HRSA/MCHB 2005 FEDERAL/STATE PARTNERSHIP MEETING

PUBLIC HEALTH ACROSS THE LIFESPAN

Children with Special Health Needs (DSCSHN)

BONNIE STRICKLAND: I’m back, and as you can see, we’re set to go. Thank you, guys, for your help. This is a very special partnerships meeting for us because it means that we’re about half way through an agenda that we launched about five years ago. And I know that this is new leader orientation, but I’ve also seen lot of folks that have been with us for a while and I’m wondering how many people of you were with us in 2005 when we launched All Aboard the 2010 Express? I see a few hands there. It was a terrific meeting that we held in December of 2001 and it was to re-energize ourselves around the this notion of building community based systems for children and youth with special healthcare needs. We are the Division of Services for Children with Special Healthcare Needs, but in way that acronym belies our broader focus. We also serve youth and a number of our programs also serve adults with special healthcare needs. But we go by this acronym, just for familiarity.

I loved this, I had to put it in. This was the logo for our 2010 Express kick off in 2001. It was the logo of a train leaving the station, building community based systems of services for children and youth with special healthcare needs. We have a systems mandate that’s about 20 years old. Actually, it goes back before then, but in the ODIM 89 amendments, our legislation, Peter referred to earlier, actually modified the language to specifically give Title V the responsibility to facilitate the development of community based systems of services for children with special healthcare needs and their families. Then, in 2000, actually, the first healthy people 2010 objective for the nation related to children with special healthcare needs and systems building was included in the national objective for the country to increase the proportion of states and territories that have service systems for children with special healthcare needs. That language is again in the healthy people 2010 objectives. And, most recently, the President’s New Freedom Initiative was launched to break down barriers to community inclusion for children, youth, and adults with special needs. And the responsibility was given to HRSA, MCHB, to facilitate the development of community systems and services.

We conceptualized that system and many of you, most of you, probably are familiar with the characteristics of that system in the way that we have tried to describe it. It’s built on six constructs. Family partnership and satisfaction, access to medical homes, access to affordable insurance, early and continuous screening, easy access to community based services, and services to transition to adulthood. Peter and Mike referred to the National Survey of Children with Special Healthcare Needs that was conducted in 2001, and that survey provided the baseline for these systems constructs that you not only see here but they’re also part and parcel of your block grant reporting requirements and so this should look pretty familiar to you. We’re half way through that campaign, started in 2001. We hope to be there by 2010 and, as you can see, by these numbers, these percentages, we’re about half way there. The cup’s a little more than half full, except in the last year, transitions to adulthood. So, we will be making a very, very concerted effort during the next five years to be sure that we grow significantly in all of these areas. At this point in time, all of our resources in the brand and in the division are geared toward achieving community systems for children, youth, and in many instances, adults with special healthcare needs.

Who are children, youth with special healthcare needs? Well, here’s the definition. It’s one of the broadest definitions in government. It’s children with special healthcare needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. The National Survey of Children with Special Healthcare Needs estimates that 12.8% of children and youth under 18 have a special healthcare needs. Now that does not include the at-risk population and it doesn’t include anybody over the age of 18. So, it really is a very conservative estimate of the number of individuals out there with special healthcare needs.

Well, who are we, in the Maternal and Child Health Bureau? The division is made up, essentially, of three parts, all of which have work that is independent but also coordinated with one another. So, I’m going to tell you just a little bit about each our parts. Under the leadership of Dr. Meryl McPherson, who’s the Office of the Director, she hands full keeping up with all of us all the time, but she also has work that is specifically, derives specifically, from that office and it tends to be work that isn’t already imbedded in one of the other programs. And, working with her, her able Administrative Assistant, Rennie Newton, has her hands full just trying to keep up with Dr. McPherson. Dr. McPherson leads and integrates, and represents all of the systems issues with the leadership of other federal agencies. For example, she works with the Center for Medicare and Medicaid Services. She works with the Social Security Administration. She works with the Department of Education, and she works with the Health and Human Services Office on Disabilities, which is an office at the Health and Human Services level appointed by the President of the United States. So, it is her responsibility to pave the way for us with other federal programs working on systems. She also leads the development of emerging issues that haven’t yet found their way into one of the other branches. They’re issues that need more development, such as sub-specialty capacity building, such as access to services for children and youth on the autism spectrum. She also leads the division international efforts, and that is an effort to spread the domestic agenda for systems for children with special healthcare needs abroad, and the Ninth International Congress is due to happen next year, in December. So, she’s busy working on them.

The Integrated Services Branch is one of two branches within the division, and I am the Branch Chief for that program, and the major cheerleader. Diana Denboba is my Deputy and also has numerous program responsibilities around family professional partnerships, cultural confidence, and community systems. Dr. Monique Fountain, she is the Director of our Medical Home Program and our Healthy and Ready to Work programs, and I’ve got Monique there with a car because she has the best looking car of anybody in the division. Two of them, as a matter of fact. Linda Hondberg, manages our financing program and she’s constantly trying to pull a genie out of a bottle to address some of the financing issues in this country to insure that children with special healthcare needs have adequate financing. Janie Martin Heppel is the Director of our Traumatic Brain Injury program. She’s the newest addition to our staff and doing a wonderful job keeping the traumatic brain injury program up in the air. Irene Forthman is the Director of our Newborn Hearing Screening program and her claim to fame just now is that we passed the, what is known as, the PART exercise. The Program Assessment and Review Tool, which many of us are undergoing at this point in time. So, we’re pleased about that. And then our Administrative Assistant, Beverly Jones, works to keep track of all of us.

In the Integrated Services Branch we, as I said earlier, we have dedicated all of our resources to those six system constructs that you saw earlier. Number one, to promote family center care, cultural competence, and family professional partnerships. One of the activities that’s going on in this are that you’ll hear a lot about while you’re here are the family to family health information and education centers. And Diana will be here the rest of the two days to talk about that and to meet with you. Secondly, to assure that all children and youth with special healthcare needs have access to on-going comprehensive care through the medical home. The medical home is our term for comprehensive, continuous, on-going, quality care. The care that all of, children, all children, all adults for that matter, really need and deserve. You may be familiar with some of the learning collaboratives that have been going on around the country. These are often sponsored by this medical home program through grant funds from our branch.

As I mentioned earlier, Linda Hondberg manages the adequate health insurance and financing program. One of the major efforts going on there is that we just funded a new national resource center called the Catalyst Center that was specifically funded to work with state programs in improving the financing of systems and infrastructure for this population of children and youth.

Early and continuous screening and surveillance. This is a program that’s a cross over with the genetic services branch, and we have several staff working very, very closely together on this. Debbie Lindsor, I don’t think is here, but she’s in the genetic services branch and she’s working on enhancing data integration. Irene Forthman, as I said, shares and directs the newborn hearing screening program, and we’re also working on a paradigm to think about screening and surveillance for all kids with all kinds of issues, and just screening for kids in general; developmental screening, model, if you will. You’ll hear more about that later.

We are supporting community based partnerships. We will be funding a new national center in the coming year to focus specifically on state and community partnerships, to build those community systems that we were talking about. And then, in the area where we’ve probably have made the least progress, the area of adolescent transition. Dr. Fountain will be here tomorrow and there’s a specific session on what our program, Healthy and Ready to Work, that I think you will find very, very interesting. This is the area that we have the most work to do, and we’re working on a strategic plan to get that implemented, and you’ll hear a lot about that during these two days.

And then last, but not least, we attract several categorical programs. Newborn hearing screening, epilepsy, traumatic brain injury, and we are not only maintaining the legislative intent of those programs, but we’re also working very hard to integrate those programs into a broader comprehensive coordinated system for all children with special healthcare needs. So, that’s the Integrated Services Branch.

Now, the Genetic Services Branch. Dr. Michelle Peryear, as the Chief of the Genetic Services Branch, and Marie Mann, as her Deputy. Penny Chyler does the education and help literacy work in that branch. Deborah Lindsor, as I just said, works on data integration and connection to the community system. Judy Hagopian and Jack Onner due the hemophilia program, and Jill Sugar does the work with inheritable disorders.

And, Genetic Services Branch also has six major areas of emphasis. First is to development the healthcare and public health infrastructure to expand newborn screen program, genetic screening programs at this point in time, but we’re also working on a project to help link the data systems of several newborn screening programs with the community system to help enhance services provided to young children. So that’s a major area of emphasis. Second, the branch has a lot of activity just now, around examining emerging issues and evaluating emergent technologies with a special emphasis on the financial, ethical, legal, and social implications of these technologies and issues for the MCH population. Along with that is a large effort to improve the genetic literacy of the MCH population so that the population understands the risk, the limitations, and the implications of genetic testing, and some of the benefits. Fourth, the branch provides leadership in defining the educational needs in genetics of health professionals. There’s a huge professional development need out there to better understand the genetics. Fifth, this branch supports the national hemophilia program, (inaudible), and sickle cell models of comprehensive care. And then last, they build on the expertise gained with the MCH population to provide national leadership on expanding and enhancing genetic services for the entire population. One of the activities that I wan to mention, just briefly, that the genetic services branch is spending a great deal of time on these days, is Title 26 of the Children’s Health Act. It has to do with screening for inheritable disorders in newborns and children. The purpose is expand newborn and child screening programs. It involves multiple agencies, HRSA, the Administration for Healthcare Research and Quality, CDC, and the National Institutes of Health. They, includes grants to states, a large evaluation effort, and an advisory committee that we are responsible for implementing. At the advisory committee on inheritable disorders and genetic diseases in newborns and children, and the committee will advice the secretary on science and technology for expanding or enhancing screening for inheritable disorders in children.

We all work together. We’re one division. All of our work interrelates with everyone else’s, and we all work for you, the state programs. So, we’re hoping and inviting you to work with us, over the second half of the 2010 Express into the year 2010. There was a little whistle that went along with that, but, you get my point. Thank you very, very much. We’re looking forward to working with you for the next couple of days.