DHDD Newsletter – June/July 2024

A Note from the DHDD Director

Dear DHDD partners,

As we commemorate the 34th anniversary of the Americans with Disabilities Act (ADA) on July 26, it is vital to reflect on the progress we have made in improving disability inclusion and accessibility, as well as the important work that remains. At DHDD, our commitment continues to support people with disabilities in achieving their optimal health and well-being through data, evidence-informed strategies, and partnerships.

Earlier this month, DHDD released its annual update to the Disability and Health Data System (DHDS) as a crucial tool to help achieve this vision. DHDS provides high-quality, timely, and actionable data to help guide decision-making at federal, state, and local levels. The data show that more than 1 in 4 U.S. adults reported having a disability in 2022. These data underscore that people with disabilities are a part of every community, including our family, our friends, and ourselves. DHDS also shows that people with disabilities are more likely to report certain health conditions, such as depression, obesity, diabetes, and heart disease. These findings highlight the importance of inclusive programs, policies, and healthcare services.

Dr. Karyl Rattay,
DHDD director

In recognition of the ADA anniversary, DHDD celebrates our commitment to disability inclusion in data systems, disease prevention and health promotion efforts. Through increased awareness and implementation of impactful interventions, including policy, systems, and environmental changes, DHDD and its partners advance health equity among people with disabilities.

Creating meaningful and lasting change requires everyone working together – including public health organizations, community partners, healthcare providers and policymakers – to achieve impact. Join us as we celebrate the ADA in promoting equitable opportunities for people with disabilities in all aspects of life. Together, we can break down barriers and help ensure everyone achieves their optimal health and well-being.

With gratitude,
Karyl

Karyl Rattay, MD, MS, FAAP
DHDD director

In the Spotlight

Disability and Health Data System: 2024 Update

NCBDDD’s Disability and Health Data System (DHDS) has been updated to include 2022 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 reported functional 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 – 2022. CDC found that more than 1 in 4 adults in the United States reported having a disability in 2022. People with disabilities are a large part of every community. For the first time, the 2022 BRFSS collected data on respondent experiences with Long COVID symptoms as well as demographic data on residence in urban or rural areas. Read more about the key findings from the latest data.

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 2022 BRFSS data. These fact sheets provide an overview of disability in each state, including the percentages and characteristics of adults with and without disabilities.

Tools and Resources

CDC Launches Web Portal on Disability Inclusion in Emergency Preparedness and Response

CDC has launched a new web portal dedicated to disability inclusion in emergency preparedness and response efforts. The COVID-19 pandemic underscored the disproportionate impact that public health emergencies can have on people with disabilities and the importance of including disability across all emergency preparedness planning activities. Addressing gaps in information on this topic is a critical step toward improving disability inclusion for communities.

CDC, in collaboration with partners and members of the disability community, developed this web portal to serve as a resource hub on all-hazards preparedness to support people with disabilities. This information can help people with disabilities consider steps they can take to plan ahead for emergencies and know what to do if an emergency happens in their communities. The web portal also includes an extensive catalog of resources that is filterable by topic area and audience, including disability organizations, first responders, and healthcare providers and clinicians.

CDC is also working to strengthen accessibility of the content presented in the web portal through resources such as videos, audio clips, and easy read summaries. Be sure to check in periodically for these additional materials as they become available!

CDC Resources Help Raise Awareness of Fragile X Syndrome

July is Fragile X Syndrome (FXS) Awareness Month. The signs and symptoms of FXS and its effects can vary. Children and adults with FXS may have problems with memory, thinking, problem solving, and planning. CDC and its partners have developed free virtual training for healthcare providers to increase understanding of the symptoms of FXS and help promote earlier identification and diagnosis.

CDC is also working with partners to collect FXS data through the FORWARD-MARCH study and is coordinating efforts with CDC’s Study to Explore Early Development (SEED) to help answer questions about how FXS, and common co-occurring conditions (such as autism spectrum disorder), impact the health and development of children and adolescents. FORWARD-MARCH will help us learn more about how to best support children and adolescents with FXS as they age while also helping individuals with FXS and their families receive the support and services they need as early as possible.

Join CDC and its partners in helping to raise awareness for FXS today!

News and Announcements

CDC’s “Learn the Signs. Act Early.” Announces Request For Applications

CDC and the American Academy of Pediatrics are recruiting Act Early Ambassador applicants from every state, territory, and tribal entity for CDC’s 2024-26 Act Early Ambassadors cohort. Please help us spread the word across early childhood and other family-serving programs, systems, and organizations in your state. Applications are due August 5^th.

More details here: 2024 Act Early Ambassador RFA (cdc.gov)

Upcoming Webinar – CEU Credits Available: Engaging Families to Support Early Childhood Development in the Health Center Exam Room and Beyond

Join CDC and the Early Childhood Developmental Health Systems: Evidence to Impact Center on Thursday, August 8, 4-5:30 PM EDT, for the webinar, Engaging Families to Support Early Childhood Development in the Health Center Exam Room and Beyond: CDC’s FREE “Learn the Signs. Act Early.” Resources Can Help.

When health centers practice family-engaged developmental monitoring, it can enhance their efforts to improve screenings, identify delays and disabilities, and encourage families to follow up when referred to services. This webinar will spotlight CDC’s “Learn the Signs. Act Early.” program and its free resources to help providers and staff engage and empower families as critical partners in developmental monitoring. Presenters include:

Katie Green, MPH, CHES, Senior Health Communication Specialist and Team Lead, “Learn the Signs. Act Early.” Program, CDC
Jill Sells, MD, FAAP, Physician and Partnerships Lead, “Learn the Signs. Act Early.” Program, CDC; Clinical Professor of Pediatrics, University of Washington School of Medicine
Toni Whitaker, MD, FAAP, Division Chief, Developmental Pediatrics, University of Tennessee Health Science Center Department of Pediatrics; Consultant and Ambassador to Tennessee, CDC’s “Learn the Signs. Act Early.” Program

Partners from the Health Resources and Services Administration (HRSA)’s Maternal and Child Health Bureau (MCHB) and Bureau of Primary Health Care (BPHC) will also join for introductory remarks.

This event is tailored for federally qualified health center providers and staff but is also beneficial for anyone who interacts with, or supports programs for, young children and their families.

Around CDC

Explore CDC’s ASL Video Playlist

CDC is pleased to share its American Sign Language (ASL) YouTube Playlist.

We encourage you to share these helpful videos with your networks, including people who use ASL, their family and friends, and organizations connected with the deaf and hard of hearing community. The playlist includes ASL videos on a variety of health topics and initiatives, such as:

Vital Signs–health equity, colorectal cancer, breast cancer screening, obesity, alcohol and tobacco use, HIV testing, and more
Tips From Former Smokers® campaign–stories from real people about their smoking-related issues
Hear Her campaign–raising awareness of maternal warning signs during pregnancy
Check-In with Dr. Cohen–respiratory and infectious diseases
Chicken Coops–safe handling of backyard poultry
FEMA-CDC videos–safety tips during and after a disaster

Partner News and Announcements

Including People With Disabilities: A Training Series For Tobacco Control and Cancer Prevention Professionals

The National Association of Chronic Disease Directors’ Disability Inclusion Network partners with the Lakeshore Foundation to offer Including People With Disabilities: A Training Series For Tobacco Control and Cancer Prevention Professionals.

The first webinar in the Including People With Disabilities series will be an introductory training held on July 23, 2024 at 2:00pm Eastern Time. The training will provide fundamental concepts and strategies for including people with disabilities throughout tobacco control and cancer prevention work.

By the end of this webinar, participants will be able to:

Understand the health disparities people with disabilities experience related to tobacco use and cancer prevalence.
Recognize the different models of disability.
Describe what it means to be inclusive.
Comprehend the disability inclusion domains and strategies.
Identify inclusion strategies for tobacco control and cancer prevention.
Think about sustainability efforts.

The Disability Inclusion Network for Tobacco Control and Cancer Prevention is supported by funding from CDC’s Office on Smoking and Health and Division of Cancer Prevention and Control.

To register: https://chronicdisease.zoom.us/webinar/register/WN_84VfhdJBR8WDNZZfJDZFMw

Monthly Arthritis Program Sharing and Networking Webinars

The National Association of Chronic Disease Directors is hosting a webinar on Tuesday, August 6 focused on advancing state-level partnerships to expand the reach of arthritis appropriate evidence-based interventions to people with disabilities. Register here.

Continuing Education Opportunity: Healthcare Access for People with Disabilities

The Ohio State University Nisonger Center, one of CDC’s funded Disability and Health State Programs, has developed a new web-based training offering continuing education credit for healthcare providers. This training addresses a practice gap in health professionals’ knowledge, skills, and ability to meet the health needs of patients with disabilities. To learn more or to take the training, please visit the CDC TRAIN training platform.

ASTHO Medicaid Analysis Project Assesses COVID-19’s Impact on Adults with Intellectual and Developmental Disabilities

An analysis of data from Louisiana and Pennsylvania reveals the impact of COVID-19 on inpatient admissions and chronic conditions among Medicaid enrollees with intellectual and developmental disabilities. A new report from the Association of State and Territorial Health Officials (ASTHO), funded by CDC and in collaboration with Guidehouse, details key observations and outcomes from the analysis.

Fostering Inclusivity in the Walk With Ease Program

The National Arthritis Foundation’s Walk With Ease® (WWE) program now offers a Disability Adaptation Guide to educate program providers on tips and strategies to include people with disabilities in their program. The guide serves as a blueprint for fostering inclusivity within the WWE program. CDC-funded partner, the National Center on Health, Physical Activity and Disability, provided support to the development of the guide.

The Positive Impact of the MENTOR Program

The National Center on Health, Physical Activity and Disability’s (NCHPAD) CDC-funded MENTOR program, which stands for Mindfulness, Exercise and Nutrition to Optimize Recovery, takes a holistic approach to restoring, improving, and protecting health. MENTOR focuses on individuals who have acquired a new disability (spinal cord injury, stroke, traumatic brain injury), diagnosis (multiple sclerosis, Parkinson’s disease) or have a congenital condition (cerebral palsy, spina bifida). Through this program, individuals learn the multiple ways life can be enhanced through the portal of health and wellness.

Researchers evaluated the MENTOR program and reported improvements in multiple areas of wellness including physical, mental, and emotional/spiritual health and noted small improvements in mindfulness and resilience.

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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.