Intellectual and/or Developmental Disabilities
As part of the 2019 legislation that reauthorized PCORI’s funding for 10 years, Congress included research on intellectual and developmental disabilities as a priority topic for PCORI.
More about Intellectual and/or Developmental Disabilities (IDD)
Developmental disabilities are chronic and begin either at birth or during the developmental period, and they cause physical, learning, language, and/or behavioral impairments. Intellectual disabilities, a type of developmental disability, involve limitations to cognitive function—such as learning, reasoning, and problem solving—and adaptive behavior. Not all developmental disabilities include limitations in cognitive ability. There are approximately 7 to 8 million people in the United States with IDD, representing about 3 percent of the population, according to federal data.
Individuals with IDD often have special healthcare needs. This issue is particularly critical for adolescents with IDD as they transition from pediatric to adult-oriented healthcare settings with fewer support systems, including care planning and coordination. In addition, as with so many health conditions, people of color with IDD are subject to even greater health disparities compared to their peers from other groups.
Recently Funded Research Studies
In July 2021, PCORI's Board of Governors approved two awards totaling $12 million to support studies assessing ways to deliver mental health care to young people with intellectual and developmental disabilities (IDD), who have higher rates of need and use of emergency care. One study will compare in-person delivery of a national model of crisis prevention and intervention services for people with IDD to a version of this model using telehealth to provide the services. The other study will assess whether a care coordination program that includes a tailored behavioral health treatment component achieves better outcomes than a care coordination program that connects teens to community resources.
On October 21, 2021, PCORI is hosting a workshop, during which a panel of clinical and research professionals will discuss the topics of intellectual and developmental disabilities and co-occurring mental health conditions. Meanwhile, on November 10, 2021, PCORI is hosting a stakeholder webinar on diagnosis and treatment for attention deficit hyperactivity disorder in children and adolescents.