7 COVID-19 Vaccine Reaction Warning Signs to Look for in People With IDD

It can be difficult to recognize COVID-19 vaccine reactions in people who don’t communicate using words. Learning common signs helps protect people with intellectual and developmental disabilities who don’t verbally communicate that something’s wrong.

According to the latest information, almost 52 million Americans, or 11.5% of the total US population, have already received the COVID-19 vaccine. That’s great news for a country that’s struggled to contain the virus—but millions of people in high-risk groups still aren’t protected. People with intellectual and developmental disabilities (IDD) are three times more likely to die from COVID-19 compared with the general population because of several factors, such as a greater likelihood of living in a group home or long term care facility, higher incidences of comorbid conditions, or intolerance to wearing a mask. And even if these individuals receive the vaccine, they may be one of the small number of people who have a negative vaccine reaction.

Most people tolerate vaccination with no difficultly; if side effects do occur, they’re usually rare and include problems like mild fever, swelling at the injection site, and fatigue. But recognizing reactions to vaccination among people with IDDs can be difficult. Dr. Craig Escudé, president of Health Risk Screening, says, “Many people with IDD communicate without using words, which can make it challenging to understand how they feel and what’s going on with them. It’s important to learn what signs to watch out for so they can be treated quickly if necessary.”

It’s relatively common for individuals with IDD to use different strategies to communicate without the use of written or oral language. But this tendency makes it difficult for them to let others know when something is wrong. Family members, health care providers, and other people who support those with IDD may have difficulty recognizing common signs of discomfort or illness among people who don’t use words to communicate.

In the case of vaccine reactions, a person with IDD may show that something is wrong through their actions and attitudes toward others. These signs may include the following: 

• abnormal facial expressions, like grimacing;
• changes in attitude, including increased irritability;
• eating problems, such as refusal to eat;
• picking, scratching, or otherwise touching the injection site;
• positioning the body to protect the vaccinated arm;
• sleep disturbances such as restlessness or insomnia; and
• withdrawal from normal daily activities.

If these changes occur, it’s important to let the person’s health care team know what’s going on—that way, they can make sure there are no other medical issues affecting the person with IDD.

In an extremely small number of cases, severe, life-threatening allergic reactions occur when a person is vaccinated. A person with this type of reaction, called anaphylaxis, may have serious symptoms including the following:

• difficulty breathing;
• fast or irregular heartbeat;
• low blood pressure;
• nausea and vomiting;
• skin discoloration; and
• swelling of the throat.

If symptoms like these occur, 911 should be called or the person should be taken to an emergency department immediately. However, a trip to the hospital should only be considered for true emergencies, since individuals with IDD may be more likely to become infected with COVID-19 in large health care facilities.

“Just like the rest of us, people with IDD are at risk for reactions to the COVID-19 vaccine, but they may not communicate any problems using words. Learning to recognize the ways they may demonstrate something is wrong is key to preserving their health and well-being,” Escudé says.

A free reference document can be downloaded at https://hrstonline.com/covid-19-resources to help people know what to look for after someone they support is vaccinated.

Source: Health Risk Screening (In March 2021, Health Risk Screening will rebrand as IntellectAbility.)