[Deleted User]

Hi

Here is something of interest that I received today… To be honest, I don't know who this group is (or is it a government committee?)

Rob

NOTICE OF PROVINCIAL MEETING
FOR SELF ADVOCATES AND FAMILIES
COMMITTED TO INDIVIDUALIZED FUNDING
AS AN OPTION FOR SERVICE AND SUPPORT

WHO: Any self advocates and family members that wish to see Individualized Funding as a viable option for families and individuals within the Community Living Services sector. This meeting is intended for all those interested and is not connected to any one group or option for Individualized Funding.

WHAT: Over the past three years or more self advocates and families have been meeting to discuss how best to create a mechanism for Individualized Funding for our loved ones with developmental challenges. As an extension of those meetings, a small group was struck to look at ways to incorporate the vision, philosophy, ideas and concepts into a working model that could be implemented by government (see WHY below). This group is currently working to synthesize those ideas into a proposal. This proposal will be available shortly, and will be the focus of the meeting September 22, 2001.

WHY: The new Provincial Government has made a public commitment to re-creating services within the Ministry of Children and Family Development, including Community Living Services. They have further stated that this commitment is built around the theme of bringing supports, services and decision-making closer to the community. This could mean many things. The Minister and Deputy Minister have stated they are open to considering proposals that demonstrate a strong vision and solid community support. However, the timeline for this process is very short. Information and proposals must be finalized, have demonstrated support, and be back to the Ministry by the end of September. The time to act is now.

This meeting is not intended to review whether or not we are committed to the concept of Individualized Funding. Is to comment on the proposal, fine tune, and strategize for presentation to government.

WHERE: Centre for Peace,
1825 West 16th Avenue, (West 16th and Burrard)
Vancouver, B.C., V6J 2M3

WHEN: Saturday, September 22, 2001

TIME: 9:30am to 4:30pm (A light lunch will be provided)

To ensure adequate seating and reserve lunch please RSVP by September 17th to:

Linda Perry, Vela Microboard Association of B.C.,

5686 – 176th Street, Surrey, B.C., V3S 4C6

phone: 604 -575-2588 fax: 604-575-2589

e-mail: lindaperry@microboard.org

This meeting is open to self advocates and families throughout B.C. If you are traveling from outside the Lower Mainland and you require some assistance with expenses related to that travel, a subsidy up to $150.00 per person may be available. Please let us know when confirming your participation if you would like to request a subsidy.

[Deleted User]

Subject:
Re: The FEAT BC Classifieds
Date:
Thu, 23 Aug 2001 18:07:02 -0700
From:
"Tamara Leger"
To:

References:
1

I've seen a large set of the blocks at a store in the kids market on
Granville Island.
Can't remember the name of the store, but they also sell cloth story books,
feltboards galore adn lots of baby type stuff. The foam blocks they get are
from Israel and they also have a catalogue.

Good luck!

t
—– Original Message —–
From: "FeatBC Discussion Board" ;
To:
Sent: Friday, August 17, 2001 6:01 PM
Subject: The FEAT BC Classifieds

> ————————————————————
> FeatBC Discussion Board: The FEAT BC Classifieds
> ————————————————————
>
> By Diana Sabbagh (Sabbagh) on Friday, August 17, 2001 –
> 06:01 pm:
>
> Hi,Iam looking everywhere to find BIG FOAM BLOCKS but it is
> unsucceful, can anyone tell me in which store can I found
> them?
> Thank you for any help.
> My e-mail is : di20d@yahoo.com
>
> ————————————————————
> DO NOT REPLY TO THIS MESSAGE! It is an automatic e-mail
> notification message from the discussion board indicating
> that a new message was posted. If you do not wish to
> receive further e-mail notification messages from this
> discussion board, edit your user or moderator profile to
> turn off the e-mail notification option.
>
> Use this link to go directly to the discussion:
> http://www.featbc.org/chat/cgi-bin/show.cgi?9/9
>
>

[Deleted User]

I have some relevant and important information for parents with children ages 4.5 to just under 6 who live in Pitt Meadows, Maple Ridge and including Tri-City areas. Its the type of information that shouldn't be shared over the net but I'm happy to share over the phone.

My home office number is 467-7054, that will connect you to my voice mail, leave your name and number in the FEAT mailbox and I'll call you back as soon as I can.

Michelle Karren
mother of Breanna and Griffen

[Deleted User]

Just wondering if any members have had the opportunity to peruse the WEAP schedule of fees for service. The rates are based on the model which is chosen. There appears to be a wide variance in hourly rate for the senior supervisor based solely on model – an 80% difference to me is quite significant. Also, hourly rates for phone consults vary quite a bit too. Comments.

[Deleted User]

The view out my window on EIBI,ASBC, and our children.
From Alex Barclay, Powell River, BC

When I became frustrated with current government services and sarted researching treatment options the ASBC site was one of the first places I looked. ASBC advocated therapies such as sensory integration, audio integration, play therapy etc. There was no advocacy specific to applied behavior analysis. This was only a year ago. ASBC has never helped my family in any way that I am aware of nor have I ever given them permission to be my voice to government.
I feel the EIBI program has a place in this province if its mandate is to strive to attain excellence in the quality of behavioral treatment services it provides for families that want the government to orchestrate their autistic childs treatment program. EIBI is going to take a long time to be truly effective and smooth running if it ever does. In the meantime families either sit and wait or break the bank to start effective programs. Government will never be able to create effective behavioral intervention as effective (both in cost and results) as determined parents given the resources to do so themselves. To put into perspective the effectiveness of a government program i will offer our personal experience as an example:
Last September our son Patrick entered grade 1. The school made no preparations (even though we asked them too based on the kindergarten experience and), instead choosing to "wait and see what happens and we'll make a plan from there". Well what happened is "we will wait for the "Gateway" (PREP)contractor/consultant to give us a program". Two months have passed, the school can,t deal with our son past noon and then 11:00 am, we have 4 different SETA's because they are busy doing the contract shuffle for best placement$. Meanwhile the teacher routinely dismisses our son for speaking out of turn during class (our son was/is language delayed), this in turn would leave our son out of class and rejected, needless to say behaviors began spiralling out of control and weekly regression became evident. Our PREP consultant finally shows up does an assessment and designs a program for our son in 2 days flat. At the school team meeting the consultant gives her suggestions (pretty much the same ones we made prior to the start of the school year)and our sons teacher erupts in a huff and declares that none of "that stuff" will be implemented in her class…and it wasn't.We called the PREP consultant after this-the best she could do was offer the advice; "just keep trying".
The school and district could do nothing. This teacher and the Special Ed teacher both told me (seperately) that they have no intention of even trying to deliver our son a grade 1 education. We subsequently removed our son from school for over two months to force changes in staff for our son. He never did attend a full day or take part in class with peers for more than 2 hours in a day last school year.
I do not expect a government EIBI program to fail this miserably but our example should provide some illumination upon the problems of government run, autocratic institutions/programs with union staff.
The government should fully fund our individual programs (to a certain $ limit) with the expectation of full disclosure of program content, progress, and effectiveness. Only when the government can prove without a doubt that their programs are consistently more effective in outcome and less costly to taxpayers should they even begin to question individual funding of aba programs.
In closing I would like to add that we are two weeks into the start of an aba program for our son. We are receiving no direct funding for it. Our son is showing remarkable willingness to learn in this format. We realized that he has answered over 300 questions today and did that with a smile. One of our sons programs is "Conversation".In this program we have been working on; "I am Patrick" , "I am Seven" , etc.. Tonite he went over to the fence and said to our neighbour: "Hi, I am Patrick Barclay, I am seven. Do you want to talk to me?" This is a first!!! We would not be realizing the benefits of effective treatment for our son without FEATBC and the many families who encouraged us through this network of support.

[Deleted User]

Convention on the Rights of the Child November 29/89
United Nations
signed by Canada

Although Mike Harris has failed his CHILDREN on his watch…Canada without a doubt has failed hers.

The United Nations has proclaimed that childhood is entitled to special care and assistance.

Convinced that the familly as the fundamental group of society and the natural environment for the growth and well being of all its members and particularily children should be afforded the necessary protection and assistance so that it can fully assume its responsibilities.

Violations Specific to Ontario IBI

Article 1
For the purposes of the present Convention, a child means every human being below the age of eighteen years unless under the law applicable to the child, majority is attained.
*note in Canada the age of majority IS 18 years of age

Article 2.1
States Parties shall respect and ensure the rights set forth in the present Convention to each child within their jurisdiction without discrimination of any kind, irrespective of the child's or his or her parent's or legal guardians race, color, sex, language, religion, political or other opinion, national, ethnic or social origin, property, disability, birth or other status.

– the Ontario IBI program is discrimnitory by virture of its limitations
it discriminates within the disability by requiring the child to be " severe" to receive treatment
* that is like saying your cancer is not severe enough so we will not treat you even though the
the law has deemed your treatment as medically necessary

it further discriminates by Birth/age not offering treatment to those beyond the age of five
* despite two studies that support the theory that the brain continues to undergo
changes AFTER age five,the Ontario IBI program limits non universal access to appropriate
and necessary medical intervention for autism to those 5 and under.

the government reports " Research indicates that intensive intervention services are most
effective when initiated early in a child's life."
* when do we say to a person with cancer, it's very far advanced so therefore we will offer
you no medically necessary treatment…just go home and hope for the best.
Even when treatment may be less effective in the irradication of dis-ease and or dis-order
we still fight to preserve quality of life and health status.

Subsequently it also discriminates against the status of family.
* Regional Agency discriminates against single custody parents.
It requires the parent/guardian be in the home while necessary medical treatment is being
delivered to the child.
This clearly discriminates against single custody working parents by NOT offereing an
alternative which is center based treatment.
Is it the position of the Ontario government and subsequently Regional Agencies
that single working parents in LOW INCOME brackets quit their jobs in order to meet
the parent/guardian in home requirement and go on welfare?
Or is it encumbant upon the parent to find more financial resources to pay a second person
to be in the home in order to keep their job.

Article 2.2
States Parties shall take all appropriate measures to ensure that the child is protected against
all forms of discrimination or punishment on the basis of status, activities, expressed opinions, or beliefs of the child's parents, legal guardians, or family members.

– the Ontario IBI program violates this article
it discriminates against parents finding direct funding in the best interest of their child
by NOT providing funding to cover required clinical supervison costs but does cover
this cost if the regional agency is selected as treatment provider

– the Ontario IBI program further violates this article
providing two different levels of funding for the same treatment if the parent feels it is
in the best interest of their child to receive direct funding vs regional treatment – if the parent chooses a treatment provider ( usually American ) with a history of success and expertise

*note regional agency will NOT disclose their costs based on a 30 hour/week program
second request has been submitted to ErinOak with C.c Tedesco/Witmer
may need to access information through " Freedom of Information Office" if Regional
Agency does not provide information relavent to making an educated and informed
decision that will have bearing on the best interests of the child

Article 3.1
In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interest of the child shall be a primary consideration.

– the Ontario IBI program violates this article
thousands of children sit on wait lists for medically necessary treatment and therefore is
NOT making the best interest of these children a primary consideration and further
directly conflicts with the government statement ( however biased) " research indicates
that intensive intervention services are most effective when initiated early in a child's
life"

if the government of Ontario can allocate 198million per year for Substance abuse
surely they will allocate sufficient funds to provide ALL children fighting for their lives
the medically necessary treatment they are entitled to under the Charter of Rights ,
Ontario Human Rights Act and the Convention on the Rights of the Child, and in
a timely manner

it also violates this article by offering only " partial " medically necessary treatment
( less than 40 hours )
* note regional agency and COMSOC representative have both referred to studies that
showed "effectiveness" ( note NOT BEST OUTCOME) with
20-40 hours. Neither party has been willing and or able to produce these studies to date
* it would be unheard of for a person with cancer to be offered only half a chemo
treatment or partial radiation therapy, because of course with any medically necessary
intervention
BEST OUTCOME is ALWAYS the desired outcome and " effective" does not
necessarily relfect BEST OUTCOME

3.2
States Parties undertake to ensure the child such protection and care as is necessary for his or her well-being, taking into account the rights and duties of his or her parents, legal guardians, or other individuals legally responsible for him or her, and, to this end, shall take all appropriate legislative and administrative measures.

6.2
States Parties shall ensure to the maximum extent possible the survival and development of the child.

23.1
States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions that ensure dignity, promote self-reliance and facilitate the child's active participation in the community.

23.2
States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child.

23.3
Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives, education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conductive to the child's achieving the fullest possible social intergration and individual development, including his or her cultural and spiritual development.

24.1
States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States parties shall strive to ensure that no child is deprived of his or her right of access to such health care services.

24.2b
To ensure the provision of medical assistance and health care to all children with emphasis on the development on primary health care.

27.1
States Parties recognize the right of every child to a standard of living adequate for the child's physical, mental, spiritual, moral and social development.

27.2
The parent(s) or others responsible for the child have the primary responsibility to secure, within their abilities and financial capacities, the conditions necessary for the child's development.

In accordance with the Convention periodic reviews were/are carried out to help ensure Parties are complying with the Articles set out in the United Nations Charter and subsequently the Convention on the Rights of the Child.
In November of 1999 the Globe and Mail summarized this report and found Canada to be in violation of several articles but in particular was critical of the way disabled children are treated.
The right of handicapped youngsters to participate fully in Canadian society is systematically violated, the study said.
The article by Andre Picard reports;
Canada is systematically violating seven articles of the United Nations Convention on the rights of the child, with the most glaring failure its treatment of disabled children, according to the report released today.
The report says children in Canada with disabilities are not guaranteed basic educational and social services.
Dianne Bascombe, a board member of the CCRC said in an interview " ….from the standpoint of children living in Canada there is a lot of work to be done. We can't allow ourselves to be complacent."
The Convention on the Rights of the Child, which was adopted by the United Nations in 1989, is touted as the most comprehensive human rights document in history.
Twenty countries have included the convention in their constitutions, and another 32 have modified laws to comply with its terms.
Senator Landon Pearson , the founding chairwoman of the coalition, said that Canadian legislation rarely recognizes children specifically, and that means adults can place arbitrary limits on children's fundamental freedoms.
"Putting children in legislation matters because it makes people understand that we are talking about human beings with rights, not chattel, " she said.
The 138 page report, entitled How Does Canada Measure Up?, says there are at least
535, 000 children in Canada who have long-term emotional, physical or mental disability, with at least 4% of them considered severely disabled. Those numbers have not been measured since1991. The report says these children's right to participate fully in Canadian society is systematically violated.
"Children with disabilities having varying opportunities to live full and decent lives and the supports and services they need are not considered an entitlement but a privilege. Many families of children with disabilities do not recieve adequate assistance. Early identification and intervention services are not universally available and the right to appropriate education in the most enabling environment is not guaranteed," the report says.

for more information visit the UNICEF website
http://www.unicef.org
or type in " United Nations Convention on the Rights of the Child" your search engine

I have spoken with a representative of the United Nations and shall update the list as I aquire information. I will be able to post any relevant information by the end of next week.

[Deleted User]

Dear Ontarians and fellow Canadians… ( cross posting from ME LIST)

Over the next few days I will be posting information to the ME-LIST.
I am posting the information in case it may be of value to other parents in Ontario and Canada that may not be aware or have had access to this information prior.
I may lose formatting in the posts, so if you need them in format you may email me privately.
I am in no way suggesting any parent be forced to advocate in a way that they are not comfortable with.
I am not a lawyer and as a disclaimer must say that no action should be taken unless you fully understand
the action and perhaps seeking legal advice in some cases may be warranted.

It is my STRONG opinion that my child's rights are being violated.
1. his rights under the Human Rights Code of Ontario
2. his rights under the Canadian Charter of Rights
3. his rights established by the Convention of the Rights of the Child ( signed by CANADA) are being
violated

The information is based on my son's case , however if it can in anyway help anyone else who feels the same violations are occuring against their child/children feel free to use anything.

Without change to legislation it is more then likely that our children's right to medically necessary treatment for their autism as determined by the Supreme Court of British Columbia will continue to be violated.
It is also possible that new governments may not honor what may provincially be in place without changes to legislation to protect our children.
Best Regards,
Norrah Whitney

[Deleted User]

I wanted to respond to Jean's post ( forgive spelling no spellcheck)…

If the program goes through without the " option" for private funding, I can not tell you what you will be given in words that would still deem me a lady.
It is the very fact that we have this option in Ontario that keeps " some" sense of competition and quality of medically necessary intervention where it is.
If you do not speak now…you will have an Ontario on your hands-
As for the ASO in BC and the woman who suggested that monies might not be managed by parents properly…might I suggest someone direct her to the Ontario program.
I chose direct funding option and trust me their are safe guards…christ I can't even take a pee on my child's time without reporting it to them!
there are logs that have to be turned in
you have to open an account that is ONLY for IBI services/funding
what you CAN"T account for they will take away from you from your next quarter anyway
there is REQUIRED clinical supervision 10% a week of total program hours by a REGISTERED Phyc. whose " medical licsence" could be on the line if their was knowledge of missuse or abuse of the funding eg. only sch 4 hour therapy bill six they would have NO part of it
and that is sort of all beyond the fact that most of us have lost everything to gain a child, but now since its not our money we would steal…
if thats true then Mike Harris is a kind and companssionate man.
I have no doubt with Jean and Sabrina you will make your argument…
if I have one word of advice, dont' sit back and expect others to get it together….you might be more than disappointed by the outcome…
you may be devestated as you watch people who have no clue what they are doing , train as they go on your child with no checks or measures…
lets open a book read a few lines and call ourselves ABA therapists who will hold your child's life in their hands….
FIGHT FIGHT FIGHT!

[Deleted User]

I'm looking for some information from other parents who have chosen to send their kids to private schools rather than public.

I am looking for some ideas on how to best approach a school about your child, their needs, their program etc. Also, how schools were persuaded to start workign with a child, particularly when they do not currently have a child with autism in their school (the school we have been considering is not a religious based school, however we are open to that idea as well).

We will be approaching a school soon that has not to my knowledge any experience with ABA programs. A friend of mine once met a parent of a child in an ABA program whose son goes to Collingwood and spoke of the great success they have experienced there. My hope was to relay these types of success stories to this school so that they will be interested in considering my daughter.

Any information that anyone can share, positive or negative, would be appreciated and kept confidential.

Thank you,
Michelle and Justin
Breanna and Griffen's parents

[Deleted User]

We are looking for a referral to an accountant who is familiar with disability tax credits, income tax, and other ways to claim ABA treatment.

Thanks,
Michelle and Justin
Parents to Breanna and Griffen

[Author]

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