Annual Convention - June 27-30, 2019 - Pittsburgh, PA

Pre-Conference Sessions

Attending a Pre-Conference session gives you the chance to spend four hours digging deep into 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.

Pre-Conference sessions will be held on Friday, June 28th from 8:00 a.m. – 12:00 p.m.

Pre-Conference handouts are issued only to the person registered for the session.
Space may be limited in some sessions, so register early. On-site registration cannot be guaranteed.

Pre-Conferences are not included in your general conference registration.
You may register for the General Conference and add a Pre-Conference session.
You may also register to attend ONLY a Pre-Conference session.

Pre-Conference A: Speech

Communication Foundations for Children with Down Syndrome

Jennifer Bekins, MS, CCC-SLP, Speech Pathology Coordinator, Division of Developmental and Behavioral Pediatrics, Cincinnati Children’s Hospital Medical Center, sister with DS, Cincinnati, OH

Families have many questions about communication in young children with DS, especially, “When will my child talk?” Participants in this interactive workshop will take an in-depth look at speech and language development in children with DS. Discussion will include treatment techniques, current trends in evidence-based practice, and alternatives to spoken communication. Family-friendly tips, tricks, and tools will be shared throughout the workshop. This pre-conference session is geared toward families with children from birth – preschool.

Learning Objectives:
  • Understand how express strengths commonly seen among young children with DS and how these can be used to build communication skills.
  • Understand how to structure a play-based activity to increase the child’s communication response.
  • Locate resources related to at-home activities for specific stages of communication.
About the Speaker:

Jennifer Bekins is the Speech-Language Pathology Coordinator for the Division of Developmental and Behavioral Pediatrics and lead speech-language pathologist in the Jane and Richard Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center. Jennifer has practiced since 2001 upon graduating from Loyola University Maryland. Her focus on children with DS includes speech-language disorders, dual diagnosis of DS & autism, and feeding disorders. Jennifer’s participation in the DS community began in 1988 with the birth of her sister.

Pre-Conference A – Speech

Pre-Conference B: Education - NEW Session

Making Inclusive Education a Reality for Your Child

Jeannine H. Brinkley, Executive Director, and Jeanine Schultz, Director of Training, daughter with DS, both from PEAL Center, Pittsburgh, PA

This session will engage participants in defining an inclusive education and discussing the importance of having high expectations and presuming competence for learners with Down syndrome and other disabilities. We will review the ways that IDEA and the IEP process support inclusive educational practices for all learners and explore the power of supplementary aids and services as a tool for overcoming barriers to learning and participation in general education classrooms. In addition, we will take a look at the potential of Universal Design for Learning principles that result in instruction that is designed to meet the needs of diverse learners. Finally, we will facilitate families in creating a vision for their child and identifying important information to address at their next IEP meeting.

Learning Objectives
  1. Identify how IDEA and the IEP process supports inclusive education
  2. Explain the importance of Supplementary Aids and Services
  3. List the most important things you will share with your child’s IEP team at the next meeting
About the Speakers:

Jeannine H. Brinkley has more than three decades of expertise in inclusive practices, special education, and supporting school teams to transform service delivery, as well as personal experience supporting family members with disabilities. As Executive Director for the PEAL Center, Jeannine leads a statewide organization that provides information, resources and training, as well as individual assistance to families and professionals. In her previous roles providing technical assistance at the State and County levels, she helped to implement the GATEWAYS System Change Program — PA’s first statewide effort to move towards inclusive schools. When the Gaskin Settlement Agreement happened in 2014, she coordinated the PA Department of Education’s implementation of the settlement activities. Most recently, Jeannine has had the privilege to collaborate in conceptualizing and implementing Project MAX, PA’s State Professional Development Grant, focused on building capacity in schools to maximize access to grade level general education curriculum for learners with complex instructional needs.

Jeanine Schultz is the Director of Training at the PEAL Center. She brings over 20 years of experience in advocating for inclusive education, adult and systems advocacy, and transition to adulthood. Jeanine previously worked at ACHIEVA, where she was the Director of Family Supports. She has conducted over 100 trainings through Pennsylvania Training Partnership for People with Disabilities and Families. She has served as a board member for the Down Syndrome Center of Pittsburgh, has a degree in Informational Technology, and is a graduate of The National Leadership Consortium on Developmental Disabilities at the University of Delaware Center for Disabilities. She and her husband are the parents of four children, all with different abilities.

Pre-Conference B – Education

Pre-Conference C: Transition

Building Bridges: A Holistic Approach to Transition

Andrew McCormick, MD, Transition Specialist, Assistant Professor Pediatrics, DS Center of Western PA, Pittsburgh, PA
Liz Mahar, Director, Family & Sibling Initiatives, The Arc of the United States, sister with DS, Washington, DC
Jacqueline Connell, JD, Attorney, ACHIEVA Family Trust, Pittsburgh, PA
Mary Hartley, Consultant, 446 Bridges, Pittsburgh, PA
Stephanie Smith Lee, Senior Policy Advisor, NDSC, Chair, Think College Accreditation Workgroup, daughter with DS, Charlotte, NC
Deb Hart, PhD, Director of Education and Transition, Institute for Community Inclusion, University of Massachusetts, Boston, MA

Becoming an adult is about making choices and making plans to move forward. The journey to adulthood is tough for any adolescent, but for teens with DS there are unique decisions that can be made in advance to encourage independence and success. Considering a holistic transition plan centered on the teenager’s wants, wishes, and interests will support their long-term decision-making and support needs.

A multidisciplinary team of experts from the key areas of transition including decision-making, financial planning, employment, independent living, and healthcare will facilitate this workshop. Speakers will also discuss advocating for real opportunities in employment and postsecondary education during IEP meetings and meetings with vocational rehabilitation and support services. We hope this session will provide the audience with guidance on navigating the transition process and developing an individualized plan to adulthood for your adolescent with DS.

Learning Objectives:
  1. Participants will learn the differences between supported decision-making, power of attorney, and guardianship as they relate to their adolescent child with DS.
  2. Participants will gain an understanding of SSI/SSDI, special needs trusts, and ABLE accounts.
  3. Participants will learn the importance of advocacy during their IEP meetings and with vocational rehabilitation for transition to employment and independent living.
  4. Participants will be introduced to postsecondary education options.
  5. Participants will develop the skills and tools necessary to develop a healthcare transition team.
About the Speakers:

Dr. Andrew McCormick is the Director of the Healthy Transitions Program at the Down Syndrome Center of Western PA. In this role, he has the pleasure of working with young adults and their families on the journey to a successful transition to adulthood.

Liz Mahar is The Arc’s Director of Family & Sibling Initiatives. Previously, Liz spent five years as a consultant and Managing Supervisor for FleishmanHillard, managing stakeholder relations for government-funded public health campaigns on topics including binge drinking, drug abuse, and chronic diseases. She also brings social policy expertise from five years of working on capitol hill. Liz earned a Bachelor of Arts in psychology from the George Washington University in Washington, D.C. Liz is the sibling of a younger sister with DS.

Mary Anderson Hartley has developed a variety of solutions in employment, housing, and services in legislative/policy and real-world systems to increase inclusion for transition-age youth and adults. For the past six years, she has worked with individuals, families, businesses, and organizations through the 21 and Able initiative and #IWantToWork at United Way of Southwestern Pennsylvania, creating a bridge from youth to adult systems and private enterprise that did not previously exist. She is the parent of a 19-year-old son who is advocating through his own transition to adulthood in Pittsburgh.

Jaquelyn E. Connell, JD serves as Trust Attorney for ACHIEVA Family Trust. In her current role, she works with organizations, attorneys, families, and individuals with disabilities on reviewing and establishing special needs trusts. Prior to working at ACHIEVA Family Trust, she focused her practice on estate planning and estate administration. She has extensive experience in drafting and reviewing wills and powers of attorney, as well as advising clients on estate-planning techniques with regard to trusts, real estate, and long-term care. Jacquelyn is a member of the Allegheny County Bar Association and its Law and Disability section. She obtained a Bachelor of Arts summa cum laude and her Juris Doctor from Duquesne University.

Stephanie Smith Lee has over thirty years of experience in public policy including serving in senior Congressional staff positions and as a nationally-recognized disability expert. Since her daughter, Laura, was born with DS in 1982, she has led many successful disability advocacy efforts at the local, state, and federal levels and served as Vice President of the National Down Syndrome Congress in the mid-1990s. As the Director of the Office of Special Education Programs (OSEP) in the US Department of Education, Ms. Lee was responsible for the implementation of IDEA, the federal special education law. As Senior Policy Advisor for the National Down Syndrome Society’s Policy Center from 2005 through 2012, she developed and trained an effective grassroots campaign, advocated with Congress, and directed a postsecondary education project. Ms. Lee is directly involved in developing inclusive postsecondary projects for students with ID in various states and led a successful effort to obtain federal financial aid and model demonstration programs for these students. As Senior Policy Advisor for NDSC, she chairs the Think College accreditation workgroup that developed model accreditation standards for these programs and chairs the committee to promote postsecondary education for students with intellectual disabilities.

Deb Hart is Director of Education and Transition for the Institute for Community Inclusion at the University of Massachusetts, Boston. She has over 30 years of experience working with students with disabilities, their families, and professionals to support youth in becoming valued members of their community via participation in inclusive K-12 education, higher education, and competitive employment. Debra is also the co-author of a book Think College! Postsecondary Education Options for Students with Intellectual Disabilities and numerous other professional and peer-reviewed publications.

Pre-Conference C – Transition

Pre-Conference D: Regression

Regression: Understanding Loss of Skills in Children or Young Adults with Down Syndrome

Brian Chicoine, MD, Medical Director, Advocate Medical Group Adult Down Syndrome Center, Park Ridge, IL

There is a growing number of clinical case reports of adolescents and adults with DS who have shown unexpected and severe regression in cognitive and adaptive functioning, motor function, communication skills, and behavior. As reported by their families, this regression is reported to occur following a period of stable functional skill acquisition in young adolescents or adults.

While there have been several articles published about regression in adolescents and adults with DS, there remains a great deal that is still unknown. In this preconference session, we will refer to this phenomenon as “Adult Regression Syndrome.” We will provide information from published studies and reports; describe why autism and Alzheimer’s disease are excluded from consideration (considered separate entities); report on a working definition of “Adult Regression Syndrome”; and describe clinical features, evaluation, treatment, and prognosis. Emphasis will be given to some of the most challenging patients who manifest catatonia, auto-immunity, sleep apnea, and severe mental health symptoms. Case studies will be shared and time for discussion will be provided.

Learning Objectives:
  1. Participants will leave understanding the diagnosis of “Adult Regression Syndrome” in individuals with DS.
  2. Participants will be stimulated in discussion regarding their own regression experiences.
  3. Participants will be able to use strategies to assess individuals with DS who have regressed.
About the Speaker:

Brian Chicoine, MD is the co-founder and Medical Director of the Advocate Medical Group Adult Down Syndrome Center in Park Ridge, Illinois. The Center has served over 6000 adolescents and adults with DS since its inception in 1992. Dr. Chicoine graduated from Loyola University of Chicago Stritch School of Medicine. He completed his Family Medicine residency at Lutheran General Hospital where he is now a faculty member. He has co-authored two books Mental Wellness of Adults with Down Syndrome and The Guide to Good Health for Teens and Adults with Down Syndrome published by Woodbine House Publishing.

Pre-Conference D – Regression

Pre-Conference E: Behavior

Shake It Off…Effective, Relatable Strategies to Help Improve Behavior at all Ages and Stages

Disponible con interpretación simultánea al español.

Stacy Taylor, MA, BCBA, President, Advance Behavior & Learning and Advance Learning Academy, daughter with DS, Orlando, FL

Behavior can be frustrating, but the good news is that there is a science to learning and behavior that can help parents learn how to better address any behavioral concerns no matter what age or stage their child is in. These strategies don’t have to be complex or cumbersome. Some tips involve prevention, some focus more on effective consequences and, of course, we always want to focus on teaching. Come and learn about new tools for your behavior toolbox that you can actually understand and use!

Learning Objectives:
  1. Participants will learn basic behavioral principles and how the environment impacts behavior.
  2. Participants will learn about functional assessment and how it can be used to treat problem behaviors.
  3. Participants will understand the importance of teaching and replacing problem behaviors in order to improve outcomes.
  4. Participants will learn specific strategies to prevent problem behaviors from occurring.
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 3 clinics and currently owns and operates a 1:1 therapy program, Advance Behavior & Learning, and a fully-inclusive private elementary school, Advance Learning Academy, in Central Florida. Mrs. Taylor has worked in a variety of settings including clinics, schools, and homes. In addition to providing 1:1 treatment to children, she has also provided training and consultation to parents, teachers, therapists and agencies. She 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. She has also enjoyed teaching college-level courses in inclusion, learning, and behavior and provides an internship site to help students gain real-world experience.

Pre-Conference E – Behavior

Pre-Conference F: DS-ASD

Down Syndrome along with Autism Spectrum Disorder: Recognizing the Signs, Understanding the Diagnostic Process, and Exploring Intervention Approaches

Nancy Raitano Lee, PhD, Licensed Psychologist & Assistant Professor, Director, Accelerated BS/MS and MS Programs, Department of Psychology, Drexel University, Philadelphia, PA

Approximately 20% of children with DS meet criteria for a comorbid autism spectrum disorder (ASD). However, less is known about the learning and behavioral challenges and effective intervention approaches for this group. This preconference workshop will describe the signs and symptoms of ASD in children with DS. It will review the diagnostic process, including the tests that are given and the developmental considerations involved with evaluating ASD in children with DS. Video material will be utilized to illustrate the diagnostic process and the signs and symptoms of ASD. During the workshop, research on the learning and behavior challenges that may be experienced by children with this additional diagnosis will be discussed. Suggestions for the types of interventions that may benefit children with DS and comorbid ASD will be provided. Additionally, information about empirically-supported interventions for ASD will be described in order to introduce attendees to the types of approaches that may be helpful for children with DS and comorbid ASD.

Learning Objectives:
  1. Understand key signs of ASD in youth with DS.
  2. Understand learning and behavioral challenges that may be experienced by children with DS and comorbid ASD.
  3. Understand several components of different ASD intervention approaches that may be helpful to draw from for children with DS and comorbid ASD.
About the Speaker:

Dr. Nancy Raitano Lee is a licensed psychologist and assistant professor in the Psychology Department at Drexel University. She received her Bachelor of Science degree in human development and family studies from Cornell University and her doctorate in child clinical psychology from the University of Denver. Her clinical training includes the completion of a pre-doctoral internship at the Children’s Hospital of Colorado and a post-doctoral fellowship at the University of Colorado School of Medicine’s Center for Excellence in Developmental Disabilities. As a post-doctoral fellow, she received specialized clinical training in the diagnosis and treatment of neurodevelopmental disorders with a particular emphasis on diagnosing autism spectrum disorder (ASD) in young children with genetic disorders associated with intellectual disability such as DS. Following her training in psychology, Dr. Lee completed a fellowship at the National Institute of Mental Health focused on the use of structural neuroimaging to study the developing brain in youth with DS and other genetic disorders as well as children with typical development.

Dr. Lee currently leads the LADDER (Learning and Developmental Disabilities Educational Neuropsychology Research) Lab at Drexel where she conducts both clinical and translational research on neurodevelopmental disorders with a particular emphasis on neurogenetic syndromes. She has published on executive function, language, and ASD symptoms in youth with DS and those with sex chromosome disorders. She has also published research on the developing brain in these groups. Dr. Lee’s research has been funded by the Lejeune Foundation and the National Institutes of Health. The long-term goal of her research is to identify novel targets of treatment to ameliorate the cognitive weaknesses that characterize different neurodevelopmental disorders in order to optimize outcomes and quality of life for these groups.

Pre-Conference F – Co-occurring DS-ASD

Pre-Conference G: Public Speaking for Self-Advocates

Speak Up! Using Public Speaking to Open Social and Workplace Opportunities

Rob Snow, Founder, Director/Producer, Professional Speaker, Author, Stand Up For Downs, son with DS, Medina, OH

PUBLIC SPEAKING. It’s one of our biggest fears, but when we get good, or even decent at it, public speaking can open so many doors both socially and in the workplace. For those self-advocates who are asked to speak frequently or want to begin speaking publicly more, this session is for you! It will offer strategies on reducing your fears of speaking, tips on honing the perfect speech, and the role humor should play in your speeches. The session will also offer tips on managing speaking engagements, how to prepare the speech, what the contract should look like, and even how much to charge. The strategies and ideas offered in this workshop can be used to build better communication skills, grow self-confidence, and shine new lights on future opportunities. Let’s get speaking! A limited number of seats will be available for this session and each self-advocate must attend with a support person. (The support person does not need to register and pay to attend.)

Learning Objectives:
  1. Understand strategies for building public speaking skills.
  2. Understand the management of speaking opportunities.
  3. Understand ideas and information on promoting the speaker.
About the Presenter:

Rob Snow is a nationally recognized motivational speaker and founder and executive director of the non-profit Stand Up For Downs.  He is the director and producer of The Improvaneers, a program geared towards building improvisation and public speaking skills to open up social and workplace opportunities for those with DS.

Pre-Conference G – Public Speaking for Self-Advocates

Pre-Conference H: En Español

Neurodesarrollo, Transición y Comportamiento

Dra. Teresa Aguilasocho, Médico Ginecologa, Lic. en Psicología, Tanatologa Familia, Salud y Desarrollo en Síndrome de Down A.C.
Silvia Maravilla Ávila y José Alberto Alonso García, Lic. en Psicología y Terapia Familiar API, Centro de Asesoria Psicologica Integral

La pre-conferencia Neurodesarrollo, Transición y Comportamiento es sobre la transición son los pasos de una etapa a otra, en el momento en la que la persona pasa en estos cambios, hay una serie de procesos que es importante cubrir para lograr el éxito de la siguiente etapa. En estas transiciones, pueden surgir conductas, comportamientos y reacciones emocionales disfuncionales que se presentan en las personas con síndrome de Down y sus familias. Los padres necesitan aprender a ver y observar las transiciones, informándose en acciones y actitudes que los lleven a ser eficaces en el manejo y momento de establecerlas, esto siempre a la par de conductas y comportamientos adaptativos que estén relacionados con los hábitos y reacciones emocionales favorables que los lleven a una transición funcional y exitosa. Esta pre conferencia nos dará una visión integral sobre las áreas de neurodesarrollo y sus transiciones que son claves en la formación de la conducta y comportamiento adaptativo adaptativa presentes en todas las etapas de las personas con síndrome de Down. Conocer, observar y detectar cómo los padres reaccionan en estas transiciones de sus hijos, es clave para el éxito de este proceso que es determinante en su vida, desarrollo personal y social.

OBJECTIVOS:
  1. Conocer que es una transición
  2. Detectar la importancia de la actitud del padre del proceso de las transiciones
  3. El comportamiento adaptativo funcional es el producto final de una favorable transición
CURRÍCULUM:

Silvia y Beto son la Fundadores y directores del centro de Asesoría Psicológica Integral API. Asesoras en centros de educación especial en el manejo de conducta adaptativa. Consulta particular, experiencia en el trabajo con familias, niños, evaluaciones, manejo de comportamiento y habilidades emocionales. Conferencistas en diversos Congresos. Asesores de escuelas e instituciones en el manejo de conducta adaptativa. Capacitadores de padres y maestros en el manejo de conducta adaptativa.

Teresa Aguilasocho Montoya es mexicana, es madre de cuatro hermosas mujeres, Sofía, Isabel, Cecilia y Mariana, al nacimiento de su hija Cecilia con síndrome de Down inicio una nueva carrera de vida y profesión en el síndrome de Down. Es una persona que ama su trabajo con las personas con síndrome de Down y sus familias. Su formación universitaria es Médico Ginecóloga, Lic. en Psicología, Tanatologa y Preparadora Laboral, Adiestramiento en Neuropsicología en Instituto de Neuropsicología y NeuropedagogÍa Aplicada en INPA España. Ha participado en más de 50 congresos nacionales e internacionales, Ha sido presidenta de 7 congresos internacionales que se desarrollan en la ciudad de Monterrey México, creadora de la campaña de alfabetización de las personas con síndrome de Down en México. Ha escrito un sin fin de artículos y guías relacionados con la sexualidad, ginecología y educación de las personas con síndrome de Down. Ha impartido más de 700 conferencias en el tema de la discapacidad intellectual. Es presidenta de la asociación civil sin fines de lucro Familia, Salud y Desarrollo en Síndrome de Down de Nuevo León. Su trabajo altruista ha sido reconocido en innumerables ocasiones. Actualmente desempeña su ejercicio profesional en el centro Médico Zambrano Hellion Tec Salud, del Sistema Tecnológico de Monterrey, en Monterrey Nuevo León donde da Asesorías Medicas Educativas con Programas de Neurodesarrollo para llevarse a cabo en el ambiente más propicio para la persona con síndrome de Down y en donde los aspectos educativos van de la mano en este proceso. Atiende personas con diagnóstico prenatal y postnatal de alteraciones cromosómicas dando seguimiento psicológico y teratológico.
Silvia Maravilla Àvila and Jose Alberto Alonso García son mexicanos, esposos, padres de Santiago, un hermoso niño de 11 años. Trabajan juntos asesorando a familias en todo lo relacionado con la conducta adaptativa. Psicólogos egresados de la Universidad Autónoma de Nuevo León, con especialidad en Terapia Familiar Sistémica. Silvia cuenta con una certificación en el Programa Integral de Educación de Calidad de Nuevo León. Beto cuenta con una especialidad en Terapia Breve y en Hipnosis Clínica. Juntos dirigen el Centro de Asesoría Psicológica Integral (API) donde asesoran a padres en el manejo de comportamiento y apoyan el desarrollo de habilidades adaptativas y socio emocionales en niños y jóvenes con y sin discapacidad. Imparten cursos, talleres y conferencias en diversas Instituciones dentro y fuera de la República Mexicana. Han sido ponentes en el 1er, 2do, 3ro, 4to, 5to, 6to y 7no, Congresos de Síndrome de Down en la ciudad de Monterrey; así como en el 3er. Congreso Centro Americano de Síndrome de Down de la ciudad de El Salvador 2013 y en la Convención anual del National Down Syndrome Congress 2014.

Pre-conferencia H – Espanol

Pre-Conference I: Affiliates LEAD

TBD


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