AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
RICHARD ROBERTS: Great. Well, good morning everyone. It feels a little weird being way up here but they have to video so we can’t come down off the mountain here so we’ll do our presentations from up here but it does feel a little strange. What I’d like to do is kind of set the stage a little bit on what we’re, what we’re going to be talking about today and system change activities. And I know that you’re all involved in it in one way or another. How many people have Systems Change Grants with The Champions for Progress Center , the incentive awards? Does anybody have any one of those yet? Yeah, a couple do. We’re going to have another round of those coming up so if your state does not have one yet, I encourage you to think about it. When we think about, I’m going to be talking about leadership mostly and how that fits into Systems Change and the kinds of things that we’ve been discovering as we’ve been working with states with The Champions for Progress Center around leadership and the kinds of things that seem to be working and we’re going to go on this fairly quickly because we have a fairly full panel and we really want to spend time in the small groups.
First of all, I think one of the things that leaders do is not necessarily accept what’s the status quo, but when they see things that aren’t working or they see another way of doing something, they challenge the process and make sure that you understand why you’re doing it, what you’re doing, and what you’re supposedly getting from it. And by the way all of these overheads that you’ll be seeing today will be on the, both on the AMCHP website very soon. When is that going to happen? Who’s the, don’t we have any, Meg’s left. They’re taking the speed stick and putting it on there and they’ll be on the Champions for Progress website as well. I think the second thing that people who are leaders do if they’re doing what we would hope they’re doing is inspiring a shared vision from the people that they’re working, and working with.
You have, you challenge what’s going on. You get people to see things in the same way. You’re not out, you’re out there supporting, you’re out there enabling other people to do the kind of thing that they need to do to get the job done with that shared vision. And in so doing, you’re modeling the way as you’re going through it in a sense that you’re showing the kind of leadership that you would expect your people who are working with you to have. And you encourage the heart. And I think that this is one of the things that doesn’t happen very often in our programs that we work ourselves all to the bone and we don’t always spend the time to kind of celebrate the successes that we have and encourage the heart with each other that we have, you know, that we’re doing good work, that we’re doing what we need to be doing, and that in fact, we’re helping families.
When we talk with states, one of the things that came out of the last round of Champions meetings was that people felt much more encouraged by the time it was over. They came in I’d say fairly beaten up and left with a sense of feeling pretty good about what they were doing because they started talking to other states, getting a sense of each other encouraging them to move forward and they had a plan when they left that they were able to move forward on. So I think that this last piece is just absolutely critical and something that we do way too infrequently. When you think about Systems Change and this is just reviewing this, most of you people already probably know this, but you really have to think of both sides of this coin. You have to think about the definitions. You have to think about the outcomes you’re trying to achieve and what you’re trying to do.
But you also have to be able to measure your success with indicators and data sources and with the National Survey of Children’s Special Healthcare Needs, of course, we now have some data that we can start to work with, but you also have an incredible amount of secondary data sources that are available at your state level, which help you do that. But unless you’re doing both sides, you really can’t move the system forward, because the first part is the plan, the second part is how do you know that it’s in fact working. So we always think of both of those going together. You all know these two parts. These are, this is where our mandate comes from for Children with Special Healthcare Needs the system development, 1622 and 1623 from Healthy People 2010. But there’s also quite a long context in which that these initiatives have been in place. You can think back to Surgeon General Koop’s call to action for System to compare for Children with Special Healthcare Needs in the 1987 Conference, over 89 now has it written into law.
There was an article of Vince Hutchins and Merle McPherson wrote in ’91 that appeared that talked about this thing, Healthy People 2010 that we just talked about. The Olmstead Supreme Court, decision, which require services to be provided for people with disabilities in the community context. The President’s new freedom initiatives, which is the outgrowth of the Olmstead Supreme Court decision, which requires the same thing. No Child Left Behind, which has direct implications for Children with Special Healthcare Needs that are in schools, and then the current status of the CSHN Systems Development. So there’s really quite a history of Systems Change that’s been in place for some time. It’s not new. It’s something that we’ve been, we’re building steam and I think that we’re kind of starting to create a critical mass around over time.
When we think about what a system is, the way that we describe it is that it’s a comprehensive spectrum of health and other necessary services, which are organized into a coordinated network, organized, coordinated network to meet the multiple needs and changing needs of children and their families. So, it’s really the integration of all of those services. It’s not the individual services themselves, which make the system. When you think about a system to care for Children with Special Healthcare Needs, there’s a couple of different ways that you could think about it. You can think about it as we have for a very long time about the specific services for Children with Special Healthcare Needs and their families provided by individual agencies. That was a model that was in place for quite a long time. Or you can think about it as a separate reform effort for Children with Special Healthcare Needs and their families, but so that there’s an integrated service system for Children with Special Healthcare Needs but it doesn’t interact with the other systems that are out there. Or you can think about it, and this is what we’re moving toward, I hope.
A universal service system reform for all families using public and private support structures emphasizing family and child well being. I would say that most states that we’ve been working with at this point, are somewhere about here on this continuum. You may think about your state or your territory and think about where you are on that continuum. But instead, most states are kind of somewhere around in here, that they’re moving away from providing the services themselves and to the assurance role, but they’re still not, there are still quite a few things that have to happen in order to have that system for Children with Special Healthcare Needs in place. When we think about a system, we think about the six performance measures that are set up as part of the whole initiative. But they’re not just those six performance measures, because they interact with each other in various ways. For instance, you can’t have families or partners and satisfy without thinking about the other six, the other five, at the same time. I mean, what are parents satisfied that they have access to Medical Homes? That they get the screening? That they have the insurance, that the community based service system is in place and that their children are moving into adult life with an appropriate transition. So all of them work together and we’ve come up with a little thing to help people think about how that works and with a little luck, oopsie, all right lets go back. This is how we think it works.
UNKNOWN: Could you put your hands down? We can’t see.
RICHARD ROBERTS: Oh, I’m sorry. You’ve seen this before.
UNKNOWN: They didn’t.
RICHARD ROBERTS: Oh. So when you think about a system of care it’s really those six interacting with each other, not them by themselves, okay? That’s the point. One of my tech people put this together and it was, we kept trying to figure out how we could show that, and this is the way, this is how it came out. All right. So when you think about a system, you’re really thinking about the integration of all six of those. It’s not like this is just, you know, real simple stuff to do. Some of the principles are very simple, but the implementation of them, are very complicated and we understand that states are in very difficult situations. But one of the books that our staff has read and I’ve been giving copies to the Bureau is called Anyway and it talks about there’s never a time where there aren’t all of these challenges that are out there in front of you, but if we’re going to try to get some of this stuff done, we have to get started on it anyway. So we were thinking about five major challenges that impact us being able to be leaders and do the kinds of things that were in that first slide.
I think one of the things is, think about yourself and this is one of the things that we’ll be talking about today in some of the smaller groups as well, but think about the difference between management and leadership. I mean, one can manage a program very competently but are you leading that program out in the way that we were talking about it earlier. So there’s really two sides of that. Many times some of the programs and CSHN programs are very, very deeply in systems and it’s difficult for them to show leadership and the system may be requiring them to manage that program. But even within that management, you can still show the leadership skills. It’s not easy to implement Systems Change activities. You’ll hear of some stories of how that’s worked today, but I can tell you, knowing all of these programs that people are talking about, this is hard work and it takes a very consistent steady pressure on the system in order for it to change.
It doesn’t do it by itself. The idea of inertia, and it staying where it is, as what it wants to do, is very clear. Nobody has the resources that they need to do this. That’s a given. And it’s kind of one of those things that we probably never will, but that doesn’t mean that we can’t do some things. And for probably the last 20 years, one of the things that we’ve been studying and working with in a participatory action research model to change it, it’s the lack of connectivity across individual supports that the system’s level. That is that it’s very difficult to get education and health in the same room all the time. It’s very difficult to get early intervention and another program working together sometimes. In our state it’s taken, you know, about 10 years to get early intervention and daycare to talk with one another, which like duh? But it’s still one of those things that, you know, people just don’t think about. So, the inertia to keep thing separate is very strong and you have to do something to jerk it in order to create that connectivity across the individual supports.
And then finally, we all have to recognize that, you know, communities and states are broke, but again, there are things that we can do that will make this happen. So there are some very formidable challenges in the way of leadership and in Systems Change but yet when we think about working with the families and having a system with care in place, there are still things that we can do to move it forward and you’ll hear a number of examples of that today. How you can make it happen? We have a four stage process that in the Champions for Progress Center we’ve been working very closely with states in implementing this and I think they’re finding it makes sense and it helps them to kind of continue to think about where they are along the way. And I’m not going to spend a lot of time about it, but we’d be happy to talk with you later, but it’s kind of just a logic model. You have to have your partnerships in place and this of course, is a very iterative system, you don’t have them all in place right away, but you work with the ones who will work with you and then you continue to add more people to the system as you can. And you’ll hear examples again of how this is going to be happening today.
Develop a plan that you’re following. One of the things that we required, we asked states to do in the multi states meeting was not to create a new plan, but to think about the plan that you have now and continue to implement that plan and continue to modify it and make it better over time as you get experience, so that each time you come to a new meeting you don’t need a new plan. What you need to do is see where you are on it. Implement them at the community level so that you can really feel in a community that there is a Medical Home for children in there, that families feel satisfied, that there’s an integration of the services at that community level. If it happens at the state level, but it doesn’t happen at the community level, it’s not going to work. Measure as I said, the two sides of the coin, measuring and monitoring your progress along the way, and when you get to the end then, you are working on a community based system of care.
There’s a number of ways that states have been telling us that they’re doing the partnerships, buying in for partners through statewide coalitions, building effective partnerships with families, building interagency collaboration at the community level, building funding systems including partnerships with insurance plans and others. All of these things are things that states have been doing and are, you may be doing as well. I’d love to hear some of those examples as we move along. When we talk about participatory action models of research, it, what it says is that in order to do Systems Change, you have to have all of the players at the table because if you don’t have one section of that it’s not going to work. So you need consumers and Family Voices. You need program staff, people who actually implement the program and you need some people who can do that evaluation for you and help you think that through what the data mean and setup an integrative process there.
So when you’re moving it to the community level, families as decision makers are incredibly an important part and states are also then doing things like optimizing community level responses to meet transition needs, which has been a very big issue. And on the incentive awards that I passed out a little while ago, you’ll see a number of the states that are doing that. You have the contact information for all of those incentive awards and you’re very welcome to call them, email them, whatever, and get the information of what they’re doing and how they’re doing it. Care coordination has been a huge issue at the community base level and we certainly don’t have that worked out yet.
When you’re measuring progress, thinking about the state level data that you have from the national surveys and then what data sources you’re collecting, caps or other things that you have in your system that will tell you how you’re doing in a more systematic way and not with the large breaks like you have with the national data set. Incorporating the performance measures into the CQI process that is happening in your state so that as you’re doing that continue with quality improvement, you’re looking at each of the performance measures as part of the system. Pardon me. We have a lot of information on this last one, how to evaluate community based programs. You’ll hear some of that today. And if you’re looking for some examples of that, we’ll be happy to talk with you some more about it. So let me close my part to saying, one of the things that we’re trying to do in the Champions Project is to push the envelope and as this slide says, we’re pushing the envelope, how about you? So one of the things that we’re going to be doing today is kind of helping you think that through a little bit and move forward.