ACT EARLY autism project: Translating Knowledge into Action Robin Gaines, Carol Theoret-Douglas, and Caroline Desrochers CN-CYR National Symposium

Transcription

1 ACT EARLY autism project: Translating Knowledge into Action Robin Gaines, Carol Theoret-Douglas, and Caroline Desrochers CN-CYR National Symposium October 2012

2 Parents Know Something Is Wrong Parents identify delays/differences in their child s development during the first three years of life Doctors may take a wait and see approach when parent expresses concerns System navigation is complicated Some children with early communication disorders will be diagnosed with an Autism Spectrum Disorder (ASD)

3 The Health Care System Does Not Adequately Provide The gap between the onset of parental concerns and publicly funded intervention is unacceptably long In the Ottawa area (Prior to Project): Speech/Language Pathology Screening Clinics referred children to ONLY one SLP service for assessment After assessment, families with children at-risk for ASD were transferred to ANOTHER SLP service (OCTC) System based wait times: 9-12 months for a developmental assessment after ASD diagnosis: >1 year for OT/SLP services >2 years for IBI services

4 Current Research Findings are Not Implemented in Practice Reliable diagnosis possible, months of age (Lord, 2012) Symptoms of ASD reversed and/or decreased with Early Intervention (Rogers, 2011)

5 Act Early Project: Implemented New Tools and Ways of Practice Partnerships with international researchers Screening (Dr. Wetherby- Florida State University) Paper screening tool (Early Screening of Autism and Communication Disorders) Observational Screening Tools (Communicative Symbolic and Behavioral Scales) Intervention method (Dr. Rogers- M.I.N.D. Institute; UC-Davis) Early Start Denver Model Parent Coaching Intervention

6 Act Early Project Designed To: Work with community partners to increase front line providers awareness of at-risk signs of ASD for children under 2 years of age Implement a cost effective and resource efficient means to screen young children with at-risk signs Deliver a 12 week (1 hour per week) parent coaching intervention based on the Early Start Denver Model (ESDM).

7 Act Early Autism Project Community Awareness Campaign Our Community Awareness Initiative involved: The Act Early poster distributed to: Day Cares Nursery Schools Physicians Offices Early Years Centres Community Centres Hospitals Principal Investigators interviewed on local television to describe study and early signs of ASD Articles in Ottawa Citizen and four community newspapers

8 Paper Screening Results Total Inquiries: 47 Telephone inquiries were received within 3 months time 32 ESACs (68 % of the total number of inquiries) were completed by parents

9 Observational Screening Results Observational Screening: Of 32 ESACs mailed out, 29 (91%) met clinical cutoff indicating the need for further evaluation and completed the observational screening Age range: months (range = 15 months) Mean age = months (SD = 4.42).

10 12 week Parent Coaching Intervention 15 Children/families participated in the intervention (all that research funding permitted) 1 hour per week of intervention in-home, focusing on strategies to promote social-communication skills through relationship building (Early Start Denver Model) Pre- Post Intervention measures were collected

11 Parent Coaching Intervention Results Significant gains in the children s communication Significant improvements the children s adaptive behaviour Individual variability in amount of improvement

12 After Act Early Project: System-Wide Changes to Community Screening Pathway Screening tool developed to help SLPs identify children at-risk for ASD TWO pathways of referral created: Developmental assessment (query ASD) Speech/language assessment (only) All doctors of children referred for developmental assessment informed of screening results Simpler process and faster access for children with at-risk signs of ASD

13 Outcomes Community education was enhanced Cost effective, faster screening process was piloted Parent Coaching Intervention provided: positive outcomes obtained System-wide triage for children with at-risk signs of ASD was streamlined, so that children/families now have direct access to the appropriate service Physicians are continually being educated to better recognize children with signs of ASD and know about services provided in the Ottawa system

14 Knowledge Translation and this Project Created a more informed community serving at-risk ASD children and families better Research project demonstrated more efficient screening practices and first intervention services using cost-effective means Put cutting edge research findings into practice Mobilized improved system-wide referral process