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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 - 451 through 460 (of 2,008 total)
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  • #2375

    Hi All,

    First, I would like to thank very much all FEAT B.C. parents who keep posting their successful stories about what ABA therapy has been doing for their children regardless of if they have just recently started or if they have been doing it for many years. These positive stories are a true encouragement to all parents to continue their hard work with ABA and never give up their fight, the same way that they cannot give up loving their children.
    When I say this, I think of not giving up on ABA with our children no matter how severely they can be disabled with their autism, and I thank all parents, relatives, professionals and Canadian citizens who fight to get this medically necessary treatment fully funded by Medicare.

    Our children must receive their ABA treatment continuously and intensively as prescribed by a physician and qualified Behavior Consultant. However, all funding our children presently receive under the Ministry of Children and Families is a direct result of parents’ law suits and can be removed with the stroke of a pen.

    Our autism population needs to receive their services and treatment from the age of diagnosis through to adult years, but they do not have their medically necessary treatment covered by Medicare. In addition to this injustice, medical treatment for any other condition is not automatically removed due to an age restriction but in a case of autism population we have exactly the opposite. Please take a look at the following example with the latest news of what happens with the teenage and adult population with autism in Ontario:

    Ground-breaking adult autism survey reveals mountain of unmet needs:
    http://www.thestar.com/news/ontario/2013/02/05/groundbreaking_adult_autism_survey_reveals_mountain_of_unmet_needs.html

    This injustice should not happen anywhere, especially not in Canada!
    If you are Canadians who care about your loved ones and your neighbours, who love your country and believe in true human values, who would like to stop this terrible injustice to our disabled population and change their lives, please join Civil Rights Now!

    Parents, families and friends, please come to the Civil Rights Now! event on March 23rd !!!
    http://www.civilrightsnow.ca

    #2376
    Dione Costanzo
    Participant

    Special Presentation – “Taxes and Autism”

    FRIDAY FEBRUARY 22, 7:00-9:00PM

    Special Guest Speaker – Dave Taylor

    Dave Taylor is the parent of a child with autism and has been administering a home based ABA program for 8 years.

    Dave has done extensive research into the financial side of managing an ABA team and has gathered information on all kinds of issues from his own experiences and from feedback from other parents.

    Some of the topics that Dave will cover during this meeting are:
    • The *new* Family Care Giver Amount tax credit
    • Disability Tax Credit
    • Medical Expenses
    • Federal tax credits and tips for tax time

    This is a must-see presentation for anyone that is running or thinking of setting up a home based ABA program. The content of this presentation applies to programs for individuals from pre-diagnosis to age 18.

    Here are what some parents are saying about Dave’s presentation:

    “Dave Taylor really made it clear to us the importance of keeping our records organized. He has great tips and resources for parents”

    "I have been to this talk 3 times and each time I learn something new and critical. Much appreciated!!!"

    “The “tax man” can be so confusing and Dave helped us to clarify funding and tax information that autism parents need to know.”

    “Whether you have been running an ABA program for a month or 10 years – this presentation is invaluable to ALL parents.”

    “Great information – thank you Dave! We have so much more confidence that we are getting the most out of our therapy dollars now.”

    Topic: Taxes and Autism
    Date: Friday February 22
    Time: 7:-9pm
    Location: Best Western Peace Arch Inn (downstairs meeting room)
    2293 King George Hwy, Surrey, BC V4A 5A4
    RSVP: dione@abasupportnetwork.com
    PLEASE RSVP so that we know how many people are attending this popular event. Thank you!!

    #2377
    Drew Beckett
    Member

    To Les Elton (Lelton)

    This is not a forum for your politics. Also, correlation does not imply causality.
    -as the authors of the paper (Rey et al. BMJ) cited note:
    "Whether the use of cannabis triggers the onset of schizophrenia or depression in otherwise vulnerable people or whether it actually causes these conditions in non-predisposed people is not yet resolved."
    If they had a statistically significant link relating cannabis to ASD, you may have a reason to post here. But unfounded political statements are not helpful.

    #2378
    Les Elton
    Member

    Hi All as a followup to our previous note,

    There are some pretty solid scientific links between Cannabis use and Schizophrenia. Studies done right here in BC show a 4 times increase in Phycosis/Schizophrenic like symptoms that require pharmaceuticals to control, for the rest of the persons life. These are folks who have no traditional family/genetic link to Schizophrenia.

    The link found by doctors and researcher is much higher in children/teens who smoked marijuana early in life before there brain had fully developed. It's important information for those who believe that Marijuana is a benign substance, it unfortunately, is NOT.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124674/

    http://www.nationaldrugstrategy.gov.au/internet/drugstrategy/Publishing.nsf/content/C22A31B6C742DFE5CA25767E00122541/$File/m684.pdf

    http://www.guardian.co.uk/society/2007/jul/27/drugsandalcohol.drugs

    http://www.cbc.ca/documentaries/natureofthings/2010/downsideofhigh/

    The science is pretty solid, but not well known in our current "political" quagmire of folks pushing for marijuana legalization.

    #2379
    Andrew Kavchak
    Participant

    Hi Folks,

    And in the "What will they think of next?" category, we now have the use of medicinal marijuana on children with autism…

    http://www.foxnews.com/health/2013/01/25/parents-treat-severely-autistic-child-with-medical-marijuana/?test=latestnews

    #2380

    Hi there,

    I was referred here by the "Autism Funding in BC" website. Not sure if I'm posting in the right section, but I'm looking for a recommendation of an advocate/practitioner who his used to filling out the T2201. Our referring doctor was worried she might not fill it in correctly and therefore delay the process, or worse, cause our application to be rejected.

    Thanks so much,

    Melissa

    #2381
    Julie Ng
    Participant

    Thanks Andrew for pointing out the "lack of access to Speech Therapy services in BC" article.

    I know that the piece is about not being able to access publicly funded Speech Therapy in BC but as I read through it, I found that the costs stated were little confusing. It's a fact that each child's needs are different but in this case they are asking for a ~$72,000 per year program (Speech 4K/mth + IBI 2K/mth).

    Would most parents consider that a higher end "Cadillac" program or a "run of the mill" program nowadays? For a newly diagnosed child $22K is not enough but is there a optimum amount new parents should be asking for base on X, Y and Z..etc requirements for budgeting?

    The article is written in a way that makes it seems like the child is not getting any therapy although there was a short line about some form of IBI for $2,000 a month. Maybe the details got edited but is it fair to ask without stating all the facts, or costs should not matter, it should be something between the patient and physician regardless of costs?

    What do you think? If you met your local MLA or MP how much would you ask for per child and how would you justify the amount?

    Disclosure: My child's 14 now, he's doing well in school (thanks to "the ABA program") and I'm out of touch with the costs new parents have to deal with.

    Regards

    Joachim (Alex's Dad)

    #2382
    Andrew Kavchak
    Participant

    Hi Folks,

    http://www.cbc.ca/news/canada/british-columbia/story/2013/01/11/bc-autismdelays.html

    I thought I was reading an article about this end of the country, but then I realized it was about things at your end, and then I realized it's all the same. Wait, wait, excuses, excuses, etc.

    Two and a half years…would that be the national average perhaps?

    Andrew Kavchak (Ottawa)

    #2383
    Dione Costanzo
    Participant

    Another anniversary – 2 years ago FEAT of BC issued a press release about the AFU's inefficiencies in processing payments and the effect that is was having on autism service providers, families and ultimately children with autism were the ones put in jeopardy.

    http://www.cbc.ca/news/canada/british-columbia/story/2010/11/23/bc-autism-payments-delayed.html

    2 years later nothing has really changed. Government inefficiency is not news but our kids and their right to medical treatment is!! Please join me in contacting Christy Clark and Stephanie Cadieux (and your MLA and the press) in keeping the pressure on them:

    Email Address
    premier@gov.bc.ca

    Mailing Address
    The Honourable Christy Clark
    Premier of British Columbia
    Box 9041
    Station PROV GOVT
    Victoria, BC
    Canada V8W 9E1

    Phone Number
    (250) 387-1715

    Stephanie Cadieux:

    E-mail: stephanie.cadieux.mla@leg.bc.ca
    Web site: http://www.stephaniecadieuxmla.bc.ca

    Office:
    Room 236
    Parliament Buildings
    Victoria, BC
    V8V 1X4

    Constituency:
    120 – 5455 152nd Street
    Surrey, BC
    V3S 5A5

    Phone:
    604 574-5662

    Both are also on Facebook.

    #2384
    Lisa Singer
    Member

    I am hoping to get some advice from parents who have been through this before. My son is 5 years old and we are currently running an ABA program in our home 5 days a week. Lyric is responding wonderfully to the program and we want to keep the program running as long as possible.

    However, in July next year, he will turn 6 and then our funding will significanlty drop. If parents out there are finding ways to keep running home ABA programs even after age 6, could you offer some advice on how you are funding them. Is it possible to get more funding than the $6000.00?

    Thanks in advance for any and all advice. My email address is spuffyobsessed@gmail.com

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