[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]

No doubt many have already seen the story in the Vancouver Sun this week. For any who haven't had a chance to read it, a copy is at the end of this post.

Front page in Victoria as well: a well researched feature story on government's controversial pilot EIBI program appeared on the top of front page in the Sunday edition of the Victoria Times Colonist (August 12, 2001). The article is available at this address:
https://www.featbc.org/downloads/Times_Colonist_08_12_01.pdf (361k)

Isaac
(Miki's Dad)

___________________________________________
Vancouver Sun
August 14, 2001

B.C. weighs direct payments for autism
Parents would decide how to spend treatment dollars
Kim Pemberton Vancouver Sun
The B.C. government is willing to consider giving money directly to parents
of young children with autism as part of its new $16-million Early Intensive
Behavioural Intervention program.
The concept, which would be a first in B.C., means parents would be able to
spend the money they receive from the government in the way they consider
best to treat their child's autism, a neurological condition that causes severe
language and behavioural impairment.
Minister of State for Early Childhood Development Linda Reid said in an
interview that although the government is currently implementing
community-based programs for children with autism — from ages two to six
— it is willing to consider alternatives such as funding parents directly to
provide their own treatment programs with professionals they choose.
"The door is open and we are willing to explore this option. This
[individualized funding] is an area the previous government wouldn't have
touched," she said.
"There is no one size fits all. You have to be able to offer choice so if we can
put individualized funding as one of the options, that's fabulous."
But she cautioned not every family would want to have individualized funding.
"Not all of us can run a 40-hour intensive program in our home. There are
parents who will want to do that and others who will want to go to an existing
program. We will do our best to satisfy both schools of thought."
Individualized funding for parents of children with autism has been lobbied
for by Families for Early Autism Treatment of B.C. (FEAT) and the Autism
Society of B.C.
"This would be a first in B.C.– for individuals or families who have good
programs to bring forward their own programs to get funding," said society
program director Clair Schuman.
"The new government, across the board, has expressed an interest in parental

choice. We welcome the opportunity for people with autism."
FEAT spokesperson Sabrina Freeman said it is critical for individualized
funding to be offered immediately.
"It would be so easy to clean this problem up by giving individualized funding
but the leftover bureaucrats from the NDP days are against the idea. Their
idea of individualized funding is to have parents go to one of the sites that
already have gotten the money and choose from a variety of 'treatments' and I
use that term loosely," she said. "That is not parent choice."
(The government was ordered by the B.C. Supreme Court last February to
provide early intervention programs for children with autism after four
families sued on behalf of all B.C. children. Both sides are appealing the
ruling.)Tuesday, August 14, 2001 Vancouver Sun – Top Stories Page: 2
FEAT prefers a type of treatment pioneered by Dr. Ivar Lovaas at the
University of California at Los Angeles. It involves intensive interaction with
therapists.
Freeman estimates there are 200 B.C. families who are already privately
funding their own Lovaas-style programs, at a cost of $25,000 to $60,000 a
year.
Since the government announced it will provide $16 million for early
intervention programs for young children with autism it has awarded
contracts to three specific community programs so far. They are in Victoria,
Delta and the Okanagan. Seventy-five children are now in those programs, but
about 450 children qualify for early intervention dollars.
The children in the three existing programs are getting at least 20 hours of
intensive therapy each week.
Pat Mirenda, associate professor at UBC's department of education,
counselling, psychology and special education, said there is no question early
intervention is critical for children with autism.
"It makes a big difference…. Right now we have young kids, [from ages two
to six] who were getting nothing, going to fairly substantial programs," she
said.

[David and Barbara McLeod]

Hi Everyone,

Just passing on a message I received from a fellow FEAT member this am. For very interesting reading on government thinking about autism treatment and "things to come", log on to http://www.legis.gov.bc.ca/ and read the Hansard entry for Thursday, August 9 am. Go to page 377 Estimates: Ministry of Children and Family Development and the input of the Honorables Gordon Hogg and Linda Reid and their responses to questions put forward by MLAs D. Jarvis and Ida Chong on behalf of their constituents. (Sooo, they do take our questions to Victoria!). The discussion ranges from about 10:25 through to 11:00. It appears our whispers in the wilderness are being detected on the radar screen. We still have a ways to go to be really heard.

Keep up the good fight.

Barbara McLeod

[Linda Cucek]

I want to congratulate the government also for all the changes that they are making especially Gordon Campbell & Christy Clark. I feel they are doing their best to gradually clean up the health care system. We all need patience!

James has been in the hospital so I have been under extreme stress, so I need to learn more patience towards the government–helping out our Autistic children, and hoping and praying that the older children will get whats due them too.

Regards,

Linda Cucek, James mom

[Sandy & Mike]

I too read the online article in the Vancouver Sun "top stories" http://www.vancouversun.com I was so happy to see that the government is beginning to listen to FEAT parents! They need to KNOW that they would be excluding a large number of children over six that NEED individualized funding to continue their programs and continue to make the gains that are so crucial for their development and progress. These children are not dispensable – they are part of us, with bright futures and they deserve their best possible outcome! There is a light at the end of the tunnel – we are almost there – let us press on. I think it is extremely important for parents with children under six to thank the Liberals for seeing the light and AGAIN ask them to open it up to truly include ALL our children. It will be my very next letter.

Sandy (mother of Jared – a 2.75 year old)

[David Chan]

The first thing I saw this morning, even before breakfast was the front page of the Vancouver Sun story on Individualized funding. I gotta tell you, it was just awesome that someone is finally listening. More Rock and less TALK The new families that are starting now will have such a leg up on all of us in that they WILL be getting started right away with an appropriate course of treatment (i.e. Lovaas). The government at least appears to be making some effort to understand our plight; and that as they say is a good thing.

Alas, every silver lining has a dark cloud attached. I still don't think that they know what to do with children that have been in programs and making tremdous gains by staying on a program that they started when they were four or five and are now way over the mystical age of SIX.

There are 7,8,9,10,11,12,and 13 year olds that are working everyday with their therpist teams that are making measureable gains with their programs. The folks in Victoria has to see to their needs too. These are the children to forge the way for the younger kids that are starting now.
We talk about teams, and consultants working with the kids. What I have observed is that the KIDS themselves work their little fannies off everyday just to be part of our world. These are some of the hardest trying kids in the province.

PLEASE DON'T FORGET ABOUT THEM !!

Dave, 9 year old Pearson's Dad

[Mike & Jean]

URGENT – TO ALL PARENTS

I had the opportunity to attend a meeting last Wednesday August 1st hosted by Robin Syme and others from the Ministry for Children and Family Development. The new Deputy Minister of MCFD asked his policy makers to invite parents to this meeting to hear their input with respect to parent choice.

I would like to thank the new Liberal Government for finally inviting FEAT parents to the table to share their concerns.

The majority of the parents present were parents of children who are eligable for the government's new "EIBI" program as well as parents with children over six the majority of whom are doing Lovaas-style ABA programs. There was also a large contingent from the Autism Society of BC.

Parents were invited to give Robin Syme etal. their 'wishlist' on how to incorporate 'parent choice' into this program which we believe to already be flawed.

I presented FEAT's official position which as you know is as follows:
1) The responsibility for 'medically necessary' autism treatment be moved to the Ministry of Health.

2) The EIBI program be cancelled immediately as it is not sceince-based, it will create government controlled service provider monopolies which are antithetical to parent choice and are hugely expensive.

3) Individualized funding be made directly to families so families can choose their own service provider of choice.

4) Medically necessary autism treatment does not stop at the age of six. It continues for as long as a physician prescribes it.

At the conclusion of this two hour meeting where all participants had an opportunity to speak, the following themes were unanimous:

1) Give individualized funding directly to parents. They will choose their own qualified provider.

2) Given the choice between the 'EIBI' program and individualized funding parent unanimously chose individualized funding.

3) The funding needs to start immediately and carry on as long as needed.

Now is the time for all parents (those there at the meeting and those who were not present) who are in favour of individualized funding to be heard! August 7th is the close date for the second round of RFP responses to be selected as service providers. Later in August, early September it is the governments intention to select from this exercise additional service providers who will be assigned geographic areas to provide 'EIBI' services. This will be the only option available to parents if the present plan continues to proceed without change. FEAT of BC's position has always been clear – parents must have the right to choose the service provider of their choice. Not one who has been deemed appropriate by MCFD.

I urge all parents to contact the following ministers to voice their positions on:

1) individualized funding
2) the EIBI program
3) funding for those over the age of six
4) to thank the Liberal Governemnt for forcing the civil servants to give FEAT members a place at the table.

1) Gordon Hogg – Minister MCFD
e-mail – gordon.hogg.mla@leg.bc.ca
Fax # 250-387-9722
Tel # 250-387-9699

2) Colin Hansen – Minister of Health Service
e-mail – colin.hansen.mla@leg.bc.ca
Fax # – 250-356-9587
Tel # – 250-953-3547

3) Linda Reid – Minister of State – Early Childhood Development
e-mail – linda.reid.mla@leg.bc.ca
Fax # 250-356-8337
Tel # 250-356-7662

4) Premier Campbell
e-mail – gordon.campbell.mla@leg.bc.ca
Fax# 250-387-0087
Tel # 250-387-1715

Please ask for a response from each individual you contact and please send a copy of your letters and any responses to info@featbc.org or fax them to 604-534-9527.

FEAT of BC advocates on behalf of all BC children for their right to medically necessary autism treatment.

The time to act is now!

Thank you,

Jean Lewis
Director – FEAT of BC
Please copy any e-mail co

[Barbara Rodrigues]

Hi Everyone:

This is just a comment (okay it's a rant) concerning the EIBI program and a recent article in our Kelowna/Okanagan Sunday paper. Apparently our region (Kamploops all the way down to Osoyoos) has been granted 1.5 million for it's EIBI program-apparently at a cost of 60,000 per child per year for a measley 20 hours per week of 'eclectic theraputic' therapy.

A parent from Kelowna is stated as saying 'Whether it's called ABA or EIBI, there's not a lot of difference, it's a step in the right direction'.

Now, while I cannot respond to this woman directly I wanted to make a point to all of you out there.

Make no mistake about it, there is MUCH more of difference between ABA and EIBI than it's name. I went to Mr. Kysela's talk concerning what his program involved. First off, he isn't using discreet trials, he doesn't finish the loop off if the answer is incorrect or not responded too- ie: doesn't give an informational 'no' nor does he use errorless prompting. They just start the trial all over. Won't that be nice and clear for our kids, who already don't quite know what we want from them, let's not make learning discreet. Mr. Kysela doesn't like the use of the word 'no'. The program is also not 'behavior based' and apparently there is the use of 'natural teaching'methods developed by Mr. Kysela that will also be used. We also have first hand knowledge of this program as we were also subjected to it(doesn't work).

Next off, in those 20 hours of 'eclectic therapy' they are using sensory integration techniques which is another unproven (mind you I know from experience it doesn't work) method.

My point to this is, we have to make sure that the Government and the public understand that this is not a 'first step' in the right direction. This is actually the same crap packaged up with a new name and a very expensive price tag. It involves the same old 'support workers' with their very outdated and untrained views of our kids. In my area, the very people that withheld knowledge of ABA from our son, and told me that they felt ABA was 'too structured' are now the 'new EIBI' program consultants. I am shocked and dismayed that the Liberals are allowing this to go forward.

We cannot allow the Government,nor the public, nor any unsuspecting parent to actually believe that this is in anyway a solution. It's not. It's not what the judge ordered, it's not the way to go.

We have to be prepared to say 'it's not good enough, our children deserve what every other child in B.C. is entitled to regardless of age or family income – accesss to quality health care with a provider of our choice!'

Here in the Okanagan I am amazed at the blind faith of parents who's children sit with no intervention and wait for the 'kindly MCF' to put into place a 'program for their older kids'. It's so sad for those children. In the end it will be those children that suffer. Where oh where is a strong FEAT member in Kelowna, they could sure use you.

Forgive the rant. I am truly disturbed by this.

Barbara
Mother and Advocate to Jeremy

[Lise O’Reilly]

Has anyone used the medical benefits from the At Home program for Lovaas type ABA therapist expenses? If so, please email me at liseoreilly@home.com

Many thanks,
Lise O'Reilly
Philip's Mom

[Deleted User]

Anyone interested in writing letters to politicians to express your views regarding MCF, EIBI or any other issue which affect our children here are some fax numbers that may be of assistance to you:

Honorable Gordon Campbell, Premier
(604) 6605488
Colin Hansen, Minister for Health Services
(250) 3569587
Sindi Hawkins, Minister of Health Planning
(250) 3568269
Linda Reid, Minister of State for Early Childhood Development (604) 7750999
Ted Nebbeling, Minister of State for Community Charter (604) 9810010
Christy Clark, Deputy Premier, Minister of Education (604) 9272051
Geoff Plant, Attorney General
(604) 2414325
Gordon Hogg, Minister of Child and Family Development (604)5414551

Local MLAs telephone numbers can be found in the government blue pages at the back of your white pages phone book.The local constituency office can give you the fax number.

Let's show strength in our numbers. Start writing.

[Sabrina Freeman]

Hello everyone,

Interesting byline came across the desk recently: *Blue Cross Settles
Suit*. Autism treatment will now apparently be covered by health
insurance in the State of Minnesota.

Minnesota Attorney General, Mike Hatch, filed suit against two health
insurance companies for failure to cover mental health claims …
including the cost of autism treatment. One of the two health insurance
companies — Blue Cross — has settled out of court and is reimbursing
the state government in the amount of $8,200,000 for a portion of
rejected mental health care claims (complete text of article is at the
end of this post).

Contrasting sharply with Minnesota, is British Columbia. Unlike that
U.S. state, BC’s health insurance *company* is government owned and
purportedly provides publicly funded, *universal* and *comprehensive*
health insurance coverage. Consequently, in BC there is a clear — and
harmful — conflict of interest in health: Government IS the health
insurance *company*. Regrettably, there is no independent entity to
safeguard against abusive and harmful health insurance practices in our
province. The ironic consequence is that in BC — unlike Minnesota —
it is PARENTS who have been forced to sue the government's Attorney
General (and others) for reimbursement of, *rejected claims* for autism
mental health care treatment i.e. Lovaas-type ABA.

PROBLEM: In effect, our Attorney General, chief law enforcement
official, is *in bed* with the health insurance *company* — the BC
Government ('fox guarding the chicken coop' comes to mind).

Widely accepted (but apparently not by former Children's Ministry
bureaucrats) is that autism is a *health* issue, and as such, its
treatment must be funded by provincial health insurance. The
Government of Minnesota and 'Blue Cross' (a private U.S. health
insurance company) have arrived at an historic agreement to provide
coverage for autism treatment, among other mental health treatments. It
is time for the new Government of British Columbia to show courage and
do the same: work with the Medical Services Commission — our health
insurance *company* — to provide BC children the mental health coverage
private U.S. insurance companies provide for children with autism in
that country.

Individualized *bloc funding* was also recommended by BC Supreme Court
as a way to fund autism treatment. Regardless of the precise funding
mechanism, the Liberal government must adopt a *health care model* for
autism treatment, as recommended by BC Supreme Court — move our
children out of the child protection ministry! The current social
services approach to autism is an abysmal failure.

Significantly, the BC Government continues to violate the constitutional
rights of our children, even though almost a year has passed since the
court handed down its landmark decision on autism treatment. BC has yet
to comply with the July 2000 BC Supreme Court Auton ruling.

The Children Ministry's ‘EIBI’ pilot program is now recognized for what
it is — a fraudulent NDP sham (truth is a very stubborn thing).
Children’s Ministry service providers and bureaucrats will not be
permitted to sabotage a BC Supreme Court ruling. Now is the time to write your MLA and
other key government officials. Let them know what you think about the
unholy alliance of former Children's Ministry civil servants +
contracted $ervice provider$ and anti-Lovaas BC university academics.
Let them know what you think about misguided and incompetent MCF
policies. This new government has an historic mandate; they need to
hear from ALL of you about what you expect them to do … this is the time!

Sabrina (Miki*s mom)

_____________ Article _____________

Blue Cross Settles Suit

[By Christopher Sprung.]
http://www.zwire.com/site/news.cfm?newsid=1971407&BRD=2163&PAG=461&dept_id=438479&rfi=6
<– address ends here.

St. Paul – In a move that may have implications throughout the health
insurance industry, Blue Cross and Blue Shield of Minnesota on Tuesday
announced it has settled a lawsuit brought by the state alleging that
the
health plan routinely refused to pay for mental health care treatment
for children.
While the settlement, which includes an unprecedented new claims
review system, formally acknowledged no wrongdoing on the part of Blue
Cross, it did come with some public words of contrition.
"We*ve failed these families in some important ways," said company vice
president Richard Neuner.
The agreement will result in better coverage for such things as
eating disorders, chemical dependency and autism and will improve access
to
treatment, Neuner said. Last October, Attorney General Mike Hatch filed
suit in Hennepin County District Court alleging that Blue Cross had
violated state consumer
protection and insurance laws by refusing to pay for mental health
treatments and rejecting claims for court-ordered treatment costs which
were then borne by the state.
Under the terms of the agreement, Blue Cross will pay the state
$8.2 million to make up for a portion of those costs for denied claims.
And in an unprecedented move, Blue Cross has agreed to create a
new fast-track review committee to independently evaluate claims for
mental health, chemical dependency, autism and eating disorder benefits
that are
initially rejected.
The three-person committee will have one representative appointed
by the Attorney General, one by Hennepin County Chief Judge Kevin Burke,
and one appointed by Blue Cross.
Under the agreement, Blue Cross must process urgent claims as
soon as possible, but in no event more than 24 hours. Non-urgent claims
must be handled within two business days.
If the health plan denies a claim or does not follow deadlines,
the claim will be referred to the committee for review within 24 hours.
If a denial for chemical dependency or eating disorder treatment
is made because of a lack of medical necessity, Blue Cross will forward
the denial to the committee within six hours.
Within one business day, the committee may vote to overturn or
uphold a claim upon the vote of any two members. The committee*s
decision will be binding upon Blue Cross, but not the patient.
Other key elements of the settlement include:
* Improved coverage for mental health, eating disorders and
chemical dependency.
* Semi-annual audits of Blue Cross records and personnel to
assess the processing of mental health benefits. The audits would be
conducted by a
state-appointed auditor.
* Court-ordered treatment would be covered as medically necessary
as long as it is based on an evaluation and recommendation of a
physician,
licensed psychologist or other specified health professional.
Hatch called the settlement "very significant" and said he hopes
the state*s remaining HMOs and health plans will demonstrate "the same
type of leadership and compassion" and voluntarily follow the lead of
Blue Cross.
"If they don*t I suspect we*ll be back having the same
conference,"Hatch said, issuing a thinly veiled threat that other
carriers could find
themselves the subjects of similar lawsuits. ©Worthington Daily Globe
2001

_____________ End _____________

[Author]

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