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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 - 541 through 550 (of 2,008 total)
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  • #2465
    Bev Sharpe
    Member

    Top of pagePrevious messageNext messageBottom of page Link to this message By Bev Sharpe (Sharpe) on Monday, May 24, 2010 – 12:31 pm:

    This Wednesday, May 26th. Paul Caune, executive director of Paladin Advocacy League (PAL) and Jean Lewis, former FEAT of BC director and co-founder of Medicare for Autism Now, will be guests on the Bill Good Show. They can be heard between 10:30 and 11:30 a.m. on CKNW 980 AM. Please tune in to hear Paul and Jean describe the events which inspired the creation of PAL, and how PAL intends to advocate for the rights of all British Columbians with disabilities. If you can, call in and join the discussion.

    Beverley

    #2466
    Bev Sharpe
    Member

    By Bev Sharpe (Sharpe) on Monday, May 24, 2010 – 12:09 pm:

    By Bev Sharpe (Sharpe) on Monday, May 24, 2010 – 12:07 pm:

    Attention all FEAT parents and supporters!

    Please see the following information and invitation from Paladin Advocacy League of PAL.

    You are all invited to PAL's launch event this Saturday, May 29th. PLEASE NOTE THE TIME CHANGE…IT WILL BEGIN AT 2:30 PM as opposed to 1:00

    I, along with former FEAT of BC director, and founder of Medicare for Autism Now Jean Lewis, are on the PAL board of directors.

    Like FEAT of BC, PAL is a 100% volunteer advocacy organization.

    We look forward to seeing you on Saturday.

    Beverley

    Are the following words true for you?

    “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on mental or physical disability” Section 15 of the Canadian Charter of Rights and Freedoms.

    If you are a Canadian who has been discriminated against due to a mental or physical disability, please read on….

    Lack of effective public policy and political will has allowed Canadian institutions at all levels to deny Canadians with disabilities equal access to full citizenship as guaranteed in our Charter. Despite what our politicians tell us and the rest of the world, systemic discrimination is an everyday reality in Canada for most of us living with a disability.

    The way to right this wrong is through real advocacy, political will and law.

    The Paladin Advocacy League (PAL) is a recently formed not-for-profit society which advocates for public policy changes which will provide Canadians with disabilities equal access to the equality provisions of our Charter….actions speak louder than words.

    We intend to put our founding principles into action by:

    1. Advocating for public policy changes which will enforce the equality provisions of the Charter of Rights (Section 15) creating practical force and effect for all British Columbians with a disability.
    2. Advocating for portable, consumer-driven individualized funding for British Columbians with disabilities.
    3. Advocating for government-funded legal counsel for test cases.

    Canadians with disabilities are also Canadian citizens with the responsibility to vote and make clear to our politicians and bureaucrats that it is nothing more than reasonable to expect equal rights in Canada in the 21st century!

    We want to meet with you to talk, listen, discuss, plan, laugh…and, of course, eat cookies! Coffee will also be served.

    Please join the Board of PAL on:

    Saturday, May 29th
    1:00 – 3:00 p.m.
    Collingwood Neighbourhood House,
    Program Room, 2nd. Floor,
    5288 Joyce St., Vancouver
    (two blocks south of the Joyce Sky Train station)

    Everyone is welcome, particularly Canadians with disabilities, their families and supporters.

    Sincerely,

    Paul Caune

    Rsvp info….please forward to other interested folks etc….

    #2467
    Jenn Ralph
    Member

    Sorry – I have no idea why my last message posted so many times…

    #2468
    Jenn Ralph
    Member

    Missouri Legislature Passes Insurance Coverage for Autism

    globe-democrat.com is.gd/c6xsG

    Missouri families with children on the autism spectrum disorder will soon be guaranteed that health carriers will provide coverage for the diagnosis and treatment of autism spectrum disorders. The Missouri General Assembly today gave its final approval to House Bill 1311. The measure, handled by Sen. Scott T. Rupp, R-St. Charles, and Sen. Eric Schmitt, R-Glendale, now moves to the governor’s desk for his signature to become law. The bill, if approved by the governor, would take effect August 28.
    Rupp noted that autism is the only disorder out of the top 10 childhood neurobiological disorders that is not covered by health insurance.
    “It’s been a long road to get to this point. This is an important day for Missouri families that struggle with autism,” said Rupp. “The legislation we passed today is fair for everyone, and most importantly, it gets families the help they need."
    Schmitt has been a strong supporter, working to advance the measure through the legislative process. He has also shared his family’s personal experiences with his colleagues regarding his young son, Stephen, who falls on the autism spectrum.
    “Children on the autism spectrum deal with so many challenges each and every day,” Schmitt said. “These proven therapies are the difference between whether a family can go to a restaurant without having to leave early, the difference between a child having meaningful friendships. We owe it to these families to give their children the opportunity to reach their full potential. Put simply, this bill is the right thing to do and the right time to do it."
    The bill requires most health carriers that issue or renew health benefit plans to provide coverage for diagnosis and treatment of individuals with autism. It would restrict health carriers from refusing to issue or renew coverage based solely on the fact of an autism diagnosis. The proposed insurance coverage would include a physician or psychiatrist’s referral of ABA (Applied Behavior Analysis) therapy — up to $40,000 per year for individuals under the age of 21. A cost-of-living adjustment has been included to adjust the cap for therapy services in coming years.
    Senate Leader Charlie Shields, R-St. Joseph, said early diagnosis and intervention is reported as the key to making sure children on the spectrum can have the best quality of life possible.
    “We have worked to make prevention and early diagnosis a cornerstone of health care in Missouri,” Shields said. “By passing this bill, we are making sure the same is true for these children."

    #2469

    Are these words true for you?
    “Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on mental or physical disability” Section 15 of the Charter of Rights and Freedoms.
    Lack of effective public policy and political will has allowed Canadian institutions at all levels to deny Canadians with disabilities equal access to full citizenship as guaranteed in our Charter. Despite what our politicians tell us and the rest of the world, systemic discrimination is an everyday reality in Canada for most of us living with a disability.
    The way to right this wrong is through real advocacy, political will and law.
    The Paladin Advocacy League ( PAL ) is a recently formed, not-for-profit society which advocates for public policy changes which will provide Canadians with disabilities equal access to the equality provisions of our Charter. Actions speak louder than words.
    We intend to put our founding principles into action by advocating for:
    1. Public policy changes which will put the equality provisions of the Charter of Rights and Freedoms and the Convention on the Rights of Persons with Disabilities into practical force and effect for all British Columbians with a disability.
    2. Portable, consumer-driven, individualized funding for British Columbians with disabilities.
    3. Government-funded legal counsel for test cases.
    Canadians with disabilities are also Canadian citizens with the responsibility to vote and make clear to our politicians and public servants that it is nothing more than reasonable to expect equal rights in Canada in the 21st century.
    We want to meet with you to talk, listen, discuss, plan, laugh and, of course, eat cookies! Coffee will also be served. Everyone is welcome, particularly Canadians with disabilities, their families and supporters. Please meet with the Board of PAL on:
    Saturday, May 29th, from 1:00 pm – 3:00 pm
    Program Room, 2nd Floor, Collingwood Neighbourhood House
    5288 Joyce St., Vancouver (two blocks south of the Joyce Sky Train station)
    RSVP
    To palsharks@yahoo.ca
    Or call Paul Caune (604-928-1644)
    Or visit our Facebook Group page PAL: the Paladin Advocacy League

    #2470
    Barbara Rodrigues
    Participant

    RE: Message from Minster of Health World Autism Awareness Day

    Thanks for posting that Jemma – same old bs – just dished up to us again <sigh> I agree with your sentiment exactly.

    Barbara

    #2471

    Thanks Jemma for that post. I find the conclusion of this to be absolutely disgusting. Put an ASD kid in her family and watch these politicians scramble to get the very best care out there for their kids. Suddenly it becomes "their" problem. But for now, it is OUR problem.

    I think our kids are fortunate to have us, they don't have anyone else. What is sad to know is when parents contemplate suicide or hunger strikes and still there is James Delorey from Nova Scotia but no cause to fund ABA

    #2472
    Jemma Lee
    Participant

    Here is some news from south of the border.

    Fifteen states have enacted autism insurance reform legislation. Many others are expected to vote on similar legislation this year…

    Unprecedented Week for Autism Insurance Reform As Three More States Act To End Discrimination Against Children With Autism
    http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8146949

    As opposed to hiding behind "jurisdiction issues", the federal government is also making progress…

    U.S. House Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform
    http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8107177

    We can expect a lot more Autism Refugees going south. I know we are a nation with great hockey players, but patriotism means nothing when you're watching your kid disintegrate.

    #2473
    Jemma Lee
    Participant

    Here is World Autism Awareness Day Message from Leona Aglukkaq, Minister of Health:

    http://www.hc-sc.gc.ca/ahc-asc/minist/messages/_2010/2010_04_01c-eng.php

    Sounds familiar? This is the same script that has been used a thousand times to tell us "we need to learn more about the causes of ASD and the most effective treatments and interventions BEFORE THE GOVERNMENT DOES ANYTHING TO HELP."

    I wish Aglukkaq would explain the following:

    1. Unlike numerous other disorders, it's wrong to provide INTERVENTION for autism until you know the CAUSE?

    2. The on-going search for the MOST effective treatments somehow disallows the provision of ANY treatment?

    Instead of insulting my intelligence, I would rather just hear her say, "please understand parents of autistic children have too little political influence to be worth our attention."

    #2474
    Dione Costanzo
    Participant

    Once again let's look to the American's and what they are doing with health care reform (top of the news on CNN). Here is a story of parents and their struggle to get insurance for their son with autism:

    http://www.cnn.com/video/#/video/health/2010/03/22/intv.hcr.hawkins.family.cnn?hpt=C2

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