Maternal Child Health Bureau State Grant for Early Hearing Detection and Intervention (EHDI): New Hampshire

Title: New Hampshire Universal Newborn Hearing Screening Program
Grant No.
Grantee: New Hampshire Office of Community and Public Health
Project Director: Joan Ascheim, Chief, Bureau of Maternal and Child Health
Address: Office of Community and Public Health
Department of Health and Human Services
Health and Welfare Building
6 Hazen Drive
Concord, NH 03301-6527
Phone: (603) 271-4516 Fax: (603) 271-4519
Internet: jascheim@dhhs.state.nh.us
WWW site address: http://www.state.nh.us/dhhs/index.htm
Project Period: 4 Years
Budget Period From: 04/01/00 B03/31/01

The establishment of a statewide universal newborn hearing screening program will take place under the leadership of the New Hampshire Department of Health and Human Services, Bureau of Maternal & Child Health. The BMCH has the primary responsibility for maternal and child health services funded through the Maternal and Child Health Block Grant. The BMCH is directed by Joan H. Ascheim, MSN, who will also serve as the project director.

The primary purpose of the project is to develop a high quality, efficient, family-centered, and sustainable statewide universal newborn hearing screening program consistent with the intent, purpose, and goals of the grant guidance. The NHDHHS, BMCH will employ grant funds to carefully and purposefully design and begin implementation of a quality, statewide universal newborn hearing screening program. It is anticipated that by the end of the four years 50% of all newborns in the state will be screened and followed appropriately.

The problem of hearing loss is a significant public health issue. It is the most commonly occurring congenital disability in United States with a rate of 3 to 6 hearing impaired infants per 1000 live born infants. Conservative estimates anticipate that there are approximately 30 to 40 hearing impaired infants born in New Hampshire every year.

Currently, approximately 20% of newborns in the United States are screened for hearing. In New Hampshire, the percent of newborns being screened is unknown, as there is no universal screening program or central data tracking system. Two of New Hampshire's 24 birthing hospitals conduct universal newborn hearing screening and three hospitals screen infants with high-risk indicators. Acknowledging that only 50% of infants with hearing loss have identifiable risk factors, a universal screening program is needed for the state

In the United States, the average age of diagnosis of hearing loss is 2 1/2 to 3 years of age with many children unidentified until 5 or 6 years of age. The consequences of late detection are significant and can result in lifelong communication, social, psychological, behavioral, and educational problems.

The goal of the grant is to develop and implement a statewide, sustainable, family-centered universal newborn hearing screening program that identifies all newborns with significant hearing loss and enrolls them in a program of early intervention by age 6 months.

The program objectives are organized into four major areas including: screening, tracking and follow-up, identification and intervention, professional and public education. Major objectives include:

By September 2005, a minimum of 80% of infants born in New Hampshire birthing hospitals will be screened for hearing loss.

By September 2004 all participating screening hospitals will have a false positive screening rate of less than 3% and a false negative rate of 0%.

By September 2004 all participating screening hospital will have a referral rate of not greater than 4 %.

By December 2001 a minimum of 95% of those infants screened will receive appropriate follow-up.

By September 2005, 95% of infants with significant congenital hearing loss born in hospitals participating in the universal newborn screening program will be identified by 3 months of age.

By September 2005, 95% of infants with significant congenital hearing loss born in hospitals participating in the universal newborn screening program shall have appropriate and necessary.

The project approach is a deliberate planning process, moving toward thoughtful and calculated program implementation. This will be realized by hiring highly qualified staff, program planning and development, data collection, analysis, and quality assurance. The director of MCHB, a project coordinator, a consulting audiologist, and a consulting information systems specialist will work with the project advisory committee to carefully plan a high quality, family centered program. Together they will develop screening protocols, clear hospital guidelines, a training plan for staff, a communication plan for sharing screening and diagnostic results, and an Early Hearing and Detection Intervention (EHDI) data system prior to program implementation. These efforts will assure that screening is conducted accurately, results are shared appropriately, all screenings are tracked and recorded, and all key outcomes are measured.

The methodology for determining if the objectives are met is through the design or purchase and implementation of the EHDI data system. The EHDI will track basic information on all infants screened as well as expanded information on diagnostic data, referral status and infants receiving assessment and follow-up services. In addition the EHDI will generate reports on outcome data such as, numbers and percentages of infants screened, rescreened, missed or lost to follow-up, referred for further audiological assessment and found to have confirmed hearing loss.

The leadership of the Bureau of Maternal and Child Health, within the New Hampshire Department of Health and Human Services, will develop a high quality, efficient, family-centered, and sustainable statewide universal newborn hearing screening program. Conservative estimates anticipate that there are approximately 30 to 40 hearing impaired infants born in New Hampshire every year; without a statewide program, many of these infants will not benefit from early amplification and intervention services. The major objective for this project is to screen and follow appropriately at least 50% of all newborns in the state by the end of four years. Other objectives are organized into four major areas including screening, tracking and follow-up, identification and intervention, professional and public education. Project staff and an advisory committee will develop screening protocols, clear hospital guidelines, a training plan for staff, a communication plan for sharing results, and a data system prior to program implementation in order to assure that screening is conducted accurately, results are shared appropriately, all screenings are tracked and recorded, and all key outcomes are measured.

The overall purpose of this project is to develop, under the leadership of the New Hampshire Department of Health and Human Services, Bureau of Maternal and Child Health (NHDHHS, BMCH) a high quality, efficient, family-centered and sustainable statewide universal newborn screening program consistent with the intent, purpose and goals of the grant guidance. The rationale and approach for carrying out such a program are described in the following program narrative.

The problem of hearing loss is a significant public health issue. It is the most commonly occurring congenital disability in United States with a rate of 3 to 6 hearing impaired infants per 1000 liveborn infants. The prevalence of hearing impairment far exceeds that of other childhood diseases for which routine and selective screening is conducted. Annually, 24,000 infants in the United States are born hearing impaired contrasted with 2,000 born with cystic fibrosis, 800 with sickle cell disease, 800 with hypothyroidism, and 400 with PKU.

Currently, approximately 20% of newborns in the United States are screened for hearing loss. In New Hampshire, the percent of newborns being screened is unknown, as there is no universal screening program or central data tracking system. Two of New Hampshire's 24 birthing hospitals conduct universal newborn hearing screening and three screen infants with high-risk indicators. Acknowledging that only 50% of infants with hearing loss have identifiable risk factors, a universal screening program is needed for the state

Conservative estimates anticipate that there are approximately 30-40 hearing impaired infants born in New Hampshire every year. Without a statewide program, many of these infants will go undiagnosed until older and will not benefit from early amplification and intervention services.

The need for universal newborn hearing screening has been endorsed and promoted by a host of prestigious national organizations. The American Academy of Pediatrics, National Institutes of Health (NIH), American Academy of Audiology, and the Joint Committee recommend that all children with congenital hearing loss be identified prior to 6 months of age. The 1993 Consensus Panel convened by NIH similarly concluded that all infants be screened for hearing impairment and those failing receive a comprehensive evaluation no later than six months of age. The "Healthy People 2010" related goal calls for identification of all newborns with significant hearing loss and subsequent enrollment in a program of early intervention by age 6 months. The New Hampshire Pediatric Society led Task Force on Universal Newborn Hearing Screening has spearheaded the effort to bring a universal newborn hearing screening to New Hampshire.

The evidence for undertaking such a program is clear and convincing. When properly conducted, newborn screening programs are accurate and have better positive predictive values when compared with widely accepted screening programs such as PKU and mammography Utilizing current technology and screening protocols, referral rates as low as 2-3% can be achieved. The cost for each child identified with congenital hearing loss is estimated to be one tenth that per child identified with sickle cell, PKU, or hypothyroidism. Cost savings in special education dollars per child identified early can be as much as $421,000 by the time that child graduates from high school.

By far the most compelling evidence for implementing a universal screening program is the benefits for the identified child and his or her family. Remarkably, infants can be fitted with amplification devices as young as 4 weeks of age. With appropriate intervention, these children are likely to display normal cognitive, language and social development. Studies have shown that, by first grade, children receiving intervention prior to six months of age are 1-2 years ahead in cognitive, language and social development when compared with those receiving services after six months of age. In light of such findings the implementation of a universal newborn hearing screening program is imperative.

This application is being submitted as a combined planning and implementation grant. With project staff as proposed, a project advisory committee, a partnership with Dartmouth-Hitchcock Medical Center and technical assistance from our New England colleagues in maternal and child health and the national technical assistance centers, the NHDHHS, BMCH will employ grant funds to carefully and purposefully design and begin implementation of quality, statewide universal newborn hearing screening program. A survey of birthing hospitals in the state found they are in varying stages of readiness to initiate screening. Rather than pilot a few demonstration sites, it is our intention to move all hospitals toward full implementation. It is anticipated that by the end of the four years 80% of all newborns in the state will be screened and followed appropriately.

The anticipated benefits of this grant are early identification of children, the establishment of a responsive quality screening and Intervention program, cost savings, and developmental gains for children as described In section 3. above. Additionally, we believe families will benefit greatly from the advantages such a program affords children who are identified early and receive appropriate intervention.

The BMCH is well positioned to take the leadership role in the planning and implementation of a universal newborn hearing screening program in New Hampshire. For over twenty years, the BMCH has coordinated the statewide Preschool Vision and Hearing Screening Program. Developed with technical expertise from a Hearing and Vision Advisory Committee, this program utilizes screening protocols to screen 3,4, and five year olds for vision and hearing problems. The program coordinator and countless trained community volunteers screen children for hearing impairment using screening equipment for acuity and tympanometry. Re-screening is conducted as appropriate. Referrals on failed re-screening are made to the child's medical home and follow-up results are obtained from the medical provider. Should the medical provider or family need assistance in locating specialists or making referrals to otolaryngologists, audiologists or other state programs for the hearing impaired the coordinator does so. Thus the BMCH has experience in screening, tracking and case management for preschool children identified as having hearing loss.

Additionally, the BMCH can call on the expertise and assistance from its sister organization, the Special Medical Services Bureau (the CSHCN agency). Since 1982, the Special Medical Services Bureau has been responsible for the statewide Newborn Screening Program. This involves testing of all newborns statewide for various metabolic diseases. Other components of this program include tracking of this data and initiating follow up with primary care providers to assure repeat testing as well as facilitating interventions where indicated for those newborns who test positive. The state also provides a quality assurance component to this program. The BMCH will seek advice from this program as the model for the universal newborn hearing screening program is developed.

The Special Medical Services Bureau is also responsible for the New Hampshire Cleft Lip and Palate Program. Through this program the clinical nurse coordinator provides outreach to all the birthing hospitals in New Hampshire at the time of the birth of a child with a cleft. This activity has been timely and helpful to both hospital staff and families in providing support and information around the issue of the cleft. This coordinator also facilitates linkage to the specialty care needed for this child as a result of the cleft. This relationship with hospitals throughout New Hampshire is strong and valued and will provide the basis for the development of a parallel system around newborn hearing needs.

Additionally, the Special Medical Services Bureau is responsible for the hearing preservation program within New Hampshire. This program provides financial assistance to children in New Hampshire from birth to age twenty-one who are in need of specialty care around hearing issues. It is a recognized fact that many insurances do not fund hearing aids and thus families who may have access to funding for evaluation and assessment often do not have funding for the recommended intervention (i.e. a hearing aid). Audiologists throughout the state refer children to this department for assistance with funding of this need. A nurse coordinator serves as the contact for this program and works directly with the family to assure that the need is met. Children identified through the newborn hearing screening programs would likewise be eligible for assistance in obtaining funding for hearing aids.

The BMCH was also responsible for obtaining initial funding for the development and implementation of the Childhood Lead Poisoning Prevention Program. This experience in program planning and implementation, tracking, and case management has many parallels from which we can draw in the establishment of this program.

The Bureau of Maternal & Child Health is housed within the Office of Family and Community Health, Office of Community and Public Health within the New Hampshire Department of Health and Human Services. Organizational charts are attached as Appendix 1. The BMCH has historically been devoted to administering health programs and services for women and children and it is supported in part by Title V funds. The BMCH is organized under the direction of Joan H. Ascheim, MSN, the Bureau Chief who has been with the BMCH since 1983. Ms. Ascheim will serve as the universal newborn hearing screening project director and supervise the project coordinator, to hired.

The Office of Community and Public Health houses many programs that will be instrumental to the success of the universal newborn hearing screening program. The Medicaid Administration Bureau and Managed Care Unit will be consulted when issues relative to payment of necessary services are explored. The Office of Epidemiology and Vital Statistics oversees the electronic birth certificate, known as Vital Records Vision 2000. This unit will be an important partner as we work towards including newborn screening results on the electronic birth certificate.

Other new initiatives in the BMCH will complement this planning and development process. In collaboration with the Bureau of WIC Nutrition Services, the BMCH is initiating a data collection system to describe the incidence of neural tube defects in New Hampshire. This initiative will also look toward the electronic birth certificate as one means of data collection. Combined, the universal newborn screening program and the neural tube defect project begin the process of linking data sets for the maternal and child population. Staff in these two projects will work under the direction of an MCH epidemiologist to be hired under the SSDI grant, who will examine the feasibility of expanding maternal and child health data linkages similar to that of the KIDS Net Program in Rhode Island.

The Part H program sits within the Office of Family Services, Division of Developmental Services of the NHDHHS. Staff from Part H participate on advisory committees for two existing BMCH grants and have agreed to participate on the task for this program as well. They will be key players in the development of services for families that may not yet exist and coordination with early intervention services for those that do exist.

The Bureau of Maternal & Child Health will provide in-kind resources in the form of 5% of Joan H. Ascheim's time as director ($2,800 ). Additionally, office space, telephone and supplies for program staff will be provided by the Bureau. Support staff time estimated at 20% time ($5,067) will be allocated to this project.

The Dartmouth-Hitchcock Medical Center (DHMC) staff, as founding members of the Task Force on Universal Newborn Hearing Screening, has been carrying out much of the work-to-date on the development of a statewide screening program and will be a key partner and resource for the program. They created and analyzed the survey utilized for needs assessment cited in this application. Additionally, they have been working in-kind to create a computerized monitoring and tracking system to be assessed for possible utilization by the statewide program (see Goals and Objectives B section on Data and Tracking.). Three vital DHMC staff including Judith Frank, MD, Professor of Pediatrics Dartmouth Medical School and Acting Medical Director of the Children's Hospital at DMHC, Victoria Flanagan, RN Outreach Nurse ChaD (Children's Hospital at Dartmouth)/Obstetric Regional Services, DMHC and Tammy Weiner, Quality Education, Measurement and Research Associate, DMHC are carrying out this work. Ms. Weiner will devote one day per week to this project accounting for a $4,400 contribution to the project. Dr. Frank and Ms. Flanagan will each devote 5% time to this project accounting for $9,573 and $3,715 in in-kind contributions.

Not to be underestimated is the in-kind time to be invested by project advisory board members (see Collaboration and Coordination) many of whom have already given hours to the early development of this initiative through the Universal Newborn Hearing Screening Task Force. Each individual brings to the table their particular expertise, which is critical to shaping a program for New Hampshire.

The target population for a statewide universal newborn hearing screening program will include all approximately 14,0000 infants born annually in the state of New Hampshire. Special outreach will be required for those approximately 100 infants born at home who would not have access to screening afforded to those infants born in hospitals. This same situation exists with newborn metabolic screening. Systems will need to be devised to provide outreach and education to parents of these infants, to refer them to the closest screening site, and to track whether or not screening is actually conducted. Outreach for these infants can be done through lay midwives who carry out most planned home births in the state.

On the screening side there may be hospitals that are unable to identify resources for the necessary equipment and staff to conduct the screening as noted in the needs assessment. Should screening become mandatory through legislation, hospitals would have to identify funds to establish a program. Regardless of whether or not screening is mandated the BMCH will endeavor to direct hospitals to potential sources of funding to meet their financial needs for newborn hearing screening.

We estimate that approximately 30-40 infants are born in New Hampshire each year with some degree of hearing loss. Once children are identified through screening they will need to be referred to an audiologist for further diagnostic evaluation and intervention. There is currently a shortage of audiologists who have the particular skills to provide these services to infants. During the planning phase of the project, staff along with the advisory committee will need to determine the most efficacious means of addressing this issue. It may require additional training of audiologists, utilizing the project consulting audiologist, or arranging for families to travel to DMCH where there is an audiologist with appropriate skills. As stated in the booklet, Implementing Universal Newborn Hearing Screening Programs, delaying the implementation of a screening program until diagnostic and intervention systems are in place is unwarranted. The demand for such services will likely hasten the supply of qualified audiologists in the state.

Another anticipated barrier to providing appropriate intervention relates to the payment for amplification devices. Not all insurance companies pay for hearing aides and Medicaid frequently will pay for an amplification device, but not necessarily the particular one recommended due to the associated costs. The Special Medical Services Bureau can provide financial assistance for families who meet their income eligibility requirements. The issue of Medicaid nonpayment for certain amplification devices can be addressed by the project advisory committee.

In July of 1998 a the Task Force on Universal Newborn Hearing Screening was convened by Jane Hybsch, MHA, RN, Director of Special Medical Services Bureau and Judith Frank, MD, Chair of the New Hampshire Pediatric Society's Committee for the Fetus and Newborn. Task Force Members consisted of physicians, nurses from all of the 24 hospitals with maternity services within the state as well as audiologists, legislators, educators, and parents of deaf infants. The Task Force met 3 times between July 1998 and May of 1999 to identify strategies and barriers to implementing UNHS.

In addition to the Task Force meetings, the Special Medical Services Bureau and the DMCH partners developed and distributed a survey to determine the status of UNHS in each of the 24 birthing hospitals in New Hampshire. Results of this survey indicate that only two of the 24 New Hampshire birthing hospitals currently have universal newborn hearing screening programs.

Of the ten responding hospitals lacking screening programs, four reported that they would start a program in 2000, one planned to start by the end of 1999, one planned to start in 2001 and four had no specific plans to initiate a program. Only three hospitals have budgeted for the equipment necessary to perform screenings. None of the hospitals surveyed had received any type of assistance from service organizations or hospital auxiliaries to support their screening programs. The following specific needs were identified:

The survey results have also indicated that a successful statewide program could be developed if such a program incorporated the methods and protocols of the two successful programs that already exist in New Hampshire. Both Elliot Hospital in Manchester, New Hampshire and Parkland Medical Center in Derry, New Hampshire currently conduct UNHS. Parkland Medical Center has been screening infants for eight months and Elliot Hospital has been screening infants for 3 2 years. Both programs have indicated that a two-stage screening protocol is ideal for a successful program. If an infant does not pass the initial screening test, each hospital administers an additional screening test before referring the infant for diagnostic evaluation. A statewide UNHSP administered by the BMCH will work with existing and new programs in implementing and refining effective screening protocols.

In addition, both Elliot Hospital and Parkland Medical Center use Automated Auditory Brainstem Response (AABR) screening equipment to screen all newborns. Since the test can be administered by trained volunteers and has a false positive rate of approximately 4%, the statewide UNHSP will recommend that each birthing hospital use AABR equipment to screen infants.

The information gleaned from this survey has been used to develop the plan in this proposal.

Much of the collaboration and coordination required by this project will initiate through the project advisory committee to be convened early in the project. It will be staffed by the Bureau of Maternal & Child Health. The project advisory committee will include those on the Universal Newborn Hearing Screening Task Force (Appendix 2). To be added to the advisory committee will be Part H staff, staff from the Institute on Disability at the University of New Hampshire (a University Affiliated Program), staff from the MICE Program (Multi-Sensory Intervention through Consultation and Education) staff from the DHHS Bureau of Vital Records, parents, family practice providers, professionals working with deaf and hard of hearing, individuals representing the deaf and hard of hearing community, an otolaryngologist, representatives from the insurance industry and a representative from the Department of Education.

Once convened, the project advisory committee will determine whether or not it will need to break into subcommittees to address the various key aspects of the program including: screening, tracking and follow-up, identification and intervention, professional and public education, and evaluation.

Key among the list of project advisory committee members are parents, representatives of the deaf community and medical home providers. It is critical that all care for identified children be coordinated with the child's primary care provider. Representatives of the primary providers on the advisory committee can assist in developing the plan for communication between the screening project staff, primary care provider, specialists and the family. Family members and members of the deaf community can assist in creating a family-centered program which is sensitive to the anxiety that is produced when a positive screening occurs. Further they can help design an intervention program that best meets the needs of families.

As mentioned in the Available Resource section above, DHMC is a key partner in this initiative. In her role of Outreach Nurse ChaD/Obstetric Regional Services, Ms. Flanagan meets quarterly with the maternal and child nurse managers from the 24 birthing hospitals in the state. Many of these managers would be the person responsible for overseeing the newborn hearing screening program in their hospital. This connection will facilitate excellent communication and collaboration and provides an opportunity for training and education for the nurse managers.

The Special Medical Services Bureau, a key partner in this project, has been and continues to be a leader in serving children in New Hampshire with special health care needs. It is anticipated that with the development of a statewide Universal Newborn Hearing Screening Program the Special Medical Services Bureau will continue to develop and enhance the partnerships with those key individuals within the state who also serve this population. This includes collaborative partnerships with Primary Care Providers around the state, birthing hospitals statewide and Part H providers including Early Interventions and schools.

The Special Medical Services Bureau also has developed collaborative relationships with audiologists throughout the state in order to serve children from birth to twenty-one years of age who have hearing needs. These relationships are already in place and will be further developed by the presence of a Universal Newborn Hearing Screening Program in New Hampshire.

Project Goal. The overarching goal of the this grant is based on the related Healthy People 2010 goal:

To develop and implement a statewide, sustainable, family-centered universal hearing screening program which identifies all newborns with significant hearing loss and enrolls them in a program of early intervention by age 6 months.

Project Objectives B Objectives are organized into four major areas including: screening, tracking and follow-up; identification and intervention; and professional and public education. Targets used in setting objectives are based on those outlined in the AAP Taskforce Statement on Newborn and Infant Hearing. They also assist us in addressing the MCH Block Grant Performance Measure, "Percentage of newborns who have been screened for hearing impairment before hospital discharge."

By September 2005, a minimum of 80% of infants born in New Hampshire birthing hospitals will be screened for hearing loss.

By September 2004 all participating screening hospitals will have a false positive screening rate of less than 3% and a false negative rate of 0%.

By September 2004 all participating screening hospital will have a referral rate of not greater than 4 %

By September 2001, a training plan for training hospital staff will be completed.

The primary initial activities of the grant are to hire appropriate staff to carry out these and all other objectives. The BMCH will create a new position and hire an individual to serve as project coordinator to oversee all aspects of the project. At the same time we will be recruiting for a consulting audiologist and information systems specialist. These three individuals will comprise the staff at the state program.

The above objectives rely on hospitals procuring the necessary screening equipment, training staff to utilize equipment properly, and documenting results of screening and submitting them to the statewide program for monitoring. The state program will recommend that hospitals purchase Automated Auditory Brainstem Response (AABR) equipment for their programs. The rationale for this recommendation is that this screen can be administered by trained volunteers and has referral rates of 2-3%, which is lower than other screening methods. This new program has the benefit of learning from neighbor states such as Rhode Island that has brought its referrals rates down considerably since their program started. Additionally, the national centers for technical assistance on newborn hearing screening provide a wealth of information to guide us in keeping false negative and positive screening rates to a minimum.

A quality assurance plan will be developed to monitor the progress in meeting these objectives.(see objectives, Tracking and Follow-Up).

The consulting audiologist, the project coordinator, the project information systems specialist, and the DMCH staff will collaboratively develop a training plan. The plan will delineate the respective roles and responsibilities of the state staff, the hospital staff, and the DMHC staff in assuring that screening staff is adequately trained. While it is our understanding that the representatives of the equipment manufacturer's provide training on the equipment, there needs to be a plan to account for staff turnover and to meet any additional training needs which go beyond the initial training. The information systems specialist will be responsible for the training plan relative to computer tracking.

By June 2001, screening protocols and guidelines for participating hospitals will be completed and disseminated.

One of the first tasks of the coordinator in collaboration with the consulting audiologist will be to collect and review screening protocols and hospital program guidelines developed by other state programs. In addition the literature will be reviewed to be sure the recommended protocols are based on the most recent data available. The hospital program guidelines will address issues such as informed consent, screening procedures and personnel requirements, timing for and designating responsibility for documenting and communicating screening results, and developing and carrying out a quality assurance plan. Once drafted, the guidelines will be reviewed and endorsed by the project advisory committee. The project coordinator will work with the project advisory committee and Ms. Flanagan and Dr. Frank from DMCH to share this information with the participating hospitals through meetings convened with the nurse managers. Other potential forums for sharing the guidelines for hospitals are meetings with the New Hampshire Hospital Association and the New Hampshire Pediatric Society.

By June 2001, develop a communication plan for relaying screening results between the hospital, audiologists, the child's primary care provider, early intervention providers, parents and the state screening program.

Developing a feedback loop between these entities is critically important to the success of a program. How parents receive the information about whether or not the child has passed a screening needs to be determined. It is likely that each hospital will need to determine how they will provide this information to the parents. It may be that the physicians at that hospital want to provide the information directly to parents. The project staff along with the project advisory committee can assist hospitals in developing a communication plan by providing them with guidance as to the issues to be addressed. The National Center for Hearing Assessment and Management has both audiovisual and written materials that can be used in informing parents about newborn hearing screening. The project staff will obtain these materials to share them with the hospitals.

By June 2001, assist hospitals to identify funds for equipment and other program costs to begin universal newborn hearing screening.

The costs of a newborn hearing screening program are highly variable based on factors such as the type of screening equipment purchased, costs of associated screening supplies, numbers of babies to be screened, available computer equipment and staffing issues. New equipment costs can range from $5,795 - $25,000. The project staff will provide new programs with cost and screening information to assist them in selecting the most appropriate equipment. While it is unlikely that the project can provide any direct financial assistance to purchase equipment, staff will provide information about potential funding sources and timelines for grant submissions. Project staff will also provide the interested hospitals with a boiler plate grant proposal to use in approaching funding sources such as service organizations and local private foundations. Such a proposal will describe the efficacy of such programs, costs, and cost savings.

Additionally, project staff will research the various insurers in the state to determine the level of reimbursement for screening newborns for hearing loss.

By December 2000, the project advisory committee will meet and will continue to do so on quarterly thereafter.

The project advisory committee will be convened by December 2000 at the latest, once project staff is on board. Members of the project advisory committee are described in the section on coordination and collaboration. In addition letters of support from several members committing to their participation can be found in Appendix 3. This committee will be the sounding board for the grant. The diverse membership of professionals and parents will review all drafted protocols and guidelines and provide feedback on program direction to assure that the program is sound from a clinical perspective as well as family-centered.

By December 2001 a minimum of 95% of those infants screened will receive appropriate follow-up.

By December 2001, the New Hampshire Early Hearing and Detection Intervention data system will be fully functioning.

By December 2001, create a system for quality assurance as part of the New Hampshire Early Hearing and Detection Intervention database to monitor screening, identification, referral and intervention.

By December 2001, all participating hospitals will have a quality assurance plan in place to monitor screening performance.

By June 2002, an annually thereafter, a report shall be produced documenting the programs success in screening, identifying, and providing appropriate intervention for children with hearing loss.

The achievement of this set of objectives will primarily be the responsibility of the project information systems specialist and is highly dependent on the implementation of an Early Hearing and Detection Intervention data system. It is anticipated that this system will be linked with and initiated by the electronic birth certificate, a component of Vital Records Vision 2000. The vision is that the results of hearing screening will be documented on the infant's birth certificate and received by the state screening program.

DHMC has been developing a computerized monitoring and tracking system for the statewide program. The information systems specialist will be the key individual to work on the linkage of the electronic birth certificate and the tracking system, which together will become the Early Hearing and Detection Intervention (EHDI) data system. Should this tracking system not meet all the program needs, the information specialist will research existing tracking systems which may be available for purchase, such as the HI*TRACK software from Utah or the OZ Corporation SIMS Program. We believe it is advantageous to have a systems person make decisions about software applications rather than make that decision at the time of this submission. The information specialist will assure that the EHDI can track basic information on all infants screened as well as expanded information on diagnostic data, referral status and infants receiving assessment and follow-up services. In addition the EHDI, when fully functioning, will generate reports on outcome data such as, numbers and percentages of infants screened, rescreened, missed or lost to follow-up, referred for further audiological assessment and found to have confirmed hearing loss. These reports will provide descriptive information about the program as well as serve as the basis for the quality assurance and evaluation of the statewide program.

The information systems specialist will integrate all the systems necessary to gather the outcome data listed above, including: the hospital screening information, follow-up information from primary care providers, diagnostic data from audiologists and intervention data from early intervention providers.

The information systems specialist will be the primary liaison with the participating community hospitals in providing training and technical assistance to them in launching and utilizing the software application selected for the EHDI.

The information systems specialist will work with the project coordinator, consulting audiologist and the project advisory committee to develop a quality assurance plan for the participating hospitals. The EHDI will be an integral component of this plan providing feedback on feedback on false positive and negative and referral rates. Each hospital will be responsible for implementing a quality assurance plan to improve on any rates below the targets.

By June 2002, the project will have been in existence for 2 years and will have at least one year of data from the participating hospitals. The information systems specialist will analyze all available data and trends to report on program activity and successes or limitations in meeting the screening and follow-up objectives. The report will be presented to the advisory committee and program modifications will be made as necessary.

By September 2005, 95% of infants with significant congenital hearing loss born in hospitals participating in the universal newborn screening program will be identified by 3 months of age.

By September 2005, 95% of infants with significant congenital hearing loss born in hospitals participating in the universal newborn screening program shall have appropriate and necessary intervention initiated by 6 months of age.

By September 2001, develop a resource guide of professionals skilled in the identification and intervention of significant hearing loss in young infants.

By December 2001, develop a plan for a rational approach to the provision of expert services for young infants with significant hearing loss.

By September 2001, develop a system of case management for young infants with significant hearing loss.

It is well recognized that the identification or diagnostic evaluation of and the provision of appropriate intervention for infants with significant hearing loss requires audiologists and early intervention providers with specific expertise and skills. It is not currently known how many audiologists in the state possess this expertise and if they are geographically accessible in throughout the state. Thus project staff will survey audiologists throughout the state to create a data base and resource guide listing those that have the skills to work with infants. It will be necessary to periodically update this resource.

Anticipating that there are areas of the state lacking such expertise, a plan will be developed to make the best use of the audiological resources that do exist. This may take the form of providing or arranging transportation for families to access the closest audiologist. Alternatively, the project consulting audiologist may travel to different sites to provide direct service to those children who have a positive hearing screen. Finally, a plan to provide or arrange for training of audiologists to provide this expert care may be developed. It is possible that a plan including all three components will be put forth. This plan will be developed in collaboration with the advisory committee to assure that the voices of parents and professionals from various parts of the state are heard.

In regard to the provision of early intervention for identified children, there are two primary providers of service in the state that possess the required expertise and have the capacity to deliver it. First is the MICE or the Multi-Sensory Intervention through Consultation and Education Program. This is a state-wide program specializing in the provision of developmental and educational interventions for children birth to age three. The program has long maintained that children with hearing impairment are not identified early enough to avail themselves of this service. The MICE program will participate on the advisory committee, be a key point of referral for children and their families and assist in devising the plan for service delivery.

Early Supports and Services (Part H) is the other provider of services to children with identified needs birth to age 3. However the MICE program will likely serve any children with sensory impairments and the Early Supports and Services program those children with sensory impairments and any additional developmental needs. The Early Supports and Services program will also serve on the advisory committee and participate in the plan for intervention services so that they be well coordinated. Both the MICE and Early Supports and Services program will be listed in the data system and resource guide to be developed.

In order to assure that children are provided services in a timely manner a system of case management must be developed. There is a clear link between case management and the EHDI data system. The project coordinator will become aware of identified children through the electronic birth certificate. The project coordinator will communicate with the child's primary care provider and the family to be sure identification and intervention take place in a timely manner based on the targets set in objectives 3.1 and 3.2 above. As stated in Objective 1.6, a communication plan shall be devised to assure that communication takes place in a manner that best meets the needs of the parent and the child's primary care provider. The Special Medical Services Bureau provides case management services for families in many of its programs including the Newborn Metabolic Screening Program, the Cleft Lip and Palate Program and others. Staff from these programs will provide their expertise through the advisory committee and on an ad hoc consultation basis to the Universal Newborn Screening Project staff. The project advisory committee will also assist in the development of this case management system. The EHDI data system will monitor whether or not the targets in the above objectives are met.

By August 2001, implement a plan to inform professionals regarding the initiation of universal newborn screening.

This will be accomplished through face-to-face contact with professionals and dissemination of written materials. The National Center for Hearing Assessment and Management Implementation Guide Appendix lists a host of materials other states have used in providing information to professionals about the benefits of screening and to describe their program. Project staff will collect samples of what other states have used and present a recommendation to the advisory committee of materials to use or adapt for New Hampshire. Materials will be mailed to professionals including pediatric providers, family practice providers, obstetricians, lay midwives, hospitals, community health centers, maternal and child health programs, parent advocacy groups, early intervention programs, and audiologists at a minimum. In addition, project advisory committee members will be asked to disseminate materials at meetings with their constituents and to put the information in newsletters of their respective organizations.

Our DMHC partners will play a pivotal role in educating professionals through their direct links with the nurse managers of the state birthing hospitals and their other contacts through their Perinatal Outreach Program.

By August 2001, implement a plan to inform parents about the benefits of universal newborn screening.

The National Center for Hearing Assessment and Management Implementation Guide Appendix also lists a number of parent education materials to inform them of the benefits of universal newborn hearing screening. The project coordinator will obtain and review these materials for presentation to the advisory committee for their review and critique. The advisory committee will also assist in the development of a dissemination plan for these materials.

The resources required to accomplish the goals and objectives of this project are funds to hire a full-time project coordinator, a consulting audiologist at 33% time, and a half-time information systems specialist to design or adapt an Early Hearing and Detection data system. Computer and office equipment are requested for these three new staff members. Minimal funds are requested for screening equipment for the new participating hospitals in the first two years of the grant. The equipment needs of the hospitals will far exceed this amount and the project staff will assist in locating potential resources for funding. Resources requested through this grant for the four years are $100,000 in year one and two, $102,229 in year three and $104,252 in year four for a total request of $404, 881. The increases reflect salary adjustments during the project period. We pledge our assurance that grant funds will be used only for purposes specified in the grant and that necessary fiscal and accounting procedures will be followed.

The project approach is that of a deliberate planning process, moving toward thoughtful and calculated program implementation. This will be realized through the hiring of highly qualified staff, program planning and development, data collection and analysis, and quality assurance.

The Bureau of Maternal & Child Health under the director of its chief, Joan H. Ascheim, will manage the project. The project team will be comprised of three key staff, to be hired; the project coordinator, a half-time consulting audiologist and a half-time consulting information systems specialist.

The staff will work in collaboration with the project advisory committee to carefully plan a high quality, family centered program. The importance of the project advisory committee and the contribution of the individual members cannot be overstated. This is where the project will obtain the perspective of families and the deaf community, technical advise from experts, feedback on program implementation in the participating hospitals, the views of primary care providers and providers of early intervention services. Involving all of these stakeholders in the planning process will make for stronger, more responsive program.

The development of screening protocols, clear hospital guidelines, a training plan for staff, communication plan for sharing screening and diagnostic results and the development of a EHDI data system prior to program implementation aims to assure that screening is conducted accurately, results are shared appropriately and all screenings are tracked and recorded.

The creation of a resource guide of audiologists and intervention providers, a plan for service provision and case management all seek to guarantee that hearing impaired infants receive the necessary services in a time sensitive manner so that they can realize their developmental potential.

Finally, the design (or purchase of an existing system) and implementation of the EHDI data system will allow for the measurement of all key outcomes, time frames, and continuous program monitoring. When fully functioning the EHDI along with each participating hospital's individual quality assurance plan will determine whether or not the project is a quality one.

In order to evaluate the impact and the effectiveness of the project we must be able to measure whether or not we have met the following selected objectives:

By September 2005, a minimum of 80% of infants born in New Hampshire birthing hospitals will be screened for hearing loss.

By September 2004 all participating screening hospitals will have a false positive screening rate of less than 3% and a false negative rate of 0%.

By September 2004 all participating screening hospital will have a referral rate of not greater than 4 %

By December 2001 a minimum of 95% of those infants screened will receive appropriate follow-up.

By September 2005, 95% of infants with significant congenital hearing loss born in hospitals participating in the universal newborn screening program will be identified by 3 months of age.

The methodology for determining if these objectives were met is through the design (or purchase of an existing system) and implementation of the EHDI data system. As previously mentioned, the EHDI will track basic information on all infants screened as well as expanded information on diagnostic data, referral status and infants receiving assessment and follow-up services. In addition the EHDI, will generate reports on outcome data such as, numbers and percentages of infants screened, rescreened, missed or lost to follow-up, referred for further audiological assessment and found to have confirmed hearing loss.

While the objectives and targets are written for future years to measure success, once EHDI is operating, reports will be run on at least a quarterly basis to measure progress over time toward meeting this objectives. Annual reports will be produced documenting progress toward meeting the above objectives. Reports will examine the data for the state and the individual hospitals with feedback provided to the hospitals. As already stated these data will form the foundation of the statewide and individual hospital quality assurance plan. Hospitals will need to develop improvement plans to state how they will seek to improve on false negative and positive screening rates.

In order to evaluate the efficiency of project and if we met the remaining objectives we will develop a timeline for completion of tasks. The project coordinator will be responsible for monitoring this timeline and reporting on progress toward meeting deadlines to the project advisory committee.