Missouri Newborn Hearing Screening: A status report Jenna M. Bollinger, B.A. Department of Communication Disorders & Deaf Education Fontbonne University Spring 2004

Abstract In 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.

Purpose  Compare the principles delineated by the Joint Committee on Infant Hearing (JCIH) year 2000 position statement with Missouri’s newborn hearing screening program

Question   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?

Procedures  Reviewed existing research regarding universal newborn hearing screening  Reviewed JCIH Year 2000 Position Statement  Developed research questions  Interviews Program Manager of MO NHS Program Manager of MO NHS Regional Representatives Regional Representatives Screening Staff from various hospitals (metropolitan, suburban, rural) Screening Staff from various hospitals (metropolitan, suburban, rural) State Audiologic Consultant State Audiologic Consultant

JCIH 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 One  It appears all hospitals are using physiologic measures of screening.  Because the law only applies to hospital and birthing facility births, infants born in the home are exempt from mandatory screening.  Current practice is consistent with MO law, however the law is not consistent with the JCIH principle.

JCIH 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 Two  MO law does not outline a timeline for follow-up.  Infants may be receiving follow-up testing consistent with the JCIH timeline, however the follow-up procedures aren’t initiated prior to 3 months of age.  Additionally, some families may have difficulty scheduling appointments depending on their location.

JCHI 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 Three  While the law does not acknowledge the 6 month deadline, it does indicate intervention in a timely manner.  Follow-up data is not kept at the state level regarding the provider and extent of early intervention services.

JCIH 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 Four  MO currently keeps a high risk registry.  Thus far, it has been difficult for screeners to report possible risk factors to the state due to the nature of the form/paperwork.  The state has revised the form and expects implementation soon.

JCIH Principle Five   Infant and family rights are guaranteed through informed choice, decision-making, and consent.

Findings: Principle Five  Hospitals present hearing screening as part of the newborn screening protocol.  Family has the right to refuse screening.  According to MO law, refusal of screening must be documented in writing.

JCIH 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 Six  HIPPA!!!

JCIH 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 Seven  Confidentiality is honored.  The state is recording data regarding the results of initial screening. A protocol is not available for documenting follow-up and intervention outcomes.  The data management system does not evaluate individual hospital outcomes.  Hospitals keep track of their own performance data

JCIH 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 Eight  MO law does not address quality indicators, compliance with legislation, or cost effectiveness issues.  Hospitals efforts to maintain “standard of care” tend to be self-monitoring.

Conclusions  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 about follow-up and intervention.  The state’s data management system makes it difficult for regional representatives to enter/access data.  Multiple services housed in multiple departments makes communication difficult.

Areas for Future Investigation  Enrollment in Intervention  Data Management Systems  Hospital Performance  Long-term Cost Effectiveness  Parent Attitudes/Satisfaction/Knowledge  Referral Process

References Joint Committee on Infant Hearing (2000). Joint Committee on Infant Hearing Year 2000 Position Statement. Audiology Today, August 2000 (Special Issue),  Background References Available Upon Request