Wyoming CDC EHDI Grant (2001)

GRANT ABSTRACT

Cooperative Agreement for Early Hearing Detection and Intervention (EHDI) Tracking, Research and Integration Project

Level I Application

This application was a joint effort of the Wyoming Department of Health, Developmental Disabilities Division - the lead agency for Part C, Community and Family Health Division - The Maternal and Child Health agency, University of Wyoming, Wyoming Institute for Disabilities - Wyoming's UAP, and the Developmental Preschool and Day Care - the agency presently responsible for the newborn hearing screening program.

GRANT NARRATIVE

Understanding the Problem and Current Status

Wyoming is a large, frontier state in the western part of the United States with an estimated population of 494,000 scattered across 98,000 square miles, or about five people per square mile. The state's birth rate has remained steady at about 5,800 births per year. There are 22 birthing hospitals including two situated on Wind River Indian Reservation.

Given the serious ramification of late identification of hearing loss, it is important to perform newborn hearing screening and make diagnostic referrals as soon as possible. Universal Newborn Hearing Screening has allowed identification of children with hearing impairments to occur at a young age. The importance of early intervention for this target population is well established. The recognition of the need for special training for children who are deaf is centuries old (Calderon & Greenberg, 1997), but the urgency to identify and treat children with hearing impairments is of more recent origins. It is estimated that 24,000 infants are born each year with hearing impairments, most of whom do not have their hearing loss identified until 2.5 years of age (Tait, 1997). The March of Dimes refers to hearing loss as the most prevalent birth defect. Research by Yoshinaga-Itano (1995), Yoshinaga-Itano & Apuzzo (1995) and Yoshinaga-Itano et al. (1996) demonstrates significant differences in language acquisition among children with hearing impairments who were identified at less than six months of age to those identified at a later age. Research indicates that if intervention is started prior to six months of age, the child with a hearing loss is likely to have near normal language development. The window of opportunity to produce near normal language development, and all that language development implies for cognitive, social, and emotional development and academic success, for children with hearing impairments starts closing after six months of age.

In the last several years, national consensus statements and guidelines have been developed advocating universal newborn hearing screening (UNHS) (NIL 1993; Joint Committee on Infant Hearing, 2000; American Academy of Pediatrics, 1999; Healthy People 2010 Objectives, 1999). Screening based on risk characteristics only identifies approximately 50% of the infants and young children with hearing loss. The remaining 50% of infants and young children with hearing loss have no known risk factors. Late identification of hearing loss is a serious public health issue.

In 1993, Wyoming's Department of Education and the Department of Health evaluated the educational outcomes for children who were deaf or hard of hearing. As a result, in 1994 the state embarked upon a model UNHS program at the United Medical Center located in Cheyenne, Wyoming. An advisory board of stakeholders was developed for the purpose of providing realistic insight into appropriate protocols for implementation, data management, and early intervention.. Involving a wide variety of key players from state agencies, the medical and educational communities as well as consumers allowed Wyoming to develop a coordinated system to ensure quality components at all levels of the program. Because the model program proved to be successful, the project was expanded to include the 22 birthing hospitals in Wyoming. Several advantages were demonstrated as a result of bringing the hospitals into the program in an organized fashion. Natus Algo II equipment was purchased for all hospitals using Part C funds which allowed consistency in screening training, follow-up procedures and data reporting process.

As reflected by the flow-chart (See Attachment 4), medical home involvement is central to the follow-up process in Wyoming. Information regarding failed initial or second screening is directed to the medical home by hospital nursery star: Data forwarded monthly to the Project Director as subcontractor of the Department of Health-Developmental Disabilities Division are reviewed for failed screenings. State-level staff facilitates medical home personnel, public health nurses and hospital staff follow-up with families of children with failed screens. This support has been critical in completing the screening, diagnosis and enrollment prior to the critical six month time frame.

Legislation mandating newborn hearing screening for Wyoming's youngest citizens was passed with overwhelming support by the Wyoming State Senate and the Wyoming House of Representatives in early 1999. Senate Enrolled Act Number 9 took effect on April 1, 1999. Since 1998, Wyoming has consistently maintained or exceeded at least 85% compliance level with newborn hearing screening, but successful as the hearing screening project has been, it does not link to either birth records, the inborn errors of metabolism screening, nor the recently initiated early childhood vision screening systems.

The early childhood vision screening system represents the easiest linkage because the vision screening was started as a model project by the same agency that presently staffs the hearing screening system. Metabolic screening presents a greater challenge because the Department of Health receives aggregate data (number screened, number missed and why) from the hospitals; the confirmation of disease comes from various physicians offices and laboratories, some of which are out of state. Metabolic screening does not link to birth records.

Project Purpose

This application is submitted by the Wyoming Department of Health in response to the Centers for Disease Control Program Announcement 01048, Cooperative Agreement for Early Hearing Detection and Intervention (EHDI) Tracking, Research, and Integration. Wyoming is applying as a Level 1 state to refine and improve its existing Universal Newborn Hearing Screening (UNHS) Program.

The purpose of this proposal is to enhance Wyoming's EHDI data tracking by linking to electronic birth certificates for those hospitals with that capability, gathering data about the types of hearing loss and intervention efforts. Additionally Wyoming will coordinate the newborn hearing screening results with the recently launched early childhood (12 - 60 months) vision screening system and the Department of Health and existing metabolic screening system. Our vision is to provide a

comprehensive, coordinated approach to the identification of newborns and infants with potentially preventable or remediable disabilities, to track infants referred for services to reduce loss to follow up, to develop a reporting system, and gather standardized data on infants with hearing loss, including those with late onset or progressive hearing loss.

Additionally, we expect to connect with the University of Wyoming, Center for Rural Health Research and Education (CRHRE, pronounced "share"), which represents a dynamic research development partnership between the University of Wyoming (UW) and the Wyoming Department of Health. The CRHRE has recently applied for a Agency for Health Research and Quality (AHRQ), Building Research Infrastructure and Capacity (BRIC) Grant to augment the College of Health Science's research capability and to incorporate health data into Wyoming's geographical information system. Cooperation with the CRHRE will facilitate epidemiological related research.

Need for Assistance

Beginning in 1994, the Wyoming Newborn Hearing Screening Project was funded by the Wyoming Early Intervention Council, Wyoming's Interagency Coordinating Council under Part C of the Individuals with Disabilities Education Act (IDEA). Between 1994 and 1998 the Early Intervention Council committed substantial resources to the initial purchase of equipment and training of staff in Wyoming's birthing hospitals and continues to fund a part time Project Director and part time Data Management Specialist. The Council also funded the purchase of FM systems for the classrooms in the developmental preschool centers for young children with hearing loss. The Council is satisfied that the reporting system is accomplishing the objectives of universal newborn hearing screening, meeting its obligations under IDEA to identify children in need of services, and providing adequate reporting of the results of the newborn screening. While the Council agrees that the system would benefit from further development, especially in the areas supported by this application for a cooperative agreement, it does not have funds that it can commit to further development of the system. The discussion below will present a more detailed picture of the present system.

The data collected by Wyoming's Newborn Hearing Screening (NHS) Program provides consistent indicators for monitoring and managing the hearing screening system, but are not functional for epidemiological research. The Individual with Disabilities Education Act charges the Department of Education with the location and identification of children with disabilities, including hearing loss, and the Early Intervention Council is charged with developing a coordinated system of care to address the needs of infants or toddlers with disabilities and their families. The Department of Health, Developmental Disabilities Division has an interest in the location of children with disabilities, including those with identified hearing loss, but only to the extent of delivering services to these children. After these children enter the school system at age five, the commitment to delivery of services shifts to the Department of Education and the actual location of a child with a hearing loss has no further value. The Developmental Disabilities Division and the Department of Education have management interests in the children, not historical nor epidemiological. Infants with hearing loss are of interest as long as they require services within the respective authorities of these agencies, but not beyond that. Given this, assistance to develop a system to track the locations of infants identified with hearing loss and those with later onset or progressive hearing loss must come from other sources. This application will enable Wyoming to develop the necessary linkages to gather these data.

Demographic Data

The target population of Wyoming Newborn Hearing Screening is all newborns in the state. This includes those infants born on the Wind River Indian Reservation and those infants born at home. Wyoming has a large Mennonite population in the southeast corner of the state who frequently have their infants at home. Home births account for approximately 48 births a year. As those infants are brought to their medical homes for well baby checks or newborn infant screenings, the hearing screening will be conducted with infants who have permission to do so. The birth rate in the state of Wyoming has been constant at approximately 5,800 births per year for the last five years.

As indicated above, Wyoming has attained and maintained screening of at least 85% of. newborns. More specifically, in 2000 Universal Newborn Hearing Screening Project reported 5771 live births, 5570 (97%) of whom were screened. Of the number screened, 5454 (98%) passed the first screening, 116 (2%) failed the initial screening. Of the 185 that were not screened, the existing tracking system notes five categories - 7 (4%) discharged early, 77 (42%) transferred, 7 (4%) died, 71 (38%) waived the screening, and 23 (12%) reported other reasons for not screening such as equipment not working, supplies not available, etc..

Among the 116 newborns who failed the screening, 79 (68%) passed the second screening, 26 (22%) did not show up for the screening, and 1 (1%) was lost to follow up before the second screening, and 10 (9%) were referred for diagnostic evaluations. Of these 10, four passed the diagnostic evaluation, two evaluations are still pending, and one was lost to follow up before the diagnostic evaluation. The Wyoming Newborn Hearing Screening Program identified 3 newborns with confirmed hearing loss during 2000, bringing to 23 the number of children identified. These were referred for and are receiving intervention; the existing system does not track the type of intervention the child receives. Wyoming's newborn hearing screening program does not presently track or identify children with later onset or progressive hearing loss. .

Until children receive diagnostic evaluations, Wyoming has little information about them. Presently, we have no demographic information on the families of newborns who waive the screening or do not show up for second screening, nor do we know anything about those who were not screened because of equipment failure, shortage of supplies, or other reasons not related to parental choice. The reporting system provides general indicators of success, but little that would suggest a means for increasing the percentage of families participating in newborn hearing screening and certainly it provides no researchable information. What Wyoming gets is basic information. Simply stated, 97% of 5771 newborns were screened, 3% (185) were not screened, and 23% of the 116 who failed the initial screening were lost to follow up.

While the data system has allowed the Project Director to remain reasonably informed about the status of the Wyoming Newborn Hearing Screening system, it has obvious limitations. The present data system does not connect to the electronic birth records, the newly developed early childhood vision system, nor to the newborn metabolic screening results. The reporting depends upon human labor, with all of its potential for error. The system does not allow for ready identification of clusters of infants with hearing loss. However, the system does meet the minimum reporting requirements for the Early Intervention Council, which as indicated above funds present efforts. The existing system is good, but not good enough. While basic it has a distance to go to become valuable for research.

Wyoming's Data Management System

The data that Wyoming gets represents a significant collaborative effort on the part of hospitals and Wyoming Newborn Hearing Screening Program staff. How Wyoming gets that data is indicative of the need for assistance. The first line of the written protocol for the data system states "When you have received the majority of the hospital data, go to Nancy's (Project Director) house and use her computer to ...." The data are entered, hard copies printed and cross checked, feedback to each hospital is generated from the hard copy, tracking of children is also based upon the hard copy, etc. Data are organized monthly, tracking of children who fail a screening in one month requires access to data from the prior month. Additionally, if children fail a screening and are rescreened in the same month, the monthly data report will not reflect a failure of the initial screening, because the outcome was a pass (even though on the second screening). You get the picture. Wyoming has some very dedicated people tracking the results of newborn hearing screening, but in the age of computers data should be entered only once, then transferred, merged, manipulated, analyzed, and reported, but never hand tallied again. The system should readily track a second screening, allow entry of diagnostic data, including the location and name of the audiologist conducting the evaluation, and the developmental center responsible for providing the intervention. Additionally, and perhaps most importantly, it should be routinely backed up.

We should stress that the data process for the Wyoming Newborn Hearing Screening Program works, but focuses energy on data manipulation, visual tracking via highlighting of cases pending, and frequent reviews of previous month's data instead of managing the caseload of children who fail the screening and reducing the number lost to follow up. In a computer age there are better uses of staff time than manually reviewing lists of newborns screened, highlighting referrals, and generating new lists of children for follow-up. All of this and more could be accomplished with an efficient electronic system, one that is linked to electronic birth records and the results of metabolic screening and, when the child is old enough, to the vision screening reporting system.

Finally, assistance will be needed to accomplish two important tasks 1) connect the data gathered from the newborn hearing screening program, from the diagnosticians and early intervention programs to the geographic information system at the University of Wyoming and 2) reduce the number of infants lost to follow up.

1. Define Early Hearing Detection and Intervention system needs.

As indicated above, the existing data system is labor intensive. It is not linked with the electronic birth certificates, nor to newborn metabolic screening. Additionally, while the Project Director reports to the Wyoming Newborn Hearing Screening Committee, the Department of Health does not staff. the system. In order to move past the present system, Wyoming needs to redefine the system. To begin that process, we propose a thorough review of the present reporting system and determination of the long term needs of the Department of Health. This will entail:

a. Addressing the legal issues.

Wyoming statutes limit the ability of the Department of Health to share individual data outside the Department, but the Department of Health, Office of Vital Records has the complete birth records for the state. The Newborn Hearing Screening Program is primarily hospital-based and may not include the 50 or so annual home births. While the Department of Health has not determined the administrative location for the Early Hearing Detection and Intervention system, it will need to determine the legal limitations of having a subcontractor link to the electronic birth records and metabolic screening data and how abstracted data can be shared with the CRHRE.

b. Evaluating potential software packages.

As Wyoming develops a computer-based version of its Early Hearing Detection and Intervention system, the capability of the system and potential for connecting the partners in the newborn . hearing screening system must be evaluated. Presently, Wyoming is evaluating Colorado's system, but other options will also be considered, especially with the intention of linking to the CRHRE for research.

c. Establishing a permanent archive.

The present paper system has proven reasonably durable with good reporting to Wyoming's birthing hospitals, but as Wyoming moves to an electronic system, permanent backup is necessary. The Department of Health has the capability, as does the University of Wyoming, home to the CRHRE, to provide a permanent archive.

d. Determining the administrative structure.

Presently, the Wyoming Newborn Hearing Screening Program is handled via contract with a developmental center which is a local Part C (infant and toddler) and Section 619 (three to five year olds with disabilities) services provider. This is not an unusual arrangement. in Wyoming, local developmental centers often develop model projects that the state eventually incorporates. The same developmental center, in cooperation with the University of Wyoming, has developed an early childhood vision screening project. Because of the issues identified above, the Department of Health will need to make a determination about a permanent arrangement. Given the Wyoming Legislature's resistance to adding state employees, continuing. a contractual relationship may be the best alternative. This needs to be evaluated in light of the expanded responsibilities and capability anticipated by this request for support.

2. Populate the Database

While the existing newborn hearing screening system has successfully identified infants with hearing loss since its inception in 1994, the data are not complete. Each year families waive screening, children fail initial screening and do not show up for a second screening, and children are born at home. Additionally, some hearing loss is not detectable at birth, some is progressive, and some occurs later. To determine the efficacy of the system, Wyoming needs a mechanism to close the data gap. For this we propose:

a. Matching existing hearing screening data to all birth records for the previous 7 years, the date at which the newborn hearing screening system was started. To the extent possible, we are interested in completing the data record for children the system missed or whose hearing loss has been identified after initial screening.

b. Identify all preschool aged children with hearing loss being served by Wyoming's system of providers for infants and toddlers developmental preschool and Head Start services. With less than 5,000 children presently receiving services in the two systems, we have a manageable task to determine how well Wyoming's hearing screening system is identifying children.

c. Establish a mechanism to identify children with later onset or progressive hearing loss. In Wyoming services to children with disabilities between birth and six years of age are the responsibility of Department of Health. Data about these children should be readily available. At age 6, or age 5 if the parents enroll the child in school, the responsibility for special education and related services under the Individuals with Disabilities Education Act (IDEA) shifts to the Department of Education and the local school districts. As children born since the initiation of the newborn hearing screening system enter the education system, we will develop a cooperative relationship with the Department of Education and the local school districts to gather data about children with a hearing loss identified after early childhood.

3. Revise Hospital Reporting Protocol

The existing system is based upon manual cross checking of data submitted. It is a functional system which allows each birthing hospital to extract from its database those elements required for newborn hearing screening reports or to submit the same data elements using paper forms as the hospital decides. The proposed system will be electronic, linked with the Vital Records electronic birth certificates. To get to the point of populating the database with birth records, it may be necessary to revise the reporting protocol. We have two alternatives here. We can have each hospital that submits birth data electronically, and not all do, revise its data entry screens to accommodate the hearing screening results or revise its reporting protocol to include a unique identifier that will allow later connection between hearing screening results and birth certificates. Here is what we propose

a. Review each of the 22 birthing hospital's data submission preferences and capabilities.

b. Identify a standardized set of data elements for hospitals.

c. Revise reporting requirements to include required elements.

d. Provide training to the staff of each of the 22 birthing hospital as necessary to assure consistency of reporting.

4. Standardize the reporting of hearing loss from multiple sources.

Presently the Wyoming Newborn Hearing Screening Project does not collect data on the type of hearing loss nor on the intervention provided. In regard to the latter, it will be relatively simple to gather intervention data from early intervention (Part C) and developmental preschool (Part B, Section 619) programs because these providers are under contract with the Department of Health and already report services via an electronic reporting system, which has replaced an older electronic management information system. Some adjustment may be necessary to enable the two systems to interface, but as licensee of the electronic reporting system, the Department of Health may contract with thg software company to produce new reports specific to children with hearing impairments. The Department will then provide the revised version to Wyoming's developmental preschool programs. The CRHRE Liaison for the Early Hearing Detection and Intervention is also the Principal Investigator for the Head Start Collaboration Project and will be called upon to get data from Head Start programs. Ten percent of all Head Start children have disabilities, but seldom do these children have significant disabilities. Nevertheless, the WY EHDI Project will identify children with hearing loss in the Head Start system.

5. Map children with hearing loss to University of Wyoming CRHRE Geographic Information

System .

Once the barriers to data sharing have been removed and other reporting issues have been resolved, the University of Wyoming Center for Rural Health Research and Education (CRHRE) will begin to map the data to its existing geographic information system (GIS) to facilitate epidemiological research. Presently the GIS has primarily geological and economic data for Wyoming. The CRHRE Liaison and the CRHRE staff will be responsible for adding health, disease, and disability indicators to the system.

The Goals and Objectives include considerable discussion of the methodology. As we being this section, we should reiterate that Wyoming is not developing a reporting system, which it already has, rather it is upgrading the Universal Newborn Hearing Screening system to accomplish the goals of this proposal. .

1. Defining System Needs

The Principal Investigator will take the lead on this issue, working with the Manager of the Office. of Vital Records, the Genetics Program Manager, the vision and screening programs staff, the CRHRE Liaison, and the Assistant Attorney General to determine the legal barriers to connecting electronic birth records with the results of the newborn hearing screening, early childhood vision screening, and metabolic screening. The Office of Vital Records operates under specific statutes, which prohibit the sharing of individual data, but do allow sharing of aggregate data. Presently, the statutes are silent on the sharing of individual data without personal identifiers, what the Request for Proposals refers to as anonymized data. Whether the Office of Vital Records can share anonymized individual data with other EHDI recipients is not clear, statutory changes may be required.

Additionally, the present reporting system is accomplished primarily via subcontract with the developmental center that employs the Project Director, who was the force behind the initiation of the Newborn Hearing Screening Project. The Project Director, Nancy Pajak, CCC-Aud., is primarily responsible for assuring that the nurses at Wyoming's birthing hospitals are trained, the instruments operate correctly, that data are submitted on a regular basis, and that the data are reported to the Newborn Hearing Screening Committee and the Early Intervention Council, which funds the system. While the present system works very well, the goals of this Project can not be accomplished without a significantly different vision for the system.

The Newborn Hearing Screening Committee includes the Program Manager for Wyoming's Genetics Program, but the data that the Program Manager includes in the State's Maternal and Child Health Block Grant derive from many sources, as indicated previously. Diagnostic Data are reported by out of. state laboratories and primary care physicians, as the data are reported to them. The Genetics Program does not gather data on each newborn who passes a blood spot screening, rather it g4thers data based upon diagnostics, making the data received of a different order than that received by either the Newborn Hearing Screening (NHS) or the Vision Screening systems. Melding these systems will require the Department of Health, Developmental Disabilities Division, Part C Coordinator to assemble the respective units of the Department to identify barriers and propose possible solutions, including changes in legislation, to the integration of the screening data. The Computer expert included in the budget will have a significant role at this point, as the integration of the output of these programs will require considerable expertise in the manipulation of data.

Activity (Person Responsible)

A. Identify legal barriers to sharing data (PI, PD, Attorney General)

B. Review existing contractual arrangement in light of barriers (PI, NHS Committee)

C. Propose legislative/administrative changes as necessary (PI, Attorney General)

D. Develop consensus for implementing necessary changes (PI, NHS Committee)

E. Implement changes (PI, PD)

2. Populate the Database

Completion of this goal will depend upon resolving the issues raised by the first goal. Given that, completion of all Project goals may riot be sequential, but concurrent. At the present time, it is not clear how compatible is the software programs that handle the four screening systems involved: 1) the birth records are electronic in some but not all hospitals, 2) the Colorado newborn hearing screening tracking software that Wyoming is evaluating, but has not purchased, 3) the Vision Screening Data tracking system Wyoming has agreed to purchase from Vanderbilt University, and 4) InfoHandler, which is the management information system that tracks demographic and developmental data for infants, toddlers, and preschool aged children who receive special education and related services through the Department of Health. We do know that metabolic screening results do not come from a single source, and are not tied to individual birth records. The aggregate data indicate the number screened and not screened, but not the individuals.. Clearly we will need to work with the birthing hospitals to determine the potential for reporting results on an individual basis and linking these results to the electronic birth records.

Activities

Activities A - E will be the responsibility of the Computer Expert

Activities F- H will be the responsibility of the Project Director.

A. Determine the output capability of each software program for the four screening activities

presently in place.

B. Identify or develop a software program capable of accepting the output from each of these. `

C. Establish a system for assigning a unique identifier for each individual.

D. Merge files, clean data.

E. Prepare export file for CRHRE geographical information system.

F. Contact each of the 14 regional developmental preschool programs to identify all children with

any level of hearing loss. .

G. Cross reference all children with late or progressive hearing loss to master file.

H. Establish mechanism to update data file for late or progressive hearing loss.

3. Revise Hospital Reporting

As Wyoming moves in the direction of integrating its reporting for newborn hearing, early .childhood vision, and metabolic screening, we will have to review the computer capability of each hospital, in particular, in regard to output capability. We are interested in maintaining the positive working relationship with the 22 birthing hospitals and so are not interested in increasing their cost. We will need determine what, if any, changes will be needed at each hospital to connect newborn hearing and metabolic screening (vision screening will not be conducted until the newborn is at least 12 months old, the results of the vision screening will be gotten from developmental centers rather than hospitals). To accommodate variations in the computer output from hospitals, we will either have to specify an output dataset including variable names or create a program that will look for specific variable names depending upon the hospital. For hospitals that do not submit electronic records, we will continue to accept hard copy results. In either case, we will need to continue training of the hospital staff and nursery nurses.

Activities Person Responsible

A. Determine data submission preferences for the 22 birthing hospitals (PI & PD)

B. Review output files and the field names for hospitals electronically submitting birth records. (I, PD, Computer Expert)

C. Determine the feasibility of standardizing the output dataset (Computer Expert)

D. Train hospital staff to submit combined hearing & metabolic screening (PD)

4. Standardize Reporting of Hearing Loss

The Project Director for the Newborn Hearing Screening Project is an audiologist and will take the lead on this issue, guidance will be sought from the Centers on Disease Control on the preferred format. The audiologists in Wyoming represent a relatively small group. They will be consulted about best practices in reporting of hearing loss.

Activities Person Responsible

A. Review present reporting alternatives among audiologists (PD)

B. Determine best practices in reporting (PD)

C. Consult with Wyoming's audiologists & CDC about possible changes (PD)

D. Develop a draft of a possible standardized reporting format (PD)

E. Circulate to audiologists, revise as necessary (PD)

F. Circulate final version to Wyoming's audiologists and developmental centers who make referrals out of state. (PD)

5. Map data to Geographic Information System (GIS)

Mapping the newborn hearing, early childhood vision, and metabolic screening into Wyoming's GIS will be the responsibility of the CRHRE Liaison and the CRHRE staff. This activity can start as soon as the Project begins, even before data are made available. CRHRE Liaison and the CRHRE staff will meet with the Project staff early in the process to determine the format in which the CRHRE will require the data. Again, it may be necessary for the Computer Expert to help determine how to code the case records and format the data.

Activities Person Responsible

a. Determine the preferred data format for Wyoming's GIS (CRHRE Liaison)

b. Develop output files for each screening system (Computer Expert)

c. Submit draft output files for entry into GIS (Computer Expert)

d. Verify accuracy of GIS input (CRHRE Liaison, Computer Expert, PD)

Collaborative Efforts

As discussed above, Wyoming has a Newborn Hearing Screening Committee, which has recently expanded to include vision screening. The Committee is comprised of representatives of the Department of Health, Department of Education, hospitals, audiologists, school districts, and with the addition of vision screening, a representative of the Wyoming Optometric Association, and project staff. This Committee meets quarterly. The Wyoming Newborn Hearing and Vision Screening Committee will serve as the advisory board for the Early Hearing Detection and Intervention Project. The Associate Director of the Wyoming Institute for Disabilities at the University of Wyoming will be the liaison for the Center for Rural Health Research and Education (CRHRE) and for the Wyoming Head Start programs. The Associate Director also serves on the Wyoming Newborn Hearing and Vision Screening Committee.

The development of this application was a joint effort of the Project Director for the Newborn Hearing Screening Committee, the University of Wyoming, and the Department of Health, Developmental Disabilities, and Family and Community Health divisions. Implementation of this proposal will require the cooperation of the Newborn Hearing and Vision Screening Committee, which supported -the development of this application, the Department of Health, Office of Vital Records, and Wyoming's 22 birthing hospitals. The existing reporting system was developed in cooperation with these entities and changes must be jointly developed.

The Principal Investigator for the Wyoming Early Hearing Detection and Intervention Project will be David Haines, Ed.D. Dr. Haines completed his doctorate in special education and has nearly 30 years experience in early child special education, Head Start, local school district special education programs. Dr. Haines will supervise Jason Jones, Part C Coordinator for the DD Division. As the Lead Agency under Part C of IDEA, the DD Division has the responsibility to coordinate early intervention services across agencies. Jason is the logical person to coordinate the efforts of this project.

The Co-principal Investigator will be Jason Jones. Jason was recently hired as the Part C Coordinator for the Department of Health, Developmental Disabilities Division. Jason has a bachelor degree in early childhood special education and elementary education and has nearly seven years experience in early childhood special education programs. As a recent hire of the Department of Health, Jason has not yet become assigned to committees and task forces and, consequently has the time to provide oversight of the Early Hearing Detection and Intervention Cooperative Agreement. Jason will be the contact point for the Project Director, CRHRE Liaison, and the other key players in the Department of Health.

The Project Director will be Nancy Pajak, MS, CCC-A., who presently directs Wyoming's Newborn Hearing Screening Program. The project director has 24 years of experience and education in the fields of audiology, speech/language pathology and early intervention. The project director has. been successful in bringing stakeholders to the table to develop the Universal Newborn Hearing Screening Committee and has been instrumental in the development of the vision screening project as well. Presently Nancy Pajak is responsible for managing the data for the newborn hearing screening project and reporting to the Committee and the state's Part C Interagency Coordinating Council. She has also developed a partnership with all birthing hospitals throughout Wyoming, which will be essential for the success of the Wyoming Early Hearing Detection and Intervention Project. The project director's position for the EHDI program is paid for by the DDD.

Ms. Pajak will be responsible for monitoring and maintenance of the hospital screening program. Activities that help to accomplish this include: 1) a public awareness program about the importance of newborn hearing screening directed toward parents and health care providers; 2) training and technical assistance as needed to hospital nursery staff; 3) gather and compile monthly manual data from 22 birthing hospitals; 4) tracking and follow up of identified children; and 5) data management and analysis reporting to the state legislature.

Susan Delicath has a bachelors degree in elementary education and eight years in early childhood education. Susan is presently the Assistant Project Director for the Newborn Hearing Screening Project. Susan works for Nancy Pajak. Susan is responsible for data collection and compilation, and follow up with those children referred for diagnostic evaluation.. Susan also tracks that infants referred for early intervention become enrolled in Wyoming's early intervention programs. Susan is very familiar with' the data system and has frequent contact with Wyoming's birthing hospitals, audiologists, and families. Susan has also been involved in the training of hospital personnel on the data aspects of the Newborn Hearing Screening Program.

Ken B. Heinlein, Ph.D. will be the Liaison to the CRHRE at the University of Wyoming. Dr. Heinlein is a former director of the Department of Health, and is presently Associate Director for the Wyoming Institute for Disabilities. Dr. Heinlein has been involved in the development of the Early Childhood Vision Screening Project and is also a member of the Wyoming Newborn Hearing and Early Childhood Vision Screening Committee. Dr. Heinlein will work with the Department of Health as it links the hearing, vision, and metabolic screening results with the electronic reporting system for intervention services provided to children identified during the screenings.

As part of its Affirmative Action Program, the Wyoming Department of Health assures that it is an affirmative action/equal opportunity employer. With the current working environment and existing agreement on UNHS goals and objective among all stakeholders, Wyoming will be able to achieve the stated outcomes as proposed in this project.

Organizational Structure

The Wyoming Department of Health (WDH) is the government entity responsible for programs and services that safeguard the health and welfare of Wyoming Citizens. Part C and Title V programs are nested within the WDH. WDH coordinates its activities with other state agencies and with many organizations throughout Wyoming to address the comprehensive problems of access to health care for all citizens. WDH; Public Health; Continuum of Care Divisions are as follows: Aging, Community and Family Health, Developmental Disabilities, Mental Health, Preventive Health and Safety, and Substance Abuse. (Please see Attachment 6 for organizational chart.)

The CFHD, MCH Section houses the program for children with special health care needs called' Children's Special Health (CSH). Also included within the CFHD is the Public Health Nursing (PHN) Section and the Office of Primary Care (Medicaid) which has promoted greater collaboration with these areas. MCH contracts with each of the 23 public health nursing departments to carry out MCH programs at the county levels. One of these projects includes following up on any newborn hearing screenings or diagnostic evaluations that have not been completed, referral for intervention. Another vital part of the CSH is the Office of Primary Care which works in collaboration with PHN programs on the beginnings of a medical home project for children with special health care needs. Through chart audits, telephone conferences and regional meetings it has been determined that most CSH clients have a primary care provider but do not have a medical home matching the current description by the American Academy of Pediatrics.

The Developmental Disabilities Division has administrative oversight of Wyoming's Newborn Hearing Screening Program. This application does not anticipate an immediate change to the existing approach, but will evaluate the administrative arrangement in light of the data and confidentiality requirements implicit in this proposal. The DD Division will be responsible for the contractual arrangements and administrative control of the Wyoming Early Hearing Detection and Intervention Project in any case. As the lead agency for the Part C Infants and Toddlers Program, the Division has on-going relationships with those agencies involved in early intervention with young children with disabilities. Representatives of these agencies serve on the Early Intervention Council, providing a forum in which coordination issues can be addressed.

Facilities

The existing Newborn Hearing Screening Project has office space in Laramie, the cost of which is funded by the contract with the DD Division. Within this existing office space are the computers, office furniture, telephone lines and fax machine to be used by the Newborn Hearing Screening Project. Additional office space is not anticipated as this project proposes expanding the commitment of staff, rather than adding staff. Office space for Dr. Heinlein and the CRIME will be provided by the University at no cost to the Project, in the event additional space is required, accommodations can be made at the University.