Education project
During 2022, we worked with Down Syndrome International (DSi) and Down’s Syndrome Scotland to run a UK-wide research and advocacy project on ‘Inclusive Education’, looking at factors such as its definition and implementation.
From this project, we have identified many areas where knowledge can be shared to support the education and inclusion of learners who have Down’s Syndrome.
Over the coming months we are going to be building on the original project and the DSi Education Guidelines to both highlight existing resources and to develop new resources to support teachers, SENCOs, school leaders and people who have Down’s Syndrome and their families.
We hope that this Education Project page is one that you will bookmark and return to time and time again for the latest resources and information about education from the Down’s Syndrome Association.
Over the next 15 weeks, we will be introducing an important topic per week relating to the education and inclusion of learners who have Down’s Syndrome.
These topics have been chosen based on responses to the Inclusive Education project undertaken in 2022, the most frequently asked questions on our Helpline, and the topics that members of Our Voice think are important for us to share.
Each week we will publish a range of links to resources including top tips, videos to watch, links to resources on the Down’s Syndrome Association website, plus collaborations with other organisations with whom we work. Over the fifteen week period, these resources will be shared here for you to return to when you need.
If you would like to be kept informed of the new content and the weekly themes, please sign up below to receive email updates:
Events
Back to school
Crafting a successful start to the year
At the DSA we recognise that the back to school period can be a stressful time – for children, parents/carers and teachers alike.
It’s important to plan early so that your child can have a smooth transition. We hope to make this time a little bit easier as we share some helpful information and resources to help with preparing for a child who has Down’s syndrome to start school, change school or simply move to a new classroom or teacher.
If, after looking at these resources, you still have concerns or questions, please remember that we offer a free helpline 0333 1212 300 (10am-4pm) or you can contact us by email or via our website contact form.
We also offer several online training events that may be of interest.
Visit our website for all the details or email training@downs-syndrome.org.uk
For parents and carers
Recognising that the back to school period can also be stressful for parents/carers, we also think it is important that you remember to look after yourselves too. These resources my help.
For Educators
The DSA has decades of experience of supporting educators in welcoming pupils who have Down’s syndrome into their classrooms.
We recognise the importance of evidence based practice, and also strategies that work well in practice.
Below we share just a small selection of the resources available to help you. We do not want to overwhelm you with everything all at once!
Over the coming weeks we will be sharing lots more, but if there is anything else you need in the meantime, please do not hesitate to get in touch with us.
(including tips about terminology to be avoided)
Education factsheets for every stage of education
There are some excellent tips for including some learners with additional learning needs that can also be found in DSi’s International Guidelines on the education of learners with Down Syndrome.
Pay per view training
Our Pay Per View training recordings cost £10 and are available to view for seven days after purchase.
Inclusive education
Learning together, building inclusive communities
At the Down’s Syndrome Association, we believe in the rights of all learners who have Down’s syndrome to inclusive and equitable quality education and lifelong learning opportunities. .
This week we will be looking at what an ‘inclusive education’ might look like for pupils who have Down’s syndrome and some of the principles that underpin our work.
Every learner who has Down’s syndrome is unique. Individuals differ across all aspects of social and cognitive development as well as in their family support and educational opportunities. Every individual is helped by teaching staff having high expectations.
A parent from Wales (Amanda), whose son’s transition into his new school had gone really well shared this quote from one of his teachers:
‘It’s our privilege to have him here. The students and the staff love him. He completes us, he’s the cherry on the top. Even the grumpy maths teacher has been heard saying “when Morgan enters a room, the room lights up.”‘
Children who have Down’s syndrome need skilled teachers who understand their current skills, abilities, strengths and interests and who can teach them the next steps through engaging teaching and learning activities. They need to be welcome, socially included members within their classrooms and schools. The positive attitude of the whole school is fundamental: schools need a clear and sensitive policy on inclusion with committed and supportive staff, especially the senior management team.
Most children who have Down’s syndrome need additional support for optimal learning in all types of schools. The quality of support the child or young person receives can have a tremendous impact on his or her learning. Class teachers and teaching assistants (TAs) should meet regularly to liaise, plan, feedback and monitor progress.
We realise that everyone has knowledge and experience in their context and think that sharing this is beneficial to everyone interested in providing, or receiving, a more inclusive education offer in the UK (and internationally).
Therefore, we look forward to hearing from you about what works in your setting, so that we can further share great practice.
What is inclusion?
Inclusion is a highly contested term, and it can mean different things to different people.
It is still an emerging practice in many school systems around the world and misconceptions are prevalent. Inclusive schools welcome all students into the school. A school is not inclusive when it does not accept all students, even if it labels itself as inclusive.
(DSi Guidelines, p13)
Our work at the Down’s Syndrome Association is underpinned by a human rights approach to education, drawing on Article 24 (Education) of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, United Nations, 2006). Three key human rights concepts identified in Article 24 of the UNCRPD of relevance to the education of learners with Down’s syndrome are important to our work, namely:
- Inclusive Education
- Lifelong Learning
- Equal Opportunity.
A recent UNESCO International Forum on Inclusion and Equity in Education (UNESCO, 2019) event which sets out an approach where every learner matters, defined inclusion as:
‘a transformative process that ensures full participation and access to quality learning opportunities for all children, young people and adults, respecting and valuing diversity, and eliminating all forms of discrimination in and through education. The term inclusion represents a commitment to making preschools, schools, and other education settings, places in which everyone is valued and belongs, and diversity is seen as enriching’.
They produced a short video about why inclusion matters in education:
Advice from the Right to Inclusive Education (General Comment No.4) on the United Nations Convention on the Rights of Persons with Disabilities (2016) is an appropriate starting point for establishing a shared understanding of the importance of inclusion. The following paragraphs from the General Comment are relevant to our work:
‘Historically viewed as welfare recipients, persons with disabilities are now recognized under international law as rights holders with a claim to the right to education without discrimination and on the basis of equal opportunities. (I.1.)
Only inclusive education can provide both quality education and social development for persons with disabilities, and a guarantee of universality and non-discrimination in the right to education. (I.2.)’
What does the term inclusive education mean?
As per the International Guidelines for the Education of Learners with Down Syndrome (see page 4), we agree that:
Inclusive education means ‘that all students attend and are welcomed in their local educational setting and are supported to learn, contribute and participate in all aspects of that context’
Inclusive schooling means ‘all are welcomed by their neighbourhood schools and taught in age-appropriate, regular classes engaging in all aspects of the student life of the school, and all receive support appropriate to their needs’.
We recognise that by using these definitions, special schools and separate special classes are not considered ‘inclusive’, however we do understand that within the current education system in England, Wales and Northern Ireland, that they may be the only suitable option available for some learners. From the discussions we have with families, we understand that unfortunately mainstream education settings do not always appear to be inclusive for learners who have Down’s syndrome. We understand how difficult it is for families to be told that their child is not welcome.
Unfortunately there are too many children and young people who have Down’s syndrome who are being failed by education systems around the world. They are not given the support that they need to succeed in mainstream schools. Therefore we continue to provide support, resources and training opportunities to educators working across a range of settings, to help them develop a more inclusive approach to educating learners who have Down’s syndrome.
We also make direct approaches to Government departments and respond to Government consultations, including the voice of people who have Down’s syndrome in all of our policy work. We are also active members of rights based organisations including the Special Education Consortium and the Council for Disabled Children’s Special Educational Needs and Disabilities Information Organisations Group (SENDIOG), where we are able to make representations on behalf of learners who have Down’s syndrome and where we can work collaboratively with other key partners in the voluntary sector to improve the education system for all learners. The law alone will not change community values, though it does provide protection and direction for those who seek to implement change.
We are committed to providing practical help and support to teachers and others working in education settings, enabling them to feel more informed and confident about welcoming a learner who has Down’s syndrome into their setting. Furthermore, we want educators to know that if they have any questions or concerns that we at the Down’s Syndrome Association are able to help. We believe that greater educational inclusion is possible and are committed to playing our role in supporting educators in their own journeys as they learn more about how to teach and support learners who have Down’s syndrome.
Throughout the project, we will be sharing resources made with and by young adults who have Down’s syndrome so that you can hear about what matters to them in their own words.
Here Isla talks about her experience, as well as things that can help students who have Down’s syndrome.
Useful resources and information about inclusive education approaches
Here are some useful resources, blog posts and videos relating to developing an inclusive education practice that we would like to share with you this week:
Whole school inclusion
Every activity, everyone included
At the Down’s Syndrome Association we start with the assumption that pupils who have Down’s Syndrome can and should be included in every aspect of the school life.
However, sadly we receive far too many calls to our telephone helpline from parents who have been told by their school or an activity provider that their child’s needs mean that they cannot be included.
This week’s theme attempts to address this, by providing information about a pupil’s legal right to be included in all activities, some top tips about how to make activities and trips more accessible, and most importantly lots of success stories which show that with the willingness, commitment and creativity of school staff and activity providers, it is possible to include pupils who have Down’s syndrome in every aspect of school life.
This topic is incredibly important for pupils who have Down’s syndrome.
After all, it is in informal social activities that we really get to know people and make friends. Without these opportunities to socialise with their peers, school can be an isolating experience. Additionally, we know from the stories we hear from Our Voice members and families that it is through inclusion in school activities that many pupils – like all other pupils – find a new passion and some will even go on to achieve great things, for instance competing for their country.
We need to ensure that pupils who have Down’s syndrome are not only included in school and college lessons, but that they too can benefit from all of the wonderful activities that go on before and after lessons. We want to see everyone included in every activity, and we know this is possible to achieve.
The right to inclusion
Since its formation, the Down’s Syndrome Association has worked tirelessly to promote equality for people who have Down’s syndrome. All of our campaigns have at their heart the promotion of equality across different areas of daily life. Children and adults who have Down’s syndrome must be able to enjoy full and equal rights alongside their peers. This includes the opportunity to participate fully in their communities as and when they wish. The legislation that underpins these rights and which provides protection against disability discrimination is the Equality Act 2010. The Act also covers other forms of discrimination such as age, sex, and race. Everyone who has Down’s syndrome is protected by the Act because they have a disability.
All schools have a duty to plan ahead for all disabled pupils. They must produce an accessibility plan stating how they will improve access to the curriculum, the physical environment of the school and to information. Schools have an obligation to advance equality of opportunity and to promote good relations between different groups. Schools also have the power to take positive action in favour of disabled pupils, for instance to encourage participation in particular aspects of school life.
Schools must take reasonable steps to avoid putting pupils who have Down’s syndrome at a significant disadvantage. This is known as the reasonable adjustments duty. What this means is that they can and should do things differently if that is necessary. That could include providing extra help, changing a venue, adapting an activity, providing visual prompts or instructions.
Useful resources and success stories
Inclusion success stories
Meet Jack Hale – Special Olympics Skier
Introducing DSActive tennis
Sam: My experience of sport at school
David and his Taekwondo teacher talk inclusion
Perry and the Charlton Upbeats
Joe: My experience of cheerleading at school
Medical information
School leadership
How to be an empowering leader for every student
At the Down’s Syndrome Association we recognise the important role that education leaders play in developing inclusive settings.
They are responsible for developing the culture of the setting and can be particularly influential on the attitudes and practices of staff. We want to be able to support education leaders to promote inclusive cultures and practices in their setting, developing a strong community commitment to a common purpose of inclusion of all pupils.
It is important that inclusion is not something that is forced on people but that everyone is involved on the journey of becoming more inclusive. It is important that both those in the education setting and the wider community understand and support the setting’s commitment to welcoming all pupils and to delivering a meaningful education to them.
Changing a school culture is not easy.
It is not something that will happen overnight, but we know that effective school leaders can stimulate whole school reform towards inclusive practice, for the benefit of a diverse cohort of learners – including learners who have Down’s syndrome.
We share some useful resources below and more information can also be found in the DSi International Guidelines for the Education of Learners with Down Syndrome (pages 11-18).
Useful resources
Supporting pupils with more complex needs & health conditions in their life journey
The benefits to learners who have Down’s syndrome of an inclusive education have been documented over the last 30 years. The DSA is committed to children and young people having the option to attend local community schools and colleges however complex their needs may be.
We expect every child and young person who has Down’s syndrome to receive an equitable education with the support that both they and their families are entitled to in England, Wales and Northern Ireland. Pupils at school with medical conditions should be properly supported so that they have full access to education, including school trips and physical education. Pupils who have Down’s syndrome alongside long-term and complex medical conditions may require ongoing support, medicines or care while at school to help them manage their condition and keep them well.
Health and social care service providers should therefore be involved at all stages of the Education, Health and Care plan assessment process. Health has an impact on education therefore the plan should fully explain health issues, particularly any additional or complex health conditions, and should be clear how education settings should take these into account. Social care should also be involved, to support the child’s and family’s needs.
At the Down’s Syndrome Association we have a wealth of resources available to help families and educators learn more about conditions that may sit alongside Down’s syndrome. We also hold regular complex needs (including Autism) meetings for parents and carers. The meetings enable parents and specialists to share information and experiences and help to guide our work.
If you have any questions about health issues, you can call DSA’s Helpline (Tel: 0333 1212 300) or email using info@downs-syndrome.org.uk.
If an information officer is unable to answer your question, they can make a referral to the medical adviser at the UK & Ireland Down Syndrome Medical Interest Group (DSMIG).
Find out about the training we have available relating to complex needs and autism.
Please note DSMIG can provide general advice about health issues but they are not able to comment on individual test results. DSMIG are happy to take enquiries from health professionals but they will not take direct from enquiries from families or supporters.
Useful resources
Support for families
Working together
A person needs person-centred planning
Good support is responsive to the needs and wishes of the individual.
The level of engagement a person is able to contribute to planning their support will be different depending on their individual needs.
Some people with complex needs may have family and people who know them well taking the lead in designing their support, based on what they know of the person’s interests, likes and dislikes.
Others who are more able to communicate their needs and aspirations are likely to be able to have more influence over planning their own support.
The Down’s Syndrome Association has produced a helpful resource – Listen to me. There are two versions:
This can be used to help teenagers and young people who have Down’s syndrome to think about what works for them and what they would like for their future (eg education, housing, relationships).
At the Down’s Syndrome Association, we strongly believe that our work should be informed by people who have Down’s syndrome.
People who have Down’s syndrome are experts by experience and they are the people who know what life is like for them.
We listen to what they have to say and we share their stories. We have set up and support ‘Our Voice’ which is a network of hundreds of people who have Down’s syndrome who live in England, Wales and Northern Ireland. Our Voice works on projects, helps to guide our work and tells us what they think about the work we do. We work together to think of new ideas and make resources that people want.
Some members meet weekly and some work on projects in focus groups. Our Voice supports the DSA with making new resources, quality checking our information and co-producing training. Group members work on self-advocacy activities and campaigns.
At the Down’s Syndrome Association we recognise the importance of producing and publishing accessible information for people who have Down’s syndrome.
We often use ‘Easy Read’ communications in our work.
‘Easy read’ refers to the presentation of text in an accessible, easy to understand format. It is often useful for learning disabled people.
Easy Read documents usually combine short simple sentences with clear images alongside which further explain the content. People who have Down’s syndrome tend to be very good visual learners due to their strong visual memory, so this is a very useful way to both communicate information and help learners who have Down’s syndrome to retain information too.
We are grateful to the Our Voice team help us develop Easy Read information on a wide range of topics.
If you would like to involve people who have Down’s syndrome in your own work, a useful website is the Listen Include Respect website, which includes some helpful guidelines.
The Listen Include Respect guidelines help organisations understand what they need to do to make sure people with learning disabilities are included in their work. They were written by Inclusion International and Down Syndrome International. Over 1,500 people with learning disabilities and their families from almost 100 countries helped write them.
A short video is also available to tell you more about these guidelines and how they can be put to work.
Useful resources from the DSA
Ten Top tips for supporting self-advocacy
In this video, Abigail from our Information and Training team, shares ten top tips that will support people who have Down’s syndrome to make choices and get their voice heard.
Useful resources from other sources
Developing an aspirational and inclusive curriculum for all
Learners who have Down’s syndrome have the right to a broad and balanced curriculum, on an equal basis with others. This should not be based on our predictions about what the learner might achieve or be limited to skills that they might need in adulthood. Academic achievement should be expected for all learners with Down syndrome with provision of appropriate learning supports.
An essential feature of establishing an inclusive classroom is to begin with the assumption that all learners can learn, and that they are all welcome and belong. The learner who has Down’s syndrome should be included in all phases of the lesson, including whole class instruction and they should be supported in all activities through planned adjustments.
An important concept in inclusive practice is the teaching of year level curriculum with adjustments, also known as ‘age-appropriate’ curriculum, rather than moving the learner who has Down’s syndrome into younger year groups. Learners who have Down syndrome should move up with their chronological age group to maintain peer relationships and friendship groups, and to progress through the national curriculum with adaptations as required. The classroom should be the primary learning environment, where they should spend the majority of their time in class with their peers.
Following the DSi International Guidelines for the Education of Learners with Down Syndrome, we believe that there needs to be attention to provision of learning adjustments and curriculum differentiation that support the learning of everyone in the class, rather than just a focus on the pupil who has Down’s syndrome. The Guidelines cite Florian (2012:277) who describes:
‘[Effective inclusive education teachers] have changed the way they think about the concept of inclusive education. Rather than only accommodating learner differences, they focus on extending what is available to everybody. This focus on learning as a shared activity is a subtle but important shift in thinking about individual differences between learners that avoids the potentially negative effects of treating some students as different.’
It is therefore important that teachers have enough time to plan their curriculum, to ensure that it is inclusive of all learners in their classroom, including pupils who have Down’s syndrome. Where specific interventions might be beneficial for a learner who has Down’s syndrome (for instance Numicon to support learning numeracy), the interventions are also likely to benefit other learners in the classroom too. It is therefore important to make learning adjustments available to all learners rather than just the learner who has Down’s syndrome. This will also help the learner who has Down’s syndrome feel more included.
We are sharing a range of resources, below, to help you with your curriculum planning.
If you need further assistance, please remember that we offer a range of training and we would be delighted to discuss how we can help you. You can call DSA’s Helpline (Tel: 0333 1212 300, Monday to Friday, 10am to 4pm) or email using info@downs-syndrome.org.uk.
Useful resources
Resources from other organisations
Empower and thrive: charting the course to independence
Putting the young person at the centre
As young people who have Down’s syndrome enter their teenage years, it is important to start planning with them for adult life
This certainly isn’t a one off event – they will need to revisit their plans as they get older and circumstances change.
It is important to start thinking and talking about the future as a family, and to think about how the young person’s education setting can support this. The Year 9/14+ transition/annual review is a good time to begin finding out about what is available (care and support, work, leisure, housing).
It is time to start developing a person-centred plan with the young person and the people who care about them. A person-centred plan is a plan that revolves around the person, what they like and don’t like, and what they want, both now and in the future; this will provide vital information about the wishes and needs of the young person who has Down’s syndrome and the support they will need to achieve them. The plan will develop as they grow into adulthood.
Good support is responsive to the needs and wishes of the individual. The level of engagement a young person is able to contribute to planning their support will be different depending on their individual needs. Some young people may have family and people who know them well taking the lead in designing their support, based on what they know of their interests, likes and dislikes. Others who are more able to communicate their needs and aspirations are likely to be able to have more influence over planning their own plans for the future. Whatever the person’s ability they should be at the centre of the support planning process and as much weight as possible should be given to their wishes.
Decision making post 16
It is important for families to understand the legal framework around decision making for young people once they turn 16. It can come as a surprise to some parents to discover that they do not have the automatic right to make decisions for their older teenagers and adult children with Down’s syndrome.
When a person turns 16, under the Mental Capacity Act (2005), the starting point is to assume they have capacity to make decisions for themselves. The law says a person must be given relevant information in an appropriate format and time to understand it before a decision on their capacity is made. This may mean that over a period of time pictures, symbols, diagrams, videos, sound clips, verbal conversation or other formats that the person normally uses to communicate are used to help the person to understand the options open to them. This is known as supported decision making.
The Mental Capacity Act (2005) states ‘a person’s capacity (or lack of capacity) refers specifically to their capacity to make a particular decision at the time it needs to be made’. This means capacity must be assessed in relation to every decision that needs to be made, at the time it needs to be made. Therefore it is not possible to assess overall capacity and make blanket decisions on a person’s behalf based on the fact that at a particular time they were found not to have capacity.
Never assume that someone does or does not understand and that they can or cannot do something. Have high but realistic expectations. You need to keep re-thinking about what is possible for the young person as they grow and develop. Some days all might go really well, some days they may not be able to do things as well as yesterday and tomorrow they might well do something you didn’t know or think they could do at all.
For more information about decision making we have produced a video ‘Who Decides?’
Useful resources from the DSA
Education and developing independence
Mental capacity
Relationships and sex education
Money
Employment and work experience
Useful resources from other sources
Early years education
Planting the seeds, starting to grow
Education for babies and very young children does not have to mean any kind of formal setting or provision. For children this age, engaging them in activities and enabling them to take a full part in family life is the best start you can give them. Your child will develop through enjoyable opportunities for interacting, moving and playing in their first years of life.
As your baby gets a little older, you may want to explore more structured learning opportunities or opportunities to socialise with other toddlers and pre-school aged children. Most children with Down’s syndrome attend mainstream early years settings with their typically developing peers. This gives them the opportunity to develop social relationships and learn new skills in an inclusive environment.
There is no hard and fast rule about how much extra help your child will need at nursery or pre-school. Some children who have Down’s syndrome manage well within what the setting generally provides; others may need additional support. The setting should work very closely with parents/carers, as they know their child best. It will also be helpful for the setting to get advice from other professionals such as a speech and language therapist or educational psychologist. The local authority may also have early years advisory staff for special educational needs, for example an early years inclusion officer (INCO) or area SENCO (special needs co-ordinator) covering a cluster of early years settings.
Early intervention
All families should receive early intervention services to help guide their child’s development. Although children’s needs vary, families should expect to engage with speech and language therapy, pre-school advisory and physical therapy (physiotherapy and/or occupational therapy) services during their children’s early years.
The DSA is able to offer subsidised speech and language therapy assessments to members of the DSA. Click here to find more information about the service.
Early Years Foundation Stage (EYFS)
The early years foundation stage (EYFS) covers the education of children aged 0-5. It is a statutory framework setting out standards for the learning, development and care of all children 0-5 years old (upto the end of Reception year in school). The guidance must be followed by OFSTED registered childminders, nurseries and pre-schools, to ensure that children learn well, are healthy and are kept safe.
The framework states that Early Years providers must have arrangements in place to support children with SEN or disabilities. There are universal progress checks at age 2 and at the end of Reception Year. Providers have a duty to identify and meet the special educational needs of children with Special Needs and Disabilities.
All schools and early years settings (preschools / nurseries) must provide additional help for children who need it. It is particularly important that early years settings do not delay in making provision for children with SEND. The process for giving additional help is set out in the SEND Code of Practice. Chapter 5 sets out the actions early years providers should take to meet their duties in relation to identifying and supporting all children with special educational needs and disabilities.
If your child needs more help than the setting can provide from their own resources, you should consider asking for a statutory Education, Health and Care Assessment which may lead to an Education Health and Care Plan (in England). If you haven’t done so before, we suggest you start the process at least a year before your child starts school.
If you have any queries about early development or Early Years education, please do not hesitate to contact our Helpline Advisors on 0333 1212300 (10am-4pm) or email info@downs-syndrome.org.uk. We would be delighted to help you.
The DSA has produced several early years resources and also provides training on supporting early development.
We detail some of the resources you might find helpful below:
DSA resources
Other useful links
Ensuring your rights to an inclusive education
Children and adults who have Down’s syndrome must be able to enjoy full and equal rights alongside their peers. This includes the opportunity to participate fully in education and in their local communities as and when they wish.
Two major pieces of legislation you should be aware of in relation to the education of pupils who have Down’s syndrome are the Children & Families Act 2014 (& SEND Code of Practice, 2015) and the Equality Act 2010.
Children and Families Act 2014 (Section 3) and
SEND Code of Practice 2015
All children and young people who have Down’s syndrome will need additional support in school. The amount and type of support will vary according to the needs of the individual child or young person. There is a legal framework to ensure that children get the help they need in education. This is set out in the Children and Families Act 2014 and the associated Code of Practice 2015.
Pupils who have Special Educational Needs may be eligible for:
- SEN support – support given in school, like speech therapy
- an Education, Health and Care (EHC) plan – a plan of care for children and young people aged up to 25 who have more complex needs.
Many children and young people who have Down’s syndrome will need an EHC plan/EHCP. The local authority (LA) is legally responsible for writing the EHCP. Families should however be closely involved in the assessment and planning process. When the EHCP is being finalised, you will be asked to express a preference for a school. The majority of children who have Down’s syndrome are educated in mainstream primary schools and a growing proportion in mainstream secondary. If there are older siblings in the family, your starting point will probably be the school they already go to.
Some things to bear in mind might be:
- Size of the school and suitability of the environment
- Experience of children with SEN generally and Down’s syndrome in particular
- Involvement of class teachers with children with SEN
Most important is an inclusive attitude and willingness to learn and to get to know your child as an individual.
Your child has a general right to mainstream education. The Local Authority must specify a mainstream school unless it is:
- Against the wishes of the parent
- Incompatible with the efficient education of other children.
They cannot refuse mainstream education outright on the grounds of ‘unsuitability’. Also, they must demonstrate that there are no reasonable steps it could take to prevent incompatibility (Code of Practice 9.89).
Equality Act 2010
The law relating to disability discrimination is the Equality Act 2010. In England and Wales the Act applies to all maintained and independent schools, including Academies, and maintained and non-maintained special schools. The Act makes it unlawful for the responsible body of a school to discriminate against, harass or victimise a pupil or potential pupil:
- in relation to admissions,
- in the way it provides education for pupils,
- in the way it provides pupils access to any benefit, facility or service, or
- by excluding a pupil or subjecting them to any other detriment.
All people who have Down’s syndrome will count as people with a disability under the Act. Schools and colleges cannot unlawfully discriminate against pupils because of their sex, race, disability, religion or belief or sexual orientation. The Act defines four kinds of unlawful behaviour – direct discrimination; indirect discrimination; harassment and victimisation.
Schools and colleges are allowed to treat disabled pupils more favourably than non-disabled pupils, and in some cases are required to do so, by making reasonable adjustments to put them on a more level footing with pupils without disabilities. The duty to make reasonable adjustments applies only to disabled people. Where something a school does places a disabled pupil at a disadvantage compared to other pupils then the school must take reasonable steps to try and avoid that disadvantage. Schools will be expected to provide an auxiliary aid or service for a disabled pupil when it would be reasonable to do so and if such an aid would alleviate any substantial disadvantage that the pupil faces in comparison to non-disabled pupils. Many disabled children will have Special Educational Needs and may need auxiliary aids which are necessary as part of their SEN provision; in some circumstances as part of their EHCP. These aids may be provided in the school under the SEN route, in which case there will be no need for the school to provide those aids as part of their reasonable adjustment duty.
Down Syndrome Act 2022
The Down Syndrome Act 2022 guidance is unlikely to include guidance specifically related to education, as the Guidance produced will need to work within the wider SEND legislative framework. This framework is currently under review, with various proposals being tested as part of the Government’s SEND & Alternative Provision Improvement Plan. Until legislative reform happens, ie a change in the Children & Families Act 2014, all of your child/young person’s current rights remain.
The Department for Health & Social Care explained:
‘The main aim of the SEND and alternative provision green paper is to ensure that children and young people with SEND get the right support, in the right place, at the right time. It sets out proposals to improve early intervention, make clearer the support and services everyone (including people with Down’s syndrome) should expect and have funding and accountability systems in place which supports this. In combination, these measures should improve families’ experience of getting support and improve outcomes, as well as making the system more sustainable and resilient.’
For pupils (0-25 years) in Wales, the legislation you need to refer to is the Additional Learning Needs (Wales) Act 2018 and the Additional Learning Needs (ALN) Code 2021. Click here for more information.
Children and young people whose needs cannot be met through universal support in the classroom will have a statutory Individual Development Plan (IDP), which will outline their support needs. An IDP is prepared by schools, colleges or local authorities working with the child, their parents or the young person, as well as professionals (such as health professionals). Their Additional Learning Provision (ALP) will be detailed in this plan. Where necessary, IDPs will include ALP agreed by health services, social services and other services, as well as education. IDPs will contain an action plan that is clear about which agency is responsible for delivering the individual elements. IDPs must be reviewed every twelve months, or sooner if necessary.
All schools and other education settings have an Additional Learning Needs Co-ordinator (ALNCo) and have received training and additional funding to help put in place the new system.
If a child or young person needs ALP in Welsh, this must be documented in the IDP and ‘all reasonable steps’ must be taken to secure the provision in Welsh.
Pupils in Northern Ireland
The law dealing with Special Education in Northern Ireland is contained in the The Education (Northern Ireland) Order 1996 as amended by The Special Educational Needs and Disability (Northern Ireland) Order 2005 (SENDO) and the Special Educational Needs and Disability Act (Northern Ireland) 2016.
You can find the Code of Practice here.
If a mainstream school cannot provide all the help your child needs, the Education Authority (EA) in your region may carry out an assessment to find out what your child’s special educational needs are and how they can be supported. Once the Education Authority (EA) in your region has assessed your child, they can decide to record the information they have in a statement of special educational needs.
A Statement of SEN is a document that sets out the child’s needs and the special help that will be given to help meet those needs. The protection of a statement will be given to children whose needs are such that extra resources, or different resources from those normally available in mainstream schools, must be given by the Education Authority. It is reviewed annually.
As well as their Special educational needs rights, children with disabilities have the right not to be subjected to disability discrimination by the schools in which they are pupils – or to which they are applying to become pupils.
DSA resources
We have provided some useful information and resources about educational rights below. If you need further individual advice about educational rights, please contact us: 0333 1212 300 or Email: info@downs-syndrome.org.uk
Education rights series
Other resources
Other useful links
Wales
Northern Ireland
Approaching and understanding behaviours with care
Behaviour refers to everything that people do. We all react to situations and communicate through our behaviour.
Behaviour can be positive, helpful and useful to the person. However, behaviour can be problematic to the individual or to other people around them. This is sometimes called maladaptive or challenging behaviour. So-called challenging behaviours are often more extreme versions of quite ordinary behaviours. These behaviours may occur for the first time by chance or by imitating others. The person may continue the behaviour because it is reinforced, or useful to them. We call this learned behaviour.
‘Critically, challenging behaviour is not in itself a characteristic of Down syndrome, and the underlying cause or motivation needs to be addressed.’
(Page 9)
For people who have difficulties with other forms of communication, such as pupils who have Down syndrome, behaviour – the things that they do – can be the most effective form of communication. A person who has Down’s syndrome will usually be stronger in receptive language (understanding) than expressive (verbal) language skills. This can lead to frustration when they can understand but are not able to tell people what they need or want.
Expectations around our behaviour change with age and in different settings. For example, it is fine to run around and kick a ball outside in the playground or garden but not in the classroom. A behaviour becomes a problem when it is limiting a person’s life or when it does not match with expectations in a setting, for instance in a school. Perhaps it is preventing them going to places, socialising, learning and forming relationships with other people. It might be causing harm to them or others around them.
An important part of understanding behaviour is to look at the environmental factors and by this we mean more than the physical environment. We need to look at other people and their behaviour including ourselves as a supporter and consider the rules and expectations and whether they are realistic and consistent. A learner’s health, emotional wellbeing, social inclusion, relationships and experiences at home, school and in the community are all important factors to consider.
The diagram that follows shows the many factors that influence our behaviour and that of the people we care for. You will see that some of these are fixed, for example age – but that others can be changed – expectations or others’ behaviour and reactions. These are the ones we need to use in managing, changing and supporting behaviour positively.
It is important to also recognise that ill-health has an impact on learning, so regular health
checks are recommended for children and young people who have Down’s syndrome, as for any child. It is possible that pain responses might result in behavioural changes.
As the DSi Education Guidelines (Page 9) remind us:
‘Even articulate people with Down syndrome are known to have difficulty expressing the extent of their pain and locating it on their body. Those who are close to the individual might notice behavioural changes, e.g. becoming angry or aggressive, or physical changes, such as pallid skin colour. In an education context, if students exhibit challenging behaviour, it could be that they are in pain and unable to communicate their extreme discomfort. In noting the impact of pain on behaviour, it is important to recognise that there may be many contributing factors that manifest in behavioural changes.’
At the DSA, we have produced a guide to Using Positive Behavioural Support (PBS) for people who have Down’s syndrome, which you can download here. PBS is a person-centred way of supporting people who have a learning disability using the principles of behavioural analysis. It is a collaborative approach that involves focussing on all that is positive whilst keeping the learner’s needs at the heart of all discussions, thinking and planning. The child or young person at the centre of this approach is viewed as an individual who is so much more than a problem behaviour.
We also have a range of resources Supporting Behaviour Positively, which provide detailed guidance for supporting a person’s behaviour with practical resources that take them through the steps. The resources are suitable for both parents and professionals supporting children or adults. These can also be found on our site.
Finally, we are also running a training session on 23 November 2023, which you might be interested in attending:
Understanding and supporting behaviour change
(Click the image for more information and to book)
Alternatively, you may be interested in our Pay per View session on Using Positive Behaviour Support for Change if that is more convenient.
If you are looking for further information on how to support a person’s behavior, please call our free Helpline on 0333 1212 300 or email info@downs-syndrome.org.uk
DSA resources
Other resources
Hand in hand – forging bonds and friendships together
Friendships and social relationships are important for all children. Positive social relationships are important to mental health. This is true for everyone, including children and young people who have Down’s syndrome.
Friendships and meaningful relationships with similar-aged peers are important to them in the same way that they are for anyone else. If a learner does not have any friends they can feel isolated and as though they do not belong.
Building new friendships can be a challenge for anyone, but for disabled children and young people there can be additional challenges when creating new friends and navigating relationships.
It is therefore important that you do not assume that learners who have Down’s syndrome do not want to make friends or that they do not have the ability to do so, for instance, because of their developing communication and social skills.
It may just be that they – and importantly their peers – need some additional support in developing those relationships in a way that works for everyone.
Below, we have provided a new resource providing guidance about developing friendships, together with some videos made with Catherine and Molly from Our Voice discussing their experiences, as well as a range of other resources including those that can be used in the classroom to discuss Down’s syndrome.
DSA resources
Bullying resources
Support groups
Supporting children in education settings to learn about Down’s syndrome
Supporting young people in education settings to learn about Down’s syndrome
Other useful links
Inclusive homework – adventures in learning at home
Homework provides learners with opportunities to revisit the work that they have done in school, and for parents to see what is being learned. It can help learners develop positive study habits and to develop independent learning skills. However, for pupils who have Down’s syndrome it can also provide additional challenges.
It is important to link homework to classroom work, and that teachers modify homework to meet the individual learner’s abilities and learning requirements. Homework should be seen as an integral part of learning, rather than an extra piece of work. Homework definitely should not be used as a punishment or penalty for poor performance in the classroom by a learner who has Down’s syndrome or just to catch up on work they have not completed in the dedicated time allocated.
Homework for learners who have Down’s syndrome should be differentiated to ensure that they can be successful in their homework, with minimal support from their parents. Do not assume that parents will be able to dedicate significant amounts of time to supporting their child’s home learning, instead ensure that the work is differentiated and that the instructions are clearly presented, to ensure that the learner who has Down’s syndrome can complete as much as possible on their own. Always start with what you know they can do, to ensure that they can succeed.
Equally, it is important not to assume that the learner has a quiet space for home learning.
Your school or college might also consider providing the pupil who has Down’s syndrome opportunities to attend a homework club so that they can complete their work with support from their regular learning support staff, to reduce the demands placed on the family.
It is important that clear communication channels are put in place with the learner’s parents, to discuss expectations about homework and for them to provide feedback on how the child or young person approached their home learning and what support was provided. Homework can provide a useful opportunity for parents to support pre-teaching (eg of topic vocabulary) or over-learning of content taught in lessons. It also allows for more real-life experiences to be incorporated into learning, for instance visits or taking part in activities instead of just writing about them.
Below is a new resource on inclusive homework.
If you have any specific questions about homework, please contact us at info@downs-syndrome.org.uk or on the Helpline 0333 121 2300 (Monday to Friday, 10am – 4pm) and one of the DSA Information Officers would be only too happy to help you.
Education Otherwise Than At School (EOTAS) and Home education
Education Otherwise Than At School (EOTAS)
NB This resource relates to England only.
Home education
Empowering future inclusive teachers
Inclusive education, which is the practice of welcoming, valuing and supporting the learning of all learners in classroom together, requires teachers who can successfully manage the learning in these settings.
Initial teacher education must therefore prepare teachers for inclusive practice.
Newly qualified teachers must enter the profession with the knowledge, skills and approaches that will enable them to feel confident to teach all their students not just some.
Effective teachers will also engage in career-long professional learning. In the event of being asked to teach a class that includes a learner who has Down syndrome, targeted professional development may be required, depending on previous experience and skills. We know that effective inclusive education is skilled work for teachers and requires a reflective attitude to professional practice, based on a research orientation. It is also important to seek opportunities to gain experience and to experience success working in inclusive classrooms with a diverse student population.
Learners who have Down’s syndrome will each have their individual unique learning requirements and their own interests and abilities. We know that with the right support and opportunities, learners who have Down’s syndrome can thrive in mainstream education settings. However, welcoming a learner within your classroom who has Down’s syndrome can appear to be a daunting uncharted terrain. It is important that educators are trained and supported to become inclusive practitioners with a range of strategies that can be deployed, whilst understanding what it means to be a teacher of a learner who has Down’s syndrome.
We have produced a range of resources in this campaign (scroll further up this page) that will be of use to newly qualified and experienced teachers alike.
We also share some resources for new teachers and those seeking to develop their inclusive practice below:
Useful resources
These guidelines are reproduced with kind permission of Sarah Geiger and the Barnet Down syndrome Leading Edge Group.
Sharing the dream: planning the path ahead
This week as our education campaign draws to a close, we have started to think about transitions – this might be a transition to starting school, a transition from one school to another, or transitioning from education to adulthood and employment or social care.
Whichever transition it is you are planning for, it is important to start early. These processes always take longer than you think, as they tend to involve a wide range of people. Co-ordinating diaries and arranging meetings can take a long time. Ideally someone from the setting you are transitioning from or to will take on the responsibility for co-ordinating the transition process so that the learner who has Down’s syndrome and their parents are not having to co-ordinate the paperwork and meetings.
It is important that children and young people who have Down’s syndrome can be as involved as possible in decision making processes too. Transition goals should reflect their interests, abilities, and hopes for the future. Their individual transition plan should outline specific objectives to help them achieve those goals.
In our resources below, we have attempted to cover a range of transition scenarios, to provide useful tips and strategies for transition planning. If, however, you would like some individual advice, please do not hesitate to contact the DSA Information Team on 0333 121 2300 (10am-4pm) or by email on info@downs-syndrome.org.uk. They would be very happy to help you.
DSA resources
Other helpful resources
Mapping the future together
Developing inclusive education for learners who have Down’s syndrome
Over the last fifteen weeks we have been sharing a range of topics relating to inclusive education practices. We wanted to emphasise the fact that the meaningful inclusion of learners who have Down’s syndrome is not reliant on implementing intervention after intervention, but is often down to an inclusive school leadership, an inclusive and innovative school culture, and relationships – with pupils, with families, with local communities.
We believe that every learner who has Down’s syndrome can benefit from an inclusive mainstream education, but too often we know that schools and families feel that that schools ‘cannot meet needs’.
We have produced a range of resources that demonstrate good practice when it comes to inclusive education, alongside case studies and feedback from people who have Down’s syndrome about what works for them.
As we draw this campaign to a close, we would like to draw your attention to some of the campaign highlights below. And also to ask that you complete our survey, which will inform the next stages of our bigger education project.
If you are an educator who would like to get more involved and contribute to our ongoing work, please feel free to email me at sharon.smith@downs-syndrome.org.uk. I would love to hear from you.
Sharon
DSA Education Advisor