Prior Year NSCH and NS-CSHCN Data Documents and Resources

This newsletter invited AMCHP attendees to visit our booth and attend our data workshop and ACEs meeting. Additionally, we highlight our just-released chartbook on children with Autism Spectrum Disorder and their families, using data from the NSCH, NS-CSHCN, Pathways, and NHIS, as well as two interesting data snapshots – the Rural Urban Commuting Area profile and the U.S. state comparison maps.

Read about the DRC website’s updated look and feel, and click on the links to check it out and give us feedback! This newsletter also announces the addition of two new features to our interactive data query: state- and census division-level NHIS data, and a special section for Title V National Performance Measures and National Outcome Measures in the NSCH and NS-CSHCN.

Learn about several updates to the DRC website in this newsletter. First, 4 different NHIS cleaned and coded datasets are now available to download. We also describe our new Autism Spectrum Disorders portal, as well as new tools for comparing Title V National Performance and Outcome Measures (NPMs and NOMs) across states (maps and hot-spotting tables). Finally, Virgin Islands data on NPMs and NOMs from the 2011/12 NSCH can now be accessed on the DRC's interactive data query!

This newsletter introduces several new features available on the DRC website, most notably the Maternal and Child Health Measurement Portal, which includes 12 measure set profiles and a searchable compendium of over 800 MCH measures, and the (coming soon) tailored, customizable profiles which allow users to create profiles of NSCH data by several key MCH frameworks. We also highlight data-in-action around ACEs and positive health.

In 2017, we debuted a new format and approach to the newsletter. It now focuses on the CAHMI as a whole, with updates from all projects including the DRC, MCH-MRN, Family Engagement Tools, and more! In this edition, we introduced the mobile optimized version of the Well Visit Planner, shared our plans for the AMCHP conference, and invited users to join the MCH-MRN.

Pediatric home health in the United States is a vast market. Families provide about 1.5 billion hours of care for their children each year, which would be the equivalent of about 35.7 billion dollars if replaced with professional home health care, according to recent data. This article presents the findings of a study conducted by researchers from USC, Boston Children's Hospital, and Rand Corp., in which they used data from the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) to determine the economic and labor tolls that caring for young loved ones with special health care needs can have on American families.

Suspicions of links between vaccines and conditions such as ADHD have persisted for years no matter how many studies have proven otherwise. More recently, concerns about vaccines and Sudden Infant Death Syndrome (SIDS) have been making headlines. This article is about a study that addressed the suspicion of links between ADHD, SIDS, and vaccines. The study cited data from the 2003, 2007, and 2011 NSCH to present state-level ADHD prevalence. Overall, the study found that neither SIDS nor ADHD rates were influenced by vaccination coverage. 

CAHMI's own Dr. Christina Bethell receives recognition for her presentation at the 2016 Adverse Childhood Experiences Conference in San Francisco, hosted by the Center for Youth Wellness and sponsored by the California Endowment, Kaiser Permanente, and Genetech. She presented graphs and charts from the Data Resource Center correlating Adverse Childhood Experiences (ACEs), which found that almost half of US children have experienced one or more ACEs. Dr. Bethell emphasized that "ACEs is not destiny, but something that we can prevent and heal."

This article addresses how mental health and counseling services in public schools have not kept pace with the staggering amount of students who are in need of mental and emotional support. Children of color are especially harmed by the nationwide shortage of school-based support programs. About 35 million children in the United States are living with emotional and psychological trauma, according to 2012 National Survey of Children's Health data available at the Data Resource Center. However, less than a third of these children have access to a school psychologist or even a social worker. African American, Hispanic, and Native American children are not only more likely to experience multiple traumas, but also to live in poverty. Even so, little attention has been paid to the link between trauma and disruptive behavior in classrooms. Rather than addressing behavioral issues through disciplinary action, schools should provide support to students who may be under severe psychological distress. The Data Resource Center has a strong focus on Adverse Childhood Experiences (ACEs) and resilience, especially among children in Baltimore.

Nebraska's Department of Health and Human Services was recently awarded a $12 million grant to support children with mental and emotional health needs. The grant was provided by the Substance Abuse and Mental Health Services Administration (SAMHSA), a branch of the US Department of Health and Human Services. The goal of the grant is to streamline access to mental health services so that Nebraskan families will no longer have to navigate complex, inefficient systems of care on their own. The writer of this article consulted the Data Resource Center for Child and Adolescent Health for statistics regarding the prevalence of mental and behavioral health disorders among children in Nebraska. According to data available at the DRC, over 37,000 children in Nebraska experience behavioral health disorders. The 2014 National Health Survey indicates that about 5 percent of children have severe emotional and behavioral difficulties that cause substantial impairment in functioning at home, at school, or in the community.

This article references the 2011-2012 National Survey of Children’s Health to illustrate the frequency of ACEs in Alaska. Namely, 40% of Alaska's children age 5 or under have experienced at least one adverse event and 15% have experienced two or more. Among children ages 6 to 11, 52% have experienced at least one adverse event and 27% have experienced two or more. An October 2013 study published in the journal Science found that reading literary fiction helps children better understand the complex social relationships we confront in life. The author states that it is critical that Alaskan children read to develop the emotional intelligence to manage their emotions, set and achieve their goals, build relationship skills, and make responsible decisions. By fostering socio-emotional skills, children have a better chance of avoiding depression, violence and other serious mental health problems, according to the Collaborative for Academic, Social, and Emotional Learning.

In this article, Lynn Dolce, director of foster care mental health at the San Franciscan Department of Public Health, urged school leaders at a conference of the Vermont Superintendents Association and Vermont Council of Special Education Administrators to build a “trauma informed educational system” that involves educators and the community. She discusses the need for a coordinated program to help students in Vermont schools and early education centers came from the apparent increase in children dealing with toxic stress at home, which negatively affects their ability to learn. In the Winooski School District, 35% of students are refugees and there is a growing number of students in families facing poverty and addiction. This article used data from the National Survey of Children’s Health to illustrate the frequency of adverse family experiences in Vermont - 1 in 8 children in Vermont have experienced 3 or more types of adverse family experiences. Dolce recommended that teachers begin teaching from a trauma lens to see how past experiences may cause current behavior. For example, children in a school were disturbed when chairs scraped the floor because it reminded them of gunfire. A solution to this problem was to put tennis balls on the feet of the chairs.

The Department of Health and Human Services rejected a grant proposal that would fund more treatment options for low-income pregnant women or mothers who abuse drugs and are at risk of becoming homeless in New Hemisphere. Hope on Haven Hill, a treatment center, hoped to gain the additional funding to house six pregnant women that would receive substance abuse treatment and parenting skills. The article called the drug abuse problem in New Hampshire a family problem. This article cited the 2011/2012 National Survey of Children’s Health to show that nearly 10% of children up to age 11 in the Granite State have lived with someone who had a “problem with alcohol or drugs”. There is also a stigma that surrounds drug abuse that can prevent parents from seeking help. To illustrate, mothers are often afraid to seek help because they are afraid that their children will be taken away. By creating a culture in America that views drug abuse as a disease, an effort to break the cycle of addiction within a family may be achievable.

This article discusses a presentation delivered by Ashley Merianos at the Pediatric Academic Societies meeting entitled "Tobacco Smoke Exposure and Health Care Utilization among Children Nationwide." The presentation utilized data from the 2011/12 NSCH which was accessed via the DRC. The study showed that living with smokers or being exposed to smoke in the home increased health care utilization, both in a doctor's office and in the emergency room.

A nationally representative study in the Journal of Developmental and Behavioral Pediatrics found ‘no difference’ in general health, emotional difficulties, coping, and learning behavior comparing children with same-sex and different-sex parents in stable relationships. The lead researchers of the study commented that, independent of family structure, “strong relationships are important contributors to good child outcomes.” The study used data from the National Survey of Children’s Health to compare child health outcomes of female same-sex parent households and different-sex parent households. Male same-sex couples were not included because of the small number of households in the dataset that met the study criteria. This study received coverage on Vox, the Daily Mail (UK), CNN,Medical Daily, Science Daily, ThinkProgress, Romper, Fox News, and more.

A new study released in the Maternal and Child Health Journal analyzed trends in "medical home" care for children in the U.S. using the 2003, 2007, and 2011-12 National Survey of Children’s Health. The patient-centered medical home model emphasizes primary care that is comprehensive, continuous, accessible, and family- centered, where holistic health care is provided by a professional with a close personal relationship with the patient. Overall, the study found that there were improvements in access and continuity of care from 2003 to 2012, but a decline in comprehensive and family-centered aspects of care. Further, kids with multiple risk factors – including race, household language, poverty level, parent education level, and especially health insurance coverage – experienced poorer care. Specifically, uninsured kids saw an increase in continuity of care between 2003 and 2012, but experienced a decline in access, comprehensiveness, and family-centered aspects of care. The authors concluded by imploring the public health community to dedicate more resources to enhancing care for uninsured children; otherwise, this population will continue to be exposed to structural health risk.

A new study published by University of Alabama Birmingham researchers citing National Survey of Children’s Health data found that ADHD prevalence is about twice as high among children with non-correctible vision problems – like color-blindness or lazy eye – compared to other children. The study was prompted after lead researcher Dawn DeCarlo began noticing vision impairment and ADHD comorbidity in her patients. DeCarlo warns that a causal relationship has not been established, suggesting that concerned parents of visually-impaired children first seek optical care for their child before worrying about their child developing ADHD. 

Using data from the 2011/12 National Survey of Children’s Health, researchers from the University of Michigan Medical School have published new research in the journal Pediatrics concluding that children with special health care needs (CSHCN) from immigrant backgrounds are significantly less likely to receive coordinated care within a medical home. Only around one in four CSHCN who have emigrated to the U.S. have a medical home, compared to about half of U.S. born children. Medical home access of CSHCN born in the U.S. to immigrant parents and of non-CSHCN immigrant children indicates similar disparities. The medical home component most frequently lacking was family-centered care.  https://publications.aap.org/pediatrics/article-abstract/137/1/e20153221/52855/Immigrant-Families-Children-With-Special-Health?redirectedFrom=fulltext

Researchers from the University of Pennsylvania and Johns Hopkins University compared health care access indicators between publicly and privately insured children in the 2003, 2007, and 2011-12 National Surveys of Children’s Health. They concluded that Medicaid and CHIP beneficiaries were significantly more likely to receive preventative physical and dental health checkups. Privately insured children with special health care needs (CSHCN) were also found to experience significantly greater difficulty accessing specialist services, with a lower likelihood of care always meeting the child’s needs than those insured by Medicaid or CHIP. Out-of-pocket costs were also significantly more common for caregivers of privately insured children; indeed, the commercial health insurance market – through increased cost-sharing – may be creating barriers to access despite higher costs to families. 

It may seem like common sense, but researchers at Ball State University have gleaned that the presence of outdoor amenities in a neighborhood is linked to a significant improvement in obesity rates and physical fitness outcomes, based on an analysis of the 2007 National Survey of Children’s Health. Significant differences in BMI were present comparing children with and without access to places for outdoor recreation, with findings varying across gender, race, family income, and the presence of other facilities. Interestingly, the positive impact of park access was found to be greater among children in unsafe neighborhoods, suggesting viable paths for health and civil policy. 

Researchers at the Boston Children’s Hospital investigated the relationship between ADHD diagnosis and autism spectrum disorder. Using NSCH data, they concluded that an earlier diagnosis of ADHD is often associated with alate diagnosis of autism, a disorder where starting early matters. The researchers hypothesize that since both diseases share some similar symptoms, ADHD masks the autism symptoms to many pediatricians and parents who believe they already have a fitting diagnosis. 

Also check out this August article referencing DRC data for a personal look at why early intervention for children with special needs really matters.  

Researchers using NSCH data explored a number of dynamics surrounding age of ADHD diagnosis. They found that children under 6 were more likely to be diagnosed by a psychiatrist than a pediatrician, and that younger children generally received more attention from specialist healthcare professionals and community support mechanisms. 

NS-CSHCN data were used in a recent study of health literacy among parents of children with special health care needs. Health literacy has been recognized as an important indicator of the quality of health care self-management, and parent literacy is an understudied area of pediatric care quality. The study pointed to new areas for research and improvement, including the relationship between care utilization and cost and parent health literacy in an inpatient setting. 

A study published in the Annals of Allergy, Asthma, and Immunology authored by researchers at Brown University strengthened previous research relating childhood stress to the development of asthma. Researchers led by Dr. Robyn Wing examined data from the National Survey of Children’s Health, concluding that the more adverse childhood experiences such as the death of a family member, divorce, or extreme poverty that a child has been exposed to, the higher their risk for developing asthma. Dr. Wing explained this correlation biologically – acute or chronic stress causes physical symptoms that can change our body’s production of hormones, which leads to developmental implications. 

Health analysts at the Centers for Disease Control have identified that while most children with ADHD received either medication treatment or behavioral therapy, many do not receive treatment in line with a 2011 ADHD best practices guideline. 2009-10 National Survey of Children with Special Health Care Needs data revealed that less than 1 in 3 children ages 6-17 and only half of children ages 4-5 receive a recommended treatment balance; instead, medication is often used as a first resort over recommended behavioral therapy.

Recent research suggests that adverse childhood experiences, such as severe poverty, the incarceration of a parent, or the death of a family member, leave a permanent developmental imprint on children. The magnitude of childhood trauma nationwide is not to be underestimated – a new study in the journal Health Affairs directed by CAHMI director Dr. Christina Bethell found that 48% of children in the 2011-12 National Survey of Children’s Health sample had experienced one or more traumatic childhood events. These findings prompt further investigation into “trauma-informed” medical care and wellbeing strategies specific to the experiences of any given child. 

A new study published in the Journal of Health and Social Behavior examines the health disparities that children with incarcerated parents face as a vulnerable population. Using 2011-12 National Survey of Children’s Health (NSCH) data, researchers concluded that having a parent in jail has a greater association with increased rates of behavioral problems like ADHD as compared with groups who experience other potentially traumatic events, like divorce or the death of a parent. Consistent with massive disparities nationwide in incarceration rates for blacks and whites, black children are far more likely to experience a parent in jail and are thus at an increased risk of developmental and behavioral disorders. As the incarceration rate in the US continues to climb, further research on the impact of incarceration on child health and wellbeing is warranted. For more information, see the recent report (using NSCH data) from Child Trends entitled Parents Behind Bars: What Happens to Their Children?

Susan G. Zepeda, the president of Kentucky’s public-interest health foundation, has objected to US House Appropriations Committee legislation that would allow schools waivers to opt out of school nutrition standards enacted by the Department of Agriculture in 2010. Citing DRC data, Zepeda demonstrated that as an alarming 35.7% of children in her state are obese, parents and Kentuckians overwhelmingly approve of the USDA meal standards as a countermeasure to the obesity epidemic. Zapeda’s convictions lie in direct conflict with the unsuitably named School Nutrition Association – a special interest trade group of food officials representing companies like Coca-Cola and Domino’s Pizza – which advocates for the waivers.  

New research suggests a link between ADHD diagnosis and the incidence of traumatic childhood experiences. Researchers lead by Nicole M. Brown examined data from children ages 6-17 from the National Survey of Children’s Health, finding that children diagnosed with the learning disability saw a higher prevalence of all nine adverse childhood experiences (ACEs) included in the survey. Brown’s team also noted that children who experienced many instances of childhood trauma take ADHD medication at higher rates, and were more likely to have their ADHD rated as ‘severe’ by their parent. Further research surrounding the prevalence and types of adverse experiences in children with ADHD will likewise be instrumental in guiding the improvement of ADHD diagnostic accuracy and treatment. 

Christina Bethell of the DRC presented at the First National Summit on Adverse Childhood Experiences (ACEs), co-hosted by Institute for Safe Families and the Robert Wood Johnson Foundation in Philadelphia May 2013. Please see Dr. Bethell's presentation here titled "National and State Data on ACE Risk and Resilience: The Call for Mind/Body Interventions", which starts at 00:26:15. 

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 report is explain in this video and has been picked up by the press.

The DRC's Complementary and Alternative Medicine (CAM) Profiles were recently featured in a "twitter chat" on use of CAM therapies for children lead by AAP's Section for Integrative Medicine and the National Center for Complementary and Alternative Medicine (NCCAM)!

Dr. Bethell was featured in AMCHP's monthly newsletter, PULSE, in a discussion of mindfulness techniques and their relation to maternal and child health. Mindfulness and MCH: Cultivating the Art and Science of Inside-Out Leadership

GoBeyond interviewed Dr. Bethell at this year's AMCHP Conference. Dr. Bethell discusses the importance of a resource like the DRC for advancing the quality of child and adolescent health.

The Oregon Health & Science University, Health Care, Home, School differ for Children With Special Health Care Needs

The Oregon Health & Science University, Study Finds States Vary in Children’s Health; Gaps Exist in Insurance, Quality Care Across Sectors

Lucile Packard Foundation for Children’s Health, California Ranks Last in U.S. on Index Measuring System of Care for Children with Special Health Care Needs, Study Finds 

U.S. News & World Report, Child Obesity Rates Going Up

Reuters, Snacks mean U.S. kids moving toward "constant eating"

United Press International, 6.7M children have no health insurance

The National Initiative for Children's Healthcare Quality, Child Policy Research Center and Child and Adolescent Health Measurement Initiative Release

Kansas Health Institute, New child health data available