Amid the global COVID-19 pandemic, the risks to people with disabilities — who are 10 percent of the world’s population, or roughly 650 million people — remain critical and require urgent attention.
Especially vulnerable are personal assistants who support persons with disabilities living in the community. These daily care providers offer necessary assistance to disabled people, making social distancing impossible.
According to the U.S. Bureau of Labor, there are more than 3,000,000 personal assistants working in the U.S. to help people with disabilities, chronic illnesses or cognitive impairment. These personal attendants go into homes to help with such necessary activities as toileting, getting out of bed, getting dressed and making meals. They are performing these care duties right now without personal protective equipment.
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While efforts are being made at the policy level to address disparities in treatment, these personal caretakers are not included in this effort.
Sen. Kirsten Gillibrand recently called on the U.S. Department of Health and Human Services (HHS), Centers for Medicare and Medicaid Services and the HHS Office for Civil Rights to ensure health care is equitably distributed, including prohibiting denial or lower relative prioritization of care based on resource access amid the COVID-19 pandemic. This request should also include ensuring equitable distribution of personal protective equipment to personal assistants.
As a disability advocate, I know many in the disability community urgently need greater support and access to information but instead feel defenseless and abandoned.
Without further action from federal and state governments, as well as local service support agencies that have oversight of personal attendants, the disability community and their care providers are at serious peril of becoming infected, and could very well see disproportionate numbers of deaths.
Despite the need for close access and considered essential workers by executive order in states such as Illinois and Massachusetts, access to personal protective equipment such as masks, goggles, gloves and gowns is in short supply and may not be available to care assistants.
Data is limited as to how many people with disabilities are at risk of being infected by caretakers or infecting personal attendants.
For instance, Illinois’s Home and Community Service Medicaid waiver program shows that approximately 25,000 individuals must receive personal assistant support in order to remain in their homes. Nationwide, nearly 4.5 million home care workers visit older adults or people with disabilities in their home daily.
Congress has ignored this large and vulnerable community who use home service providers in the three previous funding legislative bills addressing the current health crisis. Nationally, many in the disability community have issued a call to action for policy change.
While participating in a COVID-19 protective equipment meeting with other area disability activists and staff from Centers for Independent Living, I heard multiple reports from concerned community members. They described scenarios where personal assistants have no access to equipment to protect a disabled person as well as the care attendant and their families.
Larry Biondi, the advocacy coordinator at the Progress Center for Independent Living in Chicago and a disabled person who uses personal assistants for his care, recently described in an email correspondence how overarching his concerns are because of the lack of equipment.
“My [personal assistant] works for other people and then comes to help me. If they don’t have [protective equipment] they are putting me, their other clients and themselves at a risk of getting COVID-19,” Biondi said.
Because of a lack of access to protective gear, many people with disabilities are in the position of choosing to risk exposure to COVID-19 or to confront the real health care risks that would follow if care is delayed.
For those members of the disability community who use personal assistance, there is an overwhelming sense of vulnerability in knowing that the care they need to maintain health or stay in their homes might place them in a predicament — one that increases not only the risk of becoming infected but the fear that if they become sick, they may not be given the same level of aggressive life-saving efforts than non-disabled patients.
In Illinois, for example, advocacy communities that include physicians, occupational therapists, disability advocates and advocacy organizations such as Progress Center for Independent Living and Access Living, as well as grassroots organizers, are working together to identify and create solutions.
Leaders in the medical, health care and disability communities sent a letter last month to Illinois Gov. J.B. Pritzker, Dr. Ngozi Ezike and members of the Illinois COVID Crisis Response team, expressing concerns and presenting strategies to enhance disability community supports and health services for disabled people. The governor and his team have not sent a response.
In Philadelphia, advocacy groups have taken it beyond letter writing and have filed a complaint with the HHS Office for Civil Rights, arguing the state’s plan for providing care during COVID-19 pandemic discriminates against people with disabilities.
Across the United States, advocacy groups such as Human Rights Watch are pressing the federal government to ensure disabled people living at home are part of their response plans.
Disability community groups in Chicago and nationally are working to collect firsthand stories of disabled individuals during this critical time to elevate social and political awareness of the impact of this crisis.
The pressure coming from communities across the country is an attempt to address the lack of initiative by each states’ social services organizations that administratively oversee these workers, such as Illinois’s Department of Human Services.
Disabled people are the employers of their own personal assistants. But they understandably have little network capacity to secure supplies of masks, face shields, gloves and gowns.
To be sure, there is a surge in demand by city mayors and health care providers describing similar scenarios with limited access to protective gear across all contexts and all communities. However, these conversations rarely mention disabled people.
The urgency to acquire protective gear and education on appropriate use for the disability community is palpable. Congress must include these concerns in the next funding wave to fight the fallout of COVID-19. Local, state and federal entities need to work with agencies and organizations of personal assistants to address the specific needs of this hotspot of vulnerability.