[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

[Bev Sharpe]

Thank you Andrew Kavchak for sharing the letter you sent to The Globe and Mail.
Sabrina Freeman is the single reason that my child and thousands of others across this country, are in bonafide treatment programs. Dr. Freeman founded FEATBC in 1996. Sabrina had the clear, concise, single message, "Applied Behaviour Analysis is the only scientifically, data-backed treatment for Autism."
Sabrina Freeman educated myself, and countless other parents. She, along with a small group of brave FEATBC parents, spearheaded the Auton and Hewko cases.
Her blog, "Autism Pundit" is a must read, as are her books listed at the right hand side of her blog.
My wishes for this New Year is:
1. That every parent educate themselves about Autism treatement and that every child with a diagnosis of Autism get started in an ABA program immediately.
2. That the efforts of Medicare for Autism Now! (thank you to the founders: Jean Lewis and David Marley) are successful in getting Applied Behaviour Analysis covered under Medicare.
3. That every parent,ABA therapist, Grandparent, neighbour, Canadian citizen that cares about children with Autism, learn from the recently released film, "Medicare's Orphans" (on the Medicare for Autism Now! website – it is free)that there is no room for complacency. Raise your collective voices to lobby the politicians at all levels because we need Medicare for Autism Now!

Beverley Sharpe
Proud parent of Miss A
Proud FEATBC member since 1997.

[Barbara Rodrigues]

Well said Andrew! Sabrina is still a part of this list. She also has a new blog which you would DEFINITELY enjoy……

http://autismpundit.com/files/c711821302c3d2f65804981179dd5ec9-98.html

Barbara Rodrigues

[Andrew Kavchak]

Hi Folks,

Today the Globe and Mail carried a front page article about the Order of Canada called "How do you earn one of these?". It contained interviews with some of the newly-announced recipients as well as a list of all the people who were just awarded the medal. There are three categories, companion, officer and member.

In the member category, I saw the name of Margaret Spoelstra, the head of the Autism Society of Ontario. As a parent of a child with autism in Ontario, I contacted Margaret Spoelstra in January 2004, shortly after my son's diagnosis. While she said many comforting words over the phone, she did not suggest any meaningful and concrete steps and certainly gave me no reason to hope. We were on waiting lists and she told me she was sorry to hear that. In fact, she even expressed surprise that we were on a waiting list for respite funding, even though I subsequently found out that such waiting lists were common. Despite her claim that the Autism Society of Ontario is the voice of the community, I subsequently read her submissions to the department of Finance at budget time and found them to be seriously lacking in substance and offering a very poor reflecting of the desperate situation that many families in the community faced. Accordingly, I did not renew my membership in her organization and have been challenged to find any justification to join again.

However, I just sent a letter to the editor of the Globe and Mail that I wanted to share with you. If any of you have Dr. Freeman's email, please forward a copy to her. Thank you. Happy new year everyone!

Andrew Kavchak (Ottawa)

Dear Editors of the Globe and Mail,

In addition to interviewing victorious recipients of the politically-charged Order of Canada ("How do you earn one of these?", Dec 31, 2011), I would be interested in knowing what your investigative reporters could uncover about the process of awarding these symbolic tokens and how (dys)functional and (in)effective the Governor-General's bureaucracy is. While your published list of new recipients is interesting, the publication of a list of high profile rejects might be even more revealing and informative.

Having had a son diagnosed with autism in late 2003 my family and I received an instant and lengthy hands-on course in the deficiencies of Canadian healthcare, education and social service "programs". It was a shocking eye-opener. My family spent $40,000 in the private sector in the first year of autism treatment without even a few crumbs of financial assistance to pay for respite care. However, we were hardly the first family to discover that Medicare discriminated against autism by not providing any public health coverage for treatment. The more I researched the autism treatments and public policy, the more my attention was directed to a remarkable lady in Vancouver by the name of Dr. Sabrina Freeman who struck me as being the foremost advocate for early intervention autism treatment. She not only wrote books on how to teach kids with autism to speak, she was also a leader in the creation of the Families for Early Autism Treatment (FEAT) of B.C. and most importantly, was a critical team member in the class action "Auton" lawsuit against the provincial government. While the courts of B.C. found the lack of autism treatment in Medicare to be a violation of the equality rights in the Charter, the case was appealed to the Supreme Court of Canada (which overturned the appeal courts' decision). It was there, while demonstrating outside the Supreme Court of Canada building during the hearings in June 2004, that I had the pleasure of meeting Dr. Freeman whom I can only describe as a hero. It was then that I decided to nominate her for an Order of Canada. However, nothing would prepare me for the frustration and disbelief I subsequently encountered with the Order of Canada nomination process.

It took several years before the Governor General's staff informed me that Dr. Freeman had not accomplished enough in her lifetime to be considered for an Order of Canada (nonsense). However, I was told that she might be considered for a Meritorious Service Award. And now, seven years (going on eight) since making my initial nomination, I am still waiting for a final decision. I have contacted the GG's staff on an annual basis for updates and have been shocked at how they have repeatedly come up with "program review" excuses to explain delays lasting for years. Following the appointment of the current GG I immediately wrote to him to draw his attention to the fact that his award program was dysfunctional. I subsequently received a letter from a bureaucrat telling me "as you know, the program is under review"…again.

How many years does it take to determine whether a person is deserving of a symbolic token in recognition of outstanding work to help the disabled? Which other nominees who have struggled with incumbent powers to improve the lot of the disabled and disadvantaged have been denied recognition for their outstanding leadership and advocacy work? Notwithstanding this disgraceful mismanagement of what could otherwise be a cultural treasure, I trust that the Canadian establishment and elite are comforted and reassured knowing that another former Prime Minister has secured his promotion to "Companion" of the Order of Canada.

Your truly,

Andrew Kavchak

[Bev Sharpe]

Holiday greetings to those of you running a bonafide, ABA treatment program for your children.

My daughter put every ornament on our Christmas tree by herself this year, correctly identifying each one. She participated in her school’s Christmas choir, singing Christmas Carols. She also participated in line-dancing at the Christmas dance on the last day of school before Christmas break.

My daughter is now 17 yrs. old. She has been in an ABA treatment program for 14 yrs. All of her achievements were due to the thousands of hours of one-on-one treatment. This treatment has enabled her to enjoy the Christmas activities that typically developing children enjoy.

I now look forward to Christmas morning, as my daughter has learned how to open presents, turn-take with gift-opening, and even clean up the wrappings after the gift-opening is finished.
My Behaviour Consultant, Miss Shelley Davis, specifically designed programs for each one of these achievements.

It is vital that this science-backed, peer-reviewed, bonafide treatment for Autism be covered by Medicare. Please take time this holiday season to view the film, “Medicare’s Orphans” on the Medicare for Autism Now! website.

Thank you to Jean Lewis and David Marley, founders of Medicare for Autism Now!, who spent 2 years on this film which chronicles the 14 years of advocacy, litigation in a succinct 42 minute documentary.

Sincerest thanks to Dr. Sabrina Freeman who founded FEATBC in 1996, bringing the message to Canada, that Autism treatment exists, it works, and it is called Applied Behaviour Analysis. Her blog, “Autism Pundit” is a must-read.

Beverley Sharpe
Proud parent of Miss A
FEATBC

[Mike & Jean]

Tomorrow, November 30th. – tune into Vancouver's CO-OP Radio 102.7FM and listen to Medicare for Autism Now! co-founders, Jean Lewis and David Marley discuss their recently released documentary, Medicare's Orphans – a film about the fight to get healthcare for children with autism in Canada. Watch the 42 minute film at: http://www.medicareforautismnow.org Leave a comment, sign the on-line petition and forward the link to others, requesting they do the same.

Want to host a screening/discussion party? Want to have us attend and talk to your group about why we made this film and what the next steps are? Contact us at mfanow@gmail.com

[bsharpe]

Thank you to all the Burnaby parents who responded to my post.

Elections in our school district are just around the corner and I want to reach as many ABA parents as possible with some important info. about the stand on education for our autistic children, by the candidates. PLEASE CONTACT ME at nobullyingkids@gmail.com

[Mike & Jean]

Our documentary film is finally done!

"Medicare's Orphans" – a film about getting healthcare for children with autism in Canada produced by Medicare for Autism Now! Society.

"Political activity is demonstrably effective…People who say otherwise ignore the history of our country." – Rev. Dr. Reg Stackhouse.

"For those parents who say they are too broke and too tired…you need to take your heart into your teeth and go on…and go on." – Stefan Marinoiu.

Please watch the film at http://www.medicareforautismnow.org leave your comments, like it and share it on Facebook, Twitter etc. Spread the word!

[Mehdi Hassanzadeh]

Hi Mike,
Thanks for the information. You are absolutely correct about the criteria in your post. They ran a phone interview with me and they did ask about certain things like whether the therapist had to bring materials with them and who would pay for those or about training to recruit them etc…
I did not know they would use it against us. We both know that every family running ABA provides on-the-job training according to the child's program, and buys material that is tailored for the child's specific needs.
We do have contracts with our therapists that we both sign and it states in our contract that the therapist is responsible for filing and paying their income tax but we dont mention about other deductions because we never put so much thought in it. We pay them by their invoice and that's it.
This may be opening the door for CRA to nail families like us who are so involved with their problems in life and don't see the technical aspects of these things the way CRA is expecting…we are not certified accountants or experts…we are simply trying to save our children in day to day battle and with our focus elsewhere….
Just imagine if they want to target us for every single therapists we have had!!!
Any advise??
Thanks again,

Mehdi

[Mike & Rachel Goetz]

This is in regards to Mehdi's post last week, who received a ruling that an old therapist was considered an employee.

I have some experience in the past with the CRA and the fine line between self-empolyed and employee. As far as the government is concerned, this is a grey area and there are certain factors that they consider when making a ruling.

It is very important that all parents running an ABA program understand the conceptual differences between self-employed and employee. You need to remember that your therapists and consultants are independent contractors; they are *not* your staff.

You as a parent should think of yourself as the one who is paying for the services of the contractor. I see lots of postings where families are looking to "hire" a new therapist for their team — be careful that you don't think of it as though you are the employer bringing on a new recruit.

This link is the CRA's guide for determining employed vs self-employed: http://www.cra-arc.gc.ca/E/pub/tg/rc4110/rc4110-e.html

Some of the factors that contribute to the decision include:
* control
* tools & equipment
* financial risk
* opportunity for profit

I would also recommend families set up a contract with their therapists that both parties sign, so that the working relationship is understood by both sides. Pay particular attention to the aspect of "control" as described in the CRA link. For example, you should not stipulate that the therapist must provide services for a minimum length of time.

Consider this statement from the CRA guideline, which attempts to clarify the type of relationship that a self-employed worker should have with his/her payer:

"The working relationship between the payer and the worker does not present a degree of continuity, loyalty, security, subordination, or integration, all of which are generally associated with an employer-employee relationship."

— Mike

[Mehdi Hassanzadeh]

Hello all,

I am asking this question from all of you out there and if there is anyone out there who have had experience in this regard, I appreciate their comments.

I have already checked the website "Autism Funding in BC" but there was nothing that could help me out with this case!

we are being targeted by the CRA. Last month, we were being questioned about an old therapist that left us in 2008. They would not tell us much about their investigation ( they called it phone interview) but wanted to know what was the nature of our therapist employment and we told them how it works out based on paying them by the hour in full rate via invoice and that we have contracts in place that stresses on the responsibility of the therapist on their income tax and deductions.
Last week we received a letter from the ruling officer that had ruled the therapist was deemed an employee and that under the Pension Act, her employment was pensionable as well as Insurable so we are on the hook for paying her pension and EI dues!!!!!
My question is what is next in line for families like us??
As far as I am aware, most of the families pay their therapists in the same fashion, am I wrong??

If I am correct, then we need to address this at large otherwise we will be liable for every single therapist we have had so far..you do the math!!

Regards,

MH

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