Down Syndrome Act: government launches consultation on draft guidance

The Government has launched a consultation on the draft statutory guidance for the Down Syndrome Act, which will advise authorities in health, social care, education, and housing services on how to best cater to the needs of people with Down’s syndrome.

It aims to clarify the support and services these individuals can expect and raise awareness of the condition.

As well as responses from people with Down’s syndrome and their families and/or carers, the consultation also welcomes the views of people with other chromosomal conditions, genetic conditions and/or a learning disability who have similar needs and their families and/or carers.

The Government stresses that this list is not exhaustive, and the aim is to address areas where there are overlaps. It added that it is crucial for services, including commissioners and providers, to consider their entire populations when applying this guidance, so that all people who can benefit from it can do so.

Views are also welcomed by organisations and people who work in healthcare, social care, education or housing services.

Aim of the Down Syndrome Act consultation

The Down Syndrome Act completed its journey through the Houses of Parliament and received Royal Assent on 28 April 2022.

With the commencement of the Act, there is a requirement to publish statutory guidance setting out the steps that relevant authorities in health, social care, education, and housing services should take to meet the specific needs of people with Down’s syndrome in the exercise of their relevant functions.

In a ministerial statement, Dr Zubir Ahmed MP, Parliamentary Under-Secretary of State for Health Innovation and Safety, said that the draft guidance brings important information together in one place to support services to improve life outcomes for people with Down’s syndrome. It also explains the statutory duties for relevant authorities, and supporting documentation provides good practice examples of how those duties can be fulfilled.

He added: “There is estimated to be around 47,000 people in the UK with Down syndrome who, despite existing legal duties and frameworks, often face real challenges accessing services and the right support due to a lack of understanding of their needs and how to meet them. We are determined to set this right.

“The Down Syndrome Act 2022 was introduced with the aim of supporting people with Down syndrome to live full and fulfilling lives through accessing the health and care services they need, receiving the right education, securing living arrangements that work for them, and enabling proper employment opportunities and support.”

There were over 1,500 responses to the call for evidence in 2022 from individuals with lived experience, their families and caregivers, professionals, and organisations.

Barriers for people with Down’s syndrome

Carol Boys, Chief Executive of the Down’s Syndrome Association, said: “‘The Act presents an important opportunity to cement and strengthen the implementation of existing legislation which has evolved over many years to ensure that people who have Down’s syndrome have access to the support they need to live the fulfilling and rewarding lives they deserve. We have welcomed the opportunity to articulate our views and those of our members with the Department of Health and Social Care (DHSC) throughout the process so far.

‘Importantly, the DSA welcomes the fact that the guidance clearly incorporates other people with chromosomal or genetic conditions, whose experiences and needs often intersect with those of people who have Down’s syndrome, and whose rights are of equal importance. This is a point we have expressed to the government throughout the process.

‘Sadly, we know through our work that despite the numerous legislative duties and safeguards already in place, many people who have Down’s syndrome and their families continue to face barriers to accessing the help and support they need. Our evidence shows that issues such as delays in needs assessments, an inconsistent application of legal duties and a lack of specialist workforce expertise persist.

‘The true value of the Act will ultimately rest therefore on how it the guidance is implemented as a tool to support existing legislation. The guidance must translate into meaningful changes in practice, sufficient resources and coordinated services which provide holistic support for every aspect and every stage of a person’s life.”

Policies need to translate into lived improvements

Rachael Ross from the National Down Syndrome Policy Group (NDSPG) said that they welcome the publication of the draft guidance for public consultation and look forward to carefully reviewing it in full with their team and stakeholders.

She added: “This marks an important step towards turning the ambitions of the Act into meaningful change for people who have Down syndrome and their families. We are hopeful that the guidance will raise awareness and provide a strong, practical framework to support consistent delivery of services across education, health, social care, employment and housing. It is essential that it not only reinforces existing legal duties but also highlights good practice, showing what can be achieved when inclusion and collaboration are at the heart of provision.

“That said, the impact will depend on how the guidance is implemented and embedded in everyday practice. True progress will come when policies translate into lived improvements, when people see timely support, joined-up services, and professionals who understand and respond effectively to their needs.”

The consultation is open for 12 weeks and will close at 11:59pm on 28 January 2026.

*The Act and consultation use Down syndrome, whereas the NHS mainly uses Down’s syndrome. Both terms are used in this article.

Alison Bloomer

Alison Bloomer is Editor of Learning Disability Today.

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