Title: Refining Statewide Universal Newborn Hearing Screening Systems in Minnesota
Project Number CFDA 93.11 OZZ
Grantee: Minnesota Department of Health
Project Director: Penny A. Hatcher, MSH, DrPH,
Address: Supervisor, Child Health Screening/Promotion Unit
85 East Seventh Place, Box 64882
St. Paul, MN 55164-0882
Phone: 651-281-9973
Fax: 651-215-8953
Internet: penny.hatcher@health.state.mn.us
Project Period: 4 years
Budget Period: From 4-1-00 to 3-31-04
PURPOSE; The overall purpose of this grant application is to expand and refine current Universal Newborn Hearing Screening (UNHS) activities so that 90% of infants are screened far hearing loss at birth and to develop a sustainable state-wide program which will ensure effective tracking and follow up, comprehensive assessment and identification by three months of age and enrollment in an early intervention program by six months of age. This plan and continuing Minnesota Department of Health (MDH) activities are based on the rationale for early identification and intervention to eliminate the serious consequences of unidentified or late identified hearing loss.
PROBLEM: While the percentage of Minnesota newborns screened for hearing loss has increased steadily from 8% in 1997 to 40% in 1999 with indications to be at 50% by 4/30/2000, Minnesota remains short of a goal of 90% full implementation. Numbers of deaf and hard of hearing children receiving early intervention services (0-3 years) increased from 56 children in 1997 to approximately 58 children in 1999. This number remains far below the expected number at full UNHS implementation of 600 children in the 0-3 year age group based on 65,000 live births annually and national prevalence data. Increasing numbers of families are asking for bearing screening in hospitals, however there is a general lack of information on the importance of early identification of hearing loss by the public and professionals as well. This information base needs to be increased.
A multi-disciplinary team, the Quad-Agency, was established to facilitate interagency collaboration and to build capacity with MDH as the lead agency. Members of the team represent the departments of health (MDH), education (DCFL), human services (DHS) and economic security (DES). Within the Department of Health, UNHS activities have been coordinated with Minnesota Children with Special Health Needs (MCSHN) [Minnesota's Title V program for children with special health needs] and Early Childhood Intervention, Part C, including the Follow Along Program (FAP) for infants and toddlers. Needs assessments have been conducted of hospitals, audiologists and educators to identify gaps in the state. These activities have assisted MDH and the Quad-Agency team to identify unmet needs related to public information and awareness, education and training, tracking and follow up.
GOALS AND OBJECTIVES: The overall goal of this project is to assist the Title V Program in collaboration with other agencies to build a statewide infrastructure that supports a comprehensive, community-based system of screening, identification/assessment, and early intervention for deaf and hard of hearing children and their families. Objective #1 is to establish an advisory committee representing professionals, families and consumers of services for infants with hearing loss, including minority populations. Objective #2 is to increase public awareness of the importance of this issue and increase the demand for hospital based hearing screening. Objective #3 is to offer education and training in order to expand the knowledge and skills of professionals who serve deaf and hard of hearing children and their families from screening through early intervention. Objective #4 is to refine the tracking and follow along system to assure that babies are not missed and services, including amplification fitting, are timely and appropriate.
METHODOLOGY:
Objective #1 Activities: Identify project co-coordinators for a full time equivalency ( .6 MDH and .4 University of Minnesota) to establish the advisory committee and to carry out and evaluate grant activities. Identify key agencies including MCSHN and Part C representatives, including parents and consumers to serve on a multi-disciplinary advisory committee to direct UNHS activities. The committee will be led by MDH and will be responsible to assist in the direction and evaluation of UNHS activities utilizing a variety of evaluation tools.
Objective # 2 Activities: Conduct focus groups to identify appropriate information and public awareness activities. Use available culturally appropriate UNHS Public Service Announcements and develop videotapes, newspaper articles, electronic information and fact sheets for local medial in collaboration with statewide deaf and hard of hearing consumer organizations and minority groups. Increase the demand for hearing screening through public information materials made available to birthing classes so that family systems value UNHS. Link with current MDH (Women, Infant and Children food program [WIC], MCSHN, FAR), DCFL and DHS programs to develop informational marketing campaigns with local linkage teams for statewide distribution. Convene groups of purchasers including insurance companies, Health Maintenance organizations (HMOs) and state Medical Assistance program representatives to garner their support for inclusion of UNHS as a preventative health standard of care and of assistive technologies, including hearing aids, as covered medical benefits.
Objective #3 Activities: Conduct needs assessments to clarify specific areas of education and training needs. Offer a variety of training, including hands-on experience designed to improve the skills of hospital staff, audiologists, other health care providers, teachers of the deaf/hard of hearing and other educators through workshops, seminars, practica, information updates and ongoing continuing education activities. Contract with the University of Minnesota Clinic Audio logy faculty to provide segments of the needs assessments and training. Under contract
University staff will also assess current capacity of audiology services and build capacity in areas of the state to better serve deaf and hard of hearing infants and their families. Explore distance learning options including internet, video conferencing, remote interpreting facilities and teleconferencing.
Objective #4 Expand and refine existing tracking and follow-up linkages with current MCSHN, FAP, Interagency Early Intervention Committees (IEIC), regional low incidence facilitators ( RLIFs) and DCFL tracking systems to allow for babies to be screened, identified and followed through a seamless sustainable family-friendly health care system. Survey other states with current UNHS mandates to obtain information and samples of their tracking and follow-up methods. Develop partnerships between hospitals and community health care agencies to follow at risks infants. Design and develop supplementary birth certificate coding and informed consents for pilot testing in hospitals with current UNHS programs.
EVALUATION: Evaluate successful completion of the project goals using a variety of tools including survey data, phone and random site visit verification of hospital reports, Birth Certificate data of hospital hearing screening, Part C Follow Along Program for infants and toddlers data base, MCSHN 1-800 telephone number statistics and MCSHN statistics on age at which hearing aids are fitted. DCFL documentation of increased enrollment in early intervention programs (0-3) for deaf and hard of hearing children and written evaluation forms from workshops for professionals, parents and students. Use of focus groups to evaluate success of public awareness campaigns and parent satisfaction surveys to assess program effectiveness. Evaluate overall system and achievement of performance indicators. Ongoing consultation will be maintained with the established Advisory Committee in evaluation feedback and methods.
KEY WORDS: voluntary universal newborn hearing screening, Minnesota, enhanced tracking and follow along systems, state agency partnerships
PROJECT NARRATIVE (4.2)
4.2.1 Purpose of the Project
The purpose of this project application is to enhance and refine existing universal newborn hearing screening (UHNS) systems at the state, regional and local level in order to achieve 90% full implementation of infants screened for hearing loss prior to hospital discharge, diagnosis by 3 months of age and appropriate intervention by 6 months of age with an effective tracking and follow up mechanism in place. This proposal is submitted as an application to achieve full implementation and program refinement to address these specific unmet goals.
In 1996 the Early Identification and Intervention for Hearing Loss Workgroup, a voluntary, multi-disciplinary group of parents, consumers and professionals, conducted an informal survey of audiologists statewide. The results of the survey indicated that the average age of identification of hearing loss in Minnesota was over 2 years of age with intervention delayed even beyond this age. Based on what was known about the critical window of opportunity for language development, this was unacceptable. The Workgroup brought this issue and their concerns to the Minnesota Department of Health (MDH) and the legislature. The legislature referred the issue to the state's Health Technologies Advisory Commission (HTAC). Their report completed in 1997 supported the use of physiologic screening technologies of automated auditory brainstem response (AABR) and otoacoustic emissions (OAE) to screen newborns for hearing loss in the hospital. MDH subsequently identified UNHS as an important core public health function in the Title V MCH block grant in 1997.
Following the 1997 legislative session MDH was directed to convene a multi-disciplinary workgroup to develop a voluntary plan to implement UNHS in the state. The workgroup identified eight key goals in its report which was completed in January 1998 (See Appendix A Voluntary Implementation Plan for UNHS). They established a target of screening 85°/o of newborns by year-end 2000. Since that time Minnesota has increased the numbers of newborns screened from 8% in 1997 to 40% in 1999. By April of 2000 it is anticipated that the number screened will reach 50% . The goals delineated in the plan have been updated three times since the initial writing and demonstrate significant progress in many areas.
Staff from health, education, human services and economic security have been meeting regularly and planning activities to address the goals of the report. Unmet goals include Training, Public Information and Tracking and Follow up. Further evidence for these needs was corroborated in Needs Assessment Surveys conducted in 1997 and 1998 of hospitals, audiologists and educators as part of our state's involvement in the Marion Downs National Center for Infant Hearing project (MDNC). While significant progress has been made toward reaching full implementation, it is perceived that the Minnesota Department of Health (MDH) [and Minnesota Children with Special Health Needs ( MCSHN) and Part C programs within the department in collaboration with other agencies] needs assistance to reach a 90-100% full implementation goal for all components from screening through assessment and intervention. The plan identifies individual components needed, however current staffing levels have limited progress toward creating a sustainable state wide plan. Assistance is needed in the refinement of existing programs to achieve a sustainable system which will link families to appropriate assessment, evaluation and educational resources within the context of their medical home in the community.
With full implementation of UNHS, the MDH and Minnesota Department of Children, Families and Learning (DCFL) anticipate that the age of identification of hearing loss for children in Minnesota will be decreased to under 3 months of age. Public information activities will increase parental acceptance of UNHS and will result in increased demand for hospital based bearing screening and assist in achieving full implementation of UNHS. Improved training and education for professionals in the fields of medicine, nursing, audiology, education and social services will improve their knowledge, skills and attitudes and enhance screening, assessment, evaluation, diagnosis and early intervention.
Refinement of interagency partnerships will enhance tracking and follow up so that staff in FAP, MCSHN, vital statistics ( Birth Certificate), ECS and IEIC will be able 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. With this system change age appropriate early intervention can reasonably be achieved by 6 months of age. At all levels families will receive services from well trained knowledgeable professionals who will include them as equal partners in the decision making process and consider their cultural needs. Two way communication with the advisory committee will allow for continuing feedback and assist in the assessment and evaluation of the systems change brought about by the refinement of the UNHS program.
4.3.2 Organizational Experience and Capacity
The Minnesota Department of Health has taken a leadership role in the state's ongoing development of a system for early identification and early intervention for infants with hearing loss and their families. The 1998 Voluntary Implementation Plan for Universal Newborn Hearing Screening (See Appendix A) with its goals updated Aug 1999 demonstrates the department's experience and capability to coordinate and support planning, implementation and evaluation of a comprehensive system to meet the UNHS priority. MDH has made UNHS a priority in the Title V plan's performance measures. (See Appendix B Title V Performance Measures).
The Health Technology Advisory Committee (HTAC) of the Minnesota Health Care Commission, released a report in June 1998 "Universal Newborn Hearing Screening.." The HTAC was established in 1992 by the Minnesota State Legislature as a non-partisan, independent body charged with assessing new health care technologies with a Minnesota perspective. The HTAC report recommended hospital based hearing screening for newborns using AABR or OAE technology under the supervision of an audiologist as the standard of care. The HTAC report was disseminated to the Directors of Speech and Hearing Programs in State Health and Welfare Agencies annual meeting (DSHPSHWA) and to the participants in the Marion Down National Center (MDNC).
The Marion Downs National Center (MDNC) for Infant Hearing, a national newborn hearing screening project enabled by a Maternal Child Health Bureau (MCHB) Grant to Colorado, involves the MDH as one of eighteen participating states whose goal is to screen 85% of their babies by year 2000. All hospitals, audiologists and educational programs (IEICs) have been surveyed by a tool developed by the MDNC, and they provided data analysis used to develop Minnesota's UNHS plan. The MDNC has provided technical assistance and training to our state multi-agency UNHS team. Leading experts from the Center such as Dr. Christine Yoshinaga-ltano have made site visits and presentations to state audiologists and educators. (See Appendix L Letters of Support).
A Quad Agency which includes representation from the MDH, Department of Human Services (DHS), DCFL, and Department of Economic Security (DBS) was established by state statute (M.S. 256C.23-2T). A written agreement farther defines the roles of each agency. 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. (See Appendix C State of Minnesota Interagency Agreement [title and signatory pages only]). 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. [The Director of the Deaf and Hard of Hearing Services Division of the DHS coordinates the work of the interagency policy and program development team.]
A team of MDH, DCFL and DHS staff 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. Training materials have been developed including a display board and slide show. Staff from the state agencies and contract staff have worked closely together and have a passion to make full implementation of UNHS a reality in Minnesota. These staff also have the experience and credentialing needed as Minnesota moves into refining existing programs and partnerships. Unique to this team is that one member (MCB) is also a consumer (deaf) who brings skills and perceptions that have enhanced team members' cultural competencies and activities.
Minnesota Children with Special Health Needs (MCSHN) a major project funded by the Title V Block Grant 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 program seeks to achieve this outcome through collaboration with families, health care providers, payers, purchasers, policy makers and other system elements relevant to children with special health needs. 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. This program currently has strong links 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). MSCHN will play a key role for families who need assistance financially or for additional links to public and private agencies who serve deaf and hard of hearing children and their families.
With the increased emphasis on core public health functions, the MCSHN section provides and supports a variety of services that sustain and enhance community-based systems of services. MCSHN provides; reimbursement for diagnostic and treatment services; medical and rehabilitative clinic services throughout the state where comparable services are not available; technical consultation and training to public and private providers and payors, families and other state and local agency staff; family support, information and referral) including a 1-800 telephone number for intake and referral; participation on local and state interagency collaborative groups; and involvement in or initiation of information, research and policy issues related the MCSHN target population.
In conjunction with Part C, a research project to describe the population of infants and toddlers under three years of age who are at-risk for developmental delay has been implemented. This project is aimed at identifying the risk factors that define this population and the child's and family's needs. MCSHN continues to disseminate its condition-specific Guidelines for Care for Children with Special Health Care Needs which include a guideline on Deaf and Hard of Hearing. These Guidelines have been displayed at national conferences and workshops, such as the DSHPSHWA (10/98), the American Speech, Language and Hearing Association (ASHA) National Conference (10/98), and the Maternal and Child Health (MCH) Leadership Skills Training Institute (10/98).
MCSHN staff have developed expertise at both the local and state level regarding resource availability, system development and access issues for children with special health needs. Staff collaborate with the University of Minnesota School of Nursing to train graduate level nurses for work with children with special health needs. Participation in state, regional and local policy making boards and committees include but is not limited to: the Minnesota Department of Human Services Medicaid Citizen's Advisory Committee, Interagency Early Intervention Committees (IEIC), Family Support and Preservation, the State Disabilities Council, and the Minnesota Information and Referral Association.
Part H (C) Infant Disability Education Act (IDEA). The MDH and the DCFL have an agreement for collaborating to plan and implement a comprehensive, early childhood intervention delivery system for young children with their families, consistent with Part C of IDEA. (See Appendix D Interagency Agreement, DCFL and MDH). The DCFL and MDH, with the advice and assistance of the Governor's 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 multidisciplinary state and local early childhood intervention service systems for serving eligible children with disabilities from birth through age two, and their families. (See Appendix E Minnesota's Early Childhood Intervention System.)
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 Infant Disability Education Act (IDEA). FAR 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. FAR is an interagency effort to improve service delivery and data collection on children at risk for health or developmental problems. Currently, 82 of the 87 counties in Minnesota have developed a Follow Along Program. As of June 1999, 9,000 children 0-3 years were served in 50 counties by the PAP. The local managing agency is most often a Community Health Services (CHS) agency. 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 FAP are:
The preferred means for enrollment, though, is through a home visit by the FAP provider, most often a public health nurse. (See Appendix F Follow Along Program - Identification Data Form). Currently, data are provided from the local managing agencies to the MDH semiannually. Staff from Part C programs (DCFL, DHS, MDH/MCSHN) are cooperating with MCH staff in planning and implementation, particularly with education and training and infant tracking and follow along for deaf and hard of hearing children and their families. MDH staff have taken an active role in the national organization Directors of Speech and Hearing Programs in State Health and Welfare agencies (DSHPSHWA). This group was part of early efforts to promote UNHS and remains active with the Centers for Disease control in helping to design effective data management systems.
4.2.3 Administration and Organization
The Minnesota Department of Health (MDH) is one of the major 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 G 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.
Ongoing state subsidy support local core public health activities and public health services, Although the major source of funding is local, 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.
Division of Family Health 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, Supplemental Nutrition Program (Women, Infants and Children [WIC]), arid Tobacco Prevention and Control. (See Appendix G). 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. (See Appendix H Public Health Improvement Goals for 2004).
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. The tenth 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 bearing 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. 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.
Supplemental Nutrition Program/Women, Infants and Children (WIC) The Minnesota WIC Program has been providing nutrition education and services to low income women and children since 1974. The primary purpose of this program is to ensure policies, procedures, rules and regulations are adhered to in the 72 local agencies that administer WIC via the Public Health Nursing Services, Community Health Service Agencies, Community Action Programs, Tribal Reservations and a Migrant Health Agency. In many WIC clinics, participants have access to other health services such as an immunization clinic, child and teen check-up, Early Childhood and Family Education (ECFE) Services, as well as many social services.
WIC services are offered in every county in the state, servicing approximately 95,000 participants per month. In the largest metropolitan area (Minneapolis and St. Paul) 46% of the total live births occur. Approximately one third for these are African American or American Indian. There is a need to collaborate with WIC Programs to provide universal newborn hearing screening information in culturally sensitive ways to women and their families, especially pregnant women and women of color.
Office of Minority Health 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. Its goal is to reduce the burden of preventable disease and illness through health promotion and disease prevention initiatives; to support positive health delivery systems, programs and strategies which target and close the gaps; and, address the disparities in health status of people of color. The Office of Minority health is focused on assessment, policy, planning, advocacy, coordination and evaluation of related effectiveness of minority health activities to eliminate health disparities among 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 Center for Health Statistics maintains a birth certificate system which also tracks metabolic screening in Minnesota. This system will become a fully electronic transfer by year 2001. 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.
Minnesota's Interagency Early Childhood Intervenrion System Minnesota's interagency Early Intervention 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. (See Appendix E). Minnesota's Stale 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.
The Interagency Early Identification System is supported at the grassroots level by local Interagency Early Intervention Committees (IElCs). 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.
4.2.4 Available resources.
All existing and new MDH staff (intern) who will be involved in the proposed UNHS grant project will be housed in the newly remodeled office space in downtown Saint Paul. Existing multi-agency staff who will support the project included the following: (See Attachment F Key Personnel and Appendix J Biographical Sketches).
Penny Hatcher, 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 grants as principal and co-investigator.
Patricia Rice is a MDH staff audiologist (.6 FTE) who currently 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.
Kirsten McDaniel, a certified audiologist, assumed the UNHS Project Coordinator position for the University of Minnesota (U of M) Lions 5M UNHS grant program in September 1999. She was the coordinator of the Infant Hearing Program with die Arkansas Department of Health. Ms. Rice (.6 FTE) and Ms. McDaniel (.4 FTE, in kind) will serve as Co-Coordinators of this proposed Minnesota UNHS program.
Lola Janke is the Coordinator of the Follow Along Program (FAP) in MDH/MCSHN Section. She also has almost 30 years of experience working with children with special health needs with MDH.
Kristin Peterson, a geneticist, 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.
Shelia Farnan, as Special Projects Coordinator with WIC, will assist the UNHS program staff with accessing the WIC population for the public information campaign and other related education/training activities for WIC staff.
Lou Fuller is the Director of the Office of Minority Health, MDH. She reports directly to the Commissioner of Health and is part of the senior management team. Ms. Fuller, over the past thirty-five years, has held various leadership, public policy and administrative positions; designed and developed health and human service programs, and has worked in paid and volunteer positions to address the removal of barriers for less advantaged people.
John Oswald is the Director of the Center far Health Statistics, MDH and will coordinate the pilot testing of including UNHS data in the birth certificate supplementary data section.
Janet Rubenstein 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 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 and support the 1-800 number. She has worked closely with MDH and DHS staff to initiate the voluntary UNHS implementation plan.
Marv Cashman-Bakken is the Director of the Resource Center for Deaf and Hard of Hearing at DCFL. She was instrumental on developing the 1997 voluntary UNHS plan and implementing subsequent UNHS initiatives and represents Minnesota at the national level in conjunction with the MDNC as both a provider and consumer. Ms. Cashman-Bakken is one of three deaf children in her family and former deaf educator.
Amy McQuaid represents the DHS in her supervisory activities with the program planning team and interpreter coordination of Deaf and Hard of Hearing Services Division, relating closely with statewide regional service centers for deaf/hard of hearing citizens. Her experiences with consumers, evaluating accessibility of statewide programs for hearing impaired persons and ongoing UNHS initiatives is vital to the proposed grant activities.
Drs. Robert Margolis. Gail Donaldson. and Lisa Hunter from the U of M Department of Otolaryngology/Audiology Clinic will serve as the clinical consultants (1,040/year; contractual) to assess, develop, implement and evaluate an education/training program for service providers and for the proposed Regional Audiologic Centers/Areas.
Vicki Anderson, a masters prepared audiologist, was instrumental in the initial UNHS statewide voluntary plan and co-developed a hearing screening program at a large metropolitan hospital. She developed the first draft of UNHS protocols in collaboration with statewide audiologists and materials for the MDH UNHS website. Ms. Andersen also has experience in developing slides, television programs, videos and other UNHS training materials for providers and consumers.
MDH' staff will have access to state motor pool ears; the MDH Distance Learning Center, a fully equipped facility with capability of broadcasting presentations state wide; and die MDH Service Center in SL 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.
4.2.5 Identification of Target Population and Service Availability
The grant will target screening all infants for hearing loss, following at risk infants through identification by 3 months of age, and subsequently into appropriate early intervention programs by 6 months of age for those children who are identified as deaf or hard of hearing. Nationally, deaf and hard of bearing children have not been identified until after age 2, and Minnesota data is consistent with the nation. With new technology ( AABR and OAE) it is possible to screen all infants at birth for hearing loss. While initially, these screening technologies were found to fail approximately 10% of all babies who were screened which resulted in many false positives, using more acceptable protocols. These refer rates can be dropped to approximately 3-4%. In the scenario for Minnesota, 65,000 babies will be screened for hearing loss, 2600 are expected to be referred from screening, and of these children 180-200 will be found to be deaf or hard of hearing based on national prevalence data.
The high false positive rates, reported initially, continue to be a barrier in Minnesota for many physicians who may not have seen recent studies. There is a significant need to educate professionals in medicine, nursing, audiology, education, and social services regarding why early identification is important to deaf and hard of hearing children and why enrollment in appropriate early intervention programs by 6 months of age is critical. As UNHS programs are developed in 125 hospitals state wide it is imperative that they network with local public health nursing and MCSHN ( Minnesota's Title V program for children with special health needs) to assist with the evaluation and follow up and with Part C early intervention. While many hospitals have made these links, the system needs refinement for it to work consistently for all families.
MCHSN has several programs described in 4.2.2 of this document to serve the needs of children with special health needs. MCSHN has not had access to finding deaf and hard of hearing infants before the development of AABR and OAE technologies for physiologic screening of hearing. As Minnesota moves to full implementation of UNHS MSCHN child find activities should be further enhanced. A 1-800 telephone number was established with the cooperation of Part C program to make services more readily available for families. This line is staffed by 2 public health nurses who are able to assist families not only with financial information, but helping them connect with other appropriate resources. Payment for bearing aids remains a major barrier for many families as well as timely fitting of hearing aids (before 6 months of age). Consequently, MDH will explorer a leaner program to assist with this. Parents would also like to have access to other parents and consumers as mentors and to education and information which will give them needed skills to appropriately parent their deaf and hard of hearing children. These issues will be addressed in the grant to with refinement of regional and local resources in cooperation with DCFL and DHS (Regional Service Centers).
At the community level most hospitals do not yet have UNHS programs. Once in place it is expected that hospital staff will network with local physicians and local public health nursing as well as with the local part C Family Support networks and IEIC who will assist the family and develop an IFSP to serve the child. Presentations have been made to many public health nurses through Part C Follow Along Program for infants and toddlers and it is anticipated that they will be excellent resources in the community for following children and families. Some communities have pediatric audiology services locally. MDH proposes to contract with the University of Minnesota to assist with improving the quality of services and identifying regions which may be under-served. The survey of audiologists conducted in 1998 also identified the need for hands on training which will be an outcome of the contract with the U of M.
The Minnesota Commission Serving Deaf and Hard of Hearing Persons appointed by the Governor has also and an active role with UNHS. The education and parent committees of the Commission have offered input into developing a state plan and continue to be partners in promoting UNHS. The Commission plans to identify local members of the deaf and hard of hearing or parent community who will make links to hospitals not currently screening to urge them to develop programs.
Minnesota also has a system of Regional Low Incidence Facilitators (RLIF). State education funding comes to them through DCFL to be used for planning for special needs of these children. Together with MDH plans are underway for identifying teams in each region through the RLIF's who will be trained to enhance there skills 50 that they can better meet the needs of deaf and hard of hearing children 0-3. This has been identified as an unmet need in a survey of educators. MDH UNHS staff will participate in the trainings including Part C and genetics.
Regional networking with consumer groups will be facilitated by the existence of 8 state Regional Service Centers who serve deaf and hard of hearing people statewide. Supported through the Minnesota Department of Human Services (DHS) the programs offer equipment loans, information, technical assistance and a variety of services to consumers and families. They also serve on the Quad Agency to promote state level interagency efforts to meet the needs of deaf and hard of hearing.
Minnesota has also been part of the Marion Down's National Center for Infant Hearing national project. This has afforded staff training and technical assistance. Minnesota has benefited from onsite visits and presentations during the past 2 years from the grant as well as assistance with the needs assessment surveys of hospitals, audiologists and educators. The MDH staff working with UNHS have been delegates to DSHPSHWA at a national level. DSHPSHWA offers strong support for UNHS and will continue to play a role as data management systems are developed at a national level. Minnesota hopes to create, through the grant some links that will eventually feed data into this system being designed by CDC.
4.2.6 Needs Assessment
As part of the state's participation in the Colorado grant, Minnesota conducted needs assessment surveys of hospitals, audiologists and educator. These data have assisted the state in identifying existing resources and strengths as well as unmet needs. Of the 120 surveys sent to hospitals, 108 were returned. These data clearly indicated a strong interest in UNHS, but need for more information and education and time to implement programs. Hospital staff indicated strong links with the child's family physician, and some knowledge of other resources. At that time only 11 hospitals had UNHS programs. This number has doubled in 2 years. The needs of urban and rural hospitals have also been shown to be different and we need to assist communities in establishing partnerships to develop programs in small outstate areas with low numbers of births. These hospitals may also need assistance with identifying dollars for purchase of equipment This will also be explored through the grant With the assistance of the Minnesota Hospital and Health Care Partnership, two seminars were help for hospital staff. Needs assessments will be helpful to identify ongoing needs related to UNHS.
Response from the audiologic community was also strong. A summary of these data suggest that as expected, they are not seeing many infants for referrals, and hearing aids are being fitted late (age 18 mo. or greater). Further, there was a strong desire expressed for additional training in testing techniques including hand's on experience and working with infants and their families. Audiologists tended to strongly link with the child's medical home and work with the family physician. Links were also being made with local IEIC teams for planning special education services. Teachers express a need for education to enhance skills in working with infants and their families. Staff have had significant experience working with toddlers, but very limited work with infants. Audiologists also identified a need for protocols. Screening, amplification and assessment protocols have been developed by MDH with a team of statewide audiologists. Additional training is needed with audiologists regarding the protocols. (Protocols are not included in Appendices due to limited pages.)
The surveys clearly identify the need to expand the numbers of hospitals with UNHS programs. In addition to working with hospitals and maintaining contact with them through grand rounds presentations, and information and technical assistance and assisting with developing UNHS programs, a public information campaign will be developed to increase the demand for UNHS. Focus groups will be utilized to identify the information needs of the public and effective materials.
A variety of methods were reported for tracking infants. Through the pilot project with electronic birth certificates with 5-7 hospitals information will be gathered on how we can enhance referrals to local tracking and follow-up agencies and also how we might better follow infants at risk for progressive or late identified hearing loss. The later group is not being well served currently. More than half of the hospitals are using computer tracking systems. A barrier to data transfer may be that these systems may not be compatible with the MDH system. This may require some investment of time and dollars.
The surveys identified the need for education and training at all profession levels. To date several trainings seminars were developed and presented on successful strategies to educators, and audiologists and grand rounds presentations for physicians and nurses. In addition presentations to perinatal nurses have been well received. Evaluations of these presentations has been positives and demand for additional presentations has increased, particularly "hands on" activities. Distance learning will also be explored, given the fact that Minnesota has the capability to link with each county site. This may be an appropriate venue for nationally known speaker. In cooperation with DCFL regional teams will be identified and trained in a "train the trainer" model which has been successful in Minnesota for other disability groups. DCFL has targeted some fiscal resources to provide this training in year 2000. MDH will assist with the planning and presentations. These will serve as regional experts and will have the responsibility to train others in their region. Evaluations will be conducted of each presentation to assist with identification of additional training needs. Staff from MDH, DCFL and DHS on the UNHS team will offer in-kind services far much of the training and will utili2C the strong base of in-state presenters when feasible.
Local public health nurses have successfully followed infants referred through the birth certificate reporting of children who failed metabolic screening. Their assistance will be garnered to follow infants who fail hearing screening through a similar system. Additional training will be needed to discuss utilizing community, state and regional links. MDH will take a leadership role with FAP staff assisting in making connections to local agencies.
Parents and professionals have reported an ongoing concern for lack of payment mechanisms not only for screening, but for payment for needed amplification equipment Efforts have been made to enhance the use of the I-800 telephone number in order to increase the use of MSCHN's services. Large hospitals report difficulty in adding an unfunded test for all infants and insurers are unwilling to add the service. Medical Assistance has also been unwilling to add this as a universal screen needed for babies, despite their federal mandate to find children. MDH plans to convene a group of insurers and MA staff to focus on payment for screening, as well as, inclusion of hearing aids as a covered benefit in insurance plans. Staff from the Minnesota Commission for Deaf and Hard of Hearing Citizens will be asked to assist because payment for hearing aids is a stated priority for the commission.
The grant proposes to utilizes existing agencies and systems and to enhance and refine them. MDH, DCFL and DHS will continue to play major leadership roles in execution of the grant activities. The team will continue to update the goals established in the voluntary plan and to assist in planning training and information activities. To assist with leadership, the advisory committee will be established and have a task of assisting with monitoring the grant and progress toward meeting unmet needs. MSCHN and Part C will offer in-kind services in assisting with the enhancement and refinement of community partners and creating the systems change needed to meet needs for the identified children. Part C will have an ongoing role with the refinement of family support networks and IEIC services. Staff genetic counselor will also provide in-kind services to assist in training and education.
Minnesota plans to utilize the technical assistance from 'the Colorado project as long as it is available. Training for the regional teams is planned for summer 2000 with 1-2 of their staff participating. Grant staff will also be presenters at the conference.
4.2.7 Collaboration and Coordination:
MDH has existing agreements with several agencies as discussed previously. This project will propose to enhance programs for children who are identified as deaf or hard of hearing through these existing collaborative agreements. DCFL, DHS (MA Deaf Services ) MCHSN, Part C ( FAP, IEIC, Family Support Networks, Quad Agency as described previously will be major partners. (See Appendix L Letters of Support). (Additional letters of support were received but not included due to page constraints but are available on request.) MDH , DCFL and DHS have made significant commitments of staff time to date to promote UNHS and to achieve full implementation of UNHS. Staff from these agencies will meet monthly to review progress, plan and evaluate strategies and to identify unmet needs and strategies to address these. The Quad Agency also meets monthly and has UNHS as a priority.
The grant will propose to enhance and refine the informal collaboration with the Minnesota Commission for Deaf and Hard of Hearing Citizens (MCDHH). MCDHH is a strong link to family and consumer groups through their formal network. MCDHH has agreed to further explore how they might refine their structure to create links in the local community to promote UNHS. Part C will continue to support the 1-800 number located within MSCHN. Staff will work in consort with MDH staff to evaluate the link and to enhance and improve the ability to serve as a resource for families of the infants proposed to be identified in the future.
MDH will convene a multi-disciplinary advisory group including parents and consumers to assist with overseeing the grant activities. The group will also assist with revising and refining the plan to address unmet needs and successes. The grant also proposes to convene a group of health insurance providers and Medical Assistance staff to address unmet needs as noted in 4.2.6.
The grant proposes to create a contractual partnership with the University of Minnesota (U of M) Audiology Faculty. (See Appendix I Memorandum of Agreement). The U of M will conduct needs assessments and provide education and training with a focus on hands on training and develop a team to offer cross-disciplinary training to students and professionals. The team will be composed of staff from audiology) deaf education, nursing, and social services at a minimum. The contract will also cover a needs assessment to establish a hearing aid leaner bank practical to meet needs of a segment of the infant population.
MDH plans in collaboration with Childbirth educators to enhance training and to include some discussion on UNHS in message to parents. MDH will assist in the design and development of materials for the childbirth educators through a private contractor to assist with public awareness campaign materials.
4.2.8 Goals and Objectives
Overall Goal of the project is to screen all babies for hearing loss prior to hospital discharge, coordinate with the child's medical home and family support network to assure audiologic- evaluation by 3 months of age and enrollment in appropriate early intervention program by 6 months of age. In order to accomplish this goal Minnesota plans to focus on three areas: public awareness, information and training and tracking and follow-up.
Goal I: Establish coordination of proposed UNHS project and activities.
Objective I. Identify project co-coordinators and their roles by 4-1-00
Activity: Assign Patricia Rice, MDH .6 FTE and Kristen McDaniels, U of M .4 FTE
(See Appendix K Job Description -UNHS Project Co-Coordinator)
Objective 2: Hire intern to work with project coordinators (9/00)
Objective 3. Establish and convene advisory committee by 9-1-00.
Activity A: Identify and contact key stakeholders, including parents and consumers and send letters of invitation to meeting.
Activity B: Present current status of UNHS in Minnesota.
Activity C: Present plans for further implementation and refinement
Activity D: Identify and discuss roles and responsibilities of committee.
Goal II: Increase the number of hospitals with quality UNHS programs and numbers of infants screened to 90%.
Objective 1. Increase to 50% by 4/31/00 the number of newborns/infants screened for hearing loss at birth and assure quality of testing, 85% by 12/31/00 and 95% by 12/31/01.
Activity A: Develop communication tools for hospitals, including newsletters, e-mail, internet sites.
Activity B: Identify key UNHS coordinator in each hospital.
Activity C: Collaborate with MCDHH and RSCs to provide culturally appropriate guidance to hospitals and communities in developing a UNHS program.
Activity D: Convene representatives from insurance companies, HMOs, and state medical assistance programs regarding payment for UNHS by 8-1-00
Objective 2. Develop and implement a quality assurance evaluation plan for screening by 8-1-00.
Activity A: Assure that screening is completed using recommended protocols which delineate staff, equipment, diagnostic and site needs.
Activity B: Develop a plan for random site visits and other observation methods to evaluate program quality and effectiveness.
Goal III. Increase public (consumers and providers) knowledge of and demand for UNHS.
Objective 1. Assess and design initial public information program from 4-1-00 to 3-1-01.
Activity A: Identify contractor to conduct focus groups to design, evaluate, and produce materials by 7-1-00.
Activity B: Completion of 1st wave of focus groups.
Activity C: Identify contractor for designing art work to accompany key messages.
Activity D: Completion of2nd wave of focus groups to finalize key messages and artwork.
Activity E: Final artwork design(s)
Activity F: Develop RTP to design display board for state and national presentations by 11-1-2000.
Activity G: Distribute materials state wide to targeted groups (WIC, childbirth education classes, prenatal clinics, community centers, and MCSHN, Title V Clinics) by 4-1-01
Activity H: Reprinting and redistribution of materials in years three and four of grant period
Activity I: Ongoing sharing of public information activity results with Advisory Committee; beginning 3/1/01.
Objective 2. Develop a variety of additional venues for information distribution.
Activity A: Identify a contractor develop additional UNHS promotional materials for screening, assessment, intervention and follow up by 7-01-01, including video and audio formats.
Activity B: Identify and assess culturally appropriate PSAs to utilize in media campaign by 11-1-02.
Activity C: Publish periodic articles and updates in state medical, audiological, educational and consumer journals throughout the grand period.
Objective 3. Develop MDH - UNHS web site by 8-1-00.
Activity A: Develop RFP for web site design and maintenance.
Activity B: Evaluate materials with co-coordinators and Advisory Committee.
Objective 4. Design and implement an evaluation plan for public information materials, including purposive sampling at clinics referenced above, by 12-30-01.
Activity A: Design of evaluation plan
Activity B: Implementation of evaluation plan 6 months and 12 months after first distribution (4/01).
Goal IV. 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 and U of M to access all regions of the state, to enhance screening) assessing, diagnosing and providing effective early intervention for deaf and hard of hearing children and their families.
Objective I: Increase to at least four the number of lectures about UNHS through professional school education and clerkship beginning 10-1-00.
Activity A: Conduct needs assessment, and develop, implement and evaluate lectures and clerkships at the University of Minnesota Medical School Department of Otolaryngology and other departments for audiology students, medical students, and resident physicians, beginning 6-1-00. (See Appendix K Job Descriptions - Clinical Educators).
Activity B: Collaborate with other departments, including Communication Disorders and Deaf Education, and other agencies for the purpose of developing and implementing a multi-disciplinary education program, including hands-on experiences for providers of services for infants and families beginning 6-1-00.
Activity C: Participate quarterly with co-coordinator's in Grand Rounds presentations to pediatrics, neonatology, and family practice and general medicine residents at hospitals around the state, especially in identified regional audiologic centers/areas, beginning 10-1-00.
Objective 2: Increase to at least four per year the number of continuing education opportunities about UNHS, beginning 7-1-00.
Activity A: Provide at least 2 seminars around the state to physicians, nurses, audiologists, and educators to raise awareness of UNHS, improve skills in screening, assessment and intervention, and offer resources for professionals and families by 11-1-00-3-1-04.
Activity B: Provide at least 2 hands-on workshops at various locations and/or do presentations at state, regional and national conferences to enhance skills of clinical and educational audiologists to assure utilization of MN protocols, technologies and techniques by 2-1-01-3-31-04.
Objective 3: At least 90% of babies referred from screening will receive a comprehensive diagnostic audiology evaluation by three months of age by an audiologist skilled in assessing infants, including appropriate communication and referral to local primary care physicians, family support networks and IEICs, by 12-30-03.
Activity A: Assess current statewide capacity to offer diagnostic and rehabilitative audiology services, and expand capacity in unserved areas through training/education, so that all regions of the state are served by qualified audiologists by 6-1-01.
Activity B: Hold evaluation/training sessions to assess providers' pre- and post- training diagnostic and rehabilitative competencies by 10-1-01-1-1-04.
Activity C: Determine mechanisms for sharing data and making appropriate referrals including informed consent and confidentiality by 12-1-00.
Objective 4: At least 90% of babies with confirmed bearing loss will be fit by six months of age as appropriate with amplification or other assistive technologies, by a bearing instrument dispenser skilled in fitting infants by 12-20-03.
Activity A: Conduct needs assessment to identify current gaps in services related to amplification fitting, working collaboratively with the UMN and the Quad-agency, by 8-1-01.
Activity B: Establish and maintain a "Hearing Aid Loaner Bank" to assure expedient fitting with appropriate assistive technologies while financial issues are determined, or while candidacy for cochlear implantation is explored, beginning 12-1-01.
Objective 5: At least 90% of babies with confirmed hearing loss will receive appropriate early intervention services by six months of age within the context of their medical home, by 12-30-03.
Activity A: Assess and refine the referral and. communication system between audiologists, physicians, nurses, and educators so that infants with bearing loss and their families receive timely services in the context of their medical home in their communities.
Activity B: Continue collaboration at the state level with DCFL, DHS, DBS, and MDH staff in order to plan, develop and implement training for regional teams to refine skills in delivering appropriate services to deaf and hard of hearing infants and their families, using a "train-the-trainer model". Partner with consumers and other state agencies to assure cultural competencies) beginning 7-1-00.
Activity C: Collaborate with state and regional medical associations of pediatricians, family and general practitioners, geneticists, obstetricians and gynecologists, and otolaryngologists to assure that medical providers state wide are knowledgeable about appropriate early intervention services, beginning 6-1-01.
Objective 6. Design and implement throughout the grant period an evaluation plan for all training and education objectives and activities, including parent satisfaction surveys' by 4-1-01 for public information) workshop evaluation, pre-and post-training/education test, etc.
Goal V. Integrate genetic services with follow up for babies identified by universal newborn hearing screening and confirmed bearing loss, because 60-70% of non-syndromal hearing loss is genetic.
Objective 1: At least 95% of all babies with confirmed hearing loss will be informed of the availability of a diagnostic evaluation by a medical geneticist certified by the American College of Medical Genetics and for genetic counseling by a genetic counselor certified by the American Board of Genetic Counseling, by 12-30-04.
Activity A: Provide educational materials on the genetics of hearing loss and the purpose and goals of a genetics evaluation and referral information to all medical home providers and all parents or legal guardians of babies with confirmed hearing loss.
Objective 2: In collaboration with Quad-agency and UMN, provide educational workshops (including Grand Rounds) around the state to care providers to raise awareness about the genetics of hearing loss, the role and purpose of a genetics evaluation for individuals with hearing loss, the resources available to families and the process of referring for genetics evaluation and counseling, beginning 7-1-00.
Objective 3: Design and implement an evaluation plan for genetic services including statistics on genetic referral rates, consumer and provider surveys, by 12-30-01.
Goal VI. Expand and refine existing tracking and follow-up linkages with current MCSHN, Part C, Interagency Early Intervention Committees (IEIC), regional low incidence facilitation (RLIFs) and DCFL tracking systems to allow for babies to be screened, identified and followed through a seamless sustainable family-friendly health care system.
Objective 1: Design and develop a plan by 12-30-00, and implement in collaboration with MDH Center for Health Statistics, supplementary electronic birth certificate coding and informed consents for pilot testing in 5-7 hospitals with current UNHS programs, by 4-1-01 with full-implementation by 4-1-03.
Activity A: Identify markers for inclusion with birth certificate coding, including informed consents.
Activity B: Sign memoranda of agreement with 5-7 hospitals to participate in pilot testing.
Activity C: Monitor and evaluate pilot birth certificate tracking program, including immediate referral to local community public health agency, medical home, and PAP.
Objective 2: Collaborate with the FAR to refine existing data collection system to include markers for infants screened in UNHS programs and infants with risk factors for emergent/progressive hearing loss.
Activity A: Train local public health nurses and the medical home regarding interpretation of data markers and UNHS protocols to assist in referral and follow up.
Activity B: Increase the knowledge and use of Title V programs and the 1-800 telephone number by local providers.
Objective 3: Increase the number of deaf and hard of hearing children, 0-3 years, receiving early intervention services and family support through their local IEICs, from the current number of 58 children to 80 by 3-1-01 to 120 by 3-1-02, to 160 by 3-1-03 and to 80-200 children by 3-1-04.
Activity A: Collect annual DCFL child count data and review with Quad-agency representatives and the Advisory Committee, year-end each year of grant period.
Activity B: Refine and expand the DCFL child count system, so that all children with hearing loss including those with multiple disabilities are identified as deaf and hard of hearing, by 3/04.
Goal VII. Assure that fiscal and program requirements of grant funders are met.
Objective 1: Participate in at least one trip annually to Washington DC 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: Project Director submits all required reporting documents on a timely basis to grant funders.
4.2.9 Required Resources
The proposed grant is requesting funds to hire and provide travel and clerical support to .6 FTE co-coordinator audiologist to manage the activities of the grant and to enhance the capacity of MDH to accomplish the goals and objectives identified in the proposal. Travel funds will support the required annual review in Washington, D.C. and travel to hospital sites for technical assistance and program. As identified in the Budget Justification additional funding is requested to support major activities in the following areas: convening advisory committee, internships, public information, training and education, bearing aid leaner bank, and tracking and follow-up.
Project management will be under Penny Hatcher, Supervisor m the MCH Section who reports to the MCH Section Manager. The MCH Section manager reports directly to the Director, Division of Family Health and Title V. Dr. Hatcher will be accountable for assuring the successful outcomes of the project as well as compliance with applicable federal requirements.
4.2.10 Project Methodology
The overall project model for addressing the proposed UNHS goals and objectives builds on existing systems and activities; strengthening and expanding partnerships among agencies, organizations and consumer groups. Various methods will be used such as a public information campaign and collaborative efforts organizations such as the (sic)
U of M will develop sustainable training/education programs for multidisciplinary providers, including train-the-trainer models. Current tracking systems for children special health needs such as birth certificate data and the FAP will include UNHS data. Other existing tracking and family support systems (e.g., IEIC) will assure that families are supported from the screening process to early intervention and follow-up. (For more specific methods, see Tables and Charts, Table A. Project Activities Time Allocation Table and Table B. Personnel Allocation Chart.)
Parental involvement is assured through, the Advisory Committee and liaisons with other consumer groups. (See Appendix L. Letters of Support). Parent/consumers will also be involved in focus groups activities which serve as a basis for the public information campaign and subsequent evaluations. Continued technical assistance from the MDNC, including their parent advisor will provide guidance to program staff with methodology and evaluation.
4.2.11 Plan for Evaluation
Overall program evaluation and monitoring will be a continuous process through the four year grant cycle with ongoing focus on measuring: the increasing numbers of newborns screened; the number and quality of training opportunities for physicians, nurses, audiologists, educators and other professionals; greater awareness of UNHS among the general public and providers; the age of identification and intervention; and ability of new (birth certificate) and existing data systems to track and follow-up deaf and hard of infants and their families. In addition to documenting the composition of the Advisory Committee and their activities, project staff will involve the committee in evaluating various aspects of the proposed program. (For more specific detail, see Attachment .. Project Activities Time Allocation Table).
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 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.
It is expected that communities will be impacted by enhanced ability to serve these children appropriately in their local areas and the medical/audiologic system will be mobilized to respond in a more timely fashion to meet the needs of these identified children. MDH and MCSHN Title V programs will expand their capacity to serve the infant population which they have previously not had access to due to previous late identification of hearing loss. Strengthened interagency and regional collaboration will offer enhanced technical assistance and services to providers and consumers as determined by indicators of culturally appropriate and effective family support, e.g., satisfaction surveys, linkages with appropriate agencies/services, etc..
Evaluation protocols will vary with outcomes. Annual hospital reports are planned and when established, the birth certificate UNHS date is available electronically within two weeks but will be reviewed biannually. The FAP' s reporting system is semi-annually. Evaluation of the public information campaign impact is planned for two intervals after initial launching; within 6 months and at 12 months. Each training/education activity will be evaluated at the time of implementation and with results submitted to program co-coordinators far bi-annual reporting and recommendations for revisions. Enrollment of deaf/hard of hearing infants and children is reported by DCFL on an annual basis and available to UNHS program co-coordinators.