[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

[Isaac]

Hello everyone,

More on the shameful divide that separates Canada and the U.S. on autism treatment (please visit the link below).

Warning: this not what you will likely hear on the CBC anytime soon.

–> http://www.azcentral.com/arizonarepublic/news/articles/0318autismbill0318.html

[Andrew Kavchak]

National standards!? National standards!? Would that not require some leadership at the federal level? Would that not require a recognition that what the provinces are doing is inadequate and can be improved? Today there were two interesting articles in the media from the Pacific and Atlantic. First, in B.C. things are insufficient. And in Newfoundland and Labrador they are calling for…"national standards". And where is the federal Health Minister when you need him? One person who recently met with him (Clement) to plead for a National Autism Strategy stated afterwards "I am disappointed. It is hard to do great things with small people."
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March 18, 2008 TIMES COLONIST (VICTORIA) (FINAL) PAGE: A10 (COMMENT)

Disabled kids aren't getting the help they need in B.C.

Paul Willcocks, Times Colonist

I can't imagine anything more challenging than being the parent of a disabled child.

It's not just the effort, the commitment that goes into making sure your child has the best life possible. Not just the exhaustion and expense and emotions and the toll on other relationships.

The parents also know that someday they won't be there. And then what will happen to their children, who can't care for themselves?
We've accepted the idea that this is a shared responsibility. That when parents can't cope, the government will provide help. Therapy and support, perhaps places children can go occasionally while their parents have a small break, sometime specialized residential care.
Most of us would want to be there for those families.

But the provincial government isn't doing a good job. It's even ignoring a 2007 B.C. Court of Appeal decision that found the government has been breaking its own law by denying help to those who need it.

Mary Ellen Turpel-Lafond, the Representative for Children and Youth, has just reported on how well we're doing in supporting these children and families.

It's not great news.

Families who decide they need help can't figure out where to go. They face a "complex, fragmented service delivery system." That's a big barrier if you're already spending every waking moment caring for your disabled teen.
It's often not even clear where they should start. The Ministry of Children and Families and Community Living B.C., the government's agency delivering services to people with developmental disabilities both have roles, too often poorly defined.

Even if families can find their way to the right office, the problems aren't over. Turpel-Lafond found wait times — or getting needed help at all — are a significant problem.

No one really knows what's going on. Or, as the representative puts it: "There is insufficient public accountability and measurement of child and youth outcomes. At present, with respect to CLBC and MCFD services to children and youth with special needs, it is not possible to decipher who is getting what services, by whom, at what cost and with what outcome. "

And there is the government's shame. It insists that once people turn 19, they are generally ineligible for help if they score at least 70 on an IQ test. Only five per cent of the population has IQ scores that low.

The policy discounts other problems that might keep them from making their way successfully — fetal alcohol syndrome, autism, ADHD, big psychological problems.

The B.C. Supreme Court and the B.C. Court of Appeal have both ruled the policy violates the government's own laws.

But Turpel-Lafond says that continues to be the government's policy, despite the court ruling.
Her report includes examples that show the ridiculous destructiveness of the policy. A 17-year-old boy with a range of serious psychological and behaviour problems was removed from his last foster home after he assaulted the family's six-year-old son.

The Children and Families Ministry had nowhere for him, so social workers arranged a placement in a Community Living B.C. home. There's a lot of support and supervision, so it's expensive — $8,000 a month. He's doing well.

But he's aging out of care, as the social workers say. And although his IQ tested below 70 in the past, a new assessment put him just over the cut-off.

So, once he turns 19. Community Living B.C. says he's on his own.

Social worker and forensic services assessments say he won't make it. The young man is a risk to harm himself or others in the community once he turns 19 and the support is withdrawn, they say.
It's wrong and foolish to condemn someone to a costly failure in life to save money — especially when the long-term cost is much greater.

Turpel-Lafond has offered a useful guide for improvements. The government should welcome the help.

Footnote: Turpel-Lafond criticized policies that see help cut off for children in government care when they turn 19. "A prudent parent wouldn't send a developmentally impaired 19-year-old to the street and the state shouldn't do that," she wrote. Transitional help should continue until they turn 24, she said.
Children's Minister Tom Christensen said the policy will stand.
pwillcocks@tc.canwest.com
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from CBC.ca:

Experts call for national pathology standards to protect patients

Last Updated: Monday, March 17, 2008 | 5:18 PM

A looming judicial inquiry into how over 300 Newfoundland breast cancer patients received erroneous pathology results — and subsequent inappropriate medical treatment — is spawning calls for the development of national standards that would protect patients from such mistakes.

The medical errors made by Eastern Health authority were discovered in 2005 and led to the restesting of the results of thousands of patients.

Dr. Avri Ostry, a pathologist with Queen Elizabeth II Health Sciences Centre in Halifax, told CBC News Monday that pathologists are facing numerous challenges. These include a rapidly expanding workload along with ever-developing technology that requires constant retraining.

"I believe it is indicative of an issue that is certainly national — and that has to do with quality assurance and quality control across the spectrum in laboratory medicine," he said.

Medical experts are calling for national standards that would protect patients from lab errors. "We need to have a focused review of pathology and laboratory services in health care because this is the diagnostic heart of our health-care system," said Dr. Andrew Padmos, chief executive officer of the Royal College of Physicians and Surgeons.

"With such a review, I think we can pinpoint areas where we can innovate, areas where we can consolidate and areas where we can make amends for the lack of investment that has taken place over the last 20 or more years."

But Ostry feels that national standards would be tricky to implement as they would apply to both large academic centres as well as smaller community medical centres. "I'm not sure we could apply the same set of standards to both of them," he said.

He also says that retesting results — in which another pathologist double checks a colleague's findings —isn't always feasible either. He says in smaller centres or in labs where understaffing is chronic, there is no way to provide the necessary expertise to offer a second opinion.

The inquiry, originally scheduled for Tuesday, has been delayed because of
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[Mike & Jean]

Thank you Robert Sell for all your great work on getting all the speeches, videos, news coverage and photos on the "Medicare for Autism Now!" blogspot.http://medicareforautismnow.blogspot.com

I would really encourage you all to have a look and forward it to everyone you know.

[A Father]

Dear parents,

The Medicare for Autism Now! Blog has been updated with pictures and videos of the Medicare for Autism Now! rally that took place on March 2, 2008.

If you missed the event or if you want to hear those great speeches again, take a look at:
http://medicareforautismnow.blogspot.com

Also, if anyone has pictures or video they would like to contribute please email me at: rjsell@telus.net

Thank you,
Robert

[Andrew Kavchak]

Our autism champion in the Senate raises autism several times in a speech yesterday…

Debates of the Senate (Hansard)
Tuesday, March 11, 2008

Study on Impact and Effects of Social Determinants of Health

Second Interim Report of Social Affairs, Science and Technology Committee Adopted

On the Order:

Resuming debate on the motion of the Honourable Senator Keon, seconded by the Honourable Senator Di Nino, for the adoption of the eighth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled:

Maternal Health and Early Childhood Development in Cuba, tabled in the Senate on February 26, 2008.—(Honourable Senator Cowan)

Hon. Jim Munson: Honourable senators, I want to speak briefly about the work of the Subcommittee on Population Health of the Standing Senate Committee on Social Affairs, Science and Technology. As honourable senators know, we travelled to Cuba in January to see first-hand what this tiny country is doing for maternal health and early childhood development.

That trip complemented the work of the committee, which has heard testimony from several experts over the past few months.

As Senator Keon stated when we tabled the subcommittee's report, Cuba is extraordinary in that it is a poor country with excellent health indicators. We know, for example, that poverty and health are linked. However, Cuba seems determined to prove that, at a national level at least, it is not necessarily so.

Cuba shows that poor economic indicators do not need to condemn a population to poor health. Working smart across disciplines, preventing illness and promoting health — all the stuff we know as the nuts and bolts of population health — are more than only words in Cuba. They are more than only policy. They are a way of life.

This is important for Canada, because we spend a lot of time talking about health determinants, about the need to work in cooperation to promote health and the prevention of disease, and we have had success in that respect.

When notions of national programs to improve population health in this country are put forward, such as national child care, PharmaCare, home care or a national strategy for autism, people will often talk about how expensive these programs would be. We use the argument of expense as an excuse for inaction.

Our trip to Cuba demonstrated how ridiculous this type of response is. Canada has a robust economy. We have gone 17 years without a recession. We have the eighth largest economy of the world's 183 nations. We are the only country to rack up 10 back-to-back fiscal surpluses. Economic indicators tell us we are rich. However, the rate of child poverty remains stagnant. We have the same rate of child poverty as we had in 1989.

It was interesting to go to Cuba. Cuba is a country with one of the worst economies in our hemisphere yet with some of the best indicators for child health.

According to UNESCO, Cuba has one of the best infant mortality rates in the Americas, second only to Canada's and much better than that of the United States.

We learned a great deal on this trip. We learned about the effectiveness of neighbourhood action and the polyclinics to which Senator Keon referred. "Health centres" would be a term we could probably use. These clinics have an open-door policy.

When we went to one of these clinics not only did we see people dealing with maternal care and other health issues, but there was one room in a particular clinic where 30 or 40 people, between the ages of 60 and 75, were being taught courses. We asked why. We were told that these were parents and grandparents who were looking for a degree in early childhood development. That is part of the "open door" clinic system in Cuba. That is another example of how the entire family participates in the life of a child.

It is at the neighbourhood level that health promotion and disease prevention efforts are at work. The results are clear. There are healthier mothers and children, better parenting, universal early childhood education and care for disabled children, including children with autism.

Autism is an issue which is close to all our hearts. We went to a small school with 58 students and 58 teachers. Once again, people in Canada would say such a system would be very expensive. This school was located in an environment where there were other schools and playgrounds. The children were picked up in the morning and taken to school. Therefore, there was no stigma of "you are going to be placed over here." It is a very open concept; the teachers were allowed to do their work with these young people. I was very impressed.

The school I visited for autistic children in Cuba would put Canada to shame.

I encourage honourable senators to read the report of the Standing Senate Committee on Social Affairs, Science and Technology tabled by Senator Keon. There is a lot to learn from that document.

The bottom line is that a significant amount of money is not required to effectively help children and to ensure that they get a good start in life. We learned in Cuba that when there is a will, there is a way. Canada needs the will to do more for children. With political will, we would find a way to make Canada's children healthier and better able to seize the opportunities that this great country has to offer.

On motion of Senator Keon, debate adjourned.

[Monika Lange]

Received from MLA Robin Austin, Skeena-Bulkley Riding:

Re: Five for Fighting Music Video

What a great video – an emotional heartbreaker for all of us who have not been personally touched by this affliction. I have passed it on to all NDP staff and MLA’s so hopefully it will at the very least give greater awareness if not raise a few dollars towards the fight.

Best Regards, Robin

[Jenn Ralph]

Hi all,
Just saw this on the Ontario email. It seems American but the same fight to get intensive behavioural treatment covered…good video.
Jenn.

The band, Five for Fighting, is generously donating $0.40 to Autism Speaks
for *each time* the video is viewed the funding goes toward research
studies to help find a cure. When you have a moment, please visit the link
below to watch the video and pass it along to your friends and family.
They are aiming for 10,000 hits, but hopefully we can help them to surpass
this goal.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

[Luke’s mama]

Dione

I have emailed you directly at your email. Just leaving a message here to cover my bases.

Thx.
Luke's mom

MEDICARE FOR AUTISM NOW!!!!!!!!!

[Dione Costanzo]

Hi Luke's Mama,

I would really like to connect with you can you email me at dionec@shaw.ca?

Cheers,
Dione

[Luke’s mama]

Pls watch the news coverage.
so little time for us and so much hard work
to put this rally together.

I could not stop crying during the opening
video or music clip. Shows our kids with a future all because of ABA !!!!!!!!!!!

MEDICARE FOR AUTISM NOW !!!!!!!!!

http://www.youtube.com/watch?v=ugln3lEBPrs

I was there !

Luke's very proud mom

[Author]

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