Creating a Paradigm ShiftCreating a Paradigm ShiftCreating a Paradigm ShiftCreating 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)

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)

Need to Know

Current policies in Canada with respect to families and children with developmental delays

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

Hosted by:

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

Daniel Amar, MBA, Co-investigatorDirector, Yaldei Developmental Center

Stephane Drai, MA, Faculty of Law

Jennifer Saracino, MA Candidate School/Applied Child Psychology

Anastasia Karagiannakis, PhD Candidate Special Population of Learners

Nancy Miodrag, PhD Candidate Special Population of Learners

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)

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.

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.

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)

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)

Some 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.

Headlines

What is Early Intervention?

We conceptualize EI as including both and components that involve a systematically planned method of taking actions based on the child’s needs during the early pivotal years of life.

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

– 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 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 Canadian Families

of Children with Developmental

Delays

National Blueprint for Canadian Families

of Children with Developmental

Delays

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.

Goal 1 (cont.)

Domains of functioning that are being assessed include:– Speech-language and communication– Cognitive functioning– Family– Behaviour-socio-emotional– Medical/developmental– Neurology– Adaptive functioning

Domains of functioning that are being assessed include:– Speech-language and communication– Cognitive functioning– Family– Behaviour-socio-emotional– Medical/developmental– Neurology– Adaptive functioning

The evaluation of the impact of diverse private, not for profit, public and government EI centers in Quebec and Ontario wherein children and families will be followed for a 3 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 2

Collect retrospective family and intervention data and establish baseline measures for all children using the new assessment protocol

Evaluate children every 6 months over 3 years using assessment protocol

Presently, 6 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 centers

Goal 2 (cont.)

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 2 (cont.)

The development of an inventory and analysis of EI models/centers 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 3

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.

Goal 4

Closing Introductory Remarks

Our objectives today are twofold:(a) to present up-to-date information on services, structures, legislation and policy issues related to EI and developmental delays; and

(b) to engage key stakeholders, including practitioners and policy makers, in a dialogue on EI services and policies to begin our efforts into creating a National Blueprint for Canadian Families of Children with Developmental Delays.