Arizona CDC EHDI Grant (2001)

GRANT NARRATIVE

I. Understanding the Problem and Current Status

Early hearing detection and intervention (EHDI) services significantly impact the long-term outcomes for children who are Deaf or Hard of Hearing. Studies have shown that the best predictor of language ability is identification at three months and intervention by six months of age. Identification later than six months results in delayed language acquisition and impact social and emotional development. Universal Newborn Hearing Screening (UNHS) is supported by national initiatives such as the Healthy People 2010, Maternal and Child Health Bureau (MCHB) objectives, the Joint Committee on Infant Hearing , the American Academy of Pediatrics position statement and the National Institutes of Health Consensus statement.

The primary goal of the Arizona EHDI project is to ensure that each child who is Deaf or Hard of Hearing has the opportunity to reach their potential by removing the barrier of late identification. The barrier that this proposal addresses is assuring that all infants are screened and that no family is lost to follow-up through development of an integrated tracking system.

The Need for Tracking and Surveillance Systems

In order to fully realize potential academic, economic, and personal benefits of the EHDI system, its processes and infrastructure components must work together to ensure that children who are screened receive timely, appropriate assessment and early intervention (EI) services.

• Public health surveillance
• Process improvement
• Document need for further infrastructure building and identify gaps in services

In 1998, Arizona was ranked 48th in overall child well-being indicators by the Kid's Count program funded by the Annie E. Casey Foundation. Especially prevalent barriers in Arizona included a high poverty rate (23%), the rate of uninsured children (25%) and a high teen pregnancy rate (45:1000). In addition to the barriers identified in the Kid's Count document, there are problems specific to delivering health care in a large urban setting and in very remote areas of the state. Remote areas include the Navajo nation, which covers a large area with extremely low population density with language, cultural, transportation and telecommunication issues.

Arizona had approximately 84,000 live births in 2000. More than 51,000 (51,154 in 1998) were born in Maricopa County, a large urban center with inner city issues. In 1998, 41.5% of all births were covered under the Arizona Health Care Cost Containment System (AHCCCS), which is a Medicaid waiver program. Approximately 36% of all babies born in 2000 were Hispanic, 5% Black or Asian, and 7% Native American.

Early Hearing Detection and Intervention in Arizona

The Never Too Young (NTY) program was created in 1987 within the Arizona Department of Health Services(ADHS) through legislation based on high risk screening. Although the legislation did not require screening, it established a program within ADHS, created an advisory committee, and authorized the establishment of a registry of children who are "at risk" for hearing loss. Information on the Advisory Committee and membership can be found in Appendix A. A component of legislative recommendations currently being drafted will expand the advisory board to include parent, consumer, Indian Health Services (IHS) and minority population representation.

Arizona has made tremendous progress in hearing screening without a legislative mandate. This proposal represents an opportunity for Arizona to ensure not only that all babies are screened, but also that the critical links to assessment and EI are made before the age of six months.

Current Status of Screening

To improve the consistency of screening among hospitals, screening guidelines are being developed through a grant from St. Luke's Health Initiatives (SLHI) and through the assistance of a Maternal and Child Helath Bureau(MCHB) UNHS grant. These guidelines are being implemented statewide over the next two years. The guidelines promote minimal standards for screening protocols such as:

• Communication with families
• Standardized referral criteria
• Data collection
• Quality assurance measures
• Informed consent protocols
• Standardized screening levels and technologies
• Linkages with the Medical Home
• Protocol for identifying children at risk for late onset or progressive hearing loss

Inpatient and Outpatient Screening

Hospitals, Indian Health Services (IHS), public health, and the medical and professional communities have worked together over the past 5 years to ensure that more than 95% of all babies born in Arizona are screened for hearing loss within their first month of life. See Appendix B for flowcharts depicting the key processes.

By July 2001, all but one hospital out of forty-nine will have implemented UNHS programa. Efforts are being made to enable that hospital, which has approximately 400 births per year, to either implement a UNHS program or to develop an alternative program to ensure consistent early hearing assessment in the community.

Initial refer rates average 6% statewide after the inpatient screening. Nearly all hospitals offer an outpatient screen within 2-4 weeks after discharge from the birth admission for infants who require a referral following the initial screen. This reduces the refer rate to approximately 1%. A refer rate of 1% assures that 30% or more of all infants referred for assessment will be identified as Deaf or Hard of Hearing. The percentage of infants who return for the outpatient screen varies dramatically between 40-75% by program. Those infants that do not return to the birthing hospital are assumed lost to follow-up and are often identified late, although, because of health plan requirements they may be seen at another screening site. At this time Arizona is unable to estimate how many families are actually lost to follow-up.

To address the need for outpatient screening and the potential for progressive and late onset hearing loss, a grant was recently awarded to the EAR Foundation of Arizona (EFAz) in collaboration with ADHS Developmental Clinics. This grant has funded and training for 11 contracted clinics. These clinics routinely provide statewide services to graduates of neonatal intensive care units as well as to children identified as "at risk" by the Arizona Early Intervention Program (AzEIP), which is funded under Part C of Individuals with Disabilities Education Act (IDEA) outreach efforts. The clinics will screen infants missed in hospital-based clinics and those at risk for late onset or progressive hearing loss.

Screening Data

Since 1993, Arizona has been involved with the National Center for Hearing Assessment and Management (NCHAM). Ted Glattke, PhD from the University of Arizona (U of A), was part of the MCHB consortium grant, piloting the use of OAEs in newborn hearing screening programs. This involvement has continued through participating beta test site hospitals that pilot the HI*Track NewbornHearing Screening Data Management and Tracking software. Approximately 35 hospitals are using HI*Track to track screening results, generate physician and parent letters, make referrals and for quality assurance purposes. Several newborn hearing screening programs also use the HI*Track program to track assessment outcomes. ADHS pays for the software licensing fees and technical support to maintain the tracking software in hospitals that voluntarily send data to the NTY program through MCHB block grant funding.

Screeners enter basic identifying information into the screening equipment software at the time the screening is conducted. This data, along with screening outcomes, are then exported from the screening equipment software into HI*Track into the hospital's HI*Track database. See Appendix C for a list of required and option data elements.

Several UNHS programs also use HI*Track to track assessment outcomes (~4). Each month, participating hospitals download the demographic, screening outcomes and follow-up information to a disk that is mailed to the Never Too Young (NTY) program where it is downloaded into a statewide version of HI*Track.

Several issues in data management make it difficult to assess how many infants return for the outpatient screen and how many complete the assessment process: 1) there is currently no standard way to check if all infants are entered into the database at the hospital level; 2) it is difficult to assure that outpatient screening results are linked with the initial record if the outpatient screen is completed at a different facility; and 3) there is currently no linkage that allows assessment data to be sent to the state and linked with the screening database.

The MCHB UNHS grant activities initiated in April 2001 include developing an active follow-up component to the ADHS NTY program, which may be integrated with follow-up activities related to the metabolic/endocrine screening.

IHS is currently working with ADHS to finalize a data sharing agreement. Completion of the agreement will allow a formalized mechanism for sharing newborn hearing screening information. All but one of the IHS hospitals in Arizona are currently screening all newborns for hearing loss and all IHS hospitals use the HI*Track system to collect data.

Summary of Newborn Hearing Screening

Strengths

• Universal newborn hearing screening has been obtained voluntarily.
• Participation, enthusiasm and support are high.
• Tracking systems are in place for most hospitals and the majority of the others are interested and willing to participate (35 of 49 hospitals, 75% of births).
• Enabling legislation is in place, mandatory legislation is being drafted.

• Screening is voluntary
• Most programs are new, vulnerable and in need of significant technical assistance
• Data collection is incomplete
• State statutes are outdated and based on a high risk vs. universal screening model
• There are gaps between in and outpatient screens where families are lost to follow-up
• No links to Newborn Metabolic/Endocrine Screening Program (NM/ESP), other child health databases, or to assessment and intervention

Current Status of Assessment and Amplification

Availability

Audiologists at 13 sites provide diagnostic Auditory Brainstem Response (ABR) testing. 10 of these sites can perform bone conducted and frequency-specific ABRs. 9 sites can perform conscious sedation procedures. All sites have agreed to follow the Arizona Pediatric Audiology Guidelines, which suggest screening, assessment, and fitting criteria to be used with children age 0-3 years.

Rural and remote areas continue to have a significant need for qualified providers. In Northern Arizona, a collaborative inter-agency arrangement has successfully provided itinerant ABR services to remote birthing centers serving the Navajo and Apache tribes, as well as rural Arizona. Community-based focus groups, facilitated by NTY-contracted providers, meet as needed to resolve local issues with funding through the MCHB-UNHS grant.

A collaborative effort between the U of A Speech and Hearing Sciences (U of A) and the ADHS NTY program with funding from the MCHB UNHS grant, provides annual training opportunities to pediatric audiologists. Frequency-specific ABR, hearing aid fitting, and cochlear implants have been addressed in past workshops. Future training will include behavioral assessment, infant mental health issues, cultural competency, middle ear assessment and other topics identified by ongoing needs assessments.

Loaner hearing aids are available for all children identified through UNHS programs, through the HEAR for Kids Project. HEAR for Kids is managed by EFAz and funded by SLHI.

Data on Assessment and Amplification

No coordinated method exists for collecting data on the all of the children assessed or the results, including type and degree of hearing loss. Data collection is incomplete and fragmented. Children's Rehabilitative Services (CRS) collects information on the number of children receiving services and the procedures performed, including specialty medical services. CRS serves approximately 40% of the total population of children with hearing impairment. Data is encounter based and does not identify the degree or type of hearing loss. In addition, some audiologists associated with hospital screening programs collect and enter data into HI*Track.

Estimates for 1999 from the Pediatric Audiologists in Maricopa County are as follows:

• Approximately 300 children received assessment as a result of UNSH.
• 75 children identified through UNHS were diagnosed Deaf or Hard of Hearing.
• 150 children, under the age of 3 years, were identified with a permanent hearing loss and enrolled in EI services.

Summary of Assessment and Amplification

Strengths

• Pediatric audiology guidelines are available and accepted in most communities.
• Funding for assessment and amplification is available including a "safety net".
• Targeted workshops have been available through the U of A.

Barriers

• Diagnostic services are not available in all communities.
• Data collection is not standardized.
• Data elements are missing from some of the data sources (i,e. degree & type of hearing loss).
• No links exist between newborn hearing screening databases or other child health databases.

Early Intervention Services

Statewide Availability

Interim Service Coordinators

The Arizona Early Intervention Program (funded by part C of IDEA) contracts with Interim Service Coordinators (ISC) statewide. Newborn hearing screening program coordinators at hospitals can make referrals to the ISC under the following circumstances:

• A newborn does not return for or does not pass an outpatient screen
• A child is lost to follow up at any point in the process
• The child is "at risk" for progressive or late onset hearing loss

The ISC contacts the family and, if the family agrees, assists them in obtaining follow up services or enrolling them in the appropriate EI program.

Arizona State Schools for the Deaf and the Blind

EI services are coordinated statewide through the Early Childhood and Family Education Program, a division of the Arizona State Schools for the Deaf and the Blind (ASDB). EI services available through ASDB include a home (natural environment) parent advisor program based on the Utah SKI*HI curriculum. The parent advisor program is available statewide to all families at no cost to the family. Center-based toddler and preschool programs are also available in the Phoenix area (Maricopa County) and Tucson (Pima County).

In 1999, 175 families were served in Maricopa County and 302 families statewide through the Early Childhood Family Education program. In 2000, of 238 new referrals, 37% were under six months of age and 55% were under one year of age. A caseload increase of 132% from 1998 to 1999 created a waiting list of more than 20 families in Maricopa County. The caseloads are expected to continue to increase as the remaining hospitals implement programs in 2001 and efforts progress to ensure that families are not lost to follow-up. The repercussions of the increased referrals will continue to build as children who are identified early are now spending an average of 2.5 or more years in the program, compared to a past average of less than one year. The increased need for services is being addressed as follows:

• Additional parent advisors are being trained statewide.
• An additional coordinator was hired in Maricopa county.
• Full time parent advisors are being hired in Maricopa County (others are part time).
• Curriculum is being reviewed for focus on newborn and infant issues.

In addition to ASDB, Desert Voices, which is a private oral school, recently started a program for children age 0-3 years. They are the only noteworthy private source of EI services.

Four locations in Arizona provide cochlear implants for children. The cochlear implant surgeons are affiliated with Mayo Clinic Scottsdale, St. Joseph's Hospital and Good Samaritan Regional Medical Center in the Phoenix area and with University Medical Center in Tucson. A fifth center is anticipated to open in the East Valley of Phoenix within the next year.

Data on Early Intervention Services

The ASDB statewide program collects data on each child served. Most of the information collected in its statewide database could be categorized as demographic and intake?related information. Individual encounter data is tracked for financial purposes. Outcome data, such as standardized evaluations, is kept in each individual file. See appendix D for a copy of the statewide data form. The data is not linked to any other databases. ASDB is interested and willing to link databases and to extend their data collection efforts to include outcome data.

Summary of Early Intervention

Strengths

• Statewide services are available.
• Services are culturally appropriate and offered in a natural environment.
• Programs are well established and familiar to agencies and providers.

Barriers

• Data collection does not include outcome data.
• Funding for statewide services has not increased at the rate of demand.
• There is no link between EI data collection and screening/assessment data.

• Babies are not missed and results are valid.
• Families and providers can identify a clear path from screening to assessment to intervention and are not lost to follow-up along the way.
• Assessment and intervention services are available, timely and appropriate.
• Parents and professionals receive adequate and timely information.

II. Goals and Objectives

The primary goal of the Arizona EHDI project is to ensure that each child who is Deaf or Hard of Hearing has the opportunity to reach their potential by removing the barrier of late identification. The following goals and objectives will allow this primary goal to be reached.

Goal 1. Ensure all newborns are screened and hearing loss is identified.

Goal 2 Ensure that infants and their families are not lost to follow-up.

Objective 2.1 Implement effective tracking systems at all screening sites (including health departments and developmental clinic sites), assessment facilities and EI programs.

2.2 Develop software linkages for screening, assessment and intervention data to allow tracking in real time and active follow-up.

Goal 3 Ensure that the system meets the needs of infants, families and providers as well as state agencies and organizations.

Objective 3.1 Evaluate EHDI system satisfaction from the viewpoint of parents providers and partners.

3.2 Establish access, privacy, confidentiality processes and procedures.

3.3 Develop the ability to document language and other outcome measures.

Goal 4 Ensure that system changes are institutionalized and knowledge shared

Objective 4.1 Document processes appropriately.

4.1 Formalize reporting systems to ensure accountability.

4.2 Publish, present and share knowledge acquired through professional journals, conferences, internet and other opportunities.

Activities, timelines and responsibilities are delineated in Appendix E.

In the first year

• Review previous data-related grants relative to integration of public health databases
• Develop a plan specific to newborn hearing screening for data integration with other public health infant/newborn databases
• Explore the feasibility of including hearing screening information on the metabolic/endocrine screening forms to allow another opportunity for validating data

Efforts to link NM/ESP and birth records have already been initiated. The newborn hearing screening database is on the same server as NM/ESP to facilitate linkages with the Neometrics database, a proprietary system that is used to track NM/ESP. NM/ESP data is collected and stored at ADHS, Office of Women's and Children's Health. Vital records data is collected electronically and stored at another ADHS facility. UNHS data is collected from hospital screening sites and stored on the same server as the NM/ESP data.

Data elements currently being collected will be selected for determining a records matching strategy. A plan will be developed for collection of missing elements and integration or linking of data systems. Programming to automate linkages will take place in years 2-4. A pilot project would be developed and then, dependant on results would be expanded to multiple sites. Documentation will be developed to support policies related to access, confidentiality and use of information for aggregate reporting.

To Ensure Late Onset or Progressive Hearing Loss is detected Early

• Extend tracking beyond the newborn period
• Address late onset and progressive hearing loss risk factors in training and guidelines
• Educate providers, parents and the public about hearing loss

The Arizona EHDI Program is currently participating in several efforts to ensure that this purpose is accomplished, which will continue with existing funding. ADHS, Sensory Program partners with a cooperative extension program to provide a Train-The-Train Program (T3) for school and early childhood communities. A standardized curriculum is presented to screener to identify children at risk for hearing loss using pure-tones, OAEs and tympanometry. Information about risk factors for late onset and progressive hearing loss has recently been added to the curriculum. See Appendix G for a list of risk factors. T3 training is mandatory for all school hearing screening programs and is widely used by Head Start and day-care programs. The NTY program is also required to provide education to the community, medical professionals and others. A focus of the education program will be late onset and progressive hearing loss.

The screening program guidelines being developed through the EFAz will address the issue of follow up for late onset and/or progressive hearing loss. The Arizona Pediatric Audiology guidelines, already in place, also address late onset and/or progressive hearing loss. The MCHB grant year will involve implementing the guidelines. Late onset and progressive hearing losses are also being addressed through the Developmental clinics project. Data collection needs to address late identified and progressive hearing losses by allowing data to continue to be collected after the first six months of age. Proposed legislation requires all audiologists to report assessment of hearing loss through age 8. Other opportunities for assessment of late onset or progressive hearing loss will also be explored, such as Child-find, Head Start and Early Periodic Screening Detection and Intervention efforts through AHCCCS. This data will be evaluated in years 2-4 and integrated if possible.

The EFAz has published, and is in the process of distributing, a Medical Guide to Early Hearing Detection and Intervention. The guide is written for pediatricians, family practice physicians, neurologists, neonatologists, obstetricians, physician's with a pediatric subspecialty, physician's assistants, pediatric nurse practioners, agencies and individuals who provide health care to infants and their families. The purpose of this publication is to ensure that medical providers have easily accessible information on what to do with the infant and family at each stage of EHDI. Specific information on referrals and risk factors for late onset and progressive hearing loss are included. EFAz is also developing a website to disseminate information including the risk factors for late onset and progressive hearing loss.

Ensure that Infants and Their Families are Not Lost to Follow-up

In the first year:

• A transitional paper tracking system for assessment results will be developed with community providers, agencies, medical home and parent advisors.
• Reporting capability will be evaluated for the existing CRS, AzEIP and ASDB databases.
• Integration plans will be developed addressing timelines, security, and confidentiality.
• A plan will be developed to provide access to the data for providers with parental consent.

Screening

The screening tracking system will be expanded to include all screening hospitals. The tracking program will be built on the existing HI*Track screening tracking program. Funding from this proposal will increase the existing contract with the screening coordinator from 0.9 FTE to 1.0 FTE. The screening coordinator will work with NCHAM to support the existing hospital based screening programs and to increase the number of programs participating in the automated data collection efforts. Technical assistance will also address guidelines and data validity. Legislation is currently being proposed that would require all birthing sites to participate in data collection.

AzEHDI will to incorporate standardized data definitions and data elements into the new system where they are available. Minimal data elements are listed in Appendix F. Other national benchmarks will also be used, such as those developed by the JCIH in their 2000 position statement and those developed by the American Academy of Pediatrics in their 1999 guidelines. Arizona is also committed to modifying data collection plans to allow eventual sharing in a more extensive national database.

AzEHDI will participate in the development, distribution and implementation of hospital-based newborn hearing screening guidelines. These guidelines incorporate the collection of data with standardized data definitions, protocols and forms.

Assessment and Amplification

Data on assessment and amplification is currently collected at two agencies, ADHS and ASDB, in separate databases and individual files. ASDB collects data on both assessment and amplification. The ADHS CRS collects individual encounter data for reimbursement purposes. Neither system has reporting mechanisms in place, and neither is integrated into the screening data. Most initial assessment identifying a hearing loss takes place at the 13 sites performing frequency specific ABR. Five sites providing sedation capabilities are located at large birthing centers and would be the first sites to be included in linkages with assessment. The first year, an ad hoc committee of those five sites will be formed with facilitation from the DHS data manager and NTY program manager to determine what data elements should be collected and how. By the end of the first year, all five sites will be participating in either a paper, email or fax method of reporting information regarding children who are identified with a hearing loss between the ages of 0-8. Year 2 would include the remaining eight sites and data collection automation.

Many other sites provide behavioral assessment, hearing aid fitting and ongoing monitoring. Information from these sites will be included in future iterations of the data system by year 4. Information would include audiological information up to age eight. Long-term goals would be to monitor assessment information, including information on children who are either late identified or have progressive hearing loss.

Most of the data on children who have already been identified with a hearing loss will be found within the CRS database. More than 40% of all children age 0-21 who are identified with a significant hearing loss (bilateral or unilateral) will receive hearing aids, specialty medical services, and ongoing audiological monitoring through one of the four statewide contracted CRS sites. CRS has an extensive database that is linked to AHCCCS. This database is encounter based and has extensive information on each child, including concurrent conditions, diagnostic codes and the procedures completed at each visit.

A plan to query and link results to the newborn hearing screening database will be developed in the first year of the grant. Implementation of the linkages will be executed years 2-4. Execution will involve additional programming and data management support.

A freestanding data collection and query module will need to be developed to link community assessment sites to the state database. A committee of stakeholders will be developed to ensure that this assessment module will provide value not only to the state but also to the individual sites. Parents, Deaf or Hard of Hearing Consumers, medical home consultants and IHS will be represented among the stakeholders. Issues to be addressed include privacy, access, confidentiality and security of electronically transmitted data.

Early Intervention

Development of an integrated database will help ensure that no family is lost to follow-up. The expansion of the EI database and linkages to screening and assessment will also allow outcome measures to be analyzed and quality assurance measures to be implemented. Initial outcome measures to be assessed will include standardized language assessments at the time of each Individual Family Service Plan. ASDB collection collects some data on individual children in a centralized state-wide database. This database will be expanded to include additional outcome data and linked to the screening and assessment databases. Expansion of the database will include encounter data and the results of standardized evaluations. The planning is anticipated to be completed in the first year with implementation the second through fourth years. Implementation will be iterative by region with an initial pilot project in a selected area.

Linkages to screening and assessment database at DHS will be completed in stages. Initial stages will include matching definitions and data items. This will be completed the first year. Second stage will include pilot data matching. Third stage will involve developing software, policies and procedures for matching and sharing data. The final stage to be completed by the fourth year will involve development and implementation of an interactive data system allowing early interventionists to access data from screening, assessment, amplification and EI services.

Ensure the Resulting System Meets Identified Needs

• Planning will completed that will include participation from parents, providers, agencies
• Participation of ethnic minorities, Indian Health Services and other traditionally under-represented groups will be recruited
• Planning will address issues of confidentiality and parental consent
• Ensuring collection of outcome measures such as language acquisition will be included in planning efforts

Ensure Changes are Institutionalized and Knowledge is Shared

• Initiate appropriate documentation of planning processes
• Publish and present information on system development

IV. Collaborative Efforts

The AzEDHI Program is a collaborative effort among State agencies, public and private partners. A description of each of the partners is included in the text below. Collaboration with the MCHB UNHS grant will also be critical. The MCHB grant focuses on improving service infrastructure while this proposal focuses on tracking and surveillance. The two projects together will leverage efforts to provide a complete system of EHDI. Letters of collaboration and support are included in appendix M

Partners

Most of the partners have worked together successfully to bring the state to their current level of UNHS. Current partners include several agencies, hospitals and organizations.

AzEIP A multi-agency collaborative under the DES that is responsible for Part C of the IDEA. AzEIP has contracts with statewide Interim Service Coordinators and umbrella responsibility for EI services in Arizona. They will participate in monthly meetings to coordinate grant activities, evaluation and strategic planning.

ASDB Early Childhood Family Education Program (ECFEP) ASDB is the lead agency under the AzEIP, part C of IDEA, for providing EI services for children who are Deaf, Hard of Hearing and/or Visually Impaired. The ECFEP provides home based EI services to children in all areas of the state through parent advisors. The ECFEP will participate in this proposal by commitment of a half time staff person to work on integration of data systems between newborn hearing screening, assessment and EI services.

Arizona Department of Health Services

Office of Women's and Children's Health (OWCH) OWCH is the lead for funding under the MCHB Block Grant. Programs under the direction of this Office include the state-funded NM/ESP and the NTY program. NTY is the lead on this proposal and will be responsible for all proposal activities, subcontracts and documentation. NTY will continue to maintain the screening database and will coordinate efforts to link it with other public health databases and with the assessment and EI databases. A 0.8 FTE data manager will be hired to coordinate data integration activities and will report to the NTY Program Manager.

Office for Children with Special Health Care Needs (OCSHCN) CRS is a state funded program for children with qualifying conditions (including hearing loss and metabolic/endocrine disorders). CRS provides assessment, amplification and specialty medical/nutritional services in regional center-based clinics. CRS has ongoing encounter data on approximately 40% of all children who are Deaf or Hard of Hearing. Their role in this proposal will include dedication of a 0.5 FTE staff person to actively work on integrating the data collection efforts of CRS with the developing newborn hearing screening database. The community development section of OCSHCN participates in AzEIP and supports screening and case management for children who are developmentally delayed through developmental clinics.

National Center for Hearing Assessment and Management (NCHAM) NCHAM is based at Utah State University and has a long history of involvement in newborn hearing screening. NCHAM has partnered with Arizona to provide a data system for the newborn hearing screening program. NCHAM will continue to work with NTY to support the existing hearing screening database and transition the state to a Windows version of the software.

Arizona's Hospitals The birthing hospitals have shown a strong interest and commitment in making UNHS a reality in Arizona without a legislative mandate or a source of reimbursement. They continue to demonstrate their commitment to tracking and process improvement issues. Hospitals will implement tracking systems and participate in planning efforts to ensure that their infants return for follow-up, out-patient screening and assessment.

The EAR Foundation of Arizona EFAz is a private foundation designated as a 501(c)(3) organization. EFAz has been involved in collaborative projects with the NTY funded by SLHI to provide equipment and technical assistance to hospitals. EFAz will be an active partner through a contract with NTY funded by the MCHB UNHS grant to provide technical assistance and project coordination consulting. The existing contract will be expanded to include participation on task forces and committees related to this proposal and to assist hospitals, audiologists and early interventionists in implementing tracking and surveillance programs.

Parents RAISING Special Kids (RSK) is a parent advocacy group that serves central and northern Arizona. RSK has a contract with NTY, funded through the MCHB, UNHS grant to provide consultation on infrastructure development from a parent's perspective. The contract will be expanded to include participation on task forces associated with this proposal.

Indian Health Services Arizona consists of two regional service units of the IHS. The ADHS Director meets with the IHS medical directors on a regular schedule. Issue related to this proposal will be addressed either directly with the responsible service unit or through the medical director's meeting. ADHS employee Michael Allison serves as the Native American Liaison. IHS will participate at all levels of planning and implementation.

MCHB-UNHS Grant

In March 2001, the NTY program was awarded a four year grant through MCHB to develop and improve UNHS programs in the state. See Appendix I for details of the grant Although the MCHB grant deals primarily with service systems related to UNHS and this proposal deals primarily with data systems, there is potential for a more complete, functional project to result. Most of the staff, agencies and organizations will be involved in both of the projects. Currently the MCHB grant is funding a contract with a 0.2 FTE data position. If this proposal is funded, that position will be increased to full-time not only to manage the current screening data system but also to work on developing a new EHDI system. The EHDI data system will be integrated with many other data sources extending from screening to assessment and EI services. This position will also be responsible for quality assurance reports, statistical analysis and developing a system that can allow active participation by providers and aggregate reports.

V. Evaluation Plan

The AzEHDI project will be evaluated systematically through monthly, quarterly and annual measures. The measures used to assess progress will be the goals and objectives and the key process measures listed below. The core leadership team responsible for the project includes: Lou Ryan, Program Manager, NTY; Susan Burke, Office Chief, OCSHCN; Earlene Dykes, ASDB, Representative on AzEIP Interagency Coordinating Council.

Monthly reports by the leadership team will be made to the AzEHDI Ad Hoc group. The group will review progress on the goals and objectives identified in the previous section no less than quarterly. Timeliness, completeness and successful achievement of the objectives also will be measured and assessed. The leadership team will meet and develop a plan to address barriers to progress and to reevaluate goals and objectives as needed.

Key indicators will be measured against both internal and external benchmarks to ensure quality programs and will lead to process improvement. Key indicators are monitored for individual programs and aggregate statewide data. Indicators are included in the following table:

• Screening Assessment Early Intervention
• # and % of hospitals screening > 95% of all births # and % of children receiving assessment within three months of birth # and % of children enrolled in EI programs by six months of age
• # and % of babies screened at birth and by one month of age # and % of assessment sites participating in data collection # and % of EI programs participating in state database
• # and % of hospitals submitting data each month # and % of infants with assessment data in the state database # and %of infants enrolled in EI in state database
• # and % of babies in the state database False positive rate from screening to assessment Average age of enrollment
• Refer rate from initial screen Average age of assessment
• Refer rate from the outpatient screen # and % of late onset or progressive losses
• Automated linkages to other public health databases Automated linkages between screening and assessment Automated linkages between screening, assmt and intervention
• Plan in place for data integration Documentation of software linkages Documentation of software linkages
• Plan in place for epidemiological surveillance
• Survey tools developed, administered and assessed
• Presentations and manuscripts completed and submitted for publication

The core leadership team for the AzEHDI project has extensive background and experience that makes them uniquely qualified to lead this project. The leadership team members are also in positions within agencies and organizations that will allow them to make the decisions and modifications necessary to ensure the success of the project. Their primary role is to plan, develop systems, oversee evaluation, facilitate partnerships and provide direction for efforts. Additional roles for each partner are listed in the section on Collaboration. See appendix L for biographical sketches..

Lead agency on the project is the ADHS, NTY program. Lou Ryan is the Sensory program manager in charge of daily operations of the newborn hearing screening and the school hearing and vision screening programs. She is also the lead on the MCHB UNHS program grant. Her role will be to oversee all contracts, submit reports and manage the budget. See Section IV for information on collaborative partners.

The Sensory Program contracts with the following consultants:

Lylis Olsen, Audiologist, Project Coordinator funded through the MCHB grant

Randi Winston, Audiologist, Screening Coordinator funded through the MCHB grant

It is anticipated that staff will be hired to complete portions of this project on a limited basis. A full time data manager would be hired for the NTY program with combined funds from the MCHB grant and this cooperative agreement. CRS and ASDB would contract with existing programming consultants and information technology staff to provide the expertise necessary to complete the linkages. CRS currently funds five programming positions within the information technology department. No existing funding sources will be supplanted.

VII. Organizational Structure and Facilities

Organizational Structure

See organizational charts in appendix F. See Program descriptions in section I and IV.

Facilities

Data will be housed at the ADHS, OWCH, NM/ESP which has a dedicated server. Tape back ups are done daily and stored in a secure and disaster safe environment. Data generated in this program will be treated with all of the security and confidentiality requirements of any public health data. Consultants, including support staff will work where needed to complete the project. NM/ESP, OCSHCN and NTY programs are housed in Phoenix at 35 Avenue and Thomas. ASDB is based out of Tucson, but has offices in Phoenix and Flagstaff.

VIII. Human Subjects Review

The proposed data system will be brought to the Human Subjects Review Team (HSRT) while in its early development stages. The HSRT will be responsible for addressing any potential conflict or concerns about potential use of the data being collected. Ruthann Smejkal, PhD, NM/ESP manager also serves on the HRST. Primarily existing data on human subjects will be collected in a coordinated and shared manner. Additional data will be collected as part of a survey process. Surveys will be reviewed by the HSRT before distribution. Surveys will be voluntary and will include information on how the data is to be used so that participants can make an informed decision on participation.

The project will be conducted subject to the approval of relevant department committees and policies including review by the ADHS HSRT prior to implementation. When the project involves IHS, the IHS institutional review committee will be asked to review the project. Tribal governments will also be asked to approve, if appropriate, any portion of the project applicable.