TALKING ABOUT COVID-19: 6 TIPS FOR PARENTS, FAMILY MEMBERS, AND CAREGIVERS

BY KAREN REMLEY, MD, MBA, MPH, FAAP

People with intellectual and developmental disabilities (IDD) face unique challenges and are more likely to get very sick from COVID19. Throughout the COVID-19 pandemic, parents, family members, and caregivers have been working hard to help the people they care for stay healthy and safe during this difficult time.

Over the past few months, the Centers for Disease Control and Prevention (CDC) has asked caregivers to share what they have found helpful when talking with their loved ones with IDD about getting a COVID-19 vaccine, getting tested, washing hands, practicing physical distancing, and wearing a mask..

CDC hosted a series of discussions with adults with IDD and their caregivers, most of whom were family members. The findings from those discussions helped inform the development of a new suite of CDC materials, including videos, posters, stories, and activities. The aim of these materials is to help caregivers talk with their loved ones with IDD about what to expect when getting a COVID-19 vaccine or test and how to stay safe if they are not fully vaccinated. •

ABOUT THE AUTHOR:

Karen Remley, MD, MBA, MPH, FAAP, is the Director of CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD). She has more than 30 years of experience in public health and health care, with leadership roles in the public and private sectors. Her "north star" has always been children and families, and she has shaped her career around helping every family have the best opportunity for health and well-being. Dr. Remley earned an MBA from the Fuqua School of Business at Duke University, an MPH at the University of Massachusetts Amherst, and her MD from University of Missouri in Kansas City. She completed her pediatrics residency at St. Louis Children's Hospital-Washington University School of Medicine in St. Louis. Dr. Remley thanks CDC's COVID 19 Task Force for their contributions to this article.

LET'S TALK : TOOLS TO START THE CONVERSATION

CDC

COVID-19 materials for people with IDD and their caregivers cdc.gov/ncbddd/humandevelopment/COVID-19-Materials-for-People-with-IDD.html

Additional COVID-19 information for people with disabilities cdc.gov/coronavirus/2019-ncov/need-extra-precautions/people-with-disabilities.html

CONVERSATION STARTER : SIX TIPS FOR PARENTS, FAMILY MEMBERS, AND CAREGIVERS

Below are tips and resources to help parents, family members, and caregivers make tough conversations about COVID-19 a little easier.

TIP 1: MODEL AND EXPLAIN WHAT YOU'RE DOING TO STAY SAFE

When you do things like wearing a mask if you are not fully vaccinated or washing your hands, try pointing out and talking about what you're doing and why you're doing it. For example, as you put on your mask, say, "I'm putting my mask on because I'm not fully vaccinated yet and I'm about to be around other people." You can also watch CDC's COVID-19 videos for people with IDD together to see specific ways to stay safe — like wearing a mask — and apply these to your daily routine. "Sometimes, I think as caregivers, we get so used to, 'Come on, let's go!' and you do something automatically like put on the mask, but you forget to tell them, 'Okay, this is why we are putting that on' and actually modeling what you're doing. I think that's a good reminder."

TIP 2: SHOW EMPATHY BY ACKNOWLEDGING HARD THINGS

Some ways to prevent COVID-19, like getting the vaccine or wearing a mask, can be hard for people with sensory challenges. Show that you understand what they are going through. Then, remind them that everyone needs to take actions to stay safe from COVID-19. When possible, see if there are small changes that could make these actions easier. For example, try out a few different styles and fabrics of masks. "We've had to model how to wear masks to keep safe, acknowledging how it might hamper your breathing a little bit or make you feel uncomfortable or make you hot, but explaining why we had to. And acknowledging his routine, which is totally broken from what we would normally do. Once he had his shot, he was kind of nervous before having it, and we just let him know it was going to be okay."

TIP 3: GIVE REMINDERS TO STAY SAFE WHEN LEAVING HOME

If you or your family member are not yet fully vaccinated against COVID-19, remind them to stay physically distanced from others as you're getting ready to leave home. Be sure to use the same words every time. For example, you could say, "When we go out, keep a safe distance between yourself and other people." CDC's COVID-19 posters for people with IDD can help the person you care for remember to practice safe habits. Post them in the kitchen, living room, or other places where you spend time together. You can also share them in schools, workplaces, and other group settings. "Praise him when he's doing something right, like 'Oh, I like how you're wearing your mask, you're keeping me safe and you're keeping you safe!' or 'I like how you're washing your hands and you're doing such a good job. That keeps us from getting sick.' So just a lot of reinforcement helps. Posters can also help reinforce what we're trying to teach at home. Just showing it's not just us, that other people have to do it too."

TIP 4: IDENTIFY AND ACKNOWLEDGE CHANGES IN ROUTINE

When COVID-19 interrupts your plans or routines, clearly acknowledge what is changing and explain why. For example: "We can't go to visit Uncle Marcus at his home right now. I know you miss hanging out with him, but it's not safe because Uncle Marcus is not fully vaccinated against COVID-19 yet." If possible, suggest a safer alternative like a video call. "When we were supposed to go on Thanksgiving vacation, we had to let him know ahead of time that we wouldn't be going because he's in a routine and he knew what we were doing, so we had to explain that. A lot of the things that he used to do, like Special Olympics, we had to explain why we can't. We really had to talk a lot about why you can't today or why you have to wait so many days, just a reassurance every day that you will get back there."

TIP 5: EXPLAIN WHAT TO EXPECT AHEAD OF TIME

When you are getting ready to go to a new place, explain what to expect and point out anything that might be different than usual because of COVID-19. For example, as you are getting ready for a doctor's appointment, you could mention that everyone will be wearing a mask, including the doctor. CDC's social stories and interactive activities for people with IDD can be a great way to prepare for new situations like these. You can read the social stories together to reinforce habits and learn what to expect in new situations, like getting a COVID-19 vaccine or test. Some materials are in "fill-in-the-blank" or "cut-out" formats to help personalize the stories and make them easy to review together. "As things have eased up, if I'm a caregiver, Special Olympic bowling started a week ago, and there are certain expectations that they still have to wear masks and they are still supposed to distance. We talked about that, two weeks in a row. So, I think that's really important too–explaining what's going to happen when we get there."

TIP 6: EASE THEIR WORRIES 

It's normal to feel scared or anxious about COVID-19 — especially when so much is out of our control. If the person you care for is feeling worried, remind them that there are things they can do to stay safe. The most important thing is getting the COVID-19 vaccine, and until they are fully vaccinated, they can protect themselves and others by wearing a mask, keeping a safe distance from others, and washing their hands. "I explained to her that it's important that you get the shot so that you can do things other than staying in the house and this will help you and keep you from getting sick. She wants to go back to her day program, and I told her that getting the vaccination will help her get back to her day program quicker. I took her with me when I got my shot. She watched me get mine and she saw that there was no fear involved."