The Virus Has No Boundaries: How COVID-19 Affects People with Intellectual and Developmental Disabilities

Disclaimer: The views presented here are of the authors and do not necessarily reflect the views of United Hospital Fund, its staff, or its board of directors. 

Dr. Anthony Fauci, the nation’s leading infectious disease expert, delivered a sobering take on how long the coronavirus outbreak would last: "You don't make the timeline, the virus makes the timeline." COVID-19 is not only making its own timeline—it is preying on our communities indiscriminately, unraveling our fabric and undermining our foundations. This is certainly true for people with intellectual and developmental disabilities (IDD), including those with cognitive deficits, cerebral palsy, Down Syndrome, epilepsy, neurological impairment, and autism—as well as the nonprofit agencies who provide for their care in the community.  

At the very heart of the IDD field over the last several decades is the concept of integrated community living—the development of group residences in neighborhoods. Now, the very thing that is a hallmark of the field has created an additional vulnerability for people with IDD during the COVID-19 crisis. 

Over a year ago, the New York Integrated Network for Persons with Intellectual and Developmental Disabilities (“NYIN”), a nonprofit organization, formed a data collaborative headed and facilitated by one of the member CEOs. Its purpose was to collect and analyze data to measure quality, cost, and outcomes for people receiving services and to create actionable strategies leading to improved quality of life for people with IDD and cost savings to agencies and the State. 

To illustrate the success of community living, the members of the data collaborative provide care to close to 4,500 people with IDD living in group homes throughout New York City. In total, these providers reach close to 25,000 people with IDD in the city every day with a wide range of services, including residential living and numerous community-based programs. They also employ 15,000 staff members and use $1.2 billion of public revenues to operate these programs. Another hallmark of the IDD field is that each person is part of a comprehensive program of services consistent with their “Life Plan.” The new reality is that these programs and plans are being disrupted by COVID-19.

In early March, in the absence of information from state oversight agencies, the NYIN Data Collaborative worked with three other large, New York City-based providers to shift our focus to COVID-19. People with IDD often have significant co-morbid cardiac, respiratory, gastro-intestinal, neurologic, and renal conditions, among others that are contributing to their vulnerability. As of this writing, the rate of COVID-19 infection for those in New York City group homes is about five times the general New York City rate; the rate of hospitalizations is almost three times that of New York City generally; and the rate of death is two times the rate in New York City. Over 200 homes have experienced COVID-19 cases, representing over 40 percent of the residential settings. A recent research brief from Syracuse University’s Lerner Center for Public Health Promotion approximates some statewide trends for people with IDD who are affected by COVID-19. 

These numbers clearly demonstrate the dramatic and tragic impact of COVID-19 on people with IDD who are living in these settings. Nonetheless, it has been exceedingly difficult and frustrating to get state public officials to pay attention to this issue and place a high priority on these homes to access testing, medical supplies, and clinical supports.

Group homes have the characteristics of congregate living: people live together, eat together, go to day programs or work together, and socialize together. There are also direct support professionals and clinicians, such as nurses and social workers, assigned to each home who are highly interactive with the residents. During the coronavirus pandemic, if one person or one staff member gets sick, that person’s exposure risk is magnified because of social distancing challenges.

While all the programs are using the guidelines of “shelter in place,” they are also confronting the reality and challenges of “care in place.” The providers of care and support for people with IDD have been aggressively organizing services, resources, and strategies to optimize the safety and security of staff and people in their care. This has contributed to the containment of the virus. However, the field of IDD still needs the following resources:

  • Testing for the virus and antibodies (staff and people served)
  • Additional funding to cover the costs of COVID-19
  • Access to ongoing medical supplies, including PPE
  • Access to additional clinical supports, including nurses 
  • Preparation for a potential second wave of infection
  • Approval and funding to create specialized recovery units to return people from the hospital or manage “care in place” for people with symptoms

The staff providing direct care to people with IDD are heroes. They are confronting their own fear and the virus with compassion and competence so that they can offer safety, comfort, and support to the people they serve.

Data Collaborative Members: ADAPT, AHRC New York City, YAI, Access: Supports for Living, ANIBIC, Birch Family Services, CP Unlimited, Westchester Jewish Community Services, Human Care Services for Families & Children, IAHD, LifeSpire, Services for the Underserved, Brooklyn Community Services, and HeartShare Human Services of New York.

Ron Colavito is President & CEO of Access: Supports for Living and leader of the data collaborative. Arthur Y. Webb is Executive Director of the New York Integrated Network for Persons with Intellectual and Developmental Disabilities (NYIN).