Appendix B

Workshop Speaker and Moderator Biographical Sketches

Susan Aarup, M.S., has 38 years of experience with independent living after discovering her Center for Independent Living in eighth grade. Ms. Aarup has a B.A. from Wright State University, an M.S. degree from Springfield College, and is currently attending the Lutheran School of Theology to study ministry and religion and hopes to graduate in 2017. Ms. Aarup has worked at four separate Centers for Independent Living and served as Program Director at Independence Network Center. She also worked for the City of Chicago for 11 years at the Mayor’s Office for People with Disabilities. She is currently a Peer Health Navigator and a single payer activist that believes health care should be a human right. She also serves as the co-coordinator of Chicago ADAPT and participates on the Governor’s Taskforce for Economic and Employment Opportunities for People with Disabilities. Disability rights are Ms. Aarup’s passion.

Toyin Ajayi, M.D., M.Phil., is the Chief Medical Officer at Commonwealth Care Alliance (CCA). In addition to overseeing clinical delivery and clinical operations at CCA, she is a practicing physician, serving as the primary care physician for elderly homeless and marginally housed CCA members cared for within an interdisciplinary team at Commonwealth Community Care, as well as a hospitalist on CCA’s shared inpatient service at Boston Medical Center. Prior to joining CCA in 2013, Dr. Ajayi was an attending physician at Boston Medical Center Department of Family Medicine and a clinical instructor at the Boston University School of Public Health. Her career and academic interests center around efforts to design, implement, and evaluate clinical interventions to improve the quality, patient-centeredness, and cost

of health care delivery in complex and multimorbid patient populations. Dr. Ajayi received her undergraduate degree from Stanford University, an M.Phil. from the University of Cambridge, and her medical degree from King’s College London School of Medicine. She completed her residency training at Boston Medical Center.

Marin P. Allen, Ph.D., is the Deputy Associate Director for the Office of Communications and Public Liaison (OCPL) and Director of the Public Information Office in the Office of the Director of the National Institutes of Health (NIH). OCPL is responsible for all phases of internal and external strategic communication. The Public Information Office is a focal point for health and science writing, health literacy, clear communication, plain language, cultural competency, and language access initiatives. It is also responsible for NIH programs and resources for the public, including regular publications in print and on the web: The NIH Record, NIH: News in Health, and Research Matters! The Public Information Office also manages the NIH Visitors Center and the NIH Nobel Laureate Hall, special events, and grantee public information office relations. Prior to 2004, Dr. Allen was the Communication Director and Public Liaison Officer for the National Institute on Deafness and Other Communication Disorders (NIDCD) at NIH. She led the NIDCD’s first communications, legislation, and policy office programs. Dr. Allen has 30 years of communications, public health education, outreach, and media relations experience. Before joining NIH, she directed public relations for Gallaudet University (GU) from 1988 to 1990. From 1981 to 1990, she was on the faculty and became a tenured full professor and chair of the Department of Television, Film, and Photography in the School of Communication at GU during her service there. Prior to GU, she was a media specialist with the White House Conference on Aging. At the beginning of her career, she was a faculty member in communications at the University of Maryland, College Park.

Katherine Bishop, M.P.A., is the Director of Program Development in the Division of Person-Centered Supports at the New York State (NYS) Office for People with Developmental Disabilities (OPWDD). Ms. Bishop has worked in the field of developmental disabilities for more than 30 years in positions of quality oversight, program leadership, and policy and service development. Ms. Bishop worked for the NYS Commission on Quality of Care and Advocacy for Persons with Disabilities in the Division of Quality Assurance for 17 years, where she oversaw investigative activities into abuse allegations, untoward deaths, and treatment reviews. In that role, she was a strong advocate for an accountable system and for quality improvement within the mental health system. Ms. Bishop moved

to NYS OPWDD in 2006, where she served as both Deputy Director and Director at the Capital District Developmental Disabilities Service Office responsible for state operated services for approximately 500 individuals and the community-based service system in a nine-county region. Ms. Bishop moved into the OPWDD central office in 2011 to work on planning and implementation of system transformation initiatives as the Director of Program Development in the Division of Person Centered Supports. Areas of primary focus for Ms. Bishop have been the development and implementation of the Coordinated Assessment System, the implementation of START (Systemic, Therapeutic, Assessment, Resource, and Treatment) Crisis Prevention and Response services, and the redesign and growth-focused activities for Self-Directed Services. These initiatives are foundational to the NYS system transformation focused on equity of service access, increased capacity for effective behavioral health treatment, and increased autonomy and self-determination for a system serving 130,000 individuals with intellectual and developmental disabilities.

Sherman Gillums, Jr., is the Executive Director of Paralyzed Veterans of America. Mr. Gillums began his military career in the Marine Corps 1 month after his high school graduation. During his 12-year military career, he served in various roles, including Drill Instructor at Marine Corps Recruit Depot, Parris Island, South Carolina, and Program Officer for Camp Pendleton’s new hand-to-hand combat system. He was appointed to the rank of Warrant Officer in 2000 and commissioned to Chief Warrant Officer in 2001. Four months after the September 11, 2001, attacks, as he prepared to deploy to Afghanistan with the 1st Marine Division, Mr. Gillums was involved in a tragic accident and became severely disabled, ending his military career at age 29. Subsequently, he received an honorable discharge from military service and went on to pursue a new career in disabled veteran advocacy. In 2004, Mr. Gillums joined Paralyzed Veterans of America as a benefits claims expert in San Diego, where he assisted veterans, families, and survivors with fighting for their entitlements from the U.S. Department of Veterans Affairs. He later became involved with the local Paralyzed Veterans chapter and went on to become the chapter’s president. He also worked as an appellate representative at the Board of Veterans’ Appeals in Washington, DC, before accepting the position of Associate Executive Director of veterans benefits. He was promoted to Deputy Executive Director in 2014 and presently serves as the organization’s Executive Director as of January 2016. He is a graduate student of the University of San Diego School of Business Administration and will complete his executive education at Harvard Business School this fall. He has testified before Congress as an expert witness on veterans benefits and has appeared on CNN, Fox, and C-SPAN on behalf of Paralyzed Veterans of America.

Susan M. Havercamp, Ph.D., received her doctorate at The Ohio State University Nisonger Center in clinical and mental retardation/developmental disability psychology. Dr. Havercamp’s research and clinical work focuses on physical and mental health issues in persons with developmental disabilities. She conducted research and provided direct clinical services to children and adults with developmental disabilities while on the faculty of the University of Medicine and Dentistry of New Jersey in the Division for Prevention and Treatment of Developmental Disorders and at the Center for Development and Learning, a Center for Excellence on Developmental Disabilities at the University of North Carolina at Chapel Hill. At the University of South Florida she focused on improving the health of persons with disabilities through educating health care providers and health promotion activities for children and adults with disabilities. She is currently an Associate Professor of Psychiatry and Psychology at The Ohio State University Nisonger Center, where she continues her work on health and health care for children and adults with disabilities.

Robert (Bob) E. Johnson, Ph.D., is Professor Emeritus at Gallaudet University, Washington, DC, where, until he retired in 2012, he was a Professor of linguistics and Assistant Dean of the Graduate School and Extended Learning. He holds a B.A. degree in psychology from Stanford University and a Ph.D. in anthropology from Washington State University. He is an anthropological linguist, interested in the phonological and morphological structure of signed languages and their function in deaf communities and their critical role in deaf education. He has examined the structures of a number of sign languages, including American Sign Language and the sign language of a Yucatec Maya community. He is co-author of the widely read monograph Unlocking the Curriculum: Principles for Achieving Access in Deaf Education and numerous papers on signed language structure and function. Much of his recent work has focused on the imperative of bilingualism in the education of deaf children and on the ways in which the educational and medical communities resist it.

Diane Kearns is a parent of a son with multiple disabilities and a community volunteer with a focus on services for special needs children. A commissioner on the Austin Mayor’s Committee for People with Disabilities, she advises the city council and city manager regarding problems affecting persons with disabilities in the Austin area. She also serves on the START (Systemic, Therapeutic, Assessment, Resource, and Treatment) Kids Managed Care Advisory Committee that advises the State of Texas Health and Human Services Commission on the establishment of a Medicaid managed health care program for children with special health care needs. In addition, Ms. Kearns is a board member and a former chairman of the board

for Sammy’s House, a nonprofit that provides services in an inclusive environment for children in Central Texas who are medically fragile or developmentally delayed. She was a speaker on the Panel of Family Caregivers at the 2014 Texas Respite Summit, presented by the Texas Department of Aging and Disability Services, and participated in the Personal Family Leadership Series developed by Texas School for the Blind and Visually Impaired and Texas Department of Assistive and Rehabilitative Services, Division for Blind Services. Ms. Kearns works as a Product Manager at a national telecommunications company.

Beth Marks, Ph.D., RN, is a Research Associate Professor in the Department of Disability and Human Development at the University of Illinois at Chicago, Associate Director for Research in the Rehabilitation Research and Training Center on Developmental Disabilities, and immediate past President of the National Organization of Nurses with Disabilities. Dr. Marks directs research programs on empowerment and advancement of persons with disabilities. She has published numerous articles and books related to health promotion, health advocacy, and primary health care for people with disabilities. She co-produced a film titled Open the Door, Get ’Em a Locker: Educating Nursing Students with Disabilities. She has also co-authored two books titled Health Matters: The Exercise and Nutrition Health Education Curriculum for People with Developmental Disabilities and Health Matters for People with Developmental Disabilities: Creating a Sustainable Health Promotion Program.

Karen L. Marshall is the Founder and Executive Director of the Kadamba Tree Foundation, a nonprofit serving family and friend caregivers. Ms. Marshall helped her parents face a variety of serious illnesses and aging issues, both as an in-home, primary caregiver and as a working, long-distance caregiver. Her experiences taught her about the value of self-care in effective caregiving and inspired her to establish the Kadamba Tree Foundation. In addition to offering education and support programs to family and friend caregivers of aging loved ones and loved ones with long-term illnesses and disabilities, Kadamba Tree’s mission also includes increasing communities’ access to evidence-based caregiver interventions. Ms. Marshall frequently speaks as a caregiver advocate and also helps organizations and governmental agencies develop and deliver caregiver outreach programs. She is a Caregiver Support Group facilitator for the Alzheimer’s Association as well as a Certified Program Leader of both the Powerful Tools for Caregivers and the Rosalynn Carter Institute for Caregiving’s Caring for You, Caring for Me programs. Ms. Marshall is also a certified interventionist and Master Trainer for the Rosalynn Carter Institute’s evidence-based Resources for Enhancing Alzheimer’s Caregiver’s Health program. As an attorney, she has

provided several hours of pro bono assistance to older Americans and their loved ones and is a volunteer presenter of the Alzheimer’s Association’s Legal and Financial Planning workshop.

Monika Mitra, Ph.D., is an Associate Professor at the Lurie Institute for Disability Policy, Heller School for Social Policy and Management at Brandeis University. She is also adjunct Associate Professor at the Department of Family Medicine and Community Health at the University of Massachusetts Medical School. Her research examines the health care experiences and health outcomes of working-age adults with disabilities, with a particular focus on the perinatal health of women with disabilities, violence victimization against people with disabilities, and disability-related disparities in health and access to care. She also has extensive experience in public health program development, evaluation, and implementation. Dr. Mitra is Program Chair of the Disability Section of the American Public Health Association (APHA), member of the APHA Disability Section Executive Committee, and member of the Disability and Health Journal editorial board. She also serves on the Massachusetts Health and Disability Partnership, the Massachusetts Pregnancy Risk Assessment Monitoring System Advisory Committee, and the Massachusetts Pregnancy to Early Life Longitudinal Data System Advisory Committee. Prior to joining Brandeis, Dr. Mitra was an Associate Professor in the Department of Family Medicine and Senior Program Director for the Disability, Health, and Employment Policy Unit at the Center for Health Policy and Research at the University of Massachusetts Medical School. Before then, she was a senior epidemiologist for the Office on Health and Disability at the Massachusetts Department of Public Health. She received her Ph.D. and M.A. from Boston University and her M.S. from Calcutta University, Kolkata, India.

Vanessa “Ness” Nehus, M.A., J.D., is the Principal Investigator for the Arkansas Disability and Health Program at Partners for Inclusive Communities. Partners for Inclusive Communities is Arkansas’s University Center on Disabilities and is a program of the University of Arkansas. Previously the program’s Director, she has been involved in the Disability and Health Program since 2002. Ms. Nehus has more than 30 years of experience in working with people with disabilities. Her experience in the field includes direct supportive care, case management, service coordination, policy development, promotion of universal design, and program development. She has worked to improve access for people with disabilities in health care, housing, education, and community living. Ms. Nehus received a B.A. in psychology from Hendrix College, an M.A. in psychology from the Uni-

versity of Arkansas, and a J.D. from the William H. Bowen School of Law at the University of Arkansas.

Michael Paasche-Orlow, M.D., M.P.H., is an Associate Professor of medicine at the Boston University School of Medicine. Dr. Paasche-Orlow is a general internist and a nationally recognized expert in the field of health literacy. Dr. Paasche-Orlow is currently a co-investigator with six funded grants that examine health literacy, including four intervention studies evaluating simplified information technologies for behavior change among minority patients with a range of health literacy levels. Dr. Paasche-Orlow’s work has brought attention to the role health literacy plays in racial and ethnic disparities, self-care for patients with chronic diseases, end-of-life decision making, and the ethics of research with human subjects. Dr. Paasche-Orlow is the Associate Program Director for the Boston University School of Medicine General Internal Medicine Academic Post-Doctoral Fellowship Program. Dr. Paasche-Orlow is also the director of the Health Literacy Annual Research Conference (http://www.bumc.bu.edu/healthliteracyconference).

Rosa Palacios is a Consumer Engagement Specialist with the Center for Consumer Engagement in Health Innovation at Community Catalyst. Prior to joining the Center, she served 12 years on the staff of Commonwealth Care Alliance (CCA) as a Consumer Involvement Coordinator and Stanford Chronic Disease Self-Management Specialist, where one of her major responsibilities was to implement and bring to scale the Chronic Disease Self-Management Program. She later served as head of CCA’s Department of Health Education and Caregiver Training. Ms. Palacios holds a T-Trainer Certificate for the Chronic Disease Self-Management Program and a Master Trainer certificate in the Diabetes Self-Management Program in both English and Spanish issued by Stanford University. She is also a Master Trainer for Healthy Eating for Successful Living in Older Adults. Ms. Palacios recently graduated from the National Practice Change Leaders program and Massachusetts Institute for Community Health Leadership Program and was awarded the Emanuel and Lilly Shinagel Scholarship at the Harvard University Extension School, Cambridge, Massachusetts.

Christine Ramey, M.B.A., RN, currently serves as the Deputy Director within the Office of Health Equity at the Health Resources and Services Administration (HRSA) in Rockville, Maryland. Her programmatic interests include working on health equity and health disparities issues that affect Hispanic and Latino populations. She serves as a representative for HRSA at the Health Equity Roundtable. Prior to joining HRSA, Ms. Ramey worked at the Peace Corps Headquarters in Washington, DC, where she

served as the Healthcare Resources Program Manager within the Office of Health Services. Ms. Ramey completed her M.B.A. at the University of Phoenix and received her B.S. in nursing from Marymount University in Arlington, Virginia.

Bernard M. Rosof, M.D., MACP, is at the forefront of national initiatives in the areas of quality and performance improvement. Following the completion of a fellowship in gastroenterology at the Yale University School of Medicine, Dr. Rosof practiced internal medicine and gastroenterology for 29 years. He is past Chair of the board of directors of Huntington Hospital (Northwell Health) and a current member of the Board of Overseers of the Health System. He is a past member of the National Quality Forum (NQF) board of directors and the Co-Chair of the National Quality Partnership (NQP) convened by the NQF to set national priorities and goals to transform America’s health care. The NQP was advisory to the former U.S. Department of Health and Human Services Secretary Kathleen Sebelius in the development of the National Quality Strategy. Dr. Rosof is the immediate past Chair of the Physician Consortium for Performance Improvement convened by the American Medical Association that continues to lead efforts in developing, testing, and implementing evidence-based performance measures for use at the point of care. He was a member of the Clinical Performance Measurement Committee of the National Committee for Quality Assurance and the Chair of the Physician Advisory Committee for UnitedHealth Group. He has chaired committees for the New York State Department of Health (NYS DOH), the Institute of Medicine, and the National Academies of Sciences, Engineering, and Medicine. He currently serves as the Chair of the National Academies’ Roundtable on Health Literacy, as well as the Chair of the NYS DOH Committee on Quality in Office-Based Surgery.

Melissa Simon, M.D., M.P.H., is the Vice Chair of Clinical Research, Department of Obstetrics and Gynecology; George H. Gardner Professor of Clinical Gynecology; Professor of obstetrics and gynecology, preventive medicine, and medical social sciences; and the Director of the Chicago Cancer Health Equity Collaborative at the Northwestern University Feinberg School of Medicine. Dr. Simon’s primary research interests are aimed at eliminating health disparities among low-income, medically underserved women across the life span. Integrating health services research with social epidemiologic models, Dr. Simon’s research focuses on interventions (such as patient navigation and community health outreach workers) that aim to reduce and eliminate such disparities. Within this context, Dr. Simon prefers to leverage culture and community to achieve these goals and thereby integrates a community-based participatory research framework

into her work. Dr. Simon leads the National Cancer Institute (NCI) Bio-specimen Management Program for Region 5, a multisite transdisciplinary partnership that aims to increase collaborative biospecimen research and improve minority and medically underserved populations participation and retention in biospecimen and clinical trial research. Dr. Simon also co-leads the NCI minority serving institution-comprehensive cancer center P20 center grant that unites Northeastern Illinois University with the Robert H. Lurie Comprehensive Cancer Center through social science research to reduce cancer disparities and through improving the pipeline of minority students and students interested in health disparities research. Dr. Simon received her M.D. from Rush Medical College (2000), had her residency at Yale-New Haven Hospital (2004), a Fellowship at Northwestern McGaw/Northwestern Memorial Hospital (2006), and is board certified in obstetrics and gynecology. She is a member of the National Academies of Sciences, Engineering, and Medicine’s Roundtable on the Promotion of Health Equity.

Eva Marie Stahl, Ph.D., is the Director of Community Catalyst Children’s Health Project at Community Catalyst, which focuses on ensuring children and their families have access to high-quality health care that contributes to their long-term wellness. Included in this work is the New England Alliance for Children’s Health (NEACH) that supports New England advocates working to advance a children’s health agenda through regional coordination and shared learning. In addition, Ms. Stahl coordinates efforts to advance and sustain children’s coverage in six states that make up the Community Catalyst Alliance for Children’s Health—this growing network strengthens cross-state learning and facilitates resource sharing. In her role, Ms. Stahl is responsible for providing and coordinating support for state advocates, including strategic coaching, policy analysis, campaign and coalition work, and learning platforms. She works to include voices from children’s health partners at both the state and national levels. Formerly, Ms. Stahl was a Policy Analyst at Community Catalyst, where she focused on Patient Protection and Affordable Care Act implementation and private insurance issues. In her current capacity, Ms. Stahl continues to work on issues related to private insurance and exchanges, essential health benefits, health literacy, and health care workforce shortages. Before joining Community Catalyst, she completed her Ph.D. in social policy at Brandeis University. During that time she worked for the National Academies of Sciences, Engineering, and Medicine and for the Agency for Healthcare Research and Quality. She holds a master’s degree from the Lyndon B. Johnson School of Public Affairs at The University of Texas at Austin and a bachelor’s degree from Colgate University.

Antonia M. Villarruel, Ph.D., RN, FAAN, is the Margaret Bond Simon Dean of Nursing at the University of Pennsylvania School of Nursing and Director of the School’s World Health Organization Collaborating Center for Nursing and Midwifery Leadership. As a bilingual and bicultural nurse researcher, Dr. Villarruel has extensive research and practice experience with diverse Latino and Mexican populations and communities and with health promotion and health disparities research and practice. She incorporates a community-based participatory approach to her research. Specifically, her research focuses on the development and testing of interventions to reduce sexual risk behaviors among Mexican and Latino youth. She has been the Principal Investigator (PI) and Co-PI of more than eight randomized clinical trials concerned with reducing sexual and other risk behaviors. As part of this program of research, she developed an efficacious program to reduce sexual risk behavior among Latino youth titled Cuídate! The program is disseminated nationally by the Centers for Disease Control and Prevention as part of its Diffusion of Evidence Based Interventions program and the Office of Adolescent Health.

In addition to her research, Dr. Villarruel has assumed leadership in many national and local organizations. She is a Co-Chair of the Strategic Advisory Council of the AARP/Robert Wood Johnson Foundation’s Center for Health Policy’s Future of Nursing Campaign for Action and serves on the board of the ABIM Foundation. She has received numerous honors and awards, including membership in the National Academy of Medicine and selection as a Fellow in the American Academy of Nursing.

Heather J. Williamson, M.B.A., Dr.P.H., is an Assistant Professor for the Department of Occupational Therapy at Northern Arizona University on the Phoenix Biomedical Campus. Clinically, she worked for years providing occupational therapy services for children with intellectual and developmental disabilities (IDDs). In her role as Associate Executive Director at United Cerebral Palsy of Tampa Bay, she was responsible for overseeing programs providing supports for both children and adults with IDDs, including early intervention, occupational therapy, physical therapy, speech therapy, supported employment, supported living, and respite services. She served as the Health Insurance Portability and Accountability Act Privacy Officer and led efforts that supported the successful 3-year accreditation of the Commission on Accreditation of Rehabilitation Facilitates. Dr. Williamson also worked in the field of public health, assisting in the development of the Injury Prevention Center at Arkansas Children’s Hospital, which focuses on preventing injuries to children through research, education, and policy initiatives. Dr. Williamson earned her bachelor’s degree in occupational therapy from the University of Florida, specializing in pediatrics; her M.B.A. from the University of South Florida with a specialty in marketing and management;

and her Dr.P.H. from the University of South Florida’s College of Public Health Department of Community and Family Health.

Tom Wilson is a Community Organizer of Health Care at Access Living, based in Chicago. He has worked with Access Living since 1990. He is passionate about moving people with disabilities out of nursing facilities and institutions and into the community. He has experience in personal assistant services, deinstitutionalization, long-term care and health care policy, and disability advocacy. Mr. Wilson served for many years as Team Leader of the Personal Assistant Services and Health Care Team. He helped advocate for and develop the de-institutionalization program that Access Living pioneered in 1997. He helped develop the Stepping Stones research and curriculum project in collaboration with faculty and students at the University of Illinois at Chicago Occupational Studies Department. Mr. Wilson continues to do policy work on health care. He also focuses on community mobilization for systems change and facilitates two consumer-based advocacy groups: the Taskforce for Attendant Services and the Independent Voices. Since 2010, he has been responsible for coordinating hundreds of consumers to advocate for disability rights in Springfield with state legislators. Mr. Wilson is also a longtime board member of the Health and Medicine Policy Research Group.

Silvia Yee, L.L.B., M.A., is a senior staff attorney at Disability Rights Education and Defense Fund (DREDF), where her work has included projects to increase physical and programmatic accessibility and disability awareness in the delivery of health care services, as well as affect litigation to increase access for people with disabilities in myriad aspects of public and private life. Ms. Yee maintains interests in health care reform, international disability rights, and models of equality. Prior to joining DREDF, Ms. Yee worked in private commercial practice in Canada and with the Health Law Institute at the University of Alberta, where she published on the topics of Canadian health care standards and the extent of the nursing profession’s legal authority. Ms. Yee received her B.M., M.A., and L.L.B. degrees from the University of Alberta. Following graduation from law school, she clerked with Justice William Stevenson at the Alberta Court of Appeal.

This page intentionally left blank.