[David and Barbara McLeod]

Hi Everyone,

I attended the Dr. Guralnick video-conference at the Courtenay site yesterday. His presentation was on setting up a Delivery Model to ensure effective early intervention within a jurisdiction. Dr. Guralnick was personable, straight forward and knowledgeable. His model is academic, seemingly well researched and comprehensive. While it focussed on all children at risk, he referred to autism throughout and, I believe, his messages were congruent with those FEAT would give – early diagnosis, programs based on best practice / research, individualized services, current and accurate information for families, essential support of families to address the family stressors that are engaged when a child has special needs etc. Sabrina, many of his comments could have been scripted by you. Too bad his energies could not have been focussed on autism and the current state of affairs in our province. As it is, each site was asked to respond to his model with ideas of what they were ready to do and could do "at this time" to advance such a model in their communities. The discussion at our site demonstrated the sense of powerlessness folks involved feel with respect to making any changes in coordinated services. The "not enough dollars" / "not enough people" manatra reigns.

The video conference enrolled 682 people at 21 sites and provided for questions to Dr. Guralnick throughout. While it was not appropriate to ask questions specific to autism during the presentation, I did manage to make a comment during the "early diagnosis" component. I expressed our discouragement / dismay at the dismal diagnosis experiences for families with autistic children. I told him that our organization had distributed copies of the CHAT to all GPs and Pediatricians in the province and that it could be used to identify children as early as 18 months. He concurred and made comment that waiting until children at 3 or 4 is much too late. Later in the presentation, a pediatrician who identified herself as, I believe, head of pediatrics at Children's returned to my comments and expressed interest and gratitude for that kind of information sharing and well as a similar sense of urgency in diagnosing and providing adequate treatment services to children with autism.

THere were many references to forthcoming increased funding for early intervention and to an advisory committee that had suggested and organized the video conference. Should we as a group be suggesting a province-wide video conference (also partially funded by health and education ministries)on autism? Perhaps Dr. Guralnick could get specific in his model to early intervention for our kids? Food for thought?

Barbara McLeod

[David and Barbara McLeod]

Hi Everyone

Just a correction to the date in Sabrina's message re: the video conference. It is actually happening on March 15. The 9th is the registration deadline.

Do we have the strength to attend!!

Barbara

[David and Barbara McLeod]

Hi everyone,

Does anyone have a taped copy of the CBC interview? or know how to get a transcript copy? My audio is not working!

Thanks,
Barbara

[David and Barbara McLeod]

Hi Barbara,

Our family has been involved with Dr. Mary Connolly at Children's. We would highly recommend her. If you have any specific questions, please feel free to e-mail us at dmcleod@island.net.

Good luck,

Barbara

[David and Barbara McLeod]

Hi Everyone,

We haven't used the list to search for therapists in the past as we are 'island folk' but thought we'd give it a try this time.

Our son is 7 years old and has been in a program since age 3 1/2. He attends school full days. We are looking for one or two therapists to add to our current team of four. We live at Qualicum Bay on Vancouver Island. If you know of anyone living in our area who would be "prefect" for the job, please pass this message on to them. We are looking for folks for late afternoon / early evenings and possibly one weekend day.

Our email address is dmcleod@island.net. Our phone number is (250)757-8566.

Barbara & David McLeod

[David and Barbara McLeod]

Hi Everyone,

Just a thank you to FEAT for the very worthwhile and upbeat presentation Friday night by WEAP. Their research, replicating the Lovaas study, and the positive results for parent-directed programs is very encouraging. The idea that we could have a local program training therapists under such competent people seems too good to be true. In the mean time the availability of another consultant firm is wonderful for our children.

WEAP left packages with some very succinct articles that every parent should have. Is it possible to post them here?

Remedy for families involved in the law suit will be discussed in court on Tuesday and Wednesday the 14th and 15th. Keep your fingers crossed that the government will finally be forced to do the right thing for our children.

[David and Barbara McLeod]

Hi Everyone,

CBC Victoria called today to ask me to be interviewed tomorrow am at 7:40 re: the Supreme Court Ruling, the government's appeal and Lovaas treatment. Wish me luck!!

Isaac, thanks for keeping us posted on all media pieces – Bill Good interviews,Maclean's etc. It is great to get all of this to share. Sabrina – thanks for your knowledge and commitment. You were so clear on the Bill Good show. He is a wonderful ally.

Folks, if you have not already done so, please consider calling your local media and telling them that you are an ABA family in their area that is effected and "not amused" by this government's lack of support and decision to appeal the Supreme Court judgement. Give them the internet site so they can review the judgement and a copy of the press releases, too.(Thanks, Avery – your commitment shines through) Give this judgement the personal face of your
child.

An idea to share. Our son Alex will be 7 on Sunday. We have rented the local pool for a swim party and are inviting the kids in kindergarten class from last year to the party. We want Alex to see them all again before the start of school. We have also invited our older son's friends to an "end of summer" swim at the same time. We have decided to go with a "no gifts, please" designation on the invitation and, instead, are having a donations to AES box in lieu of gifts. I sent along a copy of the AES brochure with the invitations. We feel this helps parents of kids in Alex's class understand autism better, understand our program a little and become aware of the goals of AES.

[David and Barbara McLeod]

Hi Everyone,

Congrats, Sabrina and Isaac on the article in the Langley Advance. That was a stunning photo of Miki!
I had been thinking that it would be a great thing to do to bring this provincial judgement "down home" with a local article featuring a "home town" child. I would encourage all FEAT parents on home programs to do just that. Give your local paper a call and tell them you are involved with an ABA program of the kind described in the judgement. Offer to do an interview complete with photos for their paper. Give them a copy of the press release and the judgement (or the site where they can review one).
Tell them the government should validate this judgement by moving forard with it. Tell the government that it should not appeal but should instead work to get funding in place for all families and save significant $ in the longrun. Tell them the pilot project is a humungous waste of $. Let's get 130 stories out around the province. Wouldn't that be great coverage!

Ciao,

Barbara

[David and Barbara McLeod]

Hi Everyone,
Just wanted to share the letter to the Editor I forwarded yesterday and to encourage all of you to do the same.
Letter to the Editor

Dear Sir,

I am writing in response to the recent BC Supreme Court decision calling on the government to fund treatment for children with autism through health care. I laud this judgement. It is a critical decision to the lives of so many children who to this point have been second class citizens in the eyes of our government. I am the parent of a six year old autistic son. If my son had been born with a physical handicap, his treatment would be covered under health services. Because he has a mental handicap, no treatment is provided for him. It is a statement of the government’s belief that there is no hope for these children. We know this is not true.

Our son Alex has been involved in a Lovaas ABA home program since January 1997. I can’t imagine what his life and, therefore, our lives would be like without this treatment program and its benefits. Because of this teaching technology, our son can dress himself, toilet independently, feed himself, and brush his teeth. He has learned to ride a bike, rollerblade, swim and do gymnastics. While his language is severely impaired, he is learning to read and using this skill to develop oral language skills. He has had a successful year in a regular kindergarten class with the support on an ABA trained aide. He is an affectionate, happy, easy-going little person. Because of this treatment methodology, he is continuing to learn and grow on a daily basis. We are among the lucky parents who have been able to find the dollars to pay for this program. There is now hope that all children with autism will have access to this treatment.

In the Sun editorial of July 31st, questions were raised about the costs of treating our children. Important information was missing from that editorial. Cost benefit analyses, available from a variety of sources and presented at the trial, confirm that the short term costs of early intervention result in significant cost savings to the system over the lifetime of care that is required for untreated individuals. In the "letter of the day" on August 1st, parents characterised Lovaas treatment as cruel, dated and based on a misunderstanding of the autistic child. Nothing could be further from the truth. This letter perpetuates the old myths about this treatment. It does not claim to cure all children. It is in fact an up to date, positive teaching methodology practiced world-wide, funded in many countries and other provinces of Canada that has resulted in the normalization of many children and significant gains for all others. The reality is that no other treatment option is scientifically based nor can make the same claims.

In my opinion, the current system is cruel to children and families living with autism. It is cruel to have families waiting for up to two years for diagnoses at the crucial time for best outcome treatment for their child. It is cruel not to provide them with current research that clearly outlines treatment options and their levels of efficacy. It is cruel to require them to put their children into custodial care either in day cares, preschools or respite situations in order to access funding. It is cruel to withhold information until they come up with the right questions about how to access what is available to them. It is cruel to spend limited dollars on a pilot project ( in excess of a million dollars) to research treatments when $15.00 US will buy a copy of the New York State Department of Health’s recent publication that will give them all the current information and research on that exact topic. It is cruel not to provide funding for a treatment that is proven to significantly improve the lives of children.

This judgement has exposed the inadequacies of support for autistic children. It debunks the myths about Lovaas-style ABA therapy, confirming its efficacy and declaring it to be medically necessary. It concurs that the cost benefits of early intensive intervention over a lifetime of custodial care are significant. It is time to get on with the remedy suggested by the court and to give our children hope to be contributing members of society and the opportunity to be tax payers themselves one day.

Barbara and David McLeod

6277 West Island Highway

Qualicum Beach, B.C.

(250) 757-8566

[David and Barbara McLeod]

Hi Everyone,

This is just a reminder of the workshop on June 10 in Parksville. Shelley Davis, MA, JD, a behavioural consultant from LEAP, San Francisco with present a workshop entitled Supporting Children with Autism at School – an ABA approach.

The workshop is for Teachers, Teaching Assistants, District Support Staff and Parents.

The session is sponsored by Qualicum School District and will be held at Springwood Middle School in Parksville from 9:30 – 3:30. Cost to non-district #69 participants is $25.00 payable at the workshop.

Register by calling Barbara McLeod (250)757-8566 or Anne Pearson at Winchelsea Elementary (250) 248-3012. For more information on the session please call Barbara McLeod.

Barbara McLeod
Alex's mom

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