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Nursing home outbreaks renew calls for community housing options for younger adults Moira Welsh
Toronto Star, Dec. 28, 2020
As the pandemic continues to kill elderly long-term-care residents, the virus is harming another vulnerable but overlooked group inside the same homes.
Thousands of people with developmental delays or serious mental health conditions live in Ontario nursing homes, many arriving under the age of 65 because there was nowhere else to go.
As of Nov. 30, 382 of the estimated 3,500 younger residents were infected with COVID-19, said the Ministry of Long-Term Care.
Forty-one died, the ministry said. Thirty of those who succumbed to the virus had a mental health condition such as bipolar disorder or schizophrenia and 11 had a developmental delay, such as Down syndrome.
It’s no secret that deep flaws in the nursing home system enabled COVID’s surge, killing more than 2,300 fragile Ontario seniors.
Ignored in demands for sweeping change is the fact that younger residents have been placed in long-term care instead of supported community housing where they could work, volunteer or spend time with people of all ages and abilities.
With COVID once again advancing on nursing homes, advocates say it has never been more urgent to get people with disabilities back into the community.
“We’ve made them more vulnerable than they ever would have been by placing them in those homes,” said Chris Beesley, CEO of Community Living Ontario, which represents associations that support people with intellectual delays.
“I’m not saying that living in your own apartment or home is going to guarantee you a better level of care,” Beesley said, “but we know from within our sector that, by virtue of the fact that you group hundreds of people together, good things are likely not to happen. In fact, the odds are hugely stacked against you.”
Like many provinces, Ontario has a history of institutionalizing people with intellectual delays or mental health conditions in large facilities dating back to the 1800s.
In the 1960s and ’70s, the push to close psychiatric institutions left many former residents struggling, some ending up on the street or in jail because there wasn’t enough subsidized housing or help from community groups.
Ontario’s last institution for people with intellectual delays closed in 2009.
Once called the “Orillia Asylum for Idiots,” the Huronia Regional Centre was chronically underfunded and rife with abuse and neglect.
Its closure led to a class-action lawsuit (followed by additional lawsuits against the province forfacilities that had already been closed) and a 2013 apology from Premier Kathleen Wynne. After more than 100 years of institutionalizing people with intellectual delays, Ontario promised supports for community living and inclusion.
Those promises didn’t last, said advocate Doug Cartan.
Supported by community living associations focused on promoting independence, many people stay in an apartment or with a family. Others may receive home care. Some associations own housing for people with developmental delays. But the wait lists are usually long.
Some are sent to nursing homes.
In Ontario, most long-term-care residents are well into their 80s with significant health problems, including cognitive decline.
Malaya (May) Ignacio arrived at the age of 58.
Now 65, Ignacio is developmentally delayed.She tested positive for the virus when her Ajax home, Chartwell Ballycliffe Long Term Care, had an outbreak last spring. Thirty-two people died.
“May got COVID in the early stage of the lockdown,” said her sister, Elsa Gamelo. “I was terrified, for many at her home had already died.
“As for May, she does not seem affected emotionally for she does not understand the situation,” Gamelo said.
“She was wondering why I cannot go inside. I only saw her from the parking lot to her third-floor room. When I got to see her in person the first time, she was so excited and you could see how much she missed me.”
Gamelo said her sister’s case was mild, with just a runny nose, and she recovered quickly. Ballycliffe is no longer in outbreak.
Chartwell said Ballycliffe is an old home that, at the time, had three or four residents per ward room.
“It went into outbreak early in the onset of the declared pandemic and well before the world had developed any understanding of the behaviour of this virus, in particular, the asymptomatic nature of the transmission of the virus,” said Chartwell spokesperson Sharon Ranalli.
Chartwell supports younger residents through an all-ages program that focuses on residents’ individual “hobbies, activities, education, employment and preferences, current and past, so that we can explore their full potential while living with us,” Ranalli said.
Wayne Aris has a developmental delay, and at the age of 44 he moved into privately owned Downsview Long Term Care and a few years later, a City of Toronto nursing home, spending six years in the homes.
His sister, Wendy Francis, is grateful she moved him out of Toronto’s Seven Oaks Long Term Care months before COVID-19 swept through, killing 41 residents.
Francis brought him home because older residents were aggressive toward her brother, she said.
“Staff don’t have the training for all the people who walk through their doors,” said Francis, who is chair of Family Councils Collaborative Alliance, a new support group for families with loved ones in long-term care.
Aris is 51 now and since August 2019 has lived with Francis in her Queen Street West home. He stays busy with virtual programs for people with intellectual delays. “I can hear him singing, in the other room,” she said.
Paul Raftis, general manager of seniors services and long-term care at the City of Toronto, said staff in the 10 city-run homes are trained to calm and emotionally connect with residents in their care.
Raftis said city homes work with local groups like Reena or Community Living Toronto, along with the ministry’s Behaviour Supports Ontario to create care plans that “best suit residents with special needs and/or challenging behaviours.”
Long-term-care homes are “not exclusively medical and nursing care institutions; they are social organizations where people who need care can live their lives to the fullest,” he said.
“Younger individuals may live many years in a (long-term-care) home,” he said. “Feeling ‘at home’ requires a sense of community, which is created from the collective involvement of everyone in the long-term-care home – residents and families, staff, volunteers and community members, who all contribute to the community of care.”
In Toronto’s city-operated homes, Raftis said there are 16 residents, most in their 50s and 60s, who have a developmental delay, such as Down syndrome, autism or epilepsy. None has tested positive for COVID, Raftis said.
Of the 112 residents age 65 and under with a mental health condition, 11have tested positive for COVID but none has died, he said.
In an email, Raftis said his office “cannot offer evidence that these residents (with a mental health condition) should be cared for in a different setting or health-care system.”
Of Ontario’s 1,032 nursing home residents with intellectual delays under the age of 65, more than half (550) are between the ages of 40 and 59, the Long-Term Care Ministry said. Another 72 are between 30 and 39. Eleven are younger than 29.
For advocates who spent decades fighting the abuse of people with developmental delays in large, crowded institutions, the reliance on nursing homes is an outrage.
But for some families, especially those in crisis with aging or dying parents who lived with their vulnerable child, long-term care is sometimes the only option.
“Because of lack of supports and attendant care services, in some cases persons with disabilities who would prefer to live in the community currently have to live in long-term-care homes,” said Laura Tamblyn Watts, CEO of national seniors advocacy group CanAge.
“This makes for an unsatisfactory lifestyle for many,” she said. “This isn’t about ageism – but if 90 per cent of your neighbours have dementia and almost all your neighbours are well into their 80s or 90s, this is not the open, diverse and engaging environment best suited for a younger person looking to be active and connected.”
The Ministry of Children, Community and Social Services (MCCSS) provides the funding for people with developmental delays.
The MCCSS told the Star it spent $2.68 billion in 2019-20 on developmental services, including $1.68 billion on “residential services and supports” for roughly 19,300 individuals with a developmental delay.
The ministry said it provided funding for 235 non-profit agencies that help individuals live in a range of housing options including an apartment with a spouse; a family home; a group home of three or more people; or a specialized home for those with “persistent high-risk behaviours.”
The Ministry of Health funds programs for people with mental health conditions and addictions, including roughly 14,200 “supportive housing” units in the community. These units include privately owned apartments, buildings dedicated to some supportive care or shared settings with communal dining rooms or washrooms. In 2020-21, the Ministry of Municipal Affairs and Housing budgeted $63 million for housing directed at several groups in need, including those with mental health conditions and addictions.
The Health Ministry said it is investing $3.8 billion over 10 years to support those with mental health and addiction challenges. It says this will help alleviate pressures in acute-care settings, “enabling patients to transition into the community with appropriate housing and supports.”
Exposure to COVID in long-term care is the final insult, say advocates, including Cartan, who spent decades working with people who have intellectual delays.
On Nov. 18, the Nova Scotia Court of Appeal livestreamed a case argued by the Disability Rights Coalition of Nova Scotia that noted COVID and discrimination.
Arguing against a decision by a board of inquiry of Nova Scotia’s human rights commission, lawyer Claire McNeil said people with disabilities face “segregation” by being placed in large facilities like nursing homes.
In Ontario, Cartan said he and others spent years trying to get the provincial government to close facilities like Huronia Regional Centre.
“Now we see that it is just reverting to the old institutional model that we had ceased,” Cartan said. “It’s such a tragic outcome. People had to choose this option (nursing homes) because there was nothing built for them in the community.”
With the second wave of the pandemic continuing its devastation of some nursing homes, infection control is the current focus of long-term care.
Homes are creating extra space by moving some residents out of long-term care, so those who are ill can be isolated. There will no longer be new admissions to ward rooms with three to four people, said Lisa Levin, CEO of Advantage Ontario.
Cartan said those plans to create space offer the opportunity to remove younger residents and find homes for them in their local community.
The Long-Term Care Ministry’s numbers for younger people with developmental delays in nursing homes come from the Continuing Care Reporting System, operated by the Canadian Institute of Health Information (CIHI), an independent organization. Its definition for a developmental delay includes Down syndrome; autism; cerebral palsy; or a developmental disability related to congenital rubella, congenital syphilis, maternal intoxication or a mechanical injury at birth.
Criticism over the reliance on nursing homes as housing isn’t new.
In 2017, the Ontario ombudsman’s office released a report denouncing the use of long-term care for younger people.
“We received 14complaints about adults with developmental disabilities – some quite young – who were left with nowhere to live but long-term-care homes,” the report said.
The ombudsman’s report recommended the Social Services Ministry work with local agencies to ensure that long-term care is a “last resort and that alternative solutions are vigorously pursued.”
As executive director of Hamilton’s Rygiel Supports for Community Living and the sister of a woman with Down syndrome, Donna Marcaccio has seen all sides of the housing struggle.
Marcaccio lives with her sister, who spent 30 years working for the local school board. As her abilities decreased in her 50s, Marcaccio said staff at the Local Health Integration Network pressured her to send her sister into long-term care.
Marcaccio refused. Her sister gets help from home care, although Marcaccio said it’s very difficult to have different workers arriving at her home, often not respecting personal space.
“To have somebody different every day drives you crazy. It’s very intrusive to have people in our home,” she said.
The decision to choose long-term care is usually complicated, she said.
Parents may have cared for a child with intellectual delays at home for decades, she said. An elderly father dies. The mother grows frail. She moves into a nursing home, bringing her adult child with her. Or, families panic and choose a nursing home because it seems like the most reliable option.
There’s a new problem too, Marcaccio said. She believes some professionals recommend nursing homes because they are too young to remember the emotional, decades-long fight against large facilities.
“They’re forgetting the history of institutionalization,” she said. “That is an issue in our sector now. Succession happens. People move on, and history gets forgotten.”
Often, it comes down to the simple fact that there’s “no room at the inn.” No spaces left in community housing.
Leaders at Community Living Toronto are part of a group that is pushing the provincial and federal governments to dedicate national housing strategy money for people with intellectual disabilities.
Some government money could pay for rent subsidies, said James Janeiro, the association’s director of community engagement and policy. Or, a percentage of units in a new development could be set aside for people with developmental delays.
Community Living Toronto’s CEO, Brad Saunders, said none of his young clients who are able to live independently are residents in long-term care.
For MalayaIgnacio, the first months in Ballycliffe were a struggle, said her sister, Elsa Gamelo.
Staff, she said, did not understand the needs of a person with a developmental delay who could not communicate her feelings. “They are more trained to deal with Alzheimer’s and dementia,” Gamelo said. “Geriatric illnesses, not something like my sister has with developmental behaviour.”
Changes in management helped, she said, and Gamelo now believes the home was the right decision for her sister. Ignacio prefers the company of quieter, older people, she said.
“I’m happy now,” Gamelo said, “especially when my sister expresses her feelings that she is happy. Before COVID, when I could bring her to my home for a visit, she always asked to go back to the nursing home.”
These days, Gamelo can’t stop thinking about the impact of the virus on all nursing homes.
“I’m afraid that outbreaks in homes that are short-staffed and have overworked staff (mean) they may have uncontrollable spreading,” she said.
What I’m most worried about is not being able to be with my sister in person, on Christmas.”