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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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  • #2495

    Hi Everyone:

    Just to let you know that Sabrina Freeman, the Director of FEAT of BC will be on CBC radio AM between 6-7 pm. tonight (that's Pacific Standard time)

    Still smiling.
    Barbara

    #2494

    David Chan
    Member

    just one word "Yippee"

    #2493

    Isaac
    Participant

    Hi everyone,

    Regarding the recent BC Supreme Court decision in favour of our kids, full text of Madame Justice Allan's "Reasons for Judgement" are now available on the web at the following address:

    http://www.courts.gov.bc.ca/jdb-txt/sc/00/11/s00-1142.htm

    Isaac
    (Mikis Dad)

    #2492

    Isaac
    Participant

    Here is a copy of the FEAT BC press release regarding the recent legal decision in BC Supreme Court. The release is also available in Acrobat PDF format at http://featbc.org/downloads/Judgment.pdf

    On behalf of everyone, a heartfelt thank you to Avery Raskin who worked well into the night to prepare and distribute this important release to all media.

    Isaac
    Miki's Dad

    __________________________________________________

    BC Government Violates Rights of Children with Autism
    BC Supreme Court Declares Denied Treatment is Medically Necessary

    The BC Government actively discriminates against children with autism:

    [132] “The petitioners are the victims of the government’s failure to accommodate them by failing to provide treatment to ameliorate their mental disability. That failure constitutes direct discrimination. Further, the petitioner’ disadvantaged position stems from the government’s failure to provide effective health treatment to them…”

    The BC Government violates the Canadian Constitutional rights of children with autism as guaranteed in the Charter of Rights:

    [156] “The Crown discriminates against the petitioners contrary to s. 15(1) by failing to accommodate their disadvantaged position by providing effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

    The BC Government is obligated to provide treatment for children with autism — treatment they have steadfastly refused to provide and still refuse to provide:

    [139] “I find that the petitioners have established that their s. 15 rights have been infringed…That unequal treatment, which is based on the enumerated ground of mental disability, is discriminatory. Here the only accommodation possible is funding for effective treatment.”

    These are the facts as declared late yesterday in BC Supreme Court, in the 66-page judgment of the Honourable Madam Justice Allan, in the case of four children with autism and their parents versus the BC Government:

    [102] “On the basis of expert evidence introduced by both parties, I find that early intensive behavioural treatment is a medically necessary service.”

    For the parents of these and countless other children with this tragic condition, the battle is for the only scientifically proven medical treatment in existence, Applied Behavioral Analysis (ABA) as developed by Dr. Ivar Lovaas at the University of California at Los Angeles. Decades of research data has proven the effectiveness of Lovaas-ABA in treating children with autism, data the BC Government chose to ignore in refusing any effective treatment for these afflicted children.

    [66] “It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown’s own expert witnesses.”

    [52] “The expert witnesses agree that the most effective behavioural therapies are those based on principles of ABA. There are no effective competing treatments.”
    [151] “The exclusion of effective treatment for autistic children undermines the primary objective of the medicare legislation, which is to provide universal health care.”

    The case against the Government began two years ago. It was started by a group of parents long frustrated by the burden of not only trying to help their suffering children, but doubly hampered by a bureaucracy that not only would not help them, but actively made getting needed treatment for their children even more difficult.

    [108] “Given that autism is defined in DSM-IV as a mental disorder, it is difficult to understand the reluctance of the government to provide ABA treatment that has been widely endorsed by medical practitioners and academics throughout the world.”

    One of the parents involved in the case, and also an expert witness for the petitioners, is Dr. Sabrina Freeman. The head of the volunteer parents’ group Families for Early Autism Treatment of BC said today, “We are thrilled that the Supreme Court of BC has placed children with autism on an equal footing with other children with medical disabilities. So many children whose parents could never afford proper medically necessary treatment will get the help they need thanks to Justice Allan.”

    [127] “The absence of treatment programmes for autistic children must consciously or unconsciously be based on the premise that one cannot effectively treat autistic children. The extensive evidence in this case shows that assumption to be a misconceived stereotype. The stigma attached to mental illness is historical and widespread. Only effective treatment can reduce the marginalization of autistic children and their exclusion from the mainstream of society.”

    In the 161-paragraph judgment, Justice Allan rejected many of the Crown’s arguments against providing effective treatment for children with autism, including the Government’s most energetic defence, that they cannot afford to do it:

    [147] – “In a broad sense, it is apparent that the costs incurred in paying for effective treatment of autism may well be offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization.”

    Justice Allan also rejected the Government stance autistic children receive equality of medical care since they can see a doctor for any problem other than their autism:

    [134] “…the Crown submits that if an autistic child gets cancer, he or she will receive treatment for cancer. That justification is misguided as well as unfortunate. It ignores the fact that autism is a medical disability just as cancer is and that both require treatment.”

    Still to be decided by Justice Allan are the extent of damages and remedies the Government must make to right the wrongs committed against children with autism. For more information or interviews, please contact Dr. Sabrina Freeman at FEAT of BC — 534-6956.
    Highlights of the Judgment of BC Supreme Court Justice Allan
    in the case of Auton et al v. Attorney General of British Columbia and the Medical Services Commission of British Columbia:

    (Please note: Quotes are verbatim from the Court’s judgment; abbreviations are expanded following each quotation in parentheses).

    P.24 [48] “The BCHOTA Report exhibits an obvious bias towards supporting the Crown’s position in this litigation. That detracts significantly from its usefulness.”
    (BCHOTA — BC Office of Health Technology Assessment at UBC)

    P.25 [52] “The expert witnesses agree that the most effective behavioural therapies are those based on principles of ABA. There are no effective competing treatments.”
    (ABA — Applied Behavioural Analysis)

    P.30 [66] “It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodology; they are positively discredited by one of the Crown’s own expert witnesses.”

    P.42 [102] “On the basis of expert evidence introduced by both parties, I find that early intensive behavioural treatment is a medically necessary service.”

    P.44 [108] “Given that autism is defined in DSM-IV as a mental disorder, it is difficult to understand the reluctance of the government to provide ABA treatment that has been widely endorsed by medical practitioners and academics throughout the world.”
    (DSM-IV — Diagnostic and Statistical Manual of Mental Disorders, 4th Edition)

    P.52 [126] “In failing to make appropriate accommodation for their health care needs, the Crown has discriminated against them. It is not the medicare legislation that is discriminatory or defective but the Crown’s overly narrow interpretation of it.”

    P.52 [127] “The absence of treatment programmes for autistic children must consciously or unconsciously be based on the premise that one cannot effectively treat autistic children. The extensive evidence in this case shows that assumption to be a misconceived stereotype. The stigma attached to mental illness is historical and widespread. Only effective treatment can reduce the marginalization of autistic children and their exclusion from the mainstream of society.”

    P.54 [132] “The petitioners are the victims of the government’s failure to accommodate them by failing to provide treatment to ameliorate their mental disability. That failure constitutes direct discrimination. Further, the petitioners’ disadvantaged position stems from the government’s failure to provide effective health treatment to them…”

    P.55 [134] “…the Crown submits that if an autistic child gets cancer, he or she will receive treatment for cancer. That justification is misguided as well as unfortunate. It ignores the fact that autism is a medical disability just as cancer is and that both require treatment.”

    P.57 [139] “I find that the petitioners have established that their s. 15 rights have been infringed…That unequal treatment, which is based on the enumerated ground of mental disability, is discriminatory. Here the only accommodation possible is funding for effective treatment.”
    (s. 15 — Section 15 of the Charter of Rights)

    P.61 [147] “In a broad sense, it is apparent that the costs incurred in paying for effective treatment of autism may well be offset by the savings achieved by assisting autistic children to develop their educational and societal potential rather than dooming them to a life of isolation and institutionalization.”

    P.62 [151] “The exclusion of effective treatment for autistic children undermines the primary objective of the medicare legislation, which is to provide universal health care.”

    P.63 [153] “The inability of the petitioners to access that treatment is primarily an issue of health care, not education or social services.”

    P.63 [154] “The Crown, and specifically the Ministry of Health, provides no effective treatment for the medical disability of autism…It is for the Crown to determine the measures it will take to comply with its constitutional obligations.”

    P.64 [156] “The Crown discriminates against the petitioners contrary to s. 15(1) by failing to accommodate their disadvantaged position by providing effective treatment for autism. It is beyond debate that the appropriate treatment is ABA or early intensive behavioural intervention.”

    P.64 [158] “The infant petitioners are entitled to a declaration that the Crown has violated their section 15(1) Charter rights.”

    #2491

    Sabrina Freeman
    Participant

    Court Case Update

    This afternoon Justice Allen handed down her decision in our case against the Government of British Columbia. The decision is in favour of our children and their families! More details will be available soon.

    Regards,

    Sabrina
    (Miki's mom)

    #2490

    Sabrina, thank you for your reasoned, objective and impartial post. I wish I had it in me to be as open-minded as you.

    For two years, I have had to attempt to battle the poisonous beliefs which school staff have picked up in workshops run by some of the groups you mention in your post; workshops paid for with my tax dollars while the same government that collects them denies my daughter medically-necessary, scientifically-proven, physician-prescribed treatment.

    I was unaware that any members of the profit-oriented anti-Lovaas groups you have mentioned had any form of privilege here whatsoever. While I can applaud the democracy of allowing them to further their disproven goals, I would be much more comfortable if I knew who they were in ANY post, not just in messages advertising for staff to continue their track record of ruining the lives of children who deserve better. My assumption was always that the people with posting privilege here were parents of chlidren with autism and members of FEAT BC, with all the implications thereof. I now find myself having to read each post while simultaneously trying to distinguish between those with good intentions, and those whose goals may be malignant towards my daughter's life and future. If I have to second-guess the motivation of everything I read here, it lessens by powers of magnitude the benefits for me of hearing from other parents running Lovaas programs. To say the least, it frustrates me.

    Avery
    Ariel's Dad

    #2489

    Sabrina Freeman
    Participant

    Some thoughts about the Feat of BC Discussion Board:

    As many know, a web-based chat board is a valuable forum for the free exchange of ideas and opinions — the essence of democratic free speech. A chat board is a mechanism by which everyone can have their opinions heard, discussed and debated.

    However, in the context of our chat board, there is a fundamental ground-rule everyone must abide by: members who post a message must identify the organization they belong to if that organization is a BC Government contractee. There is an important reason for this — we do not want members to be potentially mislead.

    There are government contractees who have posting privileges on the Feat BC chat board (e.g. Gateway, Laurel Group and CBI) and we believe they have a right to participate in discussions. However, it is extremely important that when government contractees advertise a position with an autism treatment team they are supervising, that they identify themselves to all chat board members and most importantly to prospective therapists.

    We, at FEAT of BC, believe prospective autism treatment therapists have a right to know whether a job posted to this chat board is with a group using the Lovaas protocol or other, non science-based intervention methods e.g. sensory integration, auditory integration training, music therapy, theraplay, vitamin therapy, dolphin therapy and others. To the best of my knowledge, B.C. government contracted agencies do not use the UCLA protocol (Lovaas) at this time for special needs services rendered under government contracts.

    A therapist trained in the UCLA protocol is certainly free to join the efforts advertised here by government service providers; however, we request that full identification be given with posts to this board so therapists can make an informed decision and not be potentially deceived into applying for a job that does not reflect their genuine career interest.

    We would like to advise government contractees who advertise jobs on the Feat of BC chat board that without full disclosure as to their affiliation, we regrettably must revoke posting privileges.

    Thank you in advance for your cooperation.

    Sabrina Freeman, Ph.D.
    Executive Director, FEAT of BC

    #2488

    Looking for Senior Therapist with experience to replace the current ST in the Fall or earlier. West Vancouver. 6 year-old, bouncy, beautiful boy with moderate to severe Autism, very verbal. Pay negotiable, depending on exp. Contact Dave Bridges at 604-913-3343 or email davidbridges@home.com .

    #2487

    Isaac
    Participant

    RE: Child Services Equality Act

    Hi everyone,

    There has been some discussion lately on the chat board about legislation proposed by a group working to end social services wait-lists for B.C.’s children.

    The “End Wait-lists for B.C.’s Children” group is attempting to compel the government to introduce The Child Services Equality Act (CSEA) to the legislature through a citizen’s “Initiative Petition” mechanism available through Elections BC. Even if the petition drive were successful, given its current majority in the legislature, government of course cannot be compelled by its citizenry to pass the CSEA into law, no matter how many British Columbians sign the petition. Taken in this context, the proposed legislation is in effect a citizen lobbying effort rather than a law-making process. In other words, citizen Initiatives are not binding in BC.

    In other jurisdictions, successful Initiative Petition drives CAN force legislative proposals to be put to the test of a vote at general election time; with a fifty-plus-one percent majority of eligible voters, Initiatives in other jurisdictions do become law, despite opposition from the government of the day. We do not have this type of direct democracy in BC.

    More importantly for our group (and this has been mentioned in preceding discussions on this topic) the proposed legislation has no provisions to address the pressing need for publicly funded, universally accessible autism treatment that is bona fide, science-based autism intervention.

    Strictly speaking, the CSEA is not relevant to the topic of our discussion group. However, the CSEA is emblematic of a growing discontent with what many view as deficient government policies towards disabled children. This we have in common with the “End Waitlists” folks; our group exists because of discontent with a shockingly inadequate (and often malevolent) status quo for children with autism.

    Will the CSEA do anything to establish publicly funded, science-based autism treatment for our kids, even in the unlikely event it becomes law? No … unequivocally; but since there has been some debate here regarding the CSEA, it may be useful to post the proposed legislation in its entirety for interested members of the group to arrive at informed conclusions as to whether the proposal is worthy of their support — the full text is below.

    Isaac
    Miki’s Dad

    _______________________________________________________
    (reprinted from http://www.waitlist.bc.ca/)

    THE CHILD SERVICES EQUALITY ACT

    Section 1
    DEFINITIONS
    1. Waiting list – a list of children and families waiting for provincial government funded social or health care services and programs
    2. Child – a person under the age of 19 years
    3. Applicant – a parent, guardian or child making a formal request for a government funded social or health care service or program.
    4. Early Intervention – any immediate action taken to prevent harm to a child or to improve the mental, emotional or physical function of a child
    5. Early Intervention Fund – a fund created to provide for the early intervention service list
    6. Early Intervention Service List – a list of services and programs created through the office of Child, Youth and Family Advocate.
    7. Child Welfare Professional – any person who is employed in a service industry funded by the government community or special organization that
    provide for the academic, physical, social, or psychological care of children (social workers, teachers, teachers aide, counsellors, community support
    worker, child care worker)
    8. Medical Professional – general practitioner, medical specialist, nurse, therapist (physiotherapist, occupational, speech and language), audiologist,
    psychologist, sociologist

    Section 2
    Statement of Intent.
    The intent of the Child Services Equality Act is the elimination of waiting lists for provincial government funded social and health care services and
    programs for children, and the creation of an early intervention fund.

    Section 3
    Processing Period.
    In place of the waiting list there will be the implementation of a processing period for all social and health care services and programs for children as set
    out in Section 4.

    Section 4
    Processing Period.
    When an applicant makes a formal request recommended or referred by a child welfare professional and or medical professional see Section 1, (7) and
    (8) for a provincial government funded program or service, the Ministry responsible has thirty calendar days for screening the application and delivering
    the service or program applied for. If rejected, the applicant may appeal in writing within thirty days to the Ministry responsible for the program or
    service denied. The Ministry must complete the appeals process as established by regulation within thirty calendar days of the appeal date.

    Section 5
    Early Intervention Fund.
    That an early intervention fund is created as a public service and be separate from the budgets used to provide current and future social and health care
    services and programs for children. The Early Intervention Fund will fund the early intervention service list and will be administered through the offices
    of the Child, Youth and Family Advocate in conjunction with the Ministries of/for Children and Families, Health, Education, Social Development and
    Economic Security. The Early Intervention Service List will be updated annually by the above mentioned offices and ministries. The government may
    enter into public/private partnership to provide additional funding to the early intervention fund.

    _______________________________________________________

    #2486

    What has happend in the court case between parents and the provincial government?

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