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Researcher / Policy-Maker Interactions and Early Intervention for ASD in Nova Scotia

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

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Researcher / Policy-Maker Interactions and Early Intervention for ASD in Nova Scotia

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  1. 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

  2. Acknowledgements • Susan Bryson PhD Craig Chair in Autism Research Dalhousie University & IWK Health Centre • Patricia Murray MSc, MHSA NS Dept of Health & Wellness

  3. Timeline • 2004, 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

  4. 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

  5. 2007, Summer: Published description of model

  6. 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

  7. 2010, Nov: Published report on children’s 12-month outcomes

  8. 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 grant Smith, Murray, Bryson et al.: Intervention models for preschoolers with autistic spectrum disorder (ASD): A population-based comparative effectiveness study

  9. 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

  10. 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 province

  11. 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

  12. Thanks for your attention! isabel.smith@iwk.nshealth.ca

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