NCBDDD Outcomes and Developmental Data Assistance Center for EHDI (ODDACE) Programs

Description

The Centers for Disease Control and Prevention (CDC), Early Hearing Detection and Intervention (EHDI) program supports the success of all children who are deaf or hard of hearing (D/HH) in the United States by helping to ensure they receive a newborn screening, early diagnosis, and timely intervention services. Without timely screening, diagnosis and intervention, children who are D/HH lose valuable time in gaining the skills that will put them on a trajectory to have language on par with their hearing peers in kindergarten and be ready to succeed in school. Additionally, among children who are D/HH, delays in language development are more difficult to remediate with late diagnosis and intervention. While collaborative efforts by CDC, states, and other partners have helped lead to the early identification of thousands of children who are D/HH each year, their developmental and language outcomes are often unknown, and these data are not routinely collected by CDC or state EHDI programs. Furthermore, it is currently unclear what actions beyond early identification should be taken by public health to help reduce adverse consequences of hearing loss and ensure that children who are D/HH are ready for success in early childhood. The current lack of public health capacity to document and assess the intervention services and associated outcomes of early-identified children who are D/HH at the state and national level makes it challenging to: Assess the developmental progress to ensure all children who are D/HH are achieving age-appropriate milestones and are ready for success in early childhood; Identify strategies, in addition to those beyond early identification, to help assess and reduce adverse consequences of hearing loss; Assess and document the success and impact of EHDI activities across the United States. As the first step toward minimizing significant language delays in children who are D/HH, the main goal of state EHDI programs is to ensure the hearing screening of all children before 1 month of age, receipt of recommended diagnostic services before 3 months of age for those not passing the hearing screening, and enrollment into early intervention for those identified with a permanent hearing loss before 6 months of age. Although there has been a significant increase in the number of newborns receiving their hearing screen before one month of age and number of infants diagnosed as D/HH before 3 months of age, over 1,200 infants annually (about 20%) either did not receive or were not documented to have received intervention services. For children diagnosed as D/HH and enrolled into intervention services, it is often not possible for State EHDI programs to gather, analyze, and use early intervention and outcomes-related data. This is because information about services received (initiation/quantity/quality/specific type of intervention) and outcomes beyond enrollment in intervention services are not routinely available and/or shared with public health. These data are essential to strategic partners at all levels, and to CDC, in their surveillance efforts to assess and ensure optimal outcomes among children who are D/HH. Specifically, the availability of these data to public health can help to advance the practice of state EHDI programs, drive quality improvements, and help CDC-EHDI provide targeted technical assistance beyond screening and diagnosis to state programs. NCBDDD can take a leading role in this effort by providing states with the opportunity and tools needed to gather, analyze, and use standardized and relevant patient-level intervention and outcomes data for infants diagnosed as D/HH. Previous projects have shown that it is possible for one center to facilitate the gathering, analysis, and use of outcomes related data across multiple states. This included helping programs obtain relevant intervention data and use standard tools to help assess outcomes. Currently, many states are interested in intervention, and outcomes-related data but lack the capacity to routinely collect these data for children who are D/HH. To further assist states and children who are D/HH, CDC EHDI proposes to establish and support a developmental outcomes data center referred to as the Outcomes and Developmental Data Assistance Center (ODDACE). This center will focus on providing guidance and technical assistance to a select number of states on the gathering, analysis and practical application of intervention and outcomes data. This is intended to help ensure all D/HH children are able to receive appropriate intervention services and reduce adverse consequences of hearing loss, to support their success in early childhood. The center will serve as an extension of the CDC EHDI team and complement current initiatives to expand the capacity of states to collect and use patient-level data to help ensure the success of children who are D/HH. This proposed center will directly support CDC EHDI’s public health surveillance efforts and its use of these data to inform and promote practices to help ensure children are ready for success in early childhood by: Gathering intervention and outcomes-related data in a standardized way to expand current EHDI public health surveillance activities; Analyzing intervention and outcomes data across states to assess provision of intervention services and outcomes; Identify and document factors that impact the outcomes among children who are D/HH (e.g., frequency, type, and quality of intervention) Using data to inform decisions and practices, optimize interventions, and support improved health outcomes by reducing adverse consequences of hearing loss and help ensure children who are D/HH are ready to succeed in school and beyond. As part of these efforts ODDACE will be responsible for working with and supporting participating states to foster and strengthen collaboration and engagement among strategic partners that serve children who are D/HH, and their families. Activities include, but are not limited to: Identify relevant data items and standardize definitions and measures related to intervention, outcomes and kindergarten/school readiness among children who are D/HH. Strengthen public health surveillance capacity to collect and use timely and standardized data on intervention, outcomes, and kindergarten/school readiness. Facilitate family engagement (as needed) to help obtain necessary consents in accordance with federal privacy laws to gather timely intervention-related data on children who are D/HH. Promote and foster coordination and collaboration between participating local/county, state EHDI and early intervention programs related to public health surveillance for intervention and outcomes. Develop and support the use of innovative methods to facilitate the timely and efficient collection and reporting of intervention and outcomes related data. Provide assistance to participating states in the analysis of data to assess kindergarten readiness and the use of findings to inform policy decisions to help children who are not performing on par with their hearing peers. Support the sharing and use of timely data among strategic partners at all levels, including CDC, state EHDI programs, county/local programs, families, intervention service providers, policy makers, and researchers. Demonstrate the benefits of sharing intervention and outcomes-related information with public health programs. Identify modifiable factors that may influence outcomes, beyond meeting the 1-3-6 months timeline. Inform and help educate providers and families across the EHDI continuum of care.

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