[FEAT BC Admin]

In this topic area, discussion is on all issues relating to setting up and running a home-based intervention program. Please feel free to bring up any problems or suggestions. Parents can help each other greatly by sharing information and giving suggestions.

In addition to parents helping parents, A.B.A. professionals on in the Discussion Group can also help provide insight and guidance.

Topic

[Nancy Walton]

To piggy back on Jean's comments, this just came across my desk:

Family's move from Ontario to Pennsylvania gave autistic child a complete program of behavioural therapy, arranged by the state. Take that, Canada

Malcolm Stanley
Published On Sun Oct 18 2009

President Barack Obama has introduced a concept into the U.S. health-care debate that "no one should go bankrupt because they got sick."

Most Canadians listen to this rhetoric and smile, secure in the knowledge that for them this issue was solved a long time ago. But for some Canadians this platitude is as relevant as it is to their American cousins. They are going broke in the land of universal health care because someone in their family is sick.

My family and I moved to the United States a year ago, following employment opportunities that promptly vanished like spring flowers in the blizzard of the financial system meltdown.

Left precariously clinging to tenuous health-care insurance, we received an involuntary crash course in the very insecurities of being American that fuel the current U.S. health-care debate. Yet financially, when we balance our chequebook every month, we feel we are more secure and less likely to fail than we were before we left Canada.

How can this be? Well, we have a daughter with autism, a disorder that now strikes at least one in 100 children, seemingly at random. It cannot be tested for or prevented. Autism can prevent children from learning how to communicate, to socialize, to control their own body movements and functions.

Behavioural therapy is the only proven and effective treatment. In Canada, this therapy is provided by a patchwork quilt of provincial programs, all of which are resource constrained.

Rationing of care is the result. In Ontario, where we used to live, children proceed unpredictably from wait list to therapy, sometimes never actually receiving any help at all. Once they reach school age, they are dumped into a system that actually prevents their trained therapists from helping them to learn by barring them from the school building.

In this situation, many Canadian parents empty pocketbooks, mortgage houses and exhaust the kindness of relatives in a scramble to personally provide the behavioural therapy that helps to unlock the minds of their children from their uncooperative bodies. A disproportionate number live below the poverty line. Some go bankrupt.

It is hardly a glowing example of the universal care Canadians so smugly proclaim to their American cousins.

But wait. Now we are the American cousins. What a difference this makes. Before school started, our daughter received a complete program of scientifically validated behavioural therapy, arranged by the state of Pennsylvania, with no mentions of wait lists, benchmarked cut-offs or payment. Now in kindergarten, she receives in-school services and support from therapists with the same training as those who are barred from schools in Ontario.

How can these outcomes be so different for the same child when the clinical diagnosis used as a basis for the provisioning of services is precisely the same? I believe the answer lies in the very basis of our two societies.

Canada is founded on principles of peace, order and good government.

In Ontario, this translates into a benchmarks program that will withdraw therapeutic services from children with autism who do not show a sufficiently timely response to therapy. It is apparently a bureaucratic issue of the proper management of government spending.

If presented with a young Helen Keller, one wonders whether Ontario government-provided therapy services would be withdrawn. Would Keller ever have achieved her eureka moment if, instead of persistently holding Keller's hand under the pump, her therapist had been told to move on to another child with a more visible return on therapeutic investment?

The recent media coming-out party of Carly Fleischmann, who showed mixed indications of therapeutic progress for almost 10 years before flowering into a fearsomely articulate advocate for autistic children, is a local and compelling embodiment of the argument that this management-efficiency approach to providing autism services is misguided.

Counterintuitively, things are different in the United States. A nation founded upon the principles of life, liberty and the pursuit of happiness brings a persistent faith in the individual to the question of how to provide for autistic children. A simple trip of a moving truck has transformed the status of our daughter from that of an inconvenient provincial liability to that of a valued citizen with the right to demand assistance in her essential pursuit of happiness.

In Pennsylvania, her very existence demands that supports be provided, with the full force of the law and court system standing behind her.

These differences in the approach to the treatment of autistic children between our two nations call out the fact that the Canadian system is not the perfectly formed jewel it is often made out to be in comparison with the American system.

Families with children with autism should not go bankrupt. But in Ontario and other Canadian provinces, many do.

By allowing such bankruptcies to occur, policy at both the federal and provincial level reveals a hole in the safety net large enough for entire families to fall through.

It is a hole that America apparently started to patch up some time ago. Canadians have some work to do on their own safety net where it concerns helping and supporting children with autism and their families. There is no time like the present for that work to get started.

Malcolm Stanley advises telecommunications companies on product and service strategies. He currently lives with his family near Philadelphia.

[Mike & Jean]

I have been asked to comment on and offer my opinion regarding the provincial government’s recent decision to discontinue the “direct payment” option in favour of “invoice payments”. I have delayed responding for three reasons: 1.) I’ve been waiting to see what others have to say, particularly parents of newly diagnosed children, which so far is not much, and, 2.) I was waiting to see if someone else would deliver the inconvenient truth, and, 3.) I wanted to digest the enormous emotional impact of the most recent tragic incidents in each of Edmonton and Toronto.

My opinions are based largely but not solely on experience gained over the last 12 years – advocating for ABA to be included, provided and paid for by our health care system. That is why FEAT of BC existed and why The Medicare for Autism Now Society was created.

By way of background, I am one of the founding directors of FEAT of BC and more recently The Medicare for Autism Now Society. I was also one of the Auton and Hewko litigants and was on the legal steering committees for both cases. In FEAT’s early years, along with Sabrina Freeman, FEAT’s founding executive director, I helped countless families set-up home-based ABA programs. Together, we organized ABA conferences, workshops, seminars, and facilitated parent discussion groups. FEAT of BC created the treatment movement in BC which eventually provided the impetus for the rest of Canada. Recently, as a director of Medicare for Autism Now, I’ve travelled across Canada on three occasions working specifically on initiatives to have legislation passed which would enshrine all our childrens’ treatment under Medicare. I know I have used the word “I” a lot, but, clearly, I have had the “benefit” of an extensive array of experience in the autism advocacy business. I’ve met with bureaucrats at every level, provincial and federal politicians from every political party….I’ve heard all their spin. I’ve learned valuable and sometimes extremely painful lessons. They form the basis for my opinion.

The province’s decision to discontinue the direct funding option is completely unacceptable. It is definitely not in the best interests of our children and their families. If passed, it will be a retrograde step, taking us back to the situation that existed in BC before the Auton decision. I believe it is the first step in dismantling autism treatment funding. Why? ….Because they can. There is NO law which protects this funding. In fact, this funding ONLY exists because of the Auton decision. And it continues to exist solely at the discretion of the faceless, nameless bureaucrats. The fact of the matter is: autism funding can be taken away tomorrow with the stroke of a pen. The government’s preferred “invoice payment option” effectively takes parents and, therefore, children out of the equation. With you out of the loop, others will decide what is best for your child and, eventually, might decide whether your child is making enough “progress” to keep funding treatment..(see what’s happening in Ontario)

Lesson #1 – Never, ever abdicate your parental choice and control to a bureaucrat. Your child’s best interest is never their first priority.

Pre-Auton, there was NO treatment funding at all. Any funding came packaged as: respite, daycare, or babysitting, all of which were wait-listed and means-tested. Some parents did receive substantial amounts of money, if they kept quiet about it, and collaborated with bureaucrats. So – if you “made nice”, didn’t rock the boat, and didn’t talk about treatment – you got money.

Lesson#2 – Never collaborate with bureaucrats. “Collaborate” is bureaucrat-speak for “Do what I say”. It might work for a while for those engaged in it, but it doesn’t last. Eventually, the collaborators are cut off. In the last 12 years of being in this fight up close and personal, the only two things that have made measurable, sustained gains for all have been litigation and focused political action…not making nice. In fact, in my experience making nice actually makes the situation worse.

FEAT of BC was created in 1996 for the single purpose of making science-based autism treatment (ABA) universally available and funded by government. Auton created some treatment funding, but as we see by the provincial government’s recent decision, it’s not protected. Today, lack of complete treatment funding remains the biggest obstacle to meeting the needs of people with autism in Canada. The solution lies in law that ensures our childrens’right to health care. That is why we need Medicare for Autism Now!

The Hewko decision created a precedent for all school districts to do the right thing. Sadly, most are not, but the ones that are demonstrating good faith are only doing so because they don’t want to be the next Hewko. I encourage more parents to read and understand how to use the gains made in the Hewko decision when dealing with difficult school districts.

Lesson #3 -Law can only be useful when enforced.

How should parents respond to the provincial government’s decision?
If our child was much younger and his $20k of treatment funding was in jeopardy; this is what I’d do:
I would begin by organizing a MASSIVE rally at the Premier’s constituency office. I would make sure there were hundreds of parents, family members, friends, colleagues and supporters there…all carrying placards which would say a variety of things, such as: How many more Canadian children need to die before the government acts? In Canada – health care is a right! I would have as many media attend as possible. I would have lots of parents “tell their story”. I would arrange media interviews focusing on the recent deaths in Edmonton, Toronto and Montreal – each a result of government failure to take the morally right and economically sensible action. I would park myself at my MLAs office until they helped. I’d contact my local community newspapers and invite them to join me at the MLAs office for an interview…. and I’d keep doing it for as long as necessary….but that’s just me….

Now is the time to act. Parents must decide if you are going to continue being a supplicant – risking your child’s future to the whims of government bureaucracy, or will you stand-up and, as a citizen and tax payer, demand better?

In Canada, fully-funded, science-based treatment for autism is a reasonable expectation – our children deserve no less. It is their right and should be our solemn obligation.

Lesson#4 – “Those who will not learn history are destined to repeat it.” – Edmund Burke

Time to wake-up, get organized and and get it done!

Jean Lewis,
Medicare for Autism Now!
mfanow@gmail.com

[Super Dad]

REMINDER!

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:

Joint Attention and Social Stories
by
Hoa Chan, M.A., BCBA
Clinical Director of Tiny Talkers
at
7:00pm, Tues Oct 20
in the Cedar Room of the
West Vancouver Community Centre

We are very pleased to have Hoa Chan as the guest speaker at our upcoming session. She will talk about two topics that are very useful to parents of newly diagnosed children: joint attention and social stories. Hoa is uniquely qualified to discuss the latter, since she has previously conducted an experiment on social stories for her masters thesis.

DATE: Tuesday, Oct 20, 2009
TIME: 7 – 9 pm
LOCATION: Cedar Room, West Van Community Centre (2121 Marine Drive, near 21st Street)

Coffee/Tea and snacks provided. Donations are greatly appreciated.

Please RSVP to Carol at colemanmoser@hotmail.com

Carol and Tony
(Co-facilitators for ASBC North Shore Group)

[Dione Costanzo]

*** REMINDER ***

The ABA Support Network Presentation and Toy Sale!!

“Mand Training – the Art of Teaching to Request”

Special Guest – Liana Maione, Behavioral Consultant

This presentation will introduce the topic of “manding” and the importance manding plays in the area of communication for children with autism. Video clip examples will be used in the presentation.

Topics will include:
• What is manding?
• Why is it important for children with autism to mand appropriately?
• How do we teach manding? (a brief and basic introduction)
• How do we, as educators and parents, create opportunities for manding?

Date: Tuesday, October 20, 2009
Time: 7-9pm
Location: Surrey Sport and Leisure Complex, 16555 Fraser Hwy
Use Arena entrance and go up stairs to MP Room #3
RSVP: dionec@abasupportnetwork.com

Following this special presentation we will be having a
TOY SALE!!

Toys, games and therapy materials available for sale!

Special thanks to all our members that have donated ABA materials so that new (and not so new) families have an opportunity to stock their therapy rooms at reasonable prices.

All proceeds go to the ABA Support Network.

MEMBERSHIP at http://www.abasupportnetwork.com

Giving the ABA Community a Voice
We are a membership based, non-profit society. Our mission is to improve access to Applied Behavioral Analysis support and treatment in the home and community for children, youth and adults who need it.

[Super Dad]

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:

Joint Attention and Social Stories
by
Hoa Chan, M.A., BCBA
Clinical Director of Tiny Talkers
at
7:00pm, Tues Oct 20
in the Cedar Room of the
West Vancouver Community Centre

We are very pleased to have Hoa Chan as the guest speaker at our upcoming session. She will talk about two topics that are very useful to parents of newly diagnosed children: joint attention and social stories. Hoa is uniquely qualified to discuss the latter, since she has previously conducted an experiment on social stories for her masters thesis.

DATE: Tuesday, Oct 20, 2009
TIME: 7 – 9 pm
LOCATION: Cedar Room, West Van Community Centre (2121 Marine Drive, near 21st Street)

Coffee/Tea and snacks provided. Donations are greatly appreciated.

Please RSVP to Carol at colemanmoser@hotmail.com

Carol and Tony
(Co-facilitators for ASBC North Shore Group)

[Jennifer Nerpio]

Sorry, I hope that my earlier post did not come out wrong. My son was just diagnosed 10 days ago, so the whole process is all new to me and I am trying everything I can to educate myself on treatment for my son. As you all know how confusing it can be the 1st while. Someone suggested Feat to me as a great resource and I did not know the back ground behind it. I am just one parent trying to get help from another, so If I offended anybody about asking about other therapies I apologize.
Please I would love to hear from you on ABA treatment and how it works.
Thank you
Jennier Nerpio

[Jennifer Nerpio]

My soon to be 5 year old has just been diagnosed with Aspergers.
The whole process in the begining for therapy and what one is to choose is overwhelming. My son is very high functioning, his main problems are socialization with peers and due to his sensory processing disorder overstimulation and self regulation. I would love to hear from parents who liked ABA as well as those who did not, or any other treatments one would recommend. Everyone seems to push ABA so I would love to hear if it did not work for some people.

buya@shaw.ca

please email me at buya@shaw.ca

[Dione Costanzo]

The ABA Support Network
Presents

“Mand Training – the Art of Teaching to Request”

Special Guest – Liana Maione, Behavioral Consultant

This presentation will introduce the topic of “manding” and the importance manding plays in the area of communication for children with autism. Video clip examples will be used in the presentation.

Topics will include:
• What is manding?
• Why is it important for children with autism to mand appropriately?
• How do we teach manding? (a brief and basic introduction)
• How do we, as educators and parents, create opportunities for manding?

Date: Tuesday, October 20, 2009
Time: 7-9pm
Location: Surrey Sport and Leisure Complex, 16555 Fraser Hwy
Use Arena entrance and go up stairs to MP Room #3
RSVP: dionec@abasupportnetwork.com

Following this special presentation we will be having a
TOY SALE!!

Toys, games and therapy materials available for sale!

Special thanks to all our members that have donated ABA materials so that new (and not so new) families have an opportunity to stock their therapy rooms at reasonable prices.

All proceeds go to the ABA Support Network.

Giving the ABA Community a Voice
We are a membership based, non-profit society. Our mission is to improve access to Applied Behavioral Analysis support and treatment in the home and community for children, youth and adults who need it.

Join now!! http://www.abasupportnetwork.com

[Nancy Walton]

The ABA Support Network website is now ready for membership registration! And membership is FREE.

Everyone please check out our website at http://www.abasupportnetwork.com. Click on "membership" at the top of the page and then click the "click here to Join" button. On the membership page, there is also a new parent package to read or download.

We are strictly a parent run and entirely volunteer organization. With the cuts to the EIBI program, we are going to be very busy helping new parents start up quality ABA programs. We are also there give the existing ABA community a voice.

We will be holding monthly meetings at the Surrey Sport and Leisure center, but through our website and membership surveys we will tackle issues province wide.

We would greatly appreciate donations to help offset our start up costs. Donations can be made online.

Thanks to everyone for your support.

[Todd Dea]

MAJOR AUTISM PROGRAM CHANGES TO BE ANNOUNCED !!

Anyone seen this yet ?? The announcement is supposed to be at 11:30 this morning !!

http://www.publiceyeonline.com/archives/004273.html

[Author]

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