Project Title: Universal Newborn Hearing Screening Program
Project Number: CFDA # 93.251
Project Director: Nancy R. Bullock, RN, MPH Phone: (804) 786-3693
Organization Name: Virginia Department of Health, Division of Child and Adolescent Health
Address: P. O. Box 2448, Room 137
Richmond, VA 23218-2448
Contact Person: Pat T. Dewey, M.Ed.
Phone: (804) 786-1964
Fax: (804) 371-6031
E-mail Address: gdewevna.vdh.state.va.us
Project Period: From: March 31, 2001 to March 30, 2005 4 years
The entity responsible for this project is the Virginia Department of Health (VDH), Division of Child and Adolescent Health (DCAH), the state's Title V program. The VDH, DCAH, under the Children with Special Health Care Needs Program, has maintained a statewide, legislatively mandated program designed to identify and track children determined to be at-risk for hearing loss since 1987. In 1998, the Code of Virginia was amended; it now requires that all hospitals with birthing facilities screen the hearing of all newborns prior to discharge, provide the results to both parent and primary medical care provider (PMCP) and report to the VDH. The mandate did not include funding to develop or implement the Universal Newborn Hearing Screening (UNHS) Program.
Purpose: The primary purpose of this project is to achieve full implementation of the UNHS program by the end of year four. This means that: 100% of all newborns will be screened prior to discharge or within the first month of life; 100% of infants will be referred to and receive audiological follow-up by three months of age; and, those with hearing loss will be enrolled in appropriate intervention by six months of age. The project proposes to achieve these goals by: developing and implementing training for hospitals, audiologists, PMCP and early intervention providers; targeting Virginia infants born outside hospitals and in border facilities; direct contact with families and PMCP for children needing follow-up; and, establishing a program evaluation plan that includes comprehensive data analysis and production of quality data reports.
Challenges: Hospitals, physicians, audiologists and early intervention providers in Virginia lack the information and skills necessary to implement and sustain a successful statewide program for universal newborn hearing screening and intervention. All children are not receiving timely follow-up. Virginia's program needs to develop and implement a plan for program evaluation that includes timely analysis and reporting of annual data to all customers.
Goals and Objectives: The goals and objectives of this four-year project are:
G 1: 100% of newborns in Virginia will be screened prior to discharge or within the first month of life, in such a manner as to minimize missed and refer rates.
OBJ 1: All hospitals mandated to screen will have a minimum of two staff persons knowledgeable about screening and referral protocols.
OBJ 2: All infants born in the three military hospitals will be screened and tracked.
OBJ 3: All parents of infants born outside hospitals will know where to have screening done. OBJ 4: 95% of resident infants born in border hospitals will be tracked and referred.
G 2: 100% of infants needing follow-up will be referred to and receive audiological follow-up by three months of age and intervention by six months of age.
OBJ 1: At least 75% of all PMCP and staff from each region will be trained in order to increase awareness and understanding of universal newborn hearing
OBJ 2: Establish and implement mechanisms for follow-up and intervention for all infants.
G 3: 100% of infants who are referred from screening will receive follow-up audiological evaluation at an approved center and by an audiologist trained in services to young children.
OBJ.1: There will be at least one trained audiologist per planning district who can provide diagnostic follow-up and select/fit appropriate amplification on infants and young children.
OBJ 2: There will be at least one center per planning district approved to provide audiological services to infants and young children.
G 4: 100% of children with hearing loss will be enrolled in appropriate quality early intervention, including family-to-family support by six months of age.
OBJ 1: At least 95% of early intervention service providers will receive training about early intervention that is specific to infants and children with hearing loss.
OBJ 2: Parent letters and information will be available in three additional languages.
OBJ 3: 100% of children with hearing loss and their families will be connected to family support. OBJ 4: At least 95% of children with hearing loss and their families will report access to full range of communication choices and interventions.
G 5: VDH will conduct timely analysis and reporting of program data in all years.
OBJ l: VDH will produce quality comprehensive data reports and program evaluation quarterly and yearly.
Methodology: VDH will contract with outside entities to develop and carry out training for hospital staff, audiologists and PMCP. VDH will collaborate with the Part C system of IDEA and others to develop and implement ongoing training for early intervention providers. VDH will hire a Surveillance and Evaluation Coordinator to be responsible for conducting parent, customer and insurance surveys, assuring effective evaluation of training and the timely analysis and reporting of program data. VDH will hire a Follow-up Coordinator to be responsible for developing and implementing mechanisms to assure follow-up and intervention for all infants including PMCP contact, local care coordination, and family-to-family support. VDH will establish funding to assist with purchase of diagnostic audiological equipment and will translate materials for parents into other languages. These activities will assure a UNHS program that: covers 100% of Virginia resident births; provides for a network of trained and informed providers; assures the availability of timely and appropriate quality services for children and families; includes a capacity for ongoing training; provides data reports to all customers; and includes yearly program evaluation.
Evaluation: This project will measure and/or report on: percentage of Virginia newborns screened prior to discharge and within one month of age; percentage of infants referred for follow-up; competence of participants in all major concepts presented during training; development of training models and plans to assure ongoing training; age of infants at follow-up, diagnosis, referral and intervention; availability of appropriate follow-up audiological services; availability of trained qualified providers; mechanisms for tracking and contact for all infants including those lost to follow-up; percentage of families connected with care coordination and family-to-family support; availability of appropriate early intervention services; and, results of surveys and needs assessments conducted.
Text of Annotation: The purpose of this project is to achieve full implementation of the Universal Newborn Hearing Screening (UNHS) program in Virginia by March 2005. Hospitals, primary medical care providers (PMCP), audiologists and early intervention providers lack the information and skills necessary to implement and sustain a statewide program for UNHS. The project will develop and implement training for hospital staff, audiologists, PMCP and early intervention providers and will establish a plan for comprehensive data analysis and production of quality data reports. One hundred percent of newborns in Virginia will be screened prior to discharge. All hospitals mandated to screen will have a minimum of two staff persons knowledgeable about screening and referral protocols by end of year two and all infants born in the three military hospitals will be screened prior to discharge and tracked. By end of year four, 100% of infants needing follow-up and intervention will be referred for audiological follow-up before three months of age and enrolled in intervention by six months of age. At least 75% of all PMCP will attend training in order to increase awareness and understanding of universal newborn hearing screening and mechanisms for tracking infants lost to follow-up will be established. By the end of year four, 100% of infants who are referred from screening will receive follow-up audiological evaluation by three months of age at an approved center. There will be at least one trained audiologist per planning district who can provide diagnostic follow-up on infants and select/fit appropriate amplification on infants and young children; a funding source to assist audiological service providers with purchase of otoacoustic emission equipment to cover underserved areas will be established. By the end of year four, 100% of children with hearing loss will be enrolled in appropriate intervention by six months of age. At least 95% of early intervention service providers will receive training about intervention for hearing loss including documentation of developmental profiles and at least 95% of children with hearing loss and their families will report access to full range of communication choices and interventions. Finally, VDH will produce quality comprehensive data reports and program evaluation yearly. All models for training will be available for use to continue training as needed.
Key Words: children with special health care needs, early intervention, infants, provider training, universal newborn hearing screening
PROJECT NARRATIVE
1. Purpose of the project:
In 1998 a law was passed in Virginia requiring that as of July 1, 2000, all hospitals with newborn nurseries and all hospitals with neonatal intensive care services were required to screen all newborns before discharge and report results to parents, primary medical care providers (PMCP) and Virginia Department of Health (VDH). The legislation required VDH to implement and administer the Universal Newborn Hearing Screening (UNHS) program but did not include funding to support development. Limited funding was secured from state Title V as a result of redefining priorities. In 1999 there were 93,289 live births in Virginia. Based on the reported incidence of congenital hearing loss (2-6/1000 live births), we can expect to identify 186 to 559 newborns each year with hearing loss in Virginia. The major goals for Virginia's program are: 1) 100% of newborns screened for hearing loss prior to discharge or within the first month of life; 2) hearing loss identified by three months of age; and, 3) those with hearing loss enrolled in intervention by six months of age. As of July 2000, 70% of hospital births in Virginia were being screened prior to discharge. Births at the three military hospitals, at home, in birthing centers and to Virginia residents in bordering states and District of Columbia are not covered by the mandate. Based on program information, there are at least six planning districts (of 22) in the state with inadequate facilities for audiological follow-up and assessment. According to Virginia Babies Can't Waif, Part C of the Individuals with Disabilities Education Act (Part C), there is a lack of qualified early intervention providers for newly identified infants and toddlers with hearing loss and their families. According to the Virginia Chapter of the American Academy of Pediatrics (AAP), there is a significant gap in physician awareness about newborn hearing screening and follow-up. The importance of training for persons performing newborn hearing screening has been well documented. Available state Title V funding covers two staff, database maintenance, brochures, office expenses and in-state travel. Funding from this grant will assist VDH to develop and implement training for: 1) hospital staff to increase knowledge about screening protocols and information to parents; 2) audiologists to increase availability and quality of hearing and hearing aid services and increase knowledge of intervention referral and parent counseling, including provision of unbiased treatment choices information; 3) PMCP to increase knowledge about the early identification of hearing loss, timely follow-up, medical assessment for hearing loss and intervention referral; and, 4) early intervention service providers, in collaboration with Part C and others, to increase knowledge about hearing loss, amplification and communication choices and develop statewide intervention models specific to hearing loss. This grant will assist VDH to: 1) provide necessary equipment for audiological service providers to cover underserved areas; 2) reach out to military and state border hospitals to screen, report and refer newborns from newborn hearing screening programs; 3) reach out to families choosing birthing centers or home births regarding having their newborns screened; and, 4) translate parent letters and information. Funds are needed for training, equipment and two staff (one full time position, one wage) responsible for follow-up, management of the database, program evaluation and data reports.
The benefits of this project include: an early identification program that covers 100% of all Virginia births; informed physicians providing a medical home that assures timely follow-up for newborn hearing screening, health care guidance and preventive care for all children; a network of trained audiologists to assure follow-up and support for all infants and families; a network of trained early intervention providers to assure that children with congenital hearing loss and their families receive timely, appropriate services that are of their choosing and meet the unique needs of each family; children with hearing loss and their families linked to community support systems including parent-to-parent network; and, a sustainable statewide UNHS program that assures follow-up, produces annual reports and program evaluation, and that documents effective strategies to assure early identification and intervention.
2. Organizational experience and capacity:
2.1 Accomplishments: VDH, under the Children with Special Health Care Needs Program (CSHCN) in the Division of Child and Adolescent Health (DCAH) and the Office of Family Health Services (OFHS), has maintained a program of statewide identification and tracking of children identified as at-risk for hearing loss (Virginia Hearing Impairment Identification and Monitoring System) since 1987. Since the mandated legislation for universal newborn hearing screening was passed in the spring of 1998, VDH has accomplished the following:
2.2 Description of current program: As of July 1, 2000, all hospitals with newborn nurseries are required to screen all newborns prior to discharge and report to VDH. Hospitals are also required to inform the parent and PMCP in writing about the risk status and/or screening results. Parental consent for screening is not needed; however, the Code of Virginia allows for parents to refuse based on "their bona fide religious convictions." A new Web-based database and reporting system (TONE-Test Our Newborns' Ears) was developed under contract by the Center for Pediatric Research at Eastern Virginia Medical School. All hospitals are now using this system to report screening results on individual newborns. Each hospital logs onto the secure site to report and review their facility's data. Hospitals do not have access to any other facility's data. In addition to reporting to VDH, each facility can print a list of audiological and early intervention referral sources to give to parents, view follow-up data on newborns entered from their facility and generate monthly reports. VDH is responsible for tracking of infants in need of follow-up and managing the database. Using the administrative module of the database, VDH tracks the child's followup status, generates letters to parents, enters follow-up data reported by audiologists and physicians, monitors the hospital reporting and referral rates, and creates reports. VDH currently sends a letter to the parent of each child meeting one or more of the following: 1) referred from hospital screening; 2) not screened by hospital; and, 3) at risk for progressive or delayed-onset hearing loss in order to assure that parents have been informed by hospital staff and that they have all the information they need to make decisions regarding follow-up. VDH also: 1) sends reminder letters to parents of children with no reported follow-up after four months of age; and, 2) sends a letter to the parents of any child who is identified with hearing loss, to assure that they have access to all the information they need. The letter informs them about the availability of the CSHCN program and Part C services. There is no direct contact between the UNHS program and the PMCP. Parents and the child's PMCP are responsible for follow-up under the current process. The program depends on the PMCP, audiologist, and parent to send in the reports. There, is no direct referral system between the UNHS program and CSHCN services, nor is there a direct referral to Part C services. The Speech and Hearing Services Administrator is the program manager for all activities. A Program Support Technician is responsible for data entry, mailings, customer service regarding the database, as well as phone calls from hospitals, families and providers.
2.3. CSHCN Program: Virginia has a strong Maternal and Child Health Bureau (MCHB) Title V funded CSHCN program that includes services for children with hearing loss. It currently provides direct services, including medical specialty care and purchase of amplification for financially eligible children. This program collaborated with parents, state agencies, organizations, and a statewide CSHCN advisory task force to pursue new directions for the CSHCN service delivery system. In 1998, VDH commissioned a consultant, Health Systems Research, Inc. to complete a study of Virginia's system. The study and its recommendations were completed in 1999 utilizing technical assistance from the federal MCHB and other states' CSHCN Programs (see Appendix F). VDH, as part of its mission to develop and assure high quality services to CSHCN and their families, is currently working to implement these recommendations. When implemented, new resources developed for CSHCN will be of significant benefit to families of children with hearing loss including a parent-to-parent network and regional coordinators providing information and referral and care coordination in six regions. CSHCN staff also worked with the Virginia Department of Medical Assistance Services (Medicaid) to establish procedures and networks for purchase of hearing aids after the new Early Periodic Screening, Diagnosis and Treatment (EPSDT) mandates required that hearing aids be covered. DCAH staff continues to provide input to Medicaid regarding hearing screening guidelines under EPSDT, adequate reimbursement for audiological services and hearing aids, and data sharing.
The Project Director (PD) for the proposed project is Nancy Bullock, R.N., M.P.H., the CSHCN Director. She has 33 years' experience in public health with most of her career devoted to services for CSHCN. She has had oversight for the Virginia hearing project since 1991 when she became the CSHCN Director. As an active member of the Association of Maternal and Child Health Programs, she has presented at several annual meetings and is a mentor for new CSHCN directors. The Project Coordinator (PC) is Pat Dewey, M.Ed., the Speech and Hearing Services Administrator, who is responsible for both the newborn hearing screening program and the coordination of speech and hearing services within the programs for CSHCN. She has successfully overseen an effective and smooth transition to UNHS in Virginia. For twenty-six years, she has been a member of the Directors of Speech and Hearing Programs in State Health and Welfare Agencies, a national group of professionals with responsibilities for statewide programs for speech and hearing including those under Title V and the newborn hearing screening programs; she is currently the President. The PC also participated on the work group that developed data elements for the Early Hearing Detection and Intervention (EHDI) National Database at the Centers for Disease Control and Prevention (CDC). In addition to being a regular participant in the bi-monthly CDC EHDI teleconferences, she has made two presentations during teleconferences on Virginia's program.
The Division of Women's and Infants' Health (also under OFHS) through its work with the federally-funded Community Health Centers, Genetics Program, Resource Mothers Programs, and Healthy Start Programs has and will continue to support efforts to disseminate information to PMCP and families.
Virginia was one of 17 states that participated with the Marion Downs National Center for Infant Hearing (MDNC) in their MCHB-supported technical assistance (TA) project for UNHS. The strong focus on planning and systems development provided the framework for VDH's efforts. VDH also collaborates with the National Center for Hearing Assessment and Management (NCHAM) at Utah State University (the current MCHB-supported TA project) to assure that up-to-date information about Virginia's program is maintained on their Web site and that Virginia's hospitals and audiologists are aware of the available assistance and information.
DCAH's and VDH's experience and capability to meet the goals and objectives of this project include the following: Training. DCAH has both direct experience in providing training and experience in working with contractors to provide training.
Evaluation. DCAH has significant experience with evaluation and surveillance. The Director of DCAH, who has an M.P.H. in Biostatistics, was the former Director of Planning and Evaluation of the VDH Division of Maternal and Child Health, and developed evaluation protocols for the Resource Mother and Lead Poisoning Prevention Programs. Technical assistance and consultation in evaluation and surveillance is provided by Kathy Wibberly, Ph.D. and Diane Woolard, Ph.D., respectively. Dr. Wibberly, VDH Office of Health Policy, has to-date provided oversight and consultation to the evaluation of three DCAH programs: Teen Pregnancy Prevention Program, Abstinence Education Initiative, and Virginia Fatherhood Campaign. Dr. Woolard, Director of the VDH Division of Surveillance and Investigation, has provided surveillance and epidemiology consultation to DCAH as it developed surveillance capacity for the lead poisoning prevention program. Drs. Wibberly and Woolard have already provided and will continue to provide technical assistance and consultation to the UNHS program.
Minority health/cultural competency. The Office of Minority Health will provide technical assistance in minority health issues. In concert with the Minority Health Advisory Committee, staff work to improve the health of African-Americans/Blacks, Asian/Pacific Islanders, Native Americans and Hispanics/Latinos in the Commonwealth through policy development and program analysis and to integrate Minority Health into public and private health care systems in Virginia. The VDH MultiCultural Health Task Force will provide advice to assure the incorporation of cultural competence in all services.
3. Administration structure.
The project will be managed in OFHS, DCAH, CSHCN Program. The PD, Nancy Bullock, R.N., M.P.H., is the Director of the CSHCN program. The PC, Pat Dewey, M.Ed., is the Speech and Hearing Services Administrator. The Director of DCAH, Cecilia Barbosa, M.P.H. (Biostatistics), MCRP, provides oversight and technical assistance and assures integration with all V DH programs. The Advisory Committee, appointed by the State Health Commissioner to assist in the design and implementation of the program, includes representatives from partner agencies (Virginia Department for the Deaf and Hard of Hearing [VDDHH], Part C, Department of Education [DOE], Medicaid), professional groups, parents, and persons who are deaf or hard of hearing. Stakeholders and interested parties not represented on the larger committee have been active on the Education and Follow-up Subcommittees and on the Advisory Committee Protocols Task Force. Parents are actively involved and engaged in decision-making, as demonstrated by the fact that the majority of the Advisory Committee Task Force for the Parent Resource Guide were parents. In addition, parents and consumers reviewed drafts of the brochures and Parent Resource Guide.
The CSHCN program has a strong network of audiological service providers with whom it contracts. As many as 50 audiologists statewide have been personally involved with the UNHS program, serving on the Task Force that developed screening and assessment protocols, working with various subcommittees of the Advisory Committee and consulting with hospitals in their localities.
From its inception, Virginia's program has been supported by parent groups and the following entities: the network of 126 local health departments, organized in 35 health districts, in which there are public health nurses responsible for case management and home visiting; the Virginia Hospital and Healthcare Association; Virginia Chapter of the American Academy of Pediatrics; Speech-Language Hearing Association of Virginia; partner agencies and advocacy groups (Virginia Consortium on Deafness, Community Center for the Deaf and Hard of Hearing and Self Help for Hard of Hearing). Support is also reflected in representation on the Advisory Committee. The PC will continue to network with programs in other states and with national-level activities such as the Joint Committee on Infant Hearing and the EHDI program at CDC.
Included in the Appendices are: Organizational charts, #C and membership roster for the Advisory Committee, #F. Descriptions of collaborations with other community, state and national entities are referenced in Sections 2 and 7.
4. Available resources.
The UNHS program budget for fiscal year (FY) 2001 (7/1/2000-6/30/2001) is $115,706. Additional one-time funds ($85,000) are being provided in FY 2001 to meet this year's program needs. At this time we are unsure about the level of funding for next year beyond the $115,706 base.
DCAH recently contracted with the Center for Pediatric Research to develop a centralized electronic system to capture and report data regarding all newborns identified as at-risk beginning at the hospital nursery level. This will include infants identified with certain diseases and conditions reported to VaCARES (congenital anomalies reporting), those with abnormal metabolic screens, newborns reported through the UNHS program, and infants who are at risk for developmental delay. This system will be an expanded version of that developed for the UNHS program and will include linkages with the birth certificate data. Once this, electronic reporting system is implemented various program staff will work to combine the separate program activities into an integrated system. As further commitment to the effort to establish an integrated system, DCAH will also hire a director for the integration project utilizing funds secured from Part C.
VDH staff includes:
5. Identification of target population and service availability.
5.1 Target Population: The target population for UNHS is all children born in Virginia, all children born to Virginia residents in border facilities and their families. In 1999 there were 93,289 live births in Virginia; 4,431 births to Virginia residents occurred out of state (4.7% of the total births to Virginia residents). See Map # 1 (pg. 48) for number and percentage of births by planning district. Grant funds will be used to assure that 100% of these births are screened.
The target population for the training to be supported by this project includes:
5.2 Needs and Challenges:
6. Needs assessment.
7. Collaboration and coordination.
As mentioned in Sections 2 and 5, VDH has collaborated and coordinated with other agencies of the Commonwealth, organizations, consumer groups and parents. There is broad representation on the Advisory Committee, on subcommittees and on task forces for specific projects.
VDH is a partner agency with the lead agency for Part C, the Department of Mental Health, Mental Retardation and Substance Abuse Services. At present, VDH commits .5 FTE staff as liaison to that program. VDH continues to collaborate and coordinate with multiple partners to implement the universal newborn hearing screening program, including: Virginia Hospital and Healthcare Association; Virginia Hospital Research and Education Foundation; Regional Perinatal Coordinating Councils; Speech-Language-Hearing Association of Virginia (SHAV); Medicaid; Virginia Chapter of the American Academy of Pediatrics and the Virginia Pediatric Society; Virginia Society of Otolaryngology, Head and Neck Surgery; Virginia Obstetrics and Gynecology Society; Virginia Academy of Family Physicians; Virginia Association of Health Plans; local health departments and public health nurses; parent groups; Virginia Leadership Excellence in Neurodevelopmental Disabilities (VA LEND), a training program for health professionals funded by SPRANS; Quota Club; MDNC; NCHAM; Together We Can: The Virginia Deafblind Project; statewide Genetic Centers; VIDD; Virginia Interagency Coordinating Councils, state and local; DOE; and, VDDHH.
This project's plan for training of providers is part of a four-way collaboration with Part C, DOE and VDDHH. VDH secured a $100,000 commitment from Part C to develop and provide training for early intervention providers; DOE has committed funding for training of early childhood and special educators; and, VDDHH will provide the needed interpreter services. Funding from this grant will help VDH provide training for hospital staff, PMCP and audiologists and contribute to training for early intervention providers.
8. Goals and Objectives.
The five goals of this project are: 1) 100% of newborns in Virginia will be screened prior to discharge or within one month of age, in such a manner as to minimize missed and refer rates; 2) 100% of infants needing follow-up and/or intervention will be referred to and receive audiological follow-up with diagnosis by three months of age and enrolled in intervention by six months of age; 3) 100% of newborns who are referred from screening will receive follow-up audiological evaluation at an approved center and by an audiologist with training in the provision of services for infants and young children; 4) 100% of children with hearing loss will be enrolled in appropriate quality early intervention of parents' choosing, including family-to-family support and access to information about hearing loss and resources in the families' native language; and, 5) VDH.will conduct timely analysis and reporting of program data in all years. The goals, objectives, activities, and evaluation methodologies are displayed in the Project Activities Time Allocation Table on the following pages.
9. Required resources.
VDH does not have the funds to support full implementation of a UNHS program that can assure follow-up and appropriate services for all infants and provide the necessary program evaluation. In order to accomplish the goals and objectives of this project, funds are requested for a Surveillance and Evaluation Coordinator (SEC); a Follow-up Coordinator (FC); equipment and rent for these positions; contracts for the development and implementation of training programs for hospital staff, audiologists, primary medical care providers and intervention service providers; travel of the PC and PD to meet with MCHB program staff once a year; travel to one national workshop on newborn hearing screening each year for both PC and one other staff; and, purchase of equipment for follow-up sites. Indirect costs are calculated at 8.6 percent, for personnel only. VDH assures that grant funds will be used only for the purposes specified in the application. The PD, the PC, the Grants Specialist and the Business Manager in the OFHS Business Unit will maintain the required fiscal control and accounting procedures.
10. Proiect methodology.
The Project Activities Time Allocation Table on pages 57-73 details the activities to be conducted during this project. These activities will assure a UNHS program that: 1) covers 100% of Virginia births; 2) assures early identification and intervention; 3) provides for a network of trained and informed providers and the availability of appropriate quality services for children and families; 4) includes a capacity for ongoing training; 5) assures that children with hearing loss and their families are linked to community support systems including parent-to-parent network; and, 6) provides ongoing program evaluation and data reports to all customers.
The PD will: 1) provide oversight for the grant by supervising the PC, meeting each month to review progress on reaching the grant's goals, objectives and activities; 2) work with the PC to identify and provide funding for equipment for underserved areas; 3) provide management support necessary for the effective and efficient management of the grant; 4) seek higher management involvement on sensitive issues; and, 5) assure coordination of activities with other CSHCN activities.
The PC will: 1) manage the overall UNHS program; 2) hire, orient and supervise the SEC and the FC; 3) generate the Request for Proposals (RFP) and the contracts for the training programs; 4) manage the training contracts; 5) work with the contractors to approve training plans and materials; 6) work with military hospitals and bordering hospitals to screen, report and refer Virginia newborns; 7) work with the PD to design and implement funding for equipment for underserved areas; 8) continue close collaboration with Part C, DOE, and VDDHH to plan and implement training programs for service providers; 9) work with the FC to manage ongoing informed consent and confidentiality issues; and, 10) work with the SEC to manage ongoing data security issues.
The SEC will: 1) supervise the Program Support Technician and manage the data base; 2) assure the collection, availability, and analysis of quality data; 3) produce data reports for internal and external customers; 4) submit yearly reports to CDC; 5) work with the FC regarding reporting of outcome measures from early intervention; 6) work with the PC to manage ongoing data security issues; 7) conduct ongoing program evaluation; 8) work with contractors to assure effective evaluation of training; and, 9) monitor progress reports on all objectives and activities and provide to PC and PD.
The FC will: 1) develop and implement a plan for direct contact with PMCP regarding screening results for all newborns; 2) develop and implement a plan for direct contact with parent and PMCP for infants with no reported followTup by four months of age, including assurance of referral to medical home; 3) work with CSHCN regional coordinators to assure that children and their families are linked to appropriate services, including parent-to-parent networks, and that those services are accessible, familycentered and culturally competent; 4) work with state and local Part C staff to establish mechanisms for reporting enrollment, service information and developmental outcomes to the UNHS program; 5) work with other programs such as Resource Mothers and Healthy Start and with local health department nutritionists to assist with aggressive follow-up; 6) work with the PC to manage informed consent and confidentiality issues; 7) work with the SEC regarding reporting of outcome measures from early intervention; and, 8) develop and update materials for parent education.
Both the PC and the SEC will collaborate with the following entities to assure training and education efforts will continue: Virginia Hospital and Health Care Association, the Virginia Hospital Research and Education Foundation, Speech-Language-Hearing Association of Virginia, Virginia Chapter of the American Academy of Pediatrics, the Virginia Academy of Family Physicians, Virginia Statewide Area Health Education Centers, Regional Perinatal Coordinating Councils, Part C, and DOE.
Contractors providing services under the training contracts will: 1) work with the Advisory Committee and partners to develop a competency-based curricula for training; 2) provide assurance that all materials are culturally competent and family centered; 3) pilot the training and materials; 4) conduct regional training programs; 5) assure provision of continuing education credits for all targeted professionals; 6) evaluate training based on pre- and post-tests and customer feedback; 7) provide all curricula and materials in package format; and, 8) submit a final summary report to VDH.
VDH will manage the training contracts according to the following process and schedule: 1) VDH will generate a RFP for training contracts by the second quarter of year one; 2) VDH will work with contractors and partners to develop and approve a competency-based curricula and the materials by the first quarter of year two; 3) contractors will pilot both curricula and materials with select group of target population to test content and process of training by fourth quarter of year one; 4) contractors will assure that CEU's are available for participants as appropriate; 5) contractors will submit a final report of all activities by end of year four; and, 6) contractors will provide all training modules/programs in package form and final form (including handouts, slides, testing documentation) by end of year four. In addition, VDH will: 1) encourage contractors to work together to combine training programs where possible; 2) make training curricula and materials available for use by others; and, 3) encourage and support local and regional collaboration among hospital staff, audiologists, PMCP and early intervention providers.
Families and consumers will continue to serve on the Advisory Committee, providing opportunity for review and input for all program documents and activities. Families will be involved with program evaluation through participation in the family satisfaction surveys planned for years one and four.
VDH will identify geographic areas in need for equipment based on the criteria that each planning district will have at least one facility with diagnostic equipment. To receive the funds, the facility will be required to provide insurance case management to non- and under-insured families to enhance the families' health coverage. VDH will: (1) identify and utilize available resources such as hospital indigent care funds, loans from the Virginia Health Care Foundation, manufacturer discounts and carry-over Title V funds, (2) finalize criteria for application for assistance based on the facility's documented hardship and (3) provide funds to approved sites by end of year two.
Through the Program Support Technician, the SEC, the FC and the PC, VDH will be in direct contact with hospitals, providers, and consumers, providing: 1) technical assistance to participating hospitals regarding the electronic database, protocols and reporting requirements; 2) performance data to hospitals as requested; 3) technical assistance to audiologists regarding protocols and reporting; 4) information and referral for PMCP and families; and, 5) technical assistance to early intervention providers regarding documentation of developmental outcomes.
11. Evaluation plan.
11.1 Evaluation of the Project's Impact
This project focuses on systems changes in order to increase the number of newborns screened, improvement in knowledge of hospital screening staff, PMCP, audiologists and early intervention providers. Evaluation of the project's impact will center on the project's major outcome goals: 1) 100% of newborns born in Virginia will be screened prior to discharge or by one month of age; 2) 100% of those failing the screen will receive audiologic evaluation with diagnosis by 3 months of age; and, 3) 100% of infants with confirmed hearing loss will be enrolled in a program of appropriate early intervention by 6 months of age.
This project addresses four of the six core outcomes, indicators of systems of care for CSHCN: (1) all CSHCN will receive ongoing comprehensive care within a medical home; (2) all children will be screened early and continuously for special health care needs; (3) services for CSHCN and their families will be organized in ways that families can use them easily; and, (4) families of CSHCN will participate in decision-making at all levels and will be satisfied with the services they receive. The project will help Virginia improve its performance on MCHB Performance Measure 10: Percentage of newborns who have been screened for hearing impairment before hospital discharge, and to meet the Healthy People 2010 Objective 33: Increase to 100 percent the proportion of newborns who are screened for hearing loss by one month of age, have diagnostic followup by three months and are enrolled in appropriate intervention services by six months.
To document an increase in number of newborns screened prior to discharge or by one month of age and the decrease in missed and refer rates, baseline data will be taken from the period October December, 2000 (second quarter of full mandated UNHS). Monitoring of progress will occur quarterly.
VDH will measure the percent of newborns who refer from/fail or miss screening and who receive audiological evaluation by three months of age. Audiologists and facilities conducting follow-up audiologic assessments are asked to report results to VDH on the Report of Follow-up Form; program staff enter the information into the database. The baseline for this measure will be calculated for the April - June, 2001 period and will be compared with subsequent quarterly measures.
VDH will document the percent of infants with confirmed hearing loss who receive early intervention services by 6 months of age as reported on the follow-up form and via direct contact with PMCP and parent. In addition, VDH will work with Part C to establish a mechanism to obtain enrollment, service information, and outcomes on infants and toddlers with hearing loss directly from the local service coordinator. Baseline for this measure will be calculated for the April - June 2001 period and will be compared with subsequent quarterly measures.
11.2 Evaluation of the Project's Efficiency and Effectiveness
Training, assurance of access to information and services, tracking of infants, quality assurance and reporting and dissemination of program data are the five main strategies VDH and its partners will use to assure the early identification and effective follow-up of infants and young children with hearing loss. The program will only have the desired impact if these strategies are implemented efficiently and effectively. Moreover, measures must be monitored frequently to allow program staff to identify and resolve problems quickly and identify new areas of need. Screening is effective only if refer and missed rates are minimized and follow-up is assured. By the end of the project period overall program evaluation also will include the data elements of the EHDI National Database from CDC and the benchmarks and quality indicators identified in the Joint Committee on Infant Hearing Year 2000 Position Statement.
This project will measure and/or report on:
Specific measures of evaluation of the project goals and objectives are described in the Project Activities Time Allocation Table, which begins on page 57.
11.3 Evaluation of Personnel and Contractors
As an employee of VDH, the PC will be required to have a performance plan, signed by the PD, which will be tied to accomplishments of project objectives and strategies. The PD will meet weekly with the PC to problem-solve various aspect of the project and will meet monthly to assess progress. Annually, the PD will conduct a Performance Evaluation of the PC: this mechanism allows the supervisor to formally evaluate progress toward achievement of objectives and strategies. These same evaluation mechanisms hold for the Evaluation and Surveillance Coordinator and the Follow-up Coordinator, who will be supervised by the PC.
In developing contracts, VDH assures that reimbursement is tied to quality completion of specific deliverables. This built-in accountability mechanism and the close contact of the PC with the contractors assure that VDH receives a quality product.