CHAPTER I PURPOSE OF THE PROJECT

1.1 Description of the problem

In March, 1988, the Ohio legislature enacted sections 3701.503 through 3701.507 of the Ohio Revised Code, thus mandating that all newborns in Ohio's hospital nurseries receive a hearing risk screening via a questionnaire developed by the Ohio Department of Health (ODH). The legislation made no provision for data collection and tracking. As a result, answering the critical question, "Is it working?" has proved extremely difficult. To address this, the Department contracted with the National Center on Hearing Assessment and Management (NCHAM), Utah State University, to evaluate Ohio's Infant Hearing Screening and Assessment Program (IHSAP) program. Results of this evaluation revealed that IHSAP was identifying fewer than one-third of the infants with congenital hearing loss.

1.2 Rationale and evidence for proposed intervention

Based on the results of this study, NCHAM made recommendations for improvements in three areas: 1) identifying more children with hearing loss, 2) communicating with parents, and 3) better tracking and reporting. In response to these recommendations, ODH sponsored a consensus conference in October, 1999, to consider universal newborn hearing screening. Invited participants recommended that Ohio's law be amended to require the screening of all newborns.

1.3 Identification of application type

Funding is being requested to assist with the planning and implementation of a statewide universal newborn hearing screening (UNHS) program. Specifically, the award is sought to allay the costs of developing a tracking/data collection system and the development of tools for training UNHS personnel.

1.4 Anticipated benefit

Ohio's current IHSAP program is identifying fewer than one-third of the infants with congenital hearing loss. ODH is currently planning to implement and sustain a UNHS program in order to increase the rate of identification to greater than ninety-five percent. Currently, reporting is sporadic, inexact, and costly, because the program is not supported by an electronic data collection and tracking system. There are many benefits to such a system: 1) to provide a comparison of the number of newborns screened with the number born in order to assure that as few infants as possible are missed; 2) to enable adequate tracking of infants who have been identified though the program, in order to assure that their families have the opportunity to avail themselves of appropriate follow-up services; 3) to determine whether an identified infant has a medical home and that their primary care physicians are informed about the infant's audiologic diagnosis and follow-up care; 4) to provide quality assurance and support for maintaining the program; 5) to enable early intervention programs and school systems to plan for the future by determining the number of children who will enter preschool and school needing supportive services; and 6) to allow for accurate reporting to the federal government, to facilitate planning on a national level.

A sound training program is essential to the success of UNHS. Employing well- trained personnel to perform hearing screening, communicate results to the family, and prepare reports is likely to lead to fewer false positive results, better follow-up on the parts of families, better data collection, and increased awareness on the part of the infant's primary care physician of the infant's hearing status.

CHAPTER II ORGANIZATIONAL EXPERIENCE AND CAPACITY?

2.1 Organizational experience and capability

2.1.1. ODH's role in State Title V Maternal and Child Health (MCH) Block Grant

ODH is the recipient of the Title V Maternal and Child Health (MCH) Block Grant in Ohio. These funds support several different programs: local Child and Family Health Services (CFHS) Programs (prenatal, family planning and child health services); seven types of specialist clinics in 53 of Ohio's 88 counties; program linking uninsured, low income patients with safety net dental programs, or a network of dentists who agree to either donate or significantly discount their fees; services for children with special health care needs (CSHCN); and others.

2.1.2 ODH's role in State Title V CSHCN programs

Children with Special Health Care Needs are served through the Bureau for Children with Medical Handicaps (BCMH) program, which pays for specialty and subspecialty services including medical/surgical services, diagnostic services, occupational and physical therapy, speech therapy, respiratory therapy, durable medical equipment, nutrition services, and care coordination for program participants. James Bryant, M.D., Chief of the BCMH, is the director of CHSCN in Ohio.

2.1.3 ODH's role in Individuals with Disabilities Education Act (IDEA), Part C programs

ODH is the recipient of Part C funds and the lead agency for Part C of IDEA for Ohio. Through grants to county agencies, this program provides certain services at no charge to families of infants and toddlers with disabilities or developmental delays in at least one of these five developmental domains: cognitive, physical (including sensory), communicative, social or emotional, or adaptive. These services include multidisciplinary evaluation and assessment, development and periodic update of an individualized family service plan, service coordination, assistance with transition from the part C program to a preschool or other program, and family support. As the lead agency, ODH is also responsible for child find and public awareness, follow-along, parent and provider education, and evaluation of the program. Debbie Wright, R.N., M.S., is the Chief of the Bureau of Early Intervention Services (BEIS). IHSAP is in the Child Find Section, supervised by Debbie Cheatham. Steve Gassman, supervisor of the Birth to Three Section, is the Acting Part C Coordinator for Ohio.

2.1.4 ODH'S experience with newborn hearing screening programs

ODH has been involved in newborn hearing screening since the late 1960s, when it awarded a grant to a speech and hearing center to train volunteers to screen all infants in a local hospital using a test that elicited a startle response. Prior to the implementation of IHSAP, the Department had awarded grants to several sites to conduct hearing screening on high-risk or all babies in hospital nurseries. ODH has implemented and currently administers the mandated IHSAP, through which all newborns in Ohio are screened for hearing loss prior to discharge by means of a hearing risk questionnaire developed by ODH, in consultation with the IHSAP subcommittee. Infants with indicators for hearing loss are provided audiologic screening in the hospital or referred to community sites for the testing.

2.2 Technical assistance and training experience

ODH has extensive experience in the provision of technical assistance and training in the area of newborn hearing screening. Prior to the implementation of IHSAP, the department conducted training sessions around the state for hospital administrators and hospital personnel working directly with the program. The training for hospital IHSAP personnel have continued over the past ten years. In addition, hospitals have been provided with technical assistance when they have requested it or when monitoring activities have shown the need for it.

ODH provides training and technical assistance in several other areas, as well. Examples of other areas for training include the grants process, hearing and vision screenings for preschool- and school-aged children, early intervention basics, home visiting, family leadership, and SKI*HI curricula for individuals who work with children who are deaf or blind or have multiple disabilities. Technical assistance is provided to projects funded by the department, such as the (CFHS) programs, county early intervention programs, and the habilitative services programs for infants and toddlers who are deaf or hard of hearing and their families. Technical assistance is also provided for compliance with the Ohio Revised Code, such as the school screening and newborn (metabolic, etc.) screening programs, and for issues that are a priority of ODH (e.g., preschool screening).

ODH funds regional perinatal education centers (RPECs), located in tertiary care centers, to provide technical assistance to local prenatal providers. These centers, which are administered through the Division of Family and Community Health Services (DFCHS), have provided support in setting up and carrying out training and technical assistance for IHSAP.

CHAPTER III?ADMINISTRATION AND ORGANIZATION

3.1 Administrative and organizational structure

Ohio's Governor Bob Taft, who took office in January, 1999, named J. Nick Baird, M.D. as the Director of Health effective June 1, 1999. Dr. Baird, former senior vice-president and chief medical officer of Columbus based Ohio Health, is an obstetrician-gynecologist and has extensive experience working within a large health care system.

At this time, the Ohio Department of Health is organized by function with most programs housed within three Divisions in the department. The majority of the Maternal and Child Health (MCH) funded programs and positions are under the supervision of Kathryn K. Peppe, R.N., M.S., Ohio Title V Director and Chief of the Division of Family and Community Health Services (DFCHS). The Division of Prevention, one of two other divisions within the ODH receives limited Title V MCH Block Grant funding for the Women's Health Program.

Ms. Peppe directs the work of seven bureaus: 1) Bureau of Early Intervention Services (BEIS); 2) Bureau for Children with Medical Handicaps (BCMH); 3) Bureau of Child & Family Health Services (BCFHS); 4) Bureau of Nutrition Services (BNS); 5) Bureau of Oral Health Services (BOHS); 6) Bureau of Community Health Services and Systems Development (BCHSSD); and 7) Bureau of Health Services Information and Operational Support (BHSIOS). The programs located within each bureau are listed on the chart on page 9.

3.2 Organizational charts

Charts showing the organizational structure within which the project will function are on pages 8, 9, and 10.

CHAPTER IV: AVAILABLE RESOURCES

4.1 Staff

Debbie Cheatham, manager for the Child Find Section in the Bureau of Early Intervention Services will serve as project director. She supervises the public health audiologists. She will spend one-fourth of her time on the project.

Two public health audiologists will spend 100% of their time on the project, providing monitoring, training, and technical assistance to hospitals providing risk screening to all babies and to hospitals implementing and maintaining UNHS programs. Karen (Kit) Buhrer is a public health audiologist currently on staff. Another position has been developed and will be posted soon.

One half-time data entry operator will continue to maintain the risk registry for the current risk-based program and will maintain the data in the new system to initiate follow-up letters, to link the data with other systems, and to generate reports.

These positions are funded via Part C, IDEA.

4.2 Data systems

ODH plans to implement a data system combining various data collected by hospitals on newborns. Data include birth certificate information, results of infant hearing risk screenings, results of hearing assessments, and information about risk of developing disabilities or developmental delays. (Hearing assessments, as defined by Ohio law for IHSAP, is essentially a hearing screening.) This combined newborn data (CND) system is expected to be operational in mid 2000.

Infants who have a disability or a developmental delay or a condition likely to result in a developmental delay are eligible for early intervention. Data about infants and toddlers served in early intervention are maintained in a data system called Early Track. Early Track is currently being revised and will include specific information about infants identified as deaf or hard of hearing and the services they and their families are receiving.

4.3 Equipment

Equipment needs for this project include screening equipment and computers for maintenance of data. More than half of the hospitals have already obtained screening equipment in order to provide hearing assessments for IHSAP. Hospitals currently have computers which they use to enter birth certificate data. These computers will be used to report hearing screening results through CND. ODH has a computer that is used for maintaining the risk registry for IHSAP. Local early intervention programs have computers for use with Early Track.

 4.4 Facilities

Several hospitals have implemented UNHS programs, and several others have expressed an interest in doing so. Additionally, participants in a consensus conference convened by ODH concurred that legislation establishing the current risk-based program should be amended to require hospitals to provide hearing screening of all newborns in its nurseries. Legislation intended to achieve that purpose has been introduced in the Ohio House of Representatives.

CHAPTER V:?IDENTIFICATION OF TARGET POPULATION AND SERVICE AVAILABILITY

5.1 Target population

This project is intended to provide hearing screening for all newborns in Ohio, to facilitate audiologic diagnostic testing for infants who do not pass the screening, and to assure the availability of appropriate early intervention services for infants identified as deaf or hard of hearing.

5.2 Special barriers related to newborn hearing screening

Many newborns in Ohio stay in the hospital for a period less than twenty-four hours. Hospital personnel have to accomplish a large number of activities while the infant is there. Some hospital personnel consider the addition of hearing screening to their already full schedule to be burdensome.

Current legislation requires that hospitals provide risk screening. Unless the law is amended, any hospitals implementing UNHS will also have to complete the risk questionnaires and perform all other functions of the current IHSAP in order to be in compliance with the law.

Section 4753 of the Ohio Revised Code, which provides for licensure of speech-language pathologists and audiologists, requires licensure as an audiology aide for any person who provides hearing screening, unless it is specifically in the person's scope of practice as defined in other sections of the code. Technicians and volunteers would have to have licensure as an aide in order to perform hearing screenings. Obtaining licenses can be time-consuming and costly.

5.3 Special barriers related to availability of appropriate early intervention services

In response to complaints about the lack of appropriate services for infants and toddlers who are deaf or hard of hearing, ODH established a grants program in 1994 for the provision of habilitative services for these infants and their families. Currently, ODH funds ten of these programs, covering forty-nine of its eighty-eight counties. Habilitative services includes assessment of communication function; home-based and center-based therapy processes, such as auditory training, communication training, or speech-language training; and appropriate referrals to outside sources, such as speech-language therapists, physicians, social workers. Family support, empowerment, education and advocacy, as well as opportunities for interactions with deaf adults, are also included in habilitative services.

A few other counties have programs funded by school districts. A large number of Ohio's counties, however, have no services specifically for infants and toddlers who are deaf or hard of hearing and their families. These children are often served in center-based programs that serve children with a multitude of disabilities or developmental delays. Often, they are unprepared to stimulate adequately language development in an infant or toddler who is deaf or hard of hearing.

5.4 Supports related to newborn hearing screening

Ohio has had a newborn hearing screening program in place for ten years. In its evaluation of IHSAP, NCHAM found that hospital personnel, including doctors, nurses, and administrators, are aware and supportive of the need to identify hearing loss as early as possible.

In addition, several organizations in Ohio have pledged support for UNHS; among them are the Ohio Academy of Audiology, the Ohio Chapter of the American Academy of Pediatrics, the Ohio Association for the Deaf, the Ohio Speech and Hearing Association, and the Ohio Chapter of Self Help for the Hard of Hearing.

5.5 Supports related to audiologic diagnostic testing

There are almost eight hundred audiologists licensed to practice in Ohio. At this time, there are approximately 150 facilities that provide hearing assessments and audiologic diagnostic evaluations for infants identified through IHSAP with indicators for hearing loss or in need of further testing. There are audiologic services available in most geographic regions of Ohio.

5.6 Supports related to provision of appropriate habilitative services

ODH has a contractual relationship with Bowling Green State University to coordinate, schedule, and arrange SKI*HI training throughout the state. Ohio has opportunities for infants and toddlers and their families to choose from several different communication methodologies. There are several auditory-verbal, oral, and total communication programs. The Ohio School for the Deaf and ODH recently co-sponsored a workshop about deaf mentor programs and are looking at ways to implement such a program in Ohio.

CHAPTER VI?NEEDS ASSESSMENT

6.1 Prior and proposed needs assessment activities

Ohio's current program, IHSAP, is risk-based. Several studies have shown that about half of the newborns who are deaf or hard of hearing do not have any risk indicators. In addition, results of the program evaluation of IHSAP conducted by NCHAM in 1997 and 1998, showed that many infants are lost to follow-up. As a result, according to NCHAM, over two-thirds of the infants in Ohio who are deaf or hard of hearing are not identified through IHSAP.

Few of Ohio's current data are stored electronically. Hard copies of questionnaires and hearing assessment report forms are sent to ODH. These are sorted into birth date order and the questionnaires and passed assessments are stored in filing cabinets. Only failed hearing assessments are entered into a data system. The lack of manageable data makes follow-up of infants, as well as evaluation of the program, difficult.

Recommendations made by NCHAM include identifying more infants, developing strategies to improve communication with families, and implementing better tracking systems. These recommendations were reinforced by the participants at the consensus conference in October, 1999.

CHAPTER VII: COLLABORATION AND COORDINATION

At this time, ODH uses two different advisory groups addressing newborn hearing screening. A permanent subcommittee of BCMH's Medical Advisory Committee advises the department about the current IHSAP program, and a stakeholder group advises the department about UNHS. The second group comprises the participants of the consensus conference and others identified at the conference. Rosters of these groups are included in appendix A.

CHAPTER VIII: GOALS AND OBJECTIVES

8.1. Goal I: Infants with congenital hearing loss will be identified as early in life as possible.

8.1.1 Objective IA

By March, 2004, 95% of newborns in hospital nurseries will receive a hearing screening prior to hospital discharge

8.1.1.1 Activity 1 for Objective IA

Ohio will continue with risk based program while planning and beginning implementation of UNHS

8.1.1.2 Activity 2 for Objective IA

ODH will develop, with direction from the UNHS stakeholder group, protocols for newborn hearing screening, including informed consent; documenting results; and making referrals

8.1.1.3 Activity 3 for Objective IA

ODH will provide training and technical assistance to hospitals implementing UNHS program, emphasizing the fifteen tertiary care nurseries by March, 2001; the thirty-four level II nurseries by March, 2002; and the seventy-four level I nurseries by March, 2003

8.1.1.4 Activity 4 for Objective IA

ODH will develop and implement guidelines and procedures for referring infants born at home or in birthing centers for hearing screening by one month of age by March 2004

8.1.2 Objective IB

Professionals and the public will be more knowledgeable about the need for early hearing screening, audiologic diagnosis, and early intervention

8.1.2.1 Activity 1 for Objective 1B

ODH will invite the presidents of professional organizations to participate in or send a representative to stakeholder group meetings

8.1.2.2 Activity 2 for Objective IB

ODH staff and stakeholders will make presentations about the importance of early identification and early intervention to professional organizations

8.1.2.3 Activity 3 for Objective IB

ODH and stakeholders will prepare articles for professional journals and newsletters

8.1.2.4 Activity 4 for Objective IB

ODH will provide information, including brochures, to hospitals, child health clinics, early intervention programs, WIC, Welcome Home (home visiting program for teen and first-time mothers), and other programs that provide services for infants and toddlers

8.1.2.5 Activity 5 for Objective IB

ODH will identify and/or develop public service announcements to be aired during May (Better Speech and Hearing Month)

8.1.2.6 Activity 6 for Objective IB

ODH will place information about early identification and intervention for infants and toddlers who are deaf or hard of hearing on the ODH web page

8.1.3 Objective IC

99% of infants who do not pass the hearing screening will receive audiologic diagnostic testing, initiated no later than three months of age.

8.1.3.1 Activity 1 for Objective IC

ODH will compile a list of facilities where pediatric audiologic diagnostic testing is available, restricted to those facilities that agree to send reports to ODH, the child's medical home, and the early intervention program in the area where the infant lives.

8.1.3.2 Activity 2 for Objective IC

ODH will develop protocols for hospitals to use in referring infants for, or scheduling, audiologic diagnostic evaluations.

8.2 Goal II: ?Infants will be tracked from the time of their first screening until hearing loss is ruled out or until the child leaves the early intervention system

8.2.1 Objective IIA

ODH will develop a data system to link its hospital data collection system (CND), to be operational in mid-2000) and its early intervention data tracking system

8.2.1.1 Activity 1 for Objective IIA

ODH will contract with a systems analyst to examine the new CND and revised Early Track and determine what a data system would need to comprise in order to provide a link between the two, generate letters for follow-up, track infants who have not passed the hearing screening through audiologic diagnostic testing into the early intervention system, and generate reports; to review newborn hearing screening systems available commercially to determine whether any is capable of providing the link; and make recommendations to the department about purchasing an existing system or developing its own.

8.2.1.2 Activity 2 for Objective IIA

ODH will determine, using the recommendations of the systems analyst, how to proceed in terms of purchase or development of a data tracking system. Procurement of the system will take part in the second year.

8.3?Goal III: Infants and toddlers who are congenitally deaf or hard of hearing and their families will have the opportunity to receive appropriate services by the time the infant is six months of age.

8.3.1 Objective IIIA

ODH will expand the habilitative services projects to cover all 88 of its counties. The expansion will be completed by the end of the fourth year of the project.

8.3.1.1 Activity 1 for Objective IIIA

ODH will convene a subgroup of the stakeholder group to advise the Department about appropriate services for infants and toddlers who are deaf or hard of hearing and their families.

8.3.1.2 Activity 2 for Objective 3A?

ODH will issue competitive requests for proposals in areas not currently served by funded habilitative services programs in years 2, 3, and 4.

8.3.1.3 Activity 3 for Objective IIIA

ODH will procure or prepare, and disseminate to facilities where pediatric audiologic diagnostic testing is available, literature about deafness and reduced hearing acuity, communication methodologies, resources available to families, and related issues.

8.3.1.4 Activity 4 for Objective IIIA

ODH will provide the literature described in the paragraph above to facilities that provide audiologic diagnostic testing and will provide training and technical assistance about counseling families of infants who have been diagnosed as deaf or hard of hearing.

8.3.1.5 Activity 5 for Objective IIIA

ODH will monitor facilities providing audiologic diagnostic testing to ensure referral of families of infants diagnosed as deaf or hard of hearing to the early intervention program in the county or region where the infant lives.

8.3.2 Objective IIIB

Families will be offered family support and opportunities to interact with members of the deaf community.

8.3.2.1 Activity 1 for Objective IIIB

ODH will require habilitative services projects, funded by the Department, to collaborate with early intervention programs to assure that parents have the opportunity to receive all early intervention services, including family support, to which they are entitled.

8.3.2.2 Activity 2 for Objective IIIB

ODH will continue to work with the Ohio School for the Deaf on establishing a deaf mentor program for families of infants and toddlers who are deaf or hard of hearing.

8.3.2.3 Activity 3 for Objective IIIB

ODH will require habilitative services projects, funded by grants from the Department, to make available to each family enrolled in its programs a schedule of events in which activities of the deaf community are likely to participate and/or will set up programs which bring families together with individuals who are deaf or hard of hearing.

CHAPTER IX: REQUIRED RESOURCES

9.1 Required resources for Goal I: Infants with congenital hearing loss will be identified as early in life as possible.

9.1.1 Required resources for implementation of universal newborn hearing screening

In order to implement UNHS statewide, much planning is necessary. The stakeholder group, which was convened for a consensus conference in October, 1999, will continue to meet to provide direction to the department related to UNHS. Funding is requested for four meetings of this group each year.

Protocols, consent forms, reporting forms, and referral forms need to be developed, printed, and disseminated. The cost for these activities will be borne by ODH.

Equipment will be needed for conducting hearing screenings. These costs will be borne by the hospitals.

Training will need to take place for screening personnel in such areas as maintaining equipment, preparing infants for and conducting hearing screenings, communicating results to families, reporting results, and referring families for follow-up services. Funding is requested for the development of a training tool and for some travel costs related to training. Additional costs will be borne by ODH.

9.1.2 Required resources for professional and public awareness activities

DH staff and members of the stakeholder group will be available to make presentations about the importance of early identification and intervention and to prepare articles for newsletters and journals.

ODH has a media center that can be used in developing public service announcements and disseminating them to radio and television stations across the state. The cost of these activities will be borne by ODH.

Printed information will be prepared for dissemination by facilities that serve families with infants and toddlers. Costs of this information will be borne by the Department.

9.1.3 Required resources for assuring that infants not passing a hearing screening receive audiologic diagnostic testing

ODH staff will identify facilities to provide pediatric audiologic diagnostic testing and will work with the stakeholder group to develop protocols for hospitals to use in referring infants for, or scheduling, diagnostic testing.

9.2 Required resources for Goal II: Infants will be tracked from the time of their first screening until hearing loss is ruled out or until the child leaves the early intervention system

ODH has developed two databases, one of which will be used for collecting data related to newborns, the other for tracking infants and toddlers who are enrolled in early intervention programs. There is, however, no system tracking infants from the time they leave the hospital until they are enrolled in early intervention. In order to provide a link between the two databases, the existing systems must be investigated to determine what is needed to make compatible a program linking them. Commercially available software can then be examined to determine whether any is compatible. Finally, ODH must decide whether to purchase or lease commercially available equipment or to develop its own.

Funding is requested for investigating the current systems, determining the feasibility of using a commercially available program, purchasing, leasing, or developing a tracking system to link CND and Early track (year 2), maintaining the system (year 3), and providing training and technical assistance about the system (years 2 and 3).

9.3 Required resources for Goal III:?Infants and toddlers who are congenitally deaf or hard of hearing and their families will have the opportunity to receive appropriate services by the time the infant is six months of age.

Currently, habilitative services projects serve infants and toddlers who are deaf or hard of hearing and their families in about 55% of Ohio's counties. Most of the remaining counties have no services specifically for these infants and toddlers. They are frequently served, therefore, in programs that do not have the resources to meet their unique needs. In order to assure availability of appropriate services for infants and toddlers who are deaf or hard of hearing, ODH needs to expand these programs to cover the entire state. Funding is requested to allay the start-up costs for this expansion.

CHAPTER X: PROJECT METHODOLOGY

10.1 Overall model for addressing goals and objective and coordinating activities

Two public health audiologists, with the guidance of the project director, will have the primary responsibility for carrying out and coordinating the activities that pertain to the project's goals and objectives.

10.1.1 Stakeholder group

The UNHS stakeholder group will continue to advise ODH about planning, implementation, and evaluation activities throughout the project period. The group will meet at least quarterly, and ad hoc task forces will meet as necessary. One such task force, for example, will meet early in 2000 to address reimbursement issues. All aspects of the program will be discussed with the stakeholder group. The public health audiologists will provide staff support for the stakeholder group and its task forces and will assure that its recommendations are considered in every step of the planning, implementation, and evaluation process.

10.1.2 Continuation of IHSAP program

The public health audiologist will continue to provide hospitals with training and technical assistance related to the currently mandated risk-based IHSAP. In order to ensure that infants who have indicators for hearing loss continue to be screened, all aspects of the current program will remain in place until UNHS programs are implemented.

10.1.3 Development of data system to link CND and Early Track

The project director and the public health audiologists will provide information and assistance to the systems analyst to assure that the data system that is acquired meets the needs of the program.

10.1.4 Development of an distance, interactive training tool

The project director and the public health audiologists will provide information and assistance to the education specialist to assure that the training tool that is developed meets the needs of the program.

10.1.5 Implementation of universal newborn hearing screening in hospitals and other birthing facilities

The manner in which this is carried out will depend, to some degree, on whether and when legislation is passed mandating UNHS. Legislation was introduced into the Ohio House of Representatives (House Bill 4880) in October, 1999, and has been assigned to the Health, Retirement, and Aging Committee. At this point, it has had sponsor testimony. If UNHS is mandated, hospitals will comply. The project director and the public health audiologists will continue to monitor the bill and to keep the stakeholder group apprised of its progress.

Several hospitals have already implemented UNHS or plan to during calendar year 2000. Until such time as UNHS is mandated, however, some hospitals will need to be persuaded to implement it. Public health audiologists will meet with hospital personnel to present information about the importance of early intervention and identification, experiences of hospitals which have implemented it, screening equipment and methodology, cost, personnel, and related issues. Priority for the first year will be hospitals that have tertiary care nurseries; the second year, hospitals with level II nurseries; the third year, hospitals with well-baby nurseries; and the fourth year, with fee-standing birthing centers and midwives assisting with home births.

With direction from the stakeholder group, ODH will determine guidelines for conducting the screening. After the stakeholder group makes its recommendations, the public health audiologists, with guidance from the project director, will prepare written guidelines and present them to the stakeholder for review and comment. When the guidelines have been prepared, ODH will disseminate them to hospitals and provide for training about them.

Public health audiologists will coordinate training for, and provide technical assistance to, hospital personnel as they prepare for and implement UNHS programs in their facilities.

10.1.6 Professional and public awareness

The public health audiologists, with guidance from the project director, will work with stakeholders, the ODH media center, and others to implement professional and public awareness activities.

10.1.7 Assurance of audiologic screening

The public health audiologists will send information about the UNHS program to all audiologists licensed to practice in Ohio, along with a request for provider information and an agreement to follow ODH guidelines for reporting and referral. Audiologists will be asked to return the provider information and the agreement to follow guidelines only if they are interested in being on the list of facilities where pediatric diagnostic testing is available. ODH will disseminate this list to hospitals and any other facilities involved in the newborn hearing screening process.

With direction from the stakeholder group, ODH will determine protocols for referring or scheduling infants for audiologic diagnostic testing. After the stakeholder group makes its recommendations, the public health audiologists, with guidance from the project director, will prepare written protocols and present them to the stakeholder for review and comment. Once the protocols are adopted, ODH will disseminate them to hospitals and provide for training about them.

10.1.8 Assurance of opportunities for families of infants and toddlers who are deaf or hard of hearing to receive appropriate services

ODH will convene an ad hoc task force of the stakeholder group to advise the department about appropriate services. The task force will comprise representatives from families, teachers of the deaf, audiologists, physicians, the Ohio Department of Education, the Ohio School for the Deaf, and others who are interested. This task force will review the guidelines for the current habilitative services projects and make recommendations for revisions; advise the department about literature that will be distributed to facilities where pediatric audiologic testing is performed; and assist in the review of applications for funding of habilitative services.

The public health audiologists will monitor the facilities where pediatric audiologic testing is done to assure that parents are receiving the literature developed by the department, as well as referrals into their local early intervention program. They will also monitor the early intervention programs and habilitative services projects to assure that families are receiving appropriate services, including family support and opportunities for interaction with members of the deaf community. Data from the data system developed to link CND and Early Track, as well as Early Track, will provide information for these monitoring purposes.

10.2 Involvement of State Title V CSHCN programs and families in the project planning, implementation, and evaluation activities

The advisory group for IHSAP is a subcommittee of the Medical Advisory Committee of BCMH. The chief of that bureau, James Bryant, M.D., is the director for CSPCN in Ohio. Dr. Bryant served as pediatrician on the IHSAP subcommittee, as well as a stakeholder group advising ODH about the evaluation of IHSAP, prior to taking the position with ODH. He has continued to serve actively on that committee, sending a representative to meetings when he cannot attend. He has attended the stakeholder group meetings and is taking a leadership role in the task force looking at reimbursement issues. BCMH will continue to have active representation throughout the planning, implementation, and evaluation of UNHS.

Families have participated actively in the planning, implementation, and evaluation of IHSAP. Two mothers, one of whom is deaf, serve on the IHSAP subcommittee. The stakeholder group for evaluation included one mother and two fathers, one of whom is deaf. There are three parents on the UNHS stakeholder group. Parents have participated in reviews of competitive applications for habilitative services program funds, development of training material, presentations at professional meetings, task forces looking at data fields for CND, and other activities. A parent from the UNHS stakeholder group serves on the task force on reimbursement. ODH will continue to involve families in these ways as UNHS for infants born in Ohio is planned, implemented, and evaluated.

CHAPTER XI PLAN FOR EVALUATION

11.1 Evaluation of the impact of the project

The overall goal of the project is the identification of infants who are deaf or hard of hearing and their enrolment in appropriate services by the age of six months. Evaluation activities to determine to what extent this goal is being realized will start in the third year of the project. The stakeholder group will advise ODH about the evaluation.

11.1.1 Early identification of infants who are deaf or hard of hearing

CND will provide ODH with data regarding which infants have received a newborn hearing screening and the results of that screening. The same tool will be used by vital statistics, allowing for a comparison of the number of infants screened with the numbers of infants born in Ohio.

The data system to be developed will include information about infants referred for follow-up audiologic diagnostic testing. Results of this testing will be reported to ODH, where it will be entered into the database. A comparison of the number of infants diagnosed as deaf or hard of hearing with the number of infants born in Ohio will show the percentage of infants who are deaf or hard of hearing. Comparison of this percentage with published norms will demonstrate the extent to which the goal of identifying infants who are deaf or hard of hearing is being achieved.

11.1.2 Enrollment in appropriate services by the age of six months

The data system that will be developed to link CND and Early Track will inform local early intervention programs of infants who have been diagnosed as deaf or hard of hearing. Data obtained from Early Track will inform ODH about the services that infants enrolled in early intervention programs are receiving. In those areas where habilitative services projects are in place, early intervention programs are expected to refer to them all families of infants who are deaf or hard of hearing. A comparison of these data will show the percentage of the infants diagnosed as deaf or hard of hearing and referred to early intervention with those who are receiving services, including habilitative services for infants and toddlers who are deaf or hard of hearing and their families. Birth date information is also included in these data bases, so that the age of diagnosis and enrollment in early intervention services can be determined using these data.

Habilitative services projects will be monitored to assure that services are appropriate. Final reports will be required and will include information about each infant's birth date, date of referral to the program, and date of amplification, as well as the program's activities related to family support and opportunities for interaction with members of the deaf community.

Surveys will be used to measure the satisfaction of families with the process of identification and referral and with the early intervention programs they are receiving. The data system linking CND and Early Track will be used to select a random group of infants who have been diagnosed as deaf or hard of hearing. Surveys will be developed with assistance from DFCHS research and evaluation staff and with the advice of the stakeholder group. These surveys will be mailed to the families of selected infants; a second mailing will be sent to those not responding. Results will be analyzed with assistance from DFCHS research and evaluation staff.

Another survey will also be done to measure families' satisfaction with the habilitative services program. The survey will be prepared by ODH, with assistance from DFCHS research and evaluation staff and with the advice of the stakeholder group. The individuals working with the families will distribute the surveys, along with an stamped envelope addressed to BEIS. The surveys will be returned directly to ODH, and analyzed with assistance from DFCHS research and evaluation staff.

A report will be prepared using the data obtained from these various activities and presented to funding sources, the UNHS stakeholder group, and other interested parties. Results will be used to plan for improvements and implement changes in the program.

11.2 Plan to monitor and evaluate the efficiency and effectiveness of the proposed program

11.2.1 Implementation of universal newborn hearing screening in hospitals and other birthing facilities

Protocols developed by ODH for newborn hearing screening, documenting results, and making referrals will be piloted during the first year by hospitals that have voluntarily implemented UNHS programs. Following a two- to four-month period, surveys will be sent to the participating hospitals, soliciting comments about the protocols. Results of the survey will influence modifications in the protocols. Revised protocols will be piloted for another two- to four-month period. A second survey will be sent and the protocols will again be modified.

At the end of each year, the hospitals providing newborn hearing screenings for at least 95% of the infants in their nurseries will be reviewed. ODH will look at the number of newborns who have been in the hospitals' nurseries and the level of care of the hospitals' nurseries. Pass/fail results of the hearing screenings in each facility will be reviewed to determine the effectiveness and efficiency of the screening protocol in general, as well as the performance of the specific hospital.

Using data from the system developed to link CND and Early Start, ODH will review the age of infants at the time audiologic diagnostic testing is initiated, as well as the time the diagnosis of deafness or reduced hearing acuity is made. Results of this analysis will be used in assessing the effectiveness of the protocols for referrals for audiologic diagnostic testing.

11.2.2 Training tool

During its development, the training tool will be piloted in at least ten hospitals. First, a post-test will be given at the end of the session and answers will be analyzed to determine whether there are areas of the training that need to be expanded or made clearer. In addition, participants will be asked to fill out an evaluation of the tool in terms of its effectiveness, appropriateness, and level of interest.

11.2.3 Tracking of infants from their first hearing screening

ODH will select a sample of infants reported via CND as not passing a hearing screening to determine, using the system linking databases and Early Track, whether information was received about auditory diagnostic testing, referral to early intervention (when appropriate), and enrollment in habilitative services (when appropriate).

11.2.4 Enrollment in appropriate services by six months of age

Early Track data and final reports from habilitative services programs will be reviewed to determine the age at which infants were referred into habilitative services.