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Andrew Kavchak
ParticipantHi Folks,
Well, here we go again…another family puts their home on the market and move into a one-bedroom apartment with a card table for a kitchen table…to pay $5,000 a month for ABA/IBI.
The Harper government has created various "tax sheltered" investment vehicles, increased their contribution limits, introduced tax credits for different things, and more recently made the baby bonus universal again. For some reason, none of that seems to have helped the family much…
ParticipantHi Folks,
Well, something we have all known for a long time and which the "specialists" are finally acknowledging….definitions, criteria and expertise in diagnosis matter!
http://www.ctvnews.ca/health/first-direct-evidence-that-autism-is-not-rising-study-1.2482867
Over the years more kids have been diagnosed with autism. Whether it is because of the actual prevalence rate of the disorder increasing, or different criteria being applied in diagnosis, the fact is that the current prevalence rate is 1 in 68. If that ain't an epidemic, then what is it? This is an alarming figure. However, the way the article title is presented ("rates not rising", etc.) one would get the impression that we can all exhale and relax. I don't think so.
ParticipantHi Folks,
And in the what will they think of next? category, we have the Australian contribution a cage.
http://www.canberratimes.com.au/act-news/autism-cage-inquiry-stalled-20150616-ghpefv.html
ParticipantHi Folks,
A couple of years ago there were a series of stories in the media suggesting that children of "older men" are more at risk of autism than children of relatively younger men (compared to the "older men" types).
Well, that had me worried. My dad was no spring chicken when I was born, and I was past my "best before" date for playing as the goalie in my local men's recreational soccer team when my younger son was born. Did I mismanage the timing of my love, marriage and reproductive activities and end up involuntarily sacrificing my son's neurological well-being?
Now, several years later, I am sorry to say that it appears my feeling of guilt may spread to some ladies, both young and old, as the result of the latest news reported by CTV.
Yes, newborns are at greater risk of autism not only if the father is older, but if the mother is also somewhat older. The risk of autism is also higher if the mother is in her teens.
I don't know about you, but I'm increasingly under the impression that more and more categories of parents are being "looped in" to the red flag list of people that are at higher risk of generating offspring with autism.
And what will the next category be?
Perhaps these studies will lead to some future medical guidance suggesting best age-sex combinations for reproduction purposes with lowest risk of autism. So far it seems that teenage males and ladies in their mid-twenties are in the clear.
I can hardly wait for tomorrow's news so that we can get to the bottom of this.
ParticipantHi Folks,
Media stories about autism are interesting to observe. Some news stories are positive and provide reasons to be hopeful and optimistic. Other stories provoke sadness. And some stories just make you wonder. Today, there are three stories in the English "Daily Mail" online which generate more "awareness" of autism in one way or another…
In this article, it appears that some new vessels were discovered that may filter and transport some sort of fluid from the brain and this may help treat autism.
In this article, the message is that people with autism are "not impaired" but have "supercharged" brains.
Finally, in this article, we can all breathe a sigh of relief as it turns out that one child does not have autism as his mother suspected. The child's temper tantrums were not a symptom of his autism after all. It turns out that the family pooch kept taking his pillow at night and he was not getting enough sleep or something.
I can hardly wait to read tomorrow's stories.
ParticipantHi Folks,
Two news items. First, with respect to the Mike Lake issue that I posted about last week, it turns out that the recent federal budget included a provision of $2 million for purposes of:
(from: http://www.budget.gc.ca/2015/docs/plan/ch4-2-eng.html)
Economic Action Plan 2015 proposes to provide $2.0 million in 201516 to create a working group, led by the Minister of Health, to consult with stakeholders including the Canadian Autism Spectrum Disorder Alliance, on the development of a Canadian Autism Partnership. Of the $2.0 million in funding, $1.5 million would be used to support stakeholder participation in the working group. This working group will be tasked with the development of a plan for the Canadian Autism Partnership that would address key issues such as information sharing and research, early detection, diagnosis and treatment, and supporting families.
Apparently, Mike Lake was a key player in getting the government to commit the $2 million in the budget for this purpose. So, after years of court battles and lobbying for a National Autism Strategy, and almost a decade after Mike Lake was first elected, we've got a huge pot of money for a working group to consult and develop a proposal for a Canadian Autism Partnership. While I feel a sense of joy knowing that something is better than nothing, I still get the feeling that we're really not moving forward very much.
Second, this feeling of not moving anywhere fast is accentuated by the story today on the CBC about a mother of an adult lady with autism who is exhausted and has no place to go…
http://www.budget.gc.ca/2015/docs/plan/ch4-2-eng.htmlAutistic adult daughter leaves mom exhausted with nowhere to turn
Hope Galloway among thousands of Canadian parents desperate for helpWell, someday the working group may conclude its research and consultations and submit something to the government for consideration, and hopefully something will happen (in our lifetime, I mean).
ParticipantWell, well. Guess what the latest development is with respect to Mike Lake (MP from Edmonton with a son who has autism)?
When he was first elected to Parliament I went to see him with my colleague and we spoke with him about autism policies, etc. It did not take long to see that he did not really know much about autism and did not really care much either. When we told him what the latest CDC statistic were for autism prevalence rates he blurted out "I don't believe that!".
We then gave him some signed pages of the petition that we had going at the time to include autism treatment in Medicate, and he is the only MP that I know of who received the petition and gave it back saying that he refused to table it.
Then, when there was a vote on a bill to create a National Autism Strategy, he voted AGAINST it, and issued a disgraceful letter saying that it was bad law. FEAT BC issued an annotated version of the letter which exposed his shameful arguments. The annotation is here:
https://featbc.org/downloads/FEATBC_release_02_26_07.pdfAnd now what? Well, we still don't have a National Autism Strategy and the recent news in Ottawa is that young adults with autism are being kept in the psychiatric wards of hospitals due to the lack of group home spaces, etc.
Yet, the autism alliance called CASDA, recently had a general meeting, and according to their minutes (http://files.ctctcdn.com/c74e3290501/33110718-ea6a-4385-bd4a-ab05e9d91320.pdf), they passed a motion to make Mike Lake an honourary member and to thank him for his leadership. Apparently he got a lifetime membership and a standing ovation.
Well, well.
ParticipantWell, if there was ever any doubt that the solution to all our problems can be found in Ottawa, this is surely the story that will lay all that doubt to rest. The solution is…the psychiatric ward! With a security guard! And physical and chemical constraints! Etc..! Thank God the provincial government has created a "task force" to look into it!
Ottawa hospital spends millions to house people with autism
Young man with autism has lived in acute-care hospital for 18 months
By Julie Ireton, CBC News
Posted: May 19, 2015 5:30 AM ET
Last Updated: May 19, 2015 11:54 AM ETMichael Neve loves playing basketball, biking along the Rideau Canal and helping cook dinner for his sister, but such pleasures are impossible when your home is an acute-care hospital.
Neve, 26, is physically very healthy but he has a developmental disability and autism and no proper home.
For the past year and a half he's been living in the psychiatric ward at The Ottawa Hospital while he waits for his name to reach the top of the waiting list for a group home.
Ottawa Hospital officials say the cost of an acute-care bed for Michael runs $1,250 a day. Add to that the cost of a 24-hour security guard who keeps an eye on Neve and the price tag for his stay in hospital since 2013 is almost a million dollars and counting.
Debra Bournes, Vice President of Clinical Programs at the Ottawa Hospital, says Neve is currently one of four people with autism living in the hospital awaiting placement to a home. That also includes someone who has been there for more than 1,000 days.
The total cost to house these four people has added up to millions of dollars.
"The bottom line is these people can wait for years to be able to be discharged into a place where they can have the best quality of life possible," said Bournes.
Searching for solutions
Jennifer Neve, Michael's sister, is desperately searching for solutions for her brother. As a nurse at the Royal Ottawa Mental Health Centre herself, she's familiar with the health care system but she's frustrated Michael is still living on a hospital's psychiatric ward.
"They're set up to have two-week or four-week, short-term stays, seeing acutely ill people," said Jennifer. "I'm very grateful they've taken him in, but at the same time, it's really a band aid solution right?"
Michael Neve attended special education programs up until grade 11. He's physically active and can carry on a limited conversation, but his sister says in the fall of 2013 Michael was living with family friends without proper supervision.
Jennifer was living and working in Vancouver when Michael ended up in the Ottawa Hospital's emergency department in November 2013.
"He was self-harming. That was not good, he needed medical attention," said Jennifer. "When he was in the hospital, he stopped talking, stopped eating, he was wearing diapers, he lost all control of himself. Sort of like a catatonic state."
'Cooped up in the hospital'
Jennifer says she came to visit and couldn't believe how thin and unresponsive her brother was. She decided to quit her job in Vancouver and move back to Ottawa to become his guardian.
Michael has a security guard 24 hours a day because Jennifer said he has compulsions to hug and touch, something that can make patients and staff uncomfortable.
Jennifer said the guards keep Michael out of trouble but sometimes he still gets agitated and requires both physical and chemical restraints.
"Which is very traumatizing for Michael. I think if he were to live in a group home, maybe he'd be able to walk in the back yard and blow off some steam as opposed to being cooped up in the hospital."
Jennifer says she was told last spring that only about six people in Ottawa will be placed in a home each year and more than a hundred people are on the waiting list.
"I almost feel a bit stuck," said Jennifer.
In halting sentences Michael says he'd like to live in his own apartment in downtown Ottawa. Right now he has a personal care worker who takes him to play basketball, art and music classes four afternoons a week.
Michael says he likes the hospital and the friends he's made there, but when asked if there's anything he doesn't like about the hospital, Michael replies, "Not being able to go home."
A spokeswoman for the Ontario Ministry of Community and Social Services said the ministry recognizes work is needed on residential supports.
"That's why we've created a Housing Task Force to help recommend a broader set of residential options, including those that can be implemented in the short term to address the residential waitlist," read an email statement from Meaghan Coker.
ParticipantHi Folks,
Well, last week there was the annual Autism Awareness Day. Below are three statements that were made in Parliament. Two by MPs in the House, and one by Senator Munson in the Senate.
Instead of talking about what needs to be done and what the government can and should do, Conservative Mike Lake usually gives a short speech about how wonderful his son is. However,t his year, his message is slightly different. Personally, I find that autism has had such a devastating impact on my own son's life, that I dislike autism quite a bit, and would love it if my son could experience life without autism, and be able to function like a normal human being. However, in his annual message, Mike Lake now seems to not only love his son, but his autism too.
With respect to Senator Munson's speech, what struck me was the reference to not only a National Autism Spectrum Disorder Strategy, but for the first time I see a reference to a "National Autism Awareness Strategy". It seems that we're still working on the awareness aspect.
House of Commons
April 1, 2015World Autism Awareness Day
Hon. Mike Lake (EdmontonMill WoodsBeaumont, CPC):
Mr. Speaker, tomorrow is World Autism Awareness Day, and now 17 years since my son, Jaden, was diagnosed. It is also almost 16 years since his incredible sister, Jenae, was born. When she was just 13, in an interview with Steve Paikin, Jenae was asked a really tough question, Do you ever sometimes wish that your brother was 'normal', like every other kid?
Jenae answered without hesitation, Well, honestly, since Jaden was diagnosed with autism before I was born, I don't exactly know what a 'normal' brother is like, so Jaden kinda is my normal. She continued, If he didn't have autism anymore, he wouldn't be the same as Jaden is now.
Autism brings with it big challenges, varying significantly across the spectrum. However, as we help him deal with his challenges, we would never want to lose the Jaden we have now. The more that a 'normal' life for Canadians includes people with autism, the more we can work together through the hard stuff, and allow our brothers, sisters, neighbours and friends with autism to thrive.
World Autism Awareness Day
Hon. Hedy Fry (Vancouver Centre, Lib.):
Mr. Speaker, April 2 marks the second World Autism Awareness Day in Canada.
Autism is one the most common developmental disabilities, affecting 1 in 100. Yet many of us are unaware of the extraordinary abilities of many with autism and the challenges they face.
Many on the autism spectrum have above-average intellectual and artistic capabilities, while others have difficulties with motor skills, intellectual disability, sleep interruption, and verbal and math skills.
Autism varies widely. The quality of care and support families receive depends on the province in which one lives. Families struggle to meet the daily challenges of caring for a loved one.
Federal leadership is needed to coordinate approaches to care, to share best practices and research, health, education, income support and caregiving. I know, having worked with many individuals and patients who have autism, that they are all extraordinary persons who contribute to their communities.
In recognition of World Autism Awareness Day, many landmarks will be lit up in blue as part of the campaign. Be aware and work to remove the stigma of autism.
Senate Debates
April 1, 2015World Autism Awareness Day
Hon. Jim Munson: I rise today to talk about World Autism Awareness Day, which is tomorrow. Moments ago I was on the front steps of Parliament, and there was a rally for autism. There were 200 of us there, and it was a feel-good experience. It's the third Autism Day on the Hill, carried out by my dear friend Suzanne Jacobson of QuickStart and KickStart here in Ottawa. She's on the Hill somewhere, and I want to thank her so much because she truly is a champion. Suzanne has made it a beautiful tradition for this day of awareness building to create a banner with pictures of Canadians with autism. You should have seen it today. It was so special.
The "faces of autism" banner includes the pictures and names of 165 people children, adults and siblings. Some pictures are funny and quirky, others more formal, including graduation shots. Those photos make a powerful statement, and I'm grateful to Suzanne for helping Canadians to better understand what matters most in the ongoing effort to deal with autism as a social, moral and, above all, human rights issue.
In the last two days we had the first ever autism summit with 150 of us we began with seven or eight of us about 10 years ago from across the country under the Canadian Autism Spectrum Disorders Alliance, CASDA. The agenda was packed with insightful presentations and demonstrations. It was truly a wonderful time.
Based on the results of a national survey conducted last year to assess autism service needs amongst Canadians, discussions are moving forward. Yesterday, CASDA announced, for example, that it was asked to submit a proposal by the federal government to build a Canadian partnership with this government. I think this is a good thing. If it is successful and I'm keeping my fingers crossed there will be a lot of money in the upcoming budget. We're getting closer and closer to a national autism awareness strategy.
Honourable senators, and our guests here, tomorrow is World Autism Awareness Day. It is a day to recognize those living with autism and to reflect on how these individuals and Canadians can best ensure that their human rights are respected in this country we call home. It is about inclusiveness and a smart party would have this in their election campaign platform. If all of the parties have it, I'll support all of the parties on this specific issue, and I'll make that deal with everyone.
At this moment and within the current environment, I have never, ever believed more in a national autism spectrum disorder strategy the absolute need for one, as well as our capacity to achieve one.
ParticipantHi Folks,
And here is another lawsuit against the school system in Canada…
Hamilton Spectator
Mom sues school board for nearly $16 million alleging autistic son denied food, toilet
By Jacques Gallant
When Christian Thorndyke was an elementary student, he spent some of his school days alone in a room without access to food, water or a toilet, pleading to get out, the 12-year-old Mississauga boy with autism and his mother allege in a multi-million-dollar lawsuit against the Peel District School Board.
Christian and his mother Karen are seeking almost $16 million in damages from a lengthy list of defendants that includes PDSB superintendents, principals, teachers and staff at the various schools he attended over a period of seven years.
The defendants have 20 days to file a statement of defence once they have been served with the statement of claim, which was filed in court on Monday.
"As this is a private matter between the Peel District School Board and the family involved, we are unable to disclose any information about this case," says a statement from Louise Sirisko, superintendent of special education support services at the PDSB.
"We remain deeply committed to supporting this child and his family, and believe this goal is not well-served by talking about this very personal matter in the media."
The allegations, which have not been proven in court, include:
A support worker would "place him in a chair and hold his arms tightly behind the back of the chair for certain periods of time" as a form of punishment when he was in kindergarten at one school;
Christian was "placed in a solitary isolation room for several hours, sometimes for the duration of the entire school-day" at another school where he completed Grades 1 to 3; the school referred to the room as "Mexico."
The room was "approximately the size of a small walk-in closet" and "the defendants would alternate sitting on a chair against the door to prevent Christian from exiting the room."
He was placed alone in a room at another school on several occasions, and that at both schools, he was denied access to food, water or a toilet while in the room, and forced to clean up after urinating.
Another school made "false and misleading" reports to Children's Aid "with the intent to destabilize Karen Thorndyke's custody of Christian, and with further intent to intimidate Karen Thorndyke from subsequent involvement with the school."
Christian told the Star in an interview he felt anxious in the schools and was having nightmares.
"I felt awful," he said. "When I used to go home, I was scared to go to school the next day."
Karen said that as a child with autism, Christian can sometimes have outbursts when he feels he's in a difficult or uncomfortable situation, but that unprovoked outbursts are rare.
His mother told the Star he is doing much better now in his new school. She described the last few years as "emotionally draining and scary" and said the goal of the lawsuit is to see change happen.
"It's a huge problem and one that needs a spotlight," said Karen Thorndyke, speaking from the office of her lawyer, Rhyan Ahmed. "This doesn't end with Christian. These kids are autistic, some are non-verbal. The use of these cells, as I like to call them, is very detrimental to their well-being."
School board spokeswoman Carla Pereira, speaking generally and not about this case, said schools make use of what the board calls "alternate learning environments" for students with special needs, to de-escalate their behaviour if it presents an immediate danger to themselves or others.
"The guiding principle is that the length of time spent in an alternate learning environment should be as short as possible," she said.
"A principal or vice-principal is typically consulted in situations in which a student has failed to settle after a period of 30 minutes. If a student remains unsettled, we would generally call parents and ask for their support in picking up the student from school."
Pereira said the use of the room would be written into a student's safety plan, which is shared with parents.
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