[Andrew Kavchak]

Hi Folks,

Here is a video about autism and the need for a National Autism Strategy in Canada that includes access to IBI/ABA treatment through Medicare, which I hope you will enjoy.

https://www.youtube.com/watch?v=UmG1-95PYIE&feature=youtu.be

Cheers,

Andrew Kavchak (Ottawa)

[Andrew Kavchak]

Hi Folks,
For those who may be interested in seeing pictures from the rally on the Hill that I wrote about in a previous post, please check out:
http://www.autismonthehill.ca/2016/

There are pictures of the crowd, the politicians, and the signs…including the one that I was carrying calling for a National Autism Strategy.

Cheers,
Andrew

[Andrew Kavchak]

Hi Folks,

Sunny day here in Ottawa. Perfect day for an outdoor autism rally on Parliament Hill.

For the past few days the annual CASDA conference has been going on and I found out that there would be a rally on the Hill at noon. I love it when things like that happen, so I went with my sandwich board sign, petition clipboard and my autism handout sheet calling for a National Autism Strategy.

Well, a lot of people showed up. Many parents in Ottawa who are upset about the recent provincial government cuts to the IBI program were out in force.

Then the speakers started taking the microphone. I don't want to sound jaded, but this is Ottawa, and the substance is often missing.

The event was hosted by a grandma who started a new "kickstart" type of program to help guide parents of toddlers that look like they might be on the spectrum.

She started off by introducing a young girl who claimed she was autistic and liked it and liked being different and wanted people to stop bullying her and to have more faith and confidence in her, etc.

Then another 17 year old boy spoke and claimed to have autism and was happy having a different point of view. He wanted people to support him and others like him and give him confidence, etc.

Both of these speakers were exceptionally high functioning and I never really understood what was the purpose of having such people speak at rallies where there were many parents of non-verbal kids who are desperately begging for access to IBI (which those speakers did not seem to need, and certainly made no reference to treatment).

Then Seamus O'Regan spoke. He is a new MP who used to be a host on Canada AM. Well, he said that his cousin's kid is autistic and he saw first hand the challenges that the family went through. Then he gave a shoutout to the Dobbin family (wealthy supporters of autism programs in Newfoundland).

Then an MP by the name of Matthew Dube was supposed to speak, but had his statement read in French by someone else. In it, he said that he will work with Mike Lake and others to get the resources our community needs.

What? Work with Mike Lake to get resources that our community needs? I could not believe what I was hearing. For some background on how Mike Lake thwarted our community getting what it needs in the past, please see:
https://featbc.org/downloads/FEATBC_release_02_26_07.pdf

Then Mike Lake was introduced. The host indicated that whenever he speaks on Autism Awareness Day in the House of Commons, he always mentions his son, and everyone listens, and then gives him a standing ovation. In this way, he is helping, apparently, by raising awareness. This is in sharp contrast to my reaction whenever I hear him speak, which usually involves my getting these sort of guttural gagging reflexes.

As is so easily predictable, he spoke about….his son Jaden and Jaden's sister who loves her brother. We all get that, don't we? Now, from a public policy perspective, what needs to be done? What can be done? What will be done? Anything on that? Nope. Nothing. Zilch. Not a thing.

Then Senator Jim Munson spoke. He's our champion the Hill. He spoke about the importance of parents leading the cause and being the voice for the nation to articulate what governments can do. Then, being the smooth politician that he is, he paid his respects to the previous Conservative government's getting the "Ready Willing and Able" and "RDSP" programs going, which he said were like a social infrastructure base that we needed to keep building on. Then he concluded by saying that he will retire in five years, but will keep working until we have a National Autism Strategy in place.

OK, so, one speaker mentioned a National Autism Strategy.
No one mentioned treatment.
No one mentioned IBI or ABA.
In fact, no one really mentioned any problems.
If I were not familiar with the real problems, I would have been under the impression that this was a party.
We are way too docile in Ottawa.
So…see you next year!

And afterwards I spoke to some people I knew and had met before and some new people that I was meeting for the first time. It was pleasant to meet folks from BC!

But then I notice Mike Lake out of the corner of my eye. Last time I saw him a few years ago he stuck his hand out towards me, but I refused to shake it. This time he followed me as I left the demonstration and said he wanted to talk to me. I told him that the desire was not mutual, but when I stopped to fold up my sandwich board sign he ambushed me and I got those gagging reflexes again. I told him that he is the only MP I ever met who returned the petition I gave him and refused to table it…and I did not see any change in his approach since and that it seemed to me that he was always an obstacle to our community. He then said that he did not know much about petitions 10 years ago but he would have tabled it if he had known what he now knows..namely, that petitions don't have to come from your constituents but can be from any Canadians.

I was still gagging…

[Andrew Kavchak]

Hi Folks,

Here is another sad article about the state of affairs in Ontario…

From:
http://www.durhamregion.com/news-story/6482462-majority-of-durham-children-on-autism-therapy-waiting-list-will-be-booted-under-new-rules/

Majority of Durham children on autism therapy waiting list will be booted under new rules

Provincial cutting off kids five and older from intensive behavioral therapy wait list

By Reka Szekely

DURHAM — Durham parents say they’re “just gutted” to learn that their children with autism are being booted from a wait list for intensive behavioural intervention therapy after years of waiting for services.

The provincial government announced recent changes that narrow IBI therapy to children aged two to four as experts say that’s the most effective window for intense intervention.

But in Durham Region, the wait list for IBI therapy is three to four years, which means that the majority of the children on the wait list — 81 of 131 — will be removed as they are five or older.

Aaron Fogelman and Saralyn MacDonald have been told their son Jacob is second on the list in Durham, but he is now five and will turn six in July. He’s been on the waiting list almost four years, since shortly before his second birthday.

Even if Jacob, who is non-verbal, is able to begin IBI therapy before the May 1 deadline, his parents question whether he’ll receive the full year or two other children receive or whether it will be cut off after a few months.

“We’ve jumped through every hoop, done everything they asked and it’s not us they’re punishing, it’s our kid,” said Mr. Fogelman. “He’s never done anything wrong.”

Mr. Fogelman and Ms. MacDonald were one of three Durham families to meet with NDP MPP Jennifer French last week to discuss their fears.

Pickering-Scarborough East MPP Tracy MacCharles is the minister of Children and Youth Services and the lead on the file. She said her heart goes out to families who are on the wait list, but the government is following clinical advice.

The government plans to invest $333 million in autism services which includes applied behavioural therapy which children on the IBI list can transition into.

Ms. MacCharles said families who are removed from the wait list will receive a one-time funding of $8,000 which they can choose to use in a manner that works for them, whether that’s for speech therapy or respite services.

“That means they get service right away instead of continuing to wait,” she said. “And once that money is spent, the families will be eligible for improved public autism services just as always and that program will be longer periods of time and tailored to individual children’s’ needs.”

But local families believe there is no substitute for IBI therapy which includes intense one-on-one work with children for 20 to 25 hours a week, a much more intense form of therapy than applied behaviour analysis which is delivered in 10- to 20-hour modules over a longer period of time.

The $8,000 is just a fraction of the $40,000 to $50,000 cost of IBI.

“It’s hush money,” said Tobi Riley, who met with Ms. French along with her husband Adam and son Mason. “That’s $8,000 and thank you for spending three years on the wait list and now my son’s not a candidate for IBI.”

Mason is four and also non-verbal. He is number 70 on the list currently, but they fear he’ll be dropped from it when he turns five in June. They understand that under ideal circumstances children should receive IBI therapy as early as possible, but that simply hasn’t been an option for them as they have already been waiting three years.

“I would be content with one year, I thought we were going to get two, but I know it would be leaps and bounds for him,” said Ms. Riley, who has collected 500 signatures on a petition opposing the change.

Ms. French and the NDP are advocating that children already on the list be grandfathered for IBI.

“The challenge with that proposal, as tempting as it may sound, is you’re leaving kids in IBI who are not in the right developmental window … if we were to do that even with our investments, we’re going to prevent kids under the age of five from getting the intervention that they need,” said Ms. MacCharles.

That’s cold comfort to parents who have spent years waiting and whose children will simply be skipped as a result of the rule changes.

“I’m starting to become jaded,” said Mr. Fogelman. “Every time the government spends money, I say why didn’t he get it? I don’t want to be that angry guy.”

[Andrew Kavchak]

Hi Folks,

Sometimes some blunt talk can be refreshing…despite all the years of lobbying, and the funding our provincial and national "societies", etc. when the government wants to cut…they don't mind picking on the weakest who don't vote. Now, from what I have heard in the media, the government in Ontario has introduced a new autism program which limits ABA/IBI to ages of 2-4 (the historic cutoff of age six is not being eliminated, it is being lowered to age 5!). Yup, we're going backwards. Below is a letter that tells it like it is.

From:
http://www.brantfordexpositor.ca/2016/04/06/autism-service-cuts-idiotic

I wonder how the powers in charge decided that autism ends at the age of five and children no longer need after-school supports. These supports might be day care or trips to local places, with a personal support worker in attendance. But, as far as I know, autism does not end at five. It is a lifelong affliction.

This decision to end services for autistic kids is one of the most idiotic I have ever heard. It will mean thousands of people who have an autistic child will have to drop out of the workforce and go on social services. How does that saves money? There will be fewer tax dollars coming in and more going out. Thousands of people will be affected by this decision

But, then again, what smart thing have we seen from this provincial Liberal government since it came to power?

Dave Van De Cappelle

[Andrew Kavchak]

Hi Folks,

So April 2 was Autism Awareness Day.

In the House of Commons, Mike Lake, MP made the following statement on March 24 (before the House rose for another one of the endless "breaks")

Autism Awareness

Hon. Mike Lake (Edmonton—Wetaskiwin, CPC):

Mr. Speaker, April 2 marks World Autism Awareness Day and 18 years since my son Jaden was diagnosed.

Life with Jaden has not exactly been as we planned. He has never made the honour role or attended university or heard his name called at the NHL draft. In no way is this a disappointment. Those were simply not the right plans for Jaden.

To measure his value by IQ or income or goals and assists would be to completely misunderstand who he is. Jaden has a truly rare and beautiful nature, an immeasurable blend of honesty, authenticity, innocence and genuine love. It is an indescribable joy to witness him grow up with a childlike vulnerability and sense of wonder that the rest of us, sadly, lose over time.

Life with Jaden may not be what we had
planned, but we do not celebrate any less; we just celebrate different things. It is a lesson learned through experience and one I would not trade for the world.
_________________

While all of us parents can sympathize with Mr. Lake's love of his child, his annual message is one that could be delivered by any one of us. However, he, not we, is an MP, with the corresponding access behind closed doors to those with power to help improve the lives of people with autism and their parents. So when he speaks, he could tell the Parliamentarians, and all Canadians, of the challenges faced by those in the community, the injustice and lack of fairness in terms of access to healthcare, etc. and what needs to be done, and what he is prepared to do about it. Instead, nothing of the sort. Just more joy of being Jaden's dad, which we all get.

In sharp contrast, take a look at this statement made on the same date in the Senate by Senator Jim Munson:
__________________________
World Autism Awareness Day

Hon. Jim Munson: Honourable senators, I hope you mark on your calendars that April 2 is World Autism Awareness Day. We'll be on our break at the time; that's why I'm speaking today.

We are fortunate to have a day officially designated to learn about and demonstrate our respect for those living with autism. The legal and official recognition of that day happened right here in the Senate, and I'm very proud of what we accomplished together, an example of senators doing the right thing for our country.

In 2002, it was estimated that one child in 150 had autism. Today, the disorder affects an estimated one in 68. That's an increase of 120 per cent. Meanwhile, we hear reports of children waiting years to receive autism support services, often so long that they become too old to benefit fully from those services.

This was a headline of a news story issued only last November: "Over 16,000 children on Ontario wait lists for autism services: More kids are waiting than are getting support."

Recently, the Ontario government pledged millions for autism services, but I remain concerned it will not reduce those waiting lines. Our 2007 Senate report, Pay Now or Pay Later — Autism Families in Crisis, underscored the need for a national ASD strategy. A strategy would mean the federal government engaging all levels of government in building a national infrastructure for research and surveillance, for supporting all people with autism within their communities and for providing funding arrangements to meet their needs.

In recent years, the federal government has brought about a number of advancement, and I've always applauded the previous federal government for bringing them in. Last spring, for instance, it set aside $2 million to create and support the Canadian Autism Partnership to achieve improvements in priority areas. There are also disability tax credits and employment programs for adults with autism, such as Ready, Willing and Able, but the autism community needs more, much more.

It would have been nice to see something concrete for people with autism in this week's federal budget. I know advocates have spoken to the relevant cabinet ministers, and I am hopeful we will soon see more support.

At the very least, there is a federal responsibility for Aboriginal children and adults with autism. I sincerely hope that with the new money for Canada's indigenous community, the leaders of that community don't forget those with autism.

Autism has become so prevalent that it is clearly not about any particular social group, nor is it an issue with a political bent. It is a national issue. We're all in this together. What we need is a strategy that will guide us all in working collectively in the interests of people on the spectrum and in the interest of our society as a whole.

In this respect, please also mark on your calendars April 18. It is the Monday after the week of our return. It is the day when CASDA, the Canadian Autism Spectrum Disorders Alliance, holds its second annual autism summit. Senator Housakos and I, along with CASDA, and certainly MP Mike Lake, will be attending that summit and still pushing for what we deeply care about. There will be autism advocates from all the across the country.

The following day, April 19, there is a noon-hour rally on the Hill called Autism on the Hill. It is hosted by my friend Suzanne Jacobson, a grandmother of two boys with autism. Suzanne is a tireless advocate whose Ottawa programs called QuickStart and KickStart are being replicated across the country.

So, honourable senators, as we head into this Easter weekend, please think of her, her work and her family. And please be there on the Hill on April 19 for her and her family and for those families across the country.

Personally, I will never rest until we have a national autism spectrum disorder strategy. Thank you, honourable senators.

[Andrew Kavchak]

Hi Folks,

Well, as some of you may know, we have a provincial government here in Ontario that is, at least to me, a complete mystery. I'm never really sure what they are doing, although there always seems to be something in the news about the provincial deficit, etc.

Anyways, when cuts have to made, it is always easy to take from the weak and vulnerable. Especially those who can't speak up for themselves. Like disabled kids.

So…from the 680 News website, there is this gem of information…
http://www.680news.com/2016/04/02/autism-advocates-react-to-latest-funding-changes/

Autism advocates react to latest funding changes

Children with Autism who are over five years old will no longer be eligible for Ontario’s intervention program, impacting thousands of kids in the province.

The Ministry of Children and Youth Services will now only offer Intensive Behavioural Intervention (IBI) to diagnosed kids under five years old, saying this will cut the wait list times from two years to eventually six months.

“It’s created significant pressure on the system where now we have far more children waiting for services than children currently receiving services,” said Tracy MacCharles, Minister of Children and Youth Services.

Older kids will instead be shifted to the Applied Behaviour Analysis program, where they won’t be receiving as much support as they would be under IBI.

Regardless, while families with younger children are receiving early intervention, it’s those with older kids who are feeling left behind.

“It’s bittersweet,” said Margaret Spoelstra, Executive Director of Autism Ontario. “It’s absolutely heartbreaking to hear when you’ve been waiting for something and then to know that you’re no longer going to be able to participate in that program.”

Those who are currently on the wait list or in the IBI program, but no longer eligible under these new changes, will be given a onetime payment of $8,000 to go towards treatment costs.

“That’s an amount that will get them started but it wouldn’t be the same without being in the IBI program,” Spoelstra said.

The province will be mailing out 30,000 letters in the coming week to the families who are affected by this change.
___________________

Margaret Spoelstra has been the Executive Director of the Autism Society of Ontario for a long, long time. She won a Governor General's Order of Canada designation last year. I think it was for her outstanding work representing the autism community to the government. Or was it for representing the government to the autism community? I can't remember. Anyway, I am sure she will be promoted within the order in due course as her work will likely be perceived as deserving more recognition.

When my son was diagnosed, there was a waiting list of several years to get access to either funding or therapy services, and there was an age six cut off. Then there was a court case, appeals, and a government that said that it was going to remove the age six cut off, but, in reality they often came up with other grounds upon which to withdraw support. Now, if I get the story straight, the cut off will be age five? Sounds like we're going backwards. If this does not show the federal Liberals the need for legislative action, then what will?

[Andrew Kavchak]

Hi Folks,

The latest CDC report on prevalence rates just came out…still 1 in 68.

http://www.cdc.gov/mmwr/volumes/65/ss/ss6503a1.htm

Cheers,
Andrew Kavchak (Ottawa)

[Andrew Kavchak]

Hi Folks,

Would it not be an interesting development in Canada if politicians seeking the leadership of their parties were to unveil their autism plans? Or what about party leaders unveiling such autism plans early in a national election campaign?

Well, kudos to Hillary Clinton…

https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/

[Andrew Kavchak]

Hi Folks!

Merry Christmas and Happy New Year!

Here is something very nice from The Hill Times (which is a very popular weekly political newspaper that is widely-read around Ottawa).
http://www.hilltimes.com/opinion-piece/legislation/2015/12/24/all-i-want-for-christmas-is-a-national-autism-strategy/44639

All I want for Christmas is a national autism strategy

We’ve waited almost a decade. Now is the time for the federal government to bring together the brightest minds in the country on the issue and enact a federal strategy to give our kids with autism the services they need to survive and thrive in communities across the country.

By KATHLEEN O’GRADY |
Published: Thursday, 12/24/2015 12:00 am EST
Last Updated: Thursday, 12/24/2015 8:44 am EST
Over a year ago, I was invited to celebrate World Autism Awareness Day on Parliament Hill. It was attended by a dozen or more Senators from both major parties, political staffers and invited guests mostly from an assortment of autism non-profit organizations. I expected a somewhat predictable ‘feel good’ event about how far we’ve come and how far we have still to go.

But an hour later there weren’t many dry eyes in the chamber.

It turns out, many of the politicians who decided to join the event that day had personal experiences with autism. One Senator spoke at length of his daughter who struggles to get adequate services for his grandchild with autism, and how challenging it has been–economically, physically and emotionally—for the whole family. He cried openly.

Another Senator spoke of a family she knows that is struggling with long wait times for essential services, such as speech or behavioural therapy. More than one participant spoke of the difficult choice families have made to uproot from jobs and life-long communities and move across the country to Alberta or British Columbia where autism services are often more readily available and flexible, particularly if a family happens to have more than one child on the autism spectrum.

Others spoke of the economic burden of pursuing private therapies—funded out of pocket, often in the tens of thousands of dollars per year—resulting in refinancing homes or selling them altogether just to get their child with autism the basic supports they need to learn and thrive.

What became clear that day is something I’ve heard autism champion Senator Jim Munson say before: autism doesn’t affect Liberals or Conservatives or NDPers. It’s an equal opportunity neurodevelopmental disorder that affects Canadians across the political spectrum and clear across the country.

What was also clear that day—and from a number of reports since—is that autism families in Canada are struggling, that diagnosed cases of autism are on the rise, and that most provinces are not able to keep up with necessary services.

According to a recent survey from the Canadian Autism Spectrum Disorders Alliance (CASDA), almost three quarters of parents of preschoolers in Canada with autism wanted, but did not receive, early intensive behavioural intervention for their child—one of few interventions for autism with solid peer reviewed evidence.

A similarly troubling report, released last month from the Ontario Auditor General, reveals that in some jurisdictions in the province, there are more children waiting for autism services than receiving them, with more than 16,000 children on wait lists that continue to balloon.

This has largely been my own experience in Ontario. Despite being a proud advocate of our universal health care system, which is intended to serve those in need and not just those with the ability to pay, I found it failed me when I needed it most. When my son did not meet traditional developmental milestones, I discovered I would have to wait years to get a diagnosis in the public health system. We paid for a private diagnosis instead, but then we still had to wait more than two years for publicly funded behavioural therapy, which was provided to us for only six months.

It was all too little, too late. Like so many other families affected by autism, instead of just waiting, we paid for our son’s essential health services privately—and he blossomed as a result. We are one of the lucky ones who could afford to do so, though not without struggle.

Dire headlines on gaps and lacks in autism services are recurrent in the media from multiple regions across the country; you can almost recycle the headlines and simply rotate the province named. It’s not an exaggeration to say we have an autism services crisis in Canada.

So what can be done? Plenty.

Evidence shows that proper health and educational supports for those affected by autism pay off. Early intervention is key and heads off more expensive and extensive supports that are needed later in life if early intervention is not provided. It makes economic sense, in other words, to provide autism services early.

Kids with autism are not lost causes—they are full of potential. We are failing them.

The last federal government made a good start establishing an Autism Spectrum Disorder Working Group to bring together those working on the issues across the country to discuss key concerns and share best practices. But much more federal support is required to make things better—now—for Canadian families affected by autism.

For starters, the new Liberal government could dust off the excellent cross-party Senate report—aptly titled Pay Now or Pay Later: Autism Families in Crisis from 2007 and get to work. It’s number one recommendation? A comprehensive national autism strategy.

We’ve waited almost a decade. Now is the time for the federal government to bring together the brightest minds in the country on the issue and enact a federal strategy to give our kids with autism the services they need to survive and thrive in communities across the country. It’s not only the right thing to do, it’s the smart thing to do.

Kathleen O’Grady is a research associate at the Simone de Beauvoir Institute, Concordia University, the managing editor of EvidenceNetwork.ca and a mother of two sons, one with autism.

__________________________

On a related note, as some of you may recall, back in 2004-05-06 after my own son was diagnosed, I frequently went to Parliament Hill and protested with a sign calling for healthcare coverage for autism treatment. During that time I met numerous politicians, including Senator Jim Munson, and we managed to raise the profile of autism issues.

Now, a decade later and with a new government on the Hill, I have decided to resume my lunch-time protests. I got the protest permit and resumed the activity just before the House rose for the holiday break. The politicians will return in late January…and so will I.

Cheers!
Andrew Kavchak

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