The calls began coming in the first week of March. Staff at the group homes we work with wanted direction on how to protect their tenants. Considering that these homes housed individuals with developmental disabilities who also tend to have significant physical and psychiatric comorbidities, they were at high risk for complications from COVID-19. But staying inside, changing routines and shutting these individuals off from their families could stimulate significant aggressive behaviors. How should we handle this?
All the patients I care for have intellectual or other developmental disabilities. Roughly two-thirds of them live in a group home for their care. An even larger percentage go to school, day programs or jobs during the day, with regimented routines and schedules that typically are comforting for them; they like predictability. Given that most of the funding for the group homes, day programs and other services provided to this population come from the state, the staff at such homes and programs expected specific direction from the Division of Services for People with Disabilities. Even when it came, however, staff instead put their trust in our primary care clinic.
As with many people in this pandemic, we felt unprepared and unsure what the best direction would be for protecting the most vulnerable among us. Roommates in a group home often have different daytime activities, and thus different exposures. Staff members go home after work, potentially adding other sick contacts to the mix. Family members still wanted to see their loved ones who lived in group homes, potentially adding even more sick exchanges.
As a clinic, our nurse and physicians proactively contacted families and group homes
beginning the second week of March to recommend the standard precautions -- quarantine, including avoiding day programs or other public activities; physical distancing as much as possible; handwashing, etc. -- and tried to arm caregivers with constantly changing guidelines from the CDC, Utah Department of Health and University of Utah Health.
Sometimes the guidelines contradicted one another, but the basic principle was the same: Avoid unnecessary contact at all costs.
Further complicating matters, the Salt Lake City area, where the majority of our patients live, experienced a 5.7-magnitude earthquake on the morning of March 18. As you can imagine, the imposed distancing recommendations along with an earthquake that included many aftershocks ratcheted up the anxiety of a group that has higher rates of anxiety disorders than the general population.
My clinic is a program that one has to be accepted into, and thus we have a very defined patient population. We utilized our case managers, nurse and medical providers to reach out to as many people as we could to ensure they knew we were not closed but were engaging in virtual and telephone visits or in-person visits when needed. Our therapists and psychiatrists reached out to their patients and caregivers to make sure that they were handling the stress of the new normal as well as possible. We tried to reassure patients and caregivers as much as we possibly could when they were convinced they had COVID-19 despite having no symptoms. Although we did all we could to be proactive, some patients were hospitalized for psychiatric and behavioral issues from the stress of the circumstances.
In the third week of March, we discovered that some day programs remained open. We had advocated for their closure and thought all of them had already closed. The failure to follow the rules, particularly when schools and other public gathering places were shut down by that time, infuriated me and our team. Some patients in those programs have since tested positive for COVID-19.
We have seen numerous group homes experience outbreaks. Several of them had staff who tested positive with severe symptoms. When residents of these homes were tested, nearly all of them were positive, but thankfully they have (thus far) not had any symptoms. We are checking in daily on all of our patients who have tested positive to ensure no worsening of their health.
The hardest part for these individuals is their lack of understanding regarding the change in their environment and routine. Viruses and other microbes are foreign concepts that they cannot comprehend. Like everyone else, we are encouraging our patients to wear masks around others, but this has not been very successful. Many just take masks right off, refusing to even attempt to tolerate the new object.
I love my patients, as we all do, but challenges abound. In the midst of a chaotic world, you sometimes have to let go of the ideal in order to truly protect your patients.
Kyle Jones, M.D., is an associate professor in the Department of Family and Preventive Medicine at the University of Utah School of Medicine. He also is director of primary care and medical director for utilization management at the Neurobehavior HOME Program, a patient-centered medical home for those with developmental disabilities. You can follow him on Twitter @kbjones11.