More than one year has passed since the United States first felt the effects of the COVID-19 pandemic. While much focus has shifted to vaccinations, high-risk individuals continue to face higher vulnerability to the disease, especially those with disabilities.
On March 18, 2021, Dr. Amy Houtrow, chief of Rehabilitation Medicine at UPMC Children’s Hospital of Pittsburgh, testified before the U.S. Senate Special Committee on Aging on the importance of addressing health care needs for at-risk Americans.
Below is an excerpt from her deeply personal and powerful testimony:
“I am approaching my testimony from the perspective of a person with disabilities, as a physician who cares for people with disabilities, as an advocate for heath equity, and as an academic with training and research expertise in health services and policy.
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“As they say, ‘We are all weathering the storm together, but we are not all in the same boat.’ My boat is small and scarred. I was born with an exceptionally rare genetic disorder that shaped my body in dysmorphic atypical ways and has shaped me into the person I am today. I know of limitations; I live with them. I also know of perseverance and circumstance. I knew right away that getting COVID-19 could easily kill me. I am an at-risk American.
“I am lucky that I could move the entirety of my work to the virtual space. Thankfully with emergency waivers, we have been able to successfully deliver telehealth care. Recent telehealth innovations and expansions have benefited many patients with disabilities during the pandemic and will beyond if they are promoted and supported.
“For the past year, we have all watched, in horror and with sadness, as COVID-19 ravaged congregate care facilities. But for every dark cloud, we must find the silver lining. As we plan for the future, we must assure the health and safety of people living in congregate settings, but we should also develop and promote strategies to keep older adults and people with disabilities living in their homes with the supports and services they need. To do this we need to strengthen home and community-based services and develop a more robust home care workforce. The $12.7 billion fought for by Sen. Bob Casey (D-PA) in the American Rescue Plan for expansion of Medicaid home and community-based services is an excellent step toward this effort.
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“Perhaps the biggest triumph of the pandemic is the speed at which vaccines were developed. Unfortunately, equitably distributing these vaccines has proven challenging. As a starting point, vaccine registration systems and administration sites must meet the standards of the American Disabilities Act and Section 504 of the Rehabilitation Act. Monies in the American Rescue Plan are much needed to address this urgent problem.
“Active outreach in communities is also necessary to help reduce existing disparities in vaccine access that exist today. Strategies to reach those in need, such as mobile vaccination units that can administer vaccines in people’s homes, should be expanded to vaccinate semi- or completely homebound individuals and people for whom home administration would be safer and easier than administration at a vaccine site. We should empower trusted community leaders to help reach people, whether in churches or barbershops, to improve vaccine distribution to those hardest hit by disparities. We need this now, and we need to have plans in place for the next pandemic.
“Lastly, we need to address the structural problems that make certain members of our communities more vulnerable to COVID-19 and other diseases. We need to make changes to our public health infrastructure and health care systems so that we are better prepared for the next crisis. We need to make it possible for all of us to thrive today, tomorrow, and beyond.”