Maine CDC EHDI Grant (2001)

GRANT ABSTRACT

Cooperative Agreement for Early Hearing Detection and Intervention Tracking, Research, and Integration with Other Newborn Screening Programs - Level I

Project Abstract: Maine Newborn Hearing Program
Applicant Organization: Bureau of Health, Maine Department of Human Services
Address: 11 State House Station, Augusta, Maine 04333
Project Director: Ellie Mulcahy, RNC Phone: (207) 287-4623

The Bureau of Health, Maine Department of Human Services is seeking a cooperative agreement from the Centers for Disease Control and Prevention to establish a statewide surveillance and tracking program for Early Hearing Detection and Intervention for the State (Level 1). Currently, only thirty nine percent of newborns in Maine have access to hospital based newborn hearing screening. As there is no centralized surveillance system, it is unknown how many newborns are actually screened, receive audiologic diagnostic evaluation or intervention services. .

The overall goal of this initiative is to assure Maine infants, children and their families have access to early hearing detection and intervention services. Surveillance of these activities will provide data for planning of programs and services, evaluation of the Maine Newborn Hearing Program (MNHP), and for research related to hearing detection in newborns. The objectives of the first year of this initiative therefore, are to:

• develop and implement a surveillance and tracking system and integrate this with other MCH data systems,
• develop and institute a reporting system for hospitals and audiologists and
• increase access to pediatric audiologic diagnostic evaluation, intervention and services.

The Newborn Hearing Program will be administered by the Genetics Program, within the Bureau of Health. The Genetics Program will work in collaboration with the University of Maine, Department of Communication Sciences and Disorders, the Maine Academy of Audiology, birth hospitals, pediatric care providers, audiologists, the Department of Education, Baxter School for the Deaf, Early Childhood and Family Services Program and other Bureau of Health programs, including the Office of Data, Research and Vital Statistics, the Children with Special Health Needs Program and Public Health Nursing to develop and implement this initiative. Together, these organizations have the skills to enhance the infrastructure of services for families affected by hearing impairment. Maine is well positioned to implement the Maine Newborn Hearing Program.

GRANT NARRATIVE

a. Project Description

Problem and Current Status

The goal of universal newborn hearing screening is that all newborns are screened prior to discharge from the hospital or by one month of age, receive appropriate follow-up and diagnostic evaluation by age 3 months and are receiving intervention and services by 6 months. Studies have shown early screening, diagnosis and intervention can significantly improve the outcome for infants with hearing impairment. Rapid development of technology has allowed screening methods to be used by non-audiologists in the nursery setting. Screening before hospital discharge using automated brainstem response (ABR) or otoacoustic emission (OAE) technology is cost effective and allows for early diagnosis and intervention. Existing newborn hearing programs have found tracking and follow-up to be the most challenging part of the program.

Based on national statistics, significant hearing loss is present in 3 of every 1,000 live births. Experience from other state's programs estimate that with new technology 1-3% of infants will need a referral for diagnostic evaluation. Given Maine's birth rate is approximately 13,500 per year, 135 to 405 infants would require tracking and we might expect to confirm significant hearing loss in up to 54 infants per year requiring intervention. Without universal newborn hearing screening, affected children may not be identified with hearing loss before the age of two. Recently, in Maine we have had several children with hearing impairment not diagnosed until school age. Regardless of the degree of hearing loss, the consequences of late identification can have irreversible negative effects on a child's academic, social and vocational development. As with many other disabilities, there are benefits to early identification and early intervention.

State mandatory screening programs for other conditions have been in place for more than thirty years. However, screening for hearing loss is not mandated in all states even though it is more common than any of the conditions included in newborn screening programs for metabolic and endocrine disorders. (Congenital hypothyroidism is the most common at 1:4000 births.) Maine has recently passed legislation addressing this issue. While it does not mandate screening, it does require reporting and tracking.

Many professional organizations, including the American Academy of Pediatrics, the National Institute of Health and the American Academy of Audiology, support universal hearing screening as a standard of care for newborns. It was included- in the Healthy People 2000 objectives and in the Healthy People 2010 objectives and has received national attention as a public health issue. Despite this support and attention, many children continue to go undiagnosed.

Early Hearing Detection and Intervention (EDHI) in Maine.

Maine had 13,390 births in 1999 and it is estimated that only 39% of those infants had access to hearing screening prior to discharge. Multiple factors, unique to a rural state like Maine, contribute to problems with implementing universal hearing screening including geography, hospital size, staffing, specialist shortages and changing service delivery. Currently Maine has thirty-two birth hospitals and fifteen, or 46 % of those hospitals, delivered less then 200 babies for 1999. Several community hospitals no longer provide obstetrical services and families travel greater distances to receive medical care and services.

In 1999, the Genetics Program surveyed all thirty-two birth-hospitals regarding current newborn hearing screening practices and future plans for implementation. A recent update to that survey had a response rate of 84% (27 hospitals). The survey revealed that only 31% of birth hospitals (10) currently screen all of their newborns prior to discharge with 6% of hospitals (2), referring newborns to other agencies for hearing screening. There is one other hospital screening only at risk newborns in the neonatal intensive care unit (NICU). Based on this survey, it is estimated that only 39% of Maine infants had access to hospital-based newborn hearing screening in 1999.

The survey indicated that although some hospitals schedule follow-up appointments for their newborns that fail screening in the nursery, hospitals are not consistent in the follow-up and referral of those needing further evaluation once newborns leave the hospital. There is no central tracking of newborn hearing screening activities or results therefore it is impossible to evaluate the effectiveness of current screening activities.

Several other Maine hospitals are in the early stages of implementing newborn hearing screening programs. Since almost half of Maine birth hospitals have less then 200 deliveries per year, the cost of implementing a newborn hearing screening program is a major factor. All hospitals surveyed expressed budgetary constraints as the main reason for not implementing a newborn hearing screening program and that they would need to seek outside funds to assist in the purchase of equipment.

In 1999, 59% (19) of birth hospitals in Maine had no plans to implement a newborn hearing screening program. In 2000, two of those hospitals are now in the process of purchasing hearing screening equipment and expect to implement a hearing screening program by year end. Also five hospitals (15%) expect to add hearing screening equipment to their capital equipment budget for the next fiscal year. The remaining hospitals (12) have no plans to implement newborn hearing screening in the near future.

A public health newborn screening program consists of several components. Screening is only the beginning. Comprehensive evaluation, diagnosis and intervention are also essential for a successful program. Centralized tracking is needed to assure children receive intervention and services that are appropriate to the needs of the child and the family. Data tracking and surveillance can also provide program evaluation and outcome evaluation. Integration with other public health programs and other related databases can strengthen the efforts of early hearing, detection and intervention programs.

During the 119th Legislative session, legislation was passed formally establishing the Maine Newborn Hearing Program, Public Law 647, 22 MRSA c.1686. While not comprehensive, the statute does require birth hospitals to inform new parents of the importance of hearing screening and ,intervention. If the hospital does not provide screening, they must make a referral for the parents to a provider who does. Hospitals and others performing screening will be required to report the results of screening to the Maine Newborn Hearing Program (MNHP). However, hearing screening is not mandated and families may decline testing. The MNHP will provide technical assistance and will be responsible for tracking to assure hearing impaired infants receive appropriate intervention. The legislation also authorizes the creation of two new positions to perform the functions of the MNHP. See Appendix A for a copy of Public Law 647, 22 MRSA c.1686.

In an effort to promote newborn hearing screening, the Division of Community & Family Health (DCFH) sponsored a one-day workshop. It was held in April 2000 in three locations in Maine; Portland, Bangor and Presque Isle to make the workshop more available to individuals in all areas of the state. The purpose of the workshop was to provide a forum to discuss newborn hearing screening and share information from hospitals that have successful programs. One hundred twenty two people attended, including nurses from birth hospitals, community health nursing agencies & public health nurses, audiologists and early intervention staff. Dr. Karl White from the National Center for Hearing Assessment and Monitoring in Utah facilitated the workshop. Two concerns were identified: the cost of equipment and the lack of infrastructure to provide comprehensive audiologist evaluation and intervention in some areas of the state. Participants shared strategies for acquiring equipment and networking with audiologists in their communities. Representatives from DCFH have met with audiologists, deaf advocates and the University of Maine (UMO) to discuss these issues and explore possible strategies to address concerns. As a result of this workshop, many hospitals that were not screening are now working with administrators, physicians, audiologists and community groups to develop plans to implement screening.

Diagnostic services

Diagnostic audiologic services are provided in a variety of settings in Maine. Those settings include hospitals, physician offices (Ear, Nose and Throat specialists), and other agencies. There are fifty-two audiologists licensed in the state of Maine. Although distribution follows the population fairly consistently, there are areas that are clearly under-served. Currently, there are only two audiologists to serve northern Maine and only two in eastern Maine. Families receiving services in this part of the state must travel, on average, two hours each way to access these services. The Maine Academy of Audiology (MAA) surveyed all audiologists with 42% return (22). Of those responding, fifteen were currently using ABR technology and fifteen were using OAE technology. The survey did not inquire about experience working with specific populations so it is not known how many are experienced in evaluating infants and how many will need training to develop this capacity.

Early Intervention survey

In May 2000, in order to better understand current early intervention services within the State of Maine, a needs assessment survey was sent to twenty four sites that provide these services including Child Development Services, Developmental Evaluation Clinics and Governor Baxter School for the Deaf Early Intervention Outreach. The overall response rate was 50% with responses from approximately 40% of child development service sites and developmental evaluation clinics and 100% response from Baxter School for the Deaf Outreach Program. One of the survey responses did not identify the agency.

The survey indicated that early intervention services are provided for infants who are deaf or hard of hearing from birth to 36 months at 83% of the facilities (10). Baxter School for the Deaf is the only agency providing services statewide. Early intervention providers indicated that deaf and hard of hearing children between birth and 36 months of age are enrolled in their early intervention program. Only 11 % of children enrolled (6 of 54) were less then six months of age. There was no information available on the number of children initially enrolled prior to six months of age.

Although most early intervention programs are community based, families still may need to travel ninety miles each way in the northern part of the state to receive services and families in southern Maine may travel up to sixty miles each way to receive services. In order to meet the needs of families, some intervention sites travel to the child's home, day care or school and are most often provided at least weekly. In addition to discussing audiology reports, audiologist and early intervention programs also discuss choice of communication/language method, hearing aid/cochlear implant fittings and settings, assistive listening devices and referrals for additional rehabilitation services for the children enrolled in their early intervention programs.

Sites shared that there are poor linkages between the medical community, service providers and intervention services thus creating challenges in access to services and support for Maine's deaf and hard of hearing children and their families. Those responding mentioned universal hearing screening programs in all hospitals as a need, as well as more programming for families regarding other communication choices, American Sign Language is the primary method offered.

Newborn Screening Program

The Genetics Program administers the Maine Newborn Screening Program. Maine currently screens all infants for eight disorders (PKU, Hypothyroidism, Galactosemia, Homocystinucia, Maple Syrup Urine Disease, Congenital Adrenal Hyperplasia, Biotinidase Deficiency and MCAD) and offers screening for hemoglobinopathies upon request. The Newborn Screening Program works closely with a designated contact person at each birth hospital along with the perinatal nurse manager to assure all newborns are screened for these conditions. Regular contact with the hospitals and with pediatric providers has allowed Maine to maintain a high screening rate (99-99.8%) for this program with 100% of affected infants in treatment within three days of diagnosis. Newborn screening records are matched with birth certificates. When there is no screening record for a live born infant, follow-up begins immediately to locate the infant and obtain a screening specimen. Infants who have not been screened generally are those who die early in the neonatal period and those with documented parental religious objection. The program staff contacts the physician of record for all infants with unsatisfactory specimens and those, with screening results that are outside of the reference range to request a repeat specimen. These cases are tracked until all results are within normal limits ruling out a disorder or until a disorder is confirmed and the child is in treatment. Public health nurses (PHN) and community health nurses (CHN) assist in follow-up of children who need repeat screening tests and also provide information on appropriate referrals and services available. Children who are confirmed to have one of the disorders, are referred to the Children with Special Health Needs Program (CSHN), within DCFH, for follow-up and care coordination.

The coordination of metabolic screening and hearing screening programs share some similarities. The similarities include that both are population-based programs including all newborns, coordination is required with birth hospitals and primary care providers and both data sets can be linked with birth certificates to determine screening rates and provide follow-up if necessary. Both programs identify infants in need of further evaluation and possible intervention to prevent problems and assure those services are available. The differences include that hearing screening occurs in each birth hospital (32) rather than one laboratory and involves a referral system that is more diverse with tracking and follow-up that is more complex and time intensive.

Maine Birth Defects Program

The Genetics Program is developing a surveillance system to collect data on the occurrence of birth defects and analyze the data for program planning, prevention and improving access to services essential to improve the life of affected children. Currently there is no statewide surveillance system for birth defects. Birth Hospitals will be responsible to report the occurrence of specific birth defects in an infant or fetus. The Birth Defects Program will link these reports with other data, including vital records and clinic data. Referrals for services will be available to families through public health nurses or CSHN. As this program continues to evolve, the data will be available to link with MNHP data:

Children at Risk Database, University of Maine

The University of Maine, Department of Communication Sciences and Disorders at the Orono campus is implementing the Children at Risk Database (CARD) Project. UMO, through this project, will work closely with the Bureau of Health, Genetics Program and the Newborn Hearing Program to set up the database and tracking system for this initiative. The system is being designed, to provide linkages with other programs and databases relating to children at risk for a variety of problems, including developmental delays and health problems.

The citizens of Maine would benefit from the support of the Centers for Disease Control and Prevention (CDC) to establish an Early Hearing Detection and Intervention Program. Surveillance of early hearing detection, tracking, research and integration of data with other newborn screening programs will help identify those infants and families needing services and provide program and outcome evaluation. The existing relationships between the Genetics Program, Maine's birth hospitals and pediatric provider community, PHN, CHN and CSHN, along with the recent assessments and workshops conducted by the Genetics and Children with Special Health Needs Programs and support from deaf advocates and service providers position Maine to be successful to implement an Early Hearing, Detection and Intervention Program.

b. Goals and Objectives

The overall goal of this initiative is to assure all Maine infants, children and their families have access to early hearing detection and intervention services. Surveillance of these activities will provide data for evaluation of the Maine Newborn Hearing Program (MNHP), and for research related to hearing detection in newborns. Although the long-term goal of this EHDI program is to assure appropriate screening, diagnostic and intervention services, in order to achieve this, it is necessary to first institute practices that will result in an organized comprehensive system. Therefore, we have developed both immediate and long-term goals. Activities and reporting are planned accordingly.

The following describes the principal objectives of the first year of the proposed initiative. The approach to each of these objectives will follow in Section c.

Objective 1: By August 31, 2001, to develop and implement a surveillance and tracking system will be in place and integrated with other MCH data systems.

Strategy: collaborate with UMO in development of Children At Risk Database for use with newborn hearing screening surveillance and tracking, integrated with other MCH data systems such as birth certificates, newborn screening and birth defects surveillance.

Objective. 2: By August 31, 2001, to develop and institute a screening reporting system for hospitals and audiologists to assure accurate data collection and tracking of infants screened for hearing impairment.

Strategy 1: develop reporting methods for screening and follow-up.

Strategy 2: provide technical assistance and grant support to hospitals and audiologists for development and improvement of hospital based hearing screening programs.

Objective 3: By August 31, 2001, to increase access to pediatric audiologic diagnostic evaluation, intervention and services.

Strategy 1: identify availability and distribution of audiologists experienced in evaluating infants and young children.

Strategy 2: work with Maine Academy of Audiology to expand pediatric audiology expertise throughout the state.

Strategy 3: improve connections with service providers.

The following objectives will be addressed in the subsequent years of the proposed initiative.

Objective 4: to increase by 10% annually the number of newborns screened prior to discharge or by 30 days of age.

Objective 5: to increase by 10% annually the number of infants receiving audiologic diagnostic evaluation by three months of age.

Objective 6: to increase the number of infants receiving appropriate intervention and services by six months of age.

c. Description of Program and Methodology

The first year of this project will focus on developing the surveillance and tracking system, and integrating with other MCH data systems. Other activities will be directed at establishing reporting methods to collect more accurate information relating to EHDI and building the infrastructure to support universal newborn hearing screening and intervention in Maine.

The Newborn Screening Program will be used as a model for tracking. Specific strategies are described as they relate to each objective.

Newborns will be screened prior to discharge from the hospital. Until all hospitals are doing universal screening, the MNHP will also monitor those infants referred for initial hearing screening done after discharge. The specific method of reporting will be determined in consultation with hospitals and audiologists. Data to be collected will be determined in consultation with CDC and the University of Maine, Department of Communication Sciences and Disorders. Birth hospitals will report regularly on all infants born, if each infant was screened or parents declined screening, the results of screening, the plan for follow-up for those needing further evaluation and where the child was referred for diagnostic evaluation.

Audiologists will perform diagnostic audiologic evaluation by age 3 months with intervention by 6 months of age. Each audiologist will report on all infants referred, who received evaluation, results of that evaluation, family choice of intervention and confirmation that chosen. intervention was received.

Newborn hearing information and reports from hospitals and audiologists, will be linked monthly with electronic birth certificates and newborn screening (metabolic) data. Birth defects . program data will be used when it is available.

As is done for other conditions, the Newborn Hearing Program will make a referral to CSHN for all infants at the time of diagnosis. A case manager from CSHN will contact the family, refer the child to PHN, determine medical/financial eligibility for CSHN program, provide payment for services for those infants who are eligible and care coordination for all children referred into the program, assisting families with accessing resources and support services.

As mentioned previously, The University of Maine (UMO), Department of Communication Sciences and Disorders at the Orono campus is implementing the Children at Risk Database (CARD) Project. UMO, through this project will provide the platform for the database surveillance and tracking system for this initiative. The system is being designed to provide linkages with other programs and databases relating to children at risk for a variety of short and long-term outcomes, including developmental delays and health problems.

Objective 1: By August 31, 2001, a surveillance and tracking system will be in place and integrated with other MCH data systems.

Strategy: to collaborate with UMO in development of CARD for use with newborn hearing screening surveillance and tracking, integrated with other MCH data systems such as birth certificates, newborn screening and birth defects surveillance.

The MNHP will consult with CDC on data to be collected to assure consistency across cooperative states. We will collaborate with UMO in the development and management of the Children at Risk Database Project (CARD) to include Newborn Hearing Program surveillance and tracking and establish linkages with electronic birth certificates and the Maine Newborn Screening r Program (metabolic). Linkages will also be developed with Maine Birth Defects Program as this surveillance program continues to evolve.

Procedures will expand on the tracking system in place for the Newborn Screening Program. Tracking will occur to monitor screening practices and assure all infants have access to hearing screening and those that are screened, receive audiologic diagnostic evaluation and intervention as appropriate. Institutional Review Board approval through the Bureau of Health IRB will be pursued.

Objective 2: By August 31, 2001, to institute a screening reporting system for hospitals and audiologists will be developed and instituted to assure accurate data collection and tracking of infants screened for hearing impairment.

Strategy 1: develop reporting methods for screening and follow-up.

Strategy 2: provide technical assistance and grant support to hospitals for development and improvement of hospital based hearing screening programs.

The MNHP will consult with CDC on data to be collected and the development of an appropriate method for reporting results of newborn hearing screening and intervention i.e., content, frequency, format and reporting method. The MNHP will provide technical assistance to support. hospitals in the development and implementation of screening programs. The hospitals will identify a contact person who will be a liaison to the Newborn Hearing Program, reporting screening results and other information as outlined by MNHP. Support will also be in the form of grants for birth hospitals to defray the cost of purchasing appropriate equipment or for contracts with audiologists for consultation in developing screening programs. The Newborn Hearing Program Advisory Board as outlined in statute, will be convened, including representation from the MNHP. A contract for consultation with a qualified audiologist will be developed to review records of screening, identification and intervention related to hearing impairment in newborns and provide input to program guidelines.

Rules and regulations will be developed and promulgated to outline responsibilities, reporting requirements and program functioning.

Objective 3: By August 31, 2001, to increase access to pediatric audiologic diagnostic evaluation, intervention and services.

Strategy 1: identify availability and distribution of audiologists experienced in evaluating infants and young children.

Strategy 2: work with MAA to expand pediatric audiology expertise throughout the state.

Strategy 3: improve connections with service providers.

A survey will be sent to licensed audiologists to determine the level of experience and interest in evaluating newborns. This information Will help to identify under-served areas of Maine, to assess training needs and to develop or enhance the existing provider network. The program will participate with UMO to plan and present a seminar for audiologists on screening and diagnostic methods for infants and young children. Meetings will be held with qualified pediatric audiologists to promote mentoring relationships to support audiologists in increasing their skills in the screening and diagnosis of infants and young children and to facilitate recruitment of qualified audiologists to under-served areas of Maine.

The MNHP will collaborate with MAA, UMO and the Advisory Board and the Children with Special Health Needs to identify or develop guidelines for infant hearing screening, audiologic evaluation and intervention and to develop appropriate materials for families. These materials will include all available options for intervention and communication methods. All materials will be easy to read and culturally competent. We will partner with other state agencies and organizations to establish better referral networks, (i.e., Department of Education, Baxter School for the Deaf, Child Development Services/Part C and others). This group will research and/or develop, publish and distribute a resource directory of services available for infants, children and families, publish and distribute.

See Appendix B for timeline.

d. Evaluation Plan

An evaluation consultant will be identified through the existing relationship with the University of Maine, Muskie School of Public Service, Institute for Public Sector Innovation (IPSI) to assist in further development of the evaluation plan. An epidemiology consultant will be identified through an existing relationship with the University of Southern Maine (USM) to guide data analysis.

To provide consistency among Division programs and Genetics Program initiatives, the evaluation for this initiative will use the Logic Model approach to monitor progress and outcomes. Data from the surveillance and tracking system will be used to monitor

• screening rates, % of infants born at each birth hospital that have a hearing screen prior to discharge, % of infants screened by I month of age
• referral rates, % of those screened that resulted in a "refer" pattern,
• access to diagnostic audiologic evaluation, Of those with a refer pattern, how many received diagnostic audiologic evaluation (by 3 months), how many with unilateral, bilaterral, mild, mod, severe, profound hearing impairment
• access to intervention, Of those who were diagnosed to have hearing impairment, how many received- intervention and what kind of intervention was chosen by the family (by 6 months).
• "false positive" rates, Of those who were evaluated, how many were found to have a normal level of hearing,
• prevalence and trends of hearing impairment compared to expected rates,
• timeliness and completeness of reporting from hospitals and providers. Audiologists will report on hearing impairment identified in older infants and children. This report will be compared with newborn hearing screening records and evaluated as late or progressive hearing loss or possibly a missed case,
• obtain input and document concerns from families of infants regarding the early hearing detection and intervention process through surveys or focus groups. Consumer representatives participating in the Advisory Board will also provide input,
• success at meeting projected timeline I

e. Collaborative Efforts

As noted previously, this initiative benefits from existing collaborative relationships and partnerships among the Bureau of Health programs and .various other programs and agencies in Maine. Enacted legislation requires birth hospitals and providers of audiologic services to report results of testing to the program. The MNHP is responsible to assure families of affected children have access to services by establishing monitoring, tracking and follow-up activities.

Bureau of Health Programs

Children with Special Health Needs Program (CSHN)

The CSHN Program provides community based care coordination and acts as a third party payer for specialty diagnosis, treatment and planning services for income and medically eligible children in Maine. Covered conditions include, but are not limited to: cleft lip and palate, spina bifida, cystic fibrosis, cardiac conditions and metabolic problems. CSHN is in the process of strategic planning and revising rules and regulations to meet the needs of families, including children with hearing impairment. The Genetics Program works closely with CSHN to assure infants and children identified with genetic conditions receive specialty medical care and other services, specifically those identified through newborn screening. The CSHN Program will work with the Newborn Hearing Program to assure a comprehensive referral and service system for affected children and their families. Developmental Evaluation Clinics (DEC) are supported by CSHN and are available in five regional sites at community-based agencies. The clinic team is composed of health professionals with a special interest and expertise in the field of child development. Children with hearing impairment are often referred to a DEC to receive developmental evaluations.

Public Health Nurses (PHN)

Public Health Nurses are the key connection between the Bureau of Health programs, other state programs and the individuals and families that those programs serve. Contracts exist with community health nursing agencies to supplement PHN services. Nursing visits are available statewide, in every community and are a very critical link between the individual and the services that he or she needs. They assess individual and family needs and provide education, support and referrals. Currently, nurses visit families identified through the Newborn Screening Program and the CSHN program. With the initiation of the Maine Newborn Hearing Program, they will include all families identified by the registry for a possible home visit and follow up services.

Office of Data, Research and Vital Statistics

The Office of Data, Research and Vital Statistics is responsible for the collection and analysis of vital records, health status indicators, and health care resource data for the state of Maine. This office will provide birth certificate and infant death certificate data to the Maine Newborn Hearing Program. This vital records information will be linked to the Hearing Program data as it is with the Newborn Screening Program data to monitor screening patterns and identify infants who have not been screened.

Provider Services

Maine Academy of Audiology

Representatives from. the Maine Academy of Audiology will collaborate on identifying or developing appropriate information for families, identifying under-served areas of the state and developing plans to meet the needs of affected children in all areas of Maine. Audiologists in Maine will also report screening and assessment results to the MNHP on infants and young children. The r Academy will assist with planning for a seminar on diagnostic methods and explore development of mentoring opportunities to increase the capacity of current audiologists to work with infants and young children.

Other Organizations .

University of Maine, Department of Communication Sciences and Disorders

UMO is implementing the Children at Risk Database (CARD) Project. The University, through this project will work closely with the Bureau of Health, Genetics Program and the Newborn Hearing Program to set up the database and tracking system for this initiative. The system is being designed to provide linkages with other programs and databases relating to children at risk for a variety of problems, including developmental delays and health problems.

Department of Education, Baxter School for the Deaf, Early Childhood and Family Services (ECFS)

ECFS will advise the MNHP regarding services available for families. ECFS provides consultative services, at no cost, to Maine families with children, birth to five, who are deaf or hard of hearing. Services include family support, continuum of communication choices, hearing aids and auditory trainers, cochlear implants, evaluation and support in areas of early childhood development, social and emotional development, language development, deaf culture, educational options and strategies for school success, family networking and assistance with identifying community and funding resources. Staff at the three regional ECFS sites will work with the Newborn Hearing Program to assure families have access to support and other services.

Advisory Board

The legislation that formally establishes the Maine Newborn Hearing Program describes an Advisory Board that will provide oversight and advise the Program. The Board will also recommend procedures for hearing screening, evaluation; treatment and intervention services. The Board will consist of at least fifteen members which include the following: an audiologist, a physician, a speech-language pathologist, a nurse, a certified teacher of the deaf and a person who provides early intervention services through the Governor Baxter School for the Deaf. There are will also be representatives from the deaf community: a person who is culturally deaf, a person who is hard of hearing or deaf, a parent of a child who is culturally deaf, a parent of a child who is hard of hearing or deaf and a parent of a hearing child. There will be other members with an interest in newborn hearing screening: a representative of hospitals, a representative of health insurance carriers, a representative of Child Development Services System established in Title 20-A, section 7724 and a representative of the Department of Human Services.

f. Staffing and Management System

The overall direction for the Newborn Hearing Program will be provided by Ellie Mulcahy, RNC, Director of the Genetics Program. Christina Armstrong, Newborn Screening Program Coordinator, will provide consultation for the planning and implementation of the Newborn Hearing Program. Elaine Gagnon, CSHN Health Planner, has conducted two needs assessments related to newborn hearing screening and early intervention services in Maine. Ms Gagnon will provide follow-up and care coordination for infants identified with hearing impairment once the program is in place. Both Ms Armstrong and Ms Gagnon will serve as liaisons with birth hospitals and service providers and assist with planning and implementation until new staff are hired and assume these responsibilities. Fredericka Wolman, MD, MPH is the Maternal & Child Health Medical Director for DCFH. Dr. Wolman will serve as the medical consultant for this initiative.

Two new positions, authorized in the enabling statute, will be created to carry out the functions of this initiative. A comprehensive health planner will coordinate the Newborn Hearing Program. The coordinator will be a registered nurse who has professional experience caring for newborns and infants and will be knowledgeable regarding newborn screening practices and resources and services within the state. This individual will participate in the Newborn Hearing Program development, implementation and evaluation and consult with hospitals, physicians, audiologists and others to provide technical assistance on program issues and procedures. The coordinator will also be responsible to identify and plan educational and outreach projects.

A clerk typist will be hired to provide secretarial support to the program. This person will complete data entry for newborn screening tracking and follow-up, will monitor reporting and prepare reminders of required follow-up and other correspondence. This person will also maintain statistical information for reports and provide other general secretarial support for the MNHP. Resumes of existing personnel and job descriptions for new positions are including in Appendix C.

The Division of Community & Family Health has an existing relationship with the University of Southern Maine (USM) for epidemiology consultation. This relationship will also support this initiative regarding data analysis and program evaluation. An epidemiology consultant will be identified through an existing relationship with USM to guide data analysis. A contract will be developed with an audiologist to consult with the program to review records of screening, identification and intervention related to hearing impairment in newborns.

The University of Maine in Orono (UMO), Department of Communication Sciences and Disorders is developing a Children at Risk Database (CARD) Project, as a rural health and education initiative. The long-term goal of this project is tracking and support for improved services to children at risk in Maine. UMO will identify a liaison between the CARD Project and the Newborn Hearing Program. UMO will develop and implement the surveillance and tracking system, provide the server and software to be used by the central program and reporters, perform database management responsibilities, assure confidentiality of all data within the database. UMO has also committed to presenting a seminar for audiologists on diagnostic methods.

g. .Organizational Structure and Facilities

The Division of Community.& Family Health, Bureau of Health, Maine Department of Human Services is the applicant agency for this initiative. The Bureau is the official state health agency for Maine and its director is the State Health Officer. Maine's public health system is unlike that of many other states. With no county health departments and only three municipalities with local health departments, most public health functions are concentrated at the state level. In order to accomplish its mission throughout the state, the Bureau of Health, in addition to the Public Health Nursing staff, contracts with private/non-profit health organizations and community agencies to provide public health services at the local level.

The programs of the Bureau are carried out by the following divisions and offices, the Division of Community and Family Health; the Division of Health Engineering; the Division of Disease Control; the Health and Environmental Testing Laboratory and the Office of Health Data and Program Management. Several programs within the Division of Community and Family Health will be integrally involved with the development and implementation of the Newborn Hearing Program. In particular, the Genetics Program, the Children with Special Health Needs Program (CSHN) and Public Health Nursing will provide services and supports that form an infrastructure for comprehensive public health detection, tracking, referral and services. Please see Appendix D for organizational charts for the Bureau of Health and the Division of Community and Family Health.

The Newborn Hearing Program will be administered by the Genetics Program, within the Division of Community and Family Health. The Genetics Program leas established by the Maine Legislature and has statutory authority (Title 22, s. 1533) to administer statewide voluntary genetics services, including testing, counseling. and education to parents and prospective parents who are at increased risk for genetic conditions. It administers grants to two genetic service agencies in Maine which provide risk assessment, laboratory and clinical diagnosis, counseling, case management and referral, and education of providers, consumers and the general public. The Genetics Program also coordinates the screening, tracking, referral and follow-up of all newborn infants for conditions (such as PKU) which, if untreated, can cause mental retardation, other health problems or death. Additionally, the Genetics Program provides technical assistance to the thirty-two birth hospitals in Maine regarding newborn screening and conducts genetics education and training for health professionals. The Maine Birth Defects Program is also within the Genetics Program. This statewide surveillance program is still in the planning stages and as it continues to evolve, linkages to this data will be arranged.

The Genetics Program has an exceptional collaborative relationship with all birth hospitals, pediatric care providers, Public Health Nursing and the CSHN Program in the state. The program director consulted with legislators, the Maine Academy of Audiology, the University of Maine Department of Communication Sciences and Disorders, Department of Education and advocates for the deaf as they prepared legislation to establish the Maine Newborn Hearing Program. The lack of a traditional public health system in Maine, as noted above, has often been identified as an obstacle to achieving effective public health interventions. However, it has forced the State, health care professionals and local communities to work together to provide services to Maine's citizens. See Appendix B for organizational charts.

An Advisory Board, composed of representatives from the medical, educational, community, public, private and consumer sectors, will be convened to provide input and guidance to the Bureau of Health in the development and implementation of this EHDI initiative.

h. Human Subjects Review

The Bureau of Health Institutional Review Board will be consulted regarding an appropriate review of the activities of the Newborn Hearing Program.

References

1 . AAP, Task Force statement, PEDIATRICS Vol. 103, No. 2 February 1999; 527-529.

2. Finitzo, T, Albright, K, and O'Neal, J., The Newborn with Hearing Loss: Detection in the Nursery. PEDIATRICS, Vol. 102, No. 6 December 1998; 1452-1459. .

3. Garganta, C, Seashore, M, Universal Screening for Congenital Hearing Loss, Pediatric Annals, Vol. 29, No. 5, May 2000; 302-308.

4. Van Naarden, K, Decoufle, P and Caldwell, K, Prevalence and Characteristics of Children with Serious Hearing Impairment in Metropolitan Atlanta, 1991-1993, PEDIATRICS Vol. 103, No. 3, March 1999; 570-575.

5. Vohr, BR, Carty LM, Moore PE, Letourneau K, The Rhode Island Hearing Assessment Program: experience with statewide hearing screening (1993-1996). J Pediatrics 1998; 133; 353-357.

6. White, KR. Realities, myths and challenges of newborn hearing screening in the United States. Am J Audiology, 1996, 6; 95-99.