Intellectually disabled Canadians are dying in residential institutions: What’s happening & what can be done

Intellectually disabled Canadians are dying in residential institutions: What’s happening & what can be done

by Autistics for Autistics Ontario

This week Ontarians learned the shocking news that 37 out of 42 residents at Participation House, a residential institution for intellectually/developmentally disabled (IDD) Ontarians, have tested positive for COVID 19. At least 12 staff have also tested positive, and at least 80 staff stopped working. Participation House is now scrambling to find care workers, with the help of the Province.

One resident of Participation House, Patty Baird, who had Down Syndrome, became ill with COVID-19 last week. Her family had visited her on Monday and quickly saw how much Patty was suffering. “The agony — she was screaming in agony,” recalled Patty’s sister in law. “She was in so much pain.” It was only after Patty’s family reported this to staff at Participation House that the residential institution had her transferred to hospital, according to Global News. Patty died on Wednesday, April 15th. She is the second Participation House resident to die from the virus, preceded by 58-year-old resident, Martin Frogley.

In Ontario, 114 long-term care facilities are now dealing with COVID-19 outbreaks, including at least 11 dedicated institutional housing for intellectually and developmentally disabled (IDD) individuals. Nationally, more than 600 residential institutions are having COVID outbreaks.

But this is not just a provincial problem, it is national in scope. And it is not merely lack of pandemic preparedness that has led to the outbreaks, it is the very nature of segregated, congregate housing itself, with its transient workforce, lack of oversight, and structural deficits that lead to mass-illness outbreaks and a host of other medical, social and emotional-health risks for residents. And now, more deaths.

It didn’t have to be this way.

Residential institutions “the norm” for IDD Ontarians

In Ontario 9,600 people are in residential institutions, including 2,900 developmentally disabled adults (and some youth) who are in long-term care homes (LTC).

Long-term care homes are intended to be only for the elderly since the province closed down residential institutions a decade ago, but a lack of political will to make the real changes essential to de-institutionalization means that IDD people continue to be placed in seniors’ homes, hospitals or in other large segregated facilities.

“People get forced into them because of a lack of resources, then the government says they ‘chose’ the facility,” says Patricia Spindel, an expert in Community Health and Developmental Services.

Carl, a man who works in this sector but did not want his name used says: “Parents want independence for their children, a place to live after they [the parents] die. And institutional living is often presented to them as the only choice.”

In response to pressure in 2015, Ontario’s Minister of Health committed $810 million to relocate some people out of large institutions. However, it only moved them into what Carl calls “small i institutions,” group homes and other segregated residences. “It’s like the government doesn’t understand other options than group homes, which are really just a smaller-scale version of the institution,” he says. “[Residents] still room together and don’t choose their roommate. The fridges are locked. They can’t come and go. They can’t make any choices. They don’t have freedom.”

Research shows that integrated housing–where IDD people live in their own apartments in their community, instead of segregated institutions–leads to better quality of life and outcomes. Yet less than 20% of federal housing funds for IDD people is allocated to programs for integrated housing. In addition, the Government of Canada has not acknowledged that IDD people should have a say in their personal support workers, a right that is acknowledged for people with other disabilities.

“The disability rights movement has had successes, but in Canada very few of those successes have been for people with intellectual or developmental disabilities,” says Anne Borden King of A4A.

Institutions and group homes: Unregulated, uninspected

Right now, more than 600 LTC homes have reported COVID outbreaks–a number that is growing–and there is also an increase in smaller group home outbreaks. Factors cited include a lack of oversight and inspection of the facilities, and no uniform standards of care to adequately prevent the spread of illness.

A shocking report by the CBC found that last year, only 9 out of 626 homes in Ontario actually received resident quality inspections (RQIs), an essential safeguard in the form of unannounced inspections and follow up.

“The Ontario homes that have had multiple deaths from COVID-19 were not among the few that had resident quality inspections last year” reports the CBC.

There are no figures for smaller group homes, where there is no governmental database for collecting information about deaths, injury or even crime. Jennifer, who works in the independent living sector and spoke on the condition of anonymity says, “I think a big part of this story is that COVID is helping us understand that we don’t know much about these ‘mini institutions’ or who is in them or who runs them.”

When it comes to group homes “it’s a wild west,” says King. “When we drafted reports to the provincial and federal governments last year, we asked experts to show us the universal guidelines for vetting staff, for inspections… but there were no such guidelines. A lot of these places are privately run, even as they use public funds. And there is no broad oversight.”

Because each home or provider has their own policy, there are also no uniform protocols for disease control during the COVID crisis. Some homes have ended visitation and canceled event or taken other action, but few have plans in place for preventing the spread of COVID or what to do when someone gets sick. This has led many to speculate that the unfolding disaster in LTCs could have been prevented with better preparedness.

Health and safety risks go beyond COVID as well. King cited A4A’s reports to the United Nations Health rapporteur and to the Province of Ontario which reported incidents in Ontario group homes where staff were not vetted, including one staffer who had been previously convicted of assault on a resident only to be rehired and commit another assault against a resident, for which he is serving jail time. In another institution, a staffer stalked and attempted to murder a resident in the woods on its grounds, for which he is now serving 20 years in prison. This institution, which is currently the subject of a class action lawsuit on human rights grounds, continues to house youth under the age of 18.

“We’re making a mistake if we think that bringing in more staff is going to stop the crisis with our institutions,” says King. “It’s like putting a Band-Aid on a gushing wound.”

“No priority for integrated housing”

The shameful fact is, 10 years after most provinces and territories officially closed their large residential institutions for IDD people, Canada never really began the true transition for its IDD residents—from institutional living to integrated lives within the community.

In Canada today, more than 80% of federal housing dollars for housing for IDD Canadians still goes towards segregated housing units, including the building of new residential institutions. Social workers often present segregated housing to people and their families as the “best” approach for the future. But in reality, it’s not the best opportunity—it is simply the only one.

Contrast this to the US, where from 1977 to 2010, the proportion of IDD Americans in large residential institutions fell from 35.8% to 4.2%. While the US has not had a perfect trajectory for this transition, Canada’s has been at nearly a standstill, with no known government commitment to it.

In the US, a federally-funded program entitled “Money Follows the Person” (which allows for money currently being paid to institutions to follow people into the community) has been funded through November 2020. So far it has helped 91,000 people move out of institutions and into their own homes. An additional 800,000+ Americans are now living in community settings with home- and community-based services and supports.

Money Follows the Person is also giving states another tool to move people with disabilities out of dangerous congregate settings during the COVID crisis.

Why hasn’t any of this happened here in Canada?

Evidence for integrated housing

Integrated housing for IDD people means that a person has their own home, such as cohabiting or living solo with supports in an apartment building that houses both non-disabled and disabled residents. Studies show this approach leads to better quality of life and life outcomes. With this model, people can choose their own roommates, pick their own personal support staff and make supported decisions about their daily life.

According to the Autistic Self-Advocacy Network, which studied both segregated (institution/group home) and integrated housing in the US: “Research shows that this trend has resulted in better life outcomes for people with disabilities. Compared with people who live in larger congregate settings or institutions, people with disabilities who live in small community settings have a higher overall quality of life, more friends, more opportunities to make choices about their lives, more opportunities to develop and maintain skills, and higher satisfaction with their living arrangements.”

So why hasn’t Canada begun to move away from segregated housing to the kind of integration that’s taken root outside of Canada? “I think the answer may be pretty simple,” says King. “It may be that they’re funding projects for segregated houses because that’s just the way they’ve always done things. And in some ways, confronting that dynamic is the biggest challenge of all.”

Looking ahead

As the week comes to an end, former Ontario MP Jane Philpott has issued an appeal for RNs and other health providers to step in to provide support at Participation House:

“We need great RNs, RPNs and PSWs immediately,” she tweeted. “In the last 4 days as I get to know the residents of Participation House they have captured my heart. We can’t let them down. They are beautiful people who need the very best of care at this challenging time.”

Participation House–and so many other institutions like it–are in a long-term crisis. It would be a mistake to think that once we bring more service workers in for now, we’ve solved the health and safety problem at residential institutions. The fact is, IDD Canadians should not be living in residential institutions and nursing homes at all. Canada needs to catch up with best practices and better ways. Integrated housing is possible and the Money Follows the Person model works.

Our government can’t just keep promising to “fix” residential institutions for IDD people: it needs to abolish them.

What should the federal government do?

The Government of Canada should commit to a total reform of its policy on housing for intellectually and developmentally disabled people.

This reform should be driven by experts in integrated housing, in partnership with self-advocacy organizations and based on the Money Follows the Person model.

This change can not be achieved if our government merely engages the same nonprofit entities it always does, those who profit from segregated housing. The Government of Canada needs to engage new ideas, new groups and new people to make these changes possible.

What can we all do now?

There are things that we can all do to help, right now.

Please contact your federal Member of Parliament by phone or mail. (Do not email: some MPs do not read constituent emails).
If you’re comfortable speaking on the phone, ask for a phone meeting with them or an aide.
-Tell them that you are concerned about COVID and other diseases spreading in institutions and group homes for IDD people.
-Ask why the government still spends 80% of its IDD housing funds on segregated housing for intellectually disabled people, instead of integrated housing (having one’s own home in the community near friends and family).
-Tell them that studies show integrated housing works best for intellectually/developmentally disabled people. Explain that it is being done in the US and Europe.
-Please share our contact information with them.
-Please ask them to forward your concerns to the Ministry of Disability