COVID-19 disproportionately affects developmentally disabled

As the nation’s children, teens and college students attempt to start a new school year amidst debate regarding how best to resume education during the COVID-19 pandemic, a segment of the population in desperate need of in-person supports often is overlooked in the decision-making process, according to a group of experts on the topic.

“In decision-making on the return to school for the current academic year, much of the discussion about whether and how to resume in-person education has overlooked the needs of children in special education,” said John N. Constantino, MD, co-director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine in St. Louis.

In a letter published Aug. 28 in The American Journal of Psychiatry, Constantino, writing on behalf of the directors of the nation’s 13 Eunice Kennedy Shriver Intellectual & Developmental Disabilities Research Centers, stresses that children and adults with intellectual and developmental disabilities are facing major, disproportionate burdens linked to the pandemic. The directors collaborated on the letter to raise awareness and bring focus to the problems that individuals with developmental disabilities and their families are facing.

“Although there is public awareness of some of the challenges imposed by the pandemic on individuals with disabilities, the totality of the impact on a family or a person with such disabilities can go unrecognized, even by professionals,” said Constantino, the Blanche F. Ittleson Professor of Psychiatry and Pediatrics. “Imagine, for example, a child with a developmental disability complicated by behavioral outbursts. That child may be doing well in a structured educational setting with individualized instruction but may be unmotivated by virtual learning. If that child’s school has converted exclusively to remote learning, there likely will be no trained personnel to provide individualized instruction at home.”

Such a scenario, he said, requires parents to try to focus their child’s attention on virtual educational tasks to the exclusion of their own work. When parents and caregivers are diverted by their own jobs, the child may lapse into patterns of behavior that sabotage learning and academic progress likely will lag.

“From an educational standpoint, the many individuals at risk for such consequences from online learning should be the first to return to school,” he said. “They deserve priority for resources to safely resume in-person learning.”

The letter details several priorities and considerations. Leading that list is restoration of in-person support services for those who need them to successfully learn, work, achieve independence and contribute to their communities.

In addition to educational disparities, the letter points to ways that mitigation and social distancing have aggravated the social isolation experienced by many individuals with intellectual and developmental disabilities. Constantino and his colleagues also describe the advantages and limitations of telehealth for meeting the medical and mental health needs of those with disabilities, calling attention to scenarios in which it is not possible for patients to communicate pain, distress or reliable information about their physical condition through such virtual encounters.

With co-authors from Harvard Medical School, the University of North Carolina and the Association of University Centers on Disabilities, Constantino stresses that in addition to disproportionate vulnerability to severe infection, the impact of the COVID-19 crisis on people with intellectual and developmental disabilities extends to the numerous downstream consequences that can render families isolated, underequipped and at risk for erosion in safety, quality of life and the ability to sustain or return to work.

As Congress deliberates further COVID-related legislation, Constantino and his colleagues recommend vigorous advocacy for representing the needs and interests of individuals with intellectual and developmental disabilities and their families. Such disabilities affect one in six U.S. citizens, and the group believes it is important that members of this vulnerable community not be forgotten.

“We feel, as a group, that enumerating the multitude of consequences of the pandemic on this population is key to understanding the numerous educational, occupational, clinical, social and personal effects of COVID-19 in this population,” he said. “We want clinicians, and all people, to offset the disproportionate toll of this illness on individuals and families affected by intellectual and developmental disability.”

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