When Michal Kaliszan turned 41 last month, he did not throw a party.
Kaliszan is introverted and prefers low-key celebrations: this year was not very different from his 40 previous birthdays. Except it was. It was his first birthday in a brand-new life of sorts, a life he did not think he would live to see.
He had, for a time, thought his 40th birthday would be his last.
“I guess I dodged a bullet,” he said in December, reflecting on how close death had seemed months earlier.
Kaliszan does not have a terminal illness and is not dying. Technically, one could argue he is not sick. Kaliszan has spinal muscular atrophy, a genetic condition that causes muscles to weaken over time. He was diagnosed as a baby; he has never known life without a disability.
He uses an electric wheelchair and needs 24-hour assistance for all daily living tasks: getting out of bed; showering; toileting; dressing; cooking; eating; house cleaning. A software developer, he works from home. Once someone helps put his hands on the keyboard, he can work independently.
He has cobbled together funding from different home-care programs in Ontario to give him round-the-clock home care.
Getting this care was not easy. In the fall of 2022, he tried to crowdfund the costs. He estimated then that home care cost about $800 a day and pegged his yearly caregiving costs at $285,100. Even with his job, he could not afford it on his own.
At the beginning of 2023, when he was 39, he was told the only place he could get constant care was in a long-term care facility. He did not want to live in what he calls a form of incarceration, so he was prepared to turn to medical assistance in dying.
Today, a medically assisted death is not in his plans.
“It feels amazing that I’ve been able to carry on this long,” he said in December. “I’m still in the community. I’m still living a dignified, meaningful life. Yes, there are challenges. There’s still stress and work to be done. But it’s far, far better than having made that final decision to carry through with MAID.”
This is the story of how he changed his mind.
Soiled diapers
Kaliszan never felt disabled until fall 2022 when, for the first time, he found himself without access to round-the-clock support.
Kaliszan’s parents moved to Canada from Poland shortly after he was diagnosed with spinal muscular atrophy as an infant. He was given 16 years to live — if he was lucky.
His parents did not want to leave their son’s success to luck. They moved to Canada, in part, to access better medical care. They settled in Cambridge, Ont. where his father worked in a factory; later his parents opened a Polish deli. They made their red-brick bungalow wheelchair accessible and bought wheelchair-accessible vehicles. They were always available to care for him.
“I could effectively participate in much the same way as able-bodied people could,” Kaliszan says, describing his upbringing.
Beginning at age 18, he was supported at home by workers from different home-care agencies. In 2020, he switched to Ontario’s direct funding program. It allows him to hire, train and schedule his own workers, so he is not reliant on the schedules and availability of home-care agencies. He received 41 hours of daytime support each week, a little less than six hours a day. His mother provided care overnight.
Direct Funding is a provincial ministry of health program that allows eligible people, 16 and older, to hire, train and schedule their own workers. The funding stays with the person regardless of where they move within Ontario.
The Centre for Independent Living Toronto (CILT) administers the program, with support from 10 other Independent Living centres across Ontario. The program is used by more than 900 people.
Everything changed on Oct. 3, 2022 when Kaliszan became an orphan.
His father Adam died of colon cancer in 2002. In 2007, his mother Jolanta was diagnosed with breast cancer. She fought it while caring for her son. But cancer returned in 2020, this time, in her lungs and brain. By August 2022, it was also in her pancreas, liver and soft tissues. She needed palliative care and died that October.
As her illness progressed, Kaliszan got a small sample of life without 24/7 support.
Kaliszan’s main concern is toileting: he needs help going to the bathroom. When his mother was too sick to help him, he sat at home in soiled diapers a few times until an agency worker came.
It was disgusting.
He began lobbying for more support when it became clear his mother would not recover.
In early 2023, he had a conversation with CILT about his concerns that he did not have as much support as he needed. According to Kaliszan, CILT staff suggested he wear diapers — or move into a long-term care facility if he wanted round-the-clock care.
Health-care research has shown that home care costs less than long-term care. “Public spending is lower if people receive advanced care services at home, or in retirement homes, than in long-term care,” Rosalie Wyonch, a policy analyst at the C.D. Howe Institute wrote in a recent report about health care for seniors.
In a statement to Canadian Affairs, the CILT said it cannot comment on individual cases because of privacy legislation. But the statement went on to say people who use direct funding often discuss with centre staff how to best use their available care hours.
“All suggestions are made with respect, patience and an understanding that our current system is not perfect but that we still need to work within its parameters,” the statement says.
“I don’t want to be sitting in a soiled diaper because that’s the status quo,” Kaliszan said in February 2023 — a few weeks after he had asked about applying for MAID.
‘Not dignified’
On Feb. 13, 2023, Kaliszan asked staff from the government organizations that co-ordinate home care for a referral for a MAID assessment. To qualify for MAID, two doctors or nurse practitioners must ensure an individual meets all the eligibility criteria listed in the Criminal Code.
Kaliszan was interested in what is often called Track 2 MAID. This is MAID for people who have an incurable illness, disease or disability and are experiencing suffering they consider intolerable — but whose deaths are not reasonably foreseeable. The Criminal Code says there must be a minimum of 90 days between the beginning of the first assessment that finds a person eligible and the medically assisted death.
So, if Kaliszan’s first assessment began in March, he could be dead in June.
But Kaliszan did not want to die.
“If my choices are between sitting in a soiled diaper, whether that means at home or in an institution, then I don’t think that’s the kind of life that I want to live,” he said while waiting for a response to his request.
“Even if I am in the comfort of my own home and able to work from home, I don’t think I’m going to be OK with sitting in a soiled diaper [and] trying to focus on work … It’s not realistic. It’s not dignified. … That’s what’s driving the MAID decision.”
His desperation grew each hour. His uncle had come from Poland just to help him, but his visa expired at the end of March.
Kaliszan spent about 20 hours a week, on top of his full-time job, contacting provincial and federal politicians, journalists, community organizations — anyone who might help him get more home care. Requests for more funding through Direct Funding could take 18 to 24 months to process, he was told.
“I still have a rather strong desire to live,” he said. “It’s just that I think, at some point, everyone has their breaking point.”
He was reaching his. Normally healthy, he was diagnosed with hypertension. He stopped sleeping. He could not relax. Time once spent reading or watching Netflix was better used finding alternatives to MAID.
Kaliszan had not previously thought about MAID much. After watching his mother’s cancer progress, he understood why MAID is legal in terminal cases, he says. But he did not think it was a good option for disabled people who are not dying.
“We’ve created a system where it’s just easier for disabled people to die than it is to keep on living,” he said.
The way he saw it, his future had been reduced to two options, both of which he feared: spending the rest of his life in soiled diapers — or becoming like the disabled people he had read about who turned to MAID because of insufficient home care. “I don’t want to become another statistic,” he said.
Too complicated
Kaliszan’s MAID assessment never happened. He got an email saying the MAID team was too busy to assess him. He could ask again in three months.
He never did.
But if he had, he thinks he would have been approved.
When Canada legalized MAID in 2016, the Criminal Code limited it to people whose deaths were considered “reasonably foreseeable,” a term that is not defined. The law says there does not need to be a medical prognosis about how long someone has to live.
In 2021, the law changed to allow MAID for people who met all other criteria but whose deaths were not reasonably foreseeable. This change outraged many disability rights and social groups, who warned it “sets apart people with disabilities and disabling conditions as the only Canadians to be offered assistance in dying when they are not actually nearing death.”
In 2022 — the latest year for which data are available — 463 people whose deaths were not reasonably foreseeable had MAID. In 2021, 223 did.
Numerous media accounts have described disabled Canadians seeking MAID for reasons such as poverty or inadequate housing. The Canadian Human Rights Commission has twice expressed concern about disabled Canadians seeking MAID because of social or financial concerns.
Medical professionals can consider non-medical factors when determining someone’s eligibility for MAID. Health Canada has produced a model practice standard to help doctors and nurses determine if patients meet the eligibility criteria in the Criminal Code. This includes determining if they are, in the words of the Criminal Code, in an “advanced state of irreversible decline in capability.”
Capability refers to a person’s ability to participate in activities that are meaningful to them, including activities related to their occupation, the model standard says. It does not refer to medical symptoms.
Provincial and territorial medical regulatory bodies, which govern medical professionals, have their own standards about MAID. The model standards must be read in conjunction with other regulatory standards, the model standard says. These bodies can use Health Canada’s standard for guidance, Health Canada’s website says.
Kaliszan did not consider MAID because of poverty. He has a full-time job. His financial security was a barrier — it meant a disability legal clinic could not help him find home care.
Finding information about MAID — and applying for it — is often easier than applying for home care.
For example, individuals that want to obtain home care through Ontario’s Family-Managed Home Care program must apply to one of the province’s 14 Home and Community Care Support Services organizations. The program — which is separate from the Direct Funding program Kaliszan has used since he was 18 — allows eligible individuals or their substitute decision makers to hire, train and schedule workers to provide medical services, therapy or help with household tasks.
The application process is long. It involves several meetings with Home and Community Care Support Services staff. The policy manual is 50 pages.
People “often do not understand it,” said Danielle Turpin, founder of the Home Care Workers Co-operative, whose members often provide home care through the program. She often helps clients complete the applications. Some give up because it is too complicated, she says.
She also helped a client apply for MAID. It was much easier. The application form was three pages; applicants needed to write only their name and check off five boxes confirming they meet eligibility criteria. (After an individual fills out a request for MAID, two independent nurses or doctors must ensure they meet the eligibility criteria.) The differences between the two processes “blew my mind,” said Turpin.
On principle, she supports MAID. But she never understood the process until she helped someone apply.
MAID applications are “way too simple,” she said, especially when compared with home-care applications.
“We can do some of these proactive, preventative things as a society to help people stay in their homes and get the care that they choose to get when they want it,” she said. But the way the system is set up means home care is not a viable option for many.
Lone voice
Kaliszan has a viable home-care option — for now.
He gets support from both Family-Managed Home Care and Direct Funding, in what he calls a blended system. Together, this provides almost 24/7 care. One worker lives in Kaliszan’s home and works evenings, mornings and every other weekend.
Finding this solution was a group effort.
When Kaliszan was looking for help getting home care, he contacted the Disability Justice Network of Ontario. The non-profit advocacy group connected him with Megan Linton, an Ottawa-based disability researcher and the organization’s policy lead. She found others who could help him, and soon a group of four was formed with the goal of keeping Kaliszan at home.
The group helped Kaliszan secure his current funding.
Kaliszan hires, trains, schedules and manages payroll for his staff. Turnover is common. By fall 2023, Kaliszan was getting used to the systems, but life was far from carefree.
“It’s not clear whether or not accessing multiple programs simultaneously is something that is going to be allowed on an ongoing basis,” he explained last October.
“You never know which day somebody might call up and say, ‘Remember that temporary agreement we agreed to? Well, we’ve changed our mind.’”
It would be simpler, he said, if a single program could cover all his needs. Each program has different requirements for what workers earn, what insurance is needed and what tasks workers can do.
His support group has provided constant help and encouragement. At first, Kaliszan was skeptical that the group could work. The idea sounded great in theory, but seemed a little utopian and impossible to make work practically. He thinks differently now.
“I would have been so much better off had I met the support group while Mom had been alive and healthier,” he said “[Fighting for support] alone, you’re just a lone voice in the night.”
Although Kaliszan’s life has improved, he is concerned about how close he came to dying.
He says he feels there was an insidious social pressure inducing him to consider MAID, although no one told him explicitly to apply for it.
Even with a full-time job and a home, he felt choosing death was easier than living. “I can only imagine how much stronger an inducement might be for somebody who doesn’t come from a position of privilege,” he said.
“I think in hindsight, I was giving up a little too soon,” he said about his request for a MAID assessment. At the time, he was exhausted, physically and emotionally — and grieving his mother’s death.
“There is hope,” he said. “It just requires perseverance and staying in the fight long enough.”
