2016-2017 Friends Executive Committee Nominees

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Secretary

Jennifer Bolden Pitre, Family Voices

Jennifer Bolden PitreJennifer Bolden Pitre is a Parent Leader and the Mother of youth with special health care needs. Jennifer is based in Cherry Hill, NJ where she works for Family Voices as the Program Coordinator on several Alliance for Innovation on Maternal and Child Health (AIMS) grants & also as the Family Liaison to the Friends of the National Center Birth Defects and Developmental Disabilities.

A resident of New Jersey, Jennifer has an extensive background in Labor and Developmental Disabilities. Jennifer previously worked for the AMCHP, where she served as the Senior Program Manager, CYSHCN. Prior to AMCHP, Jennifer served as Director of SPAN’s State Implementation Grant for CYSCHN (D70) from 2009-2012 and Director of the SIG-ASD/DD grant from 2010-2012.

A former Assistant Attorney General for Louisiana, Jennifer returned to New Jersey in 1999.   In 2000, she served as Assistant Director of the NJ Division on Civil Rights, Bureau of Prevention.  From 2001-2007, she served as a Deputy Attorney General, representing the NJ Department of Labor, where she received a Notable Commendation for Outstanding Representation of the Division of Vocational Rehabilitation.

Jennifer was an AMCHP Family Scholar in 2010 & 2011, was selected as a Children’s Hospital of Philadelphia CHOP LEND Fellow in 2011, earned a certificate in Public Health Leadership from the MCH Public Health Leadership Institute – Chapel Hill in 2012, served as an AMCHP Family Mentor and also attended the Georgetown Leadership Institute.

Jennifer is retired from the practice of law in the state of Louisiana, and has been licensed in New Jersey since 1995.

 

Communications Chair

Shannon M. Haworth, Association of University Centers on Disabilities

Shannon HaworthShannon M. Haworth is a Program Manager for the Public Health team at Association of University Centers on Disabilities (AUCD). Working under the supervision of the Director of Public Health she implements capacity development activities and technical assistance for the AUCD network, under a cooperative agreement with the Centers for Disease Control and Prevention (CDC) & National Center on Birth Defects and Developmental Disabilities (NCBDDD). She most recently worked as the Senior Program Specialist on the LEND team at AUCD.

Before coming to AUCD she worked at the Partnership for People with Disabilities as the Project Manager for the Virginia state autism implementation grant. She is a former Virginia LEND (Leadership Education in Neurodevelopmental Disabilities) trainee.

Shannon has a Master’s degree in Applied Behavior Analysis, and a graduate certificate in Autism from Ball State University. She has also earned a Post Baccalaureate Graduate Certificate in Disability Leadership from Virginia Commonwealth University.

Member at Large (3 open seats)

Patrick Johnson, American Academy of Pediatrics

Patrick Johnson is an Assistant Director for Federal Affairs at the American Academy of Pediatrics, covering a range of issues including children with disabilities, newborns and infants, school health, sports medicine, infectious diseases, military health care, health information technology and medical liability. Mr. Johnson also helps lead AAP’s appropriations efforts. Prior to joining AAP in 2011, Mr. Johnson worked on Capitol Hill for six years, serving as a Legislative Assistant for Health Affairs to three Delaware Senators: Joe Biden, Ted Kaufman and Chris Coons. Prior to his work on Capitol Hill, Mr. Johnson worked at the Health Policy Tracking Service at the National Conference of State Legislature for eight years, tracking and monitoring state legislative activity in Medicaid, the State Children’s Health Insurance Program and other state-funded health care programs.

 

Jane Charles, Medical University of South Carolina

Jane CharlesI am a Developmental-Behavioral Pediatrician in the Department of Pediatrics, Division of Developmental-Behavioral Pediatrics at MUSC. I am an active clinician, researcher, and educator, and I specialize in the fields of Neurodevelopmental Disabilities focusing on Autism Spectrum Disorder and Intellectual Disability and comorbid disorders such as epilepsy. I manage a diagnostic clinic for children suspected of ASDs and provide follow up and medication management for children into adulthood. I am the director of our division’s Family Support Team which provides financial, behavioral, and educational support to “fill in the gaps” for families struggling to care for a child with a developmental disability. A new initiative is a formal Transition Program for children aged 13 years and up which will be spearheaded by the Family Support Team. From 2000 to 2015, I was the PI for the South Carolina Autism and Developmental Disabilities Monitoring Network (SC ADDM), funded by the Centers for Disease Control. This project provides ongoing surveillance for ASDs and intellectual disabilities in South Carolina. Through this long term registry project, we keep in close contact with these families throughout the state. I have received research funding as PI or co-Investigator for a variety of grants exploring issues related to developmental disabilities. Over the course of my professional career, I have mentored two doctoral students, four masters level students and 12 Developmental/Behavioral Pediatric Fellows.

Barbara Kornblau, Coalition for Disability Health Equity

Barbara KornblauBarbara L. Kornblau, J.D., O.T.R., FAOTA, is an attorney, a health policy wonk, founder of the Coalition for Disability Health Equity, and a Professor of Occupational Therapy at Florida A&M University, where she teaches by distance. She previously served as Director of Health Learning for the National Blood Clot Alliance under a grant from NCBDDD.

She currently serves as the Policy Chair for the Disability Section of the American Public Health Association, and a consultant to the United Spinal Association’s grant funded “Pathways to Employment Program.” She serves on PCORI’s Advisory Panel on Addressing Disparities. A former Robert Wood Johnson Foundation Health Policy Fellow for U.S. Senators Tom Harkin (D-IA) and Jay Rockefeller (D-WV), Barbara also served as a government relations and health policy consultant to Special Olympics, International. She was instrumental in advocating for the disability public health sections of the Affordable Care Act.

Barbara is a past president of the American Occupational Therapy Association, a former Dean of the School of Health Professions and Studies at the University of Michigan-Flint, and a Professor of Occupational Therapy and Public Health at Nova Southeastern University. She is widely published in disability and health policy and advocacy, and has written and organized many evidence-based sign-on letters. Most importantly, she is a person with a disability and multiple chronic conditions, who brings that perspective to all of her advocacy efforts in the Metro DC area. And, she has 6 children with disabilities, all of whom have benefitted from programs within NCBDDD’s purview.

Kate Taft, Association of Maternal & Child Health Programs

Kate Taft Kate Taft, MPH, is the Senior Program Manager for Children and Youth with Special Health Care Needs (CYSHCN) at AMCHP and assumes a lead role on issues surrounding CYSHCN, birth defects and developmental disabilities and early childhood. Specifically, she manages AMCHP’s grant portfolio and budget related to autism spectrum disorders and other developmental disabilities (ASD/DD). This includes the State Public Health Autism Resource Center (SPHARC), AMCHP’s comprehensive resource center for state Title V programs and others interested in improving systems for children and youth with ASD/DD and their families.  Ms. Taft has over ten years’ experience working on issues that affect children’s health, such as early childhood development, mental health, and injury prevention, at the public health and individual levels. She also has coordinated the Child Fatality Review Team in Suffolk County, MA. Prior to joining AMCHP, Ms. Taft worked at the Association of Schools of Public Health (ASPH), providing support to academic public health including the Association of Teachers of Maternal and Child Health and the ASPH Maternal and Child Health Council. She received her Master of Public Health Degree with a concentration in Maternal and Child Health from the George Washington University, and a Bachelor of Arts Degree in Psychology from the College of William and Mary.

Karl D. Cooper, American Association on Health and Disability

Karl D. Cooper is an attorney and disability advocate and has spent most of his professional career addressing the needs of individuals with disabilities. Since October 2013, he has been the Project Manager at the American Association on Health and Disability for the National Disability Navigator Resource Collaborative (NDNRC) where he provides technical assistance to navigators and other enrollment specialists as they help persons with disabilities enroll for health insurance through the Affordable Care Act marketplaces. In this role, he also advocates for the needs of people with disabilities who are enrolling for health insurance coverage in the marketplace. Before that, he was a Policy Assistant at the National Disability Rights Network (NDRN) and a Policy Associate at the National Association of States United for Aging and Disabilities (NASUAD) in Washington, DC. Prior to moving to DC in 2012, he practiced law for 14 years in the greater Philadelphia area, opening his own firm in 2006 where he was able to devote time to pro-bono advocacy for those affected by physical and developmental disabilities. As part of that work, he helped consumers navigate the complex areas of health, employment and education, drawing on his own personal experiences as a person with physical disabilities. Presently, in addition to his work with the NDNRC, Karl also serves on the Maryland Health Benefit Exchange’s Standing Advisory Committee and the Executive Committee for the Disability Section of the American Public Health Association (APHA). Karl received his law degree from Villanova University School of Law in 1997 and a BA in Communications/Political Science from Cedarville University in 1994.

 

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