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 - 1,731 through 1,740 (of 1,765 total)
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  • #2514

    Isaac
    Participant

    Courtesy of David Chan — Feat BC Richmond — here is a Chinese news clip from the Sing Tao Daily regarding the recent BC Supreme Court decision on autism treatment.

    http://featbc.org/downloads/Sing_Tao_Daily_07_29_00.pdf

    #2513

    Isaac
    Participant

    RE: Gordon Campbell on CKNW, 08/08/00

    Sabrina Freeman spoke with the leader of the BC Liberal Official Opposition today on CKNW’s Bill Good Show.

    It’s available on the web at http://wms.cknw.com/cknw/8-8-00_11-05-00_AM.asf

    Regards

    Isaac
    (Miki’s Dad)

    #2512

    Isaac
    Participant

    … some news from the Okanagan this week.

    BC MLA Rick Thorpe, published a piece in the Okanagan's Western Advertiser newspaper.

    http://featbc.org/downloads/WesternAdvertiser_08_02_00.pdf

    Aside from one misinformed gaffe regarding the Okanagan-Similkameen Neurological Society, the article reflects needed political support for our kids (Okanagan's OSNS … Barbara Rodrigues in Penticton is very familiar … mailto:joe_rodrigues@bc.sympatico.ca)

    #2511

    Isaac
    Participant

    Hi everyone,

    A Langley paper ran a nice, *local angle* piece this week relating to the recent Supreme Court decision … thought we would share with the group.

    http://featbc.org/downloads/AdvanceNews_08_01_00.pdf

    Isaac
    (Miki's Dad)

    #2510

    Deleted User
    Member

    Just wanted to thank the four families who had the courage and strength to fight for our cause and WIN!!!! Congratulations!

    Thought Avery would also be interested to know that once when I went through the sites that promoted Dolphin Therapy, I realized that what they were doing was actually ABA style behaviour modification. They make the child do drills and as a reward, or reinforcement, take them out to swim with the dolphins!

    So, even DOLPHIN THERAPY confirms that ABA is the effective method of treatment!!!

    Katy
    Laila's mom

    #2509

    Deleted User
    Member

    Hello all.

    Very well put Barbara and Dave. I too wrote a letter and I hope others will too. Mine was nowhere near as comprehensive as yours. The more accurate information we can get out there the better.

    I can't figure out why people continue to have these ridiculous outdated opinions when if they just opened their eyes they could see the reality?!?!? I mean what is cruel about teaching your child to experience the world and to learn from those experiences?

    Its frustrating. But at least I can sleep at night (as I think David Chan put it). My daughter is 31/2 and has only been in her program for 2 months and we can already see the differences. You can't tell me that what we are doing is wrong. I could never go back to the days when I felt sad and lost as to how to help my daughter.

    I look forward to reading responses in the Sun or elsewhere.

    Michelle Karren

    #2508

    Hi Everyone,
    Just wanted to share the letter to the Editor I forwarded yesterday and to encourage all of you to do the same.
    Letter to the Editor

    Dear Sir,

    I am writing in response to the recent BC Supreme Court decision calling on the government to fund treatment for children with autism through health care. I laud this judgement. It is a critical decision to the lives of so many children who to this point have been second class citizens in the eyes of our government. I am the parent of a six year old autistic son. If my son had been born with a physical handicap, his treatment would be covered under health services. Because he has a mental handicap, no treatment is provided for him. It is a statement of the government’s belief that there is no hope for these children. We know this is not true.

    Our son Alex has been involved in a Lovaas ABA home program since January 1997. I can’t imagine what his life and, therefore, our lives would be like without this treatment program and its benefits. Because of this teaching technology, our son can dress himself, toilet independently, feed himself, and brush his teeth. He has learned to ride a bike, rollerblade, swim and do gymnastics. While his language is severely impaired, he is learning to read and using this skill to develop oral language skills. He has had a successful year in a regular kindergarten class with the support on an ABA trained aide. He is an affectionate, happy, easy-going little person. Because of this treatment methodology, he is continuing to learn and grow on a daily basis. We are among the lucky parents who have been able to find the dollars to pay for this program. There is now hope that all children with autism will have access to this treatment.

    In the Sun editorial of July 31st, questions were raised about the costs of treating our children. Important information was missing from that editorial. Cost benefit analyses, available from a variety of sources and presented at the trial, confirm that the short term costs of early intervention result in significant cost savings to the system over the lifetime of care that is required for untreated individuals. In the "letter of the day" on August 1st, parents characterised Lovaas treatment as cruel, dated and based on a misunderstanding of the autistic child. Nothing could be further from the truth. This letter perpetuates the old myths about this treatment. It does not claim to cure all children. It is in fact an up to date, positive teaching methodology practiced world-wide, funded in many countries and other provinces of Canada that has resulted in the normalization of many children and significant gains for all others. The reality is that no other treatment option is scientifically based nor can make the same claims.

    In my opinion, the current system is cruel to children and families living with autism. It is cruel to have families waiting for up to two years for diagnoses at the crucial time for best outcome treatment for their child. It is cruel not to provide them with current research that clearly outlines treatment options and their levels of efficacy. It is cruel to require them to put their children into custodial care either in day cares, preschools or respite situations in order to access funding. It is cruel to withhold information until they come up with the right questions about how to access what is available to them. It is cruel to spend limited dollars on a pilot project ( in excess of a million dollars) to research treatments when $15.00 US will buy a copy of the New York State Department of Health’s recent publication that will give them all the current information and research on that exact topic. It is cruel not to provide funding for a treatment that is proven to significantly improve the lives of children.

    This judgement has exposed the inadequacies of support for autistic children. It debunks the myths about Lovaas-style ABA therapy, confirming its efficacy and declaring it to be medically necessary. It concurs that the cost benefits of early intensive intervention over a lifetime of custodial care are significant. It is time to get on with the remedy suggested by the court and to give our children hope to be contributing members of society and the opportunity to be tax payers themselves one day.

    Barbara and David McLeod

    6277 West Island Highway

    Qualicum Beach, B.C.

    (250) 757-8566

    #2507

    How do you spell government stooge? Gee, could it be Carole McLean and Christopher Booth? Let's see, shall we take it in order?:

    "…we hope that when future decisions are made regarding funding other approaches to autism treatment are not disregarded."

    Hmm, dolphin therapy, perhaps?

    "There is a disservice…in publishing articles suggesting that a Lovaas style early intervention program using applied behavioural analysis is the "cure" for autism."

    Ah yes, the "Lovaas claims cure" argument. Seems the government tried that one to no avail as well. Do any of us use the "C" word? Does Lovaas or McEachin or Smith or Madam Justice Allan? I thought not.

    "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. "

    Oh yes, them and many others, like government hacks and "service providers" on their payroll. Such dated methods. Unlike such "new" treatments as Hanen, pulpwood diets, and let's not forget dolphin therapy,

    "That there is one golden treatment for any given medical condition is absurd…"

    Of course not. After all, why treat bacterial infection with antibiotics when there are so many alternatives, like faith healing…or DOLPHIN THERAPY!!!

    "Just because the Lovaas method has been done for 30 years does not mean it is the right thing to do."

    No, just because it's been done for 30 years, researched and proven effective — THAT'S why it's the right thing to do. But heck, if you want something new, there's always DOLPHIN THERAPY.

    "…we would urge all parents with autistic children to find out as much as possible about autism through a variety of sources."

    Funny, that's what we did, and guess what — we found out there was only one therapy program that has any effect, and now we have a laughing happy beautiful daughter, instead of the withdrawn, sad child we once had. But maybe she'd be doing better if we'd tried THE MIRACLE DIET! (thought I was gonna say dolphin therapy, didn't you?)

    "There exist many other treatments…"

    Name two with any proven effectiveness.

    "and each child must be treated as an individual…"

    Which is why Lovaas programs require consultants and plans and data collection and adaptation and generalization, as opposed to, say, DOLPHIN THERAPY, which works exactly the same way on ALL autistic children.

    "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. "

    Sure there are. You can raise children to be successful and confident adults without Lovaas therapy…as long as they're not children with autism….or are on such a mild end of the spectrum as to have few deficits to start with.

    I hope with all my heart that these idiots have an extremely high-functioning five-year-old. Otherwise, they're going to get a harsh wake-up to reality in a few years, and their child will be the one who has paid the price for it.

    If these two are for real, they are the perfect shining example of how misguided, misinformed and malignant people can be in their ignorance, and they are the best example of why this lawsuit was so necessary, and why this government deserves to be punished for the myths and malicious negligence they have perpetrated on our children for far too many years.

    Sorry about the endless vent. Sometimes I don't know whether to laugh, cry or scream.

    Avery
    Ariel's Dad

    #2506

    David Chan
    Member

    Hi
    I get the Sun, and I missed it, can you believe
    it. I gotta say, I have done the research, no I
    did not pick Lovaas out of hat. I think why
    people don't want to admit that the therapy
    works, is that underneath it all, no one wants
    to recognize what a tremendous amount of
    commitment and work it is for the families.
    Wouldn't it be wonderful to give these children
    a shot, or a pill and poof they are normal
    to-morrow.
    Lovaas is back breaking, WORK, make no
    mistake.
    I met this lady
    at the workshop at SFU last summer, her
    comment was, I quote "You guys live this stuff
    don' t you?",
    Pretty much she hit the nail on the head. I bet
    you all these other therpies that are so much
    better, notice none were named, none of them
    will involved the
    sheer work and tenacity that a Lovaas
    program needs. All the
    folks doing programs should be given a
    collective pat on the back,
    for sticking with it and forging ahead.

    Have a good night everyone, I know I will sleep
    better than some people in West Vancouver
    who are chasing rainbows, and finding that
    perfect effortless individual therapy for their
    child.

    Dave

    #2505

    Excuse me, guys, but what planet are these two goons from? Do they have government contracts?

Viewing 10 replies - 1,731 through 1,740 (of 1,765 total)

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