[Lou Arab]

One more thing…

I just wanted to echo some of the comments already made about the good that the Auton challenge did do.

I can't imagine being one of the Auton families and putting 10 years into a legal battle only to get this result at the end.

However, if it makes you feel any better, I'm not certain we would have even heard of ABA were it not for Auton. Or we might have heard of it, but not investigated it enough. Or we wouldn't have been able to access consultatants to design and deliver a program to our son. Or, we wouldn't have been able to access the funding that we did (some from BC, more from Alberta) to run those programs. The funding isn't enough, but it was enough for some families (like ours) to bring an ABA program into the realm of possibility.

Ethan has gained 15 IQ points since starting ABA. His language skills have gone from the single digit percentlie to over the 60th. He's engaged with the world now – talking, listening to what's going on, asking questions, and questions, and more questions, getting into trouble, starting to gain friends. He has further to go – but he's made a lot of progress. And the Auton families can take some share of the credit.

I think in the post supreme court world, governments will try to evade their responsibility to our kids. But it will be much harder than it was 10 years ago. Too many families have seen the benefit of ABA, too many reporters have learned about what ABA can mean to kids, and the public has become more educated and sympathetic.

We've been lied to and let down by all political parties. But political parties are not monolitic. They are democratic institutions made up of thousands of people like us. And not everyone in those parties is happy with the way governments have handled autism. I think we parents have to get active in what ever party we feel most comfortable in and start pushing the politicians from within, as well as keeping up the public pressure FEAT has been so good at. The battle is different now, the courts are not on our side, so we need to appeal to public opinion like never before.

Lou Arab
Ethan's dad

[Lou Arab]

Re: Scarce resources

I seem to recall Liberal Opposition MLAs promising 'needs based budgeting' for the Ministry of Children and Families. In other words, MCF was sooooooo important, that the government would decided what the need was, and budget accordingly – taking from other areas if necessary.

I guess our children don't need IBI then. Because politicians wouldn't break a promise would they???? Not to children with special needs?? Right??

Lou Arab
Ethan's dad

[Lou Arab]

Hi FEATers

I'm looking for parents who use Michelle from EAP as their consultant. I'd like to hear your experiences with her, good or bad.

Please email me at arab@shaw.ca

Thanks.

Lou Arab(Ethan's Dad)
Edmonton, Ab

[Lou Arab]

Joyce wrote:

She was started on an intensive program with an experienced therapist who had 4 years of full time experience with a Lovaas based program from Alberta. (EAP).

Lou has a question:

I think I am misreading this. What was the lovaas based program from Alberta? By EAP do you mean the Early Autism Project? Or something else? They are based in Vancouver and I'm pretty sure my son is the only Albertan recieving treatment from EAP.

Just wondering.

Lou Arab (Ethan's Dad)
Edmonton, Alberta

[Lou Arab]

About 15 months ago, Rachel and I moved from Vancouver to Edmonton. Now that we’ve been here for a while, we’ve learned a few things about how the system works out here. As a result, I’m getting more calls and email from BC parents thinking about making the move to Alberta for their children.

I thought I would post few of the basics, and if anyone wants more info, please feel free to email me at arab@shaw.ca

First the good:

There is a lot more funding for ABA in Alberta than in BC. My son is 4.5 years old, and we have had access to two funds of money adding up to almost $65,000 in the first 11 months we were here. We didn’t even use all the funds available to us.

The budget includes funds for Consultants, Line Therapist wages (including Revenue Canada payments and vacation pay), SLP, OT, PT, payroll/accounting fees, materials, and generous respite.

Second the annoying:

There are a lot of hoops and a lot of paperwork to go through to get funding. If you have an assessment from Sunnyhill that says Autism and/or PDD-NOS, your child will qualify.

The funds don’t quite cover everything. We have to pay a 5% parental share of the therapists, consultant fees, and materials. The budget for materials is frustratingly small, and runs out quickly. The budget for SLPs, PTs and OTs, don’t reflect market rates and we end up paying a little more on top. Things like lunches for workshops are not included and have to be picked up by parents.

Third, the bad:

Funding for children over the age of six exists, but there is no guarantee it will for very long. The government has no policy on this, and continues to extend funding on a temporary basis while court cases wind through the legal system. Some parents of school aged children struggle to get funding for more than a few hours per week because the Ministry of Children Services’ passes the buck to the schools which may/may not be able to integrate an ABA program into the classroom. Schools get funding for special needs kids, but are not very accountable as to how they use it. Add to the fact that due to provincial government budget cuts, Edmonton and Calgary schools are losing over 1,000 teachers this coming school year, and the temptation for principals to dip into special needs funding (which was always supplemented by general funds anyway) is high.

Regional differences: every region has different policies and practices. So what exists in Edmonton may not exist in Calgary. I’ve heard that in some rural areas, there are wait lists to get funding.

Finally, the real bad.

The biggest single problem Rachel and I have discovered since moving to Edmonton is the lack of decent Consultants.

In Vancouver we used EAP. They were not an ‘approved service provider’ here. Because of moving and setting up new lives and new jobs, our lives were too busy at the time, and we took the path of least resistance and moved to Autism Partnership.

What we got was a system where the Consultant would hold workshops in which she gave us general advice and information, and we (parents and line therapists) were left to write and design the programs ourselves. We protested this and were told that was the way AP did things. As a result, workshops were spent going around in circles trying to figure out what elements should go into programs. At most workshops, there was no practice time and our son might as well have not been there.

And AP is the best of the service providers located in Alberta. Others have practices (like bulk workshops for all their families instead of team by team) that make my hair stand on end.

We took the route of asking EAP to apply for status out here and are proud to be the first parents to bring them to Alberta. It took two months to get through the red tape, but I’m sleeping a lot better now. Our first workshop with them is next month.

If you are thinking about making the move to Alberta, check out the approved service providers first. Jean Lewis recently posted some good advice on the ‘Treatment topics’ board on questions to ask.

Lou Arab
(Ethan's Dad)

[Lou Arab]

The library at the Labour Relations Board is supposed to have copies of every collective agreement in the province. But, it's not always up to date.

They are public documents though. A call to the school board and/or the union local office should get you a copy.

Lou Arab
(Ethan's dad)

[Lou Arab]

Well big congratulations to the auton families.

Perhaps Rachel and I left BC a little too soon. :)

Can anyone tell us how this decision impacts funding levels? The BC government is funding therapy at about $20K per year, here in Alberta, Ethan's program is worth roughly $70k. I think its great that kids over the age of six may now get treatment, but will they get full funding, or roughly one third, as is the current practice?

Lou Arab
arab@shaw.ca

[Lou Arab]

My son is becoming increasingly sensitive to various noises. He runs out of the kitchen when we start the microwave, and becomes completely hysterical if we run the vacuum cleaner. Other noises lead him to cover his ears with his hands.

He has been in an ABA program since December, and making improvements in other areas.

Here is my question. I have never heard much of an explanation, from an ABA perspective, on sensory sensitivities. Nor have I really heard any approach taken to address this, again except from non-ABA approaches I don't find particularly credible.

I've tried raising this with my son's consultant, and I will really push it next time I see her, but what have other parents/teams done? Is there anything that can be done?

Lou

[Lou Arab]

Here is the response from Richard Stewart, MLA for Coquitlam-Maillardville. I hope my three year old son enjoys his tax cut.

Lou Arab
Ethan's Dad

—————

Dear Ms. Notley,

I want to thank you for sending me a copy of your letter to Ministers Clark and Hogg.

You wrote: "Tax breaks are not more important. Anyone who says they are is immoral. . . . . Are tax cuts worth my son's life? His future? . . . Your "new era" is nothing short of immoral. If you allow it to continue unchecked, so too are both of you."

I understand your anger and concern for the funding of MCFD programs. However, your son needs those tax cuts as much as my children. We need those tax cuts so that our economy will start to grow, so that we'll be able to afford the programs we cannot afford today.

Before the tax cuts, which we promised prior to the election, BC had among the highest taxes in North America. The economy in this province was among the worst on the continent, and the tax cuts were needed to start to turn our economy around. I don't think the tax cuts were big enough, quite frankly, but please don't think that our economy could improve without them, or that we could afford any of our social programs without a strong economy. We must cut taxes today, so that we will have an economy strong enough to support the programs we want to deliver for British Columbians. And today, we can't afford them.

Prior to the tax cut, we asked an independent Fiscal Review Panel to examine the province's fiscal situation. They advised us (and this was without the tax cut!) that the taxpayers of this province were facing a structural deficit of $3.8 billion by 2003-04. That means that, if we didn't change the way government was working, the government would continue to borrow from our children every year in an unsustainable way. The panel said the structural deficit must be immediately addressed in two ways: measures to control spending, and measures to stimulate economic growth.

It's certainly OK to talk about the tax cuts, but they are not in any way the reason why we must bring this government's spending under control. No, we have to reign in spending because BC's government spending is out of control.

I read your letter with a great deal of care, and I want to assure you that none of us ran for office hoping to cut government programs. On the contrary, it would be much easier to not cut anything. However, we can't sustain the current level of government spending, so we must — for everyone's sake — trim it.

Of course, there are programs that are very important to individuals, and some of them will suffer from cuts. I wish it weren't so, but the difficult decisions that haven't been made in BC for the past decade must now be made.

I know that all of us are trying to minimize the effects of the cuts we must make, but we also know that there will be pain.

I thank you once again for writing, and I will continue to work to protect these important programs.

Yours truly,

Richard Stewart, MLA
Coquitlam-Maillardville

[Lou Arab]

Dear FEAT Members,

My wife wrote an excellent letter to Gordon Hogg and Christy Clark, with copies to all the MLAs and the media. I want to share it here. In another posting, I will post the unbelieveable response from one Liberal MLA.

Lou Arab (Ethan's Dad)

—————-

I am the mother of a beautiful blonde three year old boy. I want you to imagine yourself , going through what I have gone through in the last two and a half years.

You wake up every morning and hug your six month old baby. You marvel at his beauty. You make plans for his future. You bask in his smile. You take your baby to a place with one or two other children the same age. You stand back and smile as they crawl around and over eachother, exploring, playing. He looks back at you with a smile, just to check that you're still there. You're so proud. A few months later, it's his first birthday party. Your baby's beauty has increased tenfold. You didn't think it was possible. Two of the other babies there are walking. They laugh and look at eachother. A third one, not quite walking, declares "mama!" and crawls toward her mother. Your baby stares into space, lost in thought. The birthday cake arrives. Your baby desolves into frightened tears. The cake is taken away. You try to interest your baby in the other children. The tears increase. A bad day you think to yourself. You feel your throat tighten. Six months later. Still no words from your child. He's just started to walk. You've been to see your family doctor. "Everyone develops at their own pace" you're told. You demand an appointment with another doctor. An eyebrow is raised. You're told to come back in another six months. A speech therapist tells you that your baby is "a little behind". You go back to your doctor. You demand a referral, and then another. You are desperate. Finally after six months of telling you that "there's nothing to worry about", suddenly the collective opinion changes. You are told that you child is "probably autistic". You're forced to wait another six months to get the "formal" diagnosis. You need that so that you can get help for your child. You grieve. You cry. You don't sleep. Your beautiful child continues on, unsuspecting, in his world. You cry some more…alot more. Then you "get busy". Something must be done. You read everything you can find. You discover that something CAN be done. You hear that the new government promised treatment. The deputy premier, a new mother herself, personally made a public promise during the campaign. You thank God for your timing. You feel bad for those parents that came before you whose children were not able to get the treatment you've been promised. You wait. Two months, four months…the treatment gets put off again, and again. It will be coming soon you're told. Then you are told that "a 30% cut will be made to the budget". Tax breaks were more important. You look over at your beautiful child, just turned 3 years old. He looks up, he smiles. He returns to his odd little routine. He has no treatment.

Tax breaks are not more important. Anyone who says they are is immoral. They deserve to go through what we have gone through.

They probably won't. Only 1 in 160 are autistic. The odds are on your side Christy. Do you deserve to enjoy the benefits of those odds? If it were just you, I would not be so sure. But your child has done nothing wrong. So your baby deserves to be healthy.

Will both of you Ministers be proud of what you have accomplished? Will your cabinet be proud? How many people do you plan to hurt? How much treatment to you plan to deny? How many lives to you plan to ruin? Is there a point where it is all worth it? Are tax cuts worth my son's life? His future?

Your "new era" means that I actually have to ask these questions. Your "new era" is nothing short of immoral. If you allow it to continue unchecked, so too are both of you.

Rachel Notley

[Author]

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