HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Building Partnerships Across the Lifespan for CYSHCN

RICHARD ROBERTS: Hi, I’m Richard Roberts, I direct the Early Intervention Research Institute as she said and we’ve had the privilege over the last couple of years of having the Champions for Progress Center at our institute which is Maternal Child Health Division for Children with Special Health Care Needs National Leadership Center for Children with Special Health Care Needs.

We’ve been working with states across the country with respect to building a system of care, helping them understand what that system of care is about and what it means to have a system as opposed to individual things that are working independently. I have to say that it has probably been one of the joys of my life putting this together and working with the states on it because the states have so much enjoyed working together in a community of states with respect to their partners. Together with one another in figuring out what all of this really means and what are the best strategies to use to move it forward. The way that we have done that is working with them in a very, very basic continuous quality improvement model, which is not, I mean this is absolutely not rocket science. As Jennifer tells me frequently it is much harder. Actually it has worked very well in the sense of getting states to think about both where they are now and where they need to go with respect to the systems building effort. What are some of the steps and what are the partnerships and the measurements strategies that they need along the way that they need to be able to track their success and get a sense of what they need to do next. In earlier work with states, one of the things that it was somewhat of an epiphany for many people at the community level and the state level when you start talking about a continuous quality improvement model and how that can really work to help you move along over a long period of time and understand where you are. So just kind of having a framework for them to be able to move forward has been an important part in itself. One part of that which is very important of course is what partners do you bring.

So in the model that we’ve been working with states, I’m going to go through it fairly simply and fairly quickly with you but it is really a four-step model. Starting off with what is the goal that you are trying to move toward. For some of you that have worked in this area before, you may find these simplistic. In fact when you are working with communities and state groups once they get through some of these very early stages they are really able to take off and run but in doing types of things like in thinking about goal what it is that they trying to achieve? Can you define it, can you measure it? You know being a psychologist by practioners models I was trained if you can’t measure it, if you can’t define it you can’t do anything about it.

In this case that is the same kind of thing so you have to be able to really define it in an operational way that you can then measure it. One of the things then that we have done with states and communities in helping them with CQI model is to do that particular part. Really nail down what it is that they are trying to see at the outcome either distally like two or three years from now, five years from now, in a couple of months what would they see as the outcome and defining it in such a way that they can actually measure it. We talk about a four-stage process in doing that and we are doing this around an idea of a community-based system of care. Let’s see if this is actually going to work. You have to use the mouse, that’s fine. Building partnerships, who are the partners? We’ll talk about that in a couple of minutes in a little bit more detail but in some sense one of things that because we work in such a columnar way so often, thinking across lines the most obvious partnership is of course is working with families when you are working with Children with Special Health Care Needs. Or the recipients of the service, instead of making them simply recipients of the service working with in partnerships and creating what that service is about. So the partnership part becomes incredibly important in that respect.

The second stage in all of the models that we have been working with is really developing a plan. I don’t know how many of you were at the multi-state meetings but there was this character there called “Dr. Dick” who talked to the group about making only one plan and that it shouldn’t be a plan for social services it should be a plan for families, a plan for the pediatricians. But rather when your thinking about a state plan, trying to kind of integrate those parts together so that you can see the parts moving forward as a whole and that’s when we worked with both communities and when we worked with states has been a very important part of what we’ve done.

The third part is really implementing that at the community level. It’s not good enough and it doesn’t work when you implement it at the state level or at a family level but the communities where most of these things really happen over time. So getting it down to that level becomes incredibly important. This is actually a month long course that we teach and we are going to do it in fifteen minutes.

The other part of the Continuous Quality Improvement Model is that you have a way of monitoring and measuring your success along the way. That, of course the national data sets from the national survey give you that first base line but you have to develop your local measures in order to be able to move it forward because that survey has been done again and the data won’t be available for another couple of years. It will not help you with your particular project in the sense that the time lag is too long for you to really be able to see whether what you are doing is adding to that progress over time. So figuring out a way that you can measure and monitor what you are doing as part of the goals that you set in your plan becomes the important part. So building partnerships, having a plan, one plan preferably if this can done, implementing it at the community level and measuring your progress along the way in fact then leads to a community based system of care.

So in doing that you ask the question to yourself strategically whose help do we need to get there. One of the things that we usually do in that respect is round up what I call the usual cast of characters. People that you know that are friends, that you know you can get into the room and they won’t kill each other. They’ll talk to each other and be civil and be nice. There are people outside that group who in fact probably hold quite a bit of power with respect to what you’re trying to do. So unless you can bring in both the usual suspect and the unusual unexpected suspect you probably will have a less successful outcome if you don’t get those unusual suspects in. The other things that we challenge the states and communities when we work at the community level as well is to think about people who power in the area that you’re trying to work with.

Can you get them to the table with you? What would it take to get them to the table with you? Because if they hold a chunk of the power and they are not in the decision making process they can hold that power in another sort of way in making sure whatever you’re doing either by neglect or by purpose doesn’t happen. So making sure you have the people you normally would expect but then well beyond that thinking about unusual people. For example insurance agencies who work with you might be one example. What are some of the other examples that we are citing that we got? Sorry? Yeah go ahead.

UNKNOWN SPEAKER: I have a question about that since we have limited time, in terms of getting business appropriations to the table. Any hints you’ve got about how to make the selection?

RICHARD ROBERTS: Sometimes any door will get you started. It doesn’t, you don’t have to be married for life. This is not a life contract when you invite somebody to the table. You may have some conversations with them a head of time to see whether their interested, to see what they might be able to offer. Do they see an connection between their doing and what you’re doing? Can you see a connection between the two and then invite them in. Business partners are a great idea because they often times the health programs that have as part of their benefit packages and they want to know more and they want to have input with respect to how that is actually working. What are the cost consequences for them and what does it mean to have a number of families that have Children with Special Health Care Needs as part of their employment and what do they have to do in order to keep their good employees who also have these things. So thinking about the benefit for them as well as what they can give comes as one of the solutions that some of the states who talked to us about that worked.

UNKNOWN SPEAKER: Just a real fast comment seeing how the time, with our Early Childhood Comprehensive Grant in our city, we and I’m going to read how it is before. We are having trouble with one very important state agency that has a capture on children, age five to eighteen, so you don’t know what age its in. One of the strategies to deal with the issues you just suggested is to get businesses at the table. But the downside of that is you’ve got ongoing relationships with these other departments in other areas. I’m really frustrated in terms of trying to get a consensus even within our own agency on how best to deal with this issue.

RICHARD ROBERTS: Little things like making sure the people of that particular agency are getting all of the minutes, that they’re at least being kept informed and seeing the kinds of things that you are dealing with. Sometimes we’ve found that going outside the system for levers has worked better than trying to stay inside the system. So you may want to think about that as well because the power within may not be enough.

UNKNOWN SPEAKER: I was going to say asking families to invite those individuals sometimes is the thing that gets them there because it looks a little less politically correct.

RICHARD ROBERTS: If you had a Jennifer in your town or a Polly Rangel in your town who went to those agencies and said, “You know my kids are in your shop and their shop and I’m really tired of you guys not talking to one another. Now what can we do to work this out”. It stays out of your frame. I don’t know if you’ve tried that or not.

UNKNOWN SPEAKER: We have pacer in our town so it really not (inaudible) and again it’s taking up too much time. It’s just really, really a significant issue in terms of short, mid-term and long-term relationships among these agencies on multiple issues that face kids with special health needs.

RICHARD ROBERTS: See, the other thing to do is go to the governor.

UNKNOWN: SPEAKER: That’s what I was going to suggest. We’ve got mad in Texas many times.

RICHARD ROBERTS: So just think who can help you get this done and in the model we started with when we worked with those fifty communities, we don’t try to create the absolute perfect team. We start with what’s there and we work from there. So you can always say we won’t get started until we get this one player who is the hold out to the table but that may also be two years from now. So what happens to the kids and the families in the system during that period of time? It will be incomplete, it will not be perfect but it will be moving it beyond where they are right now. You’ve started to develop other kinds of relationships which will be independent whether the hold out is there or not. Thinking about faith based organizations, thinking about the business community as we said,

Chamber of Commerce, a lot of those can bring other resources and support to the table that is somewhat unusual. We have as one of our panels at the Champions meeting had to do with the unexpected partners and these are the examples that came up from people who were in the room that we are using. Whatever help you might need to have a community or state level agency, somebody has to staff it, somebody has to have the fiscal responsibility and somebody has got to find the money. All of those are very big challenges for both community based and state teams. If you have the buy-in of the directors of the various offices sometimes they can find money and some of the other agencies in the group. In each community we worked with in the state somebody has come up to the table saying that they would do that. We don’t solve it for them; we force them to solve it for themselves in making connections to new groups beyond the agencies.

Thinking about the kind of work that Wendy has been doing with the National Center on Cultural Competence and thinking through when there are populations of children and families who are somewhat out of the mainstream or you don’t have the right connections to get to them because or for them to get to you because of cultural differences and/or economic differences. Thinking about using cultural brokers to help bridge that gap so that the dialogue can begin has been found to be very effective when appropriate methods have been made to make some of those connections. We don’t always think about that. We usually think about would you ladies know to come to meeting. What are the barriers that make a reality? Sometimes having culture brokers who do the conversation with you or for you at least in beginning over time helps to bridge those gaps and then to make it easier for groups to work together. Have I appropriately explained that well enough? When you have the expert in the room when your talking you want to make sure you’ve kind of gotten it pretty close but that’s how I see it working. Actually one of my big jobs was to develop a whole pre-school 0 to 5 program for native Hawaiian children, in Hawaii when I was living there for a long time. Being the white (inaudible) I had to use cultural brokers all of the time in order to talk with the Hawaiian community. There were certain kinds of things I could particularly not talk about with that community to make it work.

What would a plan of action look like? Thinking about the organizational issues, who’s in charge, whose going to take this plan and move it forward? Who are the partners, how is it going to be organized? Is it flat structure, it there another kind? What are the benchmarks that you are going to be using to know whether or not this group is doing what it needs to do or not. So very importantly in the plan that you are putting together that in fact there are to do’s with dates, actual dates attached to them that have to be done. So that people can be held accountable, that the group can be held accountable for moving the plan forward.

Some of this sounds so very simple but when you think, our work with communities I would say that for most of them many of these points were a little bit on the revolutionary side in a sense in the beginning. Once they started working with it it was like well of course! Several of the committees I’m involved in in Utah for instance, people come not expecting to do something. They expect to talk, information exchange but they don’t expect to do something.

I personally don’t go to a committee anymore unless they are going to have in their charter and their sense of what they are about that they will affect something in the state.

How would you know when you arrived? Ask yourself questions like how integrated were the services and support at that level. Is their accountants, do people talk to each other. Are there formal agreements? Do data drive the decision-making and who is not at the table but should be? There are kind of intermediate things that you should be thinking about in putting it together.

Oh gosh, this takes 20 minutes to explain, we’re going to skip it. The point of this slide however complicated it may look is that this is a community who was working who we were helping. They actually became a community (inaudible). When we began working with them or before we began working with the fee schedule where their agencies collectively were with respect to these kinds of variables. Their partners, their shared goals and missions, their connections between task force and state agencies. After about a year or two of working this is where they were, this represents where they thought they should be but they were able to pull together move. They never decided to kind of let’s figure out how to make each one of things over. Rather what they did was to look at these things up here. What their goals were what their outcome and accountability was and they figured out how to get these things done and as they got these things done, these things moved.

So your lesson from there is if your working with communities or state teams don’t worry about the integration strategies worry about the outcomes and how your going to get there and get the partners involved in that part and the other part will take care of itself. Amen. Thank you.