[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

[Dione Costanzo]

The ABA Support Network is planning a one day workshop to take place this fall in the lower mainland. This workshop will be open to all parents and professionals and the goal will be to educate attendees on the current state of ABA in BC schools and how to move forward with implementing ABA programs, district by district.

This is NOT a registration page – we need to know how many people would attend this workshop so that we can confirm a location.

Please fill out the following questionnaire which will assist us in planning this event.

https://www.surveymonkey.com/s/ABAinSchoolsWorkshop

[Dione Costanzo]

TONIGHT, June 25 at 7pm
at 550 Poirier Street in Coquitlam

Led by Jodie Wickens, the Tri-Cities chapter of the ABA Support Network has organized a delegation to present to the school board at this meeting a proposal that ABA trained aides are provided at school for children with autism whose parents are running a home based ABA program overseen by a qualified consultant.

This presentation will be brief, and we are asking AS MANY PEOPLE AS POSSIBLE TO ATTEND to show their support for Jodie. The more people that show up , the bigger an impact we will have.

Please pay it forward – your district could be next!

Sign the petition here – http://www.change.org/en-CA/petitions/sd-43-provide-aba-trained-at-least-1000-bcba-supervised-hours-sea-s-to-students-that-have-asd-and-are-already-participating-in-a-home-aba-program

and PLEASE come tonight tonight to show your support. Parents, professionals, friends, neighbors, family ALL WELCOME.

Thank you.

[Jodie Wickens]

Tri-City parents are presenting to their school board tomorrow to ask that ABA trained SEA's be required for our children. PLEASE help support us by signing our petition! The more names the better!

https://www.change.org/petitions/sd-43-provide-aba-trained-at-least-1000-bcba-supervised-hours-sea-s-to-students-that-have-asd-and-are-already-participating-in-a-home-aba-program

[Bev Sharpe]

July 9, 2004. 9 years ago today, I sat in the Supreme Court of Canada court room, along with several other Auton litigants.

The Auton case is the case where a small group of parents brought an action against the government for failing to provide medically-necessary Applied Behaviour Analysis treatment to their autistic children.

Both at the Supreme Court of BC and the Appeals Court of BC, it was found that the failure to provide this treatment constituted a denial of the children’s rights under the Equality provision, Section 15 of the Charter of Rights and Freedoms.

This decision was appealed by all of the provincial and the federal governments, all the way to the Supreme Court of Canada.

On that hot, sunny day, 9 yrs. ago, I chose to skip the lunch break, and wait outside the court room, to ensure all of us getting our seats back at the front of the court room for the afternoon session. It was then, that the Sherriff informed me that it was the first time he had ever seen the Supreme Court of Canada re-arranged, to allow for a record number of intervenors against our autistic children.

Yes folks, the injustice against providing treatment to our children was pervasive across every province and territory.

In a stunning and shocking decision, the Supreme Court of Canada did not uphold the lower court decisions that ABA treatment was medically-necessary and must be provided. Rather, the Supreme Court of Canada ruled that the “core health needs” of our children had been provided. They meant that if our children break a leg, or get strep throat, they get treatment, but not for their Autism. The judiciary said that though they recognized ABA as “gold-standard” treatment, that they, the judiciary could not order the provinces how to spend their health care dollars.

The Auton litigation put the spotlight on the necessity of ABA for our children, essentially shaming every province to provide some funding of this treatment. This funding is discretionary. Any funding provided today can be taken away with the stroke of a pen. It is vitally important that we get ABA treatment included in Medicare.

What can parents do now?
Hire a bonafide Behaviour Consultant, and start your ABA treatment program for your child. ABA treatment is an autistic child's core health need.

Political activism with focus, clarity and persistence is the only thing that will change Medicare to include ABA treatment for Autism.

Parents educate yourselves. Read the Auton and Hewko decisions. Watch the film, “Medicare’s Orphans” at medicareforautismnow.org

Check out Civil Rights Now! at civilrightsnow.ca

Thank you Dr. Sabrina Freeman for founding FEATBC and spearheading the Auton litigation. Thank you to all the parents, families, and concerned citizens that advocate for ABA medically- necessary treatment for autism because we need Medicare for Autism now.

[Barbara Rodrigues]

Thanks Andrew for the post and info – I just shot off Senator Munson a quick email to thank him for bringing that up in Parliment. Thank you for keeping us updated and informed – I appreciate your effort and your time.

Barbara Rodrigues

[Andrew Kavchak]

Hi Folks,

From the Senate Debates of May 9, 2013…

Autism

Support for Families

Hon. Jim Munson: Honourable senators, last week an Ottawa couple made a heart-wrenching decision after 19 years of intense stress and worry for their autistic son's safety. Amanda Telford and Alex Chiasson decided the time had come to give up the fight. Philippe is non-verbal. He wanders, regularly slipping out of the house only to be found hours later and kilometres from home. He has diabetes, and the inside of his home is fraught with danger. Imagine what it must be like for his parents.

They made a desperate decision. With the sleepless nights and the diminishing of their own health, the full weight fell on their shoulders. Last Wednesday, this couple dropped their son off, perhaps forever, at a developmental services office right here in Ottawa, and the family's private torments become public.

Honourable senators, this is happening all across this country. There are tens of thousands of families struggling to find and pay for care and accommodation for their adult children with autism spectrum and other disorders. The Ottawa Citizen reported that 12,000 families in Ontario alone are currently waiting for some kind of supported living accommodation for their developmental disorders.

Granted, the government has put together a national surveillance program, which is in the early stages, and there is a research chair at York University. However, it is not enough. We need more to be done.

Here in the Senate, as we all know, six years ago, in 2007, we had a report, Pay Now or Pay Later: Autism Families in Crisis. Every autistic family in this country wants a national autism spectrum disorder strategy. We have one for diabetes, for cancer, for mental health and for heart disease. Where is our strategy for ASD? The federal government has yet to invest — and it needs to invest — in our best hope.

We have this option. The report was called Pay Now or Pay Later: Autism Families in Crisis, as I said. The "pay later" time has already come.

The latest news on Philippe is that the Ministry of Health in Ontario has joined social services to devise a solution that meets his distinct needs, but there must be a national solution. Philippe's mother sees the model here as one to be used across the country. In her words, "It's not rocket science…. It should have been available right from the get-go." That really says it all.

Our hearts and thoughts are with Amanda Telford and her husband.

[Andrew Kavchak]

Hi Folks,

And if there ever was any doubt about the federal government's commitment to healthcare for the disabled…well, let the doubt persist…

From:
http://winnipeg.ctvnews.ca/feds-appeal-judgment-ordering-ottawa-to-pay-for-disabled-native-youth-treatment-1.1272984

Feds appeal judgment ordering Ottawa to pay for disabled native youth treatment

By Bruce Cheadle, The Canadian Press
Published Wednesday, May 8, 2013 2:33PM CST
Last Updated Wednesday, May 8, 2013 2:35PM CST

OTTAWA — The federal government is asking the Supreme Court of Canada to overturn a court ruling that would force it to pay the cost of caring for a severely disabled aboriginal teenager living at home.

The precedent-setting case involves an 18-year-old on the Pictou Landing reserve in Nova Scotia and his principal caregiver, his mother — who herself suffered a debilitating stroke in 2010.

Last month the Federal Court ruled that Ottawa was wrong to cover only a fraction of the cost of care for Jeremy Meawasige, who suffers from cerebral palsy, autism, spinal curvature and hydrocephalus, a debilitating accumulation of spinal fluid in the brain.

The court found that the government is obliged to uphold "Jordan's Principle" — a 2005 agreement that First Nations children should get the public assistance they need, regardless of jurisdictional fights between levels of government over who should pay.

The ruling was hailed at the time as a step toward ensuring aboriginal children get equal access to essential government services.

A brief notice of appeal filed by the federal Justice Department says the court erred in its interpretation and application of Jordan's Principle .

Lawyer Paul Champ, who represents Meawasige's mother, Maurina Beadle, and the Pictou Landing band, called the appeal "shameful."

"I understand that the Pictou Landing case is a big precedent, but is it really one they should fight?" Champ said in an email.

"I think it looks terrible for the government to be seen opposing Jordan's Principle and equality for disabled First Nations children."

A departmental spokeswoman for Aboriginal Affairs said the government continues to make the health and safety of First Nations a priority.

"The government of Canada will work with the Pictou Landing First Nation for the reimbursement of home-care costs incurred related to Mr. Meawasige's need, however following careful consideration we have decided to appeal the decision," Genevieve Guibert said in an email.

"Canada is committed to working with the community and the province to ensure appropriate supports are in place for the family moving forward."

Justice Leonard Mandamin found that Ottawa was wrong to cover only $2,200 a month toward Meawasige's care, which costs the Pictou Landing band council about $8,200 a month.

"The only other option for Jeremy would be institutionalization and separation from his mother and his community," said the judgment.
"Jordan's Principle is not to be narrowly interpreted."

Jordan's Principle is named after Jordan River Anderson, a Manitoban who died in hospital in 2005 as governments argued over who should pay for home care services.

The House of Commons unanimously voted in favour of adopting the principle. The Federal Court noted that government departments publicly declared they would respect Jordan's Principle in their policies.

Jean Crowder, the NDP critic for aboriginal affairs, called the government appeal "very disappointing" and said her understanding is that the ruling would impact a relatively small number of severely disabled First Nations youth.
"They should let the ruling stand," Crowder said in an interview.

"The amount of money they're going to spend on the appeal would pay for Jeremy's care many times over."

[Bev Sharpe]

Jean Lewis and David Marley, directors of Medicare for Autism Now! and
Civil Rights Now! will be on the Simi Sara Show – CKNW 980AM today
from 1:00 to 1:30 discussing Civil Rights Now proposed legislation.
Have a listen and call in.

[Bev Sharpe]

REMINDER TO ALL WHO USE THIS FEATBC CHAT BOARD.

This is a 100% free, volunteer-run service.

Before you post, please review and understand the rules.

Advertising compensation, hourly rates of pay, is against the rules. This web site is not here to promote competition between families for therapists.

Please contact me personally if you want to discuss this.
bsharpe7@hotmail.com

Beverley Sharpe
Director, FEATBC

[Bev Sharpe]

TODAY TUNE IN TO 1070 AM on your radio.
5pm-5:30pm The Terry Moore Show.

Jean Lewis and David Marley will be discussing the sad and horrible situation of the Telford case.
The parents who left their 19 yr old severely Autistic /Tourette's Syndrome son on the doorstep of a Social Services Office in Ontario.

Jean and David will discuss this case and the much larger issues around it.

[Author]

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