[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

[Nancy Walton]

Sorry, just want to add one more comment that has been on my mind lately.

I was a facilitator for ASBC meetings for 3 years and met many parents. I want to warn everyone that there are service providers out there who claim to provide consulting for ABA, but do not have very good training. When a parent is not happy with an ABA program, it is more likely the consultant that needs changing, not the type of treatment.

What is qualified?? That is unfortunately a fuzzy question, especially since we do not have a university training center here in Canada.

But I would venture to say you would be in good hands if you have someone who was a senior therapist at a Lovaas Replication site, or someone who has a Masters Degree or higher in ABA (or specializing in ABA) in autism. You will find that people with that kind of training here in BC are unable to take new clients!! That is because they are good. Parents are not unhappy with the treatment protocol and stay long term with such consultants.

Poorly qualified ABA consultants give ABA a bad name. This is very unfortunate.

It is too bad we do not have a proper training center here in BC. Good quality ABA is very effective. I speak from experiences given to me by many parents.

nancy Walton

[Nancy Walton]

Dear Anne-Josee,

I agree, we parents should not comment one what any other parent has chosen to do.

However, I would like to point out to you the inaccuracy in that newpaper article. I was seething with anger when I saw that statement. I can tell you that I have been at almost every meeting with the government as a feat representative and NEVER did we EVER say that the government should ONLY fund ABA therapy. We simply state that the government should fund ABA therapy because there is research that proves it's effectiveness. The government can fund any thing else it likes to.

Where did the newspaper get that idea? Not from feat members. They got that idea from non-ABAers. People who want to taint our message. Why would they want to taint our message??? Because their livelihood is at stake. It takes a lot of low-paid training to become a truly qualified ABA consultant. There are many people in the autism business who can not do ABA (although they will happily tell you they can do ABA if that's what you really want…ha ha). What would happen if all of you chose to do quality ABA in BC? These people would be out of work!!

As for the number of hours you do ABA, the research shows that you should do close to 40 hours to improve chances of recovery. A well trained consultant (and the parent) should certainly decide for themselves what works best for that individual child. This has nothing to do with what kind of therapy should be done.

As for what KIND of therapy is out there for autistic children, feat administration would welcome any information about research done on other therapies. If you have such research that shows effectiveness of another therapy, please share that journal article with us so we can analyze it. Feat is not about ABA….it is about science based treatment. ANY therapy that has science to back it will be supported by feat.

Nancy Walton

[Deleted User]

1st;I am writing in reguards to somebody pointing specificly at another parent with autism in the past couples of postings. I can't beleive a parent going through the same difficult times can judge somebody like this…
2nd People should realize that even ABA as good as it is; is not always the only answer. Other therapies can work just as good, and when I heard in the articles that some who fought for the funding beleived that only ABA should be funded. Well sorry to dissapoint but there are other therapies out there that have sometimes little modifications on their therapies and sometimes major …. and they have data to prove it as well. I was dissapointed to see that some people are very closed minded as to other situations that sometimes work better. As moms we can feel if something is right for our children or not and if it will work or not. Yes I did choose a different type of therapy for my son because I did not beleive he needed 40 hrs a week of therapy a week to get better. With only 16hrs per week for the last 2 yrs… he's improved like I can't even describe. So when I hear somebody who says only one path works it makes me sad. I think there should be a little more open mindedness aroud other behavior therapies. And please don't point at anybody like that without even knowing the person and why a choice was made. We all make choices that people don't agree with.

[Andrew Kavchak]

Debates of the Senate (Hansard)
1st Session, 39th Parliament,
Volume 143, Issue 91
Tuesday, May 1, 2007

Study on Funding for Treatment of Autism
Motion to Adopt Report of Social Affairs, Science and Technology Committee and Request for Government Response—Debate Adjourned

Hon. Art Eggleton, pursuant to notice of April 26, 2007, moved:

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.

He said: Honourable senators, I rise today to speak about the twelfth report from the Standing Senate Committee on Social Affairs, Science and Technology, entitled "Pay Now or Pay Later, Autism Families in Crisis."

I wish to start by thanking the members of the committee who demonstrated great compassion and care toward Canadians with difficulties. This is the first study report that the committee has released since I became its chair, succeeding Senator Kirby, and I was impressed with the contributions of all members. This is once again a unanimous report, which puts forth sensible and attainable solutions to a serious problem.

As well, I wish to highlight the contribution of Senator Munson. On May 11, he began an inquiry, which turned into the order of reference that launched the study. Families across Canada owe him a debt of gratitude as he brought an important issue to the floor of the Senate.

Like most senators, I know the issues of autism from what I have seen in the media. Many stories have appeared regarding court cases, perhaps some of them highlighting protests by parents or announcements by governments — which do not seem to satisfy anyone. However, I did not really understand the depth of the issue.

Those stories do not fully portray the frustration and fear that parents of autistic children have. After hearing from researchers, interest groups, parents and autistic individuals, I can say that I better understand. Hearing the stories pulled at my heartstrings, but they showed the reality of the situation and proved that it needs our immediate attention.

We heard from parents and what they see in their children in crisis, with very little help forthcoming. The reaction of each of us when something threatens our children is to protect them.

Laurel Gibbons, a mother with a nine-year-old autistic son, testified that instead of using her son's health care card to access treatment, she relied on two other cards: her library card to research autism, and her Visa card to pay for treatment.

She added:

We were going to have to pay for any interventions, including ABA, as well as the recommended speech and occupational therapy that ran into thousands of dollars.

After re-financing our mortgage three times in the last four years, the money has run out. The speech therapy has stopped, as did the occupational therapy for his sensory issues. . . . We are still doing what we can piecemeal. I worry every day that I may have to relinquish my custody of him and hand him over to social services because he becomes unmanageable.

Honourable senators, after hearing that, how can we not act? How can governments not support these parents and how can we not expect parents to be frustrated or angry?

Treatment, honourable senators, can cost $60,000 a year, the committee was told time and time again. There is varied support from the provincial and territorial governments. Certainly, it is not equitable across the country. The majority of that $60,000 is coming from the pockets of parents.

The committee was pleased to hear from a number of adult witnesses who have autism. Their testimony was inspirational and touching, and it showed what the results of detection and treatment can mean. Their testimony leads to some of the recommendations contained in the report.

Mr. Kristian Hooker, from Selkirk, Manitoba, spoke to the issues that persons with autistic spectrum disorder face. He said:

A big problem with people facing ASD in society is that others often have a stereotype of how a person with ASD is supposed to look or behave. Many people with ASD could eliminate that stereotype but rarely get that opportunity, especially with a large group of people.

That is why one of our recommendations is for the inclusion of autistic individuals in both national public awareness campaign and the proposed symposium announced by the Minister of Health last year. It is essential that this group be represented at any table that discusses what to do to help people with autism.

Mr. Jason Oldford is 36 years old and was diagnosed in 1974. He supported the views expressed by Ms. Laurel Gibbons in her testimony when he said:

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. . . . Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in.

The testimony of people like Jason Oldford and Laurel Gibbons is the reason that the committee recommended that the federal government convene a federal-provincial-territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy and that the federal government establish an appropriate level of funding — its appropriate share — in all of this. Parents are facing extraordinary costs to help their children, and what they need and ask for is help. They are asking their federal, provincial and territorial governments to help to alleviate this stress. The proposed meeting is not just needed, it must happen and must happen now.

Honourable senators, beyond these two significant recommendations of inclusion and a federal-provincial-territorial meeting, the committee further recommends: the creation of a public awareness campaign to enhance knowledge and understanding of ASD and the difficulties, the challenges and some of the great qualities and abilities that many ASD people exhibit; the creation of an autism knowledge and exchange centre and an internet-based web portal for reliable data for those seeking information on autism. The committee heard from many witnesses that there is too much confusing information.

The committee also recommends the creation of an autism research network and the provision of money for research through the Canadian Institutes of Health Research, because there remains much to learn about ASD disorders. The committee recommends that the federal government work with the provinces and territories to address the human resources issues, including training standards. The Province of Alberta provides funding, but they do not have the human resources; Ontario does not provide as much funding but has lots of human resources. There are problems right across the country of that sort, including training standards, which are so varied. As well, we ask that the Department of Finance study the implications of income splitting and other tax measures to help the families.

Pulling it altogether, the committee recommends that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy, which is needed now.

The committee also noted that in Budget 2007 the government has taken steps toward helping parents — and I congratulate those who sit on the government side in this place on announcing the creation of a registered disability savings plan. However, this plan will help only some people tomorrow, not today, and today is the issue. Parents are going broke now and there is no money for tomorrow.

In the words of Jason Oldford — and I quote:

. . . if you pay for it now, look at the return you get on your investment. The people with autism will get out into the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Pay now, or pay later. Honourable senators, that is why we need to act today.

In conclusion, I thought I would use the words of my esteemed colleague and deputy chair of the Social Affairs Committee, Senator Keon: At committee, when asking one of his questions of witnesses, he said.

Our job is to come up with a plan that is good enough that government cannot say no to it.

Senator Keon said that, in his experience, plans are turned down if they are not good enough but that if they are good enough, they are never turned down.

The report of the committee contains good recommendations that will help families across the country to deal with this growing problem. I know we could have gone further, and many people wanted us to, but we had to make recommendations that could be and should be implemented — ones that are reasonable. These recommendations help to move us in the right direction on this issue, to show parents and autistic adults that they are not alone and that they have not been abandoned.

Honourable senators, I look forward to hearing from the government in respect of this motion on the twelfth report of the Social Affairs Committee and, more important, I look forward to the implementation of this report.

Hon. Gerry St. Germain: Would the honourable senator take a question?

Senator Eggleton: Yes.

Senator St. Germain: Autism has emerged in my life. As well, I have been approached by people in British Columbia on the issue. Does the honourable senator know, through his studies with the able assistance of Senator Keon, why has this illness has been neglected in the process of treatment? Why has autism not been recognized by provincial health authorities?

Is there an increase in the number of births of children with autism? Are there any scientific projects under way to determine whether diagnoses of this illness are on the increase?

I speak with sincerity, honourable senators, because I have a niece who has two autistic children. I have seen a beautiful young woman virtually deteriorate before the family's eyes.

The information given to me by some who are active in British Columbia on this issue has clearly stated that there appears to be an increase in the number of births of autistic children. Could the honourable senator clarify that point? Did the committee's study reveal why the issue has not been addressed by provincial health authorities and Health Canada?

Senator Eggleton: I thank the honourable senator for the excellent questions. It is not clear whether there has been an increase in the number of births of children with autism. However, it is clear that there is an increase in awareness of autism, with earlier diagnosis and earlier treatment for some, but not for everyone because not everyone can afford it or access it readily. Certainly, there is an increase in awareness but an increase in the numbers is not clear from the studies to date.

With respect to health, one of the difficulties with autism spectrum disorder is that it covers more than one field. It is not only a question of health. They go to doctors and clinics, but many things would come under the social service umbrella or even the education umbrella. Also, many costs relate to the fact that many of these young people require one parent to stay at home. It is extremely difficult for both parents to work.

The Hon. the Speaker: Honourable senators, it being six o'clock, I am obliged to leave the chair unless there is consent not to see the clock.

Hon. Gerald J. Comeau (Deputy Leader of the Government): I propose that we give the senator a few moments to conclude.

Hon. Senators: Agreed.

Senator Eggleton: This is why we think we need a national autism strategy. We need to pull together the governments at different levels to work out how we can cross the lines of health care, education and social support services, and what to do about the loss of income for parents. All these things create enormous financial and emotional pressures for these people.

This is why we have suggested that we need a strategy. We need the symposium that Minister Clement recommended, which would include people in the autism field. We also need the federal and provincial governments to come together to work on this national strategy.

On motion of Senator Cowan, for Senator Munson, debate adjourned.

[Isaac]

Debra, thank you for sharing your letter to the Vancouver Sun with our group; its message is right on target!

It always makes me laugh when I hear critics of Lovaas-type autism treatment (Intensive Behavioural Intervention … IBI) say, "well, Lovaas treatment doesn't work for EVERYONE — and it doesn't cure — so it shouldn't be funded by government." The key point often missed in the rancorous public policy debate on this issue is that no physicians, or even government health policy hacks (to the best of my knowledge), have EVER said that an effective, science-based drug or surgical intervention that may not "work for everyone" (or cure) should nevertheless not be covered under Medicare for ANYONE, or utilized to ameliorate a disorder to some extent.

For Medicare coverage of cancer treatments, there is no impossible standard set for unanimous agreement amongst all so-called "stakeholders" regarding what treatments to use or fund. There is no excuse of a schism in the cancer community used to exclude public funding for treatment. These flawed arguments seem reserved only for our children.

Sounds like a policy double standard against children afflicted with autism, you say? Of course it is, and it's raw, naked discrimination against an identifiable group of Canadians, with only the translucent fig leaf of justification being that the disorder happens to have no physical manifestation and is not treated in a hospital or in a physician's office.

The "it-doesn't-work-for-everyone" argument is precisely the type of absurd logic that permeates the autism treatment debate in Canada, and it's consistently applied by opponents of court-affirmed, medically necessary treatment (core health need) of children afflicted with autism.

In my view, until all of Canada's governments rid themselves of the deeply rooted, social services mindset regarding autism, progress on getting health insurance coverage for this devastating neurological affliction will remain an uphill battle. Moreover — and this is a crucial point — until the legions of truly nasty health policy academics in Canada (think B.C. Office of Health Technology, Canadian Institutes of Health Research, Health Canada Policy Branch, Donna Greschner-Steven Lewis in Auton at S.C.C.) are forced to formally recant biased autism treatment "research" and end their systematic obstructionism regarding public funding for autism treatment, little if any progress is likely on the Medicare for autism front anytime soon.

Isaac

[Debra Antifaev]

I, too, am enjoying the Vancouver Sun's series on Autism. I have written many times to the Sun and never had my letters printed. I have tried to keep the letters factual, non-insulting, etc, but I have always assumed the Sun did not have any interest…so I am very pleased with this series. I am attached a recent letter with regard to the current series…I hope they will print it….
Deb

Editor,
Parent, Cyndi Gerlach tried Lovaas ABA but "stopped after a couple of days. She felt it was too gruelling a protocol." While I would never deny anyone their choice in medical treatments, if we had all employed this ideology I would have never have learned to ski, my husband would not be training for a half marathon, and my other children would not ride horses, play hockey or read! In addition, my severely autistic son would have never been potty trained, learned to ride, swim or communicate with his family. It is gruelling and expensive and heartbreaking and hard on the rest of the family (my husband and I have five children) but for some of us, quitting is not an option. How can someone publicly criticize something they tried "for a couple of days"? If you don't want to use ABA, that is your prerogative but to deny it's effectiveness without actually trying it, that is just irresponsible.
The message of FEAT is simple and it is an ideology employed in the treatment of almost EVERY other medical condition. Give us what science says is the most effective treatment TO DATE and continue to study Autism until a better treatment or, better still, a CURE can be found.
I lost a good friend to leukemia in 1989. She died while receiving the same cancer treatment that had saved many others. While she was being treated with the best science, to date, researched continued on more effective treatments for cancer. It was all covered by medical.
No one said "there is no cure for cancer, so we are not going to treat you". No one said the treatment is too gruelling and painful so we are not even going to try. No one asked if my friend was "worth" saving. She was given the option of the treatments that had been proven effective thus far. If she had chosen a different, unproven treatment, it would not have been covered by medical. Simple.
There is not always a logical explanation as to why some medical interventions work for some people and not others, but it does not mean that we stop trying. It means we use what the studies say are effective today and we keep searching for a cure.

Debra Antifaev

[Andrew Kavchak]

Debates of the Senate (Hansard)
Thursday, April 26, 2007

Study on Funding for Treatment of Autism

Notice of Motion for Adoption of Report of Human Rights Committee and Request for Government Response

Hon. Art Eggleton: Honourable senators, I give notice that at the next sitting of the Senate I shall move:

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, Intergovernmental Affairs, Health and Finance being identified as ministers responsible for responding to the report.

[David Chan]

Hey all,

Long time, things are going well Mr. P is now in Grade 9. I can hardly believe it. The other night he brought home some science homework. Chemistry, yuck ! How am I going to teach this kid Chemistry, when I suck at it.

Well, we will be ABA'ing the problem, we will break down the task in small steps and teach it one step at a time, I have a feeling it's going to work, actually, I have more than a feeling.

This is the same way we taught him how to tie his shoes, ride his bike, read……so why not chemistry.

Then another thought occurred to me, what a pain the a–, this is going to be hard…..(thank god for his mother who is a whiz at this particular branch of the sciences)….but wait, look at this kid

You all remember who he was,this has not been a easy journey for any of us, and yet, here we are.

His mom and I reflected for a moment, and realized how really blessed we really are, and what ABA therapy, and hard work has brought. I wish every single one of you on the board this kind of pain in the A–

Keep going, fight the good fight

Mr. P's Mom and Dad

P.S. Mr. P was in toys r'us and he asked his mom,"hey, where the he– is my dad ?" don't all grade 9 boys sound like that ?

Before I forget I made another slide show for FEAT, and I have posted it on Youtube, and here is the link

http://www.youtube.com/watch?v=Bm5pugGFDVY

Check it out

D

[Super Dad]

I believe Pete McMartin has just set the gold standard for journalism.

Tony

[Andrew Kavchak]

Congratulations to Bev, Jean and Sab!
______________________________________
We've taught Allison to speak, to tie her shoes; This is the fifth instalment of a special series on autism. Today: the high cost of therapy, and a mother's determination
The Vancouver Sun

Apr 26, 2007
Page: A8
By: Pete McMartin
Bev Sharpe has a big anniversary coming up next month: It was 10 years ago in May 1997, that her daughter, Allison, was diagnosed with severe autism. Allison was two. Back then, the services available to parents of children with autism were more limited than they are now, and government subsidies for therapy were non-existent.
Nonetheless, after a couple of months of research, Bev decided Allison needed an expensive and intensive therapy known as Lovaas ABA. It called for up to 40 hours a week of in-home intervention with a team of therapists.
It was also horrifically expensive. Lovaas, at present, can cost anywhere between $40,000 and $60,000 a year.
Despite the cost, Bev believed Lovaas was the only therapy that could give Allison a chance at a life in the real world, and Bev was adamant she have it. It was the only treatment backed up by data that proved its effectiveness.
Since there were few Lovaas practitioners in B.C. at the time, Bev placed ads all around the Lower Mainland, hired a team of 10 applicants and paid to have them trained by a consultant Bev brought in. The three-day training session cost $5,000.
Allison started her Lovaas therapy three months after her diagnosis, on July 21, 1997.
Ten days later, on Aug. 1, Bev and her husband split.
The couple's divorce was finalized two years later.
They divided their assets, and Bev bought her husband out of his share of the house. It was a modest but comfy place on Marine Drive in West Vancouver, and it was perched on a rock ledge that afforded a knockout view of English Bay. It was there that she, Allison, and her son, Jackson, who was a healthy, normal child three years older than Allison, would face an uncertain future together.
Certainly, the recent past had been difficult enough. Allison's autism was profound. She was completely non-verbal. As a toddler, she never crawled, or exhibited any curiosity about things around her. She made no eye contact or acknowledged the presence of other people. Allison engaged in self-stimulatory behaviour, too, like flapping her hands or snapping her fingers. She resisted toilet training, and engaged in feces-smearing. She refused to sleep through the night.
Those first few years of therapy for Allison were a financial shock. The provincial government only began to fund autism therapy with any significance in 2002, but in 1997 and 1998, there was no funding, and in the first two years of Allison's treatment, Bev spent on average $25,000 each year, not counting the expense of a full-time nanny. Even at that, it wasn't enough to fund all the therapy Bev felt Allison needed.
"I couldn't afford to do the 40-hour-a-week [Lovaas] program," Bev said. "I was strapped."
She had child support of $1,000 a month from her ex, but it wasn't enough. So she worked all the overtime she could get at her job as a meat inspector. ("I believe I'm the only vegetarian meat inspector in B.C.," Bev said.) She cashed out her vacation time. She remortgaged the house, twice. She went deep into a line of credit.
It still wasn't enough.
She could have sold the house, but her team of doctors at Childrens' Hospital said Allison's domestic situation should not be changed.
She decided to take in boarders.
To do that, the house needed renovating, and Bev set about doing much of it herself. She bought or borrowed tools from her neighbours. She would come home after work and strip paint or put up Gyproc. The renovation took her two years.
She eventually took in three boarders. To do that, Bev had to give up her bedroom.
She now sleeps on a small foamy on her living room floor.
Allison's therapy, though, proceeded. In addition to going to school, Allison did (and still does) in-home therapy of 30 hours a week with a therapy team who come into the home every day. For four days of the week, she has three-hour sessions; for the other three days, she has six-hour sessions.
Lovaas therapy is rigorous, and relentless. It breaks down simple tasks into even simpler components which, to a normal child, is the stuff of their natural development — things like identifying colours and everyday objects, interacting with others, vocalization, simple math. But the subject, ideally, improves slowly and steadily by repetition and positive reinforcement.
This, Allison did.
"It's been 10 years of therapy," Bev said, "and we've taught Allison how to speak, how to tie her own shoes. She can use the toilet by herself, eat appropriately at a table with her family, dress herself, do laundry — the daily living skills."
It's also given her a chance at a future.
"The child's not in an institution," Bev said. "She has a life here.
"And the goal, ultimately, is to give her enough skills so she can one day operate in the real world."
She can, for example, take Allison out in public now, for a short time. Her record — Bev timed it — is 17 minutes at a local Starbucks. Recently, they went on their first vacation together, to Disneyland. It took five months to prepare Allison for the trip, of showing her pictures of the plane, of explaining step by step what they would do once they got on it. The trip went without a hitch.
For Bev, Allison's progress validated her decision to go with Lovaas. She became a committed advocate of it. She joined FEAT of B.C. — Families for Early Autism Treatment — and hers was one of 23 families which took the provincial government to court in the late 1990s. FEAT wanted autism recognized as a medical condition that deserved fully-funded treatment, and that treatment, FEAT maintained, should be one backed by science — in other words, Lovaas.
Lovaas was devised by Ivar Lovaas, a psychologist out of UCLA who revolutionized treatment in the late 1960s when he used the techniques of B. F. Skinner's applied behavioural analysis research on children with autism. In a study published in 1987, Lovaas found that almost half of his 19 test subjects showed improvement to the point they were indistinguishable from neurotypical children, while the majority of the other half showed some progress.
FEAT's litigation, which went all the way to the Supreme Court of Canada, will be dealt with elsewhere in this series, but in short, it essentially embarrassed the government into beginning its present system of parent-directed discretionary funding for therapy in 2002. While FEAT won a subsidy of $20,000 annually for children under six, and $6,000 annually for children between six and 18, those monies are nowhere near enough to fund Lovaas in its entirety.
But since Lovaas's paper in 1987, a kaleidoscope of therapies have been developed, some of which use applied behavioural analysis techniques.
There are now many parents in B.C. who have adopted these therapies, and who feel Lovaas is not right for their children. They dislike the idea that FEAT insists the government should fund only Lovaas, and they especially dislike the implication — encouraged by FEAT, some say — that they are doing wrong by their children by not using Lovaas.
It has led to a split in the autism community of incredible rancour. Depending how one cares to look at it, it has caught the government in the middle of a crossfire, or allowed it to play one side of parents off against the other.
For Bev, however, the proof is looking her in the face. Literally. Allison makes eye contact now. Allison has a life. Bev spent $26,000 last year on her treatment and felt every penny was well spent.
After all, she said, it was 10 long years ago that, after only after six weeks of intensive Lovaas therapy, her daughter said her first word.
It was "Mama."
pmcmartin@png.canwest.com or 604-605-2905
Colour Photo: Glenn Baglo, Vancouver Sun / Allison
Marshall's autism was profound. As a toddler, she was completely
non-verbal. She didn't crawl or exhibit any curiosity about things
around her, and she would not make eye contact or acknowledge the
presence of other people. After 10 years of Lovaas therapy, she can
go out in public, including taking a recent trip to Disneyland.
;
Colour Photo: Glenn Baglo, Vancouver Sun / A 'high-five' for a
successfully completed task.
;
Colour Photo: Glenn Baglo, Vancouver Sun / Therapist Darlene
McIntosh works with Allison to help her count money.
_________________________________________________
Mothers lead the fight against bureaucracy, courts; Dynamic duo Freeman, Lewis force government to fund treatment
The Vancouver Sun

Apr 26, 2007.
Page: A9
By: Pete McMartin
Despite what some people think of them — and there are those who would prefer not to — two of the most tenacious and heroic women in B.C. are Sabrina Freeman and Jean Lewis.
For what they did, they deserve, at the very least, the thanks of every family in the province who has a child with autism. The Order of Canada wouldn't hurt, either.
Both are mothers of children with autism.
In 1996, Freeman founded Families for Early Autism Treatment of B.C. — Canada's first autism treatment advocacy group. Lewis joined soon after.
"We exist for one reason," Lewis said, "that science-based treatment for autism be included in universal health care."
Freeman is a Stanford-trained sociologist and lives in Langley. Lewis lives in West Vancouver. Her husband, Michael, is president of the Autism Society of B.C.
More than anyone in this province, Freeman and Lewis are responsible for forcing the provincial government to fund — to the limited extent they do now — autism treatment.
As Lewis put it:
"If it wasn't for FEAT, nobody would be getting any treatment money today. If it wasn't for what our organization did, no child in B.C. — and further to that, no child probably in this country — would be accessing treatment money."
What FEAT-B.C. did was fight.
In 1998, it took the provincial government to court to have autism recognized as a medical condition that deserved full health care funding.
At the time, there was virtually no government funding of autism treatment. Families all over B.C. and Canada were having to bear the catastrophic expense of paying for their children's therapies.
The therapy that FEAT championed — Lovaas ABA, an intensive early intervention program that requires 40 hours a week of one-on-one therapy, and which FEAT insists is the only effective autism therapy backed by scientific study — cost upwards of $60,000 a year.
So in 1998, Freeman and Lewis organized a group of 30 families who took the then NDP government to B.C. Supreme Court to force the government to fund Lovaas therapy in its entirety.
FEAT won.
There was a change of government: The Liberal government of the day appealed, and the case went to the B.C. Court of Appeal in 2002.
FEAT won again.
In 2003, FEAT won a third time against the government in B.C. Supreme Court in a case similar to the first.
The Liberal government, however, which had still not followed the lower courts' orders, took the case to the Supreme Court of Canada.
In November 2004, in what was considered one of the most significant social-policy cases to reach the Supreme Court, the court devastated parents of children with autism across the country when it ruled for the province, and refused to elevate health care funding to a constitutional right.
This pleased the 10 provincial governments and the federal government, all of which intervened to warn judges that governments would have to fund unlimited budgets if health care were to become all things to all people.
Thus, the court ruling meant that parents of children who were autistic were still on their own, and the province could choose to fund or not fund autism therapy at whatever level it wished.
Still, FEAT had won a victory of sorts — the moral one.
Its six-year-long battle with the provincial government essentially embarrassed Victoria into creating a province-wide network of diagnosis and services.
It also ponied up money for therapies — $20,000 a year for children under six, and $6,000 a year for children between six and 19.
And — a critical point, this — it made those monies discretionary: it was left up to each family to choose whichever therapy they felt was best for their child.
This angered Lewis on two counts.
One, the money was nowhere near enough to fund Lovaas, or, for that matter, most other therapies.
Two, the discretionary nature of the funding, and the provincial government's refusal to endorse Lovaas as best practice, placed all other therapies on the same footing with Lovaas.
To Lewis and Freeman, it was unthinkable. Asked if she thought families who did not adopt Lovaas should be denied funding, Lewis said:
"I think so. If they are not doing best practices, ya.
"You now, if you have cancer . . . and the doctor gives you a treatment protocol to follow, you may not like it . . . and you can choose not to do it, and you can choose to take shark's fin cartilage or papaya seeds or any number of things. But the government's not going to pay for shark's fin. They're going to pay for what's best, what they know, what science says."
And Lovaas, FEAT maintains, is the therapy that has the most studies and controlled data proving its efficacy.
"There's about 32 therapies for autism," Freeman said, "95 per cent of which have no data behind them."
In describing other therapies, Freeman used the term "quackery" more than once.
"There's lots of people who do all kinds of stuff, and government actually here pays for all kinds of garbage because they're not accountable. Government doesn't care if something works. They just give money to people to go away."
Of course, many families of children with autism don't feel the same as Lewis and Freeman, and have adopted other therapies for their children.
To no one's benefit, except perhaps the government's, the result has been a rancorous split in the autism community among service providers, therapists and academics, and the families of children with autism themselves.
More on this and therapies tomorrow.
pmcmartin@png.canwest.com or 604-605-2905
– – –
See http://www.VancouverSun.com for more from the six-part series
SATURDAY: The story of a severe case, and life at home with an autistic child.
MONDAY: Two mothers, their tears, and the sacrifices they must make living with autism.
TUESDAY: How the health care system discriminates against those on low income.
WEDNESDAY: Immigrants and the special challenges they face in dealing with autism.
TODAY: The high cost of therapy, and a mother's determination.
FRIDAY: Two autistic teens and their families face an uncertain future.
Colour Photo: Glenn Baglo, Vancouver Sun / Jean Lewis, of
Families For Early Autism Treatment, says government money is
nowhere near enough to fund therapy.

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