[Deleted User]

VERY IMPORTANT NOTICE!!

F.E.A.T. of B.C. is sponsoring an A.B.A. workshop presented by W.E.A.P. (Wisconsin Early Autism Project) on Saturady, October 6, 2001 at Simon Fraser University.

The workshop will be greatly beneficial to:
-parents
-therapists
-potential therapists
-all school personnel
-anyone interested or involved in this or related fields

W.E.A.P. is opening a clinic in Vancouver in October – so this is an ideal opportunity to learn about A.B.A. from a bonafide and soon to be local service provider.

There will also be two local vendors who carry a wide variety of A.B.A. program supplies at the workshop. Come and check them out!

To register via the internet go to http://www.featbc.org, go the 'events' to download a registration form. Fax your completed registration form to FEAT FAX at 604-534-9527.

For more information call the FEAT office at 604-534-6956.

Please note that since the change to 10 digit dialling the FEAT switchboard at 573-7233 is no longer in service. All calls should be directed to 604-534-6956

Thanks

[Deleted User]

To all. I posted the wrong phone number, it is 604 487 0048.

Alex Barclay

[Deleted User]

To all.

In the interest of achieving government endorsement of individual funding for intensive ABA treatment. I am asking everyone to request information from their local school districts on the incidence of autism in the student population (focussing on grades 1 through 6). My intent is to use this information to demonstrate to govt. the tragic cost of opposing individual funding.

In our School District 47, Powell River, for the year 2000-20001 we had 1257 students enrolled grades 1-6, 10 diagnosed autism/PDD.
2 more Autism + other disease. Undisclosed number of children undiagnosed but likely in the spectrum.Incidence of diagnosed children: 1 in every 101 children.

Rate of recovery or independant functioning to date for anyone 16 or over diagnosed with autism/PDD in our community 0.

The majority of families whose children are diagnosed autism/PDD and are now teenagers are putting their children into group/foster homes.

A rocket scientist is not needed to figure out that individual funding for "effective" treatment for "all" children diagnosed would save the taxpayers of this province huge sums of money.

If you can get those figures please email me at thujalog@home.com or fax 604 487 0038 0r phone 604 487 0038. Should be available from the school district or a ministry supported child care consultant.

As October is Autism awareness month consider encouraging your local community newspaper to publish how great a problem this is for your community.

Just a reminder that autism related services are under a review and a contentious issue right now and that any action on your part will contribute to making a difference.

Feel free to contact me if you have questions or concerns.
Sincerely, Alex Barclay

[Deleted User]

If there is anyone who lives in Richmond who is running an ABA program with a school aged child it is very important that you contact me AS SOON AS POSSIBLE!!
Dee Dee Doyle -604-275-4537,(cell) 604-454-4090

[Deleted User]

To: all families pursuing individual funding for effective treatment of autism/PDD.

Our family has been asking for funding for our sons (Patrick) treatment program (Intensive Lovaas style ABA directed by WEAP- now the Vancouver Early Autism Project) since April of this year. We started treatment in July. In the last month we received a letter from Minister Reid verifying that our son being 7 years of age doesn't "qualify" for effective treatment of any kind. As we are not about to take "no" for an answer we have turned to our MLA for help. We have recently received some very promising cooperation from our MLA on this front. Our MLA, Mr. Harold Long (Sunshine Coast), always returns our calls and has read through reams of info we passed on to him. He met with us for an hour to better understand what we were asking for as well as find out what we needed him to do to advocate for Patrick. He seemed genuinely dismayed at the current situation in the province and has promised to address the Ministers in the appropriate ministries. Our MLA's efforts would benefit from support of other like minded MLA's.
I understand that ministry services are currently under a review. As parents we should realize that there may be no better timing than now to turn to our elected representatives and ask of them to do the job we elected them to do…advocate for their constituents. If you have not asked your MLA to advocate for your child as of yet then I appeal to you take that action now. Every MLA we can get in our corner will bring us a step closer to ending the discrimination perpetrated on our children by our current government policies. These current policies must change and will if we make ourselves heard, please talk to your MLA,s. If you have your MLA on board already please ask him to talk to ours. Feel free to email me privately if you like at thujalog@home.com or call 604 487 0048.

Thank you,
Alex Barclay
Powell River, BC

[Deleted User]

If there is anyone attending the FEAT of Washington Conference at the end of the month and would consider sharing accomodation with another person please contact me:

deedee doyle
604 275-4537
ddoyle@nwdbc.com

[Deleted User]

hi,
my wife Amanda and myself along with our two young boys, are in the early stages of emmigrating to Canada. Our eldest son Thomas, who is 7, is mildly autistic. (His brother Jamie,4,is not).We are both 30 years of age and are looking for people to correspond with via e-mail. It will be a daunting yet exciting time for us when we leave the UK, so if anyone would like to setup correspondence with us, to answer any of our concerns, particularly regarding Thomas' education and therapy, or just questions on life in general in your country, we would be most grateful. Even if you know someone else who would like an English pen-pal. We are looking to settle in BC although not sure which area yet, this will depend on what is best for Thomas and also employment.(I am a Precision Engineer).
So if you can spare a few minutes every couple of weeks or so, we would be delighted to become your friends.Our e-mail address is: s.hinks@ntlworld.com
Many thanks

Stephen and Amanda

[Deleted User]

Today I watched my daughter enter a brand new preschool classroom, one she had only visited once before. I watched her seek out and interact with her peers. I watched her listen to and follow the directions of her new teachers with no prompting from myself or her aide. I watched her play with children. To others unaware of her diagnosis, she was indistinguishable from her peers. I feel as though I have seen a miracle.

My daughter began ABA therapy 15 months ago. She had limited language, screamed at most adults who asked questions of her or gave her direction or even just tried to interact with her. She disliked peer interaction and was extremely anxious around peers. She exhibited ritualistic and rigid behaviour and extreme behavioural outbursts when these rigidities were interrupted. She engaged in large amounts of delayed echolalia and had a greatly limited receptive understanding of language. The changes we have seen since beginning her program have been immense. We have still have lots of obstacles to overcome. But after speaking with a group of parents of autistic children who are not in ABA programs, I wanted to share a positive story to those getting started.

When I began our daughter's program, several from this group told me how detrimental ABA would be. THey told me it was not worth the cost, the effort and that is was cruel. I was told of speech services, Hanen classes and other useless theories that I chose to ignore. Almost a year and a half later, several from this group have changed their perspective. They see my daughter in the community, she is proof that they were wrong.

To those of you just getting started, this battle you have taken on is truly worth it. Under the guidance of a qualified consultant, you will see gains you never thought possible.

Michelle
mother of Breanna and Griffen

[Deleted User]

With all of the talk about the government considering individualized funding, my husband and I have written several letters to our M.L.A., the Premier and Hon Linda Reid. Today I actually received several responses. I would like to urge other parents to voice their concerns, their support for and their need for individualized funding. Below is my response to the government outlining why I feel EIBI is inadequate and why individualized funding is the only solution.

To the Honourable Linda Reid;

Thank you for your response to my various emails and letters. In your email to my husband and I, you provided a link to some information about the EIBI program which I read with great interest. I found the guiding principles of the EIBI program to be very interesting and would like to point out exactly why I feel your program is greatly flawed.

Your Ministry document (http://www.mcf.gov.bc.ca/spec_needs/autism/update1.pdf) states that one of the guiding principles of the EIBI program is its basis in up to date scientific findings. I'm interested to learn what exactly the findings are that this program is based upon as well as the training that those providing the services have? Justice Allan states in her ruling in the recent lawsuit "The expert witnesses agree that the most effective behavioural therapies are those based on principles of ABA. tHere are no effective competing treatments." She goes on to say "It is ironic that the very limited treatment services provided by the Crown not only fail to meet the gold standard of scientific methodlology; they are positively discredited by one of the Crown's own expert witnesses."

The EIBI program does not provide ABA therefore it is not providing the most effective behavioural therapy. What it is providing is a whitewashed version of behavioural therapies. THe service providers who are apart of the program have not been trained at qualified clinics and/or Universities with appropriate qualification in ABA. Applied Behavioural Analysis is based on science and requires extensive knowledge, extensive study and extensive supervision by qualified people to be applied correctly. One cannot simply read a book and provide such therapy. What we are talking about is a retraining of a child's mind, it isn't something that should be entrusted to unqualified people.

The EIBI program service providers are the same service providers previously used by the provincial government prior to the lawsuit, the same service providers that were found to not only "fail to meet the gold standard of scientific methodology" but to be discredited by crown witnesses.

I would be interested to see the up to the minute data that the EIBI program is based upon. Show me the data. My children's ABA programs are based on scientifically proven methodologies. I would be pleased to have an opportunity to show you the scientific basis of our programs as well as the data we have collected to prove that it is effective. I would be pleased to show you what our therapy entails and the incredible progress my children have made. After only 15 months of intervention my daughter integrates with her peers and is almost indistinguishable. SHe carries on conversations, interacts with peers and adults and is academically on par or above her age level. Her struggle is not over however she is but one example of how well this therapy can work when designed by a highly skilled consultant.

I was also interested to note that the above mentioned document states "Children and their families are best-served when they receive the right supports at the right time based on their own uniqe needs." My family is not being served. I am paying the medical costs for my children's treatment. I have two children with autism ages 4 1/2 and 3. To date the government is not providing any supports for them. And while I feel that the EIBI program is inadequate, it is irrelevant considering that this program does not even cover the community I live in. We can not wait for services, the clock is ticking too fast for my little ones. The time is now, so where is this support?

In your response to my previous letters you mentioned a thought provoking meeting between MCFD and parents. I attended one of these meetings and tabled a document outlining a model of how individualized funding to parents of children with autism might like, the CIAT model. This example is based upon a Ministry of Health program called CSIL and was written by DR. Sabrina Freeman. The document can be found at http://www.featbc.org/CIAT_brief.pdf. Following such a model would simplify the move to individualized funding for your goverment, it would also save great amounts of money.

Through top-heavy administration the EIBI program appears to be a great waste of money. I've been told that to provide 20 hours a week of one-to-one treatment for a child within the program will cost this government $60,000 a year. I currently run two programs, each child receiving 30 hours a week or more of one-on-one therapy for under $40,000. It sickens me to think of how tax payer dollars are being wasted, particularly since the services being provided are far from adequate. Individualized funding would solve this issue of waste. Made accountable for their spending, parents would take great care to ensure that every last dollar went towards treating their child, not towards over-inflated administration costs.

I would also like to point out that early intervention has been proven time and time again to save tax payer dollars. Children who receive intensive behavioural therapy early in life need less assistance througout their growing years. This saves you money. Keeping in mind that autism is not magically cured at 20, untreated autistic children become expensive, institutionalized autistic adults who need one on one support to get through a simple day. My children will not. My children will be taxpayers and live full lives with little if any assitance. But only because of the therapy they receive at the cost of our family.

I strongly believe that individualized funding is the only solution to the absence of scientifically based programs for children with autism. First and foremost, the current government must rectify the situation created by the previous government. As stated by Justice Allan "In failing to make appropriate accomodation for their health care needs, the Crown has discriminated against them… Only effective treatment can reduce the marginalization of autistic children and their exclusion from the mainstream of society." THe rights of our children can not continue to be denied.

Small scale program such as EIBI do not solve this situation. Providing indequate services to 25 children in the lower mainland, 25 on Vancouver Island and 25 in kamloops is a small dip in the bucket. 1 in 500 children are on the autistic spectrum, 75 kids shortlisted for early intervention services? Hardly a solution. I've been told that services will be increased to eventually provide for every autistic child in BC. Too late for my children no doubt. Individualized funding could be implemented immediately for all children. For parents such as myself who have done the leg work, it would simply be a matter of completely paperwork and a small amount of administration. For those who need to set up programs, the supports are already greatly in place. FEAT of BC already assists parents in setting up programs for their children. By using the information we already provide to parents, much of your work would already be done for you.

Individualized funding is a viable option. Able to serve families in all areas of the province, lower in administrative costs, family centred, specific to the child's needs, individualized funding would solve many of the intrinsic problems of the EIBI program. In addition, it would allow families to seek out truly scientifically based treatments.

We started my daughter's aba program 15 months ago on a hope and a wish that the system would soon change. Your party platform provided us with hope that these changes would soon occur. Your government has the opportunity to do somethign truly great, to help children become children. I hope that my wishes will soon come true and that your government will live up to their potential and bring about the era of change these children so greatly deserve.

Thank you for your time,

Michelle Himmelright.

cc: Randy Hawes (M.L.A. for Maple Ridge – Mission)
Justin Himmelright
Tracey Morrison

[Deleted User]

Self-advocates and microboards.

The person that posted the original post here indicated that they were not familiar with these groups so I thought that I would shed some light on the subject if I may.

The self-advocate group is a very active group of individuals with special needs that advocate for their rights. Microboards are non-profit groups usually formed of self advocates and their families that apply to the ministry for funding to pay for care and respite services. These were formed to assist families financially in caring for their family members with disabilities and also to pay for some respite services. As a family member caring for an adult with special needs the gov't will not pay you to do so as it is considered a conflict of interests yet they will pay for strangers to care for that family member. That is why micro boards were formed. The micro-board bills the ministry and the micro board is the one that provides funds to the family.

Robyn in Powell River
Mom of Justin age 5 ASD and sister of special needs sibs one of which lives with me.

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