This topic contains 1,814 replies, has 143 voices, and was last updated by  Laurie Guerra 6 hours, 4 minutes ago.

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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 - 1,731 through 1,740 (of 1,814 total)
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  • #2563

    Hi Everyone

    Just a correction to the date in Sabrina's message re: the video conference. It is actually happening on March 15. The 9th is the registration deadline.

    Do we have the strength to attend!!

    Barbara

    #2562

    Sabrina Freeman
    Participant

    Hi again.

    I just received an invitation some members of the discussion board may find interesting.

    Apparently our government has hired a very big name to make it appear as though they are actually concerned with early intervention for special needs children. The editor of the groundbreaking New York Report on Best Practices for Children with Autism, Dr. Michael Guralnick, is now, ironically, working with the same government players (MCF) who tenaciously worked through government lawyers to trash the New York Report in B.C. Supreme Court. Your children’s ministry is now spending more of your tax dollars to put the editor of the N.Y. Autism Report on a province-wide, pre-election, video conference on early intervention. We can now rest assured with the knowledge that children are this government’s HIGHEST priority ;-)

    Anyway, the government has organized a “Free Video-Conference Education Forum: A Community-Based Prevention and Early Intervention System for Young Children with, or at Risk for Developing, Special Needs”, on March 9th from 12:30 – 4:30 PM at the following 20 towns in B.C. :

    – Courtney, Chilliwack, Cranbrook, Duncan, Fort Nelson, Fort St. John, Houston, Kamloops, Kelowna, Kitimat, Nelson, Port Alberni, Port Hardy, Prince George, Prince Rupert, Williams Lake, Powell River, Vancouver, Vernon, Victoria.

    I’m not sure how much of Dr. Guralnick’s address will relate to autism, but it should be interesting to hear what he will say about autism in front of the Ministry that has hired him to speak.

    If you would like an e-mail invitation to this video conference, you can contact
    Marie.Schultz@gems5.gov.bc.ca or give FEATBC a call (or mailto:admin@featbc.org) and we’ll fax you the registration form.

    Anyone planning on going, please contact FEAT BC if you would like to volunteer to give us your notes.

    Sabrina (Miki’s mom).

    #2561

    Sabrina Freeman
    Participant

    Hi all.

    I’ve just been faxed a very exciting piece of news by a hard working FEAT dad. The fax is part of a Liberal Party publication distributed today to Richmond households with a section entitled “Together, we can strengthen BC’s families”.

    The section reads as follows:

    “SUPPORT FOR PARENTS AND FAMILIES:

    One of the best ways to support children is to support those who raise them. Many new or expectant parents do not have role models for advice or companionship, and family resource programs play an important part in providing support.

    Families of children with autism face a particular need for early intervention programs, which are essential for learning and social development.

    – The government must ensure family resource programs continue to play an important role in early childhood intervention programs.

    – IN PARTICULAR, THE PROVINCE MUST MEET ITS LEGAL DUTIES UNDER THE CANADA HEALTH ACT.”

    At this time, only the Liberal Party of B.C. endorses the inclusion of medically necessary autism treatment in the B.C. health care system as required by the Canada Health Act. This is a major departure from long standing government policy that views autism is merely a social services matter under a Children’s Ministry jurisdiction.

    This is a very positive development. We all need to work hard to ensure that politicians keep their promises.

    Sabrina (Miki’s mom).

    #2560

    Sandy & Mike
    Member

    EXTREMELY well put Isaac. Cheers!

    Sandy (Jared's mom)

    #2559

    Isaac
    Participant

    RE: the Ministry of Health “BC Health Guide”

    Most of us received in the mail today — or soon will — Government’s new “BC Health Guide”, produced to help “you and your family stay healthy” (Health Guide overview available at http://www.bchealthaction.org/guide.html)

    As part of the BC Government’s $290 million “Health Action Plan”, the glossy, 396 page BC Health Guide has been published in very large quantity by the BC Ministry of Health (MOH) for distribution to every household in B.C. The hefty “handbook” is comprised of twenty-one chapters dealing with a variety of health care issues from “First Aid and Emergencies” to “Chest and Respiratory Problems”; Chapter 11 of the Guide is devoted to “Infant and Child Health”.

    As the parent of a child afflicted with autism, I quickly flipped to the “Infant and Child Health” chapter of the Guide to read what the BC Health Ministry says to parents who suspect there may be a developmental issue with their child’s health. I eagerly searched for some kind of infant developmental check-list — some MOH red flags. I looked for MOH guidance on recognized, well established childhood developmental milestones parents should look for to confirm their infant is healthy or, conversely, may be a child in developmental trouble in immediate need of assessment, diagnosis and early intervention. Sorry, not in this government publication.

    Coming as no surprise to our new generation of committed parents struggling to provide necessary health care for children with autism, there is absolutely nothing in the newly published BC Government “Health Guide” that addresses the need to screen for developmental problems in infants and young children.

    The MOH Health Guide has a lot of helpful physical health care advice targeted mostly for adults, but it has NOTHING (as in “zero”) to say about developmental health for infants and young children. So what DOES the BC Guide say about children’s health? It talks about:

    – bed-wetting
    – Chickenpox
    – Colic
    – Cradle Cap
    – Croup; Diaper Rash
    – Diarrhea and Vomiting
    – Fever
    – Fever Convulsions
    – Impetigo
    – Pinworms
    – Prickly Heat
    – Roseola

    That’s all folks! These are ALL the Infant/Child health issues BC Ministry of Health deems sufficiently worthy to talk about in the Health Guide hand book going out to hundreds of thousands of BC households. What is OMITTED about children’s health just screams about the serious, systemic problem with government priorities and misplaced ministry mandate for children’s health.

    An obvious conclusion about the Health Guide is that the government view of “health” is still very narrowly defined as PHYSICAL health only. Neurological health issues are totally shut out — and there are very serious statutory and constitutional problems that flow from that.

    In blatant disregard for the July 2000 BC Supreme Court ruling stating that autism, like cancer, is a HEALTH issue, the MOH Health Guide confirms that a profound, discriminatory attitude prevails in the way government even DEFINES what constitutes children’s health.

    In disregard for the BC Supreme Court view on the nature of autism, very young children with autism — yet to be diagnosed with the disorder — are completely ignored in the BC Health Guide. Our children do not even appear as a “blip” on the Health Ministry radar screen. Yet this is the ministry that consumes over 1/3 of your provincial tax dollars and continues to deny your child’s inclusion in the publicly funded health care system.

    Some might argue it makes sense that child development issues don’t even make honourable mention in the Health Ministry’s 396 page Health Guide. After all, autism treatment is the responsibility of the Ministry for Children and Families. This would be a compelling argument except for the thorny and inconvenient fact that the Health Ministry currently has a mandated and acknowledged responsibility for autism diagnosis and assessment! That’s what they said in court.

    So what’s up? Why does the user-friendly BC Health guide received in the mail today only spend 21 out of 396 pages on “Infant and Child Health”? How come a meager 5.3 percent of Health Guide pages devoted to children? Why do they not at least mention some of the SYMPTOMS of developmental children’s health issues parents should be looking for? The simple MOH fig leaf: “it’s not our problem, talk to the Children’s Ministry”.

    In 1997, the Government of British Columbia transferred responsibility for children with developmental issues out of the Ministry of Health into The Ministry for Children and Families — a Ministry created to deal with social problems (MCF was formerly a division of the Ministry of Social Services). Even though MOH pays for autism diagnosis and assessment, they are on-record regarding policy, that children’s developmental health (autism treatment in particular) is the responsibility of Ministry for Children and Families — a Ministry set up for child protection, not health care issues.

    An important part of the BC Supreme Court's reasons for judgment in the July 2000 autism ruling is opinion that child and youth mental health programs should never have been transferred to the Children’s Ministry. But that is where they remain. How many synonyms can we think of for government incompetence — and intransigence?

    BC Supreme Court states (Auton et al. v. BC Government, July 2000):

    “[58] Dr. Thomas Barnett, who is the child psychiatry representative on the B.C. Psychiatric Association, described the transfer of child and youth mental health programmes from MOH to MCF in 1997 as "an expensive experiment gone wrong." At the community level, he sees no benefits resulting from the transfer, in large part because the individuals who make policy within MCF and determine what services are available for autistic children lack training in psychiatry, psychology or behavioural intervention.”

    The Health Guide actually does talk about one health problem that is relevant to some parents of children with autism. There is a section about Irritable Bowel Syndrome (IBS, P. 93). The Guide says, “Symptoms of IBS often increase with stress …”. Of course what the BC Health Guide fails to mention is that for BC parents of children with autism struggling with Children’s Ministry bureaucrats for publicly funded autism treatment — and battling with school districts for mainstreamed educational supports — government is THE major source of pathological stress causing Irritable Bowel Syndrome in mothers of children with autism (this is a best kept government secret so far … anyone interested in doing a landmark study on this womyn’s issue)?

    Page 119 of the BC Health Guide DOES give some helpful advice on dealing with “Neck Pain”: the guide states, “Most people occasionally feel … a ‘kink’ in the neck caused by tension … or irritation …”

    Even with the helpful BC Health Guide, I still haven’t figured out how to deal with the awful “pain-in-the-neck” caused by MCF’s social workers.

    Regards,
    Isaac (Miki’s Dad)

    #2558

    Deleted User
    Member

    I wanted to address this thread, since it closely mirrors the situation in Ontario.
    There truely does seem to be such a division in camps between parents on how to best handle " government and beurocrats".
    How do we effectively communicate our message which for me is that children are knowingly being harmed by our elected representatives, have been now for years and in many places accross this wonderful country continue to have their Rights Violated and their worth diminished to less than a cow.
    I think what I have learned from Sabrina is that we need ALL types of people in this fight for these amazing children. We need people like myself who says things that make people very uncomfortable, but I will be the first to admit, I would not be the person you would want at a negotiation between their camp and ours…I would bring paint balls and water balloons among other things…but their are parents who have the skills and the reserve to deal with things on that manner.
    I do firmly believe that pursuing legal action is paramount to REALLY changing the continuing violation of our children. Although I am not part of the law suit in Ontario, I fully support their actions and really am not too concerned what the liberals think or the NDP for that matter. The reason I say this is because do you not think that they realize the suffering , the total disregard and the abandonment of innocent CHILDREN. They do and frankly in my efforts to send out my statement in Ontario some of the PC's were disgusted by their own party.
    If it were their children who were thrown out like yesterdays trash you can BET your *** they would be suing too and hoping you understood why.
    We as parents are not doing anything wrong. We are with conviction, pride and compassion for innocent CHILDREN trying to correct a horrible and inhumane action that we have bestowed upon our own Canadian CHILDREN.
    You don't have to soften your immage " to make them understand and see"….be who you are, take your role what ever that role may be…bomb thrower, negotiater, educator, legal leader and think about one thing… so far diplomacy and playing nice have moved us only in minute steps…
    Its true that their are many ways to skin a cat and choke that cat with cream…
    and I do understand the point that Andy was trying to make, but Andy realize this CHILDREN are still being harmed daily in one of the highest standard of living countries in the world and I doubt their is one " human" being that would not realize our frustration and agony and fault us for our intensity. After all we are talking about little beautiful CHILDREN, not vehicle recalls.

    #2557

    May I wade into this one? Thank you.

    Andy Danyliu wrote:

    All I said and still believe to be true is that the NDP believe that we (I too am a parent of an autistic child) are "litigious zealots". I never said that I agree with their mistaken opinions.

    I'm sure Sabrina accepts your apology, Andy, but you miss the point, which is: It does not matter what the NDP thinks. And personally I doubt they even consider us "litigious zealots" — more like "pains in the butt." But, you see, I don't care. They or their successors will do the right thing, or they will suffer the consequences, be that being voted out of office or taken to court. They did the wrong thing, pure and simple…and compounded that wrong thing with never once owning up to their mistakes and correcting them, even after having that mistake demonstrated to them over and over and over again.

    So fine, it looks like the Liberals are going to have their day in power. I am cautiously optimistic about that, because my own experiences with them in opposition have been positive. I had the great pleasure of accompanying Sabrina and Bev to Victoria to present that little petition the NDP ignored. We were treated with respect and understanding and a great deal of class by Ted Nebbeling, and I came away from that experience not only with new reasons to despise the party in power, but also with hopes that their successors might not be so laissez faire about our children's rights.

    I am simply suggesting that we talk with the politicians we expect to form the next government to show them what reasonable people we are.

    With all due respect, Andy, what in the wide world of sports do you think we HAVE been doing all this time? Do you believe we have waited until the dying days of the Gang of NDP Thugs to chat up the Liberal cavalry? I don't know about you, but I know several FEAT parents who have gone out of their way to enlighten and enlist the Liberals in opposition, which is what led to some of the actions that Sabrina already listed for you.

    So by all means, Andy, go right ahead. If you haven't done so already, please do phone your local Liberal MLA or candidate, and explain to them why children with autism deserve to have their rights respected. You might point them at the FEAT website where they can download all kinds of useful information, if they don't already have it. That's http://www.featbc.org — open 24 hours a day.

    I was trying to say as someone who spent eight years as an elected official is that cooperation is usually more effective than confrontation.

    Yes, cooperation is more effective than confrontation, and we are more than willing to cooperate with anyone who will legitimately work for what is needed for our children. And I will personally confront with my dying breath the miserable self-serving egocentric twits who would deny my child a life because it might put 30 cents into the pocket of someone without an NDP membership card.

    It's hard enough dealing with autism without picking fights with other parents in the same boat and it was never my intent to pick one this time.

    You said it, Andy.

    #2556

    FEAT BC Admin
    Keymaster

    MESSAGE FORWARDED FROM Andre Danyliu,
    _________________________________________________

    Subject: Re: Room Three: Discussions about Government Topics
    Date: Fri, 23 Feb 2001 14:10:37 -0800
    From: Andre Danyliu

    Re Sabrana Freeman's Analysis of my Earlier Message

    All I said and still believe to be true is that the NDP believe that we
    (I too am a parent of an autistic child) are "litigious zealots". I
    never said that I agree with their mistaken opinions. Furthermore I have
    never been a supporter apologist or sympathizer of the NDP.
    The parents who could afford to take the NDP to court performed a
    valuable service for their children and all the children living with
    autism.
    I am simply suggesting that we talk with the politicians we expect to
    form the next government to show them what reasonable people we are.
    It serves no useful purpose for us to analyze each others suggestions
    and draw conclusions which do not reflect what we are trying to say to
    add to a constructive and co operative dialogue. I salute FEAT! I salute
    Ms. Freeman for all her work all I was trying to say as someone who
    spent eight years as an elected official is that co operation is usually
    more effective than confrontation.
    It's hard enough dealing with autism without picking fights with other
    parents in the same boat and it was never my intent to pick one this
    time.

    Feat BC Discussion Board wrote:

    > ————————————————————
    > FeatBC Discussion Board: Room Three: Discussions about
    > Government Topics
    > ————————————————————
    >
    > By Sabrina Freeman (Freeman) on Friday, February 23, 2001 –
    > 12:27 pm:
    >
    > I'd like to respond to Andy Danylou's post suggesting FEAT
    > BC is comprised of “litigious zealots”, but first, I'd just
    > like to comment on how great it is to have this forum for
    > exchange of opinions, no matter how divergent those views
    > may be.
    > ______________________________________
    > Andre Danyliu wrote:
    > >
    > > Hello
    > >
    > > Barbara has a good point.
    > >
    > > We should ask to appear before the liberal caucus to
    > provide them with
    > > facts about Autism and establish lines of communication so
    > they don't
    > > see us as litigious zealots the way the NDP obviously do.
    > > We need to be politely firm; state our case and work with
    > them. Perhaps
    > > a task force to implement that which the courts and common
    > sense
    > > dictate?.
    > >
    > > I'm prepared to help in this effort if there are others
    > who agree.
    > ______________________________________
    >
    > Andy seems to insinuate that FEAT BC hasn't put enough
    > effort into opening lines of “communication” with the NDP
    > government, and that parents who brought this lawsuit are
    > trigger happy and did not exhaust all options before firing
    > the legal bullet.
    >
    > A closer look at the record indicates the label of
    > “litigious zealots” would be a grossly inaccurate
    > characterization of the families who brought on this legal
    > action. Sincere efforts at working with government have
    > spanned many years prior to the court case, both on the part
    > of FEAT BC and the hundreds of families who individually
    > have “communicated” with unresponsive civil servants and
    > government Ministers.
    >
    > Over several years before the writ was issued …
    > a. A detailed FEAT BC information packet was HAND delivered
    > to Minister Joy MacPhail outlining urgent policy reforms
    > required in autism treatment in 1996. Our analysis and
    > recommendations were ignored.
    >
    > b. Detailed FEAT information briefs were sent to EVERY
    > member of government including the Deputy Minister of MCF,
    > Ministers of Health, Children and Families, Premier Glen
    > Clark, and senior level civil servants. Our analysis and
    > recommendations were ignored.
    >
    > c. A FEAT BC delegation went to Victoria carrying an 8200
    > signature petition of concerned British Columbians asking
    > that children with autism be included in Medicare — it was
    > presented by a Liberal MLA to the government on the
    > legislature floor. Government’s response? A shallow speech
    > from a back-bench NDP MLA essentially stating Lovaas
    > Treatment is a gold plated American treatment and in these
    > times of fiscal problems, government can’t afford it.
    >
    > The same 8200 signature petition was hand delivered to the
    > Minister of Health, Penny Priddy in her office in the
    > parliament buildings. The petition and our legitimate
    > grievance were ignored. The “communication” went nowhere.
    >
    > The response of the Minister for Children and Families to
    > the petition? She dodged responsibility: “that’s something
    > that the Minister of Health would have to look at”. The
    > Minister of Health pointed fingers at the Minister of
    > Education. The CBC TV interview can be seen at the web site
    > below:
    >
    > http://www.featbc.org/files/media/video/CBCNEWS_06_01_98.ram
    >
    > d. We engaged the Minister of Children and Families of the
    > day, Lois Boon, in direct debate in parliament during budget
    > estimates, through one of our FEAT members’ MLAs — Rick
    > Thorpe. Not surprisingly, no government policy change
    > resulted — our children's treatment needs were still
    > ignored.
    >
    > e. Dozens of letters from our grassroots membership, all
    > produced in court affidavits, were written to high levels of
    > government pleading for help to fund their treatment
    > programs — none was forthcoming. Years of patronizing,
    > empty, boilerplate responses from intransigent, unconcerned
    > bureaucrats and politicians is all that our families
    > received.
    >
    > f. A direct appeal was made to Health Minister Joy MacPhail
    > on behalf of a FEAT representative by Federal M.P. John
    > Reynolds. The government's response was that Autism is not
    > a Health issue nor a Ministry of Health responsibility. She
    > passed us back to the Children’s Ministry and expressed no
    > government inclination to co-operate regarding our
    > legitimate grievance.
    >
    > When did we start to see ANY Government attention paid to
    > autism at all?
    >
    > Well, it started after FEAT BC helped expose the exodus of
    > parents to Alberta (The BCTV story “Leaving BC for Health
    > Care”
    > p://www.featbc.org/files/media/video/BCTVNEWS_11_26_97.ram).
    > Shortly after the story, government announced it would
    > convene an Autism Workshop “to guide and direct policy”.
    > The workshop result? A decision to create an Autism Action
    > Plan. Result of the Action Plan? An MCF booklet on its
    > “services” and how to access them … and a commitment to
    > conduct further planning and reviews.
    >
    > After years of government inaction, and parents being
    > rebuffed by intransigent bureaucrats, a writ was issued in
    > BC Supreme Court. Seventy-Two hours before the court case
    > was to start, the Ministry for Children and Families
    > announced an Autism Pilot Project. Coincidence? Was it a
    > genuine effort to help kids with autism or simply an attempt
    > to buy an argument in court i.e. “we need to show the judge
    > government really DOES have something other than
    > baby-sitting services or we’re toast”. Regardless, it
    > appears as though parents being “litigious” is what spurred
    > SOME kind of government action more substantial than the
    > Action Plan’s MCF booklet on services.
    >
    > The Pilot Project was not allowed in the court case because
    > the Deputy Minister of MCF refused to go on the stand for
    > cross examination. We can speculate as to what he was
    > afraid of.
    >
    > So what did government do next? After losing the July 2000
    > court ruling, they had a neat idea: “why don’t we take the
    > old Pilot Project, rename it and get it introduced in court
    > for the November hearings on remedy for the constitutional
    > violation? Let’s call it something impressive like the
    > Provincial Center for Autism and Related Disorders — the
    > P-CARD. Let’s tell the judge the new autism program will do
    > what she said we need to do, provide “Early Intensive
    > Behavioural Intervention”. Yah, that sounds good. Let’s put
    > that on the cover and run with it”.
    >
    > The P-CARD leaves 2 out 3 three kids under 6 out of the
    > program — even by end of 2002. It leaves 100% of kids over
    > 6 out — permanently. It has no components of genuine
    > autism treatment. It only accepts a government diagnosis —
    > your pediatrician’s diagnosis is not valid. But we did
    > “galvanize” the government to do something — other than the
    > booklet of course.
    >
    > Rather than being unfairly characterized as litigious
    > zealots, I would say we are a movement for social justice —
    > I am proud of that. We are defending the constitutional
    > rights of our children.
    >
    > Our very small numbers mean we have political power that
    > approaches zero, especially against a stubborn, intransigent
    > government and a vindictive bureaucracy.
    >
    > It may not surprise some of you that the Supreme Court of
    > Canada has already recognized the unfortunate situation
    > where a bureaucracy violates the rights of the disabled.
    > The court states, “In my opinion, groups that have
    > historically been the target of discrimination cannot be
    > expected to wait patiently for the protection of their human
    > dignity and equal rights while governments move toward
    > reform one step at a time. If the infringement of the rights
    > and freedoms of these groups is permitted to persist while
    > governments fail to pursue equality diligently, then the
    > guarantees of the Charter will be reduced to little more
    > than empty words.” Iacobucci, Vriend v. Alberta.
    >
    > In our case, we have taken a virtually powerless,
    > marginalized minority of disabled children before the courts
    > so as to bestow upon them the same rights the majority
    > enjoys to publicly funded health care.
    >
    > Going to court was a last resort, not the precipitous act of
    > hot-headed “litigious zealots”. Do we want to work with
    > government? Absolutely. But we have no partner who wants
    > to work in good faith. What we have now is a government
    > trying to pass off a hopelessly flawed pilot project as
    > fulfillment of what the court has directed.
    >
    > We hope a change in government will improve things for our
    > children; however, their constitutional rights — firmly
    > declared in court — must not fall victim to the vagaries of
    > BC’s polarized politics. Governments come and go and so too
    > their policies. Our children’s rights are too important.
    > Their right to health care must be entrenched to ensure that
    > the words of Justice Emmett Hall are not empty: "Our
    > proudest achievement in the well-being of Canadians has been
    > in asserting that illness is burden enough in itself.
    > Financial ruin must not compound it. That is why Medicare
    > has been called a sacred trust and we must not allow that
    > trust to be betrayed." Justice Emmett Hall.
    >
    > I quite agree with Andy Danylou that all FEAT members should
    > visit and speak to as many Liberal MLAs as possible. We
    > have already met with key Liberals on several occasions and
    > have found a receptive ear. My feeling is that the more
    > Liberals who truly understand the injustice and are touched
    > by parents of children with autism, or those children
    > themselves, the more quickly they will rectify the
    > discriminatory, second class status imposed by government on
    > children with autism. Until our children's treatment is
    > covered by the health care system, the fight for their
    > constitutional rights will continue.
    >
    > Just my two cents.
    >
    > Sabrina

    #2555

    Sabrina Freeman
    Participant

    I'd like to respond to Andy Danylou's post suggesting FEAT BC is comprised of “litigious zealots”, but first, I'd just like to comment on how great it is to have this forum for exchange of opinions, no matter how divergent those views may be.
    ______________________________________
    Andre Danyliu wrote:
    >
    > Hello
    >
    > Barbara has a good point.
    >
    > We should ask to appear before the liberal caucus to provide them with
    > facts about Autism and establish lines of communication so they don't
    > see us as litigious zealots the way the NDP obviously do.
    > We need to be politely firm; state our case and work with them. Perhaps
    > a task force to implement that which the courts and common sense
    > dictate?.
    >
    > I'm prepared to help in this effort if there are others who agree.
    ______________________________________

    Andy seems to insinuate that FEAT BC hasn't put enough effort into opening lines of “communication” with the NDP government, and that parents who brought this lawsuit are trigger happy and did not exhaust all options before firing the legal bullet.

    A closer look at the record indicates the label of “litigious zealots” would be a grossly inaccurate characterization of the families who brought on this legal action. Sincere efforts at working with government have spanned many years prior to the court case, both on the part of FEAT BC and the hundreds of families who individually have “communicated” with unresponsive civil servants and government Ministers.

    Over several years before the writ was issued …
    a. A detailed FEAT BC information packet was HAND delivered to Minister Joy MacPhail outlining urgent policy reforms required in autism treatment in 1996. Our analysis and recommendations were ignored.

    b. Detailed FEAT information briefs were sent to EVERY member of government including the Deputy Minister of MCF, Ministers of Health, Children and Families, Premier Glen Clark, and senior level civil servants. Our analysis and recommendations were ignored.

    c. A FEAT BC delegation went to Victoria carrying an 8200 signature petition of concerned British Columbians asking that children with autism be included in Medicare — it was presented by a Liberal MLA to the government on the legislature floor. Government’s response? A shallow speech from a back-bench NDP MLA essentially stating Lovaas Treatment is a gold plated American treatment and in these times of fiscal problems, government can’t afford it.

    The same 8200 signature petition was hand delivered to the Minister of Health, Penny Priddy in her office in the parliament buildings. The petition and our legitimate grievance were ignored. The “communication” went nowhere.

    The response of the Minister for Children and Families to the petition? She dodged responsibility: “that’s something that the Minister of Health would have to look at”. The Minister of Health pointed fingers at the Minister of Education. The CBC TV interview can be seen at the web site below:

    http://www.featbc.org/files/media/video/CBCNEWS_06_01_98.ram

    d. We engaged the Minister of Children and Families of the day, Lois Boon, in direct debate in parliament during budget estimates, through one of our FEAT members’ MLAs — Rick Thorpe. Not surprisingly, no government policy change resulted — our children's treatment needs were still ignored.

    e. Dozens of letters from our grassroots membership, all produced in court affidavits, were written to high levels of government pleading for help to fund their treatment programs — none was forthcoming. Years of patronizing, empty, boilerplate responses from intransigent, unconcerned bureaucrats and politicians is all that our families received.

    f. A direct appeal was made to Health Minister Joy MacPhail on behalf of a FEAT representative by Federal M.P. John Reynolds. The government's response was that Autism is not a Health issue nor a Ministry of Health responsibility. She passed us back to the Children’s Ministry and expressed no government inclination to co-operate regarding our legitimate grievance.

    When did we start to see ANY Government attention paid to autism at all?

    Well, it started after FEAT BC helped expose the exodus of parents to Alberta (The BCTV story “Leaving BC for Health Care” http://www.featbc.org/files/media/video/BCTVNEWS_11_26_97.ram). Shortly after the story, government announced it would convene an Autism Workshop “to guide and direct policy”. The workshop result? A decision to create an Autism Action Plan. Result of the Action Plan? An MCF booklet on its “services” and how to access them … and a commitment to conduct further planning and reviews.

    After years of government inaction, and parents being rebuffed by intransigent bureaucrats, a writ was issued in BC Supreme Court. Seventy-Two hours before the court case was to start, the Ministry for Children and Families announced an Autism Pilot Project. Coincidence? Was it a genuine effort to help kids with autism or simply an attempt to buy an argument in court i.e. “we need to show the judge government really DOES have something other than baby-sitting services or we’re toast”. Regardless, it appears as though parents being “litigious” is what spurred SOME kind of government action more substantial than the Action Plan’s MCF booklet on services.

    The Pilot Project was not allowed in the court case because the Deputy Minister of MCF refused to go on the stand for cross examination. We can speculate as to what he was afraid of.

    So what did government do next? After losing the July 2000 court ruling, they had a neat idea: “why don’t we take the old Pilot Project, rename it and get it introduced in court for the November hearings on remedy for the constitutional violation? Let’s call it something impressive like the Provincial Center for Autism and Related Disorders — the P-CARD. Let’s tell the judge the new autism program will do what she said we need to do, provide “Early Intensive Behavioural Intervention”. Yah, that sounds good. Let’s put that on the cover and run with it”.

    The P-CARD leaves 2 out 3 three kids under 6 out of the program — even by end of 2002. It leaves 100% of kids over 6 out — permanently. It has no components of genuine autism treatment. It only accepts a government diagnosis — your pediatrician’s diagnosis is not valid. But we did “galvanize” the government to do something — other than the booklet of course.

    Rather than being unfairly characterized as litigious zealots, I would say we are a movement for social justice — I am proud of that. We are defending the constitutional rights of our children.

    Our very small numbers mean we have political power that approaches zero, especially against a stubborn, intransigent government and a vindictive bureaucracy.

    It may not surprise some of you that the Supreme Court of Canada has already recognized the unfortunate situation where a bureaucracy violates the rights of the disabled. The court states, “In my opinion, groups that have historically been the target of discrimination cannot be expected to wait patiently for the protection of their human dignity and equal rights while governments move toward reform one step at a time. If the infringement of the rights and freedoms of these groups is permitted to persist while governments fail to pursue equality diligently, then the guarantees of the Charter will be reduced to little more than empty words.” Iacobucci, Vriend v. Alberta.

    In our case, we have taken a virtually powerless, marginalized minority of disabled children before the courts so as to bestow upon them the same rights the majority enjoys to publicly funded health care.

    Going to court was a last resort, not the precipitous act of hot-headed “litigious zealots”. Do we want to work with government? Absolutely. But we have no partner who wants to work in good faith. What we have now is a government trying to pass off a hopelessly flawed pilot project as fulfillment of what the court has directed.

    We hope a change in government will improve things for our children; however, their constitutional rights — firmly declared in court — must not fall victim to the vagaries of BC’s polarized politics. Governments come and go and so too their policies. Our children’s rights are too important. Their right to health care must be entrenched to ensure that the words of Justice Emmett Hall are not empty: "Our proudest achievement in the well-being of Canadians has been in asserting that illness is burden enough in itself. Financial ruin must not compound it. That is why Medicare has been called a sacred trust and we must not allow that trust to be betrayed." Justice Emmett Hall.

    I quite agree with Andy Danylou that all FEAT members should visit and speak to as many Liberal MLAs as possible. We have already met with key Liberals on several occasions and have found a receptive ear. My feeling is that the more Liberals who truly understand the injustice and are touched by parents of children with autism, or those children themselves, the more quickly they will rectify the discriminatory, second class status imposed by government on children with autism. Until our children's treatment is covered by the health care system, the fight for their constitutional rights will continue.

    Just my two cents.

    Sabrina

    #2554

    FEAT BC Admin
    Keymaster

    MESSAGE FORWARD FROM: Andre Danyliu, andre_danyliu@telus.net

    _________________________________________________

    Hello

    Barbara has a good point.

    We should ask to appear before the liberal caucus to provide them with
    facts about Autism and establish lines of communication so they don't
    see us as litigious zealots the way the NDP obviously do.
    We need to be politely firm; state our case and work with them. Perhaps
    a task force to implement that which the courts and common sense
    dictate?.

    I'm prepared to help in this effort if there are others who agree.

    FeatBC Discussion Board wrote:

    > ————————————————————
    > FeatBC Discussion Board: Room Three: Discussions about
    > Government Topics
    > ————————————————————
    >
    > By Barbara Rodrigues (Rodrigues) on Wednesday, February 14,
    > 2001 – 12:48 pm:
    >
    > Hi Everyone:
    >
    > I was wondering what thoughts everyone has on the upcoming
    > election. Does anyone think a change in Government will
    > help our kids and push through individualized funding for
    > proper 'Lovaas' ABA programs and not these great little
    > 'eclectic' programs that the Government's putting together.
    > I mean, yes we will get a different Government but the
    > people in the Ministries are not going to change, right?
    >
    > What I am asking is how do we go about getting a firm
    > answer/commitment from the new party in order to see some
    > postive changes for our kids. Now, I know our MLA has been
    > greatly supportive, etc. but are things really going to
    > change in terms of funding for our kids if the Government is
    > changed?
    > What should we do in terms of trying to make that a reality?
    >
    > Thoughts/suggestions?
    >
    > Barbara
    > Jeremy's Mom
    >

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