Jeiri Flores is normally a busy, upbeat 29-year-old. But amid the COVID-19 pandemic, her go-to thought has been dark. “If I get this,” she thinks, “I’m gonna die.”

This is not an unfounded fear. Flores has cerebral palsy, uses a wheelchair and needs assistance with everyday tasks, including making food and getting dressed. Her disability means it’s tougher for her immune system to kick illnesses; she’s still recovering from a bout of pneumonia she had in January. So beating COVID-19 could easily mean a protracted battle and months in a hospital—a prospect that comes with a cascading series of challenges unique to people with disabilities. At a time when all Americans are facing unforeseen obstacles and concerned about their futures, Flores and more than 60 million Americans with disabilities like her are facing perhaps the toughest road of all.

With hospitals restricting visitors amid the pandemic, Flores and others who rely on family and aides for assistance and advocacy would no longer be guaranteed that resource. If access to life-saving care became limited, Flores would be up against potentially discriminatory state health plans to ration care. And if she made it out of the hospital, Flores’s fight would rage on: she’d need to ensure she could continue getting support in her home without exposing the health aides she needs to the virus.

All of this is why Flores’ top goal right now is to avoid getting COVID-19 in the first place, which means staying at her home in Rochester, New York. But even following stay-at-home orders is complicated for people with disabilities. Medicaid allows Flores to hire a home health aide to help with daily tasks and a “respite worker” to take her grocery shopping or see her friends. But in recent weeks, an effort to avoid infection has curtailed the outings with her respite worker, especially since the worker’s partner still works at Target and could expose them all. Shortages of personal protective equipment combined with existing workforce issues and uncertainty over future Medicaid funding are making it increasingly difficult for Flores and those like her to stay at home.

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“This has completely changed my access to the community,” Flores says.

Roughly one in four adults in the U.S. has a disability, and an estimated 60% of Americans have at least one chronic health condition that could make the symptoms of COVID-19 more severe or deadly. Even in normal times, people with disabilities and chronic illnesses confront biases in medical care, face waiting lists to get support in their own homes instead of at nursing homes, and struggle to access government benefits. But amid a global pandemic, those challenges are heightened—and so far, lawmakers have mostly ignored their calls for help.

“You’re really increasing the risks to disabled people’s health when they don’t have access to these basic services,” says Rebecca Cokley, who leads the Disability Justice Initiative at the Center for American Progress. “This is really life or death for our community.”

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The Dangers of Nursing Homes

Congress passed another $484 billion relief bill on April 23 that focused mostly on funding for small businesses, hospitals and coronavirus testing. As the next relief package begins to take shape in Washington, advocates for disabled people are pushing lawmakers to, among other things, increase Medicaid funding for at-home care—a crucial mechanism to help people with disabilities avoid nursing homes or other group settings that have been breeding grounds for COVID-19.

“What the pandemic is putting a very fine point on right now is the fact that nursing homes and other congregate settings can be a public health hazard to people with disabilities,” says Nicole Jorwic, senior director of public policy at The Arc, an organization that supports people with intellectual and developmental disabilities. “What we need to do is provide more access to home and community-based services, so that they are not only integrated in their homes and communities as they should be, but also so that they are safe.”

Julia Ramos has seen the consequences of the virus devastating the Long Island nursing home where her grandmother lives with dementia. On March 25, when New York state began requiring nursing homes to accept patients discharged from hospitals, even if they had tested positive for COVID-19, Ramos was aghast. “It’s horrible,” Ramos says. “That’s just creating an explosion.”

By April 22, the 460-bed nursing home had seen 23 patients die from COVID-19 and 54 more had tested positive, including 17 people who came from local hospitals already infected. Stuart Almer, the president and CEO of Gurwin, was critical of the state’s policy requiring his facility to accept patients who had tested positive for the virus. “A different plan could have been developed to safeguard people who are positive and not introduce them where people are sick,” he says.

When a new patient gets infected, they—and their exposed roommate—may be quarantined in their current room, meaning the virus is not contained to just one area of the facility, and staff may need to care for both infected and non-infected patients. Ramos says her family feels helpless and her grandfather has been crying because he doesn’t know when he’ll see his wife again. “He is so worried that she is going to forget him and forget who he is,” Ramos says.

Julia Ramos’ grandmother, Angelica Mendez, with her husband Pedro Mendez, on their 64th wedding anniversary. | Courtesy of Julia RamosStaying Safe, and Isolated, at Home

For people with disabilities, “stay at home” orders only work if they can access the support they need at home.

Michele Kaplan, 44, who has brain cysts and spine issues that often prevent her from moving her limbs, usually gets assistance through a Medicaid program that pays for home care workers. But these workers don’t get paid sick leave, health insurance or any PPE, and so her usual personal care aides, concerned for their own health, had to stop coming once the pandemic hit Manhattan. Kaplan wanted to hire new aides, especially since so many people are out of work, but her program requires health assessments and vaccinations that would be nearly impossible to get with non-essential health care shut down due to COVID-19, she says.

Bryan O’Malley, executive director of the Community Directed Personal Assistance Association, says he supports the requirements under normal circumstances, but is lobbying state officials to temporarily loosen these regulations during the pandemic. “The policies are actually serving to take away the community resources that exist at the exact time we need them most,” O’Malley says. As the coronavirus leaves more people with potentially lasting health and economic consequences, he adds, the need for assistance is likely to rise.

For now, Kaplan has been switched to a traditional home care model, which means she rotates through a series of temporary assistants who don’t have experience caring for her. It’s not an ideal situation, but Kaplan worries that if officials determine the aides cannot meet her needs, they could recommend she move to a nursing home, an outcome Kaplan has experienced before and says is “terrifying.”

For people with intellectual and developmental disabilities, COVID-19 can be disorienting no matter where they are. Lori Leskin pulled her 24-year-old daughter Sami, who has a seizure disorder and does not use words to speak, out of her day program in March as the coronavirus outbreak expanded. Sami is a “very social being,” Leskin says, so the pandemic has been hard for her without her usual routine. But Leskin knows this is safer than any group setting right now and is hoping her daughter’s program will survive the shutdown. “We spent years building this life,” she says, “and here we are praying that we could put it back together whenever we get out of this.”

Kate Haaland has been in her Waterford, Connecticut home with her son Chris Horwath since March 13, when she also pulled him out of the day program he usually attends. Chris, 25, is deaf, legally blind and has significant intellectual and developmental disabilities that prevent him from understanding something like a global pandemic. To Chris, Haaland says, the past six weeks have meant no friends from his program and none of his normal activities like swimming or going to restaurants in town. “Most days we are in crisis most of the time,” she says.

While staying home is hard for her son, Haaland says she wants to avoid going to the hospital at all costs, especially because Connecticut’s current no-visitors guidance for hospitals does not have an explicit exception for people with disabilities who live at home. (Those who live in group homes are allowed to bring a caregiver.) “That would just be horrific for both of us,” Haaland says. When Chris has gone to the hospital in the past, Haaland is the one who communicates with doctors because he cannot speak or follow their instructions. Some doctors have questioned whether it is worth operating on Chris in the past, she says, so she has had to advocate for him.

Concern Over Medical Biases

Haaland’s experience with Chris’s doctors is not a unique one. Most medical schools do not teach future doctors about disability, says Dr. Lisa Iezzoni, a physician and researcher at Harvard Medical School. And most clinical trials exclude people with disabilities, so many doctors only interact with disabled people when they are already sick and seeking care.

Iezzoni, who has multiple sclerosis and uses a wheelchair, recently conducted a national survey of doctors’ attitudes toward people with disabilities. “The vast majority of doctors view quality of life for people with disabilities as less than that for people without disability,” she says. “That’s an implicit bias, or maybe it’s an explicit bias, that is inevitably going to affect how they approach a person with a disability.” Iezzoni’s own research and other studies have shown that disabled people face disparities in their rates of diagnosis, across various health outcomes and in overall access to care.

Dawn Gibson, who has ankylosing spondylitis and severe food allergies, says she is often dismissed as a black woman with chronic illness. After launching an online community in 2013 for disabled and chronically ill people to share their experiences, she became a patient advocate, speaking at conferences and pushing for more research into the impact of diseases on African Americans. “There is a systemic resistance to the pain of black people,” she says.

Even with this background, she is scared of going to a hospital in Detroit during the COVID-19 pandemic because she expects to be treated poorly. Several years ago, Gibson had broken out in hives due to a food allergy, and gone to the emergency room. But the staff, she says, assumed she had been taking drugs, so she had to fight to get seen before she passed out. “I don’t trust going in any of these facilities, but I can’t let that end my life,” she says.

Alice Wong, 46, sees these biases too. She has a progressive neuromuscular disease that means she uses a ventilator, attached to her wheelchair, all the time. When hospitals started talking about rationing ventilators during the COVID-19 crisis for the most “deserving” patients, Wong was angry but not surprised. At least 25 states have policies that could mean people with disabilities are less likely to get critical care if hospitals are overloaded, according to a report from the Center for Public Integrity. Six states’ triage plans allow doctors to take away ventilators from those, like Wong, who use them in everyday life to help other patients. Disability rights advocates have filed formal complaints in four states and Alabama revised its policy after the Department of Health and Human Services Office for Civil Rights conducted a review.

“Just because I need assistance with my life, that doesn’t mean that I can’t live successfully,” Wong says. She is the founder of the Disability Visibility Project and edited a book about people’s disability experiences that is coming out later this year. “There’s this idea that to have a full life, to have a quality life, it must be without suffering or pain. If you have a disability, that’s not compatible with ideas of a good life,” she says. “There’s a real missing experience and expertise in terms of just how resilient we are and how much we can offer the world.”

Helping Each Other Through the COVID-19 Pandemic

As the COVID-19 pandemic has swept across the country, disability rights organizations, activists and nonprofits have used their networks to care for their own communities.

The Disability Justice Culture Club in Oakland, California has launched a mutual aid network and is hosting workshops on self-advocacy, while Disabled American Veterans is helping people apply for benefits online, holding virtual job fairs, and has set up a disaster relief program to provide disabled veterans with small grants of about $250 to help cover immediate expenses like rent and groceries. So far, it has provided $13 million and hopes to raise more, says Dan Clare, DAV’s chief communications and outreach officer.

“The people that actually need the help are the people that have the hardest time asking for it,” says Jay Salazar, who is helping organize Disability Justice Culture Club’s mutual aid network.

People with disabilities organized on social media long before COVID-19 forced everyone to do so, but the pandemic has underscored those efforts. Many activists are using hashtags such as #HighRiskCovid, #WhatWeNeed and #WeAreEssential to highlight the disability community’s concerns, catching the attention of some lawmakers. Democratic Senators Bob Casey, Sherrod Brown and Elizabeth Warren all encouraged Twitter users to share their experiences to help the lawmakers push for increased funding earlier this month.

But nothing is guaranteed in the next stimulus bill, and in the meantime, the pandemic is affecting disabled people more and more each day.

“My fear is what the long term effects will be,” says Flores, the advocate from Rochester. “If I get corona, I’m gonna die because I’m disabled and someone along the lines has decided that my life is of less value. I’m not 30 yet. There’s still so much more that I have to do.”

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