Home care and support group are keeping Michal Kaliszan from turning to MAID.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Michal and Yolanta Kalisan (past)

Meagan Gillmore wrote an excellent article that was published by Canadian Affairs on May 14 on How home care and a support group are keeping Ontarian resident Michal Kaliszan from turning to MAID.

The story about Kaliszan is excellent since it explains why many people with disabilities are dying by euthanasia (MAiD) in Canada under the Track 2 approval system.

When Canada expanded euthanasia to people who are not dying, it created a two track system for approving death. Track 1 allowed a same day death (no waiting period) for people whose "natural death was deemed to be reasonably foreseeable" (not defined). Track 2 allowed a 90 day waiting period for people who had a "grievous and irremediable medical condition" (not defined) but whose natural death is not deemed to be reasonably foreseeable. Since most people with disabilities qualify to be killed under Track 2, therefore these people are being approved for death based on their disability but they are asking to be killed based on their personal circumstances.

Gillmore explains:

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.

It was difficult for Kaliszan to arrange for the support that he needed. Gillmore writes:

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.”

Gillmore explains the background behind Kaliszan's story. Gillmore also explains that without the support that he needed that Kaliszan would be forced to sit in his soiled diaper, which was disgusting. Gillmore writes:

“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.

Kaliszan sought out a referral for a MAiD (euthanasia) assessment on February 13, 2023. Based on Canadian law, he qualified under the Track 2 requirements. Gillmore wrote:

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 didn't want to die. He told Gillmore:

“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,”

“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.”

Kaliszan turned his attention to finding a solution. Gillmore states:

“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.

Kaliszan never applied for MAiD, but Gillmore explains that it is easier to apply for MAiD than to receive home care funding to live.

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.

Kaliszan has a solution to his needs but it was a group effort. Gillmore reports:

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 better if his needs were covered by a single program.

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.”

Thank you Michal for sharing hope for you and for others.