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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 - 851 through 860 (of 2,008 total)
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  • #2045

    Very sad story, Jemma.
    I am always sickened by the fact that CLBC (Community Living BC) never seem to lessen the anguish or stress on parents or their special needs children. If anything they make our lives more stressful. This has certainly been my experience.
    It is time for the money to follow the child and his/her caregiver and for the agencies that make SOOOOO much money on the backs of our children to PROVE to us that THEY are the ones worthy of providing services to US.
    Only when we, the parents, have the say over how the funding is spent will there be adequate services for our children.
    Thanks for posting this story Jemma!

    #2046
    Jemma Lee
    Participant

    Instead of funding adequate treatment, this is how the government will spend money for your child.

    Jemma

    ———-

    Autistic son locked up in house contaminated by grow-op:

    http://www.cbc.ca/canada/british-columbia/story/2008/04/07/bc-disabledgrowop.html

    #2047
    Andrew Kavchak
    Participant

    Funny how the government funds some projects but ignores what the project recommends…

    __________________

    April 8, 2008 MONTREAL GAZETTE PAGE: A6

    Guide will help spot autism earlier, foundation says

    Aim is to start treating children sooner. Quebec urged to 'deal with ridiculously long waits'

    CHARLIE FIDELMAN, The Gazette

    With autism reaching alarming proportions, a Montreal organization is set to publish national guidelines designed to improve early detection.
    Developed with a federal government grant and the help of leading autism experts, the guide, published by the Miriam Foundation, is aimed at professionals, caregivers and parents to help assess children quickly so treatment can begin early.

    It's not yet clear whether the rate of autism – estimated at one in 165 children – is on the rise because better screening and wider definitions of the disorder are catching more cases.

    "But the issue is how the government is going to deal with the ridiculously long wait lists on both on the diagnostic and services side," said Warren Greenstone, executive director of the Miriam Foundation, a non-profit group that helps autistic individuals and people with other disabilities.

    Complications include severe language and social impairments and unusual, repetitive behaviours.
    In Montreal alone, 760 children are stuck waiting for an evaluation.
    They wait twice – first for the assessment, then for publicly funded therapy.

    "No parent wants to waste a day," Greenstone said.

    Distributed to pediatricians, the 90-page guide will be accompanied by brochures and posters as a quick reference to alert parents that they may need to speak to a specialist. An on-line version will be posted at the foundation's website. http://www.autismcentral.ca

    The foundation also launched a six-month computer pilot project with 20 Montreal families currently on a wait list for an evaluation. These families are using AutismPro, an online interactive program that trains parents to provide treatment at home.

    "We want to evaluate how effective it is for the children and the parents," Greenstone said.
    Early therapy can have a huge impact on development, said Louis Côté, director of planning at the Montreal Health Agency, which is looking at improving services with an additional $200,000 this year for behaviour therapy at five rehabilitation centres.

    Also, the agency is working on fast- tracking children suspected of having autism or developmental disorders.

    "The sooner we intervene, the better," Côté said. To that end, the agency launched a $480,000 pilot project this fall. About 90 children suspected of having an autism disorder will be directed into an early stimulation program while they await a final diagnosis.
    The program is expected to start in the spring at three community health centres.

    Outlying regions have been allocated funds to open their own evaluation services, Côté said.
    For early stimulation programs, call the West Montreal Rehabilitation Centre, 514-363-3025, and ask for the access-to-services department.

    The Pat Roberts Centre offers early stimulation for a fee. Call the West Island Association for the Intellectually Handicapped, (514) 694-7090, Local 14, or visit http://www.wiaih.qc.ca
    cfidelman@thegazette.canwest.com

    Soundoff

    Are you a parent of a child with autism? What more needs to be done to help ? What obstacles have you encountered? What methods have you developed to help your autistic child? Share with us at montrealgazette.com/soundoff

    #2048
    Shiao
    Participant

    Hi Monika,
    Just wonder if you can give us a bit more info on the Home Owner Grant, and how to applied for it. Some one told me if the OWNER of the property has some kind of disability, then the discount can be applied. But in our case, can we applied for the grant since technically, we (not our child) owns the property. Thanks in advance.

    look4help2@yahoo.ca.

    By Monika Lange (Lange) on Thursday, April 3, 2008 – 11:59 am:
    About the disability tax credit, I just want to make sure everyone knows that if you qualify for the tax credit, you also are able to pay reduced municipal property tax. You would pay the Over 65 tax amount. You indicate you qualify for this credit on the back of your Home Owner Grant tax form.

    #2049
    Andrew Kavchak
    Participant

    And now a member of the UK House of Lords is supporting the call for a World Autism Strategy…

    _____________
    http://www.bloggernews.net/114954

    Baroness Uddin YouTube Film for UN World Autism Day

    Posted on April 4th, 2008
    by autismnews in All News, Blogosphere News, Breaking News, Education News, Entertainment, European News, North American News, The United Nations, UK News, US News, World Politics
    Read 70 times.

    (London, UK) A film highlighting the call on autism by the Baroness Uddin of the House of Lords in the UK Parliament, was released in London on 2nd April. The film was released on the You Tube Channel, by Media Eye Productions, to mark the first global autism day.

    World Autism Awareness Day was declared on Wednesday 2nd April by the United Nations General Assembly in New York – the resolution was backed by The State of Qatar. The United Nations Secretary-General, Ban Ki-moon fully supported the day.

    Baroness Uddin said that a United Nations Conference on Autism in 2009 ‘is a must’ and supported the call for the UNSG Ban Ki-moon to launch a ‘world autism strategy.’

    To watch film on Baroness Uddin speak out on autism, to mark the United Nations World Autism Awareness Day, please access youtube:

    http://www.youtube.com/watch?v=rnrFTsWR3TU

    #2050
    Andrew Kavchak
    Participant

    Hi Folks,

    You know how the federal government keeps ignoring the calls for a National Autism Strategy, saying that "it's provincial", while at the same time funding all kinds of other national health strategies (e.g. cancer, etc.)…well, Senator Callbeck asked a question in the Senate a while ago about the "National Pharmaceutical Strategy". Below is a government reply regarding how it works…
    ______________
    Senate Hansard
    Thursday, April 3, 2008

    Delayed Answer to Oral Question

    Hon. Gerald J. Comeau (Deputy Leader of the Government): Honourable senators, I have the honour to table a delayed response to an oral question raised by Senator Callbeck on February 26, 2008, concerning health, the proposed national pharmaceutical strategy.

    Health

    Proposed National Pharmaceutical Strategy

    (Response to question raised by Hon. Catherine S. Callbeck on February 26, 2008)

    The National Pharmaceuticals Strategy (NPS), which was agreed to by First Ministers as part of the 2004 Health Accord, targets issues such as affordable access, appropriate use/ prescribing, pricing, safety and effectiveness. The Strategy is ambitious, and the first phase laid the groundwork. The NPS was never intended to be a vehicle to negotiate increased federal funding for drug coverage, which is a provincial and territorial responsibility.

    The federal government provides significant funds to ensure the sustainability of the whole health care system through the Canada Health Transfer, which grows at 6 per cent per year. In 2004, the federal government provided an additional $41 billion to provinces and territories to develop and implement a 10-year plan to strengthen healthcare, including pharmaceuticals, according to provincial and territorial priorities.

    Our emphasis with provinces and territories continues to be on realizing efficiencies in our system as a result of our investment, so that public resources can be targeted most effectively. Efficiencies could be gained through better generic drug pricing, national purchasing strategies, better prescribing practices and more accessible knowledge on drug safety and effectiveness. We are working with provinces and territories under the NPS and other initiatives to address these issues.

    For example, a business plan has been completed, which proposes a model for the creation of a pan-Canadian virtual network of centres of excellence in post-market pharmaceutical research to strengthen the evaluation of safety and effectiveness of drugs based on their use in the real world. This report is available on Health Canada's website.

    To address issues of affordable access, the Strategy calls for catastrophic drug coverage options to be developed and analyzed. The NPS neither said nor implied a commitment to new funding from the federal government to expand coverage of catastrophic costs. The analysis of options began in phase 1 and was refined in the next phase, as directed in the 2006 NPS progress report. Provinces and territories may utilize this analysis to inform improvements in drug coverage for their residents. In fact, three provinces (NL, SK, NS) recently introduced improvements to their catastrophic drug coverage.

    In addition to work on the NPS, the federal government has taken concrete steps to improve the safety of drugs, including a significant investment of $113 million over the next two years for the recently announced Food and Consumer Safety Action Plan.

    The Government of Canada continues to work with provinces, territories and all stakeholders to improve access to a quality health care system, including access to needed drug therapies, that is sustainable and meets the needs of Canadians.

    #2051
    Monika Lange
    Member

    There is something else I want to make sure you should know about the disability tax credit… you can apply for it retroactively (up to 7 years in the past, I think?). So if your kid was diagnosed in 2000, you can get reassessed and get the credit for each of those years. This works for Federal/Provincial taxes, but I believe not for municipal property tax. But you can phone City Hall and ask.

    #2052

    Monika,
    Thanks for the info.
    I just called our municipal property tax dept. and they said I needed to answer the questions for eligibility. They will mail the form to me. Any tips/ recommendation on answering the questions so that it can go through properly?

    #2053
    Monika Lange
    Member

    About the disability tax credit, I just want to make sure everyone knows that if you qualify for the tax credit, you also are able to pay reduced municipal property tax. You would pay the Over 65 tax amount. You indicate you qualify for this credit on the back of your Home Owner Grant tax form.

    #2054
    Barbara Rodrigues
    Participant

    Amber:

    Years back – when I filled out the disability form – we also put in for deductions for treatment as there was no funding back in those days so you paid out of pocket 100%. Anyhow – Federal Tax fought me on the expense deductions but after appealing and winning that -they then sent me a nasty letter saying if I thought ABA was so great that my son would not get the disability credit and would have to be reevaluated at the age of 12. Unfortunately at the age of 12 -he still qualified for the disability credit but it still caused added stress as he had to be reevaluated by the drs. etc.

    I think it's quite ignorant that the Federal Government would ask such a riduculous question as when do you expect your little one to be recovered. Did you keep a copy of the form the dr. filled out? Maybe go over it and see if what it says. Other than that I think you have to answer the questions (anyone else with tax law experience correct me if I am wrong). I am sorry you have to go through this -parents have enough to deal with without added stresses. Good luck.

    Barbara

Viewing 10 replies - 851 through 860 (of 2,008 total)
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