[FEAT BC Admin]

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.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

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).

Sabrina

 

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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).

Why?

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.

TOP

Minister
Deputy Minister
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/

BOTTOM

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.

Topic

[Andrew Kavchak]

Hi Folks,

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:

https://sencanada.ca/en/sencaplus/news/senate-launches-autism-awareness-campaign/
<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:

WandaThomas.Bernard@sen.parl.gc.ca

Leo.Housakos@sen.parl.gc.ca

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.

[Andrew Kavchak]

Hi Folks,

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.

[<i>Translation</i>]

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.

[<i>English</i>]

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.

(1500)

The federal government needs to stand up.

[<i>Translation</i>]

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.

[<i>English</i>]

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.

(1510)

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.)

[Andrew Kavchak]

Hi Folks,

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:

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>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>)

 

[Andrew Kavchak]

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:

https://lop.parl.ca/content/lop/researchpublications/prb0622-e.htm

From the Senate Debates of Tuesday, October 17, 2017:

https://sencanada.ca/en/content/sen/chamber/421/debates/147db_2017-10-17-e#82
<h2 id=”82″>Autism Families in Crisis</h2>
<h2>Tenth Anniversary of Senate Report—Inquiry—Debate Continued</h2>
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. 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.

Thank you.

(On motion of Senator Martin, for Senator Patterson, debate adjourned.)

 

[Andrew Kavchak]

Hi Folks,

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.

From: http://montrealgazette.com/opinion/opinion-quebec-ill-serves-autistic-teens-in-crisis-and-their-families
<h1 class=”entry-title”>Opinion: Quebec ill serves autistic teens in crisis and their families</h1>

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.

KATHARINE CUKIER, SPECIAL TO MONTREAL GAZETTE

Published on: October 12, 2017 | Last Updated: October 12, 2017 4:59 PM EDT

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>

[Andrew Kavchak]

Hi Folks,

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.

http://www.cbc.ca/news/canada/british-columbia/ubc-autsism-vaccine-paper-retraction-chris-shaw-1.4351855

http://www.cbc.ca/news/canada/british-columbia/ubc-vaccine-autism-paper-pulled-1.4357568

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.

 

[Andrew Kavchak]

Hi Folks,

Here’s something about “awareness”.

This morning I was listening to CBC and Anna Maria Tremonti’s interview with Ken Dryden about his new book dealing with concussions in hockey.  I grew up in Montreal in the 70s. Ken Dryden was the superstar goalie for the Canadiens and provided me and all my classmates with some of the most exciting memories from our youth.  I’ll never forget his (and Tony Esposito’s) performance in the 1972 Summit Series with the Soviets.  A few years ago while riding a bus I saw him crossing the street with a box of Tim Horton’s muffins on his way to work. I quickly got off the bus and chatted with him for two blocks before we had to go our separate ways. However, before saying goodbye, I asked him if I could give him a hug.  He granted my childhood wish and made my day. Now if I could only give Paul Henderson that hug that I’ve wanted to give him since he scored that game eight winning goal in Moscow on September 28, 1972 with just 34 seconds left! Thank you Paul Henderson, wherever you are!

Ok, so what about “awareness”?

At about 31:35 minutes of the interview (which you can hear at this site:)

http://www.cbc.ca/radio/popup/audio/listen.html?autoPlay=true&clipIds=&mediaIds=1074145859542&U=%5Bobject%20Object%5D&contentarea=radio&subsection1=radio1&subsection2=currentaffairs&subsection3=the_current&contenttype=audio

Ken Dryden says something interesting about campaigns to raise awareness.  He points out that people often confuse awareness with action.  He points out that there are those with power, and the rest of us. Many in that second category assume that if they generate awareness, then those with the power will make informed decisions.  However, the awareness raisers are often disappointed that those with power do nothing, and then what do they think the solution is?  To raise more awareness of course.  So they conduct more studies, write more articles, etc. and build a mountain of awareness that is “so high”, “outrageous” and “humiliating”, that something has to be done, but nothing happens.  I thought he was talking about the autism community!

What Dryden was focusing on was the fact that there is now so much awareness about the negative impacts of concussions on hockey players’ lives that NHL Commissioner Gary Bettman should adopt a rule that hits to the head will not be tolerated and will automatically result in (major?) penalties. Personally, I thought they passed such a law in my son’s minor hockey league several years ago and it seems to help reduce unnecessary hits, but some collisions and pucks or sticks to the head are unavoidable. Anyways, while he was talking about the need for action and not just awareness raising, I thought he could say the exact same things about autism awareness campaigns.

The UN declared the first World Autism Awareness Day about a decade ago and Senator Munson passed a bill in Canada making the same say (in April) an autism awareness day in Canada. Every year at that time we hear the speeches in the House and Senate and at the rally on the Hill.  However, what we really need now is “autism action day in Canada” and corresponding action.

October is Autism Awareness Month and the Senate is hosting a special autism awareness day on October 25.  They will apparently host a “roundtable”.  I inquired with one Senator over a week ago about the nature of the roundtable (e.g., who will be there and what is on the agenda, etc.) and my inquiry was flipped over to another Senator.  So far, no response….  Thus, not much “roundtable awareness” for now, although I’m sure some of the usual community “leaders” are involved in the set up for the event.  Will any action result after the roundtable?  I’m looking forward to finding out.

 

 

[Andrew Kavchak]

Hi Folks,

Well, from the world of “Is that really possible in a developed and otherwise civilized society?”, here are three stories from our glorious Commonwealth.

For the first story, here is a quote below…see if you can guess which country it is about…

“Parents of children with suspected autism are having to wait at least 44 months for diagnoses, prompting a cross-party group of more than 140 MPs to write to the health secretary, [name deleted to make the guessing game a real guess], demanding urgent action.”

44 months for a diagnosis?

And a cross-party group of over 140 MPs are putting pressure on the chief health politico to do something?

Yup, you guessed it…

From: https://www.theguardian.com/society/2017/oct/14/autism-diagnosis-waiting-times-jeremy-hunt

Jeremy Hunt is a British Conservative Party politician who has been the Secretary of State for Health since 2012.

While the 44 months for a diagnosis is disgraceful, I’m impressed that 140 MPs from different parties (presumably including the reigning party) would take the time to raise an autism issue with the Health Minister.  I wonder what it would take for something like that to happen in Canada? Maybe 45 months…

And now, for the second story, take a guess at which country this story came from…

“A woman whose son was sexually and physically abused multiple times in a state-funded disability home is calling on the government to shut down the facility immediately.”

Need a hint?  How about this article headline:

“Families ask government to shut down Autism Plus following damning Ombudsman report”

From: http://www.theage.com.au/victoria/families-ask-government-to-shut-down-autism-plus-following-damning-ombudsman-report-20171005-gyuruw.html

Australia.

For the third story, I came across a media article about a report compiled by an “Autism Society” and a university that was issued about the the challenges faced by the autism community. The article contained what struck me as nothing new (no surprises) and contained all the buzzwords we are so familiar with, e.g.,  “significant gaps”, “ongoing for years”, “challenges faced…are huge”, “lack of services available”, “exasperation at long wait times”, etc.

Can you guess which jurisdiction?

The media report was from 2016 and was recently updated.  It involves the Autism Society of Newfoundland and Labrador working with the MUN (Memorial University of Newfoundland).

The article and update are here: http://www.lportepilot.ca/news/local/report-identifies-challenges-for-those-with-autism-46057/

This news is interesting because it suggests that a provincial autism society can do its own “issue identification” exercise in collaboration with a university. I’m glad to see a university taking part in such research. Presumably, several faculties would have an interest in having their students undertake such survey and consultation exercises (e.g., medicine, social work, education, communications, public administration, etc.).

The creation and issuance of this report is really relevant to the CAP project thing that was proposed a while ago in the House of Commons and rejected by the current Liberal government.  The CAP project proposed to create a new bureaucracy and spend millions of dollars to engage in a number of things, including “issue identification”.  However, as this article identifies, the issues are all already very well-known to the community.  Yet, rather than working to resolve the issues, some people and organizations would rather take the time, and spend the money, to engage in “issue identification”….and when? Oh Lord, when?.. would they be ready to proceed to the next step of doing something to address and eliminate the “identified issues”?

Well, three cheers for the Commonwealth and its progressive nature!  I wonder if the Royal Family is taking note.

 
<h1></h1>

[Andrew Kavchak]

Hi Folks,

Well, here we go again….another family trying to get ABA for their child, and the school board in Canada’s largest city won’t have it.  Another “Human Rights Tribunal” case for the record books… I wonder how much the “autism awareness” campaigns are helping families in such situations?

What really bugs me about these kind of stories is that, as we in the community all know, dealing with autism at home on a 24/7 basis can be totally draining, especially in the early years.  And it is not as if you can just “turn it off” at any moment.  And even though we have this tremendous challenge to deal with, the school board officials, school administrators, teachers, etc. sometimes just add to the pile of challenges in such a way as to make things worse. I find it amazing that families are willing to pay for the ABA provider in the schools, and the schools still refuse to play.  Just last year the Ontario government went through a year or so of flip-flopping on their autism program reforms and their last publicity campaign and propaganda announcements would have us all believing that everything is just….fine.  I even saw a picture of the responsible Minister with a big smile on his face.

Another thing about these stories is that they are often written by journalists who don’t have the background, and who evidently have to slap something together by the publishing deadline to meet their editor’s needs, etc.   The result is that such articles often include some BS that serves as a convenient distraction to satisfy the standard journalistic writing formulas. It is often considered necessary by journalists to present either “both sides” or “multiple sides” of a story in order to appear objective. Unfortunately, in the process, some of the “sides” are summarily described, and thus acquire the credibility that they sometimes don’t deserve.

One example in this article is the statement: “Although some members of the autistic community have written at length about negative experiences with ABA, saying it hampers their natural way of understanding the world,…”

Members of the autistic community?  I assume that means people with autism.  And they have “written at length” about how it hampered them and their otherwise natural way of understanding the world…?  How I wish my child had that kind of autism that he would be able to communicate through writing “at length” and provide a detailed analysis of his natural way of understanding the world, and how ABA affected him, etc.   Are these members high functioning?  Or super high functioning?  Maybe not autism, but Asperger’s Syndrome?  Maybe they did not need ABA for whatever they were perceived to need to learn.  Or maybe they did not need ABA at all.  Unfortunately, notwithstanding their ability to analyze and communicate, the message from these “members of the autism community” never seems to be “Hey, I’m so high functioning, that I don’t need ABA to get by, however, those who are low functioning could potentially benefit from it and reach my level of functioning,…at least, that’s what the studies suggest and I support that and hope they can get access to the treatment”.  I’ve never heard that at any “autism awareness” rally or event on the Hill or elsewhere. That’s one of the reasons why I think that the references to “self advocates” is sometimes a prescription for confusion. Quite often the “self advocates” make it quite clear that they can advocate for themselves, but not those who are incapable of advocating for themselves, and since the things the “self-advocates” lobby for is not the ABA that the lower functioning folks could benefit from, it is problematic to suggest or imply that they speak on behalf of the community.  They don’t.  They speak for themselves.

From: https://www.thestar.com/news/gta/2017/10/13/family-seeking-autism-therapy-in-class-launches-human-rights-complaint-against-school-board.html
<h1 class=” article__headline” data-reactid=”90″>Family battling for son’s right to autism therapy in school launches human rights complaint</h1>

<p data-reactid=”92″>The family alleges the Dufferin-Peel Catholic District School Board has consistently refused to allow her five-year-old son to receive Applied Behaviour Analysis (ABA) in class.</p>

By MICHELLE MCQUIGGEThe Canadian Press

Fri., Oct. 13, 2017

An Ontario family has launched a human rights complaint against a school board in an effort to get a popular form of therapy for autistic children provided to their son in class.

Beth Skrt of Mississauga, Ont., alleges the Dufferin-Peel Catholic District School Board has consistently refused to allow her five-year-old son Jack to receive Applied Behaviour Analysis (ABA) in class.

She says Jack has been receiving and benefiting from the therapy at an off-site facility he attends multiple days a week. Her son is also supported by education resource workers in class but she argues they are not equipped to provide the same level of therapy.

Read more: Parents battle for son’s right to autism services in school

Skrt says her family offered to cover the cost of private ABA professionals to work with her son at school, but she says the board won’t allow it.

The family has brought the issue before the Human Rights Tribunal of Ontario, seeking the right to provide ABA for Jack in his classroom.

The lawyer representing the board at the tribunal — which began hearing the case this week — did not indicate what arguments she planned to make, but says Dufferin-Peel supports providing appropriate educational services for all.

“We are confident that our evidence will demonstrate that we have fulfilled our commitment to students,” Nadya Tymochenko said in a statement.

But Skrt, who works as an education resource worker for the board, said she believes the system is letting her son down.

She said her family initially balked at the prospect of a long and costly battle before the tribunal, but said the alternative was compromising Jack’s future.

“There’s so much potential there,” Skrt said in an interview. “He is verbal. He is able to learn. He reads. He talks. He’s friendly. He tries to play. It doesn’t always work out, but he’s just a really good kid. And I thought to myself, ‘how do I live with myself? How can I just let him fall through the cracks of the system?’”

ABA is a type of treatment meant to teach autistic children to regulate behaviours that are believed to be socially significant.

In Jack’s case, such behaviours currently include “finger-spelling in the air,” as well as making clicking or humming sounds when he gets overwhelmed or anxious.

Although some members of the autistic community have written at length about negative experiences with ABA, saying it hampers their natural way of understanding the world, an opening statement filed with the tribunal on behalf of the Skrt family said Jack’s care team have consistently indicated he would benefit from the approach.

The statement said Jack began receiving ABA at the age of three, at which time he was not toilet-trained and was highly withdrawn. It said the ABA program he accessed outside school helped him make significant progress and argued the therapy is needed in class to help him fully access his education.

According to the statement, proper ABA can only be administered by a Registered Behaviour Technician (RBT) working under the supervision of a Board Certified Behaviour Analyst.

According to the statement filed on behalf of the Skrt family, the Dufferin-Peel board currently has such an analyst on staff and employs education resource workers who interact directly with Jack. But those workers have not received training as RBTs and are not qualified to provide proper ABA, the statement said.

“The board has suggested it provides Jack with ‘ABA methods.’ With respect, ‘ABA methods’ is not a recognized term. One either provides ABA, or provides something that may loosely resemble ABA,” the statement reads.

“The science behind it must be understood and it must be performed in a rigorous manner. Without the proper training, the (education resource workers) working with Jack are unable to provide such programming despite their best efforts.”

Skrt said she and her husband offered to cover the cost of an RBT to accompany Jack to class, but said the request was denied. She said the board gave her many reasons for the rejection, ranging from citing Ministry of Education policy to claims that resource workers were equipped to provide the necessary level of service.

Nicole Bardikoff, senior researcher at Autism Ontario, said ABA has long been seen as the “gold standard” for behavioural interventions, adding it has been well studied and found to yield positive results.

“One of the main components you’re looking at with ABA is how to generalize behaviour from different settings,” she said. “Children spend most of their time at school, so it makes so much sense to be able to meet children where they are … to really help with behaviour there.”

However another group, Canadian Autistics United, does not favour ABA, saying it supports therapies that “work with unique autistic strengths, instead of ones that fight against them and force normalization.”

“ABA may make us look normal, but that is an illusion,” group spokeswoman Vivian Ly said in an email to The Canadian Press. “The outward appearance of improvement comes with internal, emotional harm and increased anxiety.”

The Ontario government has a policy requiring school boards to offer special education accommodations for children with autism, which Bardikoff said can include ABA.

But Bardikoff said the ABA field is not currently regulated, and even terms such as “board certified behaviour analyst” are misnomers as there is currently neither a board nor a certification in place.

That is likely to change in the coming months, according to a new provincial program set to be implemented by next spring. Minister of Children and Youth Services Michael Coteau has announced that ABA practitioners will be regulated in the future, though few details are currently available.

[Andrew Kavchak]

Hi Folks,

Some more debate and reference to behavioural therapy, the costs, the wait times, etc.

From the Senate Debates, Thursday, October 5, 2017:
<h2 id=”63″>Autism Families in Crisis</h2>

<h3 id=”64″>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. Mobina S. B. Jaffer (Acting Leader of the Independent Senate Liberals): </b>Honourable senators, I rise today to speak on Senator Munson’s Inquiry No. 31.

May I have permission to sit and speak, please?

<b>The Hon. the Speaker: </b>Yes, Senator Jaffer.

<b>Senator Jaffer: </b>Thank you.

I wish to act on the Standing Senate Committee on Social Affairs, Science and Technology’s report named<i> Pay now or Pay Later: Autism Families in Crisis</i>.

Before beginning, I would like to thank Senator Munson for his tireless work to ensure that people with autism and their families get the support they need.

<b>Hon. Senators: </b>Hear, hear!

<b>Senator Jaffer: </b>He has, for a very long time, been truly a champion of people with autism. The subtitle of the report this inquiry deals with, <i>Autism Families in Crisis</i>, perfectly describes the situation for many families of the 1 in 68 Canadians, or approximately 530,000 Canadians, who are affected by an autism spectrum disorder.

Families are often forced to wait for unacceptable periods of time to get their children the services they need. For example, speech therapy and behavioural therapy can have wait lists that go as long as several years.

Given how children need this therapy during their youngest years, while they are still in their developmental period, this often means that the therapy is far less effective by the time it is received.

Other families struggle to pay the cost of supporting their child with autism spectrum disorders. In many cases, publicly funded health insurance only covers a fraction of the support that a child may need, meaning that parents are forced to pay the rest out of their own pockets.

Given that therapy for autism spectrum disorders can cost as much as $60,000 every year, this often means that parents must make great sacrifices to provide their children with the support that they need to learn and succeed.

Finally, many families are struggling to deal with the stigma and silence that still surrounds autism spectrum disorders, which causes many cases to go undiagnosed through those crucial first years of the developmental period.

Recognizing how serious this issue was for Canadians, the Standing Senate Committee on Social Affairs, Science and Technology conducted a study to find a solution for this issue 10 years ago, with Senator Eggleton as the committee chair and with Senator Munson, Senator Mercer and Senator Watt also participating.

This study resulted in the report that this inquiry presented to the government entitled<i> Pay now or Pay Later: Autism Families in Crisis</i>.

While the study covered a large variety of areas related to autism in Canada, there was one clear message sent by this report: Canada needs a national strategy on autism. As Senator Munson mentioned yesterday, or the day before, there have been some improvements since the report’s publication.

There is now an autism spectrum disorder surveillance system that keeps track of data around the country regarding autism. Our government also spends $8 million every year on research and funding employment programs for people with autism spectrum disorders. Outside of the government, awareness about autism has also reached unprecedented levels, meaning that more voices than ever before have joined the discussion.

(1520)

However, as Senator Munson also said yesterday, there is still a lot of work to be done. If we truly wish to help the families that are struggling to provide their children with the supports that they need help their children succeed, we need to specifically create federal targets and programs that will accomplish that very goal. We need a national strategy on autism spectrum disorder.

If we wait, countless Canadians will continue to suffer. I have heard many stories from families who have had to make great sacrifices to support their children with autism. I’ve heard from parents who mortgage their homes to cover the massive costs of therapy. I’ve heard from parents whose physical and mental health deteriorate as they are forced to deal with the very challenging task of caring for a child with autism without any form of support. I have heard heartbreaking stories of children who face horrible bullying because they suffer from autism spectrum disorder. Finally, I have heard pleas from parents who feel helpless as their children face challenges throughout their youth and are unable to cope without the supports they need.

Honourable senators, this month is National Autism Awareness Month. This month I urge you all to support this inquiry and to urge our federal government to create a national autism strategy. Families across Canada with children suffering from autism spectrum disorder are calling for our government to show national leadership on this issue.

Honourable senators, if there was any group of children that needed our support, it is this group of children; children who suffer with autism.

Let us add our voices to this message. Thank you.

(On motion of Senator Omidvar, for Senator McPhedran, debate adjourned.)

[Author]

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