Pre-Conference Sessions
The NDSC Pre-Conference Sessions offer in-depth opportunities to explore topics central to understanding Down syndrome. The sessions are held on Friday, July 11th, from 8:00am to 2:30pm and require separate registration. Lunch is on your own.
A) From Infant Babbling to Adult Speech: Helping Children with Down syndrome Develop Understandable Speech
Libby Kumin, Ph.D., C.C.C.-S.L.P., Founder of the Down Syndrome Speech and Language Center for Excellence at Loyola College, Columbia, MD
Why it is often difficult to understand the speech of people with
DS? What can we do to help infants, toddlers, children, adoles-
cents and adults develop speech that is easy to understand?
Dr. Kumin will present a framework for identifying and analyzing
factors that affect speech intelligibility. Through video examples,
she will demonstrate successful techniques and home activities
and will present examples of IFSP and IEP goals that can help
children with DS develop more understandable speech.
B) Growing Up and Growing Older: Mental and Physical Wellness in Adults with Down syndrome
Dennis McGuire, Ph.D., Director of Psychosocial Services, and Brian Chicoine, M.D., Medical Director, both at the Adult Down Syndrome Center, Lutheran General Hospital, Park Ridge, IL
Participants will learn unique strengths and potential
weaknesses of people with DS, with an emphasis on ways
to promote healthy functioning, based on the individuals
seen at the Adult DS Center in Chicago. Issues discussed
will include receptive and expressive language, self talk,
sensitivity to others, obsessive-compulsive tendencies, visual
memory, imagination and minority status of people with DS.
Participants will also learn of key relationship of physical health
to mental health problems and gain a greater understanding
of developmental and environmental stressors, particularly as
teens enter the adult world. Finally, participants will learn to
distinguish mental health conditions from health, aging and
non-reversible dementias and successful treatment strategies
for many mental health conditions.
C) Pathways to Inclusive Post-secondary Education for Youth with Intellectual Disabilities
Debra Hart, Ph.D., Institute for Community Inclusion, University of Massachusetts/Boston
Historically the possibility of an inclusive post-secondary
education for youth with intellectual disabilities has not
been promoted as a viable option. However, options are
emerging in this direction. The benefits and experiences of
a college education are as valuable for youth with DS as for
anyone. Examples of how you get in the door, how to get
accommodations and how to ensure appropriate supports will
be explored. This interactive presentation will present highlights
of a national survey on post-secondary education (PSE) for
youth with intellectual disabilities that was conducted in the
fall of 2007. An overview of an inclusive individual support
model that is being implemented in Massachusetts will also be
provided.
D) Universal Design for Learning: Meaningful Access to the General Curriculum for All Students
Peggy Coyne, Ed.D., Research Scientist, Mindy Johnson, Ed.M., Instructional Designer & Research Associate, CAST, Inc., Wakefield, MA
Madeleine Will, Vice President of Public Policy and Director, Ricki
Sabia, Associate Director of Public Policy, NDSS, Washington, DC
Parents and educators will gain an understanding of Universal
Design for Learning and how this framework for curriculum
design and instruction supports meaningful access to
participation and progress in the general education curriculum
for students with DS. Participants will identify key differences
between a traditional curriculum and one that is universally
designed and will explore what role parents and educators can
play in supporting children through the implementation of UDL
in schools. Key federal and state initiatives will be discussed.
Examples will span pre-K to post-secondary and include parent
and educator insights for discernable next steps.
E) Holding On and Moving Ahead When Life with DS Includes Issues of Autism Spectrum or Disruptive Behavior Disorders
George Capone, M.D., Kennedy Krieger Institute; Assistant Professor of Pediatrics, Johns Hopkins University School of Medicine, NDSC Board Member, Baltimore, MD. Joan Guthrie Medlen, R.D., L.D., Project Director, Creating Solutions, author of The Down Syndrome Nutrition Handbook, Portland, OR. Toni Robinson, B.A., Project Coordinator, Exceptional Children’s Assistance Center, NDSC Board Member, Davidson, NC
When a family’s journey with DS includes travels along the
autistic or behavior disorder spectrum, life can quickly become
and remain difficult. Building capacity in response to chronic
medical and behavioral complexity requires re sources, problem-
solving, a sense of humor and myriad other supports. This
session will identify strategies and practical tools to assist with
managing medical and behavioral challenges in ways likely
to promote greater ease and better days for the entire family.
Note: To aid planning for this session, those registering will be
contacted in advance to identify specific concerns and issues.
F) Creating Whole Lives and Accessing Resources in Ways that Promote Inclusive, Self-determined Lives
Ann Turnbull, Ed.D., Co-Founder, Co-Director, Distinguished Professor and Martha Blue-Banning, Ph.D., Assistant Research Professor, both at the Beach Center on Disability, University of Kansas, Lawrence, KS
This session will focus on the realities of adults with intellectual disabilities striving to achieve the support needed to create a life of participation in and contribution to the community through individual control of funding, supports and services. Issues addressed include creation of “funding packages” through merging of funding streams, asset development, person centered planning, individual budgets/fiscal intermediaries, support brokerage, and inclusive supports/services.
G) Supporting Membership, Participation, and Learning for Students with DS in Inclusive Classrooms
Cheryl M. Jorgensen, Ph.D., Assistant Research Professor and
Project Director, Institute on Disability, University of New Hampshire
Sarah Buckovitch, Child Care Provider, Seacoast Child Development
Clinic, University of New Hampshire, Self-Advocate
Families and professionals who understand that “we are more alike than different” still struggle to fully include students with DS in inclusive classrooms. This workshop will provide a brief rationale for why full membership and participation in general education instruction by the general education teacher in the general education classroom with the support of special education staff are necessary for optimum learning. Participants will learn and practice research-based inclusion strategies and hear from the personal experiences of a self-advocate who was included during her school career. Photo and video examples of students with DS and related developmental disabilities will be shown as part of this interactive and engaging workshop.
H) What Your Other Children Without DS Are Thinking: Sibling Issues
Brian Skotko, M.D., M.P.P., Children’s Hospital Boston & Boston Medical Center, Susan P. Levine, M.A.C.S.W., Social Worker, Family Resource Associates, Shrewsbury, NJ
Through a series of interactive exercises, parents will explore what questions, needs, and concerns are often raised by children who have a brother or sister with DS. Parents and/ or professionals will come away with practical answers to commonly raised questions. This presentation draws upon Brian Skotko and Sue Levine’s publication in American Journal of Medical Genetics.
I) There’s No Place Like Home for Sexuality Education: Strategies for Teaching and Supporting Healthy Sexuality
Terri Couwenhoven, M.S. AASECT Sexuality Educator, Consultant, Milwaukee, WI
Parents are the primary sexuality educators of their children but
research indicates parents often need help and support. This
workshop will help parents explore concepts of healthy sexuality
and understand roles they play in helping their child with DS
move towards a sexually healthy adulthood. Recommendations
for key concepts that can be introduced at home and practical
teaching strategies and resources will be presented.
J) Gross Motor Development in Children with DS: Birth through Walking
Patricia C. Winders, P.T., The Children’s Hospital, Denver, CO
The presentation, led by one of the nation’s leading physical therapists, will provide participants with an overview of gross motor development in children with DS from birth through walking (up to age 5). Participants will understand typical patterns of gross motor development of children with DS and specific strategies and activities for facilitating optimal development. The presentation will include the goal of physical therapy, the factors influencing gross motor development, and a detailed description of the stages through which gross motor development will progress. During this highly practical workshop, unique learning styles of children with DS, the role of temperament and the importance of motivation will all be covered.
K) La Respuesta de una Familia al Síndrome de Down: Una vision integral y actualizada sobre el síndrome de Down y el papel de la familia
Jesús Flórez, M.D., Ph.D., Director de Canal Down 21 en Espana. María Victoria Troncoso, Graduate in Law, Presidenta de la Fundación Síndrome de Down de Cantabria, España. José Carlos Flórez, M.D., Ph.D. de la Clínica de Síndrome de Down para Adoloscentes y Adultos en el Hospital General de Massachusetts y la Srita. Miriam Flórez, joven con síndrome de Down y empleada en un hospital.
La familia Flórez-Troncoso ofrecerá una exposición sencilla y práctica para comprender mejor la realidad del síndrome de Down en sus principales aspectos: su biología, la salud, las características del aprendizaje, y la educación. Al mismo tiempo, se analiza el papel y el valor de la familia de acuerdo
con la experiencia vivida por sus distintos miembros, incluido el testimonio de su hija que cuenta cómo es su vida, sus valores y sus deseos.
L) Parent Group Leadership Seminar
Convened by Sue Joe, NDSC Resource Specialist, Atlanta, GA and Lori McKee, NDSC Board member, Dallas, TX
The 2008 Parent Group Leadership Seminar will cover a range of topics important to your organization. Attend this session if you have questions, ideas, concerns, or successes that you’d like to share with other organizational leaders from around the country. The agenda for this session will be designed by the participants in a creative, inclusive and energizing way. Important: Parent organizations that are current in their affiliate dues ($50 per year) may send two representatives to this session at no charge. Do not register on this form. A separate mailing with registration information and details about the seminar will be sent to your affiliate mailbox.