North Carolina CDC EHDI Grant (2001)

GRANT ABSTRACT

PROJECT NARRATIVE

Overview

The North Carolina General Assembly mandated implementation of Universal Newborn Hearing Screening (UNHS) in October 1999 (See Appendix VII). The North Carolina Department of Health and Human Services' (DHHS) plan for implementation is compiled in the NC Early Hearing Detection and Intervention (EHDI) 2001 Strategic Plan (See Appendix V). Program goals are to: (1) identify infants with permanent hearing loss before one month of age, (2) refer those infants that failed two newborn hearing screenings for diagnostic audiological evaluation before three months of age, and (3) refer infants with confirmed hearing loss for amplification selection and early intervention services before the age of six months.

Grant resources are requested to support North Carolina's existing EHDI program through: (1) enhancement of the EHDI data tracking and surveillance system by moving from a paper to a web-based data collection system, (2) collaboration with other agencies to establish a centralized population-based data warehouse, and (3) collaboration with other agencies to establish protocols for sharing data and tracking children through multiple data collection systems, and (4) expansion of the number of data points in the data collection system to support research relating to EHDI.

In Y2000, over 119,000 live births were reported in the State of North Carolina. Of the 92 birthing/neonatal facilities in North Carolina, including three military hospitals, all indicated that they were screening infants for permanent hearing loss before being discharge, but only 65 facilities reported data to the State of North Carolina. The data received was in the form of written logs from the newborn nursery or downloads of files from Natus ALGO machines. The data received was incomplete, missing, or inaccurately entered, making analysis almost impossible. Other data was submitted in aggregate form and reported outcomes were not linked to demographic data, making it impossible to track infants through the EHDI process. Below is a table showing data as reported. Information was from multiple sources and often included duplicates, especially when services were reported.

North Carolina

The data tracking and surveillance system was revised, effective January 1, 2001, to report outcomes for the initial hearing screening performed at birthing/neonatal facilities on the same paper form used to submit demographic information and blood spots for metabolic testing to the State Laboratory for Public Health (See Appendix III). As of January 1, 2001, all birthing/neonatal facilities had equipment and trained staff to implement the new reporting system and are required by a new State Rule to implement the reporting system (see Appendix VII).

When initial hearing screening outcomes are reported to the State Laboratory for Public Health, "refers" are reported to Child Service Coordinators in the child's county of resident for case management services, and to facilitate a referral for rescreen. "Refers" from the initial hearing screening are also reported to the child's primary care provider/medical home. At each step of the process beyond the initial hearing screen, information about the referral, if appropriate, is reported with the outcome to the State Laboratory for Public Health. Should an anticipated report from a referral not be received, the data reporting system provides the name of the provider, to whom the referral was made, and the date of the appointment. Regional Speech and Hearing Consultants, speech-language pathologists and audiologists who provide consultation and technical assistance to the Newborn Hearing Screening Program, contact that provider to assure that the appointment was kept and that outcomes are reported.

The following table indicates screening rates for the first two quarters of 2001.

Appendix VIII contains a listing of the birthing/neonatal facilities in North Carolina with reports of number of births and number of hearing screens for the first two quarters in Y2001. The following table provides aggregate data for the 66,441 births reported from January 1, 2001 through July 31, 2001 extracted from the new reporting system that became effective January 1, 2001.

While this data is an indication that infants are making their way through the process from identification to hearing aid fitting, (1) a significant number of providers are not reporting data to the State, (2) a significant number of providers are not making timely referrals, and (3) this report does not reflect outside sources of data that would account for additional outcomes for hearing aid fittings and other early intervention services. The issue of "non-reporting providers" and delayed referrals will be addressed by site visits to providers by the Division of Public Health Speech and Hearing Regional Consultants that provide technical assistance to the Newborn Hearing Screening Program. This grant will provide the resources to link with other data systems to provide better tracking of early intervention services and hearing aid fittings.

The Early Hearing Detection and Intervention Program has established goals and objectives (see Appendix V) that are monitored by the Department of Health and Human EHDI Workgroup and the EHDI Advisory Committee. These goals and objectives established by the Workgroup are based on the recommendations of the Joint Committee on Infant Hearing (JCIH). Program evaluation is based on the current status of the program's implementation and available data and is monitored monthly basis by the Workgroup and quarterly by the Advisory Committee. Written reports are being submitted annually to the North Carolina General Assembly and reports cards will be produced annually, beginning Spring 2002, to reflect each birth/neonatal facility's participation in the Newborn Hearing Screening Program.

Current Status of Paper-Based to Web-Based Data Collection Conversion at the State Laboratory for Public Health

The State Laboratory has recently completed three major components of the conversion from a paper-based data collection system to a web-based system. (1) All demographic records are currently entered at the State Laboratory by data entry staff and maintained in a web-based application. (2) Initial hearing screening outcomes, reported on the blood spot metabolic screening form are entered at the State Laboratory by data entry staff and maintained in a web-based application. (3) A web-based reporting system, available to the private care provider/medical home, including demographic, metabolic lab results and outcomes for the initial newborn hearing screening has been completed.

Funds obtained through this grant will allow for the further development of web-based modules to capture the rescreen, diagnostic evaluation, amplification selection, and protocols for linking with other data bases that will provide information about other early intervention services. In addition, these grant funds will provide resources to build capacity (training for all hospitals and private providers, and computer hardware/software for hospital newborn nurseries) for data to be input and reports available at the local level. Staff at the State Laboratory will refocus their efforts from data entry to data maintenance.

Needs

A paper reporting system for hearing screening is fully implemented utilizing the blood spot submission system with the State Laboratory for Public Health. However, several critical areas have been identified that are in need of improvement:

Streamlining the present data reporting system to assure that the reporting system is as convenient as possible for hospitals and private providers in order to facilitate complete and timely reporting. Hospitals and private providers are concerned about the increased paper work, duplication of information and time necessary to complete the forms. Submitting the data via the paper forms through the mail system uses up time better spent assuring that infants move through the EDHI process efficiently.

Expanding the system to accommodate collection of additional data points necessary needed to support future research that is immediately relevant to EHDI program services. The number of data points currently being collected is limited because the present system collects data via paper forms which is later entered into a central database. Additional data points need to be identified and collected to support research efforts. This additional information, collected through the present reporting system, would add an additional burden on hospitals and private providers who are already concerned about the increased time and duplicative paperwork created by the reporting requirements of universal newborn hearing screening.

Identifying children with congenital progressive or late onset of hearing loss.

Tracking high-risk children that may be at-risk for developing hearing loss. There is no centralized population-based data collection system for risk factors.

Tracking children beyond one year of age. The present system does not support longitudinal studies relating to costs and effectiveness of EHDI program or benefit analysis of early identification and intervention for children with hearing loss.

Coordinating multiple population-based data tracking systems that are maintained in North Carolina (e.g. the metabolic/newborn hearing screening database and the quasi-electronic birth certificate database). There are numerous programmatic databases that maintain some demographic data and services to clients. They would benefit from some relationship with a centralized demographic database. Information gathered in population-based databases is not used to populate service-based databases. Also, there are a number of children who receive services from private providers that do not report those services. Therefore they are not being tracked through current data reporting systems. There is great potential for children to be lost between existing data systems.

Tracking at-risk older children in order to identify late-onset hearing loss that develops subsequent to the neonatal period. Ideally, a tracking/surveillance system designed for monitoring infants that do not pass their neonatal hearing screening should be flexible enough that entry into the tracking/surveillance system can be made at a later time for those children with late-onset hearing loss. In addition, a complete tracking/surveillance system should have the capability of tracking children who are at risk for developing hearing loss even if they passed their initial hearing screening.

Proposed Interventions

In response to these identified needs, resources obtained through this grant will improve EHDI services and access about information through the development of:

A secure web-based electronic data collection system for hospitals and private providers to complete and submit required reports,

A secure web-based data reporting system of patient records so providers can track their client's current status and progress through the EHDI process,

A centralized demographic database that will be available to all state agencies, reducing the need to maintain multiple databases. Centralized demographic records that can be easily updated rather than being re-entered, thereby reducing duplication of effort,

An increased number of data points that can be easily adjusted as needed to support research,

A standardized data set that would increase the need to integrate with other databases,

New data tracking systems for high-risk infants, and identification and tracking of congenital progressive and late onset of hearing loss,

Interfaces with existing databases so children do not get lost between population-based and service-based databases,

Expanded data points that support genetic research enable North Carolina to make an impact in determining genetic and/or risk factors related to hearing loss, and

New data collection components that will capture information from private providers and case management staff about late onset/progressive hearing loss in older children and associated risk factors.

The overall target for this project is all birthing/neonatal facilities and private providers in North Carolina. The project will be conducted in cooperation and with the support of parents. The ultimate beneficiaries of the project will be all infants and children in North Carolina.

See Section Seven: Organizational Structure and Facilities for a description of the Early Hearing Detection and Intervention program in North Carolina.

Section Two: Goals and Objectives

Section Three: Description of Program and Methodology

Development of A Web-based Data Tracking and Surveillance System. The present data tracking surveillance system is described in Section One: Understanding the Problem and Current Status. This project will significantly improve the current data tracking surveillance system by designing a secure web-based system where all data is entered at the local level via the Internet, and by integrating existing databases and establish a central expository of demographic data that will be accessed by all collaborators.

During the first year of the grant, a Division of Public Health Data Tracking and Surveillance Task Force will be formed within the Department of Health and Human Services. The role of this task force will be to:

(1) Conduct a statewide assessment of the current capacity of birthing facilities and local private providers to access the Internet for the purpose of submitting and retrieving data.

(2) Identify all the agencies/programs who currently maintain databases and the purpose of those data.

(3) Contract for legal services to provide guidance on complying with HIPAA regulations regarding the collection, reporting and sharing of data from a centralized data source.

(4) Identify programs/agencies who wish to participate in the development of and access a centralized repository of demographic data.

(5) Identify protocols for programs/agencies to interface with a centralized demographic data set.

(6) Develop relationships between state and local agencies for the purpose of establishing protocols for sharing data for case management.

(7) Investigate security issues and strategies to address concerns about transmitting personal data.

(8) Identify data points that needed to support adequate tracking, surveillance, and research related to EHDI. Sources of information will include CDC data points for UNHS, National Center for Hearing Assessment and Management, American Speech and Hearing Association, the Joint Committee on Infant Hearing.

During the first year of the project, the State Lab will develop (1) a centralized repository of demographic data, and (2) a web-based interface for entering diagnostic and amplification selection data at the local level by private providers. To support the implementation of this component, a pilot project will be initiated in several areas across the state, including training of the private providers. An evaluation of the pilot project will help to refine the project and once refined, a statewide training program will be implemented to prepare for statewide implementation during the third year.

During the second year, the State Lab will develop a web-based interface for local data entry of the demographic information and the initial hearing screening results, which will be entered at birthing facilities. This will require the State Lab to redesign the blood spot specimen forms to include unique identifiers that will be matched at the State Lab with the demographic data already entered electronically. This part of the project will be pilot tested during the later part of the third year. Statewide implementation of the web-based interface for hospitals will begin in the fourth year of the grant period. [It is anticipated that the State Center for Health Statistics (State Center), the agency responsible for developing the electronic birth certificate (EBC) program for North Carolina, will be implementing a new EBC web-based software system in Year 2004. In the spirit of this project, every effort will be made to coordinate efforts between the State Lab and the State Center to develop one system that will meet the needs of both agencies.]

The fourth year will include pilot projects to share data with local community agencies for the purpose of case management This part of the project will be contingent on HIPAA regulations and agreements with local agencies to report outcomes to the State for surveillance.

Training. The entire process of the development of a web-based data tracking and surveillance system will be supported by (1) training of pilot sites in preparation for testing components of the system, (2) statewide training sessions to support full deployment of the components and (3) the development and implementation of a web-based training system to provide ongoing training support for the project.

Technical Assistance. The State Lab for Public Health and the Division of Public Health will provide support for the project. The State Lab will provide technical support through the Information Technology Unit staff during the deployment of the system. The Division of Public Health Regional Speech and Hearing Team Consultants will work with birthing facilities and private providers in the establishing protocols and procedures for submitting and retrieving data.

Procurement of Computers. During the fourth year of the grant, birthing/neonatal facilities will be transitioned into a web-based data reporting system. Presently, there are 35 of the 92 birthing/neonatal facilities with computers accessible to the newborn nursery. It is expected that additional facilities will have access to computers by the fourth year of the grant. The purpose in making a limited number of computers available is to assure participation in the web-based data tracking and surveillance system. Computers will be purchased and assigned to birthing facilities for the duration of the project to be used only for the purpose of the NC EHDI Tracking, Research and Integration Project. The computers will be equipped with a handheld scanners which will allow birthing facilities to scan the barcode on the blood spot form, thereby linking the electronically entered demographic data to the blood spot submissions to the State Laboratory for Public Health. See the proposed quote for computer software in Appendix IX. The software and handheld scanner will be an additional cost of approximately $600.00.

Section Four: Collaborative Efforts

The Division of Public Health is the lead agency for Newborn Hearing Screening and the data tracking surveillance system. The Newborn Hearing Screening Program is located in the Women's and Children's Health Section and the Children and Youth Branch, the Title V grantee. The Newborn Hearing Screening Program is one of the programs in the Specialized Services Unit, including the Metabolic Disorders Program.

The Newborn Hearing Screening Program works very closely with the Division of Early Intervention and Education to provide a full program of Early Hearing Detection and Intervention. The Developmental Evaluation Centers (DECs) are located within the Division of Early Intervention and Education. There are 18 DECs across NC providing multi-disciplinary evaluations and therapy to children, birth to three years old. Also, the Division of Early Intervention and Education is developing a new database to capture services provided through the Early Intervention Program to children birth to three years of age. This database is being developed in cooperation with the Department of Public Instruction so that children can be tracked continuously into and through the school years.

Beginning in January 1, 2001, the Newborn Hearing Screening Program established a collaborative relationship with the State Laboratory for Public Health to include the outcomes of Newborn Hearing Screening on the Hearing Screening/Metabolic form that is used to collect and submit the blood spot specimens. The State Lab collects demographic information and blood specimens on over 99% of all infants born in NC. This information is due into the State Lab within five days of the birth of the infant.

The University of North Carolina at Chapel Hill, School of Medicine, Division of Speech and Hearing Sciences (DSHS) has a relationship with the EHDI program. The DSHS collaborates with the EHDI program to provide training for audiologists, pediatricians, ENTs, and family practice physicians in the area of pediatric audiology. There is a critical shortage of pediatric audiologists in North Carolina, as well as, consensus on providing diagnostic audiological evaluations and amplification fittings for infants. Pediatricians tend to err on the side of caution by not recommending follow-up for infants.

The Child Service Coordination Program is located in the Division of Public Health and provides case management for infants referred for rescreen and diagnostic evaluations. The CSCs also encourage families to enroll in the Infant-Toddler Program to receive services through the Early Intervention system.

The Cumberland County Partnership for Children (CCPFC) has a long history with the Newborn Hearing Screening Program in North Carolina. The CCPFC was one of the pilot sites for the implementation of UNHS in North Carolina. The CCPFC has developed a strong evaluation capacity and the capacity to implement and evaluate local models that can be replicated across the state. The Cumberland County area has a very diverse population, including a military community. It ranks as the 4^th most diverse county in the country, has a high-minority infant mortality rate and is the second youngest population in the state. In 1997, PFC's Board of Trustees approved "State of the Child and Family Electronic Community" concept in its strategic plan 1997-99. The Board maintains a belief in the power of technology and public/private partnership to create vehicles through which the proper collection and analysis of data can be used to improve quality and contain costs associated with the service delivery system.

BEGINNINGS for Parents of Children Who are Deaf or Hard of Hearing, Inc., has served families as a non-profit organization, incorporated under the laws of NC since 1987. BEGINNINGS was established to provide emotional support and access to information as a central resource for families with deaf or hard of hearing children, age birth through 21. BEGINNINGS provides an impartial approach to meeting the diverse needs of these families and the professionals who serve them. These services are also available to deaf parents who have hearing children. The mission of BEGINNINGS is to help parents be informed, empowered and supported as they make decisions about their child. In addition, BEGINNINGS is committed to providing technical assistance to professionals who work with these families to help the children achieve full participation in society.

The State Center for Health Statistics is responsible for collecting, analyzing, and disseminating timely, comprehensive, and accurate health statistics. They also administer the state's vital records functions, such as registration of birth certificates. Once analyzed, the anonymized health data becomes available through publications and journal articles, presentations, the web site, and the State Center for Health Statistics information office. Vital Records also computerizes these records to provide statistical data that can help to identify and accurately report health problems. This information is used by policy makers to target public health issues such as infant mortality and communicable diseases and by researchers to identify health risks and effective interventions.

Section Five: Evaluation Plan

During the course of the grant a number of instruments and strategies will be used to evaluate the progress of the activities in meeting the goals and objectives, as well as, the outcomes of the project. (1) The Grant Management Team will meet regularly to monitor the progress of the grant activities. This Team will also be responsible for the project budget and monitoring the outcomes related to the measurable objectives established in the project. Yearly progress reports will be developed and submitted to CDC as well as budget reports on the previous year and budget projections for the coming year. (2) The EHDI 2001 Strategic Plan (See: Appendix V) includes performance measures that will be tracked through data collection and surveillance. (3) There will be a number of surveys distributed and analyzed relating to data collection and the research projects that will provide indications about the perceived benefit of the EHDI program. These will be indicators about the impact on this grant to move the EHDI program forward relating to the goals and objectives as stated in Section Two: Goals and Objectives. These instruments will include, but are not limited to: 1) surveys of hospitals to document procedures and protocols, 2) surveys of audiologists to document the current provision and need to increased capacity to provide pediatric audiological services in North Carolina, and 3) parent and service provider surveys to document involvement and satisfaction with the EHDI program services and to document the benefits to the family of receiving early intervention services.

Additional performance measures that are not included in the EHDI 2001 Strategic Plan include, but are not limited to, the increased number of data points being tracked through the web-based data collection system, the number of databases integrated or related to the central repository of demographic data, and the publications developed as a result of the enhanced data tracking and surveillance system as outlined in the goals and objectives.

Section Six: Staffing and Management System

This project will be housed in the Women's and Children's Health Section of the Division of Public Health, within the North Carolina Department of Health and Human Services. Marshall Tyson, Manager for the Newborn Hearing Screening Program and Supervisor of the Division of Public Health Speech and Hearing RegionalConsultants, is the Project Director and Grant Management Team Leader. Sarah McCracken, a data specialist with the Women's and Children's Health Section, will lead the Division of Public Health Data Tracking and Surveillance Task Force. Sheila Jones, Information Systems Manager, State Laboratory for Public Health, will supervise the development of the information system necessary to support the grant activities. Jim Hawley is Information Technology Specialist for Early Intervention and is coordinating the development of the Early Intervention Database. Linda Blanton, Cumberland County Partnership for Children, will be coordinating local pilot projects in Cumberland County area and projects to coordinate local case management based on an integrated statewide database. Todd Houston, University of North Carolina at Chapel Hill, Division of Speech and Hearing Sciences, will be collaborating with the Division of Public Health to identify data points related to newborn hearing screening and identification of late onset hearing loss in children. The Division of Public Health Speech and Hearing Regional Consultants will provide technical assistance to birthing/neonatal facilities and private providers regarding the collection and reporting of data related to early hearing detection and intervention. The Division of Public Health also has two positions (data entry and data processing) that will be dedicating time to Early Hearing Detection and Intervention Data Tracking and Surveillance activities. The following table lists Division of Public Health staff and the in-kind contribution from each position.

* In-kind, non-Federal funds.

The EHDI Grant Management Team will include, but not be limited, to the principle collaborates for this project.

EHDI Grant Management Team

Marshall Tyson, Team Leader, Division of Public Health

John Sexton, Contract Audiologist, Division of Early Intervention and Education

Linda Blanton, Cumberland County Partnership for Children

Sheila Jones, State Laboratory for Public Health

Todd Houston, University of North Carolina at Chapel Hill, School of Medicine, Division of Speech and Hearing Sciences

Jim Hawley, Division of Early Intervention and Education

Steven Knesovich, Contract Programmer, State Laboratory for Public Health

Sarah McCracken, Data Specialist, Division of Public Health

Biographical sketches are located in Appendix IV.

Section Seven: Organization Structure and Facilities

North Carolina's Early Hearing Detection and Intervention Program is a collaborative effort of the Division of Public Health (DPH) and the Division of Early Intervention and Education (DEIE), with oversight by the NC Department of Health and Human Services (DHHS) Assistant Secretary for Human Services. The Division of Public Health is the lead agency for the newborn hearing screening and data tracking/surveillance components of the Universal Newborn Hearing Screening (UNHS) Program. The UNHS program is located in the Women's and Children's Health Section of the Division of Public Health which is the State Title V CSHCN grantee.

The Division of Public Health has established Regional Speech and Hearing Team Consultants, whose primary focus is to provide statewide consultation and technical support to the Newborn Hearing Screening Program, including the data tracking and surveillance components. Each of the DPH Speech and Hearing Teams Consultants have AABR screeners, DPOAE screeners with tympanometry and otoscopes, enabling them to screen infants and young children for hearing loss at birth or late onset/progressive hearing loss. The Team is comprised of audiologists and speech-language pathologists. The audiologists work primarily with the 92 birthing/neonatal facilities across the state in establishing and maintaining their newborn hearing screening programs. The speech-language pathologists have established hearing screening sites across the state in local health departments and provide hearing screenings for infants who were missed at the birthing facilities, or who failed their initial hearing screen and need to be rescreened before being referred for a diagnostic evaluation. (See Appendix I) The Division of Public Health has also hired a program manager to implement the Universal Newborn Hearing Screening Program and to supervise the work of the DPH Speech and Hearing Team Consultants.

The Division of Early Intervention and Education is the lead agency for diagnostic evaluation and early intervention services. These services are provided through a network of 18 regional Developmental Evaluation Centers across North Carolina. Each center is staffed by an audiologist and has a battery of devices (DPOAE with tympanometry, middle ear analyzer equipment, sound booths, diagnostic ABRs, sound field speaker system, real ear measurement/hearing aid analyzers, visual reinforcement audiometry systems, and two-channel clinical diagnostic audiometers) necessary to provide a complete diagnostic evaluation and amplification fitting.

The Division of Early Intervention and Education is responsible for identification of certain children with special needs, providing early intervention services, and education of these children and their families. Specifically, the Division administers programs providing evaluation, family-centered intervention, specialized therapies, and education for all special needs children birth to age three. This includes children with mental or physical delays, autism, visual impairments, or hearing impairments. Although the priority for service provision is that of children below the age of three, the Division provides diagnostic and therapeutic interventions beyond that age. The goal is to serve a greater number of eligible children, reduce waiting lists for children to receive evaluations and services, and offer a full complement of services using family-centered approaches in natural environments. An active program of early services, birth to five, for children who are hearing impaired or visually impaired is a cornerstone of early intervention. Currently, a major goal is to implement service provision for infants who have been identified with permanent hearing loss by six months of age as best practice dictates. This priority is a result of recent enactment of universal newborn hearing screening legislation.

Guidance for program implementation is provided by the Early Hearing Detection and Intervention Workgroup, a subcommittee of the Early Intervention Management Team that includes representatives from the DHHS Divisions that provide intervention services for children ages birth to three with, or at risk for, a developmental delay/disability, chronic illness, or social-emotional disorder; and other state agencies who provide services for this population group. In addition, the DHHS Early Hearing Detection and Intervention Advisory Committee (See Appendix VI) was formed to address issues such as reimbursement to providers through Medicaid and private insurance for the cost of hearing screenings, make recommendations about rules and regulations for EHDI, develop a public awareness campaign, and advise on policy issues.

The Division of Public Health, with the recommendation of the DPH Hearing Screening Advisory Committee, has provided AABR screening devices to 73 of the 92 birthing facilities to assure that all facilities have the equipment necessary to perform newborn hearing screenings. All facilities have equipment and protocols in place for completion of the screening prior to discharge (See Appendix X) and staff have been trained in use of the equipment, program protocols, and data reporting procedures. Each facility reports the results of the screening to the State Laboratory for Public Health along with required newborn metabolic screening results. The hearing screening results are recorded as part of the State Lab data collection process. The information is downloaded to the Division of Public Health UNHS Database for tracking infants and monitoring program performance.

The State Laboratory for Public Health includes the Metabolic/Newborn Screen Data Unit. It is there that newborn hearing screening, diagnostic audiological evaluation and amplification selection form are sent for entry into the data collection system. There are five data entry support positions and a Unit Supervisor. Once the data is input, demographic and outcomes are downloaded via the internet into the Division of Public Health Newborn Hearing Screening database.

The Division of Public Health oversees the Child Service Coordination (CSC) Program. CSCs in local health departments are notified when an infant fails a hearing screening and provide a valuable link between the State EHDI Program and the families. They have been designated to assist families of infants with suspected hearing loss to facilitate the follow-up screen and report to the State where that appointment has been made. CSCs also work with families to assure that all families of infants with hearing loss know about and can access all available, appropriate services and enroll them in the State's early intervention program.

Infants that fail the screening process (two failed screenings) are immediately referred for diagnostic services. These services are available statewide through the DEIE network of 18 Developmental Evaluation Centers, each serving four to seven counties, depending on population. Families can also receive diagnostic services by qualified pediatric audiologists. Where appropriate, infants are referred for amplification selection and other follow-up services. Results of these services are reported to the Division of Public Health for inclusion in the UNHS program database for infant tracking and follow up.

North Carolina law requires that all children with confirmed hearing loss be referred to BEGINNINGS for Parents With Deaf or Hard of Hearing Children, Inc (a.k.a. BEGINNINGS). BEGINNINGS is a statewide network for family support and advocacy services. The Division of Public Health has contracted with BEGINNINGS to provide a Hispanic parent educator for the eastern half of the state. BEGINNINGS has also hired a Hispanic parent education to cover the western half of the state.

Section Seven: Human Subjects Review

N/A