Maryland MCHB State Grant for EHDI

Project Abstract

Organizational Setting: Maryland's Universal Newborn Hearing Screening Program is housed within the Department of Health and Mental Hygiene's Office for Genetics and Children with Special Health Care Needs in Baltimore, Maryland.

Purpose: As of July 2000, State law requires that all infants born in Maryland birthing hospitals receive physiological hearing screening. Since that time, all 37 hospitals have begun screening. The purpose of this project is to improve the quality and coordination of Maryland's systems for universal newborn hearing screening, diagnostic evaluation and intervention through: effective data exchange; culturally competent family outreach and support services; outreach and training for health care providers, audiologists, and early intervention staff; and development of regional resource networks of trained providers.

Challenges: The goal of the Maryland Program is to be in compliance with State law and the public health objectives of the Joint Committee on Infant Hearing 2000 Position Statement to identify hearing-impaired infants by three months of age so that they may receive appropriate intervention by six months of age.

Challenges to meeting that goal, which will be addressed by this project, include: (1) a currently imperfect data system relying on paper forms for input; (2) language and/or cultural barriers to accessing the full benefit of the Program by select groups; (3) the capacity of local early intervention systems to provide information, support, and services to families of newly diagnosed infants and toddlers with hearing loss; (4) a medical provider base insufficiently schooled and experienced in the importance of the Program; and (5) the unequal geographical distribution of pediatric audiologists experienced in the assessment and habilitation of very young infants.

Goals and Objectives: Goals that will be addressed by this project are designed to improve the quality of the existing Program. They are:

• Improve data acquisition and exchange, including piloting electronic data transmission between hospitals and the State Health Department, and improving the ability to identify the child's medical home at discharge.
• Improve culturally competent outreach and support services to families of infants during screening, diagnosis, and intervention by: (a) establishing regional resource networks to link families of newly diagnosed infants with other families of children with hearing loss, and (b) developing and implementing culturally competent outreach strategies, including translation of brochures and materials into multiple languages, and linkages with organizations representing major ethnic groups in the State.
• Improve capacity of the statewide early intervention system to provide family-centered intervention services to newly diagnosed infants and their families by: (a) providing comprehensive training to local intake staff and service coordinators to ensure that families of newly diagnosed infants receive appropriate information and assistance as they enter and participate in the early intervention system, and (b) establishing regional resource networks of trained early intervention service providers to improve the availability of consultation and services in a variety of communication options throughout the State.
• Provide outreach and training to pediatricians and other health care providers on the importance of: (a) early identification and intervention for infants with hearing loss, and (b) providing a coordinated and comprehensive medical home and furnishing medical home contact information to the Program.
• Build capacity and improve access to audiological services (diagnostic and remedial) in the more remote areas of the State.

Methodology: The UNHS Program will work with approximately 10 hospitals developing and piloting a protocol for electronically transmitting infant hearing screening data between the hospitals and the Health Department. The program will coordinate services available through Family Voices and the Maryland Infants and Toddlers Program Family Support Network, and will raise its level of cultural competence by developing materials in multiple language and fostering links with major ethnic organizations of the State. A training needs assessment will be conducted to determine the needs of intake staff, service coordinators, and early intervention service providers in local Infants and Toddlers Programs. Project funding will assist the Infants and Toddlers Program staff to develop a training curriculum for intake staff and service coordinators and a series of regional forums for early intervention providers on the topics of hearing loss and communication options. A series of regional workshops will be offered to medical practitioners, focusing on the importance of early hearing loss identification and intervention, and the importance of establishing a medical home for the hearing impaired infant. A training needs assessment of audiologists will be conducted and a network of experienced consulting audiologists will be developed.

Evaluation: Project outcomes will be evaluated by a variety of means depending on the facet of the project being investigated. Surveys and interviews will serve to assess family's experience with the early intervention system from referral to intervention, and the appropriateness and acceptance of Spanish language materials. Modifications to the data collection system will be assessed through analysis of the timeframe for receipt of data and the accuracy of collected data. Medical provider sessions will be evaluated by attendance data, pre and post testing and session evaluation surveys.

Text of Annotation: The purpose of this project is to improve Maryland's existing UNHS Program. Challenges to the Program have been its data collection system, assuring full accessibility to individuals of varying cultures and languages, providing continuity of services in rural areas, assuring access to experienced audiological providers and garnering full support and understanding of the Program from the State's medical community. The proposal seeks to (1) pilot a data acquisition scheme utilizing the hospitals currently equipped with the technology to transmit their infant hearing data electronically; (2) improve culturally competent outreach and support services to families of infants during screening, diagnosis, and intervention; (3) improve capacity of the statewide early intervention system to provide family-centered intervention services to newly diagnosed infants and their families; (4) provide outreach and training to pediatricians and other health care providers; and (5) building capacity and assuring accessibility of audiological services.

Key Words: Audiology, Cultural Competence, Deaf(ness), Early Intervention, Hard of Hearing, Hearing Impair(ed/ment), Hearing Loss, IDEA, Infant Hearing, Medical Home, Part C, UNHS, Universal Newborn Hearing Screening.

The Purpose of the Project

Hearing loss in early life can have profound and everlasting consequences on the development of speech, language, social and cognitive skills. That rapid identification and intervention can have a remarkable effect in ameliorating these effects of hearing loss has long been recognized in the State of Maryland, and was the basis of recent legislation taking effect in July of 2000 that mandated the hearing screening of all Maryland-born infants before their discharge from the hospital. ^(en)

While the State has been involved in high-risk infant hearing screening since 1985, the universal program of screening is less than a year old. During that time, a number of program weaknesses (please refer to the section on Needs Assessment) have come to light which funding of this project will serve to correct. The purpose of this project is to improve the quality of Maryland's existing Universal Newborn Hearing Screening (UNHS) Program by specifically targeting those features of the program that have been identified as needing additional emphasis, restructuring, or replacement. Attainment of objectives in these areas will help to ensure that all Maryland infants will receive electrophysiological hearing screening before hospital discharge, that those not passing the first screening and a one-month second screening will receive an audiological evaluation before three months of age, and that those diagnosed with hearing loss will receive appropriate intervention services by six months of age within the context of a medical home.

Organizational Experience and Capacity

The Universal Newborn Hearing Screening (UNHS) program is in the Office for Genetics and Children with Special Health Care Needs (OGCSHCN), in the Maryland State Department of Health and Mental Hygiene (DHMH). The OGCSHCN has the experience and capacity to build and support the UNHS program. The OGCSHCN is the successor to the DHMH units that planned, designed, implemented, maintained, evaluated and, now operate and continually review, revaluate and refine a number of similar population-based screening and follow up programs. Many of the original personnel associated with the design and implementation of these programs are still available for consultation. These programs have been in successful operation for many years. These programs include newborn blood spot (metabolic) screening (1965), newborn sickle cell disease screening (1985), birth defects reporting (1983), maternal serum AFP/ triple marker screening (1981) and carrier screening programs for Tay-Sachs disease (1971), sickle cell disease (1973) and thalassemia (1973). The Maryland programs are, perhaps, unique in the vigor of their short and long term follow up components. The OGCSHCN is also the successor to the unit that developed the original Maryland high-risk infant hearing screening program in 1985 in collaboration with the Advisory Council for the Program to Identify Hearing Impaired Infants.

The current UNHS program is built upon the experience of the OGCSHCN with high-risk infant hearing screening and with newborn blood spot screening for metabolic disorders and sickle cell disease. These programs share a number of characteristics. All public health population- based newborn screening programs have the responsibility to assure that screening is offered to all infants, that all infants with positive screening results are followed up and that all affected infants receive appropriate treatment in the required time frame regardless of the family's ability to pay. Each of these programs must work with the State's birthing hospitals and maternity centers, educating them about the importance of the screening program and getting them to "buy in." Each program must find an appropriate contact person at each hospital nursery, establish a working relationship, get them to advocate for the program and assure the proper collection of demographic and clinical data as well as the proper screening of each infant. Each program must prepare appropriate educational materials for professionals and parents and inform and educate professionals and families about the program. Each program must also set up a computerized database for the recording, processing and archiving of test results and establish appropriate protocols for data collection, data entry and the reporting of normal and abnormal test results to hospitals, primary care providers, and parents. Each program must establish a network of expert providers to provide consultation to the program and to primary care providers, to do definitive diagnostic work-ups and to provide long-term care in the required time frame. Appropriate relationships must be established and maintained with the expert provider community, its professional organizations and institutional practice settings. Protocols must be developed to ascertain an infant's primary care provider (medical home) and to find a providers willing to take on infants without medical homes, especially those with abnormal screening test results. A database of primary care providers and expert consultants must be established. A thorough knowledge of third party payers / policies and public programs (medical assistance, CSHCN / Title V program) is essential. Coverage for any necessary treatment, medications and durable medical equipment must be sought. The database must have a follow-up and tracking module, to track each infant through the screening and diagnostic process and follow affected and high risk infants long term to assure that appropriate treatment is received in the required time frame and to document outcomes. Experience in tracking down "lost" infants with abnormal test results or risk factors and definitively diagnosed infants who fail to come for treatment, as well as knowledge of those agencies and institutions that can assist in tracking, is essential. Educational materials for the families of affected infants and knowledge of groups that can provide support to the families are also necessary. Experience in facilitating the formation of support groups is extremely helpful. Experience in program evaluation is also extremely helpful.

The OGSCHCN has all these requirements in place for the other programs and is in the process of establishing them for the new UNHS program. Legislative authority for the program is in place. The nursery contacts are in place. The relationships with the State's primary care providers, the AAP, the hospitals, and the academic medical centers are established. The primary care provider database exists, established in collaboration with, and constantly updated by the Maryland AAP. Relationships with the expert provider community (audiologists, ENTs, speech pathologists, hearing aid manufacturers, etc) are being built. The consultant database and directory has been established, is being updated and will soon be on the web. (A UNHS module has been added to the OGCSHCN web page.) A model protocol for screening has been developed by the audiological community. (See Appendix Page 104) Follow-up and tracking protocols have been adapted from the blood spot newborn screening program and the experience and expertise of the staff in that program carries over to the UNHS program. Likewise, the experience in preparing educational materials, in implementing educational campaigns, in facilitating the formation of parent support groups, and the knowledge of programs and sources of financial and other assistance carries over. The OGCSHCN carried out a highly regarded evaluation of the sickle cell disease program supported by a grant from the Genetics Branch of the Maternal and Child Health Bureau and this experience will also carry over to the new UNHS program.

The OGCSHCN built the current (blood spot) newborn screening database and a previous one. Although the OGSCHCN has been having difficulty with the establishment of the UNHS database, the OGCSHCN has the expertise (contractual computer programmer) to surmount the difficulties, if funding should become available. The database for the UNHS program was initially intended to be a new module of the existing blood spot newborn screening database, which already serves the metabolic and sickle cell disease programs. The data entry unit for this database resides in the newborn screening laboratory and is not available to the UNHS program. The plan was to look up each infant in the existing database and merely enter the few additional UNHS data items. Unfortunately, the OGCSHCN was unsuccessful in obtaining the necessary permanent state data entry positions and it proved impossible to hire and train temporary workers to use the database. Therefore, the UNHS database was (temporarily) unlinked from the existing blood spot database and the data is currently being scanned in. The database is one of the areas of the UNHS program targeted for improvement .The OGCSHCN is hoping to move to electronic data transmission for all its programs in the future. The Governor has called for an "E-Government" initiative that would have 50% of all government business transacted electronically, utilizing web-based approaches where appropriate, by 2005. The OGCSHCN has requested permission to be among the first units to do so.

The OGCSHCN has hired a Director and Audiologist for the program. (See Available Resources) In addition, as stated, the other staff members of the OGCSHCN are available to share their expertise and to help. The OGCSHCN has been successful in obtaining three permanent state positions for the program and assigned an existing secretary to the program. The OGCSHCN has obtained some state funding for the operation of the program but growth in operating funds and positions is always slow and incremental.

In summary, the OGCSHCN has the ability and experience to support the program. The OGCSHCN has planned and implemented many other population-based screening programs. Many relationships and databases built for the blood spot newborn screening programs will also serve the UNHS program. Experience with follow-up and tracking, professional and parent education, database management, parent support groups, early intervention and various programs that can assist families to obtain appropriate care for affected infants will carry over to the UNHS program. Audiological expertise has been obtained and new provider relationships are being built.

Administration Structure

As described in Organizational Experience and Capacity and organizational charts in Appendix Page 69, the UNHS Program is part of the OGCSHCN in the Department of Health and Mental Hygiene (DHMH). The OGCSHCN was created in March 2000 through the merger of the Office for Hereditary Disorders (genetics and birth defects) and the Children's Medical Services Program (fee for service support for low income CSHCN, specialty care and resource development). The intent of the merger was to integrate programs concerned with children with special health care needs and their families (CSHCN). The OGCSHCN mission is: (1) to reduce death, illness and disability from genetic disorders, birth defects, chronic diseases and injuries and to improve the quality of life for affected individuals and their families, and (2) to protect and promote the health of Maryland's children with special health care needs by assuring a family-centered, community-based, comprehensive, coordinated and culturally appropriate system of specialty health care that will partner with each child's medical home.

The OGCSHCN is comprised of five divisions: (1) The Division for Newborn Screening and Follow-up (including Sickle Cell Disease) identifies and follows-up on newborn babies with nine rare and serious disorders of body chemistry. (2) The Division for Birth Defects collects data on the number of babies born with any of twelve common birth defects, monitors birth defect trends especially in relationship to environmental hazards, and provides information on the defects and services to the families of affected infants. (3) The Division of Specialty Care and Regional Resource Development develops resources and provides funding for specialty care services, for children who are uninsured or under-insured in Maryland. It strives to enhance access to community-based services and involve families in planning activities. (4) The Division of Nutrition follows patients with genetic metabolic disorders like PKU or MSUD, providing long term case management and dietary therapy. (5) The Division of Infant Hearing Screening provides for early identification and follow-up of infants with hearing loss and infants at risk for developing a hearing loss. Follow-up services include phone calls to ensure that re-screenings and diagnostic evaluations are completed and intervention, when needed, is initiated in a timely fashion. A toll-free hearing help-line provides audiological resource information to parents and health care professionals.

The UNHS Program has an advisory council, the Advisory Council for the Program to Identify Hearing Impaired Infants. The Council has representation from the medical profession, educators of the deaf and hard of hearing in local educational agencies, the Maryland School for the Deaf, the Maryland State Department of Education (MSDE), the DHMH, mental health professionals (with expertise in the area of hearing loss), audiology, the Maryland Association of the Deaf, the Maryland Chapter of the Alexander Graham Bell Association for the Deaf and Hard of Hearing, and parents. The Council advocates on behalf of the UNHS Program and works to ensure the effective implementation and management of the Program.

Legislation was passed this year to establish an Office for the Deaf within the Governor's Office.^(en)

The new Office is intended to oversee and advocate for existing programs. It is not yet clear exactly how this new office will interact with the existing programs for the deaf and hard of hearing in the State. There is also an existing Governor's Council for Disabilities, which has an active section for the deaf and hard of hearing. The Advisory Council has worked with this group for many years.

The DHMH is the state Title V agency and the Maternal and Child Health Block Grant is administered jointly by the Center for Maternal and Child Health (maternal health, family planning and preventive and primary care for children) and the OGCSHCN.

The OGCSHCN has an excellent working relationship with the MSDE, which is the lead agency for the Maryland Infants and Toddlers Program (ITP), Maryland's Part C IDEA program. Maryland provides ITP services from birth. (See MOU, Appendix Page 90) The OGCSHCN is the DHMH early intervention liaison to the MSDE and is represented on the Interagency Coordinating Council (ICC) for the ITP program.

The OGCSHCN has a close working relationship with the Medical Care Financing Administration (MA), Maryland's medical assistance agency and is the vehicle through which MA pays for case management services provided by the ITP program. HealthChoice, the State's MA managed care program, has a "carve out" for the therapies (OT, PT, speech therapy, and audiological services). The OGCSHCN's Children's Medical Services (CMS), is the monitor for therapy services. Any community based provider of therapies must be designated a CMS provider to provide services to MA clients under the carve out. CMS authorizes the provision of audiological services and equipment for amplification under the carve out. CMS also provides the quality assurance and record review for all the therapies under this program. The OGCSHCN is on several MA advisory councils, including the general MA Advisory Council, the Special Needs Advisory Council and the Rare and Expensive Disease Case Management (REM) Medical Review Council. The CMS program works closely with MA to ensure all eligible CSHCN are enrolled in the appropriate program and mans the 1-800 Children's Resource Line. These activities are covered by an MOU between MA, Title V and the Women's, Infants and Children's supplemental nutrition program (WIC). (See Appendix Page 88)

The OGCSHCN has a contractual relationship with Parent's Place / Family Voices that funds five regional parent resources representatives, the enhancement of the Parent's Place resource database and many other collaborative activities. The OGCSHCN has contractual relationships with all the State's academic medical "Centers of Excellence"(COE) that fund a "resource liaison" function in each center, and address any gaps in the provision of "wrap around" services for CSHCN utilizing the COE specialty clinics. A number of regional outreach clinics are also funded to fill gaps in the availability of specialty services in the community. The "resource liaison" is a real person at the telephone/ computer. All these liaisons are currently linked to each other, to the OGCSHCN and to Parent's Place by phone and E-mail and will be linked by more sophisticated electronic means in the near future.

The OGCSHCN has a strong relationship with the provider community and the Director, Dr Panny, is very active with the Maryland (and national) American Academy of Pediatrics (AAP). The OGCSHCN held a retreat early this spring with the MD-AAP CATCH (Community Access to Child Health Care) Coordinator, the Chairs of the MD-AAP Committee on CSHCN, the MD-AAP Chapter President and Executive Director, the Chairs of the Departments of Pediatrics at all the COE and the Parent's Place Director to explore ways to work together to assure that each CSHCN receives all appropriate specialty care in the context of the medical home. The joint database/ liaison function is the group's first project.

The OGCSHCN participates in numerous activities with the Centers for Disease Control (CDC), the Maternal and Child Health Bureau (MCHB), especially the Genetics Branch, and various SPRANS grantees. THE OGCSHCN participates in the data collection activities of the CDC including the National Birth Defects Prevention Network, the hemophilia program, the sickle cell disease program and the EHDI (Early Hearing Detection and Intervention) program. The OGCSHCN also contributes data to NCHAM (National Center for Hearing Assessment and Management). The OGCSHCN participates in the data collection activities of the National Newborn Screening and Genetics Resource Center and the Director serves on its Advisory Committee. The Director has also participated in numerous MCHB sponsored educational programs and taskforces including the recent MCHB-AAP Taskforce on Newborn Screening. The OGCSHCN also participated in numerous activities of the national Council of Human Genetics Networks (CORN) and still participates in the activities of the Mid-Atlantic Human Genetics Network, including its Newborn Screening committee.

Available Resources

Susan R. Panny, M.D. is Director of the OGCSHCN and brings 20 years of experience in the areas of metabolic newborn screening, genetics, and pediatrics to the Program. Henry J. Ilecki, Ph.D. is Director of the Division of Infant Hearing Screening. He has been involved with infant hearing since the early days of electrophysiological auditory assessment in this area. He established one of the first Canadian infant hearing programs at Montreal's Royal Victoria Hospital in the late 1970s. Jennie Cook, M.A., CCC-A serves as Program Audiologist and is responsible for follow-up. Ms Cook has experience in working with the early intervention program in Frederick County that involved infants and young children with hearing loss. Secretary Sharon Burke and an unfilled administrative specialist line position support the Program. The OGCSHCN is in the process of filling a Computer Network Specialist position that will support the UNHS computer system as well as the other computer systems in the Office. The OGCSHCN has 22 additional staff members with expertise in serving CSHCN, who will work with the developing UNHS program. These additional personnel include a speech pathologist, seven nurses, an OT/PT, two nutritionists, the parent of a special needs child, a program financial eligibility expert, a database manager/statistician, an epidemiologist, two secretaries, a program administrator, a fiscal administrator, three administrative assistants, and a billing expert. The staff collectively has experience with medical issues, availability of genetic services, case management, patient follow up and tracking, planning and presenting educational programs, preparing educational materials, navigating the state bureaucracy, the activities of other state programs including the Infant and Toddlers Program (ITP), the state's academic teaching hospitals, voluntary groups and other community resources. The OGCSHCN also has a contractual relationship with a computer consultant/systems developer.

The UNHS Program has a budget of approximately $195,000 in state general funds. The Program, like many new programs, is seriously under funded. The Program expended $312,000 this year to sustain baseline screening and follow-up activities. No funding is available for outreach or enhancement and it is hoped that grant funding will support these activities. The short fall in the UNHS program has been made up from the OGCSHCN budget, borrowing from other programs, but this can only be a short-term solution. All the appropriate requests for deficiency, supplemental and new initiative state funding have been submitted.

In terms of office space the UNHS program has 352.5 square feet in the OGCSHCN, which has a total of 3,722 square feet in the State office building in Baltimore.

Equipment includes personal computers for all UNHS staff with routine software and some graphics capability. Additional resources include the current Access-based blood spot newborn screening database, the existing UNHS database, various primary care provider databases and an existing contract for optical scanning.

Community resources include those described in the Organizational Experience and Capacity and Administration Structure sections as well as the Maryland Hearing, Speech and Language Association and the Maryland Academy of Audiology, the Hearing and Speech Agency and the Maryland Hospital Association. On the national level we are of assistance available through NCHAM, MCHB and EHDI. However, our principle community based resource is the State's early intervention program.

Early intervention services to infants and toddlers with hearing loss and their families are available through the ITP, the State's interagency early intervention system under Part C of IDEA. The Local Infants and Toddlers Programs (LITP), composed of local school systems, local departments of health and social services, and other public and private providers in each of the Maryland's twenty-four jurisdictions constitute the service delivery component of the statewide system. A local Single Point of Entry (SPE) has been designated for each LITP to accept referrals from parents and other primary referral sources who have identified a child with, or suspected of having, a developmental delay.

The Maryland model UNHS Protocol recommends referral to the SPE for the LITP immediately after hearing loss is confirmed. Information about local SPEs is provided on an ongoing basis to the audiologists throughout the State who perform diagnostic evaluations for infants who do not pass the community-based rescreening after discharge from the hospital. After confirmation of hearing loss, parents receive the brochure, If Your Child Has a Hearing Loss, which provides an overview of services available through LITP programs.

Infants and toddlers with confirmed hearing loss are automatically eligible for early intervention services. After referral to the SPE, an interim service coordinator works with the family and options for service delivery are explored. The primary goal of the Individualized Family Service Plan is the development of language and communication skills based on the needs of the child and the priorities of the family.

The LITPs offer a range of auditory-oral and total communication programs, primarily through local school systems. The Maryland School for the Deaf is a statewide resource to LITP, providing support and intervention to those families requesting American Sign Language as the primary communication mode for their child.

Legislation passed this year provides immediate access to amplification for infants diagnosed with hearing loss beginning in 2002 through a Hearing Aid Loan Bank to be established in the MSDE.^(en)

An audiologist working in the Maryland ITP, Preschool Services unit of the Division of Special Education and Early Intervention Services will administer the Loan Bank. Hearing aids for infants and toddlers with hearing loss will be loaned on a temporary basis to parents without insurance coverage or who are otherwise experiencing delays in procuring hearing aids. In addition, a law mandating insurance coverage for hearing aids for ^(en) children was passed this year and will contribute significantly to the State's UNHS Program.

Identification of the Target Population and Service Availability

The target population includes all infants born in Maryland and their families. Barriers to serving this population include (1) inadequacy of the data management model in place to accurately ensure the reliable follow-up of identified infants with hearing loss; (2) lack of culturally competent outreach resources and educational material; (3) lack of understanding, experience or initiative about UNHS by professionals in the healthcare and education sectors; and (4) insufficiency of audiological services in rural areas.

The data system is crucial to the entire population so that families may be notified of test results, so that results can be forwarded to the infant's medical home and so that positive screening test results may be followed up.

To successfully serve all Maryland's newborns, the following three groups have been identified for targeting. Medical providers--which include physicians (viz., pediatricians, family practitioners, obstetricians, and otolaryngologists/otologists), physician assistants, and nurse practitioners--are essential components of a successful UNHS program. Without their endorsement and use of the Program, a significant number of parents will not pursue follow-up recommendations.

Second, audiologists and related professionals, such as teachers of the deaf and hard of hearing and early intervention specialists, may not be readily available in rural areas, or may lack the experience required to provide service--particularly intervention service--to young infants with a hearing loss. The grant will target these provider types in an effort to build a system in which intervention services may be obtained at minimal inconvenience to parents close to their place of residence.

Finally, Maryland parents of varying ethnicities may not reap the full benefit of the UNHS Program because of their lack of familiarity with English or because of an inadequate support network of individuals from like cultural or linguistic background. A description of this population is provided in the section on Needs Assessment.

Specific plans to address these issues for these populations are in the Methodology section.

Needs Assessment

Current Status-- Universal newborn hearing screening became law ^(en) in Maryland on July 1, 2000. As a result, all birthing hospitals are now required to screen to all newborns prior to discharge. Insurance coverage for hearing screening is also mandated. Hospitals are required to report the UNHS results and any risk factors to the DHMH. Decisions regarding personnel, type of equipment, hospital screening protocols (although an overall Program protocol is provided) and follow-up procedures are left to the discretion of the hospital provided they are consistent with the Maryland legislation, the American Academy of Pediatrics 1999 Task Force Statement and the Joint Committee on Infant Hearing 2000 Position Statement.

The DHMH has assisted hospitals establish their screening programs. A well-attended UNHS Conference was conducted in the Fall of 1999. A UNHS Implementation Resource Manual was developed and provided at the conference and to any hospital not in attendance. In Spring 2000, in-service visits were offered to all birthing hospitals and audiological contractors that were involved in establishing their programs. In Spring 2001, update visits were begun by Program staff and Advisory Council members to provide technical assistance if needed, determine hospital protocols, establish better communication lines, and determine readiness for electronic transmission to the DHMH.

Currently in Maryland, all thirty-seven birthing hospitals are providing UNHS to infants prior to discharge. Of the estimated 70,000 births in Maryland each year, approximately 69,300 are born in birthing hospitals. The other 700 births are in birthing centers or at home. Three large birthing centers in the state provide reports of the births to the department and refer the parents for hearing screening. Informed consent is not part of the program because the law mandates the service. ^(en) Nonetheless, a small percentage of Maryland's hospitals do utilize written consent forms in their programs. Parents may opt out of receiving the screening service if they so choose. Failure to specify informed consent in the Maryland legislation notwithstanding, the DHMH will begin efforts to convince hospital programs to incorporate informed consent as part of their rapport-building with parents.

Results of the hearing screening are reported to the Program on a three-part state provided UNHS Level 1 Form. (See protocol in Appendix Page 105) By law, the Program notifies the infant's parents and physician of the screening results (which include Level 2 outcomes, below), any risk factors for increased risk for hearing loss, and any applicable recommendations.

Each month, 90 to 100% of infants born in birthing hospitals are screened for hearing loss prior to discharge. Reasons for not screening infants prior to discharge are early discharge, parent refusal, equipment failure, and infant death.

Either one of two electrophysiological screening protocols is utilized for infant hearing screening: Otoacoustic Emissions (OAE) or Auditory Brainstem Response (ABR). Hospital screening protocols vary from a one-step up to a six- or seven-step screening, using the same or different technology, if the infant does not pass the initial birth screen.

Referral rates at discharge vary from 1.5% to 15%. Seeking to minimize false positive referrals for audiological and medical evaluations, Maryland screening protocols recommend a hearing re-screening by one month of age (UNHS Level 2). This may occur at the birth hospital, an audiology clinic or office, or a physician's office (usually an ENT). All infants who are missed at the hospital or born at a maternity birthing center are referred for the Level 2 screening prior to one month of age. The Level 2 screening or one-month screening is reported to the Program on a Level 2 UNHS Form.

Infants failing the hearing screening are referred for an audiological evaluation (Level 3), which is offered in a variety of settings (hospital centers, freestanding community centers, private practices, etc.). Families are contacted by phone, assistance and referral to the ITP is offered.

The Maryland UNHS Program has identified the following five areas that are in need of improvement:

1. Data Acquisition and Management--Maryland's UNHS Program has its roots in the State's high-risk hearing screening program, which dates to 1985. The data acquisition process currently in place is now being severely taxed by having to report and store every one of the 70,000 babies expected to be born in the State each year, as well as follow every baby identified with hearing loss.

Progress was made in December 2000 when the Program began utilization of computer readable paper forms using optical character recognition (OCR) software. Hospital providers complete the forms manually, then send them to the Health Department which contracts with a scanning vendor who digitizes the data so that it can be merged into the Department's Microsoft Access database. While an improvement, the strategy has several shortfalls. First, it is susceptible to human error of different kinds. Quality of penmanship, for example, varies widely. Some forms present little challenge to the OCR algorithms used by the vendor, while others are illegible, incomplete or contain stray data. Persons verifying the process are often hard-pressed to make sense of the forms.

Another problem with the system is the fact that several Maryland hospitals already using computerized data tracking systems are forced to report by paper because the State's Program is not equipped to receive hearing screening data electronically.

This causes inconvenience to these providers by having to replicate computer-resident data, and the "double-book" process provides an opportunity for the introduction of error.

Finally, the paper process is costly (approximately $1 per page to scan), the procurement procedure is complex and unreliable, and it does not offer the security afforded by appropriately encrypted files transmitted electronically.

2. Culturally Competent Outreach and Family Support--One of the objectives of Maryland's UNHS program is to make all of the program's features accessible to all of the State's constituents regardless of the language or cultural background of the families involved.

The State has a population of over five million with the non-white population exceeding two million people in 2000. ^(en) Ethnicity breakdown is as follows: Black or African American (1,477,411), Hispanic (227,916), Asian (210,929), persons with two or more stated ethnicities specified (103,587), American Indian and Alaska native (15,423), and Native Hawaiian and other Pacific Islander (2,303). Persons falling into "other" ethnic categories numbered 95,525.

The total population of Maryland increased by about 11% between 1990 and 2000. While the Black/African American segment of the population registered the largest increase (287,512, an increase of approximately 24%) over the last decade, the highest rate of growth among the single groups identified by the U.S. Census Bureau was in the Hispanic population. This segment increased by 102,814, a change of over 82%. The second fastest growing group, the Asian population, increased by 72,781 (53%). American Indians and Alaska natives increased by 2,451 (19%), and Native Hawaiians and Pacific Islanders by 732 (47%). Individuals not falling into any of these groups collectively added 50,611 to their ranks, an increase of 113%.

From these data, the Hispanic and Asian populations of the State emerge as groups to target for the preparation of materials specific to the various languages involved.^(en) Both groups are principally concentrated in Montgomery and Prince George's Counties with 2000 Census populations of 157,661and 129,683 for the Hispanic and Asian groups respectively. Both groups are growing faster than the State's general population. The growth in Hispanic population exceeded 100% in ten of Maryland's 24 counties, and surpassed the State average in the remaining 14 counties. Similarly, the Asian population growth exceeded the State average in all counties, and was greater than 100% in five.

Families of newly diagnosed infants with hearing loss have many questions about hearing loss, what decisions need to be made, what to expect in each stage of their child's development, and how to communicate with their babies. In addition to the information and support of physicians, audiologists, and early intervention providers, families of newly diagnosed infants greatly benefit from the perspectives and experiences of peer families.

While there are family support services available through Family Voices and local ITP Family Support Networks, linkages with other families are not always made immediately following diagnosis of hearing loss and are often difficult to facilitate in rural areas and for non-English speaking families. In addition, these networks are not specific for hearing loss. Increased access to culturally competent information and family support services through regional coordination and enhancement of existing resources was identified in the preliminary needs assessment conducted in 2000.

3. Capacity of Statewide Early Intervention System --Prior to the implementation of UNHS in Maryland, the majority of children with hearing loss were referred to LITP between the ages of 12 and 36 months. As full implementation of UNHS is realized, it is expected that infants with congenital hearing loss will begin to receive early intervention services by six months of age.

In a survey conducted in FY 2000, training and information on best practices for providing services and supports to very young infants with hearing loss and their families was identified as the primary need by LITP. LITP Directors expressed concern about the shortages of personnel with experience with babies with hearing loss and the limited availability of trained providers in the full range of communication options and approaches, especially in rural areas in the State. The importance of including intake staff and service coordinators who have the first contacts with families of newly diagnosed infants was also identified as a priority area.

In FY 02, a more comprehensive needs assessment will be conducted to determine the specific training and information needs of local staff and the extent and nature of the resource gaps throughout the State

4.Medical Provider Support----Many pediatric primary care provides are unfamiliar with the literature on early language development, unsure of the value of early identification of hearing loss, uncertain as to the appropriate work up of an infant with positive hearing screening result, and unfamiliar with the various options for infants with demonstrated hearing loss. In addition, while most pediatricians are committed to the concept of providing comprehensive coordinated care in a medical home, in practice in the current managed care climate it is increasingly difficult to make the time to coordinate care and actively involve all participants in the child's care in planning. Many pediatricians have expressed interest in attending educational programs on UNHS and the diagnosis and management of hearing loss and in participating in trainings using some of the materials on the medical home that have been produced by the AAP. According to the MD AAP there are approximately 1,300 pediatricians in Maryland. Approximately 400 do not have clinical practices and the remainder are in approximately 125 practices. In addition there are approximately 1000 other physicians serving a primary care providers for children. The average practice in Maryland has 6 physicians so another approximately166 practices care for children, making a total of almost 300 practices. The UNHS Program would like to provide such educational sessions to at least one physician from each practice. The MD AAP is interested in co-sponsoring such presentations.

The Maryland State Department of Education, the State lead Agency for Part C of IDEA, has worked closely with the DHMH throughout the development and initial implementation of the UNHS Program. The Part C Coordinator serves on the Advisory Council, participating in all collaborative efforts to strengthen and coordinate Maryland's systems for screening, diagnosis, and early intervention for infants and toddlers with hearing loss and their families.

During the grant period, Maryland ITP staff at the State and local levels will participate in collaborative outreach and professional development project activities to increase the availability and improve the quality of family support, service coordination, and early intervention services to infants and toddlers with hearing loss.

Initial contact has been made with the newly formed Center for Early Intervention Professionals in Hearing Impairment (CEIP-HI) at the University of North Carolina, Greensboro to request assistance in preparing the State's early intervention personnel to serve infants with hearing loss. The Maryland ITP will take the lead in maintaining contact with the newly formed Center as they gear up to offer training services.

In addition to the MSDE and the collaborative network of Family Voices/ Parents Place, the academic medical centers, the OGCSHCN and UNHS Program (described in the Organizational Experience, Administrative Structure and Available Resources sections), the following collaborative partners/agreements should be noted.

The Interagency agreement among MSDE, DHMH, The Department of Human Resources and The Office for Children, Youth and Families (See Appendix Page 90).

Maryland Audiology Association (MAA)

Maryland Hospital Association

Educational Audiology Association

Maryland Speech-Language-Hearing Association (MSHA)

Spanish Speaking Communities of Maryland

Goals and Objectives

1. Pilot a data acquisition protocol with the State's hospitals presently capable of electronically transmitting data to the Health Department and improve the ability of the system to identify the medical home.

Objective 1: By October 1, 2001, survey hospitals to determine capability and interest in transmitting data to Program electronically.

Objective 2: By February 1, 2002 and in consultation with the Department's IRMA, devise strategy for data transmittal from participating hospitals.

Objective 3: By April 1,2002 have data transfer system in place and initiate data transfer protocols.

Objective 4: By August 30, 2002, determine effectiveness of transfer procedures compared to current (form scanning) method. Criterion measures to be cost, speed, and accuracy.

Improve culturally competent outreach and support services to families of infants during

screening, diagnosis, and intervention by: (a) establishing regional resource networks to link families of newly diagnosed infants with other families of children with hearing loss and other support services, and (b) developing and implementing culturally competent outreach strategies, including translation of brochures and materials into multiple languages, and linkages with organizations representing major ethnic groups in the State.

Objective (a) 1: By October 1, 2001, identify existing Parent's Place regional parent representatives and Local ITP Family Support Network parent coordinators in designated regions of the State.

Objective (a) 2: By December1, 2001, regional parent representatives / coordinators will identify parent mentors who would be willing to provide information and support to families of newly diagnosed infants.

Objective (a) 3: By April 1, 2002, provide information and training to parent mentors to prepare them for providing one-to-one support to families of newly diagnosed infants.

Objective (a) 4: By June1, 2002, disseminate information about how families of newly diagnosed infants can contact parent mentors to find out about local audiologists, local early intervention systems, and other organizations working with families of young children with hearing loss.

Objective (b) 1: Upon funding, begin preparation of a variety of materials in the Spanish language. These will include brochures and other instructional materials. Adequate data currently exists (from the 2000 U.S. Census--refer to Needs Assessment section--and hospital requests for assistance) to justify proceeding.

Objective (b) 2: (1) By, October1, 2001

begin modification of database to manage Spanish language reports. The first step will be to determine and implement the chosen method of displaying Spanish options; (2) byDecember1, 2001, convert select text into Spanish; (3) by June 1, 2002, implement changes within the database to handle the risk factors in Spanish; and (4) by August 30, 2002, complete testing of database modifications.

Objective (b) 3: By November 1, 2001, survey the State for the existence of Spanish language/culture-based support groups (e.g., Mexican, Puerto Rican, Cuban, Colombian, etc.). By December 1,2001, begin enlisting consultation and assistance from identified groups to further determine needs.

Objective (b) 5: By late Fall of 2001,^(en) determine what, if any languages other than Spanish are sufficiently prevalent in the State (based on U.S. Census data and hospital reports) to justify the creation of additional materials in that (those) language(s). Koreans are probably the next most numerous group of non-English speakers.

Objective (a) 1: By December 1,2002, survey local Infants and Toddlers Programs to determine specific information and training needs of intake staff and service coordinators working with families of newly diagnosed infants.

Objective (a) 2: By April 1,2002, develop training curriculum and schedule regional training sessions.

Objective (b) 1: By February 1, 2002, survey local Infants and Toddlers Programs to determine the current number of infants with hearing loss and their families referred and served, the types of services currently available in each jurisdiction, and the types of services/resources needed.

Objective (b) 2: By June 1, 2002, convene regional forums of LITP Directors and providers of services to young children with hearing loss to develop strategies for sharing resources and best practices, and addressing regional training needs on an ongoing basis.

Provide outreach and training to pediatricians and other health care providers on the importance of a). early identification and intervention for infants with hearing loss, and b). the importance of a coordinated medical home for the infant.

Objective 1: Determine by January1, 2002, (a) relevant medical provider groups to approach for participation in the UNHS effort, and (b) venue and strategy for each.

Objective 2: By September 30, 2002, to implement strategies (almost certainly a dinner meetings co-sponsored by the MD AAP) for pediatric primary care providers.

Objective 3: By October 1, 2002, determine effectiveness of the activity for pediatric primary care providers. Measures to include: attendance figures for each venue, end-of-session quizzes and/or surveys, post-session analysis of UNHS data quality (e.g., pediatrician name field , follow-up compliance, etc.).

Objective 3: By April 1, 2002, plan an activity for another relevant provider group.

5. Build capacity and improve access to audiological services (diagnostic and remedial) in the more remote areas of the State.

Objective 1: By November 2001, identify "in-need" areas of the state by cross-referencing (pediatric) audiologists with expected prevalence of newborn hearing loss in rural areas of State and obtaining names of Medical Assistance providers by region/county and MCO.

Objective 2: By January 2002, complete survey of audiologists as means of identifying resources willing to either serve as direct service providers or consultants in rural Maryland.

Objective 3: By February 1, 2002, survey parents of infants who have been through the UNHS program to the diagnostic level (Level 3) in order to assess their satisfaction and ability to access services.

Objective 4: By April 2002, incorporate acquired data into action plan, including establishment of a network (web based and hard copy directory) of audiologists with expertise in infant assessment and remedial services and if needed, contracting regional consultants.

Objective 5: By September 2002, determine effectiveness of effort to identify audiological and educational resources to offer diagnostic and intervention services in rural Maryland.

Required Resources

Funding will be requested for translation services (viz., Spanish and other languages as determined during the course of the grant). Printing/mailing costs associated with these new materials will be born by the OGCSHCN.

Funding to pay consulting audiologist(s) is needed to serve Maryland's rural areas and provide training seminars.

Funding is requested to establish a Virtual Private Network (VPN) to allow secure reception of electronically transmitted data. In addition, funds will be requested to purchase computer consulting expertise and software/hardware as necessary to facilitate the electronic transfer of data from birthing hospitals to the DHMH.

Funding will be needed for the regional educational programs for the involved early intervention personnel and the various medical providers.

The ITP program will provide 400 copies of Choices in Deafness for distribution to families of newly diagnosed infants after they are referred to local ITP programs a an in-kind contribution.

The Family Health Administration office of Management Services and the DHMH Office of Budget and Management , incorporating appropriate fiscal and accounting procedures, will ensure that allocated funds will be utilized in the manner described herein.

Project Methodology

Pilot a data acquisition protocol with the State's hospitals presently capable of electronically transmitting data to the Health Department.

The State currently uses a Microsoft Access database to manage its UNHS data. The biggest drawback to the system is getting hospital data from across the State into the database. Providers, whether they are equipped electronic system like OZ or not, must manually enter their data on a paper form, which is then optically scanned and returned to the program in digital format. The disadvantages were described elsewhere (Needs Assessment), but the current system is frustrating to providers who are equipped to transmit electronically as well as being slow and inaccurate.

Funding will enable the State to pilot strategies of collecting data from nine or ten facilities ^(en) using OZ Systems' SIMS ^(en) and one facility ^(en) using FileMaker Pro. Since virtually all Maryland hospitals currently using commercial UNHS database software are using SIMS, the project will evaluate the speed and accuracy of UNHS data transmissions from these sites. Funding will enable the Program to create a VPN and a system to bring electronically transmitted data through the DHMH network firewall.

The system (shown in illustration) would be comprised of a designated computer containing a Secure Socket Layer (SSL) and a digital certificate communicating with an access server outside the DHMH firewall. Client-side certificates and passwords meet a two-part authentication standard while the firewall configuration reduces the risk of inappropriate access to data by non-trusted users. The SSL would provide a reasonable level of communications security and a Virtual Private Network (VPN) would permit access to deeper resources as appropriate. Implementation of a "smart card" digital certificate would further enhance authentication controls when both the information technology market and the local computing environment come to support the deployment of such services.

As a measure of comparative accuracy, hospitals will continue to send the Program data as they do currently--on paper forms. Following their conversion to digital format, said data will be compared to their transmitted electronically counterparts.

A particular concern with the Program's current system is the difficulty encountered when attempting to match Level 1 and Level 2 (one-month) screens. Matching occurs when links are established on three fields: social security number, last name, and date of birth. Inability to match electronically compromises the Program's ability to provide meaningful follow-up. In worst-case instances in Maryland, the electronic matching of forms has been as poor as 30%, necessitating hand matching. It is hoped that electronic data transfer protocols may address this issue.

Efforts to populate the UNHS database from other databases (blood spot/ newborn screening) were made, but for a variety of reasons--principally non-technical in nature--they were unsuccessful. The issue of linkage between the UNHS database and the newborn blood spot screening database or the electronic birth certificate (EBC) will be revisited with funding of this proposal.

Improve culturally competent outreach and support services to families of infants during screening, diagnosis, and intervention.

Family support services available through Family Voices and the Maryland Infants and Toddlers Program Family Support Network will be coordinated regionally to ensure that parents of newly diagnosed infants with hearing loss throughout the State can be linked with parent mentors and other information and support resources. Each region will identify a pool of parents of children with hearing loss to act as mentors and will develop a mechanism through which parents of newly diagnosed infants will be linked with trained parent mentors. The Training Coordinator supported by project funds will assist the lead parent coordinators in each region to develop and provide training to parent mentors in basic listening and support skills and how to assist families to work effectively with early intervention and medical professionals.

Based on hospital reports and the results of the U.S. Census for 2000, efforts need to be made to make the UNHS Program more completely accessible to non-English speaking families. Based on data to date, the Hispanic population of the State will be the first to target. The program will contract with a Spanish translator (preferably one with a background in audiology, educational audiology, or education) to provide the written materials needed. These will include all computer-generated correspondence produced by the Program's Access database. Currently, all correspondence is in English only. Incorporation of translated material will require the assistance of the Program's programmer, Vector Software.

Brochures and other instructional materials will also be translated. These will include Universal Newborn Hearing Screening in Maryland; Baby, Baby Do You Hear Me? ; Stages of Hearing, Language and Speech Development (Birth to Five Years);^(en) and If Your Child Has a Hearing Loss, We Can Help. Additionally, new materials are being planned, for example, a pamphlet on risk factors.Improvements in the web site will permit visitors to the site to "surf" in Spanish as well as English.

Like activities will ensue for other ethnicities once additional data become available. Based on the U.S. census data, this will likely be one of the Asian groups, probably Koreans.

Improve capacity of the statewide early intervention system to provide family-centered intervention services to newly diagnosed infants and their families.

A comprehensive needs assessment will be completed in the first two months of the grant period to target the training needs of intake staff, service coordinators, and early intervention service providers in LITP programs. In addition to conducting a survey of Program Directors, service providers, and families currently receiving early intervention services, the ITP program staff will analyze data from the statewide tracking system and local training plans to determine the resource needs of local early intervention personnel.

The Training Coordinator supported by project funds will assist the ITP program staff to develop a training curriculum on hearing loss and communication options for intake staff and service coordinators. Regional training sessions will be scheduled and conducted in collaboration with other training activities planned during the grant period. The ITP program holds regional meetings several times a year.

LITP programs will identify resource needs and develop regional resource networks to share best practices, expertise in service options, and professional development activities. Support from the Center for Early Intervention Professionals in Hearing Impairment will be requested to assist local service providers to acquire professional competencies in identified areas of need.

Public education has been addressed by the distribution of Program brochures to all pediatric and obstetric practices and hospitals and a series of TV spots on UNHS, made and periodically run by WJZTV. The spots are run for blitzes of 6 weeks at a time and are targeted to times/programs most likely to reach parents, women of childbearing age and grandparents.

Provide outreach and training to pediatricians and other health care providers on the importance of early identification and intervention for infants with hearing loss and the important role of the infants medical home.

In collaboration with the MD AAP, a survey of pediatricians and other primary child health care providers will be conducted to ascertain the topics most important to them and their preference for the format of an educational activity. In the past such surveys have demonstrated preference for a dinner meeting at local hospitals. Speakers from academic medical centers will do most of the presentations. The teaching materials on the medical home have already been requested from the AAP and will be adapted for the Maryland audience. An attempt will be made to attract at least one member of every child health care practice in Maryland. The MD AAP will co-sponsor and CME credits will be provided. Other groups will also be surveyed (ENTs, geneticists, etc ) to ascertain their educational needs associated with the program and appropriate activities will be planed.

It should be noted that, as in the blood spot newborn screening program, if any infant with positive UNHS screening test results is without a medical home, the Program staff will assist the family to find one and will find a pediatric provider willing to accept the infant in their practice. These dinner meetings will provide an excellent forum for a "pep-talk" on the need for and virtue of accepting an occasional uncompensated care patient.

Build capacity and improve access to audiological services (diagnostic and remedial) in the more remote areas of the State.

Within the first five months of the project, a comprehensive analysis of statistical and audiological service directory data will be completed, along with parent and audiologist surveys. This data will determine the scope and direction of the action plan, which will include the development of an UNHS audiology network. Hard copy directory and website based formats will be developed utilizing support staff in the OGCSHCN and the Web Development Staff at DHMH. If the need is identified, a consultant audiologist(s) will be contracted to provide expertise in the evaluation and habilitation of infants in remote areas of the state and educational workshops. Additional information on project methodology is provided in the Project Activities Time Allocation Table and the Personnel Allocation Chart in Appendix Page 26.

Evaluation Plan

The tracking and surveillance database will be used to analyze outcome data for the State Program. Monthly, quarterly and annual reports will be generated as needed to monitor project progress and provide annual reports to the Maryland Secretary of Health. Periodic reports are already sent to the legislature and the

Advisory Council already sends an Annual Report, including program data, to the Secretary. Birthing hospitals and other involved UNHS providers will also receive feedback to assist in their program development/improvement. The effort to improve data quality is being addressed at the source, but not being paid for by this grant. The quality of data on Level 1 forms is heavily dependant upon the hospitals filling out the form completely and accurately. This is being addressed by a series of hospital visits and by phone calls and letters to hospital contacts but since turn over at the hospitals is high, it is an ongoing battle. The quality of the data on Level 2 and Level 3 forms similarly depends upon the evaluating audiologists. They are being addressed by letter and at meetings of their professional associations (MD AAA, MASHA, Committee for he Education of the Deaf, etc). These personnel will be encouraged and motivated by accurate feedback on data quality.

The electronic data transmission pilot project will be monitored for accuracy and completeness of data utilizing queries to (1) determine the number of returned letters, (2) the number of inaccurate hospital codes and (3) the number of records missing critical data. As well, timelines of data reception, verification, generation of parent and physician notifications, and age of infant at follow-up will be calculated and compared to current practice. The ability of the database to link follow-up reports (Level 2, 3 and 4 Forms) with the original infant record will also be monitored by percentage of matches. Finally, a cost analysis will be conducted to compare electronic data collection to the current system of paper forms with scanning and verification data entry. (Goal 1) The database will of course provide all the usual statistical data including number of infants screened, number referred, number evaluated, age at evaluation/diagnosis, distribution of diagnoses, percent with a medical home, number referred to ITP, number enrolled in habilitative service programs and age at enrollment.

Progress in establishing a medical home prior to discharge will be partially monitored by querying for percentage of identified primary care physicians in the Level 1 report and the vigor of medical home coordinating activity by the timeliness of rescreening, diagnostic evaluation and entry into habilitative services. (Goals 1 and 4)

The effectiveness of the regional family support networks will be determined initially by tracking the number of available trained parent mentors in each region, the number of requests for parent mentors, and the number of successful linkages with parents of newly diagnosed infants. (Goal 2a)

Surveys will be disseminated at predetermined intervals to parents of infants and toddlers with hearing loss to evaluate the accessibility and quality of family support, service coordination, and early intervention services at referral, during the development and implementation of the Individualized Family Service Plan (IFSP), and at transition. (Goals 2a and 3)

The impact of professional outreach and regional training sessions for LITP intake staff and service coordinators, medical providers and audiologists will be evaluated through pre- and post testing, and parent surveys. Baseline data from the needs assessment of LITP will be used to plan regional forums of administrators and services providers. The effectiveness of strategies developed at the regional forums to improve the capacity of LITP to will be initially evaluated by updating pertinent areas of the local needs assessment and by parent surveys. (Goal 3)

Two evaluation plans will be used to determine the effectiveness of offering Spanish language materials through the UNHS Program. In the first, data acquired by the Program will track the number of parents choosing the Spanish language option. Usage is a good indicator of need. How well that need is addressed by the action put into place by this project falls to the second evaluation plan, namely to randomly poll parents who chose to receive materials in Spanish to determine their views of the appropriateness (informational content, readability, language accuracy, etc.) of the translated material. The survey instrument will likely be a translated variant of the "Parent Questionnaire about Ohio Infant Hearing Screening and Assessment Program (IHSAP)."^(en)

(Goal 2b)

The effectiveness of the educational programs for primary care physicians will be evaluated by evidence of effective medical home coordinating activity, as described above, and by attendance and evaluation of the pre and post session questionnaires. (Goal 4)

The extent to which the capacity and access to audiological services have improved in the remote areas of the state will be assessed by cross-referencing the audiology practice locations (with services they provide and the insurance plans in which they participate) from the network directory with the number of infants requiring evaluation residing in various areas of the state from the infant hearing database. The extent to which the audiology consultant(s) has been utilized and locations that requested such consultation will also be analyzed. Parent surveys, such as a variant of the IHSAP, will be conducted. (Goal 5)

1. Maryland HB 884(1999), SB 624 (1999)
2. HB 1187(2001), SB 407(2001)
3. Maryland House Bill 282 (2001), Senate Bill 28281(2001).
4. Maryland HB 160, SB 615 (2001).
5. U.S. Census Bureau, Census 2000, PL94-171 release. Prepared by the Maryland Department of Planning, Planning Data services, March 2001.
6. Availability of the languages comprising the Asian group is not expected to be available until mid-Fall. Similarly, a description of languages comprising the "other ethnicities" categories is anticipated at that time.
7. Anne Arundel, Franklin Square, Greater Baltimore Medical Center (pending), Holy Cross, Howard County, Maryland General, Peninsula Regional, St. Agnes, St. Joseph, and Union Memorial.
8. Screening and Information Management Solution (SIMS).
9. Mercy Hospital.
10. This appears on the back of the Program's Level I1 Hearing Screening Form.
11. https://www.infanthearing.org/ehdi/evaluationtools.html