A separate Down syndrome school census category is unlikely to improve SEND provision—and may have unintended consequences

On Friday, we wrote about the Department for Education announcing a new phase to its short breaks innovation programme and extending supported internships. The announcement also briefly included plans to add Down syndrome as a separate category in the school census:

Going even further, we will also be collecting new data about the numbers of children with Down syndrome and where they are educated through changes to the School Census. This helps meet our commitment to improving the life outcomes and opportunities for people with Down syndrome, to identify good practice and shape long term services. This follows on from the Down Syndrome Act 2022 aiming to raise the understanding and awareness of the specific needs of people with Down syndrome.

Department for Education

This should come as no surprise to anyone, as Dr Liam Fox MP asked for this in the House of Commons debate last year:  

Why? Because there is currently no Down syndrome-specific school data available, including numbers, location, or educational settings, because individuals with Down syndrome are included only in the general special educational needs and disability school numbers.

Dr Liam Fox MP

Many supporters of Dr Fox and the Down Syndrome Act 2022, which originated from his Private Members Bill (PMB), see this as a huge ‘win’ for people who have Down syndrome. It has been suggested that this move will improve outcomes for people who have Down syndrome in all areas, including giving them more chances in life. Further, it will lead to teachers being more able to adapt teaching and resources, it will give information about how children with Down syndrome learn best and it will allow them to have their value and potential recognised. But is this really the case? Can the addition of a category on a census achieve all of this?

As you have come to expect at Special Needs Jungle, we don’t take things at face value - even if it looks, at first glance, to be a “good thing”. So today, we’re unpicking some of the potential issues with this latest announcement. First, however, we will give a brief overview of the Down Syndrome Act 2022, and the school census.

About the Down Syndrome Act 2022

Following cross-party support of Dr Liam Fox MP’s PMB, the Down Syndrome Act received Royal Assent on 28 April 2022. Aspirations following this new legislation are wide-ranging. Gillian Keegan MP stated that,

Although there are already legal duties and frameworks in place to ensure that services are tailored to people’s needs, we have heard that people with Down’s syndrome and their families often find it difficult to access the right support…. We need to raise awareness of the unique needs of people with Down’s syndrome and how they can be met.

Gillian Keegan MP, Secretary of State for Education

As we’ve previously previously reported, the actual legislative content of the Act is fairly limited. It requires the Secretary of State (SoS) to produce guidance for ‘relevant authorities,’ explaining the appropriate steps needed to support people who have Down syndrome, in the exercise of their ‘relevant functions’. These relevant authorities must have “due regard” to the guidance. It is important to note that these relevant authorities do not include local authorities, therefore their role in the EHCP process does not fall within this guidance. The Down’s Syndrome Association and Steve Broach KC, have provided more information on this here.

Creating the DS Act Guidance

The SoS was required to ‘consult such persons as considered appropriate’ in preparing the guidance. In October 2022, the Department for Health and Social Care (DHSC) launched a ‘call for evidence’ to inform the development of the Down Syndrome Act statutory guidance. Since then, despite the Act receiving Royal Assent almost two years ago, we have heard very little about progress towards its aspirations. Importantly, this ‘call for evidence’ specifically excluded detailed information about education and children’s social care. Instead, it stated that, in the light of ongoing children’s social care and the wider SEND and Alternative Provision (AP) reforms, ‘we have not included detailed questions about education and children’s social care in this call for evidence.’

SNJ has covered this new legislation previously, including the concerns that the Act and Guidance might suggest a ‘hierarchy of disability’ that inadvertently “privileges” people with one genetic condition over another, and that guidance alone is unlikely to lead to transformative change.

The guidance is still not available for public consultation, and there has been a lack of transparency about how the guidance is being developed. However, we’re pleased to hear that the Down’s Syndrome Association are involved and working with the team at DHSC who are producing the guidance, no doubt drawing on their 50 years’ experience of supporting individuals who have Down syndrome in these discussions.

So, what about the school census announcement?

You would be forgiven for not knowing what the school census is or how is it used. Every school in England has a statutory duty to complete the school census each term. The census collects information like pupils’ background details, special educational needs, free school meals eligibility, as well as educational history. It also collects data on absence, exclusions and their reasons, indicators of armed forces or children in care. The data creates a "lifetime school record" of characteristics, testing and tracking to form a single longitudinal record over time.

On census day, the school needs to complete a return for all pupils on their register on that day, plus others such as pupils who are suspended or excluded. Schools do not need parental or pupil consent to provide information for the census. In England, all of the following schools are required to provide the information collected in this census to DfE:

  • maintained nursery
  • primary
  • middle-deemed primary
  • middle-deemed secondary
  • secondary
  • all-through
  • special schools (including non-maintained special schools)
  • pupil referral units / alternative provision schools (PRU / AP)
  • academy schools (including free schools, university technical colleges (UTCs) and studio schools)
  • city technology colleges (CTCs)

The data provided in the autumn census return impacts the funding that goes to local authorities for their maintained schools, and the funding that goes directly to academies. The data is also published online. For example, see the headline data for 2022/23 here. Special educational needs data is also published, which relies on the school census, for example the 2023 update that we wrote about here. This provides data on the type of ‘need’, in relation to other data such as type of school, age, gender, ethnicity, language and secondary need.  

So, is this change to the school census likely to benefit pupils who have Down syndrome? Let’s look at what data can and cannot do, and how similar laws have improved the rights of disabled children

1. Can new statistics alone be helpful? Probably not!

The addition of Down syndrome to the school census is seen by MPs to be ‘a move that will provide greater support to the educational needs of those with Down syndrome’ (Dr Liam Fox MP) and ‘will make a real difference in the years to come in enabling people with Down’s syndrome to live full and independent lives’ through ‘creating an environment where every child across the country, regardless of their abilities, can thrive’ (Gillian Keegan MP).

However, on its own, the data produced by the school census:

  • does not provide any information about the educational progress this group of pupils are making
  • does not help anyone better understand their experiences of the education system or how included they’ve been.
  • does not change the environment in which pupils who have Down syndrome are being educated
  • and it certainly does not lead automatically to greater support

Statistics can suggest areas of concern to be explored and addressed, such as the vast number of pupils who have Down syndrome who move from mainstream primary into specialist provision at Year 5, or at the phase transfer to secondary education. However, the data alone cannot tell you why this is happening. Neither will it necessarily mean new funding, or mean that LAs break the law less often, or make mainstream schools more willing and able to include pupils who have Down syndrome in a meaningful way.

There needs to be the additional desire to delve deeper and do something about the challenges currently facing pupils who have Down syndrome and their families, both locally and nationally. But can we really believe the political will is there to go the extra distance? Given that the DfE already has access to a plethora of data, including soaring SENDIST tribunal appeals, the SEND crisis still fails to be addressed in any meaningful way, despite the current Change Programme, .

As the Down’s Syndrome Association stated in their response to the addition of Down syndrome in the census:

There are also numerous examples from other areas of the system which continue to provide us with clear data demonstrating deeply problematic processes such as the huge increase in appeals and cases found in favour of parents at the SEND Tribunal, and the appalling school exclusion rates which have shown children with SEND being disproportionately affected over many years. Data has been used to identify these problems, but actions have yet to take place to resolve them.

Down Syndrome Association

Autism has been listed on the school census for some time now, and we have not seen transformative improvements for autistic pupils, so why should it be any different for pupils who have Down syndrome? Let’s not get our hopes up!

2. Is there something ‘unique’ about the way educators need to approach teaching pupils who have Down syndrome?

Proponents of the Down Syndrome Act 2022 believe there is. They are pushing the idea of a ‘unique learning profile’ that accompanies a diagnosis of Down syndrome, suggesting this should come before any assessment of the pupil’s individual abilities and needs. They argue this learning profile does not vary, only levels of cognitive ability do.

It’s hard to find any empirical evidence underpinning such claims, especially given the huge range of abilities, interests, challenges and broader socio-economic and cultural influences that will impact on individual capacity to learn. As the saying goes, if you meet one person who has Down syndrome, you have met one person who has Down syndrome! There are numerous variations within Down Syndrome (Trisomy 21, Mosaic, Translocation), but even within those who have Trisomy 21, there is a huge range of abilities, additional diagnoses, or additional impairments. Some children who have Down syndrome are non-verbal and rely on alternative communication, whereas some will be able to have full conversations. Some may have significant hearing or visual impairment or additional health concerns, whereas others may not. There is a real risk that standardising any approach in education will overlook the need for individual assessment and provision based on that assessment.

It’s important that the needs of children with Down syndrome are individually assessed so that the right level and type of provision can be put in place, rather than making assumptions based solely on diagnosis of Down syndrome. This allows learning to be differentiated to the right level and progress to be carefully tracked, which is particularly key as children diverge from the standard mainstream assessment pathway. Failure to carefully identify individual needs in spiky profiles can contribute to low expectations and limited progress. While it’s positive to share experiences of approaches that have worked it’s also important to acknowledge that children with Down syndrome can have very different needs from one another.

In a context of diminishing resources (particularly for those local authorities under the safety valve and delivering better value programmes) and a shortage of specialist support services there is risk that a diagnosis-led approach could result in a generic, standardised offer with provision rationed according to availability rather than need. Children with Down syndrome are already having provision such as speech and language therapy, occupational therapy and physiotherapy refused or limited on the basis that their development is in line with a diagnosis (or “profile”) of Down syndrome. There is also a contrary risk that a diagnosis-led approach could result in the needs of children with Down syndrome being privileged over those of children with similar or greater needs when it comes to allocating provision. A particular diagnosis should neither privilege nor disadvantage any child. Under existing legislation disabled children have the right to an assessment of their individual needs and that’s exactly as it should be.

Gillian Doherty, SEND Action, mother of a young person who has Down syndrome.

3. Why just Down syndrome?

Following the announcement about the census, parents of learning disabled children who don’t have Down syndrome were rightly asking questions about whether their child’s condition would be added to the school census too, and if not, why not?

The concerns that Dr Fox and Gillian Keegan have raised about children and young people who have Down syndrome are faced by many thousands of pupils with other disabilities. We have a SEND system that is systematically failing thousands and thousands of pupils. So it’s really important to ask: what about them?

While recognising Down syndrome is the most common genetic condition, this doesn’t mean they should be prioritised in planning or funding over and above other pupils, many of whom may have more complex needs. Even though I have a daughter of my own who has DS, this still feels incredibly discriminatory and unfair.

Furthermore, policy and data relating to a single impairment or diagnosis flies in the face of disability activism based on a collective struggle for improved rights and inclusion. To improve the services and support for all disabled people, it’s important to work together, not in silos. This is especially important for learning disabled people, including those who have Down syndrome, who so often are seen to have no voice.

4. Will it improve inclusion?

There is a real danger that using school census data to push the narrative of a ‘unique learning profile’, together with requirements for specific interventions and training, will actually lead to greater exclusion of pupils who have Down syndrome. When diagnosis becomes the primary factor in addressing how to educate a pupil, this both undermines the professional skill and experience of the education workforce and may lead to more teachers and school leaders believing they need additional diagnosis-specific training, telling parents they don’t have the skills and knowledge to meet these ‘specific needs’. Additionally, it is likely to lead to the pupil being outside of the classroom for greater parts of the school day so that they can receive their reading intervention, their maths intervention and their therapy provision, all of which is likely to be delivered by a Teaching Assistant rather than the class teacher.

5. The context

As the Down Syndrome Act Call for Evidence pointed out, the guidance and any other changes to education policy and practice will need to be enacted within the current education legislation and the SEND & AP Improvement plan. The SEND system is in crisis, schools are underfunded, teachers are stretched and local authorities across the country are engaged in the Safety Valve and Delivering Better Value programmes, aimed at reducing deficits to avoid impending bankruptcy. It is hard to see how, against this backdrop, counting the number of pupils on schools’ registers is going to deliver any meaningful difference at all. Indeed, in this context, the focus on a generic Down syndrome learning profile may well backfire massively, removing provision that has already been fought for based on individual needs for support

The SEND & AP Improvement plan is underpinned by the need for ‘consistency across the country’ to remove post-code lotteries. LAs will offer tailored lists of “suitable” schools for parents to choose from—before they’ve checked if the schools can support the child’s individual EHCP. A generic learning profile and specific needs for pupils who have Down syndrome in combination with these planned initiatives could risk LAs making (unlawful) blanket policies based on diagnosis, not individual assessed needs. If every child who has DS is seen to have the same homogenous learning profile and needs, it may lead to standard levels of provision that fail to meet the needs of anyone.

So, what now?

The Down syndrome data collection won’t dtart until January 2025. Given that school census data is used to identify trends over periods of time, the impact of this purported ‘win’ won’t come anytime soon. If, indeed, it has any impact at all. In the short term, we await the consultation on the Down Syndrome Act guidance, with which I urge everyone to engage. Until then, it remains uncertain whether anything positive will come out of this announcement at all.

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Sharon Smith

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