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  • #75
    FEAT BC Admin
    Keymaster

    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.

     


    —-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

     


    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.

Viewing 10 replies - 1,141 through 1,150 (of 2,008 total)
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  • #1657
    Andrew Kavchak
    Participant

    Hi Folks,
    At the end of October, Federal Health Minister announced a "National Heart Health Strategy". On November 21 he announced some autism initiatives, but stressed that they do not encroach on provincial jurisdiction, and was even noted in one newspaper as saying that Canada does not need a National Autism Strategy now that we have these initiatives (that include consultation, a symposium, and a website). Today, the government announced something interesting, again involving treatment for a specific medical problem, but not autism. Any guesses as to why autism is not worthy of similar treatment?

    The passage below is from the government's website.
    _________________
    Prime Minister announces Canadian Partnership Against Cancer
    24 November 2006
    Montreal

    Prime Minister Stephen Harper today announced the establishment of the Canadian Partnership Against Cancer. The purpose of this not-for-profit corporation will be to implement the Canadian Strategy for Cancer Control, a five-year plan developed by more than 700 cancer survivors and experts.

    “The Canadian Partnership Against Cancer will serve as a clearing house for state-of-the-art information about preventing, diagnosing, and treating cancer,” the Prime Minister said. “Its job is to make sure that the best cancer care practices in any single part of Canada are known and available to health care providers in every part of Canada.”

    The Canadian Partnership Against Cancer will operate at arm’s length from government. Its board of directors will comprise representatives from cancer stakeholder organizations; the provinces and territories; patient, family and survivor groups; Canada’s Aboriginal peoples; and the federal government.

    “Make no mistake about it, the Canadian Partnership Against Cancer is going to save lives,” said Prime Minister Harper. “In fact, experts are predicting the strategy could pre-empt 1.2 million new cases of cancer and prevent 423,000 cancer deaths over the next 30 years.”

    As part of today’s announcement, the Prime Minister also named the chair and vice chair of the new pan-Canadian body. Jeffrey Lozon, the president and CEO of St. Michael’s Hospital in Toronto, will serve as the chair of the Canadian Partnership Against Cancer, while Dr. Simon Sutcliffe, the president and CEO of the BC Cancer Agency, will serve as its vice chair.

    The new body will be responsible for implementing the Canadian Strategy for Cancer Control, whose objectives are to reduce the number of new cases of cancer among Canadians, enhance the quality of life of those living with cancer, and lessen the likelihood of Canadians dying from cancer. Canada’s New Government committed $260 million to this life-saving strategy in Budget 2006.

    #1658
    Andrew Kavchak
    Participant

    Hi Folks,
    I attended the Senate Committee session this morning, and while occasionally some words were said that hit the nail on the head, other times the witnesses shot themselves in the foot. Jean Lewis did a super job, however, being on a panel with others that are not on the same wavelength regrettably did not strengthen the case.

    The Chair, Senator Eggleton, asked each panel a very strategic question at the end of session…"what are the differences between you?". What a set up for a "divide and conquer" approach! The report in May will likely say "there is no consensus therefore we cannot recommend anything apart from more study".

    There were times when the naivete of some participants was rather shocking. One Senator asked the panellists "what should be in a National Strategy?" and one guy replied something like "hundreds of things so I can't even begin to list one". Door opened, door shut. That particular witness stated that he did not have a child with autism and it showed.

    The funniest thing though to me was the ASC. President Fenton appeared. Now keep this in mind as background…two days ago she stood beside the Minister of Health, Tony Clement, as he announced a few "autism initiatives" that he himself described as "modest". The ASC responded by issuing a press release stating that they applaud the package. Yesterday in the House the Health Minister was asked about his new "website" initiative and the Health Minister indicated that the ASC applauds his announcement. However, during the hearings today one Senator asked the ASC whether they support the idea of amending the Canada Health Act to include autism treatment in Medicare and President Fenton said they do not because it would not address education and social services issues. So one day a few crumbs is enough, the next day a big loaf is not enough. Ever felt like you were listening to a schizophrenic?

    #1659
    Cathy Fitzhugh
    Participant

    Wow.
    Just watched Jean and everyone try their best in the Senate.
    Thank you all for your amazing everythings.
    (Gosh some of those questions were silly: emergency rooms?)

    It reminded me of so many things.
    Is there a way to re-watch it?
    I'd like to send it to a few people…
    (scissorhappy@shaw.ca)

    We all have to keep fighting.
    We just have to keep going.

    Just a reminder about "self care."
    We all also have to take care of ourselves.
    Get massages, take hot baths (once the water is clear,)
    buy yourself new slippers and a cozy sweater.

    If we can't stand stong and clear, we can't support our children.
    And once again, thank you Jean.

    I can't imagine Autism without you.

    Staying dry in Vancouver,
    Cathy

    #1660
    Jenn Ralph
    Member

    Hi all,
    Update from Day 3 in Ottawa:

    Great press conference, awesome rally! Lots of media and interviews and a large turnout. More on that later, however, we are busy preparing for today's senate committee meeting. But we need to first clarify an issue that has been brought to our attention.

    We understand that Mark Warawa's assistant has been contacting parents regarding a discussion Mark had with the 4 parents who were in attendance at the press conference, myself one of them.

    He was clearly confused about the difference between the university chair (s) that FEAT has been advocating for, and the research chair that was proposed in Tony Clement's announcement. Unfortunately, when that was clarified for him, he became angry, left the room, and did not attend the rally.

    Mark Warawa's position is consistent with the Conservative stance at this time, which is that this is a "provincial issue", this "is not within the federal gov's juristictional competency to achieve", and by Clement's own admission, the announcement does not include treatment money or initiatives.

    For any further inquiries about the actual discussion with him contact me at jennifer.r@shaw.ca or my cell phone.

    #1661
    Andrew Kavchak
    Participant

    There will be a webcast of today's hearings of the Standing Senate Committee on Social Affairs. One of the witnesses, Jean Lewis, is scheduled to appear on a panel. I believe her panel will begin at 12 noon Eastern Time (9am in Vancouver), but please don't quote me on the time because the first panel begins at 10:45 Eastern Time and I have no idea how much they may reshuffle the deck or the timing.

    Social Affairs, Science and Technology
    Thursday, November 23, 2006 10:45 am
    Location: Room 2, Victoria Building 140 Wellington Street
    (Webcast)
    Clerk: Josée Thérien (613) 990-6080

    Go to: http://www.parl.gc.ca/common/Committee_SenWebcast.asp?Language=E

    #1662
    Andrew Kavchak
    Participant

    House of Commons
    EDITED HANSARD • NUMBER 084

    CONTENTS

    Wednesday, November 22, 2006

    ORAL QUESTIONS

    Autism

    Mr. Blair Wilson (West Vancouver—Sunshine Coast—Sea to Sky Country, Lib.):

    Mr. Speaker, it is shameful the heartless minority Conservative government is paying lip service to parents and children affected by autism. Surely the minister does not believe that telling parents to go to a website makes up for the fact that his government has put up no new money for autism research, no new money for program support and no new money for autism development and treatment.

    The previous Liberal government invested $16.2 million which supported 32 separate products. Will the Minister of Health stop turning his back on families with autism, put his money where his mouth is, and cough up some new money to support families with autism today?

    Hon. Tony Clement (Minister of Health and Minister for the Federal Economic Development Initiative for Northern Ontario, CPC):

    Mr. Speaker, we know that this is an important public health issue, which is why I made my announcement yesterday on behalf of the Government of Canada on additional support for families and children facing ASD.

    I would only read the headline from the Autism Society of Canada website news release in reply, where the Autism Society of Canada welcomes the announcement from the federal Minister of Health in support of Canadians with autism spectrum disorders.

    We are working with the stakeholders. As importantly, we are working with the families and their children, which is quite frankly more than was done by that member's party when in government.

    (1500)

    #1663
    Dave Collyer
    Member

    Good link (to the Garth Turner (MP) website video). To echo what both the Honorable Peter Stoffer (MP) and Garth Turner(MP) suggest as a course of action… "make sure your voice is heard":

    1. Contact your MP. ( http://www.parl.gc.ca or Members of Parliament (enter your postal code) ) via email, phone call, snail mail or in person

    2. Ask them to support the Motion introduced by Andy Scott (MP)and Blair Wilson (MP)… and to support Bill C211 and Bill C304,

    3. Ask that the "New" Government of Canada include Autism under the Canada Health Act and to support the development of a National Strategy for Autism Spectrum Disorders.

    Dave.

    #1664
    Jenn Ralph
    Member

    ..another interview from the hill today – this one from MPTV – Garth Turner's blog. Go to:

    http://www.garth.ca

    scroll down to video of the day (autism).

    #1665
    Mike & Rachel Goetz
    Participant

    So we read Tony Clements announcement, and while it didn't offer much help, there was one interesting thing we noticed: the number of times the word "autism" was used in the same sentence as "health".

    * "We already support research on ASD through the Canadian Institutes of HEALTH Research"

    * "launch a consultation process on the feasability of developing an ASD surveillance program through the Public HEALTH Agency of Canada"

    * "Create a dedicated page on the HEALTH Canada website to guide the public to ASD information available through the Canadian HEALTH Network and other resources"

    * "Designate the HEALTH Policy Branch of HEALTH Canada as the ASD lead for actions related to ASD at the Federal HEALTH Portfolio level"

    There you have it – in an announcement that had six points, the word HEALTH is mentioned in four of them. And although the press release is disappointing, perhaps the message is starting to get through that autism is a health issue – not one that comes under education or social services – and now that Tony Clement has made this connection we can call him on it, both now and in the future.

    Rachel Goetz

    #1666
    Sam Yassine
    Member

    Hi Folks

    More media coverage

    http://www.allheadlinenews.com/articles/7005605216

    Autism Association Of Canada Demands Action On National Strategy

    November 22, 2006 3:59 p.m. EST

    Jacob Cherian – All Headline News Staff Writer
    Ottawa, Canada (AHN) – Tony Clement, the Health Minister of Canada is under fire from families of children with autism and related advocacy groups for not providing a strategy for laying out treatment resources equally across all of Canada's provinces.

    Sam Yassine, father of an autistic child and a Families for Early Autism Treatment advocacy group member, tells CanWest News Service, ''Parents across the board, they are tired of waiting," adding that, ''We need action now. Enough time wasted on raising autism awareness.''

    Clement, in response to the pressure, released a series of small steps intended to disseminate public information and help researchers studying the abnormality.

    Clement said in a news conference, ''Today's new initiatives will contribute to laying foundations to improve our understanding of autism and its prevalence."

    However, there is no agreement between the provincial and federal governments on how to deal with the condition or on what the standard treatment might be.

    Clement responded that the conservative government is "obliged to help unravel the mysteries of the disorder."

    But Yassine emphasizes that the government is slow to take action and that the children and their families are suffering as a result.

    In the meantime, the Autism Association suggests that the national government come up with strategies to strengthen resources and help professionals to ascertain early detection of autism.

    Yassine adds that it is also essential to develop "behavioral intervention programs" to help children and families affected with autism throughout the provinces.

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