Teresa Pocock’s Story: Crisis, Capacity and Courage

Presentation to Ontario's Select Committee on Developmental Services Teresa’s story: Crisis, Capacity and Courage by her sister, Franke James
My sister, Teresa, is 49-years old and has Down Syndrome.
Teresa lived with my parents all her life. After my mother died in 1999, she moved with my father to a condo in North Toronto.
On November 27, 2013, Teresa was admitted to a Nursing Home (LTCH)
Teresa is an active, strong-willed and able-bodied adult.
Teresa should never have been admitted to a nursing home.
The admission was done against her wishes.
And against the wishes of her father
How could this happen?
The system did not protect Teresa...
In fact, the system worked against Teresa: 1. Teresa’s Human Rights were taken away; 2. Teresa’s Father lost his rights to protect his daughter; 3. The CCAC “Crisis List” was manipulated to put Teresa into LTCH
1. Teresa’s Human Rights were taken away
Whose voice would you listen to? Father: “I do not want Teresa in a nursing home.”. Teresa: “I want to stay in the condo.” Sibling: “Teresa should be placed in a nursing home.
September 4, 2013: CCAC assessed Teresa as Not Capable
September 4, 2013: CCAC used Teresa’s statements about her independence, “I shower myself”, “I dress myself” as evidence of cognitive decline
September 4, 2013: CCAC repeatedly ignored Teresa’s stated wishes
CCAC ignored their own observations about Teresa
2. Teresa’s Father lost his rights to protect his daughter.
September 3, 2013: TCCAC learned that Teresa’s Dad, the Senior POA, would oppose Teresa’s placement in LTCH
September 6, 2013: CCAC suggested that Teresa’s Dad, could have his rights removed
September 10, 2013: CCAC interviews Teresa’s Father and notes that he very clearly does NOT want Teresa put in LTCH
September 11, 2013: CCAC receives Revocation document removing Teresa’s Father’s Power of Attorney
September 11, 2013: CCAC did not question the revocation document, which is legally invalid because it was signed by the spouses of the Attorneys.
Invalid Revocation document
3. The CCAC “Crisis List” was manipulated to put Teresa at the top and into a LTCH
August 23, 2013: Teresa was falsely described as incapable of taking care of herself
October 5, 2013: Teresa was described as having “insidious” cognitive problems and decline
October 5, 2013: Teresa was reported to have had “wandering” events
November 21-22, 2013: Franke's offers to take Teresa into my home were not given to CCAC by Teresa’s SDM
On November 27, 2013: Teresa was admitted as a longterm placement to the Rekai Centre (Without her consent and without her father’s knowledge.)
November 28, 2013: CCAC was informed about my offer to take Teresa
On November 30, 2013: Teresa was discharged under the authority of my father, senior Power of Attorney
November 30, 2013: Franke spoke with Rekai Centre CEO, Mary Hoare, and told her about my offer to care for Teresa
November 30, 2013: CCAC suggested calling the police to return Teresa to Rekai Centre
November 30, 2013: Police arrived at Teresa’s home and took her father, against his wishes, to Sunnybrook Hospital (Form 2 Mental Health Act)
On December 1, 2013: Teresa moved into our home! And has lived with us ever since.
December 1, 2013: Rekai Centre was informed again about my offer to take Teresa
All of us are very concerned about Teresa...
December 4, 2013: Police with “Missing Person” report from the Rekai Centre came to take Teresa back to the Nursing Home
December 4, 2013: Fortunately, the police agreed that Teresa was safe and allowed her to stay with us.
January 6, 2014: CCAC, Surrey Place refuse to release Teresa’s medical records saying that Teresa’s Capacity is in question...
January 11, 2014: Teresa has new Capacity Assessment and is found to be Capable.
January 15, 2014: Teresa signs new Power of Attorney PC
January 18, 2014: Teresa gets her CCAC Records
Teresa is thriving! Teresa cooking lasagna at my home
Teresa is thriving! Teresa at Addus!
Teresa is thriving! Teresa is exuberant
Teresa is thriving! Teresa on the TTC
Teresa is thriving! Teresa with me on a winter adventure!
Recommendations: 1. Consent and Capacity law is easily abused. We need to change it.
Recommendations: 2. The “Crisis List” is broken. We need to fix it.
Recommendations: 3. Disabled and disadvantaged people are getting hurt in Ontario’s Care System. We need protection.

Teresa has launched a petition asking for a full public apology from the Rekai Center and the CCAC. Please sign her Petition at Change.org.

79 Comments on “Teresa Pocock’s Story: Crisis, Capacity and Courage

  1. omg what is this world becoming this is a disgrace treating people this way how would they feel if it was one of their family prob wouldn’t happen to them

    • well. that’s kind of the problem. two of the family were actively involved in causing this to happen.

      that’s what happens when people only care about themselves

    • I drove a transit bus for and I use the word loosely,disabled people. I have met many people of all ages with downs syndrome. I can say with absolute honesty, I have never met such kind, happy go lucky people who are perhaps more competent than many others. I wish this little lady and all who have downs syndrome the very best in their, what should be, happy lives. May God bless you all.

  2. The UK has a mental capacity act, and a code of conduct, but its so widely abused for the convenience of staff, and to save money, that no one is safe. In fact many are worse off.
    There was a recent House of Lords Inquiry into what was going wrong with the MCA …bit long winded, but you might be interested in reading the transcripts, as there were representations from various Human Rights bodies, judges etc which point out why the law is flawed and unfair and open to abuse. There may be subtle differences in Canada, but its worth a read through, in case anyone tries to suggest ‘This law and code of conduct works in the UK so we should have it in Canada’ to you!

    http://www.parliament.uk/business/committees/committees-a-z/lords-select/mental-capacity-act-2005/news/mca-press-release—13-march-2014/

    We have had people put in jail for doing what your Father did (ie taking a member of their family out of substandard or unsuitable care environments they’d been put into on the basis of fake ‘competency’ tests)! And by secret courts too (which were invented for terrorist trials only to begin with!). I think any ‘medical questioning’ that has the potential to take away your freedom and liberty should have to be a) optional, b) tape recorded or videoed and c) have a solicitor present with you, just like they have to do with a Police interview. It is awful to have a lower standard of proof for someone just because they have a learning disability or cognitive problems…and that you can be thrown in a care home for life by these people, whereas a criminal who is convicted gets a finite sentence, and a date on which they are set free again!

    • they made up stuff about her in court, eg saying she gave her father a wooden cross ‘to prevent the evil in the home from hurting him’ (so what? she’s a christian!) and that she left abusive answerphone messages. But the social worker who was trying to getoff the hook couldnt produce it as evidence in court! Why do they automatically believe these people?

  3. Case here of a scandal in 2012 – they automatically put ‘do not resuscitate’ on the medical records of a guy with Down’s when he went into hospital…not because there was any clinical reason to think it wouldnt be appropriate, or because he gave informed consent, but just because he was learning disabled (in the inset box on this story….http://www.dailymail.co.uk/news/article-2598744/Family-pensioner-hospital-furious-not-resuscitate-order-notes-without-permission.html )

    • Insure that the people with diminished mental capacity are happy in the environment in which they live and that the environment is stimulating.

  4. System have to be open-systems wether public or family, in order to work well and evolve. Until they are open they can’t evolve and change. There has to be love in all work we do, in public systems and family system. I know we hear this and hear this but it is truth, love is the way.

  5. It is appalling what we do to our Special Needs people I work for C.L. and see these wonderful people every day. To watch them walk down the street of our town is good for the rest of the community they look at their life in a different way. When you see the love that they give is humbling experience. Glad your sister is at home.

  6. This is just one of many situations where people are not being treated fairly. It is very easy to falsify records so elderly people or those with disabilities can be institutionalized. I work with some clients who are being abused by their families and when we report them to the proper authorities, nothing is being done. Organizations today care more about politics and power than being caring helping meet the real needs of people.

  7. If family is willing to care for one of their family members a person should always be in the care of family other than strangers or a nursing home, especially when the person is not frail and elderly to be placed in such an institution.

  8. What concerns me the most is that sibling #4 is on the board of directors for the Rekai Centre and that would be a conflict of interest, not to mention that Franke is willing to take her in unconditionally. Another is the Assessment that says she is able to sign her own POA and then to have the system ignore that fact.

  9. I am so glad that Franke is there for her. At least she has one sibling in her court. Kuddoes to you Franke

  10. I work in the system. There are cracks – huge cracks.
    1. Although the sector is working on aging, why are we putting people who shouldn’t be in nursing in long term care – it’s another form of institutionalization! This causes all the good work that has been done on inclusion to be undone very quickly.
    2. The DSO doesn’t work and why aren’t they working with the CCAC…WTF?
    3. Looks to me like what Teresa needed was help with SIL (Supported Independent Living), where she could thrive and still be supported by her family.
    4. The Rekai Centre sucks.
    5. The fact that her Father was taken to hospital under the Mental Health Act is disgraceful – just for protecting his daughter…c’mon…seriously?
    6. What about all those people who don’t qualify for support decided by the DSO… where the heck are they? What’s happening to them now, tomorrow and ahead?
    7. I know of someone who got put into Long Term Care in her 30’s because her primary care giver died and her family didn’t want to deal with her even though a kind family agreed to take on the primary role. Guess what…no one knows how to find her and she’s probably regressed significantly. Sad.
    8. The front line workers and their administrators feel this pain also.
    9. Independence is being stripped from the people that the system was set up to support by requiring capable adults to be treated like children. After telling them they have potential to be independent the system strips it away.
    and
    10. Although those of us on the front line do all we can, we are bound by legislation and bureaucracy and we are yelling for improvements – we have ideas – listen to us.
    Thank you Franke for your fight.

  11. It reminded me so much of the story, long ago, about Justin Clark who now resides in Ottawa. Congratulations on making this injustice public. Apologies seem so very little in comparison to all the stress and distress caused by the underhanded actions of greedy people.

  12. I fell that I am more and more considered as a number and an object by all administrations and public services. If a «normal» person like me feels so, I can imagine what happens with disable people.

  13. This is horrifying. Theresa has a loving family. How date this govt. group go against everyone’s wishes and remove her from from her home. They should be chargedcwith kidnappings or whatever is appropriate. Thank goodness the police were caring enough to see she was where she needed to be and didn’t remove her from her home. There should be a law suit started!

  14. This sounds like all the cases I read about elder abuse in the US, it is a mind boggling travesty of (so called) justice.

  15. I noted Teresa’s name misspelled on several documents as ‘Theresa’.

    Is this an automatic means to void such documents?

    Regardless, the system is so broken! But let’s complain about our overcrowded institutions too. Maybe we should be looking closer at who is living where & if the admission really represents the best route for all involved. I fear for my future!

  16. The system is broken. The people who falsified the documents should be charged. This is what happens when private healthcare facilities are set up. They are in the business to make a profit. The problem starts with Government. It is the current one, that is destroying the Canadian Health Care System. They are allowing private Corporations to take away are rights, make decisions for us and our health, without any oversight. “It is all about the money”.

  17. Was there a financial incentive for the nursing home to have a Downs syndrome resident? I have heard of many cases in the U.S. of vulnerable people whose family members were happy to care for them being forced into nursing homes because the homes could get government money that way.

  18. There is way to much of this happening all over Canada yet we never hear about it.
    People being institutionalised will in mental hospitals against their will and prescribed psychotropic drugs as sedatives is a big problem as well that is being is being ignored.Well done to Teresa and her dad and anyone who helped.

  19. Our society has not made room for people with cognitive or learning disabilities. This is a huge disservice as they are human beings who deserve dignity and respect.

  20. Thank gosh she is where she wants to be wih family who care 🙂 I have had huge issues with CCAC’s and the power they exert. My dealings were with Peel CCAC – too much intimidation and threats to older, vulerable people while far too many of them sit in an office on their butts yet on the sunshine list. Get the money back into fromt line care, listen to the wishes of the family and client and be respectful. The woman involved here should be fired! There are many qualified, compassionate people who would be willing to do the job.

    So mmuch love and happiness to Theresa, her Dad and siblings who loves her and cares for her.

    A pox on the administraator and siblings who tried to deny her basic human rights and have her hidden away with some old folks (of which I am one)

  21. This story is very disturbing to me.It is difficult to believe that people in “power”behave like this.To make up and distort facts is criminally wrong. Poor Dad who just loved his daughter,and was treated so bad.I hope all are well now.. SJ

  22. You are fortunate that Physically Disabled people have Canadian Charter of Rights protection, unfortunately people who are Mentally Ill have no Charter protections in Canada thanks to the BC Government & the Federal Conservative party. That is 20% of Canada’s population at some point in their life with no rights. The Mentally Ill also have no right to the protection of a Substitute Decision Maker in BC.

  23. People with a light intellectual deficiency are able to take care of themselves more when they are supported by their family. When they are taken in nursing home they become sad and they don’t have taste for life. You can see that Teresa is very happy with her life and capable and independent. I saw a person at university with this syndrome working and speaking in front of my scholarship group. He was amazing. He spoke during 3 hours and he was very interesting. Protect people having mental disabilities is very important. They are human and have the right to decide of their life. There is too much judgements about those people. So, Laws should be there to protect human and not manipulated people that are powerless.

  24. Dear Terese & Franke, I would be interested
    in signing, but first would like to know
    where your father is at & why? Being 90 does not make him incapable of making his own
    decisions regarding his own well being or
    his daughters.

    Laurie Woodward

    • Hi Laurie,

      I agree. Although Dad had episodes of dementia, he was on the ball most of the time. The CCAC has agreed to investigate because the records show that they totally ignored Dad’s wishes. Take a look at my presentation to the Select Committee to see the documents:
      http://teresapocock.com/capacity-and-courage/

      You asked where my Dad is now… Here’s the reply I gave to another commenter.

      Teresa’s father (and mine) was living in his own condo until December 4th. Then he was put into a nursing home. A few days before he was admitted, he came to dinner at my house, with Teresa. He was in great shape mentally. He knew all of us. He joked and laughed. He enjoyed dinner. I warned him that my siblings were trying to put him into a nursing home. He said he would not go. A few days later he was somehow persuaded to go in.

      My siblings said he’d be happy there because it’s for veterans. Which it is. But it’s no country club… he’s in a lock-up ward for those with Alzheimer’s. Which is very sad because dementia is shades of grey, it’s not black and white. He could have lived in his own condo (with help) for another year. Personally, I would have liked to see Dad mortgage his condo so that he could have stayed — but my siblings did not support the idea.

      Franke

  25. You should contact a lawyer and have them charge with endangerment as some older people with mental health issues have killed other seniors in those homes for the aged. That should never happen to people with special needs that family members are willing to take care of. I believe those that signed the documents should be prosecuted for there actions and removed from there jobs of taking care of any people in future as they are incapable of make a discussion of peoples well being. They should also losses there pensions from there position for there abuse of power. Give it to the wrongfully convicted people they harmed by there bad choices.

  26. As an adult, with competent people supporting her wishes, I believe that this woman should be allowed to live where she wants, especially since her living arrangements would include those who love her. People like teresa should have their needs assessed individually, not according to an impersonal, mindless template

  27. They do not have the right to make the decision for the family or the person just because they are not perfect to them. God made us as what he or she is considered perfect in his eyes. Not in others. Strip the ones that make bad choices for other put them in there place. They have no business to put people with special needs in homes for the aged.

    • Karen,

      Teresa’s father (and mine) was living in his own condo until December 4th. Then he was put into a nursing home. A few days before he was admitted, he came to dinner at my house, with Teresa. He was in great shape mentally. He knew all of us. He joked and laughed. He enjoyed dinner. I warned him that my siblings were trying to put him into a nursing home. He said he would not go. A few days later he was somehow persuaded to go in.

      My siblings said he’d be happy there because it’s for veterans. Which it is. But it’s no country club… he’s in a lock-up ward for those with Alzheimer’s. Which is very sad because dementia is shades of grey, it’s not black and white. He could have lived in his own condo (with help) for another year. Personally, I would have liked to see Dad mortgage his condo so that he could have stayed — but my siblings did not support the idea.

      Franke

  28. these things should not be allowed to happenin a civilized society to a capable supported individual

  29. these things should not be allowed to happenin a civilized society to a capable supported individual

  30. Canada was the first country to ratify the CRPD (Convention of Rights for Persons with Disabilities). At the time they inserted a RUD that must be removed so the Convention stands as it is written.

    People with even the most severe disabilities have the right to make their own decisions, no matter if their choices are risky or ultimately turn out to be mistakes, a United Nations panel says in new guidelines to nations.

    http://www.disabilityscoop.com/2014/04/23/un-disabilities-free-decisions/19303/

  31. Thank you Franke and Teresa for documenting your situation and sharing it with all of us. You have presented the information very clearly and generously. It is important to make all of these procedures public to take the mystery out of them. That way, changes can be made based on real people and their lived experiences as opposed to assumptions about consent and capacity. The laws in Ontario need to change and Supported Decision Making must recognized. Are you working with others to push for these types of changes?

  32. Unbelievable! Fix this Now!
    So frustrated with the system. They just paid out and apologized for steeling Native children from their parents. Still doing it I see. We all have or know someone with a story, Except for the government officials who live in glass houses.

  33. This is what happens when we have privatized health care. Public Private Partnerships are a way to bring in privatized health care, where bodies in beds equals profits. Taking advantage of a woman with Down Syndrome is shameful.

  34. OMG is so right. I know it isn’t the same thing but these organization need to fall under the supervision of an Ombudsman. I say that because they have way to much power and it totally reminds of me of the abhorrent behaviour of the Children’s Aid Society. These organizations seem to continue to make decisions without consequence and we as Ontarian’s and Canadian’s need to take responsibility, be aware of our rights and make some very important changes to ensure and preserve the rights of everyone no matter what the issue is!

  35. I am so grateful for Franke’s perseverance for the sake & health & happiness of Teresa & thank you so much for sharing! Some of my personal experiences with Ottawa’s CCAC and local PSW providers are equally uncaring of the actual client and respecting their humanity & dignity. Clients without energetic & savvy advocates truly have a high risk of having their rights & themselves abused – it’s the whim or luck of the draw wrt your Case Manager’s and then local company’s representative/coordinator (that supervise the front-line workers level of care & ability). Look at all the people involved; that’s a lot of poorly spent $$ for the often dismal service provided to some of the most vulnerable citizens. There are 6 regular workers in my home and basic care values, like handwashing do not get followed; let alone safety tasks, like ensuring there is not water on the bathroom floor after bathing (a slip & fall risk) for my spouse with MS, but they generally have time for telling stories of their personal lives in a very loud voice & drinking their coffee/teas.
    Scary stories from the UK, and we do need to avoid the flaws in their laws & policies.

    • I have seen this many times, i can see manipulation here, it is clear she is being bullied and red taped by others, let her alone,her father knows best.

  36. Life is sooo short and it’s the only one we’ve got. To try and take away someone’s freedom in such a way is one of the worst injustices I can imagine.

  37. I find this a very disturbing story. What particularly puzzles me is the motivations of Teresa’s other siblings in regards to her and her father.
    The account of their actions reads like something out of a melodrama.

  38. I think it is very disgraceful what the system did to this young lady. Her father was capable of taking care of her but even then that was not good enough. Someone offers to allow her to stay with them and family and system get their back up and make up some illusion of false statements wrongly assessed her needs. I believe this Teresa deserves an apology along with her father deserving the same for the way he was treated as well. I could never personally put my family member in a home of any kind as long as I am capable of taking care of them.

  39. Thanks To Franke for being so persistent. It shows great courage to keep fighting for something you know will benefit someone. People with a disability deserve to have their rights acknowledged and not have them taken away.

  40. Its so good to see that the right thing was done in the end. To even suggest a Nursing Home for Teresa is so ridiculous. Some people are just mean through and through.
    Remember always, what goes around, comes around.

  41. This is so awful but I am so happy for you that it ended well!
    Almost 10 years ago I was forced into an Ontario hospital against my will and the doctor there made my abusive family member my SDM which led to my being strapped to a bed for 2 weeks before being shipped off to some institution.
    My friend got me out and cared for me on her own but as my health declined she called CCAC for assistance who then called my abusive family member and together they tried to force me into a nursing home. I was only in my 20’s.
    We had to flee our home to avoid having me forced into a nursing home and were homeless for over a year.
    I have a disability and at this point am living alone but CCAC refuses to provide any services and sadly caring for me on her own has taken a wicked toll on my friend so we are now both struggling to survive. It shouldn’t be this way.

  42. The system put in place MUST be seen as the LAST resort to come in play in that kind of situation. Not only should they give apologies, they should be condemned and pay damages to that lady and familly, thus providing what they so longed wished to offer, stability and safety to that lady.

  43. Such a sad story with a great outcome. Teresa looks more than capable of participating fully in life and any decisions regarding her own care and living situation. Makes me worried about those who don’t have anyone in the corner rooting for them.

  44. … I Have Already Signed This.. So I Will Remind You Again.. I Am On The Side Of Disability Rights!! ((:”There Is Nothing Wrong With Teresa Pocock’s Wants & Rights To Be Fully Independent.. With Some Guidance From A Worker For Legal Representation..”:))

    Do Not Put Her In A Long Term Care Facility!!

    R.McG.

  45. It’s absolutely disgraceful that even after WE made efforts to prevent institutionalization, this type of thing can happen, The Ontario Government ought to be ashamed of themselves, Wynne,and the rest of the Government and CCAC as well as the RSW’s and SSW’s in all of Ontario, SHAME ON YOU!!!!

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