DHDD Newsletter – July 2022

A Note from the Acting DHDD Director

Dear DHDD Partners,

July has been an exciting month, as we honored an important observance that supports the inclusion of all individuals in our society. On July 26^th, we celebrated the 32^nd anniversary of the Americans with Disabilities Act (ADA), a civil rights law that prohibits disability-based discrimination and helps ensure people with disabilities have equal opportunity to pursue their goals.

DHDD strives to ensure that people with disabilities are provided the same public health programs, healthcare services, and access to health information as people without disabilities. In honor of the ADA Anniversary, we have developed several materials recognizing this important event. Please take a moment to watch the CDC Director Debrief video and read this story about our work in addressing COVID-19 among people with disabilities.

Thank you to the advocates, allies, and change makers who contributed to the ADA – and to our partners for all you do in enhancing the lives of people with disabilities. We are with you and committed to our vision of helping all individuals thrive and participate in their communities.

Best,
Blythe

In the Spotlight

Fragile X Syndrome: Learning what families need, one person at a time

Fragile X syndrome (FXS) is a rare genetic disorder that has a major effect on a person’s life. It is the most common cause of inherited intellectual disability. During the past several decades, scientists have made advancements in understanding the genetics of FXS; however, to help people with FXS and their families, we need to learn more about the effects of FXS on their day-to-day lives, other conditions that commonly occur with FXS, and the types of interventions and supports that are most effective.

Since FXS is a rare disorder, researchers who want to learn more may have difficulty finding enough affected individuals to get answers to scientific questions. CDC supported the National Fragile X Foundation with developing the Fragile X Online Registry With Accessible Research Database (FORWARD) to better answer these questions.

FORWARD is now a large source of clinical and demographic information on people with FXS in the United States. This information can be used to better address the many unanswered questions about FXS. FORWARD data can be used to inform the development of interventions that improve the health and quality of life of people with FXS and their families and caregivers.

FORWARD has gathered data from over 1,800 individuals with FXS. A new phase of the FORWARD study, called FORWARD-MARCH (Multiple Assessment for Research Characterization) starts in the fall of 2022.

Click here to read more about FORWARD and what CDC and partners are doing to learn more about FXS, one person at a time.

New Resources

NEW: COVID-19 Cases and Hospitalizations Among Medicare Beneficiaries With and Without Disabilities: Easy to Read Summary

Adults with an intellectual or developmental disability (IDD) are more likely to get COVID-19 and get seriously ill. People with IDD are 3 times more likely to die from health problems related to COVID-19. DHDD created an plain language version of the recently released MMWR on COVID-19 Cases and Hospitalizations Among Medicare Beneficiaries With and Without Disabilities — United States, January 1, 2020–November 20, 2021. This easy-to-read summary highlights some of the key findings from this study in a way that can be easily digestible for the general public. You can view the easy-to-read summary here. Please share with your networks!

NCBDDD Strategic Plan now available online

NCBDDD’s new Strategic Plan is officially here! Center staff worked diligently over the last few months to develop a plan that will guide NCBDDD’s work through 2026 and demonstrates our commitment to the health and well-being of babies, children, and adults. The plan is also written in a flexible and adaptable manner to accommodate future public health responses.

The plan includes goals for 4 focus areas

Lead organizational change by championing diversity, equity, inclusion, and accessibility
Modernize data and laboratory systems for action
Enhance partnerships, training, communication, and health promotion activities
Improve understanding and identification of health inequities for people we serve

Now Available: Free At-home COVID-19 Tests for People Who Are Blind or Have Low Vision

The Biden-Harris Administration has launched a new initiative to expand the availability of at-home tests that are more accessible for people who are blind or have low vision. The tests work with a Bluetooth-enabled smartphone and free app to provide users with audible instructions, and audible test results. Read more about the tests.

How to get the tests:
Order online or by calling 1-800-232-0233.

Each order will include two rapid-antigen tests that are more accessible for people who are blind or have low vision.
Orders will ship free, while supplies last.

Because supplies are limited, please order the more accessible tests only if you do not have options for using the standard tests. If you have someone you trust who can help you administer the test and interpret results (in person, or through a video platform like FaceTime or Zoom), or can use assistive technology (such as AIRA or Be My Eyes), please order the standard tests.

Need more assistance?
The trained staff at the Disability Information and Access Line (DIAL) can provide additional assistance with:

Ordering tests.
Understanding instructions for test administration and test results.
Providing alternative instructions for traditional at-home tests for people who are unable to access, read, or understand the manufacturer’s version.
For those who cannot use an at-home test, DIAL operators can:
- Assist with ordering “swab and send” kits to collect a sample and mail it back for results.
- Connect callers to local organizations for assistance locating other testing options in their community, including in-home testing programs or transportation or companion support to visit a community-based testing site.

Call 888-677-1199 Monday-Friday from 9 a.m. to 8 p.m. (Eastern) or email DIAL@usaginganddisability.org.

Funding Opportunities

Additional Free At-Home Rapid COVID-19 Tests Available

CDC’s Autism and Developmental Disabilities (ADDM) Network – Funding Opportunity

CDC’s Child Development and Disabilities Branch within the National Center on Birth Defects and Developmental Disabilities announced a Notice of Funding Opportunity (NOFO) ] on May 19, 2022, on Grants.gov. Applications are DUE September 9, 2022. This NOFO will fund recipient organizations to participate in the Autism and Developmental Disabilities Monitoring (ADDM) Network, a population-based, multiple source records-based surveillance system for autism spectrum disorder (ASD). Please direct any questions regarding the application process to Anita Washington at addm@cdc.gov

Funding Opportunity Announcement: Improving Access to Technology-based Interventions for ADHD and Tic Disorders

A funding opportunity announcement for Small Business Innovation Research (SBIR) on “Improving Access to Technology-based Interventions for ADHD and Tic Disorders” has published. The goal of this project is to develop technology-based solutions for improving access to evidence-based treatments for ADHD and tic disorders, including Tourette syndrome. The solutions are meant to supplement and expand the informational and skills-building components that are part of evidence-based behavioral treatment. More information about this announcement can be found on page 166 here: HHS Program Descriptions (nih.gov).

Act Early Ambassador Program

The Centers for Disease Control and Prevention’s (CDC) National Center on Birth Defects and Developmental Disabilities and the Association of University Centers on Disabilities (AUCD) announce a funding opportunity for Act Early Ambassadors to work with CDC’s “Learn the Signs. Act Early.” (LTSAE) program to improve early identification of developmental delays and disabilities, including autism, by:

promoting the adoption and sustained integration of family-engaged developmental monitoring using LTSAE milestone checklist resources in programs/systems that serve young children and their families (e.g. WIC, home visiting, child welfare, early care and education, etc.);
serving as a state or territorial representative of CDC’s national LTSAE program; and
supporting the work of Act Early Teams and other state/territorial or national initiatives to improve early identification of developmental delay and disability.

Application Deadline: July 29, 2022 at 5:00pm ET
Questions/More Information
AUCD Contact: Jordan Kerr, BSPH | jkerr@aucd.org
CDC/NCBDDD Contact: Karnesha Slaughter, MPH | KSlaughter2@cdc.gov
Funding Opportunity Announcement

Publications

“A Systematic Review and Meta-analysis of Parental Depression, Antidepressant Usage, Antisocial Personality Disorder, and Stress and Anxiety as Risk Factors for Attention-Deficit/Hyperactivity Disorder (ADHD) in Children”

The new study recently published in Prevention Science looked at the strength of the associations between parental mental health and child ADHD through a set of meta-analyses to examine the association of parent mental health indicators (e.g., parental depression, antidepressant usage, antisocial personality disorder, and stress and anxiety) with subsequent ADHD outcomes in children. Link: https://link.springer.com/article/10.1007/s11121-022-01383-3

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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.