Illinois CDC EHDI GRANT (2001)

GRANT ABSTRACT

GRANT NARRATIVE

A. UNDERSTANDING THE PROBLEM AND CURRENT STATUS

Illinois is a large and highly diverse state with one of the largest metropolitan areas in the country, the city Chicago, as well as many isolated rural areas. The total population for the state rose to 12,419,293 in the year 2000. Sixty-seven percent of the population is Caucasian, 15% African American, 12% Hispanic/Latino, 6% other races including Asian, American Indian, and Alaskan native. Approximately 185,000 infants are born in Illinois each year.

According to current estimates, permanent congenital hearing loss of greater than 25dB HL (hearing level) in the poorer ear is present in at least three infants per thousand (White 1997). Given Illinois birth rates, approximately 500 infants will be born each year with significant hearing loss. Research conducted by Yoshinaga-Itano (1995) indicates children identified with hearing loss who are linked to appropriate intervention by 6 months of age can develop normal language skills. A 1995 study by Kittrell and Arjmand revealed that in Illinois the average age of identification of hearing loss was 20.2 months and the average age of initial amplification was 31.7 months. We must dramatically alter these statistics by screening all newborns for hearing loss, identifying hearing loss early, and tracking through diagnosis and early intervention. With recent advances in screening and tracking technologies, it is now feasible to meet this goal.

Legislation and State Agency Responsibilities

The Illinois Hearing Screening for Newborns Act (Appendix A) was passed as an unfunded mandate with an effective date of December 31, 2002. At that time, all birthing facilities in Illinois must provide hearing screening of each newborn prior to discharge. To implement this legislation, the Illinois Department of Human Services (DHS) was required, by July 1, 2000, to "organize an advisory committee" to advise in the promulgation of rules and implementation of Universal Newborn Hearing Screening (UNHS). This committee, by mandate, includes representatives from DHS, the Illinois Department of Public Health (IDPH) and the University of Illinois at Chicago - Division of Specialized Care for Children (DSCC) along with representation from audiology, medicine and the deaf/hard of hearing community.

DHS, who also administers the Maternal and Child Health Bureau (MCHB) grant for Early Hearing Detection and Intervention (EHDI), is charged with the overall administration of the Hearing Screening for Newborns Act, development of the Advisory Committee and promulgation of rules. IDPH is charged with collecting information on each child with a positive hearing screening result and maintaining a registry of confirmed cases, including information needed for the purposes of follow-up. DSCC, along with DHS through the Part C Early Intervention (EI) program, holds responsibility for assuring outcomes through the provision of early intervention services, hearing instruments, and case management. The coordinated efforts of IDPH, DHS, and DSCC are required to make the program effective in assuring early identification and intervention to meet the needs of infants with hearing loss and their families.

Screening

Based on a DHS year 2000 hospital survey (Appendix B), at least 118 (70%) of birthing hospitals are screening newborns for hearing loss. These hospitals account for approximately 88% of Illinois births. To implement UNHS, Illinois faces significant challenges. First, screening must be initiated by approximately 48 more hospitals by December 31, 2002, to achieve universal screening in all birthing facilities. Second, reporting practices must be improved among the 112 hospitals that have already initiated newborn hearing screening. Despite the considerable number of babies currently believed to be screened in Illinois (88%), monthly numeric data received by IDPH (Table , below) for the first quarter of 2001, only accounts for screening of approximately 38% of infants.

TABLE 1

Diagnostic Services

In an attempt to identify availability of appropriate diagnostic follow-up services, surveys were distributed to all licensed audiologists in Illinois. The surveys determined that there are 146 who work with infants and young children who also have the capacity to perform both OAE and ABR diagnostic testing and 25 more who have only ABR capability. While audiologists are located throughout the state, there is limited access to diagnostic and therapeutic services in rural areas. In an attempt to overcome this access problem in rural areas, a coalition of audiologists was formed to address the rural availability of diagnostic services. A cooperative effort between medical practitioners, audiologists, and the Southern Illinois University School of Medicine has been established to explore the possibility of a centralized clinic for audiological follow-up.

Training regarding UNHS reporting to IDPH has taken place through regional workshops for audiologists and the Illinois Academy of Audiologists and Illinois Speech Language Hearing Association annual conferences. Diagnostic follow-up forms and instructions were mailed to all graduate programs in audiology in Illinois to assure that reporting requirements for UNHS are incorporated into academic programs. Currently, over half of the audiologists who indicated they were able to complete diagnostic testing for infants are reporting data to IDPH.

Early Intervention

Referral for Early Intervention services, by federal mandate, should initially be made by the physician or audiologist within 48 hours of diagnosis. Early intervention services in Illinois are administered through the DHS, Part C, Early Intervention program. Part C, EI services are available statewide through a network of enrolled providers. EI services include assistive technology, audiology, aural rehabilitation, developmental therapy, medical services for diagnostic and evaluation purposes, services coordination, and speech and language therapy among others. Family training and support for children with hearing or vision loss is provided through Hearing and Vision Connections (HV Connections - Appendix C), and EI funded program. The goal of HV Connections is to assure that all children, birth to three, who are deaf, hard of hearing, or visually impaired, receive appropriate EI services. Developmental evaluation, assessment, Individualized Family Service Plan (IFSP) development and service coordination are available at no cost to families. Ongoing EI services are authorized and provided in accordance with the eligible child's IFSP in the most natural setting for the child and family.

DSCC, the Illinois Title V CSHCN Program, provides financial assistance for treatment including otolaryngology examinations to develop a medical treatment plan, audiometric testing for treatment of the hearing loss, hearing aids, supplies and surgical procedures. Once a hearing loss is identified and the referral made to DSCC, the infant's parents are contacted by DSCC staff to offer assistance with care coordination, and to provide an application to the Institute for Parents of Preschoolers Who are Deaf (Appendix D). Pre-authorization from DSCC is required for ongoing audiological services and provision of hearing aids for financially eligible families.

Protocol for Referral and Informed Consent

Rules and regulations regarding UNHS are currently being drafted. Hospitals will be required to provide screening and, as appropriate, rescreening prior to discharge. The rules establish minimum requirements and delineate follow-up responsibilities of hospitals regarding family, physician, and IDPH notification. Hospitals will be provided with the Illinois Universal Newborn Hearing Screening brochure (Appendix H) which explains UNHS and directs the parent in obtaining diagnostic testing. The rules state that, upon referral, IDPH is responsible for tracking and follow-up efforts. IDPH policies and procedures can be found in Appendix E.

Hospitals will be required to provide written information that includes procedures used for hearing screening, limitations of screening procedures and results of the hearing screening to all parents giving birth in or transferred to their facility. Parents can decline the screening on the grounds that it conflicts with religious beliefs or practices by providing a written objection to the physician or person whose objective it is to obtain the screening. All hospitals are required to provide information about newborn hearing screening to the parent/guardian considering refusal that includes purposes and benefits of newborn hearing screening, indications of hearing loss, what to do if a hearing loss is suspected and procedures used for hearing screening.

Due to the multitude of potential payees for diagnostic testing and requirements for preapproval or use of network providers, hospitals are not required to instruct families where to go for diagnostic audiological testing. Notification letters to the parents and physicians from IDPH will contain the UNHS brochure (Appendix H) which delineates how to obtain further testing and telephone contact numbers for parents who need additional assistance.

Tracking and Data Management

One of the challenges facing Illinois' UNHS program is the relatively low reporting rate by birthing hospitals (approximately 27% of the newborns who were screened in FY 2000 were reported, in aggregate form, to IDPH). For 10 years, IDPH has operated a comprehensive tracking and follow-up system, GENSYS, for conditions identified through the Newborn Genetic and Metabolic Screening Program. In 1999, GENSYS was modified to incorporate basic Early Hearing Detection and Intervention (EHDI) data fields through which data from hospitals, in paper reporting format, is entered manually by IDPH staff. Since UNHS reporting is currently done by the hospitals on paper forms, only positive and missed screenings are being reported for individual children. Monthly aggregate data on infants screened, rescreened and referred is also submitted from the hospitals in paper format. This aggregate data often lacks consistency of interpretation and submission. The current paper-based reporting and follow-up system is inadequate for tracking and maintaining data on approximately 185,000 births annually.

Illinois' strength is in its experience with administration of the genetic and metabolic screening through the GENSYS system and a system for monitoring follow-up activities through the DHS CORNERSTONE system. CORNERSTONE is Illinois' Maternal and Child Health (MCH) electronic statewide management information system. CORNERSTONE collects demographic information, supports case management, collects information on service delivery, and supports the special Supplemental Nutrition Program for Women, Infants and Children (WIC). CORNERSTONE has been modified to support the Part C, EI System by automating the Individualized Family Services Plan (IFSP) and the authorization and tracking of services specified in the IFSP. Due to this integrated system, developmental progress and service utilization data on every infant with hearing loss who qualifies for the EI program will be available for further analysis.

The gap between the limitations of the GENSYS system for tracking newborn hearing screening and assuring compliance, and the EI services monitoring of the CORNERSTONE system needs to be closed. To help resolve data collection problems and close this gap, IDPH has committed funding for use of the HI*TRACK Newborn Hearing Screening Data Management and Tracking System from the National Center for Hearing Assessment and Management (NCHAM), Utah State University. Beginning in July 2001, HI*TRACK management and reporting software will be supplied by IDPH to birthing facilities throughout the state and will allow hospitals to report screening data electronically. It will also be used for centralized, statewide program management of tracking and follow-up activities through the generation of physician and parent letters, monitoring of tracking activities, data management, report generation, and program evaluation. The GENSYS and HI*TRACK systems will be run in tandem until data conversion can take place. More timely data collection will improve the IDPH tracking and follow-up process, as established in the Department Policies and Procedures regarding UNHS follow-up (Appendix E) to assure timely identification and early intervention.

Funding Needs

DHS has helped cover the initial startup cost for one contractual staff person to do follow-up on infants screened. IDPH has funds committed to purchase the HI*TRACK software. Funds are being solicited through the CDC Cooperative Agreement for a program coordinator, additional support staff and supplies necessary for timely and effective UNHS implementation and integration. Financial resources are also needed for outreach, training, and technical support activities for implementation of UNHS at birthing facilities throughout the state. By providing funds to support UNHS training efforts, implementation, and staffing needs, CDC will be assisting in building a sustainable infrastructure on which IDPH can continue its commitment to high quality UNHS follow-up and technical support to hospitals and families.

B. GOALS AND OBJECTIVES

Goals of Illinois' UNHS Program are consistent with those of "Health People 2010" and MCHB "National Agenda for CSHCN: Measuring Success." Goals of the project are to implement a sustainable Illinois Project for Newborn Hearing Screening Tracking and Follow-Up.

• All newborns in Illinois will be screened for hearing loss and hearing screening outcomes will be reported to IDPH as part of a comprehensive tracking and data management system.
  Objective 1: By January 2002, 60 birthing hospitals/facilities will be reporting UNHS data to IDPH electronically.
  Objective 2: By January 2002, an EHDI data management system will be implemented at IDPH for tracking and follow-up purposes.
  Objective 3: By December 2002, all 160 birthing facilities will have fully implemented UNHS programs with provisions to screen infants born outside the hospital and will be reporting UNHS data to IDPH electronically.
  Objective 4: By January 2003, IDPH and DHS will assure that 95% of infants receive screening prior to hospital discharge or before 1 month of age.

• Infants referred from UNHS programs will receive audiological follow-up by 3 months of age. Diagnostic data will be recorded in the IDPH HI*TRACK database.
  Objective 1: By January 2002, the IDPH diagnostic follow-up form will be available online and audiologists will be able to report screening results to IDPH through the use of HI*TRACK, email submission of reports, or paper submission of reports to IDPH.
  Objective 2: By December 2002, IDPH will have a working registry of children with confirmed hearing loss and those "at risk" of acquired or progressive hearing loss.
  Objective 3: By June 2003, IDPH, DHS, and DSCC will assure that 95% of infants with a suspected hearing loss receive a diagnostic examination by three months of age.

• Infants found to have hearing loss will be enrolled in Early Intervention programs by 6 months of age with enrollment data reported to IDPH.
  Objective 1: By July 2003, data from the IDPH confirmed hearing loss list will be cross-checked quarterly with the DHS CORNERSTONE system, the CSHCN enrolled list, and the Hearing and Vision Connections enrolled list.
  Objective 2: By June 30, 2003, IDPH, DHS, and DSCC will assure that 95% of eligible infants with confirmed hearing loss are enrolled in Early Intervention and CSHCN program services as appropriate.

• All infants will receive screening and follow up services without respect to ethnicity or gender; women and individuals from diverse ethnic and/or racial groups will be included in all aspects of the planning and delivery of services.
  Objective 1: Early intervention enrollment will be reviewed to assure that follow-up services are being provided without regard to race and/or ethnicity.
  Objective 2: All brochures and form letters developed for parents will be produced in both English and Spanish.
  Objective 3: The Advisory Committee will reflect ethnic and gender diversity.

• UNHS will be included in the Illinois Consolidated Birth Record Project data integration initiative and will also contribute to CDC data collection efforts.
  Objective 1: Data fields to be collected are in line with CDC's suggested National Database to enable reporting per CDC guidelines and requirements.
  Objective 2: Data will be collected including sufficient unique characteristics to assure adequate matching across databases.
  Objective 3: A UNHS program representative will sit on the committee for the IDPH Coordinated Birth Record Data Project.

C. DESCRIPTION OF PROGRAM AND METHODOLOGY

To achieve the goals and objectives described, an action plan will be implemented that -

• involves implementing the HI*TRACK Newborn Hearing Screening Data Management and Tracking System into hospitals and at the state level
• provides extensive training and support to hospital-based personnel
• implements centralized, statewide tracking and follow-up through the system to assure appropriate diagnostic testing, referral for EI and DSCC services
• enables program management and evaluation activities.

HI*TRACK implementation efforts will be undertaken in collaboration with activities being carried out as part of the current UNHS project funded by MCHB through DHS.

Goal 1: All newborns in Illinois will be screened for hearing loss and hearing screening outcomes will be reported to IDPH as part of a comprehensive tracking and data management system.

To achieve this goal, HI*TRACK Newborn Hearing Screening Data Management and Tracking System software will be introduced into Illinois hospitals statewide at no cost to the hospitals. HI*TRACK is a commercially available tracking system, specifically designed for EHDI programs, which is already being used successfully by state programs in Hawaii, Utah, Arizona and in at least 6 birthing hospitals, large and small, in Illinois. This software is available through the National Center for Hearing Assessment and Management (NCHAM) which also provides extensive technical assistance to hospital and state users through on-site visits and a telephone accessible Help Desk. HI*TRACK was selected for the following reasons -

• Ability to run on both low and high end computers using DOS, Windows, or Windows NT operating systems
• Compatibility with all available screening equipment software allowing data to be downloaded directly from screening equipment (e.g. Natus, Biologic, SonaMed, Otodynamics, etc.) into the HI*TRACK database
• Automatic letter generation feature produces standard letters notifying physicians and parents of screening outcomes in English or Spanish (12% of families in Illinois are Hispanic)
• Reporting capability provides "tickler" or reminder lists of infants needing to return for outpatient screening or diagnostic evaluation, aggregate data on the number of infants screened, missed, referred for and receiving diagnostic evaluation, and quality assurance monitoring on hospital program and individual screener performance
• Extensive data entry fields allow demographic data, risk indicators, diagnostic data, amplification, and early intervention service information to be entered
• Automatic transfer of new and updated infant records to the State via files encrypted to protect confidentiality
• Compatible with CDC National Database requirements and capable of transferring State records, stripped of personal identifiers, to a national database.

Data entered into and downloaded from the screening software will populate the HI*TRACK database, thus eliminating double data entry and minimizing human data entry error. Records in the hospital HI*TRACK database can be checked against hospital Vital Statistic records to ensure that all babies are being entered into the system and screened. Letters can be generated to parents/physicians to inform them that the baby either passed the hearing screening or is in need of further testing. Demographic data, screening results, and follow-up data entered into infant records are then forwarded to the State via encrypted files on a regular basis.

The three state agencies administering the Act will be responsible for the EHDI program implementation in Illinois. Through the MCHB grant to DHS, training will be provided to hospitals, physicians, audiologists, and intervention agencies in program implementation, screening equipment selection and testing protocols, reporting responsibilities, tracking and follow-up activities, and state requirements. Supported by funding requested from CDC, IDPH will be responsible for all aspects of statewide data collection and program monitoring including HI*TRACK implementation in all birthing facilities. IDPH, in conjunction with NCHAM, will present three training workshops (two in Chicago/one in Springfield) to the first group of approximately 60 hospitals that have been reporting to IDPH in paper format and who will transition to the IDPH HI*TRACK system. NCHAM will provide further instruction to IDPH administrative and field staff in a train-the-trainer format. This will enable IDPH staff to provide additional HI*TRACK training to the remaining hospitals throughout the state and to support all facilities through on-site consultation. To assist IDPH in statewide monitoring and tracking efforts, NCHAM will also instruct IDPH staff on advanced features in HI*TRACK that will allow IDPH staff to assess hospital and state program performance and follow-up with individual families. NCHAM will provide continued technical assistance to hospitals and IDPH throughout the term of the contract. The HI*TRACK implementation plan is defined in Appendix F.

A centralized, statewide surveillance and data tracking system to assure minimal loss to follow-up will also be implemented using the state HI*TRACK module. This extension of the software merges data from the hospitals, matches and updates existing records and/or creating new records. It produces lists of infants who have not returned for follow-up screening or audiological diagnosis. The system can also create aggregate reports, by hospital and entire state, on numbers of infants screened, rescreened, missed, etc. Quality assurance reports can be generated to confirm screening of all infants and to assure appropriate referral rates based on standardized national data. Program reports defining age of diagnosis, age of hearing instrument fitting, age of intervention, and pockets of high incidences of hearing loss and/or loss to follow-up can be evaluated to assure consistency in overall program performance. Data on children outside the hospital screening system will be entered into the HI*TRACK system manually at the state or hospital level (which will automatically update the state database) to allow for further monitoring and notification for annual evaluations. Home births can also be entered manually. Education of nurse midwives in the importance of newborn hearing screening and the methods for obtaining screening for home births will be the initial means of reaching these infants and families. Ultimate coordination of data systems with Vital Records will assure that outside of the hospital birth families receive notification of the need for a newborn hearing screening.

Goal 2: Infants referred from hearing screening will receive audiological follow-up by 3 months of age. Diagnostic data will be recorded in IDPH HI*TRACK.

As part of the MCHB grant, the state level project team will provide technical and programmatic assistance workshops for hospitals in the initiation and maintenance of an EHDI program. To assure timely referral and diagnosis as each hospital receives HI*TRACK software, a contact person at the hospital will be identified. The hospital will agree to report to IDPH on a specific day each week by either e-mail attachment or disk submission in regular US Mail. If the data is not received by the state on the day expected (by next day for e-mail attachments - 4 days for US Mail submission), the contact person at the hospital will be notified by phone.

The Illinois UNHS tracking and follow-up program is designed for planned overlap. In addition to hospitals issuing letters and information, IDPH will also notify parents and physicians when a child is referred and in need of further testing. This two level system will assure that caretakers are informed and have access to resources for further testing. The state agencies involved in UNHS have collaboratively developed a brochure (Appendix H) for physicians and families to guide them through the diagnostic testing process. This brochure will be included with every notification letter sent by IDPH following a UNHS referral. Infants will be followed through diagnostic testing by means of a "tickler" list and additional letters and phone calls to the hospitals, physicians, audiologists and parents. Ultimately, for those families difficult to locate or non-compliant, the assistance of the local health department will be requested. Utilizing CORNERSTONE at the local health department, many infants can be located through WIC clinics, well baby and immunization clinics, or through a home visit by the family case management (FCM) nurse who makes APORS (Adverse Pregnancy Outcome Reporting System) visits to families. Although hearing loss is not currently an APORS reportable condition, FCM is facilitated through grants to local health departments from DHS, Office of Family Health, which also holds overall responsibility for implementation of the Illinois UNHS program. A draft of IDPH policies and procedures for UNHS follow-up can be found in Appendix E.

As required in the proposed Rules and Regulations for administering the Act (Appendix I), audiologists/diagnosticians and physicians will be required to submit hearing screening follow-up data to IDPH within 30 days of completing a diagnostic evaluation regardless of the screening/diagnostic outcome. Audiologists working within hospital settings will be able to record diagnostic information directly in the infant's HI*TRACK record, thus linking it with the screening data and automatically updating the state HI*TRACK record as well. For audiologists working outside a hospital system a diagnostic follow-up form, available on-line or from IDPH, can be submitted to IDPH by e-mail attachment or in a paper format by Fax or regular mail. A series of continuing education offerings and independent training have been provided to hospitals and audiologists throughout the state to make them aware of the process and the significant part they play in timely diagnosis of hearing loss and the requirements for notification of IDPH.

Epidemiological and bio-statistical activities, supported by the IDPH HI*TRACK system, will allow for assessment of incidence data looking for unusual patterns, areas of increased incidence and evaluation of rural access to services. Following the first quarter of calendar year 2002, quarterly reports will be generated by IDPH based on age of diagnosis. The reports will be shared with DSCC, DHS, and the Advisory Committee to target areas in need of further training or technical assistance. Upon evaluation of the reports, FCM, DSCC, and EI/CFC follow-up staff in counties showing the highest percentage of infants with delayed diagnosis will receive further training in working with families to assure timely, completed follow-up.

Without a solid EHDI data management system, it would not be possible to determine whether children identified with hearing loss after infancy truly represent late-onset losses or if they were simply not identified with congenital loss in a timely manner. By using a data system that starts with tracking the infant screening, late identification can be reliably documented based on the foundation of the initial screening. With data submitted from the UNHS programs and follow-up diagnostic reports, IDPH will establish a registry of infants with confirmed hearing loss and those at risk of acquired or progressive hearing loss. Utilizing the tickler list of children in the registry, IDPH, through HI*TRACK, will generate letters for parents and physicians recommending annual monitoring of the child's hearing.

Goal 3: Infants found to have hearing loss will be enrolled in Early Intervention programs by 6 months of age and enrollment data reported to IDPH.

IDPH will assure that all infants with reported, confirmed hearing loss are referred for DSCC and EI services by direct telephone contact with DSCC and the EI/CFC within 24 hours of receiving the diagnostic report. Once a hearing loss is identified and referral is made to DSCC, the infant's parents are contacted by DSCC staff to offer assistance with coordination of diagnostic services and care, provide an application to the Institute for Parents of Preschoolers Who are Deaf (Appendix D), and, if eligible, financial assistance for medical services and hearing instruments. Part C Early Intervention services are available through a network of credentialed providers. Through intake at one of numerous Children and Family Connections (CFC) offices throughout the state, enrollment in Early Intervention Services will be initiated.

Quarterly cross checks of the IDPH confirmed registry, the DHS CORNERSTONE system which includes EI and Hearing and Vision Connections enrollment lists, and the DSCC (CSHCN) enrollment lists will be initiated by July 2003 through the generation of registry and enrollment lists from the individual agency databases. Corrective measures will be taken through DHS, DSCC, IDPH, and the Advisory Committee based on the outcome of the cross check to assure that all eligible infants have access to services.

Goal 4: All infants will receive screening and follow-up services without respect to ethnicity or gender; women and individuals from diverse ethnic and/or racial groups will be included in all aspects of the planning and delivery of services.

The UNHS program is all inclusive and seeks to ensure that all infants are screened and that those with confirmed hearing loss are linked with services regardless of their gender or racial/ethnic background. All UNHS brochures currently in use or in development will be produced in both English and Spanish. Form letters can be generated in both English and Spanish through the HI*TRACK system. Written communications will be provided to families in their native language whenever possible through utilization of IDPH resources for translation.

The Advisory Committee reflects gender and ethnic diversity being composed of 74% women, 9% black, and at least one member of mixed heritage including American Indian. The Advisory Committee aims to continue cultural diversity amongst its members.

Goal 5: UNHS will be included in the Illinois Consolidated Birth Record Project data integration initiative and will also contribute to CDC data collection efforts.

Illinois faces an additional challenge in implementing a fully integrated, electronic system which consolidates the reporting and management requirements of newborn hearing screening, genetic and metabolic screening, electronic birth certificates, immunizations, and lead screening. Illinois have appropriated $1.1 million in FY '02 to fund the Consolidated Birth Record Data Management Project (Appendix G). This project brings together representatives of the IDPH programs which collect newborn data to study the feasibility and requirements of an integrated data management system that would include newborn hearing screening as well as genetic and metabolic screening, electronic birth certificate registry, APORS, immunizations and others.

While the Consolidated Birth Record Project will be spearheaded by Kevin Rademacker, IDPH Information Technology Chief, a UNHS program representative will participate as a committee member and IDPH HI*TRACK will be included in the broader data integration efforts. HI*TRACK was selected for UNHS data management because its standardized database format will facilitate a wide range of data integration efforts and will allow it to dovetail into a comprehensive data management system. In preparation for data integration efforts to begin in 2002, UNHS staff will engage in preliminary discussions with the project team to discuss the variables for each infant that needs to be collected in the IDPH HI*TRACK to facilitate record matching across databases while limiting the amount of manual data input that must be done. UNHS staff will then work with hospitals as they begin using the system to ensure that the collection of data meets the Consolidated Birth Record Project's recommendations. Data collection activities at the hospital and state level will be carried out in accordance with CDC data fields and guidelines to allow aggregate data to be reported to CDC. In addition, the standard format in which UNHS records are stored will allow data from IDPH HI*TRACK to be sent to CDC, stripped of personal identifiers, to contribute to a national database.

D. COLLABORATIVE EFFORTS

Illinois' UNHS program is a collaborative effort of IDPH, DHS, DSCC, and the state appointed Advisory Committee. The role of each partner agency is described below.

The Act charges IDPH with collecting information on each child with a positive hearing screening result and maintaining a registry of confirmed cases, including information needed for follow-up. IDPH will play an essential role in not only data collection but also in analysis, referral, tracking and follow-up, and dissemination of data to other state agency partners for evaluation of individual and statewide UNHS programs. Illinois will utilize the NCHAM website State Pages for posting current data related to the state EHDI program. This link is already in place through NCHAM and will be used for posting and updating information on the implementation efforts in Illinois

The DHS, Office of Family Health, is the recipient of the MCH Block Grant under Title V of the Social Security Act an dis responsible for MCH Programs, including a UNHS grant from HRSA/MCHB (Appendix J) through which the state agencies involved in UNHS activities collaborate. DHS is responsible for EI Services (Part C of the Individuals with Disabilities Act).

The Office of Family Health is also responsible for grants to local health departments for the provision of Family Case Management (FCM). FCM staff (often public health nurses) assist with follow-up, referral for diagnostic testing and referral to DSCC and EI services. FCM is supported by the CORNERSTONE management information system, that collects demographic, health status and service utilization data. Further explanation of CORNERSTONE can be found on page 6. Since many infants with either suspected or confirmed hearing loss may qualify for a

variety of local health department programs, those families who are difficult to locate or non-compliant in accessing diagnostic testing may be tracked through CORNERSTONE and FCM.

DSCC administers the state's program for Children with Special Health Care Needs (CSHCN) authorized by Title V of the Social Security Act. The agency's mission is to provide, promote and coordinate family-centered, community-based, culturally competent care for eligible children. DSCC provides diagnostic and treatment services for children who are disabled or have a condition which may lead to disability. Children with hearing loss are among those served.

The Advisory Committee began meeting in February of 2000 and continues to meet. The Committee established sub-committees to address the issues of standards, training and education, and reimbursement. The Advisory Committee is co-chaired by Stephen Saunders, M.D., the Title V Director at DHS, and Dianne Meyer, Ph.D., President of the Illinois Speech, Language and Hearing Association (ISHA) and director of audiology programs at Rush Presbyterian Hospital and Rush University in Chicago. The composition of the Advisory Committee exceeds the requirements of the Hearing Screening for Newborns Act. While representatives of the three state agencies (IDPH, DHS, and DSCC) make up the state level project team, they work closely with the statewide advisory committee to plan, implement and evaluate Illinois' UNHS program. A list of committee members and their affiliations is included as Appendix K.

With the UNHS mandate in Illinois involving the requirement that three state agencies administer the Act, the MCHB grant, held by DHS, requires collaboration in the activities required to build a statewide program. DHS, IDPH, and DSCC have a long history of joint efforts which continue with EHDI and the proposed goals of the CDC Cooperative Agreement.

E. EVALUATION PLAN

The ultimate measure of an EHDI program lies with the assurance that all infants are appropriately screened, diagnosis is completed by 3 months of age, and infants with eligible losses are enrolled in EI/DSCC. HI*TRACK will allow for quarterly analysis by both outcome and process evaluation methods. Reports will be supplied to the Advisory Committee and the state level project team for identification of obstacles which are interfering with the successful achievement of goals and objectives. Solutions will be discussed, planned and time lines adjusted as necessary. Ancillary goals, objectives, and program efforts will be revised based on the outcome of the measures indicated in TABLE 2.

TABLE 2

F. STAFFING AND MANAGEMENT SYSTEM

The Illinois Project for Newborn Hearing Screening Tracking and Follow-Up will be overseen by a State-Level Project Team comprised of staff (listed below) from the collaborating State agencies. Tracking and follow-up activities will be housed withing the Vision and Hearing Program at IDPH, 535 West Jefferson, Springfield, Illinois, with additional support from regional vision and hearing consultants (audiologists) located in IDPH offices throughout the State.

• Gail Tanner, Administrator of the IDPH Vision and Hearing Programs, is a licensed audiologist. She has more than 20 years of experience, including clinical, hearing aids, teaching and public health. She has been responsible for the tracking, follow-up and data management portions of UNHS since the state first began collecting data in July 1999.
• Michael Larson, Chief of DHS' Bureau of Family Nutrition, is also a licensed audiologist with more than 30 years of experience at the state level, including 17 years as the former Administrator of the State's Vision and Hearing Screening Program.
• Gerri Clark, DSCC's Associate Director for Program Services, brings nearly 30 years of professional experience to the program, including 20 years in hospital, public health, home health and school nursing, and 10 years in CSHCN programs in Nebraska and Illinois.

Resumes of the State-Level Project Team are included in Appendix L.

The tracking and follow-up portion of UNHS will be directed by the Vision and Hearing Programs Administrator in the Springfield central offices of IDPH. Four audiologists are employed as regional Vision and Hearing Consultants providing training, education, clinical, and consultative services to schools, health departments and other programs throughout the state. The role of the regional Vision and Hearing Consultants will be expanded to incorporate on-site hospital consultation and follow-up training for UNHS. A UNHS Program Coordinator position, an audiologist, will be employed through the CDC grant. The Coordinator, under the supervision of the Program Administrator, will be responsible for day-to-day operation of the statewide EHDI program, orchestration, implementation and training regarding the IDPH HI*TRACK system, report generation, timely submission of data reports to CDC, coordination with other state agencies, and submission of Illinois data, via the state level project team, for the NCHAM website. A personnel chart, including time commitments to UNHS, for the Vision and Hearing Program staff and ancillary, in-kind Department staff is attached as Appendix M.

Two clerical support staff, one of which is supported by the MCHB grant to DHS, are involved in daily tracking and follow-up procedures necessitated by UNHS. Currently, these staff members hold contractual and temporary employment status. One graduate intern (office associate level) with data entry and data management skills will be employed to keep pace with the ever increasing numbers of infants referred for further testing as the Act moves toward its effective date. The CDC grant will be used to establish two full time, State employee, office associate positions within the Department for ongoing support of the UNHS program. The general job description/qualification for an office associate is attached as Appendix N.

G. ORGANIZATIONAL STRUCTURE AND FACILITIES

The IDPH, Office of Health Promotion, administers the Genetic/Metabolic Screening Program, Vision and Hearing Screening, Hearing Instrument Consumer Protection, and Childhood Lead Poisoning Prevention programs along with the follow-up portion of the Hearing Screening for Newborns Act. The Illinois Project for Newborn Hearing Screening Tracking and Follow-Up director will be Mark Schmidt, IDPH Deputy Director, Project Administrator will be Gail Tanner, Vision and Hearing Programs Administrator. The Project will receive direct administration and support from IDPH staff and collaborative, in-kind, support through DHS, DSCC and the Advisory Committee, Organizational charts for IDPH, DHS, and DSCC are included as Appendix 0, 1-3. Resumes of key IDPH project staff are located in Appendix P.

H. HUMAN SUBJECTS REVIEW

The Illinois Hearing Screening for Newborns Act calls for UNHS of all infants born in the State effective December 31, 2002. Permission to test and release of information will be incorporated into hospital protocols. Data will be maintained in password protected data files.

No research using human subjects will be implemented as a result of funding for this project.

REFERENCES

Kittrel, A.P. and Arjmand, E.M. The Age of Diagnosis of Sensorineural Hearing Impairment In Children, International Journal of Pediatric Otorhinolaryngology, 40 (1997) 97-106.

White, K. Universal Newborn Hearing Screening: Issues and Evidence, CDC Presentation Oct. 1997, Atlanta, Georgia.

Yoshinago-Itano, C. Efficacy of early identification and early intervention. Seminars in Hearing. 16(2), May 1995.