[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Mike & Jean]

I have been reading the recent exchanges regarding the ASBC/FEAT of BC debate and am compelled to add my comments.

My name is Jean Lewis. I have been a Director of FEAT of BC for the last six years and a member of the ASBC for three years. I am a litigant in the Auton case and sit on the legal steering committee in Auton. My husband is Michael Lewis, who was elected by acclamation as president of the ASBC at its AGM on June 1, 2002. Both of us, along with many others have volunteered thousands of hours of time, energy and expertise to seek justice for all people effected with autism.

Apparently our work and our values and our achievements are what the former executive director of the ASBC and two of her colleagues characterize as “extreme and radical” in their bid to overthrow the newly elected board. I will leave it to you to decide who is extreme and radical.

The Mission of FEAT of BC

Dr. Sabrina Freeman outlined our two primary goals, which are making publicly-funded, science-based autism treatment available, and advocating for early diagnosis.
Additionally, we organize public information in the form of workshops, seminars and monthly parent discussion groups, all aimed at providing the most current information on ABA treatment programs. Advocacy is another of our key mandates, primarily for funding and school issues.

Our mandates are straightforward and will evolve as the state of autism treatment evolves in BC. We are not on anyone’s payroll – our only stakeholders are people affected with autism and their families.

Our goals and the goals of the ASBC should be complimentary.

Individualized Funding.

I address these comments to all of you who are receiving individualized funding.

You are receiving it only because of FEAT of BC’s efforts.
The Auton case was about individualized funding. The litigants requested individualized funding be paid directly to families so they could use the ABA provider of their choice. The government’s made-for-court response was the very flawed, very expensive “EIBI” program. Individualized funding came as a result of FEAT of BC’s effective advocacy, which was the creation of the CIAT program (Choices In Autism Treatment). You also need to understand that the previous board and senior staff of the ASBC actively opposed individualized funding. Their view of ‘individualized funding’ was for government to allocate money directly to a select number of service providers (the vast majority of whom lack the appropriate credentials), leaving parents no choice in who would provide services. Needless to say, this model is not what the more than 200 families doing Lovaas ABA programs in BC interprets or expects as individualized funding.

Those of you receiving individualized funding would not have it today if it had been left up to the prior regime at the ASBC.

My advice to you is: Get involved and ensure your desire for true individualized funding is guaranteed and advocated for in current and future ASBC policy.

The Auton case is in the BC Court of Appeal. The “age” question is part of our cross-appeal. Obviously treatment needs to continue or begin when a physician prescribes, it regardless of a person’s age. Our children don’t turn into pumpkins at age six. Many need to continue with treatment for varying lengths of time. Some don’t start treatment until after six; some don’t start until much older.

The current state of Autism “care” in BC.

What about the future? As stated, many children require treatment for prolonged periods – when they are no longer children or adolescents, but adults. What does BC offer adolescents or adults? Are the group homes applying “best practices” techniques? What are they? Are there legitimate teaching homes available? What are the models currently used for supportive living? Are they current? Are they staffed by properly credentialed people or highly-paid babysitters? What about job coaching? Who’s advocating for “best practices” for these people? What about the school system? Is mediocre treatment OK because it’s the status quo?
These questions are very difficult but the answers are even more difficult. BC is still in the 1950’s in all areas of autism service delivery.

There is an enormous amount of work to do by all of us if we want our loved ones to enjoy lives of dignity. The status quo in BC for all people affected with autism is bleak and unacceptable.
FEAT of BC has never accepted the status quo — Because of that, kids under seven have funding today. FEAT of BC will continue to rock the status quo until funding is provided to all who require it, regardless of their age.

As for the newly elected ASBC Board, I applaud the membership for electing such a group of high-calibre people. I know some of them and have also had the honor of working with some. They are professional, hard-working and ethical people who have moved mountains to help their own children and are willing to do the same for others. They all possess qualities, talents and skills the ASBC so desperately needs – vision, passion, and know-how. The stakeholders of the ASBC are truly fortunate to have these people on the board because they also know who the true “stakeholders” are – the people and their families.

My hope is the ASBC membership stands behind the new board and lets them get on with the enormous tasks at hand, to ensure better futures for all our children.

Good luck to you all.

[Melodie Pilloud]

Hello All, well it looks like on Friday the 26th of this month we will be given the diagnosis of autism for our son Ty. So my question is what do we do from here? What is the first step we take? Please… I need help. Thank you very much, Melodie (Ty's mom) m_pilloud@yahoo.ca

[David & Lori DiSanto]

Hi all,

I thought that I'd also relay my experience with the ASBC.

Our son was diagnosed 5 months ago, we've been doing an ABA program now for 3 months or so. Our path was a little different than most in that we already knew what we wanted to do before we got in contact with any organization. When the SLP told us there was a problem (and we wormed it out of her that she thought his behaviour was consistent with autism) we immediately started researching. We read every book in the SFU library (where they still have 3 copies of "The Empty Fortress!!") regarding childhood autism. As a result, within a couple days we knew of Lovaas' results and that we wanted to do an ABA program for our son.

Now we walked into the ASBC and became members. We got their information package, which to us had useful information in it. The most well-laid out and useful information in there was navigating the government services and hooking up with MCFD. However, the real help for us came through their library. We went into the library and said "We have a newly diagnosed child and are interested in starting an ABA program. What do you have for us?". Well we got a tremendously good reception in the library, from both librarians. I found them to be helpful, knowledgable, and directed us to a lot of very good ABA literature. We got Maurice's book through them, we got the ME book through them, and countless others with great ideas and resources. They helped a great deal in our research of ABA.

In our experience, we've really only had much contact with ASBC through the library but have been helped and encouraged through them. The library has been a terrific resource to us.

So, we've had a good experience (as I said we've only really accessed the library and not been involved with any of the "big picture" issues). However, keep in mind that we went in knowing what we wanted to do and asking for resources on it. The big problem arises when people don't know what they should do, and want someone to tell them. This wasn't our experience so I can't comment on it. I just wanted to say that in our case, having gone in knowing what we wanted, the response from ASBC was positive.

Also, I can't say enough about FEATofBC. We are presently getting $20,000 per year. Without this money we would not be able to conduct an ABA program (which has been incredibly effective so far). Someone from FEATofBC told us who to talk to at MCFD and we very quickly received our government funding. (That was before IF and the guy who we spoke to has now left MCFD so don't bother asking me who it was). FEATofBC people have had a terrific impact in the present status of our program in terms of funding, access to therapists, and answering questions about ABA.

In our case, we've navigated the issues of diagnosis, goverment funding, resources, and ABA extremely quickly and easily. Unfortunately we are in the minority in this respect. I think the reason why it went quickly was that we started out educated (thanks D&J). However, there is no reason why our experience can't be the norm.

As a side note: It's no wonder everyone is so passionate about the position they've taken. Changing position is tough. Imagine you are a parent who declined to do ABA when presented with the opportunity. For you to decide that ABA is the best therapy for children you have to admit that you had a chance to help your child, but you blew it (yes I know that you can start ABA at any age but the research shows that the biggest gains happen in the early years). That's a tough pill to swallow.
So, may I suggest that while people are pursuing pro-ABA philosophies we should all be gracious to others. One can be soft in dealing with others without having to soften ones stance.

Anways, that's my 2 cents worth.

Thanking God for ABA,
Dave

[Jenny Obando]

Hello everyone, I have been reading with great interest, everything regarding ASBC and Feat and I felt the need to tell my experience with both groups.
When my son was first diagnosed a year ago, my first instinct was to call ASBC, they told me about their meetings in my community, and sent me a huge parent package that by the way said absolutely nothing about ABA. As if my son's diagnosis was not overwhelming enough they sent me this huge package.
My husband and I attended a meeting where I meet a parent who insisted I call her. She had, I now know, invaluable information. She is a member of feat and when I call her after contacting ASBC, and desperately asking them what else I could do for my son who was 3 at the time, they asked me if I had a social worker, which I did, they asked if we were receiving OT and SLT, wich we were.A whole two hours a month. ASBC went on to tell me that I should feel proud of myself that I was doing everything there was to do for my son. Relax. After all my son was on a 1 1/2 year waiting list for sunny hill, and the Laurel Group, the lady at ASBC, said I was doing everything possible.
That was when I called this parent I had meet at ASBC meeting who for some reason was very interested in talking to me. I call her and she put me in contact with Sabrina and Feat, and thanks to them is that since last October my son has been in an ABA program. Thanks M K.
So now that I told my story here is my point, Autism society was the firt place I though of going when my son was diagnosed,I wonder how many families have done just that, and have not been as lucky as I was to find a parent that truly cared. This parent was not been paid or did not gain anything by giving all the info she did, if anything I was taking away time that she could have spend with her family, the same goes for Sabrina who spend two hours on the phone with my husband and I to answer the billions of questions we had.

The truth is ASBC is not doing what they should, their first priority should be the children, their well being and to provide support for the families. Where ASBC has been usefull for me is as a library, that's it, even when I was looking for volunteers to come and work with my son doing ABA, ASBC said that their funding was cut off in that department and they could not help.
But to put all this packages for the government they sure seem to have the funds and man power to do it.

I received a call from a parent of a now 12year old boy who was diagnosed when he was 3. She saw my advertising in the paper looking for ABA therapist . She phoned because she is at her wits end and wanted to know about this "new" therapy called ABA.

After I explained to her about ABA, and that it was not so knew as she tough. She told me urgentely:"you should contact ASBC and MFCF, and let them know".
It infuriates me to no end to know that her son, and God only knows how many more could have been helped, this is where this two entities have failed miserably.

Autism society should be ashamed of the poor job they have been doing, and they should be held acountable for not disclosing vital information for families. I know ABA does not work the same in all children, and not all children will loose their diagnosis, but not all children that received chemotherapy will survive either, that doesn't meant they go without.

Autism society should feel privileged to have parents that are willing to come and be a part of a board and society that has a lot of work and a lot of soul searching to do. Instead they seem afraid of change and new blood, or perphaps afraid of parents that their one and only concerns are the children, and not the hand outs the government has .

I truly hope that with this new members things would start to improve. Where all parents of autistic children will feel welcome at Autism society meetings and not outcast because you are doing an ABA program, which is the welcome I got after starting my son's ABA program.
They went as far as shutting the door in my face literally, but that is another story.

As I often say, I am the parent that does not goes away, and will not take no for an answer.
Keep up the fight for ALL our children.

Jenny( Tristen's mom)

[Jenny Obando]

Hello everyone, I have been reading with great interest, everything regarding ASBC and Feat and I felt the need to tell my experience with both groups.
When my son was first diagnosed a year ago, my first instinct was to call ASBC, they told me about their meetings in my community, and sent me a huge parent package that by the way said absolutely nothing about ABA. As if my son's diagnosis was not overwhelming enough they sent me this huge package.
My husband and I attended a meeting where I meet a parent who insisted I call her. She had, I now know, invaluable information. She is a member of feat and when I call her after contacting ASBC, and desperately asking them what else I could do for my son who was 3 at the time, they asked me if I had a social worker, which I did, they asked if we were receiving OT and SLT, wich we were.A whole two hours a month. ASBC went on to tell me that I should feel proud of myself that I was doing everything there was to do for my son. Relax. After all my son was on a 1 1/2 year waiting list for sunny hill, and the Laurel Group, the lady at ASBC, said I was doing everything possible.
That was when I called this parent I had meet at ASBC meeting who for some reason was very interested in talking to me. I call her and she put me in contact with Sabrina and Feat, and thanks to them is that since last October my son has been in an ABA program. Thanks M K.
So now that I told my story here is my point, Autism society was the firt place I though of going when my son was diagnosed,I wonder how many families have done just that, and have not been as lucky as I was to find a parent that truly cared. This parent was not been paid or did not gain anything by giving all the info she did, if anything I was taking away time that she could have spend with her family, the same goes for Sabrina who spend two hours on the phone with my husband and I to answer the billions of questions we had.

The truth is ASBC is not doing what they should, their first priority should be the children, their well being and to provide support for the families. Where ASBC has been usefull for me is as a library, that's it, even when I was looking for volunteers to come and work with my son doing ABA, ASBC said that their funding was cut off in that department and they could not help.
But to put all this packages for the government they sure seem to have the funds and man power to do it.

I received a call from a parent of a now 12year old boy who was diagnosed when he was 3. She saw my advertising in the paper looking for ABA therapist . She phoned because she is at her wits end and wanted to know about this "new" therapy called ABA.

After I explained to her about ABA, and that it was not so knew as she tough. She told me urgentely:"you should contact ASBC and MFCF, and let them know".
It infuriates me to no end to know that her son, and God only knows how many more could have been helped, this is where this two entities have failed miserably.

Autism society should be ashamed of the poor job they have been doing, and they should be held acountable for not disclosing vital information for families. I know ABA does not work the same in all children, and not all children will loose their diagnosis, but not all children that received chemotherapy will survive either, that doesn't meant they go without.

Autism society should feel privileged to have parents that are willing to come and be a part of a board and society that has a lot of work and a lot of soul searching to do. Instead they seem afraid of change and new blood, or perphaps afraid of parents that their one and only concerns are the children, and not the hand outs the government has .

I truly hope that with this new members things would start to improve. Where all parents of autistic children will feel welcome at Autism society meetings and not outcast because you are doing an ABA program, which is the welcome I got after starting my son's ABA program.
They went as far as shutting the door in my face literally, but that is another story.

As I said often say, I am the parent that does not goes away, and will not take no for an answer.
Keep up the fight for ALL our children.

Jenny( Tristen's mom)

[Linda Cucek]

Norah, you are great I agree totally with what you are saying.

James mom Linda

[Deleted User]

FOR IMMEDIATE RELEASE

Papal Knight’s Great Grandson faces Tragedy Amidst Canada’s Celebration of
Youth

TORONTO, Ontario – July 23, 2002 – Another ironical twist of fate for young Luke Burrows unfolds while Toronto anticipates the arrival of the Pope. Burrows is the great grandson of Sir John Leo Whitney who was bestowed the highest honor of the Roman Catholic Church. In 1957 Whitney was awarded Papal Decoration by the Vatican, his title Knight Commander of the Order of St. Gregory. At the time there were only 100 people in the world Knighted by the Vatican and Roman Catholic Church. Whitney contributed tirelessly to the Church throughout his life, and flew to Rome for a private audience with Pope John Paul the twenty-third.

Whitney’s granddaughter has been fighting for her son’s right to effective treatment for Autism, a neurological illness. In the imminent face of termination of her son’s treatment due to the extraordinary cost she points out, “ It is wonderful that we are welcoming the Pope in such a fantastic celebration of life and youth, it is just so tragic that thousands of our own Ontario children with Autism including my son will never get the opportunity that the future leaders of our world are celebrating this week. They will never be able to celebrate their youth, because their futures are being stolen from them by an arbitrary government policy, which cuts off effective Autism treatment at age six.”

Whitney’s son will have to stop his fight to reach his full potential at the end of July when their funds run out. His mother has raised almost ten thousand dollars to try to keep him in treatment, but sadly it falls short. “ I wish my son’s great grandfather were still with us today, I am confident the Church would recognize through one of my grand –dads Herculean efforts, that this vulnerable group of society needs their attention.
With mixed emotion of the day Whitney reads from the Bible;
Mark chapter 10 verse 14
“Jesus said unto them
Let the little children come to me,
And do not hinder them,
For the Kingdom of God belongs to such as these.”

For little Luke, perhaps a Miracle is needed for the Government of Ontario to remove the hindering barriers of beurocratic policy for him to one day stand with the Pope and celebrate his life and youth.

-30-

[Pete Stelmaschuk]

Has anyone ever had their child "stim" off their own name? I have asked the professionals and they don't have much to say. My son is repeating his name to himself over and over. It really makes him seem strange and otherwise he has no visable autistic mannerism (no big ones anyways).

Should I just try to ignore the behavior? Use his name less frequently? I know this board is not to replace consultants but I have always found that parents are far more knowledgable than the "professionals" (I hope this does not offend anyone).

Shelley
Zane's mom

[Linda Cucek]

I would like to say thank you to Sabrina Freeman, she always comes through! Also, I agree with Norah Whitney, in regards to the funding issue & Alex Barclay, and Pam Mihic, I wish their were more people out there that would truly see that playing God with someone elses life like Alex Barclay, said is so true and it is ignorance and discrimination, and it time we take a stand to advocate for our older children. One day the younger children will become older children and this stupid EIBI program will obstruct the opportunity for their recovery. I believe that Pam Mihic, has experienced that the ABA works for her son and the results are there so how can anyone dicriminate against older children with autism. I will fight for my son James, who is 18 years old; and he was promised by Premier Gordon Campbell, that James would get the treatment. I won't give up, I have a tape from his promise and a picture that proves he is not six years old like the Liberals would have people believe, James was as tall as Campbell in the picture, he was 14 years old when he was given the promise. WHY? Because I don't want any other parent in the next generation to go through the hell I have been through raising an autistic son without any supports until he was diagnosed at 13 years old as autistic, still I don't get the support I need for James, respite is babysitters they don't know how to do ABA Treatment, & James behavior is getting worse & sometimes very hard for me to manage and control, but does the Government care? NO, because they don't have to live with it. Its going to look pretty stupid if I get Fran Peek and his son Kim Peek (Rainman, Dustin Hoffman played part of)–and I don't have anyone supporting me for him lobbying Gordon Campbell, and telling how only ABA can make a difference and the Autism Society and FEAT BC have to become one and get along and support each other. Fran Peek, says in the states the Autism society's truly believe in the ABA treatment and are helping to see that the older autistic people don't end up institutionalized, & that we are at least 40 yrs. behind the time of whats happening, pretty scary isn't it! Its criminal the government discriminates against the older people, even prisoners get better treatment than our autistic children, they help the prisoners recover from their behavior. I think this is the most awful thing in regards to disagreement and non-belief and putting FEAT BC down because we believe that this is a truly proven factor according to Fran Peek. Thats why I wish people would please just support me in getting Fran and Kim here, is because they are coming to help James, yes! but all the children who are being discriminated against here in BC. And I feel it is the Autism Society's duty to help bring them here, Fran says their Autism Society's do this all the time, for different occassions. They don't want to charge anything for their talking to parents and helping us lobby the government, they just want their airfare from Salt Lake City Utah roundtrip and accomodations paid for and food.
Its time we talk the talk and walk the walk, instead of just talking the talk. Also, Minister Linda Reid, is bringing in Leading Autism Researchers to speak in Vancouver, only for the early childhood development, she is having this funded by the Laurel Group and Mainstream Association, which I find convenient that she once worked for the Laurel Group, and as you know the Laurel Group only gave James, ten hours out of a month a because of gas costing too much didn't want to pay travel expenses from their destination to mine, to help James. To me this is REAL discrimination towards our older kids. I am a proud mom of James and we will WIN!!

James Mom Linda Cucek

[Deleted User]

As a working parent with a child who won't get the current IEII program I share everyone's frustration. I agree that the government has no right to cut off the funding at age 6 or 7, and discriminate by saying our children needs to have a team assessment.

I want ABA for my child, and my child is high function but the cost are so high. I also feel that our government in the "health care" should handle the costs rather then the MCFD. I know we all agree on this one.

Ideally the Ministry of Health would take over as it is a doctor diagnosis, and it is deemed a medical disablity. Why in the world does our government allow people who have no medical training, background etc… fund our children? I know you have all fought for us, and want this same thing. This must change. ABA is medically neccessary, my child is very high function and deserves this treatment.

I also want to say one parent said it best in a previous post (unrealted topic) we are parents of children with autism, not abused kids. Shame on this government for not funding our children with MSP. What are we paying taxes for?

It is our parental right to decide if our child grows old with us or not, but I would much rather a better chance for all our children of a normal life rather then one of dependency. If the schools listened to the legal judgement they also would have ABA trained SEA'S. It amazes me that SEA'S in classrooms in this province have 8 week courses ONLY. We need these things to CHANGE. Thank you FEAT for allowing us to express ourselves.

Sabrina – Thank you! Without you or Jean and the other parents of Feat we would be all doomed.

Also, most parents I know in average working families cannot afford ABA and therefore this province affects more people then it serves. I am not against praising where praise is do, and I realize that income should have no bearing on medically neccessary treatment.

[Author]

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