Title: Integrated Services for Children with Special Health Care Needs: Priority: Universal Newborn Hearing Screening and Intervention
Grant No.: CFDA 93.251
Grantee: Oregon Health Division
Project Director: Donalda Dodson, RN, MPH
Center for Child and Family Health
Oregon Health Division, 800 NE Oregon St., Suite 825
Portland, OR 97232
Phone: 503-731-4016
Fax: 503-731-4083
E-mail: donalda.dodson@state.or.us
WWW site:
Title V Agency: http://www.ohd.hr.state.or.us/ccfh/
Title V for CSHCN: http://www.ohsu.edu/cdrc/
Project period: 4 years
Budget Period from: 3-31-2001 to 3-30-2005
4.1 PROJECT ABSTRACT
4.1.1. Summary of Project Narrative
A. Organizational Setting
The Oregon Universal Newborn Hearing Screening and Intervention project will be administered by the the Center for Child and Family Health [CCFH] of the Oregon Health Division [OHD] (Oregon's Title V agency), in collaboration with the Child Development and Rehabilitation Center (CDRC) at the Oregon Health Sciences University.
B. Purpose
The purpose of the Oregon Universal Newborn Hearing Screening and Intervention project grant request is to continue development and implementation of Oregon's Early Hearing Loss Detection and Intervention (EHDI) program which works to ensure that every child born in Oregon receives physiologic hearing screening by age 30 days, is referred and receives diagnostic audiological evaluation by age 3 months, and then is enrolled in for appropriate Early Intervention services by age 6 months.
The grant funds will be used to: 1) support personnel to carry out the grant activities inclduing infant follow-up and family support, 2) develop and disseminate educational materials, 3) conduct trainings and conferences, 4) facilitate data system operations and integration, and 5) maintain the broad-based Newborn Hearing Screening Advisory Committee.
The major anticipated benefits of this project are to: 1) to ensure that newborns in Oregon are offered and receive screening for hearing loss, including newborns born in small hospitals and at home, 2) to ensure that affected newborns receive appropriate diagnostic testing by 3 months of age and early intervention services before 6 months of age, 3) to promote connection of infants with hearing loss to a medical home, 4) to promote complete medical evaluation of infants with hearing loss, 5) to ensure that families of infants with hearing loss have access to appropriate resources and supports, 6) to ensure that data is available to allow for follow-up and for evaluation of the EHDI program, and 7) to strengthen collaborative relationships between the Health Division, CDRC, Early Intervention and other partners. The ultimate anticipated benefit is that children with hearing loss will develop skills needed to communicate effectively and will enter school ready to learn.
Problem
Congenital hearing loss affects approximately 120 newborns out of the 45,000 infants born in Oregon each year. Intervention begun prior to 6 months of age results in significantly better communication skills than delayed intervention. In 1999, only 25% of infants had their hearing screened and only 12 infants were enrolled in Early Intervention services by 6 months of age. The 1999 Oregon Legislature passed legislation to begin nearly universal hearing screening in Oregon. As of July 2000, 42 hospitals with 93% of births in Oregon have newborn hearing screening programs in place. The next challenges are to screen all newborns and to ensure that all newborns who have a positive screening test receive diagnostic testing, and that those infants identified with hearing loss are enrolled in early intervention services. Experience in other states suggest that without a data system and follow-up mechanisms in place, half of the infants do not get diagnostic services in a timely fashion and others fail to make it from diagnosis to intervention.
Primary Goals and Objectives
Goal 1: Every newborn receives physiologic hearing screening conducted within thirty days of birth
Goal 2. Every infant not passing the screening test receives diagnostic evaluation by 3 months of age
Goal 3. Every eligible infant with hearing loss receives early intervention services by 6 months of age
Goal 4: Every infant identified with hearing loss is connected to a medical home
Goal 5: Every infant identified with hearing loss receives a thorough medical evaluation for the cause and appropriate management of hearing loss
Methodology
The Oregon Health Division will work with the Newborn Hearing Screening Advisory Committee to set direction on activities and provide ongoing monitoring of activities. The Program Coordinator will facilitate the Advisory Committee and lead the grant activities. Systems to ensure that infants born in small hospitals, birthing centers and at home receive hearing screening will be developed. Educational materials will be developed for families and providers. The Health Division will sponsor a family conference providing opportunities for family-to-family networking and family-focused educational sessions. Audiologists and other staff representing hospital screening programs will be trained as Newborn Hearing Screening Consultants to provide on-site technical assistance and training for screening technicians. The Center for Public Health Laboratories will upgrade the newborn screening data system to include newborn hearing data and new data entry staff will be hired to support the data system. The Advisory Committee will advocate for legislation to authorize reporting of individual level diagnostic and early intervention data to the Health Division. The hospital screening data will be linked with diagnostic and intervention data as well as other child and family health data for follow-up and program evaluation purposes. A Family Support Coordinator (public health nurse at CDRC) will be responsible for public health nurse training, family support resource development and implementation of a follow-up system for infants identified with hearing loss . Staff at the Health Division will provide follow-up for newborns who have not been screened and infants who have not followed up with diagnostic testing. Plans will be developed for long-term funding of the EHDI program.
Evaluation
Evaluation will be based on both quantitative and qualitative measures. Quantitative measures include, but are not limited to, the percent of newborns screened prior to 30 days of life, the percent of infants who receive appropriate diagnostic testing prior to 3-4 months of age, the percent of eligible infants who receive early intervention services prior to 6 months of age, and the percent of infants with hearing loss who have a medical home. Qualitative and process measures include, but are not limited to, the production of educational materials, the number of trainings and conferences conducted, the number of providers participating in educational activities, the implementation of an integrated data system, and family satisfaction with services.
4.1.2. Text of Annotation
The Oregon Universal Newborn Hearing Screening and Intervention project will increase public and provider awareness of the importance of hearing screening within 30 days of birth and early intervention before 6 months of age for infants with hearing loss. This program seeks to improve the number of newborns receiving hearing screening at birth and the number of infants receiving appropriate diagnosis, evaluation and connection to early intervention programs and family support services.
4.1.3. Key Words:
infant hearing loss; newborn hearing screening; early intervention; Early Hearing Detection and Intervention Program; family supports; Newborn Hearing Screening Advisory Committee; integrated data systems; follow-up systems
OREGON NARRATIVE
4.1 PROJECT NARRATIVE
4.2.1. Purpose of the Project
The purpose of the Oregon Universal Newborn Hearing Screening and Intervention (UNHSI) grant request is to continue development and implementation of Oregon's Early Hearing Loss Detection and Intervention (EHDI) program, which works to ensure that every child born in the State of Oregon receives physiologic hearing screening within thirty days of birth, is referred for any necessary diagnostic audiological prior to 3 months of age, and then is referred for any necessary early intervention evaluation and services by age 6 months. The program seeks to ensure that all services are coordinated, family-centered and culturally appropriate. The ultimate goal is for all infants and young children to have the services and supports that they need for optimal development and readiness to learn.
The Oregon Health Division's Center for Child and Family Health proposes to educate expectant parents, parents of newborns and primary care providers regarding the importance of early screening and follow-up; to provide ongoing training for newborn screening technicians, audiologists, public health nurses, early intervention specialists and others involved in the system; to assist hospitals in implementing newborn hearing screening; to expand screening to all newborns; to develop a centralized data system which includes collection of individual level data from screening, diagnosis and intervention services and which is linked to other child and family health data including newborn metabolic screening; to develop a system of follow-up utilizing the data system to ensure that infants and families are receiving services; and to ensure sustainability of the EHDI program.
There are approximately 45,000 births per year in the state of Oregon. In 1999, less than 25% of Oregon's newborns received hearing screening. Only six of sixty-three hospitals and birthing centers provided universal newborn hearing screening; some high-risk neonates were also screened. On July 1, 2000, legislation (HB 3246) mandating hearing screening for all newborns born in Oregon hospitals with greater than 200 births took effect. Currently, forty-two hospitals have universal newborn hearing screening programs. Approximately 93% of all Oregon births in occur in these forty-two hospitals. Thirteen hospitals with less than 200 births/year and three birthing facilities are currently not providing screening services.
Approximately 120 infants with hearing loss are born in Oregon each year. It is anticipated that universal newborn hearing screening will identify the majority of these infants. Making sure infants get from screening to diagnosis to early intervention services is the next hurdle. Experience from other states suggests that without a system to track and monitor individual children, only half of the newborns who have a positive hearing screening test actually receive diagnostic evaluation and some infants who are diagnosed with hearing loss do not go on enroll in early intervention. Studies demonstrate that early intervention initiated before six months of age is crucial for optimal development of speech, language and communication skills. A high priority for Oregon then is development and implementation of a data system which allows for individual tracking and follow-up to ensure that these children get the services they need.
While HB 3246 did mandate hospital reporting, on an annual basis, of the number of children tested and the number with abnormal results, the law did not require mandatory reporting of the individual level data that will be necessary for follow-up. Each educational institution providing early intervention services is required to report to the Health Division, on an annual basis, the number of children enrolled with a diagnosed hearing loss and receiving early intervention services. Again, individual level early intervention data is not required. As the law currently stands, diagnostic facilities are not required to provide any data to the Health Division.
Oregon has taken the first steps in establishing universal newborn hearing screening and intervention by requiring and implementing newborn hearing screening programs in larger hospitals. Much still needs to be done to ensure that all infants with hearing loss are identified and connected with resources. HB 3246 charges the Health Division with the lead responsibility for the newborn screening program, but no funds for this purpose were appropriated. The Health Division has been awarded a 5-year grant from the Centers for Disease Control and Prevention for personnel to develop an EHDI data system. This MCHB grant would add resources necessary for education, training and infant follow-up. In addition, the grant would assist with getting an integrated newborn hearing screening/newborn metabolic screening data system up and running.
The grant funds will be used to (1) support personnel to carry out the grant activities, including data operations, infant follow-up and family support, (2) develop and disseminate educational materials, (3) conduct trainings and conferences, (4) upgrade the newborn screening data system at the Center for Public Health Laboratories to include newborn hearing screening data, and (5) maintain the broad-based advisory committee.
The anticipated benefits of this project are to: (1) to ensure that newborns in Oregon are offered and receive screening for hearing loss, including newborns born in small hospitals, birthing centers and at home, (2) to ensure that newborns who have positive screening for hearing loss receive appropriate diagnostic testing by 3 months of age, (3) to ensure that infants who are diagnosed with hearing loss enter early intervention services before 6 months of age, (4) to promote connection of infants with hearing loss to medical homes (i.e., primary care pediatric providers), (5) to ensure that infants with hearing loss receive medical evaluation, (6) to ensure that families of infants with hearing loss have access to appropriate resources and supports, (7) to ensure that family choice and right for privacy are honored, (8) to ensure that data is available to allow for follow-up and for evaluation of the EHDI program, (9) to ensure that staff involved in the state EHDI system are well-trained, (10) to ensure that adequate short- and long-term funding is available to support program activities, and (11) to strengthen the links between partners in the EHDI system including the state program office at the Health Division, CDRC, hospitals, diagnostic centers, early intervention facilities, and families. The ultimate anticipated benefit is that children with hearing loss will develop skills needed to communicate effectively and will enter school ready to learn.
4.2.2. Organizational Experience and Capacity
In Oregon, the Title V responsibilities are shared between the Oregon Department of Human Services, Health Division, Center for Child and Family Health (CCFH) and the Child Development and Rehabilitation Center (CDRC) in the Oregon Health Sciences University. While CCFH oversees the Maternal and Child Health responsibilities, CDRC administers Oregon's programs for Children with Special Health Care Needs (CSHCN).
The mission of CCFH is to provide leadership for improving health outcomes for women, children, and families. CCFH has six sections that work together closely: Women=s and Reproductive Health; Perinatal and Child Health, Adolescent Health; Dental Health; Immunization; and WIC. CCFH coordinates its activities with other public and private agencies committed to the health of women and children. All these programs cooperate closely in planning, resource sharing, program monitoring and evaluation, and funding of special projects. In addition, these programs provide outreach services and funding to local health departments and other primary care service agencies and seek to take an integrative approach to serving women, children and families.
The purpose of CDRC is to assure that persons in Oregon with developmental disabilities and other disabling conditions are identified and assured ready access to exemplary and coordinated services through programs of public health, clinical service, education, research and care coordination.
Experience with Newborn Hearing Screening
From 1989 through 1992, OHD received a portion of grant #MCJ-495037-01, from MCHB through Utah State University, to create a Newborn Hearing Registry. CDRC and OHD implemented the Oregon Newborn Hearing Registry in 1990. From 1990 until 1996, the Health Division mailed approximately 300 letters each month to parents of newborns with the following risk factors associated with hearing loss identified from birth certificates: low birth weight, gestational age less than 36 weeks, family history of hearing loss, transfer to intensive care unit, low APGAR scores, assisted ventilation over 30 minutes, and newborn conditions such as infection, birth injury, and congenital anomalies. The letter told the parent that the child might be at risk and suggested that they have the infant's hearing screened. Unfortunately, the number of at-risk children who ultimately received follow-up declined each year; out of over 4,000 letters in one year, less than 100 newborns received screening. The Registry appeared to identify, at most, two infants each year who would not have been identified through any other source. After engaging community audiologists in a needs assessment, it was decided to cease the Newborn Hearing Registry and to pursue legislation to mandate universal screening.
During the 1997 Oregon Legislative Session, a bill passed both the House and the Senate calling for a study to look at the value of universal newborn hearing screening, technological resources currently available, and options for implementing a statewide screening program. The bill was eventually vetoed by the Governor due to last-minute, unrelated amendments. The Health Division subsequently made a commitment to legislators supportive of the study bill to look at the issue during the interim. The Health Division contracted with CDRC to convene an advisory committee to review the issue.
In October 1998, the Oregon Advisory Committee on Universal Detection of Newborns with Hearing Loss ("1998 Advisory Committee") produced a report with the results of this study, recommending that Oregon should move towards the National Institute of Health and American Academy of Pediatrics recommendations to implement a program to detect hearing loss in newborn babies. The report recommended that the program be phased in over six years, expanding to include all birthing hospitals and birthing centers. It was also recommended that the Health Division monitor the system to ensure newborns were screened, to coordinate the follow-up of children with abnormal screening results, and to collect data to evaluate the program. The recommendations were welcomed by a key state legislator and a somewhat modified bill was passed into legislation in summer 1999 (See Appendix 6).
During the months from passage of House Bill 3246 until July 2000 when it took effect, activities centered on gearing hospitals and providers up to implement universal newborn hearing screening programs. The Health Division appointed a Program Coordinator, Dr. Martin Lahr, and a permanent Newborn Hearing Screening Advisory Committee was established to assist with these efforts. An administrative rule was promulgated by the Health Division to define roles, responsibilities and procedures related to the newborn screening legislation (See Appendix 6). The Program Coordinator and Advisory Committee worked to develop materials informing providers about the new law, including a summary in the Health Division's publication, the CD Summary, sent to all physicians in Oregon. Standardized forms and protocols for hospital reporting and diagnostic testing/reporting as well as parent waiver of screening and release of information forms were also developed (See Appendix 8). Two pages (one in English and one in Spanish) about the importance of newborn hearing screening were included in the new Health Division publication, the Newborn Handbook, which is provided free-of-charge to hospitals, birthing centers and at-home births, for all new parents. A one page handout encouraging parents of infants who have not been screened to follow-up for this testing was developed and distributed to all facilities not currently providing screening services. A listing of the diagnostic centers which follow the Advisory Committee's recommended protocol for diagnostic testing was created and provided to all screening sites. Many of these materials were put on the Health Division website.
To ensure that hospitals were prepared to initiate screening programs, the Oregon Academy of Audiology (OAA) sponsored a February 2000 workshop on the programmatic and technical aspects of a newborn hearing screening program. One of the audiologists on the Advisory Committee was instrumental in conducting this workshop. The Health Division's program coordinator assisted the OAA in contacting the hospitals mandated to provide screening by July 2000 and encouraged their participation in the workshop.
By July 1, 2000, forty-two hospitals had begun screening. Hospitals have committed significant resources to these programs, including equipment purchase, personnel and training. Hospitals are using either Oto-Acoustic Emissions (OAE) testing or Automated Auditory Brainstem Response (AABR) testing for their screening process. If a newborn fails to pass an initial screening test, protocols call for a repeat screening test, either several hours later if using the same method, or immediately, if using a different method. Staff, including non-health professionals who have received training in newborn hearing screening, are performing the screening tests.
Data from Oregon's Pregnancy Risk Assessment and Monitoring System (PRAMS) survey indicates a clear positive trend in the percent of newborns receiving screening even prior to the official starting date of the newborn screening legislation. A randomized sample of postpartum mothers indicate that 64.7% of newborns born in February-March 2000 received hearing screening, while 83% of newborns born in June-early July 2000 received screening.
Experience with Other Screening Programs
The Oregon Health Division has extensive experience in coordinating and supporting comprehensive screening programs, including the Newborn Screening Program, the Childhood Lead Screening Program, and the Breast and Cervical Cancer Screening Program. The Newborn Screening Program will provide the most valuable guide in planning, implementation, and ongoing evaluation of the state's universal newborn hearing screening program. The Newborn Screening Program is located in the Center for Public Health Laboratories (CPHL), a center in the Health Division. The Program screens all newborns for hypothyroidism, galactosemia, phenylketonuria, biotinidase deficiency, maple syrup urine disease, and hemoglobinopathies. CDRC staff work closely with the program to track, follow-up and ensure medical intervention on these cases. The MCH Epidemiologist has worked closely with the Newborn Screening Program to link newborn screening with birth certificate data to analyze breast-feeding patterns in Oregon through data collected at the time of the screening tests, and to locate women asked to complete the PRAMS (Pregnancy Risk Assessment Monitoring System) survey of postpartum women.
Other Relevant Experience
CCFH and CDRC serve on the State Interagency Coordinating Council for Early Intervention (SICC). CDRC has significant experience working with the Oregon Department of Education, the lead agency for the Infants and Toddlers with Disabilities Program established under Part C of the Individuals with Disabilities Education Act (IDEA).
CDRC is the home of Oregon's Family Voices, a family support organization for families with children with special health care needs. The two coordinators of Family Voices have promoted family involvement in establishing managed care policies and practices, gathered information about the needs and knowledge of CSHCN families in managed care and served on local and national committees related to health care reform. The Family Voices coordinators, along with other parents, have been valuable partners in planning the Oregon State Children with Special Health Care Needs statewide needs assessment, interpreting the findings and working with staff in an advisory capacity.
CCFH and CDRC, as part of a Title V block grant five-year planning process, have recently conducted a statewide needs assessment to determine priority issues goals, objectives, and indicators for improving and monitoring health status of the maternal and child health population. This process relied upon extensive input by community and local stakeholders to prioritize health issues and problems.
CCFH and CDRC are collaborating under the State Systems Development Initiative (SSDI) grant to develop an Oregon Healthy Families Surveillance System to measure trends in health status of the MCH population. CCFH and CDRC selected, as a priority for the SSDI grant, to work on the measure related to the percent of newborns screened for hearing loss.
Other current projects include the FamilyNet Data Integration Project. FamilyNet is a client-based system designed to collect encounter data from programs administered by the CCFH, CDRC and other agencies, including Oregon Department of Education's Early Intervention program. It is anticipated that the FamilyNet client data system will roll out WIC and Immunization modules to local health departments in spring 2001, with other modules including a Perinatal module and a Child and Family Services module under development. The Child and Family Services module will include data from Babies First! and CaCoon nurse home visiting programs, Healthy Start home visiting program, and Early Intervention. Preliminary plans are underway to include data from newborn metabolic screening and newborn hearing screening in the Child and Family Services module of FamilyNet, linking these identification data with service data (See Appendix 9).
CCFH and CDRC have experience developing collaborative relationships with medical home provider networks within the state. The Immunization Alert registry is a CCFH project which has required developing close working relationships with private providers across the state. The CDRC CSHCN program administers the statewide Care Coordination program (CaCoon) and sponsors community clinics at twelve sites under the Community Connections Network program. The CaCoon program provides public health nurse home visits to CSHCN and their families for assessment, nursing intervention and care coordination with the child's primary care provider, specialty providers and social service resources. CDRC is currently spearheading an effort to promote the "medical home" concept to primary care pediatric providers in the state of Oregon, particularly for providers who care for children with special health care needs. CDRC has proposed to develop local resource teams to assist providers in delivering continuous, comprehensive, coordinated, family-centered, culturally appropriate care.
This UNHSI grant will strengthen and build upon the experience and capacity of the Health Division's and CDRC's ongoing efforts. The EHDI Program Coordinator will serve as a facilitator to ensure the implementation of the grant is well integrated with other screening and surveillance systems in the state.
4.2.3. Administration and Organization
The Oregon Health Division ("Health Division"), which is part of the Oregon Department of Human Services, will administer the UNHSI grant through its Early Hearing Loss Detection and Intervention (EHDI) Program in the Center for Child and Family Health. The Health Division has a number of centers, including the Center for Child and Family Health, the Center for Disease Prevention and Epidemiology, the Center for Environmental Health, and the Center for Public Health Laboratories. The program will function under the auspices of the Center for Child and Family Health (CCFH), which is the state's Title V agency. CCFH's Perinatal and Child Health Section will be responsible for the day-to-day operations. This program will work closely with the Oregon Children With Special Health Needs program at the Child Development and Rehabilitation Center (CDRC) of the Oregon Health Sciences University. A public health nurse at CDRC will be dedicated to work on family support and training aspects of this project. The CaCoon program director will serve as the supervisor for this position (See Appendix 1).
The UNHSI grant project will be under the overall leadership of the CCFH Director, Donalda Dodson and the CDRC Director, Dr. Jerry Sells. The EHDI Coordinator (to be hired) will direct the activities of the grant.
A comprehensive advisory committee, has been assembled to advise on the development and implementation of the EHDI program (See Appendix 2). The Newborn Hearing Screening Advisory Committee ("The Advisory Committee") is composed of state and local representatives from audiology, neonatology, pediatrics, education/early intervention, speech-pathology, hospitals, and insurance. In addition, there are representatives from the oral deaf community and signing deaf community, and parents and relatives of deaf persons. The Advisory Committee initially formed several subcommittees to work on the specific details of implementing a comprehensive screening program, including subcommittees on Hospital Implementation, Parents and Providers, Public Education, Rules, Reimbursement, and Networking with Service Organizations. These subcommittees have played and will continue to play an important role in developing the program and ensuring that the activities of the EHDI Program are consistent with the grant goals and objectives. The Advisory Committee has had substantial input into the preparation of this grant and other grant applications. The Advisory Committee meets monthly at the present time, but may meet bimonthly in subsequent years. The subcommittees are meeting more or less frequently, as needed. The Oregon Department of Education's Early Intervention and Special Education Program plays a critical role on the Advisory Committee.
4.2.4. Available Resources
A number of resources at the Oregon Health Division are available for this project including staff, equipment, and space. A brief list follows:
Donalda Dodson, RN, MPH, Assistant Administrator and Director of the Center for Child and Family Health/Title V Director, will serve as the project co-director for the grant.
Clifford J. Sells, MD, MPH, Director of the Child Development and Rehabilitation Center, will serve as the project co-director and was Chair of the 1998 Advisory Committee.
Kenneth D. Rosenberg, MD, MPH, Maternal and Child Health Epidemiologist, participated on the 1998 advisory committee, helped develop the recommendations to implement newborn hearing screening in Oregon, and recently conducted a survey of audiologists. Dr. Rosenberg will serve as the project consultant.
Astrid Newell, MD, Acting Perinatal and Child Health Section Manager/Medical Consultant, whose background is in family medicine, will oversee day-to-day operations of the grant project and will provide consultation and assistance in the development of educational materials for families and primary care providers
Cathy Renken, RN, MPH, Assistant Administrator at CDRC and Director of the CaCoon Program for Children with Special Health Care Needs. She will serve as a consultant for the project and will supervise the day-to-day activities of a public health nurse to be dedicated to the project beginning in the second half of year 1.
Judi Tuerck, MS, RN, Assistant Professor at OHSU and Metabolic Clinic Manager. She plays a key role in the follow-up of newborns identified with genetic metabolic conditions, including following up with newborns born at home for screening. Her expertise in this area will be essential as efforts are made to coordinate newborn hearing screening with newborn metabolic screening and to develop follow-up systems. She will serve as a consultant to the project.
EHDI Program Coordinator: A recruitment for this position is currently underway. Resources are in place to support a 0.6 FTE Program Technician 2 with audiology background preferred.
EHDI Research Analyst: A recruitment for this position is also underway. Resources are in place to support a 1.0 FTE Research Analyst who will devote 0.5 FTE to the EHDI project and 0.5 FTE to data integration projects.
Space and Equipment
Space available to the project includes existing office space for all anticipated personnel. The Oregon Health Division maintains several general purpose meeting rooms in which the Advisory Committee and its subcommittees meet. Computers are available for the EHDI Program Coordinator at CCFH, Medical Lab Technician at CPHL and for the Family Support Coordinator at CDRC.
4.2.5. Identification of Target Population and Service Availability
The target population is Oregon newborns and infants with hearing loss and their families. In order to identify these children, CCFH's goal is to ensure that hospitals screen all newborns for hearing loss prior to discharge and at least within thirty days of birth. As of July 1, 2000, 39 hospitals with more than 200 live births per year and 3 smaller hospitals have implemented universal screening programs. Approximately 93% of newborns in Oregon are born in these hospitals; the remainder of newborns are born in smaller hospitals, birthing centers or at home (~700 births/year). Each hospital is responsible for the costs of the screening, including equipment, personnel, and training. No newborn is denied screening because of inability to pay. There are twelve audiological facilities capable of performing diagnostic hearing tests on infants. Eight public and three private Early Intervention facilities provide services to children who are deaf or hard of hearing. Each county has access to local public health services including Care Coordination (CaCoon) public health nurse services for children with special health care needs.
4.2.6. Needs Assessment
In 1990, the Oregon Newborn Hearing Registry (testing based on risk factors) found that the average age of identification of hearing loss in Oregon was 30.5 months, consistent with previous national studies.
In 1996, Oregon audiologists were surveyed regarding the state of newborn hearing screening. It was then decided to discontinue the Oregon Newborn Hearing Registry and to instead pursue legislation mandating universal screening.
In 1998, the Oregon Advisory Committee on Universal Detection of Newborns with Hearing Loss conducted an informal assessment to determine the status of hospital-based newborn hearing screening. The Committee released a report in October 1998. This report detailed the need for early identification of hearing loss and the number of infants at risk. Further, this report reviewed other states' experiences and detailed the feasibility of screening, the availability of cost-effective technology, and the necessary aspects of a statewide program. The Advisory Committee called for a phased-in implementation of universal newborn hearing screening (6-8 pilot hospitals in Years 1-2, all hospitals in Years 3-4 and all births in Years 5-6), with mandatory reporting to and oversight by the OHD. The report was presented to the 1999 Oregon Legislative Assembly. The data provided for this report were also used by the Health Division to report on the newborn hearing screening performance measure in the annual Maternal and Child Health Block Grant.
The 1999 Legislative Assembly did mandate screening for most newborns but did not fully implement the 1998 Advisory Committee's recommendations. Until the legislature mandates individual-level data tracking, CCFH will ask hospitals, diagnostic centers and early intervention facilities to provide voluntary information. CCFH will use the information collected to identify additional unmet needs and limitations of the system.
In November 1999, the Health Division conducted a survey of audiologists in Oregon to explore the number and geographic distribution of audiologists with experience in newborn hearing screening and who wanted to learn how to do this. Based on the results of this survey, training such as the OAA February 2000 workshop developed.
In September 2000, volunteers from the Advisory Committee conducted a phone survey with hospitals who have implemented screening programs. The survey showed that a number of hospitals have "refer rates" which are significantly higher than the goal of 5% or less. It is felt that this reflects the relative inexperience of many screeners and demonstrates a need for continuing training and practical hands-on experience for screening technicians.
Currently, a report is being prepared for the 2001 Legislature which highlights the current status of newborn screening as of November 2000 and addresses the perceived needs, including mandatory individual level data collection and tracking, development of follow-up systems, and reimbursement of hospitals for screening costs such as equipment, personnel, training and data systems (See Appendix 7).
It is unknown at this time whether hearing loss disproportionately affects infants of different racial and ethnic backgrounds in Oregon. Efforts to evaluate this are needed as are systems to ensure that once an infant of any racial, ethnic or cultural background is identified as needing intervention services, these services are initiated promptly and appropriately.
4.2.7. Collaboration and Coordination
CCFH has established an ongoing Newborn Hearing Screening Advisory Committee. This committee includes representatives of the Oregon Department of Education's Office of Special Education (early intervention), Regional Programs for Children who are Deaf or Hard of Hearing, Oregon Pediatric Society, Oregon Medical Association, Oregon Speech Language Hearing Association, Oregon Association of Hospitals and Health Systems, Office of Medical Assistance Programs (Medicaid), several hospitals, the Oregon Grange, the Oregon Lions Club, the March of Dimes, deaf-education professionals, clinical audiologists, Alexander Graham Bell Association for the Deaf, Oregon Association of the Deaf, two private Early Intervention programs, deaf adults and parents of deaf children. The committee is chaired by Patrick Stone, Ed.D., Executive Director of the Tucker-Maxon Oral School. The Advisory Committee is an active group of advocates who are committed to working together and with the Health Division on creating a strong EHDI program and statewide system. The Advisory Committee is assisting CCFH in preparing a report to the next session of the Oregon Legislature, in 2001, regarding the current status of newborn screening in Oregon and recommendations for improvements.
CCFH is working closely with the Center for Public Health Laboratories (CPHL) on the development of a data collection system for newborn hearing screening which is coordinated with newborn metabolic screening, utilizing the blood spot form and unique identifier. A combined data capture form is currently in draft version, but is expected to be in use by Spring 2001 (See Appendix 10). It is anticipated that screening information will also be linked with birth certificates using the same unique identifier. In addition, CCFH has been in close contact with other states, particularly Utah, in developing the concept for the integrated newborn screening data system. The newborn screening data system is part of a larger collaborative effort to develop an integrated child and family heath data system (Family Net) (See Appendix 9). Partners in this effort include CDRC, the Oregon Commission on Children and Families and Oregon Department of Education's Early Intervention program.
CCFH continues to work collaboratively with CDRC to provide hospitals with technical information necessary for the operation of newborn hearing screening programs. The strength of CCFH and CDRC's collaboration will be enhanced through this grant project, with the addition of a CDRC staff person to assist with support and follow-up of infants with hearing loss and their families.
The UNHSI grant will be coordinated with other grant efforts including the five-year EHDI grant from the Centers for Disease Control and Prevention which focuses on development and implementation of an EHDI data tracking system. In addition, newborn hearing screening and intervention efforts, particularly in the area of medical and genetic evaluation of infants with hearing loss, will be coordinated with Oregon's genetics planning process which is currently underway and being funded by a grant from MCHB. Oregon is also investigating the feasibility of developing a Birth Defects Surveillance system through grant funding. The experience gained and the data systems developed through this UNHSI grant and the EHDI grant will be utilized as starting points for developing a birth defects project.
4.2.8. Goals and Objectives
The ultimate purpose of Oregon EHDI program is to ensure that all infants with hearing loss have the services and supports they need for optimal development and readiness to learn.
To advance this purpose, the UNHSI grant project has 10 supporting goals and multiple objectives. The objectives are described in more detail in the Methodology Section.
Goal 1: Every newborn receives physiologic hearing screening conducted within thirty days of birth
Objective 1.1. Increase public awareness regarding the importance of early screening for hearing loss (especially expectant and new parents)
Objective 1.2. Increase parent understanding and acceptance of newborn hearing screening (NHS) through family-centered screening protocols
Objective 1.3. Educate health care providers about the importance of early screening for hearing loss and their role in promoting NHS with families
Objective 1.4. Increase the proportion of newborns born in hospitals and birthing centers with fewer than 200 births/year who are screened prior to hospital discharge
Objective 1.5. Increase the proportion of newborns born at home who receive screening prior to 30 days of life
Objective 1.6. Establish a system for follow-up of newborns who have not received screening by 21 days of life
Goal 2. Every infant with a positive screening test for hearing loss receives diagnostic audiologic evaluation by 3 months of age
Objective 2.1. Decrease the proportion of newborns needing diagnostic follow-up by decreasing at least 90% of hospital refer rates to no more than 5%
Objective 2.2. Establish a system to facilitate and track referrals from screening to diagnosis
Objective 2.3. Establish a follow-up system for infants who have not received needed diagnostic evaluation prior to 3 months
Objective 2.4. Identify barriers to infants receiving diagnostic testing and develop a plan to address barriers
Goal 3. Every eligible infant with hearing loss receives early intervention services by 6 months of age.
Objective 3.1. Establish a system to expedite referrals from diagnostic facilities to Early Intervention
Objective 3.2. Establish a follow-up system for infants referred to EI from diagnostic testing who have not enrolled in EI services by 5 months of age
Goal 4: Every infant identified with hearing loss is connected to a medical home and coordinated services for children with special health care needs as appropriate
Objective 4.1. Develop and implement methodologies to identify an infant's medical home and to facilitate connection of infants with hearing loss to medical homes
Objective 4.2. Educate primary care providers of infants with hearing loss about a) the concept of "medical home"and, b) the unique medical and psychosocial needs of infants and children with hearing loss and their families
Objective 4.3. Increase public health nurse home visits to infants with hearing loss and their families for coordination of care
Goal 5: Every infant identified with hearing loss receives a thorough medical evaluation for the cause and appropriate management of hearing loss
Objective 5.1. Educate primary care pediatric providers about the unique medical and psycho-social needs of infants with hearing loss and their families
Objective 5.2. Increase the proportion of infants with hearing loss who have a complete medical evaluation for the cause of hearing loss, including genetic counseling/testing.
Goal 6: Every family who has an infant with hearing loss has access to resources and supports that they need for optimal outcomes
Objective 6.1. Complete a family resource needs assessment and develop a plan to address needs
Objective 6.2. Establish a standardized system to ensure family choice regarding EHDI program participation, data collection and sharing, medical and educational intervention and preferred means of communication for their child.
Objective 6.3. Increase the proportion of families who receive education about hearing loss and information about available resources in a culturally appropriate format
Objective 6.4. Sponsor a family conference with an emphasis on family-to-family networking and family-focused education
Goal 7: Integrated and accurate data is available and utilized to ensure that infants and families are receiving the services that they need for optimal outcomes
Objective 7.1. Collect and analyze required hospital data on an annual basis
Objective 7.2. Pass legislation requiring (or) authorizing the reporting of individual level screening data from hospitals, diagnostic facilities and Early Intervention facilities
Objective 7.3. Implement a centralized data system that:
Goal 8: Staff involved in all phases of the state EHDI system have the knowledge and skills necessary for program success
Objective 8.1. Increase knowledge and skills of state EHDI program staff related to detection of and intervention for newborns/infants with hearing los.
Objective 8.2. Train audiologists and other hearing experts to serve as consultants/mentors for newborn hearing screening (NHS) programs and NHS technicians
Objective 8.3. Facilitate educational updates for audiologists and physicians regarding diagnostic evaluation of infants with suspected hearing loss
Objective 8.4. Train public health nurses about health and education issues affecting infants with hearing loss and their families
Objective 8.5. Educate early intervention specialists about health issues affecting infants with hearing loss and their families
Goal 9: A broad-based Newborn Hearing Screening Advisory Committee is maintained on a permanent basis
Objective 9.1. The Advisory Committee will meet at least quarterly to provide guidance to the EHDI program
Objective 9.2. Families with infants who have hearing loss and consumers with hearing loss are represented on the Advisory Committee
Goal 10. Oregon's EHDI Program is sustainable after grant funds expire
Objective 10.1. Establish adequate hospital reimbursement for newborn hearing screening
Objective 10.2. Secure long-term funding for the state EHDI program
4.2.9. Required Resources
The additional resources required to accomplish the goals and objectives of the Oregon UNHSI grant include personnel, educational materials development, costs of conducting trainings and conferences, data system upgrades, equipment, and supplies.
4.2.10. Project Methodology
Methodology Narrative
The following narrative describes the UNHSI grant goals, objectives and activities. The first four goals are the key goals. Some objectives are identified as " Developmental" indicating that a baseline needs to be developed. A Personnel Allocation table (Attachment E) and Project Activities Time Allocation table (Attachment F) are placed after the Budget Justification in the application.
Goal 1: Every newborn receives physiologic hearing screening conducted within thirty days of birth
Objective 1.1. By March 30, 2002, increase public awareness regarding the importance of early screening for hearing loss (especially expectant and new parents)
Methods: The Program Coordinator will draft educational materials specifically geared to expectant parents, discussing the importance of newborn hearing screening, as well as diagnosis and intervention if needed. The Advisory Committee, through its Parents and Providers Subcommittee and Public Education Subcommittee, will review, amend and approve all materials. The materials will be placed on the Health Division's Newborn Hearing Screening web page. In addition, the Health Division will continue to include information in both English and Spanish in the Newborn Handbook which is distributed to hospitals and then to new parents. Information in the handbook will be reviewed and updated if needed on an annual basis.
Objective 1.2. By March 30, 2004, increase parent understanding and acceptance of newborn hearing screening through family-centered screening protocols
Methods: The Program Coordinator will work with hospitals and screening technicians to promote the involvement of parents/families in the screening procedure. The Program Coordinator will contact all screening sites to review current protocols and to encourage family participation. During training sessions and technical assistance calls, the program coordinator will promote this concept. A method to track family participation will be determined and data will be collected on the percent of screening procedures which included families. Program staff will consider conducting a study of the correlation between family participation in screening with outcomes such as receiving diagnostic testing in a timely fashion.
Objective 1.3. By December 31, 2002, educate health care providers about the importance of early screening for hearing loss and their role in promoting NHS with families
Methods: The Program Coordinator in conjunction with the Advisory Committee and the CCFH Medical Consultant will develop a presentation for pediatric primary care providers about early hearing loss detection and work with the Oregon Pediatric Society, Oregon Academy of Family Physicians and Oregon Nurse Practitioner Association to give the presentation at an annual scientific meeting for each organization. The Program Coordinator will also develop educational materials for prenatal care providers. These materials along with materials developed for expectant parents will be distributed to all prenatal care providers in Oregon. The materials will also be put on the web page to download as needed.
Objective 1.4. By March 30, 2005, increase to at least 90 % the proportion of newborns born in hospitals and birthing centers with fewer than 200 births/year who are screened prior to hospital discharge
Methods: The Advisory Committee will present recommendations to the 2001 Legislature, including a request for state funds to assist small hospitals and birthing centers with the purchase of screening equipment. If the 2001 legislature appropriates funds, the Program Coordinator will provide technical assistance to get new screening programs off the ground, including recommendations for equipment purchase and technician training. If no funds are appropriated, the Coordinator will work with sites to develop a protocol to ensure that all newborns are referred for screening and that data is sent to the Health Division to track screening as in larger hospitals. The Coordinator will keep in contact with sites to assess their progress. The Advisory Committee will consider the merits of requesting a mandate from the 2003 Legislature for all hospitals and birthing centers irregardless of size to provide screening services. If a mandate is passed, it would likely not take effect until the following year (i.e., 2004).
Objective 1.5. By March 30, 2005, increase to at least 70% the proportion of newborns born at home who receive hearing screening prior to 30 days of life
Methods: The Program Coordinator will work closely with staff from the Newborn Screening Program follow-up program to develop mechanisms to refer families with at-home births to hearing screening services. The educational materials developed for prenatal care providers will be sent to nurse midwives and physicians who assist with at-home births (See Objective 1.3). These prenatal care providers will also receive the expectant parent materials to distribute to their patients (See Objective 1.1). The Program Coordinator, EHDI Research Analyst and others involved in planning the EHDI data system will work on a plan to connect newborn hearing screening data for at-home births to newborn metabolic screening using the same unique identifier. A system will also be developed using the newborn screening unique identifier to determine which newborns received a referral to screening and which newborns actually complete the screening.
Objective 1.6. By July 1, 2003, establish a system for follow-up of newborns who have not received screening by 21 days of life
Methods: The Program Coordinator and Research Analyst will work with CPHL to develop and implement the integrated newborn screening data system. Current Neometrics software will be upgraded to include a screen for newborn hearing screening data capture and then features allowing for identification of newborns who did not receive the hearing screening component will be added. This information will be reported to CCFH, likely through a link to the Child and Family Services module of the FamilyNet client data system. It is anticipated that all birth certificates will also link to FamilyNet, therefore the EHDI Case Finder will be able to identify which of all infants born in Oregon have not been screened and provide follow-up. The EHDI Case Finder will send an informational letter to families encouraging screening if this has not already been completed and if the family did not refuse screening. A letter will also be sent to the newborn's primary care provider, if one has been identified. If the parent/family does not request not to be contacted, the Case Finder will call the family 2 weeks after the letter was sent to reinforce the need for screening and to determine if there are barriers to screening that can be addressed.
Goal 2. Every infant with a positive screening test for hearing loss receives diagnostic audiologic evaluation by 3 months of age
Objective 2.1. By March 30, 2005, decrease proportion of newborns needing diagnostic follow-up by decreasing at least 90% of hospital refer rates to no more than 5%
Methods: The Program Coordinator will contact hospitals to assess current refer rates. The Coordinator will provide individualized technical assistance and problem-solving for hospital screening programs. Audiologists and other hospital screening program representatives will be trained as NHS consultants and will be available to provide on-site assistance and mentoring for NHS technicians in their programs (See also Objective 8.2). Refer rates will be monitored formally on an annual basis with hospital reporting.
Objective 2.2. By September 30, 2001, establish a system to facilitate and track referrals from screening to diagnosis
Methods: Each screening site currently has access to a list of all diagnostic sites in Oregon which are capable of performing diagnostic testing protocols on young infants as recommended by the Advisory Committee. The list is also available on the web page. The Program Coordinator will review hospital protocols to ensure that formal referral of infants to an approved diagnostic facility is included and that information about the referral is documented in the patient chart, and, if allowed by hospital policy or legislation, information is sent to the Health Division. The Program Coordinator and Advisory Committee will develop a plan to overcome the barriers in those situations where a primary care provider authorization is required to obtain diagnostic testing. The Coordinator will contact health insurance plans to request up-to-date lists of diagnostic centers which are covered under each plan. These lists will be distributed to hospital screening programs and updated as needed. The Coordinator will work with the Advisory Committee and representatives of diagnostic facilities to develop a protocol at approved diagnostic sites for recording number of infants who were tested as a result of failure to pass the newborn hearing screening test. Informational materials about diagnostic testing will also be developed to send to an infant's primary care provider along with abnormal screening test results to facilitate referral. A feedback mechanism to allow for diagnostic testing results to be sent back to the initial screening site will be explored.
Objective 2.3. By September 1, 2003, establish a follow-up system for infants referred to diagnostic testing from screening who have not received diagnostic testing prior to 3 months of age
Methods: The Advisory Committee will submit a report to the 2001 legislature recommending that diagnostic centers be required to provide individual level data (e.g., "no significant hearing loss" vs. "refer for early intervention") to the Health Division for follow-up purposes and/or be held harmless for voluntarily providing this information. In either case, parents will be asked for their permission to share information. Reporting protocols will be established at diagnostic facilities to provide data to the Health Division within 14 days of testing for timely follow-up. Diagnostic reports will be matched with screening reports to identify which infants have not received diagnostic testing as of 3 months of age. The EHDI Case Finder will send letters to the family and to the infant's primary care provider encouraging them to seek diagnostic follow-up at an approved facility if it has not already been done. An option for the parent to send back the letter requesting no further contact with the Health Division will be offered. The parent/provider may also send back information as to whether the child did receive testing in another state or at a non-listed facility. If the Health Division does not receive a return letter within 2 weeks and a phone number is made available through the 2003 Birth Certificate revision, the EHDI Case Finder will call the family to provide education and reinforce the importance of diagnostic testing and early intervention preferably before 6 months of age. The EHDI Case Finder will also inquire about barriers to receiving diagnostic testing and offer information about available resources. Unless the family does not wish further contact, the Case Finder will continue to encourage follow-up for infants who have not been diagnosed until at least 12 months of age.
Objective 2.4. By March 30, 2004, identify barriers to infants receiving diagnostic testing and develop a plan to address barriers
Methods: During follow-up contacts with families whose infants had positive screening tests but who had not yet received diagnostic testing, the Follow-up Coordinator will collect and record information from families regarding barriers to obtaining diagnostic testing. The Follow-up Coordinator and Program Coordinator will work with the Advisory Committee and other appropriate stakeholders (e.g. primary care providers, insurance, etc..) to develop a written plan to address barriers.
Goal 3. Every eligible infant with hearing loss receives early intervention services by 6 months of age
Objective 3.1. By September 30, 2001, establish a system to expedite referrals from diagnostic facilities to Early Intervention
Methods: Currently each diagnostic facility has referral information for Early Intervention to give to parents of infants diagnosed with hearing loss. A list of Early Intervention sites is also available on the NHS web page. The Program Coordinator will work with Early Intervention to keep lists up-to-date and to assure that all diagnostic facilities are using them. The Coodinator will work with the Advisory Committee to develop and distribute diagnostic protocols to refer eligible infants with hearing loss to local Early Intervention services within 48 hours and notify the infant's primary care provider of the diagnosis. The diagnostic facility protocol will include collection of data regarding the date of diagnostic testing, date of EI referral and whether notification was sent to the provider to facilitate enrollment in early intervention. Informational materials will be developed for primary care providers of infants diagnosed with hearing loss about the critical importance of initiating early intervention as soon as possible and preferably before 6 months of age.
Objective 3.2. By September 30, 2003, establish a follow-up system for infants referred to EI from diagnostic testing who have not enrolled in Early Intervention (EI) services by 5 months of age
Methods: As previously discussed the Advisory Committee will seek legislation authorizing or requiring reporting of individual level EI data to the Health Division for follow-up. Utilizing individual level diagnostic data and early intervention enrollment data, CDRC and the Family Support Coordinator will develop follow-up protocols through the Care Coordination (CaCoon) program for CSHCN to contact providers and families who have not enrolled in EI services by 5 months of age to encourage prompt follow-up and to coordinate services. The follow-up protocol will extend to include infants with hearing loss up to at least 12 months of age who haven't enrolled in EI.
Goal 4: Every infant identified with hearing loss is connected to a medical home and coordinated services for children with special health care needs as appropriate
Objective 4.1. By June 30, 2003, develop and implement methodologies to identify an infant's medical home and to facilitate connection of infants with hearing loss to medical homes
Methods: The Program Coordinator and Advisory Committee will develop protocols for diagnostic facilities to routinely record whether or not a pediatric primary care provider is identified by the parent and whether the infant or child has been seen by the provider at standard intervals since birth. With parental permission, this information will be sent to the Health Division for tabulation. The Family Support Coordinator at CDRC will develop methods to educate families of infants with hearing loss as to the importance of establishing a primary care provider/medical home. Resource materials such as physician referral directories will be made available to parents on the web page and at diagnostic and early intervention facilities. The Family Support Coordinator will work to link families to the local public health department and the local CaCoon program, which in turn will assist the family in finding and connecting with a primary care provider. The Family Support Coordinator will also develop a method to follow-up with families at 6 months and 12 months of age to determine if the infant is connected to a medical home. The Family Support Coordinator will also develop an anonymous family questionnaire to determine satisfaction with coordination, comprehensiveness, cultural appropriateness, and family-centered focus of the primary care provider's practice. Aggregate information will be available to primary care providers if they wish.
Objective 4.2. By March 30, 2004, educate primary care providers of infants with hearing loss about the concept of "medical home"
Methods: The Family Support Coordinator will coordinate with CDRC's medical home promotion project (i.e., local resource teams) to specifically target medical home materials for primary care providers of infants diagnosed with hearing loss and other special health care needs. Information about referral and consultation resources will also be provided. The Family Support Coordinator will track the number and identity of providers receiving the materials.
Objective 4.3. By March 30, 2004, increase the number of public health nurse home visits to infants with hearing loss and their families for coordination of care (Developmental)
Methods: The Family Support Coordinator will work with the CaCoon program to develop a system to connect infants who have hearing loss to public health nurse home visitation services. This system will be coordinated with the comprehensive home visitation system being developed in Oregon. The Family Support Coordinator will plan and implement training for public health nurses and promotoras in the unique needs of infants with hearing loss and their families (See Objective 8.4). The Family Support Coordinator will provide information to pediatric primary care providers, diagnostic facilities and early intervention specialists as to the role and availability of CaCoon nurses and Hispanic community health workers (promotoras) in some areas with large Hispanic populations. Data regarding nurse home visits and interventions with infants who have hearing loss will be collected via the FamilyNet Child and Family Services data module currently under development.
Goal 5: Every infant identified with hearing loss receives a thorough medical evaluation for the cause and appropriate management of hearing loss
Objective 5.1. By March 30, 2003, educate primary care pediatric providers about the unique medical and psychosocial needs of infants with hearing loss and their families
Methods: The Program Coordinator, CCFH Medical Consultant, Advisory Committee with assistance from hearing loss experts will develop a professional education monograph for pediatric primary care providers and otolaryngologists, both in hard copy and available online. The monograph will include information about best practices in screening, diagnosis, appropriate medical evaluation, medical treatment, early educational intervention and resources for providers and families in Oregon and nationally. It will also include guidelines for monitoring infants at high risk of hearing loss who pass the birth admission screen. Program staff will apply for continuing medical education (CME) credits for the monograph as an incentive for providers to complete the educational activity. A notice will be sent to all pediatric primary care providers and otolaryngologists about the availability of the monograph online or in print. Providers may request a hard copy at no cost to them. A post-test (either mailed or online) will be required to obtain CME credits. The number of monographs requested and the number of post-tests returned will be evaluated.
Objective 5.2. By March 30, 2005, increase the proportion of infants with hearing loss who have a complete medical evaluation including genetic counseling/testing for the underlying cause of hearing loss (Developmental)
Methods: The Program Coordinator and Family Support Coordinator will work with the Health Division's Genetics Program to identify genetics resources for families of infants with hearing loss and make information available on the web page as well as at primary care provider offices, diagnostic sites, early intervention sites and through local public health departments. The Family Support Coordinator will help identify key medical experts in infant hearing loss within Oregon and nationally and develop a resource directory for primary care providers, audiologists, early intervention specialists and public health nurses. To measure this objective, the Family Support Coordinator will develop a family survey including questions about whether their infant received or was offered specific components of medical evaluation including genetic counseling and testing (See objective 6.1).
Goal 6: Every family who has an infant with hearing loss has access to the resources and supports they need for optimal outcomes
Objective 6.1. By March 30, 2003, complete a family resource needs assessment and develop a plan to address needs
Methods: The Family Support Coordinator will create an inventory of family-to-family support groups and other family-to-family resources as well as compiling updated lists of medical resources, including audiologists, otolaryngologists, geneticists who have expertise in caring for infants with congenital hearing loss. The Family Support Coordinator will plan and conduct informal focus groups and/or interviews with families about perceived needs and assets. An bi-annual anonymous family survey will be developed to assess family access and utilization of services and resources (such as nurse home visiting, medical home, medical evaluation) and family satisfaction with services and resources. The Family Support Coordinator will work with Early Intervention to determine whether there are capacity issues affecting ability to adequately serve infants with hearing loss (e.g., current FTE, wait lists, closed caseloads). The Family Support Coordinator will also work with the Healthy Child Care Oregon project coordinator to assess needs for quality child care for infants and young children with hearing loss.
Objective 6.2. By December 31, 2003, establish a standardized system to ensure family choice including EHDI program participation, data collection and sharing, medical and educational intervention and preferred means of communication for their child.
Methods: The state EHDI Program staff and Advisory Committee have already begun work to create and implement standardized policies and procedures at each phase of screening, testing and early intervention to inform parents of available options. Work will continue in this area as well as on development and implementation of release of information forms which give parents the option to permit or not permit identifiable data sharing between screening, diagnosis and intervention sites, the primary care provider and the Health Division. During any follow-up activities, families will be given the option not to participate. Letters sent to families will include an option for the parent/family to return a request for no further contact from the Health Division or CDRC. In addition, the Parents and Providers Subcommittee and Public Education Subcommittee of the Advisory Committee will review family materials to ensure that various options are adequately explored and an emphasis is placed on family choice, including family choice regarding preferred means of communication (e.g. oral, cued speech and American sign language).
Objective 6.3. By December 31, 2003, increase the proportion of families who receive education about hearing loss and information about available resources in a culturally appropriate format (Developmental)
Methods: The Family Support Coordinator will identify family needs in terms of educational materials (See Objective 6.1) and develop (or obtain) these materials as appropriate. Materials will be translated into Spanish (and other languages as needed) and reviewed by individuals from different cultural backgrounds for cultural sensitivity. Materials will be distributed to multiple sites including diagnostic sites and Early Intervention sites. A feedback mechanism will be established to receive input from families as to the usefulness and cultural appropriateness of materials. The Family Support Coordinator will create and maintain a page on the Health Division's website specifically for families with a link to other family resources such as CDRC and Family Voices.
Objective 6.4. By December 31, 2004, sponsor a family conference with an emphasis on family-to-family networking and family-focused education
Methods: The Program Coordinator and Family Support Coordinator will work with consumer/family members of the Advisory Committee to further develop the conference concept. A conference planning committee will be formed , including family members, infant hearing experts, early intervention specialists, and public health nurses. Speakers will be invited to provide talks on topics of interest to families. Opportunities will be available for family-to-family networking and support. There will also be opportunities for EHDI program staff and others involved in the EHDI system to hear family perspectives. The conference will be conducted in the summer in a central location to allow for maximum family participation. Child care will be provided and assistance with travel costs will also be available.
Goal 7: Integrated and accurate data is available and utilized to ensure that infants and families are receiving the services that they need for optimal outcomes
Objective 7.1. By January 31 of each year, collect and analyze required hospital data
Methods: The Program Coordinator and Research Analyst will initially develop a basic data base to enter annual hospital data. The annual hospital screening data will be compared with records of total number of newborns born in each hospital per year and the total number of newborns born in Oregon per year to determine the percent of newborns screened. An annual report will be developed and distributed to hospitals and made available to the public on the website. PRAMS data will also be used to determine the percent of newborns screened.
Objective 7.2. By July 31, 2001, pass legislation requiring (or) authorizing the reporting of individual level screening data from hospitals, diagnostic facilities and Early Intervention facilities
Methods: The Advisory Committee with the assistance of Health Division staff are currently developing a legislative report to be presented to the 71st Legislature in 2001. The report contains recommendations for legislation requiring or authorizing the sharing of individual level data with the Health Division for follow-up purposes and evaluation of the effectiveness of the EHDI program. The Advisory Committee will find a legislator to sponsor a bill containing the Committee recommendations and may provide testimony and advocate for the legislation as needed.
Objective 7.3. By March 30, 2003, implement a centralized data system that:
Methods: The planning and development of an integrated data system is already underway. A new column to collect newborn hearing screening results is being added to newborn hearing screening blood spot cards. A place will be available on the cards to indicate whether a parent refused screening. These cards will be sent to the CPHL for data entry. First, however, the Neometrics data system at the CPHL must be upgraded to accept newborn hearing screening data. Software will be purchased from Neometrics to include a screen for capture of newborn hearing screening data. Following this initial upgrade, features will be added allowing for transfer of files to CCFH for analysis and follow-up. These upgrades will take place in year 1 of the grant. A Medical Lab Technician 1 will be hired at the CPHL for data entry and follow-up of missing hospital newborn hearing screening data. The Program Coordinator and staff at the CPHL will eventually seek funding and support for remote data entry from hospitals for both newborn hearing screening and metabolic screening.
A next step will be developing methods to link individual diagnostic data and early intervention enrollment data with the screening data. Plans are currently in progress to include all of these data components as well as birth certificate information (linked through a unique newborn screening identifier) in the Child and Family Services module of the FamilyNet data system. A Research Analyst and Information Systems Specialists will be hired as part of the CDC EHDI grant to assist current Health Division staff in the development of the FamilyNet system. Groups are currently working on and will continue to work on policies and procedures for protection of confidentiality and data security.
Goal 8: Staff involved in all phases of the state EHDI system have the knowledge and skills necessary for program success
Objective 8.1. On a continuing basis, increase the knowledge and skills of state EHDI program staff related to detection of and intervention for newborn/infant hearing loss
Methods: EHDI staff including the Program Coordinator, Research Analyst, and CDRC Family Support Coordinator will take part in local, state and national conferences and trainings pertaining to detection of and intervention for hearing loss in newborns and infants. Literature from the EHDI field and information brought back from meetings will be shared among staff members. EHDI staff will also continue to consult with colleagues in other states to gain new perspectives on EHDI issues and to share Oregon's experiences. The staff will work closely with the Advisory Committee at monthly general meetings and work group meetings to glean perspectives of experts on the Committee.
Objective 8.2. By March 30, 2003, train audiologists and other hearing experts to serve as consultants/mentors for newborn hearing screening (NHS) programs and NHS technicians
Methods: The Coordinator will work with the Oregon Academy of Audiologists, the Advisory Committee, infant hearing loss experts, hospitals and equipment vendors to develop a training for audiologists or other representatives of hospital screening programs on screening techniques, equipment and continuous quality improvement as well as other phases of the EHDI program including diagnosis and intervention. These individuals then will serve to provide on-site technical assistance, consultation and ongoing training for newborn hearing screening technicians at their hospitals. The curriculum will be presented at two regional trainings in year 1 and one training in year 2. Updates and additional trainings will be scheduled as needed and as resources allow.
Objective 8.3. By September 30, 2003, facilitate updates for audiologists and physicians regarding diagnostic evaluation of infants with suspected hearing loss
Methods: The Program Coordinator will work closely with the Advisory Committee and Oregon Academy of Audiologists to identify changes in standards of care or diagnostic protocols. The Program Coordinator will coordinate with OAA to send out semi-annual program updates (via an electronic newsletter) to Oregon's audiologists and physicians who are involved in diagnostic testing, beginning in Fall 2003.
Objective 8.4. By March 30, 2003, train public health nurses about health and education issues affecting infants with hearing loss and their families
Methods: The Family Support Coordinator (a public health nurse) will be hired in year 2 to assist with the development and implementation of public health nurse training as well as assisting in family resource development. The Family Support Coordinator will work closely with Early Intervention to develop curriculum and conduct joint training sessions for public health nurses and early intervention specialists. The Family Support Coordinator will coordinate 4 regional workshops for nurses (in conjunction with early intervention specialists) during years 2 and 3 of the grant.
Objective 8.5. By March 30, 2003, educate early intervention specialists about health issues affecting infants with hearing loss and their families
Method: The Family Support Coordinator will work with the Department of Education Early Intervention program to identify early intervention specialist needs for continuing education in the field of infant hearing loss. The Family Support Coordinator will coordinate with Early Intervention to conduct 4 joint regional workshops for EI and public health staff.
Goal 9: A broad-based Newborn Hearing Screening Advisory Committee is maintained on a permanent basis
Objective 9.1. On an ongoing basis, the Advisory Committee will meet at least quarterly to provide guidance to the EHDI program
Method: The EHDI Program Coordinator will facilitate Advisory Committee meetings on a regular basis. The Clerical staff will be responsible for minutes. It is anticipated that meetings will occur approximately every other month during the period of this grant, with additional meetings for subcommittees and work groups.
Objective 9.2. On an ongoing basis, families with infants who have hearing loss and consumers with hearing loss are represented on the Advisory Committee
Method: The EHDI Program will provide live captioning and signing services for Advisory Committee members who are deaf or hard of hearing. The Program will also provide assistance with travel, parking and meeting incidentals so families and members who live out of the Portland metro area can participate.
Goal 10: Oregon's EHDI Program is sustainable after grant funds expire
Objective 10.1. By March 30, 2005, establish adequate hospital reimbursement for newborn hearing screening
Method: The Advisory Committee's Reimbursement Subcommittee will reconvene to discuss progress in insurance coverage of newborn hearing screening services and will develop and implement a prioritized plan to work with hospitals and insurance companies on reimbursement issues.
Objective 10.2. By March 30, 2005, secure long-term funding for the state EHDI program
Methods: The Program staff and Advisory Committee will continue to consider potential funding options, including private foundation support, state general funds and MCH Title V resources. Reports to the 2001 and 2003 Legislatures will include recommendations for state support of personnel, data system and ongoing activities.
4.2.11. Evaluation Plan
The Oregon UNHSI grant project will be evaluated on the level of progress toward the project goals and objectives within the proposed time frames. Both process measures and quantitative/qualitative outcome measures will be included. The proposed measures are identified in connection with the project goals and objectives in the Monitoring and Evaluation Methodology column of "Attachment F" Project Activities Time Allocation Table, which follows the Budget Justification as per 3B of the application guidelines. Selected measures for evaluation are listed with data sources and methodology in Figure 1 (See Appendix 11). following this narrative.
The impact of the UNHSI project will be determined primarily from the 4 key performance measurements which correlate with the first 4 goals of the project, ensuring that newborns are screened, diagnosed in a timely manner, connected to early intervention services during the critical first 6 months of life and connected to a medical home for coordination of care and appropriate medical management. Though out of the scope of the current project, it is anticipated that this project will lay the foundation to eventually assess the larger impact of these efforts on the health, well-being and academic success of children.