Ontario NDP: McGuinty Government Cutting Children with Autism off IBI (ABA)

Number of Children Awaiting Autism Treatment Balloonslocation: Queen's Parkdate:

October 26, 2009 - 1:00pm

Ontario’s NDP Leader Andrea Horwath is citing more troubling facts concerning the McGuinty government’s approach to treating Ontario children with autism.

“The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish,” Horwath said in the Ontario Legislature today after revealing the government’s latest quarterly numbers for April to June, 2009.Compared to the previous quarter, 1,649 children are now waiting for IBI therapy. That’s 136 more than previously reported (1, 513) and a 9 per cent increase in just three months.

“When will parents see adequate service levels and proper funding for children’s autism treatment?” Horwath demanded of Minister of Children and Youth Services Laurel Broten. “It has been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.”The government is cutting off more children from IBI even though schools are not able to provide the therapy, Horwath said. The latest quarterly statistics from the ministry show another 114 children were abruptly cut off.

“The regular quarterly numbers don’t lie. Why are more children with autism waiting for treatment, and why are more children having their autism suddenly cut off and terminated?” Horwath said. “The McGuinty government’s autism program is not living up to the Premier’s promise of ensuring children with autism receive treatment regardless of their age.”
Horwath, the MPP for Hamilton Centre, recently brought the autism file into her portfolio as Ontario’s NDP Critic for Children and Youth Service.

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From House Hansard 10/26/09. The new Minister of Children and Youth Services has spoken:

AUTISM TREATMENT

Ms. Andrea Horwath: My question is to the Minister of Children and Youth Services. According to her ministry's most recent quarterly numbers, the McGuinty government's autism program is not living up to the Premier's promise of ensuring that children with autism receive treatment regardless of their age. The IBI/ABA numbers for April through June 2009 continue to be troubling. Compared to the previous quarter, 1,649 children are waiting for IBI, 136 more than previously reported, and another 114 children have been abruptly cut off.

Why are more children with autism waiting for treatment, and why are more children having their treatment suddenly cut off and terminated?

1100

Hon. Laurel C. Broten: This is a file where I'm very pleased to be able to build on the work that's been done by our government and a variety of Ministers of Children and Youth Services since we took office in 2003. We've made a lot of progress. Kids are getting the help they need, we've expanded those services, and we're working to make sure that families also have the support they need. We're working to maintain that progress and push ahead, working with parents and experts. Over the last couple of years, we've been examining how we can do better for our kids in Ontario.

I had the opportunity last week to visit Surrey Place and speak directly with the experts and find out how they think we can best help kids in Ontario. There is more work to do-there is always more work to do. We continue to build on the efforts that we've put in place to make sure that Ontario kids get everything they need from our education system and that envelope of services around them.

The Speaker (Hon. Steve Peters): Supplementary?

Ms. Andrea Horwath: It's been six years. These children and these families cannot wait any longer for this government to get its act together when it comes to the autism file.

The regular quarterly numbers don't lie. The government is cutting off more children from IBI when schools are not able to provide the therapy. Instead of funding treatment, the government is allowing waiting lists to balloon and children to languish. When will parents see adequate service levels and proper funding for children's autism treatment?

Hon. Laurel C. Broten: I want to put some key facts on the table. We removed the previous government's age 6 cut-off and more than tripled autism spending, from $44 million to $165 million. We've more than doubled the number of kids getting IBI treatment-more than 1,300 now, up from just over 500 four years ago. We've introduced respite programs that serve almost 7,000 kids. The growing waiting list is not acceptable. That's why we've put more resources into the system.

But I would say that the numbers being brought forward by the leader of the opposition are consistent with numbers that we've seen in the past: 114 kids have completed the services for IBI, and we now have 1,262 kids receiving that service.

We need to get service to more kids. We need to broaden that continuum of support. That's why we're working with world-renowned experts like Peter Szatmari and Nancy Freeman and why we've brought that group of expertise to the table to make sure that kids in our schools get the treatment.

The Speaker (Hon. Steve Peters): Thank you. New question

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Autistic Children Still Languish on Ontario Wait Lists

In Auton and Wynberg Canadian courts ruled, in essence, that autistic children do not have a substantive Constitutional right to effective treatment or education. It is up to government to decide whether autistic children in Canada will have access to evidence based effective treatment for their autism disorders or to a real education.

In Ontario the McGuinty government has demonstrated what happens when treatment and education are left to the whims of government. Five years after the Supreme Court of Canada decision in Auton many autistic children in Ontario still languish on waiting lists for IBI(ABA) treatment. Schools in Ontario are still toying with pilot programs and do not provide ABA based education for most autistic children.

The story of autistic children in Ontario is one that has been told throughout the ages - the weak, the vulnerable, and their families, must fend for themselves.

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NDP Leader Jack Layton's Response On Autism

The following document was forwarded by members of Medicare For Autism Now who received it from the New Democratic Party on behalf of NDP leader Jack Layton:

Jack's Response on Autism

First, both NDP MP Peter Stoffer and myself have challenged the federal government for not providing funding in its last budget to help families with autistic children. I fully recognize that families with autistic children are in crying need of support and they are very disappointed that the Conservative government has ignored their needs in their budget spending.

On the matter of voting, in the April 3, 2006 to September 14 ,2007 session of parliament MP Shawn Murphy introduced his private members legislation Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act. C-304 received first reading on May 17, 2006 but unfortunately it did not make it to third reading or a final vote because it died when the Harper government chose to prorogue that Parliament. I am also aware that on March 29, 2007, the Standing Senate Committee on Social Affairs issued a report on the Funding of Treatment for Autism titled:" Pay Now or Pay Later: Autism Families in Crisis" in which they recommended that the federal government demonstrate some leadership in the autism file by collaborating with the provinces to create a National Autism Strategy and address the funding of treatment. However, this report was not put before parliament for a vote.

New Democrats recognize that providing support for families with Autistic children has to be a bigger priority for the federal government than another corporate tax cut. That is why Peter Stoffer has introduced Private Members' Bills, C-211, An Act to amend the Canada Health Act (Autism Spectrum Disorder) to "ensure that the cost of Applied Behavioural Analysis ( ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care Insurance plan of every province" and C -212, An Act respecting a Canadian Autism Day. ' The federal NDP is proud of Mr Stoffer's efforts to help put the needs of Autistic children on the political map.

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Canadian Autism Spectrum Disorder Online Petition

To all Canadians, if you have not already done so, I urge you to visit and sign the Autism Spectrum Disorders Online petition at:

http://www.petitiononline.com/andap1/

You will need a Canadian address, including postal code, in order to sign the petition. The petition states:

"Autism Spectrum Disorder (ASD)"

To: Canadian Parliament (House of Commons)

PETITION: TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED

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

Whereas children suffering from an Autism Spectrum Disorder (ASD) are among the weakest and most vulnerable sector of Canadian society;

and whereas, in Canada the rate of children being diagnosed with ASD is high and increasing at an alarming rate (currently approximately 1 child in 195);

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

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

Therefore, your petitioners call upon Parliament to

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

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

Sincerely,

I signed the petition yesterday (signature #6287). This is a quick easy way to remind our federal politicians that the health care that is so important for all Canadians should include autistic Canadians and treatment for Autism Spectrum Disorders.

Harold L Doherty

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Ontario Failing Autistic Children - Canada Needs Medicare for Autism NOW

More proof that Canada needs Medicare coverage for Autism NOW can be found in the CP/Globe & Mail article Agencies decry Ontario's funding of child autism treatment by Maria Babbage. From Northern Ontario to Toronto and London non-profit agencies are underfunded and forced to cut services. Autistic children are losing out. Children are continuing to wait for a place on the lists to receive treatment:

Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.

“We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs,” Ms. Sayer said.

“We're worried about her whole future and what's going to happen to her in the end.”

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Autism Hunger Strike - Canadian Press Report

Canadian Press has reported on the Autism Hunger Strike being carried on by Stefan Marinoiu outside Queen's Park in Toronto. Stefan has done an incredible job, once again, in bringing public attention to the needs of autistic children in Ontario. He has a press conference scheduled for tomorrow morning. People should get out and support Stefan tomorrow.

I don't know if my advice will be heeded but I hope Stefan has a time line in mind to bring this Hunger Strike to an end. Autistic children in Canada need a strong advocate like Stefan but they need him, more than his memory, to help them.

CP : TORONTO — A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.

He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.

Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.

Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.

She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.


On another note, I have trouble understanding this great debate in Ontario about IBI versus ABA as those expressions are used by Education Minister Wynne and others, including parents, in Ontario. Intensive Behavioral Intervention IS ABA. It just refers, to the intensity - the number of hours per week of intervention. If it is provided to children between two and five it is typically referred to as Early Intensive Behavioral Intervention. But it still remains ABA. See Autism and ABA EIBI Saves Up to $2,500,000 SUMMARY: Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism John W. Jacobson,James A. Mulick,and Gina GreenIn Behavioral Interventions, 1998, Volume 13, 201-226 :

" Early Intensive Behavioral Intervention (EIBI)

Studies have demonstrated that intensive early intervention using the principles and methods of applied behavior analysis (ABA) can produce substantial benefits for many children with autism/PDD (Anderson et al., 1987; Birnbrauer & Leach, 1993; Fenske et al., 1985; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Although there were some variations in procedures across studies, the interventions generally met the five criteria listed as essential by Guralnick (1998) and Ramey and Ramey (1998).

The interventions:

1. emphasized skill development through positive reinforcement;
2. started with an assessment of each child's current skills and deficits; instructional objectives, teaching methods, pacing, skill sequences, and reinforcers were all customized to the characteristics and needs of each child;
3. addressed all skill domains;
4. used frequent direct observation and measurement of individual performance to determine if progress was occurring, and adjust instructional methods accordingly;
5. included parents as co-therapists; and
6. were directed and supervised by individuals with postgraduate training in behavior analysis plus extensive hands-on experience in providing ABA intervention to young children with autism."
   

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Autism Class Action Lawsuit - Ontario Court of Appeal

Autism Class Action Lawsuit

at the Court of Appeal for Ontario

(Appeal hearing on a preliminary motion)

A crucial day in court that will determine whether

we will be allowed to continue the fight for full and timely access

to ABA/IBI intervention and in the schools

Monday February 11, 2008

at 10:30am

130 Queen Street West, Toronto

(at University Avenue , just west of City Hall)

Please join us to show your support for the families

For more information, please contact: t.sagharian@sympatico.ca

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Backgrounder

Autism Class Action Lawsuit (Sagharian)

In 2004, five families representing six children with autism filed a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund ABA/IBI (Applied Behaviour Analysis/Intensive Behavioural Intervention) in the education system or without excessive and detrimental delays.

The plaintiffs have spent their savings, mortgaged and down-sized their homes, borrowed money and taken extra jobs to fund the services that their children require. They have had to make tough decisions about which services to access when they could not get both.

The case highlights key short-comings of services to children with autism. The families are suing the government and school boards for forcing the families of children with autism to make the impossible choice between the specialized services that help children with autism develop, and their right to a public school education. The families are also challenging the extensive waitlists for the AIP (Autism Intervention Program). The families want to ensure better access to publicly funded and quality services for children with autism in Ontario . They seek a change to the current approach to autism services, as well as compensation for the expenses that they have incurred as a result of the government and school boards’ past errors.

In 2006, the government and school boards brought a motion to strike the plaintiffs’ claim, and in March of 2007 a judge of the Superior Court of Justice, Mr. Justice Maurice Cullity, did strike portions of the claim. In response, the plaintiffs have appealed this decision to the Court of Appeal, with the hearing scheduled for February 11, 2008 at 10:30am.

In the aforementioned motion to strike, the government and school boards went after these families for $85,000 in legal costs. Fortunately for the families, Justice Cullity ruled in June 2007 that they should not have to pay these costs because they were raising an important public interest issue. In his decision, he stated:

"The public interest was involved not merely because this was Charter litigation but also because the community as a whole has a legitimate concern and interest in the welfare of disadvantaged children who are particularly vulnerable members of Canadian society.... It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of the lack of public funding for the programs they consider to be necessary for the educational and social development of their children. The fact that the Crown has now accepted a number of their contentions illustrates the value of this kind of public interest litigation and... the objectives of behavioural modification and access to justice are, I believe, sufficiently engaged to bear on the question of costs."

Autism Program in Ontario

In 1999, the province of Ontario, initially through the Ministry of Community and Social Services and now through the Ministry of Children and Youth Services, introduced the Intensive Early Intervention Program for Children with Autism (the “IEIP”, renamed the Autism Intervention Program "AIP" in August 2006) to provide services to children with autism. Initially, the program was only available to children under the age of six.

Both an Ontario Ombudsman report released in April 2004 and the report of the Office of the Provincial Auditor for Ontario in November 2004 identified several significant problems with the administration of the IEIP, including the difference between what it pays to the families and the actual cost of the treatment.

When Justice Kitely ruled in Wynberg/Deskin that the IEIP age cut-off violated the Charter’s equality guarantee under section 15(1), the government suspended the age cut-off (as of April 2005). This decision was over-turned by the Court of Appeal. Nevertheless, the IEIP/AIP has operated without discriminating based on age since Justice Kitely’s decision.

Unfortunately, the IEIP/AIP has long had a considerable waitlist that continues to result in eligible children not receiving necessary services. When the age cut-off existed, the waitlist was already so long that children would become ineligible for the program based on their age before ever receiving services. Since the elimination of the age six criterion for cut-off, the waitlists have become much lengthier, with the result that children with autism continue to be effectively denied necessary care.

The province spends millions of dollars every year on special education. In Ontario , all other children who require therapeutic or medical services are able to access services in a harmonized fashion alongside or with their education. However, when children with autism reach school age, they must either, enter a public school system that does not provide adequate education or support, where they will inevitably fail to improve and may regress, or enrol in a private program at considerable expense to their families and without the benefit of an integrated classroom setting. In contrast, children with autism in the United States are able to access ABA/IBI through the education system until the age of 21, and have been doing so for over 15 years.

Following the February 2007 recommendation in the Report of the Ministers’ Autism Spectrum Disorder Reference Group, Education Minister Kathleen Wynne announced that the Ministry would be directing school boards to provide ABA in their schools. This was an acknowledgment by the Minister that ABA was not previously being provided in school, that it could be, and that it should be. However, in a memo to school boards shortly afterwards, the Ministry indicated that ABA was already being used in some schools and that it would not be directing the use of IBI.

Then during the election campaign in the fall of 2007, the Liberal Party included in its party platform document the following promise:

“Helping more students with autism by providing $10 million to prepare schools to deliver IBI therapy on-site for the first time, a step forward made possible by our earlier decision to scrap the age-six limit for children with autism.”

Previous Autism Litigation in Canada

Auton: In 1998, families in British Columbia filed a lawsuit arguing that ABA is a medically necessary treatment and should be covered through the health care system. Although this case succeeded in the two lower courts in BC, it lost at the Supreme Court of Canada . The Supreme Court stated that the government did not have to provide ABA as ABA professionals are not registered health care practitioners and ABA is not delivered in a health care setting such as a hospital. Under provincial health care legislation, ABA could only be included as an add-on health service, in which case it would be at the discretion of the province as to how much to fund, which children would receive funding, and whether the province would fund the service at all.

Wynberg/Deskin: In Ontario, the Deskin case was filed in 1999 by a single plaintiff. This was followed by the Wynberg case filed in 2000, which eventually included 28 families. The cases were against the Ministries of Health, Education, and Social Services and were based on the Auton case. The families challenged the age cut-off in the IEIP as discriminating based on age and disability. They argued that the government acted negligently in the design and implementation of the IEIP. They also argued that the government breached their rights to life, liberty and security of the person by denying their children the benefit of an education.

When the 2004 Supreme Court decision in Auton was released, the Ontario cases had to reframe their claims, removing health and refocusing on ABA as an education issue. The Court allowed them to refocus their case, but prevented them from bringing evidence in support of this change in focus.

The Wynberg and Deskin cases succeeded at the trial court but then lost at the Ontario Court of Appeal. In denying their claims, the Court of Appeal specifically noted that it lacked significant evidence relevant to the case, including evidence related to ABA and education. It also stated that it was unfair for the comparatively small group of families participating in the case to get compensation while other families of children with autism languished. The trial judge, Justice Kitely, noted that the government had indicated that the school boards were the proper defendants to the claim and should have been a party. The families sought and were denied leave to appeal to the Supreme Court of Canada .

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