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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 - 1,811 through 1,820 (of 2,008 total)
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  • #2834
    FEAT BC Admin
    Keymaster

    Correction to the previous post.

    The Globe and Mail article on Norrah's Whitney's autism Human Rights
    Complaint is available at:
    http://www.globeandmail.ca/servlet/ArticleNews/printarticle/gam/20020124/ULUKEN

    #2833
    FEAT BC Admin
    Keymaster

    Regarding the Whitney Human Rights complaint filed today with the Ontario Human Rights Commission, Norrah Whitney and legal counsel — Michael Loughlan — have made available a ‘template’ of the complaint document filed for Norrah’s son, Luke.

    For discussion board members residing in Ontario, please be advised that in your province, anyone can file a human rights complaint as an individual, and do so by mail.

    Mailing address:

    Ontario Human Rights Commission
    8th floor, 180 Dundas St. West
    Toronto, Ontario M7A 2R9
    Ph. 1-800-308-5561

    Parents interested in filing their own complaint need only change some of the basic parts of the ‘template’ complaint document to customize name, address, etc. The Ontario Human Rights Complaint ‘template’ is available for download from the FEAT BC server in two formats:

    1) Text editable MS Word
    – click here –> https://featbc.org/downloads/ON_Human_Rights.doc

    2) Adobe Acrobat PDF
    – click here –> https://featbc.org/downloads/ON_Human_Rights.pdf

    The Globe and Mail article on Norrah's autism Human Rights Complaint is available at:

    – click here –> http://www.globeandmail.ca/servlet/ArticleNews/printarticle/gam/20020124/ULUKEN
    (copy and paste into browser location or address line)

    #2832
    FEAT BC Admin
    Keymaster

    TORONTO GLOBE + MAIL, January 24, 2002
    *********************************************

    Ontario woman sues over son's care

    By GAY ABBATE

    Thursday, January 24, 2002 – Print Edition, Page A4

    The six-year-old great-grandson of a man who helped develop
    Ontario's health-insurance plan will be the centre of a battle
    with the province over the loss of his medical treatment.

    Today, Luke Burrows's family will file a complaint against the
    government of Premier Mike Harris with the Ontario Human
    Rights Commission in Toronto.

    Luke is autistic, and without the special — and very expensive
    — treatment he requires, his mother says he may never learn
    the skills to lead a relatively normal life.

    The commission will have to adjudicate what services and
    treatments the Ontario government should pay for under the
    Ontario Health Insurance Plan.

    The boy's great-grandfather, John Leo Whitney, helped
    develop the health-insurance plan that promised universal
    medical care.

    For the past year, the government has financed an intensive
    program for autistic children, known as Applied Behaviour
    Analysis, or ABA. To be eligible, children must be under the
    age of 6.

    And for Luke, who just turned 6, his mother Norrah Whitney
    argued that's discrimination under the Ontario Human Rights
    Code and a violation of his constitutional rights.

    "If the province pays for treatment to a four-year-old, then it
    should provide it to a six-year-old," she said in an interview.
    "It's illegal to discriminate based on age."

    The treatment can cost as much as $63,000 a year, beyond the
    ability of most families, she said, adding that getting treatment
    for Luke has eaten up all her financial resources and destroyed
    her marriage.

    Ontario is facing two lawsuits resulting from the cutoff age. A
    $70-million lawsuit has been brought on behalf of 22 families;
    the other by a single family.

    The British Columbia Supreme Court ruled on a suit in July of
    2000 that the treatment is "medically necessary" and should be
    financed by the province. It also ruled that failure to pay for
    this treatment was discriminatory and violated the Charter of
    Rights and Freedoms.

    Ms. Whitney said that Luke has made great strides since he
    began treatment. The silent, morose child who bashed his head
    against the wall and didn't know his own mother now speaks in
    sentences, reads at the Grade 1 level and was able to blow out
    the candles on his sixth-birthday cake, she said.

    But he needs more treatment if he is to continue making
    progress and not backslide, she said.

    The government, she said, should spend some money now to
    help the hundreds of children in Ontario who need treatment to
    avoid spending millions of dollars on keeping them in
    institutions.

    #2831
    Barbara Rodrigues
    Participant

    Hi Everyone:

    Just wanted to wish everyone a Happy New Year.

    I also wanted to thank Linda Cucek for sharing the important Children's Commission Tribunal document with us. I know it's very hard to have to go public in order to save your child and it's really appreciated by all of us.

    Well, I am heading out for day 120. My MLA Bill Barisoff no longer answers my letters – oh, okay, he never did.

    Public support though has been incredible. People are honking and waving on average 3 times every day I am out there. Lots of thumbs up and waves. Before Christmas a senior lady and her daughter stopped on Main Street and gave money towards Jeremy's treatment. Another man came to the house to drop off 50.00 towards Jeremy. Didn't even want to leave his name, just read our stories in the paper. On one cold day in December a lady asked about the story and then went on her way into the mall only to return a short time later with a cup of coffee for me.

    Yesterday a guy stopped and said he was a musician/song writer. He had followed Jeremy's story -the first time and now. He said he had been writing some political songs lately. He had also thought a lot about the tragedy in Kelowna. He wanted to know if he may write a song about Jeremy for Jeremy. I said of course!

    Well I just wanted to update you. Oh, and the paper did print my letter to H. Beaugrand along with another great one from a therapist here in town. (thank you Tory). Plus there were also other letters of support from the general public! So it was very amazing.

    We will win someday. Hang in there everyone. Things are happening, people are coming forward, our children's voices will be heard. People like Norrah in Ontario (I hear you're a natural!) are going public and fighting strong. Thank you to all of you. Your efforts benefit us all.

    Keep fighting. Take care. Give your(our) kids a hug.

    Barbara
    Jeremy's Mom

    #2830
    FEAT BC Admin
    Keymaster

    The ongoing autism treatment dispute in the media …

    CKNW Radio, "Bill Good Show": FEAT BC Director Jean Lewis and Deborah Antifaev discuss broken election promises made by Gordon Campbell's BC Liberal Government regarding autism treatment.

    To hear the show –> https://www.featbc.org/the_media/

    #2829
    Deleted User
    Member

    I just wanted to thank Dr. Sabrina Freeman for getting on board and lending a helping hand to the children here in Ontario today. I only wish it could have been a longer show and
    I wish we were as fortunate as BC…
    Thanks again on behalf of many families here Sabrina, your time and help were greatly appreciated.
    With deep Respect,
    Norrah Whitney

    #2828
    FEAT BC Admin
    Keymaster

    Many members of this discussion group may have heard CBC’s radio news broadcasts this morning regarding James Cucek, son of Linda and Stan. The news was about how the BC Government is arrogantly ignoring its own Children’s Commission findings regarding autism treatment for James, in particular, and the treatment rights of older children in general.

    After its formal 2001 Children’s Commission Tribunal hearing on harm being done to James, the Children’s Commission issued a report, finding the Cuceks' son MUST receive government funded ‘Intensive Behavioural’ autism treatment. Significantly, the Commission arrived at this ruling even though James is older than Government’s arbitrary age-six cut off for autism treatment services.

    In a shocking display of indifference, Government has not even BOTHERED to respond to the Children’s Commission report, let alone comply with it.

    The Children’s Commission autism report is groundbreaking, which is likely why the silence is deafening across the waters in Victoria. The twenty-one page report is available — by permission from the Cucek family — at https://featbc.org/downloads/childrens_commission.pdf

    Isaac (Miki*s Dad)
    Volunteer Board Admin.

    #2827
    FEAT BC Admin
    Keymaster

    Autism in the news …
    ******************************************

    "CBC TV news — 'Canada Now' program:

    "Barbara Rodrigues renews her 100+ day protest picket against the BC Government, in an unrelenting fight for son Jeremy’s constitutionally mandated right to medically required autism treatment."

    To view the CBC clip, please visit FEAT BC's web site at https://featbc.org/the_media … click on 'video interviews'

    … or, go directly to the alternate link: https://www.featbc.org/files/media/video/Barbara011205.html

    #2669
    FEAT BC Admin
    Keymaster

    CHBC TV News: Penticton’s Barbara Rodrigues — Jeremy’s mom — challenges autism *Broken Promises* at the BC Government Caucus meeting in Penticton BC.

    During her protest, Barbara faces Gordon Hogg, Minister of Children and Family Development, and Rick Thorpe, Minister of Competition, Science and Enterprise.

    Click on the link below to view the TV news piece:

    –> https://www.featbc.org/the_media/ (click on ‘Video Interviews’)

    –> Alternate link: https://www.featbc.org/files/media/video/BarbaraVsMLAs0110.html

    #2668
    Sabrina Freeman
    Participant

    The Canadian Legal Network for Children with Special Needs has a new telephone number: Ph 604-899-0543, Toll Free 1-866-899-0543. Their updated Brochure is at https://featbc.org/legalnetwork.pdf

    Below is a repost of the announcement for this very important national legal organization for children with special needs.

    *********** REPOST ***********

    NEW LEGAL ORGANIZATION FOR SPECIAL NEEDS CHILDREN
    _________________________________________________________

    To all FEAT BC discussion board members:

    I have some very important and exciting news! A new, national legal organization has just been established across Canada that is very important to the best interests of our children as well as all children with other special needs. This organization is “The Canadian Legal Network for Children with Special Needs”.

    The non-profit society is a group of concerned lawyers working together to advance the rights of children with special needs and enhancing the legal remedies available to special needs children. The society accomplishes these goals through promoting quality legal representation and excellence in advocacy, promoting implementation and enforcement of the UN Convention for the Rights of the Child, and encouraging lawyers and lay advocates to increase their involvement and representation on behalf of children with special needs.

    In other words, The Canadian Legal Network for Children with Special Needs is an organization that will “level the playing field” and make it much easier for parents to find capable legal representation that is up to the task of challenging the formidable resources of government, whether it be a school district or a provincial ministry of education or health; the Legal Network is designed to further the rights of special needs children at all levels. It’s noteworthy that the Constitution of the Canadian Legal Network for Children with Special Needs does not permit affiliation for lawyers who are employed by, or under contract to, government.

    I could go on and on about the tremendous promise this new organization holds out. Instead, you can download a brochure, which describes their mandate in more detail.

    Click here for brochure –> https://featbc.org/legalnetwork.pdf

    Since Canadian provinces have their own jurisdiction over health care and education, each province will eventually have its own affiliate of this new national organization. Initially, The Canadian Legal Network for Children with Special Needs is setting up its B.C. organization because lawyers establishing the organization are based in B.C.; however, there already several lawyers across the country working on special needs cases who shortly will organize their respective provinces. FEAT BC is proud to be the charter member of The Canadian Legal Network and we encourage all members of this discussion group to become members of the network either as individuals, corporate or organizational members. We strongly urge all FEAT’s across the country to step up to the plate and support this vitally important special needs legal organization.

    Many of you over the years have asked how you can help the cause. This is a historic; watershed opportunity to contribute to the welfare of every special needs child in B.C. and across Canada. By becoming a member and encouraging everyone who cares about your child to become a member, you will help lay the foundation for an organization that will, at long last, hold all levels of government accountable for special needs policies that work against the best interests of our children’s health, education and well being.

    Address information:
    The Canadian Legal Network for Children with Special Needs
    114 – 990 Beach Avenue
    Vancouver, B.C. V6Z 2N9
    Ph. 604-899-0543
    Toll Free: 1-866-899-0543

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