Engaging Engaging Audiologists in Audiologists in

EHDI Data SystemsEHDI Data Systems

Les R. Schmeltz, Au.D.Les R. Schmeltz, Au.D.NCHAM &NCHAM &

Arizona School of Health SciencesArizona School of Health Sciences

Randi Winston, Au.D.Randi Winston, Au.D.NCHAM &NCHAM &

The EAR Foundation of ArizonaThe EAR Foundation of Arizona

Faculty Disclosure Faculty Disclosure InformationInformation

• In the past 12 months, we have not had a In the past 12 months, we have not had a significant financial interest or other significant financial interest or other relationship with the manufacturer(s) of the relationship with the manufacturer(s) of the product(s) or provider(s) of the service(s) product(s) or provider(s) of the service(s) that will be discussed in our presentation.that will be discussed in our presentation.

• This presentation will not include discussion This presentation will not include discussion of pharmaceuticals or devices that have not of pharmaceuticals or devices that have not been approved by the FDA and will not been approved by the FDA and will not discuss unapproved or “off-label” uses of discuss unapproved or “off-label” uses of pharmaceuticals or devices.pharmaceuticals or devices.

Goals of EHDIGoals of EHDI• All newborns will be screened for hearing loss before All newborns will be screened for hearing loss before

1 month of age. 1 month of age. • All infants referred from screening will have All infants referred from screening will have

diagnostic evaluations before 3 months of age. diagnostic evaluations before 3 months of age. • All infants identified with hearing loss will receive All infants identified with hearing loss will receive

appropriate medical, audiologic, and educational appropriate medical, audiologic, and educational intervention services before 6 months of age. intervention services before 6 months of age.

• All infants with hearing loss will have a medical All infants with hearing loss will have a medical home. home.

• Every state will have a complete EHDI Tracking and Every state will have a complete EHDI Tracking and Surveillance System to minimize loss to followup. Surveillance System to minimize loss to followup.

• All families will receive culturally-competent family All families will receive culturally-competent family support. support.

• Every state will do regular systematic monitoring and Every state will do regular systematic monitoring and evaluation to improve the effectiveness of the EHDI evaluation to improve the effectiveness of the EHDI program. program.

All newborns will be All newborns will be screened for hearing loss screened for hearing loss

before 1 month of age.before 1 month of age.• Vast majority of babies ARE screened Vast majority of babies ARE screened

prior to discharge from newborn nurseryprior to discharge from newborn nursery• Many programs offer out-patient Many programs offer out-patient

screening for babies not screened by screening for babies not screened by dischargedischarge

• Most hospitals are reliable reporters of Most hospitals are reliable reporters of screening results to EHDI programscreening results to EHDI program

• Nationally, over 90% of babies are Nationally, over 90% of babies are screened screened

All infants referred from All infants referred from screening will have screening will have

diagnostic evaluations diagnostic evaluations before 3 months of age.before 3 months of age.

5.57% of babies screened needed 5.57% of babies screened needed audiological evaluations (47 states)audiological evaluations (47 states)

55.09% of babies who needed diagnostic 55.09% of babies who needed diagnostic evaluations had hearing status confirmed evaluations had hearing status confirmed by 3 months of age (36 states—range was by 3 months of age (36 states—range was from 5% in 3 states to 90% in 5 states)from 5% in 3 states to 90% in 5 states)

Monitoring compliance with this goal Monitoring compliance with this goal requires the EHDI program receive requires the EHDI program receive appropriate information from audiologistsappropriate information from audiologists

All infants identified with hearing All infants identified with hearing loss will receive appropriate loss will receive appropriate

medical, audiologic, and medical, audiologic, and educational intervention services educational intervention services

before 6 months of agebefore 6 months of age• Monitoring compliance with this Monitoring compliance with this

goal requires the EDHI program to goal requires the EDHI program to receive appropriate data from the receive appropriate data from the medical home, audiologist and early medical home, audiologist and early intervention providers.intervention providers.

All infants with hearing loss All infants with hearing loss will have a medical home. will have a medical home.

• Monitoring compliance with this Monitoring compliance with this goal requires the EHDI program goal requires the EHDI program receive appropriate data from the receive appropriate data from the medical community.medical community.

Every state will have a complete Every state will have a complete EHDI Tracking and Surveillance EHDI Tracking and Surveillance

System to minimize loss to System to minimize loss to followup.followup.

• Monitoring this goal is difficult Monitoring this goal is difficult because of the ambiguity of because of the ambiguity of “complete” and the definition of “lost “complete” and the definition of “lost to followup.”to followup.”

• A Tracking and Surveillance System A Tracking and Surveillance System is incomplete if data are not being is incomplete if data are not being received from professionals involved received from professionals involved in every step of the processin every step of the process

All families will receive All families will receive culturally-competent family culturally-competent family

support.support.• Compliance with this goal requires Compliance with this goal requires

the EHDI program receive feedback the EHDI program receive feedback from the families served.from the families served.

Every state will do regular Every state will do regular systematic monitoring and systematic monitoring and evaluation to improve the evaluation to improve the effectiveness of the EHDI effectiveness of the EHDI

programprogram..• This goal requires the EHDI This goal requires the EHDI

program to have timely, accurate program to have timely, accurate data reporting from screening data reporting from screening facilities, audiologists, medical facilities, audiologists, medical personnel, early intervention personnel, early intervention providers and families.providers and families.

Required to report to a Required to report to a state agency when a child state agency when a child with permanent hearing with permanent hearing

loss is identified:loss is identified:• Physicians:Physicians:

– Yes (10 states)Yes (10 states) No (25 states)No (25 states)

• Audiologists:Audiologists:– Yes (25 states)Yes (25 states) No (19 states)No (19 states)

• Others:Others:– Yes (11 states)Yes (11 states) No (27 states)No (27 states)

Comments:Comments:““Audiologists encouraged, but not Audiologists encouraged, but not required, to report to ISDH”required, to report to ISDH”

““Not required, but most Not required, but most audiologists report results to audiologists report results to EHDI on form sent to parents EHDI on form sent to parents recommending the assessment”recommending the assessment”

““Not required. When new Birth Not required. When new Birth Information Network is Information Network is implemented, the language is implemented, the language is supportive of reporting ‘birth supportive of reporting ‘birth defects’ to the health defects’ to the health department.”department.”

Audiologists are not statutorily Audiologists are not statutorily required to report to Sound required to report to Sound Beginnings, but many do.”Beginnings, but many do.”

Roles of audiologist in Roles of audiologist in EHDIEHDI

• Receives initial test dataReceives initial test data• Provides rescreen and diagnostic dataProvides rescreen and diagnostic data• Provides amplification data and monitoringProvides amplification data and monitoring• Coordinates or initiates referral to early Coordinates or initiates referral to early

intervention provider(s)intervention provider(s)• Counsels parents regarding Counsels parents regarding

communication choicescommunication choices• Sees that infant moves appropriately Sees that infant moves appropriately

through the processthrough the process

Without Audiological Without Audiological Data:Data:

• EHDI programs cannot track individual EHDI programs cannot track individual babies who do not pass the screeningbabies who do not pass the screening

• EHDI programs cannot identify babies with EHDI programs cannot identify babies with hearing loss who may be in need of hearing loss who may be in need of additional servicesadditional services

• EHDI programs cannot determine if babies EHDI programs cannot determine if babies at risk for hearing loss do develop a lossat risk for hearing loss do develop a loss

• EHDI programs cannot systematically EHDI programs cannot systematically monitor and evaluate the effectiveness of monitor and evaluate the effectiveness of the EHDI programthe EHDI program

Why data may be Why data may be missing:missing:

• Lack of knowledge:Lack of knowledge:– Program may be tracking infantProgram may be tracking infant– EHDI program procedures EHDI program procedures – Importance of data to programImportance of data to program– What data needs to be submittedWhat data needs to be submitted– Whose job it is to submit the dataWhose job it is to submit the data– Timelines of EHDI programTimelines of EHDI program

Why data may be Why data may be missing:missing:

• Privacy concerns:Privacy concerns:– HIPAAHIPAA– Lack of legislative mandateLack of legislative mandate– Parent does not release informationParent does not release information– ““Big brother”Big brother”

Why data may be missingWhy data may be missing

• Lack of communicationLack of communication– Audiologists may not be brought “on Audiologists may not be brought “on

board” by the EHDI programsboard” by the EHDI programs– Audiologists may not have a clear Audiologists may not have a clear

understanding regarding the importance understanding regarding the importance of their role in the “big picture”of their role in the “big picture”

– Mechanisms for reporting audiological Mechanisms for reporting audiological outcomes to the EHDI program may not outcomes to the EHDI program may not be well establishedbe well established

Why data may be Why data may be missing:missing:

• Other reasons:Other reasons:– May not have proper equipment to May not have proper equipment to

reportreport– No reimbursement for reportingNo reimbursement for reporting– Final diagnosis may be pending medical Final diagnosis may be pending medical

or other referralor other referral– May be waiting until all activity is May be waiting until all activity is

complete (amplification, early complete (amplification, early intervention)intervention)

Engaging AZ Engaging AZ Audiologists:Audiologists:

• Audiologists are pulled into EHDI Audiologists are pulled into EHDI program as team players and program as team players and collaborators collaborators – Community audiology meetings are held Community audiology meetings are held

with other EHDI stakeholderswith other EHDI stakeholders•Educating audiologists on the importance Educating audiologists on the importance

of their role relative to the EHDI processof their role relative to the EHDI process•Audiologist’s barriers, issues and needs Audiologist’s barriers, issues and needs

are discussedare discussed•Collaborative problem solving often Collaborative problem solving often

occursoccurs

Engaging AZ Engaging AZ AudiologistsAudiologists

• Collaboration with audiologists in Collaboration with audiologists in developing state guidelines for newborn developing state guidelines for newborn hearing screening and pediatric hearing screening and pediatric diagnosisdiagnosis

• Annual pediatric workshops are held to Annual pediatric workshops are held to assist audiologists in updating skills and assist audiologists in updating skills and to provide networking opportunitiesto provide networking opportunities

• Audiologists are invited to sit on various Audiologists are invited to sit on various EHDI taskforces EHDI taskforces

• Annual CDC data sharedAnnual CDC data shared

Engaging AZ Engaging AZ AudiologistsAudiologists

• Legislation passed in May 2005 Legislation passed in May 2005 requiring the reporting of all data requiring the reporting of all data – Developed Audiology reporting form Developed Audiology reporting form

• Only included essential data elements Only included essential data elements • Site visits made to introduce and implement Site visits made to introduce and implement

formform

Comments and QuestionsComments and Questions