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Data in Action!
Rates of Parent-Centered Developmental Screening: Disparities and Links to Services Access
Publication
Published paper looking to assess the national and state prevalence of parent-completed developmental screening and evaluate associations between screening and receipt of an early-intervention plan for children at higher risk.

Data Briefs and Reports


This page contains a selection of short data briefs and longer reports written by both the Data Resource Center (DRC) and outside organizations, organized by topic or geographic focus.

For additional examples of data in action, see our Chartbooks page for survey-specific reports, our Data Snapshots page to explore data points on select topics, and our Publications page for peer-reviewed publications.

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Children with Special Health Care Needs

Who are CSHCN?
A two page overview of CSHCN including demographics, conditions and difficulties, health care utilization, school and home characteristics and how they are identified.

2009/10 NS-CSHCN: Exploring Health Conditions among CSHCN 
Overview of the 20 specific health conditions asked about in the survey among CSHCN, using data from the 2009/10 NS-CSHCN.

2009/10 NS-CSHCN: Exploring Functional Difficulties among CSHCN 
Overview of the 14 functional difficulties asked about in the survey among CSHCN, using data from the 2009/10 NS-CSHCN.

2009/10 NS-CSHCN: Comorbidity of Conditions and Difficulties among CSHCN 
Overview of the overlap between the 14 functional difficulties and the 20 specific conditions asked about in the survey among CSHCN, using data from the 2009/10 NS-CSHCN.

Prevalence of Specific Functional Difficulties among CSHCN with Each Condition
Details the prevalence of each of the 14 difficulties asked about in the 2009/10 NS-CSHCN among CSHCN with each of the 20 conditions asked about in the same survey.

Proceedings for the 2015 Symposium: Designing Systems That Work for Children with Complex Health Care Needs
This report is from a national symposium in December 2015 entitled "Designing Systems That Work for Children with Complex Health Needs", organized by the Lucile Packard Foundation. This symposium identified and discussed issues within the general child health care system that especially pertain to the care of children with complex health problems. The report cited 2011-2014 NHIS data to show how the uninsurance rate of children aged 0-18 years old has fallen over the past few years. It also cited the 2011 NS-CSHCN to show how much time families of children with special health care needs spend coordinating care.

A Needed Lifeline: Chronically Ill Children and Public Health Insurance Coverage 2008
Report on chronically ill children and access to health services by the Robert Wood Johnson Foundation.

It takes a Family: An Analysis of Family Participation in Policymaking for Public Programs Serving Children with Special Health Care Needs in California
This is a new report sponsored by the Lucile Packard Foundation, which takes a look at the current rules governing family participation in policymaking, and outlines recommendations for how California could better serve its children and families by including families and youth in the decision-making process. In addition to the full report, a two-page summary of its key points and recommendations is also available. 

Children with Special Health-Care Needs in North Dakota.
Using data from the 2009-2010 NS-CSHCN survey, this is the latest report designed to assist key stakeholders – policymakers, advocacy groups, community based organizations, and parents – in understanding the health and well-being of children with special health-care needs (CSHCN) in North Dakota.

Children with Special Health Care Needs in California: A profile of Key Issues (2009/10)
The CAHMI worked with the Lucile Packard Foundation for Children’s Health (LPFCH) to create this comprehensive report on the health and well-being of the state’s children with special health care needs (CSHCN) population. This report features data from the 2009/10 NS-CSHCN and provides a profile of demographic characteristics, physical, mental, and social functioning, and health and community service needs of CSHCN in California. It is a companion piece and update to the 2010 report written in collaboration with LPFCH.

The Affordable Care Act and Children with Special Health Care Needs: An Analysis and Steps for State Policymakers
A new report developed in January 2011 by the National Academy for State Health Policy (NASHP) for the Catalyst Center reviews and analyzes key provisions of the Affordable Care Act (ACA) relevant for CSHCN to help inform state policymakers’ decisions.

Children and Youth With Special Health Care Needs (CYSHCN) in Alaska
The Alaska Division of Public Health's Section of Women's Children's and Family Health uses data from the 2007 National Survey of Children's Health and the 2005/2006 National Survey of Children with Special Health Care Needs to create this Title V Needs Assessment report brief for their state.

AMCHP Health Care Reform Fact Sheet: What’s in it for Children and Youth with Special Health Care Needs?
The Association of Maternal and Child Health Programs (AMCHP) released a summary fact sheet in October 2010 to help state maternal and child health (MCH) programs understand and implement key provisions of the Patient Protection and Affordable Care Act (ACA)

Children with Down Syndrome: Families Are More Likely to Receive Resources at Time of Diagnosis Than in Early Childhood
This report from the U.S. Government Accountability Office (GAO) is based on an analysis of fee-for-service claims data and Medicaid claims data, interviews with specialists and advocacy groups, and an analysis of data from the 2005/06 NS-CSHCN on barriers to accessing needed services.

Prevalence of CSHCN in Milwaukee, WI: Using the Milwaukee MSA
This article, published in the Wisconsin Journal of Medicine, demonstrates using an interrelated survey approach to determine level of need and prevalence of CSHCN in the city of Milwaukee.

MCHB Core Quality Outcomes for CSHCN

MCHB Core Quality Outcomes for CSHCN
Overview of systems of care for children with special health care needs as measured by the federal Maternal & Child Health Bureau's Six Core Outcomes for CSHCN. The overall summary highlights data from the 2009/10 NS-CSHCN and describes CSHCN who are served by systems that meet all age-relevant core outcomes. Below are overviews of each core outcome and how they can help promote healthy development for CSHCN over the Life Course.

Autism Spectrum Disorder

National Profile of Children with Special Health Care Needs and Autism Spectrum Disorders 
Using data from the 2009/10 NS-CSHCN and 2011/12 NSCH, the Data Resource Center developed this three-page data brief on children with special health care needs (CSHCN) with Autism Spectrum Disorders (ASD). The brief describes characteristics of CSHCN who currently experience an ASD, the impact on families of having a CSHCN with ASD, as well as how health system performance and contextual factors from the home, school and neighborhood environments may affect CSHCN with ASD.

Summary of Data on CSHCN with ASD by Race or Ethnicity
These data summary tables come from the 2009/2010 NS-CSHCN and explore racial or ethnic disparities among children with special health care needs with Autism Spectrum Disorder. 

Impact of Health Insurance Type and Adequacy on Child Health, Family, and System of Care for CSHCN with ASD
Data from the 2009/10 NS-CSHCN were used to create these tables exploring how insurance impacts children and families experiencing special health care needs and Autism Spectrum Disorder. 

AMCHP Issue Brief: The ACA and CY with ASD-DD, February 2012 
This report by the Association of Maternal & Child Health Programs (AMCHP) examines the Affordable Care Act (AFA) and its impact on children with Autism Spectrum Disorders (ASD) and other Developmental Disabilities (DD). It uses data from the 2009/10 National Survey of Children with Special Health Care Needs to compare children with ASD/DD to other children with special health care needs on several key health and system performance measures. 

Challenges and Options for Estimating the Prevalence of Autism in Population Surveys
This report published in July 2016 by several professors at the Oregon Health and Science University addresses the challenges of estimating the prevalence of autism with population surveys. Both the NHIS and NSCH are evaluated as surveys that can be used to estimate the prevalence of autism spectrum disorders among children in the US.

An ASD Chartbook: Experience Matters - A View into the Health and Wellbeing of US Children and Families with Autism Spectrum Disorder

Drawing on four national surveys (the National Survey of Children's Health, the National Survey of Children with Special Healthcare Needs, the National Health Interview Survey, and the Pathways Survey), this chartbook presents a first-ever, comprehensive summary of key findings from data reported by families with ASD.

Complementary and Alternative Medicine (CAM)

National Profile of Complementary and Alternative Medicine (CAM) Use for Children with Emotional, Mental or Behavioral (EBM) Conditions or problems
Using data from the 2007 National Health Interview Survey (NHIS) and the 2009/10 National Survey of Children with Special Health Care Needs (NS-CSHCN) this data brief examines Complementary and Alternative Medicine (CAM) utilization and expenditures for Children with Emotional, Mental or Behavior (EMB) Conditions or Problems.

National Profile of Complementary and Alternative Medicine (CAM) Use for Children with Pain-Related Conditions or Problems
Using Data from the 2007 National Health Interview Survey (NHIS) and the 2008 Medical Expenditures Panel Survey (MEPS) this data brief examines Complementary and Alternative Medicine (CAM) utilization and comorbidity of conditions for Children with Pain-Related Conditions or Problems.

Adverse Child and Family Experiences

Hope and the New Science of Thriving: A Summit to Build the Field of Positive Health and Nurturance
In March 2016, the CAHMI and Health Resources in Action collaborated to coordinate and host a summit on "Hope and the New Science of Thriving," with participants from many fields, including research, health care, health systems, policy, philanthropy, and more. These proceedings summarize the pre-meeting survey results, summit presentations and discussions, and agreed-upon next steps.

Adverse Childhood Experiences Among Baltimore & Maryland’s Children
Adverse childhood experiences (ACEs) have been found to have a direct and synergistic impact on the healthy development and lifelong health of individuals. ACEs evaluated in prominent studies include experiences  ranging from extreme poverty, family problems, to experiencing violence, abuse, and discrimination. This document overviews the ACEs profile for children aged 0-17 in Baltimore.

Overview of Adverse Child and Family Experiences among US Children 
The recently released 2011/12 National Survey of Children's Health includes nine new measures of Adverse Child and Family Experiences. Learn more about the prevalence of these nine adverse child and family experiences nationwide, as well as variation across states and child subgroups in this new data brief. Associations between adverse child and family experiences, child and parent health, contextual factors, and resiliency factors are additionally described.

4 Essential Facts about Lifelong Health, School Success and Adverse Childhood Experiences among California’s Children
Adverse childhood experiences (ACEs) have been found to have a direct and synergistic impact on the healthy development and lifelong health of individuals. This report looks at data among California's children to determine four essential facts about lifelong health, school success and adverse childhood experiences. 

Overcoming Adverse Childhood Experiences: Creating Hope for a Healthier Arizona 
The Phoenix Children's Hospital collaborated with the Maternal and Child Health Bureau (MCHB), the National Center for Health Statistics (NCHS) and we, the Data Resource Center (DRC) created a brief about the status of health for children who have experiences adverse childhood experiences (ACEs).  

Overview of Adverse Childhood and Family Experiences in North Dakota
The North Dakota department of health teamed up with the CAHMI to create this data-centered overview of adverse childhood and family experiences in North Dakota. Using data from the 2011/12 National Survey of Children’s Health, the North Dakota department of health examined the prevalence of adverse child and family experiences in their state modeled after the ACEs national data brief created by the Data Resource Center for Child and Adolescent Health.  

State-specific Data Briefs and Reports

MCH Data Report Mental Health: Child and Adolescent 
In January 2016, the Washington State Department of Health released an overview of child and adolescent mental health indicators in the state of Washington. The report pulls data from the 2011 NSCH and the 2009 NS-CSHCN, retrieved from childhealthdata.org. Specifically, this issue reports the prevalence of behavioral and developmental disorders among children in Washington, as well as the percentage of children living in households with at least one parent with poor mental health status.

Hidden in Plain Sight: California Children Using Long-Term Care Services
This 2015 report by the Lucille Packard foundation addresses the struggles of children with special health care needs and their families. It cites data from the 2009/10 NS-CSHCN to illustrate the difficulties these parents face when coordinating care for their children and financing the cost of care.

New England Children with Genetic Disorders and Health Reform: Information and Recommendations for State Policymakers
This policy brief from the New England Genetics Collaborative used data from the 2009/10 NS-CSHCN to make policy recommendations to address gaps in health insurance coverage that affect families of children with genetic disorders.

MCH National Performance Measures
Overview of health outcome measures in regard to children with special health care needs. This 2014 report uses data from the 2009/10 NS-CSHN to compare Washington State's performance against the health outcomes of the United States as a whole.

The Health of Women, Infants, and Children: A Life Course Approach among Medicaid and Comparative Populations
Researchers from The Ohio State University put together this report looking at health and health conditions, health services utilization and access, and (for children) ACEs and protective factors among women, infants, and children in Ohio. The researchers used 2011/12 NSCH data from the DRC to provide some of the child health data points.

2012 Louisiana Report Card on Physical Activity and Health for Children and Youth
The Pennington Biomedical Research Center's 2012 Louisiana Report Card on Physical Activity and Health for Children and Youth uses data from the 2007 NSCH to assess environmental and neighborhood factors affecting the health of Louisiana's children. This report, distributed to legislators, policy makers, teachers, health care professionals, researchers and parents, examines Louisiana's built environment in relation to children and adolescent health.

Chart Book on the Health of Minnesota's Children
This online chartbook was compiled by State Health Access Data Center (SHADAC) to highlight how Minnesota is doing on a number of key indicators of child health. This report uses 2007 NSCH data.

2010 Burden of Oral Disease in Wisconsin
This report contains data from the 2007 NSCH on oral health among CSHCN in Wisconsin.

The Health of Washington State Report uses the NS-CSHCN and NSCH
This Health of Washington State report used findings from the 2001 NS-CSHCN and 2003 NSCH in their chapter on children with special health care needs

The DRC helps Kids Count in Maine
The Maine Children's Alliance compiled this comprehensive report on the physical, social, economic, and educational well-being of Maine's children.

Maine influences policy with DRC data
A report created by Maine Children's Alliance to partner with the Maine Kids Count databook, to provide policymakers with the information they need to improve mental health outcomes for Maine's children.

Outcomes by Income: Low-income children fare worse on many indicators
Action for Children in North Carolina used data in their publication “Outcomes by Income: Low-income children fare worse on many indicators” to examine how children fare on indicators of health, early care and education by income.

Colorado Health Report Card: Vigorous Exercise
This report is part of the Colorado Health Foundation's "2007 Colorado Health Report Card" looks at physical activity and medical home in healthy children in Colorado.

Health and Healthcare Among District of Columbia Youth
Large report on the health of Washington, DC children.

America's Health Starts with Healthy Children: How do states compare?
Chartbook on children’s health and its social and structural determinants.

Health Systems

Pediatric Medical Homes: Laying the Foundation of a Promising Model of Care, October 2011
This report by the National Center for Children in Poverty describes the medical home concept and explains how it has been defined, applied to children, and measured. It uses data from the 2007 National Survey of Children's Health to report on the number and characteristics of American children served by medical homes. It also discusses opportunities to leverage medical homes to improve medical care and achieve better health outcomes for young children, with a particular focus on the coordination of care for vulnerable children.

Securing a Healthy Future: The Commonwealth Fund State Scorecard on Child Health System Performance, 2011
The Commonwealth Fund produced a report assessing states’ performance on health care relative to achievable benchmarks for 20 indicators of children's access, quality, costs, and health outcomes. They included several data points from the 2007 National Survey of Children's Health.

Health Care Access and Utilization: Adolescents and Young Adults (NAHIC)
The National Adolescent Health Information Center (NAHIC) used data from the DRC in a report on health care access and utilization for adolescents and young adults.

Family Health and Wellbeing

Adoption USA: A Chartbook Based on the 2007 National Survey of Adoptive Parents
Official chartbook for the 2007 National Survey of Adoptive Parents, based off of the 2007 NSCH sampling design. 

National Parent Profile 
The Child & Adolescent Health Measurement Initiative (CAHMI) staff produced a 2-page report brief using data on parenting and family life from the 2007 National Survey of Children's Health.

Additional Data Briefs and Reports

America's Children: Key National Indicators of Well-Being
Large report that summarizes national indicators of children’s well-being from a variety of national surveys (including the 2007 NSCH). 

F as in Fat: How Obesity Threatens America's Future 2010
Large report on obesity in America (2010).

Early Warning! Why Reading by the End of Third Grade Matters
This KIDS COUNT Special Report from the Anne E. Casey Foundation uses data from the 2007 NSCH on families reading to young children and school-age children repeating one or more grades in school.

2009 Profiles of Latino Health
The National Council of La Raza (NCLR) answers one of twelve questions about Latinos and health care in this two-page fact sheet: "Which health care services do Latinos have trouble obtaining?". Data from the 2003 National Survey of Children's Health are included.

HPV Vaccine Update and Impact of Reported Adverse Effects
This brief on the HPV vaccine (page 4 through 7) is embedded in CityMatch's "City Lights" newsletter and contains data from the 2007 National Survey of Children's Health.

Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health
The National Academies of Science used data from the National Survey of Children’s Health in a report that offers a new framework for the health measurement of children.