Harvard Law School Project on Disability provides legal support during pandemic

For people with disabilities the COVID-19 pandemic has had particularly pernicious repercussions, from increased exposure to the virus among those living in congregate settings to overtly discriminatory governmental policies, such as Alabama’s policy — now rescinded — to deny people with intellectual disabilities access to ventilators in the event of a shortage.

“The catch line that COVID is the great equalizer is false,” says Michael Ashley Stein ’88, co-founder and executive director of the Harvard Law School Project on Disability, known as HPOD, which since 2004 has worked to advance the understanding of disability law, policy, and education around the world. “It’s actually a huge magnifying glass on social inequalities.”

Michael Ashley Stein

Credit: Lorin Granger/HLS Staff Photographer Michael Ashley Stein ’88, pictured here at a 2017 conference at Harvard Law, is co-founder and executive director of the Harvard Law School Project on Disability.

Knowing that people with disabilities would be especially vulnerable during the pandemic to problems with healthcare access and other issues, HPOD immediately turned its attention to COVID-related initiatives and advocacy including supporting a complaint to the federal Office of Civil Rights about Alabama’s discriminatory policy. “We find even more urgency and need now for the work we do,” says Stein, who among many contributions to the field of disability law participated in the drafting of the U.N. Convention on the Rights of Persons with Disabilities. “The need has been staggering, and we’ve been privileged to be able to help.”

Take the experience of Deacon Tony Phillips, a Manhattan resident with cerebral palsy and developmental disabilities, and co-vice president of the Self-Advocacy Association of New York State, known as SANYS. Phillips has been an advocate for himself and others for over 30 years. In February 2020, just before the pandemic hit, he was hospitalized for about a week after an injury that required neurosurgery. Phillips wanted to return home while awaiting surgery, but the hospital didn’t ask him what he wanted. Instead, they asked his sister, who insisted he be sent to a nursing facility in the Bronx, which was far from his support network and apartment in lower Manhattan. When the pandemic broke out, the facility cancelled Phillips’ neurosurgery appointment without telling him. They didn’t help him access his emails or use his cell phone to call his friends, and he became a virtual prisoner. For months, he received no therapeutic services at the facility and his condition deteriorated. He went weeks without a shower, and he contracted COVID in June.

“I did not choose to be sent to the nursing facility,” Phillips said during a recent phone interview, “and I did not choose to delay my operation by eight months.”

When Phillips’ friends eventually tracked him down, they also contacted Hezzy Smith, HPOD’s director of advocacy initiatives, who knew Phillips through his work with SANYS. Smith drove from Boston to reschedule Phillips’ neurosurgery appointments (after the facility failed to do so for six months) and educated hospital workers about Phillips’ health care rights, including his right to consent to surgery. Smith is continuing to support Phillips as he seeks to be discharged from the nursing facility as soon as possible, and to have home-based services to support his return home after being away — against his wishes — for over a year.

Phillips shared his story as a panelist on “COVID-19 & Disability: A Holistic Examination of Pandemic Impact,” an online discussion presented April 14 by HPOD and the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at HLS. The event examined how vulnerable people with disabilities have been during the pandemic globally, including experiencing greater exposure to COVID-19, the increased negative effect of school closures on children with disabilities, and the difficulties for people with visual disabilities of the move to an online world.

The pandemic has isolated many people like Phillips from access to critical support and services in their communities, classrooms, and workplaces, Stein says. There have been higher rates of COVID transmission especially among those living in congregate setting, a higher incidence of layoffs from work, and less access to vaccines, he adds.

We still have a long way to go for people with disabilities,” says Phillips, who during his prolonged absence from work avoided being fired due to the efforts of another self-advocate, Chester Finn, who has shared his experiences growing up in the Jim Crow South as a visually impaired person with developmental disabilities on HPOD’s website. HPOD is also currently hosting Finn as part of an inaugural summer research fellowship for self-advocates, in collaboration with the Samuel Centre for Social Connectedness, as part of HPOD’s ongoing support for the Massachusetts Advocates Standing Strong’s task force on supported decision-making.

In the early days of the pandemic, HPOD developed a series of manuals in Mandarin Chinese about the COVID-19 virus and how persons with disabilities and their families could stay safe, a project led by Dr. Cui Fengming, director of HPOD’s China Program. HPOD staff have also collaborated with colleagues at the UCLA WORLD Policy Analysis Center to survey how school districts have delivered special education and related services to students with disabilities in virtual, remote, and in-person settings.

On the academic side, HPOD immediately turned its attention to crisis standards of care — or rationing of services and supplies — and how they discriminate against people with disabilities. In collaboration with self-advocate Anne Fracht, HPOD is researching the experiences of group home residents in Massachusetts during the pandemic, and Stein and HPOD Senior Associate Ari Ne’eman have analyzed the impact of crises standards of care and access to vaccines on Americans with disabilities.

Going forward, HPOD is planning focus groups with self-advocates to learn their thoughts about how policies should be changed. “Consistent with our ethical duties, we want to hear from self-advocates about their priorities,” says Smith, “so that we’re not ivory-towering the problems but being a voice and platform for the people who experience and navigate these systems on a daily basis.”