[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

[Kandi Kilgour]

where can we see who voted for it and who voted against it?

Kandi

[Mike & Jean]

The next step?….is a continuation of the F.E.A.T. political strategy from the last federal election. We will targeting very specific constituencies across Canada.

Votes are the only thing that creates political will.

Watch Global-National @ 5:30 p.m. tonight.

Jean

[Norm Tailless]

I watched it online on CPAC. It seemed they mostly voted along party lines and defeated it. The number seems about right.

What's the next step?

This thing gets no media attention. It's hard to compete with Bill Gaets shaking hands with the PM…..

[Andrew Kavchak]

Hi Folks,

I heard…but still need to confirm, it appears that Bill C-304 was defeated 155-112.

[Lisa Castle]

In regards to Nina Grewal, a friend of mine contacted her over the past few days, regarding Bill C-304. In her response, she clearly stated that she will be voting against this Bill.

Dear XXXXXX:

Thank you for your recent correspondence asking me to support private member’s bill C-304.

The Canadian Government recognizes that Autism Spectrum Disorders (ASD) is an important concern and is committed to working with our partners – provinces, territories and other stakeholders – on this important issue

In Canada, approximately 200,000 people are living with autism. Autism not only affects the individuals, but also their family, friends and caregivers. Though much progress has been made in research, care, and education, we still do not know what causes autism spectrum disorder or how to cure it.

The federal government already supports research on ASD through the Canadian Institutes of Health Research, which has invested nearly $15 million since 2000, and knowledge dissemination through the Public Health Agency of Canada's investments in the Centres of Excellence for Children's Well-Being. In addition to those measures, the federal government intends to:

Sponsor an ASD stakeholder symposium in 2007 to further the development of ASD knowledge and dissemination among health care professionals, researchers, community groups, teachers, individuals and family members;
Begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD;
Launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada to help shape appropriate ASD programming and research;
Create a dedicated page on the Health Canada web site to guide the public to ASD information available through the Canadian Health Network and other resources; and
Designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level.

As the government, we are confident that these initiatives will help to better address the many challenges individuals with Autism Spectrum Disorder and their families are facing.

As for Bill C-304, while the intention behind the proposed legislation is noble, the solution being offered is unacceptable. The responsibility for delivering health care services in Canada rests with the provinces and territories, and it is at this level that the issue must be addressed. Amending the Canada Health Act to include behavioural therapy, as suggested by Bill C-304, is not an appropriate response to this issue. My party and I, therefore, cannot support this bill.

Although I will be voting against Bill C-304, I sincerely hope the awareness that is being created by the debate will empower the people who are affected by autism and help ensure that the provinces make the right decision in how to manage their health care systems in respect to this terrible disease.

Thank you for writing to me on this important issue. If you have any further questions or concerns, please do not hesitate to contact my office.

Sincerely yours,

Nina Grewal, MP
Fleetwood-Port Kells

[Dione Costanzo]

Hi Everyone,

I live in the Fleetwood/Port Kells riding and have contacted Nina Grewal's office requesting support for Bill C-304 at the vote tomorrow.

I have not yet heard back from Ms Grewal or her office but found this on her web site FYI

http://www.ninagrewal.ca/news_details.asp?ID=1014

It is old news (2005) but hopefully this is an idication that she will be present and supportive of the Bill at the vote tomorrow.

Cheers,
Dione

[Andrew Kavchak]

Hi Folks,
Last call on Bill C-304! The vote is scheduled to take place in the House of Commons around 5:30pm on Wednesday, February 21, 2007. Please consider calling your MP's constituency office and ask them to support the Bill being sent to the Committee Stage in the approval process.
Thank you.

[Nicole Harvey]

Want to have a say in the 2007 budget?? Go to this webpage http://www.fin.gc.ca/fin-eng.html and scroll down to: Online Pre-Budget Consultations for Budget 2007.

I dont know if it will do any good, but it never hurts to try. Maybe we can get a lot of people making a stand about autism funding????????

Thanks,
Nicole

[Isaac]

First, I would like to thank Andrew (very much) for the time and effort consistently put into keeping our group apprised of the important, autism related action happening in Ottawa.

It's very much appreciated!

Also, I would like to speak to autism treatment Bill C-304: this is unprecedented.

The implications of the Bill, for children afflicted with this terrible disorder, are enormous. As Andrew noted in his post to our group, Bill C-304 is a landmark, pivot-point event vis-à-vis how neurological disorders should be addressed by the health care insurance system in Canada, i.e., autism must be ON A PAR with physical disorders.

As Andrew has suggested, (and I will do same tomorrow morning) please contact your local member of parliament to let the MP know how strongly you feel about passing autism treatment Bill C-304. This legislation, if enacted, would at long last establish health care parity in Canada, meaning that so-called "universal" health care will actually BE universal, meaning that access to health care insurance is for EVERYONE, including children afflicted with the neurological disorder of autism.

On a closing note, for the many government lurkers who weekly check out the FEAT-BC forum (and yes, we do check IPs), I would like to offer this thought: please ponder the fact that for every child afflicted with autism, there are — based on my assessment — at minimum 12 to 15 issue-based voters that are taking careful autism notes for the next election (i.e., 2 parents, 4 grandparents, siblings of parents, cousins, concerned friends, and so on). And, the U.S. C.D.C. now puts the numbers at 1 in 150 children afflicted! That's a lot of votes, albeit political damage that's under the radar, for now.

The math is quite clear, for any politician who cares to notice. In a close election, in hotly contested swing ridings, the new, sizable autism sphere of influence can conceivably decide elections.

Please let your MP know that you're a one-issue voter … you want Bill C-304 to become law, and you (and everyone you know!) will vote accordingly in the next election.

Isaac

[Andrew Kavchak]

For Immediate Release
February 15, 2007

MP Shawn Murphy Concludes Debate on Autism Care Bill

OTTAWA – Charlottetown MP Shawn Murphy spoke in the House of Commons Wednesday evening in the last hour of debate at second-reading stage of his Private Members Bill, C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act.

Autism, said Mr. Murphy in his speech, “is not treated in the same way as other health issues, such as cancer and heart problems. It is totally inconsistent from one province to another.” In Alberta, for example, children with autism have access to intensive behavioral treatment throughout their childhood, while children in PEI receive scant funding through the Department of Social Services.

C-304, if passed, would require the federal Government to table a national strategy to standardize the levels of treatment across the country. The Liberal and New Democratic Parties have supported the Bill so far in the debate, while Members of the Bloc Québecois and Conservative parties have opposed it. MPs will vote on whether to send the Bill to committee for study next Wednesday, February 21.

“A recent study by the American Center for Disease Control has found that one in 150 children are diagnosed with conditions that fall under autism spectrum disorder,” said Mr. Murphy. “I urge every Member of Parliament to acknowledge this health care crisis and vote accordingly. I also encourage every Canadian with an interest in this matter to contact their Member of Parliament prior to Wednesday’s vote to ensure he or she will support Bill C-304.

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For further information or transcripts:

Dirk Druet
Office of Shawn Murphy, M.P.
Cell: (613) 222-2023

[Author]

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