Open consultation

Equality impact assessment - Down Syndrome Act 2022: draft statutory guidance

Published 5 November 2025

Applies to England

Introduction

The general equality duty that is set out in the Equality Act 2010 requires public authorities, in the exercise of their functions, to have due regard to the need to:

• eliminate unlawful discrimination, harassment and victimisation and other conduct prohibited by the act
• advance equality of opportunity between people who share a protected characteristic and those who do not
• foster good relations between people who share a protected characteristic and those who do not

The general equality duty does not specify how public authorities should analyse the effect of their existing and new policies and practices on equality, but doing so is an important part of complying with the general equality duty.

Summary of guidance

The Down Syndrome Act 2022 (‘the DS Act’) received Royal Assent in April 2022 and was formally commenced on 18 March 2024 by way of regulations. The DS Act imposes a duty on the Secretary of State for Health and Social Care to consult on and give statutory guidance to relevant authorities in health, social care, education and housing services regarding the steps that are considered appropriate for them to take to support the needs of people with Down syndrome.

The guidance will not introduce any new policies or legislation, nor does it create any new functions for relevant authorities or alter any of their existing functions. Rather, it will bring together existing legal duties and frameworks in one place. These are the steps that are considered appropriate for relevant authorities to take to meet the specific needs of people with Down syndrome, and therefore, this is guidance given under the DS Act. Relevant authorities have a duty to have due regard to the guidance (once it is published).

Intended aims

The DS Act aims to improve the lives of people with Down syndrome by improving their access to services. The guidance will set out practical steps that organisations should take to meet the needs of people with Down syndrome. It will also help to clarify the help and services people with Down syndrome can expect to receive.

Although there are already legal duties and frameworks in place, people with Down syndrome and their families and/or carers often find it difficult to access the right support. The guidance will raise awareness of the specific needs of people with Down syndrome and bring together in one place everything that relevant authorities must or should already be doing to support them.

The DS Act seeks to ensure that relevant authorities take account of the specific needs of people with Down syndrome when planning, designing and providing services to ensure these needs are not overlooked. It does not permit or require, and is not intended to result in, enhanced or additional services, care or treatment for those with Down syndrome over and above other disabled people or those with other conditions and/or a learning disability who have similar needs. In accordance with the Equality Act 2010, people with other chromosomal conditions, genetic conditions and/or a learning disability (who qualify as people with a disability under that act) must benefit from equivalent support to people with Down syndrome.

Effect on relevant authorities and other organisations

The guidance will be issued for health, social care, education and housing authorities in England, referred to as ‘relevant authorities’ in the schedule to the DS Act, which will have a duty to have due regard to the guidance in the exercise of their relevant functions, once it is published. The DS Act does not create any new functions for relevant authorities beyond this duty.

The guidance will set out practical steps that organisations should take to meet the needs of people with Down syndrome. The guidance will raise awareness of the specific needs of people with Down syndrome and bring together in one place everything that relevant authorities must and should already be doing to support them. This is intended to make it easier for relevant authorities to understand what support they can provide to people with Down syndrome.

The guidance will not be statutory guidance for those not specified in the schedule to the DS Act, which means that persons who are not ‘relevant authorities’ are not under the obligation to have due regard to the guidance. However, the guidance will nonetheless be beneficial for others in carrying out their duties.

Effect on people with Down syndrome and their families and/or carers

The DS Act aims to improve the lives of people with Down syndrome by improving their access to services. The guidance will help to clarify the help and services people with Down syndrome can expect to receive.

Effect on people with other chromosomal conditions, genetic conditions and/or a learning disability

The draft guidance includes references to where the guidance could have wider benefit - including for people with other conditions (such as other chromosomal or genetic conditions) and/or a learning disability who have similar needs to those with Down syndrome. It is our expectation that the 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.

Evidence

While there is academic evidence on the needs of people with Down syndrome, there remains limited evidence on the lived experience of people with Down syndrome, particularly with regards to service provision by education, health and social care public bodies. Evidence on how lived experiences vary by protected characteristics among people with Down syndrome, and people with a learning disability more generally, is also limited.

Evidence, where available, has been largely drawn from academic studies. A needs profile paper summarising our evidence base has also been developed to support the production of the guidance and is published alongside this consultation. The needs profile paper reflects what was raised about the potential needs of people with Down syndrome through the DS Act 2022 guidance: call for evidence and subsequent stakeholder engagement. The paper includes over 500 references to academic papers. These academic papers categorise the health, education, development, social care and housing needs that people with Down syndrome may experience.

The needs profile paper also includes academic evidence where the call for evidence findings and further engagement indicated overlapping need between people with Down syndrome and people with other chromosomal conditions, genetic conditions and/or a learning disability (to note, the academic evidence included is not exhaustive).

In addition, the Department for Education (DfE) published Special educational needs in England: academic year 2024 to 2025 on 12 June 2025. The Down syndrome statistics included in the DfE publication were considered when producing this equality impact assessment, and it was agreed that they do not present any findings that contradict the conclusion set out in this equality impact assessment.

Analysis of impacts

Age 

Evidence shows that people with Down syndrome are living longer than before - average life expectancy is now around 60 years (see reference 1), whereas in 1983 it was 25 years (see reference 2). The evidence suggests that longevity of age can impact the needs of people with Down syndrome. Accordingly, some of the needs identified are age related, such as dementia, sensory issues, musculoskeletal conditions, thyroid dysfunction and sleep apnoea.

The guidance is not intended to cause a differential impact on people with Down syndrome according to age - however, it is expected that the guidance will have a positive impact on support and services for age-related needs. It is not anticipated that this would have any adverse impact on other services for people with Down syndrome.

Disability

In 2020, 1 in every 873 live births were babies with Down syndrome (see reference 3). There are approximately 41,700 people in England and Wales with Down syndrome (see reference 4). Down syndrome is recognised as a disability and is therefore a protected characteristic under section 6 of the Equality Act 2010.

People with Down syndrome are at increased risk, compared with the general population, of:

• congenital and acquired heart conditions (about half of all children with Down syndrome are born with a heart condition (see reference 5))
• developing dementia, compared both with the general population and people with a learning disability (see reference 6)
• infections (see reference 7)
• hearing loss (see reference 8)
• visual impairments (see reference 9)

The guidance is far reaching, with the potential to:

• significantly reduce indirect discrimination
• lower health inequalities
• improve the quality of life of people with Down syndrome in England

This will foster good relations between those people who share this protected characteristic and those who do not. 

The guidance is expected to bring a positive impact to people with Down syndrome by bringing awareness of their specific needs to public bodies, which can be implemented into service provision to improve their care. By taking steps to meet the needs of people with Down syndrome, the guidance enables the advancing of equal opportunity. However, it is important to note that the needs of each person can vary, and support must be tailored to individual presentation and needs. 

There may be a perceived risk of unintended adverse consequences to people with other chromosomal conditions, genetic conditions and/or a learning disability more generally, as a result of a distinct set of decisions taken by relevant authorities on how to perform their functions. There may also be a perceived risk that the guidance may create a hierarchy of conditions by placing emphasis on the needs of those with Down syndrome. However, the guidance does not permit or require authorities to ignore or give a lower priority to the needs of other disabled people or people with other conditions and/or a learning disability who have similar needs compared with people with Down syndrome.

The Department of Health and Social Care (DHSC) remains of the view that it would be unlawful for relevant authorities to prioritise funding or resources for those with Down syndrome above other groups without proper assessment of their respective needs and appropriate justification having regard to all relevant circumstances. 

Importantly, when performing their relevant functions, relevant authorities are required to comply with the Equality Act 2010. This is explicitly stated in the draft guidance itself. Authorities must ensure that they do not discriminate against groups with different protected characteristics other than Down syndrome in seeking to comply with their duty to have due regard to the guidance. Further to this, the draft guidance will include reference to where the guidance may have wider benefits to those with other conditions and/or a learning disability who have similar needs.

The guidance is not about enhancing the rights to services, but rather facilitating equal access to services covered in legal duties. The DS Act and guidance do not negate or undermine the legal responsibilities for services to assess all of the needs of all the people they provide support to.

The guidance, when published, will comply with the Equality Act 2010.

Overall, based on the evidence reviewed, it is expected that the guidance will have positive impacts regardless of the type of disability.

Gender reassignment

While the experiences and needs of people with Down syndrome may vary by gender, including when they are proposing to undergo, undergoing or have undergone gender reassignment, the guidance aims to have positive impacts on all people with Down syndrome. It is expected that the guidance will not lead to any differential impacts across individuals and will have positive impacts regardless of gender reassignment.

Marriage and civil partnership

There was no evidence identified relating to marriage and civil partnership among people with Down syndrome and it is not expected that the guidance will lead to any differential impacts on people with Down syndrome based on marriage and civil partnerships.

Pregnancy and maternity

There was no evidence identified relating to pregnancy and maternity among people with Down syndrome, and it is not expected that the guidance will lead to any differential impacts on people with Down syndrome based on pregnancy and maternity. 

Race

There is some evidence that suggests rates of Down syndrome by ethnicity do not differ significantly compared with the general population (see reference 10). There is, however, limited evidence related to ethnicity among people with Down syndrome or their health and social care outcomes.

The guidance aims to have positive impacts on all people with Down syndrome. It is expected that the guidance will not lead to any differential impacts across individuals and will have positive impacts regardless of race (that is colour, nationality, ethnicity and/or national origin).

Religion or belief

There was no evidence identified relating to religion or belief among people with Down syndrome and it is not expected that the guidance will lead to any differential impacts based on religion or belief. 

Sex

Evidence on health outcomes and service use by men and women with Down syndrome varies. For example, some studies suggest there are no statistically significant differences in age at mortality between men and women (see reference 11) and others suggest that observed mortality rates among women with Down syndrome are slightly higher than for men with Down syndrome (see reference 12).

One study highlighted that women with Down syndrome were more likely to have comorbid conditions than men, though men were more likely to have longer inpatient stays (see reference 13).

While the experiences and needs of people with Down syndrome may vary by sex, the guidance aims to have positive impacts on all people with Down syndrome irrespective of sex. It is expected that the guidance will not lead to any differential impacts across individuals and will have positive impacts regardless of sex.

Sexual orientation

There is minimal evidence on sexual orientation among people with Down syndrome and their health and social care outcomes or service provision. 

However, one literature review concluded that there is a need generally for service providers and carers to be more responsive to the concerns of people with intellectual disabilities who identify as lesbian, gay, bisexual, transgender or queer (LGBTQ) to improve their health and wellbeing by reducing stigma and discrimination, and by increasing awareness of their care and support needs (see reference 14).

While the experiences and needs of people with Down syndrome may vary by sexual orientation, the guidance aims to have positive impacts on all people with Down syndrome. It is expected that the guidance will not lead to any differential impacts across individuals and will have positive impacts regardless of sexual orientation.

Engagement and involvement

Evidence and testing

The guidance has been developed following evidence gathering and engagement with stakeholders, those with lived experience and with input from NHS England and relevant government departments including the:

• Department for Work and Pensions (DWP)
• Department for Education (DfE)
• Ministry of Housing, Communities and Local Government (MHCLG)
• Ministry of Justice (MoJ)

The call for evidence was open from 19 July to 8 November 2022. The call for evidence was published as an easy read version as well, and DHSC received responses across both surveys. DHSC also received contributions sent directly to the call for evidence mailbox. In addition, DHSC ran a number of in-person and online stakeholder engagement sessions to further inform the development of the guidance. There were over 1,500 responses in total to the call for evidence (including to the easy read version), which has provided a significant body of evidence to inform this guidance.

A needs profile paper summarising our evidence base has been published alongside this consultation. All of the needs summarised in the needs profile paper have been identified from either the call for evidence findings, or subsequent engagement with experts and other stakeholders.

Following the completion of the call for evidence, DHSC re-engaged with our stakeholders (including medical and education professors, charities and experts by lived experience). DHSC asked them to review our work and to provide any additional evidence that they felt had been missed during the call for evidence, as well as to highlight any obvious errors in classification of needs, or in the descriptions used for each need. DHSC incorporated their feedback wherever possible - for example, evidence submitted had to meet our existing criteria for inclusion. 

The process to produce the needs profile paper was conducted at significant pace and covered more than 500 papers and references on the highly complex topics of Down syndrome, other chromosomal conditions, genetic conditions and/or a learning disability. Every effort has been taken to try to ensure that all evidence submitted during the call for evidence and subsequent engagement has been included and categorised appropriately.

However, there is a potential for categorisation inaccuracies and omissions in references in the needs profile paper due to the pace, complexity and scale of this work. Internal quality assurance has been completed to try to minimise this risk, but DHSC acknowledges the remaining potential for error.

DHSC also recognises that this is not an exhaustive list of the research pertaining to the needs of people with Down syndrome, other chromosomal conditions, genetic conditions and/or a learning disability. However, the needs profile paper captures evidence on the needs raised to us during the call for evidence period and highlighted by a panel of stakeholder experts. 

Shaping of the guidance

In developing the guidance, engagement with a broad range of people and organisations has been carried out. This has consisted of in-person and online engagement events, including people with Down syndrome and people with other chromosomal conditions, genetic conditions and/or a learning disability, and their parents and/or carers, as well as the organisations that support them.

Relevant government departments were engaged with throughout the development of the draft guidance, and stakeholders were engaged on the content, scope and structure of the guidance. This has included considering where the guidance could have wider benefit for people with other conditions and/or a learning disability who have similar needs, which was a commitment made during the DS Act’s passage through Parliament. 

In 2023, an advisory group of Down syndrome organisations and people with lived experience of Down syndrome was established to inform the guidance development process. This group met 5 times between December 2023 and May 2024. DHSC also established a forum of stakeholders representing people with other conditions and/or a learning disability who have similar needs to those with Down syndrome, to inform how the guidance could have wider benefit. This group met 3 times between January 2024 and May 2025. This engagement was supplemented by rounds of feedback from both sets of stakeholders by email.

A roundtable was held in November 2024 to discuss with stakeholders how DHSC can improve life outcomes for people with Down syndrome and the opportunities presented by guidance in support of this. The roundtable included:

• people with lived experience
• organisations representing people with Down syndrome
• organisations representing people with other conditions and/or a learning disability with similar needs
• integrated care board (ICB) representatives

Following the roundtable, a working draft of the guidance was shared with stakeholders in December 2024. DHSC have taken on board stakeholders’ feedback and have worked with relevant government departments to reflect this in the guidance. A further working draft of the guidance was shared with stakeholders for feedback on 4 June 2025, ahead of the consultation.

In May 2023, NHS England published statutory guidance on executive lead roles which says that every ICB should identify a member of its board to lead on supporting the ICB to perform its functions effectively in the interest of people with Down syndrome. DHSC hosted a symposium for Down syndrome leads within ICBs, which included experts in Down syndrome and people with lived experience.

Summary of analysis

It is expected that there will not be any differential impact among people with Down syndrome, nor among those with other disabilities, other chromosomal conditions, genetic conditions and/or a learning disability.

Overall, the proposals for the guidance are intended to help towards elimination of discrimination, harassment and victimisation, and advancing the equality of opportunity for people with Down syndrome. The guidance is designed to enable equal access to services, already covered in legal duties, as opposed to enhancing the rights to services for people with Down syndrome over groups with similar needs.

Overall impact

It is expected that the guidance will bring a positive impact to people with Down syndrome by bringing awareness of their specific needs to public bodies, which can be implemented into service provision to improve their care. DHSC considers the overall risk of differential impact on equalities related to other protected characteristics to be very low.

Monitoring and evaluation

The guidance proposed under this DS Act will complement other existing policy commitments and programmes, so DHSC does not intend to monitor and evaluate it on its own. However, the guidance will be kept under review, and it will be revised in accordance with the DS Act. 

Conclusion

It is expected that the guidance will bring a positive impact to people with Down syndrome by bringing awareness of their specific needs to public bodies, which can be implemented into service provision to improve their care. The needs profile paper (published alongside the guidance) reflects what was raised about the needs of people with Down syndrome through the Down syndrome call for evidence and subsequent stakeholder engagement. The overall differential impact on equalities related to other protected characteristics is considered to be very low. The guidance will be kept under review.

References

1. Editorial. Dementia in Down’s syndrome: still much to learn. The Lancet Neurology 2016: volume 15, issue 8, pages 776 to 777.
2. Yang Q, Rasmussen SA and Friedman JM. Mortality associated with Down’s syndrome in the USA from 1983 to 1997: a population-based study. The Lancet 2002: volume 359, issue 9,311, pages 1,019 to 1,025.
3. NHS England. NCARDRS Congenital Anomaly Official Statistics Report, 2020. See section 2.3 Prevalence of babies with Down’s syndrome, Edwards’ syndrome and Patau’s syndrome.
4. Down Syndrome Medical Interest Group. Demography data 2020.
5. Down’s Syndrome Association guidance on the heart and heart conditions.
6. Mullins D, Daly E, Simmons A and others. Dementia in Down’s syndrome: an MRI comparison with Alzheimer’s disease in the general population. Journal of Neurodevelopmental Disorders 2013: volume 5, article 19.
7. Down’s Syndrome Association guidance on infections and immunisations.
8. Down’s Syndrome Association guidance on ears, nose, throat and teeth.
9. Down’s Syndrome Association guidance on eyes.
10. Moawad H. Down syndrome: facts and statistics. Very Well Health 2025.
11. Hithersay R, Startin CM, Hamburg S and others. Association of dementia with mortality among adults with Down syndrome older than 35 years. JAMA Neurology 2018: volume 76, issue 2, pages 152 to 160.
12. Cooper S, Allan L, Greenlaw N and others. Rates, causes, place and predictors of mortality in adults with intellectual disabilities with and without Down syndrome: cohort study with record linkage. BMJ Open 2020.
13. Ahlstrom G, Axmon A, Sandberg M and Flygare Wallen E. Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study. BMC Health Services Research 2020.
14. McCann E, Lee R and Brown M. The experiences and support needs of people with intellectual disabilities who identify as LGBT: a review of the literature. Research in Developmental Disabilities 2016: volume 57, pages 39 to 53.