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

ORGANIZERORGANIZER

• Context• Needs Assessment• Strategies for Effective

and Efficient Keiki (Child) Find

• Evaluation of Strategies

ContextContext

• Mandated services for infants and toddlers under IDEA (E.I.)

• Required Child Find function

• Community programs

• No history of evaluation

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.

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%

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

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.?

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.

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.

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

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

SURVEY QUESTION: EligibilitySURVEY QUESTION: Eligibility

0

25

50

75

100

Pediatricians

Family Physicians

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

Stakeholder ResponsesStakeholder Responses

Proactive “need to fix”

Energized Increased size of

stakeholder group Found new resources

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

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

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)

Selecting CommunitiesSelecting Communities

StakeholdersSuggest criteriaPrioritize criteriaCollect dataRate

communities

Criteria Same services menu Same # of kids < age

5 Same number of PCPs Can be isolated

MeasurementMeasurement

Mailed surveys Number of

referrals by individual PCPs

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

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%

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

Barriers to Identification and Barriers to Identification and Referral by PhysiciansReferral by Physicians

Attitudes, beliefs Knowledge Practice E.I. system Barriers to outreach

Survey Data Shows BarriersSurvey Data Shows Barriers

0

25

50

75

100

Attitudes Knowledge Practice EI System

Attitudes

Knowledge

Practice

EI System

Selecting A StrategySelecting A Strategy

Analyze barriers

Search literature

Consult experts

Conduct local focus groups & interviews

Match promising strategies with barriers

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

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

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.

Research to Practice: Research to Practice: MaterialsMaterials

Binder

Videos

Promo items

Post CardsPost Cards

One card/mo., 7 mo. Different topic on

each Different raffle on

each

Large Large GroupGroup

3x2 hours Designed to attract Intensive recruitment Result

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

Individual PresentationsIndividual Presentations

2 x 1 hour, flexible Designed to attract Intensive recruitment Result

Results - EvaluationResults - Evaluation

• Post Cards

• Presentations

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

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

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

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

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

Strategy TwoStrategy Two

E.I. programs use natural communication opportunities to share facts about Early Intervention

Continue presentations individualized for each PCP

Working on the Public Working on the Public SideSide

Selling the ideaIdentifying leadersBuilding commitmentCustomizing materials

and processesDeveloping and

customizing evaluation methodology

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

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

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

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

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

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

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

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.

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

Beppie J. Shapiro, Beppie J. Shapiro, Ph.D. Ph.D. beppie@hawaii.edubeppie@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, M.A.taletha@hawaii.edutaletha@hawaii.eduph. 808-973-9643ph. 808-973-9643

www.seek.hawaii.eduwww.seek.hawaii.edu