PROJECT NARRATIVE

CHAPTER 1. PURPOSE OF THE PROJECT

The Hawaii Department of Health, Children with Special Health Needs Branch (CSHNB) is requesting funds for four years to fully implement and refine the statewide system of services for infants and young children with hearing loss and their families. CSHNB will be responsible for providing the overall administrative direction and coordination for the Hawaii Early Childhood Hearing Detection and Intervention (HECHDI) Project.

1.1 Problem and magnitude

The Hawaii Newborn Hearing Screening Program (NHSP) is supported by a 1990 law which mandates that the Department of Health has the responsibility to develop methodology to establish, implement, and evaluate a statewide program and develop guidelines for screening, identification, diagnosis, and monitoring of infants and children to age 3 years with hearing impairment (see Appendix F). Screening began in two Honolulu hospitals in 1992, and by the end of 1999, all birthing facilities in Hawaii were providing newborn hearing screening. Newborn hearing screening is now standard medical practice for newborn care in Hawaii. Data for infants born in hospitals during the first 6 months of 1999 show that approximately 98% were screened. Further examination of data (1998), however, indicates concerns in the following areas of rescreening, assessment, and early intervention services:

• The average statewide rate of infants who fail initial screening and subsequently are referred for rescreening is approximately 8.0% (with a range of 2.3-15.8% for individual hospitals). The false positive rate for screening is high at approximately 92.2%.
• Approximately 12.9% of children who did not pass initial hearing screening did not return for rescreening.
• Of infants referred for comprehensive audiological assessment, 23.8% refused assessment, and 4.5% were lost to followup.
• Of infants confirmed with sensorineural hearing loss, 27.8% families refused early intervention services. Only 63.2% of children with mild to moderate hearing loss and 37.5% children with severe to profound hearing loss received appropriate early intervention services.

1.2 Proposed intervention/demonstration and rationale

The above measures indicate problems in the service delivery system, and point to a need to improve various components of the system. Therefore, the HECHDI Project proposes to address system improvement in all areas from screening to assessment to early intervention.

The following table identifies Hawaii's proposed plan regarding further developing or establishing program components for universal newborn hearing screening and infant audiological assessment:

The HECHDI Project also proposes refinement in family support and early intervention services to meet the needs of young children with hearing loss and their families.

1.3 Anticipated benefit

Hawaii will have an improved universal newborn hearing screening program, which will increase screening prior to hospital discharge with reduced rates of false-positive screens, improve coordination of services with the child's medical home and family support, improve rates of audiologic evaluation by age three months, improve the transition/referral process from assessment to early intervention services, improve rates of infants with hearing loss enrolled in early intervention services by age six months, and improve early intervention services to meet the needs of infants/children with hearing impairment and their families.. These relate to the Universal Newborn Hearing Screening initiative and Healthy People 2000 and 2010 objectives.

The program will contribute to Title V measures for children with special health care needs (CSHCN) - early screening for special health care needs; promotion of comprehensive care within a medical home; family participation in decision-making at all levels; and organization of services in ways that CSHCN and their families can use them easily.

CHAPTER 2. ORGANIZATIONAL EXPERIENCE AND CAPACITY

The Newborn Hearing Screening Program (NHSP) is a program in the Early Intervention Section (EIS) of the Children with Special Health Needs Branch (CSHNB) of the Hawaii Department of Health. The experience and the capacity of CSHNB/EIS/NHSP to coordinate and support the planning, implementation, and evaluation of the HECHDI Project is evidenced by the following accomplishments:

(1) In 1990, legislation supporting universal newborn hearing screening in Hawaii was introduced and passed, with the support of the Zero-to-Three Hawaii Project (now EIS), American Academy of Pediatrics Hawaii Chapter, and the Hawaii Speech-Language-Hearing Association. In May 1990, Governor Waihee signed Act 85 (HRS §321-362) which mandated that the Department of Health has the responsibility to: develop methodology to establish, implement, and evaluate a statewide program for early identification and intervention for hearing impairment in infants; develop guidelines for screening, identification, diagnosis, and monitoring of infants with hearing impairment and infants at risk for delayed onset of hearing impairment; and develop a plan for the collection of data and evaluation of the program. (2) With state funding, the Department of Health created the NHSP, which began working with hospitals providing perinatal services to implement screening. In 1992, when newborn hearing screening began in two major birthing facilities in Honolulu, screening was available to 19% of infants born in Hawaii. During 1999, newborn hearing screening expanded to the last three birthing facilities in Hawaii, so that screening is now available to all infants born in birthing facilities in Hawaii. NHSP has established screening procedures; linking with the infants' medical home, family support, and early intervention; procedures for audiologic assessment of infants suspected of hearing loss; data and tracking system; and provided education about newborn hearing screening, diagnosis and early intervention.

(3) CSHNB is also a leader in the area of newborn metabolic screening. Since 1987, the CSHNB Newborn Metabolic Screening Program (NBMSP) has assured that infants were screened for PKU and congenital hypothyroidism. In 1996 legislation was passed that made it possible for NBMSP to collect fees and contract with a centralized regional laboratory. In 1997, newborn metabolic screening expanded from two to seven disorders. NBMSP has also made major improvements in the tracking and follow up of infants and families to assure satisfactory testing and appropriate and timely treatment. In 1997 and 1998, respectively, 99.8% and 99.7% of the infants born in Hawaii were screened, and 100% of infants with confirmed diagnoses received appropriate followup and treatment.

CHAPTER 3. ADMINISTRATION AND ORGANIZATION

3.1 Organizational structure

The Hawaii Department of Health's Family Health Services Division (FHSD), the state agency responsible for the state Title V Maternal and Child Health Block Grant, has 3 branches:

The Maternal and Child Health Branch includes the Healthy Start home visiting program for the prevention of child abuse and neglect, which is part of the early intervention service system. The Children with Special Health Needs Branch (CSHNB) includes the State Genetics Coordinator; the Early Intervention Section (state lead agency for Part C of IDEA) which has overall responsibility for both early intervention services and the Newborn Hearing Screening Program; and the Children with Special Health Needs Community Section which includes the Newborn Metabolic Screening Program. The third branch is Women, Infants, and Children (WIC) Services Branch. Organization charts are shown in Appendix A.

Public health nurses who provide care coordination for young children as part of the early intervention system are located in the Public Health Nursing Branch of the Community Health Division. Both the Community Health Division and the Family Health Services Division are located in the Health Resources Administration.

The HECHDI Project will be located in the Early Intervention Section, and encompasses the Newborn Hearing Screening Program. The organizational structure for the Project is:

3.2 Administration

The Hawaii Early Childhood Hearing Detection and Intervention (HECHDI) Project will be under the direction of the Children with Special Health Needs Branch (CSHNB) Chief and the CSHNB Early Intervention Section Supervisor, who will work collaboratively but focus on different areas of the Project. CSHNB will (a) hire staff who are required for the project and provide the administrative and technical control and supervision of the staff; (b) provide the administrative and fiscal support for the project including accounting, maintenance of necessary records, and reports for federal or state financial reporting requirements; and (c) supervise and implement the project according to the scope, workplan, and timing as described in the grant.

3.3 Relationships with other state and community agencies/programs

The Newborn Hearing Screening Program interacts with the newborn screening programs in all hospitals which provide perinatal services. Relationships have been developed with audiologists throughout the state and with various early intervention service providers.

The Early Intervention Section provides early intervention services through state programs and staff, and through contracts with community providers. Special projects including: respite services for infants and toddlers with developmental delays and young children with serious or chronic illness; Keiki Tech Project to provide assistive technology; Inclusion Project and Keiki Care to increase capacity of community preschools and family child care providers to serve children with special needs; Project Kako`o to serve parents with cognitive challenges who have infants and toddlers; and Project SEEK to increase the State's capacity to identify infants and toddlers with special needs. EIS collaborates with Public Health Nurses; Healthy Start programs under the Maternal and Child Health Branch; Early Head Start Programs; and the Department of Human Services Child Protective Services. EIS also provides interim care coordination and developmental/behavioral screening to support eligible children ages 3-5years in their application and transition into Department of Education Special Education Preschool services.

The Hawaii Early Intervention Coordinating Council addresses issues related to the planning, implementation, evaluation, and monitoring of the statewide system of early intervention services. Members are appointed by the Governor and include: parents of children with disabilities under age 6 years, providers of early intervention services, legislator, pediatrician, Governor's Special Assistant on Children and Families, and representatives from the Department of Education, Department of Human Services, University of Hawaii College of Education, and a health insurance company. A member of the Federal Intervention Coordinating Council serves as an ex-officio member.

Other programs and advisory committees within CSHNB that will interface with HECHDI Project include the following: The Newborn Metabolic Screening Program assures that all newborns are screened for seven disorders including phenylketonuria and congenital hypothyroidism, tracks infants who are not screened or have positive tests, assures appropriate and timely treatment, provides education to health care providers, and sets standards/guidelines. The Newborn Metabolic Screening Advisory Committee includes physicians, nurses from various birthing facilities, medical insurance plan representatives, parents, and other Department of Health program representatives. Genetics activities include: assess genetic needs; develop policies and programs to meet genetic needs of the community; promote the prevention, treatment, and rehabilitation of genetic disorders; and provide education on genetics. The State Genetics Advisory Committee includes consists of representatives from public health, health care organizations, consumers, laboratories, March of Dimes, and health insurance.

Community agencies that will interface with the HECHDI Project include: March of Dimes-Chapter of the Pacific and Healthy Mothers Healthy Babies Coalition.

CHAPTER 4. AVAILABLE RESOURCES

4.1 Staff

4.1.1 Newborn Hearing Screening Program Coordinator, EIS, CSHNB

The state NHSP Coordinator (audiologist) is responsible for the planning, development, and implementation of statewide newborn hearing screening services; identification and assessment of needs and resources; promotion of collaboration with national experts, the state agency, physicians, and service providers in the development of screening programs at community-based sites throughout the state; and development, evaluation, and implementation of methods and procedures to be use in screening. A contracted audiologist is currently working approximately 20 hours per week to carry out the newborn hearing screening duties, provide audiology support for children with hearing loss in transitioning to early intervention services, and provide consultation to the state early intervention programs.

4.1.2 Newborn Hearing Screening Program Clerk Typist, EIS, CSHNB

The Clerk Typist's major duties are in the follow-up and tracking of infants who do not pass hearing screening in the hospital. This position is responsible for the telephone and mail contact of parents to schedule infants for rescreening when notified by hospitals when they are unsuccessful in their scheduling. This position is responsible for the computer data tracking system, and merging of files provided by the hospital newborn hearing screening programs.

4.1.3 Other

The EIS Supervisor will provide consultation/technical assistance in the further development and implementation of early intervention services for infants and toddlers with hearing loss.

The Newborn Metabolic Screening Program (NBMSP) Coordinator will continue to share NBMSP information, forms, brochure, manual and other materials with NHSP, and will be part of efforts to look at stronger linkages with NHSP.

State Genetics Coordinator is assisting with efforts to consider linkage of the NBMSP and NHSP databases, and to promote genetic evaluation and counseling for infants/children with hearing impairment and their families.

A CSHNB Research Statistician (Title V funded) will assist with data analysis as needed. The establishment of this position is expected to be completed soon.

The Family Health Services Division (FHSD) Data Processing Systems Analyst will assist in reviewing the HECHDI data system to determine the method of linkage with the FHSD early intervention data system.

4.2 Funding: State general funds are available for current operating costs for NHSP. Funds are not sufficient for program expansion with hiring additional staff or purchasing new hearing screening equipment. It should be noted that while the rest of the nation continues to enjoy a booming economy, Hawaii remains in an economic recession. Budget restrictions are a continual concern for State programs, especially those which are not mandated by either law or the court.

4.3 Facilities: NHSP is located at the EIS office in a commercial building in central Honolulu. NHSP's one large office room for the Coordinator and Clerk Typist will be used to house the additional HECHDI Project staff. With the physical location in the EIS office, the Coordinator is easily able to interface with the EIS Supervisor and other staff regarding early intervention issues. Desks, chairs, telephones, and computers are available for the HECHDI Project staff.

CHAPTER 5. IDENTIFICATION OF TARGET POPULATION AND SERVICE AVAILABILITY

5.1 Target population

The target population includes all infants born in the state of Hawaii, excluding infants who died or transferred out of state, who have a hearing impairment. The annual birth rate is approximately 17,600.

5.2 Needs, special problems and barriers facing the target population

5.2.1 Geographic issues - distribution of population and health resources, transportation barriers

The state of Hawaii is composed of seven populated islands located in four major counties. As of July 1, 1997, the state's resident population was 1,186,602 persons, with 73% living in the City and County of Honolulu on the island of Oahu, 12% living in Hawaii County (island of Hawaii), 5% live in Kauai County (islands of Kauai and Niihau), and 10% living in Maui County (islands of Maui, Molokai, and Lanai). The City and County of Honolulu is the most urbanized with a third of its land area and 96 percent of its population in urban communities. The remaining counties are primarily rural and are often grouped together in the term "Neighbor Islands".

Hawaii's unique island topography poses special problems for families in accessing health care services. The majority of tertiary health care facilities, specialty and sub-specialty services are located on Oahu. Consequently, Neighbor Island and rural Oahu residents often must travel to Honolulu for these services, which is a financial barrier for Neighbor Island residents since round-trip airfare per person is about $100. Geographic access is further limited because of inadequate public transportation in all areas of the state except for the city of Honolulu, and residents in rural communities often need an automobile to travel to health services.

5.2.2 Cultural/language issues

The State of Hawaii is unique in that the ethnic composition is heterogeneous with no single ethnic majority. The four largest self-reported ethnic groups which make up 73% of the total population are Caucasian (22%), Hawaiian/Part Hawaiian (21%), Japanese (20%), and Filipino (10%). The proportions of ethnic groups differ by county. Because of this ethnic diversity, there are a number of people for whom English is a second language. In 1997, approximately 7.2% percent of the states public elementary school children were enrolled in the Students with Limited English Proficiency Program, an increase from 5.2% in 1993. According to the 1990 census data, 25% of the residents over 5 years of age reported speaking a language other than English at home and of this population, 18.7% reported speaking English as "Not well or Not at all".

Cultural issues relate to the understanding of hearing impairment and disabilities. In the experience of several audiologists, some parents perceive hearing impairment as a "curse" or "shame" and do not acknowledge that their child has a hearing loss, refuse to have the child use a hearing aid, and refuse early intervention services.

5.2.3 Economic issues

While the rest of the nation continues to enjoy a booming economy, Hawaii remains in an economic slump. The slow economy is reflected in a very low 0.1% population growth, according to the U.S. Census Bureau estimates. Many families are moving to other states in their search for improved economic opportunities. Bankruptcy filings for 1998 were over 30% higher than in 1997, continuing the rising trend that began in 1990. The National Governors' Association reports that a survey of National Association of State Budget Officers found that Hawaii and Alaska were the only states that had to cut their state budgets. The unemployment rate in Hawaii continues to hover around 5.5%, one full percentage point higher than the national rate. These poor economic indicators are even more significant since Hawaiis cost of living is 30 to 40% higher than that of the rest of the nation. Unfortunately, the state legislative session ended in May 1999 with no significant progress in solving the states economic woes. Over the past five years, the state Title V Maternal and Child Health Branch and CSHNB have been negatively affected by decreased funding and loss of positions. The funding for the Early Intervention Section within CSHNB is fortunately preserved because of its mandate to intervention services, as specified under Part C of the Individuals with Disabilities Education Act (P.L. 105-17), Hawaii Revised Statutes §321-351 to 354, and the Felix Consent Decree, but it has been difficult to obtain additional funding to provide needed services.

Based on the 1990 Census, 8.3% of the population in Hawaii are below the poverty level. Many children and families are below the poverty level - 12.6% related children under age 5 years and 10.5% between ages 5 to 17 years; 19.6% families with a female head of the household; 41.7% families with related children under age 5 years and 29.8% families with related children under age 18 years. The numbers of persons and families below the poverty level in Hawaii are understated, since the poverty thresholds are 15% higher in Hawaii, but data are based on National poverty thresholds.

5.2.4 Health care coverage

Data from the Health Department's 1998 Hawaii Health Survey reveal that a total of 73,934 individuals (6.4% of the population) in Hawaii were uninsured. Rates vary by ethnicity, county, poverty level, and age. The largest uninsured ethnic groups were Caucasian (8.6%), followed by Hawaiian/Part Hawaiian (7.0%), Filipino (5.0%), and Chinese (4.6%). Maui County had the highest percentage of uninsured residents (9.2%), followed by Kauai County (8.4%), Hawaii County (8.1%), and Oahu (5.6%). Uninsured rates were highest for individuals between 0-100% poverty level (13.2%), followed by those between 101-200% poverty level (7.1%), and between 201-300% poverty level (6.5%). There were 15,891 children age 0-18 years who are uninsured - under age 1 year (5.2%); age 1-6 years (4.2%); age 7-14 years (5.2%); and age 15-18 years (6.3%).

There has been a major trend toward managed health care both in the public and private sector. However, economic changes have led to a tightening of the eligibility within the Medicaid 1115 waiver managed care demonstration project (called QUEST) which began in August 1994. The result has been a major fall in enrollment from the high of 160,000 in January 1996 to the current level of 124,000 individuals. Changes in eligibility, establishment of an assets test, and cuts in benefits occurred in 1995 and 1996.

The Department of Human Services is the lead agency in Hawaii for the state's Child Health Insurance Program (CHIP). The state's CHIP plan requesting a Medicaid managed care expansion program was approved in 1998 by the Health Care Financing Administration with an implementation targeted for the last quarter of calendar year 2000. The goal is coverage of all uninsured children under age 19 with family incomes less than 200% FPL.

Hawaii has historically had a large proportion of its population covered by some form of health insurance. In 1974, the Prepaid Health Act mandated all employers to provide health insurance to employees working more than 19 hours a week. This has had a major impact in assuring that a large segment of the residents in Hawaii had health insurance coverage. Although the total uninsured population for Hawaii is relatively low compared to that for other states, there are a large number of families who are underinsured and would be unable to handle the medical expenses of a catastrophic event or prolonged illness that requires extensive medical care and hospitalization.

5.3 Existing services and support for the project

5.3.1 Newborn Hearing Screening Program, EIS, CSHNB

NHSP is responsible for the planning, development, and implementation of statewide newborn hearing screening program services; identification and assessment of needs and resources; promotion of collaboration with national experts, the state agency, physicians, and service providers in the development of screening programs at community-based sites throughout the state; and development, evaluation, and implementation of methods and procedures to be use in screening. NHSP facilitates the establishment of hospital hearing screening programs, provides training and technical assistance, and assistance with followup for infants who need rescreening or referrals for audiological assessments. NHSP maintains the central computer data system, from which data files are transferred monthly from most hospitals, except for two hospitals which will not release names. See Appendix F for the Hawaii law on newborn hearing screening.

Hospital newborn hearing screening programs are now available in all hospitals with perinatal services, with the last hospitals added in 1999. See Appendix H, Table 5, for the hearing screening equipment, screeners, and audiology staff available at each hospital. Each hospital program has a coordinator.

5.3.2 Audiological assessment and amplification

Most audiologists are available on the island of Oahu, with few located on the Neighbor Islands. Equipment needed for complete infant audiological assessment and amplification are available only on Oahu. When infants/children need audiology assessments, and there are no audiologists on a Neighbor Island, the state NHSP assists families with airfare and transportation arrangements for travel to Oahu for services.

5.3.3 Early intervention services

The Early Intervention Section (EIS) assures that infants and toddlers age 0-3 years who are developmentally delayed, biologically at risk, or environmentally at risk receive appropriate early identification and intervention services as specified under Part C of the Individuals with Disabilities Education Act (IDEA), Hawaii Revised Statutes §321-352, and Felix Consent Decree. Statewide services include: information and referral, single entry point for services into statewide system, care coordination/family support, early intervention (including audiology, nutrition, vision services, special education, speech language, occupational therapy, physical therapy, social work, psychological services, assistive technology), and respite services. EIS is responsible for the planning, development, and implementation of statewide early intervention services; assessment of needs and resources; and promoting public and private collaboration in the development of services. Early intervention services are available on all islands. EIS also assures that children age 3-5 years who may be eligible for Department of Education (DOE) special education receive interim care coordination and developmental and behavioral screening to support their application and transition into the DOE.

5.3.4 Other services and support

NHSP has participated with the Marian Downs National Center for Infant Hearing, which is federally funded to facilitate state systems of universal hearing screening, audiologic assessment, and intervention.

The Marian Downs National Center for Infant Hearing (University of Colorado), National Center for Hearing Assessment and Management (Utah State University), Joint Committee on Infant Hearing, Early Hearing Detection and Intervention Program (Centers for Disease Control and Prevention) provide written materials, conference calls, and/or website materials for state use in the development of the universal hearing screening, assessment, and early intervention services.

CHAPTER 6. NEEDS ASSESSMENT

The information for this needs assessment is from (1) three separate databases for newborn hearing screening, audiological assessment, and early intervention, (2) client records, (3) program self-assessment of strengths, needs, and barriers, and (4) discussion with health professionals who have knowledge of newborn screening, early intervention, genetics, and medical home issues.

6.1 State level advisory committee

Current strategies/strengths: There is interest in establishing a state level advisory committee. CSHNB has similar committees, such as the Hawaii Early Intervention Coordinating Council, Newborn Metabolic Screening Advisory Committee, Hawaii Birth Defects Program Advisory Committee, Genetics Advisory Committee, and Title V CSHCN Planning Committee.

Needs: There is no state level advisory committee for hearing screening, assessment, and early intervention services for infants/children with hearing impairment. The establishment of this committee will help to improve the oversight integration, collaboration, and coordination of these services.

Barriers/special problems: Staff resources are not sufficient to provide the support for a state level advisory committee and subcommittees/workgroups.

6.2 Screening

Current strategies/strengths:

(1) Hawaii's NHSP is supported by a 1990 law which mandated the Department of Health to develop methodology to establish, implement, and evaluate a statewide program and develop guidelines for screening, identification, diagnosis, and monitoring of infants and children to age 3 years with hearing impairment (HRS §351-361 to 363) (see Appendix F).

(2) Newborn hearing screening is standard medical practice for newborn care in Hawaii.

(3) The structure of the newborn hearing screening program, including screening procedures, personnel, timing, and responsibility for documenting and communicating results, is in place (see Appendix G). Hospitals have their own policy and procedures, modeled after the state NHSP sample policy and procedures manual. The protocol from hospital screening to NHSP notification to referral to early intervention services is in place. The data system to share information between the hospitals and the state NHSP is in place.

(4) Newborn hearing screening is currently available in all birthing facilities in the state, with the last hospitals added during 1999. Thus screening is available to 99.3% of the births statewide in Hawaii. The remaining 0.7% are home births.

(5) The estimated statewide rates of newborn hearing screening (see rates in Appendix H, Tables 1 to 3, less 0.7% to account for home births) are:

1997: 96.1%

1998: 97.7%

1999 (first 6 months): 98.0%

Needs:

(1) The estimated statewide rates for infants with confirmed hearing loss (see Appendix H, Tables 1-3) for the January 1998 to June 1999 are:

Permanent conductive hearing loss: 0.9 per 1,000 births

Sensorineural hearing loss: 3.4 per 1,000 births

Total: 4.3 per 1,000 births

These numbers show the need to continue newborn hearing screening and that screening has been effective in detecting infants and young children with hearing loss.

(2) In 1998, approximately 2.7% of all infants did not receive indicated screening or assessment - 1.6% did not receive the initial screen, 1.0% did not receive an indicated rescreen, and 0.1% did not have an indicated audiological assessment. With 17,527 eligible births in 1998 (excluding 90 neonatal deaths), this would be equivalent to approximately 473 infants annually whose hearing status was not determined. Approximately 12.9% (121/939) of children who did not pass initial hearing screening did not return for rescreening. Further examination of family reasons for refusals or barriers to obtaining services may help to identify solutions to this problem.

(3) There is a need to decrease the referral rates for rescreening and the false positive rates. In 1998, the referral rate was approximately 8.0% (range 2.3-15.8% for individual hospitals) (see Appendix H, Table 6). The false positive rate was approximately 92.2% (see Appendix H, Figure 1). The false positive rate indicates that for every 13 infants with an initial screen result which requires follow-up, only 1 child is confirmed with a hearing loss. The high false positive rate decreases confidence in the screen, and may result in less rigorous follow-up by primary care providers to ensure rescreening.

• Four hospitals which have on duty nurses or volunteer screeners and non-automated equipment have rescreening referral rates of 12.4% to 15.8%. The average rescreening referral rate for these hospitals (13.3%) is twice that of the other hospitals (6.7%). Using automated hearing screening equipment with higher specificity would significantly decrease the rescreening referral rate.
• Parents are not informed directly of hearing screening results. Results of screens and rescreens are sent to the child's physician, and parents are informed only when results indicate a need for further follow-up. In order to further promote the participation of families in the care of their children, it would be desirable to increase family awareness of newborn screening and results.
• Outreach to midwives statewide and a protocol for screening for homebirths needs to be established. There is currently a pilot project on the island of Molokai with outreach to midwives, with a plan to expand the project statewide if successful. There were 125 homebirths statewide in 1998 (data from the Department of Health Office of Health Status Monitoring).

Barriers/special problems: There is a lack of staff resources to fully develop and implement plans for various activities. State and hospital funding resources to purchase new automated screening equipment are limited. The above data was obtained only with long, intense, and sometimes manual efforts, and obtaining this data on a regular basis cannot be done without additional resources or a better data system.

6.3 Procedure for linking newborn hearing screening program with the infants' medical homes, family support, and early intervention

Current strategies/strengths: (1) The concept of the medical home is well-known in Hawaii, with Dr. Calvin Sia introducing the concept to health providers through statewide educational sessions beginning over 10 years ago. Ideally the medical home will coordinate services and link children/families to support, education, community, and other services, although this is sometimes difficult for primary care providers with busy practices. The Hawaii Medical Association currently has a "Malama Pono" project to promote medical homes for young children with special health care needs. (2) The system is in place to link NHSP with the infants' medical homes and early intervention (Part C of IDEA) (see Appendix G). The medical home is notified of hearing and rescreening results by the hospital screening program or by NHSP. NHSP works with the medical home to arrange or assure follow-up. Either the NHSP or medical home can notify H-KISS (central intake line for early intervention services) of a children with hearing impairment needing services. (3) Many physicians are interested in and aware of the need for early identification and intervention for hearing impairment, and will request immediate hearing testing.

Needs: (1) There is a need for more collaborative relationships between the medical home, other health providers, and early intervention staff in providing family support and addressing a child's service needs. Concerns are sometimes expressed that the medical home is not provided the information to be more involved with the family and others in service planning, for example, some primary care providers were not informed of services (e.g., communication choices, early intervention, or other services) after referrals for services were made. (2) Families have expressed an interest in a child health record for families to keep, that would be continually updated and shared with all providers, as a way for families and providers to share information.

Barriers/special problems: Sufficient staff resources are needed to convene committees to address sharing of information.

6.4 Audiologic follow-up and diagnosis of infants suspected of hearing loss

Current strategies/strengths: The NHSP Coordinator is pursuing the development of infant audiological assessment guidelines to be used by pediatric audiologists statewide. A meeting of pediatric audiologists is scheduled in February 2000 to develop guidelines for Hawaii based on a suggested protocol for infant audiologic assessment from the Marion Downs National Center for Infant Hearing.

Needs: (1) There are no infant audiological assessment guidelines in effect. A draft was discussed in 1997 but never finalized. (2) Some assessments are currently being done with limited equipment, resulting in incomplete testing and requiring a long period of follow-up before the diagnosis is confirmed. (3) There is a need to enhance services during the period from screening to assessment to early intervention, in order to reduce the number of children who do not receive needed services. For children born during the period January 1998 to June 1999, only 82% had completed audiological assessment by age 3 months. For children referred for comprehensive audiological assessment, 23.8% (42/176) refused assessment, and 4.5% (8/176) were lost to followup. See Appendix H, Tables 2 and 4.

Barriers/special problems: There are insufficient number of audiologists and insufficient equipment for complete infant audiological assessments on the Neighbor Islands. The cost to obtain additional equipment would be prohibitively expensive and not cost-effective for private audiologists.

6.5 Data and tracking system

Current strategies/strengths: (1) There is already a centralized data system for newborn hearing screening. HI*TRACK/HI*SCREEN (National Center for Hearing Assessment and Management, Ustah State University) is used. Hospitals enter data into their computers and send floppy disks with data monthly to NHSP where data is merged. (2) There are 2 additional databases (the NHSP Coordinator's audiological assessment database, and the Early Intervention Section HEITS) from which NSHP can use to track clients and analyze data. (3) The Family Health Services Division (FHSD) is in the process of developing an integrated early intervention data system for the Early Intervention Section (not including newborn hearing screening and audiological assessment), early intervention programs, and Healthy Start. These programs currently have separate individual databases but share information collecting and reporting requirements. A Request for Proposals was issued in January 2000, with the anticipated term of the contract from March 15, 2000 to December 31, 2000. The audiological assessment can be included in the FHSD integrated data system, with additional funds. (4) Neometrics Inc. has been providing the data system for the Hawaii Newborn Metabolic Screening Program, which includes demographic information, laboratory results and follow-up information. They are interested in working with CSHNB in developing a plan to integrate the Newborn Hearing Screening and Newborn Metabolic Screening data systems.

Needs: (1) The system to retrieve and compile data for analysis is inefficient and time-consuming. The three databases (newborn hearing screening, audiological assessment, early intervention services) are not linked and therefore need to be examined separately. Charts need to be reviewed to obtain additional data that are not in the database. Manual counts from computer data are sometimes necessary. (2) There is a need for the FHSD integrated early intervention data system to additionally include the audiological assessment database, since it includes names of children who are subsequently enrolled in early intervention services. (3) The data systems for Newborn Hearing Screening and Newborn Metabolic Screening are not linked. The hospitals enter the newborn hearing screening data into the HI*TRACK/HI*SCREEN database. The Oregon State Public Health Laboratory, the regional laboratory which tests newborn blood specimens for Hawaii, enters data into the Neometrics database system for screening and case management. There is a need to explore the feasibility of linking the newborn screening systems.

Barriers/special problems: Additional staff resources are needed to improve the data/tracking system so that data can be efficiently and routinely monitored. Additional funds are needed to add the audiological assessment data system as a component to the FHSD integrated data system.

6.6 Professional and public education

Current strategies/strengths: Education/training on children with hearing impairment was provided to early intervention care coordinators in June 1999 and training on language assessment will bre provided to early intervention providers in February 2000.

Needs: The need for increased professional and public awareness of early hearing detection and intervention is suggested by the number of families that are either lost to follow-up or refuse screening/rescreening, audiologic assessment, or early intervention services. Health providers have an important role in assuring that every child is screened and receive appropriate follow-up. Continuing education for health care and other providers is needed in areas such as new approaches/technology to screening, assessment, and treatment; cultural issues; genetic aspects of hearing loss; and other areas.

Barriers/special problems: Additional staff resources are needed to develop and implement a plan for education.

6.7 Evaluation plan

Current strategies/strengths: FHSD promotes the use of performance and outcome measures by all programs. Performance and outcome measures is now in place for Title V Maternal and Child Health Block grant activities. A similar approach to evaluating newborn hearing screening, assessment, and intervention services can be used for the HECHDI Project.

Needs: An evaluation plan is needed - none is in place.

Barriers/special problems: There are insufficient staff resources to develop and implement an evaluation plan that involves performance/outcome measures and consumer and provider surveys. Performance/outcome measures need to be built into the data and tracking system.

6.8 Family support

Current strategies/strengths: (1) Family support is currently provided by care coordinators and other staff within the early intervention service system. (2) The NHSP Coordinator has developed a plan for "Early Audiology Support for Children with Hearing Impairment" (see Appendix G) and is now providing limited early intervention audiology support for children with hearing impairments, for family members, care coordinators, early intervention staff, and other service providers, in areas including followup services and support to care coordinators and families, information library, education/training, and parent support group. However, additional staff are needed for full implementation of this audiology support.

Needs: (1) There is a need for comprehensive family support which addresses the social and emotional impact of having a hearing impairment, in addition to the medical, educational, and communication aspects. (2) There is a lack of proper training for care coordinators to address the social and emotional impact of hearing impairment. (3) There is a need for a parent-to-parent network to provide individual and group support, since some families may feel more comfortable relating to persons who have had similar experiences, rather than to health care provider or program staff. (4) A library of materials, videos and other information with practical information regarding the management of children with a moderate degree of hearing loss, and library of educational toys for hearing impaired children, would increase the resources available for parents.

Barriers/special problems: There is a lack of staff resources to develop and implement a plan for a parent-to-parent network for individual and group support, provide training, or expand/develop a library of informational materials and educational toys.

6.9 Early intervention services

Current strategies/strengths: Services such as aural habilitation, hearing aid fitting and management, or signing, are available for children with hearing impairment enrolled in early interventions services. Services are provided by private providers under fee-for-service arrangements, with payment either by insurance, Medicaid, or the Early Intervention Section. Each child has a care coordinator who works with the family to develop an Individual Family Support Plan (IFSP).

Needs: (1) There is a need to have a standard assessment tool to evaluate a child's development, evaluate therapy outcomes, and to identify a child's need for additional services. Use of a standard tool will help to measure the effectiveness of services, to compare different intervention approaches, or to indicate areas for improvement. (2) An early intervention specialist is needed to address improvements in early intervention services for children with hearing impairment, to train service providers and care coordinators, to provide consultation for difficult or unique situations, and to monitor service delivery. This position requires experience involving work with children with hearing impairment, fluency in sign language, and specialized knowledge in the provision of early intervention services to families of young children with hearing impairment. (3) With the emergence of new technology for newborn hearing screening, children with auditory neuropathy now being identified. Auditory neuropathy describes a condition in which the individual displays auditory characteristics consistent with abnormal neurological function related to the eighth cranial nerve for hearing. In Hawaii, since 1998, eight children have been identified, primarily among infants in the neonatal intermediate and intensive care units. Presently there are no guidelines for treatment.

Barriers/special problems: There are no resources available for a position for an early intervention specialist for children with hearing impairment.

CHAPTER 7. COLLABORATION AND COORDINATION

7.1 Existing methods of partnerships, collaboration, and coordination

1) The Newborn Hearing Screening Program, Early Intervention Section, Newborn Metabolic Screening Program, and the State Genetics Coordinator are organizationally within the CSHNB, where collaboration and coordination are promoted.

2) NHSP has ongoing communication and meetings every 6 months with hospital newborn hearing screening coordinators.

3) NHSP and hospital newborn hearing screening units are linked by the computerized client data tracking system in which data is entered by the hospital staff and merged into the state central database on a monthly basis.

4) For direct services with children/families, referral mechanisms exist between the state NHSP and hospital newborn hearing screening unit, and between NHSP and community audiologists and early intervention programs (see Appendix G). H-KISS is the central intake line for entry to early intervention services, and referrals are made by hospital NHSP, physicians, audiologists, family members, public health nurses, and other health care providers. NHSP sends letters to the child's physician/medical home regarding screening/rescreening results, whether screening was done prior to hospital discharge, whether parents refused screening/rescreening, and need for rescreening or audiologic assessment.

7.2 Planned methods of partnership, collaboration, and coordination

1) A formal HECHDI Advisory Committee will be established, with the following purposes: To advise and assist in further development of a statewide system of early childhood hearing detection and intervention services; to advise on policies and protocols regarding hearing screening, audiologic assessment and amplification, and early intervention services; to promote communication, coordination, and collaboration among public and private service providers; and to monitor the project's progress in achieving goals/objectives and improving quality indicators. Subcommittees, to be determined by the Committee, may include: policies, procedures, guidelines; professional and public education; resources; and data/evaluation. Committee members will include:

HECHDI Project Coordinator

Early Intervention Section Supervisor

Children with Special Health Needs Branch Chief

State Genetics Coordinator

Family Health Services Division Chief

Parents / family members of children with hearing loss

American Academy of Pediatrics Hawaii Chapter/Medical Home Program

Hawaii Academy of Family Physicians

Hawaii Medical Association/Malama Pono project to promote medical homes for CSHCN

University of Hawaii School of Medicine/Department of Pediatrics

Center for Disability Studies (Hawaii University Affiliated Program)

Pediatric audiologists

Hospital newborn hearing screening programs

Hawaii Speech-Language-Hearing Association

American Academy of Audiology Hawaii Chapter

Other

2) Formal collaborative relationships will be established between the HECHDI Project, the primary care providers/medical homes, audiologists, early intervention services, other service providers, in the policies and protocols established for screening, assessment, and early intervention, and the referrals/transition between services.

3) Informal collaborative relationships between HECHDI Project, primary care providers/medical homes, audiologists, early intervention services, other service providers, consumers, community organizations such as March of Dimes-Chapter of the Pacific and Healthy Mothers Healthy Babies Coalition, and others will be also be strengthened through methods such as ad hoc meetings regarding specific issues, presentations and discussions at various meetings, individual contact, education/training, articles in newsletters, etc.

CHAPTER 8. GOALS AND OBJECTIVES

The two goals for the project are:

Goal 1: To improve the system of hearing screening, assessment, and linkage to early intervention services for children age 0-3 years with hearing impairment, in order to assure that all children with hearing impairment receive appropriate services.

Goal 2: To refine family support and early intervention services to meet the needs of young children with hearing loss and their families.

Goals, objectives, and activities are shown on the following pages.

HAWAII EARLY CHILDHOOD HEARING DETECTION AND INTERVENTION PROJECT

GOALS, OBJECTIVES, AND ACTIVITIES

CHAPTER 10. PROJECT METHODOLOGY

10.1 HECHDI Project model

A model of the HECHDI Project, shown on following page, has the following features:

- The HECHDI Advisory Committee will advise and assist in further development of a statewide system of early childhood hearing detection and intervention services; policies and protocols regarding hearing screening, assessment, and early intervention services; plans for professional and public education; resources; data/evaluation; and other areas. It will also track the Project's progress in achieving goals/objectives and improving performance and outcome measures. Family members of children with hearing loss will be members of the Advisory Committee.

- Services for children with hearing loss and their families are ideally comprehensive, community-based, family-centered, and culturally competent. Hearing screening, assessment, and early intervention services are linked and coordinated with medical home, families, and other services.

- The medical home is promoted. All children should receive regular ongoing comprehensive care within a medical home.

- Families of CSHCN will participate in decision making at all levels.

- Performance and outcome measures will be used as indicators of the system/service effectiveness or need for improvement.

10.2 Involvement of Title V CSHCN program and families

One of the project directors is the state Title V CSHCN director. The HECHDI Project is in the Title V Children with Special Health Needs Branch. The needs assessment described in Chapter VI will be part of the Title V CSHCN Needs Assessment, which will be presented to the Title V CSHCN Planning Committee (which includes family members of CSHCN) in May 2000.

Family members of children with hearing loss will be members of the HECHDI Advisory Committee. They will also be members of subcommittees/workgroups, such as in planning professional/public education, development of guidelines, or development of informational materials for families. Family members will be hired for the parent-to-parent network to provide individual and group support for parents of children with hearing loss.

10.3 Project Activities Time Allocation Table - See activities and timeline in Chapter 8.

CHAPTER 11. PLAN FOR EVALUATION:

The evaluation will include:

(1) Process evaluation of attainment of stated goals, objectives, and activities: These items are itemized in Chapter 8 - Goals and Objectives.

(2) Performance and outcome measures: These will be monitored, including by geographic area and by hospitals. A subcommittee of the HECHDI Advisory Committee will identify and/or develop performance/outcome measures, including developing the definition and identifying data source, method to obtain data, and frequency of reporting. Data will be used as indicators of service effectiveness and/or need to improve services.

Measures will include:

Screening:

Percent of infants screened during birth admission

Percentage of infants screened by age 4 weeks

False positive rates for screening.

Rates of referral for rescreening (after the initial screen)

Rates of infants who were referred who obtained rescreen

Assessment:

Rates of audiological assessment by age 3 months

Rates of infants who were referred who obtained audiological assessment

Percentage of audiological assessments that meet criteria established in the infant

audiological assessment guideline

Early intervention:

Rates of enrollment for early intervention services by age 6 months

Rates of achievement of appropriate language and communication developmental

outcomes

(3) Consumer and provider surveys: A subcommittee of the HECHDI Advisory Committee will assist in developing consumer, health provider, and early intervention provider surveys regarding satisfaction and knowledge in the areas of assessment, early intervention, coordination of services, communication needs and options, and family support. The subcommittee will include family members and persons of different ethnic/cultural backgrounds. Surveys will be conducted annually. Data will be used as indicators of service effectiveness and/or need to improve services.