Disclaimer: The views presented here are of the authors and do not necessarily reflect the views of United Hospital Fund, its staff, or its board of directors.
New York City has work to do if it wants to reach people with disabilities and underlying medical conditions who are at high risk for contracting COVID-19. Discrimination in favor of able-bodied people is current, historic, and systemic in New York City. If we can remove these barriers, we will not only make progress in vaccinating people with disabilities—we will advance emergency planning and the health of all New Yorkers.
According to the U.S. Census, nearly one million people with disabilities under age 65 live in New York City. They are not “the other.” They are us—people who are blind or who have difficulty seeing even while wearing glasses; hard of hearing or deaf; have difficulty remembering, concentrating, or making decisions; struggle while walking or climbing stairs; or have difficulty with self-care or doing errands alone. A disability can be present at birth or develop because of an accident, workplace hazard, or disease. Many of us can anticipate developing a disability as we age. The rate of disability is notably greater among people who are Black and among those who are gay, lesbian, or bisexual.
COVID-19 has hit our disabled community like a hammer. The disabled are three times more likely to have heart disease, hypertension, diabetes, or cancer—all of which place them at high risk of developing COVID-19. They have significantly higher rates of obesity (57% higher) than their non-disabled counterparts. People with developmental and behavioral disorders, schizophrenia, spinal cord injuries, and immunosuppression are all at high risk of developing COVID-19 and of suffering more serious symptoms.
Then there are the social factors that increase COVID-19 risk. Data from the American Community Survey shows that people with disabilities are far more likely to be poor on a long-term basis. Many are homebound, or have health aides that see multiple clients, or are living in institutional settings where the coronavirus has spread wildly. Some 43 percent of homeless people have a disability, according to the U.S. Department of Housing and Urban Development.
People with disabilities are also far more likely to report that they have been treated poorly or denied care; too often, some physicians deprioritize the care of the disabled, believing they have a lower quality of life and will not live long. Clinics, hospitals, offices, and equipment are often inaccessible, and individuals are too often denied the accommodations that they need and have a right to under the law. Sometimes, a failure to plan in an inclusive way is the problem.
There are strategies that can help avoid the worst outcomes for this large community. As COVID-19 bore down on the city last year, The Center for Independence of the Disabled, New York (CIDNY) reached some early understandings with New York City's Department of Health and Mental Hygiene and NYC Health + Hospitals about the need to collect data on testing and tracing people with disabilities. We hope to see the same data collection for the vaccine rollout, so that we can determine whether the city is effectively reaching people with disabilities.
Now that vaccines are available for people with certain disabilities and chronic conditions, we are determined to dismantle barriers to vaccination access.
Federal law (Americans with Disabilities Act), state law (New York State Human Rights Law), and city law (New York City Human Rights Law) all require public agencies and their private sector partners to remove barriers that result in no access, or inferior access to services—but the reality is far different. This lack of basic civil rights enforcement leads to poor and inequitable health care, or no health care at all.
We have a responsibility to the disability community to ensure that vaccine distribution is equitable and that this pandemic doesn’t further entrench the health disparities they experience. It is critical that we follow the law’s requirements, remove barriers, and provide reasonable accommodations and modifications. That means at least (and not limited to) the following:
- Access to interpreters for people who are deaf, and captioning on informational videos about COVID-19 and the vaccines
- Training materials for health care providers that explicitly address the concerns of the disability community
- Large print and alternate format materials so that everyone can understand the information provided and give informed consent
- Accessible vaccination websites and appointments (with alternatives for those who lack access to the internet and computers)
- Signage at vaccine sites reminding those who need help to ask for accommodation, with explanations not only on how to get one, but where to complain if they can’t
There are also many crucial questions: How will vaccine sites accommodate people who have speech disabilities? Or those who can’t use their hands to fill in materials at the vaccination site? If TTY, text, or videophone are used, will staff be trained on how to answer? Will people with mobility issues be able to sit while waiting on long lines? If they use wheelchairs will they be able to get in the door, use the bathroom, access the vaccination site, and be able to get hold of information about the accessibility of vaccine sites? All of these issues and more must be addressed.
Another essential part of the vaccine effort must be home visits for people who are unable to go out. Vaccine sites could be located at buildings that house large numbers of seniors and people with disabilities, to ensure that those at higher risk who have been advised to stay at home can get vaccinated without traveling. CIDNY’s advocacy has resulted in at least one seniors/disabled building being designated as a vaccination site, and our determined push for home visits has resulted in the beginnings of a plan to bring about home visits at some point in the future.
A wise colleague once told me that disasters are inclusive, but disaster response isn’t—unless we plan for it. As the vaccine rollout expands, the time to plan for our friends, neighbors, and family with disabilities is now.
Susan Dooha is executive director of the Center for Independence of the Disabled, New York.
United Hospital Fund has a long history of bringing together diverse perspectives to address critical challenges in health care in New York. In the current crisis, it’s more important than ever to hear from all parts of the health care system. Today’s commentary from Susan Dooha, executive director of the Center for Independence of the Disabled, New York, argues that the rollout of COVID-19 vaccines must accommodate those with disabilities. – UHF President Tony Shih