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Congress – Day 2

The Second day of the Congress was Thursday 26th July – we had opening plenary sessions from Deborah Fidler and Anthony Holland.

Sessions 

  • Deborah Fidler – Early Development in Down Syndrome: What have we learned

    • Plenary Speaker
    • Deborah is a Professor in the Department of Human Development and Family Studies at Colorado State University. Her research focuses on the childhood development, early intervention and education planning for children with Down’s syndrome. 
    • View the presentation here.  

  • Anthony Holland – Aging as it Effects People with Down’s Syndrome

    • Plenary Speaker
    • Anthony heads the Cambridge Intellectual and Developmental Disabilities Research Group. This multidisciplinary group has undertaken a broad range of research relevant to the needs of people with intellectual disabilities. Most recently their research has focused on Ageing and Dementia in Adults with Down’s syndrome. 
    • View this presentation

  • Ms. Shéri Brynard – Living Your Dreams Without Limitations

    • Adults with Down’s Syndrome Programme
    • Session for adults with Down’s syndrome on what are human rights and why we need them.
    • View this presentation 

  • Mr. Carlos Biggeman– Down Syndrome is not a disability, disability is not to try

    • Adults with Down’s Syndrome Programme
    • Session for adults with Down’s syndrome on what are human rights and why we need them.
    • View the presentation here. 

  • Mr. Brandon Gruber – Pass the Baton … Please!

    • Adults with Down’s Syndrome Programme
    • Session for adults with Down’s syndrome exploring human rights through self-advocates.  
    • View the presentation here. 

  • Dr. Brian Skotko – What your other Children without DS are thinking: Sibling Issues for Parents

    • Practice/Siblings
    • Through a series of interactive exercises, this presentation explored the questions, needs and concerns of children who have a brother or sister with Down’s syndrome. It seeks to give practical answers to commonly raised questions.
    • View the presentation here. 

  • Dr. Sally Shott – Obstructive Sleep Apnea and Ear, Nose and Throat Problems seen in Children and Adults with Down Syndrome

    • Research/Health 
    •  Ear, Nose and Throat doctors play an important role in the care of children and adults with Down syndrome. This presentation will review the ear, nose and throat problems associated with Down syndrome and discuss current research in diagnostic tools.
    • View the presentation here. 

  • Dr. Elizabeth Hill – Sleep and Cognition across the Lifespan of people with Down Syndrome

    • Research/Health 
    •  Sleep problems are common in people with Down’s syndrome. This presentation will review some of the cognitive effects of sleep disorders in people with Down’s syndrome across their lifespan. 
    • View the presentation here. 

  • Dr. Elise Sannar – Developmental Regression in Down’s Syndrome

    • Research/Health 
    • This presentation will provide a review of developmental regression in Down Syndrome, including a look at medical work up, psychopharmacological treatment and behavioural and/or psychological interventions.
    • View the presentation here. 

  • Miss. Katie Carpenter – Book Clubs for Emotional Well Being

    • Practice/Social Inclusion
    • Katie is an apprentice teaching assistant in this presentation she explores what we can gain from books and how book clubs can help friendships and emotional wellbeing.
    • View the presentation here. 

  • Mrs. Tammy Greyling – Passion Driven Employment: I chose what I want to do with my Life

    • Practice/Employment
    • This presentation will share the stories of three adults with Down Syndrome in mainstream employment – choosing and pursuing the jobs they felt passionate about.  
    • View the presentation here. 

  • Dr. Katie Cebula – Emotional Understanding in Children and Young People with Down’s Syndrome: Developing Ability and Influencing Factors

    • Research/Supporting Children & Young Adults  
    • This session featured three presentations which draw together a range of studies assessing emotional understanding in children with Down’s syndrome and investigating the factors which influence and support this. 
    • View the presentation here. 

  • Dr. Colin Dean – Using iPads and Other Tablets to Teach and Access the Progress of Children with Down Syndrome, and other Learning Disabilities including Autism

    • Practice/School Learning  
    • This session will cover using iPads and other tablets to teach and assess the progress of children with Down’s syndrome, particularly in the areas speech, literacy & numeracy as well as a tool to aid communication between home and school.
    • View the presentation here. 

  •  Dr. Petter Gillett – DQ Typing is Effective in Coeliac Disease Screening in Ds in South East Scotland

    • Research/Health 
    • This presentation reviews a recent ‘road test’ of new guidelines for Coeliac testing in under 16s with Down’s syndrome.
    • View the presentation here. 

  •  Mr. Andrew Macintyre – Hanging Tough! Gymnastics and my Life

    • Lived Experience/Health  
    • Andrew started gymnastics when he was 12, now aged 30 he still actively participates in the sport and has had many successes over the years including representing his club at National competitions and at the Special Olympics.
    • View the presentation here. 

  • Mr. Pablo Rodriguez Herrero – The Promotion of Independent Living in Persons with Down’s Syndrome and Intellectual Disability Through the Figure of the Personal Assistant

    • Research/Supporting Adults
    • The personal assistant is a support figure aimed at improving the autonomy and independence of persons with intellectual disability. This presentation looks at research which has been conducted in this area and evaluates the success of this model.
    • View the presentation here. 

  • Mrs. Cora Halder – Me and My Job: How to Succeed?

    • Practice/Employment
    • This educational film is a good example of how to prepare youngsters with Down syndrome for a job. This presentations talks about how the film has been used in Germany and its success for employers as well as potential employees.
    • View the presentation here. 

  • Dr. Anna Esbensen – Wondering about Wandering

    • Practice/Health
    • This workshop addresses common causes of behaviour problems, with specific focus on wandering/elopement/running off in children with Down’s syndrome. It will look at methods for determining the cause for this specific behaviour and preventative methods to reduce the frequency of this behaviour.
    • View the presentation here. 

  • Mr. Sam Quinn – Ageing in Place with Down’s Syndrome and Dementia: An Ethnographic Account in a Small Group Home Setting

    • Research/Supporting Adults  
    • This presentation will look the research into what policies and practices can be used to enable individuals with Down’s syndrome and dementia to remain in a group home setting for as long as possible.
    • View the presentation here. 

  • Mrs. Sivakami Ramaraj – Adult Care Plan for those with Down’s Syndrome Over 40 Years of Age in India

    • Lived Experience/Supporting Adults
    • Drawing from her family’s personal experiences caring for their 45 year old sister with Down’s syndrome, Sivakami looks at what can be done to support families to plan out their care in advance.
    • View the presentation here. 

  • Miss. Claire-May Minett – Understanding Mosaic!

    • Lived Experience/Health  
    • This presentation is about how to explain Mosaic Down’s syndrome in simple terms and how it sections the genes. Claire will draw from her own personal experiences and how it affects her in her day to day life.
    • View the presentation here. 

  • Dr. Gert de Graaf – Quality of Life: the Perspective of Parents, Siblings, and People with Down’s Syndrome

    • Research/Supporting Adults
    • Graaf and his team in the Netherlands replicated research from the US undertaken by Brian Skotko on quality of life to see how the results differ from a different perspective. This presentation reviews the results of this study.
    • View the presentation here. 

  • Dr. Kelly Burgoyne – The Effect of Prompts on Parent and Child Contributions During Shared Book Reading

    • Research/School Learning  
    • This presentation looks at the benefits of shared book reading and looks at the results of a recent study which supports this.Graaf and his team in the Netherlands replicated research from the US undertaken by Brian Skotko on quality of life to see how the results differ from a different perspective. This presentation reviews the results of this study.
    • View the presentation here. 

  • Ms. Caryl Earwaker Lüthy – Becoming Bilingual and Playing Violin: An Intuitive Approach to Developing Speech, Language and Talents

    • Lived Experience/School Learning  
    • Pearl is a 14 year old trilingual teenager who has a passion and talent for playing volin. Together with her mother she shared how they approached learning and their use different technics throughout Pearl’s learning.  
    • View the presentation here. 

  • Dr. Nicole Neil – Critical Aspects of Intervention of Young Children with Down Syndrome

    • Reasearch/Early Learning  
    • This presentation overviews a series of studies manipulating the dose of a behavioural intervention, measuring skill acquisition and learner behaviour during instruction for communication responses in children with Down’s syndrome. 
    • View the presentation here. 

  •  Dr. Ariel Tenenbaum – When a New Baby with Down Syndrome is Born: Neonatal Health Challenges

    • Research/Health
    • This presentation looks at the challenges newborns with Down syndrome may present with and evaluates current studies and practice undertaken in the Jerusalem district. 
    • View the presentation here.  

  • Dr. Brian Chicoine – Promoting Health for and with People with Down Syndrome

    • Research/Health
    • This presentation looks at the ways that adults with Down’s syndrome can be encouraged to participate in their own health promotion, including video, peer-modelling and visual resources.
    • View the presentation here.  

  • Mrs. Olga Litvak – Building our Own Planet

    • Lived Experience/Self-Advocacy/Advocacy
    • Olga presents about her son, 25, who has Down’s syndrome and what lessons they have learnt in supporting him through school and into employment. 
    • View the presentation here. 

  • Vasily Maslenkin -My First Salaries

    • Lived Experience/Self-Advocacy/Advocacy
    • Vasily presents on this journeys into employment as a young adult with Down’s syndrome. 
    • View the presentation here. 

  • Ms. Maura Lynch – Project Search: Employment Solutions in Scotland

    • Practice/Employment
    • Maura from SCLD presented the development of Project Search in Scotland, a programme which supports adults with learning disabilities into employment. 
    • View the presentation here. 

  • Dr. Pauline Arango – Parenting Styles and Attitudes in Families of Children with Down Syndrome: Comparisons between Siblings

    • Research/Supporting Children & Young Adults
    • This presentation focuses on the little researched area of parenting styles and attitudes and the this can have on children with Down’s syndrome.
    • View the presentation here. 

  • Mrs. Penny Green – Supporting Families Where an Individual with DS has Heart Problems

    • Practice/Health
    • This presentation looks at how medical professionals can provide unbiased and relevant support to families. 
    • View the presentation here. 

  • Prof. Christopher Lemons – Research on Enhancing Literacy Outcomes for Children and Adolescents with Down Syndrome: What We Know, What We Need to Know and Where We Should go Next

    • Research/School Learning
    • This presentation explores the research being undertaken into the development of literacy skills in adolescents with Down’s syndrome as well as providing additional tips for parents to support reading development at home. 
    • View the presentation here. 

  • Patrica Jackson, Jo Hughes and Caroline Rendle – The Allied Health Professional (AHP) Care Pathways for 0-3 Year Old Children with Down’s Syndrome and their Families

    • Practice/Health 
    • Patricia, Jo and Caroline present to the postcards developed in association with allied health professionals in Scotland to provide parents with sign-posting information for the early years of their child’s lives. 
    • View the presentation here. 

  • Dr. Adi Finkelstein – I Will Never Be Old: Adults with Down’s Syndrome and their Parent’s Perceptions of Aging and the End of Life

    • Research/Supporting Adults
    • This presentation focuses on the recent research around the challenges adults with Ds and their families face as life expectancy increases and the perception of ageing from the adult with Down’s syndrome.
    • View the presentation here. 

  • Mr. Marcelo Varela – Diagnosis of the Situation of Persons with Ds in Ibero-America: Where to go from here on

    • Practice/Organisation Capacity Building 
    • This presentation reflects on the lack of support and even information on the Down’s syndrome population in Ibero-Ameica and looks at the work currently being undertaken there to change this situation.  
    • View the presentation here. 

  • Ms. Sam Ross – My Job

    • Lived Experience/Employment 
    • One of our Lead Commissioners Sam tells us about her life and her experience in the world of work including how she found a job, what she learnt from her early experiences and how her job now suits her.
    • View the presentation here. 

  • Mrs. Laura Cretu – Acute Regression in Young People with Down Syndrome

    • Research/Health
    • This presentation looks back on a study undertaken at the Jerome Lejeune Institute into regression in adolescent and young adults from 1984 to 2016.
    • View the presentation here. 

  • Ms. Debbie Kelleher – Field of Dreams: Where Dreams Become a Reality

    • Practice/Supporting Adults
    • This presentation is about the Field of Dreams Project for adults with Down’s syndrome in Cork, Ireland. It provides an overview of the successes of the project and looks at how social inclusion can be promoted in other areas.
    • View the presentation here. 

  • Dr. Anna Esbensen – Reliability of Parent Report Mesasures of Behaviour in Children with Down’s Syndrome

    • Research/Research Practice  
    • This presentation focuses on current research into the psychometric properties of commonly used screening tools and the Child Behaviour checklist among children with Down’s syndrome
    • View the presentation here. 

  • Prof. Linda Gilmore – Findings from a Prospective Longitudinal Study of Individuals with Down Syndrome from Early Childhood to Early Adulthood

    • Research/Other
    • Prof. Gilmore presents the findings from a prospective longitudinal study spanning more than 20 years. The research focused in particular on mastery motivation and self-regulation.
    • View the presentation here. 

  • Dr. Elisabetta Monari – Multiple Choice Tests Adapted to Assess the Academic Achievements of a Non-Verbal Adolescent with Down Syndrome and Autism Spectrum Disorder

    • Research/School Learning  
    • This presentation looks at the challenges of testing ability in adolescents with Down’s syndrome who struggle with speech and/or writing.
    • View the presentation here. 

  • Michael Guralnick – The Peer Relationships of Young Children With Down’s Syndrome

    • Plenary Speaker  
    • Michael is a professor of psychology and paediatrics at the the University of Washington. His research has focused on the field of early childhood development and early intervention in children with established developmental delays.
    • View the presentation here. 

  • Mr. Adam Sloan – Stepping Out On My Own: My Journey in Dance, Choreography and Independence

    • Plenary Speaker  
    • Adam Sloan is 26 years old and works as a Contemporary Dance Artist with Indepen-dance, Scotland’s largest inclusive dance company. He tells us a bit about his life and his achievements as well as his plans for the future. 
    • View the presentation here.  

You can view these closing plenary speakers in this video.