[Barbara Rodrigues]

Hi:

Does anyone deal with a 'proABA' pediatrician in either Kelowna, Vernon or Kamloops. The ped we saw in Penticton doesn't seem to be practicing anymore and while if needed we will make the treck to Vancouver but hoping to find someone closer.

Thank you.

email at joe_rodrigues@telus.net

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi everyone:

Hopefully everyone got to hear Jean's interview with CBC radio. The radio has asked people to comment on how they feel about the court case, how they about the government appealing it and the parents continuing with it.

The email is kelowna@cbc.ca

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi:

For those of you in the Okanagan – 93.7FM will have the Jean Lewis interview – it will be on at 7:15 am I was told by the guy from CBC. As we all know Jean is a great speaker and I am looking forward to hearing her thoughts.

On another note, does anyone know roughly what kind of time line we are looking at before the Supreme Court of Canada hears the appeal?

Good luck to all involved in this huge battle – I pray that justice will be done and in the end the rights of all the autistic children in Canada will be won. Our hearts, prayers and thoughts are with all of you as you embark on this journey.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

You know there was a parent who challenged this is the courts in Alberta as they are saying the same thing over there : once a child reaches the age of 7 then it's the 'education' 'schools' problem. Well, the parent won the case as the judge stated it was not the 'educations' mandate.
The judge awarded the child full coverage of somewhere in the 40,000.00 in spite of the fact they were school age and the award was to go until her pediatrician said otherwise or until she was 18 years of age.

Plus there is also the point that there are going to be those children with autism who will not have the foundation skills yet to be 'warehoused' or the more appropriate word 'integrated' into the system and will require intensive one-to-one intervention past the magic age of 6 years old.

So I totally agree with you anonymous – the government is still ignoring our kids 'medical treatment' and getting away with it each passing day.

I wait with great anticipation to see what the Supreme Court of Canada decides. Then I guess we all have to decide how we should hold them accountable for what they have done to our children – to their futures. Because I am sure there has a been a great cost to all of our kids and our families and not just financially.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hello to everyone:

I came across a great editorial in last summer's ASAT newsletter and thought I would share it with the group. It is written from the United States. Although, to tell you the truth it inspired me and says so much about what is still needed here in Canada. I found it very powerful and hope that you will also.

Education? Health Care?

In some states, Medicaid and other health care programs will not fund science-based autism treatment because such services are allegedly really "education."
Let's explore that. If an adult has a stroke and loses the ability to talk, walk, use utensils, and care for himself, health insurance pays for intensive, competently-delivered rehabilitation that does not look much different from science-based interventions used for children with autism who have the same skill deficits. Are we suggesting the adult stroke victim should go back to college to learn these skills? Of course not. Yet some of our children with the medical diagnosis of autism are thrown only to the special education system for services.

Schools are not required to maximize a child's potential. Nor do they necessarily know how to do so, until they receive proper in-depth training. An emergency room physcian who has a child with autism sat at her child's Individualized Education Plan team meeting. She was seeking the documented 30-40 hours a week of science-based treatment for her son.

"That's optimal", the special ed professional said. "Therefore, we really only need to do 10-20 hours."

The physician, a professional trained to think competently under horrific stress, paused. Then she quietly said, "Let me tell you how I heard that. You come into my emergency room riddled with pain from a horrific accident. I should give you 10 milligrams of morphine to dull your pain while we help you, but I will only allow 5. – Which, by the way, will not stop the pain."

There's a lesson here. We just need to figure out what it is, and how to use it. One lesson may be that somewhere along the line we lost focus on the distinction between medically-necessary treatment for children with autism, and a 'free and appropriate education' for children with autism.

Medically-necessary treatment is calculated to help patients recover from illnesses and disorders. If recovery is not possible, the medical community seeks to maximize a patient's potential. The medical community evaluates its excellence, and ethics, based upon the patient's outcome.

In contrast, and according to many Medicaid manuals, education consists of academic services in those traditional subjects such as science, history, literature, foreign languages and mathematics. The education community evaluates its success in educating children with special needs based upon the child's progress – not outcome. This progress is measured with varying degrees of accuracy, and is determined to be of educational benefit within a very broad range of interpretation.

The health care community, including all forms of health insurance, should ensure that our children receive autism treatment calculated to achieve aggressive outcome objectives pursued for individuals with other other medical diagnoses. Education should supplement autism treatment, not substitute for it.

When treatment provisions are in place to maximize the outcome of the patient's diagnosis, then we can talk about excellence in education. We must also ensure coordination of services across educational and treatment domains, so that educational practices do not interfere with treatment.

Anything less does not serve our children.

Lora Perry, MS, Editor

[Barbara Rodrigues]

Hi:

This is a question for the in-home ABA therapists – do any of you work with one child for 5 shifts a week ( roughly a 3-4 hour shifts).

I am wondering if 5 shifts with one child is too much or not. I have had my girls do this to cover vacations, therapists that have quit/fired without notice but was wondering if on a full time basis it can work out.

Thank you. You may email me privately or to the list.

email @ joe_rodrigues@telus.net

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Graham & Everyone:

The first lawsuit by the group of families was actually supposed to try and get it to a class action. This was denied, I am unsure of the reasons but maybe someone else can elaborate. I think it had something to do with the disorder being a spectrum disorder and each child so different, although as I say I am not quite sure.

I also hear what you are saying about the IEII funding but what I was wondering is the Government being even more slimey than they have been already. Now bear with me here – I realize this is medically necessary funding – that it shouldn't be a mess of a little funding from this pot, a little from that, etc. BUT for those of us whose kids were unlucky enough to be 4 years old when the lawsuit was launched who had their funding cut back in 1998 due to the retaliation of Victoria for the lawsuit, who's kids then got cut when the lawsuit was won because oops! they were 6 years old and I guess no one can learn after that- well, we had to get creative in how and what funding was available in order to get a miserly amount of funds.

Okay, now that I have you all confuzed. Here's my point – kids with autism are entitled to certain supports be it either supported child care ( both parents work, the child needs daycare and with extra support needs is entitled to a one-to-one worker) that's a certain amount per month, then say the child is entitled to a youth care worker, a behavioral support worker, occupational therapist, etc. So there's money that can be taken and funneled to the parent for ABA therapy – granted it's not a lot but it's extra money. That is until this is won in the Supreme Court of Canada.

So now the Government comes in with this 'new' money the 500.00 per month right? It's supposed to be above the current monies. Yet, apparently, your child is no longer entitled to the above funds from supported childcare, support workers, etc. and is only entitled to the 500.00 a month.

What I am wondering is this only in our region or is it happening in others. What everyone needs to do is ask their social workers 'Is this all my child is entitled to?' because if thats the case then not only is the Government going against what the Courts ordered but they are actually even cutting our kids funding further than it has been already.

Barbara
Jeremy's Mom

[Barbara Rodrigues]

Hi Everyone:

Just wanted to ask a few questions and please feel free to respond anonymously as I am asking about funding. It has come to my attention that while the government said that they put in 11 million dollars in 'new money' for autism treatment that they are then not offering any of the funds that were available prior to the 'new' 500.00 a month that is coming out.

Example say you were getting some funds privately from other sources that your child was eligible for ie: supported child care, youth care worker, behavioral support – say that came to XX dollars per month. So you figure with the influx of the new monies you would get your XX dollars a month PLUS the 500.00 per month. (This situation is not about me as of yet but someone I know) Instead you are told by your social worker and her boss that no there is no longer any money from the other support services and you are only entitled to the 500.00 per month. Is this happening in other areas or just again in the beautiful Okanagan?

Didn't the courts say the government was supposed to fund this treatment. Now they look as though they are not really putting more money into autism but just cancelling program funds that our kids were eligible for. Is a lawsuit by each and everyone of us the only answer until the Supreme Court of Canada hears the case?

Thoughts from anyone else?

Barbara
Jeremy's Mom

[Barbara Rodrigues]

To the parent wanting the info on the alarm.

I don't know if you can buy the alarms in B.C. but one can be ordered through Starchild Labs in California. It's called the 'Sleepdry alarm' The number to call is 408-662-2659. They don't have a web site.

If you need more info please contact me privately at joe_rodrigues@telus.net

Good luck.

Barbara

[Barbara Rodrigues]

Hi Everyone:

I think that we have to remember that FEAT is a success because of the work/the efforts put forth by many many parents in many areas. Everyone who has contributed in each way needs to be appreciated. The parents like Linda Cucek who have worked so hard to get media attention and keep the focus on the age discrimination and the broken promises of the politicians does need to be acknowledged. But ultimately, none of us are in this because we want 'thanks' – we are doing this because we want things to change to be better not just for our own autistic children but for every autistic child.

Many parents bring many valuable gifts to the table and use them to help us all, whether it be getting public/media attention, writing our press releases/briefs, helping new parents, getting school boards to change their rules ( Michelle Weis picketed the Langley school board a few years ago in order that all autistic children could receive a full time aide rather than half time), whether it's the behind the scenes parents who lobby their MLA's, write letter writing campaigns, do petition drives or just help with funding information. There's all of those dozen or so families who helped bring this lawsuit/appeal to where it is by taking much needed funds from their own children's ABA programs and putting it towards making B.C. a better place for all your kids. Each and everyone is appreciated and is of value.

FEAT is the powerhouse it is today because of the collective efforts of each of these parents and all of you. We use a pay-it-forward attitude, so that each of us that is helped will help others in turn – doing what each of us is skilled at doing. This is what makes us strong, this is what makes us successful.

Remember we are not done yet and have more work to do. While we bask in the glory for the moment remember there are many things that still need change. The school system needs to drastically change how it deals with our kids, with our therapists, with our consultants. We need to make sure that ABA is going to be available and funds provided for it for our kids who are more severely affected and will require ABA for many more years to come, transistioning into adulthood and beyond.

Because really we are all doing this for the kids so that they will have a voice – a collection of powerful, creative, combined voices – that's what FEAT stands for.

Barbara
Jeremy's Mom

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