[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]

A large number of families filed a new lawsuit in Supreme Court against the BC Government on Thursday (02/27/03).

BCTV covered the story. The video can be viewed at this link:
http://www.featbc.org/files/media/video/BCTV022803/Jean.mov

CKNW’s Bill Good Program interviewed Jean Lewis on this issue. Audio is available at this link:
http://www.featbc.org/files/media/radio/Good022803/Jean.mov

[Isaac]

Parents of kids with autism filed a new lawsuit yesterday (Thursday 02/27/03) against the BC Government.

FEAT BC Director, Jean Lewis, was on CKNW’s Bill Good program talking about close to two dozen families forced to go back to BC Supreme Court for autism treatment (this clip is highly recommended).

The direct link to hear the interview is here:

http://216.18.67.21/20030228_11.wma

Please scroll to about 42 minutes into the clip for the autism interview.

(Note: Windows Media Player is required to hear the radio program)

[Deleted User]

The press release on individualized funding for children aged 6 to 18 is available from:

http://www.mcf.gov.bc.ca/media_site/breaking_news.htm

Have a look.

If you are a parent who has a child reaching the "magically cured" age of six and are about to have their funding cut from $1667/month to $500/month and you are interested in networking with other parents in the same situation, I would like to hear from you.

Please email me directly at himright@aol.com

For me, I don't remember getting a note from our psychologist or our pediatrician telling us that it was OK to cut our daughters treatment by 70%. The government seems intent on interfering with my child's medical treatment without seeking the input of a medical specialist. Hmmmmm……..I think I am going to talk to a lawyer.

Justin Himmelright

[Deleted User]

The press release on individualized funding for children aged 6 to 18 is available from:

http://www.mcf.gov.bc.ca/media_site/breaking_news.htm

Have a look.

If you are a parent who has a child reaching the "magically cured" age of six and are about to have their funding cut from $1667/month to $500/month and you are interested in networking with other parents in the same situation, I would like to hear from you.

Please email me directly at himright@aol.com

For me, I don't remember getting a note from our psychologist or our pediatrician telling us that it was OK to cut our daughters treatment by 70%. The government seems intent on interfering with my child's medical treatment without seeking the input of a medical specialist. Hmmmmm……..I think I am going to talk to a lawyer.

Justin Himmelright

[Isaac]

A postscript to the previous post on the Squamish Chief article, 'Waiting for Ted to Call.'

The Geddes family actually said,"Without effective treatment autism is a life sentence," not "Autism is a life sentence."

[Isaac]

Here’s a worthwhile article for the discussion group. It’s from the Squamish town paper about an MLA who seems to have forgotten he works for constituents (the article is reproduced at the bottom of this post, from http://squamishchief.com).

The piece is appropriately entitled ‘Waiting for Ted to call,' about a West Vancouver family struggling with autism and dealing with a neglectful MLA, Minister of State Ted Nebbeling, who never returns their phone calls; must be very busy with the IOC and all.

While reading the Squamish article, one can’t help but feel a painful sense of irony. When in Official Opposition, Ted Nebbeling embraced a pioneering advocacy role in presenting the autism treatment struggle before a hostile NDP government. Mr. Nebbeling was the first politician to speak out formally for autism treatment rights in the Legislature, at a time when not a single Liberal or NDP politician would take up the cause. Much to his credit, Mr. Nebbeling welcomed a FEAT BC delegation to Victoria in 1998 and presented their 8200-signature petition to the Premier, urging that ‘medically necessary’ treatment for autism be publicly funded. Long before families were forced into legal action for redress of government discrimination and neglect, MLA Nebbeling stood alone and apart in going on record for autism treatment rights. His powerful speech in the BC Legislature on behalf of constituents Allison and Ben, was unprecedented.

[it can still be viewed at this address –> https://featbc.org/files/lobby_and_advocacy/Ted_Nebbeling_BC_Liberal.ram
… and, the CBC TV News story about the Nebbeling presentation in the Legislature is here –>
http://www.featbc.org/files/media/video/CBCNEWS_06_01_98.ram

Fast forward to 2003 and Nebbeling’s sharp 180-degree turnabout on autism. This MLA now doesn’t return phone calls on autism issues and his memory lapse includes a shocking delusion that Liberals actually supported the NDP’s appeal of the Auton case in August 2000. In fact, Liberal MLA’s were trying to out compete each other in August 2000 for the best ‘righteous indignation’ sound bite regarding the NDP’s appalling war against children with autism:

1) Liberals and Autism, on the record –> https://featbc.org/downloads/brokenpromises.pdf)
2) Liberal press release –> https://featbc.org/downloads/release_07_28_00.pdf)

WARNING: “The heady atmosphere in government may cause amnesia — please use caution.”

It would seem amnesia is an epidemic in BC politics, especially where autism is concerned. Mr. Nebbeling has forgotten the struggle of his constituents, who daily brave their children’s autism. He’s forgotten the cause of publicly funded autism treatment he so nobly championed while in Official Opposition and … Ted Nebbeling has also forgotten what Liberals once opposed stridently — the NDP appeal of the landmark Auton ruling. This hypocrisy is the high-octane fuel of public cynicism in politics and it’s outrageous. Constituents in West Vancouver-Garibaldi should be disturbed and demand better of their MLA.

As an aside, a simple message for Mr. Nebbeling and fellow Liberals might read something like this: “remember Diefenbaker.” For benefit of the younglings in our discussion group who may have been away from Canadian History class that day, Diefenbaker was the Prime Minister who won an unprecedented electoral landslide in the go-go 60’s (yes, before the swavo PM made a rose-in-lapel de rigueur). But alas, Diefenbaker was a one-hit wonder … “Deif the Chief” was sabotaged by a permanent Ottawa bureaucracy he neglected to summarily fire after he was sworn in. His government was wiped out in the next Federal election. Are BC Liberals making the same mistake? If autism policy is the ‘canary in the cage’ this is very much an open question.

A landslide electoral victory is never a guarantee of permanent power, especially if one allows the bureaucracy of a former, failed government to remain intact and hold sway over policy. In our case, the same top-dog bureaucrats driving the autism train during the NDP days are still firmly in charge (even getting post election promotions, no less.). All this is perfect logic if one wants to be found in contempt of court … or if government wants to be “Deifenbakered” come the next election.

Isaac (Miki’s Dad)

***************************************************

‘Waiting for Ted to call'

MLA denies parents' claim Liberals changed tune on funding for autistic children

By Tim Shoults, Reporter

A Squamish family is looking for answers from their MLA on what they see as a flip-flop by the B.C. Liberals on funding for autistic children ó including their son.
But more than that, they're just hoping to hear from Ted Nebbeling.
Dan and Jenn Geddes's son, Jaiden, was diagnosed with autism in 2001. Autism is a biological disorder of brain development, usually identified between ages two and three, and affects approximately one in 2,000 people. There is no known cause or cure for the disease.
Children with autism exhibit marked deficits or excesses in communication, social interaction, interests and activities that can range from severe to mild. Without effective treatment, autistic people face a bleak prognosis of a life of isolation and often institutionalization.
"Autism is a life sentence," said Jenn. "It's like someone comes in and steals your baby's soul."
When Jaiden was diagnosed, he had no receptive language (to indicate what he understands) or expressive language and was indifferent to others, usually ignoring them as if they were not there.
But last spring, Jaiden started an intensive therapy program called Applied Behavioural Analysis (ABA). The therapy, which takes place in the Geddes' home 35 hours a week, has led to major improvements in Jaiden's behaviour, according to Jenn.
"Ten months ago Jaiden was not able to understand any language," she said. "Now, he is able to identify hundreds of objects and actions, body parts, shapes, colours, familiar people and simple instructions.
"It's really helping. It's going slowly, but it's working."
The key to ABA's success is starting it while children are young (ideally before age five) and ensuring the therapy is intensive (35 to 40 hours a week). Nearly half of children in ABA therapy recover enough to interact relatively normally with other children.
In Jaiden's case, they hope to bring him into kindergarten this fall ó something that wouldn't even have been possible a year ago. "We want him to be there to interact," said Jenn.
The cost of intensive ABA is staggering ó up to $60,000 a year ó and is currently only partially funded by the provincial government for children up to age five only.
In the Geddes' case, they're paying about $45,000 a year for the therapy, with about $20,000 covered by the provincial government.
Jenn works full-time and Dan owns his own business, but the cost of treatment has still forced them to cash in their retirement savings and seek help from their families. The couple is looking at selling their house next spring to continue the treatment.
When Jaiden turns six in November of this year, the government funding is cut off completely ó yet he requires another three to four years of therapy, says Jenn.
But what has the Geddes most upset is what they call the Liberals' change of heart on funding from when they were in opposition and their MLA's silence.
Parents of autistic children filed a class action lawsuit, Auton et al., in August 1999 to force the then-NDP provincial government to fund ABA treatment. The B.C. Supreme Court ruled in the parents' favour in July 2000, but the government appealed to the B.C. Court of Appeals on the grounds that the courts should not determine government funding of programs.
At the time, Liberal opposition politicians, from soon-to-be premier Gordon Campbell to Colin Hansen, now Minister of Health Services, castigated the NDP for appealing the case.
West Vancouver-Garibaldi MLA Ted Nebbeling was also vocal on government funding for autism while in opposition. In 1998, he presented a petition signed by more than 8,000 parents to the Premier on behalf of Families for Early Autism Treatment (FEAT). At the time, the government provided no funding for ABA.
"I am appalled with the lack of government understanding of a program that has been proven to help these children," Nebbeling said at the time. "To deny children a quality of life otherwise unattainable, condemning them to a life sentence in an institution, this is a negligence which should be considered criminal.
"How can we deny a child our help, when we know a proven treatment method?"
Nebbeling later said in the Legislature that autism was a medical condition, not a social problem and praised the merits of ABA therapy.
"The key is that it shouldn't be an issue of whether it is worth the money or we can afford the money," he said. "The thing is that we know that there is not a cure, but there is a mechanism to make the quality of life so much better for patients with autism and for the families who live with them, and I think that's what we have to focus on."
Upon taking power in May 2001, however, the Liberals allowed the Auton appeal to continue. In October, the B.C. Court of Appeals unanimously ruled in the parents' favour that the government policy discriminates against children with autism and ordered the province to fund medically-necessary treatment for autistic children regardless of age.
On Nov. 29 of last year, the Liberals announced their intention to appeal the ruling to the Supreme Court of Canada.
"The government is not taking issue with the funding for autism treatment generally," the Ministry of Attorney-General said in a news release on the appeal. "Rather, the government has decided to appeal the decision's broad implications for how government funds and delivers not only health-care services, but also social programs.
"The court decision affects government's ability to determine which services and programs it will fund. This expansion of constitutional principles constitutes a serious and unprecedented intrusion into government's policy and spending priorities."
Dan and Jenn Geddes say they have been trying to arrange a meeting with Nebbeling for more than a year to discuss their case, but they haven't heard from their MLA in person in the last year and a half, despite asking for a personal response through his office.
While they have received response letters from several ministers and Premier Gordon Campbell as well as front-line agencies and workers, they still want to hear from Nebbeling himself.
"Where is he?" asked Dan. "What's it take to phone back? The comfort for a citizen starts with somebody listening. I have to talk for Jaiden. He can't talk to Ted. Just like I have to represent Jaiden, Ted has to represent me and Jaiden to the government and represent the government.
"He's a conduit to the people. Where is he?"
Contacted by The Chief Monday, Nebbeling said that he has done all he can for his constituent.
Staff from Nebbeling's office have responded to all inquiries by the Geddes family and have encouraged them to take their case to Linda Reid, the Minister of State for Early Childhood Development, who is responsible for autism funding.
Nebbeling added he has spoken to Geddes personally "a couple of times in the past" as well.
"We have done so much on behalf of Mr. Geddes, but Mr. Geddes wants more and more," Nebbeling said. "We have responded to his letters, petitioned the ministerÖunfortunately for him, the program is finished at six [years] and other programs come into play then. It is not that these kids are abandoned at that point.
"He keeps writing back, but there is a point where we say there is nothing we can doÖthe bottom line is, he doesn't get the answer that he wants."
Nebbeling also denies the Liberals changed their position on autism funding. He said the Liberals supported the NDP's appeal in 2000 because they agreed that the courts should not decide which programs government should fund.
"That would be a horrible precedent," he said.
Nebbeling said he could not comment on the Auton case as it is before the courts.

[Susan Burns]

oh my…..I have just found a deaf therapist……and this news makes me cry….any support for James' treatment is welcomed. I was unable to attend last night's meeting but I am looking forward to further details. Susan [James, Harry and Teresa's mom] spbpt2002@yahoo.ca

[Deleted User]

I just came from the meeting in Surrey about the Transition Steering Committee and the New Approach. Robin Syme was quoted as saying that School Age Autistic children would be getting funding April 1, 2003, but that it would be substantially less than the 1600 per month that children under school age recieve now. She said that there wasn't any "proof" that older children will improve from treatment.

Let me see……..

Us parents of older children (that is above the age of 6)with autism are supposed to pay out of our own pockets for treatment and then pay for the testing to give them "proof". How else would they get the "proof" when they don't fund the treatment? It's ludicrous! Why not put the money (millions I believe) that they are using to test the efficacy of the EIBI, into treating older children with autism? Why re-invent the wheel? The tests with younger children on an intensive program have already been done.
Sorry to vent, but it just seems that the gov't is constantly trying to come up with ways to "not" help our kids.

Good News though! I have paid for the therapy and I have paid for the testing and the results are incredible!!!

[Nancy Walton]

Sorry for the late reminder. Tonight in Surrey,
feb 24, 7-9 pm is a public meeting for
discussion on "A new vision of community
living". This meeting is presented by the
MCFD and the Interim Authority for Community
Living British Columbia. The latter is the
group that will be responsible for providing
individualized funding for autism treatment
(even though this funding, in my view, should
be coming from Ministry of Health).

This meeting will "provide an overview of the
recommendations and key considerations
identified by the CLTSC, and present an
opportunity for stakeholders to share
questions, comments and concerns around
the contents of the report. Feedback from the
meeting will be provided to Minister Hogg to
assist in decisions made regarding the new
Authority. It will also be posted on the ministry
website"

They wrote that a "plan language" summary of
the report is available at
http://www.mcf.gov.bc.ca/change/cltsc_report.htm

The meeting is at the Surrey Conference
Center, Building 4 Room #1, 9260 140th
Street, Surrey.

I give this a strong recommendation. Try to
send at least one family member.

Nancy Walton (Casey's mom)

[Deleted User]

Autism + the Law I – Defending Your Child's Legal Right to Treatment Funding + Recouping Your Costs.

Greetings ­-

We are Tamara Leger + Anissa Lalani and we are the co-facilitators of the North Shore Autism Society Community Group. We would like to invite you to join us for scintillating discussion around the following "hot topics" in Autism.

Our next meeting is Monday February 10th ; 7-9pm at the West Van Library(Marine Dr + 20th) in the Peter J. Peters Room. Our topic is Autism + the Law I – Defending Your Child's Legal Right to Treatment Funding + Recouping Your Costs.

This will be in a Panel Discussion format. Auton Case Legal Eagle Birgitta von Krosigk, FEAT Founder Sabrina Freeman, and Auton Case co-litigant Jean Lewis will be in the house!

All are Welcome ­ sure hope you can join us, and feel free to bring a friend! Coffee will provided.

Questions or comments: please e-mail taml@telus or anissalalani@shaw.ca

[Author]

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