Many of these vulnerable people have lost the critical support they need and can’t advocate for themselves, Dr. John Constantino, director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine in St. Louis, wrote along with a group of colleagues at other institutions.
Web-based technology often is not helpful to people with disabilities, and many can’t understand what they need to do to protect themselves from the virus.
“People with intellectual and developmental disabilities were disproportionately isolated prior to the pandemic, and the intensification of that isolation stands only to weaken the community for all citizens,” the authors wrote.
Most people with intellectual and developmental disabilities require in-person care or critical therapeutic support in their living environments, they noted. Access to those services has been temporarily lost by many during the pandemic.
Restoring this must be a first priority, but it has to be done safely; in-person staff must ensure that they protect their clients from Covid-19 infection.
While there has been emerging guidance on the safe care and support of individuals with intellectual and developmental disabilities, it’s still evolving and hasn’t reached all the places where it’s “desperately needed.” The authors also wrote that it’s not always presented in a way that can be fully understood by the people with intellectual and developmental disabilities.
Social distancing and other mitigation efforts have also likely had a disproportionate impact on those with intellectual and developmental disabilities, many of whom require physical proximity to caregivers and loved ones.
Additionally, the technologies that have allowed millions of people across the world to stay in touch have not had the same benefit for those with intellectual and developmental disabilities, who benefit from being physically close to caregivers and loved ones “to make day-to-day life fulfilling, predictable, and manageable.”
Virtual interaction, when it is accessible, is “an inadequate substitute” for many with intellectual and developmental disabilities, they wrote.
Telehealth, while it does have many potential advantages, can also leave gaps in critical aspects of health care for this segment of the population.
Solely relying on telehealth could create problems for those who cannot verbalize or adequately communicate pain, discomfort or symptoms to providers and when it comes to monitoring for things like adverse effects of medication, which is often done in person.
The letter’s authors are directors of the Intellectual and Developmental Disabilities Research Centers Network, a nationwide group funded by the National Institutes of Health’s Eunice Kennedy Shriver National Institute of Child Health and Human Development, and leaders of the Association of University Centers on Disabilities.