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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 - 1,151 through 1,160 (of 2,008 total)
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  • #1667
    Sam Yassine
    Member

    Hi Folks

    More media coverage

    http://www.allheadlinenews.com/articles/7005605216

    Autism Association Of Canada Demands Action On National Strategy

    November 22, 2006 3:59 p.m. EST

    Jacob Cherian – All Headline News Staff Writer
    Ottawa, Canada (AHN) – Tony Clement, the Health Minister of Canada is under fire from families of children with autism and related advocacy groups for not providing a strategy for laying out treatment resources equally across all of Canada's provinces.

    Sam Yassine, father of an autistic child and a Families for Early Autism Treatment advocacy group member, tells CanWest News Service, ''Parents across the board, they are tired of waiting," adding that, ''We need action now. Enough time wasted on raising autism awareness.''

    Clement, in response to the pressure, released a series of small steps intended to disseminate public information and help researchers studying the abnormality.

    Clement said in a news conference, ''Today's new initiatives will contribute to laying foundations to improve our understanding of autism and its prevalence."

    However, there is no agreement between the provincial and federal governments on how to deal with the condition or on what the standard treatment might be.

    Clement responded that the conservative government is "obliged to help unravel the mysteries of the disorder."

    But Yassine emphasizes that the government is slow to take action and that the children and their families are suffering as a result.

    In the meantime, the Autism Association suggests that the national government come up with strategies to strengthen resources and help professionals to ascertain early detection of autism.

    Yassine adds that it is also essential to develop "behavioral intervention programs" to help children and families affected with autism throughout the provinces.

    #1668
    Jenn Ralph
    Member

    This story, forwarded to you by jenn.ralph@shaw.ca, appears on http://www.cbc.ca at the following URL:
    http://www.cbc.ca/canada/story/2006/11/22/autism-reaction.html

    #1669
    Sam Yassine
    Member

    Hi Folks

    I believe today Ottawa rally on Parliament Hill was a turning point in many ways. Well, it was the first time ever we had over 100 parents and supporters participating in a rally and that is good but that is not all.

    I think the most significant change was that parents were really angry and Mr. nice polite parent turned to an angry and vocal giant.

    Andrew kavchak comment on Health Minister yesterday announcement was this is BS. When MP Mike Lake said well let get back to the issue Andrew said this is the issue.

    Dear parents, the time for raising autism awareness, committees and subcommittees is over. Now it is time for action and only action counts. Clement symposium, autism research chair to explore autism and web page on Canada health will not help parents and children desperately waiting for services and support. An MP, MPP and a senator that is still not aware of autism and its challenges does not deserve to be in his/her position. Our children can not wait any more, every day lost is irreplaceable.

    On this notes many thanks to FEAT BC and the folks that took the time and effort to come down to Ottawa. Keep the good fight.

    Cheers
    Sam Yassine
    Ottawa

    #1670

    *************** THANKS!!!! ******************

    On behalf of parents with newly diagnosed kids who are still at the overwhelmed, lost and and bewildered stage of this journey, I would like to thank all of you politically active parents, who have been fighting for years and have made our struggle that much easier. Hopefully at some point, when we learn how to get through the daily struggle, we can all pick up the fight and contribute…..

    #1671
    Andrew Kavchak
    Participant

    Hi Folks,
    Well, the press conference in Parliament's Centre Block and the subsequent rally in front of Centre Block were a success. I don't think we could get our "Medicare for Autism Now!" message out any clearer. There were about 100 people at the rally. Jean Lewis, Roxanne Black, Jennifer Black, Peter Stoffer MP, Peter Julian MP, Blair Wilson MP, Andy Scott MP, Shawn Murphy MP, and Senator Jim Munson all spoke to a roaring crowd. There was lots of media. Special thanks to Jean, Jennifer and Roxanne for making it a success. And a very, very special word of thanks to Sam Yassine for helping to organize and coordinate the rally and circulating the petition.

    Right afterwards Jean went to do a live Bill Goode radio show and I will be interviewed on Radio-Canada in about 30 minutes by a station in Quebec. Tomorrow: Jean appears before the Senate Committee looking into "Funding for Autism Treatment".

    #1672
    Mike & Jean
    Participant

    I strongly suggest that before anyone gets excited about the Clement announcement today that you take a look at this CityTV news piece of Tuesday evening. We do not need any more smoke and mirrors from Ottawa thank you very much.

    http://www.citynews.ca/international/day/11-21-2006_282.aspx

    #1673
    Andrew Kavchak
    Participant

    Press Release and Backgrounder issued by the Federal Government today…
    ____________________

    News Release
    2006-111
    November 21, 2006
    For immediate release

    Health Minister Tony Clement announces new initiatives on Autism Spectrum Disorders
    OTTAWA – The Honourable Tony Clement, Minister of Health, announced today a package of initiatives to improve knowledge and research on Autism Spectrum Disorders (ASD) to help individuals and families facing the challenges of ASD.

    "Canada’s New Government recognizes that Autism Spectrum Disorders is an important concern and is committed to working with our partners – provinces, territories and other stakeholders – on this important issue," said Minister Clement.

    No one knows what causes ASD. There is evidence that genetics plays a role, but more research is needed to better understand patterns of occurrence of ASD and trends over time.

    The federal government already supports research on ASD through the Canadian Institutes of Health Research(CIHR), – which has invested nearly $15 million since 2000 – and knowledge dissemination through the Public Health Agency of Canada's (PHAC) investments in the Centres of Excellence for Children's Well-Being. In addition to those measures, the federal government intends to:

    sponsor an ASD stakeholder symposium in 2007 to further the development of ASD knowledge and dissemination among health care professionals, researchers, community groups, teachers, individuals and family members;

    begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD;

    launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research;

    create a dedicated page on the Health Canada Web site to guide the public to ASD information available through the Canadian Health Network and other resources;

    designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level.
    "We are confident that these initiatives will help to better address the many challenges individuals with Autism Spectrum Disorder and their families are facing," said Minister Clement.

    Minister Clement is also pleased that the issue of ASD has been referred to the Standing Senate Committee on Social Affairs, Science and Technology to provide advice on how individuals with ASD and their families can best be supported.

    -30-

    ——————————————————————————–

    Media Enquiries:
    Carole Saindon
    Health Canada
    (613) 957-1588

    Erik Waddell
    Office of the Honourable Tony Clement
    Federal Minister of Health
    (613) 957-0200

    Public Enquiries:
    (613) 957-2991
    1-866 225-0709

    BACKGROUNDER

    Autism Spectrum Disorder (ASD)
    November 2006

    Autism Spectrum Disorder (ASD) refers to a group of neurodevelopmental disorders that affect the way the brain functions. For many individuals with ASD, this results in trouble communicating with others or difficulty with regular social interactions. Other signs include a tendency towards repetitive behaviours, and unusual or severely limited activities and interests.

    ASD includes autism (also known as autistic disorder), Asperger syndrome and other related conditions. The types of ASD cover a wide variety of symptoms and levels of impairment. ASD develops differently from person to person, and the effects can range from relatively mild to debilitating. Unlike some health conditions, there is no “typical” person with ASD.

    No one knows the cause of autism, although there is strong evidence that genetics plays a role. Ongoing research is investigating many possibilities including genetic influences, pre- and post-natal development, environmental factors and immune deficiencies. ASD is not infectious and cannot be caught. And, ASD is not caused by parents’ behaviour or style of parenting.

    While we do not have national rates for Canada, it is estimated that ASD may occur in about 1 in 160 children. ASD is four times more common in boys than girls. Signs usually appear during the first two to three years of life and the disorder is often diagnosed before the child reaches school age. Diagnosis involves a number of different measures and screening tools, many based on observation by a team of professionals.

    Despite the frequency of ASD, there is much that is unknown about these disorders. More research is needed to better understand the incidence, causes, effective early screening tools, optimal treatments, and hopefully one day, prevention.

    #1674
    Andrew Kavchak
    Participant

    Hi Folks,
    There is no question that autism is on the radar screen in Ottawa…thanks to FEAT BC! Doing the radio talk show this afternoon with Jean was fun. I got a number of calls from people I have not heard from in a long time to say they heard it. Tomorrow I should be on CBC TV morning news at about 6:15 am. Brenda Deskin may be on CBC TV at about 10am. The press conference and rally are going to be fun tomorrow.

    Below is a transcript from yesterday's Hansard that you might find interesting!
    Andrew Kavchak
    Ottawa
    ____________________
    House of Commons
    EDITED HANSARD • NUMBER 082

    Monday, November 20, 2006

    Statements of Members

    Autism

    Mr. Russ Hiebert (South Surrey—White Rock—Cloverdale, CPC):

    Mr. Speaker, it is my pleasure to rise today to recognize some constituents of mine who have travelled to Ottawa this week to raise awareness about autism spectrum disorder.

    Members of the Families for Early Autism Treatment and members of the Autism Society of British Columbia have come to Parliament Hill to meet members of Parliament and inform Canadians about this disorder.

    Autism is a neurological disorder that impairs social interaction and communications skills. Despite autism's sometimes serious impacts, there is treatment available to help many of those affected. For example, applied behavioural analysis therapy has proven beneficial for many autistic children.

    While funding for this therapy is at the discretion of Canada's provincial governments, our new government is proud of the $1.1 billion increase in the Canada health transfer that we have provided in budget 2006. Our government is also proud to invest $3.5 million annually in research into the causes and treatment of autism.

    #1675

    I just received this attachment from Mark Warawa's office.

    Kandi

    Today, Tony Clement, Minister of Health, announced a package of initiatives to improve knowledge and research on Autism Spectrum Disorders (ASD) to help individuals and families facing the challenges of ASD.

    * Canada's New Government recognizes that Autism Spectrum Disorders is an important concern and we are committed to working with our partners – provinces, territories and other stakeholders – on this important issue.

    * We already support research on ASD through the Canadian Institutes of Health Research (CIHR), which has invested nearly $15 million since 2000 – and knowledge dissemination through the Public Health Agency of Canada's (PHAC) investments in the Centres of Excellence for Children's Well-Being.

    * In addition to those measures, we are pleased to announce that Canada’s New Government will:

    * Sponsor an ASD stakeholder symposium in 2007 to further the development of ASD knowledge and dissemination among health care professionals, researchers, community groups, teachers, individuals and family members;

    * Begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD;

    * Launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research;

    * Create a dedicated page on the Health Canada website to guide the public to ASD information available through the Canadian Health Network and other resources; and

    * Designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level.

    * We are confident that these initiatives will help to better address the many challenges individuals with Autism Spectrum Disorder and their families are facing.

    #1676
    Sam Yassine
    Member

    Hi Folks

    Just a thank you note to our guests from BC in Ottawa for what you achieved in the last couple of days.

    The media coverage that you generated is way beyond any discription. Off course more to come tomorow at the press conference and the rally.

    As Jean Lewis put it, Ottawa belong to all. It is the center of all political action and it belongs to all canadians cross the country.

    Minister Clement announcment will have the proper response tomorow at the press conferance and the rally.

    We do not need symposiums, we don't need web sites and most certainly we do not need further delays. We need mediacare for autism NOW.

    Again, thank you FEAT BC. You are a breath of fresh air.

    Sam Yassine
    Ottawa

Viewing 10 replies - 1,151 through 1,160 (of 2,008 total)
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