[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,

So April 2 was Autism Awareness Day.

In the House of Commons, Mike Lake, MP made the following statement on March 24 (before the House rose for another one of the endless "breaks")

Autism Awareness

Hon. Mike Lake (Edmonton—Wetaskiwin, CPC):

Mr. Speaker, April 2 marks World Autism Awareness Day and 18 years since my son Jaden was diagnosed.

Life with Jaden has not exactly been as we planned. He has never made the honour role or attended university or heard his name called at the NHL draft. In no way is this a disappointment. Those were simply not the right plans for Jaden.

To measure his value by IQ or income or goals and assists would be to completely misunderstand who he is. Jaden has a truly rare and beautiful nature, an immeasurable blend of honesty, authenticity, innocence and genuine love. It is an indescribable joy to witness him grow up with a childlike vulnerability and sense of wonder that the rest of us, sadly, lose over time.

Life with Jaden may not be what we had
planned, but we do not celebrate any less; we just celebrate different things. It is a lesson learned through experience and one I would not trade for the world.
_________________

While all of us parents can sympathize with Mr. Lake's love of his child, his annual message is one that could be delivered by any one of us. However, he, not we, is an MP, with the corresponding access behind closed doors to those with power to help improve the lives of people with autism and their parents. So when he speaks, he could tell the Parliamentarians, and all Canadians, of the challenges faced by those in the community, the injustice and lack of fairness in terms of access to healthcare, etc. and what needs to be done, and what he is prepared to do about it. Instead, nothing of the sort. Just more joy of being Jaden's dad, which we all get.

In sharp contrast, take a look at this statement made on the same date in the Senate by Senator Jim Munson:
__________________________
World Autism Awareness Day

Hon. Jim Munson: Honourable senators, I hope you mark on your calendars that April 2 is World Autism Awareness Day. We'll be on our break at the time; that's why I'm speaking today.

We are fortunate to have a day officially designated to learn about and demonstrate our respect for those living with autism. The legal and official recognition of that day happened right here in the Senate, and I'm very proud of what we accomplished together, an example of senators doing the right thing for our country.

In 2002, it was estimated that one child in 150 had autism. Today, the disorder affects an estimated one in 68. That's an increase of 120 per cent. Meanwhile, we hear reports of children waiting years to receive autism support services, often so long that they become too old to benefit fully from those services.

This was a headline of a news story issued only last November: "Over 16,000 children on Ontario wait lists for autism services: More kids are waiting than are getting support."

Recently, the Ontario government pledged millions for autism services, but I remain concerned it will not reduce those waiting lines. Our 2007 Senate report, Pay Now or Pay Later — Autism Families in Crisis, underscored the need for a national ASD strategy. A strategy would mean the federal government engaging all levels of government in building a national infrastructure for research and surveillance, for supporting all people with autism within their communities and for providing funding arrangements to meet their needs.

In recent years, the federal government has brought about a number of advancement, and I've always applauded the previous federal government for bringing them in. Last spring, for instance, it set aside $2 million to create and support the Canadian Autism Partnership to achieve improvements in priority areas. There are also disability tax credits and employment programs for adults with autism, such as Ready, Willing and Able, but the autism community needs more, much more.

It would have been nice to see something concrete for people with autism in this week's federal budget. I know advocates have spoken to the relevant cabinet ministers, and I am hopeful we will soon see more support.

At the very least, there is a federal responsibility for Aboriginal children and adults with autism. I sincerely hope that with the new money for Canada's indigenous community, the leaders of that community don't forget those with autism.

Autism has become so prevalent that it is clearly not about any particular social group, nor is it an issue with a political bent. It is a national issue. We're all in this together. What we need is a strategy that will guide us all in working collectively in the interests of people on the spectrum and in the interest of our society as a whole.

In this respect, please also mark on your calendars April 18. It is the Monday after the week of our return. It is the day when CASDA, the Canadian Autism Spectrum Disorders Alliance, holds its second annual autism summit. Senator Housakos and I, along with CASDA, and certainly MP Mike Lake, will be attending that summit and still pushing for what we deeply care about. There will be autism advocates from all the across the country.

The following day, April 19, there is a noon-hour rally on the Hill called Autism on the Hill. It is hosted by my friend Suzanne Jacobson, a grandmother of two boys with autism. Suzanne is a tireless advocate whose Ottawa programs called QuickStart and KickStart are being replicated across the country.

So, honourable senators, as we head into this Easter weekend, please think of her, her work and her family. And please be there on the Hill on April 19 for her and her family and for those families across the country.

Personally, I will never rest until we have a national autism spectrum disorder strategy. Thank you, honourable senators.

[Andrew Kavchak]

Hi Folks,

Well, as some of you may know, we have a provincial government here in Ontario that is, at least to me, a complete mystery. I'm never really sure what they are doing, although there always seems to be something in the news about the provincial deficit, etc.

Anyways, when cuts have to made, it is always easy to take from the weak and vulnerable. Especially those who can't speak up for themselves. Like disabled kids.

So…from the 680 News website, there is this gem of information…
http://www.680news.com/2016/04/02/autism-advocates-react-to-latest-funding-changes/

Autism advocates react to latest funding changes

Children with Autism who are over five years old will no longer be eligible for Ontario’s intervention program, impacting thousands of kids in the province.

The Ministry of Children and Youth Services will now only offer Intensive Behavioural Intervention (IBI) to diagnosed kids under five years old, saying this will cut the wait list times from two years to eventually six months.

“It’s created significant pressure on the system where now we have far more children waiting for services than children currently receiving services,” said Tracy MacCharles, Minister of Children and Youth Services.

Older kids will instead be shifted to the Applied Behaviour Analysis program, where they won’t be receiving as much support as they would be under IBI.

Regardless, while families with younger children are receiving early intervention, it’s those with older kids who are feeling left behind.

“It’s bittersweet,” said Margaret Spoelstra, Executive Director of Autism Ontario. “It’s absolutely heartbreaking to hear when you’ve been waiting for something and then to know that you’re no longer going to be able to participate in that program.”

Those who are currently on the wait list or in the IBI program, but no longer eligible under these new changes, will be given a onetime payment of $8,000 to go towards treatment costs.

“That’s an amount that will get them started but it wouldn’t be the same without being in the IBI program,” Spoelstra said.

The province will be mailing out 30,000 letters in the coming week to the families who are affected by this change.
___________________

Margaret Spoelstra has been the Executive Director of the Autism Society of Ontario for a long, long time. She won a Governor General's Order of Canada designation last year. I think it was for her outstanding work representing the autism community to the government. Or was it for representing the government to the autism community? I can't remember. Anyway, I am sure she will be promoted within the order in due course as her work will likely be perceived as deserving more recognition.

When my son was diagnosed, there was a waiting list of several years to get access to either funding or therapy services, and there was an age six cut off. Then there was a court case, appeals, and a government that said that it was going to remove the age six cut off, but, in reality they often came up with other grounds upon which to withdraw support. Now, if I get the story straight, the cut off will be age five? Sounds like we're going backwards. If this does not show the federal Liberals the need for legislative action, then what will?

[Andrew Kavchak]

Hi Folks,

The latest CDC report on prevalence rates just came out…still 1 in 68.

http://www.cdc.gov/mmwr/volumes/65/ss/ss6503a1.htm

Cheers,
Andrew Kavchak (Ottawa)

[Debra Antifaev]

Hi Everyone,

For years we have been lobbying/begging/fundraising to have Autism treatment covered under Medicare. The lack of treatment funding has been an incredible financial burden for many, and has even bankrupted some families, thereby making this truly a two-tiered system, with access to treatment only available to those lucky enough to be able to provide it.

We have an opportunity to change this!

The following resolution, calling on the Federal Government to make ABA treatment universally accessible and covered under Medicare, was developed in collaboration with Medicare for Autism Now! Society and the South Surrey White Rock federal Liberal riding executive.
Thanks to Paula Williams, the organizational Chair, and her riding colleagues! They presented this resolution at the Liberal Party of Canada’s BC Policy convention in Victoria. 600 delegates voted on 69 resolutions with our resolution receiving the SECOND highest votes! This moves it to the Liberal Party’s National Convention, in Winnipeg, at the end of May!
Never before has Autism treatment been on a policy agenda of ANY federal political party, let alone the governing party!

What can you do??

• Contact your federal liberal riding association’s president and policy chairperson (each riding has their own website. Google your riding plus “liberal.ca”
• Send them a copy of the resolution and ask them to instruct their delegates, going to the Winnipeg convention, to support it.
• If you live in a Liberal held riding, contact your MP and ask that they do the same.
• Forward/email the resolution to your friends, family, colleagues across Canada and ask if they will also contact their Liberal riding associations and MPs.
• Email mfanow@gmail.com and let them know who has been contacted.

The Resolution follows (you can cut and paste this from the Chat, or go to the MFAN website or facebook page for a copy and a list of Frequently Asked Questions about Autism and ABA treatment):

S3 – Medicare Coverage for the treatment of Autism

WHEREAS the rate of autism spectrum disorder (“ASD”) among Canadian children is now a shocking 1 in 68, constituting a national epidemic and, for reasons unknown, continues to rise;

WHEREAS Canada’s “universal” health care system currently excludes from coverage the recognized, effective, science-based treatment for ASD called Applied Behavioural Analysis (“ABA”), despite the deplorable incidence of this neurological condition and advocacy from numerous citizen groups;

WHEREAS the BC Supreme Court, in 2000, found that ABA was “medically necessary treatment” and that “there were no effective competing therapies”, a decision which was upheld on appeal by the BC Court of Appeal and the Supreme Court of Canada;

WHEREAS funding in Canada respecting ABA for ASD currently is not only grossly insufficient, it varies widely between provinces;

WHEREAS the lifetime cost of an individual receiving inadequate treatment (or none) for ASD is reliably estimated between $2.4 – $3.2 million, excluding indirect costs to society; and

WHEREAS the US Government requires all states to provide treatment for ASD as part of state-wide Medicaid programs and 43 out of 50 states require private health insurers to provide coverage for ASD treatment;

BE IT RESOLVED the Canada Health Act be amended to include Medicare coverage for ABA for ASD or, alternatively, the Government of Canada work with all provincial and territorial governments to ensure inclusion of ABA for ASD within their respective Medical Services Plans.

BE IT FURTHER RESOLVED the Government of Canada provide funding to each province and territory to fully cover the costs associated with the provision of ABA treatment of ASD.

South Surrey-White Rock

[Stella Li]

Hi everyone,

Tax season is approaching. Whether you are new to the world of autism or you’re an experienced parent, you may like to know how to maximize your tax benefits by getting the most updated information. It may be overwhelming but we are here to help.

In our upcoming ASBC Burnaby Support Group meeting, David Taylor will present on “Autism and Tax”

Date: February 12, 2016 (Friday)
Time: 10am- 12noon
Place: Studio, #301- 3701 East Hastings, Burnaby

Speaker: David Taylor

David Taylor is the parent of a child with autism and has been administering a home based ABA program for 10 years. Dave has done extensive research into the financial side of managing an ABA team and has gathered information from his own experiences and feedback from other parents. He has been holding his tax talk for several years and has worked with many families to simplify disability credits.

Topic: “AUTISM AND TAX”

Some of the topics that Dave will cover during this meeting are:
Disability Tax Credit
Child Disability Benefit
Medical Expenses
Federal tax credits and tips for tax time
This talk is applicable for children on the autism spectrum. We would also like to encourage parents to bring their own experiences and questions to share.

Coffee/tea and refreshments will be provided.

Please RSVP to shui@autismbc.ca ASAP.

[Sherri Brown]

Medicare for Autism Now invites you to an evening benefitting One in 68 Canadian children with autism.

We are holding an evening fundraiser on February 19, 2016, at the Century Plaza Hotel at 1015 Burrard Street, Vancouver, from 6pm. The evening features a silent and live auction, libations, Juno award winning entertainment, and much more.

Tickets can be purchased at: http://www.medicareforautismnow.eventbrite.ca

We hope to see you there on February 19! Please also share with your networks. Thank you!

Board of Directors,
Medicare for Autism Now

[Andrew Kavchak]

Hi Folks,

Would it not be an interesting development in Canada if politicians seeking the leadership of their parties were to unveil their autism plans? Or what about party leaders unveiling such autism plans early in a national election campaign?

Well, kudos to Hillary Clinton…

https://www.hillaryclinton.com/briefing/factsheets/2016/01/05/hillary-clintons-plan-to-support-children-youth-and-adults-living-with-autism-and-their-families/

[Andrew Kavchak]

Hi Folks!

Merry Christmas and Happy New Year!

Here is something very nice from The Hill Times (which is a very popular weekly political newspaper that is widely-read around Ottawa).
http://www.hilltimes.com/opinion-piece/legislation/2015/12/24/all-i-want-for-christmas-is-a-national-autism-strategy/44639

All I want for Christmas is a national autism strategy

We’ve waited almost a decade. Now is the time for the federal government to bring together the brightest minds in the country on the issue and enact a federal strategy to give our kids with autism the services they need to survive and thrive in communities across the country.

By KATHLEEN O’GRADY |
Published: Thursday, 12/24/2015 12:00 am EST
Last Updated: Thursday, 12/24/2015 8:44 am EST
Over a year ago, I was invited to celebrate World Autism Awareness Day on Parliament Hill. It was attended by a dozen or more Senators from both major parties, political staffers and invited guests mostly from an assortment of autism non-profit organizations. I expected a somewhat predictable ‘feel good’ event about how far we’ve come and how far we have still to go.

But an hour later there weren’t many dry eyes in the chamber.

It turns out, many of the politicians who decided to join the event that day had personal experiences with autism. One Senator spoke at length of his daughter who struggles to get adequate services for his grandchild with autism, and how challenging it has been–economically, physically and emotionally—for the whole family. He cried openly.

Another Senator spoke of a family she knows that is struggling with long wait times for essential services, such as speech or behavioural therapy. More than one participant spoke of the difficult choice families have made to uproot from jobs and life-long communities and move across the country to Alberta or British Columbia where autism services are often more readily available and flexible, particularly if a family happens to have more than one child on the autism spectrum.

Others spoke of the economic burden of pursuing private therapies—funded out of pocket, often in the tens of thousands of dollars per year—resulting in refinancing homes or selling them altogether just to get their child with autism the basic supports they need to learn and thrive.

What became clear that day is something I’ve heard autism champion Senator Jim Munson say before: autism doesn’t affect Liberals or Conservatives or NDPers. It’s an equal opportunity neurodevelopmental disorder that affects Canadians across the political spectrum and clear across the country.

What was also clear that day—and from a number of reports since—is that autism families in Canada are struggling, that diagnosed cases of autism are on the rise, and that most provinces are not able to keep up with necessary services.

According to a recent survey from the Canadian Autism Spectrum Disorders Alliance (CASDA), almost three quarters of parents of preschoolers in Canada with autism wanted, but did not receive, early intensive behavioural intervention for their child—one of few interventions for autism with solid peer reviewed evidence.

A similarly troubling report, released last month from the Ontario Auditor General, reveals that in some jurisdictions in the province, there are more children waiting for autism services than receiving them, with more than 16,000 children on wait lists that continue to balloon.

This has largely been my own experience in Ontario. Despite being a proud advocate of our universal health care system, which is intended to serve those in need and not just those with the ability to pay, I found it failed me when I needed it most. When my son did not meet traditional developmental milestones, I discovered I would have to wait years to get a diagnosis in the public health system. We paid for a private diagnosis instead, but then we still had to wait more than two years for publicly funded behavioural therapy, which was provided to us for only six months.

It was all too little, too late. Like so many other families affected by autism, instead of just waiting, we paid for our son’s essential health services privately—and he blossomed as a result. We are one of the lucky ones who could afford to do so, though not without struggle.

Dire headlines on gaps and lacks in autism services are recurrent in the media from multiple regions across the country; you can almost recycle the headlines and simply rotate the province named. It’s not an exaggeration to say we have an autism services crisis in Canada.

So what can be done? Plenty.

Evidence shows that proper health and educational supports for those affected by autism pay off. Early intervention is key and heads off more expensive and extensive supports that are needed later in life if early intervention is not provided. It makes economic sense, in other words, to provide autism services early.

Kids with autism are not lost causes—they are full of potential. We are failing them.

The last federal government made a good start establishing an Autism Spectrum Disorder Working Group to bring together those working on the issues across the country to discuss key concerns and share best practices. But much more federal support is required to make things better—now—for Canadian families affected by autism.

For starters, the new Liberal government could dust off the excellent cross-party Senate report—aptly titled Pay Now or Pay Later: Autism Families in Crisis from 2007 and get to work. It’s number one recommendation? A comprehensive national autism strategy.

We’ve waited almost a decade. Now is the time for the federal government to bring together the brightest minds in the country on the issue and enact a federal strategy to give our kids with autism the services they need to survive and thrive in communities across the country. It’s not only the right thing to do, it’s the smart thing to do.

Kathleen O’Grady is a research associate at the Simone de Beauvoir Institute, Concordia University, the managing editor of EvidenceNetwork.ca and a mother of two sons, one with autism.

__________________________

On a related note, as some of you may recall, back in 2004-05-06 after my own son was diagnosed, I frequently went to Parliament Hill and protested with a sign calling for healthcare coverage for autism treatment. During that time I met numerous politicians, including Senator Jim Munson, and we managed to raise the profile of autism issues.

Now, a decade later and with a new government on the Hill, I have decided to resume my lunch-time protests. I got the protest permit and resumed the activity just before the House rose for the holiday break. The politicians will return in late January…and so will I.

Cheers!
Andrew Kavchak

[Andrew Kavchak]

Hi Folks,

Well, the new government in Ottawa has taken its seat in the saddle and just announced their agenda in the Speech from the Throne.

http://speech.gc.ca/sites/sft/files/speech_from_the_throne.pdf

One sentence seems to potentially be of relevance to our community: "And to support the health and well-being of all Canadians, the Government will begin work with the provinces and territories to develop a new Health Accord."

As you may recall, back in September of 2004, the Martin government convened a meeting with the Premiers that was supposed to put Medicare on stable footing for 10 years. The Accord involved the feds giving the provinces something like $40 billion, and the specific identification of some medical services and the target service delivery time frames, etc.

At the time, a few parents and myself protested outside the venue and managed to get our picture in the Globe and Mail with an article saying that the autism community was being discriminated against in Medicare and we wanted "in". Well, it sounds like this may be another chance to raise the issue.

Perhaps the leaders of the autism community should contact all the governments and persons at the provincial and federal levels who will be involved in this exercise and lobby them to use this new Health Accord opportunity to address the autism deficit in Medicare, etc.

[Andrew Kavchak]

Hi Folks,

Well, this is interesting…the CBC is actually reporting on the position of political parties with respect to autism policies (supports, supports, supports, etc.) in a provincial election.

http://www.cbc.ca/news/canada/newfoundland-labrador/autism-support-nlvotes-1.3327797

[Author]

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