South Carolina MCHB Project
Project Title: Integrated Services for Children with Special Healthcare Needs
Project Number: 93.110ZZ
Project Director: Susan Jackson Phone: 803.898.0783
Organization Name: South Carolina Department of Health and Environmental Control
Address: BabyNet Branch, Division of Community Health
Mills/Jarrett Building, Post Office Box 101106, 1751 Calhoun Street
Columbia, South Carolina 29201
Contact Person: Susan Jackson Phone: 803.898.0783
Fax: 803.898.0389
Project Period: 4 Years From: 2000 To: 2004
2.1.1 Organizational Setting
The newborn hearing screening and intervention advisory council (First Sound) activities are coordinated through BabyNet (Part C) Division within the Bureau of Maternal and Child Health (Title V) as part of Public Health Services with SCDHEC by Susan Jackson, Program Coordinator.
2.1.2 Purpose
The purpose of the First Sound project is to fully implement a sustainable state-wide universal newborn hearing screening program which provides for (1) physiological screening prior to hospital discharge in all birthing hospitals in South Carolina; (2) coordination with the child's medical home and family support; (3) audiological evaluation by 3 months of age; and (4) appropriate early intervention by 6 months.
2.1.3 Problem
The problem is that over 70% of South Carolina birthing hospitals have not yet instituted universal newborn hearing screening, detection, and referral procedures. The National Institutes of Health [NIH](1993), Joint Committee on Infant Hearing (1994,2000), American Academy of Pediatrics (1999), Healthy People 2000, and Healthy People 2010 all endorse the goal of early detection of and intervention for infants with hearing loss through integrated interdisciplinary state systems of universal newborn hearing screening, identification, and family centered intervention. Hospital-based universal newborn hearing screening is essential to the creation of a successful system of identification and intervention in South Carolina.
2.1.4 Goals and Objectives
The major goals and objectives of First Sound are to: (1) institute universal newborn hearing screening, detection, and referral procedures in all South Carolina birthing hospitals; (2) integrate universal newborn hearing screening, detection, and referral procedures into current service delivery systems so that hearing loss is identified by 3 months of age and interdisciplinary intervention begins by 6 months of age; (3) establish a statewide reporting procedure for hospitals, audiologists, and early interventionists; (4) establish a statewide system of monitoring and measuring effectiveness of screening, detection and intervention; and (5) make available reports and measurement of program evaluation throughout the state, specifically to physicians in the disciplines of obstetrics, neonatology, or the care of newborns and infants, to consumer groups, managed care organizations, legislators, other third party payers, and the media.
The First Sound Advisory Council will advise and assist in: (1) the assessment of all SC birthing hospitals' readiness and interest in program establishment between June 2000Dec 2000; (2) the creation of a plan for statewide implementation in 100% of SC birthing hospitals between Jan 2001-March 2001; (3) the full program implementation in 100% of SC birthing hospitals by March 2003.
2.1.5 .Methodology
First Sound activities are guided by the First Sound Advisory Council. The goals set forth by the Advisory Council will be achieved by: (1) evaluating a 14 month pilot project; (2) sharing pilot results with interested parties; (3) teaming pilot results with legislation that mandates the institution of universal newborn hearing screening, detection, and intervention programs; (4) developing a plan for statewide implementation, reporting, tracking, and evaluation based on pilot evaluation; and (5) providing technical assistance to hospitals and providers during program set-up and implementation.
2.1.6 Evaluation
The American Academy of Pediatrics and the Joint Committee on Infant Hearing have both outlined the quality indicators and associated benchmarks that serve to monitor compliance and outcomes of early hearing detection and intervention programs. The First Sound Advisory Council will review these recommended performance measures and make recommendations for additions to the program's current quality assurance tool.
2.1.7 Teat of Annotation
South Carolina's First Sound project seeks to prevent or mitigate the developmental delays and academic failures associated with hearing loss in children by instituting universal newborn hearing screening, detection, and intervention programs in all birthing hospitals in the state. The mufti-agency, mufti-disciplinary, and consumer members of First Sound's Advisory Council have developed program protocols, standards of care for program providers, reporting procedures, and tools for monitoring and measuring program effectiveness. These items have been essential to the success of First Sound's pilot project. The Advisory Council will pursue its goal of statewide implementation by supporting legislation requiring all birthing hospitals in South Carolina to institute universal newborn hearing screening, detection, and referral procedures with follow-up and intervention programs through Part C and Title V.
2.1.8 Key Words
Universal newborn hearing screening, detection, and intervention program
2.2.1 Purpose of the Project
The purpose of the First Sound project is to fully implement a sustainable state-wide universal newborn hearing screening program which provides for (1) physiological screening prior to hospital discharge in all birthing hospitals in South Carolina; (2) coordination with the child's medical home and family support; (3) audiological evaluation by 3 months of age; and (4) appropriate early intervention by 6 months. Over 70% of South Carolina's 51 birthing hospitals have yet to establish universal newborn hearing screening programs in spite of the call to do so from the National Institutes of Health (1993), the Joint Committee on Infant Hearing (1994,2000), the American Academy of Pediatrics (1999), Healthy People 2000, and Healthy People 2010, which is the rationale for First Sound's proposal. First Sound recognizes that the developmental delays and academic failures associated with hearing loss can be prevented or mitigated with a comprehensive, integrated system of universal newborn hearing screening; identification, and intervention through interagency collaborations and inter-disciplinary treatment approaches, with accessibility for all families and in a cultural competent manner to the extent possible. Hospital based universal newborn hearing screening is essential to building a comprehensive system in South Carolina This proposal supports the leadership to carry out the task of full implementation.
First Sound sought to demonstrate the ability of South Carolina hospitals, physicians, audiologists, early interventionists, and other providers to develop and implement universal newborn hearing screening, identification, and intervention through a 14 month pilot project . Beginning in September 1997, eight South Carolina birthing hospitals instituted universal newborn hearing screening. Pilot data demonstrates the following: nearly 95% of newborns were screened before discharge with the cost of each screening ranging between $25 and $35, the referral rate for formal audiological testing after screening did not exceed 4%, and 93% of infants with hearing loss were identified and intervention initiated by 6 months of age. The pilot was also consistent with national findings in that over 50% of the infants identified in South Carolina with a hearing loss had no risk factor. See Appendix C for Evaluation Tracking Data and Findings. This point emphasizes the need for universal newborn hearing screening in South Carolina as the majority of birthing hospitals screen by high risk registry alone. The successful integration of pilot program protocols with existing community-based service delivery systems is also evident in the timely manner in which children with hearing loss were identified and entered into the early intervention system. While analysis of the pilot is not complete, these points demonstrate the ability of South Carolina to successfully perform universal newborn hearing screening, detection, and intervention programs.
This is an application for full implementation of a sustainable state-wide universal newborn hearing screening program which will provide for (1) physiological screening prior to hospital discharge in all birthing hospitals in South Carolina; (2) coordination with the child's medical home and family support; (3) audiological evaluation by 3 months of age; and (4) appropriate early intervention by 6 months. Statewide implementation will provide early detection of hearing loss in all newborns at the birthing facility or as soon after birth as possible; enable all newborns and their fan-Lilies/care-givers to obtain needed multi-disciplinary evaluation, treatment, and intervention services at the earliest opportunity so that development of the auditory system of each newborn is maximized; and integrate universal newborn hearing screening with early intervention services for all children birth to 36 months.
2.2.2 Organizational Experience and Capacity
SCDHEC first initiated efforts to institute universal newborn hearing screening, detection, and intervention (UNHSDI) in April of 1997 by forming the HEAR (Hearing Early and Responding) Team. This action was in response to (1) information learned at the annual conference of the Director of Speech and Hearing Programs in State Health and Welfare Agencies and (2) a statewide assessment survey that revealed UNHSDI at only one hospital (Tuomey). The HEAR Team membership includes: Title V, Part C (BabyNet), a pediatrician, a nurse, audiologists, South Carolina School for the Deaf and Blind, representative from Tuomey's program. The Team considered the feasibility of UNHSDI in SC by compiling a list of important issues, essential system components, critical endorsements needed from individuals and organizations, and barriers to overcome before implementing. The HEAR Team sought to: (1) create a team charter, (2) form a multiagency, multi-disciplinary, and consumer represented advisory council, and (3) to guide statewide implementation with technical assistance from national sources.
The Hear Team charter set as its objective to: Develop a screening and referral system to implement universal newborn hearing screening in South Carolina Components of the initiative included
The charter's directions stated that the Team was to develop a communication network; initiate a meeting schedule; determine tasks to be accomplished; and assign responsibilities. A monthly progress report was to be submitted to HEAR Team Leader.
It's methodology stated that two leaders would guide team activities: the Chair of the State Newborn Hearing Screening Committee, First Sound Advisory Council and the HEAR Team Leader. An overall Implementation Plan was to be developed through the First Sound Advisory Council. Team members were assigned responsibilities in the plan. The Program Coordinator was to be available to all Team members for assistance. The charter continues to be the foundation of all First Sound project activities.
The HEARTeam based advisory council membership on recommendations of the Marion Downs National Center for Infant Hearing. The following organizations, agencies, and individuals accepted membership in the advisory council: SC Chapter American Academy of Pediatrics, SC Hospital Association, SC Association of Audiologists, Governor's Office, Dept. of Health and Human Services, SC Dept of Education, SC School for the Deaf and Blind, Dept of Disabilities and Special Needs, March of dimes Birth Defects Foundation, SC Association of the Deaf, SC Alexander Graham Bell Association, SC Developmental Disabilities Council, SC Perinatal Association, audiologists, a neonatologist, a ENT physician, speech pathologist, family members and consumers, SCDHEC BabyNet (Part C), SCDHEC Children's Rehabilitative Services (Title V), SCDHEC Women and Children's Services. See Appendix F for The First Sound Advisory Council Membership Listing. The Advisory Council first met in September of 1997. After naming the. project First Sound, priority was placed on the creation of a pilot project as the successful implementation would require charter objective components to be addressed. This would also provide SC data to support legislative efforts. The following committees were formed to achieve readiness for the pilot project: data/tracking, early intervention, education, funding, and legislative. Preparation and planning were complete by April 1998. See Appendix B for First Sound Screening and Follow-up Protocols and Flow Chart. Selection of pilot sites. began with focus on community resources rather than individual hospital resources alone. Criteria determined germane for selecting and assessing the hospital community is as follows: (1) geographic mix of the state, (2) level of perinatal care, (3) receptiveness of hospital's CEO's, administration, and business staff, (4) readiness of community resources- physicians, pediatric audiologists, early intervention system, (5) willingness of hospital to contribute to data bank. Eight (8) sites were selected and program implementation began in May 1998. The pilot began in October 1998 and continued through December 1999. SCDHEC coordinated bi-monthly meetings of the First Sound Advisory Council (FSAC) in order that pilot progress could be monitored. FSAC continues to meet on a bimonthly basis to evaluate the pilot to plan for all aspects of the legislative bill introduction and to move toward full implementation. Although South Carolina is not receiving funding for its initial efforts, First Sound has received technical assistance from the Marion Downs National Center for Infant Hearing and has participated in national meetings with the other states who are moving toward full implementation. In the beginning, First Sound placed emphasis on planning and development of forms, protocols and process. Other states have requested samples of our work. Marie Meglen, South Carolina's former Title V Director (recently retired), played a key role in the national efforts related to the health of mothers and children for many years. Under her leadership, South Carolina lead the country in the overall rate of immunizations for children under the age of 2. SCDHEC's new leadership decision to return to an organizational structure uniting all women and children's programs in a Bureau of Maternal and Child Health reflect its renewed support for addressing issues related to mothers and children in a coordinated and united manner.
2.2.3 Administration and Organization
The newborn hearing screening and intervention advisory council (First Sound), consisting of multi-agency and multi- disciplinary as well as consumer members has been established under the jurisdiction of the. South Carolina Department of Health and Environmental Control (SCDHEC). First Sound activities are staffed out of SCDHEC's BabyNet division (Part C) by Susan Jackson. Organization charts found on next page show the organizational relationship between Part C and CSHCN programs in SCDHEC. Through formal contracts BabyNet (Part C) and CSHCN provided financial aid to pilot hospitals.
See Appendix A for a copy of a hospital contract.
[FLOWCHARTS]
2.2.4 Available Resources
Currently, the full-time Program Coordinator and part-time Data Manager for the First Sound pilot are located within the BabyNet (Part C) Division within the Bureau of Maternal and Child Health (Title V) as part of the Public Health Services of the South Carolina Department of Health and Environmental Control. Part C and CSHCN Programs have provided start-up funds for pilot and will continue to provide office space, support staff, supervision, equipment and supplies until other funding is found to sustain the program. Additionally, a request for state funding has been sought in 2000 legislative session to help support some of the hospital screening costs.
2.2.5 Identification of Target Population and Service Availability
All newborns in South Carolina are the target population of the First Sound project. Many obstacles to achieving and maintaining good health outcomes exist for SC infants. The estimated birth rate falls between 50,000 -51,000. The population in South Carolina is 31 percent minority, consisting primarily of Blacks, American Indians, Asian and Pacific Islanders, and persons of Hispanic origin, with Blacks accounting for 98 percent of minorities in the state. However, there is a growing number of persons of Hispanic origin residing in the state. In recent years, some counties have experienced a 74 percent increase in the Hispanic population. These changing demographics as well as the anticipated continued growth in the state's diverse population point to the importance of addressing health disparities.
Lower income Americans (of which the minority groups comprise a substantial number) are much less likely to have health insurance. They tend to seek treatment later and may not always receive the most aggressive treatment options. However, financial access is not the only barrier. In addition to affordability, if the gap is to be closed, services must be available, appropriate and acceptable. For some populations, particularly in rural areas, geographic isolation; lack of health care providers and services; lack of culturally competent data collection, planning and delivery of services; transportation; child care; family stress; and ineffective outreach and education strategies are among the factors that reduce health care access for minority citizens. (SCDHEC: The Health of South Carolinians, 1999)
2.2.6 Needs Assessment
South Carolina participated in statewide assessment surveys conducted by the Marion Downs National Center for Infant Hearing and the National Center for Hearing Assessment and Management. These assessments provided a baseline, of information. From that survey, DHEC found that only one of the 52 birthing hospitals in South Carolina had instituted a universal newborn hearing program. From results of that assessment, DHEC initiated the effort now known as First Sound. The pilot data from hospitals and audiologists have provided enough information for First Sound to make a change in protocols to assure more follow-up screenings. On January 7, 2000, First Sound has just received the final reports from an independent study by Pediatrix, a private firm, assessing the hospitals' efficacy level in newborn screenings. From these results, First Sound plans to develop recommendations to improve hospitals' efficacy level in newborn screenings.
2.2.7 Collaboration and Coordination
The First Sound Advisory Council through an active committee structure provide on-going collaborative and coordination between programs, agencies, providers and families. See Appendix F for the First Sound Advisory Council membership Listing. South Carolina is divided into 46 counties, each with at least one health department, although many have satellite offices for easier access for families in rural areas. EPSDT, WIC, CRS, Immunizations and special clinic services are available at health departments and through partnerships with pediatricians across the state. Thirteen Health Districts composed of 2 6 counties provide regional support to the health departments.
BabyNet, South Carolina's system of Early Intervention, is described as interagency, community-based, inter-disciplinary, cultural competent, family-centered Services are provided in natural environments including the child's home. The thirteen health district office's serve as the single points of entry for both BabyNet and CSHCN. BabyNet"s referrals include but are not limited to the South Carolina School for the Deaf and Blind, Children's Rehabilitative Services (CSHCN), Family Support Services (FSS), and Family Connection, Inc. (parent support organization). 1n addition, BabyNet utilizes SCDHEC Home Health therapists, as well as, private providers in all areas of the state.
The South Carolina School for the Deaf and Blind is located in Spartanburg with its community services office centrally located in Columbia. Staff serve children in their home or other natural environment. Family Connection, Inc. is a statewide parent support organization located in Columbia with hub offices in Greenville and Florence and support parents in every county. BabyNet (Part C) and CRS (CSHCN) provide significant funding to this organization. Audiologists are available in all areas of the state.
Training support and technical assistance for First Sound will continue to be from SCDHEC and through the Early Intervention Technical Assistance Collaborative (EITAC) with the University Affiliated Program at the University of South Carolina. Other national resources which have already been tapped include the Marion Downs National Center for Infant Hearing Assessment and Management. First Sound staff have sought advice and information from other state hearing screening programs regarding legislation issues, costs for hospitals, and protocols.
2.2.8 Goals and Objectives
The major goals of First Sound are to:
The major objectives of First Sound are spelled out in Attachment G. The First Sound Advisory Council believes that these goals and objectives, once completed, will result in universal screening, detection, and intervention as needed, for all of South Carolina's infants.
2.2.9 Required Resources
The following resources are needed to achieve universal newborn hearing screening, detection, and intervention in South Carolina: (1) funds for salary for one full time coordinator, (2) funds for salary for one full time data manager, (3) funds for salary for one part time audiologist consultant, (4) a statewide data collection system, (5) equipment and travel, fringe benefits. BabyNet (Part C) currently incurs most of these expenses. An alternative source of funding for First Sound would allow that Part C money to be redirected at the other costs outlined here. (6) funds for public awareness activities; (7) translation of materials to Spanish; (8) funds for hospital expenses; (9) funds for increased service delivery costs; and (10) funds for training of personnel.
Funds from this grant will support the full time coordinator who coordinates the activities of the First Sound Advisory Council and its committees; coordinates and monitors statewide assessments, coordinates and assist hospitals, audiologists, early interventionists, other providers with program implementation; reviews monthly data report and quality assurance report; distributes reports and pertinent information to participating hospitals, providers, and other interested parties.
Funds from this grant will support the full time data manager who collects data from hospitals; compiles monthly data reports; compiles monthly quality assurance reports; presents data reports at First Sound Advisory Council meetings and additional groups as needed; works to adapt pilot data collection system into statewide data collection system.
Funds from this grant will support the part time audiologist consultant who contributes to statewide assessments; provides technical assistance during statewide program implementation; reviews monthly data reports and quality assurance reports; and provides updates to audiological community.
Funds from this grant will support an electronic method for collecting data Funding will go to create or purchase software.
State funds have been sought for the increased hospital costs. BabyNet or other sources will fund the public awareness activities. BabyNet or other sources of funding will support the translation of materials into Spanish, interpreter/translation services, and training costs.
[PROJECT ACTIVITIES TIME ALLOCATION TABLE]
2.2.11 Plan for Evaluation
Program evaluation will be conducted on a monthly basis. (See Appendix C for Evaluation Tracking Data and Findings). The tool is based on American Academy of Pediatrics (AAP) expectations for successful programs. The tool proved successful during the pilot as it compared on eight measures or points of screening, detection, and intervention with requirements of the AAP. First Sound will provide this report to hospitals, audiologist, other providers, and Council members on a monthly basis.
Data collection is key to completing the Quality Assurance tool. In addition to the data collected on the Newborn Hearing Screening Form (See Appendix E) and the Audiologist Assessment Form (See Appendix H), information on time of intervention, type of intervention, and results of intervention will be gathered from BabyNet's tracking system, called BabyTrac.