As hospitals all across New York State restrict visitors, because of the risk of spreading the infectious COVID-19 virus, many critically ill patients find themselves in medical solitary confinement. This frightening new COVID-19 reality is especially profound for individuals with intellectual and/or developmental disabilities (I/DD).

Individuals with I/DD often have more complex health needs and complications. They also depend upon familiar staff and family to assist them in communicating to others and helping them understand their own health information.

In the case of a Care Design NY member, his mother found him suddenly stricken and unresponsive in bed. He was rushed to the hospital. His diagnosis was pneumonia in both lungs. And because he was being tested for COVID-19, hospital visitors were prohibited.   

His mother tried unsuccessfully to get updates from the hospital on his condition until his Care Design NY Care Manager’s supervisor intervened and contacted the provider. She was able to learn and communicate to the parents that their son’s pulse oxygen and blood pressure were very low and getting worse.  They were told that there was nothing to be done except pray.

"...THROUGH THE CARE MANAGER SUPERVISOR'S EXTENSIVE ADVOCACY AND INTERVENTION, THE PARENTS ARE AT PEACE TODAY"

Finally, after numerous phone calls, too many to count, to social workers, care managers, and other support groups, the Care Manager Supervisor reached a patient advocate who was able to allow the parents access to the hospital. A two-minute visit to his bedside was a gift from heaven.

His mother commented afterwards, “he looked like an angel and doesn’t appear to be in pain.” She was also comforted by his hospital caregivers who reassured the parents that his medical needs were not only looked after, but his emotional needs as well. They frequently held their son’s hands providing comfort and assuring him he was loved.

While his condition remains grave, through the Care Manager Supervisor’s extensive advocacy and intervention, the parents are at peace today having met his compassionate, hospital care givers.