Sujata Bardhan, Ph.D
Dr. Sujata Bardhan is a Scientific Program Manager in the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), at the National Institutes of Health (NIH). Prior to joining NICHD in April 2013, she worked in industry and as an Adjunct Assistant Professor in the Department of Chemistry at the College of Staten Island. She has been involved in the development of “DS-Connect®: The Down Syndrome Registry,” and currently serves as the registry coordinator. The Registry is an online, confidential database with demographic and health information from individuals with Down syndrome designed to provide resources to the Down syndrome community and connect them with research opportunities.
Elizabeth Bodien lives near Hawk Mountain, Pennsylvania. She is a sister and a guardian for her brother Pete who has Down Syndrome. Pete lives at Bancroft’s Flicker Residences in New Jersey. She is a member of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) of the American Academy of Developmental Medicine and Dentistry (AADMD) and a member of the Online Support Group for Family Caregivers / Family Advocacy.
Mary Borman is freshman at the University of Arkansas in the EMPOWER Program, majoring in Communications. She has been a National Down Syndrome Society Ambassador in Arkansas for five years an a NDSS Athlete Ambassador. In addition, Mary has been chosen to represent Arkansas in swimming for the USA Special Olympic Games in Seattle in July. Mary is very active in her community and is looking forward to telling people about her experiences.
Jane Boyle is Ellen Boyle’s sister. Ellen was born with Down Syndrome in 1965. Jane was Ellen’s legal guardian, primary carer, and side kick until Ellen’s death at age 52 from Alzheimer’s Disease. Jane and Ellen lived together in Sea Girt, NJ where Ellen thrived as a cherished member of the community — living, learning, working, volunteering, competing, socializing, contributing, and loving life — for more than 40 years.
Jane is a member of the National Task Group family support group and a certified Dementia Capable Caregiver and Trainer. She is active in GWEP and S-COPE, a New Jersey statewide initiative addressing I/DD, aging and dementia. She continues a 40+ year career in fundraising and development and is a graduate of Manhattanville College.
Stanley “Bud” Buckhout
Stanley “Bud” Buckhout is the Director of the InclusiveU program and Associate Director of the Taishoff Center. He has worked in education for over 20 years. He earned his Teaching Certificate, M.S. in Special Education and a C.A.S. from Le Moyne College. He has worked in exploring research and facilitation of groups to aid in the identification of student instructional needs at the collegiate, district and school level. He has implemented trainings at many educational levels to develop effective learning environments for students.
Embry Burrus is a licensed speech-language pathologist and was a clinical faculty member in the Department of Communication Disorders at Auburn University for 14 years. She currently works part-time as a clinical supervisor at Auburn and is a full-time caregiver for her older sister, Margaret, who has Down syndrome.
Embry has traveled the U.S. speaking to Down syndrome support groups, and presenting at conferences, and is a member of the Adult Sibling Task Force for the National Down Syndrome Congress. She is the author of a memoir about her family, The Life We Choose: A Sibling’s Story (Solomon & George Publishers, 2017) and is the co-author of a textbook, Professional Communication in Speech-Language Pathology: How to Write, Talk and Act like a Clinician, Third Edition (Plural Publishing, 2016).
She lives in Opelika, Alabama.
Dave Burton was been an entrepreneur since he was a child. He started his first candy company at age 14, making and selling lollipops to his friends in junior high. He started his retail career as a management intern for Wal-Mart while in college. After graduating from Brigham Young University with a business degree in international marketing and retailing, he worked for ZCMI department stores (now part of Macy’s) where he managed their e-commerce site and their customer database, and introduced customer tiers to their in house credit card program.
Dave has an entrepreneurial spirit and has also launched several business startups including a WebTV sales company and a greeting card company. In 2014 Dave embarked on his newest entrepreneurial adventure, launching The Capital Candy Jar. His company specializes in making gourmet confections including marshmallows, lollipops and chocolates and selling them through various festivals, stores and hotels in the Washington DC area.
At the CFPB, Ms. Calderon expands financial capability services to low-income and economically vulnerable consumers who often face complex challenges in the marketplace as they strive to gain access to safe and affordable financial products and services. Additionally, she builds and maintains federal, state, and local partnerships to reach underserved consumers in special populations, including: youth and adults with disabilities, justice-involved individuals, immigrants and refugees, and consumers in rural communities. Prior to the CFPB, She served as Director of Financial Empowerment at the Economic and Workforce Development Department in the City of Los Angeles, Legislative Director at the New America Foundation in California, Director of Asset-Building at the New America Foundation in California, Legislative Staff in the California State Legislature, and Associate Consultant at the Transportation Committee of the State Assembly in the California State Legislature. Ms. Calderon is a Phi Beta Kappa graduate of UCLA, studied Arabic at the American University in Cairo as National Security Education Program scholar, and was awarded the prestigious American Memorial Fellowship by the German Marshal Fund of the United States.
Joe Caldwell, Ph.D.
Joe Caldwell is Director of Long-Term Services and Supports Policy at the National Council on Aging. He has over 20 years of experience in the fields of aging and disability as a researcher, policy expert, and parent of a young adult with Down syndrome. At NCOA, he leads the Disability and Aging Collaborative, a coalition of over 40 national aging and disability organizations that work together to advance long-term services and supports policy. Joe is also an Adjunct Research Professor at the University of Illinois at Chicago (UIC), where he earned his doctorate in Disability Studies. His research has primarily focused on self-directed supports, family support, aging caregivers, and the self-advocacy movement. He currently is co-PI of the Family Support Research and Training Center at UIC and collaborates with other federally funded research centers on community living policy. He serves on the boards of the National Alliance for Caregiving and the Consortium for Citizens with Disabilities.
Dr. Capone attended college at Wesleyan University and worked as a research assistant at the Dana Farber Cancer Institute in Boston before obtaining his medical degree from the University of Connecticut in 1983. After a residency and fellowship in pediatrics at the Children’s Hospital Medical Center in Cincinnati, Dr Capone came to Baltimore in 1988 to pursue a fellowship in neurobiology research at Johns Hopkins. Dr. Capone currently serves as the director of Kennedy Krieger Institute’s Down Syndrome Clinic and Research Center (DSCRC) and is an attending physician on the institute’s comprehensive rehabilitation unit.
Dr. Capone will speak during the breakout session entitled: Common Medical Conditions in Adults with Down syndrome during our inaugural 2018 NDSS Adult Summit on Monday April 9, 2018 from 10:45am – 11:45am in Arlington, Virginia. This session will address the medical conditions that should be watched out for, addressed and treated through the life span of adults with Down syndrome.
Phillip Clark is the proud older brother of a sister, Sarah, who has Down syndrome. He feels incredibly blessed to have Sarah in his life, as she has impacted him in incredible ways.
When Sarah was born 29 years ago, Clark’s parents did not receive “Congratulations” from their doctors. Instead, they heard, “I’m sorry, your daughter has Down syndrome” followed by a list of abilities that his sister would NOT develop. Despite the doctors’ limited expectations, Clark’s parents believed Sarah could live a great life so they encouraged her in every way. Today, Sarah works in a second-grade classroom where one of her job duties is tutoring students in reading—an ability the doctors thought she would never develop herself!
Clark founded ENABLE Special Needs Planning, LLC, to help other families with children with special needs overcome negative and limited expectations for their children’s abilities and potential through comprehensive special needs planning.
Clark is the co-creator of the ENABLE Special Needs Planning SystemTM, a first-of-its-kind interactive, online planning platform that allows families to comprehensively plan for their child’s GREAT life—a life of purpose and impact—from the ease and comfort of their own homes. The System includes Vision, Life, Resource, Financial, and Legal Planning tools.
Clark believes that EVERYONE has the ability to #BeImpactful.
Mary is a graduate of Leadership APTA, the out-going President of the Charlotte Metro chapter of WTS, a member of the Transportation Research Board, Women Executives and the Charlotte Chamber’s Board of Advisors and the Economic Development Committee. In 2005, she received the Governor’s Award for outstanding service for her work in public transportation in North Carolina.
In October of 2016, Mary sponsored the formation of a group of women in Charlotte called the “Women of Power, Passion and Promise”, that meets every 60 days to discuss matters of importance to women in the Charlotte region. The Mayor Pro Tem of Charlotte is a member, as is former Judge Shirley Fulton, and Chair of Charlotte’s Planning Commission, Deb Ryan.
Patty offers educational programs, facilitation and professional development services related to creative planning, strategic visioning and individual and family-directed service designs. Her work has been dedicated to advancing the standards of excellence in person-centered planning in support of the development of highly personalized support arrangements that are based on the unique interests and needs of individuals and families. Patty has extensive background in process facilitation and natural support strategies, has authored several publications on person-centered planning, and provides training at both the state and national levels.
Paul R. Dolan recently retired after 35 years as an executive at ABC News and prior to that served as Executive Director of the One to One Foundation which was set up to provide community housing in New York, New Jersey and Connecticut as an alternative to state institutions. One to One also funded the Willowbrook landmark litigation to protect the human rights of people with disabilities. He is a trustee of the Robert Sterling Clark Foundation and with his wife JoAnn is parent of three sons, Peter, Thomas and Jamie. Jamie works as an Information and Referral Assistant at NDSS.
Paul Eder, PhD is a Lead Consultant with The Center for Organizational Excellence, Inc. He has over fifteen years of experience as a strategy and management consultant focusing on optimization of organizational structures and work environments. Paul is certified as both a Project Management Professional and a Lean Six Sigma Black Belt. He has presented at top-tier conferences and published peer-reviewed articles and papers on strategic planning, employee performance, and creativity. He is the co-author of FIRESTARTERS: How Innovators, Instigators, and Initiators Can Inspire You to Ignite Your Own Life.
David is currently a Community Relations Specialist at SourceAmerica in Government Affairs and an NDSS ambassador. He is a trail blazer with 20 years of competitive employment. He testified about employment to the Senate Health Education, Labor and Pensions (HELP) Committee. He served as a J.P. Kennedy Jr. Public Policy Fellow, first person with intellectual disability to be selected in this position for one year working with the Ways and Means Social Security Subcommittee on Capitol Hill and then with the National Down Syndrome Society where he led the effort on #DSWORKS campaign and resource guide for employers. Over the years, he has been active on several Disability Boards and in leadership roles. He currently serves as a Board Member on the Down Syndrome Association of Northern Virginia (DSANV), and the Arc of Northern Virginia. He is also a Special Olympics Sargent Shriver International Global Messenger.
Ms. Fialkowski directs the Institute on Disabilities’ university-based education programs, including the Interdisciplinary Faculty Council on Disability, the Disability and Change Symposium, and the Disability Studies Certificate program. Ms. Fialkowski was a Joseph P. Kennedy Jr. Public Policy Fellow at the Administration on Intellectual and Developmental Disabilities, and the Executive Director of The Arc Maryland. As an American Association of University Women (AAUW) Career Development Grantee, Ms. Fialkowski received an MTS (Biotechnology and Ethics) at Catholic University. She also holds a BA in Technical Communication from Bowling Green State University. The Fialkowski family were involved in several landmark disability-related cases including PARC v. The Commonwealth of Pennsylvania. Kate Fialkowski has worked on numerous national disability policy task groups including: “Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities” (2011) and “Enabling Adults with ID Affected by Dementia to Remain in Their Community and Receive Supports” (2012). National conference presentations include: “Including People with Disabilities in the Discussion of Domestic Abuse and Violence” (2016), “Closing the Doors” (2012), and “Disability and Self Representation” (2017). Ms. Fialkowski and her brother David Fialkowski are active sibling advocates.
Sandra L. Fournier, MSN, RN, CDDN, CBIS is the LTSS Oversight Manager at Neighborhood Health Plan of RI and was most recently appointed to the Neighborhood Diversity Council. She is also the also Project Director at Seven Hills RI for the oversight and implementation of an ACL grant designed to improve care of adults with IDD and ADRD. She has over 20 years’ experience in the DD field and has managed large federal grants highlighting interdisciplinary approaches and caregiver support. Her commitment to professional nursing includes her experience as the former chairperson of the RIDDNA; she is a former board member of the ANA-RI and Co-Lead of the RI Action Coalition for the Future of Nursing. Sandra was appointment by the Lt. Governor of RI to serve on the Executive Board for the Alzheimer’s State Plan and is an American Heart Association instructor for CPR and First Aid. Her volunteer commitment includes the Human Rights Committee of Halcyon Center; and local Citizens Emergency Response Team. She is certified in Developmental Disability nursing and as a brain injury specialist. Sandra has a Masters in Nursing with a specialization in Nursing Administration and Management. She is a member of Sigma Theta Tau and Delta Epsilon Tau.
Cameron is a Vice President in the Financial Advisory Services group at AlixPartners in New York. Cameron has four years of experience providing forensic accounting and compliance expertise to help organizations solve their most critical issues and navigate complex compliance environments. Cameron’s consulting expertise includes anti-bribery and anti-corruption compliance assessments, accounting and fraud investigations, and related remediation strategies. Originally from Houston, Texas, Cameron is a Certified Public Accountant, a Certified Fraud Examiner, and holds a BS in Accounting and an MS in Accounting and Information Systems Analysis from Lehigh University. Cameron has been working with NDSS for a year.
Laura Hathaway, is an entrepreneur, differently-abled toy advocate, and founder of Warner’s Corner Toys. Laura proudly serves as the Down Syndrome Guild of Southeast Michigan’s Employment Development Director. She believes in the unlimited and largely untapped potential of each person with Down syndrome. She demonstrates the benefits of employing individuals with Down syndrome to local businesses and helps them develop competitive and volunteer work opportunities. Laura also networks with multiple Down syndrome support organizations in southeast Michigan to recruit future tax payers with DS for jobs in which they will be happy and fulfilled. Her mission is to give all differently-able kids “wings and a compass” so that they become everything that they are meant to be.
E. Adel Herge, OTD, OTR/L, FAOTA is an occupational therapist who specializes in providing services to individuals with intellectual disabilities in family homes, residential and day programs. Dr. Herge is Associate Professor and Director of the BSMS OT Program at Thomas Jefferson University in Philadelphia. She is also an interventionist for Jefferson Elder Care, a dementia service that uses evidence based interventions to improve the daily lives of persons with dementia and their caregivers. Dr. Herge has a special interest and expertise in supporting caregivers in developing their skills in helping persons with ID and dementia lead full meaningful lives. She has co-developed and implemented a variety of innovative training programs with caregivers and is currently modifying an evidence based program for family caregivers for use with staff in group homes. She is a member of the National Task Group (NTG) on Intellectual Disabilities and Dementia Practices Steering Committee and the Evaluation Committee as well as co-author of the NTG Education and Training Curriculum on Dementia and I/DD.
Mary’s personal and professional lives were shaped by the arrival of her youngest brother Bill who was born with Down syndrome in 1960. Since Bill’s death in 2010 of complications related to Alzheimer’s disease, Mary has worked closely with the National Task Group on Intellectual Disabilities and Dementia Practices (NTG) to raise awareness of the challenges faced by individuals with Down syndrome diagnosed with Alzheimer’s disease, their families and other care providers. She remains dedicated to improving quality of life and quality of care for this very special group of people.
Misty is an active advocate, career woman, wife, and mother of two daughters: Avangeline Grace, age 9 & typically developing, and Alison Faith, age 7, chromosomally enhanced, and the heart of the family. Misty has a passion for mentoring women & youth and motivational speaking. She holds a Bachelor of Science of Electrical Engineering and a Master of Science Systems Engineering from Southern Methodist University and is employed in the Aerospace & Defense Industry
Misty’s newest focus is the unemployment epidemic that people with intellectual disabilities often face. She’s involved with #DSWORKS™, an employment initiative whose goal is to encourage corporations and businesses to invest in hiring people with Down syndrome and to increase the number of opportunities for individuals with Down syndrome to work in meaningful and competitive employment settings.
Misty co-founded the ABLE & ALLIES People with Abilities Employee Resource Group at her company. The ABLE and ALLIES mission is to unite the community in order to promote awareness, education, and support while recognizing the abilities, competencies, & contributions of those with disabilities and strive to create a fully inclusive workplace
Jerry retired as General Agent of The Washington Group of MassMutual in 2004. The same year he formed The
Washington Group Special Care Planning Team, a group of financial planners who specialize in planning for
families with individuals with special needs. Additionally, in 2014, he started Caring Consulting Group (CCG).
CCG offers consulting in education and technical advisory on special needs planning for Non-Profit
Organizations, Businesses, Corporations and Educational Institutions with the mission of understanding and
enhancing the quality of life issues of caregivers and individuals with disabilities. Jerry is also an expert witness
on financial and insurance matters for families with special needs situations.
A pioneer and advocate for the special needs community, Jerry has spoken across the country at various
conferences, forums, and panels dealing with issues and planning for the special needs community (World
Congress on Disabilities, Academy of Special Needs Planners Conference, National Down Syndrome Congress,
etc.). He has been a guest on numerous radio talk programs (Hugh Hewitt Show, Sirius XM’s Dr Radio Show,
Jerry has been active in the financial services industry for over 40 years. Jerry was one of the first people in the
country to receive the Chartered Special Needs Consultant (ChSNC) designation from The American College
(the premier designation for financial professionals working in special needs planning). Jerry earned his
Chartered Life Underwriter (CLU), and Chartered Financial Consultant (ChFC) designations also from The
American College. Jerry is also certified in Long Term Care (CLTC). He holds a Life/Health Insurance license
and Series 6, 7, 63, 22, 24 & 65. Jerry graduated from Virginia Tech in Blacksburg, Virginia.
He joined Connecticut Mutual Insurance Company as an Agent in 1973. He was appointed General Agent in
1986. In March 1996, Connecticut Mutual merged into the MassMutual Life Insurance Company. He continued
as General Agent in Washington following the merge of Connecticut Mutual with MassMutual. His agency was
one of the largest and earned the highest honors for leading in production and brokerage development from
Jerry is a member of the Virginia Tech Foundation Board, Virginia Tech National Campaign Chairman for the
College of Liberal Arts and Human Sciences, and Dean’s Roundtable Executive Committee for the College of
Science. He is a life member of Alpha Phi Omega Service Fraternity, charter member and Past President of the
Fair Oaks Rotary Club, and was an Elder with Faith Presbyterian Church of Alexandria, Virginia. In 2014 Jerry
was awarded the Eleanor Sue Finkelstein Award for Special Needs from the Jewish Community Center of
Northern Virginia for his work in special needs. Jerry is also very active with many local special needs nonprofits
such as ArtStream and The Jewish Community Center of Northern Virginia’s Special Needs Department.
Jerry’s activism in the Special Needs community is also inspired by several Special Needs individuals in his own
Doug Jackson has been dedicated to the field of developmental disabilities for 20 years and works with a passion to serve people with disabilities and their families through improving the support system and the support staff. Doug’s experience includes managing the services of a direct support agency, executive administration in Ohio’s County Board of DD system, teaching human services classes at Wright State University, and guiding a state-operated developmental center as the Superintendent. Doug joined the Office of the Ohio Treasurer of State to help administer Ohio’s STABLE Accounts, a financial plan for people with disabilities.
Dr. Janicki is Research Associate Professor at DHD, UIC. Formerly, he was Director for Aging and Special Populations for the New York State Office of Persons with Intellectual and Developmental Disabilities and is the author of numerous journal articles and textbooks on I/DD. Dr. Janicki originated and chaired the IASSIDD special interest group on aging for a number of years, was a member of Executive Committee for IASSIDD, and was the founding editor of the IASSIDD’s Journal on Policy and Practice in Intellectual Disabilities. He was instrumental in organizing an international research and policy meeting on intellectual disability and aging that was held at the World Health Organization in Geneva, Switzerland. Currently he is the co-chair of the National Task Group on Intellectual Disability and Dementia Practices (the “NTG”), and manages a longitudinal study of dementia capable group homes for adults with intellectual disability.
Kate Johnson is the Associate Director of Grassroots Advocacy at Autism Speaks. Kate has always been passionate about advocating for the disability community, as she has a family member on the autism spectrum. She graduated from the University of Mary Washington in Fredericksburg, Virginia, where she studied psychology and political science. She later worked in professional childcare and in a congressional leadership office prior to joining the Autism Speaks team in 2013. She’s served with the state and federal policy teams and now leads the grassroots team. In her spare time, she loves to travel and coaches high school volleyball.
Kenya Jones known to most as Nyla, grew up in a artist family. A professional dancer now Program coordinator for Jubilee’s Phase 2 supporting special need adults over the age of 45. Nyla holds a degree in wellness with a focus in yoga therapy and holistic nutrition. Her passion is in positive aging and educating those to live their optimal life.
Seth M. Keller, MD, a board certified neurologist in private practice with Advocare Neurology of South Jersey. specializes in the evaluation and care of adults with Intellectual and Developmental Disabilities (I/DD) with neurologic complications. He cares for individuals with I/DD both in the community as well in New Jersey’s ICF/DD centers. Dr Keller is on the Executive Board of the Arc of Burlington County as well as on the board for The Arc of New Jersey Mainstreaming Medical Care oard.
Dr Keller is the Past President of the American Academy of Developmental Medicine and Dentistry (AADMD) and is the co-chair of the National Task Group on Intellectual Disabilities and Dementia Practices (NTG). Dr Keller is also the director of the Adults with I/DD Special Interest Group in the American Academy of Neurology (AAN). He is actively involved in national and international I/DD health education as a speaker and webinar and workshop participant.
Raised in Philadelphia, PA, Keller received his bachelor’s degree from Temple University, earned his medical degree from The George Washington University School of Medicine in 1989, and completed his neurology internship and residency at Bethesda Naval Hospital. He also served as a Navy neurologist at the U.S. Naval Hospital in Okinawa, Japan.
Bobby Lanyon is the President of the Board of Directors for the Eastern Pennsylvania Down syndrome Center (EPDSC), based in the Lehigh Valley, PA.
The EPDSC is in the process of developing the first fully inclusive creative living environment for adults with intellectual disabilities. A fully, self-contained environment that will be the catalyst in the community for people with intellectual disabilities and without disabilities to live in apartment style living with assistance based on needs. The program is designed to be financially self-sustaining and to work along with waiver provisions.
Bobby Lanyon is married to wife, Michelle and has 3 sons, their middle son Jackson was born with Down syndrome.
Bobby Lanyon is the CEO of Access Innovations Global, a mining support company and also the author of “Extraordinary Love – faith based parenting for special needs kids”.
Maja has worked on disability advocacy – in both academia and for non-profits – in North America and Southeast Europe, where she has contributed to research and literature on the rights of persons with disabilities and their families. While working at the UNICEF Office in Bosnia, Ms. Pašović helped develop a national situation analysis on health care needs, systems for social protection, and inclusive education for children with physical and developmental disabilities. In addition, she was a member of a research team at the University of Waterloo, Canada, that examined the impact of Canadian immigration policies on persons with disabilities, with the research findings presented in the book Disabled Upon Arrival: Eugenics, Immigration, and the Construction of Race and Disability (Ohio State University Press, 2018). She has presented at numerous conferences around the world and is a published author with Palgrave Macmillan, UK. Part of her work at the National Alliance for Caregiving is focused on connecting the Alliance with groups and coalitions focused on disability advocacy, with the goal of addressing the needs of family caregivers of persons with disabilities and their care recipients.
Harold “Hackie” Reitman, M.D.
Harold “Hackie” Reitman, M.D. is the founder and president of the 501(C)3 nonprofit Different Brains Inc., the only place where intellectual and developmental differences (like autism, dyslexia, ADHD, and down syndrome), mental health challenges (such as bipolar or anxiety) and neurological issues (such as Alzheimer’s, Parkinson’s, strokes, and Traumatic Brain Injuries) all converge under one positive roof: DifferentBrains.org. The organization’s neurodiverse team produces videos, blogs, podcasts and more – all accessible free of charge – to support those of us with different brains, from autism to Alzheimer’s and all brains in between!
Dr. Reitman is a retired orthopedic surgeon, a former professional heavyweight boxer (who donated every purse from his 26 professional matches to children’s charities), an independent filmmaker, and the past chairman and present board member of the Boys and Girls Clubs of Broward County. He is also the author of the book “Aspertools: A Practical Guide for Understanding and Embracing Asperger’s, Autism Spectrum Disorders and Neurodiversity” (released by HCI Books, publishers of the “Chicken Soup for the Soul” series), and the writer and producer of the full-length independent film, “The Square Root of 2” starring Darby Stanchfield of ABC’s hit show “Scandal.” The movie was inspired by the experiences of his own daughter Rebecca, and her perseverance over adversity. In 2016 Hackie was given the award for Significant Contributions in Development from AASCEND (Autism Asperger Spectrum Coalition for Education Networking and Development).
Separate from Different Brains, Hackie is the founder and CEO of PCE Media, a media production company focusing on reality based content. He recently co-executive produced the documentary “Foreman”, the definitive feature documentary on legendary boxer and pitchman George Foreman.
Erin Riehle, MSN, RN is a national leader in promoting employment opportunities for people with disabilities and other barriers to employment. She is a founder and Director of Project SEARCH, anemployment and transition program that has received national recognition for innovative practices.
Erin Riehle began her career at Cincinnati Children’s Hospital Medical Center as a staff nurse in the pediatric intensive care unit and advanced to clinical director of the emergency department. Her interest in employment for people with disabilities grew from her frustration with high turnover rates among workers performing critical tasks such as re-stocking emergency room supply shelves. Riehle found that placing individuals with developmental disabilities in these positions was both an effective solution to her staffing problems and an improvement in quality of life for the workers she employed. This positive experience ultimately led to a systematic, hospital-wide effort, led by Ms. Riehle, to explore job possibilities for people with disabilities.
Douglas Rogers is a self-advocate, a multi-sport Special Olympian, and a transportation aide and companion at his local Senior Citizens Center. In his spare time he is an avid skier, swimmer, kayaker, Zumba-dancer, and hiker. He loves to travel the world and try to learn new languages. He is an accomplished cook of international cuisine.
Mr. Romano was designated as Chairman of the National Council on Disability by the White House on February 26. In 2015, Romano was appointed by Senate Majority Leader Mitch McConnell as a congressional appointee to the Council. As Chairman to the Council, Mr. Romano advises the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
Neil Romano has dedicated his career to the marketing of ideas and messages to help save lives and promote public policy. Romano’s extensive professional background includes tenure as director of communications for the White House Office of Drug Abuse Policy. In that role, he worked on notable public awareness campaigns including “Just Say No” and “America Responds to AIDS.” In 2007, Romano was nominated by President George W. Bush to be the Assistant Secretary of Labor for Disability Employment Policy and was unanimously confirmed by the U.S. Senate. As head of the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP), Romano advised the Secretary of Labor and worked with all DOL agencies to lead a comprehensive and coordinated national policy regarding the employment of people with disabilities in the United States. His work as a member of the Committee for Purchase from People Who are Blind or Severely Disabled, helped improve the quality of life for workers with disabilities. In 2010, Romano’s work as a member of that committee was recognized by the full committee with a special leadership award. As a producer/director, Romano’s film, “Youth Homicide: A Public Health Crisis,” earned a Best Director Emmy Nomination.
Brian was born and raised in Eastern Washington and after graduating from High School joined the Navy. He graduated from the Naval Academy and enjoyed a 22 year career as a carrier pilot. After retiring from the Navy he completed a theology degree and worked for a large church in Southern California. While visiting his family he met his future wife Cathy McMorris. Brian currently supports the family as a stay-at-home-dad to their three children, Cole, Grace, & Brynn. Cole, their oldest now eleven years old, was born with trisomy twenty-one. They split their time between Eastern Washington and Washington D.C.
Margaret Rogers, Ph.D., sister, is a full professor in the Psychology Department at the University of Rhode Island. She loves to travel the world with her brother and is thrilled that he’s become such a wonderful cook of recipes from across the world.
Eric Ochmanek joined the Ohio Treasurer’s Office in January 2015. As Deputy Chief of Staff, Eric manages numerous departments including Communications, Legislative & Policy Affairs, and Public Affairs. He also leads outreach efforts for STABLE Account, which continues to empower individuals with disabilities as the largest ABLE Program in the country. Eric was born and raised in Dearborn Heights, Michigan, and now resides with his wife, Claire, and three young sons in Ohio.
Sam has worked with the Taishoff Center at Syracuse University since 2014, holding multiple positions. Currently, Sam is the Student Support Coordinator, advising InclusiveU students on courses, campus life, and independent living. Sam graduated in 2013 from SUNY Fredonia with a dual degree in History and Social Studies Adolescent Education. Prior to his roles with the Taishoff Center, he worked as a campus mentor, supporting individual InclusiveU students as they navigated college life.
Consuelo Senior, LMSW
Consuelo Senior has 20+ years experience working in the field of intellectual and developmental disabilities and mental health. Ms. Senior brings a myriad of experience from a variety of areas within the field; teacher, staff trainer, Curriculum Developer, Medicaid Service Coordinator, administrator, direct support professional (residential, day program, employment), psychotherapist and consultant.
Ms. Senior’s love for the field began with her beloved uncle who had Down syndrome. Ms. Senior currently is an expert staff trainer and develops curriculum for a wide range of populations within the disability field (Autism, Complex Needs, Aging, Multiple Disabilities, Dementia/Alzheimer, Social-Sexual Issues, Vocational, Dual Diagnosis-Mental Illness and Intellectual and Developmental Disabilities and Profound Disabilities). She currently works at YAI & at the Center for Specialty Therapy Clinic
Ms. Senior has been providing sex education for people with disabilities, families and support staff for 16 years. She has been practicing (group and individual) psychotherapy for 11 years. Ms. Senior is also an Adjunct Lecturer at City College of New York
(CCNY) and Adelphi University. Ms. Senior has presented at numerous conferences, symposiums, radio programs and panel discussions as an expert mental health clinician. Ms. Senior is an agency representative to the U.N’s Economic and Social Council and is published in The Autism News.
Kathy Service, RN, MS, FNP-BC, CDDN has worked in the field of intellectual and developmental disabilities (I/DD) since 1976 (as RN) and later from 1979 (as nurse practitioner), both in institutional and community settings with the Massachusetts Department of Developmental Services until retirement in 2/2016. In 1995, she was the co-developer and coordinator of a series of presentations on dementia and people with ID in Western Massachusetts. Kathy has served on advisory boards nationally and internationally, presented at domestic and foreign conferences, and written articles, book chapters and educational modules on topics of aging, dementia, loss and grief and nursing support of people with I/DD. She has served on the Steering Committee of the National Task Group on Dementia and Intellectual Disabilities since its inception and participated in the NTG’s curriculum development and was a member of the working group of the development of the Edinburgh Principles in 2/2001. She contributed to the NDSS publications: Alzheimer’s Disease & Down Syndrome: A Practical Guidebook for Caregivers and Aging and Down Syndrome: A Health and Well-Being Guidebook.
Rob Snow is a nationally recognized motivational speaker who has performed throughout the country and internationally. His show, Minimize The Mountain, combines his background in stand-up comedy with several personal experiences to provide an entertaining, humorous, and inspiring story for all audiences. Through this show, you will learn how to manage through life’s biggest “mountains”, and perhaps come out even stronger on the other side. Rob is also the founder of Stand Up For Downs, a non-profit dedicated to enhancing the lives of those with Down syndrome through humor.
Joe Shapiro is a correspondent on the NPR Investigations Unit. He takes on long-term reporting projects and covers breaking news stories for NPR’s news shows.
In 2018, NPR ran his investigation, “Abused and Betrayed,” about the epidemic of sexual assault of people with intellectual disabilities.
Shapiro joined NPR in 2001 and spent eight years covering health, aging, disability and children’s and family issues on the Science Desk. He is the author of the award-winning book, NO PITY: People with Disabilities Forging a New Civil Rights Movement, which is widely read in college disability studies classes and considered the classic examination of the disability movement.
Before joining NPR, Shapiro spent 19 years at U.S. News & World Report, writing on social policy and serving as the magazine’s Rome bureau chief, White House correspondent and congressional reporter.
Shapiro is a graduate of Carleton College and the Columbia University Graduate School of Journalism.
Jennifer Sladen is the Director for National Initiatives at The Arc of the United States. In this role, Jennifer is a program director The Arc’s individual and family support initiatives, including the Center for Future Planning®, and leads The Arc’s MLK Day of Service volunteer initiative. Since joining The Arc in 2011, she has contributed to several projects relating to autism, employment, health, and family support research and training.
Kathleen M. Srsic-Stoehr, MSN, MS, RN, NEA-BC
Kathleen Srsic-Stoehr has been a family and caregiver advocate member of the National Task Group on Intellectual Disabilities and Dementia Practices since 2011. Kathleen’s advocacy activities began as a result of her own experiences in caregiving for her brother, Carl, who was born with Down’s syndrome and died at the age of 50 years from complications of Alzheimer’s disease. She has provided support and guidance to other family caregivers and given presentations at various organization conferences and community gatherings in the Washington, DC National Capital Area. She was a contributor author to two National Down Syndrome Society publications: Aging and Down Syndrome: A Health and Well-Being Guidebook and Alzheimer’s Disease and Down Syndrome: A Practical Guidebook for Caregivers. Kathleen’s professional nursing career spans over 40 years in clinical, administration, research, and education positions with a particular focus on quality and patient safety.
Michael Toobin, P.C.
MICHAEL D. TOOBIN has been in the private practice of law in Northern Virginia since 1974. He graduated from The American University in Washington, D. C. in 1971 and received his law degree from the University of Connecticut in 1974. His practice is general in nature, with emphasis on estate planning, special needs estate planning, administration of estates, and real estate law. He is a member of the Academy of Special Needs Planners, the board of directors of the disability Law Center of Virginia (formerly the Virginia Office for Protection and Advocacy), and a member of the Fairfax County Long Term Care Coordinating Council. He is a former member of the board of directors of the Arc of Northern Virginia, and a former adjunct professor of The American University. He is an extensive lecturer on estate planning matters, and has presented at many different venues including the Accessibility Summit, the Arc of Virginia annual convention, the Circle of Support conference, FutureQuest, and the Williams Syndrome annual meeting. He is a contributing author of the books, Virginia Elder Care Planning: How to Protect Assets and Provide for Services (National Business Institute, 2005), The Probate Process From Start to Finish (National Business Institute, 2006), and Estate Planning Basics (National Business Institute, 2007). Michael and his wife, Merle, live in Burke, Virginia.
Jessica Tuman leads Voya’s Center of Excellence for Special Needs and People with Disabilities. Jessica has held several positions within Voya, leading and executing many of the company’s strategic programs within the Corporate Strategies Group over the last five years (including the IPO from the Dutch parent company ING), and most recently the Analytics Center of Excellence. Voya Cares Center of Excellence seeks to promote disabilities inclusion throughout the enterprise and support the practice of Special Needs and disability planning and advocacy.
She leads the Voya Cares program for advisors and institutional clients, which supports practice-management and development in Special Needs Planning. She manages many of the Voya-NFP relationships in the disabilities community, such as Special Olympics, National Down Syndrome Society (NDSS) and NEXT for Autism. She is the Vice Chair and founding member of the Georgia Business Leadership Network (a local chapter of the US Business Leaders Network, which works to advance worksite and employment inclusion). For Voya she leads the US Business Leaders Network’s Disabilities Equality Index assessment.
Jessica has advocated in Congress for the ABLE Act 2.0 legislation and supports local events and activities for the NDSS and Special Olympics in Georgia. She was recently featured in Wealth Management Magazine for an award that Voya received in recognition of its leadership of the People with Special Needs Task Force in the Practice Management category.
Harrison van der Lee is a sophomore at the College of Charleston. Working toward a certificate in Hospitality and Exercise Science as part of the R.E.A.C.H program, Harrison has held 3 paid internship positions including Mail Services Intern for the College of Charleston, Assistant Coach and Operations Associate for Charleston Youth Soccer League, and Bellman and Concierge Intern at the French Quarter Hotel in Charleston, while attending classes. Last summer, Harrison worked in Corporate Services for Alix Partners, an international Management Consulting Firm, in New York City. His favorite experiences working for Alix Partners include attending their “Americas” sales conference in Orlando and meeting the head of the NY Bureau of the FBI. Harrison plans to return to Alix Partners this summer to continue learning about the Management Consulting business, successfully working in an office environment and learning to better navigate NYC on his own.
When not in Charleston for school, Harrison lives with his parents in Tuxedo Park, New York. Harrison is an avid sports fan and participant, partaking in crew, sculling, basketball, wrestling, squash, tennis, court tennis, swimming and skiing. He is also an enthusiastic movie goer and professional sports fan.
Pam van der is the mother of 21-year-old Harrison, a young man with Down syndrome. Pam was the President of the NDSS board from 2005-2008, as well as the VP of Corporate Marketing, Chairman of the Marketing, Licensing and Research Councils for Viacom. Prior that, Pam served as the VP of Promotions Marketing for Nickelodeon. Most recently, Pam worked as the Chief Marketing Officer for AltX, a financial technology start-up, based in San Francisco.
Pam and her business partner are currently working on the creation of Joyful, a social media app that will help people 16+ with Down syndrome, connect with other individuals with Down syndrome to easily and securely expand their social circles and facilitate the development of on-line and in-person friendships. Joyful’s mission is to give people with Down syndrome the tools to safely, securely and independently manage and expand their relationships to live fuller, richer lives.
Excited by the opportunity to hear directly from adults with Down syndrome, Pam is sharing her vision for Joyful at the Adult Summit to gauge interest and to use the feedback that she receives to shape the Joyful experience.
Thomas F. Welch, Jr.
Thomas F. Welch, Jr., of Olney, MD, is President and CEO of Johnson Rooney Welch, Inc., an insurance underwriting management firm, and a wholly-owned subsidiary of Aon Corporation (London, UK).
Tom is also a founder and CEO of Rosaria Communities, Inc. Affiliated with the Archdiocese of Washington, Rosaria is a not-for-profit organization which acquires and renovates single-family homes to create residential opportunities for intellectually disabled adults. Rosaria partners with care provider, Jubilee Assoc. of MD, a Mennonite ministry. Rosaria also partners with the local Catholic parish community to provide neighborly support for residents.
Married for 45 years, Tom and his wife Lynn have five children, two of whom are intellectually disabled. Their daughter, Colleen, who passed away suddenly in 2013 at age 22, had Down Syndrome. Tom and Lynn also have a 5-year old granddaughter who has Down Syndrome.