MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT
Project Title: Integrated Services for CSHCN: Universal Newborn Hearing Screening
Project Director: Jeffrey G. Lobas, M.D. Phone: (319)356-1118
Organization name: Iowa Child Health Specialty Clinics
Address: 247 University Hospital School
100 Hawkins Dr.
Iowa City, IA 52242-1011
Contact Person: Lenore Holte, Ph.D. Phone:(319)356-1168
Fax: (319) 356-8284 email: lenore-holte@uiowa.edu

1.1 Summary of Project Narrative

A. Organizational Setting

The principal investigator of this project will be the state director for MCHB programs for Children with Special Health Care Needs. The project will be carried out under the direction of the senior audiologist at Iowa's University Affiliated Program with assistance from Part C IDEA technical assistants from the Iowa Departments of Public Health and Education. Thus the settings will include all of Iowa’s birthing hospitals, its Area Education Agencies and its University Affiliated Program at the University of Iowa.

B. Purpose

The primary purpose of the proposed project will be to develop a system of universal newborn hearing screening, data management, tracking, and follow-up in Iowa to ensure diagnosis of congenital hearing loss by three months of age and entry into early intervention by six months.

C. Problem

Iowa has made significant progress toward universal physiological hearing screening, but implementation of a statewide system of reporting of screening results and timely follow-up has been more sporadic. As such, it is not known how many newborns in the state have actually had their hearing screened, how many of those referred returned for follow-up, how many were ultimately diagnosed as hearing-impaired, or at what ages they received amplification and entered early intervention. There is also a lack of public awareness of the importance of newborn hearing screening, a need for professional continuing education to serve this population, and a need for mechanisms to sustain this system of screening, follow-up, and intervention.

D. Goals and Objectives

Goal 1: To provide newborn hearing screening services to all of Iowa's children and to develop a system to ensure early diagnosis of infant hearing loss.

Goal 2: To develop a system of data management for newborn hearing screening results to obtain accurate state data regarding screening results, diagnostic follow-up, tracking, entry into early intervention, and linkage to a medical home.

Goal 3: To develop a sustainable system of newborn hearing screening, follow-up, referral, and tracking activities beyond the project period.

Goal 4: To increase public awareness of the importance of good hearing to speech and language development and to increase public awareness of Iowa's newborn hearing screening program.

Goal 5: To provide Iowa's audiologists with the skills needed to serve infants with hearing loss.

Goal 6: To coordinate results of and information from the newborn hearing screening identification system to other applicable state data systems.

Goal 7: To establish a state Newborn Hearing Screening Advisory Committee

E. Methodology

Activities to accomplish goal 1 will include the following: establish newborn hearing screening programs in all hospitals with over 50 births per year, develop a plan for screening babies born in hospitals with fewer than 50 births per year, develop a plan for screening Iowa's babies born at home, develop a plan to monitor those infants who pass newborn hearing screening, but have high risk factors for progressive hearing loss, standardize parent consent forms and informational materials used by hospitals, standardize screening protocols, develop a plan to screen babies who move into Iowa in the first six months of life.

Activities to accomplish goal 2 will include the following: train Early ACCESS staff regarding procedures for linkage to a medical home, train and assist Child Health Specialty Clinics (CHSC) regional staff to help with entry into early intervention, link families to family support programs though Early Access Regional coordinators, provide newborn hearing screening data management software to hospitals and Area Educational Agencies (AEAs) to track newborn hearing screening results on individual babies and to calculate quality control indicators for screening programs, develop a state database to monitor the progress of newborn hearing screening in the state, to provide statewide quality control indicators, compare state database of newborn hearing screening results during the birth admission to the Electronic Birth Certificate (EBC) and report this information to the Maternal and Child Health Bureau for the Title V performance measure on newborn hearing screening rate, publish state data on progress in lowering the age at which infant hearing impairment is diagnosed and the age at which intervention commences.

Activities to accomplish goal 3 will include the following: Work toward full reimbursement of health care providers for newborn hearing screening billed as a separate charge by all third-party payers, assess the feasibility of state legislation to mandate universal newborn hearing screening

Activities to accomplish goal 4 include the following: Distribute newborn hearing screening informational brochure to all expectant parents, provide information to AEAs for child-find fairs, provide ongoing support to the Perinatal Review team, develop parent education materials on Iowa's Newborn hearing screening website, educate physicians and nurses about the program

Activities to accomplish goal 5 include the following: Provide continuing education to audiologists regarding pediatric diagnostic audiological methods and amplification through workshops in meetings and via the Iowa Communications Network (ICN), provide continuing education to audiologists and teachers of the hearing-impaired regarding early intervention techniques with hearing-impaired infants and families through workshops in meetings of the Iowa Speech and Hearing Association and via the ICN, develop informational materials for professionals on Iowa's newborn hearing screening website, provide graduate students with experiences in all aspects of managing newborn hearing screening programs

Activities to accomplished goal 6 above include coordination with genetic and metabolic screening, the deaf/blind census, the birth defects registry, and the perinatal review committee.

A state Newborn Hearing Screening Advisory Committee will also meet quarterly to provide direction to project personnel in accomplishing goals 1 through 6.

F. Evaluation

The addition of newborn hearing screening fields in the EBC will serve as a check for accuracy in the aggregate data in the newborn hearing screening data management system regarding status of screening programs during birth admission. In addition, data management software will allow for quarterly evaluation of program quality indicators, for the entire state and for individual screening programs. A billing survey will be distributed annual to evaluate project activities to enhance billing and reimbursement practices. Impact of public awareness activities on Iowa's families will be monitored by evaluating the number of families annually refusing newborn hearing screening, by evaluating visits to the consumer education portion of the Iowa newborn hearing screening website, and by a family satisfaction questionnaire. Also, the impact of continuing professional education will be monitored through the use of course evaluations after each continuing education activity. To study the impact of all program components over the project period, the receptive and expressive language abilities of Iowa's hearing-impaired four-year-olds will be measured annually.

1.2 Text of Annotation

The purpose of the proposed project is to develop a sustainable statewide system of universal newborn hearing screening, diagnosis, and intervention to ensure entry of all congenitally hearing-impaired children into appropriate intervention by six months of age. While Iowa has made significant progress toward universal screening, the tracking of screening results, data reporting and appropriate follow-up have been more sporadic. This project is designed to ensure screening to all of Iowa's newborns, link these results to a medical home and appropriate intervention, increase public awareness of the importance of early detection of hearing loss, educate Iowa's professionals to serve this population, and to provide a mechanism for ongoing support of these activities beyond the project period.

1.3 Key Words: congenital hearing loss, newborn hearing screening

CHAPTER I PURPOSE OF THE PROJECT

1.1 Description of the problem

Approximately 37,000 children are born in Iowa annually. As of the December 1, 1998 Child Count, Iowa reported 796 deaf/hard of hearing students, ages 6-21 years. The state does not require a breakdown according to disability of the total number of 5,577 preschool students aged 3-5, therefore, we do not have accurate numbers of this population. However data are available from 1998-99 End-of-Year reports from Iowa's Area Educational Agencies (AEAs) that indicate over 137 preschool aged children are identified with moderate, severe or profound hearing losses. According to the Part C Federal Data Tables for December 1, 1998 as reported to the Office of Special Education Programs, Iowa has 118 infants and toddlers (0 through 2) and their families receiving audiology services as recorded on Individualized Family Service Plans. The most recent estimates of the prevalence of congenital hearing impairment, available from states such as Rhode Island (Vohr et al.,(1998) Journal of Pediatrics, 133, 353) and Texas (Finitzo et al. (1998) Pediatrics, 102, 1452) are about 2.5 per thousand babies born with hearing impairment. From these estimates, Iowa should have approximately 277 children aged 3 to 5 and an additional 277 children aged 0 to 3 identified as having permanent hearing loss. It is clear that some of these have not been identified and/or entered into early intervention services.

As described in Chapter II below, Iowa has made significant progress toward universal physiological screening, but implementation of a statewide system for reporting of screening results and timely follow-up has been more sporadic. As such it is not known how many newborns in the state have actually had their hearing screened, how many of those referred returned for follow-up, how many were ultimately diagnosed as hearing-impaired, or at what ages they received amplification and entered early intervention. There is also a lack of public awareness of the importance of newborn hearing screening.

1.2 Rationale and evidence supporting proposed intervention

Published data from universal physiological newborn hearing screening programs in Texas show that 31% of families requiring follow-up care did not return for this care. This has been attributed to the fact that, once a baby leaves the birth hospital, there is sometimes a loss in the aggressiveness with which follow-up hearing health care is pursued. Data from Rhode Island, the first state to successfully implement a program of universal physiological newborn hearing screening, do show a significant improvement in age of identification of hearing loss and age of amplification over the first four years of the program. The Rhode Island program benefits from being comprised of only a few hospitals. Tremendous effort was made in that state to educate parents and the public about the program. Thus there is evidence to suggest that screening, along with parent education, can reduce the ages at which hearing impairment is identified and amplification is fitted.

1.3 Category of proposal

This application is for a program in the stage of implementation. Although Iowa currently has newborn hearing screening programs in hospitals responsible for 96% of its annual births, other program components, such as tracking and follow-up of referrals, public awareness, and professional education, are not 90% complete.

1.4 Anticipated benefit

The goals of the project include efforts to improve Iowa's screening rate and to improve the specificity of existing programs. The benefit of an improved screening rate will be the assurance that no congenital hearing impairment is missed by the screen. The benefits of improved specificity will be improved cost efficiency and reduction in unnecessary parental anxiety. Coordination with the child's medical home, support for families, public awareness and professional education will ensure that recommendations following screening, particularly recommendations for full diagnostic evaluation and entry into early intervention, will be carried out in a timely manner.

CHAPTER II ORGANIZATIONAL EXPERIENCE AND CAPACITY

2.1 Newborn hearing screening in Iowa

Iowa has worked diligently over the past seven years to establish a voluntary newborn hearing screening system. Few funds have been committed to this effort in Iowa, yet the system is very much in place for the majority of Iowa families with newborns. The Iowa Department of Public Health, Area Education Agencies under the Iowa Department of Education, many Iowa hospitals with birthing centers, and University Hospital School have all worked together to develop Iowa's newborn hearing screening system. Where the screening portion of the system is essentially in place, the remaining components of the related system are all in need of careful attention and planning for the system to be a success. These system components include: referrals, follow-up, diagnostic evaluation, development of a treatment plan, timely entrance into early intervention services (Early ACCESS, IDEA Part C), and linking with a medical home.

In 1992 a grass roots group of concerned professionals and consumers called the Iowa Newborn Audiology Committee was developed. This group was acutely aware that Iowa infants and toddlers with hearing loss were not being identified as early as possible and thus missed out on meaningful language input during the critical period for language learning. The group approached the Iowa Department of Public Health (IDPH) in 1994 for assistance in meeting the need for early detection of hearing loss and entrance into early intervention programs for hearing-impaired children. IDPH then convened an ad hoc workgroup to review the issue and make recommendations to the department. The Ad Hoc Newborn Hearing Screening Workgroup included representatives from professional organizations, private and public health care providers, educators, human services providers, Prevention of Disability Policy Council members, consumers, and others interested in newborn hearing. At that time hearing screening of newborns with high risk factors was in place in Iowa’s three level III perinatal centers. The workgroup met three times and reported its recommendations to IDPH on February 10, 1995.

Because the workgroup was aware that high risk hearing screening only identifies about half of all infants with congenital hearing loss, it recognized the need for universal screening of newborns. The primary recommendation of the Iowa Ad Hoc Newborn Hearing Screening Workgroup was to have in place a system for the early detection of congenital hearing impairment in newborns and infants by January 1, 1998. The recommendation included a phased approach, with priority given to universal newborn hearing screening in Iowa's level III perinatal centers, followed by level II centers, with hearing screening provided to all Iowa newborns, including those born in level I centers, by January 1, 1998.

Funds for the implementation of universal newborn hearing screening in Iowa were provided by the Iowa Department of Education (IDE) to IDPH utilizing Part C (early intervention) federal funds from the Individuals with Disabilities Education Act (IDEA). IDPH contracted with the University Hospital School (UHS) of the University of Iowa, which is Iowa's University Affiliated Program (UAP) to provide training and technical assistance to Iowa's birthing hospitals to screen all newborns' hearing. This activity was coordinated through the office of the director for Iowa's Maternal and Child Health Block Grant and with the technical assistance of IDPH's Part C Early Intervention Technical Assistant in that office. To implement this massive program of training, UHS has been able to utilize a network of hearing health care professionals serving in Iowa's unique system of Area Educational Agencies (AEAs). These AEAs were developed in the mid-1970s in response to Public Law 94-142 regarding educational of children with special needs in the least restrictive environment. The state of Iowa is divided into 15 AEAs, numbered 1 through 7 and 9 through 16, which are multi-service agencies providing special education, media, and education services to school districts within their geographic boundaries. Each of Iowa's 15 AEAs employs between two and twelve audiologists to provide educational audiology services to students ages 0 to 21 years. In two AEAs private practice audiologists in the community have also helped to serve audiological support functions for newborn hearing screening.

By January 1998 universal newborn hearing screening programs existed in hospitals which accounted for 76% off all hospital births in Iowa. Using Part C (IDEA) funds competitive grant awards were given to 35 Iowa hospitals in September 1998 in the amount of $2000 each to assist in the acquisition of newborn hearing screening equipment. As a requirement of these grant funds, hospitals must collaborate with their local Area Education Agencies, private audiology providers and other public health providers so that they can assist the hospitals with screening interpretation, diagnosis, referral and follow up. This grant program increased the number of hospitals screening to those that account for 96% of Iowa's births. Training was provided to all of these grantees in the Fall of 1998 through the network of AEA audiologists. By January 1, 1999, all hospitals which were awarded small equipment grants to fund newborn hearing screening equipment in had begun their screening programs. All other hospitals which had been screening continued to do so and a few new hospitals began programs with their own funding sources.

2.2 Professional newborn hearing screening education in Iowa

Continuing education for state audiologists has been provided in two annual Spring conferences in February, 1998 and March, 1999. In 1999 UHS, along with IDPH, IDE, and Iowa Methodist Medical Center sponsored the Second Annual Early Hearing Detection and Intervention Conference at the Iowa Methodist Conference and Learning Center.(Appendix A). This meeting provided 104 community-based health and education personnel with valuable information about newborn hearing screening, techniques for audiological assessment of and fitting amplification on the hearing-impaired infant, along with practical newborn hearing screening program operation information. Invited speakers came from Texas, Colorado, Nebraska, and Iowa. Participant evaluations indicated that all speakers were well-received and participants felt it was a valuable experience. All agreed that a highlight of the conference was the keynote address by Marion Downs from the Marion Downs Center for Infant Hearing in Boulder, Colorado. Dr. Downs is widely regarded as the first advocate of newborn hearing screening in the United States and she shared with the group the evolution of these programs over her 50-year career as an audiologist.

2.3 Current newborn hearing screening programs in Iowa

For the past six years the IDPH has been the leader in Iowa to establish a universal newborn hearing screening program. Newborn hearing screening for all Iowa newborns prior to discharge is a standard of care that IDPH encourages hospitals to adopt. At present Early ACCESS, IDEA Part C, funds are the sole state funding source for this initiative in Iowa, allocating $80,000 for FFY’00. Quota Clubs International also provided funding to hospitals for data tracking software in FFY 98.

All birth hospitals in Iowa are presented in Appendix B. Birthing data from 1998 are still considered preliminary. Also included in these spreadsheets are some program details and screening data that have been submitted. Sharing of data has been a problem for some hospitals, so that this data set is currently incomplete. The data on number of babies screened and the screening results have been gathered from three sources:

Hospitals which were awarded small grants to purchase screening equipment in September 1998 were surveyed by the IDPH in the office of the technical assistant for Early ACCESS (IDEA, Part C) and these survey results are the source of data for these hospitals. These programs report data from a variety of reporting periods, differing in length and in starting date. Total number of months in reporting period, as best determined from the survey responses, are listed.

Other hospitals, most of which had existing screening programs before the grant offerings, have been submitting data to an audiologist from AEA #9 on diskettes and utilizing the HITRACK data management software. These records served as the source of screening data from several other hospitals.

Five other large hospitals, the University of Iowa Hospitals and Clinics in Iowa City, Iowa Methodist Medical Center in Des Moines, Iowa Lutheran Hospital in Des Moines, St. Luke's Hospital in Cedar Rapids, and Ottumwa Regional Health Center submitted data directly to the University Hospital School upon telephone request. Similar requests have been made of other hospitals, but these data are currently unavailable. Newborn hearing screening status of all Iowa hospitals with birthing centers is also included in Appendix C.

It is clear that there is a need to work toward, not only universal screening, but universal reporting, to accurately assess the percentage of Iowa newborns who are having their hearing screened. There is also a need for more accurate accounting of numbers of live births and transfers. Future cooperation of several hospitals who have not previously submitted data has been promised and it is anticipated that more data will be available by the end of the 1999 calendar year.

The greatest difficulty in interpreting these current data lies in the fact that all hospitals were reporting for a variety of time periods, from 1 month to 1 year. It is important to avoid inaccurate data, but there are some conclusions that can be drawn from these numbers: Using total number of births in 1998, the most recent year for which provisional data are available, universal newborn hearing screening programs now exist in Iowa hospitals which account for 96% of births in Iowa. It should be stressed that this has been accomplished in the absence of a legislative mandate. No systematic plan has yet been developed for home births in Iowa. There were 283 of these births in 1998. There is one hospital with over 100 births annually which is not currently screening the hearing of newborns. This hospital purchased an automated Transient Evoked Otoacoustic Emissions (TEOAE) screening instrument in November 1999. Training of screeners is scheduled to begin in January 2000.

Of the 18,518 newborns born in 1999 during the varying data collection times listed here on whom screening data were reported, 17,411 (94%) had their hearing screened. Total born during the reporting period minus number screened is equal to number missed. This is not a high miss rate (6%), but efforts should be made to reduce it. We anticipate that the miss rate will decline in these programs in the coming year as hospital staff become more accustomed to incorporating hearing screening into their daily routines. It is vital to keep miss rates low, because recent published data from Texas and New York and internal data made available by personal communication from Iowa Methodist Medical Center in Des Moines indicates that only about 40-50% of babies missed before discharge will return for audiological follow-up. These sources also indicate that the return rate for evaluation by those receiving a "refer" recommendation are much higher, reaching 70-80%.

Of the 17,411 newborns screened during the varying data reporting periods here, 731 (4%) received a "refer" decision. This is also unacceptably high, but lower than the refer rates experienced in the first few years of screening in other states which rely heavily on otoacoustic emissions screening technology, most notably Rhode Island. It will be crucial to reduce this referral rate and suggested steps to do so are outlined in this proposal.

There are currently 79 birthing hospitals in Iowa with universal newborn hearing screening programs. A variety of technologies are used to screen newborns hearing in Iowa and the choices made by the programs seem to be appropriate for the size of each program. Eight hospitals use automated Auditory Brainstem Response (ALGO - 2), 35 hospitals use TEOAEs (ILO88, Echoscreen) and an additional hospital is scheduled to use these soon, 33 hospitals use Distortion Product Otoacoustic Emissions (AudX, GSI60,Eroscan), and type of equipment was unavailable at the time of preparation of this proposal from the remaining 3 screening hospitals.

Screening hospitals in Iowa vary in practices regarding informed consent from parents. Some hospitals, generally level III perinatal centers and some regional level II centers, report that newborn hearing screening is considered a standard of care and for others it is a standing order from physicians. These centers do not obtain parent consent for screening. Other hospitals, generally some level II and all level I centers, do obtain individual parental consent to screen and to share screening results with the AEA. Consent practices in the state are currently under study. It is recognized that there is a tremendous need to standardize consent procedures for screening and release of screening information. This is one of the objectives of the proposed project.

Practices in the state also vary with respect to screening procedures. Of course, the type of technology utilized will determine many aspects of procedure. Those hospitals employing staff audiologists as screening program managers have developed their own screening protocols. These are Genesis Health Systems in Davenport, St. Luke's Hospital in Cedar Rapids, Iowa Methodist Medical System in Des Moines, Iowa Lutheran Hospital in Des Moines, University of Iowa Health Care in Iowa City, Ottumwa Regional Health Center, and Skiff Medical Center in Newton. Among other screening programs, screeners are obstetrical nurses and screening protocols have been developed by private or AEA audiologists with whom they consult. Standardization of screening protocols is another objective of the proposed project.

Those programs using automated Auditory Brainstem Response (AABR) screening use the default settings provided by the manufacturer of the ALGO-2 (NATUS, Inc.). This instrument uses an algorithm to match the newborn's AABR response to a template from a normal-hearing newborn. Electrode montage varies with programs and within each program, depending on certain physical characteristics of each baby's head. Clicks are presented at 30 dB nHL to each ear and the ABR is recorded, although never viewed by the screener. Goodness-of-fit to the template is expressed as a "likelihood ratio". A likelihood ratio of 160 is considered a screening pass. If this ratio is not obtained screening continues until 15,000 clicks are presented in each ear. If the criterion fit is never obtained, the baby has a "refer" result and it is specified whether this is a bilateral result or unilateral with referred ear specified.

All screeners using otoacoustic emissions (OAEs) are trained to screen at approximately 24 hours of age. If a baby receives a "refer" decision at the initial screen in either ear screeners are encouraged to rescreen as close to discharge as possible, to try to reduce the number of false positive results. In Iowa's newborn hearing screening programs using OAEs an attempt has been made to provide extensive training in ensuring removal of vernix by massaging the tragus and by inserting, removing, cleaning, and reinserting the OAE probe. The results of the best birth admission screen are recorded as the screening result for each ear.

Programs using Distortion Product Otoacoustic Emissions (DPOAE) instruments most often use an F1 level of 65 dB SPL and an F2 level of 55 dB SPL. DPOAEs are recorded at F2 = 2000, 3000, 4000, and 5000 Hz. The most common criterion for passing is that an ear passes when the DP to noise ratio equals or exceeds 5 dB at each of the tested frequency pairs. These criteria vary somewhat in programs around the state. Because the most common DPOAE screening instrument in use in Iowa, the Bio-logic Audx, prints out sticky notes with screening results, these notes are the most common form of chart documentation for baby's born in hospitals screening with DPOAEs. Screening data, including numbers of babies screened, numbers passed, number of misses and number of refers following at least two birth-admission screens are recorded manually, along with the names of children missed and referred who need audiologic diagnostic follow-up.

Programs screening with TEOAEs also vary with respect to criteria for passing. Most screeners have been trained to use the following criteria for passing a TEOAE screen: The screen must include at least 50 low noise samples with the stimulus level maintained at 78-82 dB peak SPL and emission reproducibility must meet or exceed 50% in the 1600 Hz band and 70% in each of the 2400, 3200, and 4000 Hz bands.

Many babies who fail screening are asked to return to their local AEA audiology office or birth hospital for a free rescreen at ages 2 to 6 weeks. This service is provided by AEA audiologists or obstetrical nursing staff with IDEA Part C federal funds or Part B special education funds. After this rescreen, newborns who are still in need of a diagnostic audiological evaluation are referred to one of nine sites in seven cities that are available in the state which can provide diagnostic auditory brainstem response (ABR) evaluations and otoacoustic emissions (OAE) evaluations to young infants. The AEA audiology services are not equipped for physiological diagnostic audiologic evaluation of infants, but most are equipped for behavioral testing of older infants and toddlers. Most of these diagnostic audiological services also provide hearing aid fitting to infants and toddlers. AEAs in western Iowa also refer children to the Boystown National Research Hospital in Omaha Nebraska for services. Letters of support from each of these sites are provided in Appendix D.

2.4 Early intervention for hearing-impaired infants in Iowa

Once an infant in Iowa is identified as hearing-impaired, home-based early intervention services for children with hearing impairment are provided primarily through each AEA. Each AEA hearing team includes audiologists and teachers of the hearing-impaired. All children with disabilities in Iowa receive services appropriate to their need and as determined by their IFSP/IEP team. AEAs utilize IDEA Part C federal funds from IDE to support costs associated with requirements for referral, evaluation, assessment, and the IFSP.

Each AEA has at least one itinerant teacher of the hearing impaired on staff. Several local education agencies (LEAs) hire their own teachers on staff. In addition to teachers of the deaf and hard of hearing, most deaf or hard of hearing children also receive services, as determined by their IFSP/IEP team, from audiologists, speech-language pathologists, general education teachers, early childhood special education teachers, psychologists, social workers, physical therapists and occupational therapists. In the 1999-2000 school year, Iowa currently employs 131 teachers of the deaf and hard of hearing (AEA and Iowa School for the Deaf combined). Of the 131 teachers, 45 are itinerant who serve children birth - 21, 62 educational audiologists, and 150 interpreters.

All Iowa AEAs have teachers of the deaf and hard of hearing. Services vary according to AEA, location, and need of child. Some receive most services from teachers of the hearing impaired while others receive services mainly from early childhood special education teachers. Many times that begins for very young children as home-based, moving to part home-based and part center-based services. More and more people have specialized training (e.g., SKI*HI) but there is a continual need for training new staff, updating all staff on new technology, and continued staff development.

SKI*HI (pronounced "sky high") is a model program designed for professionals who work with young deaf and hard of hearing children (birth ­ 5 years) and their families. SKI*HI is family-centered, home-based programming for infants, toddlers, and preschool-aged children with hearing impairment. The first SKI*HI demonstration program began in 1972 and outreach services began in 1975. The SKI*HI model is a part of the SKI*HI Institute located at Utah State University in Logan, Utah.

SKI*HI training has been available in Iowa, statewide, continuing since the 1994-95 school year. This specialized training is targeted to professionals working with young children with hearing loss and their families. To date, over 100 professionals in Iowa have completed the training. Of the professionals who have completed training, 48 were teachers of the deaf and hard of hearing, 16 were audiologists, and the remainder were from the following discipline areas: early childhood special education or speech-language pathologists, consultants, psychologist, physical therapist, and teacher of the visually impaired. Letters of support for this application from each AEA are included in Appendix D.

2.5 Iowa Early ACCESS and Child Health Specialty Clinics

Early ACCESS, formerly known as Iowa’s System of Early Intervention Services, is a federal program under IDEA, Part C. This system is a statewide, interagency collaborative system between IDPH, IDE, the Iowa Department of Human Services, and Child Health Specialty Clinics (Title V, CSHCN). This system is a partnership between families with young children, birth to age three, and providers from local Public Health, Human Service, Child Health Specialty Clinics and, Area Education Agencies. Partnerships also exist for families with other public or private service and resource providers.

Multiple child find activities exist under Early ACCESS. Universal newborn hearing screening is an opportunity to identify infants and toddlers with a hearing impairment at the earliest time possible. The existing structure of support and referral under Early ACCESS will allow the expansion of a newborn hearing screening system. The entire Early ACCESS is charged under the federal law to coordinate and support planning, implementation and evaluation of a comprehensive approach for early intervention. Through the goals and objectives as outlined in this application the child find system related to congenital hearing loss will be strengthened.

CHSC is the public agency in Iowa authorized by Title V of the Social Security Act to plan and deliver health care services for Iowa's children with special health care needs. To this end, CHSC has long been dedicated to directly provide health care services as well as to influence the service system infrastructure to deliver more effective, higher quality health care services. CHSC employs approximately 65 staff members, including a cadre of community-based pediatric nurse clinicians and practitioners located in 14 communities throughout Iowa (See map, Appendix E). CHSC regional centers are located in 5 of the 7 cities that house facilities for audiological diagnostic evaluation of infants. CHSC also contracts with community physicians, nutritionists, and parents experienced in serving and raising children with special health care needs.

Beyond delivering direct health care services, CHSC collaborates with public and private organizations to formulate service opportunities that meet the cross-disciplinary needs of children with complex health problems and their families. CHSC staff members actively collaborate in Part C activities throughout the state and one staff member also serves as a Technical Assistant for Part C. Staff are well qualified in the area of care coordination, service coordination, and delivering services that are family-centered and culturally appropriate.

CHSC staff understand the complexities of the service system and are motivated to participate in state and national efforts to improve the coordination and national planning of system components. Work groups and committees that could further advocate for the universal hearing screening project, on which CHSC staff members currently serve, are: the Federal Supplemental Security Income/Children with Special Health Care Needs workgroup, the Association of Maternal and Child Health Program's subcommittee on Policy and Program, Family Voices (a national organization comprised of advocates and parents of children with special health care needs), Healthy Iowans 2010, subcommittees for Children with Special Health Care Needs and the Quality Assurance Committee of the State Child Insurance Program, the Iowa Birth Defects Advisory Committee, the State Maternal and Child Health Advisory Council, and the state Maternal and Child Health Strategic Planning Committee.

CHSC staff are also experienced in participating in planning groups for national educational events including the Illinois Institute for Maternal and Child Health Leadership in Chicago, Illinois, the Institute for Child Health Policy's Supplemental Security Income Instructional Videoconferences, and the CSHCN Continuing Education Institute in Columbus, Ohio.

CHSC Staff are expert presenters and have made recent national presentations on such topics as the Iowa Autism Services Program, Children’s Care Coordination in the Iowa Medicaid Home and Community Based Services Ill and Handicapped Waiver Program, involving parents in decisions made for children with special health care needs, and home and community based services.

CHAPTER III ADMINISTRATION AND ORGANIZATION

In developing a universal newborn hearing screening system in Iowa, Early ACCESS has been positioned as the focal point for the system. The major players for Early ACCESS are also involved in the full development and implementation of the newborn hearing screening system. IDPH has a unique relationship with many public and private health care providers, with the Association of Iowa Hospitals and Health Systems and with Title V, CSCHN program. In addition, IDPH is the applicant for Iowa’s Title V Block Grant.

Child Health Specialty Clinics (CHSC) and UHS are all located under the University of Iowa and University Affiliated Programs organizational structure. Multiple agreements exist between CHSC, UHS, and IDPH for such things as Perinatal Review Committee, High-Risk Infant Follow-Up programs and others. Both IDPH and CHSC are state signatory agencies for Early ACCESS interagency agreement to meet federal regulations. A diagram that outlines the administrative and organizational structure for this project is located in Appendix F.

The Early ACCESS state participating agencies and UHS have agreed that the applicant for this grant should be Child Health Specialty Clinics (Title V, CSHCN) based on their current relationship with Iowa providers, hospitals and specialty programs/clinics. CHSC regional staff will be able to assist in the following activities: follow up, referral, link to Early ACCESS (early intervention services), and link to a medical home. In some instances it will be appropriate for the regional CHSC staff to serve as service coordinators for these hearing impaired infants and toddlers and their families.

The purpose of Early ACCESS is for families and staff to work together in identifying, coordinating and providing needed services and resources that will help the family assist their infant or toddler to grow and develop. Any Iowa infant or toddler, birth to the child's third birthday (0-3) with a developmental delay or disability and their family may be served if determined eligible. Children served have a 25% delay in one or more areas of development or have a known condition that has a high probability of resulting in a later delay in development. Contracts with local agencies, who provide services or resources to families and children ages 0-3, having a contract with the IDPH must be involved with the Early ACCESS system on a local and regional level. Their involvement includes child find, service coordination, participation on regional councils, participation on Individualized Family Service Plans (IFSP) teams and other relevant activities. Currently IDPH is involved in developing a new interagency agreement for Early ACCESS. This interagency agreement is initiated by IDE and includes IDPH, IDHS, and CHSC. The agreement will spell out financial obligations of each partnering agency.

CHAPTER IV AVAILABLE RESOURCES

University Hospital School (UHS), Child Health Specialty Clinics (CHSC), the Iowa Department of Public Health (IDPH), the Iowa Department of Education (IDE) and Early ACCESS will all contribute various human and non-human resources for this grant application and the overall newborn hearing screening initiative. Specific details of their contributions are outlined in their respective letters of support. However, a summary follows for each entity.

4.1 The University Hospital School

UHS is Iowa's University Affiliated Program (UAP). It is a 100,000 net square foot facility devoted exclusively to services for persons with disabilities and their families. UHS/IUAP provides medical and health-related services and supports to more than 3,500 individuals with disabilities, and to their families, each year. A wide range of disciplines are represented including audiology, medicine, nursing, occupational therapy, physical therapy, psychology, rehabilitation engineering, social work, and speech-language pathology. In FY 98, the UHS/IUAP faculty and staff trained 15,055 students and professionals, provided direct services to 3,162 individuals with disabilities, and provided 3,756 hours of technical assistance to 15,260 practitioners.

The UHS/IUAP resources include a wide range of grants and contracts, including statewide systems change initiatives (e.g. the Iowa Program on Assistive Technology funded through the federal Technology Act of 1998). Information dissemination resources include the Iowa COMPASS (Iowa's statewide information and referral service), Infotech (an information and referral service on assistive technology), the Disability Resource Library, and an active web site (http://www.uiowa.edu/uhs).. The UHS/IUAP employs a complement of instructional designers, trainers, editors, graphic artists and media specialists.

4.2 IDE and IDPH

Under the direction of IDE the lead agency for Early ACCESS (IDEA, Part C) will continue to contribute federal funds in Iowa to support the newborn hearing screening child find initiative for the years 2000-2001. During the 2001 legislative session, the cooperating agencies within Early ACCESS and other stakeholder groups will seek state legislation for the newborn hearing screening initiative. This will give the initiative a sustainable home and funding base. IDE will continue to closely with the AEA special education directors, audiology supervisors, audiology staff and service coordinators under Early ACCESS to facilitate their support and active statewide participation in this initiative. The Deaf/Blind Registry under the IDE will also support this initiative.

IDPH will work with Title V local contract agencies to assist with follow up, referral and service coordination activities for these hearing impaired infants and toddlers. The metabolic screening system and vital statistic birth certificate registry system will link with this initiative. IDPH will provide some inkind financial support for printing, postage, surveying of programs and advisory committee meeting expenses. IDPH Early ACCESS staff will provide support and contract management related to the 28E Agreement between IDPH and UHS with Early ACCESS funds for training and technical support to Iowa hospitals and AEA's and for the establishment and maintenance of a statewide data management and tracking system. State staff support from IDPH and Early ACCESS will continue by their technical assistant.

4.3 Agreement between UHS and IDPH

Since October 1, 1997 a contract has existed between UHS and IDPH to provide training and technical assistance to Iowa’s hospitals and AEAs to implement universal newborn hearing screening programs (Appendix G). Funds originate from Part C (IDEA) and Iowa Early ACCESS. For four years Early ACCESS (IDEA, Part C) federal dollars in Iowa have been the sole source of funding for this newborn hearing screening initiative. The 28E Agreement between IDPH and University Hospital School is $50,000 for FFY’99 utilizing Early ACCESS federal funds. These funds have been used to pay 20% FTE to Dr. Lenore Holte, the project director, and 50% FTE to a project assistant, Mary Mcintosh. Funds were also used in the first two years to subcontract with an AEA audiologist to travel the state to provide training. In FFY99 funds were also provided through this agreement for first-year software license costs for the SIMS data management program. In FFY2000 this subcontract no longer exists, but two consulting audiologists, Teresa Linde-Fendrich and Sandie Bass-Ringdahl, will each travel two days per month to provide support to screening hospitals. Both have experience directing newborn hearing screening programs in large urban hospitals.

4.4 Computer Resources

Dr. Holte, Ms. Bass-Ringdahl, and Ms. Mcintosh are housed in the UHS and have sufficient office space and computer capability to perform the activities of the proposed project. Ms. McIntosh also has computer capability to manage a large database using the SIMS (Software Information Management System) software which was recently purchased from the OZ Corporation . IDPH owns this software under the current agreement and has purchased stations for UHS, each of the 15 AEAs, and 41 of the birthing hospitals which account for 86% of Iowa’s births. Ms. Linde-Fendrich is housed at Iowa Methodist Hospital in Des Moines and has sufficient computer capabilities to serve as consultant and traveling quality control expert.

CHAPTER V IDENTIFICATION OF TARGET POPULATION AND SERVICE AVAILABILITY

5.1 Target Population

The primary target population for the proposed screening and follow-up activities is all Iowa newborns. Additional target populations for training and support services are the families of these infants, Iowa audiologists and teachers of the hearing impaired, Iowa pediatricians and family practitioners, the IUAP, the Iowa Council for Early ACCESS, and the Iowa Deaf/Blind Census.

5.2 Needs, Special Problems and Barriers

Because Iowa still has three birth centers with more than 50 births per year that do not screen hearing, this is a barrier that will need to be overcome. In addition, those centers with fewer than 50 births per year will need assistance in developing a plan for screening. Other barriers include the lack of a plan for Iowa’s approximately 250 annual home births and the lack of a plan to follow screening passes who have high risk factors for progressive hearing loss. These are difficult populations to target. Many screeners in the state have a lack of understanding of how to refer to an Early ACCESS service coordinator or a CHSC health service coordinator. Many audiologists in the state feel unprepared to serve very young infants. Cultural barriers exist in serving ethnic minorities, particularly Iowa’s growing Hispanic population. Few professionals are bilingual, few written family educational materials are available in other languages and few professionals understand cultural differences in attitudes toward hearing impairment and medical professionals. Another barrier to serving target populations of the proposed activities is the resistance of many third-party payers to reimburse for newborn hearing screening services as a separate billable service, rather than part of a bundled charge. A related barrier is also the reluctance of most screening programs in Iowa to charge for newborn hearing screening.

5.3 Services and Supports

Fortunately Iowa has an extensive system of services and supports to overcome barriers to full development of a sustainable system of universal newborn hearing screening, follow-up, and entry into early intervention. These have been described more completely in other sections of this application. Each community is located in an AEA, which provides supporting audiologists, supporting teachers of the hearing-impaired, and home-based early intervention for hearing-impaired infants and toddlers. There are at least nine audiologists in private practice or public institutions in the state which provide diagnostic audiological services and hearing aid fitting services to children of all ages. Each community is also close to a CHSC regional clinic and Early ACCESS service coordinators. Two audiologists have recently begun to provide statewide support services under IDPH’s contract with UHS for training and technical assistance; one to the western half of Iowa and one to the eastern half of the state. The state High Risk Infant Follow-Up program, under the direction of Dr. Herman Hein, provides a perinatal review group to visit state perinatal centers on a rotating basis. This group has also supported newborn hearing screening by discussing each center’s program with the pediatricians and nurses they visit.

CHAPTER VI NEEDS ASSESSMENT

6.1 Prior needs assessment

In 1995 the final report of the Iowa Ad Hoc Newborn Hearing Screening Workgroup recommended phasing in universal newborn hearing screening in the state by January 1, 1998. While this goal was not reached by the target date, it has been nearly reached by January 1, 2000. Some recommendations have been carried out completely, some partially, and some not at all. In particular those recommendations regarding tracking infants who do not pass screening, tracking screening passes with high risk factors, and ensuring reimbursement of screening programs, have not been carried out.

The screening data presented in Appendix B show a clear need for more complete hearing screening data reporting and a need for a more accurate system of data management. The current screening referral rate of 4% from the birth admission screen is similar to that published by other states. Compared to the incidence of 2.5 per thousand births with significant hearing impairment, however, this referral rate illustrates the need for tighter quality control of existing screening programs to reduce false positive rates, unnecessary parent anxiety, and unnecessary diagnostic evaluations.

All newborn hearing screening program managers in Iowa were surveyed in December 1999 regarding billing and reimbursement practices. A copy of this questionnaire is provided in Appendix H. Preliminary results, with 52% of screening hospitals responding thus far indicate that only 24% of these programs are billing for newborn hearing screening. Billed amounts range from $10 to $40. The two primary reasons for not billing are that not doing so was a stipulation of an agreement with a community group who donated equipment funds and that families might refuse screening if there is a charge. Several respondents who are not billing requested more information and 42% of those not billing reported they are considering billing in the future. There were no reports of third-party payers refusing to pay for newborn hearing screening, but most reported that these costs are bundled with newborn services so reimbursement does not occur separately for this service. Thus, funds recovered reimbursement are not utilized to sustain the program.

Following the second annual Iowa Early Hearing Detection and Intervention (EHDI) conference in Des Moines in March, 1999, participants identified the following areas as needs for continuing education in their course evaluations; tracking newborn hearing screening test results, frequency-specific ABR evaluations, fitting amplification to infants, counseling families regarding screening results, language stimulation techniques with hearing-impaired infants, and billing and reimbursement practices for newborn hearing screening. Many participants from rural areas also expressed a need for more accessible continuing education, perhaps via the internet or the Iowa Communications Network (ICN).

6.2 Proposed needs assessment

The development of the statewide data management system of newborn hearing screening results will allow constant surveillance of the quality of screening programs. In particular, the project director and database manager will review screening rates, miss rates, and refer rates from all programs on a quarterly basis. These are available from data fields in the SIMS program. From these data they will also monitor any delays between referral and diagnostic audiology evaluation and delays between diagnosis and early intervention, including amplification fitting. Quality control needs will be addressed by consulting audiologists and AEA audiologists.

Needs of professional communities for continuing education will be surveyed through course evaluations after each continuing education opportunity provided during the project period (Appendix I). In addition to asking participants to evaluate a course in which they have just participated, they will be asked about other continuing education needs. The project director meets with AEA hearing team supervisors three times per year and she will also distribute continuing education needs questionnaires at those meetings.

The billing and reimbursement survey presented in Appendix H and distributed in December 1999 will be distributed to all screening programs in each project year in December. Results will be presented annually to the Advisory Committee.

Also, a family satisfaction questionnaire, presented in Appendix J will be distributed annually in May to a random sample of families of Iowa’s newborns.

CHAPTER VII COLLABORATION AND COORDINATION

At the time of this application the administration of the Iowa newborn hearing screening program is being shifted from the office of the Maternal and Child Health Director to the office of the Children with Special Health Care Needs (CSHCN) Director. Direction of the screening program and management of the state database will still occur at UHS. CSHCN headquarters in Iowa are housed in the same building as the UHS and the two institutions have a long history of collaboration, most notably in the Iowa Leadership for Education in Neurodevelopmental Disabilities (ILEND) training grant.

Project staff represent major statewide agencies in Iowa. The Principle Investigator from CHSC will collaborate throughout the project's duration with the project director, who represents IUAP and its resources. Part C resources (originating from IDE) have been used to help create the foundation of the Iowa Newborn Hearing Screening for the past three years. Part C technical assistants representing the IDPH and CHSC will collaborate to direct families to care coordination/services coordination resources located within their home communities, following the second hearing screens which will also occur in or nearby their home communities. Early ACCESS Regional Coordinators will play a key role in helping to publicize the screening program through the interagency representatives at their regional advisory boards. The Principal Investigator, himself an Iowa pediatrician, will provide a link to community pediatricians and family practitioners statewide through his many connections at The University of Iowa and through professional groups. The Maternal and Child Health Council, an advisory council for the State's Title V programs, will be consulted for input regarding appropriate stages of this program. This group includes consumers of maternal and child health services (including services for children with special health care needs) and an array of other public, private, and voluntary organizations concerned with the health and health-related issues of Iowa's children and families.

The Early ACCESS signatory agencies will continue to collaborate and coordinate their efforts related to the child find activity of newborn hearing screening. Through the establishment of a newborn hearing advisory committee, other professional organizations and agencies will be involved formerly with this system. Refer to Appendix D for letters of support from the agencies, organizations, key public and private providers, consumer groups, and others who have previously supported this initiative and have been asked to again support the system.

The Association of Iowa Hospitals and Health Systems will work with all Iowa hospitals to support their continued involvement in this system. Training and technical assistance will be provided by two quality assurance experts to hospitals, Area Education Agency audiology staff and private audiologists.

The Iowa Council for Early ACCESS, a federal required advisory council for IDEA, Part C, has a parent member who has a child with a hearing impairment. He will be asked to assist with this project through the state Iowa Council for Early ACCESS and to serve on the new state Newborn Hearing Advisory Committee.

The Insurance Commissioner has already indicated support of this activity and will assist in gaining support for payment of the hearing screening, re-screen, follow-up and referral activities as billable activities. Very recent conversations with Iowa’s Medicaid program indicate that new rules are being written which will establish a provider type for the current Part C infant and toddler program. This will allow current and new providers to bill Medicaid for the services provided under this program. Medicaid is a primary payer for this program under federal regulation. The language in these new rules includes payment for services provided by aduiologists, speech-language therapists who are licensed under the Iowa code for audiology services.

CHAPTER VIII GOALS AND OBJECTIVES

8.1 Goal 1: To provide newborn hearing screening services to all of Iowa's children and to develop a system to ensure early diagnosis of infant hearing loss

8.1.1 Establish newborn hearing screening programs in all hospitals with over 50 births per year

8.1.2 Develop a plan for screening babies born in hospitals with fewer than 50 births per year

8.1.3 Develop a plan for screening Iowa's babies born at home

8.1.4 Develop a plan to monitor those infants who pass newborn hearing screening, but have high risk factors for progressive hearing loss

8.1.5 Standardize parent consent forms and informational materials used by hospitals

8.1.6 Standardize screening protocols

8.1.7 Develop a plan to screen babies who move into Iowa in the first six months of life

8.2 Goal 2: To develop a system of data management for newborn hearing screening results to obtain accurate state data regarding screening results, diagnostic follow-up, tracking, entry into early intervention, and linkage to a medical home

8.2.1 Train Early Access staff regarding procedures for linkage to a medical home

8.2.2 Train and assist Child Health Specialty Clinics (CHSC) regional staff to help with entry into early intervention

8.2.3 Link families to family support programs though Early ACCESS Regional coordinators

8.2.4 Provide newborn hearing screening data management software to hospitals and AEAs to track newborn hearing screening results on individual babies and to calculate quality control indicators for screening programs

8.2.5 Develop a state database to monitor the progress of newborn hearing screening in the state, to provide statewide quality control indicators

8.2.6 Compare state database of newborn hearing screening results during the birth admission to the Electronic Birth Certificate (EBC) and report this information to the Maternal and Child Health Bureau for the Title V performance measure on newborn hearing screening rate

8.2.7 Publish state data on progress in lowering the age at which infant hearing impairment is diagnosed and the age at which intervention commences

8.3 Goal 3: To develop a sustainable system of newborn hearing screening, follow-up, referral, and tracking activities beyond the project period

8.3.1 Work toward full reimbursement of health care providers for newborn hearing screening billed as a separate charge by all third-party payors

8.3.2 Work with Medicaid to make newborn hearing screening unbundled with newborn services

8.3.3 Assess the need for and feasibility of state legislation to mandate universal newborn hearing screening, tracking, intervention, and evaluation

8.4 Goal 4: To increase public awareness of the importance of good hearing to speech and language development and to increase public awareness of Iowa’s newborn hearing screening program.

8.4.1 Distribute newborn hearing screening informational brochure to all expectant parents through the Early ACCESS newborn packet

8.4.2 Provide information to AEAs for child-find fairs

8.4.3 Provide ongoing support to the Perinatal Review team

8.4.4 Develop parent education materials on Iowa’s Newborn hearing screening website

8.4.5 Educate physicians and nurses through Pediatric Grand Rounds at the University of Iowa Hospitals and Clinics, the annual Iowa Perinatal Conference, the annual Parent-Educator Connection Conference, and the annual Iowa Maternal and Child Health Conference

8.5 Goal 5: To provide Iowa's audiologists with the skills needed to serve infants with hearing loss

8.5.1 Provide continuing education to audiologists regarding pediatric diagnostic audiological methods through workshops in meetings and via the Iowa Communications Network (ICN)

8.5.2 Provide continuing education to audiologists regarding pediatric amplification-fitting methods through workshops in meetings of the Iowa Speech and Hearing Association and via the ICN

8.5.3 Provide continuing education to audiologists and teachers of the hearing-impaired regarding early intervention techniques with hearing-impaired infants and families through workshops in meetings of the Iowa Speech and Hearing Association and via the ICN

8.5.4 Develop informational materials for professionals on Iowa's newborn hearing screening website

8.5.5 Coordinate with the graduate training program in audiology at the University of Iowa to provide graduate students with experiences in all aspects of managing newborn hearing screening programs

8.5.6 Participate in educational programs provided by the Category B grantee of this MCHB program

8.6 Goal 6: To coordinate results of and information from newborn hearing screening identification system to other applicable state data systems

Coordinate with genetic and metabolic screening, the deaf/blind census, the birth defects registry, and the perinatal review committee.

8.7 Goal 7: To convene a state Newborn Hearing Screening Advisory Committee whose members will commit to a four-year term to provide direction to project personnel in accomplishing goals 1 through 6.

8.7.1 Identify potential committee members, inviting them to participate, and holding quarterly meetings

8.7.2 Hold initial meeting and quarterly meetings annually

8.7.3 Develop and implement recommendations based on issues as indicated for Advisory Committee input in goals and objectives for this project

CHAPTER IX REQUIRED RESOURCES

The following additional resources will be required for successful completion of the proposed project activities:

Funding is requested for the annual software license fee for use of SIMS software is requested in years two through four. Year one is currently covered by Part C, IDEA funds. Funding is also requested for 50% salary support for the project assistant to maintain state database, to help coordinate continuing education opportunities, to coordinate Advisory Committee meetings, and to assist other personnel with other appropriate activities. Her total contribution to the project along with current Part C funds will be 100% of her time. Funds are also requested for 25% salary support (20% in year four) for the project director , bringing her total time contribution with Part C funds and UHS in-kind contributions up to 50%. Funds are also requested for two consultants to travel and communicate with screening programs two days per month each to enhance quality control activities and training. The total contribution with Part C funds will be four days per month for each consultant.

Because data from hearing screening results obtained prior to 1999 are recorded on HITRACK software (developed by the National Center for Hearing Assessment and Management at Utah State University) on many of Iowa's babies, funding is requested to pay a programmer from the OZ Corporation to write software to allow these old HITRACK files to be converted to files that can be read by the SIMS program.

As stipulated by MCHB in the grant application instruction packet, funding is requested for one annual trip to Washington D.C. for the project director and Early ACCESS technical assistant. In addition, funds are requested for the project director to purchase a notebook computer for working on the project during professional travel. Also requested are the costs of food and a meeting room for four annual Newborn Hearing Screening Advisory Committee Meetings in Des Moines and the cost of 2 ICN meetings per year for continuing education. For family awareness the cost of printing 40,000 parent brochures per year is requested, as are the costs of designing and maintaining an Iowa Newborn Hearing Screening Website and a thirty-second TV Public Service Announcement. Finally, funds are requested for supplies, postage, telephone calls, photocopying, and computer maintenance fees to support project activities.

CHAPTER X PROJECT METHODOLOGY

10.1 Attaining universal screening and early diagnosis of all infant hearing loss

Job descriptions and biosketches of key project personnel are provided in Appendix K. The Project Activities Time Allocation Table and the Personnel Allocation Chart are included with this chapter. While universal hearing screening is occurring in hospitals in Iowa that account for 96% of births in the state, there are a few hospitals left which do not have screening programs. Emphasis will be placed on acquisition of equipment and training of obstetrical nurse screeners in hospitals with more than 50 births per year. One large hospital not has recently purchased screening equipment and training is scheduled to begin soon through the equipment vendor and AEA audiologists in the area. Another hospital not yet screening has an equipment purchase budgeted in this fiscal year and plans to make the purchase in April, 2000. Training will be coordinated with the local AEA and with quality control audiologists working with the UAP. Three hospitals with more than 50 births per year will then remain with no newborn hearing screening program. Screening programs do exist in other birthing hospitals in these areas and they are coordinated by local AEA audiologists. Obstetrical personnel from these three hospitals will be approached by UAP quality control audiologists to provide training on the importance of newborn hearing screening and negotiations with a regional equipment vendor will be initiated to try to obtain a discount group purchase for screening equipment for these three sites.

Some birthing centers with less than 50 births per year have initiated their own screening programs, largely with the assistance of a small equipment grant program in the summer of 1998. Because little practice on the part of screeners can result in high false positive rates from hearing screening and because equipment expenditure may be unrealistic for these smaller hospitals, provision will be made for screeners to travel to small hospitals in their areas to screen babies. Possible staffing solutions include nearby screeners from larger hospitals or AEA audiometrists.

Following the formation of a state Newborn Hearing Screening Advisory Committee, a plan will be developed for screening Iowa's babies born at home. There were 283 home births in Iowa in 1998. Regional care coordinators from the Child Health Specialty Clinics will link with local pediatricians and family practitioners to offer hearing screening services through follow-up and will assist in referring the family to a local audiologist and local screening hospital prior to 4 weeks of age.

Although newborn hearing screening is highly sensitive to all congenital hearing loss, certain risk factors are associated with normal hearing at birth and progressive hearing loss that develops in the first few years of life. New data management software recently being implemented allows for continued monitoring of children with such high risk factors, such as congenital cytomegalovirus, early exposure to ototoxic medications, and family history of childhood hearing loss. These children will often pass a newborn hearing screen, but hearing loss may develop before parents begin to notice a delay in acquisition of speech and language. Educational materials provided to parents will address these concerns. Parents of children logged into the state data management system as passing the screen but having one or more of these risk factors will be notified in their letters regarding screening results that the child has a high risk factor for progressive hearing loss and should return to the AEA audiology service at six-month intervals for a rescreen.

10.2 Development of a state data management system

As outlined in section 2.3 above, current available data regarding newborn hearing screening results come from a variety of sources and data are only available on a state level regarding screening results during birth admission. No aggregate data are available in a systematic form on the success with which children referred from newborn hearing screening receive diagnostic audiologic evaluations. There are also no data available on how many of these are diagnosed as hearing-impaired or the age at which diagnosis occurs. Data are not available on the age at which amplification is fit to Iowa's hearing-impaired infants or the ages at which they enter early intervention. A major goal of the proposed project will be to provide a framework within which these data can be reported. Several hospitals and AEAs have previously used the HITRACK software for data management, but feedback from most users was not positive. Recently the SIMS software, marketed by the OZ Corporation of Texas, was acquired with Part C (IDEA) funds through IDPH. Systems were acquired for one state-level system, the fifteen AEAs and 41 hospitals that account for 86% of births in Iowa. Training is currently underway for AEA audiologists and hospital personnel who wish to use this software. The agreement with OZ corporation includes payment of annual software licensing fees. Smaller birth centers use a paper-and-pencil data mangement system and entry of data into SIMS is provided at the AEA level. One of the major resources required for the proposed project is funds for these licensing fees until a sustainable system is in place.

Under the state system of newborn hearing screening data management and tracking, data will flow from hospitals to AEAs to the state system on a monthly basis. The software will allow tracking of number of newborns screened, number rescreened, number passed, number referred for audiologist evaluation, number who receive audiological evaluation and at what ages, and number who receive early intervention and at what ages. Also available will be important quality control indicators such as screening rate, miss rate, and false positive rate. Tracking will also be available to follow children who pass the screen who have high-risk factors for progressive hearing loss. Data will also be provided to the national database on Early Hearing Detection and Intervention (EHDI) Centers for Disease Control (CDC) in Atlanta GA and to the Title V Newborn Hearing Screening Performance Measure. . Hospitals will also have the ability to send their data directly to the state system for assistance. A hospital may choose to link directly to both AEA’s and the state system.

The birth certificate registry and electronic birth certificate under IDPH's vital records bureau have added fields related to newborn hearing screening on the birth certificate. This will allow the state wide data management and tracking system to cross reference their data with vital records in the aggregate on a quarterly basis. This will aid the entire system related to quality assurance issues and most importantly help in reaching at home births, transient births and those that might slip through the "cracks" of the health care system.

One of the most important uses of the state data management system will be to monitor screening program quality. While it is recognized that some false positives are necessary in a screening program to ensure program sensitivity to the condition being screened for, newborn hearing screening programs have been characterized by far too many false positives. This is especially true of programs which rely on OAEs, rather than AABR. Iowa's newborn hearing screening programs vary in technology used. The overall state referral rate from reporting hospitals is currently 4%. Given current best estimates from other states of the prevalence of congenital hearing loss of 0.25%, this referral rate represents a high rate of false positives. Data will be used to monitor this rate during attempts at training and retraining screeners. Training and retraining will be targeted at those programs with high refer rates. This will be conducted by AEA audiologists who have been trained as screening trainers and two audiologists who travel from the University Hospital School.

10.3 Development of a sustainable system

Currently a variety of billing arrangements for newborn hearing screening are being practiced in Iowa. Most programs are not billing at all. Billed amounts range from $10 to $40. Cost for newborn hearing screening is sometimes bundled with newborn care and sometimes billed as a separate charge. Reimbursement is also inconsistent. Medicaid of Iowa consistently reimburses for newborn hearing screening as do a few private insurers., but only as a bundled charge. Beginning in the year 2000, quality control audiologists from UHS will discuss billing issues during their visits to hospitals to train screeners and to provide quality control. All screening hospitals will be encouraged to bill. During the proposed project, meetings will be held with the Insurance Commission of Iowa to promote reimbursement for newborn hearing screening. In addition, representatives of the insurance industry and the Iowa Hospital and Health System Association will be invited to join the Newborn Hearing Screening Advisory Committee.

Iowa is unique in the nation because of its tremendous progress in newborn hearing screening in the absence of a legislative mandate. Legislation may be critical to continued success of the program and to move into new phases of the program regarding follow-up. During the proposed project one of the major tasks of the Iowa Newborn Hearing Screening Advisory Committee will be to assess the need for and feasibility of state legislation to mandate universal newborn hearing screening, tracking, and intervention and reimbursement for costs of the program that are not reimbursable. Nonreimbursabed costs may include salary contributions for project personnel to manage the state database of screening results, costs to convene the Newborn Hearing Screening Advisory Committee, and costs to provide quality control activities. One possible aspect of this goal will be to include a state appropriation for these activities. Model legislation will be used which is available on the American Speech-Language-Hearing Association (ASHA) website (www.ASHA.org).

10.4 Public awareness campaign

Recently a parent brochure was developed at UHS with Part C IDEA funds to be distributed in all prenatal packages in Iowa. The first printing will occur in January 2000 and 40,000 of these brochures will be included in this printing. For the proposed project, funds are requested for additional printings in the each of the project years. In the first year of the project the text will also be translated into Spanish.

Funds are also requested to further develop Iowa’s Newborn Hearing Screening website, now at http://207.28.33.2/swp/tadkins/inac/inac.html

This site needs to be revised and updated. Resources at UHS will be utilized to create a new website. One area of the site will be dedicated to information for families and another will be dedicated to information for professionals.

10.5 Continuing education for audiologists and teachers of the hearing impaired

Since the inception of newborn hearing screening in Iowa clinical and educational audiologists in the state have consistently expressed a need for updated training in pediatric diagnostic techniques and in pediatric, especially infant, hearing aid fitting. This proposal requests funding for continuing education to audiologists through a workshop at annual meetings of the Iowa Speech and Hearing Association and one workshop per year via the Iowa Communications Network (ICN) a video meeting facility. This unique resource for professional meetings, education, and telehealth has already been itulized by the AEAs and others involved in newborn hearing screening for meetings and workshops. At least one ICN studio exists in each AEA. Most large hospitals and colleges in Iowa also have studios. In addition newborn hearing screening workshops will be added to the agenda of the Iowa Speech and Hearing Association annual meeting in October of each year. Topics for training will include pediatric diagnostic audiology, with frequency-specific auditory brainstem response testing and otoacoustic emissions, and pediatric hearing-aid fitting, including real-ear measures. Funding is also requested for one ICN meeting per year to provide updated training to audiologists and teachers of the hearing-impaired regarding early intervention techniques with hearing-impaired infants and families and counseling of families with hearing-impaired infants.

10.6 Coordination with other state services

One of the major purposes of the data management system will be to coordinate newborn hearing screening results with other state registries and systems for Iowa’s children with hearing impairment. Because a large proportion of children with congenital hearing impairment will ultimately be diagnosed with vision impairment as well coordination with the state deaf/blind census will be utilized to streamline early access into intervention services for children with dual sensory impairment. A letter of support from the state coordinator for deaf/blind services in included in Appendix D. Funds will be used to educate screeners and audiologists about the relationships between hearing and vision impairment in infants and to provide audiologists with necessary forms and information to refer children diagnosed with early-onset hearing loss to the Deaf/Blind Census.

10.7 Iowa Newborn Hearing Screening Advisory Committee

During the project period the project director will form a Newborn Hearing Screening Advisory Committee to provide direction to project personnel in accomplishing goals 1 through 6. This group will meet in face-to-face meetings four times in each project year and will consist of the following members:

a. A representative of IDPH to serve as co-chair

b. A parent who had a child participate in the referral process of newborn hearing screening

c. A representative of the Bureau of Special Education, IDE

d. A primary care provider from the Iowa Academy of Family Physicians

e. A representative from the Iowa Chapter of the American Academy of Pediatrics

f. A representative from the Iowa Academy of Otolaryngology

h. A representative of the division of IDPH relating to epidemiology and data collection

i.A representative of the Association of Iowa Hospitals and Health Systems

j. Early ACCESS technical assistant

k. A representative of the Iowa Speech-Language-Hearing Association

l. An AEA special education director

m. An AEA audiology supervisor

n. An audiologist in private practice, who provides diagnostic services to infants

o. A representative of the Iowa Nurses Association

p. A representative of the Health Insurance Industry

q. A representative of Iowa's Deaf Services Commission

r. A representative of the Iowa School for the Deaf

s. A teacher of the hearing-impaired working with infants

t. Project director

u. Director of Child Health Specialty Clinics

A project activities time allocation table and a personnel allocation chart follow.

CHAPTER XI PLAN FOR EVALUATION

11.1 Project efficiency and effectiveness

The addition of newborn hearing screening fields in the EBC will serve as a check for accuracy in the aggregate data in the newborn hearing screening data management system regarding status of screening programs during birth admissions. It should be recognized that data in the state newborn hearing screening data management system will go beyond that gathered during the birth admission. Recently purchased data management software will allow for quarterly evaluation of program quality indicators, for the entire state and for individual screening programs. Indicators evaluated will include the following measures from aggregate data; screening rate, miss rate, refusal rate, refer rate, proportion of misses returning for outpatient screening, proportion of screening refers returning for diagnostic testing, number of infants identified as hearing-impaired and at what ages, severity of identified hearing losses, number of infants receiving hearing aids and at what ages, number of infants entering early intervention and at what ages, number of screening passes with high risk factors for progressive hearing loss, number of these high-risk infants receiving audiological monitoring. Another cross-check on accuracy of data will be a comparison of the number of infants identified as hearing-impaired in the state newborn hearing screening data system and those reported in the Early Access State Database (the Information Management System) as receiving intervention for the hearing-impaired. The billing survey in Appendix H will also be distributed annual to evaluate project activities to enhance billing and reimbursement practices.

11.2 Project Impact

On an annual basis the impact of public awareness activities on Iowa's families will be monitored by evaluating the number of families refusing newborn hearing screening and by evaluating visits to the consumer education portion of the Iowa newborn hearing screening website. In addition, the family satisfaction questionnaire will be distributed to a random sample of parents of Iowa newborns each May (Appendix J).

Also, the impact of continuing professional education will be monitored through the use of course evaluations after each continuing education activity. Included in these course evaluations will be an instrument to monitor the comfort level of Iowa's audiologists and teachers of the hearing-impaired in serving a population of infants and toddlers(Appendix I).

To study the overall impact of all program components over the project period, the feasibility of measuring the receptive and expressive language abilities of Iowa's hearing-impaired four-year-olds on an annual basis will be considered in the first year of the project. Using preschoolers from a few of Iowa's AEAs, the Language Development Scale from the SKI-HI program will be administered to hearing-impaired four-year-olds in the Fall of each project year. Four-year-olds in the Fall of 2000 were born in 1996, when few Iowa hospitals had newborn hearing screening in place and methods for entry into early intervention were not well-developed. Those born in 1999, when screening programs were finally in place for hospitals responsible for 96% of Iowa births, will turn four in 2003, the last year of the project. If the project has had the anticipated impact, we expect a steady increase in the receptive and expressive language abilities of Iowa's hearing-impaired four-year-olds during the course of the project. By the end of the project several of these children should have performance close to that of their normal-hearing peers.