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Improving Identification of Babies with Special Needs: Beppie J. Shapiro, Ph.D. and Taletha M. Derrington, M.A. Center on Disability Studies, University of Hawai`i Early Intervention Section, Hawai`i Department of Health Working both sides of the public/private divide
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ORGANIZER Context Needs Assessment Strategies for Effective and Efficient Keiki (Child) Find Evaluation of Strategies
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Context Mandated services for infants and toddlers under IDEA (E.I.) Required Child Find function Community programs No history of evaluation
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Definitions Child find – efforts to ensure that babies with special needs are identified and referred to early intervention. Early Intervention (E.I.) – system of services for babies under age 3 with special needs.
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SERVED 2000 Child Count,% of live births Part C age 0-3 Mean 1.99% Range.96% (GA) to 7.7% (HI) Median 1.87% Part B age 3-5 Mean 5.04% Range 1.87% (DC) to 10.18% (KY) Median 5.14%
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Child Find: A Conceptual Framework Noticers Parents Doctors Child care Nurses Home visitorsIdentification Noticer’s Knowledge & Skills Eligibility How to tell if eligibleReferral Noticer’s Knowledge & Beliefs How to refer Benefits Past experienceReferralProcess Efficient Effective Friendly
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Evaluation of Child Find Are all eligible children identified and referred to E.I.? How much do professionals who are in a position to identify & refer know about E.I.?
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Evaluation of Child Find Comparing E.I. and Special Education Rosters: Over 25% of children with significant special needs were “missed” from 1991-1994. About 81% of these “missed” children could have been identified and referred by their Primary Care Physician (PCP) but were not. Stakeholders selected PCPs as the professional group to target.
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Evaluation of Child Find Statewide survey of PCPs, PHNs, Healthy Start Family Support Workers, Hospital Nurses, Hospital Social Workers, and Child Care and Education Providers. Focus Groups Many professionals do not know about E.I.; others have negative attitudes and/or beliefs about how it works.
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SURVEY QUESTION: Where would PCPs refer a child about whom they had developmental concerns?
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SURVEY QUESTION: E.I. in Hawai`i is Provided At No Cost To Families
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SURVEY QUESTION: Eligibility
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Barriers to PCP Referral “Wait & see” attitudes Lack of familiarity with E.I. in Hawai`i Feeling that E.I. programs do not give feedback on referrals
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Stakeholder Responses Proactive “need to fix” Energized Increased size of stakeholder group Found new resources
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Strategies for Effective and Efficient Keiki (Child) Find - SEEK Evaluation/needs assessment (statewide) Logic model & research design Evaluation/needs assessment (specific communities) Strategizing/implementation
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Logic Model
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Evaluation Measures: Pre vs. Post
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Selecting Communities Stakeholders Suggest criteria Prioritize criteria Collect data Rate communities Criteria Same services menu Same # of kids < age 5 Same number of PCPs Can be isolated
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Measurement Mailed surveys Number of referrals by individual PCPs
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Survey Dissemination Request 1 – Mail or Fed Ex Request 2 - Call office staff & fax another copy Request 3 - Call physician & ask him/her to help us. Additional requests - Get help from another physician or E.I. staff
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Survey Return Rate Survey Intervention Community Comparison Community Post- Comparison Community TOTAL Pre-Intervention84%88%N/A86% Post-Intervention75%78%77%
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Surveys & Referrals Are Related R = 0.645 p < 0.01
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Barriers to Identification and Referral by Physicians Attitudes, beliefs Knowledge Practice E.I. system Barriers to outreach
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Survey Data Shows Barriers
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Selecting A Strategy Analyze barriers Search literature Consult experts Conduct local focus groups & interviews Match promising strategies with barriers
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Promising General Strategies E.I. System Change E.I. program practices Attitudes/Beliefs Voices of patients, other PCPs RESEARCH Knowledge Practice Print, video, face to face
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Strategies Selected Group Presentations Continuing Medical Education Credit Local PCPs predicted success if schedule and perks conformed to PCP preferences/expectations Could incorporate methods to address knowledge, attitudes, and skills Mailed Post Cards Respects PCP time & attention constraints Inexpensive way to reach PCPs Could incorporate methods to address knowledge and attitudes Faxed Referral Forms Makes referral easy Inexpensive way to work on E.I. System
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Research to Practice: Presentations Content: Importance of E.I. Talking to parents How to identify E.I. system/program How to refer to E.I.
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Research to Practice: Materials Binder Videos Promo items
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Post Cards One card/mo., 7 mo. Different topic on each Different raffle on each
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Large Group 3x2 hours Designed to attract Intensive recruitment Result
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Strategies for Effective and Efficient Keiki (Child) Find - SEEK Evaluation/needs assessment (statewide) Logic model & research design Evaluation/needs assessment (specific communities) Strategizing/implementation Evaluation & reconceptualization
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Individual Presentations 2 x 1 hour, flexible Designed to attract Intensive recruitment Result
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Results - Evaluation Post Cards Presentations
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Results - Evaluation PRE TO POST CHANGE IN SURVEYS: Intervention M = 5.6 points SD = 7.1 Range –2.2 to 19.21 Comparison M = 1.6 points SD = 10.6 Range –13.07 to 15.52
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PRE TO POST CHANGE IN REFERRALS: Intervention PCPs made significantly MORE referrals after outreach – over 6.5 times the average variation before outreach! The change for Comparison PCPs was negligible The strategy was too time- intensive to be sustainable Results - Evaluation ’99-’00Outreach
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Post-Intervention: Surveys & Referrals Are Again Related R = 0.455 p < 0.05
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Strategies for Effective and Efficient Keiki (Child) Find - SEEK Evaluation/needs assessment (statewide) Logic model & research design Evaluation/needs assessment (specific communities) Strategizing/implementation Evaluation & reconceptualization Strategizing/implementation – again Next steps
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Community 2: Pre-Intervention Surveys & Referrals Are Related R = 0.355 p < 0.05
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Strategy Two E.I. programs use natural communication opportunities to share facts about Early Intervention Continue presentations individualized for each PCP
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Working on the Public Side Selling the idea Identifying leaders Building commitment Customizing materials and processes Developing and customizing evaluation methodology
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Communications to PCPs “Thank you for your referral” Referral status Screening/assessment reports Invitation to attend or provide input for IFSP Copy of the IFSP Discharge notice
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Results – Evaluation Round 2 Presentations –Two, to 68% of PCPs –One, to 16% of PCPs –None, to 16% of PCPs Enhanced communications –343 sent from E.I. programs to PCPs about 111 individual children
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343 separate communications 111 children (range 1- 9 per child, M = 3.2, SD = 1.7, mode = 3) 13 PCPs (range 2-111 per PCP, M = 26.4, SD = 31.4, median = 11) Results – Evaluation Round 2
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PRE TO POST CHANGE IN SURVEYS: Intervention M = 14.0 points SD = 11.5 Range –12.5 to 28.5 Comparison M = 5.2 points SD = 14.4 Range –11.1 to 29.4
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Results – Evaluation Round 2 PRE TO POST CHANGE IN REFERRALS: Intervention PCPs made MORE referrals after outreach – over 5.25 times the average variation before outreach! Significance could not be calculated. The change for Comparison PCPs was again negligible. Presentations were still too time-intensive to be sustainable. 2001Outreach
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Community 2: Post-Intervention Surveys & Referrals Related Again R = 0.492 p < 0.01
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Surveys & Referrals Are Related CommunityMeasurement Period R*p <NReferral Years 1Pre0.6450.01204.5 years: 1995 to mid-1999 1Post0.4550.05201 year: 3/2000 to 2/2001 2Pre0.3550.05323 years: 5/1998 to 4/2001 2Post0.4920.01341 year: 11/2001 to 10/2002
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Is It Sustainable? The communications were generally accepted and implemented by programs. Most are still using these, even though we’ve finished study implementation. It may be possible for E.I. program staff to do short, possibly informal presentations of information to PCPs over a longer period.
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Conclusions Evidence-based strategies must be continually updated by incorporating developing evidence External agents can facilitate communication across the public/private divide Practice changes by public and private providers can increase the number of babies with special needs identified by PCPs and referred to Early Intervention programs
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Beppie J. Shapiro, Ph.D. beppie@hawaii.edu ph. 808-973-9644 Leave no child behind! Contact us for more information: Taletha M. Derrington, M.A. taletha@hawaii.edu ph. 808-973-9643 www.seek.hawaii.edu
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