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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 - 441 through 450 (of 2,008 total)
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  • #2365
    Andrew Kavchak
    Participant

    Hi Folks,

    OK, so the latest U.S. Government survey says…1 in 50.

    http://www.ctvnews.ca/health/u-s-estimates-autism-now-being-diagnosed-in-1-in-50-kids-1.1203041

    #2366
    Bev Sharpe
    Member

    IMPORTANT ANNOUCEMENT

    Civil Rights Now! Board members Jean Lewis and David Marley will be on the Bill Good Show CKNW AM 980 AM on Friday, March 22 at 11:00am to discuss the launch of the Think Twice campaign.

    The Bill Good Show can be heard on-line if you go to here and click on LISTEN LIVE in the upper right-hand corner.

    On March 22 at 11:00am please call the Open Line at 604-280-9898 or on your mobile at *9898 and tell Bill Good you support the Civil Rights Now! proposal.

    #2367
    Bev Sharpe
    Member

    It is with regularity that the news is reporting stories about disabled, vulnerable or senior citizens being abused, mistreated, or being crushed under bureaucratic red-tape and government ineptitude. The most recent story is BC Representative for Children and Youth – Mary Ellen Turpel-LaFond's report titled, "Who protected him?" The facts are absolutely shocking and should make all of us, whether disabled or not, to think twice… Read the complete report at http://www.rcybc.ca

    We ask – Why is it acceptable for the police to taser an 11 year old boy with disabilities? Why is it acceptable for disabled people to live in government-funded group homes staffed by completely unskilled and under-qualified staff? Why is it acceptable for disabled people living in "government care" to be locked into "safe-rooms"? Why? Because NO laws exist to protect British Columbians with disabilities. And until they do, the living conditions, healthcare, and standard of care for our disabled family member, or vulnerable parent and, one day each of us, depends solely on the discretion and whim of unelected, powerful bureaucracies.

    We need laws…period. Civil Rights Now! has created a proposal to create laws which if enacted will dramatically improve the lives of British Columbians. Now – all of us need to demand that the government do so. Now is the time…the provincial election in on May 14th.

    We need everyone – disabled and "temporarily-abled" to join in our "Think Twice" campaign. Come out on March 23rd. Find out what you can do. Please forward this invitation to your networks and ask that they do the same. Also – invite your local MLA and/or candidates seeking to be elected on May 14th to attend.

    See http://www.civilrightsnow.ca to rsvp and for more detailed information on our proposal and campaign.

    Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

    Please join Civil Rights Now!
    and help us launch the:

    Think Twice Campaign

    · Saturday, March 23rd.
    · Coal Harbour Community Centre
    · 480 Broughton St., Vancouver
    · 2:30 pm to 4:30 pm

    Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

    Special Guest Speakers will include: Jeanette Poulson, parent advocate
    · Refreshments, door prizes, Q and A

    Due to space restrictions, please RSVP asap to civilrightsnow.ca

    Everyone is welcome!

    #2368
    Andrew Kavchak
    Participant

    Hi Folks,

    As you know, World Autism Awareness Day is coming up. And Canada has a law, Senator Munson's Bill, that recently made the declaration about it being officially Autism Awareness Day in Canada.

    So what does the autism community in Ottawa do? Instead of rallying on the hill with big signs that say "Medicare for Autism Now!" (as we did on several occasions, including the anniversary of the SCC Auton decision several years ago), it seems that something like a stamp collection is being organized, and Mike Lake, one of the historic opponents to Senator Munson's bill on autism awareness, is being given the keynote speaker role along with being characterized as a "champion".

    I got this notice (below) by email today. It is a strange twist that the CEO of the local children's hospital would be there. The story is complicated, but my understanding is that in Ontario, the autism treatment program is not covered by Medicare and the department of health, but by another Ministry (they change their name from time to time, but something like "Community services", etc.). That department contracts out the service of ABA provision to regional providers. In Eastern Ontario, the regional provider happens to be the local children's hospital. However, the provision of the treatment is not covered by Medicare, and there are endless waiting lists (I believe that the historic average in Ontario has been over 1,200 for the past decade) and although they claim there is no age cut-off, my family and others know that there certainly is, as they use various techniques to kick kids out of the program.

    Ironically, the Canada Health Act and public health insurance coverage for healthcare is supposed to apply to services provided by doctors and hospitals. Even though the local children's hospital is clearly demonstrating that they can provide the medical service (notwithstanding the ages it takes for a diagnosis, the subsequent years it can take to get off the waiting list for treatment, and then the premature ejection from the program, the problems with service standards, etc.), the authorities do not appear to have any interest in extending Medicare coverage to autism treatment.

    I was previously happy that Senator Munson's bill was approved because I saw it as a stepping stone and opportunity to put on more pressure and lobby for meaningful action and change. However, the locals appear to be content with letting the champions of the status quo do the talking.

    _______________________

    Autism on the Hill
    World Autism Awareness Day
    Wednesday, March 27th, 2013 – Noon to 12:45pm
    Parliament Hill

    With the signing into law of Senator Jim Munson’s Bill S-206 An Act Respecting World Autism Awareness Day, you are invited to join us on Parliament Hill for an event highlighting this year’s World Autism Awareness Day.

    This inaugural public event promotes both awareness of autism and the coming together of community, individuals and government required to make life better for people and families affected by autism. We share the same goal!

    Autism ribbons will be handed out at noon. The event will take place from 12:15 to 12:45.

    We are honoured to have as our keynote speakers Mr. Mike Lake, MP, and Mr. Alex Munter, CEO of the Children’s Hospital of Eastern Ontario. Senator Jim Munson and Mr. Glenn Thibeault, MP will be standing alongside Mr. Mike Lake, as they are all champions of people with autism and their families.

    Please join us to show that by working together we can achieve a better life for people and families affected by autism.

    Our banner will feature “The Faces of Autism”, a collection of photos of Canadians on the spectrum. Let’s fill the banner! Please send in your photos to AutismOnTheHill@gmail.com. Follow us on Twitter: @AutismOntheHill #AutismOnTheHill

    Autism is a neurological disorder with a rapidly increasing prevalence, currently affecting 1 in 88 children. (CDC)

    #2369
    Mike & Jean
    Participant

    Many thanks to all who were involved in making government partially re-introduce the direct payment option. Well done, all!

    This is a fantastic example of what happens when parents, who are also taxpayers and voters take clear, purposeful, political action.

    Keep it up – there's a provincial election on May 14th. Come out to the "Think Twice" campaign launch on Saturday, March 23rd at the Coal Harbour Community Centre in Vancouver. Find out what you can do. http://www.civilrightsnow.ca

    #2370
    Julie Ng
    Participant

    Thanks Roxanne, Debra, Louise, Dione and Dr White and anyone else for fighting for this option for us.

    I couldn't access Roxanne's link but here is the announcement from the MCFD site.

    http://www2.news.gov.bc.ca/news_releases_2009-2013/2013CFD0003-000483.htm

    Note: At the bottom of the bullitin it states that you have to be on the invoice payment method for 2 years before being able to use the direct funding method. That will be a pain in the <>, for the new families just starting out.

    "All families must be on the invoice payment system for two years before they are eligible for the direct payment option."

    Regards

    Joachim

    #2371

    YES!! That is terrific news and the right decision for sure. Many, many thanks to all of you for your commitment to fight for families every step of the way.

    Why the age limits is beyond me but it is a foot in that very thick and heavy door.

    And yes, Barbara, post 19 is a whole other topic. Thank goodness for the experience and skills we have learned along the way. Sending strength and positive energy to your family.

    #2372
    Barbara Rodrigues
    Participant

    Way to go Ladies! Thank you for all your hard work and effort. That is wonderful news for parents. Now can I borrow you all to deal with CLBC? ;-)

    Barbara Rodrigues

    #2373
    #2374

    Announcement today from Minister of MCFD Stephanie Cadieux, we now have the option of Direct Funding back. Unfortunately it's not everything we've been asking for, the Direct Funding will be for children between 12 and 18. You will now have the option to choose if you would like to stay with the current payment option or the direct funding as we had in the past. Also if you have more than one child on the spectrum you can opt for the younger sibling before they reach 12 to be transferred over to the direct option. You will receive the $6,000 in the child's birthday month. You will also have more options as to what you spend your funding on. I will post the formal announcement.

    I want to thank a few parents in particular, Debra Antifav who came to our very first meeting with her stack of data showing all the late payments from government. Louise Witt and Dione Costanso, we were each others wing men at almost every meeting pertaining to this issue. Last but not least Dr Sara White who presented all the data on behalf of consultants and of course had parents and children's back at many meeting with government. She was instrumental in convincing government that this was the right thing to do.

    We will continue to work on this and hope that all parents can have this option back if they so desire. Thanks to all of you!!!

    I also want to thank Minister Cadieux for taking a step in the right direction!

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