The Down Syndrome Act 2022 has been quietly making its way through the policy machine since it gained Royal Assent back in April 2022. It included a comprehensive call for evidence that received over 1,500 responses back in autumn 2022.
The Act started life as a Private Members Bill from Dr Liam Fox MP. Unusually for Westminster, the Act managed to attract cross-party support and had very little scrutiny by politicians (though that is not to say it was uncontroversial as we previously reported).
Fast forward to now, and we’ve arrived at the consultation stage for the draft statutory guidance. Yes, another consultation. But before you roll your eyes and mutter about “tick-box exercises,” let’s unpack why this one matters… and why you, your loved one or your professional network should take part.
Why this matters for people who have Down’s syndrome
For families and individuals who have Down’s syndrome, this guidance sets out what services must already do under existing law, what they should be doing unless they’ve got a very good reason not to, and what they could be doing if they want to follow good practice. This is important because it is the first time this has been done all in one place.
In statutory interpretation, ‘must’ is unique as it is the only term consistently recognised in primary or secondary legislation and case law as creating a binding obligation. Anywhere in the guidance where it says must means it is essential to follow, with no exceptions. These legal obligations are not, however, imposed by the Down Syndrome Act but, rather, are existing obligations under other legislation.
To be clear, the Down Syndrome Act 2022 did not create any new rights or funding streams. Instead, it required the Secretary of State to produce a set of statutory guidance that aimed to ensure that public authorities do not overlook the needs of people who have Down’s syndrome when delivering on the duties they already have. Translation: it’s a reminder list for services that sometimes need reminding.
A crucial point in the draft guidance is that relevant authorities are required to “have due regard” to it when exercising their functions. Having ‘due regard’ means giving careful and meaningful consideration to the guidance, weighing up how it can be applied, and documenting both the steps taken and any departures (with reasons). In practice, it’s about showing that services have genuinely thought about the needs of people who have Down’s syndrome (and those with similar conditions/needs) when making decisions and commissioning support and services.
Why this isn’t just about people who have Down’s syndrome
The guidance makes it clear that while it’s framed around Down’s syndrome, it should also improve support for people with other genetic conditions and learning disabilities who have similar needs. That’s around 1.3 million people in England. This follows a commitment made by former MP, Gillian Keegan, in the House of Commons when she was Education Secretary and a similar promise made by Lord Kamal in the House of Lords. Oh, and the little matter of the Equality Act 2010.
“In accordance with the Equality Act 2010 (‘the Equality Act’), people with a disability whose needs overlap with those of people with Down syndrome must benefit from equivalent support to people with Down syndrome, as set out below.”
“It is our expectation that this guidance will help improve support for people with Down syndrome and for those with other conditions and/or a learning disability who have similar needs too.”“Importantly, the DS Act does not require and is not intended to provide enhanced or additional care and treatment for those with Down syndrome over and above other groups of disabled people or people with other conditions and/or a learning disability who have similar needs.
So, if you’re thinking, “This doesn’t apply to me/my child/my students,” think again. The expectation is that existing duties should serve everyone with comparable needs. The Down Syndrome Act isn’t about giving one group special treatment over and above any other.
The question remains as to whether the guidance meets the needs of those with similar needs and conditions. If not, it’s important that those who feel underrepresented respond to the consultation. Otherwise, silence will be taken as agreement.
What’s in the guidance: The seven sections
The draft guidance is structured around seven key areas:
- Accessible and person-centred services
Focuses on reasonable adjustments, communication support, safeguarding, advocacy, and workforce training. It underpins the whole guidance, reminding services that people who have Down’s syndrome must be able to access information and support in ways that work for them. - High-quality and holistic healthcare
Sets out steps for health services to meet developmental and medical needs. This includes timely access to speech and language therapy, monitoring for common health conditions (such as heart issues, hearing and vision impairments, and dementia), and ensuring multidisciplinary care. - Independence through social care
Outlines how local authorities should support care needs, from everyday living to complex support packages. It emphasises independence, choice, and person-centred planning under the Care Act 2014. - Effective education and preparation for adulthood
Covers duties under the Children and Families Act 2014, ensuring SEND provision is tailored to the needs of children and young people who have Down’s syndrome. It highlights preparation for adulthood, transitions, and inclusive education. - Meaningful employment
Encourages local authorities and employers to support access to work, apprenticeships, and supported employment schemes. It stresses the importance of reasonable adjustments and tackling discrimination. - Appropriate housing
Reminds housing authorities of their duties under the Housing Acts, including allocation, homelessness support, and accessible housing provision. It highlights the need for safe, suitable homes that enable independence. - Where to find help and support
Provides routes for families and individuals to seek redress when services fail. This section is particularly important: it clarifies what people can do if they aren’t receiving the support they’re entitled to. Think of it as the “what to do when the system shrugs” chapter.
The Annex: resources and good practice
Don’t overlook the Annex. While the main guidance sets out what authorities must and should do, the Annex is where further practical detail lives. The Annex covers a wide range of areas, mirroring the main guidance chapters. It pulls together resources, case studies, and examples of good practice across healthcare, education, employment, housing, and more.
Because it’s part of the consultation, this is your chance to say whether the examples are useful and whether they reflect real-world needs. It is also a chance to highlight gaps: if something useful isn’t there, this is the moment to say so.
It is currently unclear how the few items listed under each heading have been evaluated and selected. There are many excellent resources, training courses, and best practice/case study examples that are simply missing, for example, those from the Down’s Syndrome Association.
This is your chance to provide feedback on what you think should be included and why. Families, carers, and professionals can help shape the Annex, so it becomes a genuinely helpful toolkit rather than a token appendix. If you only comment on one thing, make it this.
Links to consultation documents
Here’s where you can find the key documents:
- Draft statutory guidance and consultation documents
- Easy Read version
- Call for evidence findings (published, not for consultation)
- Needs profile paper (published, not for consultation)
Why you should respond
The date for the consultation has extended to Monday 30th March 2026, due to the delay in the DHSC publishing the BSL versions. Because they want everyone to have 12 weeks to respond, the consultation has been extended beyond its original 28 January date.
Tips for responding:
- Start with the Easy Read version if the full document feels overwhelming.
- Use your own experiences: real-life examples are gold dust.
- You don’t have to answer every question. You can also use the space provided to provide the feedback you want to provide, even if it does not neatly fit with the question being asked.
- Keep it concise, but don’t be afraid to use all the space provided.
- Remember: politicians and policymakers read these responses. Make yours count.
Yes, consultations can feel like shouting into the void. But this one is a chance to make sure the guidance reflects the messy, complicated reality of life with Down’s syndrome, or another learning disability or genetic condition with similar need for support and services. If the authorities are going to be reminded of what they already must and should do, let’s make sure those reminders are sharp, accurate, and impossible to ignore.
So, grab a cuppa, skim the Easy Read version, and add your voice. Because if you don’t, someone else will, and they might not be telling your story.
A note on terminology: “Down syndrome” and “Down’s syndrome” are both seen as correct. However, at SNJ, aside from referring to the Act, or in a direct quote, our standard usage is Down’s syndrome, taking our steer from the Down’s Syndrome Association. The charity says, “For us…the most important thing is the use of person-first terminology (e.g. ‘person who has Down’s syndrome’, not ‘Down’s syndrome person’). The use of the possessive apostrophe is a recognised model that is used for a number of conditions in Britain, thus, in the UK Down’s syndrome is used more commonly, whereas in other countries the more prominent is Down syndrome.”
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- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms
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- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
- Down Syndrome Act Guidance Consultation: Why you should care (even if you don’t have Down’s syndrome)
- The arts are for everyone: My perspective showcasing the talents of people who have Down syndrome
- A separate Down syndrome school census category is unlikely to improve SEND provision—and may have unintended consequences
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals - September 3, 2026
- From suspicion to support: why the Government’s child protection reforms matter for disabled children - August 28, 2026
- Have your say on the future of transport for disabled children and young people - August 25, 2026
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