Editorial Note: This post is by Franke James, Teresa’s sister.
The reaction in the US or UK is that things like this couldn’t happen here. Part of the reason no one can believe that treatment is being forced on people who don’t need it is that many of us have the experience of not being able to access treatment when we need it. This paradox is central to what is happening. We will explore this further in later posts.
My sister Teresa’s happy and adventurous life today is in stark contrast to two years ago when she was declared “incapable” and forced into an Ontario nursing home at age 49. Against her will. Against my father’s wishes. And despite the fact that I had offered in writing to take Teresa into my home.
But before I tell you about that tumultuous time, I want to share with you some of Teresa’s achievements since she came to live with me and my husband on December 1, 2013. (We now live in Vancouver.)
For the first time in her life, Teresa has a Canadian Passport. She has accompanied us on some very special trips. She’s danced in front of the White House in Washington, DC. She’s enjoyed sightseeing in New York City. She’s attended environmental conferences in Niagara Falls, Guelph, and Victoria. She’s had coffee with David Suzuki and shook his hand. She’s been hugged by MP and Green Party Leader, Elizabeth May. She’s sung “Girls Just Want to Have Fun!” on-stage at Best Buddies’ Karaoke events.
Teresa has tromped through the snow in Whistler and stood amongst the towering trees near China Beach. She’s taken scores of photos of the “big boats” in the Strait of Juan de Fuca and the Burrard Inlet, carefully recording the names of the ships. She’s currently taking dance classes with All Bodies Dance and making artworks at Gallery Gachet.
Teresa’s memory is so good she keeps our food shopping list in her head — and has an eye for a bargain. She is thrilled when she spots sale prices on food items we regularly buy. She has an orange Compass card and is learning to take the Skytrain. Teresa is really “living it up” and enjoying her life. As she should.
Contrast her happiness and ability today in April 2016, with her supposed ‘incapacity’ back in November 2013.
Declaring someone with Down syndrome incapable is frighteningly easy. With the stroke of a pen, Teresa’s human right to decide where she lives was taken away. The capacity assessment stripped Teresa of her right to choose where she lives. But the test should never have taken place. I can say that with certainty because we recently filed Freedom of Information requests. We discovered that the capacity test was unlawfully conducted. Documents from the Ontario Ministry of Health show that the Community Care Access Centre (CCAC) ignored Teresa’s directions in her 1995 Power of Attorney document. The POA clearly stated that only Teresa’s own doctor could conduct a capacity test (or a doctor chosen by her POA, who was my father at that time).
Everything snowballed from that unlawful capacity test. There was a split in the family about the care for my 91-year old father and Teresa, who lived with him at the time. My father expected that one of us would take Teresa, but the ones in charge had other plans. He told the CCAC that he would sue if they tried to put Teresa in long-term care. By then the CCAC had already done the capacity test without my father’s knowledge (and in direct violation of Teresa’s directions in her 1995 POA) and the road was paved for Teresa to be put into long-term care. The mistakes were then compounded again and again.
During the capacity assessment, the CCAC did not attempt to verify with an objective third party whether Teresa was telling the truth about her abilities. They just didn’t believe her and assumed incapacity. Teresa’s health records show that her own statements of independence (“I can shower myself. I can dress myself”) were not believed and were instead used against her bizarrely as evidence of “cognitive decline”.
After Teresa was found “incapable”, she was forced against her will into a nursing home. She did not want to be there. The nursing home staff recorded that she was unhappy, crying and could not sleep.
I will never forget seeing Teresa in the Toronto nursing home in November 2013. She was sitting on a single-bed, with a thin sheet hanging between her and a roommate who could not walk, talk or feed herself. I was shocked at the cruelty of it all. Teresa was surrounded by people whose next stop was the grave. She was being robbed of her future and she had no way to fight back. It broke my heart.
Four days later, she was rescued by my 91-year old father who was “adamant” he did not want his daughter living in a nursing home. (And Teresa herself did not want to be there.) But then, on December 4th, the nursing home called the police, in a shockingly callous and brutal effort to force her back. Fortunately the police interviewed Teresa and respected her wishes to live with me and my husband.
How did this injustice happen — and why has no one apologized to Teresa?
Teresa’s health records show that the crisis list was manipulated to get her to the very top, and placed in the nursing home. Her profile contained false information which made her appear to need 24/7 care. In January 2014, I made a presentation with Teresa, to the MPP’s on the Ontario Government’s Select Committee: Teresa’s story: Crisis, Capacity and Courage. Christine Elliott, Vice-Chair (and soon to be Patient Ombudsman in Ontario) described Teresa’s story as “truly shocking”. And it truly is.
But even more shocking is that Teresa is not alone in being placed in long-term care. She is the tip of the iceberg. Two years ago, CBC Radio reported that 5,338 developmentally disabled people under 65 were put in Ontario long term care homes between 2008-2012. The Ontario Select Committee stated in their July 2014 report that, “Long-term care homes are pressured to accommodate young and middle-aged people with developmental disabilities without any medical need for this type of care or any training to support this group of clients.”
Ryan Walker, a developmental service worker, testified to the Ontario Select Committee. On January 20, 2014, Walker said,
“We have people with developmental disabilities being placed in psychiatric and long-term-care facilities. They are being placed there either just to get a placement or just to receive care. If I were to put this to a metaphor, it would be like going to your auto mechanic to file your taxes. It’s just not right. You’re not going to get any good work done with that, and it’s not going to help the situation at all either.”
You can help Teresa by signing her petition. It calls on the Ontario government to apologize to Teresa for violating her human rights and forcing her into a long-term care home. 25,000 people have signed already — but we need to double that number to show the government that this type of abuse of the developmentally disabled will not be swept under the rug. We will not be silent. It is up to us — the ones who are strong enough to speak up — to defend our loved ones who are defenceless. Because Human Rights Should Never Be Disabled. http://www.change.org/teresapocock