My brother-in-law, John,* says he wants to take me to Cuba. He swings his legs as he sits beside me, pulling his Blue Jays hat low over his eyes. I can see a shy smile underneath.
“Can we take the whole family?” I ask.
He doesn’t respond. I can’t tell if he’s thinking about it, or if his mind is already elsewhere. Just hours ago, we brought him home from the acute ward of a psychiatric hospital where he’d stayed for a month, with the realization that we can’t do this alone anymore. We need help. I think about John’s toes sliding into the sand, aware that this ongoing struggle isn’t just too much for the family, it’s too much for him, too. He crosses his arms, sighs heavily, and I feel the weight of it.
John is 52 years old. He is autistic, has a significant intellectual disability and bipolar disorder, type I. His daily functioning is deteriorating, and with COVID-19 lockdowns and the absence of John’s publicly funded day program which he attended during the week, he slid into a manic episode that my family couldn’t help him through. The program gave John time out of the house, socializing with others, and kept him engaged with activities. Now that is gone.
John has always lived at home with my mother-in-law, who is well into her seventies. For over a year, my husband has assumed the role of part-time support worker to give her the respite she needs. My sister-in-law manages appointments, finances and John’s regular team meetings that usually include his behavioural therapist, case workers, social workers, family members, and occasionally his psychiatrist.
Our situation is not immediately dire, but it’s getting there. My mother-in-law is frayed to the point of snapping, and her mental and physical health have suffered. My husband has spent the last few years fighting against a tidal wave that he can’t hold back: John’s worsening mental health, my mother-in-law’s exhaustion and depression, and a confusing system that seems to operate in knots of red tape. No amount of love can stop the fact that this is a family approaching crisis. On top of that, there is the very real fear that when my mother-in-law is no longer able to look after John, where will he go?
John is now on the list for a group home, but that could take up to 25 years, despite being placed on an urgent list. We don’t have 25 years. In a perfect world where support isn’t a challenge, we would prefer to keep him in the home he grew up in, but this would require substantial funding to pay for round-the-clock support workers. To layer the issue, the guilt my mother-in-law feels is palpable: If he’s sent away, will John think we’ve abandoned him?
In Ontario, options are limited. Group homes are in demand because they allow far greater flexibility and freedom for their residents, and usually house no more than five or six residents with full-time staff. And the homes are just that, residential homes. Houses that have been purchased—usually by a private individual or an organization—for the express purpose of housing a small handful of disabled people. Families are free to visit and residents are free to come and go. Group homes often receive provincial funding, but not enough.
The other option, long-term care homes—either specifically for disabled individuals or the same ones that house the elderly—are vastly different, as COVID-19 has now exposed. Operated on institutional ideologies of the past, they represent institutionalization, regimented structures with little-to-no flexibility, and overworked staff. Some LTC facilities house upwards of 400 residents with an astronomical and unsustainable resident-to-staff ratio. Long-term care facilities can be both private and public, but all are regulated under Ontario legislation.
This is not what we want for John, but many families face this as being their only option. We need a long-term solution.
Sylvia Arsenault, who is a nurse practitioner, has experienced the challenges of institutionalization from both sides. Arsenault—who currently works as a nurse in a correctional facility—and her husband have become an integral part of 60-year-old David’s* life.
David was institutionalized when he was a child, long before Ontario officially shut down institutions for the disabled. As a result of this shutdown, a little over ten years ago, David was moved into a group home next door to Arsenault in a small community just outside of Peterborough, Ontario. Having worked in healthcare most of her life, Arsenault became well acquainted with the group home staff and residents over the years. Eventually, one of the workers approached Arsenault and her husband, asking if they’d take a role in David’s life as he had no family; taking him out on a regular basis and helping him integrate into the community a little more. For Arsenault, there was no question—they would do it.
According to Arsenault—based on what she says she has read in David's medical files—he had been isolated and neglected for most of his life. While institutionalized, he’d been violent and, as a result, heavily sedated. This was often the case for residents in Ontario’s now-closed institutions. Over the decade David has been in his group home, Arsenault says the real man has shown through. Now, she takes him grocery shopping, out to dinner, and she laughs when she talks about his humour.
But even one day in an institution is a day too long.
Historically, governments have relied on large congregate settings to house disabled individuals, which is still an issue. “The government of Ontario is stuck in a very archaic system of social support,” says Dr. Madeline Burghardt. Burghardt holds a PhD in disability and institutionalization and is an instructor of disability studies at York and Western universities in southern Ontario. Burghardt has spent her career studying institutionalization in Canada, and the effects of long-term care on disabled individuals and their families, both historically and currently. These facilities that house senior and non-senior disabled individuals alike are built on the social, ideological and political framework of old institutions. They house large populations and keep strict regimentation that strips residents’ autonomy over even simple things like meal and snack times, bathing, visitors and activities. The biggest contributor to this atmosphere is systemic understaffing, a problem which has been brought to light during COVID-19. Burghardt has documented countless stories just like David’s, and the question always remains: if we know these long-term care facilities are harmful, why are they still open?
“The fact that there’s an institution to go to in the first place is problematic,” Burghardt says. She argues that the ideological threads from institutions of the past have carried through to long-term care facilities today. The undercurrent of valuing individuals in terms of productivity, and the belief that removal of disabled individuals from communities is in everyone’s best interest, created institutions that were overpacked and underfunded, and resident abuse was common. Despite the last institution for the intellectually disabled in Ontario, the Huronia Regional Centre, having closed in 2009, these massive congregate settings still exist today in long-term care homes, where facilities are woefully understaffed. In these stretched-thin facilities, the needs of the institution supersede those of the individual, and the cycle of neglect and abuse continues.
The problem is that unless a disaster like COVID-19 strikes, these conversations about improving access to community care and support never gain traction in the public sphere. Families like mine aren’t allowed the freedom to do what is best, and necessary, for their loved ones: full-time, in-home care with access to both mental and physical healthcare. But the staffing alone would run us into a cost of six figures. Provincial funding barely covers a fraction of this and very few can afford to pay out of pocket. For families who are financially struggling, this becomes a stark class issue: those who can afford the steep cost for in-home care get the best. Those who can’t have no other option but long-term care homes. They can’t wait 25 years for a group home.
It sounds Dickensian, but it’s reality.
Addressing the fiscal cost of keeping institutions open is more than just front-end dollars, says Lisa Gretzky, an MPP who represents southwestern Ontario’s Windsor West riding. It’s accounting for the tangential and unacknowledged burden on the healthcare system when members of those families burn out. Gretzky, who is the Opposition critic for community and social services, has been working to improve living conditions, access to healthcare and support for individuals with disabilities and their families. Family members, particularly women, often sacrifice income to care for their disabled child through their adulthood, which puts a strain not just on the household, but the economy. And then there’s the cost that has no dollar value: emotional, physical and mental. I think of my mother-in-law and the struggle she’s had no choice but to shoulder, simply because she wants the best for her son.
But if governments start thinking long-term, money will be saved, Gretzky argues. Effective community support means a real home for these individuals near their families and entrenched in their communities. Appropriate and well-paid staffing is essential. It’s a collaborative effort, and one that should never exclude families or the wishes of the disabled.
This is the type of home that Patricia Falco* found for her 14-year-old son, Jack*—to an extent. The house is a quaint bungalow in her southern Ontario neighbourhood and is ideal for both Jack and his family. Falco says Jack—who’s now lived there for seven years—attends the same school as his younger brother, gets to see his family all the time, and is happy and thriving. It’s a far cry from when he lived at home with Falco, her husband and youngest son, where Falco struggled with high worker turnover, scheduling appointments and managing Jack’s extensive needs and round-the-clock care. It also, she says, impacted her younger son. Without proper support, it was exhausting and unsustainable for Jack to live at home with his family. Jack’s group home placement is a big relief. “We get to go back to being a family,” she says, “and [Jack] gets to go back to being a kid.”
But it’s not all sunny. Because of Jack’s young age, Falco often receives criticism from both the abled and disabled communities, asking how a mother could leave her child at a group home. To add to that, she says base funding for the group home and other needs hasn’t been increased in ten years. This means group home workers don’t receive appropriate base salary increases.
Now with COVID-19, group and long-term care homes have been exposed to both the systemic issues due to funding and staffing, and the government’s inability to forecast for a worst case scenario.
Falco highlights just one of the many problems with supportive housing, such as Jack’s group home. They aren’t equipped to manage emergencies like lockdowns—to that end, Falco didn’t see him for nearly six months last year—and nor are they able to provide strategies for safe access for parents and their children.
The problem is, if Jack were home, Falco and her family would need much more extensive and efficient support—and this degree of support costs money.
The Ontario Caregiver Organization’s 2020 Spotlight Report highlights the desperate need for caregiver support. Caregivers, including family members, have significantly increased responsibility during the pandemic, 54 percent of whom say their duties—the same duties Falco had prior to Jack’s group home placement—have become difficult during COVID-19. With provincial cutbacks, a higher cost burden is being placed on family caregivers and access to healthcare is strained.
“Caregivers are feeling stretched and challenged around the amount of hours that they’re putting into their caregiving role,” Amy Coupal, CEO of The Ontario Caregiver Organization, says. The OCO is a non-profit organization funded by the Government of Ontario that works to support 3.3 million caregivers across Ontario.
Given the unmanageable waitlist for group homes, it’s no surprise that families simply have no other choice but to put their disabled loved one in long-term care; the 25-year-long waitlist for group homes will leave some aging disabled individuals with no caregivers whatsoever. This is a situation that MPP Gretzky sees repeatedly. She speaks with aging parents with aging kids who need a lot of care, and describes the terror parents feel wondering what will happen to their children when they can no longer care for them.
“Many of them are breaking down thinking of the idea of having to make that decision to put their now-adult child into a long-term care home,” Gretzky says. “But there’s no other option.”
There should be another option. This shouldn’t be a fiscal issue. It’s a care and compassion and decency issue, and it’s been a pervasive problem for far too long.
In the meantime, my family will continue to do what we need to for as long as we are able. We have to hope that this unsustainable situation will resolve and that John will remain safe and happy all his life. I know my mother-in-law feels the same grief and guilt that Patricia Falco feels. It’s a feeling that no mother should have to experience.
I hope this conversation will not just be one in reaction to a disaster such as the one currently unfolding with long-term care homes in the wake of COVID-19. I hope it will continue, until finally, disabled people like John won’t be seen simply as a financial issue, as a problem that is addressed in a budget, but will be seen as people who are loved and want to be with their families.
The only thing we can really do is hope. For John, and David, and for Jack.
*Names have been changed.
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