|
|
||
|
|
|
|
| www.infanthearing.org | |
||
|
|||
|
State Grants > CDC 2001 > Tennessee |
|
|
|
Centers for Disease Control and Prevention EHDI GRANT (2001): GRANT ABSTRACT Centers for Disease Control and Prevention Proposed Activities under EHDI project: This project will establish a new database of information by integrating the NHS program with other data systems in the state. This includes the current East Tennessee State University (ETSU) Center of Excellence in Early Childhood Learning and Development program and the contractually developed system. This will be integrated with the data from Children's Information Tennessee (CIT) data system and the Data Utilization and Enhancement (DUE) project. The program will collect: the number of infants referred for diagnostic evaluation, the percentage of infants that return for follow-up and/or diagnostic services, the average age which infants receive diagnostic services, the number of infants diagnosed with congenital hearing loss, and the average age of diagnosis, the type of hearing loss, the average age when beginning early intervention services, and language scores at time of transition into school system (age 3). This system will track service provision, assess service needs, coordinate services, manage the services more effectively and efficiently, analyze epidemiological information and trends, and plan for future needs and policies regarding children's health care. The EHDI project will establish a sustainable, centralized tracking and surveillance system; integrate the EHDI with the newborn screening programs; and conduct applied research using the information collected during the project.Organizational Structure: The Tennessee Department of Health (TDOH) is the primary unit of organization. Maternal and Child Health (MCH) resides within TDOH and Children Special Services (CSS) is within MCH. The EHDI portion of the Newborn Hearing Screening Program will operate under the auspices of CSS. Part of the TDOH framework is Policy Planning and Assessment (PPA). CIT, DUE, and Research operate within PPA.PROJECT NARRATIVE A. Understanding the ProblemThe importance of screening newborns for hearing loss before hospital discharge through the implementation of statewide programs has gained a lot of momentum in the past several years. This is evidenced by the fact that 32 states have passed legislation to mandate newborn hearing screening programs (National Symposium on Infant Hearing, July 2000). One important factor in this wave of growth has been the support of national organizations that have embraced this cause. Position statements such as the American Academy of Pediatrics Task Force on Infant Hearing Position Statement (1999), the Joint Committee on Infant Hearing (JCIH)(1994) and the Healthy People 2000 (1990) along with current research findings have proven that universal newborn hearing screening is a feasible, beneficial, and justifiable service.With the surge of hospital based universal newborn hearing screening programs across the country, states are beginning to feel the awesome responsibility of providing the appropriate resources, in a timely manner, to hard of hearing newborns, toddlers and their families. As the number of newborns identified with hearing loss increases, the need arises for state programs to refine their existing follow-up and intervention programs so that they are better equipped to meet the many and diverse needs of this population. It is through the integration and cooperation of agencies that serve these children that states will be able to provide needed services in a timely manner.Current Tennessee ProgramJacque Cundall, the Children's Special Services (CSS) Director, along with a Task Force of various professionals, parents, and other advocates, initiated Tennessee's Newborn Hearing Screening (NHS) program in 1996. In 1997, Tennessee was one of the states chosen to receive technical assistance through Colorado's grant. Survey's conducted through the grant revealed that in 1998, 23 hospitals in TN had a universal newborn hearing screening (UNHS) program in place, and 11 hospitals were testing high-risk newborns. In June 2000, a full time UNHS program coordinator was approved to implement a statewide system of screening, assessment, and intervention. In August 2000, data collected from hospital surveys revealed that almost half (42 of 93) of the hospitals in Tennessee had voluntarily initiated a UNHS program. Seven additional hospitals were testing high-risk newborns. This accounts for 68% of Tennessee's newborn population. At this time in Tennessee, there is no law requiring hospitals to perform newborn hearing screening. There has been widespread statewide support for universal newborn hearing screening (UNHS) this legislative session, as evidenced by seven separate bills being introduced into the 2001 legislative session to make it mandatory for all hospitals with greater than 75 births per year to implement a program. Because there is not currently a legislative mandate, the NHS program has not been able to implement the systematic and integrated follow-up plan that was developed in conjunction with several other state and private agencies. If proposed legislation is not passed, the NHS program will amend the metabolic newborn screening rules to allow for release of information between the Department of Health and the Department of Education's Individuals with Disabilities in Education (IDEA), Part C program - Tennessee Early Intervention System (TEIS). At this time, for hospitals that are participating in the program, the hearing screen results are recorded on the metabolic lab slips by hospital personnel and sent to the state laboratory for data collection. Because the hearing screen results are recorded on the metabolic lab slips, most hospitals are allowing informed consent for hearing screening to be part of the initial consent given by guardians for "all" newborn testing. Once the results are submitted at the state laboratory they are added to printouts termed "mailers" which also include the metabolic test results. These results are automatically sent to infant's primary care physician. Adding the results to the mailers aids the referral process currently utilized by primary care physicians until TEIS can further assist physicians with follow-up. The decision to merge the newborn hearing and metabolic screening programs together was made because of the ease for hospital personnel, cost savings, and the combined use of program personnel. In combining with the metabolic program, the NHS program has been able to utilize the data management company, Neometrics, which set up the existing system at the state laboratory for the metabolic program. Working closely with Neometrics, the NHS program developed a system that has the capability to generate letters at the state laboratory for those newborns who do not pass their hospital hearing screen. The letters that are generated will be sent to the infant's primary care provider, guardian, and to the regional TEIS coordinator. These letters report that the infant has not passed the hearing screen, and must return to his/her primary care provider for coordination of follow-up services. TEIS's role willisto assist families identify and obtain further audiological follow-up. The NHS program has just completed compiling data from a statewide survey of audiologists and audiological facilities to identify providers of newborn and infant audiological assessment to be used by TEIS, primary care providers and other referral sources. From this survey, in combination with the protocol for infant audiological assessment set forth by the program, a database has been established that contains these five sets of information:
These agencies are listed by location to identify any "pockets in the state" that lack any of the above mentioned resources. The program will monitor these areas and target them for special training events and programs. The overall success of any NHS program depends largely on the cooperation of the state Early Intervention (EI) system. In Tennessee, a strong relationship with the states EI system exists. The leaders have always been strong advocates of universal newborn hearing screening. Funding for this project will be used to integrate the two programs. Linking with East Tennessee State University's (ETSU) data system (which is contracted with the EI system to collect numerical data on all children that enter the system) the NHS program will be able to track hard of hearing infants and toddlers. Plans are to update the current system's capabilities to include demographic data as well as numerical data. This would enable the NHS program to track the number of newborns receiving diagnostic services before 3 months of age, and early intervention by 6 months.Currently, due to limited resources, the only type of tracking capabilities that exist in the NHS program are reports developed by Neometrics focused on screening only. The type of information collected is listed below:
The project will link the NHS program with the Children's Information of Tennessee System (CIT) and Data Utilization and Enhancement Project (DUE). This will provide the program with case management capabilities to ensure that hard of hearing infants and toddlers have their all of their health needs coordinated, not just those related to hearing loss. |
|
| National Center for Hearing Assessment & Management (NCHAM) Utah State University - 2615 Old Main Hill - Logan, Utah 84322 Tel: 435.797.3584 Questions & Comments |