Canadian Paraplegic Association (Alberta)

For anyone interested, here is the URL to the Albertan Canadian Paraplegic Association’s online newsletter Wheel-E. You can subscribe to Wheel-E via email or phone (780-424-6312 for local calls or 1-888-654-5444 for toll free phone calls outside of Edmonton). If you have announcements you would like to post, you can submit them via the email address (the deadline for submission is the 26th of each month).

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Restrictive laws silences grieving parents

Publication ban prohibits naming deceased children, shields Alberta government from scrutiny.
Alberta’s ban on publicizing the names and photos of children who die in provincial care is one of the most restrictive in the country, robbing grieving families of their ability to raise concerns in public about the deaths and sheltering government officials from scrutiny.

About 10 children die in care in Alberta every year, but because of a law that prevents their names and photographs — and those of parents or guardians — from being publicized, the public is denied the right to know who they are and assess whether their deaths could have been prevented.

Basic information about the 145 children who died in care in Alberta between 1999 and 2013 was only released to the Edmonton Journal and Calgary Herald after a four-year legal battle. Still, we can only tell you the names of two of the 145. That’s because their parents applied in court to have the publication ban lifted — a step all parents must take if they wish to speak out about the deaths of their children.

Velvet Martin, who went through the court process, said the ban is evil and “the nemesis of justice.”

“They have failed the child in the utmost way possible and now they are stealing their identity — the only thing they have left,” said Martin, whose daughter Samantha died after being in care. “It’s bad enough to lose a child, but to have it covered up is just wrong and I won’t stand for it.”

With scant information on child death cases, Albertans are left to trust that the government will investigate and correct any systemic problems, yet often the same people responsible for supervising a case lead the review.

The result of the legislation is a blanket of confidentiality over the child welfare system.

Child welfare agencies won’t talk to the media. Several didn’t respond to repeated requests for information about how they protect children and one, citing the province’s privacy act, referred calls to the Ministry of Human Services.

People who work inside the system are barred from speaking publicly about their experiences; even those who spoke on condition of anonymity were afraid they’d lose their jobs.

Government officials argue the ban is necessary to protect the privacy of children and their families; in some cases, a child who dies might have siblings who are also in government care. Children in care are some of the province’s most vulnerable citizens, and provincial authorities feel strongly about trying to protect them.

“I think there is always a balance of values that you have to take into account,” said Human Services Minister Dave Hancock. “One of the values obviously is an open and transparent process so that people can know and understand what is happening and know that things are being handled in an appropriate fashion. The other value is you don’t want to intrude in the personal lives of families any more than necessary, particularly in circumstances like that where they have already suffered significant tragedy.”

In a press conference on Wednesday, in response to the Journal-Herald investigation, Hancock said that the issue of where that line should be drawn will be discussed at a roundtable of MLAs and experts scheduled for January. Hancock announced the roundtable on Tuesday.

The Alberta College of Social Workers supports the principle of the ban for the benefit of the family and any siblings.

“It could cause some definite hardship for the family,” said spokeswoman Lori Sigurdson. “They could be ostracized in the community. It could be a shame thing. Their relationship with the ministry and the worker who is working with them could become antagonistic or more difficult because they feel they have betrayed them.”

Hancock said the bodies that review deaths — including the child and youth advocate, the quality assurance council and the fatality inquiry review board — provide the public with appropriate access to information. He said it’s “not necessarily useful to publish a name and face just for the prurient interest of the opposition or others.”

However, in an interview this month, Hancock admitted he didn’t realize the law went so far as to prohibit parents from talking about their children and releasing their names to the media, and said he would look into it.

“I think families for the most part need to be able to heal and need to have the discussions that they need to heal,” he said.

That’s the argument made by the family of a 21-month-old aboriginal baby who died in a foster home in 2010.

“It is ridiculous. We want to tell our story and we can’t,” the girl’s aunt said. “We’re suffering in silence here.”

A Morinville foster mother has been charged with second-degree murder, but the case has not yet gone to trial. It could be years before the facts of the case and what went wrong are revealed — if ever.

Choking back tears, the aunt said problems with the system must be scrutinized if similar deaths are to be avoided. “Every couple of years, another child is dying in care, and it is usually a native kid,” she said.

Martin, the mother who had the ban lifted on her daughter’s name, said almost every family she has met wants to speak out, but they often don’t know their rights and can’t afford to seek legal advice.

“A lot of people don’t have the fortitude, they don’t have the education, the ability, to come forward,” said Martin, a spokeswoman for a national advocacy group called Protecting Canadian Children.

In her case, she was able to lobby for a fatality inquiry. During that process, she found out that while Samantha’s caseworker had assured her that the girl — who had a number of medical conditions — was getting exceptional care, the caseworker hadn’t seen her for 14 months, nor had she been examined by a doctor in three years.

“I was naive and under the impression that children’s services was doing an internal investigation and were actually going to do something other than cover their ass,” she said. “It was a hard lesson for me.”

Like Martin, Jamie Sullivan went to court to lift the ban on her daughter Delonna’s name — but she’s angry she had to. “If you want to arrest me for talking about my daughter, then arrest me,” she said. “You can’t take anything more from me than you have already. … And I’m not going to have somebody telling me I can’t show her picture. That’s just not right.”

The publication ban law is part of Alberta’s Child, Youth and Family Enhancement Act. It stipulates that “no person shall publish the name or a photograph of a child or of the child’s parent or guardian in a manner that reveals that the child is receiving or has received intervention services.” The penalty is a maximum $10,000 fine or up to six months in jail.

Prior to legislative changes in 2004, the ban didn’t exist. A 13-member task force, chaired by Calgary MLA Harvey Cenaiko and made up entirely of Conservative MLAs and child welfare officials, had recommended the change to government. Cenaiko told MLAs the new provisions were drafted to align with the Freedom of Information and Protection of Privacy Act. No mention was made that the ban remained in place after a child died.

Provincial privacy commissioner Jill Clayton, who wasn’t in office when the law was amended, said she can’t find any record of the government consulting the office for advice or guidance on the issue.

Across Canada, most provinces ban the publication of names of children who are in care or receiving services from the government, but lift the ban or decline to enforce it when one of those children die. Only Nova Scotia, New Brunswick and Quebec have bans similar to Alberta’s, and officials say Quebec currently does not enforce the ban when a child dies.

But in Alberta, despite the minister’s promise to review the ban, the government continues to enforce it.

This month, Alberta’s children services director refused a request from the Journal and Herald to lift the ban on the name of a Samson Cree baby, opposing an application that was supported with affidavits from both the child’s parents.

Being able to publish the names, photographs and personal stories of children who die in care are large factors in bringing about change, experts say. If parents are muzzled, there is no one else to speak for the children, said Robert Fellmeth, executive director of the Children’s Advocacy Institute in the U.S.

“These children have no lobby,” said Fellmouth, a professor of public interest law at the University of San Diego. “They have no campaign contributions. They don’t vote. Their sole asset is democracy, and public sympathy and concern, and disclosure. That’s the sole political card they have.”

Many laws to protect children are named after child victims, he noted. The Amber Alert system was named for Amber Hagerman, a nine-year-old abducted and murdered in Arlington, Texas, in 1996, while Chelsea’s Law in California, which increases penalties and monitoring of sexual offenders, was named after 17-year-old rape-murder victim Chelsea King.

In Canada, there’s the Jordan Principle that stipulates that care be provided for children when they need it and decisions about who is responsible for paying for it be made later. It is named after a five-year-old Manitoba Cree child named Jordan River Anderson, who died in hospital while federal and provincial authorities bickered over who was responsible for his home care.

And in other provinces, the deaths of children in care make headlines. In Manitoba, a public inquiry has put the 2005 death of five-year-old Phoenix Sinclair under the microscope; in Saskatchewan, RCMP are investigating the alleged 2013 murder of six-year-old Lee Bonneau by another child under the age of 12; and in Ontario, an inquiry has been probing the case of five-year-old Jeffrey Baldwin, who died in 2002 after years of mistreatment.

By comparison, in Alberta, when the child and youth advocate writes reports about flaws in the system, he has to make up names for the children. In July, he released “Remembering Brian,” and just last week he issued “Kamil: An Immigrant Youth’s Struggle.” Both are pseudonyms.

Even when a death of a child in care is examined at a fatality inquiry in Alberta, the children and parents are identified only by initials. Provincial court Judge Leonard Mandamin balked at this practice in an August 2007 fatality inquiry report into the suicide of a 16-year-old Tsuu T’ina boy. “The use of initials dehumanizes the tragic death of this young person,” he wrote.

University of Manitoba professor Arthur Schafer, director of the Centre for Professional and Applied Ethics, wonders who the publication law is designed to protect.

“My overarching concern is that privacy is being used as a smokescreen to conceal potential wrongdoing and to prevent the public from getting an accurate picture of problems that may turn out to be systemic,” he said. “Privacy considerations are important, but they aren’t absolute.”

Publication bans by province

British Columbia: The name and photo of a child who dies in care can be published provided information comes from family or other sources.

Alberta: It is illegal to publish names or photos of children who die in care without a court order lifting the ban.

Saskatchewan: The name and photo of a child who dies in care can be published provided information comes from family.

Manitoba: The name and photo of a child who dies in care can be published provided information comes from family.

Ontario: The name and photo of a child who dies in care can be published without restriction.

Quebec: It is illegal to publish the name and photo of a child who dies in care, but the law is not enforced.

New Brunswick: It is illegal to publish the name of a child who dies in care.

Nova Scotia: It is illegal to publish the name of a child who dies in care.

Prince Edward Island: The name and photo of a child who dies in care can be published.

Newfoundland and Labrador: The name and photo of a child who dies in care can be published if information comes from family or other sources.

BY DARCY HENTON AND KAREN KLEISS, CALGARY HERALD AND EDMONTON JOURNAL

Story can be found online here: http://www.edmontonjournal.com/news/Restrictive+silences+grieving+parents/9221675/story.html

Former residents settle Huronia lawsuit

The Huronia Regional Centre – this case has settled; there will not be a trail. To read the settlement agreement go to: http://www.kmlaw.ca/site_documents/080659_SettlementAgreement_17sep13.pdf

Members of the lawsuit looking for information can call 1-866-777-6311, or email huroniaclassaction@kmlaw.ca

~The History~

The Huronia Regional Centre located in Orilla, Ontario, was operated by the Ontario government from 1876 to March 31, 2009. It was the first institution of its kind in Ontario and was designed to house individuals who were deemed to have cognitive and other disabilities. Individuals could be admitted by parents and guardians, from training schools, or through the Children’s Aid Society.
At its peak, Huronia’s population exceeded 2,500 people. By the mid 1970s, the Ontario government operated 16 such facilities across the province.
When Huronia opened, there were no community services and supports available for individuals with developmental disabilities. Huronia was one of the last three facilities of its kind in Ontario, along with the Southwestern Regional Centre in Chatham-Kent and the Rideau Regional Centre I Smiths Falls, all of which closed in 2009.
~The Class Action~
Two former residents of the facility, assisted by their litigation guardians, are proceeding with a class action against the Ontario government to seek justice and compensation for severe abuse they and other class members suffered while residing in Huronia.
On July 30, 2010 the Ontario Superior Court of Justice certified this lawsuit as a class action for residents living at Huronia between 1945 and 2009 and other family members. The claim alleges that the Ontario government was negligent and breached its fiduciary duties to the residents and their families in the operation, control, and management of Huronia.

It is alleged that residents of Huronia suffered inhumane treatment and abuse at the hands of some of the staff. The allegations include severe mental and physical punishments for “acting out”, rooms were unnecessarily locked creating a prison-like environment, unnecessarily medicating the residents, residents were often not bathed, and forced to work without pay.

The class action will seek to provide evidence that officials knew about the abuse taking place but did not take the required action to stop it. Examples of such evidence include:

  • A 1971 report by Walter B. Williston, which was sponsored by the Ministry of Health, examined the conditions of Huronia. The report concluded that severe abuse and inadequate facilities were present at Huronia.
  • A 1960 article by Pierre Berton entitled, “What’s Wrong at Orillia – Out of Sight, Out of Mind”, which describes what he called “atrocities” at Huronia, including extreme overcrowding and physical and emotional abuse. This article ultimately led to Parliamentary debate.
  • A 1973 report by Robert Welch, Secretary for Social Development, calling for the creation of appropriate residential homes in the community to facilitate deinstitutionalization.
  • In 1976, a report authored for the Minister of Community and Social Services known as the “Willard Report” found serious allegations about the administration at Huronia. The report made several recommendations.
  • Affidavits by both plaintiffs, corroborated by their litigation guardians, chronicling the abuse each experienced while residing at Huronia.
  • Affidavits from former staff and family members of residents.

Since 1876 thousands of people in Ontario have resided in facilities like Huronia.  There have been many accounts of abuse taking place at these facilities, however little has been done to help the victims.

The victims of these abuses are entitled to adequate compensation and an acknowledgement from the Ontario government that it failed to live up to its obligations to care for these vulnerable individuals.

The Representative Plaintiffs

Patricia was admitted to Huronia at the age of six in 1964. At the time of her admission , Patricia was labelled as “developmentally challenged”. Everything in her life was dictated by Huronia staff.  Patricia recalls being repeatedly abused and punished – hit by a fly swatter or radiator brush, and held upside down in ice cold water. She was also administered medication to pacify her when she was found to be “speaking out”. Patricia was unable to report the abuse she experienced or saw at Huronia for fear of repercussion and threat of increased abuse. Patricia is now 52 years of age and living independently with assistance from the Ontario Disability Support Program.

Marie was admitted to Huronia at the age of seven in 1961. At the time of her admission, like Patricia, Marie was labelled as “developmentally challenged”. While at Huronia, her life was regimented and controlled and she was placed on medication to pacify her for “acting out”. At 16 she was placed into an “approved home” off the grounds of Huronia (but still operated by Huronia) where she was threatened, teased and physically and sexually abused. She did not report this, because she feared being returned to the centre. Marie lives in her own apartment   and supports herself.

Both women understand that their greatest obstacle has not been their disabilities, but the harm they experienced through institutionalization. They want this legal action to help others and ensure similar systemic abuse can never happen again.

The Litigation Guardians

To assist Patricia and Marie with this complex litigation, Marilyn Dolmage, a former social worker at Huronia, and her husband, Jim Dolmage, have agreed to act as Marie and Patricia’s litigation guardians respectively. The Dolmages have been friends with Marie and Patricia for many years. Both Marilyn and Jim have worked alongside people with disabilities in the past and are well informed in this area.

Huronia Trial Management Timetable:

(see the original source for links to many of these original documents)

September 17, 2013: This case has settled; there will not be a trial.

Important Dates ( these dates have links to original documents in the online source, see link at the end)

September 17, 2013 – This case has settled; there will not be a trial.

June 7, 2013 – An article written by Carol Goar entitled “Ugly secret of Ontario psychiatric hospitals won’t stay hidden,” has been published in the Toronto Star.

June 3, 2013 – The World this Weekend (CBC), June 2nd, Sunday edition,  featured a piece on the Huronia Class Action.

May 30, 2013 –  The survivors of the Huronia Regional Centre Patricia Seth and Marie Slark, along with their Litigation Guardians Marilyn and Jim Dolmage and legal counsel held a press conference today at Queen’s Park.

May 27, 2013 – The parties have exchanged responding expert reports in preparation for trial.

April 2, 2013 – The parties have exchanged expert reports in preparation for trial and in accordance with the trial timetable.

February 8, 2013 – Master Glustein presided over the Plaintiff’s motion to compel the Defendant to answer refusals made on the examination for discovery of Mr. Brian Low. Master Glustein ordered the Defendant to answer a number of questions that it had previously refused.

December 18, 2012 – A motion in this action will be heard by the Court on February 8, 2013. The motion relates to refusals made on examinations for discovery and documentary productions issues. The Plaintiff is seeking an Order from the Court that the Crown answer certain questions and produce further documents.

October 10, 2012 – In the process of answering undertakings and written questions for discovery, the Defendant advised that it had located a significant source of further documents to be produced.  The production of documents in this action was to have been completed February 29, 2012.  The Defendant has already produced over 50,000 documents to date.  In a case conference with the Honourable Justice Archibald, the Defendant sought and were granted an extension of time for certain aspects of the previous timetable (from March 7, 2012).  The trial of this action is still scheduled for September 2013.

October 1, 2012 – This action continues to proceed towards trial scheduled for the Fall of 2013.  The Plaintiffs have delivered a Request to Admit to the Defendant asking them to admit certain facts in advance of trial.  The Defendant’s responses are due November 1, 2012.

April 25, 2012 – The Plaintiffs completed three days of examinations for discovery of the Defendant between April 23-25, 2012.  The action continues towards trial which is scheduled for September 2013.  Expert reports, requests to admit, answers to questions taken at examinations for discovery are all expected to be completed in the coming months.

March 8, 2012 – A revised timetable has been set by the Honourable Justice Archibald that provides for this action to proceed to trial September 30, 2013. The next step in this proceeding is for the Plaintiff to complete the examinations for discovery of the Defendant, which are set to be completed by May 15, 2012.

February 24, 2012 – The Plaintiffs completed the first 4 days of examinations for discovery of the Defendant.  A further 5 days of examinations are tentatively scheduled for April 2012.

February 7, 2012 – Oral discoveries (examinations) of a representative of the Defendant will take place February 21-24, 2012.

December 23, 2011 – The Defendant delivered another set of documents as part of its ongoing obligations. The Defendant has now produced over 50,000 documents. Examinations for discovery of the Defendant are scheduled to take place in mid-February 2012.

December 2, 2011 – The Defendant delivered what is believed to be the last set of documents for the Plaintiffs’ review, bringing the total number of documents delivered to approximately 48,000.  Examinations for discovery of the Defendant is scheduled to take place in mid-February 2013.

November 17, 2011 – A trial date has been set for this action for a period of 10 weeks beginning September 30, 2013.

October 14, 2011 – The parties reached an agreement with respect to the redactions in the first two sets of documents produced by the Defendant, which averted the Plaintiffs’ motion which was scheduled for October 5, 2011.  The Defendant has produced un-redacted copies of most of the documents it previously redacted.  The Defendant has also produced its 3rd and 4th sets of documents, which are being reviewed by the Plaintiffs.

August 29, 2011 – As a result of concern regarding the aging class  members, the Plaintiffs filed a motion to fix a trial date at the  earliest practical convenience.  The Plaintiffs believe that the age of  the class members warrants a speedy pursuit to trial.  While no date is  set for the motion it is expected to be heard shortly.

August 8, 2011 – the Defendant produced its second set of documents  (approximately 4,000 documents).  The Plaintiffs have noted similar  redactions in the documents provided as with the documents provided  previously.   The Plaintiff intends on pursuing such redactions in the  motion noted below.

August 5, 2011 – After receiving the first set of documents from the defendant (approximately 2,000 documents) it was apparent to the Plaintiffs that the Defendant redacted (blacked out) information on a number of documents they produced.  Such information redacted included  names of ministerial employees and potential witnesses, information relating to assaults on residents, admissions information, and in other cases extensive portions of a document were redacted such that the Plaintiffs could not know what information was being withheld.   It is the Plaintiffs’ position that the Defendant inappropriately redacted such documents.  The Plaintiffs are concerned that further production from the Defendant will include similar redactions.   Accordingly the Plaintiffs filed a motion today seeking the removal of such redactions from the documents already produced and those the Defendant has yet to produce.  While no date is set for the motion it is expected to be heard shortly.

Additional information on the Huronia Regional Centre class action can be found on the Koskie Minsky  LLP website here.  Legal Counsel Koskie Minsky LLP – See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

– See more at: http://www.institutionalsurvivors.com/background/huronia/#sthash.ctTmZn4L.dpuf

Source: http://www.institutionalsurvivors.com/background/huronia/

The story in The Star, September 17, 2013: http://www.thestar.com/news/gta/2013/09/17/former_residents_settle_huronia_lawsuit_for_35m.html

Nutritional Experiments on Aboriginal Peoples in the News

As a follow-up to the previous post, “Hungry aboriginal kids, adults were subject of nutritional experiments“, here is some coverage of the events through the Toronto Star and CBC.  Article highlights are as follows.

After World War II, the Canadian government subjected aboriginal children and adults to nutritional experiments without their consent.  Many of these experiments were conducted in order to gather information about what the human body needs in terms of vitamins and nutrition.  It resulted in lack of dental care for Aboriginal peoples as well, in order to use gum health as an undistorted measuring tool for scientists (Livingstone, Toronto Star).

Justice Murray Sinclair, chair of the Truth and Reconciliation Commission, states in the Toronto Star that

“This discovery, it’s indicative of the attitude toward aboriginals,” Sinclair said. “They thought aboriginals shouldn’t be consulted and their consent shouldn’t be asked for. They looked at it as a right to do what they wanted then.” (Sinclair, July 21 2013)

It is likely that even at the time, these experiments were seen as ethically dubious (perhaps especially after the atrocities of World War II), and therefore probably why Ian Mosby, the post-doctorate from the University of Guelph, whose research brought these policies to life, uncovered only “vague references to studies conducted on ‘Indians'” while researching the development of health policy for a different project (Livingstone, Toronto Star).

Mosby elaborates, again suggesting the classification of Aboriginals as less than other people,

“I think they really did think they were helping people. Whether they thought they were helping the people that were actually involved in the studies — that’s a different question.” (Mosby, July 21 2013)

The CBC provides archival material from via historian James Daschuk, of a 1946 report of the lives of First Nations in Northern Manitoba.

1946 Report: Medical survey of nutrition among the Northern Manitoba Indians

You can read the full articles through the links below:

Toronto Star: http://www.thestar.com/news/canada/2013/07/16/hungry_aboriginal_kids_used_unwittingly_in_nutrition_experiments_researcher_says.html

CBC: http://www.cbc.ca/thecurrent/episode/2013/07/18/starvation-politics-aboriginal-nutrition-experiments-in-canada/

Eugenic sterilization NOW

courtesy of Miroslava Chavez-Garcia and from The Modesto Bee:

Female inmates sterilized in California prisons without approval

Published: July 7, 2013 Updated 8 hours ago

http://www.modbee.com/2013/07/07/2796548/female-inmates-sterilized-in-california.html

Tommy Douglas, young eugenicist

from The National Post, by Michael Shevell

This NP article is itself taken from a longer article in the January 2012 issue of the Canadian Journal of Neurological Sciences.

Though bespectacled and slight of build, Tommy Douglas is a giant of 20th Century Canadian history. His iconic, indeed mythic, status within the Canadian historical landscape is exemplified by his selection, in 2004, as “The Greatest Canadian” in a CBC-mandated competition above such luminaries as former Prime Ministers Pierre Elliot Trudeau and Lester Bowles Pearson, scientist Frederick Banting, and hockey great Wayne Gretzky. This honour reflects Douglas’ role as the “father” of Canadian Medicare, which has emerged, for better or worse, as a defining feature of a Canadian national identity.

Medicare has in effect emerged as a statement of national values. Values that include compassion, fairness, tolerance and equality; values that are not selectively applied, but are extended to embrace even the most vulnerable of Canadians.

Eugenics, by contrast, concerns itself at its most fundamental level with the selective breeding of humanity to improve the human species. At a practical level, eugenics in the 20th century involved the removal from the gene pool by various means those classes of individuals considered “inferior stock,” whose deficits had an inherited basis that was immutable for future generations. These classes included those suffering from mental illness, intellectual disability or what was characterized as social diseases (e.g, alcoholism, delinquency).

The broad principles of universal-access medicare contradict those that can be utilized to justify the practice of eugenics. It would be paradoxical for an individual to support both. Yet Tommy Douglas did so with moral persuasion. Careful analysis of this contradiction reveals with hindsight further paradoxes that merit consideration. … read more

Carl Elliott on Human Subjects and Big Pharma

from the NYT, July 28th, an Op-Ed piece by bioethicist Carl Elliott:

LAST month, the Archives of Internal Medicine published a scathing reassessment of a 12-year-old research study of Neurontin, a seizure drug made by Pfizer. The study, which had included more than 2,700 subjects and was carried out by Parke-Davis (now part of Pfizer), was notable for how poorly it was conducted. The investigators were inexperienced and untrained, and the design of the study was so flawed it generated few if any useful conclusions. Even more alarming, 11 patients in the study died and 73 more experienced “serious adverse events.” Yet there have been few headlines, no demands for sanctions or apologies, no national bioethics commissions pledging to investigate. Why not?

Here is the complete article.