Improving Systems of Care for Children and Youth with Special Healthcare Needs: Epilepsy and Newborn Hearing Screening Programs
Consistent with NICHQ’s continuing education policy, faculty for this conference are expected to disclose at the beginning of their presentation(s), any economic or other personal interests that create, or may be perceived as creating a conflict related to the material discussed. The intent of this disclosure is not to prevent a speaker with a significant financial or other relationship from making a presentation, but rather to provide listeners with information on which they can make their own judgments.
The following presenters and planners have no significant financial interests or other relationships to disclose:
Deborah Allen ScD is an associate professor in the Department of Maternal and Child Health of the Boston University School of Public Health. In addition to teaching on children with special health care needs, maternal and child health program planning and women's reproductive health policy, Dr. Allen conducts research and consults widely on services for children and youth with special health care needs. She is co-Principal Investigator of the Catalyst Center, which promotes financing of comprehensive services for children and youth with special health care needs. She also serves as part-time Executive Director of her state’s Consortium for Children with Special Health Care Needs. Before moving to BU in 2002, Dr. Allen directed the state Title V Children with Special Health Care Needs program in Massachusetts. Dr. Allen has an ScD degree in Maternal and Child Health and MS degrees in Health Policy and Management and Maternal and Child Health from the Harvard School of Public Health. While it is unlikely to be her day job in the immediate future, she is currently studying to become a certified yoga instructor.
Elizabeth Aquino is a writer living in Los Angeles with her husband and three young children. Her oldest daughter is sixteen years old and was diagnosed with infantile spasms, a particularly devastating form of epilepsy, at three months of age. Despite countless medications and treatments, her epilepsy is refractory and has caused developmental disabilities. She is the inspiration for much of Elizabeth's writing that has appeared in several literary journals, The Los Angeles Times newspaper, anthologies, Spirituality and Health magazine and a blog that reaches thousands of readers daily. Elizabeth was a founder of PACE, non-profit foundation that raises money for research and outreach for children with epilepsy and their families. She also serves on the board of the Epilepsy Foundation of Greater Los Angeles. In her "spare time," she works as a baker, crafting custom cakes, cupcakes and pastries.
Janet DesGeorges lives in Boulder, Colorado with her husband Joe and three daughters. Her youngest daughter, Sara, is hard of hearing. She is the Outreach Director for Hands & Voices National, and is the Executive Director of Colorado Families for Hands & Voices, which has a membership of 1,800 parents and professionals. Her professional interests include: Deaf Education Reform, The Medical Home Initiative for children with hearing loss, and parent involvement in systems development in education and health systems. Janet has presented to groups nationwide and internationally about the experiences of families as they journey through life with a child with deafness or hearing loss. Ms. DesGeorges has been involved for many years with the implementation of Universal Newborn Hearing Systems in many states, advocating for strong parent participation in systems building, as well as advocating for educational excellence for children who are deaf and hard of hearing. Ms. DesGeorges is the co-author of a chapter on educational laws for deaf/hard of hearing students, and many other publications.
Sharon Fleischfresser MD, MPH is a pediatrician and medical director of the Wisconsin Children and Youth with Special Health Care Needs (CYSHCN) Program in the Department of Health and Family Services. Her previous experience includes working as the medical director of an inner city community health center that serves predominately Latino and Southeast Asian families and as Maternal Child Health Director of a large urban health department. She co-chairs the Wisconsin Chapter-American Academy of Pediatrics (WIAAP) CYSHCN Committee and serves as a collaborator with the federal Maternal Child Health Bureau’s Medical Home State Leadership Initiative. She is a past recipient of the WIAAP Pediatrician of the Year Award for her work related to children with special needs.
Irene Forsman MS, RN has been in the Maternal and Child Health Bureau for more then two decades in a number of positions focusing on children with special health needs and their families. She has been responsible for HRSA/MCHB’s universal newborn hearing screening and intervention program since passage of the legislation. Ms. Forsman did her undergraduate work at Hunter College in New York City and formal graduate study at California State University in Los Angeles. Prior to joining the Maternal and Child Health Bureau, she was Assistant Professor of Pediatrics in Genetics at the University of Southern California School of Medicine and also held an adjunct appointment in the Department of Nursing at California State College in Los Angeles.
Carolyn Green MD is currently Associate Professor and Medical Director at The Children’s Hospital in Aurora, CO. She trained as a pediatric neurologist with board certification in neurology and child neurology. Dr. Green has expertise diagnosing and caring for children at risk for or with development disabilities. In particular she has extensive experience managing the needs of children with cerebral palsy and/or complex chronic conditions. As part of patient care Dr. Green has a special interest in the role of community based organizations and their role in medical home for children with complex healthcare needs.
Charles J. Homer MD, MPH co-founded the National Initiative for Children's Healthcare Quality in July 1999 and he currently serves as the organization's President and CEO. He is an associate professor of the Department of Society, Human Development and Health at the Harvard University School of Public Health and an associate clinical professor of pediatrics at Harvard Medical School. He was a member of the third US Preventive Services Task Force from 2000-2002 and served as chair of the American Academy of Pediatrics Committee on Quality Improvement from 1999-2001 and its Steering Committee on Quality Improvement and Management from 2001-2004. He obtained his bachelor’s degree from Yale University, his medical degree from the University of Pennsylvania, and a master’s degree in public health from the University of North Carolina at Chapel Hill. Dr. Homer serves as a member of the Institute of Medicine's Pediatric Health and Quality Measurement Committee specified in the 2009 CHIPRA legislation; chairs the Children’s Measurement Advisory Panel for NCQA; and co-chaired the National Quality Forum (NQF) Child Outcomes Steering Committee from 2009-2010. He is a technical advisor to the Patent Centered Medical Home Initiative of the Commonwealth of Massachusetts, and also serves on the Performance Measurement Expert Panel of the Commonwealth of Massachusetts’ Health Care Quality and Cost Council (HCQCC).
CAPT Lynda Honberg MHSA has over 30 years experience in the private and public health sectors, and is recognized as an expert on the issues of improving the financing and care for special populations. In her current position, Ms. Honberg is responsible for several programs focused on children with special health care needs, including a new federal initiative to improve access to care for children and youth with epilepsy. She works with a wide range of stakeholders, including family and youth groups of children with disabilities, state Medicaid and Title V agencies, and providers. CAPT Honberg’s other positions within the Public Health Service include the HIV/AIDS Bureau and the Bureau of Primary Health Care, where she developed training and technical assistance programs for community health centers, health care for the homeless programs and Ryan White C.A.R.E. Act funded community based programs. In the private sector, Ms. Honberg worked for eight years as the Director of Operations for the George Washington University Health Plan of Washington, D.C. where she was responsible for provider relations, member services and health center operations. Her other experiences include developing an IPA for Blue Cross-Blue Shield of the National Capital Area and advising employers and unions on health benefit packages. Lynda has a Masters in Health Services Administration from the University of Michigan School of Public Health and Bachelors in Health Education from State University of New York at Cortland. She is a parent of a child with special health care needs and has been a leader of a parent support group.
Shirley Russ MB, ChB, MRCP, FRACP, MPH, MD is Associate Clinical Professor of Pediatrics, UCLA in the Department of Primary Care Pediatrics at Cedars-Sinai Medical Center. Trained as a pediatrician in both England and Australia, Dr. Russ completed her Fellowship in Developmental/ Behavioral Pediatrics at Royal Children’s Hospital, Melbourne, Australia. Dr. Russ was awarded a National Health and Medical Research Council Public Health Scholarship to implement and evaluate the statewide Victorian Infant Hearing Screening Program. At Cedars-Sinai, Dr Russ was medical director of Children’s HEALTH, a school-linked project aimed at linking children with a range of developmental and behavioral challenges, including hearing loss, with appropriate services. She is currently a member of the Executive Committee of the Academic Pediatrics Association (APA) Research Committee. In 2006 Dr Russ co-chaired the National Initiative for Children’s Healthcare Quality (NICHQ) eight-state, learning collaborative “Reducing Loss to Follow-Up after Newborn Hearing Screening by working through the Medical Home” funded by the US Health Resources Services Administration (HRSA) Maternal and Child Health Bureau (MCHB).
Karl White PhD is a Professor of Psychology at Utah State University and the founding Director of the National Center for Hearing Assessment and Management (NCHAM). In addition to his teaching and mentoring of graduate students, Dr. White has conducted numerous research projects and has published extensively about the issues and evidence related to implementing and improving the efficacy of Early Hearing Detection and Intervention (EHDI) programs. Projects currently underway at NCHAM are focused on developing more effective hearing screening and intervention programs through research, improving public health information systems, training and technical assistance, and information dissemination. More about NCHAM activities in these areas are available at www.infanthearing.org. Dr. White also has extensive experience with policy issues related to providing services to children with special health care needs. Prior to his work at NCHAM, he was the Director of Research and Development at the National Technical Institute for the Deaf, the Director of Research and Evaluation at the Center for Persons with Disabilities, and the Director of the Early Intervention Research Institute at Utah State University.
The following presenter has financial interests or other relationships to disclose:
Catherine Tantau BSN, MPA is an internationally recognized authority on access, efficiency and flow systems in health care. She led the creation and implementation of Advanced Access and developed the Access and Office Efficiency Internal Collaborative Model. This model is designed for healthcare organizations to work internally and collaboratively with other groups to improve access and medical office flow. Ms. Tantau has worked with hundreds of health care organizations in the U.S. and Europe using this model. Ms. Tantau speaks across the U.S. and Europe on various health care topics. She has been a keynote speaker for a number of institutions, including the Mayo Clinic, Dartmouth Hitchcock Medical Center, the Alaska Native Health System, and the United States Navy. She has written numerous articles published in the Joint Commission on Accreditation of Healthcare Organizations Journal of Quality Improvement, the Managed Care Quarterly, The Journal of Ambulatory Care Management and the American Academy of Family Physicians Journal: Family Practice Management. Ms. Tantau received a Bachelor’s degree in Sociology from the University of California at Santa Barbara, a Bachelor of Science in Nursing from California State University, Fresno, and completed her Masters in Public Administration Health Services Administration at the University of San Francisco.