North Carolina Down Syndrome Conference
Saturday, November 16th
On-line registration closes November 10th
|8:30 – 9:00 Registration/Breakfast|
|9:00 – 10:30 Keynote|
|10:30 – 10:45 Break|
|10:45 – 12:15 Breakout Session 1|
|12:15 – 1:15 Networking Lunch
Lunch included with registration
|1:15 – 2:45 Breakout Session 2|
|2:45 – 3:00 Break|
|3:00 – 4:30 Breakout Session 3|
|8:30 – 3:00 Exhibit Booths|
Breakout Session One
In this workshop we will discuss successful strategies for promoting competence and self-esteem. For example, why dreams and fantasies are so important, and how it is possible to promote independence by targeting specific areas of weakness. Finally, we will briefly discuss what some people have mistakenly termed “autistic features” and discuss why “sex education” and social skills are so important, particularly as more and more people are in community settings.
This session will cover informal and formal resources to help families build a “Circle of Support” from infancy through adulthood. We’ll describe how to build a network of family and community members, identify free and low-cost community resources, and explain government-funded programs available to support your child.
Let’s chat about inclusive education! This informative and interactive session will cover a bit about the rationale for inclusive education but will mainly focus on strategies utilized for success. Strategies will include: universal design for learning (flexible learning environments to accommodate learning differences), peer supports (a network of people who support students throughout their school and community lives), collaborative teamwork (integral to the success of all students, there are many ways to be a positive collaborative team member), and presumption of competence of all learners (assuming all people are capable, able learners, and we assume the highest potential in every person).
This presentation details the relationship between speech and language development and the acquisition of literacy among children with Down syndrome. The specific aim of the presentation is to examine the development of speech, language, and literacy skills in preschool and school aged children. Stages of sound development and language development and the acquisition of phonics and phonological awareness are covered. In addition, the presentation covers the reading comprehension abilities of readers with Down syndrome and on word reading ability, and to investigate how these abilities are associated with reading accuracy, listening comprehension, phonological awareness, and vocabulary. Strategies are modeled extensively throughout the presentation.
Living independently or semi-independently is a dream that can become a reality for people with intellectual/developmental disabilities– if the right support structure is in place. Through trial and error, and with a consistent circle of support of family and friends and a trusted provider of services, living independently can be a reality. Join Sam Hening – a self-advocate living “interdependently” in Raleigh for a year, Suzanne Hening, and Nicole Kiefer, Regional Director for The Arc of North Carolina. Sam and Suzanne will share their personal experiences and journey and how utilizing Supported Living services has enabled Sam to achieve his dream. Nicole Kiefer will also discuss the many facets and opportunities the Innovations Waiver Supported Living Service provides.
Breakout Session Two
This presentation will discuss the importance of Functional Behavior Assessments (FBAs) and the components involved. It is important to know how a child will benefit from the assessment and the accompanying Behavior Intervention Plan. Parents and teachers will be given tips on how to determine why a behavior may be occurring and how to proactively reduce challenging behaviors before they happen. In addition, the importance of teaching replacement skills and how to respond to challenging behaviors will be discussed.
The one question that keeps many families up at night is “What’s going to happen to my child when I am not around?” If you have sleepless nights, this session is for you. Topics will include: how to leave money to your child without disqualifying him/her from government benefits, the difference between wills, trusts, and special needs trusts, guardianship, what is a letter of intent and why you need one, and the importance of beneficiary designations.
In this interactive session, I will discuss special education from birth through twenty-one years old. I will explain the special education process, dissect the “alphabet soup” of special education, discuss highlights of the different transition periods, and emphasize the importance of supporting self-advocacy and self-determination. I will provide strategies for ìgetting to yesî throughout the school years as active, effective participants in the special education system. Not only is it possible to ìget to yesî ñ it is mandatory!
Come learn more about how to make math accessible and students with Down syndrome successful in this session. We will explore North Carolinaís elementary education math standards (standard course of study and extended content). We will cover important foundational skills, the skills and behaviors that serve as a foundation for later learning. Adapting tasks to create opportunities for learning will also be discussed and explored.
Momentum around research for Down syndrome has grown dramatically in recent years. The NIH, the pharmaceutical industry, researchers and clinicians, research-focused foundations, and families are increasingly rallying behind research to spur new treatment options for our loved ones with Down syndrome. There are many novel, promising activities in Alzheimer’s disease, sleep apnea, autoimmune conditions, and more. We are entering a time where families and affiliates are adding research to their most important topics along with education, early intervention, inclusion, and advocacy. This session will provide an update on research advances, including work supported by the LuMind IDSC Foundation. We will also share reasons and resources for families to rally behind Down syndrome research.
Breakout Session Three
Getting ready to potty train your child with Down syndrome and want to know what to expect? Or maybe you’ve already begun toilet training your child but feel like you’re getting nowhere. It doesn’t matter your how old your child is or where you are in the potty training process. If you have questions and want to help your child reach this important milestone (and not lose your sanity in the process), then this workshop is for you.
The 18th birthday can be a joyous occasion but may also cause stress on the parents or caregivers of individuals with disabilities. Parents want options to “protect” their child when they reach the age of majority. This session will explore the types of Guardianship, alternatives to Guardianship, the Guardianship procedure, the rights of people under Guardianship, the issues to consider in evaluating options, and trends in Guardianship.
Advocacy in policymaking is important! Your story and your experience is the force behind positive change in North Carolina. NC healthcare and supports for people with intellectual and developmental disabilities are going through a major change. We need you to be part of the process. Join Julia Adams-Scheurich as she presents on how to make your voice and story heard at the North Carolina General Assembly.
This session will define and describe assistive technology and provide an overview of the variety of types of assistive technology. We will focus on tools for communication, reading, and writing. We will also discuss the importance of the partnership between families, schools, outside agencies, and private therapists in order to maximize success of individuals with Down syndrome and to improve important life skills.
Sexuality and relationship education is more than teaching about sexual activity. It should be an ongoing process starting early and encompassing basic body awareness, health information, communication skills, decision making, and social skills. However, discussing sexuality with children (and adult children!) is challenging for many parents and caregivers. To overcome this barrier and gain comfort and confidence in addressing uncomfortable topics, this session will provide parents and caregivers support and resources to help them begin to talk to their tweens and teens about sexual development and health. Specific topics addressed in this session will include how bodies change during puberty, how hormones affect one both physically and emotionally, and the importance of hygiene.