As the leader of an organization whose mission is to support individuals with disabilities, I believe inclusion is always important. During the pandemic, inclusion is more important than ever.
The pandemic has laid bare the fact that people with disabilities are particularly vulnerable to COVID-related risks. Although having a disability doesn’t by itself put someone at higher risk from the coronavirus, many people with disabilities have specific underlying conditions that make the disease more dangerous to them.
The disability community in the United States includes millions of individuals with underlying or preexisting conditions. For this reason, they often have greater health care needs than others and are more vulnerable to the impact of low quality — or lack of access to — health care services. When they do access health care services, individuals with disabilities are often treated with a shocking lack of respect and dignity.
Although, according to reporting by NPR, “nearly 20% of Americans have physical or mental disabilities….less than 20 percent of medical schools teach their students how to talk with disabled patients about their needs.” The result? People with disabilities receive inferior health care, less information about prevention and fewer screening tests. The need for accessible information about prevention, and robust testing, is particularly important during a pandemic, especially for a vulnerable population. For people with cognitive disabilities, explanations in plain language of what the virus is, and the need for mitigation measures, are critical.
Due to the prevalence of underlying conditions among people who are disabled, vaccination is rightly a priority for this group, particularly those who live in long-term care facilities. The direct support professionals (DSPs) who help these individuals take their place in the community should have the same status, yet some vaccine providers exclude them because they do not have the formal license of other health care workers, such as doctors, nurses and pharmacists.
Health care disparities are not the only ones that people with disabilities face. They are also among the most economically disadvantaged. In 2019, only 19.3% of persons with a disability were employed, versus 66.3% of persons without a disability. Even education is not an equalizer. At all levels of education, people with disabilities were much less likely to be employed than their counterparts with no disability.
COVID-19 has been very hard on people with disabilities in many other ways. Day programs for individuals with intellectual disabilities are closed, so those who count on these activities for stimulation and social interaction must do without. The DSP staffing crisis has grown even more acute, making support for people who are disabled increasingly challenging.
Social distancing has been particularly hard for a population that already suffers from isolation and stigma. COVID-19 has forced residential psychiatric programs to suspend referrals to day programs, slowing the recovery process and delaying re-entry into the community. Our day program at the Levin Clubhouse has operated continuously throughout the pandemic, either virtually or in person. However, the benefits of supportive in-person interactions are diminished because Clubhouse members are fearful of using public transportation or gathering in person, even in small numbers, and have stayed home. Increased isolation may lead to the resurgence of symptoms and rehospitalization.
What does inclusion look like in the age of the pandemic? From a legislative perspective: giving states enough money to cover the full cost of providing home- and community-based services to each person with a disability who’s currently on a waiting list. In Pennsylvania, that’s more than 13,000 people. Many DSPs struggle to support themselves and their own families financially. Strengthening the workforce ensures reliable supports for people with disabilities.
From a practical perspective: providing information in plain language and accessible formats — including sign language and video captioning — about how to prevent infection and how to act in case of illness.
From a health perspective: recognizing vulnerability due to underlying conditions and prioritizing vaccination for people with disabilities.
From a technological perspective: making virtual programming more accessible by subsidizing smartphones, tablets and internet access.
Finally, from a personal perspective: asking people with disabilities what they want and what would be helpful to them, and helping them to advocate for themselves. PJC
Nancy Gale is the executive director of Jewish Residential Services in Pittsburgh.