"The inclusion revolution," says Johanna, nodding to the Special Olympics campaign of ending discrimination against people with intellectual disabilities.
The idea is as simple as it is self-evident, advocates say. Everyone, including people with intellectual and developmental disabilities, thrives at home and in their home community. Nursing homes and institutions, long-term care facilities, serve no one's best interest. That's true now more than ever, when the coronavirus is ravaging nursing homes everywhere, anywhere, an estimated third of the country's COVID-19 deaths taking place in the very sanctuaries meant to serve those who are elderly and have disabilities -- people like Johanna; people like those she provides cares for in the group home. A pandemic within a pandemic, stacking on top of each other like nesting dolls.
Rebecca Cokley, a disability rights activist and the director of the Disability Justice Initiative at the Center for American Progress, looked up at the beginning of this crisis and the first fatalities she saw attributed to COVID-19 were people with disabilities. An advocate in Georgia; a gubernatorial appointee in Louisiana. She knows these are anecdotal, not statistics that tell the story -- though those numbers too are devastating: at least 49,000 deaths in congregate settings like nursing homes and institutions, according to the Autistic Self Advocacy Network -- but they tell a story, she believes.
"We know that, frankly, our lives are not as valued as people without disabilities when we go into the hospital," says Cokley, who has disabilities too.
That devaluation manifests in ways that are explicit, insidious, Cokley says. She herself was in the middle of a C-section for her second child when the anesthesiologist joked to the obstetrician, "While you're down there, why don't you go ahead and tie her tubes?" Cokley recalls. "Folks like her don't need to have any more kids."
It is institutionalized too: Take the state of Alabama, where rationing guidelines for medical care called out "severe or profound mental retardation" as potential justification to deny sick people, including children, access to a ventilator. Alabama agreed to disavow its policy in the face of complaints, but other states -- Kansas, Tennessee, Washington -- offer similar guidelines and face a similar barrage of legal challenges.
But this pandemic did not give rise to inequities in the medical system so much as unearth them, shove them out into daylight. That is to say, the problems aren't new but entrenched -- problems that existed before the coronavirus and will exist after it too.
There's not enough training, says Dr. Alicia Bazzano, the chief health officer for Special Olympics, who points to the 80% of the country's health care professionals who have not been trained on how to treat patients with intellectual disabilities, period, nor those testing positive for COVID-19 right now.
There's not enough communication, says Julia Bascom, executive director of the Autistic Self Advocacy Network. She says there's a dearth of accessible information and plain-language materials in general, and now in particular, on why public places are shutting down, on why everyone must wear masks, on why washing hands is so critical.
There's not enough nimbleness, says Nicole Jorwic, the senior director of public policy at The Arc, a human rights organization that advocates for people with intellectual and developmental disabilities. Hospitals have closed their doors, understandably so, necessarily so, to visitors as a means of infection control. But with that one small act, they're often not distinguishing between visitors and support persons. That's a precarious cliff to scale every day -- especially, she points out, because too many health care professionals are predisposed to looking past a patient with disabilities, rather than to the patient, when it comes to making decisions on how to provide medical care. And it's a really precarious cliff to scale today, in the throes of a pandemic.
Jorwic's brother has autism. Last year, on his way home from a Special Olympics basketball game, he slipped getting out of the car and broke his leg. It was February in Chicago; it was icy. Her brother is 6-foot-3 and more than 300 pounds, and Jorwic and her family couldn't help him get up, so they had to call an ambulance. Had Jorwic not been there -- had she been in D.C., where she lives now, rather than visiting Chicago, where she grew up -- she says her brother would have ended up in a nursing home that day. Instead, she was there, able to speak when her brother couldn't, because he doesn't use his voice. Able to show the nursing staff that he could, in fact, answer yes-or-no questions if only they'd create a board for him. If he fell now, if he came down with COVID-19 now, she wouldn't necessarily be there, nor be able to stay by his side. If he needed care now, he'd end up in a nursing home. That's the nightmare scenario, nursing homes and long-term care facilities -- the start and end of a dangerous, vulnerable loop, Jorwic says. At all times but especially today.
"They're hotbeds right now," she explains.
Community Services Group, the company Johanna works for, oversees residences in 13 counties throughout Pennsylvania. Among its 350 residents, five have tested positive for the virus; of roughly 1,000 staff members, 18 have contracted it. The company has been fortunate, says Peg Van Schaick, CSG's vice president of intellectual and developmental disability services. Spread has been minimal, and where personal protective equipment has been needed, it's been provided. (Though Cokley laments that most direct support professionals report much grimmer availability to critical supplies. "I have yet to hear of any folks that have enough of what they need," she says.)
But in many nursing homes, infections have run rampant. Bascom, from the Autistic Self Advocacy Network, says she's seen some congregate settings report 50% of residents falling sick.
So they are all pushing Congress to increase funding for home- and community-based service programs, funding that hasn't come their way yet even as relief packages 1.0 and 2.0 and 3.0 have passed. They need the money, they say, to shore up a home- and community-based service system that was teetering before this crisis and is floundering now, so people with disabilities don't end up in nursing homes right when they're most dangerous. They need the money to provide PPE where there is so little to be had -- for the direct support professionals, providers like Johanna.
"These folks are essential workers," Cokley says. "But often when people think about essential workers, they're thinking about doctors and nurses, or firemen and police. They're not thinking about the people who come into homes every day and help people roll over in bed so they don't get bedsores.
"There's a real need to expand what we're thinking about because those are lifesaving measures."
Direct support professionals are essential in deed, but often not in name, and so the uptick in PPE that has flowed to doctors and nurses and front-line workers has not flowed to them. They are essential in deed, but not in name -- at least not yet -- because too few people have Johanna's power of imagination. Reimagination, really. Johanna and direct support professionals were essential workers before the zombies came, even if she didn't fully realize it then, and will be essential workers once the zombies leave too.