[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

[Andrew Kavchak]

Autism came up in both the Senate and the House of Commons yesterday.
________________________________
Debates of the Senate (Hansard)
Wednesday, May 16, 2007

Autism Society of Nova Scotia

Cutback to Funding for Jobs at Summer Day Camp

Hon. Jim Munson: Honourable senators, I rise on a troubling issue. Today I will read excerpts from the Halifax Chronicle-Herald. As honourable senators know, autism is a passion in my life since committees here in the Senate issued a report Pay Now Or Pay Later, Autism Families In Crisis, dealing with families with children with autism.

The excerpts of the article are:

Autism group has no cash for camp.

More than 40 autistic Halifax children may be left home for the summer because of changes to a federally funded student job program.

The Autism Society of Nova Scotia found out Monday afternoon it will not receive money through Canada Summer Jobs to hire staff to run its summer day camp.

Society executive director Vicky Harvey is scrambling to try to save what she terms an 'innovative and special program.'.

For the past five years, the society has run a summer day camp in July and August.

'These are kids who are significantly affected by autism,' Ms. Harvey said.

Besides giving children aged six to 16 a chance to attend a structured program, it also gives their caregivers a summer respite. But since last year, the federal program has had a name change — it used to be called Summer Career Placement — and has been revamped.

Funding is determined by a point system. . . .

Last year the autism camp had 30 staffers. Seven of those positions were funded through Service Canada. . . .

As Ms. Harvey goes on to say:

'We just finished interviewing quite a few people.' It costs about $110,000 to run the camp.

She said that she would be very disappointed to feel that we could not run this camp again this summer.

I would like the new Government of Canada to take a deep breath, to take a look at these particular student placement programs, and take a look, for goodness' sake, at their own website, Summer Work Experience. It says:

Canada Summer Jobs, a new initiative, provides wage subsidies to help Canadian employers of not-for-profit, public sector, and smaller private sector organizations with 50 or fewer employees create career-related summer jobs for students between the ages of 15 and 30 at the start of employment.

The initiative is specifically designed to help students having trouble finding summer jobs because of where they live and/ or other barriers.

I urge you to take a look at your program and for goodness' sake take a look at what is going on in Nova Scotia, and listen.

__________________________

House of Commons

HANSARD

Wednesday, May 16, 2007

Summer Career Placements Program

Mr. Michael Savage (Dartmouth—Cole Harbour, Lib.):
Mr. Speaker, FANE is a francophone organization.

What can the minister possibly have against the YWCA, the Canadian Diabetes Association, the Canadian Cancer Society, the Elizabeth Fry Society, and arts groups, all of which are non-partisan, non-profit organizations across Canada?

Last year the Autism Society of Nova Scotia had seven positions. This year? Nothing.

Organizations like these have a question for the government: “Why is the government shutting us out?”

When will the minister restore full funding to this program? When will he do what is right for these organizations across Canada?

Hon. Monte Solberg (Minister of Human Resources and Social Development, CPC):
Mr. Speaker, I guess the question is why the previous government routinely shut out thousands of groups every year that it did not fund.

The member speaks of autism. I want to point out that the Autism Resource Centre in Moncton will receive $29,000 this year from this government. Previously it got only $9,000.

This government is stepping up to the plate, helping groups that need the help and, more important, making sure students get the work experience that they need to succeed.

[Isaac]

Hello Everyone,

Following up on recent commentary shared in this forum ("Canada's autism health policy amounts to all of a new website … AND, a symposium!" http://tinyurl.com/2jhyot), we learn today, yet again, that things are quite different South of the border.

The legislature in the State of Wisconsin, has proposed a new law intended to MANDATE health insurance coverage for autism (http://tinyurl.com/32erkq). Two obvious implications of this development are that a) Wisconsin's polity clearly deems autism treatment to be a health issue (not social services or special education), and 2) they view it as a reasonable notion that health insurance companies be legally required to provide coverage for the cost of autism treatment.

Meanwhile, back in Can'tada, the health insurance "companies" can rest easy, since they (the provincial governments) are both the overseer of health insurance AND the provider, all rolled up into one bloated, inefficient socialist package. Put another way, the proverbial government 'fox' is guarding the Medicare 'chicken coop', and kids with autism don't even get to visit the farm.

It's a serious problem that there is no proper, effective health insurance oversight in Canada. It is shocking to know that over 30% of the health budget is squandered. And that’s quite a big number, when one considers that fully 1/3 of the typical provincial budget goes to health.

However, Health Canada does assure us that they fully understand the urgency of the national autism epidemic and that they are "moving forward" on this important issue, with a new web site … AND, an autism symposium!

I wonder how much mileage this kind of government dithering and cynical spin would garner over in Wisconsin?

Isaac

[Andrew Kavchak]

Meanwhile, over at the other end of the country…
___________________________________________

Ask the candidates to help kids with autism

The Guardian(Charlottetown)

May 15, 2007.

Editor:

The parties in the upcoming P.E.I. election race should take notice of the growing number of autism cases in this province. Today, one in every 150 children is diagnosed with autism. This makes it more common a diagnosis in children than pediatric cancer, diabetes and AIDS combined.

The standards for dealing with autism spectrum disorder in this province are unacceptable. The three biggest problems faced by parents who have children with this disorder are:

1. long wait times for diagnosis;

2. the needless red tape involved with income testing families for services; and

3. the absence of a pediatric doctor on P.E.I. who specializes in autism or its related disorders.

International autism specialists universally agree that early intervention is the most important aspect to treating a child. Our child was diagnosed in the fall of 2004. He sat on a waiting list to have early intervention, and he did not get into this program until the following September – a full year. Our government, in its inaction, is fostering an environment that makes parents struggle more than is necessary and leads children down a path of life-long struggles.

The second major issue we parents of autistic children face is the province's income testing – a required step to determine level of governmental support for required services. This policy, which seems to be modeled after the American health- care model of pay-per-service, causes unjust strain on middle-class families and working poor.

We believe the system should offer the same services to these children whether parents are rich or poor, giving all children who suffer from autism spectrum disorder the same access to early intervention programs.

Thirdly, this province has no doctor who has up-to-date training in the field of autism. With diagnoses this high, this must change. Autism is a worldwide epidemic, and the health-care system of P.E.I. is doing nothing substantial, seemingly intimidated by the immediate cost of treatments and programs.

Autism is happening at an alarming rate. We challenge the parties to enact significant policy reform to help these youths. When the parties' candidates are knocking at your door, ask them about and challenge them to finally help the families of autism.

Jeff and Helena Reeves,
Charlottetown,
parents of a five-year-old autistic child,
members of the Autism Society of P.E.I.

[Isaac]

Hello everyone,

Here is some poignant political commentary I've come across recently, offered herein for your perusal.

— > http://tinyurl.com/2jhyot

Isaac

[Andrew Kavchak]

Senator Art Eggleton and autism treatment advocate Dr. Sam Yassine were interviewed for an autism report that is available online at:
http://www.voiceprintcanada.com/component/option,com_mtree/task,listcats/cat_id,75/Itemid,68/

___________________________________
Debates of the Senate (Hansard)
Thursday, May 10, 2007

Study on Funding for Treatment of Autism

Report of Social Affairs, Science and Technology Committee and Request for Government Response Adopted

On the Order:

Resuming debate on the motion of the Honourable Senator Eggleton, P.C., seconded by the Honourable Senator Watt:

That the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007, be adopted; and

That, pursuant to rule 131(2), the Senate request a complete and detailed response from the government, with the Ministers of National Revenue, of Intergovernmental Affairs, of Health and of Finance being identified as Ministers responsible for responding to the report. —(Honourable Senator Cowan)

Hon. Jim Munson: Honourable senators, I recognize that it is late in the day but I do want to speak to this motion and move it forward. I rise to speak about a subject that honourable senators know I care passionately about. The subject, of course, is autism. I endorse the remarks made by the Honourable Senator Eggleton, who provided details about the Twelfth Report of the Standing Senate Committee on Social Affairs, Science and Technology entitled, Pay Now Or Pay Later: Autism Families In Crisis. He shared some examples of the heart-wrenching testimony we heard during the committee's work, especially the testimony of parents who, day in and day out, deal with the demanding and difficult task of providing care, finding care and buying care for their children with autism. He also shared the very positive experience of hearing from adults with autism, who were able to tell us how autism has affected their lives and about the treatments they did or did not receive.

I am proud of this report and the attention it has drawn to this pressing issue that affects one in 160 families in this country. We learned a lot from individuals and families affected by autism but the inquiry also allowed us to learn something about ourselves and about our system of government, and that is what I will focus my remarks on today.

Autism is a complex condition that affects people differently and in varying degrees. It is a baffling condition that challenges us because it overlaps so many areas of responsibility and jurisdictions. We tend to think of autism as a health issue because it is considered a neurological disorder, yet the treatment for autism involves a whole range of professionals beyond the field of medicine. Teams of educators, therapists, social workers and counsellors must all come together to help individuals and families with autism.

Unfortunately, this is where we, in Canada, stumble and fail far too many people. Let us remember that our health care system was brought into being some two generations ago and was designed to fund care provided in doctors' offices and hospitals. At that time, autism was seldom seen, and when it was diagnosed, it was considered to be a psychiatric disorder.

Honourable senators, now we know that autism is not an illness that can just be treated in hospital or in doctors' offices. It cannot be cured with a prescription or a vaccination. No surgical treatment that we are aware of will help people with autism connect with the world. While there may not be complete consensus among professionals and families with autism about the best treatment options, one thing is clear: A multidisciplinary approach that includes the medical and educational systems and social services is what works best.

Unfortunately, getting those sectors to work together and funding those sectors to work together is not something that Canada does best. Autism demands a new approach; it needs a new box of policy tools to help individuals and families affected by autism. Right now, in Canada, we spend too much time explaining why we cannot help people; we offer the tired arguments of provincial and federal jurisdiction as an excuse.

From my perspective, the time has come to spend less time offering excuses and more time finding solutions. This means abandoning the jurisdictional shell game. Of course, funding for health and education is a provincial concern. That is a fact, but so what, honourable senators? That does not reduce the number of people with autism. That fact does not help families who are going broke paying for expensive treatment for their children.

One of the recommendations of the committee's report is that a federal-provincial-territorial meeting be held to develop a national strategy for autism. We also recommended that people with autism and their families be at the table.

It is essential that this meeting take place and it is vital for any national strategy to tackle the tough issues relate to treatment. As honourable senators know, treatment for autism in Canada depends on where one lives. In Alberta, there is funding to help families and many families are pulling up stakes from other parts of the country — the Maritimes and Ontario — and moving to Alberta to have access to treatment. It is another much sadder kind of Calgary Stampede.

However, a problem arises when they get there because Alberta, a victim of its own generosity, perhaps, does not have enough therapists to provide the necessary care. In Ontario, there are therapists but children languish on waiting lists because of lack of funding.

Honourable senators, my point with these examples is that the barriers that prevent us from helping individuals and families with autism are not insurmountable. In fact, they are administrative and bureaucratic in nature. It is about who pays and who does what. That is not difficult to figure out. It requires commitment, an open mind and a willingness to do things differently. We have the tools to address the problems but we have to use them in a different way.

This is the challenge we face. It is my hope that the government response to the committee's report will reflect a willingness to take a new approach and to do things differently. I mean this seriously. By calling itself "Canada's new government," this government must meet the challenge of doing things differently to help the one in 160 families affected by autism.

This is our greatest challenge. The other recommendations in our report are easier to address. Autism is difficult to diagnose and, for now, impossible to prevent since we do not know its cause. Our report was very clear. Research to understand the causes of autism must continue.

We must also ensure that the research already done on autism and its treatments is available to those who need it, particularly the parents of autistic children who are often overwhelmed by the volume and sometimes contradictory nature of the information available.

Research is essential, as is access to information. Everyone supports this initiative.

In closing, allow me to repeat: The priority that all honourable senators hear from the parents is to make treatment accessible to more children as soon as possible. As one father said to me, "My son does not need research; he needs treatment."

We have to find a way to move beyond the federal and provincial jurisdictional wrangling. We need to acknowledge at a national level that autism is a national issue that requires concerted action. If we can work with the provinces to reduce waiting times for knee and hip replacements and cataract surgery, then we can do the same for autism treatment.

It is time to acknowledge that the obstacles impeding our progress and preventing us from helping people with autism can be overcome with good ideas and a firm commitment to teamwork.

The Hon. the Speaker: Honourable senators, is it your pleasure to adopt the motion?

Hon. Senators: Agreed.

Motion agreed to.
______________________________________

[Michelle Weis]

This post of for Franca Pastro:

I deleted your contact info by mistake and wanted to get a hold of you regarding ABA in New Jersey. Email me back Franca or call me and i can give your friend more some updated information.

Michelle
716-773-2588
geminisky@adelphia.net

[Monika Lange]

I'm always looking for the best treatment for my child. Someone recently mentioned that there are therapies out there that work "just as good" as ABA and that data exists to support that. I would very much appreciate getting any data that exists on the latest and greatest, so would anyone having scientific data supporting the other therapies please post it? Thank you!

[Debra Antifaev]

Oh for crying out loud…..why is the last post so angry, Anne-Josee?
I am a mother too and I do know Cyndi. I admire what she has done with mothers on the move. I agree with her that severely autistic children should have the choice to go to a separate school I took exception to the statement in the news paper that implied ABA is somehow "bad" or "wrong". I am afraid that, in her capacity as an advisor at ACT BC, she could in fact mislead parents.
My statement was simple: If "the parent" had not used ABA on her children she should not disparrage it for other parents…that is all. Use what ever you want…that is my message…..just please stop telling parents who can potentially be helped….that ABA is bad.

I am confused as to why our children are different, though. I watched a friend of mine, with a beautiful daughter with diabetes, go through the pain treating her every day. Her daughter would cry, "No more needles! No more Needles!" It was absolutely heartbreaking, but no one ever suggested that she not be treated. Today she is 13 and gives herself her needles.

When the people of a different religion had 6 babies and did not want to give them blood-transfusions…..the government forced them!! If I was to deny my son effective treatment for cancer/diabetes/severe ear infection the Government would insist, but oddly enough the Government does not step in when it comes the treatment of special needs children….why?

There is no need to "Yell at me over email" Anne-Josee. I am a mother too. I love my child too. I saw an inaccuracy and a criticism of my treatment and I corrected it.

That is who I am……my name is on this post.

Deb

[Deleted User]

Thanks Nancy
and to the last message I answer;

"who are you?"
first of all you do enjoy putting people's names down hey? Hope it makes you feel better. but really who are you to make such allegations as to I don't know what ABA is? I've been around it for yrs and do know about. I never said that I don't support it. I simply said that there are other choices out there that are sometimes better depending on the child. And for lots of them it is ABA that's the best and some not… simply put. Do you wear the same clothes (color-fit-size) as all the other woman on the planet?
I very well know that ABA is great and it's got lost of proofs to it. OPEN MINDEDNESS it's called.
And again do you know Cindhy personally or what? She knows way more about ABA than you could imagine. If it's all from the newspaper; well as an adult you should know that the the media always protays things the way they want it….

Please don't make judgement about people + put their names in a public site like this. I hope you know how hurtful this can be…

To all other parents;
I just hope that this litte discussion will only make you understand about being adult and use what's called "ACCEPTANCE". Acceptance of:
-diffenrence that are between 2 different people's minds and choices
-that no one is ever absolutely right
-that this is life!
If you all have been able to accept that you have an autistic child; you can accept this difference that seems to be dividing parents in two groups around here but really; we're all here defending our kids.

this is only because of LOVE …

[Debra Antifaev]

I am sure Anne-Josee's post is in response to my letter regarding a very negative criticism of ABA (in the Vancouver Sun) by a parent who had never used ABA. I would just like to point out:
1. I do not believe that every parent MUST use Lovaas ABA. I am perfectly aware of how gruelling, time-consuming and expensive it is. I advocate every day for this very effective treatment to be covered for ALL PARENTS WHO WANT TO USE IT.
2. The effective results of ABA are not just my opinion, they are backed by peer-reviewed studies.
3. I was responding to another parent's criticism of a treatment she obviously knew nothing about.

All I ask is that if you know absolutely nothing about a topic…please do not criticize it PUBLICLY…you could steer other parents away from a treatment with the potential to truly help their child. Tell us what you are doing that is positive and effective in your childs life….not what is negative.

Please also remember (to quote my other children) "She started it"!! I was responding to a very hurtful, inaccurate, uninformed criticism of the treatment I had chosen for my son. I was simply defending myself.

Debra

[Author]

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