Project Title: Louisiana's Sound Start Program
Project Number: CDFA 93. 110-ZZ. Universal Newbom Hearing Screening
Project Director: Linda B. Rose Phone: (504) 568-5055
Organization Name: Office of Public Health. Children's Special Health Services
Address: 325 Loyola Avenue. Room 607
New Orleans. LA 70112
Contact Person: Linda B. Rose Phone: (504) 568-5055
Fax: (504) 568-7529
E-mail/World Wide Web Address: lrose@dhh.state.la.us
Project Period: Years 4 From: 4-1-00 To: 3-31-04
Current Budget Period: From: 4.1-00 To: 3-31-01
The project is a proposal to refine and improve Louisiana's universal newborn hearing screening (UNHS) program entitled, "Sound Start", The Sound Start program has been in existence since 1994 when all birthing hospitals in Louisiana were required by law to begin hearing screening before discharge on all infants at risk for hearing loss. Before 1993, there were no hospitals in the state performing universal screening. At the present time, over 40% of the hospitals voluntarily perform universal screening. The progress toward the goal of UNHS statewide has been dramatic and unique. It has been the result of efforts of the many dedicated parents and professionals throughout the state, who in many cases, volunteered their time and resources to this program. It has culminated in the year 2000 with a state mandate for UNHS set to begin in January, 2001.
The goal of this project is to develop a sustain able statewide system for infants and children who are deaf or hard of hearing and their families and to refine aspects of the system already developed.
The project director will be Linda Rose, currently the administrator for Children's Special Health Services and formerly the director of the Hearing, Speech and Vision Program in the Office o f Public Health, Louisiana Department of Health and Hospitals. She has 23 years of experience in public health as a screening technician, clinical audiologist, audiologist supervisor, and program director. Her activities in state and national speech and hearing organizations are detailed in her biographical sketch. She was involved from the beginning in the initiation and development of the Sound Start Program in Louisiana and has taken a leadership role on the national level in the area of UNHS.
Louisiana is particularly in need of assistance with the Sound Start Program. The program was mandated without additional funding for the Office of Public Health to implement it. An extraordinary volunteer effort has made the progress to date possible. The funds available through this project will make possible the refinement of a basic system already in place. Louisiana is a poor state with a higher than average prevalence of disabilities, a large high risk, minority and underserved population, and an increased incidence of heredity hearing loss. The project funds will serve to markedly improve the transitions between the different stages of UNHS, screening, diagnosis, habilitation and intervention and provide a seamless system of services for families.
Currently 32 of the 73 birthing hospitals in Louisiana perform UNHS. It is expected that with the adoption of rules and regulations in response to she new legislation mandating UNHS, all birthing hospitals will begin universal screening by January 2001. Even though hospitals perform the screening and this goal of 100% implementation is expected by January, 2001; there are many aspects of the system that need improvement and refinement, including:
1. The referral rates from initial screening are high (from 10 to 12% statewide) and technical assistance to hospitals and standard setting needs to be done to improve test methods and reduce referrals.
2. Voluntary reporting indicates that less than 50% of families follow-up on screening recommendations. The current tracking system has many problems and needs improvement. Barriers to care for families need to be identified and solutions found.
3. Referrals to early intervention services are sometimes haphazard and more information needs to be available to parents and professionals so that a seamless system is in place.
4. Data collections methods currently result in approximately 30% of records being incomplete. Training, technical assistance and monitoring is needed for hospitals. Education and awareness of voluntary reporting would assist in improving tracking.
The goal and objectives of the project are to assure a sustainable, a statewide, comprehensive, family - centered, culturally competent, seamless, community-based, system of services for early identification and habilitation of deaf and hard of hearing children and their families in Louisiana.
1. Establish and implement mechanisms for coordinating screening with diagnostic services, family support, medical home, early intervention programs and financial reimbursement opportunities.
2. Identify barriers and unmet needs and develop resources and solutions for an effective system of services.
3. Strengthen communication and education with all stakeholders in the Sound Start Program.
4. Improve data collection, accuracy, analysis and distribution among all parts of the system including screening (hospitals), diagnostic services (audiologists and physicians) and early intervention services.
The methodology that will be used to address these objectives is to contract for the services of a program coordinator and a systems development coordinator. The program coordinator will have the responsibility to coordinate a statewide system of care; facilitate State Advisory Council and other meetings to promote collaboration; facilitate the development of guidelines and standards; plan public and professional education activities; investigate sources of funding; provide technical assistance to hospitals; evaluate and improve data collection, analysis, and reporting; and work with the Medical Home Project of the Louisiana chapter of the American Academy of Pediatrics. The systems development coordinator will conduct a needs assessment in two regions of the state regarding barriers to care and unmet needs for families of children who are deaf or hard of hearing; develop a model system; develop a regional directory of services; identify underserved populations and recommend effective outreach activities; and increase and foster parental and consumer input into the system.
The evaluation of the program will be through outcome data based on the Maternal and Child Health (MCH) Block Grant National Performance Measure and the 7 items in the National Data Base for Newborn Hearing Screening. (Appendix) When the system is improved and the barriers are identified and overcome, statistics indicating the age of identification, the age of amplification and the age of enrollment in early intervention will improve. These outcomes will be the evidence of a seamless, culturally competent, family-centered, community based, system of services. The Hearing, Speech, and Vision Program already collects data on these indicators and part of the project will be the improvement of data collection and tracking methods.
PROJECT NARRATIVE
4.2. Louisiana's Sound Start Program
4.2.1 Purpose of the Project
In 1993 Louisiana did not have any hospitals performing universal newborn hearing screening (UNHS). In the year 2000, over 40% of the hospitals provide hearing screening to all babies born at their facilities. Although Louisiana enacted a law in 1993 requiring hospitals to perform hearing screening on high risk infants, many hospitals voluntarily decided to provide this vital service to all births. This tremendous effort has been accomplished without specifically allocated state or federal funding, but using existing resources and voluntary efforts of major stakeholders throughout the state. Even with the extraordinary progress to date, the system currently in place suffers from a lack of coordinated and sustained effort to bring all collaborators together to build a successful system of services for deaf and hard of hearing children and their families. In addition, the most critical part of the system, access to and education about follow-up services (including audiological rescreening and diagnostic evaluations) hearing aid fittings and early intervention services) is lacking successful outcomes and requires investigation. Current follow-up rates at some hospitals in the state, especially in the urban area of New Orleans are as low as 40 to 50°/o. Other hospitals have as much as 90 to almost 100% of their patients return for testing and additional services. There have been many theories as to the reasons for these vast differences, including family socioeconomic levels, lack of transportation, parental lack of understanding of the testing, lack of communication to the child's medical home, and families with other more important needs.
This project proposes to refine and improve Louisiana's Sound Start Program that has been in effect for 7 years. The goal is to assure a sustainable, statewide, comprehensive, family-centered, culturally competent, community-based, seamless system of services for early identification and habilitation of deaf and hard of hearing children and their families. The project proposes to accomplish this goal by retaining contractual services of two persons designed to coordinate and further refine the system already in place and to perform a needs assessment of families of children in need of follow-up services. The job duties are detailed in Appendix 1&2 and describe the activities of each position. In summary, these activities will serve to develop mechanisms for coordinating all aspects of the system of services; identify barriers; strengthen communication and collaboration among stakeholders; and improve the data collection system and provide for analysis and distribution of results.
The current support for the Sound Start Program are a Program Director, Audiologist Manager, Statewide Parent Coordinator, Clerical Staff and Regional Audiology Staff. In 1993, the Communicative Disorders Program Director was responsible for speech and hearing services to children from birth to age 21. This includes identification, assessment, diagnosis and treatment; setting standards for the services; collaboration with other agencies and the private sector; budgetary responsibilities and professional supervision of 10 audiologists. The Sound Start program was added to these job responsibilities. In 1997 the Vision Program was incorporated into the Communicative Disorders Program and the program was renamed the Hearing, Speech and Vision Program with the similar additional responsibilities for vision testing and professional supervision of 7 additional staff. With the continual additions of major responsibilities to this position, not enough time has been devoted to the complex systems development for the Sound Start Program. A position dedicated to the development and establishment of universal newborn hearing screening in Louisiana will be able to immediately refine and put into place a system that can then be overseen by the Hearing, Speech and Vision Program Director at the end of the grant period.
The Audiologist Manager, Melinda Peat spends approximately 20 % of her time in coordinating Sound Start activities, including reporting to The Marion Downs National Center as part of their MCH grant, communicating among regional audiologists, the State Advisory Council and hospitals. These activities are in addition to clinical services to a region of the state, including organizing a Sound Start Regional Task Force for the region she provides services to and professional supervision of the 9 regional audiology positions.
The Statewide Parent Coordinator, Mary Ann Veade holds a part time position and spends approximately 15 % of a full time equivalent in Sound Start related activities. Some of her job duties include: attending State Advisory Council meetings, advocating for families in policy decisions, identifying and communicating parent's issues and needs to program administration and connecting individual families to community resources.
The clerical and regional audiology staff also share responsibilities for hearing and speech and language activities in the general Maternal and Child Health and Children with Special Health Care Needs program and the Sound Start Program. Many of the regional audiologists now perform supervision of the vision staff in addition to their previous duties. The percentage of time for Sound Start activities in their regional area is approximately 10 %. They must incorporate Regional Task Force meetings, providing technical assistance to local hospitals, coordinating follow-up services, contacting individual families to determine reasons for not following through, distributing information to hospitals, physicians, audiologists and early intervention providers in their area and attempting to improve data collection at the local level. Again, these duties were assumed without any reduction in current responsibilities or increases in staff.
The benefits of this project will be to provide a infrastructure through contracted services to refine and set in place a sustainable system of services that are needed for children identified with hearing loss in Louisiana. The project will most benefit families to enable them to have easy, family-centered, culturally competent access to an array of services to allow their children to develop and grow as normally as possible and enjoy a productive and healthy life in the future. The project will also benefit the state in numerous ways; by eliminating duplication and streamlining services; by preventing problems from becoming more severe with early identification, therefore saving the state funds in rehabilitation and education services; and by helping to provide productive citizens who will contribute to their communities.
4.2.2 Organizational Experience and Capacity
Evidence of organizational experience is best described in the history of the state-mandated newborn hearing screening program in Louisiana, entitled the "Sound Start Program".
A need for the early identification of hearing loss was apparent in Louisiana, and in 1991 a unique approach to the early identification of hearing loss was initiated. An informal survey of the average age of identification of children enrolled in treatment and early intervention programs revealed an unacceptable 2 1/2 to 3 years of age. Several professionals and parents decided to attempt to start a systemized state-wide program, and proposed legislation to mandate identification and screening of infants at risk for hearing loss.
Garnering unprecedented support in the medical, speech and hearing, and Deaf communities, Act 417, The Identification of Hearing Impairment in Infants Law, was passed unanimously by the Louisiana Legislature and signed into law by Governor Edwin Edwards in 1992. (Appendix 3) The legislation was based on the Alexander Graham Bell Association and the American Academy of Otolaryngology-Head and Neck Surgery model bill for early identification of hearing loss with one notable exception, Act 417 was passed without specifically allocating funding either for the administration of the program or for the screening tests. The Office o f Pub lie Health (OPH) under the Louisiana Department of Health and Hospitals was the agency designated to administer the program, and agreed to do so using existing resources and community support. Many thought that this fact alone doomed the program to failure, however the determination, hard work, and support of a large number of individuals throughout the state had been largely underestimated.
Louisiana was the 16th state to enact legislation in 1992, and joined another 6 states with state-wide infant hearing screening programs operating with no mandate (American Speech-Language-Hearing Association [ASHA] Survey). Act 417 requires that all infants at high risk for hearing impairment receive a hearing screening test before hospital discharge. It was difficult to compare Louisiana's legislation with other state-wide infant hearing screening programs at that time either with or without mandates, because most of the programs include only a high risk register with no requirement to perform testing in the hospital. According to the ASHA Survey of Infant Hearing Impairment Identification Programs, the majority of states with legislative mandates in 1992 had a relatively low percentage of birthing sites actually screening hearing. Only a handful of states, such as Colorado, Rhode Island, and Hawaii were either mandating or voluntarily requesting state-wide universal hearing screening before hospital discharge. Only one state with a legislative mandate (Rhode Island) reported 50% or more of its birthing sites screening hearing (ASHA Survey). Louisiana's requirement that hearing screening, even if only of those infants at risk, be performed before hospital discharge was relatively new and unique on a state-wide basis in 1992.
Prior to Act 417 only a handful of hospitals in the state were performing any type of hearing screening on site. Of the approximately 11 hospitals performing screening, none were using all of the high risk factors of the Joint Committee on infant Hearing 1990 Position Statement (none had included family history, for example) and most were either testing NICU babies or testing upon doctor's orders. No hospitals were performing universal newborn hearing screening (UNHS) at that time. The requirements and subsequent implementation of Act 417 were to radically change the status of infant hearing testing in hospitals throughout Louisiana.
Regrettably, statistics show Louisiana to be a state with many health risks for its citizens and it is frequently at the top of lists of indicators for poor health and environmental conditions. In addition, with 1/3 of the state's children living in poverty, clearly much of the young population can be considered to be at risk for a number of reasons. Due to the numerous other health problems affecting Louisiana's children, which in many instances, are perceived to be more important than identification of hearing loss, and a serious fiscal crisis facing the state in 1992, this program was undertaken without a request for funding. The Office of Public Health agreed to try to unite with community resources in support of the early identification of hearing impairment.
4.2.2.1 Regional Task Forces
Outstanding community leaders in all of the 8 state planning districts were contacted for their help and leadership. Eight Regional Task Forces were formed with these leaders at the helm and OPH staff audiologists at their side. Their task was to assist in the development of the state-wide program by enlisting the participation of local physicians, audiologists, hospital administrators, nurses, speech-language pathologists, educators of the deaf, early interventionists, parents, and the Deaf community. The Task Forces were and continue to be instrumental in the development of all aspects of the program, including: the forms in use, the rules and regulations adopted, and the follow-up system tailored to each unique region in the state. Their participation is the critical factor in assuring that services are community-based, that is, that the needed services to children and their families are provided in or near their home communities to facilitate the ability of families to care for their children and promote normal patterns of living.
The Regional Task Forces held meetings for all the participants in the area, gathering input on all aspects of the program. They acted as technical support to hospitals facing decisions about the best way to implement testing in their facility. Through their work, needs of the hospitals and communities, as well as barriers to service delivery were identified. Locally, they also assisted with education of the public and professionals.
4.2.2.2 State Advisory Council
The legislation also created a State Advisory Council comprised of the different disciplines, parents, and consumers listed below:
1. An otolaryngologist or otologist
2. An audiologist with extensive experience in evaluating infants
3. A neonatologist
4. A pediatrician
5. A deaf person
6. A hospital administrator
7. A speech and language pathologist
8. A school teacher or administrator certified in education of the deaf
9. A parent of an oral hearing impaired child
10. A parent of a hearing impaired child utilizing total communication
11. A representative of the state Department of Education designated by the superintendent of education
12. A representative of the Office of Public Health designated by the assistant secretary of the office
13. A representative from the Louisiana Commission for the Deaf
14. A representative from the Louisiana Association of the Deaf
The current State Advisory Council members are listed in Appendix 4. The State Advisory Council receives input from all areas of the state and from individuals, parents and families, community leaders and OPH regional audiologists through the Regional Task Forces in each of the 9 state planning districts. This cross section of participation by different groups and disciplines has been another asset to the development of this system. The State Advisory Council assisted in the design of the program and developed the guidelines using the information submitted from the regional task forces as a gauge of local needs.
4.2.2.3 Requirements Of The Law
The basic requirements for the hearing screening program were incorporated into the law. Act 417 includes provisions for the following:
1. A list of risk factors that identify an infant at risk for hearing impairment based on the Joint Committee on Infant Hearing 1990 Position Statement with an open-ended opportunity for other risk factors "added by the Office of Public Health upon recommendation of the advisory council".
2. A definition for screening citing auditory brainstem response (ABR) screening specifically, but also allowing "other devices approved by the office upon recommendation of the advisory council".
3. Development of an at risk questionnaire for infants at risk, and for infants at risk for progressive hearing loss.
4. Requirements that the at risk questionnaire be completed for any newborn prior to discharge from the hospital or other birthing site.
5. Requirement that the hospital or other birthing site provides screening for hearing impairment for infants at risk by ABR or other screening device approved by the office before discharge.
6. Development and provision of written materials regarding hearing loss to hospitals, and requires that hospitals distribute this information to all parents of newborns.
7. Creation of an at risk registry to include the identification of infants at risk for hearing impairment, hearing-impaired infants, and infants at risk of developing a progressive hearing impairment.
8. Development of a plan to coordinate early educational and audiological services for infants identified as hearing impaired, including establishing a state-wide telephone hotline and information for parents on locations that follow-up services can be obtained.
9. Creation of an advisory council appointed by the Governor.
There were many aspects of the program that needed further definition and delineation, and administrative rules were developed to fill in these gaps. Rules were published in July, 1993, and adopted in November 1993 (Appendix 5). The following are some of the highlights of these regulations:
1. The hearing screening will only be performed by board eligible or board certified physicians, or licensed audiologists with special training in ABR and/or OAE testing and in infant hearing testing, or by persons trained and supervised by the physician or audiologist. Guidelines for supervision including record review, direct observation, and accessibility were delineated.
2. Evoked otoacoustic emissions (EOAE) testing was added to ABR as an acceptable hearing screening test. Referral criteria for both tests were also prescribed.
3. Exemptions may be requested by hospitals unable to perform hearing screening on all at risk patients before discharge. Requests for exemptions will be considered on a site by site basis with requirements for the birthing site to have an alternative plan for referral of infants at risk for testing within 7 days of discharge.
4. Hospitals are required to refer infants failing screening to the child's primary care physician and an audiologist.
5. All birthing sites in the state were to be in compliance with the act by January 1,1994.
The program was entitled "Sound Start" to signify the advantages early identification would provide for those infants with hearing loss.
4.2.2.4 Hospital Participation
Hospitals were assisted in implementing the screening program in their facility by their regional task force and OPH. Task Force meetings were held to discuss what type of test (ABR or EOAE) might be best for each institution. Sales representatives were invited to regional meetings to demonstrate various models of test equipment.
The development of the Newborn Hearing Screening Report (Appendix 6), the form used by hospitals for each birth to report at risk indicators and screening test results was a unique collaboration between local, state, and national organizations. Individual hospitals and health providers assisted the Office of Public Health with the design and content of the form. Some hospitals piloted the Newborn Hearing Screening Report and provided suggestions. A four-part form able to be read by a scanning computer was developed so that extra manpower in the Office of Public Health was not required. In order to reduce paperwork for the hospitals, and assure that parents received required information, the back of the parent's copy of the Newborn Hearing Screening Report contained the general information the Law required be given to all parents of newborns. With permission of the American Academy of Audiology (AAA), the content of the parent information was the AAA brochure entitled "Your Baby's Hearing".
One concern that surfaced prior to the implementation of the law was regarding rural hospitals. The small number of births and paucity of specialized resources in some areas of the state, caused speculation that setting up a screening program would pose a hardship for those institutions. What actually resulted was motivating to all involved in the Sound Start program. Nurses and hospital administrators in small and mid-sized rural hospitals enthusiastically embraced the concept of infant hearing screening, and if funds were not available for the purchase of equipment through their institution, they found resources within their own communities to donate equipment. A comparison of hospitals according to birth population of those with equipment on site or access to equipment prior to Act 417 and after Act 417 revealed that the small and mid-sized hospitals in many rural parts of the state obtained equipment in larger percentages than hospitals with the most births and became a model for some of the larger hospitals. Another area that was tenuous was that of the 7 state-run Charity hospitals. These hospitals also surprised many in the state as they became some of the first large institutions to voluntarily establish universal screening. Three of the hospitals purchased and implemented EOAE screening, and were among the few in the state to initially use this test methodology.
The perceived hardship this law would pose for rural hospitals with very small number of births led to some opposition to the law. This opposition resulted in proposed legislation in 1993 to change Act 417 to make it voluntary rather than mandatory to perform the screening. Although this change to the law was soundly defeated, it did result in a compromise and exemption procedures were adopted. These guidelines provide a mechanism to defer the financial burden of providing the services for birthing sites unable to implement the hearing screening test prior to discharge The hospitals requesting exemptions were required to submit a detailed plan for referral of those infants needing testing to a proper site for screening within 7 days of discharge to try to assure that follow-up rates would be high. The plan included how the hospital will assist the family with transportation if necessary. This was considered critical in the rural areas where families may have to travel some distance to obtain a service other families in the state were able to access in the hospital. Most hospitals developed excellent plans for assisting families with resources needed to obtain appropriate services. Some of the initial reports from hospitals indicated a 70 to 100°/o follow-up rate for infants discharged before testing in the exempted institutions.
An unforeseen problem arose in hospitals where audiologists or technician staff were performing screening, and these testers were not available 7 days a week. Many infants were discharged within 12, 24, or 48 hours and could be admitted and discharged over a weekend or holiday period when hearing screening was not available. A procedure was also adopted for partial exemption of hospitals that were able to provide the hearing screening during the week, but were unable to provide coverage on weekends and holidays. In this instance, hospitals also had to submit a plan detailing what will happen if an infant must be discharged without the required hearing screening test. They were also required to assist the family with transportation, and assure that the test would place within 7 days of discharge.
As of June 1994, 12 hospitals were granted full exemptions and 10 granted partial exemptions. Only 5.3 % of the birth population of the state was represented in hospitals with full exemptions. The exemptions were effective for 1 year, and each hospital was encouraged to investigate ways that they might initiate the service in their facility so that next year an exemption may not be necessary. During the year of exemption, the regional task forces worked with each hospital to try to establish complete services in that hospital. This approach began to work and over the next four years, the number of hospitals with exemptions declined (appendix 7 ). In 1998 the State Advisory Council notified all hospitals that exemptions would no longer be given.
There are 73 hospitals in the state providing birthing services. These hospitals are considered birthing centers and are required to comply with the law. Another 26 hospitals do not have birthing services but may have occasional emergency births (from 1 to 8 births a year). They are not expected to comply with the law, however they have agreed to voluntarily utilize the Newborn Hearing Screening Report so that any high risk births will be reported, and follow-up may be initiated through the state-wide registry and tracking system. Ninety-five (95) hospitals have no births and are not required to comply with Act 417.
Implementation in individual hospitals was accomplished in many ways. The following are some of the creative ways the Regional Task Forces were able to encourage program development that was community-based, and dependent on available resources: contract with audiologists for supervision and/or screening; purchase/donation of automated ABR screener; assistance by OPH audiologists for supervision of the screening; private audiologists donation of supervision time in return for diagnostic referrals; university audiologists provision of supervision in return for obtaining needed experience for students; supervision by neurologists; and use of donated equipment obtained by OPH.
General hospital consent obtained at the time of admission is considered to be inclusive of routine care, such as newborn hearing screening.
4.2.2.5 Reimbursement
Reimbursement for the hearing screening tests was an important component for hospital administrations' acceptance of the screening program. The State Advisory Council along with other professional groups in the state requested that Louisiana's Medicaid agency allow reimbursement for the screening tests. Medicaid of Louisiana responded in 1993 by developing two new procedure codes, one for ABR screening ($50.00) and one for OAE testing ($25.00). This reimbursement looked favorable at first but was limited to a provider from outside the hospital and employees of the hospital performing screening were not able to obtain the reimbursement above the Medicaid per diem rate. Reimbursement issues continue to be a priority for the State Advisory Council as they work with the different state agencies and private insurance companies to try and obtain comprehensive coverage for hearing testing, diagnostic evaluations, and habilitative care.
4.2.2.6 Registry and Tracking
A state-wide registry and tracking system has been developed to track not only hearing impaired infants, but also infants at risk for hearing impairment, and infants at risk of developing a progressive hearing loss. Data from hospitals on all births recorded on the Newborn Hearing Screening Report is being submitted to the Office of Public Health. The information is then correlated with certain identifying demographics from the infant's birth certificate. Hospitals also have an option of electronically submitting the data through a computer program supplied at no charge by the Office of Public Health. A voluntary Follow-up Services Report (Appendix 8) has been sent to all audiologists in the state as well as all sites providing infant hearing screening after discharge. Results of these screenings, rescreenings, or evaluations are also submitted to OPH for input into the registry. Cross-matching will then determine which children did not have follow-up testing. The OPH tracks identified hearing impaired children, infants who fail or do not receive hearing screening prior to hospital discharge as well as infants and children at risk for progressive loss to assure they receive periodic testing. Reports are sent to the regional and local public health staff for follow-up and tracking (Appendix 9). Regional Task Forces play an integral part in the tracking in their area by assisting OPH staff to locate families, providing information to families about the importance of follow-up, and identifying resources that will assist families obtain the needed services.
The registry is designed to track children who have been found to have hearing loss, and what habilitation services they are receiving. Tracking is planned until age 5, when the children transition to school. In addition to providing statistics on infants found to be at risk and those receiving hearing screening before discharge, the registry will be able to determine the age of identification, and the age early intervention and habilitation services are begun. Statistical reports are available and are shared with other state agencies such as the Louisiana Commission for the Deaf and the State Department of Education for planning purposes. For the past three years the Sound Start Program has been working with the Vital Records department in OPH to include hearing screening information as part of the Electronic Birth Certificate (EEC). This updated version of the EBC has just recently been distributed and hospitals are beginning to submit the data electronically. The Vital Records Department of OPH currently receives birth certificate data electronically from 75% of the hospitals in the state. Training and technical assistance is needed for hospital personnel but this data collection method is felt to be an answer to some of the problems with the original system described later in the narrative.
4.2.2.7 Follow-up Services
Any well thought out screening program does not overlook the integral part played by follow-up services. Louisiana is fortunate to already have a fairly extensive range of services available. The Office of Public Health through the Children's Special Health Services Program provides medical, audiological, and hearing aid services to indigent children. There are many center-based early intervention programs in the state as well as a home-based Parent-Pupil Education Program through Louisiana School for the Deaf. ChildNet, Louisiana's early intervention program for infants and toddlers with disabilities (Part C of the Individuals with Disabilities Education Act), provides family service coordination and a range of services for eligible children. Each regional task force is developing a unique community-based follow-up system incorporating these state-wide services based on its own area's strengths and available resources.
4.2.2.8 Education
Public and professional education has been an on-going activity of the regional task forces as well as the State Advisory Council. Presentations have been made at professional state meetings of a number of different disciplines. Articles have been published in newspapers and state association newsletters for physician and speech and hearing professionals. Physician education is ongoing and as needs in this area are determined, training has been planned. Training is also available for audiologists feeling the need to become more proficient in infant testing and hearing aid fitting. The State Advisory Council, with the input and assistance from the 9 regional task forces, continues to plan for professional and public education about newborn hearing screening, diagnosis and early intervention, with emphasis on input from the statewide parent coordinator and parent members of the regional task forces. Since the implementation of Sound Start, OPH has annually sponsored speakers at the Louisiana Speech-Language-Hearing Association annual convention and at other times, inviting all stakeholders to learn about topics such as Parent Counseling, the Efficacy of Early Identification, Pediatric Hearing Aid Fitting and others. These efforts have served to build the knowledge base of the service providers, encourage universal screening programs in hospitals, and create a better awareness of the importance of early identification and intervention.
Universal hearing screening has been a goal for the state since the initial legislation was enacted. When most of the hospitals have equipment on site, the transition to universal will be somewhat easier than starting by screening all births. Requiring the screening of high risk births (approximately 10% of the birth population) is a small hurdle compared to universal hearing screening (100% of the birth population) but this change has been encouraged and fostered in the same way that the Sound Start Program has begun, allowing for diversity, with input from all areas involved and by being sensitive to community needs and unique abilities.
4.2.2.9 Current Efforts
In 1998, the State Advisory Council felt that the voluntary efforts of hospitals toward UNHS had reached a plateau and several hospitals even reversed their decision to perform universal screening and revert back to high risk screening due to cost cutting measures instituted by some of the large health corporations purchasing hospitals that were formerly locally owned and operated. Recommendations were made by the State Advisory Council to change Act 417 to require UNHS in all birthing hospitals. Relatively few changes were made to the initial legislation including:
1. Requiring screening on all births before hospital discharge
2. Penalties for noncompliance with the law
3. The addition of OAE as an acceptable screening test
4. Giving the State Advisory Council the authority to add or delete risk factors
See appendix for the complete changes enacted.
The amendments were submitted and passed unanimously as Act 653 of 1999 (Appendix 10). Currently the rules and regulations have been revised and proposed changes are being circulated for comment from stakeholders (Appendix II). It is anticipated that they will be published and adopted by June, 2000 requiring hospitals to implement UNHS by January, 2001.
The phenomena] success of the program to date (we consider it phenomenal that the state has gone from only a handful of hospitals providing high risk screening in 1993 to 83% of the hospitals providing on-site hearing testing of high risk infants before discharge after only 2 years and to 44% of hospitals providing voluntary UNHS by 1999) is based on its flexibility, its consideration of individual facility and community needs, and the tremendous support and efforts of a wide variety of individuals throughout the state. A graph showing the dramatic increase in the number of hospitals performing universal screening is depicted in Appendix II. The list of hospitals in Louisiana currently performing universal hearing screening is included in Appendix 13. All the participants in making this program a reality take pride in recognizing the efforts of governmental and community leaders in unifying state resources and developing areas of funding which heretofore have been untapped. Such activities as this can be looked upon with pride with the knowledge that many things can be achieved with effort and by working together.
4.2.2.10 Leadership
At the national level, Louisiana has taken a leadership role in several areas. Louisiana has been active in the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA) organization, with the Communicative Disorders Program Director, Linda Rose serving as president and membership chair. In addition, Ms. Rose organized a Task Force to establish a national data base for newborn hearing screening enlisting the participation of other states, university programs, private software and equipment manufacturers and federal agencies such as Maternal and Child Health Bureau(MCHB) and the Centers for Disease Control and Prevention (CDC). The resulting data base items have been utilized by the CDC to collect standardized data from an initial group of states with the goal of all states incorporating this data collection into their systems.
The Hearing, Speech and Vision Program Statewide Parent Coordinator, Mary Ann Veade, has several accomplishments that have demonstrated leadership in this area. Ms. Veade is the parent of a daughter who is deaf and has orthopedic disabilities. She has participated in a national project, Access for All, through Gallaudet University to encourage and assist nursery and day care centers to mainstream deaf children. She is an eloquent speaker and has been asked to tell "her story" at many venues, including meetings of local physician and to residents at the medical schools in New Orleans. She organized a deaf awareness activity with television coverage and donations from a local Kiwanis Club and the Volunteer and Information Agency. She represents the interests of parents on the State Advisory Council, the Louisiana Commission for the Deaf, the Board of Directors of the Bright School for the Hearing Impaired and the Board of Directors of Louisiana Concerned Parents for Deaf and Hard of Hearing Children. She has recently been informed that an article she has written about her daughter with special needs will be published in the February issue of Exceptional Parent magazine.
4.2.2.11 National Collaboration
Louisiana has also participated in both MCHB grants to national centers. In August, 1995 the National Consortium for Universal Newborn Hearing Screening (currently the National Center for Hearing Assessment and Management, NCHAM) provided a training in Otoacoustic Emissions testing for 17 hospitals in Louisiana. This training session and the subsequent support provided by NCHAM was directly responsible for several Louisiana hospitals voluntarily beginning universal screening. The state currently participates as one of the original 16 states in the grant held by the Marion Downs National Center. State representatives for screening, audiological diagnosis and early intervention have participated in all meetings held by the Marion Downs National Center; have enlisted the technical assistance and educational resources provided by the center and have contributed to the extensive needs assessment and data collection performed by the center for each state. These activities have served to continue to maintain interest in universal newborn hearing screening in Louisiana, have provided critical education to all entities involved and have allowed Louisiana to remain at the forefront on the national level among all states providing universal newborn hearing screening.
Because of Louisiana's early and continuing leadership role in the area of universal newborn hearing screening, Linda Rose has been asked to speak at national and state meetings, submit articles for publication and was recently selected as the DSHPSHWA representative to the Joint Committee on Infant Hearing. This type of experience and representation has allowed Louisiana to keep abreast of current and future technology, family issues related to UNHS and unique and innovative solutions to problems encountered.
4.2.3 Administration and Organization
Louisiana is unique because of its history of a comprehensive publicly Financed health care system to serve its large proportion of poor citizens. Louisiana relies heavily on its regional, state-supported hospital system and large network of Maternal and Child Health (MCH) Block Grant and other federal and state funded public health clinics to directly provide preventive, primary, and specialty health care for pregnant women, infants, children, and adolescents, as well as services for children with special health care needs, for its large medically indigent population.
The MCH clinics are managed through nine Regional Offices which in turn report to a Central Office of the Office of Public Health (OPH). The MCH and Children's Special Health Services (CSHS) Programs are housed within OPH's Division of Health Services, which also includes the Family Planning, Nutrition (including WIC), Social Services, and Genetics Programs. Formal staff meetings of the Division and Program Managers are held monthly, and informal coordination is done regularly. The Children's Special Health Services Program has nine Regional Offices through which the CSHS services, including audiology and otology, are delivered.
Louisiana, as one of the poorest and unhealthiest states in the nation, has the challenge of using its limited resources for the highest priority activities. Prevention services are underfunded as compared to other health care services.
Operating within the context of the Office of Public Health and the changing health care environment, the Title V Program maintains its commitment to decreasing mortality and morbidity and assuring access to primary, preventive and specialty health care services for Louisiana's maternal and child health population.
Through its system of parish health units, Title V is able to provide a statewide safety net of direct health services for women and children who are uninsured or have no access to other health care providers. With the largest number of poor children of any state. Title V resources continue be dedicated to direct health care services. Children with special health care needs have access to a comprehensive, family-centered, community-based network of pediatric specialists, including physicians, nurses, social workers, and other health care providers throughout the state through the CSHS regional clinics and community-based services.
4.2.3,1 Organizational Structure
The Department of Health and Hospitals is one of twenty departments under the direct control of the Governor. The Office of Public Health is one of the five major agencies within the Department of Health and Hospitals (DHH). The State Medicaid Agency, Bureau of Health Services Financing, is also located in this Department. The Title V programs, the Maternal and Child Health Program and Children's Special Health Services, are located in the Division of Health Services in the Office of Public Health. The Hearing, Speech and Vision Program is a subsection of both the MCH and CSHS program with staff providing services in both areas. The organizational charts in Appendix 14-18 illustrate the structure of the Division of Health Services Programs, DHH, and the departments under the Governor and the Maternal and Child Health, Children's Special Health Services and the Hearing, Speech, and Vision Program. The following State statutes are relevant to the Title V and Hearing, Speech and Vision program:
1. LSA-R.S. 46:971-973 Administration of MCH Services in State of Louisiana - Health Department Responsible
2. LSA-R.S. 17:2111-2112 Vision and hearing screening - Health Department and Department of Education Responsible
3. LSA-R.S. 40:1299 Mandated Genetics- Newborn screening - Health Department Responsible
4. LSA-R.S. 40:1299.111-.120 Children's Special Health Services - Health Department Responsible
5. LSA-R.S. 40:5 State Board of Health authority to create MCH & CC Agency
6. LSA-R.S 46:2261 The Identification of Hearing Impairment in Infants Law- Health Department Responsible
4.2.3.2 Program Capacity
Personal health services and local public health functions are provided by 105 OPH parish health units distributed throughout the State, except in New Orleans and Plaquemines Parish, which have their own independent health departments. OPH has nine Regional Administrators who supervise the health units, regional CSHS clinics, and regional health staff in their respective regions. CSHS has nine Regional Offices which serve as clinic sites.
CSHS provides family-centered, community-based, coordinated care for children with special health care needs and their families, including rehabilitation services for children receiving SSI benefits, through its network of300 pediatric subspecialty providers and facilities at the regional and local levels. Parents acting as family liaisons enhance the care coordination provided by the CSHS regional team and provide needed support. As CSHS strives to facilitate the development of systems of care for families, services are being merged with existing facilities or moved to local sites to complement the already existing service network established by the staff. The Hearing, Speech and Vision Program provides preventive, assessment and diagnosis and (re) habilitative services through the parish health units and the CSHS Regional Offices.
4.2.3.3 Other Capacity
The State MCH/CSHS Program staff include a separate Medical Director and Administrator for each program (Women's Health, Child Health, and CSHS). Staffing also includes a Statewide Maternity Nursing Consultant, Pediatric Nursing Consultant, CSHS Nursing Consultant, CSHS Social Work Consultant, CSHS Assistant Administrator, CSHS Statewide Parent Coordinator, Hearing, Speech, and Vision Program Director, Hearing, Speech, and Vision Statewide Parent Coordinator, MCH Assistant Administrator, Child Health Manager, Mental Health Specialist, PRAMS staff, MCH Epidemiologist, MCH Health Education Coordinator, Perinatal Substance Abuse Coordinator, Adolescent Health Coordinator and staff, and eleven clerical staff. The State Director of Medical Social Services serves as a consultant to both the MCH and CSHS Programs, The number of staff resources (FTEs) funded by the MCH and CSHS programs is approximately 220 and 82, respectively. In central office, staff are being hired to expand the epidemiologic and evaluation capacity in the program. A family representative has recently been hired to develop a statewide system of gaining parent input into MCH services and activities and to provide input into MCH policy, needs assessment, and customer satisfaction issues.
CSHS employs parents as Family Liaisons in all 9 Regional Offices. In addition to providing one to one family support and information, the Family Liaisons promote the issues critical to families with children with special needs in local communities and at a state level. The CSHS Statewide Parent Coordinator has been instrumental in providing input to policy and establishing links with other consumer organizations at the state and national level. The Hearing, Speech and Vision Program also has a part-time statewide parent coordinator devoted to speech, hearing and vision issues as described previously.
4.2.4 Available Resources
The Hearing, Speech and Vision staff consist of a program director, audiologist manager, statewide parent coordinator, clerical staff and regional audiology staff. As previously described, this staff took on the responsibilities of the Sound Start Program without additional positions or specifically allocated funding.
The Hearing, Speech and Vision Program Director, Linda Rose (acting) devotes approximately 15% of time to the Sound Start Program. Duties include: participation on the State Advisory Council as the OPH representative, collaboration with other state and federal agencies in the design and implementation of the Sound Start Program, monitoring compliance with the law and regulations; coordinating a system of service delivery among diverse representatives and fields; developing rules and regulations sensitive to the needs of all groups represented and negotiate consensus of standards for the state; plans for and projects needs, resources and advances in technology related to UNHS; designing and implementing the surveillance system to track infants and children with hearing loss and those at risk for developing hearing loss; and evaluating and monitoring service delivery. The Hearing, Speech and Vision Program Director received a promotion in 1998 to Children's Special Health Services Administrator. She continues to act as Hearing, Speech and Vision Program Director in addition to her responsibilities with CSHS until the position can be filled. Having Ms. Rose in the CSHS position in the state assures a high level of support for UNHS.
The Audiologist Manager Melinda Peat devotes 20 % of time to the Sound Start Program. Duties include: consulting with physicians, nurses, hospital administrators, etc. in the local region as well as statewide to monitor and provide technical assistance for the Sound Start Program; organizing and carrying out recommendations of the State Advisory Council and the Regional Task Force; collaborating with local and state public and private providers in implementing Sound Start; and developing best practices for audiology services in the Sound Start Program.
The Regional Audiologists devote 10 % of their time to the Sound Start Program. Duties include: collaborating and providing technical assistance to hospitals and providers in their region; organizing the Regional Task Force and carrying out recommendations; linking local services so that screening, diagnostic services and early intervention programs are seamless to parents; and assessing local needs and addressing underserved populations.
The Hearing, Speech and Vision Program Statewide Parent Coordinator, Mary Ann Veade, devotes 15 % of her time to the Sound Start Program. Duties include: attending State Advisory Council meetings, advocating for families in policy decisions, identifying and communicating parent's issues and needs to program administration and connecting individual families to community resources.
The organizational chart of the Hearing, Speech and Vision Program is included in Appendix 19.
The Hearing, Speech and Vision Program receives funds from Title V and the budget is approximately $3 million. This assures that the system developed can be sustained and that support in the areas of supplies, equipment and personnel can be maintained.
The Regional Audiologists each have sound proof testing facilities, immittance equipment capable of testing infants, auditory brainstem response diagnostic and otoacoustic emissions equipment. This assures that screening, assessment and diagnostic audiological testing can be performed as needed on infants and children who either cannot access or cannot afford private care. Central Office is equipped with 3 computer workstations networked in the OPH system which allows communication and exchange of information with other related programs such as vital records, MCH, CSHS, Genetics (metabolic screening), immunizations, the Pregnancy Risk Assessment Management and others. The Newborn Hearing Screening Forms are processed on a Scantron computer capable of optical scanning for reduction of clerical input. Two clerical staff in Central Office help support the Hearing, Speech, and Vision Program and Sound Start by data correction and entry into the registry, printing reports as needed and providing technical assistance to hospitals in the required reporting. The registry is stored on a large OPH server and is backed up daily in addition to receiving technical support and collaboration from the Division of Health Information. The program for the data base forming the registry, input into the system, integration with vital records and the production of reports was developed and is maintained by an independent computer programmer on contract to the Hearing, Speech, and Vision Program for over 10 years. Resources also include the extensive infrastructure of the OPH, the 9 Regional Offices, 9 CSHS Regional Clinics, 105 Health Units and other facilities where hearing, speech and vision services are provided.
Resources for audiological diagnosis and hearing aid fitting were recently evaluated under the MCHB grantee, the Marion Downs National Center. The statewide survey conducted indicated 206 audiologists licensed in the state of Louisiana with 15 sites offering diagnostic audiology services to infants and toddlers, ages birth through 36 months and 8 sites offering amplification fitting services to the same population. Resources for Early Intervention include the statewide Parent-Pupil Education Program under Louisiana School for the Deaf. This program includes parent educators who provide training to families of children who are deaf or hard of hearing in the home. In addition, the statewide survey found 12 sites providing early intervention services to deaf and hard of hearing children birth to 36 months of age. There are numerous public and private early intervention programs in many areas of the state that are not designed specifically for children who are deaf and hard of hearing and where some children receive services. There is less available in the more rural areas of the state. Since the initiation of the Sound Start Program, there has been a steady increase in the number of infants and toddlers enrolled in early intervention as demonstrated by the following enrollment figures for the Parent-Pupil Education Program:
1994-95 48 infants and toddlers
1995-96 42 infants and toddlers
1996-97 53 infants and toddlers
1997-98 66 infants and toddlers
1998-99 73 infants and toddlers
1999-00 60 infants and toddlers (Aug-Dec)
It is anticipated that 15 to 20 new families will receive services in the remainder of 99-00. There are currently 10 new referrals pending enrollment after the completion of Individualized Family Service Plans. Part of the work of this project will be to obtain this type of data from all early intervention programs in the state to plan for increased referrals.
4.2.4.1 Data and Tracking System
Data on UNHS and high risk screening is currently received by the Hearing, Speech and Vision Program in two ways: 1) by hard copies of the Newborn Hearing Screening form and 2)electronically in a file split from the Electronic Birth Certificate (EEC).
The Newborn Hearing Screening form was developed by the Hearing, Speech and Vision Program with input from the State Advisory Council and Regional Task Forces. It was designed to create the least amount of work for hospital personnel as possible. The form is contained in Appendix 6. The form contains only 6 items of identifying information and is able to be read by a Scantron optical mark reader so that data input is accomplished automatically. Four copies are included to be distributed as per regulations to the Department of Health and Hospitals, OPH; the hospital of birth; the primary care provider; and the parents. The reverse side of the parent copy contains information required by law to be given to all parents which includes normal growth and developmental milestones and symptoms of hearing loss which may develop later in the child's life.
After the forms are scanned into the data base or input manually if errors are present, the files are matched with birth certificate information in the DHH Mainframe computer to obtain the remainder of the information needed to tracking and statistics. Statistical reports are programmed into the registry software and can be obtained at any time.
Voluntary follow-up reports (see Appendix 8) are submitted to the Hearing, Speech and Vision program by audiologists throughout the state with parental consent. This data is entered into the tracking system so that follow-up screening and diagnostic evaluation results are recorded. The follow-up report also includes information on the date of hearing aid fitting and date of referral to early intervention services. Since this report is voluntary, it is estimated that only approximately 1/2 of the audiologists in Louisiana report results. This reporting could be increased and improved with continuing awareness activities and education of audiologists. The registry can then determine and generate a report on children who have not obtained recommended follow-up services and this information is sent to regional Hearing, Speech and Vision staff for tracking. Because of the delays in obtaining information, these tracking reports are many months old, making contact with these families extremely difficult.
The data registry has proved to be a major stumbling block for Louisiana's Sound Start Program. Some of the problems experienced have been:
1. A majority of forms received from hospitals were unreadable by the Scantron computer requiring enormous manpower for manual entry. There is currently a delay of over 1 year in forms being entered into the system.
2. The identification information on the forms is not sufficient for matching with the birth certificates. The current match rate is 70%, up from initial rates of40%. This is due to several reasons, such as name changes, incomplete information and differences in hospital policy in obtaining the required information.
3. The delays in obtaining complete information because of inability to match with the birth certificates and forms not being processed in a timely manner has resulted in an ineffectual tracking system.
Because of these reasons, two other avenues of data input have been investigated. The Louisiana EBC began to update the computer program 3 years ago. At that time, a proposal was made and accepted to include the Newborn Hearing Screening Form information as an additional page. Numerous delays and reprogramming pushed the implementation date to November 1999. Currently information is being received in this manner from an initial group of hospitals with up to 75% of hospitals due to implement this procedure in the coming months. This new method will significantly improve data collection allowing for correct, updated files to facilitate tracking. Training and technical assistance to hospitals is needed to optimize reporting.
Another area that has been investigated is a linkage with the newborn metabolic screening data base. Initial matches with this data base were not as successful as the birth certificate matches and have not been pursued, however this linkage is worth revisiting because this data is more current than the birth certificate, arriving at OPH within 2 to 3 days of birth, whereas some birth certificate information can be received several months after the birth.
4.2.5 Identification of the Target Population and Service Availability
The ReliaStar State Health Rankings 1996 (formerly called The Northwestern National Life) ranked Louisiana last in overall health, making Louisiana the least healthy state in the nation. Louisiana's poor ranking stems from its high prevalence of smoking, high rate of violent crime, low high school graduation status, high unemployment, low access to primary care, high worker disability status, high rate of heart disease, high rate of overall mortality rates, and high rate of premature deaths.
The Louisiana Center for Health Statistics (Vital Statistics) utilizes 1997 population estimates generated by the Bureau of the Census. According to 1997 estimates, the total population of Louisiana was 4,351,769, which represents a 3.0% increase from 1990 Census data. In terms of racial groups, 66.2% were White, 32.1% were Black, which was more than twice the national figure of 12.7%, and 1.6% were reported as Other. The total number of women of childbearing age went from 1,001,270 in 1990 or 27.3% to 1,005,270 or 23.1% in 1997.
While the overall number of live births has declined 24 percent since 1980, there has been little change in the number of reported live births over the past several years. In 1996 and 1997 there were 65,186 and 65,947 respectively. These numbers indicate a 0.9% decrease from 1995 to 1996 and a 1.2% increase from 1996 to 1997. While the infant mortality rate in Louisiana has had an overall downward trend, the black infant mortality rate remains approximately twice that of white infants.
Louisiana is a predominantly rural state. Only 13 of the 64 parishes have more than 70% of its population considered urban. Seven of these parishes are located in the greater New Orleans Metropolitan area. According to 1990 census data Louisiana has an overall poverty rate of 23.6%. Louisiana continues to have one of the highest poverty rates in the United States. In 1996, 21.2% of Louisianians, approximately 912,513 people, lived in poverty. Louisiana has the fifth highest poverty rate of all the states (Louisiana State of the State Report 1997). The 1999 National Kids Count Data Book reports Louisiana as having the highest child poverty rate among the 50 states. Thirty -two percent of the children in Louisiana lived in poverty in 1996 as compared to 20% nationally. According to census data, 31.4 % of children 18 and under (56.5% of blacks; 15.4% of whites) live in poverty. Thirty-three percent (33.%) of children under five years old live in poverty (60.5% of blacks; 16.1% of whites).
During the state 1997/1998 Fiscal year, 730,898 Louisianians were recipients of Medicaid. This represents roughly 18.1% of the population (Louisiana Medicaid Program Report, State Fiscal Year 1997/1998). In FY 1997-98, 59% of all Louisiana Medicaid enrolled individuals were under age 21. Overall there has been an 8% decrease in the number of Medicaid recipients. According to the State of the Stale Report 1996, over one-third of all children growing up in the state are on Medicaid. Private sector involvement in the health care of low-income women and children has increased during the past few years due to increases in reimbursement by the Medicaid program. Although many of the physicians in the rural areas of the state accept Medicaid assignment, many in the urban areas do not. Some physicians accepting Medicaid place a limit on the number of Medicaid patients they will serve. There are also discrepancies among specialties, i.e. more private obstetrical providers accept Medicaid than private pediatricians. Pediatric sub-specialists providing care to children with special healthcare needs are concentrated in the teaching medical centers in New Orleans and to a lesser degree, Shreveport. There are very few located in the more rural areas of the state.
According to die U.S. Census Bureau (1990), Louisiana has the 6''' highest prevalence in the nation (29.08%) of disabilities among persons less than 18 years of age. The number of children receiving SSI benefits has also increased from 1991 to 1996 (123% increase). In 1996, 38,590 children Louisiana received SSI benefits. Since persons with disabilities use significantly more medical services than those without disabilities, the high prevalence of disabilities among children in the state, coupled with die fact that the percent of uninsured children in Louisiana is approximately 20%, indicates a tremendous need for health care services and resources for children with special health care needs.
Louisiana is a poor state with a high prevalence of disabilities as described previously. Louisiana also has a higher percentage of minority populations with unfavorable healthy outcomes. The target population for screening is all children born in the state. Assuring access to care is a major challenge to populations who do not take advantage of prenatal and other free services offered by OPH.
The target population for follow-up services will be those children identified in the screening process as needing further testing and who do not obtain diagnostic, habilitative or early intervention services. The registry already has the capability to print reports of those children who are in need of follow-up which can be released to regional OPH staff for tracking. This process has proven to be difficult as identification and location information on families is incorrect or outdated and contacting families has proven to be largely unsuccessful.
The needs, special problems and barriers of the target population are unknown but postulated to fall into several categories such as poor communication, lack of education, lack of coordinated efforts among agencies and no access to services. One of the main objectives of this project is to identify barriers to this system of care, present these concerns to the stakeholders and develop solutions.
There is a network of existing services and support available at community, state, regional and national levels in all aspects of the system. They include:
1. Screening. All 73 birthing hospitals, pediatricians and most licensed audiologists are aware of and currently participate in the Sound Start Program, in hospital screening programs. Support includes the nursery staff who have been extremely positive about performing the screening and advocating for universal screening.
2. Diagnosis. Pediatric audiologists in the state are well aware of the program and many participate in Regional Task Forces and other committees to improve the system. Otolaryngologists throughout the state have supported the legislation and are involved in screening and diagnosis at hospitals and in their private offices. The CSHS program offers audiological and medical diagnosis to medically indigent children and some services are available through local school boards and the state run charity hospitals for no charge.
3. Early Intervention Programs. Many local, private and public early intervention programs are available throughout the state. The state-wide Parent-Pupil Education Program under the Louisiana School for the Deaf provides parent training in the home with teachers of the deaf. The Part C of the Individuals with Disabilities Education (IDEA) Act in Louisiana is called the ChildNet program and provides special instruction and therapy for deaf and hard of hearing infants and toddlers.
4. Funding for Hearing Aids. The CSHS, program provides hearing aids and accessories to medically indigent children eligible for services. ChildNet will also provide funds for hearing aids, regardless of income. A few private insurance companies will cover the costs of aids and the Medicaid program provides reimbursement at $500. per hearing aid.
5. Family Support. There is a statewide parent support organization with offices in each region entitled Families Helping Families. Family Voices is a national parent organization with regional offices in Louisiana. Mary Aim Veade, Statewide Parent Coordinator provides individual family support and consults with Parent Liaisons and the Regional Audiologists regarding parent support activities in each region. Care coordination is provided by ChildNet and the Regional CSHS offices.
6. Data collection and analysis. The MCH program currently has a grant to develop the Division Epidemiology services and the staff will support and collaborate with this project. In addition, Louisiana leads and participates in the Task Force for a National Data Base for Newborn Hearing Screening. The state has participated with CDC in a cost analysis study. Other departments within OPH that provide guidance, collaboration and support are Vital Records, Information Services and the Genetics Program.
4.2.6 Needs Assessment
CSHS is currently performing a needs assessment in fulfillment of the MCH Block Grant. It consists of a parent satisfaction and needs survey and 5 focus groups. Over 1700 surveys have been received and are being analyzed. The results will provide general needs of families with children who have special health care needs and some insight to needs that might exist in the Sound Start system. One issue that seems to be prevalent at the initial examination of this data is availability of information to parents about services and resources in their area.
A brief needs assessment was performed by the three statewide coordinators designated by the Marion Downs National Center as part of the MCHB grant as a technical assistance center. In 1997, the issues were similar to the ones expressed in this proposal: need for education and public awareness; need to improve the tracking system; need to establish better regional task force follow-up systems; and need to institute outcome measures into early intervention programs.
A needs assessment of individual families is proposed by this project to be performed by the System Development Coordinator in collaboration with the Hearing, Speech and Vision Program Statewide Parent Coordinator. This will determine any unmet needs of families, barriers and special problems to overcome and will be presented to the State Advisory Council and Regional Task Forces to develop strategies to meet needs and overcome barriers. Some suspected needs are; to develop training for counseling for screening failures, develop guidelines for audiological evaluations, develop resources for transportation, determine the most convenient times for families to have follow-up services, assure that all parts of the system are family- friendly and culturally competent.
The state, regional, local and national strengths and resources that can contribute to addressing unmet needs and barriers to care are: the State Advisory Council, Regional Task Forces, State Depts of Health and Education, Marion Downs National Center, NCHAM, early intervention programs, parent and consumer groups, the Deaf community and resources within OPH with expertise in family issues, needs assessment, data analysis and surveillance.
4.2.7 Collaboration and Coordination
Many of the existing methods of collaboration have already been described. Chart 1 indicates the level and the entities included in current collaboration and coordination.
Planned methods of collaboration that will be instituted as a part of this project are:
1. Dept of Education, Part C and Deaf and Hard of Hearing Services-data collection on current and past age of identification, number of children enrolled in Part C, and assistance with tracking and follow-up.
2. Vital Records and Genetics- combined, relational and accessible databases.
3. Continued collaboration and technical assistance from MCHB grantee.
4. Increased input from consumer groups: deaf adults, family advocacy groups, and hard of hearing adults.
5. Collaboration and assistance from insurers, public and private and the Dept of Insurance.
6. Hospitals and CDC to determine costs of services.
7. National Center for Cultural Competence (currently involved with project for CSHS) to advise and provide assistance in instituting cultural competence as an integral part of the system.
8. Division of Health Services Epidemiology Section for technical assistance in designing the needs assessment, collection of registry data and analysis of data.
4.2.8 Goals and Objectives
The goals and objectives of the proposed project are listed in Table 1. The overall goal is: To assure a sustainable, statewide, comprehensive, family-centered, culturally competent, seamless, community based, system of services for early identification and habilitation of deaf and hard of hearing children and their families in Louisiana. The objectives are:
1. Establish and implement mechanisms for coordinating screening with diagnostic services, family support, medical home, early intervention programs and financial reimbursement opportunities.
2. Identify barriers and unmet needs and develop resources and solutions for an effective system of services.
3. Strengthen communication and education with all stakeholders in the Sound Start Program.
4. Improve data collection, accuracy, analysis and distribution among all parts of the system, including screening (hospitals), diagnostic services (audiologists and physicians), and early intervention services.
These goals address the major system problems and barriers to care that have been experienced thus far in Louisiana's Sound Start Program. The foundation for many of these areas is already in place and all that is needed is a consistent effort at coordination and needs assessment by persons devoted to UNHS.. A sustained effort at system development for the 4 years of the grant period should result in a successful outcome to the goal of this project. The system then can be monitored and supervised by current staff of OPH and the State Advisory Council.
4.2.9 Required Resources
Two contractual part time positions are required for fulfillment of the objectives of the project. A project coordinator will be responsible for overall system development, improvement of data collection and analysis, developing collaborative working relationships with other state and private agencies, plan educational activities, investigate sources of funding and provide technical assistance to providers. A systems development coordinator will be responsible for conducting a needs assessment in 2 regions of the state, developing a model system, establishing a resource directory of services, identify underserved populations and increase parental and consumer input into all Sound Start activities including policy development and state and regional groups.
To support the positions, funding for regular field travel and travel to out of state meetings is required. Both positions will be required to travel throughout the state to attend meetings in the regions, confer with hospitals, agencies and providers and obtain input from parents regarding unmet needs. To facilitate ease of data entry, provide a platform for training presentations and awareness activities, and have information and resources available on site, 2 laptop computers are required. In year 2 of the grant, printing costs for brochures, guidelines and other materials are included. These products will be the result of activities conducted in the first three years.
State budgetary and OPH reporting by project code for expenditures assure that all expenses will be utilized for the purposes specified in this proposal. A new project code will be established for this project, if awarded, and tracking and auditing will be easily accomplished.
4.2.10 Project Methodology
The methods that will be employed to accomplish the goal and objectives are outlined in the Project Activities Time Allocation Table and the distribution of duties in the Personnel Allocation Chart.
The Program Coordinator will be required to maintain a constant communication and collaboration with all stakeholders in the process to put a system in place, although many of the duties are process oriented such as facilitating meetings, planning training activities, etc. The Final outcome measures of the improvement of the age of identification, age of receiving amplification and age of enrollment in early intervention will be the standard to which this position is held. To obtain quality data in these areas, the individual in this position will also have as a major priority to improve data collection and analysis methods.
The Systems Development Coordinator in close collaboration with the Hearing, Speech and Vision Program Statewide Parent Coordinator will investigate the gaps and unmet needs in the system by focusing on individual families. Promotion of family and consumer input to all aspects of the system will be a top priority of this position. This type of consistent parental and consumer involvement will strengthen the system and provide solutions to barriers to care not identified by professionals.
Neither position will be expected to perform these tasks alone. The rich resources of the OPH, including parent participation, MCH, CSHS, epidemiology, information systems, vital records, genetics and surveillance expertise as well as the previously developed partnerships with leading state and local professional organizations, individual providers, other state agencies, and the private sector including hospitals will allow for tremendous support, contribution of knowledge, and proficiency and efficient operation.
4.2.11 Plan for Evaluation
1. Impact of the project will be evaluated by collection of outcome and needs assessment data including: data items from the National Data Base (see appendix 18), including the age of identification, the age of diagnosis and the age of hearing aid fitting, and the age of early intervention. The needs assessment data obtained will be submitted to various groups to develop strategies to overcome barriers and address unmet needs. A system will be developed so that a continuing needs assessment can be performed by those tracking and performing follow-up activities, with continuous feedback to the Regional and State Committees, Task Forces and Advisory Councils.
Table1. Goal: To assure a sustainable, a statewide, comprehensive, family-centered, culturally competent, seamless, community-based, system of services for early identification and habilitation of deaf and hard of hearing children and their families in Louisiana
| OBJECTIVES | ACTIVITIES (Process) | EVALUATION (Outcome) |
| 1. Establish and implement mechanisms for coordinating screening with diagnostic services, family support, medical home, early intervention programs and financial reimbursement opportunities. | 1. Facilitate State Advisory Council Meetings, Regional Task Force Meetings, State Committee meetings, develop agendas, speakers and topics, provide support to members, develop reports as needed for each group, and carry out recommendations.
2. Develop collaborative working relationships with other state and private agencies to facilitate system development. These may include: State Dept of Ed., State Dept of Insurance, Louisiana Hospital Assn., Medicaid, consumer and advocacy groups, the Deaf community and others. 3. Assist the State Advisory Council in developing information and guidelines to distribute to hospitals, physicians, audiologists, early intervention programs and others regarding program guidelines and data reporting. 4. Investigate all sources of funding and advocate for reimbursement for screening, diagnosis, and habilitation services. 5. Provide technical assistance to and monitor hospitals for compliance with current law and rules and regulations and report to State Advisory Council. 6. Collaborate with and provide information to Regional Task Forces, hospitals, local agencies and others in the needs assessment and dissemination of results. |
Number of meetings held during grant year.
Participation in meetings & projects by other agencies, the private sector and parents/consumers. Number of formalized guidelines or information packets, brochures, etc. Developed and distributed. Data items: |
| 2. Identify barriers and unmet needs and develop resources and solutions for an effective system of services | 1. conduct a needs assessment in two regions of the state (one urban and one rural) regarding barriers to care and unmet needs for families of children who are deaf or hard of hearing.
2. Develop model system 3. Identify underserved populations in the needs assessment and investigate optimal outreach activities. |
Report of needs assessment, including barriers to care and underserved populations. Number of groups/meetings where results of needs assessment are discussed and their results. Data items in Objective 1. |
| 3. Strengthen communication and education with all stakeholders in the Sound Start Program | 1. Public and Professional education activities.
2. Develop a regional clearinghouse and/or resource directory of services for each of the two regions in conjunction with local family support agencies. 3. Develop parent support groups, adult mentor groups and other support activities for families in the development of the system. 4. Increase and foster parental and consumer input into all activities related to the system. |
Number of education activities held and results of their post-evaluations.
Production of resource directory. Number of parent support groups formed. Number of parents/consumers on State Advisory Council committees and Regional Task Forces. |
| 4. Improve data collection, accuracy, analysis and distribution among all parts of the system including screening (hospitals), diagnostic services (audiologists and physicians) and early intervention services. | 1. Develop and implement a plan to improve data collection and analysis in conjunction with MCH Epi Section, OPH Vital Records and Genetics Programs.
2. Develop reports for project evaluation, cost analysis, MCH Block Grant indicators and to state agencies and legislators. |
Data items in Objective 1
Reporting on National Performance measure for UNHS on Block Grant Reports produced for other groups |
Chart 1: Organizational Relationships-Louisiana's Sound Program
| Formal Relationship by Statute or Membership/Participation | Collaboration and Participation | Initial Collaboration |
| State Department of Education, Part C; Deaf and Hard of Hearing Services | Local State and Private Early Intervention Programs | Louisiana Bureau of Health Care Financing (Medicaid) |
| Louisiana Commission for the deaf | Louisiana Speech-Language-Hearing Association | Self Help for Hard of Hearing (Louisiana Chapter) |
| National Joint Committee on Infant Hearing | Louisiana Medial Society | Deaf Action Centers |
| Task Force for a National Data Base for Newborn Hearing Screening | Louisiana Chapter of American Academy of Pediatrics | Louisiana Association of Concerned Parents |
| Louisiana Chapter of the American Academy of Otolaryngology, Head and Neck Surgery | ||
| University Speech and Hearing Programs | ||
| Louisiana Association of the Deaf | ||
| Louisiana School for the Deaf, Parent Pupil Education Program | ||
| Family Voices | ||
| DSHPSHWA | ||
| NCHAM | ||
| Centers for Disease Control and Prevention (CDC) | ||
| Louisiana Hospital Association |