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".

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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

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.

MCFD Decision-making via Renee Miller

August 18, 2018

 

MCFD Decision-making via Renee Miller fb page, Against MCFD- Parents fighting for second chances

The Law Society lists as: reneeamiller@me.com

“Parents, some important news and updates from the Supreme Court about the judicial review of MCFD decision-making. I am a defence lawyer on Vancouver Island. I am not taking any new clients, but I know this information is valuable to you and so I share it with you here. The Supreme Court weighed in on an important issue yesterday (July 25, 2018) about the judicial review of MCFD decisions which has not been made previously available to parents.

Currently, any child, young adult, parent, or representative of any of those three may at any time request an administrative review of any decision, act or failure to act of the MCFD (social worker) that relates to a service to a child, young person, young adult or family member under s. 15 of the Child Family and Community Service Regulations. When you request this form of administrative review under s. 15 of the Regulations, the MCFD has 30 days to complete their report. The request for an administrative review can be made to your social worker directly (although I don’t recommend that option because the social workers may not be aware of their statutory obligations and delays beyond the 30 days can occur), or through the complaints line at 1-877-387-7027.

You do not need a lawyer in order to engage with this part of the MCFD administrative review. The complaints specialist on the other end of the phone is a social worker in another jurisdiction who will review the decision of the MCFD. The complaint specialist will ask you if you want a resolution or an administrative review. If you chose the resolution, you will not have exhausted your internal administrative review remedies and you will not be able to proceed to Supreme Court on a judicial review. I am not suggesting that a resolution may not be appropriate, and you are welcome to try that option first and if the outcome is unsatisfactory then follow-up again and ask for the administrative review under s. 15 of the CFCS Regulations.

I have requested administrative reviews for the following kinds of MCFD decisions: removal of a child from a non-consenting parent pursuant to a safety plan, the decision to remove First Nations children from their First Nations school and put them in public school absent the cultural consultation that was agreed to at mediation, the MCFD refusal to provide a second mediation to a client when the second mediation was promised in writing to that parent, imposition of a safety plan that resulted in the removal of a parent from the home when the MCFD had only a suspicion of possible future domestic violence, causing that family financial stress. Complaints could equally be made about MCFD decisions to move children between foster homes.

The MCFD Complaints Process brochure that is available at the Justice Access Centre and the MCFD offices tells parents that ineligible complaints include “a complaint about any matter that is currently before the court.” THIS IS NOT TRUE. All of the above examples I provided were for clients who had matters currently before the provincial court. The Supreme Court asked the MCFD to amend this publicly available information so that parents are aware of both their rights of administrative review, and then the option of judicial review in Supreme Court of MCFD decisions.

Parents will always receive a letter from the MCFD following the completion of an administrative review. In that letter the MCFD will suggest to you that if you don’t believe the MCFD has followed a fair process that you can request an external review through the Ombudsperson. This is misleading. The Ombudsperson has no authority to review decisions of the MCFD until your judicial review options in Supreme Court have been exhausted (see s. 11(1)(a) of the Ombudsperson Act.) Also, don’t try to get the Representative of Children and Youth to help you, they can’t review decisions of the MCFD absent critical injury or the death of a child (see s. 6(1)(c) of the Representative of Children and Youth Act).

Parents, when you are unhappy about the outcome of an administrative report, your next step is a judicial review of the original MCFD decision in Supreme Court. It will be nearly impossible for you to take this next step without assistance from counsel. In order to have the MCFD judicially reviewed in Supreme Court you will have to first ask for the Supreme Court to waive your $200.00 filling fees (the people I represent in criminal law never have to pay a filling fee to have the Supreme Court review their bail/sentence or conviction). I personally believe that it is a s. 7 Charter violation to ask a parent to have to pay a $200.00 filling fee to attempt to hold the MCFD accountable for their decision making.

The “Order to Waive Fees Package” is available on the Supreme Court website under Supreme Court Information Packages. You can take this information with you to the Justice Access Centre and a lawyer there can help you fill out the paperwork. You can fill in by hand the financial statement, the educational and employment history and work place skills portions. You will need to type out the Order to Waive fees portion (for the Court), and you will also need to attach a draft petition to your request to waive fees.

I will make sure that the Justice Access Centre has precedents to help you. If your lawyers need copies of any of those precedents please ask them to email me. The petition engages the involvement of the Attorney General, who then replaces the local Director counsel who normally represents the MCFD in provincial court. You submit the application to Waive Fees to the Registry and the Master will review your paperwork. It usually takes about two weeks for the Court to decide whether your fees will be waived. The registry will charge you $40.00 to notarize your affidavits, so I strongly encourage you to use the local Justice Access Centre offices. Legal Aid is in the process of starting specialized Child Apprehension offices on the island, and lawyers there will also be able to help you. The lawyers have been hired and those resources should be available to you soon.

The petition in Supreme Court challenges the ORIGINAL decision of the MCFD. It doesn’t matter how bad the administrative report may be, the Supreme Court presently believes that the review authority is immune from judicial review because the review authority can only make recommendations. The original MCFD decision itself is not a recommendation, and as long as your legal rights as a parent have been breached you will have a cause of action for judicial review against the MCFD in Supreme Court under the Judicial Review Procedures Act. In order for the Supreme Court to review the MCFD, you must have first completed the administrative review process under s. 15 of the CFCS Regulations. The Supreme Court will want to review the recommendations in that report.

I believe that judicial reviews of MCFD decision making are half the work of child protection law. Legal aid, however, believes that judicial review of MCFD decision making is currently beyond their funding mandate. That mandate may well change with the advent of the specialized CFCSA clinics that are due on the Island. I tell my clients that I will gladly pursue a review of the MCFD, but that the hours I have been given on the legal aid referral will be used entirely on the Supreme Court matter and you may or may not qualify to receive a second referral for the on-going provincial court CFCSA issues.

I hope this is a helpful overview of the full MCFD review process. Please know I am never on Facebook and if I don’t reply to you it is not because my heart does not go out to you for the sheer enormity of the task ahead of you. I believe that legal reform must happen to permit parents an easier avenue of judicial review of MCFD decisions. The provincial court is a statutory court with limited ability to review most day-to-day decisions of the MCFD. Only the Supreme Court currently holds that jurisdiction. There is a great deal the government can and should do to help parents review the decisions of the MCFD. This information is province specific, but no doubt the principles are the same in other provinces.”

‪First Biomarker Evidence Autism Is Linked to DDT https://www.medscape.com/viewarticle/900776?nlid=124448_3901&src=wnl_newsalrt_180816_MSCPEDIT&uac=83396HN&impID=1713753&faf=1?src=soc_tw_share via @medscape‬

August 17, 2018

First Biomarker Evidence Autism Is Linked to DDT https://www.medscape.com/viewarticle/900776?nlid=124448_3901&src=wnl_newsalrt_180816_MSCPEDIT&uac=83396HN&impID=1713753&faf=1?src=soc_tw_share via @medscape

First Biomarker Evidence Autism Is Linked to DDT

Megan Brooks

DISCLOSURES

August 16, 2018

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Elevated levels of a dichlorodiphenyltrichloroethane (DDT) metabolite in pregnant women provide the first biomarker evidence that the banned insecticide is implicated in autism in children, new research shows.

Dr Alan Brown

“This study provides the first evidence, using a marker of an insecticide in the blood, that a pregnant mother’s exposure to this organic pollutant is related to an increased risk of autism in her offspring. Previous studies were based, for example, on proximity to sites that were contaminated with these pollutants,” lead investigator Alan S. Brown, MD, MPH, professor of epidemiology at Columbia University’s Mailman School of Public Health and of psychiatry at Columbia University Medical Center in New York City, told Medscape Medical News.

“The study,” he said, “offers potential implications for understanding a pathway regarding how autism might develop from a prenatal exposure and could have policy implications for public health regarding testing for, and minimizing exposure to, environmental pollutants.”

The study was published online August 16 in the American Journal of Psychiatry.

Autism Trigger?

DDT and other organic pollutants were widely banned in many countries decades ago, but they persist in the food chain, leading to continuous exposure among populations. The chemicals transfer across the placenta, resulting in potential prenatal exposure.

Using the Finnish Prenatal Study of Autism, a national birth cohort study, the researchers identified 778 children with autism born between 1987 and 2005 and a matched control group. Maternal serum specimens from early pregnancy were assayed for levels DDE (p,p’-dichlorodiphenyl dichloroethylene), a breakdown product of DDT.

The odds of autism were nearly one third higher among offspring of mother’s with DDE levels that were in the highest 75th percentile, after adjusting for maternal age, parity, and history of psychiatric disorders (odds ratio [OR], 1.32; 95% confidence interval [CI], 1.02 – 1.71; P = .03).

The odds of autism with intellectual disability were increased by greater than twofold with maternal DDE levels higher than this threshold (OR, 2.21; 95% CI, 1.32 – 3.69; P = .002). There was no association between total maternal levels of polychlorinated biphenyls (PCBs) and autism.

Along with genetic and other environmental factors, our findings suggest that prenatal exposure to the DDT toxin may be a trigger for autism. Dr Alan Brown

These findings “provide the first biomarker-based evidence that maternal exposure to insecticides is associated with autism among offspring,” the investigators write.

“We think of these chemicals in the past tense, relegated to a long-gone era of dangerous twentieth-century toxins. Unfortunately, they are still present in the environment and are in our blood and tissues. In pregnant women, they are passed along to the developing fetus. Along with genetic and other environmental factors, our findings suggest that prenatal exposure to the DDT toxin may be a trigger for autism,” Brown said in a news release.

Important Study, Concerning Findings

Commenting on the findings for Medscape Medical News, Benjamin Yerys, PhD, of the Department of Child and Adolescent Psychiatry and Behavioral Sciences and the Center for Autism Research, Children’s Hospital of Philadelphia, said this study is important because it addresses the question of whether a specific insecticide chemical increases the risk that a child will have autism.

In addition, he said the study was meticulous.

“The investigators measured the chemical directly from blood given by mothers when they were pregnant, and they controlled for other risk factors that increase risk for autism, including parents’ age and their own history of having a psychiatric illness. This has never been done before at such a large scale (~1500 people),” said Yerys.

“The findings raise concern that specific chemicals that were used in insecticides over 30 years ago may still exist in our food chain today and they may add risk for a child to develop autism,” said Yerys.

He noted that other studies using slightly different methods to measure the insecticide exposure in mothers and smaller samples have had different results.

“These mixed findings suggest we still have much to learn about how the insecticide exposure is adding risk, and if it adds risk for all people or only some people. We also do not have a great understanding of what mothers can do to reduce or prevent the risk that is added from insecticide exposure. Therefore, it is too early to make recommendations about how to change prenatal care or screening,” said Yerys.

“We do not know if a mother must have a specific genetic or biological makeup that makes her body more susceptible or resilient to the insecticide toxin. So this insecticide toxin may add risk for a specific set of women but not others,” he added.

The study was supported by the National Institute of Environmental Health Sciences. The authors and Dr Yerys have disclosed no relevant financial relationships.

Am J Psychiatry. Published online August 16, 2018. Abstract

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The Evolution of Safe Transport Systems for Infants, Children and Maternal Patients in Canada- A Journey to Excellence

August 2, 2018

 https://www.blog.caphc.org/blog/2018/7/30/the-evolution-of-safe-transport-systems-for-infants-children-and-maternal-patients-in-canada-a-journey-to-excellence

The Evolution of Safe Transport Systems for Infants, Children and Maternal Patients in Canada- A Journey to Excellence

Submitted by: 

Dr. Allan de Caen, Pediatric Intensive Care Consultant and Clinical Professor of Pediatrics at the Stollery Children’s Hospital / University of Alberta

Kate Mahon, Executive Director of the Trauma Association of Canada

Not all Canadian infants and children have immediate access to tertiary level care, due in part to Canada’s regionalization of pediatric-subspecialty care in the last 40 years and how regional health care is resourced. This means that efficient transfer of critically ill and injured infants and children over the long distances between referral hospitals and accepting tertiary care pediatric centers has become more and more necessary.

Many medically-fragile infants and children are often transported by health care teams that are expert in adult transport services but are often limited in their training and experience in neonatal and pediatric acute care. Challenges have existed for these health care teams in providing a consistent and adequate level of neonatal and pediatric acute care to those infants and children being moved between Canadian health care facilities.

The challenges are amplified when the tools and vehicles to safely transport these patients are few and far between.

Kate Mahon, Executive Director of the Trauma Association of Canada, paints a vivid picture as she recounts working as a PICU nurse at the IWK Health Centre in Halifax, Nova Scotia in 1982.

If a critically ill child needed to be transported to the IWK, our first call would be to the Canadian Armed Forces Air Search and Rescue Squadron (located in Greenwood, NS or Summerside, PEI). If available, a Sea King Helicopter or C-130 Hercules aircraft would be dispatched with the caveat, “if we get a call of a ship in distress you will be diverted with us in that Mission”. In such a large aircraft, our neonatal team would be harnessed in, so they would not fall over in flight as we tended to our patients.

In a scenario where neither of these aircraft were available, we had to “shop around” to find a private ambulance service or even private transport helicopters shuttling workers to and from oil rigs to assist in the transport. Given that most of these private services had no specialized pediatric critical care experience, an extra stop would be made to pick up a member of our team to ensure appropriate care was delivered to the paediatric patient on-route.

These challenges and barriers continued to plague the neonatal and paediatric transport field for years.

At a national symposium entitled “Transport Systems: Moving our Children across Systems – Challenges, Barriers and Enablers,” held at CAPHC’s 2008 Annual Conference in Edmonton, delegates identified the need to develop national standards for the inter-facility transport of critically ill newborns, children and youth. At the time there were no Canadian standards to guide the safe and competent care of infants and children during transport.

As a result of that session, CAPHC, later that year established a National Transport Systems Steering Committee comprised of multidisciplinary experts from across the country that began to address this issue. Determined to raise the bar, work by this group resulted in the establishment of a tool that would drive the education standards for health care providers involved in the interfacility transport – Competencies Profile-Interfacility Critical Care Transport of Maternal, Neonatal, and Paediatric Patients.

The group also lobbied Accreditation Canada to revise their EMS standards to incorporate the minimum standard of care that one should expect for the transport of acutely ill infants and children when being moved between Canadian health care facilities, citing the CAPHC work as a reference. The result was “Accreditation Canada EMS and Interfacility Transport Standards” which outlines the minimum standard for air and ground ambulance and interfacility (emergent and non-emergent) transport of infants, children (and adults).

Today, this national working group continues to work together to resolve educational and equipment challenges that are faced by transport teams while willingly sharing solutions and innovations in moving acutely ill infants and children (and maternal patients) between health care facilities across Canada.

Death Rates From Liver Disease Mount Across Much of US

July 20, 2018

Death Rates From Liver Disease Mount Across Much of US

https://www.medscape.com/viewarticle/899488?nlid=123949_4562&src=wnl_dne_180720_mscpedit&uac=83396HN&impID=1690097&faf=1

Pam Harrison

July 18, 2018

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Deaths from liver disease continue to escalate across almost all of America and in most ethnic groups, two new studies indicate.

One of the studies, which was published onlineJuly 18 in the BMJ, shows that from 1999 to 2016, the annual mortality rate from cirrhosis increased by 65%. During the same period, the annual mortality rates from liver cancer doubled.

Most concerning of all is the fact that young people aged 25 to 34 years are dying in record numbers from cirrhosis. The increase is fueled by excessive alcohol use, say the researchers.

Lead author Elliot Tapper, MD, VA Ann Arbor Healthcare System, Michigan, told Medscape Medical News: “We all meet people with alcoholic cirrhosis in their 50s and 60s. But to develop cirrhosis in your 20s and 30s requires a profound excess of alcohol and binge-drinking behavior,” he commented.

“And while obviously genetics and other factors play a role in how susceptible you are to alcohol injury, what is clear here is that there is at least a subset of individuals where there is a tremendous misuse of alcohol,” he emphasized.

“There are multiple ways you can end up with cirrhosis,” Tapper explained. Causes include hepatocellular carcinoma, hepatic encephalopathy, gastrointestinal hemorrhage, infections, and renal failure.

Cirrhosis is the end result of most chronic liver diseases, the researchers point out.

Increase in Deaths Fueled by Alcohol

The authors of the new study emphasize that the greatest relative increase in mortality from cirrhosis was seen in US residents aged 25 to 34 years. They say the increase is “driven entirely by alcohol related liver disease.”

The average annual percentage change in death from alcoholic cirrhosis from 2009 to 2016 was 10.5% in individuals aged 25 to 34 years.

“The highest burden of age adjusted mortality due to cirrhosis was seen in Native Americans (25.8/100,000), followed by white Americans (12.7/100,000),” the researchers note.

Both Native Americans and white Americans experienced rapid increases in mortality from cirrhosis after 2009. The average annual percentage change was 4.0% for Native Americans and 3.3% for white Americans compared with African Americans, the study authors point out.

Individuals of Hispanic ethnicity also had relatively high age-adjusted mortality rates from cirrhosis, the investigators note.

The greatest average annual percentage change in cirrhosis-related mortality occurred in Kentucky, New Mexico, Arkansas, Indiana, and Alabama.

Only Maryland had a statistically significant annual decrease in cirrhosis-related deaths, although the decrease was small.

Biggest Change in Men

Tapper points out that the study findings suggest that the biggest change in cirrhosis-related mortality is occurring in men.

“This implies that this is not a global process, that there is some behavior that is disproportionately affecting men and leading to these worrisome trends,” he said.

The fact that some of the poorest states in the country, including Kentucky, New Mexico, and Arkansas, are experiencing high death rates from cirrhosis suggests that the recession — which hit these states particularly hard in 2008-2009 — may be among the contributors to the epidemic of alcohol-related cirrhosis, Tapper speculated.

“Being poor doesn’t mean that you abuse alcohol,” Tapper emphasized.

“But we have this model of so-called deaths of despair, where if you have an abrupt and severe change in your life, one of the ways that people cope with it is by turning to alcohol,” he elaborated.

“So there is some evidence to suggest that a man who is newly unemployed or newly in poverty is more likely to abuse alcohol,” Tapper said.

Similarly — but, again, speculatively — young men who are facing a precarious job future with no hope in sight may be using alcohol as a way of coping with despair, he suggested.

“We need to ask people what’s going on before we leap to conclusions,” Tapper emphasized.

“And we need to focus on proven tools that can reduce alcohol misuse and make it less available in places where it is susceptible for misuse,” he added.

Liver Cancer Mortality

The rise in liver cancer deaths, which has been reported by Medscape Medical News, is explored further in a separate but related study published online July 17.

For this study, Jiaquan Xu, MD, the Centers for Disease Control and Prevention, Atlanta, Georgia, tracked trends in liver cancer mortality among Americans aged 25 years and older between 2000 and 2016.

Analyzed by sex and race, Xu found that age-adjusted death rates from liver cancer increased by 43% for men and by 40% for women during the study period.

During the same period, death from liver cancer increased by 48% for non-Hispanic whites, by 43% for non-Hispanic blacks, and by 27% for Hispanic adults.

On the other hand, death rates from liver cancer dropped by 22% in Asians and Pacific Islanders from 2000 to 2016, although both groups had the highest death rates from liver cancer overall.

“Trends in liver cancer death rates varied by age group,” Xu noted.

From 2000 to 2016, mortality rates from liver cancer increased among adults older than 65 years and especially for those aged 75 years and older.

In the last year of the analysis, Xu noted that the District of Columbia had the highest death rate from liver cancer and that Vermont had the lowest.

Dr Tapper has received grants from Valeant and Gilead and personal fees from Novartis. Dr Parikh has received personal fees from Bristol-Myers Squibb, Bayer, and Eisai as well as grants from Bayer and TARGET Pharmaceuticals. Dr Xu has disclosed no relevant financial relationships.

 

BMJ. Published online July 18, 2018. Full text

Cancer Immunol Res. Published online July 18, 2018.

For more from Medscape Oncology, follow us on Twitter: @MedscapeOnc

 

Cured Meats Strongly, Independently Tied to Increased Mania Risk

July 20, 2018

Cured Meats Strongly, Independently Tied to Increased Mania Risk

https://www.medscape.com/viewarticle/899576?nlid=123949_4562&src=wnl_dne_180720_mscpedit&uac=83396HN&impID=1690097&faf=1

Megan Brooks

July 19, 2018

Eating nitrate-cured meats such as beef jerky and other processed meat snacks has been strongly linked to an increased risk for mania, new research shows.

A study of roughly 1100 adults showed that those who were hospitalized for a manic episode were more than three times more likely to have ever eaten nitrate-cured meats than those who did not have a history of a serious psychiatric disorder.

“We looked at a number of different dietary exposures, and cured meat really stood out. It wasn’t just that people with mania have an abnormal diet,” lead investigator Robert Yolken, MD, of Johns Hopkins University School of Medicine in Baltimore, Maryland, said in a statement.

The study was published online July 18 in Molecular Psychiatry.

Diet Critical to Mental Health

It has been increasingly recognized that diet is a source of environmental factors that may contribute to bipolar disorder and other neuropsychiatric disorders.

To investigate further, the researchers collected demographic, health, and dietary data on 758 adults aged 18 to 65 years who had been diagnosed with mania or other psychiatric disorders and a control group of 343 adults who had not been diagnosed with a psychiatric disorder.

Food exposures were assessed using a questionnaire, developed by the research team, that asked participants whether or not they had eaten certain types of food.

After adjusting for potential confounding factors, a history of eating nitrate-cured meats such as beef jerky and meat sticks, but not other meat or fish products, was “strongly and independently” associated with current mania (adjusted odds ratio, 3.49; 95% confidence interval, 2.24 – 5.45), the investigators report.

I don’t think it’s totally specific for mania.Dr Robert Yolken

Nitrate-cured meats in the diet were not significantly associated with a diagnosis of any other neuropsychiatric disorder, including schizophrenia, schizoaffective disorder, bipolar disorder, bipolar depression, or major depressive disorder.

“It looked like there might be some increases in some of the other disorders, so I don’t think it’s totally specific for mania, but at the sample size we had, it wasn’t significant. We just need larger numbers to look at bipolar depression and major depression,” Yolken noted in an interview with Medscape Medical News.

No other foods were found to be significantly associated with mania or any of the other disorders.

The questionnaire did not ask about the frequency or timing of cured meat consumption, so the investigators were not able to draw conclusions about how much cured meat in the diet may boost mania risk. It’s a question they plan to assess in a future study.

Further Evidence

Consistent with their results in humans, a series of experiments the investigators performed in healthy rats showed manialike hyperactivity in the animals within a few weeks of their being maintained on diets to which nitrates had been added.

The animals also were found to have alterations in brain pathways that have been implicated in human bipolar disorder, as well as changes in intestinal microbiota.

In contrast, rats fed a diet high in meats prepared without nitrates did not show behavioral changes or hyperactivity.

The investigators point out that it’s important to note that the amount of nitrates consumed by the rats was equal to the amount a human might ingest in a daily snack, such as one hotdog or one stick of beef jerky.

“We tried to make sure the amount of nitrate used in the experiment was in the range of what people might reasonably be eating,” said Yolken.

The investigators note that to the best of their knowledge, this is the first study linking exposure to cured meat with a neuropsychiatric disorder.

“While further investigations are needed, individuals at risk for mania may consider limiting ingestion of added dietary nitrates,” they write.

Impact of Diet Underestimated

Commenting on the findings for Medscape Medical News, Dolores Malaspina, MD, director of the psychosis program at Icahn School of Medicine at Mount Sinai in New York City, said that, although interesting, studies in humans and animals “stop short of proof of causation.

“Certainly, many people in a disorganized state who don’t get regular meals may have more intake of turkey jerky because it’s convenient or fast or easy. I do see patients who buy a bag of turkey jerky rather than healthful nutrition,” said Malaspina.

“With such a finding [and] while evidence accumulates, it may be worthwhile for patients with severe mental illness to avoid these kinds of foods. Diet is crucial in mental health, and I think we have underestimated the impact of diet for brain health, and we need to keep pursuing studies of dietary intakes and supplements and mental health,” Malaspina added.

The study was supported by the National Institute of Mental Health and the Stanley Medical Research Institute. The authors and Dr Malaspina have disclosed no relevant financial relationships.

Mol Psychiatry. Published online July 18, 2018. Abstract

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