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 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.
 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
 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.
Moving ahead
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.
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