[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

[Laurie Guerra]

Consider attending the public consultation happening today in Vancouver.   The Federal  government is consulting Canadians to help develop accessibility legislation for Canadians with disabilities.  We need all the voices from the “autism”  community that we can get.

Details can be found at :

http://www.esdc.gc.ca/en/consultations/disability/legislation/index.page

 

 

[Andrew Kavchak]

Hi Folks,

Well, guess what? After all these years, the things we have been saying over and over and over…have been confirmed in a new study.   How many times do we have to say it? …..Besides being the moral, ethical, legal, and (what should be the “politically”) correct thing to do, providing IBI/ABA also happens to be an investment that is in our collective economic interests.

But the politicians in charge of the public purse and the healthcare and education bureaucracies just don’t seem to “get it” or give a damn. Maybe they just forgot to renew their subscriptions to the “JAMA Pediatrics” journal.  Hopefully their children will give it to them for Christmas or something.

Cheers,

Andrew Kavchak (Ottawa)

From the Toronto Star

https://www.thestar.com/news/gta/2016/11/14/timely-autism-treatment-better-for-kids-taxpayers-study-finds.html
<h1 class=”article__headline” data-reactid=”91″>Timely autism treatment better for kids, taxpayers, study finds</h1>

<p data-reactid=”93″>Cutting wait times for autism treatment has long-term benefits for kids and is more cost-effective, study finds.</p>

By ANDREA GORDON Education Reporter

Mon., Nov. 14, 2016

Eliminating wait lists for intensive autism treatment is not only more effective for children who need it, but translates to taxpayer savings down the road, Ontario researchers have found.

Their study, published Monday in the journal JAMA Pediatrics, is the latest to find that timely access to treatment has long-term benefits for kids and is more cost-effective. They say it’s the first to model the economic effect of wait times.

“The longer that families have to wait, the less effective these services are and the less we get to reap those economic rewards,” said senior author Dr. Melanie Penner, a developmental pediatrician at Holland Bloorview Kids Rehabilitation Hospital in Toronto.

Using 2012 Ontario data, the researchers looked into the potential long-term impact of eliminating wait lists for intensive behavioural intervention (IBI) provided by the province. At the time, wait lists averaged 2.7 years, similar to what they were last spring.

They found that treating kids immediately without wait times resulted in cost savings of $53,000 for the province up until age 65. Their economic model found that removing wait lists also translated to savings of $267,000 for society, which was primarily because of children being able to live more independent and productive lives as a result of treatment.

Penner said the result is “pretty stunning” because improved health care policies usually come with higher costs, “and with this one we are actually getting cost savings.”

But it does require that the government “take the long view” on when they see the cost benefits, she said.

Based on the 1,700 children on Ontario wait lists in 2012, the study projected that eliminating wait times would have amounted to total savings of $90.1 million for the province, and $454.4 million for society. Costs for the province are associated with health and social services, while the larger societal costs are primarily related to caregiving, foregone wages and reduced productivity.

The numbers reaffirm that governments and society get the best return on investing in IBI when children get quick access to it, says Penner.

“The flip side of that is that with decreased access, the value of that investment goes down.”

While the data and study model are new, the link between timely service and better returns “is not new information — it’s something everybody has understood for a long time,” said Bruce McIntosh, president of the advocacy group the Ontario Autism Coalition.

While the study coincides with the province’s goal of reducing IBI wait times under its new autism program announced last spring, McIntosh notes it does not address the controversial policy that came with it — the decision that children age 5 and older are no long eligible for any IBI.

Toronto parent Angelina Palmisano said the findings don’t surprise her but added there are “unacceptable” delays in accessing most autism services, not just IBI, which means many children aren’t getting any help when it’s most beneficial to them and cost-effective for the province.

Her son Keith, 5, was not considered severe enough to qualify for IBI treatment, though he has a sensory processing disorder and developmental challenges that affect his fine motor skills and eating.

He has waited two years for provincially-funded applied behaviour analysis and needs occupational therapy, says his mother.

“Autism doesn’t go away,” says Palmisano. “If you have a diagnosis of autism in this province you should be looked after.”

University of Calgary researcher Jennifer Zwicker said while lifetime cost projections are tricky and subject to many assumptions, the Ontario researchers highlight the economic impact of children waiting for autism services.

“This study is saying that if you are waiting longer as a child who is developing, when you do get that IBI treatment it may be less effective and have less impact than if you got it earlier,” said Zwicker, director of health policy at the university’s school of public policy.

“It’s a good narrative on how we allocate resources does have an impact.”

[Sabrina Freeman]

Hello everyone,

Finally after two months of work, the FEATBC Discussion Board and website have been transferred and updated.

A huge Thank You to Beverley Sharpe who was the impetuous behind this project!

There are several updates that may be of interest to you:

1) We’ve updated the Sources of Info page to include a more complete bibliography on the state of the science in autism treatment;

2) All the initiatives of FEATBC over the past 20 years have been reorganized and archived for the new generation of parents who want to know the history of the struggle;

3) The Modified Checklist for Autism in Toddlers (M-CHAT) has now been linked to an online instrument that scores the screening;

4) All newspaper articles, newsmagazine articles, TV interviews and Radio interviews are now easy to access (for those of us who want to see how much we’ve aged!);

5) We are very proud of our Global Legal Decision initiative. We are in the process of cataloging important court decisions around the world so that, irrespective of jurisdiction, parents can gain access to relevant court decisions. At present, we have almost completed the English-speaking world and are currently scouring the globe for relevant judgments in other languages. This is a monumental task due to the number of legal jurisdictions within a country, and the number of countries worldwide; if you have a judgment that we have not found (and I’m sure there are many), please let us know!   We hope that this resource will help parents advocate for their child irrespective of jurisdiction by learning about decisions in countries with similar jurisprudence.

Check back every so often if you’d like to see worldwide progress.

Kind regards,

Sabrina

Note: For those of you who would like to take another swipe at the Auton case, there are now many court cases in the U.S. where in addition to educational lawsuits, parents have successfully sued private health insurance companies, public health departments. The private health insurance cases are already uploaded. The Health Department cases should be ready for viewing within the week.

 

[Sabrina Freeman]

Hello everyone,

Finally after two months of work, the FEATBC Discussion Board and website have been transferred and updated.

A huge Thank You to Beverley Sharpe who was the impetuous behind this project!

There are several updates that may be of interest to you:

1) We’ve updated the Sources of Info page to include a more complete bibliography on the state of the science in autism treatment;

Sources of Info

2) All the initiatives of FEATBC over the past 20 years have been reorganized and archived for the new generation of parents who want to know the history of the struggle;

Lobbying & Advocacy

3) The Modified Checklist for Autism in Toddlers (M-CHAT) has now been linked to an online instrument that scores the screening;

Diagnosis

4) All newspaper articles, newsmagazine articles, TV interviews and Radio interviews are now easy to access (for those of us who want to see how much we’ve aged!);

The Media

5) We are very proud of our Global Legal Decision initiative. We are in the process of cataloging important court decisions around the world so that, irrespective of jurisdiction, parents can gain access to relevant court decisions. At present, we have almost completed the English-speaking world and are currently scouring the globe for relevant judgments in other languages. This is a monumental task due to the number of legal jurisdictions within a country, and the number of countries worldwide; if you have a judgment that we have not found (and I’m sure there are many), please let us know!   We hope that this resource will help parents advocate for their child irrespective of jurisdiction by learning about decisions in countries with similar jurisprudence.

https://featbc.org/legal-issues/

Enjoy!

Sabrina

[Sabrina Freeman]

Hello everyone,

Finally after two months of work, the FEATBC Discussion Board and website have been transferred and updated.

A huge Thank You to Beverley Sharpe who was the impetuous behind this project!

There are several updates that may be of interest to you:

1) We’ve updated the Sources of Info page to include a more complete bibliography on the state of the science in autism treatment;

Sources of Info

2) All the initiatives of FEATBC over the past 20 years have been reorganized and archived for the new generation of parents who want to know the history of the struggle;

Lobbying & Advocacy

3) The Modified Checklist for Autism in Toddlers (M-CHAT) has now been linked to an online instrument that scores the screening;

Diagnosis

4) All newspaper articles, newsmagazine articles, TV interviews and Radio interviews are now easy to access (for those of us who want to see how much we’ve aged!);

The Media

5) We are very proud of our Global Legal Decision initiative. We are in the process of cataloging important court decisions around the world so that, irrespective of jurisdiction, parents can gain access to relevant court decisions. At present, we have almost completed the English-speaking world and are currently scouring the globe for relevant judgments in other languages. This is a monumental task due to the number of legal jurisdictions within a country, and the number of countries worldwide; if you have a judgment that we have not found (and I’m sure there are many), please let us know! We hope that this resource will help parents advocate for their child irrespective of jurisdiction by learning about decisions in countries with similar jurisprudence.

https://featbc.org/legal-issues/

Check back every so often if you’d like to see worldwide progress.

Kind regards,

Sabrina

Note: For those of you who would like to take another swipe at the Auton case, there are now many court cases in the U.S. where in addition to educational lawsuits, parents have successfully sued private health insurance companies, public health departments. The private health insurance cases are already uploaded. The Health Department cases should be ready for viewing within the week.

[Sabrina Freeman]

Hello everyone,

Finally, after two months of work, the FEATBC Discussion Board and website have been transferred and updated.

A huge Thank You to Beverley Sharpe who was the impetuous behind this project!

There are several updates that may be of interest to you:

1) We’ve updated the Sources of Info page to include a more complete bibliography on the state of the science in autism treatment;

https://featbc.org/sources-of-info/

2) All the initiatives of FEATBC over the past 20 years have been reorganized and archived for the new generation of parents who want to know the history of the struggle;

https://featbc.org/lobby-advocacy/

3) The Modified Checklist for Autism in Toddlers (M-CHAT) has now been linked to an online instrument that scores the screening;

https://featbc.org/diagnosis/

4) All newspaper articles, newsmagazine articles, TV interviews and radio interviews are now easy to access (for those of us who want to see how much we’ve aged!);

https://featbc.org/the-media/

5) We are very proud of our Global Legal Decisions initiative. We are in the process of cataloging important court decisions around the world so that, irrespective of jurisdiction, parents can gain access to relevant court decisions. At present, we have almost completed the English-speaking world and are currently scouring the globe for relevant judgments in other languages. This is a monumental task due to the number of legal jurisdictions within a country, and the number of countries worldwide; if you have a judgment that we have not found (and I’m sure there are many), please let us know!  We hope that this resource will help parents advocate for their child irrespective of jurisdiction by learning about decisions in countries with similar jurisprudence.

https://featbc.org/legal-issues/

Check back every so often if you’d like to see worldwide progress.

Kind regards,

Sabrina

Note: For those of you who would like to take another swipe at the Auton case, there are now many court cases in the U.S. where in addition to educational lawsuits, parents have successfully sued private health insurance companies, and public health departments. The private health insurance cases are already uploaded. The Health Department cases should be ready for viewing within the week.

 

[Nancy Walton]

Andrew, I think you said it well.  That is a theme we can each push at these consultants.  We should all send the same message.

[Andrew Kavchak]

Hi Folks,

As you may be aware, the Federal government has suggested it is committed to developing new planned accessibility legislation to “promote equality of opportunity and increase the inclusion and participation of Canadians who have disabilities”. 

In developing this new legislation, the Government of Canada is consulting Canadians both in person and online. The consultation process will run until February 2017, and includes a variety of mechanisms, including: online surveys, public consultations, etc. 

More information on the consultations can be found here: 

http://www.canada.ca/Accessible-Canada

Consultations are planned for every province and territory, beginning in September 2016 until February 2017 (list of dates and locations below).

Apparently, the in-person public consultations will ask participants the following three questions:

1) What are the main barriers to accessibility that Canadians with disabilities face?

2) What would it take to fix those barriers? 

3) How can we change attitudes in Canada to better include and respect people with disabilities? 

I wonder whether they consider the lack of access to healthcare and IBI/ABA through Medicare to be an “accessibility” issue?  

Public Consultations – Date and Location 

 

Wednesday, October 12th	Ontario	Thunder Bay
Thursday, October 13th	Alberta	Calgary
Thursday, October 20th	New Brunswick	Moncton
Thursday, November 3rd	Newfoundland	St. John’s
Monday, November 7th	British Columbia	Victoria
Thursday, November 10th	Quebec	Québec City
Wednesday, November 16th	Quebec	Montreal
Saturday, November 26th	British Columbia	Vancouver
Wednesday, November 30th	Ontario	Ottawa
Thursday, December 8th	Prince Edward Island	Charlottetown
Friday, December 9th	Nova Scotia	Halifax
Wednesday, February 8th	Ontario	Toronto

[Andrew Kavchak]

Hi Folks,

I apologize for the mess in the previous post. Sometimes one can “copy and paste” and things work out…and other times, well, something else comes out.

Cheers,

Andrew

[Andrew Kavchak]

Hi Folks,

The CBC reported a few days ago that the provincial Premiers asked the Prime Minister for a meeting to discuss health care funding.  It sounds to me like an opportunity to raise an issue….we have an elephant in the room here that they are pretending does not exist!  I wrote this letter to one newspaper…
<p id=”yui_3_16_0_ym19_1_1475368851843_2912″ style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;”>Dear Editor,</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2818″ style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>The provincial Premiers are reported in the media to have collectively written to the Prime Minister requesting a meeting on heath care funding before the first ministers meet to discuss climate change this fall. At issue is the amount of health care transfer payments from the federal government. The last Liberal government of Paul Martin negotiated a “Health Care Accord” back in 2004 which involved transfers of additional billions of dollars from the federal government, for which the provinces agreed comply with specified service standards regarding a number of medical procedures. That agreement expired in 2014 and the Tories were not interested in negotiating a new one.  It’s time is overdue.  But there was one thing missing in the Accord last time that needs to be addressed: autism.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>Until the cause and cure are found for this neurological disorder which can be devastating in severe cases, the evidence-based treatment of Intensive Behaviour Intervention therapy (based on principles of Applied Behaviour Analysis) must be considered a health issue and its provision covered by Medicare from coast to coast. Regrettably, that is not the case.  In some provinces which offer IBI/ABA treatment, like Ontario, it is provided by Community Services departments which have a lack of resources and expertise, and a plagued with unconscionable waiting lists and inexplicable age “cut-offs” (typically at age six). This discrimination in our public health care system against Canadians affected by this disorder must cease.  Kids don’t get to pick their disease and their parents don’t have the option of not paying their taxes.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>The federal government and the provinces needs to stop ignoring the Standing Senate Committee on Social Affairs 2007 report “Pay Now or Pay Later: Autism Families in Crisis” and implement its recommendation to develop a funding formula to ensure that autism treatment is available to Canadians who need it through our public health insurance system. This request by the Premiers to have a health care funding meeting with the Prime Minister provides an opportunity to address and resolve this outstanding issue that has been a huge challenge for thousands of Canadian families.</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”>Andrew Kavchak</p>
<p id=”yui_3_16_0_ym19_1_1475368851843_2819″ dir=”ltr” style=”-webkit-padding-start: 0px; margin: 0.1em 0px; padding: 0px; color: #000000; font-family: HelveticaNeue, ‘Helvetica Neue’, Helvetica, Arial, ‘Lucida Grande’, sans-serif; font-size: 12px;” data-setdir=”false”></p>

[Author]

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