"The primary goal of intervention is to enable children to form a sense of their own personhood."
Stanley I. Greenspan
1.Sue Bluestein is doing everything she can to make a better life for her son Christopher who requires
specialized therapy to help him adapt to and interpret the world around him. This is because her son
Christopher was diagnosed with Autism Spectrum Disorder at the age of 3. His doctor prescribed
specialized therapies that would increase his chances at social integration and would improve his chances
of securing employment later on in life.i These therapies are called Applied Behavioural Analysis and
Intensive Behavioural Intervention. As a mother, this was a relief to hear until she learned that there was
an enormous waiting list back-up and that her son had to get in line behind thousands of other children.ii
The province pays for treatment, but only for a limited number of children between the ages of 2
and 5.iii Her son is already three. It is crucial that children receive the therapy at an early age according
to studies and this is reflected in the research done by the bi-partisan Senate Committee.iv Therefore, like
many parents in Ontario, Sue borrowed $60 000 so that her child could receive one year of treatment now
while waiting for the government funding, but now it seems that he will remain on the waiting list.
2. Currently there are a number of benefits, services and programs available in the policy area
surrounding Autism, but have rigid criteria for eligibility. Eligibility for most income benefits are based
on a “needs assessment” calculated based on financial need and the severity of the disability and financial
need. Disability related benefits are generally determined in Canada by certified Canadian medical
doctors and the financial component based on reports from Canadian Revenue Agency (CRA).
Organizations and services are funded both directly and indirectly from the government and often depend
on other non-governmental sources of income to provide the service. The following paragraphs will
explore different programs available to those with Autism.
The Ontario Disability Support Program (ODSP) is income support available to those with
disabilities that consists of a shelter and living allowance. The shelter allowance is reduced if the
individual lives with a family member or in any sort of subsidized housing. There is also Assistance for
Children with Severe Disabilities (ACSD), which is government assistance through the Ministry of
Children and Youth Services intended to cover the extra costs of caring for a child with a severe disability
so that they might live a life as normal as possible both at home and in the community. Our social policy
for people with Autism did not always value the communal inclusion of individuals with Autism and has
a history of putting all those with intellectual disabilities into institutions. In March of 2009 the last three
of these institutions will close.v Hopefully this is happening for ethical reasons and not economical
benefit. Needless to say, it is still an ongoing fight for equal inclusion since people do not want to finance
these motions for equality. The focus of our taxation is simply bias since society is constructed to benefit
those who are intellectually the norm and will gladly fund many areas that do not directly benefit those
with Autism in any way.
The Ministry of Children and Youth Services also funds the Special Services at Home (SSAH)
program which is a time-limited funding intended to cover supports and services not available elsewhere
in the community for people with a developmental or intellectual disability. It is specifically intended for
individuals living with their families in the community.
There are also programs such as the Assistive Device Program (ADP) funded by the Ministry of
Health and Long-term care. This program intends to pay for adaptive devices essential for independent
living for people with long-term disabilities with the objective to promote inclusion. The Passport
Program is a newer program intended to fund the participant directly to allow them to chose where the
funding goes. This funding is considered a Community Participation Support and is a part of the funding
through the Ministry of Community and Social Services. It must be applied for by a deadline each year.
Alex Bezzina of the ADM Program management division for the Ministry of Children and Youth services
reported that out of 2890 applicants, 254 were granted passport funding. This means that 2636 people
were added to the waiting list.vi The majority of those on the waiting list in 2007 remained on the waiting
list for 2008. vii
Another program serving those with Autism is the Residential Rehabilitation Assistance
Program for Persons with Disabilities (RRAP-disabilities): This funding assists homeowners and
landlords to pay for repairs to modify homes to make them more accessible for people with disabilities.
The Autism Intervention Program is the current program that relates that provides some support in the
form of Applied Behavioral Therapy available to children from ages 2 to 5. There are 5 components to
this funding including therapy (ABA/IBI), support services to families, transition services and support
and a school support Program that includes 185 Autism consultants. The degree of the severity is a
component in eligibility. Evaluating ability is often an area of dispute in the Autism community. viii
3.
There are a number of current policies that affect those with Autism, but are not necessarily
specific to Autism. Currently we are lacking policy that specifically addresses people with
Autism. Some bills introduced in 2006 such as Bill C-211 and Bill C-304, that were not passed,
aimed to have Autism therapy included directly in the Canada Health Act. Motion M-172 on the
other hand was adopted in 2006 requiring the nation to develop a national strategy that includes:
“the development of evidence based standards for the diagnosis and treatment
of autism; the implementation of innovative funding methods for the care of those
with autism; the provision of additional federal funding for autism research; and,
the implementation of a national surveillance program for autism.”ix
Two key areas of policy that affect children with Autism are the Canadian Health Act and Canadian
Education Act that ensure universal standards for all Canadians, but these universal standards are not
being met for children with Autism and this is the base for the policy review. Both acts indicate that
children with Autism are both entitles to health care and a proper education. Unfortunately the way they
access these rights is through eligibility determined by neurologically dominant people. People with
autism must subject themselves to the powers of the “normal” people of society in order to access their
legitimate rights.
4. There are several large stakeholders of this current Supreme Court review that are important to
examine in order to understand the diverse and sometimes opposing interests at stake.
Not everyone feels that Applied Behavioural Analysis is a “necessary treatment”. Michelle
Dawson, a stakeholder included in the bi-partisan report, has a blog that she calls “The Autism in Crisis”:
the Science and Ethics of Autism Advocacy where she claims that this therapy is unethical and
dehumanizing. She substantiates her claim by including a multiple peer-reviewed journals. One discusses
ABA therapy and its use in curing queer people as part of a chilling UCLA’s Feminine-Boy project.x
This project had been seen as therapy in the past and today would be viewed as a violation of Human
Rights. Her point was that this therapy can program anyone to change their beliefs and behaviours, but at
such a cost of them losing their identity and struggling with internal conflict. Many people with autism
are banding together to inform people that they disagree that neurologically dominant people have created
a system to pathologize their group identity. If any people with autism succeed at developing in areas that
the “medical professionals” deemed impossible for their group then the “experts” claim that they were not
part of the group in the first place, but part of a higher functioning diagnosis and that they should not
speak for others. This is frustrating for those in the Autistic Rights movement believe that they overcame
the challenges that were causing them the most problems with an approach that involves dignity and
respect and want to share this discovery. One key player is Temple Grandon phd who achieved status by
society’s standards and still is not being heard.
The key argument from the Autism Rights Movement including people such as Michelle Dawson
is that society needs to recognize individuals with Autism as neurologically different and not adults with a
metal disorder. Michelle Dawson has filed an “application for leave to intervene” in the ongoing Supreme
Court review. In her application she is concerned with linguistics. The language in the court proceeding
must stop using language that is offensive and discriminatory to those with Autism by suggesting that
there is a “cure”. Those with the Autism Rights Movement are opposed to a “mandatory treatment’ of
autistic children. Autistic people must not be cured from their “natural and alternative neurological state
or difference”.
Caregivers and families are another very important stakeholder people with Autism of children
with autism. Many disagree with Michelle Dawson for the reason that they see her as “higher
functioning” then those with classic autism. The parents suing the government argue that this treatment is
a necessary treatment for their children with autism. It is crucial to their ability to access an education and
function as productively as possible as inclusive members of Canadian society. It is both a right to
education and a right to medical treatment covered under the Canadian Health Act. The situation can only
be remedied with a full funding of both ABA and IBI treatment within the public school system if they
are to access their education according to the official application to the court.xi Taxpayers without
specific interest in Autism are also key stakeholders in our individualistic society as they are concerned
with having to pay for these expensive therapies. Ten years ago no child was receiving therapy and that
in the last two years the funding has increased drastically. We are enduring many social cutbacks and
many are without housing and enough food. Paying for all these therapies all at once is unrealisticxii
Non-profit sector are invested in supporting policies that benefit those with Autism, lack direct
support in this case one way or another. This may be because they depend on government funding and
they are not supposed to be political or this might also have to do with conflicting opinions on ABA
therapies. Many organizations are currently utilizing other methods and treatments. Currently there are a
number of techniques used to support those with Autism and these include the Lovass (ABA/IBI) method,
TEACHH (uses structure and predictability to promote communication) and PECS (Picture Exchange
Communication – believes that regular social rewards to not necessarily appeal to those with Autism.)xiii
Finally we have the Ontario public: Standing bi-partisan senate Committee on Social
Affairs: The Senate is operating in the long-term best interests of widespread rights of the public. In
March 2007 a ground breaking report was produced by the senate committee titled: “Pay now or pay
later: Autism Families in Crisis. The senate recommended “urgent initiatives that the federal government
could implement over the next two years in response to the crisis situation faced by many individuals with
Autism Spectrum Disorder (ASD) and their families”.xiv The autism Right’s movement is probably
welcoming to a government that does not want to have to pay out for these therapies.
The challenge here is enormous. As a nation we want to create an equal situation for all people,
but we must not turn our heads from the Autism community. Stanley Greenspan wrote a book titled The
Child with special needs that has been openly supported by the Autism Right’s movement. Stanley
Greenspan writes:
The assumption that children with PDD [pervasive developmental disorder that
includes autism] tend to remain relatively unrelated to others, rigid, mechanical, and
idiosyncratic (as stated in DSM-IV) is not supported by our recent clinical experience.
With early diagnosis and a comprehensive, integrated, and developmental relationshipbased treatment approach, many children originally diagnosed with PDD are learning to
relate to others with warmth, empathy, and emotional flexibility. We have worked with a
number of children diagnosed with autism or PDDNOS between the ages of 18 and 30
months, who, now older, are fully communicative (using complex sentences adaptively),
creative, warm, loving, and joyful. They attend regular schools, are mastering early
academic tasks, enjoy friendships, and are especially adept at imaginative play.
We must keep in mind that a fight for equality for all can be based on skewed information that is a result
of our systematical structures that maintain inequality. All stakeholders must be considered in all issues in
order to create social policy that abides by the laws of our country.
i
(McEachin, 1993)
ii
(Affairs, 2007)
iii
Ibid
v
(Closing Intitutions,2008)
vi
(Passport Funding, 2008)
vii
(OAARSN-news, 2008)
viii
(Affairs, 2007)
ix
Ibid
x
(Leaf,2008)
xi
(Families, 2006)
xii
CityLine Interview. Accessed November 15th. Youtube. Autism Funding.
xiii
http://www.wrightslaw.com/info/autism.methods.compare.pdf
xiv
(Affairs, 2007)
(n.d.). Closing Intitutions . Guelph, Ontario, Canada: University of Guelph.
Affairs, S. b.-p. (2007). Pay now or pay later: Autism Families in Crisis. Ontario Senate. Ontario: Ontario
Government.
Current Interventions in Autism - A Brief Analysis. (2008, November 4th). Canada.
Families, C. A. (2006). Official Court Application. Ontario.
Leaf, R. &. (2008). Sense and nonsense in the behavioral treatment of autism: It has to be said. The UCLA
Young Autism Project .
McEachin, J. S.-t. (1993). Long-Term Outcome For Children With Autism Who Received Early Intensive
Behavioral Treatment. American Journal on Mental Retardation , 97, 359-372.
University, G. (2008, November 4). Passport Funding. Guelph: University of Guelph.
General ressources:
http://autismcrisis.blogspot.com/ Michelle Dawson’s blog. Accessed Novemeber 4th, 20008
Eaves, L.C., & Ho, H.H. (2004). The very early identification of autism: outcome to age 4 1/2-5. Journal of
Autism and Developmental Disorders, 34, 367-378.