Ninth Annual Trisomy 21 Symposium

Ninth Annual Trisomy 21 Symposium

Saturday, March 16, 2013

Sponsored by the Trisomy 21 Program at

The Children’s Hospital of Philadelphia

www.chop.edu/cme

Trisomy 21 is the most frequently occurring chromosomal abnormality, found once every

800 to 1,000 live births. However, both pediatric and adult clinical care continues to

present significant and unique challenges.

Children with trisomy 21 are at higher risk for congenital heart disease, gastrointestinal abnormalities, endocrinologic disorders, epilepsy, musculoskeletal issues that affect motor abilities, hearing loss, speech apraxia, sleep disorders, feeding disorders, and developmental disabilities, including learning disabilities, mental retardation and autism. Deficits in any of these areas can adversely affect the child’s development and adaptive behavior.

This one-day symposium will provide parents and healthcare professionals with up-to-date clinical information, therapeutic approaches and current research being conducted in the field of trisomy 21.

Presentation Summaries:

Dental Management of the Patient with Down Syndrome (Trisomy 21) Angela Stout, D.M.D., M.P.H. - This presentation will discuss various dental characteristics and

anomalies that exist with patients who have Down syndrome and will review tips for the parent and caregiver to maintain good oral health for their child/patient. Several treatment options

and behavior management techniques will be offered to guide and assist the parent/caregiver to get their child/patient through dental examinations and treatment.

Promoting Health and Mental Wellbeing in Individuals with Down Syndrome: Lessons Learned from the Adult Down Syndrome Center of Advocate Lutheran General Hospital Brian Chicoine, M.D. - Dennis McGuire, Ph.D.Drs. Chicoine and McGuire will discuss findings from a multidisciplinary clinic serving the health and psychosocial

needs of over 5,000 teens and adults with Down syndrome in suburban Chicago. They will discuss the interaction of physical and mental health conditions and discuss ways to reduce the risk of mental health/behavioral conditions. They will also discuss health promotion strategies and behavioral characteristics that are adaptive.

Monica Walters Martinez and David Martinez Self-advocates and Stars of the HBO Documentary, Monica & David Moderator: Ali Codina - Monica & David is a documentary that explores the marriage of two adults with Down syndrome and the family that strives to support their needs. Monica and David are blissfully in love and want what other adults have — an independent life. While Monica and David are capable beyond expectations, their parents, aware of mainstream rejection of adults with intellectual disabilities, have trouble letting go.

The First Year of Life from an OT/PT Perspective

Heather Ruthrauff, M.S., O.T.R./L., C.B.I.S. Jaclyn Buechele, P.T., D.P.T. TARGET: Young Children Learn about proper positioning, equipment and the fundamentals of development; make sure that your child is given the proper building blocks to continue to learn and develop throughout the years.

Increasing Communication to Decrease Frustration in School-age Children with Trisomy 21 Susan L. Biedermann, M.A., C.C.C.-S.L.P. Marianne L. DeCicco, M.S., C.C.C.-S.L.P. TARGET: School-aged Children Specific strategies for caregivers to increase communication in school-aged children with trisomy 21, addressing areas such as increasing functional communication, expanding language, improving clarity of speech, development of grammar, augmenting social skills and managing behavior.

Turning 18: Guardianship, Entitlements and the Waitlists Hinkle, Fingles & Prior, Attorneys at Law TARGET: Adolescents At age 18 (or age 21 in some states) a child is viewed as an adult, regardless of disability and therefore is legally empowered to make decisions. Parents will be faced with decisions about guardianship and surrogate decision-making. In addition, the service delivery system changes dramatically as children exit the school system. Often, there are waiting lists for services. And federal entitlement programs, such as SSI and Medicaid can be confusing and hard to access. Learn what to expect from the service system as a child transitions to adulthood and how to avoid common problems.

Promoting Strengths and Creative Potential in Individuals with Down Syndrome Dennis McGuire, Ph.D. TARGET: Adults Individuals with Down syndrome of all ages have a host of unique and interesting behavioral characteristics such as self talk, routines or “grooves,” visual (photographic-like) memory, emotional radar and sensitivity to others. These characteristics may be very beneficial but they may also be unproductive or too easily mistaken as mental illness by the uninformed. This workshop will clarify some of the productive and harmless behavior from bona fide mental health problems and discuss ways and means to promote best possible use and understanding of these characteristics.

Developing Communication and Play Skills in Young Children with Down Syndrome Kristin E. Greene, M.S., C.C.C.-S.L.P. Stephanie Metz, M.A., C.C.C.-S.L.P. TARGET: Young Children This workshop will give caregivers an understanding of development as it relates to speech, language and play with functional ideas to promote these skills at home.

IEP Considerations for Students with Challenging Behaviors Hinkle, Fingles & Prior, Attorneys at Law TARGET: School-aged Children Many students with disabilities have behaviors that interfere with learning and social relationships. Sometimes, behaviors can be dangerous to the child or to others, and left untreated, may put the child at increased risk. Learn about proactive strategies to address the needs of students with disabilities who also have behavioral difficulties, including IEP accommodations, social skills teaching and how to limit exposure to school discipline policies. Participants will also learn what to do if a child faces disciplinary responses to behaviors that may be due to his or her disability.

Promoting Mental Wellness in Teens and Adults with Down Syndrome Brian Chicoine, M.D. TARGET: Adolescents/Adults This discussion will focus on more specific information about physical health conditions in people with Down syndrome and how those conditions contribute to mental and behavioral changes. In addition, treatment of physical and mental health conditions will be addressed. Finally, participants will learn to distinguish mental health from aging issues and non-reversible dementias and of successful treatment strategies when mental health problems are diagnosed.

Promoting Social Skills and Friendships at Home and in the Community Nadavya B. Stollon, B.A. TARGET: Adolescents It is important for youth to develop appropriate social skills in order to become comfortable interacting with people who they come across in their daily lives, and to prepare for obtaining employment or volunteer experiences during and after high school. This session will introduce strategies that parents and caregivers can use to teach youth to relate to others successfully in a variety of settings. Finding opportunities for youth to create and maintain friendships outside of school will also be discussed.

Partnering with Your Child’s Healthcare Providers

Family Consultants The Children’s Hospital of Philadelphia TARGET: Young Children Useful tips and strategies for parents and caregivers on partnering with their child’s care team. Parents and caregivers will learn effective strategies that will enable them to maintain balanced and effective communication with their child’s care team.

Using Visual Supports for Communication and Behavior: Why and How Carrie L. Leonhart, M.S., C.C.C.-S.L.P. TARGET: School-aged Children Visual supports can be helpful in increasing independence for students with disabilities when they are at school, home, in the community and more! These low-tech, easy-to-make tools can also support communication and behavior. This session will describe what visual supports are, why they work and how to make/use your own.

Personal and Community Safety: Perception vs. Reality Beverly L. Frantz, Ph.D. TARGET: Adolescents Explore safety from a personal and community perspective. From street “smarts” to cell phones and the Internet, to understanding the difference between friendly and friendship, this session will address the importance of understanding the difference between the perception and reality of “being safe.”

When Autism Is Suspected in Teens and Adults with Down Syndrome Dennis McGuire, Ph.D. TARGET: Adolescents/Adults There is a great deal of overlap in the descriptions and behavior of autism and Down syndrome, and this has created a great deal of confusion, particularly for parents of teens and adults. Based on findings from the Adult Down Syndrome Center, this presentation will clarify the similarities in health, sensory and (ironically) in what are often called “autistic features” and the differences we have found in social relatedness. Perhaps more importantly, we will look at the often intense and overwhelming stressors and challenges facing teens and adults with co-occurring DS and autism, beginning in puberty and continuing into adult life.