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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 - 901 through 910 (of 2,008 total)
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  • #2095
    Deleted User
    Member

    Norrah Whitney wrote
    at 1:15pm
    http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/huma-e/rep-e/rep10apr07-e.htm#_Toc164844538

    This is a report just released in the last couple of months from the Canadian Senate regarding children's rights. Some of the witness's that appeared before this committee are significant. First and most importantly we have a CANADIAN sitting on the UN committee for the Canadian signed legally binding document "The Convention of the rights of the child", his name is Brent Parfitt. Also Senator Landon Pearson who would do nothing to help children with Autism when she was repeatedly contacted. UNICEF Canada which would do nothing to help children with Autism when repeatedly contacted and Judy Findlay from Ontario as the Ontario child Advocate who has been empathetic and supportive. I think everyone should take the time to read this.

    #2096
    Mike & Jean
    Participant

    February 27, 2008

    For Immediate Release

    FEAT-BC “Campaign Kick-off Rally”: Sunday, March 2, 2008

    Vancouver, BC: – FEAT-BC [Families for Early Autism Treatment in BC] today announced it will be holding a “campaign kick-off rally” on Sunday, March 2, 2008, beginning at 2:00pm, at the Jack Shadbolt Centre for the Arts, 6450 Deer Lake Avenue, Burnaby. This rally launches the FEAT-BC goes coastal campaign, aimed at influencing the electoral outcome in more than a dozen targeted constituencies across Canada in the upcoming federal general election.

    “ In its Auton decision, the Supreme Court of Canada told parents of autistic children to ‘get political’ if they wanted to see their children no longer be orphans of the Medicare system,”states Jean Lewis, a founding director of FEAT-BC. “Well, we’re taking the judiciary at their word and launching a nation-wide campaign to elect MPs, regardless of which political party holds office following the next election, who will vote for legislation that enshrines the treatment of autism under Medicare because it is the morally and economically correct thing to do.”

    The rally is intended to attract parents of autistic children and their supporters from across Metro Vancouver. Its aim is to ignite a grassroots campaign that will help elect candidates for Parliament who will support Medicare for Autism Now!

    “As a Canadian who does not have an autistic child, but who believes strongly in the fundamental values of this country, I am disgusted by the federal government’s willful indifference to the plight of these children and their families,” says Scott Hean, who will be master of ceremonies at the rally.

    -30-

    For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and jean.lewis@telus.net.

    #2097

    Hi Everyone,

    Please do plan on attending Sunday's rally. A while ago there was a question about the rally being 'preaching to the choir'. Please know that the choir is going to include media who will get our message out to a far wider range of folks than a sign held up on a bridge or overpass. As well, attending an event with many others who believe in what we are doing, who live everyday with the same issues as we do and who are prepared to stand up and be counted, is both encouraging and motivating.

    For many of us, who have been at this for more than ten years now, the support of other families gave us the courage to look for real treatment rather than respite for our kids. When we risked financial ruin to provide that treatment, to fight the government in court for funding and for ABA access in schools, it was families standing together against bureaucracy and status quo. When we had to fight for every consideration, there was more fire in our bellies. By providing some money to families, the government has managed to buy the silence of many. It will take that original 'pioneer' resolve, commitment and passion to maintain the fight for Medicare for Autism Treatment.

    As previous posts have so eloquently stated – it is time to put aside our treatment debates, see the 'choice' options of government for what they are and stand together for Medicare for Autism Treatment.

    Come and hear from some of the many committed professionals and parents who continue to fight access to treatment for all children regardless of parents' ability to pay. Bring your neighbours and friends who signed the petitions we sent to so many MPs that motivated the National Autism Strategy Bill.

    Autism Treatment is "our children's right and our solemn obligation."

    See you there!

    #2098
    Todd Dea
    Participant

    Ah . . . This isn't Lovaas ABA related but it certainly is pretty huge news;

    http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html

    The title of the article is, "U.S. Government Concedes Vaccine-Autism Case in Federal Court – Now What?

    Basically the government conceded that in this case, vaccines given to this little girl, caused her Autism.

    #2099

    Hi Everyone!

    Tune in to the Bill Good show on CKNW (am 980 radio) tomorrow (Tuesday Feb 26th) at 11:00am to hear Jean Lewis and Scott Hean discussing the “Medicare for Autism” initiative.

    Please listen and call with your comments and support.
    This continued failure to properly fund children with Autism affects us all.

    They will also be talking about the “Medicare for Autism” Rally this Sunday (March 2nd) at the Shadbolt Centre for the Arts. I am sincerely hoping that everyone related to a child with Autism (parents, siblings, consultants, therapists) will take two hours out of their day to show their support.

    Deb

    #2100
    Andrew Kavchak
    Participant

    Meanwhile, at the other end of the country…

    Families dealing with autism are in crisis: senator Munson leading charge to get more help from government to improve services for families

    WAYNE THIBODEAU

    The Guardian

    Michelle Pineau had her suspicions but she was hoping it was something else.

    Her two-year-old son’s speech was not developing normally. But educators and health care workers simply blamed his late development on being a boy.

    Matthieu, now eight, was later diagnosed as autistic.

    “A lot of parents experience being told ‘wait and see’, ‘he’s a boy, boys develop more slowly than girls’,” Pineau said.

    “I really had to push to advance things, to get a diagnosis. That was frustrating.”

    Autism is a complex developmental disorder that typically affects a person’s ability to communicate, form relationships and respond appropriately to the environment. It results from a neurological disorder that impedes normal brain development in the areas of social interaction, behaviour and communication skills.

    There is no definitive cause or cure for this lifelong disorder, which affects four times as many boys as girls and usually manifests itself during the first three years of life.

    According to the U.S. Centers for Disease Control, the incidence of autism is now one in every 150 births. Autism is now more common than Down syndrome, childhood cancer and juvenile diabetes.

    An Ottawa senator said families dealing with autism are in crisis.

    Jim Munson has led the charge nationally for improvements in services for children with autism.

    Munson was part of a Senate committee that, last March, produced a report called, “Pay Now or Pay Later, Autism Families in Crisis.”

    “There are families on the Island who are suffering silently,” said Munson, who is originally from New Brunswick and spent 30 years as a reporter for CTV. He was on the Island this week.

    His son, Timothy James Alexander, motivates Munson. Timothy was born with Down syndrome. He died shortly before his first birthday.

    “There was a time when Down syndrome or intellectually challenged children were put aside. Look what’s happened in that community.”

    Parents on Prince Edward Island continue to struggle to find the services they so desperately need.

    But Pineau is more hopeful now than ever before that those services may be forthcoming.

    Two days after Premier Robert Ghiz took office, Pineau received a telephone call from him. He wanted a meeting with Pineau and others who have been affected by autism.

    Pineau said she’s hopeful the Liberal premier will implement a provincial strategy to deal with autism. She said the province can’t wait for the federal government to act.

    “I’m very optimistic that there is a new era of collaboration in the province,” she said.

    “Maybe we become a leader in the region, or even nationally, in the delivery of autism services. We can certainly encourage other provinces by taking the lead ourselves.”

    Munson said he’d like to see the federal government take the lead so there is not a patchwork of programs and services.

    He wants to see a national autism strategy.

    Alberta is now the leader across Canada, providing up to $60,000 annually to a child with autism up to the age of 18.

    In P.E.I., provincial help comes to a halt at the age of six. There is also a lot less money to provide services to children with autism.

    “It’s expensive but buying tanks is expensive too,” said Munson.

    “What we have now is a patchwork, scattergun approach to dealing with autism in individual provinces.”

    Matthieu Pineau is now a vibrant young boy. He’s a Grade 3 student at Ecole Saint-Augustin in Rustico.

    Luckily, Pineau’s son has not needed medications to treat his autism and he’s enjoying school life.

    “He’s doing well since he started school,” his mom says.

    “He’s coming along. He’s making marked progress.”

    wthibodeau@theguardian.pe.ca

    #2101
    Andrew Kavchak
    Participant

    Breaking news at CBC.ca! The federal government is recognized as having a "manifest disregard for science"!

    FEAT BC and its supporters have known that from day one!

    Only on the CBC is this breaking news. But at least they regarded it as newsworthy!

    From CBC.ca:
    _________________________________________________

    Harper gov't has 'disregard' for science: journal

    Updated Fri. Feb. 22 2008 4:14 PM ET

    CTV.ca News Staff

    A biting editorial published in one of the world's most well-respected journals accuses Stephen Harper's Conservative government of having a "manifest disregard for science."

    The editorial, called Science in Retreat, appeared in Thursday's edition of the British journal Nature.

    "Science has long faced an uphill battle for recognition in Canada, but the slope became steeper when the Conservative government was elected in 2006," it says.

    The editorial says that while Canada's researchers consistently rank among the world's top ten, the federal government's track record on science is "dismal in comparison."

    The Harper government has also been skeptical of the science on climate change and stepped away from Canada's commitment to Kyoto, the journal charges.

    Environment Canada scientists were "muzzled," in January, it says, when they were ordered to rout all media enquiries through Ottawa.

    "Last week, the prime minister and members of the cabinet failed to attend a ceremony to honour the Canadian scientists who contributed to the international climate-change report that won a share of the 2007 Nobel Peace Prize," it says.

    Specifically, it is critical of Ottawa's decision to move the office of the independent national science adviser away from the prime minister's offices to Industry Canada.

    The adviser, chemist Arthur Carty, was appointed to the post in 2004 by then-prime minister Paul Martin and gave up his position as president of the National Research Council Canada.

    "But his new office was destined to fail. The budget was abysmal and the mandate was vague at best," the editorial says.

    In 2007, when the government formed the 18-member Science Technology and Innovation Council (STIC), Carty was informed that Ottawa would no longer need an adviser and he offered his resignation.

    Starting in March, the STIC will provide policy advice and report on the country's performance in science and technology.

    But the editorial goes on to lambaste its role, saying: "It can be expected to be markedly less independent: although it is stocked with first-class scientists and entrepreneurs, several government administrators also hold seats."

    It ends looking to the future, saying the current government might be dissolved after a confidence vote next month, "which could in itself lead to a change for the better."

    But it adds that "in any circumstances, Canada's leading scientists can be public advocates, pointing to the examples of other countries in urging the government of the day to boost their country into a position of leadership rather than reluctant follower."

    In a letter of rebuttal to Nature, Industry Minister Jim Prentice says that the government is dedicated to "supporting world-leading research.''

    "How anyone can state that 18 bright minds cannot perform the task of one science adviser — who decided to retire after years of dedicated public service — is incomprehensible," he writes.

    Prentice also argues the Harper government considers climate change "to be one of the greatest threats facing the world today.''

    #2102
    Dione Costanzo
    Participant

    re/MEDICARE FOR AUTISM NOW! RALLY

    Map to the Shadbolt Center

    http://www.city.burnaby.bc.ca/__shared/assets/Shadbolt_-_Map1759.pdf

    Sunday, March 2nd, 2008
    2:00 p.m. to 4:00 p.m.
    Shadbolt Centre for the Arts
    6450 Deer Lake Avenue
    Burnaby

    #2103
    Mike & Jean
    Participant

    GREAT NEWS!!!!

    We are delighted to announce the much anticipated book,"The Complete Guide to Autism Treatments – A parent's handbook: make sure your child gets what works!" is now available for sale. The author is FEAT of BC founder, Sabrina Freeman, Ph.D.

    Prior to making decisions about treatment, this book is an absolute must for every parent with a newly diagnosed child.

    The book was inspired by parents of children afflicted with autism. After speaking with several thousands of parents about various treatments and answering similar qustions over and over again, Dr. Freeman realized that parents need a clear way – a guide – to help make appropriate treatment decisions for their child. To that end, Dr. Freeman gives her scientific evaluation of most of the major and minor autism treatments available today, and then personalized the analysis by telling reader whether or not she would use the treatment on her own child. In other words, at the end of the day, how did she apply her understanding of the science to her own child? With this book, it is Dr. Freeman's sincere hope that everyone will be able to evaluate all the current and future autism treatments available. It is cucial to be able to ask the right questions and find the flaws in the science behind every purported treatment, or to find the eveidence, where it exists, that the treatment is effective. At a minimum, understanding the scientific method will protect thousands of children from quackery and, hopefully, provide parents and professionals with the tools to discern those treatments that are effective for children afflicted with autism.

    Section One of the book, scrutinizes the range of treatment options offered to parents of children with autism and uses the tools of the scientific method to evaluate each treatment method so that parents can make sure that the treatment they have chosen for their child stands up to the claims made by the treatment provider. Some of the therapies discussed include but are not limited to: Behavioral Therapies – ABA, Intensive Behavioral Treatment, and the offshoots and distinctions of Intensive Behavioral Therapies such as Positive Behavior Support and Verbal Behavior Therapy.
    School-based (non-behavioral) therapies such as TEACCH and Giant Steps. Child-lead/Parent facilitated therapies such as Floor-Time, Relationship Development (RDI) are covered. Biomedical Therapies such as Diet/Nutrition (Gluten and Casein-free Diets), Secretin and Vitamain B6 and Magnesium are discussed. Speech and Language Therapies such as the Hanen Method and the SCERTS Model are also discussed. And finally – art therapy, music therapy, sensory integraton therapy…and yes, Dolphin-assisted therapy and many more are all thoroughly reviewed. Section Two of the book is designed to provide a background in science for parents or professionals who are newcomers to the scientific method. The book can be used as a reference gride, flipping quickly to a specific theatment of interest, or it can be read as a comprehensive gide to every autism treatment advertised in the marketplace.

    Until Monday, February 25th, the book can be ordered by calling the FEAT of BC office number: 604-534-6956. After February 25th. it can be ordered on-line at skfbooks.com The cost is $29.95 plus tax.

    For those of you who don't know author,Sabrina Freeman…she received her doctorate from Stanford University in 1995. She is a social scientist and author of the popular books, Teach Me Language and Science for Sale in the Autism Wars. She founded FEAT of BC in 1996 and has tirelessly advocated for the rights of children with autism to science-based treatment It is due her vision, dedication and tireless work that BC families now have access to both funding and effective autism treatment. In 2002, she was awarded Queen Elizabeth's 50th Golden Jublilee Medal for advocacy work on behalf of children aflicted with autism.

    In this book, Sabrina once again delivers what parents so desperately need – sound advice and practical answers which are clearly explained. As in all her work – she tells the truth.

    Speaking for myself and others, families in BC and Canada owe Sabrina Freeman a debt which can never be re-paid. Once again Sabrina, thank you so very much!

    #2104

    “Medicare for Autism Now!” Rally

    Another reminder to attend this very important event!

    We are also pleased to announce that Stephan Marinoiu will be speaking via pre-recorded video. He is the father of a 15 year old boy with autism who became so desparate and frustrated that he walked in blizzard-like conditions earlier this month from Toronto to Ottawa to gain the attention of our parliamentarians.

    Also speaking at the rally via pre-recorded video will be Harold Doherty from New Brunswick. He is the father of a 9 year old boy who has autism, an advocate and lawyer. He authors daily in his blog, "Facing Autsim in New Brunswick"

    Bring your children, family, neighbours, friends etc. on:

    Sunday, March 2nd, 2008
    2:00 p.m. to 4:00 p.m.
    Shadbolt Centre for the Arts
    6450 Deer Lake Avenue
    Burnaby

    Why should you attend?

    • Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families are still bankrupting themselves in order to provide treatment for their autistic children.

    • The current and limited funding provided through the provincial government’s social services ministries could evaporate tomorrow with the stroke of a bureaucrat’s pen. No legislation exists within these ministries to protect or enshrine our children’s medically necessary treatment.

    • In 30 years of “advocacy”, the only two initiatives which have achieved ANY success for our children and families has been litigation, and more recently, focused political action. Both were brought by the members of FEAT of BC – a 100% volunteer organization.

    • Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. It is time for the Federal Government to act! We need to let those who govern and those who wish to govern know that they are going to be held accountable at the ballot box in the next federal election.

    Who should attend?

    You – and every fair-minded Canadian you know!

    Children with autism suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sakes, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

    Featured speakers will include:
    Dr. Sabrina Freeman – Executive Director, FEAT of BC and parent
    Jean Lewis – Director, FEAT of BC and parent
    David Chan – Director, Autism Society of BC, FEAT of BC and parent
    Dubravka Skrijelj – FEAT of BC member and parent
    Dr. Glen Davies – Clinical Director – ABLE Developmental Clinic
    Dr. Melvin deLevie – Pediatrician
    Beverley Sharpe – FEAT of BC member and parent
    Louise Witt – Director, Autism Society of BC, FEAT of BC and parent
    David Marley – FEAT of BC member and Political Strategist

    Please RSVP to info@featbc.org and forward this notice to anyone you think will be interested.

    FEAT of BC: “ To see justice is done”

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