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 my husband and me 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 has 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” that 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 my husband and me.
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 MPPs 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, “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 Be For Everyone. http://www.change.org/teresapocock
This is quite shocking because here in the UK it seems to be the other way round people are complaining they can’t get treatment. In the NHS it’s normally about lack of placements or funding. It seems to be all about money at the end of the day. Just wondering if they are looking for patients to fill their beds to keep their institutes running. It’s the only thing that comes to my mind having read the story about Teresa above. It’s terrible to be kidnapped by the authority’s like this, there should be an investigation into it.
I am Irish so know very little about America. I am wondering if the homes are privately run in America and in order to be profitable need to be at full capacity. It has happened with privately run prisons in America, where people are imprisoned for minor crimes for long sentences to keep them at full capacity. Indeed a judge has been found guilty of accepting bribes from a private prison to convict people and have them placed in their institution. The willingness of those making the assessment on Theresa’s capabilities to break the law around the POA needs to be investigated by authorities.
As Anne-Marie says, this story is absolutely shocking. Here is a family who have done their very best for all members of their immediate family by :- the father making arrangements for a sibling to care for Teresa when he became incapable of carrying on with the task and Franke and her husband willingly taking on the carers’ role when the time was right. How dare the Authorities come along and undo their well-thought – through plans!
As Anne-Marie also says, this is a new scenario as far as we in the UK are concerned. I guess it’s only because it doesn’t suit our authorities here – yet!
Think of the number of young children removed from their families, here in the UK, due to unfounded concerns regarding their parents. Some were adopted by unsuspecting families who had, undoubtedly, been told that the child’s case was “sound”. What a situation must arise when courts find such cases untrue. Does the child return to its birth family, devastating its adoptive family, or stay with the adoptive family and cause a life of unimaginable pain for the birth parents?
Either way, great pain is caused all because of the attitude of those in authority who should know better.
I was so glad to read that Teresa’s story ended happily – albeit without as much as a “sorry” from those in charge of the dire decisions.
The vulnerable are the ‘voiceless’.
This could happen to anyone.
If the vulnerable are so intoxicated with so many useless medicines, how on earth are they going to help themselves?
The system is in dire straits.
The people that allow this to happen need to have their conscience fully examined.
So many lies are told to the loved ones and you wonder why the current medical system has no integrity??????
Teresa and so many other people, who have unjustly had their rights taken away from them, certainly deserve an apology for what they have been through.
Their loved ones, also deserve some recognition and an apology for what the system has put them through.
Sadly, it takes decades and decades, to rectify a wrong doing.
Humanity should be restored with compassion, not a form of dysfunctional power that is way out of control.
People with developmental disabilities should be treated with the respect and dignity that any other human being is entitled to.
Has humanity got a long way to go!
Another case of “stuff you, this is our system” has caught my attention here in North Wales. Newspaper report of agitated, youngish, male, mental health patient who, last weekend, took a bus journey of roughly 20 miles to his local psychiatric unit to ask for support was told by staff to go to A&E. He went there and CCTV coverage shows him leaving A&E at 4am (think I’m right with the time) . He hasn’t been seen since. His family are obviously very concerned and are out searching for him.
At another nearby hospital recently a young, female, mental health patient went to A&E to request support for her feelings. After a 4 hour wait, she ventured to ask the Receptionist how much longer was she likely to have to wait only to be told “This is A&E not a mental health area – your wait will be as long as it takes”.
What do we take from these examples? – exactly the same as we do from Teresa’s story ( and thousands of others) that the patient is purely a ‘commodity’ and seen as another ‘nuisance’ by so many who have chosen to work in a system where compassion, in my eyes, should be the absolute top of a list of priorities in proving your competence for your role within that system.
Anne-Marie and Mary, I recall as a child how the medical system was genuine and focused on the needs of the individual.
I didn’t mind having the friendly doctor:
– examine my throat with a tongue depressor and light or
– have my ears checked with an otoscope or
– have my eyes examined with a opthalmoscope or
– have my lungs listened to with a stethoscope
I felt safe and comforted by their friendly, caring demeanour.
Now 2016, you are lucky to get your blood pressure checked depending on who you get!
What type of a doctor are you if you have one that tells you that you have no veins , arteries or nerves in your feet?
It makes you wonder if one is conversing with an alien or someone who is qualified?
I am not a doctor and I know that the plantar artery is the main branch of artery of the feet.
How can there be any human warmth, if money is put before the individual?
I agree with everything you both have so eloquently put forward.
The system is marginalizing a lot of people not just the disabled.
After all the suffering and mal treatment I have experienced with some professionals, I have learnt so much about what the system is all about : (
I know many don’t want to hear this but what if:
‘the pharmaceutical companies are manufacturing random flawed batches!’ Anyone, can experience what I went through. ANYONE! ~ very frightening thought : (
If one gets the help and ends up with a drug that works against them, who is there to be their advocate- absolutely no one!
I am worried about our health care system and I am very worried about the moral ethical behaviour of big pharma.
Why would anyone want to play Russian roulette with their lives?
We have to ask our self a simple question?
Are we safe when we ingest a medicine?
When it comes to medicines, I want to know wether the medicine I am taking is safe?
If something is going to benefit you, it is just plain common sense: SOMETHING SHOULD NOT HARM YOU!
If doctors don’t lobby governments and pharmaceutical companies, what chance do consumers have??????
Imagine if you did go to talk to someone and needed some help.
The unethical labels.
The lies that some professionals make up.
The list goes on and on and on……………………………..
I dread the thought of anyone’s journey.
It is a RXISK going to the doctors today.
Some professionals are exceptional and magnificent at what they do but, but, but …………I don’t trust big pharma!
in Alberta Canada there is a firestorm regarding the death of a child with meningitis. Her parents treated her with naturopathic remedies, and the child died. The parents were found guilty of not providing proper care of the child. The naturopath is being”investigated” by the government. What is your opinion?
Without having full details of this case, its hard to tell. There are clearly abuses on both sides. But we are pretty good at – over zealous at – prosecuting abuses by families. There is not the same zeal when it comes to deaths at the hands of the system. Calling for a way to handle system abuses is not a call to exonerate things that families might do.
When someone goes into hospital, from day one the notes record any change of tone in the patients voice or their relatives voices or demeanour and the data can be and is used to sustain a case against the relatives and patient. But imagine if patients were to keep track of things staff said and did, instances of possible punitive drugging, then you’d have a level playing field
The system response is that our staff are doing a heroic job under difficult circumstances – the implication is that all trouble comes from patients.
We’ve just had the front pages of all British newspapers and the headlines on radio and TV cover a tragedy at Hillsborough – where 96 Liverpool football fans lost their lives – twenty-seven years ago. The truth is only now coming to light and it is that there is pretty unequivocal evidence of a police cover-up that played on the natural inclination of neutral observers to figure the police are decent people doing a difficult job while a football crowd is one step removed from hooliganism. But in fact football fans and patients are no less decent people than police and mental health staff and to assume otherwise puts us on a slippy slope to abuse.
Healthcare staff can be wonderful. They are also at risk of thinking that because they have good-intentions everything they do is fine and if need be justifies an economy with the truth
This is a really troubling case … looks like there is no question two-year-old Ezekiel Stephan would be alive today if his parents had taken him to a doctor. They did call 911 when he stopped breathing, but by then it was way too late.
They were found guilty of “failure to provide the necessities of life for a child” for which the max sentence is five years. Few people think they will get anything like that … the court found they definitely loved their child, and did not consciously choose to risk his life rather than resort to conventional medicine. (It’s ironic: in the USA at least, parents who DO make that choice for religious reasons have more rights than those who simply make a big mistake! In a couple of states, lawmakers are actually trying to codify that right for religious objectors.)
I do think the naturopath should face sanctions. According to the CBC it is actually the College of Naturopaths, not the govt, that is investigating her. Good for them. Just like chiropractors (or medical doctors for that matter!) naturopaths have a duty not to deprive patients of outside care who seriously need it. Whether for reasons of “principle”, professional status or plain old-fashioned greed.
What is interesting is no media report that I have seen has given any account of the case for the defence. You can check out stand4truth.ca that may give you a better sense of the complexity of this case. It is not so clear cut as has been represented by the media.
For your information I worked as Social Activist , I raised my vice to defend women and children rights, and I can prove what I have done, I also raised my voice for the freedom of speech in the current turbulent situation in Afghanistan, as you are in the picture, for the last decade the security situation has been challenging and critical in all provinces of the country especially the provinces and areas I was regularly stuck on going fight between Taliban and Afghan troops on our way to the project sites in different districts and location.
During my career timeline, in addition to my direct daily communication and Traveling to different areas and district around the country, it caused that all my private detailed information must be shown as the point of contact for many purposes, especially, working with Afghan Youth Peace Council while I was traveling to most dangerous location and district such as Kama, Haska maena Shinwari, and shirzad.
I scare and worry about my family and my life, I cannot attend social gatherings such as weddings, and funerals, because there are gossips about me.