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Tuesday, September 8, 2020

COVID-19 and People with Intellectual and Developmental Disabilities

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families. Those challenges get far more intense during disasters.  And coronavirus is proving to be the biggest disaster of all. Providing education and social services is proving to be very difficult

John N. Constantino et al., John N. Constantino. "The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities" (letter), American Journal of Psychiatry, August 28, 2020.

We begin with the assertion that among noninfected persons in the United States, few are more adversely affected by COVID-19 than individuals with intellectual and developmental disabilities, given that a vast proportion require in-person care or critical therapeutic support within their living environments, with little backup or systematic coverage for prolonged interruption of services.


For many, physical proximity to caregivers and loved ones is required to bridge gaps in intellectual and communication abilities and to make day-to-day life fulfilling, predictable, and manageable. People with intellectual and developmental disabilities were disproportionately isolated prior to the pandemic, and intensification of that isolation stands only to weaken the community for all citizens. 


As summer school and summer camp programs were suspended, and as classrooms are being converted to virtual learning environments for the fall of 2020, the discrepancy in delivery of a free and appropriate public education (Individuals with Disabilities Education Act, Parts A–D) is pronounced between what is available to typically developing children compared with those requiring special education.


 For all of these domains, as well as the longer-term biological, psychological, and social consequences of COVID-19 infection among individuals with intellectual and developmental disabilities, there are minimal scientific data on the degree of disproportionality of impact as a function of type of disability and socioeconomic disadvantage.


Finally, there is the Herculean task stakeholders and advocates have to ensure that public decision making and the massive mobilization of relief funds by federal, state, and local governments are equitably responsive to the needs and interests of individuals with intellectual and developmental disabilities, who require representation in all decisions that affect the population in a public health emergency of this scale. Preserving equitable attention to the voices of individuals with intellectual and developmental disabilities, in addition to the already daunting enterprise of effective self-advocacy in the heat of a national crisis, creates inordinate challenges for people with limitations in communicative capacity to be heard effectively. In this context, advocacy therefore takes on unprecedented significance, given the consequences of oversight during such rapid mobilization of funds. Between March 6 and April 24, 2020, four COVID-19 emergency supplemental funding packages became law, and each has implications for individuals with intellectual and developmental disabilities (see Table S3 in the online supplement).