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 Student’s 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 another…a 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) “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)

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 child’s 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 basedprotocol 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 inventoryand 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 government’s 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. Zach’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

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?