SEN0526
The Down's Syndrome Association (DSA) is a national charity and membership organisation focusing on all aspects of life for people who have Down’s syndrome. We have over 50 years’ experience of supporting people who have Down’s syndrome, their families, carers and professionals working with them, providing a wide range of information, advocacy and training, as well as a free helpline. We have around 20,000 members throughout England, Wales and Northern Ireland. We also provide direct support to 70 affiliated local support groups, and a range of professionals from different agencies, including education.
Our overarching aim is to help people who have Down’s syndrome lead full and rewarding lives. We have a commitment to inclusive participation and work closely with a diverse group of individuals who have Down’s syndrome called “Our Voice”, who come together regularly to help shape and inform our work. We are well placed to reflect the needs and views of people we seek to serve.
We are members of the Special Education Consortium (SEC). This response is in addition to the response submitted by SEC.
We would be happy to provide oral evidence to this inquiry.
About Down’s syndrome
Down’s syndrome is a genetic condition, caused by the presence of an extra chromosome 21 in the body’s cells. People who have Down’s syndrome will have some level of learning disability. This means they will have a range of abilities. Some people will be more independent and do things like get a job. Other people might need more regular care.
We estimate there to be around 40,000 individuals living in the UK who have Down’s syndrome.
As per the DSi International Guidelines for the Education of Learners with Down Syndrome https://ds-int.org/education-guidelines/ we understand inclusive education to be where all learners attend and are welcome in their local educational setting and are supported to learn, contribute and participate in all aspects of the setting. Learners are taught in age-appropriate classes and receive support appropriate to their individual learning needs.
Once reaching school age, it is likely that all learners who have Down’s syndrome will have an EHCP. Some young children may be receiving SEN Support in Early Years education, prior to a request for an EHC Needs Assessment.
In theory we would support SEN support being put on a statutory footing, to enable learners to have a legal right to access to Early Intervention services, therapy provision and professional input. However, there is a lack of clarity about what SEN Support means and how it relates to Ordinarily Available Provision. This would need clarification first.
The connection between SEN Support and the Equality Act 2010 must be clarified, ensuring schools understand their obligations under this legislation.
It is important that there are high expectations for all learners, including those who have Down’s syndrome. Through our WorkFit programme, we know that employment is a realistic option for many individuals who have Down syndrome and yet careers advice and work experience opportunities are often limited.
It is necessary for there to be a range of pathways for learners who have Down’s syndrome, improved progress monitoring (that is not based on deficits/closing the ‘gap’), and differentiated assessment processes, to allow learners to progress.
There needs to be closer working with families and information delivered through school for parents about what should happen at key transition points eg. secondary, PfA, post-16/post-19 options, with person centred planning processes in place, to encourage active pursuit of opportunities that specifically suit the learner's individual interests and aspirations.
The training and development of skilled teachers for all learners is crucial. There has been a long-standing call for better initial and ongoing training for school staff, specifically focusing on a range of issues related to learners with SEND. Greater emphasis should be placed on providing teachers with the necessary training, resources, and support to effectively adapt and meet the needs of all learners with SEND in their classes and to determine what should be taught at any given age to help each individual learner achieve and progress.
Teacher training and ongoing professional development should reinforce that learners with Down’s syndrome can be taught the curriculum for their year group, with necessary adjustments to engage with learning outcomes. Schools and colleges should be knowledgeable about and capable of implementing strategies to promote learning for the varied needs of learners with Down’s syndrome. These strategies and curriculum modifications should be part of the teachers’ toolkit for educating any learner with similar additional needs.
All teachers should understand how to support the behaviour of students with learning disabilities. For people who have difficulties with other forms of communication, such as pupils who have Down syndrome, behaviour 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.
It is important that those working in education know how to access condition-specific training and support, so that they can include all learners in their classroom. The DSA offers a range of education resources and training for educators https://www.downs-syndrome.org.uk/wp-content/uploads/2024/01/Downs-Syndrome-Resources-for-Education-01.24-.pdf.
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. The benefits to learners who have Down’s syndrome of an inclusive education have been documented over the last 30 years. More recently, calls to our helpline indicate that progressive attitudes to inclusive education have stalled and may have reversed. Many families are now being presented with ‘problems’ that with adequate training, attitude and resourcing would be easily solvable. We believe this reflects the lack of training on inclusive practice for trainee teachers as well as resource issues for schools. Learners who have Down’s syndrome therefore currently attend both mainstream and specialist settings – often not determined on the specific needs of a child, but on factors such as parental preference or resistance from settings leading to parents being compelled to select a setting not of their choice.
Learners who have Down’s syndrome need additional support for optimal learning in all types of schools. They will achieve most when they have access to 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 welcomed, 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.
We are concerned about the swift increase in the use of school Resource Bases/Units, without an appropriate evidence base, statutory guidance and accountability measures. The growth appears to be driven more by local authorities' financial constraints than by the actual needs of disabled children. We are concerned about learners who have Down’s syndrome who seldom interact with their mainstream peers and who have very limited access to subject specialist teachers. Whilst recognising the potential benefits of RPs, eg smaller class sizes, access to therapy provision, we believe there needs to be an urgent enquiry into how these provisions are being used and the impact on learners’ inclusion and outcomes.
We suggest that for learners who have Down’s syndrome and other similar conditions, where it is almost certain that an EHCP will be required, there is an option to fast-track the EHCP process, avoiding the first 6-week period where the local authority is deciding whether to assess. It is our opinion that all learners who have Down’s syndrome would meet the current criteria for an EHC Needs Assessment and therefore should be assessed for an EHCP from the earliest years in education.
It is necessary for the EHCP process to be based on person centred planning principles, and the process needs to be more inclusive/accessible, with reasonable adjustments in place for families and learners who need them (eg Easy Read, alternative communication, additional time).
There needs to be greater accountability/enforcement of legislative duties. We continue to hear from families about problems that they are facing where local authorities have failed to meet their statutory timescales and obligations. Parents should not be required to hold local authorities to account.
We recommend the deployment of Independent Supporters to assist families before, during and after the EHC Needs assessment process (as seen during the transition to EHCPS 2014-18).
Most conflict arises from a lack of compliance with the law, and families needing to hold professionals to account. Accountability measures need to be enhanced, to ensure that compliance is the norm.
We suggest that there should be a separate assessment body and funding body, to ensure that assessments are truly person-centred and needs-based, rather than based on what local provision is available.
We are aware that SEN provision often depends on which local authority area families live in. Some areas operate blanket policies relating to provision, or place barriers in the way of EHC Needs assessments which are not compliant with law. This relies on families being knowledgeable about the legal framework and having support from organisations such as the DSA to support them in ensuring appropriate support is in place for their child/young person.
It is important that learners who have Down’s syndrome are provided with effective therapy provision that is based on both the clinical evaluation of each individual, and also the specialist knowledge of how any significant needs relating to the learner’s specific diagnosis (such as autism, Down’s syndrome, apraxia of speech, etc) should be understood and addressed. Specialist therapists must be aware of the typical profile of strengths and challenges associated with a diagnosis, the impact of other conditions (e.g. hearing, vision, medical) associated with it, and which evidence-based interventions are best applied, for therapy to be most effective. Therapy provision should not be based on blanket policies.
Families frequently report a lack of social care input in EHC Needs assessments and transition planning. There should be a requirement for social care input to all EHCPs for disabled learners, including those who have Down’s syndrome. If unknown to social care, the EHC Needs assessment request should trigger a disabled children’s social care assessment.
It should be mandatory for a social care professional to engage in the Year 9 EHCP annual review process, with a view to starting transition planning and ensuring learners are aware of future options for support.
It is essential that the curriculum and assessment processes and qualifications/pathways can meet the needs of all learners as its starting point, rather than being designed for the majority and then significant adaptations having to be made subsequently for some learners, as an ‘add on’. This should help reduce the number of specific interventions or adjustments required for individual pupils, improving the experience for everyone
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.
Individual interventions or adaptations to the curriculum must not place an emphasis on ‘remediating perceived deficits in the child’ but should promote development and the learner’s inclusion in the education setting, rather than attempting to fix the learner or ‘close the gap’ with typically developing peers. Effective interventions are evidence-informed and ideally will take place within the classroom, alongside or with peers rather than in a separate learning space. Time outside of the classroom should be minimised, to avoid pupils missing out on curriculum teaching, and individual targets should be woven into lessons by the class teacher.
We would urge the Committee to consider our response to the Curriculum and Assessment Review for further details of our recommendations for learners who have Down’s syndrome.
We know from engagement with families that there are key transitions where learners who have Down’s syndrome will move from mainstream to specialist provision, including the move to KS2, Year 5, the move to KS3 and post-16 provision. This can be despite successful inclusion in mainstream education to that point.
Families are frequently told by schools that they cannot ‘meet need’ and that they should consider specialist provision. We strongly believe that if the individual learner’s EHCP accurately reflected their education, health and care needs, and adequate provision is made accordingly, then a mainstream school can and should be possible.
At transition points, parents tell us that decisions on which type of school their child should attend can be based on:
We often hear from schools that they often lack confidence in managing challenging behaviours that arise. Suitable training, strategies and support should be made available to schools to support pupils who have Down’s syndrome who are displaying challenging behaviours.
Many learners who have Down’s syndrome will have associated health needs, which will impact on their education, for example vision impairments and hearing loss are common, as are speech and language impairments and delayed motor skill development. The impact of health conditions will vary between individuals. More information about the health needs of people who have Down’s syndrome is available in DSi International Guidelines for the Education of Learners with Down Syndrome https://ds-int.org/education-guidelines/ and our website https://www.downs-syndrome.org.uk/about-downs-syndrome/health-and-wellbeing/.
It is important that any health provision that educates or trains continues to be recognised as Special Education Provision and is retained in Section F of the EHCP.
Post-secondary education should be available to learners who have Down’s syndrome, should they wish to pursue further study. Required adjustments and supports should be provided as for other levels of education. During secondary school, learners who have Down’s syndrome need to be provided with information and expectations that tertiary/Post16 education exists and what options are available for them.
Learners who have Down’s syndrome are often provided with limited options in Key Stage Four and beyond. There needs to be a curriculum and a range of pathways that are flexible enough to address the needs and interests of a wide range of learners, but does not come with low levels of aspiration, where simply being in a class and doing ‘something’ is enough (we have heard of cases of students who have Down’s syndrome at post-16 level being provided with colouring as an academic task).
Employment and independent living are stated goals for many people with learning disabilities, however, the value of learning for its own sake about topics of interest is respected by the general community and should not be discounted for people who have Down’s syndrome. The curriculum needs to be broad enough to allow learners to engage in study that interests them.
Due to the lack of choice and aspiration locally, or to support a young person to develop independence skills and confidence away from the family in a safe way, some families will opt for their young person to attend a specialist residential college that provides vocational courses and lifeskills support that are not available locally. There are limited spaces in these colleges, and not every young person wants to move out of the family home. It is important that the opportunities provided by specialist residential colleges is extended into local areas, eg local residential opportunities, travel training programmes, a range of work experience and care/support to engage in the community. Multi-disciplinary teams should therefore be involved in commissioning a greater range of local provision to support learners who have Down’s syndrome as they progress towards and throughout post-16 education, for those who are not attending specialist residential placements.
The journey to work for learners who have Down’s syndrome must start at school and/or college. The curriculum should be based on high-aspirations and must include a focus on employability including talking to students about career options as early as possible, and certainly no later than Year 9. Families tell us that support in formal training/preparation for work is few and far between. There must be a stronger and more meaningful focus on better careers advice and guidance, specifically designed to meet the needs of learning-disabled learners who may be headed for part-time, supported or voluntary work as well as full-time paid work. Schools should source high quality and well supported work experience placements and taster sessions beyond the traditional sectors of retail, catering and hospitality and support this with job coaches. We have extensive experience of supporting adults who have Down’s syndrome to find work through our WorkFit scheme and are launching a new service DSA Futures to support learners who have Down’s syndrome to progress towards adulthood, including employment. We would be happy to discuss this further.
Some young people who have Down’s syndrome will be able to attain GCSEs or vocational qualifications. However, many students who have Down’s syndrome will be refused access to GSCE courses as they are seen as not meeting the GCSE entry criteria, and/or schools are reluctant to enter them as their results will have a ‘negative’ impact on the school's results. This limits the options and pathways available to young people in further education, as colleges will often have GSCE based admission criteria for all courses other than Foundation Studies/Lifeskills.
It is important to develop a range of accessible pathways with high aspirations for all learners, which would allow learners who have Down’s syndrome access to courses that are of interest to them, with a range of qualifications and accreditation also made available.
January 2025