MCHB/EPI Miami Conference — December 7 - 9, 2005

The National Survey for Children's Health: From Data to Action in Two States — Transcript

BONITA SORENSEN: Thank you so much, Dr. Zeni and Dr. Kogan. And welcome to Miami , huh? Whoever planned this conference, sandwiched between Hurricane Wilma and probably during the coldest week of the week so far, it's clairvoyant, right? Beautiful down here. I came in this morning from 400 miles north of here, in Tallahassee , and it was rather chilly there compared to here. So thank you, so much for inviting me to participate.

Wanted to share with you from a policy perspective, our experience in Florida . The national survey of children's health status is really a landmark for Florida . In Florida we have, for a number of years, used PRAMS and we've used YRBS, and we also were fortunate to have surveys of our children with special needs, thanks to the Bureau of Maternal and Child Health and the National Center of Health Statistics at the CDC. But this is phenomenal, having a snapshot of all of our children in Florida all at once, and I commend the bureau and your folks for accomplishing this.

In Florida , we're also fortunate to be able to partner with our university partners. Dr. Zeni, who gives us information out of that data and can translate for us how we can utilize the survey data points for policy changes, so we're appreciative of that as well.

The medical home concept has been a huge priority in Florida , and want to spend some time discussing it with you and describe it more fully for you. In this discussion, I'm going to cover three basic areas. The definition of a medical home, the description of Florida's medical home efforts, and the implications of Dr. Zeni's study for Florida policy.

Medical home is not a house or a building or a facility or a place or a new form of institution. And it's more than just a personal provider. Having a personal provider is really the first step in the process of creating the concept of a medical home.

This slide comes from the original definition of a medical home back in 1992, by the American Academy of Pediatrics. Pediatricians like to call this the seven C's. Physicians like acronyms. There's a C in every word I guess, so it's the seven C's. Medical care that's accessible, continuous, comprehensive, family centered, coordinated, compassionate and culturally affective.

A medical home is where the medical care is provided by a personal care or a primary care physician or nurse, where that primary care physician helps manage and facilitate all care, and that personal care provider is known by the child and the family, and in that process, develops a partnership in mutual trust between the provider and the family.

In 2002, because of some questions about reimbursement and questions about the exact definition of a medical home, the American Academy of Pediatrics tried to clarify the definition of a medical home and kind of expanded the definition. You can see it's somewhat similar to the original definition in 1992. Family centered, the child is addressed, but the family is recognized. The impact of the family and the other children in the family is recognized. Clear information. It means unbiased, culturally sensitive information is provided to the family, not only about health care, but some of the other community assets that can be accessed by the family. Primary care, naturally, and full-time care, the concept of continuity. Continuity meaning continuous, 24-hours a day and seven days a week, but also continuity in the sense of extending not only all the way from infant to near adult age.

Another aspect; identity. Identify, refer and manage specialty care. It's not just primary care, it's really a comprehensive care package. Interaction with the community and its services, including early intervention services. Care coordination. A comprehensive medical record in one place. And finally, health assessment and counseling, the importance of culturally sensitive assessment, importance of transitioning children into adult care.

In Florida, the children's medical services, the part of the Florida Department of Health who cares for children with special needs, and they have had a very strong interest in the concept of a medical home for many years, and you can kind of see the history here. Back in 1984, that's 20 years ago, the first CMS region in Florida , I believe there's about 23 regions in Florida that have CMS operation. The first region contracted to do primary care using pediatricians and family physicians. These are board certified physicians that provide not only the specialty care for children with special needs, but also the primary care, the beginning of the medical home concept. In 1999, that primary care extended to 14 additional CMS regions, and it's now nearly statewide. In 1996, the CMS, the Children's Medical Service Network was authorized as a center for children with special needs center, a comprehensive service delivery system. And in 2003, Jacksonville received federal funding to pilot a medical home learning collaborative. It was the first pilot in Florida and in 2005, additional pilots are being supported.

The medical home learning collaborative hopes to be able to support the care coordination of children with special needs, as well as improved sharing of information through electronic coordination notes, as well as establish methods for identifying children with special health care needs, develop care plans and family records, improve office practices for families, maintain quality improvement activities.

Recently, the Florida department of health was named as one of seven leadership states selected throughout the country to try to develop working models for a medical home. These workshops and learning collaboratives are a partnership between the Title V children with special needs programs and seven other states, plus the Maternal Child Health Bureau, plus the American Academy of Pediatrics, plus Family Voices, plus the National Centers of Excellence.

With this program, the future is going to be, I think, even more bright. In Florida , we have developed a steering committee, which includes families, the physicians, care coordinators, as well as other leaders. And the intent here is to more fully define a model for the medical home, including determining the minimum threshold or criteria for what makes a medical home, determining the method of extending this across the state, as well as reviewing an implementation plan.

Additionally, it's intended to hold statewide learning collaborative training sessions. This is a process really of training physicians across the state of what are the components of a medical home, how do we provide that holistic, nurturing, comprehensive care model. I think as you see more and more of these characteristics, you realize it's not only important to have a health care system like this for children with special needs, but obviously that applies to all children in our state, as well as across the country. In addition, developing some methods and measures for quality improvement for private practices, to develop and acquire tools for practices. Implement evaluation criteria and work with our federal representatives to develop models for other states.

So what are the policy implications of the personal provider and medical home of Dr. Zeni's investigation and analysis? Clearly, there's a difference between access to care and that quality of care in the medical home. We clearly can see the separation. One can have a medical home that has the seven C's, but if you don't have access to that home, then that's not exactly what we're looking for. And I think some of the analysis that Dr. Zeni shared with us, it is very poignant for Florida in terms of access, more so than the quality.

The health care coverage really had the strongest, whether or not a person has health insurance, had the strongest association after adjustment for the other social and demographic factors. In Florida , this is has not gone unnoticed. The pediatricians in Florida realize and recognize and advocate for better reimbursement, that assures not only access to a personal provider, but obviously reimbursement for specialty services and all the wrap-around services within a medical home is critical to create that medical home. As a matter of fact, the Florida Academy of Pediatrics here has launched a class action lawsuit against the Medicaid organization as well as the Department of Health over these reimbursement issues. And their feeling so strong, that the medical home is so important and provides better care, that they feel that this is the key or at least the first step.

And many of you may also be aware that Florida is launching a Medicaid reform process. We have a special session going on this week actually. The governor wants to reform Medicaid, and you all are aware all across the country, the reform of Medicaid is about costs of Medicaid. And I think we can all understand, if it's only based on cost, the quality issues, the medical home, holistic care can sometimes get lost in the rush to control costs.

Other characteristics. There were family characteristics that were significant as well. Characteristics, Hispanic origin, for example, Hispanics had a two-fold risk for not having a personal care provider. And as Dr. Zeni illustrated, poverty was a significant factor, in addition to health care insurance. And living in a home that did not have two parents, all these family characteristics were significant, even with health insurance, which leads us, I think, particularly in Florida, as I think many states, well, if you give them health insurance, then that's the answer. It clearly is not the answer. There's more to the story. And we in Florida are particularly, I think, cognizant and concerned about disparities of health care, even in the presence of insurance.

So we in Florida are particularly, I think, on notice to assess the cultural competency of our health care systems, of our private practices and to assure that we're not biased ourselves.

Also, I think we've had the experience in Florida of the effectiveness of outreach to families with children. We're all, I think, experiencing this now on a national level, with the Medicare D, part D rollout, the importance of that one-on-one outreach and education is clearly important, particularly when we're talking about these vulnerable children.

Child characteristics, again, that were significant, were age, long-term medication needs, emotional and behavioral difficulties as well. Older children were less likely to have a personal provider. This is, I think, particularly critical in Florida . It's the adolescents that we need to try to reach for preventive, anti-high-risk behavior messages, but also, in order to transition adolescence into adult care. So we're going to need to develop strategies to try to engage the older children.

In addition, good news, I guess, in Florida at least, the children with chronic conditions were more likely to have a personal provider, and that may be partially because of the substantial children's medical service we have in Florida . But unfortunately, children who had emotional and behavioral or concentration difficulties were less likely to have a personal provider, and therefore, obviously from a policy perspective, the importance of our creating a system of follow up and wrap-around social services for children with those problems.

In summary, obviously the survey, as I've mentioned, was a landmark and a very valuable resource for Florida , and I'm sure for other states as well. The insurance and family and children characteristics will reveal the impact of a lack of a personal provider, which relates to the medical home concept in Florida . And as Florida further develops our own model for medical homes, these data and analyses need to be considered and taken into account. And particularly in Florida , they have implications related to Medicaid reform as well. So thank you.