researcher / policy-maker interactions and early intervention for asd in nova scotia
DESCRIPTION
Researcher / Policy-Maker Interactions and Early Intervention for ASD in Nova Scotia. Isabel M. Smith, PhD Dalhousie University & IWK Health Centre NeuroDevNet - Toronto, September 2012. Acknowledgements. Susan Bryson PhD Craig Chair in Autism Research - PowerPoint PPT PresentationTRANSCRIPT
Researcher / Policy-Maker Interactions and
Early Intervention for ASD in Nova Scotia
Isabel M. Smith, PhDDalhousie University &
IWK Health Centre
NeuroDevNet - Toronto, September 2012
Acknowledgements
• Susan Bryson PhDCraig Chair in Autism ResearchDalhousie University & IWK Health Centre
• Patricia Murray MSc, MHSANS Dept of Health & Wellness
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Timeline2004, Dec: NS Minister of Health announces $4m
for EI program for preschoolers with ASD• 2004, Jan – May: Bryson accepts role; Program
designed (Bryson / Koegel); Implementation plan developed
• 2005, Jun: Hiring of EIBI team members (3 locations)
• 2005, Jul – Oct: First cohort of families enrolled; Training of families and service providers by Koegel Autism Center, UCSB
• 2006, Summer-Fall: Grant proposal developed 3
Timeline, cont’d
• 2006, Oct: Training of PRT trainers by UCSB• 2006, Fall: Interim program evaluation report to
Dept. of Health• 2006, Fall: Begin province-wide roll-out of
program (by provincial trainers, with Bryson as Clinical Leader; treatment fidelity monitored) – but approx. 50% coverage (consultation with bio-ethicist; random selection)
• 2007, April: CIHR funding – expanded study of 12-month outcomes
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2007, Summer: Published description of model
Timeline, cont’d
• 2007, Jul: Program evaluation report to Dept of Health
• 2008, April: NSHRF funding (follow-up evaluation)
• 2007 – 2010: Public pressure builds regarding lack of universal access to EIBI program
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2010, Nov: Published report on children’s 12-month outcomes
• 2010- 2012: Continued researcher / policy-maker collaboration (development of grant proposal); partnership between Nova Scotia and New Brunswick
2011, April: NS Premier announces funding for expansion of EIBI program
• 2012, Spring: Obtained CIHR-PHSI grantSmith, Murray, Bryson et al.: Intervention models for preschoolers with autistic spectrum disorder (ASD): A population-based comparative effectiveness study
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Critical Policy-Maker Actions / Roles
• Minister consulted ASD researcher / expert• Risk-tolerant decision-maker -- decision
informed by evidence• Commitment to independent evaluation• Flexibility re: researcher incentives– Program evaluation funded to allow independent
data collection– Researcher ownership of intellectual property
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Critical Researcher Actions / Roles
• Willingness to donate time and expertise• Expert; credibility with all stakeholders• Program design & implementation: – Outside-the-box thinking– Lessons learned from other jurisdictions (in Canada
and elsewhere)• Commitment to partnerships among service
providers• Development of relationships & buy-in across
systems and across province10
This tale is on-going . . .
• Policies regarding EI for children with ASD have changed as a result of these productive partnerships (researchers / policy-makers / clinicians / families)
• Partners, across service systems and across Nova Scotia, have created a strong and effective program
• Families are very positive about the program but want -- and deserve -- more to ensure children’s continued progress and family well-being
• Opportunity to build on strengths and to use evidence to guide further development of services
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