This is one story as part of the Voices of People with Disabilities during COVID19 Outbreak series
The government’s solution is allocating additional funds to institutions in violation of CRPD.
As reported by The Guardian on May 13, Quebec had turned into the seventh deadliest place in the world for coronavirus, where long-term residences for older people and persons with disabilities have faced the outbreak of COVID 19, but the government is not even mentioning persons with disabilities in its response to the pandemic. Institutionalization has been a recurrent practice in Canada and the COVID 19 crisis has made it very evident that the State needs to take a different approach. Older people with disabilities living in these kinds of places have been dying at disproportional rates.
In order to find out more about the situation of persons with disabilities living in institutions in Quebec, the International Disability Alliance interviewed Jonathan Marchand, a 43-year-old man with disabilities who has been institutionalized for 10 years in a long-term facility after he developed muscular atrophy. Jonathan is also a disability rights activist who has been fighting the Quebec government to receive the support that he requires at home and be released from the facility, with no success so far.
IDA contacted Jonathan after he appeared on national TV at CBC News. Jonathan was interviewed along with two healthcare workers about the situation in long-term facilities. When he was asked about the best way to address the crisis in residences, Jonathan expressly said that the only way was to shut down these institutions definitively and provide support at home. However, his voice was silenced by the two healthcare workers who, very surprised, rejected Jonathan’s statement and asserted that these institutions are needed and that the best answer is providing them with more funding.
In 2009, Jonathan had pneumonia and ended up in ICU. After his recovery, he acquired a disability (muscular atrophy) and he was told by the doctors that he was never going to be able to return home. The doctors also asked Jonathan if we would like to receive euthanasia, adding that the only other option left for him was to stay at a hospital for the rest of his life. He did not accept the euthanasia and that’s how he ended up in a long-term facility. “Persons with high support requirements are pressured into accepting euthanasia,” said Jonathan. “I have been pressured to end my life. It is well-known by the government that health workers push you into accepting assisted death”. Jonathan referred to a case in London, Ontario, where a man with disabilities released some audios to the press indicating how he was being pressured into accepting assisted death rather than working with him to provide the services he needs. He had also requested home support for a long time, but he was refused.
“Since the beginning of this process, I told the doctors that I wanted to go home. I applied for home support, but the government only authorizes a maximum of 55 hours per week, and I need 168. But the government refuses without even assessing which kind of support do you need. They refused my petition right at the beginning before it was even clear what kind of support I needed. The authorities then told me that a long-term care facility was my only option. And we needed to look for a facility that was willing to take me in because I need too much assistance. I have been stuck here since then.” Jonathan said. He has complained before different authorities without success. “Long-term facilities is where you are sent to die”.
The Covid-19 crisis made the situation of persons like Jonathan even more critical. The crisis in long-term residences was flagged after the media revealed that at the end of March, a long-term care facility (Herron residence) had been abandoned by the professional staff in the middle of an outbreak. By March 29, at the Herron residence in Quebec, there were only two employees taking care of more than 130 residents. The authorities only noticed this situation after some of the residents started arriving at the hospitals with clear signs of COVID 19. But when the hospitals tried to contact the center to inform them, no one would answer the phone. When the authorities arrived at the residence, they encountered no one in the building, and that many of the residents had not eaten or received anything to drink for at least three days. There were also two bodies from patients who have died in their beds at least two days before. Some patients were on the floor, as they have fallen, and others had diapers that hadn’t been changed for three or four days and excrement was covering their skin. After this situation was uncovered, the private residence was placed under trusteeship and taken by the government. According to the media, “records reveal chaos in the days before staff abandoned the Herron”. According to the media, by April 1st, more than 519 long-term facilities had reported coronavirus cases. “There are at least 14 facilities in the area where I live, and I know that many of them have cases of coronavirus”, Jonathan said.
Across Canada, it is estimated that between 70% and 82% of the deaths by COVID 19 have happened in long-term facilities, and many factors are contributing to this situation. The main reason is a large number of institutionalized people and the acceptance of this practice in the country. By 2018, 17.9 percent of Quebecers over 75 years-old were living in nursing homes and seniors’ residences compared with 5.5 percent in Ontario. And about eight percent of people over 65 in Quebec live in institutions. In Quebec, there are public and private long-term care facilities (in French, centre d'hébergement de soins de longue durée, CHSLD). As it was highlighted in the article Time to re-think seniors’ housing and long-term care in Canada, this province is “the capital of Canada’s senior housing business” where people pay between 3000CAD and 10,000 CAD per month at these places. Private institutions are also allowed to set their own rules, prior a governmental authorization to operate, which impacts the scrutiny of these facilities.
Even Quebec’s Premier Francois Legault, during a press conference, has recognized that Quebec has three times more seniors living in institutions, per capita, “than anywhere else in the world”. Legault called Quebecers to acknowledge that the current crisis is due to the decisions that we make as a society when we decide to not take care of our older relatives. But Legault has not even once addressed the needs of persons with disabilities during the pandemic and there are some realities that the Premier is ignoring: it is a State’s obligation to provide care for older people after a lifetime of paying taxes and contributing to the Quebec’s social security system. Likewise, not every person living in long-term care facilities are older people. There are also younger adults with disabilities institutionalized. There are also people living in institutions who do not have high support requirements. But the most important thing is that no one should be in institutions. Institutionalizing persons with disabilities, including older people, due to their impairments may constitute discrimination on the basis of disability.
“Around 5 adults with disabilities live in this facility. Everyone else is older people. Some of them have high support requirements but not all of them. If you take 5 minutes to talk to these people, you realize that most of them could easily live independently in their own homes, but social workers push people to be institutionalized. I remember meeting a guy that lived here who only needed 4 hours of support, but he was stuck here for 10 years” Jonathan commented. “This is a huge business. Now that many people at these facilities have died, those places will be filled again and this circle will never end”.
Systematic inequality is another big factor contributing to the situation in long-term facilities. When the outbreak started, healthcare workers in these institutions were making between $20 and $22 per hour in public facilities, and between $12 and $14 in private institutions. The poorest people, including immigrants and asylum seekers are the main labor force in this sector. Many of these workers have multiple jobs, such as supermarket employers during the week and caregivers during the weekends. After their shifts, they go back to overcrowded apartments shared between many people, in very hard conditions, which increases the chances of getting infected. Moreover, their immigration status does not allow them to access free healthcare and many of them have reported that the managers of the residences refused to provide them with Personal Protection Equipment (PPE).
Now, Prime Minister Trudeau has sent the military to long-term facilities in Canada, where they have reported residents being bullied, drugged, improperly fed, and in some cases left for hours and days in soiled bedding, plus cockroaches and flies present. Also, that caregivers provide services and support to non-infected patients with the same protective equipment that they had previously used when in contact with residents infected with COVID-19. The report acknowledged that caregivers were overwhelmed and burned out. In Quebec, Premier Legault has requested that 1000 officers from the Canadian Armed Forces remain in long-term facilities until September.
All over the media, doctors, healthcare workers, researchers, and politicians are talking about properly funding these centers. Even the Canadian Prime Minister talked about increasing the funding for them. “The government wants to put more money into these places. Authorities even want to build more of these centers”, said Jonathan. But from a disability rights perspective, that is not the answer. Under article 19 of the Convention on the Rights of Persons with Disabilities (CRPD), the government has the obligation of guaranteeing that persons with disabilities live independently, within the community, receiving the community-based support that they need.
The lack of alternatives to institutionalization and ableist approaches that consider persons with disabilities as individuals without agency aggravate the situation. This was reflected in the lack of information provided. On one hand, at the beginning of the crisis, Quebec’s Premier refused to publicly share information about which CHSLD centers had had COVID-19 outbreaks. And on the other hand, residents have not been informed of the situation nor how to prevent the disease: “Healthcare workers don’t want to talk about the COVID 19 situation, so there is no communication between the staff and the residents. We, the residents, haven’t received any information whatsoever about COVID-19”, Jonathan said.
Politicians and health experts are calling for appropriate funding for long-term care facilities. But no one, except persons with disabilities themselves, is proposing something that is in line with the CRPD: end institutionalization, close long-term facilities, and facilitate independent living in the community, that includes home-based support. Canada needs to conduct proper consultations with persons with disabilities and the organizations representing them, as article 33 of the CRPD mandates, to reach a viable solution.
The lack of awareness is another challenge that has slowed down the implementation of the CRPD in Canada. “I’ve seen many things getting done in other countries, but in Canada, persons with disabilities don’t even know about the CRPD here. No one talks about it”, said Jonathan. It is important to recall that when Canada ratified the CRPD, the State undertook the obligation of disseminating the content of the CRPD among the public and training public officials about it.
The lack of recognition and respect for the autonomy of persons with disabilities is another reality. On one hand, Canada still keeps a reservation to article 12 of the CRPD on the right to the legal capacity of persons with disabilities. While countries like Peru and Colombia are enacting legislations that forbid legal institutions that limit the legal capacity of persons with disabilities, such as guardianship, and work on establishing supported-decision-making schemes, Canada hasn’t even recognized that persons with disabilities have the right to be recognized as persons before the law on equal basis with others. This is reflected in the cultural approach that calls for more funding and building more residences, but also in the way the voice of persons with disabilities is not being heard. “All disability-related decisions should be guided by the CRPD, but not even OPDs or persons with disabilities know about it” Jonathan commented.
Canada has a long history of institutionalization, including residential schools to recolonize indigenous children in the past. But in the last three years, both the UN Committee on the Rights of Persons with Disabilities and the UN Special Rapporteur on Disability Rights, Catalina Devandas Aguilar, have expressed their concerns on the situation of persons living in institutions across Canada. There is also a class-action lawsuit that was launched in 2018 by a patient’s rights group on behalf of Quebec’s CHSLD patients challenging the understaffing and lack of funding at these places.
“The only reason I see valid to deprive individuals of their liberty is if they have committed a crime. Not because of an impairment”. Jonathan continued, “In Quebec we (persons with disabilities” are simply invisible. In the beginning, the law on assisted death wanted to also include persons with mental disabilities. The triage rules issued by the healthcare system will deny care for persons with disabilities, which I think is really discriminative”. Regarding the Triage, some OPDs collectively sent a letter to the PM Justin Trudeau to demand rights-based, non-discriminatory guidelines for provision of health care in this pandemic.
When asked about the facilities available and recreation opportunities in the residence, Jonathan said that it is basically impossible to go out and have some recreational activities because the government won’t provide the support residents require to leave the residence, even for few hours. “there is no such thing as reasonable accommodations in these places, you have to adapt to the center. The center won’t adapt to your needs. My life has been put in risk so many times in this facility because health workers don’t know anything about my needs” he added.
Finally, Jonathan challenged the assumption that maintaining institutions is more cost-effective than providing community-based supports. “It would be even cheaper for the government to provide home-based support, but decision-makers refuse to listen to us”, he expressed.
