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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 - 501 through 510 (of 2,008 total)
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  • #2425
    Mike & Jean
    Participant

    Meet Medicare for Autism Now co-founders, Jean Lewis and David Marley, along with broadcast journalist, Bill Good, discuss some of the topics featured in the documentary, "Medicare's Orphans" now scheduled for release in late October. All three live in Vancouver, Canada.

    http://www.medicareforautismnow.org

    This film exposes painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and equality into serious question.

    Please share this link with as many others as possible and ask they do the same. Be sure to send it to your MP and MLA.

    http://www.medicareforautismnow.org

    #2426
    Mike & Jean
    Participant

    Meet Stefan, Bernadette, Lia and Simon Marinoiu. They live in suburban Toronto, Canada. Simon has autism and no longer lives with his family. His devastating situation represents the fate of many autistic children in Canada who are being denied effective treatment. Simon and his family are featured in the just released third trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in October. http://www.medicareforautismnow.org

    The film chronicles the stories of a number of families with autistic children from across Canada, each share the same problem – lack of access to effective autism treatment (ABA/IBI) via our "universal" health care system.

    The film exposes some painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

    This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children, to move the cause forward, and to end health care discrimination in Canada in this generation.

    To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to: http://www.medicareforautismnow.org

    Please forward this link, post it to your Facebook walls, and ask others to do the same. Also – very important – send it to your MLA and MP.

    Thank you for your support.

    Jean

    #2427
    Mike & Jean
    Participant

    Meet Laurie Guerra and her son, Wesley Romey. Laurie is a board member of the Autism Society of BC. They live in suburban Vancouver and are featured in the just released second trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in mid-September.

    The film chronicles the stories of a number of families across Canada, each share the same problem as every Canadian parent with a child with autism – access to effective autism treatment (ABA/IBI)via our "universal" health care system. The film exposes some painful truths about who gets access to health care in Canada, the Canadian governments, both provincial and federal refusal to act, the Supreme Court of Canada's failure to protect our childrens' charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

    This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children and what they need to do to move the cause forward and end health care discrimination in Canada in this generation.

    Please share this trailer with others using any means available.

    Stay tuned for our next trailer where you'll meet the Marinoiu family from Scarborough, Ontario.

    To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to:
    http://www.medicareforautismnow.org

    Your child's future depends on you.

    #2428
    Mike & Jean
    Participant

    Take a few moments to watch the first of four trailers for the upcoming Medicare for Autism Now! documentary which will be released in mid-September.
    Watch it at: http://www.medicareforautismnow.org Spread the word, share with your family and friends, Facebook etc. etc.

    #2429
    J.Graham
    Participant

    If anyone has any information you could give to this Dad, or any help you could offer, please contact him at the email below.

    Thanks,

    Jen

    My name is Derek I am a single father of three wonderful young children, aged 9, 10 and 11; my youngest two have both been diagnosed with severe autism. Though a constant and challenging struggle, I have done my best to protect and nurture them, as I love them so much and have dedicated my life to their achievement of happiness. My youngest child …is a bright and beautiful little spitfire named Ayn. She has and is blossoming so well here at home and has come so far to overcome her obvious disability, she does however continue to struggle and outburst when in other environments, particularly at school. Ayn is naive and unaware of the dangers that exist in the world at large, so when on Sunday she escaped the backyard we were very worried for her safety. With each passing moment the likelihood that something terrible had happened increased, as Ayn should stand out from other children easily and should have been quickly spotted. Fortunately Ayn was discovered two doors down playing in a neighbours backyard, the neighbour had taken an afternoon nap which provided Ayn with the ability to play undisturbed. The challenges I have faced in caring for my daughter have been encompassing and life altering, these challenges are very dynamic and new challenges arise as fast as the old one depart. Now with her discovery of the neighbours nearby trampoline and pool, she will undoubtedly seek to return there, vigilance will be required to face this new found challenge, but it is one which I must now face just as I have with each prior challenge and as i would have to with our future challenges as well. As it stands today I may never get that opportunity. This morning two workers from CPS arrived at my home to request that I "voluntarily" give Ayn over to them (she was at school at the time), if I refused they would simply coercively remove her. There should be no illusions here when someone approaches you and says "give me your child or i'm taking her" you should not pretend that any such choice would be done "voluntarily". They do not argue that she was abused, they do not argue that she was unnurtured, they simply say that as a single father I have an overwhelming amount of responsibilty and workload, and that Ayn's naivity renders her a danger to herself, and due to me having so much to deal with they should remove her in effect to lighten my workload. It is not argued that Ayn was thriving here, it was not argued that Ayn was failing to improve at home, but that her behaviour was self endangering. My little girl is autistic, I am aware that she does not understand the dangers that lurk, I love her and I protect her, when Ayn has a tantrum at school it is me they either call in to calm her or send her home to, when she is injured it is to me whom she turns because she "needs a bandage". The greatest successes this little girl has had were nurtured in the home, she loves it here, she loves her brothers and she loves her Dad, please help me get my little girl back.

    I would be forever in your debt,

    Derek

    iconoclast_ensues@yahoo.com

    http://www.facebook.com/home.php?sk=group_152278868178942&ap=1

    #2430
    Andrew Kavchak
    Participant

    And the latest round of attempts at legislated reasonableness in Ottawa….

    You can follow the Bills’ progress through “LegisInfo” on the Parl.gc.ca website:

    Bill C-218:

    http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5079448

    Bill C-219:

    http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5080253

    Here is the link for Mr. Thibeault ‘s MP profile:

    http://www.parl.gc.ca/MembersOfParliament/ProfileMP.aspx?Key=128626&Language=E

    #2431
    Super Dad
    Participant

    This is not an isolated case. It happens everywhere every day.

    Panorama BBC investigation into abuse at the Winterbourne View Care Home in Bristol:
    http://www.youtube.com/watch?v=8yuPvUHsx1Y
    http://www.youtube.com/watch?v=yLUKYtkRbMA
    http://www.youtube.com/watch?v=-8w3AWTIbkc
    http://www.youtube.com/watch?v=hjXlO4kk6Ms

    #2432
    Nancy Walton
    Participant

    CTV is interested in doing some reporting on challenges in accessing adult and child services, and is looking to interview families whose experiences can help tell these stories.

    Moms On the Move needs you to contact them (address below) if you are willing to be interviewed, if your story has not previously been highlighted in the news media and if you fit the following profiles:

    1) Children's services: Family under severe stress that has contemplated or been forced to place their child (age 0 – 19) in government care due to a lack of access to sufficient respite, early intervention, emergency short-term intensive care and/or other supports that could have helped them cope without giving up the child. CTV is particularly interested in talking to any family whose child has been placed in a group home so please pass this on if you know such a family.

    2) Adult services: Family of an adult who has/is being denied a group home placement and/or other supports and/or who has been forced to move out of a group home and into home sharing against their wishes.

    Please MOMs ASAP and I will connect you with CTV if it sounds like a good fit.

    Being able to tell these personal stories is the most powerful way to explain to the public and to politicians the importance of adequate resources and effective programs to support families of adults with developmental disabilities and children & youth with special needs, so our sincere thanks in advance for the enormous contribution made by those who share their stories.

    momsonthemove (at) telus (dot) net

    #2433
    Mike & Jean
    Participant

    Attention all parent-advocates:

    The "Getting it Done" Advocacy workshop scheduled for this Saturday, April 30th by Medicare for Autism Now! is FULLY BOOKED. We are wait-listing people until Friday afternoon, in case of cancellations

    Due to the exraordinary interest, we anticipate scheduling more workshops in the near future both in the lower mainland and Vancouver Island. Don't be disappointed – stay posted here and at http://www.medicareforautismnow.org for details on future workshops and other Medicare for Autism Now initiatives.

    If you haven't already done so, please go to http://www.medicareforautismnow.org and sign the on-line petition. While you're there, check-out the message board to see who in this election campaign will publicly commit to supporting legislation to include autism treatment under Medicare. Share your own candidates' responses…but…do so before election day!

    Questions about "Getting it Done" Advocacy workshop? Future workshops? Candidate responses? Other Medicare for Autism Now! initiatives?….contact us at mfanow@gmail.com

    We're looking forward to a great workshop – see you all this Saturday!

    Jean and David

    #2434
    Mike & Jean
    Participant

    Hello everyone,

    Today, we launched our new and improved website – http://www.medicareforautismnow.org

    One of the reasons we've done this now is to help and encourage parents and supporters to participate in the current federal election.

    We agree with Get Your Vote On when they say, "The world is run by those who show up…"

    To further the cause of Medicare coverage for science-based autism treatment (ABA/IBI) we suggest you:

    1. Go to http://www.medicareforautsimnow.org click on Support Us and sign the on-line petition.

    2. Click on Election 2011, find your candidates, ask them the question, and most importantly post their responses on the
    our message board.

    Please forward this email and website information along to others and, if you have one, "like it and share it" on your Facebook page.

    Election day is three weeks from today – May 2nd. The time to take action is right now!

    If you have any questions about canvassing candidates, please contact us at mfanow@gmail.com

Viewing 10 replies - 501 through 510 (of 2,008 total)
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