March is Developmental Disabilities Awareness Month, a time to raise awareness about the inclusion of people with developmental disabilities in all aspects of community life, as well as awareness of the barriers that people with disabilities still sometime face in connecting to the communities in which they live.  ONC works to ensure that health IT improves the health and health care of all Americans, including vulnerable populations such as those with intellectual and developmental disabilities (IDD). Three key ONC priorities – health equity, care coordination, and information sharing – are critical to this community.

According to the Centers for Disease Control and Prevention (CDC), IDD are a group of conditions due to an impairment in physical, learning, language, or behavior areas such as:

• Autism spectrum disorders
• Cerebral palsy
• Attention-deficit/hyperactivity disorder
• Learning or intellectual disabilities
• Hearing loss
• Vision impairment
• Other developmental delays

These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.

Opportunity for Improved Care Coordination

Well-coordinated care across both health and social sectors is imperative for individuals with IDD, a complex population that experiences poorer health and has higher rates of emergency department use and hospitalization due to ambulatory care–sensitive conditions.

Individuals with IDD often see multiple clinical specialists on a regular basis, including, but not limited to, speech/language pathologists, occupational therapists, behavioral therapists, physical therapists, neurologists, nutritionists, audiologists, and cardiologists. Their health information often needs to be integrated beyond just health care settings, including group homes, private therapy practices, schools, camps, and home- and community-based services.

Health IT and Health Information Sharing

Most hospitals and clinicians in the U.S. use health IT certified by ONC’s Health IT Certification Program. New requirements for certified health IT developers were established by the ONC Cures Act Final Rule and requires the U.S. Core Data for Interoperability (USCDI), a standardized set of health data classes and constituent data elements for nationwide, interoperable health information exchange. (The deadline for certified health IT to be updated to USCDI version 1 is December 31, 2022.)

USCDI version 2, published in July 2021, added four social determinants of health (SDOH) data elements to help identify and address specific needs in domains such as food, housing, and transportation insecurity, and to coordinate care and assistance to improve health outcomes.

ONC recently published Draft USCDI version 3, which is available for public feedback until April 30, 2022. The Draft USCDI v3 proposes data elements in a new data class, health status. These data elements include disability status and mental function, which includes the more specific cognitive status, representing an important advancement for health IT that can help improve care and address inequities.

ONC’s annual Standards Version Advancement Process (SVAP) enables certified health IT developers to voluntarily adopt a newer approved version of USCDI in the ONC Health IT Certification Program and provide the update to their customers. This process provides a mechanism for health IT developers to adopt these new data elements and classes.

ONC Commitment to DEIA

ONC is dedicated to diversity, equity, inclusion, and accessibility (DEIA) efforts. Individuals with intellectual and developmental disabilities are represented across every race, gender, and age, and often need a health care advocate. While there is still much work for our nation to do in addressing the dreams, goals, health care and needs of individuals with IDD, we know that health IT can be used to help each person attain their full health potential.