The Attendant Services Program helps disabled students live an independent life. With classes returning to normal, why hasn’t the university brought it back? By Sarah Trick – Published on Oct 21, 2021
OTTAWA This fall, students at Carleton University returned to campus. The school’s residences are open, most classes are now being held in person, and clubs, activities, and sporting events have resumed.
But Kimberley Chiasson can’t go back. The 20-year-old fourth-year journalism student has cerebral palsy, uses a wheelchair, and needs assistance with personal-care activities, such as dressing and using the washroom. That’s why she went to Carleton in the first place: it offered her the physical accessibility and attendant care she needed to live on campus.
“Once I found Carleton, I was kind of dead set on that,” says Chiasson. “It was the only option that seemed like it would really fit.”
Carleton’s Attendant Services Program, founded in 1986, offers 24-hour attendant care to disabled students in residence (those who live off-campus and require care can receive services at the residence complex). Through ASP, disabled students get the chance to live independently and participate in campus life to a degree that wouldn’t otherwise be possible. Its employees are mostly fellow students, who receive on-the-job training while pursuing their own degrees. The program costs nothing for clients: the Ontario government funds it (those from other provinces or countries need to have a funding agreement between ASP and their respective governments).
The program shut down when the COVID-19 pandemic began. Its students, both at Carleton and at the satellite site located at Algonquin College, also in Ottawa, had to return home. “I was disheartened, but I understood,” says Sydney Weaver, 21, a fourth-year communications student at Carleton who has cerebral palsy. “The entire university was closed.”
When Carleton announced its residences would reopen for the fall term, many were excited to go back. The university’s vaccination mandate, they thought, would make things safer. But in the summer, after some students had already made plans to return, Carleton told them attendant services wouldn’t be offered this fall. The school says it is protecting the client and staff safety but some argue they should have the right to make their own decisions about risks and benefits.
The university has not indicated its threshold for safety: Is it a certain vaccination rate in the population? Is it case numbers dropping to a certain level? If so, what is that level? Either of these might be decent metrics. But the university did not respond to TVO.org’s questions as to which one it is using, if any.
I can’t pretend to be disinterested in this topic, because for me, too, attending Carleton seemed like my only chance at an independent life. Like Chiasson, I have cerebral palsy. I went to Carleton for a bachelor’s degree and then a master’s. I lived in residence and used attendant services for a total of nine years. I’m still friends with staff and clients I met. When I moved to Ottawa at 18, I had never bought my own groceries, paid my own rent, or managed my own schedule. I didn’t know how to use transit. In British Columbia, where I’m from, every university I’d considered attending had a clause in its residence contract that students must be “independent”: attendant-care users need not apply.
Without the program, I would have had a completely different life. I probably wouldn’t have pursued a career in journalism. It would have been difficult to find accessible housing that wasn’t with my parents, and I definitely wouldn’t have had the same friends.
Asked why the program has not yet reopened, a spokesperson for Carleton tells TVO.org via email that ASP “does not allow for safe distancing, thereby heightening the risks of COVID-19 for participants and employees” and that “the university has been in contact with all affected students to provide online learning assistance and information on additional community resources.” (Algonquin College, which contracts with Carleton to deliver the program at its residence, tells TVO.org that “when Carleton University suspended service delivery for their residences they suspended the program in the AC Residence as well.”)
Online classes, however, don’t work for everyone. Chiasson, for example, says she can’t take required courses in radio and TV. “Logistically, there wasn’t an obvious way to physically adapt my bedroom and living room to be an audio studio,” she says, adding that, if the program doesn’t return next semester, she’ll have to delay her graduation.
While students could access funding to hire their own attendants, they would require accessible housing to do so, and that’s in short supply in the city. “It’s fairly obvious that Ottawa is in an accessible-housing crisis right now,” says Chiasson. As clients found out this summer that they wouldn’t be able to return, she says, there was no time to procure alternative accessible housing a process that can take years.
Emerson Bartel, 23, finished his accounting program during the shutdown. He has Duchenne muscular dystrophy, a progressive disease that weakens his muscles. Because of ASP, he could watch hockey games as late as he wanted and didn’t have to have a set bedtime, something that is common for attendant-care users, as most services are scheduled (the program schedules a few services, but, generally, they’re provided on an on-call basis). ASP gave Bartel a freedom he’d never had: “Before the program, I never thought I could live away from my parents.” Today, he’s on an accessible-housing wait-list, but he says the city told him it could take five years to find a place. In the meantime, he’s living at home with his parents in Arnprior.
Yugh Ajuha, who also has Duchenne muscular dystrophy, came to Algonquin from Iqualuit. During the shutdown, the 20-year-old office-administration student says, he ended up taking a break from school altogether because online delivery was hard on him and his family: “Being at home, I just didn’t have the energy or the support.” Despite this, he believes it would be too risky for ASP to return before “mostly everybody [in the community] is vaccinated.”
But while it’s true that many clients are at higher risk of severe outcomes from COVID-19, Chiasson and many of her fellow students want ASP operational again. “Others get to have the experience of living away from home while we just get to sit back and wait,” she says. She helps manage an Instagram account featuring clients and advocating for the program’s return. On September 22, she and other clients invited students to stage a walkout on campus (around 20 people participated, according to the Charlatan, Carleton’s student newspaper). The group plans to organize another later this year. “We thought the student body should be more aware of why they weren’t seeing us around campus this term,” Chiasson says.
The fact that ASP is closed does not mean that its students don’t face risk, she notes. While she waits to return to Ottawa, she’s living with her family in a rural area near Sudbury. Although she requires 24-hour care, agencies have allotted her only two hours per week from a personal-support worker. This means her parents need to help her with most of her daily-living activities. This has been extraordinarily difficult for the family, Chiasson says, as she’s still taking what courses she can virtually, and her parents have both returned to in-person work. She says she would need attendant care regardless of where she’s based, which increases her risk of exposure to COVID-19: “It’s still a risk that I have to live with. And that’s part of my reality.”
Alacia McIntosh has been an attendant with ASP: I was once her client, and she sometimes still provides care for me in emergencies. Even though she has long since graduated and gotten another job, she worked one day a week at Algonquin until the shutdown because she loves the program and its clients. She wants to return to the program whenever that becomes possible. I’ve known her for several years and consider her a friend, and I’ve rarely seen her get angry.
She’s angry now. “I was extremely upset that they allowed able-bodied students to return but not our clients,” she says. “I think it’s discriminatory. I think they’re segregating a group of people and preventing them from a fundamental human right, which is to access education.”
McIntosh says she would return “in a heartbeat” despite the COVID-19 risk. “I think it’s no different than me walking into a grocery store or gas station,” she says, adding that vaccination mandates reduce risk.
Some experts, too, question the school’s risk assessment. “It sounds like the university may not be thinking about the risks involved in not bringing back that program,” says Holly Witteman, a professor at Laval University whose research focuses on public-health communications and making health decisions with inherent risks. “Yes, the risk is higher, and that does need to be incorporated into these calculations. That being said, I think it’s tricky to impose a decision on people, to decide for them whether it’s safe or not. Many people who live with complicated health conditions are very used to making decisions about their own health, based on choices between two or more imperfect options.”
The independent-living movement, upon whose principles the Carleton program was founded, has a concept called “the dignity of risk.” It means that disabled people should have the right to decide which risks they are and are not willing to take. Those students who were allowed back to campus are being trusted to assume a level of risk, says Frank Smith, national coordinator for the National Educational Association of Disabled Students, which has an office at Carleton: “Every single day on campus, students, whether they have disabilities or not, are going to be faced with situations where they could be exposed to the virus in close quarters.”
And it’s not just disabled students’ academic careers that the shutdown jeopardizes, he says: their professional careers could be, too, because the lack of attendant services on campus could put students at further disadvantage when entering the labour market. “We know that disabled graduates have more difficulty finding employment,” he explains.
Witteman says that any decision-making should involve the people most affected by the outcomes: “If the university wanted to help disabled students make decisions that are right for them, they would involve them in decisions that affect the campus, because people who are at higher risk may have more insights about what policies might increase safety for everyone.”
But Chiasson says that clients were not consulted on the decision not to reopen the program: “No one asked clients what their home lives were like, whether they were safe at home.” (Carleton declined to comment as to whether it had consulted with clients. However, TVO.org spoke with a number of students, including Ajuha and Weaver, who also indicated they had not been consulted.)
Carleton has stated that “we hope to resume ASP in January 2022, pending health and safety requirements,” and the university indicates on its website that it is accepting applications for the winter term. But, Smith wonders, “Can we really say the risk is going to be any less in January than it is in September?” adding that, “it provides false hope, potentially, for the university to say they’re thinking about reopening in the winter.”
Smith says the school has a well-deserved reputation for being a leader in accessibility and inclusion. “Carleton will say, ‘We’re the most accessible university in Canada.’ But that reputation is connected to the Attendant Services Program, and they’re falling down on this one,” he says.
That reputation is why Weaver chose to attend Carleton. But she says the school’s decision to shut down ASP has affected her deeply: “It’s changed the way I see myself. My disability has always been a part of me, but I never thought it would define my future in the way that it has.
“Before, I was a student first. Now, I may have equal access to education, but I don’t have equal quality of education.”
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Sarah Trick is an assistant editor at TVO.org.