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Helping Children Live to the Fullest by Understanding Developmental Disabilities

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CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is committed to understanding developmental disabilities and other conditions in order to help children and their families get the help they need.

NCBDDD works to understand conditions that affect the development of children, such as attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), hearing loss and vision impairment, and other disorders (for example, fragile X syndrome and spina bifida). About 1 in 6 children in the United States have a developmental delay or disability. NCBDDD looks at how common these conditions are, possible causes and factors that put children at risk, how to keep children safe during an emergency, and ways to improve early identification of developmental delays so that children can get services and support as early as possible.

Budget and Funding

Accomplishments

  • Educated healthcare providers about the effectiveness of the early hearing detection and intervention (EHDI) guidelines. The EHDI 1-3-6 guidelines recommend that children be screened for hearing loss by one month of age, diagnosed by three months of age, and enrolled in intervention by six months of age. A study published in the journal, Pediatrics, found that children with hearing loss were more likely to have larger vocabularies if they had received a diagnosis by three months and intervention by six months. This is the first study to explore whether meeting the 1-3-6 EHDI timeline can improve vocabulary outcomes of children with hearing loss in both ears.
  • Developed innovative resources that promoted developmental monitoring and screening to help identify children with developmental delays and disabilities as early as possible. Parents can use the Learn the Signs. Act Early. Milestone Tracker App to monitor their child’s development and get tips for taking action when there is a concern. Where is Bear? A Terrific Tale for Two-Year Olds is an award-winning book that engages children while parents learn about important child development milestones. Thanks to the 45 state and territorial Act Early Ambassadors and other partners, Learn the Signs. Act Early. materials reach families through existing programs nationwide.
  • Provided information to encourage better support of children with mental, behavioral, and developmental disorders. A new CDC study found that families in rural areas raising children with mental, behavioral, and developmental disorders might face greater challenges than those living in urban areas. CDC published a policy brief outlining potential policies and practices that could benefit families in rural areas and an article that examined the role of public health in identifying children at risk for delays in their development and learning.
  • Hosted the first CDC pediatric-focused multi-state emergency preparedness exercise to help states across the nation prepare to take care of children’s needs, including the needs of children with disabilities, during public health emergencies, such as disease outbreaks, earthquakes and weather-related emergencies. The exercise was evaluated and the results indicated that cross-state partnerships were established or strengthened, participation in the exercise enhanced emergency preparedness-related capabilities specific to children, and additional exercises of this type can enhance the capacity for local communities to be prepared for emergencies – ultimately protecting more children in times of crisis.
  • Published seven peer-reviewed studies of data from the Study to Explore Early Development (SEED), the largest study in the United States to help identify factors that may put children at risk for autism spectrum disorder (ASD). These studies focused on a range of topics, including risk factors, genetic associations, and health conditions in children with ASD and other disabilities. CDC also collected information from 11 communities for the Autism and Developmental Disabilities Monitoring (ADDM) Network on the prevalence and characteristics of ASD among 8-year-old children during 2014.
Every hearing screening and intervention for children with hearing loss save approximately $200 million in additional education costs each year

Looking to the Future

Children with developmental or other disabilities and their families often face personal, social, and financial challenges. NCBDDD and its partners will work across healthcare, early learning, and other social service systems to improve the early identification of children with developmental delays, increase the connection of these children and their families to services, and provide tools and resources to help families facing personal, social, and financial challenges. Our mission extends to understanding optimal development at each stage of life, from early brain development and access to medical, developmental, and behavioral intervention services to the health of teens with autism spectrum disorder. NCBDDD paves the way to help families and children get the support they need.

Notable Scientific Publications

Danielson M, et al. A National Profile of Attention-Deficit Hyperactivity Disorder Diagnosis and Treatment Among US Children Aged 2 to 5 Years. J Dev Behav Peds. 2017;38(7):455-64.

Durkin MD, et al. Autism Spectrum Disorder Among U.S. Children (2002-2010): Socioeconomic, Racial, and Ethnic Disparities. Am J Public Health. 2017;107(11):1818-26.

Dziuban EJ, et al. A Child’s Health is the Public’s Health: Progress and Gaps in Addressing Pediatric Needs in Public Health Emergencies. Am J Public Health. 2017;107(S2):S134-S137.

Grosse S, et al. CDC Grand Rounds: Newborn Screening for Hearing Loss and Critical Congenital Heart Disease. MMWR Morb Mortal Wkly Rep. 2017;66(33):888-90.

Kaminski J, et al. Evidence Base Update for Psychosocial Treatments for Disruptive Behaviors in Children. J Clin Child Adolesc Psychol. 2017;46(4):477-99.

Maenner MJ, et al. Development of a Machine Learning Algorithm for the Surveillance of Autism Spectrum Disorder. PLoS One. 2016;11(12):e0168224.

Schieve LA, et al. Maternal and Paternal Infertility Disorders and Treatments and Autism Spectrum Disorder: Findings From the Study to Explore Early Development. J Autism Dev Disord. 2017;47(12):3994-4005.

Soke GN, et al. Factors Associated with Self-injurious Behaviors in Children with Autism Spectrum Disorder: Findings From Two Large National Samples. J Autism Dev Disord. 2017;47(2):285-96.

Tyler ET, et al. Behavioral Health Integration in Pediatric Primary Care: Considerations and Opportunities for Policymakers, Planners, and Providers. Milbank-Supported Report. 2017.

Wiggins LD, et al. Homogeneous Subgroups of Young Children with Autism Improve Phenotypic Characterization in the Study to Explore Early Development. J Autism Dev Disord. 2017;47(11):3634-45.

Spotlight On: American Academy of Pediatrics | Autism Speaks

Developmental disabilities are some of the most significant child health issues facing American families. They include conditions, such as attention-deficit/hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and hearing loss. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) helps children live life to the fullest by providing a better understanding of these conditions and helping parents and healthcare providers make smart decisions so that children and their families get the support they need.

Developmental Milestone Monitoring

The mission of the American Academy of Pediatrics (AAP) is to attain optimal physical, mental, and social health and well-being for all infants, children, and adolescents and young adults. The Program to Improve Monitoring and Screening of Developmental Delays in Pediatric Practice—supported by NCBDDD funding—aims to raise awareness about developmental monitoring and screening among pediatric clinicians, early child-care providers, and families.

One of the program’s key activities was the successful implementation of a practice-based quality improvement project focused on improving developmental monitoring, screening, and referral in the pediatric primary care setting. One team stated, “As a result of this project, we communicate with families more concretely about what we’re looking for at each stage of development.” CDC’s Learn the Signs. Act Early. (LTSAE) shared resources with practice teams, resulting in teams routinely using LTSAE resources with families, enhancing the support of developmental monitoring and screening activities in practice, and ultimately enhancing pediatric patient care.

Tracking Autism’s Prevalence and Improving Screening Methods

Over the last ten years, Autism Speaks has joined with NCBDDD to support research that improves tracking of autism’s prevalence. During this time, CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network tracked a steep rise in diagnosed autism from 1 in 150 children in 2007 to 1 in 68 children today. This work is crucial for guiding healthcare organizations, schools, public health agencies and policymakers in organizing appropriate support for people with autism.

ADDM measures autism prevalence based on indicators in the school and medical records of 8-year-olds in sample communities across the United States. Recent studies have found significantly higher rates when researchers directly screen and evaluate children for autism in a community. Autism Speaks looks forward to working with NCBDDD to better identify children with autism – and do so at younger ages – in order to make sure they get the services that can enhance their success in school, daily life, and adulthood.

Early Hearing Detection and Intervention Regional Network Liaison Program

The AAP Early Hearing Detection and Intervention (EHDI) program focuses on linking the physician community at the national, state, and local levels to activities that support early hearing screening, diagnosis, factor assessment, and early intervention and follow up for children who are deaf or hard of hearing (D/HH). Supported by funding from NCBDDD, the AAP works with its members and other national partners to educate and engage pediatric clinicians by establishing collaborative partnerships with other clinical professionals and state EHDI programs. Through an AAP EHDI Regional Network Liaison program, a pediatrician member, representing an AAP district and membership, provides leadership, mentoring, and support to AAP EHDI Chapter Champions.

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