WASHINGTON PROJECT ABSTRACT

Project Title: Early Hearing Loss Detection, Diagnosis, and Intervention (EHDDI) Implementation in Washington State
Project Number: CFDA #93.251
Project Director: Debra Lochner Doyle, MS, CGC Phone: 253-395-6742
Organization Name: Washington State Department of Health
Address: 20435 72nd Avenue South, Suite 200
Kent, WA 98032
Contact Person: Debra Lochner Doyle Phone: 253-395-6742
Fax: 253-395-6737
E-mail Address: Debra.LochnerDoyle@DOH.WA.GOV
Project Period: 4 Years From: 9/1/01 to 8/31/05

Organizational Setting

The project " Early Hearing Loss Detection, Diagnosis, and Intervention (EHDDI) Implementation in Washington State" will be administered by the Washington State Department of Health, Office of Maternal & Child Health, Genetic Services Section with Debra Lochner Doyle, MS, CGC as the Project Director. Collaboration will occur with Children's Hospital and Medical Center (CHRMC) in Seattle, Washington, where a team under the direction of Susan J. Norton, PhD, CCC-A is currently carrying out activities related to EHDDI implementation.

Purpose

The purpose of this project is to develop a sustainable early hearing loss detection, diagnosis, and intervention program in Washington, where all newborns are screened for hearing loss prior to hospital discharge or before 1 month of age, infants that are referred from screening receive diagnostic assessment by 3 months of age, and infants that are diagnosed with hearing loss receive appropriate intervention by 6 months of age. Linkage to a primary care provider that provides care consistent with the elements of a medical home as well as family-to-family support will be promoted, and efforts to assure adequate public and private resources for services will be undertaken.

Challenges

Currently, only 13 of 72 birth hospitals (18%) are operating universal newborn hearing screening programs in Washington, with an additional 6 hospitals (8%) operating high risk screening programs. The availability and appropriateness of audiological assessment and intervention services have not been sufficiently addressed at the statewide level. Furthermore, Washington State encompasses 66,662 miles of rural and urban areas with the Cascade Mountain range dividing the state from north to south, and services vary considerably throughout the state. There have been few efforts to assure family-to-family support, or to promote the medical home concept for infants screened and identified with hearing loss.

Goals and Objectives

There are six broad goals for this proposal: (1) to increase to 95% the proportion of newborns who receive physiologic screening for hearing loss prior to hospital discharge, or before 1 month of age; (2) to increase the proportion of newborns who are referred from screening that receive appropriate audiological assessment by three months of age; (3) to increase the number of newborns who are enrolled in an appropriate early intervention program by six months of age; (4) to increase awareness about early hearing loss detection, diagnosis, and intervention among the public and health care professionals; (5) to promote the provision of services within the context of a medical home; (6) to promote linkage to culturally competent care, family-to-family support; and (7) to improve public and private insurance coverage of detection, diagnosis, and intervention services.

Methodology

The methodology of the project includes several main components: (1) develop an EHDDI Implementation Workgroup to act in an advisory capacity to the project; (2) implement activities to increase the knowledge and awareness of the general public and health care professionals about EHDDI ; (3) provide technical assistance to hospitals implementing new hearing screening programs or evaluating existing programs; (4) conduct trainings to audiologists and birth-to-three providers to increase their skills in diagnosing and serving very young infants with hearing loss; (5) promote the medical home concept through a partnership with the Medical Home Leadership Network and the Washington Chapter of the American Academy of Pediatrics; (6) utilize existing family support resources to provide family-to-family support within the context of EHDDI; (7) educate public and private payers about EHDDI; (8) continue to develop the EHDDI Tracking & Surveillance System to identify and track infants that need follow-up services throughout the EHDDI process.

Evaluation

The evaluation component of the project is composed of a process evaluation and an outcome evaluation. The process evaluation will consist of monitoring the extent to which activities are being done on time, their degree of completeness, and the quality of work performed. The outcome evaluation will consist of determining whether the activities undertaken have affected outcomes with regards to the six goals stated in this proposal. Quantitative outcome measures include: (1) the proportion of infants who receive hearing screening before three months; (2) the number of audiologists who can perform a recommended audiological assessment protocol; (3) the proportion of infants referred from screening receiving diagnosis by 3 months of age; (4) the number of birth-to-three providers trained to provide services to children with hearing loss; (5) the number of deaf and hard of hearing children enrolled in appropriate early intervention by 6 months of age. Qualitative outcome measures include: (1) opinions of parents who have had a child undergo newborn hearing screening regarding the cultural appropriatness of services, availability of family-to-family support, and whether their child was cared for within a "medical home;" and (2) changes in public and private coverage of EHDDI services and equipment for children who are deaf or hard of hearing.

Test of Annotation

The purpose of this project is to implement a sustainable early hearing loss detection, diagnosis, and intervention program throughout the state. Goals include increasing the proportion of infants and children screened for hearing loss prior to hospital discharge or prior to 1 month of age; increasing the proportion of infants and children referred from screening who receive audiological diagnosis within 3 months of age; and increasing the number of infants and children enrolled in early intervention prior to 6 months of age. Also included as goals are to ensure infants are cared for within a medical home, to ensure that culturally competent care and family-to-family support is available, and to improve public and private coverage of services.

Key Words

Universal Newborn Hearing Screening; Early Intervention

Hearing impairment is one of the more common abnormalities present at birth. Nationally, 1 to 3 out of every 1000 children will be born with a hearing loss. 1,2,3,4 For Washington, that translates into approximately 80-239 children born each year with significant hearing loss. Without newborn hearing screening, several studies have reported that the median age of identification of hearing loss is between 12-25 months.5,6,7 Children identified late with hearing loss experience developmental delays that place them at risk for life-long disadvantage. According to the Washington State Department of Social and Health Services, 65% of the deaf population in Washington lives at or below the federal poverty level. In addition, the unemployment rate for deaf high school graduates is twice that of their hearing peers.

It has been clearly demonstrated that when hearing loss is detected early and infants receive appropriate and timely intervention, they can develop age-appropriate language and developmental skills, similar to those children with full hearing capabilities. The effectiveness of early intervention, coupled with recent technological advances that have made screening for congenital hearing loss effective, reliable, and affordable, has resulted in numerous organizations recommending early hearing screening followed by appropriate diagnostic and intervention services. Specifically, Healthy People 2010 includes an objective to "increase the proportion of newborns who are screened for hearing loss by age 1 month, have audiologic evaluation by age 3 months, and are enrolled in appropriate intervention services by age 6 months." In Washington, this process of screening newborns for hearing loss, providing diagnostic confirmation for those newborns with suspected hearing loss, and initiating medical, audiological, and educational intervention for those newborns with confirmed hearing loss is collectively referred to as early hearing-loss detection, diagnosis, and intervention (EHDDI).

Although progress has been made over the past few years, there is still substantial work to be done in implementing EHDDI statewide in Washington. While the number of infants screened in Washington is steadily increasing, only 13 of 72 birth hospitals are operating universal newborn hearing screening programs, with an additional 6 hospitals operating screening programs based upon high risk criteria, altogether screening 23% of infants prior to hospital discharge in 2000. The availability and appropriateness of audiological assessment and intervention services varies considerably throughout the state. There have been few statewide efforts to promote culturally competent, family-to-family support for families within the context of EHDDI, or to assure that infants screened have a primary care provider that provides care consistent with the elements of a medical home.

Washington State also faces other unique challenges in implementing EHDDI. The state encompasses 66,662 miles of rural and urban areas with the Cascade Mountain range dividing the state from north to south. The majority (60%) of the state's population lives west of the mountains, where the three most populated counties are located. Access to health care systems varies considerably for urban and rural populations. Some health care indicators also show significant disparities based on race, with people of color having much higher rates of health problems. Access issues, cultural appropriateness of services being provided, and income are major factors in these disparities.

The purpose of this project is to develop a sustainable early hearing loss detection, diagnosis, and intervention system, whereby at least 95% of infants born in Washington receive screening prior to hospital discharge or by one month of age, all infants referred from screening receive audiological assessment prior to three months of age, and all infants with hearing loss are enrolled in intervention prior to six months of age. This system should include coordination to the infant's medical home, and culturally competent, family-to-family support. Adequate public and private resources for all services should also be available.

Anticipated benefits of this project include a greater understanding of the importance of EHDDI among the public, parents, hospital administrators, and health care providers; an increased number of hospitals with UNHS programs; an increased number of appropriately trained audiologists and early interventionists serving children birth-to-three with hearing loss across the state; improved coordination of services, including linkage to a medical home and culturally competent, family-to-family support; and improved public and private coverage of EHDDI services. All of these benefits should ultimately result in earlier age of identification, diagnosis, and enrollment in early intervention, thus optimizing outcomes for children with hearing loss.

Organizational Experience and Capacity

This project will be administered by The Washington State Department of Health (DOH), Division of Community and Family Health (CFH), Office of Maternal and Child Health (MCH), Genetic Services Section (GSS), in partnership with Children's Hospital & Regional Medical Center (CHRMC). Both entities have collaborated on various aspects of EHDDI over the past few years, and offer important experience and skills to the implementation of this project.

1. Washington State Department of Health (DOH), Division of Community & Family Health (CFH), Office of Maternal & Child Health (MCH), Genetic Services Section (GSS)

The Office of Maternal & Child Health (MCH) is the Title V Agency in Washington State. MCH works to promote and develop an environment that supports the optimal health of all women of child bearing age, infants, children, adolescents, and their families. Programs within MCH include: Children with Special Health Care Needs (CSHCN), Child & Adolescent Health/Child Profile, Maternal & Infant Health, Immunization, MCH Assessment, and the Genetic Services Section (GSS). (Refer to Appendix A for DOH organizational charts)

1.A Experience with Early Hearing Loss Detection, Diagnosis, and Intervention

EHDDI efforts currently reside in the Genetic Services Section (GSS). The GSS has worked on EHDDI since 1997, when a needs assessment performed by Children's Hospital & Regional Medical Center indicated that few hospitals had implemented universal newborn hearing screening programs. After the completion of the needs assessment, the Washington State Legislature passed a resolution stating the importance of early hearing screening for all newborns in Washington, and DOH was asked to convene a task force to explore EHDDI further. The GSS staffed the EHDDI Task Force, which met over the period of one year and developed a report that recommended that all children be screened for hearing loss, be diagnosed, and receive intervention no later than 6 months of age. The task force identified concerns in the areas of funding and reimbursement for screening and diagnostic services, and in the availability of intervention services in Washington for very young children with hearing loss. It was recommended that more work be done to assure the availability of intervention services, that several pilot projects be developed to refine practices, and that collaborative efforts be formed to promote EHDDI. In the legislative session that followed the release of this report, DOH was issued a $100,000 budget provision to promote EHDDI in Washington, and the GSS has undertaken efforts in this area, described below.

A listserve was established in 1999 to facilitate communication about EHDDI among health care professionals and other interested stakeholders. The GSS collaborated with the Washington State Hospital Association (WSHA) to conduct a mailing of the MCHB Universal Newborn Hearing Screening Implementation Guide to all hospitals in Washington to further promote EHDDI. In addition, a workgroup of eleven audiologists was convened to develop "best practices" in the audiological evaluation of infants.

The GSS also coordinated a "Request for Partners" opportunity for five hospitals to obtain transient evoked otoacoustic emissions (TEOAE) equipment and technical assistance from audiologists with expertise in newborn hearing screening. Thirteen applications were received and five hospitals were selected to receive the equipment and implement universal newborn hearing screening programs within one year, based upon their proposed management and staffing for the program, and demonstrated linkage to diagnostic and early intervention services. All hospitals have received technical assistance from audiologists with expertise in this area, and are ready to implement programs this summer.

Additionally, DOH was selected to enter a Cooperative Agreement with the CDC to develop an EHDDI Tracking & Surveillance System. This system is being developed through a collaborative effort between the GSS and the Office of Newborn Screening (NBS), located in the Division of Epidemiology, Statistics, and Public Health Laboratories. The proposed tracking system will utilize the blood spot collection card for the reporting of hearing screening results, and tracking will occur through a system that will be integrated with the current metabolic tracking system, Neometrix. Web-based reporting of audiologic evaluation results and referral to intervention is also proposed. The five hospitals that were selected to obtain hearing screening equipment from DOH will act as sites for piloting the reporting system.

GSS staff have also educated and informed a variety of groups about EHDDI, including: the Washington State Board of Speech and Hearing, the Washington Chapter of the American Academy of Audiology, Public Health Nursing Directors, and the Children with Special Health Care Needs Communication Network.

1.B Other Relevent Experience

In addition to experience in EHDDI, the GSS has a long track record of knowledge and experience in the planning, implementation, and evaluation of large-scale projects. For example, other federal grants and cooperative agreements that have been under the auspices of the GSS include:

• HRSA Special Projects of Regional & National Significance (SPRANS) entitled Genetics Education Project for Primary Care Providers, "Genetics & Your Practice"
• HRSA Special Projects of Regional & National Significance (SPRANS) entitled The Partner's Forum: A Washington State Model for Ensuring Access to Quality Genetic Services for Persons in Managed Care
• CDC State Capacity Project for Assessing & Preventing Secondary Conditions Associated with Disability and Promoting the Health of Persons with Disability

2. Children's Hospital and Regional Medical Center (CHRMC), Department of Surgery, Division of Pediatric Audiology

Children's Hospital & Regional Medical Center (CHRMC) has played an important role in promoting EHDDI in Washington over the past three years. CHRMC is an independent, non-profit regional pediatric center that provides specialized secondary and tertiary services and in-patient care to children from birth to age twenty-one. CHRMC occupies a central role in pediatric patient care and research in the WAMI Region (Washington, Alaska, Montana, Idaho).

Within CHRMC, the Children's Communication Disorders Center (CCDC) was formed in 1999 to serve children with communication disorders and their families, conduct clinical research, and provide outreach to care providers and families throughout the WAMI region. The Division of Pediatric Audiology, located with the Department of Surgery, is a major component of the CCDC. (Refer to Appendix B for CHRMC Organizational Chart) Services within the division include Clinical Audiology, which includes diagnostic services and the provision of assistive technology (hearing aids and FM systems), the Pediatric Cochlear Implant Program, the Aural Rehabilitation Program, Family Conversations, an early intervention program for children 0-3 with hearing loss and their families, and the Discoveries Program, a program serving families with newborns and infants with suspected and confirmed hearing loss. There are 20 audiologists, early childhood specialists, and support staff within the Division of Pediatric Audiology.

Susan J. Norton, PhD, CCC-A is the Director of the Division of Pediatric Audiology and Co-Director of the CCDC. Dr. Norton has considerable expertise in neonatal hearing screening and the coordination of multi-site projects. She was the Primary Investigator for a National Institutes of Health multi-center grant entitled "Identification of Neonatal Hearing Impairment." In addition, Dr. Norton has been the Director of the Family Conversations Program since 1993. She is familiar with the state and county agencies responsible for providing early intervention services and knowledgeable of the difficulties encountered in serving children in remote areas.

In addition to providing a comprehensive array of diagnostic and early intervention services, CHRMC has been heavily involved in the promotion of EHDDI. Through a partnership with the Northwest Lions Foundation for Sight and Hearing (NLF), CHRMC has obtained funding and support to carry out activities aimed at promoting EHDDI statewide. Staff have developed materials to assist hospitals in setting up a universal newborn hearing screening program including: a needs assessment tool, a matrix comparing different types of hearing screening equipment, screening protocol examples, and educational materials for hospitals to share with parents and physicians. In February 2001, CHRMC hosted a large 2 day workshop entitled "Universal Newborn Hearing Screening: How to Implement a Successful Hospital Program," featuring Karl White, PhD of the National Center for Hearing Assessment & Management, attended by representatives from over 20 hospitals. In addition, CHRMC staff have provided on-site technical assistance to ten hospitals and telephone consultations to an additional seven hospitals regarding the planning, implementation, and/or evaluation of their universal newborn hearing screening programs across the state. A toll-free technical assistance hotline and a dedicated email address have also been established for use by professionals involved in newborn hearing screening, with a 24 hour turn-around time for answers to questions by CHRMC staff.

CHRMC has also undertaken efforts to improve audiogical, early intervention, and family support resources across the state. Staff surveyed audiologists across the state to determine state capacity for serving infants referred from hearing screening programs as well as training needs. As a result of these findings, staff have conducted two workshops for audiologists, focusing on (1) amplification for infants and young children and (2) diagnostic audiological evaluation of infants. Staff have also presented at an annual state conference on early childhood development sponsored by Washington Sensory Disability Services (WSDS) regarding intervention options for children with hearing loss. Furthermore, a Parent Advisory Board has been developed to (1) provide consultation about materials developed from a family perspective and (2) foster support for other families.

CHRMC has been instrumental in raising general awareness about EHDDI, as well. Staff coordinated a mailing to all members of the Washington Chapter of the American Academy of Pediatrics (WCAAP) on the importance of newborn hearing screening, and have developed a portable informational booth that can be taken to fairs and conferences to educate the general public about EHDDI. They have also presented at grand rounds and numerous professional meetings.

DOH has formed a collaborative relationship with CHRMC in promoting EHDDI statewide. Staff in the GSS and CHRMC share information on a periodic basis, both formally (i.e. meetings) and informally (phone calls, emails). DOH has contracted with CHRMC to provide technical assistance to three of its five pilot hospitals. In addition, DOH has provided funding to CHRMC to develop and disseminate educational materials. CHRMC has adapted the RFP application developed by DOH for use in selecting additional hospitals to receive equipment and technical assistance through the NLF. In addition, DOH presented information on the EHDDI Tracking & Surveillance System at the UNHS workshop sponsored by CHRMC in February.

Refer to Appendix C for examples of materials developed by CHRMC.

Administration and Organization

Administration of this grant will reside in the Genetic Services Section of the Washington State Department of Health. A contract will be initiated with the CHRMC Division of Pediatric Audiology, under the direction of Dr. Susan Norton to carry out specific activities. Bi-monthly meetings between DOH and CHRMC staff will occur to ensure that objectives are met in a timely, coordinated fashion.

In addition, an EHDDI Implementation Workgroup will be developed under this project, and will act as an advisory body to DOH and CHRMC. Membership of this group is described in the "Collaboration and Coordination" section.

Available Resources

1. DOH Resources

1.A Division of Community and Family Health, Office of Maternal & Child Health, Genetic Services Section (GSS)

The staff of the Genetic Services Section (GSS) include a Program Manager, Debra Lochner Doyle, MS, CGC; a Health Services Consultant 3, Sarah Forquer, MPH; a Disabilities Prevention Specialist, Angie Gibson, MS; an EHDDI Tracking & Surveillance Coordinator, Debbie Finel; and an Administrative Secretary, Stacy Eaves. For the purposes of this grant, the services of the Program Manager, the Health Services Consultant 3, and the EHDDI Tracking & Surveillance System Coordinator are anticipated.

The GSS office is located in Kent, WA, in close proximity to the Seattle-Tacoma airport, which easily facilitates meetings with constituents and stakeholders from around the state. Videoconferencing equipment is available, and all staff have networked personal computers, and telephones that are equipped for teleconferencing. Three photocopying machines, two laser printers, and a fax machine are also available.

1.B Division of Epidemiology, Statistics, and Public Health Laboratories (ESPHL), Office of Newborn Screening (NBS),

The Office of Newborn Screening (NBS) is collaborating with the GSS in the development of the EHDDI Tracking & Surveillance System. For the past 23 years, over 99% of infants born in Washington have been screened for metabolic disorders by the newborn screening program and all affected infants have been diagnosed and treated in a timely fashion. The EHDDI Tracking & Surveillance System is being modeled after the successful metabolic tracking system, and will utilize the blood spot collection card for hospital reporting of screening results. The lessons learned by the metabolic newborn screening program will be vital in ultimately reaching the same level of success for the tracking of infants through hearing screening, diagnosis, and intervention.

The NBS Prgoram is located in Shoreline, WA, approximately twenty miles from the GSS Office. However, staff meet bi-monthly to work on project activities. NBS staff that are involved in the development of the Tracking & Surveillance System include: Santosh Shanuak, Acting Director of the Office of Newborn Screening, Sheila Neier, NBS Follow-Up Coordinator, Jana Pruski and Richard Masse, NBS Follow-Up Staff.

1.C Children with Special Health Care Needs Program (CSHCN), Office of Maternal & Child Health (MCH), Division of Community & Family Health (CFH)

The Children with Special Health Care Needs (CSHCN) Program promotes an integrated system of services for infants and children up to age 18 years who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions and who require health and related services of a type or amount beyond the usual care for children.

The CSHCN Program works with other service delivery systems to ensure that children with special health care needs and their families have access to health and other needed services at the community level. Work is accomplished through partnerships with other state agencies, contractual arrangements with local health jurisdictions, local private and non-profit agencies, the University of Washington, Children's Hospital and Regional Medical Center, other tertiary care centers, and in collaboration with families and other MCH offices.

Specifically, MCH contracts with local health jurisdictions (LHJs) to provide a CSHCN Coordinator to help children with special needs and their families access needed information and services in each county. CSHCN Coordinators work closely with the early intervention systems, and CSHCN coordinators also interact with health plans to ensure that children with special needs in Medicaid managed care have an established treatment plan and coordination of services. Private insurance and Medicaid remain the primary sources of funding for most services, with the CSHCN Program being the payer of last resort for medically necessary services not covered by Medicaid or any other funding source.

The CSHCN Program Office is located in Olympia, WA, approximately sixty miles from the GSS office in Kent, WA. However, GSS staff work in Olympia once a week to facilitate collaboration with the CSHCN and other MCH programs.

2. CHRMC Resources

Susan Norton, PhD, CCC-A currently leads a project team that devotes part of their time to promoting EHDDI in Washington, as described. This team is currently comprised of an Administrative Coordinator, Esther Hammerschlag; a Pediatric Audiologist, Jennifer Kolb, M.Ed., CCC-A; a Parent Infant Communication Development Specialist and Coordinator of the Discoveries Program, Marie-Celeste Condon, M.S., CED, and a Communication Specialist and Program Assistant for the Family Conversations Program, Linda Dobner. In 1999, the Northwest Lions Foundation for Sight and Hearing (NLF) committed $150,000 to CHRMC for the purpose of enhancing universal newborn hearing screening, linked to appropriate diagnostic follow-up and early intervention services over a three year period. These funds have been used to perform activities described in the "Organizational Experience and Capacity" Section.

CHRMC is located in the greater Seattle metropolitan area and has a conference center that can be used for large meetings and workshops. In addition, hospital copying services are available for reproduction and binding services. All staff within the division have telephones and networked personal computers, including email and internet access.

3. Northwest Lions Foundation for Sight & Hearing (NLF) Resources

As a measure of its strong commitment to make newborn hearing screening a routine practice in the Pacific Northwest region, NLF has established the Lions Early Assessment Program (LEAP), which will provide a network of Lion-based community support in addition to significant funding aid. The three main components of LEAP are the provision of the infrastructure and technical training necessary for newborn hearing screening, an extensive public education campaign to alert parents and the public of the importance of newborn hearing screening, and assistance in connecting the parents of newborns identified with hearing loss to the intervention services necessary for their child's development.

In addition to providing funding to CHRMC to address the above components, as described in the "Organizational Experience and Capacity" section, NLF has committed to provide direct financial assistance to hospitals for the purchase of hearing screening equipment, tracking software, supplies and other items needed to start a UNHS program. NLF has agreed to donate funds (in increments of ~$10,000) to hospitals with demonstrated need, funding a total of 15 hospitals by 2003. Hospitals interested in this opportunity are required to complete an application describing preliminary plans for staffing of the screening program, proposed screening protocols, and knowledge about community audiological and intervention resources. CHRMC staff have played a large role in coordinating the application process. Some communities have also worked directly with their local Lions Clubs to raise additional funds for the purchase of newborn hearing screening equipment and supplies.

4. Other State Resources

4.A Department of Social & Health Services (DSHS), Division of Developmental Disabilities (DDD), Infant Toddler Early Intervention Program (ITEIP)

The Infant Toddler Early Intervention Program (ITEIP) is responsible for coordinating and fostering further development of a comprehensive statewide system of accessible local early intervention services for infants and toddlers age birth to three with disabilities and their families as defined in the Individuals with Disabilities Education Act (IDEA), Part C. The State Interagency Coordinating Council (SICC) assists DSHS (as the lead agency) as well as the Department of Health, the Department of Services for the Blind, the Office of Community, Trade, and Economic Development, and the Office of the Superintendent of Public Instruction (OSPI) in carrying out the mission of ITEIP. However, implementation occurs at the local county level through County Interagency Coordinating Councils (CICC) and local lead agencies which assure the provision of services for children referred to the program. Family Resource Coordinators (FRCs) exist throughout the state to provide resources, coordinate services, and to develop Individual Family Service Plans (IFSPs) for children birth to three referred to the program. All children with hearing loss are eligible for early intervention services through ITEIP.

Karen Walker of the ITEIP Program is the primary point of contact about early hearing loss detection, diagnosis, and intervention, and currently works with DOH and other partners on an Interagency Intervention Workgroup to strategize ways that the intervention needs of infants with hearing loss can better be met.

4.B Office of the Superintendent of Public Instruction (OSPI)

The Office of the Superintendent of Public Instruction (OSPI) has the overall responsibility and general supervisory authority for administering federal and state educational programs. School districts in Washington State are required to provide special education services to eligible children 3-21 years of age. Over 45% of the school districts also provide special education services to infants and toddlers with disabilities in Washington State.

Anne Shureen, an Early Childhood Special Education Coordinator, is the primary point of contact about early hearing loss detection, diagnosis, and intervention, and is also a part of the Interagency Intervention Workgroup that has been formed to strategize ways that the intervention needs of children birth-to-three with hearing loss can better be met in Washington.

4.C Washington Sensory Disabilities Services (WSDS)

Washington Sensory Disability Services (WSDS) is a state needs project that receives funding from both the Infant Toddler Early Intervention Program (ITIEP) and the Office of the Superintendent of Public Instruction (OSPI). Each year, WSDS provides some type of in-service training in the area of early intervention for infants/toddlers with hearing loss, targeting two main groups: (1) birth-to-three service providers who work in developmental disabilities programs, private programs, or school district infant/toddler programs; and (2) teachers of the deaf and other professionals in the field of hearing loss who work with school-aged children. As a resource, WSDS brings knowledge of and access to early childhood training networks and systems in the state, via in-person training venues (e.g. Early Childhood Summer Institute, Family Resources Coordinator trainings) and via the statewide K-20 videoconferencing network. WSDS also has staff with many years of experience in providing services to families with infants/toddlers with hearing loss and training professionals.

Nancy Hatfield, PhD, Director of Training and Early Childhood at WSDS, currently works with DOH and other partners on an Interagency Intervention Workgroup to strategize ways that the intervention needs of infants with hearing loss can better be met. Ms. Hatfield holds a B.A. in Speech Pathology/Audiology, and a M.S. and Ph.D. in Education and Human Development. She has worked for many years with families of birth-to-three years olds with hearing loss, and since 1992 has worked to enhance statewide capacity to meet the developmental needs of young children with sensory disabilities.

4.D Washington School for the Deaf (WSD)

The Washington School for the Deaf has historically educated children in pre-school through twelfth grade at its residential campus in Vancouver, WA. However, in an effort to better meet the needs of the state, the school has recently expanded its on campus services to include a statewide outreach component, and is currently enhancing services for the birth-to-three population. Len Aron, Superintendent of the School for the Deaf, has expressed an interest in strategizing with DOH and others regarding ways in which the school can better meet the needs of the state, particularly as EHDDI is implemented statewide.

4.E Washington State Hospital Association

The Washington State Hospital Association (WSHA) provides advocacy for, and service to, its member hospitals. It plays a major leadership role in issues that affect delivery, quality, accessibility, affordability and continuity of health care. WSHA has assisted both CHRMC with DOH in marketing opportunities for hospitals to obtain hearing screening equipment in their weekly bulletin. WSHA will continue to play an important role representing hospitals, facilitating communication, and keeping hospitals informed about progress.

4.F Medical Home Leadership Network (MHLN)

The Medical Home Leadership Network (MHLN) is a regionally-based statewide network of 15 volunteer Medical Home Teams that began in 1994, and is located within the University of Washington Center on Human Development and Disability (CHDD). MHLN was recently awarded a three-year HRSA grant with 3 main goals: (1) to improve the availability and accessibility of medical homes for children with special health care needs and their families in Washington State, (2) to advance the awareness and knowledge of the medical home concept in Washington State, and (3) to develop a model for measuring outcomes for children and their families with a medical home.

Kate Orville, Co-Director of the Medical Home Leadership Network, has agreed to work with DOH and CHRMC staff to strategize ways in which the medical home teams can be utilized to promote linkage with a child's medical home throughout EHDDI.

4.G Washington Chapter of the American Academy of Pediatrics (WCAAP)

The Washington Chapter of the American Academy of Pediatrics (WCAAP) advocates for the health and well being of children and their families while supporting pediatricians in their development and practice. DOH and CHRMC staff recently enhanced their relationship with WCAAP by inviting a representative to the recent technical assistance workshop in Salt Lake City in May 2001. Dr. Roy Simms, a pediatrician in Yakima, WA and President-Elect of WCAAP, accompanied the Washington State team to this meeting. As a result of the collaboration fostered through this workshop, WCAAP has agreed to play an active role in educating its members about EHDDI.

4.H Family Support Resources

Washington State has several family support resources for families of children with special health care needs, including hearing loss. One such organization is Washington State Parent-to-Parent, a family support and resource organization funded by DOH and OSPI, that links families of children with special health care needs to other families with similar diagnoses, needs, and/or cultural backgrounds. Parent-to-Parent programs provide mentoring and emotional support through a system of local coordinators who are familiar with community resources for families.

In addition, there are several family support groups specific to families who have children with hearing loss, including: Deaf Connection, the AG Bell Association, and several small support groups associated with early intervention programs. Several electronic based resources have also been developed: a website that includes links to contact information for five parents of children with hearing loss (including a Spanish speaking parent), willing to share their experiences, is currently being established by CHRMC; a listserve for parents of children with hearing loss is maintained by WSDS; and a website (www.deafweb.org) that lists statewide resources and information individuals with hearing loss is available.

5. National Resources

5.A National Center for Hearing Assessment & Management (NCHAM)

The National Center for Hearing Assessment and Management (NCHAM) has been and will continue to be a valuable resource for promoting EHDDI in Washington State. Individuals at both DOH and CHRMC attended the Train-the-Trainers workshop in October 2000, and Karl White, PhD, presented at a conference at CHRMC in Seattle entitled "Universal Newborn Hearing Screening: How to Implement a Successful Program" in February 2001. Curt Whitcomb, the Region X Consultant, has also been helpful in providing input and sharing resources. For instance, Mr. Whitcomb shared an example of a grant application used in Idaho to select hospitals to receive hearing screening equipment. The assistance of NCHAM will continue to be sought.

5.B Centers for Disease Control & Prevention (CDC)

Through the CDC Cooperative Agreement for EHDDI Tracking & Surveillance, DOH has obtained valuable assistance from the CDC staff involved in the Early Hearing Detection and Intervention program, as well as other states involved in the Cooperative Agreement on how to set up a coordinated statewide EHDDI system. The primary way that this has occurred is through monthly conference calls in which DOH staff participate as part of their role in seven committees that have been developed as a part of this Cooperative Agreement to examine particular topics. Through the monthly calls associated with each of these committees, DOH has learned more about successful strategies in other states. In addition, staff from the CDC visited Washington State in February 2001, and provided useful feedback about efforts in Washington. Washington looks forward to continued input from the CDC, and other states that are funded through the EHDDI Tracking & Surveillance Cooperative Agreement.

Identification of Target Population and Service Availability

1. Target Population

The target population for this project is all babies born in Washington. According to the Washington State Center for Health Statistics, there were 79,577 births in Washington in 1999, with the following racial/ethnic breakdown: 79.3% Caucasian, 8.3% Asian or Pacific Islander, 6% African American, 2.8% Native American, and 3.6% of unknown race. Of these, 13% were Hispanic. It is estimated that approximately 2% of babies are born at home each year.

2. Service Availability

In 2000, 23% of infants were screened for hearing loss prior to hospital discharge. Several additional hospitals have implemented or are in the process of implementing hearing screening programs, so this percentage will increase in 2001. At this time, 13 of 72 (18%) of hospitals have universal newborn hearing screening programs, and approximately 33% of babies born in Washington are born in these hospitals. Seven hospitals (8%) operate high risk or selective screening programs, screening approximately 3% of newborns in the state. To date, there have been no efforts to address hearing screening for babies born at home. (Refer to Appendix D for map of hospitals currently screening)

The availability of audiologic and intervention services for children with hearing loss varies across Washington State, due to the large and diverse geographic area and the Cascade Mountain Range that divides the largely rural eastern part of the state from the more populated western part of the state, which includes the three most heavily populated counties in Washington-Snohomish, King, and Pierce. Two programs, both located in the more populous western half of the state, provide comprehensive audiologic and intervention services for infants and toddlers with hearing loss and their families. In other areas of the state, families must rely on the limited services available locally or they must travel to Western Washington. A survey of audiologists conducted in 2000 indicated that there are approximately thirty audiologists that report working with the pediatric population, however, the appropriateness of the services provided is not known. Additionally, the Infant Toddler Early Intervention Program (ITEIP), the IDEA, Part C agency, contracts with agencies in each county to provide services for the 0-3 population, but in most counties there are no services specifically for infants and toddlers with hearing loss. Instead they are served in programs that serve children with a multitude of disabilities or developmental delays.

Needs Assessment

Several assessment activities, both formal and informal, have been undertaken to identify unmet needs and special challenges with regards to EHDDI. In 1997, DOH contracted with CHRMC to perform a formal statewide EHDDI needs assessment. In 1998, an EHDDI Task Force was convened to develop a report about the status of EHDDI for the Washington State Legislature. Since then, needs have been assessed and discussed informally among many stakeholders. The current status and needs of the various components of an EHDDI program are described below.

1. Screening

As described above, only 13 (18%) of birthing hospitals have voluntarily implemented universal newborn hearing screening programs to date, with at least five additional hospitals implementing hearing screening programs before the end of 2001, in partnership with DOH. Despite the low number and the fact that hearing screening is not mandated in Washington, there is much evidence to show that hospitals are willing and interested in providing this service, as it is becoming the standard of care. For example, 20 hospitals to date have indicated interest in receiving financial and technical assistance from the Northwest Lions Foundation for Sight and Hearing to establish a newborn hearing screening program.

There has been little coordination among the hospitals that have been screening; each program operates independently. There are currently no standardized informed consent procedures, screening protocols, communication processes, or reporting mechanisms in place. Efforts towards improving the standardization and coordination among programs have been undertaken, however. CHRMC has played a large role in educating hospitals about appropriate protocols and procedures based upon the Joint Commission on Infant Hearing 2000 Report. Additionally, DOH has organized a best practices workgroup to make formal recommendations about screening practices (informed consent, screening protocols, reporting of results to parents, audiologists, pediatricians, and the EHDDI Tracking & Surveillance System), and this group is scheduled to meet in June.

One important area that has not yet been addressed is coordinating screening for the 2% of infants born at home each year.

2. Audiologic Assessment of Infants with Suspected Hearing Loss

A survey performed by CHRMC in the spring of 2000 indicated that there are approximately 30 audiologists who report working with the pediatric population. However, many indicated using techniques that are inappropriate for newborns and infants. In an effort to provide guidelines about appropriate diagnostic services, DOH convened a "Best Practices "Workgroup in the fall of 2000 to develop a recommended protocol for the audiological assessment of infants with hearing loss, which is currently being finalized. This meeting further revealed the vast differences in pediatric audiologic practice across the state.

Over 25 audiologists have attended each of two trainings that have been conducted by CHRMC on pediatric diagnostic evaluation and amplification. However, a list of audiologists who report meeting the "best practice" recommendations, or who have attended the trainings, has not been developed or disseminated on a statewide level, making it difficult for hospitals to identify appropriate referral sites for infants referred from screening programs.

3. Early Intervention for Infants and Children with Confirmed Hearing Loss

Furthermore, although early intervention services exist for children birth-to-three with disabilities through a variety of providers, not all providers are trained to provide services to infants with hearing loss. In many counties, children with hearing loss are served in programs that serve children with a multitude of disabilities. In 1995-97, WSDS administered a training project to strengthen the skills of birth-to-three providers in the area of hearing loss. However, a recent survey indicated that of the ten participants trained in hearing loss, only five are still working in the birth-to-three field. Thus, there remains a need to provide on-going training to staff providing early intervention services, especially in rural parts of the state. There also remains a need to identify alternative ways that children birth-to-three can access appropriate services instead of being served in programs that serve children with a multitude of disabilities.

4. Medical Home

The CSHCN Program estimates that fewer than 47% of children with special health care needs receive services in the context of a medical home in Washington. There is no data specific to children with hearing loss, however. In order to promote medical homes for children with hearing loss, the proposed EHDDI Tracking & Surveillance System will focus on the pediatrician to coordinate necessary follow-up care, just as the blood spot screening program has done successfully for the past several years. For example, the child's physician will receive a notice when an infant has not been screened, has been referred from screening, or has confirmed hearing loss. However, this system is still in development.

5. Family-to-Family Support

Parents that have been consulted about their experience learning about and linking to support services indicate that there exists a continuing need to ensure that parents are given information about support resources in a timely manner.

6. Cultural Competency

Although cultural competency is diffused into many of the activities that are carried out in Washington State, and many providers serving the birth-to-three population have been trained in this area, there is little data available to indicate whether families perceive that services are being carried out in a culturally competent manner, particularly within the context of EHDDI.

7. EHDDI Tracking System

To date, hospitals with hearing screening programs have been responsible for tracking the infants screened to assure that they receive appropriate follow up. Hospitals have had varying levels of success in performing this function. In order to assist hospitals in this endeavor, DOH is developing an EHDDI Tracking & Surveillance System, though the CDC Cooperative Agreement. The proposed tracking system will utilize the blood spot collection card for collecting data on screening (Phase I), and will have a web-based reporting component for audiologists to report diagnostic results and referral to intervention information (Phase II). The goal of the EHDDI Tracking & Surveillance System, once developed, is to provide a mechanism whereby infants are tracked throughout the screening, diagnosis, and intervention process, to minimize loss to follow-up.

A feasibility study was completed in May, and a Request for Quotations for system development will be released in July. The system to track the reporting of hearing screening results by hospitals (Phase I) is anticipated to be developed by November 2001, with pilot testing among five hospitals that have partnered with DOH for this purpose. A web-based reporting component for the reporting of diagnostic elements (Phase II) is anticipated to be developed by March 2002. Once developed, and pilot hospitals begin to report to the system, the EHDDI Tracking & Surveillance Project Coordinator will be responsible for initiating appropriate follow-up actions with the child's pediatrician (letters/phone calls). Although Washington State is in the very early stages of development, DOH is working closely with the CDC and other states funded through this Cooperative Agreement to develop an effective tracking & surveillance system.

8. Insurance Coverage

As a non-mandated benefit, there is no guarantee that insurers will cover the screening costs associated with EHDDI even if services are available. Because many pregnancies are covered by capitated managed care agreements, hospitals and physicians receive a set payment per pregnancy, and it is not clear how the additional costs associated with newborn hearing screening will be absorbed. In addition, most insurers do not cover amplification and other intervention services for children with hearing loss. Medicaid does provide coverage for hearing aids, but current reimbursement rates are not sufficient to cover the cost of more technologically advanced devices. It has also been reported that audiologists have stopped accepting Medicaid because the reimbursement rates are insufficient to cover the labor costs associated with providing audiological services.

Collaboration and Coordination

In addition to the major partners that have already been described in this proposal, collaboration with many agencies and organizations across the state will be instrumental in reaching project goals. Letters of Support from proposed collaborators can be found in Appendix E.

1.State Level Advisory Committee: EHDDI Implementation Workgroup

The primary way in which collaboration will take place is through the EHDDI Implementation Workgroup, which will serve as an advisory body to the DOH and their contracted partner, CHRMC, throughout the duration of the grant. Membership for this committee has been solicited from a wide range of groups, including professionals involved in the screening and follow-up program and families of children with hearing loss. This body will be asked to develop a workplan that will enhance the project teams ability to meet the goals set forth in this proposal. This workgroup will be divided into subcommittees to work on specific priorities (e.g. reimbursement, medical home, data and tracking). A complete roster of members is included in Appendix F, and major collaborators have been described in the "Available Resources Section."

2. Best Practice Workgroups

"Best Practice" Workgroups for Screening, Diagnosis, and Intervention will be available for providing guidance in each of these areas. For instance, a Diagnostic Best Practice Workgroup, comprised of eleven audiologists across the state, has been established and was convened in November 2000 to develop a protocol for audiological assessment of infants referred from hearing screening. A Screening Best Practice Workgroup is scheduled to meet in late June, and an Intervention Best Practice Workgroup is also planned. These groups will all have at least one member represented on the EHDDI Implementation Workgroup and will act as standing committees to address issues that arise specific to their area of expertise. Rosters of existing best practice workgroups can be found in Appendix G.

3. Interagency Intervention Workgroup

An Interagency Intervention Workgroup has been developed to specifically address the policy issues surrounding the provision of intervention services for children with hearing loss in Washington State. This group is comprised of staff from DOH, CHRMC, and three state agencies and/or programs that are involved in providing or supporting early intervention services for children 0-3 with hearing loss-Office of the Superintendent for Public Instruction/Special Education (OSPI), Department of Social and Health Services/Infant Toddler Early Intervention Program (ITEIP), and Washington Sensory Disabilities Services (WSDS). While all of these groups will also be represented on the EHDDI Implementation Workgroup, this smaller workgroup will be able to better examine the complex policy issues surrounding the provision of intervention services in Washington State and develop strategies toward improving access to and quality of services.

Goals and Objectives

1. To increase to 95% the proportion of newborns who receive physiologic screening for hearing loss prior to hospital discharge, or before one month of age in Washington, with target goals of 60% by the end of Year 01, 80% by the end of Year 02, 90% by the end of Year 03, and 95% or greater by the end of Year 04.

Objective 1.A By November 1, 2001, develop a standardized technical assistance notebook for hospitals implementing new UNHS programs or evaluating existing programs, which includes recommended protocols for universal newborn hearing screening programs in Washington State. Objective 1.B Beginning November 15, 2001, provide on-site and telephone technical assistance to all birthing hospitals in Washington implementing a new UNHS program or evaluating an existing program. (on-going)

Objective 1.C Beginning December 15, 2001 assist at least twenty-one hospitals in purchasing hearing screening equipment directly, through the Northwest Lions Foundation for Sight and Hearing and/or small grant opportunities, and assist other hospitals in identifying alternative opportunities to get UNHS programs started (e.g. local Lions clubs). (on-going)

Objective 1.D By January 1, 2002 develop a mechanism to identify and follow-up newborns that have not received screening within three week of life, through the EHDDI Tracking & Surveillance System.

Objective 1.E By March 1, 2002, develop a plan for promoting hearing screening for babies born at home or out-of-state, in consultation with the EHDDI Implementation Workgroup.

2. To increase the proportion of newborns referred from screening who receive appropriate audiogical assessment by three months of age.

Objective 2.A By April 1, 2002, establish a system to improve the referral process from screening to diagnosis, by developing a list of facilities where pediatric audiologic diagnostic evaluation is available, and disseminating to hospitals and physicians on a continuing basis.

Objective 2.B By May 1, 2002, develop a mechanism for tracking infants referred from screening to diagnosis and a mechanism to provide follow-up to infants that have not received an audiologic assessment by three months of age, through the EHDDI Tracking & Surveillance System.

Objective 2.C By December 30, 2004, increase the expertise of audiologists regarding infant diagnostic and amplification services.

3. To increase the number of newborns with hearing loss who are enrolled in appropriate early intervention by six months of age.

Objective 3.A By June 1, 2002, establish a system to improve the referral process from diagnosis to intervention, by developing an educational brochure about various intervention options as well as specific programs and resources for children with hearing loss across the state, and disseminating broadly to audiologists, pediatricians, and ITEIP contracted agencies.

Objective 3.B By June 1, 2002, develop a mechanism for tracking infants diagnosed with hearing loss from diagnosis to intervention, and a mechanism to provide follow-up to infants that are not enrolled in early intervention by six months of age, through the EHDDI Tracking & Surveillance System.

Objective 3.C By March 1, 2005, increase the number of birth-to-three providers who have expertise serving infants with hearing loss.

Objective 3.D By June 30, 2005, develop and implement at least two additional strategies to improve the availability and accessibility of services for children birth-to-three with hearing loss, through the Interagency Intervention Workgroup (CHRMC, DOH, OSPI, WSDS, ITEIP).

4. To increase awareness and knowledge about early hearing loss detection, diagnosis, and intervention among the general public, parents, hospital administrators, physicians, audiologists, birth-to-three services providers and others.

Objective 4.A Beginning October 1, 2001, display the mobile EHDDI board at county fairs, health fairs, and other public events. (on-going)

Objective 4.B Beginning October 1, 2001, disseminate a newsletter to hospital administrators, pediatricians, audiologists, and birth-to-three providers about EHDDI on a quarterly basis. (on-going)

Objective 4.C Beginning October 1, 2001, update the EHDDI website maintained by CHRMC on a continuing basis. (on-going)

Objective 4.D Beginning October 1, 2001, encourage hospitals to utilize developed parent educational materials or assist them in identifying additional strategies to educate parents about universal newborn hearing screening. (on-going)

Objective 4.E Beginning October 1, 2001, identify opportunities to inform obstetricians, nurse midwives, pediatricians, family practice physicians, and other health care professionals about EHDDI (e.g. grand rounds, professional meetings).

5. To promote the provision of services within the context of a medical home.

Objective 5.B By February 1, 2002 disseminate EHDDI educational materials to the 15 Medical Home Teams and members of the Washington State AAP.

Objective 5.A By February 1, 2002, develop a mechanism to identify an infant's medical home and to coordinate follow-up services through an infant's medical home, through the EHDDI Tracking & Surveillance System.

Objective 5.C Beginning August 1, 2002 identify hospitals with UNHS programs that are in communities with medical home teams, and assist in informing hospitals and pediatricians about the medical home teams and how they can be utilized to better serve families throughout the EHDDI process. (on-going)

6. To promote linkage to culturally competent, family-to-family support throughout all components of EHDDI -- screening, diagnosis, and intervention.

Objective 6.A By April 1, 2002, perform an inventory of national and state parent support resources and include in the parent resource book on intervention, and on the EHDDI website.

Objective 6.B By July 1, 2002, contact family support groups across the state to educate them about EHDDI and strategize ways in which they can best meet the needs of families within the context of EHDDI . (on-going)

Objective 6.C By December 1, 2002 (Year 02) ensure that all educational materials are available in Spanish, and assess the need to translate developed EHDDI educational materials into additional languages.

Objective 6.D By June 1, 2005 (Year 04) enhance the cultural competency of service providers involved in the provision of EHDDI services.

7. To improve public and private insurance coverage of detection, diagnosis, and intervention services.

Objective 7.A By January 1, 2002, identify members of the EHDDI Implementation Workgroup interested in working on the issue of reimbursement.

Objective 7.B By June 1, 2002 develop a workplan for assessing and addressing the reimbursement issue.

Objective 7.C By June 1, 2003 (Year 02), implement at least two strategies identified in the workplan.

Required Resources

Within the Department of Health, 0.1 FTE of a Program Manager is required to be the Project Director who will provide general oversight to the project ensuring all goals and objectives are met in the specified time frames. 0.4 FTE of a Health Services Consultant 3 is required to manage the contractual relationship with CHRMC and other partners, and to staff the EHDDI Implementation Workgroup including planning meetings, creating agendas, inviting speakers and guests, facilitating the group in making key decisions and setting priorities, disseminating minutes, and assigning follow-up tasks to workgroup members. In addition, 1.0 FTE of a Health Services Consultant 2, the EHDDI Tracking & Surveillance Coordinator, is required to initiate and coordinate reporting about screening and diagnosis by hospitals and audiologists to the EHDDI Tracking & Surveillance System, to initiate follow-up actions when results are not received in established timeframes in order to minimize loss to follow-up, and to provide data that will contribute to evaluating the effectiveness of project activities in meeting stated goals. This position is funded through the CDC EHDDI Tracking & Surveillance Cooperative Agreement, and for the purposes of this grant will be provided in-kind. Funding for travel is also required to convene members of the EHDDI Implementation Workgroup. Meeting supplies and light refreshments will also be needed for the workgroup meetings.

In addition, contractual resources are needed to support 0.1 FTE of the CHRMC Project Director who provides great expertise in universal newborn hearing screening to the project. Resources are required to hire a 1.0 FTE Program Coordinator within CHRMC that will be responsible for carrying out most project activities, in collaboration with the CHRMC project team. Currently, there is no one person at CHRMC whose time is completely dedicated to carrying out activities toward advancing EHDDI statewide. Through this contract, the current Administrative Coordinator, Esther Hammershlag, will fill that role. Ms Hammershlag has been instrumental in CHRMC EHDDI activities to date and will easily take on the additional responsibilities associated with this contract. In addition, the contract will support travel for the coordinator and other member of the project team to hospitals and communities to provide direct consultation and technical assistance in setting up universal newborn hearing screening programs coordinated with appropriate follow up services; workshops on implementing a universal newborn hearing screening program in eastern Washington; and trainings for audiologists across the state. It will also provide support for the development, printing, and mailing of educational materials to medical home teams, members of the AAP, and other involved parties that will be developed through this project.

Contractual resources are also needed throughout the grant period in order to increase the number of training opportunities provided by the Washington Sensory Disability Services to birth-to-three providers about hearing loss. Trainings will be both in-person and via the statewide videoconferencing system. Contractual resources have been requested in the third and fourth year of the grant for the purpose of hosting cultural competency trainings to select service providers. Preliminary conversations with a potential contractor have taken place, but a decision about the contractor will not be determined until the second year of the grant.

Refer to Appendix H for the Curriculum Vitae of individuals involved in this project, requested and in-kind support. Refer to Appendix I for job descriptions of all individuals involved in this project.

Project Methodology

1. To increase to 95% the proportion of newborns who receive physiologic screening for hearing loss prior to hospital discharge or before one month of age in Washington, with target goals of 60% by the end of Year 01, 80% by the end of Year 02, 90% by the end of Year 03, and 95% or greater by the end of Year 04.

A Best Practices Workgroup is being convened by DOH in June to develop formal statewide recommendations to guide the structure of screening programs in Washington, including: informed consent, staffing, acceptable screening protocols, communicating and reporting of results, and quality assurance. Once these protocols are finalized, they will be incorporated into a standardized technical assistance notebook for hospitals to use in implementing new UNHS programs or evaluating existing programs.

The CHRMC Project Team will provide on-site and telephone consultation (thru the 1-800 telephone hotline at CHRMC) to birthing hospitals about universal newborn hearing screening throughout the grant period. Consultation will be provided to (1) hospitals that have not yet implemented a UNHS program, with emphasis on providing technical assistance to hospitals obtaining hearing screening equipment from the NLF and large birthing hospitals and (2) hospitals that have already implemented hearing screening programs, but need assistance in refining program structure due to high referral rates or other programmatic problems. These trainings will place emphasis on the importance of timely linkage medical and audiologic diagnostic and intervention services, as well as family-to-family support resources, and linkage to the medical home.

In order to offset the cost of initiating universal newborn hearing screening programs for hospitals across the state, CHRMC and NLF will identify approximately 15 hospitals to receive funding to purchase hearing screening equipment or other supplies through an application process, in Years 01 and Years 02. In addition, the NLF and CHRMC will assist hospitals in identifying additional ways to raise money for equipment, including but not limited to partnering with local Lions Clubs. In Years 03 and Years 04 of the grant, grant funds will be set aside to offer small grant opportunities for those hospitals that have not yet implemented a universal newborn hearing screening program. Reimbursement issues will also be examined, as reimbursement for hearing screening will also impact the number and timeliness with which UNHS programs are implemented; this is addressed in Goal #7.

In order to address the screening of babies born at home or out-of-state, the EHDDI Implementation Workgroup will be asked to strategize ways to increase hearing screening these infants. Anticipated suggestions include collaborating with the Midwifery Association of Washington to educate midwives about the importance of hearing screening, and to collaborate with the training that the metabolic newborn hearing screening program conducts to midwives.

Lastly, a mechanism to identify infants that have not been screened will be developed through the EHDDI Tracking & Surveillance System in the first year of the grant. This process will be modeled after the process used by the metabolic screening program, whereby infants for which screening results have been received are compared to hospital birth rosters, sent weekly to the NBS program. An addendum to the blood spot collection card for the purpose of reporting hearing screening results has been developed, and will be piloted among the five hospitals that have partnered with DOH.

2. To increase the proportion of newborns referred from screening who receive appropriate audiogic assessment by three months of age.

The EHDDI Implementation Workgroup will be charged with developing a process for identifying appropriate audiologic assessment referral sites, utilizing the recommendations of the Diagnostic Best Practices Workgroup. Preliminary counsel from the DOH Risk Manager has indicated that maintaining a list may not be within the authority of DOH, so other options will be explored. Once developed, it will be disseminated to hospitals and physicians to improve the referral process from screening to diagnosis, for those infants that are referred from screening.

Furthermore, a mechanism to identify and track infants that have been referred from screening as reported through an addendum to the blood spot collection card will be developed through the EHDDI Tracking & Surveillance System. Infants referred from screening will be kept in a "tickler" system until the results of audiologic diagnosis are reported. Initially, diagnostic information will have to be sought out through telephone calls and letters by the EHDDI Tracking & Surveillance Coordinator. Eventually, however, it is planned that this diagnostic information will be reported through a web-based reporting system, and information about medical diagnosis, including the offering of genetic testing, will also be collected for infants with confirmed hearing loss.

The expertise of the audiologists interested in providing audiologic assessment services will need to be continually enhanced. Therefore, CHRMC will conduct trainings for audiologists throughout the grant period. In Year 01, a training in Eastern Washington for audiologists on the diagnostic audiologic evaluation of infants will be performed. In subsequent grant years, training needs will further be assessed and training plans will be adapted accordingly. In addition to workshops, on-site visits to audiologist offices by CHRMC pediatric audiologists, or the development of training opportunities within the CHRMC Division of Pediatric Audiology will be explored, as these may be more effective ways to provide hands-on learning to audiologists throughout the state.

3. To increase the number of newborns with hearing loss who are enrolled in an appropriate early intervention program by six months of age.

In order to improve the referral process from diagnosis to intervention, an educational brochure about various intervention options, as well as specific programs and resources for children with hearing loss across the state, will be developed. This brochure will also improve the consistency of information that parents receive about intervention options and services available throughout the state. It will be disseminated to audiologists and ITEIP contracted birth-to-three providers statewide. This brochure will be modeled after a current educational brochure that has been developed and used by CHRMC. The information that is included in this brochure will also be added to the EHDDI website.

In an effort to increase the expertise of birth-to-three service providers in the area of serving infants and children with hearing loss, a contract will be initiated with WSDS to increase the number of providers that can access trainings on hearing loss, though both in-person venues and the statewide videoconferencing network housed in each school district across the state. WSDS will collaborate with CHRMC and other birth-to-three service providers for children with hearing loss to conduct these trainings throughout the grant.

In addition, the development of the Interagency Intervention Workgroup, comprised of representatives from state agencies that have a role in the provision of early intervention services, is an important step toward addressing this goal, as this group will be charged with working on the complex policy issues surrounding the lack of comprehensive intervention services for children birth-to-three with hearing loss in most counties of the state. This workgroup will develop a workplan outlining realistic, time-sensitive steps to improve the situation. By the fourth year of the grant, at least two strategies in this workplan should be implemented to improve the availability and accessibility of services for children birth-to-three with hearing loss.

Lastly, the EHDDI Tracking & Surveillance System is being developed with the goal of including a mechanism by which information about where an infant has been referred for intervention services can be collected and tracked. This information will assist in assuring that infants are enrolled in intervention services by six months of age.

4. To increase awareness and knowledge about early hearing loss detection, diagnosis, and intervention among the general public, parents, hospital administrators, physicians, audiologists, birth-to-three services providers and others.

Increasing awareness to the various audiences described about EHDDI is an important activity, as it is the first step toward creating an environment where service providers understand the importance of early hearing screening, as well as coordinating with appropriate diagnostic and intervention services and family support resources. Several activities will be undertaken to raise general awareness and knowledge about EHDDI.

First, project staff will display the mobile EHDDI board developed by CHRMC and NLF at public events, such as county and health fairs. Second, an EHDDI newsletter will be sent out on a quarterly basis to hospitals, nurses, physicians, audiologists, and birth-to-three service providers about EHDDI in Washington. This newsletter has been piloted once, and has been well received. Continued dissemination to such a large audience is not possible, however, under current available funds. Third, an EHDDI website will be launched and updated on a continuous basis. Fourth, project staff will seek out opportunities to make presentations at hospital grand rounds, professional society meetings, and other relevant conferences and workshops to increase knowledge about EHDDI to obstetricians, nurses, physicians, and other health care professionals. Of particular emphasis to these professionals will be the importance of medical diagnosis for infants with hearing loss, including the offering of genetic testing, in addition to audiological diagnosis. Lastly, the CHRMC project team will encourage hospitals implementing UNHS programs to utilize the parent education materials that have been developed and will be included in the technical assistance notebooks, and will also assist hospitals in strategizing other ways to educate parents about EHDDI (e.g. videos).

5. To promote the provision of services within the context of a medical home.

Three approaches will be utilized to meet this goal. First, the EHDDI Tracking & Surveillance System is being designed such that the pediatrician will be identified and contacted when an infant has been missed or referred from screening, and the pediatrician will be encouraged to coordinate the necessary follow-up services for the child, just as the metabolic newborn screening program has done successfully. Once the tracking system is developed, and reporting via an addendum to the blood spot card is initiated, the ability to identify the pediatrician, as well as their cooperation in coordinating services, will be assessed, and alternate strategies for identifying and/or encouraging service coordination will be developed if necessary. Second, the project team will take advantage of partnerships with the Washington Chapter of the American Academy of Pediatrics and the Medical Home Leadership Network to educate pediatricians and medical home teams about EHDDI and their role in service coordination for infants throughout the EHDDI process, particularly in the assurance of medical diagnosis, including offering of genetic testing, in addition to audiological diagnosis.

Third, the Project Coordinator will identify those hospitals with UNHS programs that are in communities with medical home teams and will strategize ways that the medical home teams can be used to serve families throughout the EHDDI process.

6. To promote linkage to culturally competent, family-to-family support throughout all components of EHDDI -- screening, diagnosis, and intervention.

Existing family support resources will be utilized for the purpose of linking families who have infants referred from screening and/or diagnosed with hearing loss to family support. To the extent possible, project staff will maintain an inventory of family support resources (both general support resources and support resources specific to families of children with hearing loss, nationally, statewide, and locally) and will educate hospitals and audiologists about these resources. Project staff will also educate existing parent support groups, such as Parent-to-Parent, about EHDDI efforts and strategize ways to best meet the needs of families of children who are referred from screening and/or are diagnosed with hearing loss through these programs. In order to promote cultural competency, parent educational materials will be translated into Spanish, and the translation of parent educational materials into additional languages will be assessed. Furthermore, in the third and fourth year of the grant, funds will be set aside to sponsor cultural competency training for select service providers. Preliminary conversations with an individual who coordinates cultural competency training, based on a twelve module curriculum developed by George Mason University, has occurred.

7. To improve public and private coverage of detection, diagnosis, and intervention services.

Many hospitals have been reluctant to implement hearing screening programs due to the costs associated with purchasing the equipment and maintaining staffing levels to perform the screening and other necessary programmatic functions. While several funding sources have been developed for the purchase of hearing screening equipment (DOH, NLF, local Lions Clubs), insurance coverage for hearing screening would assist hospitals in covering the costs of on-going programmatic functions. Furthermore, improved reimbursement rates for audiological services, especially those provided by Medicaid, may increase the number of audiologists desiring to serve infants, thus improving the availability and accessibility of audiologists to provide audiologic assessment services. Therefore, a major goal of this project is to improve both public and private coverage of early hearing loss detection, diagnosis, and intervention services. Several members of the EHDDI Implementation Workgroup will be asked to form a subcommittee to examine reimbursement issues more closely, and to develop a workplan for addressing this issue. In the second year of the grant, it will be expected that at least two strategies will be implemented from the workplan.

Plan for Evaluation

Evaluation of grant activities will occur annually. In order to evaluate the effectiveness of these activities, process and outcome evaluations will be conducted. The process evaluation will consist of monitoring the extent to which activities are being done on time, their degree of completeness, and the quality of work performed.

The outcome evaluation will consist of determining whether the activities undertaken have affected outcomes with regards to the goals stated in this proposal. Outcome measures are described below.

1. By January 31, 2002 and annually thereafter, determine the proportion of newborns screened for hearing loss prior to hospital discharge or before 1 month of age.

The proportion of newborns screened prior to hospital discharge is collected in January of each year for the Maternal & Child Health Block Grant. In 1998, 3.6% of infants were reported to be screened, in 1999, 7.2% of infants were reported to be screened, and in 2000, 23% of infants were reported to be screened. Subsequent measures will be available each year. Currently, the quality of the data are dependent upon the quality of hospital tracking systems. The EHDDI Tracking & Surveillance System (in development) will improve the quality of this data, as it is planned that hospitals will report directly to the state via the blood spot collection card.

2. By August 1, 2002 and annually thereafter determine the number of audiologists who can perform the audiological assessment protocol recommended by the Best Practices Workgroup.

Since this proposal includes disseminating an audiological assessment protocol and conducting training to audiologists, the number of audiologists who are able to perform the recommended audiological assessment protocol is an important measure. Availability of qualified persons to perform these services is one factor in determining the timeliness in which infants referred from screening receive audiological assessment.

3. By January 1, 2003 (Year 02) and annually thereafter determine the proportion of newborns who are referred from screening and receive appropriate audiological assessment by three months of age.

The EHDDI Tracking & Surveillance System (in development) is being designed to enable reporting on this information. This information is expected to be fully available in the second year of this grant. Interim measures will include qualitative data from audiologists, hospital staff, and parents regarding the number and ages of the infants at diagnosis.

4. By August 1, 2002 and annually thereafter, determine the number of birth-to-three providers trained in serving children with hearing loss.

The project team will track the number of service providers seeking additional training in serving young children with hearing loss, in collaboration with Washington Sensory Disability Services.

5. By May 1, 2002 an annually thereafter, determine the number of newborns with hearing loss who are enrolled in early intervention.

Washington Sensory Disability Services collects this information annually. Baseline data for this measure is available from 1999, when it was reported by the Washington Sensory Disabilities Project that there were 177 children with hearing loss under three years of age enrolled in early intervention. The EHDDI Tracking & Surveillance System is also being designed to capture this information, but this capability will not be available until the third year of the grant.

6. By August 1, 2003 (Year 02), determine the number of infants with a medical home.

The CSHCN and MCH Assessment Programs are working with the Foundation for Accountability (FACCT) in Oregon, a nationally recognized leader in measuring quality assurance for children with special health care needs, to develop a method for measuring the MCHB national performance measure related to the percent of children with special needs with a medical home in Washington. Several questions have been developed to assess the seven elements of a medical home, and these questions will be utilized in a survey that will be administered to a sample of families across the state who have had children referred undergo universal newborn hearing screening.

6. By March 1, 2004 (Year 03) develop and conduct a survey of parents to determine satisfaction with EHDDI services, including the availability of family-to-family support.

The above mentioned survey will be also be created to assess family perceptions of access to family-to-family support, and administered to a sample of families across the state that have had children undergo universal newborn hearing screening.

7. Beginning February 1, 2002, track documented changes in Medicaid and/or private insurance coverage of detection, diagnosis, and intervention services and/or equipment for infants and children with hearing loss.

DOH, CHRMC, and the EHDDI Implementation Workgroup will monitor changes in coverage of services, as noted by service providers as well as public and private payers.

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2 Mayer, C., Witte, J., Hildmann, A., Hennecke, K., Schunck, K., Mauk, K., Franke, U., Fahnstich, H.m Rabe, H., Rosssi, R., Hartmann, S., Gortner, L. Pediatrics, 1999; 40: 900-904.

3 Mason, J., Herrmann, K. Universal infant hearing screening by automated auditory brainstem response measurement. Pediatrics, 1998; 101: 221-228.

4 Mehl, A., Thomson, V. Newborn hearing screening: the great omission. Pediatrics, 1998; 101 (1) URL: http://www.pediatrics.org/cgi/content/full/101/1/e4

5 Elssman, S., Matkin, N., Sabo, M. Early identification of congenital sensory neural hearing impairment. The Hearing Journal, 1987; 40: 13-18.

6 Harrison, M., Roush, J. Age of suspicion, identification, and intervention for infants and young children with hearing loss: a national study. Ear and Hearing, 1996; 17: 56-62

7 Mace, A., Wallace, K., Whan, M., Stelmachowic, P. 1991. Relevant factors in the identification of hearing loss. Ear and Hearing, 1991; 12: 287-93.