[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

[Andrew Kavchak]

Hi Folks,
Please check out the article about the Auton case and autism in Canada by John Ivison in today's National Post (November 10, 2004)!
Cheers!
Andrew

[Andrew Kavchak]

Hi Folks,
Well, things are on a roll in the Canadian Senate! Since the latest session of Parliament started, Senator Jim Munson has made two statements calling for a National Autism Strategy and Senator Donald Oliver similarly called attention to the challenge of autism. Please see below the statement that Senator Vivienne Poy made in the Senate on Wednesday, October 27, 2004. I believe the Senator is the Governor General's (Her Excellency Adrienne Clarkson) sister. Her email address is:
poyv@sen.parl.gc.ca
Let's keep up the submissions on autism! The Senator makes reference to a Senate committee. I believe the committee will be travelling in the coming months to hear submissions from Canadians. Our community shoudl consider making submissions and appearing as witnesses to describe our experiences (or lack thereof) with the health system in Canada.
Cheers!
Andrew Kavchak (Ottawa)

Autism Awareness Month

Hon. Vivienne Poy: Honourable senators, last week Senator Oliver brought it to our attention that October is Autism Awareness Month and referred to hopeful developments in science that are making treatment for autism possible. Those treatments, though, however effective, must be accessible and affordable. From letters I have received recently, this is not the case with autism or, for that matter, with other developmental disorders suffered by many children. The parents of these children are pleading with parliamentarians for our help.

Like Senator Munson, I am concerned that these treatments, particularly the intensive therapy that is required before the age of six, are not available to enough individuals. Those seeking help are forced to wade through a patchwork system, often being placed on long waiting lists, or going into debt, to pay for costly treatments themselves.

Children who suffer from autism and other developmental disabilities cannot wait for our help. If they are not treated at a very young age, society will pay for their support throughout their lives. As both Senators Oliver and Munson noted, the number of individuals who are diagnosed with autism is rising exponentially. We need a national autism strategy now.

Honourable senators, I have received many letters from constituents seeking help. One of them was from the public servant, the one Senator Munson mentioned in his statement, who spent his lunch hour marching on the Hill, calling for action on autism. He was there because he could see no other way to have an impact.

Some parents I know are fundraising for themselves; others are forming their own support networks, such as Giant Steps Toronto, which is part of a worldwide group of educational centres for children that aims to integrate autistic children into society.

I also know a woman whose own struggles to cope with her child's array of developmental disorders led her to found an organization called Spirit of Life. This organization reaches out to parents and provides networking and resources to those who feel isolated and alone.

These are brave and courageous parents doing their best in the face of very difficult circumstances.

It is important that the Standing Senate Committee on Social Affairs, Science and Technology, which is currently studying mental health and mental illness, look at the issues of autism and other developmental disorders and their treatment and that it make recommendations for action so that parents and their children do not have to cope alone.

[Isaac]

Autism treatment in the news …

The NY Times piece is at the link below:

https://featbc.org/downloads/NYTimes_11_08_04.pdf

[Andrew Kavchak]

Hi Folks!
Senator Jim Munson made a second statement on autism in the Senate on October 26, 2004. Senator Munson may be reached through his assistant Alexandre Asselin at:
ASSELA@SEN.PARL.GC.CA

Thank you to all who wrote to him!
Andrew Kavchak (Ottawa)

From the Senate Debates:

Need for National Autism Program

Hon. Jim Munson: Honourable senators, two weeks ago, in my reply to the Speech from the Throne, I emphasized a need for a national program to treat autism, not the patchwork of programs we see in some parts of the country.

Since I spoke, I have received dozens of e-mails from coast to coast, messages that are both heartwarming and heartbreaking. This is a country where it is alleged we have a universal medicare program. One of the notes from a parent of an autistic child reads as follows:

I am one of those parents who, for years, paid for my son's early intervention program out of my own pocket….I sold my house to pay for the program, my elderly parents gave up their retirement nest egg and I sacrificed the university education fund of my other son to pay for the program.

Eventually, the bank refused to loan me any more for my son's medically necessary treatment and today I am still heavily in debt as a result. However, my son made significant progress in this therapy program and it was well worth every penny.

Senators, I hope that when we echo the words of Canadians in this chamber that they are not empty words and someone is listening. My government, all provincial governments must do more. This is a crisis and if you read the statistics, it is only going to get worse.

Listen to another mother.

I am the mother of an autistic 3 year old child…

If my daughter had cancer she would be in hospital immediately and they would have doctors and specialists provided for her immediately. For us, we would have to wait at least 10 months to get her seen by a doctor and with this disability 10 months is too long.

Senators we are talking about Canada's children, children who without professional and financial help will never have a chance to participate in their communities.

…There must be a national will to help tens of thousands of Canadians.

In closing, one parent said, "I just pray that things will change for the better soon." For things to get better soon, provincial governments, working with the federal government, must fund more, not less, treatment for autistic children.

(1420)

The recommended treatment is intensive behavioural intervention. Provincial health care plans should be amended to include this medically necessary treatment for children with autism. Funding for this treatment should be available to all individuals with a diagnosis of autism, regardless of age and severity of affliction.

It has been said that these treatments are costly. Well, there should be no price tag on the caring of a child in this blessed and generous country called Canada.

[Nancy Walton]

I have an update on the hard copy petitions being sent in to MP's throughout Canada.

30 to Russ Hieber, Cons, White Rock BC
40 to Tony Martin, NDP social crit, North ON
60 to Chuck Strahl, Cons, Chilliwack BC
50 to Barry Devolin, ON
60 to Stephen Owen, Lib, Vancouver
125 to Ramond Chan, Richmond (from 2 sources)
60 to Chuck Cadman, ind, Surrey BC

Total is 425 plus what ever signatures Andrew has been able to get to Scott Reid, while protesting in Ottawa.

Keep up the good work. Lets see if we can get 1000!!!! As Andrew said, as soon as you get 25 signatures, hand them in to your MP, then you can give more to your MP as they come it. Just keep me up to date on what you have sent in.

Nancy Walton

[Nancy Walton]

The November ASBC South Fraser meeting is cancelled due to it falling on Rememberance Day. The next meeting is December 9th.

Nancy Walton

[Isaac]

As many of you know, Andrew Kavchak — Ottawa lobbyist for medically necessary autism treatment — took his important message to the recent First Ministers’ health care summit in Ottawa. Important media coverage was achieved.

The message Andrew delivered is attached …

–> https://featbc.org/downloads/health_summit_protest.JPG

Isaac (Miki’s Dad)

[Justin Himmelright]

My understanding of the new funding arrangement is that the direct invoicing method is an option. You still have the option of receiving the funding directly and having your line therapists invoice you. I would strongly urge that folks out there reject the "direct invoicing method" choice. This option will allow the government bureaucrats to review and reject invoices. It is just another step to allow them to enforce their policies of ignoring what your child's doctor or consultant says and directly interfere with the medical treatment of your child as they seem to think they are qualified to do.

My suggestion is that you reject this option and continue to use direct funding. Write a letter or email to Cameron Keller, Director, Provincial Autism Initiatives Branch (Cameron.Keller@gems5.gov.bc.ca}), suggesting that whatever budget he has set aside for bureaucrats to process invoices is wasted money that should be directed to parents so they can spend it on treating their children.

An option that seems to have been pulled off the table is the "lump sum" option for kids over 6. The best you can hope for now is quarterly payments that are totally inadequate to run a proper ABA program. If you are like me, the lump sum option was the only option since it actually allowed us to run a proper program for a couple of months at least. Their options amount to band aids for compound fractures.

The changes in policy were brought about with no discussions or consultation with parents and families who will be impacted. Either the Victoria bureaucrats think they know what is best for us or they don't give a damn about what we really need and are looking for ways to manage their own interests. Either way, it is not good for us.

[Ursula Lee]

I was somewhat alarmed after a conversation with my social worker and I was wondering if anyone knows any more than I do. My soc worker informed me that the govt has implemented a new policy as of Oct 1st that has an alternative payment method called Invoice payment. The service provider invoices the govt directly and I am not involved. Hence no $1667 a month (I won't need it!). Although I would be responsible for any expenses over $1667. I was told that since my agreement predates this, that I would have the choice of Invoice payment or direct funding, but when this agreement expires next year, I will go to invoice payment. Does this mean that line therapists will have to invoice the govt? Is there a way of preventing the govt from enforcing this measure? I will be seeing my soc worker in the next month and hopefully will have it clarified, but as of now, she is not clear herself what the detials are.
Thanks for any clarification on the matter.
Ursula

[Judy Wang]

Male therapist needed:
My son is 5 years old, diagnosed with autism. We have been doing ABA therapy for over 2 years. My son is very fun to be with, and loving. He needs a male therapy to take him to out door activities or some gymnastics. There would be basic training of ABA, greatly encourage people whom have special need experiences, and have patience and able to get along with children. This job is most appropriate for people whom are easy to play with children. Anyone interested please email resume to da12345@excite.com

[Author]

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