text: “Many states issuing stay-home or shelter-in-place orders aren’t including direct support professionals as ‘essential workers,’ despite how essential they truly are,” McCracken said.
  While some health aides and personal care attendants are typically considered essential, direct support professionals — those who work with people with intellectual and developmental disabilities to help them stay as independent as possible by, for example, helping them to eat, dress and wash themselves — are not.
  ANCOR has written a letter to the National Governors Association urging its members to include direct support professionals as “essential health care service workers” in the orders they’re issuing to curb the spread of the coronavirus.
  The organization is also requesting that the U.S. Department of Labor include disability service providers’ staff and direct support professionals in its definition of essential health care service workers.
  This workforce “was in crisis long before COVID-19,” McCracken said. There was already a lot of turnover and absenteeism among direct support professionals so “many providers simply don’t have the backbench needed” when school closures are keeping some workers off the job and the virus is claiming others.
  If their paid caregivers are sick or otherwise can’t come in, people with disabilities are left with few options. The Families First Coronavirus Response Act, signed into law last week, doesn’t allow people to use sick days to care for family members with disabilities who need help now.
  Marcie Roth, executive director of the World Institute on Disability, has a straightforward solution to this: Give people with disabilities money to pay whomever they choose to provide them with care.
  Since health insurance plans won’t cover payments to anyone who isn’t an accredited in-home service provider, Roth wants the federal government to offer funding to pay non-accredited individuals, such as friends or family members, for home care services.
  “Give individuals the flexibility to hire people and pay them to do the things that they need to get done in order to maintain their health,” she said.
  Jason Wentworth's son has autism spectrum disorder. School closures mean the 4-year-old is not receiving classroom therapies that are important to his development.
  Even school closures present greater challenges to the health and well-being of the disabled community. Shutting down schools is an inconvenience for everyone, but for many of those with disabilities, it’s the disappearance of a lifeline.
  Jason Wentworth, of Westport, Massachusetts, fears that his 4-year-old son, who has autism spectrum disorder, will backslide without the hands-on speech and occupational therapy he receives at his twice-weekly pre-kindergarten class.
  “He’s already behind on developmental milestones,” Wentworth said. With the state’s schools shut, he worries his child will lose some of the progress he’s made.
  “I totally understand the primacy of public health and keeping with the CDC social distancing guidelines,” said Wentworth. “We’re absolutely supportive. It doesn’t make the situation suck any less.”
  People with disabilities being treated as secondary to the rest of the population is something that Felicia Nurmsen, managing director of employer services at the National Organization on Disability, was rallying against long before the COVID-19 pandemic. But the crisis has amplified this problem, with many individuals downplaying the virus as only a risk for certain vulnerable populations.
  “The national narrative around ‘only’ — ‘it’s only affecting these populations,’” Nurmsen said with disdain, is dangerous because it paints the already neglected disabled community as disposable. “We need to discontinue that national narrative because our lives matter. And people with disabilities need to be involved in all aspects of this [conversation].”
  Ruthie-Marie Beckwith, executive director of TASH: Disability Advocacy Organization, fears that overlooking the disability community will lead to dire situations.
  We’re very worried that people with disabilities are going to be excluded from treatment. Ruthie-Marie Beckwith, executive director of TASH: Disability Advocacy Organization
  “We’re concerned about the protocols that hospitals have as it relates to triage — who gets treatment and doesn’t get treatment,” Beckwith explained. “We’re very worried that people with disabilities are going to be excluded from treatment.”
  Hospitals in some of the hardest-hit states, including Washington and New York, are already assessing how they will decide which patients will receive treatment in the likely event of a ventilator shortage.
  Bioethicist Charles Camosy recently wrote in the New York Post that the “hard truth” is that when there are limited resources, they need to go to those most likely to benefit from them, based on what is known about this particular disease and who is more or less likely to survive.
  But, he argued, “it should not be up to physicians to decide whose subjective quality of life deserves to be prolonged,” warning of the inherent biases that arise when others judge the quality of a disabled person’s life. “Wisely, our state [New York] insists that … disabilities unrelated to what is causing the epidemic shouldn’t serve as the basis for rationing.”
  Making these decisions based on disabilities would violate federal law, disability rights experts point out. But just because decisions shouldn’t be made that way doesn’t mean they won’t be. Experts say “there is no general and universal agreement on how patients and injured people should be triaged.” That leaves room for “the pestilence of ableism and ageism” to come into play, wrote Rabbi Elliot Kukla in an op-ed for The New York Times.