Disability Advocacy: Reflections from COVID-19
After several years as a Navy doctor, returning to PM&R residency training in the early 1990s was like stepping into a new reality filled with incredible rewards and shocking challenges. I was immediately impressed by the need to advocate for people with disabilities who were so clearly underserved by the medical community. I became involved in the AAP to develop my skills, including those related to patient advocacy. During my career as a teaching physician, program director, student affairs dean, and AAP Board member, I have been honored to interact with dozens of academic physiatrists who have eagerly embraced the role of advocate. Here you will find the stories of three women who have answered the call to serve in this way. Each of us began our advocacy work within our own institutions and followed different paths to a national platform. We want you to remember that all physiatrists are uniquely qualified for advocacy.
– Laura Kezar, MD, University of Alabama at Birmingham
Cheri Blauwet, MD, Spaulding Rehabilitation Network/ Harvard Medical School
As an academic physiatrist, a person with SCI and a wheelchair user, disability advocacy is in my blood. I’m a proud member of the “ADA Generation,” growing up in a world where my civil rights were largely recognized, due to the dedication of generations who came before me. Their personal sacrifices paved the way for my professional empowerment.
As the COVID-19 surge approached, it became clear that we, in physiatry, had to take a leadership role in preparing our large health care system to meet the unique needs of the disability community. My work has been primarily focused on ensuring that disability is considered a central aspect of our broad health equity efforts and that the needs of people with disabilities are not forgotten.
Mobilizing the Disability Voice. As the COVID-19 response was launched, Spaulding Rehabilitation Network created a Disability Equity Task Force, inclusive of representatives from all of our system hospitals. We recently shared our work during a national webinar focused on COVID-19 and health equity, and I participated in an AAPM&R webinar focused on “Ethics Disability and Trust: Closing the Gap in PM&Rs COVID 19 Response.”
Universal Access. The requirements for PPE and restrictive visitor policies created immediate and serious challenges for patients with disabilities and their families. We advocated at the system level for the revision of visitor policies to ensure that certain patients with disabilities can have a family member or advocate at the bedside, and that this be considered an accommodation rather than simply a “nice thing to do.” The system also procured several thousand transparent face masks to be used by the deaf or hard of hearing communities.
Disability Data. Federal efforts to call for the collection of health equity data in the COVID-19 response have escalated, largely focused on race/ethnicity. As advocacy efforts around disability data continue, we have decided to “think globally, act locally” and implement data collection through an EPIC module that will capture this information at the time of patient registration.
Clinical Services. As we continue to learn about the impact of COVID19 on long-term physical, cognitive and mental health, it is increasing clear that physiatrists have a role to play in meeting the rehabilitation needs of this growing population. At Spaulding, we have launched a COVID-19 Rehabilitation Program based on a combination of telehealth and traditional care.
Advocacy. People with disabilities have been disproportionately impacted by COVID-19, in large part due to structural inequities. In May, I was appointed to the City of Boston Mayor’s Health Inequities Task Force. We have submitted letters to the City Council regarding the risk of disability bias in the COVID-19 response and are starting a campaign on structural changes to how our underfunded state nursing facilities operate.
Kristi Kirschner, MD, University of Illinois College of Medicine
I started my career in 1990 - at the dawn of the Americans with Disabilities Act (ADA). It was a thrilling time to come of age in PM&R. I was hired by Henry Betts, MD for my first job. He supported efforts to develop the RIC Women with Disabilities Center in 1991. I spent the next 15 years mapping disability and ethics through the RIC Donnelley Family Center for the Study of Disability Ethics. After leaving RIC, I moved to the University of Illinois and focused on social justice, health care access and medical education. These formative experiences prepared me to “jump into” discussions about COVID-19. Since February, my priorities have been:
Crisis standards of care, pervasive discrimination, bias and stigma, and lack of accommodations and access for people with disabilities. Due to the work of disability advocacy organizations, categorical exclusions (such as Spinal Muscular Atrophy, intellectual disability and brain injury) were removed from state guidelines. Most of my work has been providing education and resources with three bioethics listservs. I also wrote a commentary on “All Bodies: A US Perspective”.
Including people with disabilities in pandemic planning and outcomes evaluation. We don’t collect data about disability in health care and therefore have to infer. I have been working with others on legislative actions on the Collection of Disability Status Data in Mandated Reporting Regarding COVID-19 Testing, Diagnoses, Treatment, and Outcomes.
The invisibility of direct service workers. I wrote for the Commonwealth Fund advocating they be considered essential health workers, and have access to PPE, training, hazard pay, sick leave and health insurance.
Organizing a collaborative of Chicago disability advocates and clinicians who care for people with disabilities to work on getting PPE to people with disabilities, outreach to the Governor and City health departments, and hospital policies to allow people with disabilities have a support person stay with them.
Developing a two-week COVID-19 elective focused on “Pandemics: Public Health, Ethics and Humanities” for the University of Illinois College of Medicine’s 3rd and 4th year medical students, which I am teaching three times this spring/ summer.
I hope PM&R doctors can continue to incorporate advocacy into their DNA, in whatever ways individuals are comfortable. Our patients need us to speak out and stand in solidarity - particularly as we reach the 30th anniversary of the ADA and look to all the work we still have left to do.
Elizabeth Sandel, MD, UC Davis/ Paradigm Management Services
I got involved in disability-related advocacy in the late 1990s when I held various leadership positions at Kaiser Permanente. I served on Kaiser Permanente’s National Diversity Council as the Director of the Center of Excellence for People with Disabilities. Through this work, I was able to connect with the disability community and share their voices in a disability handbook and other materials for providers, as well as an annual conference.
My response to the COVID-19 pandemic has been directed towards my work on disability advocacy and outcomes research over the years. I turned to researching and writing about medical rationing, as exemplified in the crisis standards of care many states have developed or revised for addressing shortages during epidemics. Some of these healthcare guidelines have been criticized because their recommendations reflect bias toward or patently discriminate against people with disabilities. I talked to people with disabilities about these issues: on a podcast with Kim Justus at Brain Injury Radio; with Gina Bitermundt, Adaptive Sports Consultant at Kaiser Foundation Rehabilitation Center; with Catherine Kudlick, Executive Director of the Longmore Institute on Disability at San Francisco State University; and with Silvia Lee and Claudia Center at the Disability Rights Education and Defense Fund (DREDF).
My article about discrimination based on disability and “underlying conditions” in relation to medical rationing appears on MedPage’s KevinMD. I discuss prognostication in healthcare and the failures of prognostic tools such as the Sequential Organ Failure Assessment (SOFA), used in crisis standards, to predict outcomes for individual patients. I argue that SOFA was created for population studies, not individual decisions about medical rationing, and that we have little experience using it for people with disabling conditions. I am currently working with DREDF to evaluate how the SOFA or another measure could be modified to account for disabilities and conditions that may unfairly impact a patient’s final SOFA score.
On a personal note, advocacy for people with disabilities has been a family campaign for more than thirty years. I have a daughter with developmental disabilities who went through the public special education system and has used public supports. When the pandemic hit, she had been employed full-time at a luxury hotel for more than seven years. She and her husband both lost their jobs in late March along with their employer-based health insurance. Having helped my daughter achieve much more than was expected of her in adulthood, our family now faces more hurdles than ever because of the inadequacy of our healthcare systems and healthcare reimbursement methods, and the challenges of the red tape of our bureaucratic and inadequate “social safety nets”.