[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

[Laurie Guerra]

Just wanted to pass on some hope for those in the trenches………

My son just turned 16 and on his birthday got his Learner's license. There were other children getting their "L" on that day too but there weren't any other parents with tears running down their cheeks when they got it. That boy couldn't talk until he was 6!!

Thanks to this forum and esp. Sabrina and Jean, I learned what to do, did it and now I have the best outcome.

My child has recoverred, but now the work starts! I will be there on April 30 for the Medicare for Autism Now seminar and so should you. Science-based treatment works and it needs to be available to EVERY child in this country who needs it.

Together we can make it happen!!

Laurie Guerra

[T. Chiao]

Hi Joanna,

Thanks for your advice and taking the time to write.

Our son is being re-assessed at the end of the month; we anticipate he'll receive a diagnosis.

As you suspected, I'm new to FEAT and still learning about autism and the basics of an ABA program. It should have occurred to me that parents would only feel comfortable responding to a private email to share personal experiences.

All feedback regarding Kimberly Kirsch, Sara White, and Anna Matchneva is much appreciated.

Tina
604 961-5212
tchiao@hotmail.com

[Joanna Ng]

Hi Tina.

Reading from your 2 postings on Feat, I suppose you are new to this community and Feat. While parents love to help whenever they can, please be reminded that unless we have information that we would like to share openly, I am afraid no one would reply your question since you have not included your personal email.

Any comments regarding specific individuals [eg Behavior Consultants, etc] openly would be improper. So, if you include your contact [email], I think you would get the info you need.

On the other hand, within the last year, centre-based agencies have flourished. These agencies are very attractive to families whom both parents are working and so, making it difficult to have home-based ABA. Apart from having very, very, very little control over and knowledge of the ABA therapies, the fees can be amazingly shocking.

[T. Chiao]

Does anyone have any feedback on Kimberly Kirsch (from Early Autism Project) or Anna Matchneva (from I Step Ahead)?

We are ready to select a consultant now and would appreciate hearing other families' experiences with these two consultants.

Many thanks!

[Mike & Jean]

Hello everyone,

Today, we launched our new and improved website – http://www.medicareforautismnow.org

One of the reasons we've done this now is to help and encourage parents and supporters to participate in the current federal election.

We agree with Get Your Vote On when they say, "The world is run by those who show up…"

To further the cause of Medicare coverage for science-based autism treatment (ABA/IBI) we suggest you:

1. Go to http://www.medicareforautsimnow.org click on Support Us and sign the on-line petition.

2. Click on Election 2011, find your candidates, ask them the question, and most importantly post their responses on the
our message board.

Please forward this email and website information along to others and, if you have one, "like it and share it" on your Facebook page.

Election day is three weeks from today – May 2nd. The time to take action is right now!

If you have any questions about canvassing candidates, please contact us at mfanow@gmail.com

[Super Dad]

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:

a presentation on
The National Standards Report
conclusions from the National Autism Center’s exhaustive review
of scientific evidence behind each type of treatment

by
Glen Davies, Ph.D., R.Psych.
Director, ABLE Developmental Clinic

at
7:00pm, Tues Apr 19

in the
Oak Room
in the South Building of the
Delbrook Recreation Centre

GUEST SPEAKER:

We are very pleased to have Dr. Glen Davies as our guest speaker. Dr. Davies is by far the most respected child psychologist within the autism community, not only because of the work he performs directly with children, but also because of his efforts toward protecting their rights.

TOPIC:

The National Autism Center is a not-for-profit center for autism in the United States committed to evidence-based practice. In September 2009 the NAC published their exhaustive review of the treatment literature for children with autism spectrum disorder. This review relied on the expertise of nearly 100 respected researchers in the field of autism, including Gina Green and Tristan Smith, and reviewed more than 7000 studies including over 1000 for detailed analysis. They rated studies on pre-established criteria of scientific merit and described the level of evidence for each of the common and not so common treatments for ASD, classifying them into the categories of: Established Treatments, Emerging Treatments and Unestablished Treatments. See how ABA compares to other approaches. Find out what level of evidence there is for ABA (and other treatments) for children of different ages, diagnostic classifications, specific skills increased, and behaviors decreased.

You can take a look at these ahead of time:
http://www.nationalautismcenter.org/pdf/nsp_report_overview.pdf
http://www.nationalautismcenter.org/pdf/NAC%20Findings%20&%20Conclusions.pdf

Dr. Davies will also provide an update on the Pacific Autism Family Center. Since the announcement by the Premier in February, there has been considerable debate on the PAFC’s benefits and risks. As a member of the advisory committee, he can provide more insight into the project.

DIRECTIONS:

The Delbrook Recreation Centre is at 600 West Queens Road, North Vancouver:
http://maps.google.ca/maps?q=600+West+Queens+Road,+North+Vancouver,+British+Columbia

For those going north/west on Highway #1: take exit 17 for Westview Dr, turn right at Westview Dr, and then turn right at Queens Rd. For those going east on Highway #1: take exit 17 for Westview Dr, turn left at Westview Dr, and then turn right at Queens Rd.

Coffee/Tea and snacks provided. Donations are greatly appreciated (but not required).

Please RSVP to Carol at <colemanmoser@hotmail.com>.

Carol, Anya and Domenica
(Co-facilitators for ASBC North Shore Group)

[Mike & Jean]

Hello all FEATsters….

Tune into the Bill Good Show tomorrow, Monday, April 11th at 11:30 am to hear former FEAT director Jean Lewis and Medicare for Autism Now! director David Marley discuss their upcoming advocacy workshop – "Getting it Done!" scheduled for April 30th.

Topics to be discussed:
The "Getting it Done" advocacy workshop – why it's needed now – particularly the school segment, with the BCTF "focusing" on our kids in their upcoming contract negotiatons.

We will also discuss our upcoming documentary film, working titled:
"Medicare's Orphans – Canadians unworthy of treatment" Together with other topics, the film will chronicle the history of the autism treatment movement in BC and other parts of Canada.

And – What Medicare for Autism Now! is doing during this federal election, why you should participate, and how you can get involved in the campaign to get Medicare coverage for ABA.

It should be an interesting program. Tune into CKNW 980AM at 11:30 to join the discussion. The program can also be heard at a later time by going to their audio vault.

Please share this notice with your Facebook friends.

[Barbara Rodrigues]

Very awesome Dave. While I don't judge if you use meds I am not a big fan for our kids as usually they don't help in the way that people want and come with all sorts of side effects including behaviors. That said again it's your child I don't live your life – it's your choice – no judgement BUT we are also drug free (although we are a very low dose of antiseizure meds that I fought for 4 years but ended up having to do due to status seizures) but it was never for behaviors and in fact increased behaviors at first.
That said – We have also managed at the age of 17 to get here with ABA only and that includes the horrid puberty ridden early teen years. I am a big fan of ABA – not just because of the science that backs it but because I see it works – it's not easy -it's not cheap and it is time intensive and it needs to be tweaked and figured out for your specific child/behaviors -goals – but it offers the best results for all our kids -regardless of where they are on the spectrum.

Again way to go Mr. P!

Barbara

[David Chan]

Just finished a consult. Always feel better about the kid after one.

Its been a long road. He was 6 when he started, he's 19 now, living at home. Not perfect, but we get along, he can do some things independently, like take the bus for short distances, do some shopping at the store, have short conversations with.

Not a bad guy, and pleasant enough indeed.

Sitting and reflecting we realize that through out the years with a short period with ritalin in elementary school, grade 5 i think,( I'm sure it did more for the teacher, than for him. ) I think we disncontinued using Ritalin grade 6.

From age 12 to now 19 and bit, all the remediation has been and continue to be behavioral.

Of course remediation today looks nothing like when he was 5, but still, drug free. Pretty cool. And please, P's mum is a pharmacist, we understand that pharmaceuticals when used properly can remediate all manner of conditions. Pharmaceuticals are not evil.

I understand that autism is spectral, every kid is different, but as it were for this kid.we have been fortunate enough, that P's autism is been remediated by ABA only.

How about that.

Just an observation, not data, but I must say. very reassuring.

Still on the journey,

Mr. P's Dad

[Bev Sharpe]

Attention all would-be advocates: parents, grandparents, family members, and friends: Do you want to know how to effectively advocate for your child? Are you tired of going in circles trying to get what your child needs? If so, this is a workshop you cannot afford to miss. Learn how to be an effective advocate for your child at any age and stage. Take this rare opportunity to learn effective advocacy skills from people who have been leaders in the autism advocacy movement for the last 15 years.

Circle the date and register today!

Beverley

Going in circles trying to get what your child needs?

If so – circle the date – Saturday, April 30th

The Medicare for Autism Now! Society presents:

“Getting it Done!”

…an “on-the-job * hands-on * this is how you do it”

Advocacy Workshop

Presenters: Jean Lewis and David Marley – founding directors of the Medicare for Autism Now! Society

and..

Guest speaker: Paul Caune, founder and executive director of Civil Rights Now!

Topics will include:

Advocacy 101

“It is not enough to be compassionate. You must act.”

As the parent of a special needs child, you must represent your child’s interests at school, in the community, everywhere. You cannot leave this job to others!

Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills:

This workshop will teach you how to:

· Gather facts, organize information, get ready

· Understand the Rules of the Game

· Plan and prepare for success

· Document, document, document

· Ask the right questions…listen to the answers

· Identify problems and propose solutions

· Drive the process

Advocacy at School

“A good education is the next best thing to a pushy mother.” Charles Schulz

This workshop will teach you how to:

· Become your child’s case manager

· Understand your school district’s Rules of the Game…who are the players and decision makers?

· Overcome objections and pitfalls

· Design an effective IEP

· Create effective paper trails, prepare documentation and letters

· Prepare for and manage school meetings

· Understand and use the Hewko decision

Autism treatment funding – securing its

future:

The landmark Auton decision is the only reason any autism funding exists today. This funding is in jeopardy because there is no statute law to protect it. The decision to continue funding or not can be made on a whim by provincial politicians.

· Learn the history of the fight to have medically necessary autism treatment universally accessible and covered by Medicare.

· Learn why we need a Canadians with Disabilites Act and an Individuals with Disabilities Education Act.

· Learn about recent and future initiatives to enshrine autism treatment under Medicare

· Learn why your children need you to get involved

We believe people learn best by “doing” rather than watching – so – be prepared to participate and receive on-the-job coaching. We promise you have never had this much fun in the school principal’s office. Several “guest players” will help us create some of the most common and troubling “school scenarios” for us to practice our newly-acquired advocacy skills.

Register today – don’t miss out, limited spaces available.

Saturday, April 30th _ 8:30 am to 3:30 pm

Burnaby Heritage Village Carousel Activity Room

6501 Deer Lake Avenue, Burnaby BC

$119.00 per person/$189.00 per couple – lunch included

*All proceeds will go to Medicare for Autism Now’s advocacy initiatives

To register: Email: mfanow@gmail.com or call 604-290-5737

About the presenters:

Jean Lewis:

Jean has been actively involved in the autism treatment movement since 1996, when her youngest son was diagnosed with autism. She became the co-founder and leading spokesperson for FEAT of BC (Families for Early Autism Treatment of BC), an organization dedicated to obtaining science-based autism treatment (ABA) within BC’s healthcare system. Jean was the co-chair of the litigation steering committee for Auton, a Canadian landmark Charter disability case. She performed the same role in Hewko, litigation aimed at ensuring children with autism gain equal access to BC’s education system.

In 2008, Jean co-founded the Medicare for Autism Now! Society, a non-partisan, national advocacy group focused on making science-based autism treatment (ABA) universally accessible and covered under Medicare. Since 1996, Jean has advised hundreds of parents about advocacy, treatment and education issues related to autism. She has presented at numerous rallies, workshops and conferences in BC, Ontario and the Maritimes. Jean is also a member of Civil Rights Now! board of directors.

David Marley:

David has spent his professional career as a trial lawyer, public policy analyst or senior political advisor at both the federal and provincial government levels. Since 1972, he has performed leading roles in over a dozen election campaigns in BC or Ontario. David’s political activity has involved organizing and presenting at many campaign schools and constituency association training sessions.

Throughout his career, he has served as a director of various not-for-profit organizations including, Medicare for Autism Now! and Civil Rights Now!, providing them with strategic counsel. In 2005 and 2008, David designed and helped implement a national political strategy for FEAT of BC and is a co-founder of the Medicare for Autism Now! Society.

Guest speaker: Paul Caune

Paul is the founder and executive director of Civil Rights Now! which is a non-partisan, all volunteer, not-for-profit society which advocates for public policy changes which will provide British Columbians with disabilities with equal access to the equality provisions of our Charter. He is also a board member of Medicare for Autism Now!

[Author]

Replies