Creating a Paradigm Shift in Early Intervention:

Education Graduate Student’s Society Conference

Panel PresentationMarch 10, 2007

Goals and Progress of the Canadian Early Intervention

Project

Creating a Creating a Paradigm ShiftParadigm 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 another…a metamorphosis or transformation driven by

agents of change” (Kuhn, 1962)

PurposePurpose

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)

Need to know: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

PanelPanel

Ingrid E. Sladeczek, PhD, Primary InvestigatorAssociate 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 StudentSchool/Applied Child Psychology

Definition of Definition of Developmental DelayDevelopmental 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)

Current Obstacles Impinging Current Obstacles Impinging Upon Policy, Practice Upon Policy, Practice

& Service Delivery& 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.

Other ChallengesOther 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.

Some HeadlinesSome 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)

“MRI’s 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)

Some HeadlinesSome 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)

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.

HeadlinesHeadlines

What is What is Early Intervention?Early Intervention?

We conceptualize Early Intervention (EI) as a systematically planned method of

taking actions based on the child’s needs during the early pivotal years of life.

What do we need What do we need for effective EI?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).

Child OutcomesChild 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).

National Blueprint for National Blueprint for Canadian Families of Canadian Families of

Children with Children with Developmental DelaysDevelopmental Delays

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

Goal 1Goal 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.

Goal 1 Goal 1 (continued)(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

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.

Goal 2Goal 2

Goal 2 Goal 2 (continued)(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

Goal 2 Goal 2 (continued)(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.

Goal 3Goal 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.

Goal 4Goal 4A 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.

Closing Introductory RemarksClosing 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.

Early InterventionIntervention Inventory

A survey of

early intervention services

across Canada

Purpose of the National Purpose of the National InventoryInventory

• 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)

Our Survey InstrumentOur 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

Where are we now?Where are we now?

• Instrument Developed

• Constructed list of target centres

• Sent survey out December 2006

• Over 150 responses to date

Choosing Our Target CentresChoosing Our Target Centres

• Services or supports for children with developmental delays

• At least two types of services provided

• Targeting the executive director whenever possible

Centres by ProvinceCentres by ProvinceProvince/Territory Number of Centres to Date

British Columbia 142

Alberta 128

Saskatchewan 68

Manitoba 41

Ontario 220

Quebec 54

Nova Scotia 82

Newfoundland & Labrador 56

New Brunswick 54

Prince Edward Island 22

Northwest Territories 31

Yukon 16

Nunavut 9

TOTAL 932

Where are we going?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

What do we want to know?What do we want to know?Province ComparisonsProvince 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 government’s ability to meet the needs of children and families with developmental delays?

What do we want to know?What do we want to know?General Findings: PREDICTIONSGeneral 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.

Outcome of the InventoryOutcome 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

Longitudinal Study of Children Longitudinal Study of Children with Developmental Delays and with Developmental Delays and

Disabilities in EIDisabilities in EI

What have we accomplished thus far?

Project GoalsProject Goals

A. Development of Assessment Protocol (AP)

B. Longitudinal Panel Design (Yaldei)

C. Comparison of Research Sites over time

A. Assessment Protocol (AP)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

Development of APDevelopment 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

8 Domains of Functioning8 Domains of Functioning1. Motor functioning: Motoric Functioning (perceptual, gross, fine);

coordination; visual-motor integration

2. Speech-language and Communication: Focus on receptive and expressive language; Phonology, morphology, syntax, semantics, pragmatics

3. Cognitive: Development of perception, memory, language, concepts, thinking, problem solving, metacognition, and social cognition; academic performance

4. 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)

8 Domains of Functioning (cont.)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.

6. Medical/Developmental: Standard developmental and medical tests conducted by pediatricians; developmental milestones

7. 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.

Development of APDevelopment 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)

To view the Assessment Protocol go to:

http://www.earlyinterventioncanada.com/Assessment_Protocol.html

B. Longitudinal Panel DesignB. 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

C. Comparison of Research SitesC. Comparison of Research Sites

What do we want to know?

1. What is the relative efficacy of different EI service delivery models for children with DD and their families across time?

2. Which of our outcome variables have changed and to what degree?

3. Which variables are less affected by the particular type of EI model of service delivery?

Comparison of Research SitesComparison 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

Comparative SitesComparative SitesTo 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

Currently we are…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

ImplicationsImplications• 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

Specific research initiativesSpecific 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

Zach’s StoryZach’s 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 government’s funding program– Finding keeping good qualified staff

Parental Stress and CopingParental 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?

Two StudiesTwo StudiesSTUDY 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 children’s 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 children’s level of social-behavioural competence affect

mother’s and father’s perceptions of their child’s adaptability and demandingness?

Small Group ActivitySmall Group Activity

1. Based on our presentation and your personal experiences in the field, identify the common underlying issues, challenges and obstacles within Early Intervention,

2. What possible strategies and solutions would you recommend and envisage to respond to, or alleviate the issues identified in question 1?

Policy Issues in EIPolicy Issues in EI

Key Policy IssuesKey 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

Jurisdictional IssuesJurisdictional 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

Rights and ObligationsRights and ObligationsThe 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.

Current State of Affairs in CanadaCurrent 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.

Major CasesMajor CasesBritish 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

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

Other ExamplesOther ExamplesOntario:

•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)

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…

Ontario JurisprudenceOntario Jurisprudence

Ontario JurisprudenceOntario 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

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 l’établissement prévus aux articles 5 et 6, s’exercent en tenant compte des dispositions législatives et réglementaires relatives à l’organisation et au fonctionnement de l’établissement ainsi que des ressources humaines, matérielles et financières dont il dispose.” (Article 13)

Other ExamplesOther Examples

Québec Charter:• " Toute personne dont la vie ou l’intégrité 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 d’être informé sur son état de santé et de bien-être, de manière à connaître, dans la mesure du possible, les différentes options qui s’offrent 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, qu’elle qu’en soit la nature, qu’il s’agisse d’examens, de prélèvements, de traitement ou de tout autre intervention. " (article 9)

• Consentement aux soins: “Le consentement aux soins ou l’autorisation de les prodiguer est donné ou refusé par l’usager 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 "

Other ExamplesOther Examples

QuQuéébec Charterbec CharterPolicy 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

QuQuéébec: Reformsbec: 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

Nova ScotiaNova 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

Issues to ConsiderIssues 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

Issues to SolveIssues 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

Implications and Future Implications and Future DirectionsDirections

• 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?

Policy Action GroupPolicy 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

Policy Advisory GroupPolicy 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.

Policy Advisory GroupPolicy Advisory GroupExperts Consulted to Date

Professor Angela Campbell, Associate-Professor, Faculty of Law McGill University, Montreal, QC

Ms. Trinela Cane, ADM, on behalf of Mary Anne Chambers, Minister of Children and Youth Services, Toronto, ON

Ms. Hollee Card, L’Arche Canada, Montreal, QC

Dr. Antonia Maioni, Director, McGill Institute for the Study of Canada, Montreal, QC

Honourable Margaret McCain, First woman Lieutenant-Governor of New Brunswick, Sudbury, ON

Representative on behalf of Principal Heather Munroe-Blum, McGill University, Montreal, QC

Honourable Landon Pearson, Director of the Landon Pearson Resource Centre for the Study of Childhood and Children’s Rights at Carleton University, Ottawa, ON

Dr. Ralph Strother, Senior Program Officer, Max Bell Foundation, Calgary, AB

Dr. Wendy Thompson, Director of School of Social Work, McGill University, Montreal, QC

Research Advisory GroupResearch 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.

Research Advisory GroupResearch Advisory GroupExperts Consulted to Date

Mr. Ben Baer, Director of Yaldei Developmental Centre, Montreal, QC

Dr. Deborah Dewey, Professor and research Neuropsychologist, Department of Pediatrics, University of Calgary, Calgary, AB

Ms. Katrine Doucet, Speech and Language Pathologist, Montreal, QC

Ms. Caroline Erdos, Speech and Language Pathologist, Montreal, QC

Dr. Emmett Francoeur, Pediatrician, Montreal Children’s Hospital, Montreal, QC

Dr. Eric Fombonne, Director of Psychiatry Department, Montreal Children’s Hospital, Montreal, QC

Dr. Shuvo Ghosh, Child Developmental Pediatrician, Montreal Children’s Hospital Montreal, QC

Dr. Erika Gisel, Professor, School of Physical and Occupational Therapy, McGill University, Montreal, QC

Dr. Coral Kemp, Senior Lecturer in Special Education, Australian Centre for Educational Studies, Macquarie University, Sydney, Australia

Dr. Lucy Lachs, Assistant Professor, School of Social Work, McGill University, Montreal, QC

Ms.Josee Laurendeau, Speech and Language Pathologist, Montreal, QC

Dr. Gabriel Leonard, Neuropsychologist, Montreal Neurological Institute, Montreal, QC

Dr. Michael Lewis, Developmental Psychologist, Distinguished Professor of Pediatrics and Psychiatry, Robert Wood Johnson Medical School, New Brunswick, NJ

Dr. Annette Majnemer, Professor and Occupational Therapist, School of Physical and Occupational Therapy, McGill University, Montreal, QC

Dr. Laraine Masters-Glidden, Developmental Psychologist, St-Mary’s College of Maryland, St. Mary’s City, MD

Ms. Barbara Nadler, Occupational Therapist, Yaldei Developmental Centre, Montreal, QC

Dr. Rhea Paul, Speech and Language Pathologist, New Haven, CT

Ms. Kimberley Reynolds, Developmental Progress Clinic Co-ordinator, Montreal Children’s Hospital, Montreal, QC

Ms. Nancy Ship, Speech and Language Pathologist, Montreal, QC

Dr. Wendy Thompson, Director of School of Social Work, McGill University, Montreal, QC

Dr. David Tupper, Neuropsychologist, University of Minnesota and Hennepin County Medical centre in Minneapolis, Minneappolis, MN

Dr. Caroline Zanni, School Psychologist, Summit School, Montreal, QC

Small Group ActivitySmall Group Activity

1. In your opinion what would be the basic services that should be guaranteed to children diagnosed with developmental delays?

2. Given the federal and the provincial budget constraints, what recommendations would you make for fiscal policies directed at families of children with developmental delays?

Closing RemarksClosing Remarks

Thank you!

Canadian Early Intervention Research Team

Dr. Ingrid Sladeczek, PhD (primary investigator)

Phone: (514) 398-3450

Email: ingrid.sladeczek@mcgill.ca

Web: www.earlyinterventioncanada.comwww.earlyinterventioncanada.com