AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
LYNDA HONBERG: Good morning, sorry for the slight difficulties in getting started. My name is Lynda Honberg. I work in the Division of Services for Children with Special Healthcare Needs. And it’s wonderful to see this fabulous turnout for what I think will be a very exciting session on care coordination. We’ve got a great panel here who will be talking to you about what they are doing around care coordination and we hope after their presentations that we really engage in an active discussion on this very, very core component of a system of care for children with special healthcare needs.
I mention again that I work in the division but I think my most important hat is that I am the parent of a very special, actually I have to say, young adolescent who turned 14. I find it hard to believe, daughter with special healthcare needs. And I know for me when I think about that system of care that is so important to her as well as all children with special healthcare needs that she have that access to a medical home, that she have access to affordable insurance, that I as the mother and parent am involved in her care, that she as an adolescent is involved in her care, both in terms of her care as well as at the policy level, that she as well as all children with special healthcare needs and all children be screened early and continuously, that all the services that she needs, from the school, from the medical system, for kids who need services from the social system that that’s coordinated and made easy for parents and I think we know often times it isn’t. And then as an adolescent and actually we had her IEP transitioned just last week because she’s going to high school next year.
But I have found throughout the course of her life that the most difficult part has been coordinating all the services that she’s needed. And that we’ve had times where that’s been easy, that we’ve had a care coordinator assigned to us and helped us and other times it’s really fallen on my shoulders. So, when I talk to parents, this is really kind of the core component of what parents need to really make that system of care work for them. I’m going to just talk to you just briefly about a study. Obviously, I’m not Nancy Casson or Gail Merriam. I’m Lynda Honberg. And, but Nancy and Gail are from JSI, which is a contractor for the division and they did a review of the care coordination activities that the grants that are funded by the division are engaged in. So I’m just going to briefly go over it. There are not enough handouts and I apologize. I didn’t expect quite this crowd. There are copies of their report in the back and we’ll make more available on the web.
So as I mentioned, care coordination is that core component of services for children and youth with special healthcare needs. And we surveyed 44 grants and we found that they all felt this was an important topic to learn about, that there was a wide range of definitions. And prior to this there had been no review of state implementation grant activity. So JSI in collaboration with all of these grantees conducted, developed a survey a tool and conducted discussions with all 44 grantees. And what we found was, that there were really two broad areas of activities. One was, there were roughly 13 out of the 44 grantees actually are doing direct care coordination, either in the medical home or what we call Community Based Card Coordination. And the other ones were working at a more systematic viewpoint. Now really the two are interrelated because obviously, if you’re working at the direct care coordination level and trying to learn about what works, that ultimately is going to impact the system. In terms of the medical homecare coordination and this is again a definition that came from the interviews. This is not a definition necessarily that we’re saying the division is going to use.
But basically what they said was in the medical home, the role of care coordination was to assist families obtaining medical and specialty care, appointments, referrals, and just really dealing with insurance issues. And that the goal was to decrease the use of high cost medical care, and that eligibility was based pretty much on a diagnostic or utilization of medical care, and then that the staffing was mostly by part time nurses. In terms of the financing part of this, what a lot of the grantees said was obviously there was the issue of getting the insurance companies to accept it, and there were issues around CPT coding. We now do have CPT codes that would work with care coordination but again we still have the issue of both Medicaid and the health insurance companies accepting it. And also they cited that staff, particularly physicians, sometimes didn’t have time to actually code that care coordination activity. In terms of the Community Based Care Coordination, again this is a definition from the people we interviewed, they found that that role was to really help families and adolescents manage that wide range of services, not only in the medical care side but also in schools, in social services, getting things like camps for kids. And, that need of those types of services were determined by the family or the adolescent.
So it was really to help them navigate that whole range of services. And often times the staffing was either the parent or the adolescent or the person with the disability. And the eligibility was much broader. It was all children or adolescents with some kind of special need. In terms of those grantees that were working at a more systematic viewpoint, there were really three broad areas. A big area was screening, which was the, to increase screening for hearing loss and to monitor referrals. The reason the hearing losses that we did do a sample of some of the newborn hearing screening programs. Another systematic strategy was to look at eligibility in terms of coming up with strategies to identify kids in need of care coordination. And finally, financing in terms of exploring innovative ways to increase funding for care coordination and developing operational definitions of care coordination. Across both that direct care and systematic, there was some key components and attributes. One, dear to my heart, is the family involvement, that that was critical. That families were used as advisors, as staff, and particularly and I think we’re seeing this more and more is adolescence. And that were a wide range of partners in terms of trying to implement care coordination, Medicaid, the Academy, Title V, Head Start in the schools.
For cultural competency was one of the most challenging areas although the grantees are using strategies such as translation and hiring staff who represent the community. And evaluation, unfortunately, is still in its early infancy, primarily process evaluation although some grantees are trying to collect outcome data specifically related to the utilization of care. So, what do we see as our successes? Obviously, family satisfaction and I think a surprise to many of us was that staff felt very satisfied in terms of really trying to help families and adolescents and the wide range of partnerships. Challenges and that hopefully we’ll be able to engage in a discussion around that is a definition of care coordination. Again the definitions that were cited, were cited by the recipients but they came back to us and said, it would be great if we could come up with one definition. Still a challenge in terms of trying to use families in terms of them having enough time. The financing, I don’t think we can come to any session without hearing about that as an issue. System issues particularly with the schools. There are still a lot of problems in terms of getting the schools involved and coordinating with them. Problems with physicians referring children for care coordination. Disparities in access and then finally ways of identifying children with special healthcare needs who would be appropriately served by care coordination. And I hope we have a panel today that hopefully will talk more about the issues.
These are two grantees that have been working in this area. The first presentation will be by Debbie Allen. She’s an associate professor at Boston U School of Public Health. She’s also one of the principle staff at a new financing center called the Catalyst Center whose going to have a goal of looking at care coordination. She’s formerly the Children with Special Healthcare Needs Director in Massachusetts and she’s the grandmother of Ava and a very proud grandmother I must add, quite adorable.
The next two presenters actually are a team. First Dr. Olson who is a professor of Pediatrics at Dartmouth Medical School at the Hood Center for Children and Families, she’s worked there for 15 years developing innovative community primary care approaches to improve care and family support for children with special healthcare needs. And she really emphasizes the practical approaches to partnership in communities. And with her, because they’ve been working as a partnership and they’ll tell you all about that, is Tony Wall whose a Children with Special Healthcare Needs Director for Maine. And that’s a position she’s held for over 10 years. And she strives to involve youth and families in all aspects of policy development. And her greatest accomplishment is her 14-year-old son Ethan. So with that, I think you’re in for a great discussion and we’ll really learn about both the system approach and a direct care approach and what we’re trying to do to improve the system of care for children and youth with special healthcare needs. Thank you.