[FEAT BC Admin]

FROM: Board Admin.
TO: Discussion group members
RE: message posting advisory
**************************************

FEAT BC’s Internet provider made software changes at the FEAT server over the Weekend that resulted in problematic issues related to administration of the board. Consequently, it was necessary to temporarily suspend posting to the Discussion Board on Sunday evening through early Monday morning (06/16/03) when a workaround was put in place. The board is now open again for posting.

To those who attempted to post during this short service blackout period, we extend apologies and encourage you to visit the board again to post the message.

Thank you.
Board Admin.

[FEAT BC Admin]

ADMIN. REPOST (with apologies): Full text of the relevant Q/A in the Ontario Legislature is below.
___________________________________________________

The following questions were raised by Shelley Martel, MPP and NDP Critic for Health and Children's Issues, in the Ontario Legislature on May 28, 2003
AUTISM TREATMENT

Ms Shelley Martel (Nickel Belt): I have a question to the Minister of Community, Family and Children's Services. Yesterday, Judge Lane dismissed your government's attempt to appeal the ruling by Justice Gans which forces your government to pay for IBI treatment for six-year-old Andrew Lowrey. In his decision, Judge Lane said, "This case is about one six-year-old boy who will suffer irreparable harm if he does not receive this treatment." Hundreds of other autistic children like Andrew also face irreparable harm because your government cuts them off from IBI treatment when they turn age six, because they languish on a waiting list and never receive treatment at all, or because their parents face financial ruin as they try to pay for this costly treatment themselves.

Minister, when is your government going to do the right thing and fund IBI treatment for all autistic children who need it?

Hon Brenda Elliott (Minister of Community, Family and Children's Services): On this side, we are aware of the decision that was made yesterday. What that means is our commitment to helping those children and families who struggle with autism remains very strong. I say to the person in the third party across the way, who criticizes us on a regular basis for our autism programs, that under her government not one cent was ever given to autism. Under our government in 1999, we started a program that has now grown to $100 million, which responds to the research that says very intensive therapy to those children at the very critical early years is the right way to go. That is the expert advice we are following. We are supplementing that with a number of new programs, all aimed in one direction, and that is to help the children and the families who are struggling with autism.

Ms Martel: May I remind you, Minister, with respect to your commitment, that it was your government that was in court trying to appeal a ruling forcing you to pay for treatment for Andrew. That's the level of your commitment to these kids. May I also remind you that right now we have 29 Ontario families taking your government to court because you have arbitrarily cut off treatment for their children at age six; we have another 80 families who have filed complaints before the Ontario Human Rights Commission, arguing your government discriminates against their children on the basis of age; we have the Ombudsman, who is doing a special investigation because of the waiting lists for IBI treatments; and yesterday, Justice Lane dismissed your government's blatant attempt to try and undermine a court ruling that said Andrew's treatment should be paid for? I ask you again, Minister, when is your government going to do the right thing and pay for IBI treatment for every autistic child who needs it?

Hon Mrs Elliott: Our government understands that autism is a disorder of which the incidence appears to be growing. Researchers all around the world are trying to find a solution to help the children and families who are struggling with this disorder. That is why it is our government that has instituted not only the intensive behavioural intervention-type program that responds to the research that says it is the most effective provided at an early age, but we are moving forward with new programs, transition programs from those early year programs into school age and, for the first time in the history of Ontario, introducing out-of-school programs for children with autism who are of school age, in addition to the special education programs already offered in the province of Ontario. Why? Because we know that helping children is the right thing to do. That is why this government has $2.2 billion invested in programs for children.

[FEAT BC Admin]

In reply to Jeff’s question:
>Would it be possible for a list to be posted confirming those that have been registered …

We're unable to post names of confirmed registrants on the Discussion Board because discussion posts are published on the World Wide Web i.e., this forum is not a confidential medium.

Regarding the therapists’ workshop, anyone whose registration form arrived at FEAT BC after the sign-up reached capacity will be contacted by phone to notify.

[FEAT BC Admin]

This announcement is about the upcoming FEAT BC Autism Behavioural Therapist Workshop at S.F.U. (June 7, ’03).

Thank you to all those who have shown enthusiastic support for this important training opportunity. For those who have not mailed their cheques yet, please be advised that available seats have all been reserved and registration for the workshop is now closed.

[FEAT BC Admin]

Hello everyone,

Apologies to members of the group who may have attempted to post a message to the FEATBC Discussion Board this morning and early afternoon (01/27/03); the web site experienced a very unusual outage caused by an aggressive attack on our Internet provider. Many of you may already be aware of this worldwide issue i.e., the Microsoft SQL Worm.

Service was up again later this afternoon; here are ‘Network Status’ notes from the technicians:

“Network Communications Center:
– Monday, January 27, 2003 at 16:21:11 (EST)

Our Network Engineering Team continues their work to end
the connectivity issues that some of our customers may be
experiencing. This issue is being caused by the Microsoft SQL Worm currently attacking the Internet. We appreciate your patience and understanding during this period."

Network Communications Center:
– Monday, January 27, 2003 at 17:35:50 (EST)

We experienced a network outage caused by the SQL worm
attempting to replicate itself. The end result was a flood of
internet traffic that has created latency for some areas but
it did not result in any of our servers being infected. We
found a fix to fend off the flood of traffic which brought all
of our network back to normal flow immediately as of 4:00
pm EST. We will be implementing a permanent fix to avoid
such incidences in the near future.”

[FEAT BC Admin]

Board Admin. Advisory
***************************************************
Dear FEAT BC Discussion Board members:

The vast majority of members in the group are respectful of forum rules, particularly the important requirement than no member shall personally attack a fellow member of the group; only ideas can be challenged — personal attacks are impermissible. Although it is understandable that passions will occasionally flare surrounding controversial topics, nevertheless, we regularly ask that members respect the important rules posted on the "Welcome" page of the site:

1) Be courteous to each other …
2) Personal attacks are not permissible in the FEAT BC Discussion Group. We respect all opinions even if we disagree with them.

Unfortunately, a member has violated the fundamental precepts that underlie the quality and value of the Chat Board. The egregious post (dated 11/21/02) has been removed from the Board and the account has been closed resultant of the harmful breach. We very much regret having to take this measure but it is necessary, in the best interests of the forum.

Thank you.
Board Admin.

[FEAT BC Admin]

Dr. Tim Stainton, UBC Associate Professor of Social Work and Family Studies, has requested the opportunity to reply to comments made by DR. Sabrina Freeman in this forum. Sabrina’s post centered on a talk given by Dr. Stainton and the Community Living-IEII issues raised at the government sponsored Autism 2002 Conference. Her original post is available in the Government Topics room, dated October 22, 2002.

Dr. Stainton’s message to the group consists of two parts: an open letter to the discussion group followed by an excerpt-comment reply by Dr. Stainton to Sabrina’s post. The second part has been reformatted with brackets in a Freeman’s post [Stainton’s reply] fashion. Aside from this minor formatting change to improve clarity, Dr. Stainton’s post appears unedited and in it’s entirety.

For those with thoughts and comments about the letter, discussion is encouraged. However, we know the issue of social services discretion over autism treatment funding is a highly charged and emotional issue for many, so please make every effort to critique ideas only and avoid personal attacks on the speaker.

Thank you.
Board Admin.

— BEGIN DR. STAINTON POST —

Dear Dr. Freeman,

I am very dismayed and concerned by your recent posting on the FEAT discussion list regarding my presentation at the Autism 2000 Conference and the Community Living Transition Process and want to clarify a few points to ensure your members are getting accurate information and to try and open up a more positive discussion on these issues which we all agree are critical to our son's and daughter's futures. Before I address some of the specific issues you raise I want to make a couple of general clarifications.

I have not been appointed by the Government to administer the proposed governance authority nor have I ever worked for, or under contract, to any BC government. I am one of 10 volunteer family representatives asked to sit on the Community Living Transition Steering Committee. I gave up much of my summer to try and work towards a better future for our children. No member of the CLTSC received anything beyond expenses. Incidentally, my presentation and the question period on Sun at the conference were also purely voluntary.

My second point is regarding your assertion 'that government bureaucrats have successfully turned a large group of parents of people with developmental disabilities against those of us who are advocating for autism treatment rights'. I am really puzzled as to how you could arrive at this conclusion from my talk. I certainly have never heard any parent express anything but admiration for the truly remarkable achievements of the families involved in the Auton Decision. My own view is the same. Certainly there may be fears that money will be transferred from other budgets to meet the requirements of the judgment, but the response has been more to ensure that money is added to the pot, not simply moved from other budgets, which is, I think, a fair concern and is not about dividing and conquering, but simply very legitimate worry about their own children's future which I know your members will readily understand. I would also point out that despite the omni-present issue of budget throughout the work of the TSC, one of the recommendations specifically refers to funding for autism treatment arising out of the Auton decision or otherwise and recommends that it be protected from any budget REDUCTIONS. Furthermore, we were careful to include a clear statement that any financial demands arising out of further litigations must be the responsibility of the government not the new authority.

I suppose on a personal note what saddens me is that you appear to be the one trying to divide families. I understand how hard you and your members have struggled to meet the needs of your children, just as the many families who are involved in the TSC. Some indeed have played a greater role in your victories that you may be aware-individualized funding would not be on the radar were it not for some of the families involved in this process. On an even more fundamental level, 'mental disabilities' would not be in the Charter of Rights were it not for the lobbying efforts of some of the people involved in this process-there was great resistance to its inclusion at the time and it was only through an eleventh hour effort that it was included. My point is, these families are not your enemies, they want the same things for their sons and daughters as you want for yours-further, the whole point of the process is to make sure families have the power and control they need to decide what is best for their children and that they receive the support necessary to make it happen regardless of whether it is ABA, housing or respite etc..

I would welcome the opportunity to meet with you and any of your members to discuss any of the issues you raise or the work of the TSC. Indeed I was approached by one of your families about whether this was possible and I am only to happy to oblige. I can appreciate that the speed and nature of the process has led to some understandable mis-understandings. The report is due out very shortly both electronically at http://www.cltsc.bc.ca/ and within a couple of weeks in hard copy.

Remember, the TSC is simply making recommendations to the Government; we have finished our work and have no further responsibility for implementation, the Minister will decide how and when he wants it to proceed. We need to talk and listen to one another now more than ever-let us not divide ourselves. As you point out your families have much to offer other families-and vice versa, so let's work together for the sake of all our children and everyone with a disability.

I have inserted some specific clarifications and corrections into the text of your original email below. I would appreciate it if you would post this letter and my response in its entirety onto your Chat room so families can make up there own mind. I would also very much welcome the opportunity to meet with you to try and 'clear the air' and see how we can work together towards a better future for all people with disabilities.

Respectfully Yours,
Tim Stainton

************************
By Sabrina Freeman (Freeman) on Tuesday, October 22, 2002 – 07:41 pm:

The Autism 2002 conference and Community Living Transition

Hi everyone,

[section deleted]

Individualized Funding through the Community Living Governance Model

As some of you may be aware, in April 2003 the IEII program is going to be administered by a quasi-government body. I heard a lecture given by Tim Stainton, Ph.D., U.B.C. Professor of Social Work, who is heavily involved in this transfer of funding authority. Dr. Stainton appears to be (at first glance) …

[Given that ever since I was exposed to the concept by the Woodland Parents Group and the CLS I have studied, researched, written about, taught about and advocated for IF throughout Canada, Europe and the US I think it is safe to say your first glance is correct a proponent of individualized funding].

Right now there is a Transition Steering Committee in charge of the transfer of authority. Although this sounds like simply a bureaucratic reorganization (yet another MCFD 'restructuring' shuffle), I am somewhat concerned that a group comprised of parents of children with a VARIETY of special needs will have power over autism IEII funding. For those of you receiving this funding, it is important to remain vigilant.

[In very general terms this is correct but it is important to know that government made the decision to move virtually all services provided by MCFD into community governance authorities. This affects both community living and the protection services side of the ministry. In community living, the transition steering committee, of which I was one of 25 appointments made by the minister, has no authority or control over the process – it is a body struck to make recommendations to the minister on how the transition should occur. It has completed its work and the report is expected to be available on the internet next week and in hard copy within a matter of a few weeks].

Why the concern? Partially because Dr. Stainton's comments and some unfortunate facts and opinions were telegraphed by this key speaker.

Points to keep in mind follow:

– Conspicuously, IEII parents running ABA programs are not part of the Community Living transition steering committee. The question is, will they be part of the group that decides who does or doesn't receive funding, and how much? This appears to be a small group of parents who have a disproportionately large amount of power and discretion. They are unelected and most certainly do not represent the majority of children with autism who require necessary treatment.

[THE TSC WAS COMPRISED OF PARENTS OR FAMILY MEMBERS [10], SELF ADVOCATES [3], SERVICE PROVIDERS [7], ADVOCATES [2] AND GOVERNMENT STAFF [5]. THEY WERE APPOINTED BY THE MINISTER IN APRIL AND WORKED AS VOLUNTEERS OVER THE PAST SIX MONTHS. No particular group or organization was represented beyond BCACL. There were parents of children with autism involved in the process in various ways, however, as noted, the composition was the Minister's choice not the parents. I should further add that we did not make recc. on specific programmes or funding levels but you will find that special expertise on issues such as autism will be required by the planning system].

– Dr. Stainton seems to challenge the fact that IEII funding is earmarked for "medically necessary" autism treatment. When a mother asked about whether such necessary treatment was going to be means-tested, Dr. Stainton said that although many folks believe that this is medically necessary treatment, the BC Court of Appeal had not yet decided on this and that we were all going to have to wait for that ruling. Key point is that Dr. Stainton was not prepared to concede that ABA is medically necessary treatment. This is quite troubling and should sound the alarm for all families running home-based programs.

[I do not recall saying anything remotely akin to this, my comment on the appeal was about whether there would be any further money available and whether the age restriction will be lifted. I was simply saying I did not know and like the family members present was awaiting the decision. I also stated I believe that I hoped the proposed system would, regardless of the appeal, make the system more flexible and responsive with regards to levels of funding and age limits, but I have no knowledge of what the future budget might hold. As to my views on whether ABA is medically necessary, as you point out I made it quite clear I do not have the expertise or knowledge to make that judgment BUT I fully support a system which allows parents to make that decisions based on the best advice available to them. Quite frankly-I think my talk should encourage families running home based programmes that structurally at least, limits on funding and age may well disappear].

– Throughout Dr. Stainton's talk and via discussions at the conference, I arrived at the opinion that government bureaucrats have successfully turned a large group of parents of people with developmental disabilities against those of us who are advocating for autism treatment rights. They have used the tried and tested technique of "divide and conquer." Specifically, the government pitch appears to be, "since the court case makes us spend all this money on autistic children, there just isn't enough for your special needs children." Of course, this false zero sum argument was made and lost by BC Attorney General lawyers in both BC Supreme Court and BC Court of Appeal.

[In addition to my comments above, I can assure you that, having been at the table, the TSC was anything but "turned". When you review the report I am certain that you will be reassured as to commitment of the members, parents and others].

The Community Living group — and I've spoken to a few of the movers and the shakers who have cozied up government for many years, and whose grown children are being funded — denies that there is a qualitative difference between the treatment needs of our children, and the housing/care/respite needs of the families they represent. We know there is a big difference. Our children's primary need is costly treatment for a health issue, not respite! This is potentially a VERY SCARY situation.

[This is a very sweeping statement and I am not sure who the people are that you refer to that you have spoken with, but it is not consistent with what I observed at the table over the past six months. Nor is it consistent with the recommendations. I think it is also an insult to families who are at the table some of whom I can assure you are not having their children's needs met and are struggling with this daily as I'm sure are many of the families you represent].

Another view of the Community Living group seems to be, apparently, that we are trying to change our children purely to conform to society … that we should just let our children be who they are and work to see that society changes for — and adapts to – them! In my opinion, the fact that this attitude is pervasive in Community Living quarters reflects an utter ignorance regarding what autism treatment is all about and what this devastating condition holds for children and families absent bona fide treatment.

[Nothing in my talk referred to anything like this nor does it reflect my opinion].

Dr. Stainton offered an anecdote about one autistic person who he apparently 'deinstitutionalized,' and for whom he found employment. In telling this story, he displayed a profound ignorance of ABA and likely offended 3/4 of the audience. In his defense, Dr. Stainton DID admit he knows nothing about autism or ABA. However, the anecdote shows his hand regarding an attitude towards ABA and children afflicted with autism that is an anachronism.

[The story I told was not about a man with autism nor did I 'deinstitutionalize him', I worked with his family to help him move out of Woodlands and begin to establish a life in the community. The part of the story regarding the 'behavioural treatment programme' did not refer to ABA per se, but to what I consider a badly planned, designed and executed behavioural programme which resulted in his being labeled as having challenging behaviour-this was juxtaposed to how we achieved a far more positive outcome for this man by listening to his family and his own communications. I would expect you of all people to agree that ABA interventions need to be well planned, executed by well trained staff and be appropriate to the needs of the person and involve the family. As noted I don't claim expertise in this area, but do not regard myself as 'profoundly ignorant' of ABA. As to offending 3/4 of the audience, my understanding is that the evaluations do not bear this out and the spontaneous applause at the end of the story would seem to suggest otherwise. My concern however is not with the type of treatment or support, but that families have the right and support they need to get what they feel is best-including ABA].

For those of you receiving IEII funding, you need to be vigilant and communicate the moment your monies start to be eroded. We all know that the amount of IEII only pays for 1/3 of your program. We cannot afford any erosion whatsoever. In addition, the minute any means testing is introduced (Dr. Stainton claimed there would be no means testing for autism I stated that this was not in the TSC reccs.), you MUST communicate. Understand that if we do not hang together on this, we will hang separately. Remember that many parents with special needs children who are not autistic, are not happy about gains made by our community. They feel as though somehow their children are going to lose out … what Justice Allan referred to in Auton 2 as government pitting one special needs group against another. The saddest part of this for me, personally, is that I would be more than willing to share ideas with these parents on how to see that government lives up to its responsibilities for other special needs children. I think we all have to help each other, irrespective of our children's disabilities.

[I agree, so lets do that].

I strongly suggest that every parent receiving IEII funding e-mail me directly (skfreeman@featbc.org) and I will compile a list. The moment I hear that this money is being eroded, I will contact you all and we can then meet to review all legal options. Unfortunately, I know of no other way to keep the Community Governance structure accountable. Quite frankly, I'm surprised that the government is so naïve as to think they can delegate the treatment needs of our children to a group of parents who don't believe in the legitimacy of medically necessary autism treatment needs and then expect them to administer the funding as the courts have ordered. This is just untrue as to what is going on and your families need the facts. The last time the government set up a similar parent group was with the "At Home" funding program, which we all know discriminates against children with autism because the four criteria for funding are: a child's dependence for 1) eating, 2) toileting, 3) dressing and 4) sleeping. As we all know, once a child is in an IBI program, the above criteria no longer apply for many children with autism – the entire program has a clear physical (vs. neurological) disability bias. All the other issues parents with autistic children face, such as safety concerns for example, don't count for folks running the "At Home" program.

[I think it is good to be vigilant but again, I think you should wait to see the report before you conclude what the position of parents or anyone else might be. Again an example is one of the recommendations specifically refers to funding for autism treatment arising out of the Auton decision or otherwise and recommends that it be protected from any budget reductions. Again I would just add a general caution in your assignment of beliefs to anyone without actually confirming the information. I saw and heard nothing during the work of the TSC that would support your contention that the people involved had little or no understanding of autism or its treatment or fundamentally disagreed with the positions taken by parents of children with ASD].

Government hides behind this group of parents by saying, "it's not up to us, it's up to the parent group." I hope the new Community Living structure for autism treatment funding does not turn into the latest rendition of the Monty Python Cheese Shop skit. Gains made thus far for younger children may be reversed unless we are stay smart and well-organized.

[I think we all share this hope. Many hundreds of parents, family members, service providers, self advocates, and others have worked for more than a year to protect the community interest in the outcome of this process].

If you would like to know more about the way that IEII money is to be distributed, please e-mail the conference speaker at: timst@interchange.ubc.ca for policy clarification. But remember, he has been appointed by government to administer a quasi-government body.

[I would appreciate hearing from parents and doing what ever I can to help them understand what is going on and what is in the report, as well as their concerns. I do need to reiterate that I am not appointed by the government to administer anything. I was a member of the CLTSC which has now completed its work. While I do have a professional background in IF and the Planning, I sat as a parent and would be happy to talk to any other parent-parent to parent].

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

A late addition. As of Wed. the interim authority has been declared and I have been appointed as a board member for the transition period. This is not a staff position. For those who would like to see the report of the CLTSC I would urge you to look at the web site noted above.

Respectfully Your,

Tim Stainton, MSW, PhD
Associate Professor
School of Social Work and Family Studies
University of British Columbia
Vancouver, BC
CANADA
V6T 1Z2
[01] 604-822-9674

— END DR. STAINTON POST —

[FEAT BC Admin]

Press Release – Autism Society of Canada
***************************************************
October 21, 2002 — Quebec Human Rights Commission Supports Class Action by Children with Autism to Halt Systemic Government Discrimination A group representing hundreds of families of children with autism spectrum disorders announced today at a press conference that the Quebec Commission des droits de la personne et des droits de la jeunesse (Quebec 's Human Rights Commission) has informed them of its intention to intervene on their behalf in their class action suit against the Quebec Government. The families have undertaken this legal action to put a halt to the Quebec Government's systematic discrimination which has been denying their children a medically necessary treatment, intensive behavioral early intervention. Only last week, a British Columbia Court of Appeal ruling against the BC Government established a clear precedent that it is discrimination under the Canadian Charter of Right and Freedoms for a provincial government to not provide medically necessary fully funded intensive behavior intervention for children with Autism Spectrum Disorders of all ages as long as deemed beneficial by the child’s physician.

By rejecting the Government of British Colombia's appeal of the BC Supreme Court’s Auton decision, the BC Court of Appeal’s ruling on October 9 has provided additional support to the Quebec parents' class action suit. The unanimous decision upheld the Auton decision which requires the BC Government to provide intensive early behavioral intervention, as a medical necessary treatment, for children with an Autism Spectrum Disorder (ASD). It has also opened the door for legal action on behalf of many thousands of children with autism conditions in various provinces in Canada who currently are being denied treatment. The Court of Appeal also extended the decision so that even school age children with Autism Spectrum Disorders, through court intervention if necessary, will be able to access such intervention if requested by the family physician (with the written support of a neurologist or psychologist), with non-compliant civil servants facing possible contempt charges. This decision will be go a long way to compel provinces and territories, such as Quebec, that have been unwilling to finally provide effective autism treatment to provide it regardless of severity, specific diagnosis or age.

The court decision is all the more important given the rapid increase in the number of children diagnosed with autism conditions (63% increase from 1999 to 2001 in Canada ). It is widely recognized that early intensive behavioral intervention can significantly improve the functioning of children with autism, which the BC Court of Appeal noted in its decision, and is critical to avoiding an otherwise bleak institutionalized future. Effective treatment provision will help to reduce lifelong costs to governments (cost-effectiveness research indicates by 50%), and will reduce the human suffering of people with autism conditions and their families. Because appropriate services are generally not available, human suffering associated with autism conditions in Canada is profound

Two Canadian courts have now spoken: not providing effective treatment in the form of intensive behavioral intervention to people with Autism Spectrum Disorders is discrimination under the Canadian Charter of Rights and Freedoms. Autism Society Canada, therefore, throws its full support behind the legal action undertaken by the Quebec Autism Class Action Committee.

[FEAT BC Admin]

From Globe and Mail, http://globeandmail.com, October 18, 2002
______________________________________________________________

Treat, says the court

Friday, October 18, 2002 – Print Edition, Page A18

Universality is at the heart of Canada's publicly funded
health-care system. No one is denied the care he or she
needs because of inability to pay. Regrettably, in the case
of autistic children in British Columbia, what should have
been a political matter became a legal one. The B.C.
Court of Appeal insisted unanimously this week that the
province pay for a specialized treatment for these
children.

But the fault rests with the government. It failed to grasp
the situation of children whose autism is characterized by
profound withdrawal. Without the treatment, they are
condemned to a life of isolation. With it, they have a
chance to live meaningfully among their peers. What
could be more necessary than that?

As a general principle, the courts should leave funding
issues to elected officials. Those officials are accountable
to the electorate; the judges are not. Legislators also have
a greater ability to hold public consultations before
making their decisions. In particular, given the need for
fiscal responsibility, the court was unwise in this case to
order the government to pay $20,000 in symbolic
damages.

The funding for the autism treatment is not cheap. The
intensive program ordered by the court — the only
treatment known to be effective — involves 40 hours a
week of one-on-one behavioural therapy, and costs
$45,000 to $60,000 a year for each child, for two to three
years. Since roughly one child in 1,000 suffers from
autism, that could mean about 200 B.C. preschoolers at a
time could benefit — a total cost of as much as
$12-million.

On the other hand, more than 90 per cent of untreated
children are placed in group homes or other institutions,
at a cost that may exceed $100,000 a year. Only one in
64 children will improve without treatment.

The savings in denying treatment are therefore illusory.
Of the four children whose parents brought the B.C. legal
challenge, after struggling to pay for the treatment
themselves, three were able to enter mainstream school
classrooms.

There is a strong argument to be made that, when the
courts step in to order services, they open the floodgates.
Today it may be autistic children. Tomorrow it might be,
say, fertility treatments for individuals or couples who are
unable to conceive on their own.

But British Columbia raised the floodgates argument in
1997, when, in a precedent-setting case, the Supreme
Court of Canada ordered hospitals to provide
sign-language interpreters for deaf patients. B.C. argued
that virtually everyone with an unmet medical need
would be seeking a court order for the treatment. It didn't
happen.

In the end, the B.C. court case shows how difficult it will
be to control health-care costs by trying to limit insured
services at the margins (or to the marginalized). To deny
one group of children a necessary treatment in a universal
system is to deny their worth as human beings. That is
what makes it a constitutional matter. Universality does
not mean everything — but it does mean everyone.

[FEAT BC Admin]

From Toronto’s globeandmail.com., front page, 10/17/02
***************************************************
Court tells B.C. to pay for therapy

By KIRK MAKIN

JUSTICE REPORTER

Thursday, October 17, 2002 – Print Edition, Page A1

The British Columbia Court of Appeal has become the
first court to direct how health-care money should be
spent, in a landmark ruling ordering the province to
provide intensive treatment for autistic children.

Siding with four sets of parents who had been denied an
expensive therapy, a 2-1 court majority said they had no
choice but to forcibly reorder government health-care
priorities.

The judges made it clear that when constitutional rights
and the welfare of children are at stake, penny-pinching
governments lose their monopoly over budgetary
decision-making.

"This case shows that the courts are prepared to
recognize positive rights under the Charter — such as
rights to government funding — and are prepared to back
it up with mandatory orders to government,"
constitutional lawyer David Stratas said yesterday.
"This is about a right to health care," he said in an
interview. "It is a significant step forward."

Not content to simply order intensive therapy costing
between $40,000 and $60,000 a year, the appeal judges
awarded the parents "symbolic" damages of $20,000
each. They also stressed that they are prepared to enforce
their order if the province fails to come through with
proper therapy.

"This is broader than just striking down legislation and
having legislatures pass new legislation," Mr. Stratas
noted.

Autism is a neurobehavioural syndrome that affects 10 to
15 out of every 10,000 children. Symptoms, which
include disordered thinking and erratic behaviour,
typically appear when children are 2 or 3.

Left untreated during a window of opportunity that lasts
just a few years, most autistic children are doomed to a
lifetime of social dysfunction and isolation. Many end up
being institutionalized.

Funding of autism therapy varies from province to
province. Many children with the diagnosis get little or
no treatment because they are beyond the upper age
range for treatment — usually around 6 — before they are
selected.

David Corbett, a Toronto lawyer who is scheduled to
battle the Ontario government over autism funding next
spring, said yesterday that he hopes the B.C. decision
induces other provinces to do "the right thing" and stop
putting money ahead of children's health.

"I think the court is saying that it is very difficult to draw
the line on health-care services, but that leaving this
service out was just plain wrong," Mr. Corbett said.

The B.C. court specified that the province must supply
funding for Lovass Autism Treatment, an intensive and
time-consuming technique that is considered the most
effective therapy available.

"Having created a universal medicare system, the
government is prohibited from conferring those benefits
in a discriminatory manner," the court said.

The ruling, which went virtually unnoticed after being
released last week, is rooted in equality guarantees
enshrined in the Charter of Rights as well as the inherent
duty of courts to look after the interests of children.

The court said that the province failed to justify treating
autistic children as if they were "less worthy" of medical
assistance than non-autistic children.

"It is to say that the community is less interested in their
plight than the plight of other children needing medical
care and adults needing mental-health therapy," said
Madam Justice Mary Saunders and Mr. Justice John
Hall.

While they expressed sympathy with government
arguments that the courts ought not to be dictating
health-care priorities, the judges said that the
consequences of not treating autism in a timely manner
are unacceptably grave.

Mr. Stratas predicted that the ruling will encourage a
broad range of litigation aimed at establishing that other
health-care priorities are unequal or unfair.

"I see it opening up claims by others with special needs
that are being overlooked and that are seen as being less
worthy of assistance," he said.

Mr. Stratas said that since the therapy is really a form of
education, the ruling also suggests that the court has
recognized a right to state-provided special education for
the mentally disabled.

He added that former Saskatchewan premier Roy
Romanow, who is nearing the end of a major study of
health-care delivery, will now have his work cut out for
him divining how far the courts intend to go in future.

"This case underscores the fact that he will have to
formulate recommendations in an environment of legal
uncertainty, where any reforms that restrict access to
medical treatment for budgetary reasons will be met with
legal challenge," Mr. Stratas said.

For critics of judicial activism, Mr. Stratas said, the ruling
is likely to be infuriating.

"This sort of thing is a red flag to those who feel that in
an era of increasing demands and competing priorities
over scarce financial resources, our elected
representatives alone should decide how those resources
should be distributed," he said.

[Author]

Posts