Brace for impact statements

At the legislature, the provincial New Democrats have yet to question the Campbell administration's decision to shutdown its early intensive behavioural intervention program for autistic children. But the ministry of children and family development is already under pressure outside the legislature to reverse that decision. This morning, Moms on the Move - an advocacy network for children with autism and special needs - sent out an appeal for "impact statements and personal accounts" from parents whose children are graduates of the intervention program or on its wait list. According to the email, the network needs "impact statements that illustrate how these program cuts are denying your child an essential service." Meanwhile, one of those parents - Catherine Clark-Turnquist - has already sent her own impact statements to Children and Family Development Minister Mary Polak and New Democrat Juan de Fuca legislator John Horgan. The following is a complete copy of those emails.

----- Original Message -----
From: Moms on the Move
Sent: Monday, September 21, 2009 9:53 AM
Subject: Fw: An appeal for statements from parents affected by Autism Program Cuts

Hello Everyone,

This is an appeal to ALL parents of children who are either graduates of, or have children on waitlists for, the Autism Programs EIBI/EAIP affected by the funding cuts.

Parents of graduates: we need impact statements and personal accounts that can illustrate for our MLA's "appreciable improvement and productive result" of your child attending these programs.

Parents of children waitlisted: we need impact statements that illustrate how these program cuts are denying your child an ESSENTIAL service. The EIBI/EAIP's are NOT for a select few but for everyone to apply for on behalf of their child.

The parents of Queen Alexandra Centre would like you to e-mail this important documentation to: thewoodwakes@shaw.ca

MISSION STATEMENT

Desired outcomes from action against funding cut to EIBI/EAIP:

Foster discussion between MCFD and service providers, in consultation with parents
Persuade minister to review funding decision
Reversal of decision

Thank you!

***

Dear Mr. Horgan,

I write as your constituent, an NDP supporter and the mother of a child affected by yesterday's announcement from Minister Polak.

My son William is three years old and was diagnosed on the autism spectrum just over a year ago. We were put on the waiting list for Queen Alexandra's intensive intervention program and after a year, got a place. William started there three weeks ago and even in that short time I have seen improvements in his speech, which is his major developmental issue.

My husband and I were so relieved that William may be able to enter Kindergarten at a developmental level at least close to that of a neuro-typical child. I've no doubt that you can appreciate the implications for the rest of his education, job prospects, overall potential; in short, his life.

Then yesterday, without warning or discussion, it was all yanked away. The afternoon sessions were cancelled for all the children and the parents were called and asked to come pick up their children at almost no notice.

The reason for this was that the senior staff at QA had just found out about the minister's decision to axe the program and were scrambling to inform staff before the government news release was issued. Unfortunately, they weren't fast enough and the announcement was public without any warning or any negotiation with the Queen Alexandra facility.

Gross insensitivity aside, this is a very poor fiscal decision. Below are a few key facts and statisitcs that incontrovertibly demonstrate the value of investing in early intervention therapies, versus the cost to educational and other social systems later in life.

There is a great deal more data and empirical evidence to support this, but I'm trying to keep this email as succinct as possible. Most noteworthy among the points below is the estimate that the lifetime health care cost savings are $2 million per individual. On that premise, it could be argued that Minister Polak's attempt to save $5 million by eliminating services for 70 children will eventually cost the health care system $140 million.

To characterize this funding cut as promotiong "equity" is, at best, disingenuous. In brief, regular funding for autism services for children under 6 is $20,000 per year, per child which purchases about 7 - 8 hours of therapy a week. The cost per child for intensive therapy is about $70,000 per year for 20 hours a week. Minister Polak proposes to end the intensive program and use the savings to increase regular funding to $22,000 per child, per year.

That extra $2000 does not add up to the $5 million annual cost of delivering the intensive program. $2000 per child for the 800 B.C. children with ASD equals $1.6 million. The remaining $3.4 million is unaccounted for, barring a vague reference to "outreach" in rural areas.

But of course the qualified clinicians and interventionists are generally working in urban centres in purpose-built facilities, which begs the question of how the minister envisions such rural outreach to be implemented.

The other points below soundly refute the minister's claim that outcomes for children receiving fewer therapy hours per week are no different from outcomes for children receiving early and intensive intervention therapy. Moreover, the increase in regular funding from $20,000 to $22,000 per year for children with ASD is so inadequate an amount as to be negligible. It equates to about one extra hour per week. And as any parent of an autistic child knows, half of a two-hour session may well be spent calming down a child who didn't want to take off his shoes or some similar situation.

Our children's futures are on the line. Please consider raising this issue during Question Period and do let me know if I can provide any further information, whether that be anecdotal, academic or statistical.

Thank you for your attention,

Catherine Clark-Turnquist

***

Dear Minister Polak,

My son William is three years old and was diagnosed on the autism spectrum just over a year ago. We were put on the waiting list for Queen Alexandra's intensive intervention program and after a year, got a place. William started there three weeks ago and even in that short time I have seen improvements in his speech, which is his major developmental issue.

My husband and I were so relieved that William may be able to enter Kindergarten at a developmental level at least close to that of a neuro-typical child. I've no doubt that as a mother and a former school trustee you can appreciate the implications for the rest of his education, job prospects, overall potential; in short, his life.

I implore you to review your decision to cut off funding for early, intensive intervention programs. Below are a few references to studies that incontrovertibly demonstrate the value of investing in early intervention therapies, versus the cost to educational and other social systems later in life.

Most noteworthy is the estimate that the lifetime health care cost savings are $2 million per individual. On that premise, it could be argued that an attempt to save $5 million by eliminating services for 70 children will eventually cost the health care system $140 million.

Moreover, the increase in regular funding from $20,000 to $22,000 per year equates to about one extra hour per week, although it's more likely that the $2000 will simply be swallowed by the Harmonized Sales Tax, to which autism therapy services will be subject.

All documented research decisively indicates that outcomes for children receiving early and intensive intervention therapy enter school at an appropriate developmental level that allows them to learn and socialize well. The best way to foster the equity mentioned in your news release is to help ASD children catch up as much as they can before they start school.

The 8 hours per week that William had been getting while we waited for a place at Queen Alexandra were not enough to prepare him for Kindergarten. The intensive program he just started is his best chance of keeping up and staying in school.

The children receiving 20 hours per week are not an exclusive club. Any child with an autism diagnosis can go on the waiting list for the program. Some families have moved to where the treatment is available and all of them have waited for an available place.

Our children's futures are on the line. Please reconsider your decision. This is an opportunity for you to demonstrate that you care about more than getting re-elected.

Thank you for your attention,

Catherine Turnquist

These statistics are from a presentation given by Gina Green (PhD) this year at the Association of Professional Behaviour Analysts Conference.

* Estimated savings from investment in early intensive ABA: at least $2 million per individual in childhood and adult services costs combined (using 1996 Pennsylvania costs) - (Jacobson, Mulick and Green, 1998)

* Millions in health care costs over the lifespan - (Leslie and Martin, 2007, Mandell, 2007)

* Best available evidence indicates that competently directed and delivered early intensive ABA intervention is especially effective (Dawson 2008, Eikeseth 2008, Myers et al, 2007, Rogers and Vismara, 2008)

* Bills are planned for 26 states in the US to seek state health care coverage of appropriate ABA services - thus far SC funds: 50K/year, AZ funds $50K/year; TX funds $50K/year while FL, LA, PA, and IL fund 36K/year

* Two large studies (Birnbauer and Leach - 1993 ) and Kldevik et al (2006) showed that intensive ABA (25-40 hors/wk) produced larger improvements than typical EI/special ed, eclectic interventions and low intensity ABA in all areas of functioning. Just under 50% of children made large gains, 40% make modest gains and approximately 10% made small gains as measured on standardized assessments.

14 Comments

Good work here. I hope against hope the Minister made the right call... and there are other treatments out there, hopefully the BC gov't will look into them if they stick to their guns.

Thanks Sean for continuing to cover this issue. I am shocked at the heartless way in which the Queen Alexandra program was shut down. The manner would be disconcerting for a neurotypical child. For an autistic child it is hard to comprehend or describe how horrible it would be. Do any of the folks, including the Minister, who made this decision even know an autistic person?

One correction to my letter to Minister Polak: Since I sent it, I've learned that autism services will not be subject to the HST. Even so, I stand by everything else I've said.
Catherine Turnquist

Excellent letter, Catherine!
To say that rural communities will have the same access to these services is absurd. Larger cities and provincial capitals always have "centres of excellence" where experts live and work. Where are universities or teaching hospitals located?!? This program operated on the same premise as the Cancer Centre, or the Pediatric wing of the Victoria General Hospital- its only available in a city large enough to accommodate specialists (developmental pediatricians, speech language pathologists, pediatric physios, etc). This decision is shocking and truly disgusting, the liberals should be ashamed.

Thank you for writing this article. We need to get the word out there that our children's futures are on the line here. These children are just as much a part of the community as anybody elses children and they should be entitled to therapy that will allow them to successfully function in our society. Do we cut back on chemotherapy or radiation here in Victoria because it's not fair that someone in Fort St. John isn't getting the same treatment? No, that would be stupid wouldn't it? So is this. EIBI is a necessity!! Reverse your decision Mary Polak!!!

This is a great letter, Catherine. Thanks for writing it.

Sean, thanks for keeping this issue alive.

Chris McIntosh

I am one of the parents waiting with hope. While my youngest son, 1 ½ years old, is not on the EIBI/EAIP waitlist yet he IS waitlisted for an assessment for Autism. What is in store for his future if the EIBI/EAIP is not there for him after a diagnosis of Autism Spectrum Disorder??! By all accounts it doesn’t look good. To my horror and shock, the very programs proven to give children with ASD a fighting chance are being yanked away instead of having more spots made available. I would rather wait with hope of getting the required hours of therapy to see appreciable difference, than to have no hope at all of providing him with this essential service. Does our government not value these little people enough to provide care?

I am in the unique position to know exactly what my child will be missing with these program cuts. My older son, 3 ½ years old, was diagnosed with Autism and has been receiving intensive therapy at the Queen Alexandra Centre since December. I'm not sure I can explain to someone, who has not had this experience themselves, what a tremenduous impact securing intensive therapy for your child can do to improve the lives of entire families, communities. My family has made many, many sacrifices to stay in a city that provides these services. It was, and is, an easy decision to live here in Victoria to access this essential service for my child. Much like a cancer patient from Port Hardy moving to Vancouver to receive treatment. Would the government take away treatment funding to some and spread funding to all people with cancer only to leave ALL without adequate care? A chance for life? This is NOT what equity means.

My sister in-law is expecting her first child in the new year. When I look into her eyes, as we talk of our concerns about these funding/program cuts, I see that expectant parent’s look of fear. I know that look only too well. Is this what’s in store for my future child? A parent's worst fear....a child with a special need AND a government taking away funding to programs that provide the hours that they admit improve the outcome for these children. Nightmare in the name of equity.

Let's get this decision REVERSED!!!


One thing I feel I have to note: There is another side to this debate. One parent w/ a cerebal palsy child wrote in a comment - that quite frankly the tone of which could be improved - and said, "Now if Minister Polak wanted to something meaningful, she would eliminate the whole autism program and eliminate diagnosis-based funding. ... There are many children with special needs that would love a fraction of the service that autistic families receive. Why is a child with cerebral palsy less deserving than a child with autism? Both need substantial early services in order to develop to their potential. An autistic child will now receive over 22k in services, the child with cp will need to get by with about 2k (about half of what would be reasonable). Where is the equity?"

Perhaps this is what Minister Polak was doing - after all, her mum had cerebral palsy. It's also worth noting that at 5:06 of this YouTube Minister Polak says in The House, "I'm really proud of the work of government and of my colleagues as we've sought to provide better supports for children with autism. When we took office, there were only a few hundred children with autism who were provided with government funding to give them service — only a few hundred. Right now in British Columbia there are 6,000 children with autism being served through our funding. I'm very proud of that, and we all should be."

Great letter Catherine! The extra costs of not providing this treatment would be even higher than you suggest, though, since the 70 kids currently getting EIBI would rotate approx. every 3 years. So at current capacity the program would serve some 250 children over a decade, saving taxpayers about $500 million in the long run.

Expanding the program to include more of the children who need this really intensive intervention would have saved BC taxpayers even more over the long run.

The other issue of course is the Minister's truly shameless and egregious misrepresentation of the research on the effectiveness of intensive early intervention in autism to justify this inexcusable decision. We now have decades of research by the world's top academics and clinicians in the field of autism that have all conclusively demonstrated that investing in intensive early intervention dramatically improves outcomes.

The Minister has with the sweep of a pen denied 70 children the chance of living a nearly-normal life. It's absolutely and totally unconscionable!

And for what? So that we can contribute another $5 million to the Olympics?

Josef, you raise a good point regarding equity. Intensive early therapy provides equally important benefits for children with other disabilities, including Down Syndrome, Cerebral Palsy or FASD, who currently receive little or no support from government in BC.

We need to build on and expand current programs like EIBI to expand to serve all the children who will benefit. This is the equity issue that many people have been urging this government to address. But instead they're doing the exact opposite. In addition to the cancelled EIBI program, we have seen the cancellation of a pilot program to serve children with FASD and inner city early intervention programs in Vancouver threatened with closure due to funding constraints.

This government is forcing parents to go to court again (and believe me, preparations are being made as we speak!) which means we'll be wasting more millions in tax dollars fighting parents instead of serving their children.

But a society that places investment in an international sporting event ahead of the need to invest in vulnerable children is a doomed society and our political representatives need to start waking up and realizing this.

One thing dawn steele I must gripe with you about is you claim, "We now have decades of research by the world's top academics and clinicians in the field of autism that have all conclusively demonstrated that investing in intensive early intervention dramatically improves outcomes." Yet, I have yet to see a hyperlink to such studies.

I do understand the anger involved here and not just as an Aspie. I'd be torqued off that RuralBC is getting a massive increase and the arts - the arts! - is possibly being spared thanks to some high-powered lobbying from Kim Cathrall, but not autism. I'd be torqued that it seems - and I'm hoping I'm wrong - nobody is wheeling & dealing to cut X, Y and/or Z (and very little of that supposedly scandalous Olympics can be touched at this point) to save this program - I'm sure Minister Polak would be receptive to that kind of lobbying, being she (and Rich Coleman) wheeled & dealed to help save Langley Seniors Outreach. I'd be torqued there are exactly zero press releases from the BC NDP Caucus on this, but then again I am happy they are very afraid of Min. Polak and becoming target practice.

So yeah, I'd be angry too. There are other therapies out there and I would encourage those parents to try those plus come up with a funding plan for autism treatment instead of running to the lawyers w/ years of delay. Also I honestly recommend that if you want more support, please stop pitting this against the Olympics - it won't work and won't help anybody or anyone.

As per Sean's latest post, I feel obliged to note the BCNDP is going to do something about this. Otherwise, I stand behind my remarks.

I am the mother of a child in the Queen Alexandra program. I have experienced therapy for my son in two ways. The first was immediately after he was diagnosed, and the $20,000 per year funding kicked in. We were very grateful for this funding, and set to work getting our son set up with services. We quickly found that the funding was going to provide us with minimal therapy to our son in the form of hours and quality therapy. The consultant and interventionists that worked with him were caring and keen and worked very hard. It became apparent that the lack of experience and minimal training on the part of the interventionists was not going to bring my son much closer to "typical" at any great speed. I really worried about how much progress he might actually make before he aged out of funding, but there was no one more experienced that we could afford that was available. We did see some modest changes, and hoped it might be enough to prepare him for school. We hoped that we might get a place in the QA program before it was too late.

Then, we got the call that there was a spot for him after almost a year. After 2.5 months in the QA program, his improvements literally brought me to tears. He was gaining confidence and skills, and was learning to control his crippling social anxieties. It dawned on us, that with this continued intensive therapy, he could likely be and do anything he wanted when he got older. The hope for his future we had started to lose was suddenly back, bigger than ever.

Then, in one morning and one swipe of the pen, that hope was dashed again, in the name of "equity". If equity means that we are all to be served with less than minimal funding to receive less than adequate services, then we truly are in trouble. With the government's $22,000 per year, one can't even purchase the minimum amount of hours (20)that is recommended in study after study by experts in the field. One might be able to get half that amount. Which means my son will potentially meet only half of his potential. that is unacceptable.

These programs are not "Cadillac" services, and I am truly offended to hear them referred to as such. They are not a luxury purchase. They are a necessary treatment for my son. They are what is minimally required for every autistic child. Some people are only able to get into these programs with much personal and family sacrifice, and even relocating. I do agree with one thing Minister Polak has stated. We need to get more professionals, etc. into the more rural areas of our province. We need to make quality services available everywhere. Does that have to happen at the expense of those already being helped immensely by these programs??? We need to be expanding on what already exists and making it better.

We are quite literally fighting for our children's lives and futures. We want them to have the very best chance at being productive and happy members of society, and not a future drain on society.

It has been said time and time again that a government should be judged on how it treats its most vulnerable citizens. This government will be judged on this decision, and it's not too late to reverse it. The "Best Place on Earth" should be setting an example to the rest of the country on how our special needs children should be treated, not sitting in their shadows.

I implore the Minister to reconsider this decision and to consider taking a meeting with the families that have been affected by this decision.

You know we are living in dark days indeed when the government begins dismantling the therapy funding for helpless children. I suppose it is a smart move by the government as these children can’t voice their concern over the negative impact this will have on their future and huge increase in cost it will later have to society.
Is this the type of government we voted for?
Approximately one in a 150 boys is diagnosed with Autism and this continues to rise at an increasing rate.
In a recent 50 million dollar Lotto 6/49 jackpot, the odds were one in 13,983,816. Hundreds of thousands of parents bet on this jackpot. Your odds are considerably better with an Autism diagnosis.
Save your lottery money, you will need it if your child is diagnosed.
The government of British Columbia offers these families $20,000/year to cover therapy up to the age of six. Therapy costs approximately $80,000/year. This therapy is scientifically proven to be effective and is well documented. This means families who have a child who has been diagnosed with Autism have to find $60,000 from somewhere. This is often debt.
Most of these parents divorce. Selling the family house to fund therapy is common. The sale of most items of value to generate funds for therapy is a given. A life of guilt and depression is to be expected. Alienation from friends and family will occur.
Their life as they knew it is now over.
If they are lucky their child won’t bolt and get lost for days. If they’re lucky their child will learn to refrain from self damaging behavior. If they’re lucky, their child will learn not to throw up after eating. If they’re lucky, their child will learn to speak a few words. If they’re lucky their child will not be teased, ridiculed, beaten up and harassed on a daily basis at school. If they’re lucky their child will graduate from high school.
Most won’t be that lucky.
Last week, without any consultation or warning, the Mary Polak (Minister of Family and Children Development) pulled the rug out from under these parents who are already enduring so much by eliminating their ability to control these funds. The government, who have consistently failed to understand the needs of these families has taken it upon itself to eliminate the option to do Direct Funding (direct from the parents to the service providers) and has instead dictated that these parents have to tow the line of mandated Invoice Funding where the government pays the service providers. This will increase overhead costs, delay the payments, reduce the quality of care and will make paying these service providers extremely difficult therefore reducing the amount of usable funds and discouraging assistance.
The frustration in the Autism community lies in the fact that these parents, who are on the brink of financial collapse, already spent precious funds to fight the government in the courts a few years ago to protect their children and won the Auton lawsuit (Auton vs BC Gov). The government at that time did finally put Direct Individualized Funding into place. This allowed parents to fund their child’s ABA programs and since that time parents have built a strong, quality base of ABA service providers that is making a real difference to these children. The ABA program takes a child who would otherwise be lifelong financial burden on the society and in many cases makes him/her self sufficient.
In these financial times are we prepared to sacrifice the children? Do we want to go down this low moral road? Are we prepared to make the small amount of funds these parents receive that much less and that much more difficult to put into action? Why is the government spending more tax money just to make it difficult for these parents?
For all that is good a decent, please spare the children.

Leave a comment

Copyright © 2004 - Public Eye Mediaworks. Reproductions of any portion of this Website are permitted only with the expressed permission of Public Eye Mediaworks.
Canadian Web Hosting graciously provided by dotcanuck Web Services. Layout and graphics courtesy of Art Department Design.