[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]

Hi Folks,

Well, here is another sad case which illustrates how dysfunctional our system is…

From: http://www.cbc.ca/news/canada/ottawa/story/2013/05/01/ottawa-autism-son-left-government-services.html

'Exhausted' parents leave autistic son at government office

Amanda Telford says family can't keep 19-year-old safe anymore

CBC News
Posted: May 1, 2013 7:56 AM ET
Last Updated: May 1, 2013 7:50 AM ET
14

Unable to get enough help from social services, an Ottawa family says they had no choice but to leave their son
— who is living with severe developmental delays — in the hands of the government.

Amanda Telford said she brought her 19-year-old son Phillip to a provincial developmental services office on Tuesday and left him there.

“It’s the most heart-wrenching, gut-wrenching feeling in the world to have to do this,” she told CBC News.

“I felt dizzy, nauseous, upset, I’ve spent a very teary-eyed day today; this hasn’t been a very fun thing to have to
do."

Functions at 2-year-old level

Telford said Phillip is living with a severe form of autism that has him functioning at a two-year-old level, Tourette's syndrome and insulin-dependent diabetes.

Amanda Telford says three incidents over the weekend made her realize she can't keep her son Philip safe any longer. (CBC)
He often wanders away and puts himself in danger, she said.

“[A few days ago], he ended up four kilometres away at a restaurant at Ogilvie [Road] and St. Laurent Boulevard,” she said.
”Ogilvy and St. Laurent is an extremely dangerous intersection.”

Phillip also swallowed 14 pills of high-blood pressure medication which required seven hours of hospitalization on Monday, Telford said.
After he got home, his mother, said he wandered away again.

Politicians little help

Telford said she’s asked for help from both provincial and Ottawa city agencies, as well as her local member of Parliament and member of the Ontario legislature.

She said the response has been there’s no room for Phillip in the over-burdened, under-funded social system.

"My husband and I are absolutely exhausted and medically unwell,” she said. “I am not able to do this anymore."

Autism Ontario caseworker Anne Borbey-Schwartz said the Telford’s situation is not unique. There has been a rise in the number of developmentally delayed adults with autism.

"This family is very brave, first of all,” Borbey-Schwartz said.

“(They) represent many families across the province, if not across the country, that are facing aging adults with autism, with a variety of needs, with very little support and very little services."

Telford told CBC Radio's Ottawa Morning host Hallie Cotnam her family has been getting "passport" funding from the province, but it's been frozen for eight years and now only lasts six to eight months of the year.

She said her son is getting medical and social care at a south Ottawa hospice, a place he's been on and off since he was 16 and somewhere she said he's "very happy."

His mother said it's a temporary solution she hopes will lead to a permanent placement.

[Brad & Roxanne Black]

Please book this date Sunday May 5th at 4pm. It's an honour to have Jean Lewis come out to talk about Civil Rights Now Think Twice Campaign. Civil Rights Now have spent countless months creating a proposal for 2 new laws to protect people living with disabilities. The opportunity to make this happen is now seeing an election is just a few short weeks away.

Jean Lewis your dedication to our children over the years and your continued fight to make things better for all British Columbians. Thanks for all you do as my family has benefited greatly as have many others.

Please rvsp to me Roxanne at bradrox@shaw.ca

Thanks everyone!

[Brad & Roxanne Black]

Attention: Victoria and surrounding areas, please pass this along to anyone you know living in this area. Also feel free to invite candidates running in this provincial election. It's an opportunity that we cannot pass up on. Time to get these laws passed so we all breath a little easier!! Thanks Jean Lewis for your continued support and for continuing to advocate for our children, you must be SO tired.

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
Think Twice Campaign

• Wednesday, May 8th.
• Burnside Gorge Community Centre
• 471 Cecelia Road, Victoria BC
• 7:00 pm to 9:00 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities and in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Civil Rights Now! Directors, Jean Lewis and David Marley, Parent Advocate Jeanette Poulsen, Parent Advocate Judy Hoffman
• Raffle and Q and A
Due to space restrictions, please RSVP ASAP to
Civilrightsnow@yahoo.ca

EVERYONE WELCOME

[Bev Sharpe]

How do you get politicians to pay attention?

Learn how on: Saturday, April 20th
1:30 to 4:30 pm
Coal Harbour Community Centre,
480 Broughton St., Vancouver

Civil Rights Now! presents the:

Think Twice Campaign School –

An on-the-job*hands-on*this-is-how-you-do-it*participatory workshop* which will teach you how to effectively present and advocate for the Civil Rights Now! proposal with would-be and seasoned politicians seeking election in the upcoming provincial election….

We believe people learn best by “doing” rather than watching – so – be prepared to participate and receive on-the-job coaching. You’ll have a great time….we promise….

Presenters: Jean Lewis and David Marley, co-founders, Civil Rights Now!

Sign-up today or on-line at civilrightsnow@yahoo.ca or call
604-290-5737

[Andrew Kavchak]

Hi Folks,
I sent the Glib and Mold the following letter…

Dear Editor,

Re: "What Ottawa can do about autism" (April 8, 2013). In his commentary piece, Mr. Picard suggests that the federal Conservative government's use of the argument that healthcare is "a provincial responsibility" as an excuse to do nothing to address the increasing autism prevalence rates is not sincere since this government has already announced a number of national health care strategies, e.g. national cancer strategy.

Mr. Picard could also look beyond healthcare for other examples of incursion into provincial jurisdiction. In the most recent budget the federal government announced that it would forge ahead with the creation of a national securities regulator even though several provinces oppose the idea and the Supreme Court of Canada indicated that the existing division of powers in the constitution does not permit it. Clearly, where there is a will, there is a way.

The most appalling issue regarding the treatment of autism in Canada is that treatment is not covered by Medicare and many families are having to spend fortunes in the private sector to try to help their children. Notwithstanding all the "autism awareness" going on, there is a complete lack of leadership in Ottawa with respect to putting an end to the discrimination and correcting this injustice across the country.

When Mr. Picard asks "what is the hold up?" relating to the development of a National Autism Strategy, it is because there is a greater government preoccupation with attracting easy votes, and such matters as the national regulation of stock prospectuses, than helping those among the weakest and most vulnerable citizens of the country who can't vote (e.g., children with autism). A new "dark age" has descended upon Ottawa with retrograde priorities and values. How long will Canadians put up with this?

Andrew Kavchak

[Andrew Kavchak]

What Ottawa can do about autism

By André Picard

The Globe and Mail

Published Monday, Apr. 08 2013, 2:43 PM EDT

From the outside, the House of Commons is often viewed through the prism of Question Period, with its faux debating and juvenile jeering. But there are quieter moments when Members of Parliament rise and make heartfelt statements and other MPs actually listen. Such was the case when Mike Lake, a backbench Conservative from Edmonton rose recently and said this:

“Mr. Speaker, April 2 is World Autism Awareness Day and 15 years since my son Jaden was diagnosed. As I have shared many times here, life with autism really is an adventure, unique for every family living with it.

“Our world today is one in which our 13-year-old daughter babysits our 17-year-old son, a world in which I often discover my iPad YouTube viewing history filled with Barney episodes and home video clips of airplane takeoffs and landings posted by random strangers from around the globe, a world in which visitors to our home experience odd and memorable moments, like the dinner this past summer when Jaden suddenly decided to guzzle Italian salad dressing straight from the bottle.

“From time to time, when I tell someone Jaden has autism, they will mention Rain Man and ask if he has some kind of special power. The answer, of course, is yes. No matter what someone's mood is, he can bring a moment of complete joy without uttering a single word.

“I have even seen him bring members from all sides of this crazy place together on occasion, and I cannot think of a more special power than that.”

It was a touching statement from a proud dad and MP who works tirelessly to promote autism awareness. The only public official who has done more to promote the cause is Senator Jim Munson, who has been badgering governments, Liberal and Conservative alike, to take autism more seriously for more than a decade.

Mr. Lake’s statement should get all of us asking an important question: What exactly is being done to tackle the epidemic of autism?

Since Stephen Harper took power in 2006, two Senate committees and one House of Commons committee have studied the issue and they have all reached the same conclusion: Canada needs an autism strategy.

What we have gotten instead is: 1) a declaration that April 2 will be World Autism Recognition Day in Canada and 2) a promise to do some surveillance, i.e. figure out how many people in Canada have autism.

Wearing the ribbons – the autism ribbon is a puzzle pattern means to reflect its mystery and complexity – and bathing Parliament and other public buildings in blue light are nice symbolic gestures. But they are no substitute for a strategy.

The numbers we have out of the U.S. are downright frightening. Data released by the U.S. Centers for Disease Control and Prevention suggest that 1 in 50 children aged five to 17 have autism – or, more precisely an autism spectrum disorder. (Autism is not a single condition but the name given to a range of development disabilities that usually involve difficulty with social and communication skills.)

What parents of ASD children know is that getting a diagnosis can be difficult, and getting help can be nearly impossible. In most provinces, the wait for services stretches months, if not years.
A strategy is not a panacea; it won’t make those very real problems disappear overnight. But having a plan is an essential element if there is ever going to be a co-ordinated response.

That’s why Canada has a cancer strategy and a mental health strategy, two of the most important achievements of the Harper government on the healthcare front. While the government believes delivery of healthcare is strictly a provincial responsibility it has at least conceded, through the creation and funding of these strategies, that it has a role in tackling major societal issues that affect all Canadians.

There is no question autism fits the bill.
So what’s the hold up?

Autism groups, like cancer and mental health groups before them, have put aside their differences and presented a united front.
The Canadian Autism Spectrum Disorder Alliance, a coalition of 40 autism groups, has laid out quite clearly what needs to be in a strategy beginning with decent surveillance data; a commitment to stable funding for therapy throughout the country; and a research program to increase scientific understanding of ASD.

They are the same elements found in an excellent Senate report entitled Pay Now or Pay Later which stressed that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”

Parliamentarians have even more “special powers” than Mr. Lake’s son Jaden. They have the power to act on pressing social challenges like autism.
Is there any real excuse for not doing so?

André Picard is The Globe’s health columnist.

apicard@globeandmail.ca

[Bev Sharpe]

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
Think Twice Campaign

• Wednesday, May 8th.
• Burnside Gorge Community Centre
• 471 Cecelia Road, Victoria BC
• 7:00 pm to 9:00 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities and in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Civil Rights Now! Directors, Jean Lewis and David Marley, Parent Advocate Jeanette Poulsen, Parent Advocate Judy Hoffman
• Raffle and Q and A
Due to space restrictions, please RSVP ASAP to
Civilrightsnow@yahoo.ca

EVERYONE WELCOME

[Andrew Kavchak]

Hi Folks,
If any of you have access to CBC Radio (Ottawa) over the internet, I will be interviewed at 4:45pm (Ottawa time) today. I received a call from a producer yesterday asking if I would like to talk about the "challenges of raising a child with autism". Apparently, they remember me from a few years ago and wanted to do a follow-up story. I can hardly wait to hear what I'm going to say.
Cheers!

[Andrew Kavchak]

Hi Folks,

Well, here we are. World Autism Awareness Day.

So what happens in Canada? Canada AM invites Mike Lake and his son on the program to show that his son Jaden can cook something.

Just a couple of thoughts about Mike Lake's pronouncements…

1) One of the "significant challenges" is that we have a federal government that refuses to show any leadership on the issue (unlike other areas which they consider priorities like the national securities regulator idea).

2) When he says that Canada is doing well compared to other countries, I wish he could have said that to an Ethiopian friend who showed up to one of the rallies that I organized in front of McGuilty's constituency office a few years ago. The gentleman had a six year old son with autism who was on the waiting list for treatment and "aged out" when he turned six. The father was quoted in the local newspaper as saying that we get the same services here for autism as in Ethiopia, except that Ethiopia does not have a government.

3) Two years on a wait list just for a diagnosis is absolutely outrageous and unacceptable in any wealthy and civilized country. How can one acknowledge such gross injustices and then suggest that there is nothing the feds can do about it so it ain't even appropriate to raise the issue with the provinces? What's not diagnosed here is the incredible absence of morality and social conscience.

4) Not as overwhelming as it seems? What Mike Lake forgot to mention is that when his son was diagnosed he worked for the Edmonton Oilers in their marketing department and one professional hockey player immediately cut him a cheque for $10,000 while he was waiting for the provincial services to kick in. He told me so himself. I wonder if that helped ease the shock if he ended up resorting to the private sector for therapy treatment. I remember in the first year following my son's diagnosis that my wife and I spent $40,000. Regrettably, my prayers for a wealthy hockey player to cut me a five-figure cheque never came through.

From:
http://www.ctvnews.ca/health/families-communities-mark-6th-annual-world-autism-awareness-day-1.1220419

CTVNews.ca Staff
Published Tuesday, April 2, 2013 8:39AM EDT
Last Updated Tuesday, April 2, 2013 9:09AM EDT

Fundraising and awareness-raising events are being held across the globe Tuesday, to mark the sixth annual World Autism Awareness Day.

Each year on April 2, autism organizations bring attention to the brain developmental disorder that first shows signs in children between 12 and 18 months of age.

In Canada, the House of Commons passed an act Last November, officially making April 2 "World Autism Awareness Day."

People with Autism Spectrum Disorder often have difficulties with social interaction, verbal and nonverbal communication and show repetitive behaviours. ASD is associated with intellectual disability, difficulties in motor coordination and attention, and other health issues including gastrointestinal and sleep-related problems.
According to the U.S. Center for Disease Control, between one in 50 and one in 88 American children has ASD. Without federal monitoring in Canada, there is no equivalent data for this country. But ASD is considered the most common neurological disorder among Canadian children.

UN Secretary-General Ban Ki-moon said that it is important to bring international attention to the disorder to end stigmatization, lack of awareness and inadequate support structures.

"Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential," he said in a statement.

Edmonton MP Mike Lake told Canada AM that Canada still faces "significant challenges" when it comes to supporting children with autism.

"I think globally we’re doing well compared to other countries, but there are significant challenges. It depends on which province you’re in," he said, noting that the provinces are responsible for providing treatment, education and social services for autistic children.
Lake, whose 17-year-old son Jaden has autism, said families can be on waiting lists to for an autism diagnosis for two years in some provinces, with even longer wait times for services and treatments.

"Certainly we’re getting better, but there are significant challenges from province to province depending on where you live," he said.
Lake said there are promising developments in vocation training, where companies work with autism organizations to discover what an individual with autism is good at and then place them in appropriate careers.

He said Jaden loves anything that has to do with numbers and order, enjoys cooking and has a job at the library.

"So there are lots and lots of opportunities for people with developmental disabilities across the board, not just autism, to really contribute in those types of ways," he said.

Lake advises families who have a child with autism to not lose hope during the initial, early challenges.

"What I would say to new parents who have just had their kids diagnosed for the first time, is that it’s not nearly as overwhelming as it might seem," he said.

To mark World Autism Awareness Day this year, a number of notable landmarks including the Empire State building in the U.S. will be lit up in blue lights as part of the AutismSpeaks "Light it up blue" campaign.

Other landmarks that have been bathed in blue in the past include the pyramids in Egypt and the Opera House in Sydney, Australia. Sporting venues, concert halls, schools and organizations also participate in the event.

Last year, reports released by the National Epidemiologic Database for the Study of Autism in Canada and the U.S. Center for Disease Control and Prevention found that the number of children being diagnosed with autism has increased in at least three Canadian provinces and across the U.S.
While the increase in autism diagnosis is linked in part to wider and improved screening, the CDC warns that doesn’t tell the whole story.

"More people than ever before are being diagnosed with an ASD. It is unclear how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out," the CDC says on its website. "We believe the increase in ASD diagnosis is likely due to a combination of these factors."

[Andrew Kavchak]

Hi Folks,

Yesterday was one heck of a busy day around here in terms of relevant events. It seems that the federal government has developed and announced another national health-related strategy. This time dealing with prescription drugs.

Take a look at the outline in the press release…

http://www.ccsa.ca/2013%20CCSA%20Documents/CCSA-Prescription-Drug-Strategy-news-release-2013-en.pdf

Among the recommendations' objectives, my favourite one is:

"Develop or clarify legislation and regulations to reduce barriers to effective treatment and
prevent harms". That's interesting. Do you think they are referring to the adoption of a strategy that would involve changing federal AND provincial laws? Does this mean that the federal government will actually take steps to encourage (or "motivate" through other measures) the provincial governments to harmonize anything related to health? I wonder if Mr. Lake is aware of this development. Actually, based on the article below in a previous post, I suppose Mr. Lake is going to be getting credit for his imaginary leadership on this issue too.

From the press release:

Strategy Recommendations

The recommendations were developed around five streams of action: Prevention, Education, Treatment,
Monitoring and Surveillance, and Enforcement. In addition to the five streams, three other areas cut
across all streams and are important to this work: legislation and regulations, research, and evaluation
and performance measurement.*
The recommendations aim to:
• Prevent prescription drug-related harms to individuals, families and communities;
• Educate and empower the public and promote healthy and safe communities;
• Promote appropriate prescribing and dispensing practices among healthcare practitioners;
• Increase timely, equitable access to a range of effective treatment options throughout the
continuum of pain and addictions treatment;
• Identify effective, evidence-informed practices and policies and build upon them;
• Develop a standardized pan-Canadian surveillance system to improve our understanding of the
nature and extent of the harms associated with prescription drugs in Canada;
• Establish prescription monitoring programs in each province and territory to share information
about prescribing and dispensing practices across disciplines and jurisdictions on a timely basis
and take timely action;
• Ensure that law enforcement has adequate tools, training and resources to address the diversion
of prescription drugs;
• Engage industry, governments, regulatory bodies and others with a stake in the issue to join
forces, commit to specific recommendations, leverage existing resources and strengthen system
capacity to address the issue;
• Develop or clarify legislation and regulations to reduce barriers to effective treatment and
prevent harms;
• Conduct research to address knowledge gaps and promote strategies to deal with this important
issue;
• Engage industry in concrete, responsible actions that promote patient safety, improved patient
outcomes and risk mitigation; and
• Provide a contextual lens to First Nations, geographically remote, isolated and rural populations.

[Author]

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