[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

[Mike & Jean]

November 7, 2007

For Immediate Release

“Paralysis by Analysis”

Vancouver, BC – Canada’s no longer so new Conservative government has convened a so-called ‘National Autism Research Symposium’ in Toronto later this week. “For what purpose one wonders,” asks Jean Lewis, a founding director of FEAT-BC [Families for Early Autism Treatment of BC]. “Like the ‘Child Health Summit’ held in Ottawa last April, this is another invitation-only talk-fest. It is designed to produce photo-ops and sound-bites that assist the government in a cynical exercise aimed at manufacturing a societal consensus concerning an approach to autism treatment and its funding; one that suits its transparently manipulative agenda. The exercise is sure to fail.”

This month marks the third anniversary of the Auton decision by the Supreme Court of Canada, in which the jurists stated unequivocally that the question of funding for autism treatment was for parliament and the legislatures. “In three years, all that Canada’s myopic political class and their blinkered bureaucratic acolytes have produced has been delay, disingenuous news releases and, in the case of Ontario, outright mendacity,” states Dr. Sabrina Freeman, founder and executive director of FEAT-BC. “In three years, how many children have been diagnosed with this devastating condition? How many opportunities to provide substantive help, and to learn, have been lost? How many families have come asunder? How much needless suffering has been inflicted, all due to a lack of political will to do the right thing?”

While the federal government and its apologists parrot the public relations mantra that ‘more research is necessary’, Canadian courts found, over three years ago, that science-based, proven effective, treatment for autism is available. In 2006, the United States Congress voted unanimously to put $945 million into combating autism. Recently, the Australian national government has pledged $190 million to this cause. Why is our federal government out of step? Could it be because autistic children and their exhausted parents have to date been absent from the electoral battlefield? If so, that’s about to change, according to Lewis.

“The reckless disregard of this Conservative federal government with respect to these disabled children and their desperate, and often destitute, families verges on the criminal,” says Jean Lewis. “Their callousness is breath-taking and will, come the next federal election, be met with a perfect political storm. That’s not a threat, it’s a promise.”

-30-

For further information, contact: Jean Lewis at 604-925-4401 or 604-290-5737, and jean.lewis@telus.net .

[Jemma Lee]

Oh boy oh boy some of my favorite people will be at the symposium: Tony Clement, Pat Mirenda… great minds who really care about our children. I must go and collect autographs.

Jemma

[Andrew Kavchak]

National Autism Research Symposium

Four Points Sheraton Hotel
6257 Airport Road · Mississauga, Ontario L4V 1E4 · Canada
Phone: (905) 678-1400

Thursday November 8th 2007Windsor room

6:30 PM Welcome from the organizers – Dr. Michael Kramer, Scientific Director, Institute of Human Development, Child and Youth Health, Canadian Institutes of Health Research (CIHR)

6:45 PM Is Anybody Really in Charge Here? A Call to Coordinate Diagnostic Procedures with School Supports for Kids with Autistic Spectrum Disorders – Daniel Share-Strom, college student

7:00PM Autism: Now What? – Jennifer Overton, parent and playwright

7:15 PM Autistic Spectrum Disorders: Recent Advances and Outstanding Research Questions – Susan Bryson, Dalhousie University

7:30 – 9:00 PM Cash bar and reception
Friday, Nov. 9th 2007Kingston room

7:00 AM Continental breakfast
8:00 AM Welcome – Dr. Michael Kramer
8:05 AM Welcome – Hon. Tony Clement, Minister of Health, Government of Canada

8:20 AM Introduction of facilitator – Dr. Barbara Beckett, Assistant Director, Institute of Neurosciences, Mental Health and Addiction, CIHR

8:25 AM Overview of symposium – Susan Goodman, Facilitator, Policy Planning Plus Inc.

8:40 AM State of the science· Autism Genetics: What We Know Now and Why It Is Important – Dr. Stephen Scherer, Hospital for Sick Children, Toronto· Epidemiology of Autism Spectrum Disorders: Current Rates, Time Trends and Surveillance – Dr. Eric Fombonne, McGill University· Neurophysiology and cognition – Dr. Laurent Mottron, Université de Montréal

9:40 AM Qs and As – the state of the science

9:50 AM Health break

10:10 AM Panel discussion: Research perspective on early intervention – moderated by Dr. Susan Bryson, Dalhousie University· The Behavioural/Developmental Continuum of Interventions for Autism Spectrum Disorders: A Systematic Review – Veronica Smith, University of Alberta· Outcomes for Children in the Ontario IBI Program – Dr. Nancy Freeman, Surrey Place Centre · Early Intervention Outcomes in British Columbia: Two- and Five-Year Follow-up – Dr. Pat Mirenda, University of British Columbia· Effectiveness of the Nova Scotia EIBI Model: Preliminary Data – Dr. Isabel Smith, Dalhousie University· Developing Clinical Practice Guidelines for Intensive Behavioural Intervention in Ontario – Dr. Peter Szatmari

11:40 AM Screening and diagnosis· Screening and diagnosis of ASD: Best practice, recent advances and what does it mean for Canadian families? – Dr. Lonnie Zwaigenbaum, University of Alberta· Screening and Diagnosis in Teens and Adults with Autism Spectrum Disorders: The need goes on …” – Dr. Lillian Burke, Regional Support Associates, Woodstock, ON

12:15 PM Lunch – provided

1:00 PM Complementary and alternative treatments· Complementary and alternative treatments: a critical review – Dr. Wendy Roberts, Hospital for Sick Children

1:25 PM Adolescent and adult perspectives· Adolescents and adults: co-morbidity and service needs – Dr. Peter Szatmari, McMaster University· Interventions for Asperger Syndrome: Current Research and Future Directions – Dr. Kevin Stoddart, social worker, Toronto

2:10 PM Qs and As – screening & diagnosis, complementary & alternative treatments, adolescents & adults

2:30 PM Breakout discussions – choice of 6 subject areaso Knowledge translation: How do we improve access to and utilization of research findings and information about autism? o Intervention: What makes interventions successful? What are the research gaps and priorities? How can research better contribute to clinical practice and policy development?o Complementary and alternative treatments: What do we know about the benefits of complementary and alternative treatments for people with autism? How they can be integrated with mainstream treatments?o Lifespan issues: What are the research gaps with regards to adolescents and adults with autism? o Screening and diagnosis: Is there a gold standard? What is the role of families, educators, community organizations etc.?o Causes: What is the role of genetics and environmental factors? How can this knowledge inform interventions/programs and the daily lives of individuals and families with autism?

3:30 PM Health break

3:45 PM Reporting back from breakout sessions – Rapporteurs

4:45 PM Wrap-up – Susan Goodman, Barbara Beckett

5:00 PM Adjourn

[Andrew Kavchak]

Hi Folks,

If you are interested in reading the federal government's reply to the Senate Autism Committee recommendations, you can access it by visiting the homepage of the Autism Society of Canada.

http://www.autismsocietycanada.ca/index_e.html

If you scroll down the page you will see the link. If you scroll down the page even further you will see links to two letters that the ASC sent to Minister Clement on August 6 and October 3 regarding the autism "symposium" that is being choreographed by the Canadian Institute of Health Research (CIHR). You may recall that last year, just one day before a FEAT demonstration on Parliament Hill to mark the second anniversary of the Auton decision, Minister Clement suddenly announced a new set of "autism" initiatives, including holding a "symposium". Well, the symposium was supposed to be in the Spring, and was then postponed to next week (November 8 and 9). It is "by invitation only" and nothing has so far been published about what is on the agenda, although I was verbally told the agenda will not address policy issues, but strictly issues of research. Presummably they will discuss what we know, where are the gaps, and discuss research areas for future studies. I would have thought that the research community would already have meetings of this type on a regular basis. Anyways, the letters from the ASC to the Minister Clement give an idea of how the mandate of the symposium appears to have changed, etc… Worth reading.

[Dave Collyer]

Hi Dione,

Sorry. Email w PDF just sent. My correct address is:

drcollyer123 (at) mac (dot) com

I seem to have blended two addresses into one non address. Apologies.

Dave.

[Dione Costanzo]

Hey Dave,

Thanks for responding. I am getting an error when emailing you. I"m dionec@shaw.ca

Thanks
Dione

[Dave Collyer]

Dione,

If you email me I can send you a copy of the PDF.

drcollyer123 (AT) shaw (dot) ca

D.

[Dione Costanzo]

Hi everyone,

Where can I find Minister Clements official response to the senate report?

Thanks
Dione

[Andrew Kavchak]

Hello Minister Clement,

In your recent reply to the Senate Committee report "Pay Now or Pay Later: Autism Families in Crisis" you completely ignored the crisis and tried to minimize its reality by stating that there was insufficient evidence to support the claim of a growing prevalence rate. This is incorrect and demonstrates that your understanding of the facts is deficient. A scan of the autism environment reveals that you are in fact the only person who seems to believe what you are saying.

For example, a newly-published article on addressing autism in the school setting in an online journal for those in the field of education in the U.S. opened with the paragraph copied below. How is it that the U.S. CDC and Department of Education can actually keep records of such figures and have proof of the rising numbers…while in Canada the best you can do as Health Minister is spend a year (so far) on studying the feasibility of gathering prevalence data and use misleading statements to justify total inaction on the policy development front with respect to access to treatment for kids with autism? Surely you can do better than that. Please consider asking our American neighbours how they do it when it comes to gathering data and providing treatment. Why waste valuable time trying to reinvent the wheel?

Even if the increase in prevalence rates is strictly due to better diagnosis and a wider scope of the definition of "Autism Spectrum Disorders" and not to an actual increase in the prevalence of ASDs, the fact is that 1 in 150 is a lot…and not one province offers the core healthcare treatment of Intensive Behaviour Intervention (IBI) under Medicare.

Our community needs some leadership at the federal level to develop a National Autism Strategy. Your reply to the Senate report and recommendations were profoundly disappoiting and our whole community urges you to rethink your approach in this matter.

Yours truly,
Andrew Kavchak (parent of a child with autism)
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From: http://www.districtadministration.com/viewarticle.aspx?articleid=1295

Addressing Autism

How school districts can improve prospects for students with autism.

By Leslie Werstein Hann

October 2007

AS THE FASTEST GROWING DEVEL-opmental disability, autism presents one of the greatest special education challenges facing school districts today. In February, the U.S. Centers for Disease Control released data showing that about 1 child in 150 has a form of autism, when previous estimates put the figure at 4 or 5 per 10,000. According to the U.S. Department of Education, the number of children age 3 to 21 in federally supported programs for autism increased from 22,000 in the 1993-1994 school year to 223,000 in 2005-2006.

[Andrew Kavchak]

While Federal Health Minister Tony Clement posts messages on his Department of Health website marking Autism Awareness Month saying that: "Though much progress has been made through research, care and education, we still do not know what causes autism nor the most effective treatments and interventions" it would appear that everyone else except him in fact knows what treatments and interventions are "getting positive results".

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From: http://www.emaxhealth.com/119/17626.html

Autism Treatment Program Getting Positive Results

A program designed to enhance social and communication skills for young children with autism spectrum disorder is providing added benefits to their families.

The interim results of an independent program evaluation conducted by IWK Health Centre Research Services and Dalhousie University indicates that after one year of Early Intensive Behavioural Intervention (EIBI)treatment, virtually all 27 children in the first phase of the program had significantly improved communication skills. According to tests and parental feedback, they also had improved problem-solving skills and reduced behavioural problems.

"The implementation of the EIBI program has done wonders for our boys — both academically and socially," said Tracey Avery, a mother of two children with autism who participated in the EIBI training in Halifax. "Parenting children with autism is extremely challenging. Receiving help to achieve many goals means so much to parents, but also makes a life-changing difference for these children."

"I'm very pleased to see this program is truly making a difference in the lives of children and families dealing with autism," said Health Minister Chris d'Entremont. "As the program becomes fully implemented, we expect to improve the future of even more young children."

A major aspect of the program involved teaching parents the skills to elicit language from the children. Mrs. Avery said this enabled the family to communicate with one another, making every day less stressful.

Many of the children were about a year and a half behind in language-development skills when they began EIBI treatment. On average, children gained more than a year's worth of language skills in the first 12 months of treatment.

"Words cannot express how we felt when Kyle started talking after five years of silence," said Ms. Avery. "Brandon started to interact with others and was much more aware of his environment." More than 88 per cent of parents surveyed indicated they would highly recommend the program to other parents who have young children with autism.

Some parents surveyed also indicated that improved behaviour and reduced symptoms increased family participation in community activities with their children.

The EIBI program is delivered by a multi-disciplinary treatment team that provides individualized programming and intervention for each child.

The program is offered through district health authorities and the IWK Health Centre, in collaboration with Nova Scotia Hearing and Speech Centres.

EIBI helps develop communication, play and other functional skills. It helps children learn how to relate to, and to function more effectively in, family and community life. EIBI can be provided in a variety of settings, including in the home, at day-care centres, preschools and within other community environments. It enhances other services already available for children with autism and their families across the province.
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[Author]

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