Open consultation

Down Syndrome Act 2022 draft statutory guidance - consultation document

Published 5 November 2025

Applies to England

Ministerial foreword

This government wants to see a fairer Britain where everyone lives well for longer. This includes supporting people with Down syndrome to receive the care and support they need to lead the lives they want to in their communities.

Our 10 Year Health Plan - to shift the NHS from hospital to community, from analogue to digital and from sickness to prevention - will seize the opportunities provided by new technology, medicines and innovation to deliver better care for all patients.

The 10 Year Health Plan for England specifically identifies disabled people as a priority group for neighbourhood health teams which will offer more holistic ongoing support.

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.

The act requires the Secretary of State for Health and Social Care to give statutory guidance to relevant authorities regarding the actions they should be taking to support the needs of people with Down syndrome. Through the implementation of the act, aligned with the overarching aims of our 10 Year Health Plan, we are striving to improve life outcomes for people with Down syndrome, raise awareness and understanding of their needs, and break down barriers to opportunity that they, and other disabled people, face.

The government is now in a position to publish the draft statutory guidance for public consultation - a significant milestone that takes us a step closer to the final guidance being published.

The draft guidance brings important information together in one place to support services to improve life outcomes for people with Down syndrome. It also explains the statutory duties for relevant authorities and supporting documentation provides good practice examples of how those duties can be fulfilled.

In developing the draft guidance, it has been vitally important that people with lived experience, and the organisations that work to support them, were involved. A range of sector and cross-government engagement has also taken place.

The draft guidance has been informed by over 1,500 responses to the call for evidence in 2022 from people with lived experience, their families and carers, professionals, and organisations. Based on what we were told during the call for evidence, and subsequent engagement with sector partners and experts, a needs profile paper has also been developed that sets out the specific needs of people with Down syndrome. The outcome of the call for evidence findings and the needs paper have been published alongside this consultation.

We have also explored where the guidance could have wider benefit for people with other chromosomal conditions, genetic conditions and/or a learning disability who have similar needs, and have sought to address areas where there are overlaps. As such, it is important that services, including commissioners and providers, think about their whole populations when applying this guidance so that all people who can benefit from it are able to do so.

As a minister, I am extremely proud of all the engagement that has taken place to produce the draft guidance for consultation. I am grateful to Sir Liam Fox for introducing his private member’s bill, which led to this important act, and to people with lived experience and the national and local charities who have worked tirelessly to advocate for people with Down syndrome and people with other conditions and/or a learning disability who have similar needs - your contributions have enabled us to make great strides to develop the draft guidance.

In addition to the valuable engagement that has already taken place with stakeholders, this consultation provides a wider platform in which to test the draft guidance ahead of final publication. This will help us to ensure that the guidance is fit for purpose and genuinely helpful to the communities it is intended to support.

I look forward to hearing the views and comments that will help shape this guidance to have a real and lasting impact in improving people’s access to and experiences of services and support.

Dr Zubir Ahmed MP
Parliamentary Under-Secretary of State for Health Innovation and Safety

Executive summary

This consultation sets out what the Department of Health and Social Care (DHSC) is proposing for the statutory guidance issued under the Down Syndrome Act 2022 (the DS Act).

We have considered the responses to the DS Act 2022 guidance: call for evidence regarding areas to include in the draft statutory guidance.

We would now like to invite people to take part in the full consultation to widely test the draft statutory guidance ahead of final publication.

Introduction

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

The statutory guidance will support relevant authorities when commissioning or providing services in the exercise of their relevant functions. It will also ensure that people with Down syndrome, their families and/or carers can better understand the services available to them and the legal duties and frameworks that are in place to help them access the right support. The government’s vision is to ensure people with Down syndrome receive the support they need to live longer, healthier and happier lives.

As committed to during the DS Act’s passage through Parliament, we are exploring where the statutory guidance could have wider benefit, including for people with other chromosomal conditions, genetic conditions and/or a learning disability who have similar needs (to note, this list is not exhaustive). People with these other conditions and/or a learning disability may have needs that overlap with those of people who have Down syndrome. The draft statutory guidance sets out how people living with these conditions and/or a learning disability can also expect support from services to help them live full and independent lives.

The statutory guidance also brings together existing statutory requirements and guidance, which relevant authorities must and/or should already be doing to support people with Down Syndrome and are considered steps that would be appropriate for relevant authorities to take to meet the needs of people with Down syndrome. Relevant authorities must have due regard to the statutory guidance with respect to people with Down syndrome when exercising their relevant functions.

Any ‘must’ instructions in the statutory guidance are legal obligations under existing legislation. They are not imposed under the DS Act. With respect to some of these legal obligations, the statutory guidance may frame those obligations in such a way as to apply them specifically to people with Down syndrome. This is because the intention of the statutory guidance is to make it helpful for relevant authorities to understand those legal obligations that already apply to people with Down syndrome. However, note that those legal obligations are not restricted only to people with Down syndrome and must be complied with if they apply to other groups of people.

The term ‘should’ is used where relevant authorities are expected to follow the statutory guidance unless there is a good reason not to. The terms ‘may’, ‘can’ or ‘could’ are used where the statutory guidance is to be followed wherever possible as examples of good practice.

The obligation to have due regard to the statutory guidance under the DS Act does not apply to persons who are not ‘relevant authorities’ as defined in the schedule to the DS Act. Additionally, relevant authorities are not under the obligation to have due regard to the statutory guidance in respect of people with other conditions and/or a learning disability (who do not have Down syndrome), unless those elements of the statutory guidance are legal obligations under other legislation.

Background

Currently, there is estimated to be around 47,000 people in the UK with Down syndrome - one in every 873 babies born in England in 2020 had Down syndrome.

Down syndrome is a chromosomal condition that usually occurs when a person is born with an extra copy of chromosome 21. This means that the person has a total of 47 chromosomes instead of 46, which affects how their brain and body develop. This type of Down syndrome is known as trisomy 21. There are 2 other, less common types of Down syndrome:

• mosaic Down syndrome (or mosaicism) is diagnosed when there is a mixture of 2 types of cells, some containing 3 copies of chromosome 21 while other cells have the usual 2 copies
• translocation occurs when an additional full or partial copy of chromosome 21 attaches to another chromosome, rather than there being a separate chromosome 21

The presence of the extra full or partial chromosome 21 causes the characteristics of Down syndrome. As a result, there are health conditions that people with Down syndrome are more likely to have. For example, research shows that compared with the general population, people with Down syndrome are more likely to have medical conditions such as hearing and visual impairments, and congenital and acquired heart conditions. Approximately half of all children with Down syndrome are born with a heart condition. Adults with Down syndrome can face additional challenges as they are at a higher risk of developing early-onset dementia compared with the general population.

In addition to health issues, people with Down syndrome can also face challenges obtaining information and accessing other services, including social care, education, employment and housing services. Ensuring relevant authorities across systems are equipped with the knowledge and understanding of the specific needs of people with Down syndrome is an important part of the process. It will help to provide better services to improve the quality of life for people with Down syndrome, and it will improve the support systems for their families and/or carers.

Further information on the needs of people with Down syndrome is set out in the needs profile paper, which includes the evidence that was submitted to DHSC through the call for evidence.

The statutory guidance will bring together in one place everything that relevant authorities ‘must’ and ‘should’ already be doing across systems in England. It aims to raise awareness and advance equity between people with Down syndrome (or similar conditions) and people who do not, by recognising that everyone has different needs. It sets out existing relevant legislation and statutory guidance, and is supplemented with an annex of resources and examples of good practice. It also aims to provide better clarification of the help and services people with Down syndrome should expect to receive across different sectors.

As set out in statutory guidance to the Health and Care Act 2022, each integrated care board (ICB) is expected to nominate an executive lead for people with Down syndrome. The executive lead will support the ICB chief executive and board to ensure the ICB meets the requirements in the DS Act and takes account of the statutory guidance when making commissioning decisions at a system and local level.

In developing the draft statutory guidance, we have worked closely with NHS England and other 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)

Together, we have ensured there is a collaborative approach to support the delivery of services for people with Down syndrome.

This collaboration and the feedback from the call for evidence has been vital in the development of the statutory guidance to improve services for people with Down syndrome.

The statutory guidance, once published following consultation, will be kept under review. We recognise that, at any point in time, policies referred to in the statutory guidance may become out of date as policies develop, but the main principles will continue to apply.

This government’s objective is to ensure relevant authorities have a deeper understanding of individual needs so they can provide a bespoke service to those who need it. It will also ensure there is more awareness about the similarities and/or overlaps regarding the needs of people with Down syndrome and people with other conditions and/or a learning disability.

About this consultation

This consultation will enable DHSC to consider a range of views that will inform the statutory guidance to support the needs of people with Down syndrome. It is also an opportunity to better understand how this guidance could help support people with similar or overlapping needs to those of people with Down syndrome.

Your views are important, and we are committed to engaging with you as fully as possible to ensure this draft statutory guidance is clear, informative and useful to relevant authorities. The consultation also provides an opportunity for people with lived experience and their families and/or carers to share their views to help improve the life outcomes of people with Down syndrome.

This consultation focuses on the main 7 sections in the statutory guidance:

1. Accessible and person-centred services
2. High-quality and holistic healthcare
3. Independence through social care
4. Effective education and preparation for adulthood
5. Meaningful employment
6. Appropriate housing
7. Where to find help and support

All the relevant authorities across health, social care, education and housing services must be aware of their duty to have regard to the guidance to ensure they are meeting the needs of people with Down syndrome.

Next steps

During the consultation process, we will continue to engage with stakeholders to gather additional views or answer any questions you may have while collecting the data.

Once this consultation has closed, and we have analysed the responses, DHSC will publish a response on GOV.UK. Following the published response, the final Down syndrome statutory guidance will be issued.

Equalities and legal duties

While this consultation is conducted under the DS Act and, as such, relates primarily to the needs of people with Down syndrome, we recognise that it may also provide useful information and evidence to support people who may have similar needs. The contributions we have received from professionals and members of organisations representing people with other conditions and/or a learning disability has helped to raise awareness and understanding about individual specific needs and how they can differ or intersect with the needs of people with Down syndrome.

It is important to note that, while the DS Act relates to Down syndrome, the legal duties (meaning the things providers must do under other legislation) are likely to apply equally to people with all other chromosomal conditions, genetic conditions and/or a learning disability where there is a similar need. Commissioners and service providers are already under statutory duties in the Equality Act 2010 in relation to non-discrimination, the making of reasonable adjustments and the public sector equality duty. Nothing in the draft statutory guidance affects those duties. 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.

We welcome the opportunity for further feedback through this consultation so we can build on this evidence. It is important to ensure everyone with similar or overlapping needs has opportunities, like everyone else, to access services and achieve their goals and aspirations.

How to respond

Please respond through our online survey.

Do not provide personal data when responding to free-text survey questions. Any personal data included will be removed before analysis of these responses and will therefore not be considered in the consultation outcome.

The consultation is open for 12 weeks and will close at 11:59pm on 28 January 2026. If you respond after this date, your response will not be considered.

If you have any queries on this consultation, email ndld.consultation@dhsc.gov.uk. Do not send your consultation answers or any personal information to this email address.

Consultation questions

About you

In what capacity are you responding to this survey?

• An individual sharing my personal views and experiences
• An individual sharing my professional views
• On behalf of an organisation

Questions for individuals sharing their personal views and experiences

Which of the following best describes you?

• A person with Down syndrome (or someone responding on their behalf)
• A person with other chromosomal conditions, genetic conditions and/or a learning disability (or someone responding on their behalf)
• A family member or carer of someone with Down syndrome
• A family member or carer of someone with other chromosomal conditions, genetic conditions and/or a learning disability
• Other, please specify

If you said that you are responding as a family member or carer, please tell us about any health conditions and/or learning disability that your family member (or the person you care for) has. (Optional)

Please do not include any personal information that might identify you or anyone else.

If you’re responding to this survey on behalf of someone else, please answer these questions about the person you’re responding on behalf of, rather than yourself.

What is your age?

• Under 16
• 16 to 24
• 25 to 34
• 35 to 44
• 45 to 54
• 55 to 64
• 65 to 74
• 75 or above
• Prefer not to say

What is your sex?

• Male
• Female
• Prefer not to say

Is the gender you identify with the same as your sex registered at birth?

• Yes
• No
• Prefer not to say

Where do you live in the UK?

• England
• Scotland
• Wales
• Northern Ireland
• I live outside the UK
• Prefer not to say

If you said England, which area of England do you live in?

• North East England
• North West England
• Yorkshire and the Humber
• East of England
• East Midlands
• West Midlands
• South East England
• South West England
• London
• Prefer not to say

What is your ethnic group?

• White - includes British, Northern Irish, Irish, Gypsy, Irish Traveller, Roma or any other White background
• Mixed or multiple ethnic groups - includes White and Black Caribbean, White and Black African, White and Asian or any other Mixed or multiple background
• Asian or British Asian - includes Indian, Pakistani, Bangladeshi, Chinese or any other Asian background
• Black, Black British, Caribbean, African or any other Black background
• Other - includes Arab or any other ethnic group
• Prefer not to say

Do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more?

This is about health conditions, illnesses or impairments you may have. Consider conditions that always affect you and those that flare up from time to time. These may include, for example, sensory conditions, developmental conditions or learning impairments.

• Yes
• No
• Prefer not to say

If you said yes, do any of your conditions or illnesses reduce your ability to carry out day-to-day activities?

• Yes, a lot
• Yes, a little
• Not at all
• Prefer not to say

If you feel comfortable doing so, please list any conditions or illnesses you have. (Optional)

Please do not include any personal information that might identify you or anyone else.

Questions for organisations and individuals sharing their professional views

If you are responding as an individual sharing your professional views, which of the following describes you?

Select all that apply.

• Someone who works with people with Down syndrome and their families and/or carers
• Someone who works with people with other chromosomal conditions, genetic conditions and/or a learning disability and their families and/or carers
• Other, please specify

If you are responding on behalf of an organisation, does your organisation work with any of the following?

Select all that apply

• People with Down syndrome and their families and/or carers
• People with other chromosomal conditions, genetic conditions and/or a learning disability and their families and/or carers
• Other, please specify

What sector do you work in?

• Public sector
• Private sector
• Not for profit
• Other, please specify

What is the primary focus of your work?

• Academic
• Advocacy
• Armed forces
• Construction
• Education
• Emergency services
• Finance
• Healthcare
• Hospitality
• Housing
• Insurance
• Justice system
• Legal
• Local government
• National government
• Social care
• Sport
• Transport
• Other, please specify

Where does your organisation operate or provide services?

Select all that apply.

• England
• Wales
• Scotland
• Northern Ireland
• The whole of the UK
• Outside the UK
• Not applicable

If you said England, in which areas of England does your organisation operate or provide services?

Select all that apply.

• North East England
• North West England
• Yorkshire and the Humber
• East of England
• East Midlands
• West Midlands
• South East England
• South West England
• London

or

• The whole of England

What is the name of your organisation? (If you are responding as an individual sharing professional views, what is the name of the organisation where you work?) (Optional)

Views on the draft guidance as a whole

The questions in this consultation are about the draft Down Syndrome Act 2022 statutory guidance. Where we refer to ‘the guidance’ in the following questions, we mean the draft guidance. Following this consultation, the draft guidance will be finalised and will be published as the Down Syndrome Act 2022 statutory guidance.

Question for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statement?

The guidance meets its aim to raise awareness of the needs of people with Down syndrome by bringing together in one place everything that relevant authorities must and should already be doing to support them and meet their needs.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

The guidance clearly explains the help and services that people with Down syndrome can expect to receive.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions for everyone

To what extent do you agree or disagree with the following statement?

The guidance will have a positive impact on people with Down syndrome and their families and/or carers.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

If you have any further comments on the content of the guidance, please outline them here. This could include any recommendations for improvement you may have. (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

Opportunity to provide more feedback

Thank you for your answers so far. You can either go to the end of the survey now or you can provide more feedback on the guidance.

Please select which sections of the guidance you would like to provide further feedback on.

Select all that apply. You will only be shown questions relating to the topics you’ve selected.

• 1. Accessible and person-centred services
• 2. High-quality and holistic healthcare
• 3. Independence through social care
• 4. Effective education and preparation for adulthood
• 5. Meaningful employment
• 6. Appropriate housing
• 7. Where to find help and support
• Inclusion of guidance about people with other chromosomal conditions, genetic conditions and/or a learning disability
• The resources and examples of good practice annex

or

• None of the above, I would like to go straight to the end of the consultation

1. Accessible and person-centred services

DHSC recognises that many of the duties that public services hold with regards to people with Down syndrome are not specific to one organisation but are a shared responsibility across multiple organisations. This section of the guidance outlines the joint responsibilities that all relevant authorities have in respect of providing services and support to people with Down syndrome.

Question for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statement?

The guidance will help organisations understand what legal duties they have in ensuring their services for people with Down syndrome are accessible and person-centred.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

The guidance makes it clear what services and support people with Down syndrome can expect to be offered.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions for everyone

To what extent do you agree or disagree with the following statements?

The guidance clearly sets out the importance of organisations learning to communicate better with people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains the reasonable adjustments that must be made by organisations providing services for people with Down syndrome so they can access the support they need.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance will improve how organisations work together to support people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

What changes, if any, do you think are needed to make this section (accessible and person-centred services) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

2. High-quality and holistic healthcare

People with Down syndrome are more susceptible to a range of illnesses including, but not limited to:

• cardiac conditions
• musculoskeletal disorders
• hearing and visual conditions
• gastrointestinal issues
• mental illness
• dementia

This section of the guidance focuses on ensuring the right services are available and accessible to meet the different healthcare needs of people with Down syndrome.

Question for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statement?

The guidance clearly sets out the steps relevant authorities should take to meet their legal duties regarding the health needs of people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

The guidance provides clear information about the healthcare support available to people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions for everyone

To what extent do you agree or disagree with the following statement?

The guidance clearly sets out the importance of health and care staff having the right skills, knowledge and training to provide high-quality and holistic healthcare for people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

What changes, if any, do you think are needed to make this section (high-quality and holistic healthcare) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

3. Independence through social care

People with Down syndrome often require social care support to help them with a range of activities to enable them to live as independently as possible. This section of the guidance focuses on what relevant authorities should do to meet their legal duties regarding social care support.

Questions for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statements?

The guidance provides clear information regarding the steps relevant authorities should take to undertake a needs assessment for people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains what relevant authorities should do to offer different provisions of social care and support to people with Down syndrome.

For example, supporting people to pay bills, helping with travel arrangements, cooking and cleaning.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains how different social care services can support children and young people with Down syndrome in making the transition to adulthood.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

The guidance clearly explains what social care support people with Down syndrome can expect to receive.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for everyone

What changes, if any, do you think are needed to make this section (independence through social care) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

4. Effective education and preparation for adulthood

Expectations for educational attainment is central to ensuring all children and young people reach their full potential. This section of the guidance outlines the steps that are appropriate for relevant authorities who provide, govern and plan education and youth offending services to take to meet the special educational needs of people with Down syndrome in education and training.

Questions for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statements?

The guidance clearly explains the steps relevant authorities should take to support the educational needs of children and young people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains the steps relevant authorities should take to address the educational barriers to learning faced by people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

The guidance clearly explains the support people with Down syndrome and their families and/or carers can expect to receive from relevant authorities in meeting their learning needs.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Question for everyone

What changes, if any, do you think are needed to make this section (effective education and preparation for adulthood) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

5. Meaningful employment

People with Down syndrome often face challenges preparing for higher education and employment. This section of the guidance focuses on what relevant authorities should do to provide and plan for services related to education and employment.

Questions for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statements?

The guidance clearly sets out what relevant authorities should do to support people with Down syndrome into employment.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains the information relevant authorities should give to support people with Down syndrome with regards to life-long learning.

For example, information regarding internships, apprenticeships and participation in employment.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions for everyone

To what extent do you agree or disagree with the following statement?

The guidance clearly explains the legal duties regarding reasonable adjustments that organisations must make to support people with Down syndrome with regard to higher education and employment.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

What changes, if any, do you think are needed to make this section (meaningful employment) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

6. Appropriate housing

People with Down syndrome have a wide range of different needs which will change over time. This section of the guidance focuses on the variety of housing options that may be appropriate for people with Down syndrome, and the information relevant authorities should give to support people with Down syndrome to live as independently as possible in their own home.

Questions for organisations and individuals sharing their professional views

To what extent do you agree or disagree with the following statements?

The guidance clearly explains what information relevant authorities should give to people with Down syndrome regarding their housing options.

For example, information on supported accommodation and residential care.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance clearly explains what relevant authorities should do to support people with Down syndrome to enable them to live more independently.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance will help organisations to understand the appropriate steps they should take to comply with the legal duties regarding supporting people with Down syndrome in relation to homelessness.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions for everyone

To what extent do you agree or disagree with the following statement?

The guidance sets out clear information on the duties of local housing authorities to support people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

What changes, if any, do you think are needed to make this section (appropriate housing) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

7. Where to find help and support

We recognise that people with Down syndrome and their families and/or carers may want to know what they can do if they feel the final statutory guidance is not being reasonably followed. This section of the guidance has been written to help you understand your options.

Questions for individuals sharing their personal views and experiences

To what extent do you agree or disagree with the following statement?

Based on this guidance, I would know how to make a complaint or escalate concerns about accessing support or services.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

What changes, if any, do you think are needed to make this section (where to find help and support) clearer? (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included in the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

Question for organisations and individuals sharing their professional views

Are there any other ways to make complaints or escalate concerns about accessing support or services that are not mentioned in the guidance? Please describe any additional options you are aware of. (Optional, maximum 200 words)

Inclusion of guidance about people with other chromosomal conditions, genetic conditions and/or a learning disability

To what extent do you agree or disagree with the following statements?

The guidance should include the needs of people with other chromosomal conditions, genetic conditions and/or a learning disability.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

The guidance explains clearly what relevant authorities could do to support people with other chromosomal conditions, genetic conditions and/or a learning disability to access the same services used to support people with Down syndrome.

• Strongly agree
• Agree
• Neither agree nor disagree
• Disagree
• Strongly disagree
• Not sure

Questions on the resources and examples of good practice annex

How useful did you find the resources and examples of good practice annex?

• Extremely useful
• Very useful
• Moderately useful
• Slightly useful
• Not at all useful
• Not sure

How could the resources and examples of good practice annex be improved?

Select all that apply.

• Further case studies and/or examples of best practice could be included
• Further links to additional resources could be included
• The case studies and examples of best practice could be clearer
• Other
• Don’t know
• No changes are needed

Please explain your answer.

If you have any suggestions for other resources, case studies or examples of best practice that could be included, please include them here. (Optional, maximum 200 words)

While the government cannot guarantee all recommended changes can be included to support the final statutory guidance, the more specific the recommendations made, the higher likelihood there is they can be considered for inclusion.

Privacy notice

The Down Syndrome Act 2022 received Royal Assent in April 2022. Under the act, the Secretary of State for Health and Social Care is required to give guidance to relevant authorities (as defined in the schedule to the act) in health, social care, education and housing services on what they should be doing to meet the needs of people with Down syndrome.

We are launching this consultation to seek public views on the draft guidance to inform the final statutory guidance. As part of this consultation, we will be collecting responses which will contain data that we need to keep safe. This notice explains how we will do that.

Data controller

The Department of Health and Social Care (DHSC) is the data controller.

What personal data we collect

At the beginning of the survey, we will ask you whether you are responding as an individual, on behalf of someone else, as an individual sharing your professional view, or on behalf of an organisation.

We also ask if you, or the person you are responding on behalf of, has Down syndrome or another condition, learning disability or illness. We will ask if you are a family member and/or carer of someone who has Down syndrome or another condition and/or learning disability.

If you are an individual sharing your professional view or responding on behalf of an organisation, we will ask if you work with people with Down syndrome or people with other conditions and/or a learning disability as well as their families and/or carers.

We will also ask you your age, sex, gender identity, ethnic group, health status and the region of England you live in. You can select ‘prefer not to say’ if you do not want to provide this information.

We only collect this data to analyse any trends and to make sure we have received responses from a broad range of people and organisations. We will not use this data to identify you for any other purpose. 

We will also be asking other open questions with free-text answer boxes. Please do not include any information that could directly identify you in these boxes. If we receive any responses which include information that may identify you, we will remove this information before analysis.

How we use your data (purposes)

We are collecting this data to inform our consultation on the Down Syndrome Act 2022 statutory guidance. All data will be treated in the strictest confidence.

We are collecting personal data for statistical purposes to help us understand how representative the results of the consultation are, and to identify any different views and experiences that may vary across demographic groups.

Legal basis for processing personal data

Under data protection law, we need to tell you what our legal basis is for processing the data you are providing us with. Under article 6 of the United Kingdom General Data Protection Regulation (UK GDPR), the lawful basis we rely on for processing this information is:

• (e) for the performance of a task in the public interest, or in the exercise of our official authority

In addition, we are also processing special category data under the following condition as per article 9 of the UK GDPR:

• (g) for reasons of substantial public interest, namely statutory and government purposes

Data processors and other recipients of personal data

All responses to the consultation will be seen by people working in policy or analysis at DHSC and developing the Down Syndrome Act statutory guidance. This consultation is hosted via an online platform owned by SocialOptic, which is a contracted supplier of DHSC. SocialOptic will delete any personal data in line with the retention and disposal periods outlined in this privacy notice, or earlier if instructed to do so by DHSC.

If we receive a large number of responses to the consultation, we may need help from another organisation to analyse the responses, such as another government department.

If we do need the help of another government department, we will only share anonymised data. We will ensure you are not identifiable from this data.

International data transfers and storage locations

Your data will be stored in the UK. We have security procedures in place to make sure your data is safe and does not get lost or accessed by anyone who does not need to see it.

Storage of data by SocialOptic is provided via secure servers located in the UK.

Retention and disposal policy

Your data will be held for 2 years after the consultation closes. After 2 years we will safely delete all data.

SocialOptic will securely erase the data held on its system one year after the online survey closes, or when instructed to do so by DHSC if the data has served its intended purpose (whichever happens earlier).

How we keep your data secure

Both DHSC and SocialOptic have security procedures in place to make sure your information is safe and to make sure it does not get lost, accessed or misused by anyone who does not need to see it.

This includes only allowing authorised persons access to your data via methods like password protection and encryption, and making sure the servers we use are secure. We have written procedures and policies in place that are regularly audited and reviewed by senior members of staff.

SocialOptic is Cyber Essentials certified.

Your rights as a data subject

By law, data subjects have a number of rights, and this processing does not take away or reduce these rights under the EU General Data Protection Regulation (2016/679) and the UK Data Protection Act 2018 applies.

These rights are:

1. The right to get copies of information - individuals have the right to ask for a copy of any information about them that is used.

2. The right to get information corrected - individuals have the right to ask for any information held about them that they think is inaccurate, to be corrected.

3. The right to limit how the information is used - individuals have the right to ask for any of the information held about them to be restricted, for example, if they think inaccurate information is being used.

4. The right to object to the information being used - individuals can ask for any information held about them to not be used. However, this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case.

5. The right to get information deleted - this is not an absolute right, and continued use of the information may be necessary, with individuals being advised if this is the case.

Please note that the above rights do not apply where we cannot identify an individual from the data we hold.

Comments or complaints

Anyone unhappy or wishing to complain about how personal data is used as part of this programme, should contact data_protection@dhsc.gov.uk in the first instance or write to:

Data Protection Officer
1st Floor North
39 Victoria Street
London
SW1H 0EU

Anyone who remains dissatisfied can complain to the Information Commissioners Office. Their website address is www.ico.org.uk and their postal address is:

Information Commissioner’s Office
Wycliffe House
Water Lane
Wilmslow
Cheshire
SK9 5AF

Automated decision making or profiling

No decision will be made about individuals solely based on automated decision making (where a decision is taken about them using an electronic system without human involvement) which has a significant impact on them.

Changes to this policy

This privacy notice is kept under regular review. This privacy notice was last updated on 5 November 2025.