[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

[Andrew Kavchak]

Hi Folks,

Three politicians said something about autism in the Senate and House of Commons yesterday…

From the Senate Debates of Wednesday, March 27, 2013:

Visitors in the Gallery

The Hon. the Acting Speaker: Honourable senators, I wish to draw your attention to the presence in the gallery of Ms. Kim Peterson with her son Ryder; and Ms. Heather Rose with her daughter Molly, who are here on the occasion of Autism Awareness Day on the Hill. They are accompanied by supporters and families of children on the autism spectrum. They are the guests of the Honourable Senator Munson.

On behalf of all honourable senators, we welcome you to the Senate of Canada.

Hon. Senators: Hear, hear!

World Autism Awareness Day

Hon. Jim Munson: Honourable senators, I would also like to recognize Suzanne Jacobsen, who is in our gallery. She has single-handedly led an effort here in Ottawa dealing with QuickStart, a program that is very important to all of us and to the autistic children in our city.

Honourable senators, over the past four years I have stood on many occasions to request your support for my private member's bill, An Act respecting World Autism Awareness Day. Next Tuesday, April 2, Canada will for the first time join over 100 countries worldwide in officially celebrating World Autism Awareness Day.

Ten years ago, I began a journey to help improve the lives of people affected by autism. The people I meet by way of my involvement with the autism community are a constant source of learning and motivation.

In the spirit and perspective of our 2007 Senate report, Pay Now or Pay Later: Autism Families in Crisis, we can clearly see the life cycle needs of autism spectrum disorders people. The urgency for people and families is intensifying. A child who was 2 at the time of our report is now 8; a child who was 12 is now an adult, 18. The numbers grow. The need for our leadership and follow-up on the report recommendations is critical.

In Canada, we are just beginning to put together a national surveillance of autism program. Mostly, we still rely on American surveillance findings from the Centers for Disease Control and Prevention to determine Canadian numbers. It is estimated that 1 in 88 Canadian children has an autism spectrum disorder, up from 1 in 110 two years earlier. One in fifty-four boys has ASD.

Our federal government has to take more leadership and responsibility. This is a national issue that cries out for a collective effort of politicians and everyone involved in the autism community.

Though researchers are only now taking initial steps to study autism among First Nations youth, they are already alarmed by what they have uncovered. This issue is a federal responsibility, adding to the push for the Government of Canada to take more action.

While we, as a nation, are always increasing and enhancing services and resources for people with autism, we still have a long, long way to go. For children who are 2 to those entering into adulthood, wait times for diagnosis and treatments are excessively long. An estimated 4,900 Canadian teenagers with autism come of age every year. This number and the implications of growing from a child with autism to an adult with autism are hugely daunting. Once children with autism turn 18, they lose their pediatricians. They lose their eligibility for publicly funded speech and language services and behavioural therapy. At 21, they can no longer attend public school. Only a lucky few live in group homes, attend day programs or even have part-time jobs.

Last October, Parliament passed An Act respecting World Autism Awareness Day, and I am humbled by the respect my colleagues, especially in this chamber, and everyone else on the Hill have paid this simple act to strengthen Canadians' understanding and commitment to helping people with autism. You have contributed to an important milestone and given us a national vehicle for building our capacity to address the autism crisis. On April 2, let us show Canadians living with autism that we respect and admire them and their families and are grateful for their contributions to our society. Let this be an occasion to take stock of what has been accomplished and what we must continue to advocate for. Let us celebrate those progressive Canadian values that guide our efforts.

From the House of Commons Debates for March 27, 2013:

Autism

Hon. Hedy Fry (Vancouver Centre, Lib.):

Mr. Speaker, April 2, 2013, will be the first official World Autism Awareness Day in Canada.

Last October, the House passed Liberal senator Jim Munson's bill to mark the day. In 2007, the United Nations declared April 2 as World Autism Awareness Day in order to bring world attention to autism, which affects tens of millions globally.

Persons with autism have told me of the discrimination they face in society. Many of them function well but are often misunderstood. We must understand the nature of autism in its full spectrum. Those with autism always find it difficult to get jobs. They are seen as mentally challenged, when many of them have extraordinarily high IQs.

Awareness and understanding are key to providing the necessary supports that persons with autism need, so they can, wherever possible, function autonomously in society.

Today will be “Light It Up Blue” when landmarks will be lit up in blue, just as BC Place, Rogers Arena and Science World were last year in Vancouver Centre.

Here is to removing the stigma of autism.

World Autism Awareness Day

Hon. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):

Mr. Speaker, April 2 is World Autism Awareness Day and 15 years since my son Jaden was diagnosed. As I have shared many times here, life with autism really is an adventure, unique for every family living with it.

Our world today is one in which our 13-year-old daughter babysits our 17-year-old son, a world in which I often discover my iPad YouTube viewing history filled with Barney episodes and home video clips of airplane takeoffs and landings posted by random strangers from around the globe, a world in which visitors to our home experience odd and memorable moments, like the dinner this past summer when Jaden suddenly decided to guzzle Italian salad dressing straight from the bottle.

From time to time, when I tell someone Jaden has autism, they will mention Rain Man and ask if he has some kind of special power. The answer, of course, is yes. No matter what someone's mood is, he can bring a moment of complete joy without uttering a single word.

I have even seen him bring members from all sides of this crazy place together on occasion, and I cannot think of a more special power than that.

[Andrew Kavchak]

Hi Folks,

Well, some days I really get the impression we live in an Orwellian world where the meaning of things are inverted and rational thinking becomes impossible for the masses.

Below is a clip from a radio station website about the autism awareness event on the Hill. How can it be that an MP who was so opposed to a Senator's Bill on autism awareness because, among other things, it reflected the then prevalence rate, is now considered to be deserving of credit for his leadership?

And what has he done? Note the reference to everyone else and "top notch" organizations doing things….and what can the feds do? Support research. Yes, of course. That's great. But what about "Medicare for Autism Here and Now!"? Where is that national leadership for a National Autism Strategy that would ensure access to medically-necessary autism treatment pursuant to national standards so that people don't become "autism refugees" as they migrate somewhere else for treatment?

Of course, "That's provincial". Right. Please see my earlier post about the federal notice that they will create a national securities regulator regardless of provincial opposition to the incursion in their jurisdiction. Funny how national standards for the filling of stock prospectuses is more important than national standards for access to, and provision of, autism treatment.

But it is heartwarming to know that Mr. Lake brings his son to Parliament Hill for such events and that he gets all the support that he needs from members of all the parties, including "high fives" all over the place. Now if we could just get that support for every other Canadian with autism…

From:
http://www.cfra.com/?cat=1&nid=90624

World Autism Day to be marked in Canada

Sarah Anderson
Wednesday, March 27, 2013

Next week Canada is officially marking World Autism Day on April 2 and Wednesday on Parliament Hill more than 100 people gathered to spread awareness and understanding of the disorder affecting 1 in 88 children.

Rally organizers credit MP Mike Lake with leading the efforts to officially mark World Autism Day but he explained it's been a multi-party effort, with collaborators within the NDP and Liberal parties as well as his own, the Conservatives.

"One of the real blessings actually of my time here in seven years now in parliament is really how colleagues from all parties have come together in support of Jaden and I really do feel like Jaden's just a part of the family for everybody here, he walks around he gives everybody high fives and it's a big deal to us that we have than environment for him," said Lake of his 17 year-old-son who is on the autism spectrum.

Lake says it's crucial the government continue to support research as groups across the country vie for a national treatment strategy.

"We have some absolutely top-notch organizations across this country working on really, really big issues throughout the lifespan: what happens with treatment when our kids are young, what kind of vocational opportunities there's going to be, what kind of housing opportunities there are going to be when we're gone and our kids are senior citizens," Lake said.

He said those are the things that people across this country are focused on including experts and politicians.

[Jean Tsang]

Re: EI issues

Hi,

I'm posting this on behalf of another parent – she was contacted by CRA about EI premium assessment on one of her former BIs who applied for EI benefits in another province. Any advice on how to handle this? Does anyone know an accountant or lawyer who had success in handling these cases?

My email is jptsang@telus.net

Thanks for your help.

Jean

[Andrew Kavchak]

Hi Folks,

Well, yesterday was "Budget Day" here in Ottawa and as the dust settles, one thing caught my eye. Historically, many federal politicians, including Mike Lake, have suggested that the Medicare for Autism Now! issue is entirely a provincial matter, and the most the feds can do is set up an autism website, fund a chair somewhere, etc.

This is of course nonsense, as the Canada Health Act is a federal statute and the feds have negotiated plenty of "health accords" with the provinces, etc.

However, it is most interesting to see politicians squirm and snake their way through various issues and claim that "this is different", when they actually latch onto a cause that is dear to their hearts. For example, the Tories wish to create a national securities regulator and despite the opposition from a number of provinces and the hurdles presented by the Supreme Court of Canada, the feds keep beating the drum and delivered notice yesterday that they won't wait around on the topic. In other words, where there's a will, there's a way. All we are lacking in Ottawa is leadership and champions who are dedicated to the cause. See below…

From:
http://ca.finance.yahoo.com/news/ottawa-seeks-co-operation-prepared-alone-securities-regulator-233804671.html

Ottawa seeks co-operation, but prepared to go it alone on securities regulator

By The Canadian Press

OTTAWA – Finance Minister Jim Flaherty is sending out a notice that he is prepared to go it alone on establishing a national securities regulator if provinces won't agree.

The declaration is contained in a two-page notice in the 2013 budget, informing the provinces that Ottawa still seeks a co-operative approach with the provinces, but it won't wait forever.

"If a timely agreement cannot be reached on a common regulator, the government will propose legislation to carry out its regulatory responsibilities consistent with the decision rendered by the Supreme Court of Canada," the budget states.

The last time Ottawa tried to move ahead with a national regulator, several provinces led by Quebec and Alberta fought to stop it from intruding in provincial authority.

The Supreme Court agreed with the provinces, but left Flaherty an opening by ruling that Ottawa has a role in matters of national importance and scope, including preventing systemic risks in the financial system.

In the budget statement, the government said it was prepared to delegate the administration of its own securities legislation to a national regulator "if a critical mass of provinces and territories were willing to do the same."

But if an "timely agreement" cannot be reached, it would go ahead with legislation dealing with its areas of jurisdiction as defined by the court.
"This will include the capacity to monitor, prevent and respond to systemic risks emerging from capital markets," it said.

"A federal capital markets regulatory framework would be applied consistently on a national basis and would not displace provincial securities commissions, which would still manage the day-to-day regulation of securities activities."

It gives no time limit for an agreement, but in the meantime it is extending the mandate of the Canadian Securities Transition Office to work on the project.

Flaherty has been trying to establish a national regulator almost from the first day he became finance minister, only to be frustrated at every turn by provincial objections and most recently by the courts.

He has pointed out that Canada is the only major industrialized country without a single regulator, increasing costs to businesses seeking to raise money in Canada and making enforcement and prosecution of fraud more difficult.

[Bev Sharpe]

IMPORTANT ANNOUCEMENT

Civil Rights Now! Board members Jean Lewis and David Marley will be on the Bill Good Show CKNW AM 980 AM on Friday, March 22 at 11:00am to discuss the launch of the Think Twice campaign.

The Bill Good Show can be heard on-line if you go to here and click on LISTEN LIVE in the upper right-hand corner.

On March 22 at 11:00am please call the Open Line at 604-280-9898 or on your mobile at *9898 and tell Bill Good you support the Civil Rights Now! proposal.

[Bev Sharpe]

It is with regularity that the news is reporting stories about disabled, vulnerable or senior citizens being abused, mistreated, or being crushed under bureaucratic red-tape and government ineptitude. The most recent story is BC Representative for Children and Youth – Mary Ellen Turpel-LaFond's report titled, "Who protected him?" The facts are absolutely shocking and should make all of us, whether disabled or not, to think twice… Read the complete report at http://www.rcybc.ca

We ask – Why is it acceptable for the police to taser an 11 year old boy with disabilities? Why is it acceptable for disabled people to live in government-funded group homes staffed by completely unskilled and under-qualified staff? Why is it acceptable for disabled people living in "government care" to be locked into "safe-rooms"? Why? Because NO laws exist to protect British Columbians with disabilities. And until they do, the living conditions, healthcare, and standard of care for our disabled family member, or vulnerable parent and, one day each of us, depends solely on the discretion and whim of unelected, powerful bureaucracies.

We need laws…period. Civil Rights Now! has created a proposal to create laws which if enacted will dramatically improve the lives of British Columbians. Now – all of us need to demand that the government do so. Now is the time…the provincial election in on May 14th.

We need everyone – disabled and "temporarily-abled" to join in our "Think Twice" campaign. Come out on March 23rd. Find out what you can do. Please forward this invitation to your networks and ask that they do the same. Also – invite your local MLA and/or candidates seeking to be elected on May 14th to attend.

See http://www.civilrightsnow.ca to rsvp and for more detailed information on our proposal and campaign.

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
and help us launch the:

Think Twice Campaign

· Saturday, March 23rd.
· Coal Harbour Community Centre
· 480 Broughton St., Vancouver
· 2:30 pm to 4:30 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Jeanette Poulson, parent advocate
· Refreshments, door prizes, Q and A

Due to space restrictions, please RSVP asap to civilrightsnow.ca

Everyone is welcome!

[Andrew Kavchak]

Hi Folks,

This is an interesting article that raises some serious issues that many of us can relate to (or may in due course)…

http://www.thestar.com/news/gta/2013/03/20/family_seeks_crisis_centre_for_autistic_teens.html

[Melissa Biggs-Immonen]

Hi there (this is a repost since I forgot to include my email address),

I attended David Taylor's "Taxes and Autism" presentation tonight. I can highly recommend it, the info was invaluable.

But, I had a question that David couldn't answer. I am about to apply for the Disability Certificate for my son. My ex-husband and I are separated and we have 50-50 custody of our son. We are working amicably together to help him. My marital status is now "separated" and he is "common-law" with his new partner. So:

a) which one of us should apply for the certificate? Does it matter?

b) assuming we get the certificate, who should claim the deductions/credits for our son going forward?

My email address is mlbiggsi@gmail.com. Thanks so much!

Melissa

[Nancy Walton]

Hi Melissa,
Please post your e-mail address. It might increase responses to your post.

[Melissa Biggs-Immonen]

Hi there,

I attended David Taylor's "Taxes and Autism" presentation tonight. I can highly recommend it, the info was invaluable.

But, I had a question that David couldn't answer. I am about to apply for the Disability Certificate for my son. My ex-husband and I are separated and we have 50-50 custody of our son. We are working amicably together to help him. My marital status is now "separated" and he is "common-law" with his new partner. So:

a) which one of us should apply for the certificate? Does it matter?

b) assuming we get the certificate, who should claim the deductions/credits for our son going forward?

Thanks so much!

Melissa

[Author]

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