Why should I attend a Pre-Conference session?
Attending a Pre-Conference session gives you the chance to spend four hours digging deep into one specific topic. The sessions, presented by nationally known speakers, are structured to include content that is research-based, share best practices, and provide proven “how to” strategies. All sessions will include time for Q & A.
Pre-Conference sessions will be held on Friday, July 13 from 8:00am – 12:00pm.
Pre-Conferences are not included in your general convention registration and require an additional registration fee and the selection of one of the Pre-Conferences offered. Pre-Conference registration and selection is an option included in the annual convention registration process. (Please note: You are not required to register for the general convention to attend a Pre-Conference.)
Pre-Conference handouts are issued only to the person registered for the session.
Space may be limited in some sessions, so register early. On-site registration cannot be guaranteed.
- Pre-Conference A: Speech
The Goal Is Understandable Speech: How Do We Get There?
Libby Kumin, PhD, CCC-SLP
Loyola University Maryland
What makes speech difficult to understand? How can we help children with Down syndrome develop speech that is easier to understand? There are many factors that affect speech intelligibility in children and adults with Down syndrome, but the occurrence and combination of factors are different for each person. Dr. Kumin will present a framework that can be used for identifying, analyzing, and treating the factors that affect speech intelligibility for your child, such as rate, articulation, oral motor skills and childhood apraxia of speech. Attendees will learn how to write IEP goals that target factors affecting speech intelligibility, develop a home-school communication plan, and use home activities to practice speech skills.
• Present a framework for identifying factors that affect speech intelligibility in children and adolescents with Down syndrome
• Learn how to write IEP goals to address issues that relate to speech intelligibility in your child with Down syndrome from birth to adulthood
• Learn how to work with SLPs to understand evaluation and treatment of the individual factors that affect speech intelligibility difficulties
About the Presenter:
Dr. Libby Kumin is a Professor of Speech-Language-Hearing Sciences at Loyola University Maryland. Since 1968, she has worked with families of children with communication disorders. She specializes in communication, speech, and language skills of infants, toddlers, children, adolescents, and adults with Down syndrome. Her book, Early Communication Skills in Children with Down Syndrome, and talks have helped families, speech-language pathologists, classroom teachers, and special educators. Her research has led to increased understanding and practical clinical techniques to address the complex communication strengths and challenges faced by people with Down syndrome. Dr. Kumin has received the President’s Award from the National Down Syndrome Society, the Christian Pueschel Memorial Research Award from the National Down Syndrome Congress, and the 2008 Best Paper Award for her work on computer usage in children with Down syndrome. Dr. Kumin is listed in Who’s Who in America, Who’s Who in Medicine and Healthcare, and Foremost Women of the Twentieth Century. She is an active clinician, teacher, researcher, and scholar whose heart shines through her work.
- Pre-Conference B: Inclusion
Inclusive Practices: Transforming Education/Transforming Lives
Christi Kasa, PhD
Come and get inspired and geared up to transform your school. Over 35 years of research shows that inclusive education is beneficial to all students. The examples, strategies, and activities in this presentation will support you to create successful inclusive classrooms for students with Down syndrome and other complex support needs. Come engage in learning to create meaningful lives and full participation in school.
• Understand and identify strategies in strength-based learning and presuming competence
• Use the Big Idea template to guide decisions regarding accommodations and modifications
• Identify visual support strategies and individual supports that provide access to academics
About the Presenter:
Dr. Christi Kasa is an Associate Professor for the Department of Teaching and Learning in the College of Education at the University of Colorado. Her teaching, research, and consulting are guided by her passion to create successful inclusive schools for all students. Christi teaches both graduate and undergraduate classes focusing on differentiated instruction, best practice for inclusive schooling, and communication strategies for people with autism. Christi began her career teaching in the public schools of California as a general education teacher and special education teacher. Christi also is the Director of the Office of Inclusive Services that provides support to students with intellectual disabilities to attend the University of Colorado.
- Pre-Conference C: Aging & Alzheimer's
Extending the Continuum of Care: Aging Adults and Alzheimer’s Disease
Dennis McGuire, PhD, LCSW
Senior Consultant, Global Down Syndrome Foundation
Bryn Gelaro, LSW
Director of Adult Initiatives and Special Projects, Global Down Syndrome Foundation
Huntington Potter, PhD
Professor of Neurology, Center Director, Alzheimer’s Disease Program, Linda Crnic Institute for Down Syndrome
The average life expectancy for adults with Down syndrome has nearly tripled since the 1980s. To ensure people with Down syndrome are living both longer and healthier lives, we must educate families, caretakers, and providers and increase the scope of services available to support adults throughout the aging process. In this session you will learn about the behavioral and developmental processes typical of many older adults with Down syndrome, as well as common experiences and concerns identified by families and self-advocates. While every person’s aging process is different, there are key considerations, including characteristics that can serve as coping mechanisms, a unique health spectrum, and a premature aging process, specific to this population that should inform the care and the creation of services for aging adults. In the second half of the presentation, we will review the most recent research discoveries related to Alzheimer’s disease and Down syndrome. Find out how these discoveries are being translated into practice and what families and professionals need to know about Alzheimer’s disease to support aging adults with Down syndrome.
• To educate people with Down syndrome and their families/caregivers about the health and safety challenges they face as adults
• To educate people with Down syndrome and their families/caregivers about Alzheimer’s disease and why it affects so many people with Down syndrome
• To discuss opportunities for improving healthy aging of adults with Down syndrome including current approaches to drug therapy
About the Presenters:
Dr. Dennis McGuire is a senior consultant for the Global Down Syndrome Foundation and a consultant in private practice. He is the former Director of Psychosocial Services for the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago. Dr. McGuire helped to establish the Adult Down Syndrome Center which has served the health and psychosocial needs of over 5000 adults with DS since its inception in 1992.
Bryn Gelaro is a social worker with a passion for behavioral health of adults with Down syndrome. She was a consultant for Global from 2015-2017, at which point she became the Director of Adult Initiatives and Special Projects in 2017. Her work includes furthering Global’s adult care initiatives, serving as an executive committee member and co-author of the Adult Medical Health Care Guideline update, and supporting Global’s efforts to open a world class medical clinic for adults with Down syndrome. While completing her master’s, she finished her graduate field training at the Adult Down Syndrome Clinic in Chicago, IL.
Dr. Huntington Potter is Professor of Neurology and Director of Alzheimer’s Disease Research in the Department of Neurology and the Linda Crnic Center for Down Syndrome at the University of Colorado, Denver. He discovered and is devoted to studying the mechanistic relationship between Alzheimer’s disease and Down syndrome. Prior to joining UC Denver, Dr. Potter studied, researched, and taught for 30 years at Harvard University. He also designed and directed the Florida Alzheimer’s Disease Research Center at USF and was elected President of the Faculty at the College of Medicine and President of the USF Tampa Faculty Senate. From 2004-2008, he was CEO and Scientific Director of the Johnnie B. Byrd Sr. Alzheimer’s Center & Research Institute at USF, during which time the Institute built the largest free-standing Alzheimer’s disease research institute in the world and developed 7 new treatments for Alzheimer’s disease in preparation for human trials.
- Pre-Conference D: Behavior
Behavior & Down Syndrome: The Respond but Don’t React Method
David Stein, PsyD
New England Neurodevelopment, LLC
Behavior problems impact approximately 30% of children with Down syndrome. Left untreated, these same children often exhibit behavior problems as adults, limiting work and independent living opportunities. In order to address behavior problems effectively, one must understand the brain-based reasons for these challenges and direct treatment appropriately. This workshop will present the basic neuroscience of Down syndrome and how this informs effective behavior management, with practical strategies provided for use in the home and school settings.
• Understand the basic neuroscience of Down syndrome and its impact on behavior
• Understand the theory underlying effective behavior management strategies to support individuals with Down syndrome
• Take home specific tools for use in the home and classroom for supporting positive behavior for individuals with Down syndrome
About the Presenter:
Dr. David Stein is the founder of New England Neurodevelopment, a pediatric psychology practice in Boston. He is the author of Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond but Don’t React Method. Dr. Stein has served as Co-Director of the Down Syndrome Program and a pediatric psychologist within the Division of Developmental Medicine at Boston Children’s Hospital, as well as an instructor at Harvard Medical School. Dr. Stein’s clinical work is focused on neuropsychological testing, behavior therapy, and parent training with children who have neurodevelopmental disorders. Dr. Stein’s research is focused on accurate phenotyping of complex and comorbid neurodevelopmental conditions, factors affecting long-term outcomes, and quality improvement.
- Pre-Conference E: Transition
Creating the Best Possible Life for Your Child: Life Planning, Independence and Affordability
Hal Wright, CFO
Special Needs Planning Consultant
People with Down syndrome have a right to a good life, an appropriate place in the community and to make decisions for themselves to the extent capable. Mr. Wright will describe how to create a life plan to enable the best possible life. He will cover how to plan for and transition to supported independence. He will also address the cost of independence and lifetime support so families can assess affordability. Parents with children of all ages are welcome because it is the children age 8 and under who may become the 4th generation of adults with DS, a generation who will live independently, find meaningful employment and perhaps escape from poverty. However, we must start now to teach them the life skills for self-management and independence to give them the opportunity.
• To raise parental awareness of the importance of life planning and the teaching of the empowerment skills for independence from the earliest age.
• To describe the nine supports for independent living and how to plan for the transition to independence.
• To present the cost of independence and lifetime financial support so parents can assess the issue of affordability.
About the Presenter:
Hal Wright is a parent of a daughter with Down syndrome who lives in her own apartment. He is a retired Certified Financial Planner (CFP) who manages a consulting practice helping parents create a comprehensive plan for their child’s future. He is a nationally known speaker on special needs planning and has given workshops at the NDSC for nine of the past eleven years. He is the author of a book published in 2013, “The Complete Guide for Creating a Special Needs Life Plan.” He serves on the Colorado Developmental Disabilities Council by Governor’s appointment and is a registered State lobbyist.
- Pre-Conference F: DS-ASD
DS-ASD 101: Understanding the BASICS of Co-Occurring DS-ASD
Charlotte Gray, Executive Director, Down Syndrome-Autism Connection
Jeanne Doherty, President, Down Syndrome-Autism Connection
Down syndrome and autism can be challenging disabilities separately; however, when combined, the challenges can be quite complex and oftentimes are misunderstood by the family members and professionals in the individual’s life. This workshop will take a look at what we know about DS-ASD, explore basic behavioral red flags from childhood through adulthood, learn more about the differences in thought processes and the strategies that can be used, and discuss the importance of building a support network and care team through the lifespan.
• Identify basic criteria for diagnosing autism spectrum disorder
• Identify behaviors/signs that may indicate co-occurring Autism Spectrum Disorders in children, teens, and adults with Down syndrome
• Have an understanding of the differences in thought processes and gain tools/techniques on how to help with information processing disorder
About the Presenters:
Charlotte Gray is the proud mother to her 15-year-old son Jacob who has Down syndrome and other complex needs including autism. She is a co-founder of Morning Travelers, a playgroup for families who have a child with Down syndrome. When her son was diagnosed with autism in 2008, she founded Morning Travelers 2, a support group for families who have a child with DS-ASD. Charlotte has worked for a child psychologist as a Floor-Time Therapy Consultant for children with ASD. Charlotte has her MBA in Accounting and serves as the Executive Director of the Down Syndrome-Autism Connection.
Jeanne Doherty lives in the Boston area with her husband and three daughters, including Jessica who was diagnosed with DS-ASD at age 7. Jeanne has supported families with loved ones with DS-ASD for over 10 years. She is currently the Family Support Specialist for the Massachusetts Down Syndrome Congress. She also serves as Board President for Alternative Services, Inc., a company that owns and operates group homes, as well as President of the Board for the Down Syndrome-Autism Connection.
- Pre-Conference G: Public Speaking
Speak Up! Using Public Speaking to Open Social and Workplace Opportunities
Nationally Recognized Professional and Motivational Speaker
Stand Up For Downs
PUBLIC SPEAKING. It’s one of our biggest fears, but when we get good, or even decent at it, public speaking can open so many doors both socially and in the workplace. For those self-advocates who are asked to speak frequently or want to begin speaking publicly more, this session is for you! It will offer strategies on reducing your fears of speaking, tips on honing the perfect speech, and the role humor should play in your speeches. The session will also offer tips on managing speaking engagements, how to prepare the speech, what the contract should look like, and even how much to charge. The strategies and ideas offered in this workshop can be used to build better communication skills, grow self-confidence, and shine new lights on future opportunities. Let’s get speaking! A limited number of seats will be available for this session and each self-advocate must attend with a support person.
• Provide strategies for building public speaking skills
• Provide insight for the management of speaking opportunities
• Offer ideas and information on promoting the speaker
About the Presenter:
Rob Snow is a nationally recognized motivational speaker and founder of the non-profit Stand Up For Downs. He has developed Project Spotlight, a program geared towards building improvisation and public speaking skills to open up social and workplace opportunities for those with Down syndrome.
- Pre-Conferencia H: en español
“Ella Tiene Síndrome de Down, Pero yo no”: Cuando el Autorreconocimiento es Dificil y su Falta se Transforma en Barrera Para la Inclusión
Macarena Lizama, MD
Directora Ejecutiva, Centro UC síndrome de Down
Pontificia Universidad Católica de Chile
El autorreconocimiento es el proceso de conocerse a sí mismo y se basa en aprender a querernos, a conocer las fortalezas y debilidades, identificando las características que nos definen como seres individuales. Una de las barreras para el desarrollo saludable de una persona con síndrome de Down, es la falta de autorreconocimiento y de autoaceptación, donde puede haber dificultad en reconocerse en la diferencia, reconocer que les cuesta más aprender o que no siempre se les entiende lo que hablan, entonces, les cuesta mucho aceptarse tal cual son y también aceptar a sus pares con la misma condición, encontrándonos a veces con jóvenes que no están satisfechos consigo mismos, no les gusta cómo hablan los otros o no se enamorarían de otra persona con síndrome de Down. En ese contexto, el poder desenvolverse socialmente, se hace más difícil. Es importante entender que el proceso de autorreconocimiento es dinámico y va cambiando en la medida que las personas tienen interacciones con el entorno y van escribiendo su propia historia. Es así como cuando reconocemos nuestros defectos, podemos proponer cambiarlos y al conocer nuestras virtudes, podemos promoverlas. El objetivo del workshop será reconocer el proceso de autorreconocimiento de las personas con síndrome de Down en su condición, identificar cuando su falta se transforma en barrera de inclusión y discutir herramientas para trabajarlo.
• Reconocer la importancia del proceso de autorreconocimiento de las personas con síndrome de Down en su condición e identificar cuando su falta se transforma en barrera de inclusión.
• Conocer los conceptos de autorreconocimiento, autoaceptación y autoestima
• Compartir elementos para reconocer a las personas con síndrome de Down con dificultad en autorreconocimiento y adquirir herramientas para trabajar el autorreconocimiento y facilitar el proceso de vinculación social con otros.
Acerca del presentador:
Dra. Lizama es la directora Ejecutiva del Centro UC Síndrome de Down. Formada en la Facultad de Medicina de la Pontificia Universidad Católica de Chile, realizó su especialidad de Pediatría en la misma casa de estudios, donde se desarrolla como docente de pre y post grado en Pediatría Ambulatoria. Pediatra de la Red Asistencial UC – CHRISTUS, participa del equipo de profesionales que atiende a niños y adolescentes con Síndrome de Down, área donde también desarrolla su principal línea de investigación. Es autora y co autora de libros relacionados con el Síndrome de Down, como el Manual de Estimulación Temprana para niños y niñas con Síndrome de Down, y del Cuaderno de Supervisión de Salud, es miembro del Comité NANEAS de la Sociedad Chilena de Pediatría y Miembro activo del Down Syndrome Medical Interest Group-USA. Es miembro del Board del NDSC.
- Pre-Conference I: Affiliates LEAD
Affiliates LEAD: A Workshop for Leadership, Education, Advancement, and Direction
National Down Syndrome Congress
Running an affiliate organization, whether big or small, urban or rural, can present challenges and, at the same time, opportunities for continuous learning. This session is designed for leaders (both volunteer and staff) of Down syndrome parent organizations. Facilitated by NDSC affiliate leaders, expertise, ideas, and experiences will be presented on member engagement followed by two breakout sessions chosen by each attendee.
• Fundraising: Thinking Outside the Walks
Kathy Edwards, Development Director, NDSC
• One Location – 44 Counties? How to Reach Beyond
Jolie Ganley, Program Director, NDSC
• Programming 201
Michelle Crim, Executive Director, Down Syndrome Partnership of North Texas
• Yes, You Can – Fiscal and Board Management
Kathleen Forney, Executive Director, Down Syndrome Association of Minnesota