[FEAT BC Admin]

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[Deleted User]

What? Not a new low? Well this isn't a high point that is for sure.
If you leave the lower Mainland and head out into the hinterlands of our province you will find no shortage of Doctors who don't know squat about treating autism and i mean every Doctor within many communities. There are also many children who are younger or older than 6 who got ripped off, they were underdiagnosed, and are going without any treatment in their life. New Community Living Authorities in small communities will have a stranglehold on some autism funds (yes pay that untrained worker $15- union wages to take the kid to the beach or the mall and when the dough runs out see ya kid wait till next year). Parents don't know what ABA is and no one is telling them within their communities. There are school Districts whose cutting edge autism service is sensory integration. Still.
This might not be a new low but for some kids it never got any better, they never got and are not getting a chance at treatment. Change may be happening in the Lower Mainland because of the hard work of many parents and advocates but in small town BC if you are a young child with Autism chances are your funds are spent on maintaining the status quo. Unfortunately ignorant communities make for ignorant parents also.
Sorry for the rant but i see no shortage of kids, suffering from autism, being robbed of any opportunity to recover in our province still. For the kids who have no opportunity, no voice, and no advocate, lets not get too smug just yet.

[Deleted User]

I am the parent in Alberta who won the Court Order for the Director of Child Welfare to fund IBI if in the opinion of the Director, based on all the evidence, it is required until the age of 18 years.

Well the Director has now back-peddled and has been providing funds based on need but only until August 31st. After that who knows as families continue to hang in limbo. Many families don't even know that Alberta Children's Services is now supposedly going to be providing services to children up until the age of 18 years. The irony of this is that Alberta Children's Services has always been providing treatment, if you put your child in an institution.

In my case, the government is using me as an example to scare families off as the Director continues to dish out a little here and there and I am in the process of putting my Affidavit together to throw the Director into contempt.

Families here continue to strive to "change" this. The Court has given the Minister two weeks to provide another parent with a Consent Order or the judge will order the medical therapy. Another parent is in court tomorrow with 4 other parents with dates forthcoming.

Medical therapy is not something that we should be grateful to receive nor should we have to prove, and in court none the less, that our children are entitled to live a life of dignity and reach their fullest potential.

It is unacceptable to not fund medical therapy in its entirety. The Honourable Sullivan made it quite clear that you do not stop an operation half way through. He also called the limited IBI policy and the actions of the Minister as indingeous and deserving of reproach.

You can access my court written reasons on the FEAT of AB website.

Lorraine Stratkotter

[Deleted User]

I am the parent in Alberta who won the Court Order for the Director of Child Welfare to fund IBI if in the opinion of the Director, based on all the evidence, it is required until the age of 18 years.

Well the Director has now back-peddled and has been providing funds based on need but only until August 31st. After that who knows as families continue to hang in limbo. Many families don't even know that Alberta Children's Services is now supposedly going to be providing services to children up until the age of 18 years. The irony of this is that Alberta Children's Services has always been providing treatment, if you put your child in an institution.

In my case, the government is using me as an example to scare families off as the Director continues to dish out a little here and there and I am in the process of putting my Affidavit together to throw the Director into contempt.

Families here continue to strive to "change" this. The Court has given the Minister two weeks to provide another parent with a Consent Order or the judge will order the medical therapy. Another parent is in court tomorrow with 4 other parents with dates forthcoming.

Medical therapy is not something that we should be grateful to receive nor should we have to prove, and in court none the less, that our children are entitled to live a life of dignity and reach their fullest potential.

It is unacceptable to not fund medical therapy in its entirety. The Honourable Sullivan made it quite clear that you do not stop an operation half way through. He also called the limited IBI policy and the actions of the Minister as indingeous and deserving of reproach.

You can access my court written reasons on the FEAT of AB website.

Lorraine Stratkotter

[Debra Antifaev]

Wow!
Thanks everyone for the postings and friendly 'phone calls. I am sorry to be so needy and whiney but I honestly did not think that my "Tina the Elephant" post would create such a stir. I was simply musing on the irony of the situation and wishing my son could get that kind of coverage on TV. I was wishing that the public could be more disgusted about the treatment of our children. I am absolutely thrilled that Tina will be going to some nice home in the States!

Lucky elephant……

Deb

[Deleted User]

Dear Anon,
I am writing this in regards to the last post on this chat board.
I also agree that the path forward cannot be paved with misinformation and exaggeration, but it is indisputable that our children are discriminated against..
Please remember that the government did not suggest that we get an IEII program for our children – others before us fought for that. I, and I am sure everyone else is very thankful for the $1667.00 we receive every month – even though it is only half of the cost our fine government is supposed to be paying. That would be half the treatment that they would be giving my child. If your child had cancer would you settle and or be content with half the treatment? In the words of Michael Lewis “If our children had cancer we would not be having this conversation”. I for one am not satisfied with just “SOMETHING”, especially when some families have had to put their homes up for sale to pay for their child and sometimes childrens medical treatment.
Those that went before us did not get us where we are so far by “working for improvements”. They fought for them in court at a great financial burden.
You said that things are slowly but surely improving and that families have more viable options to pursue, but you failed to list these things.
You also mentioned that we should probably be a tad more patient …in regards to what is before the courts, yes, we will have to sit and wait… but in regards to anything else, we all know that waiting for change has not worked and that it has only hurt our childrens success.
I for one will not “accept what I cannot change” because it’s wrong. This is something that can and will be changed because it is a fundamental right of all autistic children.
Until then, I will for fight for the rights of my child and when this fine government pays it’s bills, I will give credit where it is due.

[Barbara Rodrigues]

Hey Deb:

I read your posts both current and past – I should have posted to the first but just didn't get the time.

Your post touched me because I have been there, felt the same way about the publicity, outcry – when I was picketing the news gave me some coverage locally but boy, when a dog was abused up here in the Okanagan that story went not only provincial but national. I had the same feelings that you had (not that we both don't love animals) just that our kids weren't given as high a priority as an animal.

I hope you will continue to post both good news and bad. You have made huge contributions to the fight and spent your valuable time speaking out and helping to make the lives of the 'newbie' families easier and better – some of whom will never know the heartache, anguish or frustration that those who have had to fight the system for so many years have had to endure. Sure things are better but not enough – that's why the battle continues in court.

You know my son is more severely affected by his autism, we are not rich and we are not going to be on the 'recovery' route. So we have to fight to ensure that my son will get continued treatment for as long as he may need it. For while he may never be as advanced as Dave's (Mr. P's dad) son or even integrate into the school – ABA has helped him in many ways – for without ABA I have no doubt that he would be in a institution and his ears would be damaged from smashing them with his hands. And each and every year (with treatment) he shows great improvement and more foundation skills – so who knows?

So while there may be different variations in how ABA works – I think we can all agree that it's what our kids require, what they deserve and anything less should and will remain unacceptable.

ps: for the rude comments – my girlfriend suggested a t-shirt that says

LIVE IT
THEN JUDGE

Take Care

Barbara
Jeremy's Mom

[Deleted User]

Deb –
I am truly sorry if you felt offended or upset by the opinions I expressed. As I tried to state, they were not directed personally at you or anyone else. I neither stated nor suggested that anyone was not entitled to their feelings. On the contrary, I agree with you that this is a very convenient and appropriate forum for people to express their feelings, and look for support. Some very excellent and relevant discussions have resulted from it. I am not at all angry at anyone, just concerned about the effects of misinformation. That is what I said.

I do not like posting anonymously; in fact I feel horrible every time I feel the need to do so. But I find it preferable to suffering derision from those who may disagree with my opinion, or who are offended by it even though I have tried to be very careful to avoid causing offence. Unfortunately, faceless communication can be easily misinterpreted.

I too am a parent of an autistic child. I not only know how you feel, I feel the same way: sad, angry, frustrated, alone. To deny the feelings of you or anyone else would be to deny my own feelings. I'd rather cut off my arm. We may differ in our opinions, but we are all in this together.

– Anon again

[Debra Antifaev]

To Anon,

On a day when I was feeling teary and sad because
A. our funding was cut and
B. people made some very unkind comments about my son while we were shopping (not the last I will hear, I am sure)
I turned to the chat to muse that sometimes I become very weary from fighting constantly for something that should now be my child's right.
We DO continue to fight and we DO try to be part of the solution and their are times we turn to this parent support CHAT when we are feeling the most vunerable for what it is supposed to offer…support.
I am sorry that my heart felt sadness angered anon. I could join the many that will not post to this CHAT any more but I feel that defeats the purpose. There is much work still to do and I will "chin up", take direction and continue the fight for our children as I have for the past three and a half years.
All I ask is that, if you are going to tell a weary parent that they are not entitled to their feelings, just please identify yourself.
I only have your word that you are not a "Government" person and many have tried in the past to upset parents on this CHAT under the "cloak of anonimity".
For just the wee bit I have done, as least I deserve that….

Deb
Ben's mom

[David Bridges]

Amen to the last post by anonymous! I heartily agree.

DB

[Deleted User]

I am writing this because I am concerned about a sentiment that is becoming very prevalent on this chat board, and is propagated by comments that I feel are negatively misleading. Comments I am sure do not represent the sentiments of all. Here is a quote, singled out only because it is recent and not because I'm trying to single out the author:

"It seems the discrimination of our Autistic hildren has hit a new low and has crossed all boundaries."

I am in no way affiliated with any government or political party, but there is one thing I do know. Until our current provincial government started the IEII program a year ago — with all its flaws and imperfections — there was NOTHING for ABA funding. Now there is SOMETHING. That something is not enough for some, but it is better than nothing. For my own part I can plainly say this: It has saved my son.

This does of course not mean that we should accept what is given and quietly go away. Of course not; we must continue working for improvements. But it is important that we give credit where it is due. Our current situation is better than it was 18 months ago (even for school-age children, although barely). When people make comments like "we've hit a new low" when in fact things are slowly but surely improving — such changes are never fast enough for those waiting for them — it does nothing to assist the cause. On the contrary I believe such comments, because they are emotional but not factual, actually undermine the credibility of those fighting to make real gains. In the same way that it is so painful to listen to politicians after they have fallen from grace and been voted out, no matter how valid their current point may be: because they have lost their credibility.

All parents of autistic children face a trying and frustrating journey, some more than others. It is an emotional burden, and for many an unbearable financial one. We all agree that we would like more assistance, and we realize that in order to get it we need to fight for it.

But I do not believe that the path forward can be paved with misinformation or exaggeration. The truth is cruel enough that it needs no embellishment.

Today there is more funding for autism treatment, doctors are better informed about autism, people in general know more about autism, and families have more viable options to pursue than ever before. Of course we all would like more of all of the above, and we should be willing to work very hard to achieve it, as so many have done before us. And it's extremely frustrating. There are obstacles in every struggle; sometimes you are stopped, sometimes you see your efforts eroded in front of your eyes. If it's important enough you don't ever give up.

I am a non-Christian but I do believe there is great wisdom in the world's religions. I encourage you to consider this (paraphrased), and pray or meditate on it as is your custom:

"May God grant me the strength to change what I can,
The serenity to accept what I cannot,
And the wisdom to know the difference."

[Author]

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