Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son’s life? His future? Your “new era” means that I actually have to ask these questions. Your “new era” is nothing short of immoral. If you allow it to continue unchecked, so too are both of you. Rachel Notley

November 6, 2018

https://featbc.org/discussions-board/reply/2659/


Lou Arab

Member

Dear FEAT Members,

My wife wrote an excellent letter to Gordon Hogg and Christy Clark, with copies to all the MLAs and the media. I want to share it here. In another posting, I will post the unbelieveable response from one Liberal MLA.

Lou Arab (Ethan’s Dad)

—————-

I am the mother of a beautiful blonde three year old boy. I want you to imagine yourself , going through what I have gone through in the last two and a half years.

You wake up every morning and hug your six month old baby. You marvel at his beauty. You make plans for his future. You bask in his smile. You take your baby to a place with one or two other children the same age. You stand back and smile as they crawl around and over eachother, exploring, playing. He looks back at you with a smile, just to check that you’re still there. You’re so proud. A few months later, it’s his first birthday party. Your baby’s beauty has increased tenfold. You didn’t think it was possible. Two of the other babies there are walking. They laugh and look at eachother. A third one, not quite walking, declares “mama!” and crawls toward her mother. Your baby stares into space, lost in thought. The birthday cake arrives. Your baby desolves into frightened tears. The cake is taken away. You try to interest your baby in the other children. The tears increase. A bad day you think to yourself. You feel your throat tighten. Six months later. Still no words from your child. He’s just started to walk. You’ve been to see your family doctor. “Everyone develops at their own pace” you’re told. You demand an appointment with another doctor. An eyebrow is raised. You’re told to come back in another six months. A speech therapist tells you that your baby is “a little behind”. You go back to your doctor. You demand a referral, and then another. You are desperate. Finally after six months of telling you that “there’s nothing to worry about”, suddenly the collective opinion changes. You are told that you child is “probably autistic”. You’re forced to wait another six months to get the “formal” diagnosis. You need that so that you can get help for your child. You grieve. You cry. You don’t sleep. Your beautiful child continues on, unsuspecting, in his world. You cry some more…alot more. Then you “get busy”. Something must be done. You read everything you can find. You discover that something CAN be done. You hear that the new government promised treatment. The deputy premier, a new mother herself, personally made a public promise during the campaign. You thank God for your timing. You feel bad for those parents that came before you whose children were not able to get the treatment you’ve been promised. You wait. Two months, four months…the treatment gets put off again, and again. It will be coming soon you’re told. Then you are told that “a 30% cut will be made to the budget”. Tax breaks were more important. You look over at your beautiful child, just turned 3 years old. He looks up, he smiles. He returns to his odd little routine. He has no treatment.

Tax breaks are not more important. Anyone who says they are is immoral. They deserve to go through what we have gone through.

They probably won’t. Only 1 in 160 are autistic. The odds are on your side Christy. Do you deserve to enjoy the benefits of those odds? If it were just you, I would not be so sure. But your child has done nothing wrong. So your baby deserves to be healthy.

Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son’s life? His future?

Your “new era” means that I actually have to ask these questions. Your “new era” is nothing short of immoral. If you allow it to continue unchecked, so too are both of you.

Rachel Notley

 

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Let’s Talk About Access to Information in Alberta: Part One

November 5, 2018

https://ablawg.ca/2018/11/05/lets-talk-about-access-to-information-in-alberta-part-one/

Let’s Talk About Access to Information in Alberta: Part One

Posted on November 5, 2018 by Drew Yewchuk

By: Shaun Fluker and Drew Yewchuk

PDF Version: Let’s Talk About Access to Information in Alberta: Part One

Legislation Commented On: Freedom of Information and Protection of Privacy Act, RSA 2000, c F-25

The Faculty’s Public Interest Law Clinic handles a lot of inquiries from the community that engage with Alberta’s access to information legislation: the Freedom of Information and Protection of Privacy Act, RSA 2000, c F-25 (FOIP Act). Simply put, there is a high demand for the disclosure of information collected, produced and otherwise held by state officials. The Information and Privacy Commissioner, who serves as an officer of the Legislature (FOIP Act, s 45), is responsible for overseeing the administration of the FOIP Act with the assistance of the Office of the Information and Privacy Commissioner (OIPC). In its 2015-2016 and 2016-2017 reports to the Legislative Assembly the OIPC indicated the access to information process in Alberta is approaching a crisis. Since commencing operations in 2015, the Public Interest Law Clinic has developed some expertise on working within the FOIP Act, and we would agree the system needs some critical attention. This post summarizes our current observations in this regard and, as the title to this post suggests, we see this as the beginning of a longer conversation. In order to illustrate the process and some of the problems within it, we refer to a request for information filed by the Clinic in July 2017, which is still ongoing, with respect to a creative environmental sentence imposed on CN Rail (see here for details on the offence and the creative sentence).

Access to information legislation provides an interested person with a right to the disclosure of records in the control of government departments (FOIP Act, s 6(1)). This is a right in the Hohfeldian sense in that the legislation imposes a correlative duty on the part of a government department to disclose records to the interested person. However, this right to the disclosure of records is qualified by many provisions in the FOIP Act which limit the scope of the disclosure requirement. Generally speaking, these limiting provisions are directed at preventing the disclosure of records which may be harmful to a government body or have an adverse effect on the privacy interests of others noted in the records. In cases where there is a dispute over the extent of a right to disclosure, the OIPC serves as the initial dispute resolution mechanism.

The access to information process starts with a request for disclosure by an interested person to the targeted government department along with the prescribed $25 fee (Freedom of Information and Protection of Privacy Regulation, Alta Reg 186/2008, s 11 (FOIP Regulation)). The exact wording of a request is very important: Ask for too many records over a long period of time and your request will be expensive and delayed; ask for too little and you risk not getting the records you are seeking. In the CN Rail case we are looking for records pertaining to the development of the creative sentence, and thus our request for records was as follows:

I am requesting records pertaining to guidelines, policies (formal or informal), directives, instructions, notices, or internal communication (including emails) which address the use, format, structure and decision-making framework related to orders issued under section 234 of the Environmental Protection and Enhancement Act, RSA 2000 c E-12 (otherwise known as the creative environmental sentences). These records would have informed the actions of the Crown Prosecutor in the matter of R v Canadian National Railway Company which saw the sentence order signed on June 2, 2017 (For the time period of January 1, 2017 to July 12, 2017).

In the interest of promoting transparent government, one obvious structural problem with the access to information process under the FOIP Act is that the subject government department plays the dominant role in a response to the information request. These departments have developed several techniques to frustrate information requests: delay, excessive fees, and redactions.

Delay

The most common technique appears to be simple delay – not replying, or seeking multiple time extensions from the OIPC. Section 11 of the FOIP Act contemplates most requests being completed within 30 days:

11(1) The head of a public body must make every reasonable effort to respond to a request not later than 30 days after receiving it unless

(a) that time limit is extended under section 14, or

(b) the request has been transferred under section 15 to another public body.

Extensions can be taken under section 14 if there is a large number of records (section 14(1)(b)), time is needed to consult with another public body (section 14(1)(c)), or the record contains documents with third party information which that party opposes the release of 14(1)(d)). The OIPC 2016/2017 annual report illustrates the problem: the OIPC received 253 extension requests from public bodies in 2016-2017 and had 57 cases where an applicant made an access request and received no response within the legislated timelines (what the OIPC calls a ‘deemed refusal’). Of these 57 cases, 44 were requests to Alberta Justice or Alberta Environment and Parks (see the 2016/2017 annual report at pages 6-7).

None of the access to information requests filed by the Clinic have produced records within the 30-day time frame set out in section 11 of the FOIP Act. The three requests where the Clinic has received records have taken 125, 89, and 84 days respectively to be completed. Five of our requests which are still outstanding have been open for more than 100 days. The Clinic filed the CN rail request for information with Alberta Justice on July 12, 2017. We received partial disclosure on November 14, 2017 but for reasons set out below, to date we have only received 35 out of the 857 pages of material we were told are responsive to our request.

Excessive fees

The second technique used by government departments to frustrate the process is fees. The applicable legislative provisions governing fees are sections 11, 13, 14, and schedule 2 of the FOIP Regulation. A department can only charge fees where it estimates the cost of processing the request will exceed $150. Fees are estimated by valuing employee time at up to $6.75 per 1/4 hr (27$ an hour) to handle the record. The amount of time needed to handle a record will vary depending on the size and complexity of the request. Once a total fee estimate is tallied, the department requires the applicant to pay 50% of the estimate before proceeding to prepare the record. An applicant must accept the fee or modify the request within 20 days of receiving the fee estimate (FOIP Regulation, section 13(4)).  What this means in real terms is that where a request for information is estimated to take more than 5 ½ hours to process there will be a fee payment required of the requesting person before the request is processed by the department (The $150 fee threshold divided by the $27 per hour expense for time to prepare the record = 5.5 hours). This fee threshold is easily passed for requests that produce a large number of documents (counted in number of pages), and thus it is typical for a person seeking access to information to be presented with a bill in the hundreds or even thousands of dollars which must be accepted within a short time frame in order for their request to be processed. Keep in mind, this monetary amount must be paid in the absence of any knowledge on what the content of the responsive records will be and what redactions will be applied by the department (more on that below).

We have noticed that a significant portion of the fee estimate will be for ‘preparing and handling’ the record. A breakdown of the required fee for requests made by the Clinic which have exceeded the $150 threshold is set out below. Alberta Justice estimated the total fee at $1270.25 to process the Clinic’s request for information on the creative sentence in the CN Rail case (listed as FOIP D in the table below). In a letter dated July 28, 2017 Alberta Justice requested $635.13 to paid within 20 days in order to proceed with the request for records in the CN Rail case.

Locating the record Preparing and handling the record Printing, USB sticks, or postage Total estimated cost per FOIP

FOIP A $162.00 $48.60 – $210.60

FOIP B $162.00 $459.00 $36.00 $657.00

FOIP C $391.50 $720.00 – $1,111.50

FOIP D $189.00 $864.00 $215.25 $1,270.25

FOIP E $1,215.00 $1,311.75 – $2,526.75

FOIP F $72.00 $3,240.00 – $3,312.00

FOIP G $432.00 $3,240.00 – $3,672.00

Totals $2,623.5 $9.883.35 $251.25 $12,760.10

 

This table shows the extent to which preparing and handling the record dominates the basis for a fee requirement. At this juncture, it is important to keep in mind that so long as the request for information is in relation to a recent timeframe (i.e. not searching for archival materials) much of these records will be in an electronic format. There is a separate category for locating the records. So what sort of work is encompassed by ‘preparing and handling’ these electronic records?

Our observations from working within the FOIP Act suggest to us that the work involved in preparing and handling the record amounts primarily to the department redacting information from the records, in accordance with how the department reads the application of sections 16 to 29 of the FOIP Act. What this means for a person seeking access to information is that the legislation requires them to pay for the work it takes for department employees to remove information from the records sought. In other words, you pay the department to conceal the information you are seeking. In the CN Rail case, the Clinic was asked to pay $864 in order for Alberta Justice to fully redact 822 pages out of a complete record of 857 pages.

One option available to someone who would like to reduce or eliminate the fee requirement is to seek a fee waiver where the person can establish (1) they cannot afford the payment or for any other reason it is fair to excuse payment; or (2) the information sought relates to a matter of public interest, including the environment or public health or safety” (FOIP Act, section 93(4)). The interpretation given to these criteria for a fee waiver by government departments appears to vary. Some departments focus on whether the public would be ‘interested’ in a literal sense in the information sought, and how the applicant will provide that information to the public. Alberta Energy, for example, asks whether the disclosure will add to public research on the operations of government and whether the information will be useful in clarifying public understanding of issues.

More typically, a government department offers no guidance on how it will interpret the fee waiver criteria and thus a person seeking to obtain a fee waiver should look to OIPC decisions for guidance on what to submit in their waiver application. A helpful decision to look in relation to interpreting section 93(4) of the FOIP Act is Order F2014-11 (Re), 2014 CanLII 8570 (AB OIPC) at paragraphs 22-23:

Will the records contribute to the public understanding of, or to debate on or resolution of, a matter or issue that is of concern to the public or a sector of the public, or that would be, if the public knew about it? The following may be relevant:

Have others besides the applicant sought or expressed an interest in the records?

Are there other indicators that the public has or would have an interest in the records?

Is the applicant motivated by commercial or other private interests or purposes, or by a concern on behalf of the public, or a sector of the public? The following may be relevant:

Do the records relate to a conflict between the applicant and government?

What is the likelihood the applicant will disseminate the contents of the records?

If the records are about the process or functioning of government, will they contribute to open, transparent and accountable government? The following may be relevant:

Do the records contain information that will show how the Government of Alberta or a public body reached or will reach a decision?

Are the records desirable for the purpose of subjecting the activities of the Government of Alberta or a public body to scrutiny?

Will the records shed light on an activity of the Government of Alberta or a public body that have been called into question?

In the CN Rail request for information, the Clinic requested a fee waiver by making submissions based on the guidance set out in this OIPC decision. Alberta Justice granted the request, and waived the stated fee of $1270.25. However, Alberta Justice did so without reasons. The explanation we received for our successful fee waiver application was as follows: “After reviewing your request for a fee waiver and Section 93(4) of the FOIP Act; in this instance Alberta Justice decided to commence processing your request and the fee for processing your request has been waived.” Of course, without reasons it is not possible to know which of our submissions on the waiver request was persuasive and thus difficult to gain any institutional knowledge for future applications.

Redactions and More Delay

The third, and clearly most effective, method used by government departments to frustrate the access to information process is to redact as much information from the disclosed record as is allowable under the exceptions to disclosure under sections 16 to 29 of the FOIP Act. As we mentioned above, in the CN Rail case Alberta Justice fully redacted 822 of the 857 pages in the pages responsive to the Clinic’s request. Of the 35 pages which were not fully redacted, 13 pages were simply copies of email correspondence that had been sent by Clinic staff to obtain information from the Crown on the creative sentence without resorting to an access to information request under the FOIP Act. In other words, much of the records we received were simply copies of our own emails. In light of this result, we were glad to have been granted a fee waiver. Otherwise, we would have paid hundreds of dollars to receive copies of our own emails!

Section 65 of the FOIP Act provides that an applicant can request a review by the OIPC of the department’s redactions from the record. A review introduces an incredible amount of delay: the OIPC expects the delay to be 6 to 8 weeks for the Office to decide if it will investigate the matter and another 9 months to investigate or mediate the complaint. If the process leads to an adjudicative inquiry by the Commissioner, you should expect the entire process to take 18 months or more. This is remarkable given that section 69(6) of the FOIP Act suggests an intention by the Legislature that a review will take 90 days or less. These timeframes for a review by the OIPC are in addition to whatever amount of time has elapsed before making the request for a review. In the CN Rail case, 14 months passed since the initial FOIP request before we were invited to seek a review by the OIPC. That process is ongoing.

These issues are real barriers to realizing access to information under the FOIP Act. What is truly disappointing is that they are widely acknowledged and known to be problematic, as set out by the Centre for Law and Democracy in its 2012 release of an Analysis of Access to Information Legislation in Canadian Jurisdictions. None of what we have set out in this post will be news to anyone who regularly uses the access to information process under the FOIP Act. The purpose of the FOIP Act, to grant a right of access to government records (section 2(a)) and facilitate transparency as a means for Albertans to hold their government accountable, seems completely frustrated by delay, excessive fees, and redactions.

This post may be cited as: Shaun Fluker and Drew Yewchuk, “Let’s Talk About Access to Information in Alberta: Part One” (November 6, 2018), online: ABlawg, http://ablawg.ca/wp-content/uploads/2018/11/Blog_SF_DY_Lets_talk_about_FOIP_Nov2018.pdf

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The postcode lottery in our inquest system

October 13, 2018

https://www.leighday.co.uk/Blog/August/The-postcode-lottery-in-our-inquest-system

The postcode lottery in our inquest system

Merry Varney, partner in the human rights department, discusses the differences that can occur at inquests due to the wide discretion given to coroners

Coroner

Related Areas of Practice:

Merry is a partner in the human rights department.  She has a particular interest in using the law to protect children, vulnerable adults and patients.  She tweets as @merryvarney
I spent most of July in two different coroners’ courts instructed by the bereaved families of two young women, Sophie Payne and Zoe Watts, who died while inpatients, detained under the Mental Health Act in general adult psychiatric hospitals, one in London, one just outside.

Both inquests took place with a jury and both juries returned conclusions that included failures in the care and treatment provided to the deceased. Both involved the coroners obtaining independent expert evidence and both coroners accepted their investigations must address not just how the deceased died, but also the circumstances of the death.

The similarities end there and the differences in their approaches highlight the postcode lottery of our inquest system and the wide discretion coroners have, which leave bereaved families with considerable uncertainty about how their loved one’s death will be investigated.

The need for a national system has long been recognised, and it was deeply disappointing to see the appeal process for coroners’ decisions,  set out in the Coroners & Justice Act 2009, withdrawn before it was even brought into force. This leaves bereaved families with judicial review is as their only option to challenge coroners’ decisions, and this can be an expensive and risky process in which coroners are given a wide margin of discretion. You only have to have a skim read of Chief Coroner’s Law Sheet (no.5) on the discretion of coroners to see that from scope to procedural decisions to what is left for a jury to decide, the width of the discretion is very broad indeed.

So what were the differences?

As aforementioned, independent experts were instructed by both coroners. In one the coroner asked the Interested Persons (which includes my clients) for views on the identity of an appropriate expert and provided the opportunity for questions to be put to the expert in advance. This step assisted greatly in ensuring the family were at the heart of the process. The other coroner went ahead and instructed experts without any recourse to the bereaved family.

In one inquest the coroner asked witnesses who had already provided a statement to read relevant sections out, and then to answer questions. This allowed the jury to hear clearly, from the witness directly, what the witness was saying happened. The other coroner questioned witnesses by summarising the statements prepared in advance and asking the witness to confirm what she said was accurate. This meant the coroner’s own interpretation on what had been written was added to the evidence, and considerable key information was contained in their question, rather than the jury and the bereaved family hearing it from the witness directly.

Still on witnesses (and bearing in mind that witness evidence in inquests is often crucial given its inquisitorial nature), one coroner directed that those under oath should, to avoid any concerns, ‘keep themselves to themselves’ during any short breaks during their evidence. The other simply said not to discuss their evidence or the case, but indicated it was acceptable to socialise with colleagues for example. Where trust is already very sparse, seeing witnesses chatting with their legal representatives/employer/colleagues (including other witnesses) can be very distressing for a bereaved family and the purpose of inquests allaying suspicion becomes a farce, albeit the latter  approach is well within a coroner’s broad discretion.

Finally on the topic of witnesses, one coroner decided that the jury should hear evidence from  ‘Trust management’ explaining all the actions taken since the death in their care to improve patient safety and services; the other felt such evidence should not be heard by the jury as it was not relevant to the circumstances of the death, but instead was only relevant to whether or not the coroner’s duty to make a Prevention of Future Deaths report was triggered.

The last difference to highlight goes to the heart of how a jury inquest is conducted: the jury bundle. In one inquest, the jury had no documents. The Interested Persons and their lawyers and the coroner had several files worth of medical records, policies and statements. Witnesses also had access to the documents. The jury had none; rather, they had to try and listen carefully to either witnesses reading sections out, or the content being contained in a question being put to a witness, and make notes to consider it during deliberations.

In the other inquest the jury had her progress notes, the observation chart from the day of her death and multiple policies which governed her care and treatment, and how the ward should be run. The jury had these key documents in front of them throughout, allowing them to more easily follow the witness evidence, and allowing more direct, clear questions to be put by the Interested Persons and the jury themselves.

I cannot explain these differences in any other way than the personal preference of each coroner, yet each decision has a fundamental impact on how an inquest proceeds and the experience of the bereaved family. The above is just a snapshot of the variety in decision making that occurs across the country in coroners’ courts. Within that variety are some very poor decisions and when combined with the unpredictability that variety also brings, the woeful nature of our postcode-based inquest system is clear to see.

Finding My Family – Velvet Martin

October 3, 2018

A few days ago, an elderly childhood friend of my late mother – Marguerite (who was born Hennessey, fostered by McLeod, married James Crystal, Bob Williamson; Ray Rideout, my dad) – shared the following image with me of my mom at age 21:

Look at my beautiful mother and my 2 eldest siblings. I can’t stop smiling!

💝 Helen and Patricia 💝

image1.jpeg

It is the first time I’ve ever glimpsed my own sisters! (The photo on the right is myself as a child.)

I’ve yet to find further identifying information. In total, I have 4 elder half siblings; Helen and Patricia born approximately 1944-1945 to Marguerite and a soldier named James Paul Crystal in Toronto.

The next girls, Brenda and Gloria Bonnie, were born to Marguerite and a man, Bob Williamson, of Toronto prior to 1955. *CAS had a file for Gloria Bonnie Williamson; however it was dated 2002 and neither phone nor address are current. I’m at a dead end.

Sisters… please find me. ❤️❤️❤️❤️

4D6839E1-7EEF-47D7-BABC-59AAEB11B3C5

Come take a walk with me

October 3, 2018

#DearMrsPremier #Alberta #SamanthasLaw

Dear Mrs. Premier,

Come take a walk with me

Let’s pretend we’re just two people 

Indigenous and equal

I’d like to ask you some questions

if we can speak honestly

What do you feel when you see 

all the homeless on the street?

Who do you pray for at night

before you go to sleep?

What do you feel when you look in the mirror?

Are you proud?

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the eye?

And tell me why?

Dear Mrs. Premier,

Were you a lonely girl?

Are you a lonely girl?

How can you say, no child is left behind?

We’re not dumb and we’re not blind

They’re all sitting in your Selves

When you pave the road to hell

What kind of mother would take another family’s rights away?

What kind of mother might betray a father’s child for being born disabled?

I can only imagine what the public at large might have to say

You’ve come a long way, from promises to investigate child Fatalities and PDD campaigns

How do you sleep while the rest of us cry?

How do you dream when Residential School and Institutional Victims barely survive?

How do you walk with your head held high?

Can you talk Reconciliation and even look me in the eye?

Let me tell you about hard work

Traumatized by a System that has killed your own child 

Holding the hands of families in court so they know they’re not alone

Battling our Government to end generational wrongs

Earning less than minimum wage while suffering from PTSD 

Let me tell you about hard work

Abandoning your home because savings are depleted

Let me tell you about hard work

Defending Autistic children confined to seclusion boxes

Let me tell you about hard work

Hard work, hard work, you don’t know nothing about hard work

Hard work, hard work

Extend your hand to the kohkums who offer generations of expertise

Why won’t you apologize by ending inhumane Policies?

Well-paid Ministers continue to ignore abhorrent legacies

Treating constituents who are vocal with scorn

While grass-roots groups work uncompensated to protect your unborn

Are you proud?

How do you sleep at night?

How do you walk with your head held high?

Dear Mrs. Premier,

We had such high hopes and were eager to believe in integral leadership, 

but clearly

You’ll never take a walk with me…

Hmmm, will you?

~~~~~~~~~~~~~~ VM

Inspired by “Dear Mr. President”

*Original Songwriters: Alicia Moore / William Mann

Dear Mr. President lyrics © Sony/ATV Music Publishing LLC, BMG Rights Management

Come take a walk with me

September 28, 2018

#DearMrsPremier #Alberta #SamanthasLaw

Velvet Martin:

Dear Mrs. Premier,

Come take a walk with me

Let’s pretend we’re just two people 

Indigenous and equal

I’d like to ask you some questions

if we can speak honestly

What do you feel when you see 

all the homeless on the street?

Who do you pray for at night

before you go to sleep?

What do you feel when you look in the mirror?

Are you proud?

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the eye?

And tell me why?

Dear Mrs. Premier,

Were you a lonely girl?

Are you a lonely girl?

How can you say, no child is left behind?

We’re not dumb and we’re not blind

They’re all sitting in your Selves

When you pave the road to hell

What kind of mother would take another family’s rights away?

What kind of mother might betray a father’s child for being born disabled?

I can only imagine what the public at large might have to say

You’ve come a long way, from promises to investigate child Fatalities and PDD campaigns

How do you sleep while the rest of us cry?

How do you dream when Residential School and Institutional Victims barely survive?

How do you walk with your head held high?

Can you talk Reconciliation and even look me in the eye?

Let me tell you about hard work

Traumatized by a System that has killed your own child 

Holding the hands of families in court so they know they’re not alone

Battling our Government to end generational wrongs

Earning less than minimum wage while suffering from PTSD 

Let me tell you about hard work

Abandoning your home because savings are depleted

Let me tell you about hard work

Defending Autistic children confined to seclusion boxes

Let me tell you about hard work

Hard work, hard work, you don’t know nothing about hard work

Hard work, hard work

Extend your hand to the kohkums who offer generations of expertise

Why won’t you apologize by ending inhumane Policies?

Well-paid Ministers continue to ignore abhorrent legacies

Treating constituents who are vocal with scorn

While grass-roots groups work uncompensated to protect your unborn

Are you proud?

How do you sleep at night?

How do you walk with your head held high?

Dear Mrs. Premier,

We had such high hopes and were eager to believe in integral leadership, 

but clearly

You’ll never take a walk with me…

Hmmm, will you?

~~~~~~~~~~~~~~ VM

Inspired by “Dear Mr. President”

*Original Songwriters: Alicia Moore / William Mann

Dear Mr. President lyrics © Sony/ATV Music Publishing LLC, BMG Rights Management

#DearMrsPremier #Alberta

September 28, 2018

NEW version dedicated to #Alberta

Dear Mrs. Premier,

Come take a walk with me

Let’s pretend we’re just two people 

Indigenous and equal

I’d like to ask you some questions

if we can speak honestly

What do you feel when you see 

all the homeless on the street?

Who do you pray for at night

before you go to sleep?

What do you feel when you look in the mirror?

Are you proud?

How do you sleep while the rest of us cry?

How do you dream when a mother has no chance to say goodbye?

How do you walk with your head held high?

Can you even look me in the eye?

And tell me why?

Dear Mrs. Premier,

Were you a lonely girl?

Are you a lonely girl?

How can you say, no child is left behind?

We’re not dumb and we’re not blind

They’re all sitting in your Selves

When you pave the road to hell

What kind of mother would take another family’s rights away?

What kind of mother might betray a father’s child for being born disabled?

I can only imagine what the public at large might have to say

You’ve come a long way, from promises to investigate child Fatalities and PDD campaigns

How do you sleep while the rest of us cry?

How do you dream when Residential School and Institutional Victims barely survive?

How do you walk with your head held high?

Can you talk Reconciliation and even look me in the eye?

Let me tell you about hard work

Traumatized by a System that has killed your own child 

Holding the hands of families in court so they know they’re not alone

Battling our Government to end generational wrongs

Earning less than minimum wage while suffering from PTSD 

Let me tell you about hard work

Abandoning your home because savings are depleted

Let me tell you about hard work

Defending Autistic children confined to seclusion boxes

Let me tell you about hard work

Hard work, hard work, you don’t know nothing about hard work

Hard work, hard work

Extend your hand to the kohkums who offer generations of expertise

Why won’t you apologize by ending inhumane Policies?

Well-paid Ministers continue to ignore abhorrent legacies

Treating constituents who are vocal with scorn

While grass-roots groups work uncompensated to protect your unborn

Are you proud?

How do you sleep at night?

How do you walk with your head held high?

Dear Mrs. Premier,

We had such high hopes and were eager to believe in integral leadership, 

but clearly

You’ll never take a walk with me…

Hmmm, will you?

~~~~~~~~~~~~~~ VM

Inspired by “Dear Mr. President”

*Original Songwriters: Alicia Moore / William Mann

Dear Mr. President lyrics © Sony/ATV Music Publishing LLC, BMG Rights Management

Advocacy 101 – A Basic Introduction by Terry Wiens

September 10, 2018

Advocacy 101 – A Basic Introduction

Advocacy 101 – A Basic Introduction

“Get up, stand up, stand up for your rights.  Get up, stand up, don’t give up the fight” – Bob Marley

 

I wrote a brief “rant” a couple of weeks ago regarding social justice.  I had a lot of feedback and a common theme was the request for steps on “how” to be a social justice warrior.  I have made a lot of attempts to capture the process on paper since then but was never satisfied with what I was writing.  It looked more like a plate of spaghetti than a coherent logical description.  I began to realize I couldn’t do it in one sitting.

It was like expecting a kindergarten student to have a grade 12 learning level.  I have spend close to 40 years fighting for social justice, learning, developing, adjusting, adapting and applying.  How do you take 40 years of experience and condense it down to an 800 to 1000 words article?  The reality is you don’t.  I cannot justifiably provide a comprehensive explanation to a process I have been learning for over 40 years.  However, due to the reasons listed below, I have to do something.  It’s not in my nature to turn my back on those who need some help.

In the past week I have had five families contact me looking for an advocate.  Families whose children have just entered the world of inclusion by starting schools.  Families that have spend the last five years being overwhelmed by the complexities of the world of special needs (hate that term but will use it for now).  Families who by their own admission hadn’t given any thought to terms like “social justice” prior to the crisis they now find themselves in through no fault of their own.  Families who admittedly held to the belief that there was a social safety net there to assist families in need.  Families who, in a minute of childbirth or a five minute medical emergency, entered a world totally alien to them.  Families who prior to the situation they now find themselves in had never realized just how lacking or confusing our system is.  So for those families I believe that a I can provide a simplified overview of the tools and language they are going to need to know.

There are two mains ways to pursue social justice and that is as an advocate or an activist.  These two terms have different meanings but shared values.  An advocate tends to focus on one issue, an activist challenges concepts.  That’s a very simplified overview but I don’t want to confuse this article by being exceptionally over-detailed.

However I do need to clarify the difference between a Charter Challenge (federal) and a human rightscomplaint (provincial).  A Charter challenge is a federal issue and usually focuses on protections laid out in the Canadian Charter of Rights and Freedoms.  That is a federal level process but may, as the need requires, be the final step following a provincial human rights complaint.  For the sake of this article I am going to focus on the provincial human rights complaint.

A provincial human rights complaint is just that, a process laid out in a specific way and often requires the assistance of an “advocate”.  Since it is considered a quasi-judicial process it can be very complicated and detail oriented which usually involves a lawyer or advocate.  I know that because I did my own in 2006 to a successful conclusion.  It wasn’t easy.

Each province has their own piece of human rights legislation that pertains to that jurisdiction.  Each province has their own Human Rights legislation so you do need to know which province you are dealing with.  You can’t make a BC complaint based on the Alberta Human Rights Act but you do need to #SpeakOut regardless of what province you are in.  Having rights does not guarantee they will be applied.  You are the oversight in your world for social justice which often demands fighting for those rights otherwise you lose them.  You always have a choice, be an advocate, an activist or a victim.

As an advocate I have five basic steps I look at.  A condensed overview doesn’t really do it justice however social justice is a complicated issue.  It is fluid which makes it very difficult to come to a conclusion.  A simple example would be “just because there is a ramp into the library doesn’t mean it is accessible to someone with a visual disability”.  So these are my five steps (I refer to them as the five “A”s of activism) and I will do my best to provide more in-depth descriptions in future articles but for the time being here goes:

  • Awareness – to solve a problem you first have to identify it as a problem.  Never take an issue or response from someone as a definitive.  That is just settling and “just settling” opens the door for the erosion of rights.
  • Analyze – review your awareness.  What is it impeding and where is the injustice?  You need to see it through your eyes, not someone else’s opinion.  Accepting someone else’s opinion as “fact” is, again, a form of settling.  Those who offered the opinion are not living your situation.
  •  Answer – what needs to be done?  What tools are available to you?  This may require some research but the problem will not solve itself.  If you are not prepared with logical information you are setting up to lose.  I tend to tell people I have advocated for that responses based on emotion will get them a couple of free tissues and a pat on the  back but logic with facts will get you solutions.
  • Allies – Who have you got on your side that understands the issues?  Tap into those, they don’t have to be friends (however that helps) but they do need to have some role in the issue (politicians, community leaders, organizations, etc).  People who can substantiate your call for social justice.  That is really where a good advocate comes in.  Good advocates have good networks.
  • Action – What is the remediation you are requesting?  Adherence to current policy, some type of reasonable accommodation based on current legislation or regulations, reversal of a previous decision, etc.  Know what you want correct and know the steps required for resolution.

Hope this helps…

 

"In the End, we will remember not the words of our enemies, but the silence of our friends".

Most Deaths Among Kids With Epilepsy Due to Infection

September 4, 2018

Most Deaths Among Kids With Epilepsy Due to Infection https://www.medscape.com/viewarticle/898291?nlid=123358_4562&src=wnl_dne_180620_mscpedit&uac=83396HN&impID=1662565&faf=1?src=soc_tw_share via @medscape

Most Deaths Among Kids With Epilepsy Due to Infection

Pauline Anderson

June 19, 2018

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LISBON, Portugal — Most children with epilepsy who die succumb to an infection during the winter months, preliminary results of a new UK study show.

The study also found that most of the mortality was among those who were male and aged 11 to 15 years.

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Because previous studies of mortality in children with epilepsy had design problems, “we wanted to provide some sort of evidence-based information for clinicians and families,” said Omar Abdel-Mannan, a pediatric neurology trainee in Great Ormond Street Hospital for Children, London, United Kingdom.

The study was presented at the Congress of the European Academy of Neurology (EAN) 2018.

Premature Death Risk

Epilepsy is the most common long-term disabling central nervous system condition, affecting over 6000 people in the United Kingdom, Abdel-Mannan told meeting delegates.

Children — and adults — with epilepsy face higher risk for premature death from multiple causes, including seizure complications (such as aspiration, suffocation, injury, and status epilepticus), underlying conditions (such as brain tumors), suicide, and sudden unexpected death in epilepsy (SUDEP).

Previous studies have shown serious deficiencies in care, but researchers believe this didn’t accurately reflect the picture of mortality among kids with epilepsy.

“We felt that a prospective active surveillance system was needed to estimate epilepsy mortality,” said Abdel-Mannan.

The researchers aimed to gather information across the United Kingdom over a 1-year period — from November 2016 to October 2017.

They used information from the British Pediatric Surveillance Unit (BPSU), a research unit that is part of UK Royal College of Pediatrics. Its case reporting system involves contacting every pediatrician in the United Kingdom and inquiring about various conditions, in this case mortality.

When clinicians report cases, the BPSU gets in touch with researchers, who then contact pediatricians to get information on individual patients through questionnaires.

The response rate from clinicians is about 94% to 95%, so the reporting system is highly reliable, said Abdel-Mannan.

For this study, pediatric mortality was defined as children dying between age 1 month and their 16th birthday, who were diagnosed with epilepsy, and had seizures or were receiving antiseizure medication during the last 5 years.

Although there were 131 case notifications, 20 were lost to follow-up, 14 were duplicates, and 9 didn’t meet inclusion criteria. This left 88 confirmed cases that were included in the analysis.

The deaths occurred throughout the year, with the greatest number in January and the fewest in August.

Almost 90% of reported cases came from England, with a handful from Wales, Ireland, and Scotland. But Abdel-Mannan believes some Scottish cases may have been missed “as the study was not fully rolled out” in that country.

The greatest proportion of children who died (46%) were aged 11 to 15 years. About 66% were male, and 70% were white, with South Asians representing the next biggest racial group.

Winter Spike

The most common cause of death was pneumonia or lower respiratory tract infection (14%) and sepsis (10%), which together made up a quarter of all cases. This, said Abdel-Mannan, “might explain the winter spike in deaths.”

Of the 72 cases with relevant information, just over a third of deaths were due to Dravet syndrome, Lennox-Gastaut syndrome, or other epilepsy syndrome.

Almost 90% of children had some developmental delay, and more than half (52%) experienced generalized tonic-clonic seizures.

“More interestingly,” said Abdel-Mannan, was that 23% of the children had no seizures at the time of death.

There were 10 cases of probable or definite SUDEP, although the true number may be higher, said Abdel-Mannan. “We think there may have been a few more among the large number of ‘unknown’ deaths.”

Sodium valproate and levetiracetam were the most frequently prescribed antiepileptic drugs (AEDs). About 90% of the children were receiving at least one AED, although 10% died not taking any medication, said Abdel-Mannan.

Discussions with the family around the issues of death or SUDEP had taken place in more than half the cases.

Only 36% of the children had a pediatric neurologist actively involved in their care, although about half had a general pediatrician with an interest in neurology managing their care.

Gathering mortality data for children with epilepsy is challenging, noted Abdel-Mannan. “As you can imagine, there is a lot of sensitivity around this topic.”

He noted that reporting is often delayed. Sometimes the reporting clinician is not the one looking after the charts, “so we have to sort of go find the primary clinician to get the information.”

As well, postmortem results are often not available at the time of reporting, and death certificate information may be missing, he said.

Complex Patients

Session co-chair Ivan Rektor, MD, professor of neurology, Masaryk University Brno, Czech Republic, commented that 24% “is an unusually high number” of children who died of sepsis or pneumonia.

Abdel-Mannan explained that these are complex epileptic patients with multiple comorbidities. “They are not a cohort of healthy children.”

Rektor also wondered if the same high risk for sepsis occurred in adolescents as in younger kids.

The lowest number of deaths was in patients younger than 1 year, and the rate among those 5 to 10 and 11 to 15 years “was not that different,” said Abdel-Mannan.

“It would be interesting to go back and look to see if this was correlated with sepsis and pneumonia cases.”

Asked to provide more details on the SUDEP cases, Abdel-Mannan said most of these deaths occurred at home or in a hospice and were unwitnessed. As well, most involved patients with one of the underlying syndromes, such as Dravet.

When asked if he has any suggestions for prevention measures, Abdel-Mannan said that “there is talk in the pediatric literature” about devices that capture seizures, as well as recommendations to sleep next to a partner.

“This is something we want to look at in future,” said Abdel-Mannan.

The study received funding from SUDEP Action.  

Congress of the European Academy of Neurology (EAN) 2018. Oral session O212. Presented June 17, 2018.

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Alberta Premier’s Council on the Status of Persons with Disabilities – Members

September 4, 2018

https://www.alberta.ca/premiers-council-members.aspx

Premier’s Council on the Status of Persons with Disabilities – Members

Up to 15 volunteer council members, with a broad knowledge of diverse disability issues, represent regions across Alberta.

Council Members

Sheila Serup – Chair

Bio picture of Sheila Serup

Sheila Serup of Calgary is an Accredited Business Communicator. She has worked on advancing understanding and awareness of disability issues through National Access Awareness Week and active involvement with the Canadian Hard of Hearing Association. Sheila has served as a member of the Premier’s Council on the Status of Persons with Disabilities since 2013 and as Acting Chair since January 2017. She also brings a lived experience as someone who has a hearing loss. Contact Sheila

Marie Renaud – Deputy Chair

Bio picture of Marie Renaud

Marie Renaud, MLA for St. Albert, currently serves as a member of the Standing Committees on Public Accounts. Previously, she served as a member of the Alberta Heritage Savings Trust Fund and the Select Special Ethics and Accountability Committee. Marie also worked for 15 years as the executive director of Lo-Se-Ca Foundation, a non-profit organization that provides residential and day supports to adults with developmental disabilities. She holds a university certificate in counselling women from the women’s and gender studies department at the University of Alberta and a diploma in community disability studies from MacEwan University. In 2014, Marie was named one of Edmonton’s top 100 women in business by the University of Alberta’s Wanderer magazine. Contact Marie

Cheryl Cunningham-Burns

Bio picture of Cheryl Cunningham-Burns

Cheryl Cunningham-Burns of High Level has a Master in Social Work and many years’ experience in social work practice including Fetal Alcohol Spectrum Disorder diagnostics clinics, community and forensic mental health, and disability service coordination. Cheryl works compassionately with the socio-economically disadvantaged and with persons with disabilities, advocating for access and necessary supports and services. She brings to the Council knowledge and awareness of Alberta’s northern communities and their unique needs and strengths. Contact Cheryl

Alison Cutknife

Bio picture of Alison Cutknife

Alison Cutknife of Maskwacis is an Anishinaabekwe of the Aamjiwnaang First Nation (Ontario), which is a member of the Samson Cree First Nation. One of her daughters has cerebral palsy. Over the past 25 years, Alison has been an active advocate for families of children with disabilities who live on reserves. Her work includes developing the first Early Childhood Intervention Program on reserve, establishing an annual community National Child Day event and conducting culturally appropriate indigenous parent programs. Teaching is Alison’s profession and lifelong learning is her pastime. Contact Alison

Shino Nakane

Bio picture of Shino Nakane

Shino Nakane of Calgary has been a volunteer board member for a variety of organizations over the past decade. As a mother of a son with a developmental disability, she has a passion for helping non-profit groups that strive to meet the unique needs of families like hers. Her work experience includes communications, advocacy, research, stakeholder engagement and project management. Contact Shino

Ann Nicol

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Ann Nicol of Red Deer has more than 30 years of experience in the human services field with the City of Calgary, Government of Alberta and non-profit sectors throughout Alberta. She has worked directly with, and on behalf of youth, children, families and adults with disabilities. This has included roles with Alberta Social Services, the Alberta Council of Disability Services and the Office of the Children’s Advocate. She has also assisted with community initiatives to establish mental health support groups in rural central Alberta and networks for youth in government care. Ann holds bachelor’s and master’s degrees in social work and received the Queens Diamond Jubilee medal for her community work. Contact Ann

Neil Pierce

Bio picture of Neil Pierce

Neil Pierce of Edmonton has served in leadership roles with Workers’ Compensation Boards of Ontario and North West Territories, the Canadian Paraplegic Association (Alberta), Alberta Paraplegic Foundation, Multiple Sclerosis Society of Alberta, Muscular Dystrophy Canada (Western Canada) and the Parkinson’s Association of Alberta. He helped develop programs that continue to benefit those with spinal cord injuries and other physical disabilities, including the Alberta Neurotrauma Initiative, the Champions Career Centre, the Way Forward MS Strategy and the Alberta MS Regional Research and Training Centre. Neil has received the Canadian Paraplegic Association’s Honourable Lois Hole Community Development Award, an Alberta Civil Trial Lawyers’ Association social justice award and the Council’s Gary McPherson Leadership Award. Contact Neil

Nabeel Ramji

Bio picture of Nabeel Ramji

Nabeel Ramji of Calgary lives with Cerebral Palsy and merged his unique personal and professional experience to found Accessibility for all Albertans. This initiative is helping real estate developers, architects and the public understand accessibility issues to ensure that new and existing public spaces are truly accessible for all citizens. Nabeel holds a bachelor of commerce in Finance (Honours with Distinction) and has been a member of the City of Calgary Advisory Committee on Accessibility for the past 3 years. Recently, the federal government appointed him as local champion to provide input into its accessibility law. Nabeel has also received the Council’s Award of Excellence for Public Awareness. Contact Nabeel

Inara Samoylove

Bio picture of Inara Samoylove

Inara Samoylove of Calgary is originally from Tanzania. A mother of a severely disabled young adult, she has advocated for her son’s needs, from education to health care and everything in between. Inara is employed within the municipal government and has focused on asset management, cost management, technology initiatives and enterprise systems. She is a holistic thinker who believes in linking corporate vision to desired results by empowering people and using processes, procedures and technologies effectively. Inara is passionate about her continued involvement with initiatives for persons with disabilities and new immigrants. Contact Inara

Cathy Smith

Bio picture of Cathy Smith

Cathy Smith of Barrhead is the parent of a child with a rare disability known as Angelman Syndrome. In caring for her daughter, Cathy has furthered her education in a way that was both extremely challenging and far more rewarding than any educational institution could provide. Through their experience, she feels her family has become more understanding, giving and nurturing when it comes to those with special needs. Cathy’s has been inspired to give to others by her former work with Alberta Children’s Services and being part of a community that offers so much to persons with disabilities. Contact Cathy

Cam Tait

Bio picture of Cam Tait

Cam Tait of Edmonton is a columnist with the Edmonton Sun, the special project advisor for Challenge Insurance and the community content coordinator for the Oilers Entertainment Group. For 33 years, he was a reporter and columnist. Cam has cerebral palsy and has made connections with disability groups around the world through his writing, speaking, volunteerism and comedy. He wrote extensively about people with disabilities and spoke to countless groups on disability, volunteerism, and in 1995, he competed nationally in 1995 for Canada’s Funniest New Comic and in 2015 published his autobiography, “Disabled? Hell NO! I’m a Sit-Down Comic”. He has been a member of the Council since 2014 and is also a member of the Lieutenant Governor’s Circle on Mental Health and Addictions. Cam has honourary degrees from the Northern Alberta Institute of Technology and MacEwan University. Contact Cam

D. John te Linde

Bio picture of D. John te Linde

D. John te Linde of Calgary is a retired registered psychologist. He has published research articles, reports and book chapters on psychology, program evaluation, needs assessment, social planning and social policy. John has also served on local and national boards for organizations involved in education, social policy and community service. In addition to numerous academic scholarships, John was awarded post-doctoral fellowships from the Natural Sciences and Engineering Research Council of Canada and the University of Calgary. John held teaching positions at the University of Western Ontario and the University of Calgary before joining the City of Calgary in 1984. He retired in 2013. Contact John

Regan Treewater-Lipes

Bio picture of Regan Treewater-Lipes

Dr. Regan Treewater-Lipes of Edmonton has been legally blind since birth. Growing up visually impaired, Regan has learned to overcome the daily obstacles the legally blind face. She is fluent in English, Russian and Japanese and works as an instructor in the Department of English at MacEwan University. Regan is also a freelance author and holds a PhD in comparative literature from the University of Alberta. As an active community leader, she has organized events, initiatives and fundraisers. Previous work with people living with severe physical disabilities, cognitive and intellectual barriers, and moderate learning challenges has enhanced her commitment to make Alberta’s diverse communities accessible to all. Contact Regan

Darby Lee Young

Bio picture of Darby Lee Young

Darby Lee Young of Calgary is a former para-alpine ski racer who was born with mild cerebral palsy. She created Level Playing Field (LPF) in 2015 to mitigate the barriers people like her face every day. As a Principal Accessibility Strategist, Darby works to ensure spaces are universally accessible. Darby received the Calgary Stampede’s Western Legacy Award for Innovation for her work with LPF. As co-chair of the City of Calgary’s Advisory Committee on Accessibility, she spearheaded efforts to support inclusive workplaces, accessible services and usable facilities for everyone. Darby has volunteered with Hockey Canada since 2010 and at the 2010 Olympic and Paralympic Games. Contact Darby

Contact

To contact the Premier’s Council Secretariat:

Hours: 8:15 am to 4:30 pm (open Monday to Friday, closed statutory holidays)

Phone: 780-422-1095 (in Alberta)

Toll free: dial 310-0000 before the number

Email: pcspd@gov.ab.ca

Fax: 780-415-0097

Address:

Suite 1110, 10055 106 Street

Edmonton, Alberta T5J 2Y2