9A: Purpose of the Project
The purpose of the project is to facilitate determining that every child born in Kansas is given a physiologic hearing screening test prior to hospital discharge, outpatient screening within one month of age, audiologic assessment by three months of age, early intervention by six months of age, ongoing family-to-family support, and all results linked with the infant's medical home. In addition, that families, professionals and support personnel associated with newborn hearing screening have the knowledge and competencies to effectively manage their role in newborn hearing screening.
1. The Challenges
The Kansas Newborn Infant Hearing Screening Act, signed into law on 4/14/99, took effect statewide 7/1/99. It was passed unanimously in both the House and the Senate, indicating statewide support of this bill. Funding was made available for a full time program coordinator. Our goal in Kansas is to implement an effective newborn hearing screening system which includes, as needed and as appropriate for the family, follow-up for assessment by three months of age, and amplification and early intervention by six months of age. There were 38,229 births in Kansas in 1999 including 219 births that did not occur at birthing facilities. Eleven of the 97 birthing hospitals account for 60% of the births. To help attain our goal and in order to determine that every newborn in Kansas has a physiologic hearing screening prior to hospital discharge and as needed, outpatient referral screening within one month, assessment within three months, and amplification and early intervention services within six months, a data transmission system and data management follow-up system must be developed. To assure that families, professionals, and support personnel understand the importance, implications, protocols and program management of newborn hearing screening and follow-up, training must be provided.
2. Rationale and Evidence to Support the Proposed Project
Kansas effectively uses an electronic birth certificate (EBC) data transmission system in 63 hospitals (approximately 97% of the births); paper reports are sent to the State for the remaining percent. Addition of the newborn hearing screening data to the birth certificate will provide the basic data needed to determine whether the law to screen all newborns is met. Existing collaboration between Kansas= Vital Statistics and the Newborn Screening (metabolic/genetic) Program (e.g., for PKU, galactosemia, etc.) has demonstrated the efficacy and efficiency of this system, including timely follow-up with the medical home and family. A parallel system for non-EBC hospitals (secure internet transmission or paper depending on hospital capability) will also be implemented.
An effective newborn hearing screening system must include informed people. Prior to the Newborn Infant Hearing Screening Act, the required information about newborn hearing for families and hospital personnel concerned the 1994 JCIH risk indicators for hearing loss. To date, two workshops have been provided to hospital and medical personnel about implementing the newborn hearing screening law (e.g., protocols, equipment, policies), and one training opportunity has been provided to families and early intervention service providers. Family centered, organized, statewide training to meet the needs of all persons associated with the newborn hearing screening and intervention initiative is needed.
3. Anticipated Benefit
A sustainable statewide data transmission and management system will help us monitor that all newborns have a physiologic hearing screening that is consistent with the JCIH 2000 recommended standards (3. Screening Technologies, American Journal of Audiology, page 14) and, as needed, audiologic assessment, amplification, and early intervention. Training statewide will help personnel and families acquire the knowledge and competencies needed to effectively manage the newborn hearing screening, assessment, and intervention components of the program including timeliness and coordinating these components with the child=s medical home.
9B: Organizational Experience and Capacity
Kansas, participated in the Maternal and Child Health Bureau grant at the Marion Downs National Center for Infant Hearing (MDNC). Through this grant, the infrastructure for an effective universal newborn hearing screening system was clearly delineated and individualized technical assistance was provided which guided Kansas in the many aspects of program implementation. The MDNC guidance emphasized a comprehensive approach to implementing a newborn hearing screening program. From this guidance an Advisory Committee and three Task Forces (screening; assessment/amplification; early intervention) were formed (Appendix). These Infant Hearing Task Forces are in the final process of developing or printing guidelines and materials for infant hearing screening (targeting prior to hospital discharge), assessment and amplification for the infant, and early intervention for infants and their families.
Kim M. Sykes, M.A., CCC-A, is the Coordinator of Sound Beginnings. She is a member of the Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSHWA). This national organization developed a 1996 Position Statement regarding Universal Hearing Detection in reference to the Healthy People 2000 Objective (17.16) to reduce the average age at which children with significant hearing loss are identified. To meet the Healthy People 2010 goals, DSHPSHWA has had many forums providing information to develop a comprehensive approach (hearing screening through intervention) to a newborn hearing screening program. Ms. Sykes is also a fellow of the American Academy of Audiology and a member of the American Speech-Language-Hearing Association.
Ms. Sykes represents the Kansas Department of Health and Environment (KDHE) on the Kansas Commission for the Deaf and Hard of Hearing (KCDHH). KCDHH, an advocacy group for services and programs for Kansans who are deaf and hard of hearing, was instrumental in coordinating grass roots support for the Kansas Newborn Infant Hearing Screening Act. KCDHH serves in an advisory capacity for Sound Beginnings.
Kansas= Newborn Screening program (NBS) for metabolic/genetic disorders (e.g., phenylketonuria, galactosemia, hypothyroidism and hemoglobinopathies) requires a comprehensive approach (planning, implementation, evaluation) of all components of the program (screening; follow-up through diagnosis; intervention). Aggregate data from this program are included in the MCH Title V Block Grant Annual Report. There are similarities in program implementation between NBS and the Sound Beginnings.
Sound Beginnings is in the Bureau for Children, Youth and Families (BCYF) which administers both MCH and CSHCN, as well as a variety of other programs including the Early Intervention Program for Infants and Toddlers with Disabilities (Part C) of the Individuals with Disabilities Education Act (IDEA) and the Supplemental Nutrition Program for Women, Infants and Children=s (WIC).
Through the guidance of Lorne Phillips, PhD, State Registrar and Director of the Center for Health and Environmental Statistics in the KDHE, the Vital Statistics program has effectively implemented an electronic birth certificate (EBC) system for more than ten years. In 1992, Dr. Phillips received the Southwestern Regional Government Technology Conference Advisory Board Certificate of Recognition Award for the Kansas Vital Statistics Automation Project. For more than three years, Vital Statistics, the Kansas Health and Environmental Laboratory, and the Newborn Screening program (metabolic/genetic) have collaborated by linking data to determine which newborns have not participated in the NBS program and by linking follow-up needs against infant deaths. This collaboration has proved to be effective and efficient, and allows the NBS follow-up program to be sensitive to families. Dr. Phillips is an Adjunct Assistant Professor for the University of Kansas Medical Center, Department of Preventive Medicine, and he has served as a member of state committees for health statistics, health education and training, and information resource management. He is a member of the Executive Committee of the National Association of Public Health Statistics and Information Systems, presently serving a two-year term as Past President.
9C: Administration Structure
The project will function within the Kansas Department of Health and Environment (KDHE). KDHE has four divisions, including the Division of Health, and the Center for Health and Environmental Statistics (CHES).
Located in the Division of Health is the Bureau for Children, Youth and Families (BCYF) which administers, among other programs, the following: Title V Children with Special Health Care Needs (CSHCN), Maternal and Child Health Block Grant, the Early Intervention Program for Infants and Toddlers with Disabilities (Part C) of the Individuals with Disabilities Education Act (IDEA), known as Infant-Toddler Services (ITS), Sound Beginnings, and the Newborn Screening Program (metabolic/genetic). The latter three programs are in the Children's Developmental Services Section of the BCYF, the director position for this section will be vacant December 8, 2000 and the closing date for applications is December 15, 2000. Services for Children with Special Health Care Needs, another section in the BCYF, is under the direction of Jamey Kendall, RN. Other programs with links to Sound Beginnings are the Maternal and Infant Program and the Healthy Start Home Visitor Program, which are in the Children and Families Section of the BCYF under the direction of Ileen Meyer.
1. Project Relationships Within Agency
Services for Children with Special Health Care Needs (CSHCN): In the BCYF, Jamey Kendall, RN, directs this Section. Infants who do not pass the hearing screening can access assessment services through the Infant-Toddler Services (ITS) community-based Network, linking with CSHCN for reimbursement for the assessment. If the infant meets CSHCN eligibility, family centered services, provided through the child's ITS Network, are reimbursable by CSHCN. Data are shared at the State level for this population. Ms. Kendall oversees the MCH Title V Block grant application and annual report, which includes reporting aggregate data for Sound Beginnings. Ms. Kendall is on the Infant Hearing Advisory Committee.
Infant-Toddler Services (ITS) (Part C of IDEA): The ITS Coordinator, Carolyn Nelson, is under the supervision of the CDS Director. Ms. Nelson is on the Advisory Committee and on the Early Intervention Task Force for Sound Beginnings. Early intervention services are available statewide through 37 community based Early Intervention Networks. Family centered services in natural environments are the standard of practice. Protocols are being developed to refer newborns who do not pass the hearing screening to ITS through the Hospital to Home referral system developed by ITS. Audiologists, speech-language pathologists, teachers of the deaf and hard of hearing, and early childhood special educators are among the service providers available at the Networks. Timelines for evaluation and development of the individualized family service plan (IFSP) follow IDEA federal regulation which supports the goal of diagnosis by three months of age and, with parent consent, the initiation of early intervention services by six months of age. Sound Beginnings collaborates extensively with ITS regarding early identification and intervention.
Mr. Joe Porting is Benefits Coordinator with the Infant-Toddler Services Program and also represents the family perspective for children with disabilities. He is Kansas= representative to Family Voices, and is an active participant on many committees and task forces for children.
Newborn Screening (NBS) Program (metabolic/genetic): The NBS Follow-Up Coordinator, DeAnna McClenahan, RN, is under the supervision of the CDS Director. NBS follow-up protocols, long accepted by the medical community, can be adapted for use by Sound Beginnings. The collaborative data base link with Vital Statistics will be implemented for Sound Beginnings including linking infants with death certificates prior to hearing screening follow-up at the State level.
Vital Statistics, located in the Center for Health and Environmental Statistics, a division of the KDHE, manages the birth certificate system (electronic and non-electronic). Personnel from Vital Statistics provide ongoing training for hospital birth certificate clerks regarding upgrades in the electronic birth certificate (EBC) system and to maintain quality of data entry. This project proposes to transmit the majority of newborn hearing screening data via the EBC system, implement a database link similar to that used by Vital Statistics and NBS, and to collaborate on the training of hospital birth certificate clerks for data transmission.
2. Project Relationships Within Community and State
Kansas Commission for the Deaf and Hard of Hearing (KCDHH): KCDHH was instrumental in organizing grass roots support for passage of the Kansas Newborn Infant Hearing Screening Act. This advocacy group will continue to function in an advisory capacity for Sound Beginnings, and its executive director and associate director are on the Sound Beginnings' Advisory Committee and Infant Hearing Task Forces. A standing agenda item at the KCDHH quarterly meetings is an update of the progress made implementing the legislation. A majority of the KCDHH are consumers (adults who are deaf/hard of hearing; parents of children who are deaf/heard of hearing) representative of the wide variety of viewpoints associated with hearing loss.
Families Together, Inc., The Parent Training and Information Center for Kansas: Infant-Toddler Services and Services for Children with Special Health Care Needs have contractual agreements with Families Together, Inc. to provide family training, the Child Advocate Program (for infants and toddlers whose parents have had their parental rights terminated), the Parent to Parent Program (matching a newly referred parent to a volunteer supporting parent), parent networking conferences and family enrichment weekends. Families Together, Inc. has membership on Sound Beginnings' Screening Task Force. This project proposes to further our work with Families Together, Inc. to develop family training opportunities, family centered materials, and enhance the Parent to Parent Program to meet the needs of families with newly identified infants with hearing loss.
Kansas State Department of Education (KSDE): For infants and toddlers who continue to need intervention services beyond age three, transition protocols are in place with the preschool program (Part B of IDEA) administered by the Kansas State Department of Education. During Fiscal Year 1999, Infant-Toddler Services (ITS) collaborated with KSDE, with our mutual technical assistance contractee (Kansas Inservice Training System), and with the Coordinating Council for Early Childhood Developmental Services to provide regionally based workshops statewide regarding transition protocols. KSDE has a representative on Sound Beginnings' Advisory Committee, and several educational audiologists, teachers of the deaf and hard of hearing, and school speech-language pathologists are on the Sound Beginnings' Task Forces.
Kansas Social Rehabilitation Services (SRS): The Medicaid program and State Child Health Insurance Program (Health Wave) are housed in SRS. Infant-Toddler Services (Part C of IDEA) has collaborated with Medicaid to use a special Medicaid Provider billing number for the Infant-Toddler Services Early Intervention Networks. Networks= use of this number allows them to bill for early intervention services for Medicaid eligible infants and toddlers. Audiologic assessment, assistive devices, and speech-language pathology are examples of services included in this arrangement. Sound Beginnings is exploring additional funding options through Medicaid and Health Wave. Medicaid has a representative on Sound Beginnings' Advisory Committee.
Kansas University TeleMedicine Program: KUTM is one of the top five most active telemedicine programs in the world and, in 1999, received the President=s Award by the American Telemedicine Association for its historic contributions in the advancement of telemedicine. A digital telecommunication network utilizing interactive video technologies, KUTM provides clinical and educational (CE) health services to health providers and patients statewide. Sound Beginnings will collaborate with the KUTM program to provide educational services statewide and to explore ways to provide clinical health services (newborn hearing screening and assessment).
The BCYF contracts with the Leadership Education in Neurodevelopmental Disabilities (LEND) program at the Children=s Developmental Unit at the Kansas University Medical Center to administer the CSHCN outreach program in the tertiary care system. The LEND program also provides extensive graduate level preservice multi-disciplinary training as well as technical assistance throughout the state, and links with the area health education centers (AHEC=s) statewide. Sound Beginnings will collaborate with the LEND program and AHEC=s for distance learning opportunities.
Sound Beginnings' Infant Hearing Task Force Chairpersons have outstanding credentials and provide valuable consultation to the program and to the project. Teresa Kennalley, MA, CCC-A, chairperson of the Screening Task Force, is the Director of Audiology at Via Christi Medical Center in Wichita, KS. She has coordinated the newborn screening program for the second largest birth facility in Kansas for many years. Judith Widen, PhD, CCC-A, chairperson of the Assessment and Amplification task force, is Associate Professor on the faculty of the Hearing and Speech Department of The University of Kansas Medical Center. Dr. Widen currently is one of the investigators in the NIH infant hearing research project, specifically coordinating research addressing assessment protocols for very young infants. Jane Schwartz is chairperson of the Early Intervention Task Force. She is a Teacher for the Deaf and Hard of Hearing, working in an urban infant-toddler program in the Wichita area. Her expertise as a service provider and her knowledge of the many and varied intervention strategies is well known statewide.
Statewide professional organizations: This project will collaborate with State professional organizations (e.g., Kansas Hospital Association; Kansas Speech-Language-Hearing Association) to provide professional training to meet the needs of their constituencies. The professional organizations routinely conduct training needs assessments of their memberships and are experienced at providing effective training to meet their needs.
9D: Available Resources
1. Staff
To carry out this project, staff will include the Program Coordinator/Project Director, Kim M. Sykes, M.A., CCC-A, and a full time Program Consultant. Support staff will be shared from the Newborn Screening Program (metabolic/genetic) and the Infant-Toddler Services program (Part C of IDEA). Sound Beginnings staff will be housed within the Children's Developmental Services Section, thereby having immediate proximity with the Infant-Toddler Services Coordinator (Part C of IDEA) and the Newborn Screening Coordinator (metabolic/genetic). Ms. Sykes will collaborate and/or contract with entities (e.g., Families Together, Inc.; KU TeleMedicine) to implement the training aspect of this project. The Program Consultant, under the supervision of Ms. Sykes, will work with the hearing screening data management system, including data management and follow-up of hearing screening, audiologic and medical assessment, and early intervention data; follow-up with the medical home, family, and service providers.
The Program Coordinator and Consultant will also be in direct proximity to other BCYF Staff who are in advisory capacities to Sound Beginnings, including: Ms. Linda Kenney, MPH, Director, BCYF; the Children's Developmental Services Director; Ms. Jamey Kendall, RN, Director, Services for Children with Special Health Care Needs; and Mr. Gerald Block, Fiscal Manager, BCYF.
Lorne Phillips, PhD, Director of the Center of Health and Environmental Statistics (CHES), and Gabriel Faimon, Director of Vital Statistics in CHES, will oversee the enhancement of the electronic birth certificate system. Vital Statistics staff and the Program Coordinator will provide training to the hospital birth certificate clerks.
KDHE Information Systems personnel, under the leadership of Jim Rousseau, will oversee programming for data transfer from Vital Statistics to Sound Beginnings. Other KDHE staff, in programs such as epidemiology, rural health, and health promotion, are available as needed.
Kansas will continue to utilize the current technical assistance MCHB grant recipient, the National Center for Hearing Assessment and Management (NCHAM), as a valuable resource for assistance with statewide program implementation.
2. Funds
State General Funds are allocated for the Program Coordinator, including salary and benefits, office space and furniture, communications, and some in-state travel.
3. Equipment
State General Funds are allocated to provide for office space (desk, chair, personal computer, communications including phone, e-mail and internet access) for the Program Coordinator.
Other equipment (e.g., fax; photocopier; calculator; shredder) are supported by MCH and Part C (IDEA) funds.
4. Facilities
The Bureau for Children, Youth and Families is housed in the Landon State Office Building, 10th floor, Topeka, Kansas. The Landon State Office Building is part of the Capitol Complex. The Children=s Developmental Services Section, including the Infant-Toddler Services program (Part C of IDEA), the Newborn Screening program (e.g., PKU, galactosemia) and Sound Beginnings, is located in one portion of the 10th floor, across the hall from Services for Children with Special Health Care Needs Section, and down the hall from the Children and Families Section (Maternal and Infant program; Healthy Start Home Visitor program).
9E: Identification of the Target Population and Service Availability
The target population includes Kansas birthing facilities and the birth cohort and families, professionals and technical personnel who are allied with the program.
1. Kansas Birthing Facilities/Birth Cohort
Kansas hospital personnel need an efficient, non-duplicative means to transmit hearing screening results for each newborn or infant. A special hearing screening data form for each newborn, mailed to the State, would require hospital personnel to rewrite identifying and demographic information, and the State, as recipient of the hearing screening results forms, to enter the data manually. Sixty-three Kansas hospitals, accounting for 97% of the Kansas births, effectively use an electronic system to transmit birth certificate data. This project proposes to add hearing screening results and medical home information to the birth certificate, and transmit the data via the existing electronic birth certificate (EBC) system. Vital Statistics, in the KDHE Center for Health and Environmental Statistics, is supportive of this initiative. For those hospitals that do not use the EBC system, a paper birth certificate system is in place, and this project proposes to add hearing screening results and medical home information to that form.
For those infants in newborn intensive care units (NICU), whose birth certificate is transmitted to the State before it is medically recommended to screen hearing, this project proposes to implement a system for hospitals to transmit the identifying and demographic data, hearing screening results, and medical home information via secure internet. A very few hospitals have access to neither the EBC system nor secure internet, and these hospitals have very few births per year. For these hospitals, a paper reporting system, using the same form as for NICU infants, will be implemented. Forms will be mailed or faxed to the State for manual data entry. Outpatient screening facilities and/or clinics and service providers for assessment and early intervention will mail or fax data reporting forms to the State for data entry, which will be matched to the infant from the Sound Beginnings' database.
Over the four years of the project a small monetary award will be provided to hospitals to assist in program implementation. The hospitals may choose from one of four funding program implementation assistance options: physiologic hearing screening equipment; data management software; training for support staff or supplies. Hospitals will complete an application for monetary award to Sound Beginnings indicating the desired program implementation option. Hospitals will submit a summary to Sound Beginnings for equipment or database software purchased, training activities or supplies supported by the monetary award.
2. Personnel Training
Personnel allied with newborn hearing screening (e.g., families, hospital community, medical community, audiologists, early intervention service providers) have an immediate need for information. There are multiple barriers involved in developing print materials and in the dissemination of information, including: time required to organize the content; time to organize logistics; selection of presenters; time away from work for workshop participants; travel across a large State. Kansas has developed a multi-site distance learning system through the use of interactive television. These sites are available through hospitals, KDHE, KSDE, and Area Health Education Centers. This proposal will link these sites to present information to the aforementioned groups. The Kansas Parent to Parent program through Families Together, Inc., will assist families in the transitions from screening, and assessment and into intervention. Family partners will assist in developing print materials. State professional organizations, at annual meetings and for continuing education purposes, have shown much interest in collaborating with this program to facilitate dissemination of information. Scheduling conflicts, personnel turnover, and new families entering the scene will result in the need for repeated presentations and printing of information.
9F: Needs Assessment
1. Data Transmission and Management
When Kansas= law mandating newborn risk screening for hearing loss was in effect through June 30, 1999, a handwritten paper data form was completed for each newborn prior to hospital discharge. The hospitals then sent the forms to the State for data entry. This data transmission system had severe limitations: handwritten forms were incomplete and/or illegible; follow-up to complete the required information was extremely time consuming and in some instances the information was no longer available; manual data entry was required; forms were lost or delayed in the mail process. This antiquated system was not capable of determining which newborns did not have a risk screening for hearing loss. Since it was not linked with the automated Vital Statistics system, assuring that an at-risk follow-up letter was not sent to the family of a deceased baby was time consuming and cumbersome. In addition, tracking and follow-up management for screening and assessment were limited and management was not included for amplification, early intervention, or medical home linkage. The current data management system needs to be upgraded to provide a comprehensive newborn hearing screening and intervention program data transmission and management system. Initially, commercially available management software will be utilized until the data management system to include all data sets and reporting capability is completed.
This project will enable Kansas to link the majority of hearing screening data onto the existing electronic birth certificate (EBC) data transmission system, a known, accurate system available at 63 birthing hospitals accounting for 97% of the Kansas births. This project will enable Kansas to link hearing screening data with births to determine which newborns have been by-passed in the hearing screening process. This system will overcome the barrier of matching follow-up needs with deceased infants. This system will dramatically reduce manual report completion and data entry (with the inherent problems as noted above). This system will allow tracking and follow-up management from screening prior to hospital discharge through early intervention services for those infants identified with hearing loss.
Colorado is one other state that transmits hearing screening data via the EBC system. We will duplicate the Colorado data sets and coding system (for those newborns with other than a completed hearing screening). The only additional data set that Kansas will use is the name of the newborn=s primary care physician to facilitate collaboration with the newborn=s medical home.
Once the hearing screening data transmission and management system is in place, aggregate data can be analyzed, child specific data for follow-up purposes can be reviewed, hospital aggregate data can be analyzed, gaps in data retrieval can be determined, timeliness of assessment, amplification and early intervention can be analyzed. Analysis of these results will indicate where there are needs in the system.
2. Personnel Training
General information such as program goals, philosophy, process, best practices and regulations must be provided to all constituencies allied with Sound Beginnings. In addition, each of the participating groups need information specific to their role in the process. The avenues for information dissemination need to vary in order to meet the schedules and changing needs of people.
Sound Beginnings Screening, Assessment/Amplification, and Early Intervention Task Forces, have developed guidelines for families and professionals that parallel the JCIH 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs. The guidelines are ready for print (Amplification guideline is in final development) and will be disseminated statewide. Sound Beginnings' Newborn Hearing Screening (NHS) Guidelines provide recommended best practices including screening technologies and protocols; low birth rate hospitals; responsibilities of coordinator, support personnel, audiologist and primary care physician in NHS programs; data management; hospital communication to physician and family; hospital documentation; reporting requirements; and transition to assessment. Specific guidelines for professionals on infant audiologic and medical assessment, and amplification are in final development or ready for print. Sound Beginnings Early Intervention Task Force has developed a guide ready for print, A Kansas Resource Guide For Families With Infants and Toddlers Who are Deaf/Hard of Hearing. The resource guide has information on initial feelings and emotions, communication choices and terminology, hearing and hearing loss, infant-toddler services in Kansas, and a resources and common terminology section. There is also a chapter for families on "who will help us", which includes the roles of professionals such as early intervention specialist, audiologist, pediatrician, otolaryngologist, as well as parents of children who are deaf or hard of hearing, adults who are deaf or hard of hearing, and what the family can do to help their child.
In June 1999, a workshop entitled ADesigning and Implementing Newborn Infant Hearing Screening@ was presented in Kansas by faculty of the Hearing Health Institute, Dallas, Texas. Sixty-one percent of the participants were from the nursing/medical communities; 22% were from the audiology community; 17% were from other areas (e.g., families; teachers of the deaf and hard of hearing). At that time, participants were asked to identify the training and information they needed as well as the preferred format for additional training. Results of the assessment identified the need for more than 20 training topics (e.g., equipment and software options; data; personnel training; communication strategies to families, physicians; referral process; community resources; reimbursement strategies; audiologic assessment protocols; State reporting requirements). The nursing/medical communities equally preferred regional/statewide workshops and mail; audiologists equally preferred workshop, mail and via professional organization. The least preferred training format by all groups was e-mail/internet/Web page. Other options noted included interactive TV and Ahands-on@ workshops. From the results of the survey, it is evident that for information to be accessed, a variety of dissemination strategies will be required.
Sound Beginnings, Kansas= Infant-Toddler Services, the Kansas School for the Deaf, the Kansas State Department of Education, and the Kansas Commission for the Deaf and Hard of Hearing (KCDHH) have been in the planning stages with the Ski Hi Outreach and Training Program to bring their workshop to Kansas. Ski Hi is in the process of supplementing their curriculum for intervention strategies for very young infants who are deaf and hard of hearing. Infant-Toddler Services (Part C of IDEA) has provided the audio tapes and materials of the American Speech-Language-Hearing Association=s Teleseminar, entitled AFamily Centered Early Intervention for Children Who are Deaf and Hard of Hearing,@ to each of the 37 Early Intervention Networks. The networks have or will schedule a community-based in-service to review these materials. Of those Networks that have reviewed the materials, 100% rated as Agreat(!)@ the convenience of learning as their schedule permitted.
Kansas has benefited from the information, technical assistance, and workshop for State Early Hearing Detection and Intervention (EHDI) program coordinators provided by the National Center for Hearing Assessment and Management (NCHAM) through their grant. Moreover, there is considerable sharing of materials and curricula by States and in addition to information provided on their web page including an interactive bulletin board on many EHDI issues.
This project will enable Kansas to provide a variety of training opportunities to all constituencies. In addition, it will enable Kansas to develop printed materials (brochures, fliers, pamphlets) covering a variety of topics, and printed in languages to meet the needs of under-represented people. The project will enable Kansas to have ongoing assessment of the training and materials. Sound Beginnings will link with current needs assessments from Infant-Toddler Services (Part C of IDEA) and Services for Children with Special Health Care Needs.
9G: Collaboration and Coordination
This project will collaborate with Vital Statistics in the Kansas Department of Health and Environment (KDHE) to develop and implement a hearing screening data transmission and management system. As opposed to creating a separate data transmission system (hospital to State) for Sound Beginnings, this project will enable an enhancement to the existing electronic birth certificate (EBC) system by including newborn hearing screening data. This enhancement will eliminate the need for hospital personnel to double-enter identifying and demographic data for the vast majority of newborns. This enhancement will allow for a link of hearing screening data with births to determine which infants have not accessed newborn hearing screening, and with deaths to assure that follow-up activities are family sensitive. This project will also collaborate with Vital Statistics in the training of birth certificate clerks to enter the hearing screening data.
This project, located in the Children=s Developmental Services Section with Infant-Toddler Services (Part C of IDEA), will collaborate with Infant-Toddler Services in: the provision of training for early intervention service providers; training for audiologists in infant hearing assessment and amplification; needs assessment regarding training; access to the Parent to Parent program; dissemination of family centered informational brochures, pamphlets, etc.; the Infant-Toddler Services Hospital to Home initiative; follow-up data to determine infant status regarding assessment and development of an individualized family service plan (IFSP).
This project will collaborate with Services for Children with Special Health Care Needs, in: sharing aggregate data related to the CSHCN core outcome of screening all children early and continuously for special health care needs; sharing data related to statewide and infant-specific need for assessment; needs assessment for community based assessment services, training, and family satisfaction.
This project will collaborate with the Newborn Screening (NBS) Program (metabolic/genetic) in information dissemination to infants= primary care physicians. Physicians have requested that hearing screening results be forwarded to the infants= medical homes in similar fashion to the NBS results (for PKU, galactosemia, etc) which are faxed to the primary care physician.
This project will collaborate with the Kansas Commission for the Deaf and Hard of Hearing (KCDHH), a consumer advocacy group under the Kansas Department of Social and Rehabilitation Services (SRS). KCDHH functions in an advisory capacity for implementation of this program and KCDHH members are on the Advisory Committee and Task Forces.
This project will collaborate with Families Together, Inc., the Parent Training and Information Center for Kansas in: enhancing the Families Together Parent to Parent program to meet the needs of families with newly identified infants who are deaf or hard of hearing; providing family perspective to all curriculum and materials developed for the project; providing family training.
This project will collaborate with the K.U. TeleMedicine program, the LEND program, and professional organizations (e.g., Kansas Hospital Association; Kansas Medical Society; Kansas Speech-Language-Hearing Association) to provide a variety of family centered training opportunities for families, professionals and support personnel.
This project will collaborate with the Kansas State Department of Education in the provision of training opportunities for services providers (e.g., educational audiologists; speech-language pathologists; teachers of the Deaf and Hard of Hearing) and transitioning activities (Part C to Part B), and with the Kansas Department of Social and Rehabilitation Services= Medicaid and Child Health Insurance Program (Health Wave).
9H: Goals and Objectives
1. Goals
Sound Beginnings goal is that all Kansas infants will access an effective newborn hearing screening program which includes a physiologic screening prior to hospital discharge,
outpatient referral screening within one month of birth, and as needed and as appropriate for the family, includes follow-up for assessment by three months of age, and amplification and early intervention by six months of age, linking all results with the newborn=s medical home, and that families, professionals and support personnel associated with newborn hearing screening have the knowledge and competencies to effectively manage newborn hearing screening. As noted previously, some of the components of the total hearing screening program are being developed using other resources.
This project=s goals will contribute to the overall development of Sound Beginnings. The project=s goals are: a) to develop an efficient, effective, and sustainable system that documents that all infants, with parental consent have a physiologic screening for hearing prior to hospital discharge, outpatient referral screening within one month of birth, and referral and follow-up for assessment and intervention services; and b) families, professionals and support personnel are informed participants in the newborn hearing screening program.
Goal a) will contribute to the ability for Kansas to be responsive to the MCH Services block grant data requirements regarding newborn hearing screening, and support the national agenda for CSHCN: "Achieving and Measuring Success for Children with Special Health Care Needs by 2010" core outcome of screening all children early and continuously for special health care needs. Goal a) will also link infant data with the infant=s medical home. Goal b) will contribute to the ability of Kansas to assure that families will have the information necessary to participate in decision making at all levels, with easy access to that information, and to services for their children. The goals of the project will facilitate the implementation of Sound Beginnings through a family centered, bipartite approach.
Currently, the EBC software is a DOS based system. Vital Statistics must upgrade the system to a modern Windows based system and plan to do this modification during Year 2 of this project. It is more cost effective to allow for electronic transmission of the hearing screening data during all four years of this grant project, than for hospitals to send paper reports to the State until the modification occurs. The State would have to hire personnel to enter the identifying, demographic and hearing screening data manually for all births for over a year until the modern EBC system is developed.
Hospitals are at varying stages of program implementation; some find it difficult because no funds were allocated for this initiative. There were 38,229 births in Kansas in 1999 including 219 births that did not occur at birthing facilities. Eleven of the 97 birthing hospitals account for 60% of the births. Currently, 46 hospitals report screening at least 90% of their newborns prior to discharge accounting for approximately 89% of Kansas births; 3 hospitals report screening less than 90% of newborns prior to discharge; and 48 hospitals report not screening prior to discharge accounting for approximately 8% of Kansas births. Eleven of the 48 hospitals not screening refer for outpatient screening completed within one month of age. This project proposes to give a small monetary award to participating hospitals in order to help implement their program. Hospitals will choose from one of four funding program implementation assistance options: physiologic hearing screening equipment; data management software; training for support staff or supplies. Hospitals will complete an application for monetary award to Sound Beginnings indicating the desired option and submit a summary of purchase, training activities or supplies supported by the monetary award. The funds to the hospitals would meet both project goals.
2. Objectives and Activities - Year 1
Objective 1-1: Assist with modification of the current EBC data system to transmit newborn hearing screening data and training of hospitals.
Activity 1-1.1: Assist with modification of the Electronic Birth Certificate (EBC) software with the addition of newborn hearing screening data including the name of the primary care physician, results of screening by ear, reason if screening not completed, by the end of the 1st quarter.
Activity 1-1.2: Modify the Vital Statistics database to be capable of storing, manipulating and transmitting screening data to Sound Beginnings by the end of the 1st quarter.
Activity 1-1.3: Assist with modifications, reprint and replacement of Hospital Worksheet stock to include hearing screening data by the end of the 1st quarter.
Activity 1-1.4: Assist with modifications, reprint and replacement of Certificate of Live Birth stock to reflect administration of hearing screening by the end of the 1st quarter.
Activity 1-1.5: Pilot the EBC software in at least one each large, small, urban and rural hospital, and modify software as needed, by the end of the 2nd quarter.
Activity 1-1.6: Purchase and utilize OZ, commercially available software, for data management of Sound Beginnings data from Vital Statistics, data from non-EBC hospitals, and data for infants in intensive medical care by the end of the 1st quarter.
Activity 1-1.7: Continue training birth certificate clerks in EBC to extract hearing screening information from birth records, and data entry by the end of the 4th quarter.
Objective 1-2: For hearing screening data that cannot be transmitted using the EBC system, add hearing screening data sets to an existing paper system for transmission by Internet, mail or fax and implement at Level F hospitals (1000 plus deliveries per year).
Activity 1-2.1: Develop an Internet format to transmit data via the Internet by the end of the 2nd quarter.
Activity 1-2.2: Train nursing staff in the level F hospitals (N=11) to transmit the hearing screening data by Internet, mail or fax by the end of the 4th quarter.
Activity 1-2.3: Train Sound Beginnings support staff on data entry for non-EBC hearing screening results by the end of the 4th quarter.
Activity 1-2.4: By the end of the 4th quarter, provide a small monetary award to the Level B (N=19) hospitals to assist with program implementation. The small award may be used toward any hearing screening equipment, data management software, training for support staff or supplies.
Objective 1-3: Develop and implement at least 6 strategies of information dissemination.
Activity 1-3.1: Complete contract to enhance the Parent to Parent program targeting families with infants with hearing loss by the end of the 1st quarter.
Activity 1-3.2: Identify family partners who will review all curricula/materials for family perspective by the end of the 1st quarter.
Activity 1-3.3: Develop, print and disseminate material targeting all families regarding hearing screening, hearing milestones and risk indicators (for late onset and progressive hearing loss) by the end of the 3rd quarter.
Activity 1-3.4: Develop, print and disseminate material for families with infants who have not passed hearing screening by the end of the 4th quarter.
Activity 1-3.5: Collaborate with distance learning partners (e.g., K.U. TeleMedicine; LEND) and provide training regarding hearing screening protocols targeting hospital based personnel by the end of the 3rd quarter.
Activity 1-3.6: Collaborate with at least two professional organizations or other agencies to provide training specific to those professions= needs by the end of the 4th quarter.
Activity 1-3.7: Monitor Parent to Parent program=s implementation throughout the year.
Activity 1-3.8: Link with existing needs assessments to determine specific needs of each targeted group by the end of the 3rd quarter.
3. Objectives and Activities - Year 2
Objective 2-1: Develop modern (Windows) EBC data system to transmit newborn hearing screening data, and roll out at 25% of the EBC hospitals.
Activity 2-1.1: Include hearing screening data in the development of the modern EBC system by the end of the 2nd quarter.
Activity 2-1.2: Pilot the modern EBC software in at least one each large, small, urban and rural hospital; modify software as needed by the end of the 3rd quarter.
Activity 2-1.3: Roll out the modern EBC software to 25% of the hospitals by the end of the 4th quarter.
Activity 2-1.4: Train birth certificate clerks in at least 25% of the EBC hospitals in the new system by the end of the 4th quarter.
Activity 2.1.5: Meet ongoing training needs due to birth certificate clerk turnover.
Objective 2-2: Modify the current Sound Beginnings database system to receive and manipulate hearing screening, assessment, and early intervention data including follow-up.
Activity 2.2.1: Modify the Sound Beginnings database to accept data from Vital Statistics, data from non-EBC hospitals, and data for infants in intensive medical care by the end of the 1st quarter.
Objective 2-3: For hearing screening data, which cannot be transmitted using the EBC system, implement paper data transmission system (Internet, mail or fax) at Levels E, D, and C hospitals (100 to 999 deliveries per year).
Activity 2-3.1: Train nursing staff in the levels E, D, and C hospitals (N=36) to transmit the hearing screening data by Internet, mail or fax by the end of the 4th quarter.
Activity 2-3.2: Develop self-training module for nursing staff by end of the 2nd quarter.
Activity 2-3.3: Pilot self-training module at four sites by end of 3rd quarter.
Activity 2-3.4: Complete revisions to the self-training module by end of 4th quarter.
Activity 2-3.5: By the end of the 4th quarter, provide a small monetary award to Level C (N=19) hospitals to assist in program implementation. (See Year 1).
Objective 2-4: Develop and implement at least 6 strategies of information dissemination.
Activity 2-4.1: Renew contract with Families Together, Inc. to continue the Parent to Parent program targeting families with infants with hearing loss by the end of the 1st quarter. Monitor the program - ongoing.
Activity 2-4.2: Identify family partners who will review all curricula/materials for family perspective by the end of the 1st quarter.
Activity 2-4.3: Develop, print and disseminate material targeting the needs of families regarding hearing assessment and medical assessment by the end of the 3rd quarter.
Activity 2-4.4: Develop, print and disseminate family centered material about amplification for infants with hearing loss by the end of the 4th quarter.
Activity 2-4.5: Collaborate with distance learning partners (e.g., K.U. TeleMedicine; LEND) and provide training based on needs assessment by the end of the 3rd quarter.
Activity 2-4.6: Collaborate with at least two professional organizations or other agencies to provide training specific to those professions= needs by the end of the 4th quarter.
Activity 2-4.7: Link with existing needs assessments to determine specific needs of each targeted group by the end of the 3rd quarter.
4. Objectives and Activities - Year 3
Objective 3-1: Roll out the modern EBC data system to transmit newborn hearing screening data at 100% of the EBC hospitals.
Activity 3-1.1: Roll out the modern EBC software to remaining 75% of the hospitals by the end of the 4th quarter.
Activity 3-1.2: Train birth certificate clerks in remaining 75% of the EBC hospitals in the new system by the end of the 4th quarter.
Activity 3-1.3: Meet ongoing training needs due to birth certificate clerk turnover.
Objective 3-2: For hearing screening data that cannot be transmitted using the EBC system, implement paper data transmission system (Internet, fax, mail) at Level B hospitals (50 to 99 deliveries per year).
Activity 3-2.1: Train nursing staff in the level B hospitals (N=19) to transmit the hearing screening data by Internet, fax or mail by the end of the 4th quarter.
Activity 3-2.2: Develop self-training module for Sound Beginnings support staff regarding paper system data entry by end of the 2nd quarter.
Activity 3-2.3: By the end of the 4th quarter, provide a small monetary award to the Levels D, E, F and A hospitals (N=40) to assist in program implementation. (See Year 1).
Objective 3-3: Develop and implement at least 6 strategies of information dissemination.
Activity 3-3.1: Renew contract with Families Together, Inc. to continue the Parent to Parent program targeting families with infants with hearing loss by the end of the 1st quarter. Monitor - ongoing.
Activity 3-3.2: Identify family partners who will review all curricula/materials for family perspective by the end of the 1st quarter.
Activity 3-3.3: Develop, print and disseminate material targeting the needs of families regarding intervention strategies by the end of the 3rd quarter.
Activity 3-3.4: Print and disseminate previously developed materials in languages other than English by the end of the 4th quarter.
Activity 3-3.5: Collaborate with distance learning partners (e.g., K.U. TeleMedicine; LEND) and provide training based on needs assessment by the end of the 3rd quarter.
Activity 3-3.6: Collaborate with at least two professional organizations or other agencies to provide training specific to those professions= needs by the end of the 4th quarter.
Activity 3-3.7: Link with existing needs assessments to determine specific needs of each targeted group by the end of the 3rd quarter.
5. Objectives and Activities - Year 4
Objective 4-1: Continuation training to birth certificate clerks.
Activity 4-1.1: Meet ongoing training needs due to birth certificate clerk turnover.
Activity 4-1.2: Integrate training of hearing screening data into ongoing training system by Vital Statistics for birth certificate clerks by the 4th quarter.
Objective 4-2: For hearing screening data that cannot be transmitted using the EBC system, implement paper data transmission system (Internet, fax or mail) at Level A hospitals (less than 50 deliveries per year) that are conducting newborn hearing screening.
Activity 4-2.1: Train nursing staff in the level A hospitals (maximum N=32) to transmit the hearing screening data by Internet, fax or mail by the end of the 4th quarter.
Activity 4-2.2: Evaluate effectiveness of the self-training module for training needed due to hospital staff turnover by end of 4th quarter.
Objective 4-3: Develop and implement at least 6 strategies of information dissemination.
Activity 4-3.1: Renew contract with Families Together, Inc. to continue the Parent to Parent program targeting families with infants with hearing loss by the end of the 1st quarter. Monitor program - ongoing.
Activity 4-3.2: Identify family partners who will review all curricula/materials for family perspective by the end of the 1st quarter.
Activity 4-3.3: Revise as needed, print and disseminate materials to meet the needs of families, hospitals, physicians, Infant-Toddler Networks, etc. by the end of the 4th quarter.
Activity 4-3.4: Collaborate with distance learning partners (e.g., K.U. TeleMedicine; LEND) and provide training based on needs assessment by the end of the 3rd quarter.
Activity 4-3.5: Collaborate with at least two professional organizations or other agencies to provide training specific to those professions= needs by the end of the 4th quarter.
Activity 4-3.6: Link with existing needs assessments to determine specific needs of each targeted group by the end of the 3rd quarter.
9I: Required Resources
1. Existing resources include:
2. Required Resources include:
9J: Project Methodology
1. Overall Program Model
Kansas= law mandating newborn hearing screening became effective 7/1/99. The initiative was spearheaded by an otolaryngologist, and guided through the legislative process by a representative. The major advocacy group supporting the legislation was the Kansas Commission for the Deaf and Hard of Hearing. At that time, an Advisory Committee and three Sound Beginnings' Task Forces (screening, assessment and amplification; early intervention) were in place (Appendix) and continue to function. The Screening Task Force has developed newborn screening Guidelines, which are ready to be printed and disseminated. The Guidelines are recommendations describing best practices. This Task Force has also drafted a brochure to disseminate in hospitals to all families of newborns regarding hearing, and hearing screening. Family consent strategies are being developed as models for hospital use. Regulations are being drafted. The Assessment and Amplification Task Force has developed guidelines describing best practices, including equipment needed for audiologic assessment for infants under the age of three months of age, recommended medical assessment for infants with hearing loss, and amplification options appropriate for infants under the age of six months (amplification guidelines in final draft form). This Task Force will also develop materials to provide to families regarding hearing and medical assessment and amplification. The Early Intervention Task Force has developed a family resource guide to services, exploring training options for service providers and families with linkages to Infant-Toddler Services (Part C of IDEA), and developing materials for statewide dissemination. The Task Forces accessed materials already available from the Marion Downs National Center for Infant Hearing, other states= programs, professional organizations, other internet web sites and paralleled the guidelines to the JCIH 2000 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs.
Hospitals are at varying stages of hearing screening implementation and data management. Some budgeted for equipment, explored equipment options in consultation with an audiologist, and developed local protocols and policy including policy for consent for screening. The hospitals with larger birth numbers have implemented the hearing screening component of the program. Some smaller hospitals are waiting for regulations to be in place before program implementation. Hospitals with less than 75 births per year (three year average) have the option of either conducting newborn hearing screening or developing an agreement with another nearby newborn hearing screening facility which would provide the hearing screening before the infants reach one month of age. Currently, 46 hospitals report screening at least 90% of their newborns prior to discharge accounting for approximately 89% of Kansas births; 3 hospitals report screening less than 90% of newborns prior to discharge; and 48 hospitals report not screening prior to discharge accounting for approximately 8% of Kansas births. Eleven of the 48 hospitals not screening refer for outpatient screening completed within one month of age.
Faculty from Hearing Health Institute, Dallas, Texas, conducted a statewide workshop regarding program implementation for hospital personnel. Another program implementation workshop took place in the Kansas City area for both Kansas and Missouri hospital personnel and audiologists.
2. Data Transmission
Kansas needs an effective and efficient hearing screening data transmission system from the birthing hospitals to the State. At present, birth certificate data are transmitted via an electronic birth certificate (EBC) system at 63 hospitals (including the tertiary care units), accounting for approximately 97% of the Kansas births. Hospital personnel are pleased with the EBC system; it is effective and efficient. This project proposes to modify the EBC software so that the hearing screening data per newborn can be transmitted to the State using the existing system. Hospital Birth Certificate Clerks will receive training to enter the hearing screening data along with the birth certificate data. Identifying and demographic information will need to be entered only once, thereby reducing the chance of error. Hearing screening data sets include right ear results, left ear results, a coded system to identify reason if no hearing screening took place (e.g., deceased; transferred to NICU; no parent consent). For most births, hospital personnel will not have to implement a second data transmission system.
Three conditions exist wherein the newborn hearing screening data can not be transmitted to the State using the EBC system: (a) for newborns at non-EBC hospitals: a paper system is in place for birth certificate data transmittal to the State; (b) for newborns having hearing screening as outpatients: the birthing hospital, having fewer than 75 births per year, can elect to have their births screened for hearing elsewhere; and (c) for newborns who are transferred to newborn intensive care units: the birth certificate data may be transmitted electronically before the infant is medically ready for hearing screening. It is estimated that 10-13% of the Kansas births may fall into one of these three categories. For these births, this project proposes to develop a parallel data transmission system. Non-EBC hospitals will send birth certificate and hearing screening data using an existing paper transmittal system. Using the same data sets, hospitals with Internet capability will transmit the data to the State in a prescribed format; hospitals without Internet capability will forward paper forms as designed by the State. Manual data entry by program support staff will be required for this limited number of screening results.
The KDHE Vital Statistics database will be modified to store, manipulate and transmit the hearing screening data to Sound Beginnings. A commercially available data management software will be utilized for screening, assessment, early intervention, medical home, and follow-up data until phased in modification of Sound Beginnings database. The Sound Beginnings database will be modified to interact with the Vital Statistics database and to enter, incorporate, store and manipulate hearing screening, assessment, early intervention, medical home and follow-up data. Sound Beginnings database will be run against the Vital Statistics database; non-links (e.g., no hearing screening data) will be followed up by the Sound Beginnings Consultant as well as follow-up of assessment, amplification, early intervention, and medical home.
Follow-up activities by the Sound Beginnings Coordinator will include collaborating with the Services for Children with Special Health Care Needs program, and with the 37 Infant-Toddler Services Early Intervention Networks (Part C of IDEA) to assure the availability of audiologic assessment, medical assessment, amplification and community based early intervention services for the infant as approved by the family. Additional, individualized support services for each family (e.g., Parent to Parent and other support groups) will be monitored by the Sound Beginnings Coordinator in collaboration with the community based Infant-Toddler Services Network, working within the local community and/or with Families Together, Inc.
3. Collaborative Statewide Training Opportunities
Sound Beginnings will interact with a variety of groups, each requiring general as well as specific information. The general information includes the purpose, goals, and outcomes of newborn hearing screening, as well as the overall process of screening, assessment and intervention. Specific information will address the role the group has in the newborn hearing screening process. The various groups that will receive training from this project include: families of newborns; families of infants with hearing loss; birth certificate clerks in hospitals; hearing screening technicians or other personnel in hospitals performing the hearing screening; hospital hearing screening program managers (e.g., nurses; audiologists; speech-language pathologists); hospital social workers or others in the Hospital to Home program developed by Infant-Toddler Services; pediatricians; family practitioners; otolaryngologists; local health department nurses; audiologists; speech-language pathologists; teachers of the deaf and hard of hearing; early childhood special educators; social workers in Infant-Toddler Services Early Intervention Networks; and other early intervention service providers. Family perspective in all aspects of training will be a standard of practice.
This project will collaborate with the existing Vital Statistics training program for Birth Certificate Clerks in hospitals. This training system has been in existence for the life of the EBC system (over ten years). Experienced personnel from Vital Statistics and the Program Coordinator will include training in collecting newborn hearing screening data from hospital records and transmitting the data by EBC software.
To increase the availability of training opportunities and assure that the training is accessible to persons throughout the state including in rural areas, this project will use the interactive video sites established throughout the state. For example, for training hospital technicians to complete hearing screening, an expert at a large hospital could demonstrate actual (live) newborn hearing screening via the telemedicine system to hospitals throughout the state including those in rural areas. When there is a local audiologist, hands-on training at the conclusion of the interactive video training could also be incorporated. This training strategy reduces travel time by the trainer and by the technicians, increases standardization of hearing screening protocols, and because of its efficiency, allows for more frequent training opportunities to meet the needs (and various schedules) of the technicians. Another example would be a forum of hospital nurses and families to discuss strategies for informing families about hearing screening, what it means to be referred for additional screening and/or assessment, and available local resources.
This project will link with professional organizations such as the Kansas Hospital Association, the Kansas chapter of Otolaryngology, and the Kansas Speech-Language-Hearing Association to provide training opportunities to these groups of people. Their annual meetings frequently provide the best venue for disseminating information to a large number of the profession. The information shared will not only include hearing screening protocols, implications of hearing loss, and follow-up protocols, but also the family perspective about hearing loss. Families as presenters would be a standard of practice.
This project will develop written materials to: (a) provide information to all families about hearing, hearing milestones, risk indicators for hearing loss, and what to do if the family has concerns about their child=s hearing; (b) provide information to all families whose newborn is referred for further testing including the importance of having the follow-up audiologic assessment, resources available to access and fund audiologic assessment, basic information about hearing loss, and the risk indicators for hearing loss; (c) provide information to families whose infant has a diagnosed hearing loss, including accessing a medical assessment, personal amplification options, community based early intervention services, and the family=s role in program planning (the individualized family service plan or IFSP). Such materials will be available in languages other than English to meet the needs of under-represented populations in the State.
ATTACHMENT "E"
STATE: KANSAS PERSONNEL ALLOCATION CHART
Project Title: Kansas Newborn Hearing Screening and Intervention Project
Project Director: Kim M. Sykes, MA, CCC-A, Coordinator, Sound Beginnings Newborn Hearing Screening Program (SBNHS)
Budget Period: 3/31/01 to 3/30/02
|
OBJECTIVES, GOALS |
Staff by Title and Consultants shown in Number of Days |
||||||
| Contract KDHE Info System Program Coordinator Program ConsultantVital Statistics |
|||||||
| Objective 1: Assist with Modification of current EBC data system | 5 days | ||||||
| Activity 1.1: Modification of current EBC software | Genesis | ||||||
| Activity 1.2: Modify Vital Statistics database | 5 days2 days1 day | ||||||
| Activity 1.3: Modification of Hospital Worksheet | State Printer1 day | ||||||
| Activity 1.4: Modification of Birth Certificate stock | State Printer1 day | ||||||
| Activity 1.5: Pilot EBC software | Genesis1day4 days | ||||||
| Activity 1.6: Purchase/use Oz data management | Oz10 days220 days | ||||||
| Activity 1.7: Train hospital clerks | 15 days30 days | ||||||
| Objective 2: Data transmission of non-EBC data at 11 largest hospitals | |||||||
| Activity 2.1: Develop Internet format | 5 days2 days | ||||||
| Activity 2.2: Train nursing staff at 11 hospitals | 25 days | ||||||
| Activity 2.3: Train SBNHS support staff on data entry | 2 days2 days2 days | ||||||
| Activity 2.4: Monetary award to level B (19) hospitals | 5 days2 days1 day | ||||||
| Objective 3: Training and information dissemination | |||||||
| Activity 3.1: Contract for Parent to Parent Program | Families Together3 days1 day | ||||||
| Activity 3.2: Identify family partners | Families Together5 days | ||||||
| Activity 3.3: Develop, print, disseminate "risk indicators" for late onset and progressive hearing loss brochure | State Printer30 days5 days3 days10 days | ||||||
| Activity 3.4: Develop, print, disseminate "did not pass screening" brochure | State Printer30 days5 days3 days10 days | ||||||
| Activity 3.5: Training for hospital personnel regarding hearing screening protocols | 20 days2 days1 day5 days | ||||||
| Activity 3.6: Professional training | 20 days1 day5 days | ||||||
| Activity 3.7: Monitor Parent to Parent Program | 5 days | ||||||
ATTACHMENT "F"
PROJECT ACTIVITIES TIME ALLOCATION TABLE
Project Title: Kansas Newborn Hearing Screening and Intervention Project
Project Director: Kim M. Sykes, MA, CCC-A, Coordinator, Sound Beginnings Newborn Hearing Screening Program (SBNHS)
Budget Period: 3/31/01 to 3/30/02
| OBJECTIVES, GOALS |
START DATE |
COMPLETION DATE |
MONITORING AND EVALUATION METHODOLOGY |
| Objective 1: Assist with modification of the current EBC data system | 3/31/01 | 3/30/02 | Modified at EBC Hospitals, data transmitted on newborns |
| Activity 1.1: Assist with modification of the current EBC software | 3/31/01 | 6/30/01 | Completion of task - SBNHS data elements added |
| Activity 1.2: Modify Vital Statistics database | 3/31/01 | 6/30/01 | Completion of task - SBNHS receive data from Vital |
| Activity 1.3: Assist with modification of Hospital Worksheet | 3/31/01 | 6/30/01 | Completion of task - Worksheet includes SBNHS data |
| Activity 1.4: Assist with modification of Birth Certificate stock | 3/31/01 | 6/30/01 | Completion of task - Birth Certificate stock includes SBNHS |
| Activity 1.5: Pilot EBC software | 7/01/01 | 9/30/01 | Modifications function |
| Activity 1.6: Purchase and use of commercially data management - OZ | 3/31/01 | 6/30/01 | Completion of task - Reports on outcome indicators for all infants (EBC, non-EBC screening, NICU) and follow-up (audiologic/medical/assessment, early intervention |
| Activity 1.7: Train hospital clerks | 1/01/02 | 3/30/02 | Hospitals continue to transmit screening data |
| Objective 2: Data transmission of non-EBC data at 11 largest hospitals | 3/31/01 | 03/30/02 | 11 Kansas hospitals are sending non-EBC data to State |
| Activity 2.1: Develop Internet format | 3/31/01 | 9/30/01 | Format is developed |
| Activity 2.2: Train nursing staff at 11 hospitals | 9/30/01 | 3/30/02 | 11 Kansas hospitals effectively sending non-EBC data to State (internet, mail, or fax) |
| Activity 2.3: Train SBNHS support staff on data entry | 9/30/01 | 3/30/02 | Data are entered into SBNHS database and can be managed |
| Activity 2.4: Monetary award to level B (19) hospitals | 9/30/01 | 3/30/02 | Hospital indicates use of funds for screening equipment, data management equipment, training or supplies for program implementation or enhancement and reports all related award activity to state. |
| Objective 3: Training and information dissemination | 3/31/01 | 3/30/02 | At least six strategies are implemented |
| Activity 3.1: Contract for Parent to Parent Program | 3/31/01 | 6/30/01 | Contract is in place |
| Activity 3.2: Identify family partners | 3/31/01 | 6/30/01 | Family partners identified |
| Activity 3.3: Develop, print, disseminate "risk indicators" for late onset and progressive hearing loss brochure | 7/01/01 | 12/31/01 | Brochures available statewide |
| Activity 3.4: Develop, print, disseminate "did not pass screening" brochure | 7/01/01 | 3/30/02 | Brochures available statewide |
| Activity 3.5: Training for hospital personnel regarding hearing screening protocols | 7/01/01 | 12/31/01 | Training is completed; participants rate training as beneficial |
| Activity 3.6: Professional training | 7/01/01 | 3/31/02 | At least two presentations with evaluation as beneficial |
Training must be ongoing due to personnel turnover, new data, and refinements in the system. This project will develop the infrastructure for training and materials development and dissemination to allow for a sustainable system after the life of the grant.
9K: Evaluation Plan
Project goal (a) is to develop an efficient, effective, and sustainable system that documents that all infants with parental consent have a physiologic screening for hearing prior to hospital discharge, outpatient referral screening within one month of birth, and referral and follow-up for assessment and intervention services. The related objectives are in regard to the use of electronic and non-electronic transmission and management systems for data. Progress toward the goal will be evaluated by:
Outcomes are a systems change (implementation of universal newborn hearing screening and intervention), and because of this systems change, Kansans will know the hearing health of their newborns.
Project goal (b) is that families, professionals and support personnel are informed participants in newborn hearing screening; the related objective relates to the provision of training (print and verbal). Progress toward the goal will be evaluated by:
These will demonstrate a systems change (implementation of universal newborn hearing screening and intervention by knowledgeable personnel), and because of this systems change, Kansans will know the hearing health of their newborns.