This toolkit was adapted by the Vanderbilt Kennedy Center for Research on Human Development from the toolkit created by the Developmental Disabilities Primary Care Program (DDPCP), Surrey Place.
Before the late 20th century, healthcare systems often conflated intellectual disability with psychiatric conditions, leading to widespread mistreatment of people with IDD and people with mental health conditions under a single, inappropriate framework. Because evidence-based psychological and psychiatric care did not begin to emerge until the latter half of the 20th century, behavioral differences were mismanaged through restraint, punishment, and overmedication. At the same time, legitimate mental health conditions frequently went unrecognized or untreated among people with IDD because providers attributed emotional distress or changes in behavior solely to a person’s disability—a barrier that continues today, known as diagnostic overshadowing. This history of segregation and control, compounded by diagnostic overshadowing and other barriers to equitable access to care, has contributed to ongoing disparities in mental health outcomes for people with IDD.
Based on data collected between 2021-2023,adults with IDD, identified using self- or proxy-reported functional limitations based on the Washington Group Short Set criteria, are nine times more likely to report a diagnosis of depression or anxiety compared to those without functional limitations. These disparities are linked to barriers in accessing mental health services. People with IDD are also more likely to be overprescribed or inappropriately prescribed psychotropic medications, which can have adverse effects on health.
The intersection of inadequately managed mental distress and barriers to mental health services can grow into mental health crises among people with IDD. People with IDD disproportionately encounter law enforcement both when they experience genuine mental health crises and because they may demonstrate behaviors that can be misidentified as psychiatric or criminal in nature. However, limited law enforcement training and gaps in appropriate behavioral health responses can escalate these encounters, increasing the risk of people with IDD being arrested, exposed to police force, and faced with fatal encounters with law enforcement. Altogether, these data underscore the urgent need to improve mental health services to better meet the mental health needs of individuals with IDD.
Healthcare providers and behavioral health specialists have the power to help address these gaps and prevent or de-escalate crisis situations. This toolkit adaptation by the Vanderbilt Kennedy Center includes tools for healthcare providers to assess the mental health of individuals with IDD, review the use of psychotropic medications, develop a crisis prevention and management plan to encourage safer crisis responses, and more. See below to explore some of the resources in this toolkit.
