World Summit on Learning Disabilities

The one essential thing is that we

strive to have light in ourselves. Our

strivings will be recognized by others,

and when people have light in

themselves, it will shine out from

them. Then we get to know each other

as we walk together in the darkness,

without needing to pass our hands

over each other’s faces, or to intrude

into each other’s hearts. The truth is

that every child and student has his or

her own highly specific and original

way of growing up. To deny this

diversity is to deny the very existence

of individuality. We should seek

wisdom more than anything else…

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World Summit 2008

Learning Disabilities: Fact or Fiction?

Foothills Academy

The one essential thing is that we

strive to have light in ourselves. Our

strivings will be recognized by others,

and when people have light in

themselves, it will shine out from

them. Then we get to know each other

as we walk together in the darkness,

without needing to pass our hands

over each other’s faces, or to intrude

into each other’s hearts. The truth is

that every child and student has his or

her own highly specific and original

way of growing up. To deny this

diversity is to deny the very existence

of individuality. We should seek

wisdom more than anything else…

wordqwertyuiopasdfghjklzxcvbnmqw

World Summit 2008 Learning Disabilities:

Fact or Fiction?

Why the need?

It is estimated that 10 - 15%

of the population has a

learning disability and / or

ADHD.

Many who are undiagnosed

live marginal lives,

underutilizing their skills and

abilities. This has a cost to

business, society and to

personal lives.

The purpose of this important

summit is to transition

learning disabilities from an

invisible disability into a

visible ability.

The World Summit on

Learning Disabilities 2008

brought together 250 top

world experts in the field of

Learning Disabilities and

ADHD, including: psychology,

medicine, government,

research, education, justice,

corporate, and consumers.

This publication has been

purposefully designed to allow

for education, debate, and

development of future

discussion around learning

disabilities.

We aim to educate, inform,

inspire, and reach our goal to

create awareness within

regional and international

communities to affect change.

Table of Contents Background Information

Dr. Michael Rutter Intellectual Disability: Changing Concepts and

Approaches in Research and Clinical Practice

4

Dr. Ian Smythe Defining Dyslexia

24

Dr. Jeff Gilger Atypical but natural neurodevelopmental variation

as a basis for thinking about Dyslexia and LD

55

Dr. Jim Koller Mental Health and Learning Disabilities Through the

Life Span

74

Dr. Yude Hentleeff The Right of Learning Disabled Students to

Meaningful Access: Recent Court Decisions for

Learning Disabled Students, Governments, and

School Systems

80

Theme One: Assessment and Diagnosis

Niki Wosnack Identification and Early Intervention for LD: A Public

Policy Perspective

114

Theme Two: Intervention and Special Education

Dr. Maureen Lovett Learning Disabilities in Childhood and Adolescence:

Intervention and Special Education

126

Theme Three: Transitions

Dr. Larry McCloskey

Dr. Nancy McIntyre

Transitions - Supports in Post-Secondary Education 155

Dr. Jim Swanson The National Children’s Study : Critical Issues of

Psychiatric and Learning Disorders

179

Dr. Bonnie Kaplan APRON - Alberta Pregnancy Outcomes and Nutrition

195

Theme Four: Failures of Past Initiatives

Dr. Yude Hentleff Systemic Change : A Critical Means of Achieving

Equality for Students with Learning Disabilities

202

Intellectual Disability: Changing Concepts In Research And Clinical Practice

By Dr. Michael Rutter

2008 Foothills Academy World Summit on Learning Disabilities

It assumes that IQ can be measured in a reliable and valid

fashion that can be quantified in a way that fits in with

psychometric principles.

Much evidence in support but:

standardization samples lack the lower extreme

the “Flynn effect” shows massive secular change

problem of variation across different IQ tests

problem of IQ change over developmental course

problem of testing when major sensory deficits are present

Intellectual Disability Is Essentially A Psychometric Concept

4

Wisc IQ Gains 1947-2002

0

5

10

15

20

25

30

1950 1970 1990 2000

Gai

n

Year

Ravens

F.S. IQ

Comprehension subtest

Graph adapted from Flynn 2007

Wechsler Sub Score Patterns In Adolescents With ASD And Controls

0

1

2

3

4

5

6

7

8

9

DS PA PC OA BD

Controls

ASD

(Based On Lockyer & Rutter, 1970)

5

Cognitive Level At Entry To The UK And At 11 Years (Institution-reared Romanian Adoptees)

40

60

80

100

120

Denver Quotient at Entry to the UK

WISC IQ at Age 11

n=120

IQ Scores Are Measures Of Current Intellectual Performance And Not Of Innate Intellectual Potential

But high predictive value for:-

1- Educational attainments

2- Social and occupational functioning

6

Strongly, but imperfectly, associated

Practical implication is need to assess adaptivefunctioning as well as IQ scores eg use of Vinelandscales

IQ And Adaptive Functioning

Opinions differ because some assume that I.D. is synonymous with need for services. But …

cf, Barbara Wootton on the dangers of diagnosis based on social functioning. Should the rate of one-leggedness go up in times of high unemployment and down when the employment rates improve? Obviously not.

cf, Has someone ceased to have diabetes if the disease is well controlled by insulin injections? Obviously not. Ditto with schizophrenia or bipolar disorder in relation to control through psychotropic medications.

Should Intellectual Disability (I.D.) Be Diagnosed If Adaptive Functioning Is Within The Normal Range

7

Even for service planning, administrativeprevalence is of limited value because the datadenote what use is being made of services and notwhat services are needed.

Note, too, that service needs are much influenced by associated problems.

Administrative Prevalence Of I.D May Be Of Use For Service Planning But It Is Useless For Scientific Purposes

The terms are misleading but the conceptualdestination is both valid and clinically important.

Differentiation Between So-called “Organic” And Socio-cultural I.D.

8

“Gaussian” Distribution Of IQ

Pro

po

rtio

n o

f in

div

idu

als

(%)

IQ Points

10070 130

2.5%2.5%

95%

It is no more, or less, “sociocultural” than variations within the 70 to 130 range. Rather such mild I.D. will be influenced by the usual interplay among genetic and environmental influences.

The findings show:

- high familiarity

- associations with social disadvantage

- normal life expectancy

- normal fecundity

- in adult life, functioning below normal but within the

normal range

It Follows That The IQ Distribution Below 70 Is Likely To Represent, In Large Part, The Bottom End Of The Normal Distribution

9

The research findings show:- low familiarity- at most, a weak association with social

disadvantage- strong association with genetic mutations (eg

Down syndrome)- reduced life expectancy- reduced fecundity- in adult life, most severely impaired - marked brain pathology

By Contrast, Severe ID (+/- Below 50) More Likely Due

To Causes Not Applicable Within Normal Range

However, there is significant overlap.

A few cases of severe I.D will represent normal variation.

About 10% of cases of mild I.D will be due to the same pathological causes as in severe I.D

Thus, The Findings Tend To Validate The Distinction Between “Severe” And “Mild” I.D.

10

It is highly probable, but not proven, that the true distinction is between pathological I.D, and I.D that is a normal variation (rather than between severe and mild I.D as such).

However, across the whole of the IQ range the level of IQ is a substantial predictor of later functioning, so it is important to assess IQ level

Further…

Medical history

Family history

Neurodevelopmental examination

Karyotyping

DNA (for Fragile X)

Further investigation according to clinical indication

Crucial Need To Undertake A Systematic Medical Assessment

11

It is essential, clinically, to obtain an accurate pictureof the pattern of cognitive strengths and weaknessesand this requires a systematic quantitative assessmentof such specific cognitive skills. On the whole, it is notparticularly useful to deal with this issue in terms ofcomorbidity and diagnostic categories (because of theartificiality of cut-off points).

Generalized I.D And Specific Learning Disabilities

A definite reality to the concept of meaningfullydifferent patterns associated with specific geneticconditions eg, Williams syndrome, Prader-Willisyndrome, XYY, Rett syndrome, Down syndrome, ASDetc.

However, crucial to recognize the importance of largewithin-group variation. Also, the existence of thephenotype does not mean that environmentalinterventions cannot be helpful.

Concept Of Behavioral Phenotypes

12

Need to differentiate between familial genetic

transmission and de novo mutations.

Thus,

most cases of Down syndrome de novo

almost all cases of Rett syndrome de novo

about half the cases of Tuberous Sclerosis de

novo.

Genetic Considerations (1)

Even within single gene, genetically determined

disorders, huge individual variation in manifestation.

- sometimes mechanism understood (eg, number

of trinucleotide repeats in Fragile X).

- sometimes mechanism unknown (eg, variable

expression of tuberous sclerosis).

- sometimes contingent on G x E (eg,

phenylketonuria – PKU).


13

For mild I.D., most genetic influences likely to operatein a multifactorial fashion (as for IQ generally).

however

NB, Importance of submicroscopic copy numbervariations (CNV) in addition (how influential?).

Also, NB Likely variations in heritability with level ofdisadvantage + possibility of rGE and G x E.


Both relative importance and types of environmental hazardvery variable across the world but include:

- very premature gestation and subsequent

bleeding into the brain

- prenatal infections

- serious postnatal infections (eg, malaria,

meningitis, HIV)

- serious head injury

- serious malnutrition

- gross environmental deprivation

- contributory role of visual and hearing defects

Environmental Influences

14

All research is consistent in showing that the rateof psychopathology in individuals with I.D issubstantially raised relative to the generalpopulation, although many individuals with I.Ddo not exhibit a clinically significant mentaldisorder.

At least in N. America, this is usually dealt withunder the banner of “comorbidity”, but this is ahighly misleading way of expressing the situation

Associations Between I.D And Psychopathology

When properly used, comorbidity is a term applied to theco-occurrence of two (or more) separate and distinctconditions;

obesity and type 2 diabetes (or arthritis). hypertension and coronary artery disease (or stroke).

asthma and chronic obstructive pulmonary disease.

When comorbidity is identified, it may be due to severalquite different mechanisms and it becomes crucial todetermine which is operative.

Comorbidity

15

Most crucially, when the two patterns essentially represent two facets of the same basic condition.

eg;

1. I.D. and autism

2. Down syndrome and congenital heart disease

3. Prader-Willi syndrome and obesity

4. Rett syndrome and epilepsy

When Is Co-occurrence Not Due To Comorbidity?

Certainly, NOT!

To the contrary, usually essential to record eachbecause they are likely to have importantimplications for both treatment and prognosis.

If Co-occurrence Reflects Different Facets Of Same Condition, Does This Mean Facets Should Not Be Seperately Diagnosed Or Classified?

16

Step 1.

Is the form of the psychopathology of a type that might be regarded as likely to reflect a facet of the I.D?

eg, ASD

Stereotypies with ADHD

Or is the psychopathology of a type that might be found at any level of IQ?

eg, anxiety disorder

depression

oppositional defiant disorder

conduct disorder

Step 2.

Differential diagnosis within these two broad groupings.

What Approach To The Assessment Of Associated Psychopathology Is Advisable?

1. Assessment of patterns of family strengths and limitations including coping strategies.

2. Functional analysis of variations over time and place of psychopathology;

• Provoking stimuli

• Function of communicative difficulty

• Features that prolong the problem

• Time of day (or week)

• Consistency in family response

Approach To Planning Interventions (1)

17

3. Assessment of adequacy of school placement

Scholastic level appropriate

Adequacy of behavioural control

Adequacy of personal support/teaching

Bullying/scapegoating

4. Assessment of physical needs

Control of epilepsy

Identification and correction of hearing/visual or

language impairments

5. Need for genetic counselling

Approach To Planning Interventions (2)

1. Organic brain dysfunction (including epilepsy).

2. Specific effects of individual conditions.

3. Side-effects of medication.

4. Communicative and perceptual deficits.

Some Intrinsic Risk Factors For Psychopathology

18

Need to work with families throughout.

1. Preschool (home and centre)

cf, Stroh et al book and DVD

2. Schooling

Mainstream (additional personalized input)

Special unit or special school

Weekly or full boarding

3. Respite care

4. Use of medication

5. Services to span school to work (either sheltered or not).

6. Services to help with housing needs and independence.

7. Services for support after parents become unable to provide support.

Provision Of Services Across The Lifespan

Stroh, K., Robinson, T., Proctor, A. (2008). Every child canlearn: Using learning tools and play to help children withdevelopmental delay. London, Sage Publishing.

Howlin, P. (2008). Special Education. In: M.Rutter, D.Bishop,D.Pine, S.Scott, J.Stevenson, E.Taylor, A.Thapar (eds).Rutter’s Child and Adolexcent Psychiatry 5th edition.Blackwells.

Einfeld, S. & Emerson, E. (2008). Intellectual Disability. In:M.Rutter, D.Bishop, D.Pine, S.Scott, J.Stevenson, E.Taylor,A.Thapar (eds) Rutter’s Child and Adolexcent Psychiatry 5th

edition. Blackwells.

Key References

19

The great majority of individuals with mild I.D and a small

minority of those with severe I.D become absorbed into the

general population in adult life. That is, they will look after

themselves, live independently, have some sort of job, and have

a family. Some will continue to need a degree of support/shelter

but, nevertheless, they will form part of the broader

community. Accordingly, for them, the questions cannot be

whether they should be segregated but, rather, how and when

they can be helped to be “normalized” in so far as their

impairments allow.

Pluses And Minuses Of “Normalization” (1)

For the majority of individuals with severe I.D. complete

normalization is not a realizable goal because of the degree of

their intrinsic impairments. Nevertheless, what should be a goal

is the ability to live their life to the full within what is possible.

For many, this should (and can) include worthwhile self-help and

work skills, a reasonable degree of privacy, the opportunity for

friendships and social activities, and the possibility of both

sexual relationships and partnerships

Pluses And Minuses Of “Normalization” (2)

20

It would be possible to have another 30 slides on the keychallenges and how they might best be met but time has runout so let me conclude by just listing a few key areas ofchallenge:

1. The need for a greater investment in biological research andan accompanying commitment to use findings to improvecare

2. The need for systematic study of the family functioning andparenting of individuals who showed I.D in childhood. Is thetransmission of difficulties to the next generation largely afunction of low IQ per se or of the accompanying socialdisadvantage?

Challenges For The Future (1)

3. What is really achieved by the use of psychotropic

medication in individuals with I.D. (particularly severe I.D)?

What is the risk/benefit ratio?

4. Concerns are sometimes expressed over the risks to children

of being reared by parents with I.D. How great are those

risks (in what circumstances)? How might they be reduced

and when might it be reasonable to remove children from

the home?


21

5. In general, there seem to be at most minor educational risks

associated with somewhat larger average class sizes. By

contrast, very young children and those with disabilities

seem to need much smaller classes. This issue warrants

much more serious study.

6. The rate of serious abuse is worryingly high in residential

facilities for individuals with disabilities of most kinds. What

can be done to deal with this serious problem?


7. Finally, technological advances in the years to come will

undoubtedly greatly increase the possibility to identify fetuses

with risks or manifest abnormalities of one sort or another.

Under what circumstances, should termination or selective

feticide be allowable? Currently, it is allowable with definite

seriously handicapping conditions such as Down syndrome

but what about treatable conditions such as “hairlip” or cleft

palate? Or, a modestly increased risk of having ASD? There

are no easy answers, but the issues will have to be addressed


22

Major strides are being made in the study of I.D, and for that we should be truly grateful. But as is the way of science, each new advance throws up fresh problems. During this World Summit, we will need to discuss and consider these issues and, hopefully, come up with at least possible partial solutions for some of the dilemmas.

Conclusion

Intellectual Disability: Changing Concepts In Research And Clinical Practice

By Dr. Michael Rutter

2008 Foothills Academy World Summit on Learning Disabilities

23

Defining Dyslexia

Dr. Ian SmytheFoothills Academy World Summit on Learning Disabilities, Calgary

AIMS

• To review issues concerning definitions of dyslexia and their usage.

• To review various definitions of dyslexia.

• To highlight a possible way forward.

Defining Dyslexia

24

“When I use a word,” Humpty Dumpty said,

in rather a scornful tone, “it means just what I choose it to

mean - neither more nor less.”

From “Through the Looking Glass”

by Lewis Carroll

“The question is,” said Alice, “whether you can

make words mean different things.”


by Lewis Carroll

25

“The question is,” said Humpty Dumpty,

“which is to be master – that’s all.”


by Lewis Carroll

6 26

7

Who created it? – Who can create a definition?

The answer is ANYBODY.

The Oxford English Dictionary was developed by using a massive survey of the uses of a given word, and publishes uses ranked by popularity, quoting an example and the source. What we normally see is a cut-down version done by independent people with no vested interest.

Wikipedia may be argued to be more widely accessible but less authoritative since the most prominent definition will be pushed forward by the most vocal, not the most authoritative.

The Basics

27

What authority do they have? - Why is authority important?

Authority itself is not important. What is important is whether or not we accept that authority.

If you asked the International Dyslexia Association who had written the most authorative work on dyslexia before World War 2, they would (probably) say Sam Orton. If you ask me, I would say Pal Ranschburg.

If you cannot question the author of the response, how do you decide who to believe?

The Basics

We make assumptions about the credibility of responses and the responders based on our experience that may be unrelated to the subject. Respect and reverence may carry more weight than logic.

Ranschburg P (1916) Die Leseschwächel Legasthenie und Rechnenschwäche Artihmasthenie der Schulkinder im Lichte des Experiments. In Heller Th Und Leubuscher. G ZwangloseAbhandlungen aus den Grenzgebieten der Pädagogik undMedizin. Berlin: Heft.

Orton S (1937) Reading, Writing and Speech Problems in Children: A presentation of certain types of disorders in the development of the language facility. New York: W.W. Norton.

The Basics

28

Should it be accepted? – Who can say if it is acceptable?

ONLY THE FUNDER!

It does not matter how much we argue, if the funder does not agree with the definition (and justifies their decision in the eyes of the governing authority) then they are the ones that make the decision.

Example – The persistence of IQ in assessments.

The Basics

British Psychological Society

World Health Organisation

British Dyslexia Association

Health Organisation of the Netherlands

NICHD

International Dyslexia Association

Ian Smythe ?

Why do you choose that “authority”?

Because it matches your needs?

Because it take greater heed of latest thinking and research?

Who do you believe?

29

The definition on the www.ditt-online.org website (access date 4 April 2008) states:

The World Health Organisation (WHO) has the following definition of dyslexia in two of it's publications,

ICD-10, The International Statistical Classification of Diseases and Related Health Problems, tenth revisionICIDH-2, The International Classification of Impairments, Activities, and Participation

"A disorder manifested by difficulty learning to read, despite conventional instruction, adequate intelligence and sociocultural opportunity. It is dependent upon fundamental cognitive disabilities which are frequently of constitutional origin".

Myths of definitions

This myth has been widely perpetuated because people do not check.

This is identical wording attributed to Critchley of the World Neurological Foundation (Critchley, M. (1970) The Dyslexic Child, London, Heinemann. Page 11 cited at for example the Open University http://labspace.open.ac.uk/mod/resource/view.php?id=188602

Using the search tool on the World Health Authority website, if you put in dyslexia, you will not find a separate entry for it. However, it will lead to a page that talks about F81.0 Specific reading disorder F81.1 Specific spelling disorder


30

F81.0 Specific reading disorderIncludes: "backward reading" developmental dyslexia specific reading retardation spelling difficulties associated with a reading disorder

Excludes: acquired alexia and dyslexia (R48.0) acquired reading difficulties secondary to emotional disturbance

F93) spelling disorder not associated with reading difficulties

F81.1 Specific spelling disorderIncludes: specific spelling retardation (without reading disorder)Excludes: acquired spelling disorder (R48.8) spelling difficulties associated with a reading disorder (F81.0) spelling difficulties mainly attributable to inadequate teaching


There are many arguments about the medical and educational approach to dyslexia.

In many countries there are no specialist services, and the only ones showing any interest are medical practitioners.

However, the intervention is educational, not medical. Therefore it would seem logical that the reference point should be educational and not medical.

The error of DITT-Online was pointed out to them in July 2007. Their website remains unchanged.

Who do you believe? Medical or Educational

31

Robinsaon (1950) suggests the reasons to provide a definition include not only how a word should be used, but also provide a set of conditions in which something occurs.

With reference to dyslexia, Miles (1995) included:

• giving a guide to diagnosis

• finding a watertight legal description that will automatically give entitlement to special help or provision

• showing off one’s pet theory and trying to impose it on others.

Defining definitions

Without it we don’t know what we are talking about – see the International Terminology Survey 2007 (Siegel et al).

The Health Council of the Netherlands produced a series of criteria that they would use to determine the acceptability of a definition of dyslexia

a) it should be descriptive with no explanatory elements

b) specific enough to identify dyslexia within the whole of reading and spelling problems

c) general enough to allow for various scientific explanatory models and any developments those models might undergo

d) operationalizable for the purposes of research into people and groups

e) directive for statements concerning the need for intervention

f) applicable to the various groups involved.


32

Russia

UK

Italy

Poland

International terminology

If a Greek wished to specify the simple act of reading difficulties they would used the term ‘anagnosasthenia’ (Critchley & Critchley, 1978).

For “dyslexia” the Hong Kong government uses the term “reading and writing difficulties”.

This means that the translation of “Dyslexia is a reading and writing difficulty” would be “Reading and writing difficulties is a reading and writing difficulties.”

International terminology

33

Why do we need a definition?

To provide help and support an individual, we need to identify “characteristics, interests, abilities and learning needs.” (Salamanca, 1994)

But to do that, we do not need a definition.

However, if the funder (e.g. government) says diagnosis to a label of dyslexia is required, then a definition is necessary.


Why do we need a definition?

To provide help and support an individual, we need to identify “characteristics, interests, abilities and learning needs.” (Salamanca, 1994)

But to do that, we do not need a definition.

However, if the funder (e.g. government) says diagnosis to a label of dyslexia is required, then a definition is necessary.


34

What the definition does not tell you

It does not tell you the tools to use to identify needsWho can say that? – See Assessment section

It does not state the cut off criteria.Who can set that? – See Assessment section

Therefore, there are two types of assessment:Assessment to a labelAssessment of needs

Only one requires a definition.


Stanovich (1992) noted that definitions of dyslexia may serve many different purposes, and conceptualised the differences as follows:

for scientific purposes, whereby assumptions and results may be judged by research criteria

for school personnel whereby additional services may be provided for low achievers

for parent groups who will use a definition for advocacy in resource allocation within the legislation.

To this should be added dyslexics themselves.

Who needs definitions?

35

Robinson (1950) suggests the reasons to provide a definition include not only how a word should be used, but also provide a set of conditions in which something occurs.

With reference to dyslexia, Miles (1995) included:

• giving a guide to diagnosis

• finding a watertight legal description that will automatically give entitlement to special help or provision

• showing off one’s pet theory and trying to impose it on others.

Note that Popper would suggest that any pet theory should be a testable hypothesis.

On content

Definition

How the word is used and provide a set of conditions in which something occurs.

a

Defining the definition

36

Square ?

Defining the definition

What are the characteristics that define the square?

Defining the square

37

4

Defining the square

4

Equal

Defining the square

38

4

90°

Equal

Defining the square

4

90°

Equal

Closed

Defining the square

39

Square

An object that has four sides

of equal length, corners each of 90°

and is closed.

Defining the square

Dyslexia ?

Defining dyslexia

40

Games?

Defining dyslexia

Games

Board games(Chess, Solitaire, Monopoly)

Card games(Snap, Poker, Brag)

Team ball games(football, rugby, cricket)

Throwing a ball against a wall

Defining dyslexia

In his review of concepts with respect to games Wittgenstein (1953) refers to “family resemblance” rather than specific properties. However, this notion of overlapping similarities may seem more appropriate for dyslexia than a classical interpretation of a concept.

41

1 = Rarely 2 = Occasionally 3 = Frequently 4 = Most of the time

Individual differences

Symptom based - identifies characteristics that are used as defining properties

Criterion based – suggests an understanding of underlying causes. Whilst these may be in dispute, Popper’s (1959) view of scientific research would suggest that the causal definition is acceptable if it is seen as a working hypothesis, which is open to scrutiny and to possible disproof.

Prognosis based - In order to be a prognosis definition, dyslexia would need to be defined, at least in part, on the basis of response to intervention.

Types of definitions

42

Response to intervention definitions suggest how a child may respond to given support. I.e. those who do not respond to this extra tuition/resources are the ones who may be classifies as dyslexia.

Although this is often criticised as it is a failure model, it may also be reasoned that assessment of symptoms is also usually a response to failure.

Prognosis based definitions

Health Council of the Netherlands (1997) - Dyslexia is present when the automatization of word identification (reading) and/or spelling does not develop or does so very incompletely or with great difficulty.

British Psychological Association (1999) - Dyslexia is evident when accurate and fluent word reading and/or spelling develops very incompletely or with great difficulty

IDA/NICHD (2002) - Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities.

Towards a (symptom based) definition

43

Dyslexia is a difficulty in the acquisition of accurate and/or fluent word reading, spelling and writing that is neurological in origin.

Defining dyslexia (Smythe, 2006)


It may be caused by a combination of difficulties in auditory and visual processing, working memory, and analysis, synthesis and storage in the orthographic and phonological lexica. The semantic and motor systems may also be implicated.


44

An international model of reading

An international model of assessment

An international model of support

Modeling reading (Smythe, 2006)

Dyspraxia

Dyslexia

ADHD

DyscalculiaDyspraphia

Cognitive dysfunction and comorbidity

45


It may be caused by a combination of difficulties in auditory and visual processing, working memory, and analysis, synthesis and storage in the orthographic and phonological lexica. The semantic and motor systems may also be implicated.

The manifestation of dyslexia in any individual will depend upon not only individual cognitive differences, but also the language used.


Cognitive predictors of reading in different languages

Arabic Chinese English Hungarian Portuguese

Visual

Sound discrimination

Phonological awareness

Phonological memory

Phonological access

Phonological decoding

0%

25%

50%

75%

Diszlexiaveszélyeztetettség46

Dyslexia is a difficulty in the acquisition of fluent and accurate reading and writing that is neurological in origin.

Ian Smythe, 2005

Dyslexia is a difference in acquiring reading, spelling and writing skills, that is neurological in origin.

European Dyslexia Association, 2007


A difficulty in the acquisition of

accurate and/or fluent word reading, spelling

and writing.Dyslexia

Defining dyslexia

47



and writing.Dyslexia

Defining dyslexia

Defining dyslexia

48



and writing, tying shoe laces, reading maps, getting ideas down on paper etc.

Dyslexic

Defining dyslexia

NICHD/IDA

Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge."

Defining dyslexia

49

…. unexpected in relation to other cognitive abilities ……

Defining dyslexia

IQ

Reading achievement

Logic and IQ

If it is not in the definition, then to provide the label you do not have to test it.

If IQ does not predict reading, then how can you claim that they are below “expectation.”

Logic and intelligence

50

NICHD/IDA

Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge."

Defining dyslexia

SpLD Working Group 2005/DfES GuidelinesAssessment of Dyslexia, Dyspraxia, Dyscalculia and Attention Deficit Disorder (ADD) in Higher Education

“For the purpose of this guidance we have chosen to use more general descriptions of each specific learning difficulty rather than select from the many working definitions putting emphasis on differing aspects of the conditions.”

“Marked and persistent weaknesses may be identified in working memory, speed of processing, sequencing skills, auditory and /or visual perception, spoken language and motor skills.”

There is no mention of “phonological” difficulties.

“Defining” dyslexia

51

Criteria-led definition are sometimes used, particularly for resource allocation. An example of a criteria led symptom definition is ICD-10 “Diagnostic Criteria for the Diagnosis of Specific Reading Disorder” (Diagnostic Criteria for Research) (WHO, 1993).

“A score on reading accuracy and/or comprehension that is at least 2 standard errors of prediction below the level expected on the basis of the child’s chronological age and general intelligence, with both reading skills and IQ assessed in an individually administered test standardized for the child’s culture and educational system.“

But who says that 2 standard errors is the right criterion?

Criterion based definitions

Statistically, 2.28% of any given population will be two standard deviations or more below the mean in a normal distribution. (Snowling, 2000)

Yule et al (1974) calculated that 3.1% of 10 year olds on the Isle of Wight had a “specific reading retardation”, assessed by using a discrepancy between IQ and reading accuracy as their criterion, compared to 6.3% in London. If reading comprehension is used, these figures rise to 3.6% and 9.3%.

But how does one set the criteria?

Yule WM, Rutter M, Berger M, and Thompson J (1974) Over- and under-achievement in reading: Distribution in the general population. British Journal of Educational Psychology 44, 1-12.

Implications on changing the cut-off criteria

52

Statistically, 2.28% of any given population will be two standard deviations or more below the mean in a normal distribution. (Snowling, 2000)

Rodgers (1983) reported a figure of 2.29% using a reading test purported to be an improvement over those used by Yule et al.

But are the results a consequence of “improvements” or just different criteria?

Implications on changing the cut-off criteria

DyslexicNon-dyslexic

Criterion based definitions

53

阅读障碍是由神经因素引起的一种障碍，主要表现在不能够正确的或顺利的读，拼

和写


Dysleksja to trudności

w opanowaniu

poprawnego i/lub

płynnego czytania,

ortografii i pisania.

A diszlexia az írás-olvasási készségekelsajátításabelineurológiai eredetűnehézségeket jelenti.

Дислексията е

затруднение при

овладяване на

грамотността. Има

неврологичен

произход.

ディスレクシアとは読み書き、綴りなどの習得の困難を

しめす

62

[email protected]

54

Atypical (But Natural) Neurodevelopmental

Variation as a Basis for Thinking About Dyslexia and LD

Jeffrey W. GilgerPurdue University

[email protected]

World Summit on Learning DisabilitiesLake Louise, Canada2008

Three Central Points of This Presentation(relevant to definition, practice and research)

• Distinct disorders vs. broad symptomology

• Genes for LD and the issue of discriminate validity

• The neurodevelopmental paradox of

• the gifted & LD child

55

Different Developmental or Learning Disorders

Reading Attention and/or Activity Math Language Writing Memory Nonverbal Autism Spectrum Coordination Disorder Other

How We Started Out

Demonet, J. F., Taylor, M. J., & Chaix, Y. (2004). Developmental dyslexia. Lancet, 363, 1451-1460.

56

The Nature and Manifestation of RD

•It Is… (ala Annals of Dyslexia, 2003 working group)

•Primarily a language-based disorder (phonological awareness/processing)

•Neurological in origin (left inferior frontal, inferior temporal-occipital, temporal-parietal)

•In part, neurodevelopmental in origin (disorganized neural pathways, atypical cortical cell connection, gross and fine structural formations different from controls, etc.)

•In part, genetic, with specific risk genes (moderate h2, replicated linkages to specific genes or chromosomal sites)

The Nature and Manifestation of RD

•It Is Also…

•Complicated with variable manifestations (variable cognitive component profiles within the affected person, degree of severity, age-related changes, etc.)

•Heterogeneous with possible multiple routes to reading weaknesses (dual, three-way, etc. routes to a reading-related problem, visual vs. phonological attributes, etc.)

•Associated with other traits due to common neural and genetic pathways (significantly correlated with other phenotypes, significant rg with other neurocognitive traits, demonstrated overlapping brain areas, shared linkages for ADD, DCD, SSD, Memory, Autism Spectrum, SLI, Spelling, Writing, Immunity-related Factors, etc.)

57

Thus, There are Some Essential Problems (or Discoveries) in Phenotyping Reading-Related Disorders

The frequency of overlapping disorders (comorbidity)

Consideration of categorical vs. continuous definitions

Apparent genetic and environmental etiologic variability

Unclear or variable neural and cognitive networks resulting in the phenotype

Variable or diffuse neuroanatomy that is implicitly tied to etiology and expression

“New” thinking might be needed…

Issue 1: Distinct Disorders vs. Broad Symptomology

Studies of LD/RD “Comorbidity”

Comorbidity is high

Comorbidity is often the rule and not the exception

Comorbidity implies independent disorders

Comorbidity may be an expression of symptoms of a diffusely atypical brain

ET1 R + T

ET = Etiology; R = RD; T = Trait58


Correlated Phenotypes: The Brain of RD Individuals is Diffusely Atypical


Molecular Genetic Studies of LD/RD “Comorbidity”

Usually limited to 2 disorder- traits or triads (e.g., ADHD & RD & SSD)

Common Etiology

ET1ET2

ET3

ET1

Etiologic Subtype

R + T

R + T

T

R

ET = Etiology; R = RD; T = Trait

59

Comorbidity or the Issue of Correlated Phenotypes

Behavioral genetic work in psychology and psychiatry suggests that specific cognitive and personality traits are often correlated and this correlation is at least in part genetic in nature. Commonly there is a general genetic factor that along with specialized genetic factors yield trait variance (e.g., Rutter et al., 1999a & b, J Ch Psy& Psych)

Comorbidity or the Issue of Correlated Phenotypes (Px

and Py)

Even traits with small phenotypic correlations can have high geneticcorrelations rG. Genetic correlations depend on the degree of bivariate h2

which is constrained be the independent h2s of the traits.

a b c dRD .50 .70 .10 .20

a = ADD; b = enjoyment of reading; c = divergent thinking; d = cortical volume

e.g., fluency

e.g., verbal memory

correlation

Shared genetic influence

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Comorbidity or the Issue of Correlated Phenotypes

Conclusions

1. Comorbidity can be high

2. Comorbidity may not be the best term to use

3. Many correlated traits (not examined)

4. Even if neurodevelopmental genes are specialized

-commonly they will have broad primary effects if active early on, and secondary effects later

-in the continuum of the typical, there are no specific genes for specific cognitive disorders that have limited specific effects unless part of a true disease

-primary genes may effect primary areas, but interactions can give rise to broader symptoms

Issue 2: Genes for LD and the Question of Discriminate Validity

61


“…A (scientifically necessary) criterion imposed on a measure of a construct requiring that it not correlate too highly with measures from which it is supposed to differ...”

E.g. Standardized reading measures; various medical & psychiatric diagnostic measures; etc.

adhd

rd

Risk test

80%

10%


Trait X

rd20%

??

62


Chromosome 1 Chromosome 2 Chromosome 3 Chromosome 6 Chromosome 7 Chromosome 13 Chromosome 15 Chromosome 16 Chromosome 18 Chromosome 19 Chromosome X Gene associations to specific cognitive traits

Summary of Molecular Searches

Promising Gene Linkages and Gene Candidates

Chromosome 3:

ROBO1: Axon guidance, across midline and hemispheres

Chromosome 6:

DCDC2: Neuronal migration to cortex, expressed in thalamus as well

Chromosome 15

DYX1C1: Expressed in brain


With rare exception, such genes or markers are referred to as “RD Risk Genes”, “RD Alleles”, “Genes for RD”. Etc.

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Table 1: Genes and Dyslexia Phenotype Linkage

Reference Dyslexia Phenotype Region

Fisher et al., 2002 SW Rdg, Phonol processing, Ortho Processing 18p11.2 Phoneme Awareness

Fisher et al., 2002 SW Rdg, Spell, Phono Awareness, Phono Decod Xq27.3 Ortho Cod, Ortho Processing

Igo et al., 2006 RW Rdg 13

Newbury et al., 2005 Review of Phonol ST Memory & SLI 16

The SLI Consortium, 2002 Express & Recept Lang, Phono ST Memory 16q & 19qNonW Rep, IQ

Raskind et al., 2005 Phonol Decod, NonW Rep 2q

Grigorenko et al. 2001 Rdg & Verbal Ability 1p36

Fagerheim et al., 1999 Ortho, Phono, Rdg, Spell 2p16-p15


20

Conclusions

Susceptibility Alleles; LD Genes; Etc.

Genes for Atypical Brain Development & Function

Old

New

64

Normal Continuum of Measured Learning Abilities

RD

Medical Model

?!

Expected Atypical Brain Development

2x Exceptional

3-5%

Issue 3: The Neurodevelopmental Paradox of the Gifted LD Child

Even Gifted People Have “Issues”

65

Myths and Anecdotes Abound About Gifts and Twice Exceptionality

Misinterpretation of theory

Misinterpretation of data

Well intended bias

Self serving drive

Misrepresentation in literature

Lack of Science!

Are There Any “Unexpected” GiftedDyslexics Anyway?

Multiplicative “law” of independent probabilities

Base rate of RD = 7%

Base rate of Gifted IQ = 5%

Expected rates if the two conditions are independent = .07 * .05 = .0035 or < 1.0%

= .12 * .05 = .006 or < 1.0%

= .60 * .05 = .03 or 3.0%

= .30 * .10 = .03 or 3.0%

Etc…

Rate in Population = 3-5% 66

40

V=123P=141

41

V=102P=117

14

V=89P=120

11

V=99P=129

8

V=98P=147

6

V=99P=125

Unaffected – No linguistic deficit

RD status unclear

RD/Verbal Deficit

V = Verbal IQ

P = Performance IQ

Line Responsible

see Craggs et al., 2006, CortexExample: Funded by APA, NIH

Curved arrows indicate horizontal portion of the planum temporale. Straight arrows indicate the Post Central Sulcus (POCS)

a.

Ste

inm

etz

Ty

pe

I;

b.

Ste

inm

etz

Ty

pe

II;

c.

Ste

inm

etz

Ty

pe

III

; an

d,

d.

Ste

inm

etz

Ty

pe

IV

.

67

Witelson, et al., Lancet, 1999

Implications of Morphologies

Gross neurological morphology reflects the developmental organization of microstructures, neuronal migration, and cell connection

These structures are related to brain function

The brains of these people do not look like the brains of normal individuals or of the average individual that has rd alone

The brains of these individuals show morphologies known to develop in or around the second trimester and they are not modifiable afterwards

The morphologies we observed, especially those in the parietal area, resembled the unique morphologies previously documented in an anatomical study of einstein’s brain

68

Male 14 Left = Type I

Male 14 Right = Type IV

69

Issue 3: The Neurodevelopmental Paradox of the Gifted LD Child

Conclusions…

Recall that small phenotypic correlations can have huge rG

In-utero Effects on the Developing Brain

Genetics

Neurology

Environment

Risk

Nonverbal Abilities Over Verbal Abilities

Interaction

RD

Hi NVIQ

70

Modify the structure or function here

Modify the structure or function here as well?

Left Right

Disease Model ABD Model

General Conclusions

• There are challenges for current practices• Molecular genetic approaches need to be reconciled better with the

literature in quantitative genetics that shows, clearly, that multivariate approaches are valid and reflect the reality of the functioning brain

• Authors should be cautious how they talk about genes. Other names may include “ABD Genes”, etc.

• The word “atypical” simply means deviating to some degree on either side of the hypothetical norm of neural development or function or expressed and measured ability

• Natural variation and ABD genes putting people at risk for RD may also yield some unique brains with above average capabilities to process, encode and produce information

• Dynamic research process between the common and necessary approach to the study of RD and the equally important and broader perspective advocated here. Note that both approaches are called for and each can advise the other…

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Atypical (But Natural) Neurodevelopmental Variationas a Basis for Thinking About Dyslexia and LD

Model-Specific or Hypothesis-Driven

Studies of Brain, Behavior & Genetics

Multivariate “Whole Brain” Model-Driven

Studies of Brain, Behavior & Genetics

Understanding of Trait or Disorder Specific

Networks: Grasp of Interactive Brain &

Biological Functions

Understanding of Natural Variation & Brain Diversity

ReferencesContact: Jeff Gilger, [email protected]

Craggs, J. Sanchez, J., Kibby, M., Gilger, J. & Hynd, G. (2006). Brain morphological and neuropsychological profiles of a family displaying superior nonverbal intelligence and dyslexia. Cortex, 42, 1107-1118.

Rhee, S., Hewitt, J., Corley, R., Willicut, E. & Pennington, B. (2005). Testing hypotheses regarding the causes of comorbidity: Examining the underlying deficits of comorbid disorders. J. Abnormal Psychology, 114, 346-362.

Ramus, F. Neurobiology of dyslexia: A reinterpretation of the data. TINS, 27, 720-726. Smalley, S., Loo, S., Yang, M. & Cantor, R. (2004). Towards localizing genes for cerebral asymmetry and mental health.

Am. J Medical Genetics (Neuropsychiatric Genetics), 135, 79-84. McCandiss, B. & Noble, K. The development of reading impairment: A cognitive neuroscience model. Mental

Retardation and Dev Dis Res Rev, 9, 196-205. Smith, S.D. & Gilger, J.W. (2007). Dyslexia and other language/learning disorders. In Rimoin, Connor, Pyeritz & Korf

(Eds.; 5th edition), Emory and Rimoin's Principles and Practices in Medical Genetics. Livingstone Churchill: NY. Gilger, J.W. & Kaplan, B. (2001). The neuropsychology of dyslexia: The concept of Atypical Brain Development.

Developmental Neuropsychology, 20 (2) 465-481. Gilger, J. (in press). Some Special Issues Concerning the Genetics of Dyslexia: Rethinking Multivariate Profiles,

Comorbidities, and Genetic Correlations. Chapter in the Handbook of Dyslexia, edited by A. Fawcett, F. Manis, G. Reid and L. Seigel, Sage Publications.

Gilger, J. & Hynd, G. . (in press). Atypical Natural Neurodevelopmental Variation as a Basis for Thinking About the Gifted Dyslexic. Roeper Review

Korol et al. (2001). Enhanced efficiency of quantitative trait loci mapping analysis based on multivariate complexes of quantitative traits. Genetics, 157, 1789–1803.

Loo et al. (2004). Genome wide scan of reading ability in affected sibling pairs with attention deficit hyperactivity disorder: Unique and shared genetic effects. Mol Psych, 9, 485-493.

Rutter et al., 1999a & b, J Ch Psy & Psych Witelson, et al., Lancet, 1999 Steinmetz et al., 1990, Br and Lang Demonet, J. F., Taylor, M. J., & Chaix, Y. (2004). Developmental dyslexia. Lancet, 363, 1451-1460

72

Thank You…Learning Disabilities is Rocket Science!

“It’s time we face facts, men.

We’re not exactly rocket scientists…”

Atypical (But Natural) Neurodevelopmental

Variation as a Basis for Thinking About Dyslexia and LD

Jeffrey W. GilgerPurdue University

[email protected]

World Summit on Learning DisabilitiesLake Louise, Canada2008

73

Foothills Academy Society

2008 World Summit on Learning Disabilities

Lake Louise, Alberta, Canada

Mental Health and Learning

Disabilities Through the Life Span

Jim Koller, Ph.D.

Professor and Director

Center for the Advancement of Mental Health Practices in Schools

Department of Educational, School, and Counseling Psychology

University of Missouri

Columbia, Missouri USA

Basic Facts of Life

• Learning Disabilities DO exist

• Individuals with LD DO have similar wants, needs and desires as anyone else

• Personality factors DO impact adjustment

• One goal of education and of life is to secure and sustain gainful employment

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Mental Health Facts• 22% of adolescents and adults have a diagnosable mental

illness in any one year.

▫ Depression 11.5%

▫ Anxiety 15.3%

▫ PTSD 4.6% (NIMH, 2005)

• Basic structure of personality established by age 4.

▫ Children vulnerable to onset of mental illness

▫ 50% of all lifetime problems of mental illness begin by age 14.

▫ 86.4% of adults will have lifetime problems finding and sustaining a fulfilling job (RSA, 2003).

• In U.S. 9.9% of youths ages 12-17 are active drug users.

Interaction of Learning Disabilities and

Social-Emotional Concerns

• Learning disabilities often lead to social emotional distress

• Learning disabilities often raise or exacerbate existing social emotional concerns

• Social emotional issues often mask an individuals learning disability

• Social emotional issues often exacerbate learning disability

• Social emotional health often enhances the performance of individuals with learning disabilities (Koller, 2005)

75

Developmental NVLD Indicators of

Psychopathology

• Preschool – behaviors relatively typical of age, mild deficits

• Elementary into Middle School – emerging manifestations of externalizing deficits (inattentive, oppositional)

• Early into Late Adolescence – emerging manifestations of internalizing deficits (withdrawal, anxiety, depression, social skill deficits)

• Adulthood – Personal/social deficits continue into employment and life

(Rourke, 2005; Koller, 2004, 2006)

Increasing Societal Problems

• 465% increase in adolescent gambling (UD, 2005)

• 1.5 million children per year experience effects of parental divorce (Wallerstein, 2005)

• 1.4 million middle school children smoke before going to school (CDC, 2003)

• Children who share a home with an unrelated adult are 50 times more likely to die of abuse (Schnitzer, 2006)

76

Increasing Societal Problems (continued)

• Sandwich parents (NIH, 2005)• National school dropout rate continues • (GEDTS, 2006)• Predisposing factors predictive of a greater risk

for developing mental illness: Poverty Exposure to environmental toxins Exposure to traumatic events Presence of mental illness in a parent SLD ADHD (NIHCM, 2005)

U.S. National Census Data Facts

• 34 million adults over 18 years (16% of entire population) did not complete high school education

• 27 million adults estimated to have a 9th grade education

• High LD drop out rate from school (17-42%)

• Minimal estimate of 4 million adults with LD (12%) are in need of high school equivalency certificate

• Without high school diploma or GED certificate the opportunity to access post-secondary education and secure meaningful employment is remote

(GEDTS, 2002; RSA, 2004)

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Suicide • Students in the 9th grade have the highest rate of

considering suicide (CDC, 2005)• Mood disorders, including depression, have

consistently been found to have a stronger association with suicide than any other mental disorder.

• 90% of children who complete suicide have a mental disorder before their death (Shaffer & Craft, 1999), the most common of which is a mood disorder (Shaffer, et al., 1996).

Mental Health

• Mental Health is not just the absence of mental illness but the individual’s state of psychological well-being and ability to adapt, accommodate, and be resilient to life’s everyday demands.

78

Pass Rates for GED in Canada

(GEDTS 2002, 2005)

Reasons Why Canadian GED

Passers Took the GED Tests

(GEDTS 2002, 2005) 79

The Right of Learning Disabled Students to Meaningful Access

Implications of Recent Court Decisions for Learning Disabled Students,

Governments, and School Systems

Dr. Yude Henteleff, Pitblado LLP2008 World Summit on Learning Disabilities

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81

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83

84

85

86

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THE RIGHT OF LEARNING DISABLED STUDENTS TO MEANINGFUL

ACCESS -

Implication of Recent Court Decisions for Learning Disabled

Students,

Governments and School Systems

Presented by Yude M. Henteleff, C.M., Q.C., LL.D. (Hons.) To the World Summit on Learning Disabilities 2008,

April 14-16, 2008 Lake Louise, Alberta

The comments contained in this paper are personal to Yude M. Henteleff, C.M., Q.C., LL.D. (Hons.), Winnipeg, Manitoba, Canada and were made for the sole purpose of presentation to the World Summit on Learning Disabilities, April, 2008 and is not to be distributed to any other party or made use of without acknowledging the source.

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I. INTRODUCTION................................................................................................................ 3

II. THE RIGHT TO EQUALITY - The Canadian Charter of Rights and Freedoms................... 6

III. SECTION 1 OF THE CHARTER: DEFENCE TO BREACH OF SEC. 15(1) OF THE CHARTER ................................................................................................................................. 8

IV. CONTINUING RESPONSIBILITY OF GOVERNMENT ...................................................... 9

V. MEANING OF DISCRIMINATION .....................................................................................11

VI. IMPORTANCE OF AN APPROPRIATE EDUCATION.......................................................12

VII. THE BEST INTEREST OF THE CHILD.............................................................................12

VIII. THE RIGHT TO RECEIVE SERVICES ASSURING MEANINGFUL ACCESS...................14

IX. EQUAL ENTITLEMENT TO SERVICES............................................................................18

X. PROPORTIONALITY IN ACTIONS BY GOVERNMENT ...................................................19

XI. UNDUE HARDSHIP AS A JUSTIFIABLE REASON FOR NOT PROVIDING REASONABLE ACCOMMODATION .................................................................................................................20

XII. SUMMARY........................................................................................................................24

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I. INTRODUCTION

Today I will only touch on one aspect of what I have just described, namely the Canadian Charter of Rights and Freedoms and certain of the judgments of the courts of our land that have applied the Charter in order to meet the needs of those who are most in need of protection in our society.

As a general rule a decision by a court is based on the facts of the particular case and the law which applies to those set of facts. The law is found either within relevant legislation or as determined by the court under the common law - that is law by precedent under the British common law.

A court decision is therefore only subsequently useful in similar fact situations unless one argues relevance by analogy. General application of a specific case decision is therefore generally quite limited.

There are decisions, however, which transcend the particular facts of a particular case and become one which has general application to a broad issue of wide application in the community. The courts, however, can either diminish or expand what it had previously determined as being the applicable law in an earlier case.

Such is the case where issues emerge in a particular fact situation, which are systemic in nature. That is, they have an effect far and beyond the individual who initiated the proceedings and remedies can be claimed not only in respect to the individual but in respect to all like individuals similarly situated and affected. In other words, remedies are sought from the court which have a much broader effect then that claimed by the individual her/himself.

However, there are very few decisions in Canada about systemic discrimination as was noted in a February 2008 decision by British Columbia Human Rights Tribunal re C.A.W. - Local 111 as the complainant and Coast Mountain Bus Company as the respondent. I will refer to this decision very briefly later in this presentation.

There are few decisions about systemic discrimination in the field of education, generally and learning disabilities in particular and that is why the Moore case, which is now under appeal to the British Columbia Court of Appeal, looms so large.

Every person born in this world represents something new, something that never existed before, something unique. Every person's earnest wish, and indeed their legal entitlement, is to have that uniqueness respected and effectively responded to so that they can realize their fullest potential. The essence of justice for all is the recognition of the infinite worth of every person.1

As a world community we have built edifices of hope such as the United Nations. That hope meant the realization by all humans of respect, fairness, justice, equity, dignity, equality, economic rights and the like. Over the past 50 years few of these dreams have been made real. In some nations discrimination has significantly subsided, real access to equality has taken hold and justice has flourished. For so many others, hope has crumbled as the most basic of human 1 Yude M. Henteleff excerpt from a paper presented to the University of British Columbia Inter-Professional Continuing Education, Second National Bi-Annual Fetal Alcohol Spectrum Disorder Conference, Vancouver, BC 2006, [email protected]

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rights have evaporated or in some cases never taken hold. In these nations rights remain at best "paper rights" found in such nations constitution and laws, but not in practice.

Examination of recent court decisions in Canada and their relevance to the human rights achievement by special needs individuals in this country will in large part be an examination of the Canada Charter of Rights and Freedoms and its consequences for the individual and the collective in Canada. It is a human rights story and like many stories reflects a panorama of human expression. It is a significant part of the story of human rights achievement in Canada. My objective in exploring these developments of the law in Canada is that we can learn lessons from it in our search for equality for all and hopefully it will be useful to those beyond our borders.

In my view, the effectiveness of every human rights law must be measured by its degree of success in protecting those who are the most vulnerable and who are the least capable of advancing and protecting their own rights. History tells us that it is the actual experiences of the disabled and their ability to access real equality within society that is often the best barometer of whether paper rights are practiced rights.

As compared to advances made by other groups in society that were traditionally subject to discrimination and have achieved some degree of equality, children with special needs in Canada have fared quite badly. One would think that the most vulnerable and dependent members of Canadian society would have achieved the greatest of progress particularly in the education system. In fact the reverse is the case as is made evident by the following. They represent only a few of the many critical commentaries.

On October 27, 2003 the Ontario Human Rights Commission Consultation Report called "The Opportunity to Succeed: Achieving Barrier-Free Education for Students with Disabilities"2 was released. Keith Norton, then Chief Commissioner of the Ontario Human Rights Commission, made the following remarks announcing the release of the report. He challenged education providers to remove barriers that prevent students with disabilities from receiving the full benefit of their education. He stated:

"Every individual in Ontario should have the same opportunity to succeed. Unfortunately, this is not happening. Many children are missing out on the chance to learn vital skills because of inadequate funding, physical inaccessibility, cumbersome and time consuming accommodation processes, and negative attitudes and stereotypes towards children with disabilities." (my emphasis)

The report detailed the actions required to remedy the barriers faced by students with disabilities seeking accommodation of their disabilities in elementary, secondary and post-secondary schools throughout Ontario. Mr. Norton added by stating:

"Until all players responsible for the accommodation of students with disabilities accept their responsibility, the goal of providing these students with the necessary education necessary for them to reach their potential will remain elusive."

There have been many like reports including that by the Canadian Coalition for the Rights of Children whose 2003 report "Systemic Violation in Canada of Children's Rights" forms part of its

2 "The Opportunity to Succeed: Achieving Barrier-Free Education for Students with Disabilities", Ontario Human Rights Commission Consultation Report, online: Ontario Human Rights Commission <www.ohrc.on.ca>

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response to Canada's report to the United Nations as to its progress in achieving the objectives set out in the U.N. Covenant of the Rights of the Child. The Coalition particularly emphasized that aboriginal children and children with disabilities were found to be particularly at risk.3

The need for the required supports and services amongst Canadians with disabilities and particularly those with learning disabilities is well documented in Canada. A survey was conducted in that regard by the Canadian Council on Social Development Disability Information Sheet No. 174 in 2005. It notes that among children, the most commonly required aids/devices and which are rarely met are those related to learning disabilities, such as specialized computers, tutors, recording equipment, talking books and spell check.

A further report titled "Disability Supports Required in Canada for Children with Disabilities aged 5 - 14: Needs and Gaps"5 was also published in 2005. This report emphasized the extent to which required accommodation is fully met, partially met, and fully unmet. The report noted that in terms of sheer numbers, the greatest requirement for aids and devices comes from those with learning disabilities and are only partially met.

The Globe and Mail in its Monday, February 25, 2008 edition noted in an editorial that the failure to care for mentally ill youths in New Brunswick suggests a medieval approach to their treatment. Bernard Richard, New Brunswicks' Child and Youth Advocate, commenting on this state of affairs stated that over and over teenagers with severe mental illness or disabilities and their families are not receiving the services they need. The editorial notes that these children end up in court and then in youth jails, so often an inappropriate environment and are thrust into a world straight out of Dickens.

This is not a situation common only to New Brunswick. It is therefore critical to examine those decisions the Supreme Court of Canada which have dealt with like issues and why these decisions have not been respected and followed by child and youth service systems.

Decisions of the Supreme Court of Canada over the past number of years note that equality means that every individual in Canada is entitled to the protection of the rights provided by Section 15(1) of the Charter and yet the gap between need and fulfilling them is huge. The realization of such rights are indispensable to the dignity, integrity and security of children with special needs.

In October 1998, the late Brian Dixon, former Chief Justice of the Supreme Court of Canada stated:

"It may be in the short term financial interests of a government to require people with disabilities to litigate the removal of every barrier. As a group they are generally poor. Legal aid resources are in scarce supply. But such an approach would not only place an impossible strain on these resources it would also put a strain on the moral authority of the Courts. When the Supreme Court of Canada has spoken it should not have to repeat itself…thus when the Courts have spoken as they clearly have it brings justice into disrepute to disregard what they are saying." (my emphasis)

3 "Canada and the Rights of Children: 2003 Review of Canada's Record", Canadian Coalition for the Rights of Children, online: <www.rightsofchildren.ca> 4 Disability Research Information Page, http://www.ccsd.ca/drip/research/ (Accessed Feb. 28, 2007) 5 Benefits and Services for Persons with Disabilities, http://www.socialunion.ca/pwd/part2.html (Accessed Feb. 28, 2007)

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The realization of the right to equality under the rule of law depends on three legal approaches. The three legal approaches to the development of the legal right to an education in the most enabling environment for children with special needs are:

1. An express provision in a school act of the right to an education in the most enabling environment.

2. An express provision of the right to an education, without discrimination in the most enabling environment, in provincial human rights codes.

3. The right to an education in the most enabling environment developed under the Canadian Charter of Rights and Freedoms and Human Rights Code by case law establishing such a right.

The author recognizes that there are other significant means by which an education in a most enabling environment can (must) be realized.

The foregoing legislative provisions should be such as assures that every individual has a right to an individualized education program with all the technical, human, transportation and financial resources necessary to support the program including early identification processes, all of which shall be utilized commensurate with the particular identified needs of the individual.

Such legislation should also define an education in the most enabling environment for a special needs child as meaning an education that is in the best interests of the child and comprising of the following, namely:

1. Is based on correctly identified needs and as detailed in an individual educational profile (IEP) specifying the currently appropriate remediation.

2. Is carried out by appropriately trained persons in association with required specialists and with sufficient regularity.

3. Is carried out on a timely basis. 4. Is carried out in an environment that is best suited to the child's needs, socially,

physically, emotionally, behaviourally, mentally and educationally. 5. Has available and uses appropriate resources, technical and otherwise which maximize

the ability to assure meaningful access to programs offered by the school system. 6. Has a built in process of regular re-evaluation and adjustment and not less than half

yearly. 7. Has meaningful participation by the parents, and when appropriate the child, at all

stages of assessment, planning, placement and instruction. 8. Is given effect to by a designated team made up of the appropriate personnel. 9. Provides a range of placement options each being particularly suited to meet the child's

best interests as encompassed by the foregoing.

The individual and parents or guardian of the individual shall have the right to participate in and receive all information with respect to all aspects of the ongoing planning including the resources necessary to support the evaluation and modification of the current program. The parents shall be consulted in respect to any placement or change in placement.

II. THE RIGHT TO EQUALITY - The Canadian Charter of Rights and Freedoms

The right to equality by every individual is guaranteed by the Canadian Charter of Rights and Freedoms (the Charter). The Charter protects the individual(s) from infringement of those rights

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by Government, its agencies and delegatees as noted by the Supreme Court of Canada (Justice La Forest) in McKinney v. University of Quelph6:

"[T]he Charter is confined to government action. This Court has repeatedly drawn attention to the fact that the Charter is essentially an instrument for checking the powers of government over the individual…The exclusion of private activity from the Charter was not a result of happenstance. It was a deliberate choice which must be respected…Government is the body that can enact and enforce rules and authoritatively impinge on individual freedom. Only government requires to be constitutionally shackled to preserve the rights of the individual."

The right not to be discriminated in respect of matters such as in employment or in respect of services is as guaranteed by the Provincial Human Rights Code and by the Federal Human Rights Code in respect of matters which come under its jurisdiction and applies to all of society generally as well as to governments, its agencies and delegatees.

Section 15(1) of the Charter provides that every individual is equal before and under the law and has a right to equal protection and equal benefit of the law without discrimination and in particular without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

Section 15(1) of the Charter therefore spells out four basic equality rights that every individual (including of course every child) in Canada is entitled to namely:

1. The right to equality before the law which means the law is to be impartially administered.

2. The right to equality under the law which means that the right to equality in respect to the substance of the law.

3. The right to equal protection of the law which means the right to the equality of opportunity and equality of result.

4. The right to equal benefit of the law which means the right to unequal distribution of resources in the case of unequal need.

It has been determined by the Supreme Court of Canada that the right to equality granted to the individuals pursuant to the Charter are constitutionalized rights. In other words, rights granted by the Charter are superior to all other legislation and can only be taken away from an individual under very limited circumstances. This will be discussed in greater detail later in this paper.

As Justice McLaughlin of the Supreme Court of Canada (as she was then and now Chief Justice of the Court) stated,

"The purpose of a charter's guarantee of equality as affirmed by the Supreme Court of Canada was to better the situation for members of groups which had traditionally been subordinated and disadvantaged."7

To realize the rights under s.15 of the Charter to equal protection under the law means the right to equality of opportunity, and that the right to equal benefit under the law means the right to unequal distribution of resources in the case of unequal need.

6 McKinney v. University of Guelph [1990] 3 S.C.R. 229 7 "The evolution of Equality", July 19, 1996, 54 Advocate Vancouver 559-563

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The fundamental premise, upon which equality is rooted in the Charter, is that every person is unique and that such uniqueness must be responded to on an individual basis.

Only by so doing will such person be guaranteed that he/she will receive services appropriately responsive to his/her unique or special needs.

Only in this way will their dignity be respected and protected.

Only in this way will persons with disabilities achieve true equality.

The legal decisions which I will be referring to have established the foregoing principles, fundamental to achieving equality.

Some have denigrated the Supreme Court for having invaded Parliament's right to make policy by virtue of its decisions on the Charter. However the Charter is a living document and its wording clearly invites the Court's involvement. When an individual's or a group of individuals' Charter rights to equality have been denied, the Court has acted strictly within the authority given to it by the Charter in dealing with that issue. For example, the list of grounds of non discrimination in the Charter are not exhaustive. This enabled the courts, as it did, to develop new grounds of non-discrimination where the distinction shown are considered unacceptable and it has done so.

Iacobucci J., in the Supreme Court of Canada decision in Vriend8, stated:

In my opinion, groups that have historically been the target of discrimination cannot be expected to wait patiently for the protection of their human dignity and equal rights while governments move toward reform one step at a time. If the infringement of the rights and freedoms of these groups is permitted to persist while governments fail to pursue equality diligently, then the guarantees of the Charter will be reduced to little more than empty words. (my emphasis)

III. SECTION 1 OF THE CHARTER: DEFENCE TO BREACH OF SEC. 15(1) OF THE CHARTER

When a violation of s. 15 (1) of the Charter has been established, a defence may be raised under s. 1 of the Charter. Section 1 provides as follows:

1. The Canadian Charter of Rights and Freedoms guarantees the rights and freedoms set out in it subject only to such reasonable limits prescribed by law as can be demonstrably justified in a free and democratic society.

This was considered by the British Columbia Court of Appeal in Auton9 and particularly at para. 54:

The analytical framework for determining whether an impugned measure is reasonable and demonstrably justified in a free and democratic society was set out in R. v. Oakes, [1986] 1 S.C.R. 103, 24 C.C.C. (3d) 321, and restated in Egan v. Canada, supra, by Justice Iacobucci at para. 182:

8 Vriend v. Alberta, [1998] 1 S.C.R. 493 at 559-560 9 Auton v. Attorney-General of British Columbia et al, [2002] BCCA at 538

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...A limitation to a constitutional guarantee will be sustained once two conditions are met. First, the objective of the legislation must be pressing and substantial.

Second, the means chosen to attain this legislative end must be reasonable and demonstrably justified in a free and democratic society. In order to satisfy the second requirement, three criteria must be satisfied: (1) the rights violation must be rationally connected to the aim of the legislation; (2) the impugned provision must minimally impair the Charter guarantee; and (3) there must be a proportionality between the effect of the measure and its objective so that the attainment of the legislative goal is not outweighed by the abridgement of the right. In all s. 1 cases the burden of proof is with the government to show on a balance of probabilities that the violation is justifiable.

The burden of proof on governments is considerable and the foregoing conditions have particular relevance when breach of Charter rights is asserted when for example, cut backs in education occur which disproportionately impact on special needs children.

IV. CONTINUING RESPONSIBILITY OF GOVERNMENT

An important issue is the respective and shared responsibility of the government and of the bodies to whom it delegates certain responsibilities under enabling legislation such as school boards pursuant to a Schools Act. Firstly in that regard I would refer you to the decision of the Supreme Court in Eldridge v. British Columbia10. The Supreme Court of Canada found in Eldridge that:

Governments just as they are not permitted to escape Charter scrutiny by entering into commercial contracts or other 'private' arrangements, should not be allowed to escape their constitutional responsibilities by delegating the implementation of their policies and programs. (my emphasis)

In other words, delegation does not remove the overall continuing obligation and responsibility of the government. Under the statues such as The Public Schools Act, school boards have been delegated certain statutory authority.

Bodies exercising statutory authority, as a result of having been delegated that authority by a government by a statute, are nevertheless bound by the Charter. In that regard, I refer to the decision by the Supreme Court of Canada in Blencoe v. British Columbia (Human Rights Commission)11. The majority decision of the court was given by a Bastarache JJ. At para. 35, Justice Bastarache stated as follows:

Bodies exercising statutory authority are bound by the Charter even though they may be independent of government. This was confirmed by La Forest J. speaking for the unanimous Court in Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624.

And at para. 40, Justice Bastarache stated, in determining that the Commission was nevertheless bound by the Human Rights Code, as follows:

10 Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624 11 Blencoe v. British Columbia (Human Rights Commission) [2000] 2 S.C.R. 307

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The state has instituted an administrative structure, through a legislative scheme, to effectuate a government program to provide redress against discrimination. It is the administration of a governmental program that calls for Charter scrutiny…. These entities are subject to Charter scrutiny in the performance of their functions just as government would be in like circumstances. To hold otherwise would allow the legislative branch to circumvent the Charter by establishing statutory bodies that are immune to Charter scrutiny…. (my emphasis)

And at para. 39, Justice Bastarache stated:

All of the Commission’s powers are derived from the statute. The Commission is carrying out the legislative scheme of the Human Rights Code. It is putting into place a government program or a specific statutory scheme established by government to implement government policy…

The matter of the all embracing, superior continuing authority and responsibility of a provincial ministry of education was dealt with in the decision of the British Columbia Supreme Court by Shaw J. in Her Majesty the Queen in the Right of the Province of British Columbia as represented by the Minister of Education and Frederick Moore.12. The author represented the Intervenor, Learning Disabilities Association of Canada, at the hearing of the matter by the British Columbia Human Rights Tribunal. The complainant was successful in his action against both the Government and the School Division.13 The latter both appealed to the Supreme Court of British Columbia by way of Judicial Review. The Judicial Review hearings were completed last May and we are awaiting judgment.

Mr. Justice Shaw at para. 19 found that the Ministry’s duties and responsibilities are far broader than simply providing funding. In para. 20 of the judgment, Justice Shaw referred to sections 167(1) and 168(1) of the School Act and noted that the duties and powers under the foregoing sections are separate and distinct from the Ministry’s responsibility to provide funds to the boards of school districts. In para. 21 he noted that the funding responsibilities are set out in section 108 of the Act. In para. 2 Shaw J. stated:

It will be noted that under s. 108(6)(a)(ii) above, the Ministry may tell school boards to spend a certain amount of money to provide programs or services to “special needs” students.”

In para. 3 Shaw J. notes that the boards of the school districts also have statutory powers and duties.

In para. 25 of his judgment, Shaw J. notes that s. 75(1) referred to in para. 23 as follows:

These words make it quite clear that the powers of the boards are subject to other provisions of the Act (including those I have already cited) and to any orders made by the Minister.

At para. 26 Justice Shaw concludes as follows: Based on all the above provisions of the School Act I conclude that the Ministry’s powers extend well beyond the funding of the school districts. It follows that

12 2001 39 C.H.R.R. D/208 and at 2001 B.C.S.C. at 336 13 Moore v. B.C. (Ministry of Education) and School District No. 44, (2005) BCHRTD 580

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allegations of discrimination against the Ministry cannot be limited to the use or misuse of the funding power. (my emphasis)

This decision was not appealed by the Government or the School District.

V. MEANING OF DISCRIMINATION

It should be noted that the rights granted by Section 15(1) of the Charter are granted without discrimination based on race, national or ethnic original, colour, religion, sex, age or mental or physical disability. The right not to be discriminated against under Human Rights Codes are based on similar grounds.

The definition of discrimination by the Supreme Court of Canada can be found in Brooks v. Canada Safeway Ltd.14 namely:

… discrimination may be described as a distinction, whether intentional or not but based on grounds relating to personal characteristics of the individual or group, which has the effect of imposing burdens, obligations, or disadvantages on such individual or group not imposed upon others, or which withholds or limits access to opportunities, benefits, and advantages available to other members of society.

In this regard I refer to Canadian Odeon Theatres Ltd. v. Human Rights Commission (Sask.) and Huck15 decision of the Saskatchewan Court of Appeal where Vancise, JJ.A. states:

The treatment of a person differently from others may or may not amount to discrimination just as treating people equally is not determinative of the issue. If the effect of the treatment has adverse consequences which are incompatible with the objects of the legislation by restricting or excluding a right of full and equal recognition and exercise of those rights, it will be discriminatory. (my emphasis)

In Eldridge supra the Supreme Court of Canada in considering the issue of discrimination, the majority of the judgment of the Court as given by Lamer C.J. and as noted in the headnote, the Court found:

The principle that discrimination can accrue from a failure to take positive steps to ensure that disadvantaged groups benefit equally from services offered to the general public is widely accepted in the human rights field. It is also a cornerstone of human rights jurisprudence that the duty to take positive action to ensure that members of disadvantaged groups benefit equally from services offered to the general public is subject to the principle of reasonable accommodation. (my emphasis)

14 Brooks v. Canada Safeway Ltd., [1989] 1 S.C.R. 1219, pp. 1234-1235 15 Canadian Odeon Theatres Ltd. v. Human Rights Commission (Sask) and Huck, [1985] 6 C.H.R.R. 3/2682 (Sask) C.A.

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VI. IMPORTANCE OF AN APPROPRIATE EDUCATION

The importance of an appropriate education for children was dealt with in the 1996 judgment of the Supreme Court of Canada in Ross16. The unanimous judgment of the Court was delivered by LaForest J. who at paras. 81-82 stated as follows:

In discussing the interest of the State in the education of its citizens in Jones, supra, at p. 296 ((1986) 2 S.C.R. 284), I stated that “[w]hether one views it from an economic, social, cultural or civic point of view, the education of the young is critically important in our society”. And I adopted at p. 297 much of what was said in the American case of Brown v. Board of Education of Topeka, 347 U.S. 483 (1954), in the following passage, at p. 493:

Today, education is perhaps the most important function of state and local governments. . . . It is the very foundation of good citizenship. Today it is a principal instrument in awakening the child to cultural values, in preparing him for later professional training, and in helping him to adjust normally to his environment. (my emphasis)

The importance of the provision of education by the state, and the Government of New Brunswick’s commitment to eradicating discrimination in the public school system, must inform our constitutional review of the order, which, it will be remembered, was made to remedy practices in the provision of educational services found to be discriminatory.

There can be no doubt that the attempt to foster equality, respect and tolerance in the Canadian education system is a laudable goal. But the additional driving factor in this case, is the nature of the educational services in question. As the Court noted in this judgment:

we are dealing here with the education of young children. While the importance of education of all ages is acknowledged, of principal importance is the education of the young. As stated in Brown, supra, education awakens children to the values a society hopes to foster and to nurture. ... The importance of ensuring an equal and discrimination free education environment, and the perception of fairness and tolerance is the classroom are paramount in the education of young children. This helps foster self-respect and acceptance by others. (my emphasis)

Justice McLaughlin, in the 1999 decision of the Supreme Court of Canada in Children's Foundation v. Patrick Allan Bazley17, emphasized that the greater the reliance upon an institution by an individual the greater its duty to that individual. She also stated that the care of vulnerable children is a critical area of human conduct. Accordingly the several and joint responsibility of a government and its delegatees are even greater when the child in its care is a vulnerable child.

VII. THE BEST INTEREST OF THE CHILD

The late Justice Dickson, the Chief Justice of the Supreme Court of Canada, in its 1987 decision C.N.R. v. C.M.H.R.C18, stated: 16 Ross v. New Brunswick School District No. 15, [1996] 1 S.C.R. 825 17 Children's Foundation v. Patrick Allan Bazley, [1999] 2 S.C.R. 534 and particularly at 568 + 569 18 Canadian National Railway Company v. Canada (Canadian Human Rights Commission) [1987] 1 S.C.R. 1114

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Human rights legislation is intended to give rise amongst other things to individual rights of vital importance rights capable of enforcement.... We should not search for ways and means to minimize these rights so as to avoid their proper impact ... human rights legislation for people with disabilities is to guarantee...that they will...enjoy a real and not simply hypothetical right to equal opportunity with (other) individuals to make for themselves the lives that they are able and wish to... (my emphasis)

In that same context, consideration should be given to Eaton19, a 1997 decision of the Supreme Court of Canada. In this case, the school system wished to place Emily, a child with generalized mental disabilities, in a specialized setting. The parents wished Emily to remain in the general classroom. The Court found that Emily’s best interests would be best served in a specialized setting. The late Mr. Justice Sopinka who wrote the judgment stated:

... in general distinctions based on presumed rather than actual characteristics, are the hallmark of discrimination and have particular significance when applied to physical and mental disabilities …. The accommodation of differences…is the true essence of equality. This emphasizes that the purpose of s. 15(1) of the Charter is (1) not only to prevent discrimination by the attribution of stereotypical characteristics to individuals, but (2) also to ameliorate the position of groups within Canadian society who have suffered disadvantage by exclusion from mainstream society as has been the case with disabled persons. (my emphasis.)

Justice Sopinka went on to state in his reasons for judgment in Eaton that:

(1) The principal object of certain of the prohibited grounds is the elimination of discrimination by the attribution of untrue characteristics based on stereotypical attitudes relating to immutable conditions such as race or sex. In the case of disability, this is one of the objectives. (2) The other equally important objective seeks to take into account the true characteristics of this group which act as headwinds to the enjoyment of society's benefits and to accommodate them. (my emphasis)

Justice Sopinka's reference to the group is most important because it emphasizes the need to address these concerns systemically if the barriers are to be effectively overcome.

I agree completely with Justice Sopinka's further finding in Eaton that the decision that is to be made ultimately should be one which is child-centered, that is in the child’s best interests. He further stated in his Reasons for judgement:

We cannot forget, however, that for a child who is young or unable to communicate his or her needs or wishes, equality rights are being exercised on his or her behalf, usually by the child's parents. Moreover, the requirements for respecting these rights in this setting are decided by adults who have authority over this child. For this reason, the decision-making body must further ensure that its determination of the appropriate accommodation for an exceptional child be from a subjective, child-centered perspective, one which attempts to make equality meaningful from the child's point of view as opposed to that of the adults in his or her life. (my emphasis.)

19 Eaton v. Brant County Board of Education [1997] 1 S.C.R. 241

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He went on to state:

As a means of achieving this aim, it must also determine that the form of accommodation chosen is in the child's best interests. A decision-making body must determine whether the integrated setting can be adapted to meet the special needs of an exceptional child. Where this is not possible, that is, where aspects of the integrated setting which cannot reasonably be changed interfere with meeting the child's special needs, the principle of accommodation will require a special education placement outside of this setting. (my emphasis)

Justice Sopinka then made his seminal decision as to what educational environment is in the best interest of the child. He stated that:

Special education for students with learning disabilities indicates the positive aspects of segregated education placement. Integration can be either a benefit or a burden depending on whether the individual can profit from the advantages that integration provides. (my emphasis.)

The Eaton decision by the Supreme Court of Canada remains the seminal and binding decision on the important issues noted and remains undiminished in its binding effect.

A 2003 decision by the Court of Appeal of Ontario, Bonnah20 noted that schools must strive to create an environment in which all students, including those with exceptional needs, can thrive and achieve their full potential.

Bonnah was a case in which there were two competing concerns: One, to provide programs to the exceptional child that was in that child’s best interests, and second, the behaviour of that child, which resulted in safety concerns for others in the school system. In other words, there were two “best interests” at play, namely (1) that of the exceptional child and (2) the best interests of the other children. The Court found that the safety concerns could have been properly addressed by the school by removing the child from the classroom, rather than from the school, which they failed to explore, and an approach that has the more limited consequence must be preferred in the case of an exceptional child.

The ultimate rationale of this judgment, re-affirming the decision of the Supreme Court in Eaton, is that the focus must be on what is in the child's best interest and the more dependent the child, the greater the right to the required accommodation in order to achieve equality.

VIII. THE RIGHT TO RECEIVE SERVICES ASSURING MEANINGFUL ACCESS

At this time reference will be made to several decisions of the Supreme Court of Canada, which confirm the rights of persons with disabilities including those with learning disabilities (L.D.), to receive from government and its delegatees the services they need and are entitled to, and in a timely fashion in order to achieve meaningful access.

It is essential that such individuals and groups of individuals and their advocates know their rights so they can act upon them. Acting upon them by initiating legal proceedings is an option that more and more are doing because of the lack of progress by governments and its delegates to meet their needs.

20 Bonnah v. Ottawa Carlton District School Board, [2003] O.J. No. 1156

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As Pearl Eliades, at that time Research Director of the Ontario Human Rights Commission, wrote in the publication, Charter and Human Rights Legislation, the Supreme Court of Canada by these decisions:

"…has emphasized the need to adopt society so as to include persons with disabilities in its design structure and concept. This shift in the approach to disability law affirms the centrality of dignity in achieving equality and the importance of individual differences in respecting the person…The further practical result of these cases is that in most cases of discrimination on the grounds of disability, individualized accommodation is necessary."

The Supreme Court of Canada in its 1999 decision in Law v. Canada21 emphasized the obligation of governments to carry out its responsibility to vulnerable persons as follows:

...the purpose of s. 15(1) is to prevent the violation of essential human dignity and freedom through the imposition of disadvantage, stereotyping, or political or social prejudice, and to promote a society in which all persons enjoy equal recognition at law as human beings or as members of Canadian society, equally capable and equally deserving of concern, respect and consideration...Legislation which effects differential treatment between individuals or groups will violate this fundamental purpose where those who are subject to differential treatment fall within one or more enumerated or analogous grounds, and where the differential treatment reflects the stereotypical application of presumed group or personal characteristics, or otherwise has the effect of perpetuating or promoting the view that the individual is less capable, or less worthy of recognition or value as a human being or as a member of Canadian society. (my emphasis)

Mr. Justice Lamer of the Supreme Court of Canada in its majority decision in University of British Columbia v. Berg22 stated that denying students to accommodation services and facilities they require to make their admission meaningful, cannot be maintained.

Only by assuring the right of a person with learning disabilities to have his or her individual needs respected and effectively responded to by assuring meaningful access, will such person receive those services appropriately responsive to his or her needs; in other words, the right to appropriate accommodation provided in the most enabling environment.

The obligation by the school system to provide the most appropriate accommodation for special needs children was recently re-emphasized in a decision by the Supreme Court of Canada in Granovsky23 in 1999 where the Binnie J. delivering the Judgment of Court stated:

The true focus of the S. 15(1) disability analysis is not on the impairment as such, nor even any associated functional limitations, but is on the problematic response of the state to either or both of these circumstances. It is the state action that stigmatizes the impairment, or which attributes false or exaggerated importance to the functional limitations (if any), or which fails to take into account the "large Remedial component" (Andrews v. Law Society of British Columbia, [1989] 1 S.C.R. 143, at p. 171) or "ameliorative purpose" of S. 15(1) (Eaton v. Brant County Board of Education, [1997] 1

21 Law v. Canada (Minister of Employment and Immigration), [1999] 1 S.C.R., at p. 500 and p. 529 22 University of British Columbia v. v. Berg, [1993] 2 S.C.R. 353 23 Granovsky v. Canada (Minister of Employment and Immigration), [2000] 1 S.C.R. 703.

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S.C.R. 241, at para. 66; Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624 at para. 65; Law, supra, at para. 72), that creates the legally relevant human rights dimension to what might otherwise be a straightforward biomedical condition. (my emphasis)

The Charter is not a magic wand that can eliminate physical or mental impairments, nor is it expected to create the illusion of doing so. Nor can it alleviate or eliminate the functional limitations truly created by the impairment. (my emphasis)

What s. 15 of the Charter can do, and it is a role of immense importance, is address the way in which the state responds to people with disabilities. Section 15(1) ensures that governments may not, intentionally or through a failure of appropriate accommodation, stigmatize the underlying physical or mental Impairment, or attribute functional limitations to the individual that the underlying physical or mental impairment does not entail, or fail to recognize the added burdens which person with disabilities may encounter in achieving self-fulfillment in a world relentlessly oriented to the able-bodied. (my emphasis)

It is therefore absolutely critical to specifically identify the nature of the child's learning difficulty or learning disability as early as possible, and to begin remediation in a timely fashion. Indeed that is the child's right as emphasized by the foregoing and following judgments.

In a 1999 judgment by the Supreme Court of Canada known as Grismer24, Justice McLaughlin reaffirmed the right of each person being assessed according to his or her own personal characteristics instead of being judged against presumed group characteristics. She stated:

Employers and others governed by human rights legislation are now required in all cases to accommodate the characteristics of affected groups within their standards, rather than maintaining discriminatory standards supplemented by accommodation for those who cannot meet them. Incorporating accommodation into the standard itself ensures that each person is assessed according to her or her own personal abilities instead of being judged against presumed group characteristics. Such characteristics are frequently based on bias and historical prejudice and cannot form the basis of reasonably necessary standards. (my emphasis)

The Supreme Court of Canada in Law25 emphasized the obligation of governments (and this applied to its delegatees as well) to carry out its responsibility to vulnerable persons so as to avoid unjustifiable differential treatment, as follows:

It may be said that the purpose of s. 15(1) is to prevent the violation of essential human dignity and freedom through the imposition of disadvantage, stereotyping, or political or social prejudice, and to promote a society in which all persons enjoy equal recognition at law as human beings or as members of Canadian society, equally capable and equally deserving of concern, respect and consideration. Legislation which effects differential treatment between individuals or groups will violate this fundamental purpose where those who are subject to differential treatment fall within one or more enumerated or analogous grounds, and where the differential treatment reflects the stereotypical application of

24 British Columbia (Superintendent of Motor Vehicles) v. British Columbia (Council of Human Rights), [1999] 3 S.C.R. 868 ("Grismer") 25 Law v. Canada (Minister of Employment and Immigration) [1999] 1 S.C.R. 497

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presumed group or personal characteristics, or otherwise has the effect of perpetuating or promoting the view that the individual is less capable, or less worthy of recognition or value as a human being or as a member of Canadian society. (my emphasis)

The Supreme Court of Canada emphasized in Law that if differential treatment reflects the stereotypical application of presumed group or personal characteristics, it would be a violation of essential human dignity and a violation of section 15(1).

The Supreme Court also stated in Law that:

It is impossible to evaluate a section 15(1) claim without identifying specific personal characteristics or circumstances of the individual or group bringing a claim and comparing the treatment of that person or group to the treatment accorded to a relevant comparator. (my emphasis)

The Supreme Court in Law also determined that one of the means by which a court can determine whether the legislative scheme is discriminatory, is whether it was underinclusive in purpose or effect. In other words, the legislative scheme is discriminatory by providing services to some groups while excluding those same services sought by the claimants. The inquiry by the courts means looking beyond the question of what the law provides to the question of whether what the law provides is discriminatory in a substantive sense.

One of the excuses, and totally at odds with the foregoing judgments, used by some professionals, some school systems, and by some school administrators and governments, not to identify as early as possible (and therefore not to provide services), is the alleged negative effect on children by virtue of being labelled. We label children with such terms as measles, mumps, cancer, cerebral palsy, aspergers, tourettes and the like. This simply identifies the condition at that moment in time and points to the treatment required. Yet, some argue that we should not identify a child's difficulty because they believe that such identification (labeling) might have a pejorative affect. How can one possibly determine a specific course of action if there is not a precise assessment and precise identification, followed by precise remediation?

For example: It is well established that cause of L.D. is neurological and as a result there are some who argue that as a result it is a medical diagnosis and that any term that is used to describe a condition such as dyslexia, is a medical term. They then further argue that as a result this is not an issue that should be addressed by educators. That is patent nonsense. For example, a person has a stroke which affects their cognitive abilities of such an individual. The course of action is not a medical one. Rehabilitative measures used are those which deal with cognitive rehabilitation.

One can't help but conclude that those (particularly school boards and governments) who espouse the totally unjustified position of such labeling as being pejorative, do so in order to justify de-categorizing children with learning disabilities.26 The real reason they do so is because there are so many more children with learning disabilities compared to others and therefore more money to save by deleting categories of LD children who had previously received funding specific to these children's needs. Such actions by governments wishing to save money have had the most negative impact on children with learning disabilities.

26 Moore v. B.C. (Ministry of Education) and School District No. 44, (2005) BCHRTD 580

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The following are some measures provincial departments of education and school boards have taken to reduce their costs on the backs of the learning disabled:

• No longer categorizing children with mild or moderate learning disabilities as a specific category deserving of special monetary support and now describing them as children having "unspecified learning difficulties" dumping them into the general classroom with little or no remediation and no longer providing specific funding;

• Establishing arbitrary waiting periods – two to three years – before providing meaningful service to see "if they will grow out of it". In the meantime, many of these children suffer irreparable harm;

• Canceling pull-out programs for such children, which did provide regular, timely support by specialists for the child and classroom teacher. Itinerant support then provided, by significantly fewer such specialists, falls far short of what is needed;

• Early identification and timely effective assessment and remediation have become severely delayed as a result of the too few of personnel such as psychologists, resource teachers, language pathologists, reading clinicians and the like being made available because the numbers of special need children, having been artificially reduced by the foregoing actions, no longer warrant such personnel. The result is that such services when provided are so intermittent as to be short term band-aid.

The foregoing and other actions by too many Departments of Education and school divisions deprive these children of their right to equality as guaranteed by the Charter and their right not to be discriminated against as guaranteed by Human Rights Codes. Such actions by government include establishing funding formulas for school divisions which leave them in a situation of perpetual shortfall in providing needed services to special needs children. In the province of Manitoba, meeting by government of the actual costs incurred by school divisions, range from a high of 90% to a low of 50%.

IX. EQUAL ENTITLEMENT TO SERVICES

In Eldridge27, a 1997 decision by the Supreme Court of Canada, the Court stated that all human beings are entitled to those services that respect their dignity and that includes the right to benefit equally from services provided to the general public.

As noted particularly in the judgment of Lamer, C.J. in Eldridge in the Headnote, in which he stated:

To argue that governments should be entitled to provide benefits to the general population without ensuring that disadvantaged members of society have the resources to take full advantage of those benefits bespeaks a thin and impoverished vision of s. 15(1). It is belied, more importantly, by the thrust of this Court’s equality jurisprudence. (my emphasis)

Furthermore, at para. 78 of the judgment, La Forest stated as follows:

27 Eldridge v. British Columbia (Attorney General), [1997] 3 S.C.R. 624

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The principle that discrimination can accrue from a failure to take positive steps to ensure that disadvantaged groups benefit equally from services offered to the general public is widely accepted in the human rights field. (my emphasis)

The Court re-emphasized in Eldridge that the equality section of the Charter, namely section 15(1), serves two distinct but related purposes. Firstly, it expresses a commitment deeply engrained in our social, political and legal culture to the equal worth and human dignity of all persons. All individuals in society must be secure in the knowledge that they are recognized at law as human being equally deserving of concern, respect and consideration. Secondly, section 15 instantiates a desire to rectify and prevent discrimination against particular groups suffering social, political and legal disadvantages in our society.

When in Eldridge the government argued that it should be entitled to provide benefits to the general population without ensuring that disadvantaged members of society have the resources to take full advantage of those benefits, Supreme Court Justice La Forest in response stated:

This Court has repeatedly held that once the state does provide a benefit, it is obliged to do so in a non-discriminatory manner. Government must take special measures to ensure that disadvantaged groups are able to benefit equally from government services. (my emphasis)

Eldridge is the Supreme Court of Canada determinative finding on this most important issue and remains undiminished in its binding effect.

X. PROPORTIONALITY IN ACTIONS BY GOVERNMENT

The actions taken by the Government and its delegatees such as school boards must be proportional to the objective to be achieved, failing which it is discriminatory and in breach of the Charter. The issue of proportionality was dealt with by the Supreme Court of Canada in Irvin Toy28.

At para. 76 of Irwin Toy, the following statement was made by the majority, namely:

The second part of s. 1 (that is, of the Charter) and s. 9.1 test involves balancing a number of factors to determine whether the means chosen by the Government are proportional to its objective. As Dickson C.J. stated in Edwards Books and Art Ltd., supra, at p. 768:

…the means chosen to attain those objectives must be proportional or appropriate to the ends. The proportionality requirement, in turn, normally has three aspects: the limiting measures must be carefully designed, or rationally connected, to the objective; they must impair the right as little as possible; and their effects must not so severely trench on individual or group rights that the legislative objective, albeit important, is nevertheless outweighed by the abridgement of rights. (my emphasis)

As noted in para. 78 of the judgment in Irwin Toy:

28Irvin Toy Ltd. v. Québec (Attorney General) [1989] 1 S.C.R. 927

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The party seeking to uphold the limit must demonstrate on a balance of probabilities that the means chosen impair the freedom or right in question as little as possible. (my emphasis)

Further, at para. 79 of Irwin Toy, Dickson C.J.A. expressed an important concern about the situation of vulnerable groups (at p. 779):

In interpreting and applying the Charter I believe that the courts must be cautious to ensure that it does not simply become an instrument of better situated individuals to roll back legislation which has as its object the improvement of the condition of less advantaged persons ... Thus as courts review the results of the legislature’s deliberations, particularly with respect to the protection of vulnerable groups, they must be mindful of the legislature’s representative function. (my emphasis)

Further in that regard, reference is to be made to the decision by the Supreme Court of Canada in Brooks29. The unanimous judgment of the Supreme Court of Canada was delivered by Dickson C.J. At p 1234, Dickson, C.J. quotes with approval C.N.R. v. C.M.H.R., supra, as follows:

It is not a question of whether this discrimination is motivated by an intentional desire to obstruct someone's potential, or whether it is the accidental by-product of innocently motivated practices or systems. If the barrier is affecting certain groups in a disproportionately negative way, it is a signal that the practices that lead to this adverse impact may be discriminatory. (my emphasis)

XI. UNDUE HARDSHIP AS A JUSTIFIABLE REASON FOR NOT PROVIDING REASONABLE ACCOMMODATION

In Canada, pursuant to Human Rights Codes, reasonable accommodation is obliged to be provided by the employers and service providers unless that obligation should constitute undue hardship to such employer or service provider. Therefore, undue hardship can be a justifiable defence to a complaint of discrimination.

In Central Alberta Dairy Pool30, the Supreme Court of Canada (1990) held that where a rule has an adverse effect on a prohibited ground, the rule will be upheld if the employer can show that it accommodated the employee to the point of undue hardship.

The Supreme Court of Canada elaborated on the concept of undue hardship and reasonable accommodation in the case of Central Okanagan School District31, Justice Sopinka who wrote the majority decision at p. 85 stated:

More than mere negligible effort is required to satisfy the duty to accommodate. The use of the term "undue" infers that some hardship is acceptable; it is only "undue" hardship that satisfies this test. The extent to which the discriminator must go to accommodate is limited by the words "reasonable" and "short of undue hardship". These are not independent criteria but are alternate ways of expressing the same concept. (my emphasis)

29 Brooks v. Canada Safeway Ltd., [1989] 1 S.C.R. 1219 30 Central Alberta Dairy Pool v. Alberta (Human Rights Commission), [1990] 2 S.C.R. 489 31 Central Okanagan School District No. 23 v. Renaud, [1992] 2 S.C.R. 970

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In Schachter32, a 1992 decision by the Supreme Court, it is noted that any remedy granted by a court will have some budgetary repercussions whether it be a saving of money or expenditure of money and, therefore, that alone is not a justifiable defence to a charge of discrimination except in very rare circumstances as will be later noted.

In a recent decision by the Supreme Court of Canada in Meirion33 in 1999, the Court stated that "one must be wary of putting too low a value of accommodating the disabled. It is all too easy to cite increased costs as a reason for refusing to accord the disabled equal treatment." The Court also stated that in assessing whether it is impossible to accommodate without imposing undue hardship the following inquiries should be made.

• Details of the financial cost of required accommodations.

• Information about the size and financial resources of the organization.

• How, if at all, the accommodation would cause substantial interference with the rights of others (employees, other service users, members of the public, etc.).

• Details of any additional risks or detriments (including effect on morale) alleged to flow from the required accommodation and whom they are borne by.

• Details as to whether the service could be re-designed, provided in a different way or from a different location, etc.

• Whether, and how, other similar service providers have achieved appropriate accommodation.

A 2004 decision by the Supreme Court of Canada in Newfoundland (Treasury Board)34 dealt with the issue where cost alone was sufficient to establish undue hardship and the rare circumstances by which that may arise. The Province of Newfoundland refused to honour its obligation to make payment under an agreement made by it with a group of female employees in the province as a result of not their having received equal pay for work of equal value, followed by enacting legislation to confirm such payment. Before payment, the province was able to establish that it was then in such financial straits that the whole fabric of its social security system and other systems were bound to fail unless the payment was deferred to some considerable time in the future. The action by the employees to compel immediate payment was dismissed in that the Court found that s.1 of the Charter applied.

The Court also stated that it would be very rare indeed where such a situation would occur. The Court made it clear that a government would have to be in a catastrophic financial state before it could demonstrate undue hardship and justify action under section 1 of the Charter denying the constitutional rights of this group of women to receive the payments that they were entitled to in order to achieve equality.

32 Schachter v. Canada, [1992] 2 S.C.R. 679 33 British Columbia (Public Service Employee Relations Commission) v. B.C.G.S.C.U. [1999] 3 S.C.R. 868 (the Meirion decision) 34 Newfoundland (Treasury Board) v. N.A.P.E., [2004] 3 S.C.R. 381

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As to the matter of reasonableness regarding the obligation to provide accommodation, I refer to the 1990 decision of the Supreme Court of Canada in Stoffman35, and in particular the judgment of Wilson J. at p. 483. As noted in that decision by Wilson J., Canadian citizens and governments alike have come to consider equal access to health care as a basic right of social citizenship. Having in mind the decisions by the Supreme Court of Canada in Ross supra as to the importance of education of the young, it is equally the case that equal access to education is also a basic right of social citizenship. All one needs to do is read the objects and purposes of most School Acts and the Human Rights Act of the provinces and territories to come to that conclusion.

The 1999 decision by the Supreme Court of Canada in Grismer, supra, also deals with the issue where costs to be incurred by the Government was used by it as justification for denying accommodation.

The Complainant having established a prima facie case for discrimination, the burden then shifted to the Government to demonstrate that if it were obliged to provide reasonable accommodation to the Complainant, it would experience undue hardship. The Court found that the evidence advanced by the Government in Grismer was deficient.

McLachlin J., who gave the unanimous decision of the Supreme Court in Grismer, stated: “One must be wary of putting too low a value on accommodation of the disabled. It is all too easy to cite increased costs as a reason for refusing to accord the disabled equal treatment.” (my emphasis)

As stated in Grismer, once a prima facie case of discrimination is proven, the onus shifts to the service provider which under a School Act would be the Government and its delegatee the School Board each having to prove that:

I. The standard or policy does not exclude members of a particular group on impressionistic assumptions.

II. The standard or policy does not treat one particular group more harshly than others without apparent justification.

III. There has been an effective search for alternative approaches, including potential accommodation.

Therefore, to fulfill the “reasonably necessary element” the policy or standard must be designed and adopted in such a way to accommodate individual differences up to the point of undue hardship on the part of the service provider.

By virtue of these decisions, the Supreme Court of Canada has clarified and broadened the extent of the duty to accommodate, ruling that:

(1) Accommodation measures must be taken unless it is impossible to do so without undue hardship.

(2) The threshold to establish undue hardship is high.

35 Stoffman v. Vancouver General Hospital, [1990] 3 S.C.R. 483

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(3) Employers and service providers must be sensitive to the various ways in which individual identified needs can be accommodated.

(4) Courts, labour arbitrators and human rights tribunals are to take a strict approach to exemptions from the duty to accommodate. That is to say, exemptions are to be permitted only when they are reasonably necessary for the achievement of legitimate objectives.

The bar as what has to be proven in order to satisfy the undue hardship requirements have been raised considerably by the recent 2007 decision by the Supreme Court of Canada in Council of Canadian Disabilities v. Via Rail of Canada.36 The majority decision was given by Abella, J.

I will now quote the relevant parts of her judgment in that regard namely:

Paragraph 121 at page 698 she states:

"The concept of reasonable accommodation recognizes the right of persons with disabilities to the same access as those without disabilities, and imposes a duty on others to do whatever is reasonably possible to accommodate this right."

At paragraph 121

"The discriminatory barrier must be removed unless there is a bona fide justification for its retention, which is proven by establishing that accommodation imposes undue hardship on the service provider…"

At paragraph 122

"This Court noted that it is “a cornerstone of human rights jurisprudence . . . that the duty to take positive action to ensure that members of disadvantaged groups benefit equally from services offered to the general public is subject to the principle of reasonable accommodation”, which means “to the point of ‘undue hardship’”.

At paragraph 127

"The employer or service provider has made every possible accommodation short of undue hardship." (my emphasis)

The foregoing comment by Abella J connects with the earlier comments regarding the decision of Grismer, supra that the service provider has had to have made every possible effort to accommodation short of undue hardship.

At paragraph 161 she goes on to state:

"Accommodation…must be such as enables persons with disabilities to access as independently and seamlessly as possible. Independent access to the same comfort, safety and security (as others in society)…This is the goal of the duty to accommodate to render those services and facilities to which the public has access equally accessible to persons with and without disabilities."

36 Council of Canadians with Disabilities v. VIA Rail Canada Inc., [2007] 1 S.C.R. 650, 2007 SCC 15

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This is totally analogous to the obligation on the part of school systems to provide accommodation for persons with special needs. The right to equal accessibility is not just to be able to gain access to something but to access the same in a meaningful manner so that the individual "independently and seamlessly" enjoys the same degree of dignity and security as enjoyed by those without disability. This is a particularly important finding for those who have cognitive disabilities by the highest Court in Canada.

Appropriate methods of accommodation developed by trained personnel specifically related to individualized need, is absent for far too many special needs students in school. It is about time that systems of education fully carry out their obligations to accommodate those children as is clearly enunciated by the Supreme Court of Canada.

XII. SUMMARY

As a result of the series of judgments in the Supreme Court of Canada which are referred to in this paper, statements of principle have emerged from these judgments. I would describe them as foundation principles from which the achievement of fairness, justice and equality in the school system spring. In my view these principles are universal in nature and comprise a human rights lens by which progress, especially with regard to special needs children in the education system, is to be observed, measured and then implemented.

These principles are as follows:

1) The Charter of Rights and Freedoms being constitutional and the Human Rights Codes being quasi constitutional there are fundamental laws which declare public policy. They have precedence over all other legislation which conflicts with the rights that the Charter and Human Rights Codes protect and advance.

2) The stated purpose of the Charter of Rights and Freedoms and the Human Rights Codes must not be interpreted narrowly or restrictively and the rights so enumerated must be given their full recognition and effect.

3) Protection of individual dignity lies at the very heart of human rights legislation. Equal treatment is that which furthers the promotion of individual dignity for members of disadvantaged groups.

4) The protection of equal rights is assured by guaranteeing both equality of treatment and equality of opportunity.

5) The provisions of the Charter and Human Rights Codes are to be purposively and generously applied so that the individual with disabilities will enjoy a real and not simply have a hypothetical right to equal opportunities like other individuals in order to make for themselves the lives that they are able and wish to have and to assure their fullest possible integration into and participation in society.

6) Equality does not mean receiving the same treatment, it means entitlement to equality of benefit, opportunity and protection.

7) The purposive approach to one's right to an education in the most enabling environment must be applied according to the individuals identified needs.

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8) In considering whether any rights arising under the Charter and Human Rights Codes have been breached, the substance of the practice must be considered. This includes examination of matters such as human dignity, self-respect and the right to be recognized as a human being equally deserving of concern, respect and consideration.

9) Governments and their delegatees, the public school system, have a social contract with each and every child to provide that child with what is in the best interests of that child. Only when that social contract is enforced and in a timely fashion, will the right to equality and to be free from discrimination become a reality for special needs children.

The common responsibility of all those involved in the system of education is to ensure that every special needs person receives services appropriate to their specifically identified and individualized needs in a timely fashion. For any such service to be considered as being appropriate, it must be based on correctly identified needs and carried out by competent, trained persons using appropriate resources in the appropriate environment. This responsibility can only be met if we collectively commit ourselves to guarantee to all people with disabilities these basic rights.

If those in the system of education fail to do what is necessary as co-advocates with the parents and their special needs children to fulfill that guarantee, then the right to equality promised by the Canadian Charter of Rights and Freedoms and the right not to be discriminated against as promised by Human Rights Codes and the decision by the Supreme Court of Canada previously referred to will be nothing but ashes in the mouths of individuals with learning disabilities in Canada. Indeed, in the late Justice Dixon's words, if the system of education fails to do what it should, it brings the system of justice in Canada into disrepute.

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Identification and Early Intervention for LD: A Public Policy Perspective

2008 World Summit - Learning Disabilities: Fact or Fiction

Niki Wosnack, Assistant Deputy Minister

Agenda

1. Paradigm shift

2. Where we are

3. Where we need to go

4. Risk and protective factors

5. Supports in Alberta

6. Public policy direction

114

Paradigm Shift

FROM TRADITIONAL TO RESPONSIVE

Deficit-based Asset-based

Silos Integrated services

Expert driven Family and child/youth centered

Group intervention Individualized intervention

K12 Across the lifespan

“One-Shot” formal assessment Continuum of assessment and intervention

“Point and blame” Shared strategies and solutions

Pre-service training Lifelong learning

Cost of Status Quo — Canadian Context

Putting a Canadian Face on LD(PACFOLD Research) – July 2006

Six markers used:

Parent/family

Employment

Education

Finances

Personal/social functioning

Health

Statistics Canada Data Setsincluded:

1991 – Health and Activity Limitation Survey

2001 – Participation and Activity Limitation Survey

2001 – Canadian Community Health Survey

2001 – Youth in Transition and PISA

115

PACFOLD — Health Factors

Age Adults with LDGeneral

Population

% that believe their health is excellent to very good

2229 39% 70%

% that believe their health is excellent to very good

3044 37% 69%

% parents of child with LD report no depressive

symptoms

N/A 12% 20%

PACFOLD — Health Factors (continued)

Age Children with LDGeneral

Population

Ear infections 67 45% 24.1%

Allergies 615 28.1% 17.2%

Low birth weight 615 12% 5.7%

116

PACFOLD — Education Factors

AgeChildren

with LD

General Population

Early School Leavers 1621 61.4% 46.5%

Less Than HS

Completion

1621 13.9% 18.5%

Attend Trade School 1621 16.7% 19.6%

Attend University 1621 8% 15.4%

Early School Leavers 2229 28.3% 14.9%

Less Than HS

Completion

2229 19.5% 12%

Attend Trade School 2229 30.1% 35%

Attend University 2229 21.7% 38%

PACFOLD — Economic Factors

Age LD Non-LD

Earned no income

in 2000

3044 55% 14%

Worked in prior

year

1621 57% 76%

Worked in prior

year

2229 51% 89%

Worked in prior

year

3044 51% 89%

Live at home1621 86% males

75% females

86% males

80% females


75% females

36% males

25% females


9% females

7% males

4% females

117

Asset-based

“The really nice thing about being imperfect . . .

is the joy it brings to others!”

(Ashleigh Brilliant)

Integrated Services

Education

Justice

Aboriginal

RelationsAdvanced

Education

“How far would Moses have gone if he had taken a poll in Egypt?”

Harry Truman

118

Responsiveness-to-Intervention (RTI)

14

Primary Instruction (~80%)School-/Classroom-wide

Systems for All Students,

Staff and Settings

Secondary Intervention (~15%)Specialized Group

Systems for Students with

At-Risk Performance

Tertiary Intervention (~5%)Specialized Individualized

Systems for Students with

Intensive Needs

~80% of Students

~15%

~5%

Continuum of School-Wide Instruction

Adapted from”What is School-Wide PBS?”

Family and Child/Youth Centered

“You don’t build trust over the wire. Building trust takes flesh and blood.”

Lipnack and Stamps

119

Individualized Intervention

“Contentment – the smother of invention.”Ethel Mumford

Across the Lifespan

“Learn from the mistakes of others.

You can’t live long enough to make them all yourself.”

Sam Levenson

120

Risk Factors - Preschool(National Joint Committee on LD, 2006)

Screening

Examine risk/protective factors

Examples of Peri-natal Conditions

Low apgar scores

Low birth weight

Hospitalization (longer than a day in neo-natal unit)

Difficulty sucking, swallowing

Chronic ear infections

Risk Factors – Genetic Environmental Conditions (National Joint Committee on LD, 2006)

Family history of LD

Adopted child status

Family history of oral/written language problems

Exposure to harmful substances/toxins

Limited exposure to language at home, in child care, etc.

Poverty

Chronic Stress

121

Risk Factors – Developmental Milestones (National Joint Committee on LD, 2006)

a) Delays in cognitive milestones, comprehension and/or expression of oral language (e.g., difficulty

understanding simple directions, monotone language, inappropriate language, immature syntax

b) Delays in emergent literacy skills

c) Delays in perceptual motor skills

Risk Factors – Protective Factors(National Joint Committee on LD, 2006)

Access to quality pre-, peri-, and post-natal care

Maternal education

High quality learning opportunities

Multiple supports

122

Multiple Informal Assessments

“It’s what you learn after you know it all that counts.” James Wooden

Observation

Strategies

Strategies

Strategies

Strategies

Screening

Checklists (Informal assessment of families)

Individualized Strategies

Formalized Assessment, Referral and Intervention

Shared Strategies and Solutions

“In everyone’s life there is a little cactus —

you make the choice of whether or not you want to sit on it.”

123

Supports Across Ministries (0-6)

Children and Youth Services

EducationHealth and

Wellness

Program Unit Funding (ages 2.5 to 5 years)

Mild/moderate Disabilities (ages 3.5 to 5 years)

Child Care

Inclusive Child Care

Parent Link Centres

Pre-natal Education and Support Services

Newborn Metabolic Screening

Child and Youth Nutrition

Preschool Developmental Screening

Supports Across Ministries (School Aged)

Children and Youth Services

EducationHealth and

Wellness

Special Education

Resources

Funding

Programs

School Aged Child Care

Parent Link Centres

Screening, Assessment and Diagnosis

Rehabilitation Support Services

Mental Health Services

124

Public Policy Direction

Remove barriers to integrated services

(e.g., Alberta Children and Youth Initiative)

Place more emphasis on building capacity

Training supports/professional development

Community-based services

Build systems to gather/use data to improve outcomes

(e.g., Child and Youth Data Lab)

Establish collaborative partnerships

(e.g., Mentoring)

Identification and Early Intervention for LD: A Public Policy Perspective

2008 World Summit - Learning Disabilities: Fact or Fiction

Niki Wosnack, Assistant Deputy Minister

125

Interventionand Special Education

Learning Disabilitiesin Childhood

and Adolescence:

Maureen W. LovettThe Hospital for Sick Children and

University of Toronto

Bringing research-based reading interventions into community classrooms

and evaluating their efficacy . . .

The Learning Disabilities Research Program

126

Improved mental health outcomes for individuals.

Increased occupationaland economic opportunities.

Participation in information age.

Reduced maternal and infant mortality rates and healthier families for societies.

Access to post-secondary education.

Effective interventions andbetter literacy outcomes mean . . .

Literacy standards and health outcomes

In 2003, 42% of adult Canadians lacked the literacy skills considered necessary to cope in modern society.

127

More than 3 million adult Canadians are barely literate.

Literacy scores have dropped for young Canadians aged 16-25 whose parents had little education.

128

Literacy and Numeracy. . .academic foundations for adult life

Literacy and numeracy competencies affect educational opportunities, economic propects,

employment options . . .

A B C D E F G H I J K L M N

O

Reading-BasedLearning Disabilities

Of all children identified as LD in schools, 80-90% are primarily impaired

in reading . . .

A B C D E F G H I J K L M N

O

129

Reading Disabilities:A Model for the Study of LDs

and Other Developmental Disorders

Prevalence: High rates.

Genetics: RDs run in families.

Biological correlates: Different patterns of brain activation.

Defining deficits: Word reading accuracy and rate.

Diagnostic profile: Inability to manipulate individual speech sounds in words

Learning DisabilitiesAre Not Outgrown

Without effective intervention, learning disabilitiesare life-long, chronic, handicapping conditions . . .

Reading: Of children diagnosed with RD in Grade 3, >70% remain RD in adulthood

Math: Of children with math problems in Grade 5, 95% were in the lowest 25% in Grade 11

(Shalev et al., 2005; Shaywitz et al., 1999)

130

The Problem

Without effective intervention, learningdisabilities are life-long, chronic,handicapping conditions, however . . .

Practice not guided by evidence

Nonspecific or minimal expectations

Insufficient knowledge base, teacher preparation,school-based resources

The best approach is. . .

PREVENTION!

131

Early intervention works!

We can prevent at least 70% of later-identified LDs with systematic early intervention of at-risk children.

Research studies demonstrate that 70%-90% of at-risk children in Kindergarten-Grade 2 can learn to read at grade level with effective early intervention.

Developing and evaluating methodsof remediating language learningproblems in children

(>3000 children and adolescents with severe reading disabilities seen in our laboratory classrooms . . .

The Hospital for Sick Children‟sLEARNING DISABILITIES RESEARCH PROGRAM

132

Our Research-Based Interventions:RD Children Remediated in Grades 1, 2, or 3

Small group intervention (1:4 ratio; 125 hours of intervention).

Systematic linguistically-informed instruction in reading and text comprehension skills.

Multiple component remediation: Trained phonological, strategic, semantic, comprehension, and fluency- related skills necessary for reading development.

Universal early screening for academic risk

Access to effective early intervention

Teacher preparation and confidence

Regular progress monitoring

Access to booster interventions when needed

Early intervention works!

133

When learning disabilitiesare not

remediated early . . .

. . . the gap widenswith every grade

for children and adolescents withlearning disabilities . . .

Finding effective remediation

134

Effective intervention teaches academic skills

Training in motor,visual, neural, or cognitive processes without academic content does notlead to better academic outcomes for children with LDs (Fletcher et al., 2007).

Good interventions can improve skill levels and brain function (fMRI)

Good remedial instruction can normalize the brain activation profiles of children with reading disabilities

Effective phonologically-based remediation can facilitate the development of those neural systems which underlie skilled reading.

(S.E. Shaywitz et al., Biological Psychiatry, 2005)

Effective Remediation ImpactsBrain and Behaviour

135

Address the learning deficits directly.Teach necessary skills.

Do not circumvent the problem: Children with auditory processing/letter-sound learning problems need to learn how to decode.

Instruction must be explicit, direct, well-organized and allow cumulative review of previously learned content: >75 studies reviewed by NRP (2000).

Give more instruction.

Increase the amount of instructional time. Children with LDs need more—more time and more intensive instruction to acquire missing skills.

136

Instruction and InterventionTier 1: Enriched classroom instruction

(evidence-based programs, 90 min on reading)

Tier 2: More intense intervention (small group, classroom setting)

Tier 3: Special Education placement (intervention of greater intensity and duration)

Issues in the remediation ofacademic skill deficits

Understanding normal development of that skill (accuracy, speed, automaticity and consolidation)

Teaching for transfer

Teaching children to be strategic

137

Ineffective strategies for new learning Does not use what s/he does know Does not „chunk‟ word/problem into smaller parts Does not have good “learning-to-learn” strategies

Failure to attribute success and failure toown efforts

Core Learning Problems

Teach children to be strategic

Struggling readers need to…

Acquire effective reading strategies

Learn how to apply reading strategies (decoding, comprehension)

Learn how to monitor and evaluate application of multiple strategies

138

Before After

“why” for way “unintelligible”

“wall” for who “disengaged”

“but” for put “needlessly”

“leave” for left “mistakenly”

“moon” for money “uncomprehendingly”

Remedial Gains After Strategy InstructionA 10 Year Old Disabled Reader

EmpowerTM © The Hospital for Sick Children 2006

An Integrated Phonologicaland

Strategy Training Program*

* The research version has been known as the PHAST Reading Program

EmpowerTM Reading

139

1. Acquiring prerequisite skills: Acquisition of letter sounds 120 Keywords Vowel and variant vowel pronunciations Affixes

2. Training on the five decoding strategies.

3. Strategy practice on difficult words using a reciprocal teaching model.

4. Application of strategies during text reading.


EmpowerTM Reading Program Lessons

Sounding Out: strand sss + t + rrr + aaa + nnn + d

Rhyming: limerick (him)(her)(kick)

Peeling Off: unrelenting (un)(re)lent(ing)

Vowel Alert: head bead break

seam? great? breath?

SPY: dogmatic dog mat ic


EmpowerTM Word Identification Strategies

140

Apprenticeship Model

Modelling: Students are apprentices to an expert reader (initially the teacher, later students take turns as expert)

Scaffolded instruction: framework of integrated foundational skills and strategies taught

Dialogue structure for learning: seeds for later self-talk

Explicit teaching of prerequisite skills for successful strategy use

Explicit teaching of self-monitoring and evaluation

The Rhyming Door

141

brandand

thermostaticcat

her go

kick

142

The Peeling Off Tree

Single Vowels Vowel Pairs

at a ate bead ea head/great

end e he glow ow cow

it i hi zoo oo look

on o go pie ie chief

up u use

cry y babygym

C-Alert

cat/nice

G-Alert

go/gym

Vowel Alert

143

Vowel Alert Stoplight

SAMPLE DIALOGUEVowel Alert Strategy

“When I see ea in a word, first, I‟ll try ee, then, I‟ll try

e. Then, I‟ll try a, and see what gives me a real word.

First, I‟ll try ee. I sound out the word and see if it

makes a word I know: breeth. It doesn‟t make a real

word, but I don‟t give up. I go on to the next step.

Now, I‟ll try e: breath. Yes, that‟s a real word! My

strategy worked: First, I tried one sound, then, I tried

another. I was flexible, I stuck at it, and I got it!”

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leatherybeadheadgreat

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Are these programs equally effectivefor students of differing

SES, IQ, and language backgrounds?

Do program benefits extend to disadvantaged students?To lower-IQ students?

To English language learners?

16

19

22

25

28

31

34

37

40

43

46

49

Pre 35 hours 70 hours Follow-Up

WR

MT

-R W

ord

ID

Raw

Sco

re

Average SES

Low SES

Did children of different SES levelsmake equivalent gains?

(N=211; No control group)

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15

20

25

30

35

40

45

50

Pre 35 hours 70 hours Follow-Up

WR

MT

-R W

ord

ID

Raw

Sco

re

Average IQ

Low IQ

Did children of different IQ levelsmake equivalent gains?

(N=211; No control group)

35

37

39

41

43

45

47

49

51

53

Pre 35 70 100

Time of Testing

Ga

ins

in I

tem

s C

orrectl

y I

den

tifi

ed

Control

EFL

ELL

Do children of different languagebackgrounds make equivalent gains?

147

These findings suggest: Addressing multiple core deficit results in faster

learning and superior outcomes over time.

These research-based remedial programs are equally effective for students of differing SES, IQ, and language backgrounds.


Is it too late to interveneif a child still cannot read going into high school?

148

Specific reading disabilities become associated with:

Global deficits in reading comprehension.

Poor strategy use in content area learning.

Widespread academic underachievement in higher grades.

(Moats, 1994)

A profile of less specificity over time?

BUENOS AIRES, Argentina—

Saying she still hopes to live many more years, an illiterate 110-year-old Argentine woman has started learning to read and write to prepare herself for the challenges of the next century.

“I want to learn reading and writing as one has to be prepared for the future,” said Concepción Fernández, who lives in the northern province of Chaco. . .

—Reuters News Release, 1999

Argentine woman, at 110,takes up reading lessons

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PHAST PACESA Secondary School Literacy Program

Learning Disabilities Research Program, The Hospital for Sick Children

PHAST PACESScope and Sequence

Decoding Track(30 Minutes)

Text Knowledge Track(15 Minutes)

Metacognitive Track(15 Minutes)

80 Hours of Instruction(60 Minute Lessons)

150

investigations researchers

microecosystem photosynthesis

autotroph metabolism

ecological niche thermodynamics

Challenge Words Ecosystems

Gains in Word Attack and Passage Comprehension: High School

72

74

76

78

80

82

84

Pre Posttest Follow-up

Control

PACES WordAttack

PACES PassageComprehension

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READING

New partnerships tohelp children struggling

to learn to read

2006-2008

Toronto Catholic District School BoardWaterloo Region District School Board

Dufferin-Peel Catholic District School BoardHamilton-Wentworth District School Board

Peel District School BoardPeterborough Victoria Northumberland and Clarington Catholic District School Board

Building capacity in Ontario schools

Learning Disabilities Research ProgramThe Hospital for Sick Children

Maureen W. Lovett Léa Lacerenza Kimberley Lewis

Karen A. Steinbach Denis Murphy Sarah Bauer

Jan C. Frijters Tammy Cohen Denise Murnaghan

Maria De Palma Debbie Boland Sarah Gatopoulos

Meredith Temple A. Van Oorschot-Settle Michaela Evans

Jennifer McTaggart Glen McLeod Naomi Badger

Jennifer Goudey

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National Institute of Child Health and Human Development (NICHD) [1996-2001; 2001-2006]

Institute of Education Sciences (IES) [2006-2010]

Centre of Excellence in Child and Youth Mental Health at CHEO [2005-2007]

Canadian Institutes for Health Research [2002-2007]

Medical Research Council of Canada [1999-2002]

Recent Operating Grants

Funding our Research

RESEARCH helps…

. . . kids all over the place!

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READINGThe research version of EmpowerTM has been known as the PHAST Reading Program

Interventionand Special Education

Learning Disabilitiesin Childhood

and Adolescence:

Maureen W. LovettThe Hospital for Sick Children and

University of Toronto

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TRANSITIONS

Dr. Nancy McIntyre

Larry McCloskey

Carleton University

Paul Menton Centre for Students with Disabilities

World Summit Learning Disabilities

Lake Louise – 2008

Important Transitions

To post-secondary education

Supports

Specific transition programs

To the future:

independence,

career pursuits

social engagement

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Supports inPost-secondary

Education

Post-secondary & LD:a Canadian perspective

Human Rights (Federal & Provincial) model

and/or

Provincial Education acts

Institutional Responsibilities on basis of Human Rights model

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High school / PS comparisons

Supports on the basis of disability, not a disorder

Documentation requirements

Accommodation differences

Expect independent learning once strategies are in place

Post-secondary services across Canada

Individual government funding supports

Trained professionals

Accommodation

Technology supports

What Canada CAN and DOES provide:

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Basis of Provision

Individualization

Integration

Independence

Post-secondary original LD services

Accommodation

Awareness within Post-secondary community

Based on IPRC or psycho-educational assessment

Assistance with development of individual strategies at some post-secondary institutions

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Ontario Experience

LOTF - Learning Opportunities Task Force

“Too few students with learning disabilities get the help that they need to make the transition to College or University. To help these students realize their potential, we will establish pilot projects at the college and university level, to provide real help to learning disabled students in a meaningful way.”

-- 1997 Throne Speech Hon. Ernie Eves,

then Treasurer, and subsequent Premier of Ontario

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LOTF - Learning Opportunities Task Force (2)

Funding from Ontario Ministry of Training, Colleges and Universities for 5-year research study to develop most effective post-secondary supports

1997 to 2003

10 colleges and universities developed 6 different support programs

Data collected, including numbers, program evaluation, and student experiences

Supports available for post-secondary

students?

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Post-secondary recommendations include:

Learning support

Technology supports

Transition programming

Accessible assessment

Social supports

Learning supports

Individual strategies, based on assessment report of strengths

Improving self-knowledge

Accommodation supports

Training in self-advocacy skills

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Technology supports

Assistive Technology lab with appropriate software and ‘hardware”

E.g., writing, reading, organization software

Digital recorders

Reading Pens

Electronic organizers

*** Individualized ongoing AT Training*** Recommendations for purchasing

One-size does not fit all!

Social supports

Consistent coordinator as a support resource

Peer mentoring

Counselling (academic related to disability)

Opportunity to build on strengths

1. Assist with transitions of younger students

2. Opportunities to discuss their LD with other students having the same experiences

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Transition toPost-Secondary

Education

Transitions programs

Pre-existing model (Project Advance) Pros pre-assessment and assistance with understanding

individual LD as shown in psychoeducational report

Interaction with LD peers

Held in summer, so not interfering with other learning requirements during academic year

Learning skills specific to post-secondary level

Cons: Small attendance – giving up last free summer before

college or university, reduced ability to earn money

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Transitions programs (2)

Current models, after funding

Types

Modeling original, with time and content variability

On-line and/or computer interaction models

Hybrids

Working with area school boards for general transitioning information across the province, followed by orientation specific to the Institution in the fall

Across-the-board small numbers, except latter model

LOTF led to documenting importance of:

Early supports

Accommodation based on individual needs

Supports reflecting changing needs

Importance of metacognitive training as early as possible

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Parental Transitions

Students reluctant to request supports

Moving from parent advocate to parent coach

Transition to Independence, Career Pursuits, and Social Engagement

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Where’s the proof?

There is a clear assumption:“…attending and graduating from post-secondary

educational programs improve employment opportunities, which provide higher wages, which increases financial and personal independence and thus enhances the overall quality of the lives of its graduates; the question remains as to whether this assumption is true for young men and women who have learning disabilities.”

(Levine and Nourse, 1998)

Transitions:A Longitudinal Study

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LOTF findings on post-secondary LD success:

Success at Post-Secondary level is based on:

Individualized supports at elementary and secondary levels

Facilitated transition into post-secondary

Post-secondary supports are available, and they are used

Transitionsworking question

Did the post-secondary pilot supports

accommodate a student’s LD in a manner

specific to the educational environment,

or

Did the supports teach transferable skills and personal resiliency in a way that allows for former pilot students to take control of and change their own lives?

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Transitions Goals

1. Assist in making positive changes throughout their lives

2. Provide information for change to public policy Fiscal responsibility

Program effectiveness

3. Inform post-secondary settings of evolving programs

4. Raise awareness of employment and career sector of abilities and needs of adults with LD

5. Broaden & maintain relevancy of program effectiveness

Need for a longitudinal study

Learning disabilities are a life-long condition

As a result of information collected from the LOTF study, the need for transitional support into the workforce became evident

Important to track future success resulting from post-secondary supports

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Difficulties of longitudinal study

Maintain participant involvement for duration of the study

Maintain researchers’ commitment for duration

Maintain source of funding for (10 yr.) duration*

In addition, this study sought participants two years after they left school or the support program!

The TRANSITIONS study is generously being funded by the Ontario Ministry of Training, Colleges and Universities (MTCU)

Why a longitudinal study?

Risky research

Labour intensive

Expensive

Difficult to engage participants

Suffer from high attrition rates

Solutions:

Transitions Portal

www.transitionsportal.ca

Trends Discussions

Continuous follow-up with participants (emails, thank-you cards, phone calls) Plusongoing, on-line postings & support

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Methodological issues for this study

Transitions research is dynamic

Surveys refined annually to probe new issues

No control group available

Therefore, within-subject comparisons year-to-year

Comparison with ‘general population’ studies

Methodology – annual survey

Includes qualitative and quantitative questions:

Education

Employment/Career

Social issues

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Methodology - participants Post-pilot students, graduated &/or withdrawn

from program

Age: 21-51

Gender: 45% male, 55% female

Retention rates: 2004 – 210 responses from 1242 pilot students 17%

2005 – 196 participants (93% of 2004 responses)

2006 – 141 (67% of 2004 number)

2007 – 119 (57% of 2004 number)

2008 (currently being collected)

Methodology – Portal

Portal as a longitudinal tool

www.transitionsportal.ca

On-line surveying

Computer savvy cohort

Interactive & informative

Strategy of engagement

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Transitions trends:Continuous trends - 1

1. Participants place high value on post-secondary education

2. Higher than average retention rate in post-secondary education

3. Most common reason for not graduating: inability to pass required courses

4. Able to combine post-secondary education and work reasonably well

5. Transitions participants are living with parents


6. Those leaving post-secondary & employed full-time are generally earning comparable salaries to graduates in general population

7. Field of study likely influences low salaries of Transitions participants

8. Female Transitions graduates more likely to experience high rates of under-employment than males

9. Transitions participants have higher unemployment rate than general population

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10. High emphasis on educational and career goals, while social goals remain lower

11. High number engage in physical activity

12. Resiliency reflected in social relationships

13. Cautious self-disclosure of LD in workplace

Transitions trends:New trends - 1

1. Financial concerns impacting on life decisions (2006)

2. Upon graduation, majority feel prepared to seek employment

3. Lower salaries and under-employment compared to the general public

4. LD - higher salaries and higher rate of employment than other Ontario residents aged 22-29

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5. A high number of participants engage in volunteer work

6. Significantly more women than men self-disclose at work

7. Few currently employed use accommodations and/or assistive technology at work

8. Transitions participants have good relationships with their co-workers


9. An overwhelming percentage experience job satisfaction

10. Overall Transitions participants feel they have learned how to manage their learning disability well

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Bottom Line…

Transitions participants are generally graduating, working, living and thriving as successfully as the general population of a

similar age.

So now we have shown:

Properly supported & motivated, students with learning disabilities can be truly successful

Early intervention & diagnosis coupled with seamless support and transition throughout the educational experience is a good – essential social investment

Participants’ collective success challenges our assumptions about abilities & limitations we may be ascribing to the phenomenon of LD

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Therefore: More accurate diagnosis

greater chance of appropriate supports & strategies

Earlier supports

greater chance of positive self-esteem

Higher self-esteem

greater chance of seeking post-secondary education

Higher education

greater chance of satisfactory employment

More Universal Instructional Design

greater chance of putting LD in perspective (learn in a different way)

Our recommendations and points for discussion (1)

Teachers:

1. Comprehensive teaching training

Psychologists:

2. Consistent definition and agreed-upon criteria for diagnosis

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Primary school:

3. Early identification of specific learning problems

4. Leading to initial assessment by qualified psychologist

5. Comprehensive annual individual education plans based on ongoing assessment

6. Adaptive technology and training begins early


Secondary school:

7. Metacognitive training to begin developing their own strategies for academic success

8. Annual review of education plans with students taking active role in the process (create life-long independent learners)

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Post-Secondary education:

9. Enter with transition support and progressive education plans; psycho-educational updated assessments available

10. Career counselling and personal counselling available throughout post-secondary

11. Assistance & support for beyond post-secondary

Jobs and careers

Mentoring in the workforce

Opportunities in place to build resumé

TRANSITIONS

Dr. Nancy McIntyre

Larry McCloskey

Carleton University

Paul Menton Centre for Students with Disabilities

World Summit Learning Disabilities

Lake Louise – 2008

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The National Children’s Study

Once-in-a-Lifetime Opportunity to Address Some Critical Issues about Environmental and Genetic Etiologies of Psychiatric and Learning Disorders

James Swanson, Pathik Wadhwa, Dean Baker, and Feizal Waffarn

Outline of Presentation

1. General background on the NCS

2. Rationale for specific features of the NCS

3. Current NCS Study Plan and Protocol

4. Procedures for refining and finalizing protocol

5. Participation in analysis and use of the data

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1. General Background for the NCS Dec

2004: Study Blueprint Released

National Children’s Study Sample:Representative of All Births in USA

All Births in the Nation

Sample of Study Locations

Sample of Study Segments

Sample of Study Households

Sample of Study Women

105 Locations(counties)

Selection of neighborhoods

All households within neighborhoods

All eligible women in the households - ~1.5 million

~4 million births in 3,141 counties

Sample of Study Children

105,000 births180

National Children’s Study Locations Vanguard Centers Selected in 2005

National Children’s Study Sample in Orange County

All Births in the County

Sample of Study Locations

Sample of Study Segments

Sample of Study Households

Sample of Study Women

Urban high-density population county

Strata to define large neighborhoods

15 segments selected with 65 to 1,667 households

All eligible women in households (~7,000)

~45,000 births per year

Sample of Study Children

250 births enrolled per year 181

Southern and Central CA (SCCA) Study Center for the NCS

Southern and Central CA (SCCA) Study Center for the NCS- Teams

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Selection of Segments in County

Orange County has 45,000 births per year.

Vanguard Center target is 250 births per year

Contact 12,000 households & enroll 7,000 women

Follow them until pregnancy and then to birth

Multi-stage sampling plan:

Strata: 15 with equal number of births (3,000)

Geographical Unit: 10-12 per stratum

Segment: 8-12 segments per GU

Segments consist of contiguous US census blocks

Blocks aggregated to have equal number of births

NCS Coordinating Center selected from segments

Used random selection of one segment per GU

Strata Specified for Orange CountyOne segment per strata randomly selected

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Strata Specified for Orange CountyOne segment per strata randomly selected

Birthing Hospitals in OC and OCCA Vanguard Center Facilities

Hoag- Newport Beach (≈ 4800)

St. Joseph-Orange (≈ 4600)

Fountain Valley Regional (≈ 4200)

Irvine

Facilities

Orange

Facilities

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Schedule of Visits (in the 2007 NCS Protocol)

14 face-to-face contacts over 21 year study period

Contacts most frequent early in the study

Between visits: ongoing data collection by phone, PDA, etc.

Enrollment 3 years

1st

Trimester5 years

2nd

Trimester7 years

3rd

Trimester9 years

Delivery 12 years

6 months 16 years

12 months 20 years

Broad Exposures and Outcomes

185

Framework and Theoretical Background for the NCS: Genetics

2. Rationale for the NCS Design

Why so many priority exposures and outcomes? Complex: multiple risk factors, interaction, comorbidities, traits

Different exposures-same outcome, same exposure-different outcome

Why large, representative community sample? Statistical power

Distribution of exposures and outcomes in the US population

Why this design, protocol, and sampling plan? Dense sampling early (before conception and during pregnancy)

Individual trajectories over time

Why this approach for evaluation of environment and genes?

GxE is basic unit of biological activity

Which genes (nuclear and mitochondrial DNA)

What genetic properties (SNPs and sequence, CNV, etc)

Expression (epigenetic, RNA, etc)

Analytic approach (systems biology)

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Complex Disorders, Vulnerability, and Developmental Origins of Health and Disease

Complex Disease and Disorders multi-factorial etiology

interactive not additive

Vulnerability and Developmental Processes inversely related to how well an individual is constructed

structural and functional integrity

of the brain and peripheral systems

Early exposures influence health and development Developmental Toxicology model

structural/functional damage

as a result of exposure to “toxins”

at critical periods of development. (e.g., lead exposure)

Predictive Adaptive Responses model

structural/functional integrity of physiological systems

a function of the degree of congruence/incongruence

of early and later environments (e.g., glucose levels)

n = 18

n = 16

n = 522

n = 587

NCS CohortN = 100,000

Cinn CohortN = 161

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n = 16

n = 33

n = 24

Dunedin Cohort N = 1047

NCS Cohort N = 105,000

n = 1600

n = 3300

n = 2400

Healthy People 2010 Goal:Reduce preterm birth rate to < 7.6%

YearUS

(Percent)

US

(Count)

1994 11.0 431,613

1995 11.0 424,455

1996 11.0 423,107

1997 11.4 436,600

1998 11.6 452,275

1999 11.8 460,853

2000 11.6 467,201

2001 11.9 476,250

2002 12.1 480,812

2003 12.3 499,008

2004 12.5 508,356 • Source: National Center for Health Statistics, final natality data.

• Retrieved October 12, 2007, fro www.marchofdimes.com/peristats. 188

Expected Number of Preterm Births in the NCS Birth Cohort

105,000 US, 12,000 CA, 1,000 OC births

March of Dimes PeriStat® figures for 2004

12.5% of births in USA are premature

10.7% of births in CA are premature

9.7% of births in OC are premature

Expected number of premature births

100,000 x 12.5% = 12,500 nationwide

12,000 x 10.7% = 1,284 statewide

1,000 x 9.7% = 97 countywide

Sample Size Considerations for the NCS: G and GxE Detectable Effect Sizes

Jim Gauderman, Ph.D., USC

Initial cohort size: 105,000; 3% per year loss to follow-upIncidence rates: 0.01, 0.05, 0.10, 0.20, 0.50, and 3.0%/yr

Initial study period: 5 years

March 2007 NCS/NHGRI Meeting (Discussion of the Nested Case Control Design)

Disease Incidence (%) Expected n----------------------------------------0.01 470.05 2350.10 (Autism-0.5%) 4700.20 (ASD-1.0%) 9380.50 (ADHD-2.5%) 2,3312.50 (Asthma) 11,1913.00 (ADHD-15%) 13,304

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Preterm Birth: Statistical Power for Genetic, Environmental, and GxE Effects

10% allele frequency and dominant inheritance modelEnvironmental exposure with 10% prevalence Marginal G and E effects of 1.5 in GxE calculations80% power, 0.0001 Type I error, 2-sided alternative

Genetic Main Effect GxE Interaction# Cases 1:1.5 1:10 1:1.5 1:1047 6.9 4.6 >30 >30235 2.5 2.1 >10 7.6470 1.9 1.7 7.1 4.2938 1.61 1.48 4.0 2.82,331 1.37 1.29 2.5 1.911,191 1.16 1.13 1.52 1.3613,304 1.15 1.11 1.47 1.33

3. Current NCS Study Plan(Mental Health, Cognitive and Social-Emotional Outcomes)

Periodic screening of all children starting in infancy with dimensional measures

More definitive evaluation of disorders for those with suspected abnormalities

Samples of behavior (e.g., videotapes) will be “banked” for future analyses in nested case-control studies

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The Role of Psychosocial and Behavioral Factors in the NCS

Exposures

▪ Independent predictors

▪ Interactions with other environmental factors

▪ Gene x environment interactions

Outcomes

▪ Psychiatric

▪ Cognitive

▪ Social/emotional health & development

Domains of Social Emotional Health & Development

▪ Social competence

▪ Attachment

▪ School readiness

▪ Emotional competence

▪ Temperament / personality

▪ Aggression

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4. Procedures for Refining and Finalizing NCS Protocol

July 2008: field test of recruitment and protocol

7 Vanguard Centers each with 250 births

a total of 1,250 for testing feasibility

2009-2011: implementation across the USA

105 Locations each with 1,000 births

a total of 105,000 in the prospective follow-up

The final protocol for stages of the NCS

Assessments of children at the ages of high risk

Instruments established between now and 2018

Opportunities to Suggest How to Collect Information on Children's Mental Health and Substance Abuse

2007 Draft of the NCS Study Plan and Protocol Instruments specified for pregnancy, birth, and infancy visits (to

age 1)

Conceptualization for domains for early childhood visits (ages 3 to 9)

Plans from prior workgroups for visits in adolescence (ages 12 to 20)

Opportunities for building on current plans Current phase of protocol for visits to age 1

Revisions after NAS and OMB reviews

Revisions after Vanguard Center pilot study

Next phase of protocol for visits to age 5

Input solicited and teams being formed192

5. Participation in Analysis and Use of the Data from the NCS

Public access data base

Will be released in waves

First data on pregnancy and birth outcome

Data from later phase as the 21-year protocol is implemented

Summary:The NCS Intends to Provide…

The answer to concerns about known exposures during pregnancy and childhood to potential toxicants and other exposures

The determination of absence of effects or benefit of exposures to various products important for our economy

The identification of some causal factors for a number of diseases and conditions of children with suspected environmental causes

The interaction of multiple causes including social-cultural-behavioral factors that result in multiple outcomes

The application of knowledge of the human genome to understand multi-factorial genetic conditions and gene-environment interactions

The identification of early life factors (developmental origins of health and disease) that contribute to many adult conditions

The establishment of a national resource to answer future questionsby using stored samples and extensive data for decades to come

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Closing

Attention Deficit Hyperactivity Disorder:The Multimodality Treatment Study of ADHD (MTA)

CHOC-UCI Initiative for the Development of Attention and Readiness (CUIDAR)

www.chadd.org; www.CUIDAR.net

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AHFMR Interdisciplinary Team: APRONAlberta Pregnancy Outcomes And Nutrition

Team Leader: Bonnie J. Kaplan1, PhD, Depts Pediatrics & Community Health Sciences

Team Co-Leaders: Catherine J. Field2, RD, PhD, Alberta Institute for Human Nutrition

Deborah Dewey1, PhD, Depts Pediatrics & Community Health Sciences

Additional Team Members:

Nutrition Rhonda Bell2, PhD, Anna Farmer2, RD, PhD, Linda McCargar2,RD,PhD

Recruitment Donna Manca2, MD, Maeve O’Beirne1, PhD, MD

Genetics Francois Bernier1, MD

Neonatology Nalini Singhal1, MD

Psychiatry Victor J.M. Pop3, PhD, MD, J. Steve A. Simpson1, PhD, MD

Child development Marja Cantell1, PhD, Libbe Kooistra1, PhD

Biostatistics Michael Eliasziw1, PhD, Laksiri A. Goonewardene2, PhD

1University of Calgary, 2University of Alberta, 3University of Tilburg (The Netherlands)

Focus on 2 Health Concerns

1. Increasing mental disorders

2. Increasing neurodevelopmental disorders

195

1. Mental disorders

Depression = leading cause of disability worldwide in 2000

In Statistics Canada’s last survey cycle (1998/99), about 2.5 million adults suffered from a depressive disorder = >10% of the Canadian population

Prevalence of clinically meaningful levels of depression in the pre- and post-natal period = 6 -13%

Prevalence of Perinatal Depression

0

2

4

6

8

10

12

14

1st …

1st …

3rd

… 1 … 2 … 3 …

1 ye

ar …

Major or Minor

%

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2. Neurodevelopmental disorders

Learning disabilities and ADHD: each = > 5% of the population

Autism Spectrum Disorders: at least 0.6% of the population (48,000 Canadian children)

American Pediatric Society now estimates that 20% school-aged children have a diagnosable developmental/mental disorder

Role of nutrition

Nutrient deficiencies have been associated with mood disorders, as well as with child development:

Vitamins: B-vitamins, and vitamins C, D and E

Minerals: calcium, chromium, iron, magnesium, zinc, selenium

Other nutrients: choline, omega 3 fatty acids

197

Relevance during gestation

Even in westernized countries, pregnant women are often deficient in certain nutrients, especially

iron, zinc, calcium, magnesium, folate, omega 3 fatty acids, vitamins D and E

Deficiencies have been shown even in middle-to upper-level-income women

Overall Objective

To determine the relationship between

maternal nutrient intake and status during pregnancy and

1. the mother’s mental health

2. perinatal outcomes

3. child’s neurodevelopment and cognitive function

198

Sample Recruitment

Sampling frame:46,500 pregnant women over 18 months (Edmonton &

Calgary)

Enrollment sample:10,000 pregnant women

(21.5% sample)Non-participants:36,500 (78.5%)

Final sample for analysis: 8,000

Expected drop outs: 2,000 (20%)

Substudy for complete assessment at age 3 yrs: 1400

Data collection

Some via interviews

Much via the internet (with telephone interviews as an alternative)

Sensitivity to participant burden

199

< 18 wks 4 wks later 24 wks 36 wks 4 – 6 wks 12 wks 12 mos 24 mos 36 mos

Interview● Recruit● Screen● Consent

● Nutrient status

Interview● Maternal mood & anxiety

● Obstetric hx● Nutrient status

Interview● Maternal mood,

anxiety● Delivery hx

● Nutrient status

Substudy Interview● Infant dietary behaviour

● IQ, neuropsych, motor skills● Maternal mood, anxiety

Delivery● Cord blood

● Obstetric & neonatal variables

Internet or alternative●Nutrient intake & physical activity

●Maternal mood, anxiety

Internet or alternative● Nutrient intake & physical activity

● Maternal mood, anxiety● Infant feeding & temperament; child development

● Exec function & behaviour at 24 & 36 mos

Ancillary Projects

21 have been defined

E.g., descriptive study of nutrient intake and physical activity in pregnant women

E.g., relationship between prenatal thyroid levels and neonatal outcome at delivery

E.g., predictive value of gestational nutrient status for colic and infant temperament

E.g., predictive value of gestational nutrient status for congenital anomalies other than neural tube defects

200

Contact information

[email protected]

[email protected]

[email protected]

AHFMR Interdisciplinary Team: APRONAlberta Pregnancy Outcomes And Nutrition

Team Leader: Bonnie J. Kaplan1, PhD, Depts Pediatrics & Community Health Sciences

Team Co-Leaders: Catherine J. Field2, RD, PhD, Alberta Institute for Human Nutrition

Deborah Dewey1, PhD, Depts Pediatrics & Community Health Sciences

Additional Team Members:

Nutrition Rhonda Bell2, PhD, Anna Farmer2, RD, PhD, Linda McCargar2,RD,PhD

Recruitment Donna Manca2, MD, Maeve O’Beirne1, PhD, MD

Genetics Francois Bernier1, MD

Neonatology Nalini Singhal1, MD

Psychiatry Victor J.M. Pop3, PhD, MD, J. Steve A. Simpson1, PhD, MD

Child development Marja Cantell1, PhD, Libbe Kooistra1, PhD

Biostatistics Michael Eliasziw1, PhD, Laksiri A. Goonewardene2, PhD

1University of Calgary, 2University of Alberta, 3University of Tilburg (The Netherlands)

201

Systemic Change

A Critical Means of Achieving Equality for Students with

Learning DisabilitiesDr. Yude Henteleff, Pitblado LLP

2008 World Summit on Learning Disabilities

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Systemic Change(continued)

A Critical Means of Achieving Equality for Students with Learning Disabilities

Dr. Yude Henteleff, Pitblado LLP2008 World Summit on Learning Disabilities

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We should seek wisdom more than

anything else - the ability to make

value judgments, to know the

consequences of our actions, and to

learn from our mistakes. Given the

freedom to fail without censure,

students will often challenge

themselves to work hardest on their

weaknesses. Education is not received

- it is achieved. Education should be a

lifelong enterprise, a process

enhanced by an environment that

supports, to the greatest extent

possible, the attempt of people to “find

themselves” throughout their lives.

Seek to educate. Always. All ways.

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We should seek wisdom more than

anything else - the ability to make

value judgments, to know the

consequences of our actions, and to

learn from our mistakes. Given the

freedom to fail without censure,

students will often challenge

themselves to work hardest on their

weaknesses. Education is not received

- it is achieved. Education should be a

lifelong enterprise, a process

enhanced by an environment that

supports, to the greatest extent

possible, the attempt of people to “find

themselves” throughout their lives.

Seek to educate. Always. All ways.

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745 37th Street N.W. Calgary, Alberta T2N 4T1

(403) 270-9400

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Documents

World Summit on Learning Disabilities