Irene Forsman

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.

Improving Follow-up to Newborn Hearing Screening: A Learning-Collaborative Experience

Although ∼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 familys 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.

Preface: Newborn Hearing Screening in the United States: Historical Perspective and Future Directions

Every year, 4000 to 8000 children are born in the United States with permanent hearing losses that pose a risk to their speech and language development.1–3 If children with milder losses and losses that affect only 1 ear are included, that number is almost doubled. Until just a decade ago, late diagnosis was the norm, with the average age at identification of congenital hearing loss reported as 2½ to 3 years or even later.1,4 A valuable window of opportunity for early intervention was being lost. Intervention in the first 6 months of life may be particularly important for speech and language development,5,6 and parents and professionals overwhelmingly prefer early diagnosis.7,8 Technologic advances in automated newborn hearing-screening technology, followed by a series of successful demonstration projects,9 resulted in the introduction of universal newborn hearing screening across the United States in the mid-to-late 1990s. More than 95% of newborns are now screened for hearing loss shortly after birth, which represents one of the most successful and rapid examples of research moving into practice in pediatric public health. Newborn hearing screening is 1 of only 7 preventive services for children recommended by the US Preventive Services Task Force.10nnThe success of the screening program depends on far more than the initial screen. The Joint Committee on Infant Hearing has set 3 goals: screening should be completed by 1 month of age, diagnosis should be made by 3 months, and intervention and treatment should commence by 6 months.11 Although the first goal is close to being met, the other goals are not. Recent data from the Centers for Disease Control and Prevention suggest that up to 60% of newborns who do not pass the hearing screen do not have … nnAddress correspondence to Shirley A. Russ, MD, MPH, Division of Academic Primary Care Pediatrics, 8700 Beverly Blvd, Room 1165W, Los Angeles, CA 90048. E-mail: shirlyruss{at}aol.com

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 Childrens 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 Childrens 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.

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.

Children with special health-care needs: Access to care

ECENT AND RAPID advances in the application of scientific knowledge in the clinical setting have resulted in a growing population of children with special health-care needs. Two decades ago, these children were cared for in institutional settings. Today, children with special healthcare needs are generally cared for by their families, with varying degrees of support, in their own homes and communities. During the last decade, the Maternal and Child Health Bureau (MCHB) of the Federal Health Resources and Services Administration developed and implemented a series of strategies to ensure that services for children with special health-care needs, and their families, are accessible in a community-based system of care. A central tenet of this strategy is that every child with a special health-care need will have a medical home as