FLORIDA PROJECT NARRATIVE

PURPOSE OF THE PROJECT: The purpose of the Florida Universal Newborn Hearing Screening and Intervention Project is to implement a sustainable statewide universal newborn hearing screening program coordinated among Florida's birthing hospitals and to provide appropriate follow-up services that are comprehensive, family-centered, culturally-competent and effective in meeting the needs of Florida's children with hearing loss and their families.

In 1998, Children's Medical Services (CMS) provided seed monies to 32 hospitals to purchase UNHS screening equipment and initiate a universal newborn hearing screening (UNHS) program. A total of 14 additional hospitals in the State had already been voluntarily providing UNHS services. Although CMS was able to provide funding to hospitals to purchase hearing screening equipment, there was no statewide support for follow-up activities or for systemic data collection. National incidence figures, affirmed by a pilot study completed in Florida in 1998, suggest that approximately 2.5 to 3 children per 1000 have significant hearing impairment. Based on these survey results, it appears that the average age of detection for hearing impaired children not screened at birth remains between 18 and 30 months.

On October 1, 2000 Florida legislation was implemented mandating universal newborn hearing screening of all newborns in Florida within the first 30 days of life. This legislation set the stage for hospital compliance to identify babies with potential hearing loss by one month of age, however, effective identification and subsequent intervention will only occur via a coordinated statewide effort. The Department of Health, Children's Medical Services received grant funding in September, 2000, from the Centers for Disease Control to establish a Early Hearing Detection and Intervention surveillance and tracking system (EHDI-CDC). This funding also allowed for the location of pediatric audiologists throughout the state so that the goal of diagnosis by 3 months of age is realistic for Florida to attain. Even with the improvement in data collection and management currently underway, Florida continues to have significant gaps that will impact the effectiveness of UNHS efforts.

With implementation of UNHS throughout the state, an estimated 85% increase in the number of children diagnosed with hearing loss early and enrolled in the CMS Infant and Toddler Early Intervention Program is anticipated. This projects to roughly 450 to 600 children being identified with hearing impairment annually. Florida's lack of early identification is illustrated by only 81 newborns, out of an annual birthrate between 190,000 and 200,000, that were identified annually as being hearing impaired during each of the last several years. The number of identified children with hearing loss in Florida is currently reported as 3545 (12/1/99 count). Of children who are age birth through two, 196 are being served by DOH Early Intervention Programs. There are 3349 children who are qualified as deaf or hard of hearing in grades pre-kindergarten through grade twelve. Based on the low numbers of identified young children with hearing impairment, much effort is needed to improve identification of these children.

The purpose of this UNHSI application is to obtain funds that will move Florida toward implementing a true statewide screening and intervention effort. There are 4 major goals that are addressed within this grant application. First, to prioritize the need to prevent identified babies from being lost to follow-up. Second, to address the significant hearing-related training needs of early interventionists, hospital screening personnel and interested audiologists in the State. Third, to develop a targeted strategy to increase family-to-family contacts for families that have children with hearing impairment. Finally, to improve linkages with the child's medical home and the knowledge base of physicians on the importance of universal newborn hearing screening and the need for a responsive intervention system. The expected benefit of these objectives is: an increase in the number of infants identified with hearing loss to a level that is closer to that which is anticipated from known incidence rates; a subsequent increase in the number of infants and toddlers receiving early intervention services; an improvement in developmental language skills of early identified infants as a result of more highly trained interventionists available throughout the State; and increased family involvement opportunities.

The Department of Health (DOH), Children's Medical Services (CMS), is the Florida Title V designated agency and the designated lead agency for the IDEA, Part C, Infants and Toddlers Program. Historically, CMS has been based on a public- private partnership to provide specialty medical services for children with special health care needs. CMS administers a statewide network of medical specialty clinical programs, medical foster care, regional programs for genetics, pediatric HIV and poison control, the Perinatal Intensive Care Centers Program, the Infant Metabolic Screening Program, the Child Protection Teams, and the Infants and Toddlers Early Intervention Program. The Department has built a system of locally based providers, families and coalitions with informal as well as formal mechanisms for providing input into the status of health services delivery for families and children.

Most recently, CMS received grant funding from the Centers for Disease Control to establish a statewide Early Hearing Detection and Intervention tracking and surveillance system for children identified through universal newborn hearing screening. The objectives of the EHDI-CDC grant will complement the scope of this UNHSI grant and can move Florida toward implementing an effective statewide hearing screening and intervention effort.

The Florida Department of Health is directed by the Secretary who is also the State Health Officer. The UNHSI project would be organizationally within the Bureau for Prevention and Early Intervention within the Division for Prevention and Interventions, Children's Medical Services . (INSERT Organizational Chart).

The CMS Infants and Toddlers Early Intervention Program (EIP) consists of three major components: the Developmental Evaluation and Intervention Program, Infant Hearing Impairment Program, the Individuals with Disabilities Education Act, Part C Program, and F.S. 393, which serves children birth to age three. Infants and toddlers birth to age three at risk for hearing impairment, and those identified as hearing impaired are eligible for services provided by the Early Intervention Program.

Children's Medical Services has an established statewide network of fifteen Early Intervention Programs with core providers that are responsible for local coordination of the Infants and Toddlers Early Intervention Program. CMS contracts annually with these providers. Each Early Intervention Program has one or more Family Resource Specialists to provide family support services. A risk-based infant hearing screening program has been coordinated through these community providers for many years. Mechanisms are in place, through the fifteen Infant and Toddler Early Intervention Program Regional Policy Councils, to coordinate collaborative activities within hospital catchment areas to provide support for implementation of universal newborn screening programs.

Relevant Department of Health interagency agreements will be described in the collaboration and coordination section (page 35).

This project will be an integral part of the Florida Infants and Toddlers Early Intervention (EI) Program. Existing resources used to support the overall EI Program will also be available to support the UNHS Project. Staff in the Bureau of Prevention and Early Intervention will be responsible for management of the project. Staff currently assigned responsibility for coordinating the risk-based Infant Hearing Impairment Program activities will provide support to this project

The EI Program has an extensive data management system already in place. The EI Program data system is a WEB-based system accessible to any authorized provider for data entry or data reporting. The WEB-based system facilitates user access and is critical to the reporting procedures. Florida has developed as a component of the EHDI-CDC grant. The EHDI tracking and surveillance system will be field-testing this summer (2001). The surveillance and tracking system should be fully operational by October 1, 2001. This will allow hospitals to begin to enter screening data which will provide child information to facilitate follow-up and provide data for program evaluation.

Prior to UNHS legislation implementation in Florida, there were a small number of well-established UNHS programs in some large population areas in Florida. These hospitals represented 40% of annual births. Once the EHDI -CDC surveillance and tracking system is fully operational, there will be an opportunity for consistent and coordinated data collection across these UNHS programs and the hospital programs that implemented UNHS since legislation was implemented. EHDI-CDC system will also provide a well-defined method by which screening data can be efficiently shared and linked with the CMS EI Program data system to facilitate tracking of referral and follow-up activities and entry into intervention of identified babies.

As compared to the national goals for universal newborn hearing screening, the Florida EHDI-CDC grant objectives specifically target developing a sustainable data system that will attain a 95% hearing screening rate of newborns prior to hospital discharge and a specified system for tracking audiological diagnosis by age 3 months. The UNHSI project objectives as described in this grant will support effective identification and diagnostic procedures by providing training and information to hospital personnel, audiologists, and physicians to increase coordination with the medical home. The UNHSI project will target entry into appropriate intervention services by 6 months of age by providing a specified method of follow up of identified babies and linkage to the child's medical home, providing training for early intervention service providers, and providing increased opportunities for families to get information on appropriate services and supports.. These two grant-funded projects will work in combination to allow Florida to achieve the national goals for universal newborn hearing screening and intervention.

Three of the four broad goals of this UNHSI grant will be incorporated into the EI Programs throughout Florida. Therefore, the project will benefit from the local networks that have been established throughout the State as part of the EI Programs. Local hospitals are already familiar with referral procedures to local EI programs for infants with special needs, so expanding the networks to include a greater focus on newborn hearing will be easily facilitated.

Florida has an annual birth rate of 200,000 births per year. Approximately 90% of these births occur in a hospital setting with the remaining 10% happening in birthing facilities or in the home. Approximately 100 hospitals are certified to provide maternity services and there are approximately 50 non-hospital based birthing facilities. Following the 2000 legislative mandate, all birthing facilities are responsible for obtaining appropriate hearing screening equipment and implementing UNHS programs. Many of these hospitals are located in rural areas and do not have the benefit of audiologists located within their community to provide assistance or services to the families of infants identified with potential hearing loss.

Florida is the fourth most populous state in the nation, increasing in population by 23.5% since the 1990 census. Ethnically, Florida is 17% Hispanic, 59% Caucasian, 17% African American and 7% Asian/Native American. For calendar year 2000 the children served through the EI Program were also ethnically diverse: 56% were Caucasian, 17% Hispanic, 2% Haitian, 23% African American, 0.65% Asian, and 0.12% Native American. The primary languages spoken in homes of children receiving early intervention services, by order of prevalence, is English, Spanish, and Creole. Economically, 44% of births in Florida are reportedly from mothers/families eligible for Medicaid funding. The 2000 universal newborn hearing screening legislation provided 2.8 million dollars to Medicaid to provide funding for babies from these low-income families and requires reimbursement on the part of Medicaid, HMOs, and other forms of insurance. Throughout Florida, 20% of the population under 18 years if age is uninsured and is comprised of children of undocumented aliens, the working poor, and those choosing not to purchase insurance.

Based on national statistics and estimates of incidence, it is anticipated that 600 children will annually be confirmed as having moderate to profound degrees of hearing impairment (incidence = 3:1000; 2000 birth rate =200,000). In contrast, an average between 80 and 90 have been reported to local EI Programs each year primarily through the risk-based screening programs. With implementation of UNHS throughout the state, we anticipate an 85% increase in the number of children diagnosed early with moderate to profound hearing impairment and enrolled in intervention programs. Research has prompted additional consideration of children with milder degrees of hearing loss that will also highly benefit from early amplification and attention to communication development. Many children with mild, minimal, high frequency, and unilateral hearing loss will also be identified by UNHS. Based on prevalence figures, approximately 3000 infants can be included in the potential number of children requiring amplification, developmental evaluation, or early intervention services.

Each of the fifteen EI Programs has had a risk-based infant hearing impairment screening program for many years. As part of this activity, each EI Program has an individual designated as the Infant Hearing Impairment Program (IHIP) coordinator. These individuals have been responsible for ensuring that paper screening for risk factors occurred for infants in designated neonatal intensive care units and for submitting annual program statistics. These individuals range from experienced audiologists to individuals with no specific audiologic training but experience with the paper screening program. Also, these coordinators may or may not be involved with the local hospital UNHS efforts. Through the UNHSI grant activities will be coordinated between the state-level follow-up activities, IHIP personnel, the EI program Directors and service coordinators to ensure that infants and toddlers with hearing impairment receive appropriate services.

Florida needs to improve the identification and follow-up procedures, and the provision of early intervention services to infants with hearing loss. The development of language skills of early identified infants as a result of more highly trained interventionists available throughout the State and increased opportunities for families to obtain support and information about appropriate services needs to be addressed.. The Florida EHDI Advisory Council identified the four primary areas of need as: too many babies lost to follow-up; a need for specialized training for audiologists, early intervention service providers and hospital screening personnel; more involvement and support of family members; and the need to improve the knowledge base of physician and linkages with the medical home. The following goals reflect these four identified areas of need within Florida.

Goal 1: Prevent babies from being lost-to-follow-up

For many years, the State of Florida has had a risk-based hearing screening program in conjunction with the Early Intervention Program. This service has been extremely valuable but, unfortunately, covers only approximately 7-8 percent of the children born in Florida. One of the recommendations from a 1998 Florida Pilot UNHS Project emphasized the need for systematic tracking and follow-up of children who did not pass the initial screenings. Not all UNHS screening programs in Florida directly involve audiologists nor are local audiologists located in all communities throughout the state. Even in hospitals with well -developed UNHS programs, involved audiologists have reported lost-to-follow-up rates of 30-40%, despite use of follow-up techniques such as sending periodic written reminders. There is little reason to expect the lost-to-follow-up rate to improve without personal contact by individuals whose time is dedicated to the purpose of following up identified babies. t. In hospitals without the active involvement of audiologists and that do no follow up with families after providing information at discharge, it is reasonable to believe that fewer than 60-70% of babies identified with potential hearing loss would actually follow- through and receive an audiological evaluation.

Goal 2: Improve services via training

Audiologists: As part of the EHDI tracking and surveillance grant from the Centers for Disease Control, CMS surveyed the 850 licensed audiologists in the State and identified 130 audiologists reportedly providing services to infants and toddlers. Most of these audiologists evaluate less than 20 infants per year and only 1/3 of these respondents have the equipment needed to obtain the information required for fitting hearing aids to babies less than 6 months of age. Of the total number of facilities providing services to infants, less than half accept Medicaid. The survey identified four primary areas of interests to audiologists related to improving their services to young children: family counseling, amplification fitting, amplification verification, and diagnostics using auditory brainstem response audiometry to obtain frequency specific information for hearing aid fitting. A symposium will occur in July for audiologists and early intervention providers. Speakers will address the four audiology topics identified in the survey. Ongoing training opportunities are critical if we are to increase the number of audiologists that are competently trained and experienced in working with very young children.

Early Intervention Providers: A preliminary needs assessment was developed in conjunction with the Florida School for the Deaf and the Blind to determine the availability of early interventionists throughout Florida that have special expertise or education in serving families of children with hearing loss. The survey was conducted in 2 of the 15 EI programs. Training has begun in these programs targeting educational needs of early interventionists. Specifically, the training targets: language acquisition, effect of hearing loss on early development, effect of hearing loss on family relationships, appropriate range of services, knowledge of relevant laws, communication options available for children with hearing loss, and involvement of deaf and hard of hearing role models. An extension of this survey for the remainder of the EI programs is one of the proposed activities under this grant. In addition, there are no materials available from the Department of Health or the Department of Education that have been written for early intervention service providers describing the needs, intervention options, or resources available for children with hearing loss.

Hospital UNHS personnel: Equipment distributors reported that 50 automated ABR units, 89 OAE units, and 4 combined ABR/OAE units have been purchased by hospitals in Florida for UNHS programs, indicating a high compliance rate with legislative mandates. A June 2000 survey of 46 hospitals identified as providing UNHS screening indicated that training for UNHS screening personnel was highly varied and ranged from 10 minutes of training during a routine orientation to the hospital unit, to 2 weeks of training with supervision. Overall, information received from this survey indicated a need for more indepth training of hospital personnel to control over-referral rates and tighter referral and follow-up up procedures to minimize the number of babies lost to follow up. A one-year-post-UNHS-implementation survey of the hospital UNHS programs is one of the proposed activities under this grant to identify current UNHS program parameters and to hone specific training needs.

Goal 3: Increased family support and involvement

The audiology survey, preliminary EI program survey, and the lack of support specific to the needs of parents of children with hearing loss all highlighted a need for coordination with the respective Early Intervention Programs for timely intervention services, sharing of information with families regarding intervention options, parent education regarding hearing loss, and timely fitting and management of hearing aids. To date, there has been no concerted effort to educate the Family Resource Specialists (FRS), employed by each EI program, regarding the special needs of families of children with hearing loss. Furthermore, no concerted effort has been made to reach out to the state chapter of the Alexander Graham Bell Association or audiologists to link knowledgeable and experienced parents of hearing-impaired children with FRS personnel in each EI program area. Finally, no concerted effort has been made to recruit interested families of children with hearing loss to attend the annual Family CAFÉ meeting developed for families of children with disabilities. In addition, there are no materials available from the Department of Health or the Department of Education that have been written for parents describing the needs and resources available for children with hearing loss. Each of these issues will be addressed through the UNHSI grant activities.

Goal 4: Improve support from the medical home

Communication with audiologists as a result of the mass survey revealed some concerns regarding support by the medical home in regard to services for children with hearing loss. Almost 10% of audiologists responding listed delayed medical approval as a cause for delays in fitting amplification on infants and toddlers. Additional reports have been received regarding delays in amplifying babies ("hearing aids aren't necessary until age one") and not referring for audiological evaluation to confirm the presence of normal hearing ("failing screening was probably due to ear infection"). There has been no concerted effort to link with the State Academy of Pediatrics Chapter, provide inservice training at medical meetings, or to develop written summary materials describing the incidence and needs of infants and toddlers with identified hearing loss.

The Department of Health works closely with the Department of Education on many issues related to health services for school-age children. An interagency agreement establishes referral criteria for infants identified with hearing impairments to the local school districts for educational management evaluation and services and the requirement for school districts to refer infants and toddlers identified with significant sensory impairments to the CMS Infants and Toddlers Early Intervention Program for eligibility determination.

DOH also has an interagency agreement with the Agency for Health Care Administration (AHCA), the state Medicaid agency. AHCA and DOH collaborate on many program issues including the implementation of Florida KidCare, targeted case management, and provision of early intervention services for infants and toddlers.

The Florida School for the Deaf and the Blind has recently entered into a collaborative agreement with Children's Medical Services. The preliminary result of this agreement has been a joint needs assessment of two EI programs in regard to training and consultation needs for improving interventionist knowledge about identifying and appropriately serving the needs of children with hearing loss and their families. As a result of the needs assessment, training is currently being conducted by FSDB in 3 areas in the State and an ongoing consultation service model will be offered to these EI programs.

CMS has defined and will soon be field testing data management procedures as part of the EHDI tracking and surveillance grant from CDC. The outcome of these efforts will be a seamless procedure in which hospitals screen babies following a specific protocol and report data relating to screening and babies identified as failing screening to CMS.

The UNHSI project described by this grant will be incorporated into the existing Early Intervention Program. Local hospitals are already familiar with referral procedures to local EI programs for infants with special needs, which should simplify the process of expanding the networks to include a focus on newborn hearing. Each of the fifteen EI Programs has an individual designated as the Infant Hearing Impairment Program coordinator. These individuals are usually audiologists with extensive experience in infant hearing screening.

Representatives from the Agency for Health Care Administration, the Department of Education, the Florida School for the Deaf and the Blind, and the Florida Hospital Association are participating members of the Early Hearing Detection and Intervention Advisory Council.

Based on needs assessments, there are four broad goals specified for the Universal Newborn Hearing Screening and Implementation project. Specific objectives for year one of the UNHSI grant are provided below. Specific objectives for each year of the grant along with how objective outcomes will be measured has been included in the Methodology section, and is specified for each objective.

Goal 1: Prevent babies from being lost-to-follow-up

Objective 1: Determine the current effectiveness of UNHS programs by performing a one year post-legislation implementation survey of birthing facilities (percent screened prior to discharge, referral rate, lost-to-follow up rate, etc.)

Objective 2: Improve lost-to-follow-up rate to a maximum of 40% via improved coordination of services between hospital, medical home, audiologist, parents, and early intervention to infants failing UNHS. Lost-to-follow-up rates will improve until a 75% successful follow-up rate is achieved at the end of year four.

Goal 2: Improve services to babies and families via training opportunities

Objective 1: Audiologists Improve the comfort level of audiologists providing services to infants via inservice education. Subsequent years will target an increase in pediatric skills of audiologists, number of pieces of ABR equipment available for use in diagnostic testing, and an increase in the number of pediatric audiologists practicing in the State. More comfortable, skilled audiologists with appropriate equipment available should improve services to babies and families.

Objective 2: Early intervention service providers: Perform a needs assessment to determine who is providing EI services to children with hearing loss and their families, their training needs, and types of services provided Following this targeting of training needs and personnel, services to families will be improved by providing training for at least one person from each EI program. Subsequent grant years will provide training to additional EI service providers, resulting in an improvement in the rate of language growth of infants and toddlers with hearing loss. Training of EI service providers should result in improved sensitivity and services to families and increased gains in language development of young children with hearing loss.

Objective 3: Hospital screening personnel: Improve referral rates of children failing UNHS by providing training opportunities to increase the skills of hospital screening personnel. Provide a method for continued competency training to be made available to birthing facilities across Florida. Reducing the number of referrals for hearing evaluations to as few as possible will reduce the number of infants requiring follow-up and improve the availability of follow-up services to families of infants that require hearing evaluations.

Objective 4: Physicians: Increasing the knowledge base of physicians (primarily family practitioners and pediatricians) will improve response of physicians to family concerns and relationships between the medical home and other service providers. A medical consultant will provide educational opportunities via professional meetings and informational flyers and

Goal 3: Increase family support and involvement

Objective 1: Family Resource Specialists employed in each EI program will receive training regarding hearing impairment issues to improve their ability to support families of children with hearing loss. Subsequent information and training in hearing impairment issues will be provided to FRS personnel.

Objective 2: Parent information materials will be developed (i.e. 60 page resource guide) to be distributed by EI programs to parents or children with hearing loss who are enrolled for EI services. In subsequent years the resource guide will be updated and translated into Spanish. Adaptation of other states' Public Service Announcements about UNHS for use in Florida will be explored. Increased availability of resources to support children with hearing loss and their families, along with increased public awareness of the importance of hearing loss and early identification should enhance support and involvement of parents.

Objective 3: A sense of support can be enhanced by gathering parents of children with similar disabilities together for networking and education. A minimum of one family will be recruited from each EI region to attend the annual Family CAFÉ meeting for parents of children with disabilities. More families will be encouraged to attend in subsequent years. Family involvement and participation in Family CAFÉ programs should enhance their value and willingness to participate with the Family Resource Specialists to provide support to parents of infants who have been newly diagnosed with hearing loss and are entering the intervention services system.

Goal 4: Improve support from the medical home

Objective 1: Support of hearing-related issues from the medical home, and linkage between the medical home and other service providers will improve lost-to-follow-up rates and efficiency of support services to families. A medical consultant hired under this UNHSI grant will establish supportive linkages with physician groups to help develop closer associations between medical homes and hospitals. In cooperation with contacts from state physician groups, it is a goal that these physicians will develop goals for improving the relationship of the medical home to other entities that provide services to these children.

This project will be an enhancement to the Florida Infants and Toddlers Early Intervention (EI) Program. While existing resources used to support the overall EI Program will also be available to support the UNHSI Project, additional resources to ensure appropriate infrastructure to support a statewide UNHSI program are required. The EHDI-CDC tracking and surveillance grant has provided funding to support an Advisory Council, development and management of a database reporting system, as well as a 0.6 FTE Audiology Consultant.

To achieve the goal of an effective statewide universal newborn hearing screening and intervention program, additional resources are required. Currently, there is no organized manner in which training is provided to hospital screening personnel to ensure optimal referral rates are obtained and parents receive screening results in an accurate and sensitive manner.

As important as effective screening, good follow-up is critical if the efforts put forth to screen all of the babies in Florida are to be worthwhile. Specifically, there is currently no mechanism within the EI Programs or any other state agency to assume responsibility for assisting families in accessing audiological evaluations, assuring linkage with the infant's medical home, or linking infants with hearing loss and their families to early intervention services. It cannot be assumed that notice of a hearing screening failure provided to parents at the time of hospital discharge will compel them to seek further evaluation of their baby's hearing. If Florida is to serve the children identified by UNHS in a timely and effective manner, a personal contact by a knowledgeable person to develop rapport with the family, inform them of why an evaluation is important and to assist them in obtaining these services is needed.

Likewise, if a family has undergone the audiological diagnostic process and is referred to an EI Program that has no one trained in the special needs of an infant with hearing loss, the chances of effectively ameliorating the impact of the hearing loss on the child's language, social, cognitive and behavioral development are significantly reduced. With an average of only 81 infants per year being identified throughout the state with hearing loss, the EI Programs have not encountered a significant need to identify a person or persons to specialize in this area. UNHSI is anticipated to identify seven (7) times as many babies with hearing loss than have previously been flowing into the EI system. The EI Programs require further training to be prepared to provide appropriate intervention programs for this number of infants and their families.

Furthermore, the EHDI-CDC tracking and surveillance grant has triggered a statewide survey of audiologists to identify those who are experienced and willing to provide services to infants, toddlers and their families. To increase the skill level of these audiologists as well as increasing the number of audiologists competent to work with this age group, a coordinated effort is needed to provide educational opportunities to audiologists in the State.

Also integral to optimal development of infants and toddlers with hearing loss are opportunities for families of children with hearing impairments to network together. Emotional support between family members and families with similar concerns is beneficial to the health and development of children with hearing loss. CMS currently has Family Resource Specialists within each EI Program who will be directed to add this focus on families with hearing loss into their annual work plans.

The involvement and importance of the medical home in supporting the needs of a child with hearing loss cannot be overstated. Educational and collaborative efforts to improve the knowledge base and understanding of physicians regarding the constellation of needs of young children with hearing impairment is required so that they can best support the family throughout the infant's childhood.

A successful statewide UNHS and intervention program requires that the public and practitioners have some level of knowledge of the existence of the UNHS program, its purpose and benefits. Florida has developed brochures to inform families of the need for the hearing screening and follow-up. Distribution and development materials for professionals (physicians, audiologists, EI service providers) and information aimed at a broad audience (parent resource guide; Public Service Announcement/PSA) are important objectives to achieving the goal of an effective statewide UNHSI program. Florida requires additional fiscal resources to assist in the development of materials specifically targeted to UNHSI practitioners and to develop and distribute PSAs throughout the state.

An Advisory Council, formed as part of the EHDI-CDC grant to provide guidance in the commission of project objectives can also encompass the UNHSI grant, if funded. The Council includes representatives from the following constituencies and groups: family members of children who are hearing impaired, Early Intervention Programs, Florida Speech and Hearing Association (FLASHA), Florida Pediatric Society, hospitals, CMS, Agency for Health Care Administration (ACHA- the Florida Medicaid agency), Department of Education, service providers, and others. The council has 15 members and meets at least quarterly.

The Florida UNHSI Project will be administered through the Children's Medical Services' Bureau of Prevention and Early Intervention. The project will be integrated into the Infants and Toddlers Early Intervention Program. Currently one CMS staff person has responsibility for the risk-based hearing screening program; this individual will work on this project and provide broad project coordination. Utilizing CDC-EHDI grant funds, CMS hired an Audiology Consultant to be the liaison with FSDB, the Audiology community, early interventionists providing services to families of children with hearing loss, and to develop the necessary training and public awareness materials.

The methodology proposed for executing the grant objectives have been specified below. Information for each of the potential four years of the grant is included to show the overall plan for UNHS in Florida. For continuity, evaluation information is included following each objective.

Goal 1: Prevent babies from being lost-to-follow-up

The analysis of a one year post-legislation implementation survey will provide hospital specific information in regard to the current effectiveness of the UNHS programs, including percent of newborns screened prior to discharge, referral rates, and lost-to-follow-up rates. Funds from the UNHSI grant will be used to hire 2 UNHS Follow-Up Coordinators for the state of Florida. These coordinators will divide the responsibility of obtaining information from the EHDI-CDC database about infants throughout the State that have been identified as failing UNHS. The Coordinators will then be in contact with the infant's medical home and provide a link between the medical home, parent, audiologist, and early intervention program. At least one of the Coordinators will be required to be fluent in speaking Spanish. Although a large number of infants failing UNHS is expected (7000-12,000), it is anticipated that the Coordinators will be able to improve the lost-to-follow-up rate and EI enrollment rates to 60% by the end of the first year, with successful follow-up occurring in an additional 5% of identified babies per year throughout the length of this grant. Each Coordinator will maintain a log of contacts to document the number of successful contacts and to pinpoint areas in which a breakdown in the follow-up system is occurring. This information will be used to evaluate the follow-up program and need for additional training or services.

Goal 2: Improve services to babies and families via training opportunities

Audiologists: It is critical that audiologists be included in the scope of training opportunities offered in relation to UNHS and intervention of children with hearing loss and their families. A second Florida Symposium for Early Childhood Hearing Loss will be planned in conjunction with the Florida School for the Deaf and the Blind, with priority given to a location in the southern half of the state (the July 2001 symposium will be located in north Florida). This symposium will be conducted within a collaborative agreement between CMS and FSDB with planning spearheaded by the EHDI project audiology consultant and will be supported by training funds specified in the EHDI grant.

Early intervention service providers: This UNHSI grant project intends to provide intensive training opportunities for early interventionists. Following a needs assessment survey of the 15 EI programs, a minimum of one and maximum of two persons will be identified from each EI program to attend intensive training in the area of appropriate provision of services for families of hard of hearing or deaf infants and toddlers. Two 4-day workshops are anticipated and will be comprised of complete training in the SKI-HI curriculum (6 days) and additional training in communication options and methods, to develop an understanding of different sign systems, in contrast with ASL, in contrast with auditory verbal therapy and aural-oral approaches so that interventionists can have a knowledge base on communication options to share with parents. Each EI program will receive one set of supporting materials. Training personnel will be from the Florida School for the Deaf and Blind, currently the location of all SKI*HI training in Florida. In addition, the Communication Disorders Department at Florida State University and/or University of Florida will provide training personnel to address educational needs outside of SKI*HI.

Hospital screening personnel: Training to hospital screening personnel is necessary if referral rates following UNHS are to be optimal. The legislation mandating UNHS requires that training occur, but does not specify by whom or how often. Hospital personnel often have difficulty being released from their duties to attend off-site trainings. In addition, reports within the state suggest a turnover rate of 33% per year in hospitals, requiring training to be easily repeated as staff is replaced. Therefore, expertise within the State will be tapped to produce interactive computer CD programs that will present the background information on why it is important to identify newborns with hearing loss, equipment-specific hearing screening techniques, competency checks along every point during training, how to submit data to the EHDI-STS, and how the data will be used for follow-up services to assist families. Due to expense, CDs will be produced only for the 2 most commonly used pieces of screening equipment in the State. In Year 1, approximately 80 CDs will be produced for the Algo II and GSI 70. In Year 2, a training CD for the GSI 60 will be produced, along with a video and powerpoint formats of the same training information. In Year 3, the Algo I will be made a training CD and the initial CDs produced will be updated as needed. In the final year of the UNHSI grant a training video for the EchoScreen will be produced and all training products will be updated as necessary.

Physicians: There is a need to improve the knowledge base of physicians about childhood hearing loss issues and to improve the links between children's medical homes and UNHS hospitals We propose to address these needs by hiring a medical consultant whose responsibilities would include presentations at state meetings of physicians groups (pediatricians, family physicians, OB-GYN). The medical consultant would also be involved in developing brief informational flyers that are aimed at improving the knowledge base of physicians providing standard follow-up care to children that fail UNHS screening. Funds will also be requested in the EHDI grant to support development and mailing of these materials for physicians. The medical consultant will forge relationships with the physician groups in the state to generate a list of information needs for their members, which will be used to develop the informational flyers and meeting presentations.

Successful early intervention does not occur without informed family involvement and participation. The Family Resource Specialists (FRS) employed by each EI program (44 in State) are responsible for family support and act as liaisons between families and necessary agencies and programs. In order to support families of children with hearing loss optimally, the FRS require training in the effects of childhood hearing loss on family relationships, communication, and overall needs to be addressed when a child has a significant hearing loss. UNHSI funds are sought to support a meeting of FRS personnel and provide important training materials.

Currently, there are no materials available from the Department of Health or Education that describe the early needs of children with hearing loss and resources available to address those needs. A resource guide will be developed using resource guides from other states as a template and including information specific to Florida resource. This guide will be approximately 60 pages in length and will be available in English only in year one of the grant. In year two, it is proposed that a Spanish translation be completed to serve Spanish-speaking families that comprise almost 20% of the Florida population. A public service announcement is also an objective to raise the interest in infant hearing of parents and the general public. Several states have produced PSAs that may be feasible to adapt in some manner for use in Florida.

Finally, Florida holds an annual conference for families with family members with developmental disabilities or special health care needs. This conference, Family CAFÉ, is sponsored by a variety of agencies and organizations and the Governor of Florida always attends to specifically to address the education and networking needs of parents of children with disabilities. To date, families of children with hearing impairment have not been targeted to attend this meeting. Recruiting incentives will include family support for travel costs and child-care, as needed. Encouraging families of children with hearing loss to attend the Family CAFÉ will assist in developing informed and motivated parents who are interested in participating with the Family Resource Specialists in supporting families of children who have recently been diagnosed with hearing loss as they enter intervention services.

Goal 4: Improve support from the medical home

Members of the Early Hearing Detection and Intervention Advisory Council will be asked for input on activities that will strengthen linkage with the medical homes and other service providers to develop a seamless referral and follow-up system for UNHS-identified babies statewide.

Once relationships with the state physician groups are formed, the medical consultant will use these relationships to address the issue of medical home involvement with children that have failed UNHS screening. Through a cooperative effort, it is a goal that these physicians will develop goals for improving the relationship of the medical home to other entities that provide services to these children.

Specific evaluation activities have been described under each objective in the methodology section. In general, determination of the impact of UHNS on the health/medical, developmental, and educational outcomes for Florida's children is critical to assessment and evaluation of the effectiveness of the UHNSI project. The assessment and evaluation protocols for the project, quality assurance procedures, and needs assessment for further training objectives will be developed as described in the methodology section. Surveys of audiologists, early interventionists, hospital screening personnel, and Family Resource Specialists will be used to develop targeted training goals and objectives.

The UNHSI project will look at both program standards and program outcomes. Program standards will focus on the number of families assisted by the EIP UNHSI Follow-up Coordinators, lost-to-follow-up rates, and number successfully enrolled in early intervention programs. Program outcomes will investigate child status related to enrollment and participation in the Infants and Toddlers Early Intervention Program, functional status in the areas of communication and language development at key developmental points, parent satisfaction with early intervention services, access to health/medical care and early intervention services, and program placement at age three (either in a school district prekindergarten disability program or other program). Analysis of program outcomes will be facilitated by the fact that the UNHSI project will be a component of the EI Program which is a program within CMS and by the existing collaborative relationship with the Florida Department of Education (DOE). The EI Program data system has the ability to match and track child specific records from the EI Program database through the DOE student database. EI Program records can also be matched and tracked to identify children who are being served through the CMS specialty medical clinic programs.

Reporting requirements are an essential component of the development of assessment and evaluation protocols. Each birthing facility provider (hospital, birthing facility, home birth caregiver) will be able to report information on the WEB-based reporting system every time an infant does not pass two hearing screening procedures as per the requirements of the CDC-EHDI tracking and surveillance grant. Community audiology providers will submit child specific follow-up screening data on each child screened for entry into the Referral data set. The local EI Program will be responsible for entering data for infants identified with hearing impairments who are referred to their program for early intervention services. Data provided for these children will include results of evaluations, functional status data, service recommendations and interventions provided, and demographic data (Appendix 6 EIP Data Forms).

The quality assurance procedures for the UNHSI Regional Coordinators will be an adjunct to the EI Program quality assurance program. Data reports and analyses will be generated and reviewed on a quarterly based. It is anticipated that standard reports related to assessment of program standards will minimally address: screening/referral profiles by hospital and other facilities; profiles by county and by EI Program service area; profiles based on SES data (e.g., Medicaid, insurance, HMO, no insurance); and by diagnostic information. From these data profiles, statistics can be derived that reflect "averages" for program standards such as initial screen compliance, screen failure rates, false positive rates, and referrals. The data can be used by the Advisory Council and consultants to identify UNHSI best practice standards and to target areas in need of training or technical assistance. This data can also be used to determine FTE requirements for effective screening programs, numbers of community providers needed, etc. Data will also be generated and reviewed on a quarterly basis related to program outcomes will minimally address: percentage of UNHS identified infants with a primary medical/health care provider identified; number of UNHS identified infants enrolled in local school district hearing impairment programs; age of referral of UNHS identified infants to the EI Program, discharge status of UNHS identified infants. The data can be used by the Advisory Council and consultants to identify UNHS best practice standards and to target areas in need of training or technical assistance. Program outcome data that tracks child placement in local school district program will be generated on an annual basis, since this information is provided by DOE on an annual basis. Analysis of program outcomes data will provide information on the overall effectiveness of the UNHS program in attaining the stated program goals and improving the health, medical and developmental status of infants.