[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

[Elaine Raynault]

Hi Everyone,
I am advising a family with a newly diagnosed son. I am making some reccomendations about consultants, but I can't seem to find a list of consultants and their contact info. I checked on ACTBC, but it seems it has changed and no longer has an inclusive list. Can anyone advise me on how to find a list of Consultants in BC?
Thanks,
Elaine
i_am_elaine@shaw.ca

[Super Dad]

Here are a few nice articles that do not talk about autism, but do a good job of explaining the difference between science and snake oil:

http://www.pbs.org/wgbh/pages/frontline/shows/altmed/snake/

Tony

[Super Dad]

Here is an article called "The Great Autism Rip-Off – How a Huge Industry Feeds On Parents Desperate To Cure Their Children":

http://www.dailymail.co.uk/health/article-1023351/The-great-autism-rip—How-huge-industry-feeds-parents-desperate-cure-children.html

Tony

[Isaac]

Hello Everyone,

I’d like to thank Andrew, on behalf of our discussion group, for regularly keeping us apprised on the debacle that is government’s endless dithering on the autism treatment issue, and its ongoing refusal to even consider putting children afflicted with autism into Canada’s health insurance plan (Medicare).

A Study in contrast between Canada and the U.S. polity is reprinted below, but first I’d like to offer some thoughts on the highly disturbing policy divide between Canada and the U.S.

Florida’s governor just signed into law (May 2008) a mandate that health insurance providers in that state must cover autism treatment

Contrast this U.S. reality with Canada. My B.C. Medicare card doesn’t work for autism treatment. The nation’s vaunted, nationalized health care system excludes children afflicted with autism, yet Medicare is supposedly a defining feature of Canadian nationhood! How is it possible that a whole class of Canadians remain excluded from a key national health care program that defines the nation? How is it possible that parents still struggle to provide autism treatment on their line of credit, and are derided by government (or simply ignored) for suggesting that their children actually deserve to be included in the national health insurance plan too!

Perhaps the next time you happen to speak with your MP or provincial member of legislature, you can ask him or her why it is that Florida’s legislature and Governor seem to FULLY understand the gravity of the autism health insurance crisis and have moved to action to resolve it. Canada’s owners of the health insurance plan (i.e., government) continue to dither and turn a blind eye to the tragedy that is the life of many thousands of uninsured Canadians — parents of children afflicted with autism.

The obvious conclusion, for any honest observer, is that where there is NO conflict of interest in health insurance, members of the legislature actually DO work in the best interest of their constituents (e.g., Florida‘s new law to protect health insurance rights of kids with autism). In sharp contrast, where there IS a conflict of interest (as in Canada … government owns health insurance) the legislature turns its back on the health insurance rights of children afflicted with autism.

Systemic health care conflict of interest in Canada, and its resultant failure in proper political representation for a big-time health care issue, is quite the study in contrast, I would think.

Isaac

****************************************************************************
Reprinted from BusinessInsurance.com

Florida mandates autism coverage

By Colleen McCarthy
May 21, 2008

TALLAHASSEE, Fla.—Florida Gov. Charlie Crist signed legislation Tuesday that will require insurance companies to pay for diagnosis and treatment costs for autistic children up to $36,000 annually with a lifetime cap of $200,000.

Under the Window of Opportunity Act, SB 2654, major insurance companies that operate in the state of Florida, and companies with more than 50 employees, will be required to offer coverage for autism-related disorders.

The legislation gives insurance companies until January 2009 to negotiate a compact with the state to develop autism-coverage plans, before the mandate takes effect in 2010.

The legislation also calls on insurance companies to enhance consumer awareness of the benefits.

****************************************************************************

[Theresa Jouan]

ABA Teaching Homes:

If you are a parent of an older child/young adult with autism who has been the recipient of ABA intervention and still presents with significantly challenging behavior, you may be interested in an ABA teaching home model. We are pleased to provide an information session on the Teaching home. In general the presentation will cover the following:
1. Description of the ABA Teaching home
– An ABA teaching home is a residential program based on the scientific principles and methods of ABA and staffed at a level that can and has truly implemented quality treatment.
2. How it got started
3. The model: Behavioral Services of Tennessee
4. What services it provides:
– Teaching homes have been in existence for 15+ years and have demonstrated both their effectiveness and client/family satisfaction.
5. What type of population we serve
– Teaching homes can be temporary placements to reduce problematic behavior or long-term placements for individuals who require a high level of ongoing care.
6. Why ABA Teaching homes are different from current residential options
– Discuss management hierarchy and level of supervision provided
– Treatment package based on principles of behaviorism and applied behavior analysis
– Staff training and evaluation
– Policies and procedures
7. Success of the home thus far and future opportunities
– Documented client success
– Documented family approval and satisfaction
– Client now integrated in community

Come to an informational evening on ABA teaching homes presented by FEAT BC and the Autism Society of BC. Presenters: Nate Searle, MS, Theresa Tournemille, (MS Candidate), and Dr. Glen Davies.

[A Father]

Here is a great video about a family and their fight for help.

http://www.youtube.com/watch?v=GVFroRcnmwE

It was filmed in the US in 1976. It is quite amazing to see not much has changed. This video could have been describing any one of us today.

[Mike & Jean]

Just a reminder – Watch CTV's W5 tonight at 7:00 p.m. Titled,"Life on the Brink", is a story of how Canadian families, which includes all of us, are dealing with the extraordinary costs of providing treatment for our children with autism. Our national political initiative to have autism treatment covered under Medicare is part of the story. It is the second story in the program, so will begin about 7:30 p.m.

We encourage you to watch the program and to email your comments to W5 at its conclusion. Go to http://www.ctv.ca and click on W5.

The program runs again tomorrow at 1:00 p.m.

[Mike & Jean]

You can now view the "Medicare for Autism Now!" Ontario campaign tour summary, complete with photos on our blog:

http://www.medicareforautismnow.blogspot.com

[Mike & Jean]

“Medicare for Autism Now!” Ontario Tour – April 13th to 20th

We returned from our Ontario “Medicare for Autism Now!” campaign tour just over a week ago. I apologize for not providing this update sooner, but as all parents of children with autism know, family priorities must come first.

We made the trip to Ontario primarily for three reasons:

1. To continue building a national coalition, which includes Ontario parents/activists who are prepared to participate in our “Medicare for Autism Now!” political campaign in the next federal election to have autism treatment covered under Medicare.

2. To introduce our “Medicare for Autism Now!” non-partisan political campaign and establish relationships with Ontario parents, supporters, other voters, and local media in Parry Sound-Muskoka and other key target Ontario ridings.

3. To gain national “earned media” for our campaign.

I am pleased to report that we succeeded in meeting all three of our objectives! Following is a more detailed description of the week’s events.

David Marley, our political strategist and I arrived in Ottawa late in the evening of Apr. 13th.
Monday, Apr. 14th began with an interview with Canada AM which went extremely well. We were then joined by Stefan Marinoiu. As many of you know, Stefan lives in Toronto with his wife Bernadette and their three children, Lia who is 17, Simon who is 15 and severely autistic and Paul who just turned 6. Simon has never had the benefit of any intervention quite simply because the system failed him and his family. Last February, out of desparation, Stefan walked from Toronto to Ottawa (450 kms.) to raise awareness about the autism crisis in Canada. After 11 days of walking, he met with health minister Tony Clement for about 15 minutes, only to be told…. “this is a provincial issue”…no questions or concern for Simon, or Stefan, just more political indifference.
Thanks to the kind donations of many of you, Stefan got to fly to Ottawa this time! Stefan spent the rest of the week campaigning with us….so now…our Travels with Stefan.

Stefan, along with David, Senator Jim Munson, Senator Norman Atkins, MP Andy Scott, MP Shawn Murphy, MP Dawn Black and myself all spoke at our “Medicare for Autism Now!” press conference which was held in the Charles Lynch press room on Parliament Hill at 11:00 on Apr. 14th. The support for our campaign on Parliament Hill is growing as is the media attention. Our initiative is being taken seriously. When we had a press conference last May, one camera attended; there were 7 on Apr. 14th. including W5.

On Monday evening we drove up to the town of Huntsville which is in our federal health minister Tony Clement’s riding of Parry Sound- Muskoka We spent the next three days campaigning and “main-streeting” in Huntsville, Gravenhurst, Bracebridge, Parry Sound and Orillia. We met with all the editors of the local newspapers and their advertising managers. We did an extensive interview with the Bracebridge Examiner and the Parry Sound
North Star.
We distributed brochures and other hand-outs to hospitals, clinics, libraries, recreation centres, senior centres, community colleges, legions, coffee shops, and even paid a visit to Minister Clement’s constituency offices in Parry Sound and Huntsville. We really worked the room! It was a very interesting experience to say the least and we learned some very valuable lessons: Not one person, and I mean, not one person asked, “What is autism?”….sadly, it seems like everyone we spoke to knows someone who has it. And….everyone we spoke to without exception agreed autism treatment should be covered and supported our initiative to secure it. It is also abundantly clear that support generally for Mr. Clement is extremely weak. The support from the people who live in Parry Sound-Muskoka was no surprise to us. Why? Because Canadians are fair-minded people who expect our government to do the morally right and economically sensible thing by our children.
Throughout our Travels with Stefan, he shared stories of other fair-minded Canadians he met during his trek from Toronto to Ottawa. He told us of people who were “strangers” stopping their cars to ask if he needed help, gave him money, paid for meals, alerted restaurant owners to provide him with anything he wanted. These “strangers” paid for his hotel accomodation, in one case, opened their own home to him to provide food and shelter. A church congregation gave him all of their Sunday collection and bought him new boots and gloves. All of these “strangers” or fair-minded Canadians heard Stefan’s story, which is sadly the same story of countless other Canadian families dealing with autism, and responded with overwhelming support and encouragement to “keep on going – your cause is just!”

On Wednesday, the 16th while in Parry Sound, I did a phone-in talk show interview from the editor’s office in the Parry Sound North Star with the Ottawa radio station CFRA which aired from 1:20 to 1:40 p.m. I managed to do this after “calming the hystrionics and bad words” which filled the air after David locked the rental car keys in the trunk along with most of our materials….thank goodness for locksmiths! About our rental car – it was a black Charger with tinted windows and a spoiler….we looked like we came out of “Smoky and the Bandit.” Just before the “key incident” we happened to park the car beside a vacant store which had a poem about walking posted in the window….Based on Stefan’s walking experience, the wording seemed very poignant so I took a photo for you all to see.

On Thursday, the 17th. we drove to Toronto via Orillia and Barrie where we stopped in at the Orillia Packet and Times and the Barrie Examiner. We were joined that evening by Harold Doherty who is a dad and very effective advocate from Fredericton, New Brunswick. Check out Harold’s blog: “Facing Autism in New Brunswick” at http://www.autisminnb.blogspot.com We met Harold last May when we were in Halifax. He is going to co-ordinate our political initiative in the Maritimes. Harold flew from Fredericton to join us in Toronto to meet with media and speak at our “Medicare for Autism Now!” rally in Oakville. That evening David, Harold and I had dinner with Stefan and his family. Bernadette provided a lovely meal and warm hospitality. Meeting with Stefan and his family and particularly meeting Simon, who is 15 and has never had intervention was a shocking reminder to me personally of why we must have autism treatment universally accessible under Medicare! Our son is one year younger then Stefan’s son. He has benefited from 11 years of intervention solely because we had the means to provide it….that’s all! That this situation still exists in Canada where we have had Medicare for almost 40 years and a Charter of Rights and Freedoms for 25 years is no longer acceptable! The evening provided a sharp reminder that our expectations are reasonable because all our children, regardless of where they live, or how much money their families have are indeed worthy of treatment!

On Friday, the 18th we met with the producers of W5. They are producing a program about our political initiative which is scheduled to air on May 10th. After an extensive interview with Sandi Rinaldo we had lunch and further discussion with some CTV NEWS producers. They are extremely interested in our initiative and have expressed interest in covering it during the election campaign….national “earned media” – just what we need! Friday afternoon, we met with Bob Rae who is the Liberal party’s policy co-chair. We had a very frank and useful conversation with Bob who listened closely, asked lots of good questions and demonstrated a pretty good understanding of the issue and the “road-blocks” More on this in due course. Friday evening, we met with Deborah Coyne who lives in Toronto, is a mom, a constitutional lawyer, will be seeking elected office in the next federal election and is a supporter. Check out Deborah’s blog: http://www.canadianswithoutborders.blogspot.com We also met with Gordon Shreeve who is a seasoned campaign organizer. Gordon does not have a child with autism but he is committed to helping us organize some of the Ontario target ridings. He is a wonderful addition to our team!
On Saturday, the 19th we had our “Medicare for Autism Now!” rally in Oakville. About 40 people attended mainly from Burlington, Oakville, Mississauga and Toronto. Jennifer O’Brien was the local organizer and did a fabulous job! The speakers included: Stefan, Harold, Deborah Coyne, Barry Hudson who is a dad of a 4 year old from Mississauga, David and I. Norrah Whitney who is the director of FEAT Ontario also said a few words. Our message was well received! The turn-out was reminiscent of where we were one year ago in BC, but the people who attended were motivated and ready to go! W5 attended and filmed the whole two hours plus interviewed a number of people. One of the W5 producer’s wife who owns a pre-school and the W5 production manager also attended. Our day concluded with one more meeting…we met with another very talented political organizer, and former leader of the BC Green Party named Stuart Parker. Stuart is doing a PhD at the University of Toronto and is an associate of David Marley’s. He has committed to helping us with some of the Toronto ridings during the election. His skills and smarts will be tremendously helpful to us.

Whew – that’s it! We flew home on Sunday the 20th and have pretty much being playing catch-up!

We would like to thank all of you who so generously donated money to make this trip possible! In order to move forward with the next steps, we need to raise more money •••.a.p. We want to do an advertising campaign in Parry Sound-Muskoka which will run all summer. We are asking the papers for quotes right now. We need your help to make it happen. We also need to raise money to cover our next trip, which will be during the election campaign. Stay tuned for information about upcoming fund-raising events! In the meantime, please feel free to donate:

Cheques are payable to:

Medicare for Autism Now
C/o Suite 425 – 1489 Marine Drive,
West Vancouver, BC
V7T 1B8

Or email us at: mfanow@gmail.com

In the next week, we will be adding this narrative plus video of the Ottawa press conference, the Canada AM interview, the CFRA radio interview and many photos of the entire Ontario tour including the Oakville rally to our blog…check it out at:

http://www.medicareforautismnow.blogspot.com

Remember to tune into CTV’s W5 on Saturday, May 10th. Check your local listings for time and channel.

[Jemma Lee]

Hi Everyone,

Many of us have doubted the usefulness of the Wechsler test for measuring treatment progress, since the test is so heavily language-dependent. I have seen my own child lose points on many questions that I know he should be able to answer. I suspect the results of the Lovaas study would be more impressive if a better test was used.

The researcher Laurent Mottron recommends the Raven test, but I think his research has been distorted by a dishonest research partner. Another researcher Peter Tellegen says:

"Nonverbal alternatives for intelligence assessment like Raven's Progressive Matrices (Raven, Court & Raven, 1983) and the Test Of Nonverbal Intelligence (TONI-2; Brown, Sherbenou & Johnson, 1990) have the drawback that they are unidimensional tests which do not allow for generalizations to a broad area of intelligence."

Would you please share your experience as to what testing has been useful for your child?

Thanks.

Jemma

[Author]

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