Understanding COVID-19 When You Have Developmental/Intellectual Disabilities
By: Dr. Glenn Motola, PSY. D., CEO, Reimagine
Like so many parents of children with special needs, I am watching my 20-year-old daughter struggle to understand the coronavirus pandemic. I try to explain how important it is for her to take precautions against an invisible enemy she cannot hear or touch that’s attacking people and making them sick. But when she sees the conflicting and complex messages coming from politicians on the news and observes mask-less people come into the fast food restaurant she works at, she simply cannot discern what’s true. What an injustice to this population to not share information in a way that they can easily digest.
Think about that. We’ve all struggled on some level to make sense of this pandemic. Imagine what it’s like for people with cognitive challenges or learning disabilities. Misinformation and confusion, in the form of tweets, sound bites and quotes are ping ponging back and forth; creating division and even violent anti-mask confrontations in some cities. So how can you support people with developmental/intellectual disabilities (DD/ID) to help them understand what is happening and to cope with the sudden changes in their lives?
We Need a Clear Set of Guidelines and Communication
My daughter, and all people with DD/ID, need to hear the facts. They need clear, accurate and consistent information in language that is digestible. Muddling and manipulating information is particularly dangerous for those with DD/ID – many who are at greater risk of serious complications from COVID-19 due to underlying health conditions. Those among this population who live in group homes, according to a study published by the Disability and Health Journal, are four times more likely to contract the coronavirus and twice as likely to die from it.
It’s unconscionable to put these vulnerable people in harm’s way, so many who:
- Are cognitively aware but have limited mobility with little to no control over physical distance, cannot put a mask on and depend on direct support providers, caregivers and family members strictly adhering to safety protocols;
- Struggle to process information and practice preventive measures, such as frequent hand washing and social distancing – or have sensory issues that make wearing a face covering difficult; and
- Cannot communicate symptoms of discomfort or illness.
We must give this audience with different ways of processing information, who do not grasp abstract thoughts, the chance to digest COVID-19 guidelines in the clearest, most concise way. Let’s advocate for simple, consistent messages that meet them at their learning and cognitive levels. When I see that our state and local COVID-19 press briefings are signed for the deaf, I wonder where the instructions are for the others who are disabled? The Picture Exchange Communication System (PECS®) of visual communication, or Universal Design Learning (UDL), a multi-level, multi-sensory method of learning could work wonders for those who are being overlooked.
We Have to Rebuild the Village
I am at a loss…I am searching for hope, because it seems our society has no respect for these innocent and differently-abled souls. The “village” we need to keep them safe is the same we require for our elderly, those in skilled nursing homes and the kids we trust to childcare providers. We’re talking a lot about the elderly and group living…but what about the most vulnerable among us with a slew of underlying conditions?
We have to wrap our arms around each other and mend this societal breakdown ourselves. Look around, consider others and those who are dependent on our actions and empathy. Let’s summon our collective, unified sense of decency to create a consistent model of human respect and community. Let’s raise the noise level in support of families who are struggling to care for their loved ones with DD/ID. If we don’t go out of our way to protect our children and our loved ones, they will be left out.