The intellectual disability community needs COVID tracking

Despite some states showing a flattening of the curve of COVID-19, hot pockets of vulnerability continue to report increases in cases and deaths. But not all vulnerable populations are even counted. 

A recent report by the Chicago Tribune and ProPublica highlighted concerns of individuals with intellectual and developmental disabilities and their families. The report shows  21.5 percent of persons residing in large residential state developmental centers have tested positive for COVID-19. 

According to this report, Illinois has also recently started tracking infections in mid-size private residential settings, but infections and deaths in smaller community group homes are not being tracked. 

This is especially concerning as the Centers for Medicare and Medicaid Services halted regular inspections in early March to many of these care settings across the U.S. as they are overwhelmed during the pandemic crisis.

With reports from private advocacy groups suggesting people with IDD are dying at startling rates with little understanding of why, the lack of government tracking is alarming. 

There are over 400,000 people with IDD living in these small community group homes across the United States. Public health authorities need to take measures to protect this population. The Centers of Medicare and Medicaid committed to reinforce monitoring all reported cases and deaths of residents living in nursing homes by COVID-19. 

But for smaller group homes, there are no national tracking or monitoring mechanisms in place to track COVID-19 and as a result these group homes are ripe for supporting the ramped spread of the virus. 

As health professionals — one who has a family member with IDD, and the other a friend of and ally of people with IDD — we are worried. Due to COVID-19, residents in these homes are not allowed any visitors, including family. Almost all access to outside the home programming is on hold. 

Many residents don’t understand why their daily routines and important activities are cancelled or why their families are unable to visit. Most need assistance to understand the reasons why masks need to be worn and to wash their hands. 

Families are concerned because their routine visits are now cut off due to social distancing policies. 

Group home operators and advocacy agencies note that before COVID-19 they were already short-staffed. Many staff often worked at multiple facilities, and federal and state funding was problematic. They now face these issues at a higher level while struggling to obtain Personal Protective Equipment, or PPEs, and understand changing guidelines for managing suspected infections and implementing measures such as resident quarantine. 

In light of all of these issues, to be safe, one of us has brought their 44-year-old son to the family home for the time being. Having an option to bring family and friends home is a blessing, and one not every family is able to make. Many families do not have the resources and are not in the position to be so lucky. 

A letter to the U.S. Secretary of Health and Human Services from the Consortium for Citizens with Disabilities implores the government to monitor COVID cases in all residential settings, including small group homes of adults with IDD. 

Tracking this data is equally as critical to protect the safety and welfare of loved ones living there. Without mandatory tracking of COVID-19 cases at these community group homes and regular health inspections to ensure good hygiene and safety measures, the threat is real. Hundreds of people with IDD could die as a result. 

Tracking COVID-19 keeps many safe. The lag in data collection in nursing homes is considered part of how the virus was able to spiral out of control across communities and towns. Having an accurate picture of infected individuals is also part of the country’s plan to stem the spread of the disease. 

Public health authorities need to take specific measures to reduce the spread of COVID-19 in small group homes of people with IDD, including tracking pandemic cases and deaths.

Quite simply, who gets counted matters. 

Laura VanPuymbrouck, Ph.D., is an assistant professor in the College of Health Sciences at Rush University in the Department of Occupational Therapy. Sarah Ailey, Ph.D. is a professor in the Department of Community, Systems and Mental Health Nursing, College of Nursing, Rush University.