[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

[Andrew Kavchak]

From the Senate Hansard, Tuesday, October 21, 2014.

Autism Awareness Month

Hon. Jim Munson: Honourable senators, October is Autism Awareness Month, presenting us with a great opportunity to learn about and reflect on this disorder and its impact on people's lives.

Though I speak about autism at this time every year and, of course, on April 2, World Autism Awareness Day, I'm not at a loss to say something new. Thanks to the determination of a great many people, the tens of thousands of people who make up Canada's courageous autism community, there is always some groundbreaking, innovative treatment or discovery to highlight. But we have new numbers now. It's amazing; after 10 years, the national rate of autism is now 1 in 68. It is moving to a range of a public health crisis.

In the early years, my messages were about autistic children and those who cared for them. Today those children are adults, and their parents and other family members are older, too.

With the transition of autistic children into adulthood, Canadian society is confronted with a fundamental challenge: dealing effectively with the lifelong needs of autistic people.

During the break week, I spent two days at the Ability Hub in Calgary, Alberta. Funded by the Sinneave Family Foundation, it's an impressive centre providing services for the autism community in Alberta. There are so many good things happening in Alberta and at this Ability Hub, such as the state-of-art software and data services program for autistic adults. It is called Meticulon, and here autistic adults can find meaningful work by being matched with a software company. There's also a community access program that trains and matches adults with companies like London Drugs, Tim Hortons and Safeway.

There's another program, called Launch, which focuses on improving the quality of life and level of independence of adolescents and adults with an autism spectrum disorder.

Some 425 families are utilizing the Ability Hub. They like to talk about promising practices there. I look at the Ability Hub in Calgary and see an opportunity share those practices with the rest of the country. Step by step, we are moving toward the major recommendation in our Senate report, Pay Now or Pay Later, a national autism spectrum disorder strategy.

In many respects, the federal government has taken up the challenge with disability tax credits, job creation initiatives and research chairs, but there is so much more to be done. The key is to bring everyone together and to have everyone working from the same page.

I stand here today thinking of a little five-year-old boy I met last week also in Calgary. His name is Tahir. He was being nurtured at the autism organization called the Society for Treatment of Autism. My goodness, what great work they do! Tahir was with a behavioural intervention therapist in a sensory room, a room that offers a peaceful but stimulating environment. Tahir smiled and held my hand. Sometimes he would joyfully jump up and down, communicating the only way he knows how to. He is non-verbal, but he still speaks to you through his smile and his eyes. Tahir wouldn't even smile two years ago.

My hope during this Autism Awareness Month is that when Tahir reaches adulthood, there will be a real place in society for him to thrive, to work and to love. Step by step, we as politicians have a moral obligation to get him there.

We are all in this together.

[Andrew Kavchak]

From the Hansard of Parliament, Wednesday, October 29, 2014.

Autism Spectrum Disorders

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

Mr. Speaker, I am pleased to present this petition with dozens of signatures that were collected by my constituent, Dee Gordon, as she walks twice a week from Etobicoke North to downtown Toronto to raise awareness of autism.

Autism spectrum disorders, ADDS, are pervasive disorders which affect 1 person in 88. They are characterized by social and communication challenges, and a pattern of repetitive behaviours and interests. They are lifelong, affect life experience and exert emotional and financial pressures on families.

The petitioners call upon the government to work with the provinces, territories and stakeholders to develop a pan-Canadian strategy for ASD, including awareness and education campaigns, child, adolescent and adult intervention and innovative funding arrangements for financial therapy, surveillance, respite care, community initiatives and research.

[Jemma Lee]

This may be a bit late, but this is important for Vancouver parents:

Do NOT vote for Patti Bacchus. She is about as anti-ABA as they get.

[Laurie Guerra]

I just wanted to say that I have had more opportunities to promote science-based treatment for autism since I started campaigning than I have in the entire time since getting an autism diagnosis!!!

I've talked to people from all over Surrey including heads of both universities. I have told so many about the documentary, "Medicare's Orphan's" and have had numerous e-mails of thanks from those who have viewed it.

People still don't believe that autism is treatable and some are still in the dark ages when it comes to treatment options.

Parents don't stop advocating for your child with autism and every other child out there with a diagnosis. Tell them all about ABA; the only science-based treatment for autism.

If we don't quit we will win!

Oh… and don't forget to vote tomorrow.

As Dione posted;

Jodie WICKENS – Coquitlam School Board
Mike LEWIS – West Vancouver Councillor
and me, Laurie GUERRA- Surrey Councillor

[Dione Costanzo]

Hi everyone I hope it's ok to do a shout out here for some advocates from our community that are running for office in the November 15th (tomorrow!) municipal election!

COQUITLAM – Jodie WICKENS is running for School Board Trustee in SD43 http://www.jodiewickens.com

WEST VANCOUVER – Mike LEWISis running for re-election for West Vancouver Councillor http://www.mlewis.ca

SURREY – Laurie GUERRA is running for Surrey Councillor http://www.safesurrey.ca

Please do your homework on who is running in your municipality and GET OUT AND VOTE!!!!!

If I missed anyone please post.

[Tina]

Just realized my email address had a typo. The correct one should be : tnkaccount at gmail.com

[Tina]

Hi all,
Jennifer and Doug brought up a very good point. I also would like to add that not only children with special needs in elementary but also youth with special needs in secondary should be considered to receive the subsidy for the lengthly strike as well. I am very interested in connecting with parents who are thinking of class action to ask for this subsidy. My son was in grade 8 and was even charged for school lunch for June when the strike was on. How ridiculous it was.
I can be in touched via this email : tbkaccount at gmail.com
Thanks

[Jenn Ralph]

Hi all, feel free to use, adjust and send to as many gov, union and media people as possible:

This is what I just sent: Please feel free to use and adjust as letters to as much media and ministers as possible: Dear Ministers DeJong, Cadieux, Fassbender and Premier Clarke

We are parents of a teen daughter with autism who needs support, like all special needs children, during this strike. Unlike typically developing teens, most special needs teens cannot take care of themselves during the day.
She is not and has never been part of the "supported child development" center funding which is completely irrelevant to most kids with autism, let alone other special needs in BC. She has had a full time ABA Support worker aide for her autism in school since grade one. Although she is over age 12, she cannot look after herself and needs the extra support that she would normally get in school but that she is now prevented from accessing.

What is the government doing to "subsidize" and accommodate these special needs students like they are doing to other typically – developing students that need child care? The funding that is normally allocated to them while in school (18,500/year) should be allocated to them during this strike.

Why is there no plan or accommodation for special needs students during this strike? Please provide the subsidy that they would normally get in school, during the strike. $18,500 divided by 188 school days = $98.40/day so we can continue, at least to a certain extent, her supportive learning that she requires for her disability.

We would appreciate a response. Ironically our kids are what appear to be at the core of the strike – class composition – yet both sides seem to have overlooked our kids and their rights and needs. Kids first? We currently find that slogan very ironic to say the least, and need a solution ASAP.

Thank you and we look forward to hearing from you. We previously sent this request to Minister Cadieux and the Premier with no response to date.
Jennifer and Doug

[Andrew Kavchak]

Opinion: Children with autism are hardly a ‘first priority’

BY JOEL YANOFSKY, THE GAZETTE JULY 17, 2014

Excuse me for calling “BS” on a remark attributed to Nadia Caron, a spokesperson for Quebec’s family ministry in the July 16 Gazette article titled “Preschool for autistic children in jeopardy.”
Gazette reporter Monique Muise paraphrases Caron as saying “the first priority must always be the children.”

Parents of children with autism, in particular, know this is hardly the case.

If it were, the government wouldn’t be tolerating such long waiting lists for children with autism, knowing as everyone does that the best way, the only proven way, to treat autism is through early intervention.

The government also wouldn’t exclude autism from being fully covered by our health-care system, since it must be aware that if it did, it wouldn’t just make life easier for countless parents and children; it would save all of us money in the long run.

In other words, the government could, if children really were a “first priority,” endorse the best of both worlds — common sense mixed with compassion.

Unfortunately, though not surprisingly, both these components seem to be missing in the family ministry’s narrow-minded refusal to recognize the good work The Little Red Playhouse in Montreal West is doing, and refusal to cut the “specialized preschool” some well-deserved slack.

My son Jonah is 15 and on the autism spectrum. My wife, Cynthia, and I obtained his first diagnosis privately almost 11 years ago. Even then, knowing very little about how the system works, we were pretty sure the wait for an official diagnosis would end up taking too long. We were right about that. It took nearly two years to get him in to see a doctor at the Montreal Children’s Hospital.

Reading about The Little Red Playhouse, and hearing about it from others like Kristine Barbara, who is quoted in the article and is a Facebook friend, it sounds like it would have been an ideal place to have sent Jonah.

No doubt, we would have tried to do just that, if it had existed then. Of course, it didn’t because the parent running it, Sharon McCarry, the mother of a 10-year-old with autism, had yet to have her life changed by autism.

That she and so many others like her have reacted to this challenging experience by helping her own children and others should be a reason for celebration — not red tape.

I was reluctant to use the abbreviation BS in writing this piece. I know it’s probably not the best way to get what you want to say into a family newspaper. But Cynthia and Jonah and I have dealt with more than our share of red tape — from the health-care system, the school system, social services — and calling it red tape just seems too, well, innocuous. BS, on the other hand, is right on the mark.

On The Daily Show, Jon Stewart used to do a regular bit called BS Mountain. It’s the term he and his writers coined for the proliferation of media and government double-talk. He seemed, once he got rolling on one of his rants, to take an exasperated and perverse glee in saying the bleeped word over and over again, making it clear, along the way, that not only are we being lied to, but we know we’re being lied to.

Joel Yanofsky is the author of the memoir Bad Animals: A Father’s Accidental Education in Autism.
© Copyright (c) The Montreal Gazette

[Bev Sharpe]

July 9, 2004. 10 years ago today, I sat in the Supreme Court of Canada court room, along with several other Auton litigants.

The Auton case is the case where a small group of parents brought an action against the government for failing to provide medically-necessary Applied Behaviour Analysis treatment to their autistic children.

Both at the Supreme Court of BC and the Appeals Court of BC, it was found that the failure to provide this treatment constituted a denial of the children’s rights under the Equality provision, Section 15 of the Charter of Rights and Freedoms.

This decision was appealed by all of the provincial and the federal governments, all the way to the Supreme Court of Canada.

On that hot, sunny day, 9 yrs. ago, I chose to skip the lunch break, and wait outside the court room, to ensure all of us getting our seats back at the front of the court room for the afternoon session. It was then, that the Sherriff informed me that it was the first time he had ever seen the Supreme Court of Canada re-arranged, to allow for a record number of intervenors against our autistic children.

Yes folks, the injustice against providing treatment to our children was pervasive across every province and territory.

In a stunning and shocking decision, the Supreme Court of Canada did not uphold the lower court decisions that ABA treatment was medically-necessary and must be provided. Rather, the Supreme Court of Canada ruled that the “core health needs” of our children had been provided. They meant that if our children break a leg, or get strep throat, they get treatment, but not for their Autism. The judiciary said that though they recognized ABA as “gold-standard” treatment, that they, the judiciary could not order the provinces how to spend their health care dollars.

The Auton litigation put the spotlight on the necessity of ABA for our children, essentially shaming every province to provide some funding of this treatment. Any funding provided today can be taken away with the stroke of a pen. It is vitally important that we get ABA treatment included in Medicare.

What can parents do now?
Hire a bonafide Behaviour Consultant, and start your ABA treatment program for your child.

Political activism with focus, clarity and persistence is the only thing that will change Medicare to include ABA treatment for Autism.

Parents educate yourselves. Read the Auton and Hewko decisions. Watch the film, “Medicare’s Orphans” at medicareforautismnow.org

Sign up for your free online newsletter Association for Science in Autism Treatment
ASAT is a not-for-profit organization of parents and professionals committed to improving the education, treatment, and care of people with autism. http://www.asatonline.org/

Get involved with Civil Rights Now! at civilrightsnow.ca

Read Dr. Sabrina Freeman’s blog at http://autismpundit.com Sabrina has always maintained that you must question everything about Autism treatment and expect evidence.

Thank you Dr. Sabrina Freeman for founding FEATBC and spearheading the Auton litigation. Thank you to all the parents, families, and concerned citizens that advocate for ABA medically- necessary treatment for autism.

[Author]

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