A. Organizational Setting: The Wisconsin Sound Beginnings (WSB) program will be carried out through the Wisconsin Department of Health and Family Services (DHFS), headquartered in Madison. The Children with Special Health Care Needs (CSHCN) Program will work jointly with the Part C of IDEA (Birth to 3 Program) within DHFS and will collaborate with many other external partners, including the Wisconsin Association for Perinatal Care (WAPC) and the Wisconsin Personnel Development Project (WPDP).

B. Purpose: The purpose of this program is to ensure that as Wisconsin hospitals implement UNHS, a system of professional and family education, provider coordination, tracking, referral, follow-up and evaluation is coordinated and integrated. This will develop a program infrastructure to ensure that children and families receive family-centered, culturally-competent and community-based services that are the best and most appropriate for their child's hearing needs.

C. Problem: The early identification of infants with hearing impairment is an important public health objective. Hearing and language experts report that if children who have a hearing loss are not identified early it is difficult, if not impossible, for many of them to acquire the fundamental language, social, and cognitive skills that provide the foundation for later schooling and success in society. The National Institutes of Health, the Joint Committee on Infant Hearing, the American Academy of Pediatrics, and the American Speech-Language Hearing Association have all recommended that infants with hearing loss be diagnosed before three months of age and receive intervention by no later than six months of age.

According to a 1998 Wisconsin survey of 1997 births, only 10% of Wisconsin's newborns had their hearing tested, while it is known that permanent congenital hearing loss is one of the most frequently occurring birth defects. In October 1999, Wisconsin Governor Thompson approved legislation that requires Wisconsin hospitals to perform hearing tests on at least 88% of newborns in the state by August 5, 2003. If hospitals collectively do not achieve this level of testing, then all hospitals will be required to perform UNHS. However, there is a significant concern that while hospitals may start to implement UNHS that there will not be a mechanism for the development and implementation of a systemic referral, follow-up, tracking, and statewide evaluation.

D. Goals: The WSB program's five goals are:

• Assess the statewide status of UNHS and follow-up programs in Wisconsin.
• Ensure that by January 2003, Wisconsin's birthing hospitals will screen a minimum of 90% of newborns for hearing loss prior to discharge.
• Ensure a continuum of community-based and family-centered services for children with hearing loss.
• Provide professional, parent, and public education about newborn hearing screening.
• Develop a statewide data and tracking system for universal newborn hearing screening.

E. Methodology: The WSB program will provide technical assistance to local agencies, hospitals and individuals to help create a seamless system for children and families identified with hearing loss. Initially, ten pilot hospitals will provide ongoing feedback and input into proposed project activities. The WSB program will work to provide information and materials to relevant organizations, and will study and implement a data collection and tracking system. The UNHS Implementation Work Group - a broad array of deaf and hard of hearing support organizations, early intervention agencies, hospital, audiology organizations, and families - will participate in an ongoing review of the project activities throughout its duration.

F. Evaluation: Each Project goal will be evaluated through the rubric of the national core outcomes for measuring success as stated in "National Agenda for CSHCN: Measuring Success." The WSB program will craft data and evaluation systems to provide quantitative and qualitative information for evaluation. The numbers of hospitals screening, the numbers of children screened for hearing and the numbers of children referred to audiology and Birth to 3 Programs will be tracked. Pilot hospitals will be asked to share their newborn hearing screening experiences. Families will be asked to complete satisfaction surveys, and professionals from across disciplines will be surveyed to determine their level of hearing services and system development.

Test Annotation

Wisconsin Sound Beginnings will assess the status of newborn hearing screening in the State, ensure that 90% of the State's newborns are screened, and ensure a continuum of community-based and family-centered services for children identified with hearing loss. The Project will also provide professional, public and parent education, and develop a statewide system of data and tracking for hearing screening and follow up. Through the grant, technical assistance will be provided to organizations providing services to children and families, materials will be produced and disseminated to professionals and consumers, and data will be collected. The Project will be evaluated through a combination of quantitative and qualitative reporting mechanisms.

Key Words

Access to Health Care, Audiology, Culturally-Competent, Deaf, Early Intervention, Family-Centered, Hard of Hearing, Hearing Impairment, Medical Home, Special Health Care Needs, Universal Newborn Hearing Screening.

ABBREVIATIONS USED IN THIS PROPOSAL
AAP - AMERICAN ACADEMY OF PEDIATRICS
AUP- AFFILIATED UNIVERSITY PROGRAM
BDD - BUREAU FOR DEVELOPMENTAL DISABILITIES
BDHH - BUREAU FOR DEAF AND HARD OF HEARING
BDOMP - BIRTH DEFECTS OUTCOME MONITORING PROGRAM
BFCH - BUREAU OF FAMILY AND COMMUNITY HEALTH
CDC - CENTERS FOR DISEASE CONTROL
CSHCN - CHILDREN WITH SPECIAL HEALTH CARE NEEDS
DHCF - DIVISION OF HEALTH CARE FINANCING
CHFS - DEPARTMENT OF HEALTH AND FAMILY SERVICES
DHH - DEAF AND HARD OF HEARING
DPH - DIVISION OF PUBLIC HEALTH
DPH - DEPARTMENT OF PUBLIC INSTRUCTION
DSL - DIVISION FOR SUPPORTIVE LIVING
FTE - FULL TIME EQUIVALENCY
HMO - HEALTH MAINTENANCE ORGANIZATION
IDEA - INDIVIDUALS WITH DISABILITIES EDUCATION ACT
LPH - LOCAL PUBLIC HEALTH DEPARTMENT
MCH - MATERNAL AND CHILD HEALTH
MCHB - MATERNAL AND CHILD HEALTH BUREAU
MCW - MEDICAL COLLEGE OF WISCONSIN
MOU - MEMORANDUM OF UNDERSTANDING
NCHAM - NATIONAL CENTER FOR HEARING ASSESSMENT & MANAGEMENT
NICU - NEONATAL INTENSIVE CARE UNIT
PC - PROJECT COORDINATOR
PC LOG - PERINATAL CARE LOGBOOK
PCP - PRIMARY CARE PROVIDER
PHN - PUBLIC HEALTH NURSE
RC - REGIONAL COORDINATOR (BDHH)
SCHIP - STATE CHILDREN'S INSURANCE PROGRAM
SPRANS - SPECIAL PROJECTS OF REGIONAL AND NATIONAL SIGNIFICANCE
UNHS - UNIVERSAL NEWBORN HEARING SCREENING
WAPC- WISCONSIN ASSOCIATION FOR PERINATAL CARE
WHA - WISCONSIN HEALTH & HOSPITAL ASSOCIATION
WIC - WOMEN INFANTS CHILDREN PROGRAM
WPDP - WISCONSIN PERSONNEL DEVELOPMENT PROJECT
WSB - WISCONSIN SOUND BEGINNINGS
WSHA - WISCONSIN SPEECH, LANGUAGE AND HEARING ASSOCIATION

PROJECT NARRATIVE

9.1 Project Purpose

This application is submitted by the Wisconsin Department of Health and Family Services (DHFS), Division of Public Health (DPH) in response to the CFDA # 93.110 Z Z -Integrated Services for Children with Special Health Cure Needs Priority: Universal Newborn Hearing Screening. Wisconsin is applying for a planning grant in year one with activities to move into full implementation by year four (4) of the grant cycle. This application supports the promotion of universal newborn hearing screening (UNHS) into an integrated service delivery system in Wisconsin.

The purpose of the Wisconsin Sound Beginnings (WSB) Program is to provide comprehensive, coordinated newborn hearing screening among Wisconsin's birthing hospitals and develop and implement family-centered, culturally-competent and community-based follow-up services to Wisconsin's children and their families. All of the goals listed below are applicable starting with the first year of the grant and continue through the fourth year of the grant cycle.

• Goal 1 Assess the statewide status of UNHS and follow-up programs in Wisconsin.
• Goal 2 Ensure that by January 2003, Wisconsin's birthing hospitals will screen a minimum of 90% of newborns for hearing loss prior to discharge.
• Goal 3 Ensure a continuum of community-based and family-centered services for children with hearing loss.
• Goal 4 Provide professional, parent, and public education about newborn hearing screening.
• Goal 5 Develop a statewide data and tracking system for universal newborn hearing screening and follow-up.

Through these activities, the State of Wisconsin Children with Special Health Care Needs (CSHCN) Program. Family Health Section (FHS), Bureau of Family and Community Health (BFCH) will support the Maternal and Child Health Program (MCH) goals for successful statewide implementation of a quality, sustainable universal newborn hearing screening program (UNHS).

9.1.1 Magnitude of Problem

Significant hearing loss is one of the most common birth defects occurring in three children per 1000 newborns or approximately 200 babies per year in Wisconsin. Undetected hearing loss impedes speech, language, and cognitive development. Recent research shows that children, whose hearing losses were identified by six months of age, had significantly better language skills than those identified later. However, reliance on physician or parental recognition of hearing loss during an infant's first year has not been successful. Screening with high-risk guidelines alone results in identifying only 50% of newborns with significant hearing loss. The average age of detection is 14 months nationwide (American Academy of Pediatrics, February 1999).

Technological improvements in screening equipment now makes it feasible, efficient, and cost-effective for newborn hearing screening to be done by nurses or other trained persons at birthing hospitals prior to discharge. UNHS has been recommended by the National Institutes of Health, the Joint Committee on Infant Hearing, the American Academy of Pediatrics and other relevant professional organizations.

In October 1999, the Wisconsin Legislature passed Act 9 S.253.115 Newborn Hearing Screening Programs requiring the DHFS to collect information from each birthing hospital regarding the availability of UNHS at their facility. If by August 5, 2003 fewer than 88% of newborns statewide are not being screened for hearing loss. each of the 107 birthing hospitals in the state will be required to implement UNHS by January 1, 2004. Complete statute language is found in Appendix I. This grant's timetable corresponds with Wisconsin's recently enacted legislation.

The WSB Program will follow the American Academy of Pediatrics' (AAP) February 1999 position statement on UNHS by incorporating the five essential elements to an effective UNHS program: 1) initial screening 2) tracking and follow-up 3) identification 4) intervention, and 5) evaluation. In addition. WSB Program recognizes that the child's primary care provider and the child's parents, working in partnership, make up the child's "medical home"; an essential role in each of these elements.

9.1.2 Anticipated Benefit

Overall at the end of the fourth year of the WSB Program, the anticipated outcomes will be:

• 90% of newborns will receive hearing screenings.
• Newborns with significant hearing loss will be diagnosed no later then three months of age.
• Deaf or hard of hearing infants will be referred to Birth to 3 early intervention programs and their parents will be referred to family support resources as soon as the diagnosis is made.
• A system will be in place that effectively tracks and follows use of services and facilities by children and their families and is potentially compatible with the CDC National UNHS database.
• Parents will report satisfaction with the ease of access and quality of service available for their families and their deaf or hard of hearing infants and children.
• Parents, the health care community and the general public will know the benefits of UNHS and understand the need for timely referrals and interventions.

9.2 Organizational Experience and Capacity

The Wisconsin Sound Beginnings Program will be situated in the CSHCN Unit located in the FHS, BFCH, DPH, DHFS and will work in close collaboration with the Birth to 3 Program located in the Department's Bureau of Developmental Disabilities Services (BDDS) within the Division ofSupportive Living (DSL). The BFCH, FHS administers the Title V MCH/CSHCN Block Grant for Wisconsin.

The Family Health Section awards statewide and regional projects to address important maternal and child health issues and system development such as perinatal, children's health, children with special health care needs, and genetic counseling services. Beginning January 2000, the Wisconsin Association of Perinatal Care (WAPC) has received a 12-month Title V grant for $80,000 to provide:

• A follow-up to the 1998 survey on the status of UNHS implementation in Wisconsin
• Support four meetings of UNHS Implementation Work Group. Membership is described in Appendix II. The first meeting is scheduled for January 26, 2000.
• Subcontract with audiologists and nurses with hospital -based expertise in UNHS to provide technical assistance to hospitals about implementing UNHS. Hospitals must agree to report data to future statewide UNHS databases. These consultants will also work with outreach educators in each of the 14 perinatal centers (Appendix III) using a quasi train-the-trainers model based in part on the National Center for Hearing Assessment and Management UNHS "Implementation Guidelines".
• A subcontract with data experts to design a statewide electronic database for UNHS follow-up and tracking.
• Provision of at least one UNHS technical assistance/training presentation in each of the seven WAPC regions.
• Distribution of three (3) UNHS updated newsletters to Wisconsin primary care and neonatal providers and other interested parties.

The WSB Program would enhance these limited activities that have just begun with WAPC, in conjunction with the CSHCN Program. In addition, the grant funds would make it possible to hire a full time project director who can devote the time necessary to develop a statewide UNHS system.

9.2.1 Relevant Initiatives

The BFCH is currently involved in several efforts that will support the implementation of UNHS statewide.

9.2.1.1 Regionalization of the CSHCN Program

The CSHCN Program awarded over SI.37 million to fund five Regional CSHCN Centers located in each of the DPH regions to provide information, referral. and follow-up services. parent-to-parent support, and service coordination to families. This new program grew out of a needs assessment suggesting that services to CSHCN would be improved by a regionally based system. The Regional CSHCN Centers will provide service coordination for children and their families, parent to parent linkage, information, referral and follow-up services, and education, training, and technical assistance to families and community service providers. Two of the centers are located in pediatric tertiary facilities with easy access to experts in hearing diagnosis and treatment. A listing of the Centers is found in Appendix IV.

Each regional center will employ at a minimum one full time project director and a .5 FTE parent of a child with special health care needs. The five Regional "Parent Liaisons " will identify a CSHCN parent contact in each county. These parents will work together to establish or enhance local parent to parent networks in each county across the region. As part of the UNHS and follow-up, the Regional CSHCN Centers will cooperate with the Bureau for Deaf and Hard of Hearing (BDHH), DSL, DHFS, and county Birth to 3 programs.

9.2.1.2 Expansion of CSHCN/Birth to 3 Hotline

Beginning January 2000, through a collaborative effort, BFCH and BDDS (which houses Wisconsin's Birth to 3 Program) have contributed additional Title V and IDEA Part C funding to enhance the First Step Hotline. The First Step Hotline is Wisconsin's statewide computerized information and referral service dedicated to helping families and professionals find services for children birth to six years old with special needs; the service is free and confidential. By the end of the year a web site will also be developed. A separate call tracking and follow-up system will exist for each program. First Step and the Regional CSHCN Centers will have a reciprocal information linkage system and will share web site development, coordination and management. In addition, a resource knowledgeable parent with a child with special health care needs will answer calls Monday through Friday 8:00 a.m. - 4:00 p.m. Families who call First Step may receive "light touch" information or may be referred to a Regional CSHCN Center. Overall, First Step will be answered 24 hours a day, seven (7) days a week.

9.2.1.3 Other Relevant Initiatives

Several other initiatives that impact children with special health care needs include the restructuring and expansion of the Birth Defects Surveillance System and a recently received planning grant to support the promotion of early identification of CSHCN through State Newborn Screening efforts. Currently Wisconsin birth defects legislation requires only physicians to report to the Birth Defects Outcome Monitoring Program (BDOMP). Proposed legislation would expand reporting requirements to others including hospitals. If passed, this legislative change would enhance the ability to collect information related to hearing.

9.3 Administration and Organization

9.3.1 Organization Structure of Lead Agency

The BFCH consists of three sections: the Family Health Section that contains the Maternal and Child Health Unit and the Children with Special Health Care Needs Unit; the Nutrition Section that administers the State's WIC (Women, Infants and Children Nutrition) Program and the WIC Vendor Section. (See Appendix V for the organizational chart). The mission of the Wisconsin MCH Program is to promote the health and well being of all children including CSHCN, mothers, families and communities by assuring that an organized system exists in order to assist them to realize their full potential as responsible and productive persons.

There are 53.0 authorized MCH FTEs. The Title V MCH Block Grant is authorized to fund 49.1FTEs. The CSHCN Unit currently has 9.80 FTEs, of which 2 positions are vacant. The CSHCN Medical Director (Sharon Fleischfresser) provides direction to the CSHCN Program as it shifts to a population and system based model. Her position is located in the Family Health Section. The CSHCN Unit Supervisor and the MCH unit supervisor report directly to the Family Health Section Chief who serves as the Title V MCH and CSHCN Director. The Section Chief reports directly to the Bureau Director and closely consults with the Chief Medical Officer. The CSHCN Program staff includes: 1.0 FTE Unit Supervisor assigned to this project (Peggy Helm-Quest), three 1.0 FTE Public Health Nurses, one assigned to this project (Ann-Marie Winecke), one 1.0 FTE Parent Consultant assigned to this project, one 1.0 FTE health educator, one 1.0.FTE program assistant (Diane Sewell), and one 1.0 Research Analyst 6. Another 1.0 FTE staff is assigned to the CSHCN Program, but is organizationally placed in the Office of Operations. Future staffing plans for the CSHCN include hiring an epidemiologist, and CSHCN nutrition specialist located in the Nutrition Section. In addition, a Newborn Screening Consultant and a Genetics Consultant are also available for consultation.

The WSB Program will be administered by the DPH, BFCH, FHS, CSHCN Program and performed in close collaboration with the Birth to 3 Program located in the Department's Bureau of Developmental Disabilities Services (BDDS) within the Division of Supportive Living. The Principal Investigator is Dr. Sharon Fleischfresser, CSHCN Medical Director. The WBS Program Coordinator will be an employee of WAPC, but physically located within the CSHCN Program and will report to Peggy Helm-Quest, CSHCN Unit Supervisor. Ann Conway is the WAPC Program Director. She is the lead person related to the UNHS and contact for the Wisconsin CSHCN Program's grant to WAPC. She is instrumental in organizing a number of hearing screening activities including the statewide regional forums conducted in 1999 and will serve as the facilitator of the UNHS Implementation Work Group beginning in January 2000.

The CSHCN Program will have an interagency agreement with the Division of Supportive Living (DSL). DSL will amend an existing contract with the Wisconsin Personnel Development Project to assess training needs, plan and provide training and on going technical assistance to Wisconsin's Birth to 3 providers on interventions for deaf and hard of hearing infants and toddlers. WPDP is a personnel training grant funded with IDEA - Part C moneys. They will work closely with the WSB Program Coordinator, state audiologists, and the BDHH to update Birth to 3 providers on family support resources, deaf cultural issues, and communication and amplification options. Linda Tuchman is the Waisman Center's Early Intervention Program Director including the WPDP and is part of the management team for the Southern Region CSHCN Center. She will serve as the contact person for the WPDP contract. (See Appendix VI, Figure 1 and Figure 2 for a schematic of the grant proposed organizational structure.)

9.4 Available Resources

The CSHCN staff represents a broad array of experienced health care professionals who will be involved in this program as previously mentioned.

9.4.1 Staffing

Staffing has been described in detail in the Section V.

9.4.2 Facilities

Most project activities will be carried out in the smoke free, handicapped accessible offices of BFCH and WAPC located in Madison, Wisconsin. In addition, technical assistance and training activities will take place in hospitals throughout Wisconsin.

9.4.3 Regional CSHCN Centers as Resources

The Regional CSHCN Centers will also develop working relationships with community providers so that families of CSHCN have access to medical services, accurate information and support. Each center will employ (at a minimum) one full time project director and a .5 FTE parent liaison. Establishing these positions will benefit our efforts in developing a statewide infrastructure for children with special health care needs including those identified with a hearing loss.

9.4.4 Collaborating Partners

Wisconsin Association for Perinatal Care (WAPC)

Beginning in January 2000, WAPC will start the activities for the UNHS planning.

Wisconsin Health and Hospital Association (WHA)

WHA will provide support to the UNHS Implementation Work Group and January 2000 hospital survey.

Wisconsin Speech-Language-Hearing Association (WSHA)

WSHA will provide representatives to the UNHS Implementation Work Group. They are mobilizing to meet their members' UNHS related training needs by conducting a Grand Rounds on January 29, 2000 in Milwaukee entitled "Newborn Infant Hearing Assessment and Training, Are You Ready?" The WSB Program Coordinator will collaborate closely with WSHA.

Wisconsin Bureau of Deaf and Hard of Hearing (BDHH)

BDHH has a network of six Regional Coordinators (RC), one in each DHFS region and Milwaukee County. These coordinators provide information on technology and communication options, support to parents of deaf or hard of hearing children including linking them to other parents, deaf advocacy and support groups.

Department of Public Instruction (DPI)

DPI has a deaf and hard of hearing education consultant who will be a member of the UNHS Implementation Work Group. Six years ago, DPI, BDHH and the Birth to 3 Program organized a Birth to Six Deaf/Hard of Hearing Task Force that has worked since that time to implement UNHS in Wisconsin. The CSHCN Medical Director is a member of this task force. DPI's deaf education outreach consultant coordinates the Deaf Mentor Project that matches deaf or hard of hearing children with a deaf or hard of hearing adult mentor. The outreach consultant who is a deaf individual has and will continue to provide expertise to WPDP. He is also a member of the UNHS Implementation Work Group.

Birth to 3 Program

In the face of an anticipated increase in numbers of infants and toddlers newly diagnosed with hearing loss, there will be many challenges to Wisconsin's Birth to 3 program. They will play a pivotal role in the work to develop a UNHS tracking and follow-up system.

Local Health Departments

Local Health Departments will play a key role in the statewide implementation of UNHS by:

• Serving on local hospital UNHS planning groups.
• Providing community backup assurance when infants miss outpatient re-screening appointments or audiologic diagnostic appointments.
• Helping families establish a medical home if they have none.
• Contacting the family after their infant has been diagnosed with a hearing loss to offer assistance with referrals to DHH parent support groups, sources of financial assistance and Birth to 3.
• Follow-up on infants with "high risk registry" characteristics who passed the newborn hearing screening by reminding their parents to have their hearing tested every six months through age 3.

9.5 Identification of the Target Population and Service Availability

The target population of Wisconsin Sound Beginnings Program is all newborns born in the State of Wisconsin. In 1997 (most recent data available), according to the Office of Health Care Information, there were 66,490 live births in Wisconsin. Of this number, an estimated 200 babies are born with significant hearing loss. However, this initiative also targets parents of newborns, neonatal service providers who screen for hearing loss, organizations that provide support and information to parents of deaf and hard of hearing children, primary care providers, audiologists, and IDEA Part C and B providers.

In 1998, researchers from the Medical College of Wisconsin (MCW) and the Wisconsin Health and Hospital Association (WHA) conducted a survey of 107 birthing hospitals in the state. Survey results found that approximately 10 percent of infants born in 1997 had undergone hearing screening (See Appendix VII). Only two hospitals in Wisconsin had implemented UNHS: St. Mary's Hospital in Milwaukee and St. Luke's Hospital in Racine. By November 1999, fifteen birthing hospitals are thought to have either begun universal screening or planned to in the near future. This would increase the number of Wisconsin infants screened to approximately 25%. However, accurate baseline information is currently not available.

Of particular interest is St. Mary's Hospital in Milwaukee. In 1996, UNHS program hospital staff followed a detailed model protocol that requires a re-screen in the hospital if the infant does not pass the initial screening, and another screening at the hospital about two weeks after discharge. If the infant still does not pass, the infant is referred for audiological assessment. Evaluation data from that program for October 1996 to October 1998 indicate that of the 4,442 infants screened, 1.5 percent required outpatient re-screening. Of those infants, 20 were referred for audiologic evaluation, with 12 having documented hearing loss. Such a protocol could potentially serve as a methodological and evaluative template for our proposed statewide efforts to identify the target population.

9.6 Needs Assessment

The assessment to support the need for WSB Program's goals and objectives is based on prior work of the applicant and national Findings. As noted in the MCHB application guidance, UNHS is a cost-effective method of identifying newborns with hearing impairment. In the recent past, the approach to hearing screening was to screen those infants who were at risk for hearing loss. However, studies have shown that only about half of all children with congenital hearing loss demonstrated any of the risk factors.

In November 1998, the Wisconsin MCH/CSHCN Program. WAPC, BDHH. WSHA, Wisconsin Chapter AAP, and Wisconsin's State Medical Society convened a meeting of providers, parents and advocates interested in implementing statewide UNHS. The group identified four strategies to promote a successful UNHS program in Wisconsin. The four strategies were: (1) provider education, (2) design and implementation of the program, (3) tracking and follow-up and (4) data collection, evaluation and management.

In early 1999, these organizations were joined by the WHA, the Birth to 3 Program, DPI, parents, additional personnel from the DPH, and representatives from local health departments, to plan a series of community educational forums on implementing UNHS.

Known as the "Ad Hoc UNHS " group, (Appendix VIII), they developed a curriculum for the forums based on the strategies identified at the November 1998 meeting, the National Center for Hearing Assessment and Management (NCHAM) implementation guide, and model protocol based on the experience of St. Mary's Hospital, Milwaukee (Appendix IX). The overall goal was to help participants understand the continuum of care, from screening to intervention and follow-up.

The forums occurred at 8 sites statewide during 1999 and included a multidisciplinary group of presenters covering topics such as: scientific evidence for UNHS; criteria for selecting screening equipment; the model protocol for implementing a UNHS program: and parental perspectives. Approximately 300 people participated in the forums.

There are many challenges facing Wisconsin in developing its UNHS data and tracking system. In 1999, the WAPC made a change to PC- LOG, the data system that electronically transfers birth certificate data to the DHFS, by adding a Field for birthing hospitals to use if they have implemented UNHS. However, this was only a stopgap attempt to help hospitals capture UNHS data using the existing system. DHFS will replace PC-LOG with an Oracle based reporting system within the next three years. Currently, birthing hospitals are required to collect and send data to DHFS, but it does not include UNHS data and there is no central location to aggregate and evaluate the data. Individual hospitals can use the data for internal monitoring, but to initiate, sustain and evaluate a quality statewide UNHS program, there must be a system in place to collect data on the effectiveness of screening newborns and the short and long-term impacts of earlier diagnosis and intervention.

The WSB Program would focus its activity to address these gaps in data collection.

9.7 Collaboration and Coordination

As is demonstrated throughout this application, WSB Program builds on collaborative networks already developed around the issue of UNHS. The collaborative network has been described in Section 9.4.4. The CSHCN Program will continue to collaborate closely with representatives from these organizations, agencies and individuals.

Appendix X includes letters of support for the project from interested parties involved in the implementation of UNHS in Wisconsin.

9.8 Goals and Objectives

In most cases, each goal and objective is discussed along with its methodology.

9.8.1 Goal 1

To assess the statewide status of newborn hearing screening and follow-up programs in Wisconsin.

9.8.1.1 Objective 1 By 2000, expand the UNHS implementation Work Group to increase participation and diversification of parents and deaf and hard of hearing individuals.

The CSHCN Program will work with WAPC's current activities to increase participation and diversification of parents and deaf individuals for the newly created UNHS Implementation Work Group. The CSHCN Program is committed to the five guiding principles supporting all MCH programs and services in the state: 1) family-centered care, 2) community-wide leadership, 3) health promotion and resiliency, 4) needs assessment and outreach. 5) cultural competence.

Families with a deaf or hard of hearing child will participate in the UNHS Implementation Work Group and other related efforts. The CSHCN Parent Consultant will also serve on this Work Group. Parent advice and assistance is essential in the development of sensitive and understandable UNHS informational materials, consent and documentation forms, as well as family-centered referral protocols and resources, and family satisfaction and impact evaluation tools. Parents will be paid stipends, along with their expenses, for their participation in the UNHS Implementation Work Group and other related activities.

The UNHS Implementation Work Group will also include representatives from the DHFS, Division of Health Care Financing (DHCF). This division administers the state Medicaid Program including Wisconsin's Medicaid expansion (Healthy Start) as well as BadgerCare, the State's SCHIP Program (Title XXI). Third party reimbursement for UNHS related expenses affects the child and family from the screening itself, to audiologic evaluation, to early intervention services. Wisconsin Medicaid is a key source of providing access to health care in the State. Approximately 34% of all Wisconsin births are paid for by Medicaid. Representation on the Work Group from Medicaid and other public and private insurers will ensure that plans for program implementation and follow-up will address the need for sustainable payment source for UNHS activities.

9.8.1.2 Objective 2 By October 2000, survey all Wisconsin audiologists and county Birth to 3 Programs to assess their present level of participation in UNHS related activities and relevant training and technical assistance needs.

As discussed earlier, in 1998 the Medical College of Wisconsin (MCW) and the Wisconsin Health and Hospital Association (WHA) conducted a survey of the 107 birthing hospitals newborn hearing screening practices. In January 2000, WAPC, in conjunction with WHA and MCW, will conduct a follow-up survey to provide accurate baseline information for 1998 and 1999 (Appendix XI). Issues related to follow-up, referral. hospital data keeping, and hospital technical assistance will be addressed. This survey will be modeled after those used in other states such as Colorado and by NCHAM. The results will provide an excellent look into the current status of UNHS in Wisconsin.

However, hospitals are but one component of the UNHS process. There is a significant need to survey professionals who work with families that have infants and children with a significant hearing loss, to ascertain their level of understanding of available resources and intervention strategies for deaf or hard of hearing children and their families. In collaboration with WSHA, the WSB Program will survey audiologists across the state. Audiologists will be asked questions about: the sources of referrals to evaluate infants with hearing loss; how they track incoming referrals; if they refer children with established hearing loss to Birth to 3 providers and family support resources; if they provide feedback regarding diagnoses to referring birth hospital; if they provide feedback regarding diagnosis to the primary care provider; and what training needs they have.

Future plans for the WSB Program include surveying Birth to 3 programs in Wisconsin. Local Birth to 3 programs, which are administered by Wisconsin counties, will be asked to report their knowledge of referral sources to their program. In addition, they will share the linkages that they may have with primary care providers; local public health departments; support groups for parents of deaf or hard of hearing children; birthing hospitals; audiologists; deaf mentor program: experience transitioning children to local school district as they turn three; and training and technical assistance needed to better serve this population.

9.8.2 Goal 2

By January 2003, Wisconsin hospitals will screen a minimum of 90% of all newborns for

hearing loss prior to discharge,

9.8.2.1 Objective 3 By December 2000, the WSB Program Coordinator will develop a UNHS contact at each of the 107 birthing hospitals in the state.

In year one, the WSB Program Coordinator with the help of WAPC Program Director and the WAPC's outreach educators at the 14 Perinatal centers will identify UNHS contacts in each Wisconsin birthing hospital. Contact will occur by phone, letter, and electronic list serve. The WSB Program Coordinator will work with nursing staff, families, primary care providers, audiologists, and local health departments to plan and implement UNHS in their hospital. The WSB Program Coordinator will provide model protocol information, public awareness resources, and the technical assistance to help the hospital to achieve quality outcomes - screening before discharge from birth hospital, diagnosis by three months, and intervention by six months. Materials developed and/or reviewed by the UNHS Implementation Work Group and WSB Program Coordinator will be shared with the hospital contacts.

9.8.2.2 Objective 4 By March 2001, provide comprehensive technical assistance to 10 UNHS pilot sites to achieve 50% of UNHS.

In year one, two hospitals in each DPH region will pilot UNHS that represent urban and rural Wisconsin and total number of births. The WSB Program Coordinator in collaboration with the WAPC contracted technical assistance providers will contact pilot hospitals at least quarterly to assure ongoing technical assistance to their implementation process including planning, training, policy procedure and protocol, and data and tracking system development. The WSB Program Coordinator will share the experiences with the UNHS Implementation Work Group. The relationship built with these hospitals will enable the WSB Program Coordinator to Field test implementation guidelines and technical assistance strategies, data collection and materials collected and/or developed by the project and/or UNHS Implementation Work Group in a variety of hospitals (small and large; rural and urban). Each year additional hospitals will be added to achieve 90% by 2003.

9.8.2.3 Objective 5 By 2001. conduct a follow-up survey to the remaining birthing hospitals.

In year 2 (2001) of the project, the survey detailed in Objective 4 will be repeated allowing the project to identify hospitals not yet providing UNHS. Using the results of this 2001 follow-up survey, the WSB Program Coordinator will target technical assistance to hospitals that have not initiated UNHS and will plan with that hospital's UNHS contact to initiate a UNHS implementation plan. The WSB Program Coordinator will share material developed and/or reviewed by the UNHS Implementation Work Group related to informed consent procedures: screening procedures and personnel; and documenting and reporting screening results.

9.8.3 Goal 3

To ensure a continuum of community based and family centered services for children with hearing loss.

As hospitals in Wisconsin start implementing UNHS, it is necessary to create a coordinated, statewide system. This system should ensure newborns that fail their screens are referred to audiologists for diagnostic evaluation before three months of age and infants who are diagnosed with hearing loss are referred promptly to the Birth to 3 Program to initiate interventions prior to six months of age. The "Ad Hoc UNHS" group developed a model protocol that identified what needs to occur. The WSB Program Coordinator working with the UNHS Implementation Work Group will utilize the developed model to assist hospitals in communicating with primary care providers, making referrals to audiologists. and for diagnosing and making referrals to LHD and BDHH.

9.8.3.1 Objective 6 By March 2001. develop a protocol that will facilitate linkages between hospitals, primary care providers (medical home), and public health agencies.

The WSB Program Coordinator working with the WAPC and WPDP contracted technical expertise, will develop model protocols and communication tools to use with primary care providers and local public health departments. Some examples include:

• Written guidelines for communicating with parents and PCP when baby is "referred" for audiologic evaluation.
• Sending PCP copies of all reports the hospital sends or receives related to the baby's hearing status and services received.
• Drafting written agreements with Birth to 3 Program Coordinators about eligibility status of infants originally screened at their hospital.
• Templates for PHN referrals. Sending PCPs and LHDs aggregate annual UNHS referral and tracking statistics local hospitals collect.
• Inviting PCPs and LHDs to all programs and training related to UNHS. Written agreements with LHDs to assure timely follow-up contact with families when rescreening and diagnostic appointments are missed.
• Development of models for written referrals and tracking procedures.

9.8.3.2 Objective 7 By 2001, establish a network of pediatric audiologists with an interest and expertise in diagnosing and providing family-centered management of hearing loss in infants and children.

Working with the WSHA, the WBS Program Coordinator will develop a list of pediatric audiologists who are interested in this activity.

9.8.3.3 Objective 8 By 2001, develop a uniform referral mechanism so that a child diagnosed with a hearing loss is referred to early intervention services by no later than 6 months of age.

This mechanism will be linked to services and assure that there is timely communication back to the medical home and the birthing hospitals serving as UNHS pilots. Issues related to "border births" will be explored. For example, the CSHCN Program and their UNHS contact in Michigan have agreed to reciprocate referrals and follow-up on Michigan babies born in Wisconsin.

9.8.3.4 Objective 9 During 2001, establish a referral network to assure family's awareness of family support organizations.

The WSB Program Coordinator in collaboration with BDHH will provide birthing hospitals, primary care providers, audiologists, and Birth to 3 Program Programs, with information on deaf and hard of hearing for family support organizations. The BDHH Regional Coordinators will be included and encouraged to work with primary care providers and audiologists. WPDP with assistance of BDHH outreach will have deaf and hard of hearing support organizations available for Birth to 3 training and conferences, and contracted deaf and hard of hearing experts will speak to early interventionists about the need to connect children early with organizations. These resources will also be available through First Step and its web site. Future plans will include developing and implementing a family satisfaction survey.

9.8.4 Goal 4

To provide professional, parent, and public education about UNHS.

Informing families, professionals and the public about UNHS will be a primary responsibility of the WSB Program Coordinator working with the CSHCN staff, UNHS Implementation Work Group, and WAPC. All materials will be family-centered and culturally- competent to enable broad stakeholder participation in the UNHS programs planning, implementation and evaluation.

9.8.4.1 Objective 10 By 2001, WSB Program Coordinator will catalog existing public information about UNHS.

The information will be made available to WAPC's activities as they conduct UNHS technical assistance and training presentations in the seven perinatal regions and in the development of the UNHS newsletters targeted for primary care and neonatal providers.

9.8.4.2 Objective 11 By 2003, the WSB Program Coordinator in conjunction with the regional CSHCN Centers will develop educational materials where gaps exist for professionals, parents and the general public.

The materials should highlight the importance of diagnosis by three months of age and referral to Birth to 3 program and family support resources by 6 months of age. The WSB Program Coordinator will regularly communicate with WSHA and be appropriately geared for the designated target audience such as professionals, families or the general public.

9.8.4.3 Objective 12 By 2001, the WSB Program Coordinator will -work with Birth to 3 and WPDP to provide several trainings on deaf and hard of hearing intervention.

As more infants and toddlers begin to enter Birth to 3 Programs, these providers will need appropriate training by deaf and hard of hearing educators. This will be facilitated through a subcontract to WPDP. WPDP will provide deaf and hard-of-hearing intervention training at its annual training events. BDHH and DPI deaf education outreach consultant and deaf and heard of hearing education consultant will assist in this effort.

9.8.5 Goal 5

To develop a statewide data and tracking system for universal newborn hearing screening.

As part of the UNHS planning grant to WAPC, $14,000 will be used to conduct a feasibility study for the development of a statewide database for UNHS follow-up and tracking. This feasibility study will examine existing reporting and tracking systems in place such as the birth defects surveillance (BDOMP) and the congenital disorders program (blood newborn screening). The study will review issues related to confidentiality and reporting authority as outlined in statute. Success in developing such a data system will require addressing these issues.

The role of the WSB Program is to enhance the capacity of hospital and public health data systems to collect and track infants diagnosed with significant hearing loss. WAPC and CSHCN staff will work with computer and data experts to develop a plan for a centralized reporting and tracking system that is compatible with other statewide public heath data bases including the WIC/MCH data system that collects information about Title V MCH performance measures and the CDC National UNHS data base.

A comprehensive data collection set would include the number of: annual births; newborn screened prior to discharge: referred for diagnostic evaluation; diagnosed with hearing loss; type of hearing loss; communication by hospital and audiologist to child's medical and local public health nurse; age of diagnoses: date of audiologists referral to Birth to 3 Program: date of child's IFSP; type of service provided by Birth to 3 Program; date of referral to support groups for parents of deaf and hard of hearing children; and date of child discharged from Birth to 3 or referred to local school district IDEA - PART B (age 3-5 program). However, initially the parameters of the WSB Program will be more narrowly focused on the number of infants screened, the number of infants diagnosed with a hearing loss, and the number of infants referred for intervention no later than 6 months of age.

9.8.5.1 Objective 13 By 2003. a mechanism will be in place for hospitals to be able to report the infants screened.

The WSB Program Coordinator will work with WAPC to identify data linkages that currently exist among hospitals, primary care providers and local public health agencies in the initial "hospital birth" stage of the model. If mechanisms do exist, the WSB Program Coordinator will examine the feasibility of incorporating them in the project's broader data systems development. If not, the WSB Program Coordinator will work with WSHA, WAPC, and the UNHS Implementation WorkGroup to ensure ways to report this interaction in a child's service system.

9. 8.5.2 Objective 14 By 2002. audiologists would report infants diagnosed with a hearing loss and document the referral to the Birth to 3 Program.

Suggested information to be collected and reported by audiologists to a UNHS tracking system:

• Report back to referring hospital, LHD and the child's primary care provider the results of the diagnostic evaluation.
• Refer infants diagnosed with significant hearing loss to Birth to 3 and parent support organizations.

The WSB Program Coordinator in collaboration with WSHA and UNHS hospital contacts will fashion models for communication between audiologists, primary care providers, and referring hospitals. The WSB Program Coordinator will work with WSHA and the state level Birth to 3 program to learn what information is currently being shared between diagnosing audiologist and local Birth to 3 program and what if any tracking data is collected by audiologists when they diagnose infants or toddlers with hearing loss, and what difficulties either group foresee in participating in UNHS tracking and follow-up data collection.

9.8.5.3 Objective 15 By 2003, review Wisconsin's UNHS database collaboratively with other key members of the intervention and tracking process to potentially be compatible with the CDC National UNHS data base.

The WSB Program Coordinator will research tracking and follow-up procedures used in other states, especially those states piloting the proposed CDC National UNHS database as well as others that have comprehensive computerized tracking programs. The WSB Program Coordinator will collaborate with WAPC, WSHA, WHA and Birth to 3 to strategize on adapting or devising a similar system in Wisconsin.

9.8.5.4 Objective 16 By 2004, establish follow-up and tracking system to operationalize reporting statewide.

9.9 Required Resources

In order to address the program's goals and objectives, and to carry out specified activities, the program requires $94,939 in direct and indirect costs to support key personnel, contractual technical assistance activities, travel consultation, and other related activities as follows. Detailed information regarding the resources needed is included in the Budget Justification.

Appropriate fiscal control will be exercised by the DPH, DHFS representatives Sharon Fleischfresser MD. MPH, Principle Investigator of the Project and Susan Uttech, MS, CHES, Family Health Section Chief and Title V MCH and CSHCN Director. Accounting procedures will be carried out by the Wisconsin DHFS, based upon accepted accounting procedures and practices. (See Appendix XII for Project Job Descriptions and Appendix XIII for Biographical Sketches of Program staff).

9.10 Project Methodology

Detailed information on this project's methodologies is included in the Project Timeline, Personnel Allocation Table, and in the Goals and Objectives.

9.10.1 Project Activities Time Allocation Table (as follows)

9.10.2 Personnel Allocation Chart (as follows)

PROJECT ACTIVITIES TIME ALLOCATION TABLE
Project Title: Wisconsin Sound Beginnings Program
Project Director: Sharon Fleischfresser, M.D., M.P.H.
Budget Period: 04/1/00 to 03/31/01
State: Wisconsin

Objectives and Approaches (same as Personnel Allocation Chart)	Start Date	Completion Date	Tracking/Evaluation Methods
Objective I Expand Work Group
Recruit diverse parent participation from diverse cultural and demographic representations to participate in implementation Work Group	04-01-00	06-01-00	Document membership.
Recruit health care Financing representatives, public and private, to participate in Implementation Work Group	04-01-00	03-31-01	Document membership.
Objective 2 Survey audiologists
Work with national MCHB UNHS technical assistance center to develop audiology survey materials	04-01-00	10-01-00	Survey tool completed.
Survey audiologists about UNHS practices	10-01-00	12-01-00	Survey administered.
Data review and analysis of audiology survey	11-01-00	12-01-00	Survey analyzed.
Survey Birth to 3 about knowledge and practices	01-01-01	06-01-01	Share findings with UNHS implementation Work Group
Objective 3 Develop a UNHS contact
Identify a UNHS contact at every birthing hospital in the State of WI through a variety of methods, phone, print, electronic.	04-01-00	12-00	Director established and maintained.
Objective 4 Provide TA to 10 pilot hospitals
Contact WHA to discuss model agreements for hospitals to use around UNHS	04-01-00	03-31-01	Summarize findings.
Implementation Work Group will review model agreements	04-01-00	03-31-01	Discussion and recommendations at Implementation work group
Provide sample protocols to hospitals and steps to take for implementing UNHS	04-01-00	03-31-01
Contact each regional pilot hospital quarterly	04-01-00	ongoing	Log contacts and report to Work Group
Objective 5 Conduct follow-up Survey
Conduct survey to hospitals not yet doing UNHS	02-01-01	03-31-02	Surveys completed and analyzed
Objective 6 Develop protocol to facilitate linkages
Work with key players to agree on protocol	04-01-00	03-31-01	Protocol agreed upon
Update UNHS Implementation Work Group	04-01-00	ongoing	Report to Work Group
Objective 7 Establish network of pediatric audiologists
Make necessary contacts to establish a list	04-01-00	03-31-01	Directory maintained and completed
Objective 8 Uniform referral mechanism to early intervention services
Work with Birth to 3 Programs to identify potential changes	04-01-00	03-31-01	Referrals made to early intervention services
Objective 9 Assure family's awareness of family support organization
Provide information to key providers including Regional Coordinators	04-01-00	03-31-01	Summarize plan
Have support organizations speaker present at Birth to 3 meetings	04-01-00	ongoing	Coordinate presentations and analyze training evaluations
Objective 10 Catalog existing public information on UNHS
Gather information materials	04-01-00	03-31-01	Materials catalogues
Categorize and share with UNHS Implementation Work Group	04-01-00	on going	Gaps are identified and education material plan is formulated
Determine Gaps	04-01-00	05-01-01
Objective 11 Develop educational materials
Work with the state's birthing hospitals to plan, design and disseminate appropriate informational media to these hospitals	09-01-00	03-31-01	Provide drafts to Work Group that are targeted appropriately to these three audiences: hospitals, physicians and consumers.
Work with primary care physicians to provide professionally appropriate information in the medium they prefer	09-01-00	03-31-01
Create materials with/for consumers to inform them about UNHS; distribute existing materials	09-01-00	03-31-01
Objective 12 Provide trainings
Work with audiologists to provide information about UNHS in the medium they prefer	10-01-00	03-31-01	Provide drafts to Work Group and WSHA targeted audiologists
Work with early intervention program staff to provide training on hearing impairment issues	2-15-01	ongoing	Monitor and evaluate trainings and report to Work Group
Objective 13 Hospitals report the number of infants screened
Identify data links that exists	03-01-01	ongoing	Monitor data links and analyze available data
Objective 14 Audiologists report infants diagnosed and referred
Establish formal written agreement between audiologists and hospitals	03-31-01	03-31-02	Agreement completed
Objective 15 Review UNHS database
Research tracking and evaluation methods used in other states	04-01-00	12-01-00	Summarize findings
Evaluate national data tools for family satisfaction	05-01-00	08-01-00	Summarize findings
Integrate family satisfaction survey into database	03-31-01	03-31-02	Analyze Survey and incorporate into database
Objective 16 Establish follow-up and tracking system statewide.
Identify barriers	06-01-00	ongoing	Report on barriers to superiors, Work Group.

PERSONNEL ALLOCATION CHART Project Title: Wisconsin Sound Beginnings Program
Project Director: Sharon Fleischfresser, M.D., M.P.H.
Budget Period: 04/1/00 to 03/31/01
State: Wisconsin

Objectives and Approaches (same as Personnel Allocation Chart)	Project Coord.	CSHCN Med Dir.	Unit Superv.	CSHCN Nurse	B-3 Liaison	Parent Liaison	WPDP
Objective 1 Expand Work Group	30	6	1	6	3	15	0
Recruit diverse parent participation from diverse cultural and demographic representations to participate in Implementation Work Group
recruit health care financing representatives, public and private, to participate in Implementation Work Group
Objective 2 Survey audiologists and others	40	4	1	6	10	0	20
Work with national MCHB UNHS techinical assistance center to develop audiology survey materials
Survey audiologists about unhs practices
Survey Birth to 3 about D/HH knowledge and practices
Data review and analysis of audiology survey
Data review and analysis of early intervention survey
Objective 3 Develop a UNHS contact	10	3	1	2	0	0	0
Identify a UNHS contact at every birthing hospital in the State of WI
Objective 4 Provide TA to 10 pilot hospitals	10	2	1	2	0	0	0
contact WHA to discuss model agreements for hospitals to use around UNHS
Implementation Work Group will review model agreements
Provide sample protocols and steps of UNHS implementation
Contact each regional pilot hospital quarterly
Objective 5	15	1	.5	2	0	0	0
Conduct survey to hospitals not yet doing UNHS
Objective 6 Develop protocol to facilitate linkages	8	1	.5	2	0	0	0
Work with key players to agree on protocol
Update UNHS Implementation Work Group
Objective 7 Establish network of pediatric audiologists	8	1	1	0	0	0	10
Make necessary contacts to establish a list
Objective 8 Uniform referral mechanism for early intervention	9	2	0	2	5	0	10
Work with Birth to 3 to identify potential changes
Objective 9 Assure family awareness of support organizations	20	2	1	2	5	5	0
Provide information to key providers such as Regional Coordinators
Have support organization speakers at Birth to 3 meetings
Objective 10 Catalog existing UNHS public information	20	2	0	0	0	0	0
Gather informational materials
Categorize and share with Implementation Work Group
Determine Gaps
Objective 11	20	2	0	0	0	5	0
Work with the state's birthing hospitals to plan, design and disseminate appropriate informational media to hospitals
Work with primary care physicians to provide professionally appropriate information in the medium they prefer
Create materials with/for consumers to inform them about UNHS, distribute existing materials
Objective 12 Provide trainings	5	2	1	0	5	0	40
Work with audiologists to provide UNHS information in the medium they prefer
Work with early intervention program staff to provide training on hearing impairment issues
Objective 13 Hospitals report infants screened	15	2	1	3	0	0	0
Identify data links that exists
Objective 14 Audiologists report infants diagnosed/referred	10	1	0	3	0	0	20
Establish formal written agreement between audiologists and hospitals
Objective 15 Review UNHS database	18	2	1	3	0	12	0
Research tracking and evaluation methods used in other states
Evaluate national data tools for family satisfaction
Integrate family satisfaction tool into database
Objective 16	12	2	1	0	0	0	0
Establish follow-up and tracking system statewide.

 9.11 Evaluation Plan

Each goal will be evaluated through the rubric of the national core outcomes for measuring success as stated in: "National Agenda for CSHCN: Measuring Success." These five outcomes are:

1. All children will be screened early and continuously for special health care needs;
2. All CSHCN will receive regular ongoing comprehensive care within a medical home;
3. All families of CSHCN will have adequate private and/or public insurance to pay for the services they need;
4. Families of CSHCN will participate in decision-making at all levels and will be satisfied with the services they receive; and
5. Services for CSHCN and their families will be organized in ways that families can use them easily.

The WSB Program will craft data and evaluation systems to produce useable quantitative and qualitative information to help "fine-tune" the Wisconsin Sound Beginnings progress.

9.11.1 Goal 1

To assess the statewide status of newborn hearing screening and follow-up programs in Wisconsin. (Addresses outcome 5)

9.11.1.1 Objective 1 By 2000, expand the UNHS implementation WorkGroup to increase participation and diversification of parents and deaf and hard of hearing individuals.

Measure: Parent participation and diversification on the work group will be tracked annually.

9.11.1.2 Objective 2 By October 2000, survey all Wisconsin audiologists and county Birth to 3 Programs to assess their present level of participation in UNHS related activities and relevant training and technical assistance needs.

Measure: Survey results will be presented to the UNHS Implementation Work Group.

9.11.2 Goal 2

By January 2003, Wisconsin hospitals will screen a minimum of 90% of all newborns for hearing loss prior to discharge. (Addresses outcome 1)

9.11.2.1 Objective 3 By December 2000, the WSB Program Coordinator will develop a UNHS contact at each of the 107 birthing hospitals in the state.

Measure: The WSB Program Coordinator will maintain a directory of UNHS birthing hospital contacts.

9.11.2.2 Objective 4 By March 2001, provide comprehensive technical assistance to 10 UNHS pilot sites to achieve 50% of UNHS.

Measure: The WSB Program Coordinator will regularly communicate (at least quarterly) with the pilot hospitals and provide a written progress report to the UNHS Implementation Work Group.

9.11.2.3 Objectives By 2001, conduct a follow-up survey to the remaining birthing hospitals

Measure: Complete survey results.

9.11.3 Goal 3

To ensure a continuum of community based and family centered services for children with hearing loss. (Addresses outcomes 1, 2, 3)

9.11.3.1 Objective 6 By March 2001 develop a protocol that will facilitate linkages between hospitals, primary care providers (medical home), and public health agencies.

Measure: Protocol has been developed and disseminated.

9.11.3.2 Objective 7 By 2001, establish a network of pediatric audiologists with an interest and expertise in diagnosing and providing family centered management of hearing loss in infants and children.

Measure: A directory or listing of interested audiologists is maintained and readily available.

9.11.3.3 Objective 8 By 2001, develop a uniform referral mechanism so that a child diagnosed with a hearing loss is referred to early intervention services by no later than 6 months of age.

Measure: A uniform referral mechanism is in place with the early intervention services and able to document the number of infants that have been referred by no later than six months of age.

9.11.3.4 Objective 9 During 2001, establish a referral network to assure family's awareness of family support organizations..

Measure: A referral network is in place. Family satisfaction surveys are conducted and analyzed.

9.11.4 Goal 4

To provide professional, parent, and public education about UNHS. (Addresses outcome 4,5)

9.11.4.1 Objective 10 By 2001. WSB Program Coordinator will catalog existing public information about UNHS.

Measure: A comprehensive catalog is completed.

9.11.4.2 Objective II By 2003, the WSB Program Coordinator in conjunction with the Regional CSHCN Centers will develop educational materials where gaps exist for professionals, parents and the general public.

Measure: Needed educational materials are developed and distributed utilizing the allotted resources. A plan is developed that identifies a timeframe for the production of additional educational materials.

9.11.4.3 Objective 12 By 200!. work with Birth to 3 and WPDP to provide several trainings on deaf and hard of hearing intervention.

Measure: Trainings will be evaluated and summarized.

9.11.5 Goal 5

Develop a statewide data and tracking system for universal newborn hearing screening. (Addresses all outcomes.)

9.11.5.1 Objective 13 By 2003, a mechanism will be in place for hospitals to be able to report

the number of infants screened.

Measure: Able to document the number of infants screened.

9.11.5.2 Objective 14 By 2002, audiologists would report infants diagnosed with a hearing loss and document the referral to the Birth to 3 Program.

Measure: Able to document the referral to the Birth to 3 Program.

9.11.5.3 Objective 15 By 2001. review Wisconsin's UNHS database collaboratively with other key members of the intervention and tracking process to potentially be compatible with the CDC National UNHS date base.

Measure: A summary report of the database review will be completed with recommended next steps.

9.11.5.4 Objective 16 By 2004, establish follow-up and tracking system to operationalize reporting statewide.

Measure: A statewide tracking system will be in place.