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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 - 1,191 through 1,200 (of 2,008 total)
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  • #1290
    Nancy Walton
    Participant

    We just had an AWESOME, media covered, meeting with Mark Warawa, MP for Langley BC. Mark received over 1100 signatures from my son Casey. He listened to each family there tell their story. He said that he would table a petition for each 25 signatures!!!

    Thank you Mark Warawa, for listening to us with your heart. Thanks to your assistants who helped put this together and made us feel so welcome there.

    And a big thanks to Loriane and Tash for organizing this event and for collecting SO MANY signatures!!! Big congratulations to you.

    Bless you all,

    Nancy Walton

    #1291
    Isaac
    Participant

    Adding to Jim Mulick's important "cost benefit analysis," FEAT of BC is now making available Doug Hildebrand's Lovaas-ABA cost benefit analysis, done for B.C. families in the landmark Auton case of 2000. This is a very detailed, well done study from a highly regarded economic consulting company that specializes in cost benefit analyses — Columbia Pacific Consulting. The Hildebrand cost benefit analysis on ABA is being made public so that all children fighting for the legal right to effective, science-based autism treatment can benefit from this important research.

    Although the Auton case for ABA funding regrettably was overturned on a technicality by the Supreme Court of Canada in November, 2004, important finding's of fact from the lower courts were not: that Lovaas-ABA is medically necessary, uniquely effective and of long term fiscal benefit to society.

    The detailed economic study done by Doug Hildebrand shows that intensive behavioral treatment along the Lovaas model, saves society between 1 to 2 million dollars over the life of the person — and Hildebrand's numbers are deliberately skewed to the conservative side.

    Doug Hildebrand's cost benefit analysis should be in every ABA lawyer's kit
    bag. It's available for download from the FEAT BC server at this address:

    –> https://featbc.org/downloads/Hildebrand_Lovaas_ABA.pdf

    Please send any questions or comments to info@featbc.org rather than Columbia Pacific Consulting.

    Thank you!

    Isaac (Miki's Dad)
    FEAT of BC

    #1292

    Note to Alan,

    Please email me directly. I will put you in touch with a Petition Coordinator in your area and we can figure out the best thing to do with the signatures you have collected. Great job by the way, 281 signatures is very impressive !

    Thanks,
    Justin HImmelright

    #1293

    To all those out there collecting signatures for the petition…..Please go to the http://www.canadaautism.com web pag and check the FAQs if you have questions. If your question is not among the FAQs, there is an option to submit your FAQ to the web page. Your question and the answer will then be permanently available to anyone who is collecting signatures.

    The http://www.canadaautism.com website is specifically designed for the purpose of this petition. It has many features including connections to others in your area who are collecting sigantures, downloadable lobbying tools such as email distribution lists, display and links to all MPs who have and are helping us etc. Please take a minute tot visit the site.

    Thanks,
    Justin Himmelright

    #1294

    Just a quick question regarding the petition….

    We have amassed 281 signatures, but since they were collected at work (downtown) they are not from one riding. They look like a cross section of the Lower Mainland. Didn't think 'til after the fact to get differnt sheets for different ridings.

    Is anyone collecting these type of petitions (for one mass collection) or is there a specific MP who we should take them to. One who anyone has gotten a favorable response from…..any help would be great.

    Thanks

    Alan

    #1295
    Andrew Kavchak
    Participant

    Hi Folks!
    Scott Reid, MP, has issued a press release regarding the public opinion poll on autism. Let's thank him for his support and encourage other MPs to do the same and more!
    Mr. Reid may be reached at: reids@parl.gc.ca and scottreid@on.aibn.com.
    Andrew (Ottawa)

    Reid responds to Ipsos-Reid poll on autism treatment

    For Immediate Release December 20, 2004

    REID CONTINUES TO SHOW SUPPORT FOR THE FAMILIES OF AUTISTIC CHILDREN

    CARLETON PLACE – Scott Reid, MP for Lanark-Frontenac-Lennox & Addington
    commented on the release of the Ipsos-Reid poll released earlier today: 84%
    of Canadians believe that treatment for Autism should be included in
    Medicare.

    According to today’s Ipsos-Reid poll, 84% of Canadians said that while not
    obligated to cover this healthcare cost, their province should do so
    anyways. The cost of IBT therapy can run up to $60,000 annually for the
    family of an autistic child, and this therapy can save the health care
    system and taxpayers an average of $1 to $2 million over the lifetime of an
    autistic person.

    “The federal government should encourage provinces to start covering this
    treatment,” Reid stated, “In Ontario, there is currently only room in the
    budget for around 100 children to receive the treatment each year, the
    others either have to do without or burden their families with a very hefty
    medical bill.”

    The Supreme Court of Canada recently found that provinces are not legally
    responsible for covering Intensive Behavioural Treatment (IBT), under the
    Canada Heath Act. The decision also stated that provinces can choose to
    cover the therapy out of their own health budget.

    Last month, to encourage the provinces to take this action, Scott Reid
    tabled several petitions calling on the government to include IBT therapy in
    the Canada Health Act.

    In an unprecedented feat, on November 26, of this year, Scott Reid sought
    and obtained unanimous consent in the House of Commons to submit an online
    petition containing over 2,500 additional signatures. The House agreed to
    the submission of those 2,500 names. The online petition continues to grow
    by approximately 100 signatures per day.

    -30-

    For more information or to speak with Mr. Reid, please call (613) 257-8130.

    For full tabular results, please visit the Ipsos-Reid website at
    http://www.ipsos.ca.
    News Releases are available at: http://www.ipsos-na.com/news/

    #1296
    Isaac
    Participant

    A PDF version of the Ipsos-Reid/Families for Early Autism Treatment of BC autism poll is available at:
    https://featbc.org/downloads/Ipsos_12_20_04.pdf

    **********************************************
    Public Release Date: – December 20, 2004 – 9:30 a.m. (EST)
    CANADIANS BACK AUTISM FUNDING FROM PROVINCES

    Full Majority (84%) Believe Their Provincial Healthcare Program Should Cover The Costs Of The Intensive Behavioural Treatment For Children Suffering From Autism Despite Supreme Court Decision

    Toronto, ON – A new Ipsos-Reid survey conducted on behalf of Families for Early Autism Treatment of British Columbia finds nine in ten (89%) Canadians believe that their provincial healthcare program should cover the costs of the Intensive Behavioural Treatment, which has scientifically been proven, to effectively treat children who suffer from autism.
    Once informed that there was a recent decision by The Supreme Court of Canada that provinces are not legally responsible for covering the Intensive Behavioural Treatment, which costs a family approximately $60,000 a year and would save taxpayers 1-2 million dollars over the lifetime of an autistic child, and that while their province is not legally bound under the Canada Health Act to provide funding for this service they still can choose to do so out of their health budget, 84% of Canadians said that while not obligated to cover this healthcare cost, their province should do so anyways.
    These are the findings of an Ipsos-Reid/Families for Early Autism Treatment of British Columbia poll conducted from December 14th to December 16th, 2004. For the survey, a representative randomly selected sample of 1001 adult Canadians was interviewed by telephone. With a sample of this size, the results are considered accurate to within ±3.1 percentage points, 19 times out of 20, of what they would have been had the entire adult Canadian population been polled. The margin of error will be larger within regions and for other sub-groupings of the survey population. These data were weighted to ensure the sample's regional and age/sex composition reflects that of the actual Canadian population according to the 2001 Census data.
    When asked whether or not they "believe that children who suffer from autism should be covered by their provincial healthcare program to receive an Intensive Behavioural Treatment, which has scientifically been proven, to effectively treat autism," 89% of Canadians say "yes." Just 6% say "no" and another 6% are unsure.
    * Eastern Canadians are more likely than their neighbours to the west to believe that their provincial healthcare program should cover the costs of the Intensive Behavioural Treatment: 95% of Atlantic Canadians, 90% of Quebecers, and 91% of Ontarians say "yes" compared to 85% of residents of British Columbia, 82% of residents of Alberta, and 80% of residents of Saskatchewan/Manitoba.
    Canadians were then read the following statement, "now, as you may know, there was a recent decision by The Supreme Court which indicated that provinces are not legally responsible for covering the Intensive Behavioural Treatment for children with autism. This means that while your province is not legally bound under the Canada Health Act to provide funding for this service they still can choose to do so out of their health budget. It is estimated that The Intensive Behavioural Treatment, a scientifically proven effective treatment for children with autism, which costs a family approximately $60,000 a year would save taxpayers 1-2 million dollars over the lifetime of an autistic child." When asked whether or not they think that while not obligated to cover this healthcare cost, their province should do so anyways, 84% said "yes." One in ten (9%) said "no" and the remaining 8% didn't know whether or not they think that while not obligated to cover this healthcare cost, their province should do so anyways.
    * Canadians 18-54 years of age are more likely than their elders to think that while not obligated to cover the cost of the Intensive Behavioural Treatment for children with autism, their province should do so anyways (87% vs. 77%).
    -30-
    For more information on this news release, please contact:
    John Wright
    Senior Vice President
    Ipsos-Reid
    Public Affairs
    (416) 324-2900

    Sabrina Freeman, Ph.D.
    Executive Director
    Families for Early Autism Treatment of BC
    (604) 534-6956

    For full tabular results, please visit our website at http://www.ipsos.ca. News Releases are available at: http://www.ipsos-na.com/news/

    **********************************************

    #1297

    A National poll conducted by Ipsos-Reid finds that 84% of Canadians want treatment for autism to be funded by the public health care system.

    You can find a copy of this poll at http://www.canadaautism.com/Default.aspx?tabid=50

    This morning that poll was send out to every federal MP, every BC MLA and every Ontario MPP. It was also sent to every newspaper in Ontario and BC.

    #1298
    Nancy Walton
    Participant

    Petitioners:

    On the new website http://www.canadaautism.com you will be able to now register your signatures and the MP you sent them in to. If you have already sent your number in to me, it will be put into the data base, you do not need to enter it.

    Some people have written to me and said they were gathering signatures but have not told me how many. I have not yet entered you into the data base. You may register your signatures on the web site. For a while, I'll be double checking what comes through the web site to make sure there aren't any double registrations. So if you are not sure if you have registered with me, do so on the web site and I'll check it.

    Easy to remember the web site: http://www.canadaautism.com. I tell everyone it has two a's in the middle to help remember it.

    Thanks again

    Nancy

    #1299
    Nancy Walton
    Participant

    Hi Colleen, Susan and anyone else collecting signatures. First of all, thanks for your efforts.

    It is a good idea to put a cover letter explaining your own situation, so there is a personal touch. You may also mention that the MP should get in touch with MP's Scott Reid and Stephen Fletcher, as they are well informed about the petition and can answer any questions. And thirdly, mention that we have a web site they can check out: http://www.canadaautism.com. (For that matter, all feat readers can check out the web site….and a big thanks to Justin Himmelright for getting it up and running).

    Right now the MP's are at home until February. So I think it is a great idea to bring the petition into the local office and get to know the assistants and let them get to know you. Even better if you can get a meeting directly with the MP. If you want back up, put a post that you have a meeting and one of us will join you.

    If you can't go into the office, there is usually an address for the MP's office in the phone book. The address at the bottom of the petition is in Ottawa and it will eventually get back to the MP, but may get delayed.

    Nancy Walton

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