On the 24th the first ever Global Disability Summit was held in London. It was hosted by the UK Department for International Development (UK DFID), along with the International Disability Alliance and the Government of Kenya. Find out more here: http://www.internationaldisabilityalliance.org/summit
Down Syndrome International (DSi) was invited to make a statement at the Summit about employment and work for people with Down syndrome. DSi asked for ideas from its Committee of National Representatives With Down Syndrome. The Committee is made up of people with Down syndrome from 27 countries. Then it combined all their answers together to make a statement.
The statement was then presented to and approved by over 70 people with Down syndrome from around the world at the World Down Syndrome Congress in Glasgow.
Here is the statement that was read by Emeric Jeanjean, a self-advocate with Down syndrome:
This is a statement from people with Down syndrome from around the world.
Getting a job can be hard if you have Down syndrome.
Often we are paid less and sometimes treated badly.
This needs to change.
We want you to know that we are ready to work.
We can do the same jobs as everyone else.
We work hard and should be treated the same as everyone else.
Having a chance to work and be treated equally is our right.
So what do we need?
We need a good education, just like everyone else.
We need training to get ready for work.
We need support to find the right job.
We need to be given a chance by employers.
We need to be treated right at work.
Let us help your business succeed.
Let us help our countries succeed.
Respect our human rights.
We just need an opportunity.
Sheri Brynard (South Africa)
“Work gives me a reason to get up in the morning, dress nicely and mean something. My days are never wasted”
Ashish Joshi (Nepal)
“You cannot discriminate people on the basis of their disability. If given the opportunity they can also prove themselves as any other.”
Eileen Dunne (Ireland)
“I have two jobs and work and get paid. I work in Tesco and at a hair salon. I want to be independent.”
Jaime Cruz Juscamaita (Peru)
“It is our right to have supports to get a good job. We have the right to be paid the same and not be segregated because of Down Syndrome.”
Shahadat Akbar Otonu (Bangladesh)
“I think we should be paid the same as everyone. Because, we can do the work perfectly like other if we have the same work.”
Favour Onyisi Jideonwor (Nigeria)
“Having my own money helps me live how I want.”
George Okudi (Uganda)
“The government should have a bigger part to play because it is the one which should encourage all companies or organisations to employ us.”
Andile Alexis Dube (Zimbabwe)
“I can work! I want equal pay.”
Are you a health professional, working with people with Down syndrome? If so don’t miss out on the World Down syndrome Congress 2018. I can guarantee it will be one of the most enjoyable CPD experiences you will ever have.
I am a Paediatrician based at Nottingham Children’s Hospital in the UK. I run a service for children with Down syndrome, and am a founder member and current web editor for the UK and Ireland Down Syndrome Medical interest Group. I first experienced the World Down Syndrome Congress in Vancouver in 2006, and was blown away by the experience – so much so that I have not been able to stay away since, and now plan my professional and personal life around attending each 3 years.
The Congress is unlike any other meeting I have ever been to. Health professionals will find parts of it familiar, with lectures, paper presentations and posters on medical and related scientific topics as you would find at any medical meeting. You will be able to hear about the latest research, and learn about good practice in the care of individuals with the syndrome from experts around the world. At the pre congress Health symposium on 24th July, the focus will be entirely clinical, concentrating on the important topics of sleep disordered breathing, coeliac disease, adult health screening and mental health.
However the congress offers so much more. From an academic point of view, you will be able to learn from other professional disciplines – it is always very enlightening and refreshing to see how other health professionals, colleagues in education and social care approach their work in supporting people with Down syndrome, and conduct their research.
I have returned from each congress with new information and ideas that I have incorporated into my day –to – day practice. I have built relationships with colleagues from around the world that I have been able to draw upon for collaborative work and clinical discussion between congresses.
But the real treat is the people – a unique opportunity to spend time with people with Down syndrome and their families from around the globe, to get a glimpse into their lives, and develop a greater awareness of their needs, hopes and aspirations, to better understand the challenges they may face, and to be able to join together in celebrating achievements.
And then there are the social events – there will be entertainment by talented musicians and dancers with Down syndrome, films to watch and I expect a wee dram or two will be consumed – after all – it is in Scotland, and the Scots are well known for their hospitality.
So – this congress is certainly not yet another dry academic meeting. The research and learning are certainly there – but so are the people and relationships, which will last well beyond the congress.
My experience at previous congresses has had a major impact on me personally and in my work with children with Down syndrome.
I cannot wait for WDSC2018- See you there?
Dr Liz Marder , Consultant Paediatrician, Nottingham Children’s Hospital.
World Down Syndrome Congress – a once in a lifetime opportunity for the nursing community.
The World Down Syndrome Congress is coming to the UK for the first time in nearly 40 years. The Congress takes place at the SEC’s Scottish Event Campus in Glasgow between 25th-27th July, where over 1200 researchers, health care professionals and families will come together to share experiences, best practice and learning through a detailed programme of oral presentations, practical workshops and Meet the Expert sessions. The congress represents a once in a lifetime opportunity for independent nurses to learn more about Down’s syndrome from an international community of experts, brimming with experience and knowledge about the condition.
For nurses, the requirement to understand the care needs of people with Down’s syndrome is on the rise, particularly those working with the elderly or in a care home environment – due to medical advances, people with Down’s syndrome are now living longer, some into their 60’s and 70’s. This means that nurses working with elderly patients will come across people with Down’s syndrome more often, requiring them to have a greater knowledge of the particular care needs of people with the condition, including the high instances of dementia and Alzheimers.
Over 50% of adults with Down’s syndrome will go on to develop Alzheimer’s by the time there are 50. Many will also develop early on-set dementia from the age of 30, which is part of the reason why people with the condition require regular health checks. The World Down Syndrome Congress provides a unique platform for learning about this and other important medical conditions, with a number of sessions relevant to nurses – one of the sessions entitled; ‘aging in place with down’s syndrome and dementia – an ethnographic account in a small group home setting’ looks at the very issue of the relationship between aging and dementia in patients with Down’s syndrome and the impact this will have on the provision of care from health professionals.
On Tuesday 24th July, prior to the Congress’s main programme, will be a ‘Health Symposium,’ where the latest research into Down’s syndrome related health conditions will be revealed and discussed – people with Down’s syndrome are commonly born with a number of health issues that affect their everyday lives. The symposium focuses on a range of health-related topics presented by the world’s leading researchers and experts. These include ‘emerging issues relating to celiac disease in children with Down’s syndrome,’ ‘Adult health screening – should we be screening for conditions less common in Down’s syndrome which are recommended for the general adult population?’ ‘Sleep-disordered breathing with children with Down’s syndrome’ and a session covering ‘mental health in adults with Down’s syndrome.’
Nurses caring for the elderly or people with learning disabilities are urged to take this unique opportunity to learn more about best practice in the care of people with Down’s syndrome, as part of their continuing professional development and we are in the process of seeking accreditation. To register and book tickets for the World Down Syndrome Congress 2018 and/or the Health Symposium, please visit https://confpartners.eventsair.com/wdsc-2018/mainregistration/Site/Register
or call us on 0131 306 0120. A full conference programme can be found here: http://wdsc2018.org.uk/programme/
By Pandora Summerfield, CEO of Down Syndrome Scotland
My youngest daughter Nina was born in August 2010. The day after her birth, we suspected something was not quite right with our new baby. We were later told by the senior Doctor, that Nina did, in fact, have Down’s syndrome. This was a complete shock to us. We had no inkling during pregnancy, and with no instances of the condition in our families, we were thrown into uncharted territory.
At that point, I learned my first lesson as a dad of a child born with Down’s syndrome – hospitals and doctors are not the best places or people to provide impartial, objective advice and guidance to parents struggling with the impact of receiving this information about their new baby.
I’m ashamed to admit now, the thoughts that passed through my head, at this point, on being told that my child was disabled and how sorry everyone was for us. What should have been said was “congratulations, you’re one of the lucky ones, you have a child born with Down’s syndrome, welcome to the community.”
On leaving hospital that day, I came home and immediately searched the internet for information about Down’s syndrome. I needed to make sense of it and learn more about what I was dealing with. I needed information and facts.
The first website I found was Down’s Syndrome Scotland. After spending hours reading up on the subject, I realised that people with the condition come in all shapes and sizes and that all the stereotypical images that I associated with Down’s syndrome were false. I also learned that all the negative emotion that I was feeling, at the time, was normal and many other parents had experienced similar emotions.
Within 24 hours, my world view had changed, I thought at the time and still do to this day, “I can handle this, this isn’t the end of the world”, no matter who says it is.
This was for me, an important first step. It was the beginning of choosing my approach and attitude, as to how I was going to deal with this life challenge. I was also very aware that I was going to have to change and being a dad of a child born with Down’s syndrome, was an opportunity for me to grow and evolve, even if at times, I was reticent of that change, and often felt out my comfort zone.
Tony Robbins once said, “it’s not the events in our life that shape us, but what we do with them that counts”. I believe in this completely. As a dad, I get to choose my response, and my choice was to completely embrace that I’m the father of a child born with Down’s syndrome and not take a backward step with it.
Of course, there are pro’s and con’s to this approach. For example, I learned to appreciate Nina’s achievements all the more readily and to accept that she might be
behind her peer group in certain areas, particularly at school, and not to worry about this.
I learned that acceptance is the key and to let go of my resistance to things, that I can’t change or control. I also learned that children born with Down’s syndrome have as much talent and potential, as other children, and we chose to focus completely on the things that she’s good that, to take a strength-based approach and not waste a moment getting anxious about the things she’s not good at, or is uninterested in. To be honest though, there is very little that Nina is uninterested in, her curiosity and willingness to try new things is huge. The results of this approach are a very happy and contented child and a relaxed dad for most of the time!
At the time of writing (May 18), Nina is now 7 years of age and has just completed Primary 2 of a mainstream school. She is an incredible child, who reads and writes, she is a street dancer, goes to Rainbows, and is learning to swim. She also has a wide circle of friends and sees nothing, but smiles, wherever she goes. She lights up a room with her presence and is the very definition of “normal,” whatever that means these days?
Her Down’s syndrome doesn’t define her nor me. It’s just one tiny part of who she is.
As her dad, she’s the best thing that’s ever happened to me. By simply being around her, it has helped me to look at, and reflect on, how society views children born with the condition and with Nina’s help, to completely subvert those clichés.
In truth, I don’t waste a moment of my life worrying about society’s inbuilt bias and prejudices, because I believe that Nina and other children like her, will bring down those barriers, by the sheer force of their personalities, and demands to have the same life expectations, as everyone else. I’m optimistic about this.
What are those expectations? The right to have a full and happy life, the right to have a well-paid, meaningful job, the right to live independently, to have positive relationships, and to be treated equally and be recognised as valued members of the community. The same as you and me.
My job as her dad is to help and support her in these aims. I know that there are many challenges ahead for Nina, but that’s equally true of my older daughter, who doesn’t have Down’s syndrome – different challenges, same response. I don’t mind sharing that Nina simply makes me happy every day and I’m grateful for every moment that I get to spend with her. She’s ready for the future and I am too
One of the most exciting events to happen to us is Down Syndrome Scotland being chosen to host the World Down Syndrome Congress 2018 in our home city of Glasgow – for us this is like being chosen to host the World Cup. The Congress brings the worldwide Down’s syndrome community to Glasgow, and it’s a massive opportunity to highlight the achievements of people born with the condition and to exchange information and celebrate the success of the Down’s syndrome community.
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I work with Additional Support for Learning Services (ASLS) and my role is to support children with Down Syndrome from birth through to secondary school, as well as supporting the families of whom I have the greatest respect for and feel an honour to be part of their journey.
During pre-school years, we demonstrate and offer suggestions of games, song, assist with routines within the home and crucially introduce signing. We also visit Early Years Centres and Nurseries offering the same and supporting them when there is a need for adapting the environment or approach to learning for the individual. Children can often struggle to generalise a skill in a new setting hence the importance of being involved in both home and the nursery settings.
The transition from nursery into Primary 1 is monumental for every child, no more so than for the children and parents of individuals with additional support needs such as Down syndrome. The introduction of The Presumption of Mainstream, a Scottish Government initiative to improve inclusion in mainstream schools for all learning abilities, has allowed parents a clear option for their child. In order to make this choice successful, the school and the child need to be appropriately supported.
Lauren Elliott Lockhart, parent of two year old Trudy, is clear what her hopes are for her child’s future… “I want her to go to her mainstream school but I also want her to have access to teachers who have in-depth knowledge about how best to teach my child. I want her teachers to be excited about the prospect of learning new skills.”
Currently there is no compulsory course offered to student teachers to ensure that they are equipped with the strategies and knowledge of the wide range of pupils that they will inevitably have in their classrooms. The ASLS service is committed to try to bridge this fundamental gap and offers a great deal of courses and training opportunities for teachers and pupil support assistants (PSA).
As a result of an investigation that I carried out for Edinburgh City Council in 2006, I found that teachers who had a pupil with Down Syndrome in their class for the very first time, were concerned about their ability to help the pupils reach their full potential. They felt worried, unprepared and somewhat de-skilled. Staff needed to feel confident, supported and knowledgeable.
Speech, language and communication underpins all areas of the child’s development. It is not through clinical 1:1 sessions alone that children will gain their potential, it is ensuring that these are embedded in the everyday lives of the children and in all that they do.
I teamed up with Speech and Language Therapist Caroline Rendle and by 2008 we had establish a model of training aimed at assisting teachers and PSA staff. The key to this training is the timing, training before the child attends the school. Teachers and PSA’s need to attend together so they have a shared knowledge of the strategies that can be vital to a successful placement.
The training has continued to follow the same model for the last 10 years with updates dependent on feedback from staff and the inevitable development of strategies.
So what does the training involve?
The training is provided to teachers working from Nursery school up to P7. Nursery staff are invited to attend a training session in January, prior to the child starting school the following August. The training supports the concept of the Visual Support Project (VSP), which is run throughout the City of Edinburgh. Pupils with Down Syndrome are highly visual in their learning and the VSP helps to make it easier for them to make sense of the visual timetables that are key to their transition into school.
The strategies discussed include the suggestion that six months prior to the child going to school, the nursery introduces a loose visual timetable. To introduce the ‘work’ symbol, the child works on three or four highly motivating activities that are presented in a start basket. As each ‘task’ is completed, it is moved to the finished basket. Initially, this takes place in a quiet room, to allow maximum concentration, but over time, the ‘Work’ is completed in the busy playroom. Thus preparing the child for the P1 classroom and the expectation that they will be sitting at a table at some point in the day. The other symbol that is key for the child is ‘choosing’. The child needs to know that they can ‘choose’ after they complete their work as an incentive.
Primary 1 staff are invited to attend training in June titled ‘Preparation is Key’. There are sessions for P2-4 staff and P5-7 staff which also take place in June. Each training session includes an introduction to ‘Signalong’, the Signing format that the City of Edinburgh has invested in to ensure continuity throughout schools. The follow-up session in September titled ‘Now You Know Your Child,’ focusses on assessing the level/ needs of the individuals and differentiating the curriculum accordingly.
Throughout all training, great emphasis is put on the need to enhance each child’s independence, thus supporting skills for life. The best PSA staff are those who can step back, supervising from a distance, prompting sensitively, optimising peer interactions, as well as balancing the intensive 1:1 programme that pupils follow.
Throughout the year, the pupils in Primary 1 and their staff are invited to attend the LINK Group. The class teachers and PSA’s attend four sessions a year with their pupils with Down Syndrome. While the pupils engage in social games, and have access to sensory and soft play bases, the staff experience the ‘total communication’ approach i.e. using signing, visuals, song signifiers and routines to enhance learning. Staff have training input from the school’s Occupational Therapist and Speech Therapist during two of the sessions.
Each child is unique and although the background training is essential, visits to schools for support staff in situ is still highly valued. With the increase of pupils with Down Syndrome within the mainstream setting and the challenges brought on by cuts, these visits are inevitably fewer than they were 10 years ago, however, the model has been a constant.
Lauren Elliott Lockhart appreciates the support and feels that ‘……My daughter will not thrive in the mainstream without this. It is down to the wonderful role of the ASL service in our Local Authority to keep this balance correct, providing specialist support in a mainstream setting……’
You can find out more about Isla’s groundbreaking special needs training programme at her plenary speech at the World Down Syndrome Congress in Glasgow between the 25th– 27th July 2018. For more information please visit http://wdsc2018.co.uk/welcome-professionals/
Isla Ross is primary school teacher with a keen interest in working with pupils who have a variety of needs – this lead her to a five year post in an Edinburgh special school. Having learnt many skills, strategies and creative learning techniques, Isla was appointed to open two Language and Communication Classes, which are resources attached to mainstream schools in Edinburgh. In 2005, She was asked to look at the City of Edinburgh’s provision in mainstream school for pupils with Down syndrome. After observing many pupils and their experiences of school, she outlined a plan which aimed to provide continuity of support for both staff and pupils. Twelve years on, the City of Edinburgh Council is still successfully delivering the model, which is very well received. Isla is one of the lead plenary speakers at the World Down Syndrome Congress in Glasgow between 25th-27th July 2018.
Written by Isla Ross