DHDD Newsletter – July 2020

A Note from the DHDD Director:

Dear colleagues –

I hope you are all doing well. I was recently deployed to assist the White Mountain Apache Tribe in Arizona where I supported testing, assisted with reviewing and writing guidance, performed needs assessments in select communities and strategized how the tribe can support their most vulnerable tribal members. There is much to be done, and I am grateful to have the opportunity to be a part.

This month, CDC and DHDD have celebrated the 30th Anniversary of the Americans with Disabilities Act (ADA) and in the newsletter, you’ll see some of the resources we have developed in recognition of this important event. We are grateful to you, our partners, for all the work you do to ensure that the goals of the ADA become a reality for so many people with disabilities.

Take care and stay well,
Georgina Peacock

In the Spotlight

30^th Anniversary of the Americans with Disabilities Act

July 26^th marks the 30^th anniversary of the Americans with Disabilities Act (ADA). The ADA is a civil rights law that prohibits discrimination against people with disabilities across many aspects of society such as employment, education, transportation, and housing. In recognition of this important milestone, please view CDC’s commemorative message from Dr. Redfield along with a video montage, a CDC Feature in both English and Spanish, social media posts and a podcast.

Also, CDC Healthy Schools released a new research brief on inclusion in physical education and physical activity that defines inclusion, identifies relevant federal policies, describes the current status of inclusion in US schools and school districts, and suggests 6 actions state leaders can take to promote inclusion.

CDC continues to strive toward achieving the intent of the ADA as a critical piece of civil rights legislation to ensure people with disabilities receive essential healthcare services and programs, enjoy a high quality of life, experience independence in their communities, and reach their full potential.

CDC recently awarded new funding to 38 states and 1 territory to advance efforts to identify all infants with hearing loss early by optimizing each jurisdiction’s current EHDI Information Systems and expanding their ability to report, analyze, and use patient-level data. DHDD is excited about this innovative four-year award called “Improving Timely Documentation, Reporting, and Analysis of Diagnostic and Intervention Data through Optimization of EHDI Surveillance Practices and Information Systems.”

ASL videos – Learn the Signs, Act Early

DHDD’s Learn the Signs. Act Early. program developed a video that provides information in American Sign Language (ASL) on what to do if you have concerns about your child’s development. Learn the Signs. Act Early. reminds parents to speak with their child’s doctor, share their concerns and ask about developmental screening and services that may help. It’s important not to wait. Acting early can make a real difference! Please share this link widely!

See the video

Fragile X Syndrome: Learning What Families Need, One Person at a Time

July 22 is
Fragile X Awareness Day

On July 22^nd , Fragile X syndrome (FXS) awareness day, CDC joined other researchers in presenting new research findings from the Fragile X Online Registry With Accessible Research Database (FORWARD) in the National Fragile X Foundation’s Research Roundup.

FORWARD is a large source of clinical and demographic information on people with Fragile X syndrome in the United States. FORWARD data can be used to

better understand the many unanswered questions about FXS, and
develop and deliver interventions that improve the health and quality of life of people with FXS, their families, and their caregivers.

Read about what CDC and partners are doing to learn more about FXS, one person at a time

SEED Forecast Announcement (CDC-RFA-DD-21-001)

On September 3, 2020, CDC will publish a new Notice of Funding Opportunity (NOFO), CDC-RFA-DD-21-001, Study to Explore Early Development (SEED) Follow-up Studies. CDC plans to fund up to 6 recipients to participate in epidemiological follow-up studies of children previously enrolled in SEED. This project will add knowledge about autism spectrum disorder (ASD), including risk factors for ASD and the expression of ASD, from childhood through early adulthood, and information that can be used to improve the health and functioning of individuals with ASD as they mature.

The application period opens September 3, 2020 and closes November 10, 2020.

Find additional information on the SEED funding opportunity.

Publications

A Qualitative Evaluation of Parenting to Support Early Development among Spanish-speaking Legacy for Children™ Participants

Researchers from DHDD’s Child Development and Disability Branch along with colleagues at Oklahoma University Health Sciences Center and Oklahoma State University published a study in the Journal of Child and Family Studies looking at how Legacy for Children^TM – a group-based parenting intervention that has been culturally adapted for Spanish-speaking mothers (Legacy Spanish) – informed parenting knowledge and practices related to early development.

To explore their experiences with Legacy Spanish, researchers conducted focus groups with 14 Legacy Spanish participants (Spanish-speaking Latina mothers from low-income households with children aged 21–31 months).

These mothers

described gaining new knowledge about parenting and child development from Legacy Spanish and
attributed positive changes in their parenting and self-efficacy to the program.

Findings from this study demonstrate that a culturally adapted parenting intervention has the potential to support nurturing parent-child relationships among low-income Spanish-speaking Latino families.

Read a summary of the article.

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