STRATHROY — It’s an unexpectedly wintry day in March, and Julie Timmermans is starting her evening shift at Sprucedale Care Centre, in Strathroy, 35 kilometres west of London. Nudging her dish dolly forward, she manoeuvres around elderly residents and their nurses exiting the dining room. She’s given to smiling widely. She speaks softly and measures her words slowly. Her work scrubs — patterned with rainbow-coloured, jigsaw-puzzle-shaped butterflies — match the Tiffany light fixtures and floral-patterned chairs and curtains.
To begin with, she removes the cups, cutlery, and plates, which still have traces of chicken thighs, Salisbury steak, mashed-potato medley, and squash. She sets down napkins, salt and pepper shakers, and packets of jam and cheese for next day’s morning meal. Then, there’s a new seating chart to commit to memory — more residents to get to know a little better. Over the sound of staff scraping and stacking dishes, she briefly chats with her co-workers. One tells Timmermans that she’s “killing it” with the speed of her efforts. Another calls her a “rock star” and suggests that they go for a couple of “wobbly pops” after work.
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Timmermans is invariably punctual. And, barring a cold, flu, or family vacation, the 31-year-old doesn’t like to miss work. “[Sprucedale] is a good fit for me, but it wasn’t easy at first — the fast pace, I mean,” says Timmermans, who has Down syndrome and has been a dining-support worker at the centre since June 2017. “Now, it’s not so difficult, and I’m good at a lot of stuff. I’m dedicated, hard-working, and a people person.”
She enjoys the routine and keeping busy. She loves meeting and chatting with other staff members and residents who know her by name. “But, mostly, it’s my first paying job. And I like being paid,” she says with a laugh.
Today, there are more than 500,000 working-age Canadians with developmental disabilities such as Down syndrome, according to the Canadian Association for Community Living (CACL), which has been advocating for people with such disabilities since 1958. In many ways, people with Down syndrome, specifically, have far better prospects today than they’ve had at any other point in history. They’re now living not in government-run institutions but with their own families, in group homes, or independently — a model known as community living. Yet major employment barriers remain.
In 1982, Canada’s Charter of Rights and Freedoms gave people with developmental disabilities the same status as all other Canadians. Provinces and territories later followed suit with their own human-rights codes. Changing attitudes and cost concerns led to the closure of provincially funded institutions — by the late 2000s, only a handful remained across the country. Last month marked the 10th anniversary of the closure of Ontario’s last three, an event commemorated by the disability community on March 31. One year after they shut their doors for good, Canada ratified the United Nations Convention on the Rights of Persons With Disabilities.
“We’ve definitely moved the needle when it comes to community living,” says Sean Wiltshire, an employment specialist and board member with the Canadian Down Syndrome Society. “But we’re not, by any stretch of the imagination, at a decent place when it comes to the employment for folks with intellectual disabilities.”
What’s needed, says Wiltshire, is full economic citizenship: “When folks with disabilities have their own money, that’s when they’re free. That’s when they’re truly independent.”
The employment rate for people with developmental disabilities is below 25 per cent, less than a third of the rate for people without disabilities, according to a 2017 Statistics Canada survey. And those who do have jobs often work part-time and make less money. Canadians with disabilities, more broadly, earn nearly 45 per cent less than those without disabilities and are more likely to live in poverty.
There are several reasons for this: provincial and territorial income-support programs that penalize recipients for earning above capped limits; employment services that keep individuals underpaid and separated from the regular workforce; and negative community and employer attitudes.
There’s been a lot of progress made in terms of the status of people with disabilities, certainly, from a legislative and social perspective,” says Chris Beesley, CEO of Community Living Ontario. “And yet, if you look at someone with Down syndrome, specifically, the social perspective remains that there’s something wrong with that person. They’re not seen as productive; they’re not seen as having value and having a contribution to make.” But when they’re viewed as an employee, Beesley says, they’re “cast in a much more positive light.”
There’s also a business case to be made for companies and institutions to become more accessible. According to a 2018 report from the Conference Board of Canada, half a million working-age adults with developmental and physical disabilities could contribute to the competitive labour force — at rates similar to other Canadians — over the next decade. That could increase the country’s GDP by nearly $17 billion by 2030, when skills shortages and labour-market supply issues are expected to be more widespread.
“It costs a lot to hire and train and all those things, but here’s a labour pool that’s ready, willing, and able to work,” Beesley says. “They have equal or better productivity and attendance. They have equal or better safety records. They also have equal or better morale … Although it used to be sort of charitable, now it’s a smart economic decision to pair up someone [with a developmental disability] with a paid position.”
Today, the average earnings of people with developmental disabilities are $18,000, according to Statistics Canada. Nearly half receive provincial or territorial social assistance. In comparison, the average earnings of adults with disabilities as a whole are nearly $30,000. The Ontario Disability Support Program and Canada’s Registered Disability Savings Plan and Disability Tax Credit provide some incentives and assistance — about $15,000 for a single person per year — but ODSP can be challenging to navigate and can make it difficult for adults with any disability to find an employer. If an individual’s earnings, however modest, are considered to be just high enough by the Ministry of Children, Community and Social Services, they no longer qualify for ODSP.
At her job at Sprucedale Care Centre, which Middlesex Community Living helped her find, Timmermans works two split shifts, totalling three hours, two days a week, and earns $14.15 an hour. She’s occasionally called in to cover extra shifts — mostly in the summer, when her co-workers take vacation. She also volunteers nearly four hours every week at her local Salvation Army Thrift Store, the Strathroy Public Library, and a YMCA daycare, which was one of her high-school co-op placements.
“I feel very lucky to be working at this job,” Timmermans says. “I have a friend with Down syndrome who’s having a hard time finding a job right now.”
In July 2010, Timmermans experienced a stroke that affected her entire right side; two days later, she had a grand mal seizure, marked by violent muscle contractions and a loss of consciousness. She spent weeks being treated in hospitals and months undergoing intensive speech, physical, and occupational therapy at home. “I’ve worked hard to recover,” Timmermans says of her stroke. “I’m able to do lots of things again.”
But her speech and movement are now partially impaired. She has to take low doses of medication to prevent seizures and can work only for relatively short amounts of time. Decisions can be a source of frustration and fatigue. So, for Timmermans, it’s a matter of “keeping up the pace, and keeping going” as best she can.
Until recently, sheltered workshops and day programs, which provide some vocational training in exclusive environments, were among the most common approaches to supporting people with developmental disabilities. In the absence of other employment options, they represented a “reliable form of respite and daytime activity” for individuals and their families, according to the CACL. The problem, it says, is that enclave-based employment reinforces marginalization and often sees participants completing contracts for agencies without being paid a minimum wage, instead receiving a so-called training stipend (or monthly or weekly allowance) for activities classified as some combination of day activity, training, and employment preparation.
The good news, disability advocates say, is that demand for such services is now falling across the country, and they’re far less prevalent in Ontario. In May 2018, the Liberals’ Fair Workplaces, Better Jobs Act (Bill 148), eliminated an exemption in Ontario labour law that had allowed people with developmental disabilities to work for less than the minimum wage. (The Progressive Conservative government’s Bill 47, Making Ontario Open for Business Act, has delayed the repeal of the exemption.)
Yet another major barrier remains: employers’ attitudes toward people with developmental disabilities — and their reluctance to hire them. According to a 2014 report from the Institute for Research and Development on Inclusion and York University, many worry about additional training, work hours, supervision, and job accommodations, as well as potential legal liabilities.
Some legislative action is being taken, though: in 2005, the Accessibility for Ontarians With Disabilities Act mandated that the province develop accessibility standards for areas including hiring and employment practices and ensure that the public and private sectors meet them. The ultimate goal of the act is to make Ontario fully accessible to 1.8 million people with disabilities by 2025. Nevertheless, despite the province’s 2015 accessibility action plan — called “Path to 2025” — implementation has fallen behind in recent years, say disability advocacy groups such as the AODA Alliance.
At the national level, the Accessible Canada Act (Bill C-81) is making its way through the Senate. It’s aimed at “identifying, removing and preventing barriers” for the estimated 4 million Canadians with physical, sensory, mental, intellectual, learning, communication, and other disabilities. But its scope is limited to government agencies and programs, as well sectors that fall under federal jurisdiction.
“Most people in the disability community view [Bill C-81] as a starting point,” Wiltshire says. “We have concerns that it’s limited to government programs and services, but we hope that it’ll be adopted as a model by [the private sector]. Besides, forcing businesses to do anything will go badly. They need to support [accessibility] because they want to, not because they have to.”
Wiltshire, for one, hopes that happens sooner rather than later. “Many people with intellectual disabilities have aging parents, and there’s not a lot of estate planning so that individuals are able to manage their own life once their parents pass away,” he says. “We just have to create the streams that allow them to work to their capacity, to be taxpayers and fully contribute to society.”
Community agencies and service providers often fill the gap, helping people with developmental disabilities find and keep jobs and assisting employers in placing them in traditional retail, service, maintenance, and office positions.
Jackie Moore — a labour-market consultant for Community Living Ontario and ReadyWillingAble.ca, a national inclusive-employment initiative — says that “a lot of the time, it’s just working with employers to help them understand that it may look a little bit different than how they typically recruit, onboard, and [train] someone.” Moore advises them to communicate better, make accommodations when necessary, and be more flexible overall. “Together, we’ll try to work around whatever may present a barrier and find a way that will set someone up best for success,” she says.
The Ontario Disability Employment Network works in a similar fashion. A non-profit funded by the province, ODEN is a network of 120 agencies, each focused on working with people with a different type of disability — particularly Down syndrome and autism spectrum disorder — and their employers.
“Mailing, faxing, retrieving documents, setting up meetings, and greeting customers and clients — these are all soft skills that will be increasingly important for people with developmental disabilities in the workplace, especially with digitization and automation,” says Ingrid Muschta, a diversity-and-inclusion specialist with ODEN. “There are a lot of barriers, though, that have been built within the HR processes, albeit inadvertently, and that have kept a lot of people who are quite capable out of the workforce. So we help [employers] build that internal capacity. That way, they can attract people who have a disability and avoid the pitfalls when it comes to managing people who have a disability.”
For instance, Muschta says, many companies now use online portals for their application processes. Those with cognitive disabilities may require longer to process information, meaning that their session may “time out.” ODEN recommends that employers offer job applicants information in alternative formats and assure successful ones that arrangements for interviews can be made — at no additional cost — as part of the recruitment process.
“When businesses hire inclusively with motivated intent because they understand the business proposition of an inclusive workforce,” Muschta says, “that’s when success is sustained long-term.”
Muschta, who is also the parent of an eight-year-old son with Down syndrome, says that children should, generally speaking, be encouraged to be more ambitious.
“We often ask kids in elementary school, ‘What do you dream that you’re going to be when you grow up?’” she says. “But how many kids who have Down syndrome are being asked that same question early on? In the Down syndrome community, in particular, we don’t often find parents pushing their children to go and get meaningful co-ops, summer jobs, and other positions. So there’s an opportunity for families, service providers, and schools to do a much better job of mentally preparing students for the meaningful work that’s out there.”
In other words, higher expectations lead to better outcomes in the world of employment, Muschta says. “To parents [of those with developmental disabilities], I just say, dream bigger and ask more of [your children].’”
For Timmermans, life isn’t just about work. She enjoys spending time with her boyfriend, friends, and family; going out to dinners and the movies; and hanging out at bookstores and shopping malls. She won a medal in curling at the 2019 Special Olympics Ontario Winter Games. One day, she can see herself moving out of her parents’ home and into one of her very own — maybe with some friends.
“I’m doing very well now, and I’m kind of good where everything is,” she says. “And there is this one other thing I could say about myself: I’m very proud.”
Kevin Spurgaitis is Toronto-based freelance writer and editor. His work has appeared in the Globe and Mail, the Toronto Star, and the Guardian, among others.