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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.

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  • #23749
    bsharpe
    Keymaster

    Thank you to the founder of FEATBC, Dr. Sabrina Freeman for providing this concise history.
    <p align=”center”><b>How the BC Government Got Individualized Funding for</b></p>
    <p align=”center”><b>Autism Treatment in British Columbia</b></p>
     

    I thought it might be important to those of you in the new generation of parents to understand the history of individualized funding in BC, since you are fighting this battle again.

    <b>The History of How BC Got Individualized Funding for Autism Treatment</b>

    • In 1996, the B.C. government (NDP at the time) refused to accept the fact that there was an effective treatment for autism.  The Ministry of Social Services was only offering generic services (limited respite care for disabled children based upon a poverty/social services model).

    • Local autism organizations at the time were not advocating for science-based treatment.

    • Families for Early Autism Treatment of BC (FEATBC) was established in 1996 and started educating parents about science-based treatment.  In addition, FEATBC attempted to educate and lobby various bureaucrats and politicians.  Unfortunately, FEATBC was ignored despite considerable high profile publicity (see the FEAT-BC media page).

    • Due to the complete disregard of autism treatment requirements, parents active in FEATBC organized their 1st lawsuit and invited everyone to join.  There were many brave parents (30 in fact) who stepped up to the plate and joined (and found the $5000 each to fund the lawsuit).

    • As the lawsuit worked its way through the courts, parents kept advocating. Governments came and went but the unelected MCFD bureaucracy and technocracy still fought parents every step of the way.  It is important to understand that the last thing government apparatchiks want is to give parents the choices to decide what is best for their children.  The only way parents have power to choose in the current system is through individualized funding.  There was and still is an extremely paternalistic view of parents once they have a disabled child.  The system wants to keep them in the poverty model even though poverty has nothing to do with disability (until the government makes you poor because you’ve spent everything you have to provide treatment).

    • When the Auton case was won at the BC Supreme Court level, the government was mandated to provide medically necessary autism treatment; however, the judge could not order the government to put autism treatment into Medicare, since micromanaging government is not the role of the judiciary. So the government decided to create three Hubs (sound familiar)?  They didn’t call them hubs but rather so-called autism treatment centers.  For $2,500,000 they were going to “treat” 25 children for 20 hours a week.  Their solution was to have 75 children inefficiently “treated” while thousands languished on the waiting list.   As you have probably figured out by now, it is blindingly obvious that MCFD <i>couldn’t run a hotdog stand at a baseball game. </i>

    • While the Ministry for Children and Families was working on their autism centers to treat 75 children, families were busy at work lobbying for individualized funding.

    • In 2001, families successfully lobbied to implement the individualized funding model you have today.   FEATBC developed a policy brief for Gordon Campbell’s newly elected government (here is a copy of the Choices in Autism Treatment brief which is the program template used by government). Within a week of the brief’s delivery, a first-of-its-kind individual funding program for autism treatment was announced.  That is the program you’ve had for the last 20 years.

    • The capacity issue that government always uses for long waiting lists and a lack of autism treatment was actually solved by individualized funding.  The number of BCBAs flourished since this is now a well-funded profession where bright, young therapists can pursue advanced degrees and make a good living.  It’s basic Economics 101!  The shortage of autism professionals in the hinterland can be easily solved; give more money to parents in parts of BC where there are few professionals. Professionals will either travel or relocate into areas where they can now make a living.

    <b>Government’s Likely Agenda</b>

    • The number one reason that NDP governments dislike individualized funding is that the service providers are not unionized.  They care primarily about workers’ rights, not the treatment of children with autism.  If you do not believe me, I encourage you to read the Supreme Court of BC 2006 Hewko decision, which addresses the shocking incompetence of unionized paraprofessionals in the public school system.

    • MCFD’s main argument today is that the <i>Hubs</i> will eliminate diagnostic waiting lists by eliminating the requirement for a diagnosis. That is interesting since it is the government that has <i>created</i> diagnostic waiting lists.  Any developmental pediatrician, psychologist or psychiatrist is capable of diagnosing autism.  Multidisciplinary teams are not essential.  If the government would not funnel children into centers that diagnose autism, there would be no bottleneck.  Moreover, the fact that they want to have children in hubs <b><i>without a diagnosis</i></b> indicates that they have no intention (not to mention ability) to effectively treat children for their core health need — autism!

    <b>The Fear Factor</b>

    • From 1996 to 2021, politicians and government bureaucrats respected and perhaps were somewhat intimidated by the parent lobby; however, after 25 years, there is a new generation of bureaucrats and politicians who have no collective memory of the public debate and the political price government paid for victimizing children with autism.

    • In the provincial election of 2001, the NDP lost 77 out of 79 seats to the Liberals.  Some of this loss can be attributed to their disgraceful policies towards children with autism and the very loud media campaign waged by FEATBC.  Suffice it to say that there was a very public slagging of the NDP due to their abhorrent behavior with respect to children with autism.  Many staunch NDP supporters could not stomach these policies and voted accordingly (see the George Straight’s autism editorial opinion). Today’s NDP politicians and bureaucrats do not have the collective memory and are regrettably careening in the same direction.  Parent advocates would be wise to remind them of the political price reflected in that historic 2001 election.

    <b>The Future</b>

    I believe that in every generation there are competent parents who can organize the thousands of parents who are struggling to provide the best possible autism treatment for their children.  You need to find parents who are collectively oriented and are prepared to use their political and/or professional connections to find talented, strategic advocacy and legal representation.  These parents need to empower other parents who may never have engaged in any kind of advocacy until circumstances force them to protect their children from the MCFD’s politicians and bureaucrats.  Now is your time.

    Best regards,

    <i>Sabrina </i>

    Note:  There is much detail at the FEATBC website (https://www.featbc.org ) for those of you who want to find more information.  We have kept a tremendous amount of material online, available to serve the needs of advocates and lawyers who choose to fight for the rights of children afflicted with autism, for moments such as this.

    #23719
    bsharpe
    Keymaster

    Would you like to see what is happening in another part of the world regarding science-based treatment for autism?

    This FREE webinar awaits:

    https://mailchi.mp/4b55cd5e24b5/webinar-registration-aba-in-australia-research-results-1091186?e=9b352bb251

    The Autism Behavioural Intervention Association invites you to join ABIA and Dr. Erin Leif on Tuesday, Oct. 13th at 7pm for a free webinar and QA to discuss the results of the ABA in Australia research project.

    Erin Leif, PhD, BCBA-D, joined the Board of Directors of the Association for Science in Autism Treatment in 2018, and is currently serving as the Media Watch Lead. In this role, she coordinates efforts to identify and respond to accurate and inaccurate portrayals of autism and its treatment in the media, through the association’s Media Watch initiative.  Sign up today for this FREE webinar!

    #23692
    bsharpe
    Keymaster

    Greetings everyone,

    Here is the March edition of the Association for Science in Autism Treatment’s newsletter:

    https://outlook.live.com/mail/0/inbox/id/AQQkADAwATEyMgBlOC1kYzI1LTZhYzEtMDACLTAwCgAQAJjIjB%2F%2B5ElPhSAZNlWhJvA%3D

    There is an interview with Andrew Kavchak, father and advocate who wrote the book:  “The Fight for Autism Treatment in Canada, Reflections of a Parent Activist”  A must-read for everyone touched by autism.  Andrew is a regular, well-respected contributor to this FEATBC Chat Board.  Thank you Andrew!

    Also, an article “A Brief Treatment Summary of Social Stories”, and “Rapid Prompting Method and Autism Spectrum Disorder Systematic Review” along with the article “Behaviour Development Solutions , A partner level sponsor with ASAT” .  In this March issue we would like to showcase exciting new professional development opportunities for BCBA’s on the Behaviour Development site.

    Also, ASAT participated in Autism New Jersey – the update is in this March issue!

    The ASAT newsletter is a free publication!  Sign up to receive this newsletter at: https://asatonline.org/newsletter/

    Wishing our readership safety, care and vigilance with Covid-19 virus protocols.  Stay safe.

    #23683
    bsharpe
    Keymaster

    Hello everyone!

    It is with great pleasure that I encourage everyone in the Autism community to read Andrew Kavchak’s book: “The Fight for Autism Treatment in Canada -Reflections of a Parent Activist”

    The book is available as a eBook and paperback at amazon (free to subscribers of Kindle Unlimited).

    https://www.amazon.ca/Fight-Autism-Treatment-Canada-Reflections-ebook/dp/B084FHY8BF/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1581090014&sr=8-1

    This book chronicles the struggle for Medicare for Autism Now, and is recommended reading for everyone in the Autism community.

    Beverley Sharpe

    Director,  FEATBC

    #23674
    Andrew Kavchak
    Participant

    Hi Folks,

    I just wrote a book titled “The Fight For Autism Treatment in Canada – Reflections Of A Parent Activist”.

    The book is about what we have been dealing with over the past two decades.

    I have dedicated the book to Beverley Sharpe and Dr. Sabrina Freeman and all the families that were involved in the Auton case.

    The book is available as a eBook and paperback at amazon (free to subscribers of Kindle Unlimited).

    https://www.amazon.ca/Fight-Autism-Treatment-Canada-Reflections-ebook/dp/B084FHY8BF/ref=tmm_kin_swatch_0?_encoding=UTF8&qid=1581090014&sr=8-1

    Please feel free to bring this to the attention of anyone you think might be interested in knowing how we got to where we are.

    Thank you!

    Andrew Kavchak

    #23649
    Andrew Kavchak
    Participant

    Hi Folks,

    Another milestone today.

    Trudeau just published the “mandate letters” for his Ministers.
    The one for the Minister of Health makes a reference to developing a National Autism Strategy.
    The Minister of Employment, Workforce Development and Disability Inclusion is expected to contribute to the effort.
    Well, this is historic and unprecedented.  I think our community needs to recognize that.  While I suspect that there are a few people and organizations that will attempt to take credit for this, the fact is that the push for this goes way back to 2004 and the Auton hearings at the SCC and many people contributed to the effort over the years.
    Let’s keep our eyes wide open. A National Autism Strategy (NAS) is only as good as its pillar components.  An NAS may end up being anything…and could range from a dedicated effort to working with the provinces to include autism treatment in Medicare with a funding formula, etc.  to tax credits, to more awareness and anti-stigma campaigns, to recommendations for “more study”.  Who knows what the Liberal Government has in mind.
    However, we know there will be “consultations” and the usual suspects will make their cases.  In Ontario there was quite a fiasco this year with the provincial government’s announcements in February, which resulted in quite an upheaval of backlash from the community and then the government’s announcement of a new round of consultations and appointment of an Advisory Panel. When the Ontario Autism Coalition surveyed hundreds of members of the community to compose a report for the Advisory Panel, the report said that over half of those surveyed said they wanted autism treatment covered my Medicare. Of course, I and many other parents also wrote to the government consultations website and the Advisory Panel members that we wanted MFAN.  Yet, when the Advisory Panel issued its report in late October, not a word was said about MFAN.
    Will the federal government’s consultations be the same? Or different?
    Time will tell.  But speaking of time, given that this is a minority Parliament, I hope the Minister “fast tracks” the process.  The development of a “strategy” is one thing (and the Conservatives proposed during the recent election to take five years to develop one), but the decision to implement, and the subsequent initiation of the implementation are separate stages.  It is conceivable that a strategy will be developed, but no decision to implement will be made before the next election.  One thing for sure….MFAN supporters have to speak up at every consultation opportunity.
    #23650
    Andrew Kavchak
    Participant
    Trudeau just published the “mandate letters” for his Ministers.  There is a reference to the development of a National Autism Strategy (NAS)
    The one for the Minister of Health makes a reference to developing a NAS.
    The Minister of Employment, Workforce Development and Disability Inclusion is expected to contribute to the effort.
    #23651
    Andrew Kavchak
    Participant
    Trudeau just published the “mandate letters” for his Ministers. There is a reference to a National Autism Strategy (NAS).
    The one for the Minister of Health makes a reference to developing a NAS.
    The Minister of Employment, Workforce Development and Disability Inclusion is expected to contribute to the effort.
    #23642
    Andrew Kavchak
    Participant

    Hi Folks,

    Well, after this recent election it appears that Parliament will resume sitting in early December.  Historically, the key public policy documents in Ottawa which provided an indication of where the government is going were the “Speech from the Throne” (SFT) at the beginning of every new Parliamentary session, and the annual budget. Thus, we should expect a SFT shortly (presumably right after they pick a new speaker in the House of Commons).  However, after the 2015 election Justin Trudeau threw a new indicator in the stew – “mandate letters” for his Cabinet Ministers.  These mandate letters outlined the specific items that Trudeau wanted each Minister to work on in their portfolio.  If he does it again, the mandate letters should be made public at some time after his Cabinet is named.

    So…what are the chances that the word “autism” will appear in any of these documents?

    #23639
    Andrew Kavchak
    Participant

    Hi Folks,

    Interesting story in Quebec….a Liberal MNA from the Westmount riding in Montreal proposed to the CAQ government that they undertake a study of services for people with autism. She has two kids with autism, so she knows a thing or two about available services (or the lack thereof).  She seemed to be particularly concerned about the transition to adulthood. So how does the CAQ government respond?  Rejection of the proposal.  Well, well… so in what way is Quebec “distinct” from the other provinces and the rest of the country?  The Quebec government is not interested in even considering the possibility of just hearing from the community about what could help….and does any other province demonstrate the opposite? Not as far as I can tell.  The recent consultations and panel report in Ontario was given a mandate that was restricted to just the Ontario Autism Program (OAP).

    Well, at least the Liberal MNA tried.  But I can’t help wonder…why is it that such proposals are so frequently made by parties when they are in opposition and not when they are in government?  I don’t want to appear negative or cynical, but have we not seen this before?  It seems that this kind of behaviour in the political arena is so common as to be predictable.

    https://montreal.ctvnews.ca/caq-dismisses-liberal-proposal-to-study-services-for-people-with-autism-1.4674452

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