Virtual Convention - June 21 to 26, 2021

Deep Dive Sessions

Attending a Deep Dive Session gives you the chance to spend three hours intensively focused on 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.

Deep Dive Sessions are NOT included in your conference registration.  They will NOT be recorded, so you must attend the live session(s) as scheduled.  You may, however, register to attend more than one Deep Dive Session during the virtual convention. There are ten to choose from, at $29 each.

Monday, June 21st

12 PM EST

  • Promoting Mental Wellness in People with Down Syndrome – Dennis E. McGuire, LCSW, Ph.D.
  • Communication Ready: Language, Speech, and Communication Skills for Adult Life and Employment – Libby Kumin, Ph.D., CCC-SLP

3 PM EST

  • Down Syndrome and Autism Spectrum Disorder: Clinical Features and Treatment and Intervention Strategies – Nicole Baumer, M.D.; Lina Patel, Psy.D.; Teresa Unnerstall
  • Comprehensive Care for Adults with Down Syndrome – Peter Bulova, M.D. and Anna Marie White, M.D.

Tuesday, June 22nd

12 PM EST

  • Medical Update – Pediatric Q&A – Kishore Vellody, M.D. and Andrew Nowalk, M.D., Ph.D.
  • Affiliates LEAD (Leadership, Engagement, Advocacy, Development) – Tamara Pursley, Alexis Glaubitz, and Sheryl Arno

3 PM EST

  • Speech Clarity is IndependenceJennifer Gray, M.S., CCC-SLP
  • IEP’s and Special Education Advocacy – Ashley Meier Barlow, Esq.

Wednesday, June 23rd

12 PM EST

  • The Benefits of Being Busy: Strategies to Promote Positive Behaviors – Stacy Taylor, M.A., B.C.B.A.

3 PM EST

  • Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond, But Don’t React Method – David Stein, Psy.D.

You can read more about each Deep Dive below~

Promoting Mental Wellness in People with Down Syndrome

Dennis McGuire, LCSW, Ph.D., Evanston, IL

During this Deep Dive we will discover creative ways to adapt to challenges of concrete versus abstract forms of thought that affect one’s understanding of time, changes in schedule and routine, the ability to generalize skills across settings, understand communication (such as from bosses, teachers, etc.,) and one’s sense of humor or response to humor.

Dr. McGuire will also reiterate key behavioral characteristics such as self-talk, ‘grooves,’ social sensitivity, and receptiveness to visual memory and cues – with an emphasis on how these characteristics interact and influence each other.  We will discuss how to take advantage of this interaction to solve problems and promote adaptive functioning. For example, he will show how to “reset” a stuck groove (a compulsion) or manage a new situation with the strategic use of self-talk and visual checklists.

About the Speaker: 
Dr. Dennis McGuire received his doctorate from the University of Illinois at Chicago and his master’s degree from the University of Chicago. Dr. McGuire is a behavioral expert with nearly 40 years of experience studying mental health and developmental disabilities of those with Down syndrome.  Dr. McGuire is the co-founder and former Director of Psychosocial Service of the Adult Down Syndrome Center of Lutheran General Hospital in suburban Chicago; the largest clinic for adults with Down syndrome in the United States, addressing the health and psychosocial needs of thousands of teens and adults since its inception in January of 1992.

Dr. McGuire has been a keynote speaker at events around the world and is the co-author of three notable books about promoting the well-being in adults with Down syndrome: Mental Wellness of Adults with Down Syndrome (2006), The Guide to Good Health for Teens and Adults with Down Syndrome (2011), and Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges Second Edition (2021), all published by Woodbine House. He was the recipient of the National Down Syndrome Congress Theodore D. Tjossem Research Award in 2003 and the World Down Syndrome Day Scientific Award in 2010.

Communication Ready: Language, Speech, and Communication Skills for Adult Life and Employment

Libby Kumin, Ph.D., CCC-SLP, Baltimore, MD

This session will focus on receptive and expressive language and communication skills needed for employment and daily living. It will include understanding language, speaking, conversation, social and interactional language and pragmatics, electronic communication, and employment skills. Attendees will discover how these skills can be fostered and learned at home and in school-based and therapy-based settings to be ready for adult life. Dr. Kumin will provide checklists and forms for attendees to document the communication skills that an adolescent or adult has mastered.

About the Speaker: 
Libby Kumin received her bachelor’s degree, summa cum laude from Long Island University, and a master’s degree and a Ph.D. from New York University. She is the founder of the Loyola College Speech and Language Down Syndrome Center for Excellence and is a Professor Emeritus of Speech-Language-Hearing Sciences at Loyola University Maryland.

Libby Kumin, Ph.D., CCC-SLP, is a nationally and internationally renowned expert in speech and language pathology whose expertise is recognized by both professionals and parents alike.  Since 1968, Dr. Kumin has worked with families of children with communication disorders. She specializes in the communication, speech, and language skills of infants, toddlers, children, adolescents, and adults with Down syndrome.  She is also the author of numerous books and articles on the challenges and therapies relative to communication for people with Down syndrome. Her research has led to increased understanding and practical clinical techniques to address the complex communication strengths and challenges people with Down syndrome face. Her work has helped families, speech-language pathologists, classroom teachers, and special educators over her expansive career.

Dr. Kumin has received the Christian Pueschel Memorial Research Award, Meritorious Service, and Exceptional Meritorious Service Awards from the National Down Syndrome Congress. She 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.

Down Syndrome and Autism Spectrum Disorder: Clinical Features and Treatment and Intervention Strategies

Nicole Baumer, M.D.; Lina Patel, Psy.D.; and Teresa Unnerstall

During this Deep Dive, we will examine the complex challenges that individuals with co-occurring Down syndrome and autism (DS-ASD) face and discuss specific targeted interventions. Led by a physician, a psychologist, and a parent, this Deep Dive will explore clinical presentation, medical conditions, education, services, treatment, and intervention options for children with Down syndrome and autism through multiple perspectives.

Attendees joining this interactive session will learn three key areas impacted by a dual diagnosis:  behavior challenges, communication, and sensory needs; how to identify their child’s strengths and challenges; and priorities and goals to consider to help determine a vision for the future. Working together with the presenters, attendees will focus on minimizing barriers and emphasizing strengths to maximize their child’s potential. They will leave with a toolbox filled with practical tips and strategies to help navigate complex systems effectively.

About the Speakers:
Dr. Baumer completed her undergraduate studies in biology and psychology at Skidmore College. She received her Medical Degree cum laude from Harvard Medical School, trained in pediatrics at Massachusetts General Hospital, and completed a fellowship in Neurodevelopmental Disabilities at Boston Children’s Hospital. Dr. Baumer also has a master’s degree in education from Harvard Graduate School of Education. She was a fellow in the Leadership Education in Neurodevelopmental and Related Disorders (LEND) program at BCH/Harvard Medical School.
Dr. Nicole Baumer is a neurodevelopmental disability (NDD) pediatrician/child neurologist at Boston Children’s Hospital and an instructor at Harvard Medical School.  Dr. Baumer is the Co-Director of the Down Syndrome Program at Boston Children’s, where she specializes in treating individuals with Down syndrome, autism, ADHD, and other neurobehavioral disorders. Dr. Baumer’s research involves the characterization and diagnosis of neurodevelopmental profiles in Down syndrome. She studies educational, behavioral, and medical interventions for individuals with Down syndrome, including clinical drug trials. Dr. Baumer has an older sister with Down syndrome and has lifelong experience with individuals with disabilities.

Dr. Patel earned her master’s degree and a doctorate in clinical psychology from the University of Denver’s Graduate School of Professional Psychology.  She completed her postdoctoral fellowship at Stanford University’s Lucile Packard Children’s Hospital. In 2008 Dr. Patel joined the Department of Psychiatry and Behavioral Health at Children’s Hospital Colorado and currently serves as Director of Psychology,  Sie Center for Down Syndrome at Children’s Hospital Colorado.  She is a licensed psychologist specializing in treatment planning, diagnostic evaluation, and intervention. She provides consultation with schools, parent training regarding the management of challenging or unsafe behaviors, assessment for those with a dual diagnosis of Down syndrome and autism, potty training, and desensitization to medical devices such as hearing aids and CPAP, and procedure-related distress.

Teresa Unnerstall is a mother whose passion for her son has also made her a successful author, advocate, educational speaker, and consultant. For decades Teresa has been writing, talking, and educating families, educators, therapists, physicians, and support groups to help them better understand individuals with a dual diagnosis of Down syndrome and autism spectrum disorder (DS-ASD). Since 2012, Teresa has been writing a weekly blog, “Down Syndrome with a Slice of Autism,” which provides information to help guide parents and professionals.  She is the author of “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism,” a book considered by many a must-read for anyone who cares for someone with DS-ASD that covers topics such as early intervention, individual education plans (IEPs) and transition meetings, speech, physical, and occupational therapies, behavior support and applied behavior analysis (ABA), toilet training and puberty issues, wandering and elopement, meltdowns, and augmentative and alternative communication.

Comprehensive Care for Adults with Down Syndrome

Peter Bulova, M.D. and Anna Marie White, M.D., Pittsburgh, PA

This Deep Dive will provide an update on common medical issues, including regression, memory loss and dementia, sleep apnea, and behavioral issues seen at the Adult Down Syndrome Center at the University of Pittsburgh, as well as current research.  It will include recommendations for maintaining health and case studies of several common conditions seen at the Adult Down Syndrome Center. Attendees will hear discussions regarding healthy habits and best practices for medical care of people with Down syndrome, including medical care during COVID-19.

About the Speakers:
Dr. Bulova completed his undergraduate training at Brown University. He completed his residency and chief residency and earned his medical degree at the University of Pittsburgh. He is an Associate Professor of General Internal Medicine and teaches medical students, residents, and fellows at the University of Pittsburgh. Dr. Bulova is currently involved in research on Alzheimer’s disease in adults with Down syndrome, sits on the NIH National Down Syndrome Registry Data Access Review Committee, and is an ad hoc reviewer for several journals, including the Journal of Intellectual Disability Research and the American Journal on Intellectual and Developmental Disabilities. Dr. Bulova also serves on the Executive Board of the Down Syndrome Medical Interest Group and speaks nationally of the care of adults with Down syndrome.

Dr. Anna Marie White received her medical degree from the University of Pittsburgh School of Medicine. She has been in practice for 10+ years and specializes in internal medicine and pediatrics at UPMC/UPMC Children’s Hospital of Pittsburgh. She is also a Clinical Assistant Professor of Medicine at the University of Pittsburgh.

Medical Update – Pediatric Q&A

Kishore Vellody, M.D. and Andrew Nowalk, M.D., Pittsburgh, PA

This Deep Dive will discuss the increased risk for several medical conditions in people with Down syndrome. The session will discuss medical, developmental, and behavioral conditions that occur at a higher frequency in people with Down Syndrome and the American Academy of Pediatrics Healthcare Guidelines, which are intended to screen for and hopefully prevent these issues discussed.  Attendees will leave empowered to advocate for their loved ones with Down syndrome to receive optimal health through preventative care.

The discussion will proceed to explain what we know about COVID-19 in people with Down syndrome.  Doctors Vellody and Nowalk will explore the published data on how COVID-19 impacts people with Down syndrome, provide facts on the COVID-19 vaccinations and share information about the immune response in people with Down syndrome.

Finally, this Deep Dive will also include our annual Convention favorite, which we call “Have a Question? Ask the Doctor!” During this time, families will be able to anonymously submit questions to the presenters on any general medical or COVID-19 related topic.  While the presenters will not answer specific medical questions for a particular person, they will address general concepts that can help think through possible investigations or solutions to common issues that we see in Down syndrome.

About the Speakers:
Dr. Kishore Vellody earned a B.S. in Microbiology from the University of Illinois.  He also earned his medical degree from the University of Illinois at Chicago College of Medicine. He completed his pediatric residency at the Children’s Hospital of Wisconsin in Milwaukee. In 2009 Dr. Vellody was named the Medical Director of the Down Syndrome Center of Western Pennsylvania at UPMC Children’s Hospital of Pittsburgh, one of the world’s busiest clinics dedicated to those with Down syndrome.  He is also a Professor of Pediatrics at the University of Pittsburgh School of Medicine.  Dr. Vellody is the Immediate Past President of the National Down Syndrome Congress and is Co-chair of the NDSC Professional Advisory Council. He is also a member of the American Academy of Pediatrics, the Society of Hospitalist Medicine, and the Down Syndrome Medical Interest Group.

Dr. Andrew Nowalk earned a B.S. in Chemistry from Georgetown University. He completed a Ph.D. in  Microbiology and earned his M.D. at the University of Pittsburgh School of Medicine. He completed both his Residency and Chief Residency in Pediatrics as well as his Fellowship in Pediatric Infectious Diseases at UPMC Children’s Hospital of Pittsburgh-University of Pittsburgh School of Medicine.  Dr. Nowalk is an Associate Professor of Pediatrics and Clinical Director in the Division of Infectious Diseases in the Department of Pediatrics at UPMC Children’s Hospital of Pittsburgh and the University of Pittsburgh School of Medicine.

Affiliates LEAD (Leadership, Engagement, Advocacy, Development)

Tamara Pursley, Alexis Glaubitz, and Sheryl Arno, Atlanta, GA

This Deep Dive is specially designed for staff or board members of Down syndrome organizations. NDSC staff members and seasoned affiliate leaders will provide practical ideas to engage families, ensuring diversity and cultural needs are met; develop skills to speak with media representatives; collaborate with other organizations to increase impact; and ask other leaders questions that will help your organization thrive. You will also learn the subscriber benefits of NDSC’s Affiliate Program, which can support you with accurate and up-to-date information and decades of expertise.

**NDSC Affiliate Program subscribers may send one representative at no charge.  Contact alexis@ndsccenter.org to find out how.**

About the Speakers: 
Tamara Pursley earned a bachelor’s degree from Florida State University. She holds a Certificate of Non-Profit Management and is a graduate of Partners in Policymaking Georgia. Tamara is the Programs and Partnerships Director for the National Down Syndrome Congress. She joined the NDSC Center team in 2013 as a Resource Specialist and has since held the titles of Communications Director, Program Director, and Affiliate Relations Director. Overseeing Programs & Partnerships allows her to build on the relationships she has made over the years and continue to help provide the programs and resources that are the foundation of NDSC’s mission. Prior to joining the team, she served as the Board President of the DSA of Atlanta and worked as the Operations Director for The Civic League for Regional Atlanta.  She and her husband have three boys, and her middle son has Down syndrome.

Alexis Glaubitz is a graduate of the University of West Georgia with a BS in Sociology and is pursuing her master’s degree in Business Administration. She currently serves as the Program Coordinator for the National Down Syndrome Congress.  She worked with philanthropic organizations through high school and college and spent four months in Boulder Creek, California, working with individuals of all disabilities as a camp counselor. She has volunteered for the Special Olympics.

Sheryl Arno has been in the field of developmental disabilities for 29 years. While she started working in the field with children, she has spent most of her career focusing on the transition to adulthood and adult life. Sheryl was the creator of the Inclusive Post-Secondary Education movement in Georgia. She started with Kennesaw State University and now there are 8 programs around the state. Currently, Sheryl is the Executive Director of the Down Syndrome Association of Atlanta. She has been in this role for 4 years and under her guidance, DSAA now supports individuals with Down syndrome throughout their lifespan. While Sheryl is very busy with her work, one of her most special jobs, she oversees the supports for her best friend/mentor’s daughter. Lori is 49 years old, has been married for 17 years, and works at Children’s Healthcare. Lori has Down syndrome.

Speech Clarity is Independence

Jennifer Gray, M.S., CCC-SLP, Denver, CO

This Deep Dive will explore the strengths and needs of those with Down syndrome to improve communication, speech, learning, thinking, and skills of independence that lead to satisfaction and relationships with others. Specific skills and techniques will be taught that may be used immediately at home, school, and anywhere communication, thinking, and remembering occur.

About the Speaker: 
Jennifer Gray M.S., CCC-SLP, is a graduate of  Northern Arizona University who earned her M.S in Communication Sciences and Disorders. She is a certified Speech-Language Pathologist with 20 years of experience treating those with speech, language, and feeding delays and disorders. She has spent the last 12+ of those years specializing in communication and feeding for those with intellectual disabilities and motor speech disorders, particularly those living with Down syndrome.

Jennifer is the owner and operator of Grays Peak Speech Services, LLC, a private practice in northern Colorado. Jennifer and her team of SLPs practice in Early Intervention settings, home, and community settings. As well, they deliver services via teletherapy/telepractice/telehealth. She has worked with individuals with Down syndrome and their families for well over a decade to encourage, reinforce, and develop better ways to access spoken language, speech clarity, and oral functioning. She specializes in expanding the communication abilities of those with limited expressive language by meeting each child and family in natural settings to enhance functional outcomes and promote independence. She has continued to ensure authentic and functional therapeutic outcomes via teletherapy during the COVID-19 pandemic. While most of her work has been with young children, she also has experience working in universities and public schools. She has a passion for helping teens and adults use and maintain clear speech, develop social relationships, improve cognitive and memory skills, and promote better self-awareness and self-care habits to ensure educational, social, and independent living success.

IEP's and Special Education Advocacy

Ashley Meier Barlow, Esq., Fort Thomas, KY

This Deep Dive will explore IEPs and Special Education Advocacy. The session will walk through the IEP document step by step – from Present Levels of Performance to a Transition Plan, Special Education Services, and Placement.  Attendees will gain insight into how the IEP document can be an advocacy tool to facilitate inclusion, get more or fewer services, seek to add or revise supplemental supports, and change service minutes.  Attendees will receive valuable, practical communication strategies that can be implemented at the IEP table and throughout the school year and as a tool when working with your child’s school team to facilitate the IEP.

About the Speaker:
Ashley Barlow completed her undergraduate studies at Miami University, Oxford, OH. She earned a J.D Law degree at Northern Kentucky University—Salmon P. Chase College of Law and holds an Advanced Advocacy Certificate from the Council of Parents Attorneys and Advocates. She participated in the Institute of Special Education at William and Mary College of Law in 2016, returning for the Alumni Track in 2017,  and served as faculty in 2020.  Ashley is a Special Education attorney practicing in Kentucky and Ohio.  She is a former teacher and a parent of a child with Down syndrome.

Ashley is the founder of Ashley Barlow Co., an online business providing free and paid resources to parents, school staff,  and community members on IEP teams. The company offers downloadable checklists, guides, and workshops, a video training course; a podcast; and speaking engagements. Ashley is the President of the Board of Directors for the Down Syndrome Association of Greater Cincinnati, and she avidly volunteers at her sons’ schools. She has presented at many NDSC events and for other federal and state advocacy groups.

Benefits of Being Busy: Strategies to Promote Positive Behaviors 

Stacy Taylor, M.A., BCBA, Orlando, FL

This Deep Dive will address problem behaviors and the science of learning and behavior. Attendees will learn behavior basics and effective strategies to help increase engagement and promote more positive behaviors at home, at school, and in the community. The discussion will focus on the benefits of being busy and learning to prevent and reduce problem behaviors.

About the Speaker:  
Stacy Taylor received her bachelor’s degree in psychology from Rollins College and completed her master’s degree in education at the University of Central Florida. For over 15 years, she has worked as an early interventionist and behavior analyst providing services to people with developmental disabilities and learning/behavioral challenges. She has served as director for three clinics. Currently, She owns and operates a 1:1 therapy program, Advance Behavior & Learning, and a fully-inclusive private elementary school, Advance Learning Academy, in Central Florida. Stacy has worked in a variety of settings, including clinics, schools, and homes. She has also provided training and consultation to parents, teachers, therapists, and agencies and has taught college-level courses in inclusion, learning, and behavior and provides an internship site to help students gain real-world experience. Stacy has spoken at numerous conferences across the country on early intervention and behavioral treatment and serves on the Board of the Down Syndrome Association of Central Florida.

Supporting Positive Behavior in Children and Teens with Down Syndrome: The Respond, but Don’t React Method

David Stein, Psy.D., Wellesley, MA

This Deep Dive will address behavior issues in children with Down syndrome, how they can quickly become engrained, bringing short-term problems that often develop into bad habits that are difficult to change. Attendees will learn how the brain of a person with Down syndrome works, why differences with their brains impact behavior, and how to address behavioral problems using a positive behavior approach specifically designed for children and teens with Down syndrome.

About the Speaker:
Dr. Stein earned his B.S in Clinical Psychology Magna Cum Laude from Tufts University and his doctorate at William James College.  Dr. Stein completed his post-doctoral training at Harvard Medical School and Boston Children’s Hospital, where he remained on staff for several years. He served as Co-Director of the Down Syndrome Program through 2016, before founding New England Neurodevelopment, a private pediatric psychology practice in Wellesley, Massachusetts.

Dr, Stein is a pediatric psychologist specializing in neuropsychological testing and behavior therapy and serves as an Adjunct Professor at William James College. Dr. Stein speaks nationally and internationally and is the author of several scholarly articles and the book “Supporting Positive Behavior in Children and Teens with Down syndrome: The Respond but Don’t React Method.”  He has won numerous awards for his work and is a member of the American Psychological Association (APA), the Society for Clinical Neuropsychology (APA Div 40), the Down Syndrome Medical Interest Group, where he served on the Board of Directors from 2016-2019, and the Massachusetts Neuropsychological Association.