[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[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.

[Super Dad]

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!

Going in circles trying to get what your child needs?

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

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.

In this workshop you will:

* 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

Register Now!

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!

[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!

[Bev Sharpe]

Attention all parents, grandparents, therapists and friends of children with Autism,
Dr. Sabrina Freeman's latest book The Complete Guide for Autism Treatments is up on Amazon in a Kindle e-reader edition. Dr. Foxx wrote the foreward and the rest is a careful and meticulous analysis of all Autism treatments.
The URL is:
http://tinyurl.com/46x3dao

This book carefully explains each purported treatment for Autism, gives you the facts and data, and is a must read book. Looking for a clear no-nonsense, fact-based booK? This is the one to read.
Don't forget to register a "like" for your facebook page when you read this book, it will let other parents know that this book is the one worth reading.

A big THANK YOU to Sabrina Freeman for doing this monumental task of putting the truth about Autism treatments to paper. Children are already benefitting from the huge amount of selfless work you did when you started FEATBC and you never stop giving to the cause of children and their medically necessary Autism treatment. This book is another great resource which tells the truth, and enables parents to make the informed choice to start the only treatment program that works: Applied Behaviour Analysis.

My daughter has learned how to speak, dress herself, prepare simple meals, and is responsible for many household chores. She is doing work experience at Old Navy, and is able to sit politely at a dinner table, eat appropriately with a knife and fork and so much more My daughter, and every single child in a bonafide ABA treatment program, is a shining example of ABA – this treatment works.

[Joanna Ng]

Hi Feat readers,

To those [like me] who missed the radio broadcast by Jean Lewis and David Marley on the upcoming workshop in April 30th; here's the website:

http://www.coopradio.org/station/archives/53

BTW, it is the one on March 11, 14:00, 2011

What touched me the most and saddenned me the most too…is what Jean said, "None has worked to get the government funding for these disabled children – but litigation and focused political action". [Which is the Auton Case]

Shashi, I understand how overwhelmed you are by the massive information we have out there. However, this workshop is one which is not to be missed.

In the radioclip, I was in tears when Jean said, "If today was your last day, what would you choose to do?"

Jean: "As a parent of a disabled child, if I knew today was my last day, I'd be completely comfortable in doing what I am doing – to expect healthcare discrimination end for children with disability [autism]."

Look forward to April.

[Nancy Walton]

Shashi, I'm glad you like that website. We are all thankful to the dad who put this website out there for us.

Another good website is http://www.abasupportnetwork.com. The ABA Support Network is a parent run organization devoted entirely to supporting parents setting up home based ABA programs and improving access to quality ABA in all aspect of our children' lives. We have monthly presentations and have organized neighbourhood network groups. You can join for free and receive our notices for any ABA events or news.

[shashi maharaj]

Thank you Nancy! That site was VERY helpful. Now onto the next issue. I'm in the process of hiring a Program Supervisor and wondering if anyone has worked with ABA Centre and has any positive/negative experiences to report. I'm totally new to this so welcome any feedback. Feel free to email me at shashimaharaj@hotmail.com if you prefer to remain anonymous.

[Nancy Walton]

Hi Sashi. I believe we got our doctor to fill out the form and I do not see why you would not be eligible. Also, you can backdate the disability credit to birth I think.

But I just want to pass on to you that there is great information on http://www.asdfunding.com regarding funding and tax issues in BC. Make sure to check it out.

[shashi maharaj]

Hi, our 7-year old son was just diagnosed with Asperger's a few weeks ago. We are indundated with information right now and just trying to figure out which path to do down. Right now we are doing our taxes and by reading this site, it seems we are eligible for the T2201 Disability Credit. Does anyone know if we qualify based on 'mental impairment' and whether we can have our psychologist complete the form?

[Dione Costanzo]

http://www.globaltvbc.com/video/index.html?releasePID=5blq_WZpGzVkwCVmPctGJR_MejljZ6nq

Above is a link to a Global news clip last night regarding ongoing Autism Funding Problems. The direct funding option was taken away in September 2009 and the damage continues to spread.

This just highlights the fact that individuals with autism in this province have no legal rights when it comes to accessing health care. The government can and does change and take away funding on a whim and our kids are paying the price.

Christy needs to make good on her promise of change and putting families first. Making autism treatment universally accessible should be a priority for her please take a few minutes to contact her here and let her know that http://www.christyclark.ca/designate/

[Author]

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