Crusading by candlelight

Catherine Clark-Turnquist has acknowledged she's lost her fight to stop the provincial government from cutting the $5 million it spends on early intensive behavioural intervention for autistic children. But Ms. Clark-Turnquist said that government will continue to hear from her and other parents who have lobbied against that decision. In an interview on Public Eye Radio, said they'll be holding a candlelight vigil later this month at the legislature to mark the shutdown of the intervention program at Queen Alexandra Hospital - which takes effect on January 29.

Ms. Clark-Turnquist said she wants to "remind the government that this is a very unfair and very, frankly, cruel decision."

She acknowledged the shutdown will mean every family with an autistic child will get an extra $2,000 in government funding per year for a total of $22,000.

But Ms. Clark-Turnquist that funding comes at "a catastrophic human cost. And I think Minister Polak is hoping that - come January 31 - this whole episode will be over. But, as far as I'm concerned, this is just round one."

"I think our group of parents has coalesced into a fighting force. And I think we're committed to carrying on trying to advocate for not just our own children but children on the spectrum and trying to get them adequate services."

Ms. Clark-Turnquist said a firm date for the vigil has yet to be set.

The government's early intensive behavioural intervention program currently serves 70 children - including Ms. Clark-Turniquist's son.

3 Comments

It must be hell on wheels for the families that have autistic children and most reasonable people feel for them. This government seems hell bent to shut down anything that they can. Spend the money now, or spend a whole lot more later. I pay taxes for many things that maybe I don't use but have no qualms paying taxes so young kids that need special programs can get what they need to be able to participate in schools. Be a squeeky wheel if necessasy, and fight for your children and more power to you for not just walking away

I am planning to also fight for the future of all autistic children in BC along with Catherine and the rest of our group of parents. Anyone else who would like to answer the call will be more than welcome. Every person can help. Be it by contacting the Premier, The Minister or their own MLA, we need voices telling our government that this is not an acceptable way to treat these children or their families. Come out to our rallies...join our Facebook group to keep updated on events, etc. (search for F.A.I.R. on Facebook)

The old adage pay me now or pay me later is very appropriate in this situation, though we could edit it to read pay me now, or pay me WAY MORE later. what a short-sighted decision by our very embattled Minister of Children and Family Development. Save $5 million now (a pittance), and taxpayers will pay BILLIONS of dollars as these children grow up to be adults with autism. Not to mention the additional billions for the children not yet diagnosed, or yet to be born.

We need to take care of ALL OF THESE CHILDREN! I find it ironic that her title includes the word Development. This is exactly what we are talking about. It is imperative that children with autism receive as much intervention as possible by the time they reach 6 years of age. That means early diagnoses, and funding the minimal amount (proven by science) of 20-40 hours per week of therapy. This should be delivered by a centre based integrated team of specialists. This is called EIBI (Early Intensive Behavioural Therapy) and this is what is being cut. To reach their full DEVELOPMENTAL potential (here lies the irony), this is what each of these children needs. Not all children with autism need this level of intervention, as it is a spectrum disorder. That being said, should parents and families want or require this level of service, it should be made available to them.

Alberta funds every child with Autism in their province (until the age of 19), and each child gets whatever amount they need. Alberta runs a higher defecit than BC. Does this mean they are better at simple math and can see the financial picture further down the road? Or does it mean that they are more in touch with their moral and ethical obligation to meet the needs of their special needs children?? Maybe both? Either way, our provincial leaders seem to be lacking in these skills.

We have just signed up with our new service provider for our son's services. We went from approx. 20 hours per week at the Queen Alexandra Centre (centre based, integrated team of specialists) to home based, no integrated team, and 9 hours per week. That is what our government is willing to pay for. We have been told that to adequately cover the needs of an autistic child's therapy will cost $60-70,000 per year. We are now being given $20,000 per year ($22,000 effective April 2010)The hours above are what that money will cover. 9 hours. When science has indicated that a minimum of 20 is required.

Minister Polak has been given a study done by Eric Laarson of the LOVAAS Institute (Dr. Lovaas was the founder of the current EIBI/ABA delivery method) that shows the state of Minnesota (which has roughly the same population as BC) fully funds all of the children with autism, and that it has indeed saved them a billion dollars to date. They have been doing this for 10 years, and have been very successful at it. All provincial MLA's have also been given this study. No one seems to care. Dr. Laarson has made himself available for phone calls from our government, and has indeed spoken with the Minister who does not want to hear what he has to say. He has indicated that he can show them how to efficiently and cost effectively run the programs required. This is falling on deaf ears. Though, why should this surprise us, considering the decision was made with no consultation with the families or professionals/experts in the field.

The government would like the public to believe that this decision was made in the spirit of fairness to the families that were not participating in the EIBI programs across the province. Let's cut the progam and spread the crumbs of what's left around to the rest of the families. They would like the public to think that we are talking about 70 priviledged families. We are not. This is not FAIR. Autism is a spectrum disorder. That means a range of symptoms, and a range in the severity of them. How does giving everyone equal funding equate to fairness? Some people need more, some people need less. We know that every child needs 20 hours per week. This is not about 70 families. The programs were open to every family in the province, and there is a wait list. Some families uprooted their entire lives to move to where the services were. This is about making the programs available to every child with autism in the province.

Is the Minister not responsible for standing up and advocating for our children? Why then, didn't she ask her Premier or Finance Minister for more money and fight for it? Why did she do the easy, lazy, cynical, heartless and cruel thing and cut these programs? She took advantage of our children to look good to her boss, and tried to look like a hero doing it, by claiming it was in an effort to be fair. She wants to split the autism community into haves and have nots, and pit us against each other in this fight. She should realize that we are fighting for all children, not just our own. It might be worth mentioning that a senior autism expert for the Ministry is finding it surprising in transition meetings with families that they will not continue to get the same hours they had been receiving. I am thinking that this Ministry is so incompetent that it did not, and still does not have any idea as to what impact this decision will have.

The government is not even saving money by this move. They are simply shuffling money around. I've been told by an ally in this that it's like having a car that really needs oil, but instead you buy new seat covers. Senseless.

This is not just the fault of Minister Polak, or Premier Campbell (by supporting her decision), but also about every single MLA who has been provided with all this information and still chooses to remain silent. Taxpayers should know that they are going to be shouldering the burden of this decision for many, many years to come and they should be mad about it. They should speak up. They should act.

I realize this is quite lengthy, so will wrap it up though I could go on for hours.

Reinstating this program will not cost the taxpayers a single dollar. Expanding it will save billions in future costs. Every person in this province can make a difference when they join their voice with ours. Some of our kids don't have a voice. Please be one united voice for them.

This is your call to arms. If you would like to know how to help, please email bcautism@gmail.com

Hollie Davis

Just a few points.

Some parts of our battle to save EIBI are lost. Others most definitely are not lost.

The EIBI center run from Queen Alexandra has been shut down. Over 40 people lost their job. I suspect finally their voices, which have been silenced for so long by VIHA, will now be able to be heard. This fight has been lost.

Catherine did a superb job outlining the issues at stake here on CFAX 1070 yesterday. Unfortunately CFAX does not have online archives. We're looking at ways to obtain a clip of this interview and make this interview more widely available in some format.

The public does need to know the following things, which Catherine so articulately stated on your show:

- Autism is a spectrum disorder, meaning it has a great variation in severity. It is clear this embattled minister, Minister Polak, does not understand autism, despite having a niece that went through the EIBI program, or she could not possibly believe that giving equal funding to children with a spectrum disorder was fair.

- It would not cost Minister Polak one penny to reverse her decision. She shuffled money out of the program. She can, even now, shuffle it back. All this grief has not saved her ministry, or the citizens of BC, one penny. It will cost BC taxpayers millions. Every British Columbian concerned about rising taxes and falling services should care about this decision.

- This decision is not irreversible. If this decision was reversed tomorrow, children in all centers except Victoria could continue as they are now.

- This Minister has a budget of approximately $1.4 billion. Increasing funding by $2,000 per child is costing $1.6 million, .1% of her budget. Why did she choose to take money from the $5 million allocated to the most vulnerable children in her care to implement her misguided notions of fairness?

- If this government believed in science, family values, and sound fiscal management, it could expand this program to all 800 children. Minnesota, with a population slightly larger than BC's, has an EIBI program available to all. They are currently enjoying savings of $1 billion dollars.

I have the following questions for Minister Polak:

Do you believe the many studies that say that EIBI programs save millions of dollars per child? If so, why are you continuing to hold to your decision to cut this program, when doing so is not saving one penny, but will cost BC taxpayers dearly? How can you call yourself a good fiscal manager when you continue to ignore such massive savings? Will you reverse this decision, at a cost of $0 to your ministry?

That's just to restore the old program. I have other questions regarding expanding to all children in the province who believe it might help their families.

You have stated that it costs too much to expand this program. Yet when I have personally asked your staff how much it would take to expand this program, they have stated they do not know. How can you say it would be too expensive to expand when your own ministry has no figures on this subject? Dr. Eric Larsson is a leading world expert on delivering cost effective EIBI programs. We have been in touch with him. At our urging, you and your staff have contacted him as well. Yet, we have confirmed with him that your conversations centered around autism centers, outreach programs, and the like. There was no discussion of delivering a cost effective EIBI program. How can you possibly say it is too expensive to deliver such programs when you have not explored this option when talking with an authority on the subject? Why do you want to build an autism center, to conduct ground breaking research, when you are cancelling a program research has already discovered works?

Chris

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