down. A lot of people, cultural background regardless are not comfortable giving you personal information. Survey information that we as people who are trying to seek the information might not consider to be personal.

You'd be surprised at what people feel is sort of invading or stepping into their lane, quote, unquote, to use one of my colleagues' vernacular, stepping into their lane or into asking them questions that they're not prepared to answer. Or that even on the phone who are you, I don't know who you are. It's not in my cultural belief or my cultural understanding to be talking with you about service delivery over the phone.

And then how is it going to impact me? If I say something that may not sound so hot to you, am I going to lose my services?

But that when you get them all together they're all like security in numbers and the wonderful, rich bouncing off of each other that happens in terms of families sharing and sort of problem solving together, sharing information together and really giving you huge buckets of very rich information that you can use to help you with your planning, to help you with your, how we might ‑‑ even some star parents who sort of shine and maybe you want to pull them in include them in a little bit more often or more frequently to help them to get used to working within the system in a more continuous fashion in order to provide information back. It could also be your cultural brokers. Tapping into what's happening in the community and bringing that information back to you and helping the community understand what it is that you have to offer and how you offer it.

You know how one person can say one small word and pass it around. Georgetown gives horrible services. I'm saying Georgetown because that's where I'm from. I don't mean it seriously. It's just an example. Someone opposite the town might say they're unreachable. You go there you wait forever. All it takes is one person to take that back to the community and no one is coming. So the same thing happens about when you have good news and your practices are good that families will take that back and spread the word and it does what increases those who may be willing to come to you to check it out to see if it's true.

UNKNOWN SPEAKER: I have a question. In thinking about, I'm trying to be a little practical, to achieve culturally effective service, with the emerging change increasing demographics and decreasing financial resources, to max optimize translation services, to reach the multiple populations in, say, a community that doesn't have a lot of services, what have you or if anybody have been able to approach the private sector in providing that kind of service.

For example AT&T has a service where you can, but there's certainly some of the medical institutions have contracts with them to provide that service where you can just pick up the phone and be able to, there's multiple languages. So it could be Swahili or any other language that you need to be able to speak to the person you're trying to provide services to.

 But in the public health sector, I mean with the limited resources, are there any solutions and I don't know if anybody has been able to leverage that, the private sector into providing that service.

NORA: I'm staying shut to see if your colleagues have comments.

UNKNOWN SPEAKER: (Inaudible)

UNKNOWN SPEAKER: So that may be a solution.

UNKNOWN SPEAKER: It's a bridge. Still doesn't have all the languages. What you can do with your current (inaudible).

UNKNOWN SPEAKER: (Inaudible).

UNKNOWN SPEAKER: Also I would encourage you to check out the (inaudible) Web site, Speaking Together, was our Robert Wood Johnson funded initiative to look at ways at increasing communication and so interpretation and translation are both covered, on their Web site they provide information, feedback from that ten model programs that were established across the United States in terms of bouncing back and excellence in providing interpretation.

UNKNOWN SPEAKER: What's that Web site.

UNKNOWN SPEAKER: HABLAMOSJUNTOS.org. In issue speaking together. Go to speakingtogether.org and check it out. And they are very excellent in terms of cueing them up, give you information

UNKNOWN SPEAKER: Another resource might be looking at your town chamber of commerce, you might have your Hispanic chamber of commerce, Asian chamber of commerce, they've been a resource in different areas

UNKNOWN SPEAKER: I think the District of Columbia, the health department and maybe other state entities got together, I think, and I may be wrong, and put some money or contract with well established community‑based organization who had trained interpreters, you can correct me, so it's a full pot of money. But these interpreters are used by quite a few agencies so it's not one agency that carries a burden.

UNKNOWN SPEAKER: Right. And so based upon that, that's how they started but then they started going for some (inaudible) and so locally here they do offer translation interpretation and do that for lots of providers, health providers in the area.

UNKNOWN SPEAKER: In the DC, strictly DC.

UNKNOWN SPEAKER: Sounds good, I took away everything that you ‑‑

UNKNOWN SPEAKER: One of the things that families Meg was saying really they struggle with is all the services that are provided by different systems. And we have a national center to focus on organizing on the community services. So Adrian I'm going to let you introduce yourself and tell everyone about your center.

UNKNOWN SPEAKER: I'm Adrian Acres and I'm representing the fifth performance outcome, which is community‑based services will be organized so families can use them more easily. Our current national center, funded late last spring is called champs I don't know for inclusive communities. Based out of Utah, state universities, early intervention institute, and recognize a lot of faces.

There are a few new ones sitting here. We had previously had a national center for leadership for children with special healthcare needs program called Champions for Progress. We morphed it into Champions for Inclusive Communities. And listening to the comments that have been coming so far is that the idea that no one's program can do it overall. If we don't do this with an integrated process across community‑based programs, we're all sort of in the wilderness hoping that someone is actually going to listen.

So I just want to reiterate that the importance of looking to your own communities for those kinds of solutions, one of the things that I think that quite effectively in our previous grant was to recognize that a bunch of experts up here is just sort of, you know, nice but really you all have the knowledge that you can share with one another.

So I really appreciate the comments that are coming from the group here to really come up with ways that, for instance, translation services can be offered at state and community level and so I'm going to sit down, because what we're hoping to do is eventually get to the point where we do have this more open discussion where you can all share this information.

One other thing I'd like to mention I see two of my buddies from the states, one of the things that came out of our center recently is the new (inaudible) system or new universal application system where people can apply for multiple programs for one integrated Web site and have that information delivered across program and we've got some representatives from Indiana and Oregon who are also bringing up the system and just got a national award from the council of state governments for the Utah click system so anyone interested in hearing more about it I'd be happy to talk to you

UNKNOWN SPEAKER: Maybe you can talk more about what you're doing around integrating it. Do you want to say a few words about it?

UNKNOWN SPEAKER: We actually used one of the integrative grants to coordinate a pilot project which we're in the middle of looking at, of taking what they learned in Utah click and applying it to Oregon.

UNKNOWN SPEAKER: It's interesting between the two states, because right now, because it was done through very limited funds and trying to start getting this going, there's now a state senator who is interested in learning more about it to possibly get a real funding base so this could be move into a pilot statewide. In Indiana there was a governor's mandate that provides the original funding to actually get the this off the ground in a more fast forward sort of a way.

So the interesting thing is at the community or state level, there's not a cookie cutter that's going to work for every state. It really has to be looked at within your own circumstances. Every state and community has their own challenges and throwing money at things isn't always the way to get them to happen. So even though something sounds great, national meeting like this, if you don't filter it through your own situation at home it probably isn't going to be very fast.

But again the idea of I think including families from the get‑go is the way most things make progress. And our families, 96 percent of the families in the system say why haven't they done this before. So you can't get much better ‑‑ you can get a little better than that but not much.

UNKNOWN SPEAKER: Part of what we've done is the concept of build it and they will come and they that we're hoping that will come are other programs, because the other state programs that participate to accept the application through universal application system, the heavy players are Medicaid fortunately are Medicaid system in Indiana is undergoing huge basic reorganization.

So there's so much dust in the air within their own organization that they've got minimal attention. So truthfully if it works out that the State Health Department is taking a lead to implement what we're calling Indiana wins, based on Utah, and you know there are several funding streams that support that.

We will go live in January and actually we're taking a page off the Utah did it and we're going to have what I'm describing as a silent release that it's going to go live and people can access it and we're going to work with a couple of partners, actually EMS its use in a couple of areas.

It's going to be like a live beta test because it's going to be the first implementation.

And once we get some experience under our belt then we'll publicize it. When Utah did that they (inaudible).

The other thing we've done, I don't think we've mentioned this yet Adrian, is we've included family groups in the review of the planning for this.

And one of the things they mentioned which we're seeing all these great ideas, that will be phase 2.

UNKNOWN SPEAKER: It's exciting. That's great.

UNKNOWN SPEAKER: So that's another example of we're involving families and asking things that, gee, I wish I would have thought of that but that's why we asked you.

UNKNOWN SPEAKER: I want to ask a question, because these are great systems, but what about families that don't have access to computers?

UNKNOWN SPEAKER: Doing a couple things. I mean the entire basis for the system is to empower families to access it themselves either from their own computer, the libraries have public access computers.

But we realize that we have either not, I don't want to say technophobic people but people that don't even want to touch computers. Being able to operate one doesn't mean they're going to use it.

We're also trying to set up certain key centers where they will be, what we're trying to do is actually establish a kiosk that's going to be a kiosk that will be with assisted service, some of the WIC clinics we're trying to do that.

WIC's proviso is that if someone wants to come in apply for WIC, we'll help them and oh by the way they can apply for your program too. If they don't want to apply for WIC don't come in our door type of thing.

So we're challenged in that area.

Some of the MCH clinics that I fund directly or are willing to do what I ask them to do, especially if I pay them for it.

So that's the way of addressing that is to have other mechanisms program access that I've got a staff member at the intake site that will help walk it through, and they'll still facilitate family's access to the program, let them apply for multiple programs at the same time.

That's part of the issue I'm dealing with Medicaid right now is that they have signed up at this point to accept programs, sorry, accept applications generated through this but not necessarily use the system for people that walk in.

See in Indiana I've got the application site for Medicaid and TANF and food stamps are the same as WIC. I want someone to go in, if they want to apply for food stamps they can go in and say (inaudible) you may be eligible would you like to apply? So far we're not quite there. And I've got the same issue with the early intervention program. But there's a positive philosophy that the governor is pushing down that he wants to make access to all these public programs generally available and facilitate that.

So once we build it, I think we can get the use

UNKNOWN SPEAKER: I agree with what he's saying. It goes back to the comment on cultural diversity includes families. We really think this is a great approach but the bottom line is still family choice. We want this to be universally available but not for it to be tied in. So there are families who will not be interested in doing this or for when things are done, or not able to do it. And we want to make sure this doesn't become the only means ‑‑ so we think it's a great way to access it.

UNKNOWN SPEAKER: Maybe in our release we'll get this many families and we'll figure out what to do best and gradually increase it. But it's not to immediately go to paperless. It's to offer the concept is to offer a new way for families to apply for services for those families who feel capable doing that.

What we're finding for sure young families, they'd much rather do this than do this. And so we're kind of capturing that information and the fact that it's available 24/7, you know especially on weekends. We can see the data, it's after hours and on weekends, that's a nice feature

UNKNOWN SPEAKER: What about multiple language?

UNKNOWN SPEAKER: Right now it's available in English and Spanish. They can handle any Latin‑based language using the current code and other languages there has to be some additional code written.

UNKNOWN SPEAKER: Are you able to capture any kind of demographics in terms of who is completing going into the system? Because I mean it would be interesting to see if it was certain populations, if it was just young people, if it was just people living in urban areas and different cultural groups.

UNKNOWN SPEAKER: Right now, because of the confidentiality issues, that is not able to be captured at this point.

You possibly could do some aggregation of that. But we had (inaudible) to do the research.

UNKNOWN SPEAKER: What we can do, Dennis, you can capture that at the program level, like from the children's program I can identify exactly where applications that are receiving the application system. But I won't know how many people applied for Medicaid, for example.

(Inaudible) (cell phone ringing)

UNKNOWN SPEAKER: Shouldn't we be changing seats?

UNKNOWN SPEAKER: Sort of in an effort to reach people where they are, have you thought about grown this out in grocery stores, I've seen these deployment centers

UNKNOWN SPEAKER: One of the things that's tricky is it can take 45 minutes. If you're applying for a couple of programs, that's a lot of information to be doing and get a kiosk people are walking by you're distracted by your kids yanking on them.

So that's one thing it will remain to be seen. We tried kiosks a little bit in Utah. There's been nobody to do more of that. So I can't say how successful had they really had that support but in the end planning on doing

UNKNOWN SPEAKER: Our kiosk will be in enrollment sites, currently doing enrollment sites. The staff is going to be available.

UNKNOWN SPEAKER: The nice thing is even if they get some of it, don't have some of that information, if they forget to bring certain (inaudible) they don't have the information for they can walk in at another time and complete it.

UNKNOWN SPEAKER: This is my youth with special healthcare needs. Reporting in after school. I'm sorry, I really apologize.

Actually, we're going to go ‑‑ hopefully you're getting the theme, the whole purpose of this session was really, as you can see, each of the six core areas are supported by national center and each of the national center representatives are sitting up here.

It really was an opportunity to sort of let us know there are resources available as Title V, as children with special healthcare needs directors but also to hear some of the challenges you're running into at the state level and some of the practices and policy and practices that you're engaged in as well.

UNKNOWN SPEAKER: Monique, one of the things we wanted to accomplish in this session is we all sort of know intuitively the six objectives are interrelated with one another and the six national centers are interrelated with one another. We're working in collaboration with one another. And we're working in collaboration with the states.

And if we can help facilitate states working in more collaboration with one another, then that's a good thing as well.

UNKNOWN SPEAKER: With that being said, I'll move on to the next national center so you have an awareness and a face to put with some of the center directors.

Unfortunately, the American Academy of Pediatrics representative is not officially here but we have a proxy. And so a month ago was an American Academy of Pediatrics representative. And (inaudible) our way of all the six core performance measures as Meg said have a lot of cross over and medical home is really our way of being able to say we're putting the system in place it involves insurance, family professional partnerships and involves the connection to communities and of course they're going to transition to youth and to adulthood.

Laura, did you want to say hi and a couple of things about the national center, just, in your past hat just put it on

UNKNOWN SPEAKER: I don't think things have changed too much in the last month. So just to give you a few ideas what the national center does. As Wendy said it's housed at the American Academy of Pediatrics. What they're there to do is to really help around influencing policy and changes at the local and state level to really make sure that kids with special healthcare needs and kids at risk really have comprehensive coordinated care.

One of the other goals is helping to do education and training, but also to really make sure that you're not reinventing the wheel. Just as a good example I'll throw out like care coordination. Care coordination happens at every level of the deal. Happens in the office, happens in the community and it involves a lot of different systems and players.

And I think every state and every community does it very differently. And so what we're trying to do is really keep track of who is doing it. I can't say we. They are trying to do is really make sure that you know how providers are doing it, how states are approaching it, how Title V agencies are approaching their provider organizations to make sure that the providers know what resources are available in the community and that the providers know how to inform Title V what's happening with the patients and families that they are working with in their offices.

So it really is a collaborative effort.

So everything from surveillance and screening all the way to transition. We really ‑‑ they really try to keep track of what's going on. They have pilot projects going on right now, especially around surveillance and screening which I think is very exciting. To really look at what are the different strategies practices can do to do ongoing surveillance and screening and to let people know how to connect some of the systems in the community and to keep echoing within the practice.

Also again because it's within the AAP there's also a lot of resources around state and local advocacy, as Title V agencies you're not always able to do. That's why I want to throw out your provider organizations are a huge asset to really sometimes deliver a message you can't always deliver. But also I want to say it should be a collaborative message they need to hear from all the centers. If there's a way to come together around this entire agenda, think that's a group you can connect with, the AAP, AEFP, Nurse Practitioner's Association, NatNAP. I would encourage you to get in touch with your local chapter but go to the Web site medicalinfo.org and get hands on access to the resources tools pretty quickly.

UNKNOWN SPEAKER: For people who may be new or scholars, could you tell what the acronyms are.

UNKNOWN SPEAKER: Yes, American Academy of Pediatrics, as you know that's the membership association for pediatricians. AEFP American Academy of Family Pediatricians, and NatNAP is the Association of Nurse Practitioners.

UNKNOWN SPEAKER: Pediatric.

UNKNOWN SPEAKER: Pediatric Nurse Practitioners. To let you know as well all of those organizations Title V, NatNAP and AEFP and AAP help inform all the activities of this national. Center.

UNKNOWN SPEAKER: Thanks. I actually have a question for Lorrie. And this is actually out of the program, epilepsy program. Many of the projects are working with community health centers. Just in terms, obviously for the (inaudible) community health centers are important delivery system. What if anything, if you know of, the academy is working with the pediatricians in the community health centers?

UNKNOWN SPEAKER: To throw out some things going on, I think the first thing they want to make ‑‑ I can't put my foot up there because I will fall ‑‑ is that we're aware this is not just a pediatrician's issue. This is who are the primary care providers in your local area that are providing care to children and youth with special healthcare needs.

Now obviously because it's chronic condition management, pediatricians caring for these kids are getting the education that are a little bit more robust to care for these kids. If you don't have access to a pediatrician in your area, you have family physicians med peds and nurse practitioners and community health centers.

Now what medical home looks like it's not a one‑size‑fits‑all. It will look different in every community and based on who is providing that service.

What is really exciting is that in the last national medical home learning collaborative, there was a state that really basically had their community health centers as the ones really working at how to do quality improvement around medical home.

So right now, to be honest, what I think is exciting is have we clearly figured that out now but right now we have Texas and there are people from Texas here. I don't know if anyone in the room ‑‑ Texas. Is that Angela?

Texas really their medical home efforts right now are focusing on how does medical home through the community center. What I encourage you to do, I know the Texas team they're great and they're social and they're fun, and they're also involved in everything they're doing. One of the things you can do by going to the medical home Web site. Every state doing something differently there's a team leader. If you go to the state page, I think you can contact Lisa Walker, who is the team leader for medical home in that state.

If you want to explore what your community health center can do, e‑mail her. She's got an entire team behind her looking at issues from financing, because community health centers are financed very differently. So what they are doing around that to make sure that since it's more of a wraparound service, things look differently than how you look at care coordination and financing in a practice. But I'd really encourage you to talk with them and hear about what quality improvement looks like for the groups they were working with.

UNKNOWN SPEAKER: That's a nice segue in terms of financing, which I think is always the elephant in the room in terms of how are we going to finance care and issues related to insurance. I'll let Meg put on her other hat, as project director for the Catalyst Center. Maybe you can spend a couple minutes talking about the new chart book.

MEG COMEAU: So I see some familiar faces from the champion meetings. I also see some familiar name tags because they're folks I just talked to on the phone and haven't met in person.

We conducted over the past year series of surveys with Title V program staff Medicaid program staff and Family Voices around innovative financing practices for kids with special healthcare needs. Compiled the information into a state at a glance chart book financing and care.

And we are just about to publish it. It's fixing to go to the printer any moment now. We're really excited about that. We think it's going to be the very useful tool for folks in looking at their own particular state.

There are actually two sections. One involves state pages. So there's some demographic information, some information about the child health infrastructure in your particular state. And then a list of things, innovative practices representative sample of three that you can know more about in your state.

We also think that these state pages are going to be a terrific comparison tool. So you can look at your neighbors. You can look at other folks who are doing similar kinds of things or who are facing similar kinds of challenges and it will help provide that opportunity.