DHDD Newsletter – June 2021

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

A Note from the DHDD Director:

Dear DHDD colleagues –

Georgina on a cargo ship

I hope you are doing well and staying healthy. Over the past 5 months, I have been temporarily assigned to work as the Chief Medical Officer for the Georgia Department of Public Health. It has been a great opportunity to work at the state level implementing the rollout of COVID vaccinations. Earlier in June, I was honored to have received an “Impact Award” from the Georgia’s Department of Human Services’ Commissioner Crittenden during the Healthy Communities Summit for work vaccinating seniors in Georgia. I also had the opportunity to travel to many parts of the state to facilitate vaccination in different settings – sailors on cargo ships in Savannah’s port (see photo of me “driving” the ship!), migrant workers on farms, people with disabilities at supported employment locations, rural Georgians outside grocery stores and in local churches and many other sites. I accompanied the Health Commissioner when she spoke at the We Can Do This vaccination event at Clarke University where Vice President Kamala Harris also spoke. This was certainly a one-of-a-kind experience and I feel honored to have been part of this work.

There is a lot of great work going on in DHDD and several observances coming up in the next few weeks. Further, DHDD staff continue to develop COVID-19 resources for people with ID/DD who have extreme low literacy and their caregivers, as well as new Easy to Read information, and ASL videos. Please see more information on those resources in our newsletter!

I remain deployed to the COVID-19 response for a percent time but look forward to returning full time to DHDD on July 1.

All the best,


Li-Ching Lee

A long-time colleague, grantee, and friend of DHDD, Li-Ching Lee, PhD (1966-2021) passed away on May 20th in Baltimore, Maryland after a long, but private battle with cancer. Li-Ching was the Principal Investigator of the Maryland Autism and Developmental Disabilities (ADDM) Network site and she was a key epidemiologist since the start of ADDM. In addition, she has been a long-standing investigator in the Study to Explore Early Development (SEED). Li-Ching also collaborated with NCBDDD colleagues on a Folic Acid follow-up study in China that set the stage for a current project she led, an NIH-funded study on the impact of air quality on risk for ASD and neurodevelopmental disorders in Beijing.

Li-Ching Lee at a restaurant

Li-Ching was a Senior Scientist in the Departments of Epidemiology and Mental Health at the Johns Hopkins Bloomberg School of Public Health. She was the Associate Director for Global Autism Research in the Wendy Klag Center for Autism and Developmental Disabilities. Li-Ching was an active researcher specializing in the epidemiology of autism and other developmental disorders and her work transformed the awareness of autism and paved the way for autism intervention in the US, Taiwan, Bangladesh, and mainland China (see “Li-Ching Lee Reaches Out”). Li-Ching was dedicated to teaching and to mentoring students and she was a gracious collaborator.

Through the many years of collaboration with Li-Ching, several DHDD personnel were able to get to know the incredible character, intellect, and heart of Li-Ching. She loved food and delighted in each meal! She was forever humble, always elevating the accomplishments of others and graciously finding ways to complete complicated projects, even while dealing with significant health challenges behind the scenes. Li-Ching was extraordinarily dedicated to her family in Taiwan and she was very close to her niece in Philadelphia.

Li-Ching Lee is survived by her father, four siblings, and 20 nieces and nephews. Family has been honoring her in Taiwan this past month and a larger memorial service will be planned later in the year. Donations in her memory to the Wendy Klag Center will support student travel and internships.

Li-Ching Lee is greatly missed. Her tenacity, intellect, and heart cannot be matched.

In the Spotlight

Disability and Health Data System: 2021 Update

DHDS running on a computer tablet

NCBDDD’s Disability and Health Data System (DHDS) has been updated to include 2019 Behavioral Risk Factor Surveillance System (BRFSS) data. DHDS provides quick and easy access to data on demographics and health topics among adults with and without disabilities across the United States. Epidemiologists, researchers, and public health professionals can use these data to inform state and local health promotion activities to improve the health and well-being of people with disabilities.

DHDS includes BRFSS data analyzed from 2016, 2017, 2018, and 2019. Visit the Disability and Health Data System to learn about health differences between people with and without disabilities in your state and some territories.

In addition to the DHDS dashboard, CDC also has Disability & Health State Profiles that have been updated using 2019 BRFSS data. These fact sheets provide an overview of disability in each state, including the percentages and characteristics of adults with and without disabilities.

Save the Date! DHDS: Using Data to Take Action

Please join us on Monday, July 19 at 3PM ET for a webinar highlighting DHDS updates, hosted by the Association of University Centers on Disabilities (AUCD) and the Association of State and Territorial Health Officials (ASTHO).

Register here!

Webinar Description:

Join Dr. Qi Cheng, a health scientist from CDC/NCBDDD, as she shares the 2021 Disability and Health Data System (DHDS) release. State examples on how they are using DHDS will be highlighted from Florida and Ohio. Attendees will hear a brief introduction of the DHDS database and a summary key findings in the 2019 DHDS update. Just in time to spruce up your ADA Anniversary communications with these data!

Please Note:

This webinar will be archived and available on the AUCD Webinar Library.

New CDC Funding Will Expand Knowledge about Children and Adolescents with Autism Spectrum Disorder

Little girl playing with blocks

Over the next 5 years, CDC will invest more than $16 million to carry out follow-up data collection efforts of the Study to Explore Early Development (SEED). SEED is one of the largest studies in the United States to help identify factors that may put children at risk for autism spectrum disorder (ASD) and other developmental disabilities. More than 6,000 children and their families have participated in SEED, including approximately 1,700 children with ASD. Understanding the expression of ASD from childhood through early adulthood will help inform efforts to improve the health and functioning of people with ASD as they mature, as well as to better understand the service use and needs, and the impact of ASD on families.

CDC is funding five external study sites:

  • University of Colorado Denver/ Anschutz Medical Campus
  • Johns Hopkins University
  • University of North Carolina at Chapel Hill
  • Washington University in St. Louis
  • University of Wisconsin System-Board of Regents

CDC will conduct the study as a sixth site.

New Resources

CDC COVID-19 Upcoming Partner Events & Updates

New CDC COVID-19 Low Literacy Resources Added to the COVID and Health Equity Sites – including Videos!

COVID easy read materials - thumbnail image

New CDC COVID-19 resources designed for people with literacy challenges, people with intellectual and developmental disabilities, and caregivers have posted to DHDD’s Health Equity site and CDC’s Toolkit for People with Disabilities site. Available resources include posters, social stories, and activity pages. More resources are being developed including videos.

Please continue to check back for more resources as they become available!

CDC COVID-19 ASL Videos Now Available Online 

New CDC COVID-19 American Sign Language (ASL) videos have posted to CDC’s #COVID-19 ASL playlist

asl videos screen grab

ASL Video Series: When You Can Be Around Others – YouTube

ASL Video Series: Test for Current Infection – YouTube

ASL Video Series: General Travel Precautions – YouTube

The resources above were created in partnership with the Center for Inclusive Design and Innovation at Georgia Tech, and supported by a grant from the CDC Foundation.

More information about this project and additional accessible COVID-19 resources including “Easy to Read” materials and braille can be found on the microsite hosted by Georgia Tech.

HHS Launches Hotline to Improve Access to COVID-19 Vaccines for People with Disabilities

On June 8th, the U.S. Department of Health and Human Services (HHS) announced the launch of a first-of-its-kind national hotline to connect people with disabilities to information and services to improve access to COVID-19 vaccines.

The Disability Information and Access Line (DIAL) is now available to help people with disabilities find vaccination locations in their communities, assist callers with making vaccination appointments, and connect callers to local services – such as accessible transportation – to overcome barriers to vaccination.

A man with a disability using his cellphone

The hotline also can provide information and resources to answer questions and address concerns about the vaccines and can connect callers to information and services that promote independent living and address fundamental needs, such as food, housing, and transportation.

More information: acl.gov/dial | 888-677-1199; 9:00 AM to 8:00 PM ET | DIAL@n4a.org

Read more here

President Biden Announces Child Care Initiative to Support Parents with Accessing COVID-19 Vaccinations

Child hugging her caregiver

President Biden Announces Child Care Initiative to Support Parents with Accessing COVID-19 Vaccinations

On June 2nd, President Biden announced a National Month of Action to mobilize an all-of-America sprint to get 70% of U.S. adults at least one shot by July 4th . To achieve this goal, the President also outlined various child care initiatives to support families including:

  • Four of the nation’s largest child care providers will offer free child care to all parents and caregivers getting vaccinated or recovering from vaccination from now until July 4th.
  • The U.S. Department of Health and Human Services is also issuing new guidance that encourages states to use child care funding from the American Rescue Plan to provide financial incentives to neighborhood- and home-based child care providers who join the President’s call to action and support their communities in getting vaccinated. Visit Vaccines.gov/incentives.html to learn more.

See President Biden’s remarks.

Toolkit for people with disabilities: We Can Do this Campaign

The U.S. Department of Health and Human Services (HHS) COVID-19 Public Education Campaign is a national initiative to increase public confidence in and uptake of COVID-19 vaccines while reinforcing basic prevention measures such as mask wearing and social distancing. Toolkits and resources are available in English and Spanish and for a variety of audiences.


New Study: Bullying victimization and perpetration among US children with Tourette syndrome

An upset child at school

A new study published in the Journal of Developmental and Behavioral Pediatrics used nationally representative data to understand the prevalence of Tourette syndrome, co-occurring disorders, and bullying involvement. The findings showed that 1 in 333 children was diagnosed with Tourette syndrome, and more than 80% of them had other mental, behavioral, or developmental disorders, the most common were anxiety and ADHD. More than half of children with Tourette syndrome were victims of bullying. About 20% were also perpetrators of bullying; most of these perpetrators were also victims of bullying.

Read more about the study. Learn what friends, education professionals, families, and children can do to help stop bullying.

New Study: Maternal Psychiatric Conditions, Treatment with SSRIs, and Neurodevelopmental Disorders

A new study published online in Biological Psychiatry looked at whether psychiatric conditions during pregnancy, like depression, and the use of selective serotonin reuptake inhibitors (SSRIs) were associated with autism spectrum disorder (ASD) among the children of mothers who were treated. The study found ASD was more common among children of mothers who had psychiatric conditions during pregnancy. However, among the subset of children whose mothers had psychiatric conditions, ASD was not more common among those treated with SSRIs. The authors conclude that this study provides evidence that maternal psychiatric conditions during pregnancy, but not the use of SSRIs, are associated with increased risk of ASD. These findings have implications for clinical decision-making regarding the continuation of SSRI treatment during pregnancy.

New Study: Underlying Medical Conditions Associated with Severe COVID-19 Illness Among Children

A new study published in JAMA Network Open found a higher risk of severe COVID-19 illness among children with medical complexity and certain underlying conditions, such as type 1 diabetes, cardiac and circulatory congenital anomalies, and obesity. Health care practitioners could consider the potential need for close observation and cautious clinical management of children with these conditions and COVID-19.

Health Status and Health Care Use Among Adolescents Identified With and Without Autism in Early Childhood: An Easy-Read Summary

In an earlier newsletter issue, DHDD highlighted an April MMWR looking at health status and health care use among adolescents identified with and without autism spectrum disorder (ASD) in early childhood. An easy read summary to accompany this MMWR is now available on the DHDD site. Please review and share the link with your networks!

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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