DAWN Ontario: DisAbled Women's Network Ontario

Autism Fact Sheet

Friends of Children with Autism (FOCA)

August 2006

 

"If a child can't learn in the way that we teach,
then we must teach in a way he can learn."

~ Ivar Lovaas, Ph.D.


Facts about AUTISM

 

Autism is now a National Epidemic

  • Less than 20 years ago the prevalence of autism was 2 to 5 in 10,000 births.

  • 1 out of 165 babies born today will receive the diagnosis of autism spectrum disorder.

  • Number of diagnoses for children under 5 has increased 150% over the last 6 years.

  • Autism diagnoses continue to increase at a rate of 10 to 17 percent each year.

  • Autism treatment specifically ABA/IBI is one of the few medical treatments that derive a cost savings to taxpayers.

 

Misconceptions in Ontario Being Presented to the Public


Ontario's Position

FACT
‘ABA is an emerging
treatment for autism.’


ABA/IBI has over 30 years of empirical research
Justice Kiteley’s findings of fact March 30, 2005:
(C) Is ABA/IBI an Emergent Therapy or Treatment?
[332] I find that ABA/IBI is not emergent either for pre-school or for school-aged children. It is nationally and internationally regarded as an effective intervention for children with autism.

The Court of Appeal said;
“The government has
no legal obligation
to fund intensive
behavioural intervention
(ABA/IBI) for children
age six and up.
As compelling as that
may be on moral or
policy grounds.
That remains the
terrain of legislators.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 


House of Commons, Hansard, Tuesday, June 7, 2005.

MP Mr. Peter Stockwell Day (Okanagan—Coquihalla, CPC):
The agonizing reality is that the Court has agreed with the
government stating that governments should not have to help
families pay for the expensive cost of this remarkable therapy.
Courts and governments can be technically right on an issue from
a legal point of view but tragically wrong from a human point of
view. I am asking all MPs from all parties to join in efforts to find
solutions for the Canadian families of autistic children. They are
truly special children.

MP Peter Stoffer tabled Bill C-459 on November 28, 2005
An act to ensure that the cost of ABA and IBI for autistic persons is
covered by the health care insurance plan of every province. This
bill was re-introduced in April 2006 as Bill C-211 and is currently in
line for debate in the House of Commons.
Contact your federal MP and ask them to support Bill C-211.

MP Andy Scott - Private Members Motion (M-172)
The purpose of this motion is to create a National Autism Strategy.
Contact your federal MP and ask them to support Motion M-172

MP Shawn Murphy - Parliament Hill Media release: May 18, 2006
"Parents of autistic children have been fighting for years to have
their children treated equally under the Canada Health Act. It is
imperative that our laws recognize the importance of these
treatments. Under current laws, coverage varies from province to
province. Only Alberta offers full coverage and most provinces
offer little or none at all. This is a struggle that has been going on
for decades."

MP Shawn Murphy 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, would
include ABA and IBI among medically necessary treatments under
the Canada Health Act. Contact your federal MP and ask them to
support Bill C-211.

Dalton McGuinty said in writing Sept 17, 2003:
“Among some of the most vulnerable members of our society,
these children need -- and deserve -- our help and support. And,
like other children, they deserve every opportunity for future
success. Sadly, as you and many other Ontario families are
experiencing first-hand, far too few autistic children in our province
are getting the help and support they so desperately need. I also
believe that the lack of government-funded IBI treatment for
autistic children over six is unfair and discriminatory. The Ontario
Liberals support extending autism treatment beyond the age of
six.”

FACT: Dalton McGuinty fought harder in court upon his election.

“ABA/IBI is too costly
for the government
and taxpayers will be
stuck with the tab.”

 

 

 

 

 

 

 

 

 

 

 

 


The Cost-Effectiveness of Expanding Intensive Behavioural
Intervention to All Autistic Children in Ontario.

Sanober S. Motiwala, Shamali Gupta, Meredith B. Lilly, Wendy J. Ungar, Peter C. Coyte Department of Health Policy, Management and Evaluation University of Toronto, ON Vol.1 No.2, 2006

  • The increased awareness of IBI and its high program cost have
    made the financing of IBI and its cost-effectiveness relevant
    concerns for governments.
  • The cost of expanding IBI to all autistic individuals (ages 2 to 5) is
    small (less than 10% of total costs) compared to the significant cost of educating and supporting semi- and very dependent individuals over their lifetime.

Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism
Jacobson, J.W., Mulick, J.A., & Green, G. (1998), General model and single state case. Behavioural Interventions, Volume 13, 201-226.

  • Research has shown that without effective intervention, most
    people with autism and other pervasive developmental disorders
    (PDD) require lifelong specialized educational, family, and adult
    services, at a total cost that is estimated at upwards of $4 million per person.
  • The overall average savings are estimated to range from well over
    $1 million to over $2 million per individual across their life span.

Dr. Sheila Laredo: “There are almost no interventions that we
provide as doctors that actually save money, ABA does.

Justice Kiteley’s findings of fact March 30, 2005:
[126] The Ont government approved IBI based on; U.S. research
indicated the cost avoidance of providing specialized services to
age 45 is $1.3 million per person and that MCSS's early estimates
supported this level of savings for Ontario.

“Only young children
between the ages 2 to 6
provide substantial &
measurable gains
from ABA. ”

 

 

 

 

 


Children, teenagers and adults diagnosed with autism benefit from
an ABA treatment intervention. Research does show that early
diagnosis and immediate intervention using Applied Behavioural
Analysis (ABA) provide for the child's best possible outcome.

But no research states that children stop benefiting at any particular
age, it's never too late to benefit from treatment.

FACT: Children in Ontario who have retained IBI treatment have
accomplished the following after their 6th Birthday: learned to speak,
learned to read, learned to write, learned personal care, learned
safety rules, learned how to sustain a reciprocal friendship and
acquired independence.

Nowhere in Canada would we find treatment for any medical
disorder being terminated for someone based on age, particularly
when they are children.

Justice Kiteley’s findings of fact March 30, 2005:
[849] the universal stoppage of IBI/ABA at a pre-determined age is
harmful.

“IBI in Ontario
currently only provides treatment for children
on the severe end of the
autism spectrum disorder.”

 

 

 

 

ABA has proven to be highly effective for children with autism at all
levels of severity. The critical measure of success is improvement.

The Auditor General’s report [November 4, 2004]
[Page 21 of the report]
We were advised by staff at some of the (regional) service providers
we visited that the Program would be most successful with young
children having a mild to moderate level of autism even though
eligibility for program services is restricted to children at the more
severe end of the autism spectrum disorder continuum.

Dalton McGuinty said in writing Sept 17, 2003:
“We are not at all confident that the Harris-Eves Conservatives care
to devise any innovative solution for autistic children over six --
especially those with best outcome possibilities that might
potentially be helped within the school system with specially trained
EA’s.

FACT: Dalton McGuinty fought harder in court upon his election.

“As children start to
learn incidentally they
no longer require treatment.”

 

 

 

 

 

 

 


At the entry level, children with autism learn best through repeated
practice to acquire targeted skills. As treatment continues, children
become increasingly more capable of incidental and observational
learning in natural contexts. That is the goal of all ABA programs but
it is still a step in the process of making fundamental gains. If a
child’s ABA treatment is withdrawn prematurely they can lose
further gains and will likely regress.

Research: "A comparison of intensive behavior analytic and
eclectic treatments for young children with autism,"

Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H.
(2005. Research in Developmental Disabilities, 26, 359-383)

  • 14 months of IBI was not enough for the children to make up all of
    the differences between their skills and those of typically developing peers. At least 1-2 additional years will be required before some of those children will have the repertoires required to learn effectively in typical classrooms without ongoing specialized intervention; some will require more than that.
  • Projections based on the developmental trajectories produced in
    our study suggest that most children will continue to make progress toward catching up with their typically developing peers if they continue receiving competently delivered IBI.

The Government
of Ontario says,
“We only have so
much money to go
around.
As it is, we have
a wait list for the
2 – 5 yrs olds.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


The funding provided for the IBI has been sufficent to not have a
wait list. The inefficiency of how the government has spent the funds
has created the wait lists.
Fact: Ontario provides two delivery models for ABA/IBI.
The government can deliver the services referred to as the DSO.
Parents retain professionals and are reimbursed for their costs
referred to as the DFO.

The Auditor General’s Report [November 4, 2004]
revealed the following comparative: DSO vs. DFO Costs

[Page 13 of the report]
The Governments Direct Service Option (DSO)
$48 to $92 thousand per year providing 23 hours weekly
Costs per hour between $82.00 to $136.00 (averages at $109.)
Comparative to:
Parents hiring professionals, the Direct Funding Option (DFO)
$21 to $36 thousand per year providing 25 hrs weekly
Cost per hour between $22.00 to $32.00 (averages at $27.)

The Auditor General’s report [November 4, 2004]
[Page 12 of the report]
There was an increase in the number of children in the directservice
option and a corresponding decrease in the number of
children in the direct-funding option. As the direct-service option is
generally the more costly of the two, the increased costs attributable
to this shift would also not result in more children receiving service.

The Auditor General’s report [November 4, 2004]
[Page 19 of the report]

  • A summary of program hours delivered to children in one region in
    the month of April 2004, found that out of 57 children, 38 lost a total
    of 662 hours or an average of 4.4 hours per child per week in the
    DSO.
  • The auditor noted: That regardless of the reasons for lost hours,
    under the direct-service option instructor therapists are paid for their
    time even if they miss sessions with the result that significant costs are being incurred for services not delivered. This is not the case under the direct funding option.

Fact: Calculation of costs for lost hours reported above:
662 hrs x $109. (average hrly cost of DSO) = $72,158. in wasted
dollars in one region for one month.
$72,158. ./. $36,000. = 2 The misplaced dollars for that one month
would fund 2 children on the DFO for an entire year.

The Auditor General’s report [November 4, 2004]
[Page 17 of the report]
Consequently, the direct-funding option is more economical from the
Ministry's financial viewpoint.

The Auditor General’s report [November 4, 2004]
Recommendation #5 [Page 25 of the report]

bullet #1: formally assess the relative advantages and
disadvantages of the direct-service and direct-funding options and
determine whether the current mix of selected options provided
facilitates the delivery of services to the largest number of children;

FOCA Conclusion: Twice as many children could be treated using
the DFO. To date the government has not acted on bullet #1 to
assess the DFO vs. DSO for cost effectiveness in number of
children treated.

The Government
of Ontario says,
“They have doubled
the amount they are
spending on autism
treatment. Ontario is
spending about $112
million on autism
services per year.”

 

 

 

 

 

 


Each year while children sit on the waitlist, the full announced
budget has never been spent. Instead funds committed to the IBI
were clawed back and redirected to OCP: Other Children’s
Programs / UG: University Grants / CRF: Consolidated Revenue
Funds.

The Auditor General’s report [November 4, 2004]
[Page 15 of the report]

  • Auditor General questioned why a portion of the excess funding
    could not have been used to provide direct funding to parents on the
    waiting list. Regional staff advised, that they did not want to create
    a "two-tier" service system. Regional staff also indicated that DFO
    was most suitable for parents who are financially stable, speak
    fluent English, and are capable of finding private sector therapists
    and administering the funding agreement.
Dalton McGuinty said in writing Sept 17, 2003:
“Currently there are only about 500 children in the province
receiving government-funded IBI treatment. It is alarming and
unacceptable that there are almost twice as many on a waiting list.”

FACT: Dalton McGuinty fought harder in court upon his election.

FOCA Conclusion:
Each year there has been a surplus in the
budget that could have provided service to children on the waitlist
using the DFO, yet despite this, parents consistently report not
being able to access the direct funding option.

 

The information in the chart below [CHART A] was taken from the following sources;
Justice Kiteley’s March 30, 2005 decision [287] Page 82.
Updated figures were also retrieved through the Freedom Of Information Act.
FOI documents: CYS2005-0014, CYS2005-0033, CYS2006-0003 and CYS2006-0014
Calculations in the last two columns are provided by FOCA.
Column #6 - Provides the number of children that could have received treatment with the unspent
budget. Figures are based on the current DFO cost of $36,000. yearly.
Column #7 - Provides the number of children that could have received treatment by
applying the full years budget against the DFO model (with an increase to a more realistic
and appropriate amount of 50 thousand yearly)

CHART A

1 2 3 4 5 6 7
YEAR BUDGET EXPENDITURE UNSPENT
BUDGET
CHILDREN ON THE WAITLIST
UNSPENT BUDGET
COULD HAVE
SERVICED THE FOLLOWING
NUMBER OF
CHILDREN
ON CURRENT
DFO OF
$36,000.

ENTIRE BUDGET
COULD HAVE
SERVICED THE
FOLLOWING
NUMBER OF
CHILDREN
ON DFO
INCREASED TO
$50,000.
1999-2000 5 Million .5 M 4.5 M Not collected 125 children 120 children
2000-2001 16 M 15.4 M .6 M Not collected 16 children 320 children
2001-2002 36 M 30.9 M 5.1 M 216 141 children 720 children
2002-2003 42.2 M 37.4 M 4.8 M 76 133 children 844 children
2003-2004 80.4 M 44 M 36.4 M 89 1011 children 1608 children
2004-2005 89.4 M 67.9 M 21.5 M 600 597 children 1788 children
2005-2006 99.4 M Not reported Not reported 753 Not reported 1990 children
Total 72.9 M 1734 2023 children 7370 children

 


Ontario's Position

FACT


The Government of
Ontario says,
“It doesn’t want to
increase the DFO
placements because
it will create a
"two-tier"
service system.”

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



In fact the government is directly accountable for having created this
“two-tier” service as the Direct Funding Option is currently funded at
less than half of what the Direct Service Option is funded per child.

The Auditor General’s report [November 4, 2004]
[Page 17 of the report)
We were also informed that in some regions, the direct-funding
rates were not sufficient to cover the actual hourly rates charged by
therapists and psychologists. As a result, unlike under the directservice
option, parents may incur additional expenditures including,
for example, the cost of resource materials, which private therapists
do not provide.

The Auditor General’s report [November 4, 2004]
[Page 15 of the report]
Service providers also advised that, once excess funds are
committed to the direct-funding option, a service provider would be
limited in expanding its own services under the direct-service option.

The direct-funding option is more economical from the Ministry's
financial viewpoint.

The autism ruling by Dr. Charles E. Pascal –
Former deputy minister of the Premier's Council on Health, Well
Being and Social Justice - The Globe & Mail -July 10, 2006

The often-cited therapy (ABA/IBI) is expensive only because the
professionals who offer it guard it as though it were a highly
specialized idea.

More than 30 years ago, I conducted an experiment at the Montreal
Children's Hospital in which parents, guardians, siblings and others
were taught ABA to provide a more thorough, effective and constant
approach to dealing with the challenges of the autistic child in their
lives. The results were clear. ABA can be easily taught to nonprofessionals.

This is yet another example of the costly and ineffective
consequences of over professionalizing various health-related
interventions. In this case, it results in the unmet needs of
thousands of kids and the unkind rise in frustration for their families.

FOCA Footnote: The lower costing ideal that Dr. Charles E. Pascal
cites is a perfect description of the family directed DFO treatment
programs vs. the ‘made in Ontario’ DSO that utilizes more than
twice the funding. [See cost comparative fact box on page 5]

FOCA Conclusion: Taken from a wide body of research the
national average to run a parent directed ABA/IBI treatment
program is $50,000 a year. To illustrate the cost effectiveness of
DFO funded at the $50,000, the above chart [CHART A]
demonstrates that with the 2006 IBI Budget of $99.5 million, 1990
children could be receiving treatment. The DFO model not only
negates the Ontario wait list but would also serve the children being
deemed as ineligible because they didn’t fall in the severe category.
While the government continues to shield its lion share of the
market building its own ‘Made in Ontario’ model, the cost to the
children is ‘no’ treatment resulting in a lifetime of disability.


“The needs of ASD
children over the age
of 6 will be met
in Special Education?

 

 

 

 



Justice Kiteley’s findings of fact March 30, 2005:


[385] 2003, Annual Report of the Provincial Auditor:
"Neither the school boards...nor the Ministry... had the information
or processes in place to determine whether special education
services were being delivered effectively, efficiently and in
compliance of the requirements."

[409] Dr. Handley-Derry said that most of the children with autism
with whom he dealt were struggling in schools; some were in crisis,
many were marking time rather than making progress".

[515] I find that the defendant (Ministry of Ed) has failed to fulfill its
duty as of October 2002 by reason of: (a) the failure to respond to
the needs of children with autism; (b) specifically, the failure to
develop policy and give direction to the school boards to ensure that
ABA/IBI services are provided to children with autism in schools; (c)
the creation of systemic barriers to children with autism accessing
learning; and (d) the failure to eliminate those known barriers.


“There are other
models besides
ABA that are just
as effective in the
classroom"

 

 

 

 

 

 

 

 

 

 

 


ABA/IBI is the only ameliorative treatment backed by research for
children with autism. In every study, children who received Intensive
Behavioural Intervention improved far more than those who
received either non-intensive behavioural treatment, or an electric
treatment.


Research: "A comparison of intensive behavior analytic and
eclectic treatments for young children with autism,"
Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. (2005. Research in Developmental Disabilities, 26, 359-383)

  • ABA was substantially more effective for children with autism than
    the mixture of methods that is provided in many education programs
  • The popular notion that virtually any intervention can produce
    meaningful benefits for children with autism has not been confirmed
    by two controlled studies. Instead, ABA produced substantially
    larger improvements than intensive 'eclectic' treatment in both
    studies.
  • The eclectic" or mixed-method treatment is often recommended for
    children with autism by educators and is widely used in both public
    and private schools. Eclectic treatments, waste scarce resources
    and costs these children the opportunity to realize their full potential.
  • What is surprising is how many prominent individuals and
    organizations in the autism community and the education
    establishment endorse and promote the "eclectic" approach.

Justice Kiteley’s findings of fact March 30, 2005:
(D) Other Interventions for Treatment of Children with Autism
[333] Some of the experts spoke of other interventions such as
TEA-CCH, Floortime and an "eclectic approach". Some of these
were described more than others. However, I received no expert or
professional evidence that any other intervention available in
Ontario is equally or more efficacious.


“Special Education
needs to be flexible
therefore we provide
effective programs
& services using an
eclectic approach”

 

 

 

 

 

 


Research: "A comparison of intensive behavior analytic and
eclectic treatments for young children with autism,"

Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H.(2005. Research in Developmental Disabilities, 26, 359-383)

  • "Eclectic" treatment (a combination of TEACCH, sensory
    integration therapy and some ABA methods) did not prove very
    effective in classrooms specifically designed for children with
    autism. Mean change scores were substantially lower for the
    eclectic group than for the IBI group, in fact reflecting losses rather
    than gains over 14 months of treatment.
  • In short, the effect of "eclectic" treatment in both groups was to
    flatten or decrease rather than increase the slopes of the
    developmental trajectories of most children. Based on these
    findings, we would project that those children will lose more ground
    to their typically developing peers the longer they remain in such
    intervention programs.

Justice Kiteley’s findings of fact March 30, 2005:
[535] In the absence of such evaluation, I find that there is no
evidence that the special education programs and services available
to children with the exceptionality of autism provide an "appropriate"
education.


“The Ministry of Education
provides education not
therapy”

 

 

 

 

 


FACT:
School Boards do provide therapy in schools under PPM81
they just refuse to accommodate ABA/IBI under PPM81.

Justice Kiteley’s findings of fact March 30, 2005:
[497]
PPM81 Provision of Health Support Services in School
Settings (issued July 19, 1984) outlines the respective
responsibilities of the school boards and Ministries of Health and
Long Term Care (MOHLTC) and the Ministry of Community, Family
and Children's Services (MCFCS) for ensuring that students with
special needs receive health care support services they need in
order to attend school and learn.

These services are designated as "School Services" and are
defined to include: nursing services, occupational therapy services,
physiotherapy services, and speech-language pathology services.
All of the services are delivered either by or through personnel who
are governed by the Regulated Health Professions Act.


“The Ministry of Education
doesn’t have the budget to
provide ABA/IBI”

 

 

 

 


The funds are already there, up to $60,000 for a disabled child but
unbelievably, it does not require that the money a child generates
be spent on that child. Spending these funds to accommodate
appropriate ABA/IBI would put taxpayers’ money to far better use.

Justice Kiteley’s findings of fact March 30, 2005:
School funds generated per student:
[360] If a student meets the criteria for "multiple exceptionality", the
board might be allocated as much a $61,790.00 for a school year:
$3,800.00 Foundation Grant; a pro-rated SEPPA amount of
$3,390.00; $27,000.00 ISA 3; and $27,000.00 SIP. Of that, only the
SIP allocation is "velcroed" to the student. A significant portion (as
many as 40.1%) of successful SIP applications are made on behalf
of children in the autism exceptionality.

“ABA/IBI cannot
be done in schools”

 

 

 

 

 

 

 

 

 


Justice Kiteley’s findings of fact March 30, 2005:
[335] Based on the evidence of Dr. Leaf, Dr. Siegel and Dr. Dunlap,
it is clear that many U.S. school districts provide early intensive
behavioural intervention services to children with autism.
[410] Dr. Handle-Derry identified a number of issues that
contributed to the failure of schools, deficient IEP’s, lack of
understanding by educators of autism (with the consequence that
sometimes the experience in the classroom can cause
deterioration). If there was one single deficit, it was the failure to
provide ABA for children with autism. He considers ABA to be the
key to success for a child with autism.

Intensive behavioral treatment at school for 4- to 7-year-old
children with autism. A 1-year comparison controlled study.

Eikeseth S, Smith T, Jahr E, Eldevik S. Behav Modif 2002
Jan;26(1):49-68, PMID: 11799654
Results suggest that some 4- to 7-year-olds may make large gains
with intensive behavioral treatment, that such treatment can be
successfully implemented in school settings, and that specific
aspects of behavioral treatment (not just its intensity) may account
for favourable outcomes.

FACT: A few of the children in the Wynberg case did receive
ABA/IBI successfully in public schools, but only because of a rare
open minded principal or teacher or a court order. Each child made
considerable progress.

“The Ministry of Education
does not direct School
boards.
The School boards decide
how to best meet the needs
of special education
students”

The Ministry has directed school boards in the past. Just recently
the Ministry directed the school boards to implement a pilot project
for the 2003-04 school year, which included 10 school boards to
assess a Standards Based Approach for PDD/ASD. ABA/IBI was
not included in the pilot nor was it permitted.

Justice Kiteley’s findings of fact March 30, 2005:

[496] In addition to regulations, the Ministry has carried out its
responsibilities by issuing Policy and Program Memoranda (PPM)
that contain statements of Ministry policy and that direct the school
boards to undertake a particular course of action.

“The Ministry of Education
has not blocked
school boards from
implementing ABA/IBI
if they want to provide it”

 

 

 


Justice Kiteley’s findings of fact March 30, 2005:

[444] A negative message was consistently communicated by the
Ministry of Education, including by the Minister and the Deputy
Minister, that ABA/IBI was therapy and that ABA/IBI would not be
delivered in schools. Although it was not in a PPM, a guide or
standard, The Ministry of Education communicated a policy that
ABA/IBI would not be available in schools. Contrary to Odell's
evidence, the Ministry has constructed a "policy barrier".

Dalton McGuinty said in writing Sept 17, 2003:
“In government, my team and I will work with clinical directors,
parents, teachers and school boards to devise a feasible way in
which autistic children in our province can get the support and
treatment they need. That includes children over the age of six.”

FACT: Dalton McGuinty fought harder in court upon his election.

“The Ministry of Education
is meeting the needs of
Special Education students
with Autism in Ontario”

 

 

 

 

 

 

 

 

 

 

 


Factum of the Interveners
(Community Living - Canada and Ontario)
Decision of Kiteley J. at para. 216(g) (Appeal Book Vol. III, Tab
31, p. 662)
[Page 6 of the factum]

(d) Although officials in the Ministry of Education were well aware of
the IEIP through an internal task group at the Ministry of Community
and Social Services (the MCSS), the Ministry of Education
nonetheless undertook and pursued significant initiatives affecting
special education students without consulting with officials at MCSS
about children with autism.

Decision of Kiteley J. at paras. 256 (c)(iii-v) and 486 (Appeal
Book Vol. III, Tab 31, pp. 688-689, 798-800)
[Page 6 of the factum]
(e) Once children with autism entered the public school system, they
did not have access to appropriate special education programs and
services due to the failure of the Minister of Education to develop
policy and provide direction to school boards.

Decision of Kiteley J. at para. 535 (Appeal Book Vol. III, Tab 31,
p.821)
[Page 6 of the factum]
(f) There was no evidence to indicate that students with autism were
provided an appropriate education through the special education
programs and services available to them.

[Page 15 of the factum]
25. In this case, the government is failing to implement special
education programs which would complement the IEIP to ensure
that any benefits derived from the IEIP could be consolidated and
not completely lost if there was an inadequate transition for these
students with autism into the school system. The IEIP could not be
an ameliorative program unless coupled with a proper transitional
complementary program in the school system.


Aug 2006

Ministry of Education’s
Response to Shelley
Martel, MPP to Sessional
Papers No. P-153 & No. P-166 Page 2

The MOE is working
closely with the MCYS on a
number of initiatives to
improve school boards'
capacity to effectively
teach students with ASD,
including:

  • the establishment of a
    reference group that will
    provide us with advise on
    effective educational
    practices for students with
    ASD;

  • the development of an
    effective practices guide to
    provide information for
    educators on planning and
    implementing effective
    educational programs for
    students with ASD in
    schools; and

  • collaboration with
    MCYS' School Support
    Program-ASD's (SSP-ASD),
    which helps educators
    better understand how
    children and youth with
    autism learn and how the
    principles of ABA can help
    improve their learning;

 

 

 


The MOE has had the research and the answer to what constitutes
best practise for children with autism since 1998. When the IBI
guidelines were first drafted the MCSS included transitioning it to
school, the MOE removed themselves from the guidelines (as
provided in evidence to Justice Kiteley).

Following suit, parents have repeatedly provided the research at the
school level, at the ministry level, at school board SEAB’s (Special
Education Appeal Board’s) and at school board Tribunals. All efforts
have been blocked.

FOCA submits: Continued working tables and reference groups
are a waste of precious time, dollars and children’s futures. The
research supports their eclectic model loses IQ points for children
with autism, low intensity ABA provides minimal gains. Alternatively,
intensive behavioural intervention transitioned to school will provide
the best outcome for children with ASD, at the same time a cost
effective approach for offsetting heavily burdened special education
dollars as the children progress.

Children with autism deserve evidence-based intervention
Couper JJ, Sampson AJ, 2003 May 5;178(9):424-5. PMID:
12720505
Children in a school-based study who received behavioural
intervention gained an average of 25 language IQ points in the
first year of the intervention, with improvements in performance
IQ, communication and adaptability. On all scores, they
surpassed control children who received special education
according to best practice for autism, and the same intensity,
duration and supervision of therapy.

Effects of Low-Intensity Behavioral Treatment for Children with
Autism and Mental Retardation
Eldevik S, Eikeseth S, Jahr E, Smith T. J Autism Dev Disord 2006
Feb:36(2):211-24 PMID: 16477514
This study was done in the education setting, in an attempt to
evaluate a relatively small amount of one-to-one IBI (12 hours). A
comparison group of children who received one-to-one eclectic
special education treatment of similar intensity was included to test
whether the low intensity IBI was more effective than commonly
used alternative intervention. The eclectic model included a
combination of; (ABA, sensory integration, alternative
communication, TEACCH & clinical experience of particular
teachers).
Summary: On average, the behavioral group gained 8.2 IQ points
by comparison the eclectic group lost 2.9 IQ points. However, the
gains of the behavioural group were small and of questionable
clinical significance, when compared to the outcomes reported in
previous studies employing a full intensive behavioural intervention.

Evaluating the effectiveness of teacher training in ABA
Grey IM, Honan R, McClean B, Daly M, 2005 Sep;9(3):209-27.
PMID: 16144826
Target behaviours included aggression, non-compliance and
specific educational skills. Teachers recorded observational data
for the target behaviour for both baseline and intervention sessions.
Support plans produced an average 80 percent change in frequency
of occurrence of target behaviours.

SUMMARY OF FACTS & PROVIDING SOLUTIONS

 

Less than 20 years ago the prevalence of autism was 2 to 5 in 10,000 births*. In Ontario those numbers
almost doubled by 1996 and in 1998 prevalence was reported as 2.09 per 1,000 children [OHIP 2000].
Today the incidence of autism is 1 in 165 births.

Extensive science based research has provided that the symptoms of autism can be ameliorated with
treatment known as ABA/IBI, resulting in up to 47% of children reaching normal functioning, while the
balance of children will make gains considered substantial to minimal. All of which will increase their level
of independence and consequently reduce the level of need for future social assistance.

The Ontario government portrays to the public that children with autism are placing a huge financial
burden on Ontario’s limited and scarce resources.

We don’t dispute that the initial cost is expensive, but the proven fact is it will cost 1 to 2 million more per
child over their lifetime if they don’t receive treatment. FOCA wants the public to know that our goal is two
fold; 1) To provide these children with the best quality of life they are able to achieve and in doing so 2) To
save a future crushing financial cost to Ontario’s taxpayers by offsetting and in some cases negating the
costs of future social assistance.

FOCA provides that the existing funds to accomplish this are already available in the system. We are not
asking for a larger cash infusion. We are asking that the existing funds be spent in an efficient and costeffective
manner.


THE PROVINCIAL IBI:

While FOCA is pleased that Ontario has partially listened to both parents and professionals and initiated a
budget for IBI treatment starting in 1999-2000. The inefficiency of how the Ontario Government has spent
the budget has created the wait lists.

The government has stated to the public in a press release that the Wynberg/Deskin law suit ‘muddied the
waters’ by extending the preschool IBI beyond age 6 when in fact it has not. The judgement was to direct
the Ministry of Education dollars that each child generates to accommodate continued IBI.

While Ontario continues to spend three times the funds necessary to build its own “Made in Ontario
Service Delivery”, the result of that means a budget that could have provided treatment for all children is
being eaten up by the inefficiency of the direct service model. Thus, children in Ontario are not receiving
treatment and as such will pay that cost with a lifetime of disability that could otherwise have been
prevented.

As outlined in the above FACT SHEETS, and stated in the 2004 Auditor General’s report, “The directfunding
option is more economical from the Ministry's financial viewpoint.”

The DFO model would sufficiently fund all the children on the waitlist [CHART A] and would also serve the
reported 25% of children being deemed as ineligible because they didn’t fall in the severe category.

If Ontario would move to a 100% direct funding model every child would receive treatment immediately
upon diagnosis and it would immediately negate the waitlist.


TERMINATION OF IBI TREATMENT:

Termination should only be done by an independent clinical psychologist.

Ontario’s IBI guidelines are constantly being revised, changing the landscape of criteria for both a child’s
eligibility and discharge from treatment. These changes in criteria are not based on clinical research or
best practices they are solely to allow the government an alternate reason to terminate a child’s treatment.

The unethical criteria for termination of treatment will position the government to say we didn’t discharge
the child based on their age it was based on the criteria.

Under a 100% direct funding model a child’s independent clinical psychologist (bound by medical and
ethical standards) would diagnose and recommend the level of intensity for IBI treatment. They would
also prescribe when a child’s treatment is complete. For example: If continuation of IBI is needed beyond
age 6 the child’s clinical psychologist would prescribe the transition/continuance into school.

TRANSITIONING IBI TO SCHOOL

Amend Policy 81 to accommodate IBI for children with autism while accessing Public Education.

Up to $61,790. per child per year is already available under the Ministry of Education in the Special
Education budget. Redirect these funds to accommodate IBI therapy / therapists instead of non trained
EA’s and Special Education programs and services that have not been demonstrated to be effective for
children with autism.

For children needing a more intense model when transitioning to school, the Ministry could
Amend s.170(1)** to include the purchase of service outside the board. (Comparative to the purchase of
service by school boards for ‘Giant Steps’) or implement a voucher system for the purchase of service
from an already established ABA/IBI school, such as New Haven and The Learning Centre.

The Ministry of Education’s position that ABA can not be delivered in schools, need only look to the U.S.A.
to provide it can be done, it is being done with great success and they have been doing it for years. In
fact, IBI has already been successfully integrated into Ontario’s pre-school system.

FOCA submits that for both the IEIP and the Ministry of Education sufficient funding is already in place to
meet the treatment needs of children with autism in Ontario.

All that’s required is for the Ontario government to take the lead in directing those funds to be spent in a
cost-effective manner. This will ensure that children with autism will have their needs met to access a
meaningful education and facilitate them reaching their best potential. Thus, providing Ontario with a
future generation of productive and contributing adult citizens rather than a population of adults living a
dependent life in supported group homes on social assistance.

To quote Lindsay Moir - The question for me is "How do we get the "adults" to put aside issues of power,
control, authority, and self-validation. I need to hear how we build that "capacity" into the system.

FOCA submits, in the end Ontario will not only save children with autism but they will also save money.


Footnote;
When FOCA refers to behavioral intervention, applied behavior analysis (ABA), or intensive behavioral intervention (IBI), we mean intervention that employs the principles and methods of behavior analysis, not generic intervention programs that purport to be “behavioral” but actually employ only a few superficial behavioral techniques.

 

 

RESEARCH & INFORMATION SOURCES

 

Research & Information sources accessed for this FACT SHEET

Autism and genetics. A decade of research. Smalley S.L., Asarnow R.F., Spence M.A., Arch Gen Psychiatry. 1988 Oct;45(10):953-61.

Cost-benefit estimates for early intensive behavioral intervention for young children with autism: General model and single state case.

Jacobson, J.W., Mulick, J.A., & Green, G. (1998). Behavioral Interventions, 13, 201-226.

The Cost-Effectiveness of Expanding Intensive Behavioural Intervention to All Autistic Children in Ontario. Sanober S. Motiwala,

Shamali Gupta, Meredith B. Lilly, Wendy J. Ungar, Peter C. Coyte. Department of Health Policy, Management and Evaluation University of Toronto, ON Vol.1 No.2, 2006

What is Evidence-Based Practice and Why Should We Care? Jeri A. Logemann Ph.D. March 14, 2000 issue of The ASHA Leader, a journal of the American Speech-Language-Hearing Association.

Behavioral treatment and normal educational and intellectual functioning in young autistic children. Lovaas, O.I. (1987). Journal of Consulting and Clinical Psychology, 55, 3-9.

Long-term outcome for children with autism who received early intensive behavioral treatment. McEachin, J.J., Smith, T., & Lovaas, O.I. (1993). American Journal on Mental Retardation, 4, 359-372.

Outcome of early intervention for children with autism. Smith, T. (1999). Clinical Psychology: Science and Practice, 6, 33-49.

A comparison of intensive behavior analytic and eclectic treatments for young children with autism, (2005). Howard, J. S., Sparkman, C. R., Cohen, H. G., Green, G., & Stanislaw, H. Research in Developmental Disabilities, 26, 359-383

Interventions to facilitate social interaction for young children with autism: Review of available research and recommendations for educational intervention and future research. McConnell, S. (2002). Journal of Autism and Developmental Disorders, 32, 351-372.

Evidence-based practices for young children with autism: Contributions from single-subject design research. Focus on Autism and Other Developmental Disabilities, Odom, S. L., Brown, W. H., Frey, T., Karasu, N., Smith-Canter, L. L., & Strain, P. S. (2003). 18, 166-175.

Evaluating the effectiveness of teacher training in Applied Behaviour Analysis. Grey IM., Honan R., McClean B., Daly M. J Intellect Disabil. PMID: 16144826

Effects of Low-Intensity Behavioral Treatment for Children with Autism and Mental Retardation. Eldevik S, Eikeseth S, Jahr E, Smith T. J Autism Dev Disord 2006 Feb:36(2):211-24 PMID: 16477514

Intensive behavioral treatment at school for 4- to 7-year-old children with autism. A 1-year comparison controlled study. Eikeseth S, Smith T, Jahr E, Eldevik S. Behav Modif 2002 Jan;26(1):49-68, PMID: 11799654

Children with autism deserve evidence-based intervention. Couper JJ, Sampson AJ, 2003 May 5;178(9):424-5. PMID: 12720505

Mental health: A report of the Surgeon General. United States Surgeon General (1998). Washington, DC: Author.

Justice Kiteley’s findings of fact March 30, 2005

The Ontario Auditor General’s report November 4, 2004

Public Accounts, Hansard of the Standing Committee on Public Accounts from the day the Auditor's report was tabled. Shared by Bruce McIntosh - Ontario Autism Coalition.

Standing Committee on Public Accounts follow up document; shared by Shelley Martel, MPP and NDP Critic for Health and Long-Term Care.

Freedom of Information documents; CYS2005-0014, CYS2006-0014 shared by Shelley Martel, MPP and NDP Critic for Health and Long-Term Care.

Freedom of Information documents; CYS2005-0033, CYS2006-0003 shared by Bruce McIntosh - Ontario Autism Coalition.

House of Commons, Hansard, Tuesday, June 7, 2005 - shared by Andrew Kavchak.

Factum of the Interveners; The Community Living Association of Canada and Community Living Ontario. Intervener status at the Wynberg/Deskin appeal.

Dalton McGuinty’s infamous letter on Sept 17, 2003, “I promise the discrimination ends if I’m elected”, shared by Nancy Morrison

** Ministry of Education; s.170(1) Every board shall... provide or enter into an agreement with another board to provide in accordance with the regulations special education programs and special education services for its exceptional pupils

 


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