[Barbara Rodrigues]

Just thanking in advance everyone who goes out tomorrow for the protest. I am with you in spirit!

"Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has." – Margaret Mead.

and of course,

:It is science that guides us,
but love that inspires us and we will not fail our children: Catherine Maurice

Thank you everyone.

[Barbara Rodrigues]

Hi Tina:

I got my letter last week so maybe see if you get something this week or you could call the unit as suggested.

To answer your question in the meantime – it does state that the funding changes start in October but as your child's birthday comes up then you will be switched over. So if you son or daughter has a birthday in say January – you will still get direct funding until that time – the only difference will be if your child doesn't have a birthday til say June 2010 – and they are under 6 years of age then all kids under 6 who haven't been switched to invoice payment will be switched by April 1, 2010.

My HUGE concern is the fact that MCFD says it will take 30 days AFTER the invoice for the staff to be paid – I will never be able to keep staff this way. I also note from the "invoice" that I can see NO WAY this makes it any more "accountable" vs our direct funding and signed receipts, bank statements and names/addresses and service provided. Absolutely no way other than going back to 'service provided by useless untrained people that hence the 'service providers' where we don't have any 'choice' like we use to have to deal with and fight before. This seems like the start of a BIG step backwards.

Barbara Rodrigues

[Barbara Rodrigues]

Very good letter Tony – really says it all and points to the very real future we all may be facing and sadly brings back rotten memories of that time so long ago. Thanks for sharing that.

Barbara Rodrigues

[Barbara Rodrigues]

Hi:

Just a suggestion when you write a letter to the Minister of MCFD – I would also cc it to the Premier and your MLA – it only takes a few seconds more and I found the cc's to be helpful and be sure you read the above by Sabrina on dealing with Government and keeping a paper trail of letters sent and responses or nonresponses gotten.

Also I think if we are heading for the loss of direct funding then we need to be sure of accountability on the Government's part in paying our staff in a timely manner – that would be within 2 weeks of their dates of employment – ie: If my staff works Sept 1=15 I want them paid on the 30th of September not 2 months later! I think for most of us – our consultants/SLPs they can more afford to wait (not ideal but they usually are running a business and used to this) but to those of us for paying our 'therapists' many of whom are students or using this job to 'survive' – it would not be practical to expect them to wait 2 months for their paycheques. I think this point needs to be addressed and stressed as we will not be able to keep staff for therapist positions if they must wait months for their cheques. I think the MCFD needs to put in a more streamlined payment system if they expect to take away direct funding (where you can fax in your staffing hours on their set end of pay period ie: the 15th/30th so they are paid on the 30th/15th respectively) again unless they regionalize this – I can't see it working – which again is going to cost WAY more money than direct funding – I think they already have the Autism Funding Unit overworked as it is let alone when they add further demands – it's going to be a bloody nightmare.

As someone who walked a picket line for direct payment many years ago – this is a hard battle – but not one that can't be won but unfortunately not an easy one and one that is going to be hard to get sympathy from the public on. In my case it was different as the Government wanted to supply me with THEIR useless/untrained staff rather than allowing me to hire/keep my own and were actually willing to pay more funds for those unqualified workers than giving me direct funding. So the public could understand that and supported me. In this venue – it's a bit different so it's harder to try and explain the compications of this to the public but again not impossible. I think the main point is that it's going to cost the Government money in administration costs – a lot of money. But if this is something that is 'set in stone' then you need to demand that your staff are paid as you would have paid them – on time on the set dates. Otherwise – well how long would you stay with an employer who paid you 2 months behind??

But yes, very disconcerting these new developments.

Barbara Rodrigues

[Barbara Rodrigues]

Hi Andrew:

Thanks for the posting. I totally agree with you – I was outraged by the remark "we do not know the effective treatments…." WHAT????? <sigh> Unbelievable.

Reading your second email – I am also mystified how someone can say that if the child didn't recover then ABA didn't work! What????? Okay – my son has not recovered -not even close – BUT without the use of ABA he would no longer be at home -he would still be in diapers – he wouldn't be able to use the computer -to read – to go on outings – to tell us what he wants to eat/drink/etc. – to dress himself – I could go on on. Yes, he is still severely affected by his autism but ABA has given him and us a life – he can do things independantly – while puberty has been hard – I can't imagine without the use of ABA what it would be like – Actually yes I can – and I would no longer be able to deal with him at home and he would be in some home somewhere -drugged up and drooling ……UGH! Sorry for the rant but it just appalls me that these people can't/won't support the science! IF ABA recovers children great – but it also provides those that don't recover with skills and a life that they would never have without ABA. Again don't get me wrong – I am all for research and would be the first one in line for the 'magic pill to rid my son of his autism' but don't discount the treatment that we have or say it doesn't work.

Anyway, thanks for keeping us updated.
Barbara

[Barbara Rodrigues]

HI Mandana:

You have the option of keeping your child back for 1 year. Was he supposed to attend Kindergarten this year? If so – I assume you held him back for a year from this. Next year you can hold him back again but I think you need to register him as 'homeschooled'. I don't think they are worried about you keeping him out of school as much as your son's funding- what will change is you will not be able to get the funding that you may receive for preschool supports because the MCFD or CLBC is only alloted so much money for each child and up to each age then when they hit 'school age' it is up to the Education Ministry/School to provide that support. This would include OT/SLP and if he is given an aide in preschool now which would become an aide in school -this all becomes the responsibility (such as it is) of the school. So it's not a matter if you 'can do it' it's more a matter 'can you afford to lose those supports?' It all comes down to funding unfortunately.

Barbara

[Barbara Rodrigues]

Hi Andrew:

Thanks for keeping us updated out here what's happening. It really disgusts me. Our kids can't even get a bloody 'day' – no cost to the Government in this – they don't even get that much respect.

I am also concerned about Autism Speaks Canada giving that amount of money to that 'Dr'. I also went to their website and am not impressed with what/where the money is going. Did you read what Mottron is testing? Doesn't sound that helpful to our kids. Also I note that he/they call children/adults with autism 'autistics' -which is the Michelle Dawson club way of speaking. I also will not be donating to these guys.

Thanks again for the info/updates. We appreciate your time.

Barbara

[Barbara Rodrigues]

Ah, okay – here's my take on the NVSD thing (for what's it worth). For those of you who know – I am for inclusion if your child can handle it and thrives and learns and I am for a dedicated ABA school also if your kid can't- for my child I would LOVE a dedicated ABA school – one like Joanne Gerserner(sp) runs or Bridget Taylor's and I think Bobby Newman oversees one or two also. That would be my dream and if I win the Lotto I would open one.

Now do I think that's what the NVSD is going to do? No Way. It sounds ridiculous. I mean what's with our kids wanting to be around other autistic kids and needing that?"Another key component in an Autism Learning Environment is giving the children the opportunity to learn social skills with their peers thus allowing them to have true friends with similar interests. Having peers from the same group while also learning how to socialize with typical children gives children with autism the opportunity to have friends with similar challenges and the opportunity to be friends with other children. Kids with autism aren't like say putting kids with the same physical disablities or Down's Syndrome together – our kids don't say 'oh, look another autistic kid – let's be buddies'. Let's face it – school districts aren't equipped or don't have the knowledge to open up a well run dedicated school(although this is just a room). I think we all every right to be very concerned about what North Van is doing. It sounds like a warehouse room – let's put all the autistic kids together and then hey – we won't have to have the one-on-ones,etc. I think parents should ask to see HOW they plan to bring these kids back into the classroom – what their plans for teaching are – how many aides per child – what are they using for accountablility -how data will be taken – what happens if these kids that are now in inclusion are yanked into a segregated classroom? How's that affect their self esteem? What about behaviors? What happens when a kid with maybe some behaviors acts out and is thrown into a classroom with more severe behavioral kids and picks up these behaviors. (my son can't handle outbursts and actually will react and act out more in the presence of another child's tantrum – I had a friend who's child became self injurious around tantrumming kids). And why aren't we working on getting the teacher's/aides to help decrease these behaviors. I know a lot of teacher's are wonderful but quite a few would rather not have THAT kid in their class.

Thing is I think we do need/require more choice for our kids especially those of us with more severe kids who cannot function in the 'typical classroom' but unfortunately the school system is not the one to set it up as their main goal is about saving money (in my opinion). I think we should have options – inclusion being priority one and homeschooling ABA with the school supporting what your child would cost if enrolled and eventually well run ABA schools – that know how to deal with behaviors/integrating kids/teaching autistic kids specifically -again with Victoria just sending the money directly to those schools. We need to go forward not backward and I think what NVSD is proposing is backward. Plus they only mention one room – all those kids in one room with autism – oh, not good – our kids don't do well like that. It will be a mess. And I think Jean is right – if it saves money and parent's don't fight it – it will be implemented elsewhere quickly.

Again I don't think this is a war between inclusion/noninclusion – we all want what's best for our kids that's why we are here. Just because my son can't manage in a classroom and your's can doesn't mean I don't want you to have that opportunity just as I hope you would support my right to teach my child in the best way/enviroment for him. I just don't think the NVSD's idea is the way to do that.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Michelle:

We saw a neurologist at Children's with Jeremy -I can't remember his name though – I think he was head of the neuro department though – I quite liked him not the greatest bedside manner but really, really knew his stuff – was instrumental in helping me deal with the meds and how to increase them (not the typical cookie cutter way that all drs. told me) but how to do it for Jeremy. I was so against meds and the bloody side effects but this dr. was the most understanding. For meds there are so many new ones around now and each works great for different types of seizures,etc. so I think it's important to have a dr. you trust and can really talk to when dealing with this especially as our kids can't communicate side effects (other than those wonderful behaviors) as well as a NT kid.

Take care.

Barbara

[Barbara Rodrigues]

Hi Tony:

Thanks for posting the updates very good to know. Are you guys sending out the question to every riding or should we be sending them out in our own ridings? I am in Stockwell Day's riding and well we know what his answer is.

Barbara

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