[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

[Super Dad]

If you want to send a more detailed letter to your MLA, I have written a sample by expanding the one from Jenn. You can leave out the last paragraph if you’re not keen on having a meeting, but everyone should send a letter to educate their MLA. It only takes a couple of minutes to paste it into an email and fire it off.

Your MLA’s email address can be found here:
http://www.leg.bc.ca/mla/3-1-1.htm

We may soon lose everything we have fought so hard for. Trust me – you don’t want to go back to where we were seven years ago.

Those who cannot learn from history are doomed to repeat it.

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Dear Hon. Lex Luthor,,

I am your constituent, and the parent of an autistic child. I am writing because I am extremely concerned about the announcement from the Ministry of Children and Family Development, on the cancellation of the Direct Funding option for autism treatment.

There was a time when autism funding went to treatment providers operated by the Ministry of Social Services. None of it went to the parents, who helplessly watched the money go to waste. It is hard to imagine anything less effective than having social workers provide healthcare, since they are trained in a completely different field. Despite all the government spending, none of the children received anything even remotely resembling effective treatment.

Parents fought long and hard, and eventually Premier Gordon Campbell listened. In 2003, the Premier brought in the Direct Funding program for autism treatment. Here is a copy of the original CIAT (Choices in Autism Treatment) proposal:

https://featbc.org/ciat.pdf

Once the parents had control of the money, the most highly-educated parents taught others to use the funding in the most efficient and effective way possible. As a result, children received science-based treatment from qualified professionals, who were held accountable by the parents. This funding model also saved the government millions of dollars in administrative cost, since the administrative work (such as invoicing) was done by the parents themselves.

During the past six years of direct funding, the non-elected senior management of the MCFD lobbied the government to let them rebuild their autism empire. Unfortunately, they have succeeded in convincing Minister Mary Polak to start taking control away from the parents again. The replacement of the Direct Funding model with the “Invoice Payment” model may be a small step, but it’s a step toward a repeat of the nightmare prior to 2003.

Parents are very sure Minister Mary Polak does not realize the financial and human consequences of her decision. We are also very sure Premier Gordon Campbell would never approve, if anyone had actually consulted him. The move backward from financial efficiency to bloated bureaucracy is completely against the Liberal sense of intelligent spending.

I am requesting a meeting with you in person during the coming week. I want to answer any question you may have and I am eager to hear your advice.

Sincerely yours,
Clark Kent

[Jenn Ralph]

from the Times Colonist:

Scrapped autism program was unfair: Polak

By Lindsay Kines, Times ColonistSeptember 23, 2009

B.C. Children's Minister Mary Polak backtracked yesterday on her reasons for scrapping an early intervention program for autistic children.

Polak said last week that she killed the early intensive behavioural intervention (EIBI) program, in part, because it performed little better than less expensive services.

"We recognize, too, that we have to look at the outcomes," she told a news conference then. "And when it comes to what was occurring with EIBI, we were not seeing any appreciable improvements in the outcomes for those kids."

Polak changed her story, however, after the ministry admitted that she was basing her comments on a four-year-old study. The research was done while EIBI was still in its infancy, and the ministry acknowledges that much has changed since then.

Faced with that, Polak now says the decision to scrap the EIBI program had nothing to do with its quality, and was solely an issue of fairness.

"Whether or not, in point of fact, there was a greater improvement or an appreciable difference between the programs was not the issue upon which we based the decision," she said.

The real reason, Polak said, was that the EIBI program cost $70,000 annually for each child under six and served only 70 children in seven communities. The other 800 or more autistic pre-school children in B.C. receive $20,000 a year.

"This is an issue of equity and it's an issue of access," she said yesterday.

The government argues that by scrapping the $5-million program, it can use the money to boost intervention services to all children from $20,000 a year to $22,000 as of April 1. It will also use part of the money to set up a $1-million outreach program to improve services in rural and remote areas.

The decision to kill the program affects 22 children in Victoria and eliminates 39 full-time, part-time and casual jobs at Queen Alexandra.

NDP children's critic Maurine Karagianis said Polak's reversal shows the ministry acted too quickly and failed to consult parents.

"I think their reasons for cancelling this program are crumbling under close inspection," she said. "And the fact that the government is now changing their tune — backing away from their original statement — says to me that … there is no basis for this."

Polak said the B.C. government has increased funding for autism from $4.1 million in 2001 to $46 million this year. lkines@tc.canwest.com

© Copyright (c) The Victoria Times Colonist

[Dione Costanzo]

NEWS RELEASE
Applied Behaviour Analysis Support Network

For immediate release: September 20, 2009:

Parents Oppose MCFD Announcement Regarding Elimination of Direct Funding

Surrey: Since the announcement of the cancellation of Direct Funding for autism services, members of the ABA Support Network have made it clear that they are opposed to such a move. On the government’s part, there is no financial gain to eliminating Direct Funding. On our part, the right to choose our own service providers is at risk.

Within the last decade, during a time of Invoice Funding, the government would only allow autism services from a select few government run agencies. Parents had to pay for Applied Behaviour Analysis (ABA) out of their own pocket to bring in quality ABA service providers that were not part of the government’s programs. After the Auton lawsuit in 2002, the Liberal government did finally put Direct Individualized Funding into place. This allowed parents to fund their children’s ABA programs, and build a strong, quality base of ABA service providers in BC.

The shift away from subsidizing government agencies has lead to improved access to quality ABA programs. In the future, different politicians or bureaucrats could shift back to limiting access to government agencies. This will be more difficult to do if Direct Funding is still in place.

For this reason, the ABA Support Network is adamantly opposed to eliminating the Direct Funding option for parents of children with autism. We hope that the current government will leave us with a safer option for our children regardless of who wins the next election.

Contact: Dione Costanzo
Phone: 604-535-1162

The ABA Support Network is a newly formed non-profit society that is based in Surrey, BC. Our mission is to improve access to quality Applied Behavioral Analysis (ABA) treatment and support in the home and in the community for children, youth and adults who need it. http://www.abasupportnetwork.com

[Barbara Rodrigues]

Hi:

Just a suggestion when you write a letter to the Minister of MCFD – I would also cc it to the Premier and your MLA – it only takes a few seconds more and I found the cc's to be helpful and be sure you read the above by Sabrina on dealing with Government and keeping a paper trail of letters sent and responses or nonresponses gotten.

Also I think if we are heading for the loss of direct funding then we need to be sure of accountability on the Government's part in paying our staff in a timely manner – that would be within 2 weeks of their dates of employment – ie: If my staff works Sept 1=15 I want them paid on the 30th of September not 2 months later! I think for most of us – our consultants/SLPs they can more afford to wait (not ideal but they usually are running a business and used to this) but to those of us for paying our 'therapists' many of whom are students or using this job to 'survive' – it would not be practical to expect them to wait 2 months for their paycheques. I think this point needs to be addressed and stressed as we will not be able to keep staff for therapist positions if they must wait months for their cheques. I think the MCFD needs to put in a more streamlined payment system if they expect to take away direct funding (where you can fax in your staffing hours on their set end of pay period ie: the 15th/30th so they are paid on the 30th/15th respectively) again unless they regionalize this – I can't see it working – which again is going to cost WAY more money than direct funding – I think they already have the Autism Funding Unit overworked as it is let alone when they add further demands – it's going to be a bloody nightmare.

As someone who walked a picket line for direct payment many years ago – this is a hard battle – but not one that can't be won but unfortunately not an easy one and one that is going to be hard to get sympathy from the public on. In my case it was different as the Government wanted to supply me with THEIR useless/untrained staff rather than allowing me to hire/keep my own and were actually willing to pay more funds for those unqualified workers than giving me direct funding. So the public could understand that and supported me. In this venue – it's a bit different so it's harder to try and explain the compications of this to the public but again not impossible. I think the main point is that it's going to cost the Government money in administration costs – a lot of money. But if this is something that is 'set in stone' then you need to demand that your staff are paid as you would have paid them – on time on the set dates. Otherwise – well how long would you stay with an employer who paid you 2 months behind??

But yes, very disconcerting these new developments.

Barbara Rodrigues

[Jenn Ralph]

Hi all,
Below is a link to find your MLA with contact information.

http://www.leg.bc.ca/mla/3-1-1.htm

If you want a sample letter – see the one we sent Mary Polak (MCFD) below. Change what you want to individualize if you like.
mary.polak.mla@leg.bc.ca
Gordon Campbell is premier@gov.bc.ca
Jenn

Dear Ms. Polak,

I am writing you today as a very concerned parent to recent announcements you made, specifically plans to take away the direct funding model of autism funding for children.

Ms. Polak, I don't know how much you know about autism and the history of all of the struggles in this province to get our children treatment and to ensure they have rights to get that treatment. Indeed, that struggle is ongoing as our children are still being vastly underserved. The direct funding model that Gordon Campbell brought in in 2003 enabled children to at least get some quality, scientific based autism treatment, applied behaviour analysis (ABA), which was never offered in any arguable way by the government service providers, which were the only option at the time. It also saved the government millions of dollars in administration fees that the parents were now doing themselves.

The announcement to move back to "invoice payment" as the only option is a step backward in this direction. This will cost the government much more money, but more importantly will unnecessarily put all of our children at risk.

Ms. Polak – my husband and I are requesting a meeting with you next week in person. We want to help you understand the gravity of this situation and are eager to hear your opinions and ideas on this subject.

Jennifer and Doug Ralph
Jenn.ralph@shaw.ca
604 812-4341 cell
604 541-8242 home

[Louise Taylor]

If anyone out there is in Vicki Huntington's riding (she sits as an Independent in the legislature), please contact me at:

abarocks@gmail.com

Thanks,

Louise

[Louise Taylor]

Re: MCFD decision to cancel Direct Funding payment option:

We all need to be very concerned about this as it is clearly the 1st step in dismantling indivualized funding for our children! I urge all parents and others in this community, to voice your concerns by contacting the Media, your local MLA and the Minister. Her is her contact info:

Mary Polak
Minister of Children and Family Development
Parliament Buildings
Victoria BC V8V 1X4
Tel: (250) 953-4877
Fax: (250) 387-9103

Email: mary.polak.mla@leg.bc.ca

OR her Constituaency Office at:

Unit 102- 20611 Fraser Highway
Langley, BC V3A 4G4
Tel: (604) 514-8206
Fax: (604) 0195

[Brad & Roxanne Black]

Alright then…The government is trying to screw our children and we have to act quickly and respond to the press release. I know that the ABA Support Network put out a press release however I do think a letter should be sent to the Premiers office as well as MCFD. My concerns are as follows;

The $1 Million given to SFU, where's the accountability! They have had over 2 years and over $2 Million to do something, where's the $ and what have they done thus far.
The govt has spent $1.275 Million in a long term national study into effective interventions. Alright again, is the science not clear enough to these people, have we not gone down this path before..where's the accountability that the gov't with limited resources are spending their $ wisely.
Douglas College, more $ spent there on a substandard program.
The dismantalling of the Direct Funding, making parents more accountable, what so we can have the idiots in Victoria do a better job! Give me a break, a parent advised me today that their therapist on invoice payment option just received their pay cheque for work done in July. Really efficient aren't they over there! So in essence what Polack is saying is that the gov't does not trust parents, this is the beginning of the end folks….we'd all better get our fingers typing and phone calls made.
Oh and the $1 Million for outreach, does anyone know exactly who will be getting this contract and what exactly is happening there? Yet another waste of money.

Roxanne Black
—– Original Message

[Dione Costanzo]

NEWS RELEASE
ABA Support Network

For immediate release: September 17, 2009:

In response to MCFD’s Announcement Regarding Changes to Autism Programs

At first glance it may seem to make fiscal sense to get rid of an “elite” program which costs $5 million per year and offers limited services to very few families. However, the Minister’s announcement of how that money is going to be reallocated does not address the real need of children with autism which is improved access to quality autism treatment.

For families running a high cost, home-based ABA (Applied Behavioral Analysis) program this $2,000 is a drop in the bucket and has a limited effect when there are not enough quality service providers to fulfill their needs.

Children with autism and their families would be much better served if the Government focused on building capacity of quality ABA service in the province. $5 million could create a University Chair in ABA with a focus on autism. This would make a lasting difference in the lives of all autistic children, not just in BC but across the country. This would also address the Government’s concern of expanding quality services to rural areas as there would be a centralized training facility for well qualified ABA service providers.

Contact: Dione Costanzo
ABA Support Network
Phone: 604-535-1162

The ABA Support Network is a newly formed non-profit society that is based in Surrey, BC. Our mission is to improve access to quality Applied Behavioral Analysis (ABA) treatment and support in the home and in the community for children and adults who need it.

[Andrea Finch]

Link to B.C. Government announcement

Further to Todd's earlier post, here is a link to the News Release – http://www2.news.gov.bc.ca/news_releases_2009-2013/2009CFD0003-000348.htm – if this doesn't work, it should be on the government's website.

The gist is: the funding for those who run home-based ABA programmes remains in place. The government-contracted EIBI programmes, which apparently serve 70 individuals in 8 B.C. communities at a cost of $5 million per year, will be terminated as of January 2010.

I think one of the key pieces for those of us running home-based ABA programmes is the move away from Direct Funding to Invoice Payment – here is the excerpt:

· Effective October, 2009, the ministry will begin moving families from Direct Funding to Invoice Payment in the Autism Funding Programs in order to improve accountability and increase efficiency.

o Direct Funding: Families manage their child’s funds and pay service providers.

o Invoice Payment: Families choose the service but the ministry manages the child’s funds and pays service providers when it receives an invoice.

Given that the government wants to start moving in this direction next month (ie. starting in a couple of weeks), I would really appreciate either public posts to this board, or messages sent to me privately at andreafinch@shaw.ca, from any FEAT families who can offer perspective or commentary on whether this has ever arisen in the past, and if so, what if anything was discussed.

Thanks all,
Andrea

[Author]

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