• Creator
    Topic
  • #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 - 11 through 20 (of 2,008 total)
  • Author
    Replies
  • #23638
    Andrew Kavchak
    Participant
    Hello,
    Well, here we go again!  Another media story about people migrating back and forth across this country in search of….anything to help their child with autism.
    What a shame that the federal government (whether Liberal, Conservative, etc.) never recognized and continues, as the last election demonstrated, to avoid taking a leadership role to address this disgraceful situation. Families with autistic children have enough problems without having to deal with cross-country moves in order to access elementary services.  This “scourge of the wait lists” has to stop!
    #23637
    Andrew Kavchak
    Participant

    Hi Folks,

    Toronto parent and MFAN advocate Jamie Peddle has a new YouTube channel where he is starting to post videos about autism advocacy issues relating to our common struggle for MFAN.  Please check it out and spread the link around. Jamie’s likely going to be posting a lot of good videos in the near future. I particularly like the one he posted of him going to pay for ABA treatment for his son with a credit card instead of a health card and asking “What country are we in?”

    https://www.youtube.com/channel/UCIg3BKW2ODDBF86Kraocc6g

     

    #23636
    Andrew Kavchak
    Participant

    Hi Folks,

    So today the Ontario Autism Advisory Panel issued its report to the government regarding changes to the Ontario Autism Program (OAP).

    http://www.children.gov.on.ca/htdocs/English/documents/specialneeds/autism/AutismAdvisoryPanelReport_2019.pdf

    As with the general theme that the Ontario Autism Coalition so smartly promoted in its opposition to the governments’s mishandling of the OAP earlier this year, the central theme is “needs-based services”.  Put in the bigger context, is it not incredible that one should have to advocate for that?  I mean, if kids don’t get what they need, then either it is because the services provided are insufficient (which they certainly are for those on the waiting list), or some other service is being provided which does not address the child’s “needs”.  I can’t recall any community protesting that under Medicare they needed “needs-based services” because presumably, under Medicare, the healthcare system tries to provide the services that meet the needs of people who are ill.  It seems to me that having to ask for “needs-based services” is, at least in part, a consequence of not being in the Healthcare system with Medicare coverage.  I wrote to the panel members and the panel secretary when they started their consultations to make the case for “Medicare for Autism Now” MFAN).

    I just tried to go though the report (64 pages or something) and find some discussion of the MFAN issue.  Nope. Nada. Zip. Not a word. But maybe I missed it.  Maybe it is there somewhere and in my haste I missed it.  If so, please let me know. I can make an error.  I just did not see in my first glance-through. I did see a reference to Ministry of Health (MOH) providing “mental health services”, but we all know that’s not the same thing as ABA treatment for autism.

    So….was this another wasted opportunity by the community?  If so, what’s going on?  Was this a set-up by the government where advocates who were known not to be MFAN supporters were chosen?  Were the terms of the panel mandate such that they were not supposed to even consider the subject?  Or could it be that truly no one in the community raised the issue (besides me and possibly a small handful of other parents)? What is going on?

     

    #23625
    Andrew Kavchak
    Participant

    Hi Folks,

    Interesting story at CTVNews.ca about autism and the election.  It seems that some of our historic themes on this board are starting to get some traction in others part of the autism community…

    https://election.ctvnews.ca/parties-autism-strategies-leave-advocates-underwhelmed-1.4645137

    #23624
    Andrew Kavchak
    Participant

    Hi Folks,

    Conservative leader Scheer seems increasingly confident that he’ll win the most seats in next week’s election. Well, today he got put on the hot seat about autism twice.

    First, Ben Mulroney and his co-anchor grilled him about MFAN this morning on CTV’s morning show:

    https://twitter.com/YourMorning/status/1184831680315416576

    Then Jamie Peddle got to ask him for a commitment at a rally in front of TV cameras!

    https://toronto.citynews.ca/<wbr />video/2019/10/17/parents-want-<wbr />national-autism-strategy/

    If he did not know what autism was before the election campaign started, he sure does now!

     

    #23621
    Andrew Kavchak
    Participant

    Hi Folks,

    So apparently Trudeau won’t commit to a National Autism Strategy.

    https://globalnews.ca/news/6027763/trudeau-ford-autism-strategy/

    And Eugene Levy is speaking up (again) with Brenda Deskin.

    https://www.ctvnews.ca/canada/they-need-much-more-eugene-levy-urges-ford-gov-t-to-restore-autism-funding-1.4638527

    #23618
    bsharpe
    Keymaster

    Thank you to Andrew Kavchak, Jamie Peddle, and Sarah Ruth.  You are all parents of children with autism who organized and held a Press Conference and a Rally on Parliament Hill.

    As parents of children with autism, you juggled childcare, work schedules, sleep schedules, and filled up your gas tanks several times to drive to Ottawa for this rally.  Jamie drove from Brampton, Ontario and Sarah drove up from Buffalo, New York.  Andrew lives in Ottawa.  Andrew coordinated with Jamie and Sarah for the Press Conference speeches, rented the sound equipment and, along with Jamie, did the outreach to the reporters, newspapers and news agencies.

    These three parents presented spoke with clarity, presented the facts with passion and focussed on the singular message:  We need Medicare for Autism Now.   They packed a one-two-three punch not only for their own children, but for every child in Canada who has autism.

    On behalf of FEATBC, thank you.

    Beverley Sharpe

    #23617
    Andrew Kavchak
    Participant
    #23616
    Andrew Kavchak
    Participant

    Hi Folks,

    We are in the middle of a federal election campaign.  Two friends and I held a press conference and rally on Parliament Hill today calling for the inclusion of autism treatment in Medicare.  The press conference was super, the turnout for the rally was poor.
    Here is a link to the press conference video:
    I thank my co-participants who did a superb job. Hopefully there will be some media coverage over the next 36-48 hours.
    #23613
    bsharpe
    Keymaster
    OTTAWA AREA PARENTS, GRANDPARENTS, THERAPISTS, BROTHERS AND SISTERS, AUNTS AND UNCLES , FRIENDS, NEIGHBOURS AND EVERYONE WHO CARES ABOUT AUTISM TREATMENT BEING COVERED BY MEDICARE: WE NEED YOUR PARTICIPATION THIS FRIDAY,  OCTOBER 11th ,  at   12  NOON.
    The autism community is holding a rally on Parliament Hill to call for Medicare coverage to be extended to autism treatment and to include that as a core element of a National Autism Strategy.
    Way to go Jamie Peddle and Andrew Kavchak for organizing this and getting the word out in the media!!!
    Please distribute and help us spread the news to get as large a crowd as possible. Bring your signs and join the autism community on Parliament Hill on Friday, October 11 at 12 noon.
Viewing 10 replies - 11 through 20 (of 2,008 total)
  • You must be logged in to reply to this topic.