Tennessee MCHB 2001 Grant Project

Project Title: Universal Newborn Hearing Screening and Initiative
Project Number: 93.251
Project Director: Jacque Cundall, BSN
Phone: (615) 741-0310
Organization Name: TN Department of Health, Children's Special Services
Address: Maternal and Child Health, Cordell Hull Building 425 5^th Ave North, 5^th Floor, Nashville, TN 37247-4750
Contact Person: Jacque Cundall, BSN
Phone: (615) 741-0310
Fax: (615) 741-1063
E-mail Address: jcundall@mail.state.tn.us
Project Period: 4 Years
From: March 31, 2001 to March 30, 2005

Organizational Setting: The Tennessee Department of Health, Maternal and Child Health Section, Children's Special Services (CSS) Program (Title V CSHCN) will be responsible for the state's Universal Newborn Hearing Screening Initiative. The project director, is Jacque Cundall, BSN, Newborn Hearing Screening Program Nurse Consultant.

Purpose: The Universal Newborn Hearing Screening (UNHS) Initiative will implement a sustainable statewide UNHS program in Tennessee. The system will coordinate birthing hospitals, audiologists and early intervention services to assure that all babies born in Tennessee receive newborn hearing screening prior to hospital discharge or prior to one month of age, receive audiologic assessment prior to 3 months of age and enter intervention services by six months of age. All services will be coordinated through the child's Primary Care Provider (PCP)/Medical Home. The system will include a statewide advisory committee with parent representatives, representatives from the hearing impaired community, hospital screening programs, and hearing and audiological professtionals. A formal referral, follow-up and data collection mechanism is integrated into the existing Metabolic/Genetic Newborn Screening Neometrics data system and will analyze program impact and client outcomes.

Challenges: Tennessee does not have a state mandate to require newborn hearing screening or requiring hospital to report screening. There is now a centralized surveillance system to compile data from hospitals on the number of infants that received hearing screening or referral. There is now a system to track infants diagnosed with hearing loss nor to track that they have obtained intervention services. However, the data reporting system is not fully operational.. The comprehensive system to compile outcome data to measure the effectiveness of early identification and to collect and report data to the CDC Early Hearing Detection and Intervention System is not complete at this time. State constraints on the implementation of contract for personnel have delayed planned statewide training.

Goals and Objectives: The goal of the Universal Newborn Hearing Screening Initiative is to establish and implement a sustainable, integrated hearing screening service for all babies born in Tennessee prior to hospital discharge. Objectives: 1) Implement a standard protocols for screening, assessment and intervention. 2) Develop and initiate a public awareness and training plan for professionals and consumers. 3) 95% of all infants born in Tennessee will receive a hearing screening prior to discharge from the hospital 4) 95% of children identified with a suspected hearing loss will receive an audiologic/diagnostic assessment by 3 months of age 5) 95% of infants diagnosed with a hearing loss will receive intervention services by six months of age and 6) Parent and consumer participation will be evident in all aspects of program development.

Methodology: The program will develop standards and protocols to implement hearing screening utilizing physiologic testing (OAE or ABR) in all birthing hospitals. The program will develop a data collection system to assure referral to the medical home, notification of families of the need for re-screening, audiologic assessment and early intervention services. The existing MCH genetic newborn screening data collection and tracking system has been expanded to capture hearing screening data and make appropriate referrals to the medical home, family, and to the IDEA, Part C, Tennessee Early Intervention System (TEIS). The TEIS service coordinator will contact families to assure they return for re-screen or audiologic assessment as part of Child Find activities. TEIS will enroll all children identified with a hearing loss to receive early intervention services. Infants identified with a hearing loss will then be referred to the CSS program to determine eligibility for assistance with medical services, equipment and care coordination. Infants will be eligible for enrollment in Tennessee Infant Parents Services (TIPS ) to provide hands on intervention services. TEIS/TIPS will collect profile data to determine dates of early identification, assessment, early intervention, and long-term outcomes to the CSS program via the TEIS child find data collection system. The CSS program will coordinate the reporting of state data to the CDC National Early Hearing Detection and Intervention (EHDI) data base in cooperation with the CDC EHDI grant. The Universal Newborn Hearing Screening Task Force of professionals and consumers will guide program development.

Evaluation: Hospital screening data will be evaluated to determine referral rates; those identified with a large number or very small number of referrals will be evaluated to assure compliance with protocol, accuracy of screening methods, equipment and skill level of screeners. Data reported to TEIS by audiologic assessment providers will be collected and analyzed through collaboration with TEIS qualitative data for child find. Profiles on children will evaluate the long-term outcomes in regard to the effectiveness of early identification of hearing loss in the prevention of developmental delays. Profiles and data evaluation will be coordinated with the CD EHDI grant and the state's Genetic Planning Grant.

Text of Annotation: This project will implement a sustainable statewide UNHS program to screen, assess and treat infants with hearing loss. A network of providers and collaborators will support program activities. Data collection systems will provide accurate project and client information to measure outcomes.

Key Words: Audiology, Communication Disorders, Data Collection, Data Systems, Deafness, Family Support Programs, Hearing Disorders, Hearing Loss, Hearing Screening, Hearing Tests, Interagency Cooperation, Maternal and Child, Medical Home, Newborn Screening, Professional Education in Communication Disorders, Professional Education in CSHN, Professional Education in Genetics, Sensory Impairments, Title V Programs.

PROJECT NARRATIVE

Organizational Experience and Capacity: The Maternal and Child Health Section of the Tennessee Department of Health (TDH) is responsible for four major program areas within the Bureau of Health Services. These programs are: Women's Health Services, Genetics and Newborn Screening Services, Child and Adolescent Health Services and Children's Special Services for CSHCN (CSS). Organizational charts for the Department, the Bureau and the MCH section are contained in Appendix A.

In November 1996, the CSS Program coordinated the state's universal newborn hearing screening initiative in cooperation with the 18 state Title V CSHCN programs participating in the SPRANS grant administered by the University of Colorado, Marion Downs National Center. The CSS Program will continue to be responsible for the state's universal hearing screening efforts and has well established working relationships with the programs referred to in this application. A voluntary multidisciplinary UNHS Task Force was established to plan, direct, guide and advocate for a statewide system. The efforts of this group in completing needs assessment activities, providing professional and consumer awareness, developing a three year plan resulted in an increase, from nine to twenty-eight, birthing hospitals providing physiologic hearing screening on a voluntary basis. There is growing public and professional awareness about the importance of infant hearing screening as a result of UNHS Task Force members presentations to groups such as the TN Academy of Pediatrics, the CSS Advisory members, the Perinatal Advisory Committee, Regional Health Officers, Medical Advisory Committee, nursing groups, Tennessee Association Audiologists and Speech/language Pathologists, A.G. Bell and many parent groups and organizations such as Family Voices. Materials were provided to hospitals and others included copies of the 1997 TN state plan for newborn hearing screening, a hearing loss fact sheet, hearing screening methods, techniques, cost, reimbursement, parent consent and issues, research articles, professional organization position statements and early intervention referral sources. Periodic updates were provided of a listing of hospitals by region that offered universal, high-risk or no screenings as well as the percentage of total state births per hospital. This list compared screening availability by the three grand regions of the state and demonstrated that the West TN area had a higher standard of care for hearing screening. Hospitals providing universal programs were issued a certificate of recognition. Although TN was able to provide a staff position of less than 15% time dedicate to newborn hearing screening, a good framework for the system has been developed. Legislation for mandatory newborn hearing screening was proposed to the legislature in 1998 by did not pass. Legislation may again be submitted during the legislative period beginning January 2000. The successful efforts of the needs assessment and public awareness has the result of an extremely beneficial system change. Effective by the year 2003, all TennCare Managed Care Organizations (MCOs) will be required to implement physiologic newborn hearing screening prior to discharge to comply with Early Periodic Screening Diagnosis and Treatment (EPSDT) guidelines issued November 15, 1999. (see Appendix B)

The CSS program has experience with the referral and follow-up system required by the MCH Genetics and Newborn Screening Program (NSP) for PKU, Sickle Cell Disease, Congenital Hypothyroidism and Galactosemia. The NSP has a well-developed Neometrics data collection and reporting system. MCH has concentrated on refining the technology that supports the identification and tracking of infants for the NSP to include newborn hearing screening. The NSP recently received a SPRANS grant to document short term and long term outcomes of children diagnosed with the above disorders. A component of the grant is directed to strengthen the formal link to the CSS program to assure referrals for care coordination to assist infants and families in complying with care. These activities enhance the goal to screen children early and continuously for special health care needs. The CSS Program has also redirected services to offer care coordination services to a greater number of children with special health care needs to assist families in accessing supportive services and comprehensive health care through a medical home and managed care. The hearing screening initiative will link the NSP to CSS field staff and to the TEIS Part C, Tennessee Parent Infant Services (TIPS). Intervention services will be provided in the family's community as much as possible.

4.2.3 Administration and Organization: The Department of Health was one of the first departments established by state mandate and local health departments are required in all ninety-five (95) counties. The Central Office operates programs and services through a regional and county health department structure. There are seven (7) rural regions consisting of 89 county health departments and six (6) metropolitan regions, each consisting of a single county health department operating in the urban areas. Services for women and children have always been a major part of local health department activity. (See appendix A)

The Genetic Newborn Screening Program (NSP) is located in the MCH section and has a strong working relationship with county public health nursing staff to provide tracking of infants identified with metabolic problems requiring re-screening and confirmatory evaluation. The infant's primary care physician (PCP)/medical home, family, local health department and the tertiary genetic or sickle cell center is notified by NSP to assure that the infant obtains care as soon as possible.

The Children's Special Services Program (CSS) is also in the MCH section. MCH and CSS have played an increasingly important, although often changing role, in providing services and funding for the county health department system, including services for children with special health care needs (CSHCN). The CSS program staff work in conjunction with other TDH programs, contract agencies and other state agencies involved with children with special health care needs. CSS central office staff serves as a representative on the Department of Education, Early Intervention Part C Interagency Coordinating Council with members from special education, Head Start, Mental Health/Mental Retardation, Human Services, Vocational Rehabilitation, and parents of special needs children. CSS central office and field staff participate as board or committee members on the Developmental Disabilities Council, Family Voices, regional and county health planning councils, March of Dimes, child development centers, daycare centers, school boards, Protection and Advocacy, Tennessee Technology Access Project, ARC, TEIS, TREDS (for children with dual vision/hearing disabilities), Head Start, TIPS, and others that involve care, service and advocacy for children with special health care needs. Members participate on many systems building initiatives with the Divisions of Mental Health and Mental Retardation, Vocational Rehabilitation, Department of Children's Services (justice system and foster care), and Department of Human Services (TANF- Families First). Key players from the agencies serve on many of the same committees which provides for frequent communication and collaboration that contribute to development of a seamless coordinated system of services for children with special health care needs. In relation to agencies roles in the provider network for TEIS, a Multi-agency Memorandum of Agreement with the Department of Education is the final stages of development.

In 1994, when the State's managed care system, TennCare, was implemented to replace Medicaid, the MCH role changed once again, but did not diminished in importance. Direct services in all traditional areas of public health are still provided through local health departments, although on a more limited basis. Persons enrolled in TennCare are assigned a PCP through their managed care organization are encouraged to use that provider. New roles for local health department staff are developing, especially in relation to advocacy, outreach and follow up with patients enrolled in the TennCare system. The county health departments and service providers have become more flexible and responsive to the unique needs of county residents since the managed care system is so varied across the state. Public-private partnerships are emerging to assure that health care needs are met. TennCare MCOs now provide health care coverage for almost 50% of the babies born in Tennessee. Approximately 97% of infants and children enrolled in CSS are also enrolled in TennCare or another insurance plan. Prior to TennCare, the CSS Program served as the medical home for many special needs children that did not have health insurance, or were covered under the Medicaid program. With the introduction of TennCare, the program now emphasizes care coordination and advocacy on behalf of the patient and family to assure that each child utilizes the assigned PCP as the medical home for comprehensive care. The medical service component of the CSS program provides reimbursement for services that may not be covered by insurance and some services denied by insurance but deemed medically necessary by the child's specialist and PCP in consultation with the CSS Program. Pursuant to medical necessity and financial guidelines, the CSS Program provides reimbursement for therapies and supplies when TennCare or other insurance annual limits or prior authorization limits have been reached. The expansion of TennCare eligibility in 1998 to age 19 and up to 200% of the Federal Poverty Guidelines (FPG) for uninsured children, allows more children, including those with special health care needs, to access health care coverage.

The CSS program increased the financial eligibility for the medical services component to 200% FPG in May 1999. The Care Coordination component was expanded at that time to a target population of TennCare children with special health care needs that did not meet the requirements to receive the medical services component. The third and very important component of CSS is that of the Parent's Encouraging Parents (PEP) program. The PEP program is staffed by nurses, social workers and parent of special needs children to provide family support and to link families of children with similar special needs. PEP staff are active in the community and serve as a resource for community awareness.

The CSS Advisory Committee, which has statewide representation, will provide overall guidance and consultation for development of an integrated system for infant hearing screening. The UNHS Task Force will continue as special statewide work group for this project. Three participants are parents of hearing impaired children. Other members include individuals of the hearing impaired community, and professionals and consumers from business, education, early intervention, audiology, speech language pathology, hospital administration, pediatrics, and neonatology. Additional members and consultants, such as representatives of otolaryangology, have been invited to participate. (see Appendix A)

4.2.4 Available Resources: Since the CSS Program is an integral part of MCH, program operation costs and equipment needs are already provided. Office space for all staff is provided and there is additional office space available for the two consultant positions proposed. State System Development Initiative (SSDI) funds made available through MCH, have been used over the past five years to upgrade and develop the hardware and software capacity of the MCH program. Funds have also been used to purchase and install the Patient Tracking, Billing, and Management Information System (PTBMIS) used by local health departments. All patient information is linked to the Central Office mainframe through the regional health office. The NSP is now installing a case management software package and will soon be encouraging birth hospitals to install an electronic birth page (EBP) to improve the accuracy of birth certificate information. The electronic data management systems will reduce labor intensive case follow-up activities and permit integration of case specific information for the proposed project.

The MCH Block Grant provides the funds for CSS. Approximately $4,125,000 of state and federal funds secured through this block grant support Central Office activities and fund the regional and local health department staff who provide services to CSS enrolled children, and purchases services, supplies and equipment for individuals. Care coordination and services are documented in the Case Management system contained in PTBMIS, the electronic data system described above.

The CSS program and the TIPS program (a TEIS provider) will provide existing staff resources for care coordination and intervention services to infants identified through the screening and treatment process. In addition, infants who are financially eligible will be enrolled in the CSS medical services component. (see Appendix A)

The Director of the CSS Program, Jacque Cundall, R.N., BSN, will serve as the Project Director for this grant. In addition, the MCH/CSS program will provide a Nurse Consultant 2 to serve as the Newborn Hearing Screening Program Coordinator. MCH/CSS will contract with an audiologist for 20 hours week on a consultant basis. The project will also contract with a Child and Family Consultant (30%) to assure that child and family needs are addressed in the system design. The person filling this position will be the parent of a child with hearing loss. The project anticipates expanding the role and responsibility of this consultant over the duration of the grant. Additional information about the role and responsibilities of these proposed consultant is contained in 4.2.9 " Required Resources" section of this application. Job descriptions and CVs for proposed staff are contained in Appendix C.

Identification of Target Population and Service Availability: The target population for screening is all births in the state and is projected to be 75,000 for each year of the grant. Using the national estimate that 1 - 3 percent of the children have hearing impairments, 750 to 2,250 of Tennessee's children each year are at risk for hearing loss. The project will access available resources when cultural/language barriers need to be addressed to complete assessment and intervention with infants. The CSS program provides or coordinates speech and hearing services in all regions.

Tennessee covers 41,220 square miles of land area and is approximately 500 miles from east to west and 110 miles from north to south. Topographically, as well as culturally and economically, the state is divided into three grand regions. East Tennessee is a 35 county area, containing the Appalachian Mountains and bordered by Virginia, Kentucky, and North Carolina. This region contains Knoxville and Chattanooga, the state's third and fourth largest cities, respectively. Johnson City, with a population over 50,000, is located in the extreme upper east end of the region and is the location of East Tennessee State University (ETSU) and the Quillen-Dishner School of Medicine. The University of Tennessee - School of Medicine in Knoxville and Erlanger Hospital in Chattanooga provide tertiary care for citizens in their respective areas. All three medical facilities have tertiary care obstetric services and have regional facilities for speech/language assessment and treatment. Maryville College has a Sign Language Interpreting Department. The Tennessee School for the Deaf is located in Knoxville and houses the TIPS central office. CSS, TEIS and TIPS offices are located in the three major cities in the grant region. Ten hospitals in this region provide universal hearing screening to 16.5% of the birth population.

Middle Tennessee encompasses 39 counties and is bordered by Kentucky, Alabama, and Georgia. The topography ranges from mountains in the east to the Tennessee River on the western edge. Nashville, the capital and second largest city, and two other cities with populations over 50,000 are located in this region: Clarksville, home to the Fort Campbell military base; and Murfreesboro, home of Middle Tennessee State University. This region has Meharry Medical School and Vanderbilt University Medical Center providing tertiary health care services for obstetrics and a variety of facilities for speech/language assessment and treatment. Other hearing related agencies include the Vanderbilt Developmental Center, the Bill Wilkerson Speech and Hearing Center, Brentwood Hearing Center and other private providers. CSS, and TEIS offices are located in the three major cities in the region and TIPS offices are in two cities. Seven hospitals provide universal newborn hearing screening to 8.5% of the birth population.

The western part of the state has 21 counties and is bordered by the Mississippi and Tennessee Rivers and the states of Mississippi, Missouri, Kentucky, and Arkansas. This area is part of the Delta, or Gulf Coastal Plain, and is very flat, rural, and sparsely populated, with the exception of Memphis, the state's largest city, and Jackson (population 52,300). The University of Tennessee - Memphis Medical School provides tertiary services and special services are offered through the Boling Center for Developmental Disabilities - an affiliate of the Medical School's Pediatric Department, and other private speech/language assessment and intervention services. Other programs in this region include the Memphis Oral School for the Deaf, the Shea Clinic Cochlear Implant Program, and the West Tennessee School for the Deaf. CSS and TEIS offices are located in three cities and TIPS offices are located in two cities. Eleven hospitals provided universal newborn hearing screening to 29% of the birth population.

Tennessee is viewed as a prime relocation site for refugees due to the very strong economy and low unemployment rate. According to the Tennessee Office of Refugee Coordination, the state's refugee growth has remained steady at approximately 1,100 per year, while the rest of the country has decreased 10-12 percent in the last two years. There is also a significant amount of in-migration from other states due to the large number of refugees already settled here and the availability of employment. Tennessee's immigrant and refugee population is concentrated in the Nashville area (50-60 percent), in Memphis (30 percent), and in the rural agricultural-based counties in the southeastern and western parts of the state. Hispanics are the largest ethnic minority in Tennessee. According to the 1994 Bureau of Census population estimates, 80,531 persons, or 1.5 percent of all Tennesseans, identified themselves as being of Hispanic origin. The Hispanic population is most likely larger than the reported number due to the growing population of migrant workers and undocumented residents across the state.

Tennessee has a wide variety of ethnic groups in addition to Hispanics. Southeast Asians are the second largest group (41,245), and the state is the fifth largest Kurdish resettlement site in the nation. Refugees and legal immigrants are now arriving from African, Baltic, Central Asian, and Southeast Asian countries.

Current ethnocultural barriers include language, educational level, health care customs and religious restriction against medical therapy. Over 30 different languages are spoken as the primary language of the home in metro Nashville. Each major medical institution in the state has a network of locally available interpreters. Education level and health care customs are sometimes barriers to health care. Most medical institutions have found that parents are not resistant to treatment and therapy when the issues are appropriately explained. Religious prohibitions are also rare, but Tennessee law is clear on the obligation of care givers to bring to the attention of the Department of Children's Services, any instances in which denied treatment would result in harm to the child. The proposed project will provide culturally sensitive, family centered care to the fullest extent possible.

Needs Assessment: There is not an integrated continuum of service delivery to document the number of infants screened and/or identified with hearing loss nor to track that audiological assessment and intervention services were initiated in a specific time frame. State funding has not been available to assist hospitals with the purchase of hearing screening equipment or supplies nor for a full time MCH staff to coordinate the program. There is a strong statewide network of intervention services with a comprehensive directory of services for each region of the state. The deaf and hard of hearing community has a comprehensive directory of services for Tennessee published annually. (see Appendix D) The Tennessee Foreign Language Institute maintains a director of translators and interpreters available to assist in the development of program materials or presentations. The number of hospital providing universal newborn hearing screening continues to increase regardless of the above limitations and the lack of mandated reimbursement for the service. Legislation for mandatory newborn hearing screening was proposed to the legislature in 1998 by did not pass. Legislation may again be submitted during the legislative period beginning January 2000. In compliance with new TennCare EPSDT guidelines issued November 15, 1999, TennCare MCOs have been directed to implement physiologic newborn hearing by the year 2003.

In 1996, hearing loss was, and continues to be, the number one diagnosis for children enrolled in the CSS program statewide and by region. Twenty percent (1,400 children) enrolled in CSS had a diagnosis of hearing loss (ICD-9 code 389) or nonsuppurartive otitis media and eustacian tube (ICD-9 code 381). About 13-15% of medical services expenditures by the CSS program are for hearing related intervention, supplies and equipment. These numbers reflect only children who qualified financially and diagnostically for the CSS medical services program. Numbers do not reflect all children with hearing loss. In an effort to better identify and determine the type of assessment and intervention children with hearing loss received and to evaluate effectiveness of program activities the CSS program used several sources of information for the needs assessment. (see Appendix D)

In 1997, the CSS program conducted a parent survey of families with children enrolled with a diagnosis of hearing loss and queried parents about how a child was identified and when and what type of services were delivered. Twenty families were selected from each of the seven CSS regions, two large metropolitan areas and three small metropolitan areas for a total of 240 surveys. Almost 150 surveys were returned, representing a 60% return rate. Survey data indicated that 25% of the children were diagnosed with a hearing loss prior to 1 year of age; 22.2% at one year; 18.8% at two years; for a total of 66% children diagnosed prior to three years of age. Of those children identified before 3 years of age, 50% of parents suspected a hearing loss by 0-12 months of age, however, only 25% were diagnosed with a hearing loss prior to 12 months old. Parents reported the amount of time from the date the parent suspected a hearing problem until the time of diagnosis as: 63% from 1-2 months; 13% 3-4 months; 3% 5-6- months; 8% 6-12 months and 13% took longer than 12 months. (see appendix D) If an accurate, accessible, easy to use method of hearing screening had been made available to the 50% of families who suspected a hearing loss prior to 12 months of age, a referral for diagnosis and intervention may have been initiated in a more timely manner.

Concurrent with the program survey, the state was participated as one of the 18 states in the MCHB technical assistance grant to University of Colorado, Marion Downs National Center, to develop a universal newborn hearing screening program. One of the required activities was to conduct a needs assessment surveys to determine the current of level hospital based newborn hearing screening; availability and type of audiologic assessment services for infants and toddlers; and the availability and type of intervention services for infants. In November 1996 and again in May 1998, the three sets of surveys were distributed. Each set of surveys requested information regarding the interest or ability to serve the infant and toddler population identified with a hearing loss, where services were delivered, and the support the person or facility was able to provide to families.

Birthing hospitals received a survey to determine whether newborn hearing screening services were provided; the type of equipment used; costs; reimbursement sources, referral rates, parental consent, personnel utilized for screening and referral mechanisms. Hospital survey results indicated the number of hospitals providing universal newborn hearing screening increased from 9 in 1996 to 28 in 1998. The percent of infants born in a hospital with access to universal hearing screening rose from 28% to 53% of the birth population over this two year period. (see Append D) Specific data was not available to determine the number of infants actually screened and referred. Because Tennessee does not have a mandate for infant hearing screening, increases in the availability were likely due to public information dissemination, including articles in national public health and medical journals, the Tennessee Medical Journal and advocacy for universal newborn hearing screening by CSS Advisory Committee and Task Force members organized for this purpose.

Licensed audiologists, licensed otolarygologists, and centers for speech and hearing evaluation received a survey to determine the population served, experience with infants and toddlers, test methods available, cost reimbursement, staffing and other services provided. Survey results of these assessment resources indicated that of the 35 respondents, 22 sites provided diagnostic services to 9,656 infants and toddlers birth to 36 months. 6,999 infants were evaluated prior to 4 months of age. Only one of the 22 sites performed the initial diagnostic evaluation at less than 3 month of age. Sixteen sites reported the confirmation of hearing loss of 84 children in the prior 12 month period. Twenty-one infants were confirmed in the period from birth to 4 months. Survey data demonstrated the types of procedures utilized in each center for fitting and amplification as well as their willingness to provide or receive additional training. Survey data did not include response from several of the states larger university based speech and hearing services, however data did support the need to increase the availability of audiologic assessment providers skilled in evaluation for infants prior to three months of age.

The third type of survey was sent to all providers and centers of early intervention services to infants and young children. These providers were queried about staffing patterns, training and experience, cost reimbursement, parent involvement and care coordination with TEIS, SSI, medical providers, and audiologic assessment providers. Twenty-three sites responded to the survey. Fifteen sites reported current services to 135 infants and toddlers birth to 4 months, 27 were less than 12 months of age. Reimbursement for services were through insurance (including TennCare), TEIS, and CSS. Only four reported self pay clients. All children enrolled in TEIS, CSS and TennCare received services at no cost to the family. Sites provide speech instruction, auditory skill development, speech reading, signed system with English word order and simultaneous speech or morphologic endings, American Sign Language and cued speech. Several sites reported the ability to provide training or an interest in receiving training to better provide services for infants and toddlers. Early intervention survey results indicated that, while there are services available in most areas of the state, there is a lack of an integrated system to assure timely follow-up. Many children are lost to follow up or intervention is delayed resulting in lost potential for language development and school learning. Not all centers referred children to Child Find. TIPS provided services through a statewide network, provided families with information on all options of intervention, documented routine involvement of parents and families, and had field staff trained in a large variety of communication methods and strategies of intervention.

In 1999, Heflinger and Saunders, affiliated with the Vanderbilt Institute for Public Policy Studies (VIPPS), provided an analysis of 1996 TennCare encounter and claims data from a sample of 6,125 TennCare enrollees under age 18. The study was based on the work done by Neff, et. al. at the University of Washington where they sought to identify those chronic conditions in CSHCN that if well managed, would reduce unnecessary hospitalizations and emergency room visits. Eight diagnoses were identified by their work and Tennessee requested that these diagnoses be used along with the diagnosis of hearing loss for the Tennessee study. Hearing impairment (ICD-9 code 389) represented 1.4% (86) of the 8.3% (506) children with one of these nine diagnoses, ranking it as the second most common condition in this sample. Asthma (ICD-9 code 493) ranked first at 5.4%. (see Appendix D)

These activities indicate the need for an integrated early identification, assessment, and treatment service system for young children with hearing loss. The state's potential number of children with hearing loss matches the national estimate of 1 to 3 percent of the population. There is growing availability of the necessary equipment in birthing hospitals but many are still using the risk factor questions to select those infants who receive screening prior to hospital discharge. Staff training and a data collection mechanism for evaluating improvements in the proposed universal screening system are not in place at this time. Assessment centers need additional information and training on identifying infants and implementing treatment intervention appropriate for this age child. The intervention system needs to be coordinated and represent a continuum of services to address the language and other developmental needs, including parent support, for families with preschool hearing impaired children. The state needs a uniform data collection and analysis system to accurately evaluate the efficiency and effectiveness of universal newborn hearing screening and treatment services in this state. Other needs identified through formal and informal evaluation of the current status include the need to establish standard procedures for reporting data from the state program to the Centers for Disease Control and Prevention (CDC) as part of the emerging Early Hearing Dectection and Intervention (EHDI) national data base. (see Appendix E)

Collaboration and Coordination: To accomplish the goals and objectives outlined in this four year project, the CSS Program will continue to serve as the lead agency for the state's universal newborn hearing screening initiative. The UNHS Task Force convened by the state for participation in the Colorado project will continue with this proposed project. (see Appendix A) In addition to guiding the full implementation of the project, the Task Force will design and implement the data collection system, advocate public awareness of the need for the service, develop protocols for services to be provided, assure parent participation, and assist in meeting project goals and objectives.

The NSP program will collaborate with the CSS hearing screening efforts by including information about the provision of hearing screening prior to hospital discharge on the data collection form already used by the program. (see Appendix E) Birthing hospitals will provide the parent and pediatrician with information regarding the outcome of the screening. The NSP will generate special letters for this project to be sent to the pediatrician/PCP and the parent about resources available in their area for further assessment and the project staff to initiate follow up through the network established between CSS and TIPS. Project staff will receive summary reports on the number of infants screened, type of test, number referred, and referral rates.

The NSP received an MCHB-CISS grant award in 1999 to develop an integrated method for referral to CSS Care Coordination for infants identified with genetic or metabolic disorders. In addition, the NSP system would provide a method to track client outcomes. The goals of universal newborn hearing screening in regard to measuring outcomes and assuring follow-up are identical to the Genetics program goals. Hearing screening data to be collected and reported from the NSP system include: number of live births; number screened prior to discharge; number screened before one month of age; number referred; number referred by right and/or left ear; type of physiologic test used (ABR/OAE) and referral rate per hospital. The number diagnosed with hearing loss and other specific information regarding evaluation of the assessment and intervention components will be designed and implemented with assistance from the Task Force and from the CDC Early Hearing Detection and Intervention recommendations.

The CSS regional program directors and the TEIS/TIPS regional service coordinators will receive referral letters by NSP for infants needing further assessment so that these programs can provide the necessary follow-up and support to assist the family to obtain assessment and diagnosis. TIPS and TEIS are administered through the Department of Education, Division of Special Education Early Childhood programs for IDEA Part C. (see appendix B) TIPS is one of the statewide providers for TEIS. TEIS offices are located in the nine education districts across the state and interact directly with TIPS to coordinate Child Find and enrollment in TEIS. TIPS has a statewide network of home-based, educational services for children from birth to five years of age with hearing loss, vision loss and/or multiple challenges. There are seven area offices across the state. TIPS Parent Advisors have a background in one or more of these areas: audiology, counseling, deaf education, speech pathology, child development, special education, or vision. In addition, Parent Advisors must successfully complete a home training program before they are assigned a family. TIPS provides families with counseling, training in the use of hearing aids, communication methods, skill development in auditory and language activities, and parent-group meetings for peer support.

The CSS Program provides reimbursement for equipment, supplies and treatment for those children financially eligible for medical services. CSS and/or TIPS care coordination is provided for any child identified with a hearing loss regardless of income level. Enrollment in TEIS and TIPS will assure reporting to Child Find.

During Years 1 and 2 of this proposed project, the birthing units at Memphis Methodist Hospital (four locations serving 10.86% of the TN birth population) will serve as the pilot site for the data collection and referral system. This hospital system has had an established universal newborn hearing screening component for all babies born in their facilities for 10 years. This program has developed a good system for tracking and follow-up of infants for rescreening and assessment. They do not however, have the capacity to report screening information to a central statewide data base and have not developed a data collection system to track entry into care or early intervention. By voluntarily serving as the pilot site, they will assist the project in developing the necessary links between the collaborators to provide an integrated, sustainable system of identification, assessment and intervention. They will also provide the basis for the data collection system that allows us to document outcome of the universal screening effort.

The project will establish a contract and/or Memorandum of Agreement in cooperation with TEIS and East Tennessee State University (ETSU) to refine the current data collection system utilized for the state's Part C TEIS quantitative data collection and analysis of TEIS services and Child Count. This system collects data on children birth to age three years, who meet the State of Tennessee definition of developmental delay under IDEA. Data is collected from many different sources that provide services to this population. Qualitative data includes demographic data, services a child received, services a child needed but did not receive, the setting in which the service was provided and if the child received early intervention services in accordance with the individualized family services plan (IFSP) as required by Part C. Services documented include audiology, assistive technology, speech/language, and family training/counseling. (See Attachment E) The system is capable of collecting additional data related to newborn hearing screening. This data will include the number referred for diagnostic audiologic evaluation; number with audiologic evaluation by three months of age; number with permanent congenital hearing loss age birth to three years; number with permanent congenital hearing loss by classification; and the number receiving intervention services by six months of age. Data collected will reflect the recommendations by CDC for infant hearing screening data collection. In addition, the TEIS program also has plans to incorporate information for long term follow-up to determine outcomes on children after the age of three years.

Finally, the state's EAR Foundation, a special non-profit organization of the Ear, Nose and Throat subspecialties, has expressed interest in providing financial support to assist with a public information campaign and in-service training of various professional groups. A pamphlet with basic information about the importance of newborn hearing screening will be developed and distributed to all new parents. A distance learning videoconference program will be developed to educate professionals about the system and the technology and protocols for hospital screening, audiological assessment and treatment modalities. Recommended intervention services including protocols for management of infants with hearing loss will also be presented. Training will be offered during year 1 and 2 of the project and videotape copies will be produced and offered to interested parties.

Collaborators have representatives who serve on the Task Force established for universal newborn hearing screening. Letters of support from all these collaborators are contained in (see Appendix F)

The CSS Program Director served as a special consultant for hearing screening on a the TennCare committee of medical professionals convened by a consent decree that was charged with reviewing the EPSDT (Medicaid) periodicity schedule and screening tools used for vision screening, hearing screening and developmental/behavioral screening. The committee strongly recommend newborn physiologic hearing screening prior hospital to as part of the EPSDT services. As reported early in this document the recommendations were adopted by the TennCare Bureau.

Goals and Objectives: The goal of the Universal Newborn Screening Initiative is to establish and implement a sustainable, integrated hearing screening service for all babies born in Tennessee prior to hospital discharge. The objectives to accomplish this goal are as follows:

• By October 1, 2000, the Genetic NSP data collection system will be modified to provide basic hearing screening information on infants receiving hearing screening in the hospital setting.
• By April 2001, the Genetic NSP data collection component will be implemented at the demonstration birthing hospital site.
• Develop protocols for screening, audiologic assessment and intervention services by July 1, 2001.
• By July 1, 2001, implement the public awareness plan for professionals and the general public about universal newborn hearing screening.
• By July 1, 2001, develop a training plan for professionals in the three areas of audiologic assessment/fitting of hearing aids in infants and toddlers, early intervention services/communication options and quality hospital newborn hearing screening procedures.
• By December 1, 2001 have the ETSU TEIS qualitative data system modified to collect follow-up, assessment and intervention information.
• By January 31, 2002, expand the hospital reporting system, refined by the demonstration site, to at least one other birthing hospital in each of the three grand regions of the state.
• By April 30, 2003, expand hospital reporting statewide, targeting all birthing hospitals with 200 or more births a year.
• 85% of infants identified with a suspected hearing loss will receive an audiological/diagnostic assessment within three months of initial screening by July 2003.
• 85% of all infants born in Tennessee will receive a hearing screening prior to hospital discharge, or prior to 3 months of age, by July 2003.
• 90% of infants diagnosed with a hearing loss will receive early intervention services prior to six months of age by July 2003.

Required Resources: The financial resources required, in addition to those existing, to accomplish the stated goal and objectives are described in the Budget Justification. An audiologic consultant will work 50% time (0.5 FTE) with this project to lead in the development and implementation of protocols for screening, audiologic assessment, and data collection. The consultant will provide technical assistance to individual hospitals on screening technology, referrals, reporting, and follow-up. The consultant will assist in the identification and development of an audiologic assessment network. The audiologic consultant will coordinate training opportunities for audiologic assessment providers to assure a standard of care in working with infants and toddlers. The person who is considered for this position must be licensed and certified as an audiologist in the state of Tennessee and have significant experience with infant hearing screening in a hospital setting, knowledge of audiologic assessment, diagnostic techniques and quality management.

A Child and Family Consultant will work 30% time (0.3 FTE) with the various committees and program staff to assure that parent and child service delivery issues, cultural sensitivity, confidentiality, informed consent, family bonding and family respect are addressed in each area of project design. The person in this role will be the parent of a hearing impaired child with skills that enable them to communicate with professional, peers and the public. The Child and Family Consultant will assist in the development of media and educational material. The consultant will provide consultation and support to families. The consultant will participate in training families, professionals, CSS and PEP staff in family support and community resources.

MCH/CSS will contract with East Tennessee State University in cooperation with the Department of Education, TEIS program for data reporting and compilation of assessment, intervention and outcome information specific to infants and children identified through the newborn hearing screening program. This data system will allow the state to monitor progress toward the stated goal and will provide feedback to all collaborators regarding the success of identifying and entering infants and children with hearing loss into an appropriate level of care. Other funds will be used to assist with the modification of the MCH Genetic NSP data system so that accurate screening and demographic information can be collected in a timely and accurate manner.

Other resources from the grant will be used to develop the public information materials, parent and professional materials and public service announcements in English and Spanish, training programs and to conduct a videoconference for medical and allied health professionals to be broadcast at several sites across the state. Existing training and information videos will be utilized. The videoconference will provide basic information about infant hearing screening and educate the community about the state's role in facilitating the development of a universal system through the collaboration of the partners identified.

The project has been designed so that the universal newborn hearing screening network for reporting and referral will be sustainable at the end of the grant period, even if no other state funds are available. Expenses for support activities, such as data collection and necessary travel will be provided through regular CSS and MCH services and block grant funds.

The grant funds will be used to accomplish the stated goal and objectives and for no other purpose than those specified in this application. Furthermore, the necessary fiscal control and accounting procedures are already established for the administration of federal grants such as this one. Those same controls and procedures will be used to administer this grant.

Project Methodology: The project will utilize the expertise of the established CSS Advisory Committee, UNHS Task Force, subcommittees and community participants to guide the development and implementation of this project though meetings and/or conference calls on a quarterly schedule. Subcommittees for screening, audiologic assessment, equipment, early intervention, legislation, reimbursement, family participation, data collection, public and professional awareness and training will continue. The status of objectives will be reviewed semi-annually to assure compliance by the end of the grant period. Meetings of collaborators will be scheduled as needed for implementation of the project at the pilot site and for the expansion to other identified sites. The objective of such meetings will be to address problems and processes so that a sustainable, integrated system is the result of our efforts.

Formal letters or memorandums of agreement will be developed by September 2000 with each department or agency participating in data collection. Collaborators include but are not limited to the EAR Foundation, Department of Education (for TEIS and TIPS), TREDS (the Tennessee Deafblind Project), Memphis Methodist Hospitals, Family Voices, Tennessee Perinatal Association, Brentwood Hearing and Hearing Aid Center, League for the Hearing Impaired, A.G. Bell of Tennessee, and East Tennessee State University. Other health and education system resources will be incorporated as collaborators, when indicated, to improve and integrate a statewide system that maximizes the number of infants identified and enrolled in intervention prior to school entry.

The MCH director will provide guidance to assure departmental compliance. The CSS program director will coordinate activities provided by departments, programs, agencies, hospital, Advisory Committee, Task Force, professional and consumer organizations to expedite systems building activities. She will be responsible for program monitoring and evaluation. The CSS nurse consultant for newborn hearing screening will be responsible for program coordination and technical assistance to field staff and agencies to promote program compliance, coordinate training opportunities for hospitals, agencies, professionals and the general public. The CSS program will develop a network of audidologic providers in the same manner as the CSS medical provide network. Providers will be placed on the data base for a two-year renewal cycle. The position will be responsible for all data collection activities and training necessary to implement the system. The Audiology Consultant will be responsible for the development of protocols; compliance with professional standards and recommendations regarding screening referral rates, reliability of screening equipment; and building the network audiologic assessment providers available for this population. The consultant will provide technical assistance to field staff, professional organizations and consumers. The TEIS program will be responsible for monitoring early intervention services through the current provider monitoring system.

The Genetic NSP will be responsible for data collection on every infant born in the state receiving newborn screening. This information will provide baseline data on the number of infants screened and referred in a uniform, timely and accessible reporting system. The NSP system will be responsible for notification of PCP, families, teritiary centers, TEIS/TIPS and CSS of the follow up when an infant needs re-screening or further testing. TEIS/TIPS and/or CSS field staff will be responsible for assisting families to utilize the PCP/medical home to obtain necessary re-screening or audiologic assessment. TEIS/TIPS will enroll children confirmed with a hearing loss into TEIS and provide or coordinate early intervention services with a variety of providers as determined by the IFSP. CSS will enroll infants for medical services and care coordination in a manner not to duplicate services or coordination activities.

The MCH Health Planner, a full time position with the MCH section, will assist in the analysis of data to assure the project is meeting targets. This Health Planner will be responsible for coordinating data questions and analysis with staff who are resources from the health statistics section of the Department, NSP and ETSU data system. This person will also write annual summary reports regarding the status of program implementation. If the state is successful in its application to the CDC for a portion of the Universal Newborn Hearing Screening Surveillance System, the Health Planner and the Program Director will actively participate in the surveillance system design and implementation, building on the work of this grant.

The state is piloting a comprehensive data network of children with special needs that are enrolled in state programs. The Children's Information - Tennessee (CIT) system will enable state agency programs to track services provided to an individual by other state agencies. The system will allow communication between agencies and program care coordination staff to promote the coordination of care and services to the child and family. The TEIS and CSS staff have worked closely in the development of this project and believe it will benefit the target population identified in newborn hearing screening. The CSS program is also considering applying for the hearing screening surveillance system funds to be released by CDC to develop a sophisticated hearing screening surveillance system.

The CSS program anticipates the continue support and access to the excellent technical assistance provided by the Colorado Marion Downs Center.

4.2.11 Plan for Evaluation: Evaluation of the project will include formal review of the process and outcome measures. Project activity willemphsize accomplishing the goal to establish a sustainable UNHS system for all infants born and to meet the target of full audiologic assessments by 3 months and enrollment in intervention servuces by 6 moths of age for those identifies with hearing loss. Questions that will be answered, in addition to the objectives listed, as the project's process indicators are: 1) Has a formal linkage been established between the hospital, PCP/medical home, audiological assessment provider, TEIS/TIPS early intervention service provider, and CSS medical or care coordination? 2) Has the ISFP been initiated and are those working with the child accomplishing the case specific objectives? 3) Have ethnocultural and family satisfaction needs been recognized, documented and addressed by providers in regard to accessibility and cost? 4) Has the child developed skills that more closely fall within the limits of a normally hearing child?

The following data elements and information compiled will be used to evaluate the accomplishment of performance measures and the outcome or results of the project overall. 1) Time in days from the initial hearing screen to date of referral to PCP/Medical Home. 2) Time in days from the date of referral to PCP/Medical Home to audiological assessment. 3) Time in days from the date of audiological assessment to referral to intervention services. 4) Time in days from the date of referral to intervention services to date services implemented. 5) The number of infants referred but never confirmed or confirmed but lost to follow-up. 6) Family satisfaction surveys through existing program methods and addition surveys developed by the program. 7) Document test scores/outcomes related to language and cognitive development and educational requirements. 8) Evaluation of hospital screening rates.

The program will evaluate the status of the system and identify components that require modification by the beginning of Year 3 (March 2002). The mid-point evaluation will document project impact and accomplishment of objectives to date. Final evaluation and status report of the project is to be completed by June 2004, following the end of the four- year grant period.