Canada Needa a Real National Autism Strategy: Exhibit #1 Saskatchewan

Saskatchewan is Exhibit #1 In the Case for a REAL National Autism Strategy

Canada has long needed a REAL National Autism Strategy, one which includes coverage of autism in medicare to ensure that children with autism disorders received treatment for their autism disorders regardelss of which province their  parents live in. One of the most glaring examples of the need for national autism medical coverage is in the province I once called Canada's Autism Wasteland  province.   Since that commentary on September 2, 2007  little progress appears to have been made judging by the Global story by Amber Rockliffe: Saskatchewan families moving due to lack of autism funding.  Rockliffe reports of  Saskachewan families leaving the province to find treatment for their children's autism disorders; treatment which is not available because of long wait lists and is not usually delivered  in sufficient hours to make a substantial difference in treating their children's autism. 

One of those families that has already made the move is the family of Sheri Radoux:

“Sheri Radoux, has moved south of the U.S. border to Minnesota. “I think the services in Saskatchewan are probably the worst, or one of the worst in Canada, “said Radoux. “We moved down to Minnesota and we got full-time therapy for all our children, paid and funded by the state.”

The Rockliffe report goes on to indicate that Saskatchewan spends half, approximately $7.5 million annually, compared to approximately $15 million, that   Manitoba, with a similar population, spends annually on autism services.

Families leaving provinces, including the province many would consider the birthplace of medicare in Canada, to seek a better life for their autistic children in jurisdictions provincial and American  where a greater value is placed on the lives and futures of autistic children.

Yes, Canada needs a REAL National Autism Strategy.

Shannon Hill Speaks Up About About ABA Autism Intervention Benefits and Autism "Services" in Saskatchewan

Shannon Hill of Saskatchewan, parent of a child on the autism spectrum, 

Board Certified Assistant Behaviour Analyst, (Florida Institute of Technology ABA program), autism advocate and BA (Psychology)

Following is a letter written by Shannon Hill to Linda Restau director of continuing care and rehabilitation for the Ministry of Health, Province of Saskatchewan, including comments on ABA and its benefits for autistic children.

"Dear Ms. Restau,

I would like to take this opportunity to comment on the article presented by Ashley Wills of 650 CKOM April 22, 2014.

In the article you state with regard to Saskatchewan's funding for ASD services "That doesn't include some of the other services that individuals with autism may access through regional health authorities or other ministry services."

I would respectfully ask what services you are referring to - specifically. I have been a parent of a child with an Autism Spectrum Disorder for twelve years, have worked as an ASD Consultant in the Saskatoon Health Region, and have absolutely no idea what you are referring to. Are you talking about Cognitive Disability Strategy - which almost no families qualify for? Other than that, I can think of no service outside of the Health regions that would serve the Early Intervention needs of our children. Even in the case of older children who have specific,challenging behaviours such as self injury, property destruction or aggression, there is no place for parents to turn to address these behaviours. (And don't get me started on the kids under the care of Social Services or kids who are dumped in schools).

I would also urge you to take another look at the Lovaas study from 1987 that you keep referring to. It is clear that you have misread the study as everyone else who reads it, seems to understand that 47% of children in the treatment group who received 40 hours per week recovered from their symptoms of autism, which isn't to say that nothing went on with the rest of the children who underwent treatment.

Original research in peer-reviewed journals indicating that 90% of children substantially improved when utilizing the Lovaas Model of Applied Behavior Analysis, compared to the control group. Close to half attained a normal IQ and tested within the normal range on adaptive and social skills. -Lovaas Institute website. Not all children will achieve recovery, but all children will benefit from intensive therapy, their quality of life improves through developing skills that make them more independent,therefore less of a "burden" on the health care system as they age. This has been proven time and time again with research.

The cost for intervening when these children are small is great, but it is nothing compared to the cost of warehousing adults with autism who have no skills, poor social behaviour and in some cases no functional communication because they did not receive treatment early on.

I have offered my knowledge and experience numerous times to the government, and I daresay I could put you in contact with folks across this country who have much more knowledge and experience than I.

I am asking the government of Saskatchewan to please take me up on this, please, please put someone in charge who has an idea of what treatment looks like, instead of fumbling about in the dark with excuses.

Sincerely,

Shannon Hill, BCaBA"

Once Canada's Autism Wasteland Has Saskatchewan Made Any Meaningful Progress?

Apparently Saskatchewan is still having difficulty providing necessary levels of early autism intervention.  I once described it in a September 2, 2007 commentary as Canada's Autism Wasteland:  Canada's Autism Wasteland To Take First Step Forward.   At the time of my commentary Saskatchewan was one of the few provinces with no intervention program for autistic children.  

A recent Global News article by Amber Rockliffe, Saskatchewan Families Moving Due to Lack of Autism Funding indicates that not enough hours of intervention are being delivered to Saskatchewan's autistic children and some families are moving out of province to find the help their children need:

"Sheri Radoux, has moved south of the U.S. border to Minnesota. “I think the services in Saskatchewan are probably the worst in Canada or one of the worst in Canada,” said Radoux. “We moved down to Minnesota and we got full-time therapy for all of our children, paid and funded by the state.” Saskatchewan spends about $7.5 million annually on autism treatment and services. ...   ..... “When we were looking, you could get one hour a week of therapy. And that’s like saving a sinking boat with a thimble,” explained Radoux."

With respect to the number of intervention hours received by Saskatchewan's autistic children The Global News article references Shannon Hill, mother of an autistic child:

“Hill, who now works with autistic children herself, says many of them receive only several hours of behavioural therapy a week. It’s basically a waste of money on the government’s part because it doesn’t produce any outcomes.”

Article author Rockliffe obtained information that the province's Ministery of Health had increased autism funding 1400 per cent.  The funding has apparently not resulted in delivery of autism intervention to autistic children at anywhere near required levels. 

Saskatchewan, Canada's Autism Wasteland, Is Exhibit 1 in the Case for a National Autism Strategy

More than three years after I described Saskatchewan as Canada's Autism Wasteland the label still accurately describes the state of autism services in the prairie province according to a FEAT opinion article in the Star-Phoenix. 

The Families for Effective Autism Treatment article argues that some money has been spent but it has been spent ineffectively and cautions anyone with an autistic child not to move to the "Land of the Living Skies" as Saskatchewan markets itself:

It sounds impressive when you hear about all the money being put into autism and programs the government is running, but ask families across Saskatchewan about how well this money is being spent. Ask our government for current and regular report cards. Ask what successes it has accomplished with these new programs and positions. Ask it to provide statistics on how many individuals receive adequate and professionally trained support.

Ultimately, individuals with autism continue to lose.

....
 

Our children do not have time to waste while valuable dollars are spent creating expensive, ineffective services that aren't based on evidence and research. Our children need the help of proven therapies before they become another sad statistic lost in Autism's Wasteland.

Let your voice be heard for those who cannot. Saskatchewan can't afford to keep spending millions of dollars for ineffective programs that do not help individuals with autism. Let's use the money wisely and try not to re-create the wheel.

SASKFEAT is demanding immediate individualized funding, which is not income tested, until an acceptable and proven autism strategy is in place in Saskatchewan -- a strategy that addresses the lifetime needs of all individuals with ASD, and that is delivered across this province. Our families have been waiting and suffering long enough.

3 years after Saskatchewan started to fund autism services they still do not have an effective autism strategy in place. It is the autistic children of Saskatchewan who lost their 3 years of development potential, particularly during their early years between 2 and 5, who will have lost the most and who will pay the price for government and bureaucratic nonchalance or incompetence. 

Saskatchewan, Canada's Autism Wasteland, is also Exhibit 1 in the case for a National Autism Strategy.

A Moving Autism Song and Video

This autism song and video speak volumes. I hope the government of Saskatchewan, and other governments in Canada, the US and the world, will listen.

Autism in Saskatchewan ~ Fall of 09 ~ a Production by A.C. @ Yahoo! Video

autism

Saskatchewan Still Canada's Autism Wasteland

More than two years since I described Saskatchewan as Canada's Autism Wasteland the government of Saskatchewan is still dithering, and delaying instead of putting a quality system of autism services in place to help that province's autistic children.

In all fairness to Saskatchewan's political and public service elite they may not know much about autism disorders, or the importance of timely early intervention in helping autistic children live fuller, richer lives. Their failure to provide an autism intervention system with quality and integrity for autistic children across Saskatchwan appears to indicate a lack of any real understanding about autism disorders or the importance of early intervention in helping autistic children make real gains that will help them live fuller lives.

The Leader-Post reports that parents of autistic children rallied at the Saskatchewan legislature Thursday to protest lack of funding and provision of properly trained autism support workers. Tim Verklan, president of SaskFeat, Saskatchewan Families for Effective Autism Treatment, commented on the lack of properly trained help:

"We get warm bodies — with good intentions, but warm bodies — working with our children and they just fall farther behind.”

Apparently the Saskatchewan government has a plan in place but does not understand the urgency, the time sensitive element of providing intervention to autistic children:

"NDP health critic Judy Junor said parents aren’t getting access to adequate treatment.

“It’s very time sensitive. These children can really progress so quickly with intensive therapy that meets their particular needs,” Junor said outside the assembly.

Parent Arden Fiala, whose daughter has Asperger syndrome, said she wants government to know there’s an urgency to the call for a strategy and for “individualized” funding in the interim that is not income-tested.

“The start of the action plan of the (Premier Brad) Wall government is just that — a start. It is not addressing the immediate and critical needs on the front lines and we’ve yet to see the benefits,” Fiala said."

Timid, incremental, baby steps will preclude many autistic children in Saskatchewan from obtaining the help they need.

autism

Autistic Teen Missing In Saskatchewan

From the Saskatoon StarPhoenix:

Police are asking for the public's help after a teen with autism went missing Sunday.

Albert Edward Smallchild, 17, was last seen at home on the 2900 block of 20th Street West at around 3:30 p.m. Sunday. The aboriginal teen, who is six feet tall and weighs 190 pounds, was wearing grey shorts and a grey short-sleeved shirt.

Police say Smallchild understands directions, but does not know his address or how to get home.

autism

Autistic Children Lost On Waiting Lists In Canada's Autism Wasteland

In Waiting list for help is long the Leader-Post this weekend reports on the autistic children getting lost on the waiting lists in Saskatchewan, Canada's Autism Wasteland. The Leader-Post reports that Saskatchewan is the only province in Canada without a comprehensive treatment program for autistic children. At the Autism Resource Centre in Regina one child has been on a waiting list for services for 2 1/2 years and is still number 66 from the top. Once at the top of the list, a child will receive a program plan and some support services but no treatment program. The extremely valuable early years development time is being lost due to government indifference.

The school years are no different in Canada's Autism Wasteland where the Saskatchewan government nonchalantly relies on the approach that schools are expected to provide all students' needs from special education funding - without the funding and trained personnel to provide autism specific educational assistance to autistic children. The result - autistic students - even non verbal autistic students - are dumped in the mainstream classrooms without proper help.

What is it in the air or the water in Saskatchewan that has caused its political and civil service leadership to be so indifferent to the needs of autistic children? How can they just ignore the needs of vulnerable children?

It is not simply a money issue. New Brunswick is on a similar economic and population footing as Saskatchewan but much more has been done here for our autistic children and much more continues to be done.

It is not like the Saskatchewan leadership can rely on ignorance as an excuse. With internet communications today it is impossible for any conscious, and conscientious, leader to pretend that they do not know that 1 in 150 children in their jurisdiction will be diagnosed with this neurological disorder.

It appears that, apart from calloused indifference, the explanation for Saskatchewan's inaction may lie in proximity to Canada's wealthiest province - Alberta. The much healthier funding for autism services in Alberta has resulted in some Saskatchewan families moving next door to obtain treatment for their autistic children.

Why is Saskatchewan Canada's Autism Wasteland? Is it possible that the Saskatchewan leadership is simply leaving it to their Alberta neighbors to deal with? It certainly looks that way.

No Autism Talk in Saskatchewan Election

Saskatchewan's Leader Post is covering autism this weekend, including profiling some autistic children and their families and notes that in Canada's Autism Wasteland the politicians are remaining silent on autism during the Saskatchewan election with none of the parties featuring an autism plank in their party platforms.

The lack of discussion of autism issues is featured in Autistic children get lost in election shuffle an article which also features SASKFEAT's Lisa Simmermon, herself the mother of an autistic child and a long time autism advocate. The provincial politicians in Saskatchewan are using their own delay and neglect of autistic children as an excuse for not being in a position to provide autism services, using the standard, "we have to consult the stakeholders", lines to explain why they are not in a position to start implementing autism specific programs.

We went through that song and dance years ago in New Brunswick when the Interdepartmental Committee on autism services took 18 months to report that there were few autism specific services in New Brunswick. That report then went unread by the lead minister on the Committee, then Health Minister Elvy Robichaud for almost a year.

In another flashback moment, a Kim Campbell moment, the Leader-Post reports that Lisa Simmermon was told by one provincial politician that "an election is not a time to comment on government services." Yeah, right.

Canada's Autism Wasteland To Take First Step Forward

It is hard to believe that Canada has a province with NO autism program in place at all but that appears to be the case in Saskatchewan where the "Faces of Autism" conference is being presented by Newfoundland native Carolyn Forsey on October 26-27, in Meadow Lake Saskatchewan, some 10 years after similar advocacy and awareness efforts began in Newfoundland. The conference is hosted by Saskatchewan Health, Meadow Lake Tribal Council, Prairie North Regional Health Authority and Northwest School Division #203 and will feature author, teacher, trainer, keynote presenter and consultant Barbara T. Doyle MS and Ronald Leaf, Ph.D licensed psychologist and co-author of A Work in Progress, a book on behavioral treatment.

Forsey said Saskatchewan is far behind the rest of the country when it comes to autism support.

“In Newfoundland in the beginning they were diagnosed with autism and told to go home and forget about it, and Saskatchewan parents, that’s what they are living with,” she said. “In Newfoundland we began this process and it’s sad that ten years later Saskatchewan is going through the same thing.”

She added that today, Newfoundland has child management specialists and behaviour specialists to work with autistic children, and the government continuously puts money towards autism intervention. Currently, Saskatchewan Families for Effective Autism Treatment (SASKFEAT) is working towards getting the much needed support for families in the province.

“Saskatchewan is the only province that does not have a provincial program set in place for ASD,” explained Ferguson. “There’s nothing in the province of Saskatchewan for the parents.” Winkler said this conference is a step in the right direction, but it is just the beginning. “I think it needs a focus, and I think this conference will help do this,” he said.

“The government needs to be pushed and there needs to be a focus and recognition of difficulties faced by the parents of people suffering.”

Forsey said she hopes that at the very least, this conference will give the parents and those affected by autism a little hope. “We need to tell the parents, you know what, we’re going to start to try to do something really good for these kids,” she said. “Parents are going to leave there with a sense of hope. That’s the whole premise of this conversation. They’re not alone."

As someone who has been actively involved with autism advocacy in New Brunswick for the last 8 years I can empathize with the predicament of Saskatchewan families who have such a big hill to climb. Fortunately they should be able to catch up more quickly through emulation of, or at least by learning from, existing programs in other Canadian provinces and US states.

Of course it would be easier if there were an injection of funds to assist the people of Saskatchewan construct programs even remotely similar to those of oil rich, next door neighbor, Alberta. With the federal government of Stephen Harper, oblivious to the needs of autistic Canadians, that could be difficult. The mythological Big Foot has a better chance of getting assistance from Mr Harper's Conservatives.

Four Strong Autism Winds

Four strong winds that blow slowly
Seven seas that run high
All these things that don't change come what may
Now our good times are all gone
And I'm bound for moving on
I'll look for you if I'm ever back this way

Guess I'll go out to Alberta
Weather's good there in the Fall
Got some friends that I can go to workin' for
Still I wish you'd change your mind
If I asked you one more time
But we've been thru that a hundred times or more


- Ian Tyson

Ian Tyson's Four Strong Winds is viewed by many as Canada's unofficial national anthem, a tale of Canadian migration to Alberta in search of work. Today Alberta continues to draw Canadians in search of work. But it is also a magnet attracting Canadian families with autistic children in search of its government funded autism treatment. In neighboring Saskatchewan meanwhile government funding for autism is virtually non-existent.

In Parliament the Scott-Stoffer private member's motion calling for a National Autism strategy to deal with this national health crisis was passed while the Shawn Murphy bill seeking inclusion of autism treatment under medicare was defeated by the Harper Conservatives and the Bloc Quebecois on spurious jurisdictional arguments. Canada would not have a national medicare system at all if this feeble rationalization was employed consistently. Indeed why do we even have a federal Health Minister, at present Tony Clement, if the federal government has no role to play in health issues? The reality is that prior to the election of the Harper Conservatives Canadians had long recognized the need for federal provincial cooperation to address health issues of national magnitude that might be beyond the ability of smaller or poorer provinces to address.

To most Canadians the hundreds of studies documenting the effectiveness of ABA in treating autism should be enough to justify extending a federal hand to ensure that Canadians do not have to move to Alberta to seek treatment for their autistic children. To most Canadians the fact that 47-50% of autistic children can be rendered indistinguishable from their peers by school age, with intensive behavioral intervention, would be enough to justify federal involvement. For most Canadians the improvement in quality of life, the increased ability to communicate, to function in society, to avoid self injurious behavior would be compelling motivations justifying an effective national autism strategy. Since Stephen Harper is Prime Minister though a different argument, one which does not rely upon empathy or compassion, must be found - studies show that autism treatment saves governments very substantial sums of money, in reduced government services, over the life of an autistic person.

How about it Mr. Harper, how about offering a real national autism strategy to address Canada's autism crisis? You have clearly said no. Still I wish you'd change your mind, if I asked you one more time.


Autism funding drawing parents to Alberta

Last Updated: Monday, January 16, 2006 | 9:37 AM MT

CBC News

Alberta's coverage of an intensive therapy for children with autism is prompting some families to move to the province to receive additional care for their children.

"I used to see easily a kid a month that came to Alberta for autism services," Calgary pediatrician Dr. Neil Cooper said. "Probably it's been 10 years that we've been in this office that we've seen kids come from other provinces, mostly because of the funding."

The therapy – known as intensive behavioural intervention – is time consuming and expensive, but parents like Kim and Mike Stafford say it's worth it.

The Moose Jaw couple moved to Calgary 18 months ago because Alberta's health care system pays for the therapy, which they say has led to a big difference in their son.

When six-year-old Trey was diagnosed with autism, a developmental disorder which can be accompanied by severe problems with social interactions and language, three years ago, it seemed he had retreated into his own world, his parents say.

However, since he's been involved in intensive behavioural intervention, his progress has been remarkable, they say.

For example, although now Trey spends part of each morning spelling words, he could barely even say them a year ago, Kim Stafford said.

"Now he knows all the kids' names in his class. He can write down the names, he can spell them. It's really wonderful to see," she added.

The treatment involves speech therapy, physiotherapy, music and games – between 20 to 30 hours per week. It costs around $60,000 per year.

The Saskatchewan Health Department would only pay for one hour a week, which the Staffords say was inadequate, so they moved to Alberta. Almost immediately, Trey began receiving the full 30 hours, the Staffords said.

Roger Carriere, executive director of the Saskatchewan Health Department's community care branch, said the therapy is expensive and there are questions about its effectiveness. He also noted there are many other priorities competing for Saskatchewan's health dollars.