Don't Dash Our Dream COVID-19

Our daughter Allison lives in a residential treatment center or boarding school for students with intellectual/developmental disabilities and serious behaviors. We've seen during the COVID-19 pandemic how congregant settings like this have a much greater potential for the virus to enter and spread. And frankly, that's worrisome.

Even though our daughter and her fellow students had been isolated in their residences and home-schooled since the start of the pandemic, the Direct Support Professionals who care for the students go back and forth between their lives in the community and work. Unless you have a truly closed system and/or 100% adherence to Centers for Disease Control and Prevention guidance regarding personal protective equipment and other safety measures, there is potential risk.

In early July, we got the call we feared — our daughter had contracted COVID-19 and was being moved to an isolation house for 14 days with other students who tested positive. While she has underlying conditions that put her at risk for serious complications from this beastly virus, her symptoms were mild — congestion, runny nose, occasional dry cough — and she appears to have made a full recovery. A lot of prayer and helicopter parenting from afar were our coping mechanisms.

In spite of this very real scare — when our daughter ages of out of her residential school next year, our preference is still for her to live in an intentional community for people with intellectual/developmental disabilities and serious behaviors.

The COVID-19 pandemic is certainly giving rise to many policy discussions that must be had to reinvent service delivery for people with disabilities, one of the most vulnerable and impacted populations during this pandemic. But we can't let fear of something like an infectious disease outbreak in congregant settings take away family choice.

Our family will continue to advocate for and work toward building a safe intentional community where our daughter and others like her can live in their forever homes supported by staff uniquely trained to work with people with intellectual/developmental disabilities and serious behaviors. And we will speak out against Home and Community Based Services Settings Rule proposals that make it more difficult to create intentional communities.

Our dream for a life-long community for our daughter won't be dashed by COVID-19.