[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

[Barbara Rodrigues]

You know there was a parent who challenged this is the courts in Alberta as they are saying the same thing over there : once a child reaches the age of 7 then it's the 'education' 'schools' problem. Well, the parent won the case as the judge stated it was not the 'educations' mandate.
The judge awarded the child full coverage of somewhere in the 40,000.00 in spite of the fact they were school age and the award was to go until her pediatrician said otherwise or until she was 18 years of age.

Plus there is also the point that there are going to be those children with autism who will not have the foundation skills yet to be 'warehoused' or the more appropriate word 'integrated' into the system and will require intensive one-to-one intervention past the magic age of 6 years old.

So I totally agree with you anonymous – the government is still ignoring our kids 'medical treatment' and getting away with it each passing day.

I wait with great anticipation to see what the Supreme Court of Canada decides. Then I guess we all have to decide how we should hold them accountable for what they have done to our children – to their futures. Because I am sure there has a been a great cost to all of our kids and our families and not just financially.

Barbara
Jeremy's Mom

[Deleted User]

Over the past few months many of our children have been cut-off the limited funding they recieved from the ministry of children and families. Many families used these funds to provide our children with the only scientifically proven treatment for autism ABA therapy.
Children under 6 will be allowed 20,000 dollars per year funding, which is approximatley 1/3 the cost of actual program costs. Children over 6 are reduced to to 6,000 dollars per year for what the ministry considers "after school hours".
The Ministry and Government of B.C. appears to be missing the fact that ABA therapy is a great deal more than education for our children, it is deemed medically necessary treatment for our children by the courts. Medical treatment knows no age, it does not stop at the age of 6, nor does it stop during the summer months.
The mandate of medical treatment is to do what it takes to maximize potential&optimize performance. In contrast to educational goals, it is outcome based rather than progress based. As with any medical treatment interrupting it, or reducing the dose comes with consequences. For our children the consequences are vast & immeasurable and sure to impact their quality of life.
Who will be accountable for this? The message to the Province of BC needs to be loud and clear. We as parents who have to give up valuable hours of ABA treatment due to a lack of funding see the Government responsible for negligence in the medical care of our chidren.

[Deleted User]

In the last few weeks the government has released an interesting series of RPF’s (Requests for Proposal) related to adult housing. Supported housing has always been a tremendous barrier along the road to independence for our children. It appears that the government has realized the dire need for a spectrum of housing. Information is available on the BC Housing Website http://www.bchousing.org/ILBC/RFP.asp.

For further information please contact:

Jeff Laskey
Community Education &
Support Services Worker
Autism Society of British Columbia
301 – 3701 East Hastings Street
Burnaby, British Columbia
V5C 2H6

tel: 604.434.0880
fax: 604.434.0801
toll free 1.888.437.0880

[Michelle Weis]

For some reason the whole link did not got through but it did post in its entirety on the government board itself.

Both articles were from the Toronto Star dated April 28, 2003. http://www.thestar.com

Michelle

[Michelle Weis]

Lack of autism funding called discriminatory:

http://www.thestar.com/NASApp/cs/ContentServer?pagename=thestar/Layout/Article_Type1&call_pageid=971358637177&c=Article&cid=1051125573946

Autism treatment case heads to court:

http://www.thestar.com/NASApp/cs/ContentServer?pagename=thestar/Layout/Article_Type1&call_pageid=971358637177&c=Article&cid=1051125569786

[Deleted User]

Autism Ruling Sets Precedent For Funding, Says NDP

[From the Canadian News Wire.]
http://www.newswire.ca/releases/April2003/13/c0631.html

PRESS RELEASE:

Autism ruling sets precedent for funding, says NDP

TORONTO, April 13 /CNW/ – The Conservative government should heed the
signal from the Ontario Superior Court and allow medically necessary treatment
for children with autism to continue beyond the age of six, following a
precedent-setting ruling by Justice Arthur Gans, says NDP Health Critic
Shelley Martel. Martel, along with Niagara Centre MPP Peter Kormos, has been campaigning for the past year to have autism treatment, Intensive Behavioural Intervention (IBI), covered by OHIP and continued for as long as necessary under the auspices of the Ministry of Health. Today the two issued a call to Community, Family and Children's Services Minister Brenda Elliott to place a moratorium on cutting any child off once he or she turns six and to fully fund all families in need.
They called on Premier Ernie Eves to end the need for a current court challenge by parents. "Just fund this necessary and beneficial treatment for autistic children," Kormos said. "Then financially drained parents wouldn't be forced into court to get what, we believe, they're entitled to," said Martel. "We have close to 100 families at the Ontario Human Rights Commission right now one on one demanding an end to the discrimination that is denying their children medically necessary treatment for autism," Martel said. "This is clearly a health issue and parents shouldn't have to mortgage their homes to pay for treatment."

-30-

For further information: Sunday contact: Shelley Martel, (416) 407-6296; Peter Kormos, (905) 980-1667; Monday: Sheila White, (416) 325-2503

[Deleted User]

http://www.canoe.ca/Columnists/mandel.html

Court stops province from cutting off publicly funded treatment for autism treatment
Andrew’s last hope

By MICHELE MANDEL — Toronto Sun

Andrew Lowrey now has a chance at a bright future — and a decision in his case has just opened the door for many other autistic children just like him.

In a stunning judgment, Ontario Superior Court Justice Arthur Gans has stopped the provincial government from cutting off the publicly funded treatment Andrew badly needs just because he has reached his sixth birthday. The injunction requires the ministry of community, family and children's services to continue to fund the child's Intensive Behavioural Intervention (IBI) treatment until a decision has been made in a larger court case against the government — and that could be a year away.

A father's joy practically rippled across the phone line.

"I'm the happiest man in the world," Andrew's dad, David, said yesterday from the family's home outside Orillia. "We're very excited."

Because without this decision, the Lowreys were about to lose their farm.

Andrew was a year old when his grandmother sensed something was wrong. "This child is autistic," she told them. The Lowreys didn't want to believe her. Not then.

But soon the signs were all there: The headbanging, the violent tantrums, the repetitive actions, the failure to interact, his tendency to bolt. A psychologist in Ottawa told them he was beyond help, that he would eventually have to be institutionalized. "We cried all the way home from Ottawa," his dad recalls. "We didn't believe her."

Soon they had done enough research on the Internet to conclude Andrew's grandmother was probably right. But it wasn't until he was almost four that he was finally diagnosed as autistic. A new pediatrician had moved to Orillia from Toronto's Hospital for Sick Children. Her specialty was autism — and after examining Andrew, she had no doubt.

"He had the social skills of a one-year-old," Lowrey recalls, "and he was untestable for IQ."

Once he was diagnosed, he was eligible for ministry funding of IBI, also known as ABA or Applied Behavioural Analysis — the intensive one-on-one therapy that has done wonders with autistic children. After one year, the results with Andrew have been astounding. "We saw an amazing change," his father says. "If you met him today, you wouldn't know there was anything wrong with him."

One psychologist called the change "dramatic and remarkable." His IBI therapist believes the little boy will even be able to attend university if he chooses.

Yet last December, just as he was at a crucial point in his therapy, the government pulled the plug. The ministry stops all funding of IBI at the age of six. Andrew had "aged out."

It's a draconian policy that is being challenged by 28 families across Ontario in a lawsuit that begins April 23. "Children don't magically get cured at their sixth birthday," argues Tammy Starr who, with an eight-year-old autistic daughter, is one of the plaintiffs in the suit. "It's shutting off access to education and to gaining life skills in the community for my daughter. You'd never think of doing that to my other kids, but for some reason, it's okay to do it to her. It's cutting off her lifeline. It's cruel."

When therapy is prematurely withdrawn, children usually relapse and lose whatever gains they've made. The Lowreys were frantic. Andrew had come so far and had begun a phase in his seven-day-a-week treatment that was aimed at integrating him into the "regular" school system. They appealed to Minister Brenda Elliott — with no success. They tried to join the larger lawsuit, but received no reply.

In the meantime, they were paying $4,000 a month for IBI out of their own pocket, maxing out their line of credit and running deeper and deeper into debt. "I've borrowed everything to get this far, but even if we were going to lose our house, we weren't going to rob Andrew of his future."

Their last option before putting their farm up for sale was going to the courts.

The government's lawyers argued that continuing to pay for Andrew's therapy would open the floodgates to thousands of other autistic children in Ontario now beyond their sixth birthday. They argued it would increase the list — estimated at more than 900 children — of those still waiting to begin IBI.

Thankfully, the judge disagreed. "The 'window of opportunity' to develop and learn will have closed on Andrew if his treatment is not continued for the next year or so, never to be opened again. Furthermore, the sale of the family farm and home, assuming it can be done in a timely fashion, and the resulting personal dislocation is not something that can be compensated in damages if the plaintiffs prove successful in the final analysis."

It's a reprieve for Andrew. For Starr, it's "great" news on the eve of their launching a similar lawsuit.

"It's abominable what the government has done to families," Andrew's dad says. "This is a chink in their armour."

And a ray of hope for so many other autistic kids.

[Deleted User]

http://www.canoe.ca/Columnists/mandel.html

Court stops province from cutting off publicly funded treatment for autism treatment
Andrew’s last hope

By MICHELE MANDEL — Toronto Sun

Andrew Lowrey now has a chance at a bright future — and a decision in his case has just opened the door for many other autistic children just like him.

In a stunning judgment, Ontario Superior Court Justice Arthur Gans has stopped the provincial government from cutting off the publicly funded treatment Andrew badly needs just because he has reached his sixth birthday. The injunction requires the ministry of community, family and children's services to continue to fund the child's Intensive Behavioural Intervention (IBI) treatment until a decision has been made in a larger court case against the government — and that could be a year away.

A father's joy practically rippled across the phone line.

"I'm the happiest man in the world," Andrew's dad, David, said yesterday from the family's home outside Orillia. "We're very excited."

Because without this decision, the Lowreys were about to lose their farm.

Andrew was a year old when his grandmother sensed something was wrong. "This child is autistic," she told them. The Lowreys didn't want to believe her. Not then.

But soon the signs were all there: The headbanging, the violent tantrums, the repetitive actions, the failure to interact, his tendency to bolt. A psychologist in Ottawa told them he was beyond help, that he would eventually have to be institutionalized. "We cried all the way home from Ottawa," his dad recalls. "We didn't believe her."

Soon they had done enough research on the Internet to conclude Andrew's grandmother was probably right. But it wasn't until he was almost four that he was finally diagnosed as autistic. A new pediatrician had moved to Orillia from Toronto's Hospital for Sick Children. Her specialty was autism — and after examining Andrew, she had no doubt.

"He had the social skills of a one-year-old," Lowrey recalls, "and he was untestable for IQ."

Once he was diagnosed, he was eligible for ministry funding of IBI, also known as ABA or Applied Behavioural Analysis — the intensive one-on-one therapy that has done wonders with autistic children. After one year, the results with Andrew have been astounding. "We saw an amazing change," his father says. "If you met him today, you wouldn't know there was anything wrong with him."

One psychologist called the change "dramatic and remarkable." His IBI therapist believes the little boy will even be able to attend university if he chooses.

Yet last December, just as he was at a crucial point in his therapy, the government pulled the plug. The ministry stops all funding of IBI at the age of six. Andrew had "aged out."

It's a draconian policy that is being challenged by 28 families across Ontario in a lawsuit that begins April 23. "Children don't magically get cured at their sixth birthday," argues Tammy Starr who, with an eight-year-old autistic daughter, is one of the plaintiffs in the suit. "It's shutting off access to education and to gaining life skills in the community for my daughter. You'd never think of doing that to my other kids, but for some reason, it's okay to do it to her. It's cutting off her lifeline. It's cruel."

When therapy is prematurely withdrawn, children usually relapse and lose whatever gains they've made. The Lowreys were frantic. Andrew had come so far and had begun a phase in his seven-day-a-week treatment that was aimed at integrating him into the "regular" school system. They appealed to Minister Brenda Elliott — with no success. They tried to join the larger lawsuit, but received no reply.

In the meantime, they were paying $4,000 a month for IBI out of their own pocket, maxing out their line of credit and running deeper and deeper into debt. "I've borrowed everything to get this far, but even if we were going to lose our house, we weren't going to rob Andrew of his future."

Their last option before putting their farm up for sale was going to the courts.

The government's lawyers argued that continuing to pay for Andrew's therapy would open the floodgates to thousands of other autistic children in Ontario now beyond their sixth birthday. They argued it would increase the list — estimated at more than 900 children — of those still waiting to begin IBI.

Thankfully, the judge disagreed. "The 'window of opportunity' to develop and learn will have closed on Andrew if his treatment is not continued for the next year or so, never to be opened again. Furthermore, the sale of the family farm and home, assuming it can be done in a timely fashion, and the resulting personal dislocation is not something that can be compensated in damages if the plaintiffs prove successful in the final analysis."

It's a reprieve for Andrew. For Starr, it's "great" news on the eve of their launching a similar lawsuit.

"It's abominable what the government has done to families," Andrew's dad says. "This is a chink in their armour."

And a ray of hope for so many other autistic kids.

[Deleted User]

From: Darla Steffen
Subject: ONTARIO HUMAN RIGHTS
—————————————————

I just received a response from the Ministry of Community Family and =
Children's Services regarding discrimination against my autistic son, =
specifically in regards to IBI treatment, and through the Ontario Human =
Rights Commission. The MCFCS denied discrimination under the Human =
Rights codes section 1, 10 and 47 which state "Every person has a right =
to equal treatment, with respect to services without discrimination =
because of handicap". Section 10 of the code states "because of =
handicap…a condition of mental retardation or impairment, a learning =
disability, or a dysfunction in one or more of the processes involved in =
understanding or using symbols or spoken language." Section 47 of the =
code states "This Act binds the Crown and every agency of the Crown." I =
need help responding to the Ministries refusal to fund my son's IBI =
treatment, mostly because they are even denying IBI or ABA is the best =
treatment for ALL autistic children. They also stated that ABA is a =
recent approach to treating autism, when in fact it has been evolving =
for almost 50 years! They have also stated that only very young =
children can benefit from ABA treatment. We started Lovaas style ABA =
when my son was 5 1/2 years old, then switched to Verbal Behaviour a =
year ago. At age 5 1/2 years, my son was like a little "Helen Keller". =
He had no speech, no social or grooming skills, and no play skills. =
Today, he speaks up to 6 word sentences, constantly mands for the =
attention of his peers and his brother, reads writes and spells on a =
grade 1-2 level, and can play independently or with others =
appropriately. He is in a typical grade 4 class with a full-time EA who =
had no idea how to teach an autistic child, but allowed me to bring in =
my own staff of therapists to school for a carry-over of school and home =
teaching strategies based on ABA. The MCFCS states that the IEP is all =
that is needed for a transition from home to school for my son, when in =
fact most IEP's are not followed through, mostly due to lack of training =
for the teachers and EA's. I know this first hand, because as I stated, =
I had to train the EA's and teachers, and I also have recently become an =
EA. We continue to do home VB therapy for 3.5 hours a day and weekends, =
but as most of you know, it is very expensive because of constantly =
training new staff, consultants and seminars, our monthly expense is =
$1500.00 +. Why should decent, tax paying Canadians and Americans, pay =
out of pocket for treatment that is medically necessary for our kids at =
2 years of age or 22 years of age? We have a treatment that helps ALL =
autistic children but we have to sell our souls to get it. =20
I know this is lengthy, but I really need help with a response. Any =
comments are very welcome.
THANKS!!
Darla
(Mom to Ben and Johnathan)

[Deleted User]

Just to reconfirm my statement "I do know it's on a sliding scale and it is for children out of school whose parents want to have behaviour programs out of school hours".

To clarify what I meant is it is for children aged 6 -18 years of age who require behaviour therapy after school.

[Author]

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