[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

[Bev Sharpe]

Season’s Greetings to all FEATBC families.

I am so proud to share that on Christmas morning my beautiful daughter
set the breakfast table, made a pot of tea, helped clean and put away the dishes.

She then participated fully in turn-taking with gift opening, identifying her gifts and made an appropriate statement about each gift. In the evening, she sang Christmas songs and again, fully participated in dinner preparation and clean up!

Applied Behaviour Analysis is the treatment program, designed and implemented by our Behaviour Consultant – thank you Shelley Davis and therapists of past and present! – that have taught my daughter the skills which allow her to participate fully in such celebrations.

ABA is the only bonafide, scientifically-based, data-backed treatment for Autism. It works.

For 2014 I encourage all parents and families to advocate for ABA to be included in Medicare. Political activism with focus, clarity and persistence is the only thing that will change Medicare to include ABA treatment for Autism.

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.

Happy New Year.

[Bev Sharpe]

9 years ago today, November 19, 2004 the Auton decision was rendered by the Supreme Court of Canada.

This judgment upheld the findings of fact from the BC Supreme Court that ABA Treatment was medically-necessary. The judgement failed our children by not ordering the provinces to pay for this treatment.
The serious flaw in the Supreme Court of Canada judgement was that this court, the highest court in the land, did not wanted to force the provinces how to spend their health care dollars.

What Auton did was put a spotlight on the inhumane exclusion of our autistic children from Medicare.

What can you do?

Continue your child’s ABA treatment program – it is the single treatment with the science , data and efficacy behind it – it works.

Keep informed. Sign up for the free newsletter from Association for Science in Autism Treatment at:
http://www.asatonline.org/signuphttp://www.asatonline.org/signup

Join Medicare for Autism Now! Their website: medicareforautismnow.org
Your autistic child is a Canadian citizen who is worthy of their core treatment need for ABA and worthy of being included in Medicare.

Get active with Civil Rights Now! People living with a disability in British Columbia do not have the legal rights and protections they believe that they have. Anyone and everyone, as a result of an accident, an illness or merely by getting older can become vulnerable. And that’s why everyone needs to get involved in this campaign. Their website is: civilrightsnow.ca

Read and understand the Auton and Hewko decisions. These decisions outline critical facts which you can use to advocate for your children’s treatment both at home and in school.

Thank you to Dr. Sabrina Freeman for founding Families for Early Autism Treatment and for your tireless work on both the Auton and Hewko cases.
Thank you to each and every family who courageously carries on a treatment program for their child.

[Renee Pupetz]

Is it true that a psychologist is not covered by funding under 6?I am so heart broken .My child is obsessing and terrified and I really need to get her help.I just found out she may not be covered.Any feedback about any way to get around this would be appreciated.

[Super Dad]

Does anyone know who created the following petition in 2004?

Please let me know if you do.

——————————-

PETITION: TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED

We, the undersigned citizens of Canada, draw the attention of the House to the following:

Whereas children suffering from an Autism Spectrum Disorder (ASD) are among the weakest and most vulnerable sector of Canadian society;
and whereas, in Canada the rate of children being diagnosed with ASD is high and increasing at an alarming rate (currently approximately 1 child in 195);

and whereas, until the cause and cure of autism are found, children suffering from autism can benefit from the provision of Intensive Behavioural Intervention (IBI) therapy treatment based on the principles of Applied Behaviour Analysis (ABA);

and whereas, for a variety of reasons including lack of assigned resources, unconscionable waiting lists, and delegation to Ministries with little or no expertise, the provision of IBI/ABA therapy treatment to children with autism is woefully inadequate;

Therefore, your petitioners call upon Parliament to

1) amend the Canada Health Act and corresponding Regulations to include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism; and

2) contribute to the creation of academic chairs at a university in each province to teach IBI/ABA treatment at the undergraduate and doctoral level so that Canadians professionals will no longer be forced to leave the country to receive academic training in this field and so that Canada will
be able to develop the capacity to provide every Canadian with autism with the best IBI/ABA treatment available.

[Tina]

Need advice

Hello all,

I wonder what I can do in such situation: my MCFD social worker has confirmed some afterschool service for my 13 year old child in July this year(I requested 5 days)and now she told me the team has decided to give 2 days (they changed what they have confirmed). I work full time and now I am stuck with expensive private after school care cost. Please help me if you have some ways to advocate for this matter. I have already contacted my MLA but due to my moving to another place (for having access to school bus service and other reasons), I will be in a new neighbourhood that will need to contact my new MLA and wonder how much he/she is willing to do. Please help. Any idea is appreciated. Thank you very much in advance.

tnkaccount@gmail.com

[Super Dad]

North Shore ASBC Lecture Series

The North Shore ASBC Support Group proudly presents:
*** A Presentation for PARENTS Only ***

Becoming an Effective Advocate
Basic Skills for Dealing with Government Agencies

by
Jean Lewis
Parent and Advocate

at
7:00pm, Tue Oct 15

in
Welsh Hall West
downstairs in the
West Vancouver Memorial Library

GUEST SPEAKER:

Jean Lewis is one of most prominent autism advocates in Canada. She was previously a founding director of FEAT BC, and a key figure in the Auton and Hewko cases. Jean is currently continuing the advocacy in multiple roles, including directorship of Medicare for Autism Now.

TOPIC:

This is Jean’s advice for all families struggling against government bureaucrats: "As the parent of a special needs child, you must represent your child's interests at school, in the community, everywhere. You cannot leave this job to others! Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills."

Jean will present an overview of these skills. Her approach is based on the principle that there should be no compromise in the fight for a child’s human rights, and we should accept nothing less than full support of medically necessary treatment.

DIRECTIONS:

The West Vancouver Memorial Library is at 1950 Marine Drive:
http://maps.google.ca/maps?q=1950+Marine+Dr,+West+Vancouver,+BC+V7V+1J8

The library is easily accessible via Highway #1 Upper Levels, taking either the 15th Street or 20th St. exits.

Coffee/Tea and snacks provided. Donations are greatly appreciated (but not required).

Please RSVP to <asbcnorthshore@yahoo.ca>.

Carol and Dragos
(Co-facilitators for ASBC North Shore Group)

[Dione Costanzo]

MEDIA RELEASE

ABA Support Network
Surrey, BC
http://www.abasupportnetwork.com
Louise Witt, Media Contact
Phone: 604-538-1370
abarocks@gmail.com

Sept 21 Conference Provides Hope for Children with Autism in BC’s Education System

Parents want evidence-based learning programs and supports established in all B.C. school districts according to the Hewko precedent

For Immediate Release September 18 2013, Surrey, BC: The Applied Behavioral Analysis (ABA) Support Network is hosting a one-day conference in Surrey on September 21, 2013 for more than 100 parents, educators and other professionals to raise awareness about the current state of ABA in B.C. schools and develop a plan to further the implementation of ABA programs in our districts.

The event – ABA in Schools Workshop – will be held at the Surrey SFU campus from 8:30 a.m. to 5:30 p.m. this Saturday and will feature four presentations and a networking lunch.

ABA is a structured teaching method in which functional skills are broken down and taught one step at a time. That means that children with autism can learn and flourish in all areas including language and communication, play and leisure, self help, life skills and academics.

Families of children with autism often put ABA teams together to work with their children at home. Dione Costanzo, director of the ABA Support Network says that the results are worth the emotional and financial stress.

However, once a child with autism enters school in a district that does not have supports for ABA programs, the results achieved at home can be severely compromised, says Costanzo. “All the successes achieved can grind to a halt and often the child regresses.”

ABA is widely considered to be the most effective, evidence-based learning approach for children with autism yet Surrey is the only school district in B.C. that has an established system for hiring ABA-trained teaching aides.

Costanzo says that the ABA Support Network and parents are on a mission to change this.

“Children have a right to an education and ABA is the best method to achieve this for children with autism,” says Costanzo. “Implementing these programs, and training and hiring more ABA teaching assistants is the right thing to do, and it's the law.”

According to the landmark Supreme Court of BC ruling – Hewko v. B.C., 2006 BCSC 1638 – what is required for children with autism to access an education is adherence to their established ABA programs, and the availability of teaching aides that are trained to carry it out. In most B.C. school districts, ABA programs are not accommodated nor do teaching aides have the proper training to support these programs.

Costanzo says that implementing the ABA programs is a cost-neutral exercise, it just requires the political will.

“Getting an appropriate education system for children with autism in place with ABA-trained teaching aides requires political will and leadership,” she says. “It will not increase costs but it will be utilizing existing funds more effectively, and will save tax dollars in the longer term.”

The ABA Support Network is a parent-led, non-profit organization whose mission is to improve access to quality ABA support and services for individuals with autism.

For information about ABA in Schools Workshop contact Dione Costanzo at dione@abasupportnetwork.com or 604-817-1526. Anyone interested in learning more about autism and ABA can visit the ABA Support Network website at http://www.abasupportnetwork.com

Link to this release is here – http://abasupportnetwork.com/docs/ABA%20in%20Schools%20Media%20Release%20Sept%2018.pdf

[Jodie Wickens]

Please come out tonight to show your support for Tri-City Parents. We will be waiting for a response from the school Board Trustees in regards to our June delegation. The presentation can be watched here:
http://youtu.be/xMOdlJGVYXY

Meeting will be held at:
550 Poirier Street Coquitlam, BC V3J 6A7
Everyone is meeting at 7:15pm

See you there!
Thanks for your support!
Don't forget to sign our petition!
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

[Andrew Kavchak]

Hi Folks,

This article appeared in a few papers today…need a national conversation about autism…Speech from the Throne…another journalist is finally getting it.

Autistic children and their families need more support

BY L. IAN MACDONALD,
SPECIAL TO THE GAZETTE AUGUST 27, 2013

A few months ago, Zara handed me an old children’s story book, of which only the covers remained.

“Read me a story, Daddy,” she said.

“What story, sweetie?”

“The one in my imagination.”

Which is not the only five-syllable word in her vocabulary. At the cottage two years ago, when she had just turned 2, I was putting her in her stroller for our morning walk down to the bridge.

“We’re going for our morning constitutional,” she declared. Her mother explained that back home, she would take her out for their “afternoon constitutional.” From afternoon to morning, Zara could tell one from the other, but she remembered her constitutional.

This summer, at 4, when she caught a toad on the beach at the lake, she and her Mummy made a home for it — turf, sand and water in a Frisbee, all in an inflatable wading pool. When Toadie disappeared from view, Zara said: “He’s camouflaging in the habitat.”

She also has a photographic memory.

Sitting out in her grandparents’ backyard last summer, I pointed out a bird that flew by. “Look at that little yellow bird,” I said.

“Daddy,” she said, “that’s a Goldfinch.”

Her grandmother had been reading an illustrated book of birds with her, and she knew all the ones in the backyard.

It also turns out that she has perfect pitch, which is one of the reasons why she can’t stand people singing off key. At her third birthday party last year, she covered her ears and began to scream when guests started to sing Happy Birthday.

From the age of 2½, she began exhibiting many other sensory issues. She became extremely sensitive to sound and light, as well as touch. Once, when I was helping her into her car seat, my cheek brushed up against hers. “Oh, Daddy,” she exclaimed, “you hurt me with your beard, but I love you anyway.”

This is part of a diagnosis last fall that Zara has a moderate case of Asperger’s syndrome, which is an autism spectrum disorder at the high performance end of the scale.

Zara has the vocabulary of a child perhaps twice her age.

“Did you go swimming today?” I asked her on the phone this summer.

Instead of a simple yes or no, I got the weather report.

“No, Daddy,” she said, “it was rainy, and foggy and cold.”

She has behavioural issues familiar to parents of Aspies. She has obsessive interests: for six months, she believed she was a bunny; currently, she will tell you she’s a teenager. She is less interested in playing with her peers than with older children and adults; until recently, she would tell kids her own age to simply “go away.” At her preschool, she would not join circles, and preferred to do her own thing. She can be quite obstinate about getting her own way, and sometimes has meltdowns when she doesn’t. She can say things that are very funny, but socially inappropriate.

One Canadian child in 88 has ASD, and Zara is one of the fortunate ones at the high end of the scale. All these children have special needs that are not covered by their medicare cards.

Getting the kind of developmental therapy these kids need is expensive. Zara’s mother recently enrolled her for daily half-day sessions at a privately run exceptional learning centre near their home in the Greater Toronto Area. It’s very expensive — like sending your kid to an Ivy League college, in pre-K. Yet at least, between us, we can afford it.

But what about the parents who can’t afford therapy for children with special needs? And what about their kids, who could consequently fall between the cracks?

The obvious answer is that we can help these families now, and help their children become productive, and potentially brilliant, members of society. Or we can pay for the costs of looking after them later.

Margaret Clarke of the University of Calgary, a leading authority on autism, and her U of C colleagues David Nicholas and Herb Emery, have written in a Policy magazine article that the “net present value at birth of the incremental costs of supporting the ASD population over its neurotypical peers in Canada can be estimated at $3.4 billion for each annual birth cohort.”

They also note the employment rate for persons with ASD “ranges in studies from 10 to 55 per cent.”

Canada’s autistic children and their families need more of the kind of support offered in the 2013 federal budget — such as the $222 million earmarked for training, including for persons with disabilities, and other low-cost initiatives such as the $15-million Accessibility Fund for PWDs.

And while health and education are in provincial jurisdiction, we need to have a national conversation about autism. The coming Speech from the Throne would be a good starting point.

L. Ian MacDonald is editor of Policy magazine (policymagazine.ca)

[Andrew Kavchak]

Hi Folks,

Autism has been getting some ink in the press lately. Earlier this week there was news about a mother in Ontario getting an anonymous letter suggesting that her autistic son should be killed because he was not normal and it was bothering the letter-writer (a neighbour). And I thought we had defeated naziism in 1945! Unfortunately, not so.

Second, the Children's Hospital of Eastern Ontario (CHEO) got some bad news this week as they lost a human rights case (see below). One thing to note is that while the Canada Health Act (Medicare) is supposed to apply to medical services provided by doctors and hospitals, I can't tell you how many time bureaucrats told me that autism treatment should not be covered by Medicare as it is not a treatment done by doctors or hospitals, even though this is clearly not the case in the nation's capital. However, it is my understanding that CHEO performs the service on contract to another ministry (I believe they call themselves the Ministry of Community Services or something like that) and not to the Ministry of Health. The whole thing seems like a shell game.

From Ottawa Citizen Website August 23, 2013.

CHEO accused of discriminating against autistic boy

Ontario Human Rights Tribunal to hear complaint about child’s dismissal from intervention program

BY DON BUTLER, OTTAWA CITIZENAUGUST 22, 2013

OTTAWA — The Ontario Human Rights Tribunal will hear a complaint that the Children’s Hospital of Eastern Ontario discriminated against an autistic boy when it discharged him from an intervention program.

In an interim decision dated Aug. 16, the tribunal agreed to add CHEO as a respondent to the complaint, which originally named only Ontario’s Ministry of Children and Youth Services.

After reviewing evidence that officials at CHEO made the decision to discharge the boy — referred to only as M.B. — the tribunal added CHEO to the case.

“There is a potential that CHEO might be responsible, or share responsibility, for any alleged (Human Rights Code) violations in this case,” tribunal vice-chair Jo-Anne Pickel concluded.

According to facts outlined in the Aug. 16 tribunal decision, M.B. is a child who has been diagnosed with Autism Spectrum Disorder and Global Development Disability (GDD).

As a result of his diagnosis, he was eligible for intensive behavioural intervention therapy at CHEO.

The therapy, funded by the provincial ministry, provides individualized programs for children towards the severe end of the autism spectrum.
CHEO’s website describes the program as a comprehensive approach used to teach a broad range of skills, including communication, socialization, self-help, pre-academic and play. The goal is to help young children with autism “catch up developmentally with their age peers,” the website says.

The human rights complaint was filed by M.B.’s “next friend,” D.H. (In law, the term “next friend” refers to someone who acts on behalf of another person, often a child, who lacks the legal capacity to act on his or her own behalf.)
It alleges that the boy was discharged from the program “as a result of his secondary diagnosis of GDD, which affected his ability to meet certain learning goals.”

That amounts to discrimination because of disability, a violation of the Ontario Human Rights Code, the complaint alleges. The Citizen contacted D.H., the complainant, but he declined to comment.

GDD — known as Global Development Delay before age five — is defined as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behaviour.” Common signs include limited reasoning or conceptual abilities, poor social skills and judgment, communication difficulties and aggressive behaviour.

The complaint against CHEO and the ministry alleges that the manner in which M.B.’s eligibility was assessed had a “disparate impact” on him because of his secondary diagnosis.
After mediation on May 17 of this year failed to resolve the matter, the tribunal agreed to hear the complaint next Feb. 12-14.
CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability.

“Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.”

The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The complainant applied to add CHEO as a respondent after receiving a letter from the ministry explaining that it was the responsibility of regional service providers — CHEO, in this case — to determine eligibility for intensive behavioural intervention programs.

In a response to the tribunal opposing the application, CHEO reviewed the history of M.B.’s treatment and its discontinuation and declared that there was no basis for a finding that the hospital violated the Human Rights Code.

CHEO said M.B. “was treated in the same manner as all other children entering the program,” the tribunal’s interim decision says. The hospital also argued that the decision to terminate services to M.B. was based on “a clinical decision founded on appropriate clinical testing and clinical judgment.”

According to CHEO’s website, not all autistic children benefit from the intervention program. Some improve, some show limited or no gains and some even get worse.

To continue in therapy, the website says, children need to show “benefit especially in language, general cognitive ability and measures of adaptive behaviour.”

Each child’s progress is reviewed every six months and a clinical decision is made whether the child should continue in the program or be referred to other services.

CHEO’s website says the “clinical decision” regarding continuation or discharge is made by a panel of psychologists and is subsequently reviewed with the child’s parents by the supervising psychologist or clinical supervisor and the senior therapist of the child’s team.

In her decision adding CHEO as a respondent to the complaint, Pickel said the hospital’s arguments that it did not violate the Code by discharging M.B. “are more appropriately made in the hearing on the merits.

“I find that it would be fair in the circumstances to add CHEO as a respondent,” she wrote. “Fairness requires that the applicant be permitted to add the entity that the ministry states was responsible for (M.B.’s) eligibility to remain in the program.”

[Author]

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