Ontario’s bureaucracies continue to fail the most vulnerable
NationalPost.com – FullComment
Oct 15, 2012. Matt Gurney
The story of Emilia Arthurs and her loving family seems tailor made to break hearts.
Ms. Arthurs is 21 years old. Diagnosed with severe developmental disabilities as a toddler, her mental capacity has remained frozen in time. She is physically developed and strong, but still an infant mentally. She poses a threat to her own safety, and can sometimes unintentionally endanger others. Ms. Arthurs has been on a waiting list for a bed in a specialized care facility for five years. During that time, her family has been caring for her.
But as of several weeks ago, they had to give her up. Ms. Arthurs’ father, Chris, has been helping his wife Wilma care for their daughter for years, even though he has been battling colon cancer. For Chris, the battle has not gone well. His cancer has spread and become terminal. He is believed to have mere months to live, and his physical strength is fading fast. With Chris now himself requiring care, Wilma has not been able to handle their daughter alone. In late September, she was forced to give her daughter over to a care facility near their hometown of Sarnia, Ont.
The facility is an appropriate venue for someone with the kinds of challenges Ms. Arthurs faces. It has specialized staff in sufficient quantity to deal with those poor souls among us whose strong bodies are controlled by broken minds, and there are many like her. Ms. Arthurs has had her conditions all her life; for many others, it can be sudden. Who among us hasn’t known someone forever changed by a head injury, or seen a relative transformed by the ravages of dementia. It’s a major problem in our healthcare system, and one that isn’t getting any better. And Ms. Arthurs’ case is proof of that.
While the facility is an appropriate venue, it does not have the capacity to take Ms. Arthurs in the long term. It is meant as a short-term facility that people pass through while moving to a more permanent arrangement. But there are no suitable options. There are literally thousands of people waiting for a bed in one of the few provincial facilities that can properly handle a patient in Ms. Arthurs’ condition, with little expectation that she’ll land a spot soon — indeed, having already waited for five years, it could be five years more.
The care home she is currently in has offered to keep Ms. Arthurs indefinitely, but would need funding to keep her there and support the staff required to care for her safely.
And the government has said no.
The Ministry of Community and Social Services is responsible for the care of Ontarians in states similar to Ms. Arthurs. They won’t provide the resources to fund her continued care at the respite home where she is currently being looked after. The province is willing to care for Ms. Arthurs, but in a hospital or nursing home. The money to do that exists because those funds come from the Ministry of Health. There’s room in that budget. Just not the other one. Unless something changes, and fast, Ms. Arthurs will almost certainly be transferred to either a hospital or a nursing home.
Neither option is acceptable. Ms. Arthurs does not belong in a hospital, where resources must be properly directed to the care of those who require medical attention. And nursing homes do not have the staff, equipment or policies required to provide proper care for Ms. Arthurs, where she could pose a threat to other residents due to her strength. (Ontario should be mindful of the sad case of Winnipeg’s Joe McLeod, an occasionally violent Alzheimer’s victim who was improperly sent to a nursing facility instead of a specialized care ward, where he killed another resident in a dementia-driven rage.)
Clearly, a hospital is inefficient, and a nursing home, potentially dangerous. And yet the way Ontario has structured its care services, that’s the only way forward.
This is absurd. If Ontario can afford to put Ms. Arthurs in the wrong facility, it surely can afford to keep her in the right one. Bureaucratic silos and institutional fiefdoms must not be allowed to deny patients and families the care they need.
As Ontario’s population ages, dementia cases that produce situations very similar to Ms. Arthurs will only become more frequent. Ontario needs to solve this problem, and has less time than it might think.
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