Centers for Disease Control & Prevention EHDI Grants (2000):
Arkansas

GRANT ABSTRACT
• Grant Narrative

GRANT NARRATIVE

A. Understanding the Problem

Roles

Identification and remediation of hearing loss in newborns/infants have become increasingly recognized as public health issues in the last few years, as evidenced by Healthy People 2000 (1990), the Joint Committee on Infant Hearing Position Statement (1994), and the American Academy of Pediatrics Policy Statement (1999). Automation of technology, specifically auditory brainstem response and otoacoustic emission testing, allow non-audiology personnel to carry out in-hospital hearing screening on neonates. As important as this development is, screening is only the first step in providing services to individuals with hearing loss and their families. Without subsequent audiologic evaluation and enrollment in family-centered, culturally appropriate intervention, the screening portion represents energy and money expended with little gain. Assisting states and/or regional entities in developing and implementing effective systems to screen, identify, and serve children with hearing loss is the CDC's and the states' primary purpose in this cooperative agreement.

As a partner in this agreement, state entities must engage in activities that result in screening, identifying, and providing services to the neonatal/infant population with hearing loss. Those activities include, but may not be limited to: establishing a surveillance and tracking system with standardized data collection (followed by analysis) from any necessary source on all children, including those with late onset or progressive hearing loss; obtain and act on outcome measures; keep the public involved in the process through surveys, etc.; collaborate with other entities in the state to build an Early Hearing Detection and Intervention (EHDI) infrastructure; meld with other state screening programs that identify children with special health care needs; disseminate information about the program in Arkansas; and develop an evaluation plan for the system.

Current Arkansas Program

The Infant Hearing Program (IHP) has been in existence since 1982. On staff are 2.5 audiologists, one who serves as coordinator of the IHP, with 1.5 audiologists in the field, as well as two support staff positions in the Little Rock central office. In the beginning the program focused on early detection of hearing loss, but was limited to only six hospitals, four in the Little Rock area and two in northwest Arkansas. Trained volunteers, under an audiologist's supervision, were conducting testing and providing limited follow-up. The program was strengthened by Act 1063 of 1993 which mandated a high-risk "paper screen" for every birth in the state (see Appendix A). The paper screen and accompanying high-risk registry database have been operational since 1995. Act 1559 of 1999 established a Universal Newborn Hearing Screening law (UNHS) and is a good first step toward expanding the current program into an EHDI system (see Appendix B). The UNHS legislation established an Advisory Board and mandates that each facility with more than 50 births annually will provide or arrange for bilateral physiologic hearing screening. Full implementation will bring the percentage of Arkansas' births covered under the UNHS law to approximately 98%. The Advisory Board is composed of three audiologists, one speech-language pathologist, one otolaryngologist, one parent of a child with hearing loss, and one consumer representing the deaf/hard-of-hearing communities. The present chair of the Advisory Board is Patti Martin, M.S., CCC-A, and Director of Speech Pathology and Audiology at Arkansas Children's Hospital for more than 12 years. Arkansas Children's Hospital began its universal newborn hearing screening program in the early 1980s. Consequently, Ms. Martin and Children's are recognized leaders in pediatric audiology and both are valued resources for the Arkansas EHDI program. The Advisory Board can establish sub-committees as needed (e.g., Diagnosis and Amplification; Early Intervention) to help design, implement, and participate in an Arkansas EHDI program. The Advisory Board has drafted the rules and regulations needed to implement Act 1559, and it is anticipated that those rules and regulations will take effect in September 2000.

Of the current 57 birthing facilities in Arkansas, 28 have implemented universal newborn hearing screening. The remainder are expected to have screening programs when the rules and regulations go into effect (~9/00). While the 28 hospitals with universal screening represent approximately 72% of Arkansas' annual births, they are not uniformly executing those programs. The (provisional) number of infants born in Arkansas during calendar year 1999 was 35,189, with 20,123 (57.2%) receiving an initial physiologic hearing screen before hospital discharge or shortly thereafter. [Note: infants with risk factors and all those born in "universal" hospitals are entered in the database.] Appendix C indicates this is a substantial increase in the number of children screened as well as the number entered into the database (1996-1999). Of the 20,123 screened, 1781 (8.9%) failed the initial screen, and 591 of those (33.2%) received a follow-up screen. The number of children referred from the initial screen has remained steady, resulting in a sizable decrease in the percentage of children referred. Unfortunately, the number of children returning for a follow-up screen has also remained steady, suggesting that early identification and intervention still may not be taking place for a considerable number of children. With the planned media campaign and other measures, we expect that the number of children receiving follow-up audiologic services will increase. The total number of children identified and referred for intervention during 1996-1999 cannot be provided due to the lack of infrastructure and communication among agencies within Arkansas.

Hospitals may establish their own hearing screening protocol with help provided from the IHP as needed. The rules and regulations for Act 1559 will provide guidelines for hospitals and ensure a measure of consistency among facilities. Hospitals may use either auditory brainstem response (ABR) or otoacoustic emissions (OAE) technologies. Of the 28 hospitals with programs in place, 19 use automated ABR, seven use distortion product OAE and two use transient OAE. There are a limited number of hospitals which offer out-patient rescreens for children who are referred based on the initial screen. Most, however, give families a "Hear for Our Children" brochure and a "provider list" (audiologists who test neonates) supplied by the IHP (Appendix D). Parents are encouraged to pursue follow-up on their own with one of the 20 audiology facilities identified on the provider list. Parents are given the opportunity to refuse the hearing screening on the At-Risk Screening Questionnaire for Infant Hearing Loss (Appendix E).

The current data compilation process is cumbersome, time and labor intensive, and inadequate for implementation of the Act 1559 rules and regulations. Information written on the At-Risk Questionnaire (Appendix E) is entered manually by IHP staff into the high-risk registry database. While the Arkansas Department of Health has plans to transfer all databases to a personal computer network environment, data is currently maintained on a non-network mainframe computer, which hampers linkages between databases. Reports¹ are generated monthly based on information entered into the database during the previous month. Screening results from audiologists performing either initial or follow-up screens are also entered into the database. Primary care physicians are notified about patients with high-risk factors for hearing loss and those who are referred based on the initial screen. Steps are underway to increase the role of ADH in the surveillance of infants needing further screening and/or diagnostic evaluation.

Need for EHDI in Arkansas

Expanding the current hearing screening program to include systematic follow-up and intervention in Arkansas is essential. As of May 2000, the number of infants/children with hearing loss served in the 0-5 population by the Arkansas School for the Deaf--Early Intervention² program at is 144. Children with confirmed hearing loss may be referred to one of several agencies (e.g., Arkansas IDEA Part C, called "First Connections"; Arkansas School for the Deaf--Early Intervention, or families may seek help individually). Aside from the federally-mandated referral to First Connections, there is little to no official communication process among these entities or between these entities and the IHP to track which children are receiving certain services. It is not possible, therefore, to obtain a count of children with hearing loss served by IDEA Part C, or to cross-reference names with other agencies; consequently, this figure of 144 must represent an undercount of the young children with hearing loss in Arkansas receiving services. The IHP is seriously handicapped in helping ensure that children with hearing loss are being identified and are receiving appropriate intervention services. Instituting an EHDI program will encourage the implementation of a statewide system that is responsive to the needs of Arkansas families.

Challenges for EHDI in Arkansas

There are several challenges associated with developing and implementing an EHDI tracking and surveillance program in the state of Arkansas. The IHP is currently not routinely informed of confirmed hearing losses in children, which precludes program assessment in terms of sensitivity and specificity. As mentioned, little formal communication has been established among the various agencies and programs servicing the young population with hearing loss. As a beginning point, a parent's signature on the At-Risk Questionnaire (Appendix E) allows the IHP to share information with the child's primary care physician and "other appropriate providers of services for your child". An existing interagency agreement among the Departments of Health, Education, and Human Services (Appendix F) can serve as the basis for further dialogue and action. However, an overriding concern for maintaining confidentiality has been a significant barrier to expanding the program. Confidentiality must remain a priority, yet ensuring interagency communication is vital for the success of EHDI in Arkansas.

As in many regions of the country, Arkansas is experiencing a rapid increase in the number of Latino persons throughout much of the state. Progress has been made in providing interpreters, for example, at local health units and hospitals, but providing intervention to children with hearing loss and their families in this population is not well documented. At the very least, printed information about hearing in children designed for consumption by the Latino community is a priority task that will be met through the EHDI program in Arkansas.

One barrier which must be acknowledged is a paucity of audiological services in some regions of the state, particularly the southeast or "Delta" area. There are few Arkansas-licensed audiologists in a several-county region (see state map in Appendix G). However, there are Memphis-based audiologists who contract part-time with otolaryngologists in the Delta. Even with those resources, persons who live in the southeastern-most counties of the state must travel approximately one hour each way to reach an audiologist, which can create a hardship on families needing audiologic care.

A final consideration is that the ADH is undergoing a restructuring which began May 1, 2000 and will continue for approximately 16 months. Although this reorganization is exciting for several reasons, such change is also complicated because the final configuration of the department will be data-driven and is undetermined at the moment (interim organizational charts in Appendix H). The restructuring process should not hamper or prevent ADH from carrying out the goals and objectives contained in this proposal.

B. Goals and Objectives

The long-term goal of the Arkansas Early Hearing Detection and Intervention Project is based on that of the Healthy People 2010 document; specifically, to design and implement a sustainable system to screen newborns for hearing loss by age one month, identify those with hearing loss by age three months, and enroll them in family-centered, culturally appropriate intervention services by age six months. Specific goals for the Arkansas program are divided into the areas delineated in the American Academy of Pediatrics Position Statement (1999) and are: 1) screening--increase the number of children receiving accurate hearing screening at birth; 2) tracking and follow-up--increase the number of children receiving follow-up audiologic services; 3) identification and intervention--create an adequate infrastructure among state agencies to supply a seamless, family-friendly system from screening to diagnosis to intervention; and 4) education--increase the public's understanding of the importance of hearing in early childhood. To accomplish these goals, action in several areas must occur simultaneously, as outlined in the objectives below (also divided into the areas of screening; tracking and follow-up; identification and intervention; and education). The person responsible for each objective and baseline measures (when available) are also included.

1. Screening

1.1 By August 2001 (Year 1) 95% of infants born in Arkansas birth facilities will receive an in-hospital, before discharge hearing screen (project director; 1999 Arkansas baseline, 57.2%).

1.2 By November 2001 (Year 2) hospitals will have a referral rate of no more than 10%, with a <5% target rate (project director; 1999 Arkansas mean = 8.9%, range = 0.5% - 33%).

1.3 By February 2003 (Year 3) hospitals will have a false positive screening rate of <3% and a false negative rate of 0% (project director; percentages taken from the 1999 American Academy of Pediatrics Policy Statement).

2. Tracking and Follow-Up

2.1 By February 2001 (Year 1) implement quality assurance measures and database management to facilitate tracking and follow-up efforts (project director, Director of Child and Adolescent Health).

2.2 By August 2001 (Year 1) design a system for sharing information among state agencies regarding hearing loss in the 0-3 population (e.g., Department of Health, First Connections, Arkansas School for the Deaf--Early Intervention) and service providers (e.g., Easter Seals) (project director).

2.3 By August 2001 (Year 1; final implementation may be Year 2) provide birth hospitals electronic data submission capability to the Infant Hearing Program (project director).

2.4 By June 2003 (Year 3) electronically link the Infant Hearing Program with Arkansas Vital Records Birth Certificates, Genetics Screening, Infant Mortality, and School Vision and Hearing Screening Programs (project analyst).

2.5 By August 2003 (Year 4) 80% of children referred on the initial screen will receive hearing re-screen by one month of age (project director; 1999 Arkansas baseline, 33.2%).

3. Identification and Intervention

2.1 By August 2001 (Year 1) establish diagnostic and amplification guidelines for practice for audiologists testing and fitting infants and young children (project director).

2.2 By May 2002 (Year 2) 95% of children in the 0-3 year population with confirmed hearing loss will be reported to the Arkansas Department of Health Infant Hearing Program (project director; 1999 Arkansas baseline two children or 0%)

2.3 By May 2004 (Year 4) partner with the ADH Healthy Hometown Improvement Project to identify and address audiology needs in communities, counties, and health regions of the state (project director).

2.4 By January 2004 (Year 5) 80% of children referred on a second hearing screen will receive audiologic evaluation by three months of age (project director; 1999 Arkansas baseline not available).

2.5 By November 2004 (Year 5) obtain intervention information on 90% of children in the 0-3 population with hearing loss (project director).

4. Education

3.1 By August 2001 (Year 1) establish guidelines for practice for hospital personnel to counsel families about hearing screening, hearing loss, and services available for those with hearing loss (project director).

3.2 By August 2001 (Year 1) increase public visibility and accessibility of the Infant Hearing Program with current Arkansas Department of Health resources; (project analyst).

3.3 By August 2001 (Years 1-5) initiate a statewide awareness campaign emphasizing the importance of hearing screening, identification, and intervention (project director).

3.4 By December 2002 (Year 2) conduct a two-day collaborative training session for audiologists on neonatal/infant diagnostic audiology and early intervention requirements in Arkansas) (project analyst).

Given the nature of the Arkansas EHDI Project, with every birth at each birth facility being followed, the inclusion of women and all ethnic and racial groups is assured. Representation of various ethnicities on the proposed professional committees, etc. may be limited by small numbers of individuals in those positions in Arkansas. However, every effort will be made to ensure that a representative sample, particularly with regard to family/parent participation, is achieved.

C. Program and Methodology

Coordinating Arkansas' EHDI efforts with other entities, particularly with contiguous states, is anticipated; however, the focus in the first year of the project will be on building the EHDI system within the state. Arkansas has approximately 33,000-36,000 births annually. Of the (provisional) 35,189 births in Arkansas during 1999, 22,670 (64.4%) were entered into the at-risk hearing loss registry. Once the universal hearing screening regulations take effect, that number is expected to increase to about 98% of the total number of births.

The Arkansas Department of Health is in the final stage of phasing out direct service provision for audiology. Therefore, two audiologists (one part-time) located in the west and east regions of the state, are available for surveillance/follow-up, providing inservices for hospitals or other organizations, and exhibiting at professional meetings. As the EHDI system is put into place, other needs that must be addressed include redesign and implementation of quality assurance measures, development and implementation of a project evaluation plan, and database management. To accomplish these a Management Project Analyst II (MPA) position is being requested. The MPA will consult with the available medical economist, epidemiologist, and project director on the design of the project evaluation plan. Below, by grant year, are the methods to achieve the previously identified objectives.

Year One (see Appendix I for timeline)

1.1 95% of infants born in Arkansas birth facilities will receive an in-hospital, before

discharge hearing screen.

Act 1559 of 1999 mandates hospitals with more than 50 births annually will provide or arrange for a bilateral physiologic hearing screen on each birth. It is estimated that promulgated rules and regulations will take effect in September 2000; the year provided in this objective is designed to give hospitals beginning their programs at this point time to refine and gain experience with the hearing screening program. A 95% benchmark was chosen based on the fact that approximately 98% of all births in Arkansas are covered under the 1999 legislation, but it is unlikely that 100% of those can be tested before discharge (due to, for example, equipment malfunction).

1.1 Implement quality assurance measures and database management to facilitate tracking and follow-up efforts.

With the expansion of the current Arkansas screening program to encompass surveillance and intervention, new monitoring and reporting activities are needed to measure program efficacy. The requested Management Program Analyst II will be responsible for evaluating the current IHP monitoring and reporting systems and revising those as the EHDI system is put into place. The person in this position will also develop handbooks/manuals for IHP consumer use (e.g., hospital staff), conduct workshops to educate IHP and health care personnel about new IHP systems and procedures, and supervise IHP support staff.

1.2 Design a system for sharing information among state agencies regarding hearing loss about the 0-3 population (e.g., Department of Health, First Connections, Arkansas School for the Deaf--Early Intervention) and service providers (e.g., Easter Seals).

Confidentiality must remain a priority in this endeavor, but to provide adequate tracking and follow-up for children with hearing loss some system of information exchange is needed. Toward that end, a meeting of representatives from the various state agencies involved with the 0-3 population is a necessary first step. One avenue planned is to present this issue to the Interagency Coordinating Council, the committee that has oversight of Arkansas services for the 0-3 population. A presentation by the project director to this group is scheduled for September 2000. A second group with whom to explore this issue is service providers, once details are worked out among state agencies.

1.3 Provide birth hospitals electronic data submission capability to the Infant Hearing Program.

The Arkansas Department of Health has engaged an outside data systems contractor to oversee the transfer of databases and computer programs from the main frame system to personal computers. The firm chosen will design a PC-based secure software system with Internet communication capability. The new database will be compatible with the rules of the Health Insurance Portability and Accountability Act (HIPAA). It is anticipated that the database designed for the Infant Hearing Program will serve as an example of the new relational database system planned for the Department of Health. A relational database framework will allow demographic information on individuals to be entered by the hospital only once, but several programs within the Department of Health (e.g., Infant Hearing Screening, Genetics Screening, Infant Mortality, Birth Certificates) will have access to that information. Accessibility to information can be controlled, ensuring confidentiality and that the data cannot be easily corrupted.

Advantages afforded to hospitals by such software are clear, for example, less paper work and more time for patient care. Advantages for the IHP include drastically reducing the current need to manually enter information into the database, decreasing the possibility of errors, and freeing up individuals' time for other tasks. Once the software is designed, a pilot program with a few hospitals will be initiated to work out any difficulties. After the pilot program, software and training will be made available to all birthing facilities at no cost to them.

2.1 Establish diagnostic and amplification guidelines for practice for audiologists testing and fitting infants and young children.

It is anticipated that the UNHS Advisory Board will assemble a diagnostic/amplification subcommittee, composed of audiologists from across the state currently engaged in testing infants and young children. The subcommittee will review guidelines for practice in use or under consideration by other states/entities and will request input from other audiologists in Arkansas currently engaged in testing infants. Guideline design will follow, after which the guidelines will be disseminated to all licensed audiologists in Arkansas.

3.1 Establish guidelines for practice for hospital personnel to counsel families about hearing screening, hearing loss, and services available in Arkansas for those with hearing loss.

In most hospitals already engaged in UNHS, hospital staff are performing the hearing screening and are also counseling the parents regarding the risk factors, physiologic screening, and follow-up. At least part of this counseling includes the "Hear for Our Children" brochure developed by the IHP and a "provider list" of audiologists across the state testing newborns (Appendix D). What additional information that may be provided verbally is unknown. Plans are under way to survey hospitals about the counseling practices regarding the hearing screening program in each institution. An Early Intervention subcommittee, convened by the UNHS Advisory Board, will develop written materials for parents (including English and Spanish versions) explaining hearing screening methods, the importance of follow-up testing, the importance of hearing for development, and other issues which they deem appropriate. Because hospital staff typically receive only a limited amount of information regarding hearing and hearing loss in their formal training, they are also in need of guidance on talking with parents and answering questions they may have about hearing issues. Therefore, a second item for the Early Intervention subcommittee will be a "script" for hospital personnel to facilitate their verbal interaction with parents/caregivers. After these materials are developed, audiologists and/or hearing educators from the Department of Health will provide inservices to hospital personnel regarding counseling families about hearing.

3.2 Increase public visibility and accessibility of the Infant Hearing Program with current Arkansas Department of Health resources.

There is currently a 1-800 telephone number used by a number of programs within the Department of Health. This consumer resource is operated during regular business hours and operators can either answer questions, transfer calls to the correct department/person, or disseminate printed materials. Collaboration with the 1-800 number will involve paying for a portion of the telephone expenses, providing a limited amount of staffing, and purchasing office supplies. The second initiative in this area is to provide information via the Internet. The Department has recently redesigned its website to include brief descriptions of many of its programs. The Infant Hearing Program has been incorporated onto that site. Plans for the IHP website involve expansion with, e.g., descriptions of hearing screening techniques, information about hearing and speech/language milestones, amplification, services in Arkansas for children with hearing loss, and links to related Internet sites that may be helpful to parents (e.g., A.G. Bell Association for the Deaf; and the National Information Center for Children and Youth with Disabilities--NICHCY). One notable feature of the NICHCY site is that there are web pages in Spanish, providing another opportunity to reach the Latino community in Arkansas.

3.3 Initiate a statewide awareness campaign emphasizing the importance of hearing screening, identification, and intervention.

During 1999 the IHP received follow-up screening information on 33% of infants who failed the initial hospital screen. The reasons for such a low return rate are no doubt varied, but at least one component is a lack of parental understanding about the importance of hearing for speech and language development in infants and young children. There is also a misconception that children must reach a "certain age" before they can be audiologically evaluated. To advance public understanding of the role of hearing in early childhood development, as well as the role of audiologists in hearing health care, an awareness campaign will be designed and implemented.

Although it is anticipated that this awareness campaign will begin in year one, such a campaign will continue for at least the life of the grant. For example, one initiative for grant year two is providing printed materials to parents of children with disabilities, in collaboration with the Governor's Developmental Disability Council (DDC) and First Connections. The DDC has designed a packet which can be tailored to the needs of families with children with particular disabilities, such as hearing loss, to provide them with specific information pertinent to their situation and help them negotiate through government agencies. The media division within the Arkansas Department of Health will be consulted on other ways which might prove fruitful for information dissemination, e.g., ads in parenting magazines, ads in Spanish-language magazines or newspapers, billboards, etc.

The prevailing philosophy of public health in Arkansas is to provide knowledge to individuals that will empower them and allow them to make informed choices in their health care. Initiating a media campaign designed to raise awareness of hearing and the effects of undetected and untreated hearing loss are directly in line with that effort. The media campaign will use the 1-800 number to disseminate information and printed materials.

Year Two

3.4 Hospitals will have a referral rate of no more than 10%, with a <5% target rate.

Several factors have been shown to correlate with refer rates including the technology used and training and experience of screening personnel (e.g., Maxon, White, Behrens, and Vohr, 1995). To monitor these and other items, the IHP and the UNHS Advisory Board have designed an annual reporting form for hospitals (see Appendix J). Some of the information requested includes IHP contact person, who provides the original equipment training for hospital personnel, the trainers' credentials, names of individuals appropriately trained on the hearing screening equipment, a description of quality assurance measures, screening protocol, and pass/refer criteria. The ability of the ADH to monitor not only hospital test results but also individual tester results provides an opportunity to ensure the best quality screening possible. ADH audiologists are also available for inservices to hospital personnel.

The ADH IHP has begun providing feedback on pass/refer rates to hospitals engaged in physiologic screening as a way to help them assess program efficacy. It is anticipated that this feedback will be compiled on a regular basis, perhaps quarterly, and shared with the various institutions. The current mean for percentage of referrals in Arkansas is 8.9%, lower than the stated 10% target; however, the range is wide (0.5% - 33%) with both ABR and OAE in use. Therefore this objective is designed to help each hospital attain and maintain as low a refer rate as possible, given the situation within each hospital.

3.5 95% of children with confirmed hearing losses in the 0-3 year population will be reported to the Arkansas Department of Health Infant Hearing Program.

Although screening results are sent to IHP, diagnostic results are not, as mentioned previously. To facilitate this process, a confirmed hearing loss report will be developed and disseminated to Arkansas audiologists with an explanatory letter. The first year of operation will serve to establish a baseline number of children identified with hearing loss. Because the number of children with hearing loss will vary from year to year, knowing how many children with hearing loss are being served by the various intervention agencies will provide a cross-check for this measure. The 95% target recognizes the importance of knowing about every child with hearing loss; the EHDI program in Arkansas cannot be effective unless each child with hearing loss is identified and placed in the system.

3.6 Conduct a two-day collaborative training session for audiologists on neonatal/infant diagnostic audiology and early intervention requirements in Arkansas.

Performing diagnostic testing on infants and young children is challenging. Further, collecting enough data to fit amplification with some degree of confidence in this population is daunting to many audiologists. To help audiologists gain the clinical expertise needed for this task, a two-day seminar hosted by the IHP is proposed, with a speaker of national repute presenting clinical strategies (e.g., multi-frequency tympanometry; frequency-specific auditory brainstem response). Additionally, though unintentionally, some audiologists are not adhering to federal regulations regarding early intervention services. To ensure an understanding of the requirements of audiologists working with the 0-3 population, a second part of this seminar will focus on the role of the audiologists in this process. It is anticipated that a speaker will be procured from the state early intervention program (First Connections) as part of the collaborative EHDI process.

Year Three

3.7 Hospitals will have a false positive screening rate of <3% and false negative rate of 0%.

To determine success with this objective, a baseline measure of the number of children with confirmed hearing loss must first be acquired. The baseline will be obtained through objective 3.1, designing and disseminating a confirmed hearing loss report for submission to ADH by audiologists. Once the number/estimate of confirmed hearing losses is known, calculating the false positives and false negatives is straightforward. There is, however a question regarding how to accurately assess the false negative rate, i.e., the difference between "late onset/progressive loss" and "false negative." The UNHS Advisory Board will be asked for input on this issue. The stated targets are taken from the 1999 American Academy of Pediatrics Policy Statement.

3.8 Electronically link the Infant Hearing Program with Arkansas Vital Records Birth Certificates, Genetics Screening, Infant Mortality, and School Vision and Hearing Screening Programs.

The technology to perform this task is already available. Performing the pilot project with the software consulting firm will require some amount of time beyond the 2001 date in objective 2.3. Also, preparing the various programs within the Department of Health to use a PC-based relational database may require training for some individuals as the department transitions from a main-frame to a personal computer environment.

Year Four

3.9 80% of children referred on the initial screen will receive hearing re-screen by one month of age.

As the media campaign increases the public's awareness of the importance of hearing (objective 4.3), it is hoped that parents will follow up with indicated audiology services. As that is occurring, three other initiatives to increase the number of children receiving re-screen by one month of age will have begun. The first is that IHP staff will work with hospital personnel to create a system whereby an audiological appointment for follow-up is made and handed to the parents before discharge. Roark (personal communication) reported that parental compliance is higher when arrangements are made for them to have their child's hearing tested. Second, many audiologists who are performing screening on infants are aware of the need to inform the IHP about those results. However, audiologists new to Arkansas or those just beginning to perform infant hearing screening may not be aware of this program and the need to keep it informed. Therefore, vigilance is required on the part of the IHP to ensure audiologists are aware of and are informing the IHP about their youngest clients. Third, increase contact between IHP and the infant's medical home to foster follow-up care.

3.10 Partner with the ADH Healthy Hometown Improvement Project to identify and address

audiology needs in communities, counties, and health regions of the state.

A first step is to bring this need to the attention of Healthy Hometown Improvement Project members, as well as advocacy organizations within the state, for example the Arkansas Speech-Language-Hearing Association. Through the partnership with the Healthy Hometown Project, we hope to identify possible funding sources to take audiology to various regions of the state. Initiatives within different areas of the state may vary depending on particular needs and resources.

Year Five

2.4 80% of children referred on a second hearing screen will receive audiologic evaluation by three months of age.

The planned hearing awareness campaign is expected to help parents understand the importance of follow-up audiologic care. In addition to these efforts, increased surveillance by IHP staff with the infants' medical homes will also be in place and operational, as well as audiologists submitting the confirmed hearing loss reports to the IHP. Although we would like to see and will strive to have 100% of the children tested by three months old, reality dictates 100% is probably not achievable. However, an 80% goal will challenge the Arkansas EHDI program to perform to its fullest potential.

2.4 Obtain intervention information on 90% of children in the 0-3 year population with hearing loss.

In order to reach this objective, objective 2.2 (a plan to share information among state agencies and service providers) must first be implemented. Also necessary is that audiologists are informing the IHP about children with confirmed hearing loss (3.2). These two objectives are to be reached by August 2001 and May 2002, respectively. Once that flow of information is established, entering intervention information into the database will be straightforward, as will be the calculation of the percentage of children about whom we receive information. If a sustainable EHDI system has been put into place, 90% is a reasonable target for this goal.

D. Evaluation

In a program such as EHDI, there are needs for both informal assessment (e.g., speaking to concerns of users) and more formal measures of evaluation (e.g., outcome measures). Informal assessment, integrated into the routine practices of a program, provide information that can be used to make minor changes in program operation and/or objectives. When deciding on the efficacy of an EHDI program or its continued utility, care must and will be taken to engage other program participants (e.g., First Connections) in deciding which evaluation strategies are used and how those are undertaken.

The Arkansas Infant Hearing Program has been in existence for 18 years, with a high-risk registry database in place for the last five years. Several implemented activities, for example providing information to infants' primary care physician regarding hearing loss risk factors and/or hearing screening, are undergoing modification based on experience and anticipation of implementation of the UNHS rules and regulations. Other elements of the existing program provide baseline measures for some of the objectives, for example objective 1.1. In this instance we can determine numerically the effect of our program. Other planned activities for year one do not lend themselves to numerical evaluation, for example, a system to share information among various state agencies or guidelines for diagnostic testing or parent counseling. In these cases, evidence for progress (e.g., how many meetings have occurred, which agencies were represented) will be gathered and submitted in the semi-annual report. The year-end measures for evaluation purposes of objectives 2.1, 2.2, 3.1, and 4.1 will be a useable document; 2.3--software in use by at least some hospitals; 4.2--a website, and 4.3--examples of media pieces and how they were distributed. It is anticipated that in succeeding years the same dichotomy of needed evaluation techniques (quantitative versus process oriented) will exist. Evaluation procedures undertaken will be quantitative whenever possible and qualitative/process-oriented when necessary.

The Department of Health recognizes the need for continuous review of progress in order to make needed adjustments to project strategies. The Department is very willing to participate in such a process with the CDC.

E. Collaborative Efforts

A statewide Early Hearing Detection and Intervention program cannot succeed without collaboration among many entities, both state and private. In Arkansas, the screening and tracking/follow-up components are the responsibility of the Arkansas Department of Health. Audiologists in the state perform identification and diagnosis, and intervention is the responsibility of the Arkansas Department of Human Services and various other providers. The education component must belong to all these groups. In recognition of the collaborative nature of this EHDI project, various organizations have submitted letters of support and can be seen in Appendix K. ADH is actively involved with hospitals and diagnostic centers in carrying out the mandate of Act 1096 of 1993, a high-risk "paper" hearing screen. That interaction will be strengthened with the implementation of Act 1559 of 1999, and the need for cooperation between the screening/diagnostic and intervention pieces of the EHDI program are recognized by all.

Collaboration within the Department of Health among the various programs which monitor screening efforts is also important. The Metabolic/Genetics newborn screening program is located within the Division of Child and Adolescent Health, as is the Infant Hearing Program. The coordinators of these two programs already interact as needed, to share information pertinent to both (e.g., Connexin-26 genetic studies), complete surveys, etc. Also housed within the Division of Child and Adolescent Health is the Hearing and Vision Screening Program, targeted at the school-age population. Future collaboration with Hearing and Vision will allow research on longitudinal questions such as "How many years post-diagnosis does a child require speech-language services for habilitation?". Another benefit of collaboration between these programs would be the continuation of family-friendly "seamless" services.

F. Staffing and Management System

Laura Smith-Olinde, Ph.D. - will serve as project director. Dr. Smith-Olinde has been the coordinator of the Infant Hearing Program since December 1999. Since assuming this role, she has availed herself of every opportunity to broaden her expertise in infant hearing screening and increase her understanding of the current early intervention process within Arkansas. Prior to working at the Department of Health, Dr. Smith-Olinde was an assistant professor with research interests in the area of hearing loss and (virtual) localization. As part of her former position, Dr. Smith-Olinde coordinated research efforts in her laboratory, directed two master's theses, and oversaw numerous graduate student workers. She will provide direct oversight of the grant and direct supervision of the management project analyst. Dr. Smith-Olinde will contribute at least 50% of her time to the project over its course.

Management Project Analyst - see Appendix L for position description

Robert West, M.D. - will serve as medical consultant and provide appropriate technical assistance. Dr. West, a pediatric medical consultant within the Division of Child and Adolescent Health has over 11 years experience with the Department of Health coordinating the tracking and surveillance of the metabolic/genetics newborn screening program.

Bridget Mosley, MPH - will serve as consultant epidemiologist to the project. She will provide input to the medical economist and project director on specific aspects of data analysis and program evaluation. She will contribute 5-10% of her time to the project over its course.

Joyce Eatmon, MPA - holds the title of Medical Economist within the Division of Child and Adolescent Health. She previously served in the Center for Health Statistics, where she was involved in data analysis and production of statistical reports. Ms. Eatmon will provide help to the Management Project Analyst for data analysis, in consultation with epidemiology staff, health statistics staff and the project director, as needed. It is estimated that 5-10% of her time will be spent on this project over its course.

Marilyn Dunavant - Director of the Division of Child and Adolescent Health, will serve as project co-director, providing input on administrative aspects of the program.

There are also an additional 1.5 FTE audiologists and 2.0 FTE support staff available in the Infant Hearing Program. It is expected that in the performance of their regular duties they will be engaged in activities planned for the grant period. One-page resumes for all key staff are included as Appendix M.

G. Organizational Structure and Facilities

The Arkansas Department of Health is currently undergoing a restructuring process, with a view to instituting team management and streamlining program decision-making procedures. The new structure, although not completely defined at present, should allow for greater program flexibility and faster response for indicated changes. The Infant Hearing Program is part of Child and Adolescent Health, which is housed in the Maternal and Child Health section of the Public Health Programs Group within the Statewide Services Group (Appendix H, interim organizational chart). The IHP is housed in sufficient office space, with room for the addition of the management project analyst. Equipment needs are adequately met for current staff; a new computer is included in the budget for the anticipated staff addition. The other pieces of equipment included in this grant are a laptop computer and an LCD projector, to enhance planned in-services and other presentations.

Endnotes

¹ Reports run include: Infants at Risk by County; Infants at Risk by Clinic/Physician; Infants at Risk by Hospital; All Infants Receiving a Test; All Infants Tested - Questionable; All Infants Tested by Testsite

² The Arkansas School for the Deaf program is charged with helping parents obtain services in their particular region of Arkansas for their 0-5 year old child with hearing loss.

References

American Academy of Pediatrics Task Force on Newborn and Infant Hearing. (1999). Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics, 103(2), 527-530.

Joint Committee on Infant Hearing. (1994). Joint Committee on Infant Hearing 1994 Position Statement. AAO-HNS Bulletin, 13, 12.

Maxon, AB, White, DR, Behrens, TR, and Vohr, BR. (1995). Referral Rates and Cost Efficiency in a Universal Newborn Hearing Screening Program Using Transient Evoked Otoacoustic Emissions. J. American Academy of Audiology, 6, 271-277.

Roark, S. (2000). Email response to Smith-Olinde regarding Mississippi's follow-up procedures.

US Department of Health and Human Services. (1990). Healthy People 2000: National Health Promotion and Disease Prevention Objectives. Washington, DC: Public Health Service.