More Apologies are Needed

by Donna Kirk on December 10, 2013

 

On Monday December 9, 2013, Kathleen Wynne, Premier of Ontario, and two other party leaders, apologized to the former residents of Huronia Regional Centre. They apologized for the mistreatment and abuse thousands of them received at the hands of their caregivers.

Huronia Regional Centre opened in 1876 and was originally called Orillia Asylum for Idiots. At its peak in 1968, 2,600 people with developmental disabilities lived there.

To people who were forced to live at places like Huronia, more apologies are needed. Decades ago, any child deemed not perfect was seen as an embarrassment to families and was shunned by society. Professionals told parents their child would never develop and would be a burden to them. “Put them away”, they said, “and forget about them”.

Some parents ignored this callous ignorance and chose to love their child and see what happened. My in-laws were such parents. When their daughter was born in 1947 she was diagnosed with Mongolism.  Months later, my mother-in-law rode the streetcar across Toronto to take her toddler to see a specialist.

“This child is useless,” he said. “Put her in Huronia immediately.”

At that time, my father-in-law worked for the court system in Ontario. One of his jobs was conducting tours of Huronia Regional Centre. He swore that no child of his would ever go there. And she never did. Under their advocacy, their daughter learned to read and write. They adored her. And, they set the standard for my husband and me.

Our first child was born in 1970. He suffered oxygen loss during birth and could neither suck nor swallow. The chief pediatrician at Sick Kid’s Hospital called him “a vegetable with a heartbeat” and advised us to institutionalize him immediately.

We brought our baby boy home when he was two months old. He could suck, swallow and hold his head up. He swam on national television when he was two years old. As an adult, he delivered newspapers and saved his money for a trip to Florida.

But many parents were devastated by the prognosis given to their child and had nowhere to turn for advice. Community living associations didn’t start springing up until the 1950’s and there were no supports for parents and their children. Thousands of children with developmental disabilities were systematically placed in institutions.

In 1987, the government of Ontario committed to closing its institutions. On March 31, 2009 the last one closed. By then, thousands of people had been relocated to homes in the community supported by community living associations. The funds used to finance the institutions were transferred to these associations.

But there was still little money available to families who had cared for their developmentally disabled child in their own homes. And, worse, there were, and still are, no plans for these family members who are in need of support because their parents are aging or have already passed on.

*In November 2012, in response to hundreds of complaints from families across the province about the lack of services, the Provincial Ombudsman of Ontario launched an investigation into developmental services. This report is expected in the spring of 2014.

Yet, despite media coverage, alarms being raised at the Ombudsman’s Office, and warnings about the toll years of chronic underfunding have taken on families and the developmental services sector, Ontarians with a developmental disability and their families see no reason to believe things will change.

Families anticipate the report will echo what they and service providers have seen saying for years:

  • Young men and women are being placed in nursing homes and long-term care centres because there is nowhere else to go,
  • Young adults are graduating from high school with no meaningful futures to look forward to,
  • Parents are quitting their jobs because they need to care for their adult son or daughter at home,
  • Loving but desperate parents are relinquishing care of their children in hospital emergency wards because they can no longer cope.
  • People with no families, “citizens of the world”, are in jails or shelters because they have fallen through the cracks.*[1]

On Monday, after that grand apology, I wonder if the party leaders crossed this item off their to-do lists and have now moved on.  “So sorry” are empty words without true awareness and new initiatives to validate them.

Do our elected officials know what is happening to people with disabilities in the province of Ontario in 2013?

Do they care?

 



[1] Jim Triantafilou, Executive Director, Brampton Caledon Community Living

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{ 5 comments… read them below or add one }

Michelle Sim December 11, 2013 at 10:09 am

Wow Donna…thank you once again for ‘saying it like it is!’ As Ian and I are now both past 65, our main concern for Paul is: What happens when we’re gone? He’s high functioning, but not independent enough to live protected in our society. I am LOADED with frustrations. An “I’m sorry” and “this is how we are changing to address this very real and growing problem” would have been a much better idea.
Often concerned,
Michelle
PS I’m speaking at a dinner in Ottawa this Sat night (on the gift that Paul is) and I will read a few lines from you blog.

Reply

Donna Kirk December 15, 2013 at 4:49 pm

Thanks Michele. Let me know how the speech goes. Yes, the only blessing we have is not having to worry about what will happen to Matthew when we die. The frustration, anger, and worry for parents with developmentally disabled adult kids in getting worse. Let’s hope the Ontario Omud’s report (due in 2014) will encourage the MCSS to take of their blinders and address these issues.

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Sherry Isaac December 13, 2013 at 10:03 am

Donna,

While every life carries its own frustrations, I have never had to face the trials of a parent with a challenged child. I admire your fight, can empathize with the parents who can no longer cope, and am awed at how you are able to write so concisely about such an intense emotional topic with clarity and precision yet still convey your passion. Hats off, my friend. My you be uplifted and triumphant in your battle.

Reply

Donna Kirk December 15, 2013 at 4:50 pm

Thanks, Sherry. We all have something we’re passionate about. Too bad passion doesn’t change the world faster…

Reply

Kelley December 13, 2013 at 11:03 am

Powerful, insightful and spot on column about the state of affairs in Ontario. Well done.

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