Alaska CDC EHDI Grant (2001)

GRANT ABSTRACT

EARLY HEARING DETECTION AND INTERVENTION (EHDI) TRACKING, RESEARCH AND INTEGRATION PROJECT ABSTRACT

Project Number. CFDA #93.283
Project Director: Pam Muth Phone (907) 269-3410
Organization: Alaska Department of Health and Social Services,
Division of Public Health,
Section of Maternal, Child, and Family Health
Address: 3601 C St, Ste. 934, PO Box 240249,
Anchorage, AK 99524-0249
Contact: Karen Martinek Ph. (907) 269-3410; karen.martinek@health.state.ak.us

Protect Title: Alaska's l Tracking and Surveillance Project 8/01/01- 7M/04

ORGANIZATIONAL SETTING: The Universal Newborn Hearing Screening/Early Hearing Detection and Intervention (UNHS/EHDI) Program is located in the Special Needs Services Unit (SNSU) in the Section of Maternal, Child and Family Health (MCFH), Alaska's Title V agency. The SNSU administers all Children with Special Health Care Needs (CSHCN) programs in the state, under the CSHCN Director.

PURPOSE: The State of Alaska seeks Level I funding to develop a sustainable centralized EHDI tracking and surveillance system designed to be integrated with other screening and surveillance systems. Additionally, the project seeks to improve outcomes for newborns by ensuring (1) physiological heating 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.

GOALS AND OBJECTIVES:

Goal 1: Develop and implement voluntary interim reporting strategies for EHDI that include screening, diagnostics, and referrals to intervention and related services. Objectives include: identifying current tracking strategies used by screening hospitals; developing strategies for interim tracking/surveillance; developing consent/information exchange procedures; implementing/evaluating interim reporting/tracking until EHDI tracking/surveillance fully system implemented.

Goal 2: Develop an EHDI tracking and surveillance system that builds upon the EBC/NBIES integration project. Objectives include: implementing the electronic birth certificate (EBC) with newborn metabolic screening (NBMS) and EHDI components; defining scope of work; developing, testing & implementing integrated prototype tracking/surveillance system, including CDC data exports & enhancements; and publishing a report detailing tracking system, definitions, methodology, collaboration, and status of identified goals, objectives and child outcomes.

Goal 3. Assure. timely and appropriate screening, diagnosis and intervention for infants identified with hearing loss. Objectives include: determining the number of hospitals participating in voluntary reporting; establishing baseline and ongoing data for # / % screened, missed, refused, referred to/received timely diagnostic and early intervention services, confirmed hearing loss (HL), age at diagnosis; false positive, identification of older infants with HL; and implementing a family satisfaction survey.

METHODOLOGY AND EVALUATION: Alaska's EHDI Tracking and Surveillance project will assure minimal loss to follow-up by monitoring the status and progress of infants through the three components of the EHDI program (screening, detection, and intervention). This system will be built upon the EBC project, which will collect NBMS, minimal hearing screening and birth defects data through a collaborative project with the Bureau of Vital Statistics (BVS). Program impact will be measured by the achievement of the identified goals and objectives. Child outcomes will also include earlier identification and intervention for HL, decrease in preventable language delays, improved school performance and reduction in costs associated with late identification of HL.

KEY WORDS: Early Hearing Detection & Intervention (EHDI), UNHS, early intervention, CSHCN, hearing loss, tracking, newborn metabolic screening (NBMS), electronic birth certificate (EBC)

GRANT NARRATIVE

I. INTRODUCTION

Background

Alaska is the largest of the 50 states, contains approximately 16 percent of the country's landmass and encompasses roughly 586,412 square miles of land. The estimated 1999 population was 622,000, or slightly more than one person per square mile'. Because of its size, Alaska has widely diverse geographic, climatic and demographic characteristics, all of which affect public health.

Unique climatic conditions affect Alaska's people, with temperature ranges from as high as 100°F to lows that approach -80°F. Alaska also experiences extremes in precipitation, with some areas of the state receiving up to 200 inches of precipitation annually while other areas receive as little as 12 inches. Not surprisingly, Alaska has few roads and 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; Juneau, the state's capital and third largest city, is accessible only by plane or boat. The vast wilderness of Alaska is dotted with isolated villages, some with fewer than a dozen people, which may lack basic conveniences like running water and sewer, and similarly remain accessible only by small plane or boat. In many cases, travel by air is the only feasible mode of transportation due to the distances involved, adverse weather conditions, and lack of roads. Intrastate air travel in Alaska is expensive and often involves greater distances than interstate travel in the lower 48.

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. 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 (IHS) and the individual tribes, the State of Alaska, and private entities provide health care in many areas of Alaska.

Population/Demographics

The 1999 estimated Alaskan population was 622,000 persons, with 323,687 (52%) males and 298,313 (48%) females. Demographically, whites make up 73.7 percent of the total population; Alaska Natives/Native Americans, 16.8 percent; African Americans 4.4%; Asian/Pacific Islanders, 4.9%; and Hispanic origin, 4.7%. Residents of the Anchorage census area comprised 41.7 percent of the state's population during 1999. About 77 percent of Alaska's population were concentrated in five census areas: Anchorage, Fairbanks, Juneau, Kenai and Matanuska Susitna.

There were 9,959 Alaska resident live births in 1999 and 9,975 occurring births. Of the 9,975 occurant births, 5,307 (53%) were delivered in the Anchorage Borough (FN: 1,2).

II. UNDERSTANDING OF THE PROBLEM AND CURRENT STATUS

Purpose

The State of Alaska seeks Level I funding to develop a sustainable centralized Early Hearing Detection and Intervention (EHDI) tracking and surveillance system designed to be integrated with other screening and surveillance systems. Additionally, the project seeks to improve outcomes for newborns by ensuring (I) 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. Throughout this document, Alaska's current program will be referred to as the Universal Newborn Hearing Screening/Early Hearing Detection and Intervention (UNHS/EHDI) Program.

Challenges and Barriers

Approximately 10,000 children are born each year in Alaska. Permanent hearing loss (HL) is among the most prevalent of congenital disorders, occurring in three per 1,000 live births (FN: 2-3). By these estimates, approximately 30 newborns would be identified each year in Alaska if all resident births were screened. Currently, about 60% of the state's newborns are delivered in facilities with voluntary universal newborn hearing screening programs. At a 60% screening rate, it is anticipated that approximately 18 children will be identified with congenital HL annually, with additional newborns requiring follow-up and tracking for missed or failed screening, audiological evaluation and referrals to intervention. Of the 1626 children enrolled in Alaska's Early Intervention/Infant Learning Program (EI/ILP) during SFY00, 14 were diagnosed with HL; 355 were identified with hearing concerns; and 761 received hearing and/or speech language services. An overview of UNHS activities from 1998 to 2000 is presented in Table 1.

[TABLE 1]

Due to the inability to collect and track voluntary UNHS/EHDI data, a significant gap appears to exist after newborns are screened/rescreened by some participating birth facilities. Facilities such as Alaska Regional in Anchorage and Fairbanks Memorial refer babies who fail screening only to their physicians. It is then the physician's responsibility to ensure that the baby receives timely audiological and other medical evaluation, and, where necessary, early intervention services. It appears that babies born at both of these facilities who fail the newborn hearing screen may not receive referrals for diagnostics or early intervention. Audiologists in both areas report that they have not received a single referral for a newborn from these facilities in several years. Given their birth rates, each of these facilities should have referred several babies for follow-up audiological evaluation. Facilities that are experiencing greater success in connecting babies to further evaluation and services are those such as Providence Hospital in Anchorage where babies who fail screening are not only refereed to their physicians, but also directly to an audiologist. It appears that the potential for successful follow-up is maximized if referrals are made to multiple providers and resources- i.e. pediatricians, audiologists, family support, public health nurses (PHNs), etc. Children born in Anchorage or Fairbanks often reside in other areas of the state that may be without local resources for routine or high-risk perinatal services. Children from these outlying areas who need follow-up may be problematic and challenging given the current system.

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/ILP, family support, public health nursing, etc. Significant challenges include 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. Assuring that these newborns receive timely and appropriate diagnostic and intervention services will require the development of a centralized EI-DI tracking system.

Rationale

Newborn HL is one of the most common congenital abnormalities, which if undetected will impair speech, language and cognitive development (FN: 3,4). It is more prevalent than all the inborn metabolic disorders for which Alaska tests, including hypothyroidism, phenylketonuria, galactosemia, maple syrup urine disease, biotinidase deficiency and congenital adrenal hyperplasia. Over 50 percent of newborns with hearing impairments go undetected until the age of two or three (FN: 5). Recent research has demonstrated that children identified with HL by six months of age possess significantly better language skills than those identified after silt months of age. For those with normal cognitive abilities, language advantage is evident for all test ages, methods of communication, severity of HL, and socio-economic status. The language advantage also appears to be independent of gender, minority status and the presence/absence of additional disabilities (FN: 6). Universal newborn hearing screening programs which screen all infants reduce the age at which children with HL are identified, improve school performance, reduce educational costs and increase the likelihood that the children who experience congenital HL will be productive members of their communities.

Target Population and Current Status of UNHS

The target population for this initiative and the state's UNHS/EHDI project ultimately includes all resident births in Alaska. This project will enhance the four-year UNHS project funded in 2000 which targets planning, development, and implementation of LJNHS components to ensure screening for 50% of Alaska's resident births, diagnosis by three months, coordination of services, and enrollment in early intervention by six months of age, thereby improving outcomes for children identified with congenital hearing loss. Currently, 23 hospitals in Alaska deliver newborns; 7 of these do voluntary newborn hearing screening before discharge. It is anticipated that one additional hospital will implement voluntary hearing screening this year.

Alaska's UNHS/EHDI program has taken several important steps during its first year. Significant achievements include: completing a comprehensive needs assessment; establishing and convening an advisory board and five taskforces - screening, diagnostics, early intervention, legislation, and data and evaluation; launching a pilot tracking project with the state's largest hospital; developing a mini database in MS Access to collect data from the pilot tracking project; adding EHDI fields to the state's Electronic Birth Certificate (EBC) project; and promoting the State UNHS/EHDI initiative through education and outreach. Additionally, HB 173, which mandated UNHS in 90% of Alaska's births by 2003, was introduced, but failed to pass due to budgetary concerns during the 2001 Legislative session. Collaboration with various stakeholders, including the sponsoring legislator, Reggie Joule, the Advisory board, the Governor's Council on Disability and Special Education (GCDSE), advocacy groups and public health officials will continue since the Bill will be reintroduced during the 2002 Session.

Several very clear needs emerge regarding the status of newborn hearing screening in Alaska. Development of a comprehensive universal newborn hearing screening program must continue under the guidance of an Advisory Board representative of statewide stakeholders and experts, including families and persons who experience hearing impairments. Second, since the level of voluntary hearing screening in Alaska should reach at least 60 percent of Alaska's births during 2001, 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 within recommended time frames, while a long term tracking system is developed. 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. Mechanisms and protocols need to be developed to inform and educate families about the significance of positive screens, the need for follow-up, and to obtain consent for sharing named screening results with the UNHS/EHDI project. With funding for a sustainable tracking and surveillance system, Alaska will develop a coordinated, integrated system for EHDI that insures screening, diagnosis and intervention that are both timely and appropriate.

Current EHDI Tracking and Linkages

Alaska's UNHS/EHDI Program has been working closely with the two largest hospitals in the state to develop a pilot tracking project that will ensure that all babies who are either missed or referred from screening receive appropriate follow-up. The UNHS/EHDI Coordinator is also working with audiologists and early interventionists to ensure that linkages occur from screening to diagnostics to intervention. The Coordinator has developed a database to track voluntary data provided to the State UNHS/EHDI program by hospitals and audiologists. (See Appendix I for sample forms).

Diagnostic and Intervention Resources

Newborn hearing screening services are available at the hospitals noted in Table 1. Additional resources for diagnostic and intervention services are included in Appendix l and described below. Resources for rescreening and diagnostic audiology vary by community. Diagnostic audiology services are available in only six communities in Alaska, most of which are urban or "hub" communities in rural and remote areas. Hub communities are those centers of commerce where rural and remote village residents shop, bank and seek professional and medical services. Diagnostic audiologists reside in five of the six communities with itinerant services to Kotzebue available approximately six times each year. Screening audiology services are available in other communities but the distribution of diagnostic services is more critical to the success of Alaska's UNHS/EHDI efforts.

The availability of medical specialty services also 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 seven hub communities. In all other communities, newborns requiring referrals, service coordination, or evaluations from pediatricians or otolaryngologists face issues of access to timely and appropriate services. Additionally, approximately 22 days of itinerant genetics are available in eight hub communities for genetic evaluation and counseling of families with infants identified with congenital HL.

A wide range of early intervention services, including Part C, are also available in Alaska Federal and state laws set the direction for comprehensive, collaborative, community-based, culturally competent, family-centered services that are designed to meet the developmental needs of the child within a family context. Seventeen regional EI/ILP grantees (nonprofit agencies) deliver these comprehensive home/community-based services to eligible infants and toddlers and their families. The programs vary widely by staff and region size and range from a regional native corporation, with three itinerant teachers that covers 56 villages, 235,000 square miles, and an estimated population of 13,004 people in the interior, to an urban program in Anchorage, a community of 260,283, that serves 30% of all enrolled children in Alaska and has a staff of 30. (See Appendix 3 for EI/ILP Service Regions and Grantees, 2000.)

Two statewide, specialized EI/ILPs also serve children who experience low-incidence disabilities and are enrolled in their community-based EI/ILPs. The Vision Impairment Services for Infants and Toddlers (VISIT) and the AEIHR Programs are located in Anchorage and provide itinerant, consultative services to EI/ILPs and families throughout Alaska.

Integration

Although congenital HL is not a reportable birth defect in Alaska, the experience of the UNHS/EHDI project may warrant its addition in the future. The EI/ILP system implemented a new data system in July 1999. This comprehensive system should enhance the ability to track children identified with HL who are receiving early intervention services. New data systems have also been developed for specialty clinics and Health Care Program for Children with Special Needs (HCP-CSN). These systems were designed with capacity for integration, which will provide useful and previously unavailable data for planning, implementing and evaluating all Children with Special Health Care Needs (CSHCN) programs.

The Section of Maternal, Child, and Family Health (MCFH) has partnered with the Alas Bureau of Vital Statistics (BVS) to add newborn metabolic screening (NBMS) and hearing screening data to the electronic birth certificate (EBC). The BVS contractor, Vital Vision, has developed a prototype system. It is anticipated that the system will soon undergo testing and the system will be deployed to hospitals throughout Alaska during the next year. At the present time we expect to collect date of hearing screening and result (pass, fail, refer, refused, missed). This data will be sent to MCFH on a weekly (at minim) schedule.

III. GOALS AND OBJECTVIES

With support for an EHDI tracking and surveillance system, Alaska will have the resources to collaboratively plan, develop and implement a comprehensive newborn hearing screening program which ensures that 50 percent of all resident births are screened at birth or shortly thereafter, diagnosed by three months of age, and have appropriate tracking, coordinated follow-up and intervention by six months of age. As a result, the average age of identification should be significantly reduced, the number of children identified with congenital or late onset HL receiving EI/ILP services should be increased, the number of Part C children (since deafness is a

Part C defining condition in Alaska) identified and enrolled in EI/ILP by 6 months of age will increase, and comprehensive, collaborative systems will be in place to expand and enhance all components of Alaska's UNHS/EHDI program.

Goal 1: Develop and implement voluntary interim reporting strategies for EHDI that track screening, diagnostic evaluations, and referrals to early intervention and related services.

Objectives:

1.1 Identify current strategies used by screening hospitals to track information about newborns who are screened, missed, waived, re-screened, referred to audiologists, MDs, and early intervention by 10/01 (Year 1).

1.2 Convene Data and Evaluation Task Force to review current practices by 11/01 (Year 1).

1.3 Explore and develop strategies for interim tracking and surveillance such as addition of minimal EHDI data to the mandatory weekly birth information submitted to the NBMS program by 2/02 (Year 1).

1.4 Develop consent and information exchange procedures for named tracking/follow up of infants who fail/miss screening, or require diagnostic and/or EI/LP services by 3/02 (Year 1).

1.5 Implement interim reporting and follow-up tracking by 5/02 (Year 1).

1.6 Evaluate and revise reporting and follow-up tracking until EBC/NBMS integration and EHDI tracking and surveillance system are fully implemented by 9/02.

Goal 2: Develop an EHDI tracking and surveillance system that bonds upon the EBC/NBMS integration project.

Objectives: 2.1 Implement EBC with NBMS and hearing screening components in partnership with BVS (Year 1).

2.2 Convene design and development team for EDHI data integration project to identify key system integration and tracking system features (Year 1).

2.3 Develop task order (scope of work) for system development (Year 1).

2.4 Develop prototype tracking and surveillance system that includes electronic transmission from EBC to EHDI system and linkages with other MCFH data systems e.g. EI/ILP, Specialty and Genetics Clinics, and Alaska Birth Defects Registry (ABDR) (Year 1).

2.5 Test prototype model to identify and eliminate system bugs (Year 2).

2.6 Implement EHDI tracking and surveillance system (Year 2).

2.7 Develop and implement data exports for CDC EHDI reporting (Year 3).

2.8 Identify useful reports and system enhancements for development (Year 3).

2.9 Prepare and publish a report describing the tracking system, definitions, methodology, collaborative relationships, data collection and progress with

Objectives 3.1-3.9, child outcomes, findings, and recommendations across sites (Year 3)

Goal 3. Assure timely.- and appropriate screening, diagnosis and intervention for infants identified with hearing loss.

Objectives:

3.1 Determine the number of hospitals and birth centers participating in voluntary reporting to the UNHS/EHDI program by 1/02 (Year 1).

3.2 Establish baseline data for number of infants screened and referred to/received diagnostic services, number with confirmed HI. and number referred to/received early intervention services by 2/02 (Year 1).

3.3 Determine the average age of diagnosed of HL in all infants by 2/02 anti semi-annually ongoing.

3.4 Determine, by facility, the % of newborns screened before discharge or missed, refused screening, % false positive, % referred for/received diagnostic evaluation, anti % with confirmed HL by 8/02 and quarterly (Year 2 / ongoing).

3.5 Determine number and percentage of infants referred to and receiving EI/ILP services by six months of age by 8/02 and quarterly (Year 2 / ongoing).

3.6 Explore options for screening/identification of older infants with HL by 9/02 (Year 2-3).

3.7 Implement enhanced child find and screening activities in the EI/ILP system to identify infants 0-3 with late onset HL by 12/02 (Year 2-3).

3.8 Determine the completeness of reporting for all participating hospitals/birth facilities by 2/03 and quarterly (Year 2-3 / ongoing).

3.9 Determine parent/family satisfaction with screening, tracking and follow-up services received by 3/03 (Year 3).

IV. DESCRIPTION OF PROGRAM METHODOLOGY

MCFH will establish and implement an EHDI Tracking and Surveillance system to ensure timely and appropriate follow-up by monitoring the status and progress of infants through the three EHDI components - screening, detection, and intervention. MCFH has already established methods for collecting newborn hearing screening and birth defects data by partnering with BVS to capture both on the EBC. Data from the EBC will then be used to populate the EHDI database. Through this grant MCFH will develop a data system that is electronically updated at regular intervals (at least weekly) from the EBC. From the EBC, MCFH will be able to gather routine demographic data as well as the population-based hearing screening information (date of screen, screening outcome e.g. pass, fail, refused, referred).

MCFH envisions a centralized web-based EHDI data system that is capable of collecting standardized EHDI data (including the type of HL and type of intervention services) from multiple sources, e.g. birthing hospitals, diagnostic centers, audiologists, physician, intervention programs. Alaska will use the UNHS/EHDI Data and Evaluation work group to identify what EHDI data should be collected from each of the types of sources specified above. The tracking and surveillance system will have reporting components that will ensure that tracking and surveillance data collected from multiple sources will be used to minimize loss to follow-up. Initially, efforts will focus on ensuring that those children that do not pass, miss, or refuse the hearing screening at birth have been appropriately referred for further evaluation. MCFH along with the UNHS/EHDI Advisory Group's Data and Evaluation committee will identify areas of potential loss to follow-up or lost intervention opportunities and will work collaboratively with service providers and facilities to close system gaps.

MCFH will work with EI/ILP providers as well as hearing professionals and Part B partners to identify and collect standardized data on infants/children with late onset or progressive hearing loss. Along with the development of the EHDI data system, MCFH will explore adding HL as a reportable birth defect. Currently, the EI/ILP data system can be used to provide data on children with a HL or concern that have been referred, screened, or enrolled in EI/ILP services. As MCFH collects data on children who have been screened for HL at birth, a determination can be made to ensure that children are not missing early HL loss identification and subsequent referrals for early intervention.

At a minimum, MCFH will develop a EHDI database that includes collecting the information necessary to obtain outcome data such as: percent of infants screened, referred, evaluated, and enrolled in intervention programs; unexpected clusters of infants with HL in particular regions at particular times; unexpected differences in measure of EHDI screening performance between participating birthing hospitals; false positive rates; and loss to follow-up rates. In addition to the outcome data above, MCFH will build the capacity into the EHDI database to report to CDC the following data: live births, screens, referrals for audiologic evaluation, audiologic evaluations by 3 months of age, children with permanent HL ages 0-7 years, laterality of HL, type and degree of HL, average/median age in months at identification of HL, and number of infants receiving intervention by 6 months of age. Currently, MCFH has worked with a number of providers to gather some of this data through paper and pencil methods. The web-based EHDI system along with the planned links to EUILP, ABDR, and other MCFH data systems will allow for more timely collection and use of data.

MCFH will explore and develop strategies to document concerns from parents and professionals about the EHDI process. Already, MCFH is working on surveying parents of children enrolled in EI/ILP services to gather their feedback about the quality of their experience. If necessary, special surveys can be implemented to gather further feedback about concerns for parents who have children with HL. Semi annual EI/ILP grantee meetings are convened to provide education and training, share information and elicit feedback on the operation of the statewide Program. Those forums will provide an opportunity to gather feedback specifically about the concerns and challenges of delivering early intervention services to children with HL in Alaska. Further, the UNHS/EHDI Advisory Group represents a diverse population of professionals, consumers, and advocates who will provide feedback to MCFH about the EHDI Tracking and Surveillance Project.

MCFH is uniquely positioned to design an EHDI Tracking and Surveillance system which can be integrated with other screening and tracking programs that identify children with special health care needs such as the NBMS, EI/ILP, ABDR, Alaska Fetal Alcohol Syndrome Surveillance (FAS) programs. With the exception of ABDR and FAS Surveillance, all of these programs are housed in the MCFH Special Needs Services Unit (SNSU) with the UNHS/EHDI project. Furthermore, MCFH has made a considerable effort during the past several years to develop new databases for most SNSU programs. Simultaneously, data matching programs have been developed that allow the comparing and merging of databases. Finally, all of the MCFH data management staff is housed in the Data Management Unit that makes necessary infrastructure for this project readily available. The Data Management Unit Manager has more than 15 years experience working with public health data systems and also has considerable knowledge about not only the data systems housed at MCFH but also a variety of other systems such as vital records, public health nursing, and medical assistance.

V. COLLABORATIVE EFFORTS

As discussed in IV. DESCRIPTION OF PROGRAM METHODOLOGY, MCFH 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, including the UNHS/EHDI Program. Since NBMS, Genetics, UNHS/EHDI, and EI/ILP all reside in the SNSU and are supervised directly by Karen Martinek, the highest level collaboration among these programs will occur.

Additionally, the UNHS/EHDI initiative also requires building upon existing relationships and continuing the development of some new ones. The statewide UNHS/EHDI Advisory Board includes representatives from screening hospitals, IHS, the military, audiologists, pediatricians, otolaryngologists, speech/language pathologists, EI/ILP, other state agencies, such as PHN and advocacy groups, CSHCN State staff, state and local education agencies, and families as well as persons who experience hearing loss. (See Appendix 4 for Advisory Board and Work Group members). The Section also has a long history of collaboration with the Section of Public Health Nursing in the delivery of genetics and specialty clinics and many other programs. Public health nurses represent a valuable, community-based resource for Alaska's UNHS/EHDI program as referral resources for rescreening, diagnostics, family support, and intervention. Additional information regarding collaboration with the BVS on the EBC/NBMS project is contained in IV DESCRIPTION OF PROGAM METHODOLOGY

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.

VI. EVALUATION PLAN

Evaluation of Alaska's UNHS/EHDI Program and the EHDI Tracking and Surveillance project funded by this initiative will include both process and outcome evaluation measures. Table 3 lists evaluation activities and plan by each proposed goal and objective to ensure that the project addresses the components of screening, detection and intervention in an integrated system. Additionally, outcomes for infants and families are expected to include a reduction in the mean age of identification of HL, increased numbers of infants with HL receiving timely and appropriate diagnostic services, increased numbers of children with HL receiving timely services from EI/ILP, increased numbers of Part C children enrolled in EI/ILP by 6 months of age, and improved identification of young children with late onset HL. As a result, preventable delays in language acquisition will be reduced. school performance will be improved, and the lifelong education and societal costs of late identified HL will be reduced.

VII. STAFFING AND MANAGEMENT SYSTEM

Alaska's UNHS/EHDI Program is 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 is located in the Special Needs Services Unit (SNSU), which administers all Title V CSHCN programs in the state. Among the SNSU programs are the EI/ILP, including Part C of IDEA; NBMS; 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) CSHCN data integration project was also located in SNSU. Other programs within the Section, but outside SNSU, include the ABDR, and the Alaska FAS Surveillance project. (See Appendix S for DHSS, DPH and MCFH 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 that 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); ABDR; Domestic Violence Project; Healthy Families of Alaska (HFAk); and FAS Surveillance Project. The Section also contains an Epidemiology Unit which provides support for epidemiological activities, and a Data Management Unit (DMU), which oversees data management and integration, and statistical analyses for 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.

Existing staff resources available to this initiative include Karen Martinek, the CSHCN Director/SNSU Manager, Jill Holdren, the UNHS/EHDI Program Coordinator, and Diane Ingle, Manager of the Data Management Unit.

Grant funding will be used to employ a O.5 FTE EHDI Tracking/Surveillance Coordinator to oversee the project, a O.5 FTE Administrative Clerk to provide clerical support to the project and 0.25 of an Analyst/Programmer in Years 2 and 3 to perform data analysis and assist with project evaluation.

VIII. ORGANIZATIONAL STRUCTURE AND FACILITIES

The current UNHS project is based in the Section of MCFH, Alaska's Title V agency as described in VI. STAFFING AND MANAGEMENT SYSTEM. The EHDI Tracking and Surveillance project will also be located in the Special Needs Services Unit (SNSU), and will interface closely with the current UNHS/EHDI program. The entire MCFH staff shares a suite of furnished offices that will include space for additional project personnel to be hired for this project. The existing staff will require no funding from this grant for salary, equipment or facilities.

Alaska does not believe that Year One activities put any human subjects at risk. The proposed activities under the cooperative agreement are voluntary. Consent policies provide for human subjects safeguards. If during Year One or in subsequent years of the cooperative agreement subjects' review is required, applications will be submitted to an appropriate Institutional Review Board. The project director will keep CDC informed of any activities that may rewire human subjects review.

X REFERENCES

1. Williams, Gregory, J., May 2000. Alaska Population Overview -1999 Estimates. Juneau: Alaska Department of Labor & Workplace Development, Research and Analysis Section, Demographics Unit

2. Alaska Bureau of Vital Statistics - Preliminary Birth Data for 1999 by Census Area Juneau, Department of Health & Social Services, Division of Public Health. Retrieved June 6, 2001 from the World Wide Web: http://www.hss.state.ak.us/dph/bvs/bvs-home.htm

3. American Academy of Pediatrics Task Force on Newborn and Infant Hearing. 1999. Newborn and Infant Hearing Loss: Detection and Intervention. Pediatrics 103 (2): 527529.

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 1025):1161-1171.

5. National Center for Hearing Assessment and Management Universal Newborn Hearing Screening Fact Sheet. Logan: Utah State University