Penelope Shaw, PhD, has long been an advocate and activist for patients with disabilities and for nursing home residents nationwide. Since 2017 she has been a member of Massachusetts General Hospital's Disability Patient Focus Group and last month was one of 25 individuals selected to be part of the Coronavirus Commission for Safety and Quality in Nursing Homes. The commission’s mission is to review nursing homes’ response to the COVID-19 pandemic to then help inform current and future responses to COVID-19 and potential future infectious disease outbreaks within nursing homes.

“In my facility, not having enough direct care staff in my facility has been our biggest challenge,” says Shaw, a retired college professor who now lives in a nursing home with functional limitations from an acute episode of Guillain-Barre syndrome. “And when we do not have enough staff, that means a facility of individuals with disabilities gets neglected.”

The commission also includes infectious disease experts, directors and administrators of nursing homes, academics, state authorities and clinicians. Commission members will meet throughout July and will issue their report on September 1.

“I'm hoping the commission will, in the short-term, come up with actionable ideas about how best to prepare for pandemics, and to provide good care during and after pandemics for all nursing home residents,” says Shaw. “And I'm hoping the commission will support long-term changes to defund nursing homes as we currently know them, and support policy changes to fund community living with supports instead.”