[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

[Joanna Ng]

Dear FEAT readers,
Another year's already here and way into its 3rd month. Hope everyone is doing well.

I am truly excited that Jean's workshop is finally around the corner. I just could not wait till April to hear her speak again.

I once thought that I am all alone in this journey [autism] with my child – struggling and groping in the dark. But later on, I realize there are many parents who truly work hard for the benefit of all these children who cannot fend for themselves; and also always trying to support parents/families who are searching for truth. Definitely, Medicare for Autism NOW supercedes all.

Like David shared, there is a light in the dark.

[Mike & Jean]

Attention all FEATsters…

Jean Lewis and David Marley, founding directors of Medicare for Autism Now! will be guests on Vancouver's Community Living radio show – CFRA 102.7 FM. The interview airs tomorrow – Friday, March 11th at 2:00 pm. They will be discussing their upcoming, April 30th advocacy workshop – "Getting it Done!" You can listen on the radio or on-line.
For more info. about the workshop contact mfanow@gmail.com or call 604-290-5737

[Super Dad]

The following is from a parent who had to fight a funding denial by uninformed government people. I believe she is talking about classroom support funding from the Ministry of Education.

"Our son is six with ASD. He was diagnosed in July 2007 using the CARS method. We received funding from the government (for education) last year but not this year. We fought the result and found out that the education committee had erred in that they did not realize that CARS was valid until September 1, 2008 and the new rules requiring ADI-R should have grandfathered those that used CARS. My son also has received funding from the MCFD for many years. Please let members know that if they are in the same situation they can appeal and receive the funding."

[Super Dad]

Going in circles trying to get what your child needs?

If so – circle the date – Saturday, April 30th

The Medicare for Autism Now! Society presents:

“Getting it Done!”

…an “on-the-job * hands-on * this is how you do it” Advocacy Workshop

Topics will include:

* Effective advocates – what they do…or not
* Autism treatment funding – securing its future
* Solving school “issues” using the Hewko case

Be prepared to learn and participate (you’ve never had this much fun in the school principal’s office…) Details to follow – circle the date – don’t miss out, limited spaces available.

Saturday, April 30th _ 8:30 am to 3:30 pm
Burnaby Heritage Village Carousel

$119.00 per person/$189.00 per couple – lunch included

*All proceeds will go to Medicare for Autism Now’s advocacy initiatives

Questions or pre-register: Email: mfa@gmail.com or call 604-290-5737

[Cathy Fitzhugh]

Hi FEATers,

I'm located in Vancouver. My daughter has been covered for over 6 years. We've had a lot of trouble this year switching over to the new invoicing system: they decided to withhold 1/4 of our yearly funding because the switch-over paperwork wasn't sent in on time.

In fact, the initial paperwork was never sent to me, and when we owed our provider $, the ministry assured them that there was a "one-time" situation wherein we could pay the provider and be re-imbursed. Our provider passed this on to me, and I stupidly paid it in good faith. But now, that payment was made for sessions that occurred during the months that the gov't is refusing to fund us, and they are refusing to refund it. The woman that made the mistake admits to saying it, yet they won't pay us. It's infuriating, and I'm at my wits end.

I've had payments delayed before when I sent in paperwork late, but never in 6 years of doing this did I dream that they would actually remove the funding.

This makes me very angry. Very.

If anyone has any ideas of who I could talk to or how I could fight this, I'd really appreciate the help.

scissorhappy@shaw.ca

Most Sincerely,
{Cathy}

[Nancy Walton]

YOU can help bring quality ABA to all of BC. Please fill out the survey mentioned below:

MCFD is circulating a survey to assist in the development of a new Outreach Program for Young Children with ASD. Directors of featbc and the ABA Support Network have discussed ideas for this program, based on input from parents we have assisted throughout the province. We feel that there are two very important strategies to put in place in BC and we would like parents and professionals to focus on these two goals when filling out the survey:

1) To give scholarships to 5 ABA therapists in BC to complete a Masters degree in ABA with a focus in autism at a university where there is clinical supervision, with the proviso that these therapists return to work in the Interior BC, Northern BC or on Vancouver Island for 3 years. If all students attended the same program (such as the CABAS program at Teachers College Columbia University in New York City), then they could support each other upon returning home, and provide training to further increase capacity.

2) To establish a Masters and Doctorate ABA training program that includes clinical supervision at a university in BC.

If you would like to see what CABAS program is, you can go to http://www.cabas.com. CABAS is a comprehensive ABA training program based on the principles of VERBAL BEHAVIOUR.

We strongly recommend you complete the survey (see details below) and suggest the above recommendations,

Two surveys are also available NOW through the Autism Community
Training website http://www.actcommunity.net/
Or Direct Link:
Survey for Parents and Caregivers:
http://fluidsurveys.com/surveys/act-autism-community-training/popycasd-survey/
Survey for Autism Service Providers
http://fluidsurveys.com/surveys/act-autism-community-training/popycasd-service-providers

[Dione Costanzo]

"Autism Therapists say payments 5 months late"

CBC News November 23, 2010

http://www.cbc.ca/canada/british-columbia/story/2010/11/23/bc-autism-payments-delayed.html

Please go to this story, recommend it and comment. More comments and recommendations will push it to the top of the news.

THANKS and PASS IT ON

Dione

[Dione Costanzo]

Surrey, November 22, 2010

FOR IMMEDIATE RELEASE:

MCFD Payment Policies put Autistic Children in Jeopardy

Over 100 autism treatment service providers have complained they have not received payment for services within 30 days of invoicing the Autism Funding Unit (AFU) within the Ministry of Children and Family Development (MCFD). There is already a shortage of these service providers and those currently practicing are being forced to rethink their career choices. Families now risk losing current therapists and cannot attract new ones willing to put up with such financial uncertainty.

In September 2009 the Hon. Minister Mary Polak eliminated a Direct Funding option where parents could pay their service providers through a trust account. At that time, parents were assured that late payment problems would be dealt with. In the year that followed, these problems, in fact, worsened.

When contacted on October 4th, 2010 about the poorly managed AFU the Hon. Minister Mary Polak responded by saying "I know we've cleared the backlog and are continuing to work to solve other issues as they are raised by families and providers". However, featbc has confirmation that the problems are not resolved and service providers continue to not get paid within 30 days.

There are over 6,000 children in this province with Autism Spectrum Disorder who require therapy. Accessed through MCFD, this treatment will directly affect a child’s future. The difference between treatment and no treatment can also mean the difference between lifelong independence versus institutionalization.

Since autism treatment is not covered under Medicare, the amount of therapy a child receives depends directly on what families can afford to pay beyond the inadequate funding provided through MCFD. Despite its mandate to protect these children, current MCFD policies are actually interfering with access to treatment.

All attempts to communicate this to MCFD have fallen on deaf ears.

Last week British Columbians became painfully aware of what can happen to BC’s most vulnerable children when the Ministry for Child and Family Development drops the ball. MCFD indifference is allowing more of BC’s vulnerable children to fall through the cracks. Meanwhile, families trying to cope with the stress of autism are living nightmares every day as they struggle to keep therapists for their children.

-30-

(For further information contact Louise Witt at (604) 538-1370 or spokesperson@featbc.org)

[Bev Sharpe]

Hello and attention everyone.

Civil Rights Now!, formerly Paladin Advocacy League, is a not-for-profit, 100% volunteer organization whose goals should be of interest to anyone with a child who has autism.
CRN advocates for public policy changes which will provide all Canadians with disabilities equal access to the equality provisions of our Charter.

VOTERS WITH DISABILITIES WANT CIVIL RIGHTS NOW!

Langley, BC, November 12,2010

The Langley Pos-Abilities Society is hosting a meeting for the public on Saturday, November 20, 1:30pm to 3:30pm, at the Langley Seniors Resource Centre, 20605-51B Avenue, to discuss the Civil Rights Now! campaign.

Zosia Ettenberg, the President of the Langley Pos-Abilities Society and the 2008 recipient of the Courage to Come Back Award, will be moderating the discussion with Civil Rights Now! Executive Director Paul Caune and his Board. “ I was horrified to find out how far behind BC’s legislation is compared to other Western countries,” said Ettenberg.

Civil Rights Now! is a not for profit, non-partisan, all volunteer society that thinks the way the government of BC delivers services to voters with disabilities strips them of their freedom and dignity.

Civil Rights Now! is organizing a campaign to persuade the provincial Liberals and NDP and other parties to make a commitment that if they win the next election they will pass legislation to truly empower voters with disabilities.

The Langley Pos-Abilities Society is hosting a meeting for the public on Saturday, November 20, 1:30pm to 3:30pm, at the Langley Seniors Resource Centre, 20605-51B Avenue to discuss the Civil Rights Now! campaign.

Civil Rights Now! website http://civilrightsnow.ca/

[Dione Costanzo]

Hi everyone,

The ABA Support Network is pleased to announce the launch of 9 Neighborhood Network groups!

Small groups of ABA parents wanting to connect and network locally have been established in 9 areas in BC. Please contact the facilitator of a group to find out more and join the meetings. Each group will be having monthly meetings and time and date will be determined by what works for each group.

The meeting agenda of each group will vary depending on that areas needs and wants. If it is getting together for coffee or organizing a group to advocate for ABA services in school this is where you can participate and get the support you need.

Please see our website for a list of the areas, facilitators and contact information.

http://www.abasupportnetwork.com/neighborhoodnetworks.php

[Author]

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