DHDD Newsletter – March/April 2023

Newsletter-Human Development and Disability: Improving Health, Helping Children

A Note from the DHDD Director

Dear DHDD Partners,

As many of you will already be aware, DHDD released 2020 Autism and Developmental Disabilities Monitoring (ADDM) Network data findings this month. This data release takes place an entire year earlier than previous releases, and I am proud of all the hard work within the division to provide the latest autism spectrum disorder (ASD) data more efficiently and with the same data quality.

Established in 2000, the ADDM Network has been the only network to track the number and characteristics of children with autism spectrum disorder for more than 20 years. Since then, the network has expanded to 11 sites, and now includes surveillance data among 4-, 8- and 16-year-old children. This allows us to assess early identification of ASD, prevalence and characteristics of children with ASD, as well as healthcare needs and gaps in transition planning for adulthood.

The ADDM Network is also engaged in innovative approaches that provide actionable insights to help identify needs, plan services and provide support for individuals with ASD and their families. As part of a pilot, seven ADDM sites linked state-specific health and education data to develop statewide and county-level ASD estimates. This approach may be effective when resources are limited, and less detailed information is needed.

DHDD is also engaged in an exciting opportunity for developmental disabilities monitoring. Through the 2023 Consolidated Appropriations Act, the division has received funding to re-establish cerebral palsy surveillance within the existing ADDM Network. These surveillance activities can provide valuable information to help plan programs, services, and support for children living with cerebral palsy.

I am both proud of our achievements and excited for the future as we support the needs of our partners through ongoing surveillance, programs, and resources. As Autism Acceptance Month draws near, we’ve developed a partner toolkit that provides key messages, social media content, and educational materials you can use to promote awareness, inclusion, and connection for people with ASD to services and the broader community. We also posted a new webpage that features our latest key findings, ASD program overviews, and resources. I hope you’ll join us in raising awareness about autism and the importance of inclusion and connectedness for people living with ASD!


Karyl Rattay, MD, MS, FAAP
DHDD Director

Karyl Rattay, MD, MS, FAAP DHDD Director

In the Spotlight

CDC’s New Autism Report Finds Higher Prevalence, Shifting Demographics

A child sitting on the ground smiling with chalk in their hand as friends in the background play with chalk on pavement. Text overlay reads, “1 in 36 8-year-old children living in ADDM Network sites asterisk were identified with ASD in 2020.” Subtext reads, “Asterisk 11 U.S. Communities.”

CDC released two new reports from the Autism and Developmental Disabilities Monitoring (ADDM) Network. Findings include new patterns in prevalence by race/ethnicity and a novel analysis showing dramatic impacts of COVID-19 on early evaluation and identification of autism spectrum disorder (ASD). Established in 2000, the ADDM Network is the only network to track the number and characteristics of children with ASD and other developmental disabilities in multiple communities throughout the United States. Materials and resources, including the 2023 Community Report, are now online at www.cdc.gov/ncbddd/autism/new-data.html.

Easy-to-Read Content
Mom hugging son. Both wearing face masks.

Tools and Resources

New! Easy Read Content Portal

Easy Read summaries take difficult information and make it easier to understand. Check out DHDD’s new Easy Read portal. It’s your one-stop shop for all of our easy-to-read summaries! The summaries on this page were developed for people with disabilities and their caregivers, but they can be beneficial for all audiences to use. You can access the portal here. Please share with your networks!

Cerebral Palsy Awareness

A green ribbon representing Cerebral Palsy Awareness. March is Cerebral Palsy Awareness Month

March is National Cerebral Palsy Awareness Month. Cerebral palsy (CP) is the most common motor disability in childhood, and children with CP and their families need support. The recently signed Consolidated Appropriations Act, 2023, provides support to CDC to re-establish CP surveillance within its existing Autism and Developmental Disabilities Monitoring (ADDM) Network.

Here are 11 Things to Know about Cerebral Palsy.

Supporting Women with Disabilities to Achieve Optimal Health

An estimated 37.5 million women in the United States report having a disability. Women with disabilities require health care and health programs for the same reasons anyone else does—to stay well, active, and a part of the community. The conditions in which we are born, live, learn, work, play, worship, and age, known as social determinants of health – have a profound impact on health. Social determinants of health can magnify or diminish health disparities and challenges with accessing care for women with disabilities. Learn more about the challenges women with disabilities experience and how you can help support women with disabilities to achieve their optimal health.


ADDM Network Expands Surveillance to identify Healthcare Needs and Transition Planning for Youth

In this first ADDM Network report on children aged 16 years with ASD, CDC marks an expansion of ASD surveillance to help communities identify health care needs and gaps in transition planning for adulthood among youth with ASD. In 2018, five of CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network sites (Arkansas, Georgia, Maryland, Utah, and Wisconsin) began monitoring autism spectrum disorder (ASD) among 16-year-old adolescents who were initially identified as having characteristics of ASD in 2010. Read the key findings: Adolescents with Autism Spectrum Disorder: Diagnostic Patterns, Co-occurring Conditions, and Transition Planning.

Study Shows Linking Statewide Data for ASD Prevalence is Effective

A new study found that linking statewide health and education data is an effective way for states to have actionable local autism spectrum disorder (ASD) prevalence estimates when resources are limited. Read the key findings: Statewide county-level autism spectrum disorder prevalence estimates-seven U.S. states, 2018.

Trends in Stimulant Prescription Fills in the US, 2016-2021

Stimulant prescriptions, most commonly used to treat ADHD, increased by more than 10% for adults during the first year of the COVID-19 pandemic. Employer-sponsored health insurance claims data were used by CDC researchers to describe trends in stimulant prescription fills and patient characteristics before and during the COVID-19 pandemic (2016–2021). The proportion of people with prescription stimulant fills increased more than 10% among females aged 15–44 years and males aged 25–44 years during 2020–2021. This sharp increase highlights the need for ADHD clinical practice guidelines to address diagnosis and treatment in adults.

Helpful Tools for Mental Health Screening in Schools

Multiracial teacher and children in school hallway

A CDC study published in Psychology in the Schools provides support for the usefulness of teacher report in mental health screening in elementary and secondary schools. CDC researchers and collaborators from Ohio University, University of Colorado, University of South Carolina, and University of Florida considered the results from the Behavior Assessment System for Children-2 Behavioral and Emotional Screening System (BASC-2-BESS) and the Strengths and Difficulties Questionnaire (SDQ) as conducted by teachers, and compared the results from a more in-depth diagnostic tool used by parents. All screening tools performed moderately well. These findings can inform the use of teacher report in mental health screening. Mental health screening in schools can be a meaningful part of identifying at-risk students and service delivery to students who need them, potentially improving student outcomes. Read the journal article to learn more.

Partner News and Announcements

COVID-19 Public Health Emergency Expires May 11, 2023

The Public Health Emergency (PHE) for COVID-19 is expected to expire at the end of the day on May 11, 2023. The PHE action means that the US federal government will transition from the emergency phase of the COVID-19 response, but CDC’s commitment to equitable health outcomes will continue. CDC remains dedicated to preventing severe illness and death from COVID-19, particularly for populations at higher risk such as some people with disabilities and individuals who are immunocompromised. CDC will continue working with other federal government agencies and offices to maintain equitable access to vaccines, testing, and therapeutics to the extent possible.

For additional details on the PHE expiration, please check out this Department of Health and Human Services fact sheet.

Medicaid Continuous Coverage Requirement Ends March 31, 2023

In 2020, the Centers for Medicare and Medicaid Services waived certain Medicaid and Children’s Health Insurance Program (CHIP) requirements to help people keep health coverage obtained during the COVID-19 pandemic. A new law was signed in December 2022 that ended the continuous enrollment condition as of March 31, 2023. States have up to 12 months to initiate renewals—a process commonly referred to as “unwinding.” Most adult Medicaid enrolled families are unaware. This is an important moment to get the word out and partner to help people keep their existing coverage or get connected to new coverage. View the CMS unwinding guidance and toolkit for more information.

HHS Child and Adolescent Health Emergency Planning Toolkit

HHS has developed a toolkit that addresses the needs of children and youth with special health care needs (CYSHCN) in emergency preparedness, response, and recovery. The resource provides public health, healthcare, and emergency personnel with basic planning steps, key resources and promising practices, and explains data and information to be used for emergency planning for CYSHCN. It includes modules on preparedness, response, and recovery planning, as well as several case studies. Throughout, the toolkit promotes understanding of health equity and applying the social determinants of health, developing organizational resilience, and understanding of the needs of CYSHCN population before, during, and after emergencies.

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DHDD’S mission is to lead inclusive programs to optimize the health and development of children and adults with, or at risk for, disabilities.

Newsletter Footer-National Center on Birth Defects and Developmental Disabilities, Division of Human Development and Disabilities