[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.

 

---

—-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

 

---

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

[Franca Pastro]

Hi Andrew,

I want to thank you for your diligent reports on what is happening (or not) at the Parliament buildings in Ottawa.  It is a long way away from us and often we don’t hear what is really going on.

Franca

Victoria, BC

[Andrew Kavchak]

Hi Folks,

One of the last Senate speakers made some reference to the numbers of viewers who watched the live streaming of the Senate Autism Roundtable last week on Facebook. I think they said there were 9,000 viewers or something. I decided to take a look at the video recording of the roundtable on YouTube.  It is available at:

There are 267 views.  The French version has eight (8) views.  There is also a video of Senator Leo Housakos from the roundatable event (he spoke for a few moments at the very end) and it has “No views”.

The video is an hour long and so I tried to watch through it, although I skipped over some parts by some speakers once I thought I got the theme of what they were saying.  There were a number of speakers from different sectors of the autism community (e.g., a professor who studies it, a person conducting research for the Autism Society of Canada, a “self-advocate” student of business in college, a psychologist, a mother of two kids, and the director of an education centre….and, of course, three Senators).

What the event reminded me of was some sort of social networking exercise where everyone talked for a few moments about themselves and their experiences and what they learned. At the end, the whole thing was a big stew where everyone threw something in the pot.  Some things struck me as I watched and scanned through the video.

First, while the Senate report of 2007 was referred to a lot, I did not detect any mention of the Auton case decision of the SCC of that same year and its meaning or consequence. The issue of Medicare coverage for autism treatment did not come up.

Second, numerous speakers stated that “self-advocates” are very important to understanding autism and people living with autism are like. However, the self-advocate who spoke (flawlessly, I might add), indicated that when he had his first job, he waited two years and four months (yes, 28 months) before telling his employer that he had a disability. How I wish, if my son had to have autism, that he would have that kind….where he could get a job and his employer would not ask him whether he needed any special assistance to do his job, but instead my son could function without the disability being noticed. It is a wonderful story….but has nothing in common with my son’s situation.

Third, the mother of the two kids on the spectrum spoke about the benefits of early intervention and she actually mentioned “ABA” (I did not detect anyone else speaking about ABA, although the professor at one point spoke about “interventions”).  The mother stated that her kids got some from the provincial government, and that they were able to afford expensive treatment in the private sector.  Now her older boy can’t stop talking. She spoke about treatment being “cut off” when the boys reached the age of six and the need for more private sector treatment.  However, I did not hear her say the word “Medicare” and I did not hear her argue that the treatment should be fully covered under Medicare without any age cut-off, etc…

Fourth, the person from the Autism Canada (our supposedly national association) made reference to many priorities (when everything is a priority I wonder what is a “priority” again?) and about services in rural Canada and employment challenges.

Fifth, during the question period there was a high profile lawyer (named Laurence Greenspon, who had the same last name as the mother who spoke and was perhaps related) who took the microphone and looked a little surprised. He said that it has been 10 years since the Senate report, and he asked the people around the table “what is the first step, in your opinion, to getting a National Autism Strategy?”   Ah! Finally!  Somebody asked something concrete relating to a real work plan and next steps.  Although there were many references to National Autism Strategy, I did not hear anyone talk about what should such a strategy consist of, and I did not hear anyone talk about the Health Minister negotiating a “autism treatment accord” to get autism treatment covered. Yes, someone said that people should not have to deplete their savings to pay for treatment in the private sector, but the logical conclusion of the thought….(e.g., what is the required public policy) was not elaborated on. In response to the lawyer’s question, Senator Munson stated that the Senate was going to pass this motion, and deliver it to the cabinet and the Prime Minister. He stated that the Senate was not going away and was going to seek a meeting with the PM.  Senator Bernard then said that the time has come to move beyond awareness and take action.

Well, in the past 10 years the Senate did not seem to have any influence on the Harper cabinet, and so far, the Liberal government has been non-responsive. In fact, Trudeau even booted the Liberal Senators out of the Liberal Caucus (all of them) a long time ago.

Thus, while I wish the Senators good luck with their motion and trying to move the Cabinet on the autism file to adopt some meaningful public policy, I suspect that the issuance next year (expected) of the Public Health Agency of Canada (PHAC) first report on the Canadian autism prevalence rates will probably be the thing that might spur Government action. However, given that this data was first called for by former Tory Health Minister, Tony Clement, back in 2007, it will probably take another long period before the date leads to any action (if any).

 

[Andrew Kavchak]

Hi Folks,

Well, “Autism Awareness Month” came to an end yesterday. In each of the 10 sitting days of the Senate, one or more Senators got up to make a speech. Yesterday was the turn of the Honourable Art Eggleton, former Mayor of Toronto, Cabinet Minister in the Chretien government, and chair of the Senate committee that produced the “Pay Now or Pay Later – Autism Families in Crisis” report of 2007. I don’t recall him actually doing much over the past 10 years to keep his committee report from being relegated to the dust collection shelves in the Library of Parliament, but perhaps I simply missed it.  Another Senator also spoke yesterday. The transcript is below.

I did not see anything this past month in the House of Commons about autism (apart from including it in a list of disabilities for which the disability tax credit is now a hot political potato again following the CRA’s recent crackdown). So what will happen next?  What follow up action is planned by the organizers of the roundtable that took place in Ottawa last week?  I have no idea.  Senator Munson and Eggleton will likely retired in a few years….and maybe Senator Wanda Bernard will carry the torch…and organize another anniversary roundtable in five years or ten (or more).   I hope I’m wrong, but from what I see at the federal level, the two things looming on the horizon that may provide some action are: (1) the Liberal Party working group’s expected report on the policy resolution about funding autism treatment in Medicare, and (2) the expected PHAC first report on autism prevalence rates in Canada.  The report is expected to be issued next year and should raise questions about what needs to be done and what the governments of this country should do. However, it will be interesting to see if the federal Government will issue the report in such a way as to attract media coverage (e.g., full press conference, etc.) or whether they will nonchalantly issue it on a Friday at 4:59 p.m. without any press conference, etc.  We’ll see..

From Senate Debates, Tuesday, October 31, 2017:
<h2 id=”97″>Autism Families in Crisis</h2>

<h3 id=”98″>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. Art Eggleton: </b>Honourable senators, I rise today to speak to the inquiry on autism tabled by Senator Munson.

I had the pleasure of chairing the Standing Senate Committee on Social Affairs, Science and Technology when we conducted the study of<i> Pay Now or Pay Later: Autism Families in Crisis</i>. It has been 10 years since that study was completed, yet we are still contending with some of the very basic problems we encountered a decade ago.

Over the course of that study, the committee struggled not only with the complexity of the issue but also with the varying opinions that were on offer. For example, the committee heard, on the one hand, that although there has been a rise in the number of cases of autism, this was due to increased sensitivity and changes in the diagnostic criteria. On the other hand, other witnesses stated that there is in fact an autism epidemic of staggering proportions.

Moreover, we are still not entirely sure what causes autism in the first place. Research on identical twins suggests that genes likely play a dominant role, and yet other studies have suggested that environmental factors play a role as well.

That these debates are still ongoing highlights the complexity of the issue. Yet, our job as policy-makers is not to debate the science; rather, it is to take what we know and try to make life more manageable for the individuals with autism and their families.

What we know is worrying. At the time of our study, 1 in 166 Canadians per year were being diagnosed with autism spectrum disorder. Today it is 1 in 68.

Being autistic or having an autistic family member increases your chances of financial hardship. A staggering 80 to 85 per cent of adults with ASD are unemployed or underemployed. On average, the cost of raising an autistic child in Canada is estimated to be at $60,000 a year. Compounding the problem is that, more often than not, one parent will quit their job to care for the child.

Our study contained a number of important recommendations meant to tackle these and many other issues, the most important of which was that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy. Ten years later, we are still not there.

This failure to act has had very real consequences. In 2014, the Senate Liberals held an open caucus on autism. We heard testimony from those with autistic children, and those with autism themselves. What we heard were stories of families uprooting their lives to move where they hoped better programs would be available. One family moved from Ontario to Quebec because they could not find an appropriate level of service in French. Another family actually moved to Australia because of inadequate supports here.

These and other stories highlight a missed opportunity. Continuing study is finding that we are squandering the potential of those with ASD. In the workplace, many of the characteristics you typically find in someone with autism make them suitable for certain professions. For instance, some individuals with ASD will demonstrate an uncommonly focused interest in a particular subject. This can be a boon for an employer if that interest fills a need.

I read of one individual with Asperger’s syndrome who, when asked what he most enjoyed about his job, answered, “solving software engineering problems.” Then he was asked what his favourite hobby was, and his reply was “solving software engineering problems.”

What is good for the individual is also good for society. An autistic individual with gainful employment is one less person who relies on social services to get by. Of course, not all individuals with autism will succeed in the workplace, but too many are not even being given the chance.

In the 10 years since our study, the method of diagnosis has also advanced. By the age of 2, a doctor can often discern from a questionnaire filled out by the parents whether a child has autism. If caught at such a young age, certain treatments can encourage learning and interaction during a time when the brain is most malleable. Yet, the average age of diagnosis in Canada is four and a half, often too late for these therapies to have their intended effect. That is a shame. One American study showed that if caught early enough, these therapies paid for themselves within eight years by reducing the need for extra help in school.

That, honourable colleagues, is just one example of what is meant by “pay now or pay later.” The right investments today can prevent higher costs in the future. More important, such investments will go a long way in improving the circumstances of those diagnosed with autism and their loved ones.

I would ask you to join Senators Munson, Housakos and Bernard in calling on the federal government to act on the recommendations of our report. Only then can we begin to improve the lives of those affected by autism in a very meaningful and lasting way.

<b>Hon. Frances Lankin: </b>Honourable colleagues, I’m pleased to rise for some relatively brief comments on this. It would have been a bit longer, but Senator Eggleton spoke to a number of the issues I wanted to raise.

First may I extend a tremendous thank you, Senator Eggleton, to you, to the members of the committee and to the Senate for having tabled this very important report 10 years ago. It is difficult for us to see that so many of the recommendations have yet to be enacted at all or have been enacted in part. We had then, and we still have now, a piecemeal approach to working with individuals with ASD and their families, fragmented within provincial jurisdictions and across provincial jurisdictions.

(1710)

Thus the call for a national strategy, I think, is a compelling and necessary one for us to continue to focus on. I also add my thanks to Senators Munson, Housakos and Bernard. In particular, Senator Bernard hosted an event for us during Autism Awareness Month that allowed some of us to meet with advocates from the community. I found that very helpful. It was good learning and helped to refresh facts that I knew once and had lost track of. I spent some time in the Ontario legislature and this was a big issue then. That was many years ago and it remains a big issue with largely the same things being said.

When I thought about this and listened to the kind of remarks people have made, there’s been a tremendous focus on children with autism. Senator Eggleton’s quite right; if we can get to young children with the kind of therapeutic interventions at an early enough age, we can make a huge difference. I think governments often groan at the phrase “If you invest now, you’ll save money later,” because the recapturing of that and the reinvestment of that is always difficult, but again it is such a compelling argument to make. We are spending money on treatment and intervention at a time, perhaps, when they are less helpful and less preventive than they could be.

So it’s important for us to, once again, understand the most recent evidence and understand that the programs that we are supporting and investing in with taxpayers’ dollars are having the biggest impact that they could.

As I started to think about all the children who we still don’t have the right resources for, I also thought about the children who, as parents and families call it, “time out of our system.” They reach an age where the supports that are available through the health system and/or through the school system are no longer available for them. More and more, we have a larger number of citizens who are being diagnosed with this who are becoming adults and living adult lives with all of the hopes and aspirations that all of us have and would have for our children but have not had the supports along the way. And once they turn 18, there’s very little available for them.

In my office we did a little bit of work trying to find information on autism and adults, and there’s not a lot. There are references to what we don’t know.

There are references, as Senator Eggleton said, to the diagnosis rate that has increased. Four years ago now, when there was an Ontario-based report released out of the University of Toronto, the rate was 1 in 88 and as you said now it’s 1 in 68. No one knows whether it is better diagnoses or whether it is later onset or whether it is a combination of those things. We just don’t know. We don’t have enough information.

But we do know that there’s a growing population of adults who are living with ASD, and there is a much broader description of the syndrome involving people who are at a high functioning or Asperger’s level right through the whole spectrum.

One of the things that really concerned me when I looked at this report from four years ago from Ontario — it is entitled <i>Diversity in Ontario’s Youth and Adults with Autism Spectrum Disorders: Complex Needs in Unprepared Systems</i>.

The news coverage at the time — I appreciate Dylan Odd in my office went back and searched and found a<i> Toronto Star</i> article that called this a groundbreaking adult autism survey and it reveals a mountain of unmet needs.

At that time they were talking about 52 per cent of people with high-functioning autism or AS, Asperger’s Syndrome, were diagnosed before 21 years of age. That means there is a larger number of adults being diagnosed within the spectrum. I think we have to really look at what happens to those individuals.

We know that many of them report that they have multiple medical conditions. I won’t go through them all, but they’re also prescribed multiple types of medication. We know that many of them have taken some post-secondary education, have completed degrees, certificates, diplomas, bachelor degrees, masters degrees. In this study of several hundreds of people, there was a number who had completed MDs, PhDs and LLBs. Those people and those skills and those credentials doesn’t mean that it translates into a life of productivity and employment or economic sustainability for oneself or one’s family.

In fact, we know that of those who are employed, the majority of them earn less than $30,000 a year. That was four years ago. I suspect that number isn’t much different now.

Why do I focus on that? We know that 4.3 million Canadians with ASD are living in poverty. We have a poverty problem in this country. We know that people with other mental health issues, a large majority are living in poverty. We know that employment is such a necessary underpinning of good social structure and connections, in fact, leading research in the last few years from the Centre for Addiction and Mental Health puts forward that the aspiring workforce — that’s the name they give people who have had mental health challenges, ASD challenges, psychiatric challenges. Survivors all over the system. Many people have multiple interconnections of those things. The aspiring workforce is what they call them. For people to have connections in a workplace builds a social foundation to their lives that is absolutely critical.

One of the other statistics in this report referred to the number of people living with ASD. I’m not finding the exact reference right now, but I will. A number of people living with ASD find that they have less than one social interaction a week with others. Can you imagine the sense of isolation? Can you imagine the deprivation of stimulation? Can you imagine the attendant mental health problems that come along and on top of the ASD? It is an issue for us to understand more and to certainly address.

In looking at the incomes of adults with ASD, those who are earning under $30,000 — this is an Ontario-based survey — the majority of them are gaining support from the Ontario Disability Support Program, which is the side-by-side program with Ontario, essentially, welfare and disability, if I can put the two together in that sense. It’s one program, but there are two streams.

When I participated in a review of that program, we found that the fastest-growing area of reliance on broad social assistance was in the area of disability support, and the highest presenting issues or disabilities, along with the second presenting issue, were mental health issues. Exponential growth. ASD is one subsection of that, but again, there are many interrelations.

How do we get at that issue? Again, we don’t have all the answers, but workplace accommodation, what does that mean for people who are facing challenges that may be behavioural, that may be social, the way in which we work and interact with each other? We found in the work that we did that a tremendous amount can be accomplished with a focus on job development, so working with employers to actually develop jobs, shape them and make a useful job, a productive job, a job that supports the goals and aims of the corporation or the organization but can be worked and adapted to the individual needs of a person on Ontario disability support who wants to try to re-enter the workforce or to enter the workforce in the first place.

So there is a route. There are some very well-developed pilot projects and there are some things that we can build on, but it has to be done in a way that connects it with the other supports, programs and treatments that are a necessary part of responding to ASD and to the growing challenge across our country.

(1720)

That’s why, although most of this rests within provincial jurisdiction, the idea of lifting our eyes to a national strategy, to a federal-provincial coming together to map what’s happening, identify the gaps and close those gaps in a coordinated way is absolutely essential to really make progress on behalf of individuals with ASD, their families and the organizations providing service to them.

The last thing I want to comment on is that when we think about this issue in relationship to the statistics — 4.3 million people with ASD who are living in poverty — we understand that even the social support programs that are there, as I mentioned, are not doing the job they need. That speaks to the reform that’s required within those particular programs.

However, what disturbs me the most is those who don’t even make it to being diagnosed or don’t make it to a program like the Ontario Disability Support Program and similar things in all provinces, and those are the people who end up on base welfare programs — often men, often living in shelters, often homeless, doing day shelter or overnight and then out on the streets — and without the connection to supports, the connection to the reality of the world around them and the connection to skills to be able to even think about entering employment. That’s a group that’s completely lost. We only see them on street corners and grates, and we don’t understand the connections to all these broader issues that we have.

Honourable senators, I wholeheartedly support the call for a national strategy. I hope that in that we can, yes, do the very necessary work to get to children as young as possible and to change the shape of their futures, but I hope we won’t forget the growing numbers of adults living with this disorder who are isolated in their homes and kept out of the workforce because we don’t do enough to accommodate, understand and develop jobs for them and who could be living a much more productive life and being a vibrant and giving part of our communities. Thank you very much.

(On motion of Senator Enverga, debate adjourned.)

[Andrew Kavchak]

Hi Folks,

More speeches in the Senate yesterday…

Thursday, October 26, 2017
<h2 id=”74″>Autism Families in Crisis</h2>

<h3 id=”75″>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. Kim Pate: </b>Honourable senators, I rise today to speak on the inquiry of Senator Munson calling attention to the Senate of the tenth anniversary of its groundbreaking report<i> Pay Now or Pay Later: Autism Families in Crisis</i>.

[<i>Translation</i>]

I congratulate Senators Munson, Housakos, and Bernard for their exemplary leadership on this file and for raising public awareness about autism.

[<i>English</i>]

Autism affects every sector of society. A national autism strategy must be alive to the systemic barriers and negative attitudes that impede access to ASD-related services across multiple sectors.

The criminal justice system is no exception. In fact, research over the past two decades shows that people with ASD and other developmental disabilities are seven times more likely than the general population to come into contact with law enforcement during their lifetime. Since co-occurring mental health conditions such as anxiety and depression are common in individuals with ASD, prisoners with ASD suffer in prison environments.

Honourable senators, we must ensure that people with ASD and other disabling mental health issues are not imprisoned because they cannot access the resources and therapeutic support they need in the community.

Yet, just this past week two such situations were brought to my attention.

One is a young man whose parents, one a police officer, were encouraged to call the police when their adolescent son’s aggressive outbursts became difficult for them to manage. They were incorrectly advised that there would be more services for their son in the criminal justice system. This was not true, and now they have a more unruly son whose trust in his parents has been severely shaken and whose parents are now expending thousands of dollars on lawyers and medical assessments to try to extricate him from the system. If they manage to do so, they will then continue to experience the pre-existing series of challenges a result of the inadequacy of the supports, services and resources available to provide much-needed assistance.

(1510)

The other situation involves a woman serving a prison sentence, a woman the prison staff consider to be so incapacitated that they have argued that she is not capable of consenting to assessments, much less treatment. Her mother has advised that her daughter was previously diagnosed as autistic.

She is segregated in a maximum-security unit, as this is the easiest place for staff to manage her self-harming behaviour. When they deem her to be out of control, they pepper-spray her. Then when they take her to the shower area to decontaminate, instead of staff turning on the water for her or advising her to do so herself, they leave her there. Instead of turning on the water to relieve the burning sensation of the pepper spray, she responds to the pain by punching herself in the face. One videotaped incident records her bashing herself some 100 times. The day after that incident, not only was her skin burned from the spray, but she was so battered that she was described as looking as though her head and face had been beaten with a bat.

These are but two of the reasons we need to invest now in community-based supports and services. It is also why we must ensure that those we do not prevent from being criminalized or imprisoned are moved out of prisons and into provincial or territorial health services. In the federal prisons, section 29 of the Corrections and Conditional Release Act allows for such transfers for prisoners for the purposes of accessing necessary health care.

Families must be equipped with adequate resources and guidance to support children with ASD. As senators who have spoken before me have underscored and as research supports, intervention at an early age can improve a child’s chances of reversing some of the effects of autism. However, most families struggle to bear the enormous costs of raising a child with autism.

The situation is particularly dire for children and their mothers who are incarcerated and those who live below the poverty line. Most mothers who are incarcerated are the sole providers of their family’s needs at the time of their imprisonment. Their imprisonment carries with it devastating consequences of depriving their children of care. This burden is especially unbearable for children in need of special care, including children with autism.

When Nelson Mandela, himself a former prisoner, came into power in South Africa, he ordered that all mothers with children under the age of 12 be freed from prison. In justifying his decision, he characterized it as part of “A collective effort [that] has to be launched by the government, civil society and the private sector to ensure that every child is looked after, has sufficient nutrition and health care.”

As we look toward a national strategy for autism, we too must recognize and support the role that mothers play in caring for their children’s health on a day-to-day basis, particularly in families lacking other resources for care. We must ensure that the correctional system does not continue to further burden impoverished children with ASD by sentencing mothers and their children to separation.

We also need to address the stigma that prevents parents with criminal records from providing educational supports to their children with ASD. Some of the mothers I know who wish to volunteer to provide in-class support for their children are prevented from doing so because they have criminal records. Community-based alternatives to imprisonment, as well as increased access to resources envisioned by the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>, will be instrumental components of any viable strategy to help people with ASD.

We must also be mindful that autism does not discriminate on the basis of race, ethnicity or socio-economic status. As such, it is a grave injustice to allow these differences to obstruct a national autism strategy. Indigenous communities have struggled to access ASD-related services because of systemic racism and social isolation. Any framework for a national autism strategy must be sensitive to the needs of marginalized groups if we are to ensure fair and effective delivery.

Honourable colleagues, many of us call on you to endorse the recommendations of the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>, as well as the removal of systemic barriers across diverse communities and within the criminal justice system. Both approaches are integral to a nationwide strategy committed to helping people with ASD and the families that support them.

Thank you. <i>Meegwetch</i>.

<b>Hon. Jane Cordy: </b>Honourable senators, I am pleased to speak today to Senator Munson’s inquiry calling our attention to the tenth anniversary of the report<i>Pay Now or Pay Later: Autism Families in Crisis</i>. I was fortunate to have been a member of the Standing Senate Committee on Social Affairs, Science and Technology 10 years ago when we studied the issue of autism in Canada and the challenges that Canadian families faced accessing specialists and support programs.

I want to thank Senator Munson so much for continuing his excellent work with the autism communities across Canada over the past 10 years.

Honourable senators, a lot of progress has been made over the last 10 years. The federal government has brought forward assistance and tax benefits, and there have been investment and employment assistance initiatives. The committee’s report was also the catalyst for the creation of the Canadian Autism Spectrum Disorder Alliance, CASDA. It was formed in July 2007, shortly after the release of the Senate report. The alliance’s mission states:

CASDA is a coalition of organizations and individuals developing a comprehensive National ASD Framework. It is committed to ensuring the implementation of a comprehensive National ASD Strategy that addresses critical gaps in funding and policies, which are preventing individuals with ASD and their families from exercising their equal rights as Canadians.

Our report made it clear that for real progress, a unified effort would be required, by both government and the autism spectrum disorder community. Unfortunately, honourable senators, what has not changed is the need for a national autism strategy in Canada. One of the most important recommendations — if not the most important recommendation — from our report was the development of a comprehensive national autism spectrum disorder strategy here in Canada.

It is now 10 years later, honourable senators, and we still do not have a strategy.

Progress has been made in the areas of autism advocacy, awareness, understanding and diagnosis, thanks to the work of people like Senators Munson, Housakos and Bernard, and those families facing the challenges of autism. It can be disheartening, however, to hear time and again that the same issues and challenges families face today are many of the same issues and challenges we heard about 10 years ago when the Standing Senate Committee on Social Affairs, Science and Technology tabled the report<i> Pay Now or Pay Later: Autism Families in Crisis</i>.

Senator Munson pointed out in his speech that a child who was eight at the time the report was released is now 18 years old and is an adult. As an adult, they can no longer access programs that are available to children. Assistance programs and supports become more limited as children with autism spectrum disorder become adults. ASD is a lifelong disorder, and Canadians on the spectrum require lifelong support programs to thrive and fully participate in their communities.

I remember when I was teaching elementary school, and people referred to autism as a children’s disorder. It’s not a children’s disorder. It’s a lifelong disorder that you will be faced with for the rest of your life. We can’t stop programs for children and not have them for adults.

Yesterday was Autism Awareness Day at the Senate. To mark the occasion, Senators Munson, Housakos and Bernard took part in a Senate of Canada first: They hosted a Facebook Live panel discussion. The panel included participation from various autism spectrum disorder stakeholders on Parliament Hill. The event was truly a success, and I was able to watch it on YouTube later in the day. Honourable senators, it was a wonderful event, and I encourage those of you who did not have a chance to attend or watch the panel live to seek it out later today or over the weekend on YouTube.

Over 1,400 people checked in on the panel online during the broadcast and participated with positive comments. And as of this morning, the communications team has told me that the event has now reached almost 9,000 people.

(1520)

That number continues to increase, and will increase further if each of you watches it this weekend. The panel discussion touched on many of the issues the autism community faces, including lack of services, children aging out of programs and therapy, and lack of concrete statistics.

At the end of the panel, the floor was opened to those in the room who wished to speak. Jack, a 13-year-old son of one of the presenters, spoke to the panel about his experience of being teased at school because of the stigma attached to living with Autism Spectrum Disorder and the lack of understanding regarding it. It was very moving to listen to Jack speak. As Autism Nova Scotia says in its mission statement: Understanding—Acceptance—Inclusion.

Another panel participant, Esther Rhee, National Program Director of Autism Speaks Canada, succinctly addressed the one major missing piece on true progress on autism in Canada when she said:

In order for us to move forward, we must work collaboratively. And the federal government is the driver of collaboration and in-field advancement.

She went on to say:

In order to make the monumental gains that are required in our community we do require the federal government to come onboard and support the development of a national autism strategy.

I want to thank Senators Munson, Housakos and Bernard for their participation in such a positive event. I would also like to thank the Senate Communications team for their hard work in making the event happen. The Communications team in the Senate continues to excel at sharing what is happening in the Senate.

Honourable senators, it is encouraging to see the Senate speak with one voice on such an important issue that affects so many Canadians and their families — families who are still in crisis. After 10 years, I am hopeful that the federal government will hear the Senate’s call to action. It is time for the federal government to move forward with a national Autism Spectrum Disorder strategy and to be the driver of collaboration.

(On motion of Senator Mercer, for Senator Eggleton, debate adjourned.)

[Andrew Kavchak]

Here’s a great example of some grassroots agitation and successful lobbying…

An outfit in Ontario called the “Ontario Autism Coalition” (https://ontarioautismcoalition.com/) conducted a survey of families with kids with autism about their views with respect to services at school.  Not surprisingly, a majority of parents expressed the “not satisfied” feeling.  Yesterday I was listening to CBC radio in the late afternoon and on the news program there was a major report about the OAC’s survey and its results.  I wrote to the OAC team to congratulate them on their initiative!  Hopefully the Minister of Education will take note and do something.

(Side note: the founders of the OAC came to my home here in Ottawa over a decade ago when we organized a protest in front of the constituency office of the then Premier, Dalton McGuilty, oops, I mean McGuinty).  They are a truly good group of people working hard (and for a long time) for the betterment of conditions for people with autism in Ontario.

Here is the CBC story on the web:

http://www.cbc.ca/news/canada/toronto/autism-education-rally-queenspark-1.4372525

[Andrew Kavchak]

Hi Folks,

Do you think the Senate sent an invitation to officials from the federal department of extortion, oops, I mean the “Canada Revenue Agency” (CRA) to their “Autism Awareness Day” roundtable which was part of the Senate’s “Autism Awareness Month” campaign?  I doubt it, and that’s too bad, for the day after the roundtable and resource fair, the Ottawa Citizen newspaper had an article about the latest CRA initiative with respect to the Disability Tax Credit.  Apparently, people who have been able to claim the credit for years (decades) are now having problems (note the appearance of the word “autism” in the first line of the article.

I remember in the past that the Auditor General would occasionally conduct audits of Revenue Canada and report that there were billions of uncollected taxes payable. Of course, the Minister would always  try to shore up the perceived integrity of the tax system by using the standard “deny it” response.  However, while the government now drowns in a growing deficit and starts to feel the next election’s soundtrack starting to take shape, the tax collectors are now reinvigorating their “guilty until proven innocent” approach to tax collection and intensifying their squeezing of the sponge by focusing on the most vulnerable…the “mentally disabled”.  Here’s a question: who, in this context, is the real “mentally disabled” person?

Personal confession here: my first job in the government was at Revenue Canada where, in December 1990, on the eve of the implementation of the GST, I started working at the only place that was hiring in Ottawa at the time.  I was a Rev Can “policy person” for two years before I managed to orchestrate my escape to another department.  While working at Revenue Canada I experienced something that I never felt at any other time in my life: the desire to ignore (or destroy) my alarm clock in the morning, as it was the only place which I felt I did not want to go and cringed every time I thought about it (regrettably, the need to earn some funds to pay the bills took precedence).  These type of articles suggest to me that not much has changed in the atmosphere, culture or approach to tax law interpretation and collection practice of the place.

http://ottawacitizen.com/news/purported-cra-clampdown-leaves-mentally-disabled-increasingly-restricted-from-key-government-tax-credit/wcm/e64cc0ae-5a31-4a9c-848a-754427234fed
<h1 class=”entry-title”>Purported CRA clampdown leaves mentally disabled increasingly restricted from key tax credit</h1>

Sources say that some lifelong sufferers of mental disabilities have been cut off from the disability tax credit after having received the credit for decades

JESSE SNYDER

Published on: October 26, 2017 | Last Updated: October 26, 2017 9:14 PM EDT

OTTAWA — Sufferers of autism, bipolar disorder, schizophrenia and other mental health issues are the latest victims of a clampdown on access to the disability tax credit by the Canada Revenue Agency, according to several accountants, mental health associations and other advocacy groups.

Sources told the National Post that some lifelong sufferers of mental disabilities have been cut off from the disability tax credit, or DTC, in the past two or three years after having received the credit for decades.

The statements come after an uproar in Ottawa earlier this week over restricted access to the DTC for sufferers of diabetes, which caused a firestorm of accusations toward the Trudeau Liberals from the opposition NDP and Conservatives. The Liberals have in recent months faced widespread criticism over proposed tax changes directed at private corporations.

Advocates say similarly restricted access to the DTC has occurred for mentally disabled people, largely due to a change in the language used to determine whether they are adequately disabled to be eligible for the tax credit. That has led to a higher number of people appealing rejections for DTC funding, advocates and tax consultants say.

“What the CRA has done is set that bar so high that it is almost impossible for people to apply,” said Lembi Buchanan, head of the Disability Tax Fairness Campaign.

Buchanan represents several severely disabled people who have recently been denied access to the credit. One such person, a woman with bipolar disorder who Buchanan declined to name, had been receiving funding under the DTC for 23 years before being cut off in 2015, she says. Another person, an autistic male who had been receiving DTC funding for 27 years, was cut off in 2016.

Buchanan recently began representing mentally disabled people who have lost eligibility for the tax credit, and has taken several cases to The Tax Court of Canada.

The revenue ministry acknowledged that there has been criticism about access to the DTC for mental health patients, but could not verify whether it was a systemic problem. Anecdotal complaints around restricted access to the DTC have been ongoing for some time, but the public does not have access to the number of people denied or forced to reapply through the CRA.

“This is a long-running issue,” said John Power, the press secretary to Revenue Minister Diane Lebouthillier, in a phone interview Thursday.

Power said that the ministry has taken steps to make easier access to the DTC, particularly by making application forms shorter. Both the number of people accessing the credit and the total money put toward the DTC have been steadily growing, he said. The office could not confirm whether access for mentally disabled people specifically has also been growing.

The CRA did not respond before publication time.

Critics say tougher access to the DTC is part of a tightening at the CRA, which, a number of tax consultants allege, has been forcing higher numbers of people into lengthy and sometimes expensive appeals processes in a bid to boost revenues.

“This is a symptom of something that seems to be going on in the CRA which is trying to collect more money — and not just collect from people who owe it, but create more people who owe it,” said Peter Weissman of Cadesky Tax in Toronto.

“What they’re doing, it seems, is trying to squeeze every last dollar out of the system without necessarily looking at who in fact is getting caught in the crossfire.”

Weissman and Buchanan are both currently lobbying to reintroduce the Disability Advisory Committee, a body that used to monitor CRA’s access to tax credits for mentally and physically challenged people that was scrapped by the Harper government in 2006.

The pair has asked to reinstate the DAC through letters to the Department of Finance. The department said in response in a June 02, 2016 letter that it was “seriously considering” comments from Canadians about improving CRA access to tax credits, but hasn’t yet brought back the committee.

Observers say part of the trouble for mentally disabled people is that their DTC eligibility often expires without the person’s knowledge, usually without a notice letter warning them to reapply. After reapplication, many are denied and then forced to appeal the CRA decision.

The number of people going into appeals has increased a lot,” said Ella Huang, the executive director of the Richmond Centre for Disability in B.C.

Huang said the number of people being rejected for DTC funding has risen from roughly one in 10 to something closer to five in 10, though she stressed that it was difficult to put hard numbers on the levels of reapplications and rejections. The Richmond Centre assists disabled people in applying for tax credits like the DTC.

Observers say that people who are deemed ineligible for the DTC also lose access to the registered disability savings plan (RDSP), a program introduced by former finance minster Jim Flaherty in 2008.

Losing access to the plan means that recipients of the DTC often have to pay back government grants and bonds that were awarded when they were deemed eligible for the credit.

Tim Ames, the executive director of Vancouver-based Planned Lifetime Advocacy Network, said one family was forced to pay back as much as $15,000 in bonds and government grants after the death of their autistic son.

“It’s a very stressful thing for families to have to go through,” Ames said.

PLAN supports about 65 families with mentally disabled members, and helps roughly 500 mentally disabled people every year apply for the DTC through its hotline.

Ames said the CRA has issued an increasingly high number of “secondary assessment forms” to ask receivers of DTC funding to resubmit their credentials for the credit, but said there appears to be little consistency in which recipients are asked to reapply.

“It seems to be very arbitrary, there doesn’t seem to be a system behind it.”

 

[Andrew Kavchak]

Hi Folks,

The Senate Facebook page has a video recording of today’s roundtable on Autism Awareness which is available here:

https://www.facebook.com/SenCanada/?hc_ref=ARRojBN5zPouBwEvmSWTtKOuo5ReDLY91uL-GqKkJXR5iCU4YlOQTVuBjG6fwngxEZA

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.

From: https://ca.yahoo.com/news/quebec-barber-went-extra-mile-211822638.html
<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 Press

[Andrew Kavchak]

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.

(1550)

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.

[Andrew Kavchak]

Hi Folks,

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?

From: http://www.ourcommons.ca/DocumentViewer/en/house/latest/hansard

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.

[Andrew Kavchak]

Hi Folks,

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.)

[Author]

Replies