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 Dalhousie University & IWK Health Centre Patricia Murray MSc, MHSA NS Dept of Health & Wellness 2

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 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 4

5 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 6

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

: 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 8

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 9

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 10

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 11

12 Thanks for your attention!