[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]

The information for children over the age of 6 is here http://www.mcf.gov.bc.ca/autism/index.htm

I do know it's on a sliding scale and it is for children out of school whose parents want to have behaviour programs out of school hours.

It is only a choice, even if you do qualify parents have a choice to do it or not. Personally, in my humble opinion it's not much, I would much rather deal with MSP. This is the update. Any thoughts?

[Nancy Walton]

Hi, it's me again.

This time I want to encourage everyone running a home based ABA program to contact Michelle and Justin at himright@aol.com (see previou post by Michelle) and I think we should extend that invitation to people with children under 6 as well. My son just turned 5. He has been in therapy for 3 years now. It seems like just yesterday that we started. I thought funding was just around the corner back then. This next year will pass in the blink of an eye and then my son will turn 6 and be "magically cured". This over 6 funding issue is a concern to all of us.

Contact Justin today.

Nancy Walton (Casey's mom)

[Monika Lange]

More information is available regarding the "Extended Autism Intervention Program" on the Ministry's website at: http://www.mcf.gov.bc.ca\media_site\breaking_news.htm

This site has some news about the direct funding model for school age children.

Monika Lange

[Deleted User]

Hello all,

I had a brief conversation with my local MCF contact today about some specific questions I had on IEII elgibility and I wanted to pass on this information to everyone.

1) For all those parents who have children turning 6 this year, you will only get funding until the month your child turns 6, not until the end of the fiscal year as was the previous policy. Hey happy birthday Junior. Now that you are 6, you can't be treated and we don't care what your doctor says.

2) If you have any IEII funding left over, you can extend your contract to give you time to spend those funds. This applies to children who are still eligible and are renewing IEII and to those whose children have become magically cured by reaching the age of six and are no longer eligible.

3) The new school age non-funding package is call EAI (Early Autism something-or-other). Getting this funding will not effect your eligibility for other services which you may already be getting (respite etc.). Apparently some parents have been told this and it is wrong.

4) The paperwork for EAI will not be available until April 1. April fools day, how ironic

Cheers everyone
Justin Himmelright

[Deleted User]

For those parents who are being cut-off from their IEII funding because their children have reached the "magically cured" age of 6 and would like to network with other parents in the same boat, please email me directly at:

himright@aol.com

We have built a small discussion group and we are sharing legal information from lawyers we have been consulting, strategies for approaching your MLA, and any other pressure techniques we can bring to bear on this situation.

This group may also be of interest to parents who have never received IEII because their children are too old and for those who may lose their funding in the next year.

The last budget was the governments opportunity to get in line with the Auton decision and they have chosen not to. For those of you who may be confused by the BC government's appeal to the Supreme Court of Canada; my sources say that the terms established by the Auton decision are in effect in this province until that appeal is heard (if the Supreme Court agrees to hear it).

As the last two posts to this board have noted, we need to be working together to do bring real pressure on the government. If the protest against their lack of action is too weak to bring real pressure to bear, they will continue to act in defiance of our childrens rights to treatment. They have demonstrated this over and over again.

From the BC governments actions, it is clear that the Auton decision has had little or no impact on their attitudes towards our children. The courts have clearly established our children's rights to medical treatment. Now we need to demand that those rights be acknowledged.

Justin Himmelright

[Louise Watson]

I agree with you (the last post) we should all come together and fight for our kids.Mabey if theres tons of us we will get somewhere, I havent got very far on my own regarding funding or getting through to anyone that matters let me know where and when and I'll be there.Louise

[Deleted User]

As the parents of a child with autism. It is so difficult to deal with so many of the situations that arise on a day to day basis. Lack of sleep, our childrens health problems, special diet needs, staying employed, maintaining a relationship. Just surviving is difficult. The stresses that we bear as parents is incredible. One of our members who was a U.S. Marine said that to be the parent of an autistic child is tougher than her days as a Marine. All this that we face is tough enough without us as parents to have to undertake the only treatment possible to help our children, an ABA program. Which is is the responsibility of the Government to fund entirely and to help us as much as they can to organize the program for us. A lot of us have just lost the limited help that we had through the IEP, and seem to have to go through the same struggle all over again. The time might be here that we gather as many parents together as possible and try to get justice through the courts again. We and our children have suffered too much, too long.

[Barbara Rodrigues]

Hi Graham & Everyone:

The first lawsuit by the group of families was actually supposed to try and get it to a class action. This was denied, I am unsure of the reasons but maybe someone else can elaborate. I think it had something to do with the disorder being a spectrum disorder and each child so different, although as I say I am not quite sure.

I also hear what you are saying about the IEII funding but what I was wondering is the Government being even more slimey than they have been already. Now bear with me here – I realize this is medically necessary funding – that it shouldn't be a mess of a little funding from this pot, a little from that, etc. BUT for those of us whose kids were unlucky enough to be 4 years old when the lawsuit was launched who had their funding cut back in 1998 due to the retaliation of Victoria for the lawsuit, who's kids then got cut when the lawsuit was won because oops! they were 6 years old and I guess no one can learn after that- well, we had to get creative in how and what funding was available in order to get a miserly amount of funds.

Okay, now that I have you all confuzed. Here's my point – kids with autism are entitled to certain supports be it either supported child care ( both parents work, the child needs daycare and with extra support needs is entitled to a one-to-one worker) that's a certain amount per month, then say the child is entitled to a youth care worker, a behavioral support worker, occupational therapist, etc. So there's money that can be taken and funneled to the parent for ABA therapy – granted it's not a lot but it's extra money. That is until this is won in the Supreme Court of Canada.

So now the Government comes in with this 'new' money the 500.00 per month right? It's supposed to be above the current monies. Yet, apparently, your child is no longer entitled to the above funds from supported childcare, support workers, etc. and is only entitled to the 500.00 a month.

What I am wondering is this only in our region or is it happening in others. What everyone needs to do is ask their social workers 'Is this all my child is entitled to?' because if thats the case then not only is the Government going against what the Courts ordered but they are actually even cutting our kids funding further than it has been already.

Barbara
Jeremy's Mom

[Graham Egli]

RE: above post from Jeremy's Mom:
Yes, it is true the "new" money announced recently is really a cut in funding to $500. a month. Anyone now being funded will have their current funding stopped the month your child turns 6. The government has decided after 6 years of age that ABA is not very effective. We on the other hand read the same studies they did and deduce that ABA up to 6 is most effective. A big difference in perspective.

In any event, yes, funding has been cut. What people will do to maintain their current therapy sessions which are based on current funding, once this is cut I do not know.

I do know not enough political action is being undertaken by our community. We need a two pronged appraoch – ONE – pressure government until they provide full funding from diagnosis through recovery for ABA programs through a supplier of each parents choice. And TWO a full scale assault on the piblic school boards to force them to provide medically required Lovaas ABA educational processes in the classroom, to be delivered by a member of the home team. These two issues are critical to the recovery of our children.

Perhaps FEAT could initiate a class action against the government. Also a class action against the school boards who are even more against ABA in the classroom and by their decisions not to supply ABA are permanently affecting our childrens chance of recovery every day they hold out.

Does FEAT have a group that we can all rally with to get these two issues going?

Graham
Thor's DAD

[Barbara Rodrigues]

Hi Everyone:

Just wanted to ask a few questions and please feel free to respond anonymously as I am asking about funding. It has come to my attention that while the government said that they put in 11 million dollars in 'new money' for autism treatment that they are then not offering any of the funds that were available prior to the 'new' 500.00 a month that is coming out.

Example say you were getting some funds privately from other sources that your child was eligible for ie: supported child care, youth care worker, behavioral support – say that came to XX dollars per month. So you figure with the influx of the new monies you would get your XX dollars a month PLUS the 500.00 per month. (This situation is not about me as of yet but someone I know) Instead you are told by your social worker and her boss that no there is no longer any money from the other support services and you are only entitled to the 500.00 per month. Is this happening in other areas or just again in the beautiful Okanagan?

Didn't the courts say the government was supposed to fund this treatment. Now they look as though they are not really putting more money into autism but just cancelling program funds that our kids were eligible for. Is a lawsuit by each and everyone of us the only answer until the Supreme Court of Canada hears the case?

Thoughts from anyone else?

Barbara
Jeremy's Mom

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