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Since March, Vicky Levack, 29, has ventured off the grounds of her home — a nursing home — only three times.
Levack went directly to the hospital from Arborstone Enhanced Care in Purcells Cove on each occasion, twice by ambulance to fix problems with her catheter and once by bus to get pain treatment on her legs.
Levack copes with spastic quadriplegia, a severe form of cerebral palsy where she’s unable to control the use of her body.
Since the COVID-19 public order came into force in March, she’s not been permitted to leave the nursing home premises other than for medical appointments. In the last five weeks, she's had only two visitors mainly due to strict visitor restrictions at long-term care facilities.
She falls under the care of the Nova Scotia government and the only housing option available to her is a nursing home. This has been her home for the last nine years.
“My mental health is in the toilet."
- Vicky Levack
The United Nations Convention on the Rights of Persons with Disabilities states the equal right of all persons with disabilities is to live in the community with “access to a range of in-home, residential and other community support services."
Levack's been asking for community living options well before the pandemic but the answer is always the same: nothing is available.
“My mental health is in the toilet," said Levack. “I don’t even interact with the other residents because a lot of them are cognitively impaired. A lot of them are lovely but some of them are mean and aggressive."
After being attacked by residents a few years ago she was moved to a quieter floor. She feels safer now but Levack also longs for the things most of us take for granted.
"When I lived in Halifax I had job opportunities, if I needed to go to the hospital it was closer. I was around my friends, people my own age.
Now I mostly just stay in my room.”
Claire McNeil, a human rights lawyer in Halifax, said Levack’s living arrangement is unacceptable and a consequence of Nova Scotia’s ongoing “cookie-cutter" approach to housing those with serious intellectual and physical disabilities.
She also said Levack’s nursing home placement means she’s being doubly discriminated against on the basis of her disability, firstly because she's deprived of a fundamental human right to live in the community with necessary supports, but also the added COVID restrictions in place at long-term care homes in the province further diminishes her quality of life.
She has been put in a nursing home for the convenience of the government providers, said McNeil.
“Vicky’s a young woman, she has her life ahead of her and she wants to live her life to the fullest yet she’s been put in a situation that has been designed for people who are end of life,” said McNeil.
“To put any other 29-year-old person in a place like that would instantly be recognized as inhumane yet we allow that to happen by virtue of the fact that she has a disability and that should right away set off a warning signal to the government that it is unjust.”
The DSP options
Levack remains in an institution even though she appears to meet the criteria for supported community housing options under the Nova Scotia government's Disability Support Program (DSP). Though there is a long waitlist for community placements, one of the residential options is a small options home designed to accommodate three to four people with varying types of disability.
Eligibility requirements laid out in the DSP policy include a physical disability defined "as a long-term, chronic and persistent physical limitation that creates significant difficulties in functioning in two or more aspects of activities of daily living.”
The Department of Community Services administers DSP and for privacy reasons would not provide specific reasons for why Levack isn’t eligible for the program and the community living options it offers.
Community Services Minister Kelly Regan was not available to be interviewed.
“What 29-year-old wants to live in a nursing home if they don't have to?"
- Vicky Levack
But the department said an individual would be referred to the Department of Health if his or her support needs “are assessed as beyond what can safely be met in the Disability Support Program."
The specific criteria from which these decisions are made was not provided to The Chronicle Herald, but in an email the department said a number of factors are taken into account including someone’s "medical diagnosis, abilities to carry out activities of daily living, and their medical and behavioural support needs."
Levack has no other option but a nursing home.
“I’m told they can’t put me anywhere because my care needs are too high,” said Levack. “A place like this, a nursing home, is the only place I’m allowed to go where they can meet my needs.”
“What 29-year-old wants to live in a nursing home if they don’t have to?"
The Department of Health wouldn’t say how many disabled people below the age of 65 are residing in nursing homes now. But it said that 255 people had been moved out of the DSP program and into nursing homes since 2015. In 2014, 127 people under the age of 50 lived in a nursing home in Nova Scotia, according to numbers provided by the Department of Health then.
Levack’s situation reflects a reality for hundreds of disabled people institutionalized in Nova Scotia or waiting for appropriate community living options promised by the McNeil government in 2013.
That year the newly elected Liberal government committed to a 10-year plan to clear the DSP waitlist for community placement. The province pledged to significantly increase community-based supported living options and remove people from large congregate living institutions. But more than 1,600 people remain on the DSP housing waitlist and hundreds of people still live in outdates institutions called adult residential centres (ARCs) and regional rehabilitation centres (RRCs). Nursing homes are not included among these facilities.
“What's really at stake here is treating people with disabilities with proper respect and accordance with the equality guarantees of the Canadian Charter."
- Law professor Wayne Mackay
A March 2019 Nova Scotia Human Rights board of inquiry decision found the needless institutionalization of people with disabilities is harmful and discriminatory.
Since 2015, the DSP waitlist has increased to 1,660 from 1,100. Eight congregate care living institutions (ARSs and RRCs) for severely intellectual disabled people remain open with 476 residents. Only 186 of these people are on the waitlist for community placement. Community Services said its committed to closing those institutions but has not offered a timeline to reach that goal.
In this year’s budget the province earmarked $7.4 million to create 50 new community-based living placements. Community Services said only half of those people designated for placements are from the waitlist. The department said the remaining half are the ARC and RRC residents who would be given the option of moving into community homes next fiscal year.
That’s not good enough, said Wayne MacKay, a Dalhousie University law professor.
“What’s really at stake here is treating people with disabilities with proper respect and accordance with the equality guarantees of the Canadian Charter," said MacKay, an expert in human rights and constitutional law. "Those rights are constitutionally guaranteed.”
He said inevitably the cost of moving people into appropriate community housing would be high but the cost is no justification for delaying the process and limiting people’s rights.
"You can’t use dollars and cents as an excuse to treat people with less respect and proper treatment as mandated by the charter," said MacKay.