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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 - 351 through 360 (of 2,008 total)
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  • #2275
    Dione Costanzo
    Participant

    SEP 17, 7:00PM: A Parents Guide to Effective Advocacy with School and Government Agencies
    Dr. Sherri Brown, Creekside Community Recreation Centre in Vancouver

    Sherri Brown is a Parent of a young child with autism. She is through doctoral training and professional experience, a health policy and politics researcher, lecturer, and consultant. She is an academic-turned-advocate mom who has a wealth of knowledge to share regarding advocacy issues. Please join us for this informative presentation.

    Find a complete listing of our events on our website:

    http://www.autismsupportbc.ca

    #2276
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, here we go again…another family puts their home on the market and move into a one-bedroom apartment with a card table for a kitchen table…to pay $5,000 a month for ABA/IBI.

    http://ottawacitizen.com/news/local-news/egan-price-of-autism-sell-the-house-move-family-of-5-into-1-bedroom

    The Harper government has created various "tax sheltered" investment vehicles, increased their contribution limits, introduced tax credits for different things, and more recently made the baby bonus universal again. For some reason, none of that seems to have helped the family much…

    #2277
    Mike & Jean
    Participant

    Important announcement for parents and supporters!

    Medicare for Autism Now's "One in 68" Campaign training sessions originally scheduled for Aug. 18th and 19th in Surrey and Vancouver are cancelled and are now going to be one session and available to everyone across Canada via webinar on Wednesday, August 19th from 7:00 pm to 9:00 pm PDT. Parents and supporters living anywhere in Canada can join us live to learn how to engage their local candidates to advance policy change which will make science-based autism treatment (ABA/IBI) universally accessible and covered under Medicare. It's as easy as following the instructions in this link: https://attendee.gotowebinar.com/regist…/4708086068839319042

    Can't join us live? Watch our facebook page at the end of next week to see where you can download the recorded session.
    We look forward to meeting you and taking your questions on-line next Wednesday evening. Please share this information with all your parent/supporter groups.

    #2278
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, something we have all known for a long time and which the "specialists" are finally acknowledging….definitions, criteria and expertise in diagnosis matter!

    http://www.ctvnews.ca/health/first-direct-evidence-that-autism-is-not-rising-study-1.2482867

    Over the years more kids have been diagnosed with autism. Whether it is because of the actual prevalence rate of the disorder increasing, or different criteria being applied in diagnosis, the fact is that the current prevalence rate is 1 in 68. If that ain't an epidemic, then what is it? This is an alarming figure. However, the way the article title is presented ("rates not rising", etc.) one would get the impression that we can all exhale and relax. I don't think so.

    #2279
    Mike & Jean
    Participant

    News Release
    June 25, 2015

    For Immediate Release

    Vancouver, BC – Today, the Medicare for autism Now! Society (“MFAN”), a non-partisan, not-for-profit, all volunteer organization, announced the launch of its nation-wide One in 68 campaign. “We will be holding a Campaign Kick-off this Saturday, June 27th, at Douglas College, New Westminster, between 10:00 am and 2:00 pm,” said MFAN director and campaign manager, Dr. Sherri Brown, “It will outline the rationale for our initiative and lay-out our action and advocacy agenda leading to the federal election on October 19th, less than four months away.”

    The MFAN campaign takes its name from the fact that, currently in North America, one in 68 children are being diagnosed with Autism Spectrum Disorder (ASD). “There is a national epidemic of staggering proportion happening in Canada,” said MFAN director, Jean Lewis, “And, unlike the situation in the United States, our federal government has to date failed miserably to demonstrate long overdue leadership in addressing this major and growing national health care challenge.”

    The One in 68 campaign will seek firm commitments from those who wish to hold elected office in Ottawa to vote in favour of necessary changes to the Canada Health Act so that persons living with ASD across our country will have science-based treatment for their core health need covered by Medicare. MFAN intends to focus its efforts on a limited number of highly competitive electoral districts in various parts of Canada. In Metro Vancouver, these include: Burnaby North-Seymour, Coquitlam-Port Coquitlam, Delta, Surrey Centre, Surrey-Newton, Vancouver Centre and Vancouver Quadra.

    -30-

    For further information, contact Jean Lewis at 604-290-5737 or at jean.lewis@telus.net

    #2280
    Andrew Kavchak
    Participant

    Hi Folks,

    And in the “what will they think of next?” category, we have the Australian contribution…a cage.

    http://www.canberratimes.com.au/act-news/autism-cage-inquiry-stalled-20150616-ghpefv.html

    #2281
    Mike & Jean
    Participant

    Today, the Medicare for autism Now! Society (“MFAN”) announced that Harold Doherty, of Fredericton, New Brunswick, has joined its board of directors. “We have had a long and valued association with Harold,” said MFAN director, David Marley, “We are extremely pleased that an individual with his skills and passionate commitment to the cause of helping persons living with ASD and their families has become a director of our organization.”

    Harold, a labour lawyer, became an autism treatment advocate shortly after his second son, Conor, was diagnosed with severe autism. He has published an internationally-read, award-winning blog, “Facing autism in NB”, for over a decade. Together with others, Harold successfully pushed for a provincial early intervention programme, which includes the provision of autism specific, ABA therapy training for education aides and resource teachers.

    He has worked extensively on the promotion of national Medicare coverage for science-based treatment of autism, including helping MFAN in its last federal election initiative. Harold’s close work with members of Parliament resulted in the passage of a private member’s bill calling for a National Autism Strategy.

    “I look forward to my work as a director of MFAN as our country approaches an important federal election,” said Mr. Doherty, “We have a clear focus on securing during the campaign an unqualified commitment from one or more national political parties, as well as individual candidates, to vote for the provision of Medicare coverage for evidence-based autism treatment.”

    #2282
    Bev Sharpe
    Member

    11 years ago today, November 19, 2004 the Auton decision was rendered by the Supreme Court of Canada.

    This judgment upheld the findings of fact from the BC Supreme Court that ABA Treatment was medically-necessary. The judgement failed our children by not ordering the provinces to pay for this treatment.
    The serious flaw in the Supreme Court of Canada judgement was that this court, the highest court in the land, did not wanted to force the provinces how to spend their health care dollars.

    What Auton did was put a spotlight on the inhumane exclusion of our autistic children from Medicare.

    What can you do?

    Continue your child’s ABA treatment program – it is the single treatment with the science , data and efficacy behind it – it works.

    Keep informed. Sign up for the free newsletter from Association for Science in Autism Treatment at:
    http://www.asatonline.org/signuphttp://www.asatonline.org/signup

    Join Medicare for Autism Now! Their website: medicareforautismnow.org
    Your autistic child is a Canadian citizen who is worthy of their core treatment need for ABA and worthy of being included in Medicare.

    Get active with Civil Rights Now! People living with a disability in British Columbia do not have the legal rights and protections they believe that they have. Anyone and everyone, as a result of an accident, an illness or merely by getting older can become vulnerable. And that’s why everyone needs to get involved in this campaign. Their website is: civilrightsnow.ca

    Read and understand the Auton and Hewko decisions. These decisions outline critical facts which you can use to advocate for your children’s treatment both at home and in school.

    Excellent blog to read: Autism Pundit by Dr. Sabrina Freeman: autismpundit.com

    Thank you to Dr. Sabrina Freeman for founding Families for Early Autism Treatment and for her tireless work on both the Auton and Hewko cases.
    Thank you to each and every family who courageously provides an ABA treatment program for their child.

    #2283
    Andrew Kavchak
    Participant

    Hi Folks,

    A couple of years ago there were a series of stories in the media suggesting that children of "older men" are more at risk of autism than children of relatively younger men (compared to the "older men" types).

    Well, that had me worried. My dad was no spring chicken when I was born, and I was past my "best before" date for playing as the goalie in my local men's recreational soccer team when my younger son was born. Did I mismanage the timing of my love, marriage and reproductive activities and end up involuntarily sacrificing my son's neurological well-being?

    Now, several years later, I am sorry to say that it appears my feeling of guilt may spread to some ladies, both young and old, as the result of the latest news reported by CTV.

    Yes, newborns are at greater risk of autism not only if the father is older, but if the mother is also somewhat older. The risk of autism is also higher if the mother is in her teens.

    http://www.ctvnews.ca/health/autism-risk-higher-among-kids-of-both-older-parents-and-teen-moms-study-finds-1.2413601

    I don't know about you, but I'm increasingly under the impression that more and more categories of parents are being "looped in" to the red flag list of people that are at higher risk of generating offspring with autism.

    And what will the next category be?

    Perhaps these studies will lead to some future medical guidance suggesting best age-sex combinations for reproduction purposes with lowest risk of autism. So far it seems that teenage males and ladies in their mid-twenties are in the clear.

    I can hardly wait for tomorrow's news so that we can get to the bottom of this.

    #2284
    Andrew Kavchak
    Participant

    Hi Folks,

    Media stories about autism are interesting to observe. Some news stories are positive and provide reasons to be hopeful and optimistic. Other stories provoke sadness. And some stories just make you wonder. Today, there are three stories in the English "Daily Mail" online which generate more "awareness" of autism in one way or another…

    In this article, it appears that some new vessels were discovered that may filter and transport some sort of fluid from the brain and this may help treat autism.

    http://www.dailymail.co.uk/health/article-3112055/Landmark-discovery-brain-scientists-rewriting-textbooks-help-treat-conditions-autism-Alzheimer-s.html

    In this article, the message is that people with autism are "not impaired" but have "supercharged" brains.

    http://www.dailymail.co.uk/health/article-3110872/People-autism-supercharged-brains-condition-sensitive-world-not-impaired.html

    Finally, in this article, we can all breathe a sigh of relief as it turns out that one child does not have autism as his mother suspected. The child's temper tantrums were not a symptom of his autism after all. It turns out that the family pooch kept taking his pillow at night and he was not getting enough sleep or something.

    http://www.dailymail.co.uk/femail/article-3109623/Mother-thought-child-autism-bad-behaviour-discovers-real-reason-sleep-deprivation-caused-family-DOG-stealing-pillow.html

    I can hardly wait to read tomorrow's stories.

Viewing 10 replies - 351 through 360 (of 2,008 total)
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