From left: Kandi Clubine in Arizona, Jamie Beck in Indiana and three workers at the Hugs Cafe in McKinney, Texas.
For 35 years, Terry Hall filled pots with seedlings of pansies, marigolds, chrysanthemums and other flowers and vegetables at a nursery in Mount Vernon, Washington, until his job was phased out during the coronavirus pandemic.
He was among a minority of developmentally disabled adults who had been able to find employment, and he had been putting in 40 hours a week at Skagit Horticulture, plus on occasions overtime. He quarantined in March when a co-worker tested positive for COVID-19, then in August, became ill himself.
"Terry announced he was having a little trouble tasting his food," his mother, Melba, said.
The nursery told his family it was worried about his safety and advised him to take a leave of absence. He is a friendly man and shook hands or patted people on the back or shoulder, his mother said, and so he stayed home and practiced social distancing. But when Janie Hamblin, a job coach with Chinook Enterprises, a non-profit organization that helps people with disabilities find jobs, called about his returning after the beginning at the year, she was told his position had been eliminated.
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How did he feel? "Sad," he said. He wanted a chance to prove that he could be safe at work.
The nursery said it could not comment on personnel matters but he and his family feel he was treated unfairly.
Before the pandemic, as many as 85% of people in the U.S. with intellectual and developmental disabilities did not have jobs, either full time or part time. With the economic dislocation brought about by the coronavirus pandemic, advocates are worried that at least some of the positions they did have will be gone permanently.
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“These are very hard-won jobs,” Peter Berns, chief executive of The Arc, the world’s largest national community-based organization for people with intellectual and developmental disabilities, said last year, at the beginning of the pandemic.
“We really are concerned with what happens when we come out of this crisis," he said. "Will we have suffered a major setback for employment?”
As the country begins to emerge from the pandemic, that remains unclear. Fewer people with disabilities were employed in 2020 compared to 2019, but more recently, labor force participation rose in February over January. Organizations in the field are redoubling efforts to convince employers to hire intellectually and developmentally disabled workers and let them show what they can do.
A year into the coronavirus pandemic, 25-year-old Hannah Hibben had kept only one of three part-time jobs she had in the Atlanta suburbs. She still erases hard drives at an electronic recycling center, but was furloughed from jobs at a yogurt shop and a cookie shop that were thought to be too risky for someone like her with Down syndrome.
She was protected from the danger that exposure to so many customers might bring, but she missed her jobs, her paychecks and her coworkers with whom she managed to stay in touch.
"We texted and we keep up on Facebook," she said in an interview on Zoom with her mother, Debbie Hibben, during which she wore blue and her mother yellow, the colors of Down syndrome awareness.
But she talked about being bored, something she rarely did before, said her sister, Hillary Hibben, a spokeswoman for the Georgia Council on Developmental Disabilities.
At the electronic recycling center, Digital Technology Partners' Work4Eli division in Conyers, Georgia, she was able to keep her position as an e-waste technician through a quarantine when a coworker tested positive for COVID-19.
And at first her family agreed that her other jobs, where she mopped floors and wiped down tables, were chancy. But now she is fully vaccinated and ready to work and so she found a new job, at a bakery called Nothing Bundt Cakes. She assembles boxes, prepares labels and restocks display cases, and because baking became a passion during the pandemic, is hoping to assist the bakers at some point, her sister said.
That she works in the food industry is not surprising. It is often a source of jobs for workers with intellectual and developmental disabilities. But the industry was also especially hard hit by the pandemic and at snack shops, for example, staffing remains below February 2020 levels by 79,000 jobs, or 10%, according to the National Restaurant Association.
"She's pretty special"
Jamie Beck also remained employed, at a hospital in Indiana. She knows how hard it was for her to find work, which came about only after at least 40 applications and a public appeal for a chance. She had been discovered on her own in her hometown of Economy, Indiana, after her mother died in 2009 and her step-father in 2012. She was placed into guardianship with a not-for-profit for children and adults with intellectual and developmental disabilities.
By the time the coronavirus pandemic hit, Beck, 30, had the job she liked at Indiana University Health Ball Memorial Hospital in Muncie, an apartment she shared, and the legal right to make her own decisions — with help — which she won through a court ruling terminating her guardianship.
“I have no choice to go to work or not,” she said last spring. “I have some patients at the hospital that need their room cleaned.”
Beck did well through the year, working overtime and netting her largest paycheck in June in the more than two years she had worked at the hospital. Beck cleans patients’ rooms, nurses’ stations and other common areas daily but is kept clear of COVID-19 patients, who were moved to a separate wing. In September she became a trainer at the hospital for students from the Erskine Green Training Institute in Muncie, which provides vocational training in hospitality, food service, healthcare, and inventory distribution industries.
A member of the court-appointed team advising Beck, Dan Stewart, who is also on the training institute's executive board, worried about her safety at the beginning of the pandemic, but was impressed by the steps the hospital was taking.
“Jamie’s just blessed.” he said. “She’s pretty special. She’s earned everything she’s gotten.”
Her job search shows just how difficult it can be for those with intellectual and developmental disabilities to find work at all. She visited between 40 and 50 businesses and was turned down everywhere until she appeared before the Richmond City Council to appeal for a chance. The next morning she finally was offered a job at a pizzeria. At the hospital she has been working overtime, filling in shifts for employees who have gotten sick. She received her first dose of the Moderna vaccination on March 13.
“I pay attention to my supervisor,” she said.
The Erskine Green Training Institute has about 200 graduates, 60% of whom were furloughed. As elsewhere, the jobs most in peril were in hotels and restaurants. In September, Stewart was worried about how many would be able to return to work, but as of the end of the year, every one had been called back or had found new jobs. Stewart credits the training they received.
Over the last year, relatives and others wrestled with helping employees like Beck evaluate and mitigate the risk. Advocates worked with employers to ensure they had personal protective equipment and other needed supplies, and considered what changes might help keep them on the job.
Even with those efforts, the percentage of working-age people with all disabilities who are employed is less than one-third of the percentage of people without a disability, according to the Bureau of Labor Statistics.
Workers on the Front Lines
In Glendale, Arizona, Kandi Clubine has also been on the front line, bagging groceries and collecting carts at a Fry’s Food Stores supermarket. She works 20 hours a week, Monday through Friday, and last year was earning a pandemic bonus of $2 an hour. Her mother, Ginger Pottenger, was apprehensive.
“I called the store manager, and I said, ‘Tell me what you are doing to protect employees, and tell me about the customers that are coming in. Are they being careful?'” Pottenger said.
Clubine wore a mask, was responsible for cleaning her workstation each time a customer went through the checkout, and had gloves at first, though now there are plexiglass barriers up to protect the workers.
Last spring, Pottenger could not sleep at night as she second guessed her decision to let her daughter continue to work. Eventually she stopped questioning herself on a daily basis, but she still worried and was prepared to reconsider if someone at the store was diagnosed with COVID-19.
“But she’s happy working,” Pottenger said then.
This spring, Clubine has been vaccinated and Pottenger is finally relaxing.
“Oh my God, this cloud we’ve been living underneath is now lifted,” Pottenger said. “I just held my breath until we got dose two.”
Clubine, who lives in a townhouse near her mother and step-father, worked throughout the pandemic. None of the employees became ill and customers are supposed to wear masks in the store, though Arizona never implemented a statewide mask mandate. The bonus she received ended, but the store has given employees $100 several times for groceries, Pottenger said.
“I don’t think she missed a day,” Pottenger said.
“It was one of the hardest decisions that I made but I do know how important work is for her, I know how important consistency in her life is for her," she said. "It was the right thing to do.”
Berns, chief executive of The Arc, said that keeping workers safe was a shared responsibility: the employer, who must provide a safe workspace, and relatives, community organizations and others supporting the workers. Throughout the pandemic, The Arc has urged everyone to follow the advice of local health authorities.
In February, the United States had 9.5 million fewer jobs than before the pandemic, according to the White House Council of Economic Advisers. Some 22 million workers lost their jobs in the first few months of the pandemic, and although many of them have returned to work, the council's chair, Cecilia Rouse, warned in a statement on March 5 that it could take more than two years of job growth at February’s pace to return to pre-pandemic levels.
Fewer people with disabilities had jobs in 2020 compared to 2019, according to numbers released in February by the Bureau of Labor Statistics, though the bureau does not distinguish between intellectual and developmental disabilities and physical disabilities. Only 17.9% of people with a disability were employed, down from 19.3% in 2019.
More hopeful numbers show that the labor force participation rate for working-age people with disabilities increased from 32.8% in January to 33.4% in February 2021, according to the Kessler Foundation, an advocacy group. The February numbers remained virtually unchanged in March.
“Over the course of the pandemic, we have seen people with disabilities staying engaged in the workforce — being on furlough or actively looking for work," Andrew Houtenville, the research director of the University of New Hampshire’s Institute on Disability, said in a statement.
Heart Conditions, Obesity and Other Risks
Some people found themselves out of work not only because shops or businesses closed, but also because they could no longer have their job coach with them or because they had heart conditions, were obese or had another comorbidity, said Donna A. Meltzer, CEO of the National Association of Councils on Developmental Disabilities.
"As the year went on and the coronavirus really began to infiltrate our lives we certainly began to see a lot of examples about how dangerous it was, still is, for people who have intellectual and developmental disability," she said.
"Sometimes it was simply because it just wasn’t safe to go out into the community," she said.
Meltzer's organization has tried to alleviate isolation that people faced, getting funding for cell phones, tablets, WiFi or training, and working with technology companies. And she and others are using this time to prepare for when the economy re-opens fully. People may be afraid, jobs might not return, housing might need to be re-thought to better protect against pandemics.
"There will be a lot of issues to be dealt with," she said.
Some groups responded to the pandemic by overhauling their programs, among them the Hugs Cafe in McKinney, Texas, which opened five years ago as a place where developmentally and intellectually disabled adults are paid competitively to learn job skills. About 2 1/2 years ago it added a greenhouse for flowers and plants. It received about 75% of its funds from its programs and the rest from donations, and
It closed the cafe a year ago, on March 18, after debating the ethical questions of keeping its kitchen open for its 24 employees with special needs and surveying some of them about whether they would feel comfortable coming in to provide curbside service.
“There was an emphatic yes, absolutely, please,” said Lauren Smith, the director of development.
To continue to provide employment, the cafe added bulk grocery items, delivered herb and perennial gardening kits from the greenhouse and then came up with an idea that has sustained it: making sandwiches to donate to people who could not afford enough food during the pandemic.
By July, food insecurity had doubled among families in Texas, according to Feeding Texas, the state’s largest hunger-relief organization. By November, when the U.S. Census Bureau conducted a survey, more than 2.5 million households reported not having enough food to eat in the week before.
The group is now making 230 bag lunches each week to be distributed on the weekends, working with the Jordan Spieth Family Foundation and hoping that its other donors will fund it.
“People were just so grateful,” Smith said.
The organization might continue offering the free bagged lunches, even when the pandemic eases. Being able to give to others was an unexpected bonus, she said.
“It really gave us opportunities to focus on how we could continue to develop skills and conquer challenges,” Smith said.
Others kept going because they were mostly outside, the Creative Living Community of Connecticut for example. It brings together employees with and without disabilities at a greenhouse in Vernon and a 10-acre farm in Coventry.
It lost business selling micro-greens when restaurants shut down, but was able to employ field hands and keep its farm stand running through November. This past year, it was able to pay five of the 40 participants in its vocational program, said the executive director, Patrick Byrne.
"We are always an agricultural-minded organization," he said. "We really didn’t have to shift or adapt too, too much."
"Decimated in One Fell Swoop"
Margaret Nygren, the executive director of the American Association on Intellectual and Developmental Disabilities, said it was slow work convincing employers to hire workers with disabilities and predicted unemployment would remain high.
"The gains that have been made in the last 20 years in employment have been decimated in one fell swoop," she said.
The challenge is greater than ever to show employers how valuable employees with intellectual and developmental disabilities can be, she said. They are pleased with the jobs that they get, they are reliable and they stay a long time, she said. Employers don’t know what an asset people with intellectual and developmental disabilities can be to their workforce, she said.
At The Alchemist Brewery in Stowe, Vermont, two employees with intellectual and developmental disabilities were among a dozen laid off early last year, but were rehired 12 weeks later. Bringing them back quickly was important, said one of co-owners, Jen Kimmich.
“The isolation was going to affect them probably more than our other employees,” she said.
The brewery, which saw a significant loss of income for the first couple of months, was forced to switch its business model from a focus on restaurants and bars to curbside sales. It is not as profitable as it was, Kimmich said.
“We are getting by,” she said. “We're managing. Our morale is good. Our employees and our families that work for us are happy and healthy, and that's what's most important."
