This topic contains 1,765 replies, has 143 voices, and was last updated by  Andrew Kavchak 13 hours, 1 minute 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 - 1,741 through 1,750 (of 1,765 total)
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  • #2504

    Isaac
    Participant

    Hi FEATbc listers,

    Here is a letter to the editor published in today's Sun. I think many on this list may have opposing views and if so, now is the time to get out your pen and send your thoughts to the editor of the Sun.

    Isaac
    (Miki's Dad)

    ___________________________________________________
    (Letter to the Editor, reprinted from the Vancouver Sun)

    Letter of the day: Lovass therapy is no cure-all for autistic
    children

    Carole McClean and Christopher Booth Vancouver Sun

    We are pleased by B.C. Supreme Court Justice Marion Allen's recent
    judgment that autism is a medical disability and the province must
    provide treatment (B.C. discriminated against autistic kids, judge
    rules, July 28). But we hope that when future decisions are made
    regarding funding other approaches to autism treatment are not
    disregarded.

    There is a disservice done to autistic children and their parents in
    publishing articles suggesting that a Lovaas style early
    intervention program using applied behavioural analysis is the
    "cure" for autism and that all parents should, and are, asking for
    funding for such program. We and many others believe that the Ivar
    Lovaas's methods are cruel and dated and his premise shows a
    complete misunderstanding of the autistic child.
    That there is one golden treatment for any given medical condition
    is absurd, particularly when so little is known in the complex area
    of neural physiology and anatomy. The results of the Lovaas early
    intervention program are all based on one study involving 38
    children (19 control and 19 test), and the follow-up on some of the
    children years later.

    Just because the Lovaas method has been done for 30 years does not
    mean it is the right thing to do. As the parents of an autistic five-year-old,
    we would urge all parents with autistic children to find out as much as possible about
    autism through a variety of sources. The key to helping autistic
    children is to understand them. There exist many other treatments
    and each child must be treated as an individual.
    There is no cure for autism, but there are ways to raise children to
    be successful and confident adults without resorting to a Lovaas
    program of therapy.

    Carole McClean, Christopher Booth, West Vancouver

    #2503

    Isaac
    Participant

    There is a great piece in the e-zine http://www.click2advice.com on the recent BC Supreme Court decision.

    The story is at this address:

    http://www.click2advice.com/news_details.asp?newsid=61

    Isaac
    (Miki's Dad)

    #2502

    Hello Everyone:

    I bought the Saturday Okanagan paper because there was an article with us and the impact of the court decision. I was about to throw away the rest of the paper but the editorial headline caught my eye. Thought you guys might enjoy it.

    EDITORIAL

    JUDGE SLAPS GOVERNMENT

    The short-sightedness of government decision making was borne out this week when a Supreme Court Justice found the province has discriminated against society's most vulnerable.

    Justice Mary Ann Allen ruled the province's failure to fund the only treatment for autism many parents and doctors say is effective violates the Charter of Rights.

    Four parents sued the province on behalf of their autistic children to receive government assistance for the highly effective, but costly, Lovaas program.

    The decision comes as a mixed blessing for a Penticton mother who led a lengthy campaign to restore funding for her autistic child.

    Barbara Rodrigues collected signatures, created a Web site and picketed on a daily basis for weeks after funding for her son Jeremy was cut off by what could only be seen as retribution for the lawsuit with which she was not associated.

    She and her husband Joe have been forced to spend their savings and borrow money to keep Jeremy in the Lovaas program, which has been shown to allow up to half of those treated to lead a relatively normal life. Other parents have been forced to stop the program.

    The province contended that studies purporting to demonstrate the effectiveness of Lovaas autism treatment have serious flaws and that it is still an experimental therapy. And it was argued court orders to require specific medical treatments could lead to a checkerboard effect in the medicare system with some services constitutionally entrenched and others de-listed.

    Justice Allen dismissed such arguments, and though she could not quantify a cost-benefit analysis that suggest more than a million dollars is saved for each autism suffer who responds well to treatment, she sided with the parents in the broad sense.

    "It is apparent," she stated, "that the cost incurred in paying for effective treatment of autism may well be more than 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."

    She went on to dismiss the potential for "catastrophic results to the health care system," and stated "if there is a constitutional violation that must be redressed, a remedy can be fashioned without the wholesale destruction of the government's medicare system."

    Both sides agree the window of opportunity to help youngsters who suffer from autism is small. The province no longer has any excuse to ignore those who cannot speak for themselves. For their sake, if not for the taxpayer's, it must do the right thing and immediately provide funding where prescribed.

    END

    I hope those of you who have the time, will take a moment to comment to the editor on this editorial.
    They also did a nice article with us.

    the web site is http://www.ok.bc.ca

    Barbara
    Jeremy's Mom

    #2501

    Deleted User
    Member

    It is one of the happiest day in my life and my daughter's life.We both can hope for a normal future.I hope to go back to regular life and my job,Elizabeth will have access to me and other people.THANK YOU !
    Krystyna,Elizabeth's mom

    #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

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