[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

[Deleted User]

Barbara,
I completely agree with you. This funding plan is just a temporary token pacifier.

Franca
Tessa's Mom

[Barbara Rodrigues]

Hi Everyone:

Now I don't mean to be the 'wet noodle' in all of this but 1600.00 a month? That's not a fully funded ABA program at all as Sabrina said it's about 1/3 or 1/2 depending on your situation of an ABA program. The major flaw aside from all our kids 7 years and older being left out in the cold is that it's not adequate funding for the young ones either.

Let's take a look at Alberta for instance, you (the parent) send in a estimate of your total ABA costs for the year, you then get approval and pay about 5% of the costs per year. I know parents that recieved as individualized funding close to 40,000.00 per year for an ABA program THEN their children are also entitled to around 5800.00 per year in respite PLUS if the child is under 6 years old there's another fund for therapies, preschool, preschool aides.

So I guess it's nice that the government is going to fund a portion of the programs to a 'few' autistic kids under the age of 7 – but forgive me if I am not celebrating – it just doesn't seem like a victory to me. It's better than it was, yes, everyone will be entitled the same amount, etc. but our kids deserve so much more. Fully funded 'medically necessary' autism treatment.

Barbara
Jeremy's Mom

[Deleted User]

Here in Ontario when the IBI program was initiated, we parents who had been running ABA programs were worried too. Would the children be " PUNISHED" for beating their autism and making too much progress to now be considered for the discrimnitory Government IBI program?
Fortunately in many cases, evidence was taken into account when determining eligibility for Government funded treatment. They viewed video records parents had made showing where the children were when they started ABA. In some cases that was two or more years before the IBI program starting accepting children.
This may be a point to be brought up in BC.
Just thought I would throw that out your way.
norrah
aba4u@earthlink.net
fight4aba@hotmail.com

[Deleted User]

Forgot one thing,

Any child who is already recognized as being autistic and is already on the MCF list, even if only diagnosed by a pedicatrician is eligible. In other words the multi disciplinary team is for new diagnosis only. However Sabrina is right, parents just in the process of getting a diagnosis, beware of Sunnyhill and the diagnosis of "PDD". I've heard many horror stories of diagnosis day including my all time favorite…

the mother of a child who had been in an ABA program for a year and who had started before the age of 2 and who had made significant progress but who continued to exhibit self-injurious behaviour, rigidities and stims on an extremely frequent basis was told despite the previous sunnyhill diagnosis of autism, the child was not actually autistic because the child had made TOO much progress. Apparently children with autism (the mother was told) do not actually make any progress – despite all the research studies, law suits and other official documents out there. THe mother replied with this and reminded the team that the child had been doing ABA for a significant period of time but was assured that none of this mattered for even then, children with autism don't actually make progress.

Those of us whose children are making progress, apparently are kids aren't actually autistic. Oh, how reassuring!!!

with a roll of the eyes, I once again sign off

Michelle

[Deleted User]

A small addendum to Sabrina's post as well as those before it…

The cutoff age is actually the month that your child turns 7 so children who are ages 6 AND under are eligible. I urge anyone who's child is within that bracket to call their social worker if they have not been notified of this.

I too have tried to get a list of service providers and have had no luck, it is supposed to be posted at http://www.autismbc.ca

While I have not yet seen the list, I have seen their qualifications for people who are able to be paid out of these funds, these include Behavioural Consultants who must be either a registered psychologist, masters of education, SLP or masters degre in a closely related field, with strong behavioural background workign with young childreen with ASD and knowledge in ABA or an indificual who has completed training or apprenticeship program under the supervision of an individual with the above qualifications and who has several years direct experience designing and implementing tretament programs for young children with Autism Spectrum disorder

money can also be used to pay behavioural interventionists which is defined as the person who implements an individualized plan on intervention on a one to one basis. They must also be 19 years of age and pass a criminal record check.

It also includes SLP's, occupatioknal therapists and physcial therapists.

And the previous post is right, there is provision for music therapy or horse back riding or other non ABA methods.

My husband spoke with an administrator of the program and she assured us that if our consultant was not already on the list her qualifications were valid. THe qualifications seem loose enough that any valid consultant should be able to get in. Actually they seem loose enough that alot of unqualified people could be eligible as well – Parents shop wisely when choosing!!

The magic number is 1,667 per month for everyone. (and I am curious how the previous post was receiving 1800 a month, talk about the gov being all over the place in regards to funding. THe inequality of the previous system infuriates me to no end… another discussion though).

While this is a big step for those who have children who are eligible, it is only one step in this fight. Our children too will reach that magic age of 7 and guess what, there is no magic cure on that day. We must continue to fight with the parents of "older" children (since when is a 7 year old too old, since when do we give up and turn our back on a child?!?!) to ensure that they too receive medically necessary treatment.

And we MUST remember that this victory was won through their suffering and their struggles. We owe them and the way to pay them back is to continue to remain vigilant about our demand for equality for ALL children with autism.

Thank you to all of you who were part of the AUTON decision, whether in the fore front or background of the fight. This fight is not over.

okay, off of my soapbox now…

Michelle
Mommy and Case manager of two tremendously successful program for Breanna and Griffen

[Sabrina Freeman]

TO: All FEATBC members with children age 5 and under
RE: New government individualized funding program
******************************************************

Hello everyone,

Here is the latest from Victoria.

The BC Government has just introduced an autism individualized funding program for children age 5 and under, called Interim Early Intensive Intervention (IEII). The program gives parents the right to purchase treatment services privately, with strings attached. I won’t go through details of the entire document – it’s important you all read it yourselves; however, I want to caution regarding potential pitfalls to avoid.

The amount of money is approximately $20,000 per year, per child, which should cover at least 1/3 of your treatment program costs. For those who have read FEAT BC's, “Choices in Autism Treatment brief” (CIAT brief, June 2001, … https://featbc.org/ciat.pdf), much of the new government program will sound quite familiar. Unfortunately, MCFD has modified FEAT’s proposed CIAT program in substantive ways that make it quite difficult for parents to access the treatment dollars – they have set up artificial, unnecessary barriers.

Here are issues with the government program that need to be overcome by parents of younger children in this group:

1. The government program requires a “multi-disciplinary” autism diagnosis. Right now, Sunny Hill has an 8-month waiting list for diagnosis, so any new children are going to be faced with a daunting bureaucratic barrier. Make no mistake, the Sunny Hill bottleneck (unofficially) has been designed to ration autism diagnoses. It has been in place for years, intended to save government money. Now, centralized, government run diagnostic facilities are the gatekeepers for the new IEII. This will delay and make it harder for you to access funds allocated to the new individualized funding program.

2. Parents can only hire service providers on the government “List.” If you are a qualified service provider, please make sure that you are on the list. If you are not, get a Service Provider Self-Referral Form (available from the Autism Society of B.C., Ph. 604-434-0880) and send it in. Parents using service providers who are not on the list should start lobbying heavily to have them added. The Autism Society of B.C. is DEEPLY involved in this latest government program, so give them a call and demand they help you get your service provider on the government list.

I’ve attempted to get a copy of the list … no luck so far. The minute anyone gets a copy, please send it to us so we can distribute to families.

Despite the hurdles, I do believe that this is a significant evolution in the way government’s social services people usually do business.

Important in the flurry of this latest news, I’d like to thank all the FEAT parents who have worked hard, behind the scenes, writing the CIAT brief and – crucially – advocating for and representing the individualized funding program at all levels of government. I know it is far from perfect; however, it is so much better than what our children have had to this point.

Bureaucratic barriers can be dealt with. Anyone with a child on the waiting list for Sunny Hill, please contact me. We can offer a few ideas on how to deal with the waiting list problem.

For parents of children over 6 … please don’t despair, it’s not over yet ;-)

Sabrina Freeman, Ph.D.
Executive Director
FEATBC

_______________________
NOTE: I’ve been told that the information packet is available either through social workers, local Community Living Services offices, or the Autism Society of B.C.

The two documents are called:

– Message to Parents of Children Diagnosed with Autism Spectrum Disorder (May 30, 2002)
– Parent Information Bulletin: Individualized Funding for Children Diagnosed with Autism Spectrum Disorder (May 30, 2002)

If you have any questions regarding this program, I urge you call the Autism Society of B.C., official resource of the Ministry of Child and Family Development, Ph 604-434-0880 or 1-888-437-0880
_______________________

[Carol Ramey]

Our son is starting grade one in September,
and is entitled to 12.5 hours of aide time.
Anyone have any suggestions on how to go
about getting this increased? Has anyone
successfully got a full time aide for their
autistic child?

When our son started kindergarten we
successfully lobbied our school district to hire
an ABA aide to work with him. They have
generally been very supportive.

Any thoughts or suggestions would be
appreciated.

Carol Ramey
cramey@shaw.ca

[Melodie Pilloud]

Barbara, I just wanted to tell you that I love your poem and that it brings tears to my eyes when I read it. You have a beautiful heart and soul. Keep it that way always. Melodie

[Pete Stelmaschuk]

Thanks Barbara.

[Cory McLaughlin]

Well, it has certainly been an interesting 24
hours on the chatboard.

First, I apologize if I have violated any
chatboard rules. My intent was merely to
share an idea about what MY FAMILY AND
FRIENDS chose to do to try to bring an issue
to our MLA's attention. I believe I stated in my
original post that it was "just a thought"… I
respect diversity amongst this group and
recognize our common goal is for the children.

Secondly, no, Dave, I won't shut up. I have
spent the past year fighting for my son with the
local school district for rights – and won on
some issues because I did NOT shut up. I
have also managed to secure some
government funding for my son because I did
NOT shut up.

As far as I'm concerned this topic is closed for
me but I'm sure others have things to say…

Cory McLaughlin
Liam's Mom

[Author]

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