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ALASKA Project Narrative Table of Contents I. INTRODUCTION PROJECT NARATIVE I. INTRODUCTION 1.1 Background Alaska contains roughly 586,412 square miles of land. Alaska's estimated population on July 1, 1997 was 611,300, or slightly more than one person per square mile. Alaska also claims the most northern, western and eastern points of land in the United States; more miles of coastline than all of the contiguous 48 states combined (6,640 miles, not including islands); over 5,000 glaciers; over 3 million fresh-water lakes (one of which, Iliamna, is the second largest in the United States); and 3,000 rivers, of which the Yukon is the third longest in the United States. Much of the coastline and fresh-water areas are used as transportation corridors as well as fishing grounds. Remote lands are used for hunting and recreational activities. The vast wilderness of Alaska is dotted with isolated villages, some with fewer than a dozen people. Many villages lack basic conveniences like running water and remain accessible only by small plane or boat. Throughout rural Alaska, also called the Bush, very few local economies exist. Many villagers live off the land and its wildlife; survival depends on hunting, fishing, trapping and gathering wild berries. Unique climatic conditions affect Alaska's people. Temperatures can range from as high as 100°F to lows that approach -80°F. Alaska experiences extremes in precipitation as well. Some areas of the state may receive up to 200 inches of precipitation annually while other areas receive as little as 12 inches. Not surprisingly, Alaska has few roads. Alaska ranks 47th among the 50 states in total road miles. Of its 13,485 miles of roads, only 1,089 are classified as interstate highways. Only five of Alaska's urban centers are connected by road. For example, Juneau, the state's capital and third largest city, is accessible only by plane or boat. Travel by road often requires considerable time, due to the great distances between towns and adverse weather conditions. Many towns and villages in Alaska are accessible only by water or air. The Alaska Marine Highway provides ferry service along 2,229 miles of routes to 28 Alaska towns and villages along the southeast and southwest coasts of Alaska as well as Prince Rupert, British Columbia, and Bellingham, Washington. In many cases, travel by air is the only feasible mode of transportation due to the distances involved and lack of roads. Intrastate air travel in Alaska often involves greater distances than interstate travel in the lower 48. Fares for air travel can be expensive. With diverse cultures, sparse population, severe temperatures, vast coastline and outdoor lifestyles, the state experiences many unique health care challenges. One such challenge is providing adequate medical care and health care assistance to residents who live in remote areas of the state. Alaska is not divided into counties, and while some boroughs have been formed, many have not elected to assume health powers. Much of the state remains "unorganized" with the state government fulfilling responsibilities otherwise normally handled by local county and municipal governments. Communities may organize (incorporate) whether or not they are located within the boundaries of an organized borough. With some exceptions, communities have not elected to assume the responsibility of health powers. Primarily, governmental health and social service functions have been, and continue to be, the responsibility of the state and federal governments - both of which increasingly carry out the services through various granting and contracting mechanisms. The native health corporations, the Alaska compact between the Indian Health Service and the individual tribes, the State of Alaska and private entities provide health care in these areas through funding for public health nurses and other health care workers. Funding for services varies from self-payment and private insurance, to federal programs such as Medicaid and Indian Health Service benefits, to a variety of state programs, which pay for specific types of care, and grants. 1.2 Population/Demographics Demographically, whites make up 74.2 percent of the total population; Alaska Natives/Native Americans, 16.7 percent; blacks, 4.5 percent; and Asian and Pacific Islanders, 4.6 percent. Males comprise 52.1 percent and females comprise 47.9 percent of the population. Residents of the Anchorage census area comprised 41.7 percent of the state's population during 1997. About 78.9 percent of Alaska's population was concentrated in six census areas: Anchorage, Fairbanks, Juneau, Kenai, Ketchikan and Matanuska-Susitna. There were 9,956 Alaska resident live births in 1997 and 9,971 occurring births. Of the 9,971 births which occurred in Alaska during 1997, 5,148 (52%) occurred in the Anchorage Borough, and 1,628 (17%) in the Fairbanks North Star Borough.1 Additional information on occurring and resident births by census area is available in Appendix 1. II. PURPOSE OF THE PROJECT The State of Alaska seeks support for the purposes of planning, developing and implementing a sustainable statewide universal newborn hearing screening program. Components of the intended program include (1) physiological screening prior to hospital discharge (2) coordination with the child's medical home, family support and existing state and community-based resources (3) audiological evaluation by three months of age, and (4) enrollment in appropriate early intervention by six months of age. The Universal Newborn Hearing Screening (UNHS) program, the newest Children with Special Health Care Needs (CSHCN) initiative in Alaska will ensure that early identification and early intervention become the standard of care for all children with significant hearing loss. 2.1 Problem Statement 2.2 Rationale/Intervention Universal newborn hearing screening is endorsed by the National Institutes of Health (NIH), Consensus Development Panel, the Joint Committee on Infant Hearing, the American Academy of Pediatrics, the American Academy of Audiology, the Commission on Education of the Deaf, and Healthy People 2010. 2.3 Application Category While Alaska may well exceed a 50 percent screening rate by 2004, screening is only one component of a comprehensive program. The UNHS initiative will, therefore, concentrate on the development of a comprehensive state plan and systems which will ensure that children who fail initial or follow-up hearing screenings are appropriately diagnosed, referred and beginning interventions in family-centered, community-based programs by six months of age. Resources will not be directed to expanding voluntary hearing screening until all components of the universal newborn hearing screening program have been significantly developed to guarantee timely diagnosis and early intervention in Alaska. 2.4 Goals and Outcomes III. ORGANIZATIONAL EXPERIENCE AND CAPACITY The planning, development and implementation of a newborn hearing project in Alaska will be based in the Department of Health and Social Services (DHSS), Division of Public Health (DPH), Section of Maternal, Child and Family Health (MCFH), which is Alaska's Title V agency. The program will be located in the Special Needs Services Unit (SNSU), which administers all Title V CSHCN programs in the state. (See Appendix 3 for DHSS and Division of Public Health organizational charts.) The Section of MCFH also has a strong history of proven skill and experience in planning, developing, implementing, and evaluating diverse programs and projects which target the broader population of young children and their families. Among them are the Supplemental Nutrition Program for Women, Infants and Children (WIC), Community Integrated Service Systems (CISS) grant for Home Visitation; Maternal Infant Mortality Review (MIMR); Birth Defects Registry; Domestic Violence Project; Healthy Families of Alaska (HFAk); and Alaska Fetal Alcohol Syndrome (FAS) Surveillance Project. The Section also contains an Epidemiology Unit which provides support for epidemiological activities, data management, and statistical analysis to the entire Title V agency. The Section administers program services through grants to private, nonprofit agencies; funding services and travel for individuals with special needs; and for hiring and/or contracting with qualified care providers as well as program consultants to train and monitor other providers. 3.1 Universal Newborn Hearing Screening Experience IV. ADMINISTRATION AND ORGANIZATION The newborn hearing project will be based in the Section of MCFH, Alaska's Title V agency. The Title V program will be located in the Special Needs Services Unit (SNSU), which administers all CSHCN programs in the state. Among the SNSU programs are the Early Intervention/Infant Learning Program (EI/ILP), including Part C of IDEA; Newborn Metabolic Screening; Genetics Clinics; Specialty Clinics, including cardiac, neurodevelopmental, and cleft lip and palate clinics; and Health Care Program for Children with Special Needs (HCP-CSN), which provides limited medical/treatment services for eligible diagnoses and disabilities. A three-year State Systems Development Initiative (SSDI) project intended to define and describe the CSHCN population in Alaska was also located in SNSU. Karen Martinek, Alaska's CSHCN Director, who is also responsible for the coordination of the statewide EI/ILP, manages the Unit. (See Appendix 4 for an MCFH organizational chart.) The Section collaborates with many partners, both public and private, in the routine course of its activities. Partnerships are especially strong in the planning, delivery and evaluation of CSHCN programs and activities. The UNHS initiative will require building upon existing relationships and developing some new ones. The creation of a statewide Advisory Board as discussed in 7.2 Barriers and Proposed Strategies is expected to include many of these partners and should formalize relationships. It is anticipated that written Memoranda of Agreement will be developed as needed to promote and protect confidentiality and security of data, particularly in follow-up, tracking and referral activities for children suspected of having hearing loss. In September 1999, the CSHCN Director was funded to participate in the Annual Directors of Speech and Hearing Programs in State Health and Welfare Agencies (DSHPSWA) meeting in Chicago. The meeting, cosponsored by the Marion Downs Center for Infant Hearing, provided an extremely valuable opportunity to network with other states and benefit from their experience and expertise in planning, developing and implementing universal newborn hearing screening programs. V. AVAILABLE RESOURCES Existing staff resources available to this initiative include Karen Martinek, the CSHCN Director and EI/ILP Coordinator; Christy LeBlond, Genetics Counselor and Newborn Metabolic Screening Program Coordinator; and Pam Muth, Title V Director. The entire Maternal, Child and Family Health staff shares a suite of furnished offices which will include space for additional project personnel to be hired as described in the X. Required Resources section of this application. The existing staff will require no funding from this grant for salary, equipment or facilities. VI. IDENTIFICATION OF TARGET POPULATION The target population for this initiative includes all resident births in Alaska. Although this population-based activity is ultimately intended to provide newborn hearing screening to 85 percent of children born in Alaska, this will not occur during the four-year demonstration project period. Voluntary newborn hearing screening has been in place at two birth facilities in Fairbanks and in the NICUs at both Columbia Alaska Regional Hospital and Providence Alaska Medical Center in Anchorage (Table 1). Universal newborn hearing screening was implemented for all deliveries at Providence Alaska Medical Center, Anchorage, in August 1999. (See Appendix 5, Providence Alaska Medical Center Newborn Hearing Screening, for a schematic of their program.
In a given year, the births at the Fairbanks facilities and Providence, alone, account for almost 40 percent of all resident births in Alaska. In the near future, Alaska Native Medical Center, Anchorage, with approximately 1000 births/year, and small facilities in Nome and Kotzebue, each with approximately 100 births/year, expect to implement universal newborn hearing screening activities. These additional programs will increase the number of statewide births screened to approximately 5,100 or 51 percent of all births. This project will specifically target planning, development, and implementation of UNHS components to ensure diagnosis by three months, coordination of services and enrollment in early intervention by six months of age. 6.1 Service Availability The availability of medical specialty services varies by specialty and tends to exist only in larger or more urban areas of Alaska. Pediatricians practice in nine Alaskan communities, while otolaryngologists are available in only hub communities. In all other communities, newborns requiring referrals, service coordination, or evaluations from pediatricians or otolaryngologists face issues of access to appropriate services. This barrier reduces the likelihood of timely clinical follow-up, referral, diagnosis and intervention. Subspecialty clinical genetics services are available in hub communities through contractual arrangements with the Children's Hospital and Medical Center, Seattle for a pediatric medical geneticist. The geneticist and Christy LeBlond, the genetic counselor located in the SNSU, collaborate in this longstanding CSHCN program, which provides itinerant genetics clinics, evaluations and counseling. Clinics are currently scheduled in Anchorage (12 days), Fairbanks (4 days), Juneau (2 days), Bethel (1 day), Ketchikan (1 day), Kodiak (1 day) and Sitka (1 day), for a total of 16 clinics or 22 days this year. In the future, clinics may be made available in additional areas based upon unmet need. A wide range of early intervention services is also available in Alaska. Federal and state laws set the direction for comprehensive, collaborative, community-based, family-centered services that are designed to meet the developmental needs of the child within a family context. Seventeen regional Infant Learning Program grantees (nonprofit agencies) deliver these comprehensive home/community-based services to eligible infants and toddlers and their families. (See Appendix 6 EI/ILP Service Regions and Grantees, 2000.) The programs vary widely by staff and region size and deliver individualized early intervention services which ensure access and cultural competence for all families. For example, one program, housed in the Tanana Chiefs Conference (TCC), a nonprofit native corporation, has three itinerant or traveling teachers who service a region that covers 56 villages and 235,000 square miles in the interior of Alaska, with an estimated population of 13,000 people. At the other extreme, one urban program in Anchorage serves approximately one-third of all enrolled children in Alaska and has a staff of 30 early interventionists, therapists and program assistants.
Early intervention services include Child Find, developmental screening, evaluation/assessment, family service coordination, education, therapies and other services to meet each child's unique developmental needs. The Alaska EI/ILP has a home-based, family-centered service model as its core principle. Service providers have a very strong commitment to services within the natural home and community settings to the maximum extent possible. Two statewide specialized EI/ILPs also serve children who experience low-incidence disabilities and are enrolled in their community-based EI/ILP. They are the Vision Impairment Services for Infants and Toddlers (VISIT) program and the AEIHR program. Both are located in Anchorage and provide consultative and itinerant services throughout Alaska. Additionally, the Rural Evaluation Travel Team (RETT), housed in the Anchorage-based EI/ILP, Program for Infants and Children (PIC) provides multidisciplinary evaluations for children with involved medical and developmental needs in rural programs that do not have a based community-based evaluation team which includes physical therapists, occupational therapists and speech/language pathologists (S/LP). They currently provide services to the funded EI/ILP grantees in Dillingham, Kotzebue and Aleutian-Pribilof Islands. Many challenges face Alaska as it plans, develops and implements a universal newborn hearing screening program. Among these are access issues defined by geography, weather, provider, service and financing, and development of new systems for screening, diagnosis, referrals, follow-up and intervention in all but a few large communities. The coordination will be complex and often difficult due to the unique system of health care that has evolved to serve Alaska's ethnically diverse and geographically scattered population. VII. NEEDS ASSESSMENT It is difficult to fully assess the current status of infants and toddlers identified with hearing loss due to limited availability of data. Since January of 1998, no children have been seen at the statewide genetics clinics for consultation or evaluation of congenital hearing loss as the primary reason for referral. Data from the AEIHR program have not been collected in a manner which provides longitudinal historical information. 7.1 Early Intervention/Infant Learning Program Data Of the 33 children enrolled in the AEIHR program since July 1, 1999, 22 experience a confirmed hearing loss and 11 are "at risk" for hearing loss secondary to chronic otitis media and other conditions. The average age at which hearing loss was diagnosed was 14.2 months, the range being birth to 34 months of age. The average age at referral for those children identified with hearing loss was 15.3 months. Community-based ILPs referred 22 children to AEIHR, audiologists referred ten children, and one child was referred by a parent. Of the 22 children with hearing loss, eight were congenital problems, such as Down Syndrome, atresias, or other genetic syndromes. One child with congenital hearing loss, now living in Alaska, was identified at birth by Georgia's hearing screening program, and was directly referred to AEIHR by the parents. Of the 33 children enrolled in the program, 23 reside in the Anchorage and Matanuska-Susitna Boroughs alone. The remaining children are scattered among only a few southcentral and southeastern communities: Cordova, Seward, Kenai, Juneau and Sitka. What is disturbing about the enrollment pattern for AEIHR is the absence of hearing consultant services to children from the interior, eastern, western and northern regions of the state. Preliminary data from the newly implemented EI/ILP data system are presented in Table 3 and include only data from the 17 community-based EI/ILPs.
For the period July 1, 1999 to December 1, 1999, 1,785 children received early intervention services that included referral, screening, evaluation and/or enrollment. Of these, 557 had identified hearing concerns, had been referred for audiology services, or had received audiology or S/LP. Of all 1,785 children who received services, 1,148 were enrolled in EI/ILP and 321 of those enrolled were noted to have hearing concerns requiring audiology or S/LP services. Additionally, ten of the enrolled children were diagnosed with significant or progressive hearing loss, a Part C condition. Three of the ten children are from EI/ILP regions in which AEIHR is providing no services to any children. This suggests that infants and toddlers diagnosed with significant or progressive hearing loss may not be receiving optimal services from all community-based EI/ILPs and AEIHR at this time. It is also significant that hearing and related service needs are prevalent in 31 percent of all children who received any type of EI/ILP service and 37 percent of enrolled children. Approximately 1 percent of those enrolled during this period were diagnosed with significant or progressive hearing loss. Clearly, additional information is needed to fully evaluate needs and the potential use of these and alternate resources in communities across Alaska. To this end, data from the newly implemented statewide EI/ILP data system will be monitored semi-annually. 7.2 Barriers and Proposed Strategies Families with children who need follow-up for hearing screening failure require information, support and encouragement to continue on to diagnostics and, if necessary, intervention. They need to be connected to their medical home, which may often be a community-based, rather than city-based, provider. The potential exists for delayed or missed connections from the birth facility to the medical home, diagnostics, deaf education and community-based resources such as local EI/ILPs, family support, public health nursing, etc. Two very clear needs emerge from the available data and the status of newborn hearing screening in Alaska. First, a comprehensive universal newborn hearing screening program should be planned, devised and implemented under the guidance of an advisory board representative of statewide stakeholders and experts, including families and persons who experience hearing impairments. Defined workgroups will require the input from many additional stakeholders and experts to draft protocol for areas such as diagnostics, early intervention or data systems for tracking and follow-up. Second, since the level of voluntary hearing screening in Anchorage and Fairbanks should reach at least 40 percent of Alaska's births during the first year of this project, the challenge is to quickly develop interim strategies to ensure that all children who need rescreening, diagnostic audiology and/or early intervention services receive them by six months of age. Each child who fails screening at the birth facility must be tracked and followed to resolution or networked with all appropriate resources on a case-by-case basis. Presently, this may most easily occur in the SNSU in a manner similar to the protocol for following up positive results for newborn metabolic screening tests. Mechanisms and protocol need to be developed to inform and educate families about the significance of positive screens and the need for follow-up, and to obtain consent for sharing named screening results with the state universal newborn hearing screening project. The Project Coordinator would track progress, and ensure appropriate referrals to services and interventions in collaboration with the family, medical home, audiology, EI/ILP and other resources. (See Appendix 2, Proposed Alaska Universal Newborn Hearing Screening Program, for a schematic overview of the initiative.) Considerable groundwork has been laid in preparation for convening a universal newborn hearing screening advisory board in the spring of 2000. This effort has involved the support of many existing local, regional and state resources, including the parents who have joined CHIRP. Progress in this area has also been enhanced by the CSHCN Director's involvement with DSHPSWA, information from the Marion Downs Center and materials from other state programs. Existing resources for tracking and follow-up of persons who screen positive are both internal and external to the Title V agency. External resources include birth facilities, clinical providers, audiologists, pediatricians, ENTs, medical homes, families and family support agencies, the deaf communities and others, which will be further discussed in VIII. Collaboration and Coordination. Internal resources are considered to be those in MCFH, the SNSU and its grantee system. Included are the EI/ILP system and Part C of IDEA, genetics clinics, newborn metabolic screening, and the data management and epidemiology experience in the Section's Epidemiology Unit. Although congenital hearing loss is not a reportable birth defect in Alaska, the experience of the universal newborn hearing screening project may warrant its addition in the future. The EI/ILP system just implemented a new data system in July 1999. This comprehensive system should enhance the ability to track children identified with hearing loss who are receiving a wide variety of early intervention services. New data systems are being developed for specialty clinics and HCP-CSN and should be operational by July 2000. These systems are being designed in an integrated manner, which will provide useful and previously unavailable data for planning, implementing and evaluating all CSHCN programs. As an interim measure, options will be explored for adding data to the newborn metabolic screening data system for children who fail hearing screening. VIII. COLLABORATION AND COORDINATION Alaska's greatest assets lie in the existing coordination of its CSHCN programs and the collaborations and partnerships which are in place. Internal strengths of Alaska's Title V and SNSU programs include:
External assets which will enhance the development of universal newborn screening in Alaska include:
The very strong focus of the EI/ILP on collaborative, family-centered, community-based services will ensure the ongoing and active involvement of families in Alaska's universal newborn hearing screening program. In fact, all CSHCN programs seek ongoing input and feedback from families receiving services. Significant collaboration has been evident in the ongoing relationship between the Stone Soup Group (SSG), a parent-to-parent organization, and the Section of MCFH. Stone Soup Group holds as its mission: "...to sustain the health and well being of Alaskan children with special health care needs and their families. Through listening to the stories of families, we identify areas of need and work with communities to find solutions." For three years, SSG was funded by the Section's SSDI project to plan and develop a parent navigation model for families of CSHCN. During this period, Stone Soup Group also received a SPRANS grant to support a medical home project. Kathy Allely, the Executive Director of SSG has been the family representative on Alaska's Tri-Regional Team since its inception, four years ago. The organization has been involved with Block Grant and needs-assessment activities and Title V planning for a number of years. Additionally, Pam Muth, the Title V Director, is an ex officio member of the SSG board of directors. Stone Soup Group has received informal technical assistance with the development of data systems and is currently funded to implement parent navigation and training for Part C children and their families in at least five communities this fiscal year. The Section and its CSHCN programs also collaborate and coordinate activities with Children's Hospital at Providence (CHAP) which is part of the Providence Alaska Medical Center. The SNSU contracts with CHAP to provide neurodevelopmental pediatric services for the state's neurodevelopmental clinics as well as consultation and services to Part C children. The SNSU also rents space at CHAP for all Anchorage-based genetics and metabolic clinics. In 1996, the All Alaska Pediatric Partnership (AAPP) was formed. Its vision statement asserts, "The All Alaska Pediatric Partnership will become one of Alaska's leading collaborative organizations supporting the improvement and maintenance of the health of Alaska's children and families." Additional information about AAPP is available in Appendix 7. Workgroups of the AAPP are numerous and include areas such as hospital-based services, collaborative service development and subspecialty services. Alaska's Tri-Regional CSHCN Team is slated to present the 2000 state plan to the group and recommend the formation of a CSHCN subcommittee to execute the plan. The CSHCN subcommittee would add parent/family representation to the AAPP for the first time. Development of a universal newborn hearing screening program is included in the 2000 version of Alaska's Tri-Regional plan. Recommendations of the group include requiring UNHS to be a component of EPSDT screening, thereby promoting it as a statewide standard of care and assuring resources for ongoing care as needed. The Section of Maternal, Child and Family Health also has a long history of collaboration with the Section of Public Health Nursing. The sections have worked together for many years in the delivery of genetics and specialty clinics since public health centers host, staff and follow up on all clinics held at each respective health center. Partnering also occurs in the areas of women's health including family planning, cancer screening, HFAk and home visitation. Public health nurses represent a valuable, community-based resource for Alaska's universal newborn hearing screening program. They are available as referral resources for rescreening, diagnostics and intervention. IX. GOALS AND OBJECTIVES Alaska seeks funding to plan, develop and implement a sustainable universal newborn hearing screening program. Components of the intended program include (1) physiological screening prior to hospital discharge (2) coordination with the child's medical home, family support and existing state and community-based resources (3) audiological evaluation by three months of age, and (4) enrollment in appropriate early intervention by six months of age. Since Alaska's EI/ILP, genetics clinic and newborn metabolic screening program reside in SNSU, its universal newborn hearing screening program will complement the CSHCN services in existence. While all MCHB outcomes are important for CSHCN in Alaska, the universal newborn hearing screening program will concentrate on three from the "National Agenda for CSHCN: Measuring Success":
Early screening efforts will focus on ensuring that newborns who fail voluntary hearing screenings in birth facilities receive follow-up evaluations and/or diagnostics, and are referred to the EI/ILP community-based services. Family-centered services are the hallmark of Alaska's EI/ILP system. It is expected that parents and families are equal partners in the planning and delivery of their child's early intervention services which are largely home-based. By definition, these services are strengths-based, culturally competent and coordinated, and occur in natural environments. Periodic feedback is solicited from all families through surveys, focus groups and periodic monitoring reviews to gather information about how the EI/ILP system works for families. Insurance coverage information is routinely collected for all children enrolled in EI/ILP. The implementation of Alaska's Child Health Insurance Plan (CHIP) with Denali KidCare in March 1999 enrolled approximately 12,000 children through Medicaid expansion. The EI/ILP providers continue to be important sources of information and application packets for all families in their communities. In an effort to ensure that all families have coverage for services, a small amount of funding is being requested to cover diagnostic services for children without third-party payers who are not enrolled in the EI/ILP system. This will facilitate timely evaluation and diagnosis by three months of age and eliminate financial barriers. 9.1 Goal 1 9.1.1 Objectives 9.2 Goal 2 9.3 Goal 3 9.4 Goal 4 X. REQUIRED RESOURCES The SNSU will hire a UNHS Program Coordinator to oversee the planning, development and implementation of the statewide program, statewide plan and the facilitation of the advisory board. Clerical support of a 0.5 FTE Administrative Clerk III will be required to complement the work of the Coordinator, the advisory board and the evolving statewide program and plan. Funding for travel is required to convene the statewide advisory board in addition to allowing the coordinator to travel to communities to interact, educate and work with hospitals performing or considering performing voluntary hearing screening. Funds are also budgeted for an annual universal newborn hearing screening meeting as specified in the guidance for this initiative. Alaska has found teleconferencing to be an effective way to reduce meeting costs and improve productivity. As such, monies are required in each project year to support teleconferencing by the advisory board and its workgroups. Contractual services will be required to plan and develop an interim, and ultimately, a statewide, data system to track screening, diagnostics and referrals to intervention. Finally, a resource for diagnostic testing and travel is being requested to cover costs for children without third-party payers who are not receiving services from the early intervention system. This will allow families to avail themselves of timely diagnostic services which can be accessed more directly through the Program Coordinator and/or the child's medical home. All alternate resources, including use of Part C funds, will be exhausted before using these diagnostic funds. Additionally, resources will need to be identified to ensure that infants who require hearing aids have access to insurance and/or other coverage for purchasing appropriate devices. In Alaska, third party payers reimburse at very low rates for amplification devices and often do not cover computerized, high-tech aids. Options for changing third party coverage or providing "loaner" aids to infants through the AEIHR and HCP-CSN programs will need to be explored and developed. XI. PROJECT METHODOLOGY As discussed in X. Required Resources, a full-time Program Coordinator will be hired to oversee the planning, development and implementation of Alaska's universal newborn hearing screening program and all its components. This will include all operational aspects such as facilitating the advisory board, providing technical assistance to birth facilities, ensuring tracking and follow up of screening failures and referrals to appropriate and timely early intervention. A statewide advisory board will be formed and will include parents, members of the deaf community and numerous representatives from state and private agencies as detailed in III. Organizational Experience and Capacity. This committee will function in an advisory capacity and will provide input and collective expertise to plan, develop and implement Alaska's universal newborn hearing screening program. Additional workgroups will all be convened and will include other technical experts in areas such as audiology assessment and amplification, and early intervention. These workgroups will develop protocol and methodology for such specific components of the state program and plan. Successful collaboration and partnerships will be critical to the progress of Alaska's program. All involved MCFH staff members will ensure ongoing collaboration among the CSHCN programs and all partners including providers, consumers, agencies and others. Similarly, the MCFH staff will monitor the progress of project activities with regard to the goals and objectives discussed in IX. Goals and Objectives. XII. PLAN FOR EVALUATION A multifaceted approach, which includes process and outcome evaluation, will be used to evaluate this project. Evaluation activities will be the responsibility of the Program Coordinator and CSCHN Director and may require support from the EI/ILP programmer and other Epidemiology Unit staff members. Process evaluation and review will include (1) formation of the Advisory Board and its workgroups, (2) progress on development of a Universal Newborn Hearing Screening Plan for Alaska and (3) status of a system in the state which ensures the timely screening, diagnosis, referral and intervention services for Alaska's infants. Program impact will be monitored by outcomes additional to the identified goals and objectives in IX. Goals and Objectives and detailed in Attachment F. The number of births screened, completion of diagnostic audiology by three months of age for screening failures, and age at enrollment in early intervention will be tracked and monitored. The enrollment of infants diagnosed with hearing loss should increase significantly across the statewide EI/ILP system of grantees but should increase most dramatically for the AEIHR consultant program. The "at risk" portion of their current caseload would likely be replaced by children with documented hearing loss. Additional financial and staff resources might be required in the future for all EI/ILPs statewide. The demand for genetics evaluations will also increase substantially as genetics clinics are routinely used for newborns identified with congenital hearing loss. Improved identification and enrollment of Part C children prior to 12 months of age will also occur as a result of a comprehensive universal newborn hearing screening program. Early identification and early intervention for all Alaskan children and for disabilities beyond congenital hearing loss is likely to be enhanced by the implementation of a comprehensive, collaborative universal newborn hearing screening program in Alaska. XIII. REFERENCES 1. Crondahl, Judy. 1998. Alaska Bureau of Vital Statistics 1997 Annual Report. Juneau: Department of Health and Social Services, Division of Public Health. 2. American Academy of Pediatrics Task Force on Newborn and Infant Hearing. 1999. Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics 103 (2): 527-529. 3. U.S. Public Law. Early Hearing Detection and Intervention Act of 1998. 4. Yoshinaga-Itano, Christine, Allison L. Sedey, Diane K. Coulter, and Albert L. Mehl. 1998. Language of Early- and Later-Identified Children with Hearing Loss. Pediatrics 102(5): 1161-1171. 5. National Center for Hearing Assessment and Management. Universal Newborn Hearing Screening Fact Sheet. Logan: Utah State University. |
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