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Project Goals

The two primary goals of this project fall directly within the mandate of the Max Bell Foundation in that we are presenting an innovative and dynamic framework within which to:

Determine the efficacy of Early Childhood Intervention (EI) programs that impact the health, wellness, and environment of families with children who have developmental delays;
Engage practitioners and policy makers in early childhood development to reassess and facilitate the change of current policies and practices in this area where necessary.

The first major stage of the research involves the development of a sound and empirically based assessment protocol and an inventory for the Early Intervention Services Model to help guide screening, diagnosis, intervention, and evaluation decisions. To this end, experts from medicine, psychology, social work, therapeutic schools (e.g., speech, occupational physiotherapy) and other relevant domains from around the world will be consulted to derive at a sound protocol. The protocol will be developed and tested at the Yaldei Developmental Centre (YDC) and subsequently used to evaluate the services provided by YDC and compared to the services and intervention outcomes of other EI centres.

The second major stage of the research involves a longitudinal panel design where all children and families at YDC and other comparison sites in Quebec and Ontario are followed over the three years duration of the project. Such a design has a distinct methodological advantage of providing more detailed information describing developmental processes over time.

The third major stage of the research involves the comparison of YDC to other selected sites over time. Therefore, this will also involve a longitudinal panel design. The contrast between YDC and the comparison sites, as well as retrospective data, would allow for a comparative analysis of the relative efficacy of different models of service delivery for this population. We would be able to ascertain which of the dependent variables have changed and to what degree as well as those variables that are less affected by the particular type of EI community service delivery model.

Overlaying all of these major stages is the development and implementation of a public policy action plan in Early Intervention for families and children with developmental delays. The public policy action group will be comprised of key stakeholders and decision makers in early intervention policy and practice. Group members will identify key policy change agents and provide input on current areas of deficiency with recommendations for change implementation. Information will be disseminated on an ongoing and systematic basis and group members will come to a consensus regarding what changes are necessary and how to implement said changes.




Assessment Protocol

An empirically-based assessment protocol, with input from world renowned experts is being developed to guide screening, diagnosis, intervention and evaluation decisions for health care professionals working with children from 0 through 9 years of age with developmental delays and their families.

To begin this process, an extensive review of assessment methods in the current early intervention literature was carried out. Selected articles can be obtained from the Early Intervention Resources page of our website. Nine domains for assessment were decided upon (see Assessment Protocol) and potential tests in each area were researched. After the compilation of a tentative assessment protocol based upon our research findings, policy makers, experts, and key informants in the area were consulted to assist with the decision-making process. Teleconferences were held with experts in each of our domains to provide recommendations regarding the assessment tools and to identify critical issues in assessment.




Longitudinal Survey

A longitudinal survey which will follow children and families for a 3 year period will enable us not only to ascertain the overall impact of early intervention, but also to determine which intervention components are best matched to particular types of developmental profiles and family characteristics. Children will be assessed every six months for three years using the aforementioned assessment protocol. Retrospective data will also be collected and analyzed.

Schools, government and private developmental centres have been recruited to take part in our longitudinal study. We are currently finishing the assessment protocol which will be used when we enter the field this upcoming fall. We plan to begin assessments in October in order to provide teachers with a period of time to get to know the students prior to filling out any teacher measures. We are also finalizing our ethics application which is required prior to commencing the study.




Early Intervention Inventory

An early intervention inventory is being constructed to analyze early intervention models/centers and their grouping of services in various private, not for profit, public and government EI service providers in Canada. Four provinces (BC, AB, ON, QC) are being targeted initially with the remaining provinces and territories to be targeted subsequently. The most common characteristics, best practices and critical success factors in early intervention will be identified with this inventory.

The early intervention inventory has been constructed (see E.I. Inventory) and early intervention centers in British Columbia, Alberta, Ontario and Quebec are currently being identified by the team. This process is almost complete and the inventory will be sent to the executive directors of the identified centres in the near future. The inventory will also be made available on the website.




Policy Goals

This project combines active research and data collection on current EI practices and treatment modalities with a simultaneous transmission of this information to policy and decision makers. The outputs derived from the assessment of current screening and diagnostic protocols and intervention models is rendered dynamic in the sense that it is aimed at providing direct inputs that will be used in a very short span of time to modify current clinical practices and create a paradigm shift in the existing conceptual framework and mindsets regarding EI in children with developmental delays.

This differs markedly from conventional static research in that the goals, processes and interpretation of results are aimed at and will be used principally to drive a policy change agenda and to fast-track the application of results and observations from the field to changes in practice. The main idea is to develop a continuum within the objectives of this project such that there will be an integration and seamless transitioning from research objectives to public policy and action oriented objectives.

A Policy Action Group has been formed with key informants and stakeholders in the area. We are currently identifying key stakeholders and decision makers and identifying their role in the EI continuum of services. We are also identifying key policy change agents, soliciting their input on current perceived or actual deficiencies in policy, service, planning and practices and soliciting recommendations for lobbying and change implementation. We have also been engaging stakeholders in discussion forums in their respective fields on creating paradigm shifts in early intervention.

We plan to review the contributions in each stage of the research plan in order to provide input and strategic direction as it pertains to policy development and change. We will also convene key representatives to come to a consensus regarding what changes are needed and to implement a process for effecting these changes in EI policy. Finally, we will produce and present a report to the Minister of Health in each province that is reflective of the support of stakeholders involved in this process.




Service and Legal Framework

Our legal framework consists of compiling and comparing legislations and jurisprudences across Canada. Our work encompasses legal differences between Canadian provinces, as well as: what constitutes a “reasonable accommodation for children with Developmental delays, what are the legal challenges for the future, and what special services and programs fall within the domain of public education and many others.

The premise of most of the legal actions in Canada is that it is discriminatory not to provide scientifically validated effective treatment to certain groups of people (people with Autism Spectrum Disorders, Children with Developmental Delays under the age of nine and of any age). Treatment is costly, and the various intervention programs are controversial and expensive, which limits the number of families with enough personal financial resources to afford treatment. The outcomes of legal actions and appeals to date have been overwhelmingly in support of the assertion that people with developmental delays should be afforded the opportunity to receive scientifically validated effective treatment in a non-discriminatory manner.

Indeed, the ongoing debate addresses what constitutes appropriate programming for children with developmental delays. The Jurisdictional Responsibility is certainly one of the most frustrating areas for parents. Various cases in Canada highlight the problem of jurisdictional disputes. The various departments of government seldom approve to subsidize programming until legally required to do so, and it differs from one Province to the next. Even after courts in several jurisdictions have told governments to develop protocols for coordination of services to children with special needs, these protocols are still not in place.

Also, the age limits placed on intervention programs, either through the result of research or through fiscal constraints, present many roadblocks for continuity in programming for children with autism. Since these children often struggle with change, the impact of abrupt cessation of service may be especially devastating to their development.

The proposed legal document will identify which types of families with children who have developmental delays are best matched to a particular intervention approach to optimize positive outcomes for these children. Further, this document will provide policy planners and decision makers with a better understanding of the critical legal issues that need to be addressed in EI and a rationale and direction for policy change as well as developing a broad based consensus from professionals working in different stages of the EI service delivery continuum. Being able to provide valid and reliable data will impact the children and families directly, as well as providing provincial and national policy makers a sound basis on which to implement changes in current legislations.


 

 
 
 
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