[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

[Debra Antifaev]

Unfortunately Roxy is quite right. Part of the collective agreement that governs BCTF and CUPE members states that they are not allowed to criticize or "snitch" (if you will) on other members. This can be a large problem if parents have an issue with a teacher or SEA and is the very reason many parents of special needs children choose the additional expense of private school.
I had a friend (teacher) who wanted me to phone her complaint in to the radio one day. When I asked her why she didn't call herself she said, "I am afraid someone will recognise my voice and I will get into trouble". Can you imagine teachers afraid to speak out because of Union persecution?
How will they stand up for our children?
It is a good idea NOT to vote for candidates with any BCTF and/or CUPE ties because, although they may be quite wonderful people, they do a very poor job of policing themselves.

[Brad & Roxanne Black]

November 15th is election day, let's make sure we get out and vote for the school trustee's that are putting children's rights before unions!

***********Surrey School District #36********

FEAT parents have been out to the all candidates school trustee meetings and we have found the existing board of trustee's to be putting the needs of children first. I would like to personally endorce candidates from The Surrey Education Team;

Dantzer, Alex
Glass, Pam
Jefferson, Wayne
Masi, Reni
Wilson, Shawn

Hillsdon, Paul – Independant

We asked Laurie Larson – trustee candidate from the SCC Team (Surrey Civic Coalition) who's right trump who's, the children or the union worker. Her exact words were, unfortunatley the rights of the CUPE worker and could nothing to change that, this was printed in The Surrey leader!

Let's vote for candidates who have the best interest of our children first!

[Norm Tailless]

Has anyone identified a list of "good" school board trustees in each municipality that we should vote for?

[Andrew Kavchak]

Hi Folks,

There was an interesting exchange in the Nova Scotia legislature yesterday along with an article in the Halifax paper (see both below). Congratulations to Jim Young of FEAT of NS for his effort in getting Nova Scotia out of the stone ages when it comes to autism treatment. Canada needs more Jim Youngs! There is also an interesting report that several autism associations from around the world, including the UK, have sent Obama their congratulations and expressed their gratitude for raising autism issues during his campaign. I just wonder whether any Canadian autism society or similar organization did so, or plans to do so as well?
___________________________
Nova Scotia Legislature
Hansard
Tuesday, November 4, 2008

MR. DAVID WILSON (Sackville-Cobequid): Thank you, Mr. Speaker. I bring the attention of the members to the west gallery. We have Dawn Morrison who joins us today. She's been a strong advocate for the autism movement here in Nova Scotia, so if we could give her a warm welcome. (Applause)

MR. SPEAKER: Certainly welcome to all those guests and all the other people who are visiting us in the gallery today.
We'll commence now with the daily routine.

HEALTH: AUTISM PROG. – STATUS

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, my question is for the Minister of Health this afternoon. Nova Scotia is seriously lacking in services for children with autism. The government's solution was the early intensive behavioural intervention and treatment program or the EIBI. I would like to table a press release from 2004 that states, "Details of the treatment roll-out plan are still in development, but it is expected that it will take about three years before the program will be fully operational within the nine district health authorities and the IWK." So my question today is for the Minister of Health. Can he explain why this program is still not fully functional and operational, leaving Nova Scotian children without services they need?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, I will be bringing in the report, as the member opposite knows. After a three-year period the department wishes to do a review of the EIBI Program and at that point make a decision on the future of the program, whether it worked or not, find out what the deficiencies are and try to put a cost to what a full program would look like. I will be tabling that report in the House – maybe later today, if not tomorrow – to bring to the House's attention the successes of the EIBI Program.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI Program is helping 27 children per year in Nova Scotia. According to the Autism Society of Nova Scotia, there are approximately 1,790 children here in our province with autism and pervasive developmental disorders. That's a large number of children here in our province. So I would like to ask the minister, can he explain why after four years and over $12 million, you are only helping 27 of these 1,790 children here in Nova Scotia?

MR. D'ENTREMONT: Mr. Speaker, over the last number of years it has been a learning process, not only for the department but for the individuals who offer the service, as well as the families that are receiving that service. We will have a report that will talk about the importance of the program, the effectiveness of the program and recommendations on the future of the program. Right now, there are 117 children who have gone through the program when it does complete in the Spring and we would like to see more children go through that program, as it has been very effective.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI program has done a lot of good for the 27 children each year who are able to access it, but what about the 1,763 other children that they are refusing to help today in this province? I would like to ask the minister, when are you going to help these 1,763 children by expanding the program across this province?

MR. D'ENTREMONT: Mr. Speaker, the member opposite knows full well that, of course, there are costs related to this program as well as human resources related to this program. Finding the individuals that can offer the program in the different districts, not only here at the IWK but in the other nine districts across this province, is very difficult. It would cost a fair sum to implement that program across this province and it's one that needs to be considered during a full budget process, it is one that the department will continue to work with and work on in order to make sure that we help as many children as is feasible, and can be done with the resources that are available to Nova Scotians.

MR. SPEAKER: The honourable member for Kings West.

HEALTH: AUTISM FUNDING – COMMITMENT

MR. LEO GLAVINE: Mr. Speaker, my question is for the Minister of Health. Last July the minister claimed that autism funding had grown in leaps and bounds; one month later, the minister said that more funding was needed. The fact of the matter is that no funding is available to help families of autistic children, unless the child's name is drawn out of a hat for funding. My question to the minister is, will the minister clarify his commitment to funding and help all children with autism?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, as my answers to the previous question revolved around, we in the Department of Health, as well as we as a government, would like to help all the children who have autism. We speak to families just as much as the member opposite about the challenges that they have with the children and trying to find services for those children.

Again, this is a new program. I know over the last three years we have spent well over $12 million to help the 117 children that have been through the program. It would cost us, again, a fair sum in order to expand that to the full gamut of the province – again, we are receiving it in all parts of the province as well as here in metro. We would have to find resources – not only monetary, but the individuals who have to work so hard, one-on-one, with the families in order for this program to succeed.

MR. GLAVINE: Mr. Speaker, the father of an autistic child, Jim Young, recently wrote in The ChronicleHerald: Our family received no financial support for treatment – never have. Yet in the last four budgets, the government underspent in mental health programs by a total of more than $1.5 million. My question to the minister is, why isn't the government committing this money to help families like Jim Young and their children coping with autism?

MR. D'ENTREMONT: Mr. Speaker, as the member opposite fully knows, as we put a budget forward, as we try to start up new programs, from time to time some of these programs become underspent because of just not being able to find the people available to offer the services and such. Every year we try to find a way to infuse money into new programs and the EIBI program is not the only new program that people are asking for, whether it be an expansion to the diabetes program, whether it be a Pharmacare Program, whether it be another thing, so there are competing priorities here. This report that I will be tabling either today or tomorrow will show the successes, the recommendations on how to bring this program forward, and to see more children receive this service.

MR. GLAVINE: Mr. Speaker, in Monday's ChronicleHerald, the editorial board stated the difference in outcomes for autistic children, unless parents pay for the expensive treatments privately, can be tragic.

Mr. Speaker, in August the Deputy Minister had it right, calling on government to commit more funding to mental health services. She doesn't want a repeat of Nova Scotians spending 30 to 40 years in provincial care. My question to the minister, with his own deputy pushing for more funding for better mental health services, what is the minister going to do to address the gaps in autism program funding?

MR. D'ENTREMONT: Thank you very much, Mr. Speaker. I hope the member opposite is not saying that the other programs under mental health are not important. The deputy minister did have it right, because we do need to spend more money on mental health but, with the other competing priorities – and the member has these people who visit his office as well, whether it be advocates for diabetes, whether it be advocates for cancer care, whether it be advocates for whatever it is, they're all asking for millions and millions of dollars to support programs for the patients who they represent.
Mr. Speaker, again we will have a report that I believe is a good report, that shows the success of the EIBI Program and one that will have recommendations on how to enrich this program well into the future.
________________________________________
RESOLUTION NO. 4623
MR. LEO GLAVINE: Mr. Speaker, I hereby give notice that on a future day I shall move the adoption of the following resolution:

Whereas Kym Hume has been an educator for 31 years, presently serving as the Annapolis Valley Regional School Board's Autism Consultant; and

Whereas since 1993 Ms. Hume has studied all aspects of autism spectrum disorders and has educated parents, teachers, students and schools across the province, bringing the STAR program to Nova Scotia; and

Whereas Ms. Hume is the driving force behind the opening of the Autism Centre at Kingston School, which hosts all the autism programs for the Annapolis Valley;

Therefore be it resolved that members of this House congratulate Kym Hume for receiving the 2008 Sobeys Green Jacket Award from the Provincial Autism Centre, in recognition of everything she has done to promote autism awareness and education.

Mr. Speaker, I request waiver of notice.

MR. SPEAKER: There has been a request for waiver.
Is it agreed?
It is agreed.

Would all those in favour of the motion please say Aye. Contrary minded, Nay.

The motion is carried.
__________________________________
RESOLUTION NO. 4654
By: Mr. Leo Glavine (Kings West)
I hereby give notice that on a future day I shall move the adoption of the following resolution:

Whereas the Provincial Autism Centre was founded in 2002; and

Whereas this non-profit, community-based organization works towards a world in which those who have autism spectrum disorders are able to live their lives fully; and

Whereas the Provincial Autism Centre provides support and services to those who are affected by autism spectrum disorders, through education and programs;

Therefore be it resolved that members of this House recognize the significant contribution the Provincial Autism Centre has made and wish them continued success.
____________________________________
From the Chronicle Herald (ChronicleHerald.ca)

Province urged to expand autism treatment program

By DAVID JACKSON Provincial Reporter
Wed. Nov 5, 2008.

Parents of autistic children and opposition critics are renewing their demands for the province to expand an autism treatment program in light of a report saying how well it works.
Dawn Morrison, whose seven-year-old son Max received a year of treatment through the early intensive behavioural intervention program, said Tuesday that it had a huge impact on him, helping him to speak and be understood and giving him the ability to make friends.
"How can they make their way in the world without that?" Ms. Morrison said at Province House.

She said it’s frustrating to think other children who would benefit from the treatment aren’t getting it because the province doesn’t fund it for everyone.

She implored the government to cover the treatment for all eligible children, as New Brunswick does.

Health Minister Chris d’Entremont said two challenges in expanding the program are finding the extra $3 million a year to do it, plus the people to deliver the specialized one-on-one treatment.

He said the province had been waiting for a report on its treatment program.

The program, which started in 2005 and costs $4 million a year, has been a big help for the children who participated, said a report released last week.

Isabel Smith, a researcher based at the IWK Health Centre in Halifax, evaluated 27 children who completed a year of treatment and found all of them had significantly improved communication skills, better problem-solving skills and reduced behavioural problems.

Mr. d’Entremont said the department will use the report in its budget planning for next year.
There have been 117 children in the program so far, but the Health Department estimates there could be about 250 children at any given time who could benefit from it. Children are picked at random for treatment.

New Democrat health critic Dave Wilson and Liberal MLA Leo Glavine grilled Mr. d’Entremont in question period about expanding the program.
Mr. Glavine raised the case of a parent whose child was not picked for treatment and who pointed out the government under-spent its mental health budget by more than $1.5 million in the last four years.

"Why isn’t the government committing this money to help families like Jim Young and their children coping with autism?" Mr. Glavine said.
Mr. d’Entremont responded that there’s lots of competition for money.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.
( djackson@herald.ca)
________________________________

[Andrew Kavchak]

From: http://thechronicleherald.ca/Editorial/1088192.html

The Chronicle Herald (Halifax)
EDITORIAL

Treating autism
Tories need to step up
Mon. Nov 3 – 4:46 AM

THE provincial government deserves much praise for putting $4 million per year into a two-year-old program that a new study shows greatly benefits preschoolers with autism.

Now Premier Rodney MacDonald’s Tories have a duty to do more.

It’s no exaggeration to say that children diagnosed with autism who receive early intensive behavioural intervention often can have their entire lives changed as a result. Instead of individuals whose ability to function remains significantly impaired, thus needing state-funded support over a lifetime, people with autism who get this treatment can often contribute greatly to society.

Given the vast difference such treatment can make, it is simply unconscionable a significant percentage of preschoolers diagnosed with autism won’t get the help they need, because their names didn’t come up in a lottery system. There are not enough spots in the program, offered at the IWK Health Centre, for all young children with autism in the province, so the lucky ones get in while the unlucky ones do not.

The difference in outcome, unless parents can pay for the expensive treatments privately, can be tragic.

Officials at the Department of Health say there are no plans to expand the program. That direction, indeed, has to come from government. Last summer, Health Minister Chris d’Entremont said that more funding for autism was needed, rising to perhaps $6 million to $8 million per year. It’s now time to make that commitment.

The results of the study released last week not only show the program significantly helps preschoolers with autism. The survey also revealed that the Nova Scotia-designed approach – which uses roughly half the hours per week compared to what the literature recommends – may point to a more resource-effective way to help those with autism. Critics are right to be skeptical until further follow-up studies are done, and the research is scientifically peer-reviewed. But there’s no question that if the results are borne out, there will be huge implications for autism treatment everywhere, since a lack of resources, such as finding trained staff, is a universal issue.

In finding more funding for this transformative program, government must also not rob other patients. Given the size of the total provincial budget, and glaring examples of waste in the past, surely $4 million more can be found to end a system that now randomly denies publicly funded, life-changing treatment to too many preschoolers with autism. No one should be satisfied with such a roulette-wheel approach, not when the stakes are so immense.

Many parents left out, of course, now turn to the private sector, using up their savings – if they have any – to do what any parent would.

The preschoolers’ treatment program is not the only answer, of course, to help the growing numbers with autism within our midst. Many school-age kids and young adults with autism also need services. Diagnosis still takes far too long. But the far-reaching potential of the IWK program should be clear to all. Government should do the right thing and expand its reach immediately.

[Ed Hillman]

Hi fellow FEAT members,

For those who are perplexed by my post, I am a running Canadidate in the CBC show "Canada's Next Great Prime Minister". This show is a nationally televised program on CBC Television and a competition opened to Canadians aged 18-25. Through debate and challenges, the candidates are narrowed down to four who appear on CBC Television, where they engage in a heated debate on the issues facing Canada today. The audience votes and the winner receives $50,000 and a paid internship at Magna International.

What does it have to do with FEAT? One of my major proposition is to include autism under Medicare. More specifically, to provide government funded, but scientifically based treatment to Canadian families. Although I will not be able to propose a bill (I am not really going to become the prime minister, although I wish I was), this will be a good way to send out our message nationally to a younger audience and hence counter some of the crap CBC has produced in the recent past (the Michelle Dawson segments).

Therefore, I am asking you for your support and votes (internet votes).

You can see my audition tape and platform speech by clicking on the following link: http://www.cbc.ca/nextprimeminister/candidates/edwardchen.html

To vote for me, simply rate the video on the website (1-5 stars) and if you wish, leave a comment with your thoughts, support or objections.

If you have any questions or concerns regarding any of my propositions I made, or you need any clarifications, please feel free to send me an e-mail and I will happily respond an address to each of your concerns in detail. Also, please pass this message on to those who may be interested in voting.

I thank you all deeply for your time and support,

Ed.

[Andrew Kavchak]

But, but, but…There's always an excuse. It works, but….
________________
From Halifax Chronicle Herald

Autism therapy works, but . . .
Province won"t expand program

By JOHN GILLIS Health Reporter

Thu. Oct 30, 2008.

A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.

But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.

Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.

She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.

Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.

Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.

"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon’s challenging behaviour improved with continued support."

Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.

But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.

The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.

Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.

"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."

The program costs $4 million a year.

( jgillis@herald.ca)

[A Father]

Can anyone give me income tax advice?

What is the best expense to use for income tax deductions: consultation or aba therapy or both?
And is it under Medical Expenses or Education?

Thanks!
J

[Super Dad]

If you haven't watched the third US presidential debate, here is the part containing the references to autism:

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

Here are the transcript and some excerpts:

http://latimesblogs.latimes.com/washington/2008/10/debate-transcri.html

MCCAIN:

Well, Americans have gotten to know Sarah Palin… She understands reform. And, by the way, she also understands special-needs families. She understands that autism is on the rise, that we've got to find out what's causing it, and we've got to reach out to these families, and help them, and give them the help they need as they raise these very special needs children.

OBAMA:

…I think it's very commendable the work she's done on behalf of special needs. I agree with that, John.

I do want to just point out that autism, for example, or other special needs will require some additional funding, if we're going to get serious in terms of research. That is something that every family that advocates on behalf of disabled children talk about.

MCCAIN:

And I just said to you earlier, town hall meeting after town hall meeting, parents come with kids, children — precious children who have autism. Sarah Palin knows about that better than most. And we'll find and we'll spend the money, research, to find the cause of autism. And we'll care for these young children. And all Americans will open their wallets and their hearts to do so.

[Andrew Kavchak]

Hi Folks,

Since the Ontario government announced the start of an ABA/IBI program for kids with autism in the Social Services department in 1999 (which did not actually begin until 2000), there has always been concern about the inconsistent "discharge" criteria across the province. To be more precise, there were no discharge guidelines that could help parents understand why their kids were getting kicked out of the program and why it appeared that the service providers were doing things differently across the province. Well, a few years ago the government decided to create a "panel" to develop the benchmarks. Well, now it seems that what has been developed and made public is causing more grief. It appears that if your kids does make enough progress within a year, they are discharged. You wait for the diagnosis, you wait on a waiting list to get treatment, then after the most precious period was lost, you spend a long time developing a working relationship with therapists, and then a government assessor says that things are not picking up enough, fast enough, and you're gone. The Toronto Star has an editorial on the topic…

EDITORIAL
TheStar.com

Autism battles continue

Oct 19, 2008

Relations between parents of autistic children and Queen's Park remain uneasy after years of battles over waiting lists and eligibility for government-funded therapy known as intensive behavioural intervention (IBI).

So it is not surprising that some of those parents are wary of a recent report by an expert panel that recommends a series of benchmarks to be used to monitor an autistic child's progress while receiving the costly one-on-one therapy.

Some are concerned the benchmarks could be used to ration the program by prematurely discharging children. They also worry there aren't enough supports available for children who are deemed not to need IBI any longer.

Kevin Spafford, a spokesperson for Children and Youth Services Minister Deb Matthews, says the goal of the benchmarks is to ensure clinical decisions "are based on the best scientific evidence of which children will benefit, how long they will benefit for, and when they have reached their maximum benefit from the program." He says parents have asked for a more transparent and consistent IBI system, and points out that the expert panel included two parents.

Spafford also says the government funds many follow-up support services, such as speech and language programs, and is continually building on them.

But that may not be enough to reassure some parents, who remember bitterly the fight they had to wage against a government age cap, which used to cut off IBI once a child turned 6.

The government is reviewing the panel's recommendations. However it proceeds, it will have to do more to allay parents' fears.

[Author]

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