Improving Systems of Care for Children and Youth with Special Healthcare Needs: Epilepsy and Newborn Hearing Screening Programs

Project Partners

The Maternal and Child Health Bureau (MCHB) is a component of the Health Resources and Services Administration (HRSA) within the Department of Health and Human Services (DHHS).  The mission of the MCHB is to provide national leadership in partnership with key stakeholders, to reduce disparities, assure the availability of quality care, and strengthen the nation's maternal and child health (MCH) infrastructure in order to improve the physical and mental health, safety, and well-being of the MCH population - all women, infants, children, adolescents and their families, including fathers and children with special health care needs (CSHCN). 
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National Center for Hearing Assessment and Management (NCHAM)
The goal of NCHAM (pronounced "en-cham") at Utah State University is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. NCHAM's research, training, and technical assistance activities contribute to this goal by working to achieve the following objectives: * Every child born with a hearing loss is identified before 3 months of age and provided with timely and appropriate intervention by 6 months of age. * Every family of an infant with hearing loss receives culturally-competent family support as desired.  * All newborns have a "medical home."  * State Departments of Health have effective newborn hearing screening tracking and data management systems which are linked with other relevant public health information systems. 
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The Epilepsy Foundation
The Epilepsy Foundation works to ensure that people with seizures are able to participate in all life experiences and to prevent, control and cure epilepsy through research, education, advocacy and services. It is a 501(c)(3) nonprofit organization governed by a national voluntary board of directors that includes individuals with epilepsy, parents and relatives of individuals with epilepsy, clinicians, researchers, legal advocates, and leaders in business and the health care industry. Scientific and medical programs are overseen by a Professional Advisory Board (PAB) composed of leading experts in the field of epilepsy. The Epilepsy Foundation’s nationwide network of 54 independently incorporated affiliates provide a broad range of community-based services designed to increase awareness among health care providers and community agencies and improve the quality of life of people with epilepsy, and their families. The Epilepsy Foundation and its affiliate network have worked together since 1968 to identify issues and create strategies to support a national agenda to improve the quality of life for people with epilepsy and their families.
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