primary goal i - identification/screening1 month d - diagnosis/evaluation3 months e - early...

Primary Goal

• I - Identification/Screening 1 month• D - Diagnosis/Evaluation 3 months• E - Early Intervention 6 months• A - Additional Assessment(s)• L - Linking to (2 days)• A - Appropriate • S - Services • A – And 45 days• P – Programs

Percent of Neonates Screened - 1993

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%NCHAM

Percent of Neonates Screened - 1995

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%NCHAM

Percent of Neonates Screened - 1996

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%NCHAM

Percent of Neonates Screened - 1997

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%

Percent of Neonates Screened - 1998

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%

Percent of Neonates Screened - 1999

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%NCHAM survey, 2000

Percent of Babies Screened - 2000

>90%

75-89%

60-74%

40-59%

25-39%

10-24%

5-9%

< 5%NCHAM survey, 2000

Early Hearing Detection and InterventionProgression of States towards Universal Newborn Hearing

Screening

1993 1995 1996 1997 1998 1999 2000

Year

0

10

20

30

40

50

Num

ber

of S

tate

s

<5% 6-9% 10-24% 15-39%

40-59% 60-74% 75-89% >90%

Average Age in Months

3

3

35

19

30

30

24

25

31

56

Coplan (1987)

Eissman et al. (1987)

Gustason (1987)

Meadow-Orlans (1987)

Yoshinago-Itano (1995)

Stein et al. (1990)

Mace et al. (1991)

O'Neil (1996)

Johnson et al. (1997)*

Vohr et al. (1998)*

0 10 20 30 40 50 60 70

*reports from programs with established statewide newborn hearing screening systems

Confirmation of Hearing Loss

Hawai'i EHDI ProgressAge of Identification and Intervention

Zero to Three Project

pre 1992 1993 1994 1995 1996 1997 1998

Year

0

10

20

30

40

50

60

Age in

Month

s

Identification Intervention

Pediatric Evaluations

• Use a combination of behavioral and objective tests to obtain frequency-specific, ear-specific, and family/child-specific information

• Ensure that referral sources have audiologists and associated professionals with appropriate knowledge and skills to perform pediatric evaluations and that the facility has the necessary instrumentation for the audiologists to obtain the necessary information

Basic Pediatric Auditory Evaluation

• Case History and Parental Report• Related Screenings / Referral Information• Age-appropriate Behavioral Assessment Protocols• Objective Assessment Protocols• Integration and Interpretation of Results• Counseling with Family and Professionals• Recommendations• Referrals

Ensuring Appropriate and Timely Diagnosis of Hearing Loss

• Develop collaborative efforts of hospitals and community referral sources

• Monitor data management, tracking and follow-up procedures

• Collect accurate contact information with a back-up (family member, friend, email address, cell phone number, etc.)

• Establish a brief time-frame between screening and follow-up measures

Timely Diagnosis (cont.)

• Clearly communicate follow-up procedures and schedule appointments with families –if possible, before they leave the facility

• Enlist support from medical community (pediatricians, medical home, etc.)

• Ensure proper training for all personnel in the EHDI program

• Address cultural and diversity issues as applicable for each phase of the EHDI program

Benchmarks (JCIH, 2000)

• Newborns screened by 1 month• Infants with hearing loss identified by 3 months• Infants enrolled in family-centered EI by 6 months• Professionals are knowledgeable• Amplification use begins within 1 month of

diagnosis• Ongoing audiological management - not to exceed

3 month intervals

Timeframe for Communication

• PL 105-17: IDEA– Referral for evaluation must be made to a

public agency within 2 working days of identification

– IFSP must be developed by a multidisciplinary team within 45 days of receiving the referral

• State and local policies and procedures

Using the Team Approach

• Developing and identifying professional interactions to ensure that families receive sensitive, timely, seamless service between screening, evaluation and early intervention services.

• Communication ACCESS is viewed as the key element for developing successful communication skills.

Information Wanted vs. Received by Parents at Hearing Loss ConfirmationInformation Wanted vs. Received by Parents at Hearing Loss Confirmation

Martin, George, O'Neal, & Daly (1987); *Sweetow & Barrager (1980)

Degree of loss

Auditory system

Amplification

Educational options

Speech/Lang dev

Etiology

Home activities

*Written Information

*Financial Support

*Emotional Support

*Parent Contacts

*Referral Sources

0 20 40 60 80 100

Wanted

Received

What do Parents Want?

• Early identification of hearing loss

• Timely receipt of test results

• Professional service and interactions

• Information (verbal and written)

• Emotional support

Summary - Uzcategui & Yoshinaga-Itano & SKI*HI

Parents’ Advice for Professionals

• Listen to us!

• Be knowledgeable

• Be honest

• Be professional

• Tell us everything

Mertens, D. M., Sass-Lehrer, M., & Scott-Olson, K. (2000) Sensitivity in the family-professional relationship: Developmental implications for young deaf and hard of hearing children. In P. Spencer, C. Erting, & M. Marschark (Eds.). The deaf child in the family and at school.

Parents’ Views of Professionals

• Professionals have information that parents do not have

• Professionals may have biases• Professionals wait until parents are “ready”• Professionals wait until parents ask• Professionals are uncomfortable sharing

“bad news”• Professionals may underestimate parents

Mertens, D. M., Sass-Lehrer, M. & Scott-Olsen, K. (2000)

Communication w/ Stakeholders

• Who? – Families, medical home, involved professionals, state

systems

• What? – Information! –available/not available, recommendations,

referrals, requests

• When? – As it’s available, follow-up letters as appropriate, w/in

outlined timelines

• How? – Person to person, written, as requested

Use Acronyms with Care

• Auditory Brainstem Response– ABR– BAER– BSER– BSERA– EAP– BEAP– BERA– AABR– SABR– ABAER

• Otoacoustic Emissions– OAE– EOAE– SFOAE– TEOAE– DPOAE– COAE– TOAE– DPE– ADP

Acronyms (cont.)

• EHDI• UNHS• IFSP• WBN• NICU• IDEA• JCAHO• PCP• HMO• DRG• CPT

• AAA• AAP• ASHA• CDC• HRSA• JCIH• MCHB• MDNC• NCCC• NCHAM • OSERS• RIHAP

Emerging Trends

• Minority populations are increasing

• By the year 2020, it is estimated that the minority populations will exceed the white population in the US

• The diversity of professionals serving those with hearing loss is limited

General Population vs Audiologists

38

62

Minority White

7

93

Minority White