AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
ARDIS LEE OLSON: I’m very excited to be here to represent a partnership between New Hampshire and Vermont. We first began the Partners in Chronic Care Project in New Hampshire.
UNKNOWN SPEAKER: Maine.
ARDIS LEE OLSON: Huh?
UNKNOWN SPEAKER: Maine.
ARDIS LEE OLSON: What did I say, New Hampshire.
UNKNOWN SPEAKER: Vermont.
ARDIS LEE OLSON: I’m sorry. We’re not doing anything right now with Vermont, they’re in the future. They haven’t seen the light yet. Who’s here from Vermont? I’m sorry. We say those words too much. Partners in Chronic Care is really an applied model of a family centered care coordination approach for children with special health care needs and represents the efforts of the Hood Center, (inaudible) and Blue Cross Blue Shield of both New Hampshire and Maine, New Hampshire and Maine Title V programs. This program began; remember in those old days when we were going to have healthcare reform? And we were going to, everything was going to change and we looked across the table and we said, well, maybe managed care has something to offer that we ought to be having a win, win approach, not a we and they. And we began some dialog between providers and managed care and that’s how this study, or this project came to exist. I think the parent’s comments and the care coordinators may say the most and I’m dispersing throughout to give you an idea. The first team meeting I did taught me so much that I’ve already been able to use with other kids in our practice. I’ve been able to call on other team members to help other families get what they need. This helps me use the community support that I didn’t know how to tap into before. This was a care coordinator after she had been one of the partners in care, care coordinator team meetings that you’re going to learn more about.
The components of the Partners in Chronic Care model, we could talk for a long time. What I’m going to do is briefly highlight what they are and then go through a couple of family cases to give you an idea of what is involved and how we’ve changed the way we approach care coordination. This is a model that works particularly on the kids with the most complex chronic illnesses with the idea that it diffuses the knowledge and skills out to other children in the primary care practice. We identify children, potential children with complex needs through a variety of ways, but one of the innovative ways is that we’ve developed ICD9 codes that we use with the insurance company administrative data base and we actually give the practice a profile of who are their children that are potentially at risk for needing enhanced care coordination and having more services. This has been very popular with our providers because if you work with them, you often know, they can’t tell who their kids are. We also then helped them to find families in a variety of other ways we could talk about later, looking at ER utilization, family calls to the practice, number of specialists they see.
Then the first key thing that happens is a family visit by a practice care coordinator and we are often using part time nurses and people in the office. We use who they have. And an insurance case manager. They become partners in this process. And they assess and identify family needs and priorities. And we’ve done a nice job with training materials to help practices develop very sophisticated assessments that really get down to what are the family’s key issues? Then the next thing that happens is a family meeting in the practice, often at noon with a health team and other key players that the parent wants at the meeting. And you’ll see from my presentation, they’re often very unconventional people we don’t think of initially inviting. And this is different from most meetings. This is not reporting out. This is not telling the parent. The focus of this is come to the meeting and brainstorm, how to help family needs, because often we find that family needs fall through the cracks of all the existing systems. And unless our brains get going very strong and hard, we don’t find solutions and we’ll talk about it. The practice then remains the hub for the kid’s multiple care coordinators, multiple people involved, with a very clear plan laid out from the meeting and insurance partners that work with that practice in an ongoing way.
I think it’s stated well by a mother who said, our care coordinator is a wonderful resource. I know who to call for help and how to get answers to medical and resource questions, often said by care coordinators. But this mom says, the team meeting was the key piece in opening the doors for us. And that’s not something we usually thought about. We think of care coordinators running on, on the telephone all day and calling multiple people, not getting everybody in the room. As a result our care coordinators need to gain skills in facilitating meetings, not simply in learning community resources. So our PPC experience so far. We served over 150 children from birth to 18 years of age in New Hampshire and Vermont. We’ve been able working with our insurance providers and with Medicaid, to have 18 months of health cost data that we’ve been able to track for 66 children. Some children our still in the system. Some moved in and out and we were unable to capture the whole cost range. Our kids are complex. Eighty four percent of the parents said their kids have moderate to severe levels of illnesses and they said their child health status changed frequently. We’ve had over 70 different diagnosis in these children and the majority of the kids have two or more chronic conditions.
What are the important differences in this model of care coordination, how it operates on a day-to-day basis. One, this becomes an anticipatory, not a reactive team model. The partnership of an experienced case manager mentoring a new care coordinator brings in new concepts that they may not have thought of. So a reason for meeting might be the child is entering middle school, the key transition point. They’ll introduce once families acute problems are solved with anticipating upcoming issues. They create new solutions as I spoke when no resources available and they promote and support systems change. They really look at the entire family system and sometimes the solutions lie in helping some other part of the family, not just what you do with the child. And we’re really excited to see how it increases the expertise of staff to handle the most complex children in their practice. Some of our more experienced practices we have to say, you’re not doing any team meetings lately and you find out they’ve click, click, click, click, click, click done a bunch of things and didn’t need a team meeting on that child. And it brings family centered principles to life. Our doctors care about families but often are child centered. And by the family needs and priorities being the lead off to this meeting, it really changes. And it provides a mechanism for identifying children with special healthcare needs within the primary care setting.
Let me give you an example here. David is a four year old with spinal muscular atrophy, a devastating condition. He had high family stress do to managing his complex care. His adaptive equipment was two years old and the family was unsuccessful in getting appropriate equipment. They’re unable to find home health services and the school was scared of this kid and concerned about providing a safe environment when he entered kindergarten. Family’s priorities in the home meeting was that they wanted a summer pre K education program for learning in socialization and had found no one in the school who would listen to them. Their adaptive equipment needs we spoke about and their problems with home health services not covering the span the child needed. This was a very large meeting. The typical, our meetings can vary from four to, in this case, 28 people, the largest we’ve ever had with over 15 agencies and community providers. Early on the meeting had to be briefly interrupted because DME provider was too busy yelling at the insurance person about why she hadn’t been funded and not hearing that she was actually telling her the language she needed to do in the process to be able to get funded. So there is a facilitative process. Toni can talk to you about some of those kinds of settings.
So what, what happened? This team meeting, it turns out, was the only opportunity for the school personnel to meet with David’s pediatrician. We have never had trouble getting community players to come to the pediatrician’s office. They welcome the opportunity. And people say, how do you get those people to come? They really welcome it. They’ll ask specific questions, address their concern about his medical needs and were able to move forward and find solutions. During the family visit, the insurance case manager had actually observed at home David’s physical, the physical difficulties of caring for David and she arranged for some anticipatory adaptive equipment that he was eligible for that the family didn’t know exited. The preschool aid attended the meeting and asked if she could be allowed to provide home health services. She liked this family and enjoyed the kid. The home health provider actually hired her directly and coordinated with the school and so a resource was found in this meeting. I’ve summarized and if you’ve been able to read while we’ve been doing these things, that in addition the school arranged for the summer program and it really changed the ongoing communication with that school system.
And I’m going to quickly run through one more child and then we’ll move on. This is a different child. Adam was a six year old with adreena luqa dystrophy. At first blush, he had in tact family, his mother was a nurse, the doctor thought the child was well connected with resources. But the nature of his devastating condition made the people in Maine decide that this would probably be an appropriate child. Mom looked very together at the home visit when they went to visit and was hooked up with a number of community resources and had a good relationship with the school. She didn’t initially look like she needed anything. But the family was interested in having the family visit. They used an ecomap to look at all the parts of the child’s world and ended up finding that there were several significant issues that really had been very hard for the family and the practice. That one couldn’t assume a family had their act together just by looking at how the presented themselves to the world and the practice. Here were the family priorities. They had $1800 outstanding bill from DME’s who snafus about DME benefits coming in and out. The pharmacy would no longer provide Pediasure because the reimbursement was too low. Nine different meds were refilled on multiple dates. And there were frequent skin breakdowns and they had difficulty because only Huggies diapers worked and nobody would approve it. Simple things, but they, you know, that’s where the rubber hits the road.
So who was at the team meeting? Here are the people and Title V representative was sitting at the table with them. And, and Toni will talk more about how that role works in Maine. So what happened at the end of a one-hour meeting? These meetings are with rare exceptions are limited to one hour, and we have a nice organizational structure to get people through. The DME provider lived in the community, understood this family, other kids were coming from the insurance and otherwise, and she waived the outstanding bill. Nobody asked her to, it happened. A new Pediasure was arranged through the Title V representative. Meds were refills were scheduled so that the family wasn’t turning around every single moment calling. Simple, but you know what. You’ve got to get together and do it. They got a 12-month referral for non-generic diapers and the doctor was guided to how write an effective medical necessity letter in the visit so future would go better. Insurance case manager also provided information on available clinical trials that existed for this condition. And they anticipated DME needs and helped them maximize their benefit coverage. It used to take hours of my time, every month to do what it took 15 minutes to (inaudible) doing a PCC team meeting.
This is what the pediatrician in that meeting said. She’d been going nuts on the telephone. So what do families say? We’ve had resounding positiveness from our families, the times we get a negative problem is they move to another practice and they say we don’t have this in this practice. We follow up with family snapshots about how things are going, one week, three months, six months. And as you notice, before families only a third had some uncoordinating care, didn’t know how to access services, didn’t have the information and didn’t have a written plan of care, and that has been solved by the process of the team meeting. We got connected to a lot of help that we didn’t know about. Everybody helped with everything we needed and we were able to then help ourselves.
That’s a key concept, what we’re trying to do. It’s not to build that dependency but bring the part family as partners to let them move on. So, the rubber hitting the road is also what things cost. We started saying, well, we just better make sure we don’t get an explosion of unmet medical needs and that’s why we better track cost. So from our insurance and Medicaid partners, we got the healthcare utilization, the cost data from six months before, the six months after team meeting, and the following six months. We’ve struggled all along because we don’t feel ethically that we could recruit some very problematic families in making the control group. We do have some data on families who’ve been served with chronic illnesses within the healthcare plan and what happened to their costs? Let me show you what we were pleasantly surprised to find out. For 66 kids we have had a dramatic drop often costs, now remember we don’t pick these kids because they’re expensive. We’re picking them because the doctors are struggling with them. And we don’t pick them as an insurance plan might using healthcare cost issues. That’s what happens, the 56 percent decrease in total cost in the 12 months after and clearly statistically significant as well.
Where does it happen? It happens in, in patient cost changes. You know, the family that falls apart is the one that shows up in a mess and gets hospitalized. We had some out patient surgeries that happened. Where else does it happen? Gradually happens in ER costs, Emergency Room costs drop as well. So we’re excited and that’s led to financial support for this model paying out from the insurance companies to our practices. But it’s been hard to do. This is tough work to build partnerships. And I’m going to turn over to Toni and she’s going to talk some about partnerships and then we’ll talk a little more later. I actually have a pile of these sitting here. Did everybody get a handout?
TONI WALL: I’m really pleased to be here and talk about the model that’s moved into Maine two years ago. We were really thrilled to get a call from Ardis when she first applied for this grant, I guess now four and a half years ago and asking to move it into Maine. And it’s probably one of the first; maybe I’m wrong, that’s really been across state grant opportunity that’s really worked out quite well for both of us. There’s been many bumps along the way, I have to admit. It’s not an easy project to get going in practices. Maine’s a relatively large state, takes eight to nine hours to go from one end of the state to the other depending on weather. But building our partnerships really started at the Title V agency and getting the main chapter of AAP immediately involved, also getting our Medicaid partners involved, and then also getting Anthem. Maine is lucky, we really actually only have a very few insurance companies unlike other states that have multiple insurance companies. So getting Anthem involved and the private payers right up front.
Selecting practices in the state was problematic. We tried to locate or get practices that had an interest first of all in the medical home concept. We identified five or six practices right off the bat but then when we went in to work with them, we found that they had no resource really to support a care coordinator within the practice. It was difficult because these, you know, the nurse who ideally becomes the care coordinator for the practice is stretched in multiple different directions and her 40 hour a week job becomes an 80 hour a week job and then on top of this to ask them to do care coordination. So one of the things that we really sit down with the practice with and actually Ardis’ partner in crime, Elizabeth Pierson comes over and we sit with the practice and discuss all the options right off the bat. The time allotment that the practices, the care coordinator needs and it’s about 20 percent of their time per month, which on top of an already 100 percent job, seems to be astronomical. But they need to sort of take away something at the same time to fit this 20 percent in. It’s also having the frontline people involved. Those are the people who answer the phones, the people who do the billing, whether part of the practice or that umbrella agency that actually works with the practice. It’s having the buy in of the physicians right off the bat, because if you don’t have that, it really can fail.
And then it’s really finding that key person in the practice that can make or break, and it’s not often the physician. It could be, in one instance it was, oh gosh, what was she called? She wasn’t a nurse but she was more of a billing person. And we were unable to get the, the PCC model started in that practice. She did leave and hopefully we will be able to move into that practice and that happens to be the President of the Maine chapter that we weren’t able, even able to get into that practice. And he wanted to do this so much. So how does it work? I have to say, I have been really thrilled to be part of this. And I know these slides are all about developing partnership, but I really, I want to get down to the nitty gritty and tell you what it really is all about is that children with special health needs director. I’ve gone to three home visits with the practice partners who are the care coordinators. And it has been an eye opener for me really to see what parents deal with on, in their homes, what their expectations are, what their frustrations are and we were there, I think the first one was probably about two hours because we were all a little, we really didn’t know what we were doing.
But Beth came over and helped us out and followed pretty much a script, asked a series of questions, talked with the family, talked with the mom, talked with the dad, talked with the young 13 year old and really assessed what their needs are. And low and behold, you know, having worked with children with special healthcare, I’m thinking, well they’re going to name all these medical things that, you know, and no. That’s not what they want. Their biggest issue was school and everyone’s mentioned that. And the more I work with this, schools really do seem to be the number one topic of discomfort around many kids with, and their families with special health needs. I’ll just move this ahead and we’ll see what’s, oops, I don’t know, do you play?
UNKNOWN SPEAKER: (Inaudible).
TONI WALL: Okay. So the home visit takes place and again, it’s about an hour, an hour and a half. We try not to schedule it that long. A series of questions are developed and answered. The care coordinator for that particular practice goes back and then looks at all the people that need to be invited and for this particular one, we had the principal, the Anthem coordinator because they were also involved with Anthem, the Title V representative, which was me. I also have a active liaison to the Medicaid side of the program, since Medicaid really doesn’t have an opportunity to let people out and go do home visits. So I’m the liaison for them. The nurse coordinator, the physician, oh gosh, this was almost a year ago now, but the other home visiting people who work with this young man. And we all sat around. The Doc gave a really good overview of this young man’s health condition and where, and how he gets tired and the whole scenario of where he’s going to go. And the school person eyes went like this, whoa.
We didn’t really know about that, because they see him in such a small context and they wonder why he gets tired and why he can’t walk long distances. And mom and dad, what they really wanted in the school setting was for this young man to participate in much time activities. And they’re biggest thing was, well, when you go to the lunch room, what do you have to do? You have to eat lunch. Well, he didn’t want to eat lunch. He wanted to socialize. That was his biggest thing. And he could eat lunch at a different time back in the classroom. And low and behold the school said, yeah, we can do that. He can go in and socialize and he can enjoy the school personnel and he can enjoy the other kids, and we’ll feed him at a different time. You know, within an hour, we had worked on that and that was settled. All, that’s all that mom and dad really wanted, was more socialization for their young son. The next piece for me, we talked about transition because that seems to be at the heart of what I do lately, was trying to, he’s in the eighth grade and moving up to high school. How are we going to transition this kid into the high school system, recognizing all his needs and our transition plan is coming up to work with this family in about a month or so.
Some of the other issues that we’ve faced in other practices seem to be how the practice operates as a group? Does the practice actually sit down and have team meetings? Because if they don’t and it’s a, you know, five or six practices, five or six pediatricians working in one practice, even though it’s a multi practice system, they seem to work independently. And that can really cause a little bit of havoc. If the practice actually really works as a team and has team meetings once a month or once a week and does the triage on the different kids, we found that that actually works a lot better. In the care coordinator in this one particular instance, oh thank you. The care coordinator in this one particular instance, if you’re familiar with Maine, in northern Maine, Bangor, happens, they meet on a regular basis and between the five or six pediatricians that we have, we’ve now had four team meetings with the four different pediatricians.
One of the things that we’ve noticed is that this person here in the Bangor area, Laura, actually is able to get the pediatricians to talk about the kids that they need team meetings with. We got out and do the team meetings. We come back at a lunch time a month or so later, have the team meeting or the practice meeting, I should say, back at the office and get the problems all settled and she’s got almost, I think it’s like 20 people that she’s got lined up, 20 families lined up to go. She’s, she’s really all set. She emails me on a regular basis with questions, mostly around the Medicaid and the young man that Ardis spoke of, Adam, was one of her patients, and that was very difficult. And it was working with the Medicaid system, the practice not understanding what Medicaid wants, you know, they want their T’s crossed, I’s dotted and everything else. And me working with them to say, it’s really a simple system. You just really need to fill out the green sheet or the pink sheet and have the Doc sign it and it’ll go through. And as you can see, we got the non-prescription, the good diapers that actually keep that young man dry, and got the Pediasure followed through. That practice is well on its way. The practice that I work with right across the street from my office is a little bit more influx. And their, their particular problem is, is that they six physicians. They don’t meet on a regular basis, but they’re really anxious to get this up and going. And they’ve had now two home, we’ve done two home visits with them and two team meetings.
And they finally had a discussion, what they’re going to do is actually hire a care coordinator this summer, around 20 to 30 hours, specifically to do this. So what I like about this project is that it’s flexible. It doesn’t, it has some set standards but it’s flexible depending on what the physicians and what the practices need, because each practice is different. Our next move, I just met with Beth the beginning of, the end of last week, and we’ve identified five or six other practices that we want to move into. These practices were identified, mainly by the care coordinators in my office, as strong pediatrician’s offices that they work with. They work with multiple kids with special health needs. Yes they all are over the state, so it will mean a lot of traveling on our part. The other practice I’d like to work with is a solo practice that I have up in Lincoln, which is about three and a half hours away from me, but that’s okay. And they went through the NICHQ medical home initiative that Deb was a part of, and they’re really ready now to institute this care coordination piece that Ardis spoke of. So it’s really been a nice blend, because they got the full overview of what a medical home is, what a medical home does, how to involve parents, and now they’re ready to move off into the care coordination piece, do the home visits, do the team meetings, and move those kids so they’re better situated. And we just had a large meeting with them the other day and involved several parents. And low and behold, guess what their issues are all about, is the school and education.
So I think that we will be able to make some movement in that realm and get those kids where they need to be, work with the school systems, and have everybody happy. But, and the last thing that I really wanted to talk about was, did I move it?
UNKNOWN SPEAKER: Go back.
TONI WALL: Okay, is how we have actually financed part of this. Ardis didn’t speak of, Anthem actually pays the practice $300 per kid and, in order to do this. We view some of our money for the Medicaid kids and the children with special health needs kids that aren’t part of the Anthem program or Anthem insurance and we also pay those, the practice $300. Actually it hasn’t really been that expensive. It’s only been, we’ve had two kids, so I’ve paid $600 out in what, two years, so it hasn’t been that major. We are looking and working with Medicaid to look at the CPT codes around care coordination and they are extremely interested in broadening this program with their population, recognizing especially where the *KD Beckett kids that are an enormous cost of money. So I think that we have moved slowly. We’ve got the buy in. We are now getting, be able to get some data from Maine. One of Medicaid’s big question is, well that’s New Hampshire data, that’s not Maine data. Well, it’s data still on Medicaid kids, and be able to show them that there is, it does make a difference. And I think that’s, I think that’s it.
ARDIS LEE OLSON: A team approach. So what Toni and I have presented here is a new model of partnership. It is an efficient way to enhance care. You just don’t go out and do it, you really need, you heard from her, careful attention to partnership building and you need to excess and maintain contact with decision makers within insurance and state funding systems. She didn’t tell you that we spent almost two years ricocheting through the state levels.
TONI WALL: No, you did that.
ARDIS LEE OLSON: And many changes in Medicaid leadership, but our perseverance paid off and you have to kind of be prepared to do this kind of stuff, to deal with changing players and new windows of opportunities that open with change. So we hope we’ve inspired to think of do this.
TONI WALL: And it’s rewarding, I have to tell you it’s extremely rewarding for me because being involved in most of the bureaucrat, bureaucratic stuff, but actually working with parents. It really makes me believe this is really what it’s all about, so I encourage you to ask questions and we’ll try to answer them to the best of our knowledge.