News and Knowledge

In this unprecedented situation that COVID-19 and the associated lockdown have brought about, autistic people and their families are disproportionately affected.

Increased Responsibilities and a Lack of Resources

As noted in an article on the Disability Scoop website, a recent report done by the National Rehabilitation Research and Training Center on Family Support at the University of Pittsburgh has found that 63 percent of caregivers had seen an increase in their responsibilities for the disabled family member. Researchers at the center surveyed 619 family caregivers and 2,933 non-caregivers, mostly in the Pittsburgh area, in April and May about how the pandemic influenced their lives.

More than half reported that caregiving has become more emotionally difficult because of COVID-19. They also reported that their health and finances are worse and that they are experiencing anxiety and depression and are worried about getting COVID-19.

Disability Scoop also reported findings from a report done by the University of Connecticut’s Collaboratory on School and Child Health looking more specifically at the experiences of caregivers of developmentally disabled children. The researchers surveyed 407 caregivers across the country in April, 225 of them caring for autistic children or children with attention deficit hyperactivity disorder and the remainder caring for neurotypical children.

The researchers found that sources of stress for the caregivers of developmentally disabled children varied, although all of them noted that their worries had increased, and they had less time to attend to self-care than before the pandemic. Those caring for developmentally disabled children also had a larger burden of caregiving and higher rates of depression and anxiety than those caring for neurotypical children. They were also more likely to report having less support for their child’s educational goals, trouble accessing child care, and loss of employment or reduced work hours as well as increased financial strain.

In the Disability Scoop article, Sandra Chafouleas, co-director of the Collaboratory on School and Child Health and one of the researchers behind the survey, said that the initial study confirms the many news reports about the increased expectations, without additional resources, faced by caregivers of disabled children. “The burden is real, and taking not only a toll on their children but caregiver well-being.”

Loss of Supports and Connection

Another Disability Scoop article reported on a letter written by directors of the nation’s 13 intellectual and developmental disabilities research centers, funded by the National Institutes of Health, and published in the American Journal of Psychiatry that described the repercussions the pandemic is having on developmentally disabled individuals and their families. “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. We want clinicians, and all people, to offset the disproportionate toll of this illness on individuals and families affected by intellectual and developmental disability,” said John N. Constantino, co-director of the Intellectual and Developmental Disabilities Research Center at Washington University School of Medicine in St. Louis and one of the letter’s writers.

Those impacts include the loss of caregivers and service providers, supports that may not return given the financial toll the pandemic has had on state and agency budgets, the experts wrote. Developmentally disabled people also have less access to school and therapies and struggle with using technology to connect with others. They also may not fully understand how to protect themselves from the pandemic and why it is critical to do so.

Most families will find it almost impossible to avoid having their developmentally disabled children fall “further behind in academic achievement or training and [suffer] behavioral decompensation in the absence of the structure of a school or work day,” reads the letter.

The specialists wrote in the letter that it is critical to make in-person support services a first priority as guidance becomes available about how to safely do that. Similarly, in-home education providers should be available to families to help with special education services.

Health Care Gaps

COVID-19 has also uncovered and made worse gaps in health care. Because many developmentally disabled people can’t tell healthcare providers what is wrong and what they need, telehealth is challenging. Access to COVID-19 testing and ethical concerns about access to treatment are also issues for this population.

The IEP

Another effect of the pandemic that weighs heavily on families with children who are autistic or otherwise disabled is the difficulty getting services required by their child’s individualized education program (IEP), as noted in a September New York Times Magazine article. In the article, Denise Stile Marshall, the chief executive of the Council of Parent Attorneys and Advocates, said that schools have not been freed from their obligations to disabled students. “You can amend the I.E.P. with mutual consent of parent and district, and you can create an addendum based on what’s feasible given the current conditions,” Marshall said, “but parents and administrators need to remember that ‘doing the best you can’ is not the legal standard.”

As the article’s author, herself the parent of a disabled child, noted, “…after all those hours of planning around conference tables in windowless rooms, we’re starting the school year with few details about how our fourth grader’s needs will be met.”

In fact, for many that is the issue: they have little to no knowledge about how to meet their needs, if they are autistic individuals, or their child’s needs, if they are parents. This lack of ability to provide what is necessary and the corresponding increase in personal responsibility can wreak havoc on individuals, parents, and families.