[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]

Autism was also discussed yesterday in the Senate during the "Senators' Statements" portion and "Question Period".

Senate Debates
Tuesday, February 12, 2008.

Senators' Statements

Autism Awareness

Mr. Stefan Marinoiu—Walk from Toronto to Ottawa

Hon. Jim Munson: Honourable senators, this week I had the honour to meet a man who walked all the way from Toronto to Ottawa, in cold and snowy weather, to raise awareness about autism.

Mr. Stefan Marinoiu is the father of Simon, a young man with autism who, at age 15, is having a harder and harder time coping. The family is afraid for him and also for their own safety as Simon becomes more aggressive — often a symptom of autism. Like other parents of autistic children, Mr. Marinoiu has sacrificed to buy services and programs his son needs.

He has asked the government for help, but has not received it. He is like many witnesses who appear before our Standing Senate Committee on Social Affairs, Science and Technology — people who are at the end of their rope. They are ready to do any number of things. They may be about to lose their homes because they need the money to pay therapists, or they may be about to move to Alberta where benefits for children with autism are more generous. One thing is certain: families with children with autism are under stress. Every day is about hard work, patience, advocacy and sacrifice.

The world is a lonely, hopeless place when a father feels he cannot help and care for his family. That is what happened to Mr. Marinoiu. On January 31, he took this 11-day walk to Ottawa on Highway No. 2, in terrible weather, to come here to express his frustration and to tell Parliament what he needs. He has met with the Minister of Health and is not very satisfied with his response.

I hope, honourable senators, that we will join Mr. Marinoiu in his effort to make this government take action on Simon's behalf, and on behalf of all Canadians with autism.

Question Period

Health

National Strategy for Autism

Hon. Jim Munson: Honourable senators, my question is for the Leader of the Government in the Senate. Earlier in a statement, I told the house about Stefan Marinoiu and his courageous walk to plead his case for autism. I do not understand why the situation has to come down to a man acting in desperation for his son and, of course, for tens of thousands of other sons and daughters across the country.

In 2006, the House of Commons passed a motion supported by the Conservatives. The motion stated that in the opinion of the House the government should create a national strategy for autism spectrum disorder. The final report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled, Pay Now or Pay Later, Autism Families in Crisis, recommended a similar plan. In fact, I believe that the committee led the way in calling for a national strategy. Given that we have national strategies for AIDS, diabetes and cancer, why is this government not taking any action to create a national autism strategy for all Canadians?

Hon. Marjory LeBreton (Leader of the Government and Secretary of State (Seniors)): Honourable senators, I thank Senator Munson for the question. I listened to the honourable senator's statement and, as stated, Minister Clement met with Mr. Marinoiu yesterday. In November 2006, Minister Clement announced a series of initiatives to improve knowledge and research of autism, which was welcomed by the Autism Society of Canada at the time. I am proud to say that the government has fulfilled each of the commitments made.

For example, the government contributed $1 million for the creation of a national chair on autism research and intervention at Simon Fraser University in British Columbia. I stress that it is a national chair. The government hosted a national research symposium and is working with the provinces and territories to improve knowledge and research because this matter was brought to the attention of this government and previous governments.

In addition to supporting research, the government is supporting families. In Budget 2007, the government invested $140 million over two years to establish a registered disability savings plan to assist families dealing with autism and other disabilities in their families.

Senator Munson: I thank the honourable leader for her response but, at the end of the day, this is a question of national leadership. That is what the autistic community is saying to me and to others. When he held his news conference, Mr. Clement was told that his was a modest response to their request.

Every autistic community and organization in this country continues to ask me to keep impressing that we need national leadership. What will it take to simply think outside the box for a second when dealing with the Health Act? There are no boundaries, as we know, when it comes to autism. In Alberta, people are receiving full treatment — $60,000 for intensive behaviour treatment. In Ontario, there are waiting lines. In Atlantic Canada, there is not enough money.

It does not take much thought or foresight for a minister to say, "Let's sit down, ladies and gentlemen from education and health, to see if we can work something out." I just do not know how long Canadians have to wait.

Senator LeBreton: The honourable senator points out the Alberta situation, which is an excellent example of the work that is being done. Ultimately, in many of these health issues, the provinces are the front-line service deliverers.

The McGuinty government in Ontario took the autism people to court and won. That was a sad day in Ontario for parents of autistic children — a sadder day still that they did not live in a province like Alberta.

The fact is that Minister Clement has set aside funds and worked on a series of initiatives. In terms of any conversations or deliberations he has had with the provinces, I will speak to him and see what the provinces are saying in regard to this particularly sad situation and report back to the honourable senator.
_________________________________

[Andrew Kavchak]

House of Commons
Hansard
Tuesday, February 12, 2008

Question Period

Autism

Hon. Shawn Murphy (Charlottetown, Lib.):

Mr. Speaker, last year the House, with the support of all Conservative members, passed a motion calling for the creation of a national autism strategy. The government has totally ignored this motion.

This week, Stephan Marinoiu, a father of an autistic child, walked from Toronto to Ottawa to raise awareness of the government's failure to live up to this commitment. Over the last couple of days, it would have been a tough cold walk.

My question is for the Minister of Health. How many more Canadian families will be left out in the cold by the Conservative government as costs rise for family members dealing with autism?

Hon. Tony Clement (Minister of Health and Minister for the Federal Economic Development Initiative for Northern Ontario, CPC):

Mr. Speaker, this is something parents around the country, who have autistic children, deal with on a day to day basis, including members of our caucus.

This is why the government acted. We did something last year that no other federal government has done. We invested $1 million in a brand new chair of autism research. We hosted a national research symposium, working with our provincial and territorial partners to share best practices, improve knowledge and research.

We are doing concrete things in our sphere of jurisdiction to help the lives of autistic children and their parents.

[Dione Costanzo]

Hi everyone,

Please take a few moments to read the following notice for FEAT's MEDICARE FOR AUTISM NOW! Rally on March 2.

Dr Melvin Delevie has been added to the roster of speakers. He is well known to many families for his dedication to our children.

I'm sure we have all been following the story of Stefan Mariniou's desparate trek from Toronto to Ottawa. This is a glimpse into a family that has not had access to treatment for their son and we need to come out for them and for all Canadian families who are discriminated against by the governement.

Please RSVP at info@featbc.org

“Medicare for Autism Now!” Rally

Sunday, March 2nd, 2008
2:00 p.m. to 4:00 p.m.
Shadbolt Centre for the Arts
6450 Deer Lake Avenue
Burnaby

Why should you attend?

• Despite a decade of lobbying, collaborating and litigating – autism treatment is still excluded from our universal health care system. Canadian families are still bankrupting themselves in order to provide treatment for their autistic children.

• The current and limited funding provided through the provincial government’s social services ministries could evaporate tomorrow with the stroke of a bureaucrat’s pen. No legislation exists within these ministries to protect or enshrine our children’s medically necessary treatment.

• In 30 years of “advocacy”, the only two initiatives which have achieved ANY success for our children and families has been litigation, and more recently, focused political action. Both were brought by the members of FEAT of BC – a 100% volunteer organization.

• Autism is an epidemic of staggering proportions, it now afflicts one in every 150 children in North America, one in every 94 boys. It is time for the Federal Government to act! We need to let those who govern and those who wish to govern know that they are going to be held accountable at the ballot box in the next federal election.

Who should attend?

You – and every fair-minded Canadian you know!

Children with autism suffer from political indifference. It will take the sustained energy and dedication of EVERY CANADIAN who desires a just society to correct this injustice. For our children’s sakes, and the sake of future generations, we urge you to attend this rally. Please bring friends, family, anyone and everyone you know who is appalled by the gross injustice done to our children every day by the governments of Canada and its provinces.

Featured speakers will include:
Dr. Sabrina Freeman – Executive Director, FEAT of BC and parent
Jean Lewis – Director, FEAT of BC and parent
David Chan – Director, Autism Society of BC, FEAT of BC and parent
Dubravka Skrijelj – FEAT of BC member and parent
Dr. Glen Davies – Clinical Director – ABLE Developmental Clinic
Dr. Melvin deLevie – Pediatrician
Beverley Sharpe – FEAT of BC member and parent
Louise Witt – Director, Autism Society of BC, FEAT of BC and parent
David Marley – FEAT of BC member and Political Strategist

Please RSVP to info@featbc.org and forward this notice to anyone you think will be interested.

FEAT of BC: “ To see justice is done”

[Andrew Kavchak]

Hi Folks,

The Ottawa television "A Channel" station broadcasted a report on Mr. Marinoiu's arrival on Parliament Hill yesterday and posted the video on their website at:

http://www.achannel.ca/ottawa/news_53543.aspx

[Andrew Kavchak]

The CBC story at: http://www.cbc.ca/news/background/autism/
concludes with the summary below of what the provinces each separately offer in terms of autism programs.

However, the ultimate source that the CBC used was a Library of Parliament report prepared by the "Parliamentary Information and Research Service" for MPs and Senators (most likely for the Senate Standing Committee on Social Affairs that was holding hearings into the "Funding for the Treatment of Autism" issue). The date of the report is November 1, 2006.

The report may be accessed by clicking on the link at the bottom of the CBC report or going to:

http://www.parl.gc.ca/information/library/PRBpubs/prb0622-e.htm

From the ending of the CBC report:

Provincial medical plans offer varying levels of coverage for autism therapy. Some will also cover all or part of the cost of intensive ABA and IBI programs.

Alberta pays up to $60,000 a year per child up to age 18 for ABA/IBA programs.

Ontario covers ABA/IBI programs for qualifying children under the age of six — older children are also eligible if an assessment determines they need more treatment.

British Columbia pays up to $20,000 annually for treatment for children up to age six. It pays $6,000 annually for treatment of children six years of age and older.

Nova Scotia pays for an Early Intensive Behaviour Intervention Program. Direct EIBI is provided over the first six months for 15 hours a week, and is gradually reduced over the following six months (10 hours per week for three months and then five to six hours a week for the remaining three months). The number of children selected for the program depends on the resources available through local District Health Authorities.

P.E.I. covers IBI programs for up to $200 per week.

In New Brunswick, the government will pay for intervention services for a child diagnosed with Autism Spectrum Disorder until the beginning of the school year in the year they turn five.

Manitoba pays up to $6,000 a year for preschoolers for up to 36 hours of ABA treatment a week, with five hours of that treatment provided by the family.

Newfoundland and Labrador will pay up to $40,000 a year per child under the age of six for 30 hours a week of ABA/IBI treatment for two years.

Saskatchewan offers up to 10 hours of therapy under its Autism Early Childhood Therapy Program. In 2006, six children were covered.

Quebec's Autism Action Plan offers 20 hours a week of ABA/IBI therapy for children between the ages of two and five.

The Yukon government pays for ABA/IBI treatment for children up to the age of 19, with no yearly maximum.

The Northwest Territories pays for ABA/IBI treatment for pre-school and school-aged children.

Nunavut has no specific program for children with autism.

Source for funding details: Library of Parliament

[Andrew Kavchak]

From the Belleville Intelligencer
http://www.intelligencer.ca/ArticleDisplay.aspx?e=898278

Devoted dad gets meeting with health minister

Posted By Aedan Helmer

When Stefan Marinoiu walked out the front door of his Scarborough home nearly two weeks ago, bound for Parliament Hill, he wasnt expecting face time with a federal cabinet minister.

But after an arduous 450-km trek on foot through bitter cold, the 49-year-old autism activist was invited inside Health Minister Tony Clements chambers for a one-on-one meeting.

Marinoiu, whose 15-year-old son Simon is autistic, said the protest is a personal cause, but its also for all the parents of autistic children.

After waiting several years for behavioural therapy, the Marinoiu family was told Simon was too old for treatment when he finally reached the top of the waiting list.

Marinoiu wrote letters and received polite responses, but no action from government officials, while his son's condition worsened.

His story is becoming all too common, said Liberal Senator Jim Munson, who greeted Marinoiu as he arrived on the steps of Parliament Hill.

"From my perspective, we're in a crisis," said Munson. "Governments have a moral and ethical obligation to pay attention."

A recent Senate report indicated one in 166 Canadians – approximately 48,000 children aged 0-19, and 144,000 adults – are being diagnosed with autism.

After meeting with Clement, Marinoiu said the minister passed the buck to the provinces.

"I'm a little bit discouraged, but this is just one battle," said Marinoiu. "You lose one battle but you cannot lose the war."

[Dione Costanzo]

Hi everyone,

Article on cbc.com today:

http://www.cbc.ca/news/background/autism/

Shows summary of funding coverage by province at the bottom of it.

We've got a long way to go, baby.

Dione

[Andrew Kavchak]

Hi Folks,

Here's a report from the Hill: Just before 11am Stefan Marinoiu arrived on the Hill with his daughter Lia (who took the train from Toronto to catch up with him) and was met by Senator Jim Munson, and a group of parents and media. Today must be the coldest day of the winter so far in Ottawa. With the wind it feels like -35C or something like it, and Mr. Marinoiu was shivering like a leaf as frost built up on his moustache. He gave interviews to the media, as did the supporting cast of parents who showed up. I spoke with the Ottawa Sun reporter, and gave short interviews to the "A Channel" and CTV/CJOH television reporters.

Mr. Marinoiu, his daughter and Senator Munson then left for a meeting with Health Minister Tony Clement. Although there was a press scrum and conference on the steps in front of Centre Block on his arrival, there may be another press conference this afternoon. Well, I suspect he was glad to finally get indoors.

Good luck Stefan!

[Andrew Kavchak]

Ottawa Sun
Feb 9 2008

Man Walks From Toronto to Ottawa for Autism Awareness

Terri Saunders

It’s not exactly like Mr. Smith’s journey to Washington, but it’s close.
On the afternoon of Jan. 31, Stefan Marinoiu left his family home in Scarborough and started walking. His destination: The capital of Canada. His goal: To raise awareness of the struggles faced by families living with autism.

“My wife and I had tried many times to plan this, but there never seemed to be the perfect time,” said Marinoiu, 49. “On that day, I just said, ‘If I’m going to do this, I’m going to do this.’”

As the father of a 15-year-old son with autism, Marinoiu has been dealing with the “system” for years.

Five years ago, Simon Marinoiu had reached the top of a waiting list for applied behavioural analysis, an intensive treatment for children with autism, but the cutoff age for ABA is seven.

After living through what Stefan described as “several straws which broke the camel’s back,” he decided to make the trek to Ottawa.

He left his house with nothing but the clothes on his back.

He began walking along Hwy. 401, which isn’t allowed. At one point, he was stopped by the OPP and dropped off on Hwy. 2.

Over the course of the next 10 days, Marinoiu walked through dozens of communities. At times, people offered him food and shelter and there was no shortage of company.

“A lot of people came up to me and told me they had one or two or three children with autism and they all told me to keep talking about it,” said Marinoiu.

On Monday, Marinoiu will meet with Sen. Jim Munson, and he plans to be heard by other government members.

“I hope they don’t tell me to take a walk,” he said with a laugh. “I just want to be able to speak my mind. As a Canadian citizen, I have that right.”

[Andrew Kavchak]

National Post
Monday, Feb 11, 2008.

Ontario court to rule if autism suit can proceed
Treatment Funding

Shannon Kari, National Post

The Ontario Court of Appeal is being asked to decide if a class-action lawsuit can go ahead on behalf of autistic children seeking treatment within the public school system in the province.

A three-judge panel will hear an appeal today of a Superior Court decision in March, 2007, that allowed part of the lawsuit to continue, based on allegations that the policy violates the equality provisions of the Charter of Rights.

The provincial government will be seeking to dismiss the legal action entirely, arguing that the issue has already been decided by a Court of Appeal ruling in 2006 involving age cutoffs for publicly funded autism treatment.

The Ontario government eliminated the age restriction for intensive behavioural intervention (IBI) treatment for autistic children, although the programs are outside of the school setting.

The parents represented in the class action lawsuit say they are asking for the same treatment for their children as for students with other disabilities.

"We feel our children are entitled to an education, the same as every other child," said Lynn Shane, whose son is autistic.

She said the province is funding more than 20 hours of IBI treatment weekly for her son. But it is not within a school and as a result, she drives her son from Mississauga to Burlington four times a week for treatment and also provides him with home schooling.

Other parents have placed their children in private education programs, at their own expense.

"We want the province to allow children with autism to access education and therapy," Ms. Shane said.

David Baker, a lawyer representing the parents, said they are put in a difficult spot.

"Parents have to choose, whether to receive the therapy, or education," for their children, Mr. Baker said.

"They are entitled to both," he stated.

Ontario is the only jurisdiction in North America that does not deliver IBI treatment through the education system, Mr. Baker said.

skari@nationalpost.com LEARNING DISABILITIES; MENTALLY DISABLED; THERAPY; EMOTIONALLY DISABLED; CHILDREN; DISABLED

ILLUS: Black & White Photo: Kerry's Place Autism Services / Stefan Marinoiu, father of a 15-year-old autistic son, pauses near Kingston, Ont., last week on his way to Ottawa. Marinoiu left Toronto on Jan. 31 on a 450-kilometre walk to plead for a national autism strategy. ;

[Author]

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