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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 - 1,381 through 1,390 (of 2,008 total)
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  • #1480
    Barbara Rodrigues
    Participant

    I was asked to post this – let's do what we can and send letters up there for this Mom.

    FEAT Members

    I am interested in seeing if some of the posters to Featbc could send their "letters to the editor" to the Yukon Territory�s newspapers.

    The Whitehorse STAR: letters@whitehorsestar.com and
    Yukon News: stever@yukon-news.com

    In a strange coincidence, the outcome of my Human Rights Commission case was finally decided on November 17 and I received notice on the 19th. It turns out we won our case. The government was found to have discriminated against us on the basis of disability and on age. The government has 90 days to respond. Along with the letter I received on the 19th, a copy of the Auton case was enclosed. I am hoping that this won't affect me… but you never know. I am hoping that if some of the letters featbc members are writing can make it to our
    newspaper, and we raise awareness in the Yukon, then maybe the government won't be so quick to fight us.

    If you could be so kind as to post this for me, I would appreciate it.

    Thank you.

    Dianne Villes�che
    ravenink@northwestel.net

    Mother of Sara, a 14-year-old child with autism

    #1481
    Barbara Rodrigues
    Participant

    Ah, Andrew – you brought tears to my eyes with your note – especially with your 'page across your chest'. Thank you for all your hard work and dediction. We are lucky to have you on board.

    Barbara
    Jeremy's Mom
    A little boy who does not yet speak
    But whose voice must be heard.

    #1482
    Andrew Kavchak
    Participant

    Hi Folks,

    Good news about the tabling of the autism petition in Parliament. This morning in the foyer of the House of Commons two MPs joined me and three other parents of autistic children to discuss the tabling of the petition in a media scrum. The TV cameras were there and a number of reporters. The scrum went very well and I wore a page across my chest with "featbc.org" and asked all Canadians to go to the website and download the petition, sign it up and send it in! We have to create a flood of petitions to put the pressure on the government to take action to bring our kids within the medicare system and stop the discrimination. I forwarded some digital pictures of the media scrum and hope that they can be posted on the website somehow.
    Please watch the news tonight!
    Andrew (Ottawa)

    #1483
    Barbara Rodrigues
    Participant

    Justin:

    Could you post or email your private email joe_rodrigues@telus.net- I have the emails of the NDP MP's for you.

    Thanks for the info on the papers – if someone could let us know up here in the Okanagan when a good story/letter comes out so we can pick it up that would be great.

    Barbara

    #1484

    Autism in the news!!! (again!)

    I would encourage everyone to pick up a copy of the Vancouver Sun today. There are two brilliant pieces in the paper. One of them from our very own Ursula Lee. Ursula, thank-you from my entire family.

    Online autism petition URL makes The National Post! In letters to the editor today, The National Post comes through for us again. The email address for their Letters Editor will be in the email list that I send out. Make sure they get a copy of everything you send.

    Justin

    #1485

    Oops!
    For crying out loud, I meant Nov 22, 2004.
    Jean is on the radio just before Sabrina's fabulous interview!

    #1486

    Also worth listening to is our very own Jean Lewis (at about 2:18pm, November 21… on with Michael Campbell) just ripping into another one of those "well-meaning and very sympathetic people who would just love to see the PARENTS of children with autism get some more babysitting"
    AWw, shucks, thanks for your kind support….
    Jean, you were awesome!!

    #1487
    Barbara Rodrigues
    Participant

    Wow! Great great interview on CKNW Sabrina. You did an amazing job of getting the story out – Fantastic.

    Please everyone get everyone you know to take a listen – it makes our point so perfect, so strong.

    Please get those petitions signed also. For those of you who are new – please please understand that this is very serious – we are now back to pre-Auton days and the black clouds are brewing (to delete funding – to make it impossible to get). Oh, we are relatively safe until May but come June . . .tornado season for our kids. Please do not underestimate the evil over there in Victoria – if they would fight us all the way to Ottawa and fight us with bogus -bought for with your tax dollars science – imagine how they will treat our kids now that they think they can.

    We are a minority as Dr. Freeman said – we need to make lots and lots of noise.

    Barbara
    Jeremy's Mom

    #1488
    Lis Louwrier
    Participant

    Hello all,

    This is the letter Ariel sent to the Times Colonist. I don't know whether it will be published.

    Lisbeth Louwrier
    Victoria

    RE: "Treatment for autism not a right", Nov. 20

    As a parent of an autistic child, currently in his 2nd year of ABA Lovaas treatment, I continue to be amazed by his progress. We opted out of the Provincial Program to carry out a home-based Lovaas therapy in 2003. As a scientist with 15 years in the biotechnology industry, pharma and academia, I was able to access and read some of the countless peer-reviewed papers in scientific journals as well as the Lovaas study (1987), which is now well established. There are accountable measurables; as a method, evolution and a maturation in the sophistication of how it is applied today. Our US consultant is extraordinary in her elegant application of this knowledge. Simply put, the method works. 40 hours of weekly early intervention is best practice. The literature, neutral and peer-reviewed without relevance to special interest groups shows this without question. Surely we should aim for best practice, would anyone want treatment from a dentist to conduct a bone-marrow transplant?

    Is the financial cost for treatment really that high? Logic dictates that the cost of inaction will be very much higher – for children and taxpayers. To paraphrase Edmund Burke “the only thing necessary for autism to prevail is for good people to do nothing”. With autism currently affecting 0.5% of all newborn children and rising at roughly 4% per year due to what can only be environmental effects, I am not sure we have a choice.

    #1489

    Sorry, Justin! What can I say? It has been a long 4 days, and I am not the best with names to begin with:-)!!!

Viewing 10 replies - 1,381 through 1,390 (of 2,008 total)
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