NIH-funded researchers call for restoration of support services or alternatives
The COVID-19 pandemic has taken a disproportionate toll on people with intellectual and developmental disabilities (IDDs), write the directors of the Intellectual and Developmental Disabilities Research Centers (IDDRC) Network, a nationwide group funded by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. The article was written by John Constantino, M.D., director of the IDDRC at Washington University School of Medicine in St. Louis, along with fellow IDDRC directors and leaders of the Association of University Centers on Disabilities. It appears in the American Journal of Psychiatry.
A large number of people with IDD who require in-person care have lost the support of trained caregivers and community service providers due to the pandemic. The authors note that the Centers for Disease Control and Prevention and others have issued guidelines for group homes, schools, and others entrusted with the care of people with IDD. It is vital to ensure that when they return to work, care staff exercise techniques and procedures to protect their clients from infection, the authors write. Moreover, people with IDD depend on caregivers and loved ones to help them bridge gaps in intellectual and communication abilities. In the absence of this human contact, the authors call for virtual care and support, where viable. Those who cannot benefit from screen-based supports should be prioritized to receive in-person services.
Suspension of classroom time also disproportionately affects children with IDD, who often require special educational services, increased teacher-student ratios, and specialized interventions, many of which need to be administered in person, the authors note. It is difficult for families to take on these tasks, and qualified in-home surrogates should be mobilized whenever possible to meet this need and to support parents’ efforts.
Also, people with IDD often cannot verbalize their symptoms during telemedicine appointments, and physicians need to use their best judgement in providing in-person care for them when necessary, according to the authors. The article emphasizes that people with IDD who are infected with COVID-19 should receive equal access to testing and appropriate medical care.
Melissa Parisi, M.D., chief of the NICHD Intellectual and Developmental Disabilities Branch, is available for comment.
Constantino, et al. The impact of COVID-19 on individuals with intellectual and developmental disabilities: clinical and scientific priorities. The American Journal of Psychiatry. 2020.
About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): NICHD leads research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. For more information, visit https://www.nichd.nih.gov.
About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit https://www.nih.gov.