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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 - 1,721 through 1,730 (of 1,741 total)
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  • #2500

    Isaac
    Participant

    There is a good piece in the Vancouver Sun today regarding the recent BC Supreme Court decision.

    It's available for download at http://featbc.org/downloads/Sun_07_28_00.pdf

    Isaac
    (Miki's Dad)

    #2499

    Deleted User
    Member

    Congratulations!

    Wow, I'm still in shock. I read my email yesterday and watched the evening news in disbelief. Its actually happened, the children and parents have won. And my thoughts turned to those of you who fought this battle. I can only imagine that it must have been a very difficult road, trying to maintain therapy schedules, family life and take your battle to court. I thought of all of you and wanted to say "thank you". Thank you for your strength and determination. Thank you for fighting for the children who can not fight for themselves. You have and will make a huge difference in the lives of our children.

    So I turn my thoughts now to what will happen next and anxiously await more news.

    I'm off to give my daughter a big hug and to share my joy with her.
    Michelle Karren

    #2498

    Isaac
    Participant

    Here is a press release issued today by the BC Liberal Official Opposition. The release is also available in Acrobat PDF format at http://featbc.org/downloads/release_07_28_00.pdf

    Full text of the BC Supreme Court decision is available on the FEAT BC server at http://featbc.org/downloads/decision.htm

    Isaac
    (Miki's Dad)

    __________________________________________________
    NEWS RELEASE
    BC LIBERAL OFFICIAL OPPOSITION

    For immediate release
    July 28, 2000

    Put Children First And Fund Autism Programs

    Richmond – Yesterday's court ruling is a victory for families of children with autism – the NDP government must honour it and immediately move
    to fund the early intervention programs that children with autism desperately need, said BC Liberal Children and Families Critic Linda Reid.

    "We've been calling on the government repeatedly to get its priorities right, recognize the crucial need for early intervention programs for
    children with autism and get on with funding it," said Reid. "Once again, British Columbian families were forced to go to court in order to have
    their concerns addressed. These families can't afford any more delays or inaction from the NDP like we saw on the secure care legislation.
    Minister Gretchen Mann Brewin must stop delaying and immediately undertake to put funding in place for these programs."

    "We've been telling the government for years that it has its priorities all wrong. Instead of providing treatment for children with autism, they've
    chosen to waste money on other things. It's time to put children's interests first."

    "We know from extensive behavioural and developmental research that early intervention programs are essential for young children with autism,
    and parents simply cannot afford the cost. In fact, families have been forced to move to Alberta to obtain the treatment they need. The
    government's recently announced pilot project for children with autism is far from adequate, and only came on the eve of a court action that
    finally forced the NDP to act."

    "This is an issue that many Opposition MLAs are deeply concerned about, and I'd like to particularly credit the hard work of Okanagan-Penticton
    MLA Rick Thorpe who has worked closely with families of children with autism to raise awareness of the need for funding. We applaud the
    parents and families who have sacrificed so much to finally force the government to address their concerns. It's time for the NDP to accept
    responsibility and act," Reid concluded.

    (end)

    Contact: Janis Robertson (250) 213-2888

    #2497

    For those of you in the Okanagan and interested:

    Jeremy and I will be on CHBC news tonight at 5 pm.

    Barbara Rodrigues

    #2496

    Hi Everyone:

    Just to let you know that Sabrina Freeman, the Director of FEAT of BC will be on CBC radio AM between 6-7 pm. tonight (that's Pacific Standard time) The topic will be the Supreme Court decision.

    Still smiling.
    Barbara

    #2495

    Hi Everyone:

    Just to let you know that Sabrina Freeman, the Director of FEAT of BC will be on CBC radio AM between 6-7 pm. tonight (that's Pacific Standard time)

    Still smiling.
    Barbara

    #2494

    David Chan
    Member

    just one word "Yippee"

    #2493

    Isaac
    Participant

    Hi everyone,

    Regarding the recent BC Supreme Court decision in favour of our kids, full text of Madame Justice Allan's "Reasons for Judgement" are now available on the web at the following address:

    http://www.courts.gov.bc.ca/jdb-txt/sc/00/11/s00-1142.htm

    Isaac
    (Mikis Dad)

    #2492

    Isaac
    Participant

    Here is a copy of the FEAT BC press release regarding the recent legal decision in BC Supreme Court. The release is also available in Acrobat PDF format at http://featbc.org/downloads/Judgment.pdf

    On behalf of everyone, a heartfelt thank you to Avery Raskin who worked well into the night to prepare and distribute this important release to all media.

    Isaac
    Miki's Dad

    __________________________________________________

    BC Government Violates Rights of Children with Autism
    BC Supreme Court Declares Denied Treatment is Medically Necessary

    The BC Government actively discriminates against children with autism:

    [132] “The petitioners are the victims of the government’s failure to accommodate them by failing to provide treatment to ameliorate their mental disability. That failure constitutes direct discrimination. Further, the petitioner’ disadvantaged position stems from the government’s failure to provide effective health treatment to them…”

    The BC Government violates the Canadian Constitutional rights of children with autism as guaranteed in the Charter of Rights:

    [156] “The Crown discriminates against the petitioners contrary to s. 15(1) by failing to accommodate their disadvantaged position by providing effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

    The BC Government is obligated to provide treatment for children with autism — treatment they have steadfastly refused to provide and still refuse to provide:

    [139] “I find that the petitioners have established that their s. 15 rights have been infringed…That unequal treatment, which is based on the enumerated ground of mental disability, is discriminatory. Here the only accommodation possible is funding for effective treatment.”

    These are the facts as declared late yesterday in BC Supreme Court, in the 66-page judgment of the Honourable Madam Justice Allan, in the case of four children with autism and their parents versus the BC Government:

    [102] “On the basis of expert evidence introduced by both parties, I find that early intensive behavioural treatment is a medically necessary service.”

    For the parents of these and countless other children with this tragic condition, the battle is for the only scientifically proven medical treatment in existence, Applied Behavioral Analysis (ABA) as developed by Dr. Ivar Lovaas at the University of California at Los Angeles. Decades of research data has proven the effectiveness of Lovaas-ABA in treating children with autism, data the BC Government chose to ignore in refusing any effective treatment for these afflicted children.

    [66] “It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown’s own expert witnesses.”

    [52] “The expert witnesses agree that the most effective behavioural therapies are those based on principles of ABA. There are no effective competing treatments.”
    [151] “The exclusion of effective treatment for autistic children undermines the primary objective of the medicare legislation, which is to provide universal health care.”

    The case against the Government began two years ago. It was started by a group of parents long frustrated by the burden of not only trying to help their suffering children, but doubly hampered by a bureaucracy that not only would not help them, but actively made getting needed treatment for their children even more difficult.

    [108] “Given that autism is defined in DSM-IV as a mental disorder, it is difficult to understand the reluctance of the government to provide ABA treatment that has been widely endorsed by medical practitioners and academics throughout the world.”

    One of the parents involved in the case, and also an expert witness for the petitioners, is Dr. Sabrina Freeman. The head of the volunteer parents’ group Families for Early Autism Treatment of BC said today, “We are thrilled that the Supreme Court of BC has placed children with autism on an equal footing with other children with medical disabilities. So many children whose parents could never afford proper medically necessary treatment will get the help they need thanks to Justice Allan.”

    [127] “The absence of treatment programmes for autistic children must consciously or unconsciously be based on the premise that one cannot effectively treat autistic children. The extensive evidence in this case shows that assumption to be a misconceived stereotype. The stigma attached to mental illness is historical and widespread. Only effective treatment can reduce the marginalization of autistic children and their exclusion from the mainstream of society.”

    In the 161-paragraph judgment, Justice Allan rejected many of the Crown’s arguments against providing effective treatment for children with autism, including the Government’s most energetic defence, that they cannot afford to do it:

    [147] – “In a broad sense, it is apparent that the costs incurred in paying for effective treatment of autism may well be offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization.”

    Justice Allan also rejected the Government stance autistic children receive equality of medical care since they can see a doctor for any problem other than their autism:

    [134] “…the Crown submits that if an autistic child gets cancer, he or she will receive treatment for cancer. That justification is misguided as well as unfortunate. It ignores the fact that autism is a medical disability just as cancer is and that both require treatment.”

    Still to be decided by Justice Allan are the extent of damages and remedies the Government must make to right the wrongs committed against children with autism. For more information or interviews, please contact Dr. Sabrina Freeman at FEAT of BC — 534-6956.
    Highlights of the Judgment of BC Supreme Court Justice Allan
    in the case of Auton et al v. Attorney General of British Columbia and the Medical Services Commission of British Columbia:

    (Please note: Quotes are verbatim from the Court’s judgment; abbreviations are expanded following each quotation in parentheses).

    P.24 [48] “The BCHOTA Report exhibits an obvious bias towards supporting the Crown’s position in this litigation. That detracts significantly from its usefulness.”
    (BCHOTA — BC Office of Health Technology Assessment at UBC)

    P.25 [52] “The expert witnesses agree that the most effective behavioural therapies are those based on principles of ABA. There are no effective competing treatments.”
    (ABA — Applied Behavioural Analysis)

    P.30 [66] “It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown’s own expert witnesses.”

    P.42 [102] “On the basis of expert evidence introduced by both parties, I find that early intensive behavioural treatment is a medically necessary service.”

    P.44 [108] “Given that autism is defined in DSM-IV as a mental disorder, it is difficult to understand the reluctance of the government to provide ABA treatment that has been widely endorsed by medical practitioners and academics throughout the world.”
    (DSM-IV — Diagnostic and Statistical Manual of Mental Disorders, 4th Edition)

    P.52 [126] “In failing to make appropriate accommodation for their health care needs, the Crown has discriminated against them. It is not the medicare legislation that is discriminatory or defective but the Crown’s overly narrow interpretation of it.”

    P.52 [127] “The absence of treatment programmes for autistic children must consciously or unconsciously be based on the premise that one cannot effectively treat autistic children. The extensive evidence in this case shows that assumption to be a misconceived stereotype. The stigma attached to mental illness is historical and widespread. Only effective treatment can reduce the marginalization of autistic children and their exclusion from the mainstream of society.”

    P.54 [132] “The petitioners are the victims of the government’s failure to accommodate them by failing to provide treatment to ameliorate their mental disability. That failure constitutes direct discrimination. Further, the petitioners’ disadvantaged position stems from the government’s failure to provide effective health treatment to them…”

    P.55 [134] “…the Crown submits that if an autistic child gets cancer, he or she will receive treatment for cancer. That justification is misguided as well as unfortunate. It ignores the fact that autism is a medical disability just as cancer is and that both require treatment.”

    P.57 [139] “I find that the petitioners have established that their s. 15 rights have been infringed…That unequal treatment, which is based on the enumerated ground of mental disability, is discriminatory. Here the only accommodation possible is funding for effective treatment.”
    (s. 15 — Section 15 of the Charter of Rights)

    P.61 [147] “In a broad sense, it is apparent that the costs incurred in paying for effective treatment of autism may well be offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization.”

    P.62 [151] “The exclusion of effective treatment for autistic children undermines the primary objective of the medicare legislation, which is to provide universal health care.”

    P.63 [153] “The inability of the petitioners to access that treatment is primarily an issue of health care, not education or social services.”

    P.63 [154] “The Crown, and specifically the Ministry of Health, provides no effective treatment for the medical disability of autism…It is for the Crown to determine the measures it will take to comply with its constitutional obligations.”

    P.64 [156] “The Crown discriminates against the petitioners contrary to s. 15(1) by failing to accommodate their disadvantaged position by providing effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

    P.64 [158] “The infant petitioners are entitled to a declaration that the Crown has violated their section 15(1) Charter rights.”

    #2491

    Sabrina Freeman
    Participant

    Court Case Update

    This afternoon Justice Allen handed down her decision in our case against the Government of British Columbia. The decision is in favour of our children and their families! More details will be available soon.

    Regards,

    Sabrina
    (Miki's mom)

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