New Tool Determines Health Risks of Social Interactions for People with IDD

New Tool Determines Health Risks of Social Interactions for People with IDD


As social isolation measures continue, people who live with IDD are more likely to experience serious problems like loneliness or even abuse or neglect. A new tool from Health Risk Screening, Inc. helps weigh the benefits of social interaction vs. the risks of COVID-19 exposure for these individuals.



(Clearwater, FL) January 12, 2021—Research shows that people who live with intellectual or developmental disabilities (IDD) are up to three times more likely to die from COVID-19 and its complications when compared to people without IDD.(1) Those living with IDDs are more likely to live in group home settings and are often more reliant on support givers for help with activities of daily living. But these people, and the people who support them, have been subject to the same social distancing and isolation recommendations as the general population. Unfortunately, this disruption to the norm does more than interrupt routines and hinder personal growth and development—it also places individuals with IDD at greater risk of serious issues like abuse or neglect.(2)

Dr. Craig Escudé, President of Health Risk Screening, Inc., says, “The pandemic disproportionately affects people who live with IDD, making them more vulnerable to problems like loneliness and disruptions in services providing educational or therapeutic support. There must be a way to help decide whether it’s appropriate for people with IDD to continue on with certain social activities connecting them with others which helps reduce risks of isolation, depression and anxiety associated with limited social contact.”

Like most Americans, people with IDD are socially distancing, avoiding activities once enjoyed away from their homes. The reasons why are multifactorial:(3)

  • People living with IDD are more likely to have underlying medical conditions, such as chronic lung disease,
  • They often rely on various support givers for help with activities of daily living,
  • Standard safety precautions and preventative measures may not be understood, and
  • They may not be able to verbally communicate to others symptoms of illness.

But this massive disruption in health, home, and community services is already having profound effects on the estimated 7 million people in the United States who live with IDD.(4) Some studies show up to 70% of people living with IDD have lost at least some of their normal health services as a result of COVID-19, and as many as 74% have lost one or more services entirely. (4)

Many of these services, such as special education programs for youths with IDD, rely on interpersonal relationships between the youth support givers, who may help with physical positioning, toileting, feeding, among other needs.(5) Often, these same support givers are essential for helping prevent infection among people with IDD.(6) When these relationships are severed, people living with IDD may fall further behind academically, or they may suffer from regressive behavioral changes related to the loss of a structured daily routine.(5)

According to Dr. Escudé, support givers and family members need a tool to help weigh the benefits and risks of a person living with IDD returning to normal activities. HRS developed such a tool, called the Risk/Benefit Return to Activity Form, to help guide supporters in such decisions.

The Risk/Benefit Return to Activity Form addresses several key areas of risk, such as personal, situational, and health risks, to help determine whether the benefits of attending a certain activity outweigh the potential harm. Each section of the form includes questions such as:

  • Can the person follow the social distancing protocol of remaining 6 feet away from others independently?
  • Is the level of community spread in the location of the activity considered reasonable by health authorities?
  • Does the person have any immunocompromising conditions?

The benefits are also weighed with questions like:

  • Is socialization important to help manage or improve the person’s anxiety, mood, mental status, behavior, or mental health disorder?
  • Does the person earn a wage when participating in this activity?

Support personnel who complete this form as part of team meetings can then share it with primary decision-makers to come to a consensus as to whether or not the person with IDD should participate. The form is available to download for anyone who regularly cares for a person with IDD.

Dr. Escudé says, “Just like others, people who live with IDD enjoy social activities which enrich and enhance their lives. Our tool can help those who support people with IDD decide whether the benefits of such activities outweigh the risks of potential exposure to COVID-19.”




  1. Rabin, Roni Caryn. “Developmental Disabilities Heighten Risk of Covid Death.” The New York Times, The New York Times, 10 Nov. 2020,
  2. King, Dianne. “Risks for Harm Skyrocket for People with Disabilities during Pandemic.” The SAFE Alliance, 28 May 2020,
  3. “People with Disabilities.” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, Sept. 2020,
  4. State of the Science on COVID-19 and People with IDD. 2020,—dec-2020.pdf?sfvrsn=25893421_0.
  5. Constantino, John N., et al. “The Impact of COVID-19 on Individuals With Intellectual and Developmental Disabilities: Clinical and Scientific Priorities.” American Journal of Psychiatry, 28 Aug. 2020,
  6. “People with Intellectual and Developmental Disabilities Disproportionately Affected by COVID-19.” National Institutes of Health, U.S. Department of Health and Human Services, 28 Aug. 2020,

How to Help Loved Ones with Intellectual Disabilities with “Behaviors”

By Dr. Craig Escudé

If someone you know with intellectual disabilities has behaviors, they’re normal. Everyone has behaviors.

When I’m in pain, I might squint my eyes, grimace and curl up in a ball, or I might scream and yell out causing alarm and anxiety to those around me. If my head hurts, I can get grumpy and want to cover my head to block out light and my ears to block out sound, or maybe just move to a quiet room. The list goes on and on…

Behaviors as a Language

When we hear the term “behaviors” relating to people with intellectual and development disabilities (IDD), what is usually being referred to are adverse actions that cause some sort of harm to or disrupt the lives of the person with disabilities or others around them. What’s often missed is that these behaviors are rarely “just because someone has a disability and that’s just what they do.” With careful investigation and an understanding of the “language” of behaviors, a cause can often be found. And, even better, many of these causes do not need treatment with antipsychotic medications.

The less able we are to communicate with words, the more likely we are to communicate with gestures and actions. Have you ever found yourself using hand gestures when trying to communicate with someone from another country that doesn’t speak your language? Actions do sometimes speak louder than words. When you walk by someone and they have their head down, they’re holding their right cheek and have a grimace on their face, you may be on the right track assuming that they may be experiencing some sort of dental pain. Learning patterns of particular behaviors can often help pinpoint the cause of them.

Let’s talk about a few categories of fixable causes for adverse behaviors.


What do you do when you are hot, or cold? Do you remove your clothing? Would you “steal” someone’s blanket from them? You might ask first for the blanket, but what if you were not a person who communicates with words? What if you are in a room that’s really noisy and your head hurts? You’d likely want to move to a quieter place. But, how about if you could not move yourself or communicate to someone else what you are feeling? Might you yell and become agitated?

We should think about environmental causes of distress. Many of these can quickly be remedied and can make a difference in a person’s overall state of distress.

Sensory Issues

Some people have aversions to various sensations. One of mine is something cold touching my skin. When a person with cold hands touches me, it literally feels something like a shock that makes me recoil and even sometimes give an angry look and a gruff vocalization.

Could the feel of a particular clothing item be causing distress? Is there a repetitive sound that is exceedingly irritating to some and not to others? Could certain food textures feel repulsive to someone causing them to spit the food out? The answer to these is “yes.”

Look at what a person is experiencing in sight, sound, taste, touch, and smell when a particular challenging behavior presents itself.  It’s possible that you might identify a pattern that points to something that is easily avoidable.


There are people we like being around and people we don’t. There may not be anything particularly “wrong” with that person at all. It’s just a preference. If we have no real choice about who is around us for hours at a time, we may express our preferences through agitation, resistance, self-abusive behavior or aggression toward others.

Learned Behavior

We should also consider the possibility that a person is doing something adverse because they learned that stopping that behavior will get them something desirable. “If you quiet down, I’ll give you a soda.” What is being taught here? I get noisy, then I quiet down, I get a soda.


As a physician, this is the area that causes me the most concern. To know that there are people who are in pain and are suffering with underlying health conditions that are not being diagnosed, or worse, inaccurately diagnosed as a psychiatric condition, is disturbing.  Clinicians simply MUST learn the language of behaviors and to see them as valid presenting symptoms of illness rather than just “something that people with disabilities do.”  There are a number of behaviors that can point to specific underlying health conditions that are too numerous to share here, but I want to give you a few examples:

  • Spitting out food may be caused by pain when someone chews due to a dental abscess
  • Becoming agitated and aggressive when heading towards the dining table may be a sign that a person experiences something painful before, during, or after eating such as reflux or aspiration
  • Constantly putting their hands in their pants could be a sign of a genitourinary issue like a urinary tract infection or a yeast infection
  • Screaming or resisting taking a bath could be a sign that something ‘bad” happens when their clothes come off such as abuse
  • Waking up in the middle of the night screaming could be a sign of gastroesophageal reflux
  • Becoming withdrawn, less alert, and less interactive could be a sign of constipation
  • Being “hard to reach” could be associated with seizures
  • Scratching and hitting one’s chest along with anxiousness could be a sign of chest pain

Learn More About Easily Treatable Behaviors

I’ve seen many people in my clinical career on psychotropic medications in an attempt to reduce some of these behaviors only to find later that there was an underlying, treatable cause. Imagine if you were experiencing painful acid reflux that caused agitation, could tell no one, and were then sedated so that you would no longer “act out.” You’d still have the painful reflux, you just might be too sleepy to try to let someone know through your behavior. We can do better than this! Educating families, supporters, and clinicians in the language of behavior of people with IDD can go a long way to relieving unnecessary suffering.

Take time to learn more about behavioral manifestations of underlying medical, environmental, social, and sensory conditions. Then, share what you learn with supporters of people with IDD and clinicians who treat them. It just might make a big difference in the quality of life of someone close to you who can speak for themselves.