PROJECT ABSTRACT: GEORGIA

Project Title: Georgia Infant Hearing Screening and Intervention System (GIHSIS)
Project Number: CFDA93.110ZZ
Project Director: Malissa Abdulla, M.S.S.W. Phone: (404) 651-7370
Organization Name: Georgia Division of Public Health, Family Health Branch
Address: 2 Peachtree Street, Atlanta, GA 30303
Contact Person; Malissa Abdulla, M.S.S.W. Phone: (404)651-7370 Fax: (404)463-6729
E-mail/World Wide Web Address: mcabdulla@dhr.state.ga.us
Project Period: 4 Years From: 4/1/00 To: 3/31/04
Current Budget Period: From: 4/1/00 To: 3/31/01

A. Organizational Setting: The Georgia Infant Hearing Screening and Intervention System (GIHSIS) is part of the Infant and Child Health Section (ICH), Family Health Branch (FHB), of the Georgia Division of Public Health. Within the FHB, GIHSIS will be guided, by a management team with senior representatives of the ICH and Children with Special Needs Sections and the Data Team. Overall input for GIHSIS directions and goal attainment is provided by the State Advisory Committee for Newborn Hearing Screening (SACNHS) , a joint committee of the State Interagency Coordinating Council for Part C of IDEA/Georgia Maternal and Infant Council, formed pursuant to the enactment of House Bill (H.B.) 717 in July 1999.

B. Purpose: With this giant and state support, the GIHSIS will develop and implement a comprehensive screening, referral, evaluation and diagnosis, and intervention program to reach all Georgia infants with a severe bearing loss Program components include: 1) screening in all hospitals with >100 births/year and community-based post-hospital screening for all referred infants and those not screened in hospitals; 2) pediatric care provider referral to a community-based network of evaluation and intervention services; 3) linkage to intervention and family support services through Babies Can't Wait (BCW) - Part C of IDEA and Children's Medical Services - Tide V CSHCN; 4) assurance of service and support linkages through the Children 1st tracking and follow-up system; 5) professional education, training, technical assistance, and consultation; 6) public awareness regarding hearing loss in children and the importance of early detection and intervention; and 7) surveillance and quality assurance supported by institution, community, and state level data collection.

C. Problem: With the growing understanding of language encoding beginning at the age of six months, and the criticality of early identification of and intervention for infants with severe hearing loss to mitigate life-long educational and social deficits, the threshold age for identifying these babies has dropped to birth. In the Atlanta, Georgia metropolitan area, and by extrapolation state-wide, based on the CDC "gold standard" Metropolitan Atlanta Developmental Disability Surveillance Project, only 8% of children with a bearing impairment (HI) (>40 dBs., better ear) were diagnosed by their first birthday, with 47% not diagnosed until over age three; and 17% of children were not identified until after five years of age. Currently, only 30% of Georgia's 120,000 babies born each year are being screened. Georgia has begun to address this issue with the passage of H.B. 717 which set forth a 95% universal newborn hearing (UNHS) screening goal, established the SACNHS, and allocated funds to begin the infrastructure development. Presently, Georgia lacks uniform protocols; a systematized referral, follow-up, and linkage structure; public education and health professional training and technical assistance mechanisms; and data collection at other than the screening hospital level Also, Georgia faces generic Financing issues such as the cost of screening equipment and public or private third party insurance reimbursement coverage for screening, evaluation, and interventions. The Governor's budget package for next year includes funds to address these later concerns.

D. Goals and Objectives: The GIHSIS impact goal is to enable children with severe hearing impairment to acquire communication skills within a defined typical range at age seven by early identification through newborn screening (by age one-month), clinical assessment (by age three-months), intervention (by age six-months), and on-going therapy and support services (as appropriate and requested by family). Outcome objectives focus on the establishment of a state GIHSIS infrastructure; development of a local hospital/public health UNHS framework; implementation of screening, referral, clinical evaluation, intervention, and support linkages; and policy directions that further GIHSIS objectives. Activity specific objectives for infrastructure address stakeholder/partnership structure, protocols, public/professional education, training/technical assistance, resource inventory assessment, quality assurance/accountability, and data systems. Objectives for local infrastructure relate to equipment availability, hospital/health department site protocols, and community linkage plans. Screening, referral, clinical evaluation, intervention, and support objectives for the actual screening and follow-up process express both chronological standards related to time post-partum and activity standards related to degree of accomplishment for in-hospital screening, post-hospital referral/missed screening, evaluation/diagnosis, and intervention/support provision. Policy direction objectives are concerned with system evaluation, legislation/regulations, and financing.

E. Methodology: At the state level, GIHSIS has three operational components: statewide activities and management, field implementation, and data/evaluation. The SACNHS provides a key point of accountability for UNHS activities through its legislative mandate. Available state funds provide the foundation for GIHSIS implementation. These include protocols for screening, follow-up, and intervention; establishment of training guidelines; initial statewide training and technical assistance by contracted consultants; creation of a state data system; development of basic public and health provider awareness campaigns; and a web page with information and linkages. Screening is targeted for all infants born in the 95 hospitals with >100 births a year. At the local level, the public health Children 1st referral, linkage and tracking system is the backbone for linkage activities while the Babies Can't Wait (Part C, IDEA) and Children's Medical Services (CSHCN, Title V) provide resources for post-diagnostic intervention. Children 1st provides a single point of entry for needed services in every Georgia health district. Linkage will be accomplished by the generation of weekly, standard reports for each district identifying newborns referred from in-hospital screening to post-discharge screening and those not screened in a hospital. District staff assume responsibility for contacting these families, offering an assessment visit and/or needed services, and following-up to assure receipt of services. At the point that a determination is made that any linkage, including medical home, family support, or intervention is needed for an infant being tracked by GIHSIS, Children 1st staff

will initiate the requested linkage and enter information regarding that action into the tracking database. Once a determination is made through screening that a further audiological evaluation is suggested, audiological referral information will be provided to families and linkage assistance will be offered. Audiologists will provide clinical evaluations to determine if a HI exists and establish a comprehensive diagnosis for those infants with a bearing impairment. Following such a diagnosis, the audiologist will review options with the family and primary care provider, and, as requested by the family, start the process to provide amplification for the infant, as well as work with public health staff to determine eligibility for BCW, CMS, or other relevant services.

F. Evaluation: The core evaluation question for GIHSIS is, docs the system effectively identify children with severe bearing impairment and assure access to needed services for the purpose of improving their communication skills? Other more specific evaluation questions relate directly to each of the goals and their associated objectives. Special attention is given to the issues of timeliness, completeness, effectiveness, and efficiency of the system. The impact evaluation question is, do infants who were identified and served through the GIHSIS system evidence typical communication skills at age seven? (This later question will addressed with CDC funding, if awarded.) System measurement uses qualitative and quantitative data obtained in the following manner: 1 ) monthly reports from the project coordinator designed to include data related to the overall functioning of the project, specifically stakeholder participation, public and professional education, protocol development, and training and technical assistance efforts; 2) initial inventory of GIHSIS components as the baseline for measuring system change resource efforts; 3) monthly reports using GIHSIS information system to document the geographical spread, completeness of testing, prevalence of failed screenings, and appropriate referrals; and 4) monitoring the progress of children identified with hearing impairment through district Children 1st quarterly reporting to ensure on-going appropriate referrals are being made as well as identify potential service gaps in specific areas.

Text of Annotation: Georgia Infant Hearing Screening and Intervention System (GIHSIS) establishes a statewide universal newborn hearing screening program for Georgia's 120,000 newborns that includes in-hospital screening in all hospitals with r100 births a year, post-discharge community screening for those referred/missed at hospital screening; clinical evaluation; intervention; and service and support linkage based on a local tracking and follow-up system. Infrastructure components of GIHSIS include professional education, training, technical assistance, and consultation; public awareness regarding congenital and acquired HI in children and the importance of early detection and intervention; and surveillance and quality assurance through institution, community, and state level data collection. The goal of GIHSIS to provide early intervention and support to infants with severe hearing impairment so they can achieve typical communication skills that optimize their educational and social development.

Project Annotation Key Words: Audiology, Case Management. Children with Special Health Needs, Communication Disorders, community Integrated Service System, Deafness, Developmental Disabilities, Early Intervention, Hearing Loss, Hearing Screening, Newborn Screening, Parent Education, Professional Education

PROJECT NARRATIVE

I. PURPOSE OF PROJECT

1.1 Problem Description

With the growing understanding of language encoding beginning at the age of six months, and the criticality of early identification of and intervention for infants with severe hearing impairment (HI) to mitigate life-long educational and social deficits, the threshold age for identifying these babies has dropped to birth. School entry or primary grade hearing screening, followed by fitting of hearing aids and speech therapy, cannot compensate for the "sounds of silence" during infancy and pre-school years. Yet, in the Atlanta, Georgia metropolitan area, based on the Centers for Disease Control and Prevention (CDC) "gold standard" Metropolitan Atlanta Developmental Disability Surveillance Project (MADDSP), only 8% of children with a HI (>40 dBs., better ear) were diagnosed by their first birthday, with 47% not diagnosed until over age three; and 17% of children were not identified until after five years of age. As one of the few population-based, developmental disability surveillance systems, MADDSP findings are commonly extrapolated to other populations; thus, a similar pattern in the rest of Georgia can be presumed. Given the availability of newborn hearing screening technology, and strong consensus recommendations from national groups, the foundation for early identification of and intervention for HI exists.

No uniform collection system for HI data exists in Georgia. Information from several administrative data sources describes the extent of current universal newborn hearing screening (UNHS) activity in Georgia and the incidence of hearing loss among Georgia children. The latest data (1998) indicates that 26 of the 95 birthing hospitals delivering > 100 babies are conducting UNHS; these infants represent 30% of Georgia births. Screening of high-risk babies based on doctor's orders is occurring at 14 other hospitals. No referral or follow-up information is available. Currently, 325 pre-school-age children with HI are known to Georgia Pines, a statewide parent-infant network for educational services. Through Part B of IDEA, the public school system is serving 1,295 children with HI and 15 children who are deaf- blind, ages 6-21, and 190 children with HI and 3 who are deaf-blind, ages 3-5. The racial/ethnic make-up of those ages 6-21 is: 55% white, 38% African American, 4% Hispanic, and 2% Asian. In the 1996-97 school year, 1 12,392 primary-grade children had hearing screening through a Georgia Division of Public Health (GDPH)-sponsored program; 2,215 students were identified with hearing problems. Children's Medical Services (CMS), the Title V CSHCN program, had 3,298 children (5/99) enrolled with a hearing problem; their diagnoses are reflective of a broad range of hearing-related medical conditions and degrees of hearing loss.

1.2 Proposed Intervention/Demonstration

With this grant and state support, the GIHSIS (Georgia Infant Hearing Screening and Intervention System) will develop and implement a comprehensive screening, referral, evaluation and diagnosis, and intervention program for all infants in Georgia. Components of this program will include: 1) screening in all hospitals with > 100 births/year and community-based post-discharge screening of all referred infants and those not screened in hospitals; 2) pediatric care provider referral to a community-based network of evaluation and intervention services; 3) linkage to intervention and family support services through Babies Can't Wait (BCW) - Part C of IDEA and CMS; 4) assurance of service and support linkages through the Children 1st tracking and follow-up system; 5) professional education, training, technical assistance, and consultation; 6) public awareness regarding congenital and acquired HI in children and the importance of early detection and intervention; and 7) surveillance and quality assurance supported by institution, community, and state level data collection.

1.3 Application Type

Based on the 1999 Georgia legislation establishing a 95% UNHS rate goal by 2001, and the recent $2.0 million budget UNHS request by Governor Barnes now being considered by the legislature, GDPH is submitting this proposal for full implementation (90%) of all program components.

1.4 Anticipated Benefits

The GIHSIS model specifically addresses identified CSHCN core outcomes. The benefits include:

• Screening - Through a combined hospital-based and public health agency system, all 120,000 babies born in Georgia will be offered newborn hearing screening and children at risk for progressive and acquired loss will be offered screening at appropriate intervals.
• Care - Established protocols centered on the pediatric medical home and responsive to family concerns will guide the audiological and medical follow-up of infants referred from the screening process and the evaluation and intervention for infants diagnosed with a HI.
• Payment for Services - Available public payment sources (Medicaid, Peachcare-Title XXI, BCW, and CMS) will be employed to pay for recommended services and expanded private insurance options will be encouraged.
• Families - Family involvement in decision-making, provision of services in the natural environment, and family satisfaction (all BCW principles) will be central to the organization and provision of services to infants with HI.

II. ORGANIZATIONAL EXPERIENCE AND CAPACITY

2.1 History of GDPH Involvement

GDPH has 50 years of experience providing hearing screening. Beginning in 1949, screening was conducted through the Crippled Children's Program and since then, several approaches have been used. Many children screened in the early period were affected by congenital rubella syndrome which was virtually eliminated by vaccine introduction in the mid-1970s. GDPH hired its first, and current, sensory disorders (hearing/vision) consultant, Adam Roche, M.Ed, in 1974. (See CV, Appendix A) With this staff capacity, more focused activity was generated. In 1974, GDPH purchased Crib-o-gram equipment for major birthing centers to screen high-risk infants; this was the first effort in newborn hearing screening. A law was passed in 1978 to establish screening for infants at risk for vision and hearing problems, however, funding to support the legislation was never provided and limited activity ensued. In the early 1980s, the Vital Records director and the sensory disorders consultant worked together to modify the birth certificate and create a high-risk infant registry in the Vital Records Office. On a monthly basis. Vital Records forwarded a list of high-risk infants to the local health districts for follow-up through a nursing appraisal based on Denver Developmental scoring; this effort ended in the early 1990s.

The 1994 National Institutes of Health UNHS joint consensus recommendation and subsequent recommendations from other groups spurred focused efforts related to implementation of UNHS in Georgia. In 1997, some funds were identified to purchase newborn hearing screening equipment for 14 hospitals located primarily in three rural, south Georgia health districts, where interest was expressed. In addition, Audx units were purchased in five other health districts and BCW early intervention nurses were trained in their use with high-risk infants and toddlers. In 1999, the legislature enacted House Bill (H.B.) 717 and appropriated $143,000 to carry out its key provisions. (See H.B. 717, Appendix B) This bill is the impetus for current efforts in Georgia. Since that time, a proposal was submitted to the Appalachian Regional Commission to purchase newborn hearing screening equipment for 19 north Georgia hospitals. Moreover, the Governor recommended allocation of $2.0 million in tobacco settlement funds to purchase equipment for the remaining Georgia hospitals with > 100 births per year, for local health departments to facilitate post-discharge screening, and support Medicaid/Peachcare reimbursement for newborn hearing screening. Medicaid/Peachcare covers nearly half of all births in Georgia. (The outcome of SFY 01 budget requests will be known by late March 2000.)

2.2 Current UNHS Activities

H.B. 717 created the State Advisory Committee on Newborn Hearing Screening (SACNHS) as a joint committee of the State Interagency Coordinating Council for Early Intervention (SICC, Part C of IDEA) and the Maternal and Infant Health Council (M and I Council) to provide recommendations for a framework to achieve the 95% screening objective and to collect and report UNHS data. The SACNHS is chaired by two pediatricians who are representatives of the SICC and M and I Council. Members include audiologists, pediatricians, a hospital administrator, a representative of the Georgia Hospital Association, adults with HI, parents of children with HI, legislators, and an obstetrics nurse. GDPH staffs the SACNHS and its subcommittees. (See membership, Appendix C.)

The SACNHS is helping to shape GDPH activities related to UNHS with the goal of having program components in place by July 1, 2000. The SACNHS work is being guided by its three subcommittees: 1 ) state system, 2) public awareness/education, and 3) data. The state system subcommittee is responsible for developing the plan to launch UNHS. They are creating screening, follow-up, and intervention protocols, as well as a training plan and guidelines for hospitals and providers. The public awareness/education subcommittee is establishing a plan to raise awareness of the value of early identification and intervention options for infants with HI utilizing a mass media campaign, presentations to targeted groups, a toll-free hotline, a web page, and distribution of promotional items, as well as overseeing training activities based on the plan. The data subcommittee is organizing a uniform state database which incorporates standardized techniques, methodology, reporting, and system evaluation that will be integrated into other existing GDPH systems. The SACNHS will prepare and disseminate an annual data/progress report.

The majority of H.B. 717 funding is being used to provide training and technical assistance. A contract is being developed with Robert Nozza, Ph.D, CCC-A, and Albert DeChicchis, Ph.D., CCC-A, audiologists who teach at the University of Georgia (UGA), for statewide training and technical assistance beginning in Summer 2000. (See CVs, Appendix A) The contract will include: 1) statewide training, conducted regionally, for hospital staff, pediatric care providers, health department staff, and other relevant individuals to provide an overview of newborn hearing screening and identify available technical assistance and public health community resources; 2) a two-day seminar for audiologists on clinical protocols for diagnosis of HI and fitting pediatric patients with amplification; and 3) provision of on-call technical assistance to hospitals, physicians, audiologists, and health departments.

2.3 Related GDPH Programs

GIHSIS activities fit into a broader maternal and child health framework where key components are in place that undergird our capacity to implement UNHS. The programmatic components include Children 1st, a locally-based linkage and referral assurance process; BCW; CMS; tertiary (3°) perinatal hospital follow-up; and Health Check/EPSDT. Also, post-discharge screening for infants failing the in-hospital screen and those not screened in the hospital will be coordinated by local health departments. Children 1st, based in the local health departments, identifies babies with socio-medical-environmental risk factors, based on birth certificate screening and external referral, and offers families linkage to medical homes and referral for services with follow-up up to age four to assure developmental milestone attainment and well-being. Children 1st will be employed to ensure linkage to evaluation for infants referred from hospital-based newborn hearing screening and linkage to services for those infants with a HI diagnosis. Through BCW, early intervention services are provided to families whose infants are diagnosed with severe HI, regardless of income. Services are based on individual needs of the family and child and may include speech therapy, case management, parent support, and assistive technology. CMS provides specialty medical services including treatment, surgery, drugs, prosthetic devices, and case management for income-eligible children with chronic medical conditions. The High Risk Infant Follow-up program provides home visiting by nurses to infants with medical risks. Six designated, state-funded 3° perinatal hospitals conduct follow-up clinics for high-risk infants to monitor development and make referrals, as well as offer technical assistance to other hospitals in their region regarding provision of services to high-risk pregnant women and infants. Health Check/EPSDT offers a mechanism for identifying children with HI after birth and providing them with follow-up and referral. The state public health office. Family Health Branch (FHB), oversees the planning, coordination, implementation, and evaluation of all these programs.

III. ADMINISTRATION AND ORGANIZATION

3.1 Georgia Division of Public Health

The GDPH, part of the Department of Human Resources, is the state public health agency. With a central office in Atlanta, GDPH has several units, including the FHB which has primary responsibility for UNHS, and the Health Assessment Section which has data warehousing and planning functions. The FHB is the state Title V recipient and includes the CMS and BCW programs. (See transmittal letter. Title V and CSHCN directors.) Georgia is divided into 19 public health districts encompassing 159 counties. Each district has 1 to 16 counties based on population size and provides county health departments with programmatic and administrative support. (See tables of organization and district map, Appendix D.)

GDPH and the county health departments have responsibility for the usual spectrum of program areas. Each District Health Director reports both to DPH and the individual county board(s) of health included within the district boundaries. Child health services are structured somewhat differently from district to district. In some. Children 1st, child health, and CSHCN (including BCW and CMS) are integrated, while in others they remain discrete programs. The county board of health has budgetary, regulatory, enforcement, and service provision authority. Each county operates one or more public health clinics. Recently, a statewide network of eight perinatal planning coordinators was created to work regionally with hospitals, providers, and local public health staff to improve planning and services. These coordinators, as well as district and county public health staff, will have major roles in GIHSIS roll-out.

3.2 GIHSIS Management

GIHSIS will be under the direction of a Program Coordinator in the FHB Infant and Child Health (ICH) Office who will work closely work closely with the FHB Children with Special Needs (CSN) Office. The Coordinator will be supervised by the ICH Team Leader, Malissa Abdulla, M.S.S.W. Ms. Abdulla will work closely with Wendy Sanders, M.Ed., Team Leader for CSN, both of whom report to the FHB Director for Program and Services, Eve Bogan. (See CVs, Appendix A and GIHSIS table of organization, Appendix D) A management team, consisting of relevant FHB and Health Assessment staff, will guide the GIHSIS operations. GIHSIS team members will staff the SACNHS.

At the state level, GIHSIS will have three operational components: management and statewide activities, field implementation, and data/evaluation. The GIHSIS project coordinator will be directly responsible for the first component and will work closely with other FHB units charged with the remaining two responsibilities. Field implementation will be supported by the cadre of infant and child health consultants reporting to Ms. Abdulla. These consultants provide technical assistance and consultation to district and county health offices and providers in the implementation of public health programs. Mr. Roche will serve as the audiological specialist for this team. Data/evaluation activities will be carried out by the FHB Data Team, with Ariane Krause, M.P.H., the ICH/CSN data coordinator managing day-to-day activities. Assistance will be provided by Rebekah Hudgins. M.P.H., the ICH/CSN evaluation consultant. Elana Morris, M.P.H., manages all FHB data activities.

The SACNHS provides a key point of accountability for UNHS activities as it is charged with producing an annual report for the Governor and legislature beginning in December 2000. This report will summarize progress towards the screening goal and make recommendations regarding necessary actions to improve UNHS implementation. (See legislation. Appendix B) The SACNHS also engages several agencies and organizations essential to UNHS, such as the Georgia Hospital Association and Georgia Chapter of the American Academy of Pediatrics.

As described above, other important relationships are established through the structure of the GDPH and the FHB. These functional relationships include the 19 district health offices that will be responsible for ensuring hospital implementation and community planning; the 159 county health departments that operate clinical programs and service coordination activities, including BCW, CMS, and Children 1st; and the six regional 3° perinatal centers that have high-risk nurseries and follow-up clinics and offer specialty consultation to community hospitals in their region.

IV. AVAILABLE RESOURCES

Since July 1999, GDPH resources available for UNHS have significantly expanded. Prior to July, resources were limited to: 1) the State Sensory Disorders Consultant, Mr. Roche, who focused on newborn screening, school-based vision and hearing screening, and CSN program consultation; 2) general tracking and referral of infants at risk for or diagnosed with HI through Children 1st; 3) service coordination and .intervention for infants diagnosed with HI meeting specified criteria through BCW and CMS; and 4) screening equipment in 40 hospitals and 5 health districts, about 1/3 of which was purchased by GDPH. After the passage of H.B. 717, this situation was altered in three ways: 1) the FHB assigned several staff to support the work of the SACNHS on system development, public and professional education, and data; 2) a training and consultation contract was developed to provide technical assistance to hospitals, health providers, and audiologists, and 3) funds were set aside for signers/interpreters, initial computer programming, and meeting and print costs. (Current funding levels are likely to continue, but legislative action will be unknown until March 2000. If so, the following activities will be supported with state funds beyond July 2000.)

Major elements to support UNHS expansion will be in place if HRSA funds become available in Spring 2000. These SACNHS-generated efforts include: 1) an implementation plan for GIHSIS which is outlined in this application; 2) protocols for screening, follow-up, and intervention; 3) establishment of training guidelines; 4) establishment of a state database; 5) development of basic public and health provider awareness campaigns; and 5) a web page with key information and linkages. The training and consultation contract will buttress this framework with: 1) a two-day seminar for audiologists on up-to-date clinical protocols for diagnosis of HI and fitting pediatric patients with amplification to be conducted in the Summer 2000; 2) statewide orientation, from the Summer 2000 to Spring 2001, in each of the 19 health districts to give hospital and public health staff, pediatric providers, and other key community partners information on newborn hearing screening technology, language acquisition, and roles and responsibilities in implementing newborn hearing screening; and 3) on-call consultation by phone and on-site, as required, to hospitals, pediatric providers, audiologists, and health departments.

Since assuming office in January 1999, Governor Roy E. Barnes and his wife, Marie, have made a professional and personal commitment to UNHS, with Mrs. Barnes making the concern one of her focuses. (See support letter, Appendix E.) The Governor has recommended to the legislature that tobacco settlement funds be allocated for the purchase of newborn hearing screening equipment for hospitals and health departments and for the expansion of Medicaid reimbursement for screening and follow-up services. In addition, he has requested that Appalachian Regional Commission funds be awarded for screening equipment purchase. As stated previously, final action on budget requests will not be known until late March 2000. In another effort, the Governor has written every birthing hospital to endorse hearing screening and enclosed "Silence isn't always Golden" brochures from the NIDCD Information Clearinghouse for distribution.

V. IDENTIFICATION OF TARGET POPULATION AND SERVICE AVAILABILITY

5.1 Overview of Births/Hospitals

In 2000, about 120,000 babies will be born in Georgia, a number which is going up by about 2,500 births a year. In 1998, 33.6% of babies born were white, 63.9% were black, and 2.5% were other. Babies are born at 126 facilities, ranging from Northside Hospital in north Fulton County where over 14,000 babies are born annually, to many small community hospitals in rural areas where fewer than 100 births occur and some non-birthing hospitals with ten or fewer unanticipated deliveries. Presently, 26 hospitals indicate they are conducting universal screening and another 14 are doing high-risk screening or screening on doctor's orders. Last year, about 33,000 infants were screened through universal screening and another 2,500 were screened based on risk or doctor's orders, resulting in screening approximately 30% of all Georgia births. (See hospital summary. Appendix F.)

High-risk births are of particular concern in Georgia as the state ranks 46th highest nationally in low birthweight (LEW) babies; LBW is a risk factor for HI. In 1997, 10,393 LBW babies were born of which 20.5% were very LBW (under 1500 grams). The racial disparity of these births is of note with the prevalence of LBW black babies (13.0/100 live births) almost double that for white babies (6.6/100 live births). The rate of LBW babies increased 1.4 % between 1990 and 1997.

5.2 Existing Services/Community Support

The service and support network required for an infant who is referred from newborn hearing screening has several elements. As described below, critical service components are available throughout Georgia, however, they are unlinked, inconsistent, and dependent on family initiative. These issues are addressed more specifically in Section 5.3, Specific Concerns.

Key points in the network for referred infants are audiologists to perform evaluations, make diagnoses, and if required, fit hearing aids; local public health departments to offer follow-up and referral through Children 1st and service coordination, intervention, and treatment services for eligible infants through BCW and CMS, private agencies, and speech-language and other therapists to assist infants with HI and their families by providing rehabilitation and support services; and family support organizations and groups to help families deal with the practical and emotional issues attendant to an infant with HI.

While audiologists are widely available, sub-specialty medical care from pediatric otolaryngogists (ENTs) is limited to major metropolitan areas, and some areas have shortages of speech-language therapists. Georgia has approximately 300 certified audiologists dispersed throughout the state practicing in hospitals, medical practices, private provider groups, schools, and independently with many audiologists offering part-time satellite services in more rural areas. However, only about half currently have the specialized equipment such as visual reinforced audiometry needed to evaluate infants and a current inventory of these audiologists has not been compiled. Pediatric ENTs practice in Atlanta, Savannah, Macon, Columbus, and Augusta resulting in many rural families who must travel 100+ miles each way. The potential exists through telemedicine to offer specialized medical consultation and care to those living in rural areas. Georgia has one of the nation's most advanced networks connecting academic medical centers to community and rural hospitals, however, its actual use for infants with HI is unknown. Although speech-language therapy is available throughout the state, shortage areas have been identified in northeast, southcentral, and southwestern Georgia, particularly for therapists with pediatric skills and experience. The Georgia Speech-Language and Hearing Association serves health professionals in all of these disciplines; it conducts conferences, publishes a newsletter, and undertakes advocacy.

Several agencies and programs provide services to infants and children with HI. Within public health, as mentioned previously, both BCW and CMS address the needs of these children. BCW does not have income eligibility, but is limited to children up to age three with severe bilateral hearing loss and, depending on the Individual Family Service Plan (IFSP), may provide speech-language and other therapy, hearing aids, and family support services. CMS provides medical treatment including surgery, drugs, and assistive devices to income-eligible infants and children up to age 21 with diagnosed HI and otological conditions. In some cases, a combination of BCW and CMS services are used to address the needs of a child. Georgia Medicaid/Peachcare currently covers only the evaluation for eligible children who are diagnosed with HI and analog hearing aids. Screening, rule-out diagnosis, or other hearing aids are not covered. In addition, several specialized agencies serve the needs of infants and children with HI. Georgia PINES (Parents Infant Network for Educational Service), a statewide program of the Georgia Department of Education, provides assistance to children, birth to age five, in obtaining a full range of assessment services through state schools and private local providers; direct, family-centered services based on the SKI-HI model, including provision of pyscho-emotional support, a home hearing aid program, and communication and auditory programs; and support services to parents. Georgia PINES currently serves 125 young children. Georgia operates three schools for the deaf-two residential schools, the Georgia School for the Deaf in Cave Springs and the Georgia School for the Deaf-Blind in Macon and one day school, the Atlanta Area School for the Deaf. In addition, services for children with HI are available through Part B of IDEA programs in public schools throughout the state and a few Atlanta area privately operated schools.

The national, HI focused, voluntary organizations do not have Georgia chapters. Some of these groups existed in the past, but, at this time, they are not active. The only statewide support services for families of children with HI is Georgia PINES. However, Parent-to-Parent and Family Voices, two national groups for parents of children with disabilities, offer family support and advocacy services in Georgia. BCW supports Parent-to-Parent to maintain a central directory linking parents to resources; the FHB, with state funds, contracts with Parent-to-Parent for parent support groups and broader information services. Also, BCW employs parent educators to assist families with support services. Georgia has several other resources for training and professional expertise related to HI. The UGA has a masters/doctoral level program in audiology and several academic institutions, including UGA, Georgia State, Columbus State, Valdosta State, and Armstrong have speech therapy programs. Of special note is the CDC in Atlanta which has taken an active role in Georgia UNHS efforts. They convened a task force that took an active role in the passage of H.B. 717 and are now offering technical assistance for current activities.

5.3 Specific Concerns

In assessing current activity and system capacity, concerns focused on several areas have been identified. These concerns include system development, both at the public health and hospital/community level; adequate expertise and skills to conduct UNHS, follow-up, evaluation, diagnosis, and intervention; operating within the six-month postnatal criticality period; reimbursement limitations; public and professional awareness and education; and mechanisms for post-discharge follow-up and evaluation. System development within the public health framework is a major focus for action over the next year. Much of this is being addressed by the SACNHS. The framework for a statewide, rather than a hospital-focused initiative must be constructed, including protocols, community service plans, follow-up, tracking, data collection, quality assurance, and outcome evaluation. For each of these elements, implementation plans will be necessary to operationalize them in over 100 hospitals, working in conjunction with 159 county health departments and as many as 300 audiologists, as well as education and community support agencies. An integral part of putting this system in place is establishing and maintaining a database inventory of key agencies, contacts, service availability, eligibility, etc. State and local public health will need to play a major role in engaging the birthing hospitals in UNHS, both to encourage their participation and assist them in its actual implementation. The hospitals will then require concerted efforts to adopt the protocols and procedures for their facility and to their community circumstances and give the necessary support to the process, particularly in the initial period. Added to this mix is the necessity of developing the system in a manner that is user-responsive so that families do not confront access barriers in seeking services and have advocacy mechanisms to address inevitable problems.

UNHS requires a multi-disciplinary team with not only specific expertise, skills, and equipment, but also functional relationships among the members of the team. The basic package for training and technical assistance will be provided through the contract with Drs. Nozza and DeChicchis. This support during the first year will need to be sustained as technology changes, protocols are modified, and personnel turnover. Moreover, the relationships among the multi-disciplinary team members at the local level and between the local "teams" and state staff will need nurturing. These are the relationships that assure that children get screened and receive appropriate intervention, and that information flows among all parts of the system. Presently, except in a handful of communities, plans are not in place. Since the state's role has been limited to date, only collegial, not formal relationships exist.

Underlying any discussion of capacity is the issue of cost reimbursement, complicated by the criticality of the six-month postnatal period when intervention should be initiated for infants with severe HI. If, as anticipated, state resources become available for the purchase of screening equipment, reimbursement by third party insurers for the actual screening, referral evaluation, diagnostic evaluation, hearing aids, and other interventions will still remain a limitation. Even if insurers eventually cover the full range of needs, the prior approval process, often accompanied by appeals, may prolong the time before an infant is fitted with hearing aids well beyond six months of age. At the state level, policy change may be more easily accomplished for those covered by state-purchased insurance, i.e. Medicaid/Peachcare and state employees. Broader inclusion of larger groups of covered persons would require either a major state policy or legislative effort, or similar national effort to address those falling under ERISA. Even with such efforts, costs for uninsured, underinsured, or those between the cracks of program eligibility will still not be addressed without a major infusion of state funds. Beyond addressing the tangible concerns identified above, issues related to both family and professional knowledge, attitudes, and practices related to possible infant hearing loss must be addressed.

Neither the public nor the health professional community is sufficiently aware of the frequency and implications of congenital hearing loss and potential interventions. This information must be integrated into a broader framework to overcome issues related to stigma, labeling, and grief experienced by many parents, as well as a traditional "wait-and-see" attitude in the health provider community related to perceived delays in language and communication skills development. These concerns suggest a dual approach of public and professional education to convey specific information, accompanied by social marketing to impact attitudes and actual practices in initiating referrals and obtaining services.

A last concern is developing post-discharge mechanisms to identify and screen infants not screened due to delivery in a facility not doing screening, early discharge, and out-of-hospital birth, as well as those referred from in-hospital screening. GIHSIS initial efforts will focus on post-discharge screening for referrals and missed births; efforts for those at risk for progressive or acquired HI will occur once the system has been established. Approaches to track and screen infants at risk for progressive HI and those at risk for acquired HI impairment due to illness or injury may be addressed through a variety of means, including community screening, health department screening, and/or linkage to registries such as disease surveillance or trauma.

VI. NEEDS ASSESSMENT

Background information for the needs assessment has been provided in earlier sections of this application. Several needs emerge from the analysis of this information.

1. Expansion of Screening: Based on current self-reported screening levels of approximately 30% of Georgia newborns, the overall screening level must triple to reach full implementation status. The most prominent difficulties cited in accomplishing this objective are the equipment cost, insurance reimbursement policies, instituting change in hospital procedures; and staff training. H.B. 717 has set forth the framework to address this.
2. Establishment of Uniform Protocols for Screening. Referral. Evaluation. Diagnosis, and Intervention: Presently, hospitals conducting screening activities are doing so based on self-established protocols. While some hospitals adhere to national recommendations, most do not and lack a comprehensive UNHS program and standardized procedures for screening, referral linkages, and follow-up. Although national models are available to Georgia hospitals, GDPH or others have yet to proactively recommended their adoption. The SACNHS is in the process of developing recommendations for standardized procedures/ protocols that will be incorporated into a template kit that hospitals, health departments, and providers can use to customize individual, community-specific protocols.
3. Development of a Data Collection System for Infant Tracking and Quality Assurance: With the exception of one health district in rural, southeast Georgia that provides aggregate data to as a result of GDPH funding for screening equipment purchase, screening data remains at the hospital level with no data generated on referral, evaluation, diagnosis, or outcome. Available hospital data is self-reported and subject to difficulties in reliability and validity. A major gap is the lack of a statewide data system that enables infant tracking/follow-up in the community and quality assurance and evaluation at the stale level. The SACNHS is designing such a system and will be conducting a small-scale pilot in Spring 2000.
4. Training and Technical Assistance for Mulli-Disciplinary Professionals: At this time, training/TA is available only from screening equipment manufacturers. Their support focuses on the use of equipment by hospital staff and audiologists, and does not address broader systems and service provision issues or the other health professionals involved in comprehensive UNHS. Two types of training/TA are needed: 1) expertise regarding HI, particularly in infants, and resources for early intervention, and 2) relevant skills based on roles and responsibilities, as set forth in protocols and community plans. The state-funded GDPH training contract will meet core, initial training/TA needs, but will not offer the focused and/or on-going assistance required to fully implement and sustain UNHS. Also, this contract does not include the development of print or web-based resource materials.
5. Development of Community-Level Service Plans: Except in the Waycross and Macon areas, screening has not been integrated into a community-specific plan for referral, follow-up, tracking, and intervention that: 1) identifies audiologists and ENTs; 2) designates staff with roles and responsibilities for tracking and family advocacy and support; 3) establishes intervention resources; and 4) details data collection and quality assurance activities. Such plans need to move from the unique relations of each in-hospital screening facility to the shared resources of the community; often their development can be facilitated by a community-wide approach through which consistent information and common elements regarding non-hospital activities can be incorporated.
6. Creation and Maintenance of a Resource Inventory Database: A centralized Georgia resource inventory (e.g., hospital screening status/contact information, audiologists acceptinginfant patients, community support programs, program eligibility/insurance reimbursement, etc.) does not currently exist. Information is inconsistent, incomplete, and anecdotal. Reliable and valid baseline data against which progress can be measured is not available and inquiries from professionals and the public cannot be readily answered.
7. Changes in Reimbursement Policies: Medicaid/Peachcare currently do not reimburse a supplemental amount for newborn hearing screening or cover rule-out audiological clinical evaluation. Under the Governor's proposal, if approved by the legislature, reimbursement would be provided. Anecdotal information regarding private insurance plans indicates that few plans provide this coverage. Efforts on both a state and national level are required to impact these policies which pose a significant barrier for successful UNHS implementation.
8. Paradigm Shift to Address Possible Infant HI as a Critical Health Situation; The criticality of the six-month postnatal period for identification of and intervention for infants with severe hearing loss is not widely recognized by health professionals and families. Education and social marketing is needed to make "possible HI" a red-alert, generating immediate and concerted actions by health providers and families. This effort needs to be rooted in broader awareness regarding the frequency and impact of congenital HI, screening, and available intervention. The SACNHS has already identified several strategies to address this concern.
9. Identification of Performance Measures/Evaluation: Since a statewide UNHS system does not exist, performance measurement and process or impact evaluation have not occurred. Establishing the framework for accountability is essential as GIHSIS efforts move to the next stage. Proposed evaluation activities are described in Section XI, Plan for Evaluation.

VII. COLLABORATION AND COORDINATION

GIHSIS building blocks form a UNHS infrastructure at the state and local level using established public health systems, including metabolic screening. Children 1st, and regional 3° perinatal centers; current public health programs, such as BCW and CMS; and existing, broad-based advisory groups including SACNHS, State and local Interagency Coordinating Councils, and the Maternal and Infant Council. Already incorporated within these systems, programs, and advisory bodies are most of the key relationships necessary to implement GIHSIS. Within the Family Health Branch, GIHSIS is being integrated into the current system that interlocks infant and child health, children with special needs, and maternal health using current structures rather than creating a stand-alone program. GIHSIS draws upon other GDPH offices, such as Vital Records, MCH Epidemiology, and Health Assessment, to support the underlying data-related system activity. This infrastructure is linked to local public health operating systems, including Children 1st and regional perinatal planning, to merge GIHSIS activities into on-going infant tracking and referral systems and service programs, such as county health department child health clinics, BCW, and CMS, that provide requisite service coordination and care.

At the state level, relationships, along with coordination and collaboration around the set of activities involved in GIHSIS, have already been forged and exist, both formally and informally, through contracts and participation on advisory groups. For example, FHB contracts with the Georgia Chapter of the American Academy of Pediatrics to encourage pediatricians to refer to Children 1st and with six major regional 3° perinatal centers for care and follow-up of high-risk infants; BCW contracts with Parent-to-Parent for family resource linkages; and CMS has an extensive network of specialty health providers. In addition, the key advisory groups for GIHSIS - SACNHS, State ICC, and M and I Council - include representatives of relevant state agencies (Medicaid, Education, Mental Retardation. Insurance, and Family Services); physician and nursing groups; the Georgia Hospital Association; practicing audiologists, obstetric nurses, neonatologists, and developmental pediatricians; hospital administrators; family representatives: key community providers, such as Georgia PINES; and legislators. (See Letters of Support, Appendix E.) A similar pattern is reflected on the local level through less formal, on-going, working relationships and formal contracts and joint committee participation. Of particular note are the CMS and BCW service agreements with local providers. Children 1st referral networks, and the local ICCs in each health district that bring together agencies, providers, and families. The relationships and agreements described above will be at the center of GIHSlS implementation.

With this framework already constructed, what is needed is the mortar to cement these building blocks into GIHSIS. This effort will be channeled through SACNHS activities. In furthering GIHSIS objectives, assistance will be sought from some additional groups that have not yet been specifically involved. Technical assistance is expected from the Marion Downs National Center for Infant Hearing, an MCHB grantee, in developing system components. The Georgia Speech-Language and Hearing Association programs and newsletter will be used to inform hearing/speech professionals about GIHSIS and encourage their support and involvement and as an in-service training vehicle for infant hearing screening approaches and GIHSlS-specific procedures.

VIII. GOALS AND OBJECTIVES

The GIHSIS goals mirror proposed Healthy People 2010 UNHS goals and MCHB milestones related to screening, follow-up, clinical assessment, and intervention. The GIHSIS impact goal is:

This impact goal is effectuated by outcome goals related to the establishment of a state GIHSIS infrastructure; development of a local hospital/health department UNHS framework; implementation of screening, referral, clinical evaluation, intervention, and support linkages; and policy directions that further GIHSIS objectives. These goals and related objectives are detailed below and activities to achieve highlighted aspects are described in Section X, Project Methodology.

8.1 State Infrastructure:

Goal (Stakeholder/Partnership Structure): Support the implementation of UNHS by engaging a stakeholder/partnership constituency that can advocate for system needs, identify approaches to address system components, and facilitate coordination and collaboration among public and private providers.

Objectives:

• Obtain external support for and input regarding GIHSIS through an active SACNHS that represents the range of knowledge, skills, expertise, relationships, and viewpoints required to implement an effective UNHS system throughout the grant period, April 2000 to March 2004, and beyond.
• Engage relevant public and private agencies, stakeholder groups, and segments of the community, through the SACNHS, to participate in identified GIHSIS strategies and activities beginning April 2000 and on-going.
• Maintain functional relationships between GDPH and relevant public and private agencies to address policy and operational concerns related to GIHSIS beginning April 2000 and on-going.

Goal (Protocols): Establish the service framework for GIHSIS through screening, referral, audiological evaluation, amplification/therapy, service coordination, and child/family support protocols for relevant providers, facilities, and agencies

Objectives:

• Establish protocols that include standards and procedures, along with identified roles and responsibilities, for screening, referral, audiological evaluation, amplification/therapy, service coordination, and child/family supports by October 2000 and update the protocols as needed throughout the grant period.
• Disseminate these protocols along with customizable templates to relevant providers, facilities, and agencies, in both print and electronic form, beginning October 2000 and on-going.

Goal (Public/Professional Education): Generate awareness among health professionals, particularly those whose practice involves the GIHSIS target population, and the public, especially parents, regarding the criticality of infant hearing loss identification, available habilitation. and early intervention.

Objectives:

• Provide the public with information regarding HI and UNHS based on a social marketing approach that focuses on attitude/behavior issues using multiple information channels, including a media campaign with uniform messages, targeted presentations, and the web beginning October 2000 and on-going.
• Provide health professionals whose practice involves the GIHSIS target population with up-to-date general information regarding HI and UNHS so that they can take appropriate actions within their practice setting and with families to advance GIHSIS beginning July 2000 and on-going.

Goal (Training/Technical Assistance): Assure that health professionals have requisite information and skills regarding UNHS, in general, as well as relevant and specific GIHSIS guidelines and operational procedures so that they can provide optimal services to infants and their families.

Objectives:

• Convey specific clinical information, practice protocols, and resource information to health professionals who are "partners" in GIHSIS implementation by conducting statewide and local seminars/workshops, making presentations and setting up exhibits beginning July 2000 and on-going.
• Assist local GIHSIS "partners" in customizing templates as well as resolve specific issues related to GIHSIS protocols and complex clinical, patient, or community situations by providing technical assistance and consultation to hospitals and providers beginning July 2000 and on-going.
• Provide accessible, up-to-date clinical and resource information to hospitals, providers, and agencies through printed and web-based information, protocols and manuals beginning July 2000 and on-going

Goal (Assessment/Inventory): Maintain current information regarding all GIHSIS components (hospitals, providers, and agencies) as a baseline against which to gauge progress and to facilitate contact and referral activity.

Objective:

• Establish baseline status and determine changes related to all GIHSIS participants, as well as facilitate communication with them, by compiling and maintaining a database with contact and status information through initial data collection completed by September 2000 and updates on at least a semi-annual basis thereafter.

Goal (Quality Assurance/Accountability): Maintain the effectiveness of GIHSIS by undertaking quality assurance activities related to specific components as well as the entire system and provide appropriate programmatic accountability to funders, officials, and the public.

Objectives:

• Establish standards for performance measurement that can be used for determination of quality by October 2000 and review the established standards at least annually and modify as warranted.
• Produce standard and special reports according to established schedules for program staff to identify problems and initiate action and for management staff and other officials for programmatic and policy decision-making and accountability beginning October 2000 and on-going.
• Provide required, timely progress reports to funders, officials, GIHSIS participants, and the public.

Goal (Data): Establish and implement an integrated, standardized information system to be used for infant tracking of screening and follow-up at the community level and quality assurance, reporting, evaluation, and policy development at the state level.

Objectives:

• Establish a statewide, electronic GIHSIS information system that includes standardized data elements, methods for data collection, documentation, data collection instruments, edit programs, and standard reports that support integrated newborn screening by October 2000.
• Implement complete, accurate and timely data collection, and obtain least 90% of required data by training hospital and health department staff, audiologists, and other professionals in data collection procedures using various modalities, including workshops, manuals, internet-based material, and individual technical assistance beginning September 2000 and on-going.
• Obtain hearing screening, referral, and intervention data for at least 90% of screened newborns by collecting batched screening data forms from hospital and health department screeners on a weekly basis with data entered within Five business days, and merged by unique ID with metabolic screening to produce a complete record by October 2002.
• Produce standard and special reports generated from the database that support local infant tracking and intervention and assist with quality assurance, as well as state-level quality assurance, reporting, evaluation, and policy formulation activities beginning October 2000 and on-going.

8.2 Local Infrastructure

Goal (Equipment): Assure that birthing hospitals and health districts have equipment required for

newborn screening according to GIHSIS protocols for in-hospital and post-discharge screens.

Objective:

• Provide OAE and/or AABR equipment (as recommended by NIH consensus guidelines) to 95% of hospitals with > 100 births annually and health districts according to annual birth incidence by June 2001, contingent on the enactment of the Governor's budget recommendations.

Goal (Hospital/Health Department Site Protocols): Implement screening activities in birthing hospitals and health departments using customized protocols and operational procedures based on GIHSIS recommended protocols.

Objective:

• Facilitate and/or assure the development or modification of comprehensive, provider-specific screening protocols for 90% of screening facilities prior to the initiation of screening or by January 2001 for those facilities already conducting screening.

Goal (Community' Linkage Plans): Have linkage plans specific for each community Chat include a customized algorithm, procedures, and resources providing determined linkage among all GIHSIS service components, including in-hospital screening, post-discharge screening, clinical evaluation. hearing aid fitting/intervention, service coordination, and infant/family supports.

Objective:

• Produce an agreed upon community plan for UNHS determined by relevant partners (hospital, health department, health providers, public/private agencies) that serve as an operational protocol in at least 80% of communities/facilities with screening activity by January 2002.

8.3 Screening, Referral, Evaluation, Intervention, and Support

Goal (In-Hospital Screening): Screen at least 90% of newborns for HI.

Objectives:

• Attain in-hospital screening of at least 60% of newborns by January 2002, 75% by January 2003, and 90% by March 2004 to identify infants with severe bilateral hearing loss.
• Determine tracking criteria and approaches for inclusion of infants and toddlers up to age four with defined risks for acquired or progressive HI by January 2003.

Goal (Referral Post-Hospital Screen): Refer all infants who fail the in-hospital screen for post-discharge screening.

Objectives:

• Provide families of 100% of infants who fail the in-hospital screen with referral and education information and, as requested, assist them in arranging for the follow-up screen beginning January 2001 and on-going.
• Provide in-hospital screening results to health district Children 1st coordinators for 90% of all infants who fail the in-hospital screen starting January 2001 so that they can initiate follow-up and assurance activities.
• Assure that at least 80% of infants requiring a post-discharge screen receive this screen by age one month and that all infants failing the post-discharge screen are referred for complete clinical audiological evaluations, with assistance provided as requested, beginning January 2001.

Goal (Evaluation/Diagnosis): Evaluate infants failing screening to confirm HI and obtain diagnostic information required to prescribe intervention.

Objectives:

• Assure that clinical audiological evaluations occur for at least 80% of infants failing screening by age four months and offer linkages to appropriate intervention and services for infants with diagnosed severe hearing loss beginning January 2001 and on-going.
• Obtain assessment and diagnostic tracking information through Children 1st for at least 90% of infants who receive clinical audiological evaluations beginning January 2001 and on-going.

Goal (Intervention/Supports): Provide habilitation intervention and infant/family supports in accordance with family decisions.

Objectives:

• Assure that hearing amplification is initiated for at least 80% of infants diagnosed with severe HI by age six months beginning January 2001 and on-going.
• Offer CMS Title V participation to provide medical services to all eligible infants beginning January 2001 and on-going.

• Offer BCW participation to all infants with eligible hearing loss and initiate an evaluation of all Five developmental domains to identify strengths and needs and determine necessary services through a complete diagnostic evaluation of all infants whose families accept participation on a continuing basis throughout the grant period.
• Provide services and supports based on the evaluation determinations and family decisions to all BCW evaluated children on a continuing basis throughout the grant period.

8.4 Policy Directions

Goal (Evaluation): Ascertain the impact of, outcomes for. and progress made in the implementation of GIHSIS.

Objectives:

• Shape program decisions and policy directions with data obtained through evaluation activities based on the established design from the start of the grant period, April 2000, until March 2004 (with enhanced evaluation if additional support from CDC is obtained).
• Track milestone achievements and inform stakeholders of progress at least semi-annually beginning December 2000.

Goal (Legislation/Regulations): Enact legislation and/or regulatory changes required to further GIHSIS goals and objectives.

Objectives:

• Introduce legislation, as needed, to further GIHSIS and educate lawmakers, officials, and the public regarding the proposed legislation beginning January 2001.
• Promulgate changes, if determined, of Department of Human Resources rules and regulations as described in H.B 717 that further GIHSIS beginning September 2001.

Goal (Financial Self-Sufficiency): Assure GIHSIS infrastructure and infant and family services have on- going funding.

Objectives:

• Maximize provider participation in GIHSIS and overcome family financial barriers by expanding third party insurance coverage for the full range of GIHSIS services through national and state-level efforts to broaden coverage legislatively, through employer/insurer option, and/or individual patient advocacy for needed treatment beginning October 2000.
• Assure support for GIHSIS infrastructure components by obtaining on-going state funding beginning State Fiscal Year 02, July 2001.

IX. REQUIRED RESOURCES

As described in Sections II 2.3-Related GDPH Programs, IV-Available Resources, and VII-Collaboration/Coordination, resources are available for many of the major GIHSIS components, assuming the Governor's $2.0 million budget recommendation is approved However, support for certain essential infrastructure components will still be missing. Specifically, full-time, program level leadership is required to manage all aspects of GIHSlS and provide visible leadership within the stakeholder community to generate action; assistance is needed to support the volume of data and material collected and generated by the state project office; and consultation is sought to acquire skills and expertise for data programming, material development, and social marketing effort. All grant funds will be used for the purposes specified in the application; DHR Financial management systems will provide the necessary fiscal control and accounting procedures.

X. PROJECT METHODOLOGY

Overall project methodology has been outlined throughout this document, particularly in Sections III-Administration and Organization and XII-Goals and Objectives. This section highlights certain key approaches and provides the required Project Activities Time Allocation and Personnel Allocation charts. These charts specifically reflect the objectives supported by requested MCHB resources. As explained in Section IX-Required Resources, these resources represent a small but crucial part of the overall GIHSIS.

10.1 Advisory Committee

The SACNHS was established July 1, 1999 and had its first meeting on September 7, 1999. The SACNHS, described in Section II 2.2, is legislatively charged with providing recommendations on appropriate screening methodology, hospital criteria, reporting guidelines, and means to assure referral for follow-up services. SACNHS efforts are supported by several GDPH staff members who are working through the subcommittee structure to assemble recommendations by Summer 2000. Then, with oversight of and support from the SACNHS, GDPH staff will be charged with implementation of the recommendations. The legislation has a sunset provision that dissolves the SACNHS after five years unless affirmative action is taken. Grant funding will not alter the inherent responsibility of or approach being taken by the SACNHS, rather, funding will assure that resources are available to support the full range of GIHSlS activity required to achieve goals determined by the SACNHS.

10.2 Structure of Screening Program

The broad structural outlines of the screening program have been described throughout this document. Recommendations regarding several specific areas highlighted in the guidance — informed consent, screening procedures and personnel, timing, and responsibility for communicating results - are being drafted in the Winter 1999-2000 as the SACNHS moves toward issuing final recommendations by the Spring 2000. Since the approach of GIHSlS on these issues has not yet been determined, provision of specifics related to the requested information is not possible. However, GIHSIS, as set forth in this application, identifies the parameters for screening activities and basis for specific recommendations.

10.3 Linkages

The Children 1st referral, linkage, and tracking system is the backbone for linkage activities. Although families can self-refer for services. Children 1st provides a single point of entry for needed services in every Georgia health district. Linkage will be accomplished by the generation of weekly, standard reports for each district identifying newborns who were referred from in-hospital screening to post-discharge screening and those not screened in a hospital. District staff will assume responsibility for contacting these families, offering an assessment visit and/or needed services, and following-up to assure receipt of services. At the point that a determination is made that any linkage, including medical home, family support, or BCW, is needed for an infant being tracked by GIHSIS, Children 1st staff will initiate the requested linkage and enter information regarding that action into the tracking database.

10.4 Follow-Up and Diagnosis

Once a determination has been made through screening that a further audiological evaluation is suggested, referral information regarding audiologists identified in the community plan will be provided

to families and linkage assistance will be offered. The community plan will establish a feedback and tracking loop between the local health department and participating audiologists. Audiologists will provide clinical evaluations to determine if a HI exists and establish a comprehensive diagnosis for those infants with a HI. Following diagnosis, the audiologist will review options with the family and primary care provider, and start the process to provide amplification for the infant, as requested by the family, and work with health department staff to determine eligibility for BCW, CMS, or other relevant programs. Recommended approaches and procedures will be specified in the audiological protocol. Medicaid/Peachcare reimbursement for audiological evaluation is part of the Governor's budget proposal.

10.5 Data/Tracking System

The SACNHS data subcommittee is concluding work on a draft workplan for the GIHSIS information system. Workplan elements include objectives, strategies, action steps, responsibilities, and timelines. Subcommittee efforts are being led by Ariane Kraus, M.P.H., the ICH/CSN epidemiologist. (See CV, Appendix A.) Prior to the start of the grant, preliminary efforts related to identification and standardization of data elements, establishment of methods for data collection, design of collection forms, and programming will be developed in order to conduct a pilot test in at least the Macon health district. Based on this three-month pilot that will start in May 2000, modifications of the system will be made with plans for a staged roll-out for hospitals already doing UNHS, in October 2000. Prior to actual implementation, based on a training/TA plan, support will be given to the hospitals, district health offices, and others responsible for data collection and submission as to system parameters and procedures. As additional screening hospitals are established, necessary training will be provided.

The information system, housed in the ICH Section, is based on an integrated newborn screening system using universal metabolic screening to populate the database. A common unique identifier will be created for each birth. Demographic and contact information from the metabolic forms are downloaded daily at a central point in the state public health office. GIHSIS forms will be merged weekly based on the common identifier. On a weekly basis, the state office will distribute reports by health district and hospital for local level follow-up. District Children 1st coordinators will enter post-hospital discharge screening, clinical evaluation, diagnosis, and intervention results of individual referred infants into the district's database. This database will produce standard client-level reports for local tracking and service assurance activities. On a regularly basis, districts will electronically submit data to the ICH Section which will produce state-level reports for quality assurance and evaluation. (See flow chart. Appendix H.) These activities will be overseen by Ms. Kraus who will work closely with the database coordinator and consultant programmer.

Standard state reports generated will include incidence, prevalence, and quality assurance. In addition, these data may facilitate future special studies, such as risk factor and outcome analyses. Ms. Kraus will be responsible for various analyses, with support from the GDPH Maternal and Child Health Epidemiology Office. Findings from these analyses will be shared with relevant staff and the SACNHS. The use of data for evaluation is more fully described in Section XI, below.

10.6 Professional/Public Education

Two distinct strategies will be used for professional and public education. One strategy involves providing the public, particularly persons of reproductive age and health professionals targeting those whose practices include services to infants with general information regarding hearing screening, diagnosis, habilitation, and services. As part of this strategy, GIHSIS staff will make presentations and exhibit information. This effort will be shaped by a social marketing approach that identifies messages and delivery vehicles and is focused on raising awareness and changing beliefs and practices. Funds are being requested for social marketing research in the first year and to produce materials in subsequent funding periods. The other strategy consists of training, technical assistance, and individual consultation and will be intensive, focused, and technically-oriented. Stale funds support these latter activities carried out through a contract with Drs. Nozza and DeChicchis. In addition, GIHSIS staff will be available for technical assistance and will work, as needed, with local hospitals, health departments and providers in customizing template protocols and manuals and addressing specific operational issues.

10.7 Family Involvement

Both GIHSIS organizational and programmatic structures have integrated family involvement. Persons with HI and parents of children with HI are members of the SACNHS, the key body in guiding this initiative. Parents of children with a disability are members of the State ICC and every local ICC and, in fact, the father of a child with disabilities serves as the chair of the State ICC. In developing this application, the planning process included meeting with a broadly constituted group of stakeholders, including persons with HI and parents of children with HI, for their input. The FHB Family Involvement Team Leader, Patty Atkins, herself the mother of a severely disabled child and an active advocate, has been engaged in GIHSIS planning and will assume an on-going consultative role.

Project Title: Georgia Infant Hearing Screening and Intervention System (GIHSIS)
Project Director: Melissa Abdulla, M.S.S.W.
Budget Period 4/10/00 to 3/31/91
Project Year: 1 Note: Employees will be hired for 10 months (205 days in Year 1)
State: Georgia

Project Title: Georgia Infant Hearing Screening and Intervention System (GIHSIS)
Project Director: Melissa Abdulla, M.S.S.W.
Budget Period 4/10/00 to 3/31/91
State: Georgia

XI. PLAN FOR EVALUATION

The GIHSIS evaluation requires inclusion of formative, process, and summative information. Any system change evaluation must encompass attention to the building blocks of the system, as well as the various techniques of putting those blocks together to create a meaningful structure. The purpose of GIHSIS and its effects on the target population can only be fully understood with a strong understanding of its building blocks and their structure. This plan provides an initial framework for the GIHSIS evaluation, with a complete evaluation plan and accompanying instruments to be developed in the first quarter of the system implementation (April-June 2000).

Evaluation Management: The SACNHS will act as the steering committee for the evaluation process while the GIHSIS management team will be fully engaged in reviewing questions and data collection methods, as well as assisting in the interpretation and appropriate dissemination of findings. The data manager and project coordinator, with the assistance of an evaluation consultant, will be responsible for the full implementation of the evaluation plan.

Evaluation Questions: The core evaluation question for this system is, does the system effectively identify children with severe hearing impairment and assure access to needed services for the purpose of improving their communication skills? Other more specific evaluation questions relate directly to each of the four primary goal areas and their associated objectives. Special attention will be paid to the issues of timeliness, completeness, effectiveness, and efficiency of the system. Additional evaluation questions may arise out of the SACNHS or other partners in the system. The impact evaluation question is, do infants who were identified and served through the GIHSIS system evidence typical communication skills at age seven? This later question will addressed with CDC funding, if it is awarded.

Data Collection Methods: System measurement requires qualitative and quantitative data. The following data collection activities and methods will provide the data foundation for the evaluation, however, additional methods may be developed, as needed, to ensure appropriateness and usefulness of these data.

• Monthly reports from the project coordinator will be designed to include data related to the overall functioning of the project, specifically stakeholder participation, public and professional education, protocol development, and training and technical assistance efforts.
• Initial inventory of GIHSlS components will provide the baseline for the system change efforts.
• Monthly reports will be created using GIHSIS information system to document the geographical spread, the completeness of testing, prevalence of failed screenings, and appropriate referrals. These data will allow for both state aggregation and mapping which can provide a portrait of HI in Georgia as well as identify potential "hot spots".
• Monitoring the progress of children identified, with HI will be provided through public health district Children 1st quarterly reporting. These data will help to ensure on-going appropriate referrals are being made as well as identify potential service gaps in specific areas.

Dissemination: Evaluation findings will be incorporated into GIHSIS decision-making regarding operational and policy matters through a regular review of findings to date by the management team. Further, beginning in December 2000, at least semi-annual reports will be provided to executive FHB staff, the SACNHS, and stakeholders and partners that describe the impact and progress of the GIHSIS implementation. These reports will both keep them informed, encourage their continued active involvement in the implementation process, and identify specific issues that need policy resolution. In addition, presentations will be made and publications written to further disseminate GIHSIS results beyond the immediate stakeholder community.