[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]

Ottawa Citizen
Mon, Feb 11, 2008, Page A5.
(Similar article also in Montreal Gazette. Note: there may be a press conference today as well.)

Snow no match for man on 450-kilometre autism walk

Jordana Huber, With Files From Jessey Bird

The metal plate in his left foot is bothering him, and the blizzards Stefan Marinoiu has walked through have left him with frozen fingertips. But after an 11-day trek to Ottawa to raise awareness about autism, the 49-year-old said the only thing on his mind is his 15-year-old son.

Unplanned, and out of exasperation, Mr. Marinoiu left his Toronto home Jan. 31 to embark on a 450-kilometre walk to "plead with the politicians" that it is time for a national autism strategy.

"Having an autistic child is like having a present and not being able to unwrap it," Mr. Marinoiu said. "I have been silent for 15 years. All the stress, all the pain, no resources, I said I gotta do something and I just walked out the door."

His pace has slowed since he left without telling his wife where he was going, and at times, he said blinding snow has left him unable to see the road.

The Ontario Provincial Police, who stopped him the first night for walking illegally on the highway, kept an eye out for him, picking him up several times and driving him into the nearest community.

"They told me I was gonna freeze to death," he said. "It has been so cold you feel like you are going to die the next second, but I take the next step. I am walking for all the tens of thousands who are like my son."

Though he can't point to one event that triggered his march, he said his son Simon's needs have grown increasingly difficult to meet. Simon waited on a list for applied behaviour analysis, an intensive treatment also known as intensive behavioural intervention for autistic children, but turned seven, the former cutoff age, before reaching the top of the list, Mr. Marinoiu said.

"My son, he can't speak, but I know he feels so much," Mr. Marinoiu said. " He needs help to be able to function and communicate. We have all the love to give him, but we need more resources."

Without money or a cellphone, the part-time delivery man has relied on benevolent strangers for help along his trek. One night, he slept in a homeless shelter, another in a church.

Area residents have anonymously paid for hotel rooms, while others have stopped along the highway to bring him food.

Last night, Kanata resident Lucie Filteau welcomed Mr. Marinoiu into her home.

Mrs. Filteau has two young sons with autism.

"He is at the end of his rope, desperately trying to get attention," she said. "He is acting out of his heart."

Mr. Marinoiu's 16-year-old daughter, Lia, created a Facebook group to share her father's cause. It now has more than 1,400 members.

"At first I thought he was crazy," said Lia, who took the train to meet her father in Ottawa last night. "But now I think it is really awesome what he has done and is still doing."

Mr. Marinoiu, his daughter and their supporters hope to arrive on Parliament Hill today between 11 a.m. and noon to rally for their cause. Mr. Marinoiu said Senator Jim Munson is expected to welcome him.

"I'm hoping for a national solution for this national problem," Mr. Marinoiu said.

ILLUS: Colour Photo: Courtesy of Kerry's Place Autism Services / Stefan Marinoiu, father of a 15-year-old autistic boy, pauses near Kingston last Thursday, on his way to Ottawa. Mr. Marinoiu left his Toronto home Jan. 31 on a 450-kilometre walk to plead for a national autism strategy.

[Andrew Kavchak]

Release

For Immediate Release

SENATOR JIM MUNSON SUPPORTS STEFAN MARINOIU IN HIS WALK FOR AUTISM

OTTAWA, February 7, 2008 – The Honourable Jim Munson (Ottawa – Rideau Canal) extends his support to Stefan Marinoiu who has embarked on a mission to walk from Toronto to Ottawa to increase awareness about autism and the need for increased funding for its treatment. Mr. Marinoiu is the father of a son with autism. The Senator has contacted Mr. Marinoiu’s family and will continue to closely follow his progress.

On the morning of Thursday, January 31, 2008, Mr. Marinoiu left his Toronto home and started walking to Ottawa. His initiative was not carefully planned nor was it in any way publicized – it even caught his wife and older daughter by surprise. Rather, it was the result of the accumulation of frustrations and the feeling of desperation shared by many parents of autistic children. It has now been a week since Mr. Marinoiu’s departure and he has already arrived in Kingston.

Senator Munson wishes Mr. Marinoiu the best of luck with the rest of his journey and assures him that he will be there to welcome him upon his arrival in Ottawa.

Senator Munson launched the Senate Inquiry into the treatment of autism in Canada. This resulted in the publication of the report of the Senate Committee on Social Affairs, Science and Technology entitled Pay Now or Pay Later. Follow this link to view the report: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-e/soci-e/rep-e/repfinmar07-e.htm

– 30 –

For more information, please contact:

The Honourable Jim Munson

Senator (Ottawa – Rideau Canal)

Tel: (613) 947-2504

or

Lia Marinoiu (Daughter of Mr. Marinoiu)

Scarborough ON

(416)-412-7656

­­­­­­­-­­­­­­­————————————————

Communiqué

Pour publication immédiate

LE SÉNATEUR JIM MUNSON APPUI STEFAN MARINOIU QUI MARCHE POUR L’AUTISME

OTTAWA, 7 février 2008 – L’honorable Jim Munson (Ottawa – Canal Rideau) appui Stefan Marinoiu qui s’est lancé le défi de marcher de Toronto à Ottawa afin d’attirer l’attention des Canadiens à l’autisme et à la nécessité d’augmenter le financement pour son traitement. Monsieur Marinoiu a un fils atteint par l’autisme. Le Sénateur a contacté la famille de M. Marinoiu et il planifie suivre son progrès attentivement.

Le matin du jeudi, 31 janvier 2008, M. Marinoiu a quitté sa résidence à Toronto et a entamé sa marche vers Ottawa. Cette initiative ne fut ni planifiée, ni publicisée. D’ailleurs, le départ soudain de M. Marinoiu fut une surprise pour sa famille. Sa décision fut pressée et le résultat d’une accumulation de frustrations qui est partagée par plusieurs parents d’enfants atteints par l’autisme. M. Marinoiu marche depuis déjà une semaine et s’est rendu à Kingston aujourd’hui.

Le Sénateur Munson souhaite bonne chance à M. Marinoiu et sera à Ottawa pour l’accueillir lors de son arrivée.

Le Sénateur Munson a lancé une enquête dans le traitement de l’autisme au Canada. Le résultat de cette enquête fut le rapport du comité permanent des affaires sociales, sciences et technologie intitulé Payer maintenant ou payer plus tard. Pour lire le rapport, veuillez suivre le lien suivant: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/com-f/soci-f/rep-f/repfinmar07-f.htm

– 30 –

Pour de plus amples renseignements, veuillez contacter:

L’honorable Jim Munson

Sénateur (Ottawa – Canal Rideau)

Tél: (613) 947-2504

ou

Mlle. Lia Marinoiu (fille de Monsieur Marinoiu)

Scarborough ON

(416)-412-7656

[Andrew Kavchak]

There is an article and picture of Mr. Marianou at
http://www.napaneeguide.com/ArticleDisplay.aspx?e=892780

Autism activist treks through Napanee

By Micah Luxen

With a bright pink sign for autism, one man, Stefan Marinoiu, walks alone down the highway, making his way from Toronto to Ottawa in the cold.

He’s already walked six days at three kilometres an hour with an injured foot, but Marinoiu is going all the way to Ottawa for his 15-year-old, who has autism. The determined father says autistic children need much more support from the government.

“[The government] is telling me they have no resources for us but as autistic children get older, life gets more difficult, so we need more help, and I’m going to the federal government to ask them for it,” said Marinoiu, as he walked though Napanee on Wednesday afternoon.

He went on to say that the United States government offers families with autistic children substantial support, something he hopes the Canadian government will adopt.

“I’m trying to do something for all those children in Canada who have autism, because they deserve the same happiness as the other children,” said Marinoiu of the illness that affects brain development in one in 1,000 children.

It’s been a hard walk for Marinoiu who’s kept on course, even during two blizzards.

“The snowstorm was really bad, but I kept walking, with the exception of a 10 minute drive by the OPP who said, ‘wow, you’re going to freeze to death.’

“And I’m very slow because I never did this before.”

The OPP picked up the walker on the 401, where it is illegal to walk – he’s now using Highway 2.

Marinoiu hoped to reach Kingston by Wednesday nightfall.

“I’m not a protester–I’m going to Ottawa in friendliness. I just want to find a solution for autism.”

[Andrew Kavchak]

If this father makes it to Ottawa, please ask your MP to meet with him. I hope he has a press conference, rally, etc. to call on the feds to adopt and implement the recommendations of the Senate Committee and to turn the words of the National Autism Strategy motion that they supported in the House into action, etc.

__________________________________________
Father makes trek to shed light on autism
Bellevue Intelligencer
http://www.intelligencer.ca/ArticleDisplay.aspx?e=889682

You can't really blame Stefan Marinoiu for wanting a shortcut to Ottawa, especially since he is walking there from Toronto.

When the Ontario Provincial Police picked him up near Oshawa he found out Highway 401 was the wrong choice.

"It's illegal to walk on the 401. I didn't know that," he said. "I thought it would be a better, straight, shorter way."

Marinoiu, 49, is making the 452-kilometre walk from Toronto to Ottawa to raise public awareness of autism.

His passion for autism is evident when he speaks and the sandwich board sign he wears which reads 'autism: time for a national solution' only reinforces that.

Marinoiu has a 15-year-old son who was diagnosed with autism when he was a child.

Marinoiu and his wife have struggled to provide proper support while their son's condition has deteriorated with age. He has now become aggressive, a common symptom in autistic children, and Marinoiu is afraid the Children's Aid Society may take him away, fearing he could hurt their younger six-year-old child.

"His autism has progressed to the point that communication is a struggle," Marinoiu said. "We just do not have the money to provide proper care for him."

Once in Ottawa, Marinoiu plans on going straight to Parliament Hill to speak with the federal government about increasing funding to support families like his who are dealing with autism. He also wants to urge the government to fund more research into autism.

"There are three types of governments: Governments that make things happen, governments that see things happen and the kind that asks what happened," he said. "We need to be the government that makes things happen."

Marinoiu, who has a plate in his left foot after breaking it two years ago, began his walk last Thursday morning from his home in Toronto. By Monday night he had walked the 171 kilometres to Trenton.

He said it has been frigid at times, especially through the blowing snow, freezing rain and high winds of Friday's snowstorm. But he just kept walking.

"I'm making something happen," he said. "If it takes me 10 days that's nothing compared to a life of despair."

He has had some help along the way. On Friday night, a Newtonville couple invited him into their home, made him coffee and a hot meal, washed his clothes and gave him a bed for the night.

At 3 a.m. Sunday Marinoiu found himself at the door of the Pentecostal Church in Cobourg. The church not only welcomed Marinoiu but gave him bedding and made him a part of their Sunday morning service.

Although he has accepted several small donations along the way from supporters, he insists he is not doing this for money.

He said he was given the "run around" after writing letters to the federal government and grew frustrated, so he decided this was the only way to promote awareness of autism.

People have referred to him as a protester, but Marinoiu does not see himself that way.

"I'm a friend. I'm not a revolutionist, I'm just a simple man trying to get a point across."

[Mike & Jean]

"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 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

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 www. featbc.org and forward this notice to anyone you think will be interested.

FEAT of BC: " To see justice is done"

[Andrew Kavchak]

And on the first day back after their extended absence from Parliament Hill:

House of Commons
Hansard
Monday, January 28, 2008

Petitions

Autism

Mr. James Bezan (Selkirk—Interlake, CPC):

Mr. Speaker, I am pleased to present a petition today on behalf of 150 people from my riding in support of creating extra training in our universities across Canada for autism spectrum disorder. The petitioners ask that members of Parliament look at amendments to the Canada Health Act that include more intense behavioural intervention as well as applying the principles of applied behaviour analysis.

[Brent Jordan]

Todd,

What I heard him say was that non-verbal plus a diagnosis would be a slam dunk and he likely would not charge anything. My son is not quite 4 and is verbal thanks to nearly 2 years of ABA therapy so far. I wished I had asked him that question. I also wished I'd asked the group last night, how many had applied and been rejected or applied and had to go through hoops before getting accepted.

I agree that calling him makes sense but I would still like to hear from other's who have gone down this road as if there is one thing I have learned on the journey that is autism, the more you know, the better you are able to ask the right questions. If there is one thing that was clear last night, he does not know much about autism.

Brent

[Todd Dea]

Brent,

I would suggest calling him. He isn't likely to charge you anything to talk with you over the phone.

If I recall correctly he said that an Autism diagnosis is likely a slam dunk (although he seemed to know very little about Autism in general) and as such he would charge a LOT less.

The $1500 was for "learning disability" cases which he said required quite a bit more work on his part.

Call him.

Todd

[Brent Jordan]

I am hoping to get some advice on filing a T2201 Disability Certificate with Revenue Canada. I attended a meeting last night of the North Shore Autism Group and had the fear of Revenue Canada instilled in me by the speaker. I assumed that having the T2201 filled in by our doctor was enough. Can anyone provide me with advice on what should go in with this application? Can anyone tell me what to be careful about or to avoid? Has anyone been rejected and if so, did you ultimately get accepted and what did you have to do to get over the government hurdles. I don't want to mess this up, but the other side of the coin is, I can't really afford to pay last night's speaker $1,500 to help me file this form when I need that money for my son's therapy. Please e-mail me at btefz@telus.net

Thanks

[Andrew Kavchak]

December 20, 2007

Vancouver Sun

Mother of three autistic boys owes $13,597.64

Provincial audit takes issue with Sunshine Coast resident's use of invoice book and wants receipts

By Pete McMartin

Every three weeks, as regularly as clockwork, Kathy Kyler receives the same bill in the mail.

It asks her to pay $13,597.64.

It is from the Ministry of Children and Family Development's Autism Funds Processing Unit.

Kathy, who is 50, is the mother of three children. She has a 16-year-old boy, Alex, and two 11-year-old identical twins, Evan and Nicholas.

The twins are autistic. Evan is severely autistic and classified as low-functioning — he does not speak — and Nicholas is high-functioning.

Kathy lives on the Sunshine Coast, where autism services are spread thin. She is divorced, which, because of the extreme stress in such cases, is a not uncommon phenomenon among couples of children with autism.

She is also on disability. She receives $24,000 a year. She suffers from hepatitis C, which she believes she contracted during the delivery of the twins at Women's Hospital. Her health is failing, she said, and she needs a liver transplant. She also suffers from a compendium of other ailments — lupus, fibromyalgia, autoimmune disease and, she added, depression.

"I wonder why," she deadpanned.

For the treatment of the twin's autism, Kathy receives from the MCFD in the neighbourhood of $6,000 a year per child. With this, she pays for their therapy and the behavioural consultants she must ferry in from time to time. As any parent of a child with autism can tell you, autism therapies are expensive, exhaustive and bewilderingly varied.

Because the B.C. government leaves it up to parents to choose which therapy they feel is right for their children, the funding is individualized and direct. Parents are then expected to submit receipts to the government to show how the funds were spent.

Since her boys were three, when they were first diagnosed, Kathy did this without incident.

But in April, she received word from the ministry that her file was being audited for the previous year and she would receive no more funds until the audit was complete.

Then in June, she received the bill for $13,597.64, virtually all the funds forwarded to her by the ministry between March 2006 and May 2007.

It seems the ministry was unhappy with Kathy's accounting. For years, she had submitted records of her costs from an invoice book. It was this to which the ministry objected. It demanded receipts as proof of accountability. Thus, the bill.

After weeks of phone calls and e-mails to the ministry, Kathy succeeded in getting her funding reinstated, but the funding would now go directly to her children's behavioural consultants.

The bill, however, stood.

So Kathy turned to the provincial ombudsman to look into the affair. But the ombudsman, she said, sided with the ministry. (An ombudsman official would only say that her complaint "was not substantiated.")

But according to Clair Schuman, executive director of Autism Community Training (ACT), the society the provincial government contracts to provide programs and information to parents of children with autism, Kathy's predicament is not an isolated one. Kathy herself said she knew of at least two other families in her area with the same problem.

"We have been getting an increasing number of calls and complaints [like Kyler's] in the last six months," Schuman said.

"It's not an issue of families not being accountable, it's an issue of the long delay between parents receiving funding and the audits the ministry does. Parents put in their expenses and continue to receive funding through the year, and they assume, I think logically, that if they submit the documents they have been and continue to receive funding, then everything is all right."

Then, a year later, Schuman said, if the ministry finds something amiss in the audit, or objects to a therapy the parents have chosen, they receive a whopping bill.

"So it leaves the parents — especially those most vulnerable — in a real dilemma at the end of the year."

One of those was Debra Pugh, director of research and training for ACT. Pugh, a former foreign correspondent for the Guardian newspaper of London, and as knowledgeable of funding agreements as anyone, was asked by the ministry to remit in the neighbourhood of $5,000.

"The unfairness of it," Pugh said, "is that [parents] have been doing something for the same way for three or four years, but for some reason, the ministry has decided to change the way things are done. But instead of warning parents and saying things are changing, they are telling the parents they have to refund the money without any forgiveness at all."

MCFD Minister Tom Christensen declined to comment on Kyler's case, saying he didn't know "the intricate details of the file."

"There's no question this is a challenging situation," Christensen said, "and we will continue to work with her to ensure the welfare of her children is taken care of."

But because these were tax dollars being directed to parents, he said, there had to be a high level of accountability.

Christensen did admit, however, that "the back end of the process" — that is, the delayed year-end audit — "is certainly taking more time than I would like."

In the meantime, Kathy Kyler wonders how to handle a debt she can't pay.

"I have no way to pay it, no matter what. I'm never going back to work, because I can't. I'm in an incredible amount of pain, and I save all my energy for my children."

pmcmartin@png.canwest.com or 604-605-2905

[Author]

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