Archive for September, 2018

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

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#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

Gender neutral silhouette of a person, indicating no photo available for this user.

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

Foster parents of disabled children get far more benefits than birth families: study

September 4, 2018

Quebec foster parents of disabled children get far more benefits than birth families: study 

https://montreal.ctvnews.ca/quebec-foster-parents-of-disabled-children-get-far-more-benefits-than-birth-families-study-1.4008851

Quebec foster parents of disabled children get far more benefits than birth families: study

The Canadian Press 

Published Wednesday, July 11, 2018 10:41AM EDT 

Sleeping baby

Families that foster children with disabilities get paid 70 per cent more benefits by the government than a family that chooses to keep the kids in the home, according to a new study.

The survey by the Raymond Chabot Grant Thornton firm has gotten the attention of families of disabled kids, who are now demanding parity in benefits with foster families.

The economic analysist showed that birth families receive an average of $25,632 per year to care for a disabled child while a foster family receives $44,254.

These benefits come in the form of both cash and in various services and tax breaks, mostly from the provincial government but some from the federal level as well.

The RCGT study showed these benefits, which vary depending on the severity of a child’s disability, can vary between $14,400 and $36,863 for a birth family whole host families receive between $33,056 and $55,471 per year.

Hospitals caring for a disabled child can receive between $47,752 and $81,373, for an average of $64,563.

The study was conducted on behalf of the Pacho Star Peer Support Network of Parents of Children with Disabilities. According to network officials, there was already an idea that the disparity existed but the study showed it was much larger than previously though.

In 2016, the Couillard government created the supplement for handicapped children requiring exception care, but only a small minority of children with disabilities were eligible, due to a restrictive criteria. Of the 36,000 children recognized as disabled in Quebec, just under 4,000 parents asked for the supllmenet and only 1,634 obtained it.

The study was presented to Family Minister Luc Fortin in June. Fortin said he was sympathetic to the birth families but would not make a commitment towards parity.

Unreported child deaths lead to call for public inquiry (2013 Alberta)

September 4, 2018

Unreported child deaths lead to call for public inquiry

Investigation finds 145 children died in provincial care since 1999

https://www.cbc.ca/news/canada/edmonton/unreported-child-deaths-lead-to-call-for-public-inquiry-1.2439461
Human Services Minister Dave Hancock says before 2012 the government didn’t report deaths from natural causes, accidents or medical conditions.(CBC )

Alberta opposition parties called for a public inquiry into the deaths of children in provincial care on Monday after a media report concluded the government has been under-reporting the numbers.

A lengthy investigation by the Edmonton Journal concluded a total of 145 children died while in care since 1999 but the province only reported 56.

The report prompted both the Wildrose and Liberal parties to call for a public inquiry; the Alberta NDP wants the child advocate to publicly review the death of every child in care.

Wildrose leader Danielle Smith says an inquiry should be held so the public can hear what went wrong.

“We need to go through and have a public inquiry so we can find out what the real, actual number of deaths were, any of the recommendations that were related to those deaths and track whether or not it’s been implemented and understand what’s gone wrong with this system,” she said.

The number of child deaths was the main topic in question period on Monday.

“To the premier, even today you only report child deaths in care and not child deaths in protective services,” said Edmonton NDP MLA Rachel Notley. “How can Albertans possibly trust you?”

Liberal leader Raj Sherman also directed his questions to Redford.

“Why is your government trying to cover up the deaths of 145 children?” he asked.

A request by the opposition to hold an emergency debate on the deaths was rejected by Speaker Gene Zwozdesky.

Human Services Minister Dave Hancock says the discrepancy in the numbers comes from how deaths were reported.

“What wasn’t reported before were children who died of natural causes, of medical causes, or accidental deaths,” Hancock said.

“They still would have been reported to the medical examiner’s office and the medical examiner’s office would have determined whether or not there was a need to move forward. But those were the ones that were not included in the public annual reports of the department.”

Hancock says all deaths have been reported since new legislation was passed last year.

‘Blanket statement that means nothing”

Velvet Martin, the St. Albert mother whose disabled 13-year-old daughter Samantha died after spending most of her life in foster care, says she’s heard the same response from Hancock’s predecessors.

 

Velvet Martin’s disabled daughter Samantha died in December 2006 after spending most of her life in foster care. (CBC )

“That was the same reaction that was told to the public by [Janis] Tarchuk, by [Yvonne] Fritz, by every other minister that has gone before Dave Hancock and I’m sorry but that’s just not acceptable,” Martin said.

“It’s just a blanket statement that means nothing. Not to us who have lost our children’s lives.”

Samantha Martin was born with a chromosomal abnormality called Tetrasomy 18p. Her parents placed her in foster care on the advice of Alberta Childrens’ Services.

Martin was malnourished when she died and went for long periods of time without seeing a doctor. A social worker was supposed to see her every three months but sometimes 14 months would go by without a visit.

A fatality inquiry last year found that the system failed the young girl.

Velvet Martin had to go to court for the right to publicly discuss her daughter’s experience in the foster care system. Alberta legislation prohibits the identification of anyone under the care of Childrens’ Services and Martin believes these publication bans need to end.

Sevenn years after Samantha died, Martin says the loss is still very hard on her family.

“People are forever changed … you live like this for the rest of your life in a state of loss,” she said.

The Journal’s investigation followed a four-year legal fight with the province to get access to records under freedom of information laws.

The report lists youngsters who have died by hanging, malnutrition, hypothermia, head trauma, drowning and disease.