[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.

 

---

—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

---

How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[David Chan]

OMG who was that guy from Victoria that just appeared on CTV
late news, and what planet is he from. HOW could anyone say
that something to the effect of , and I paraphrase" Resources are
scarce, so even though the outcome is tragic, the court's
decision not unethical" with a straight face too.

What the h___ kind of double speak is that, and how do get a
PHD so you get to make comments like that, cuz I like to sign
up.

I hope he feels the same way when they find something wrong
with HIS prostate.

Completely dumbfounded
Mr. P's Dad

Wow, there are people like that in charge, you're kidding me
right

[Pam Mihic]

Just to add to Michelle's post….

My son was also told that the treatment would not work for him because he was too old. We started his program when he was 14. At that time, he was in grade 8 in a segregated and modified (no report card marks) program. His 'duties' included collecting the attendance folders from other classes. "Integration" in elective courses consisted of him sitting all by himself at a table in art or foods class. He was sworn at, had pencils,erasers, etc. thrown at him, and was physically assaulted by other students. Our concerns were dismissed by the school administration.

We started our ABA program at the end of grade 8. Aside from academic skills, our program focused on social skills such as developing conversation, assertiveness, problem-solving, etc. We also decided a fresh start at a new school was appropriate. Today, he is in grade 12 in a fully-integrated regular program with limited SEA support. He is graduating with a 3.5 (B+) average and will be starting a preapprenticeship trade program in February 2005 at a local university/ college. He is the first person with special needs to be accepted into the program from our school district. Although he is still very shy, he is well liked and respected by other students who go out of their way to make him feel welcome. He is a member of the school's cross country team, student council, and global issues club. It has been a lot of hard work but we have his dedicated therapists (two in particular who have been with us for the past 3 years), his amazing consultant, and Sabrina (for encouraging us to go the ABA route) to thank.
It's unfortunate that the government and SCC can't look at the long term implications of their short-sighted decisions.

Pam Mihic
(N's mom and proud of it)

[Barbara Rodrigues]

This is a press release from lawyers in Ontario – I think it is wonderful – too bad the Supreme Court of Canada didn't understand the law and constitution as well.

Press Release: November 19, 2004

Orillia, Ontario

Auton Decision Devastates Needy Families

For the 105 families our firm has been retained to represent, the decision of the Supreme Court of Canada in Auton is astonishing from a legal perspective.

The Court has chosen to firmly entrench the age old chestnut supporting the separation of law and governance. The Court will not intrude or make an unwarranted incursion into government policy. It will only do so where there is clear evidence of a government breach of citizen's rights under the Charter of Rights and Freedoms.

But the Court has effectively narrowed the scope of Charter remedies available to citizens in this regard by saying that a political decision
to spend money trumps an individual's Charter rights, no matter how compelling. This cannot be what Parliament intended when enacting the Charter.

In terms of discrimination, the Court astonished us by failing to consider the bricks and mortar of these claims- the evidence clearly established that the treatment is both necessary and proven effective,Instead the Court mistakenly focused on the notion that the treatment was "novel".

However, all is not lost. Even thought the Supreme Court "got it wrong", in our view, the most important revelation from the Auton decision for these families is that the Supreme Court simply did not find evidence of
discrimination in the Auton case, The door has thus been left open for a Court or Tribunal to find discrimination on the evidence before it.

For these families, it is insultingly trite to note that if a child in Canada is diagnosed with any other disability than autism and needed a
particular treatment in order to access core public services- and indeed to enjoy the dignities of life- the government would not hesitate, and has not hesitated, to provide such treatment. The blow to families of individuals living with autism through thise decision is thus substantial. These families will consider this conservative decision to be a further indicator of systemic discrimination permeating throughout the justice system.

This is not the end of the fight for these individuals. The families we represent (and their numerous advocates) will be reacting to this decision politically-with their collective voices, intellect and – when it comes time once again to vote- their feet.

We await the decision of Justice Kitely in the Wynberg and Deskin trial court matters to further guide us in our current proceedings. These cases deal with claims of discrimination against the Ontario government in relation to an alleged failure of the Ontario government to provide equal treatment to autistic children, and a decision is expected at the end of December.

We will continue to pursue remedies for these families from the Ontario Human Rights Tribunal and from the lower courts where many important
issues continue to be relevant and the legal tests distinct. From our perspective, the treatment of vunerable individuals as economic factors in government decision-making is inherently reprehensible and our outmoded legal system must rise to the challenge of achieving real justice.

-30-

Contact: Ellie Venhola, Barrister and Solicitor (705) 326-6444 ext. 27

[Alan Campbell]

To all of those involved in this long fight, that didn't go the way it should have….THANK YOU.
We will continue on this journey, this government has an election coming up on May 17, 2005. Our MLA's certainly haven't heard the last from us.
As far as Gordon Campbell's comments, I do believe he made a statement that he wasn't going to cut us off our current funding, but that weasel did sneak out a kitchen door to avoid reporters after a luncheon he was attending….coward.
Once again thanks to all…we will continue this fight,
Cindy & Alan Campbell
(Elizabeth's parents)

[Ursula Lee]

I also sent this longer version, which at 1000 words, I doubt will be published, but syas things much better.

Editor,
It was with great sadness that I learned of the Supreme Court of Canada's decision to deny autistic children funding for potentially life saving treatment. While autism is not in itself a life-threatening condition, it is certainly a threat to the quality of life of a child and a profound barrier to the development of a child's full potential for engagement in and contribution to society as we know it. Notwithstanding the exorbitant cost of evidence-based treatment, it is incumbent on us, as members of a humane society, to consider the plight of the most vulnerable among us, and ask if we can do better.

The reason given for denial of funding is that treatment for autism was not deemed to be "medically necessary", which, in my opinion, is open to interpretation. Let me draw an analogy. It has, not infrequently, been suggested that if one were to replace the word "autism" with "cancer" in any given context, that the gravity of the situation may be made clearer. Cancer, after all, is an entity that most people understand and that many have been touched by. Autism, on the other hand, is an "invisible disability" , the pathology of which has not been entirely elucidated. These children are beautiful, they look so "normal", how could they be disabled? However, cancer is indeed an apt analogy. Cancer is a disease characterized by abnormal and disordered growth of cells that cease to respond to normal mechanisms of regulation in the body, as a result of genetic mutations. Autism is a neurologically based disorder that is associated with abnormal and disordered growth of brain cells. There is a strong genetic correlation in that the concordance rate for identical twins is about 90% and some genetic mutations (eg. Fragile X syndrome) have been associated with autism. Research in autism has shown that outcomes are best when interventions begin at earlier ages compared with older aged children. Cancer is curable if detected at an early stage. In some cases, cancer that has apparently been eradicated recurs, sometimes with a recurrence rate as high as 50% – 70%. This is not a deterrent to administering treatment to patients who wish to receive it. Cancer that is not eradicated will advance and ultimately (in most cases) cause death. Similarly, in the case of autism, evidence in the literature suggests that early and intensive intervention results in optimal outcomes. Autism that is not effectively treated will result in a lifelong disability which in many cases prevents the individual from participating fully in society. There is treatment available which could result in "cure" rate as high as 47%. By "cure" I am referring to the ability of the affected individual to participate in society to the full extent of his or her potential. In the case of cancer, a recurrence rate of 50% is not a deterrent to providing treatment. In many cases, the evidence for cancer (and other medical) treatment is based on best-available evidence, not necessarily "gold standard", when this is not available. There may be many reasons for why theoretical gold standards (double-blind, placebo-controlled, randomized, clinical trials) are not available. In some cases, because of currently available information or evidence, a "no treatment" arm is not acceptable to patients. Or the number of patients required to conduct the study is so high that it could not be achieved in a timely fashion. Or the costs of conducting the study is prohibitive. Many clinical trials could not be done without the funding provided by pharmaceutical companies hoping to cash in on their drug of interest. In the case of autism, all these reasons apply when it comes to answering why there is "no evidence" or lack of evidence to support certain treatment options. Indeed, many cancer treatments are based on "best available evidence", and this is acceptable to practitioners, patients and society. In the case of autism, the New York State Department of Health did just that – they reviewed the available evidence and recommended treatment based on the available evidence. Yet this seems to be insufficient for the gatekeepers that decided who does or doesn't receive funded treatment.

It is a fact that the bulk of health care dollars is spent on patients with chronic, incurable conditions such as diabetes, heart disease and cancer, and /or on patients in the last stages of their lives. Most cancer drug treatments are not curative. Yet the bulk of cancer treatment costs are in administering expensive drugs that run in the millions of dollars that are intended to improve quality of life (without necessarily increasing quantity of life) or provide potential prolongation of life by months (at best), in most cases. As a humane society, we have decided that this is an acceptable cost to bear. Contrast this with autism. This is also a lifelong condition. Effective treatment is available (based on best current evidence). But it is not glamorous. It doesn't have the backing of large pharmaceutical companies that could profit from a new drug. There is precious little funding for research. There are no powerful lobby groups that could be hired to sway government representatives. Treatment, like most medical conditions (and not just cancer) does not result in a guarantee of "cure". But diabetes, or heart, or cancer patients are not denied medical treatment because cure is not guaranteed. (In the case of some cancers, treatment is recommended based on anticipated improvement in survival of 3% (yes, three percent)). Nor are they denied treatment because "gold standard" research results are not available. They receive treatment based on best available evidence. Why then, are autistic children denied treatment that could result in improvement for a significant proportion of children? We are willing to spend millions of dollars on end-of life care. Yet, these children, at the beginning of their lives, are denied a chance at expressing the full potential of their abilities. What, as a society, does that say about the value and worth we place on these little lives, with their whole life ahead of them?

Ursula Lee

Disclosure:
Ursula Lee is a physician who is also the mother of an autistic child.

[Ursula Lee]

here is the text of a letter I sent to Globe and Mail, Vanc sun and Province. Hope one will publish.

Editor,
Re: Supreme court decision (Nov19/04) on not funding autism treatments.

It has been suggested that if one were to replace the word "autism" with "cancer, that the gravity of the situation may be made clearer. Cancer, after all, is an entity that most people have been touched by. Autism, on the other hand, is an "invisible disability". These children are beautiful, they look so "normal", not "sick". Yet, cancer is an apt analogy. Cancer is a disease of abnormal cell growth resulting from genetic mutations. Autism is a disorder of abnormal growth of brain cells with a strong genetic correlation: the concordance rate for identical twins is about 90% and some genetic mutations (eg. Fragile X syndrome) have been associated with autism. Outcomes for cancer are best when treated at an early stage. Research in autism has shown that the best outcomes are attained when interventions begin at earlier ages compared with older aged children. Cancer that is not eradicated will advance and (in most cases) cause death. Autism that is not effectively treated will result in lifelong disability which in many cases prevents affected individuals from participating in and fully engaging with society.
The bulk of health care dollars spent on direct patient care, is expended on patients with chronic, incurable conditions such as diabetes, heart disease and cancer, and /or on patients in the last stages of their lives. As a humane society, we have decided that this is an acceptable cost. Contrast this with autism, where known effective treatment that could benefit a significant proportion of children is denied. We are willing to spend millions of dollars on end-of life care. Yet, these children, at the beginning of their lives, are denied a chance at expressing the full potential of their abilities. What, as a society, does that say about the value and worth we place on these little lives, with their whole life ahead of them?

Ursula Lee

Disclosure:
Ursula Lee is a physician who is also the mother of an autistic child.

[Lis Louwrier]

There are no words that could express the deep gratitude I feel towards those who have fought in this long battle. I wish to thank you for fighting for the funding my child has received and benefited from. He has an opportunity to break free from the solitude of autism as a result of your struggles. I believe that one day he will ask me what he should be when he grows up and I will say "good and decent" like the Auton's, Freeman's, and all who know what it means to be part of this earth not simply an occupant of it.

Thank you.
Lisbeth Louwrier (Ryan's mom)

[Deleted User]

Does this court decision mean that the BC government can now choose to keep the current funding levels or decrease them when the current contracts are up? My understanding is that they would have to honour the current contracts that families have signed. Do you think they would remove the current level of funding? I guess we need to start writing our MLA's – especially with an election coming.
What did you think of Gordon Campbell's comment's on this? He made some vague comments about not letting the kids down – and something about individualized funding. It makes me nervous though.

[Deleted User]

Does this court decision mean that the BC government can now choose to keep the current funding levels or decrease them when the current contracts are up? My understanding is that they would have to honour the current contracts that families have signed. Do you think they would take back the funding? I guess we need to start writing our MLA's – especially with an election coming.
What did you think of Gordon Campbell's comment's on this? He made some vague comments about not letting the kids down – and something about individualized funding. It makes me nervous though.

[Debbie]

to all those involved in this fight for our children, from the bottom of my heart i would like to thank you for all the time that has been spent just to get what we have now, this little amount they call funding,without an aba program,my son would definitely not be where he is at in his everyday living,we are all happier,when i was aware about autism, i was told of this wonderful funding i was entitled to, then i was to find out what some of you incredible parents have been through in these last years to get us this funding,my family thanks you, and god will pay you back, so we will conquer,
thank you,,,,,, debbie dj's mom

[Author]

Replies