North Carolina Down Syndrome Conference

North Carolina Down Syndrome Conference

Saturday, November 21st – Presented Virtually

Schedule

8:30 Welcome and Plenary Session
Break
10:45 Breakout Session 1
Break
12:30 Lunch with Friends
Break
1:15 Breakout Session 2
Break
3:00 Breakout Session 3

Presenting Sponsor

Gold Sponsors

Welcome and Plenary Session

Down Syndrome and Behavior: The Respond but Don’t React Method
Behavior issues in individuals with Down syndrome can quickly become engrained, which means short-term problems often develop into bad habits that are difficult to change. In this presentation, pediatric psychologist Dr. David Stein looks at how the brain of a person with Down syndrome works, why those differences impact behavior, and how to address these problems using his positive behavior approach designed specifically for people with Down syndrome.

David Stein, Psy.D. is a pediatric psychologist specializing in neuropsychological testing, assessment of neurodevelopmental disorders, and behavioral and cognitive behavioral therapy. Dr. Stein is the founder of New England Neurodevelopment, LLC, in the Greater Boston area.

He was on the faculty of Boston Children’s Hospital and an Instructor at Harvard Medical School from 2010 to 2016. Dr. Stein has spoken nationally and internationally regarding neurodevelopment and related disorders. He is the author of several scholarly articles, chapters, and this book.

Dr. Stein is a graduate of Tufts University and William James College. He completed his APA Internship in Child Psychology at Harvard Medical School/The Cambridge Hospital and his post-doctoral fellowship in Pediatric Psychology at Boston Children’s Hospital & Harvard Medical School.

Breakout Session One

Ditching the Diapers: How to Move Forward with Toileting
This presentation will cover issues related to toileting including the challenges involved in toilet training children with special needs and useful and practical strategies to teach this important skill.

Objectives:
1. Understand the challenges involved in toilet training individuals with special needs
2. Discuss key components of a successful toileting program
3. Review materials and resources for families

Terry Katz is a licensed psychologist and Senior Instructor with Distinction who has been privileged to work with children with developmental disabilities and their families for over 30 years. She co-founded a sleep behavior clinic in 2009 and a toileting clinic in 2011 for children with special needs at Children’s Hospital Colorado. She has worked in both clinics since they were first established. Dr. Katz has helped develop a number of educational materials for caregivers. These include sleep and toileting toolkits for Autism Speaks and a book on sleep, Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families. She also wrote a chapter on sleep in the book When Down Syndrome and Autism Intersect: A Guide for Parents and Professionals (edited by M Froehlke and R.S. Zaborek.) She just recently published a book on toileting: Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience.

Top 5 Issues and Concerns During Puberty
Families often experience anxiety when their son or daughter with intellectual disabilities begins to exhibit changes that occur during puberty. In this workshop, parents will learn about the most frequently identified issues and concerns of parents of tweens with I/DD and practical ways to address them. Visual tools, fun learning activities, and useful resources specifically designed for individuals with intellectual disabilities will be shared.

Terri Couwenhoven, M.S. is an AASECT certified sexuality educator who specializes in developing programs and resources for people who have intellectual disabilities, their families and the professionals who support them. She is the author of Teaching Children with Down syndrome about their Bodies, Boundaries and Sexuality: A Guide for Parents and Professionals, The Girls’ Guide to Growing Up: Choices & Changes in the Tween Years, The Boy’s Guide to Growing up: Choices & Changes During Puberty, and Boyfriends & Girlfriends: a Guide to Dating for People with Disabilities.

When she is not teaching or writing, she is Clinic Coordinator for the Down Syndrome Clinic at Children’s Hospital of Wisconsin. She is the mother of two girls. Her oldest daughter has Down syndrome.

What Happens When I’m Gone? Special Needs Planning for North Carolina Parents
Paul Yokabitus will be answering one of the most frequently asked questions and concerns of parents of children with Down syndrome and other disabilities: “What Happens When I’m Gone? This session will introduce and explain important legal planning tools and strategies to help give parents some peace of mind and a secure future for their loved one. Paul will cover information that every parent should know to help them protect their children in a life without them.

Paul Yokabitis is a Special Needs Planning Lawyer and owner of Cary Estate Planning in Cary, North Carolina. Originally from Grand Rapids, Michigan, Paul found his way to the Triangle where he attended Campbell University School of Law and later planted his roots in the Cary community. Paul helps families across the State of North Carolina with proactive legal planning like Special Needs Trusts and Adult Guardianship, as well as traditional estate planning. He makes the planning process easier to understand and navigate by taking an advisory and educational approach.

Post-secondary Education: It’s not what you think
Pitt Community College Career Academy Program

This presentation offers a summary of Pitt Community College Transitional Studies Department’s Career Academy program. The program was developed in response the passage of WIOA (Workforce Innovation and Opportunity Act) in order to provide instruction and career development to adults with learning challenges and special learning needs, particularly for students who indicated a desire to attain employment. The program features a variety of experience-based career modules and instructional activities focused on teaching adult learners employability skills, career exploration and development, as well as collaboration, interaction, problem solving, decision making, and management skills geared toward helping these adult learners reach their employment goals. In developing this program, the department collaborated with special education teachers, the public school system, career advisors, Accessibility Services, and Vocational Rehabilitation partners for guidance and input into curriculum and possible career choices. Other North Carolina Community College programs will also be discussed. Opportunity for question and answer interaction will be provided.

Laurie Weston, educator for over 40 years, has worked in adult literacy since 1998. As director of Transitional Studies at Pitt Community College, she seeks to develop innovative and effective adult literacy programs with particular focus on project- and experience-based instruction in the context of career development. A Certified Career Development Facilitator, member of Rivers East Workforce Development board and chair of the Next Gen committee, she also participates in a variety of state-wide, community-based and college-wide committees and groups. She presents at both state and national conferences including the National Council of Transitions Network, Adult Basic Skills Professional Development Institute at Appalachian State University, Continuing Education Training Institute, and the NC Works Partner Conference. She is a graduate of the University of North Carolina-Chapel Hill with a BA in Education and East Carolina University with a MA in Educational Administration.

Lunch

Lunch with Friends
Lunch with Friends is an opportunity to meet people from across the country (and a couple of other countries). Make new friends, catch up with people you have not seen in a while, and share resources and ideas. Join Lunch with Friends and choose a breakout room that fits with your needs:

  • Birth – 3
  • Pre-k to Elementary School Age
  • Middle School/Teen
  • Teen to Transition to Adulthood and Adults
  • Educators

Breakout Session Two

Get Your IEP Back on Track, It's Possible!
As parents, teachers, and therapists, we’ve had to make tough decisions through school shutdowns, remote learning, and missed services. Whether your child has regressed during the past 6 months or is thriving within their new learning environment, you have even more critical decisions you need to make going forward.

You will learn:
• 3 Mistakes You Can’t Afford to Make Inside of the IEP During the Pandemic
• What You Can Expect, regarding Covid, at Your Next IEP Meeting
• Missed Services and How to Catch Up without Overwhelm
• What Your School does and does NOT have to do, to provide FAPE

Catherine Whitcher, M.Ed, Founder of the Master IEP Coach® Mentorship + Network, has been building IEPs for the Real World for over 20 years. With experience as a special education teacher and special needs sibling, Catherine knows the importance of helping a child reach their potential both inside and outside of the classroom. She is the host of the Special Education Inner Circle Podcast and currently leads Master IEP Coaches® nationwide in creating collaborative and effective IEP meetings. Her proven methods of building better IEPs have helped thousands of parents and schools work together to prepare students for further education, employment, and independent living.

Is it Sensory or Behavior…and can I change it?
Has anyone ever suggested your loved one with Down syndrome has sensory processing deficits? Can transitioning between activities or places be challenging? Do you find that your loved one seeks out sensory input or maybe even tries to avoid it all together? Sensory processing impacts all of us, but for many individuals with Down syndrome, the inability to control their sensory needs can impact their independence and community participation. Dr. Frank will describe sensory processing and the different ways sensory processing can impact individuals with Down syndrome as they mature. Tips for deciding if it is truly a sensory need or actually a behavioral issue will be shared. Practical sensory activities that can be incorporated daily as well as affordable equipment suggestions will be provided.

Katie Frank, PhD, OTR/L is an Occupational Therapist at the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, IL. She has worked extensively with individuals with Down syndrome of all ages. She has experience with treatment and evaluation as well as leading a variety of groups for individuals with Down syndrome. Dr. Frank has conducted parent training and other educational opportunities for parents and professionals as well as self-advocates both locally and nationally. She earned her PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome. Dr. Frank has been the primary investigator on multiple research studies including individuals with Down syndrome and/or their families and has had her work published in peer reviewed journals.

Publication of the 1st Evidence-based Medical Care Guidelines for Adults with Down Syndrome
The much-anticipated GLOBAL Medical Care Guidelines for Adults with Down Syndrome are now published and available! Learn about the first set of evidence-based, updated recommendations for families and self-advocates (people with Down syndrome) to share with their medical providers across the US. This first version of the Global Guideline covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome, resulting in 14 recommendation statements and 4 statements of good practice. This presentation will cover the guideline creation process, how family focus groups informed the guidelines, and the patient toolkits created to accompany the guidelines. We will discuss how families and self-advocates can access the guidelines and how/why they may differ from previous guidelines. We will also outline the future research needed to build up the existing evidence base and map out a plan for the second version of the guidelines, expected over the next 5-6 years.

Dr. Bulova is an Associate Professor of General Internal Medicine who began working with adults with Down syndrome in 2003. He completed his undergraduate training at Brown University. His medical school, internal medicine residency and chief residency took place at the University of Pittsburgh. He is on the Executive Board of the Down Syndrome Medical Interest Group and speaks nationally of the care of adults with Down syndrome. He teaches medical students, residents and fellows at the University of Pittsburgh and was accepted into the University’s Academy of Masters Educators in 2009. He is clinically involved in research on Alzheimer’s disease in adults with Down syndrome. He is on the NIH National Down Syndrome Research Review Committee and is an ad hoc reviewer for several journals, including “The New England Journal of Medicine, the Journal of Intellectual Disability Research, and the American Journal on Intellectual and Developmental Disabilities.”

Michelle Sie Whitten is the Co-Founder, President and CEO of the Global Down Syndrome Foundation. Global’s focus is research and medical care. In just 10 short years the organization has succeeded in lobbying congress so that the National Institutes of Health increased funding Down syndrome research for the first time in two decades. In fact they tripled the number. Global also provides excellent medical care to over 2,000 patients and supports over 200 scientists through its affiliates at the Sie Center for Down Syndrome and the Crnic Institute. Michelle has been the architect for Global’s work including the Global Medical Care Guidelines for Adults with Down syndrome. Prior to her career in the non-profit sector Michelle worked in the cable TV industry and ran the north and southeast Asia assets for Liberty Media. She holds a Master of Arts degree in International Studies and a Graduate Certificate in Business Administration, both from Harvard University. She studied Mandarin Chinese and Women Studies at Peking University, and graduated magna cum laude with a BA in Asian Studies from Tufts University. She is first generation Chinese-Italian, married to a Brit. They have two kids, Sophia and Patrick and Sophia has Down syndrome.

Policy Updates for North Carolinians with Disabilities
Disability Rights North Carolina (DRNC) is the federally mandated protection and advocacy agency that protects and advocates for the rights of people with disabilities in North Carolina. DRNC Policy Attorney, Meisha Evans, will forecast what’s to come at the North Carolina General Assembly for the 2021 legislative session. She will also provide updates on recent DRNC litigation concerning Olmstead. A judge recently ruled that the State of North Carolina and the NC Department of Health and Human Services violated the NC Persons with Disabilities Protection Act, potentially changing the landscape of services for people with disabilities in NC.

Meisha Evans joined Disability Rights North Carolina in February 2018 after spending four years reviewing wrongful conviction claims for indigent North Carolina inmates. Evans received her bachelor’s degree from Virginia Tech and her law degree from UNC School of Law. Meisha decided to pursue a law degree after seeing family members struggle to receive accommodations in school. She recently joined the board of Arts Access, Inc., North Carolina’s only nonprofit solely dedicated to connecting people with disabilities to the cultural arts.

Breakout Session Three

Sleepless Children and Exhausted Parents – Understanding Sleep Problems and Exploring Options
This talk is designed for parents and providers who want to learn more about sleep, why children with special needs may have difficulty sleeping, and what they can do to help everyone in the family sleep better. The session will be informative and practical, providing families with ideas that they can use at home.

Objectives:
1. Review information about the basics of sleep
2. Discuss reasons why children with special needs have difficulty with sleep
3. Identify treatment strategies that will help children (and their families!) sleep better

Terry Katz is a licensed psychologist and Senior Instructor with Distinction who has been privileged to work with children with developmental disabilities and their families for over 30 years. She co-founded a sleep behavior clinic in 2009 and a toileting clinic in 2011 for children with special needs at Children’s Hospital Colorado. She has worked in both clinics since they were first established. Dr. Katz has helped develop a number of educational materials for caregivers. These include sleep and toileting toolkits for Autism Speaks and a book on sleep, Solving Sleep Problems in Children with Autism Spectrum Disorders: A Guide for Frazzled Families. She also wrote a chapter on sleep in the book When Down Syndrome and Autism Intersect: A Guide for Parents and Professionals (edited by M Froehlke and R.S. Zaborek.) She just recently published a book on toileting: Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience.

Incorporating Visual Supports, Sensory Strategies, and Social Skills to Promote Mental Wellness
This presentation will share information about three different non-medicinal strategies that can be used to promote health and mental wellness. The strategies include sensory techniques, visual supports, and development of socially appropriate behaviors. Details will be shared on how sensory techniques can help with transitions and behavior (especially during medical procedures and self-care tasks), visual supports can be used to teach new skills or improve task performance, and socially appropriate behavior helps with having healthy social interactions at home and in the community. Resources will be shared.

Katie Frank, PhD, OTR/L is an Occupational therapist at the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, IL. She has worked extensively with individuals with Down syndrome of all ages. She has experience with treatment and evaluation as well as leading a variety of groups for individuals with Down syndrome. Dr. Frank has conducted parent training and other educational opportunities for parents and professionals as well as self-advocates both locally and nationally. She earned her PhD in Disability Studies from the University of Illinois at Chicago, where her dissertation was “Parents as the Primary Sexuality Educators for their Adolescents with Down Syndrome.” Dr. Frank has been the primary investigator on multiple research studies including individuals with Down syndrome and/or their families and has had her work published in peer reviewed journals.

Down Syndrome: The Early Years
Are you new to the journey of parenting a child with Down syndrome? It can often feel overwhelming and confusing to know where to begin or gain a clear understanding of certain needs. This session is ideal for expectant parents, new parents, and caregivers with children up to the age of 3 years old. We will cover some basic Down syndrome facts, but attendees will learn more about:
1. Specific healthcare needs of children with Down syndrome
2. What therapies to focus on as part of early intervention
3. Benefits your child may qualify to receive
4. How to become your child’s best advocate
5. Family life and how to support yourself and your loved ones
6. The process of transitioning from early intervention to Pre-k services

We will also look ahead to the future. Attendees will be able to prioritize next steps for the overall care of their loved one with Down syndrome. Time will be allotted for Q&A so bring your questions and concerns.

Mahala Turner holds a bachelor’s and master’s degree in Special Education. Additionally, she received a certification in School Psychometry that allows her to administer and interpret educational assessments. Mahala has twelve years of experience as an educator in a variety of settings, grade levels, and educational environments. Currently, Mahala is the Family Support Specialist for the North Carolina Down Syndrome Alliance (NCDSA) providing assistance to families of children with Down syndrome across the lifespan. Through her work at the NCDSA, she is the facilitator of the North Carolina First Call Program. The First Call Program provides support to families when they receive a diagnosis of Down syndrome and welcomes new families with resources and information, connects new families with trained parent mentors, and nurtures an online space and social events for families to connect and communicate with one another. She is the teacher and facilitator of The Learning Program, a program that uses effective teaching strategies and customized materials to support families in the educational process of teaching their child reading and math. Mahala also plans medical outreach efforts by providing accurate and up to date information to medical providers ensuring they are prepared to deliver a diagnosis of Down syndrome and the best care possible for patients with Down syndrome. Mahala is also the parent to eight year old twins and three year old Beau. Beau just happens to have Down syndrome.

Innovations Waiver 101
The NC Innovations Waiver is a federally mandated Medicaid Waiver program for individuals with intellectual disabilities and other developmental disabilities. It is designed as an alternative to institutionalization by providing Home and Community Based Services (HCBS) to individuals allowing them to live in the community of their choice. It provides support to give individuals and their families more control over their lives by offering a large array of service options to the Waiver recipient. Innovations 101 will cover the important basics of this important program including: Goals of NC Innovations Waiver, eligibility requirements, care coordination, I/DD services, (b)3 services, the Registry of Unmet Needs, and more.

Timothy Simmons is from Greensboro, North Carolina and the happily married father of four. Tim joined Cardinal Innovations Healthcare in 2012 after his daughter’s case manager requested that he become a voice for families within the organization. Tim shares his knowledge as the parent of a child who will need around the clock care for her entire life. He enjoys providing education and navigation to families and individuals for Mental Health, Substance Use Disorders, and Intellectual and Developmental Disabilities. Tim’s goal in his work is to help everyone understand the realities of the services that are available.