[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

[Nancy Walton]

Hi featers,
It's that time of year again, when I decide to take up my battle with the Provincial Government over the discrimination that our kids experience with regards to the home owners grant. This is not a huge grant, but it can save our families about $100 – $250 per year if we get it. Here is the problem. The grant is only given if the person with the disability has a PHYSICAL disability. It is not considered for our children and adults who need constant one-on-one support. I once wrote to them to point out this discrimination and this is what they wrote back:

"Eligibility for the additional grant due to a disability is directed to property owners, or relatives permanently living in the home, who have a permanent physical or mental disability, which is sufficiently severe as to result in a considerable decrease or loss of mobility".

In other words, you need a physical disability to get the grant.

I have written to my MLA a number of times and to no avail. I am wondering if anyone would like to start up a class action lawsuit, or look into going to the small claims court for this. I do not have time to start up something, but would be happy to join if anyone else would like to organize.

Any volunteers?

[Super Dad]

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:

a screening of

Medicare's Orphans
The fight for healthcare for children with autism in Canada

with
Jean Lewis
David Marley

at
7:00pm, Tues May 15

in the
Oak Room
in the South Building of the
Delbrook Recreation Centre

TOPIC:

This documentary chronicles the long battle to include children with autism in the Canadian health care system, the so-called universal health care system which systematically excludes some of the most vulnerable of our society. The film describes the amazing lengths to which Canadian parents have gone to right this wrong. It shows the important successes in the courts, and the ultimate failure of the legal system at the highest level. The filmmakers take us on a journey from coast to coast, to show us the successes of children who are fortunate enough to receive treatment, and the suffering of children who cannot get the health care they needed.

Here are some previews:
http://www.youtube.com/watch?v=bTJ9kCt9wZM
http://www.youtube.com/watch?v=6T5M16CtgcU
http://www.youtube.com/watch?v=fu_Rcw7AAAU
http://www.youtube.com/watch?v=xC3MA1Y-xj0

GUEST SPEAKERS:

Jean Lewis is one of most prominent autism advocates in the history of Canada. She was previously a founding director of FEAT BC, plus a litigant and member of the legal steering committees for both Auton and Hewko. Jean is currently continuing the advocacy as a director of Medical for Autism Now.

David Marley is a dedicated community activist and a director of Medical for Autism Now.

DIRECTIONS:

The Delbrook Recreation Centre is at 600 West Queens Road, North Vancouver:
http://maps.google.ca/maps?q=600+West+Queens+Road,+North+Vancouver,+British+Columbia

For those going north/west on Highway #1: take exit 17 for Westview Dr, turn right at Westview Dr, and then turn right at Queens Rd. For those going east on Highway #1: take exit 17 for Westview Dr, turn left at Westview Dr, and then turn right at Queens Rd.

Coffee/Tea and snacks provided. Donations are greatly appreciated (but not required).

Please RSVP to Dragos at <asbcnorthshore@yahoo.ca>.

Carol and Dragos
(Co-facilitators for ASBC North Shore Group)

[Andrew Kavchak]

Hi Folks,

I was about to doze off in bed this evening while watching the TV Ontario program "The Agenda" when suddenly they spoke about autism awareness and how they interviewed Mike Lake and how he gave an "unforgettable speech" in the House of Commons on World Autism Awareness, etc. In fact, I read the short speech he gave and I found it to be quite forgettable.

At the risk of being accused of total political incorrectness, I got out of bed and sent the producers at TV Ontario the following email:

As a father of a child with autism I am stunned by how the media completely abandon their usual inquisitive style whenever dealing with Mike Lake and his son. When Mike Lake was first elected I went to see him to ask him for his help in the development of a national autism strategy so that Canadians with autism could get treatment, specifically the only scientifically proven treatment to date (IBI/ABA therapy), covered by Medicare. There is a serious problem in this country when it comes to discrimination against autism under Medicare. My wife and I spent $40,000 in the private sector in the first year following my son's diagnosis because not one single province in this country provides autism treatment under Medicare and here in Ottawa we were on a two-year waiting list to get help from the ministry of social services. Would Mike Lake help our community to address this problem? No. He worked for the Oilers when his son was diagnosed and told me that a professional hockey player cut him a cheque for $10,000. Unfortunately, not every parent of a kid with autism has such generous and rich friends. When a Private Members' Bill calling on the Minister of Health to work with the provinces to develop a National Autism Strategy was debated and voted on in the House of Commons, he voted against it along with his party and the Bloc so that the Bill would die even before it was examined by the Health Committee. He also wrote a three page open letter explaining why he voted against it (about his view that this was "bad law" and unconstitutional, etc). How can one explain the tories running an election campaign calling for a National Cancer Strategy and developing a National Spinal Cord Rehabilitation Research Strategy and going to court to seek the right to establish a national securities regulator when it suits them, but when it comes to treating kids with autism, they can't do anything because "that's provincial". The feds own the Canada Health Act and negotiate health accords with the provinces in which billions of dollars are transferred in exchanged for specified standards for medical services, except autism. I gave Mike Lake a petition to table in Parliament calling for Medicare coverage for autism treatment and a national autism strategy. Although it was tabled by dozens of MPs and Senators in Parliamanet, Mike Lake is the only MP that I know of who refused to table it. He took one look at it and gave it back to me. I was shocked. But then I learned something about Mike Lake's views and knowledge about autism. When I met with him I brought to his attention that the US-based CDC issued a report stating that the prevalence rate was 1 in 150 and called it a national public health crisis. He was unfamliar with that figure, but when I stated it, he immediately replied without any hesitation "I don't believe that!". This week the CDC issued a new study indicating that the incidence rate is now 1 in 88. Does Mr. Lake dismiss that figure too? His annual speeches about his son strike me as missing the mark. As an MP in the House of Commons his speeches should be about what he and his party and the government are going to do to help Canadians. When he spends one minute every year on World Autism Awareness Day speaking about his son and ignores the public policy questions (when I read the text in Hansard he did not say a word about the public policy issues), he misses an opportunity to be helpful. At the same time, he demonstrates his opportunism. Did you know that he and his party were against the private members' bill to declare a Canadian Autism Awareness Day? Apparently he had some concerns with some wording in the preamble of the bill. Something about prevalence rates and the fact that autism treatment is not covered by Medicare in Canada. These are the real issues that need to be addressed when determining whether a politician is helpful or not towards those with autism in Canada. While Mike Lake has managed to convince a number of journalists in the media into thiniking that he is a champion for autism on Parliament Hill because he brings his son to photo opportunities and talks about him lovingly like any parent talks about their child, it is surprising that few have actually challenged him with the question: and what have you done to help parents of autistic kids get access to the desperately needed treatment for their loved ones? One journalist interviewed him a few years ago and told me afterwards "He did not run on autism". That was clear to some of us shortly after his arrival in Ottawa. Of course we hope one day there will be a change in approach and the adoption of some meaningful, concrete and helpful action by the federal government. That day has not yet arrived.

[Andrew Kavchak]

Hi Folks,

I know this may sound repetitive, but…the incidence rate is up, the government announced the same thing again (sort of), and we have an opportunity to raise more awareness, etc.

A few years ago a Conservative MP was elected in Alberta by the name of Mike Lake. He has a child with autism. I met with him shortly after his arrival in Ottawa and presented him with the petition calling for Medicare for Autism Now (the one that was tabled in Parliament about 88 times). He is the only MP that I ever met who refused to table it. I remember being really surprised when he gave it back to me and said he would not table it. Also during that conversation I remember bringing to his attention that the CDC says the incidence rate of ASDs is 1 in 150. He flatly stated "I don't believe that".

Well, today the CDC says the incidence rate is 1 in 88.
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

Wonder whether he will summarily dismiss this figure too?

Wonder whether the PHAC and Health Canada are still dithering over the (im)possiblity of gathering statistics so that public health policy could be based on some Canadian facts?

However, something was announced this week by the Feds in the realm of autism (notwithtanding their historic claim that "it's provincial"). But did the Feds not announce such funding for a similar chair back in 2007? And did that funding project not get cancelled when they could not find a candidate? So is this old wine in a new bottle being presented as a new unprecedented initiative that is moving the yardstick on Fed activity, or what? Obviously something is better than nothing, but when they refer to "continually advancing", they rarely balance it out with a corresponding reflection of the backward steps that have been taken. In Ontario, Premier Dalton McGuinty's government made plenty of announcements years ago that new monies were being allocated to autism programs. Then Access to Information Act requests revealed that millions had been diverted to other programs. No press releases were issued to announce the autism moneies diversions and reductions.

Anyways, World Autism Awareness Day is coming up in early April. Expect some MPs (perhaps even Mike Lake?) to hand out some autism pins at another "feel good" cocktail reception on the Hill.

News Release

Harper Government invests in autism treatment and care

For immediate release

Ottawa, Ontario (March 27, 2012) –The Honourable Leona Aglukkaq, Minister of Health, today announced funding for the Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program. The purpose of the Chair is to support a new investigator bringing innovative approaches to the treatment and/or care of autism spectrum disorders. The CIHR Institute of Neurosciences, Mental Health and Addiction in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation are offering this funding research opportunity.

“Our government is committed to continuously advancing research in the field of autism,” said Minister Aglukkaq. “We are pleased to partner with Canadian organizations and believe it will help stimulate research and, ultimately, improve the health of people with autism.”

The announcement took place at the Children’s Hospital of Eastern Ontario (CHEO) Autism Intervention Program Offices in Ottawa. The Minister was joined by Member of Parliament Mike Lake, and Parliamentary Secretary Dr. Colin Carrie, both of whom have children with forms of autism. Also joining the Minister was Scientific Director of the CHEO Research Institute Dr. Martin Osmond and Scientific Director of NeuroDevNet Dan Goldowitz.

“Significant gaps exist in applied research that focuses on autism diagnosis, treatment and care,” said Dr. Goldowitz. “We hope that this Chair opportunity will attract interest from the best science minds across the globe who see the potential that this position will provide in making a real difference in the lives of children, youth, adults and their families who live with autism every day.”

Investigators working in Canada and those willing to relocate to a Canadian research institution are eligible for the Chair. Investigators not currently conducting research in the field of autism spectrum disorders must demonstrate how they would bring new approaches to the treatment and/or care of individuals with autism spectrum disorders. The Chair’s application form is available on CIHR’s website.

– 30 –

Further information:

Cailin Rodgers, Office of the Honourable Leona Agluakkaq, 613-957-0200

David Coulombe, Canadian Institutes of Health Research, 613-941-4563

The Canadian Institutes of Health Research (CIHR) is the Government of Canada’s health research investment agency. CIHR’s mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.

[Brad & Roxanne Black]

I was told today by the Assistant Deputy Minister of Children and Family that parents are very happy with the Invoice Payment Option. Just to be sure that this is in fact the case I would like to do a survey to ask individual families. Could you please email me @ bradrox@shaw.ca to let me know if you are happy with the Autism Funding Unit and the current system that is in place.

Thanks
Roxanne Black

[Dione Costanzo]

From the ABA Support Network:

Tonight's Tax Talk will take place at 1630 154th Street. This is in a condo complex called Carlton Court. The building is on the North East corner of 16th Ave and 154th Street (or Best on the White Rock side). There is limited parking, so try to carpool if possible. Parking is available on 16A Avenue in the 15400 block (east) and 17th Ave in the 15300 block (west). BE CAREFUL of "no parking" and 1 hour limit parking signs and fire hydrants.
They love to ticket here because it's close to Peace Arch Hospital.

Come to the front entrance of the Condo and Nancy will let you in.

There are a few spots left please rsvp to dione@abasupportnetwork.com if you haven't already and you would like to attend.

[Dione Costanzo]

The ABA Support Network
Presents

“Autism and Taxes”
With special Guest – Dave Taylor, Parent

7-9pm, Tuesday January 31, 2012

Dave Taylor is the parent of a child with autism and has been administering a home based ABA program for 7 years. Dave has done extensive research into the financial side of managing an ABA team and has gathered information on all kinds of issues from his own experiences and from feedback from other parents.

Some of the topics that Dave will cover during this meeting are:

• Disability Tax Credit
• Medical Expenses
• Federal tax credits and tips for tax time

We would also like to encourage parents to bring their own experiences and questions to share.

Meeting information:

Date: Tuesday January 31, 2012
Time: 7-9pm
Location: Carlton Court Amenities Room
1630-154 Street, Surrey (White Rock)
RSVP: dione@abasupportnetwork.com *note* space is limited

[Sabrina Freeman]

Hi Everyone!
I'd like to thank Andrew for all his efforts. I really do appreciate it and have great respect for Andrew's tenacity!

The more effective you are, the less likely the system will be to award you anything! This conclusion is clear from 1) the recipient of the Order, 2) Andrew's original letter, and 3) the heavily edited version that was published.

The fact that we did the right thing is the greatest reward for me irrespective of how things turned out.

Btw, my e-mail has not changed: skfreeman@skfbooks.com

You can also reach me through my blog:

http://www.autismpundit.com

[Barbara Rodrigues]

What a joke – proves how scared they still are of Dr. Sabrina Freeman. Idiots.

Thanks for posting Andrew.

Barbara

[Andrew Kavchak]

The Globe published a heavily-edited version of the letter.

What readers think

Jan. 2: Letters to the editor

From Monday's Globe and Mail
Published Monday, Jan. 02, 2012 2:00AM EST

Order, please

While your published list of new recipients of the Order of Canada is interesting (Canada’s Honor Roll – Dec. 31), the publication of a list of people who were considered but not given the Order might be even more revealing and informative.

I am thinking of a person who has done outstanding work to help the disabled but was not named to the Order. I trust that the Canadian establishment and elite are comforted and reassured knowing that another former prime minister has secured his promotion to “Companion” of the Order of Canada.

Andrew Kavchak, Ottawa

[Author]

Replies