Indiana’s Universal Newborn Indiana’s Universal Newborn Hearing Screening ProgramHearing Screening Program

Weilin Long, M.A., M.P.A.

Indiana State Department of Health

Newborn Screening Section

Some of the Key Players Who Some of the Key Players Who Are With Me Today:Are With Me Today:

Charlene Graves, M.D., Medical Director of Indiana State Newborn Screening Programs

Cindy Lawrence, M.A.T., Assistant Director of Indiana School for the Deaf Outreach Program

Jane Metzger, M.Aud., Regional Consultant

Molly Pope, M.A.T., Regional Consultant Coordinator

Michelle Wagner-Escobar, M.A., Regional Consultant

HistoryHistory

Professional sensibility/concerns Parent/consumer advocacy IPN’s subcommittee - 1998 Public Law 91-1999 Advisory Committee appointed by the

Governor – 1999-2000 Program preparation and full

implementation – hospital screening - 2000

HistoryHistory

Less than 20 hospitals with UNHS program in 1994

46 with UNHS in 199699 with UNHS in 2000 (94%)102 with UNHS in 2001 (100%)105 with UNHS in 2002 (100%)

Including 2 midwife facilities

UNHS LawUNHS Law

Legislatively mandated program

“… every infant shall be given a physiologic hearing

screening examination at the earliest feasible time

for the detection of hearing impairments”

IC 16-41-17-2

5/1999

Program GoalsProgram Goals

Physically screen all infants in Indiana prior to discharge from hospital;

Perform diagnostic evaluation by three months of age; and

Enroll in early intervention by six months of age

Identify Key PlayersIdentify Key Players

ISDHFirst StepsHospitalsPrimary care physiciansSpecialists/audiologistsPublic health nursesParents/families

TechnologyTechnology

Promote communication Encourage collaborationAdopt NBS follow-up modelsOutreach to local communitiesLearn from other statesDevelop tracking and follow-up data

system

Regional Outreach ProgramRegional Outreach Program

Transit the program from hospital-centered screening program (1st year) to community-based, culturally sensitive program

. MCHB funded

First Transition

8/2001

1

2

4

3

65

Ad

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s

Ad

ams

Co

Mem

Ho

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Allen Lutheran Hosp Parkview Mem St Joe Med Cen

– Ft Wayne

DeKalb DeKalb Mem

Hosp

Dubois Memorial

Hosp &Health Care –Jasper

St JosephHosp – Dea-coness –Huntingburg

Blackford Blackford Co

Hosp

Cass Logansport

Mem Hosp

Clinton St Vincent

Franklin Hosp

Delaware Ball Mem

Hosp

Decatur Decatur

Mem Hosp

Bar

tho

lom

ew

Col

um

bus

Reg

Hos

p

Dearborn Dearborn Hosp

Clark Clark Mem

Hosp

Daviess Daviess

Co Hosp

Clay St Vin-

centClay Co

Elkhart Elkhart Gen

Hosp Goshen Gen

Hosp

Fayette Fayette Mem

Hosp

Floyd Floyd Mem Hosp

Fulton Woodlawn

Hosp

Gibson Gibson Gen Hosp

Grant Marion Gen

Hosp

Greene Greene Co Gen Hosp

Hamilton Riverview

Hosp

Hancock Hancock

MemHosp

Harrison Harrison Co

Hosp

Hendricks Hendricks

CommHosp

Henry Henry Co

Mem Hosp

Howard Howard Comm Hosp St Joe Hosp/Health Care

Ctr - Kokomo

Hu

nti

ng

ton

Par

kvi

ew H

ealt

hC

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Jackson Memorial Hosp –

Seymour

Jasper Jasper Co

Hosp

Jay Jay Co Hosp

Jefferson King’s Daugthers

Hosp

Johnson Johnson

MemHosp

Kn

ox

Go

od S

amar

itan

Ho

sp

Kosciusko Kosciusko

CommHosp

LaGrange LaGrange Hosp

Lake Comm Hosp of Munster Methodist Hosp – Gary Methodist Hosp –

Merrillville Saint Anthony Med Cen

of Crown Point Saint Catherine Hosp of

East Chicago Saint Margaret Mercy –

Hammond Saint Margaret Mercy –

Dyer Saint Mary's Med Cen -

Hobart

LaPorte LaPorte Hosp St Anthony

Hosp –MichiganCity

Lawrence Bedford

Medical Ctr Dunn Mem

Hosp

Madison Comm Hosp of

Anderson St John Med Cen St Vincent Mercy

Hosp – Elwood

Marion Columbia

Women's Hospof Indpls

Comm Hosp ofIndpls1. East2. North3. South

Methodist Hosp -Indianapolis

Nurse Midwives Riley Hosp - Data

ManagementOffice

St Francis Hos-pital Cen

St Vincent Hosp& Health CareCen

Wishard MemHosp

University Hos-pital

Marshall Comm Hosp

of Bremen St Joe Hosp –

Marshall Co

Mia

mi

Du

kes

Mem

Ho

sp

Monroe Blooming-

ton Hosp

Montgomery St Clares Med

Center

Vigo Columbia Terre Haute Union Hosp – Terre

Haute

Noble Parkview Noble

Hosp

Orange Bloomington

Hosp ofOrange Co

Perry Perry Co

MemHosp

Porter Portage

CommHosp

PorterMemHosp

Pulaski Pulaski Mem

Hosp

Putnam Putnam Co

Hosp

Randolph St Vincent

RandolphHosp

Scott Scott Co Mem

Hosp

St. Joseph Ancilla Health

Care Mem Hosp –

South Bend St Joseph Med

Cen – SouthBend

Starke Starke Mem

Hosp

Steuben Cameron

Mem Hosp

Tippecanoe Lafayette

Home HospTipton

Tipton CoMem Hosp

Vanderburgh Deaconess Hosp St Mary’s Med

Ctr – Evansville St Mary’s River-

side Hosp

Vermillion West Central Comm

Hosp

Morgan Morgan Co Mem Hosp St Francis Hosp –

Mooresville

Wa

ba

sh

Wab

ash

Co

Ho

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Washington Washington Co

Mem Hosp

Wayne Reid Hosp &

Healh CareCtr

Wells Bluffton Reg

Med Ctr Caylor-Nickel

Hosp

White White Co Mem

Hosp

Whitley Whitley

Co MemHosp

Ripley Margaret

MaryCommHosp

Sullivan Sullivan Co

CommHosp

Newton

BentonCarroll

Lake

St. Joseph

Wells

Black-ford

Howard

Boone

Warren

FountainMadison

MarionParke

MorganShelby

Rush

Martin

Vigo

UnionFayette

Pike

Owen

Ver

mil

lio

n

Warrick

Vander-burgh

Posey

Dubois

Spencer

Brown

Crawford

Franklin

Floyd

Scott

Jennings

Switzerland

Ohio

Dearborn

Regional Outreach ProgramRegional Outreach Program

Involve community/familyEnsure technical assistance available

to local communitiesPromote timely diagnostic evaluation

and early interventionRefine Indiana’s UNHS through

outreach activities

Centralized Follow-up SystemCentralized Follow-up System

Full-time nurse consultant positionFollow-up with hospital, PCP, PHN,

parent . Not screening . Screening not completed

. Unauthorized refusal . Lost of follow-ups

. Transferred without screening

Second TransitionRonnie Reuveny

3/2002

Current Status Current Status (January – December 2002(January – December 2002))

100% hospitals/birthing institutions participated and reported

98% infants were screened 9.7% did not pass initial screenings 97.5% of those who did not pass initial screening received

repeat screening 1.4% (1131) did not pass repeat screening 1709 referrals were made for not passed screenings - 967

to First Steps; 551 to PCPs; and 191 to specialists 422 referrals were made due to high risk factors – 422 to

First Steps, 203 to PCP, and 73 to specialists

Current Status Current Status (January – December 2002)(January – December 2002)

Out of 967 babies who did not pass hearing screening and were referred to First Steps, 922 have received follow-up services

Age at Authorization Authorized for Hearing

Services

0-3 Month 566 (61%)

4-6 Month 186 (20%)

7-9 Month 170 (18%)

?…?…?…??…?…?…?

What happened to those who did not pass hearing screening before they left the hospital?

Did they receive adequate information about early intervention services?

Were they informed of audiologic resource available in their area?

What happened to those who chose not to use First Step early intervention services?

Third Transition

Another Transition …Another Transition …

Formed a Parent Focus Group

- Develop a Parent Satisfaction Survey

_ Evaluate program and identify needs and gaps

Surveyed 320 licensed audiologists in Indiana

- Identify audiologists available in Indiana

- Outreach, educate and implement audiologic assessment evaluation and report system

10/2002

UNIVERSAL NEWBORN HEARING SCREENING

PARENTS SATISFACTION SURVEY

The purpose of this survey is to find out how satisfied you are with the universal newborn hearing screening

process. Please respond to all questions. Your input is important to continued success of this program. The

information you provide here is strictly confidential and is used for quality assurance purposes only.

Name of Hospital where your baby was born

Baby’s date of birth

Please circle either “yes” or “no” as answer to these questions.

BEFORE THE SCREENING:

1. Was the procedure for the hearing screen explained to you? YES NO

2. Did you understand why your baby was being screened? YES NO

3. Were your questions answered in a way you could understand? YES NO

DURING THE SCREENING:

1. Were you able to observe the screening? YES NO

(if no, please explain why)

2. Were you comfortable with the procedure? YES NO

(if no, please explain why)

AFTER THE SCREENING:

1. Were you given the results of the screen before you left the hospital? YES NO

2. Did you understand the results of the screen? YES NO

(if no, please explain why)

IF YOUR CHILD DID NOT PASS THE SCREENING:

1. Did the screener explain “why” your baby did not pass the hearing screen? YES NO

2. Did the screener appear sensitive, friendly, patient, and neutral while explaining the results?

YES NO

3. Was a follow-up appointment made for further testing? YES NO

4. Was FIRST STEPS information explained to you? YES NO

5. Was the information about FIRST STEPS clear? YES NO

6. Were you given a phone number / person’s name for FIRST STEPS? YES NO

Audiologic Evaluation and Audiologic Evaluation and Report SystemReport System

GuidelinesReport forms and instructionsSystem by regionsTracking and follow-ups

1/2003

Audiologic Evaluation and Audiologic Evaluation and Report SystemReport System

Encourage audiologists to provide information to the ISDH UNHS

- history

- degree and type of hearing loss

- referral informationHelp to identify those who chose not to use

First Steps early intervention services

Ensure FundingEnsure Funding

Increase state NBS fee to include budget for UNHS

Rule change is in process

10/2002 -

Next Transition…Next Transition…

Medical homes

Early intervention to accessible schools

For More Information…For More Information…

Please visit our display booth

THANK YOU!