[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

[Barbara Rodrigues]

Thanks for posting that Andrew. The part that irks me the most is

"The common therapy for children with autism, applied behavioural analysis, is only 13 per cent effect, Marino said, so it is important
to examine other therapeutic measures."

Where is her data on this statement – 13%??? ABA is (if done correctly is 100% affective in treating behaviors – teaching new skills – helping kids achieve)!! No it's not a quick fix and for many kids it's not 'recovery' – but for a kid like mine -without ABA he would no longer be in our home. Jemma – you are so right – it is such disservice to our kids and treatment when statements like this get out there. ABA is as our consultant always says 'damn hard work' but it works!!

While I am all for research -let's put our money into what science tells us works now and get treatment -full treatment for our kids now. Where's the funding for that?

Barbara

[Jemma Lee]

"I will still hold the government's feet to the fire," she said.

This is so sad.

Unfortunately, parents are parents' biggest hindrance.

Jemma

[Andrew Kavchak]

It appears that there is some confusion out there…

From: http://www.zwire.com/site/news.cfm?newsid=19427957&BRD=1998&PAG=461&dept_id=221583&rfi=6

Advocate lauds throne speech autism pledge

Paul Galinski — Peak Reporter
03/27/2008

Provincial government creating centre to help children and to provide parental support

BC's throne speech commitment to autism research has elated Powell River autism advocate Sheri Marino.

"I am ecstatic," she said. "I went through hell fighting government for seven years. I believe my fighting has been the turning point for the government to put forward an autism plan in the throne speech."

In the throne speech, Steven L. Point, Lieutenant-Governor, said: "A new centre for autism education and research will be developed. It will provide a residential environment for children with autism and create a national hub for research and a centre for parental supports.

"The causes of childhood afflictions such as fetal alcohol spectrum disorder, attention deficit hyperactivity disorder, and autism spectrum disorder, remain poorly understood. This legislature will be asked to approve major investments aimed at strengthening our ability to prevent and treat such conditions."

Marino said the autism centre will conduct a spectrum of research. "This is huge for kids," she said. "The provincial government is opening up and looking for solutions. It's a huge step in the right direction. It's a huge opportunity to band together and work toward the best interests of kids."

Marino said she was flabbergasted to hear the announcement because she never expected it to come out of a throne speech. "It looks like solid support from the provincial government but I will still hold the government's feet to the fire," she said. "I am quite well known in Victoria."

Marino said she is still waiting to see the implications of the throne speech announcements. She has been in touch with Premier Gordon Campbell and the health minister to receive details about the ramifications of the provincial government's commitment to budget for autism research.

The common therapy for children with autism, applied behavioural analysis, is only 13 per cent effect, Marino said, so it is important to examine other therapeutic measures.

"There is a need to look at different kinds of therapies," she said. "I want people to look at what I have done with my son. He has become more communicative and has improved his social and behavioural skills. His progress has been amazing through the methodologies that have been applied during his life. The sky is the limit if the right support is received.

"British Columbia is so far behind some of the other provinces in research and parental support. We are talking about kids here, not faulty equipment."

Marino said a support group for parents and relatives of autistic children scheduled for early this month did not proceed. Nonetheless, she is planning to work toward the creation of a group.

"Inside the heart of every child is a gift so precious just waiting to be drawn out," she said.

[Super Dad]

http://www.un.org/News/briefings/docs/2008/080320_Autism.doc.htm

PRESS CONFERENCE BY PERMANENT MISSION OF QATAR ON FIRST WORLD AUTISM AWARENESS DAY

Building on his country’s well-known commitment to protecting and promoting the rights of persons with disabilities, Nassir Abdelaziz Al-Nassir, Permanent Representative of Qatar, today announced his delegation’s intention to commemorate the first World Autism Awareness Day by convening at United Nations Headquarters an expert panel on coping with the neurological disorder.

He said at a Headquarters press conference that, on the afternoon of 2 April, the Permanent Mission of Qatar, in collaboration with the World Health Organization (WHO) and Autism Speaks, an advocacy organization for individuals with autism and their families, would sponsor a panel discussion on “Challenges, Responsibilities, Actions”, to raise awareness about the urgent health crisis, which was now the world’s fastest growing developmental disability.

Alongside representatives of the event’s main sponsors, the panellists will include other eminent personalities from Brazil, the World Autism Organization, the Shafahla Centre in Qatar, Al-Jazeera, and Colombia Presbyterian Hospital. Mr. Al-Nasser, who was joined at the press conference by Alya Ahmed S.A. Al-Thani, Counsellor at the Permanent Mission of Qatar, also announced that an art exhibition would held in the East Lobby of the Headquarters building immediately following the panel discussion.

He said that, recognizing the current lack of effective means to prevent autism, the paucity of effective treatments and the absence of a cure for the complex neurological disorder, Qatar had been instrumental last year in pushing through a draft resolution in the General Assembly to galvanize global efforts to address the emerging health issue. The 192-member Assembly had adopted the text unanimously, designating 2 April as World Autism Day, and encouraging all Member States to take measures to raise awareness of the disorder.

Today, the Permanent Representative said that autism, a brain disorder which manifests during the first three years of a child’s life, interferes with the ability to understand what is seen, heard and touched. Its hallmark feature is impaired social interaction. While autism has a tremendous impact on children worldwide, as well as families, schools and social service institutions, it has thus far received only passing attention and even less focused international action. “Autism is not recognized as a disorder, which in turn hampers proper diagnosis, needed research, early behavioural intervention and even adequate treatment.”

Calling on all journalists present to join the global campaign to help raise awareness, and expressing the hope that the 2 April event would provide a platform for national-level action, he went on to say that his delegation’s initiative was guided by the dedicated attention of Her Highness Sheikha Mozah Bint Nasser Al-Missned, First Lady of Qatar. “Through her deep commitment and inspiring vision, Qatar has improved and enhanced the lives of children with disabilities, as well as those with other special needs.” She had diligently promoted the mainstreaming of the rights of persons with disabilities into the wide development agenda.

Responding to questions, Ms. Al-Thani said Qatar had settled on the 2 April date during negotiations on the text last year, when delegations noted that civil society groups around the world held events to raise awareness about autism during the month of April. “We didn’t want to just invent something,” she added.

[Andrew Kavchak]

Hi Folks,

As many of you know by now, the United Nations declared Wednesday, April 2, 2008, to be "World Autism Day". This provides our community in every neighbourhood and around the world with a wonderful opportunity to "raise the flag" and, to use former Cold War lingo, "agitate".

It also provides the media with a good reason to broadcast or print some sort of reports or documentaries.

Finally, it also provides governments with opportunities to not only say how the future will be different from the past, but also to outline what concrete steps they will take, and when. April 2 obviously provides a great symbolic day to take step 1.

However, realistically speaking, does anyone expect any government in Canada to take advantage of World Autism Day to actually say, or more importantly, do, anything meaningful and memorable?

I suspect many are waiting with baited breath to be surprised. As we inevitably approach April 2, let's have a countdown. Today is Wednesday, March 26. April 2 is exactly one week away! Let's all say it out loud together folks! Seven!

[Andrew Kavchak]

Here is the runner's website…

runthedream.ca

See the "purpose" of the run, etc…includine the "convince the Governments" part…

[Andrew Kavchak]

Hi Folks,

A while ago a father of a teenager with autism in Toronto risked his own health and walked to Ottawa through awful snow storms to raise awareness of the need for a National Autism Strategy.

And now…

March 26, 2008
THE TELEGRAM (ST. JOHN'S)
PAGE: A2

And he's off!

LLUS: Seen here at the Terry Fox monument at St. John's harbour Tuesday morning, marathon runner Jonathan Howard (left) began his cross-Canada "Run The Dream" campaign in hopes of raising $2.5 million to benefit children affected by autism spectrum disorder (ASD). He hopes to complete his eight-month solo run of 9,000 km in Victoria, B.C., by Nov. 21 after crossing 10 provinces and visiting more than 650 communities on his trek. Howard, 24, is a resident of Mississauga, Ont., and a McMaster University alumnus. Here he presents St. John's Port Authority director of business development, Bob McCarthy, with an official run toque to commemorate the start of his run from St. John's.

– Photo by Joe Gibbons/The Telegram

[Jemma Lee]

It sounds like junk food and bicycle rides are dangerous enough for a national strategy, but autism is too insignificant to be mentioned.

You can see the report here:
http://www.hc-sc.gc.ca/hl-vs/pubs/child-enfant/advisor-conseillere/index_e.html

Jemma

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http://www.medbroadcast.com/channel_health_news_details.asp?news_id=14811

Canada needs national strategy to prevent injuries in kids and youth: report

Mar. 25, 2008

Provided by: The Canadian Press
Written by: Anne-Marie Tobin, THE CANADIAN PRESS

TORONTO – Canada should have a national strategy to prevent injuries in children and youth, says a report commissioned by Health Minister Tony Clement and released Tuesday.

"Preventable injuries is the No. 1 killer of kids in this country," says Dr. Kellie Leitch, who wrote the report after being asked to review programs, identify gaps and come up with new initiatives to improve the health of children and youth.

"I was astounded with how many parents agreed with me, how many parents knew exactly what needed to be focused on for their kids."

The paper, entitled A Report by the Advisor on Healthy Children and Youth, also calls for improvements in mental-health services and setting targets to reduce the rate of childhood obesity from eight per cent to five per cent by 2015.

Canada isn't doing as well as it could in these areas, the report argues.

Among 29 nations of the Organization for Economic Co-operation and Development, it notes that Canada ranks 22nd when it comes to preventable childhood injuries and deaths, 27th in childhood obesity and 21st in child well-being, including mental health.

In a letter that accompanied her report to the minister, Leitch said Canada is doing "surprisingly poorly" in these areas when compared to other OECD countries.

Leitch is calling for a wait time strategy to make sure children with mental problems are cared for in a timely matter.

"The earlier these children are seen, the higher the likelihood that they'll lead productive normal adult lives," she said in an interview.

In a statement, Clement said he welcomed the report and looked forward to reviewing it.

Leitch was appointed last March, and spent the first part of her mandate travelling across the country and meeting with parents and people in organizations that are related to children and youth health.

She reviewed about 500 documents, and had responses from more than 7,200 parents to an online questionnaire.

"It's really a bringing together of what Canadian parents, children and people in the child health field believe is the direction that the government of Canada should be going," said Leitch, who is a pediatric orthopedic surgeon in London, Ont.

Leitch recommends a longitudinal cohort study to provide data to help understand environmental factors that have an impact on health. This would involve repeated observations of the same children over a period of about 10 years.

The recommendations to counter obesity encourage after-school programs and call for a ban on junk food advertising on programming aimed at children under 12 by 2010.

In the area of incentives and supports for parents, she said the new children's fitness tax credit aimed at parents with kids in certain recreational programs, such as soccer and hockey, is a move in the right direction.

"Well, if we could include helmets as part of the children's fitness tax credit, you know, that might be an opportunity to empower parents to do the right thing," she said.

In addition, she called for the federal government to enact legislation to restrict hazardous substances in products designed for children and youth, such as lead and mercury.

And it should encourage all provinces to make booster seats mandatory for children aged four to eight until they weigh 80 to 100 pounds or until they are 52 to 57 inches in height.

"I think any movement toward a national co-ordinated approach to addressing injury is very much welcomed," said Shawn Feely, program director of IMPACT at Children's Hospital in Winnipeg, a centre that conducts research on injury prevention.

"Injuries definitely do have a pattern, and when you have a pattern these things are predictable. But there's still a lot of things that need investigation to find out exactly what is happening in some of the interventions."

Falls by toddlers are a frequent cause of hospitalizations, and motor vehicle crashes can claim lives. Among older kids and adolescents, there are concerns about suicide, assaults and self-inflicted injuries, Feely said.

Pamela Fuselli, interim executive director of Safe Kids Canada, said she was "thrilled" with the report.

"I think the national strategy certainly is something that we have been asking for for a few years," she said.

In particular, she applauded the recommendation for a tax credit on helmets.

"We know that some of the lower-income families have some struggles as to buying safety equipment or they have, obviously, different priorities," she said. "And so anything that makes access to safety equipment, protective equipment is of benefit."

[Jenn Ralph]

a good example of why the Canada Health Act needs to me changed…J

This letter printed in the Charlottetown paper from an Alberta resident:

March 15, 2008 THE GUARDIAN (CHARLOTTETOWN) PAGE: A6 (EDITORIAL)
Autism services not so great after all
Editor:
Re: 'Families dealing with autism are in crisis: senator' (The Guardian, Feb. 23, 2008):
In a recent article you wrote about families dealing with autism, it was stated that in Alberta families can receive up to $60,000 per year up to the child being 18 years of age.

I am in Alberta and have two young children with autism and want to make it clear that you would be hard-pressed to find any child in Alberta getting the therapy they truly need.

The Alberta government provides a very beautiful act (Family Support for Children with Disabilities Act) that is full of holes and open to interpretation by many social workers. The act is failing our children as well as all the families that move from elsewhere to Alberta thinking they will get marvellous services for their children. My oldest son is four years old (autistic), severely delayed, can say around seven recognizable words, and was cut to 13 hours of therapy per week in September. He is now caught in the 'holes' of the FSCD Act and as we go through the very lengthy and costly appeal process, we will not get a decision until May 19, 2008 – nine months after the regression began. And let me tell you, that is just the beginning. We are joined by many, fighting all we can, and with all the energy we have left to get the services our children need. So, please, let families know it is truly a Canadian problem to get services for our children and that the Alberta FSCD Act is not all it says in black and white.

Allison Pike, Lethbridge, Alta

[Andrew Kavchak]

Hi Folks,

Back on November 22, 2006 FEAT of BC organized a rally for a National Autism Strategy on Parliament Hill. The day before the rally, after months of sending parents of children with autism, letters stating that autism was entirely a provincial matter, the federal Health Minister Tony Clement held a press conference and began by stating that the situation now was so serious, that doing nothing was "not an option". He proceeded to outline an autism plan, which included a "website" and…a "symposium".

The sad story of the symposium, which was initially to be held at the beginning of 2007 and then suddenly postponed and appeared to have its mandate changed, was well described in two letters of concern (August 6 and October 3, 2007) from the Autism Society of Canada (ASC) to the Minister. Both letters were posted on the ASC website and should be read by every concerned Canadian (see http://www.autismsocietycanada.ca/index_e.html).
Nonetheless, the "by invitation only" symposium went forward in a cloak of secrecy in early November 2007. It was organized by the CIHR (the Canadian Institute for Health Research or something like that). Now, several months later, we members of the community still have no idea what was discussed and what were the consequences. Any report? Any follow-up? Any real action? But wait! The CIHR "Scientific Director" just posted a general update message on the CIHR website. See below.

Some readers may get a warm, fuzzy, glowing feeling all over while reading it. After all, they claim to have received "positive feedback". Others, well…

Should you wish to follow-up with a request for more information, a question or commentary, please note the contact person and information at the bottom of the message from their website.
_______________________________________
From: http://www.cihr-irsc.gc.ca/e/35758.html

Institute of Neurosciences, Mental Health and Addiction (INMHA)

The Brain Brief: Vol. 5 No. 1 January 2008

National Autism Research Symposium
Toronto, November 8-9, 2007

CIHR had been tasked by the Hon. Tony Clement, Minister of Health, with organizing this event and CIHR-INMHA, with assistance from CIHR-IHDCYH, took the lead. The symposium was part of a series of initiatives on autism announced by Minister Clement in November 2006. The other commitments included exploring the establishment of a research chair focusing on effective treatment and intervention for autism spectrum disorders (ASDs); launching a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada; creating a dedicated page on the Health Canada web site focused on ASD; and designating the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal government level.

The symposium brought together 95 attendees including researchers, health professionals, educators, service providers, family members and persons with autism, as well as community organizations and government representatives. All the provinces and two territories (Northwest Territories and the Yukon) were represented. The goals of the symposium were to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research.

The opening evening session featured presentations from a person with autism (Daniel Share-Strom), a parent (Jennifer Overton) and a prominent researcher in the field (Dr. Susan Bryson, Dalhousie). On the second day, after introductory comments from the Health Minister, twelve leading Canadian researchers in the field of autism discussed the latest findings, with brief question and answer periods. Symposium participants then broke into six groups to discuss specific issues relevant to autism research. Each group suggested three key ideas to help inform research and presented these to the symposium as a whole. Every participant then had an opportunity to provide written feedback on these ideas and the symposium closed with some general comments from the floor.

Feedback from the symposium was very positive, with many participants appreciative of the opportunity to meet with individuals from different sectors and many expressing a wish to make this kind of meeting a regular event.

For further information on this meeting, please contact Barb Beckett at {bbeckett@cihr-irsc.gc.ca}[mailto:bbeckett@cihr-irsc.gc.ca].

[Author]

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