The pandemic isn't over — particularly for people with disabilities

The COVID-19 pandemic has greatly disrupted everyone's lives. Clearly, its effects varied considerably for people of different races, ethnicities, and income levels. But what has been its impact on people with disabilities? As a pediatric neurodevelopmental disabilities specialist, I take care of children and teenagers with a wide range of developmental, physical, and behavioral needs, and my own sister has Down syndrome. So, I have followed the effects of the pandemic on individuals with disabilities very closely.

Ongoing harms caused by the pandemic have been especially evident for people with disabilities. Disruptions in education, employment, health care, and social services have been amplified. Parents took on full-time caregiving roles, while also stepping into new roles as special educators, speech therapists, behavior therapists, and more. This has been exhausting, frustrating, and often just not possible for many families.

Programs and social lives curtailed

Many people who have intellectual or physical disabilities require highly specialized programs and one-on-one direct support to be safe, learn, work, or perform daily living skills. Some may have more difficulty using technology, or learning and working in a virtual world. For many, their social life is solely through schools, employment, or community programming. So, the effect of limited social networks during the pandemic and extreme isolation is especially difficult.

Some people with disabilities, such as those on the autism spectrum or with intellectual disability, find it very difficult to adjust and adapt to changes required by the pandemic. Many struggle with the need to find new routines in their daily lives. Some children with disabilities regressed in their skills and behavior due to interruptions in programming and services. Symptoms of depression, anxiety, aggression, and self-injury have also increased among some children and adolescents with disabilities.

Does COVID-19 affect people with disabilities more severely?

What do we know so far about whether COVID-19 infections occur more often in people with disabilities, or whether the virus causes higher rates of severe illness or death? Several studies — including this one, this one, and this one — suggest that COVID-19 may pose a greater risk to people with intellectual and developmental disability. Further, it may do so at younger ages.

However, not all individuals with disabilities are likely to be at increased risk. Risk may hinge partly on group living, the help an individual needs, ability to take precautions, and whether a person has coexisting health conditions that make them more vulnerable if they do get COVID-19. The World Health Organization and the US Centers for Disease Control and Prevention offer guidance on ways to help people with disabilities stay healthy.

A person with intellectual disabilities or autism, for example, may have more difficulty understanding or implementing important public health information that can help them stay safe and healthy. Some people live in group settings or may depend on close physical contact from others, which increases possibilities for spreading COVID-19 infection. Additionally, some may have more difficulty adopting safety and health measures known to lower the risk of contracting COVID-19, such as wearing masks, hand washing, and physical distancing.

Has the pandemic affected access and rights for people with disabilities?

In times of crisis, weaknesses in our institutions and social systems, and marked health and economic disparities, become even more evident. During the pandemic, people with disabilities have feared that they would be denied access to ventilators and lifesaving treatments due to medical rationing. Some triage policies were driven by biased attitudes toward individuals with disabilities, or failed to explicitly protect against disability discrimination. The disability community responded to these policies with swift and strong advocacy to ensure equal, nondiscriminatory access to lifesaving care.

Early COVID relief efforts left out important considerations for people with disabilities. Many adults with disabilities are dependent on home- and community-based services that enable them to live independently, with family, or in group homes. However, early COVID relief efforts failed to provide support for these essential programs. Again, the disability community fiercely advocated. The most recent relief bill now provides additional supports for people with disabilities, such as direct stimulus payments for adult dependents with disabilities, expanded home- and community-based services, and special education support.

Strength and resilience in the response to COVID-19

The disability community is strong and resilient, and they have reached out to help one another and advocated strongly during the COVID-19 pandemic. Social stories, video models, information sheets, and webinars were quickly developed and shared to support people with disabilities, their families, service providers, and caregivers. A few examples are these resources for people with autism, Down syndrome (note: automatic download), and differing abilities.

During the pandemic, some people have thrived on increased time with families and a slower pace of life with decreased demands. Some children have been able to focus on learning daily living skills at home, such as toileting, exercise, and self-care. Technology and the use of telehealth and virtual service delivery have enabled some who could not easily access in-person services to participate, and to develop and maintain new connections and relationships.

All of us can make a positive difference in the lives of others. There are many ways to support friends, family, and neighbors with disabilities as we deal with the pandemic and its aftermath. For example, you can check in regularly to assess needs, and offer emotional support and safe opportunities for social interaction. You can share public health information in simple ways, help with food shopping and delivery of essential items, and help people with disabilities sign up for and gain access to vaccines.

We can all help decrease the spread of COVID-19 by following recommended safety precautions and getting vaccinated. These are the best strategies available to decrease the spread of COVID-19 and help protect people who are at increased risk, including those who have decreased ability to understand and adopt physical distancing, wear masks correctly, or obtain a vaccine. As the number of COVID-19 cases drops, more schools, programs, and service delivery agencies will be able to open and provide essential services for people with disabilities.