PROJECT NARRATIVE

CHAPTER I: IMPLEMENTATION OF A STATEWIDE EARLY HEARING DETECTION AND INTERVENTION SYSTEM IN IDAHO

1.1 Purpose of the Project

An average of 33 babies with congenital loss are born every day in the United States, making it the nation's most frequent birth defect. According to the Healthy People 2000 report, issued by the Department of Health and Human Services:

If hearing impaired children are not identified early, it is difficult, if not impossible, for many of them to acquire the fundamental language, social, and cognitive skills that provide the foundation for later schooling and success in society. When early identification and intervention occurs, hearing impaired children make dramatic progress, are more successful in school and become more productive members of society. The earlier intervention and habilitation begin, the more dramatic the benefits. Unfortunately, the average age at which children with significant hearing impairment ... are identified in the United States is somewhere between 24 and 30 months of age.

Given the importance of identifying hearing loss as early as possible, agencies in Idaho have been working for the last several years to implement hospital-based newborn hearing screening programs. A survey conducted by the Idaho Consortium on Newborn Hearing Screening in 1996 showed no hospitals in Idaho with Universal Newborn Hearing Screening (UNHS) programs. By 1997, there were 3 hospitals with UNHS programs; and by the end of 1999, 14 of the 37 birthing hospitals in Idaho had implemented UNHS programs.

Even though substantial progress has been made in implementing hospital-based newborn hearing screening programs, it is important to recognize that such screening is only the first step in a process to identify children with hearing loss and provide them and their families with timely and appropriate medical, audiological, therapeutic, and educational services. Unfortunately, many hospitals in Idaho have struggled in making these connections. Therefore, this grant is written from the perspective that for UNHS programs to achieve their potential, they must be appropriately coordinated and linked with medical homes, diagnostic evaluations, and early intervention services in a way that is family centered and culturally competent. Throughout this proposal, we will use the term Early Hearing Detection and Intervention (EHDI) system to describe a system which includes all of these components.

The purpose of this project is to develop a statewide EHDI system in Idaho which is sufficiently institutionalized that it will continue after federal funding ends. The project is categorized as an Implementation (statewide) Project according to the guidelines in CFDA #93.110ZZ. As a result of the activities proposed herein, all newborns in Idaho will:

1. receive physiological hearing screening prior to hospital discharge;
2. be connected with a medical home;
3. receive audiological evaluation by 3 months of age if they do not pass the screening test; and
4. will be enrolled before 6 months of age in an appropriate early intervention program if a hearing loss is identified.

1.2 Organizational Experience and Capacity

The project will be conducted by the Idaho Council for the Deaf and Hard of Hearing (CDHH) with collaborative assistance from a wide range of agencies and groups, including, but not limited to, the Idaho Infant Toddler Program, the Idaho School for the Deaf, the Interagency Coordinating Council, the Deaf Connection, the Idaho Chapter of the American Academy of Pediatrics, and the National Center for Hearing Assessment and Management at Utah State University. Established in 1991, CDHH is an independent state agency which reports directly to the Governor's office. CDHH is governed by a nine-member council. All programs and daily operations are administered by an Executive Director and other staff. The Council's goal is to improve the quality of life for Idahoans who are deaf or hard of hearing by providing information, serving as an advocate, and increasing services and access to them.

By statute, the CDHH has nine voting members appointed by the Governor (two persons who are deaf, the parent of a child who is deaf, two persons who are hard of hearing, the parent of a child who is hard of hearing, an audiologist, an interpreter for the deaf, and a physicianBsee list of current members on page 1 of the Appendices). Ten ex-officio members represent organizations that provide services to persons who are deaf or hard of hearing. State law outlines the following responsibilities for the Council to meet the needs of persons who are deaf or hard of hearing:

• Increase access to employment, educational, and social interaction opportunities.
• Increase awareness of the needs through educational and information programs.
• Encourage consultation and cooperation among agencies, departments, and institutions.
• Determine the extent and availability of services, the need for services, and make recommendations for changes.
• Coordinate, advocate for, and recommend the development of policies and programs that provide full access.
• Monitor consumer protection.

In 1995, CDHH was instrumental in forming the Idaho Newborn Hearing Screening Consortium, and CDHH staff provide secretarial support and assistance for all of the Consortium's activities. This group, consisting of all of the relevant stakeholders in EHDI systems (see list of members on page 2 of the Appendices), has been actively involved in promoting the establishment of universal newborn hearing screening programs over the past four years. For example, the Consortium has organized workshops on newborn hearing screening, developed and distributed public awareness materials, and paid for consultants to visit Idaho to assist with the implementation of newborn hearing screening programs (examples are described on pages 2-7 of the Appendices).

In 1999, Council members voted to establish the achievement of universal newborn hearing screening as one of five Council priorities. As a result of that, CDHH has continued to work with the Consortium to make hearing screening of newborns the standard of care in all Idaho hospitals and to develop feasible follow-up procedures. As a part of these efforts, CDHH recently developed a resource guide for parents of children with hearing loss and distributed that to all regional early intervention programs, members of the Consortium, and other groups who are involved with EHDI programs in the state (see pages 13-14 in the Appendices). In all of these activities, the Council has coordinated closely with the various state agencies who have responsibility for children with hearing loss, including the Title V agency (see letters of support beginning on page 34 of the Appendices).

1.3 Administration and Organization

The Council for the Deaf and Hard of Hearing is an independent agency appointed by and accountable to the Governor of the state. It is placed for administrative and budgetary purposes within the Department of Health and Welfare, where the Title V agency is also located. The administrative and organizational structure for this project is shown in Figure 1. As an independent agency who is accountable only to the Governor, CDHH is in an ideal position for assisting with the implementation of new programs, such as the EHDI system, because it is free from many of the normal bureaucratic constraints that would otherwise be present.

As a part of developing an EHDI system, project staff will collaborate with a variety of agencies and groups. As shown in Figure 1, the Project Director will be Pennie Cooper, CDHH Executive Director. A project coordinator, Curt Whitcomb, will be hired to work with hospitals in implementing and improving EHDI programs. Carrie Mori, who has been the Co-Chair of the Consortium over the past four years, has agreed to serve as the agency liaison on the project staff to ensure that collaborative activities with existing agencies are coordinated and appropriately focused (and more detail about the collaborating agencies is given in Section 1.7). A data analysis specialist will be hired to coordinate the state EHDI database and follow up with hospitals and health care providers to ensure that babies referred for diagnostic evaluations receive timely and appropriate follow-up services. Abbreviated vita for each of these people are on pages 8-12 of the Appendices.

(Figure 1.)

1.4 Available Resources

CDHH receives approximately $100,000 per year in core support as a part of the legislative appropriation. Specific projects, such as developing a statewide EHDI system, must be funded through outside moneys, such as this grant. The core support covers the Director's salary, office space and equipment, and secretarial support for the normal activities of the Council. This provides the basic infrastructure in which this project will be housed. Other resources which will be available to address the goals of this project will be available from groups such as the Idaho Parent Training and Information Center (Idaho Parents Unlimited), the Idaho School for the Deaf, the Idaho Parent Infant Program, and other groups described in Section 1.7. All of these groups have responsibilities to serve children with hearing loss, either specifically or as a part of a larger constituency. However, none of them have been focusing specifically on the development of an EHDI system. This grant provides the resources necessary to coordinate the existing resources from other agencies and to target them on the development of a comprehensive EHDI system, while at the time addressing gaps which no one is currently addressing.

1.5 Identification of Target Population and Service Availability

The latest report from the National Center for Health Statistics showed that Idaho had 18,582 births per year. Of those, 84.2% were Caucasian, 12.7% were Hispanic, 1.5% were American Indian, 1.3% were Asian or Pacific Islander, and 0.4% were African American. The target population for this project is all babies born in Idaho.

Approximately 78% of Idaho babies are born in hospitals who have established universal newborn hearing screening programs. Data collected by the Consortium, however, suggest that most of these hospitals are not achieving 100% coverage, and all of them are struggling with connecting babies referred from the screening program with appropriate diagnostic and early intervention services. Culturally-competent family support (such as providing appropriate services to parents of Spanish-speaking children) continues to be a problem, and primary-care physicians are not sufficiently involved in newborn hearing screening activities. Although there is enthusiastic support for the concept of a comprehensive EHDI system, major gaps still exist. These gaps will be addressed through the proposed project with the assistance of the various collaborating agencies described below, as well as regional and national resources, such as Idaho State University and the National Center for Hearing Assessment and Management (NCHAM) at Utah State University (see letters of support).

1.6 Needs Assessment

Consortium members and CDHH staff have been working to implement an EHDI system in Idaho since 1995. Given the constituency of the Consortium, needs assessment information has been regularly gathered as a part of the Consortium's quarterly meetings. In addition, hospital surveys were conducted in 1996, 1997, and 1999 (a summary of data from those surveys is included in pages 15-20 of the Appendices). In October 1999, CDHH provided funding and staff support for the Consortium to organize a statewide meeting on newborn hearing screening. All programs who were operating universal newborn hearing screening programs and all other birthing facilities were invited to attend. As a part of that meeting, needs assessment data were collected about what people viewed as the most significant obstacles in developing an effective EHDI system within the state.

From the various needs assessment data which have been collected, the following have been identified as the most important unmet needs, barriers, and special problems to overcome:

• Lack of resources to provide training, coordination, and tracking and follow-up of referred babies on a statewide basis.
• Expansion of universal newborn hearing screening programs to all hospitals in the state.
• Difficulty tracking babies through the process of diagnosis and enrollment in early intervention programs to ensure that timely and appropriate services are received.
• Lack of a coordinated, well-defined system for providing culturally-appropriate family support.
• Lack of awareness and commitment by the medical community to participate in and support an EHDI system.
• Difficulty getting health insurers to reimburse hospitals or parents for newborn hearing screening procedures.

These unmet needs and barriers have served as the basis for developing the strategies proposed for this project. Although many hospitals are now screening babies, Idaho does not have an effective EHDI system.

1.7 Collaboration and Coordination

Identifying and providing appropriate services to hearing-impaired infants and toddlers and their families requires input from many different stakeholders and disciplines. Components of this service system are already in place among Idaho state and private agencies and groups. In some cases, those groups serve a broader constituency of which children with hearing loss are one part. In other cases, their efforts are focused specifically on children with hearing loss and their families. One of the reasons for creating the Council for the Deaf and Hard of Hearing (CDHH) was to coordinate the efforts of these various groups.

This grant will enable CDHH to focus specifically on the creation of a statewide EHDI system. Continuation of the activities most relevant to EHDI has already begun. For example, in March 2000, CDHH, in conjunction with the Idaho Consortium on Newborn Hearing Screening and the Idaho Infant Toddler Program, has planned three regional meetings to which the coordinator for each hospital newborn hearing screening program has been invited to attend with a team that works with them to ensure that infants and their families receive appropriate follow-up services. It has been suggested that they include parents, early intervention (Part C) staff, a child find coordinator, Idaho School for the Deaf and Blind regional consultant, audiologists, and a physician (either pediatrician and/or ENT). The one-day training will include information about the equipment that is used for screening (what is does and does not screen, a time for networking by the participants, and information about the latest intervention procedures. Activities such as this will continue and be expanded as a part of the grant.

Although the number of collaborators will expand as the work of the grant continues, the collaborators who are thought to be most important at this time and who have agreed to participate in the project activities are described below.

1.7.1 The Idaho Infant Toddler Program

The Idaho Infant Toddler Program is housed in the Department of Health and Welfare, who is the Part C lead agency for implementation of statewide, interagency, coordinated, comprehensive, early intervention services to all infants and toddlers with disabilities and their families. The program is responsible for ensuring that the following components are available to the families of Idaho:

• Public Awareness and Community Education Campaigns
• Child Find - identification of children who would benefit from services
• Evaluation and Assessment - activities to determine a child's current developmental status
• Individualized Family Service Planning - a service plan which addresses the child's and family's unique needs
• Service Coordination - activities which ensure needed services are available, coordinated, and cost-effective
• Procedural Safeguards - parents' rights which guarantee timeliness and confidentiality
• Transition Planning - procedures to help families access appropriate services when a child exits the Infant Toddler Program
• Personnel Training and Standards - review and modification of standards for service providers
• Program Self Assessment - quality assurance and monitoring activities
• Early Intervention Services - therapeutic and support services provided in a Anatural setting@ such as the home or a child-care center

All children identified with hearing losses are eligible for services from the Idaho Infant Toddler Program. The Director of the Idaho Infant Toddler Program is a member of the Consortium for Newborn Hearing Screening and works closely with CDHH staff.

1.7.2 The Idaho School for the Deaf and Blind

An early intervention program for children with hearing loss is operated by the Idaho School for the Deaf and Blind (ISDB). There is also an Outreach Program which serves families who have a child, newborn to five years of age, with a hearing or vision loss. That hearing loss may range from a mild fluctuating loss due to chronic middle ear infections, to profound deafness.

ISDB early intervention activities are administered by an Outreach Coordinator, ten Parent School Advisors (PSA) with at least one PSA located in each of the seven regions in Idaho (see map of regions and location of current UNHS hospitals on page 21 of the Appendices). The Early Intervention Program provides consultation services to regional service providers, preschools, and private day care centers. The program also provides information to other professionals, such as public health nurses, social workers, psychologists, and physicians. The consultative and direct services that are available include: family support; parent workshops; direct home intervention; suggestions and demonstration of appropriate methods to parents and preschool teachers; interagency high risk screenings, demonstration of appropriate early intervention methods to parents, and direct home intervention. The Parent Advisor also provides assistance in the development of an Individualized Family Service Plan (IFSP).

ISDB philosophy is that each family should have the opportunity to obtain comprehensive services for the child, parents, siblings, and other family members, as well as for other significant caregivers. Their goal is for each family member to be able to communicate fully and comfortably with the deaf or hard-of-hearing child. They believe it is important to provide each family with information of the entire continuum of communication forms: American Sign Language (ASL), Signed English, and Oral/Aural, and that parents have the responsibility of selecting a communication mode for their child.

ISDB works with each family individually, providing support for them to meet their needs and the needs of their child. They believe that parents are the primary educators of their children and, therefore, need to be fully informed on child development, language development, and social-emotional development, as well as the impact of hearing loss on those areas. ISDB PSAs use the SKI-HI Curriculum, which was designed in Utah, to work with parents of deaf/hard-of-hearing children in the home environment. The parent advisor has four main roles: understanding the child and determining the child needs, understanding the family and determining the family needs, conducting effective home visits, and providing the family support and encouragement.

1.7.3 Idaho Parents Unlimited

Idaho Parents Unlimited (IPUL) is the federally-funded Parent Training and Information Center for Idaho. IPUL is a part of a nationwide network of centers which provides educational and informational resources for parents of children with disabilities. IPUL has a central office in Boise that acts as the hub for material development and dissemination, as well as housing a loaning library. Trained parent education coordinators provide resources and support to local Idaho families of children with disabilities. Local workshops are held to meet the identified needs of parents in each region. In addition, the parent education coordinator in each of the seven IPUL regions (which are the same as the Department of Health and Welfare Regions) must identify and train at least four regional volunteer resource parents to provide assistance to local parents. This provides 28 volunteers statewide who provide individualized assistance regarding concerns about a child's needs. IPUL also publishes a bi-monthly newsletter for parents, distributes information about video and written information and educational materials, conducts an annual statewide parents conference, and conducts periodic regional workshops to provide local education and information.

1.7.4 The Deaf Connection

The Deaf Connection is a private not-for-profit group established by parents to provide support, networking, fellowship, community outreach, and education for families and friends of deaf and hard-of-hearing children. They provide role modeling, mentoring, support and language examples through activities, and encourage community networking and education to better understand what it means to be deaf.

The Deaf Connection staff have set a goal that every family where a child has been identified with a hearing loss will be contacted within one month of when the child is identified. Referrals are sent to the Deaf Connection from parents, hospitals, physicians, early intervention specialists, and others who know of a family where there is a child who has been identified as deaf or hard of hearing. They are developing a plan for a series of workshops on the myths and facts of deafness and other issues regarding children with hearing loss.

1.7.5 Idaho's Interagency Coordinating Council

Idaho's Interagency Coordinating Council (ICC) is charged with advising and assisting the Department of Health and Welfare and other agencies in implementation of all activities and services for infants and toddlers who have disabilities. The Council's membership is appointed by the Governor and reflects a broad array of stakeholders and parents.

To ensure that activities are responsive to the local needs of all Idaho families, seven Regional Committees have been established (see map on page 21 of the Appendices). A representative from each regional committee attends ICC meetings, presents issues, and provides input regarding the provision of early intervention services throughout the state. Council members are responsible to review emerging issues, gather information, and make policy recommendations; advocate for services and funding which will positively impact children and families; and educate the community about the importance and availability of early intervention services.

1.7.6 Professional Organizations for Pediatricians and Family Physicians

Consortium members have already been working closely with the Idaho Chapter of the American Academy of Pediatrics and the Idaho Academy of Family Physicians. These organizations are involved in providing continuing medical education, advocacy, and legislative activities to support the provision of effective health care to their constituents. Presidents of both groups have written letters supporting this proposal and have agreed to work with us in ensuring that all babies are assigned to a medical home and in distributing materials to their members and arranging for presentations on EHDI at their annual meetings.

1.8 Goals and Objectives

The goal of this project is to establish an effective EHDI system for the state of Idaho which can be sufficiently institutionalized by the end of the four-year grant that it will be maintained without extramural funding, such as will be provided by this grant. The specific objectives that will be completed by the end of four years are as follows:

• 99%+ of all newborns in Idaho will be screened for hearing loss before they are discharged from the hospital.
• Infants who do not pass the screening test will receive an audiological evaluation by 3 months of age.
• Infants identified with a hearing loss will be enrolled in an appropriate early intervention program before 6 months of age.
• Less than 10% of infants who fail the screening process will be lost to follow-up before they complete the diagnostic procedures and, if appropriate, are enrolled in early intervention programs.
• All infants screened for hearing loss will be connected with a medical home.
• Families of all newborns will be provided with culturally-competent support as a part of the screening, referral, diagnosis, and early intervention enrollment process as judged by evaluation data collected from a sample of parents.
• All families of newborns will have adequate private and/or public insurance to pay for newborn hearing screening and any necessary diagnostic and intervention services.
• EHDI services will be organized so that families can use them easily, can participate in decision making at all levels, and are satisfied with the services they receive as judged by evaluation data collected from a sample of parents.

The specific activities used to address the above objectives are described in Section 1.10.

1.9 Required Resources

Resources from this grant will be used to establish an Idaho Early Hearing Detection and Intervention (EHDI) system. The Department of Health and Welfare (which is the Title V agency in Idaho) and the Governor's office have decided that the EHDI system can be most efficiently operated if it is administered by the Council for the Deaf and Hard of Hearing (see letters of support in the Appendices). Additional staff to be hired by this project include an EHDI System Coordinator, an Agency Liaison, and a Data Analysis Specialist, and they will work as a part of the CDHH staff as described in Section 1.10. Grant funds will be used only for the purposes described in this proposal, and necessary fiscal control and accounting procedures already in place for CDHH activities will be used to ensure that funds are appropriately spent.

1.10 Project Methodology

During the first year of the project, hospital-based screening will be expanded to enough hospitals that more than 95% of all babies in Idaho will be born in hospitals with UNHS programs. Furthermore, the basic components of a complete EHDI system will be implemented, and evaluation data will be collected to guide adjustments and additions to the system during subsequent years. To achieve these goals during the first year, the following activities will be conducted:

1.10.1 Expansion of Hospitals with UNHS Programs

Of the 23 Idaho hospitals who do not now have UNHS programs, 15 have fewer than 100 births per year. Based on the results of previous surveys and needs assessments conducted by the Consortium for Newborn Hearing Screening, it is expected that the smallest hospitals will have the greatest difficulty implementing UNHS programs. If the eight largest hospitals (with annual births ranging from 100 to 740) were to implement programs, over 95% of all babies would be born in UNHS hospitals. To encourage these hospitals to implement hearing screening programs, a grant competition will be announced on April 1, 2000 in which hospitals will be able to apply for ten mini-grants of $2,000 to assist with the purchase of equipment (the grant competition will be structured similarly to one done very successfully in Iowa in 1998Bsee pages 21-23 in Appendices). Hospitals will be free to choose the type of equipment they would like to purchase, and must commit to implement a UNHS program within two months of receiving the grant. If there are more than ten applicants, preference will be given to those who have developed the best procedures for linking babies with appropriate diagnostic and intervention services and those who have the best plans for serving traditionally under-served areas and populations. Hospitals who are not selected will still be encouraged to implement UNHS programs and will be assisted to the extent possible with grant resources. For example, the National Center for Hearing Assessment and Management (NCHAM) at Utah State University has committed to give loaner equipment for six months at no charge to any Idaho hospital who wants to participate (see letter of support). These hospitals will also be able to participate in any training workshops and technical assistance activities done as a part of the grant.

Hospitals with less than 100 births per year who do not choose to implement UNHS programs during year #1 will also be able to refer babies born at their hospitals to one of the seven Regional Early Intervention Programs in Idaho. These Regional Programs have all purchased equipment appropriate for newborn hearing screening and have agreed to conduct newborn hearing screening at no cost for these hospitals. As a part of the evaluation activities described later, the efficiency of this alternative to hospital-based screening will be assessed.

To assist hospitals in deciding whether and how to apply for the mini-grants, project staff, assisted by NCHAM at Utah State University, will conduct three regional workshops to demonstrate hands-on screening with babies of the various types of equipment available for newborn hearing screening, outline the procedures necessary to establish a successful EHDI program, distribute examples of procedures and materials used by successful hospital-based programs from around the country, and provide technical assistance regarding the grant application (see examples of agenda and materials to be used in these workshops on pages 23-27 of the Appendices). These regional workshops will be held in early May, grants will be due June 15th, and programs must be started by September 1st. To encourage all hospitals to participate, the format for grant applications will be five pages or less.

1.10.2 Establish a System for Referral and Audiological Diagnosis

Newborn hearing screening is only beneficial if babies who do not pass the screen are provided with timely and appropriate audiological diagnosis. Unfortunately, this has been a serious problem with existing UNHS programs in all parts of the country, including Idaho. This issue will be addressed during the first year in two ways. First, because not all audiologists have the interest or the equipment and experience to do diagnostic evaluations for babies from birth to three months, a survey will be conducted of all audiologists in Idaho to determine which ones are interested in being a part of a statewide Pediatric Audiological Network. The format and procedures for this survey will be modeled after similar surveys conducted previously in Utah and Hawaii (see draft of questionnaire on pages 29-31 of the Appendices). Based on the results of the survey, a list will be compiled and distributed to all birthing hospitals of people to whom it is recommended that babies who do not pass the screening should be referred.

Second, based on procedures used successfully in statewide systems in Mississippi and Utah, newborn hearing screening staff in UNHS hospitals will be asked to complete a standard form for all babies who do not pass the hearing screen (estimated to be 2% -1% of all births). The form will contain contact information about the baby, the name of the baby's primary care physician, information about the audiologist the parent has chosen to do the audiological evaluation, and permission by the parent for the hospital and the audiologist to share information on the results of the diagnostic evaluation with the state coordinating office (see example of the form used in Utah on pages 32-33 of the Appendices).

The form will be completed on quadruplicate, carbonless paper with copies for the parent, the audiologist, the hospital, and the state coordinator. The back of the parent and audiologist copies will have a space for the audiologist to report the results of the diagnostic evaluation. To be listed as a member of the Pediatric Audiological Network, audiologists will have to agree to submit this form to the state coordinator's office within ten days of completing a diagnostic evaluation for babies. Because a copy of the form is also submitted to the State Coordinator, he will be able to identify any babies who have not received a diagnostic evaluation by the time they are two months old. Project staff will contact the audiologist to whom the baby was referred and the parents to assist in completing an audiological evaluation for that baby.

1.10.3 Establish a Tracking and Data Management System

The biggest problem with existing newborn hearing screening programs is that too many babies referred from the screening program are lost to follow-up before they receive audiological diagnosis and appropriate medical, educational, or therapeutic services. The system described above will assist in making sure this doesn't happen in Idaho hospitals, but other states have found that a computerized tracking and data management program is essential in tracking babies to make sure diagnostic evaluations and enrollment in appropriate early intervention programs are completed in a timely manner. The most successful systems currently used by other states are those that function similarly to the computer-based tracking systems used by all states for metabolic screening programs for newborns, but are specifically designed for the unique characteristics and timelines of an EHDI program.

As a part of this project, the HI*TRACK (Hearing Identification TRACKing) software developed by NCHAM and currently being used in statewide programs in Utah, Arizona, and Hawaii will be distributed to all hospitals with UNHS programs. HI*TRACK provides the capability for hospital staff to track each infant's status relative to hearing screening, diagnostic assessment, referral to follow-up services, and enrollment in intervention programs. The HI*TRACK system enables people at the hospital to quickly:

• customize the software through user-defined codes and definitions to reflect the specific audiologists, screeners, physicians, and hospitals which are contributing data to that particular database;
• collect basic demographic information for all newborns screened and link that information to data about diagnostic and referral status for infants who need assessment or follow-up services;
• produce program management tools such as tickler lists of infants who need further screening or diagnostic evaluation, and descriptive summaries of individual screener's performance;
• produce standard and customized letters that communicate the results of screening and diagnostic procedures to parents and/or physicians; and
• generate reports for any specified time period on the status of the early hearing detection and intervention program, including numbers and percentages of infants screened, missed, or lost during inpatient screening, referred for further audiological assessment, and found to have confirmed hearing lost.

Information from each hospital database will be electronically transferred at the beginning of each month to the State Coordinator, who will have a version of the software which aggregates the information from each hospital into a state database. This data will be used by the State Coordinator to assist with tracking and follow-up to ensure that all babies referred from the screening program receive timely and appropriate services. The state database will also be used to generate reports for quality assurance, technical assistance, and program management.

1.10.4 Year #1 Evaluation Activities

To be successful, ongoing formative evaluation activities should be thoroughly integrated with implementation activities. Therefore, the way in which evaluation activities will be used to guide the project is described briefly here, as well as more fully in Section 1.11. The project has contracted with NCHAM to do external evaluations for each year to monitor how well the project is achieving its objectives and to target and refine activities for subsequent years. Questionnaires, interviews, and onsite visits will be used to collect evaluation data from a representative sample of hospital staff, parents, and other stakeholders (e.g., physicians, audiologists, early intervention program personnel) regarding their perceptions of the EHDI program and suggestions for improvement.

Each year's evaluation will also have a particular focus that is designed to guide the implementation of activities related to the main thrust of the next year's activities. During year #1, this focus will be on how well hospitals are achieving goals related to screening coverage (>98% of births screened prior to discharge), referral rates (for single-stage screening programs < 4%; for two-stage screening programs, <10% at the first stage and <1% at the second stage), and percentage of babies needing it who are receiving audiological diagnosis and being enrolled in early intervention programs (>90%). Based on the experience of other states, it is expected that many hospitals will initially have difficulty in some or all of these areas. Data from the state HI*TRACK system in conjunction with information from onsite visits will be used to identify those hospitals who are having difficulty, as well as strategies which successful hospitals are using. This information will be used to adjust the activities implemented in Year # 2.

At the end of Year #1, we will examine how successful it has been for hospitals with a very small number of annual births to refer babies to the Regional Early Intervention Program for hearing screening. It is understandable that the 13 Idaho hospitals with less than 100 births per year are hesitant to purchase equipment and set up a newborn hearing screening program. The question to be addressed at the end of Year #1 is whether referring babies to the Regional Early Intervention Program is as effective as hospital-based screening in identifying babies with hearing loss and enrolling them in early intervention programs. If it is successful, the strategy will be continued in subsequent years. If it is not successful, alternatives will need to be developed.

1.10.5 Activities for Years #2 through #4

Table 1 summarizes briefly the activities to be implemented during Years #2 to #4 of the project. It is important to emphasize that the experiences of each year, feedback from the meetings of hospital coordinators, and evaluation data from the end of each year will be used to refine and focus this plan as the project evolves.

Table 1. Activities for Years 2-4.

1.10.6 Project Activities Time Allocation Table and Personnel Allocation Chart

The Project Activities Time Allocation and the Personnel Allocation Chart are included on pages 32 and 33.

1.11 Plan for Evaluation

The National Center for Hearing Assessment and Management (NCHAM) at Utah State University will conduct an external evaluation of the project each year. Based on information from the four components described below, this evaluation will specifically address each of the eight objectives listed in Section 1.8.

1.11.1 Analysis of Data from Hospital and State Database

All hospitals will be using the HI*TRACK data management and tracking program. Each hospital will submit data on their program to the Program Coordinator at the beginning of each month. NCHAM staff will work with the Program Coordinator and Data Analysis Specialist to regularly review these data to target technical assistance and training needs. In addition, quarterly reports will be provided for the Consortium meetings related to coverage, referral rates, timeliness and completeness of diagnostic evaluations, and enrollment in early intervention programs. Monthly reports will also be used by the Program

PROJECT ACTIVITIES TIME ALLOCATION TABLE

Project Title: Implementation of a Statewide Early Hearing Detection and Intervention Program in Utah

Project Director: Pennie Cooper

Budget Period: 4/1/00 to 3/31/01 State: Idaho

PROJECT ALLOCATION CHART

Project Title: Implementation of a Statewide Early Hearing Detection and Intervention Program in Utah

Project Director: Pennie Cooper

Budget Period: 4/1/00 to 3/31/01 State: Idaho

Objectives and Approaches	Staff by Title and Consultants in Persons Days
	Pennie Cooper	Curt Whitcomb	Carrie Mori	Data Analyst Specialist	NCHAM Staff
Expansion of UNHS to hospitals birthing 95% of babies in Idaho Manage incentive grant competition Regional workshops to expand and/or improve EHDI programs Monitoring and improvement of EHDI implementation operation Coordinate services of other agencies with EHDI	2 4 10 __	5 20 35 __	1 5 5 20	__ __ 10 __	__ 8 __ __
Establish system for Referral and Audiological Diagnosis Audiologist survey and creation of referral network Implement referral and tracking system Monitor success of system and adjust as necessary	2 __ 2	3 10 10	2 __ 3	__ __ __	__ 1 __
Establish a Tracking and Data Management System Install software in all hospitals and state office Provide training and technical assistance Monitor success of system and make adjustments as necessary	__ __ 2	2 10 5	__ __ __	3 10 40	__ __ __
End of Year Evaluation Activities Plan evaluation with outside contractor Conduct evaluation Review results and meet with Consortium for adjusting Year #2 activities	2 __ 2	3 2 5	1 __ 2	1 __ 1	4 16 2

Coordinator to identify and respond quickly to specific needs in individual hospitals.

1.11.2 Onsite Visits

Each year, NCHAM staff will conduct onsite visits to a random sample of four or more hospitals in Idaho to review the procedures they are using, identify difficulties they are having, assess the support they receive from the State Coordinator's office, and determine the degree to which the objectives of the project are being met by that hospital. A report of these onsite visits will be submitted at the end of each year to the Council.

1.11.3 Questionnaires and Interviews

At the end of the first year and again at the end of the project period, questionnaires and interviews will be used to collect information from parents, hospital screening staff, hospital administrators, physicians, and audiologists regarding the various objectives of the project that cannot be addressed from the HI*TRACK database. Questionnaires will be based on similar evaluations NCHAM staff have done for the Ohio Department of Health, Utah Department of Health, Hawaii Department of Health, and Rhode Island Department of Health over the past ten years. Data collection instruments will be designed to take a minimum amount of time from these stakeholders consistent with gathering the information needed.

1.11.4 Special Evaluation Focus for Each Year

The evaluation activities for each year will include a particular focus on a topic relevant to the refinement of the EHDI system as outlined earlier in Table 1. Although using the same activities and data collection strategies, this will require different instrumentation.