[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

[Amber Armstrong]

I hope I am putting his in the right spot..

I was in a car accident in September, I wasn't severely injured but I did some damage to my neck and shoulder and have to attend physio twice a week. Right around the time of the accident my son decided to stop sleeping through the night. I was advised by another parent to request emergency respite. I was approved for 8 weeks fairly easily (although it took a long time to get any money). The 8 weeks just ended and I am still in the same position, not getting regular sleep, still in pain and subsequently still in physio (UGH). This time around it was much more difficult getting anything out of CLBC. I had to get a Drs note (my receipts for physio weren't enough apparently), they wanted a detailed report of my injuries and recovery time etc. They weren't helpful or supportive at all and basically said they didn't care if I didn't sleep and I wouldn't be getting anything if it weren't for the physical injury. As long as my son isn't sleeping through the night I am going to NEED a break. I was told the waitlist for respite for me would be 1-5 years. Has anyone been successful in getting respite. I heard from another parent that harassing them is the only way to get anywhere.

Anyone have any advice? Oh and they cut my measily respite the second time around- even with the Drs note. And I wasn't even getting $200/month. I'm wondering if it will be easier when children's services go back to MCFD.

[Jemma Lee]

Todd,

Thank you for getting us the answers from Cyndi. To help Cyndi get elected, please give her a brief history lesson on Linda Reid, who has gone to court against us, and is the reason why autism treatment is still managed by social workers.

Reid does NOT believe in "families right to decide what is best for their children." She takes what she has called "far from adequate" (pre-election) and shoves it down our throats (post-election).

For the details, please see the essay titled "Broken Promises":

http://www.featbc.org/penticton/brokenpromises.pdf

I appreciate all the fine people who want to advocate for our children, but I prefer those who are not government puppets.

Jemma

[Todd Dea]

Jemma,

As requested :

1. When it is my turn to fight the school board to get my own ABA-trained therapist into the classroom, how hard will Cyndi fight on my behave?

Yes, of course I will and I will do so with the same passion and conviction that I would for any family. I have never discriminated against a family based on their behavioral therapy choice. Of interest to this group, there are a number of Lovaas ABA families here on the North Shore that I have supported to the best of my abilities in the past. If you would like me to help you advocate for your home based person, I can and I will.

2. One of Cyndi's Facebook friends is Linda Reid. Is this the same Linda Reid named repeatedly in the FEAT-BC essay titled "Broken Promises"? If so, does Cyndi share her friend's views about autism treatment?

Yes, Linda Reid is a friend of mine and has helped me when setting up an independent ABA school and preschool. Linda believes in families and families right to decide what is best for their children. I share that belief. I also appreciate that Linda has taken the time to visit programs in Alberta that support children with autism and other special needs and continues to speak to many parents from across the lower mainland about their needs.

To be clear, I have nothing against ABA and unfortunately I have been misquoted many times. I use ABA/VB and I have seen much success with one of my children. I have advocated in my school district for the last four years for an ABA program and continue to do so. I have also been encouraging the school district to hire a board certified behavioral analyst so that they actually have someone qualified to implement programming. Recently, I submitted a proposal to create an ABA program in the North Vancouver School District as a program of choice. I have the support of many of the partner groups and I am hoping that this time we will be successful.

Sincerely

Cyndi Gerlach

[Dione Costanzo]

Hi Everyone,

If anyone running for School Trustee in Surrey had publicly declared that they did not believe in ABA – yes I would be very concerned about that and it would definitely affect my vote.

Further, I think I would challenge them on that at a public meeting. We are not talking about other methods of therapy here – we need to know who is supporting and advancing ABA treatment and support in our schools.

The current School Board in Surrey has listened to parents and professionals regarding how to implement ABA into the classroom and how to support these students so that they can succeed, and so that the classroom works effectively for all students.

Surrey College offers an ABA Support Worker program, which, in conjunction with a specified number of hours spent being trained in home based ABA programs, is preparing professionals to support students in the classroom.

Having these trained professional therapists in classrooms with these kids is benefitting students, teachers, parents, and the administration. The only problem is there are not enough of them.

We also need to get consultants in there. There are many children who would benefit from the implementation of individualized behaviour programs but they are unable to receive this in a home-based program.

The Surrey Education Team, which comprises the majority of the current school board and who are up for re-election, has publicly committed to moving forward and expanding ABA programs in schools. They have a track record of working with parents and administration, and their plan is to continue with these programs and others (Fast Forward) that are proving successful in supporting students with autism and other special needs.

That is what gets my vote.

On November 15, RE-ELECT the Surrey Education Team:

Dantzer, Alex
Glass, Pam
Jefferson, Wayne
Masi, Reni
Wilson, Shawn

[Jemma Lee]

Todd,

Instead of attacking another parent's advice, you can help Cyndi by asking her some questions and posting her answers. Families who use ABA want to know, for example:

1. When it is my turn to fight the school board to get my own ABA-trained therapist into the classroom, how hard will Cyndi fight on my behave?

2. One of Cyndi's Facebook friends is Linda Reid. Is this the same Linda Reid named repeatedly in the FEAT-BC essay titled "Broken Promises"? If so, does Cyndi share her friend's views about autism treatment?

Jemma

[Dave Collyer]

Dunno what study Todd had in mind.

Lovaas (1987) reported: "…47% achieved normal intellectual and educational functioning… 40% were mildly retarded and assigned to special eduction classes for the language delayed… 10% were profoundly retarded and assigned to classes for the autistic/retarded"."

In '93 Lovaas ((McEachin, Smith and Lovaas, 1993) "wonders" in the discussion section of this paper if:

"…perhaps such children {those who make limited or no progress on the instruments/scales used} require new and different interventions…" .

Which leads one to wonder about what such Interventions might be that are new and different? It appears that in this paper the idea that new and emergent interventions might hold merit for some children on the spectrum is an area for further examination… the door to other non-ABA options for research does not seem to be closed at least in the minds of these preeminent ABA researchers-authors.

I think these examples might serve to support what Todd has written below. There are more… LMK what tyou are looking for and I would be happy to find it in my pile of papers.

[Joanne Siu]

Todd,

Could you post the link to the research study/studies that demonstrated the result you posted "Even in a perfect clinical environment the Lovaas studies showed the ABA had little or no effect (improvement wise) on 15% of the children studied"? I would love to look at the research. Thank you.

Joanne

[Todd Dea]

Tony,

While I sincerely appreciate your effort to bring me up to speed on the two candidates who I have yet to meet, I have very real concerns with your chosen words regarding Ms. Gerlach.

Our family uses ABA, and I'm assuming yours does as well, so I didn't think it would be breaking news to you to learn that ABA doesn't work for every child. Even in a perfect clinical environment the Lovaas studies showed the ABA had little or no effect (improvement wise) on 15% of the children studied. If "Lovaas ABA is the only way" then what do you, Tony, advocate for those other 15% ?? Should we just ignore them and let them fall by the wayside ??

In talking with Cyndi I believe that she believes that her child(ren) were in this 15% group. I don't think Cyndi has anything negative to say about ABA in general but I certainly think she has feelings toward anyone who would question or worse, insult, her motives or desire in continuing to search for a program that will help her child(ren).

All of that aside, I have serious serious reservations about any Autism Parent (you) that would insinuate that other Autism Parents should think twice about voting for someone who has been such a strong advocate, and helped many many or our children, get better (or any for that matter) support in our school system, JUST because she doesn't share your unquestioning support of a particular behavioral program.

It is this is the type of attitude or opinion that continues to divide our community, and one of the very real reasons that the government continues to get away with ignoring us. United we can accomplish much. Divided we will accomplish little.

Any parent who has lived what I live on a daily basis and with that knowledge or understanding in mind, chooses to stand for an elected office to advocate for all of our kids has my unequivocal support and they should have yours and every other ASD parent in their community as well.

I will be taking your advise on November 15th and casting my ballot based a single issue. Given that it was your words that asked us to join you, I'm assuming you will as well.

Respectfully

Todd

[Super Dad]

Todd,

About Mike Lewis: You can help him by directing all your Facebook friends in West Vancouver to his page.

About Tamara Leger: She is one of the best things that has ever happened to the autism community in our province. I would endorse her for just about anything.

About Cyndi Gerlach: She is a nice person, but in the past she has openly (even proudly) opposed ABA treatment. Parents who use ABA must vote very carefully.

Tony

[Todd Dea]

As a follow up to Roxanne's post I was very excited to see some Autism Parents running for positions on the North Shore.

In West Vancouver Mike Lewis is running for Council and Tamara Leger is running for School Trustee.

In the District of North Vancouver, Cyndi Gerlach is running for School Trustee.

I have yet to have the pleasure of meeting Mike or Tamara, but in the short time that I have known her I can certainly vouch for the amazing job that Cyndi has done in advocating for our children (and all children for that matter) within the school system especially, in many areas of the lower mainland.

I hope everyone gets out and votes !!

[Author]

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