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“We’re being punished again”: How people with intellectual disabilities are experiencing the pandemic

From ventilator restrictions to the challenges of self-isolation, people with intellectual and developmental disabilities are facing a crisis years in the making.

The novel coronavirus pandemic is exposing major cracks in the systems that protect Americans living with disabilities, particularly intellectual and developmental disabilities. And if they do fall ill, some states’ policies could restrict their ability to get lifesaving treatment.

For those living in residential facilities and group homes, or even those able to live independently with the help of visiting nurses, the pandemic poses a significant risk. Some people living with disabilities require around-the-clock personal care, the kind of care that’s virtually impossible to give during a pandemic that necessitates social distancing. Already, positive coronavirus cases have been found at group home facilities in New Hampshire, Missouri, and Maine, among others — and several people have died.

Making matters worse, in some states, access to lifesaving treatment for Covid-19, like ventilators, could be restricted, including for people who need ventilators on a daily basis (for example, people with some neuromuscular disorders) in Kansas, or, in Alabama, those with what the state has termed “severe or profound mental retardation,” including children.

In response, many Americans with disabilities and their allies are fighting back. In Alabama, disability advocates filed a federal complaint with the US Department of Health and Human Services against ventilator and health care restrictions, with similar complaints also being lodged in Kansas, Tennessee, and Washington. They argue that restrictions on lifesaving care for coronavirus are clear violations of the Americans with Disabilities Act and treat people with disabilities as though they are their diagnosis.

Treatment restrictions on disabled people ignore scientific evidence, said Shira Wakschlag, director of legal advocacy for The Arc, an organization focused on people with intellectual and developmental disabilities.

“You’re basically making an assumption about the individual’s quality of life [if] someone has an intellectual disability, regardless of the severity,” Wakschlag said. “[That] does not necessarily have any bearing on whether they can respond to medical treatment.”

But some are concerned that people with intellectual and developmental disabilities who may have just found jobs or community will lose hope because of the pandemic and its requirements.

“There are many who looked forward every morning to get up and to be able to go out and to be a part of something. Working, feeling that they’re part of a community, there’s something there,” Ricardo Thornton, a former resident of the since-shuttered Forest Haven Asylum in Washington, DC, told me. “And with what we have going on right now, we’re more isolated.”

A crisis decades in the making

Roughly 61 million Americans are living with a disability of some kind, according to the Centers for Disease Control and Prevention (CDC) — about 26 percent of the population. And in 2016, 7.37 million of those Americans were living with an intellectual or developmental disability.

While about 70 percent of those with an intellectual or developmental disability were able to live at home with the help of family and caregivers, about 681,000 are living in nonresidential settings, from supported-living apartments to group homes and, in 37 states, state institutions that can house dozens to hundreds of residents. In Texas, for example, roughly 3,500 people lived in state institutions as of fiscal year 2015.

But most people with intellectual or developmental disabilities who don’t live at home reside in smaller settings, commonly in group homes that may offer space for three to five people with full-time support from staff. Many of these group homes have contracts with state governments, which determine who gets placed where and what services they receive. (It’s worth noting that there is a great deal of debate among people with disabilities and their advocates about the types of residential facilities encouraged by state and federal government.)

Those facilities are incredibly vulnerable to Covid-19, a disease that spreads easily and can be particularly dangerous for people with preexisting conditions — including those with intellectual and developmental disabilities who might also have specific health problems. (For example, research indicates people with Down syndrome are more likely to have heart defects and digestive problems.)

But the crisis facing group homes and residential facilities goes far deeper. People living in group homes and residential facilities need full-time support, staff available 24 hours a day to help clients with basic everyday activities, from cooking and getting ready for the day to personal care. Hiring the right staff was hard enough before Covid-19, but maintaining staff-to-resident ratios at a safe level — typically determined by the state — is becoming a major problem nationwide.

“In order for a resident of a group home or other residential service to have that full life, they need dedicated, compassionate staff who can support them, guide and mentor them, and help them to achieve the personal goals that each has for their own lives,” said Jean Phelps, CEO of LifeLinks CLASS, an organization that provides support to people living with intellectual and developmental disabilities in Chelmsford, Massachusetts.

Before Covid-19, Phillips told me, it was hard enough to recruit staff to help residents, given the low wages and that many people don’t appropriately value the work. With day programs and work opportunities for people with intellectual and developmental disabilities shut down during the pandemic, some agencies were having issues maintaining safe staffing levels with residents being at home more often.

That experience mirrors those of group homes and residential facilities across the country. In Arizona, for example, Aires LLC, one of the state’s largest group home providers, has struggled with maintaining both staff and supplies.

As the Arizona Republic reported:

Instead, gloves are so scarce that Aires might run out of large and extra-large gloves in two weeks. That means some employees might have to change adult diapers without protection.

Staff at group homes earn minimum wage. Cleaning supplies are so hard to find that when Shaw was able to purchase floral-scented bleach from Amazon, she drove from Phoenix to Tucson to meet a group home staffer from Benson who needed it.

Aires’ pandemic plan also didn’t account for personal protective equipment. Each group home has one kit with a disposable mask with a face shield, gloves, a paper gown and shoe covers. No more.

She expects hospitals not to have capacity to accept the number of group home residents who could get sick. So that means employees will have to take care of people at home.

“The shortage of personal protective equipment is becoming a critical problem for group homes and facilities since it is much more difficult for persons with certain intellectual disabilities to keep physical separation,” said David Hutt, deputy executive director of legal services for the National Disability Rights Network, an advocacy group originally established by Congress.

He added that as hospitals will take priority for personal protective equipment in the case of a shortage, “there is an even greater chance Covid-19 will spread within [residential facilities].”

But concerns exist outside the residential setting. Some people living with intellectual and developmental disabilities have live-in aides or staff who visit several times a week to help with daily needs.

Thornton met his wife, Donna, at the infamous Forest Haven institution; they’ve been married for 35 years and were even the subjects of a 2003 CBS television movie. Thornton, who has an intellectual disability, told me that he and Donna have their own home in the Petworth neighborhood of Washington, DC, and they receive check-ins once or twice a week to make sure they have what they need.

But he hasn’t gotten to speak about the coronavirus with the staff who support him and his wife. “Everyone is scattered and staff are with people who need more support,” he said.

And he’s worried about making sure he and his wife could get help if they needed it. “My wife has allergies and she coughs a lot because of that and I worry that I won’t know if she is sick with more than just allergies,” he said. “I would want to make sure someone could assist her. I worry that we wouldn’t be able to get help because other people would not want to catch the virus.”

“Persons with severe mental retardation ... may be poor candidates for ventilator support”

Those concerns ring true for disability advocates like Wakschlag, who told me her work was currently focused on reminding states that federal disability rights laws still apply “even in the event of [a] ventilator shortage.”

Federal law prohibits discrimination on the basis of disability in federally funded health programs or activities. Still, in several states, guidance on ventilator usage during a public health emergency clearly states that some people with certain medical conditions, including intellectual and developmental disabilities, may not receive ventilator support.

The Alabama Department of Public Health’s Emergency Operations Plan notes that “persons with significant neurological impairments can enjoy productive happy lives,” but also says “persons with severe or profound mental retardation, moderate to severe dementia, or catastrophic neurological complications such as persistent vegetative state are unlikely candidates for ventilator support.” (The state has since said that its regulations were being “misunderstood.”)

Other states’ Covid-19 policies would remove ventilators from those who use them on a daily basis, like some people with neuromuscular disorders, and who “fail to meet” the criteria needed to keep them — generally signs of “estimated survivability.” That means that in some states, like New York, doctors could remove ventilators people are using for non-coronavirus reasons and give them to Covid-19 patients.

To disability advocates like Wakschlag, these policies seem to conflate needing support in the “activities of daily living” with the ability to respond to Covid-19 treatment.

“That’s basically saying anyone who has a relatively significant disability, whether cognitive or physical or otherwise, who requires a direct support professional or someone to assist them in taking a shower or getting to work or something like that, that because of those things that they require in their daily life — which have nothing to do with their ability to respond to Covid-19 treatments — they would not be considered as good candidates for treatment.”

For ventilator users, Wakschlag said, states are “essentially telling them you can’t come to the hospital without risking your life.”

In response to concerns from people with disabilities and their allies, the federal Department of Health and Human Services issued a bulletin on March 28 confirming that existing disability rights laws are still in effect, even during the coronavirus pandemic.

The Office for Civil Rights enforces Section 1557 of the Affordable Care Act and Section 504 of the Rehabilitation Act which prohibit discrimination on the basis of disability in HHS funded health programs or activities. These laws, like other civil rights statutes OCR enforces, remain in effect. As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.

“We are still sitting on the back burner”

But for people living with intellectual disabilities, even the everyday requirements of the coronavirus pandemic — self-isolation and avoiding close contact with others, for example — are extremely challenging.

“For some [in group home settings], the change in the routine of life has been a struggle, finding it hard to understand why they can’t go to a day program or work, or out in the community, understanding what social distancing means and learning that a visit with family members is not possible now,” Jean told me.

Even just getting through self-isolation is difficult, reminding some of time spent in institutions where leaving was never an option. “When I look back over that path [of being institutionalized] and look where we’re at now with the quarantine, I’m thinking that we’re being punished again,” Thornton told me. “For what reason? We don’t have no clue.”

Moving to a virtual workspace is also challenging for many people with intellectual disabilities, said Alison Whyte, who serves as executive director of the DC Developmental Disabilities Council (Thornton serves as vice chair).

“A lot of people with intellectual disabilities have never been adequately supported to use technology and to access it,” Whyte said. “So moving everything to a virtual space like we’ve been doing leaves a lot of people out and that’s been a big problem.”

There are even more basic issues, like what people living with disabilities are being told about the pandemic in the first place. Of people he’s spoken to, Thornton said, “Some people know about the virus, some have no clue what the virus is.” He added that when it came to information about the pandemic, the disabled community is “probably going to be the last to receive it.”

Carol Grigsby, chair of the DC Council on Developmental Disabilities, agreed. “It was very hard for anybody to get the officials to listen or take questions about people with disabilities,” she said. “That is starting to get a little bit better. But at the broader level of the city, you still don’t hear very much about the disabled population.”

I contacted the DC Office of Disability Rights; in response, DC Government Office of Disability Rights director Mathew McCollough said, “Protecting the health, safety, and well-being of all District residents is Mayor Muriel Bowser’s top priority. In order to support our disability community, we’ve put forward a number of resources to flatten the curve and ensure residents with disabilities have what they need to adhere to the District’s stay-at-home order during the COVID-19 public health emergency.”

But while the pandemic has made stark the cracks in the systems that are intended to support all people living with disabilities, Thornton wanted to make it clear to me that he and others living with intellectual and developmental disabilities can take part in the response to the pandemic as well.

“We would love to be more included in some of the discussion. We have a disability, we are competent, and we can accomplish a lot of things,” he said. “We want to be a part of making a difference in this problem. I think everyone has made a difference and I think we are still sitting on the back burner waiting to make a difference. So we want to be included.”

Correction, April 9: An earlier version of this piece incorrectly attributed a quote from Carol Grigbsy to Alison Whyte. It has been updated with the correct attribution.

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