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Title: Creating a Paradigm Shift in Early Intervention:


1
Creating a Paradigm Shift in Early Intervention
Goals and Progress of the Canadian Early
Intervention Project
  • Education Graduate Students Society Conference
  • Panel Presentation
  • March 10, 2007

2
Creating a Paradigm Shift
  • awareness is prerequisite to all acceptable
    changes (Kuhn, 1970)
  • with regard to human life, paradigm shift is a
    dynamic and interventional metamorphosis
    (Lloyd, 2005)
  • scientific advancement is not evolutionary.it
    is a series of peaceful interludes where one
    conceptual world is replaced by anothera
    metamorphosis or transformation driven by agents
    of change (Kuhn, 1962)

3
Purpose
  • To engage policy makers, practitioners, and other
    key stakeholders in specific discussion forums in
    the area of early childhood development, policies
    and practices to ultimately create a paradigm
    shift in Early Intervention (EI)

4
Need to know
  • Current practices in Canada with respect to
    families and children with developmental delays
  • Current service delivery frameworks in Canada for
    families and children with developmental delays
  • Current policies in Canada with respect to
    families and children with developmental delays

5
Panel
  • Ingrid E. Sladeczek, PhD, Primary Investigator
  • Associate Professor, School/Applied Child
    Psychology
  • Nancy Miodrag, PhD Candidate
  • Special Population of Learners
  • Jennifer Saracino, MA Candidate
  • School/Applied Child Psychology
  • Anastasia Karagiannakis, PhD Candidate
  • Special Population of Learners
  • Yaffa Tegegne, Faculty of Law
  • Ashleigh Yule, MA Student
  • School/Applied Child Psychology

6
Definition of Developmental Delay
  • Definition endorsed by the Disabilities
    Assistance and Bill of Rights Act (2000)
  • Looking at individuals from birth through age 9,
    who have a specific congenital condition,
    acquired condition, delay, or are at risk for
    meeting these criteria later in life, that affect
    the following areas of functioning self-care,
    receptive and expressive language, learning,
    mobility, self-direction, capacity for
    independent living, or economic self-sufficiency.
  • (http//www.cdl.unc.edu/psychology)

7
Current Obstacles Impinging Upon Policy, Practice
Service Delivery
  • Practitioners and researchers all recognize the
    need for interventions that have a strong
    empirical basis for efficacy. However, millions
    are spent on interventions that are not
    evidence-based (Eaves Ho, 2003 Freeman, 1997
    Jacobsen et al., 2005 Kozloff, 2005).
  • We must ask ourselves how to make the best use of
    limited resources and explore and identify other,
    possibly more effective models.

8
Other Challenges
  • Thousands of children in Canada have pervasive
    developmental disorders and the average Canadian
    annual cost is in excess of 3 billion
    (Simmermon, 2002).
  • Because of a lack of bridging between research
    and policy, sometimes policy decisions are made
    without a full understanding of the complexity of
    intervention effects.

9
Some Headlines
  • Families seek order requiring BC government to
    pay for the cost of treatment for children with
    ASD (Supreme Court of BC, April 2000).
  • Landmark decision made by the Supreme Court of
    Canada which essentially has absolved provinces
    from paying for intensive applied behaviour
    analysis for children with autism a novel,
    controversial, experimental, and a not a
    medically necessary service (The Montreal
    Gazette, November 2004--Auton Case, BC)
  • MRIs could unlock mysteries of Autism
    (Associated Press, April 12, 2004)
  • Parents of Children with Autism in Ontario Angry
    over Delays (Canadian Press, November 19, 2004)

10
Some Headlines
  • Nova Scotia launches Program for Children with
    Autism (Associated Press, December 2, 2004)
  • Ontario Parents sue Schools in New Autism
    Lawsuit (CTV News Staff, December 7, 2004)
  • Ontario Removing Age Limit for Autism Therapy
    (CTV News Staff, September 3, 2006)
  • Province should fund Lovaas treatment for
    Autism (The Vancouver Sun, November 23, 2004)

11
Headlines
  • Issues have underscored a glaring need for
    research in this area, the lack of clarity in
    public policy, and has stirred strong emotional
    reactions by family advocacy groups seeking
    specialized services for their children and
    policy makers concerns regarding types of
    services needed and who should pay for them.

12
What is Early Intervention?
  • We conceptualize Early Intervention (EI) as a
    systematically planned method of taking actions
    based on the childs needs during the early
    pivotal years of life.

13
What do we need for effective EI?
  • Guralnick (2003), for example, found that EI must
    be comprehensive, intensive, extended over time,
    individualized and delivered directly to the
    child.
  • Key factors for success include
  • Age of the child at the beginning of the
    intervention (Blackman, 2002, 2003 Corsello,
    2005 Ramey Ramey, 2003)
  • Intensity and amount of services provided
    (Guralnick, 2000 Smith, Groen, Wynn, 2000
    Wolery Garfinkle, 2002).
  • Parent involvement (Blackman, 2002 Guralnick,
    1998 Mahoney et al., 1999 McCollum, 2002 Ramey
    Ramey, 1998 Shonkoff Hauser-Cram, 1987
    Shonkoff Phillips, 2000).
  • Highly structured programs with frequent
    measurement of goal attainment, regular use of
    child assessment data, and monitoring and
    modification of instruction can increase
    effectiveness and positive outcomes (Beatson
    Prelock, 2002 Shonkoff Hauser-Cram, 1987
    Wolraich, Gurwitch, Bruder, Knight, 2005).

14
Child Outcomes
  • Researchers have demonstrated that children with
    developmental delays can achieve large,
    comprehensive, and lasting gains with appropriate
    interventions
  • (Birnbrauer Leach, 1993 Charman, 2003
    Couper, 2004 Fenske et al., 1985 Scheinkopf
    Siegel, 1998 Smith, Groen et al., 2000 Spiker,
    Hebbeler, Mallik, 2005).

15
National Blueprint for Canadian Families of
Children with Developmental Delays
  • What goals have we set out to accomplish in this
    EI project?

16
Goal 1
  • The development of an empirically based protocol
    that will guide screening, diagnosis,
    intervention, and evaluation decisions for health
    care professionals working with children with
    developmental delays from 0 to age 9 and their
    families.

17
Goal 1 (continued)
  • Domains of functioning that are being assessed
    include
  • Motor functioning
  • Speech-language and Communication
  • Cognitive functioning
  • Family
  • Behaviour/social-emotional
  • Medical/developmental
  • Neurology
  • Adaptive functioning

18
Goal 2
  • The evaluation of the impact of diverse private,
    not for profit, public and government EI centres
    in Quebec and Ontario wherein children and
    families will be followed for a 2 year time
    period, which will enable us not only to
    ascertain the overall impact of EI, but also to
    determine which intervention components are best
    matched to particular types of developmental
    profiles and family characteristics.

19
Goal 2 (continued)
  • Collect retrospective family and intervention
    data and establish baseline measures for all
    children using the new assessment protocol
  • Evaluate children every 6 months over 2 years
    using assessment protocol
  • Presently, 5 EI sites (i.e., government funded,
    not-for-profit, private, public) have been
    identified and will be compared
  • Analyse data and assess significance of early
    intervention factors and effect on outcomes
  • Disseminate results to EI centres

20
Goal 2 (continued)
  • Hold a teleconference with policy makers and
    panel of EI experts to discuss results.
  • Disseminate results to pediatricians,
    professional associations, parents, government
    health planning bodies and others.
  • Hold a conference with government and health
    ministry officials responsible for EI policy to
    discuss results.

21
Goal 3
  • The development of an inventory and analysis of
    EI models/centres across Canada, and
    identification of the most common
    characteristics, best practices, and critical
    success factors in EI that allows for the
    comparison of different service delivery
    frameworks.

22
Goal 4
  • A Public Policy Action Group is being constituted
    that will develop and implement specific
    strategies to
  • Identify and prioritize key stakeholders and
    decision makers in EI policies and practices
  • Identify key policy change agents, solicit their
    input on current perceived or actual deficiencies
    in policy, service, planning and practices and
    soliciting recommendations for lobbying and
    implementing change
  • Disseminate information on an ongoing basis
  • Engage stakeholders in specific discussion forums
    on creating a paradigm shift in EI
  • Develop a consensus of what changes are needed
    and recommend and implement a process for
    effecting these changes.

23
Closing Introductory Remarks
  • Our objective today is to inform and engage you
    in a dialogue regarding EI services and policies
    which will eventually lead to the creation of the
    National Blueprint for Canadian Families of
    Children with Developmental Delays.

24
Early Intervention Inventory
  • A survey of
  • early intervention services
  • across Canada

25
Purpose of the National Inventory
  • To analyze EI models/centres and their grouping
    of services in various private, not for profit,
    public and government sectors
  • To identify the most common characteristics, best
    practices and critical success factors in Early
    Intervention (as well as current gaps in service
    delivery)

26
Our Survey Instrument
  • 29 item instrument
  • 15-20 minutes to complete
  • Open ended and fixed response items
  • Types of Questions
  • Demographic information
  • Services service models
  • Wait lists
  • Professionals
  • Funding costs
  • General Comments

27
Where are we now?
  • Instrument Developed
  • Constructed list of target centres
  • Sent survey out December 2006
  • Over 150 responses to date

28
Choosing Our Target Centres
  • Services or supports for children with
    developmental delays
  • At least two types of services provided
  • Targeting the executive director whenever
    possible

29
Centres by Province
30
Where are we going?
  • Sponsorship
  • Sending out hard copies/conducting telephone
    interviews
  • Deadline for survey completion April 2007
  • Data analysis June 2007
  • Report August 2007

31
What do we want to know?Province Comparisons
  • Do significant differences exist across Canada in
    terms of the average number of services and
    professionals at the centre?
  • Do significant differences exist across Canada in
    terms of the average wait time to receive
    services?
  • Do significant differences exist across Canada in
    terms of personnel satisfaction with child
    outcomes and perceived parental satisfaction?
  • Do significant differences exist across Canada in
    terms of perceptions of the provincial/territorial
    governments ability to meet the needs of
    children and families with developmental delays?

32
What do we want to know?General Findings
PREDICTIONS
  • There will be a positive relationship between the
    combined wait time for assessment and service
    delivery and the length of time for which the
    child requires services.
  • There will be a negative relationship between the
    combined wait time for assessment and service
    delivery and the perception of parent
    satisfaction.
  • There will be a positive relationship between the
    number of services provided at the centre and
    satisfaction with child outcomes.

33
Outcome of the Inventory
  • Improved knowledge of EI service models
  • Improved knowledge of current EI services and
    identification of gaps and critical issues in EI
    services
  • Sensitize EI centres to best practices, success
    factors and alternative models
  • Motivate EI centres to reexamine practices in
    light of inventory of other models
  • Encourage EI centres to add new elements in their
    interventions

34
Longitudinal Study of Children with Developmental
Delays and Disabilities in EI
  • What have we accomplished thus far?

35
Project Goals
  • Development of Assessment Protocol (AP)
  • Longitudinal Panel Design (Yaldei)
  • Comparison of Research Sites over time

36
A. Assessment Protocol (AP)
  • Experts from around the world consulted
  • Medicine
  • Psychology
  • Psychiatry
  • Social work
  • Speech language-Communication
  • Occupational and Physiotherapy
  • Family and Human Development
  • Kinesiology
  • Play therapy

37
Development of AP
  • Extensive review of assessment methods in the
    current EI literature
  • 8 domains
  • Motor functioning
  • Speech-language and Communication
  • Cognitive
  • Family
  • Behaviour/Social-emotional
  • Medical/Developmental
  • Neurology
  • Adaptive functioning

38
8 Domains of Functioning
  • Motor functioning Motoric Functioning
    (perceptual, gross, fine) coordination
    visual-motor integration
  • Speech-language and Communication Focus on
    receptive and expressive language Phonology,
    morphology, syntax, semantics, pragmatics
  • Cognitive Development of perception, memory,
    language, concepts, thinking, problem solving,
    metacognition, and social cognition academic
    performance
  • Family Family ecology focus on family
    functioning centered on outcomes for wellbeing
    (parental stress, parental psychopathology,
    coping and adaptation, cognitive appraisal,
    impact of child behaviour on parenting,
    parent-child interaction, marital satisfaction,
    family support systems)

39
8 Domains of Functioning (cont.)
  • 5. Behaviour/Social-emotional Social,
    behavioural and emotional functioning
    (social-cognition, social skills development,
    behaviour problems, peer-related social
    competence, emotion regulation.
  • Medical/Developmental Standard developmental and
    medical tests conducted by pediatricians
    developmental milestones
  • Neurology Diagnosis and treatment of nervous
    system disorders, including diseases of the
    brain, spinal cord, nerves, and muscles.
  • 8. Adaptive Limitations in communication,
    self-care, home living, social/interpersonal
    skills, use of community resources,
    self-direction, functional academic skills, work,
    leisure, health and safety.

40
Development of AP
  • Potential tests were researched
  • Policy makers, experts, and key informants were
    consulted
  • Teleconferences held for each domain with
    world-renowned experts
  • Experts helped
  • Identify gold standard tools
  • Recommend other tools
  • Identify critical issues in assessment (time
    factor, validity, reliability)

41
To view the Assessment Protocol go to
  • http//www.earlyinterventioncanada.com/Assessment_
    Protocol.html

42
B. Longitudinal Panel Design
  • Comparison of YDC to other sites over time
  • Collect retrospective and current family and
    intervention data
  • Cohort (n 30) per site
  • YDC children and families followed over 2 yrs
  • Establish baseline for all children in YDC cohort
    using new AP
  • Evaluate YDC children every 6 mos. over 2 year
    period
  • Analysis of impact of YDC model compared to
    others
  • Design methodological advantages
  • Gain insight on developmental processes over time

43
C. Comparison of Research Sites
  • What do we want to know?
  • What is the relative efficacy of different EI
    service delivery models for children with DD and
    their families across time?
  • Which of our outcome variables have changed and
    to what degree?
  • Which variables are less affected by the
    particular type of EI model of service delivery?

44
Comparison of Research Sites
  • Multi-site, non-experimental, longitudinal
  • Repeated measures factor design
  • Currently set out to conduct 3 repeated measures
    every 6 mos.
  • Parents assessed on all measures
  • Children assessed only on new measures use prior
    scores if available
  • Anticipated sample size N 150 Canadian children
    and families
  • Comparative analysis of YDC to 4 comparison sites
  • Obtain same baseline data and end point data as
    YDC
  • Analyze data and assess significance of EI
    factors and effect on outcome for families
  • Disseminate results to EI centres

45
Comparative Sites
  • To date
  • Identified 5 EI Sites across QC and ON
  • 2 specialized day schools/treatment centre
  • 1 rehabilitative community agency
  • 2 early intervention centres
  • Working closely with sites to coordinate data
    collection with
  • Clinical coordinators/principals
  • Speech-language therapies
  • Occupational and physiotherapists
  • Psychologists
  • Social Workers
  • Special educators

46
Currently we are
  • Training research assistants on the AP Child
    measures
  • Intelligence, achievement, receptive and
    expressive language, neuropsychological tests,
    observations of peer competence
  • Training research site staff on measures of
    assessment
  • Useful tools for future assessments at their
    respective site
  • Compiling Parent measures
  • Parental stress, parent psychopathology,
    behaviour problems, social skills, and adaptive
    functioning of child, developmental history
    questionnaire
  • Compiling info on children and families
  • Age, gender, developmental diagnosis, how long in
    EI, what therapies they are have or are currently
    receiving, assessment history, what assessments
    children have been measured on
  • Gathering consent forms
  • Child assent and Parent consent
  • Field testing at YDC
  • Parent interviews

47
Implications
  • Children
  • Developmental and significant advances in all
    areas of functioning
  • Thorough evaluation of the child
  • Specific needs are being met
  • Reduces need for specialized services
  • Parents
  • Better information base/knowledge facilitate
    lobby efforts for change
  • Access better resources/services
  • Reduced stress
  • Increased wellbeing, coping mechanisms
  • Help foster parent-child relationship, better
    attitudes, parental competence

48
Specific research initiatives
  • There are a multitude of questions that can be
    addressed from this research endeavour
  • Several graduate students in EI research lab are
    pursing their own interests based on one of the 8
    domains of functioning
  • Questions represent specific interests, not
    limited to only these research questions
  • Example Early intervention and adaptive
    functioning What works best for whom?
  • Example National assessment of service delivery
    models
  • Example Parental stress and coping

49
Zachs Story
  • We have been incredibly fortunate with the early
    intervention program.
  • However, over the past two and a half years we
    have found it very hard to maintain consistency
    in our programs. 
  • Challenges have included
  • Initial diagnosis
  • Changing rules and procedures under their
    provincial governments funding program
  • Finding keeping good qualified staff

50
Parental Stress and Coping
  • 2 Research studies that emerged from larger EI
    project
  • Examining predictors of parental stress and
    psychopathology
  • Parental stress is a major health concern that
    warrants attention in the lives of parents who
    have a child with a DD
  • Stress and coping vs. Pathology perspective
  • Much variability in parental response to stress
  • What predicts stress and how?

51
Two Studies
  • STUDY 1
  • Identifying child, parent, and family predictors
    that affect perceived parental stress and coping
  • Child factors age, disability, behaviour, IQ
  • Parent factors age, gender, educational level,
    marital status
  • Family assets cognitive appraisals of the child
    coping mechanisms
  • What factors predict outcome?
  • How do mothers and fathers differ?
  • What is the role of coping in perceived parental
    isolation?
  • STUDY 2
  • Influence of childrens peer-related social
    competence and behaviour problems and perceived
    maternal/paternal stress
  • Does the type of disability mediate the
    relationship between child behaviour problems and
    stress?
  • How do childrens level of social-behavioural
    competence affect mothers and fathers
    perceptions of their childs adaptability and
    demandingness?

52
Small Group Activity
  • Based on our presentation and your personal
    experiences in the field, identify the common
    underlying issues, challenges and obstacles
    within Early Intervention,
  • What possible strategies and solutions would you
    recommend and envisage to respond to, or
    alleviate the issues identified in question 1?

53
  • Policy Issues in EI

54
Key Policy Issues
  • Jurisdictional Issues
  • Discrepancy in service provision across Canada
  • Each province allocates a different amount of
    funding and disparate services.
  • How do the courts and legislature conceive of the
    rights of children with disabilities?
  • What obligations are incumbent upon the federal
    and provincial governments?
  • How far does the obligation extend?
  • Policy Action Groups

55
Jurisdictional Issues
  • EI programs often fall under the Ministries of
    Education or Health which are under provincial
    jurisdiction
  • The freedom of each province to include or
    exclude a specific treatment in its insured non
    core services defines the notable differences
    among provincial programs for the treatment of
    children with DD
  • This means that there will discrepancy in service
    provision and funding across the country
  • This leads to unequal access to supports and
    services for children and families. Ex Alberta

56
Rights and Obligations
  • The premise of most legal actions in Canada
  • It is discriminatory not to provide
    scientifically validated effective treatment to
    certain groups of people.
  • Families also take the government to court
    arguing that the eligibility cut-off is
    discriminated on the basis of age (section 15 of
    the Charter)(rf. Wynberg V. Ontario).
  • Claiming of a violation of Section 7 (security of
    the Person) of the Charter because children were
    subjected to compulsory special education that
    was ineffective or harmful.

57
Current State of Affairs in Canada
  • Decision of the Supreme Court of Canada has
    absolved provinces from paying for intensive
    applied behaviour analysis therapy for children
    with autism novel, controversial,
    experimental, and not a medically necessary
    service.
  • Issue has underscored the glaring need for
    research in this area, the lack of clarity in
    public policy, and has stirred strong emotional
    reactions by family advocacy groups seeking
    specialized services for their children and
    policy makers concerns regarding types of
    services needed and who should pay for them.

58
Major Cases
  • British Columbia
  • The Auton case was the first case where a
    provincial appeal court upheld a lower court's
    decision that Charter rights require a provincial
    government to pay for a specific health
    treatment. (Auton Guardian ad Litem of.)
  • On appeal, the Supreme Court overturned the two
    lower court rulings. They ruled that the British
    Columbia government's conduct had not infringed
    the petitioners' rights under sections 15 and 7
    of the Canadian Charter of Rights and Freedoms
  • Controversy surrounding different models of
    instruction and treatment for children with
    autism
  • Jurisdictional question of which provincial
    department(s) is responsible for service delivery
    for children with special needs Education,
    Health
  • Issue of limited government resources to fund
    programs for children with special needs
  • Elected governments, rather than the courts, will
    be left to determine how public funds are
    allocated for health care services

59
Other Examples
  • Ontario
  • Since 2000, the Ontario government has paid for
    Applied Behaviour Analysis (ABA) for children
    under the age of six with autism.
  • 30 families with children with autism took the
    government to court, arguing that the cut-off was
    discriminatory on the basis of age (Section 15)

60
Ontario Jurisprudence
  • Wynberg V. Ontario 2005 CanLII 8749 (ON S.C.)
  • Each of these children is "exceptional" within
    the meaning of s. 8(3) of the Education Act ....
    Once that exceptionality has been identified,
    special education programs and services become
    available through publicly funded district school
    boards pursuant to s. 170.
  • HOWEVER

61
Ontario Jurisprudence
  • The province has not allocated the funding
    required to deliver programs. This leaves schools
    and school boards in the untenable position of
    addressing parental demands for services that are
    not adequately funded.
  • The Wynberg decision would make it more difficult
    for provincial governments to restrict funding to
    school boards and shift the financial burden on
    the boards for the provision of services to
    children with special needs

62
Other Examples
  • Québec
  • R.Q., CHAPITRE S-4.2
  • "Toute personne a le droit de recevoir des
    services de santé et des services sociaux
    adéquats sur les plans à la fois scientifique,
    humain et social, avec continuité et de façon
    personnalisée (article 5) toutefois
  • " Les droits aux services de santé et aux
    services sociaux et le droit de choisir le
    professionnel et létablissement prévus aux
    articles 5 et 6, sexercent en tenant compte des
    dispositions législatives et réglementaires
    relatives à lorganisation et au fonctionnement
    de létablissement ainsi que des ressources
    humaines, matérielles et financières dont il
    dispose. (Article 13)

63
Other Examples
  • Québec Charter
  • " Toute personne dont la vie ou lintégrité est
    en danger a le droit de recevoir les soins que
    requiert son état. Il incombe à tout
    établissement, lorsque demande lui en est faite,
    de voir à ce que soient fournis ces soins. "
    (article 7)
  • Informations " Tout usager des services de santé
    et des services sociaux a le droit dêtre informé
    sur son état de santé et de bien-être, de manière
    à connaître, dans la mesure du possible, les
    différentes options qui soffrent à lui ainsi que
    les risques et conséquences généralement associés
    à chacune de ces options avant de consentir à des
    soins le concernant." (article 8)
  • Consentement requis " Nul ne peut être soumis
    sans son consentement à des soins, quelle quen
    soit la nature, quil sagisse dexamens, de
    prélèvements, de traitement ou de tout autre
    intervention. " (article 9)
  • Consentement aux soins Le consentement aux
    soins ou lautorisation de les prodiguer est
    donné ou refusé par lusager ou, le cas échéant,
    son représentant ou le tribunal, dans les
    circonstances et de la manière prévues aux
    articles 19 du Code civil du Bas Canada. "
    (article 9)
  • Représentant "Les droits reconnus à toute
    personne dans la présente loi peuvent être exercé
    "

64
Québec Charter
  • Policy on Special Education (unveiled in January,
    2000)
  • 6 lines of action defined to guide intervention
    measures for students with LDs
  • importance of prevention, all those working with
    special populations must make the adaptation of
    educational services a priority, adapt
    educational services based on evaluation of
    students needs and abilities, with a view of
    integration into the regular classroom, school
    should create a true educational community
    starting with students and parents, but also
    including the community, devote particular
    attention to at-risk populations, particularly
    those with learning difficulties, evaluation in
    terms of knowledge, social development, service
    quality must report the results
  • Services Resources for Elementary Children with
    Learning Difficulties
  • In elementary school, generally integrated into
    typical classroom
  • One of the main services is remedial education
    (seem to work mainly outside of the classroom but
    this is beginning to change)
  • Grade repetition still frequently used as a means
    of getting the child to meet competency
    requirements (although research shows it is
    ineffective)
  • Schools use a broad array of measures to meet the
    needs of students with LDs
  • Workshops, support measures, individual teaching
    units, tutoring, remedial units
  • Innovative projects being piloted in several
    communities as well

65
Québec Reforms
  • 2003 Reform to the Health and Social Services Act
  • Conglomeration of regional services
  • Mandate to fund private sector programs and
    services not provided by the public sector.
  • Not yet implemented

66
Nova Scotia
  • Dassonville-Trudel vs. Halifax Regional School
    Board raises several issues
  • The case highlighted several key aspect of the
    funding and jurisdictional disputes associated
    with programming for children with autism
  • What is a reasonable balance between parental
    funding requests and limited funding resources,
    especially when the gap between the two is
    extreme?
  • This case exemplifies the serious procedural and
    jurisdictional questions which often arise in the
    provision of services for children with autism
  • Questions of discretion in adherence to
    guidelines and policies extend beyond funding
    disputes to other aspects of service delivery for
    children with DD including transition planning in
    the move from preschool to public school programs

67
Issues to Consider
  • Is EI a financial burden?
  • Which special services and programs fall within
    the domain of public education?
  • If public education is free, why are parents
    paying for these programs?
  • Dilemma of limited public funds to meet unlimited
    public demands for services

68
Issues to Solve
  • Transitions between pre-school and public school
    programs may present challenges for children with
    developmental delays and for their families
  • Type of programs
  • Age Limits
  • A proper definition of Reasonable Accommodation
  • Jurisdictional Responsibility
  • Coordination between the federal and the
    provincial level regarding actions for Children
    with DD

69
Implications and Future Directions
  • Role of the Federal Government?
  • Must legal framework of education in Canada be
    revisited?
  • Are national definitions and standards required
    to create a Canadian model of adequate education
    for children with special needs?

70
Policy Action Group
  • What are we doing to address some of the above
    issues?
  • Contacts throughout various sectors, provinces
    and ministries
  • Goal of presenting to the National Blueprint
    forService Provision for Families and Children
    with Developmental Delays
  • Alert key sectors about our research, evolution
    and website
  • Conference to facilitate dialogue
  • Current government priorities Bill C303
  • UN Convention on the Rights of the Child

71
Policy Advisory Group
  • Comprised of experts whose mandate will be to
    develop and implement specific strategies that
    include
  • identifying and prioritizing key stakeholders and
    decision makers in early intervention (EI)
    policies and practices
  • providing input on current perceived or actual
    deficiencies in policy, service, planning and
    practices and soliciting recommendations for
    lobbying and implementing change
  • developing a consensus on what changes are needed
    and recommending and implementing a process for
    effecting these changes in EI policies.

72
Policy Advisory Group
  • Experts Consulted to DateProfessor Angela
    Campbell, Associate-Professor, Faculty of Law
    McGill University, Montreal, QCMs. Trinela
    Cane, ADM, on behalf of Mary Anne Chambers,
    Minister of Children and Youth Services, Toronto,
    ONMs. Hollee Card, LArche Canada, Montreal,
    QCDr. Antonia Maioni, Director, McGill
    Institute for the Study of Canada, Montreal,
    QCHonourable Margaret McCain, First woman
    Lieutenant-Governor of New Brunswick, Sudbury,
    ONRepresentative on behalf of Principal Heather
    Munroe-Blum, McGill University, Montreal,
    QCHonourable Landon Pearson, Director of the
    Landon Pearson Resource Centre for the Study of
    Childhood and Childrens Rights at Carleton
    University, Ottawa, ONDr. Ralph Strother,
    Senior Program Officer, Max Bell Foundation,
    Calgary, ABDr. Wendy Thompson, Director of
    School of Social Work, McGill University,
    Montreal, QC

73
Research Advisory Group
  • Comprised of both scholars and practitioners who
    are providing invaluable feedback regarding our
    assessment protocol to be used in the
    longitudinal part of our study. They will
    continue to advise us on an ongoing basis
    concerning a myriad of clinical and
    methodological issues. They will be kept apprised
    of all findings and developments throughout the
    study.

74
Research Advisory Group
  • Experts Consulted to DateMr. Ben Baer, Director
    of Yaldei Developmental Centre, Montreal, QCDr.
    Deborah Dewey, Professor and research
    Neuropsychologist, Department of Pediatrics,
    University of Calgary, Calgary, ABMs. Katrine
    Doucet, Speech and Language Pathologist,
    Montreal, QCMs. Caroline Erdos, Speech and
    Language Pathologist, Montreal, QCDr. Emmett
    Francoeur, Pediatrician, Montreal Childrens
    Hospital, Montreal, QCDr. Eric Fombonne,
    Director of Psychiatry Department, Montreal
    Childrens Hospital, Montreal, QCDr. Shuvo
    Ghosh, Child Developmental Pediatrician, Montreal
    Childrens Hospital Montreal, QCDr. Erika
    Gisel, Professor, School of Physical and
    Occupational Therapy, McGill University,
    Montreal, QCDr. Coral Kemp, Senior Lecturer in
    Special Education, Australian Centre for
    Educational Studies, Macquarie University,
    Sydney, AustraliaDr. Lucy Lachs, Assistant
    Professor, School of Social Work, McGill
    University, Montreal, QCMs.Josee Laurendeau,
    Speech and Language Pathologist, Montreal,
    QCDr. Gabriel Leonard, Neuropsychologist,
    Montreal Neurological Institute, Montreal,
    QCDr. Michael Lewis, Developmental
    Psychologist, Distinguished Professor of
    Pediatrics and Psychiatry, Robert Wood Johnson
    Medical School, New Brunswick, NJDr. Annette
    Majnemer, Professor and Occupational Therapist,
    School of Physical and Occupational Therapy,
    McGill University, Montreal, QCDr. Laraine
    Masters-Glidden, Developmental Psychologist,
    St-Marys College of Maryland, St. Marys City,
    MDMs. Barbara Nadler, Occupational Therapist,
    Yaldei Developmental Centre, Montreal, QCDr.
    Rhea Paul, Speech and Language Pathologist, New
    Haven, CTMs. Kimberley Reynolds, Developmental
    Progress Clinic Co-ordinator, Montreal Childrens
    Hospital, Montreal, QCMs. Nancy Ship, Speech
    and Language Pathologist, Montreal, QCDr. Wendy
    Thompson, Director of School of Social Work,
    McGill University, Montreal, QCDr. David
    Tupper, Neuropsychologist, University of
    Minnesota and Hennepin County Medical centre in
    Minneapolis, Minneappolis, MNDr. Caroline
    Zanni, School Psychologist, Summit School,
    Montreal, QC

75
Small Group Activity
  • In your opinion what would be the basic services
    that should be guaranteed to children diagnosed
    with developmental delays?
  • Given the federal and the provincial budget
    constraints, what recommendations would you make
    for fiscal policies directed at families of
    children with developmental delays?

76
Closing Remarks
  • Thank you!
  • Canadian Early Intervention Research Team
  • Dr. Ingrid Sladeczek, PhD (primary investigator)
  • Phone (514) 398-3450
  • Email ingrid.sladeczek_at_mcgill.ca
  • Web www.earlyinterventioncanada.com
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