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.

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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)

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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.

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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).

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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).

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National Blueprint for Canadian Families of
Children with Developmental Delays

• What goals have we set out to accomplish in this
  EI project?

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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.

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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

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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.

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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

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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.

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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.

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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.

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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.

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Early Intervention Inventory

• A survey of
• early intervention services
• across Canada

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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)

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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

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Where are we now?

• Instrument Developed
• Constructed list of target centres
• Sent survey out December 2006
• Over 150 responses to date

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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

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Centres by Province
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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

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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?

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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.

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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)

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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.

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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)

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To view the Assessment Protocol go to

• http//www.earlyinterventioncanada.com/Assessment_
  Protocol.html

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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

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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

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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?

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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?

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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?

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• Policy Issues in EI

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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

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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

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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 [phone]
• Email ingrid.sladeczek_at_mcgill.ca
• Web www.earlyinterventioncanada.com