Although it's safe to say that every parent of a child with complex disabilities is indeed an advocate, many of them have also distinguished themselves in advocating in a larger arena. Many of our showcased advocate heroes started out as parents, exceptional parents for sure. They combined their efforts in becoming teachers, therapists, counselors, lawyers, healthcare providers, researchers and activists. This special brand of advocates—along with all the others we honor—will always have a special place in the disability movement, not only for what they have done, but also for those they have inspired.
On behalf of EP Magazine, its Editors, the EP Editorial Advisory Board, and a group of our peers in the disability field, we congratulate and thank our 50 Advocate Heroes for their tireless work in support of the special needs community.
WILLIAM P. (BILL) ALFORD, MA, JD
“It has been an extraordinary privilege and joy to work, as a volunteer, with and on behalf of persons with special needs, over the last several decades. They and their families have taught me so much and the bonds of friendship and mutual respect formed are enduring. The world would be so much better off if it appreciated their contributions – and so we must keep working toward that end.”
William P. (Bill) Alford, MA, JD, is the founding Chair of the Harvard Law School Project on Disability, which since 2004, has worked, on a pro bono basis, on disability law and policy in China, Bangladesh, the Philippines, Vietnam, the United States and several other nations. He has also long been involved with Special Olympics International (which serves individuals with intellectual disabilities in more than 180 nations), having first been elected to its board in 2005, and now serves as Lead Director and Chair of the Executive Committee of the board. In 2008, Special Olympics honored him for his work for persons with intellectual disabilities in China.
Mr. Alford is a graduate of Amherst College (B.A. magna cum laude), the University of Cambridge (LL.B.), Yale University (M.A. in History and M.A. in Chinese Studies) and Harvard Law School (J.D.). He was awarded an honorary doctorate in law by the University of Geneva in 2010, has been an honorary professor at Renmin University of China and Zhejiang University – and was a recipient of the Li Buyun Prize of the Shanghai Institute of Finance and Law in 2018; the American Society of International Law Certificate of Merit for the Best Specialized Work in International Law in 2020; and a National Order of Merit from the President of Ecuador in 2021 for his work on disability.
ROBERT PATRICK (BOB) CASEY, JD, U.S. SENATOR
“The Americans with Disabilities Act affirmed the rights of people with disabilities: to be included in all aspects of American society, to be economically self-sufficient, to live independently, and to have an equal opportunity to pursue one’s dreams.
But a declaration of rights without resources isn’t enough. We must put in place the services and support for people with disabilities to exercise those rights. That means tearing down barriers to economic success like I did when I worked to pass the ABLE Act, which makes it possible for people to save for the future and not risk losing their federal disability benefits. It also means fighting to bolster home-based services during a pandemic so that people with disabilities aren’t forced to live in congregate settings where they are more likely to be exposed to COVID.
In my role as senior U.S. Senator from Pennsylvania, I will always support the rights of people with disabilities and fight to ensure they have the resources necessary to make those rights a reality.”
United States Senator Robert Patrick (Bob) Casey, Jr. fights every day for Pennsylvania families. He is a strong advocate for policies that improve the health care and early learning of children and policies that will raise wages for the middle class. Senator Casey serves on four committees including the Senate Finance Committee, Senate HELP Committee and Senate Select Committee on Intelligence. He is also the Chairman of the Special Committee on Aging, where his agenda is focused on policies that support seniors and individuals with disabilities.
Senator Casey and his wife, Terese, live in Scranton and have four adult daughters.
Geraldine (GERRI) Collins-Bride, RN, MS, ANP-BC, FAAN & Lucy Crain, MD, MPH, FAAP
“Advocacy for people with special needs has been the focus of my career as a primary care clinician and educator. Very early in my graduate nurse practitioner training, I discovered the massive health inequities of people with developmental and psychiatric disabilities, both in the healthcare delivery system and in our educational training programs. It has been, and continues to be my mission to advocate for inclusion, quality and equity of healthcare for this population through mentoring, teaching and practice. Advocacy is a necessary and powerful tool for promoting change.” (Gerri Collins-Bride)
Gerri Collins-Bride, RN, MS, ANP-BC, FAAN, is an adult nurse practitioner and Professor Emeritus in the University of California, San Francisco (UCSF) School of Nursing where she is the Co-director of the Adult Gerontology Primary Care Nurse Practitioner program. For over 35 years she has been practicing in General Internal Medicine at UCSF as a primary care provider for adults with developmental and psychiatric disabilities.
Ms. Collins-Bride is a founding member of the Redwood Coast Regional Center Telemedicine "TACT" team and for the past 20 years, has co-ed the annual CME course on “Developmental Disabilities: An Update for Health Professionals” with her partner and treasured colleague, Dr. Lucy Crain.
“As a pediatrician with a university-based primary care practice which welcomed children and youth with disabilities, I found the majority of my medical and pediatric colleagues inadequately informed about current diagnostic and resource needs of their patients with disabilities. It became my mission, in practice and after retirement, to advocate for children and adults with disabilities and special needs and to fill in the gaps of pediatric training by providing continuing medical education (CME) of healthcare clinicians with an annual CME conference, now approaching its 21st year: Developmental Disabilities: Update for Health Professionals. The success of our interdisciplinary conference would not have been possible were it not for a terrific co-chair (Gerri Collins-Bride, UCSF Adult Nurse Practitioner), dedicated parent advocates, self-advocates, and the Americans with Disabilities Act, all demanding informed respect and individualized support for people with disabilities.” (Dr. Lucy Crain)
Lucy Crain MD MPH FAAP, is Clinical Professor of Pediatrics Emerita at the University of California San Francisco; Adjunct Clinical Professor, Stanford University. Dr. Crain is originally from a small town in Kentucky and earned B.A. and M.D. degrees from the University of Kentucky. Moving to Seattle for pediatrics residency at the University of Washington was followed by a year of service at Presbyterian Hospital in Daegu, Korea, and an MPH at UC Berkeley before settling in San Francisco.
Dr. Crain practiced primary care and developmental pediatrics at UCSF for 30-plus years, and another 10 years in the Child Development Clinic at Lucile Packard Children’s Hospital at Stanford University. She and her husband have two grown children and two grandsons and have called San Francisco home for the past 50 years. A past member of the Board of Directors of the American Academy of Pediatrics, Dr. Crain remains actively involved in a number of local and national advocacy efforts for people with disabilities.
MARTHA E. (MARTY) FORD, JD
“I came to this field because my younger brother, Jud, was born in 1956 with profound intellectual disability and autism. Long before the law establishing the right to a free, appropriate, public education, he was expelled for disability-related behavior from a public, segregated, special education school.
I believe that each person has a role – a unique and important role – in their own time and in their own place, and given the circumstances with which they are faced. The joining of our efforts into a larger whole, working together, is what can make us an unstoppable force with impacts well beyond our immediate surroundings.
In our role as advocates, working together, we must be eternally vigilant – we must never rest on policy achievements of the past, but must protect them from opponents who would destroy them, and we must continually look forward for what still needs to be done.”
Marty Ford, JD, is a Senior Advisor in Public Policy at The Arc of the United States, a national community-based organization advocating for and serving people with intellectual and developmental disabilities (IDD) and their families. Ms. Ford is a recognized leader in federal public policy affecting people with disabilities, and with 37 years of experience representing The Arc on Capitol Hill, and before federal agencies in long-term services and supports, Medicaid, Social Security, Supplemental Security Income (SSI), and other disability issues.
She worked extensively on numerous Medicaid issues of importance to individuals with IDD and their families, including the development of the law around special needs trusts that are allowed for certain Medicaid and SSI beneficiaries, and the ABLE program that allows people in certain circumstances to save funds without impacting their Medicaid or SSI eligibility. She also successfully co-led major efforts to save the SSI program for children with disabilities when it was under major attack in Congress and in the press and to save the Medicaid program for people with disabilities from block grants or other devastating changes and cuts.
She worked on numerous other policy issues including: discriminatory removal of life-sustaining food and hydration based on disability; prohibition of the death penalty for people with ID; discrimination against people with IDD in the provision of healthcare; guardianship and less restrictive alternatives such as supported decision-making; protection from discrimination against people with IDD under the Americans with Disabilities Act; and the inclusion of long-term supports and services in the Affordable Care Act.
Ms. Ford received her J.D. from the George Washington University National Law Center; M.S. in Communications Design from Pratt Institute; and B.A. from the University of Virginia. Her brother, Jud, has been a guiding force throughout her life.
Susan M. Havercamp, PhD, FAAIDD, NADD-CC
“I believe that health is closely related to quality of life. People with disabilities have a right to make informed health choices and to receive high quality, respectful healthcare. In my disability and health work, I have had the privilege of teaching people with disabilities and their families about health, in addition to teaching healthcare professionals about caring for patients with disabilities. I strongly believe that education is the solution to many health inequities people with disabilities face.”
Susan M. Havercamp, PhD, FAAIDD, NADD-CC, directs the Centers for Disease Control and Prevention (CDC)-funded Ohio Disability and Health Program, a state, capacity-building program to improve the health of Ohioans with disabilities. In this role, she works closely with the Ohio Department of Health, the University of Cincinnati University Center for Excellence on Developmental Disabilities, and the Ohio Colleges of Medicine Government Resource Center. This program contributed to our understanding of health disparities for people with disabilities, developing inclusive health promotion programs for people with disabilities, and providing disability training for physicians, nurses, and other health professional students and practitioners.
Dr. Havercamp is the Principal Investigator of the Rehabilitation Research and Training Center to improve the health and function of adults with intellectual and developmental disabilities and co-occurring mental health conditions. She serves the disability field as a consulting editor for Intellectual and Developmental Disabilities, the Disability and Health Journal, and Inclusion, and was a founding member of the Student and Early Career Professional Committee. She is past president of the American Association on Intellectual and Developmental Disabilities and the Alliance for Disability in Health Care Education.
TAMAR HELLER, PhD
“Advocacy for and with people with disabilities has been a guiding focus of my research, teaching and organizational activities. It is the motivation behind the national Sibling Leadership Network, which I co-founded, and the research I have been conducting on policies and practices that promote the health and community inclusion of people with disabilities.”
Tamar Heller, PhD, Distinguished Professor, heads the Department of Disability and Human Development at the University of Illinois, Chicago (UIC) and its University Center of Excellence in Developmental Disabilities. She also directed the Rehabilitation Research and Training Center (RRTC) on Developmental Disabilities and Health and the Family Support Research and Training Center. Her research focuses on health and long-term services and supports for individuals with disabilities and their families through the life course.
Dr. Heller serves on the executive council, directs its publication committee, and is Vice President of the Americas for the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). She was President of the Association of University Centers on Disabilities (AUCD) board, a delegate to the 2005 White House Conference on Aging, and co-founder of the national Sibling Leadership Network.
Dr. Heller’s awards include the 2009 Arc of Illinois Autism Ally for Public Policy Award; the 2008 Lifetime Research Achievement Award, IASSIDD, Interest Group on Aging; the 2009 Community Support Services Community Partner Award; the 2010 College of Applied Health Sciences, UIC Outstanding Researcher Award; and the AUCD 2012 International Award.
AMY HEWITT, PhD
"I am driven by social justice and the need to make our communities inclusive for everyone because we all belong here. The committed direct support professionals who make community living possible for many people with intellectual and developmental disabilities have extremely difficult jobs that demand high levels of skill, yet policymakers, systems, and society have not valued, rewarded, and respected them as professionals. I conduct research that provides ammunition for addressing the high turnover, high vacancy rates, and low wages for this essential workforce. As we struggle with the devastation of the COVID-19 pandemic, there has never been a greater need for this change, nor a better time to recognize the immense value of direct support professionals."
Amy Hewitt, PhD, has an extensive background in the field of intellectual and developmental disabilities. She has worked in various positions over the past 39 years to improve community inclusion and quality of life for children and adults with disabilities and their families. Her career began as a Direct Support Professional, and she currently employs DSPs to support her brother-in-law. She is the Director of the University of Minnesota’s Institute on Community Integration, and conducts research, evaluation and demonstration projects about community services for children, youth and adults with intellectual and developmental disabilities.
Dr. Hewitt has authored numerous journal articles, curriculum, technical reports, including a book entitled, Staff Recruitment, Retention and Training. She is on the editorial board of Inclusion and associate editor of Intellectual and Developmental Disabilities both journals of the AAIDD. She is a Past President of the Association of University Centers on Disability (AUCD) and Past President of the American Association on Intellectual and Developmental Disabilities (AAIDD).
JOAV MERRICK, MD, MedSci, DMSc
“My guidelines in my work with people with intellectual and developmental disabilities has always been the wise words of Hubert H. Humphrey: ‘The moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in shadows of life, the sick, the needy, and the handicapped.’ I have made that my own test also.”
Joav Merrick, MD, MMedSci, DMSc, born and educated in Denmark, is Professor of Pediatrics. affiliated with the Division of Pediatrics, Hadassah Hebrew University Medical Center, Mt Scopus Campus, Jerusalem, Israel; Kentucky Children’s Hospital, University of Kentucky, Lexington; and Professor of Public Health at the Center for Healthy Development, School of Public Health, Georgia State University, Atlanta; the former medical director of the Disability Administration, Ministry of Social Affairs and Social Services, Jerusalem; and the founder and director of the National Institute of Child Health and Human Development in Israel.
A book Dr. Merrick co-authored, Health Care for People with Intellectual and Developmental Disabilities across the Lifespan, is considered by many to be the “Bible” in the field of healthcare for people with IDD since 1989, when the first edition came out. He received the Peter Sabroe Child Award for outstanding work on behalf of Danish Children in 1985 and the International LEGO-Prize (“The Children’s Nobel Prize”) for an extraordinary contribution towards improvement in child welfare and well-being in 1987.
SUSAN L. PARISH, PhD, MSW
“Beginning in college, I worked as a direct care worker, and later administrator for nine years in residential and family support programs for people with intellectual disabilities. I started as a direct care worker. I am fundamentally driven by a feminist worldview, and believe every person should have robust quality of life, and the chance to achieve their potential, regardless of their disability, gender, or racial identity. My work has been shaped by this worldview, and the empirical evidence that Americans with disabilities and their family caregivers contend with an utterly inadequate and unfair social safety net. My research aims to improve the disability, health, and social welfare policies that make living in the US with disabilities expensive, unhealthy, and stigmatizing.”
Susan L. Parish, PhD, MSW is dean of the College of Health Professions, and professor of Health Administration at Virginia Commonwealth University. Prior to joining VCU in 2019, she served as Dean of Bouvé College of Health Sciences at Northeastern University. She was also the inaugural Nancy Lurie Marks Professor of Disability Policy, and directed the Lurie Institute for Disability Policy at Brandeis University. She began her academic career as an assistant professor of social work at UNC- Chapel Hill. Her research examines the health and financial well-being of women and children with disabilities and their caregiving families.
Dr. Parish has garnered more than $12 million in external research funding from a range of federal, state, and foundation sources. She has published more than 130 peer-reviewed journal articles, and is a fellow of the American Association on Intellectual and Developmental Disabilities, the Society for Social Work and Research. She received numerous teaching and mentoring awards as a faculty member at UNC and Brandeis. Her research has been recognized with national awards from the Arc of the United States, the American Public Health Association, the American Association on Intellectual and Developmental Disabilities. She is a member of the National Academy of Social Insurance.
Dr. Parish earned her BA in English Literature and MSW from Rutgers University. She earned her PhD in Public Health from the University of Illinois at Chicago, and completed and National Institutes of Health-funded postdoctoral fellowship at the Waisman Center, University of Wisconsin-Madison.
I. LESLIE RUBIN, MD
“Every day, each one of us conducts our lives with physical, emotional, and social abilities fulfilling our needs while participating and contributing to society. Every day, we are reminded of our own vulnerability and the vulnerability of others who do not have access to the same resources. Every day, we are reminded that we are all part of a larger society, and for all of us to enjoy the benefits and bounty of society, we must work together to ensure that all our fellow men, women and children have opportunities to live healthy and full lives. Transferring these thoughts into action is the essence of advocacy.”
I. Leslie Rubin MD is Associate Professor in the Department of Pediatrics at Morehouse School of Medicine; Adjunct Associate Professor in the Department of Pediatrics at the Emory University School of Medicine; Co-director of the Southeast Pediatric Environmental Health Unit at Emory University; President and Founder or Break the Cycle of Health Disparities, Inc.; and Medical Director of The Rubin Center for Autism and Developmental Pediatrics, in Atlanta, GA.
Dr. Rubin is originally from South Africa, where he trained in Pediatrics and arrived in the USA in 1976. He was initially at the Hospitals of the Case Western Reserve University in Cleveland Ohio. In 1980, he moved to The Children’s Hospital in Boston and the Harvard Medical School where he spent 14 years. In 1994, he moved to Atlanta, Georgia as Director of Developmental Pediatrics at Emory University and Medical Director of the Marcus Center. Since 1998 he has been involved with the Southeast Pediatric Environmental Health Specialty Unit (PEHSU) at Emory. In 2004, he joined the Department of Pediatrics at Morehouse School of Medicine. He has been involved in the healthcare of children and adults with intellectual and developmental disabilities since 1977. In 1989, he and Allen Crocker published the first textbook on medical care for children and adults with developmental disabilities and in 2006 they published the 2nd edition. Allen Crocker passed away in 2011, but with other partners Dr Rubin published the 3rd edition: Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan, Springer 2016.
He currently directs interdisciplinary clinical programs for children with autism, cerebral palsy, and other developmental disabilities at Hughes Spalding Children’s Hospital and at Developmental Pediatric Specialists in Sandy Springs, GA. He has a faculty appointment in the Department of Pediatrics at Morehouse School of Medicine, and teaches Medical Students and Pediatrics Residents, as well as Pediatric Residents from Emory University Department of Pediatrics. He also provides consultation and clinical services to the Hall County Children’s Medical Services on a regular basis, serving many families who are immigrants from Mexico. He is a pediatric consultant to the Emory Neuro-development Exposure Clinic, which evaluates children who had been exposed to alcohol, drugs and other substances in utero, and who have developmental and behavioral disorders, living in foster or adoptive homes.
He is the recipient of the Robert E. Cooke Lifetime Achievement Award from the AADMD in 2015; the Autism Achievement Award from the Annual Conference and Exposition of Georgia, in 2016; a Children’s Environmental Health Hero recognition, by Region 4 EPA; the Children’s Environmental Health Excellence Award from the Office of Children’s Health Protection, US EPA for Break the Cycle; and the AAP F. Edwards Rushton CATCH Award in 2018.
CATHY FICKER TERRILL, M.S
“We must support people to dream their biggest dream. The most important job for every professional in the field of disabilities is to support people to find and use their voice to advocate for their own individual dreams for the future.”
For the past 45 years, Cathy Ficker Terrill’s career has included working in leadership positions in government, non-profit organizations, university teaching, advocacy and supporting and mentoring self-advocates. She has worked internationally to define, measure and improve personal quality of life for people with disabilities. She is a Past President of the American Association on Intellectual and Developmental Disabilities (AAIDD). She is a past two-term White House Appointee to the President’s Committee for People with Intellectual Disabilities (PCPID).
Ms. Terrill has drafted and worked with self-advocates and families to pass state and national legislation in the US for early intervention, inclusive education, successful transition, competitive employment, family support, comprehensive healthcare for children, autism insurance coverage, housing, and disability rights. She wrote and implemented seven different Medicaid waiver plans for states. She has worked at the local, state and national stage for comprehensive organizational change toward fully inclusive supports and services for children and adults with disabilities. She has served on numerous boards, task forces and committees to create systems of services that have as their core, self-advocacy, self-determination and inclusion for all.
She has volunteered internationally, helping to create services for people with disabilities in many countries, including Russia and Lithuania. Under the direction of President George Bush, Sr., she joined a team of professionals who went to Saudi Arabia after Dessert Storm to conduct a comprehensive country-wide assessment of services and strategic plan for people with disabilities and people receiving aging services. She has been volunteering in Poland with family advocates wanting to set up programs and strategic plans for young Polish adults with IDD. She arranged for the families to also tour programs in the US.
Over the years, Ms. Terrill has helped to bring groups of self-advocates and professional to the U.S. to see community supports in action. She also volunteered in Kosovo, with Mental Disability Rights International to promote community-based services and institutional closures. She led a delegation of 40 self-advocates and professionals on a professional exchange in China on IDD and brain injury. She has done volunteer work in South Korea, Japan and Taiwan.
JAMES R. (JIM) THOMPSON, PhD
“Being an advocate means believing in and taking action to support a cause that is bigger than oneself. The cause that has captured my imagination for over 40 years has been to assure that people with disabilities have full access to all of the opportunities that community life has to offer. My advocacy is fueled by the knowledge that people with and without disabilities have much to gain when people with disabilities are supported to be full participants in all aspects of community life.”
James R. Thompson, Ph.D. has over 40 years of experience in the field of developmental disabilities, as a direct support professional, special educator, rehabilitation counselor, teacher educator, and researcher. He has authored or co-authored over 70 books, book chapters, monographs, and articles in professional journals, and has directed multiple federal and state-funded research and model demonstration projects. He pioneered assessment and planning practices that are focused on understanding people with disabilities by their needs for extra support. He is the lead author of the adult and children’s version of the Supports Intensity Scales, the first assessment tools to provide a standardized measure of the support needs of people with developmental disabilities. The SIS scales have been translated and published in 17 languages and are being used throughout North America and world. Dr. Thompson’s latest book, Planning for the Success of Students with IEPs: A Support-Based Approach to Inclusive Education, will be published in 2022 by W. W. Norton & Company.
Dr. Thompson earned his undergraduate degree in special education (1980) and a master’s degree in educational administration (1989) from Illinois State University. He earned a doctoral degree in educational psychology (1994) from the University of Minnesota. He currently serves at the University of Kansas as a Professor in the Department of Special Education, a Senior Scientist in the Beach Center on Disability, and an Associate Director of the Kansas University Center on Developmental Disabilities. He also maintains a courtesy appointment as a Visiting Professor at the University College Ghent (Belgium), and serves as a consultant with the Het EQUALITY Research Collective (the EQUAL Center), a center that is devoted to the study of Quality of Life and disability populations.
He is a past President of the American Association on Intellectual and Developmental Disabilities (AAIDD) and is currently on the Board of Directors for the Council for Exceptional Children’s Autism and Developmental Disabilities Division as well as The Arc of Douglas County (KS). He is the Editor in Chief of Intellectual and Developmental Disabilities, a professional journal of research, policy, and practice published by the AAIDD.
ELIZABETH (LIZ) WEINTRAUB
“When people refer to us as ’special needs,’ that bothers me, because we are also citizens of this country with needs just like anyone else. I love being an advocate for people with disabilities and helping them ‘grow’ just like people have taught me how to grow.”
Elizabeth (Liz) Weintraub has a long history of leadership in self-advocacy, and has held many board and advisory positions at state and national organizations. She is a full-time member and Senior Advocacy Specialist of the AUCD's policy team, and also the host of “Tuesdays With Liz: Disability Policy For All,” where she works to make polices in accessible language, so policy is accessible to all.
In the Spring of 2018, Ms. Weintraub served as a Fellow for Senator Bob Casey of Pennsylvania, working in his DC Office where she helped lead the way on disability policy by helping the Senator hold the administration accountable for disability stakeholder input into key programs; calling attention to the need for accessible supports and services for students and employees with disabilities on college campuses who have been sexually assaulted. She helped organize a first-of-its-kind Pennsylvania Disability Employment Summit with over 250 participants. Said Senator Casey: "Liz has shown the Senate how important it is to have staff members who have developmental and intellectual disabilities. She's helped reshape the culture of the Senate."
In the fall of 2018, Ms. Weintraub told the story of her personal experience as a woman with disabilities, as she testified before the Senate Judiciary Committee about the potential implications of a Kavanaugh confirmation to the civil rights of people with disabilities.
Prior to coming to AUCD, Ms. Weintraub worked for the Council on Quality & Leadership (CQL). She completed the LEND training program at the Center for Leadership in Disability at Georgia State University. She was past Chair of the Maryland Developmental Disabilities Council. She is rejoining the Council for another term. Ms. Weintraub has received numerous awards, recognition, and commendations for her work. She enjoys mentoring people with disabilities.
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