[FEAT BC Admin]

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.

 

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—-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

 

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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.

Topic

[Louise Taylor]

"Medicare for Autism Now" goes to the Health Minister's Riding

Another interesting day……Our FEAT team drove to Parry Sound yesterday which is about 1 hour from Huntsville, where Jean Lewis had an extensive interview with the editor of the North Star newspaper. They also met with the advertising manager who looks after all or most of the Muskoka papers, to discuss an advertising campaign. The local businesses etc. were also "papered".

In Parry Sound, some FEAT campaign literature was delivered to Tony Clement's constituency office. Unfortunately (or fortunately for him, perhaps), Mr. Clement was away at the time!

Jean Lewis also had another successful radio interview at 1:15 – 1:35 on CFRA.
___________________________________________________________
Following is the invitation for our event in Oakville on April 19th. Please send it to any contacts you have in Ontario.

"Medicare for Autism Now!" Rally

Saturday, April 19th, 2008

2:00 p.m. to 4:00 p.m.

Iroquois Ridge Community Center,

1051 Glenashton Drive,

Oakville, Ontario, L6H 6Z4

Why should you attend?

Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families from BC to Newfoundland and everywhere in between are still bankrupting themselves in order to provide treatment for their disabled children.
The current and limited patchwork of funding and services provided through the provinces’ social services ministries could evaporate tomorrow with a change of government, or the stroke of a bureaucrat’s pen. No legislation or mandate exists within these social services ministries to deliver health care or to protect and enshrine our children’s medically necessary treatment.
In 30 years of "advocacy", the only two initiatives which have achieved ANY success in obtaining treatment funding in any province has been litigation, and more recently, focused political action. Both were brought by volunteer parent groups.
Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. Autism has become an election issue in the U.S. – Senators Clinton, Obama and McCain have all articulated extremely progressive positions. In 2006, the U.S. federal government unanimously passed the "Combating Autism Act" which allocated $945 million into research and treatment. The U.S. federal government recognizes their responsibility to intervene by acting to avoid a major health and social crisis.
It is time for our federal government to recognize their responsibility to act! This is not a left or right issue – it’s a right or wrong issue!
Today, all over Canada, parents of children with autism and growing numbers of fair-minded, but outraged Canadian voters expect our federal government to act. We are letting those who govern and those who wish to govern know they will be held accountable, regardless of party affiliation, at the ballot box in the next federal election.

Who should attend?

You – and every fair-minded Canadian you know!

In Canada, children with autism and their families suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sake, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, kids, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

Come and find out how you can make your vote actually count!
Featured speakers will include:

Jean Lewis – Vancouver parent, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Harold Doherty – Fredericton parent, Maritime Co-ordinator for "Medicare for Autism Now!" initiative

David Marley – Vancouver supporter/advisor, B.C. Co-ordinator for "Medicare for Autism Now!" initiative

Stefan Marinoiu – Toronto parent, "Medicare for Autism Now!" supporter
Deborah Coyne – Toronto parent, "Medicare for Autism Now!" supporter

Please RSVP asap to: Jennifer O’Brien

Email: jobrien116@cogeco.ca

[Andrew Kavchak]

April 14, 2008

CTV – CANADA AM

TIME: 08:12:10 ET

Group wants autism covered universally under medicare

O'REGAN: Fighting for autism, a group from BC will be in Ottawa this morning to launch a nationwide campaign to elect members of Parliament who will support including autism treatment as part of medicare.

And joining us now from Ottawa to talk about the campaign is organizer Jean Lewis.

Good to talk to you.

LEWIS: Good morning.

O'REGAN: Firstly, what is the story right across the country? Health care is a provincial jurisdiction, and I'm just wondering, does it vary across the country, the amount of coverage for autism treatment?

LEWIS: Well, absolutely. The problem is, autism treatment isn't covered at all across the country. Currently, across Canada there is a patchwork of autism services that are not treatment. They're respite care, babysitting, childcare, those types of things. They are provided by the provincial social services ministry.

Right now, autism treatment — science-based autism treatment — is not covered. The Canada Health Act is federal legislation, not provincial legislation. So, we need children diagnosed with autism to have universal access to health care through medicare.

O'REGAN: Now, you have attempted this, as I understand, at the provincial level in British Columbia. How effective was that?

LEWIS: Well, we actually sued the provincial government, the BC provincial government, almost 10 years ago and won at the BC Supreme Court in the Auton landmark case, which eventually was overturned by the Supreme Court of Canada. And one of their main arguments was — or decisions was — is that it really is a matter for Parliament to decide how to spend health-care dollars.

So, we have taken the Supreme Court of Canada at their word and we've gotten political in a nonpartisan way. So, our campaign is to elect MPs, regardless of what their party affiliation is, who, if elected, will support legislation which will amend the Canada Health Act to include medicare coverage for the treatment of autism.

O'REGAN: What kind of response have you gotten amongst members of Parliament?

LEWIS: Well, it's very interesting. We started this campaign in the last federal election just in British Columbia in five ridings where in the previous election the margin of victory was less than 2 percent. And I have to say, in the five ridings that we initiated this campaign in it would be fair to say that we affected the vote in at least two of them.

We have now extended it. We are here in Ontario, meeting with parents and supporters and looking at some constituencies here. Also in the Maritimes.

So, we have captured attention. The MPs who were elected, who did publicly support us, have been actively assisting. Such as Peter Stoffer, Shawn Murphy, Andy Scott, Dawn Black. There are a number of them.

O'REGAN: So, what you're saying is if people do not support that position then you are recommending that people do not vote for them? If this is an issue that they consider a priority?

LEWIS: Absolutely. And I think it's important to understand that this issue no longer is just pertinent to parents of children with autism. We had a rally in Burnaby at the beginning of March where 400 people attended. And 25 percent of those people who attended were not parents of autistic children. They were other, fair-minded Canadians who are absolutely outraged that this has not been solved after this length of time.

After the Supreme Court of Canada decision in 2004, Ipsos-Reid did a poll: 89 percent of Canadians polled said that autism treatment should be in medicare. So, it tells you there is this huge disconnect between the voters and those who govern us.

O'REGAN: Thank you very much, Ms. Lewis, for your time.

LEWIS: My pleasure.

Jean Lewis, Director, BC Families for Early Autism Treatment (FEAT)

[Louise Taylor]

Medicare for Autism Now Campaign in Ontario.

Today on Parliament Hill in Ottawa, the press conference was held to kick off this campagn. Senator Munson, Senator Atkins, MPs – Shawn Murphy, Andy Scott and Dawn Black all spoke in support of Medicare coverage. Stefan Marinoiu, David Marley and Jean Lewis' presentations focused on our national political initiative. The press conference was well covered by media – CTV, Global, etc. CTV National News will cover the story tongiht.

[Louise Taylor]

Medicare for Autism Now Campaign heads for Ontario today!

Jean Lewis and David Marley will be arrivng in Ottawa on Monday and will be meeting there with parent, Stephan Marinoiu.

Their first scheduled appearance is an interview on CTV's Canada AM at 805 AM.

At 11 AM, they will be holding a press conference on Parlaiment Hill to announce their tour of Ontario, including the Minister of Health, Tony Clement's riding in Perry Sound- Muskoka. In attendacne at the press conference will also be Sen. Jim Munson, Sen. Norman Atkins, MP Shawn Murphy, MP Andy Scott and MP Dawn Black.

(The press conference will again be covered by CTV national news and will air Monday night, so stay tuned).

Then at 130 PM local time (1030 AM in BC) they will also be appearing on CHUM radio station in Ottawa, which should be available on the internet.

Please check back daily on the FEAT website or the "Medicare for Autism Now" blog for daily updates on the progress of the Ontario tour.

[Mike & Jean]

NEWS RELEASE

April 9, 2008For Immediate Release

Medicare for Autism Now! campaign returns to Ontario

Vancouver, BC: Jean Lewis, chief spokesperson for FEAT-BC’s Medicare for Autism Now! campaign today announced that she and others, including Stefan Marinoiu, of Toronto, will be traveling through Ontario, organizing parents and supporters as part of a national initiative to obtain Medicare coverage for autism treatment. They will be holding a news conference on Parliament Hill, in the Charles Lynch Press Theatre, at 11:00am on Monday, April 14th.

The news conference will be followed by a three day campaign swing through federal Health Minister Tony Clement’s constituency of Parry Sound-Muskoka, various media interviews in Toronto, on Friday, April 18th, and a concluding parent/supporter rally at the Iroquois Recreation Centre, in Oakville, beginning at 2:00pm on Saturday, April 19th. Making your vote count in the next federal election will be the central message to be delivered by a variety of speakers.

FEAT-BC’s Medicare for Autism Now! campaign is building a coalition of parents, active supporters and other fair-minded Canadians across our country. "The epidemic of autism and the urgent need for effective and affordable treatment is a major issue in the US federal election campaign. We aim to make sure the same thing happens in Canada because our children deserve no less", said Mrs. Lewis.

-30-

For further information, contact: Jean Lewis at 604-290-5737 or via e-mail: jean.lewis@telus.net.

[Isaac]

Hello everyone,

I would like to thank Andrew, very much, for his incisive post to the group. That he shares his thoughts with us is a sincere privilege.

"Since when is UCLA in Texas? It may sound trivial, but it is just one example of flaws that suggest to me that THE DECISION WAS MADE BEFORE THE HEARING and the briefings submitted by the families were simply not read." (emphasis added, by poster 'tamir')

Quite a bold suggestion, but hardly a trivial notion (i.e., a possible corruption of the highest court for policy purposes). I too am of the view — and have always been — that the outcome of Auton was predetermined, insofar as it was the sacred cow of Medicare under assault in the case. The ruling was an extraordinarily sloppy, find-the-nearest-exit type of judgment that actually overturned findings of fact (a big red flag AND a big no-no on appeal)

All powers that be in Ottawa were in full-blown panic mode, given the looming prospect of a successful use of the courts (and the Charter) to breach the walls of Medicare. The notion that the great unwashed can possibly influence health policy via the courts is anathema to policy makers, in the extreme. If Trudeau's vaunted Charter had to be trimmed back 'a bit' to achieve the objective of quashing the case (via a packed court) then so it had to be, in their view.

Chief Centurion at the gate, of course, was Irwin, significantly aided and abetted by health policy prostitutes from across the land, as discussed by Sabrina, in her weighty tome.

Isaac

—– Original Message —–

————————————————————
FeatBC Discussion Board: Room Three: Discussions about Government Topics
————————————————————

Posted by Andrew Kavchak (Kavchak) on Friday, April 11, 2008 – 6:16 am:

On Wedneday an announcement made (see below) that Justice Michel
Bastarache will be retiring from the Supreme Court of Canada. He was
appointed to the Supreme Court of Canada on September 30, 1997.

Some of you may recall that he was one of the Justices who supported
the disgraceful unanimous November 2004 written decision of Chief
Justice Beverley McLaughlin in the Auton case which effectively gutted
the equality provisions of the Charter and rendered them considerably
less than meaningful.

I frequently reflect on the sloppiness of the decision. When I
attended Osgoode Hall Law School in the 1980s many of my professors
routinely made fun of the "Supremes". I used to think that they were
unjustifiably disrespectful…but that was before I found out the hard
way just how truly defective our justice system is. My favourite part
of the decision was where McLaughlin wrote that so much of Lovaas'
groundbreaking work was done in Texas. Since when is UCLA in Texas? It
may sound trivial, but it is just one example of flaws that suggest to
me that the decision was made before the hearing and the briefings
submitted by the families were simply not read. Getting the facts
straight was immaterial detail that should not get in the way of the
court's desired outcome and the whole thing was not even worth some
elementary "fact checking" by an articling student.

Let us all mark and celebrate this retirement as it deserves to be!

Let us further pray that the next judge to occupy the seat will have
the wisdom, courage and sense of right and wrong to be able to
withstand the intimidation and culture of political correctness in
Ottawa and actually believe that "equality" in the Charter might mean
something.

One of the other elements of the shameful treatment of the Auton case
in Ottawa was that the federal Justice Department lawyers intervened
against the kids with autism. At the time the Minister of Justice was
"human rights lawyer" Irwin Cotler. I subsequently sent him a letter
asking him "how could you?", to which he replied that under the
Constitution his job was to advise the government. I gathered that
this meant that his "human rights" work would take a back seat to his
desire for a successful career in politics. His removal from the
Justice portfolio at the hands of the electorate was also an event
that was celebrated in some households!
_______________

OTTAWA, April 9, 2008 – The Rt. Hon. Beverley McLachlin, Chief Justice
of Canada, announced today that Justice Michel Bastarache has written
to the Minister of Justice, the Honourable Robert Nicholson, to advise
that he will retire at the end of the spring session of the Court,
effective June 30, 2008. "Justice Bastarache has served on the Court
with wisdom, and made enormous contributions to the Court and to
Canada. He is a valued colleague and a friend, who will be missed by
all the members of the Court", said the Chief Justice.

For his part, Justice Bastarache said, "It is a great honour and
privilege to be asked to be a member of the Supreme Court of Canada.
There are but a small number of jurists who have had the opportunity
to serve their country in this capacity, and to have had the chance to
participate so directly in the development of the law. I am extremely
grateful for the privilege of serving as a member of the Court."

Justice Bastarache was appointed to the Supreme Court of Canada in
September 1997, after serving on the New Brunswick Court of Appeal.

"I know that the Canadian Government will consider the appointment of
a new justice with the care and deliberation required", Chief Justice
McLachlin added. "I am hopeful that the appointment will be made in
time for the fall session of the Court, in October 2008."

For further information contact:

Jill Copeland
Executive Legal Officer
Phone: (613) 996-9296
Fax: (613) 952-3092

————————————————————

[Andrew Kavchak]

On Wedneday an announcement made (see below) that Justice Michel Bastarache will be retiring from the Supreme Court of Canada. He was appointed to the Supreme Court of Canada on September 30, 1997.

Some of you may recall that he was one of the Justices who supported the disgraceful unanimous November 2004 written decision of Chief Justice Beverley McLaughlin in the Auton case which effectively gutted the equality provisions of the Charter and rendered them considerably less than meaningful.

I frequently reflect on the sloppiness of the decision. When I attended Osgoode Hall Law School in the 1980s many of my professors routinely made fun of the "Supremes". I used to think that they were unjustifiably disrespectful…but that was before I found out the hard way just how truly defective our justice system is. My favourite part of the decision was where McLaughlin wrote that so much of Lovaas' groundbreaking work was done in Texas. Since when is UCLA in Texas? It may sound trivial, but it is just one example of flaws that suggest to me that the decision was made before the hearing and the briefings submitted by the families were simply not read. Getting the facts straight was immaterial detail that should not get in the way of the court's desired outcome and the whole thing was not even worth some elementary "fact checking" by an articling student.

Let us all mark and celebrate this retirement as it deserves to be!

Let us further pray that the next judge to occupy the seat will have the wisdom, courage and sense of right and wrong to be able to withstand the intimidation and culture of political correctness in Ottawa and actually believe that "equality" in the Charter might mean something.

One of the other elements of the shameful treatment of the Auton case in Ottawa was that the federal Justice Department lawyers intervened against the kids with autism. At the time the Minister of Justice was "human rights lawyer" Irwin Cotler. I subsequently sent him a letter asking him "how could you?", to which he replied that under the Constitution his job was to advise the government. I gathered that this meant that his "human rights" work would take a back seat to his desire for a successful career in politics. His removal from the Justice portfolio at the hands of the electorate was also an event that was celebrated in some households!
_______________

OTTAWA, April 9, 2008 – The Rt. Hon. Beverley McLachlin, Chief Justice of Canada, announced today that Justice Michel Bastarache has written to the Minister of Justice, the Honourable Robert Nicholson, to advise that he will retire at the end of the spring session of the Court, effective June 30, 2008. “Justice Bastarache has served on the Court with wisdom, and made enormous contributions to the Court and to Canada. He is a valued colleague and a friend, who will be missed by all the members of the Court”, said the Chief Justice.

For his part, Justice Bastarache said, “It is a great honour and privilege to be asked to be a member of the Supreme Court of Canada. There are but a small number of jurists who have had the opportunity to serve their country in this capacity, and to have had the chance to participate so directly in the development of the law. I am extremely grateful for the privilege of serving as a member of the Court.”

Justice Bastarache was appointed to the Supreme Court of Canada in September 1997, after serving on the New Brunswick Court of Appeal.

“I know that the Canadian Government will consider the appointment of a new justice with the care and deliberation required”, Chief Justice McLachlin added. “I am hopeful that the appointment will be made in time for the fall session of the Court, in October 2008.”

For further information contact:

Jill Copeland
Executive Legal Officer
Phone: (613) 996-9296
Fax: (613) 952-3092

[Barbara Rodrigues]

Posted by Andrew Kavchak (Kavchak) on Tuesday, April 8, 2008 – 10:26 am:

>From the medical news today website…

Frankly, I think they are low-balling it. When one parent gives up
their full-time job, or reduces their working hours to part-time
status, and the other spouse is so stressed out that they stop playing
the corporate game to get the next promotion, then it seems to me that
suggested annual income losses $6,200 does not even come close to
reality.
___________________________
Andrew:

I totally agree with you. We lost a lot more than 6200.00 per year when I had to give up my job – also my husband ended up having to take another position so that he could remain in town (rather than traveling) and that resulted in his wages being cut almost in half. So the impact not only of the cost of providing treatment to our kids but then the cost of not being able to work is certainly much, much more than this article states.

Thanks for posting it.

Barbara

[Andrew Kavchak]

From the medical news today website…

Frankly, I think they are low-balling it. When one parent gives up their full-time job, or reduces their working hours to part-time status, and the other spouse is so stressed out that they stop playing the corporate game to get the next promotion, then it seems to me that suggested annual income losses $6,200 does not even come close to reality.
___________________________

Childhood Autism Linked To Substantial Loss Of Household Income

08 Apr 2008

Families of children with autism incur substantial out-of-pocket costs for educational, behavioral and health care services. A new study in the journal Pediatrics found autism also has an impact on the income side of the family economy.

The study, "Association of Childhood Autism Spectrum Disorders and Loss of Family Income," drew on the results of a 2005 national survey of 11,684 households with children enrolled in kindergarten to eighth grade. The sample included 131 children with autism spectrum disorders (ASD) and 2,775 children with other disabilities. Researchers found both having a child with ASD and having a child with other disabilities were associated with lower household income regardless of parental education, family structure, parental age, rural or urban location or minority ethnicity.

The average loss of annual income associated with having a child with ASD was $6,200 or 14 percent of a family's annual reported income. The authors speculate the most likely explanation is that parents of a child with ASD make different working choices, such as working part-time, because of the needs associated with autism and the lack of community-based resources.

The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well being of infants, children, adolescents and young adults.

American Academy of Pediatrics
————————————————-

Article URL: http://www.medicalnewstoday.com/articles/103175.php

[Monika Lange]

I need the inside scoop on group homes in Victoria. Would you please email me your phone number and I'll call you. I would very much appreciate your help. monika.lange@hotmail.com

[Author]

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