Category: Petition

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“I am alive! I am reborn in Gastown!” says author and artist Teresa Heartchild.

Teresa is defying the “health care system” that wrongly labelled her “incapable” two years ago when she lived in Ontario.

In 2016, Teresa Heartchild won a DTES Small Arts Grant to create her first book, Pretty Amazing: How I Found Myself in the Downtown Eastside. The book is now available on Amazon and in Kindle and Apple iBook formats. Teresa’s book launch and solo show took place on June 29 at Gallery Gachet, in Vancouver, B.C.

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Winning the arts grant inspired Teresa to focus on creating an illustrated book. Before that, she had never created a book. Or exhibited her art. Or shown people her poetry. Now, Teresa is a professional artist, poet and published author. Her achievements are impressive for anyone, regardless of I.Q. Her artistic voice is confident and bold.

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“It’s a wonderful testament to her artistic ability,” said her sister Franke James. “The artwork is fun and engaging. It expresses her discovery of the Downtown Eastside. It expresses a love of her life.” Teresa creates her illustrations using magic markers on fine art paper. The 4ft x 5ft posters are digital reproductions of her art printed on flexible plastic sheets (just like bus shelter posters). The posters can be rolled and transported anywhere in the world — so she may one day have an international exhibition!

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Teresa stands in front of her Hastings and Abbott illustration and poem from her book, “Pretty Amazing: How I Found Myself in the Downtown Eastside“. Teresa has mapped out the neighbourhood as she sees it. Her favourite coffee shop is Prado. She shops for groceries at Nesters and Costco. She loves to visit Gallery Gachet, London Drugs, Top of Vancouver, Woodwards and the Flying Pig. From her home in Gastown, she watches the big cargo ships, like Hanjin, Hapag-Lloyd and Hyundai sailing into the Port of Vancouver. All of these elements combine to create her distinctive visual and poetic vocabulary.

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Pretty Amazing! The show drew a large and lively crowd. Supporters from Inclusion BC, Spectrum Society, PLAN Institute, the BC Humanist Association, All Bodies Dance, MP Jenny Kwan’s office, the City of Vancouver and Community Living BC all came out to see Teresa’s art.

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Discovering the Downtown Eastside: Teresa draws inspiration from her surroundings. She can see the Vancouver Sun building and the Harbour Centre from her home in Gastown. Her poems originate from her self-talk. Teresa reads her poems aloud, and continues working on them until she’s happy with them.

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Art builds community: Teresa has been participating in the weekly Expressive Arts workshop at Gallery Gachet where she has met other artists in the DTES, including Laurie (above). Having her own solo show at Gallery Gachet was a big step forward for her. She was able to show everyone her art, her poetry and her video, “I am Alive.”

Those Monsters by Teresa Heartchild

Art is a healing tool. Teresa continues to feel the fallout from her experience of being forced into the nursing home. She expresses her worries in her art and “self-talk” poetry. Her poems reflect the dialogue she has with herself. Often, she takes on the role of her own parent saying, “Please be nice to my daughter.” In the poem, Those Monsters, she encourages herself, “you’re not afraid of those monsters. you have the power of attorney.” (Her power of attorney document helped win her release from the nursing home. to this day, Teresa carries the updated document with her wherever she goes.)

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The Schedule is a poem that reveals how Teresa organizes her day. She plans exactly when she’s going to have breakfast, lunch, snack and dinner. Her drawings often incorporate numbers, which represent the times of the day. We hear her sense of humour and wordplay when she writes, “We are quite a pair. eat your pears at Nesters. I love Perrier.” When she recites the poem she laughs at her own cleverness.

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Teresa’s sister, Franke James, speaks with author Ted Kuntz about Teresa’s exuberant art.

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Gallery Gachet says “Art is a means for survival.” They have provided a supportive and very accepting community — exactly what Teresa needed to blossom as an artist and poet.

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Teresa stands in front of her illustration and poem, “We Love it Here”.

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Gallery visitors watched Teresa’s video, “I am Alive.”


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A local artist wrote in Teresa’s Pretty Amazing Guest book, “I’ve never seen anything like this!” Others commented on her wonderful use of colour and shape. Teresa has indeed found her voice in the Downtown Eastside. It is a voice that talks about feeling “butterflies”, but still finds the courage to fly. Teresa has, in her own words, been “reborn in Gastown”.

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The former secretary at Teresa’s Grade School in Ontario read about the show in the Vancouver Sun and dropped in. She wrote, “Wonderful to see all this artwork by Teresa. What a girl!”

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Our local MP, Jenny Kwan, gave Teresa a congratulatory certificate which recognized her “wonderful drawing, creativity and achievement.”

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Teresa gives special thanks to the Vancouver Foundation for the DTES Small Arts Grant that made her Pretty Amazing book and show possible!

Media about the show:

VANCOUVER SUN:
Artist with Down syndrome written off as ‘incapable’ blooms in the Downtown Eastside
THE PROVINCE:
Artist with Down syndrome written off as ‘incapable’ blooms in the Downtown Eastside
GLOBAL NEWS TV:
Artist with Down syndrome, called ‘incapable’ opens solo art show
BC BOOK LOOK:
Eastside Inspiration 

About the Artist/Author

Pretty Amazing Cover KindleTeresa Heartchild is an artist and poet living in the Downtown Eastside of Vancouver. In 2016, she won a DTES Small Arts Grant from the Vancouver Foundation which enabled her to create her first book, Pretty Amazing: How I found myself in the Downtown Eastside. Teresa exhibited 18 “Pretty Amazing” artworks as 4ft x 5ft posters in her first solo show at Gallery Gachet which launched on June 29, and wrapped up on July 2.

As a self-advocate with Down syndrome, Teresa presented her story, I Love My Human Rights, at the 2016 Canadian Down Syndrome Conference in Montreal. Teresa is a member of the BC Civil Liberties Association, Gallery Gachet, Inclusion BC, Family Support Institute of BC, and the Canadian Down Syndrome Society. She loves chicken pie, word play and spotting the big boats in the Burrard Inlet.

Where to buy Teresa Heartchild’s book:
Pretty Amazing: How I Found Myself in the Downtown Eastside is available on Amazon and in Kindle and Apple iBook formats.

Credits
Primary event photography: Zack Embree
Some additional photos by Franke James and Billiam James
Gallery Gachet: “Art is a means for survival.”

Oh Teresa, the places you’ll go!
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And the things you will do.
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The people you’ll meet.
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Who will cheer you and greet.
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Fifty years young and your life has just begun.
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You’re a wonderful, wonderful, wonderful one.
JulietTeresa

Oh Teresa, the places you’ll go!
Your head in the clouds. Your feet on the ground.
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Your new life at 50 is super fun all way around.
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You’ve zoomed by jet plane, you’ve flown by race-car,
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Your new passport has taken you from near to far.
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From New York to Washington DC,
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From Muddy York to the shores of the Salish Sea,
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With that sparkle in your eye and the skip in your step.
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We’ve just gotta ask…
“What were they thinking when they put you in a nursing home?!”
It’s no place for YOU! No. No. No.
Teresa at the Rekai Centre Nov 30 2013
For a girl like you who just wants to have fun?!!
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Fifty years young and your life has just begun. 
You’re a wonderful, wonderful, wonderful one.

Oh Teresa, the things you will do!
You’re power-walking and chicken-dancing,
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And scootering around town!
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Banking your money,
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And stretching way up to the sky!
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Oh Teresa, the people you’ll meet!
You have new friends who are green.
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And friends who are wild it’s true!
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And friends who shimmer like rainbows.

You have friends who like to spend time

Just dancing with you!

Oh Teresa, the places you’ll go!
The things you will do.
The people you’ll meet.
Fifty years young and your life has just begun.
You’re a wonderful, wonderful, wonderful one.

Congratulations Teresa!

Teresa’s Petition

It has now been more than seven months since Teresa was forced into Long-Term Care, against her wishes, and against the wishes of her father. She is still waiting for an apology from the Rekai Centre, who called the police trying to force her return. Fortunately, her Father secured her release. Teresa is also still waiting for a response from Hon. Dr. Eric Hoskins and the Ontario Government Ministry of Health and Long-Term Care which is “inspecting” the matter.

Teresa needs your support. Please sign Teresa’s petition at Change.org

Please sign Teresa’s petition at Change.org

Teresa Power Walks: Forced into a Nursing Home at 49. Now She’s Free!

Watch Teresa Heartchild ‘power walk’ — and ask yourself how anyone could think she belongs in a nursing home! It is crazy! Who would deny Teresa her freedom?

Unfortunately that’s exactly what happened last November. Teresa who has Down syndrome, was forced against her will into an old-age nursing home, by the CCAC and two of my siblings. 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.

But then the nursing home called the police, in a shockingly callous and bizarre effort to force her back.

By signing the petition you can help Teresa get an apology for the harm done to her. Teresa is asking the CCAC to apologize for wrongly taking away her human right to decide where she lives. Teresa is asking the Rekai Centre to apologize for calling the police in a completely unnecessary, intimidating and callous attempt to force her back into their institution. We need to stand strong to protect the rights of developmentally disabled people so that what Teresa experienced does not happen to anyone else.

Please sign Teresa’s petition, because human rights should be for everybody. Thank you in advance for your support!

Hi I’m Teresa Heartchild

Forced into a Nursing Home at age 49.
Now she’s free.

Much better.

Hi I’m Teresa Heartchild, I’m 49.

Fighting the system
For human rights.

I’m having fun.

I’m power walking.
I’m power walking.
I’m power walking.

It’s my right.
It’s my right.
It’s my right to decide where I live.

For all the people with disabilities

Please sign my petition at
Please sign my petition at
Change.org
Change.org

Please visit me on the online at
teresaheartchild.com

Much better.

————
Music Credit: Dan-O at http://danosongs.com/
Song Title: Book of the Monkey

Great story in the Toronto Star by Antonia Zerbisias about Teresa and her adventures “power-walking” toward independent living!

Toronto Star: Teresa Heartchild’s passport to a new life with Down syndrome

Teresa’s passport to a new life with Down syndrome

March 29, 2014

Antonia Zerbisias
Posted with permission from Toronto Star

Teresa Heartchild is in the dining room, flashing her new Visa card.

She’s proud she can take her brother-in-law, Bill James, out for coffee and doughnuts after they power-walk through their Bedford Park neighbourhood.

On the other side of the table, her older sister, Franke James, props up her iPad, which is playing a video of Teresa applying for that card at the bank.

Asked to share her PIN, Teresa is shocked: “It’s personal. I’m not supposed to tell.”

At 49, Teresa is finally handling money. For the first time ever, she knows the price of orange juice. She can distinguish between bills and coins.

“She just never had any training,” Franke explains, adding that Teresa has, despite attending many day programs, been “cocooned” all her life.

Now that she’s living with Franke and Bill, Teresa has been getting lessons on independent living. Not that she will ever be on her own. She was born with Down syndrome and, despite her boast that she “can walk faster than a speeding bullet,” she faces mobility as well as other challenges.

But not nearly as many challenges as Teresa and Franke’s four other older siblings — all but one have asked not to be named in this story — believed she had when their elderly father Joseph could no longer care for her in the condo they shared. Teresa had lived with him since her mother died in 1999.

That’s why, on Nov. 27, and against her father’s wishes, those siblings had Teresa admitted to Toronto’s Rekai Centre, a long-term care facility filled mostly by people much older and less able than she is.

Franke and Bill believe Teresa was made out to be less capable than she is now proving to be. They charge that Teresa’s siblings worked to get her on a “crisis list” that would move her into “a nursing home.”

They claim the Community Care Access Centre (CCAC), which deemed her eligible for long-term care, “ignored” its own positive observations about Teresa’s behaviour. They say the system that moved her into the Rekai Centre so quickly was “manipulated” to manufacture a crisis that didn’t exist.

“The fact is, Teresa’s human rights were taken away,” insists Bill. “We want to share her story because we want people to know the truth about how the system works.”

Bill and Franke, both writers and artists who work at home, are angry — angry at the social service agencies that assessed Teresa as showing signs of dementia, angry that she was placed in “a nursing home,” angry at Teresa’s family.

Now they want apologies on Teresa’s behalf — and last week they got one. Toronto Central CCAC CEO Stacey Daub posted one on a petition Teresa and Franke put online.

“My siblings were desperate, but they didn’t have to be because we had offered to take care of Teresa for the rest of her life,” says Franke, producing a stack of emails between her and the rest of the family.

“If you had asked me a year ago to take her, I would have said, ‘No, let’s look at other options,’” she continues. “But once I got the sense that they were serious about putting Teresa in a nursing home, we stepped in.”

In January, Franke took Teresa’s case to the provincial Select Committee on Developmental Services, where she testified that the consent and capacity laws are “easily abused” and that “disabled and disadvantaged people are getting hurt.” She has even filed a complaint with the Human Rights Tribunal.

None of this is a knock on Teresa’s other siblings, who have doted on her all her life, taking her to their cottages, making sure she makes it to medical appointments, having her over for meals and holidays. In fact, every year, her two dozen nieces and nephews make a “Christmas calendar” for her, marking off the days they will each take her to a movie, or shopping, a hockey game or on some other outing.

But now the anger and resentment — on both sides — are palpable.

A misunderstanding? Miscommunication? “Manipulation?”

Depends on whom you talk to.

Three of Teresa’s siblings would communicate solely by email. Only her sister Joanne Mills spoke on the record with the Star. She maintains that the Rekai Centre was just a temporary stop for Teresa, until a suitable group home could be found.

“The real story here is that there should be more group homes,” she insists in a brief interview, adding that the family acted out of concern both for Teresa and their father. “Because no family member stepped forward to say that they would take her — we truly did not know that (Franke) and her husband would take Teresa — and no group homes were available, there was nowhere else for Teresa to go.”

It’s an all-too-common situation when parents of adult children with Down syndrome grow too old, or too ill, to care for them, despite government supports, community programs and social services. That’s because people with Down syndrome are living longer — so much longer that even their siblings are themselves ailing or otherwise unable to take them in.

“We have an aging population of Down syndrome clients,” notes Julia Oosterman, director of Communications and Stakeholder Relations at Toronto CCAC. “Appropriate housing — supported living, group homes etc. — is an area that we need to plan for as our population ages. Long-term care, while it may be the only available option, may not be suitable, and the health-care sector needs to consider how we plan for this.”

For her part, Mary Hoare, chief executive officer of the Rekai Centres, writes in an email: “It may not be ideal, but the top priority is always to ensure that, if someone is in urgent need and we have the space and capability to take them in, we will do so, and they will be safe and well cared for.”

But Bill and Franke say there was no urgency for Teresa.

“We offered four times to take Teresa, but the CCAC was never informed,” Franke said.

According to Dr. Terri Hewitt, vice president of community programs and adult services at Surrey Place Centre, the need for group homes is urgent. She counts 215 adults in Toronto on the waiting list. Of those, 102 are “ready” for placement now, while 59 are considered urgent and high-priority.

“If you’re in long-term care because you don’t have somewhere to live, then you become high priority,” Hewitt explains, avoiding the specifics of Teresa’s case. “If you’ve been transferred temporarily to long-term care placement to keep you safe, you would be escalated on our priority list. We would be actively looking for something. The more high priority you are, the more you are identified when vacancies come up.”

Hewitt can’t provide figures for how many adults with Down syndrome end up, at least temporarily, in nursing homes — but many do. Some for good.

“Even the most caring of families can have differences of opinion on how to proceed,” she admits. “It’s a difficult road to follow and preparation is the best thing that you can do.”

This particular story has a happy ending.

Unaware of the storm around her, Teresa is thriving in her airy new home. Since Dec. 1, when her father, Bill and Franke removed her from the Rekai Centre, she has been learning photography. She loves to play Scrabble. She cooks and she’s been hitting the road.

A new capacity assessment in January found Teresa to be “capable” enough for things like granting Franke and Bill her power of attorney for personal care. In February, she accompanied them to Washington, D.C., and all this month, she’s been on the West Coast, where she met David Suzuki.

“We’re really enjoying her,” says Franke. “It’s been an eye-opener.”

And for Teresa, it’s a wide new world.


Toronto Star

Reprinted from Toronto Star, in the “com.smg.cq.components.page.SectionImpl@1b838653” section.

[iCopyright]2014 Torstar Syndication Services. All rights reserved. Licensed by Mrs Franke James on March 29, 2014. You may obtain additional permissions to reuse this article at the following iCopyright license record: http://license.icopyright.net/3.7212-51078. Torstar Syndication Services and Toronto Star logos are trademarks of Torstar Syndication Services. The iCopyright logo is a registered trademark of iCopyright, Inc.

See the Toronto Star: Teresa’s passport to a new life with Down syndrome

Just two days after Teresa launched her Change.org petition the Toronto Central CCAC (Community Care Access Centre) has stepped forward with an apology.

Toronto Central CCAC CEO Stacey Daub writes:

Teresa I am very sorry for what has happened to you over the last few months. I apologize for any part the Toronto Central CCAC contributed to this.

If you are willing, I would very much like to meet with you personally to understand your experience with us and to hear your ideas of what we could do to better support individuals and families in situations similar to yours. I would also be interested in hearing how we could support the broader changes that you believe need to happen. Please let me know if you would like to meet.

Stacey

Teresa has responded with this thank you (which she recorded in the video above)

Dear Stacey,

Thank you for your letter. And thanks for the beautiful apology. It was beautiful.

Please ask the Rekai Centre to apologize to us, soon.

Yes, I would like to talk with you. My sister, Franke, will contact you.

Thank you.

Teresa

Teresa’s sister, Franke James, also responded by thanking Stacey and asking four specific questions about the CCAC’s role in Teresa’s forced admission to the Rekai Centre.

Dear Stacey,

Let me thank you for your apology on behalf of the Toronto Central CCAC. We are pleased to see you step forward. This has been — and continues to be — a very difficult time for all of us.

In order to make amends for what Teresa calls “the chaos”, we would like a full acknowledgement detailing “the part” where Toronto Central CCAC has failed — where you think other parties have failed — and what can be done to hold the parties accountable and thus ensure this never happens again.

How can it be right that people get speeding tickets for driving too fast, but there is no penalty for wrongly taking Teresa’s human rights away and placing her in a nursing home? If we had not stepped forward she would still be institutionalized.

It has been a nightmare and torn our family apart — I fear forever. Your clear admission of what went wrong, and who is responsible, will help our family heal. And may help prevent this trauma from happening to others.

We have a lot of questions about what went wrong. Here are four…

1. Why did the CCAC not follow its policy to protect and uphold the human rights of its client, Teresa?

On September 6, the CCAC assessed Teresa as being “incapable” of making personal care decisions, effectively taking away her human rights to decide where she lives and who cares for her. According to CCAC forms, the finding of “Incapacity” can only be made if there is certainty. If there is any doubt, CCAC is supposed to assume the client has capacity. Why, given the conflicting evidence in Teresa’s assessment, did the CCAC assume that Teresa was incapable?

2. Why the heck did the CCAC counsel my siblings how to take away my father’s rights as the primary caregiver for Teresa?

September 3 – Records show that the CCAC was informed that my father would oppose Teresa’s placement in a long-term care home. Because he was the Senior Power of Attorney for Teresa, the CCAC employee suggested that his rights would have to be removed before Teresa could be placed in a long-term care home.

September 10 – Records show that the CCAC interviewed my father and noted that he was “adamant” he did not want Teresa put in a nursing home and would consider litigation to stop it.

September 11 – Records show that the CCAC received a revocation document from my siblings. Despite the fact that this revocation was a direct contradiction to what my father had said to Mark Weitz the day before, it was accepted by the CCAC without question. What’s more, the document was signed by the spouses of the Attorneys, an obvious conflict of interest that renders it legally invalid in Ontario. The CCAC knew the witnesses were spouses of the Attorneys, yet Mr. Weitz accepted the revocation without question.

3. Why did the CCAC ignore what Teresa wanted — and assume her assertions about her own independence were false?

On September 6, in her assessment interview, Teresa stated confidently, “I shower myself”, “I dress myself”. Why did the CCAC case worker immediately reject Teresa’s statements as untrue? (Since Teresa has lived with me for over three and a half months, she has showered herself and always dresses herself.)

Why did Mr. Weitz not do any further investigation in an effort to find out the truth? Instead, he bizarrely used Teresa’s statements of independence as evidence of her ‘insidious cognitive decline’.

On September 6, the records show that Teresa stated several times that she wanted “to stay at the condo” and she wanted “to live with my father”. Why were Teresa’s wishes ignored? Why was a long-term care home even considered, given that Teresa is young and able-bodied?

4. Why did the CCAC ignore my offer to take Teresa into my home? And continue to insist on Teresa’s placement in the Rekai Centre?

November 28: Records show that CCAC was informed by my lawyer that I (as Teresa’s sister) had offered to take Teresa into my home. Why was my offer ignored? It would have opened up a bed for a more needy person.

But the CCAC swept my offer under the rug, and continued with its plan of forced institutionalization. Indeed, when informed that Teresa had been taken out of the Rekai Centre under the care of her father and me, the CCAC recommended calling the police. Why?

For more questions and details, please see my Jan. 21st presentation to the Select Committee on Developmental Services at Queen’s Park:

Teresa’s story: Crisis, Capacity and Courage
http://teresaheartchild.com/capacity-and-courage/

We are still waiting to hear from the Rekai Centre. Considering that both the CCAC and the Rekai Centre are intertwined in this matter, we will continue to collect signatures and demand a full apology.

Regards,

Franke James

As Franke says, we still waiting for an apology from the Rekai Centre’s CEO, Mary Hoare.

We need your support for Teresa’s petition today asking the Rekai Centre to apologize for the harm they caused Teresa.

Please sign Teresa’s Petition on Change.org

Teresa Heartchild is 49 years old and has Down Syndrome. She is asking the CCAC to apologize for improperly taking away her human right to decide where she lives. She is asking the Rekai Centre to apologize for calling the police to force her back into their long-term care home.

To support Teresa’s request for a full apology, please sign her Petition at Change.org.

Video Transcript

My name is Teresa Heartchild.
I’m 49 years old. And I am turning fifty.
I am a female.

I have Down syndrome.

Last fall, the CCAC said I couldn’t make my own decisions.
The CCAC said I couldn’t decide where I live or who cares for me.
That was wrong.

It is my human right to decide.
I want the CCAC to say they are sorry.

Then in November, they put me into an old-age nursing home.
The Rekai Centre.
I did not want to be there. I was crying and scared.
So my Daddy signed me out.
And I went back home.

But then the Rekai Centre called the police
Trying to force me to come back.
Fortunately, the police said I was safe with my sister, Franke.

I want the Rekai Centre to say they are sorry.
I want the CCAC to say they are sorry.
It’s my right to decide.

Please sign my petition at change.org
Thank you.

To support Teresa’s request for a full apology, please sign her Petition at Change.org.

By Franke James on Change.org.

Please sign: Teresa’s Petition at Change.org

With the stroke of a pen, my disabled sister’s human right to decide where she lives was wrongly taken away.

In a heart-breaking move, Teresa who has Down syndrome, was forced against her will into an old-age nursing home, by the CCAC and two of my siblings. 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. But then the nursing home called the police, in a shockingly callous and bizarre effort to force her back.

Teresa is demanding an apology from these two institutions, the CCAC and the Rekai Centre. This is a sorry mess. Her records show that the crisis list was manipulated to get Teresa to the very top, and placed in the nursing home. Her profile contained false information which made her appear to need 24/7 care. See the presentation I made with Teresa, to the Ontario Government’s Select Committee:

Teresa’s story: Crisis, Capacity and Courage
http://teresaheartchild.com/capacity-and-courage/

By signing this petition you can help Teresa get an apology for the harm done to her. Teresa is asking the CCAC to apologize for wrongly taking away her human right to decide where she lives. Teresa is asking the Rekai Centre to apologize for calling the police in a completely unnecessary, intimidating and callous attempt to force her back into their institution.

We need a full apology from both institutions because this is not just about one person — it’s about standing up for and protecting the human rights of all people with disabilities.

We are getting traction — 48 hours after we launched this petition, the CEO of the Toronto Central CCAC, Stacey Daub, responded with a public apology to Teresa on change.org. “I apologize for any part the Toronto Central CCAC contributed to this.”

Teresa called the CCAC’s apology “beautiful”, but we have not won yet… The Rekai Centre has not responded. We need the Rekai Centre CEO, Mary Hoare, to offer a full and public apology for the harm they caused Teresa.

The truth is that if we had not rescued Teresa from the nursing home, she would have been living in an institution — with no right to choose otherwise — for the rest of her life. How could this happen in Canada? That’s what Teresa and her supporters want to know.

And Teresa is not the only one being hurt. Developmentally disabled people are routinely being forced into inappropriate “care”.

This is wrong. And it is having a catastrophic effect on the lives of so many people like Teresa.

Please sign our petition to help stop the discrimination against “disabled” people in our health care system.

Please sign Teresa’s petition, because human rights should be for everybody.

MORE DETAILS:

I presented Teresa’s harrowing story to the Select Committee on Developmental Services at the Ontario Legislature. (Teresa was present and consented to her health records being shared.) You can see the slide presentation I made on January 21st, which lays out the full sequence of events.

Teresa’s Story: Crisis, Capacity and Courage
http://teresaheartchild.com/capacity-and-courage/

Why is there NO accountability?

How could the rights of a developmentally disabled person be removed so easily? Teresa’s story shows how it was done, and why we need to hold the institutions, and those responsible, accountable — so that it does not happen to anyone else.

Teresa’s plight shows that there is NO accountability. This is ironic… If you drive too fast, you’ll get a speeding ticket. If you litter, you can face a hefty fine. But if you incorrectly take away the rights of a person with Down syndrome and place that person in a nursing home, NOTHING happens! There is no penalty and the health care institutions will not even say they are sorry!

After her discharge, Teresa wanted to regain the ‘capacity’ rights that the CCAC had taken away. Teresa wanted to make her own decisions about where she lived and who cared for her. So, in late December and January, Teresa was interviewed and assessed by an expert licensed capacity assessor who determined that Teresa is in fact capable of deciding where she lives.

That was a victory for Teresa! But the shocking fact is — if we had not stepped forward to protect her rights, Teresa would have been living in an institution for the rest of her life. (The group home alternative which miraculously popped up after Teresa’s discharge was no better than the nursing home. She would have been living with four other developmentally disabled people — all of whom were non-verbal, and three of whom were in wheelchairs. Considering that Teresa is able-bodied and very verbal this would not have been the optimum home.)

Teresa’s case shows that our consent and capacity laws are woefully inadequate to protect the rights of the developmentally disabled.

How were Teresa’s rights taken away by the CCAC?

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In a heart-breaking move, my lively 49-year old sister with Down syndrome, was stripped of her human rights and placed in a nursing home where she was surrounded by frail elderly people, many of whom were incapacitated and could not walk, talk or feed themselves.

Last fall, with the stroke of a pen, CCAC-Toronto wrongly declared Teresa “incapable” and recommended her placement in a long-term care institution in November 2013.

The CCAC records are riddled with false information. (I have obtained the records as Teresa’s new Power of Attorney for Personal Care.) Teresa was incorrectly described as needing 24/7 care. They incorrectly stated that she needed assistance to use the toilet and dress her lower body. Teresa was falsely depicted as a ‘wanderer’ and ‘violent’, but when those descriptions prohibited Teresa from most long-term care homes, they were retracted.

Teresa’s own statements about her independence (“I can dress myself. I can shower myself”) were used as examples of her insidious cognitive decline.

Why would the CCAC inaccurately portray Teresa’s abilities? I won’t speculate on the “why”, but the fact is that the CCAC’s incorrect health profiling enabled her to get to the top of the Crisis List, and into a long-term care home.

Why did the Rekai Centre call the police?

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Teresa spent four days in the Rekai Centre before we could get her discharged. On November 30th, my 91-year old father who had Senior Power of Attorney, signed Teresa out. That day, I spoke with the CEO of the Rekai Centre, Mary Hoare, and informed her that Teresa would be living with me. I sent her an email on December 1st confirming everything.

But then in a move which I can only describe as cruel and callous, the Rekai Centre reported Teresa as a “missing person”. On December 4th, three burly policemen were sent to my home to take Teresa forcibly back to the nursing home.

The fact that the Rekai Centre sent the police to take Teresa back is shocking and traumatizing. Why did they send the police four days after Teresa was discharged? Why didn’t the Rekai Centre just pick up the phone or email me? They knew where she was because they sent the police to my home!

Fortunately, the police reviewed our legal documents. They spoke with my lawyer, and interviewed Teresa herself. They concluded that Teresa was happy and safe living with me, and she did not need to be forced back into the nursing home. See more details here:

http://teresaheartchild.com/capacity-and-courage/

Teresa now lives with me.

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For the past three and a half months, I have been fighting for Teresa’s rights to live outside of an institution. Her right to decide where she lives has been restored and she is thriving: taking photos, walking, cooking, dancing, learning new money-management skills, and going on trips… She has accompanied me on trips to Washington, DC, Guelph, Ontario, Collingwood, Ontario, Vancouver, BC and Victoria BC. Teresa is now fully engaged in life and enjoying it! To learn more about Teresa, please visit www.teresaheartchild.com

We need to stand strong to protect the rights of developmentally disabled people so that what Teresa experienced does not happen to anyone else.

Please sign Teresa’s petition Thank you in advance for your support!

Related Stories:

Nowhere Else to Go: 2007 / Toronto Star
http://www.thestar.com/life/2007/02/16/nowhere_else_to_go.html

Disabled Forced into Nursing Homes
“In 1987, The Arc of Illinois filed a class action lawsuit on behalf of individuals with developmental disabilities forced into nursing homes who did not require nursing home care.”

http://newsletter.csfil.org/index.jsp?CAMPAIGN_ID=443&content_id=805

To learn more about Teresa, please visit www.teresaheartchild.com

Sign: Teresa’s Petition at Change.org