[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Deleted User]

Hello.

You are receiving this message because at sometime in the past two and a half years you have attended the Autism Society of BC Tri Cities Community Group or you have expressed interest in knowing about the activities of this group.

I am very disappointed that I have been put in the position of having to send this somewhat controversial email to you but I firmly believe that the Community Group should be operated with attendees input particularly when it comes to sharing information about those who attend meetings. I have diligently worked to remain publicly neutral regarding the recent political events at ASBC but I am now having my hand forced by the new Board.

For those of you who attended the October Community Group meeting you will have heard about a recent communication received by me from the ASBC Board of Directors requesting your names be provided to them. This Board is the newly elected Board of Directors that was elected in June 2002 at a very unusual Annual General Meeting where a group of individuals became ASBC members immediately prior to the AGM. Then by a narrow majority elected a majority of Board members who were viewed by many ASBC members as being politically aligned with another group which supports Lovaas Applied Behavioural Analysis as the only valid form of treatment of people with Autism Spectrum Disorders and whose tactics have been viewed by many ASBC members as being unsavoury and unethical.

In August a group of ASBC members presented this new board with a requisition requiring an Extraordinary General Meeting (EGM) be held for the purpose of removing the new Board and electing a new Board. At that meeting 69% of those in attendance voted in favour of the removal of the new Board but this majority was unsuccessfully because the ASBC constitution requires that such a ‘Special Resolution’ requires a 75% acceptance rate. The ‘controversial’ Board remained in place.

In September the Director of Programs and Services of ASBC resigned from her position at ASBC. Part of her job included the responsibility for supporting community groups. No new staff person has been hired to take on this responsibility. Instead a new Board member has assumed the job of chairing a new committee about Community Groups. She sent all facilitators a letter asking that they provide her with an update of community group activities along with the names of those who have attended community group meetings. The specific reason the names of community group attendees were requested was not elaborated. Some facilitators have openly stated they would not comply with the request for names as they were considered confidential.

When you attended the community group which I facilitate I circulated a sign up sheet advising you that the purpose of this sheet was so that I could communicate with you regarding important autism news and upcoming meetings. I have and will not share this list unless you wish me to. It is important that you advise me by November 8th should you wish to have your name and contact information shared with the new ASBC Board. Your opinion on this issue matters very much so no matter what your opinion please advise me of your wishes.

Facilitators who have not yet provided the list of the attendees of their group have, as of today, been advised by the new President of ASBC that they will be removed as facilitators should they not share this information in a timely fashion. It is my intent not to share this information unless you wish me to and if necessary I will resign my position as an ASBC Community Group facilitator. Should this occur I invite you all to continue to attend group meetings as I will continue to provide this service at the Family Resource Centre on an independent basis. I will welcome all those with an interest in Autism Spectrum Disorders to join me and I will provide to all a broad range of Autism information.

Thanks for your attention to this important matter. I look forward to hearing your viewpoints on this matter.

Facilitator

ASBC

I though this was quite interesting. How many families who don't know the in and outs of what happened at the autism meeting are being misguided by such letters as the one above. Any ways I though it was important to stay on top of things and this include what happens at the autism society as some new members are trying to make a diference others are trying to make the changes more difficult. This is again another reason why we need to support the new board who have gone out of their ways to make a difference and who for the first time in a long time truly represent ALL the families of children with autism.

For the new board we support you 100 %

Thanks and keep it up!

[Graham Egli]

RE: Latest Ruling

As a parent of a child with autism I have a few questions regarding the recent ruling on BC government ABA funding.

1) Has FEAT submitted a formal response to the ruling along with an action plan and timetable?

2) Has anyone yet sued the government for the funding in light of the ruling?

3) If not is there a time period related to appeals etc that we must wait for? Or can we sue today and if so who do we sue?

4) Do we also include the school boards to ensure funding is made available for ABA therpists in public classes?

5) What has been the BC teachers postion now that government must fund ABA for all? Will they blanket permit our ABA therapists in the classes.

Any insight is appreciated.

[Pete Stelmaschuk]

It was great to see such a large turn-out of parents with autistic children at yesterday's Community Living meeting. My regards to the Maple Ridge Autism Support Group. It was great to meet such an actively positive group! I encourage all parents to attend the next Community Living meeting in their area.

It appears we are at a time of changing government structure, particularly regarding MCFD. The more informed we are of these changes, the better advocates we will be for our children.

Shelley Bonwick
Zane's Mom

[FEAT BC Admin]

Press Release – Autism Society of Canada
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October 21, 2002 — Quebec Human Rights Commission Supports Class Action by Children with Autism to Halt Systemic Government Discrimination A group representing hundreds of families of children with autism spectrum disorders announced today at a press conference that the Quebec Commission des droits de la personne et des droits de la jeunesse (Quebec 's Human Rights Commission) has informed them of its intention to intervene on their behalf in their class action suit against the Quebec Government. The families have undertaken this legal action to put a halt to the Quebec Government's systematic discrimination which has been denying their children a medically necessary treatment, intensive behavioral early intervention. Only last week, a British Columbia Court of Appeal ruling against the BC Government established a clear precedent that it is discrimination under the Canadian Charter of Right and Freedoms for a provincial government to not provide medically necessary fully funded intensive behavior intervention for children with Autism Spectrum Disorders of all ages as long as deemed beneficial by the child’s physician.

By rejecting the Government of British Colombia's appeal of the BC Supreme Court’s Auton decision, the BC Court of Appeal’s ruling on October 9 has provided additional support to the Quebec parents' class action suit. The unanimous decision upheld the Auton decision which requires the BC Government to provide intensive early behavioral intervention, as a medical necessary treatment, for children with an Autism Spectrum Disorder (ASD). It has also opened the door for legal action on behalf of many thousands of children with autism conditions in various provinces in Canada who currently are being denied treatment. The Court of Appeal also extended the decision so that even school age children with Autism Spectrum Disorders, through court intervention if necessary, will be able to access such intervention if requested by the family physician (with the written support of a neurologist or psychologist), with non-compliant civil servants facing possible contempt charges. This decision will be go a long way to compel provinces and territories, such as Quebec, that have been unwilling to finally provide effective autism treatment to provide it regardless of severity, specific diagnosis or age.

The court decision is all the more important given the rapid increase in the number of children diagnosed with autism conditions (63% increase from 1999 to 2001 in Canada ). It is widely recognized that early intensive behavioral intervention can significantly improve the functioning of children with autism, which the BC Court of Appeal noted in its decision, and is critical to avoiding an otherwise bleak institutionalized future. Effective treatment provision will help to reduce lifelong costs to governments (cost-effectiveness research indicates by 50%), and will reduce the human suffering of people with autism conditions and their families. Because appropriate services are generally not available, human suffering associated with autism conditions in Canada is profound

Two Canadian courts have now spoken: not providing effective treatment in the form of intensive behavioral intervention to people with Autism Spectrum Disorders is discrimination under the Canadian Charter of Rights and Freedoms. Autism Society Canada, therefore, throws its full support behind the legal action undertaken by the Quebec Autism Class Action Committee.

[Deleted User]

It amazes me that MCFD is handing over funding to the
Community Living branch. Is there a difference?? These are medically disabled kids who DON'T NEED BABYSITTERS AKA RESPITE THEY NEED MEDICALLY NECCESSARY TREATMENT. I can't believe what I am reading. It amazes me.

My opinion as always.

[Sabrina Freeman]

The Autism 2002 conference and Community Living Transition

Hi everyone,

For those who were unable to attend the recent Autism 2002 conference, here are a few thoughts based on my experience at the event.

The conference was VERY interesting on a number of levels; here are two important points gleaned from the conference. The issues have implications for individualized funding for treatment.

IEII Funding

I had the opportunity to speak, informally, with a government employee who informed that if a region runs out of IEII funding, the manager of that region has instructions to contact Victoria with a request for additional funding, specifically for the IEII program. So, for those of you who have been told by social services staff that you are on an IEII waiting list, here are some options.

Ask to speak with, or meet, with the social worker's supervisor and suggest that they phone Victoria to request additional funding for the IEII program in your region. If that doesn't work, then
– call Linda Reid, Minister of State for Early Childhood Development, and inform her that your child is eligible for the IEII program funding but you're are not receiving funding because the program has run out of funds in your region. If that doesn't work,
– you may want to consider establishing a relationship with a lawyer to work with you in this area. Call FEAT of BC; we can refer you.

Individualized Funding through the Community Living Governance Model

As some of you may be aware, in April 2003 the IEII program is going to be administered by a quasi-government body. I heard a lecture given by Tim Stainton, Ph.D., U.B.C. Professor of Social Work, who is heavily involved in this transfer of funding authority. Dr. Stainton appears to be (at first glance) a proponent of individualized funding. Right now there is a Transition Steering Committee in charge of the transfer of authority. Although this sounds like simply a bureaucratic reorganization (yet another MCFD ‘restructuring’ shuffle), I am somewhat concerned that a group comprised of parents of children with a VARIETY of special needs will have power over autism IEII funding. For those of you receiving this funding, it is important to remain vigilant.

Why the concern? Partially because Dr. Stainton's comments and some unfortunate facts and opinions were telegraphed by this key speaker.

Points to keep in mind follow:

– Conspicuously, IEII parents running ABA programs are not part of the Community Living transition steering committee. The question is, will they be part of the group that decides who does or doesn't receive funding, and how much? This appears to be a small group of parents who have a disproportionately large amount of power and discretion. They are unelected and most certainly do not represent the majority of children with autism who require necessary treatment.

– Dr. Stainton seems to challenge the fact that IEII funding is earmarked for "medically necessary" autism treatment. When a mother asked about whether such necessary treatment was going to be means-tested, Dr. Stainton said that although many folks believe that this is medically necessary treatment, the BC Court of Appeal had not yet decided on this and that we were all going to have to wait for that ruling. Key point is that Dr. Stainton was not prepared to concede that ABA is medically necessary treatment. This is quite troubling and should sound the alarm for all families running home-based programs.

– Throughout Dr. Stainton’s talk and via discussions at the conference, I arrived at the opinion that government bureaucrats have successfully turned a large group of parents of people with developmental disabilities against those of us who are advocating for autism treatment rights. They have used the tried and tested technique of "divide and conquer." Specifically, the government pitch appears to be, "since the court case makes us spend all this money on autistic children, there just isn't enough for your special needs children." Of course, this false zero sum argument was made and lost by BC Attorney General lawyers in both BC Supreme Court and BC Court of Appeal.

The Community Living group — and I've spoken to a few of the movers and the shakers who have cozied up government for many years, and whose grown children are being funded — denies that there is a qualitative difference between the treatment needs of our children, and the housing/care/respite needs of the families they represent. We know there is a big difference. Our children's primary need is costly treatment for a health issue, not respite! This is potentially a VERY SCARY situation.

Another view of the Community Living group seems to be, apparently, that we are trying to change our children purely to conform to society … that we should just let our children be who they are and work to see that society changes for — and adapts to – them! In my opinion, the fact that this attitude is pervasive in Community Living quarters reflects an utter ignorance regarding what autism treatment is all about and what this devastating condition holds for children and families absent bona fide treatment.

Dr. Stainton offered an anecdote about one autistic person who he apparently 'deinstitutionalized,' and for whom he found emplyment. In telling this story, he displayed a profound ignorance of ABA and likely offended 3/4 of the audience. In his defense, Dr. Stainton DID admit he knows nothing about autism or ABA. However, the anecdote shows his hand regarding an attitude towards ABA and children afflicted with autism that is an anachronism.

For those of you receiving IEII funding, you need to be vigilant and communicate the moment your monies start to be eroded. We all know that the amount of IEII only pays for 1/3 of your program. We cannot afford any erosion whatsoever. In addition, the minute any means testing is introduced (Dr. Stainton claimed there would be no means testing for autism), you MUST communicate. Understand that if we do not hang together on this, we will hang separately. Remember that many parents with special needs children who are not autistic, are not happy about gains made by our community. They feel as though somehow their children are going to lose out … what Justice Allan refered to in Auton 2 as government pitting one special needs group against another. The saddest part of this for me, personally, is that I would be more than willing to share ideas with these parents on how to see that government lives up to its responsibilities for other special needs children. I think we all have to help each other, irrespective of our children's disabilities.

I strongly suggest that every parent receiving IEII funding e-mail me directly (skfreeman@featbc.org) and I will compile a list. The moment I hear that this money is being eroded, I will contact you all and we can then meet to review all legal options. Unfortunately, I know of no other way to keep the Community Governance structure accountable. Quite frankly, I'm surprised that the government is so naïve as to think they can can delegate the treatment needs of our children to a group of parents who don't believe in the legitimacy of medically necessary autism treatment needs and then expect them to administer the funding as the courts have ordered. The last time the government set up a similar parent group was with the "At Home" funding program, which we all know discriminates against children with autism because the four criteria for funding are: a child's dependence for 1) eating, 2) toileting, 3) dressing and 4) sleeping. As we all know, once a child is in an IBI program, the above criteria no longer apply for many children with autism – the entire program has a clear physical (vs. neurological) disability bias. All the other issues parents with autistic children face, such as safety concerns for example, don't count for folks running the "At Home" program.

Government hides behind this group of parents by saying, "it's not up to us, it's up to the parent group." I hope the new Community Living structure for autism treatment funding does not turn into the latest rendition of the Monty Python Cheese Shop skit. Gains made thus far for younger children may be reversed unless we are stay smart and well-organized.

If you would like to know more about the way that IEII money is to be distributed, please e-mail the conference speaker at: timst@interchange.ubc.ca for policy clarification. But remember, he has been appointed by government to administer a quasi-government body.

Sabrina Freeman, Ph.D.
Executive Director,
FEAT BC

[Jenny Obando]

I agree with Michelle, we cannot assume that the fight is over or that we should rest, if anything this is the time to resume the letter writting and demand our children's rights be honor and respected regardless of their age or outcome of therapy.

I wanted to also share with parents that my MLA's office here in Maple Ridge told me today that apparently changes to the individualized funding would take place at the end of November, at least that is what they were advice of;this apparently a response to the Court Appeal.
Their recomendation to us was to write a letter to Hon. Linda Reid requesting funding and stating our case before her.

I don't know how right or not they may be, but it is worth it in case they know something we don't.

So, I urge All the parents of children with autism; who have programs, who want to start programs and are not financialy able, regardless of the age of your child; to write the minister and to write your social workers and chain of command also.

We need to put the pressure on.

Good luck to us all.
Jenny( Tristen's mom)

[Deleted User]

Community Living has already taken over control of funding for autistic children in many communities. Families are being offered individual funding of behavioural services for their children by Community Living. Except for the title of the childs 'worker' these services are no different than what Community Living has been offering these children for the last decade.

[Pete Stelmaschuk]

I agree with Michelle, parents with autistic children need to be at the meeting in Maple Ridge. I did not know that the "recommendations to the Govt show that autism funding will be included in this package to this body, but these funds will not be earmarked for children with autism." These are concerns that need to be addressed.

The meeting takes place at 11995 Haney Place, Maple Ridge – 9 am – 3 pm, Saturday, October 26th. See ya all there.

Shelley Bonwick
Zane's Mom

[Deleted User]

I received this email from a friend who shall remain anonymous regarding funding being transferred to community living. I know there has been some discussion about this before…

" I received an invitation to an all day meeting on Saturday Oct 26th 9:00 am – 3:00 pm from the community living office here. It appears that MCFD will be handing changing the system of distributing individaalized funding and handing this over to another body. The website, according to some other parents showing the recommendations to the Govt show that autism funding will be included in this package to this body, but these funds will not be earmarked for children with autism. This body is also supposed to implement a 17% budget reduction. Furthermore, it is proposed that families will be income tested receive services.

If anyone would like to attend this meeting, youcan rsvp to Karen, or Amanda at 467-8700"

I have not yet called, but my feeling is that this is a maple ridge meeting. However I highly encourage those of you in other areas to call your local office and get info on when they will be meeting. We must remain active, our funding is not secure, we can not fall asleep at the wheel for even a moment…

Our children must receive medically based treatment, all children of every background and from every family. Income testing tends to run at a ridicuously low amount. As a parent of 2 children with autism and a household on a 1.25 income (I work very part time) we struggle to pay for our children's programs yet we were not of a low enough income to qualify for any assistance. Did the government take into account that we had double to expenses to shoulder. No of course not!

please parents, call your community living office now, we can't allow this to happen, if it is indeed true.

Michelle

[Author]

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