improving identification of babies with special needs: beppie j. shapiro, ph.d. and taletha m....
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Improving Identification of Improving Identification of Babies with Special Needs: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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ORGANIZERORGANIZER
• Context• Needs Assessment• Strategies for Effective
and Efficient Keiki (Child) Find
• Evaluation of Strategies
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ContextContext
• Mandated services for infants and toddlers under IDEA (E.I.)
• Required Child Find function
• Community programs
• No history of evaluation
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DefinitionsDefinitions
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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SERVEDSERVED2000 Child Count,% of live births2000 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:Child Find: A Conceptual FrameworkA Conceptual Framework
NoticersNoticers
Parents
DoctorsChild careNursesHome visitors
IdentificatiIdentificationon
Noticer’sKnowledge& Skills
EligibilityHow to tell if
eligible
ReferralReferral
Noticer’s Knowledge& Beliefs
How to refer
BenefitsPast
experience
Referral Referral
ProcessProcess
EfficientEffectiveFriendly
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Evaluation of Child FindEvaluation 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 FindEvaluation 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 FindEvaluation 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:SURVEY QUESTION:Where would PCPs refer a child Where would PCPs refer a child
about about whom they had developmental whom they had developmental
concerns? concerns?
57
40
0
25
50
75
100
% Who Would Refer to E.I.
Pediatricians
Family Physicians
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SURVEY QUESTION:SURVEY QUESTION:E.I. in Hawai`i is Provided E.I. in Hawai`i is Provided
At No Cost To FamiliesAt No Cost To Families
146
0
25
50
75
100
% of PCPs Who Knew
Pediatricians
Family Physicians
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SURVEY QUESTION: EligibilitySURVEY QUESTION: Eligibility
0
25
50
75
100
Pediatricians
Family Physicians
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Barriers to PCP ReferralBarriers 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 ResponsesStakeholder Responses
Proactive “need to fix”
Energized Increased size of
stakeholder group Found new resources
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Strategies for Effective and Strategies for Effective and Efficient Keiki (Child) Find - Efficient Keiki (Child) Find -
SEEKSEEK
• Evaluation/needs assessment (statewide)• Logic model & research design • Evaluation/needs assessment (specific
communities)• Strategizing/implementation
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Logic ModelLogic ModelInitial
context
PCP skills
ReferralProcess
PCP beliefs
PCPknowledge
Proximaleffects
Better attitudes
Moredevelopmental
screening
PCPs understandEI & benefits
Fewerbarriers
Outcomes
PCPs refermore babies
PCPs identifymore CSN
Strategies
Information
Persuasivemessages
Make it easy
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Evaluation Measures:Evaluation Measures:Pre vs. PostPre vs. Post
PREMEASUREMENT:
# of ReferralsSurveys
Intervention Community PCPs
HOW?OUTREACH
Comparison Community PCPs
WHO?Intervention
Community PCPs
POSTMEASUREMENT:
# of ReferralsSurveys
Intervention Community PCPs
Comparison Community PCPs
Post-Only ComparisonCommunity PCPs (survey only)
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Selecting CommunitiesSelecting Communities
StakeholdersSuggest criteriaPrioritize criteriaCollect dataRate
communities
Criteria Same services menu Same # of kids < age
5 Same number of PCPs Can be isolated
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MeasurementMeasurement
Mailed surveys Number of
referrals by individual PCPs
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Survey DisseminationSurvey 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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SurveySurvey Return Rate Return Rate
Survey Intervention Community
Comparison Community
Post-Comparison Community
TOTAL
Pre-Intervention 84% 88% N/A 86%
Post-Intervention
75% 78% 77% 77%
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Surveys & Referrals Are RelatedSurveys & Referrals Are Related
R = 0.645 p < 0.01
Pre-Intervention Surveys
90807060504030
Pre
-In
terv
en
tion
Re
ferr
als
Pe
r Q
ua
rte
r
3.0
2.5
2.0
1.5
1.0
.5
0.0
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Barriers to Identification and Barriers to Identification and Referral by PhysiciansReferral by Physicians
Attitudes, beliefs Knowledge Practice E.I. system Barriers to outreach
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Survey Data Shows BarriersSurvey Data Shows Barriers
0
25
50
75
100
Attitudes Knowledge Practice EI System
Attitudes
Knowledge
Practice
EI System
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Selecting A StrategySelecting A Strategy
Analyze barriers
Search literature
Consult experts
Conduct local focus groups & interviews
Match promising strategies with barriers
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Promising General StrategiesPromising 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 SelectedStrategies 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: Research to Practice: PresentationsPresentations
Content: Importance of E.I.Talking to parentsHow to identifyE.I. system/programHow to refer to E.I.
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Research to Practice: Research to Practice: MaterialsMaterials
Binder
Videos
Promo items
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Post CardsPost Cards
One card/mo., 7 mo. Different topic on
each Different raffle on
each
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Large Large GroupGroup
3x2 hours Designed to attract Intensive recruitment Result
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Strategies for Effective and Strategies for Effective and Efficient Efficient
Keiki (Child) Find - SEEKKeiki (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 PresentationsIndividual Presentations
2 x 1 hour, flexible Designed to attract Intensive recruitment Result
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Results - EvaluationResults - Evaluation
• Post Cards
• Presentations
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Results - EvaluationResults - Evaluation
PRE TO POST CHANGE IN SURVEYS:
Intervention M = 5.6 pointsSD = 7.1Range –2.2 to 19.21
Comparison M = 1.6 pointsSD = 10.6Range –13.07 to
15.52
Mean Change by Community
PCP Community
Comparison, n = 7Intervention, n = 9
Me
an
Ch
an
ge
in S
core
fro
m P
re t
o P
ost
30
25
20
15
10
5
0
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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 - EvaluationResults - Evaluation
Number of Referrals
0
20
40
60
80
100
120
1995 1996 1997 1998 00-01
Intervention
Comparison
’’99-’0099-’00OutreacOutreac
hh
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Post-Intervention: Post-Intervention: Surveys & Referrals Are Again Surveys & Referrals Are Again
RelatedRelated
Community 1: Post-Intervention Surveys
1009080706050403020
Com
mun
ity 1
: P
ost-
Inte
rven
tion
Ref
erra
ls/Q
rtr.
5
4
3
2
1
0
R = 0.455 p < 0.05
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Strategies for Effective and Strategies for Effective and Efficient Efficient
Keiki (Child) Find - SEEKKeiki (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-Community 2: Pre-Intervention Surveys & Intervention Surveys & Referrals Are RelatedReferrals Are Related
Community 2: Pre- Intervention Surveys
9080706050403020
Com
mun
ity 2
: P
re-I
nter
vent
ion
Ref
erra
ls/Q
rtr.
4
3
2
1
0
R = 0.355p < 0.05
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Strategy TwoStrategy 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 Working on the Public SideSide
Selling the ideaIdentifying leadersBuilding commitmentCustomizing materials
and processesDeveloping and
customizing evaluation methodology
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Communications to PCPsCommunications 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 Results – Evaluation Round 2Round 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 2Results – Evaluation Round 2
Num
ber
Sen
t
100
80
60
40
20
0
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Results – Evaluation Round 2Results – Evaluation Round 2
PRE TO POST CHANGE IN SURVEYS:
Intervention M = 14.0 pointsSD = 11.5Range –12.5 to 28.5
Comparison M = 5.2 pointsSD = 14.4Range –11.1 to 29.4
Mean Change by Community
PCP Community
Comparison, n = 13Intervention, n = 13
Me
an
Ch
an
ge
in S
core
fro
m P
re t
o P
ost
30
25
20
15
10
5
0
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Results – Evaluation Round 2Results – 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.
Number of Referrals
0
20
40
60
80
1998 1999 2000 2001
Intervention
Comparison
20012001OutreacOutreac
hh
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Community 2: Post-Community 2: Post-Intervention Surveys & Intervention Surveys & Referrals Related AgainReferrals Related Again
R = 0.492p < 0.01
Community 2: Post-Intervention Surveys
100806040200
Co
mm
un
ity 2
: P
ost
-In
terv
en
tion
Re
ferr
als
/Qrt
r.
4
3
2
1
0
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Surveys & Referrals Are Surveys & Referrals Are RelatedRelated
Community
Measurement Period
R* p < N Referral Years
1 Pre 0.645 0.01 20 4.5 years: 1995 to mid-1999
1 Post 0.455 0.05 20 1 year: 3/2000 to 2/2001
2 Pre 0.355 0.05 32 3 years: 5/1998 to 4/2001
2 Post 0.492 0.01 34 1 year: 11/2001 to 10/2002
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Is It Sustainable?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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ConclusionsConclusions
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, Beppie J. Shapiro, Ph.D. Ph.D. [email protected]@hawaii.eduph. 808-973-9644ph. 808-973-9644
Leave no child behind!Leave no child behind!Contact us for more information:Contact us for more information:
Taletha M. Taletha M. Derrington, M.A.Derrington, [email protected]@hawaii.eduph. 808-973-9643ph. 808-973-9643
www.seek.hawaii.eduwww.seek.hawaii.edu