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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 1,792 total)
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  • #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!

    #2545

    FEAT BC Admin
    Keymaster

    message forwarded from Paul L. Thibodeau:
    ____________________________________________

    There is only a few days left before election day. So far there is no indication that the media will cooperate with us.

    We must all make a last effort..IMMEDIATELY .. or NEVER. After the election, like in the past, it will be virtually impossible to obtain a satisfactory resolution of this dilemma which adversely affects the welfare of our autistic children.

    Let's all make a final effort (parents, friends, relatives, etc.) .IMMEDIATELY .. by sending FAXES and/or E-mails to the five (5) party leaders and to as many local candidates as possible.

    This issue must be brought (prior the election) in the open for our children's sake.

    For instance, your communication needs to be short and could take the following form.

    TO: – NAMING THE POLITICIAN

    RE: – 3-TIERS HEALTH CARE SYSTEM.

    Please note (Mr. Candidate) that your response, or lack thereof, for consideration of the URGENT need of autistic children (see attachment) will, surely affect the voting decision, on the 27th, of a large number of voters.

    According to available estimates, one Canadian newbirth in 500 or 1000 is, or will be, afflicted with autism.

    Your public comments and support (Mr. Candidate) will, indeed, be greatly appreciated by many thousand voters.

    Yours sincerely

    Paul L. Thibodeau

    PHONE: – (613) 828-8129

    E – MAIL: – ei415@ncf.ca

    #2544

    FEAT BC Admin
    Keymaster

    Below is an excerpt from a brief issued by Friends of Children with Autism (Ontario) FCWA, courtesy of Paul L. Thibodeau (full brief is at http://featbc.org/downloads/FWCA.pdf).

    _______________________________________________

    The Honorable Paul Martin and the Government of Canada’s Economic Statement.

    The Government of Canada’s pamphlet of October 18, 2000 called Economic Statement and Budget Update – Overview, includes the following points:

    Canada enters the 21st century with greater resources and more choices than it has had in decades. The choices we make will mirror our values as a society and our obligations to each other as citizens.

    With a strong economy and budgetary surpluses, the Government has been able to cut taxes and invest in Canadian’s key priorities of health and education.

    The government makes a commitment to deliver the $21.1 billion in federal funding to strengthen Canada’s treasured system of universal health care as agrees by the Prime Minister and premiers in September [2000]

    [The federal government is committed to] providing $2.2 billion to the provinces and territories for services to the youngest of out children;

    How can the level of miserliness in funding universal health care for children with autism by the provinces continue given that $21.1 Billion for universal health care was promised to the provinces in September 2000 by the government of Canada?

    Just over a month ago the federal government also promised the provinces and territories $2.2 Billion “for services to the youngest of our children”. Young children with autism are amongst the youngest of our children and they are being denied medically necessary treatment and hung out to dry by the Ontario government.

    A Question of Parents with Autistic Children

    One of the questions parents of autistic children are asking is … “When will our society’s obligations to children who suffer the most severe developmental disorder of childhood become evident by fully including these children in Canada’s treasured system of health care and providing intensive behavioral intervention, which is the only scientifically proven treatment that works?”

    A Question for Prime MinisterJean Chretien and Health Minister Allan Rock

    Will Mr. Chretien and Mr. Rock make a visible commitment to the families of autistic children across Canada to use the considerable resources of the federal government to guarantee that no autistic child in need shall be without universal, accessible, comprehensive, portable and publicly administered specialty autism treatment, including the medically necessary and only scientifically validated program of intensive behavioral treatment for correcting and reversing autism, Applied Behavioral Analysis or Intensive Behavior Intervention.

    Two Questions for Candidates for Office as a Member of the Canadian Parliament.

    1. How many candidates running for office as a member of parliament and which parties are prepared to make a commitment to solve this huge gap in medically necessary services for autistic children?

    2. Will you support government allocation an adequate portion of the billions of new dollars the federal government plans to transfer to the provinces, to ensure that Canada’s children with autism can reach their maximum health and remediate to the fullest degree possible their profoundly handicapping disability?

    Politicians from all parties should work to guarantee that "medically necessary" intensive behavior therapy services are provided to young autistic children at developmentally critical periods in their life cycle.

    Prepared by:
    Friends of Children with Autism (FCWA), Toronto, Ontario *

    Contacts for this Brief.

    Dana Vrooman, Toronto, Ontario, Mother of a 4 year old daughter with autism and no public treatment for the condition. tel: 416-494-0041
    Paul Vrooman, M.S.W., Toronto, Ontario, Grandfather of Dana’s 4 year old daughter with autism and no public treatment. tel: 416-406-1933 Cell tel: 416-299-1755
    Suzanne Wetzel, Ph.D., Sault Ste Marie, Ontario, Mother of a 6 year old son with autism and no public treatment for the condition. tel: 705-742-6552
    Huguette Boisvert, Ottawa, Ontario , Grandmother of a 4 year old boy with autism and no public treatment for the condition. tel: 613-722-5068
    Simon Wynberg, Toronto, Ontario, Father of two twin boys with autism and no public treatment for the condition. tel: 613-961-5546

    _________________________________________________

    * Friends of Children with Autism (Ontario) FCWA is a group of families whose goal is to
    get medically necessary treatment, education, social services and financial supports for their own young children and those of other Ontario families in order to ameliorate the devastating effects of a serious neurological disorder of the brain called autism spectrum disorder or pervasive development disorder.

    FCWA is challenging the government’s continuing refusal to provide essential levels of universal, accessible, portable, comprehensive and publicly administered health care to all children with autism spectrum disorder including the medically necessary and only scientifically validated program of intensive therapy for correcting and reversing autism, Applied Behavior Analysis or Intensive Behavioral Intervention.

    One of the activities of FCWA has been to retain the services of Toronto lawyer David Corbett to launch a legal action against the Government of Ontario for its failure to provide adequate health care, educational services and funding for children with autism in Ontario.

    FCWA is challenging the continuing failure by the Province to recognize the most basic rights of children in Ontario: the rights to necessary medical care and an education.

    (full brief is at http://featbc.org/downloads/FWCA.pdf).

    #2543

    FEAT BC Admin
    Keymaster

    The Canadian Press

    National general news Wednesday, November 15, 2000

    Quebec parents want to file lawsuit for better services for autistic kids

    The Canadian Press

    LENGTH: Short

    SUBJECT: Justice; Politics; Health

    HOUR OF PUBLICATION: 23:27

    MONTREAL (CP) – After 10 years of lobbying for better services, the parents of 46 autistic children want to take the Quebec government to court.

    The parents say they are forced to scrape together $40,000 per year for private services not offered by the province.

    They are asking Quebec Superior Court for permission to pursue a $15-million class-action suit.

    "It's a complete injustice," said group spokeswoman Linda Gaudreault.

    "Not only do we have to pay but the services are inaccessible. All kids have the right to a future. Today we're forcing the government to do something."

    The parents want the government to provide a treatment called ABA, or Applied Behavioural Analysis. It treats autism as a behavioural learning disability not a form of psychosis.

    A spokesman with the province's health ministry said he could not comment on the lawsuit but noted the department gave $8 million to regional health boards this year urging them to prioritize autism.

    The plaintiffs claim they have not seen the money.

    They're invoking the Quebec Health Act and the Charter of Rights and Freedoms, following the lead of successful claims in Ontario, British Columbia and Alberta.

    The B.C. Supreme Court recently concluded that early, intensive intervention was a "medical necessity" and that the province had violated the rights of children by refusing their access to ABA treatment.

    In Ontario, a $75-million class-action suit by 55 families led the government to earmark $19 million for autistic children.

    (Montreal Gazette)

    #2542

    Sabrina Freeman
    Participant

    BC Supreme Court Advisory
    _________________________

    Hello everyone,

    This message is to advise that the next phase of the autism legal action against the Government of BC will take place in BC Supreme court on the following dates:

    – Tuesday, November 14
    – Wednesday, November 15

    The proceedings will take place in the Supreme Court section of the Vancouver Law Courts. The address is: 800 Smithe St., Vancouver. Parking is available underground. The court room number will be posted on a board in the main lobby — Look for “Auton vs. AGBC”.

    Court is in session from 10:00 am to 12:30 PM and 2:00 PM to 4:00 PM. Everyone should arrive by 9:45 am to allow enough time to settle in — it is very important that everyone is seated and quiet by precisely 10:00 am when the Judge enters.

    As in the 11-day April hearings, there are a few important court rules we need to keep in mind:

    – tape recorders, cell phones and pagers are not permitted in the courtroom.
    – jeans are not permitted in the courtroom
    – no comments, moans or groans are permitted. The judge may ask a person to leave the courtroom for these reasons. Government lawyers may say things that you vehemently disagree with. However, it’s very important for everyone in the courtroom to stay calm and in control.

    Lawyers representing the parents have informed me that they will not be available for questions during the breaks or during lunch since they will be working on the case during these times. The lawyers have instructed
    the steering committee to take all questions anyone has regarding the case — we will make sure they receive the questions after proceedings conclude that day.

    I very much look forward to seeing you in the courtroom!

    Sabrina

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