This summer’s tragedies overshadowed the 30th anniversary of the Americans with Disabilities Act in July, but Illinois did recognize the event virtually with speeches from state dignitaries and performances from artists with disabilities. Despite the brief celebratory spirit, though, a failure of state and local government to protect people with disabilities in the response to the coronavirus pandemic has dampened any sense of progress.
The U.S. declared COVID-19 a public health emergency in January, and, according to the Department of Health and Human Services, “People with disabilities should not be put at the end of the line for health care during emergencies.” Nonetheless, Illinois’ state agency responses to COVID-19 are not living up to their promise to protect the lives of people with disabilities. Months after the pandemic started, there remains no clear plan for how people with disabilities or their attendants might effectively access personal protective equipment.
As leaders of the grassroots coalition PPE For People With Disabilities, we have directly witnessed the lack of policy support for disabled communities.
Our coalition is organized by people with disabilities and individuals from disability advocacy organizations in Cook County. We have come together in direct response to the lack of effective and systematic methods for PPE distribution. To date, we have made and delivered more than 150 PPE packages, consisting of medical masks, fabric masks, medical gloves, face shields, reusable body aprons, soap and hand sanitizer — almost all from donations. We also have sent letters to the Illinois’ Department of Human Services Division of Rehabilitation Services expressing our concerns, but have yet to receive a full response with answers to our questions.
The ADA and legislation such as the Olmstead Decision outline mechanisms for people with disabilities to live independently in their homes, be close to families and friends and actively participate in their communities. Through DHS/DRS, people with disabilities can receive necessary Home and Community Based Services to live in their homes versus in institutions such as nursing homes. Currently, more than 25,000 individuals in Illinois receive support in order to remain in their homes.
As part of these services, Home Services Program attendants work with consumers in their homes and assist with daily activities, such as dressing and transferring into a wheelchair. These attendants are essential workers and are in the same risk category as other health care personnel. However, despite their crucial roles, they are struggling to obtain necessary PPE. The majority are people of color and are poorly paid for services that enable people to remain at home, indirectly protecting our emergency departments and hospitals from becoming overwhelmed during a pandemic.
From the beginning of the COVID-19 crisis, people with disabilities have been ignored by state agencies despite facing disproportionately higher mortality rates. Emergency response mechanisms that support the distribution of PPE appear to be nonexistent. The ADA mandates that services and supports are offered in the least restrictive environment. However, because many people with disabilities live in their own homes, they slip out of sight and out of mind for service providers. Similar to previous national emergencies such as Hurricane Katrina, people with disabilities are an afterthought or, at best, benignly neglected in state and national relief efforts.
Based on the most recent message to Illinois’ DHS service providers, the only PPE that the Division of Rehabilitation Services is currently providing are KN95 masks, which are not recommended for people with breathing problems or heart conditions.
Despite legislation such as the Families First Coronavirus Response Act, which other states are using to make emergency changes to their home- and community-based programs, Illinois still has no apparent or systematic way to distribute PPE to this group of people. This is a worrisome gap in Illinois’ pandemic emergency preparedness and potentially a sign of indifference to distributing PPE to this community.
The current system is clearly broken, at the expense of people with disabilities who use Illinois’ Home Services Program. We need to close the ongoing gaps in the COVID-19 public health emergency response and ensure the state is better prepared in the future. It is clear that emergency response for people with disabilities needs to change in Illinois if we want to live up to the ideals of the ADA and attend to the civil rights of all citizens.
Laura VanPuymbrouck is an assistant professor in the College of Health Sciences in the Department of Occupational Therapy at Rush University. Kira Meskin is an occupational therapist, community reintegration advocate at Progress Center For Independent Living. They are both co-leaders of the PPE For People With Disabilities Coalition.
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