[David and Barbara McLeod]

Holiday Wishes to all of our FEAT friends.
Here's to a momentous 2005!

David and I have included an introductory letter and copy of the petition in all 100+ Christmas cards we sent to family, friends and work colleagues.

I am including a copy here in case it is of use to any of you. I have freely "borrowed" from posts to date.

¡§Holy Cow! They ruled against our kids!¡¨

Dear Family and Friends,

Our family, along with many others, suffered a devastating loss in the Supreme Court of Canada last month. After almost seven years of legal action and two overwhelming wins in the BC Supreme Court and the BC Court of Appeals, the Supreme Court, incomprehensibly decided against our request for equal treatment under Medicare. What a cruel irony that Tommy Douglas, the father of Medicare, should have been voted the Greatest Canadian that same month!
Our contention was that our kids (children with autism) were being discriminated against under Section 15(1) of the Charter of Rights and Freedoms. If our children had physical disabilities, their treatment would be covered under Health Services. Because they have a mental disability, they have been relegated to Social Services. Our kids are diagnosed by health professionals; there is an effective treatment with more than 30 years of scientific research behind it that exists and is making an enormous difference in the lives of autistic children. Currently only those families with the ability to pay have access to this treatment.
There are so many more details that I would like to share with you to counter the simplistic, short-sighted, half-truths espoused by government officials. If you are interested or would like more details, please visit http://www.canadaautism.com or http://www.featbc.org. I have pasted a couple of articles to the back of this note as examples.
We need your help! The Supreme Court has given the decision back to the provincial government to decide whether and how worthy our children are of treatment dollars. As that is where we started in 1997, we are not optimistic. Our only chance now is to garner public support for our cause. Tell your provincial and federal politicians that autistic children need and deserve treatment dollars. Treatment now will allow many to live a normal life, many others to work and contribute to society and save significant money that will, otherwise, go to paying for custodial care for a lifetime.
What can you do?
„« Have your neighbours, friends, family, co-workers sign the attached petition. Mail it to your MP. (address at the bottom of the petition)
„« Tell your MLA and the Premier that you support treatment for children with autism. (See sample letters at http://www.canadautism.com )
„« Find out more about autism treatment at http://www.featbc.org.
„« Keep the issue alive as we head into the next provincial election.

¡§One hundred years from now, it will not matter what my bank account was, the sort of house I lived in, or the kind of car I drove…but the world may be different because I was important in the life of a child.¡¨

The back page included the following (Thanks Jenn Ralph and Jean Lewis.

FEAT of BC Mission Statement

Families for Early Autism Treatment of B.C. is dedicated to bringing the most effective type of autism treatment available to the children of British Columbia (Lovaas-type Applied Behaviour Analysis ¡V A.B.A.). A central part of our mission is to make Lovaas-type A.B.A. autism treatment universally accessible to all B.C. children aflicted with autism spectrum disorders.

¡§Once it seemed like a life sentence. Now we know that that sentence can often be commuted, even lifted. Now we know there is hope. As long as we intervene early enought, intensively enough, we can rescue many children from the solitary confinement of autism…Where are other parents to turn ¡V parents without the resources to hire trained therapists. Somehow, we have to find the money to help children with autism in those crucial preschool years. If we don¡¦t, the cost to all of us of caring for an untreated adult will be far greater, reaching into the millions. The cost in terms of human suffering is not to be measured.¡¨
David Suzuki

B.C. parents lose autism lawsuit

I was stunned, sickened and devastated when the SCC handed down their cowardly ruling on autism funding. They hid behind what seems to be a technicality ¡V that autism is presently-and wrongly-not considered a core medical issue, and succumbed to the unchallenged fear- mongering about
fiscal doom-and-gloom of the AG¡¦s. To treat autism as only a learning disability (and not a core medical condition requiring treatment) is akin to saying a cleft lip is a skin problem. If the SCC actually read the previous rulings,
which it appears they did not with all of the inaccuracies in their 22 page judgment, they would know that this was the last chance for autistic kids to get the medical treatment they need and rightly deserve as equal citizens in this country. They are the guardians of the Charter, and they failed one of the most vulnerable and disadvantaged groups in this country. Where is the accountability? The province now has free reign to continue with their shameful history of conflicts of interest, lies, broken promises, and systemically influencing education and social services with misinformation and insufficient funding for unproven, useless treatments. It is like ¡§groundhog day¡¨, once again, for parents of autistic children. These children have essentially been stomped on, muddied, and thrown aside. I hope they realize that this decision just ruined any future hopes at productive and happy lives for thousands of deserving, and able if treated, children with autism. I am truly now embarrassed to be Canadian.
Jennifer Ralph, Richmond, BC

*****************************
What a disappointing decision, and one which undoubtedly will have very serious social and economic impact in Canada if legislators there do not wake up. Couple the epidemic like increase in the incidence of autism with ineffective treatment, and essentially you have created the "perfect storm" for lifelong dependency and care, certainly for a significant percentage of these children. Hopefully, Canadian legislators will see this looming threat…..it's either pay now or cry greater fiscal tears later…..Jim Mulick's "cost benefit analysis" should be brought to the attention of every single legislator in Canada to show that even on a purely economic "bean counting" analysis, and wholly apart from the human wreckage, it is fiscal suicide for Canada to proceed this way.
Gary Mayerson

"The only thing necessary for the triumph of evil is for good men to do nothing."
– Edmund Burke

Barbara

[David and Barbara McLeod]

Nancy,

Beautifully said.

Barbara

[David and Barbara McLeod]

Hi Everyone,

If you would like to download a copy of the Court of Appeal judgment, it can be accessed at
http://www.courts.gov.bc.ca/jdb-txt/ca/02/05/2002BCCA0538.htm

YES!!!

[David and Barbara McLeod]

Hi Cheryl,

I attempted to send this message previously but it seems to have disappeared in cyberspace. Apologies if it shows up twice.

What is the Autism Education Society? AES is "a charitable nonprofit organization established by parents of children with autism and concerned professionals. The mandate of AES is to provide education to all professionals, paraprofessionals and care-givers who touch the lives of our children."

"…it is a priority of the AES to establish a permanent, academic program at [a local university] to train Canadian based consultants and autism treatment professionals…"

Contributions to AES are tax deductible. To receive more information and/or a brochure, call (604)513-7232.

As far as the pool goes, I just rent the whole pool for a birthday party (1 hr) the same way anyone else does. We set up a welcome table in the lobby where invitees sign in, sign a large card for Alex and put donations in an AES box if they wish. If they wish to receive a tax receipt, they sign a sheet that I leave on the table near the box.

Hope that answers your questions. I'll keep my fingers crossed that the post goes this time!

Barbara

[David and Barbara McLeod]

Hi Everyone,

Just wanted to share a happy story for our family. Our son just turned 9 years old. We have been involved in an ABA program for 6 years now. Our son is far from recovered but continues to make progress and we are proud of his hard work and continued growth.

After a number of years of planning just the right birthday party with peers and all the hoopla that goes along with it and everyone of them ending in an emotional let down because Alex didn't care about peers or presents (although he has learned to LOVE birthday cake!), we decided to take a totally different focus. Thus our happy story.

Alex loves to swim so we decided to turn his birthday into an event that would fulfill a number of goals. Alex would have fun at his birthday party, his birthday would involve school and neighbourhood children in a fun-filled event that they would associate with him, we would raise the awareness of autism in our community and we would raise some money for the Autism Education Society.

Last weekend was our fourth annual Happy Birthday, Alex swim. We rented the local pool for one hour and invited all of Alex's classmates and families as well as neighbourhood friends and families and friends and families of our older son. In all between 50 – 60 people attended. The lifeguards at the pool organized a number of activities from pool mats and boats to the rope swing and a huge inflated toy called the snake. Family members from ages 2 to adult had a great time together. Cupcakes and snacks rounded out the event with lots of laughs and supportive comments by kids and adults alike. And we raised $370 for A.E.S!

Our goals have been accomplished. We know this will continue to be an annual event for our family. Just wanted to share a positive story.

The McLeods – A, B, C & D

[David and Barbara McLeod]

Hi Lisa,

The government has put out an RFP – Request for Proposal – for an organization to manage / administer an Individualized Funding model to serve children with autism under six. It went up on the MCF web site on Monday. The news broadcast that talked about it said they hope to have it up and running by June. What I heard was that it is for $5,000,000 and is intended to serve 200 children. Hmmmm. Is it the funding you've been waiting for? It appears to be another sum of money being made available to some families.

Barbara McLeod

[David and Barbara McLeod]

Hi Everyone,

Just wanted to send along some kudos to Dale Matheson Carr-Hilton Chartered Accountants (Vancouver) who last weekend donated all proceeds from their annual charity golf tournament to the Autism Education Society.

September is our son's birthday. We annually hold a swim event at the local aquatic centre and invite all of the children from his class as well as siblings and our other son's friends to Alex's birthday event. In lieu of gifts, we take donations to AES. It is a great event. The added bonus is the awareness of autism and the support our child receives at both school and in the community.

We are very happy to have supported AES through both the birthday and the golf tournament this year.

Barbara

[David and Barbara McLeod]

Hi Everyone,

Just wanted to add a big THANK YOU to FEAT for organizing yet another training session for our families on October 6. Our team is really looking forward to this presentation and the "new" topics we will discuss in the break out sessions. We, in particular, we focus on the two sessions entitled "Progression of Peer Play and the Integration into a Social Skills Group" and "Social Skills in a natural environment". Our new team members will profit by the "Pre-teaching for the Youngest Children" to get them up to speed on beginning to work with our kids and I'm really looking forward to the session on "Team Management and Training". We really look forward to time with others who face the same challenges as we do – to know we are not in this alone and to get that boost we all need from time to time that says "We can do this!" See you there!

Barbara McLeod
Alex's Mom

[David and Barbara McLeod]

Re: The ASBC vs FEAT position on autism treatment

I would like to add my thoughts to the discussion that has been on the list this past week.

It is unfortunate that our quest for funding for treatment for our children now includes open animosity and polarisation of two groups who have, we would assume, as their main raison d’etre, better treatment and increased successes for all of our children with autism. What a woeful waste of emotion and energy! Lord knows we need all of both for the job at hand.

Most of us, as FEAT parents, started our autism journey by approaching ASBC. We were advised of the services available (or not available) to us through Government Social Services, invited to support group meetings and given a list of what was in the library. We have moved quietly but surely away from ASBC because the government services we were offered (when they were available) were woefully inadequate and our children needed treatment not support. FEAT offered us the comprehensive information we needed to get our children onto the ABA programs that are making a difference in our children’s learning and lives – scientific information, therapist training workshops, lists of resources, parent education meetings, lists of ABA service providers, … and at no membership fee and token registration costs. We know the urgency of effective treatment NOW. With the purpose of securing funding for effective treatment and access to this treatment regardless of ability to pay, some member families of FEAT pursued litigation to return autism treatment to Health Services and to seek individual funding for ABA treatment programs. Is it surprising that our numbers continue to grow and our loyalties deepen? Or that our frustration with ASBC flares when it becomes clear that parents are not even told about ABA as an option, are discouraged from considering ABA (expense, too hard to manage…) and that the organisation that is deemed to represent our children stands up in court on the side of government vs families seeking financial support for home programs?

For most of us, we have simply put ASBC “on extinction”, and moved on. We have been “reinforced” by the progress our children have shown and continue to show. We have a sense of shared purpose and hope with fellow FEAT parents and we wish to have a voice at the table in government decision making discussions that impact treatment options for our children. We DO believe that there IS only one truly effective treatment for autism and that belief is based on research, data and results. We know that ALL children can benefit from this treatment and that many can be normalized. We know our children can go to school without the difficult behaviours that make them “unwanted” in many schools. We fundamentally support parents rights to choose treatment options and we expect, in return, that our choice will be honoured. We do not believe that our children’s best interests are served, nor that scarce resources are best spent, by giving government contracts to groups to offer monopoly treatment services. ( Hence, we do not wish to work with government to make the current EIBI program work.) Individual funding will allow parents to spend treatment dollars with the service provider of their choice. Those who produce results will have large clientele; those who do not, will not. We include the current EIBI program in that. We do not expect to be handed dollars without accountability. We are not worried about accountability or program evaluation for ABA programs – receipts and results are built in to our programs. Hopefully the current EIBI program parents will be offered the same (receipts and results). We are not satisfied with funding to age six only; schools do not offer adequate support or treatment for our children and autism does not disappear nor do our children stop learning on their seventh birthday. We have to step out of the current whirlpool of inadequate resources and start our children swimming upstream.

FEAT parents have been forced to branch out on our own and to leave the ASBC doing what they do. While we made no demands on them to pursue our program option, all was peaceful in the land of autism. Now that we wish to have access to the dollars that some of our families have generated through litigation, it seems that the war is on. When we express our opposition to the government designed program that once again is an “our choice or no choice” option, we are painted as ill-mannered discontents and chided to behave, be grateful and “work with them”. I don’t think so. I, personally, am happy to let ASBC do that. I am relieved that this government knows that ASBC is not the only autism organisation that represents parents in this province. If ASBC truly wishes to work for all children with autism, let them recognise and support the fact that FEAT also represents parents and that our voice should also be heard. Let them stop seeing themselves as “the parents” and treating us as “children” in this debate. We do not need their counsel nor their scolding. We will not be silenced nor bullied into “walking the straight and narrow”. Our war is with autism not with ASBC.

[David and Barbara McLeod]

Hi Everyone,

Just passing on a message I received from a fellow FEAT member this am. For very interesting reading on government thinking about autism treatment and "things to come", log on to http://www.legis.gov.bc.ca/ and read the Hansard entry for Thursday, August 9 am. Go to page 377 Estimates: Ministry of Children and Family Development and the input of the Honorables Gordon Hogg and Linda Reid and their responses to questions put forward by MLAs D. Jarvis and Ida Chong on behalf of their constituents. (Sooo, they do take our questions to Victoria!). The discussion ranges from about 10:25 through to 11:00. It appears our whispers in the wilderness are being detected on the radar screen. We still have a ways to go to be really heard.

Keep up the good fight.

Barbara McLeod

[Author]

Posts