On 28 April, the Down Syndrome Act came into force in England.

It aims to give people with Down syndrome better access to healthcare, housing and education. 

Around 41,000 people in England live with Down syndrome. Across the UK, roughly one in every 1,000 babies is born with the condition.

As such, when the legislation was first announced in June 2021, former defence secretary Liam Fox said it would “ensure that current provision of services is improved, whether provided by health, education or local services, by ensuring that providers give due consideration to those with Down syndrome when designing service provision”.  

It will do this by placing, in law, a duty on local authorities - which includes schools - to ”assess the likely social care needs of persons with Down syndrome and plan provision accordingly”.

Divisions surface

The law was welcomed by many at the time who said it recognised the specific challenges faced by those with Down syndrome and brought laws in place to guide how organisations should meet this.

Among those praising the bill as it progressed through Parliament was Feryal Clark, a Labour MP and a shadow minister for health.

Speaking as the legislation was debated, she said people with Down syndrome and their families “are often reported as struggling to access services such as speech and language therapy, additional support in school and appropriate levels of social care”.

“By ensuring that the relevant authorities - the NHS, schools or local authorities - have the correct guidance, we will have a very real impact on the experience of those living with Down syndrome,” Clark said.

“It is incumbent on all of us as policymakers to ensure that people in this country, regardless of who they are, can live as full lives as possible.”

Others, though, wanted the legislation expanded to cover all types of learning disability, claiming that the law effectively prioritises those with Down over other disabilities.

Dimensions UK, which provides social care services for people with learning disabilities, was among those raising concerns. In a statement published in November last year, as the legislation was unveiled, the charity said an Act that obliges schools to prioritise people with Down syndrome “may lead to other people with learning disabilities being denied the scarce resources available”.

“Our fear is that the rising tide, while floating the Down syndrome boat, may simply sink the other boats around it,” the statement added.

These are important debates that will no doubt continue to be heard. 

What the future heralds 

But for schools, the more pressing requirement is to understand that the Down Syndrome Act is law on the statute books and is something they have to comply with. So, what exactly is required in order for them to adhere to new government guidance?

At present, the picture remains murky, as Esther Maxwell, legal director at law firm Shakespeare Martineau, explains. 

“The Act itself is very short, only a few pages long, and - legally speaking - has limited impact,” she says.

“It requires the secretary of state to give guidance to ‘relevant authorities’ - which includes schools - on steps that it would be appropriate for them to take in order to meet the needs of people with Down syndrome.” 

This guidance should assist schools in providing appropriate support and improving inclusivity for Down syndrome children - something which should already be in place under current statutes, including the Equality Act 2010.

“Currently, there is already significant legislation in place aiming to support those with special educational needs, including those with Down syndrome,” Maxwell explains, citing the Children and Families Act 2014, the Care Act 2014 and the aforementioned Equality Act.

“All these acts already have guidance giving provisions, so it is unclear as to why the secretary of state needed a new Act in order to provide specific guidance for those with Down syndrome,” she says.

Maxwell adds that the Act states only that relevant authorities must have “due regard” to the guidance in the exercise of their functions.

“Having ‘due regard’ is a nebulous concept that does not require schools or other responsible authorities to necessarily implement the guidance - it generally means giving fair consideration and sufficient attention to all of the facts,” she explains.

“Schools may consider training staff on the impact of the new guidance, once it arrives, and review and update their policies. In the meantime, they should continue to seek to comply with their obligations towards children with special educational needs as required under the current legislative framework.”

Margaret Mulholland, SEND (special educational needs and disability) and inclusion specialist at the Association of School and College Leaders, agrees that while the Act highlights the “longstanding gaps” in provision that young people and their families face, it includes “few new powers for changing and improving their experiences”. 

Consultation time

To make the picture even more opaque, the Act only requires ministers to produce guidance. The guidance itself has not yet been finalised and it remains unclear the extent to which it will place a burden on education institutions.

The Department for Health and Social Care is consulting on what the guidance will look like, with details of when that consultation will open have yet to be confirmed, although writing recently, Mr Fox said that he understands “ministers in the Department for Health will announce details of the public consultation soon”.

Mulholland says this is something that needs to happen promptly to build on awareness in the sector about this new requirement.

“Schools and colleges are fully committed to improving education for children and young people with Down syndrome but now need the government to fully back the adoption of the Act with new guidance,” she says.

While this may take a while to work its way through the usual processes, Chris Rees, policy manager at the Down’s Syndrome Association, says the best step for schools to take now is simply to ensure they are aware new requirements will be incoming and think ahead.

“As it stands, schools need to know that they are one of the ‘relevant authorities’ who should be paying due regard to new guidance that will be developed through [the] forthcoming consultation,” he says. 

“For schools, this guidance could be an excellent vehicle for spelling out and reinforcing good practice on how best to support children with their education and the wider engagement they have at school, such as building friendships and engaging in clubs and social activities.

“Once the consultation period is over, it is important that schools become familiar with the educational recommendations made regarding pupils who have Down syndrome.”

What schools want to see

Given that there is a consultation to be held, Rees says schools could seek to influence the contents of the guidance by engaging with the consultation, too.

This is something the Down’s Syndrome Association is actively trying to support by “looking to reach out to schools, settings and education unions…to discuss their views and opinions on how best to support and engage pupils with Down syndrome”.

There’s certainly plenty that school leaders would have to say on the matter.

Paul Gosling, headteacher of Exeter Road Community Primary School in Devon, says he hopes the main messages in the guidance that emerges from the Act will be “broadly the same as for any child with SEND” and enables schools to provide as holistic an education as possible.

“Most families want Down syndrome children to be an inclusive part of any school they attend,” says Gosling, who is also current president of the National Association of Head Teachers.

“So guidance that helps schools to provide the child with access to as much of the usual curriculum as possible would be positive - minimising withdrawal from classes for interventions, as social skill benefits can be lost - as well as extracurricular access, too.”

Any new guidance, he points out, should come hand-in-hand with increased “support and funding” to help schools not only identify the needs of pupils but also meeting those needs.

“Enabling schools to access the expertise and support from relevant external organisations is crucial, especially if the child’s educational needs could be met in a mainstream setting,” he adds.

Mulholland agrees that “more funding to improve and strengthen provision for children and young people with learning disabilities” would be welcome across the sector.

However, as those who work within the education system will know, funding is often in short supply.

What it may include

Aside from funding though, Rees says there are several areas he hopes the resulting advice will address in order to ensure that clear, accessible and accurate information is made available to teachers and school leaders. 

“We expect guidance to be clear on the wide variety of needs and development of individuals who have Down syndrome,” he says.

“This information is currently available in publications and training but may not be readily available in all settings, and we hope the guidance will help with that.”

Rees also wants to see an “evidence-informed review” about characteristics associated with Down syndrome, and recommendations for school leaders and teachers that cover all ages - from early intervention to adult education and lifelong learning. 

“We also want guidance to highlight the importance of physical activity and participation in PE and sports; use of visual supports, including written words; and the role of continuing speech and language therapy for speech clarity and fluency,” he continues.

“The content should not be presented in ways that could lead to unintended consequences - for example, restrictions on curriculum access or inclusion in lessons - or as a result of teachers following prescriptive recommendations that are not right for the individual.”

Given the weight the view of an organisation such as the Down’s Syndrome Association will undoubtedly carry in the consultation, this may provide some clues as to what could end up being included in the guidance.

Fitting it all in

However, Rees acknowledges that even with crystal clear guidance for schools, there are other challenges that could impact its arrival, chiefly the fact that a flurry of other new requirements for schools is also on the horizon.

“It will be developed as we enter a period of wide-reaching reform in education, through both the Schools Bill and the SEND Review,” he says.

“It is important that all legislation, guidance and policy initiatives being developed across the educational landscape over the coming year…will recognise and complement each other effectively, providing clarity rather than confusion.”           

It’s a point that Maxwell makes, too - although she says that while it could make life complicated for school, it could also serve as part of a wider groundswell of improvement to how schools provide for all pupils. 

“This new Act - coupled with the ongoing consultation on the special educational needs and disabilities and alternative provision system in England - will hopefully contribute towards improved outcomes for SEND children both in our education sector and in life generally,” she says. 

Right now, then, there is a lot that remains unknown for schools and leaders.

However, it is clear that new guidance is incoming and will require action, which should - if implemented correctly - have major benefits for children with Down syndrome across a raft of key measures in education.

Chris Parr is a freelance journalist