NDSC 50th Annual Convention - June 23-26, 2022

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 but are an add-on for $69 each. There are two Deep Dive cycles so you have the opportunity to attend two different sessions if you would like.  Deep Dives are not recorded and must be attended “live”.  If you’ve already registered and wish to add a Deep Dive, please call the NDSC Center and we’ll help you with that!

Thursday, June 23 – 4:00 to 7:00 PM

  • A: Connecting the Dots-Understanding Educational Medical Connections (Kate Dougherty, Kishore Vellody)
  • B: Be A Voice: Speech and Language Skills for Adults are More Important NOW than Ever (Jennifer Gray)
  • C: Self-Advocate to Self-Employed: The Path to Entrepreneurship for the Special Needs Family (LaTaasha Byrd) for self-advocates accompanied by a support person
  • D: Down syndrome and Autism Spectrum Disorder: Clinical Features and Treatment and Intervention Strategies (Teresa Unnerstall, Lina Patel, Nicole Baumer)
  • E: Affiliate Leaders: Let’s Take It From the Top (NDSC, GLOBAL, NDSS, DSAIA)
  • F: ESPANOL – Crear un mundo inclusivo comienza con familias que creen (Fabiana Sevilla Godoy)

Friday, June 24 – 8:00 to 11:00 AM

  • G: The Benefits of Being Busy: Strategies to Promote Positive Behaviors (Stacy Taylor)
  • H: Promoting Optimal Health in Down Syndrome (Kishore Vellody, Andrew McCormick, Peter Bulova)
  • I: Digital Solutions to Support Inclusion: Yes, Tech Tools are Effective (Sean Smith)
  • J: Creating Communities of Belonging for Students with Significant Cognitive Disabilities (TIES Center, PBIS Center, OSEP)
  • K: Creating the Best Possible Life for Your Child: Life Planning, Independence and Affordability (Hal Wright)
  • L: Speak Up!  Becoming, Managing, and Promoting the Speaker Within! (Rob Snow) for self-advocates accompanied by a support person
  • M: ESPANOL – ¡Uno, dos, tres y más! Tecnología y Apps para la Comunidad Hispana (Kate Dougherty, Macarena Lizama)

To learn more about each session, see below.

A: Connecting the Dots-Understanding Educational Medical Connections

Kate Dougherty, BA and Kishore Vellody, MD

This session aims to help attendees understand the educational implications of medical diagnosis, as well as shine a light on misconceptions, interventions, and accommodations/modifications to assist in helping children and adults access to life to be their best selves.  Presenters will work through medical guidelines and utilize personal experience and case studies to provide examples and interventions for both home and school.  Participants will:

  • Gain a better understanding of the educational implications of medical diagnosis.
  • Step through recommended medical guidelines and develop a clearer understanding of academic implications.
  • Come away with accommodations/modifications to better assist their child or adult.

B: Be A Voice: Speech and Language Skills for Adults are More Important NOW than Ever

Jennifer Gray, MS, CCC-SLP

Speech clarity and skills of independence are necessary for teens and adults with Down syndrome to be successful. Speech and language services are recommended and readily available for children, but suddenly cease for young adults. Research has shown that speech and language skills continue to need refinement as adults and loss of skill is highly likely without active engagement and continued skill development. As we continue to seek vocational and post-secondary education opportunities for those living with T21, we must ensure each person has the skills to be successful.

Speech clarity and social communication skills are possible for adults living with Down syndrome. The desire to use speech successfully coupled with speech therapies developed specifically for those with Down syndrome will allow adults to achieve social and vocational independence. This Deep Dive session will include evidence-based therapies, individualized resources, and strength-based techniques to foster independence and meaningful relationships. Participants will:

  • Understand the importance of continued speech practice as adults for social and cognitive success
  • Learn how to incorporate simple, consistent, and meaningful practice to new and existing routines to build self-awareness and confidence for enhanced communication success
  • Identify potential dangers to communication growth and ways to maintain hard-earned skills

C: Self-Advocate to Self-Employed: The Path to Entrepreneurship for the Special Needs Family

LaTaasha Byrd, BS, MS

This session highlights the ways in which special needs families can use the talents their loved ones with developmental disabilities have to create independence and employment opportunities. It highlights practical insight into starting a profitable brand that benefits the self-advocate immediately. It also outlines strategies families can put in place years before their loved ones reach the age of employment. ‘Path to Entrepreneurship’ serves to promote their unique abilities and reinforces the notion that starting a business is well within their reach, especially when employers may not promote inclusivity. This workshop illustrates how entrepreneurship is a viable and realistic alternative to hourly employment and will walk participants through creating their very own start-up (start to finish) by the end of the session. Participants will:

  • Leave with an understanding of brand formulation
  • Explore establishing business systems
  • Learn about active and passive income outlets

Participants will need a laptop or tablet and a hand-held device for this presentation. Self-advocate attendees may require assistance from a family member or other support individual. Only one person needs to register for both to attend this session.

D: Down syndrome and Autism Spectrum Disorder: Clinical Features and Treatment and Intervention Strategies

Teresa Unnerstall, Lina Patel, PsyD, and Nicole Baumer, MD, MEd

Individuals with co-occurring Down syndrome and autism (DS-ASD) face additional challenges that can be complex and require specific targeted interventions. Three key areas impacted include behavior challenges, communication, and sensory needs. Led by a physician, psychologist, and 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. Join this interactive session to identify your child’s strengths and challenges, and consider priorities and goals, to help you determine a vision for the future. Together, we will focus on minimizing barriers and emphasizing strengths to maximize your child’s potential, and you will leave with a toolbox filled with practical tips and strategies to help navigate complex systems effectively.  Participants will:

  • Better understand their child’s strengths and challenges, and how this may inform intervention strategies
  • Explore specific treatment intervention options and strategies
  • Identify their child’s strengths and challenges, and consider priorities and goals, to help determine a vision for the future

E: Affiliate Leaders: Let's Take It From the Top

NDSC – GLOBAL – NDSS – DSAIA

Designed for affiliate Leaders, whether staff or board members, this Deep Dive will bring you all the best information from national leaders of NDSC, GLOBAL, NDSS, and DSAIA on working better together, the power of advocacy, and highlighting resource materials.  The national organizations strive to connect families with their local DSA’s and want to provide the supports that you are looking for.  Attendees will also have the opportunity for small group breakouts to share ideas and network with other affiliate leaders.

Current NDSC Affiliate subscribers can request a code to waive the fee for this session by contacting tamara@ndsccenter.org

F: ESPANOL - Crear un mundo inclusivo comienza con familias que creen

Fabiana Sevilla Godoy

El taller se dividirá en 3 etapas. Los primeros 30 minutos abordarán los fundamentos teóricos generales del trabajo con familia, desde el modelo de entornos competentes, para favorecer la educación e inclusión de las personas con síndrome de Down. Durante las 2 horas posteriores, los participantes se dividirán en grupos, y cada uno de ellos transitará por todas las estaciones: I-Identidad y autonomía, II-Comunicación, III-Aprendizaje y habilidades cognitivas. Las estaciones tienen como centro el mismo eje: “generar la creencia sobre las capacidades de la familia/profesional para crear diferentes oportunidades de aprendizaje para la persona con síndrome de Down”. Los últimos 30 minutos se realizará un plenario, en donde los y las participantes compartirán el desafío asumido en cada una de las estaciones, con la misión de creer y crear entornos competentes. (presentado en español)

G: The Benefits of Being Busy: Strategies to Promote Positive Behaviors

Stacy Taylor, EdD, BCBA-D

Problem behaviors can be frustrating and confusing. The good news is that there is a science of learning and behavior that can help you no matter what age or stage your child is in. Once you understand some of these basic principles, you can apply them to a variety of situations. Participants will learn some behavior basics and effective strategies they can use to help increase engagement and promote more positive behaviors at home, at school and in the community. There are great benefits to being busy and focusing on learning to help prevent and reduce problem behaviors. This session will help us all learn ways to keep busy and have fun. Participants will:

  • Learn how active, planned engagement can impact problem behavior
  • Be able to identify multiple strategies for engagement
  • Understand the different functions of problem behaviors and ways to decrease these through prevention, teaching and effective consequences

H: Promoting Optimal Health in Down Syndrome

Kishore Vellody, MD, Andrew McCormick, MD, and Peter Bulova, MD

In this Deep Dive, Dr. Vellody, Dr. McCormick, and Dr. Bulova will discuss optimizing the health in people with Down syndrome. People with Down syndrome are at increased risk for several medical conditions. Many families (and doctors) are not familiar with the most important issues that can occur.  The first part of this Deep Dive will cover the common medical, developmental, and behavioral conditions that occur at a higher frequency in children with Down Syndrome.  The second part of this Deep Dive will focus on the importance of transitional care for teens and young adults with Down syndrome.  The third part of this Deep Dive will focus on adult related healthcare in Down syndrome.

There will be ample time available for open Q&A after the presentations. Questions will be able to be submitted anonymously or asked live, depending on individual preference. While the presenters will not be able to answer specific medical questions for a particular person, we will gladly address general concepts that can help think through possible investigations or solutions to common issues that we see in Down syndrome.  The American Academy of Pediatrics Healthcare Guidelines, which are intended to screen for and hopefully prevent these issues, will be discussed. The recently published Healthcare Guidelines for adults from the Journal of the American Medical Association will be discussed. This information will empower families to advocate for their loved ones with Down syndrome to provide optimal health through preventative care.  The doctors will:

  • Discuss a guideline-based approach to optimizing healthcare of children with Down syndrome
  • Describe the transition process for teens and young adults into adult healthcare
  • Review the recently published healthcare guidelines for adults with Down syndrome

I: Digital Solutions to Support Inclusion: Yes, Tech Tools are Effective

Sean Smith, PhD

For many, the pandemic offered tremendous challenges for supporting individuals in their overall learning. This is particularly true for individuals with Down syndrome. And yet, as a parent of a child with Down syndrome and as an educator who often looks to technology and its role in serving the needs of individuals with disabilities, the pandemic offered a bit of a silver lining. Over the last two years, we have seen the adoption of a number of technology tools that when used can make the difference in educational outcomes for individuals with Down syndrome. This is particularly true in the area of instruction, social emotional development, and behavior. This session will try to highlight a number of these technology solutions and align them with effective practices that when combined can truly support the further inclusion efforts of individuals with Down syndrome. Over this Deep Dive we will explore together the various technology solutions, discuss the way they can be combined with effective practices, play with some of these digital solutions to better understand how they work, and overall understand the knowledge and implementation of these tools to further facilitate the educational outcomes we all seek for our learners with Down syndrome. Together, we will better understand the role of innovation and inclusion and to that end take advantage of a number of the digital tools we have been introduced to, we have used, and we continue to use to support the unique needs of the children we serve.  Participants will:

  • Have a better understanding of the positive outcomes of digital technology solutions, adoptions, and uses during the pandemic that apply now to the classroom be a face to face or online for students with Down syndrome
  • Collaboratively explore the various uses of technology solutions and how they align to effective practices to either support these practices or further enhance these practices to make them even more effective for individuals with Down syndrome
  • Understand how these tools can be used and develop initial skills for immediate adoption in their classroom settings and/or home environments

J: Creating Communities of Belonging for Students with Significant Cognitive Disabilities

Martha Thurlow and Jen Sommerness, TIES Center; Kathleen Strickland-Cohen, PBIS Center; Lisa Pagano, Sabrina Austin, and Shannon O’Neill, OSEP

Everyone wants to be valued and have a sense of belonging in their community, which includes the school community. This sense of belonging spans many different dimensions, including being Welcomed, Known, Accepted, Befriended, Supported, and more. Unfortunately, experiencing a deep sense of belonging in school is often more challenging for students with significant cognitive disabilities, and particularly those with behavioral challenges. This Deep Dive will be led by experts from the U.S. Department of Education’s TIES Center for students with the most significant cognitive disabilities, the U.S. Department of Education’s Positive Behavioral Intervention and Supports Center, and the U.S. Department of Education’s Office of Special Education Programs. Participants will:

  • Learn about the ten identified dimensions of belonging needed for meaningful inclusion in school communities
  • Discover how to use a resource developed by the TIES Center to directly address each dimension of belonging, including providing snapshots of what it would look like, steps schools can take to promote change and areas of reflection for the school community
  • Discuss how to address behavioral challenges that can influence belonging

K: Creating the Best Possible Life for Your Child: Life Planning, Independence and Affordability

Hal Wright, CFP, MBA

The speaker passionately believes that all people with Down syndrome have a right to an appropriate place in the community and the right to make decisions affecting their own lives to the extent capable. He believes that living independently is possible for many of our children with adequate planning, supports, and financial resources. This Deep Dive covers planning for an adult with Down syndrome, including: 1) Developing a life plan, establishing a circle of support, and writing a letter of intent; 2) “A Home of Her Own” (supported independence including affordability); and 3) The Angel Herrera Case Study which presents a summary life plan for a twenty-one-year-old woman with Down syndrome, the estimated cost of her lifetime support, and funding for her special needs trust. The purpose is to give parents a realistic picture of what a comprehensive life plan might look like.  The presenter will:

  • Present the essential elements of a sustainable life plan; including the lifetime supports for a child who could outlive both parents
  • Review the ten supports for semi-independent living with practical guidance for decisions; also the challenge of affordability and how much supported independence could cost
  • Present a realistic life plan, the lifetime cost estimate, and trust funding for an adult with Down syndrome, and urge parents to plan for the possibility early-onset dementia and end-of-life care

L: Speak Up! Becoming, Managing, and Promoting the Speaker Within!

Rob Snow

Speak Up! is a program created by Rob Snow focused on using the abilities of each individual to share their story to others.  Rob is a nationally recognized public speaker, author, former comic, and Creator of The Improvaneer Method. Through his son Henry, who was born with Down syndrome, and the many individuals with developmental disabilities he has taught his improvisation program to, Rob has recognized that all individuals, regardless of their varying abilities can become strong speakers and presenters. Through a highly entertaining and interactive session, Rob will build the voice in each participant in three pivotal ways – becoming the speaker, managing the speaker, and promoting the speaker. Rob can’t wait to find that voice inside each self-advocate and let it roar!  This session will:

  • Provide a path for self-advocates and parents to begin a journey in being a better speaker or presenter
  • Demonstrate through examples and self-advocate interaction the abilities within each of us to find their voice and share it with others
  • Define the differences between various types of speaking/presenting and the path it will take to achieve each

Self-advocate attendees may require assistance from a family member or other support individual. Only one person needs to register for both to attend this session.

M: ESPANOL – ¡Uno, dos, tres y más! Tecnología y Apps para la Comunidad Hispana

Kate Dougherty, BA and Macarena Lizama, MD

¡Con la Dra. Macarena Lizama traduciendo, esta sesión NO será aburrida!

Finalmente, una sesión enfocada en tecnología y apps para hispanohablantes. La sesión se centrará en la tecnología y las estrategias diseñadas para crear acceso a la vida. Esta sesión presentará cómo los problemas médicos pueden interferir en el proceso de aprendizaje y brindará recursos prácticos para superar esas interferencias. Los asistentes obtendrán conocimiento y comprensión de cómo los estilos de aprendizaje auditivos, visuales y kinestésicos para #cadaniño (#everychild) importan. Este taller se presenta desde el punto de vista de la aplicación. Se compartirán filosofías, estrategias y programas desde una perspectiva de alta y baja tecnología y puntos de acceso educativos y de vida. Esta sesión también resaltará algunos de los mitos y conceptos erróneos asociados con el uso de la tecnología, y señalará a los asistentes múltiples recursos GRATUITOS para ayudar a complementar tanto la terapia como los estudios. (presentado en español)