Centers for Disease Control & Prevention EHDI Grants (2000):
Minnesota

GRANT ABSTRACT
• Grant Narrative

GRANT NARRATIVE

1. Understanding the Problem and Current Status

Since before l996, Minnesota has been documenting the need for universal newborn hearing screening (UNHS) programs. The Minnesota Department of Health (MDH) identified UNHS as an important core public health function in the Title V MCH block grant in l997. A survey of Minnesota audiologists confirmed that the average age of identification of hearing loss in Minnesota was over 2 years of age with intervention delayed even beyond. A voluntary workgroup brought their concerns to the attention of MDH and the legislature. The 1997 Legislature directed the MDH to develop a plan for voluntary implementation of UNHS.

The 1998 plan, developed by a multi-disciplinary interagency workgroup, identified eight goals for UNHS and early hearing detection and intervention (EHDI), including the development of a systematic tracking and follow-up surveillance system. (See Appendix A, Voluntary Implementation Plan for UNHS). Needs assessment surveys conducted in l997 and l998 of hospitals, audiologists and educators as part of our state's involvement in the Marion Downs National Center (MDNC) for Infant Hearing project identified additional unmet goals such as public/provider information and training/education. Another needs assessment survey is being conducted with a final report by November 2000 (See Appendix B, UNHS Survey 2000).

A team of staff from MDH, the Department of Children, Families and Learning (DCFL) and the Department of Human Services (DHS) have offered training and technical assistance to hospital staff, audiologists, teachers of the deaf and hard of hearing, early childhood educators, special educators, public health nurses, perinatal nurses and others in the past two years. Unique to this team is that one member is a deaf consumer and attorney. She brings skills and perceptions that have enhanced team members' cultural competencies and activities.

Minnesota has moved from screening 8% of newborns in 1997 to a current estimate of 45-50% of the 65,000 Minnesota births per year. Of the 120 birthing hospitals in the state, approximately 33 reported UNHS programs as of October, 1999 and nearly half use UNHS computerized systems (e.g., OZ, HI*TRACK, others). Nearly all of our communities with populations between 15,000 and 100,000 currently have fully implemented UNHS programs. Many rural hospitals will develop cooperative programs with larger regional hospitals. Like most states in the nation, the large metropolitan hospitals are meeting more significant barriers for fully implementing UNHS/EHDI activities.

Only fifty- eight deaf and hard of hearing infants and toddlers birth through age 2 were enrolled in Early Childhood Special Education programs in 1998-1999. Based on number of births and hearing loss prevalence data, Minnesota Early Childhood programs should have been serving 600 infants and families. Unfortunately, due to no state data surveillance and tracking system, the actual number of babies screened or referred for diagnostic evaluation or number identified with hearing loss, let alone those missed or lost to follow-up is unknown. This information will not be retrievable without an effective tracking and follow-up system, which would include data reporting and management and the inherent constraints imposed by the need for informed consent.

The MDH is currently expanding our voluntary UNHS program to address the need for public information and provider training and education through a Maternal Child Health Bureau (MCHB) 4-year grant award. The goal is to screen 90-95% of newborns by 3 months of age and implement intervention by 6 months of age. A pilot test is planned for Spring 2001 to include tracking of hearing screening information on the supplementary birth certificate data system which is being revised by the MDH Center for Health Statistics. In addition, the UNHS grant program plans to add additional screening data to the Follow Along Program (FAP) data identification form.

An Advisory Committee is being established for the MCHB UNHS grant program and consists of representation from hospitals, health plans, consumers, providers, public health nursing, advocacy and minority groups. Members of the UNHS Advisory Committee will be solicited to guide this proposed EHDI data surveillance and tracking system.

Protocols for screening, assessment and amplification have been developed by a statewide audiology task force supported by the MDH (See Appendix C, Protocols ). Training on the protocols was started at a statewide audiology conference in October, 1999 and upon completion the protocols will be available on the MDH website. These protocols will be revised to include information on EHDI data surveillance and tracking systems as they are developed.

Another planned UNHS grant activity via contract with the University of Minnesota (UMN) Department of Otolaryngology (Audiology Clinic faculty) is to upgrade audiologic diagnostic competencies in order to better serve infants and their families. Audiologists from regional diagnostic audiology centers/areas will be trained and regional teams developed to link with appropriate intervention services. The training will include a focus on the role that audiologists, public health nurses, physicians, and early childhood educators have in data management and tracking systems.

In anticipation of future funding for EHDI data surveillance and tracking, the primary focus of the MCHB 4-year funded UNHS grant program was limited to enhancing screening activities and training audiologists and other health and education providers. Although many hospitals and birthing centers are providing newborn screening, they lack the capacity to offer comprehensive referral, tracking and follow-up services. As Dr. Christine Yoshinaga-Itano reported at an EHDI Regional Training Conference in Minneapolis, MN (6/28/00), while screening is a very important component to EHDI, the home based interventions, tracking and follow up are the critical components to assure that children and their families have the opportunities to meet their potential. Intervention must begin before 6 months of age yet be delivered within the context of the family's culture and language to predict successful language outcome.

Further Dr. Yoshinaga-Itano noted that by not identifying children early and intervening before 6 months of age, we create a 'second disability'. Children with only the disability of a mild to severe hearing loss at birth can reach an 80% or greater language quotient if they receive appropriate intervention and follow-up by 6 months. In response to this identified need, the MDH is planning to implement and integrate a sustainable statewide EHDI surveillance and tracking system, one capable of input from multiple EHDI providers which would assure seamless transitions for all babies from screening through intervention. In order to accomplish this, expanded collaboration will be needed with agencies within Minnesota, as well as cooperation with bordering states which offer birthing services for some Minnesota families.

With UNHS/EHDI, Minnesota has entered into partnerships with a number of agencies/organizations. While most of these partnerships relate to the development of screening, assessment and intervention services, there are some existing systems in place for following infants. Interagency partnerships are being developed for tracking and follow up to assure infants and families will not be missed and will be assisted in moving through readily accessible systems from screening to intervention within the context of the child's medical home.

The MDH and the DCFL have an agreement for collaborating to plan, implement and evaluate a comprehensive, early childhood intervention delivery system for young children with their families, consistent with Part C of Individuals with Disability Education Act (IDEA). The DCFL, DHS and MDH, with the advice and assistance of the Governor's Interagency Coordinating Council (ICC), is responsible for implementing the child-find system. In addition, MDH, DCFL and DHS have an interagency agreement (April 1999) for the State Agency Committee (SAC) which is "intended to promote the development, implementation, and maintenance of interagency, coordinated multi-disciplinary state and local early childhood intervention service systems for serving eligible children with disabilities from birth through age two, and their families (See Appendix D, Minnesota's Early Childhood Intervention System).

Minnesota's Title V Children with Special Health Needs (MCSHN) primary role is to promote the development of integrated health services for children with special health needs and their families through a network of agencies at the state, regional and local level. The UNHS program has a strong link to MCSHN via a toll free 1-800 telephone number, providing services and financial assistance to families, which is particularly important to assist in fitting infants with amplification as early possible (before 3 months of age). MCSHN is developing a statewide needs assessment system and enhanced data capacity for the purpose of providing population-based data which is critical for establishing priorities, service designs, and evaluation tools. Current MCSHN data bases for consumers will be assessed as a secondary source of information on children receiving services related to hearing loss.

The Follow Along Program (FAP) for infants and toddlers within the MDH Division of Family Health MCSHN Section is a population-based, early child-find prevention and intervention program, funded by Part C of the IDEA. FAP is a computer-assisted program that enables agencies to track infants and toddlers to ensure early identification and services for children who may have special needs. FAP is an interagency effort to improve service delivery and data collection on children at risk for health or developmental problems. Currently, 84 of the 87 counties in Minnesota have developed a Follow Along Program, which actively serves over 13,500 infants/children 0-3 years. The local managing agency is most often a Community Health Services (CHS) agency which is also Minnesota's local public health system. The software and forms that support the program are available free of charge. Regional steering committees guide decisions regarding program policies and procedures, as well as overall program design.

The goals of the Follow Along Program are:

• Support parents' efforts to enrich their children's lives by facilitating access to existing health, education, and human service programs and services.
• Provide an easy way for parents and health providers to exchange information about the growth and development of children who may have special needs.
• Help parents keep their children under the care of a primary physician.
• Facilitate the timely identification and assessment of children with special needs to assure services as soon as possible. (Ages and Stages Questionnaires, in English and Spanish).
• Facilitate local, regional, and statewide planning efforts by compiling and disseminating key data elements on children who may have special needs.
• Enhance ongoing efforts to increase the level of interagency and interpersonal communication, cooperation, and trust.

The preferred means for enrollment is through a home visit by the FAP provider, most often a public health nurse (See Appendix E, Follow Along Program - Identification Data Form). Currently, data are provided from the local managing agencies to the MDH semiannually. Discussion is currently underway to amend the FAP enrollment interview form and add new key data points for hearing screening, risk factors for hearing loss, intervention and follow-up.

FAP will be a major data repository to collect information from hospitals, audiologists, providers (physicians, public health nurses) and local Interagency Early Intervention Committees (IEICs). While FAP most often begins collecting data at three months of age, with EHDI indicators included, data collection will begin at birth in order to promote identification of hearing loss by 3 months of age and enrollment in Early Intervention by 6 months of age. Collaborating with the designers of the FAP data system (Affiliated Computer Services) is needed to expand the software program and explore the possibilities of integrating this system with the developing electronic birth/death certificate program and the newborn metabolic screening system. Activities related to enhancing the FAP data system to track infants/children may be the catalyst for linking vital statistics and newborn metabolic screening data.

Staff from Part C programs (DCFL, DHS, MDH) are cooperating with MCH staff in planning, implementing and training related to the proposed enhanced FAP data tracking system. Staff from Part C are uniquely qualified to assist in this area and have experience in working with community based systems which network with state data collection systems. In communities of color and larger populations of recent immigrants, cultural and language barriers will need to be addressed.

The MDH Center for Health Statistics is in the process of moving to electronic birth/death certificates and have identified pilot sites for testing. Staff have held discussions with Center staff who will be assisting in the UNHS funded pilot project to add UNHS/EHDI identifiers to the supplemental electronic birth certificate. Minnesota (MN) is also investigating common identifiers, such as bar codes, in order to link electronic birth/death certificate information with the MDH Newborn Metabolic Screening Program database. While both of the systems are Oracle based, there may be challenges in integrating older and newer systems and limited technical capacity for electronic transfer of data. In addition, EHDI staff will assess integrating OZ and HI*TRACK systems to birth certificate supplementary data systems.

Minnesota does not have a birth defects registry although efforts are underway to establish one. Proposed EHDI data surveillance and tracking activities may provide additional infrastructure for developing a birth defects registry,

The Interagency Early Identification System is supported at the grassroots level by local Interagency Early Intervention Committees (IEICs) (See Appendix D, Minnesota's Early Childhood Intervention System). Each IEIC is composed of representatives from local and regional health, education, and human service agencies, early childhood family education (ECFE) programs, public and private providers, parents of children with special needs, county boards and school boards. The role of the IEICs is to: develop and implement interagency policies and procedures on public awareness systems, and child find systems; evaluating the identification, referral and procedural safeguard systems; assuring Individual Family Services Plan (IFSP) development for eligible children and families; assuring services involve cooperating agencies in transitional plans; identifying current interagency services within the community; developing a plan for the allocation and expenditure of state and federal early intervention funds; participating in needs assessments and program planning activities by local health, human service and education agencies; and, preparing a yearly summary on the progress of the community in serving young children with special needs.

Minnesota also has a system of Regional Low Incidence Facilitators (RLIF). State education funding comes to the RLIF through DCFL for special needs planning of children with hearing loss. The RLIFs have assisted the state team in identifying fourteen regional teams comprised of an audiologist, an early childhood educator, and a teacher of the deaf/hard-of-hearing. Training for these teams, using a train-the-trainer model, began in June, 2000 and will continue through 2002. The goal of the trainings is to enhance the early education experience for deaf/hard-of-hearing children birth through age 2 and their families, with the potential to feed back into the tracking system on a longitudinal basis with performance outcomes. Each team will be responsible to bring information back to their respective regions and to network with local IEICs thereby enhancing their capacity to serve and follow infants and toddlers who are deaf/hard-of-hearing and their families. MDH UNHS staff, including Part C and genetics, will participate in the trainings.

A Quad Agency which includes representation from the MDH, Department of Human Services (DHS), DCFL, and Department of Economic Security (DES) was established by state statute (M.S. 256C.23-27). The goal of the Quad Agency is to promote the development, implementation and coordination of multi-disciplinary statewide. services at the state, regional and local level for serving deaf, deaf/blind, and hard of hearing individuals and their families. In 1999, the Quad Agency identified universal newborn hearing screening as their priority, especially building the state capacity to intervene early and ensure timely and culturally appropriate tracking and follow-up.

Regional networking with consumer groups will be facilitated by the existence of 8 state Regional Service Centers (RSC) and the MN Commission for Deaf and Hard-of-Hearing who serve deaf and hard of hearing people statewide (See Appendix F, Written Assurances). These two groups identified several areas of concern which need to be addressed as the surveillance system is developed (e.g., serving children born in border communities, ability of early intervention staff to address communication choice issues, missed newborns/children lost to follow-up). Supported through the DHS, the RSCs offer equipment loans, information, technical assistance and a variety of services to consumers and families. RSC staff also serve on the Quad Agency to promote state level interagency efforts to meet the needs of deaf and hard-of-hearing.

Nationally, MDH UNHS staff have been delegates to Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA). The DSHPSHWA offers strong support for UNHS and will continue to play a role as data management systems are developed at a national level. (See Appendix F, Written Assurances). Minnesota plans to create links that will have the capacity to feed data into a national data tracking system based on Centers for Disease Control and Prevention (CDC) Pilot National Database for Newborn Hearing Screening guidelines.

2. Goals and Objectives (See Table A, p. xx EHDI Goals, Objectives and Activities)

The primary goal of the EHDI proposed project is to design, implement and evaluate a sustainable State data surveillance, tracking and follow-up system capable of multiple EHDI provider inputs including hospitals, practitioners, public health agencies, and public and private early intervention programs. This system will integrate with existing state data bases including vital statistics (birth/death certificates), newborn metabolic screening, Follow Along Program and Early Intervention Part C.

At the present time MDH and collaborating agencies lack the capacity to achieve this goal. It is anticipated that MDH would need additional assistance in the areas of Research Science/Epidemiology, Information Technology and Audiology along with additional clerical support.

MDH is currently collaborating with the MDH Office of Minority Health on the MCHB UNHS grant project. This office will continue to advise MCH on culturally appropriate tracking and intervention methods for the EHDI proposed surveillance project. Additionally, the UNHS/EHDI Advisory Committee will include deaf and hard-of-hearing individuals, parents and others to bring cultural perspectives into the implementation of this project. University of Minnesota (UMN) staff, under the direction of Dr. Lisa Hunter, is currently conducting a research project ("Little Ear") on otitis media with Minnesota's Native American population. Dr. Hunter is also an UMN audiology faculty consultant on the UNHS project and will provide technical consultation to the EHDI project.

The following are proposed EHDI goals and objectives. Specific activities, time lines and personnel involved are identified in Table A, pages 1A - 5A.

Goal I. Establish coordination of proposed EHDI project and activities, including identification of key staff to design, implement and evaluate the EHDI data surveillance and tracking system.

Objective 1. Hire EHDI Project Coordinators Research Scientist (.5 FTE) and Audiology Specialist (.5 FTE)].

Objective 2. Identify MDH Information Technology Specialist(s) from the Vital Statistics and/or Newborn Metabolic Screening Program to provide consultation.

Objective 3. Identify members of UNHS Advisory Committee and others to serve on the EHDI Advisory Committee.

Objective 4. Contract with identified FAP information technology software and data management system designers (Affiliated Computer Services).

Goal II. Collaborate with state agencies, birthing facilities and health and education professionals to assess and design an effective EHDI surveillance system, assuring compatibility with national CDC data base and inclusion of Joint Committee on Infant Hearing (JCIH) benchmarks and quality indicators.

Objective 1. Enhance the current infant Follow Along Program (FAP) Identification Data Form to serve as the central collector for EHDI tracking and surveillance.

Objective 2. Collaborate with Vital Statistics and Newborn Metabolic Screening programs to develop mechanism for shared data reporting and retrieval.

Objective 3. Collaborate with Early Childhood Part C to develop a mechanism for shared data reporting and retrieval.

Objective 4. Develop flow chart and universal referral form (See Appendix G, Minnesota Early Intervention Deaf/Hard of Hearing Services) describing data entry points and communications with birthing facilities, audiology, primary care settings, public health nursing and early childhood so that children are not lost to follow up.

Goal III. Improve the skills, knowledge and attitudes of multi-disciplinary providers of services to infants with hearing loss and their families through a variety of information and training methodologies, including teleconferencing and remote video conferencing resources of MDH to access all regions of the state, to utilize EHDI data tracking/surveillance system.

Objective 1. Revise protocols (screening, assessment, amplification) to include information on EHDI data surveillance and tracking systems.

Objective 2. Develop training packages for birthing facilities, primary care provider settings, audiology, public health and early childhood including a focus on cultural sensitivity.

Objective 3. Conduct periodic random evaluations to determine effectiveness of the training and to identify additional training needs.

Goal IV. Pilot EHDI surveillance system in selected Minnesota counties/regions.

Objective 1. Utilize previously identified (MCHB UNHS grant project) 5-7 counties/regions to participate in expanded surveillance system.

Objective 2. Link pilot hospitals with public health FAP as per protocols.

Objective 3. Identify target audiologists, FAPs , primary care providers and early intervention programs within selected counties/regions to participate in pilot.

Objective 4. Evaluate pilot surveillance system as per evaluation protocol and conduct data analysis.

Goal V. Fully implement EHDI surveillance system so that 95% of babies born in Minnesota are part of the system.

Objective 1. Expand surveillance system statewide to all birthing facilities, audiology diagnostic centers, primary care settings, FAP's, and early intervention programs.

Objective 2. Identify population-based outcome data such as unexpected clusters of infants with hearing loss in particular regions at particular times, unexpected differences in measures of EHDI screening performance between hospitals, false positive rates, loss to followup rates, etc.

Objective 3. Identify unique risk factors, if any, associated with hearing loss in MN infants/children and their families.

Goal VI. Evaluate parent/family and provider satisfaction with EHDI data surveillance and tracking system, using benchmarks and quality indicators recommended by the JCIH 2000 Position Statement.

Objective 1. Conduct formal and informal surveys of parents/families and providers related to EHDI data surveillance and tracking systems, including those not participating in data tracking and surveillance.

Goal VII. Assure that fiscal and program requirements of grant funders are met.

Objective 1. Participate in one 2-day trip annually to Atlanta, GA to meet with program/grant officers.

Objective 2. Project Director and Coordinators will meet monthly to review goals, objectives, activities and related finances.

Objective 3. All required reporting documents submitted on a timely basis to CDC.

3. Description of Program and Methodology

The overall project model for addressing the proposed EHDI goals and objectives builds on existing systems and activities; strengthening and expanding partnerships among agencies, organizations and consumer groups. These partnerships will build on existing data tracking systems of Vital Statistics, Newborn Metabolic Screening, FAP, MCSHCN, and Early Intervention Child Count to create an integrated sustainable statewide surveillance, tracking and follow-up system for deaf and hard of hearing infants and their families. The tracking system will receive input from multiple EHDI sites, including hospitals, practitioners, public health agencies, and early education centers. Given 65,000 live births yearly, it is expected that 200 deaf or hard-of-hearing infants will be identified annually through this tracking system.

The EHDI surveillance system will require multiple points of data entry and sharing, including sites that have not historically kept these kinds of records or reported statistical information on their respective populations. With the challenge of having multiple points of data entry, it will be critical to design some type of a universal referral form draft. (See Appendix F, Minnesota Early Intervention Deaf/Hard of Hearing Services.) The system will only be effective when key stakeholders not only have the means for inputting data, but also are duly trained and convinced of the significance of maintaining and sharing this information. Establishing open lines of communication and providing feedback on surveillance and data tracking results will be crucial to the development, implementation and sustainability of this project.

The MCHB UNHS grant project expands existing screening efforts, provides professional training and plans to increase public/provider awareness. This EHDI proposed data surveillance and tracking system will complement the UNHS program objectives by assuring a full continuum of services from screening through intervention.

Continued technical assistance will be garnered from the National Center for Hearing Assessment and Management (NCHAM) at Utah State University (See Appendix F, Written Assurances), including their regional advisor, Les Schmelz of Iowa. Like Minnesota, Iowa has a voluntary rather than mandated plan for UNHS/EHDI, with a tracking and surveillance system in place with strong connections between the audiology and the educational system. The EHDI plan is for FAP to become the primary entry point into Minnesota's surveillance system with connections between data collected by birthing hospitals, public health nursing, primary care providers, audiology and early education.

4. Evaluation Plan

Overall program evaluation and monitoring will be a continuous process through the proposed five-year grant cycle with an ongoing focus on evaluating the ability of new (birth certificate) and existing data systems to track and follow-up deaf and hard of infants and their families. (For more specific detail, see Table A "EHDI Project Goals, Objectives and Activities.")

Until the birth certificate pilot studies are completed, all hospitals will be monitored for numbers of newborns screened and the quality of their programs. Data from the Follow Along Program on the numbers of newborns screening will be monitored also for reporting on the Title V MCH Performance Measures. It is anticipated that the process of refining and enhancing the UNHS/EHDI system in Minnesota will reflect improved health prevention and improvement in language skills for deaf and hard of hearing infants and their families as determined by number served, consumer satisfaction, and education outcomes.

The birth certificate UNHS/EHDI data is available electronically within two weeks but will be reviewed quarterly. FAP data are reported semi-annually but could be available quarterly. Age of enrollment of deaf/hard of hearing infants and children is currently reported by DCFL on an annual basis and available to EHDI program co-coordinators. EHDI staff will collaborate with DCFL to obtain this data on a quarterly basis.

5. Collaborative Efforts

MDH has existing agreements with several agencies as discussed previously. The EHDI project proposes to enhance intervention services by tracking children who are identified as deaf or hard-of-hearing. DCFL, DHS (Medicaid Deaf Services ) MCHSN, Part C ( FAP, IEIC, Family Support Networks, Quad Agency as described previously will be major partners. (See Appendix F, Written Assurances). MDH , DCFL and DHS have made significant commitments of staff time to date to promote UNHS/EHDI and to achieve full implementation of UNHS. The Quad Agency also meets monthly and has UNHS/EHDI as a priority.

The UNHS Survey 2000 includes questions for birthing facilities to determine their current EHDI activities and needs. From this information and activities to identify pilot birth certificate sites, the EHDI staff intend to select key rural and urban hospitals for collaboration. The Minnesota Council of Health Plans, representing many health plan hospital owners, continues to support voluntary activities to promote screening and identifies the proposed EHDI data surveillance and tracking plan as an important step to further UNHS. (See Appendix F, Written Assurances). Primary care providers, such as Dr. Laura Wills, a pediatrician from the University of Minnesota Physicians, and others from the 1998 UNHS Voluntary Plan task force continue to support UNHS/EHDI activities. (See Appendix F, Written Assurances).

Minnesota is bordered by 4 states (North Dakota, South Dakota, Iowa and Wisconsin). The UNHS/EDHI Directors from both Iowa and Wisconsin are working with MDH to strengthen current inter-state collaborative efforts and develop systems to track newborns crossing state borders. (See Appendix F. Written Assurances). The UNHS Program Co-Coordinator has been in verbal contact with North Dakota's health department UNHS director regarding reciprocal relationships. MDH will identify members of the UNHS Advisory Committee, a multi-disciplinary advisory group including parents and consumers, to assist with overseeing the grant activities.

6. Staffing and Management System

The Maternal Child Health Section has limited staff capacity to develop, implement and evaluate the EHDI data surveillance and tracking system. Other than the part-time UNHS Co-Coordinator (Pat Rice) and the proposed EHDI Project Director (Penny Hatcher), there are no available staff to coordinate the EHDI project. Thus the CDC funding requested is primarily to establish two part-time positions (Research Scientist II, .5 FTE; and Audiology Specialist, .5 FTE) to serve as EHDI Project Co-Coordinators. Requirements for these positions will include knowledge and skills in data surveillance and tracking, population-based public health, epidemiology and data/records management. Information Technology Specialists from either the Vital Statistics and/or the Newborn Metabolic Screening Programs will be participating initially as technical consultants to assure that EHDI data collected are compatible with future electronic and web based systems.

Existing multi-agency staff who will support the project, several of which have experience with managing populations-based data surveillance and tracking systems, include the following:

Dr. Penny Hatcher, (MDH) the Project Director, is the Child and Adolescent Health Promotion/Screening Unit supervisor in the MCH Section. She has 30 years of experience in nursing, especially child health and public health, as well as experience with research grants as principal and co-investigator. (See Appendix H, Resumes).

Patricia Rice is a MDH staff audiologist (.6 FTE) who co-coordinates UHNS activities. She brings 30 years of experience in pediatric audiology and working with deaf and hard of hearing children at the Minnesota State Academy for the Deaf. Ms. Rice chaired the multidisciplinary committee which developed the 1998 voluntary UNHS plan for the legislature.

Lola Janke (MDH) is the Coordinator of the Follow Along Program (FAP) in MSHN Section. She also has almost 30 years of MDH experience working with children with special health needs with MDH. (See Appendix H, Resumes)

Kristin Peterson, (MDH) a genetic counselor, provides technical assistance, training/education and consultation services for the state public health system. She also provides follow-up for the statewide newborn metabolic screening program and genetic counseling services in selected MCSHN clinics.

Janice Jones (MDH) is the Assistant Director of the Center for Health Statistics and will coordinate the pilot testing of hearing screening data in the birth certificate supplementary data section. She will also provide technical assistance for linkages between other data systems.

Dr. David Jinks (MDH) is the Director of the Newborn Metabolic Screening Laboratory and will provide consultation for linking EHDI data surveillance and tracking system with the newborn metabolic screening data base. Information Technology Specialists in either the Center for Health Statistics or the Public Health Laboratories will provide technical assistance and consultation to EHDI staff to assure that data tracking plans are compatible with various data systems (Oracle, OZ/SIMS, HI*TRACK, FAP, etc.).

Janet Rubenstein (DCFL) is the Director-at Large for the Infant and Toddlers Coordinating Board and Program Coordinator for Part C, IDEA at the DCFL with a special focus on interagency collaboration, data surveillance and systems change. She is responsible for the annual Part C state plan, is staff on the Governor's Interagency Coordinating Council on Early Childhood Intervention, and works closely with MCSHN Title V staff to support Part C projects.

7. Organizational Structure and Facilities

The Minnesota Department of Health (MDH) is one of the administrative agencies of state government. Its Commissioner of Health is appointed by the governor with confirmation by the legislature. State law imposes upon the Commissioner the broad responsibility for the development and maintenance of an organized system of programs and services for "protecting, maintaining, and improving the health of the citizens of Minnesota." (See Appendix I, Minnesota Department of Health and Division of Family Health Organizational Charts).

The Minnesota Department of Health has had over a century of experience "protecting, maintaining, and improving the health of Minnesotans. In the 1970s its leadership led to the establishment of a statewide system of 49 Community Health Boards covering all of the state's 87 counties. This system operates as a state-local partnership with ongoing dialogue and policy discussion through the State Community Health Advisory Committees (SCHSAC) who develop and formulate an annual work plan for focused attention to priority issues.

Although the major source of funding is local, ongoing state subsidies support local core public health activities and public health services. In addition, by statute, two-thirds of the federal MCH Services Block Grant is also distributed by formula to Community Health Boards. The Boards must comply with a number of statutory requirements including a comprehensive assessment of their populations including input from the public. State leadership and technical support is provided in this process.

Within the Departments' Bureau of Family and Community Health is the Division of Family Health. The Division is organized into the Director's Office and five sections, all of which engage in maternal and child health activities: Maternal and Child Health (MCH), Minnesota Children with Special Health Needs (MCSHN), Center for Health Promotion, and Supplemental Nutrition Program (Women, Infants and Children [WIC]). (See Appendix I). The Division of Family Health Mission Statement is as follows: The Division of Family Health is responsible for ensuring optimal health outcomes for children, families, and communities.

Using a broad-based public input process, the Department developed public health goals and objectives for 2004. Almost all of these Public Health Improvement Goals for 2004 contain objectives related to the maternal and child populations. The second goal is to Improve birth outcomes and early childhood development. One objective (2.12) under this goal is to Increase to 90 percent the number of newborns who have hearing screened in the hospital as part of a comprehensive newborn hearing screening program..

Title V Performance Measures: The Title V Performance measures were developed as a response to the federal Government Performance and Results Act (CPRA), designed to make states more accountable for the monies they receive. This activity resulted in states being required to report on 18 core performance measures and five core outcome measures. One of the National Performance Measure requires reporting on the Percentage of newborns who have been screened for hearing impairment before hospital discharge.

Maternal-Child Health (MCH) Section: The MCH Section strives to improve the health status of children and youth, women and their families. The Section provides a focal point for influencing the efforts of a broad range of agencies and programs committed to this goal. Its primary functions have been quality assurance of public sector health services, assurance of targeted outreach and service coordination for hard-to-reach and high-risk populations, and community health promotion. Within the MCH Section is the Hearing and Vision Conservation Program that is responsible for state wide hearing and vision screening training for all levels of service providers and volunteers. Since 1998, UNHS has been discussed in over twenty-two trainings (>400 participants), including trainings for the federal Early Periodic, Screening, Diagnosis and Treatment (EPSDT) program. Discussion with DHS and MDH to include UNHS as a component of the EPSDT program as well as a standard of care reimbursable by third party payment plans continue.

The Human Genetics Program role is to: provide technical expertise to other programs within MDH and to the public health system statewide; provide follow-up and collection of outcome data for the MDH Newborn Screening Program; influence public health policy by staffing and participating in advisory groups; and provide genetic counseling services via selected Minnesota Children with Special Health Needs (MCSHN) clinics statewide.

The mission of the Office of Minority Health, a special initiative under the Commissioner of Health, is to assist in improving the health of people of color in Minnesota. Through the Office of Minority Health, the Minority Health Advisory Committee provides input on health issues and strategies to reduce and eliminate the gaps and disparities in the health of population of color and they provide profiles of populations of color. The topic of UNHS has been presented to the Minority Health Advisory Committee and plans are in progress to continue discussions with this group on EHDI. The Office of Minority Health Director is also collaborating with the UNHS Advisory Committee ensure that the EHDI needs of disparate groups are addressed. The Center for Health Statistics is responsible for creating and maintaining the official records of each birth and death that occurs within Minnesota. The Center is in the midst of a Vital Statistics redesign project which will result in the implementation of a centralized electronic vital records system through the use of electronic technology for the reporting of birth and death information. A pilot of the system is planned for early Fall 2000 and will include county registrars, hospitals, physicians in 3 to 4 representative counties. This system will become a fully electronic transfer by year 2001. The new electronic system has the capacity for additional supplemental screens for use in collecting data on newborns, including receipt of data from OZ and HI*TRACK. By interfacing with the upgraded system, the MDH will have enhanced capability to track UNHS in hospitals and make expedient referrals to local Community Health Services (CHS) who will follow these at risk children with the Follow Along Program. The Center is supportive of using the birth record as a point of contact for tracking of health status and health trends of Minnesota children.

MCSHN administers the MDH portion of Minnesota's Interagency Early Childhood Intervention System. This system is designed to promote and enhance a coordinated system for children birth through age five who have a developmental delay, by encouraging a family-centered approach and interagency collaboration. Minnesota's State Interagency Coordinating Council (ICC) on Early Intervention provides assistance to the state agencies on the implementation of early intervention programs. The ICC consists of up to 25 members appointed by the Governor that include parents and professionals involved in issues related to early intervention. The ICC meets bimonthly and has established the following committees: Executive, nominating/membership, communications, and legislative.

MDH staff will have access to state motor pool cars; the MDH Distance Learning Center, a fully equipped facility with capability of broadcasting presentations state wide (about 40 sites in over 25 counties); and the MDH Service Center in St. Paul a centrally located conference center with five conference rooms of various sizes, one of which can seat up to 200 persons. This facility is easily accessible and has ample parking.

Table A: EHDI Proposed Goals, Objectives and Activities - Minnesota's EHDI Data Surveillance and Tracking System

Project Period: 1 September 2000 - 31 August 2005

UNHS Coord = MDH Universal Newborn Hearing Screening (UNHS) Coordinator (Pat Rice)
EHDI Proj Dir = MDH Early Hearing Detection Intervention (EDHI) Project Director (Dr. Penny Hatcher)
EHDI Coords = MDH EHDI Co-Coordinators (Research Scientist II/.5 FTE and Audiology Specialist/.5 FTE)
ITS = MDH Information Technology Specialist (.15 FTE)
FAP = Follow Along Program Coordinator (Lola Janhke)
ACS = Affiliated Computer Services (contractor for FAP data base)
GC = MDH Genetic Counselor (Kristen Peterson)
DCFL = Department of Children, Family and Learning's Part C Early Intervention Coordinator (Janet Rubenstein)
CHS = Center for Health Statistics (Janice Jones)
NMS = Newborn Metabolic Screening Program Director (Dr. David Jinks)
Adv Com = EHDI Advisory Committee