AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
DEBORAH ALLEN: This is, that’s Ava, for those who, she’s a child who walks around surrounded in an aura of power point presentations, since an interesting developmental phenomenon. Good morning everybody. I’m going to be talking about both the process and the outcome of grant as Lynda said related to financing a system for care coordination in Massachusetts. And there’s a theme to this presentation, which I will raise at the beginning and come to at the end, which is that even when times look bad, you know, I think it’s Woody Allen who said being there is 50 percent of the problem. And so a sort of bureaucratic addendum to that would be being there with a plan is 50 percent of the problem in bureaucratic situations. And what we’ve gone through is a process to develop a plan for care coordination and its financing and have suddenly found ourselves in the unusual situation of an opportunity by which it may actually get implemented, which is pretty amazing. But it wouldn’t be the case if we didn’t have the plan. For those of you who were trained as I was in maternal and child health, from day on they tell you the story of Martha Elliot. Martha Elliot is the mother of Title V, which is what funds maternal and child health.
And the story is that at one point when Roosevelt, President that is, was developing the Social Security Act, he walked into Martha’s office and she said, “Are you going to do anything in this act about mothers and children?” And he said, “Whatever.” You know, sort of in his Boston accent, “No I don’t think so.” And she said, “Well, I have the language right here and if you just slip it in, there we are.” And apparently that’s how we all came to be here in this room. So, so, that’s, I mean, that’s a little grandiose, but the theme here really is to sort of think big and think about a plan that really meets the needs of families and then let them negotiate you downward. But don’t start small and go down from there. Let reality interfere after you’ve aimed big and that’s, I hope, what’s going to lead to a positive ending of this in Massachusetts, but first, the nitty gritty. I’ll talk a little bit about the background of our proposal, what our consortium is, what the process it used to come up with our proposal is. Then I’ll give you some details about the system that we’re proposing, both what it looks like at the ground level in a doctor’s office, which is where it’s housed, and also how it would be organized on a statewide level, because the idea here is to have a system that will really be available to all children with special healthcare needs in our state. And then I’m going to talk about next steps including what this opportunity is that I mentioned that really seems like a chance to get this to happen much more quickly than we ever envisioned.
So first the consortium, the consortium is a multi stakeholder, very broad group in Massachusetts that first formed formerly about six years ago, seven years ago now. It includes about one third parents, a large number of providers, some representing provider groups and some coming on their own who take care of kids with special needs. Very importantly it includes payers, several of the larger managed care organizations in the state are represented in several cases by care coordinators who have some leadership role in their organization and another case by a physician. And then it also includes state agencies and we’ve tried very hard to bring all the state agencies to the table. There are two of them, Department of Public Health, and the Department of Mental Health that are actually represented on the steering committee. And I have to admit, acknowledging that the building of the consortium itself is an ongoing struggle that we have not been able to get Department of Ed involved. And that’s, that’s a real gap. But just to give you a sense of the context from which this proposal comes. And Bior, you have the overheads that have these slides in more detail so you can read a little bit more about it. And I’d be glad to answer questions.
I should actually also say that another member of the steering committee is in the room whose in the audience and can participate in the discussion as well as one of the very active parent leaders who are both people at DPH. So the consortium in doing its work tried to think about, its goal is the achievement of the six outcomes for children with special healthcare needs that are part of Healthy People 2010 and of the President’s new freedom initiative. And in thinking about what are the strengths and weaknesses of our system in Massachusetts, using those as the standards we’re trying to achieve, one of the issues that we confronted was a strong sense that care coordination is absolutely key as Lynda said and that that’s one of the big gaps is that it’s available on a very spotty basis. I actually, in order to be able to prove that to people because so many people have the illusion that all families with special healthcare needs kids have care coordinators and in fact the problem is duplicative care coordination. And, of course, there are some situations like that where there are different care coordinators from different systems fighting each other. But we wanted to show the reality that there are lots of kids who get nothing and that even if the kids have multiple care coordinators, there may be no one who is really seeing the family’s needs as the thing they’re concerned about. They may be much more functioning as gatekeepers.
So one of the first things the consortium did is a little report, which I’ll pass around. This predates this grant but was the sort of foundation for the idea that there are real gaps in the system. So that was a very important step was being able to document that. Care coordination is just one of the goals of the grant that we got. I’m not going to talk about the others, but it was really a grant looking at financing as a whole and recognizing that one of the biggest service gaps in the state was a financing system for care coordination. And we’re now in the final year of that grant, so what you’re going to hear about is what it’s done and where it’s gotten us to. The first thing we did in order to act out, act on our part of the grant looking at care coordination was to establish a work group that replicates the diversity and the sort of multi stakeholder perspective of the consortium itself. And most importantly I want to mention that several of those care coordinators from managed care organizations who are part of the consortium were on this work group. And what was very important about having them engaged in the process all along the way is that it ended up avoiding a situation where we could seem to be accusing them of being inadequate. That there was a lot of respect for what they did, but bringing them along step by step about what are we trying to achieve with care coordination?
Is there a system out there that does that? Made it something where it wasn’t an accusation against them for not doing enough, but a recognition that their job description is not the job description that we’re looking for in the broadest sense for children with special healthcare needs. So they’ve been a very positive force in the process. The other thing that I want to mention that’s been very important is that there have been a couple of, there have been a number of parents involved, but a couple of particularly thoughtful articulate parent leaders, including my co chair who couldn’t be here but is really sort of the co presenter of this in spirit. Her name is Cathy Ryan and she is both the mother of a young man with very complex needs and very importantly, she also works for our State Department of Mental Retardation as a care coordinator for kids with complex medical and mental health needs so that she has sort of both sides of the picture very clear in her mind. And she’s also just one of the sharpest people I know. So at a few key points, really what’s happened is she and the other mother who are particularly active in this group have said as real sort of fundamental questions, well, what you’ve learned about what’s out there is very nice. That’s very interesting. Does it really work? Let’s ask families.
And that’s made us each time we’ve learned something, go back out and ask some sharper questions and really get a sense of what it takes to have a system that we feel meets our needs. The key steps in the process that we’ve gone through were an initial summit where we brought people together and discussed very broadly what we thought we were going to be looking for in a system. And that, was really to get buy in and get people knowing this was going on, make them aware we’d be coming back to them and get some initial parameters to find. A couple of data collection strategies, one involving key informant interviews with everyone we knew in the state who was doing pair coordination and then this is one of those points where the parents said, “But wait, is it real?” Because when we did those key informant interviews what we heard was that everybody had a system that in at least theory could do almost everything you wanted it to do. The one exception to that was anything involved going out of the office. So admittedly, the systems that existed didn’t do visits to schools with families, didn’t do home visits. But what we ended up finding, what we did was we took this list of sort of possible activities of care coordination and went to all of these people who did it and said do you do this? And they all said yes to everything.
And the reality check was well, yes, in theory they can do all those things, but what you really want to know is what do they mostly do? What’s their job description? What are they accountable for? What are they going to get fired if they don’t do? And the, in particular meeting those community needs that Lynda mentioned in her presentation from the grantees reports is what didn’t really get done by these people who worked in various kinds of medical settings and managed care organizations. So here is what our work group ended up finding after this kind of couple of years of doing an investigation of what’s out there and figuring out from that both what we want and what’s missing. Well, first that there are lots of models out there, that the differences among them partly because of language, and I think partly, I think part of the reason it’s hard to figure out that lets say the managed care organizations and various hospitals that provide care coordination, part of the reason it’s hard to figure out that they’re not doing everything we want done is that the people who do those jobs are incredible decent, hard working people. And they try really hard to stretch their jobs to meet family needs. So they like to think they’re doing everything and they sometimes do a little bit of everything but fundamentally they’re not doing everything.
And what we found is when you really go out and look at models, and that’s what we ended up doing is site visits. You find out there are these real gaps. So what we decided we’re looking for is a model that is comprehensive both in terms of serving all children with special healthcare needs as the need the service, not based on diagnosis, not based on severity, but based on need. We want it to be defined as a family service. That is we ended up, and I will come back to this, wanting it very tied to the medical home, but wanted to make it very clear that the client is the family and not the doctor, because there, although there is a lot of overlap, if you draw the circles of what those two sets of needs are, there’s a lot in the middle where they overlap. But when we really examine what doctors were looking for, a lot of it had to do with easing the paperwork burden on them providing complex care for children with special healthcare needs. What families were looking for, of course, had something to do with making it easier, too. But it also had a lot to do with dealing with needs that the doctor never encountered and in many cases knew nothing about.
But it even more subtly had to do with the sense of having a real ally of their own, a person who was in an emotional sense as well as a literal sense, there for them. And that was very different from having somebody who worked for the doctor and who could be snatched away if you needed an extra person to fill in some other row in the office. But that was an important distinction to make. So this emphasis on the family service, but we wanted it housed in the medical home and there was a lot of discussion about that within the group, because and particularly in the broader consortium, there are clearly some families whose main struggles are in the educational venue. And who if you ask them, where do you have the hardest time getting things coordinated would say, in education. So one possibility was saying, well, you should have care coordinators in the educational setting. And the other thing, of course, is that all families have an entitlement in education and families don’t have an entitlement to services in the medical setting unless they happen to be on Medicaid and that’s only some families. So the third possibility was, well, don’t tie it to any system. Have it as an independent, free standing, which a lot of states do and our own state did historically. You take it outside of those systems.
What we ended up feeling based on a lot of very intensive discussion was that you wanted it in a place where first of all doctor’s people have from the time their children are born so that there is, you know, school doesn’t start until later than that. You want it in a place where families already are. That if lives are complicated and you’re trying to simplify it, then creating a new system that’s outside where they have to be just makes their lives that much more complicated. And it doesn’t give them the clout of the physician to back up what the care coordinator is working towards, that there’s a real synergy between the care coordinator working for the doctor, working for the family and the doctor’s social clout with organizations. So being able to call and say, I’m a care coordinator working in doctor so and so’s office is stronger than not being free standing. And the main thing we felt is first of all, nationally the AAP is arguing for care coordinators, the Academy of Pediatrics for care coordination in the medical home. So there are sort of two sets of goals coming together there. And for the most part, when schools were counter posed aside from their not being available 24/7 year around from birth on, families felt that their relationships with schools are frequently so adversarial that the idea of really relying on someone in the school even if you liked that person, that for example, there were families whose kids had conditions that they wanted kept confidential and they didn’t want the school to know what it was.
And you think about a family with HIV. They have a choice about whether or not their school knows the child’s diagnosis and they wanted to sustain that choice and they would have had to choose divulging that versus the service if that service were housed in the school. Where as presumably the doctor’s office already knows that stuff. So that was a very important decision. But at the same time, the group felt strongly it needed to be tied to a broader system in order to insure that it wasn’t just somebody working for the doctor and that there was capacity to improve the system as a whole based on what one learned working for an individual child. And then the final thing that we came to a conclusion about that was quite controversial and to some extent continues to be, is that we didn’t feel it needs to be a nurse. And frankly we felt that if you tried to make a system that we thought it could be a nurse, I mean, the kind of model we had was it could be a nurse whose a social worker want to be or a social worker whose a nurse want to be or an early childhood educator whose an either want to be. Or really a person who has sort of a key set of skills rather than a particular kind of academic training. And part of the rationale for that was simply cost. And that’s not because we wanted cheap system in the sense of a poor system. But because we want a system that really does have capacity to reach a lot of kids. And we felt that to the extent that you need nurses, it’s really to do medical stuff for which nurses should be being reimbursed as nurses.
So if a nurse wants to do this and get paid as a care coordinator, we though that would be great. And I think there may be some roles in the system on a sort of macro level where you need nurses for working with certain families and to certain situations but that that should be sort of a link but somewhat separate question from the capacity we’re trying to design that’s statewide and universal. We came up with a definition of care coordination and like other pieces of literature developed by committee, it’s not the most mellifluous, but it does hit on key points. I’m not going to read you the whole thing. You have the attributes, the key components of it in front of you and I’d be glad to give the actual wording to anybody who’s interested. But the main point, I think, is its emphasis on being family focused on the family as the partner, the family as the client, the goal of enhancing the family’s capacity to deal with the system, both be coaching the family but also by helping the family. We are not adverse to, I mean, the sense that families really do need assistance in getting through some really significant barriers is very important to this definition. Principles we felt, these are all representative of elaborated lists of components but that it has to be broadly accessible both to all children and at all times, highly individualized, allied with the family and that’s this point about, yes there are needs that the doctor has and we want to acknowledge those. We want the system to work well for providers but the family is the client.
And this point that I think came out in some of what Lynda mentioned, that part of the goal has to be improving the system and not having an army of care coordinators who are dealing with the same stupid glitch daily in a hundred different doctor’s offices. That if it’s a stupid glitch, part of having those, part of the value of having those people present should be to float up to the systems level, which means tying them to a systems perspective. Outcomes we felt, and these are hierarchical, should start with improved well being of the child. And a focus on helping the family through anticipatory guidance and ties to appropriate community services, advance the ultimate goal of the child growing up with capacity to be autonomous in their community, family satisfaction because the family is taking care of the child. The family is in many ways the best orbiter of what is going to produce good outcomes for the child, but the family as the sort of beneficiary following from this focus ultimately on the child. Provider satisfaction because is providers are not willing to participate in the system, if it doesn’t to some extent make their lives easier and their work more satisfying, they will not want to have care coordinators in their offices helping families, and then finally as I mentioned, systems improvement. And we envision a process that has a number of steps in working with families, starting with a scan of the community.
So the first job of the care coordinator is to really know what’s out there, what works, what doesn’t, who you have to talk to, to get something to move when it’s not moving. What day you should call the office of your community recreation program and get the person in a good mood. All those details that good care coordinators know and can share with families to make their lives easier. Then moving on through direct work with the family, screening, development of a care plan, but ultimately coming back and closing the loop with feedback to the system about what works and doesn’t. That’s what goes on at the micro level in terms of the care coordinators role in the doctor’s office. We are also though thinking about what’s happening at the macro level. And that includes thinking about how the system’s financed, how it’s structured, and what its operational components are. In terms of financing, let me actually go on to the, this is the high point of my lifetime art with power point, so I hope you appreciate it. The green boxes on the top are payers, appropriately green, of course. The oval in the middle is the Department of Public Health and I’ll explain these roles. The pink squares are vendors, which would be private organizations in communities around the state and the stars are care coordinators falling into this great kind of orange pool of medical home at the bottom although that really should be different doctor’s offices.
The notion that we have in mind is to prorate contributions to a pool of funding from all payers and to mandate that. To mandate a system of payment by third parties, which is a model we’ve developed for early intervention in our state with tremendous success after some initial griping by the payers and that includes both public and private payers, so Medicaid as well as private payers. With some additional state funding to the Department of Public Health to serve as payer of last resort for kids who have no source of insurance who are not paid for. Otherwise, or as I’ll mention in a second, just sort of fill in gaps in the system. That money going out to vendors and here’s this point about having the care coordinators in the medical home but tied to a broader system is that rather than give the doctors money to hire somebody, partly, the biggest argument against that from our perspective is that doctors have very uneven needs in terms of the size of their case load. There are some communities where there may be three tiny practices with small numbers of kids with special healthcare needs. So the idea of having vendors involved was that you could divide one, you could either have several care coordinators in one very large practice or one care coordinator spread among several practices with some limits because they have to have an intimate relationship with the practice.
But the idea is the vendor system could be play that kind of equalizing role across the state in addition to which part of their job would be to tie the care coordination system to a set of standards developed at the state level and overseen by the Department of Public Health. So that’s what the model and its financing ends up looking like. One of the big dilemmas for us, of course, is given the new opportunity to pay for care coordination through the CPT code that Lynda mentioned, is that ideally you’d like to be able to, in the case of Medicaid, draw down federal dollars by having some sort of unit rate that allowed you to bill and to capture federal funds.
And we don’t feel, I mean, I think, I think there’s got to be a real discussion about whether we’re ready to go for, to a unit rate with a system that we feel needs to be able to be incredibly flexible in the way it serves families, so that it might need to serve, to spend, somebody might need to spend two days solving one problem for one kid and then see lots of people for ten minutes. And so questions about capitation versus unit rate exactly how to pay for it on the individual kid level for the care coordination is something that we need to work out but those are the questions that we’re thinking about. And then a lot of responsibility for quality assurance at the DPH level, at all levels of the system both in terms of certifying individual care coordinators, overseeing the vendors, and assuring that DPH is meeting its own performance standards. Both processed standards like making sure vendors get paid in a timely way so they want to stay in the business, but also in terms of thinking about outcomes of the system along the lines that Lynda mentioned. So now to where we are now and what this great opportunity I mentioned is. We’re in the process of as I said just now, refining what this system would look like and particularly the financing. We’ve got great buy in from the members of the consortium but really have to do a lot of marketing of this.
And our expectation was what that the grant would end and we would be marketing it for at least a few years, trying to build support in the state legislature, trying to really engage the payers on a deeper level than just their representatives in the consortium. But then this really interesting opportunity arose, which is that families of kids with serious emotional disorders sued our state and they won. And the decision that the court just came to, this is a very recent outcome and I really encourage those of you in other states who think of Medicaid as a wedge to shape the system, to really think about this suit. It was a suit in federal court and very, very thoughtful decision by the judge. I’d be glad to send it to anybody who is interested. And basically what the judge said is that if you look at Medicaid regulations, everybody acknowledges Medicaid will stipulate to this that care coordination is a covered service under EPSDT, which is the Medicaid benefit for children. And that what it should entail is regular contact between child and family, application of diet screening basically, formulation of the care plan and responsibility for implementation of the plan. Well, you know, scratch your head. That sounds a whole lot like what we’re saying care coordination ought to look like for all kids with special healthcare needs. And the court went on to say a lot about children with serious emotional disorders. I won’t go into that.
The point that was so interesting to me is that the court recognized how broad the Medicaid benefit should be for children with special healthcare needs and is holding the state accountable. I just want to mention here as an aside and again, anyone who is interested I’d be glad to share the judge’s decision, which is really, really thoughtful, is that it wasn’t that Massachusetts had the perfect study of care coordination available to hand the judge and look, say look, children die if you don’t provide it, so you’ve got to do it. The judge listened to parent testimony. He drew a sample, a random sample of cases that Medicaid provided to the court and said, these are kids who are clearly, these families are having tremendous difficulty getting the services they need for their kid. They’re covered by Medicaid and you’re not really doing all the things that EPSDT implies you should be. So based on information that is readily available in other states, the court came to this decision. Well, where that connected up with us was that as we’ve been beginning to do outreach around our care coordination proposal, we encountered, we talked a lot to families of kids with mental health conditions.
There is an organized group in our state of families who are very active, part of the consortium and we had good relationships with them and we ended up getting connected to the plaintiffs in the suit. And the lawyers for the plaintiffs told us that the judge was going to look to them to come up with a remedy and they were tremendously excited that somebody in the state had a plan for what care coordination ought to and could look like that they can offer to the judge. And they said, well Medicaid can, of course, the state can, of course, disagree with it but then we have something to negotiate about. We have a starting place for what the system ought to look like for kids with special healthcare needs starting with the children with serious emotional disorder. So, where we are now is working with the plaintiffs in that case, continuing, recognizing that the negotiations may be such that are proposal gets very much whittled down, but also trying to continue our outreach to other key stakeholders including legislators.
And I want to make a final point about that, which is what I think we all need to do in order to win care coordination for kids with special healthcare needs, and that’s, I’ve been thinking about, you know, times are rough. I am aware of that and it is hard to be optimistic when times are rough and to think about system expansions. Our estimate is that at the very cheapest, the model we’ve described would cost, given the size of our state, about 20 million dollars in Massachusetts but frankly, that’s by coming up with the lowest possible estimates I could for anything in the system including like how much you’re going to pay care coordinators and I really would like to pay them enough to eat. So 20 million is an under estimate but it’s not a gross under estimate. And, you know, that sounds like a lot of money, but interestingly in recent years, even with hard times, our state has passed a couple of programs for kids with special healthcare needs, a respite program for a million dollars and a brand new program for families of kids with autism for three million dollars. And it strikes me that the reason those programs got passed by our legislature is the legislature was convinced that the families who needed those services needed them desperately, desperately.
And I’m beginning to think we haven’t made the case that families of kids with a rage, and the reason for this court decision and the reason I think it’s focused on kids with SED is that system is a particularly disastrous one for families and there’s a lot of public acceptance of the idea that those families are in crisis if they don’t get the services the court ordered. The court was convinced of that and I think it resonates with the public. And I don’t think, I mean, it’s interesting because when we talk about care coordination and think about the challenge in our state, you tend to focus on the money on persuading people to spend the money, I’m thinking about sort of the bureaucratic parameters of the system and they are all important. But fundamentally I think we can get people to act if we can make the case, that this is something families desperately need. The problem we have is that families are so resilient that they absorb the burdens involved in caring for kids with special healthcare needs and we have to make the case that we should not be doing what we used to when I went to school in Public Health called Falling Bodies Epidemiology. That you only make the case after you’ve pushed people to the edge. So I think that’s a challenge we all share, but a really fundamental one to winning on any of these systems on a large scale. Thank you.