[View Image]When my daughter Sarah was born 10 years ago, I often struggled with what to call her condition. Crouzon’s Syndrome was far too clinical and cranial-facial condition or facial difference just didn’t roll off my tongue very easily. And I absolutely hated the word birth defect — because she is definitely not defective in any way.
My dilemma was solved when I heard the phrase “children with special health care needs,” because Sarah is so special and she does have many health care needs.
A new definition
Children with special health care needs are those who have or who 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.
[View Image]This definition was developed under the leadership of the federal Maternal and Child Health Bureau (MCHB) and has now been accepted by child health experts nationwide,
including the American Academy of Pediatrics.
In the past, categorizing children by their diagnosis led to a proliferation of disease-specific programs and a fragmentation of services. An assumption was also made that the need for services was limited to children with disabilities that restricted their daily functioning or activity. This new definition recognizes that there is a broader group of children who have ongoing needs for health services.
Despite the vast array of diagnoses and conditions, children with special health care needs and their families all share the same need for a comprehensive system of care that allows them to live, to be educated, to play, and to build relationships in their community.
It is estimated that 13% of our nation’s children have a special health care need. While the nature, scope, and intensity of services vary, adopting this definition shifts the focus to developing systems of care that meet the needs of all these children, regardless of the specific diagnosis or category.
The needs of families
[View Image]Seven years after I heard this phrase, “children with special health care needs,” I accepted a position with the MCHB/Department of Health and Human Services. As I frequently speak with families of children with special health care needs across the country, including families referred to me by AboutFace, the same issues are universally brought up: Families want to have access to a physician who will be will be compassionate and provide coordinated, ongoing, and comprehensive care. They are tired of trying toorganize the vast array of services their child needs, especially coordinating school and medical services.
Families often feel their voices and concerns are not heard, and they are not always satisfied with the care their child is receiving. Not enough is being done to assure their son or daughter can make the transition to adulthood. And more than anything, families want health insurance that pays for the services their child needs and includes their child’s providers.
Improving systems of service
In response to this need, the Social Security Act was amended in 1989 and mandated Title V Maternal and Child Health Programs for Children with Special Health Care Needs to “facilitate the development of community-based systems of services for such children and their families.”
This focus on improving service systems for these children is also reflected in both Healthy People 2000 and Healthy People 2010, the nationwide agenda developed by the U.S. Surgeon General to improve the health of all the people in the United States. Healthy People 2010 includes an objective to “increase in the proportion of territories and states that have service systems for children with special health care needs.”
Under the leadership of the MCHB, six performance outcomes were developed as a way to measure progress in meeting the Healthy People objective and our mandate under the Social Security Act. These outcomes — our promises for all children with special health care needs—are listed in the box at right.
Our goal to achieve community-based systems of care is also part of the President’s New Freedom Initiative, a major activity across federal agencies to increase community integration for people of all ages with disabilities.
In Delivering on the Promise, a report to implement this initiative, the MCHB was given the responsibility of developing and implementing a plan to achieve appropriate community-based systems for children and youth with special health care needs and their families. We are in the process of working with many partners — families; providers; health insurers; public agencies at the federal, state and local levels; businesses; and voluntary organizations to develop practical action steps and strategies to develop this plan.
Results of the national survey
Another exciting development is the completion of the first National Survey on Children with Special Health Care Needs. The survey interviewed 750 families, who have a child with special health care needs, in each state and the District of Columbia.
For the first time, we are able to assess the prevalence of special health care needs among children and explore the extent to which these children have medical homes, adequate health insurance, and access to needed services.
Results of the survey, along with the products of other initiatives, will provide us with a national database to perform needs assessments, measure quality of care, and promote and implement the services needed by children with special health care needs. For more up-to-date information, go to the MCHB website at www.mchb.gov.
I have worked in both the private and public sector, and I have to say in all honesty, I have never been part of a more strategic, forward-thinking program. Yes, our goals are ambitious, and given budget and resource limitations, we face huge obstacles. But I am convinced by 2010, we will make progress in assuring that all children with special health care needs have access to the system of care they deserve.
I will keep you abreast of our progress in the years to come. If you are interested in getting more information or in learning about specific initiatives in your state, feel free to e-mail me at LHonberg@hrsa.gov.