COVID-19 has changed all of our lives in so many ways. We are still uncertain of the long term effects of the pandemic, both on societal norms and our physical and mental health. There has been a strong focus, and rightly so, on mental health during the pandemic. The fear and anxiety about exposure, isolation and change in routines have affected so many of us. But imagine if you had little control over your isolation or were not able to fully understand why you can’t continue with your normal daily routines.
While largely forgotten, there are a significant number of individuals in our community who have an intellectual and/or developmental disability (IDD) living on their own, with a caregiver or in a group home or institution. People with IDD were disproportionately isolated before COVID-19, and that isolation has only intensified during the pandemic. They also are especially vulnerable to the physical, mental and social effects of the pandemic and are at a greater risk of infection due to physical health problems, social circumstances and limitations in understanding.
Routine and predictability are important to people with IDD, and disruptions to usual activities can lead to additional mental and physical stress and even disruptive behaviors. For school aged people with IDD, there are questions about whether or not an equitable learning environment is fully possible with COVID protocols and restrictions.
Caregivers for people with IDD are also greatly impacted by the pandemic. Many use services in the community, such as in-home supports, respite and day care. These services allow caregivers to work, shop and get a break from caregiving demands, which in some cases can mean total care (feeding, dressing, bathing) 24 hours a day, seven days per week.
Due to COVID-19 restrictions, some community services cannot be offered or are offered at limited capacity, leaving caregivers to balance work and their own self-care without the level of services and supports they experienced before COVID-19. For those people with IDD living in group homes or institutions, families may be limited in their ability to visit their loved one, and some are not allowed to visit in-person at all.
With the holiday season upon us, people with IDD, their families and their caregivers need your love and support more than ever. If you know a family or caregiver of a person with IDD, reach out to show you care. Offer to help with grocery shopping, laundry or shoveling the driveway and sidewalks. Or maybe just be a listening ear when times are especially stressful and tough. If you know a person with IDD, call or FaceTime to say hello and ask how they are doing. Take a few minutes and engage them in a virtual game of checkers, watch their favorite video, or read them a section from their favorite book. Advocate for them. Help them advocate for themselves. Make sure their rights to equal education, full inclusion in their communities, and ability to make decisions are enforced and respected.
Anything you can do makes a significant impact and breaks the isolation. Be the “gift” a person with IDD and their caregiver needs this holiday season. They deserve it.
Theresa Lewis is executive director of The Arc of East Central Iowa.