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Monitoring the
Maternal and Child Health Bureau's Core
Outcomes for Children with Special Health Care Needs:
The National Survey of CSHCN (SLAITS)
was sponsored
by the Maternal and Child Health Bureau and conducted
by the Center for Disease Control (CDC) National Center
for Health Statistics (NHCS)
Purpose of the National
Survey:
- To produce national and state level estimates of the
prevalence of special health care needs and their impact
on children and families
- Explore the extent to which children with special health
care needs (CSHCN) have medical homes, adequate health
insurance, and access to needed services. Other topics
include care coordination and satisfaction with care.
- Assess how well the system works form the perspective
of families
About the Survey:
- Screened 200,000 families to identify CSHCN.
- 40,000 CSHCN; 750 in each state
- Conducted from Oct 2000 to March 2002
- Planned repetition in 2006 and 2010
To view the survey instrument click here: SLAITS
(State and Local Area Integrated Telephone Survey)
Indicators of a Medical Home
in the Survey
- Child/Youth has a usual source of care and a personal
doctor or nurse
- The family experiences no problems in obtaining referrals
for specialists
- Effective care coordination is available when needed
- Receiving care that is family-centered
- Spend enough time
- Sensitive to culture
- Listen carefully
- Provide needed information
- Make family feel like a partner
How well are we doing meeting the
needs of CSHCN and their families?
- All CSHCN will receive regular ongoing comprehensive
care within a medical home. Percent of CSHCN Meeting
Goal: 51%
- All families of CSHCN will have adequate public and/or
private insurance to pay for the services they need.
Percent of CSHCN Meeting Goal: 60%
- All children will be screened early and continuously
for special health care needs.
Percent of CSHCN Meeting Goal: 52%
- Families of CSHCN will participate in decision making
at all levels and will be satisfied with the services
they receive.
Percent of CSHCN Meeting Goal: 57%
- Community-based service systems will be organized so
families can use them easily.
Percent of CSHCN Meeting Goal: 74%
- All youth with special health care needs (YSHCN) will
receive the services necessary to make transitions to
all aspects of adult life. Percent of CSHCN Meeting
Goal: 6%
Where's the DATA?
The National Center for Health Statistics (NCHS) and at
the Maternal and Child Health Bureau (MCHB), have recently
published a chart book featuring summary data from the National
Survey of CSHCN.
U.S. Department of Health and Human Services, Health
Resources and Services Administration, Maternal and
Child Health Bureau. The
National Survey of Children with Special Health Care
Needs Chartbook 2001. Rockville, Maryland: U.S.
Department of Health and Human Services, 2004.
Individual copies of this report are available at no
cost from the HRSA Information Center, 2070 Chain Bridge
Road, Suite 450, Vienna, VA 22182-2536, 1-888-ASK-HRSA
or (703) 442-9051.
Data Resource Center on Children and Youth with Special
Health Care Needs (CYSHCN)
This site provides data, tips and tools to use with
data for states and families to help guide improvements
in community-based systems of care for CYSHCN.
You will find a variety of resources on this site - including
an easy to use, interactive data query feature that allows
users to view and compare state, regional and nationwide
findings from the National Survey of CSHCN, a survey sponsored
by the Maternal and Child Health Bureau. Educational materials
about the survey as well as state-specific profiles of key
performance indicators based on data from the National Survey
of CSHCN are also available. www.cshcndata.org
State and national data results on public/private
insurance coverage, CSHCN with emotional, developmental
or behavioral issues, and additional questions from the
Impact on the Family section of the National Survey of
CSHCN can be searched through the interactive data query
feature on the Data Resource Center web site. cshcndata.org/dataquery/SurveyAreas.aspx
State-specific Datasets from the 2001 National
Survey of CSHCN Interview can now be downloaded from the
Data Resource Center web site. Available in either SPSS
or SAS format, these cleaned and labeled datasets contain
Interview results for 750 CSHCN in each state. Many new
variables, key state indicators and MCHB outcomes measures
are included. cshcndata.org/Content/States.aspx
Official Web site for the National Survey for CSHCN
from NHCS
Additional information about the National Survey of
CSHCN, including links to the data sets, can be found at:
www.cdc.gov/nchs/about/major/slaits/cshcn.htm
Comparing States Using Survey Data on Health Care
Services for CSHCN (NCHS, 11/18/03)
To assist researchers who are looking for national
and state-level estimates for key indicators from the survey,
NCHS has recently posted a presentation on these estimates
to its web site. The title of the presentation is “Comparing
States Using Survey Data on Health Care Services for CSHCN,”
by Dr. Stephen Blumberg. The presentation is available in
pdf format. Depending on your version of Adobe Acrobat,
you may have to rotate the presentation clockwise to view
it properly on your computer.
This presentation was part of an invited session on the
National Survey of CSHCN at the Maternal and Child Health
Epidemiology Conference in Tempe, Arizona December 10,
2003. Questions about the presentation should be addressed
to Dr. Blumberg at sblumberg@cdc.gov.
Additional publications and presentations using SLAITS
data can be found on the Publications
and Presentations web page.
Publications and Presentations
The National Survey of Children's Health: A New Data
Resource
Maternal and Child Health Journal, vol, 8,
No. 3, September 2004. Peter C. van Dyck MD, MPH, Michael
Kogan, PhD, David Heppel, MD, Stephen J. Blumberg, PhD,
Marcie L. Cynamon, MA, and Paul Newacheck, DrPH.
Prevalence and Characteristics of Children with
Special Health Care Needs. Archives of Pediatrics
& Adolescent Medicine, vol 158, September
2004. Peter C. van Dyck MD, MPH, Michael Kogan, PhD, Merle
McPherson MD, Gloria R. Weissman, MA, Paul W. Newacheck,
DrPH. Full
Text.
The National Survey of Children with Special Health
Care Needs. Ambulatory Pediatrics. Peter
C. van Dyck MD, MPH, Merle McPherson MD, Bonnie B. Strickland
PhD, Kerry Nesseler RN, MS, Stephen J. Blumberg PhD, Marcie
L. Cynamon MA, and Paul W. Newacheck DrPH, vol 2, 2002,pages
29–37. Full
Text
Identifying Children With Special Health Care Needs:
Development and Evaluation of a Short Screening Instrument.
Ambulatory Pediatrics. Christina D. Bethell
PhD, MBA, MPH, Debra Read MPH, Ruth E. K. Stein MD, Stephen
J. Blumberg PhD, Nora Wells MEd, and Paul W. Newacheck DrPH,
vol 2, 2002, pages 38–48. Full
Text
Comparison of the Children With Special Health Care Needs
Screener to the Questionnaire for Identifying Children With
Chronic Conditions—Revised. Ambulatory Pediatrics.
Christina D. Bethell PhD, MBA, MPH, Debra Read MPH, John
Neff MD, Stephen J. Blumberg PhD, Ruth E. K. Stein MD, Virginia
Sharp MA, and Paul W. Newacheck DrPH, vol 2, 2002, pages
49–57. Full
Text
PowerPoint Presentation 
National
CSHCN Survey Final Results, May 2003
Peter C. Van Dyck, MD, MPH
Monitoring
MCHBs Six Core Outcomes for CSHCN,
May 2003
Paul Newacheck, DrPH
Building
Community-Based Systems of Care for Children with Special
Health Care Needs: A National Perspective.
By Paul W. Newacheck, Dr. PH
University of California, San Francisco
State
Approaches to Measuring and Monitoring Healthy People 2010
Outcomes for CSHCN - Presented at the AMCHP Annual Meeting-
March 2, 2002
Moderator:
Diana Denboba, Public Health Analyst, MCHB
Panelists:
Richard Roberts, Early Intervention Research Institute,
Utah State University
Diane Behl, Early Intervention Research Institute, Utah
State University
Linda Price, South Carolina Children’s Rehab Services
Pete Bailey, South Carolina Office of Research and Statistics
Sarah O’Brien, South Carolina Children’s Rehab
Services
2005-2006 National Survey of Children
with Special Health Care Needs
Source:
AMCHP Fact Sheet
What’s New for the 2005-2006 Questionnaire?
- Slightly revised questionnaire to improve measurement
of the following topics:
- Functional limitations
- Assistance provided to parents with arranging or
coordinating care
- Transition to doctors who treat
adults
- Ease of use of community-based services
- States have
the opportunity to add questions to the survey. States
are invited to work with MCHB and SLAITS staff to identify
topics that would enhance the survey’s content.
The approximate cost to States is $13,000-$15,000 per
minute per State. If
enough States are interested in the same additional topics,
standardized short batteries of questions can be developed
to permit interstate comparability. The SLAITS team will
work with States to develop the questions and, if necessary,
will discuss options for testing those questions.
What’s New for the 2005-2006 Sample?
- Sample size may be expanded from
750 to 1,000 completed interviews for CSHCN in every
state.
- Design may include a sample of healthy children
who will receive an abbreviated questionnaire.
- States have the opportunity to further increase
the sample size. The cost varies widely based
on the size of the existing NIS sample for the state.
For 500 additional completed interviews, the
approximate cost to States is $38,000-$225,000. States
expected
to have the highest costs for adding sample are
AK, AR, CO,
IA, ID, KS, KY, MN, MS, NE, NM, OR, SD, UT, and WY.
For more information, view the announcement from MCHB
by clicking
here. You can also contact SLAITS staff at slaits@cdc.gov,
or visit SLAITS online at www.cdc.gov/nchs/slaits.htm,
or contact Dr. Michael Kogan, Director of MCHB’s
Office of Data and Information Management, at mkogan@hrsa.gov.
Last Updated
March 7, 2007
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