New Jersey MCHB 2002 Grant

Project Title:  Universal Newborn Hearing Screening and Intervention
Project Number:  CDFA #93.251
Project Director:  Leslie M. Beres-Sochka
Phone:  (609) 292-5676
Organization Name:  New Jersey Department of Health and Senior Services
Address:  PO Box 364, Trenton, New Jersey 08625-0364
Contact Person:  Mary Knapp
Phone:  (609) 292-5676
Fax:  (609) 292-3580
E-mail/World Wide Web Address:  leslie.beres-sochka@doh.state.nj.us
Project Period:  4 Years
From:  03/30/02 to 03/30/06

ABSTRACT

Organizational Setting:  The Universal Newborn Hearing Screening (UNHS) and Intervention project (CDFA #93.251) will be located in Special Child, Adult and Early Intervention Services (SCAEIS), Division of Family Health Services (FHS), New Jersey Department of Health and Senior Services (DHSS).  SCAEIS is the Title V program for children with special health care needs, and includes Part C, Early Intervention System, case management, newborn screening (hearing and biochemical), genetics, specialized pediatric services, and the Special Child Health Services (SCHS) Registry.  Leslie M. Beres-Sochka, Acting Program Manager, SCAEIS, will be the Project Director.  Ms. Beres-Sochka directs the activities of the New Jersey Early Hearing Detection and Intervention Program, the SCHS Registry, the Centers for Birth Defects Research and Prevention, and the Sickle-Cell Tracking System (see Appendix A for a listing of acronyms).

Purpose:  Significant hearing loss is one of the most common major abnormalities present at birth and, if undetected, will impede speech, language, and cognitive development.  As many as 3 in 1,000 newborns are affected with significant hearing loss.  Universal detection of infant hearing loss requires universal screening of all infants.  By the end of 2001, 65 percent of newborns in the United States were screened for hearing loss, at a cost of approximately $25-$30 per infant.  In 2001, approximately 70% of New Jersey births received a hearing screening.

Screening is the first component of a system to ensure infants with hearing loss receive intervention by six months of age.  Other critical components include follow-up, diagnostic evaluation, and intervention.  Currently, New Jersey's system has many of the critical elements in place, including mandated screening, electronic reporting of screening results through the Electronic Birth Certificate (EBC), development of a surveillance system, direct referral to services, linkage to a medical home, and family-to-family support.  The purpose of this project is to fully implement and coordinate a statewide system for universal physiologic newborn hearing screening prior to hospital discharge, with linkages to diagnostic evaluation by three months of age, a medical home, ongoing family-to-family support, and enrollment in a program of early intervention by six months of age for those infants identified with hearing loss.

Challenges:  National data suggests that numerous infants who fail screening do not receive diagnostic testing or intervention by six months of age.  Screening newborns is of little value if follow-up and intervention do not occur.  Outcome studies have indicated that children with hearing loss who receive early intervention demonstrate better vocabulary and verbal reasoning skills than later-enrolled children.  Loss to follow-up must be minimized to achieve optimal results.  Medical providers must improve reporting results of diagnostic evaluation to the EHDI Program to ensure that children receive timely and appropriate intervention.

Goals and Objectives:  The current system in New Jersey has a strong infrastructure to support universal newborn hearing screening.  Project goals address strengthening existing components, developing new elements, and improving collaboration among key stakeholders in order to ensure infants with hearing loss receive intervention by six months of age.  The goals and objectives of the project address screening, follow-up, timely linkages with the medical home, family support, early intervention services, improving and integrating the data management system, convening an advisory panel, and professional/consumer education.  Coordination of goals and objectives will enhance successful follow-up of newborns.

Methodology:  Funds will be used to hire two staff members, a Quality Assurance Specialist (QA Specialist) and a Public Health Representative (PH Rep), and to fund two organizations to implement project activities.  The QA Specialist will serve as a liaison between the DHSS and birthing facilities, to develop follow-up protocols, implement UNHS, and reduce loss to follow-up.  The PH Rep will develop and implement a system of follow-up, to include procedures for actively tracking those lost to follow-up.  Together these two new positions will develop and implement a follow-up system to ensure the DHSS is receiving screening and diagnostic information from the medical providers. 

New Jersey's regional network of maternal and child health providers, the Maternal and Child Health (MCH) Consortia, will be funded to provide technical assistance to hospitals, improve EBC data, evaluate hospital compliance, conduct professional/consumer educational conferences, partner with other stakeholders to address key issues such as linkage to a medical home, and assist in tracking hard-to-follow newborns through their outreach workers. 

To ensure sufficient parent support for the expected 330 families identified each year with infants newly diagnosed with hearing loss, funds will be provided to the Statewide Parent Advocacy Network (SPAN).  SPAN will recruit/train 75 additional families for their parent-to-parent support network, conduct regional support sessions, collaborate with various support networks, and review literature for appropriateness.  All activities will be coordinated with existing inter/intra departmental hearing screening initiatives.  Through collaboration with other agencies, parents, and providers, project staff will develop a strong system of newborn hearing screening, diagnosis, and intervention.

Evaluation:  The evaluation will include both process and outcome measures to assess progress on each objective.  Data will be available from the EBC and hearing database, as well as from surveys and focus groups with parents and other stakeholders.  Reported data will include the Joint Committee on Infant Hearing (JCIH) quality indicators, such as the number of infants screened, failed, diagnosed, and linked to services, medical home, and family support.  The project QA Specialist will work with key stakeholders, including the Advisory Panel and MCH Consortia, to oversee the evaluation and measure progress of the stated goals and objectives.

Text of Annotation:  To address the public health implications of delayed diagnosis and treatment of newborns with hearing loss, New Jersey has mandated universal newborn hearing screening.  Since screening is only the first step toward diagnosis and treatment, the proposed project will work to ensure infants with hearing loss have a medical home, are diagnosed by age three months, have family support, and receive appropriate intervention by six months of age.

Key words:  universal newborn hearing screening, early hearing detection and intervention, medical home, early intervention, follow-up services, case management system, data integration.

NARRATIVE

1.  The Purpose of the Project

Significant hearing loss is one of the most common major abnormalities present at birth and, if undetected, will impede speech, language, and cognitive development.  It is estimated that as many as 3 in 1,000 newborns are affected with hearing loss.  Hearing loss present at birth commonly goes undetected until delays in language development have become so acute that parents and professionals are eventually led to investigate a child's ability to hear.  The average age of identification in the U.S. has been 2-1/2 years, with milder losses frequently not recognized until a child enters school.  The implications of this finding are especially significant since language acquisition actually begins at birth and progresses very rapidly during the first three years of life.  Deprived of critical language learning opportunities by an unidentified hearing loss, most children with hearing loss experience concomitant disruptions in social, emotional, cognitive, and academic growth.

In 1989, Surgeon General C. Everett Koop set a goal that by the year 2000, all infants with significant hearing loss would be identified before 12 months of age.  Subsequent federal initiatives, combined with improved technology and concerted action from hospitals and state agencies, have led to dramatic advances in procedures for early identification, making universal newborn hearing screening (UNHS) feasible prior to discharge (Appendix A has a listing of acronyms).  UNHS is recommended by the American Academy of Pediatrics (AAP), the National Institutes of Health (NIH), the Joint Committee on Infant Hearing (JCIH), the Maternal and Child Health Bureau (MCH-B), and other groups.  In the ‘Year 2000 Position Statement on Principles and Guidelines for Early Hearing Detection and Intervention Programs,' the JCIH recommended screening by one month, evaluation by three months, and intervention by six months of age.  Infants with risk indicators for delayed onset or progressive hearing loss should receive ongoing audiologic and medical monitoring for three years, and at appropriate ongoing intervals.

By the end of 2001, 65 percent of newborns in the United States were screened for hearing loss, at a cost of approximately $25-$30 per infant.  Approximately 70% of New Jersey births in 2001 received a hearing screening.  Screening is the first step of a process to ensure children with hearing loss are identified and are offered appropriate services, including diagnostic testing, linkage to a medical home, coordination with early intervention programs, and ongoing family-to-family support.

The purpose of this project is to ensure implementation of a statewide universal newborn screening program that will physiologically screen all infants prior to hospital discharge, ensure diagnostic evaluation by three months of age, and initiate enrollment in an early intervention program by six months of age, with linkages to a medical home and family-to-family support.  Currently in New Jersey, the screening and intervention pieces of the newborn hearing system exist.  Effective January 1, 2002, state law requires the screening of all newborns (Appendix B).  Results of the hearing screening for all newborns are electronically reported to the Department of Health and Senior Services (DHSS), via the electronic birth certificate (EBC) system.  The DHSS, through funding received from the Centers for Disease Control and Prevention (CDC), is developing a newborn hearing data system.  This newborn hearing data system is initially populated by data from the EBC.  Pediatric audiologic diagnostic evaluation services are available at eleven statewide Child Evaluation Centers (CEC), as well as by private practice pediatric audiologists.  A survey to be conducted this year will provide a comprehensive listing of pediatric audiologists in the state.  Legislation requires children with hearing loss be reported to DHSS, specifically to the Special Child Health Services (SCHS) Registry (Appendix C).  Staff from the registry directly refer all children to their county case management system within ten days of receiving the registration, ensuring children with special health care needs have a medical home and that care is coordinated among medical providers.  The case managers also serve as the service coordinators for Part C, early intervention, referring families to appropriate services for their child with developmental delays (Appendix D has flow diagram for SCHS Registry, Appendix E has flow diagram for service provision). 

The purpose of the proposed project is to coordinate components of the screening system to ensure all infants who fail hearing screening receive diagnostic testing by three months of age, and that those with hearing loss are referred to services by six months of age.  The proposed project will develop better coordination and evaluation of the tracking and follow-up of children who fail screening, through hiring two new DHSS staff members and expanding support to MCH Consortia.  In addition, the Statewide Parent Advocacy Network (SPAN) will receive funding to expand parent-to-parent support services.

2.  Organizational Experience and Capacity

The Early Hearing Detection and Intervention (EHDI) is located within the New Jersey DHSS, Division of Family Health Services (FHS), Special Child, Adult and Early Intervention Services (SCAEIS), the Title V program for children with special health care needs (see Chart 3.1).  SCAEIS has long supported an integrated system of care for children with special health care needs.  Since 1928, with the establishment of the Crippled Children's Commission and the first birth defects registry, New Jersey has integrated surveillance with services.  In the 1980's, the county based case management system was formed, funded from local, state, and federal funds.  The agenda of SCAEIS supports and has actively worked toward implementing the national agenda "Achieving and Measuring Success for Children with Special Health Care Needs by 2010" and the six core outcomes.

SCAEIS has extensive experience to implement, support, and evaluate UNHS.  SCAEIS is responsible for numerous surveillance and integration projects, service delivery, comprehensive, family centered case management services, and provision of Part C, Early Intervention Services.  SCAEIS maintains several confidential databases, and has linked them to other confidential datasets within DHSS.  SCAEIS maintains extensive collaborative relationships, within DHSS, with other state agencies, and with outside partners.  A strong infrastructure exists to support newborn hearing services, including mandated UNHS (see Appendix B for legislative rules), ensuring a medical home, commitment to diversity and provision of culturally competent services, and timely, electronic reporting of children who fail hearing screening.  The proposed project will be managed within this environment.

Project goals and objectives (Section 8) will be accomplished by hiring a Quality Assurance Specialist and a Public Health Representative (sections 9 and 10), providing support to the hospitals through the Maternal and Child Health (MCH) Consortia (Sections 7.4, 9, and 10), and expanding parent-to-parent support (Sections 9 and 10).  The proposed goals and activities build upon and enhance existing components of the system which include: 

Timely Identification Of Newborns Who Fail Hearing Screening and Informed Consent: Since 1997, all birth facilities use the EBC system to electronically transmit newborn data to DHSS, within five days.  The EBC has eight modules, including the standard birth certificate, perinatal and prenatal histories, information on hearing risks, data items on whether a physiological screening test was performed, test results, and parental informed consent.  Parents must provide written informed consent to have newborn hearing screening conducted (Appendix F).  Unlike the EBC in other states, hospitals have access to this system and use it for a variety of quality assurance activities, including the Joint Commission on Accreditation of Health Care Organizations.  Records on the EBC are never closed, and if updated, are automatically transmitted to the DHSS.

Law:  Universal newborn hearing screening is legislatively mandated as of January 1, 2002.  New legislation was enacted this year, strengthening the hearing screening mandate (P.L. 2001, c. 373).

Linkage to Services:  Children with hearing loss are mandated by law to be reported to the DHSS's Special Child Health Services (SCHS) Registry.  Copies of all registrations are directly provided to the SCHS case management unit in the county of the child's residence, within ten days of receipt.  The SCHS case management units serve as the Part C, early intervention service coordinators.  Hearing loss is a presumptive eligible diagnosis for early intervention.

Medical Home:  SCHS case managers work to ensure all children with special health care needs have a primary care provider and have access to services.  Case managers assist families and providers to ensure that care is accessible, continuous, comprehensive, family-centered, coordinated, culturally competent, and compassionate.

Project Management:  SCAEIS has extensive experience and success at project management.  Examples include the Centers for Birth Defects Research and Prevention, Women's HIV Initiative, Ryan White Title IV Statewide Family Centered HIV Care Network, Birth Defects Surveillance, and Systems Based Diabetes Control Program.  SCAEIS is actively involved in the completion of the Maternal Child Health Block Grant and the Preventive Health Block Grant.

Surveillance, Data Systems, and Integration:  Examples of the data systems developed and maintained within SCAEIS include the SCHS Registry, which includes children birth to 21 with birth defects (mandated) or other special needs, including hearing loss and metabolic disorders; Factors/One Easy Link database, newly implemented by New Jersey's Part C, early intervention; newborn biochemical screening follow-up; the sickle cell tracking system; newborn hearing surveillance system; and a linked analytical diabetes database.  SCAEIS has extensive experience at linkage/integration of databases, such as newborn biochemical to HIV/AIDS; SCHS Registry with HIV/AIDS; SCHS Registry with birth certificates; SCHS Registry with death certificates; birth certificates to populate hearing; and birth certificates to newborn biochemical.

Systems of Follow-up and Care:  Examples of systems developed are the SCHS county based, case management system, the Family Centered HIV Care Network, the Regional Early Intervention Collaboratives (REICs), and the newborn biochemical screening follow-up system.

Collaboration:  SCAEIS interacts with many State, Local and Federal agencies, and has developed strong partnerships to improve service provision/policy development.  Discussed in more detail in Section 7, examples include task force participation (hearing, early intervention, biochemical), close associations with federal agencies (CDC, HRSA, OSEP), partners (MCH Consortia, SCHS case management units, CECs, REICs), other state agencies (Medicaid, Division of the Deaf and Hard of Hearing, Vital Statistics, Special Education, Office for Prevention of Mental Retardation and Developmental Disabilities), professionals (physicians, audiologists), hospitals, insurers, and parents.

Diversity:  The Division of FHS has implemented a cultural competence training initiative.  The goal is a seamless delivery system of culturally competent health care for the diverse citizens of New Jersey.  Health service grantees have received training that addresses cultural sensitivity and competency.  New Jersey is committed to including women and ethnically and racially diverse people in both staff and services.  Multilingual educational brochures are available.

3.  Administration Structure

The Division of Family Health Services (FHS) consists of four service units:  Maternal and Child Health (MCH), MCH Epidemiology, Women, Infants, and Children (WIC), and SCAEIS (see Chart 3.1). The mission of FHS is to improve the health, safety, and well being of families and communities in New Jersey.  SCAEIS, the Title V program for children with special health care needs, has responsibility for four programs that ensure the health and development of populations with special needs and provide support to families:  Early Identification and Monitoring (EIM), Family Centered Care (FCC), Child and Adult Special Services (CASS), and Early Intervention System (EIS).  The Newborn Hearing Screening Program is one of four areas within EIM.  Organizational charts are displayed in Appendices G and H.

Chart 3.1 illustrates the functional responsibilities of the four SCAEIS programs.  The EIM program will manage the project and coordinate activities with other program areas, including case management, parent-to-parent, and assistance for hearing aids (FCC); hearing evaluation through the Child Evaluation Centers (CASS), and early intervention services (EIS).  SCAEIS will integrate activities with the Maternal and Child Health program and the MCH Consortia.  Other stakeholders will play an integral role in this project, as described in detail in Section 7.

4.  Available Resources

The Division of Family Health Services (FHS) programs improve the health, safety, and well being of families and communities in New Jersey.  FHS receives over $180 million dollars in federal funds, from sources such as Title V, Maternal and Child Health, Title IV, Ryan White, Title X, Family Planning, the Department of Agriculture (WIC), and the Department of Education (EIS).  Significant state funding, approximately $35 million, supports newborn biochemical screening follow-up, case management services, and EIS.  The Division of FHS and Special Child, Adult and Early Intervention Services (SCAEIS) has sufficient capacity to house the proposed project. 

The EHDI program has identified candidates for two positions, a licensed, certified Audiologist, and a Database Coordinator.  Additionally a clerical position has been filled.  A quality assurance specialist and a public health representative is proposed by this funding by DHSS to achieve the goals and objectives of the proposed project.  In-kind support will be provided by existing managerial, program, and administrative staff, including the Database Coordinator to be hired by the CDC Early Hearing Detection and Intervention (EDHI) cooperative agreement and the EHDI audiologist to be hired through MCH Block Grant funds.  Job descriptions and brief resumes are in Appendix I.

Celeste Andriot Wood, MA, Assistant Commissioner, FHS:  Ms. Wood is responsible for all activities in FHS.  Ms. Wood, a speech and language pathologist by training, formerly coordinated the activities of the EHDI Program, and is a member of numerous speech/language and hearing professional organizations.  Ms. Wood directs all activities in SCAEIS and will ensure the EHDI program will continue to be integrated into ongoing activities within SCAEIS, including reporting to the SCHS Registry, case management, and early intervention services.  Ms. Wood, responsible for all Title V activities, will advocate for hearing agendas within DHSS, other Departments, and other public and private agencies.

Leslie M. Beres-Sochka, MS, Acting Program Manager and Research Scientist, EIM: 
Ms. Beres-Sochka has primary responsibility for the EIM Program, including the EHDI surveillance system and the SCHS Registry.  Her expertise includes database management, data analysis, surveillance, and data dissemination.  The EHDI Program reports to Ms. Beres.  She is the Principal Investigator for the CDC EHDI project and is Co-Investigator for the New Jersey Center for Birth Defects Research and Prevention project.

Mary M. Knapp, RN, MSN, Coordinator, Health Projects:  Ms. Knapp has primary responsibility for reporting to the SCHS Registry and all quality assurance activities.  She has extensive experience in working in hospital newborn and intensive care nurseries.  For over 10 years, she has managed and conducted the annual audits at all birthing facilities for the SCHS Registry.  She has conducted training of hospital staff, pediatricians, geneticists, and other medical and health care providers.  She will work closely in establishing the quality assurance procedures for the EHDI system, as well as providing assistance in working with parents and professionals.

Marilyn Gorney-Daley, DO, MPH, Sr. Public Health Physician, SCAEIS:  Dr. Gorney-Daley will address medical concerns on this project, and will serve on the EHDI Advisory Panel.  She is currently overseeing the implementation of expanded testing for the Newborn Biochemical Screening Follow-up Program and will work to maintain collaboration with the EHDI project.

EHDI Audiologist:  An audiologist, specializing in universal newborn hearing screening, has been identified and will oversee the New Jersey EHDI process.  Appointment is pending salary negotiations.  The identified individual has extensive experience developing, implementing, and managing a hospital-based universal newborn screening program.

EHDI Data Base Coordinator:  A data base coordinator has been identified; appointment is pending finalization of salary negotiations.  The identified individual has extensive background in working with many of the key stakeholders in newborn hearing and all job responsibilities will support the implementation of universal newborn hearing screening.

Diane DiDonato, MPH, Program Manager, FCC:  Ms. DiDonato has responsibility for the SCHS Case Management Units and the Family-Centered HIV Case Management Network.  Ms. DiDonato has extensive experience in working with parents of children with special health care needs, development of service networks, and care coordination.

Terry Harrison, M.Ed., Part C Coordinator, EIS:  Ms. Harrison is responsible for implementation of Part C of the Individuals with Disabilities Education Act.  Ms. Harrison directs the implementation of the EIS electronic management information system.  She supports linking the EHDI and EIS databases, to provide detailed information on service referral, utilization, and outcomes for children with hearing loss.

Although New Jersey is ranked 47th in landmass, its 8.4 million residents makes it the ninth largest in population, representing three percent of the total US population.  New Jersey is the most densely populated and most urbanized state, comprised of many small to medium size cities.  Only four municipalities have more than 100,000 residents.  New Jersey has both urban and rural areas, and the population is unevenly distributed across all 21 counties.  Variations exist in size and racial/ethnic composition, socio-economic status, and availability of services.

New Jersey has greater ethnic diversity than the United States in general.  In 1999, 71.9% of mothers delivering infants in New Jersey were Caucasian, 18.7% were Hispanic, 18.3% were African American, and 7.0% were Asian or Pacific Islanders.  The diversity of the maternal and child population raises the importance of addressing disparities in health outcomes and improving services to individuals of diverse backgrounds.  Disparities in race and ethnicity persist across most health indicators.  The newborn hearing system will take into account the diversity of the newborn population, and ensure access for all newborns.

The newborn hearing screening system targets all newborns in the State, including those with late onset hearing loss.  In 2001, 112,109 live births occurred in New Jersey, of which 75,187 (67.1%) received hearing screening by some physiological measure.  Of the infants receiving the screen, 3,959 (5.3%) failed.  Mandatory screening of all births in New Jersey became effective on January 1, 2002.

To address local variations effectively, DHSS and SCAEIS have regionalized services, including the MCH Consortia and the REIC's.  SCHS case management and Part C, early intervention, services exist in each county, to serve the unique characteristics of residents.  Maternity services are available statewide from 69 facilities.  Children with developmental delays can access early intervention services at one of 43 provider agencies statewide.  However, recognizing the need for specialized intervention for some specific disorders, including hearing loss, many early intervention providers offer specialized services (Appendix J).  Across ten agencies, the full range of communication techniques is offered, including visual, oral/auditory, and cued speech.  Additionally, 11 CECs throughout the state, funded by SCAEIS, offer services on a sliding fee scale, including hearing evaluation and pediatric audiological services (Appendix K).  Three CECs have received additional SCAEIS funding to ensure all families have access to and receive audiological follow-up services.  Additional statewide pediatric audiologic services will be identified through a statewide survey of audiologists to be completed by the REICs this year (Section 10).

6.  Needs Assessment

Newborn hearing screening in New Jersey is in transition.  Through new rules governing hearing screening in New Jersey, risk based screening was replaced by a phase-in period, the goal being universal newborn hearing screening by January 1, 2002.  To better serve the citizens of New Jersey, in October 2000, the responsibility for newborn hearing screening was transferred into the EIM.  This change was made so that the EHDI Program would benefit from EIM's expertise in managing population-based screening and tracking programs, creating data management systems, and linking children to services.

The EHDI program has many strengths including:  legislation requiring all birthing facilities to implement universal newborn hearing screening, staff with the experience and expertise to implement population-based screening; the SCHS Registry's direct referral to case-management, and a comprehensive county-based case management system, which also serves as the entrée into the birth-3 early intervention program.  Several weaknesses have been identified: follow-up on infants who failed screening is decentralized, as the legislation places responsibility for follow-up on hospitals and primary care providers, and the parent-to-parent support network has only 11 parents capable of providing support to families having children with hearing loss, not nearly enough to help the anticipated 330 per year newly identified infants.  Thus the critical need in the EHDI system is for diagnosis and follow-up of infants, completion of the SCHS Registry form, and expanded parent support.  Once the child is registered in the SCHS Registry, the process for referring the families into service is seamless, as the Registry copies the SCHS case management system on all living children within ten days of registration. 

Presented below is the status and needs of key elements of New Jersey's EHDI program.

6.1 Universal Screening:  Beginning January 1, 2002, all children born in New Jersey must be screened by one month of age.  Data from the EBC demonstrate the impact of the legislation (Table 6.1).

Table 6.1

The data demonstrate a 127% increase in the number of newborns screened since 1998.  However, the failure rate has remained slightly over 5%.  Therefore, the birthing facilities need technical assistance (TA) to further increase the number of newborns screened and to reduce the failure rates.

New Jersey data support national findings that the experience of the operators, environment, and other procedures can affect screening outcomes.  In 2001, among the 45 hospitals having universal hearing screening programs for the entire year, 4.3% (2864/66929) of newborns failed as compared to 13.3% (1095/8258) of newborns in hospitals newly instituting universal hearing screening programs.  Of these 45 UNHS hospitals, 27 screened more than 95% of their newborns.  The median number of newborns failing screening was 2.2%.  Over the next year, a comprehensive evaluation of each hospital's results will be conducted by EHDI staff and the MCH Consortia and TA will be offered as necessary.

6.2 Timely audiologic follow up and diagnosis:  This is the main area proposed for improvement through this funding opportunity.  Legislation places the responsibility of follow-up on the birthing facilities.  During TA visits to all birthing facilities conducted in 2001, many hospitals have indicated they have developed comprehensive follow-up procedures.  However, some hospitals are having some difficulty in resolving whether an infant has received diagnostic evaluation.  The EHDI program intends to use the EHDI database and two new staff positions to help coordinate and provide quality assurance support to all New Jersey hospitals.

A review of several hundred follow-up forms recently received by the EHDI program, revealed that some infants lack definite diagnoses, and many were referred for further testing.  The EHDI audiologist will work with professional organizations to educate audiologists and medical professionals on the importance of conclusively diagnosing infants and recording the diagnosis on the follow-up form.  The Quality Assurance Specialist (QA Specialist) and Public Health Representative (PH Rep), proposed in this application, will be responsible for assisting the facilities and practitioners with their follow-up systems.  The QA Specialist will analyze whether the follow-up system is working, and propose modifications, the PH Rep will assist birthing facilities, primary care provides, and audiologists in tracking hard to find children.

EBC data will help hospitals with their follow-up systems by giving them a listing of children who failed their hearing screen.  Although the EBC files are retained at each hospital and can be modified at any time, the staff responsible for hearing screening and evaluation sometimes have difficulty in getting the data they need from the EBC.  At some institutions, there are not enough programmers or other staff to generate data lists or tables that the hearing staff can use for follow-up or evaluation.  The MCH Consortia have added hearing to their ongoing EBC data analysis.  They will receive funding through this grant to provide assistance to their member hospitals in accessing and entering hearing screening data, and will assist birthing facilities utilize EBC data in their hearing tracking systems.

6.3 Linkage to a medical home:  As described in Section 7.3, SCAEIS has long supported the concept of a medical home for every child, and has a long history in linking children participating in its programs to a primary care provider.  The SCHS case management system strives to ensure that the care for children with special needs is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and delivered in a culturally competent environment.  Case managers work with families, the primary care practitioner, and other medical service providers to ensure that both the medical and social needs of children and families are met. 

The primary care practitioner needs to know the results of the hearing screen.  The EHDI program will recommend to hospitals that they send results of hearing screening to the primary care provider of record.  The EBC contains the name of the primary care provider at the time of birth.  As children with hearing loss are identified, SCHS case managers will ensure linkage to a medical home.  New Jersey's Children's Health Initiative Program (CHIP) program, FamilyCare, provides medical insurance and allows families with multiple children to stay with one primary care provider.  New Jersey has actively targeted the uninsured population and has extensive initiatives to enroll eligible families into FamilyCare.  Children eligible for Medicaid are linked to a medical home and, through the Early and Periodic Screening Diagnosis and Treatment Program (EPSDT), are eligible for hearing services.

For many children with special needs, including hearing loss, specialized services are needed and coordination of care over numerous providers is essential.  The SCHS case managers and the early intervention service coordinators will serve to facilitate this coordination.  SCAEIS will continue to monitor medical home status and work to ensure all infants have a medical home.

6.4 Insurance: 

The insurance status of families of children New Jersey has been assessed.  Insurance is not a barrier to receiving a comprehensive hearing evaluation because many programs are in place to ensure the uninsured have access to services.  Data from the Child Health USA 2000, indicates that 13.8% of children under 19 are uninsured, slightly less than national average of 15.5%.  In New Jersey, for children with special health care needs, data from both case management and specialized pediatric services (child evaluation centers, cleft palate centers, etc.) indicate that about six percent of the children served have no insurance.  New Jersey has expanded the FamilyCare program to include families up to 350% of poverty, and levels A, B and C cover hearing testing.  Families on Medicaid have hearing services provided through EPSDT.  New Jersey has 11 Child Evaluation Centers, which offer comprehensive hearing services on a sliding-fee scale, three have received additional funding from SCAEIS to provide no cost audiological services for those having no other means of payment.  Staff of the EHDI program have held multiple discussions with New Jersey's Early Intervention System.  Early Intervention has agreed to be the payer of last resort for families requiring comprehensive hearing evaluations.  Newly enacted legislation (P.L. 2001, c. 373) has not only strengthened the mandate to screen all newborns for hearing loss, but it requires many insurance providers to pay for the screening separate and distinct from payment for routine new baby care, with no deductible applied to the family.

FHS has partnered with the Department of Human Services, FamilyCare, to increase the enrollment of children with special health care needs (Appendix L).  Beginning in SFY 2001, New Jersey's FamilyCare has committed $500,000 over two years to support this initiative.  The DHSS will provide grant funds to the 21 case management units to support targeted inreach and outreach activities to bolster enrollment of children receiving case management services in FamilyCare.

6.5 Tracking system:  Through funding received from CDC, an EHDI tracking system is being developed.  This system will monitor screening of all infants born in New Jersey, and track infants who failed their screen through diagnostic evaluation into intervention.  This system will also enable the EHDI program to keep a record of the infant's primary care provider.  The system will support the goals of this project through provision of monthly status reports for each birthing facility that the EHDI audiologist and the QA Specialist will use to monitor compliance and target outreach efforts.  The Database Coordinator employed for the CDC project will work collaboratively with the proposed EHDI audiologist.

6.6 Advisory panel:  New Jersey formerly had a Newborn Hearing Task Force (Appendix M for roster).  It consisted of medical practitioners and educators, and was primarily called upon for special projects, the most recent being a review of the UNHS rules.  In conjunction with newly enacted legislation and the CDC cooperative agreement the group is being reconstituted, with expanded the membership and function.  P.L. 2001, c. 373 requires the DHSS to establish a Hearing Evaluation Council, to provide advice on the implementation of the UNHS program.  The law specifies that the Council must have at least seven members including: a board certified pediatrician, a board certified otolaryngologist, a certified audiologist, a profoundly deaf person, a hearing impaired person, a hearing person with deaf parents, and a concerned citizen.  Although not specified in the law, the Council will also include representatives from stakeholder groups including special education (part B), early intervention (part C), case management, hospital administration, the AAP, and parents of children with hearing loss.  As one of its first tasks, the panel will conduct a needs assessment survey of parents to determine whether families of children with hearing loss receive accessible and culturally competent support and are satisfied with the services they receive (Section 7.8).

6.7 Professional and public education:  As described in Section 5, New Jersey has a diverse population, and the racial and ethnic mix of New Jersey mothers, infants, and children is slightly more diverse than the overall population.  To address ethnic diversity, the EHDI program provides multi-lingual educational materials for distribution.  Birthing facilities distribute the ‘Can My Baby Hear' brochure to all new parents.  This brochure is available in English, Spanish, and Haitian French.  Materials describing the SCHS Case Management System and the EI System are available in several languages.  Multi-lingual, culturally competent materials are needed for other population subgroups.  The EHDI Advisory Panel and the MCH Consortia will review existing materials available through NCHAM, Boys Town, Marion Downs National Center, and other states and organizations.  These materials will be modified for use in New Jersey, and, if necessary, new materials will be developed.

Both consumers and professionals need better education, regarding the importance of hearing screening.  Future parents need to know to expect and ask for the hearing screen.  Professionals need to know that hearing screening can be conducted on newborns, and that timely follow-up is critical if a screen is failed.  With the assistance of the MCH Consortia and the AAP, educational seminars will be provided for both consumers and professionals.  Additionally, hearing screening information will be added to the childbirth classes being offered in hospitals. 

SCAEIS partnered with NCHAM, the MCH Consortia, and the New Jersey Division of the Deaf to offer and educational program for professionals.  In May 2001, three regional workshops were held for hospitals and audiologists.  Karl White and Beth Prieve, representing the Technical Assistance System at the National Center for Hearing Assessment and Management (NCHAM), presented sessions on implementing universal newborn hearing programs.  Further workshops are being considered for 2002, to provide in-depth technical assistance to birthing facilities and professionals.

6.8 Family support:  Increasing the number of children early identified with hearing loss will increase the need for parent-to-parent support.  Each year more than 300 infants are estimated to be identified with hearing loss.  While a system of parent-to-parent support is in place in New Jersey, presently only 11 parents of children with hearing loss have been trained to provide parent-to-parent support.  Through funding requested in this application, the Statewide Parent Advocacy Network (SPAN) will receive financial support to increase the number of parents of children with hearing loss trained to provide support, and will ensure inclusion of parents representative of the diverse population of New Jersey.  This is discussed in detail in Sections 9 and 10.

7.  Collaboration and Coordination

Identifying infants with hearing loss and providing them services involves many different stakeholders and disciplines.  The success of the proposed project will require coordination of activities across numerous collaborators.  SCAEIS will coordinate and evaluate a system that promotes timely identification of/intervention for children with hearing loss.  Letters of support from a selection of collaborators and stakeholders involved in the implementation of universal newborn hearing screening in New Jersey are included in Appendix N.

7.1  Hospitals:  Birthing facilities are required by law to screen all newborns for hearing loss prior to discharge from the facility.  To implement the law, hospitals must perform several tasks, in addition to screening.  They must first obtain written informed consent for the screening.  Hospitals also must establish guidelines for the provision of follow-up services, including confirmatory pediatric audiologic assessment, completion of the newborn hearing follow-up report form, counseling, and education.  In developing their guidelines, hospitals are required to address such key components as screening methodology, failure rates, one vs. two-stage screenings, written notification of results to the newborns' medical home, mailed reminders to parents, follow-up, and parental/staff education.  These guidelines must be provided to the EHDI program for review.  During site visits to all birthing facilities completed in 2001, hospitals described their follow-up protocols.  Many facilities with pediatric audiology capability are actively scheduling the diagnostic appointment before discharge.  Other facilities have tracking systems in place to contact the families, by either telephone or mail, to remind them of the need for diagnostic evaluation and to determine whether they have completed their evaluation.  The EHDI program will provide technical assistance to hospitals and evaluate the success of screening and follow-up.  Additionally, the MCH Consortia and the two positions requested in this proposal, a Quality Assurance Specialist and a Public Health Representative, as described in Sections 9 and 10, will assist in follow-up.  The EHDI audiologist will offer educational activities at the hospitals.

7.2  Pediatricians/medical home:  Communication and involvement of pediatric providers will be key to ensuring hearing evaluation, whether in response to a failed screening or as on-going clinical management.  The New Jersey Chapter of the AAP will help to educate primary care providers on the importance of early detection of hearing loss, and on the mandate to report diagnosed children to the SCHS Registry.  A ‘newborn hearing champion' has been recruited to work with the EHDI program to ensure successful implementation.  SCHS county based case managers, as well as the MCH Consortia, work to ensure children have a medical home.  SCAEIS promotes accessibility to well-trained physicians and other providers experienced in the comprehensive management of children with special health care needs through funding of specialized services, including comprehensive child evaluation centers, cleft palate centers, and genetic centers.  The EHDI audiologist and MCH Consortia will provide education to providers, and will ensure compliance with mandated responsibilities.

7.3  Audiologists:  Children who fail hearing screening need audiologic evaluation to determine if there is permanent hearing loss.  EHDI staff and the MCH Consortia will work with the audiology community to ensure timely diagnosis and completion of the Newborn Hearing Follow-up Reporting form, as required by legislation.  The EHDI audiologist will contact professional audiology organizations to enlist their involvement in educating the audiology community of their responsibilities in the UNHS process.  The EHDI audiologist and MCH Consortia will work to ensure that information provided to parents is unbiased and presents the full range of available intervention options.

7.4  MCH Consortia:  Legislation requires that every birthing facility belong to one of seven MCH Consortia.  The Consortia are a regionalized network of maternal and child health providers with emphasis on prevention and community-based activities; one of their functions is to ensure all children have a medical home.  The Consortia are monitored by the Division of FHS, Maternal and Child Health unit, the Title V program for maternal and child health.  The consortia are charged with developing regional perinatal and pediatric plans, total quality improvement systems, professional and consumer education, transport systems, data analysis, and infant follow-up programs.  Each Consortium must submit a three-year regional perinatal and pediatric plan to the DHSS for approval.  The regional plans address cultural and economic diversity, pediatric morbidity and mortality, risk appropriate prenatal care, low birth weight, and teen births. 

As described throughout this proposal, the Consortia will play an active role in implementation of hearing screening and assessment through improvement of the EBC, coordination of follow-up, and conducting educational activities.  The Consortia will incorporate newborn hearing evaluation into their ongoing Total Quality Improvement (TQI) activities, assist in monitoring hospital compliance, facilitate the recording of accurate information on the EBC, conduct data analysis of the EBC, track hard-to-follow newborns, gather information on reimbursement issues surrounding screening and diagnostic testing, increase public awareness by providing direct education and outreaching to obstetric providers (family planning, obstetrical/gynecological, prenatal clinics), and host both hospital-based and regional professional and consumer educational seminars and conferences. 

7.5  Statewide Parent Advocacy Network (SPAN) and Parent-to-Parent:  SCAEIS will provide funding to SPAN to train additional parents to provide support to families with children diagnosed with hearing loss.  SPAN will target efforts to connect parents in need of support with culturally appropriate ‘veteran' parents.  SPAN will ensure parents represent the linguistic, cultural, ethnic, and geographic diversity of New Jersey.  Research suggests that families connected to peer support are more knowledgeable about resources, have a sense of empowerment, feel more hopeful, and have a more positive attitude about their lives and the abilities and future of their children.

7.6  Early Intervention System (EIS) and the Early Intervention (EI) Stakeholder Task Force:  Hearing loss is a presumptive eligible diagnosis for Part C, early intervention services.  The lead agency for Part C is DHSS and the SCHS case management units are designated as the single point of entry and provider of targeted service coordination.  In 1998, in response to a set of emerging issues related to service delivery and quality assurance, the Commissioner of DHSS established the EI Stakeholder Task Force to conduct a comprehensive review of the EIS, including public input.  The Task Force developed a set of 51 recommendations on how to improve the EIS to create a more efficient and effective, family-centered, outcome driven program.  The recommendations included establishment of a Service Delivery Task Force to address issues including the system's capacity to provide equitable access to appropriate evaluations and services for children with selected conditions, including hearing loss (Appendix O).  The work of this Task Force continues and will be shared with the EHDI Advisory Panel.  Efforts such as these will ensure a responsive and appropriate service delivery system exists for children. 

7.7  Health care providers/insurers:  Despite challenges created by a rapidly changing health care environment, SCAEIS has continued to assist families in navigating the complicated managed care system to obtain necessary services.  SCHS case managers have continued to work with insurers to obtain and coordinate benefits.  For example, to assist families in accessing the Medicaid managed care system, SCAEIS formed and convened the Medicaid Managed Care Alliance, comprised of parents, advocacy groups, and professionals.  In September 2000, a one-day conference was held for health care providers and consumers to open avenues of communication between families with special needs children, health care providers and the HMOs.  The recently enacted UNHS law requires non-ERISA insurers to cover the hearing screen, separate and distinct from the newborn stay, and with no deductible for the insured.  SCAEIS has provided additional funding to three of eleven child evaluation centers to provide comprehensive infant/pediatric audiology services, at low or no cost, to ensure all families have access to diagnostic services.  EI has agreed to be the payer of last resort for diagnosing hearing loss in infants.

7.8  EHDI Advisory Panel:  Successful implementation of the EHDI system will depend on a focused effort and open communication between collaborators and stakeholders, including families.  The EHDI Advisory Panel will provide valuable expert input, public and private constituency representation, and family member involvement to ensure the activities are directed and coordinated.  New Jersey has long recognized the important role of advisory panels, including a Newborn Hearing Task Force, as mandated by the 1977 legislation requiring evaluation of newborn hearing.  The Newborn Hearing Task Force will be expanded to include additional representatives.  The current membership of the task force includes a wide range of professionals:  physicians, nurses, audiologists, speech pathologists, and members of the Departments of Health and Senior Services, Human Services, and Education.  The panel will be expanded to include members of the deaf and hard of hearing community, parents of hearing-impaired children, and other essential stakeholders.

7.9  Other State Departments/Agencies:  Strong, collaborative relationships exist between the DHSS and the Departments of Human Services and Education.  Members from each Department are involved on numerous advisory panels, and several shared initiatives involve multiple Departments.  These relationships will benefit implementation of UNHS, detection, and intervention.  One recent collaboration occurred in May 2001, when the Division of the Deaf and Hard of Hearing (Dept. of Human Services) provided funding to DHSS to train hospitals and other professionals on implementing UNHS systems.  Three, one-day training conferences were held, coordinated by SCAEIS staff and the MCH Consortia, using NCHAM experts.

7.10  Federal agencies/other states:  SCAEIS continues to collaborate with Federal agencies and other states on universal newborn hearing screening activities.  SCAEIS has used these opportunities to identify both barriers and essential areas of concern, gain advice on other states' successes, and obtain technical assistance.  One example is that in February 2001, Karl White conducted an on-site TA visit to review UNHS in New Jersey (Appendix P).  Maintaining these relationships will provide valuable input for the newborn hearing system.

7.11  Family/parental involvement:  The newborn hearing system must be responsive to the concerns of parents and families with hearing impaired children as well as those of unaffected newborns.  Mandated screening affects all newborns and their families.  Parental involvement on the EHDI Advisory Panel will provide one source of input and opportunity for communication.  Parents comprise 51% of the Regional Early Intervention Collaboratives' boards/councils.  Parents will have the additional opportunity for comment through communication with medical providers, case managers, parent-to-parent support, and service providers. 

8.  Goals and Objectives

To ensure that infants with hearing loss are offered intervention by six months of age, the newborn hearing system needs to be carefully defined, including addressing what can be done to reduce loss to follow-up of newborns who fail screening.  The current system in New Jersey has a strong infrastructure with many essential elements in place, however, improved follow-up is needed.  The goals of this project address strengthening existing components, developing new elements, and improving collaboration among the key stakeholders.

Goal 1: All infants born in New Jersey will be screened for hearing loss prior to hospital discharge or by one month of age, in accordance with New Jersey State Law.

1.1  By March 2006, 95% of all infants born in New Jersey will be screened for hearing loss.

1.2  By December 2002, EHDI staff will provide onsite technical assistance to all maternity hospitals to review universal screening procedures in each birthing facility.

1.3  Annually throughout the grant cycle, technical assistance will be provided to birthing facilities to review EHDI procedures to ensure all infants are screened and to reduce the failure rates.

Goal 2:  All infants having positive screens will receive audiologic evaluation by three months of age.

2.1  By March 2006, 95% of children failing their hearing screening will receive a diagnostic audiological examination by three months of age.

2.2  By March 2003, each birthing facility will have a system in place to follow-up on failed infants, including written guidelines and an annual evaluation.

2.3  By March 2003, parents will receive appropriate and comprehensive information regarding follow-up, including a listing of pediatric audiologists.

2.4  By December 2004, a system will be in place for the PH Rep to facilitate the follow-up of hard to track children, including linking with procedures used by the Newborn Biochemical Screening Program.

Goal 3: All infants with hearing loss will have a medical home.

3.1  By March 2006, SCHS County Case Managers will ensure all infants with hearing loss have a medical home.

3.2  By December 2002, procedures for linking infants to a medical home will be on file at the DHSS.

3.3  Monthly throughout the grant, the QA Specialist will monitor EBC data and tracking data to verify primary care provider on file at the DHSS.

Goal 4: All families having children with hearing loss will receive ongoing family support.

4.1  By March 2006, SPAN will increase the number of families available to provide parent-to-parent support from 11 to 75.

4.2  By December 2003, hearing services in New Jersey will be organized so families can participate in decision-making at all levels, and are satisfied with the services they receive.

Goal 5:  All infants identified with hearing loss will receive appropriate medical and developmental intervention by six months of age.

5.1  By March 2006, 95% of children with hearing loss will be offered early intervention services.

5.2  By March 2006, culturally competent and linguistically appropriate educational materials will be available on the EHDI process.

5.3  By December 2003, early intervention providers will be available to provide appropriate care for very young children with hearing loss.

Goal 6:  The EHDI Program will include an Advisory Panel with appropriate representation that provides ongoing guidance to the program.

6.1  By September 2002, an Advisory Panel will be convened, in accordance with New Jersey Law.

6.2  By December 2003, the Advisory Panel will have representation from stakeholders, including professionals involved in screening, diagnosis, follow-up, and education, families, and the deaf community.

6.3  On an ongoing basis, the Advisory Panel will review literature for accuracy and ensure it is culturally sensitive and linguistically appropriate for New Jersey's populations.

Goal 7: A statewide data management system will provide accurate information about program status and follow-up of babies needing EHDI services.

7.1  By December 2002, and continuing, facilitate development of the EHDI data system.

7.2  In conjunction with CDC-EHDI project, the data system will include the national EHDI data items.

7.3  By March 2003, MCH Consortia will include hearing performance measures in their TQI project.

7.4  On an ongoing basis, opportunities for data integration with other DHSS systems will be examined, and linkages will be made as appropriate.

9.  Required Resources

Support is requested in the amount of $220,000 to be used for activities related to minimizing loss to follow-up, improving reporting follow-up results to DHSS, improving access and referral to services, and enhancing family support for infants diagnosed with hearing loss.  The project activities will include hiring a Quality Assurance Specialist (QA Specialist) and a Public Health Representative (PH Rep), supporting targeted services provided by the MCH Consortia, and providing funding to SPAN to support dedicated outreach to parents of infants and young children diagnosed with hearing loss.

Funds from the proposed grant in the amount of $ 94,421.31 will be used to create two new staff positions, a QA Specialist ($50,280.15) and a PH Rep ($43,841.16).  In addition to salary, fringe, and indirect costs, support is also requested for travel and other routine office expenses as described in the business proposal.  The QA Specialist will:

•   ensure successful implementation of universal newborn hearing screening and intervention, primarily by serving as a liaison between DHSS, hospitals, audiologists, and families, and through collaboration with the MCH Consortia,
•   provide TA to birthing facilities to implement the law and establish follow-up procedures,
•   facilitate the follow-up process by assisting the birthing facilities with establishing a tracking system, and
•   educate birthing facilities on the use of the electronic birth certificate to report screening results to the DHSS.

The PH Rep will:

•   ensure successful implementation of universal newborn hearing screening and intervention, primarily by serving as a liaison between DHSS, hospitals, audiologists, the medical home, and families,
•   assist birthing facilities in follow-up procedures,
•   provide limited active follow-up for the hardest to track families,
•   provide direct contact with the medical home and audiologists to ensure families are receiving follow-up services, and
•   provide direct contact with the medical home, birthing facilities, and audiologists to ensure hearing screening/diagnostic information is being sent to DHSS.
•   Funding in the amount of $38,500 is requested for the MCH Consortia ($5,500 to each of the seven regional MCH Consortia).  The MCH Consortia will:
•   add newborn hearing screening elements to their routine TQI activities, including EBC hearing variables and reporting children with hearing loss to the EHDI program and to the SCHS Registry (although the MCH Consortia are mandated to conduct total quality improvement activities, hearing screening is not currently one of the mandated areas),
•   collaborate with QA Specialist to ensure all birthing facilities have a working system to ensure children with hearing loss are reported to the SCHS Registry,
•   provide birthing facilities with technical assistance in setting up a follow-up system to ensure infants who have failed hearing screening are offered audiological diagnostic evaluation,
•   collaborate with QA Specialist to ensure hospitals have a working system in place to track children who fail hearing screening,
•   partner with QA Specialist, SCHS case managers, and EI case managers, to ensure infants identified with hearing loss have a medical home, and
•   include in outreach activities, initiatives to improve parental/guardian and professional knowledge about newborn hearing screening and the need for follow-up activities.

Funding is requested in the amount of $30,000 to support enhanced parent-to-parent services, avail-able through SPAN.  Currently, 11 parents of children with partial and/or profound hearing loss have completed orientations to become volunteer support parents, and have been matched to provide support to five parents of children with hearing loss.  SPAN will use funds from this grant to:

•   recruit and train an additional 75 families, reflecting the racial, ethnic, cultural and geographic diversity of New Jersey, to expand the network to meet the increased need due to the expected increase of children identified with hearing loss,
•   refer families to the SCHS case management units,
•   facilitate linkage to a medical home,
•   conduct 15 regional support parent training sessions,
•   make matches between families and collaborate with and refer families to Parents for Deaf Awareness, EI Parents Helping Parents, Family Voices, Project Care, Family Support Center, CoOptions, and parent support groups,
•   include hearing support information in the Parent-to-Parent newsletter,
•   review EHDI Program literature and brochures for readability, cultural competency, and effectiveness, and
•   recruit parents for EHDI service focus groups and parent satisfaction evaluations.

10.  Project Methodology

New Jersey has taken significant steps towards establishing a comprehensive universal newborn hearing screening system.  The system includes legislatively mandated screening, electronic reporting of screening results, development of an EHDI surveillance system, direct referral to medical and early intervention services, linkage to a medical home, and parent-to-parent support.  The purpose of this project is to ensure implementation of a sustainable universal early hearing detection and intervention system where all infants born in New Jersey with hearing loss receive appropriate intervention by six months of age.  The specific goals will be accomplished by the QA Specialist, PH Rep, SPAN, and the MCH Consortia, coordinated with ongoing activities of the EHDI Program, the SCHS Registry, the Newborn Biochemical Follow-up Program, the CDC-EHDI Project, and the EI System.  Strong collaboration with hospitals, the AAP, primary care providers, audiologists, the SCHS Case Management System, Medicaid, FamilyCare, the Departments of Human Services and Education, and the EHDI Advisory Panel will help meet project goals and objectives.  Specific activities of this grant will focus on:

• fully implementing universal hearing screening in New Jersey,
• increasing the number of children receiving diagnostic follow-up by three months of age to 95%,
• ensuring timely linkage to medical home, family support, and appropriate intervention,
• convening the EHDI Advisory Panel with appropriate representation from stakeholders,
• improving the data system, and
• providing culturally competent, appropriate education to families.

Goal 1: All infants born in New Jersey will be screened for hearing loss prior to hospital discharge or by one month of age, in accordance with New Jersey State law.

1.1 By March 2006, 95% of all infants born in New Jersey will be screened for hearing loss.

This objective reflects the JCIH recommendations and is one of the Healthy New Jersey 2010 objectives.  The QA Specialist will use data provided by the EHDI tracking system and EBC to ensure infants are receiving their screens.  On a monthly basis, the QA Specialist, EHDI audiologist, and EHDI Database Coordinator will review data from the EBC to determine the number of children screened and failed at each hospital, and the percentage of failed screens for which follow-up reports have been received.  This information will be shared with each hospital.  The QA Specialist, in partnership with the MCH Consortia, will work with each facility to develop procedures to identify and screen children prior to discharge and to reduce the number not screened.  The EHDI audiologist will collaborate with the AAP and provide pediatricians educational materials on the importance of completing the hearing screen.

1.2  By December 2002, EHDI staff will provide onsite technical assistance to all maternity hospitals to review universal screening procedures in each birthing facility.

Under the current rules, the birth facilities are responsible for ensuring the child is screened prior to discharge, or by 30 days.  As a follow-up to visits conducted at all birthing facilities in 2001, and to ensure implementation of universal screening, EHDI staff will revisit each maternity hospital by December 2002 to review the facility's newborn hearing screening program.  Using hospital evaluation tools available on NCHAM's website, EHDI staff will assess such areas as the availability of written hospital guidelines and protocols, staff training, failure rates, communication with parents and physicians, and reimbursement issues.  Screening protocol will be reviewed for compliance with the law.  Particular attention will be paid to the facility's plan to track infants lost to follow-up.  The PH Rep funded through this opportunity, will assist the birthing facilities in implementing screening and follow-up procedures and will be available on a daily basis to provide assistance.  EHDI staff will use this visit as an opportunity to provide technical assistance to the facilities.  The EBC hearing screening data will be reviewed with each facility.

1.3 Annually throughout the grant cycle, technical assistance will be provided to birthing facilities to review EHDI procedures to ensure all infants are screened and to reduce the failure rates.

The percentage of infants screened is one of the MCH Block grant indicators.  This data is obtained from the EBC.  To improve the quality of the EBC data, the MCH Consortia provide quality improvement analysis of the EBC data for member hospitals.  The Consortia monitor the accuracy of data entered into the EBC, providing training and technical assistance (TA) to their member hospitals.  During the summer of 2001, the MCH Consortia added hearing data to their routine TQI activities and have provided TA to each facility to ensure hearing data is being properly entered into the EBC.  The TQI committee will continually monitor the implementation of the universal hearing screening as well as analyze data collected.  EHDI staff will conduct on-site audits at each facility, and the EHDI audiologist will provide TA to birthing facilities.  TA will include methods screeners can use to increase the number of children screened and to reduce the failure rate.

Starting in January 2003, the EHDI audiologist will conduct formal on-site audits of each birthing facility to review the hospitals' performance and identify areas needing improvement.  Using the procedures utilized during the TA visits in 2002, the annual audit will assess for compliance with the law, such areas as the availability of written hospital guidelines and protocols, number of infants screened, staff training, communication with parents and physicians, failure rates, follow-up, and reimbursement issues.  A sampling of charts will be reviewed.  The EHDI audiologist will ensure that hospitals have lists of providers who can conduct the diagnostic testing.  The EHDI audiologist will provide each hospital data from the state EHDI data system detailing the number of children who failed screening and whose follow-up forms were not completed and returned, indicating the number of children potentially not being diagnostically tested.  EHDI staff, in collaboration with the MCH Consortia, will develop a status report on the hospital's performance, noting such areas as screening and failure rates, which will be provided back to the facilities.

Goal 2: All infants having positive screens will receive audiologic evaluation by three months of age.

2.1  By March 2006, 95% of children failing their hearing screening will receive a diagnostic audiological examination by three months of age.

This objective reflects the JCIH recommendations and is one of the Healthy New Jersey 2010 objectives.  Birthing facilities are required by legislation to follow-up on children failing screens.  Hospitals will be encouraged to provide newborn hearing results to the primary care provider.  For newborns who fail hearing screening, hospitals must provide parents with names of audiologists who can conduct diagnostic testing and a Hearing Follow-up report form.  This form is mandated to be completed following the diagnostic examination and the diagnostician must return it to the EHDI program.  Each birthing facility is mandated to develop a follow-up protocol and file it with DHSS.  The QA Specialist will work with the birthing facilities to develop an appropriate protocol and ensure implementation of the protocol.  Additionally, children diagnosed with hearing loss are required to be reported to the SCHS Registry. 

The EHDI audiologist, the AAP, and the MCH Consortia will work with the audiologists and physicians to ensure timely diagnosis and completion of the follow-up report form, as legislatively required.  As part of outreach to the medical community, the EHDI audiologist will prepare and distribute educational materials on the importance of diagnosing infants by the third month of life.  The EHDI audiologist and the AAP ‘newborn hearing champion' will provide technical assistance to the medical community on the importance of making an early diagnosis.

Finally, the EHDI Advisory Panel will identify new activities to improve diagnostic rates.  Because the panel has representatives of all stakeholder groups, including parents, it will be a good forum to assess barriers to testing.  The panel will have the opportunity to make recommendations to DHSS on needed changes and on activities with the potential to reduce loss to follow-up.

2.2 By March 2003, each birthing facility will have a system in place to follow-up on infants who failed their hearing screening, to include written guidelines and an annual evaluation.

Under the current legislative rules, hospitals must establish guidelines for the provision of follow-up services, such as audiologic evaluations of newborns with abnormal or inconclusive screening results, submission of the Newborn Hearing Follow-up Report to SCAEIS, and counseling and educational services for the parents.  Newly enacted legislation requires all birthing facilities to file written protocol with the DHSS on forms to be designed by DHSS.  The QA Specialist will work with the birthing facilities to ensure they comply with this new mandate.  Additionally, the QA Specialist will review the protocols and will assist the birthing facilities in developing effective follow-up protocols.  EHDI staff, during the hospital visits discussed earlier, will review hospital protocol for procedures to encourage families of infants who have failed to have a diagnostic evaluation.  In collaboration with the MCH Consortia, hospitals will develop a follow-up system to track infants who have failed their hearing screening, to include notification of the primary care practitioner and reminder letters to the families.  The QA Specialist will closely monitor the follow-up rates.  The PH Rep will assist the hospitals track the hard to find children, utilizing the expertise of our Newborn Biochemical Screening Follow-up Program.

2.3 By March 2003, parents will receive appropriate and comprehensive information regarding follow-up, including a listing of pediatric audiologists.

Currently, there is no statewide listing of audiologists capable of screening the infant population in New Jersey.  EIM staff will partner with the REICs to conduct a survey of all audiologists in New Jersey.  The REICs will examine existing surveys obtained from other states and the NCHAM website, and modify them to meet the needs in New Jersey.  By the end of 2002, they will administer the survey and compile a listing of audiologists experienced with infants.  This listing will be provided to all birthing hospitals and will be made available to all new parents.  The listing will be periodically updated throughout the grant cycle.

The EHDI Advisory Panel will review literature available from NCHAM, Boys Town, other states, and various organizations on the importance of follow-up.  They will make recommendations on appropriate, comprehensive, and unbiased materials suitable for distribution to parents.  The MCH Consortia will ensure member facilities distribute the literature to the parents.

2.4  By December 2004, a system will be in place for the PH Rep to facilitate follow-up of hard to track children, including linking with procedures used by the Biochemical Screening Program.

In collaboration with the CDC project, EHDI staff will develop reports from the tracking system to identify children requiring audiological evaluation, and provide them to the birthing facilities.  Using techniques developed by the New Jersey Biochemical Screening Program, the PH Rep will assist and facilitate tracking of children.  On a monthly basis, the QA Specialist will provide each hospital a report detailing the children who failed screening and whose follow-up forms have not been returned, indicating the number of potential children not being diagnostically tested.  Facilities will be asked to check these lists against their records.

For those children whom the hospital is having difficulty tracking or the parent is having difficulty arranging a diagnostic test, the PH Rep and the MCH Consortia will provide ongoing support to the hospitals.  The rules governing the MCH Consortia stipulate that one of the major functions of the Consortia is "a system for the provision of infant follow-up services."  The minimum requirements for licensure of the MCH Consortia, includes a system for discharge planning, infant follow-up and child health care coordination be developed and implemented in the region.  The MCH Consortia will utilize their outreach workers to try to reach families lost to follow-up, this includes telephone and in-person contact.  The outreach staff employed by the seven MCH Consortia are an integral component of the follow-up system.  The PH Rep will work with the MCH Consortia and the birthing facilities to coordinate and track those lost to follow-up.

As follow-up reports are returned and indicate hearing loss, the QA Specialist will ensure that a SCHS Registry registration form is also returned.  For children lacking a registration form, the PH Rep will contact the diagnostician to have one completed.  This will ensure linkage to case management and early intervention services, as the SCHS Registry directly refers children into the service system.

The EHDI Advisory Panel will recommend new activities to facilitate follow-up.  Since the panel has stakeholder representation, including parents, it will be a good forum to assess barriers to testing.  The panel will make recommendations to DHSS on activities with the potential to reduce loss to follow-up.

Goal 3: All infants with hearing loss will have a medical home.

3.1 By March 2006, SCHS County Case Managers will ensure all infants with hearing loss have a medical home

As discussed in Section 6, SCAEIS has a long history of linking Title V participants to a medical home.  Through both the SCHS case management and early intervention systems, children are linked to a medical home, and care is coordinated with the medical home.  Hospitals will provide the primary care provider with the results of the hearing screen.  The MCH Consortia will work with the hospitals to ensure data on the primary care provider is accurate and the linkage is made.  The New Jersey Chapter of the AAP will also be involved in ensuring appropriate linkages and advocating for screening, follow-up and intervention.

3.2 By December 2002, procedures for linking infants to a medical home will be on file at the DHSS.

Newly enacted legislation requires the birthing facilities to file a copy of their procedures for UNHS with DHSS.  Identification of the primary care giver will be one of the required elements of the screening protocol.  SCHS Case Management will file their procedures on linking infants to the medical home with the EHDI program.  The QA Specialist will review these procedures to ensure linkage is included, and will work with the facilities to assist in protocol development.

3.3 Monthly throughout the grant, the QA Specialist and PH Rep will monitor EBC data and tracking data to verify primary care provider on file at the DHSS.

The EHDI Data Coordinator will provide the QA Specialist a monthly listing of children with failed screens.  This listing will include information on the child's primary care provider.  The QA Specialist will work with the birthing facilities to remedy cases where primary care giver is missing.  For cases where the birthing facility is unsuccessful, the PH Rep will utilize the experience of the Biochemical Follow-up Program and develop and implement a protocol to obtain medical home information.

Goal 4: All families having children with hearing loss will receive ongoing family support.

4.1 By March 2006, SPAN will increase the number of families available to provide parent-to-parent support from 11 to 75.

SPAN will add 75 new families capable of providing support to families having children with hearing loss.  SPAN will recruit and train the families in providing support, and will ensure culturally competent and linguistically appropriate parent-to-parent support will be available for all parents, reflecting the racial, ethnic, cultural and geographic diversity of New Jersey.  The parent partners will refer children to SCHS case management units, thus facilitating linkage to the medical home.  SPAN will make the matches between families.  They will refer families to Parents for Deaf Awareness, EI Parents Helping Parents, Family Voices, Project Care, Family Support Center, CoOptions, and other parent support groups.  The Parent-to-Parent newsletter will publish information about the availability of hearing services and support.  SPAN will also work in concert with the EHDI Advisory Panel to review program literature and brochures for readability, cultural competency, and effectiveness.

4.2 By December 2003, hearing services in New Jersey will be organized so families can participate in decision-making at all levels, and are satisfied with the services they receive.

In New Jersey, numerous avenues currently exist for parental input regarding their child's early intervention services.  Families participate in the development of individualized service plans.  Families represent 51% of the boards of the REICs.  Through the system of procedural safeguards, families are provided a means to seek clarification or to question their child's services.  Parents are represented on the SICC and various task forces.  These existing opportunities will be enhanced by the additional of several other activities.  The EHDI Advisory Panel and the MCH Consortia will collaborate to sponsor focus groups for parents having a child with hearing loss.  The purpose of the focus group will be to discuss their experience of the EHDI process.  The MCH Consortia has extensive experience conducting focus groups.  SPAN and EI service providers will collaborate with the Consortia to recruit participants. 

Additionally, utilizing materials from the NCHAM website, the MCH Consortia will conduct surveys of parent satisfaction at the end of the second year of the grant.  The EHDI Advisory Panel will review the results and make recommendations for improvements in the process.

Goal 5:  All infants identified with hearing loss will receive appropriate medical and developmental intervention by six months of age.

5.1 By March 2006, 95% of children with hearing loss will be offered early intervention services by six months of age.

This objective is consistent with the Healthy New Jersey 2010 objectives.  The system is already in place to refer families to the intervention system.  Children identified with hearing loss must be registered with the SCHS Registry.  The SCHS Registry sends a copy of the registration form, within ten days of receipt, to the SCHS county case management unit in which the child resides.  The SCHS case management unit provides service coordination for Part C, early intervention services.  In New Jersey, any hearing loss is a presumptive eligible diagnosis to receive services.  EI provides families with unbiased information describing services and interventions available for children with hearing loss.

5.2  By March 2006, culturally competent and linguistically appropriate educational materials will be available on the EHDI process.

By December 2002, the EHDI audiologist will collaborate with SPAN and the EHDI Advisory Panel to research available objective literature, and develop literature, if necessary.  MCH Consortia will conduct focus groups to test the new literature.  By March 2006, objective materials will be available.

5.3 By December 2003, early intervention providers will be available to provide appropriate care for very young children with hearing loss. 

The Early Intervention Program will ensure EI providers receive preservice and inservice training to provide appropriate care for very young children with hearing loss.  EI has implemented a statewide Training and Technical Assistance Plan for the development and implementation of regional training and technical assistance plans.  The QA Specialist and EHDI Audiologist will work with the state Comprehensive System of Personnel Development Coordinator to ensure newborn hearing screening, diagnosis, and intervention is included in ongoing training sessions. 

Goal 6:  The EHDI Program will include an Advisory Panel with appropriate representation that provides ongoing guidance to the program.

6.1  By September 2002, an Advisory Panel will be convened, in accordance with New Jersey State Law.

EHDI staff will convene the EHDI Advisory Panel.  The panel will meet at least twice a year.  Committees will be created to address needs as they are identified.  The panel will review all aspects of the EHDI system, legislation and rules, screening, diagnosis, and intervention.  Additionally, the EHDI Advisory Panel will identify consumer and professional training seminars that are needed and develop an implementation

6.2  By December 2003, the Advisory Panel will have representation from stakeholders, including professionals involved in screening, diagnosis, follow-up, and education, families, and the deaf community.

This panel will include representatives from DHSS (EHDI Program, the Newborn Biochemical Screening Program, Family Centered Care, and Early Intervention), the Departments of Education, Human Services, and Banking and Insurance, the Commission for the Blind and Visually Impaired, audiologists, medical providers (e.g., pediatrician, family practice physician, neonatologist, geneticist and/or genetics counselor, and otolaryngologist/otologist), representatives from various professional organizations (e.g., AAP, ASHA), members of the deaf and hard of hearing community, and parents.  The panel will be structured to reflect the cultural, racial, and ethnic diversity of New Jersey's population. 

6.3 On an ongoing basis, the Advisory Panel will review literature for accuracy and ensure it is culturally sensitive and linguistically appropriate for New Jersey's populations.

As discussed earlier, the panel will review and recommend literature that is appropriate, comprehensive, and culturally competent.  Where the panel identifies gaps, they will ensure new literature is developed, tested, and published.

Goal 7: A statewide data management system will provide accurate information about program status and follow-up of babies needing EHDI services.

7.1 By December 2002, and continuing, facilitate development of the EHDI data system.

The data system is being developed by a CDC cooperative agreement.  The QA Specialist will collaborate with the EHDI Database Coordinator to create reports for each facility.  The EHDI audiologist will use data from the system to monitor hospitals for compliance with the hearing screening rules.

7.2 In conjunction with CDC-EHDI project, the data system will include the national EHDI data items.

The QA Specialist will collaborate with the Database Coordinator to make sure the data system will include the national EHDI data items.  The QA Specialist will participate on the data items committee of the CDC-EHDI project.

7.3 By March 2003, MCH Consortia will include hearing performance measures in their TQI project.

The MCH Consortia are legislatively required to establish a program for quality assurance that includes TQI.  They will add the EBC hearing variables to their efforts, as well as reporting children with hearing loss to the EHDI program and to the SCHS Registry.

7.4 On an ongoing basis, opportunities for data integration with other DHSS systems will be examined, and linkages will be made as appropriate.

As the EHDI tracking system is developed, the experience of the Newborn Biochemical Screening Follow-up Program (NBSP) will be used to guide the process.  Additionally, children who fail hearing screening will be matched to the biochemical database.  If a match is found, the NBSP staff will remind the physician of the failed hearing screening and the need for diagnostic testing.  The EI System is undergoing implementation of a coordinated information management system.  Once it is functional, IRB approval will be sought to link the EHDI data files with the EI data system.

11.  Evaluation Plan 

The EHDI database will be used to analyze outcome data for each hospital, and for the state.  Each month, listings of infants who failed screening but for whom follow-up forms have not been received by the EHDI Program will also be provided to each hospital.  The monthly reports will be used to identify areas of strengths and weakness.  The EHDI Advisory Panel and the MCH Consortia will also receive monthly outcome reports.  JCIH quality indicators will be used to evaluate success of the project.  Chart 11.1 lists the evaluation measure for each objective.