OKLAHOMA

MATERNAL AND CHILD HEALTH IMPROVEMENT PROJECTS ABSTRACT

ABSTRACT

Organizational Setting

Oklahoma State Department of Health, Oklahoma Universal Newborn Hearing Screening and Intervention Project, Edd D. Rhoades, M.D., MPH, Project Director. The Oklahoma State Department of Health, Maternal and Child Health Service is responsible for the Maternal and Child Health Title V Block Grant. The Oklahoma Newborn Hearing Screening Program has been part of the Maternal and Child Health Service since its inception in 1983. The Maternal and Child Health Service has the following Divisions: Child and Adolescent Health, Women's Health, Child Guidance, SoonerStart Early Intervention, Immunization, Children First, Office of Child Abuse Prevention and Screening and Special Services. The Screening and Special Services Division has the following programs: Newborn Hearing Screening, Newborn Metabolic Disorder Screening, Genetics, Lead Poisoning Prevention and the Oklahoma Birth Defects Registry.

Purpose

The purpose of the Oklahoma Newborn Hearing Screening and Intervention Project is to reduce disability related to hearing loss by assuring that: 1) all newborns are screened prior to hospital discharge; 2) parents and the infant's health care provider have information regarding the screening, the results of the screening, parent support groups and appropriate follow-up based on screening results; and 3) infants who are referred through newborn hearing screening have access to diagnostic audiology evaluation by three months of age with enrollment in EI by six months of age for those children diagnosed with hearing loss.

Challenges

Through this project the Oklahoma Newborn Hearing Screening Project will negotiate agreements and provide physiologic screening equipment to Oklahoma hospitals and birthing facilities with an average birth census of 15 or greater so that they can provide newborn hearing screening to all infants. The project will work with birth attendants and hospitals with fewer than 15 births per year to assure that infants receive risk questionnaire screening at birth and are referred for physiologic screening through local county health departments. An integrated database will be developed with the Newborn Metabolic Disorder Screening Program, the Newborn Hearing Screening Program and Vital Records to develop a comprehensive follow-up system for Newborn Hearing Screening that includes linkage to the infant's medical home and ongoing family-to-family support. The capacity to assure that infants receive audiologic diagnosis by three months of age will be developed through purchase of diagnostic audiology equipment to be used by audiologists in county health departments, and all infant's at risk for hearing loss or who are referred through physiologic screening will be referred to the SoonerStart Early Intervention Program.

Goals and Objectives

• Goal 1: Using a physiologic method, screen the hearing of 97% of Oklahoma newborns prior to hospital discharge or within the first month of life.
• Goal 2: Assure linkage of NHSP to the infant's medical home.
• Goal 3: Assure access to comprehensive audiological assessment of infants referring on hearing screening before three months of age.
• Goal 4: Assure access to family support for caregivers/parents of infants with hearing loss.
• Goal 5: Assure access to early intervention services at least by six months of age for all infants with hearing loss.

Methodology

Project goals and objectives will be achieved through agreements with hospitals, development of an integrated database, use of advisory groups, development of a comprehensive follow-up system, parent and provider education, and expansion of diagnostic capacity.

Evaluation

The project will be evaluated through specific measures for each Goal and Objective. The integrated database will allow data to be collected to determine the number of infants screened, the number of those screened who received evaluation and at what age, the number who were referred for services, and the number who received services through SoonerStart Early Intervention and at what age they received these services.

Text of Annotation

The purpose of this project is to reduce disability related to hearing loss through a universal newborn hearing screening program. The goals of the project are to insure that all infants are screened at birth, that they are referred for appropriate follow-up including follow-up with their medical home and family to family support. Additional goals are that they receive audiologic evaluation by three months of age and that they are referred to SoonerStart Early Intervention by the age of 6 months. To achieve these goals agreements will be negotiated with hospitals, an integrated database will be developed, follow-up and diagnostic protocols will be developed, and provider and consumer education will be provided.

Key Words

Newborns, infants, screening, audiology, early intervention, follow-up, integrated database, medical home, hearing loss, hearing impaired

PROJECT NARRATIVE

The Purpose of the Project

The purpose of the Oklahoma Newborn Hearing Screening and Intervention Project is to reduce disability related to hearing loss by assuring that 1) all newborns are screened prior to hospital discharge; 2) parents and the infant's health care provider have information regarding the screening, the results of the screening, parent support groups and appropriate follow-up based on screening results; and 3) infants who are referred through newborn hearing screening have access to diagnostic audiology evaluation by three months of age with enrollment in EI by six months of age for those children diagnosed with hearing loss.

Disability related to hearing loss can be significantly reduced when identified and treated at an early age. Approximately 100 infants are born in Oklahoma each year that suffer from a congenital or perinatally acquired hearing disorder. Children with moderate to severe hearing loss who do not have appropriate opportunities to learn language will fall behind their hearing peers in language, cognition and social-emotional development. Such delays may result in lower educational and employment levels in adulthood. Prior to the implementation of newborn hearing screening programs, the average age of identification of hearing loss was 30 months of age. Children with mild to moderate losses were often not identified until they were school age.

The Joint Committee on Infant Hearing (JCIH) has recommended that all newborns should have access to hearing screening using a physiologic measure and that infants who do not pass screening should be re-screened and/or have diagnostic hearing evaluation before three months of age. The JCIH also recommends that infants identified with confirmed hearing loss receive services by six months of age and that infants with risk indicators for hearing loss be monitored for communications development. This project is designed to address these recommendations.

The Oklahoma Legislature passed legislation in 1982 to require a newborn hearing screening program (Title 63, Section 1-543 through 1-545). This screening program was initiated in 1983 through guidelines developed by the Oklahoma State Department of Health. The screening program was developed using a risk screening questionnaire that was to be completed by a health professional at the time of birth. Infants who were identified at risk were to be counseled by a health professional prior to discharge as to their infant's risk and follow-up information provided at four months of age. In January of 1998 the risk screening questionnaire was expanded to include results of electrophysiologic screening (Appendix A). In September of 2000 new guidelines were passed by the Oklahoma Board of Health requiring all infants born in hospitals with an average annual birth rate of 15 or greater to do physiologic newborn hearing screening (Appendix B).

This project has been developed to screen 97% of all newborns prior to discharge from the hospital using physiologic screening. The Oklahoma State Department of Health Newborn Hearing Screening Program (NHSP) as purchased physiologic screening equipment for every hospital. To date, 65 hospitals have signed Memoranda of Agreement to receive screening equipment and perform universal newborn hearing screening (Appendix C). Funding from the Department of Human Services Children with Special Health Care Needs (CSHCN) program has facilitated the purchase of 125 physiologic screeners (OAE - 27 units, Algo 2ec ABR - 71 units and Algo Portable ABR - 27 units). There are still eight hospitals that have not signed a Memorandum of Agreement to receive this equipment and provide the screening. Hospitals with fewer that 15 births will require education regarding referral of infants to screening sites around the state. An integrated data system with Newborn Metabolic Disorder Screening and Vital Records is needed to insure that infants are screened. Through this project, screening equipment will be placed in all hospitals with 15 or more births per year, education will be provided to all hospitals regarding newborn hearing screening, how infants are to be screened and how referral for follow-up screening will be achieved. Additional screening equipment will be placed in county health departments in rural areas to enhance screening capacity. The Newborn Metabolic Disorder Screening, Newborn Hearing Screening and Vital Records databases will be integrated to insure all infants are screened.

This project was developed to establish the additional goal of linking the newborn hearing screening program with the infant's medical home. Newborn Hearing Screening information provided by the hospital will include the infant's primary care provider/medical home. Results of physiologic screening are available to the provider while the infant is still in the hospital, so the provider knows the result of the screening and can counsel the family at that time. Follow-up from the Newborn Hearing Screening Program will include information to the primary care provider/medical home regarding referral resources and appropriate follow-up. This project will also assure access to audiologic diagnosis by three months of age by working with private audiology providers and enhancing the capacity of the public health system to provide diagnostic audiologic equipment in county health departments with audiologists. Ongoing family to family support for families who have a child with a hearing loss will be achieved by providing information to families regarding groups available to them and providing consumer input into the newborn hearing screening advisory groups. The newborn hearing screening program will continue to work with the SoonerStart Early Intervention program to collaborate and share data to insure that children with hearing loss are provided services by the time they are six months of age.

In August of 1983 Oklahoma became the 5th state to implement a newborn hearing screening program. The program was implemented through the passage of legislation that charged the Oklahoma State Department of Health (OSDH) with developing procedures and guidelines for the administration of screening procedures. The Commissioner of Health named an advisory task force to develop guidelines for this program. The task force developed a questionnaire that identified seven risk factors for hearing loss. This questionnaire was to be completed for each child born in Oklahoma at the time of birth by a health care professional (physician or nurse). The advisory task force also assisted in the development of a plan to follow "at risk" infants and encourage parents of these children to have their infant's hearing evaluated. In January of 1998 an eighth risk factor, not passing an electrophysiologic hearing screening was included on hospital questionnaires. Some hospitals on their own initiative began purchasing their own equipment in 1997 to perform electrophysiologic hearing screening. In 1998 the Children with Special Health Care Needs program in the Department of Human Services agreed to provide funds to the OSDH to purchase electrophysiologic hearing screening equipment for all hospitals that had an average of 15 or more births per year, and to county health department sites in rural areas with hospitals with less than 15 births per year.

The Oklahoma Legislature amended the Newborn Hearing Screening Law in the 2000 session to include physiologic screening (Appendix D). The Oklahoma Board of Health passed new guidelines for Newborn Hearing Screening in September of 2000 (Appendix B). A Newborn Hearing Screening advisory panel was appointed by the Commissioner of Health to develop the guidelines and will be working with the Newborn Hearing Screening Program to achieve the goals of this project. The current Newborn Hearing Screening Questionnaire is completed by the health care provider while the infant and mother are in the hospital. The results of the screening are provided to the physician, and the parent is given information regarding follow-up for screening. A copy of the screening questionnaire is given to the parent, a copy to the health care provider, and a copy is sent to the Oklahoma State Department of Health. When the OSDH receives the completed questionnaires, they are divided into at risk and not at risk, are coded and keypunched for entry into the NHS data system in the OSDH mainframe. Families of infants who "refer" on the hospital administered physiologic hearing screening are contacted immediately by the NHSP to assist the family in obtaining a diagnostic evaluation for the baby. For all other infants at risk a notice is mailed to the infant's provider at 3 ½ months of age indicating the possibility of hearing loss. At four months of age, an initial mailing packet containing a computer generated notice and response card is sent to parents of at risk infants. The notice recommends that the family have their infant's hearing evaluated and that such an assessment can be scheduled through the infant's physician, county health department or a speech and hearing clinic. The parent's are requested to complete and return a postage paid response card that indicates the status of the infant's hearing (Appendix E).

The Newborn Hearing Screening Program is administratively located in the Screening and Special Services Division of the Maternal and Child Health Service of the Oklahoma State Department of Health. The Newborn Hearing Screening Coordinator is James G. Schmaelzle, M.C.D., CCC-A who has been the program coordinator since 1988. Mr. Schmaelzle also provides technical consultation to audiologists employed in the Child Guidance and SoonerStart Early Intervention Divisions in the Maternal and Child Health Service. Jennifer Outon is the Administrative Technician who provides clerical support for the Newborn Hearing Screening Program. Ms. Outon has been with the program for one year. The Director of the Screening and Special Services Division is Shari Kinney, RN, MS, who has 10 years of experience with Newborn Metabolic Disorder Screening, Genetics, and the Oklahoma Birth Defects Registry. The Newborn Metabolic Disorder Screening Program, Genetics Program, Lead Poisoning Prevention and the Oklahoma Birth Defects Registry are all administratively located in the Screening and Special Services Division. The Newborn Hearing Screening Program is funded through the Title V Block grant. There are twelve audiologists located in local county health departments who are funded through the Child Guidance and SoonerStart Early Intervention programs who provide follow-up for Newborn Hearing Screening. Edd D. Rhoades, M.D., MPH is the Chief of Maternal and Child Health Services and has been involved with the Newborn Hearing Screening Program since it's inception in 1982. The Maternal and Child Health Service has epidemiologists/program evaluators who work with the programs in MCH to assist them with data analysis and program evaluation. The Newborn Metabolic Disorder Screening Program collaborates with the OSDH Public Health Laboratory to provide the follow-up program for Newborn Metabolic Disorder Screening Program. The NMDSP has a contract with Neometrics to provide the data system for Newborn Metabolic Disorder Screening. Oklahoma first began contracting with Neometrics in 1989 to provide case management and follow-up for Newborn Metabolic Disorder Screening. The Newborn Metabolic Disorder Screening Program and the OSDH Public Health Laboratory have indicated a willingness to collaborate on this project to integrate the two data systems. The Newborn Hearing Screening Program has a stand-alone data system on the OSDH mainframe. Computer programmers in the Information Technology Division of OSDH provide support for this data system, along with the MCH epidemiology staff. A private contractor is used to key punch the newborn hearing screening data. The Oklahoma Division of Vital Records is piloting an electronic birth certificate using Genesis software. This software has a newborn hearing screening module that is not part of the current software being installed in hospitals, but the Division of Vital Records has indicated a willingness to collaborate to add Newborn Hearing Screening.

The Newborn Hearing Screening Program is part of the Screening and Special Services Division in the Maternal and Child Health Service in the Oklahoma State Department of Health (Appendix F - Organizational Charts, Biographical Sketches and Job Descriptions). The Screening and Special Services Division includes the Newborn Metabolic Disorder Screening Program, the Oklahoma Birth Defects Registry, the Oklahoma Childhood Lead Poisoning Prevention Project and the Oklahoma Genetics State Plan and Data Integration Project. The Maternal and Child Health Service includes the Immunization Program, the SoonerStart Early Intervention Program, Children First, Child Guidance, Child and Adolescent Health, the Office of Child Abuse Prevention, Women's Health, and Screening and Special Services. The SoonerStart Early Intervention Program works closely with the Newborn Hearing Screening Program. There are 12 audiologists who work with the Newborn Hearing Screening Program, these audiologists are located in Muskogee (2), Moore, Lawton, Tulsa, Oklahoma City, Enid, Yukon, Claremore, McAlister, Ada and Clinton (Appendix G)). The audiologists receive technical assistance from James Schmaelzle and work in the SoonerStart Early Intervention program and the Child Guidance program.

The Children with Special Health Care Needs Program is located in the Department of Human Services. The CSHCN program works with the Maternal and Child Health Service and has collaborated through a Memorandum of Agreement for the last three years. The physiologic hearing screening equipment that has been provided to hospitals was purchased with funds made available through this agreement. A Memorandum of Agreement is in the process of being signed for this year, and there is a commitment to collaborate with the Newborn Hearing Screening Program ( Appendix H and Appendix I ). The CSHCN program is a resource to fund hearing aids for eligible children who are not eligible for other programs such as Medicaid.

The Oklahoma Health Care Authority is the Medicaid agency for Oklahoma. Hearing evaluation and amplification are available to Medicaid eligible children. The Oklahoma State Department of Health certifies Health Maintenance Organizations. The current requirements for HMO's include the coverage for hearing evaluation.

There are 65 hospitals who have signed a memorandum of agreement with the OSDH for physiologic hearing screening equipment, with 8 hospitals who have not signed agreements. The Oklahoma State Medical Association, the Oklahoma Speech-Language Hearing Association and the Oklahoma Chapter of the American Academy of Pediatrics have all endorsed Universal Newborn Hearing Screening.

The Newborn Hearing Screening Program has a full-time Coordinator, James G. Schmaelzle, M.S., CCC-A and a .75 Administrative Technician (Jennifer Outon). Their positions are funded through the Title V Block grant. There are twelve audiologists who are funded through the Child Guidance Program and the Early Intervention Program who are located in County Health Departments throughout the state. The Child Guidance Program also has Speech Language Pathologists and Child Development Specialists who serve children through age 18. The Early Intervention Program provides services to children 0 to 3 years of age who have disabilities.

The OSDH purchased through funds from the Children with Special Health Care Needs Program physiologic hearing screening equipment to be place in each of the 72 hospitals who have an average birth rate of over 15 babies per year. There are also 21 portable ALGO Portable AABR screeners that have been placed in local county health departments to provide hearing screening for those infants who did not have physiologic screening in the hospital (approximately 2500 children per year are not born in a hospital or that hospital has less than 15 births annually).

The Newborn Hearing Screening Program has a stand alone data system through the agency main frame computer. Data entry for this data system is provided through a contract with a private data management company. The Newborn Hearing Screening Program has a toll-free hotline at the OSDH that is manned during agency business hours with the availability of voice mail after hours for families and providers. The Newborn Hearing Screening Program works with OASIS, which is a 24 hour a day hot-line that provides referrals statewide for families. The Newborn Hearing Screening Program has an advisory group to provide recommendations for the Newborn Hearing Screening Program. This advisory group includes a parent representative, who also works closely with Family Voices. The Oklahoma Genetics Advisory Committee has a Newborn Screening and a Pediatrics Committee who act as an advisory group for Genetic Services.

Support for diagnostic and intervention for children who are referred through the Newborn Hearing Screening Program is provided through the SoonerStart Early Intervention Program, the Child Guidance Program, Medicaid and the Children with Special Health Care Needs Program. There are 18 private providers (Appendix J) who provide infant diagnostic physiologic hearing assessment.

The target population for universal newborn hearing screening is all infants born in Oklahoma, approximately 49,000 per year. The target population for follow-up is those infants referred through physiologic screening and those infants who are high risk based on the risk questionnaire, approximately 5,000 infants per year. The target population for intervention services is those infants identified with hearing loss, approximately 250 per year.

The seventy-two hospitals that have over 15 births per year account for 95% of all births. Once contractual agreements are in place for each of these hospitals to provide physiologic screening, these newborns should be relatively easy to screen. Although all hospitals are currently screening using the risk questionnaire, physiologic screening will take more staff time and require additional training to use the equipment. The 2,500 infants who are born outside the hospital or in a hospital with less than 15 births per year will continue to be screened using the risk questionnaire with recommendations to refer the family to a county health department for the infant to receive physiologic screening. This population will be the most difficult to target as it relies on the parent to get the child to a county health department that has screening equipment for screening. The family may have to drive over 100 miles to have the child's hearing tested. Additionally, infants who are not born in a hospital may be difficult to screen. Oklahoma does not license midwives or lay midwives, so it is difficult to communicate with practitioners who attend home births. One strategy to identify this population is through data integration with the Newborn Metabolic Disorder Screening Program and Vital Records. Through this data integration newborns that have not had hearing screening can be identified and a referral made to the medical provider and the county health department to facilitate screening.

A comprehensive newborn hearing screening follow-up system is needed in order to provide audiologic evaluation to the population of infants who have been screened with electrophysiologic screening and referred and those who have been identified as high risk through the screening questionnaire. In addition to receiving information at birth regarding the need for follow-up for newborn hearing screening, the parents and primary care provider/medical home will receive a letter and information regarding appropriate follow-up based on screening results. The parent and primary care provider/medical home will also be asked to provide the Newborn Hearing Screening Program with the results of the follow-up. If these results are not received prior to the infant's 3rd month, an additional letter will be sent, followed with a phone call. The integrated data system will not only provide information about those infants who have been screened, but will also provide case management software to automate follow-up procedures.

The working relationship with the SoonerStart Early Intervention program is very good, and those infants identified with hearing loss will be referred to this program. There are challenges in providing appropriate amplification for infants, as reimbursement for Medicaid does not always cover the cost. The NHSP will work with Medicaid, HMOs, insurance companies and CSHCN to identify solutions for these problems.

The most recent complete data from the Oklahoma Newborn Hearing Screening Program (NHSP) is from 1997 (Appendix K). The past three years have been transitional from a program based on a risk questionnaire to a program that includes physiologic screening. According to Oklahoma Vital Statistics, there were 48,160 live births in 1997. Based on data from the Oklahoma Newborn Hearing Screening Program Risk Registry 94.3% (45,415) of all births were screened in 1997 using the risk questionnaire, with 10.6% (5,127) identified as at risk. Of these, the NHSP received report of evaluation from 29% (1,487), information regarding evaluation was not provided on 71% (3,640). The reports received by the NHSP reported that 89% were normal, 2% were abnormal and 10% were inconclusive. The reports received indicating that the infant's hearing was evaluated also indicate who performed that evaluation. Speech Language Pathologists evaluated 17%, Physicians 17%, Hospitals 9%, Audiologists 7% and Other 50% ("Other" could include the parent indicating that the child's hearing is normal). These data indicate several areas for intervention to be addressed by this proposal. In 1997 data indicate that 94.3% of infants were screened. This percentage is below the Healthy People 2010 and JCIH target of screening all infants, and the target for this project that is 97%. These infants were screened using the risk questionnaire, not a physiologic screening method. In 1997 two hospitals on their own purchased equipment and began universal hearing screening and OSDH received funding from CSHCN to purchase some physiologic screening equipment. In 1998 received additional funding from CSHCN for equipment and the NHSP began working with hospitals to provide them with physiologic screening equipment and put in place a Memorandum of Agreement with each hospital with over 15 births per year to provide universal newborn hearing screening. At the end of 1999, thirty-one hospitals were providing universal newborn hearing screening. The data from 1999 is incomplete. Preliminary data on physiologic screening for 1999 with 31 hospitals reporting screening results indicates that approximately 30% of the births were screened using physiologic screening. Of the infants screened, 4.3% were referred based on results of the physiologic screening. Incomplete data from 2000 indicates 76% of infants have been screened using physiologic screening. As of December 1, 2000, 65 out of 72 birthing facilities with more than 15 births per year have implemented universal newborn hearing screening. These facilities represent 94% of all births in the state. An integrated data system with a follow-up component is needed to provide data as to whether all infants are screened, and automate the follow-up for infants who are referred or at risk for hearing loss. The data system that collected the 1997 data is on the OSDH mainframe and is the original program written in 1983. The OSDH mainframe is in the process of being phased out, with data systems being transferred to network servers. This data system would need significant modification to adapt it to a Windows environment, and to add additional follow-up protocols for electrophysiologic screening. This system is also not very amenable to integration with other systems. For this reason the NHSP has been working with the Newborn Metabolic Disorder Screening Program and Vital Records to develop an integrated database to better track and follow-up infants screened through the NHSP. This data integration will also help identify infants who have not been screened. Another need that is apparent from these data is lack of follow-up information from families and providers. The current system sends out a response card that refers from the physiologic screening and/or the risk questionnaire. The family is to send the card to the NHSP with the result of the infant's evaluation. Due to the large number of infant's who referred through the risk questionnaire (over 5,000) there have not been resources available to track each of the infant's and determine if their hearing was evaluated. An automated follow-up system will provide an opportunity to provide comprehensive tracking and follow-up services.

The SoonerStart Early Intervention Program stipulated by Public Law 101-476, Part C serves Oklahoma infants and toddlers with developmental delays from birth through 36 months. This program provides services to an average monthly caseload of 2,722. The data from this program does not provide information on how many children are served by SoonerStart who have a hearing loss. As an estimate, in Oklahoma county, the largest county in the state, out of a caseload of 565, 14 children had an established hearing loss (about 2.5%). There currently is not system to communicate to the NHSP regarding how many children with hearing loss receive services. Part of this project will be to work with SoonerStart to develop a system to provide follow-up information to the NHSP program.

Public Law 105-17 legally mandates the provision of special education services through the Individuals with Disabilities Act (IDEA-B), Part B. The Oklahoma State Department of Education receives all official records on children receiving special education services in the state. For the School year 1998-1999, 80,292 children between the ages of 3 and 21 years received special education services. Of these 0.6% (478) received services for hearing impairment.

The Child Guidance Division and the SoonerStart Early Intervention Division of the Maternal and Child Health Service fund 12 audiologists through out the state (Appendix G). Three of these positions are currently vacant, it is very difficult to recruit audiologists in rural areas and the state does not pay as well as a private practice. These audiologists provide diagnostic and intervention services to any client regardless of ability to pay, but county health departments do not have diagnostic hearing equipment to evaluate infants. There are 26 screening ABRs and 25 OAE screeners located in county health department (Appendix G) to do follow-up screening or initial screening on infants not born in a birthing facility or born in a facility with less than 15 births per year. Oklahoma has 130 licensed audiologists located primarily in metropolitan areas. There are 19 facilities in Oklahoma that provide infant diagnostic physiologic hearing assessment. Seven of these will accept Medicaid clients (Appendix J). These providers are located primarily in metropolitan areas, with the area most underserved in the western part of the state. In order to provide diagnostic evaluation to infants who refer based on physiologic screening, there is a need for more providers who can provide diagnostic and follow-up services.

The Children with Special Health Care Needs Program does fund audiology services to children who qualify but do not have data regarding the number of children served with hearing impairment. The Oklahoma Health Care Authority (OHCA) has a contract with OSDH to reimburse for Hearing evaluation, audiometry and earmolds through EPSDT and SoonerStart Early Intervention. OHCA will also reimburse audiologists for hearing aids, based on an allowable reimbursement per CPT code. OHCA has no data available as to how many children have received these services.

The Oklahoma Newborn Hearing Screening Program was developed in response to a need to identify infants with hearing loss as early as possible. An advisory group composed of more than 25 audiologists, speech-language pathologists, physicians, nurses, educators, parents, deaf adults made recommendations to the Board of Health in the establishment of the program. In 1989 the NHSP collaborated with Project ECHO (Enriching Children's Hearing Opportunities) to provide services to children with hearing loss. This program was initiated by the Oklahoma State Department of Education and provides training to audiology service providers. The SoonerStart Early Intervention Program was established during this same time period through a State Agency, the Oklahoma Commission for Children and Youth (OCCY). A subcommittee of OCCY was established, the Interagency Coordinating Council for Early Intervention (ICC). The ICC was developed to consult on all services delivered to families of infants and toddlers identified with developmental delays, including hearing impairment. The ICC continues to serve as an advisory group for intervention services to infants with hearing loss. OSDH has representation on this council, and through it collaborates with other state agencies in the provision of services for children with hearing loss (Appendix L). In 1996 Oklahoma became one of 17 states to receive assistance for implementing universal newborn hearing screening from the Marion Downs National Center. NHSP staff and SoonerStart Early Intervention staff received training through this assistance. The assistance from the Marion Downs National Center also included technical assistance in the planning phase for Universal Newborn Hearing Screening. Some of the planning activities included surveying the state audiologists and the School for the Deaf in Sulfur, Oklahoma. A major obstacle in the implementation of universal newborn hearing screening was funding to provide screening equipment to hospitals and birthing centers. The OSDH and the DHS Children with Special Health Care Needs program began collaborating in 1998 to provide physiologic screening equipment to Oklahoma hospitals with an average of more than 15 births per year. The CSHCN also provided funding for audiologists to work with hospitals to train hospital staff and negotiate Memoranda of Agreement to provide universal newborn hearing screening. In January of 2000 an advisory group composed of audiologists, speech-language pathologists, physicians, educators of the deaf and a consumer representative was established through the Commissioner of Health to update the OSDH rules for Newborn Hearing Screening. Also at this time, State Senator Herbert Rozell introduced SB 1474 requiring that the state implement universal newborn hearing screening. Passage of this law was a collaborative effort between the OSDH, the Senate staff, and the Oklahoma Speech-Language-Hearing Association. This bill was subsequently passed, and the State Board of Health passed new rules based on the recommendations of the advisory committee in September of 2000. Subsequent to the Board of Health approving new rules for NHS, three task forces were established to assist in the implementation of universal newborn hearing screening. A 23-member audiology task force was established with membership including audiologists, speech-language pathologists, and consumer. The objectives of this group are to develop protocols for audiologic assessment and hearing aid fitting, develop guidelines for audiologic monitoring, and address current practice issues. A 16 member Early Intervention task force was established with membership including Speech-Language Pathologists, Audiologists, the SoonerStart Coordinator, the Child Guidance Director, a representative from the State Department of Education, and a nurse. The objectives of this group include the development of a plan that assures that all children diagnosed with a hearing loss receive appropriate services in a timely manner. A twelve member Newborn Hearing Screening Task Force has participation from Speech-Language Pathologists, Legislative Liaison, nursing, and a manufacturer representative .The objectives of this task force include development of appropriate protocols for implementation, data management and follow-up for universal newborn hearing screening (Appendix H).

Goal 1: Using a physiologic method, screen the hearing of 97% of Oklahoma newborns prior to hospital discharge or within the first month of life.

Objectives:

• Birthing facilities with a two-year average birth census of 15 or greater will provide physiologic hearing screening and risk factor screening for each infant prior to discharge by June 30, 2001. Screening equipment will be available to these birthing sites at no cost.
• Birthing facilities with a two-year average birth census of fewer than 15 will provide risk factor screening and physiologic hearing screening when such equipment is available for all births. Caregivers will be directed to regional sites where physiologic screening is available and encouraged to have the infant's hearing screened within the first month of life if physiologic screening is not available in the hospital by June 30, 2001.
• Provide consumer and provider education about newborn hearing screening by March 30, 2002.
• Integrate Newborn Hearing Screening Program (NHSP) and Newborn Metabolic Disorder Screening Program (NMDSP) in order to identify infants who have not been screened by March 30, 2002.
• Integrate NHSP, NMDSP, and Vital Records databases by March 30, 2004.
• Continue to utilize a statewide infant hearing advisory committee to make recommendations for the NHSP; the advisory committee will meet a minimum of four times per year.
• Update and expand NHSP procedural manual by March 30, 2002.

Objectives:

• The infant's health care provider will be provided results of newborn hearing screening prior to discharge and will discuss these results with the family by March 30, 2002.
• The infant's health care provider will be notified by mail prior to one month of age if the infant was referred for evaluation as a result of physiologic screening or if the infant was identified as high risk by the risk screening questionnaire by March 30, 2002.
• The infant's health care provider will be provided with the results of any diagnostic hearing assessments performed on infants referring for the newborn hearing screening program by March 30, 2002.

Objectives:

• Work with the NHSP Audiology Task Force to develop appropriate infant audiologic assessment protocols to be completed by May 31, 2001.
• Work with the NHSP Audiology Task Force to develop appropriate infant amplification protocols to be completed by July 31, 2001.
• Provide diagnostic auditory evoked potential equipment and appropriate training to audiologists located in regional county health departments by March 30, 2003.
• Work with other public and private audiologists to provide appropriate diagnostic evaluations by December 31, 2001.
• Work with the Oklahoma Health Care Authority (OHCA) and other insurance groups to provide reasonable reimbursement for both hospital hearing screening and hearing diagnostic assessment by March 30, 2002.
• Parents and health care providers of infants who refer on the hospital physiologic screen will be provided recommendations for follow-up prior to hospital discharge.
• Develop a case management system using integrated data bases (NHSP and NMDSP, to identify infants who need further evaluation by March 30, 2002 adding Vital Records by March 30, 2004.

Objectives:

• The NHSP will provide each family with the toll free number to the statewide referral program for individuals with special needs (OASIS ) while still in hospital by March 30, 2002.
• The NHSP will provide family support information to the infant's care giver with NHSP follow-up correspondence by March 30, 2002.
• The NHSP will ensure care giver/consumer representation on the screening, early intervention, and audiology task forces by June 30, 2001.

Objectives:

• The families of all infants who are referred based on physiologic screening in the hospital will be referred to early intervention services at the time of discharge by March 30, 2002.
• The SoonerStart Early Intervention Program and other early intervention programs will provide the Newborn Hearing Screening program with follow-up information regarding children referred who enrolled in the program by March 30, 2004.

For Year 1 of the project ( March 31, 2001 through March 30, 2002) travel in the amount of $1,000 is requested to send the coordinator to the grant designated meeting in Washington, D.C. The guidance indicates that this travel should be included. Funds are requested to purchase three diagnostic ABR Audiometers, a total of $66,000 at $22,000 each. These diagnostic audiometers are to be placed in county health departments that have audiologists, so that these audiologists can perform diagnostic hearing evaluations for infants who are referred through the physiologic screening or high risk screening performed by the birth facility. In the first year, it is proposed that these be placed in Muskogee, where there are two audiologists in the county health department, one in Moore, where there is one audiologist and one in Lawton, where there is one audiologist. A total of $85,000 is requested to fund the expansion of the newborn metabolic disorder screening data system to add a newborn hearing screening module. The proposed vendor for this expansion and integration is Neometrics. Neometrics currently provides data services to the Oklahoma Newborn Metabolic Disorder Screening Program. They are also experienced in working with Newborn Hearing Screening Programs as evidenced in Tennessee. Funds in the amount of $9,000 are needed to reprint the Newborn Metabolic Disorder Screening Form to include the Newborn Hearing Screening questionnaire. Approximately 100,000 forms will need to be printed and this amount will pay for part of the cost, with the total cost estimated to be $15,000. No indirect cost is requested, as there is no request for salaries in this proposal. Existing resources necessary for this project includes the project director, project coordinator, and administrative technician. Edd D. Rhoades, M.D., MPH, the Chief of Maternal and Child Health will fulfill the responsibilities of project director. James G. Schmaelzle, M.S., CCC-A who is the Newborn Hearing Screening Coordinator, will fulfill the obligations of Project Coordinator. Jennifer Outon will provide the clerical support for the project. Funds awarded for this application will be used only for activities described in the application. The OSDH is in compliance with required fiscal and accounting procedures.

Goal 1: Using a physiologic method, screen the hearing of 97% of Oklahoma newborns prior to hospital discharge or within the first month of life. The methodology for Goal 1 will be to work with Oklahoma hospitals, birthing centers and birth attendants to insure infants are screened. The first objective to accomplish this goal is to provide physiologic hearing equipment to hospitals that have more than 15 births per year. This equipment has already been purchased using CSHCN funds, and agreements have been negotiated with 65 facilities to provide universal newborn hearing screening. These facilities represent 94% of the annual birth census. The passage of SB 1474 (effective November 1, 2000) which mandates universal newborn hearing screening and the passage of new rules by the Board of Health (September 21,2000) should be helpful in accomplishing this goal. As part of this project, the remaining 8 hospitals who have an annual birth census of greater that 15 will be approached by the NHS Coordinator to implement universal newborn hearing screening. The manufacturers clinical educator and an OSDH audiologist will provide training in the use of the screening equipment. The second objective in accomplishing this goal involves working with hospitals that have a birth census of less than 15 per year. These hospitals are already providing screening using the risk questionnaire and will need to add referral to a regional screening center. Another method employed in screening infants will be to work with birth attendants to insure that out-of-hospital births are screened. The third objective of providing consumer and provider education will be accomplished through multiple methodologies. An initial activity will be to update the Newborn Hearing Screening pamphlet that is provided to all parents at the birth of a child. Other methodologies that will be used will be providing presentations to hospitals and birthing facilities, presenting to birth attendants, developing articles for professional journals and newspaper articles and working with professional and parent organizations. The methodology to accomplish the fourth objective will be to work with a contractor (Neometrics is the proposed contractor) to develop the integrated data system for Newborn Metabolic Disorder Screening and Newborn Hearing Screening. Neometrics has already worked with several states, including Tennessee to integrate Newborn Hearing Screening with Newborn Metabolic Disorder Screening. A work group will be established through the Oklahoma Genetics Advisory Council with representation from the Newborn Metabolic Disorder Screening Program and the Newborn Hearing Screening Program to facilitate this integration. Once the integration of the Newborn Hearing Screening Program and the Newborn Metabolic Disorder Program has been accomplished, the advisory group will work to integrate this database with Vital Records. The Newborn Hearing Screening advisory committees and the Oklahoma Genetics Advisory Council will be used to develop recommendations for the NHSP Program and develop protocols and procedures for follow-up. A critical component of this data integration process is to insure that proper informed consent is received in order to share data between the Newborn Metabolic Disorder Screening Program, the Newborn Hearing Screening Program and Vital Records. State law mandates all three of these programs, and OSDH has the responsibility to implement these programs. In addition to input from the NHSP/NMDSP advisory groups, the data integration procedures will be reviewed by OSDH legal to insure that data integration is within the legal mandate of the program. Both of the screening programs provide for refusal of screening on the basis of religious objection. Part of the follow-up protocol will be a report form to be completed by the audiologist, primary care physician/medical home, parent and SoonerStart Early Intervention. These report forms will be reviewed by OSDH legal and the audiology task force to insure that client confidentiality is protected. The NHSP will use Section F. Protection of Infants' and Families' Rights from the Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs as the basis for the data system.

The primary methodology to achieve the second goal, to link the NHSP to the infant's medical home will be through the integrated database. The combined data collected for the integrated newborn screening database will include the information on the infant's medical home. This information will then be used to provide follow-up with the infant's medical home. Information will be provided at the time of birth and at intervals of one month and three months regarding the need for follow-up and results of follow-up. The methodology to accomplish the third goal, to assure access to comprehensive audiological assessment of infants referring on hearing screening before three months of age will be primarily through the NHSP Audiology Task Forces. The Task Forces will address the issues of assessment protocols, amplification protocols, provision of appropriate evaluations, reimbursement issues, follow-up recommendations and development of a case management system. The advisory committees will use the Year 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs by the Joint Committee on Infant Hearing as a basis for the development of protocols. The purchase and provision of diagnostic equipment to county health departments will assist in insuring that there is access to evaluation. The manufacturer's clinical educator will provide training on the use of the diagnostic equipment. The methodology to accomplish the fourth goal, to assure access to family support for caregivers of infants with hearing loss will be accomplished through collaboration with family support groups such as Family Voices, and use of consumers on task forces. The fifth goal, to assure access to early intervention services by six months of age will be accomplished through referral and collaboration with the SoonerStart Early Intervention program.

PROJECT ACTIVITIES TIME ALLOCATION TABLE
Project Title: Oklahoma Universal Newborn Hearing Screening Project
Project Director: Edd D. Rhoades, M.D., M.P.H.
Budget Period: 3/31/01-3/30/05

Evaluation Plan

The outcome measures for this project are related to the goals of the project and are as follows:

• Percent of Oklahoma newborns screened using a physiologic method within the first month of life. This outcome will be measured using the integrated Newborn Hearing Screening/Newborn Metabolic Disorder Screening database. Complete data will not be available in the first year of the project. In the third year of the project, this database will be integrated with the Vital Records database, which will provide more complete data as to the percentage of infants screened as the NHSP/NMDSP data can be matched with the electronic birth certificate data.
• Percent of infant's screened who are referred for further evaluation. This measure will be evaluated through the NHSP/NMDSP integrated database follow-up data.
• Percent of infants referred for further evaluation that receive audiologic evaluation, the age they were evaluated, and that the evaluation is reported to the NHSP. This measure will be evaluated through the NHSP/NMDSP integrated database follow-up data.
• Percent if infants evaluated who have hearing loss and that information is reported to the NHSP. This measure will be evaluated through the NHSP/NMDSP integrated database follow-up data.
• Percent of infants were referred to SoonerStart Early Intervention for hearing loss. This measure will be evaluated through the NHSP/NMDSP integrated database follow-up data.
• Percent of infants who receive SoonerStart Early Intervention services for hearing loss and the age which they were enrolled. The NHSP and SoonerStart Early Intervention program will collaborate as part of this project to develop data linkage to determine this data.
• Percent of infants who are referred for audiologic evaluation who can be identified with a primary care provider/medical home. This measure will be evaluated through the NHSP/NMDSP integrated database follow-up data.