Abstracts of 2nd African Conference on Down Syndrome and Intellectual Disabilities 2005

PLENARY

HUMAN RIGHTS Biography Jody Kollapen – Chairperson of the South African Human Rights Commission Mr Jody Kollapen is the Chairperson of the South African Human Rights Commission, a constitutional body set up in terms of the South African Constitution to protect and promote human rights. A lawyer by training he practiced law in Pretoria, South Africa from 1981 to 1992 focusing on public interest law. He joined Lawyers for Human Rights, human rights NGO in 1992 and served, as it’s National Director from 1994 until 1995. He was appointed to the Human Rights Commission in 1996 and was elected chair of the Commission in October 2002. His areas of interest include human rights within the administration of justice, equality and the advancement of socio-economic human rights. He also serves on the boards of various national and international human rights bodies and was part of the panel appointed to interview and shortlist members of the Trust and Reconciliation Commission. Jody is married and has 3 children. Abstract Human Rights and Equality are Invisible and can be Claimed by all as a Birthright One of the most defining features of South Africa’s transition to democracy was the commitment to creation of a just and equal society. The Constitution sought to give effect to this by ensuring that equality, both as a value and as a legal right, featured prominently in the architecture of Employment Equity Act and the Equity Act as well as affirmative action measures have trued to advance the quest for equality. Some 12 years later we have made quite significant progress in many areas, but other formidable challenges still remain. The position of people with disabilities raised serious questions about our society’s commitment to equality. Under representation of people with disabilities, structural and institutional discrimination and attitude, assumptions and myths still stand in the way of ensuring that people with disabilities are able to claim the full and equal protection of the law. More work is required in a variety of areas to deal with this problem. The use of the law and the Courts, the development of information, advocacy and lobbying campaigns, the use of the media as a means of education and awareness, are just some of the interventions that may need greater focus. There are no degrees of equality and unless we are able to give effect to the Constitutional imperative to “develop the full potential of ach person”. then the attainment of equality in our society remains unfulfilled.

Biography Dr Daniel Weeks – Chair, Department of Psychology- Simon Fraser University, Canada

Daniel J. Weeks is the Chair of the Department of Psychology at the Simon Fraser University where he operates the Psychomotor Behaviour Laboratory. He received a B.A. in psychology from the University of Windsor, an M.Sc. in human biodynamics from McMaster and a Ph.D. in psychology specializing in cognition and motor performance from Auburn University. Dr. Weeks and colleagues have an ongoing programme of research examining the impact of cerebral specialization on the health and behaviour of both individuals with Down syndrome and those with other intellectual challenges. He is the author of more than 100 peer-reviewed articles as well as numerous chapters and 2 books. Dr Weeks is past recipient of the Distinguished Scholar Award from the North American Society for the Psychology of Sport and Physical Activity and in 2003 he received he Distinguished Research Service Award from the Down Syndrome Research Foundation.

Abstract The Legacy of John Langdon Down The present paper will present an overview of the life and contributions of John Langdon Down. Particular emphasis will be placed on this tremendous insights into the syndrome that bears his name and into intellectual disabilities more generally. Despite the technological limitations to research characteristic of the 19th century, J.L. Down was a scientist in the truest sense, and a pioneer in recognizing the valuable contributions that can be made to families and society by persons with Down syndrome and intellectual disability.

EDUCATION

Biography Dr Francis Mhlawumbe Nzama – Acting Deputy Director-General, General Education – Department of Education. Former Rector of Mpumalanga College of Education; former Director of Teacher Development in KwaZulu-Natal; Chief director of Institutional and Human Resource Development at National Department of Education from 1 March 2005 till now; Acting Deputy Director-General Education

Abstract An Educational Vision for Learners with Intellectual Disability The South African Policy on Inclusive Education is set out in Education White Paper 6. This policy is unambiguous about the educational opportunities that must incrementally become available to all children who experience barriers to learning and development, including learner with disabilities. It furthermore emphasizes that the inclusion of learners with intellectual disability into local neighbourhood schools is the easiest to facilitate as the support that they need consists mostly of curriculum adaptation. The Department of Education is currently field testing Guidelines for Inclusive Learning Programmes and a National Strategy on Screening, Identification, Assessment and Support in selected districts throughout the country. Thousands of teachers of both special and full-service schools and district-based Support teams are being trained in implementing these strategies so as to ensure that all learners can effectively participate in the teaching and learning process. We are also in a process of strengthening special schools so that they can provide quality education and in future also serve as resource centres. True inclusion can however never materialise without comprehensive school change that includes the development of inclusive cultures, policies and practices. Ultimately inclusion is about the kind of society that we want – a society which welcomes all and celebrates diversity.

Biography Lillian Mariga – NFU Zimbabwe – Regional Consultant. Lilian is the mother of 3 children. She originally trained as a nurse, and then went on to work in the disability field, starting off with working in different areas of community based rehabilitation. She particularly enjoys community work with a special interest in inclusive education. Currently works with advocacy groups in countries supported by the NFU – Aspiring for changes in all national policies.

Abstract Practical Perspectives to Inclusive Education in 3 developing countries Lilian Mariga’s presentation will show how change in policies can include people with disabilities in developing countries like, Lesotho, Tanzania and Zanzibar and how we can learn from them.

Biography Hayley Rehbock – Down Syndrome South Africa Self Advocate Hayley was born with Down syndrome on 18th October 1974 in Cape Town. She was placed in a mainstream school at the age of 8 and then moved to Bel Porto School – a special school for children with learning disabilities. She excelled in sports and her main interests were netball, swimming, running, shot-put and long jump. Hayley was part of a Pilot Project for inclusive employment and worked at Momentum Life doing administration work for 12 months. She currently works a the Red Cross Hospital as a volunteer on Tuesdays and for the Down Syndrome Support Cape Association on Fridays. She also volunteers once a week at SARDA (South African Riding for the Disabled). Hayley is a board member of Down Syndrome South Africa (DSSA) and has attended many conferences as a delegate of DSSA and delivered many speeches in this capacity. Hayley is an ardent fan of SA rugby and Cricket. She watches the matches on TV only if she cannot be at the stadium. She follows all the swimming competitions on TV. She paints ceramic pottery which she then sells. She loves scrap booking, going to the gym and is a big screen movie addict. She belongs to various social clubs and has a very hectic social programme.

Abstract Hayley will be talking about her life in general.

QUALITY OF LIFE

Biography Christy Lynch – CEO of KARE in Ireland Christy Lynch is Chief Executive Officer of KARE – County Kildare Association of Parents & Friends of Handicapped People in Newbridge, Co. Kildare. KARE provides a comprehensive range of services to approximately 400 individuals with intellectual disability and their families. Christy has significant experience in the development of Inclusive Employment Options, specifically Supported Employment for people with disabilities. He was worked extensively throughout the EU Member States, North & South American and South Africa. He founded the IASE – Irish Association for Supported Employment and was a founder member and first president of the EUSE – European Union of Supported Employment.



Abstract Get a Life with Quality This presentation will give an overview of how service providers, people with intellectual disabilities and families can work together in a collaborative way, in order to ensure that children and adults with intellectual disabilities and their families have a quality life experience. The presenter will give an overview of a service in Ireland and address issues such as Early Interventions, Education, Employment, Respite Care, Residential Service Options and Friendship. This session will focus on inclusive options to demonstrate how current best practice from an inclusion perspective results in better outcomes in the quality of life for people with intellectual disabilities and their families.



Biography Dan Schimmell – LEV

Dan works for LEV, a Danish organisation based in Copenhagen in Denmark for people with Developmental Delays (Intellectual Disabilities), as the National Policy Advisor. He is responsible for the self advocacy programmes as well as the family training programmes. Dan has an older brother with an Intellectual Disability.

Abstract Quality of Life The concept of Quality of Life is a strange, abstract one, as the word in itself does not say much. Quality of life – you can pose yourself the question ‘for whom?’ and ‘about what?’. Which parametres are included, when evaluating the concept? In order to give you my interpretation of the concept of quality of life I have found it necessary to make some delimitations and to create some frames as regards the understanding – other wise it dos make sense for me. Quality of life is a subjective description of a condition or the wish for a certain condition in which the individual is given possibilities of performing a certain number of actions.

Biography Ephraim Mohlakane – DSSA Self Advocate and Special Olympics Global Messenger Chairperson Ephraim was born on 15th October 1976 in Johannesburg, Katlehong. He never knew his father, who abandoned them when he was little. His mother and little brother are also intellectually disabled. He was raised by his mother and granny. Ephraim has taken the responsibility to support his mother, brother, sister and granny with his disability grant and wages from the Hamlet workshop, paying for his brother’s school fees as well as paying a contractor for fixing the roof at his house. His granny has since passed away. Ephraim has recently been permanently employed in the open labour market at St Benedict’s College in the primary school as a Sports Coach. He loves his new job and the children and staff have accepted him and welcomed him. More importantly he is being paid the current rate for the job. In June this year Ephraim was appointed as the Special Olympics Global Messengers Chairperson after serving a 2 year term as a Global Messenger. During this term he opened the Special Olympics Games along with Nelson Mandela in Ireland in 2003. Ephraim serves on the Board of Down Syndrome South Africa as a Self Advocate and has attended many conferences in this capacity.

Abstract Working Towards a Better Quality of Life Ephraim’s will be talking about his life and the quality he has strived for.

FAMILY LIFE

Biography Vanessa dos Santos – DSSA Chairperson Vanessa is the mother of 3 boys, her youngest Steven was born 10 years ago and has Down syndrome. He was later diagnosed as having Cerebral Palsy (due to a difficult and traumatic birth). Since then, she has been involved in the Down Syndrome Association of Gauteng and then Down Syndrome South Africa. She was the Vice-Chairperson 2001-2003 and is currently the National Chairperson 2003-2005. She is also an executive board member of Down Syndrome International and the South African Federal Council on Disability. She has participated in many international conferences and has a particular passion in striving for the rights of individuals with Intellectual Disabilities and their families.

Abstract Having a child with multi disabilities is a challenge which the entire family has to face, and yet in Vanessa’s case they have embraced this challenge with positive results. How people perceive a situation can often have a huge impact on whether or not the child with a disability is seen as full member of the family or not. In many instances the strain of a baby with Down syndrome or Intellectual disability born into a family can cause the family to break up, often with the mother being blamed and in some cultures it is seen as a curse on the family.

Biography Dr Balbir Singh – President of Down Syndrome International Dr Balbir Singh is the President of Down Syndrome International, advisor and founding Chairman of the Down Syndrome Association of Singapore and a member of the Asia-Pacific Down Syndrome Federation. H has been an active and effective advocate for persons with Down syndrome and the Intellectually challenged in Singapore. His strong belief in them has led to their greater empowerment. Balbir has led & driven many pioneering programmes and services, viz the Parent Support Group, Early Intervention, Integrated Pres-school programme and Adult Education too. He has helped raise awareness of Down syndrome, especially with the successful adoption of DSA by a major TV station and a newspaper in Singapore. His practice of responsible governance, organizational competence and aptitude of assembling and motivating a committed team, resulted in the successful organizing and hosting the 8th World Down Syndrome Congress in 2004 and the Asia-Pacific Down Syndrome Congress in 1995. He has contributed many articles to various newsletters, magazines and journals, and made presentations; especially sharing his families personal experiences. Balbir has had the privilege of total support from his extended family especially his wife and 2 daughters (one of whom has Down syndrome). He has been a sound proponent of the Family Quality of Life model.

Abstract Balbir’s presentation will focus on the Role of the family, Empowerment and knowledge, Resource and support, Attitude and acceptance, Wellbeing and needs, Partnership and professionals, the Family as role models, Prioritizing and making time and transitions.

Biography Jaspreet Kaur Sekhon Jaspreet is a teacher’s aide at Maris Stella Kindergarden (since January 1999) She is an advocate and motivational speaker for Down Syndrome and Disability awareness. She has a certificate of Professional Development in early childhood development, English (WISE1), Mathematics (WISW2) Certificates, Pre-Intermediate English Course at the British Council and various I.T. literacy courses and enrichment programmes. Her achievements and awards that she has received are the: Honours & Pride Award – for outstanding individual with Down syndrome, Ambassador of Down syndrome Association (Singapore 2004-2005), ambassador of Association of People with Special Needs – 1998, Represented DSA at swimming competition by Special Olympics and National Swimming Championships for the disabled – with medal winning performances. She has been interviewed and quoted by the media over the past 10 years and delivered presentations and several conferences. She is an active member of various organizations including; Association for Early Childhood Education, Down Syndrome International, Disabled Peoples’ Association, Down Syndrome Association (Singapore) and the Association for People with Special Needs.

Abstract Jaspreet will be speaking on the importance that family plays in life, and how people with disabilities have a lot to offer to and receive from their families. Families must be role models, because without setting a good example, people with an intellectual disability might not achieve their full potential, and having a good family quality of life. Her presentation will cover Inclusion within Family, Caring and Sharing, Communication, Bonding and Support, Give and Take, Appropriate Behaviour, Focus on the Positives, Adulthood and Empowerment & Self Advocacy.

Biography Laun Swanepoel – Self Advocate DSA Tshwane Luan is 16 year old boy with Down syndrome and attends a mainstream school, Eldoraigne High School. He started school in grade 1 at the age of 6 and has progressed with his peers and is now in Grade 8. He loves school and has a lot a friends. He won a silver medal in the Northern Gauteng Expo for young scientist and his topic was on Down syndrome. In primary school he won the Mr Personality title in a school competition. The appeared in the “Bejond the Class Room” programme on SABC TV1.

Abstract Luan will be talking about his “mainstream schooling” experience

BREAKAWAYS

HUMAN RIGHTS

Biography Mmuso Barbara Moneymore – Department of Health – Human Genetics and Women Mrs Barbara Monyemore obtained her degree, Bachelor of Arts in Nursing Science majoring in Community Health and Nursing Education, from the University of South Africa (UNISA) in 1995. She continued her post graduate degrees with UNISA and obtained Honours Degree in 1996, and Masters Degree in 2003. She is currently doing her Doctoral Degree and is looking into supporting strategies for persons with birth/genetic disorders. She has been in the field of Human Genetics for sixteen years (1989-2005), and was Chairperson of Down Syndrome South Africa from 1996 to 1998. She is currently Deputy Director: Human Genetics at National Department of Health, Pretoria, SA.

Abstract Integration of children with disabilities/genetic disorders into the community Children with disabilities/genetic disorders have a right to access relevant services, and to grow and develop within the community. The community nurse is of paramount importance to integrate children with disabilities/genetic disorders into the community. It was therefore important to determine what role the community nurses should play in this process, and whether they are competent to integrate children with disabilities into the community. This research also investigated the barriers which affect the integration process, and highlighted the benefits of integrating children with disabilities into the community. The social and physical environment in the community impacts significantly on the ability of children with disabilities to fully participate in all spheres of life. Social integration involves the full and active participation of children with disabilities in all the environments, including the family and community environments. The Constitution of South Africa Act, 108 of 1996 as the supreme law in South Africa, makes it imperative that the rights of children with disabilities be recognised. Section 9 (3) of the Bill of Rights of the Constitution prohibits discrimination on the basis of age and disability (South Africa 1996:7, 13). The findings of this research reveal that barriers related to the family, community and health system are challenges to the integration process. The recommendations of this research deal with addressing these barriers. The findings further reveal that the community nurse is instrumental in integrating children with disabilities into the community.

Biography Sharon Bard - Employability Sharon Bard has a Batchelor of Arts Degree and been involved in the Disability industry for 16 years both in Australia and South Africa. F She has worked in many areas within the disability sector including sport and recreation, training, independent living and employment. Sharon is currently the Operations Manager of Employability, an organisation that offers a supported employment model to people with intellectual disability. Sharon’s current position involves consulting within the corporate sector around disability issues. The solutions and service delivery offered include; Placement, Job Coaching, Life skills training and both Awareness and Sensitization and Diversity Management workshops.

Abstract Disability in the Workplace: A Human Rights Issue It is our objective to empower people with an intellectual disability, their families and professionals with knowledge that surrounds the current South African legislation around disability in the workplace. We will make reference to The Constitution, the Employment Equity Act and two supporting documents; the Code of Good Practice and the Technical Assistance Guidelines. This brief explanation of the law will clearly define the relationship between people with a disability and the current workplace. It will highlight the importance of pursuing the right to work as a human rights issue based on law and good business practice as opposed to charity. We will discuss the constitution in terms of how it represents intellectual disability and explore the difference between formal and substantiative equality. Legal definition of what constitutes a disability. How is intellectual disability defined in the Employment Equity Act. What message is the Open Labour Market getting in terms of intellectual disability? In conclusion we will demonstrate the workable relationship between Supported Employment and the Employment Equity Act. We will provide two practical examples of the implementation of the process to highlight the challenges, logistics and potential of the model.

Biography Dr Sadika A Al-Awadi – MD Director, Kuwait Medical Gentics Centre Dr Sadika A Al Awadi qualifications are: 1994 FRCP, Edinburgh, 1989 MD Human Genetics, National University of Ireland, 1972 DCH, Ain Shams University, Egypt and 1969 MBBCH, Ain Shams University, Egypt. Dr Al Awadi is currently the genetic consultant to various hospitals in Kuwait and includes identification of the genetic problems and genetic counselling, identification and registration of congenital malformations in Kuwait and population genetic activities and planning strategies includes building up basic figures and prevention of the different common genetic disorders and training activities for junior doctors joining Kuwait Medical genetics centre and training of peadiatricians and neonatologists in genetics

Abstract Human Rights and Down Syndrome in Kuwaiti Law Down syndrome is the most common aneuploidy occurring as a sporadic event with a frequency of 1:600 to 800 live births. In Kuwait, its frequency is a little bit higher. Now, we have 2000 Down syndrome individuals with different age group ranged from 0 - 45 years old. In 1996, the Kuwait government put all handicapped individuals under the umbrella of law No.49 for the year 1996 concerning the different handicapped persons inclusive Down syndrome. This law provides to all handicapped persons Medical services, Educational services, Sport age, rehabilitation, housing, transportation and work. Herein, we are presenting the scope of this law and how it is of much help to those individuals with Down syndrome.

Biography Julie Lampret – Genetic Counsellor – Department of Human Genetics,NHLS - University of the Witwatersrand Julie Lampret is currently doing her internship as a Genetic Counsellor at the National Health Laboratory Service in Johannesburg. She completed her BSc in genetics at Wits University and subsequently completed a certificate course through the Social Work Department of UNISA while studying a BA (Theology). In 2002, Julie received her Honours in Human Genetics and went on to study her MSc (Genetic Counselling). She is currently completing her research for her MSc on Down syndrome.

Abstract The reproductive choices made by South African Mothers who have children with Down Syndrome Down syndrome is the commonest cause of congenital developmental disability in industrialized countries, where it occurs in approximately 1.4 per 1000 live births. In South Africa, the birth prevalence of Down syndrome was documented as 1.8 and 2.09 per 1000 live births in urban and rural populations, respectively. The physical, psychosocial and emotional burden of Down syndrome on affected families is significant. The aim of this study was to determine the reproductive choices of women with a child with Down syndrome, aged 1 year or older. The survey was conducted with a structured questionnaire on fifty women; 36 African, 4 Asian and 10 Caucasian. The questionnaire assessed the mothers’ knowledge of Down syndrome prior to diagnosis, what counselling was received and how this knowledge was utilised. Information was also obtained on the mothers’ use of family planning, the knowledge and use of prenatal diagnosis, and what decisions would be made in future pregnancies. The information from this study can be used to improve the understanding of how women and their families cope with their Down syndrome children and give insight for the provision of more effective and comprehensive genetic counselling.

Biography Maweza July Nkutha – Disabled Children’s Action Group Parent of a disabled child. Provincial Chairperson of DICAG in Mpumalanga Province and member of the National Council of DICAG. Member of the Disability Task Team within the National Children’s Bill Working Group. Student at UCT studying the Masters in Disability Studies

Abstract Children’s Bill Over recent years, the Department of Social Development has been involved in a process of developing appropriate legislation for children. The new Children’s Bill is to replace the Child Care Act of 1983. The development of the Bill has been accompanied by a number of key processes within government, as well as by child rights organisaiton in South Africa. The presentation will sketch the process to date, including the activities of the Children’s Bill Working Group. It will highlight the work and the impact of the Disability Talk Team, in advocating and lobbying specifically for the inclusion of provisions in the Children’s Bill for Children with Disabilities. What legislative protection is there to b for disabled children? What does the Bill say about services to which children with disabilities are entitled? How can I or my organisaiton be involved in the process of reviewing and giving input into the Bill? This presentation will address these questions, as well as providing specific ideas and opportunities for parents, children with disabilities and other to be involved in other processes around the Children’s Bill.

Biography Colette Coetzee – University of Stellenbosch Colette works for the Department of Education in the Western Cape for the last 8 years. Before that a Learning Support Teacher with the same department.

Abstract A Training Programme for Detectives Interviewing Young Victims of Sexual Abuse: Implications for Children with Intellectual Disability There is deep concern nationally and internationally about the increasing number of sexual offences against children. South Africa is one of the countries with a very high incidence of child sexual abuse. Child sexual abuse is very traumatic for most children: research reveals that the negative psychological impact of child sexual abuse persists over time and even into adulthood. Disclosure of sexual abuse is often very traumatic for the victim and the response of the investigating officer is crucial as inappropriate responses to disclosure can inhibit the childs healing process, jeopardize the subsequent legal proceedings and expose the child to secondary traumatisation. This paper explores the training needs of investigating officers of the South African Police Services with regard to interviewing young victims of sexual abuse. The rationale would be that if investigating officers were adequately trained in interviewing sexually abused children, then the trauma will be lessened for the child victim and their families. For the purpose of this study, a qualitative study was conducted. Two groups of participants were used in the study: Investigating officers working for the SA Police Service and social workers working for various non-governmental organizations.

EDUCATION

Biography Dr Gillian Lloyd Dr Gillian Lloyd has a wide range of educational experience, ranging from classroom experience at the pre-school level through primary school, high school and tertiary levels. She has taught both able-bodied and disabled children in mainstream schools, special schools and inclusive situations. She works in both formal teaching contexts training teachers, parents and others involved in the care of children with disabilities. She has created models of inclusive education for the early years of schooling as well as programmes to facilitate expressed needs by the communities within which she works.

Abstract Please help me find the right words – Strategies to Encourage Expressive Language Development in Young Children Too many young children in South African pre-schools lack expressive language for a variety of reasons. This is worrying, as they have to find a niche within the competitive, relatively pressurized atmosphere of modern society. Studies indicate that children who have language problems during the pre-school years are at increased risk of having reading problems, intellectual difficulties and socio-emotional/behaviour problems after starting school. South African research has revealed that many teachers are reluctant to intervene in such cases and it is often difficult for communities to access speech therapists easily. Solutions to this problem seem to lie within a network of related factors that often differ from child to child. This paper examines these factors and offers suggestions for both teachers and parents of young children in an attempt to provide supportive guidance for a problem that can have serious implications.

Dr Daniel Weeks – Department Chair Psychology - Simon Fraser University, Canada

Abstract Aspect of Perception, Cognition and Action in Down Syndrome The past 30 years has seen increasing technological sophistication directed toward understanding brain function and how it is related to the behaviour of individuals. However, the challenge of brain research for parents and educators has little to do with the intricacies of brain functions. Instead it is grasping the vastness, complexity, and power of the human brain. Each brain is unique. Though all human brains have the same systems including our senses and basic emotions, they are integrated differently. In fact, learning changes the structure of the brain; the more one learns, the more unique one becomes. In this presentation I will discuss the current status of work from our laboratories aimed at developing a model of cerebral lateralization for DS that has as its primary feature the dissociation of the functional subsystems sub serving speech perception and the organization of complex movement. Our specific research examines the potential impact on perceptual, cognitive and motoric processes. The long term goal of our work is to establish methods for the integration of measures of cortical function with behavioural neuropsychology to assess information processing characteristics of individuals with Down syndrome. This is an important step toward realizing the practical goal of our research: to establish methods, procedures and guidelines for the development of instructional strategies that may circumvent, or at least reduce, the impact of some of the specific information processing difficulties associated with Down syndrome.

Biography Annamarie Wium – Kommunika, University of South Africa Annamarie worked with a group of children with Down syndrome in a pre-school programme where she introduced the Bliss programme to acquire language and early reading skills. She left the school in 1990 to become part of the initiative to develop the centre for Augmentative and Alternative Communication (CAAC). For the past three years, she has been involved in Kommunika, which is a Centre for Early Intervention in Communication Pathology within the Dept. Communication Pathology, University of Pretoria. They strive to support parents and educators of young children in the facilitation of Listening and Language for Learning.

Abstract Preparing Young Children with Down Syndrome to become Ready to Learn an Additional Language The South African situation is unique in having 11 official languages and the majority of children are being educated in a language other than their first language. Many parents prefer to have their children educated in schools where English is the Language of Learning and Teaching (LoLT). Children come from a wide range of language backgrounds. Some have not been exposed to English before they start with school (apart from radio and TV) and not all have been exposed to early literacy experiences, which is a prerequisite for learning, These factors have considerable implications for children whose first language in itself is delayed. Inclusive education for children with Down syndrome results in many becoming functionally literate when they enter school. On entering school, therefore, some children with DS not only have to acquire a second language, but also have to learn to read and write in that language. Learning to read has a significant impact on language learning and on the development of auditory and visual memory skills. Being able to read and write will support the language development in both the L1 as well as the additional language (LoLT). Successful literacy intervention with children with DS has been achieved in the past by implementing whole word sight vocabulary with children as young as three years of age. However, children are not able to generate new words or read unfamiliar words unless they have learnt to segment and blend sounds or syllables. An integrated approach is advised. Strategies such as making use of the whole language approach and the teaching of phonological awareness will also facilitate language and literacy development.

Biography Busi Mongala, Pre School Principal, Soweto Busi Mongala has worked for ASHA for 25 years, first at Khayne Bridgeman Pre-school, and as principal at Tshiriletso Pre-school since 1992. Busi works tirelessly for young children and is totally dedicated to their early learning needs. Her implementation of the “Clever Play” programme in the 1990’s was so effective, hr children demonstrated the method at training courses. Busi also did an ECD audit of Soweto in 2000 for an international organisation, and was a speaker at the 2002 ECD Conference in Durban. She was elected to the ASHA Management Committee, and served as the marketing co-ordinator of ASHA’s Jozi FM radio programmes for 2001-2004. Busi’s interest in ASHA’s Inclusion Programme drives her in its implementation and promotion. She has been trained in assessment and other aspects of the program and has a personal interest through her dyslexic son. She says, “If I had known what to do, I would have been able to help my child much more. I wouldn’t like to see any child suffering. We have a responsibility now to help young children with barriers to learning as soon as possible.”

Abstract What do we Need to Know? Identifying and Helping Children in Need of Early Intervention I am the mother of a child with special needs. I am also the principal of a large pre-school in Soweto where I see many young children with learning delays and developmental difficulties. I work with many different parents. I know how they feel because of my own experience. My school was part of a research project where the teachers were taught how to identify gaps in learning and then stimulate appropriate development with specific activities and approaches. We learned that this must be done as soon as possible so that the child’s progress is not too badly affected. My paper will describe some points and give some ideas for parents and teachers so that the problems experienced by children are not ignored or neglected. It is very important that everyone understands important it is to intervene as early as possible when a child is struggling to learn. We need to spread the word, talk about this and educate others in the community.

Biography Annaih Mupawose, Pathology, University of the Witwatersrand Annaih Mupawose has a Bsc Honors in Psychology (University of Zimbabwe), a Masters degree in Speech Pathology (California State University Fresno USA) and a Masters degree in Health Administration (Central Michigan University USA). Her work experience has included working as a Speech therapist in a variety of settings that included preschools, primary schools, rehabilitation centres and hospitals in the United States from 1993 – 2000. Assessed and treated children (0-12 years) with autism, intellectual disabilities, learning disabilities, global delays, cerebral palsy, traumatic brain injury and blindness. Assessed and treated adults with physical impairments, dysphagia and neurogenic speech and language disorders. Owned private speech therapy practice in Zimbabwe (2001- 2002). From 2003 (to present) she has worked in the Witwatersrand University as a lecturer, teaching, tutoring and supervising student in the Speech Pathology and Audiology Dept.

Abstract Early literacy skills for language development Reading is important for everyday life and access to the world of literacy for all children. Teaching reading is one of the most effective interventions for helping children with intellectual disabilities especially Down syndrome to overcome their learning difficulties. Reading is also a very powerful tool for teaching speech and language to Down syndrome children and for facilitating cognitive development. By intervening early regarding literacy one is providing a rich setting for language acquisition. To be an effective learner one needs to have adequate language skills. Hence it is important for parents and educators to be aware of the methods that have been shown to be effective for teaching beginning literacy to facilitate language learning. Studies have effectively documented that there is a strong relationship between teaching early literacy to infants and toddlers with intellectual disabilities, and their performance in kindergarten.

Biography Raine Pettipher, University of Johannesburg

For the past seven years Raine Pettipher has been a lecturer at the University of Johannesburg in the Department of Educational Psychology. Her specific lecturing and research interests include inclusive education and learning support. Presently she is conducting research into the role of teacher identity in the development of inclusive schools. She is also an education advisor to the project management team for the implementation of the first phase of White Paper 6 and the conversion of 30 primary schools to full service schools.

Abstract Curriculum Adaptation for Learners with Down Syndrome in the Foundation Phase The aim of this paper is to explore the progress of inclusive education in terms of curriculum adaptation for learners with Down syndrome. The paper presents an in-depth exploration of how the curriculum is being adapted for two learners with Down syndrome in two primary schools in Gauteng in order to meet their educational needs. Parents, principals and educators in the foundation phase were included as participants. Interviews were conducted with the participants and direct observation was conducted in two of the foundation phase classes at the respective schools. This data was complemented by document analysis and data collected focusing on Down syndrome specifically. A number of themes emerged that are indicative of the course of curriculum adaptation for learners with Down syndrome in the foundation phase. Firstly, there are multifaceted and multidimensional individual considerations that relate to the inclusive nature of the school and ultimately influence curriculum adaptation. These considerations include acceptance of the learner with Down syndrome; educators’ perspectives and experiences; parents’ perspectives and experiences; and areas of development influencing the learning of the individual learner. Secondly, two predominant elements steering curriculum adaptation were generated and will be presented graphically. The grade and individual planning precede the utilization of the six steps of adaptation activities for learners with Down syndrome. Lastly, two practical strategies including varied classroom management strategies and the employment of a learner assistant, may be employed to optimize the implementation of curriculum adaptation in the classroom.

Biography Magda Lourens – Down Syndrome South Africa As a parent of child with Down syndrome I have been actively involved in our local Down Syndrome Association since 1993. For the past 7 years I have served on the national board of Down Syndrome South Africa which is a parent driven advocacy group fighting for the rights of people with intellectual impairments in South Africa. With the background of being a trained high school teacher I was most interested in dreaming big re the education of my son with Down syndrome. That drove me to investigate and pursue the option of Inclusive Education up to this day.

Abstract Inclusive Education – Dream or Reality? When starting out on a journey one needs to first know where you are heading before step by step planning can start. Experience has taught us as a family that the route of Inclusive education is definitely not for the fainthearted. Having the dream and vision of true inclusion for our son, helped us to not be deterred by well meaning pessimists, minor disappointments, the realities of having a child with an intellectual disability, etc.Above all we learned to stay focused on our dream and goal while focusing on Cornel’s functional needs. In my presentation I will be touching on o What research shows regarding Inclusive education o What our experience has taught us o The strengths and weaknesses of the learner with DS o The role of the parent in the process of Inclusive Education o How the Education system facilitated inclusion for our son My talk promises to give practical hints to parents and educators on how to make the dream of Inclusive education a reality!

Biography N Malatsi, University of Botswana Mrs Malatsi is currently a Special Needs Lecturer in the Department of Educational Foundations, University of Botswana. Her main area of Specializations is on Intellectual Disabilities. She teaches course in Intellectual Disabilities and General Special Education courses to undergraduate and PGDE students. Her areas of research are, reading and related skills, inclusive education as well as early childhood education. She has presented several papers at national and international conferences and attended workshops and seminars both within and outside Botswana in her area of specialization.

Abstract Approaches in Enhancing Speech and Language Skills for Pupils with Down Syndrome in a Special Classroom in Botswana Communication skills play a vital role in improving the quality of life for individuals with intellectual disabilities. Children with Down Syndrome have problems with communication skills which may affect their learning. To what extent is the development of oral communication emphasized in the Botswana special classrooms? This issue is significant considering the fact that the regular curriculum used in Special education classrooms has not been adapted to include acquisition of oral communication skills. The present study seeks to explore the problems faced by the teachers in providing speech and language training for children with Down syndrome in the special classroom in Botswana and identify a suitable approach in enhancing speech and language skills of these children.

Biography Munyane Mophoso, Department of Speech Pathology, University of the Witwatersrand Munyane has a BA (Speech and Hearing Therapy) and B.Ed (Hon) (Remedial) both at WITS. Her highest academic qualification is a MA (Augmentative & Alternative Communication) Univ of Pretoria. She is currently registered for a Ph. D in Augmentative and Alternative Communication at Centre for AAC – University of Pretoria. In the past she has worked as a Speech and Hearing therapist at hospitals and at a special school for children with cerebral palsy in Soweto. Then worked as a lecturer in the Centre for Augmentative an Alternative Communications at University of Pretoria from 1994 to end January 2004. She is presently employed at Wits University in the school of Human and Community Development. Teaching educators enrolled for Advanced Certificate in Education (Learners with Special Educational Needs) in the discipline of Specialised education; and in clinical supervision students in Speech & Hearing Therapy department. Lecturers in Augmentative and Alternative Communication. Serves on the board of the South African Association of Learners with Educational Difficulties (SAALED) and a member of the Professional Board of Speech-language and Hearing for the Health Professions Council of South Africa(HPCSA) & Education Committee & Preliminary Enquiry Committee.

Abstract It’s Never too Late to Begin: Promoting Self-Determination Skills of Young Adults with Intellectual Disabilities This paper arose out the need to recognize the serious problem of exclusion of people with severe intellectual disabilities. Self-determination is an important determiner of quality of life in our society. This paper will begin by discussing the importance of promoting self-determination skills of young adults with intellectual disabilities. Then the four characteristics that entail it, namely; autonomy, self-regulation, acting in self-realizing manner, and being psychologically empowered will be critically discussed. The component elements that entail self-determination will also be briefly discussed within each characteristic. In conclusion, strategies that can be used by care-givers and/or educators to teach self-determination are briefly discussed. Additional research is needed to determine how self-determination can be included across subjects in the process of education and development of pilot programs that could be relevant in South Africa is recommended.

Biography Judy McKenzie – University of Fort Hare Judy trained as a speech and hearing therapist and worked in community based rehabilitation and inclusive education in early childhood development. In East London she worked at the Community Child and Development Centre, training teachers in informal ECD centres in inclusive education and at Rhodes University – Fort Hare with educators. Judy worked on educated development in the Eastern Cape in the Danida project. Currently she is registered for a doctorate at the University of Fort Hare. She is provincial coordinator of Sisonke Eastern Cape Inclusive Education Human Rescources development tender for the Department of Education. She has 3 children, the youngest of whom has Down syndrome. She has been closely involved with both the local Down syndrome association Border Kei and Down Syndrome South Africa.

Abstract The Social and Medical Models of Disability: Theoretical Issues in Understanding Self Advocacy of Persons with Intellectual Disabilities In the 1960s theorists such as Oliver and Finkelstein began to explore the social and political dimensions of disability. The basis for this exploration was a distinction between impairment and disability. Impairment was seen as the loss of function of a part of the body while disability referred to the loss of opportunities that the disabled person experienced as a result of the barriers raised by society to their participation. The social model emphasized the need for disabled people themselves to engage in a process of eliminating the barriers that they experienced in being fully participating members of society. The focus of activity moved from the individual with a disability to the changes required in society. The model also implied a rejection of the power imbalance between professional and disabled people themselves in determining how disability issues should be addressed. In theory this model embraced all categories of disability and was seen to be equally applicable to physical and intellectual disability. As a consequence of this approach self-advocacy groups, such as Disabled People South Africa, have had enormous success in gaining access to participation in all levels of society. However, the self-advocacy movement in South Africa for persons with intellectual disability remains in its infancy. I would like to examine how a medicalised notion of intellectual disability undermines the development of self-advocacy. I will then explore the need to move toward a more social understanding of intellectual disability. She will refer to developments in psychology and the social sciences broadly referred to as “Social Constructism” Biography Mbusi Nzimande, Chairperson DICAG Mbusi in the National Chairperson of DICAG appointed in April 2004. He is a parent of a disabled child and comes from a family of multiple disabilities. He has been involved in the disability field since 1999. Mbusi work’s for the Department of Health in Human Resources and is also involved as the Deputy Chair for Kaaren House Association for disabled people.

Abstract Mobilization at the Rural Level

DICAG as it is lovingly known by all parents of disabled children. For it is because of disabled children that DICAG exists today. Disabled Children’s Action Group is a national organisation formed in 1993 by parents of disabled children in South Africa with the aim of empowering themselves in order to crate a society where all children can feel safe, equal and cared for. In the early 90’s Disabled Children’s Action Group operated under the auspices of Disabled People of South Africa and hence became an autonomous organisation in 1997. This presentation will go on to show the successes in the mobilization of parents at a rural level as well as inform delegates of the function of the organisation.

Biography Johanna Kistner Johanna has worked in the field of Intellectual disability since 1976 and has done a Masters in clinic al Psychology and has been running a community based Mental Health Service since 1989 in Katlehong. She was one of the first people with Jeanette Schmid to address sexuality within residential homes. For the last 10 years she has been running workshops with homes training trust on sexuality for cares in residential homes and also helps the Department of Social Development with policy development.

Biography Viv Nightingale Mother of 3 children, the eldest Matthew Nightingale (born in 1977) has Down syndrome. Viv was a co-founder of the Down Syndrome Association (Tvl) 1979 and has since been extensively involved in many intellectually disabled organizations as well as lobby groups for the rights of people with disabilities.

Abstract Striving for Optimum Quality of Life As people with intellectual disabilities are benefiting from increased levels of public awareness, and many are enjoying access to mainstream opportunities (i.e. schooling, employment, etc) and becoming more and more independent, we must not lose sight of the fact that all people with disabilities will always need support and assistance to a greater or lesser degree. Whilst we continue to strive for a greater achievement and levels of independence we must ensure that the care and support that is needed does not fall away. In many instances, this support does not exist at all and needs to be created. It is estimated that between 3.5% and 4% of the general population have an intellectual disability of some description – this translates into an excess of 1.5 million people who will require some type of intervention and support. In accordance with our Constitution, people with disabilities have the same rights as any other citizen, but often are not able to exercise these rights. Some of these reasons include public awareness, insufficient, inadequate and inaccessible services and support structures, unemployment and many other socio-economic problems. In addition, people with intellectual disabilities must b afforded every opportunity to lad meaningful and fulfilled lives. Whether the individual lives with his or her family, within the broader community, or in a residential facility, there are areas of vital importance that tare often not adequately addressed. These include opportunities, and participation with people who have similar interests and abilities – people with whom they can identify and feel comfortable, and form meaningful friendships and relationships. A co-ordinated investigation and well-structured approach t these issues and challenges is needed in order for appropriate services to be established, adequately resourced and sustained.

Biography MC Potgieter, Ejada Aftercare, Oudtshoorn Michiel Potgieter was born at Petrussteyn and grew up in Reitz in the North Eastern Free State. He Matriculated at the Afrikaans Hoer Seunskool, Pretoria and studied at the University of Stellenbosch where he obtained all his degrees. He became a lecturer at his Alma Mater in 1966 and moved to the University of Port Elizabeth in 1971 where he became Head of the Department of Social Work. He published many articles in professional journals and wrote a handbook The Social Work Process. Development to Empower People. He moved to Outshoorn in 2000 and became the Director/Manager of the Ejade Institute for Optimal Human Functioning – a residential facility for Intellectually Disabled Adults.

Abstract The Introduction of a Holistic Developmental Model in an Aftercare Centre for Intellectually Disabled Adults Continuous evaluation of our traditional aftercare program at Eljada Aftercare in Oudsthoorn, underlined the fact that while the care and protection arm of our program were exceptionally good, maintenance of achievements and personal development of our residents left much to be desired. We have experienced a marked deterioration of physical as well as mental abilities amongst our 30 to 40 year olds, which include residents with Down syndrome. This discovery presented the staff with an exceptional challenge. We believe that a residential facility such as ours should do everything in its power to maintain previous achievements as far as is humanly possible, and that it should also strive to develop people to achieve optimal functioning as human beings. The program that we are putting in place at present is based on the knowledge and belief that the human brain, even in the case of intellectually disabled adults, has the capacity to reorganize itself and to develop and grow throughout our lives. In the case of the intellectually disabled, a systematic, well planned program is needed that targets whole brain stimulation and development in an organized fashion. The program is holistic in nature and focuses on the resident as a physical, emotional, intellectual, social, religious and cultural entity. The program is comprehensive, alternate and practical in nature and focuses on creative elements to create a pleasant and gratifying result. It utilizes music, movement, exercise, arts and craft, horses, and a variety of other aids to achieve optimal human functioning. Sensory/motor stimulation and integration forms an important part of the program…..

Biography Dudu Phama, Ntiro Project Manager, Mamelodi Dudu Phama trained as a Social Worker. She has extensive experience in the Development of Communities. For one year she worked as a Job coach for Ntiro – an Employment Project for people with intellectual disabilities looking for jobs and providing employment support for people with intellectual disabilities. A Project Manager for the past 3 years for this “Supported Employment” organisation. Managing a team of Job Coaches who train and provide support to the young with intellectual disabilities to enable them to integrate to their society.

Abstract The Successes of the Ntiro Project for Supported and Inclusive Employment This presentation will focus on: How Ntiro Started, Our Framework, Our Vision, South African Laws of Inclusion, Supported Employment, Inclusive Employment, Our Experiences, Job Coaches, Progress so Far, Showcasing Achievements and Way Forward.

Biography Julie Wilkinson – The Living Link Julia Wilkinson has a sister with an Intellectual Disability and has strived together with her family to encourage Nadine’s independence against all odds. Nadine’s prognosis at birth was not positive and yet today she is a fully integrated member of society. She has worked in the open labour market for 11 years and has lived independently for 7 years. Julia has a public relations and business communication qualification and coupled with her first hand experience she successfully launched a unique organisation, The Living Link in 2000. Her organisation has successfully trained adults with intellectual disability and placed them into the open labour market employment. Julia is passionate about changing the perceptions of the community, parents and employers when it comes to the opportunities that exist for the intellectually disabled.

Abstract Employment Success Stories This presentation will focus on: The placement process used by The Living Link, Characteristics of suitable jobs, Examples of suitable jobs / industries and Success Stories.

FAMILY LIFE

Biography Pessi Mnisi, University of Limpopo, Medunsa Campus Pessi Mnisi has a B.Communication Pathology degree obtained at the University of Pretoria 2000. She is enrolled for a M. Communication Pathology degree and is employed at George Mukhuri Hospital from 2001-2002. She is a lecturer at Department of Speech Language Pathology and Audiology at the University of Limpopo (Medunsa Campus) at present. She has also been running a private practice since 2003. She has presented papers on introducing a dyspagia programme to nursing student at the 3rd international Multi disiplinary Health Care Conference ‘Improving Health through Research’ in 2004.

Abstract A Review of the Prevalence of Hearing Difficulties in Children with Down Syndrome Down syndrome is associated with an array of hearing difficulties, which delays speech and language development. In most cases health care professionals and parents with Down syndrome are alert of speech and language delays associated with this syndrome but miss the hearing difficulties. The aim of the oral presentation will be to outline the prevalence of hearing difficulties in children with Down syndrome at George Mukhari Hospital. The presentation will also outline: a) the types of hearing difficulties associated with Down syndrome; b) Battery of hearing tests that could be conducted to determine hearing loss and; c) The management of hearing difficulties. The ultimate purpose of the presentation will be to desensitize health care professionals and parents with Down syndrome to the need to address hearing difficulties as early as possible in order to prevent speech and language delays.

Biography Kitt Boel, Chairperson, Down Syndrome Association of Denmark, Denmark Kitt is the mother of 3 boys, the youngest (9 years) of whom has Down syndrome. Trained as a Psychologist and a Teacher. She is currently employed in the Municipality Psychology Consultant for children, parents and teachers in connection with children with special needs. She teachers American students in “Children with special needs in Denmark”. She is the past president of the Danish Down Syndrome Association of Denmark 2000-2005 and is current Vice-President as well as Initiative Holder and a member of the executive committee of LEV in Denmark (covers all intellectual disabilities.) Runs courses and conferences for parents and professionals surrounding Down syndrome since 2000. Her special interests are Parent support, Child development according to special needs.

Abstract Parent Support and Coping Worldwide research on support for parents of a child with leaning disabilities all agree on the following topics. Families need emotional, practical and financial support. Culture and society have great impact on the actual support and the need of support. The quality of support determinates whether the support is beneficial or not. Research on this topic is in its early days, but will outline a few tendencies so far. Also differences in coping ability and opportunity, according to psychological literature will be outlined. In literature and research on family support she found the impact of coping on at least 4 different levels of human life in society. Kitt will be discussing them in detail during this presentation.

Biography Marise Burger, Chere`Botha School, Cape Town Marise started as a Pre-primary teacher (1971) and taught at Vista Nova School for CP children –This is where she discovered her purpose in life – a passion for handicapped children. Five years later and a family of 2 boys followed, one of which has ADHD and the other minimal brain damage due to a near drowning accident. In 1987 Mrs. G Botha, director of DSA Western Cape approached her to start implementing the Washington Programme by doing early intervention and home programmes and evaluating new children. After 18 years she is still learning day by day with immense job satisfaction.

Abstract Early Intervention and the Family This paper will reveal how the Early Intervention Programme is being implemented at the Chere Botha School. It too will show the importance of such an extensive programme, covering all developmental milestones together with evaluations. This holistic approach involves the entire family who visit the centre every 3-4 weeks and issues such as discipline and boundaries are discussed. A well equipped toy library assists in making this programme stress free and fun.

Biography Yolande Geyer, Sibling (Grade 8 Scholar) Yolande Geyer is 13 years old and has an 11 year old brother with Down syndrome. She has lived in South Africa and the USA with her family. She received a gold medal for her science expo project “Bilingualism in Down Syndrome Children”. She has a passion to educate parents, teachers and the community about the capabilities of children with Down syndrome – often using her own brother as an example. She is captain of the girls U14 Gauteng chess team, excels at academics, public speaking drama, piano, violin and learns Spanish as a third language.

Abstract Bilingualism in Down Syndrome Children I am 13 years of age and I have a brother, Philip, who was born with Down Syndrome. He is now 11 years old and he is fully bilingual in Afrikaans and English. In this presentation I will tell you how our family has worked together to help Philip achieved complete bilingualism by making his life as normal as possible and exposing him to many different therapies and activities. Philip started his school career in a mainstream school in America. The learning specialists gave us invaluable support in helping Philip to do Maths with the touch point system. After 3 years Phillip could read English at his grade level. A remarkable achievement for any child – more so for a child with Down syndrome. On our return to South Africa (when Philip was nine years old), we put him in an Afrikaans school, where he learned to read Afrikaans from scratch. It took him only about 6 months to catch up with his grade level in Afrikaans reading! At the beginning of this year, my parents moved Philip to an English Christian School. His latest report shows that he got above 94% average for this term. Although he is in grade 4, he has started this year with grade 2 - without any curriculum adaptations. He is on target to, not only finish grade 2, but also start on the grade 3 curriculum. Philip has got both Afrikaans and English friends. His comprehension of both languages is excellent and he moves effortlessly between the two languages. His pronunciation is however still poor and he struggles to make himself clear when he tells a long story. Being bilingual has enabled Philip to be a truly independent person. It has improved the quality of his life tremendously and it has also eased the pressure on his family, because he can do so many things for himself. I would urge everybody to introduce a second language to your Down syndrome child! Philip is proof that it can be accomplished!

Biography Dawn Molepo, Down Syndrome South Africa As a trained nurse I became involved in the outreach activities of Down Syndrome South Africa. I have been the counsellor of an early intervention centre in Atteridgeveille, a suburb on the Southern side of Pretoria. For this position I have been trained in the Washington Early Intervention Programme as well as the Audiblocks programme. Furthermore I have been serving on the board of the Down syndrome Association of Pretoria for the past six years and since 2001 have served on the national board of Down Syndrome South Africa.

Abstract Supporting Parents of Young Children with Down Syndrome and Intellectual Disability The Attridgeville clinic for Down syndrome and intellectual disabilities has been active for the past 6 years. At the centre we assist children with developmental delays in the overall development such as cognitive, gross and fine motor control as well as speech and language development. Since the start of the programme Dawn has been the counselor for this project and in her presentation will share with you the lessons she has learned throughout this time.

Biography Moses Mokgoko, Sibling 2nd Born of four boys to Rebecca & Mphepheti Mokgoko. Moses matriculated in 1998 and enrolled for Bcom at the University of Pretoria - completed 2003. He was employed by the same institution and enrolled for Bcom (hons) – completed 2004. Then left the university to join the Logistics Bureau for just over six months before joining UCS Solutions where he is currently employed.

Abstract Change that a Sibling with Down Syndrome can bring within a Family The year is 1997 and the date is 5th January, the place is Wisani Medical Centre in Ga-Rankuwa. This is the time a child by the name of Ratladi, the 4th son in the family of Mr and Mrs Mokgoko was born. The doctors realize some uniqueness in the child. Later it is realized that he is a child with Down syndrome. We don’t know what this is, until my parents seek advice etc. We are in the dark still until he grown within the family we start to understand the uniqueness about Dr. Ratladi as I call him. He brings change within the family as we start to appreciate, love, support him in everything that he does….

Biography Maria Overeem – Treasurer & Founder Member of the Botswana Down Syndrome Association Maria Overeem’s second born was diagnosed as having Down syndrome by a German pediatrician in Botswana. Through the encouragement and contacts of the same doctor Maria and 3 others started the Down Syndrome Associations of Botswana in 1999, which is now a flourishing organisation. Maria is an information link between the Association and various international organizations. She translates ideas and best practices from other parts of the world to initiatives in Botswana, together with the small but active Committee of the Association. Being a professional training consultant helps as well. It is Maria’s ambition to start an employment agency for people with disabilities in Botswana. She also works with the Deaf Empowerment Trust.

Abstract There are many challenges facing parents of children with Down syndrome in Botswana. Maria will be talking about the challenges, best practice and the effects of HIVAIDS on families of children with Down syndrome and other Intellectual disabilities Biogrraphy Tabitha Haw, Division of Human Genetics, School of Pathology, National Health Labority Services, University of Witwatersrand Tabitha was born in KwaZulu Natal and attended school there. She graduated from the University of Natal in Pietermaritzburg with a BSc degree in Genetics and Biochemistry. She went on to do her BSc Honours degree in Human Genetics at Wits University. After living abroad for 2 years, she continued her studies at Wits and completed her MSc (Med) degree in Genetic Counselling this year. She is currently employed as a Genetic Counsellor in the Department of Human Genetics at the National Health Laboratory Service in Johannesburg.

Abstract Genetic Counselling for Parents with a Child with Down Syndrome Genetic counselling in families affected by Down syndrome is a process that seeks to assist parents to understand the nature of the syndrome, its transmission and the options open to them for management and family planning. This includes helping the family or individual to understand the medical facts in terms of the diagnosis, prognosis and management of the condition and appreciate the genetics and risks of recurrence as well as assisting them to understand the options for dealing with the risk. Genetic counsellors use a non-directive approach and autonomy of the client is considered a priority. A diagnosis of Down syndrome in a baby may be a great shock for parents. Genetic counsellors are trained to recognise and explore client’s emotions respecting the experience, knowledge and values that the client brings to the session. This enables the genetic counsellor to provide emotional support by facilitating communication and helping the client to identify coping strategies and support systems. Parents need time to come to terms with a diagnosis of Down syndrome, and need to understand that there will be a period of grief. The genetic counselling process assists parents to work through their loss so that healing and acceptance can begin. The genetic counsellor also ensures that the child with Down syndrome is referred to appropriate medical specialists and occupational or physiotherapists. We aim to show that genetic counselling is a useful process in assisting families come to terms with and understand a diagnosis of Down syndrome in a child.

Biography Elizabeth Jabuliswe Maphumulo, Durban and Coastal Mental Health Elizabeth (Jabu) has worked as a Social Worker for the Department of Social Welfare in the Prisons’s department, Kwa-Mashu Family and Child Welfare Society. She has mostly worked with vulnerable children e.g. children in need of care, abused children and children in trouble with the law. She is presently employed by Durban and Coastal Mental Health as a Day Car Programme co-ordinator, responsible for designing and implementing stimulation programme, monitoring success rate of the stimulation programme and preparing evaluation reports in respect of children with intellectual and physical disabilities.

Abstract Early Intervention in Children with Profound and Severe Intellectual and Physical Disabilities Durban and Coastal Mental Health is an Organisation that was established in 1940 and its vision is to be a dynamic movement, which serves as an effective resource to empower people to attain optimal well-being and quality of life in a just Society. In this presentation we will show how the organisaiton established a Day Care Centre in the late 80’s and has since moved from being mostly a caring environment to a Day Care Centre with individualised therapy programmes drawing up upon a range of sources to stimulate the brain which help the body function better. Changes have been observed in the children in our Centres both physically and mentally, ranging from movement to speech and vocabulary.

Biography Bheki Skota and Rona Newmark, University of Stellenbosch Bekisisa Andrew Skota is in the process of completing his Master’s in Educational Psychology at Stellenbosch University. His thesis looks at the needs of Xhosa speaking learners with Down syndrome. Currently, he works at the Mitchells Plain Education Support Centre, a division of the Western Cape Educational Department, as a school psychologist. The services that he renders includes conducting psycho-educational assessments and workshops, debriefing, training of teachers and parents, and acting as a consultant for teacher support tams or educator support teams (EST). Bheki hopes to further his studies by enrolling for a PhD, which will further explore the quality of life of individuals with Down syndrome.

Abstract The Needs of Xhosa Speaking Learners with Down Syndrome The Department of Educational Psychology, at Stellenbosch University embarked on a project, Intellectual Disability Quality Lifespan Development Project whereby various researchers conducted research projects on Intellectual Disability and Down syndrome. One of the student research projects that stemmed from this project focuses on the needs of Xhosa speaking learners with Down Syndrome between the ages of thirteen and fourteen years. In a review of existing literature on Down syndrome in South Africa, it was found that the African perspective on disabilities and the needs of learners with Down syndrome was insufficient. Thus, it was for this reason that we explored the needs of learners with Down syndrome in the Xhosa culture, in order to eventually inform support processes. Some of the findings revealed that in this culture the family with a child or person with a disability was often seen as being cursed, that one was not supposed to share your clothes or food with a person with a disability, or even shake their hands. These individuals were often the form of entertainment in the community, and would be requested to sing and dance. The findings of the study indicate that support for children with Down syndrome in the Xhosa community requires further attention.

Biography Mphepheti Mokgogo, Down Syndrome South Africa Mphepheti is the father of 4 strong boys. Entered in the Holy Matrimony in 1981 with Rebecca. Hold a Diploma in Road Transport from UNISA. Joined the Down Syndrome Association in Pretoria immediately after realizing that our son (Ratladi) was declared to be a child with Down syndrome, since then we have not looked back trying to fight for the children’s rights.

Abstract My Experience of Inclusive Education in Garankuwa Mphepheti Mokgogo is a parent of a child who has Down syndrome, viz. Dr Ratladi Keabetswe Mokgoko born 5th January 1997. He is going to give a presentation of his experience in inclusive education. H will start by inclusion in general. I mean inclusion in the Community you live in before you go to learning centres. We must be prepared to force inclusion by making sure that our children mix and play with our neighbours children. His experience is that as a family it had been difficult in allowing Ratladi to mix with the neighbours children. His experience with learning centres is that officials are trying to block entry into their centres, because they do not want challenges or they are not trained enough to know and understand this precious gifts from God and lastly parents are also not fighting enough against unfair discrimination against their children.

Biography Michelle Klompas, University of Witwatersrand Michelle Klompas completed a BA Speech and Haring Therapy degree at the University of Witwatersrand, Johannesburg at the end of 2002. She is completing a Postgraduate Diploma at the University of the Witwatersrand, department of Speech Pathology and Audiology covering: advances in child language disorders, early intervention, clinical ethics and professional issues, research methodology. She is currently completing a Masters degree in Speech Pathology – Dissertation at the University of the Witwatersrand. Her area of research and interest in Down syndrome and inclusive education. She is also employed part-time as a speech-language therapist at a private practice.

Abstract Inclusive Education of the Primary School Aged Child with Down Syndrome This research aimed to document a case study of a primary school aged child with Down Syndrome in an inclusive education setting in Gauteng Province, South Africa. In order to accomplish this main aim, the following sub-aims were devised: firstly, to describe the overall functioning of the child with Down Syndrome in the inclusive school context, particularly within the domains of communication – speech and language, academic progress, and socialisation; secondly, to identify and examine the perceptions, attitudes and experiences of the parent of the child with Down Syndrome regarding inclusion of children with Down Syndrome into ordinary schools; thirdly, to identify and investigate the perceptions, attitudes and experiences of the teacher who was at the time of the study teaching the child with Down Syndrome, regarding inclusion of children with Down Syndrome into ordinary schools; fourthly, to identify the role of speech-language pathologists and audiologists regarding the inclusion of children with Down Syndrome into ordinary schools; furthermore, to identify factors which contribute to successful inclusion of the child with Down Syndrome in inclusive school settings; and finally, to explore barriers to successful inclusion of the child with Down Syndrome in inclusive school settings. Implications and recommendations for all professionals, including the speech-language pathologist, parents and community members involved with inclusion of children with Down syndrome into ordinary schools were obtained. The research was carried out using a case study design which will be discussed in this presentation.