Wyoming MCHB Grant
Grant Abstract
Project Title: Wyoming Universal Newborn Hearing Screening Program
Project Number: CFDA 93.251
Project Director: Nancy Pajak Phone: 307-721-6212 Fax: 307-721-5982
E-mail: nanpajak@aol.com
Organization Name: Wyoming Department of Health Developmental Disabilities Division and the Family and Community Health Division
Address: 715 Shield Street, Laramie, WY 82072
Contact person: Jason Jones Phone: 307-777-6972 Fax: 307-777-6904
Project Period: 4 years
From: 9101/01 to 9/30/05
The Wyoming Department of Health is submitting this proposal as a collaborative effort between the Title V administrative unit ( Family and Community Health Division) and the lead agency for Part C of IDEA (Developmental Disabilities Division), both units are under the administrative direction of the Department of Health. The Developmental Disabilities Division initiated the infant hearing screening project with Part C funds. The Family and Community Health Division, through both the Children's Special Health Services and the Public Health Nurses, have been actively involved in development and direction of the project and follow up with the families of identified children. The Part C agency and. the Title V units are responsible for the continued development of a Universal Newborn Hearing Screening Project in Wyoming. Children's Special Health Services (CSHS) is administratively located within Maternal and Child Health-Division of Family and Community Health within the Wyoming Department of Health. The CSHS program is the Title V agency in the state for children with special health care needs.
Purpose
As stated in the program guidance, the purpose of the project is to refine and continue improved implementation of a program of statewide universal physiologic newborn hearing screening with linkages to medical home, ongoing family-to-family support, audiologic diagnostic evaluation by three months of age, and enrollment of early intervention by six months of age for those infants identified with hearing loss. In addition, Wyoming will refine its program infrastructure to ensure that children and families receive holistic, culturally competent, and community-based services which are appropriate for children who are deaf or hard of hearing.
Challenges
Wyoming is the 9th largest state, but a population density of about 5 per square mile is approximately that of the thirteen colonies. Wyoming is a rural and frontier state. Most of the births in the state occur in small facilities. There are approximately 5800 births per year. In 1994 Wyoming implemented a Universal Newborn Hearing Screening program. Antiquated equipment and data collection systems are currently being used in Wyoming. An efficient electronic data system and updated screening equipment are needed to ensure Wyoming's children have access to Universal Newborn Hearing Screening, referral, diagnosis, and appropriate intervention.
Goals and Objects
The project will provide financial assistance for: 1) Purchasing of updated physiologic hearing screening (automated auditory brainstem response/AABR and otoacoustic emissions OAE) equipment and training in the use of the .equipment. The objective is to screen 100% of infants by 2005: Wyoming currently screens 98% of the infants before they are discharged from the hospital at the time of their birth. 2) Develop criteria/requirements for a data management system, review various systems and options, grade and rank each system based on criteria/requirements, and implement a comprehensive data system. 3) Developing an evaluation process for each component of the UNHS:
This project continues to build partnerships with local hospitals in implementing and reporting UNHS results. Updated equipment is needed if Wyoming is to continue to offer effective UNHS. Follow-up, referral to diagnosis, and enrollment into early intervention services are currently present in Wyoming. However, refinement is needed to improve the program. A comprehensive data management system to facilitate tracking and minimize the number of families that might "fall through the cracks" and statistical information to justify the importance of this project is needed. Children are enrolled in early intervention programs at an earlier age upon diagnosis. Research demonstrates this is important to the child's development. It has become apparent our professionals need enhanced skills to program effectively for this new population of special needs children. We have offered braining and technical assistance in developmentally appropriate programming for children and their families through a Model Demonstration Team that travels the state: Further professional development will be offered through courses at the University of Wyoming in Trends in Working with Children who are Deaf or Hard of Hearing.
Evaluation
The results of this project will provide the data for the Title V MCH performance measures that are reported annually. In addition, an established electronic link to birth certificate information in the Office of Vital Statistics through the CSHS database assures 93-100% of the births in the state have received screening. Contracting with the Wyoming institute for Disabilities for external prom evaluation will be used.
Text of Annotation
Project will refine anal improve the Wyoming UNHS project. The project will assist in the upgrade of equipment for screening and an electronic statewide system of data and tracking for hearing screening, follow-up and intervention. The data system will give the state and communities a measurable means for determining efficacy of the UNHS program and will involve the defined data points as developed by the Center for Disease Control. Professional growth and development will be offered through the University of Wyoming and the proposal would defer the cost of classes for representative team members from regional developmental centers. The project will be evaluated through a combination of quantitative and qualitative reporting mechanisms.
Key Words
Universal newborn hearing screening, early identification of hearing loss, deaf, hard of hearing, hearing impairment, early intervention, medical home, community and family centered, newborn metabolic screening linkage.
PROJECT NARRATIVE
Background
Wyoming is a large, frontier state in the western part of the United States with an estimated population of 480,000. The state's birth rate has remained steady at about 5800 births per year. There are 22 birthing hospitals including two situated on the 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 younger 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 UNHS (NIH, 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 the Department of Education and the Department of Health, on the behalf of the State of Wyoming, evaluated the success of 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 of 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, promoted the development of a coordinated system that ensured quality components at all levels of the hearing screening program. A list of the membership is included in Appendix A. As the model program proved to be successful, the project was expanded to include the 22 birthing hospitals in Wyoming (Appendix B). 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 with Part C funds. The State provided consistent training, follow-up, and data reporting procedures.
Nursery staff is responsible for conducting hearing screening in Wyoming hospitals. Nursery staff received training on equipment use, screening protocols, and giving feedback to parents and physicians. Early intervention personnel front Wyoming's fourteen preschool regions (Appendix C), as well as physicians within the community were also invited and attended the initial training sessions regarding UNHS. This allowed for the community to begin to develop its team approach to service delivery for this newly identified population.
Due to the rural nature of our state and the resultant necessity to drive long distances for diagnostic audiologic evaluation, conservative screening and follow-up protocols were recommended and implemented. Refer to Appendix D for a copy of screening and follow-up protocols.
As reflected by the screening and follow up protocols (Appendix D); medical home involvement is central to the follow-up process in Wyoming. Hospital nursery staff directs information regarding failed initial or second screenings to the medical home. Data forwarded monthly to the Department of Health-Developmental Disabilities Division is reviewed for failed screenings. The State tracks families and children with failed screenings in collaboration with medical home personnel, public health nurses and hospital staff.. This support has been critical in completing the screening process and diagnostic testing. This process has enabled children with hearing loss to enter into early intervention programs prior to the critical six-month time frame.
Minimum standards for diagnostic audiologic evaluation were developed and shared with the audiologists (Appendix E). This document helped support competent, accurate diagnosis by three months of age by directing parents and their babies to appropriate locations for the audiologic diagnostic appointment(s).
The Wyoming State Senate and the Wyoming House of Representatives passed legislation mandating newborn hearing screening for Wyoming's youngest citizens with overwhelming support in early 1999. Senate Enrolled Act Number 9 took effect on April 1, 1999 (Appendix F).
This application is submitted by the Wyoming Department of Health, Division of Family and Community Health, in collaboration with the Developmental Disabilities Division, in response to the CFDA # 93.251-Integrated Services for Children with Special Health Care Needs Priority: Universal Newborn Hearing Screening and Intervention. Wyoming is applying for this grant to refine and improve its existing Universal Newborn Hearing Screening (UNHS) Program. The purpose of this proposal is to enhance Wyoming's UNHS program through development, refinement, and implementation of four key goals. Our vision is to refine and further develop comprehensive, coordinated newborn hearing screening among Wyoming's birthing hospitals and further develop family-centered, culturally-competent and community based early intervention services to Wyoming children and their families. Four specific goals are targeted in this proposal:
Goal 1: During the project period, update current infant hearing screening equipment to replace aging equipment currently in use in Wyoming hospitals.
Goal 2: Develop a comprehensive electronic statewide data and tracking system.
Goal 3: Refine and implement a comprehensive evaluation process of the Wyoming Universal Newborn Hearing Program.
Goal 4: Prepare early intervention professionals in working with infants and children. who are identified as deaf or hard of hearing.
Through these activities the State of Wyoming Department of Health, Family and Community Health Division in collaboration with the Developmental Disabilities Division will support the Maternal and Child Health Program goals for successful statewide implementation of a quality, sustainable universal newborn hearing screening program. At the end of the fourth year of the proposed project, the anticipated outcomes will be:
The proposed UNHS Program would continue to be administered through the Developmental Disabilities Division in collaboration with the Department of Health, Family and Community Health Division (CFHD). The CSHS section has primary responsibility for monitoring and impacting the federal MCH performance measures related to Children with Special Health Care Needs (CSHCN) and their families. Staff members reporting responsibilities as related to this project include:
Wyoming Department of Health-Developmental Disabilities Division has implemented an UNHS education/training component for hospital nursery staff throughout the state including the two reservation-based hospitals.
The broad base of support for UNHS in Wyoming will enable us to continue the sound foundation that has been established to support this vital process. The effectiveness of Wyoming's UNHS project depends upon collaboration among state agencies, legislators, medical and educational personnel and the general population.
The Principal Investigator, Jason Jones, has experience and education in the area of special education. His current position involves oversight and administration of Federal Part C Program, interpretation of Federal and State laws governing services for children birth to three, providing monitoring and evaluation of Wyoming's 42 early intervention program sites and individual plans. Ensuring the 16 administration components of the federal early intervention program are in place and operational, acting as a liaison to- Governor's Early Intervention Council for the Department of Health. Mr. Jones is responsible for writing Rules and Regulations for the State birth through two program, providing training and technical assistance to 42 developmental centers as well as, establishing partnerships with hospitals, doctors, health care providers, etc. to promote systems change with emphasis on prevention. Mr. Jones will have the overall responsibility for the management of the Universal Newborn Hearing Screening program. He will be assigned to this project for up to 10% of his time.
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 Advisory Board. She has also developed a partnership with all birthing hospitals throughout Wyoming in order to fulfill the vision of the UNHS program. The project director's position for the UNHS program is paid for by the DDD.
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. Administrative 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 Division, Continuum of Care Divisions are as follows: Aging, Community and Family Health, Developmental Disabilities, Mental Health, Preventive Health and Safety, and Substance Abuse (Appendix G).
The CFHD, MCH Section houses the program for children with special health care needs called Children's Special Health Services (CSHS). Also included within the CFHD are the Public Health Nursing (PEI) Section and the Office of Primary Care (Medicaid) which has promoted greater collaboration among 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 include following up on any newborn hearing- screenings that have not been completed. Another vital part of the CSHS 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 roost CSHS clients have a primary care provider but do not have a medical home matching the current description by the American Academy of Pediatrics. Many of Wyoming's children with special health care needs go to specialists for their specific needs and a primary care provider when they have a specific health care need that does not require a specialist. Most Wyoming families do not have a medical home from whom they receive "24/7" wellness and illness care. A medical home would provide the coordination the family needs for all their health care needs including coordination between specialists and the child's school. Currently, the family is left on their own to accomplish relationships between these entities. In addition, Wyoming passed legislation requiring contact by a PEN to 95% of all Wyoming infants born in the state. Senate Enrolled Act 30 further supports PHN's ability to facilitate follow-up and medical home procedures.
The David Olds Program is being utilized as one method of working with first time teen mothers from 20 weeks of pregnancy to the two-year birthday of the infant. The PHN follow these children closely and encourage medical homes, early screening and intervention. David Olds is a research-based program that provides special protocols for the provision of home visiting services to teenage mothers and their child during pregnancy and the early childhood years. A program to follow premature infants who qualify is in the development stage. Referrals and supports are provided as is necessary for the families. CSHS and the Developmental Disabilities Division both sit on the Universal Newborn Hearing Screening Advisory Board and the Early Intervention Council. These affiliations allow for easier collaboration and pooling of resources as it pertains to early screening and intervention.
Beginning in 1994, the Developmental Disabilities Division has provided the UNHS with annual Part C (then Part H) funds to manage the program. This financial assistance will continue in the future. With these funds, the Universal Newborn Hearing Screening Project has provided:
As mentioned in the Organizational Experience and Capacity section, the Project Director, Nancy Pajak, M.S., CCC-A will continue to be funded through Part C funds. In addition, the Principal Investigator for this proposal will be Jason Jones, Part C Coordinator for the Developmental Disabilities Division at no additional cost to the program. A part-time data collection position for the UNHS program has been supported through the DDD Part C funds. This position will be involved in the development of an improved data system that will allow for improved follow-up and tracking components.
In order to refine and improve the existing Universal Newborn Hearing Screening Project, staff will collaborate with a variety of agencies and groups. The Project Director will continue to ensure that collaborative activities with existing agencies are coordinated appropriately. Ms. Pajak is responsible for the day to day activities of the project. She is the contact person for the birthing hospitals and has the responsibility for training of hospital staff and coordinating the Model Demonstration Team training throughout the state.
In calendar year 2000, 98% of Wyoming newborns were screened (See Appendix L) Hospitals currently are using AABR computer-based technology -which was purchased in 1994. All hospitals are using the recommended protocol. If grant funds are received, the older AABR only equipment will be replaced with equipment capable of performing both AABR and OAE. This two-tiered step would allow for reduction in the false-positive rate, and thus reduce the. cost of needless follow-up screenings for infants with normal hearing acuity. It would also allow for additional early information on those children who may experience auditory neuropathy problems.
There are early interventionists and speech therapists available in all regions of the state to provide intervention and treatment for children who have a hearing loss. The number of pediatric audiologists in the state is low at this time and continues to be assessed every two years to determine what additional training is needed for Wyoming audiologists and if regional centers for assessment need to be developed.
Technical assistance is available to Wyoming through the National Center for Hearing. Assessment and Management, Utah State University in Logan, UT and through the Marion Downs National Center for Infant Hearing, University of Colorado in Boulder, CO.
The target population of Wyoming's UNHS Project is all newborns born in the state. This includes infants born on the Wind River Indian Reservation as well as infants born at home. Wyoming has a large Mennonite population in the southeast comer of the state who frequently give birth at home.
Home births account for approximately 48 births a year. As infants are brought to their medical homes for newborn infant screenings, the hearing screening is conducted -when there is 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. Our data indicate that 2% of all live births result in a child with a significant hearing impairment. This requires follow-up on approximately 116 infants a year. Universal Newborn Hearing Screening was initiated in 1994, at present 100% of Wyoming's birthing hospitals are participating. Currently; 98% of the newborns are screened at the birthing hospitals. Current success in participation from Wyoming hospitals, is in large part due to the fact that AABR units were provided at no cost to them. Many units, now seven years old, need to be replaced with updated AABR/OAE equipment in order to ensure further success and accuracy of the project If the financial responsibility is left to the hospitals, antiquated units would not be replaced, and Wyoming's children would not fully benefit from the UNHS. The purchase of AABR/OAE equipment will allow children six months and older to be screened at the birthing hospital. Current AABR equipment is not standardized for children six months and older. This would enable the hospitals to do some of the follow-up screening with the OAE equipment and reduce the number of children lost to follow-up.
A critical aspect of the screening program is the assurance that the newborns identified with hearing deficits have appropriate follow-up and intervention. Developing a data management system that is compatible with all hospitals screening infants will facilitate the process and assure infants won't be lost to follow-up. Wyoming has limited audiology coverage for its 23 counties. Parents often need to travel great distances to get the audiometric diagnostics completed for their child. Wyoming children travel to the University of Wyoming in Laramie, WY, which is located in the southeastern comer of the state or to Casper, WY located in central Wyoming. Often Wyoming children and families travel out of state to Billings, MT, Denver, CO, or Salt Lake City, Utah. Follow up with these families becomes vital to make sure the need for travel to meet their child's need does not discourage them. This becomes critical when a baby whose parents reside in one of our more rural counties is born and screened in a more urban environment and requires follow-up. The program coordinator for the Universal Newborn Hearing Screening Project may contact the public health nurse regarding the infant's needs and the necessary audiologic and/or intervention follow-up. There is public health nursing available in all 23 Wyoming counties. It is important to recognize that the rural and frontier nature of Wyoming, results in PHN's awareness of all infants born in their counties. This significantly enhances the ability to provide follow-up to our population.
Research has demonstrated the advantages of early detection and intervention for infants who are deaf or hard-of-hearing, as well as the consequences of late identification. Literature regarding the efficacy of early intervention is compelling, but will not be reiterated here. Early detection, if coupled with early, appropriate intervention, can make a life-long difference for a newborn with a hearing loss. Research has also demonstrated that when families are actively involved in designing and coordinating their child's early intervention, better outcomes are achieved. Wyoming has long understood the benefits of UNHS and the subsequent follow-up necessary for the success of these youngest citizens. This understanding is evidenced in the process Wyoming has made in designing and implementing UNHS during the last eight years.
To provide for realistic insight into our UNHS program, a State Advisory Board was formed (Appendix A). Information from surrounding states that were also developing UNHS programs was collected and reviewed. The National Center for Hearing Assessment and Management and the Marion Downs Center for Infant Hearing also provided much needed direction and technical assistance.
The State Advisory Board, determined the need to assess UNHS. Assessments concerning screening, diagnostic assessment and amplification, intervention and quality services were conducted three different times within the. state over a period of five years (Appendix I). The results of the needs assessments served to further refine the UNHS program implementation. Much success of UNHS was achieved through the voluntary participation of Wyoming's birthing hospitals. However, to support the voluntary efforts, the Wyoming legislature enacted legislation mandating W1 HS in April 1999 (Appendix F).
As UNHS in Wyoming has grown from infancy into adolescence, several barriers and special problems have been identified. The current financial environment among rural hospitals in Wyoming impedes adequate funding to acquire improved technological advances available in UNHS equipment. Lack of an electronic comprehensive data management system has been identified as a barrier to improving Wyoming's UNHS program. Current screening equipment is regularly out of service due to computer problems or lack of screening supplies. This leads to additional staff time to follow-up with infants who were discharged prior to having their hearing screened.
Other identified barriers are: Wyoming's frontier environment; sparse population and widely scattered communities, challenging weather for much of the year, mountain ranges that can not always be crossed, and limited air services. These result in increased travel distances for training nursery staff, monitoring equipment and compliance with screening protocols. Additional barriers include small hospitals without audiology staff, counties with very low birth rates, limiting the frequency that nursery staff have to use their skills, home births resulting in no screening of newborns, and continued training for professional early interventionists to assure appropriate intervention upon identification of infants with hearing loss. While not all these needs will be met with these grant funds (nor should they be considered Federal responsibility), the primary needs to be addressed by this request for funds are replacement for the hearing screening equipment in Wyoming's hospitals with the greatest birth rates and continued training for early intervention providers.
State level involvement ensures ongoing quality assurance, program development and maintenance. A CSHS tracking mechanism is being developed using the birth certificate data and referrals and is close to full implementation.
As is demonstrated throughout this grant application, Wyoming's UYHS program has been successful thus far due to the collaboration and networking that already exists within the UNHS program. The Wyoming UNHS program will continue to collaborate closely with representatives from a wide variety of organizations and agencies. Enthusiasm, at the local and sate level, for Wyoming's UNHS program is evident by the letter of support for this project (Appendix J). Wyoming UNHS program collaborating partners are as follows: Wyoming Department of Health; Genetic Program Manager The Genetic Program manager is responsible for bringing to the program the experience and understanding of managing a program for infant screening that maintains confidentiality, accuracy and effectiveness.
Wyoming Department of Health; Community & Family Health Division
The Community and Family Health Division staff brings critical information to the project as it applies to MCH and medical homes.
Wyoming Department of Health; Developmental Disabilities Division
The DDD has provided funding for the UNHS program, sponsored training for Wyoming's developmental. center personnel, the medical community, and the general population.
Wyoming Department of Health, Maternal and Child Health; Children's Special Health Services
It has been through this division that the Public Health nurses have become a wonderful resource to Wyoming's UNHS. They provide some of the needed "leg worn" in following up on the status of referred children. This division continues to work toward establishment of a medical home for each of our state's children.
Wyoming Department of Health; Staff Physician, State Epidemiologist, Primary Care Services, Wyoming Medicaid
The responsibilities of these persons provide the program with respected communication pertaining to UNHS to physicians and medical staff throughout the state. Wyoming Medicaid personnel aid in assuring prompt and appropriate services to qualified individuals.
Wyoming Department of Education
Wyoming Department of Education has a deaf and hard of hearing education consultant who is a member of the UNHS Advisory Board and co-heads the Model Demonstration Team. Her services and input will continue with the UNHS program. The WDE is also represented on the Advisory Board by the Early Childhood Special Education consultant. This person is also active on the Intervention Task Force for the UNHS program.
Laramie County School District Number l; district audiologists
Two audiologists have been members of the Advisory Board since 1995. These stakeholders continue to give audiological perspective to the group as well as an educational perspective. Wyoming children have their first experience with public school when they enter kindergarten. Audiologists as well as the Department of Education personnel help the transition from a preschool program into a public school program be as cohesive and sensible as possible. University of Wyoming; College of Education, Early Childhood Special Education Program The University of Wyoming has played an active part on the UNHS since 1993. Pre-service training to students and technical assistance in the area of early intervention has been the focus. In the fall of 2001, the University of Wyoming will begin graduate level training in the area of working with children who are deaf and hard of hearing. Nine hours of graduate level study are scheduled at this time.
University of Wyoming; College of Health Sciences, Wyoming Institute for Disabilities (WIND)
WIND has been active in the UNHS program since 1993. WIND sponsors an annual Early Intervention Conference, which has several different strands focusing on services for children and families. Working with children who are deaf and hard of hearing, offering training/information on cochlear implants and best practices in early intervention are a small part of the conference offerings. An Early Childhood Special Educator from WIND is also a member of the Model Demonstration Team and will continue in that capacity in the future. University of Wyoming; College of Health Sciences; Department of Speech Pathology and Audiology
The representations of this department have played an enormous role in the development of audiological protocols, standards for the UNHS program and follow up procedures. Parent Representation Having parent representation on the Advisory Board and the Model Demonstration Team is a vital part of the UNHS program. A parent who has been through the hearing screening, referral, diagnostic evaluation, treatment, and intervention processes can bring a personal perspective. This experience allows the program members to be informed of parent and child issues that may be otherwise overlooked.
Wyoming Optometric Association, Wyoming Lions Clubs and Services of the visually impaired
These professionals provide the perspective and guidance as it pertains to vision impairment which is a higher incidence among the deaf/HOH population.
Collaboration among the State Advisory Board is facilitated and coordinated by the UNHS project director.
Hearing screening is an important step in a comprehensive early intervention system. Goals must include timely diagnosis and intervention for all infants identified through newborn hearing screening, as well as development of outcomes through. family centered, community-based, developmentally appropriate, coordinated and culturally competent services. The JCIH 2000 position statement established principles for operating an effective statewide Early Hearing Detection and Intervention (EHDI) program. These are paraphrased as follows:
With these principles in mind, the Wyoming Universal Newborn Hearing Screening Advisory Council has established the goals to be met over the course of this proposed project.
Goal l
The purchase of updated Automated Auditory Brainstem Response (AABR)l Otoacoustic Emissions (OAE) equipment.
Objective 1: Within the fast year of the project a needs assessment will be completed to prioritize the order in which the 22 birthing hospitals receive the updated equipment.
Objective 2: Within the first year of the project-antiquated equipment will be replaced in four of the state's birthing hospitals.
Objective 3: As updated equipment is put into place, training will be provided to the nursing staff completing the AABRIOAE screening.
Objective 4: Those hospitals receiving updated equipment will screen 100% of the newborns in their facilities.
Goal 2
Implementation of a comprehensive data management system. , Objective 1 Within the first year of the project, criteria/requirements for a data management system will be developed ' Requirements of a comprehensive system that the Wyoming UNITS project will explore include, but are not limited to, the following data clusters discussed during the Universal Newborn Hearing Screening and Intervention Technical Assistance Workshop:
Currently Wyoming's data and tracking system is non-electronic and completed by paper and pencil. Refer to Appendix K for additional information regarding this tracking system.
Objective 2: Review various systems (commercial) and options (customized in house) and rank and grade each system and option.
Objective 3: By the end of the project Wyoming will have implemented a comprehensive data management system. Training will include the transfer of data from local hospitals to the state data system. The data management specialist will require training to implement the system statewide
Goal 3
Develop an evaluation process for each major component of Wyoming's UNHS program.
Objective 1: Through quantitative data analysis evaluation of the efficacy of screening referral, follow-up, diagnosis, and child's established medical home will be reported to the Advisory Committee bi-annually. Objective 2: Through qualitative data analysis evaluation of appropriate intervention and family satisfaction of program will be monitored and reported to all stakeholders. Monitoring of progress in communication skills through the use of video taping, in cooperation with University of Colorado, has supported Wyoming's Developmental Centers in assuring appropriate. programming for children with hearing impairments and families. Monitoring Individual Family Service Plans (IFSP) and Individual Education Plans (IEP) for the targeted children will provide essential information regarding educational intervention. Interviewing parents of enrolled children will bring the parent/family perspective to the forefront in order that local programs can continually adjust to the needs of individual children and families. Long term tracking of children enrolled in developmental preschools throughout the state will provide information regarding skill levels in all areas of development upon entering kindergarten. Effective early intervention (as sited in Year 2000 Position Statement), depends on several factors: the age at which services begin, the duration of the enrollment, the intensity of the intervention, programming involving both direct and indirect learning, and the spectrum and flexibility of services offered to families to meet their needs.
Goal 4
Preparation of early intervention professionals in working with identified infants and toddlers. For the past two years, the Wyoming Department of Education and Wyoming Department of Health have supported Wyoming's Model Demonstration Team in providing training and technical assistance to the 14 regional developmental centers throughout Wyoming in working with children who are deaf and hard of hearing and their families. The Model. Demonstration Team consists of an audiologist, a teacher of the hearing impaired, a speech/language therapist, an early childhood special education teacher, a family service coordinator, and a parent of a hearing impaired child. (Appendix I).
Objective 1: Provide four follow-up training to teams working with- children with hearing impairments and their families throughout the fourteen developmental regions.
Objective 2: Offer nine hours of graduate level training at the University of Wyoming specific to working with children who are deaf and hard of hearing Classes will, focus on amplification issues, speech and language development, auditory process and language activities, and social/emotional issues far children and families. Objective 3: Offer up to fourteen stipends to help finance course offerings at the University of Wyoming to be used by a member of an educational team from Wyoming's developmental centers to further their professional development in this area Wyoming has one University, located in the southeast corner of tie State. Wyoming's large geographic area presents a barrier to ongoing, on-site educational opportunities, therefore, teleconferencing courses and video conferencing allows professionals to continue their education.
As noted in the budget, UNHS funding will support the purchase of updated equipment, training in the use of the updated equipment, a comprehensive data management system, and training in the use of that system. One contract-consultant will be supported from this proposal in order to build upon the evaluation process of the program .and the consultant will conduct the evaluation of the project at the completion of this four-year grant. A small portion of these funds would provide the opportunity for professionals in Wyoming to participate in the University of Wyoming course offerings. The Wyoming Department of Health supports an infrastructure which assures that standard accounting procedures will be applied in the management of this grant. These collaborative efforts will facilitate Wyoming's UHNS program to be among the best in the United States.
To gain understanding of Wyoming's UNHS program and the methodologies that have been practiced the past seven years, the process of UNHS will be summarized below. Refer to Appendix D for the Wyoming UNHS protocol.
Ninety-eight percent of the newborns in Wyoming receive a hearing screening prior to discharge from the hospital at the time of their birth. If an infant passes the hearing screening in both ears, parents ale informed of the results and reminded of auditory developmental milestones and the importance of typical speech and language development Parents are encouraged to keep well-child appointments with their primary care physician. When an infant fails the hearing screening in one or both ears, the parents are given a time and date for a follow-up appointment so as to provide a second screening before the infant is referred for an audiological evaluation. The child's primary care physician is notified via the discharge summary sheet or other specific means identified by individual hospital nursery protocols.
Our current system shows that 68% of the infants returning for a second screen will pass the second time. If an infant passes the second screen, the parents are reminded of the importance of typical auditory, speech and language development. They are also encouraged to keep well-baby appointments with their primary care physician. The infant's physician is notified of the results by nursery staff via an outpatient results form or other specific method identified by nursery staff. The conservative protocol (allowing for a second screening) has allowed for our false positive rate to be acceptable to the medical personnel within the state.
If a child fails the second screening, the parents are referred to their primary care physician, as well as given a list of sites at which to schedule an appointment for a diagnostic audiologic evaluation. This list is updated on an annual basis and forwarded to hospital staff and primary care physicians. Only those sites that offer testing as required for minimum standards are included on the listing. The primary care physician provides an order for diagnostic audiometric evaluations- Audiologists on our list are asked to have a release of information signed by the parents so the report results may be shared with the primary care physician as well as the state project director. When appropriate (i.e. a hearing loss is confirmed), the local child development center is contacted and given information regarding the family so as to initiate the process of entry into early intervention services. Parents are provided information about hearing aid fitting (if appropriate), ENT referral and other pertinent information (funding sources, etc.) A Family Services Coordinator supports the family through the IFSP process.
If a child does not keep the appointment for diagnostic audiometric evaluation, or if one is never scheduled, this information becomes apparent via the monthly summary report each birthing hospital shares with the project director. This process triggers a letter sent to the primary care physician and the public health nurse in the child's county. These entities have proven very cooperative in contacting families to ascertain the reason for the unkept appointment and to help problem solve when needed (i.e., transportation, cost, etc.).
If there is no response from the primary care physician and/or the public health nurse, a second letter is mailed to these entities. If, yet again, there is no response/follow-up on behalf of the primary care physician and/or public health nurse, the child is considered lost to follow-up.
The project director is in contact with each birthing hospital on a monthly basis either through written communication, email and/or phone calls. Due to the rural nature of our state, we have been able to develop individual relationships with each nurse manager in our 22 birthing hospitals. These relationships are nurtured by annual on-site visits by the project director and annual conference calls with 3 to 5 hospital nursery managers online. These calls, which take place shortly after the first of the year, allow for an annual "state-of-the-state" conference during which proposed protocol or system changes made discussed prior to implementation.
If the infant does not show up for their second screening appointment, the nursery staff contacts the family to discuss reasons for the unkept appointment (i.e., forgot the appointment, transportation, cost, etc.). If agreed to by the parent, another appointment is scheduled for, the second screening. If the child attends the second screening, the follow-up is the same as described in the previous two paragraphs. If the child does not attend the second screening appointment, the hospital is responsible for sending a certified letter to the family. The hospital nursery staff is also responsible for notifying the primary care physician of the child's current status as it applies to hearing screening.
Detailed information on this project's methodologies is included in the Project Time Line, Personnel Allocation Table, and the Goals and Objectives. The Project Time Line and the Personnel Allocation Table is found below. Refer to Appendix D for further clarification of the project's methodologies.
Information from each hospital database will be electronically transferred at the beginning of each month to the state UNHS program manager, who will have a version of the software, which aggregates the information from, each hospital into a state database. This data will be used by the state to assist with tracking and follow-up to ensure that all infants referred from the screening program receive timely and appropriate services. The state database will also be used to generate reports for quality assurance, technical assistance and program management.
Each goal will be evaluated through the use of a rubric: of the principles of UNHS as outlined in the Joint Committee on Infant Hearing Year 2000 Position Statement for Early Hearing . Detection and Intervention (EHDI) Programs. Those principles were paraphrased in the Goals and Objectives section of this document.
The Wyoming UNHS Project will develop their evaluation system and conduct an evaluation of the proposed project through quantitative and qualitative information to help refine and improve the state project.
Goal 1: Purchase of updated AABR1OAE equipment. (Principles 1 &.8)
Measure: Purchasing of new AABR/OAE equipment and training completed on the equipment in Wyoming's birthing hospitals.
Goal 2: Implementation of a comprehensive data management system (Principle 6)
Measure: Documentation of all information in order to perform screening, referral, diagnosis, and appropriate intervention.
Goal 3: Develop an evaluation process for each major component of Wyoming's UNHS program. (All principles)
Measure: Evaluation tool/rubric developed for each component
Goal 4: Preparation of early intervention professionals in working with identified infants and toddlers. (Principles 3,4,5,7)
Measure: Service providers enrolling in and satisfaction in completing course work.
1. American Academy of Pediatrics Task Force on Newborn and Infant Hearing. 1999. Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics 103 (2): 527-529.
2. Joint Committee on Infant Hearing. 2000. Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. American Journal of Audiology 9:9-29.
3. Healthy People 2010 Objectives: Draft Copy, 1999. Office of Disease Prevention and Health Promotion, HRSA, Washington D.C.
4. NIH. 1993. Early Identification of Hearing Impairment in Infants and Young Children. NIR Consensus Statement. 11(1): I-25.
5. Universal Newborn Hearing Screening Guidelines. 1999. Massachusetts Dept. of Public Health
6. Mehl, A. and Thompson, V. I S)98. Newborn Hearing Screening: The Great Omission. Pediatrics 101 (1): 1-6.
7. Yoshinaga-Itano, C., Sedey, A, Coulter, D., and Mehl, A. 1998. Language of Early-and
Later- identified Children with Hearing Loss. Pediatrics 102 (5): 1161-1171.
8. Early Identification of Hearing Loss: Implementing Universal Newborn Hearing Screening Programs. HRSA- 1-26.
9. APPENDICES: Implementing Universal Newborn Hearing Screening Programs. NCHAM I - 297.