A gloved hand holds a vial of clear liquid.

The Forgotten: Adults with Developmental Disabilities During COVID-19

“It’s time to put on hand sanitizer, Beth*,” I say as we get back in the car after visiting the park to see the ducks, or as she calls them, “QUACK QUACKS.” I reach for her hand and when the sanitizer touches her skin, she recoils.

“Don’t you try! Don’t you try!” Beth exclaims, pulling her hand back. I put some hand sanitizer on my own hands and mime how to rub it in, and after much encouragement, she begrudgingly rubs her hands together.

I am a Direct Support Professional for Inner Potentials LLC in Eugene, Oregon, working with adults with developmental disabilities. We teach independent living skills in the community. The last time I worked with Beth, an elderly woman with an intellectual disability, COVID-19 was just beginning to appear in Oregon. Beth lives in a group foster home and, like her roommates, she doesn’t know what the virus is or how to protect against it. Many do not understand that adults with developmental disabilities are the most at-risk population to die from COVID-19.

While the media focuses mainly on retirement homes because they are larger and have higher case rates, people have ignored how the virus inequitably affects those with developmental disabilities. According to FAIR Health, people with developmental disabilities[1] across age groups “had the highest odds of dying from COVID-19.” In New York State, residential group homes for adults with developmental disabilities reported a higher case rate of 7,841 per 100,000 people compared to the general population case rate of 1,910 per 100,000 people. In addition, the mortality rate was also much higher than the general population, with nearly 1,000 more people dying per 100,000. They link this high number to group living and the underlying health conditions that many people with developmental disabilities have. As of the 2010 United States Census, over six million Americans have developmental disabilities. This is a significant population in the country that is often forgotten and unreported in the media regardless of their current health crisis.

Being in lockdown, adults with developmental disabilities have a higher risk of mental distress from being isolated from friends and family, without the ability to understand what is happening. Routines are incredibly important for people with developmental disabilities because they provide stability, comfort, and behavioral management. Group activities, like music shows, movie nights, and game tournaments, along with family visits, gave them a sense of normalcy and expectation. The virus has made these routines impossible. I was a part of Beth’s routine. On our last day, with new restrictions, we went from park to park, trying to keep her entertained — and safe. Seeing other people entering the open stores confused Beth as she yelled, “That one’s open, that one’s open!” Even though it pained me to keep explaining to her it was unsafe, I knew both her vulnerability to the virus and the consequences if I failed to keep her safe.

With new vaccines for the coronavirus being distributed across the country, my clients, and other people with developmental disabilities, still have not received the vaccine. People with developmental disabilities are struggling living in this pandemic, and are at a greater need for life to go back to “normal.” In the meantime, many in-home providers do amazing jobs helping their clients learn and understand the virus. Creating handwashing games and making in-person visits virtual are just a few ways group home staff have gotten creative in supporting not only their clients’ physical health but their mental health as well. But this is not enough. They still cannot touch their loved ones, they cannot receive their normal services, and adults with developmental disabilities, especially those living in group homes, are most at-risk for both physical and mental consequences from the coronavirus. All people with developmental disabilities need the vaccine now.

People with developmental disabilities are, historically, more at risk for sickness during pandemics and emergency situations. During the Spanish flu pandemic in 1918, there was a disproportionate risk for adults with developmental disabilities compared to the general population. There is not much data on this topic because people with disabilities are rarely noted in history, but in Norway’s institutions, people with developmental disabilities had a higher mortality rate than the employees, as 9.8 percent of patients died compared to 1.1 percent of employees. In addition, the National Center for Biotechnology Information (NCBI) emphasizes the importance of disaster and pandemic preparedness for all people with disabilities because of the evidence from Hurricane Katrina, where many people with disabilities were not prepared to be evacuated and died. Government policy for disaster preparation focuses on able-bodied people’s needs and does not focus on the needs of people with disabilities. Because of this, the NCBI ties lack of preparedness to the many poor outcomes people with disabilities suffer during emergencies — like pandemics.

In preparing for the new vaccine to be distributed, the states have the power to determine the schedule and eligibility for at-risk groups. In Oregon, people with developmental disabilities are in Phase 1a, so they are one of the first groups in the state to have access to vaccines with healthcare workers. In other states, they are in Phase 2, or vaguely mentioned at all. People with developmental disabilities are at risk for the virus, and at risk for being overlooked. Vague language like “people with severe risk of illness or death” is dangerous because it is up to the individual to decide what it means. People with disabilities, even under the Americans with Disabilities Act (ADA), suffer from a lack of access to quality healthcare. It has been proven they are the most at-risk population for severe and fatal outcomes from the coronavirus. However, being a minority, discrimination threatens their access to the vaccine to be able to reinstate their routines, connect with loved ones, and receive necessary services. Some states, like my home state of Oregon, are recognizing the risk people with developmental disabilities experience, but others are doing the opposite. Now is the time to give people with developmental disabilities the attention and access to the medical care they need because of their historical risk of illness.

I hope, with the vaccine, I will be able to work with Beth in 2021. I have not seen her since March, and I worry for her often. Every morning when I arrived, she always excitedly babbled at me waiting for me to pick her up. She left her house only with me and my coworkers at Inner Potentials. There is only so much her in-home care providers can do — they cannot take her outside. We do not hear about people like Beth in the media. They are hidden from the public as they continue to lose their skills and die from COVID-19 without the attention and medical care they deserve.

Notes

    1. People with autism were excluded from this category of risk, according to FAIR Health. *Names have been changed for privacy.

About the Author

One Comment

janetlynnegolden

Great article. I will tweet to WH Office of Disability Policy and you should too, because there needs to be federal leadership to address this problem
Dr. Kim Knackstedt
@kiknack
Disability policy, equestrian, Gonzaga & KU graduate, PhD, Oregonian & Washingtonian. All tweets are my own. RT≠Endorsement.

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