This topic contains 1,786 replies, has 143 voices, and was last updated by  Andrew Kavchak 13 hours, 47 minutes ago.

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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 - 1,711 through 1,720 (of 1,786 total)
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  • #2555

    Sabrina Freeman
    Participant

    I'd like to respond to Andy Danylou's post suggesting FEAT BC is comprised of “litigious zealots”, but first, I'd just like to comment on how great it is to have this forum for exchange of opinions, no matter how divergent those views may be.
    ______________________________________
    Andre Danyliu wrote:
    >
    > Hello
    >
    > Barbara has a good point.
    >
    > We should ask to appear before the liberal caucus to provide them with
    > facts about Autism and establish lines of communication so they don't
    > see us as litigious zealots the way the NDP obviously do.
    > We need to be politely firm; state our case and work with them. Perhaps
    > a task force to implement that which the courts and common sense
    > dictate?.
    >
    > I'm prepared to help in this effort if there are others who agree.
    ______________________________________

    Andy seems to insinuate that FEAT BC hasn't put enough effort into opening lines of “communication” with the NDP government, and that parents who brought this lawsuit are trigger happy and did not exhaust all options before firing the legal bullet.

    A closer look at the record indicates the label of “litigious zealots” would be a grossly inaccurate characterization of the families who brought on this legal action. Sincere efforts at working with government have spanned many years prior to the court case, both on the part of FEAT BC and the hundreds of families who individually have “communicated” with unresponsive civil servants and government Ministers.

    Over several years before the writ was issued …
    a. A detailed FEAT BC information packet was HAND delivered to Minister Joy MacPhail outlining urgent policy reforms required in autism treatment in 1996. Our analysis and recommendations were ignored.

    b. Detailed FEAT information briefs were sent to EVERY member of government including the Deputy Minister of MCF, Ministers of Health, Children and Families, Premier Glen Clark, and senior level civil servants. Our analysis and recommendations were ignored.

    c. A FEAT BC delegation went to Victoria carrying an 8200 signature petition of concerned British Columbians asking that children with autism be included in Medicare — it was presented by a Liberal MLA to the government on the legislature floor. Government’s response? A shallow speech from a back-bench NDP MLA essentially stating Lovaas Treatment is a gold plated American treatment and in these times of fiscal problems, government can’t afford it.

    The same 8200 signature petition was hand delivered to the Minister of Health, Penny Priddy in her office in the parliament buildings. The petition and our legitimate grievance were ignored. The “communication” went nowhere.

    The response of the Minister for Children and Families to the petition? She dodged responsibility: “that’s something that the Minister of Health would have to look at”. The Minister of Health pointed fingers at the Minister of Education. The CBC TV interview can be seen at the web site below:

    http://www.featbc.org/files/media/video/CBCNEWS_06_01_98.ram

    d. We engaged the Minister of Children and Families of the day, Lois Boon, in direct debate in parliament during budget estimates, through one of our FEAT members’ MLAs — Rick Thorpe. Not surprisingly, no government policy change resulted — our children's treatment needs were still ignored.

    e. Dozens of letters from our grassroots membership, all produced in court affidavits, were written to high levels of government pleading for help to fund their treatment programs — none was forthcoming. Years of patronizing, empty, boilerplate responses from intransigent, unconcerned bureaucrats and politicians is all that our families received.

    f. A direct appeal was made to Health Minister Joy MacPhail on behalf of a FEAT representative by Federal M.P. John Reynolds. The government's response was that Autism is not a Health issue nor a Ministry of Health responsibility. She passed us back to the Children’s Ministry and expressed no government inclination to co-operate regarding our legitimate grievance.

    When did we start to see ANY Government attention paid to autism at all?

    Well, it started after FEAT BC helped expose the exodus of parents to Alberta (The BCTV story “Leaving BC for Health Care” http://www.featbc.org/files/media/video/BCTVNEWS_11_26_97.ram). Shortly after the story, government announced it would convene an Autism Workshop “to guide and direct policy”. The workshop result? A decision to create an Autism Action Plan. Result of the Action Plan? An MCF booklet on its “services” and how to access them … and a commitment to conduct further planning and reviews.

    After years of government inaction, and parents being rebuffed by intransigent bureaucrats, a writ was issued in BC Supreme Court. Seventy-Two hours before the court case was to start, the Ministry for Children and Families announced an Autism Pilot Project. Coincidence? Was it a genuine effort to help kids with autism or simply an attempt to buy an argument in court i.e. “we need to show the judge government really DOES have something other than baby-sitting services or we’re toast”. Regardless, it appears as though parents being “litigious” is what spurred SOME kind of government action more substantial than the Action Plan’s MCF booklet on services.

    The Pilot Project was not allowed in the court case because the Deputy Minister of MCF refused to go on the stand for cross examination. We can speculate as to what he was afraid of.

    So what did government do next? After losing the July 2000 court ruling, they had a neat idea: “why don’t we take the old Pilot Project, rename it and get it introduced in court for the November hearings on remedy for the constitutional violation? Let’s call it something impressive like the Provincial Center for Autism and Related Disorders — the P-CARD. Let’s tell the judge the new autism program will do what she said we need to do, provide “Early Intensive Behavioural Intervention”. Yah, that sounds good. Let’s put that on the cover and run with it”.

    The P-CARD leaves 2 out 3 three kids under 6 out of the program — even by end of 2002. It leaves 100% of kids over 6 out — permanently. It has no components of genuine autism treatment. It only accepts a government diagnosis — your pediatrician’s diagnosis is not valid. But we did “galvanize” the government to do something — other than the booklet of course.

    Rather than being unfairly characterized as litigious zealots, I would say we are a movement for social justice — I am proud of that. We are defending the constitutional rights of our children.

    Our very small numbers mean we have political power that approaches zero, especially against a stubborn, intransigent government and a vindictive bureaucracy.

    It may not surprise some of you that the Supreme Court of Canada has already recognized the unfortunate situation where a bureaucracy violates the rights of the disabled. The court states, “In my opinion, groups that have historically been the target of discrimination cannot be expected to wait patiently for the protection of their human dignity and equal rights while governments move toward reform one step at a time. If the infringement of the rights and freedoms of these groups is permitted to persist while governments fail to pursue equality diligently, then the guarantees of the Charter will be reduced to little more than empty words.” Iacobucci, Vriend v. Alberta.

    In our case, we have taken a virtually powerless, marginalized minority of disabled children before the courts so as to bestow upon them the same rights the majority enjoys to publicly funded health care.

    Going to court was a last resort, not the precipitous act of hot-headed “litigious zealots”. Do we want to work with government? Absolutely. But we have no partner who wants to work in good faith. What we have now is a government trying to pass off a hopelessly flawed pilot project as fulfillment of what the court has directed.

    We hope a change in government will improve things for our children; however, their constitutional rights — firmly declared in court — must not fall victim to the vagaries of BC’s polarized politics. Governments come and go and so too their policies. Our children’s rights are too important. Their right to health care must be entrenched to ensure that the words of Justice Emmett Hall are not empty: "Our proudest achievement in the well-being of Canadians has been in asserting that illness is burden enough in itself. Financial ruin must not compound it. That is why Medicare has been called a sacred trust and we must not allow that trust to be betrayed." Justice Emmett Hall.

    I quite agree with Andy Danylou that all FEAT members should visit and speak to as many Liberal MLAs as possible. We have already met with key Liberals on several occasions and have found a receptive ear. My feeling is that the more Liberals who truly understand the injustice and are touched by parents of children with autism, or those children themselves, the more quickly they will rectify the discriminatory, second class status imposed by government on children with autism. Until our children's treatment is covered by the health care system, the fight for their constitutional rights will continue.

    Just my two cents.

    Sabrina

    #2554

    FEAT BC Admin
    Keymaster

    MESSAGE FORWARD FROM: Andre Danyliu, andre_danyliu@telus.net

    _________________________________________________

    Hello

    Barbara has a good point.

    We should ask to appear before the liberal caucus to provide them with
    facts about Autism and establish lines of communication so they don't
    see us as litigious zealots the way the NDP obviously do.
    We need to be politely firm; state our case and work with them. Perhaps
    a task force to implement that which the courts and common sense
    dictate?.

    I'm prepared to help in this effort if there are others who agree.

    FeatBC Discussion Board wrote:

    > ————————————————————
    > FeatBC Discussion Board: Room Three: Discussions about
    > Government Topics
    > ————————————————————
    >
    > By Barbara Rodrigues (Rodrigues) on Wednesday, February 14,
    > 2001 – 12:48 pm:
    >
    > Hi Everyone:
    >
    > I was wondering what thoughts everyone has on the upcoming
    > election. Does anyone think a change in Government will
    > help our kids and push through individualized funding for
    > proper 'Lovaas' ABA programs and not these great little
    > 'eclectic' programs that the Government's putting together.
    > I mean, yes we will get a different Government but the
    > people in the Ministries are not going to change, right?
    >
    > What I am asking is how do we go about getting a firm
    > answer/commitment from the new party in order to see some
    > postive changes for our kids. Now, I know our MLA has been
    > greatly supportive, etc. but are things really going to
    > change in terms of funding for our kids if the Government is
    > changed?
    > What should we do in terms of trying to make that a reality?
    >
    > Thoughts/suggestions?
    >
    > Barbara
    > Jeremy's Mom
    >

    #2553

    Isaac
    Participant

    To all FEAT BC e-mail list subscribers:

    An appeal was formally filed today against the BC Government in the ongoing struggle to secure publicly funded, medically necessary autism treatment for children with autism.

    A portion of today’s FEAT BC press release is below. The full release can be downloaded via the link in this post.

    Regards,
    Isaac (Miki’s Dad)

    ____________________________________________
    After winning a landmark judgment against the provincial government in BC Supreme Court, the families of children with autism have been forced to file a Notice of Appeal today against the approved remedy which heaps more injustice on defenceless children.
    ____________________________________________

    The link below downloads the complete FEAT BC press release:

    http://featbc.org/downloads/FEATbc.release_02_21_01.pdf

    #2552

    Hi everyone,

    Does anyone have a taped copy of the CBC interview? or know how to get a transcript copy? My audio is not working!

    Thanks,
    Barbara

    #2551

    Thanks Isaac for posting that re: radio show.

    Way to go Jean! You were fantastic! Amazing! Very powerful! Gotta listen to it again….

    Barbara

    #2550

    Isaac
    Participant

    Today on the “Daybreak” show, CBC radio aired a piece on government’s new, so-called “intensive, behavioural”, autism intervention project.

    Robin Syme, a senior official from the Children’s Ministry, (A/Director, Child, Family and Community Living) described the autism project and her view regarding the most recent BC Supreme Court ruling.

    Jean Lewis, FEAT BC Director, presented FEAT BC’s position on the government autism project.

    It’s worth a listen. The program can be heard at the following address http://www.featbc.org/files/media/radio/autism.ram

    Thank you Jean. Outstanding job!

    Isaac (Miki’s Dad)

    #2549

    Hi Everyone:

    I was wondering what thoughts everyone has on the upcoming election. Does anyone think a change in Government will help our kids and push through individualized funding for proper 'Lovaas' ABA programs and not these great little 'eclectic' programs that the Government's putting together. I mean, yes we will get a different Government but the people in the Ministries are not going to change, right?

    What I am asking is how do we go about getting a firm answer/commitment from the new party in order to see some postive changes for our kids. Now, I know our MLA has been greatly supportive, etc. but are things really going to change in terms of funding for our kids if the Government is changed?
    What should we do in terms of trying to make that a reality?

    Thoughts/suggestions?

    Barbara
    Jeremy's Mom

    #2548

    Deleted User
    Member

    Justice Allan's decision was made public last week. I am numb – it is a very disappointing response for us. In my worst case scenario I could not have predicted this response. We are back to the drawing board, and depending on the advice of our lawyers, perhaps back in court.

    An interesting world where there can be talk of $150 m in damages to a private lumber company for past actions on the part of the government juxtaposed to a supposition of "good faith" on the part of the government to do what is right for children with autism. Justice Allan's comments "crediting" families who have undertaken these programs on behalf of their children is feint praise. There is no victory in a finding of breach of charter with no obligation to remedy for all children. In the words of that famous philosopher Bill Gates "Rule Number 1 – Life is not fair – get used to it."

    Tomorrow the sun will shine. "If it is to be it's up to me." We were just hoping to find a cleared path for some of the journey.

    B

    #2547

    Sabrina Freeman
    Participant

    From: Sabrina Freeman
    To: FEAT BC discussion board members
    RE: BC Supreme Court decision

    Hi all.

    As many of you may have heard, Justice Allan recently handed down a supplemental decision regarding remedy in the Auton case against the BC Government. Here are the conclusions of the judgment:

    [65] An "appropriate and just" remedy must be determined by the particular circumstances of the case under
    consideration. I conclude that the petitioners are entitled to the following relief:

    – There will be a declaration that the Crown's failure to provide the infant petitioners with effective
    treatment for their medical condition of autism constitutes a denial of their rights under s. 15(1)Charter.

    – There will also be a direction that the Crown fund early intensive behavioural therapy for children with autism, including autism spectrum disorder. It is presumed that the Government will act in good faith in implementing the appropriate policies to meet its constitutional obligations.

    – The adult petitioners are each entitled to an award of $20,000 for monetary damages.

    You can download the decision from the FEAT BC server at http://featbc.org/decision2001.html or from the BC Supreme Court site at http://www.courts.gov.bc.ca/jdb%2Dtxt/sc/01/02/2001bcsc0220.htm or at

    We are gratified Justice Allan has awarded damages for a Charter breach, even if only for symbolic reasons. Unfortunately, these amounts do not come close to what is required to help parents with the onerous burden of paying for their programs.

    The judge affirmed the BC Government continues to violate the constitutionally guaranteed equality rights of children with autism to effective treatment. She further directed that government “fund early intensive behavioural therapy for children with autism, including autism spectrum disorder”. Although the judge did not specify in her directive that this must be Lovaas Treatment, it is generally recognized that Dr. Lovaas pioneered the intensive behavioural therapy named after him; the Lovaas treatment protocol and Intensive Behavioural Therapy are one and the same.

    Regarding HOW treatment will be funded, the Judge deferred to Government for the time being. This means she is allowing the Government more time to develop their autism treatment project known as the Provincial Centre for Autism and Related Disorders (P-CARD). Rather than providing individualized funding to parents running intensive behavioural treatment programs, the Government has elected to develop centralized diagnostic and treatment sites — there are four sites. The Supreme Court judgment presumes government will “act in good faith” in the implementation of the P-CARD; in other words, the judge is taking Government at their word — for now — when they assure her there will be effective, publicly funded autism treatment capability in place. Unfortunately, the experience many of us have had is that this government is not working in good faith. The judge welcomes us to appear before her if we can show that the government is not satisfying her judgment.

    IMPORTANT: We ask that everyone on this discussion board — families and professionals — let us know what there experiences are with the government autism project referred to as P-CARD in the court case; it may take on different names. FEAT BC will document everything for possible future use in court.

    We will keep all of you posted on future developments!

    Regards,
    Sabrina

    #2546

    Shanan Rice
    Member

    SO…WHAT'S THE DEAL???????
    The news is saying today that the government
    has been ordered to pay for the treatment of
    our children. Is this true??? Should we be
    jumping up and down, or is this something we
    need to be cautious about? (I'm sure a lot of
    you have heard the same news and are
    wondering about this too) If anyone has the
    real "scoop" on this…..I'm all ears!

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