USC UCEDD Community Education Conference 2017
Life with Down Syndrome: Fulfillment, Health, Education, Advocacy and Inclusion
Session Descriptions and Speaker Biographies
Keynote Address
How the Genetics of Down Syndrome is Important to the Latest Research Developments
Randall J. Roper, PhD
Associate Professor of Genetics, Indiana University-Purdue University Indianapolis
This presentation will review the latest research developments and describe important considerations for understanding Down syndrome and investigating potential treatments for Down syndrome traits. We will explore how the genetic basis for Down syndrome may be important in testing potential therapies.
Dr. Randall Roper is an Associate Professor of Biology at Indiana University-Purdue University Indianapolis where he studies how genes in three copies (and others throughout the genome) cause phenotypes that affect individuals with Down syndrome. His laboratory is composed of outstanding graduate and undergraduate students that concentrate their studies on skeletal and neurological traits associated with Trisomy 21. He enjoys training the next generation of scientists and also teaching undergraduate and graduate classes in Biomedical Engineering and Genetics. He earned a B.S. in Molecular Biology from Brigham Young University, a Ph.D. in Immunology and Genetics from the University of Illinois Urbana-Champaign, and was a postdoctoral fellow in Developmental Biology and Genetics at the Johns Hopkins University School of Medicine. In his free time, he enjoys spending time with his wife and four daughters as well as training for and running marathons.
Lunch Keynote Address
Finding Your Voice
Eden Elisabeth Rapp
Pianist, Self-advocate
Hi my name is Eden Rapp. I am 20 years old and I have Down syndrome. I have been a part of CATS (Center for Advanced Transition Skills) for the last 2 years and have worked at an elementary school cafeteria. On the same campus as the program at Harbor College, I have taken different classes like self-defense and writing. I love writing! I recently got accepted to Project Search, which is a job internship at Kaiser hospital for young adults like me. My favorite thing to do in my spare time is the club that I started: UpVoice. Young adults come together to become better readers and stronger self advocates. I also enjoy using sign language and volunteering at Musical Connection Through Inclusion. Words that describe me: hard worker, self advocate, musical and signer.
Oral Placement Therapy - Benefits, Limitations, Research and Resources
Heather Vukelich, MS, SLP-CCC
Speech and Feeding / Oral Placement Therapist
Happy Kids Therapy / Down Syndrome Connection of the Bay Area
This presentation will focus on how strength, stability, muscle tone and the sensory system relates to feeding and articulation development in people with Down syndrome. It will teach what Oral Placement Therapy is as well as who it benefits and who it does not benefit. It will include the advantages and limitations of Oral Placement Therapy as well as provide research based evidence to support the method.
Heather Vukelich has a soul-filling passion for children with Down Syndrome. She is an Oral Placement/Speech and Feeding Therapist and has been part of the Down syndrome community since childhood. Her passion continued through her life volunteering for the Down Syndrome Connection of the Bay Area and local Challenger Baseball League. She has been a practicing, ASHA certified speech - language pathologist since 2003. She has worked inside the doors of the Down Syndrome Connection of the Bay Area since 2008. Today, Heather's passion for inclusion and independence translates directly into her work with children on speech clarity and feeding development. Heather is a certified Talk Tools therapist (Level 4 - Specific to Down syndrome), trained by Sara Rosenfeld Johnson, the creator of the Talk Tools program. Heather's specialty in working with children with Down syndrome also includes knowledge and resources regarding: dietary considerations, communication programs, educational programs, medical considerations, physical and sensory needs, as well as behavioral strategies.
The Why in the What - Know your North Star!
Rebecca Lienhard, MA
Chief Executive Officer, Tierra del Sol
Empowerment, Acceptance, Value and Inclusion are just words if not paired with action. There is no turn-key solution to finding each person's North Star. Learn how individuals with Down Syndrome are finding their North Stars and leading the way for others through careers in the arts as well as traditional workforce development pathways.
Rebecca Lienhard joined Tierra del Sol in 1990. Over the course of her tenure, Ms. Lienhard has advanced Tierra’s ability to increase community integration for people with developmental disabilities. She holds a Master’s degree in Special Education, with emphasis in Moderate/Severe Disabilities and is a graduate of the University of Delaware National Leadership Institute on Developmental Disabilities. Ms. Lienhard serves as the key spokesperson for the agency in local, state, and national venues. She has served on numerous community boards and committees, such as the Vendor Advisory Committee for the California Department of Developmental Services’ North Los Angeles County Regional Center, the State Council on Developmental Disabilities’ Employment First Committee, and serving as Vice President of the Board of Directors for Southern California APSE (Association of People Supporting Employment First). She served a five-year term as a surveyor for CARF, providing consultative evaluation to agencies nationwide seeking CARF accreditation. Through these roles, she has gained a nation-wide view of services, relevant laws, emerging trends, and supporting adult with developmental disabilities.
Teaching Reading and Writing to Learners with Down Syndrome
Terry Brown
Educational Specialist for Learners with Down Syndrome, So Happy to Learn
In this talk, I will be sharing with the audience how to make learning a fun, meaningful and successful experience for both parent and learner.
Terry Brown, affectionately know as "Mrs. Brown" to her learners, has a passion and gift for teaching individuals with different learning styles, especially those with Down syndrome. For the special learner, she has opened doors and broken barriers. Terry's techniques have facilitated successful inclusion strategies and added to the repertoire of tools available to teachers and paraprofessionals alike with great success. Mrs. Brown is an insightful and gifted educator. Her students will read and write, and thrive in ways that many may never have imagined. Terry Brown was named Down Syndrome Association of Orange County’s 2001 educator of the year. Mrs. Brown developed and taught a year long pilot program for DSAOC designed to help parents teach their children to read. Later she developed and taught the same successful program, 'Mano a Mano' for Spanish speaking families, which is now in its 7th successful year. The program has been enthusiastically received with teachers implementing parts of it into their classroom setting. It is Mrs. Brown's hope that all children with Down syndrome will be afforded the opportunity to read and reach their personal and academic potential as she has witnessed many times over what a gift this is to the child and their families.
Inclusive Post-Secondary Educational Opportunities
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Robin Polski, MA |
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Kelly Kulzer-Reyes, MA |
This presentation will introduce and illuminate an inclusive post-secondary educational opportunity available at the Transition to Independent Living (T.I.L.) program at Taft College. Participants will gain knowledge about entry requirements, program philosophy, and the positive experience attending college provides. Additionally, exciting legislative changes will be explored along with examining other inclusive post-secondary educational opportunities.
Robin Polski began her social service career working with children and adults in the mental health field prior to transferring to foster care and adoption. She has facilitated a specialized program that offered social skills development and support groups for the Tehachapi Unified School District; she was a crisis counseling team member for Department of Behavioral Health, San Bernardino County, and has served on Congressman Kevin McCarthy’s Autism Task Force. She instructs in the fields of Child Development and Psychology and for the past 11 years, Robin has taught at the international and nationally recognized Transition to Independent Living Program (T.I.L.) at Taft College. In 2016, she was honored at the teaching success and excellence banquet at Taft College. Having a family member diagnosed with an intellectual disability, she is passionate about assisting adults in acquiring the skills necessary to live independent lives. She received her B.S. in Child Development from California State University Fresno and her M.A. in Human Development from Pacific Oaks College. Presently, she is a PhD candidate in the field of Psychology at Grand Canyon University.
Kelly Kulzer-Reyes started teaching at Taft College in 2007. Prior to California, she taught in Minnesota, Oregon, and Istanbul, Turkey. Most of her teaching experience has been in language development, language acquisition, and English composition. After the birth of her daughter almost five years ago, Kelly became active in legislative advocacy within the Down syndrome community. She is a National Down Syndrome Society DS-Ambassador and has helped re-invigorate our statewide government affairs committee, the California Down Syndrome Advocacy Coalition. In 2016, she was invited to teach in the Transition to Independent Living Program (TIL) at Taft College, the first post-secondary program for people with IDD in the United States. She now uses her eighteen years of teaching experience to meet the diverse learning needs of her students in TIL’s Personal Advocacy classes.
Dating, Sex, Marriage. OH MY!!!
Stacy F. Everson, RN, BSN, C.F.L.E., C.D.D.N.
Executive Director & Founder
SEEDS Educational Services, Inc.
Learn about some dos and don'ts in the BIG relationship we call love. In this talk, we will discuss some common concerns and fears and gain a better understanding of how to support safe relationships.
Stacy began as a Registered Nurse and in 1987 focused her career as a Family Life Consultant/Educator for people with intellectual disabilities. She is a consultant throughout San Diego and an international speaker on topics such as socialization, sexuality, and abuse in the field of cognitive disabilities. She strongly believes in empowering people with cognitive delays through education so they can advocate for themselves. She conducts private and group classes, consults with agencies, and holds trainings on personal safety topics.
Your Choice, Your Plan: A Fundamental Approach To Developing Your Action Plan
Patty Moore
Parent of a son with Down syndrome
Manager, Children, Family & Advocacy Services
Alpha Resource Center of Santa Barbara
You have choices to make when pursuing your goals. Do you follow a tried-and-true path or create your own? With whom do you want to partner? How do you want to communicate? Add today’s advances in technology, and you have even more opportunities to achieve your goals. What remains true at every decision point: you need to know what you want. This interactive workshop will focus on proven strategies to help participants determine what they want and develop a road map for how they are going to get there.
Patty Moore is the manager of Children, Family & Advocacy Services at Alpha Resource Center of Santa Barbara. She became active in the field of early intervention and family support after the birth of her third son who was born in 1986 with Down syndrome. Over the past 27 years, Patty has become recognized as a leader in mentoring families in developing skills in informed decision-making; building parent-professional partnerships; individual and systems advocacy. She is an active trainer on a variety of topics including, Family Voices of CA Parent Leadership, National Standards of Family Strengthening and Support, Transition to Adulthood, and Future Planning. In addition to her work at Alpha Resource Center serving Santa Barbara County, Patty received her certification in mediation in 2014 and is currently serving as an IEP facilitator in Alternative Dispute Resolution.
Inclusive Education for Students With and Without Down Syndrome
Mary A. Falvey, PhD
Emeriti Professor
California State University, Los Angeles
This presentation will address the what, why and how inclusive education works for students with and without Down syndrome.
Dr. Falvey is an Emeriti Professor and teaches part time in the Division of Special Education and counseling at California State University, Los Angeles (CSULA). She was the Dean of the Charter College of Education at CSULA from 2001 – 2013, where she was responsible for undergraduate and graduate degree and credential programs. Prior to being Dean, she coordinated the credential and master’s degree programs in moderate/severe disabilities, as well as the master’s degree program in Inclusion Education at CSULA for 25 years. She has lectured at over 300 international, national, state, and local conferences as well as taught courses at numerous universities throughout the United States, Thailand, Canada, Peru, and New Zealand. She has written, edited, and contributed chapters to over 16 books and has written 4 books, her most recent book: Believe in My Child with Special Needs was published by Paul Brookes Publishing Company. She consults with numerous schools and school districts and parent groups, including Club 21.
Parent and Sibling Discussion Panel
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Kyla Kelly |
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Karen Ford Cull |
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Autumn Rose Trail, M.Ed. |
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Maynor Tecun |
In this panel discussion, we will hear from parents and siblings of individuals with Down syndrome with various perspectives and life experiences. Panelists will share their stories, and answer questions from the audience.
Kyla Kelly is a single mother and passionate advocate for her two-year-old son Cash, who happens to have Down Syndrome. She volunteers for various organizations, but most of her free time is focused on being a Parent Facilitator/Organizer for monthly events for Santa Clarita’s Down Syndrome Support Group -TwentyONEderful. Her passions in advocacy include everything from; how physicians deliver a diagnosis & options to expectant Moms, inclusion for children who have special needs, spreading awareness of hurtful words & labels, and reforming the length of maternity leave. Kyla works full time as a Program Manager for B&B Manufacturing in Valencia, CA. She has seventeen years experience in the aerospace industry with expertise in the areas of Production Control, Procurement, and Program Management. She brings skills in conflict management, problem solving, contract negotiations, project management, leadership, marketing and management to the table.
Karen Ford Cull is the parent of Magnus, a 12 year old boy with Down Syndrome, and his two brothers aged 14 and 7. Originally from the UK, Karen was a college professor in the field of history of political ideas but left academia to focus on family life. The family moved to California in 2005 when USC hired her husband Nick. In 2009 a group of families in the South Bay began meeting monthly in a coffee shop and having playdates. That turned into South Bay Down Syndrome Association becoming a non-profit in 2013. Karen was the organizer of the 2015 SBDSA Inclusion Conference, 'Making Inclusion Better', for parents, teacher and administrators. SBDSA has now become a part of Club 21 as a community group, with Karen as one of the community liaisons. She also volunteers for the PTA and chairs her school's Hands on Art program.
Maynor Tecun was born in Guatemala City, Guatemala. He loves school and wanted to become a doctor. But some dreams are too far away for a poor kid in Guatemala. At the age of 18 he had to leave Guatemala, and came to California. Everything was new to him: new people, new language, new country. A few years later, he found his lost love. Soon he was married and his new life began. With the help of his wife he learned to speak English, finished high school and even went to college for two and a half years. He has two beautiful kids: Melissa, 25 years old, and Matthew, 7 years old. Matthew came with the gift of happiness, Matthew has Down syndrome.
Autumn Trail is an Education Specialist at Rancho Alamitos High School in Garden Grove, California. She is also the younger sister of April Trail, who happens to have Down syndrome. Along with teaching high school, Autumn also works at the Down Syndrome Foundation in their after school academy and volunteers her time at the Down Syndrome Association of Orange County, where she implemented and now maintains a sibling support group for children, ages 8-13 years old, who have a brother or sister with Down syndrome. She credits April with inspiring her to go into her chosen profession and fostering her passion for helping to make life better for people with disabilities and their families. In her spare time, Autumn enjoys running and being on staff at RAD Camp, a camp for children and adults with disabilities. Autumn is extremely honored to be a part of this panel and hopes her input is found to be valuable and helpful.
Aging with Down Syndrome
Linda D. Nelson, PhD, ABN
Board certified Clinical Neuropsychologist
Professor, Emerita, of Psychiatry and Biobehavioral Sciences, UCLA
In this presentation, we will discuss what happens to the brain of people with Down syndrome after age 35. We will unlock the mystery of dementia and Alzheimer’s disease through a review of recent clinical research. Additionally, we will discuss master early detection and how to prepare for future care.
Dr. Linda Nelson's clinical work is primarily devoted to comprehensive neuropsychological assessments and treatment with adults. Dr. Nelson is QME-certified to practice as a Clinical Psychologist. She is on the medical staffs of UCLA Santa Monica Medical Center and Orthopaedic Hospital and Providence St. John's Health Center in Santa Monica, CA. Dr. Nelson has over 25 years of experience working with families and patients in the field of clinical psychology and neuropsychology. Her psychotherapy practice focuses on relational issues in individuals. She is experienced in conducting Forensic Independent Medical Examinations in clinical psychology and clinical neuropsychology.
Conservatorship: What People with Disabilities & Families Need to Know
Bertha Sanchez-Hayden, Attorney, Family Matters Program Manager
Bet Tzedek Legal Services
California already leads the nation in the variety of community living options available for individuals with intellectual and developmental disabilities to choose from. As the state seeks to provide alternatives to state institutions, it is developing new community living options to meet those resident’s needs. The state also wants to lead the nation in the provision of meaningful employment. We will discuss what California is doing in these two areas.
Bertha S. Hayden is an elder law attorney with Bet Tzedek Legal Services who exclusively works in matters involving intellectually disabled adults and their caregivers. In 2009, she launched an innovative pilot program, Family Matters, in Los Angeles County to educate and provide direct legal services to families with special education students on limited conservatorships (adult guardianship) and supported decision making options. Bertha has received the Award of Merit from Legal Aid Association of California and the Jack H. Skirball award for the Family Matters Project.
Research in Down syndrome - from "Mongolism" to Molecular Biology
Anne Tournay, MD
Attending Physician, Child Neurology
Children's Hospital Orange County
