Evaluation of the universal newborn hearing screening and intervention program.

During the last 20 years, the number of infants evaluated for permanent hearing loss at birth has increased dramatically with universal newborn hearing screening and intervention (UNHSI) programs operating in all US states and many territories. One of the most urgent challenges of UNHSI programs involves loss to follow-up among families whose infants screen positive for hearing loss. We surveyed 55 state and territorial UNHSI programs and conducted site visits with 8 state programs to evaluate progress in reaching program goals and to identify barriers to successful follow-up. We conclude that programs have made great strides in screening infants for hearing loss, but barriers to linking families of infants who do not pass the screening to further follow-up remain. We identified 4 areas in which there were barriers to follow-up (lack of service-system capacity, lack of provider knowledge, challenges to families in obtaining services, and information gaps), as well as successful strategies used by some states to address barriers within each of these areas. We also identified 5 key areas for future program improvements: (1) improving data systems to support surveillance and follow-up activities; (2) ensuring that all infants have a medical home; (3) building capacity beyond identified providers; (4) developing family support services; and (5) promoting the importance of early detection.

Federal privacy regulations and the provision of Early Hearing Detection and Intervention programs.

To be successful, Early Hearing Detection and Intervention (EHDI) programs require individually identifiable information about children to be shared among people who are responsible for screening, diagnosis, early intervention, family support, and medical home services. Pediatricians and other stakeholders in the EHDI process often point to federal laws that were passed to ensure privacy and confidentiality in health care and educational programs as major obstacles to achieving efficient and effective EHDI programs. In this article we summarize the provisions of 3 federal laws (the Health Insurance Portability and Accountability Act [HIPAA], the Family Education Rights and Privacy Act [FERPA], and Part C privacy regulations of the Individuals With Disabilities Education Act [IDEA]) that most directly affect information-sharing in EHDI programs. We suggest strategies for sharing the information needed to operate successful EHDI programs while remaining in compliance with these laws, including obtaining signed parental consent to share information between providers, including an option on the individual family services plan for parents to permit sharing of the plan with pediatricians and other providers, and giving copies of all relevant test results to parents to share with providers as they wish.

Medicaid reimbursement of hearing services for infants and young children.

As newborn hearing-screening programs have expanded, more and more infants and young children need hearing services. Medicaid is one of the primary sources of funding for such services and, by law, must establish payment rates that are sufficient to enlist enough providers to provide services. In this study we compared 2005 Medicaid reimbursement rates for hearing services for infants and young children in 15 states with the payment rates for the same services by Medicare and commercially available health insurance. On average, Medicaid rates for the same services were only 67 as high as Medicare and only 38 as high as commercial fees. Furthermore, most Medicaid rates declined from 2000 to 2005, and many states did not have billing codes for a significant number of the hearing services needed by infants and young children. These factors likely contribute to infants and young children with hearing loss not being able to get the hearing services they need to benefit from early identification of hearing loss. These data also raise questions about the extent to which states are meeting the federal requirement that Medicaid payments be sufficient to enlist enough providers so that care and services are adequately available to the general population in the geographic area.

Improving follow-up to newborn hearing screening: a learning-collaborative experience.

Although approximately 95% of US newborns are now screened for hearing loss at birth, more than half of those who do not pass the screen lack a documented diagnosis. In an effort to improve the quality of the follow-up process, teams from 8 states participated in a breakthrough-series learning collaborative. Teams were trained in the Model for Improvement, a quality-improvement approach that entails setting clear aims, tracking results, identifying proven or promising change strategies, and the use of small-scale, rapid-cycle plan-do-study-act tests of these changes. Parents acted as equal partners with professionals in guiding system improvement. Teams identified promising change strategies including ensuring the correct identification of the primary care provider before discharge from the birthing hospital; obtaining a second contact number for each family before discharge; "scripting" the message given to families when an infant does not pass the initial screening test; and using a "roadmap for families" as a joint communication tool between parents and professionals to demonstrate each family's location on the "diagnostic journey." A learning-collaborative approach to quality improvement can be applied at a state-system level. Participants reported that the collaborative experience allowed them to move beyond a focus on improving their own service to improving connections between services and viewing themselves as part of a larger system of care. Ongoing quality-improvement efforts will require refinement of measures used to assess improvement, development of valid indicators of system performance, and an active role for families at all levels of system improvement.

Ensuring financial access to hearing AIDS for infants and young children.

Many young children with permanent hearing loss do not receive hearing aids and related professional services, in part because of public and private financing limitations. In 2006 the Children's Audiology Financing Workgroup was convened by the National Center for Hearing Assessment and Management to evaluate and make recommendations about public and private financing of hearing aids and related professional services for 0- to 3-year-old children. The workgroup recommended 4 possible strategies for ensuring that all infants and young children with hearing loss have access to appropriate hearing aids and professional services: (1) clarify that the definition of assistive technology, which is a required service under Part C of the Individuals With Disabilities Education Act (IDEA), includes not only analog hearing aids but also digital hearing aids with appropriate features as needed by young children with hearing loss; (2) clarify for both state Medicaid and Children's Health Insurance Programs that digital hearing aids are almost always the medically necessary type of hearing aid required for infants and young children and should be covered under the Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) program; (3) encourage the passage of private health insurance legislative mandates to require coverage of appropriate digital hearing aids and related professional services for infants and young children; and (4) establish hearing-aid loaner programs in every state. The costs of providing hearing aids to all 0- to 3-year old children in the United States are estimated here.

The evolution of early hearing detection and intervention programs in the United States.

Identifying and treating children with congenital hearing loss during the first few months of life is a relatively new concept. To assist states in the development of statewide Early Hearing Detection and Intervention programs, the federal government provides grants and/or cooperative agreements to almost all states and has established "National Goals, Program Objectives and Performance Measures" to guide the development and implementation of those systems. This article reviews the history of newborn hearing screening programs in the United States, summarizes the content of legislation and regulations passed by states related to universal newborn hearing screening, and describes how well each National Goal has been addressed. Although substantial progress has been made in the percentage of infants screened for hearing loss before hospital discharge, significant improvement is needed with respect to the availability of pediatric audiologists, implementation of effective tracking and data management systems, program evaluation and quality assurance, availability of appropriate early intervention programs, and linkages with medical home providers.

Infant hearing screening: stakeholder recommendations for parent-centered communication.

OBJECTIVES: The purpose of this study was to identify what stakeholders considered best practices for parent-provider communication regarding newborn hearing screening and diagnosis. We used consensus data to develop educational materials for parents. METHODS: We conducted 29 focus groups and 23 individual interviews between October 2003 and May 2004. Participants included (1) English- and Spanish-speaking parents of infants <18 months of age who had experience with hospital-based newborn hearing screening; (2) parents of children with hearing loss; (3) primary care providers who provide prenatal care or care for newborns; and (4) audiologists, audiology technicians, and hospital nurses. RESULTS: Communication to parents about hospital-based newborn hearing screening was limited. Most parents first learned about the screening in the hospital, but all stakeholders thought a more opportune time for education was before the birth. For parents of infants who did not pass the newborn hearing screening, stakeholders recommended direct communication about the urgency of diagnostic testing. They also indicated that primary care providers needed current information regarding hearing screening, diagnostic testing, and early intervention. All stakeholders thought that a brief brochure for parents to take home would be helpful for hospital-based screening and, if necessary, subsequent diagnostic testing. Primary care providers requested basic, to-the-point information. CONCLUSIONS: The most opportune time to begin discussion of newborn hearing screening is before the birth. Providers need up-to-date information on current standards of hearing screening, diagnosis, and intervention. User-friendly patient education materials, such as those we developed, could assist providers in educating parents.

Newborn screening and genetic testing.

Mandated newborn screening programs for genetic and other congenital conditions for the some 4 million infants born in the United States each year have seen dramatic changes over the past decade. With the mapping of the human genome and other advances in science and technology, there will be continued challenges to and changes in these programs. Nurses who care for infants and their families should be knowledgeable about those changes to correctly transmit information to families and to participate in determining policy for newborn screening practices.