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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 - 1,001 through 1,010 (of 2,008 total)
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  • #1740
    Mike & Jean
    Participant

    Attention Everyone!….this is enormous….Eugene Levy says "Medicare for Autism Now!"…

    FEAT – Ontario
    Families for Early Autism Treatment
    June 11, 2007
    FOR IMMEDIATE RELEASE
    ACTOR/COMEDIAN EUGENE LEVY GETS SERIOUS ABOUT AUTISM
    Celebrity Speaks Out on Need for a National Autism Strategy
    Toronto – Canada’s highly acclaimed actor, director and screenwriter, Eugene Levy, is departing from his traditional funnyman role,
    but this time there are no scripts, no directors and no film cameras in sight.
    “I feel extremely passionate about the need for a National Autism Strategy”, states Levy, who has signed on as a spokesman for
    the cause and will be teaming up with Senator Jim Munson for a p r ess conference in Toronto at 10:00 am on Wednesday, June
    13, 2007 at the Intercontinental Toronto Yorkville Hotel (Portman Room) .
    “Canada is blessed in so many ways but somehow some of our most vulnerable citizens are being wrongfully neglected,” Levy says.
    “It is time to address this wrong and provide these individuals with the same access to medically necessary treatment that the rest
    of us enjoy throughout our lifetimes under our country’s allegedly universal health care system.”
    Autism is included in the World Health Organization’s International Classification of Diseases, Revision 10 (ICD-10) and afflicts
    individuals of all races, ethnicities and socioeconomic backgrounds. It is fast becoming a North American epidemic of staggering
    proportions. According to the world-renowned US Centers for Disease Control, one in every 150 children (one in every 94 boys) is
    today being diagnosed with an autism spectrum disorder. It is more common than pediatric cancer, diabetes and AIDS, combined.
    While there is no cure for this mysterious yet tragic neuro-genetic condition, proven effective, science-based treatment for autism
    does exist. It is called Applied Behaviour Analysis (ABA), also known as Intensive Behavioural Intervention (IBI).
    Norrah Whitney, the mother of an autistic son and Executive Director of Families for Early Autism Treatment (FEAT) – Ontario,
    states, “Many are forced into privately funded treatment, with a price tag of $70 to $80 thousand per year. Families are losing
    their homes and cashing in their retirement savings yet are still not able to sustain treatment for their children. This is nothing
    other than a two-tiered healthcare system”, says Whitney, who in an ironic twist, is the granddaughter of the late John Leo
    Whitney, one of the founding architects of OHIP.
    “We need more than a dedicated page on a Health Canada website, or a ‘stakeholders’ symposium’,” states Brenda Deskin, a longtime
    advocate for people with autism and plaintiff in the well-known Deskin-Wynberg court action. “We are seeking equal treatment
    under the law — the same approach that has been taken when our country faced other health-related emergencies. Canada has a
    crisis on its door-step, one that demands a concrete and immediate plan of action, one that includes the provision of publicly
    funded, evidence-based treatment for people of all ages afflicted by autism.”
    Levy will be sharing his personal views on autism. The event will also mark the unveiling of a practical, multi-faceted strategy that,
    if implemented by the federal government, would bring autism under Medicare and end the discrimination against people with
    autism in Canada.
    “It is only when ABA – the most effective, science-based treatment for autism – is brought under the Medicare umbrella and made
    available to Canadians who suffer from this core health need, that we can rightfully claim to be a nation committed to the values of
    universal healthcare,” states Senator Jim Munson.
    -30-
    For further information contact:
    Brenda Deskin: 289-439-6003 Norrah Whitney: 416-779-1265
    Or visit http://www.featontario.org
    Media Note: High resolution images of Eugene Levy and of the Deskin and Whitney families will be available online at
    http://www.featontario.org immediately after the press conference.
    It is with the utmost of appreciation that the event organizers recognize the Intercontinental Hotel for the most generous donation of
    their facilities for this event.

    #1741
    Isaac
    Participant

    Hello everyone,

    Bill Good, of CKNW radio, did an autism-related Op-Ed piece recently.

    The salient excerpt:

    “A warning to any politician, of any party … be prepared for a very determined battle in your riding, if you continue to ignore the plight of families who struggle with autism.” [CKNW, May 26, 2007]

    The opinion piece is worth hearing in its entirety.

    http://youtube.com/watch?v=YEtCIt9RPbo

    Isaac

    #1742
    Dave Collyer
    Member

    Hi all,

    FYI: A number of newspapers/news services seem to have picked up on the Jean Lewis and Roxanne Blacks' FEAT of BC tour out east.

    CBC news

    CTV News

    Canada.com

    …and many others seem to be picking up on the CP wire… (ie http://www.brandonsun.com/story.php?story_id=55730 , http://calsun.canoe.ca/News/National/2007/05/27/4211713-sun.html , http://thechronicleherald.ca/Metro/837846.html ).

    … and East Coast Bloggers… http://autisminnb.blogspot.com/

    #1743
    Dave Collyer
    Member

    Hi all,

    FYI: A number of newspapers/news services seem to have picked up on the Jean Lewis and Roxanne Blacks' FEAT of BC tour out east.

    CBC news

    CTV News

    Canada.com

    …and many others seem to be picking up on the CP wire… (ie http://www.brandonsun.com/story.php?story_id=55730 , http://calsun.canoe.ca/News/National/2007/05/27/4211713-sun.html , http://thechronicleherald.ca/Metro/837846.html ).

    … and East Coast Bloggers… http://autisminnb.blogspot.com/

    #1744
    Dave Collyer
    Member

    Hi Monika,

    Given that you have asked a very specific question… Here is one… Random Controlled Trial (gold standard):

    Aldred, C., Green, J., & Adams, C. (2004). A new social communication intervention for children with autism: Pilot randomized controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420–1430.

    Interesting work… In essence parents were trained in reciprocity skills and to respond to their children's early efforts to communicate. From my vantage point it appears that the parents were trained to deliver the intervention based on a premise that is akin to service delivery/interventions in the field of educational literacy interventions (ie teach parents to read to children and literacy deficits improve…the parents directly deliver the intervention not the professionals).

    The results:
    1. Increases noted on the ADOS for the realms of reciprocal social interaction, social engagement, social rapport, social responses, & spontaneous initiation of social interaction.
    2. Reported improvement in language development and expressive and receptive language skills on the MacArthur Communication Development Inventory – this is a parentally reported (self report) tool so I suppose there could be a biased observer effect at play… or not as the control group did not report improvements but it might be looked at in follow up studies….

    I suppose that one limitation of this study is that it is not an entire "package" in that it does not address directly other issues (problematic behavior) or other deficits (self care)… but one might assume that some of these issues would be addressed or decreased indirectly by improving communication… but maybe more work is needed to document this…. still very interesting research IMO.

    Dave.

    #1745
    Monika Lange
    Member

    I sent the message below on May 9 and haven't seen anything posted yet. Should anyone have any scientific evidence regarding the efficacy of treatments other than ABA, please post it ASAP. Thank you!

    By Monika Lange (Lange) on Wednesday, May 9, 2007 – 11:26 pm:
    I'm always looking for the best treatment for my child. Someone recently mentioned that there are therapies out there that work "just as good" as ABA and that data exists to support that. I would very much appreciate getting any data that exists on the latest and greatest, so would anyone having scientific data supporting the other therapies please post it? Thank you!

    #1746
    Sam Yassine
    Member

    FEAT BC-News Release

    FEAT BC tour to Ontario and Maritimes is welcomed by autism advocates nation wide. A press release has been distributed to all media outlets across the nation.

    Autism advocates across the country are grateful for FEAT BC determination and tireless work to secure Medicare for autism now.

    We are determined to continue the fight and we will not let our children down. It is our parental responsibility to protect our children and it is our children right to include Medicare for autism now.

    We will not go away and we will not compromise. It is time to choose between our children and Steven Harper government.

    Sam Yassine

    #1747
    Sam Yassine
    Member

    News Release

    May 22, 2007
    For Immediate Release

    “FEAT BC goes coastal” tour to Halifax

    Vancouver, B.C. – Jean Lewis, founding director of FEAT-BC (Families for Early Autism Treatment of BC) today announced that she and other representatives of FEAT-BC will be travelling to Halifax on Saturday, May 26th for a gathering of parents of autistic children and their supporters from across the Maritimes.

    “One purpose of this event is to recognize the leadership of MPs Shawn Murphy, Andy Scott, and Peter Stoffer, as well as that of Senator Jim Munson, in the fight to get Medicare coverage for autism now,” said Lewis. “These men have distinguished themselves among Canadian parliamentarians with their dedication to curtailing this emerging health care crisis. Parents of autistic children and supporters look forward to thanking them personally.”

    The principal purpose of the gathering is to organize a team of FEAT activists for deployment during the upcoming federal election in select constituencies across the Maritimes.

    On the way to Halifax, stops are planned in Ottawa and Toronto for meetings with Ontario-based parent activists.

    At 11:00 a.m. on Thursday, May 24th, a news conference will be held in the Charles Lynch Press Room on Parliament Hill.

    FEAT-BC (Families for Early Autism Treatment of BC) is a not-for-profit volunteer organization of parents and professionals working towards universal access to effective, science-based treatment for all Canadians diagnosed with autism in Canada.

    -30-

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

    #1748
    Andrew Kavchak
    Participant

    Autism mentioned twice in the House…including a tabling of the autism treatment petition! This must be the 86th time, although it has been a while. Perhaps a new flurry of tablings might help keep the item on the front burner?
    ___________________________
    House of Commons
    Hansard,
    Friday, May 18, 2007.

    ORAL QUESTIONS

    Summer Jobs Program

    Mr. Michael Savage (Dartmouth—Cole Harbour, Lib.):

    Mr. Speaker, yesterday the human resources minister admitted what Liberals have been saying in this House for a long time. His new summer grants program is a disaster. It is a disaster for students and for scores of not for profits across Canada. His own ministers are now saying the same thing, one in New Brunswick as we speak.

    The previous program was working. This new one is not, denying autism organizations, seniors and disability groups, youth recreation, child care agencies, and thousands of others.

    Will the minister adjust his criteria today and follow the Leader of the Opposition, who yesterday announced that a Liberal government would immediately restore full funding to the summer career placement program?

    Hon. Monte Solberg (Minister of Human Resources and Social Development, CPC):

    Mr. Speaker, I want to remind the member that the entire $77.3 million that was dedicated last year to not for profits has been dedicated to not for profits again this year. That is an important point.

    I also want to remind him that every year groups must apply and demonstrate that they are providing good quality jobs for people. The point of this is to provide jobs for students.

    As I said yesterday, in some cases there are sympathetic groups who appear on the face of it to meet the criteria, but have not been approved. We are looking at those groups.

    ___________________________

    Petitions

    Autism

    Mr. Peter Julian (Burnaby—New Westminster, NDP):

    Mr. Speaker, the second petition calls upon the government to amend the Canada Health Act and corresponding regulations to include IBI and ABA therapy as a medically necessary treatment for children with autism. The petition is signed by residents of Burnaby—New Westminster and other areas in the Lower Mainland of British Columbia.

    #1749
    Andrew Kavchak
    Participant

    House of Commons
    Hansard
    Thusday, May 17, 2007

    Criminal Code

    The House resumed consideration of the motion that Bill C-10, An Act to amend the Criminal Code (minimum penalties for offences involving firearms) and to make a consequential amendment to another Act, be read the third time and passed.

    Mr. Paul Szabo (Mississauga South, Lib.):

    Mr. Speaker, I know that the member is quite familiar with FASD, fetal alcohol spectrum disorders. She also knows that there is a prevalence of criminal activity among those who suffer from that mental disability and, indeed, mental disabilities in general.

    I wonder if the member would care to comment on the fact that rehabilitation would not be applicable in terms of these particular persons who may be convicted of crimes. Exactly how do we help them if they are automatically subject to a mandatory minimum sentence to an institution, where rehabilitation is the activity that goes on during that period? Obviously there are cases where incarceration in the general prison population is not applicable. She may want to comment.

    Ms. Penny Priddy:

    Mr. Speaker, I would be pleased to do that. There are many pieces to this, but it goes back in part to the fact that appropriate supports need to be in place much earlier. I know that the member is very familiar with this and he knows this. Those kinds of appropriate supports for people with FASD, FASE and autism need to be in place much earlier.

    I am still waiting for the autism strategy from the government and I am still waiting for a FASD strategy from the government, but surely we do not wait until those folks find themselves in a position of having picked up a gun. That is where those prevention programs are so critical.

    That is why without those prevention programs this will not be a successful initiative. We must have those in place.

    It does not mean that I will not support this bill, but I am very vocal in saying that we need those supports in place early on. We should never even find ourselves in the position of having someone with a severe mental disability, or with FASD or any of the other disabilities we could name, in front of a judge, with the judge having to think about sentencing for somebody who indeed may not be able to reason that out.

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