Missouri Newborn Missouri Newborn Hearing Screening: Hearing Screening:

A status reportA status reportJenna M. Bollinger, B.A.Jenna M. Bollinger, B.A.

Department of Communication Disorders & Deaf EducationDepartment of Communication Disorders & Deaf EducationFontbonne UniversityFontbonne University

Spring 2004Spring 2004

AbstractAbstractIn January 2002, the state of Missouri began a Universal Newborn Hearing Screening (UNHS) program in response to the implementation recommendations made by the Joint Committee on Infant Hearing (JCIH) year 2000 position statement. These principles and guidelines addressed audiologic screening and data collection as well as follow-up and intervention, to improve services for infants and their families. After nearly two years of full implementation, this archival study set out to examine which aspects of Missouri’s Early Hearing Detection and Intervention program adhere to the principles and guidelines outlined by the JCIH. In order to draw conclusions regarding the current functioning of Missouri’s program several sources of existing data will be utilized. These sources include: intensive review of the JCIH principles and guidelines, interviews with health care professionals involved in the initial implementation, interviews with professionals involved in the present functioning of the program, and analysis of current research evaluating other UNHS programs. After examination of these sources, Missouri’s compliance with

individual principles will be discussed.

PurposePurpose Compare the principles delineated by the Compare the principles delineated by the

Joint Committee on Infant Hearing (JCIH) Joint Committee on Infant Hearing (JCIH) year 2000 position statement with year 2000 position statement with Missouri’s newborn hearing screening Missouri’s newborn hearing screening programprogram

QuestionQuestion What aspects of Missouri’s Early Hearing

Detection and Intervention (EHDI) program are consistent with the principles and guidelines outlined by the Joint Committee on Infant Hearing (JCIH) 2000?

ProceduresProcedures Reviewed existing research regarding universal Reviewed existing research regarding universal

newborn hearing screening newborn hearing screening Reviewed JCIH Year 2000 Position StatementReviewed JCIH Year 2000 Position Statement Developed research questionsDeveloped research questions InterviewsInterviews

Program Manager of MO NHS Program Manager of MO NHS Regional RepresentativesRegional Representatives Screening Staff from various hospitals (metropolitan, Screening Staff from various hospitals (metropolitan,

suburban, rural)suburban, rural) State Audiologic ConsultantState Audiologic Consultant

JCIH Principle OneJCIH Principle One All infants have access to hearing screening using a

physiologic measure. Newborns who receive routine care have access to hearing screening during their hospital birth admission. Newborns in alternative birthing facilities, including home births, have access to and are referred for screening before one month of age. All newborns of infants who require neonatal intensive care receive hearing screening before discharge from the hospital. These components constitute universal newborn hearing screening.

Findings: Principle OneFindings: Principle One It appears all hospitals are using It appears all hospitals are using

physiologic measures of screening. physiologic measures of screening. Because the law only applies to hospital Because the law only applies to hospital

and birthing facility births, infants born in and birthing facility births, infants born in the home are exempt from mandatory the home are exempt from mandatory screening. screening.

Current practice is consistent with MO law, Current practice is consistent with MO law, however the law is not consistent with the however the law is not consistent with the JCIH principle. JCIH principle.

JCIH Principle TwoJCIH Principle Two All infants who do not pass the birth admission

screen and any subsequent rescreening begin appropriate Audiologic and medical evaluations to confirm the presence of hearing loss before 3 months of age.

Findings: Principle TwoFindings: Principle Two MO law does not outline a timeline for MO law does not outline a timeline for

follow-up. follow-up. Infants may be receiving follow-up testing Infants may be receiving follow-up testing

consistent with the JCIH timeline, however consistent with the JCIH timeline, however the follow-up procedures aren’t initiated the follow-up procedures aren’t initiated prior to 3 months of age. prior to 3 months of age.

Additionally, some families may have Additionally, some families may have difficulty scheduling appointments difficulty scheduling appointments depending on their location. depending on their location.

JCHI Principle ThreeJCHI Principle Three All infants with confirmed permanent hearing

loss receive services before 6 months of age in interdisciplinary intervention programs that recognize and build on strengths, informed choice, tradition, and cultural beliefs of the family.

Findings: Principle ThreeFindings: Principle Three While the law does not acknowledge the 6 While the law does not acknowledge the 6

month deadline, it does indicate month deadline, it does indicate intervention in a timely manner. intervention in a timely manner.

Follow-up data is not kept at the state level Follow-up data is not kept at the state level regarding the provider and extent of early regarding the provider and extent of early intervention services. intervention services.

JCIH Principle FourJCIH Principle Four All infants who pass newborn hearing screening but

who have risk indicators for other auditory disorders and/or speech and language delay receive ongoing audiolgic and medical surveillance and monitoring for communication development. Infants with indicators associated with late-onset, progressive, or fluctuating hearing loss as well as auditory neural conduction disorders and/or brainstem auditory pathway dysfunction should be monitored.

Findings: Principle FourFindings: Principle Four MO currently keeps a high risk registry. MO currently keeps a high risk registry. Thus far, it has been difficult for screeners Thus far, it has been difficult for screeners

to report possible risk factors to the state to report possible risk factors to the state due to the nature of the form/paperwork.due to the nature of the form/paperwork.

The state has revised the form and The state has revised the form and expects implementation soon. expects implementation soon.

JCIH Principle FiveJCIH Principle Five Infant and family rights are guaranteed

through informed choice, decision-making, and consent.

Findings: Principle FiveFindings: Principle Five Hospitals present hearing screening as Hospitals present hearing screening as

part of the newborn screening protocol. part of the newborn screening protocol. Family has the right to refuse screening. Family has the right to refuse screening. According to MO law, refusal of screening According to MO law, refusal of screening

must be documented in writing.must be documented in writing.

JCIH Principle SixJCIH Principle Six Infant hearing screening and evaluation

results are afforded the same protections all other health care and educational information. As new standards for privacy and confidentiality are proposed, they must balance the needs of society and the rights of the infant and family, without compromising the ability of health and education to provide care.

Findings: Principle SixFindings: Principle Six HIPPA!!!HIPPA!!!

JCIH Principle SevenJCIH Principle Seven Information systems are used to measure and report

the effectiveness of EHDI services. While state registries measure and track screening, evaluation, and intervention outcomes for infants and their families, efforts should be make to honor a family’s privacy by removing identifying information wherever possible. Aggregate state and national data may also be used to measure and track the impact of EHDI programs on public heath and education while maintaining the confidentiality of individual infant and family information.

Findings: Principle SevenFindings: Principle Seven Confidentiality is honored.Confidentiality is honored. The state is recording data regarding the results The state is recording data regarding the results

of initial screening. A protocol is not available for of initial screening. A protocol is not available for documenting follow-up and intervention documenting follow-up and intervention outcomes. outcomes.

The data management system does not The data management system does not evaluate individual hospital outcomes. evaluate individual hospital outcomes.

Hospitals keep track of their own performance Hospitals keep track of their own performance datadata

JCIH Principle EightJCIH Principle Eight EHDI programs provide data to monitor

quality, demonstrate compliance with legislation and regulations, determine fiscal accountability and cost effectiveness, support reimbursement for services, and mobilize and maintain community support.

Findings: Principle EightFindings: Principle Eight MO law does not address quality MO law does not address quality

indicators, compliance with legislation, or indicators, compliance with legislation, or cost effectiveness issues.cost effectiveness issues.

Hospitals efforts to maintain “standard of Hospitals efforts to maintain “standard of care” tend to be self-monitoring. care” tend to be self-monitoring.

ConclusionsConclusions The majority of births are being screened.The majority of births are being screened.

Confidentiality is maintained.Confidentiality is maintained. Quality screening measures are used.Quality screening measures are used.

There is no data available to draw conclusions There is no data available to draw conclusions about follow-up and intervention.about follow-up and intervention.

The state’s data management system makes it The state’s data management system makes it difficult for regional representatives to difficult for regional representatives to enter/access data.enter/access data.

Multiple services housed in multiple departments Multiple services housed in multiple departments makes communication difficult.makes communication difficult.

Areas for Future InvestigationAreas for Future Investigation Enrollment in Intervention Enrollment in Intervention Data Management SystemsData Management Systems Hospital PerformanceHospital Performance Long-term Cost EffectivenessLong-term Cost Effectiveness Parent Attitudes/Satisfaction/KnowledgeParent Attitudes/Satisfaction/Knowledge Referral ProcessReferral Process

ReferencesReferencesJoint Committee on Infant Hearing (2000). Joint Joint Committee on Infant Hearing (2000). Joint

Committee on Infant Hearing Year 2000 Position Committee on Infant Hearing Year 2000 Position Statement. Audiology Today, August 2000 Statement. Audiology Today, August 2000 (Special Issue), 6-24.(Special Issue), 6-24.

Background References Available Upon RequestBackground References Available Upon Request