The only way to get my son help was to put him in the care of Youth Protection so they would organize services, Katharine Cukier writes.
September 9, 2016 at 8:22 am #75
FEAT BC AdminKeymaster
In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.
This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.
—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:
These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.
Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).
Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).
How To Fight for Funding for Autism Treatment and Appropriate School Placement
1. Establish a Paper Trail
Always take notes, documenting major points of all conversations with government and school officials.
This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.
Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).
It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.
In other words, they canit use discretion unfairly under the cloak of secrecy.
2. Submit all Requests in Writing
All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.
3. Set Deadlines for Action
All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.
Why Set Deadlines?
When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.
How to icci?
A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.
Who to icci to?
Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.
Why send a icci copy?
The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.
What is the sequence of letters?
Find out the chain of command of the particular bureaucracy you are battling.
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/
Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.
Documentation from Experts:
In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.
When to hire a lawyer?
If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.
If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.
How to hire a lawyer?
The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.
October 26, 2017 at 2:55 pm #22880
The Senate Facebook page has a video recording of today’s roundtable on Autism Awareness which is available here:
There is also one of those “feel good” stories circulating in the media about a Senator who invited a barber from Quebec to come to the Senate.
<h1 id=”modal-header” class=”H-n Fw-n Fw-br Headline Reset”>Quebec barber who went extra mile for autistic client invited to Parliament</h1>The Canadian Press<p id=”yui_3_18_0_4_1509054060230_1935″>MONTREAL — A Quebec barber who got down on the floor to trim the hair of a young client with autism was applauded in Canada’s Senate chamber Wednesday, several weeks after a photo of him garnered worldwide attention.</p>
Francis “Franz” Jacob was invited to Ottawa by Sen. Marie-Francoise Megie for the Senate’s autism awareness day.
Jacob, 45, made headlines last month for a photo that showed him lying on the floor of his Rouyn-Noranda shop as he cut the hair of a six-year-old boy named Wyatt.
He explained to The Canadian Press at the time that Wyatt doesn’t usually sit still for haircuts so he bought a pair of wireless clippers in order to follow him around.
Megie invited Jacob and Wyatt’s mother, Fauve Lafreniere, to meet with her and participate in a panel discussion on autism.
They also visited an autism resource fair, lunched with Megie and were acknowledged in the Senate chamber.
Jacob, who owns an old-fashioned barber shop in Rouyn-Noranda, about 600 kilometres northwest of Montreal, said being invited to Parliament was “a huge honour.”
“I have my small shop, but receiving an invitation from your government to speak your mind about what you realize and what you did, and receiving some recognition, is quite a feeling,” he said in a phone interview.
“I’ve never been that proud in my life of being Canadian.”
Jacob says he’s received thousands of messages from around the world ever since the photo of him lying on the ground next to Wyatt was widely shared on social media sites.
Despite having no formal training, he says he’s developed a technique that seems to work for children with autism and other special needs.
That includes scheduling them at the end of the day so he can take his time and moving around the shop with them until they feel comfortable.
“You can’t make decisions for those children, it has to be them who decide,” he said.
Lafreniere, who accompanied Jacob to Ottawa, said she used the visit as an opportunity to discuss the need for more services for children with special needs.
“What came out the most often was the amount of time it takes to get a diagnosis, and the time we lose before being able to help them because it’s really long,” she said.
She describes Wyatt as a curious boy who loves to learn and play, and who sometimes needs a different approach.
Lafreniere said she originally posted the picture online to thank Jacob and to let him know he made a difference in her life.
“I never thought people would react to that extent,” she said.
Morgan Lowrie, The Canadian PressOctober 26, 2017 at 4:26 am #22878
And yesterday in the Senate….
Wednesday, October 25, 2017.
<h2 id=”54″>Autism Families in Crisis</h2>
<h3 id=”55″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>
On the Order:
Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.
<b>Hon. Daniel Christmas: </b>Honourable senators, I rise today to speak to Senator Munson’s inquiry marking the tenth anniversary of the release of the Standing Senate Committee on Social Affairs, Science and Technology’s report on autism entitled<i> Pay Now or Pay Later: Autism Families in Crisis</i>.
As I begin, I would like to thank my honourable colleagues Senators Munson, Housakos and Bernard for embarking on this debate on autism. As has been cited by many both here in this chamber and across the domain of public discourse, the impact of autism continues to be a matter of crisis for many Canadian families.
I’m thankful for this effort to keep the need for action on autism top of mind. I am determined to join the chorus of voices that have been calling upon successive governments in both federal and provincial jurisdictions to enact more programs to aid families struggling to get more care for their loved ones. And in earnest, I want to alert the machinery of government to the need to determine the full extent, depth and breadth of autism suffering in indigenous communities across Canada. I will speak to this important aspect in few moments.
I must tell you that as we conducted our research into autism, we came away sobered by the numbers and concerned that we may not yet know the full extent of the crisis in autism in respect of the true numbers of those afflicted in our country.
As you know, autism spectrum disorder is the most common neurodevelopmental disorder diagnosed among Canadian children. We also know that it’s a growing concern. The prevalence of ASD has increased over 100 per cent in the last 10 years. Autism is now the fastest-growing and the most commonly diagnosed neurological disorder in Canada. I’m sure you’ve heard the statistics. One in 68 children are affected by autism. But did you know that that figure is actually based on an American statistic? The 1-in-68 ratio was cited from research from the U.S. Autism and Developmental Disabilities Monitoring Network at the Centers for Disease Control and Prevention. According to a story published in 2015 in the Institute for Research on Public Policy’s journal, <i>Policy Options</i>, rates in Canada of autism affliction are in the range of one in 94 children aged six to nine years, according to Dr. Hélène Ouellette-Kuntz, a professor in the Department of Public Health Sciences at Queen’s University and a director of the National Epidemiologic Database for the Study of Autism in Canada.
While some decry the lower rates as being reflective of fewer numbers of autism services in regions where data is collected, Dr. Ouellette-Kuntz says we cannot rule out the possibility of a true increase in incidence in Canada.
In the face of this, it must also be acknowledged that health care support for services required by families living with autism are widely uneven across our country. Proper diagnoses can sometimes take years to be realized and required services such as behavioural, occupational and speech therapies can often face wait times stretching from months to years in some cases.
This information is, for the most part, not new. It was amply highlighted in the March 2007 report by the Standing Senate Committee on Social Affairs, Science and Technology cited earlier. Specifically, that report noted that autism treatment requires the participation of a multidisciplinary team including, but by no means limited to, medical practitioners, psychologists, psychiatrists, speech-language pathologists, occupational therapists and special education providers, all of which were deemed vital and critical for effective ASD therapy.
In the face of this, and as someone still relatively new to the Senate of Canada, I heartily endorse the findings and recommendations of the report. As I have mentioned, I emphatically endorse the positions of Senators Munson and Housakos in their repeated calls to action for federal effort in remedying the autism crisis in families across the country, and I’m thankful that Senator Bernard has joined in these advocacy efforts.
Honourable colleagues, as I mentioned earlier, there is an additional aspect to the suffering on which I feel very compelled to speak to you today. We noted that the numbers of those likely to suffer are either 1 in 68 or 1 in 94, with boys four times more likely to be afflicted than girls. But we also know that the fastest-growing segment in Canadian society is indigenous youth. I wish I could share with you statistics, hard numbers and insights into the extent of autism effects on indigenous families and communities, but there are barely any at all. Honourable colleagues, it dismays me to note there is an absolute dearth of information relating to rates of autism among indigenous persons.
Also of note is the fact that there is currently no publicly available provincial breakdown of autism statistics. The lack of data related to First Nations has been acknowledged in academic papers, and we must take steps to ensure that any federal strategy to combat autism includes evidence-based policy on the nature and extent of autism within the indigenous community, especially since First Nations healthcare is a federal responsibility for those living on reserve.
We know that healthcare and health outcomes on reserves fall below the care afforded for non-indigenous persons. We know the myriad challenges facing First Nations in remote and rural communities and the numerous challenges there are in addressing them. We note a disparity between funding for education on reserves compared to everywhere else as well. The specialized elements of care deemed vitally critical to effective autism care and treatment are difficult to source in urban centres, let alone in First Nation communities.
The issues I have just enumerated confront my home community of Membertou every day. Membertou currently has 15 community members with autism.
Provincially, in 12 of 13 Nova Scotia First Nations, we are currently dealing with 92 confirmed autism diagnoses, with another 56 children awaiting assessment. We’re faced with premium charges for many services for our community. We don’t have adequate INAC funding in our schools to provide costly special education programs so crucial to autism care. Even if and when we get service providers to render care, they are not sensitized and aware of our community’s rich culture and our many distinctions requiring recognition and accommodation.
In my community of Membertou, Madelaine O’Reilly was faced with a heartbreaking choice. Would her daughter, Hallie, who was diagnosed with autism, be able to go to school in her home community with her peers and continue to learn her culture and language? Or would she have to be sent to another school off reserve where she could access services needed for a child with autism spectrum disorder?
Sadly, the reality of the situation did away with any matter of choice: In order to receive the care that is critical to her well-being, she had to move to a school in Sydney. While this is indeed a sad reality, it sure hasn’t deterred Hallie’s emphatic dedication to sharing her journey of autism with her peers through visits to the Membertou school and her local radio appearances.
What courage and what determination this young girl has. Hallie O’Reilly, who is now nine years of age, and her mother Madelaine are two more of the many heroes helping to lead the crusade toward greater understanding and acceptance of autism and of the need for better access to assistance and services in the growing autism community.
Sharing Hallie and Madelaine’s story with you is the reason I have risen today, and I am hoping that it compels you all to join in the chorus of those advocating for a national autism strategy.
Honourable colleagues, I’m sure many of you are aware of Jordan’s Principle. Jordan’s Principle is a child-first principle named in memory of Jordan River Anderson, a First Nations child from Norway House Cree Nation in Manitoba. Jordan’s Principle’s aim is to make sure First Nations children can access all public services in a way that is reflective of their distinct cultural needs, takes full account of historical disadvantages linked to colonialism, and without experiencing any service denials, delays or disruptions relating to their First Nation status.
It’s really all about ensuring that no First Nations child suffers while governments or departments within governments argue over jurisdiction and responsibility for care.
We must acknowledge that many communities including my own still do not have the necessary tools for proper support. In light of this I’m issuing a call to action today — a rallying cry — to ensure that First Nations youth and their families are not forgotten in any strategy to mitigate the myriad challenges of autism diagnoses in indigenous communities.
<b>Hon. Senators: </b>Hear, hear.
<b>Senator Christmas: </b>Let us investigate what it will take to assure First Nations families that the means for care of their children with autism will be available to them locally in the full spirit of Jordan’s Principle.
Let us be sure and certain to illuminate the full extent of autism impacts on indigenous youth.
And let us be clear on one thing: A national autism spectrum disorder strategy isn’t just good and necessary public policy; it is a moral obligation to the parents and caregivers of those dealing with the realities of autism.
As our honourable colleague Senator Black would remind us all, it’s a matter that matters. We need to learn as much as we can about these realities in the context of First Nations and to ensure such a moral obligation, when acted upon by the federal government, leaves no child behind regardless of ancestry, geography or jurisdiction. Our children — all children in Canada — deserve no less than this.
<b>Hon. Senators: </b>Hear, hear.October 26, 2017 at 4:20 am #22877
Well, it looks like the word “autism” was mentioned several times in the House of Commons yesterday in an illustration of how the “Canadian Autism Partnership” (CAP) Project of Mike Lake and CASDA, etc. has now changed the shape of autism public policy discourse.
First, notice that the first speaker is an opposition member who hammers away at the Government for not doing anything to help Canadians with autism and their families. And what is her proposed solution? Funding the CAP project. It is clear that after two years of “study and consultations” in the development of the “business plan”, and then the period of time waiting to find out if the Minister of Health (and the Finance Minister) would approve it, and the extra months for Mike Lake’s “motion” to be debated and voted on, the CAP project is now firmly entrenched with the opposition party (ies?) as the central symbol of all that represents helping the autism community.
Second, there is an interesting example of nonsense in this exchange. While the first speaker is advocating the creation of CAP, which would be a new bureaucracy, the member from the Government side who responded to the question (the Parliamentary Secretary to both the Ministers of Injustice and Poor Health) provided the usual Government talking points about the work of the Public Health Agency of Canada, etc. And the response of the opposition MP was…? Now this is classic and really deserves to be framed because after advocating the creation of a new bureaucracy, the MP criticized the Government response to her question by denouncing….their creation of “many levels of bureaucracy”!!! I’m not kidding, this is so idiotic that you have to read it to believe it. Quote:
” Mr. Speaker, the problem with the argument that we just heard from the hon. member across the way is that he is talking about the government putting program after program into place, meaning that we have made the government much bigger and created many levels of bureaucracy that someone will have to step through to receive any sort of help that their family with a loved one with autism needs. That is not okay.”
The MP reminds me of the former Tory leadership candidate Erin O’Toole who referred in a debate in the House to the CAP as a “national program”. These guys don’t seem to have the time or interest to really understand what they are talking about and are too quick to latch on to what appear to be the “instant solutions” so that they can tick of the box on the list and confirm to their constituents “done that”. In the meantime, we’re just sitting here in the public gallery, watching all this show and wondering….and wondering….what will it take? Oh, Lord, what will it take?
House of Commons
Wednesday, October 25, 2017
Health<b>Ms. Rachael Harder (Lethbridge, CPC): </b>
Mr. Speaker, in Canada right now, one in 68 children are diagnosed with autism. More than 500,000 Canadians are living with autism today, and it is the fastest growing and diagnosed neurological disorder in our country.About half of those with autism are of average or above average intelligence, yet very few of them actually graduate from high school and go on to post-secondary institutions. These numbers are concerning to me, because they represent a tragic loss in our society. We have these individuals who have immense potential and abilities, which are not being developed, because families lack the resources they require.To better advocate for individuals and families living with autism, the Canadian Autism Spectrum Disorders Alliance brought together more than 90 autism organizations, researchers, and public policy champions, and consulted with more than 5,000 people across the country, including self-advocates, remote and rural communities, indigenous people, researchers, civil society organizations, and Canadians from every region of Canada in order to lay the foundation for a national Canadian autism partnership. Together, under the autism partnership, these groups and individuals would work together to advance research, and make sure families had the resources needed instead of duplicating their efforts.How much would this cost? In November 2016, the Autism Partnership Project proposed it would need $19 million over the course of five years, which is only $3.8 million per year. Instead of granting this small amount of money, the current government actually made a decision to kill the partnership altogether.The Liberals will try to tell us they spent money on research, but they are missing the point altogether. Research is one small piece of what the autism partnership would have accomplished had it been able to go forward. The autism community wanted a coordinated national strategy to pull together research, treatment, and best practices all in one. To use a metaphor, it is kind of like entire families going to a dealership wanting to buy a car, but the Liberals are actually just willing to sell them a tire.Families struggle to know how to best support their loves ones, because there just are not enough resources available to them, and there is not enough research to backup those that are developed. However, the Liberals made a choice that reveals they really do not believe these families are, in fact, worth the investment. I find this very sad.Just this week, the government took another step further for those who live at a disadvantage, and cancelled the tax credit for those who have diabetes.The government claims to stand for the middle class, and for those who are working hard to join it. This is the Liberal tag line. The Liberals like to use that in this place day in and day out. However, in essence, or in happenstance, they actually take direct, and destructive action toward the most vulnerable among us in this country. I do not believe that is right. In fact, I believe it is altogether mean.My question is simple. Why is it the current Liberal government can provide $400 million to Bombardier to subsidize a plane that will be owned by European billionaires, and assembled by people in the U.S., therefore putting jobs there, but it cannot find a mere $19 million, or $3.8 million per year, in order to create a Canadian autism partnership, and benefit the most vulnerable here in Canada?<b>Mr. Bill Blair (Parliamentary Secretary to the Minister of Justice and Attorney General of Canada and to the Minister of Health, Lib.): </b>Mr. Speaker, I thank the member for Lethbridge for her question and her interest in this issue. Frankly, I will assume that her comments about Bombardier are rhetorical. Instead, I would like to take this opportunity to explain the Government of Canada’s work on autism.The Government of Canada is profoundly concerned about the pressures and challenges faced by all individuals with disabilities, including those with autism spectrum disorder and their families. Autism spectrum disorder, or ASD as it is often referred to, is a broad and complex issue. We understand the value of collaboration and the role the federal government plays in this important area.That is why the federal government has focused its efforts on building research and evidence on ASD to improve our understanding of this disorder and to help organizations, professionals, and families address the health, social, and other impacts of ASD. In fact, over the past five years, the federal government, through the Canadian Institutes of Health Research, or CIHR, has invested over $44 million in ASD-related research, with over $11 million allocated in 2016-17 alone. This funding has contributed to advancing our knowledge about the underlying causes of ASD and to the translation of research knowledge into better diagnostic tools and treatments for patients. CIHR’s investments also include partnering with ASD organizations to support a research chair whose work focuses on the relationship between mental health and ASD. Since the launch of this research chair in 2012-13, much more has become known about the prevention and treatment of mental health challenges for people with ASD.An essential component of building the evidence base around ASD is ensuring that we have accurate data. That is why the Public Health Agency of Canada is working with provinces and territories to implement the national autism spectrum disorder surveillance system. Data collected through this system will tell us how many Canadians are living with ASD and how many new cases are emerging. The Public Health Agency of Canada is also supporting the Canadian Paediatric Society in developing clinical assessment guidelines for ASD. These guidelines will contribute to improvements in early detection, screening, and diagnosis, as well as early intervention.Our government is committed to supporting greater accessibility and opportunities for Canadians with disabilities, including those with ASD, in their communities and their workplaces. Under the guidance of the Minister of Families, Children and Social Development, the Department of Employment and Social Development Canada is working to provide people in Canada with disabilities, including ASD, with new opportunities to learn and develop their skills, and to participate in our economy. Through the disability component of the social development partnerships program, the Government of Canada supports projects intended to improve the participation and integration of people with disabilities in society. An example of such a project is Meticulon Consulting, which created an innovative assessment model used to train, support, and engage individuals with ASD in addressing their social inclusion needs and identifying opportunities for their community participation.Employment and Social Development Canada is also supporting initiatives to improve employment opportunities for persons with disabilities. For example, the Government of Canada is investing $26.4 million in employment and skills training specifically for individuals with developmental disabilities, with a primary focus on ASD, to improve their labour market participation. Projects currently under way include working with partners to provide community support, employer engagement, and vocational training.Under the leadership of the Minister of Sport and Persons with Disabilities, we have recently completed Canada’s largest ever national consultation on disability to inform the development of new federal accessibility legislation. We anticipate that this legislation will be introduced in Parliament later this year, or very early in 2018.In closing, I would like to reaffirm that the Government of Canada understands the complexity of this issue. We are committed to working collaboratively with our provincial and territorial partners and stakeholders to ensure that federal initiatives support a better quality of life for those living with ASD and their families.<b>Ms. Rachael Harder: </b>Mr. Speaker, the problem with the argument that we just heard from the hon. member across the way is that he is talking about the government putting program after program into place, meaning that we have made the government much bigger and created many levels of bureaucracy that someone will have to step through to receive any sort of help that their family with a loved one with autism needs. That is not okay.What I am talking about is a partnership that actually brought people together at a grassroots level. I am talking about more than 5,000 people from across the country who gathered the best knowledge, the best experiences, and the best practices possible, who would have been able to share that wealth of information and pursue greater research to help everyday families.This is the problem with the current government. The Liberals think they know best. They think they can dictate to Canadians what they need. Well, they cannot. They are wrong. Canadians know what they need and should be empowered to be the solution to the challenges they face. The role of government is to empower people, not disempower them, not to create more bureaucracy, and not to create more application levels.<b>Mr. Bill Blair: </b>
Mr. Speaker, I thank the member from Lethbridge for her comments with respect to consultation and partnership. I want to assure her that the Government of Canada acknowledges that ASD cannot be effectively addressed without proper consultation and partnership among all stakeholders. We are working to identify where the federal government can best invest in help for individuals with disabilities, including people living with ASD.I want to assure the member opposite that we are committed to working with stakeholders to ensure that federal initiatives help support a better quality of life for those living with autism and for their families. For example, the government is making significant investments in ASD research. We will continue to do so. We have provided $39.1 million to the Kids Brain Health Network over a 10-year period to further our understanding of the genetic and environmental causes of neurodevelopmental disorders, such as cerebral palsy, autism, and fetal alcohol spectrum disorders.We remain committed to broad consultation, partnership with all stakeholders, and we share the member’s concern that we need to ensure that we hear from all people with a concern about this issue.October 25, 2017 at 11:18 am #22876
Remember Nancy Greene? When I was a kid, she was a Canadian hero on the TV all the time and in Wheetabix and Mars bars types of commercials after she won a gold medal in skiing at one of the winter Olympic Games or something. She was one of those type of persons like Wayne Gretzky who had a great smile, never seemed to say or do anything scandalous, and every Canadian and marketing executive seemed to like her. Well, she’s a Senator now. She spoke yesterday in the Senate about autism. It seems like one of those really “feel good” speeches, but she referred to CASDA working on a strategy when it is supposed to be the Government that should be adopting a strategy (and hopefully one with several pillars, one of which is getting ABA treatment covered by Medicare), and nowhere did I see her refer to treatment, access issues, ABA, Medicare, etc. Maybe I missed it, but all these political speeches “bla, bla” are starting to make my eyes glaze over.
One thing that is perplexing is that even though “Autism Awareness Month” is rapidly coming to an end, I have not seen any speech by Mike Lake to note the occasion during the month or any corresponding message from him. Perhaps this is because he feels that making one two-minute speech in the House of Commons and during the rally on the Hill on “Autism Awareness Day” is enough and he does not want to push the matter too much. Maybe it is because the House does not care about the “Awareness Month” thing and he is not authorized to speak in the Senate. I don’t know. I checked the House Hansard and his Twitter account, and nothing, nada, zip. Maybe after the failure of his “CAP” project earlier this year he decided to forget about autism for a while or is waiting for a more opportune time. However, since “awareness” seems to be the only thing that he’s done since he was elected, I’m surprised that he has not beaten the awareness drum this month. I don’t know…just speculating here. I did not attend the roundtable or the resource fair on the Hill today, but maybe he showed up. Maybe he brought his son like he often does. We’ll see if he puts another picture of them together on his Twitter thing.
Senate: Tuesday, October 24, 2017.
<h2 id=”72″>Autism Families in Crisis</h2>
<h3 id=”73″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>
On the Order:
Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.
<b>Hon. Nancy Greene Raine: </b>Honourable senators, I’m pleased to rise today and speak on the subject of autism, and to recognize the work that Senator Munson and his colleagues did on the groundbreaking Senate report<i> Pay Now or Pay Later: Autism Families in Crisis</i>.
In the 10 years since this report was tabled, there is no doubt that the awareness of autism among many Canadians has improved. However, there is still much to be done to ensure that families have the best options to choose from and that our society continues to lessen the impact of families caring for autistic children and adults.
My first personal encounter with autism was about 20 years ago, when a family from the Vancouver area checked into our condominium hotel at Sun Peaks to take advantage of low off-season rates for an extended stay. They had come to the Kamloops area to find out about the Giant Steps West program that had been established some years earlier. It was one of British Columbia’s first programs for autistic children and followed a program that had been developed in Montreal.
Two of the family’s children suffered from autism, and my first impression was that they were out of control and that the parents were not properly dealing with their behaviour. I’m pretty sure this is many people’s first impression when encountering autistic children. Since then I’ve learned that autism is very complex, and also unfortunately that programs to assist families are still few and far between. I salute all the people working with the various organizations that make up the Canadian Autism Spectrum Disorder Alliance as they work together not only to increase public awareness of autism but also to build a strategy and road map to a better future.
Honourable senators, following my introduction to autism and with my “antennas up,” some years later I read a very interesting book on the latest brain research, including a very interesting chapter on Dr. Michael Merzenich, one of the foremost researchers on brain plasticity. His research led to the development of a series of brain plasticity-based computer programs disguised as children’s games. The Fast ForWord program allows therapists to work with children to make lasting changes in cognition and perception. In some cases, people who have had a lifetime of cognitive difficulty have gotten results after only 30 to 60 hours of training. But what caught my eye was to read that the program had also helped a number of autistic children.
That was some years ago. Today, I have learned that the Fast ForWord program is recognized as one of the best tools for cognitive learning. The beautiful thing about the program is that it not only helps people with reading comprehension and other typical “school” skills, but it can also change the way in which autistic children deal with the world around them — in other words, in their day-to-day social interactions.
I contacted the Scientific Learning company in Oakland, California, to find out how the program is delivered and, through them, was given contacts of several certified providers in British Columbia. All three people I spoke to were very supportive of the Fast ForWord program and its helpfulness when working with autistic children. There is a lot of information available online and many testimonials to support the use of the program. I must clarify, however, that this is not a computer program that you can just purchase; it’s a tool that needs to be used in conjunction with professional speech and language therapists to achieve its full potential.
Having learned more about Fast ForWord, I then visited the Chris Rose Therapy Centre for Autism in Kamloops, a wonderful facility that grew out of the early Giant Steps West program that I’d first heard about 20 years ago. I was surprised to learn that they didn’t know about Fast ForWord, but they were very interested in finding out about it.
Next I called some folks I know who have worked for years planning and fundraising for the Pacific Autism Family Network and who have long recognized the need for a better approach to assisting families dealing with autism. Their work came to fruition last November when the new $28 million GoodLife Fitness Autism Family Hub in Richmond, British Columbia, was opened, the first facility of its kind in North America. It is a state-of-the-art building that is slated to become a one-stop shop for families looking for support with autism and related disorders. It will include clinics, labs, classrooms, observation rooms and research spaces.
The Pacific Autism Family Network recognizes that one of the greatest issues for families dealing with individuals on the autism spectrum in British Columbia and in many parts of Canada is the lack of reliable information, leading to inconsistent and often inappropriate service delivery, therapies and inadequate resources. Currently in British Columbia, the wait time for a diagnosis can be years, with the average age of a confirmed diagnosis being 6 years old. By then, the most valuable years for therapy, from age 2 to 6, have already been lost.
With long wait times for diagnosis and then navigating the often inadequately responsive silos of medicine, education, research, psychological and social work, it is no doubt that it’s very stressful for all concerned.
In addition, honourable senators, few teachers, social workers or medical practitioners have any specialized training in autism, and the wait to see the specialists we have can be years long.
If parents don’t know exactly what their child needs or if it’s not available, they are extremely vulnerable to misinformation and to those trying to sell them a “quick fix.” Desperate, they may spend tens of thousands of dollars of their own money on what seems a promising program only to find out later that the person who sold it to them has no recognized credentials and that the program has no reliable evidence base whatsoever.
A visionary part of the Pacific Family Autism Centre is a research wing called Inform-Every Autism. The intent is to reach out to stakeholders all across Canada to collect and share information that can then be readily available to Canadians, no matter where they live.
It was most gratifying to see that last week the new health minister of British Columbia tour the Pacific Autism Family Centre, and it is hoped that the B.C. government will commit to ongoing financial support for the Inform-Every Autism research hub.
Honourable senators, I am an optimist by nature and would be quick to jump at what may be a valid quick fix, so I’m really pleased to see the establishment of a new research hub that will break down the silos and be open to evaluating new therapy programs. I’m pretty sure that even a private-sector product such as Fast ForWord will, if it proves useful, be able to be quickly adapted as a tool for therapists in the autism field.
Thank you very much, and thank you to Senator Munson for this really important inquiry.
(On motion of Senator Christmas, debate adjourned.)October 24, 2017 at 2:15 pm #22872
Tomorrow is the day that the Senate will be hosting an Autism Awareness Roundtable and resource fair. I previously inquired about who will be sitting at the roundtable, who will chair the session, and what the agenda will be.
Today, I found out that the list of participants is on the Senate website at:
<h4>The panelists are:</h4>
- Senator Wanda Thomas Bernard
- Senator Leo Housakos
- Dr. Jonathan Wiess, Associate Professor, York University and Chair, Autism Spectrum Disorders Treatment and Care
- Esther Rhee, National Program Director, Autism Speaks Canada
- Carter Grusys, Lives with autism
- Dr. Nathalie Garcin, clinical psychologist, Clinique Spectrum
- Donna Greenspon, Mother of 13 year old sons with autism (Jake and Quinn)
- Thomas Henderson, Director General, Giant Steps
The roundtable will apparently be livestreamed on Facebook. I don’t know any details, but I think I read earlier that it will be in the late morning (Ottawa time) and last an hour or so.
For those of you who may be interested in sharing (before the event) your thoughts and suggestions with the two Senators (who will probably be co-hosting the event), their emails are:
I remember that Senator Bernard spoke at the last “Autism on the Hill Rally” and she actually said something along the lines of “…enough awareness, it is time to proceed to action!” I believe she has a relative with autism and found out by experience what are all the shortcomings of “the system” that we have all gone through. Thus, she seems more receptive to our overall concerns, although I sent her an email after the rally and she never bothered to reply to me or acknowledge receipt.October 20, 2017 at 9:10 am #22864
A few more speeches on autism in the Senate yesterday…(Thursday, October 19, 2017)
<h2 id=”48″>Autism Families in Crisis</h2>
<h3 id=”49″>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h3>
On the Order:
Resuming debate on the inquiry of the Honourable Senator Munson, calling the attention of the Senate to the 10th anniversary of its groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i>.
<b>Hon. Dennis Glen Patterson: </b>Honourable senators, I was talking about working with families to explore and develop options for independent living.
I talked to Mr. John Seigner, the housing ambassador and resource centre manager for the Ability Hub in Calgary. In developing these models, Mr. Seigner has also considered the issue of who will assume the role of guardian for these individuals once the parents pass. That’s a concern of my friends who are my age and thinking about the long term for their adult son.
One such model is the family-directed group home, which brings together a group of four or five families whose adult children have similar needs and ideally already know each other from school or day programs. These parents would then select and negotiate with the preferred support agency who would, in turn, work with the families to negotiate funding avenues with government and the private sector to create a hybrid model that gives the parents the ability to direct the set-up and operation of the home to ensure tenure and stability for their children. Eventually, the agency would be phased in as the primary operator.
The other model they’re exploring in Calgary is described as “the concierge model” that builds an apartment complex that includes an allowance for a personal support worker into the capital structure to give support based on an individual’s needs, for example, helping prepare medication, helping orient an individual on how to get to school or work, help with hygiene, assistance with grocery shopping and so forth. Each assistance plan would be individualized based on input from the parents and the funding that’s available.
That, colleagues, is perhaps the most important to emphasize. In my talks with parents of individuals with ASD, I’ve been told repeatedly that the key to successful solutions is a collaborative approach. Families and individuals with ASD must be consulted not only in identifying potential solutions but in setting the goals and priorities so that the projected outcomes are realistic and mirror the realities of the front line. We cannot simply prescribe solutions and designate funding to an issue without exploring the potential solutions with parents. They bring a perspective and a wealth of knowledge that we, as legislators, can never know unless personally affected, and governments alone can’t have that knowledge.
Calgary’s approach is promising because the solutions have been developed, I’m told, with the input of approximately 100 families who meet regularly to discuss the issue of housing.
In closing, honourable senators, I want to strongly endorse Senator Munson’s call for a national ASD strategy. The numbers are just too staggering for us to ignore.
In 1994, one in 2,000 children were diagnosed with ASD. Now it’s one in 68; 63 per cent of young adults with developmental disabilities are still living at home after the age of 29, according to the National Housing and Residential Support Survey; 84 per cent need targeted support for independent living, according to the Autism Society Alberta; 94 per cent of young adults with developmental disabilities require affordable housing, while 71 per cent have mental health issues, and only 23 per cent can afford to pay for support services.
A national strategy would also ensure that northerners are able to access important diagnostic and therapeutic services. Early childhood intervention is critical to a child’s future success. Sadly, for many in the North, the only current option is to fly or move to the South, far away from families and communities and culture, in order to access important services and departments such as developmental pediatrics, pediatric psychology, behaviour therapy, speech and language therapy, occupational therapy and physiotherapy.
So, colleagues, it’s time for us to act.
<b>Hon. Leo Housakos: </b>Honourable senators, the challenges individuals and their families face when dealing with autism spectrum disorder, ASD, continue to be well documented, but it is with great pride that we acknowledge a wide variety of organizations in our great nation that are working diligently to improve what is a complex situation. However, in some ways things aren’t improving. They’re getting worse. At present, one out of every 68 children receives the diagnosis, representing a very significant portion of the population. Compare that to one out of 150 children to receive the diagnosis in 2002.
That’s an astonishing increase over the past 15 years. This phenomenon has a profound effect on individuals, families, our nation as a whole. We now know that ASD is the most common neurodevelopmental disorder diagnosed among children in Canada, and it occurs in all racial, ethnic and socio-economic groups. A lifelong condition, autism became a major concern for my wife Demi and I when our dear friends Mary Gouskos and Nick Katalifos received the diagnosis for their son Emmanuel about 12 years ago at the Montreal Children’s Hospital. Through them, we have witnessed directly the challenges and struggles that families dealing with autism are facing, and we applaud all those who continue to meet these challenges with dignity and perseverance.
Recognizing Autism Awareness Month is important to me. It is a cause that I have cared deeply about for a long time. My friends’ son, Emmanuel, is autistic. Watching their experience, my wife and I have seen first-hand the difficulties too many families face when they have a child or loved one who is autistic. I want to commend them for their courage and perseverance, and also recognize them for their dedication within their community in helping other families facing the same challenges as them.
Honourable senators, research clearly indicates that both an early diagnosis of autism and a long-term intervention strategy are critical to these families — families that are working hard to ensure positive outcomes. While our medical and education systems include some of the finest minds and approaches available, it is clear that these very same systems are overloaded and have great difficulty keeping up with the demands of ASD services.
It is not the quality of Canadian expertise in autism care that is in doubt. What we must question is how we continue to under-invest in the resources needed to help an ever-increasing number of Canadian families.
The simple yet startling reality was specifically reported 10 years ago by the Senate Committee on Social Affairs, Science and Technology in its 2007 report,<i> Pay Now or Pay Later: Autism Families in Crisis</i>. As the study’s title suggests, this crisis is only going to get worse unless the federal government takes immediate steps to address the state of autism policy in Canada. The report called for a national autism spectrum disorder strategy, even then at the heart of which would be a plan to broaden educational and professional training opportunities for Canadians with autism.
Many private organizations are attempting to fill the gaps. For example, in my hometown of Montreal, Giant Steps, a school and resource centre for autistic children, offers a comprehensive approach, including a variety of therapies and teaching methods. But sadly, there are more children on the waiting list than there are receiving the help they most desperately need and deserve.
The federal government needs to stand up.
As I mentioned, the number of people with autism grows every year. Unfortunately, the situation could get worse if the federal government does not act quickly to address this crisis.
As early as 10 years ago, the Senate produced a report on autism recommending that Canada adopt a national autism strategy that would, among other things, allow for the development of a plan to make more educational and vocational training programs available to Canadians living with autism.
Autism researchers are also working hard in Quebec with the creation of the Transforming Autism Care Consortium, TACC, which is the result of a united vision to bring together the top autism researchers in Quebec, creating a world-class hub of expertise. Forty researchers came together from different institutions in Quebec, including seven universities, among them McGill and Université de Montréal; five university health care centres; and over 200 clinicians, trainees and other highly qualified personnel. Their plan involves the development of a highly coordinated autism research structure across the province. They are doing their part. We, colleagues, must do ours.
While efforts such as those of Giant Steps and TACC must be commended, without sufficient support from the federal government, they and other organizations like them are facing a daunting task. The fact remains that we’re not doing enough to support these efforts and other similar programs throughout our nation.
The previous government under Prime Minister Stephen Harper started the effort by allocating $11 million over four years to support training programs for autistic adults with the hope of assisting them into the workforce. Indeed, some corporations have also recognized that these individuals often possess talents and skill sets that are very valuable. The current government must continue and even expand on its predecessor’s efforts.
Colleagues, we all believe that every child is born with the potential to succeed and achieve great heights, but each and every one of us is different and ultimately learns differently. When society learns to harness all of our children’s strengths and leave not one behind, only then will society truly maximize our combined potential as human beings.
Whether focusing on research and early intervention, family support services or job training, the time has come to develop a government-led, committed and coherent national policy on autism. It has been a decade since our report was released, senators. But we have not and will not forget the daily struggle of these Canadians. The time to act has come. Thank you.
<b>Hon. Wanda Thomas Bernard: </b>Honourable senators, I rise today to speak in support of a national autism strategy, a strategy that would ensure all Canadians living with Autism Spectrum Disorder have equitable access to the services they need and deserve in order to live meaningful lives.
Thank you, Senator Munson, for kicking off this year’s Autism Awareness Month and to all our colleagues who support this call for change.
Today, I aim to bring to the chamber some of the voices of Canadians that have been silenced and ignored: African Canadians, people living in poverty and other marginalized groups who have limited access to the supports they need to reach their full potential. It is time we recognize that thriving in life is a basic human right. We as policy-makers have a responsibility to make that right accessible to all Canadians. Let us work together to establish a national strategy that will enhance the lives of individuals and families living with ASD and provide an opportunity for them to succeed and thrive across their lifespans.
Honourable senators, time and again we have heard several calls for change. Senators Munson and Housakos have worked diligently to raise awareness and drive federal change. Together, we stand to represent a common goal: supporting Canadians in their quest to live productive, fulfilling lives.
The ASD community is persistent in advocating for improvements. They engage in studies and publish recommendations to improve outcomes for people living with ASD. I wish to extend my gratitude and appreciation to community stakeholders and advocates across our country for their diligent efforts to improve the quality of life of everyone living with autism.
Yet, despite all of this work, we continue to hear from families and self-advocates about the gaps and crucial need for a national strategy. Let us consider the situation of a parent who has just received a diagnosis of ASD for their child. Parents who turn to schools, community resource centres or the Internet for more information and support quickly feel overwhelmed and confused. As a result of shortages in ASD health and social supports, many parents feel isolated and frustrated when trying to care for their children, which often leads to an overreliance on emergency services.
Recently, the magazine<i> Policy Options</i> published an article whose deck reads “High rates of emergency and police services are an indication that many adults and adolescents with autism in Canada today are in crisis.” The research uncovered that nearly one in four adolescents and adults with autism had visited a hospital for an emergency over the course of 12 to 18 months. If families are continuously resorting to emergency services, it demonstrates that we must improve the provision of proactive supports.
This study also found one in six adolescents and adults with ASD had interactions with police officers, and often, their experiences were negative. Some communities have vulnerable persons registries for police officers to consult in case they interact with people who have ASD. This practice highlights the need for better supports in order to prevent these negative interactions with police and reduce the need to turn to emergency services.
In Ontario, approximately 75 per cent of adults with ASD have an annual income below $30,000. That is from the <i>Choosing Now</i> report. In my home province of Nova Scotia, the 21,000 people diagnosed with autism experience social and economic exclusion. These challenges will only worsen if supports do not follow children into adulthood.
Only 11 per cent of Nova Scotia parents raising a child with autism are able to work full time. Many families raising a child with autism live in poverty, as it costs up to three times more to raise a child with disabilities.
Adults with autism are often placed on group home wait-lists for up to 10 years in Nova Scotia, which means families are in care-giving roles much longer than they anticipate.
Not only is the literature revealing that there are gaps in services, but it is important to note that there are gaps in the available ASD statistics and data collection. There is an absence of data on African Canadians with autism spectrum disorder. Much of the research conducted does not isolate information specifically about how ASD uniquely impacts families from different ethnic backgrounds. According to the <i>Choosing Now</i> report from Autism Canada, significant racial disparities exist. It can take up to three times longer for an African Canadian child to receive a diagnosis than a Caucasian child. Children of visible minorities lack critical early interventions, which makes it more challenging for them to excel in childhood or adulthood.
Grouping all minorities into one user category limits our ability to understand challenges in different communities. When these families do not see their experiences reflected in the available information, they feel even more isolated and alone.
We are experiencing a data gap and we do not understand the intersecting needs of various families across the country. The limited use of an intersectional lens or an anti-oppressive framework in health care leaves many families in the dark. There is information available on the economic and social marginalization of African-Canadian families, and there is information available on the economic and social marginalization of families living with ASD, but the intersection of race and disability creates a circumstance in which African-Canadian families living with ASD are doubly impacted by barriers. Their realities are not reflected in the literature. Therefore, including a framework addressing the specific needs of African-Canadians within the national autism strategy would be an essential step towards equitable access to support.
Honourable colleagues, access to ASD services is a life-long need. Supports diminish for people as they age, and social and economic challenges become more prevalent into adulthood. In 2010, Canada signed the UN Convention on the Rights of Persons with Disabilities which seeks to, and I quote:
. . . promote full and equal employment of all human rights and fundamental freedoms by all persons with disabilities and to promote respect for their inherent dignity.
This demonstrates that we not only have the means and the desire to support people living with ASD, but we also have a legal obligation to provide equal opportunity for all people living with Autism Spectrum Disorder.
We need an inclusive national autism strategy that improves the lives for all families, especially for low-income families, racialized families, single-parent families, families living in remote or rural areas, and families with linguistic or cultural diversity.
Currently, there are too many gaps in services. Parliamentarians have the ability to provide the foundational support to reduce barriers impacting the lives of these families and individuals. A national autism strategy will help improve access to services across the country. This strategy can include comprehensive service standards, training and information for families and caregivers. There is no alternative. Families cannot continue to bear the responsibility of care for their loved ones.
Honourable senators, I have heard the concerns from community members, and I have witnessed first-hand the struggles, and now is the time to respond. We need to break barriers in current practices and address gaps in accessing services. We have a responsibility to create change for individuals, families and the Autism Spectrum Disorder community. Thank you.
(On motion of Senator Gold, debate adjourned.)October 19, 2017 at 7:44 am #22862
It looks like the Senators are making at least one speech about autism every time they have a session.
From Wednesday, October 18, 2017:
<h2 id=”69″>Autism Families in Crisis</h2>
<h3 id=”70″>Tenth Anniversary of Senate Report—Inquiry—Debate</h3>
On the Order:
<b>The Hon. the Speaker: </b>Before you commence, Senator Patterson, I will remind you that we will be adjourning at 4 p.m. and that you will be given the balance of your time when this item is called at the next sitting.
<b>Hon. Dennis Glen Patterson: </b>Honourable senators, I am pleased to respond to the clarion call of Senator Munson in introducing this inquiry into the tenth anniversary of the groundbreaking report <i>Pay Now or Pay Later: Autism Families in Crisis</i> to all of us to speak:
. . . in one voice in support of the autism community.
Senator Munson told us in initiating this inquiry:
If you are not directly affected, someone right next door . . is . . . .
That indeed is my experience with both family and friends. I want to share that with you today.
I have close friends whose adult son has ASD. He’s in his 30s, and his parents have been tireless in their efforts to advocate for him and provide him with the opportunities he needs to thrive. He is a bit higher on the spectrum. He is verbal but requires help and strategies for social interaction and independent living. Their experience has provided me with some insight into how families cope with children diagnosed with Autism Spectrum Disorder and helped me to identify gaps in service that I believe the federal government could help to fill.
In talking to them, I now understand that the spectrum is very broad and that each individual needs specific programs tailored to their uniqueness. Individuals may often be very gifted but also may have significant limitations. Some may lack geographical awareness. Some may be very articulate. Others may not be able to speak at all. In the last budget he tabled, my friend and colleague the Honourable Jim Flaherty dedicated $15 million, over three years, to Ready, Willing and Able, which encourages Canadian employers to hire and support youth and working-age adults with developmental disabilities, and $11.4 million, over four years, for the expansion of vocational training programs for individuals with autism.
Despite these key contributions to employment and training, there is still a great need, as I will explain, for continued support of programs that incentivize employers to embrace employees coping with ASD.
Over 80 per cent of individuals with ASD are unemployed. For many, the accommodations required to enable them to thrive in the workplace are easily made and no different than the modified-work programs that we currently offer employees across the country who are physically ill or coping with mental health struggles.
My friend’s son has taken courses in employment readiness and continues to attend weekly activities that help him to develop key skills in peer-to-peer interactions. However, the jobs that he has had are tied to government-funded programs that provide employers of Canadians with developmental disabilities with a stipend for a six-month period. Unfortunately, the jobs tend to last only as long as the funding does. I fear that this pattern is being repeated across the country and leading to many on the spectrum being underutilized.
I recognize that there is an impact on businesses because employing persons who are more limited in their capacity may impair efficiency. With that in mind, I’d respectfully suggest that targeted funding, within the overall Employment, Skills and Social Development envelope, to create incentives for long-term jobs for individuals with exceptionalities, should be a focus for this and successive governments at the federal and provincial level. Programs could include employer support, such as those resources already offered through Ready, Willing and Able. These individuals should be afforded every opportunity to pursue their dreams and to fully contribute to our society and our economy.
This may also help to lessen the prevalence of anxiety and depression experienced by many individuals with ASD.
Colleagues, the other major issue that I identified, based on my friend’s experience, pertains to housing. How do we help provide individuals with ASD with opportunities for independent living and for developing key skills required for day-to-day living? Does the Canadian housing spectrum provide enough alternative housing models for people with ASD? Safe and secure housing for individuals with ASD is integral to their success in all other aspects of their life. In this connection, I believe there are other countries — I’ve been told Denmark and Norway — that are far ahead of Canada in developing working models for housing and accommodating the varied needs of persons with roughly similar needs on the autism spectrum.
I believe the current endeavour to create a national housing strategy is the ideal opportunity to share best practices across the country so that all Canadians with similar experiences and struggles can benefit from the same programs as some in individual provinces.
In Calgary, for example, the Sinneave Family Foundation created The Ability Hub, self-described as a world-class facility, purpose built as a centre for information and for the advancement of promising practices in the field of autism.
The Ability Hub offers various programs and resources to families of, and individuals with, ASD, including employment readiness, social skills development and recreational opportunities.
John Seigner, the Ambassador and Resource Centre Manager for The Ability Hub, has worked with families to explore and develop options for independent living.
(<i>At </i><i>4 p.m.</i><i>, pursuant to the order adopted by the Senate on February 4, 2016, the Senate adjourned until 1:30 p.m., tomorrow.</i>)October 18, 2017 at 7:23 am #22859
The Supreme Court of Canada decision in the Auton case of 2004 was briefly discussed in the Senate yesterday. I don’t recall any federal politician ever talking about the Auton decision in Parliament so far. I wonder what might have brought this historic case from 13 years ago to the Senator’s attention. Perhaps the Library of Parliament, or one of the staff researchers, produced a background “brief” document for the politicians that ask for background information. I would love to get a copy. There were several that were produced at the time of the 2007 Senate committee hearings. One of them that described the differing natures of provincial programs at the time is available here:
From the Senate Debates of Tuesday, October 17, 2017:
<h2 id=”82″>Autism Families in Crisis</h2>
<h2>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h2>
On the Order:
<b>Hon. Marilou McPhedran: </b>Honourable senators, I rise today to speak to the inquiry on autism that was tabled in the other place by Senator Munson on September 28.
As October is Autism Awareness Month, it is important for us as senators and members of communities to review our knowledge and our commitment towards persons with different abilities. It also happens to be the tenth anniversary of the report tabled by the Standing Senate Committee on Social Affairs, Science and Technology called<i> Pay Now or Pay Later: Autism Families in Crisis</i>.
This report, adopted by the Senate in March of 2007, outlines key recommendations including:
•genuine consultation with all stakeholders, including individuals with autism for components of the National Autism Spectrum Disorder Strategy, such as treatment, education and respite care for families;
•appropriate level of funding from the federal government;
•implementation of a national public awareness campaign for the enhancement of knowledge and understanding about autism spectrum disorder;
•creation of a knowledge creation centre which includes an Internet-based web portal for reliable data on autism information;
•creation of an autism research network followed by substantial funding;
•addressing the human resource issues across provinces and territories within the field of autism spectrum disorder;
•and ensuring the proper qualification of autism as an eligible disability.
I salute Senator Munson and his colleague senators for the 2007 report and would like to extend my thanks for their diligent work on this issue. I wish we could say that their recommendations have been implemented — even a few of them.
However, Canadians have a lot to learn about autism and we must continue to stay on top of this challenge, one that many Canadians are up against.
Senator Munson spoke on October 3 about slow progress. Sadly, I must note that the Supreme Court of Canada ruling in 2004 — <i>Auton v. Attorney General</i> — allowed provinces to refuse to fund applied behavioural therapy for autism, and we are still struggling with the consequences of that decision as a country.
This is one of the decisions of our Supreme Court that did not extend section 15(1) of the Canadian Charter of Rights and Freedoms, the quality protections to persons living with disability. Since approximately 1 in 68 Canadians has some form of autism spectrum disorder, it is essential to understand the different facets of this disability and seek to establish ways to support those impacted under constitutional and international human rights law.
Canada has an obligation to all persons with disabilities to uphold their rights and their dignity. All persons are entitled to live their rights, which are not merely a concept for the wealthy or able-bodied. We as legislators must ensure that we respect and uphold the lived rights of all Canadians.
As we continue to hear more on this inquiry from our Senate colleagues, let us strengthen our commitment to learning more about how to uphold the rights of autistic persons and families, and move forward on the recommendations made 10 years ago.
I thank Senators Munson, Housakos and Bernard for their leadership on this inquiry thus far and for their dedication in this chamber to disability rights. I invite all honourable senators to promote Autism Awareness Month this month in their communities, to continue to seek to understand the various facets of autism spectrum disorder and to support services being provided to autistic persons so that they, too, can live their rights.
(On motion of Senator Martin, for Senator Patterson, debate adjourned.)October 17, 2017 at 3:34 pm #22857
Here’s another story from Montreal that is heart-breaking. So heart-breaking that it really makes me sick. Why is it that parents of a teen with autism have to declare that they can’t take care of him and effectively give him up to a government agency, before the teen can possibly get some of the help he needs?
I’m originally from Montreal and always used to be proud of the city when I was growing up. However, when it comes to the tribalism and the “we know what we’re doing, so butt out” attitude, I kinda get depressed about their attitude sometimes. I remember meeting with some Bloc Quebecois MPs in Ottawa years ago, including the “health critic” to discuss getting autism treatment under Medicare and a National Autism Strategy. The meetings were utterly disappointing. While they liked the idea of the feds giving Quebec money (they always claim that Ottawa takes more than it gives), the idea of providing autism treatment under Medicare pursuant to some initiative that would be national in scope was a non-starter for them. During the debate on one private member’s bill (I think it was Andy Scott’s) many years ago, the BQ health critic gave a speech in the House that portrayed a land of nirvana for the autism community in Quebec with lots and lots of great programs, etc. Her point was that they don’t need any federal interference on the autism, or any other, front. I remember copying the speech and sending it to a psychology prof at a French university in Montreal who was a specialist in autism and asking him for his thoughts about the Quebec MP’s speech. His reply was that the speech and description of autism services and programs in Quebec was misleading and a load of crap, as were many of the provincial services at the time.
So….has anything changed over the years? Well, the Liberals in Quebec took a long time over the past two years to revamp their autism programs. Based on the recent newspaper articles, it seems like there is still much that needs to be done. What I don’t understand is how governments can make cuts, and announce new programs that supposedly make things better, when clearly the cuts are steps backward (as the article below describes).
And so what do the autism awareness enthusiasts think about this story? I know, I know….this calls for …..MORE AWARENESS! Well, I think it calls for more action to address the obvious gaps in the system. This parent who wrote the story is an articulate teacher, but you can be sure that there are more parents like her who may not be as effective as communicating and whose stories don’t make it to print. In other words, there are many more like this one.
Speaking of autism awareness, I finally got a response from the Senate “Outreach” folks concerning my inquiry about what’s happening during their autism “resource fair” on October 25:
“…The event will be taking place on Parliament Hill. It will include a Facebook Live roundtable in the morning (10 a.m. to 11 a.m.) and a resource fair where visitors can learn more about autism (from 12 p.m. to 4:00 p.m.). The Senate is partnering with the Canadian Autism Spectrum Disorder Alliance (CASDA) and other organizations to offer visitors to the resource fair a complete picture of autism, from the point of view of families, researchers, therapists and people living with autism. I would be happy to extend an invitation to both events if you’d like.”
A “complete picture of autism”? How about a complete picture of the needs of the community, what is being offered across the country, what the gaps are, and how the Parliament of Canada and the provinces can help eliminate the gaps (e.g., leadership, money, negotiations with the provinces, setting national standards, passing a law or two? … Just wondering). Is that really too much to ask for and expect from the Parliament of Canada? I guess that is not what raising awareness is all about.
I asked for more details about the roundtable participants, the chair (or MC), the agenda, etc. before determining whether I will ask for an invitation (I gather it is “by invitation only”…and I suspect that those who will be invited probably already know a lot about autism and don’t need to raise their awareness levels much).
On another note, I really want to thank the owners of this board and FEAT BC for allowing me to regularly share my thoughts and post on this board. Sometimes I just need to speak out, and this board is a great way to do so.
<h1 class=”entry-title”>Opinion: Quebec ill serves autistic teens in crisis and their families</h1>
I hope that Health Minister Gaétan Barrette has read the sections of the damning new report from Quebec’s ombudsman (protecteur du citoyen) that show the damage he has done to health services. It could serve as prologue to our family’s calamity.
Maybe the doctors who run the province can picture me in the Emergency ward on four different occasions this year, a broken-hearted mom singing songs from Mary Poppins to a sedated, autistic teen strapped to his bed trying to nod his head in time.
Since the fall of 2016, my son has been going through a crisis. He is not alone. The largest cohort of autistic children diagnosed in Quebec is reaching adolescence; there are hundreds like my son whose hormonal and neuronal changes cause severe behaviour problems. Because he cannot speak, the turmoil is communicated with his fists.
The government has done little to prepare for this group’s adolescence, let alone their post-age-21 services. The Liberals have decimated the already scant services for autistic people, and thus this difficult phase turned into a nightmare.
Because of budget cuts, in 2015, the rehab centre that serves autistic citizens cancelled my son’s educator. By August 2016, I was asking for help, but because our “épisode de service” was finished, it took Benjamin punching out his mother in January 2017 for our request to be upgraded. Too little, too late. By then, he needed to be hospitalized in an autism ward at a psychiatric hospital. However, under Barrette’s “reforms,” this unique unit for autistic children has lost half of its beds, therefore reducing the time it will keep teens in crisis from three months to three to four weeks.
The hospital rightly believes that once stabilized, it is better for these kids to be in a rehab residence with a specialized team. They don’t seem to be aware that there aren’t any in Montreal for autistic teens. As well, in the spring of 2016, 50 per cent of the publicly run centres were closed, because our neo-liberal government prefers the private option. I simply can’t accept outsourcing the needs of our most vulnerable citizens, intellectually disabled people who can’t defend themselves against what is, according to the ombudsman, often mediocre, understaffed service and even neglect.
Instead of one longer, effective hospitalization, my son was sent home in March only to be hospitalized again four more times in emergency situations because the rehab centre doesn’t have a crisis residence or even enough trained personnel to provide intensive support in the home — by then my son was too dysfunctional and aggressive to live with us.
And here is the most Kafkaesque part: The only way to get my son help was to declare we couldn’t take care of him. We had to put him in the care of Youth Protection so they would find him a bed and organize services. Imagine, your kid has epilepsy and you can’t get him proper treatment unless you hand him over to Youth Protection? My son has a disability: His acute suffering is no less substantial than a child with a head injury or drug addiction. His human rights are equal to theirs. Why is it so hard to get him help?
If my son had received the services he needed, a lot of suffering would have been prevented. And it would have cost the public a lot less. If vital services in education and in health had not been reduced by the government, my child would not be deeply distressed, living away from his parents, on a cocktail of powerful tranquilizers.
While the Liberals toasted their $2.5 billion surplus, my family descended into despair. Our joyful son has been traumatized by his experiences.
The ombudsman has demanded the government repair the damage. As far as my family is concerned, austerity is a declaration of war against the weakest members of our society.
<i>Katharine Cukier is a Montreal teacher. </i>October 17, 2017 at 1:32 am #22856
And from the world of “Did they? Or did they not?” falsification of data and the destruction of credibility in scientific research about … yes, here we go again…. a possible link between vaccines and autism, we find to our deep regret that UBC has now gotten into the act.
Unfortunately, it appears that the original data was taken to China and eaten by a dog who likes homework or something. I sure hope that they eventually are able to confirm what may have happened and what was the motive. I’m always perplexed by those who would engage in the falsification of science and knowingly promote falsehoods. Such previous shenanigans were also outlined in Dr. Freeman’s outstanding and very clear book “Science for Sale in the Autism Wars”. For those of you who like reading non-fiction about fiction, this is a great book.
But truth be told, I always had a soft spot in my heart for UBC. I remember visiting the campus as a teenager, and applying, and seriously considered going. Any university with a nudist beach on campus that was 4,000 kms away from my parents just sounded too good to be true.
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