1. The Purpose of the Project
The purpose of this proposed project is to integrate the components of the existing AzEHDI related services, to identify areas of challenge and to implement processes and programs to address those areas of need already identified.
Challenges
Arizona has done well at initiating screening programs voluntarily. Presently, approximately 95% of all babies are born in Hospitals with Universal Newborn Hearing Screening (UNHS) programs. It is now time to assess the need for supportive legislation, sharing of information and a process to assure active follow-up. The challenge facing Arizona now relates to assuring that the children who are screened at birth make it through a fragmented system. In addition to the need for integration between the components of the system, improvements are needed within the Screening, Assessment and Early Intervention. Further information on Challenges can be found in section 6 Needs Assessment. The majority of programs have been implemented within the past two years and are vulnerable and in need of significant technical assistance. Protocols/guidelines have not been standardized and guidelines (in process) will need to be implemented. Not all hospital programs provide adequate information to the Medical Home or to parents in a family friendly and culturally competent way. Information on how many babies make it through the process is limited. It is estimated that 25-50% of babies referred from the inpatient screen do not return.
Assessment Services also face significant challenges. Diagnostic services are not available in all communities and not all sites providing pediatric audiology services have adequate training or equipment. It is difficult to document the status of individual infants as they progress from screening, to diagnosis, to Early Intervention (EI).
In EI there is a need to build capacity to serve increasing caseloads of children under the age of 1 year. Parent-to-parent support opportunities need to be planned and implemented.. Inter-Agency confidentiality and information sharing issues need to be resolved to allow programs to identify the status of each child through screening, diagnosis, and intervention, including the ability to measure preschool readiness and intervention outcomes.
Rationale and evidence supporting the proposed intervention
The collaborative AzEHDI team also recognizes the need to establish more consistent guidelines and to put into place legislation. Legislation will assure that programs are sustained and that there are the policies and programs in place to provide follow-up. This will assure that children who are Deaf or Hard of Hearing have the opportunity to enter school with the skills and experiences necessary to succeed.
Arizona has shown an amazing capacity to achieve success in the AzEHDI process through voluntary cooperation and collaboration. Despite lack of funding, staffing or legislation, approximately 95% of all infants are born in hospitals with Universal Newborn Hearing Screening (UNHS) programs. This project will allow the funding to identify and address the gaps and challenges in Arizona's present AzEHDI system. Most of the strategies to achieve the goals of the project involve collaborative, community-based efforts to find unique solutions. The strategies will include:
Describe the anticipated benefit in terms of purpose and goals
The benefit of the AzEHDI project will be to assure that early identification and intervention is a reality for all children with significant hearing loss. The ultimate benefit will be the assurance that children are academically, socially and emotionally ready to enter school and succeed.
It is feasible that by the end of this project, all birthing hospitals would offer UNHS and follow accepted guidelines. It is also anticipated that by the end of this project, the systems will be in place to allow an agency to provide active follow-up to assure that no children are lost, assessment is completed by three months and enrollment in early intervention occurs by six months. Services will be accessible and providers will have the skills, information, materials and equipment to provide appropriate services for infants. Services will also meet the needs of parents, will value and support the diversity of culture, language and experience in communities and be provided in the context of a medical home.
2. Organizational Experience and Capacity
The lead agency on the Arizona Early Hearing Detection and Intervention (AzEHDI) project will be the Arizona Department of Health Services (ADHS). Participants in the project's core leadership team have extensive background and experience that makes them uniquely qualified to direct this project. Their positions of leadership within agencies and organizations will allow them to make the decisions and modifications necessary to assure the success of the project. Rosters of the NTY Advisory board and the Ad Hoc Inter-Agency Committee are included in appendices A and B.
ADHS
Several statewide programs, based in Phoenix, within the ADHS will participate in the AzEHDI project, including:
Project Coordinator and Consultants
AzEHDI Project Coordinator. Lylis Olsen will serve as the project coordinator. She has been involved in the statewide newborn hearing screening program as the state coordinator for the past six years. As a member of the Directors of Speech and Hearing Programs in State Health and Welfare Agencies, she was an active participant in developing the data definitions for a national newborn hearing screening database through a committee facilitated by the Centers for Disease Control and Prevention. Lylis has also worked with the National Center for Hearing Assessment and Management on the development of a state-level HI*Track data management and tracking system. She has worked extensively with assessment and intervention providers to develop guidelines for pediatric audiology services and was instrumental in obtaining funding for the hospital and developmental centers screening programs and the HEAR for Kids project. Lylis manages the HEAR for kids project for the EAR Foundation of Arizona.
UNHS Program Coordinator . Randi Winston has been the screening coordinator for the EAR Foundation of Arizona for the past three years. She has assisted more than 25 hospitals to successfully initiate UNHS programs through grant funding of equipment and technical assistance. As a key liaison with hospitals, she has been instrumental in training screening personnel, helping to establish protocols and informed consent procedures, select equipment, install and use data management and tracking software,. Randi has also been selected by the National Technical Assistance Center (funded by MCHB) to serve as a Network Technical Advisor in MCHB Region IX.
Medial Home Consultant. David Hirsch, M.D., FAAA, is a nationally recognized authority on Children with Special Health Care Needs and has been instrumental in developing the Medical Home Model. He is also the head of a large Pediatric practice that serves as the medical home to approximately 50% of the children with special health care needs in the Maricopa County area. As an influential member of the medical community, Dr. Hirsch will be a valuable consultant to assure the success of this project in facilitating the medical home of children who are Deaf or Hard of Hearing.
Parent Advocacy Consultant. Joyce Millard is the executive director of a parent advocacy group called Raising Special Kids. She is also the mother of a son with special health care needs. Ms Millard will provide input on all aspects of the AzEHDI program to assure that the family focus and support is maintained.
3. Administration Structure
ADHS
The lead agency for this grant proposal is the ADHS (Catherine Eden, Director), Division of Public Health (Rose Connor, Assistant Director), Bureau of Community and Family Health Services (Elsie Eyer, Bureau Chief), Office of Women's and Children's Health (Jeanette Shea-Ramirez, Chief).
The Office of Women's and Children's Health and Office for Children with Special Health Care needs are the recipients of the Title V MCHB block grant. Activities of this grant will be coordinated with other state and block grant activities. Organizational charts are located in appendix C.
Other Agencies
ASDB. ASDB is the designated agency for provision of EI to children who are Deaf/Hard of Hearing or visually impaired, age 0-3 years under the Individuals with Disabilities Education Act (IDEA) part C. IDEA is administered under a five-agency umbrella organization called AzEIP. ASDB Early Childhood, Family Education and Outreach Program is a statewide system of EI for families with children who are Deaf or Hard of Hearing. The state is divided into North, Central and Southern regions for service coordination.
AzEIP. AzEIP Inter-Agency Coordinating Council consists of representatives of five agencies including the Department of Health Services, Department of Economic Security, Department of Education, ASDB and the Arizona Health Care Cost Containment System (Medicaid Waiver Program). Regional teams oversee services and resolve local issues. AzEIP contracts with local providers for Interim Service Coordination (ISC).
University Of Arizona One of the top Speech and Hearing Departments in the county is found at the U of A in Tucson. This department has been a long-time advocate of pediatric audiology and offers some of the best training opportunities available.
4. Available Resources
Staff resources were described in Section 2-- Organizational Experience and Capacity
Facilities
The Bureau of Community and Family Services is in the process of relocating to a new building. The Office of Women's and Children's Health Service which includes the NTY Program, Newborn Metabolic/Endocrine Screening and Child Health is already located here. The Office for Children with Special Health Care needs, including CRS, will move to the same location in December. The Medical Director and Epidemiologist will also be housed in this location. Facilities are adequate to provide for any standard office equipment, computers or space that might be needed for this project.
Advisory Committee, Enabling Legislation, and Existing Services and Support NTY Program.
The NTY program was created in 1987 with 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. The Advisory Committee is appointed by the Director of ADHS and includes representation from the following groups/professions:
A parent of a child who is hard of hearing is also included in the meetings. The Advisory Committee meets quarterly and meetings are open to the public. See Appendix A for a list of the members. NTY also has responsibility for a education plan for health care providers, the public and parents.
Ad Hoc Inter-Agency Committee.
See Appendix B for a list of the member and agencies represented in the Ad Hoc Inter-Agency Committee. This group was formed to document the AzEHDI processes in Arizona and to identify barriers and solutions to barriers from a state inter-agency perspective.
Linkage with Other Projects.
See Section 7-Collaboration and Coordination, for description of services being provided through the SPRANS grant, CDC Grant, University of Arizona Pediatric Audiology Education Plans, Raising Special Kids, Arizona Pediatrics Medical Home Project, and CRS.
National Technical Assistance Center Resources.
Since 1993, Arizona has worked closely with the National Center for Hearing Assessment and Management (NCHAM). NCHAM currently serves as MCHB's National Technical Assistance Center with a mission to help States in all aspects of AzEHDI implementation. In addition to the general assistance available to states through the Center, Randi Winston was also selected by the Center to serve as a Network Technical Advisor in MCHB Region IX. Her consulting position with the National Center will ensure timely access to a broad range of information and materials being developed by other states and at the national level.
Data Management and Tracking Resources
ADHS currently contracts with NCHAM for maintenance and support of the HI*TRACK data management and tracking system. Most newborn hearing screening equipment interfaces with HI*Track to allow automated collection of screening data and a separate interface is provided to hospitals that use handheld equipment. Approximately 32 Arizona hospitals are using the HI*Track software to track screening results, generate physician and parent letters (in English and Spanish), make referrals to follow-up agencies, and monitor program quality. ADHS pays the software licensing fees for hospitals that agree to participate by sending data to the state on a monthly basis. As part of the software agreement, NCHAM provides a technical assistance hotline during regular business hours and also provides training and support to hospital-based screening programs. Plans are being made to transfer the state Newborn Hearing Screening data to the Newborn Metabolic/Endocrine Screening Program dedicated server where data is stored in a secure and disaster-safe environment and tape back ups are completed daily. This would allow for easier integration of data and follow-up services.
University of Arizona (UofA)
UofA Speech and Hearing Department has presented targeted workshops to upgrade the skills of Pediatric Audiologists. These workshops have been partially funded through the ADHS to allow audiologists to obtain new skills related to working with newborns. UofA has a history of providing leadership in the area of Pediatric Audiology.
5. Identification of the Target Population and Service Availability
Demographics of Arizona Births
Arizona had 80,505 live births in 1999. More than 50,000 (51,154 in 1998) were born in Maricopa County, encompassing Phoenix and surrounding suburban areas. Metropolitan Phoenix is the sixth largest metro area in the United States. In contrast, Arizona also has the largest area of the four state Navajo Nation. This vast area is sparsely populated and remote. Distance, primitive roads, winter weather conditions, plus lack of access to telephones, transportation, and providers pose substantial barriers to services.
In 1998 41.5% of all births were covered under the Arizona Health Care Cost Containment System (Medicaid waiver program). Arizona also consistently ranks as one of the worst states for numbers of uninsured children.
Approximately 40% of all babies born in 1998 were Hispanic with 14% combined Black, Asian and Native American. A unknown but significant number of children are born into monolingual Spanish speaking homes.
Target Population
Initial inpatient screening targets all births in Arizona. Outpatient screening targets the ~5% of newborns who are referred from the initial screen. Assessment targets the ~1% of children referring for further evaluation from the outpatient screen. Approximately 250 children are expected to be identified as Deaf or Hard of Hearing in Arizona each year. This project not only targets those children but also their families, their medical home, the audiologists and early interventionists that serve them. Special consideration will be given to those families who have previously been identified as having additional barriers to accessing services due to language, socio-economic status or location. Members of the Hispanic community will be recruited and materials distributed in English and Spanish. EI success in collaborating with Hispanic and Native American populations and finding community based solution will be expanded.
Service availability
Inpatient Screening.
Of the 51 birthing hospitals in Arizona, 45 have UNHS programs. These programs represent more than 95% of all births in Arizona. Two hospitals have plans for implementation within the next year. The remaining four hospitals include two small community hospitals (~100 births/year) one urban military hospital (~400 births/year) and one remote Indian Health Services hospital (~100 births/year). Hospitals vary in the maturity and effectiveness of their programs with only 4 programs starting prior to 1995, 34 starting between 1995 and 1999, and 6 being implemented within the past year. The NTY program provides informational brochures in English and Spanish as an effort to educate parents.
Outpatient screening.
37 of the 45 screening programs provide outpatient screening. Outpatient screening services are also available at 11 state supported developmental clinic sites located in communities spread throughout the state. The developmental clinics project started in September 2000 and will be evaluated in 2001 for possible expansion to include the use of portable screening equipment on home assessment visits. Brochures are also available through NTY to be provided to parents after the outpatient screen.
Audiological Assessment.
Pediatric audiological assessment requires specialized equipment and expertise primarily available in urban areas. Appendix D lists providers and locations. A collaborative pilot projected is scheduled to be implemented in January 2001 in Northern Arizona. ASDB, Parent Outreach and Family Education program has purchased portable ABR equipment with the help of a community foundation. The equipment is to be used jointly by ASDB and CRS audiologists to provide ABR assessments beginning in 4 rural communities, in conjunction with 1 community hospital, 2 IHS clinics and 1 community health center. This project was initiated in response to needs identified by the newborn hearing screening programs in these communities and may be expanded to other communities based on need. A Parent information guide is available to parents and professionals from Raising Special Kids on important things to know after a child is diagnosed as Deaf or Hard of Hearing.
Early Intervention Services.
AzEIP is the umbrella organization for the five agencies providing services to children with special needs from 0-3 years of age. ASDB is the designated agency providing early intervention and family education for children who are identified as Deaf or Hard of Hearing. Services are provided under the Ski Hi home programming model that emphasizes family support in natural environments. ASDB has been a leader in providing culturally competent services and parent advisors are recruited from diverse communities and trained in ethnic, cultural and linguistic diversity. Spanish and Navajo speaking parent advisors are available. Efforts are made to link families to other families with similar experiences. Parents are given binders to hold all of the educational materials provided throughout the enrollment in EI services.
Medical Home.
Primary Care Providers are most accessible in the urban areas but there is a chronic shortage of providers in the rural and remote areas of the state. Recruitment and incentive programs exist within ADHS to attract and retain providers in these areas. Specialty medical services are primarily available through the CRS contracted sites in Phoenix, Tucson, Yuma and Flagstaff. Each site participates in a limited number of field clinics each year. Approximately half of all children who are Deaf or Hard of Hearing qualify for full coverage through CRS. Recent changes in CRS policy will also allow access to all children on a fee for service basis. A project, initiated by the EAR Foundation of Arizona will provide a guide to EHDI to all physicians. The guide lists resources and follows the flowchart developed by the AdHoc Inter-Agency EHDI committee.
AzEHDI Processes
The flowcharts found in appendix E-G demonstrate the existing process as identified by the Ad Hoc Inter-Agency Committee.
Needs Assessment
Needs assessment data has been obtained over the past year through surveys and interviews with hospital-based screening programs, audiologists, physicians, parents and early intervention providers. In addition to the needs identified in screening assessment and early intervention, there are needs associated with the fragmentation of services. Active follow-up that would allow centralized understanding of how an individual child is progressing through the system of screening, assessment and EI is needed.
A. Screening
Summary of Screening Strengths
Summary of Screening Needs
New Programs.
The transition to UNHS in Arizona has taken place primarily over the past four years. In 1995, only 3 hospitals had UNHS programs. In 1997, the first of three grants were awarded to the EAR Foundation of Arizona in partnership with the ADHS' NTY Program. Grants from St. Luke's Health Initiatives (SLHI) are intended to change systems of care in innovative ways. The funds were used to acquire equipment and provide technical assistance to hospitals. More than 25 hospitals initiated screening programs as a result of the initiative. The SLHI has awarded one final grant for technical assistance from July 1, 2000 to June 30, 2001 and have indicated that they will not consider further requests.
Approximately 32 hospitals are now using the HI*Track software to track screening results, generate physician and parent letters (in English and Spanish), make referrals, monitor program quality, and provide data to the state. This works well for the initial screen but data collection from the outpatient screen has been inconsistent. State data shows that new programs continue to need significant amounts of assistance to stabilize refer rates, to assure those newborn identified with a need for further evaluation are linked to their medical home, and that information is provided to the medical home and parents in a way that increases follow-up.
Protocols/guidelines.
Hospital-based newborn hearing screening programs have been provided with information, training and onsite assistance. Participation by hospitals is voluntary and there are no official guidelines for screening. A component of the final grant from SLHI, providing technical support to hospital screening programs also establishes a committee to draft and publish voluntary guidelines for screening programs. These guidelines would promote minimal standards for screening protocols such as:
The guidelines are anticipated to be ready for publication by the end of the current SLHI grant in 2001. Technical assistance will be needed to implement guidelines in the various screening programs across the state.
Medical Home/Parent Information.
Based on data collected from the hospitals that track inpatient and outpatient screening, it appears evident that children are lost between the first and second screen. Incomplete data suggests that between 25-50% of all infants do not return to the original birthing hospital after referring from the initial inpatient screen. Interviews with physicians and screening programs reveal that this is caused by a complex set of factors. Efforts need to be made to facilitate communication between the screening program, the medical home and parents. Communication also needs to accommodate language and cultural difference. Financial and managed care barriers need to be removed. . A resolution of these issues will result in an increased enrollment of children in a medical home.
B. Audiologic Assessment Services
Summary of Assessment Strengths
Summary of Assessment Needs
Availability of Diagnostic Services.
In Maricopa County, audiologists at nine sites provide diagnostic Auditory Brainstem Response (ABR) testing. Seven of the nine sites can do bone conducted and frequency-specific ABRs. Six sites can do conscious sedation procedures. All sites have agreed to follow the Arizona Pediatric Audiology Guidelines. The guidelines suggest screening, assessment and fitting criteria to be used with children age 0-3 years. Statewide, an additional four sites offer ABR, three sites have sedation available and three sites can do bone conducted and frequency specific ABRs. Grant funding has recently been obtained by ASDB to equip existing staff in Northern Arizona with a portable ABR unit. This would primarily benefit the remote areas of the Navajo Nation and rural Northern Arizona. The feasibility of expanding these services into other areas needs to be addressed.
Upgrading the Skills of Pediatric Audiologists
Behavioral assessment is more broadly available, although there are concerns about the availability of staff trained specifically in assessing newborns. The University of Arizona with funding from the NTY program has sponsored pediatric audiology workshops for three years specifically targeting issues emerging from the newborn hearing screening programs. Workshops have included frequency specific ABR, fitting newborns with amplification, and auditory neuropathy.
Funding for assessment includes the Arizona Health Care Cost Containment System (AHCCCS) which is Arizona's Medicaid waiver program, CRS for children who are not eligible for AHCCCS but meet financial criteria and private insurance and Indian Health Services. The EAR Foundation of Arizona manages a project called HEAR for Kids that provides funding for audiological and medical assessment for children who are referred from a screening and have no other resources. HEAR for Kids provides a six-month loaner pair of advanced technology hearing aids and the first set of earmolds for each child identified with a hearing loss. Hearing aids are ordered and fit by the audiologist identifying the hearing loss or through the CRS audiologist. HEAR for Kids also funds permanent hearing aids, earmolds and audiological services for children meeting financial eligibility who do not qualify for other sources of funding such as CRS, Indian Health Services or private insurance.
Documenting infant status through the assessment process.
Although several hospitals with close ties to audiologists are successfully using the software to track infants through the screening and diagnostic process, lack of reliable data statewide has made it difficult to assess how many infants return for the assessment by 3 months of age. It is vital that a protocol be implemented to coordinate the exchange of information, centralize records, assure the medical home, and follow children from screening through assessment to early intervention.
C. Early Intervention (EI) Services
Summary of Early Intervention Strengths
Summary of Early Intervention Needs
Capacity.
ASDB is the designated agency for part C funds for early intervention for children who are Deaf and/or Blind in Arizona, age 0-3 years. Early intervention services are coordinated statewide through the statewide Childhood and Family Education Program. Early intervention 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 to all families statewide at no cost to the family. In the Phoenix area (Maricopa County) and Tucson, center based toddler and preschool programs are available.
The Early Childhood Family Education in Maricopa County contracts through Arizona State University for Pediatric Audiology services. A similar contract through the University of Arizona is in place for Tucson. In Northern Arizona, a pediatric audiologist is directly employed by ASDB.
In 1999, 135 families were served in Maricopa County and 302 families statewide through the Early Childhood Family Education program. Hospital-based UNHS programs have already had an impact on early intervention services and it is anticipated that the caseloads will continue to increase for the next three years. Now children who are identified spend an average of 2.5 or more years in the program compared to an average of less than a year in the past.
Two privately funded programs also serve the population of children who are deaf or hard of hearing. Desert Voices is a private oral school that recently started a program for children age 0-3 years.. Arizona Hearing Resources is a privately funded program providing auditory-verbal instruction..
Parent-to-parent support.
Currently ASDB has several informal opportunities for parent-to-parent support. Sign Language classes, toddler and preschool groups and direct connections to similar families, arranged by the coordinators have been the primary mechanism by which parents interact. In Northern Arizona a total of 4 parents attended three parent to parent support group meetings. In Southern Arizona, it is unknown exactly how many parents attended meetings. Central Arizona, with the largest case load had only one group meeting with three parents attending.
Documenting child status through the early intervention process.
At this time, the effectiveness of screening programs relies on the ability of screening programs, the medical home and audiologists to assure that infants are enrolled in early intervention services by 6 months of age. Issues of inter-agency confidentiality need to be resolved and a formal mechanism agreed upon to assure that child status can be documented and more comprehensive follow-up activities initiated and maintained. Although the caseloads for early intervention services have increased dramatically (>130%), children are still being identified at 1, 2 and 3 years of age.
7. Collaboration and Coordination
The AzEDHI Program is a collaborative effort among multiple state agencies and public and private partners. Many of the partners have worked together successfully to bring the state to their current level of UNHS. This project will also require collaboration at a new level of involvement, bringing in additional partners.
AzEIP
A multi-agency collaboration under the Department of Economic Security is responsible for Part C of the Individuals with Disabilities Education Act. Agencies include the ADHS and ASDB. ASDB is the lead agency under AzEIP for providing early intervention services for children who are Deaf, Hard of Hearing and/or Visually Impaired.
ADHS, OWCH and OCSHCN
OWCH is the lead for funding under the MCHB Block Grant. Programs under the direction of this office include the state funded newborn metabolic/endocrine screening program and the NTY program. NTY is responsible for the newborn hearing screening database. The NTY advisory board also involves the collaborative efforts of neonatology, neurology, pediatric medicine, otolaryngology nursing, audiology, hearing aid dispensing, and representative staff from the Department of Education and ASDB. NTY also has responsibility for educating the public, health professionals and parents. Efforts have included brochures, posters and stickers in English and Spanish. They also have produced two educational videos.
CRS is a state funded program for children with qualifying conditions (including hearing loss and metabolic/endocrine disorders). They provide assessment, amplification and specialty medical/nutritional services in regional center-based clinics.
Private and Public Providers
SBIR grantee.
The company awarded the SBIR grant is a privately held company that specializes in the development of methodologies to enable health programs to better use emerging technology. They have expertise in bringing together public and private entities to collaborate on public health issues, particularly in the area of data.
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. They have partnered with Arizona to provide a data system for the newborn hearing screening program and provide technical assistance on an ongoing basis for all aspects of the AzEHDI program. The screening coordinator also works for NCHAM to provide technical assistance to the MCHB Region IX, including Arizona, Nevada and California.
Arizona's Hospitals.
Without a legislative mandate or a source of reimbursement, the birthing hospitals have shown a strong interest and commitment in making UNHS a reality in Arizona. They continue to demonstrate their commitment to tracking and process improvement issues. The screening coordinator will continue to serve as the liaison between the hospital screening programs and the AzEHDI project.
EAR Foundation.
The EAR Foundation of Arizona is a non-profit (501(c)(3) designated) foundation. The EAR Foundation of Arizona is a local affiliate of the National EAR Foundation based in Nashville Tennessee. Projects have included three newborn hearing screening implementation grants from St. Luke's Health Initiatives, a research study into the use of otoacoustic emissions for screening school aged children and a project to equip 11 developmental clinics with screening equipment. An ongoing project called "HEAR for Kids", provides loaner and permanent hearing aids and pays for assessment for children with no other financial resources.
Current Projects
Two current grant funded initiatives are in process, the SPRANS grant and the SBIR grant. Both involve planning and feasibility studies for integration of newborn/infant public health databases.
The SPRANS projected completion date is 2001 and will document the structure of the existing newborn/infant public health databases and the barriers to integration and linkages between the systems. It will also propose a mechanism by which the data may be shared. The SBIR grant addresses newborn hearing screening programs. It is anticipated that the information from the SBIR grant will enable a plan to be developed that is specific to the NCHAM HI*Track/HI*Data software. The AzEHDI project coordinator is on the SPRANS team and newborn hearing screening is one of the data bases being considered for integration in this planning phase. Communication will be through this key contact.
The SBIR grant is looking specifically at how the newborn hearing screening program (primarily in Utah) might link with key databases such as vital records, immunization and newborn metabolic/endocrine screening. Arizona, as part of this grant, is also participating in the beta testing of software that will be an important piece of the linking process. The AzEHDI project coordinator also consults with the SBIR grantee to assure that efforts continue to be coordinated.
The EAR Foundation of Arizona (EFAz) has been a very active partner in the past with ADHS in implementing newborn hearing screening programs. EFAz is halfway through their last year of support for assisting in hospitals initiating newborn hearing screening programs. Their source of funding for this project has confirmed that, although they recognize the need, future funds will not be awarded in the area of providing technical assistance to newborn hearing screening programs. In this final year, voluntary guidelines for the screening programs will be published but not implemented.
The second EAR Foundation of Arizona project will enhance the ability to assure that the outpatient screening is accomplished. Through this project, statewide developmental clinics associated with the Office of Women's and Children's Health, Newborn Intensive Care follow-up program will be equipped to provide otoacoustic emissions and tympanometry screening. The third project is the ongoing HEAR for Kids that provides funding for assessment and amplification. The AzEHDI Project Coordinator also manages the HEAR for Kids Project. The Screening Coordinator has worked on the previous implementation grants through EFAz.
Medical Home Project
David Hirsch, MD, FAAA, through the Arizona Pediatrics (AP) practice has a medical home project grant. AP sees approximately 50% of all children with special health care needs in Maricopa County (approximately 60% of the population of Arizona resides in the county). The focus of their current grant is to promote parents as partners through education. The AzEHDI project would contract with Dr. Hirsch to provide expertise on Medical Home.
Raising Special Kids
Raising Special Kids (formerly Pilot Parent Partnership) is a Phoenix-based parent advocacy group. One of their current projects is developing a parent resource guide for families with children who are Deaf or Hard of Hearing. The AzEHDI project would contract with Raising Special Kids to provide expertise on parent involvement on all aspects of the project.
Summary of Collaboration
The AzEHDI project involves a large number of stakeholders and collaborators. The complexity of dealing with a diverse group of multiple agencies public and private entities requires special coordination. Arizona has been successful in its voluntary efforts so far because of the ability to foster that cooperative collaboration. It will be the role of the Project Coordinator to continue to facilitate relationships toward a common goal of early hearing detection and intervention. The Project coordinator will specifically report to the Office of Women's and Children's Health, NTY Program Manager but will be responsible to the entire group of collaborators for the project.
8. Goals and Objectives
All birthing hospitals will offer UNHS using Arizona guidelines.
Objectives: Technical Support will be provided for all birthing hospitals in Arizona
Guidelines will be distributed to all hospitals, agencies and individuals within the UNHS community
The ability to monitor screening status of all children will be developed in a centralized statewide system
All babies referred by the inpatient screen will return for outpatient screening
Objectives: Barriers will be identified through the NTY advisory board and the Ad Hoc Inter-agency EHDI committee
A plan will be developed to address the barriers and will include education of public, parents and professionals, communication with the medical home and addressing issues with managed care
Plan will be implemented by year 2
All babies will receive assessment by three months of age.
Objectives: Barriers will be identified through the NTY advisory board and the Ad Hoc Inter-agency EHDI committee
A plan will be developed to address the barriers and will include education of public, parents and professionals, communication with the medical home and addressing issues with managed care
Plan will be implemented by year 2
All pediatric audiology providers will have the appropriate skills and equipment.
Objectives: Providers will be surveyed on accessibility and to determine training and equipment needs
University of Arizona will collaborate on providing workshops to target training needs
Communities identified though the survey will receive facilitated meetings with Providers, Parents and Agencies to resolve needs. A funding plan will be developed to meet the needs
Parent Advisors will be knowledgeable and skilled in providing services to infants
Objectives: A plan will be developed through ASDB to distribute materials and provide training
Advanced training, specific to infants, will be offered each year to existing Parent Advisors
Training specific to infants will be incorporated into the initial Parent Advisor Training
Parent to Parent support will be accessible for all parents.
Objectives: Develop plan with input from consultant, parents and providers
Implement plan
No child will be lost to follow-up.
Objectives: An agency will do active follow-up on the status of each child from screening to early intervention
Meet with Agencies to determine plan
Develop Policies and Procedures
Determine funding mechanism for changes
Implement organizational changes
Programs will be sustainable and institutionalized
Objectives:Collaborate on development and introduction of legislation supporting project
Determine sponsorship
Introduce legislation
Implement rulemaking
Systems will be responsive to the needs of parents
Objectives: Include parent in advisory group for NTY
Include parent in Ad Hoc Inter-Agency Committee meetings
Survey parents on barriers to obtaining services
Each child will be cared for in a Medical Home
Objectives: Consult with medical home advisor
Develop plan for educating physicians
Implement plan
Required Resources
Staffing resources required for successful completion of this project for the first year include:
Extensive instate travel will be necessary as well as out of state continuing education, networking and grant related travel to Washington DC. Additional support, information technology, oversight and leadership will be provided through the Department of Health Services, NTY Program. Support for the University of Arizona Pediatric audiology workshop will also be included.
Additional expenditures will be made for materials, mailing, copying costs, supplies and meeting costs. Plan implementation in years 2-4 may require purchase of equipment or additional staff related costs. All expenditures will be made under the State of Arizona Procurement code following established policies and procedures.
10. Project Methodology
The goals and objectives of the AzEHDI project are described in the previous section. Methodology is further defined in the Personnel Allocation Table and the Time Allocation Table. The strategies to meet the goals of the program will be achieved through a collaborative approach. The main strategies include a reengineering of the function of those agencies involved in EHDI, pursuit of legislation, planning, consultation and technical assistance for those aspects of EHDI either identified as in need or vulnerable. Advanced training and education for health care professionals, audiologists and parent advisors will be pursued. The strategies are described below:
11. Evaluation Plan
Evaluation is an important component to monitor processes and assure optimal outcomes. Evaluation will be the primary responsibility of the ADHS' NTY Program Manager. The project coordinator will be responsible not only to the Program Manager but also to the Ad Hoc Inter-Agency Committee.
Data from the screening hospitals will be sent to the NTY program, initially each month. A pilot project will attempt to have data sent weekly either by disk or email. Data will be input by the data manager and reviewed each week by the Screening Coordinator. The information will be used to monitor quality of programs, impact of implementing guidelines and as a guide to providing technical assistance.
Inter-agency processes will be investigated to determine the best method for obtaining the information on where children are at in the process from screening to diagnosis and early intervention. When that information is collected it will be reviewed by the Ad Hoc Inter-Agency committee to determine what method should be used to evaluate the processes.
The NTY advisory board will meet quarterly to make recommendations to the Department of Health Services. Evaluation will be part of their quarterly meetings. The AzEHDI program statistics will be benchmarked against other states through the CDC data collection pilot project and through NCHAM. The Ad Hoc data committee facilitated by CDC developed data definitions and a core set of indicators. The definitions and data items will be used and the data collected. The items will also include the following:
Informal and formal evaluation tools such as surveys, focus groups and evaluation forms will be used to monitor parent satisfaction with the parent to parent support efforts and with the medical home component of the project.