[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

[Deleted User]

Write your letters now!! After all the hard work
done by Featbc, I think we are on the verge of
getting something. I was just in Gordon
Hoggs office (Minister for Children and
Families Development) and his assistant told
me that two more people faxed in complaints
about the substandard EIBI programs and
demands for funding of proper Lovaas
treatment programs. More letters will keep
this headache pounding for Hogg.

Gordon Hogg is very aware of the situation. I
personally sent a letter explaining why I have
turned down the Delta EIBI program on the
basis of total lack of training of the consultants
(they have NO ABA background but wanted to
program my son's ABA therapy??) and that I
refuse to fire my experienced therapists in
order to hire their poorly trained therapists. I
am bringing Hogg a description of what
training a real consultant would have (WEAPs
requirements). So all YOU have to do is write
a letter saying that you are disgusted too and
that you want your program funded. Gordon
Hoggs fax number is (604) 541-4551.

Secondly, Contact the Children's
Commission. I have a complaint accepted
that is currently under review. Basically, my
complaint is that I have the right to have my
program funded.

What I did to make the complaint was I
phoned the children's commission at
1-800-859-1441 and asked them what to do. I
had to first file a complaint with the MCF
quality assurance person (the children's
commission gave me the person in my area)
and once I got admission from him that he
could not accomodate me, I was able to make
my complaint. By the way, try to do everything
through letters, and cc it to Gordon Hogg. In
the letters, write the dates that you expect
replies (the ministry will prolong things
otherwise).

My complaint is the third one to go before the
children's commission. Can you imagine if
they were to receive 50 complaints?

If you don't feel you can write letters, call the
childrens advocate at 775-3203 (possibly only
a lower mainland number). Edna Tepper has
all of the letters I have written and they may be
able to write letters for you. If you, too, get a
complaint accepted by the children's
commission you can e-mail me and I'll let you
know how things are going:
nrwiklo@uniserv
e.com

Two actions by you may make a difference for
your family. Two actions by a lot of us, may
make a difference for all those autistic
children who need ABA therapy.

Just do it!
Nancy (Casey's mom)

[Deleted User]

Does anyone have any info on the EIBI program and what the government is now saying it will be comprised of? Are the liberals making significant changes to it? I understand the government is accepting proposals in regards to delivering EIBI from local special needs service providers, behavioral consultants(ministry contracted consultants), etc.. I find this both discouraging and alarming considering the lack of expertise these service providers have in this area.(Though at least one local service provider has approached me asking what a proper aba program should look like and in comparison what are the government pilot projects doing and how great is the difference). What can we do as the recipient families of these services to ensure that somewhere down the line they may be adequate for treating our children? My son is seven and we are starting with WEAP in a month or so I ain't waiting for the gov. to come up with something better but I know many other families in our small community who have younger ASD children and lack the means to afford consultants or therapists, they also lack education of the efficacy of quality aba services.

Alex Barclay
Sunshine Coast
thujalog@home.com
604 487 0048

[Sabrina Freeman]

CTV National News should be running a story about a mom in Nova Scotia who has launched a law suit against the provincial government to secure funding for Lovaas … should be interesting.

Anyone interested in reading her ‘statement of claim’ can get it at http://www.accesswave.ca/~dassonvillelaw/
Sabrina

[Paul Thibodeau]

Dear friends and colleagues:

For the past 10 to 25 years, the efforts of many parents of autistic children have yielded more frustration than results. However, now we are achieving some positive and noticeable results:

a.. The media is providing increased coverage of children issues including those of autistic children.
a.. The Federal and Provincial governments and the school boards are presently committing large amounts of money to this issue.
a.. The courts are ruling that governments are failing to meet their constitutional obligations.
Now we have reached a cross roads and we must make a choice if we are to proceed:

a.. We can be complacent, do nothing and let others do whatever they want to do on their own. (I believe this will likely cause a reversal of our progress);
a.. Some of us, on our own, could do something. (In all likelihood this will produce lovely response letters but nothing more for autistic children);
a.. Join forces once again (all of us this time, with no exceptions) and intensify the political pressure).
ACTION NEEDED.

It seems clear that the actions initiated by governments and bureaucrats are more political in nature than for addressing the specific needs of young and autistic children.

Thus, since we seem to have finally obtained the attention of the media and politicians, quick action on our part is needed if this issue is ever to be resolved quickly and satisfactory for the well being of autistic children and their families.

For this reason, I ask of you, once again, not to give up too quickly. Let's all combine our efforts and (I mean all with no exceptions this time) send the following e-mail (as is or modified to reflect your own concerns and situation) to the Health Minister (Currently, the Hon. Allan Rock. Rumors are that he could be replaced soon. If this is the case, you may have to send it to the new Minister and make minor adjustments before sending it).

Please also send copies of your e-mail to at least 10 other politicians (mainly opposition leaders and Health critics, Federally and Provincially, your own M.P., M.P.P./M.L.A., and the media.)
I also request that you ask 5 friends or relatives to do likewise. If we all do our part, this time, it means that the politicians' offices will, collectively be flooded with some 6,000 messages. Since, according to available statistics, there are over 10, 000 autistic children in Canada, this represents about 1 letter for every 2 or 3 Canadian autistic children. I am sending this e-mail to over 100 families.

REMEMBER!

a.. Collectively, politicians are very sensitive to concerns expressed by a large number of voters in a relatively short period of time.
a.. Send your e-mails now and ask your friends and relatives to send theirs without delay.
a.. Remember, we are doing this for our autistic children. Do they deserve anything less?
– – – – – – – –

ADDRESSES.

The Hon. Allan Rock, Federal Health Minister,
Brooke Claxton Bldg., Postal Locator 0916 A,
Ottawa, Ontario, K1A 0A6
Minister@www.hc-sc.gc.ca

The Rt. Hon. Jean Chretien, Prime Minister,
Room 309-S; Center Block, House of Commons,
Ottawa, Ontario, K1A 0A6
pmo@pm.gc.ca

The Hon. Paul Martin, Finance Minister,
Room 515-S; Center Block, House of Commons,
Ottawa, Ontario, K1A 0A6
Martin.P@parl.gc.ca

The Hon. Martin Cauchon, Revenue Minister,
Room 515-S; Center Block; House of Commons,
Ottawa, Ontario, K1A 0A6
cauchm@parl.gc.ca

The Hon. John Manley, Attorney General,
Suite 211;1883 Bank St., Ottawa, Ontario, K1V 0W3
Manley.J@parl.gc.ca Manlej@parl.gc.ca

Ms. Marlene Catterall, M.P.,
Room 451-S; Center Block, House of Commons,
Ottawa, Ontario, K1A 0A6
catteM@parl.gc.ca

Mr. David Pratt, M.P.
Room 325; Confederation Bldg.,
Ottawa, Ontario, K1A 0A6.
davidpratt@lgs.net

The Rt. Hon. Joe Clark, Leader (P.C.),
436-N; Center Block, House of Commons,
Ottawa, Ontario, K1A 0A6
Clark.J@parl.gc.ca

M. Andre Bachand, Health Critic (P.C.)
BachaA@parl.gc.ca

Mr. Joe Peschisolido, (Mr. Day's office)
peschisolido@canadianalliance.ca

Ms. Diane Ablonczy, Health Critic (C.A.),
ablonczy@cia.com

Ms. Alexa McDonough, Leader (N.D.P.),
Room 442-N; Center Block, House of Commons,
Ottawa, Ontario, K1A 0A6
ndpadmin@fed.ndp.ca

Ms. Judy Wasylycia-Leis, Health Critic (N.D.P.),
wasylj@parl.gc.ca

M. Gilles Duceppe, Leader (B.Q.),
Room 533-S; Center Block, Hoyuse of Commons,
Ottawa, Ontario, K1A 0A6.
ducepg@parl.gc.ca gduceppe@block,org

M. Real Menard, Health Critic (B.Q.),
MenarR@parl.gc.ca

The above (all Federal M.P.'s) require no postage for regular mail.

The Rt. Hon. Roy Rominow, Head,
Commission of the Future of Health Care in Canada,
Phone:- 1-800-793-6161,
Room 304; 123 2nd. Ave. South,
Saskatoon, Sask., S7K 7E6.
NO E-MAIL ADDRESS… you must record your concern on the web at http://www.healthcarecommission.ca

– – – – – – – –
To the Hon. Allan Rock, Health Minister.

This is for your information and consideration by the Liberal Government.

Last Fall, the Federal Government has announced that it was committing $ 21.1 billion to strengthen Canada's Universal Health Care System. Over $ 2.2 billion was allocated for services to the youngest of our children. I also note that, you would like a better integrated health system that expands services to areas now falling between the cracks, and that you would like these medical services to fall under Medicare. (Ottawa Citizen, January 27, 2000). You also stated in the House of Commons on April 25, 2001, that Canadian Citizens have the right to get the best medical treatments available.

You and the Liberal Government deserve to be congratulated for this initiative. Of course, I assume that this is to include, under the Canada Health Act System (services currently falling between the cracks such as) specialized Intensive Early Intervention (IEI) therapy treatments for autistic children by properly trained and qualified medical practitiomners/providers.

As you probably already know, autism is not a rare medical condition. It is one of the most severe developmental disorder of childhood, occurring in at least 1 in 1000 children and reportedly to be on the increase. Many autistic children can be dramatically improved when they receive "IEI" therapy treatments (by properly trained and qualified therapists.(Ontario Ministry of Community and Social Services).

For all practical purpose, in Canada, properly trained and qulaified practitioners to deliver the necessary "IEI' therapy treatments to autistic children are relatively non-existent. (confirmed, in writing, April 5, 2000, by former Ontario Health Minister, the Hon. Elizabeth Witmer, and on July 26, 2000, by the BC Supreme Court, Docket C984120).

Yet, these specialized medical practitioners have been available in the U.S. and many other countries, including England, Norway, Iceland, and Israel, for some 30 years.

Numerous cost-benefit studies indicate that the cost to society of untreated individuals is seven to ten times greater than of those who receive essential "IEI/ABA" treatments. e.g. Jacobsen/Mullick, Behavioral Intervention, 1998, Journal.

Consequently, a small number of families, with proper financial means, enlist the services of U.S. based consultants and train their own therapists. This is very costly. These costs are rarely, if ever, covered by provincial Medicare plans. Thus, most Canadian autistic children are denied access to the necessary medical treatments for their condition. Briefly, they are denied their constitutional rights.

The new CC&RA (Revenue Canada) randomly reassesses taxpayers who claim medical expense tax credits for the provision of intensive behavioural therapy to children. This is inconsistent with the prupose of the Canada Health Act and the income tax Act's medical expenses tax credit. The Government of Canada should immediately investigate whether the medical expense tax credit should be overhauled to prevent the failure of provincial governments from living up to the principles of the Canada Health Act from depriving Canadians of the tax relief the medical expense tax credit was designed to provide.

I suggest that what is currently lacking and badly needed is:-

1)- Availability of "IEI/ABA" therapy services by properly tained and qualified therapists to deliver the necessary specialized medical services required by young autistic children;

2)- Availability of properly trained and qualified teacher assistants for autistic children of school age;

3)- Availability of properly trained an qualified speech therapists specialized in the treatment of autistic children;

4)- Availability of special training schools to train the above-mentioned medical providers/practitioners, and

5)- The costs of the above to be covered by the federal and provincial government under the Canada Health Act.

Several Canadian courts have ruled that the federal and provincial governments are failing to meet their constitutional obligations.

Here are four instances:

1)- BC Supreme Court, Docket No:- C984120, July 26, 2000.

2)- The Tax Court of Canada (Informal Procedures); 98DTC 3353.

3)- The Chief of Appeals, Halifax Tax Services Office (Objection filed April 22, 1998).

4)- The Alberta Court of Queens Bench (1996) No 760; Action No:- 961-05499.

I also want to point out that autism is not a Social Services issue nor is it a Social Services area of expertise – it is clearly a health issue. (Dr. Sabrina Freeman, Director, FEAT of BC; Me. Justice M.J. Allan, July 26, 2000, BC Supreme Court, Docket C984120, Vancouver Registry).

So Mr. Rock, as Canada's Health Minister, I urge you to live up to your promises to help our autistic and other children with developmental disabilities.

Yours truly

Your name Address phone number your e-mail address.

c.c. The Hon. Roy Rominow

[Linda Cucek]

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This is the web page address: http://members.home.net/cucek/

James Mom Linda Cucek

[Linda Cucek]

Please check out my webpage:

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James mom Linda Cucek

[Linda Cucek]

Please check out my webpage at:

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James Mom Linda Cucek

[Maureen St. Cyr]

Hope you've got a big house, Dave :-)

[David Bridges]

Hi Guys!

I, too. am thrilled. I shook Mr. Campbell's hand a few months ago at an AIDS fundraiser, looked him in the eyes and told him how strongly our group feels about this issue and how important it is to our children's and families' welfare. He told me flat out that they would fund Lovaas treatment and that they are on our side. That's pretty unequivocal, I'd say.
Nonetheless, let's stay vigilant as well as patient(a little), folks, because:
a)politicians are generally untrustworthy, and
b)the NDP has conducted scorched earth tactics with respect to fiscal policy; the mess the Liberals will have to clean up will be enormous, have no doubt about that.

Just a thought.
Dave Bridges

PS – the party is at my house the moment we get what we've been fighting for.

[Deleted User]

BC…
I sincerely hope that your new government keeps it word. You must feel as if a weight has been lifted from you.
We in Ontario are continuing to try to make changes to ensure " equal" access to neccessary medical treatment for autism is the standard not the dream.
Many of us would like to start FEAT Ontario, but as one person said it does seem rather overwhelming to do so.
If there is anything I think many of us here realize is that even " icing " can taste bitter if its made with the wrong ingredients as the " IBI" program in Ontario has been.
There needs to be a group here who will do for Ontario what you have for BC.
Anyway G-d bless and keep the good fight.
Norrah

[Author]

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