[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]

From http://www.globeandmail.com, Online Edition, December 20, 2002

**************************************************
Waiting for autism care ruled unacceptable

By ALLISON DUNFIELD

Globe and Mail Update

The Newfoundland Health Department was ordered to
eliminate the waiting list for all autistic children in the
province in a decision handed down by the provincial Human
Rights Commission this week.

The decision was prompted by a complaint by grandmother
Gloria Sparkes in October 2000 on behalf of her grandson,
Brandon Sparkes.

Brandon was diagnosed with autism when he was three years
old and was referred to a provincial behavioural-analysis
program.

He was eventually accepted into the program, but he was
placed on the waiting list for one year.

The program is recommended treatment for autistic children.

A statement from the Commission said that "Brandon was
placed on a waitlist for one year even though there was
evidence that early intervention is critical."

Adjudicator Valerie Marshall said in her Dec. 18 ruling that
the Department of Health and Community Services must
provide funding sufficient to eliminate the waitlist for applied
behavioural analysis for all autistic children in the province.

Gladys Vivian, executive director of the province's
human-rights commission, told globeandmail.com that the
waiting list is approximately 15 children at a time.

She said the commission's decision further orders the health
department not to cut money for programs for children with
autism.

The adjudicator also noted in her decision: "As to the
respondent's suggestion that a reduction in services to autistic
children may be required to comply with an order to eliminate
the waitlist, the board wishes to make it perfectly clear that
this order contemplates further funding to the autistic program
as it is presently offered; this order does not contemplate a
reduction in the present service as it is now delivered to
autistic children."

Ms. Marshall ordered the health department to pay Brandon
$3,000 in general damages.

Ms. Marshall also said that her decision did not mean that all
waiting lists for medical services in the province are
discriminatory.

The Department of Health and Community Services has 30
days to either comply with the decision or to appeal, Ms.
Vivian said.

Newfoundland Human Rights Commission ruling (PDF file)
http://www.gov.nf.ca/hrc/Press%20Releases/press.sparkes2.PDF

[Deleted User]

Here's a letter I sent to my social worker that just recently told me I was at the top of the list for behavioral services. I haven't heard from her for over 2 years.

Dear Social Worker,

Could you forward this to your supervisors.

I must direct my outrage to someone and since you are all the first line of this Governments' Defense, the buck has to stop with you. I realize you can't change policy BUT it is up to you to express this outrage from not
only me but from ALL PARENTS of AUTISTIC CHILDREN OVER 6!

Thank-you for your offer to provide behavioral services to my son who is 7, (we've only been waiting since he was 2),but unfortunately the services you are offering from the Laurel House or Gateway, have been DISCREDITED by the courts as far as providing treatment for AUTISM.

I already have behavioral services provided by the EARLY AUTISM PROJECT, and want this gov't to fund those services. You see my son started with
this service provider only one year ago and already he is testing in the normal ranges in his cognitive abilities. To date, we have paid everything as far as my son's treatment but one day he will be paying taxes because of it.

I could yell, scream, plead, beg, fight…… but what good would it do?
Surely one of you have a moral conscience and will help us parents by doing the right thing for our children?
Fund the BEST PRACTICE TREATMENT!

How many cries for help will it take?

…….'s Mom

[Deleted User]

**Monday Dec.9/2002 New Westminster City Council Meeting — motion put forward by New Westminster City Councillor Casey Cook, it passed unanimously:

Whereas a recent B.C. Court of Appeal decision upheld the original B.C. Supreme Court decision of the Auton case (year 2000), whereby it was determined that for autistic children the Province was in breach of the Charter of Rights, and

Whereas, throughout this hard-fought battle with the Government of the day, the then Opposition Liberals pledged unequivocal support for all children and families living with Autism, and upon election promising justice for these families, and

Whereas, the current government is now seeking leave to appeal this most recent verdict to the Supreme Court of Canada, a decision which effectively further delays justice for autistic children and their families across the province,

Be it resolved, that this Council write the Premier and the Attorney-General to express extreme disappointment in this most recent development and request that, in the interest of justice, the government rescind the request for leave to appeal the Auton decision to the Supreme Court of Canada, and further,

That this motion be forwarded to our local Member of Parliament, our M.L.A., and our local Board of School Trustees, for their support, so that we may show a strong, united New Westminster opposition to this action; and that this motion be circulated through the U.B.C.M. to encourage other Councils and school boards to voice the same to the Premier,the Attorney-General and to their (the councils and school boards) respective M.L.A.s .
————————————————–
*fyi — for those who aren't familiar with U.B.C.M., it stands for the Union of British Columbia Municipalities.

[Deleted User]

B.C. Liberals still confuse wrong for right in autism case

Vancouver Sun

Friday, December 06, 2002
ADVERTISEMENT

The Liberals are at it again. Up is down, black is white, and B.C.'s most vulnerable people aren't getting any money because the government's spending it on the wealthy.

The latest in skewed priorities is the government's decision to appeal the matter of funding for autism therapy to the Supreme Court of Canada.

In October, the B.C. Court of Appeal ordered the province to pay for the intensive treatment, known as Lovaas therapy. It involves up to 40 hours of treatment a week and costs $60,000 per child per year.

Despite its high cost, studies suggest that the therapy is highly effective: The total cost for care of untreated children over their lifetimes is three times that of children who receive the therapy.

So, as we said when the Liberals took the case to court, refusing to pay for the treatment makes no financial sense. It makes no ethical sense either, since the government has an obligation to help its most vulnerable citizens. But this is an administration that chooses to continue to give subsidized drug benefits to wealthy seniors while cutting funds for homecare and nursing homes that aid poor seniors and the seriously ill.

The ministry of the attorney-general said it's not concerned with the specific funding order, but with the broad implications of the Court of Appeal's decision.

We warned the Liberals of exactly that. At the time of the B.C. court's ruling, we noted it could establish a "positive right" to government funded treatment, a dangerous precedent that could open the floodgates and lead to numerous plaintiffs claiming rights to a vast panoply of treatments.

We also noted, however, that the precedent would never have been set had the government done the right thing and funded the autism therapy in the first place.

But where up is down and black is white, it's no surprise that they confuse wrong for right.

© Copyright 2002 Vancouver Sun

[Mina Tabrizi]

ABA THERAPISTS NEEDED!

We have an opening for a patient, cheerful and energetic lead therapist who is willing to work with our 5 year-old son who has been in ABA therapy for 2 years. He is fairly high functioning and verbal, gentle, cooperative and willing to learn.

Every session will be 2-3 hours in length and held 2-3 times per week; including every Saturday morning. It is also mandatory to attend our monthly meetings. Salary will vary depending on experience. Good references are required! Our consultants are Andrea Sharp from Autism Partnership and Dr. Glen Davies from ABLE Clinic.

If you’re interested, please fax your resume to Mina at 604-291-0488 or call 604-926-0288

[Deleted User]

A little more light scientific reading for the season. Enjoy, and happy holidays…

Subject: New Chemical Element Discovered

A major research institution (MRI?) has recently announced the discovery of the heaviest chemical element yet known to science. The new element has been tentatively named "Governmentium." Governmentium has 1 neutron, 12 assistant neutrons, 75 deputy neutrons, and 11 assistant deputy neutrons, giving it an atomic mass of 312. These 312 particles are held together by forces called morons, which are surrounded by vast quantities of lepton-like particles called peons. Since governmentium has no electrons, it is inert. However, it can be detected as it impedes every reaction with which it comes into contact. A minute amount of governmentium causes one reaction to take over 4 days to complete when it would normally take less than a second. Governmentium has a normal half-life of 3 years; it does not decay, but instead undergoes a reorganization in which a portion of the assistant neutrons and deputy neutrons exchange places. In fact, governmentium's mass will actually increase over time, since each reorganization will cause some morons to become neutrons, forming isodopes. This characteristic of •••••-promotion leads some scientists to speculate that governmentium is formed whenever morons reach a certain quantity in concentration. This hypothetical quantity is referred to as Critical Morass.

[Julie Ng]

I found the official release.

BC Govt. Supreme Court of Canada appeal of Auton Case.

Regards

Joachim Pang

http://www.news.gov.bc.ca/default.asp?organisation_obj_id=0b00921e80002cb1

PDF Version
http://www2.news.gov.bc.ca/nrm_news_releases/2002AG0090-001049.htm#

INFORMATION BULLETIN

For Immediate Release

2002AG0090-001049

Nov. 29, 2002
Ministry of Attorney General

GOVERNMENT APPEALS AUTISM DECISION

VICTORIA – The government is seeking leave to appeal to the Supreme Court of Canada a B.C. Court of Appeal decision that found the province is constitutionally obligated to fund behavioural therapy for children with autism.

On Oct. 9, the B.C. Court of Appeal upheld a lower court ruling that said that as long as government is funding medically necessary services provided by doctors and allied health-care practitioners, it is also obligated to fund other services related to treating all serious illnesses or disabilities.

The government is not taking issue with the funding for autism treatment generally. 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.

The government is committed to providing medically necessary services for all British Columbians. In the past year, the number of children with autism receiving early intervention therapies through government has increased from 75 to over 500. Government is providing individualized direct funding to families to help with the costs of behavioural treatment and intervention programs of their choice. Families can also use contracted services offered through the Ministry of Children and Family Development. The ministry has increased spending for early childhood and family development by $20 million to protect and support those children who are most vulnerable.

-30-

Visit the province's Web site at http://www.gov.bc.ca/ for online information and services.

Media

contact:
Curt Albertson

Communications Director

250 356-1196

[Julie Ng]

I just heard on radio (AM-News1130) that the BC Provincial Government will be appealing the Auton decision to the Supreme Court of Canada.

Has anyone else heard anything?

Joachim Pang

[Deleted User]

In reply to my original post (below) this is my opinion only. I like many other parents feel strongly on the MSP subject.

"I say true, now let's see their flexibility. This was a direct quote from our province. It's time for our province to correct the wrong and make MSP NOW for all chidren with autism (and their Lovaas providers). I think we should not accept anything less from our government by rejecting any funding from other sources as a group and keep this in the public spotlight. My two cents as always."

[Deleted User]

In response to

"We know that we can do the best locally for our patients in the province," she said. "Something we are going to be absolutely adamant about (is) that the provinces have the flexibility to provide the programs we know our patients need."

I say true, now let's see their flexibility. This was a direct quote from our province. It's time for our province to correct the wrong and make MSP NOW for all chidren with autism (and their Lovaas providers). I think we should not accept anything less from our government by rejecting any funding from other sources as a group and keep this in the public spotlight. My two cents as always.

[Author]

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