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

MAINE

MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT

Universal Newborn Hearing Screening and Intervention CFDA #93.251
Project Abstract: Maine Newborn Hearing Program
Project Title: Maine Newborn Hearing Program
Project Number: CFDA #93.251
Project Director: Ellie Mulcahy, RNC Phone: (207) 287-4623
Organization Name: Bureau of Health, Maine Department of Human Services
Address: 11 State House Station, Augusta, Maine 04333
Contact Person: Ellie Mulcahy, RNC Phone: (207) 287-4623
Fax: (207) 287-5355 Email: eleanor.a.mulcahy@state.me.us
Project Period: 4 years
From: 9/1/01-8/31/05

1. Organizational Setting

The Maine Newborn Hearing Program (MNHP) is an initiative of the Genetics Program, within the Division of Family Health (DFH), Bureau of Health, Maine Department of Human Services. Ellie Mulcahy is the director of the Genetics Program and will serve as project director. The Genetics Program is responsible for administering the Maine Newborn Hearing Program, the Maine Newborn Screening Program and the Maine Birth Defects Program and works closely with the Children with Special Health Needs Program and Public Health Nursing.

2. Purpose

The purpose of this project is to further develop and implement the Maine Newborn Hearing Program. As Maine hospitals move toward implementing UNHS, MNHP will coordinate and integrate a system of screening, medical home and audiology coordination, professional and family education, referrals and follow-up. The anticipated benefit will be to assure achievement of screening and intervention goals. The over-arching 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 comprehensive diagnostic evaluation by age 3 months and are receiving intervention and services by 6 months, including links with a medical home, Part C Early Intervention Services and ongoing support for the family. Through the activities described within this proposal, the program will continue to assess, develop and evaluate the infrastructure and services necessary to assure that infants have access to screening, evaluation, intervention and services within the recommended time frame.

3. Challenges

A comprehensive system of screening, evaluation, intervention and linkage to the medical home and services is essential to assure affected infants have an optimal outcome. Maine does not have a mandate for hearing screening of newborns and currently 47% of infants have access to screening. Without UNHS, affected children may not be identified with hearing loss before the age of two and without tracking, those identified may not receive early intervention and services. Many factors contribute to problems with implementing UNHS. Some include awareness, funding, hospital size and staffing shortages, specialist shortages, geographic distance and changing service delivery. As more Maine hospitals screen, it will be increasingly important to plan activities that will result in an organized and comprehensive system.

4. Goals and Objectives

The overall goal of this initiative is to further develop and implement a UNHS program and to assure that all Maine infants, children and their families have access to early hearing screening, evaluation and intervention services. The program goals are as follows:

Goal 1: By August 31, 2002, to develop and implement a statewide universal newborn hearing screening program,

Objective 1: Facilitate the establishment of an Advisory Board and participate as program staff. Objective 2: Collaborate with CSHN Program, Maine Academy of Audiology and other consultants to establish screening protocols, guidelines for evaluation, intervention and services. Objective 3: Provide technical assistance and grant support to hospitals and audiologists for development and/or improvement of hospital based hearing screening programs.

Objective 4: Promulgate rules outlining roles and responsibilities of hospitals, providers and the Program, including consent procedures, communicating results and referrals for services.

Objective 5: Collaborate with UMO in the development of Children At Risk Database Project for use with the MNHP for surveillance and tracking, integrated with other MCH data systems such as birth certificates, newborn bloodspot screening and birth defects surveillance.

Goal 2: By August 31, 2003, increase access to audiologic diagnostic evaluation services for infants.

Objective 1: Identify availability and distribution of audiologists experienced in evaluating infants and young children.

Objective 2: work with the University of Maine, Maine Academy of Audiology and National Center for Hearing assessment and Management to expand audiology expertise working with infants through out the state.

Goal 3: By August 31, 2002, increase access to early intervention services including parent to parent support.

Objective 1: Promote linkages and referral networks with existing agencies and resources

Objective 2: Develop and distribute resource guide for families of hearing impaired children. Goal 4: By August 31, 2002, All infants identified through the MNHP will have an identified medical home.

Objective 1: Promote medical home concept to all infants identified through the MNHP.

Objective 2: Increase awareness and knowledge of primary care providers regarding hearing screening, diagnosis, intervention and services.

Goal 5: By August 31, 2002 increase annually the number of infants who are screened and who received appropriate diagnostic and intervention services in a timely way.

Objective 1: Establish accurate baseline data for screening diagnostic and intervention services.

Objective 2: Increase by 10% annually, up to 95%, the number of newborns screened prior to discharge or by 30 days of age

Objective 3: All screening hospitals will have a refer rate of less than 4% within six months of beginning a screening program.

Objective 4: Increase by 10% annually, up to at least 80%, the number of infants receiving audiologic diagnostic evaluation by three months of age.

Objective 5: Increase by 10°/a annually, up to at least 80%, the number of infants receiving appropriate intervention and services by six months of age.

5. Methodology

The Maine Newborn (bloodspot) Screening Program will serve as a model for screening, reporting, tracking, evaluation and intervention and will participate in ongoing review of the project activities throughout its duration. The first year of this project will focus on developing and implementing the statewide UNHS program. Establishing the Advisory Board will be instrumental in providing input and feedback regarding developing screening protocols and guidelines for evaluation, intervention and service delivery. Technical assistance and grant support will be provided to birth hospitals to support implementation or improvement of universal newborn hearing screening. Some activities will be to formalize roles and standardize reporting methods to collect more accurate information relating to hearing screening and evaluation. A surveillance and tracking system with integration of other MCH data systems will be developed with the University of Maine. Surveillance and tracking is being funded through a Rural Health Initiative Project and Centers for Disease Control cooperative agreement. , All activities will be accomplished through collaboration with hospitals, medical home, the University of Maine, Bureau of Health programs, public health nursing, early intervention programs including Part C: Child Development Services, Governor Baxter School for the Deaf: Child and Family Services; the Advisory Board and other agencies and advocates to assure the Newborn Hearing Program is a comprehensive system.

6. Evaluation

Evaluation is recognized to be an ongoing and comprehensive process with revisions to plans and activities at all points in the system to improve outcomes. Reports will be provided to hospitals and other screeners and reporters on performance and findings on a regular basis. Data from the MNHP will be used to monitor and evaluate screening rates, referral rates, access to diagnostic audiologic evaluation, access to intervention, false positive rates, false negative rates, prevalence and trends, timeliness and completeness of reporting, success at meeting projected timeline. An evaluation consultant will assist in further development of the evaluation plan. An epidemiology will guide data analysis.

7. Text of Annotation

The purpose of this project is to develop and implement a comprehensive universal newborn hearing screening program. The program will develop a system to assure all Maine infants, children and their families have access to early hearing screening, evaluation and intervention services, including links to a medical home, CSHN Program, Part C Early Intervention Services: CDS and ongoing family-to-family support. Through the activities described within this proposal, the program will continue to assess and develop the infrastructure necessary to assure infants have access to screening, evaluation and intervention within the recommended time frame. Integration with other public health programs and other related databases will strengthen the efforts of this universal newborn hearing screening program.

8. Key Words:

universal, newborn, hearing, screening, intervention, development, implementation.

PROGRAM NARRATIVE

The Purpose of the Project

This grant application seeks support for further development and implementation of the Maine Newborn Hearing Program (MNHP) within the Genetics Program, Bureau of Health (BOH). As Maine hospitals move toward implementing universal newborn hearing screening (UNHS), the goal of this Program is to coordinate and integrate a system of surveillance and tracking and increase access through provider coordination, professional and family education, referral, follow-up, intervention and services. 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 comprehensive diagnostic evaluation by age 3 months and are receiving intervention and services by 6 months, including links with a medical home and Part C: Early Intervention Services and also with ongoing parent to parent support for the family. Studies have shown early screening, diagnosis and intervention can significantly improve the outcome for infants with hearing impairment. 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 is included in the objectives for Healthy People 2010 objectives and the Title V Maternal and Child Health Block Grant. In recent years, universal newborn hearing screening has received much attention as a national public health issue. Despite this support and attention, many children continue to go undiagnosed. Through the activities described within this proposal, the MNHP will continue to assess and develop the infrastructure necessary to assure infants have access to screening, evaluation, intervention and services within the recommended time frame.

Based on national statistics, significant hearing loss is present in 3 of every 1,000 live births. Maine does not have a mandate for hearing screening of newborns and does not currently have a mechanism for reporting results of the screening performed or for tracking abnormal results. Experience from other states programs estimate that with new technology 1-3% of infants will need a referral for diagnostic evaluation. Given Maine's birth rate of approximately 13,500 per year, 135 to 405 infants would require tracking with an expectation that up to 54 infants per year would be confirmed to have significant hearing loss requiring intervention. Without universal newborn hearing screening, affected children may not be identified with hearing loss before the age of two. Regardless of the degree of hearing loss, the consequences of late identification are serious and 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. The BOH is currently planning, developing and preparing to implement the system for screening, tracking and follow-up.

Using the Maine Newborn (bloodspot) Screening Program as a model, the Newborn Hearing Program will monitor screening activities and performance at birth hospitals. By working with a variety of agencies, hospitals, providers and individuals, the Program will increase access to screening services, identify a medical home and establish a follow-up and referral system for all infants who do not pass their initial hearing screen. Reports of hearing screening results will be matched with other databases, such as electronic birth certificates and newborn bloodspot screening records. When there is no hearing f screening record for a live born infant, follow-up will begin by locating the infant and the medical home to assure each infant has access to hearing screening and if needed, evaluation, intervention and services. Recognizing parental choice, it is anticipated that by the end of the four year grant, all infants born in Maine will have access to screening by hospital discharge or by one month of age and that at least 80% of those infants in need of comprehensive evaluation and intervention will receive those by the recommended six months of age.

A public health newborn screening program consists of several components. Screening is only the beginning. Without a linkage to the medical home, screening will be ineffective. Comprehensive evaluation, diagnosis, intervention and other services are also essential for a successful program. Currently no reporting or tracking system is in place in Maine. Centralized tracking is needed to assure children receive intervention and services that are appropriate to the needs of the child and the family in a timely fashion. Centralized 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 hearing screening, detection and intervention programs. This grant will support activities to further develop and implement a comprehensive universal hearing screening and intervention program in Maine.

Organizational Experience and Capacity

The Division of 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 also the State Health Officer. The Division of Family Health is the agency that administers the Title V Maternal and Child Health Block Grant and will provide guidance and support to this new program. Valerie Ricker MSN, NP is the director of the Division of Family Health. In addition to her public health education, she brings her experience as a nurse practitioner certified in both pediatrics and women's health. Fredericka Wolman, MD, MPH is the medical director for maternal & child health programs. In addition to her pediatric and public health education, she brings her experience as a researcher and reviewer of hearing screening grants at the national level. Dr. Wolman will provide medical guidance and consultation for the Newborn Hearing Program. Ellie Mulcahy, RNC is the director of the Genetics Program and will serve as project director for this initiative. Ms Mulcahy has worked with this program for almost ten years and as the director of the Genetics Program, she is also responsible for the Newborn (bloodspot) Screening Program, the Birth Defects Program and manages several grants to genetics agencies for comprehensive genetic services to individuals and families in Maine. She is the project director for a cooperative agreement with Centers for Disease Control for the Birth Defects Program and also another agreement for Early Hearing Detection and Intervention surveillance and tracking. Toni Wall is the director of the Children with Special Health Needs Program (CSHN). The CSHN Program provides family centered, culturally competent services such as care coordination and payment for specialty medical care for children with special health care needs. Ms Wall has experience with planning, implementing and evaluating initiatives. CSHN has received a Maternal Child Health Improvement Project grant to support the "Maine Works for Youth Project". This initiative will build on the successes of the "Maine Adolescent Transition Partnership", another activity implemented and support by CSHN, to achieve the six core outcome indicators of Achieving and Measuring Success for Children with special Health Care Needs by 2010. Ms Wall will oversee the care coordination and services provided to families referred to CSHN from the MNHP.

One of Maine's the strengths has been collaboration within its departments and bureaus in sharing expertise and resources. One example of this is the ongoing collaboration of the Maine Genetics Program, Children with Special Health Needs Program, Public Health Nursing and the Office of Health Data and Program Management. These partnerships will be discussed further in the Collaboration and Coordination section. Several programs within the Division have had success in coordinating, planning, 'implementing and evaluating programs.

The responsibilities of the MNHP have been assigned to the Genetics Program within the Bureau of Health, Department of Human Services. The Genetics Program has a long history of screening experience. Maine has been screening newborns for causes of inborn errors of metabolism since 1965. The Genetics Program has had statutory authority since 1984 to administer statewide voluntary genetics services, including testing, counseling, and education to parents and prospective parents who are at increased risk for genetic conditions. The Genetics Program has the primary responsibility for screening newborns for metabolic and endocrine disorders. The Genetics Program has planned and implemented several statewide initiatives. These initiatives include educational programs for providers and the public, expanding the screening panel to include mandatory screening for nine disorders with an optional expanded panel. Systems have been established for follow-up and management of identified infants. Once an infant has been suspected to have a disorder, the program uses aggressive follow-up procedures. to monitor the child until a condition is ruled out or the child is receiving appropriate treatment before long-term damage can occur. The program works closely with the birth hospitals, the medical home, clinical specialists, families, Children with Special Health Needs Program (CSHN) and Public Health Nursing (PI-IN) to assure all affected infants receive prompt and appropriate treatment, follow-up and care coordination. Additionally, the Genetics Program provides technical assistance to the thirty-two birth hospitals and the medical homes in Maine regarding newborn screening. The Genetics Program also conducts annual genetics education and training programs for health care professionals. The staff, within the Genetics Program, has a combined 53 years experience in public health. Staffing has been stable, resulting in staff with a great depth of knowledge and expertise.

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 database system will be arranged. The data from this program will be used to plan program evaluation, service delivery and prevention activities.

Maine has the capacity and the authority to develop and implement a statewide newborn screening program. The Maine Legislature passed a bill in 2000, Public Law 647, 22 MRSA c. 1686, that formally , establishes the Maine Newborn Hearing Program. While not comprehensive, the law requires hospitals to inform new parents of the importance of hearing screening and intervention. Hospitals and others performing hearing screening will be required to inform parents about newborn hearing screening and to report the results to the Maine Newborn Hearing Program and it authorizes tracking and referrals to services. A booklet has been created to assist with new parent education related to universal newborn hearing screening. See Appendix A for a copy of Public Law 647. The Newborn Hearing Program will be modeled after the Genetics Program's successful Newborn Screening Program for inborn errors of metabolism. A nurse, Kim Church, has been hired to be the coordinator for the Newborn Hearing Program., Ms Church RN, BSN has 18 years experience as a professional nurse working with mothers, infants and children in both hospital and public health settings. She is knowledgeable about the hearing , screening process, medical care and service systems in Maine. See Appendix B for Ms Church's resume.

The coordination of bloodspot 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 the medical home and both data sets can be linked with birth certificates to determine screening rates and provide for follow-up if necessary. Both programs identify infants in need of further evaluation and possible interventions to prevent problems and assure those services are available.

The Genetics Program will provide referrals for services for all infants and children identified by its screening and surveillance programs through Public Health Nursing and Children with Special Health Needs Program as well as other agencies. These systems will be described in more detail in Collaboration and Coordination Section.

Administrative Structure

Several programs within the Division of 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 (PHN) will provide services and supports that form an important part of the infrastructure for comprehensive public health identification, tracking and referral for intervention and services. These three programs work together successfully on a number of initiatives. The following organizational chart highlights the relationship of the Maine Newborn Hearing Program within the Genetics Program and with other key Bureau of Health programs, consultants and outside agencies. A complete organizational chart is included in Appendix C. More information is included in the sections on Collaboration and Coordination and Available Resources.

A.) Children with Special Health Needs Program (CSHN) The CSHN Program provides family centered community based care coordination that is culturally competent and acts as a third party payer for specialty diagnosis, treatment and planning services for income and medically eligible children in Maine. CSHN is in the process of 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. CSHN will contact the family and assure that services are in place for the infant and family. Linking families with a medical home, public health nursing, Part C of IDEA and other resources and services is vital. CSHN prides itself in assisting families to access appropriate services. The program will also assist families by providing support to access insurance, either private or public, working through the maze of claims, denials and appeals. The CSHN Program has in collaboration with Family Voices developed a family-to-family support network. Although in its infancy, this network will link veteran families (those experienced in negotiating the health care system) with newly identified families. Support provided to families by families has proven to be a great asset to this State where services and resources are often hours away from the community in which the family lives. This family support will be offered to all families. The CSHN Program's long standing relationship with pediatric care providers; Bureau of Medical Services (Medicaid), Department of Mental Health, Mental Retardation and Substance Abuse Services (Children with Special Needs), Child Development Services (Part C and B of IDEA in the Department of Education), insurance companies and others will ensure that children identified with a hearing loss will be connected to resources and services. This family-to-family network will supplement other family support efforts, such as Early Child and Family Services through the Governor Baxter School for the Deaf. The MNHP will also contract with a parent consultant to assure parent support and input is present.

Developmental Evaluation Clinics (DEC) are supported by CSHN and are available in five regional sites at community-based agencies. The DEC clinic team is composed of health professionals with special interest and expertise in the field of child development. The DEC's are available to children with hearing impairment for further developmental evaluations.

B.)Public Health Nurses (PHN) Public Health Nurses are the key connection at the community level 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. For the purposes of this grant, references to PHN services also include those services provided by community health nursing agencies. PHN nursing visits are available without regard to income statewide, in every community and are a very critical link between the individual and the services that he or she needs. All birthing hospitals in Maine network and refer to PHN services and most hospitals offer PHN visits to every new mother. One of the important roles of the Public Health Nurse is to coordinate area resources to meet the individual and family's needs. Other services include direct nursing services and population based services. Areas of service include maternal and child health, infectious disease, refugee and migrant health. They assess individual and family needs and provide education, support and referrals for mothers and their children aged 0-5 yrs. Currently, nurses visit families identified through the Newborn (bloodspot) Screening Program and the CSHN Program and are actively involved in all CSHN clinical activities. Public Health Nursing has the organizational capacity and infrastructure necessary to track infants lost to follow-up. With the initiation of the Maine Newborn Hearing Program, they will include families identified and referred to them for a home visit and follow up services.

C.) The Office of Health Data and Program Management 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 MNHP data as is done with the Newborn Screening Program data to monitor screening patterns and identify infants who have not been screened.

D.) University of Maine, Orono (UMO), Department of Communication Sciences and Disorders is currently implementing the Children at Risk Database (CARD) Project that will provide the network structure for the surveillance and tracking components of the MNHP. This is 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 develop and implement the surveillance and tracking system, provide the server and software to be used by the MNHP and reporters, perform data base management responsibilities and assure confidentiality of all data within the database.

The program will continue to work with these groups, as well as with others, in further development and implementation of a comprehensive newborn hearing screening program. These collaborations are described in section: Collaboration and Coordination.

Available Resources

There are many resources available to the MNHP, both internal and external to the Bureau of Health. The internal resources include current DFH staff and existing relationships with key agencies for expertise in epidemiology and evaluation. The external resources include the Centers for Disease Control EHDI programs and cooperative agreement, the University of Maine, the Maine Academy of Audiology, National Center for Hearing Assessment & Management (NCHAM) and the Maine Department of Labor, Bureau of Rehabilitation Services, Division on Deafness.

A.) Internal Resources: The overall direction for the MNHP is being provided by the director of the Genetics Program, Ellie Mulcahy, RNC. Christina Armstrong, Newborn Screening Program Coordinator, provides 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. The CSHN health planner will provide follow-up and care coordination for infants identified with hearing impairment once the program is in place. Fredericka Wolman, MD, MPH is the Maternal & Child Health Medical Director for DFH. Dr. Wolman will serve as the medical consultant for this initiative. Toni Wall, director of CSHN, will consult with the Program on issues related to care coordination, family to family support and third party reimbursement.

Two new positions, authorized in the enabling statute and supported through the cooperative agreement with CDC, have been created and filled to carry out the functions of this initiative. Kim Church, RN, BSN, a comprehensive health planner will coordinate the MNHP. She will participate in the development, implementation and evaluation of the MNHP and will 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 such as development of resource guides, educational literature and provide technical assistance to hospitals.

Debra Thompson, a clerk typist has been hired to provide secretarial support to the program. Ms Thompson will coordinate data entry for newborn screening tracking and follow-up, cross match information with other databases, will monitor reporting and prepare reminders of required follow-up and other correspondence. She will also maintain statistical information for reports and provide other general secretarial support for the MNHP. Resumes and job descriptions for new positions are including in Appendix B.

Additional resources available to the Maine Newborn Hearing Program to support grant activities include technical supports such as computer staff and other basic office technology, office space, telephone and general supplies for the program. These are resources provided by Division staff with existing funds. The Division of Family Health has an existing relationship with the University of Southern Maine (USM) for epidemiology consultation. This relationship will also support this initiative. An epidemiologist has been identified with USM to guide data analysis and program evaluation. The program will also have access to an evaluation consultant through the Maine Center for Public Health. This consultant will assist the program in further developing a comprehensive evaluation plan based on the Logic Model.

B.) External Resources: Maine has received a cooperative agreement with the Centers for Disease Control for the surveillance and tracking component of the MNHP. This agreement supports funding for two positions and activities related to the surveillance and tracking components of the Program.

The Program will benefit from the work of the University of Maine at Orono, Communication Sciences and Disorders Department in development of the Children at Risk Database that will provide the network structure for the surveillance and tracking components of the MNHP. The University will develop and implement the surveillance and tracking systems and perform data base management responsibilities. The system has been drafted and a meeting will be scheduled with representatives from birth hospitals to provide input for final development. The next step is to arrange a trial of the database system and pilot reporting in selected hospitals. The University will identify a liason to work with the Newborn Hearing Program to. assure the needs of the Program will be met. UMO has also committed to planning a seminar for audiologists and others interested in hearing screening on diagnostic methods and other support for increasing skills of the audiology community and early intervention services.

The Maine Academy of Audiology, representing approximately 40 audiologists statewide, is committed to the success of the program and has offered its. expertise and support in planning and implementation. Of particular interest is the development of screening guidelines, qualifications of screeners and audiologists, and access to services and support for affected children and their families. Contracts will be developed with two or more qualified audiologists to consult with hospitals, providers, and the program to review records of screening, identification and intervention related to hearing impairment in newborns.

Other support and consultation is available through a network of state Early Hearing Detection and Intervention (EHDI) programs. that have been functioning successfully. The Centers for Disease Control EHDI programs have established several committees on which Maine program staff and consultants participate. Other sources of support are, Karl White from NCHAM and Management (NCHAM) and regional consultants. Antonnia Maxon, PhD is an audiologist from Connecticut and has been identified as a regional consultant in New England through NCHAM. NCHAM is developing a curriculum for training audiologists to work with infants and young children that will be offered as regional workshops. This will further support Maine's efforts to enhance the skills of audiologists in this area.

Another source of information and support is the Division of Deafness within the Department of Labor, Bureau of Rehabilitation Services. This agency provides a program of services to deaf and hard of hearing citizens of Maine. These services include information and referral, advocacy, statewide registry and accessibility promotion.. The Division of Deafness will be a resource for the MNHP in identifying issues. and services that can be offered to families.

Identification of the Target Population and Service Availability

The target population for the MNHP includes newborns, health care providers including hospitals and parents.

A.) Newborns The target population for these activities includes all infants born in Maine, approximately 13,500 per year, their families and the infant's medical home. A system will be developed to serve hospital born infants as well as those who are born at home. Particular focus will be on infants who fail the initial hearing screening test (estimated 400) and require further evaluation and possible intervention and services (estimated 50). Maine's birth population is overwhelmingly Caucasian as reported on birth certificates representing 97% of newborns. Maine is slowly becoming more diverse. Other racial and ethnic origins represented are Asian (1.1%), African American (0.8%), Native American (0.7%) and 1% were listed as of Hispanic origins. English is the primary language, although French, Spanish and other languages are also spoken.

Multiple factors, unique to a rural state like Maine, contribute to problems with implementing universal hearing screening including awareness, hospital size, staffing, specialist shortages, geographic distance and changing service delivery. These system issues create challenges for families. Representatives from DFH have been meeting with audiologists, deaf advocates and the University of Maine (UMO) to discuss these issues and explore possible strategies to address concerns, including assurance that all components of the MNHP are family centered, sensitive and. culturally competent

B.) Health care providers including hospitals One major concern in Maine has been the lack of awareness of the importance of screening newborns for hearing impairment by providers and parents. The Division of Family Health (DFH) sponsored a one-day workshop in April 2000. It is more fully described in Need Assessment. 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. We anticipate there may still be some medical providers who do not promote nor support universal newborn hearing screening. To expand knowledge and understanding of the importance of universal newborn hearing screening, information will be provided to all health care providers through newsletters, information at professional meetings and mailings in an effort to increase their interest and support in this area.

Currently, follow-up procedures at those hospitals that are performing newborn hearing screening are inconsistent with respect to reporting and assuring follow-up appointments are made and that infants receive evaluation, intervention and services as needed. Guidance in the development of appropriate procedures/protocols will be provided to all hospitals.

Access to comprehensive audiologist evaluation and intervention in some areas of the state is a major problem. Diagnostic audiologic services are provided in a variety of settings in Maine, such as hospitals, physician offices (Ear, Nose and Throat specialists), and other agencies. There are fifty-two audiologists licensed in the state of Maine. Many audiologists do not have experience working with infants. Although distribution follows the population fairly consistently, there are areas that are clearly under-served. Northern and eastern Maine are identified as under-served areas. Access to evaluation and intervention could significantly impact the success of a universal newborn hearing screening program. The lack of professional expertise in the rural areas of the state is an issue that needs to be addressed. See Appendix D for map of Maine representing birth hospital and audiologist distribution.

The program will work with the University, the Maine Academy of Audiologists and NCHAM to increase capacity in evaluating and serving infants. Maine will participate with the NCHAM training program for audiologists in diagnostic methods for infants.

Incentive/improvement grants may assist hospitals in purchasing appropriate equipment, in networking with audiologists experienced in pediatric methods or to translate materials into other languages to meet the needs of families within their communities. See Appendix E for a draft agenda for this training.

C.) Parents: Parents are an essential part of the newborn hearing screening and intervention system. The Division of Family Health and its programs view parents as partners. It is essential for parents to be informed about the importance of hearing screening and follow-up. A booklet for parents has been developed and is distributed through birth hospitals and others locations. It is the intent of the MNHP that parents will be involved in decisions regarding all aspects of the screening program. They will be fully informed about all options and choices for their child and family. Information and services in all components of the MNHP will be accurate, family centered, sensitive and culturally competent.

Needs Assessment

The Genetics Program has been involved in needs assessment activities and monitoring hearing screening practices over the past three years through formal surveys, informal interviews and discussions at professional meetings.

A.) Hospital based screening: In 1999, the Genetics Program surveyed all thirty-two birthhospitals regarding current newborn hearing screening practices and future plans for implementation. A recent (December 2000) update to that survey had a response rate of 96% (31 hospitals). The survey revealed that 50% of birth hospitals (16) were screening their newborns prior to discharge with 3% of hospitals (1), referring newborns to other agencies or audiologists for hearing screening. One other hospital screening only at risk newborns in the neonatal intensive care unit (NICU), however, they plan to implement universal screening in the near future. Based on this survey, it is estimated that 68.6% of Maine infants had access to hospital-based newborn hearing screening by the end of 2000. At this time, it is not possible to confirm that all infants born at those hospitals were screened. Hospitals report they have equipment and are screening and it is assumed that all infants born at that hospital have access to screening. As the program is further developed and reporting is in place, more accurate statistics will be available. A report of the status of hospitals related to newborn hearing screening can be found in Appendix F.

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

Responses to the survey indicated that 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, upgrade of equipment or to develop or purchase materials, including materials written in other than English.

B.) Workshop Activities: In an effort to promote newborn hearing screening, the Division of Family Health (DFH) sponsored a one-day workshop in April 2000 and offered in three locations in Maine, Portland, Bangor and Presque Isle. 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, public & community 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 audiologic evaluation and intervention in some areas of the state. Participants shared strategies for acquiring equipment and networking with audiologists in their communities. All participants, as well as perinatal nurse managers, received copies of the publication "Early Identification of Hearing Loss-Implementing Universal Newborn Hearing Screening Programs". 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.

Another challenge relates to poor linkages between primary care providers and agencies serving children and their families. The April workshop brought the various stakeholders together. Hospital nurses, audiologists and early intervention staff were able to identify resources and other services within their communities. Surveys that were distributed increased awareness of the program/system issues and the needs of families. Our program has been able to identify some resources in particular communities and statewide. More work will need to be done to identify resources and services available to families and to assure access. The Newborn Hearing Program will work with the CSHN Program and others to promote referrals and linkages between agencies.

C.) 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 Part C, Early Intervention: Child Development Services, Developmental Evaluation clinics and Governor Baxter School for the Deaf: Early Childhood and Family Services Outreach. The overall response rate was 58% with responses from approximately 50% of CDS sites and DEC's and 100% response from Baxter School for the Deaf, Early Childhood and Family Services Outreach. 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 86% of the facilities (12). Baxter School for the Deaf is the only agency providing services statewide. Early intervention providers indicted that deaf and hard of hearing children between birth and 36 months of age are enrolled in their program. Only 9% of children enrolled (6 of 62) were less than 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 in northern Maine still may need to travel ninety miles each way to receive services while 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 most often provide services at least weekly. In addition to discussing audiology reports, audiologist and early intervention programs also discuss choices of communication/language method, hearing aids, fittings and settings or cochlear implants, 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. Presently American Sign Language is the primary method offered.

D.) Diagnostic services assessment: 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. Thus, geography contributes to problems with access. 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 a 42°/a 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.

E.) Further Needs Assessment Activities: The Maine Newborn Hearing Program in collaboration with other programs and agencies will continue to monitor access to services. The Maine Hospital Association and perinatal nurse managers from all birth hospitals will participate in other needs assessment activities to help identify areas of concern in the hospital based screening programs and referral systems.

The Maine Legislature has established a task force to perform a statewide needs assessment related to services provided through the Governor Baxter School for the Deaf. This needs assessment and the task force's recommendations will guide program development and possible expansion of services and support to those families already within that system and to assure access, to newly identified families. The task force members include administrators, providers and advocates from the Department of Education-Special Services, Baxter School for the Deaf Superintendent, Special Education Specialist, Public School Superintendent, University Linguistic Department, Department of Labor/Rehabilitation Services and Maine Center for the Deaf. The results of the needs assessment and recommendations from the task force will also be available to the Maine Newborn Hearing Program to assist in plans to strengthen the infrastructure for early intervention service delivery in Maine.

Collaboration and Coordination

This initiative benefits from existing collaborative relationships and partnerships among the Bureau of Health programs and various other programs and agencies in Maine. 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 lack of a traditional public health system in Maine, as noted previously, 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.

The MNHP is responsible to assure families of affected children have access to services by improving the infrastructure and establishing monitoring, tracking and follow-up activities. The Program will continue to work with partners to identify gaps in service and insurance coverage and work towards assuring all children receive services. The following organizations and agencies have been identified as partners on this initiative. Information on these partners is organized to coincide with the components of the universal newborn hearing screening system, such as administration and planning, screening and diagnosis, links to medical home, intervention and support and program evaluation. Documentation of these partnerships is included in letters of support and can be found in Appendix G.

A.) Administration and Planning

1. ) Advisory Board: An Advisory Board will be convened to provide input and guidance to the Bureau of Health in the development and implementation of this EHDI initiative. 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 protocols, 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.

2.) University of Maine (UMO), 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 setup 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 University is also planning a seminar and other opportunities to increase the pediatric audiology capacity in Maine.

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 , funded by Centers for Disease Control (CDC) will link these reports with other data, including vital records and clinic data. As this program continues to evolve, the data will be available to link with MNHP data.

B.) Screening and Diagnosis

1.) Perinatal Nurse Managers of Maine (PNMM) is a collaborative of nurse managers representing birthing unit in Maine. All birth hospitals are represented and the group has been meeting quarterly since 1984. The PNMM discuss issues of mutual interest, continuing education, practice standards, regulatory issues. The nurse managers collaborate and consult on policies and protocols. They have been instrumental in increase access to newborn hearing screening. The continued support and collaboration with the PNMM is essential to the success of the MNHP. Collaborative efforts will include increasing awareness and promotion of universal newborn hearing screening within the health care system (hospital administration, staff, medical care providers, parents and community early intervention programs).

2.) Maine Academy of Audiology (MAA) The Maine Academy of Audiology, representing approximately 40 audiologists statewide, is committed to the success of the program and has offered its expertise and support in planning and implementation. 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 and those diagnosed at a later age. The 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. An audiologist will participate in a New England Consortium to develop standard guidelines for early intervention. The Maine Academy of Audiology, representing approximately 40 audiologists statewide, is committed to the success of the program and has offered its expertise and support in planning and implementation. MAA will identify qualified audiologists who are interested in consulting with the MNHP. Contracts will be developed with two or more qualified audiologists to consult with hospitals, providers, and the program to review records of screening, identification and intervention related to hearing impairment in newborns. 3.) The National Center for Hearing Assessment and Management (NCHAM) provides information and resources concerning the components of early hearing detection and intervention. Karl White, PhD, director of NCHAM was the facilitator of the Newborn Hearing Workshop held in April 2000. He and others from NCHAM will continue to be used as a resource in standardizing guidelines, protocols and procedures and training of audiologists related to newborn screening.

C.) Medical Home

1.) American Academy of Pediatrics, Maine Chapter (including Medical Home Initiatives) is supportive of both university newborn hearing screening and intervention and is committed to the goal of securing medical homes for all CSHN. They are important partners in this initiative and will work with us to identify effective strategies for promoting and enhancing access to medical homes for infants through the MNHP. The MNHP will benefit from medical home projects coordinated by Maine pediatricians. The "Opening Doors into Rural Communities" Project is a partnership between the community of Augusta, the Early Intervention Research Institute at Utah State University and the federal Division of Services for Children with Special Health Needs. This project was designed to study and evaluate communities that are committed to integrating their services for children and families in ways that minimize gaps and duplication. Dr. Barbara Crowley at Kennebec Pediatrics is a key organizer for this initiative.

Another project promoting the medical home project in Maine is being coordinated by Winthrop Family Pediatrics Center. The project is a collaboration between the Winthrop Family Pediatrics Center and the Hood Center at Dartmouth University. Dr. H. Burtt Richardson is the project coordinator. He is also the AAP, District I CATCH (Community Access to Child health) Facilitator and is committed to helping pediatricians identify and secure quality medical homes for all children throughout Maine and the region. These two initiatives, as well as the support of the AAP Maine Chapter, will assist the MNHP to strengthen the connections to a medical home for all children identified through the Program.

D.) Intervention and Support

1.) The CSHN Program provides family centered community based care coordination that is culturally competent, community based and sensitive to the needs of families and acts as a third party payer for specialty diagnosis, treatment and planning services for income and medically eligible children in Maine. 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 bloodspot screening. The CSHN Program will work with the MNHP to assure a comprehensive referral and service system exists for affected children and their families. CSHN will contact the family and provide care coordination to assure that services are in place for the infant and family. Linking families with a medical home, public health nursing, Part C of IDEA and other resources and services is vital. CSHN prides itself in assisting families to access appropriate services. The program will also assist families by providing support to access insurance, either private. or public, working through the maze of claims, denials and appeals. The CSHN Program has in collaboration with Family Voices developed a family-to-family support network. This network will link veteran families (those experienced in negotiating the health care system) with newly identified families. Support provided to families by families has proven to be a great asset to this State where services and resources are often hours away from the community in which the family lives. This family support will be offered to all families. The CSHN Program's long standing relationship with pediatric care providers, Bureau of Medical Services (Medicaid), Department of Mental Health, Mental Retardation and Substance Abuse Services (Children with Special Needs), Child Development Services (Part C and B of IDEA in the Department of Education), insurance companies and others will ensure that children identified with a hearing loss will be connected to resources and services. This family-to-family network will supplement other family support efforts, such as Early Child and Family Services through the Governor Baxter School for the Deaf. The MNHP will also contract with a parent consultant to assure parent support and input is present.

2.) Public Health Nurses (PHN) are the key connection at the community level between the Bureau of Health programs, other state programs and the individuals and families that those programs serve. Public Health Nursing has the organizational capacity and infrastructure necessary to track infants lost to follow-up. One of the important roles of the Public Health Nurse is to coordinate area resources to meet the individual and family's needs. Currently, nurses visit families identified through the Newborn (bloodspot) Screening Program and the CSHN Program and are actively involved in all CSHN clinical activities. With the initiation of the Maine Newborn Hearing Program, families identified will be referred to PHN for a home visit and follow up services.

3.) Department of Education, Child Development Services (Part C, IDEA)

The Child Development Services System (CDS) is a statewide coordinated service delivery system. In Maine, there are sixteen regional sites serving children birth to under age six. Specifically, children with hearing impairment are served as they are at risk for developmental delays. CDS will work with the Newborn Hearing Program and Children with Special Health Needs Program to assure all- affected families have early diagnosis, intervention and support. They will participate in promotion of guidelines as a standard for all regional sites.

4.) Department of Education, Baxter School for the Deaf, Early Childhood and Family Services (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, home visits, 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. A Task Force has been established to assess the extent to which the ECFS programs meet the needs of families. Recommendations will be used to direct program planning.

E.) Surveillance, Tracking and Program Evaluation

1.) Centers for Disease Control (CDC) and Early Hearing, Detection and Intervention Programs (EHDI). Maine received funds in September 2000 from the Centers for Disease Control to establish an Early Hearing Detection and Intervention Program, consulting with the MNHP and is focused on developing the surveillance and tracking system for the Program. This cooperative agreement supports salary of two new positions, one contract with an audiologist, travel for two program people to attend a CDC sponsored meeting and travel and other expenses related to establishing the surveillance and tracking system. CDC has established several committees to facilitate sharing of information and planning between states. Individuals from Maine participate on these committees and have access to project managers and other EHDI programs for consultation.

2.) Maine Center for Public Health: An evaluation consultant will be identified that will assist in the development of an evaluation plan for monitoring progress and outcomes of the MNHP related to this grant proposal. For consistency among division programs and the initiatives within the Genetics Program, a Logic Model will be developed.

3.) University of Southern Maine (USM) is a partner with the Bureau of Health to increase epidemiology capacity. An epidemiology consultant has been identified through this existing relationship with USM to guide portions of the data analysis for the MNHP.

Goals and Objectives

The overall goal of this initiative is to develop and implement a statewide universal newborn hearing screening program and to assure all Maine infants, children and their families have access to early hearing screening, evaluation and intervention services, including links to a medical home, Part C Early Intervention Services (CDS) and ongoing family-to-family support. Surveillance, of these activities will provide data for evaluation of the Maine Newborn Hearing Program (MNHP) and the system of services for children with hearing impairment.

Goal 1: By August 31, 2002, to develop and implement a statewide universal newborn hearing screening program,

Objective 1: Facilitate the establishment of an Advisory Board and participate as program staff.

Objective 2: Collaborate with CSHN Program, Maine Academy of Audiology and other consultants to establish screening protocols, guidelines for evaluation, intervention and services.

Objective 3: Provide technical assistance and grant support to hospitals and audiologists for development and/or improvement of hospital based hearing screening programs.

Objective 4: Promulgate rules outlining roles and responsibilities of hospitals, providers and the Program, including consent procedures, communicating results and referrals for services.

Goal 2: By August 31, 2002, increase access to audiologic diagnostic evaluation services for infants.

Objective 1: Identify availability and distribution of audiologists experienced in evaluating infants and young children.

Objective 2: Work with the University of Maine, Maine Academy of Audiology and National Center for Hearing Assessment and Management to expand audiology expertise working with infants through out the state. .

Goal 3: By August 31, 2002, increase access to early intervention services including parent to parent support.

Objective 1: Promote linkages and referral networks with existing agencies and resources

Objective 2: Develop and distribute resource guide for families of hearing impaired children.

Goal 4: All infants identified through the MNHP will have an identified medical home.

Objective 1: Promote medical home concept for all infants identified through the MNHP.

Objective 2: Increase awareness and knowledge of primary care providers regarding hearing screening, diagnosis, intervention and services.

Goal 5: Increase annually the number of infants who are screened, received appropriate diagnostic and intervention services in a timely way.

Objective 1: to establish accurate baseline data for screening diagnostic and intervention services.

Objective 2: to increase by 10% annually, up to 95%, the number of newborns screened prior to discharge or by 30 days of age.

Objective 3: all screening hospitals will have a refer rate of less than 4% within six months of beginning a screening program.

Objective 4: to increase by 10% annually, up to at least 80%, the number of infants receiving audiologic diagnostic evaluation by three months of age.

Objective 5: to increase by 10% annually, up to at least 80%, the number of infants receiving appropriate intervention and services by six months of age.

Required Resources

Several hospitals have financial concerns about equipment, and their ability to implement or improve their screening programs. This project proposes to provide technical assistance to hospitals in developing programs and also incentive grants for hospitals to establish or improve screening systems. Funds could be used to defray the cost of purchasing or updating screening equipment, for improving system by contracting with an audiologist to oversee the program or expanding to a two tier screening f system or for translating materials into other languages to meet the needs of families in their community. As proposed 5 grants would be dispersed totaling $35,000 for each year of this grant.

Currently, the Maine Newborn Hearing Program does not have an audiologist on staff. The CDC cooperative agreement will support one audiologist to consult with the program. As previously mentioned there are areas of the state that have limited access to audiologists and access to pediatric audiologists is even more limited. This project will contract for 2-3 regional audiologists to form a team to consult with hospitals, providers and the Program on matters of screening, evaluation and intervention. These contractual agreements will cover consultation services only. They will not cover direct audiology services for families, as these are expected to be reimbursable costs. As proposed $15,000 to cover contracts and $2400 for instate travel for three audiology consultants each of the four years of this grant.

Training and continuing education for individuals who are involved in the screening process is important to the success of this program. The project will provide scholarships individuals to attend a conference on newborn hearing screening and assessment and will also provide scholarships for audiologists to participate in the NCHAM training. This will be cost an estimated $5,000 for each year of this grant.

Travel costs specific to the activities of this grant will be charged to this grant, such as travel to an MCHB meeting for two partner representatives. Travel for two program staff will be paid with CDC funds for this joint meeting.

A contract with a parent consultant will be developed to provide input to the MNHP and others involved in the hearing screening system. This contract will be for $5,000 per year. Other consultant agreements will be developed to supplement program staff and will include epidemiology consultation at $2,000 per year and evaluation consultation at $2,000 per year. Interpreter services will also be available at meetings and functions through support from this grant at $1500 per year.

All funds received will be used only for the activities described in this application. All required fiscal and accounting procedures will be followed.

Project Methodology

The overall goal of this project is to developing and implementing the statewide universal newborn hearing screening program. Goals and objectives are described below and focus on the methodology for each component of a comprehensive screening system. A draft of screening protocols and flow chart can be found in Appendix H.

The Newborn (bloodspot) Screening Program will be used as a model for screening and tracking. This program identifies a contact/liaison at each birth hospital who is responsible for that hospital's program. This program also has the most accurate information on medical home for each infant that will facilitate follow-up. Confidentiality and privacy will be protected by all agencies and programs as with all health care information as defined by state law.

Goal 1: By August 31, 2002, to develop and implement a statewide universal newborn hearing screening program,

Objective 1: Facilitate the establishment of an Advisory Board and participate as program staff.

Objective 2: Collaborate with CSHN Program, Maine Academy of Audiology and other consultants to establish screening protocols, guidelines for evaluation, intervention and services.

Objective 3: Provide technical assistance and grant support to hospitals and audiologists for development and/or improvement of hospital based hearing screening programs.

Objective 4: Promulgate rules outlining roles and responsibilities of hospitals, providers and the Program, including consent procedures, communicating results and referrals for services.

Goal 1: Methodology: Using the legislation as a guide, a list of potential members for the Advisory Board will be submitted to the Governor's office. A meeting will be planned and convened by November 30, 2001 pending action by Governor. The Program will collaborate with a regional consortium, consultants and other partners developing guidelines for evaluation and interventions. These guidelines will be presented for review by involved parties and the Advisory Board by February 28, 2002. Once approved these guidelines will be distributed to hospitals, professionals and others interested or involved in the screening program. Technical assistance will be provided to hospitals by the MNHP and a request for proposals will be developed to identify hospitals to receive incentive grants and awards will be announced by August 31, 2002. Rules and regulations outlining responsibilities of hospitals, providers and the program, after consultation with stakeholders, will be developed for review by partners and the Advisory Board and promulgated by February 28, 2002. The Program will continue to work with the University for database development to support the MNHP. Formal agreements will be negotiated for data linkages.

Goal 2: By August 31, 2002, increase access to audiologic diagnostic evaluation services for infants.

Objective 1: Identify availability and distribution of audiologists experienced in evaluating infants and young children.

Goal 2: Methodology: The MNHP will work will MAA to develop comprehensive survey for audiologists to provide accurate information on the availability and distribution of qualified audiologists with experience evaluating infants and young children. Scholarships will be provided for audiologists interested in participating in a regional training to increase skills in working with infants. Discussions will take place with the University, MAA and NCHAM to facilitate this training program. Other opportunities to increase skills will also be explored.

Goal 3: By August 31, 2002, increase access to early intervention services including parent to parent support.

Objective 1: Promote linkages and referral networks with existing agencies and resources

Objective 2: Develop and distribute resource guide for families of hearing impaired children.

Goal 3: Methodology: Program staff will meet identify and meet with those agencies that provide early intervention and other services for infants with hearing impairment. This will include, but may not be limited to, Children with Special Health Needs Program, Public Health Nursing, Part C: Early Intervention: Child Development Services, Baxter School for the Deaf Early Child and Family Services and the Division of Deafness within the Department of Labor, Division of Rehabilitation Services, and other agencies and organizations as may be identified. This will allow these representatives to become more aware of each other and the services they provide. A parent consultant will be hired under a contract who will work with the Program to develop a resource guide for families of infants and children with hearing impairment. This guide will be distributed to all partners involved in the care or service of infants, children and their families. It will also be provided to all parents of infants identified through the MNHP and on request. Information on these services will be included in professional newsletters and press releases.

Goal 4: All infants identified through the MNHP will have an identified medical home.

Objective 1: Promote medical home concept for all infants identified through the MNHP.

Objective 2: Increase awareness and knowledge of primary care providers regarding hearing screening, diagnosis, intervention and services.

Goal 4: Methodology: The MNHP will collaborate with the Newborn (bloodspot) Screening Program to identify a medical home responsible for care of infants identified through the screening program. Discussions will be held with representatives from AAP and the medical home projects to develop effective approaches to identifying and assuring quality medical homes. Information on the components of comprehensive universal newborn hearing screening and the role of the medical home will be provided to all pediatric care providers. The identified medical home will be included in all correspondence with families and providers related to services for affected infants. Information on available services will be included in professional newsletters and press releases.

Goal 5: Increase annually the number of infants who are screened, received appropriate diagnostic and intervention services in a timely way.

Objective 1: to establish accurate baseline data for screening diagnostic and intervention services.

Objective 2: to increase by 10% annually, up to 95%, the number of newborns screened prior to discharge or by 30 days of age.

Objective 3: all screening hospitals will have a refer rate of less than 4% within six months of beginning a screening program.

Objective 4: to increase by 10% annually, up to at least 80%, the number of infants receiving audiologic diagnostic evaluation by three months of age.

Objective 5: to increase by 10% annually, up to at least 80%, the number of infants receiving appropriate intervention and services by six months of age.

Goal 5: Methodology: Technical assistance and grant support will be provided to hospitals to implement or improve their hearing screening programs. Screening protocols will include that parents be informed about the screening test and their right to decline such testing. The will also be informed that the hospital is required to report the results of screening and follow-up testing to the MNHP. Any further sharing of information on any particular child, for example, to facilitate referrals for services will require specific parental consent. The MNHP will implement the reporting system, surveillance and tracking system, including linkages to other MCH databases such as electronic birth certificates to establish accurate baseline data for screening, diagnostic and intervention services. The MNHP will contact the family of any infant who missed an initial newborn hearing screen (without documentation that the parents declined testing) or other recommended follow-up appointment for comprehensive diagnostic evaluation or intervention. Once hearing impairment is confirmed, the CSHN Program will provide care coordination and also case management for those infants, including referral for services and family to family supports and other possible assistance as described previously. The system in place for reporting, surveillance and tracking relating to the MNHP will be used to collect data to measure successful outcomes of the Program.

Evaluation

An epidemiology consultant has been identified through an existing relationship with the University of Southern Maine (USM) to guide data analysis. An evaluation consultant will be identified through the existing relationship with the Maine Center for Public Health to assist in further development of the evaluation plan.

To provide consistency among Division programs and Genetics Program initiatives, the evaluation for this initiative will use the Logic Model approach to monitor progress towards achieving projected timelines, goals and objectives and evaluate outcomes. Evaluation is recognized to be an ongoing and comprehensive process with revisions to plans and activities at all points in the system to improve outcomes. Reports will be provided to hospitals and other screeners and reporters on performance and findings on a regular basis. Data from the MNHP will be used to monitor and evaluate

screening rates, % of infants born at each birth hospital that have a hearing screen prior to discharge, % of infants screened by 1 month of age, % of infants whose parents refuse screening,
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, bilateral, mild, mod, severe or profound hearing impairment,
access to intervention, Of those who were diagnosed to have hearing impairment, how many received medical evaluation, intervention and what kind of intervention was chosen by the family (by 6 months), what other intervention services were received by the family including Part C: Child Development Services, Baxter: Child and Family Services, family-to family support and amplification and communication support,
false positive rates, Of those who were evaluated following a refer result on the initial screen, how many were found to have a normal level of hearing,
false negative rates. 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.
prevalence and trends of hearing impairment compared to expected rates.
timeliness and completeness of reporting from hospitals and providers. Tracking system analysis will provide information on reporting patterns.
obtain input and document concerns from families of infants and others involved in the system regarding the early hearing detection and intervention process through surveys or focus groups. Consumer representatives and others participating in the Advisory Board will also provide input.
success at meeting projected timeline.

Program activities and results of evaluation activities will be prepared in a report to the legislature and also distributed to all partners, stakeholders, the Advisory Board CDC and HRSA/Maternal & Child Health Bureau.

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. Joint Committee on Infant Hearing, Year 2000 Position Statement: Principles and guidelines for Early Hearing Detection and Intervention Programs, Am J Audiology, 2000, 9: 9-29.

5. 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.

6. 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.

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

8. White, KR, Maxon, AB. Early Identification of Hearing Loss: Implementing Universal Newborn Hearing Screening Programs.