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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Thanks for your attention!

isabel.smith@iwk.nshealth.ca