[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

[Todd Dea]

MAJOR AUTISM PROGRAM CHANGES TO BE ANNOUNCED !!

Anyone seen this yet ?? The announcement is supposed to be at 11:30 this morning !!

http://www.publiceyeonline.com/archives/004273.html

[Andrew Kavchak]

The Toronto Star

Queen's Park protester wants government funds to help her autistic boy

August 18, 2009

Tanya Talaga

Queen's Park Bureau

For the past 22 days, single mom Maria Bunda has protested outside the front doors of the provincial Legislature with a sign fixed atop her backpack that reads: "6 years old, severely autistic boy, denied therapy, denied a chance."

Bunda, 47, silently paces back and forth in sweltering heat. She is there daily and vows to keep coming back until someone explains and reverses the decision to cut off provincial funding for her son Sebastian's intensive behavioural intervention (IBI) therapy.

"He desperately needs it," Bunda said. "I will be here as long as it takes, as long as I can."

There are 1,513 autistic children waiting for provincially funded IBI treatment and another 389 waiting for assessments throughout the province. As young children languish on wait lists, parents feel they have no choice but to pay the steep cost of $60,000 a year for the therapy. The longer children spend waiting, the harder it becomes to help.

Bunda is an oddity to the busloads of tourists visiting Queen's Park. One group from China sent their translator to ask what the problem was. "In Canada, don't they pay for everything in children's health?" the translator asks.

"No they don't," said Bunda, a waitress from Hamilton who spends the little free time she has standing outside with her sign.

Bunda did receive $5,000 a month from the province to pay for her son's IBI therapy beginning in early 2007, but a decision was made in November to terminate the therapy and funding. Instead, the government will pay for an assistant to accompany Sebastian to a regular school in September.

"The same amount of money the therapy cost is the same amount of money to send him to a school where he will not learn. They will not do the therapy there," said Bunda. Sebastian doesn't speak and is self-injurious. "This is not a matter of money. He needs to learn another way."

Bunda is not the first parent of an autistic child to resort to desperate measures, NDP Leader Andrea Horwath told the Star.

"These parents sell their homes, they liquidate all their assets to buy the services to help their kids," Horwath said.

To have treatment pulled is especially cruel, she added. "This is what is so painful for the parents – they watch the progress and when services are cut off they see them regress."

Horwath blames the Liberals for failing, after six years in office, to come up with a program that works for families and children.

Bunda has written letters to the premier, to provincial ministers and to Prime Minister Stephen Harper, in an effort to figure out why her autistic son and others are denied therapy. "They send me no answers," said Bunda. She posts her emotional daily struggle online at http://www.tooautistic.com.

The government is working to improve services for autistic children, said Kevin Spafford, a spokesperson for Minister of Children and Youth Services Deb Matthews.

"We are looking at broadening the range of supports," Spafford said. That includes setting up transition teams to deal with kids leaving IBI and entering school. Sixteen school boards now have transition teams and more are on the way.

[Andrew Kavchak]

Hi Folks,

After having spent many of my lunch hours in 2004-2006 protesting on Parliament Hill with a sandwichboard sign, I feel a degree of solidarity with any other parent who feels compelled to do the same as a result of the sheer cruelty of government.

Queen's Park is the home of Ontario's government legislature in Toronto. And now there appears to be another mother of a child who was cut off before he even had a chance and who is now protesting and making use of the internet. Please visit her Maryna Bunda's website at:

http://www.tooautistic.com/.

[Andrew Kavchak]

Hi Folks,

A few posts ago (June 23), I posted a message about how the federal government always uses the constitional division of powers argument as an excuse for doing nothing about the lack of autism treatment under Medicare, and how they were pursuing a National Securities Regulator notwithstanding the fact that securities regulation has been a provincial function (I believe under the "property and civil rights" heading in section 92 of the Constitution Act).

Well, here is an interesting update. This week the government of Quebec announced that they will go to court in an attempt to block the federal government's initiative. Obviously the federal department of Finance bureaucrats have been consulting with the provinces since the Minister of Finance announced his intention to pursue this about two budgets ago. During the consultation process Quebec obviously expressed its opposition to this perceived federal intrusion which would diminish Quebec's expertise in the regulation of capital markets and potential weaken its confidence when the next neverendum (oops! I mean referendum) comes around. However, even though a province with as much clout as Quebec is dead set against the initiative, the federal government is still pursuing it. There will likely be a court battle and appeals that will possibly set some precedents. This may take years and go to the Supreme Court of Canada. Who knows?

But the message here is clear: when the feds want something bad enough, they will pursue it, regardless of what the constition, over 140 years of jurisprudence, and the provinces say.

The bottom line is that the federal health ministers (like Tony Clement?), his or her parliamentary secretary (Colin Carrie?), and all the useless "yes men", party hacks, donkeys and sheep (Mike Lake?) who call themselves "Members of Parliament" can just stuff it when they tell us that the feds can't to anything about autism and Medicare because "it's provincial". The double talk and hypocrisy is too obvious.

And speaking of Quebec, below is a touching letter written by the father of a boy who had the misfortune of turning six in Quebec and having minimal assistance cut off…just like Cinderella turning into a pumpkin or something at midnight.

So Quebec will maintain its primitive approach to dealing with autism, but will fight to death over the right to maintain their fingers in the regulation of securities pie. No matter how much they may claim the contrary, the reality is that they are not "distinct" at all, but just as bad if not worse than the other provinces (which do not appear at this time to be opposing the federal national securities approach).
________________________

Help for autistic boy cut off when it's needed the most

Provincial rules dictate no funding for therapy when child hits 6

ANDRE G. BORDELEAU
The Gazette

Thursday, July 09, 2009

(This article was written by André G. Bordeleau, who is David's father.)

My name is David Bordeleau. I am autistic; I am afflicted with PDD-NOS (pervasive developmental disorder – not otherwise specified) sometimes called atypical autism. I was born with this syndrome but my parents weren't aware I was autistic until the director of a daycare I was attending suggested it might explain my behavioural problems. I was 30 months old at the time.

Finding out I was autistic was difficult for my parents. They made a lot of phone calls, consulted a lot of experts and spent a lot of money to give me the many therapies needed to help me catch up with the regular kids my age. Most of all, they were heartbroken when they found out. I am their only child and they felt bad for me. I came in unexpectedly late in their lives; they are now in their early 50s while I am 6 years old. Sometimes I have way too much energy for them.

When I was diagnosed, I barely spoke a few words. My parents first thought it was because Dad communicated with me in French and Mom in English. To help me catch up with the other kids my age, it was decided I would use only one language. My parents chose English because it was easier to learn.

At the last daycare I was in, I had a lot of therapies as well as a shadow. A speech therapist helped me increase my vocabulary. I finally became able to say complete sentences! An occupational therapist helped me with balance and physical activity. This helped me play better and longer with my friends. After a long wait, I finally got into the ABA (applied behaviour analysis) program of the Centre de Réhabilitation de l'Ouest de Montréal (CROM) at a rate of 20 hours a week.

Several ABA therapists have been assigned to me over the years and I loved them all because they were all very nice to me. I could see they really wanted to help me to get better. As of January 2008, another problem arose: I apparently also have ADHD (attention deficit hyperactive disorder).

Something changed drastically at that point: My temper tantrums got worse and I got angry more often. At times, I actually got violent even though this is not something I meant to do. My parents were taken aback by the change; my father even said my whole face has changed since the hyperactivity kicked in.

This made my ABA therapy even more crucial so I could learn to control my frustrations and my irritability. Unfortunately, my ABA therapy stopped May 26, three months after my sixth birthday. This is a provincial regulation and it did not matter whether I still needed the therapy or not. My dad has said repeatedly that the government took away my therapy at a time when I needed it the most.

My parents were getting desperate as the deadline loomed. First, my therapy was reduced from 20 hours to 10 and then my therapist was gone. I miss her terribly. My parents hired someone to come in every Saturday afternoon but they have to pay her out of their own money. My parents say this is expensive and it is hard on them but the therapist is very good for me so they decided to keep my therapy going for as long as possible.

My parents do not blame CROM or its employees; they are only following the rules. Rather, they blame the provincial government. My mom, Deborah Martin, says that in Alberta, kids like me get all the therapies they need until adulthood free of charge, as part of the provincial health-care system. My mom wants to move there, my dad doesn't. This is causing a lot of tension between them.

My parents are now desperately looking for someone to help me. With CROM gone, Mom says I need a therapy coordinator to monitor my progress as well as a therapist to follow up and keep helping me. All of this will be very expensive and my parents don't know where they will find the money. I don't understand this. Why does the Quebec government refuse to help me?

[Andrew Kavchak]

Growing wait for subsidized ABA a violation of children's human rights

TORONTO, June 30 /CNW/ – More than 1,500 children with autism in Ontario
are waiting for years to receive government-funded ABA therapy, and as a
result, they are regressing in their skills and missing out on the chance to
live a normal life, says Sharon Aschaiek of Autism Resolution Ontario.

"ABA has been shown to be most effective in children when they receive it
intensively in their early years, yet in Ontario, children with autism spend
their early years languishing on a waiting list," says Aschaiek, mother of
Jaiden, 3, who has autism, and core member of the parent-run advocacy group,
in response to new waitlist information released by the Ontario NDPs. "By
denying this vital intervention to children with autism in a timely and
sufficient manner, the government is neglecting their basic developmental
needs, and violating their civil rights."

Today, Ontario NDP leader Andrea Horwath issued a public statement with
information on the newest waitlist numbers for the province's publicly funded
autism intervention program. As of March 31, 2009, there were 1,513 children
waiting for treatment – up from 1,063 in December 2008 – and 389 children
waiting for assessments to qualify to receive publicly funded ABA. In total,
more than 1,900 kids with autism are waiting to receive, or waiting to qualify
to receive, government-funded ABA.

"This is an area we know is suffering greatly from lack of government
resources. It's time that this government became a champion of children, not a
champion of waiting lists," said Horwath in her statement about this issue.

"Parents are paying exorbitant amounts out of their pockets to obtain services
in the absence of a good government program."

Indeed, parents of children on the waitlist have no choice but to pay for
expensive private ABA, which costs about $50,000 a year or more. This extreme
cost causes immense financial hardship for parents, and ultimately puts
sufficient therapy out of reach for most children.

"We can only afford a few hours a week of intensive ABA for my son," says
Leah Kalvari, mother of six-year-old Mendy, who has been waiting for three
years for subsidized ABA. "Not only has our son lost his invaluable early
years, but our whole family has suffered tremendously seeing him lose skills."

Also revealed in Horwath's statement was the fact that 102 children also
had their subsidized ABA therapy terminated by the end of the first quarter of
this year. As well, Horwath learned through a Freedom of Information Act
request that a pilot program that was to be developed to bring IBI into
schools still doesn't exist, despite the McGuinty government's claim to the
contrary.

"Both the Ombudsman and the Child Advocate have said there should be more
services for children with special needs, but the McGuinty government is
cutting services instead," Horwath said. "Every child in Ontario has the right
to an education and should receive the supports required to meet their
educational ability."

Raising awareness about and working to change the ABA waitlist situation
is a central objective of ARO, along with addressing the ongoing premature
termination of children's ABA without evidence-based cause, and making
sufficient and customized ABA available to kids in school.

At its launch on April 2, 2009 – World Autism Awareness Day – the
advocacy group issued the government a one-year challenge to live up to its
obligation to address the basic developmental needs of some of its most
vulnerable constituents by making publicly funded ABA more accessible.

Currently, ARO is leading an ongoing, province-wide, high-profile public
awareness campaign to alert the public about the provincial government's
neglect of and discrimination against kids with autism, and to promote
practical and cost-effective solutions to resolving the autism crisis in
Ontario. This fall, ARO is initiating a caravan to meet directly with GTA
families in the autism community and to achieve its goals.

For further information: To learn more about ARO, including the upcoming
caravan, and to get involved in achieving social justice for kids with autism,
contact Sharon Aschaiek at (905) 370-9871 or info@autismresolutionontario.com,
or visit http://www.autismresolutionontario.com.

[Andrew Kavchak]

During the last provincial election we had a demonstration in front of the Premier's constituency office here in Ottawa. His Executive Assistant came out and told me that the Liberal government of Dalton McGuinty was proposing a pilot project for IBI in the schools and he figured that the matter was now resolved.

Well, well… here we are a few years later and what? "…still does not exist…"

Is it really possible that so many would have so little shame?
__________________

From CTV.ca

Autism treatment wait times growing, warns NDP

Updated: Tue Jun. 30 2009 12:14:36 PM

The Canadian Press

TORONTO — Critics say the backlog of autistic children waiting for crucial therapy in Ontario is growing at an alarming rate and in some cases leaving parents to pick up the tab for costly treatment.

NDP Leader Andrea Horwath says as of March 31, there were 1,513 children waiting for treatment — up 450 from December.

She says 389 children were waiting for assessments in that period, while at the end of last year 102 children had their services terminated.

Horwath says that as waiting lists grow, parents are paying out of their own pockets to obtain services such as Intensive Behavioral Intervention, or IBI.

She says a pilot program to bring IBI into schools still does not exist and is calling for regular, public reporting of wait-list numbers.

The government came under fire earlier this year when it was accused by critics of arbitrary cutting off funding to children in need of IBI to reduce wait lists.

It has denied such a move and said it was had been providing therapy for autistic children and working to improve services.

[Super Dad]

It's not just a different country; it's a different world…

~*~*~*~*~*~*~*~

http://www.law.com/jsp/article.jsp?id=1202431667002

Michigan Class Action Settlement on Autism Treatment Hailed as Landmark Case

Tresa Baldas
06-23-2009

In what plaintiffs lawyers are calling a landmark autism case, a Michigan insurance company has agreed to reimburse at least 100 families for costs involving treatments for their autistic children.

The $1 million class action settlement from Blue Cross Blue Shield of Michigan comes amid a legislative wave in which a growing number of a states are passing laws that require insurance companies to pay for autism treatments and screenings. To date, 13 states have such laws, the most recent being Connecticut, Colorado and Nevada. New Jersey is currently considering an autism bill, and Pennsylvania's law goes into effect July 1.

The June 17 Michigan settlement, meanwhile, has autism advocates hopeful that insurance companies will stop claiming that behavioral therapy for autistic children is experimental, and start paying for it.

"It is a significant victory for the families, obviously, and it marks a trend, hopefully, that insurance companies will start to look at autism treatment differently," said Areva Martin, an attorney at Los Angeles-based Martin & Martin who is currently handling about 30 autism cases. She believes the labeling of autism treatments as experimental is "absurd."

"It's a neurological condition similar to a patient that has a stroke," Martin said.

In the case, Johns v. Blue Cross Blue Shield of Michigan, filed in the Eastern District of Michigan, the family of an autistic child sued Blue Cross for allegedly failing to acknowledge that a treatment known as applied behavioral analysis is scientifically valid. ABA therapy attempts to change behavior through positive and negative reinforcements.

In the suit, the plaintiffs alleged that Blue Cross' pattern and practice of characterizing ABA as "experimental" was arbitrary, capricious, illegal and contradicted by many years of scientific validation.

Blue Cross sought dismissal of the case, but a judge permitted it to go forward.

The case settled shortly after plaintiffs counsel obtained a court order requiring Blue Cross to produce documents that validated the effectiveness of ABA. Among the documents obtained was a draft of a 2005 Blue Cross Blue Shield medical policy, which stated: "Applied behavioral analysis (ABA) is currently the most thoroughly researched treatment modality for early intervention approaches to autism spectrum disorders and is the standard of care recommended by the American Academy of Pediatrics, National Academy of Sciences Committee and the Association for Science in Autism Treatment, among others."

Blue Cross' documents also stated: "The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions."

"I think we had 'em. Their files were so damming," said Gerard V. Mantese, of Troy, Mich.'s Mantese & Rossman, one of two lawyers who represented the plaintiffs. "We kept hearing from Blue Cross that this is experimental, we've researched it. So when we sent our discovery requests saying, 'Show us what you have,' their file looked almost like my file. It had paper after paper supporting ABA therapy."

[Andrew Kavchak]

The tale of two different policies in two different countries…

Hi Folks,

Well, this is interesting. For the past couple of years the federal government, particularly the current incumbents, have been using federalism and the division of powers system in this country as an excuse for doing nothing on the autism front and not moving on a National Autism Strategy. Of course, the feds have developed national health strategies for a number of health conditions, but not autism. Anyone who has engaged in lobbying or observed the debates knows the standard lines that national Health Ministers like Tony Clement have used. The lines typically involve lecturing autism parents about how Canada and the system "work", etc.

In fact, the way it works, is that not only will the federal government not approve (or even study in a House of Commons committee) any proposed law that deals meaningfully with autism, they won't even consider a bill that merely proposes to create an annual "autism awareness day". The excuse that Conservative MP Mike Lake offered with respect to Senator Munson's bill was that the "whereas" clauses were problematic. Apparently things like the prevalence rates are "controversial". The bottom line is that the government does not want to rock the boat and is particularly respectful of the jurisdiction of the provincial governments, and won't even consider negotiating some sort of arrangement to actually improve conditions for Canadians across the country.

But wait! For several years now the government has been working behind the scenes to dramatically change the way the securities markets are regulated in Canada. Historically (and constitutionally – "property and civil rights" – section 92 of the Constitution) this has been an entirely provincial matter (as is the delivery of healthcare). Now check out the article below about how the federal government is creating a national securities regulator.

Federal MPs and Governments can make things happen…if they care to.

Now contrast the Canadian situation where our federal MPs clearly don't care about Canadians with autism to the story further below about the passage of an autism bill in the UK Parliament.

Canada Day is coming up. How will you spend the day?

________________________

From: CTV.ca

Ottawa moves to create national securities regulator

Updated Mon. Jun. 22 2009 8:27 PM ET

CTV.ca News Staff

Ottawa took a long-awaited first step Monday in unifying the country's patchwork of stock market regulators into one national body.

In making the announcement, Finance Minister Jim Flaherty said the country has a strong financial and banking system, yet no national watchdog for the markets.

"The one big hole we have is in securities regulation, and that's the hole we're trying to fill here," he told CTV News Channel from Ottawa Monday afternoon.

Flaherty also announced that a team of financial and government insiders has been appointed to help bring about the change smoothly.
Flaherty said that Doug Hyndman, the head of B.C.'s securities commission, will be in charge of the new transition team.

Bryan Davies, a former Ontario government official and the current chair of the federal Canada Deposit Insurance Corp., will take the team's vice-chair's position.

The creation of a national securities body has been the subject of rampant speculation in financial circles since the Conservatives made it a priority to forge such a group back in 2006.
Currently, each province is in charge of its own securities trading — an anomaly among wealthy nations, which Ottawa says costs the Canadian market billions each year in global investment.
But each province and territory will have the right to stay independent if it so wishes, said Flaherty.

"We're not going to impose anything on anybody," he said, noting that Ontario and B.C. are already on board.

"I hope over time, that we have a true, national securities regulator."
_________________________________

From: http://www.politics.co.uk/mps/press-releases/party-politics/conservatives/mp-welcomes-autism-bill-progress-$1305970.htm

MP welcomes Autism Bill progress

Monday, 22, Jun 2009 12:00

Hemel MP, Mike Penning has voiced his support of the Autism Bill as it received its “third reading” in the Commons. The Bill is a Private Members Bill sponsored by Chesham and Amersham MP Cheryl Gillan.

The proposals in the Bill aim to improve recognition of children and adults with autism and to ensure their needs are addressed – especially during the crucial transition from childhood to adulthood.

Intervening on a speech by Cheryl Gillan, where she praises fellow MPs and outside organisations for their work on the Bill, Mike said:
“Before my hon. Friend praises more Members from across the House, may I pay tribute to her work in taking the Bill through its passage—something which is, as she said, a tribute to the House? She has followed on from the fantastic work of my hon. Friend the Member for Tiverton and Honiton (Angela Browning), who previously promoted such a measure. The work of my hon. Friend the Member for Chesham and Amersham (Mrs. Gillan) in bringing proceedings to an excellent conclusion should be acknowledged on the record.”

On leaving the chamber, Mike added:
“This Private Members’ Bill has the potential to transform thousands of lives and puts a duty on local authorities to provide effective support and help for children and adults with the condition.”

Having cleared the Commons the Bill now moves to the House of Lords.
_______________________________________

[Andrew Kavchak]

Hi Folks,
Here is the latest article submitted for the Autism Update column in the "Access Now" newspaper of the Disabled and Proud organization in Ottawa. (Soon to be posted at whttp://www.accessnownews.ca)
________________________________

Autism Update

By Andrew Kavchak

June 10, 2009

Every once in a while there are developments in the world of autism that provide for hope and optimism. And then there is always some politician who can really spoil things. Consider this latest example. On May 9, 2009 the ctv.ca news website reported the results of yet another study showing that children with autism who receive years of Intensive Behavioural Intervention (IBI) therapy can significantly improve, and that in some cases recovery is possible. University of Connecticut psychology professor Deborah Fein carried out a study funded by the National Institute of Mental Health and concluded that between 10 and 20 percent of kids can recover. In fact, since the Dr. Ivar Lovaas’ breakthrough study in the 1980s many subsequent studies have repeatedly shown that the majority of kids who are diagnosed with autism at an early age and receive IBI for a period of several years can make significant progress in their development and a percentage may even go so far as to lose their diagnosis. Professor’s Fein’s work is not new to people in Ottawa. She made a presentation on the same topic at Carleton University on October 17, 2007, as was reported by the media at that time. Did any of the health bureaucrats or politicians pay attention? Is the treatment of a disorder that affects 1 in every 150 kids not important enough?

Just three days after the media reported Dr. Fein’s latest successful study on the treatment of autism, the issue of a National Autism Strategy came up in the House of Commons. Those who have been reading this column for the past few years will remember that on December 5, 2006 the House of Commons voted in favour of Andy Scott’s Motion M-172 for the creation of a National Autism Strategy that would include: “(a) the development, in cooperation with provincial/territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder; and (b) the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder.”

Regrettably, motions are not binding and the federal government has done nothing since 2006 to implement the motion. Autism treatment is still not covered by Medicare. On May 12, 2009, Shawn Murphy, MP, stated that: “This House and all Canadians are extremely disappointed that there has been no strategy. There have been no meetings with the provincial counterparts, no standards, no study or concrete actions, nothing, zilch” and he asked Mr. Colin Carrie, the Parliamentary Secretary to the Minister of Health, “why has nothing been done?”

Colin Carrie had a great opportunity to speak meaningfully to the issue. Instead, it appears that he simply read a standard prepared speech that was written by bureaucrats who were more familiar with George Orwell than autism studies. Here are some gems from his reply: “The Government of Canada recognizes that autism is a serious health and social issue affecting many Canadian families and individuals from all walks of life, including parliamentarians. We do not know what causes autism. We do not know its prevalence in Canada . We do not know the effective treatments and interventions.” Huh? Don’t know effective treatments? The whole autism, medical, psychology, academic and scientific communities know that IBI is not only evidence-based effective treatment, but that it is the only treatment that has been repeatedly validated in studies for over two decades. Is it possible that everyone would know this except the government and Colin Carrie?

But wait! In the same speech Colin Carrie revealed that he also has a child with autism. As he said: “I myself have a son who has been diagnosed on the spectrum.” In fact, Colin Carrie came to demonstrations that I organized on Parliament Hill when he was in opposition. Several autism treatment advocates (including me) have personally met with him before and after his becoming a member of the government caucus. He has known for a long time that IBI is an effective treatment for autism. While the autism community hoped that he would help us once he was at the Cabinet table, he has simply proved once again that politicians consider their careers and good standing in their parties to be their only priority and will say whatever the party line is, regardless of the extent to which they know it is factually incorrect and misleading.

Mr. Carrie concluded by stating: “This government has done more for autism and the autistic community than any government, and that member should know that because he was a member of a previous government that did absolutely nothing.” The reality is that we still don’t have a National Autism Strategy and not one Canadian with autism has benefited from anything the federal government has done in terms of access to treatment. One day Canada may develop and implement a meaningful National Autism Strategy, but it will likely take a new crop of politicians with a greater degree of respect for the truth and a different set of priorities.

[Andrew Kavchak]

Hi Folks,
I got a call last night from a colleague in St. John's who told me that there was a lot of debate about autism in the legislative assembly of Newfoundland & Labrador yesterday. Here is some of it…
____________________
Newfoundland and Labrador
House of Assembly Proceedings
Wednesday, May 27, 2009

Oral Questions
…

MR. SPEAKER: The hon. the Leader of the Opposition.

MS JONES: Thank you, Mr. Speaker.

Last year I asked the Minister of Health if there were plans to implement an applied behaviour analysis, an ABA program for autistic children over the age of six. At that time the minister responded that him and the Minister of Education would sit down, they would have a discussion around the ABA program, the supports that were provided to autism both in the education system and in health and community services.

I ask the minister, that was a year ago: Did you ever have those discussions with your colleague and if so, was any progress made to help autistic children?

MR. SPEAKER: The hon. the Minister of Health and Community Services.

SOME HON. MEMBERS: Hear, hear!

MR. WISEMAN: Yes, I did have such a discussion and there has been much progress, Mr. Speaker, and I am certain my colleague, the Minister of Education, would be able to elaborate as well on some of the things we have done with children with autism.

Later today in debate, it is going to be the subject of a private member’s resolution and I am certain that the people of Newfoundland and Labrador will get an opportunity to see first-hand a number of the things that we have been doing to support children and their families who are living with autism.

SOME HON. MEMBERS: Hear, hear!

MR. SPEAKER: The hon. the Leader of the Opposition.

MS JONES: Thank you, Mr. Speaker.

With complaints from the parents of autistic children who say that school officials are not properly trained to meet their children’s needs, I ask the minister today: Has there been any new training programs established for officials so that the needs of autistic children can be met in our education system?

MR. SPEAKER: The hon. the Minister of Education.

SOME HON. MEMBERS: Hear, hear!

MR. KING: Thank you, Mr. Speaker.

I thank the member opposite for her question. It is certainly a very important topic, and as my colleague has just alluded to a few moments ago, one that we are going to have a great amount of time later this afternoon to debate and discuss.

I will say to the member opposite, if she is interested in listening to me give her an answer for a moment, we are certainly indeed working with the Autism Society and school districts. We have committed a significant amount of money over the last twelve months in particular towards teacher professional development along with a number of other initiatives that are supported by parents and the Autism Society in the Province to support ongoing initiatives in the K-12 sector.

SOME HON. MEMBERS: Hear, hear!

MR. SPEAKER: The hon. the Leader of the Opposition.

MS JONES: Thank you, Mr. Speaker.

As the minister indicated, we will be debating a private member’s motion today on existing autistic services for children.

I ask the minister: With the increasing number of children diagnosed with autism in our Province each year, does the minister intend on extending the ABA program to children beyond the age of six?

MR. SPEAKER: The hon. the Minister of Education.

SOME HON. MEMBERS: Hear, hear!

MR. KING: Mr. Speaker, I am certain, based on the fact that they would have consulted before the private member’s motion today, that the member opposite would know that there is not unanimous agreement that the ABA is the absolute, best alternative for students in the K-12 system. So, no, I am not committing to that here today right now but I will talk a bit more a little later this afternoon about a number of services that we are committed to.

I will say to the member opposite, that we are engaged with parents and with the Autism Society of Newfoundland and Labrador, and I will say to the member opposite that not every one of those people in those organizations are committed to ABA for K-12. There are alternatives that work much better for students from each end of the autistic spectrum.

SOME HON. MEMBERS: Hear, hear!

…………..

Orders of the Day

Private Members' Day

MR. SPEAKER: This being Private Members’ Day, and it now being 3:00 o’clock, I now call on the hon. the Member for the District of Cartwright-L’Anse au Clair and the Leader of the Opposition to debate her private member’s resolution.

The hon. the Member for the District of Cartwright-L’Anse au Clair.

MS JONES: Thank you, Mr. Speaker.

I am certainly pleased today to rise on behalf of children in our Province who suffer from autism and are going without the appropriate services that they should be getting beyond the age of six.

Mr. Speaker, for the record, I would like to read my private member’s motion into the records of the House.

WHEREAS Autism Spectrum Disorders (ASDs) are lifelong neurological disorders that affect a person’s development and how the brain processes information; and

WHEREAS ASD is the most common neurological disorder affecting children; and

WHEREAS Newfoundland and Labrador had a prevalence rate of 1 in 132 in 2008 and the rate is expected to be even higher for 2009; and

WHEREAS the number of people receiving a diagnosis of autism is on the increase in Newfoundland and Labrador; and

WHEREAS evidence-based research shows that the lifelong cost of assisting a person with autism can be reduced if the child receives early diagnosis, effective treatment and adequate supports; and

WHEREAS all direct government programs for children with autism end after age six; and

WHEREAS schools do not have adequate resources and there is a demonstrated need for programs;

BE IT RESOLVED that government extend autism services offered for children below six years of age to all children.

Mr. Speaker, we feel very strongly about this resolution, only because we have had the opportunity to meet with parents and grandparents and to discuss the challenges that children are experiencing in our school system, children who suffer from autism.

A year ago we raised this issue in the House of Assembly, and we left the issue with a commitment that was untaken by the Minister of Health that he and the Minister of Education would have dialogue to look at what further services could be provided for children who suffer from autism who are in our school system. Well, a year later, we certainly did not get any feedback in terms of what were additional supports or satisfactory supports that would be launched to be able to meet the needs of these children.

Mr. Speaker, first of all, I think people should realize and understand that there is no effective means to prevent autism, and there is no full effective treatment or cure, and I think anyone who is familiar with this disease will understand this. Therefore, it becomes a disease that requires lifelong support and lifelong treatment. It does not start at the time of diagnosis and end at the age of six. In fact, it is a service that needs to be continued. The gap in our service today in this Province exists for children between the ages of six and eighteen, and this is where we hope that government will want to focus more energy, more supports and more resources.

Even since I tabled this resolution in the House of Assembly, I received a number of e-mails from people in the Province, and have been listening to what they have had to say, or reading what they have had to say, but it is amazing how many people out there, how many families out there, in this Province who have children who suffer from autism feel like they have nowhere to turn most days in terms of gathering more supports and more services.

Mr. Speaker, there are a couple of things I want to point out. First of all, that it takes seventeen months in this Province to have a child with autism diagnosed; it takes seventeen months. Even after diagnosis is done, oftentimes it takes longer before treatment is engaged.

Mr. Speaker, we are all aware of the case of Gloria Sparkes, a grandmother in this Province of two autistic children, who took her case to the Supreme Court because she felt that her grandchildren were not getting the services of early intervention that they should be getting, and she won her case. She won her case which stated that once children were diagnosed they had to receive the services of early intervention within thirty days.

Today, Mr. Speaker, in this Province those timelines are being met, but the delay now is getting the diagnosis. Because of the actions of one woman and her challenges in the courts, children today that suffer from autism will get the intervention within an appropriate period of time, but today they are not getting the diagnosis. They are waiting up to seventeen months to be diagnosed. What I have been told and the literature that I have read, tells us that early intervention of children with autism needs to occur as early as possible, within the first two years of a child’s life. Because of the backlog we have in this Province of having children diagnosed, and the fact that there is only one development psychologist to serve the whole Province, our children are losing most of the first two years of their lives. That is one issue.

The other issue, Mr. Speaker, is the issue of what happens when a child becomes six years of age. We have a system today in the Province of early intervention, whether that happens when a child is two or three, whereby a child is led through our entire system. They are given the applied behaviour analysis and they are supported by that program to age six. They are given the services of communications, speech and language pathologists, they are given occupational therapy. Mr. Speaker, all of their services are provided for them. They are taken by the hand and they are led through all of the resources that a province can provide for these children.

What happens at age six? At age six, when these children have to go into our school system, those supports do not exist in the same manner and parents have to look for the resources themselves and finance those resources. The reality is we know that does not happen for every single child. Some parents have the opportunity to home school their children with a new set of challenges and problems – as I am learning – that exist around that, but not all children have that opportunity. Many of them have the opportunity to be able to hire Autism Partnership, which is a private firm that the Province engages to support these children to the age of six, but not all families have the financial ability to do that.

So, Mr. Speaker, many of our children once they reach the age of six that suffer from autism, do not have the supports they require within the system. I know that the Minister of Education today is going to stand in his place and he is going to quote to me information that says that the program may not work for all children. He will tell me that ABA may not work for every student that suffers from autism in the school system. He may have some points, but, Mr. Speaker, Dr. Ronald Leaf who has been the Autism Partnership firm that this government has hired and seconded for years to provide these services to children in our Province, in his book clearly indicates that ABA is practiced in all types of settings with all types of populations and age groups and have been used to improve many behaviours, including social skills, job performance, language, and language acquisition.

This is the same firm that the provincial government engages and pays for services for children in the Province up to age six, who is saying that there is room for this in our school system; that children have the ability to learn and foster from this program if it was available to them. In fact, Mr. Speaker, the program is used in schools all over North America. All over North America, and there are a number of journals and books that are written as testimony to the success of that program for children.

Now, Mr. Speaker, the minister will also stand today and tell me that they have a provincial pilot starting in September in our school system, to talk about the inclusion model that will be looked at in fifteen schools across the Province. Mr. Speaker, we have no problem with this model. We have no problem with incorporating it into the schools and doing the pilot. What we do have a problem with is ensuring that children who suffer from autism will get the services that they need as part of that program, because today many of those do not exist in the school system. We want to know if children of autism will have individual learning as part of that program. We want to know if they are going to have dedicated services, such as occupational therapy. We want to know if they are going to have student assistant teachers, not just assistance in the classroom, but student teacher assistants, like is being used in Nova Scotia and in New Brunswick and in Prince Edward Island, where people are trained to actually be teacher assistants in the classroom to students like this, who suffer like this, Mr. Speaker.

We know that no such designation even exists in the Province today. The designation does not exist in Newfoundland and Labrador. The training does not exist in Newfoundland and Labrador, yet it is the support that is being used in other schools in Atlantic Canada to help these children.

We want to know if ABA – why not look at piloting ABA in the classrooms? Why not piloting it in the schools? It can be incorporated in the school system as has been written by experts, experts that your own department have hired to do work in this Province and they are telling you in those books that they have authored, that it can be incorporated into the educational program.

So, Mr. Speaker, there has been a realization over the years that children that have a unique way of learning, that have unique disabilities, have been accommodated in our school system. We have seen it with children that are deaf, where there are proper supports and technology provided to them, where they have been able to communicate using sign language. We have seen it with our children that are blind, that have been given proper technology and supports in the classroom and have been given the opportunity to communicate in Braille. We have seen it with children who have learning disabilities, where there has been supports developed for them in the school system.

Today we are asking that government recognize that autism, too, is a unique disability, learning disability that these children face and that they, too, need to have the proper supports. We know without these supports, most children of autism suffer from behavioural problems and because of that, our school system have practically expelled these students.

I have dozens and dozens of cases documented here, dozens of cases of where children who suffer from autism are being expelled in our Province’s schools in this Province. Because, Mr. Speaker, the teachers in the classroom do not have the supports to be able to deal with the behavioural issues that develop when these children are not taught to communicate properly and effectively.

Mr. Speaker, is it right for these children to be sent home from school on a daily basis because the resources are not in the school to deal with their problems? They need more supports, and this government has the ability to do that. You recognize that before the age of six the resource is needed, you recognize that once they turn the age of eighteen that they can go back and get those supports, so why can’t they get them through their school years?

Mr. Speaker, every child must have the means to communicate in order to learn. That is a requirement in our school system, and I think we need to understand that. A child with autism – I have had cases quoted to me where they have been in a classroom with a broken hip, and sent home because they did not know what was wrong with the child; a child who has been suffering from appendicitis and could not communicate what was wrong with them, and they were just sent home, not being able and not knowing how to deal with their problems. This happens every day and it is unacceptable for children in our system.

In order for parents to continue to support these children they have to pay for it themselves, with an average cost – I have one e-mail here that was sent to me yesterday by a gentleman who said this year it will cost $12,000 for him to have supports for his child.

MR. SPEAKER (T. Osborne): Order, please!

I remind the hon. member that her time for speaking has expired.

MS JONES: Thank you, Mr. Speaker.

I will certainly conclude my comments.

MR. SPEAKER: Does the hon. member have leave?

AN HON. MEMBER: By leave.

MR. SPEAKER: The hon. member, by leave.

MS JONES: Thank you, Mr. Speaker.

I will certainly conclude my comments. There are so many things that I could address as part of this, especially within the school system, in dealing with the recommendations that came out of the Pathways report and the ISSP/Pathways report to deal with teachers, to deal with student assistants, to deal with guidance counsellors and psychologists. I do not have time to get into all of that today but there were good recommendations, and they need to be followed.

Also, Mr. Speaker, I have had the opportunity to have the advice of Dr. Philpott, who I know has incorporated one course right now into the Faculty of Education at MUN that deals with this subject area, but the other course is optional. I do not think it is good enough. I think that more needs to be done if we are going to ask teachers in a classroom to deal with disorders of this nature and to deal with children of this nature. Not only do the children need to have proper supports, but so do those teachers in the classroom.

MR. SPEAKER: The hon. the Minister of Education.

SOME HON. MEMBERS: Hear, hear!

MR. KING: Thank you, Mr. Speaker, and I certainly thank the member opposite for bringing the motion forward, and for providing me and some others with the opportunity to have a chance to have a few words.

I want to say up front that I certainly do recognize the importance of the motion, and the importance, perhaps, not so much of the motion as the topic that we are discussing here today: the whole issue of autism and autistic children, and autistic families, if I might use that term perhaps a little looser.

My professional background, for the benefit of the House, was in the education system. I spent just about twenty years as a classroom teacher, a school principal, a district administrator, and I recognize many of the things that the member opposite has talked about. I have experienced those.

I am not going to stand here and – as a matter of fact, I am not going to stand here and debate many of the things that she suspects I will debate, because I do not think it is the place for it and I do not think it is the kind of debate that I want to engage in.

I also recognize from a very personal level the challenges that we have for autistic children. My own family is affected by that, and I have gone through the struggles on a personal basis for many, many years, and witnessed many of the trials and tribulations that families go through: broken homes, where husbands and wives and siblings have issues between each other in trying to reconcile what the right approach is to dealing with a child who has autism, or Autism Spectrum Disorder is perhaps the more appropriate term. We often loosely refer to it as autism, but I think Autism Spectrum Disorder is probably the clinical term.

I have seen first-hand, Mr. Speaker, the kinds of things that occur at home in families. For the benefit, I am sure, of those who may be watching this at home, or perhaps in the audience even – I am not sure – if any of these people who are here are associated with this, I am sure they can all account to some of the things that I am saying here right now.

I am not going to engage in the debate, Mr. Speaker, along the lines that perhaps the Leader of the Opposition was anticipating that I would. I do want to say up front that I do recognize the challenges at home, and I recognize the challenges in school, and I will say that we recognize, as a government, as I am sure the Opposition does, that things are not perfect.

I will share a quick story. When I taught junior high school, many years ago now, I taught an individual who was diagnosed with attention deficit disorder – a little different than the debate we are talking about, but the story is relevant – and the individual was very challenged. It was very challenging for the teachers and for me, personally, very challenging for the parents, and very challenging to establish relationships that made the classroom conducive to learning and that made the classroom a place where the student was able to learn and I was able to teach, and many of my colleagues who taught that particular child.

I share that, Mr. Speaker, because many years have passed and it was only yesterday that the mom and that particular student presented themselves in my office to say hello and to share a bright spot in their life: that this morning the son was graduating from Memorial with a Bachelor of Arts degree.

SOME HON. MEMBERS: Hear, hear!

MR. KING: That is a good story, Mr. Speaker, but the point of my story was not what I just said. The point of my story was that the mom shared with me that all through the K to 12 high schooling, this son – it was a male – had autism and it was never diagnosed until he got into university. So, all through the K to 12 schooling, we in the education system, and the medical professionals and the doctors who dealt with it, were treating him with drugs that applied to attention deficit disorder when, in fact, it was not the problem at all.

I share that, Mr. Speaker, to drive home the point that I am very, very familiar with what we are talking about today and I am certainly very concerned with the topic.

Back in Question Period, the member opposite asked a question of the Minister of Health and Community Services and he said this – but I can reiterate it – that in fact we have had a tremendous dialogue, the minister and I, not only since this motion came forward but even in advance of that, about where we need to go as a government to respond to the needs of, first of all and most importantly, the needs of the children in the system; secondly, the needs of the parents and the families who are affected by this and who struggle on a daily basis, I am sure, as I see my own struggle; and the needs of the teachers who are also struggling to do their best to help children, in many cases when they just do not understand what the problem is, is perhaps a very simplistic way to put it, a lack of understanding of the disorder and what it is all about.

We do work in the system. I recognize the member opposite and her comments around ABA. I am familiar with ABA. I am sure my colleague will speak to it a little later on, the Minister of Health and Community Services. I am familiar with the fact that ABA is a program that many people feel is working and is successful. I also need to acknowledge, Mr. Speaker, that it is only one of many programs. I think my relative shared with me that Son-Rise might be another program that is used by some. So I am not acknowledging that ABA is the best program but I do acknowledge that, based on the consultations and discussions that I have had with my colleague here in the House, as well as with professionals in both departments of Health and Community Services and Education, that it is a program that many people feel works for children.

Also, Mr. Speaker, I acknowledge the challenges that parents tend to feel when children enter, not so much kindergarten, because there is a phase out process when you enter the kindergarten grade, but when you move beyond kindergarten and into Grade 1 and the full-fledged K-12 system where you are attending school full time on a daily basis. I also acknowledge that people find it extremely challenging that the kinds of supports that we offer there are not always where people would like them to be. There are often struggles trying to move from almost a culture shock where you are used to ABA on such an intensive basis until the child goes to school and then while somewhat reduced in kindergarten, you still do have the presence of this support. Then when you come into Grade 1, the kind of services and supports that are provided are different.

Many of the supports, Mr. Speaker, that we try to provide currently around occupational therapy, speech language pathology and professional development for teachers, those are certainly important supports. I say that upfront. I think families, certainly the families that I have dialogued with at least, would acknowledge that when they get those supports they are important and they are, in fact, valuable to the child. When the teachers get the proper training there is great value in what the teacher can do in a school with a child in the classroom.

Mr. Speaker, I want to say a couple of things, and I am mindful of my time. I just want to make sure people of the House are aware that when we talk about the kinds of things government has been doing, I want to remind people that through our involvement in the Council of Atlantic Ministers of Education and Training (CAMET), there has been a process introduced, a review of autistic services, the supports to education for autistic children and families, the supports that are delivered across Atlantic Canada. The intent is to try and seek out, for lack of a better word, common ground on where each of the provinces individually doing good things. From that, formulate collectively a plan that will help us bridge a gap. The gap that I think people readily admit, people here in the House readily admit that exists from moving from ABA and into the K-12 system. We are certainly very pleased to be a part of that and to support that consultation process.

Also, Mr. Speaker, I am certainly very pleased to make a comment on our own initiative here in the Province. We do have an advisory committee on student support services, but more specific to that, we have had some discussions with the Autistic Society of Newfoundland and Labrador. As a government and a department, our intention is to launch a consultation process in the very near future. The terms of reference have been developed for the committee and the advisory group and the kinds of work that it will engage in. It was our plan, well in advance of today, Mr. Speaker, to launch that consultation process and talk to people throughout the Province about where it is we can bridge the gap.

Mr. Speaker, I am going to jump right in, mindful of my time. I am going to make an amendment to this motion, and here is why I am going to make the amendment. As the motion currently reads, word for word, it would say to this House that if you adopt the motion that you take ABA and you apply it to the K-12 system. Now, Mr. Speaker, there are a number of reasons why that cannot be done, and I am not even going to try to stand here in front of the cameras or the people here, or the people out there and say that I have a scientific explanation for that.

What I can say to you, Mr. Speaker, is that I have been told clearly by parents and by members of the Autistic Society that ABA is not the answer for every child in this Province. Autism comes on a spectrum where you have very, very high functioning children who may have simple things, like an inability to get along socially with people and then you have the other end of the spectrum where the child has significant difficulty in all aspects of life, including academics.

Mr. Speaker, I believe that the appropriate process for us to follow is to follow our consultation process to engage people in the Province and people up here immediately, and I think those people need to tell us where they feel we can go in the K-12 system and what kinds of services we can improve upon. For example, I mention these because they have been mentioned to me, not because I have the answers, but occupational therapy and speech language services are two that we deliver. The other piece that we are responsible for is the professional development of teachers, and I think one of my colleagues mentioned it earlier in Question Period.

Now, I am not saying those are the answers. Let me very clear here. I do not know if those are the answers but what I have heard from many people is that when they get those services, those services are extremely valuable to the children and the families. The complaint, for lack of a better word, is that there are not enough of those services out there. I believe if we adopt this motion, Mr. Speaker, we are locking ourselves into one program that may not necessarily be for the benefit of the majority of autistic children. I believe that it might be an answer for some and it may be able to be brought in as part of a solution to go forward but I believe that there are many other alternatives that parents are going to say to us, we need to invest our money and our time and our resources in to better improve what we are doing for autistic children in the Province.

Having said that, Mr. Speaker, I would like to read an amendment, and I would ask the member if I could have leave in the event I go over time a little bit, with permission?

Mr. Speaker, I would amend the motion that is currently before the House, first of all: (a) by striking out, in the second recital clause, the words "the most common neurological disorder" and substituting therefore the words "one of the most common neurological disorders."

My second point, Mr. Speaker: (b) by striking out the sixth recital clause altogether; (c) by striking out the seventh recital clause and substituting therefore the words "WHEREAS schools require appropriate resources to meet the needs of students with autism"; and (d) by striking out the resolution clause and substituting therefore the following: "THEREFORE BE IT RESOLVED that this House calls on government to work with the Autism Society of Newfoundland and Labrador, the Regional Health Authorities, School Boards and with individuals and families touched by autism to enhance the quality of life of persons with autism through progressive improvements to programs and services."

Mr. Speaker, my final comment, with a moment of leave, is that I believe if this amendment is adopted the House gives us the direction, gives me the direction as a minister to immediately engage in this consultation process with professionals and with parents to seek their input on what we can do to improve what we currently have and make it better for families and for children, recognizing, Mr. Speaker, that part of what may come out of that is that we need to extend ABA and the principles of ABA in the K-12 system but it allows us to talk about other things without carte blanche adopting ABA as the one and only solution to the problem.

Thank you.

SOME HON. MEMBERS: Hear, hear!

MR. SPEAKER: Order, please!

The House will take a brief recess so that the Chair can consult with the Table and make a determination on the amendment as to whether or not it is in order.

Recess

MR. SPEAKER: Order, please!

The Chair has reviewed the amendment that is put forward by the hon. Minister of Education and deems the amendment to be in order.

The hon. the Member for Port de Grave.

MR. BUTLER: Thank you very much, Mr. Speaker.

It is pleasure to be able to stand today and make a few comments with regard to the Private Member’s Motion which was put forward by the Member for Cartwright-L’Anse au Clair.

I am not going to read all the Whereases, but there are just a couple I do want to touch on. It says, "WHEREAS the number of people receiving a diagnosis of autism is on the increase in Newfoundland and Labrador; AND WHEREAS evidence based research shows that the lifetime costs of assisting a person with autism can be reduced if the child receives early diagnosis, effective treatment and adequate supports."

I understand, Mr. Speaker, there was an amendment put forward which I have not had a chance to read yet, so I will just proceed with the comments that I have with regards to this particular Private Member’s Motion.

I know that the minister made some statements with regard to how families feel throughout the Province, and before I finish that is where I am going to, I guess, make my comments, with regard to families that I know in my particular area of the Province and in general.

We all know, Mr. Speaker, that autism is a social and behavioural neurological disorder that affects overall human development. I guess, the first time that it was defined was some sixty years ago by Leo Kanner, and it has only been in the last decade that public interest in this developmental disorder has so drastically increased. I am sure each and every one of us can stand in this hon. House and relate to different issues with regard to this disorder.

It is also staggering to know what the rates of diagnosis of autism in Canada and Newfoundland are, as we speak. In 2006, we had about seventy-four children diagnosed. Those numbers jumped to 114 in 2007. Mr. Speaker, currently we know that the numbers for 2007 were one in one hundred and thirty-two, and the majority of these cases were with boys. We are still waiting for the numbers for 2008 to be released, but we are told that they will be even higher than what they were in 2007.

Mr. Speaker, I have been informed that the area where I live, Conception Bay North – I understand that Trinity and the Conception Bay North area is one of the highest areas of our Province where autism is taking place today.

We hear from Dr. Bridget Fernandez at the Janeway that there is a genetic component to the disorder as there are some twenty genes identified in children with autism, but she also admits there is an environmental factor that is unknown. When you know that there are certain areas where the percentage of individuals, young people, diagnosed with autism – and we do not know because, like she said, the factor is unknown. There could be environmental issues. I guess it says something, because, as a government and as individuals in this Province, that is something we should put our attention to, to see what is actually happening in some areas. It could be an industry, that is something we do not know, or whatever factors could be playing a role there.

Mr. Speaker, when the hon. the Member for Cartwright-L’Anse au Clair made her comments, she mentioned about the seventeen-month time delay from the time the parents are referred to a psychologist to the time a child is diagnosed. We all know, from time to time in our Province there are various issues when it comes to our health care system, but those seventeen months, or pretty close to two years, are very crucial to those young people because we know that from a very early age much can be done to assist them.

We know that services are available here in our Province today. At the present time, children diagnosed with autism, up to the age of six, receive the following services: applied behavioural analysis; speech pathology services; and occupational therapy. When it comes to this, Mr. Speaker, an intensive social learning and behavioural modification therapy takes place; therapy to assist in the development of communication skills, whether speech or picture recognition, and then we have the occupational therapy, help with whether it is tying your shoelaces, doing up buttons, holding a pencil, throwing a ball, all various occupations of children.

However, at the present time, once a child turns the age of seven all these services are cut off, and that is really what this private member’s motion is all about. We have heard today of incidents, we have received letters from various individuals, knowing that once those services are cut off what the cost will be to a parent. We know that it is approximately $12,000 a year they will have to provide.

Mr. Speaker, some of the concerns have been expressed by various families: one individual, a parent of a seven-year-old with autism, is hoping that something will be done at this present time to put more funding into extending the services beyond the age of six. They say for sure that they know what families are going through. The minister mentioned in his own particular family, the difficulties families and parents go through.

Another individual wrote that: We were told by the school – and I have to say, knowing this first-hand, issues that happen at the school level are supported by the school board, but in this particular case that was exactly what was being said. When the issue was brought forward at the school level they were supported by the school board, however, they were advised that the Department of Education is not accepting any new applications for support services within this program. As a matter of fact, they thought that some of the services, as they knew them at that particular time, would be taken away.

Mr. Speaker, other people go on to say, that we need funding for this early intervention, for the general population. In turn it will save government huge dollars and rescue a number of children from this epidemic. Mr. Speaker, the list goes on and on. Another individual wrote what it will cost them.

Mr. Speaker, with regard to my last few comments with regard to this very serious issue, I know in my area I had an incident, maybe three years ago, where it came to the point that the family knew that once their child became age six or over age six the services that could be provided to them in that particular area were definitely going to be downgraded and the funding would not be there. That family moved here to St. John’s to live even though there was no funding for them after he passed age six. They felt that they were in an area where more services and more opportunity could be provided to that family.

I had another individual who, when they applied for funding, when the services were – not that the services were cut off, but what was being paid for up to the age of six. They did an assessment to see if government would be able to provide any financial support to them to help with this service provided to their child. When the financial assistance was carried out, when the paper work was done, they replied back to them that: We understand. They were not wealthy people but they had an RRSP that they were trying to build, not only for the child but for themselves in the future. They were told that you have to use every penny that you have in your RRSP to provide continued service to your child after the age of six.

There was another case back a few years ago, Mr. Speaker, when they entered school and the family went through a tremendous time knowing that there were some services there but really the services were not available – what were expected and what were needed – to help that particular child when they went into the school situation.

Some of the people are saying that they believe – and I understand where the minister is coming from. He referenced one particular area of this problem, and that maybe there should be an overall review. No doubt, I guess the association and others will be very pleased to hear that, as long as it is not a review that will be put together and then tabled and just forgotten about in the future.

Mr. Speaker, this is a very serious situation and I hope that government, in their wisdom, will be able to look at the main motion. I know there is an amendment there, and that will be dealt with shortly, but really the people are asking for support for their children even beyond the age of six. Some of them are asking, and they feel that this should continue on at least to the high school level because they do need the supports.

The families, I believe, are crying out for help. Hopefully, through this private member’s motion today, whether the main motion is accepted in its entirety or along with the amendment, at least I believe that something will be done to help those families to carry on with their lives and to do whatever is best for those young children who are involved with this disorder.

Thank you, Mr. Speaker.

SOME HON. MEMBERS: Hear, hear!

MR. SPEAKER: The hon. the Minister of Health and Community Services.

SOME HON. MEMBERS: Hear, hear!

MR. WISEMAN: Thank you, Mr. Speaker.

I want to make a couple of comments around the resolution itself, and then I will make some comments with respect to the amendment proposed by my colleague.

I think one of the things we want to make sure is that people fully understand and appreciate, the comments made by the Member for Port de Grave, for example, a few moments ago, talking about the incidents and the diagnoses that have occurred in the last number of years, and the increase in incidents, let me just reinforce that view.

I am looking at some data here that suggests that back in 2002 there were twenty-five newly diagnosed cases during that particular year, and that has continued to increase progressively over the period of time from that point in time up to this year. We have had years where there have been forty-two and seventy people, seventy-six people. The year before last there were a little over a hundred people diagnosed. Last year there were some forty-four people.

So, Mr. Speaker, there is no question at all, and the statistics that have been cited and speaking to the resolution are very clear. There has been an increased incidence and the diagnosis is on the increase, and I suspect there are a number of reasons that might be. One of which, obviously, is that we are becoming much better at early identification. Obviously, the earlier you are able to identify a disorder, and the earlier you would be able to provide intervention, the greater the chances of success, and support being brought to bear early makes a major difference in the lives of those individuals who are impacted.

Mr. Speaker, I want to make sure that there is a clear understanding, with respect to our recognition as a government of the need to support children with autism, that is without question. The issue of recognition that we need to examine the kinds of supports and programs that we provide to children of autism, and the supports that we provide to the families are critical – critical response and the critical responsibility that the government has.

I think, through my colleague and the amendment being proposed, it is not at all to take away from the thrust of the comments with respect to the significance and the impact that autism has on individuals and their families.

I think one of the things that become really important, Mr. Speaker – and we have learned this is a variety of areas – as the motion would suggest, it is a very prescriptive motion and it may or may not be an appropriate response for everybody who is living with autism, or an appropriate response for their families.

So I want to speak, if I could, to the proposed amendment to the resolution, and I think it is an important point. Let me just take a moment to read it. It says, "THEREFORE BE IT RESOLVED that this House calls on government to work with…" – to work with is the operative word – "…the Autism Society of Newfoundland and Labrador, the Regional Health Authorities, School Boards and with individuals and families touched by autism to enhance the quality of life of persons with autism through progressive improvements to programs and services."

We have found, many times throughout government – and let’s use by way of example. As the Minister of Health and Community Services, I am also the minister responsible for aging and seniors. A couple of years ago I had the privilege of leading a Province-wide public consultation where we travelled to some seventeen communities and spoke to over 1,000 people around aging issues in the Province. It was a very valuable exercise because we heard from organizations who were involved in supporting seniors. We heard from individuals themselves who are supporting family members who are seniors. We heard from seniors themselves, and we heard from community leaders, so we had a fairly broad cross-section of people come to our consultations and I think we were enriched by that process, Mr. Speaker.

We were enriched because we had a broader understanding of the issues facing an aging population in Newfoundland and Labrador. As a result of that broad consultation, as a result of that significant input from a variety of people, we were able to put together a Healthy Aging Framework, and launch it in 2007, that has guided us in the investments and initiatives of government over the last two years.

I think, Mr. Speaker, there will always be times when people will want to make further enhancements, further improvements, or there might be criticisms of not doing enough or doing it too slow, but I think what is really important, though, is that you engage the community, you engage the people who are affected by it, you engage the people who better understand the issue sometimes than most of us who sit in this Assembly here.

That is why I think this proposed amendment to this motion is a critical piece to help guide us to ensure that we have a successful outcome. There is no mistake here, Mr. Speaker; all of us, every single person who sits in this Assembly today, and the people of Newfoundland and Labrador, all understand the need to continuously try and improve the services that we provide. In this particular case we are talking about people who are living with autism, talking about their families and the support that they need. No one at all, Mr. Speaker, would ever suggest that as a government, as a society, we should not be responsive to the changing needs of our society, the changing needs of individuals, in this case with autism, but we need to do it right, Mr. Speaker. We need to be certain that what we are doing, we are making informed decisions, and we are involving those people who are actively engaged.

Several years back, as a provincial government, there was about $40,000 a year being provided to the Autism Society. As a result of some discussions with the society, talking about programming that they provide and the supports that they need, we are providing a $325,000-a-year grant to the society so they can continue to do that work that they do on behalf of the people with autism in this Province and their families.

Mr. Speaker, let there be no doubt, let there be no doubt at all, that as a government we are keenly interested in building on the services we now have. We recognize, and the member opposite pointed out, the wait times for assessments. We recognize that today, for example, we have had some staff turnover, and as a result of that staff turnover there have been some delays in the recent past. When we get the staff who we just recently recruited gone through some training programs they will be back on track with the full complement that we enjoyed several months ago.

There will be times in the delivery of programs and services that you will have interruptions, you will have some delays. That may happen periodically because of some human resource challenges, but, Mr. Speaker, always it is our intention as a government, it has always been our intention as a government, and that is what will guide us in the future. Our interest is what is in the best interest of the people of Newfoundland and Labrador and we respond to the changing needs of various sectors of our society, various sectors of our communities but when we respond we want to make sure that we are making the right decision, it is evidence-based decision making. What this proposed amendment – and I say to the members of the House that I will be supporting the proposed amendment because I believe it reflects a process that is appropriate for us to guide us as we move forward. To stand in this House today, or to sit in this House as a group of individual members and to support a resolution that is very prescriptive and may or may not do what the intention of the mover would have been.

I think in all seriousness and in all fairness to the member opposite who moved the motion, it was her intent and it was her party’s intent, I am certain, to ensure that she in fact at the end of the day, the result of a motion such as this would see some improvements in the services being provided to children with autism and supports to their families. The intention, I am certain, was to ensure that what we did as a government was the right thing but I think, Mr. Speaker, what we want to try to do is to better understand – there are many theories, many views, many thoughts. There is one consistent view, though, Mr. Speaker, and that is that there is a need to improve services, and I will not argue that point.

The point being raised in this House today for us to debate and the substance of the motion and the thrust of the motion is to take a particular type of action. So by proposing an amendment, it is not to take away at all from the thrust of the motion, not to take away at all from the intent by the mover, not to take away at all from any of the comments that have been made about the incidence of autism, the significance of it, the impact it has on individuals and families, the challenges these people find as they walk through various stages of their lives, but I say, Mr. Speaker, it is important to do what is right. I believe that the motion as proposed here talks about a consultation process. It talks about engaging people who understand, it talks about engaging families, it talks about engaging communities, the Society for Autism for Newfoundland and Labrador.

So, Mr. Speaker, with that I will conclude my comments, but I do want to reiterate. As a government, we have made a commitment to improving the quality of life for the people who live in Newfoundland and Labrador. That is an inclusive statement to talk about all members of society, and we will continue to build on the programs and services that we provide through Health and Community Services and in this case here, Mr. Speaker, in partnership with our colleagues in Education.

Across government there are many initiatives that we undertake that crosses many department boundaries. In this particular case here I look forward to working very closely with my colleagues in Education as we engage in this consultation process. The lead on the consultation will be the Department of Education. However, officials from my department and myself will be actively involved in the process as well because there is a crossover here between both departments, but also too, the school boards and the regional health authorities will be actively engaged in this process and the outcome, Mr. Speaker, will be clear. We will all, all members of this House, together with government itself, will have a good understanding and a better feeling today, and a better understanding after it is over than we do have today about what might be an appropriate action. When we come back to that, some of the suggestions that are made in the initial motion may be implemented, but we will not know that until that consultation is concluded.

I say, Mr. Speaker, on that note, I conclude my comments and thank you for the opportunity to make my brief remarks.

SOME HON. MEMBERS: Hear, hear!

MR. SPEAKER: The hon. the Member for Signal Hill-Quidi Vidi.

MS MICHAEL: Thank you very much, Mr. Speaker.

I am very pleased to have the opportunity to speak to the motion that is before us on Autism Spectrum Disorders, and the amendment that has been suggested by the Minister of Education.

I have problems with the amendment. I do not have problems with the intent of the amendment. Obviously, I believe that this government should work with the Autism Society of Newfoundland and Labrador. They should already be working with them. I presume that they are, but I do not think it is to a satisfactory degree. Obviously, the House would call upon the government to work with the regional health authorities and the school boards. I am presuming, it does not say it, but I would hope that it is the Department of Education who is also going to be working on this issue as well. The Department of Education is not in the resolution, in the amendment.

Obviously, I believe in consultation, and obviously I believe that especially the Autism Society should be consulted by the different authorities, whether it is the regional health authorities or the school boards, or the Department of Education, and that the individuals and the families who live with autism, either because the individual has ASD or the family that supports the individual. So they all live with ASD in one form or another, in one meaning or another. Everybody wants to improve the quality of life, both for those individuals who are suffering from ASD and also for the families who are living with the individual.

So all of us want everything that is in the amendment, but I think the amendment, personally, waters down the intent or the meaning of the original proposal. What does it mean to say: Through progressive improvements to programs and services? How long are we going to have to wait for government to come up with what that means? We have been over a year now waiting for some action on this issue. Yet, today, what we have before us is an amendment that promises that there will be consultations and that through those consultations we hope to come to a point where there will be an enhancement of the quality of life of persons with autism through progressive improvements to programs and services.

What I am concerned about is that this resolution actually slows down the process. I do not think that consultations, long drawn-out consultations actually have to happen. I think the Autism Society and individual parents and families have spoken loud and clearly with regard to the needs. Everybody recognizes the things that are there that are positive, and I recognize them as well. What government is providing with regard to an early intervention program for young children with the diagnosis of ASD is excellent, and the early intervention program is proving to be very, very successful. It definitely, significantly improves the outcomes for children with ASD and their families; there is no doubt about that.

Under this program, and maybe not everybody watching us today is aware of what the early intervention program involves, but under this program children who are diagnosed with ASD are offered thirty hours a week of home therapy, which is supervised by a senior therapist from Eastern Health. This therapy has really proven itself to be successful. It is the main medical intervention received for children with ASD.

What we have to keep in mind with ASD is that while quality of life can be enhanced, and while depending on what part of the spectrum one may find oneself, one can have a quality of life as one becomes an adult, improved from where one was as a child, but the reality is, a person will always have ASD. It does not go away. It is a lifelong disorder. It is something that is a profound disability, more profound for some than for others. It impacts the life of the person, it impacts the family of the person, it impacts parents, and it impacts siblings. Anybody who has had experience in their family, either in their immediate family or extended family, of somebody who has been diagnosed with ASD and different disorders that fall under autism, such as Asperger’s Syndrome, knows the impact that that disorder has on the individual and on the family.

The situation that we are in right now is that children with ASD receive this early intervention from the time of their diagnosis until they enter Kindergarten. In Kindergarten the therapy is reduced to fifteen hours a week, and at the beginning of Grade 1 that intervention ceases. Children and families who have been used to having this home therapy, while it becomes more limited in Kindergarten they are still used to having this home therapy. Once they start in school the home therapy ends. Now, I do not know what the thinking is around that. I can imagine what the thinking is around it. It is that the school is going to take over, the school situation is going to take over from the home therapy, that the school situation is going to have programs that will make up for the home therapy.

One thing seems clear, from those who studied ASD and those who have done evaluation of early intervention and home therapy programs, that about 50 per cent of the children benefit from that to the degree that they could, in school, not need the home therapy that has been provided up to now, that their disorders are of such a nature that they really benefit very well from the home therapy. There is another 50 per cent of the children who get home therapy who, in actual fact, still need extensive help when they go on into Grade 2. They do not magically, automatically, all of a sudden, not need what they needed before. It is not that they reach a limit, they can improve beyond, but they cannot do it on their own, they need extra help, they need extra support.

What our program right now does not recognize is that there are people, there are families, who do get the extra help that is not available from the system, that is not available from schools and that is not available from the health care system, but the families who do are the families who can afford it. You get a disparity between families who can afford to get the extra help once the child is no longer eligible for the early intervention, because the child is now into Grade 2, that once that happens, those who cannot afford anything else, their child is not going to have as much help as the child whose family can afford it.

You know, I speak personally from this. I do have a nephew who has Asperger’s Syndrome, and he was fortunate enough to live in British Columbia. The interventions that he experienced in his schooling, all the way up to junior high school, were amazing. By the time he got to junior high school, he no longer needed the intense interventions that were there for him all the way along. He went through everything from the home therapy through to having an aid with him all day long, in the beginning, in the classroom with him, through to now being ready to look at university; like another story that was told here today. One, he was in a province that offered help all the way through the school system, and, two, he was in a family who could also afford to get more help if more help was needed.

That is the kind of disparity that we do not want to have. I do not think we want to have it Province-wide, and I do not think we want to have it family-wide, that any child who has ASD, no matter where on the spectrum the child is, should be able to get all the assistance they need.

Studies have shown that an adult with autism who requires full-care group home life, once they become an adult, that it costs the state about $250,000 a year to keep that person in a group home with full care, whereas, if money is put into the system while children with ASD are in school, and we come up front with the programs that are needed – and I am not saying that every single one of the 50 per cent of the children who did not benefit enough from early intervention are going to need the same intensity for the rest of their lives in the schools, but they are going to extra help. If we put the money up front then, we will be saving money down the road, because most likely they will not require to be in a full care home situation, costing the state $250,000. It is money wisely spent for us to put money up front now while the children are in the school system.

Another thing that is happening – and I want to speak to this because I have been speaking to families who have children with ASD – three parents who I have been in touch with today, one of those parents, and I want to speak for them because they cannot be here in this room and speak for themselves, so they are watching. They are watching all of us. One of those parents has a seven-year-old child with an above-average I.Q. who has not been in school at all for most of this year. The school believed that attending school was unsafe for the child, for other children and for staff. This family has been under intense stress because of that decision, because now this family has the sole responsibility for this very disabled child, twenty-four seven. They are the only ones with responsibility for this child and that child has two siblings, so you can imagine what this has meant for that family. Right now, he is currently being transitioned back into school. He is allowed to attend school for forty-five minutes twice a week right now. That child has a really special need and that family should not have to handle that situation on their own.

I spoke to another parent who told me about their eleven-year-old son, again a child with an average I.Q., and that parent said her son was expelled from school for three weeks and since then has slowly begun a transition back to school. He is now allowed to attend a little over three hours a day.

These are some of the situations that are out there. These are the situations that government is going to hear about, if government has not already heard about them. I cannot believe that I would be the only person who is being told these stories. I am sure that my colleague, the Leader of the Official Opposition, in bringing her motion forward today, brought it forward because she, too, has these stories coming to her. We get them from individuals, and we get them from the Autism Society. They are out there. I am positive that some of my colleagues on the government side of the House have to be getting these stories also.

I am sorry about the amendment, because I think we would have assumed there should be consultation anyway, whether or not that word was put into an amendment. I hope this amendment does not do in action what it does in words; because, for me, it waters down. I appreciate the ruling of the Chair. I do not think it changes the total intent of the motion that was put forward. I am not going to speak to it, I did not move it, I did not second it, but I was ready to vote for the motion as it was put forward because I believe that radical action is needed. I believe that those families, two of whom I have just spoken about, and there are more of them out there, they need help, they need assistance. This is not just their responsibility.

I do know, from speaking to these families, that right now the treatments that are out there that are in schools, like some of the programs that the Minister of Education spoke about, the occupational therapy programs are very limited. So I hope that when the minister says that he wants progressive improvements to programs and services, I hope that means immediately, absolutely immediately, and improvements – it is not improvements in the type of programs. I do not think people are complaining about the type of programs; it is that there are inadequate resources to service all of the children who need them. Right now, in my understanding, the latest figures we got from the Department of Education, we have about 400 children in the Province, with 200 of them, approximately, being in the Eastern Region.

Progressive improvements, that means put money in there to take care of these children, but something has to be done about the parents, where their child has to move back and forth from the school to home.

MR. SPEAKER: Order, please!

I remind the hon. member that her speaking time has expired.

MS MICHAEL: If I could just clue up, please, Mr. Speaker?

MR. SPEAKER: Does the hon. member have leave?

SOME HON. MEMBERS: By leave.

MR. SPEAKER: The hon. member, by leave.

MS MICHAEL: Thank you.

We have to worry about not just the child in the system. It is like, with what we have done now, once a child gets into Grade 1 that is it. We do not have to worry about the family any more; we do not have to worry about their home situation any more. What I am saying is that the home and the family, right through, as long as this child is in school, has to be part of the programming that happens.

As I said, I am sorry about the amendment. I will be voting for the resolution and I thank the Speaker.

MR. SPEAKER: The hon. the Leader of the Opposition.

MS JONES: Thank you, Mr. Speaker.

I certainly want to thank all of my colleagues in the House of Assembly today for their input into this particular issue, their insight, and also for their co-operation. I specifically refer to the amendment that was proposed by the Minister of Education. While it is not the swift and quick action that we were asking for in the motion that we tabled, we are satisfied that government’s attention has been drawn to the issue and that they are prepared to work for better solutions.

Mr. Speaker, I just want to point out that the whole reason in bringing this motion to the floor of the House of Assembly today is because it is an issue that has not been dealt with to the satisfaction of families who have children who suffer from autism in this Province. It is because of the very stories that you just heard from my colleague, the Leader of the NDP, and from others who have spoken here today. In fact, I have several pages of stories myself that were told to me by parents of autistic children, about how they were treated in classrooms only because the resources were not there to deal with their illness, to deal with the kind of communication skills that they were lacking.

Mr. Speaker, we do not blame the teachers in the classroom but we do realize and have to accept that we have a system that is not working for all of these children, and we have a responsibility to improve it.

Mr. Speaker, my colleague, the Minister of Education, today proposed that government would, "…work with the Autism Society of Newfoundland and Labrador, the Regional Health Authorities, School Boards and with individuals and families touched by autism to enhance the quality of life of persons with autism through progressive improvements to programs and services."

I am taking that to mean that the Department of Education would be one of the key players involved with this entire process. Mr. Speaker, we do not want to see this pushed over into another study that will take another year or two years to be reported upon. We already have a study right now that was done in the name of the ISSP plan and the Pathways plan, that was done, a very comprehensive piece of work that outlined very specifically that students with exceptionalities in our school system need to be treated, and there are responsibilities on behalf of the government and the Department of Education to ensure that they have the resources in the classroom.

I can stand here for the next fifteen minutes and quote from the recommendations that were in this report about services that were supposed to be improved in schools, and a lot of it has not yet occurred. This report was done now since 2007 and it talked about the fact that student assistants needed to become teacher assistants in the classrooms in order to deal with children like those who suffer from autism, but we do not have a program developed even today in this Province to teach these people how to become student assistants. We do not have any certificate program like they do in other Atlantic Provinces. We do not even make it a requirement in our school system to have that resource for children.

The minister and the government have had that recommendation for two years, telling you that this needed to be done, so don’t think that we are going to be bought off by another report or another study and we are going to go away and let this thing just fade. That is not on.

We will support the amendment that is brought forward, and we will vote for it, but we expect government to act in a timely fashion. On June 3 last year, nearly one year ago, when I raised this issue in the House of Assembly I was told at that time that the government, through the Minister of Education and the Minister of Health, would evaluate and look at options to improve services for these children, and it did not occur. It did not occur.

For example, Mr. Speaker, one of the few recommendations in this report that did get implemented partially was a recommendation around classroom teachers, basically stating that teachers should have to do certain courses, as part of their Education degree, that would deal with autism. Of course, Mr. Speaker, the report recommended that there be two. Right now, from what I understand from Dr. Philpott at Memorial, there is only one program that has been introduced. The other one is actually optional and they do not have to do this course; it is an optional course. So, Mr. Speaker, even that recommendation that was in the report did not get fully endorsed.

It also talks about Special Education teachers, and the fact that Special Education teachers need to have all the appropriate training to deal with all aspects that students with exceptionalities have within the system. In fact, we are learning today that 40 per cent of our teachers that actually work as Special Education teachers in our schools do not hold a Special Education degree. Only 60 per cent of them do, so 40 per cent of them have never received the appropriate training in the first place. Those are things that I think government needs to start looking at immediately.

Mr. Speaker, the other issues are around things like occupational therapy, which the minister did allude to when he spoke this afternoon. Those things need to be provided for children who are in the system. That is the whole reason why we are bringing this forward today. It is not just to deal with ABA, but it is to deal with all the other supports that they need: the supports around speech and language, and around communication skills. Because we all know, and statistics show, the two books that I quoted here today – that were written by the same author that the government has been paying for years to work with these children – are telling us that the program can work in the schools. It just needs to be done. He has even written a book on how it can be done, how it can be a part of the education system. Where it may not work for every single child of autism, it will work for a lot of these children but if it is not available, how can they avail of it?

Mr. Speaker, in this Province today we have seen the number of children with autism increase. In 2006, we had seventy-four children that were diagnosed. These numbers today have jumped to 114 in 2007, and we expect that the statistics for 2008 are once again going to show a rise in those particular numbers. In fact, Mr. Speaker, the demand for service is climbing. It is climbing simply because there are more people out there, more children out there that actually need the service.

In fact, Mr. Speaker, I was going to quote one of the doctors at the Janeway, one of the doctors that have dealt with this particular issue. I was looking for what she had to say because her comments were very insightful, but what she was talking about was that the numbers related to the number of children with autism increasing in the Province is far greater and far higher than any other similar cases that they have been dealing with. I think that those kinds of remarks coming from people that are specialists and authorities in the field is reason enough for government to think that they should act and the time has come to act.

Mr. Speaker, I have received so many e-mails from across this Province. In fact, one e-mail that I received only recently really disturbed me, because it was from a parent of a ten-year-old son who had been diagnosed with autism spectrum disorder, only in November of 2008. They had developed an ISSP program for him in the school system, but they were just told by his school that the Department of Education is not accepting any new applicants for support services and programming. I do not know why that is. If this is supposed to be the solution in dealing with children who face those kinds of challenges in our system, why is there a parent being told today that the service will not be available for his child? Why are they not taking new applications?

Mr. Speaker, the parent went on to tell me that the school has been trying their best, pushing this with the board and the Department of Education, and they have been informed that support services will actually be reduced for this coming year. I do not know why that is. Those are the kinds of things that parents are being told in the system. This is the response that they are being given. I am going to give this to the minister because I think it needs to be looked into. I think there needs to be answers provided to these families when they are being told that the ISSP process is the process for your child, that we are now going to incorporate everybody into the one classroom setting and that services are going to be provided but yet they are being told that it is not available to you. There needs to be a reason. One is not jiving with the other at all.

In fact, Mr. Speaker, in another e-mail I received from a lady on the west coast, she told me that she has a two-year-old and a four-year-old that suffer from autism. In fact, they went on to tell me that they have three cousins, every one of them who have children with autism. She went on to say that in the classroom her children were educated in on the west coast of Newfoundland, they have had an autistic child in that classroom almost throughout every single year of their schooling and they have not been getting the supports.

These are not people who deal, just flimsy dealing with the system. These are individuals who are there every day, who are trying to walk their children through our education system and ensure that they get the best education possible so that they can have the successes as we have heard today from students who are graduating from Memorial with autism and other post-secondary programs but the reality is, not all children get that far.

In fact, Mr. Speaker, I have dealt personally with a case this year of a child who has basically been terminated from school, not allowed back into the school because they do not know how to deal with their behavioural issues, which stems from the fact that they have not had the proper treatments. They have not had the proper communications in their lives in the system to be able to deal with this. So they are abandoned from our system when they are fourteen years old. Is that appropriate? I do not think so. It is a real problem and may not be affecting hundreds and thousands of children in our Province but it is affecting dozens of children, tens, twenties, thirties of our children. In fact today, Mr. Speaker, over 100 of our children. That is an important enough reason to make changes.

I received this e-mail from a father of a boy with autism who, within the next eight months, will no longer be eligible for services through the government with respect to ABA and the other essential programs that he was receiving. They estimate that their cost this year, to ensure that their child continues with these services, will be a minimum of $12,000. How many families can afford that?

The family on the West Coast of Newfoundland who has a two-year-old and a four-year-old does not have the income today. Maybe they will in two years time, afford to spend $25,000 a year on services for their two children, but most of these families cannot afford even the minimum, which is $12,000 to get those treatments and to get that service.

Mr. Speaker, our purpose today in bringing forward this motion was to ensure that certain issues around this are addressed, that children with autism have a place in our school system and they have the supports that they need to be able to study and be able to progress and to be able to be contributing, functional members of society. We all know that once they go without the program, once the government lets go of the hand of that child at six years old, they regress in most cases. That is why by the time they get into further grades in their schools that they have these behavioural problems and they are being expelled from schools and playgrounds and other activities that are going on.

Our purpose today in bringing this motion forward is not to condemn the government for what you are doing, but to ask you to do more, to ask you to not let go of the hand of that child when they reach six years old and enter the classrooms of our schools, but to continue to take them through our system so that they have the opportunities that all other children in our society have. I certainly hope, minister, that your commitment today, and I do not doubt that it is sincere, but I hope your commitment today will be one that we will see progressing in the early days and not a year from now or two years from now. I think we need action sooner than then. So we will be watching to see how government progresses on this issue.

Thank you.

MR. SPEAKER (Fitzgerald): Order, please!

Is the House ready for the question?

Shall the amendment as put forward by the Minister of Education carry?

All those in favour, 'aye'.

SOME HON. MEMBERS: Aye.

MR. SPEAKER: All those against, 'nay'.

The amendment is carried.

On motion, amendment carried.

MR. SPEAKER: Shall the resolution, as amended, carry?

All those in favour, 'aye'.

SOME HON. MEMBERS: Aye.

MR. SPEAKER: All those against, 'nay'.

The motion, as amended, is carried.

On motion, resolution, as amended, carried.

MR. SPEAKER: Being 4:35 p.m. and this being Private Members’ Day, this House now stands adjourned until 1:30 p.m. of the clock, tomorrow being Thursday.

This House is now adjourned.

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