[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.

 

---

—-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

 

---

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

[Andrew Kavchak]

Hi Folks,

And here is another lawsuit against the school system in Canada…

http://www.thespec.com/news-story/5470437-mom-sues-school-board-for-nearly-16-million-alleging-autistic-son-denied-food-toilet/

Hamilton Spectator

Mom sues school board for nearly $16 million alleging autistic son denied food, toilet

By Jacques Gallant

When Christian Thorndyke was an elementary student, he spent some of his school days alone in a room without access to food, water or a toilet, pleading to get out, the 12-year-old Mississauga boy with autism and his mother allege in a multi-million-dollar lawsuit against the Peel District School Board.

Christian and his mother Karen are seeking almost $16 million in damages from a lengthy list of defendants that includes PDSB superintendents, principals, teachers and staff at the various schools he attended over a period of seven years.

The defendants have 20 days to file a statement of defence once they have been served with the statement of claim, which was filed in court on Monday.

"As this is a private matter between the Peel District School Board and the family involved, we are unable to disclose any information about this case," says a statement from Louise Sirisko, superintendent of special education support services at the PDSB.

"We remain deeply committed to supporting this child and his family, and believe this goal is not well-served by talking about this very personal matter in the media."

The allegations, which have not been proven in court, include:

A support worker would "place him in a chair and hold his arms tightly behind the back of the chair for certain periods of time" as a form of punishment when he was in kindergarten at one school;

Christian was "placed in a solitary isolation room for several hours, sometimes for the duration of the entire school-day" at another school where he completed Grades 1 to 3; the school referred to the room as "Mexico."

The room was "approximately the size of a small walk-in closet" and "the defendants … would alternate sitting on a chair against the door to prevent Christian from exiting the room."

He was placed alone in a room at another school on several occasions, and that at both schools, he was denied access to food, water or a toilet while in the room, and forced to clean up after urinating.

Another school made "false and misleading" reports to Children's Aid "with the intent to destabilize Karen Thorndyke's custody of Christian, and with further intent to intimidate Karen Thorndyke from subsequent involvement with the school."

Christian told the Star in an interview he felt anxious in the schools and was having nightmares.

"I felt awful," he said. "When I used to go home, I was scared to go to school the next day."

Karen said that as a child with autism, Christian can sometimes have outbursts when he feels he's in a difficult or uncomfortable situation, but that unprovoked outbursts are rare.

His mother told the Star he is doing much better now in his new school. She described the last few years as "emotionally draining and scary" and said the goal of the lawsuit is to see change happen.

"It's a huge problem and one that needs a spotlight," said Karen Thorndyke, speaking from the office of her lawyer, Rhyan Ahmed. "This doesn't end with Christian. These kids are autistic, some are non-verbal. The use of these cells, as I like to call them, is very detrimental to their well-being."

School board spokeswoman Carla Pereira, speaking generally and not about this case, said schools make use of what the board calls "alternate learning environments" for students with special needs, to de-escalate their behaviour if it presents an immediate danger to themselves or others.

"The guiding principle is that the length of time spent in an alternate learning environment should be as short as possible," she said.

"A principal or vice-principal is typically consulted in situations in which a student has failed to settle after a period of 30 minutes. If a student remains unsettled, we would generally call parents and ask for their support in picking up the student from school."

Pereira said the use of the room would be written into a student's safety plan, which is shared with parents.

[Andrew Kavchak]

Hi Folks,

Please check out this article about the lack of autism prevalence figures in Canada.
http://www.vocm.com/newsarticle.asp?mn=2&id=53243&latest=1

It is really a shame that so many years after former Health Minister Clement announced his “five point autism plan” that the federal government, with its “Public Health Agency of Canada”, still has no clue how many Canadians are affected by autism. Without any numbers, it is no surprise that there is no “national strategy”. Of course, the Clement plan (and at the time of the announcement he was quoted in the paper as saying we don’t need a strategy since we have this new plan of his), included a “by invitation only” conference, and a website, etc….

Of course, the plan included a point about “looking into the possibility” of gathering stats…and they even have a blurb about it at the Health Canada website.
http://www.hc-sc.gc.ca/hc-ps/dc-ma/autismsurv-eng.php

And the Public Health Agency of Canada also has a blurb about it.
http://www.phac-aspc.gc.ca/publicat/cdic-mcbc/32-2/ar-04-eng.php

But if the federal government has been looking into it for years, what is the result?
As the latter webpage states:

“Conclusion
Linking administrative datasets is a cost-effective option that could allow us to expand ASD surveillance to more regions of the country. In light of the public health importance of this group of disorders,5 NEDSAC will continue to evolve and to provide information for policy makers, families and advocates on the occurrence of ASD in Canada.”

In other words, after all these years it appears that the federal government is still “looking into it” and really does not really know how many Canadians are affected by autism. Perhaps it is because they are not really interested. After all, as Mike Lake and Stephen Harper and Tony Clement have repeatedly told us….”It’s provincial”. Clearly, not a priority.

By the way, is the Clement Plan website this one…?
http://healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/autism-eng.php?_ga=1.150324213.2108981854.1425992833
If so, the lack of any discussion about treatment is…strange.

[Bev Sharpe]

A father of a child with autism has been taking the local government ABA authorities to the Human Rights Commission and Tribunal in Ontario. Attached are two reports that would be worth reading. The first report is the Gov't of Ontario bureaucrats and the second points out the errors and incompetence in their collecting, analyzing and presenting of the data.

The reports can be found here:

https://www.facebook.com/pages/Autism-Anonymous/356271844396904

[Andrew Kavchak]

From the House of Commons, February 2, 2015.

Petitions.

Autism Spectrum Disorders

Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, I present several petitions regarding autism spectrum disorders, or ASDs, which affect one person in 88. These disorders are characterized by social and communication challenges and a pattern of repetitive behaviours and interests. They are lifelong, affect development and life experience, and exert emotional and financial pressures on families.

The petitioners call on the government to work with the provinces and territories and stakeholders to develop a pan-Canadian strategy for autism spectrum disorder.

[Andrew Kavchak]

From the House of Commons, Thursday, Jan 29, 2015:

Autism
Ms. Kirsty Duncan (Etobicoke North, Lib.):

Mr. Speaker, I rise to celebrate Etobicoke North's extraordinary and unstoppable Dee Gordon, who today completed walking over 500 kilometres to raise awareness for autism spectrum disorder.

While Dee walked, her son Tim drove the support truck, and together this mother-son team collected thousands of signatures to ask the federal government for a pan-Canadian autism strategy.

Dee does not want other Canadian families to have to fight for early diagnosis, affordable treatment programs, and support programs as she has had to fight for her amazing son Jacob. She hopes the government will implement recommendations in the 2007 Senate report called “Pay Now or Pay Later: Autism Families in Crisis”.

Dee's children, Tim, Krystal, and Jacob, are proud of her, as is her Aunt Mary. Our office and our community are proud of her and her tremendous undertaking for Canadian families.

I ask all members to join me in recognizing Dee Gordon and the walk to Ottawa.

And from the Senate on the same day:

Dee Gordon

Hon. Jim Munson: Honourable senators, today is no ordinary day in the Senate. We have a visitor in the chamber, and her name is Dee Gordon. It is my honour to pay tribute to her this afternoon, a courageous mother.

Dee is a remarkable woman whose strength of purpose and character are best conveyed by telling you about the gruelling journey she has completed. Imagine this: Two weeks ago, on January 15, Dee embarked on a walk from Toronto to Ottawa, a trek called Walk to Ottawa. She has done this to raise awareness about autism spectrum disorders and to gather signatures on a petition for a national ASD strategy. We're talking about January for two weeks, Toronto to Ottawa.

Described by one of her friends as a "warrior mom," Dee has three children, one of whom, a young teenager named Jacob, has autism. For 13 years she has struggled to get the care and support he needs. It has been tough, but it certainly has not gotten her down.

Dee has explained the significance of walking to the nation's capital during the coldest winter month we have. She put it this way:

The reason why I picked January is because Jacob's struggle is like ploughing through the snow every single day. It's difficult, it's harsh, you have to plan ahead.

Walk to Ottawa has run like a well-oiled machine, with online updates and encouraging messages posted from all corners.

This is important for us, honourable senators. This is close to home for all of us because we were all in this together, and still are. You will remember our 2007 report Pay Now or Pay Later: Autism Families In Crisis. It has been on her Facebook page. She made this walk for Jacob, but the petition's support is for what we had proposed seven or eight years ago.

The only thing that would make me prouder than witnessing the positive influence of the Senate's report on the autism community is the creation, as the report said, of a national strategy.

We have a mental health strategy and we have the Mental Health Commission. Where did they come from? The idea was right here in the Senate. Why not the same for autism?

With each step Dee Gordon has taken over the last two extremely cold weeks, she has helped bring us closer to that goal. She arrived on the Hill just one hour ago with the plea she has carried with her throughout her journey and will present to the government, on behalf of all us who support the call for strategic federal action, a petition with tens of thousands of names calling for a national autism strategy.

Dee, these few minutes are about you, your very special family and the people who have supported you. I am delighted that your three children are able to join you to hear testimony about your extraordinary determination and commitment to making a difference. You are a very special mom.

This afternoon at Minto Place, honourable senators, there will be a reception. I hope some of you can make it to the Lisgar Salon of Minto Place from 3:30 p.m. to 5:30 p.m.

This part of the story may be over. Dee's walk may be over, but we as senators will not rest because we know we are in this together until this country has a national autism spectrum disorder strategy.

Thank you, honourable senators.

Visitors in the Gallery

The Hon. the Speaker pro tempore: Honourable senators, I wish to draw your attention to the presence of visitors in the gallery. We have with us Ms. Dee Gordon, an Etobicoke resident, an advocate for a national autism strategy who, as we just heard from Senator Munson, has walked from Toronto to Ottawa to raise awareness about autism. Her son Jacob and her family are guests of the Honourable Senator Munson.

On behalf of all senators, I welcome you to the Senate of Canada.

Hon. Senators: Hear, hear!

[Andrew Kavchak]

From the Toronto Sun:
http://www.torontosun.com/2015/01/24/etobicoke-mom-takes-long-walk-for-autism-awareness

Etobicoke mom takes long walk for autism awareness

BY KEVIN CONNOR, TORONTO SUN

TORONTO – Dee Gordon could no longer stand by and watch her autistic son Jacob live in isolation.

So, the Etobicoke mom laced up her walking shoes and embarked on a trek from her home to Parliament Hill to pressure the government for a national autism strategy for treatment.

“As a mom with a child with autism, I have had to fight every day for real help for my child and I have watched other families fights as hard as I have and this isn’t right,” said Gordon, a single mom.

“We shouldn’t have to fight for early diagnoses and treatment,” she said. “We shouldn’t have to beg for money to pay for treatment for our children and we shouldn’t have to live in poverty to ensure our children’s well-being.”

Autism is a neurological condition that impacts brain development and leaves most people with communication problems and difficulty with social interaction.

Jacob, 14, has been in intense therapy since his early days; as he has grown so have the wait times for services.

“Jacob deserves to have what every other Canadian has,” his mom said as she neared Napanee on Thursday. “He is an amazing kid with so much potential, but he needs supports.”

At school he is in a autistic program, but also attends mainstream classes where he can get into a crisis situation simply spurred by a noise level.

“He acts out in a crisis and it disconnects his brain and he doesn’t know who, what when where. When he can’t handle a situation he needs a team for help. We have to look at a different way to teach our children,” Gordon said.

Jacob has dreams of getting married, having children and owning a house.

“He talks about a lot of things. He is brilliant, but needs somebody to reach into him and pull that out,” Gordon said.

Laurie Mawlam with Autism Canada said establishing a national strategy is imperative and will save money in the long run.

“What we have now is a dog’s breakfast,” Mawlam said. “The services available and the wait times vary depending on where you live because everywhere has a different model of support. (Gordon) is bang on that we need a plan at the federal level.”

When an autistic child is helped in the early, formative, developmental years they will have a better chance to succeed, she explained.

“It’s pay now or pay later. When you intervene at a young age there is more bang for the buck. If you don’•••• doesn’t give an individual the chance to reach their full potential and get meaningful employment,” Mawlam said.

After Gordon’s scheduled arrival in Ottawa on Jan. 29, her petition with more than 1,000 signatures calling for a national strategy will be presented to the House of Commons.

Liberal Etobicoke MP Kristy Duncan presented the idea of a Pan-Canadian autism strategy to Parliament in October.

“It makes me sad to think (Gordon) feels so desperate for all the families (with autistic members) that she is walking to Ottawa,” Duncan said. “These families shouldn’t have to fight so hard for help.”

Gordon’s petition can be found at walktoottawa.org.

[Super Dad]

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:
*** A Presentation for PARENTS Only ***

Becoming an Effective Advocate
Basic Skills for Dealing with Government Agencies

by
Jean Lewis
Parent and Advocate

at
7:00pm, Tue Jan 20

in
Welsh Hall West
downstairs in the
West Vancouver Memorial Library

GUEST SPEAKER:

Jean Lewis is one of most prominent autism advocates in Canada. She was previously a founding director of FEAT BC, and a key figure in the Auton and Hewko cases. Jean is currently continuing the advocacy in multiple roles, including directorship of Medicare for Autism Now.

TOPIC:

This is Jean’s advice for all families struggling against government bureaucrats: "As the parent of a special needs child, you must learn how to represent your child's interests at school, in the community, everywhere. You cannot rely on others to do this critical job. Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills."

Jean will present an overview of these skills. Her approach is based on the principle that there should be no compromise in the fight for a child’s human rights, and we should accept nothing less than full support of medically necessary treatment.

DIRECTIONS:

The West Vancouver Memorial Library is at 1950 Marine Drive:
http://maps.google.ca/maps?q=1950+Marine+Dr,+West+Vancouver,+BC+V7V+1J8

The library is easily accessible via Highway #1 Upper Levels, taking either the 15th Street or 20th St. exits.

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

Please RSVP to <asbcnorthshore@yahoo.ca>.

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

[Cathy Fitzhugh]

{Hello Autism Tutors and Therapists}

The time has come again: We need a new lead therapist for our team in central Vancouver (near Cambie and 22nd Avenue.)

Our twelve year old daughter is high functioning, verbal, gentle, affectionate, and entertaining. Her therapy is fascinating, and her progress is swift. She has been doing ABA for ten years. We work under the guidance of Kim Kirsch and the Early Autism Project, hence, it is a home-based ABA program which is supervised by a well-respected BCBA.

Previous experience with ABA programs is a must and previous lead experience would be swell, but as long as you seem bright, caring, and capable, we are interested. A criminal record check will be obligatory. Initial training will be provided along with follow up sessions.

Responsibilities include, but are not limited to: running sessions on your own, preparing for team meetings once a month, overlapping with our consultant, providing reports to the consultant, working on scheduling, and overlapping therapists. You will also need to provide feedback to the therapists and ourselves, train new therapists, oversee data recorded, probe new targets, and coach the team.

You will also be picking our daughter up from school, recording data, facilitating playdates, helping with home living skills, and working with her on her fine and gross motor challenges.

Our team meetings are currently held once a month on a Wednesday evening from 5:00-6:30 and sessions are from 3:00 to 5:30, five days a week: you’d have two or three of them. We also ask that you are able to commit to the team for at least one year.

You should be FUN, responsible, dedicated, and creative. You need to have strong play skills, a positive attitude, and lots of energy and patience. You are a good multitasker, are organized, encouraging, enthusiastic, and responsible. You need to be able to take constructive feedback and implement it immediately. Salary will be negotiable based on your experience and your performance.

If you are interested, please send a short cover letter and your resume to:m cathy.fitzhugh@gmail.com

We look forward to hearing from you, and thanks.
Lots.

{Cathy Fitzhugh}

[Andrew Kavchak]

This is a letter-to-the-editor that I sent to the Globe and Mail today.

Re: “MPs vote to unanimously to provide ‘full support’ to thalidomide survivors”. While the unanimous vote for support to thalidomide victims is certainly a positive thing to cheer about, here is a reality check: motions are non-binding. After several years of lobbying for a National Autism Strategy, the House of Commons also voted to approve a motion calling for a National Autism Strategy (M-172) in 2006. Many people in the autism community also shed tears of joy and relief at the time. However, with the passage of time those tears turned into tears of sadness with the realization that the politicians were merely going through the motions. Although the federal government has done little to follow up with its commitment to those who counted on help for the autism community, we may hope that the federal government’s approach to these medical crises that devastate the lives of many Canadians will finally change in a meaningful way.

[Bev Sharpe]

10 years ago today, November 19, 2004 the Auton decision was rendered by the Supreme Court of Canada.

This judgment upheld the findings of fact from the BC Supreme Court that ABA Treatment was medically-necessary. The judgement failed our children by not ordering the provinces to pay for this treatment.
The serious flaw in the Supreme Court of Canada judgement was that this court, the highest court in the land, did not wanted to force the provinces how to spend their health care dollars.

What Auton did was put a spotlight on the inhumane exclusion of our autistic children from Medicare.

What can you do?

Continue your child’s ABA treatment program – it is the single treatment with the science , data and efficacy behind it – it works.

Keep informed. Sign up for the free newsletter from Association for Science in Autism Treatment at:
http://www.asatonline.org/signuphttp://www.asatonline.org/signup

Join Medicare for Autism Now! Their website: medicareforautismnow.org
Your autistic child is a Canadian citizen who is worthy of their core treatment need for ABA and worthy of being included in Medicare.

Get active with Civil Rights Now! People living with a disability in British Columbia do not have the legal rights and protections they believe that they have. Anyone and everyone, as a result of an accident, an illness or merely by getting older can become vulnerable. And that’s why everyone needs to get involved in this campaign. Their website is: civilrightsnow.ca

Read and understand the Auton and Hewko decisions. These decisions outline critical facts which you can use to advocate for your children’s treatment both at home and in school.

Excellent blog to read: Autism Pundit by Dr. Sabrina Freeman: autismpundit.com

Thank you to Dr. Sabrina Freeman for founding Families for Early Autism Treatment and for her tireless work on both the Auton and Hewko cases.
Thank you to each and every family who courageously provides an ABA treatment program for their child.

[Author]

Replies