by Michelle Diament | Disability Scoop | September 8, 2020Woman in wheelchair wearing a mask

Janie Desmond who has visual impairment and mild intellectual disability comes to the edge of her porch for a portrait in Durham, N.C. Desmond is one of many adults with disabilities who rely on support staff in their home to remain independent, but are worried that close interaction could increase the risk of contracting COVID-19. (Casey Toth/The News & Observer/TNS)

The life-altering effects of COVID-19 have been tougher on people with intellectual and developmental disabilities than just about anyone else and they need more support, a group of experts is warning.

letter published recently in the American Journal of Psychiatry on behalf of the directors of the nation’s 13 intellectual and developmental disabilities research centers — which are funded by the National Institutes of Health — is sounding the alarm about the devastating impact the pandemic has had on an already vulnerable population.

Many people with developmental disabilities have lost access to caregivers and service providers and these supports may not return given the financial toll of the pandemic on agencies and state budgets, the experts say.

Those with developmental disabilities are also struggling with limited access to schooling and therapies, may be unable to use technology to connect with others and may not understand what they need to do to protect themselves from the coronavirus.

“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,” writes John N. Constantino, co-director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine in St. Louis, and colleagues at Harvard Medical School, the University of North Carolina at Chapel Hill and the Association of University Centers on Disabilities.

Social distancing has been especially hard on a population that was already “disproportionately isolated,” they say. And, for a group that often needs more hands-on services at school, the switch to virtual learning is creating more inequity.

“It is an inordinate burden to attempt to recapitulate the conditions of an ‘appropriate’ education at home for most families and to avoid secondary consequences of individuals with disabilities falling further behind in academic achievement or training and suffering behavioral decompensation in the absence of the structure of a school or work day,” reads the letter.

The pandemic has also highlighted gaps in health care for people with developmental disabilities who can’t always verbalize their needs, making telehealth challenging. There have been issues with access to coronavirus testing for this population as well as ethical concerns about access to treatment for those who contract COVID-19.

With guidance emerging about how to safely care for and support people with developmental disabilities during the pandemic, the specialists said in their letter that a first priority should be restoring in-person support services to those who are unable to benefit from virtual substitutes.

Likewise, the letter recommends that in-home personnel be available to help families shoulder the burden of their children’s special education services.

“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,” Constantino said.

“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.”