KJIPUKTUK (Halifax) – Imagine being 28-years-old and not being able to decide what you are going to eat for dinner—or breakfast or lunch.
Imagine not being able to take a bath when you need to.
Imagine having to ask someone if you can go to the toilet.
Imagine having to live with people who scare or threaten you.
Imagine living down a hallway from someone who sexually assaulted you, and you are told not to make a fuss.
All this can and does happen to people with severe physical disabilities who must live in nursing homes in Nova Scotia.
Nova Scotia does not normally provide access to small options homes (or group homes) for people with severe physical disabilities. Indeed, of the more than 200 small options or group homes across the province, few if any serve this group. Instead, the homes tend to cater to people labelled as living with intellectual disabilities or mental health conditions. People with severe physical disabilities have been all but shut out of the conversation.
Nursing homes are usually the only homes available for many with severe physical disabilities. To put this in perspective, people barely out of their teens are often housed with people usually more than 50 years their senior who live with dementia, psycho-social illnesses, or mental illness, or age-related disabilities.
A recent report, Situation Critical, authored by the Ontario Health Coalition warns of the dangers that beset many residents of nursing homes – due to staff shortages and lack of supervision of residents. The report found that the homicide rate in long-term care was higher than the murder rate in the largest Canadian cities, higher than virtually anywhere in our society.
Without enough staff there is no one to monitor aggressive residents, and little to prevent violent outbursts from residents, pushing or hitting other residents or staff. The report argues that low staffing levels are a policy choice, not a necessity. It also notes that with low staffing levels there is no time for bathing or repositioning residents to prevent bedsores.
These conditions also exist in Nova Scotia nursing homes. For example, last March Chrissy Dunnington, aged 40, died of an infection caused by untreated bedsores. The staff at her Halifax nursing home did not notice or treat the bedsores in time to prevent what became a septic infection. While Dunnington did have a severe physical disability, spina bifida, her condition was not, in and of itself, a death sentence. However, she had deteriorated during the two years she lived in the nursing home. Before that, she had lived in a family-type home.
The fact that she was quite young, and previously well looked after — then died in nursing home care tells us all what can happen to anyone confined to a nursing home.
The Nova Scotia government appointed an expert panel to look into care in nursing homes. The panel’s recent report called for more staff and reinstating bursaries to attract people to qualify as continuing care assistants. However the province has been slow to adopt some of the panel’s recommendations.
Few people under age 60 choose to live in a nursing home.
But there is little choice for people with severe physical disabilities. They can live with parents who, as they age, may not have the strength or stamina to continue to look after their now adult children. There is some financial assistance from the province to help pay for care in the parents’ home or in the disabled person’s own home, but that does not pay for 24 hour a day care, which many with severe disabilities require. Now the only realistic option for people with severe disabilities is to live in a nursing home.
Article 19 of the UN Convention on the Rights of Persons with Disabilities recognises that people with disabilities have the right to live in the community, to choose their residence, and choose with whom to live. The convention also states community services and facilities must be available on an equal basis to persons with disabilities. Canada is a signatory to the Convention.
When will the McNeil government ensure that people with severe physical disabilities have access to community-based group home settings?
Judy Haiven is a writer and social activist.
There will be a public panel discussion on the urgent need for housing and supports for people with severe physical disabilities on Thursday February 28, at 7 PM, at the Central Library on Spring Garden Road.
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