[FEAT BC Admin]

This area is for discussions in general topics.

Topic

[Nancy Walton]

I just reread my post and realized my last sentence does not apply to some parents as the individualized funding is limited to children under 7 (and thus cannot "continue"). However, I feel that the new board will fight for Indiv. funding for all children. So if you WANT choices in treatment sign up with ASBC today. This is one of our best avenues to fight for funding.

Nancy

[Nancy Walton]

I just reread my post and realized my last sentence does not apply to some parents as the individualized funding is limited to children under 7 (and thus cannot "continue"). However, I feel that the new board will fight for Indiv. funding for all children. So if you WANT choices in treatment sign up with ASBC today. This is one of our best avenues to fight for funding.

Nancy

[Nancy Walton]

I was at the ASBC extraordinary meeting and what I noticed was a large number of government service provider employees. Many of these employees were asked to join in order get a majority to overthrow the current board. Luckily they were not successful or the ASBC would be in the hands of service providers and we would likely eventually lose our individualized funding. As it is, the new board remains and the ASBC is in the hands of parents.

It is very important we keep it this way. I ask that ALL PARENTS sign up with the ASBC today. Phone them up and put your membership on credit card. The number is (604) 434 0880 or toll free 1-888-437 0880. Students are only $5 to sign up (I think).

This will be the easiest thing you can do to ensure that your choices in autism treatment continues.

Nancy, Casey's mom

[Deleted User]

This was from one the ABA mailing lists I am currently on. I know some may disagree with MMR links to Autism, however this article is interesting. Read below.

Fri 9 Aug 2002 3:05am (UK)
New Research Suggests Autism Link to MMR

By John von Radowitz, Science Correspondent, PA News

Campaigners were calling for more research to be conducted following new
evidence from the United States suggesting a link between measles, mumps and
rubella vaccine (MMR) and autism.

Scientists at Utah State University in Logan have found a strong association
between the vaccine and an autoimmune reaction thought to play a role in
autism.

David Potter, head of information and policy at the National Autistic
Society, said: “The NAS would be keen to see further independent research to
replicate these findings, which might provide a way forward in understanding
and treating the condition.”

Keith Lovett, of Autism Independent UK, said: “Parents have been suspecting
this for many years now but research was needed in the area to back it up or
put it to bed.

“It’s certainly not going to go away until it’s done properly. Proper trials
are needed. Supposed research has been done by the Government but there are
different weights of research as you know.

“This research has to be replicated by other researchers to get the full
weight behind it. We have to sit and wait a little while longer so people can
back it all up with more evidence.”

The team led by Dr Vijendra Singh analysed blood samples from 125 autistic
children and 92 children who did not have the developmental disorder.

The researchers found a “significant increase” in the level of MMR
antibodies in the autistic children.

Part of the measles component of the vaccine caused an unusual anti-measles
response in 75 of the autistic children, but not in the normal children.

More than 90% of the autistic samples which showed an immune response to MMR
were also positive for antibodies thought to be involved in autism.

These antibodies attack the brain by targeting the basic building blocks of
myelin, the insulating sheath that covers nerve fibres.

Dr Singh has suggested that this autoimmune response may be the root cause of
autism.

The US scientists, who report their findings in the latest issue of the
Journal of Biomedical Science, concluded: “Stemming from this evidence, we
suggest that an inappropriate antibody response to MMR, specifically the
measles component thereof, might be related to pathogenesis of autism.”

Dr Singh has published previous work indicating a link between MMR and
autism. He has argued for years that autism can be traced to an autoimmune
reaction centred on the brain.

David Potter of the National Autistic Society said: “This current research
offers a plausible explanation of underlying pathophysiology in some children
with autism.

“Although the National Autistic Society has yet to see the full paper it
welcomes such studies into the underlying pathophysiology in these children.”

The new study will fuel more controversy over MMR fears, which have been
blamed for downturns in the number of children being vaccinated.

MMR vaccine uptake in the UK for 16 month-old children dropped from 76.2% to
70.1% between December and March, but then rose to 72% in April.

Immunisation for 24-month-old children fell from 85.8% to 84.4% over the same
winter period and then increased to 85.9%.

The Public Health Laboratory Service said the dips were probably due to
“intense adverse publicity” about MMR over the Christmas and New Year period.

The PHLS, Department of Health and British Medical Association have all
consistently driven home the message that the vaccine is safe.

Public health experts have warned that low uptake of MMR could increase the
risk of measles outbreaks.

But the pressure group Jabs (justice, awareness and basic support), which
believes parents are right to be worried about MMR, said the new research
strengthened its case.

Jonathan Harris, the group’s West Midlands spokesman, said: “The evidence is
building up tremendously. I really feel there’s a very, very strong case now
for suspending MMR use while further investigations are carried out.

“We have said all along that it affects only a certain subset of children,
causing a new type of autism in children whose immune systems have not really
been tested fully.”

He stressed that Jabs was not anti-MMR but wanted parents to be allowed to
choose single rather than multiple vaccines.

“At the moment parents only have the choice of MMR or nothing,” he said. “We
think that’s irresponsible of the Department of Health.”

Keith Lovett, of Autism Independent UK, said the Government had “bullied”
parents into using the MMR vaccine, making it harder for them to get access
to single vaccine.

“Certainly the Government has gone out of its way to make sure you can’t get
singles. You have to have inoculation of the triple or nothing at all.

“There are lots of questions which now come into play, like: ‘What are they
(the Government) hiding behind?, is the Government in hot water if there is
an association?, will there be claims against the Government?.”

Both the BMA and the Department of Health said yesterday they could not
comment before allowing experts to look at the full research paper.

[Deleted User]

I have been working as an ABA Therapist for a few months, and my husband may be getting transfered to the Okanagan. I was wondering if anyone had any general information on the potential for work in the region (Kelowna, Vernon, Salmon Arm, Kamloops). Nothing is certain yet, but if you are a therapist, or a family in the area, I would love to know whether I could possibly look forward to continuing this rewarding work in the future! Thanks so much!

[Sabrina Freeman]

Dear FEATBC members,

Although not directly related to the mandate of this board, I also feel compelled to post a note regarding the recent ASBC General Meeting. I understand that despite an unprecedented motion brought by an insurgent group of disaffected ASBC members to overturn the recently elected ASBC board, the current board was given a vote of confidence in a vote of close to 200 ASBC members on Aug 8th (an unprecedented turnout in recent memory).

Several years ago, I was a member of the ASBC. I let the membership lapse because I could not support an organization that was controlled by government, cut private deals with an inner circle and wouldn’t work collaboratively with FEATBC regarding something so fundamentally just and necessary as distributing the Checklist for Autism in Toddlers (CHAT) to every General Practitioner and Pediatrician in the province so that every child could be diagnosed as early as possible, ideally by 18 months of age. The ASBC essentially said ‘No’ by endless foot dragging. FEATBC eventually went it alone with what little resources we had. The CHAT mailing finally went out to 3500 B.C. physicians despite ASBC’s de facto rejection of this important project.

However, today it appears as if the nature of the ASBC has changed to be more inclusive and representative of the wide and more diverse cross-section of families affected by autism in B.C. Therefore, I now believe that the time has come to rejoin a more representative and democratic ASBC. Such an honest organization will likely now fight for necessary initiatives such as individualized funding in support of choices in autism treatment. At this juncture in the evolution of autism advocacy in B.C., I now strongly encourage all the 100’s of members of this discussion group and the over 1000 individual FEAT members at large to join as individual members of the ASBC to ensure your voice is heard (604-434-0880). ASBC is a very important advocacy group that can help advise and guide government in formulation of the policies that affect your children – including individualized funding policies.

Despite all the controversy of the so-called ASBC vs. FEAT debate, I still firmly believe that the two organizations can be complementary rather than adversarial and that a more inclusive and representative ASBC will serve the needs of all British Columbians with Autism — if you all get involved to ensure that happens.

Sabrina

[Maureen St. Cyr]

For "anonymous" and anyone else who couldn't be there last night:

The ASBC extraordinary general meeting was quite well attended — perhaps 200 voting members of the Society. The motion to remove the current board of directors was put to the floor, discussion followed, and upon voting by secret ballot, failed to pass.

The membership of ASBC has spoken, the current board of ASBC is confirmed. This is good news, and at last we can get on with the arduous job of fighting for the rights of people with autism, instead of fighting amongst ourselves.

After talking to many of the people who signed the petition to remove the board, it became clear to me that there is a clear communications problem between the board of ASBC and the membership at large. I have some ideas for how to make that better so that members never again have to be led to worries of the kind of grave nature which were passed around in recent weeks. The members of ASBC should be able to contact the board to raise their concerns and have them answered as promptly as humanly possible in a volunteer organization (the board is volunteer, only the staff are paid). I will be raising my ideas for discussion with the Communications Committee at our next meeting, and with the board in general. There are also some ideas for improving communication which have already been discussed by the board — some raised by board members and some by staff — and I had hoped to have at least some of them implemented by now. Really, this message should be posted on the ASBC Chat Board — but we don't have one yet. Hopefully we can get that going soon, since it has been raised as a desired facility by staff, board and membership alike.

I will raise my biggest concern right now in this forum, since it is appropos to the membership of both FEAT and ASBC. There is still a perception among many that FEAT and ASBC can also be spelled as THEM and US. That needs to change, and it is one of the principal reasons I joined the board a year and a quarter ago. Three of the people involved in trying to bring down the board last night were FEAT members. Many of the people who supported the current board last night were NOT FEAT members. If nothing else, that should be ample evidence that there is no THEM and US, only people concerned with helping families affected by autism.

I personally encourage you all — if you have not joined ASBC yet, do so. If you are already members, get involved. We have a committee structure set up and in place. Any member is welcome to join it and contribute. Let's stop fighting among ourselves and apply the same drive to fighting together against those who would deny the rights of our loved ones, regardless of their age, regardless of what memberships they hold.

To those who voted for the board last night, thank you. I hereby guarantee you I will fight first last and always for the rights of our kids, young and old. To those who voted against the board last night, thank you for caring enough about ASBC to be there and express your views and needs.

Last but not least, as the chair of the communications committee of ASBC, I feel a personal liability for the clear lack of communication between the board and membership. Therefore I will take the following step on my own to begin making it up to you all — Any ASBC member or concerned parent who wishes to bring a concern to the board of directors may contact me personally at araskin@uniserve.com. I will do my best to answer any message received promptly and personally, and I will bring your concerns up with the entire board at the next directors meeting.

Thank you all, and happy summer,

Avery Raskin
Vice-President
ASBC

[Deleted User]

In response to Michelle's posting:
Unfortunately, I wasn't able to attend last night's meeting; can someone who did attend, please post an update on the ASBC 'special' meeting/proceedings/results, and perhaps explain the implications of last night's events? Thanks!

[Deleted User]

A reminder to all to attend the ASBC meeting tonight.

FEAT members have been accused of being radical, single minded and out to destroy the ASBC. We have also been accused of not representing the many parents of children with autism who are members of the ASBC. These accusations sicken and anger me.

Our situation today is unique. Today families of young children with autism are receiving funding to provide scientifically proven treatment – due to the actions of the Auton et al decision as well as the hardwork of parents and various organiziations – more and more parents are choosing ABA, these parents MUST be represented as well.

The "friends of the autism society" argue that the current board does not represent the makeup of parents of children an adults with autism. I would strongly disagree. The current board is split, if my memory serves me correct, of an equal number of feat and non-feat parents. To me this sounds like an excellent spread of representation. The new board is by no means "dominated" by one special interest group.

every single member of that board is a parent of a child with autism and whether we are providing aba, whether we attend FEAT meetings, is irrelevant. WE all want what is best for our children and for the children who are yet to come and very importantly for the people our children will become.

I would argue that the previous board was DOMINATED by a group of parents who were not of a mindset that represented my family or the hundreds, perhaps thousands of families who believe strongly in ABA and individualized funding. We believe so strongly because it works and because we feel that everyone MUST have the access to this treatment IF THEY SO CHOOSE!

It sickens me that one special interest group has chosen to try to overturn this board without giving allowing these members a chance to prove their dedication to the families of B.C.

I will end there before I completely express my disgust. I hope to see all of you there.

Michelle

[Deleted User]

Hi Everyone, We are very new at all of this and are looking for some guidence on how to interview and hire therapists. Where do you generally hold your interviews? Is your child present for the first interview? What kinds of questions do you ask and what types of responses are you looking for? I've never interviewed or hired anyone so I am a little nervous about the whole process. Any advice would be greatly appreciated. Also, are there any questions I shouldn't be asking?

Thanks.

[Author]

Replies