Down Syndrome Act 2022: draft statutory guidance

Question 1

Status of this guidance

Accepted Answer

This is draft statutory guidance issued for consultation by the Secretary of State for Health and Social Care under section 1 of the Down Syndrome Act 2022 (‘the DS Act’). Once finalised and published, the statutory guidance will have practical application in England only.

This DS Act draft statutory guidance (‘the guidance’) sets 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. This is guidance given under the DS Act, and it contains:

existing statutory duties (which must be complied with in any case)
existing guidance
examples of good practice when planning, commissioning and/or providing services and support to people with Down syndrome (see ‘Annex: resources and examples of good practice’ on the main consultation page)

It is issued for all ‘relevant authorities’ as defined in the schedule to the DS Act. For details of who falls under the term ‘relevant authorities’ and their ‘relevant functions’ to which this guidance applies, see the ‘Relevant authorities and functions’ section below.

The relevant authorities (as defined below) must have due regard to this guidance with respect to people with Down syndrome when exercising their relevant functions (also defined below). Therefore, it is important that relevant authorities ensure that they are familiar with this guidance. This guidance will be kept under review and updated as necessary.

Relevant authorities shall note that the DS Act and this guidance neither intend nor require them to provide enhanced or additional services, care or treatment to 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 (‘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.

This guidance brings together existing statutory requirements and guidance that relevant authorities must and/or should already be complying with to support people with Down Syndrome and those with other conditions and/or a learning disability who have similar needs. Where this guidance refers to statutory obligations under other legislation, the legal obligation to comply will be clear with the use of the word ‘must’ (see the ‘Understanding the language of this guidance’ section below).

With respect to some of these legal obligations, the guidance may frame those obligations in such a way as to apply them specifically to people (children or adults) with Down syndrome. This is because the intention of this guidance is to make it helpful for relevant authorities to understand those legal obligations that already apply to people with Down syndrome. However, those legal obligations are not restricted to only people with Down syndrome. Where there is existing guidance, this guidance does not replace it.

Since departures from this guidance, like other statutory guidance, could give rise to legal challenge, reasons for any departure should be carefully considered and recorded clearly. Courts may scrutinise such reasons to ensure that there is sufficient justification in such circumstances.

This 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 any obligation to have due regard to this guidance. However, this guidance will nonetheless be beneficial for others in carrying out their duties.

The accompanying ‘Annex: resources and examples of best practice’ to this guidance also includes good practice and suggested actions that build on existing statutory requirements and guidance.

Relevant authorities and functions

‘Relevant authorities’ and their ‘relevant functions’ (the functions that each authority has a duty to have due regard to under this statutory guidance) are defined in the schedule to the DS Act as follows.

Health

The relevant healthcare authorities are:

NHS England^{[footnote 1]}
integrated care boards (ICBs) ^{[footnote 2]}
special health authorities (established under section 28 of the National Health Service Act 2006)
NHS trusts (established under section 25 of the National Health Service Act 2006)
NHS foundation trusts

Relevant health authorities must have regard to this guidance when exercising all of their functions.

Relevant authorities are local authorities with social care responsibilities - specifically:

county councils
district councils for areas where there is no county council
London borough councils
the Common Council of the City of London
the Council of the Isles of Scilly

Relevant social care authorities must have regard to this guidance when exercising the following functions:

care and support functions under part 1 of the Care Act 2014
social service functions and so on under section 50 (2) of the Children Act 2004
special educational needs and disabilities functions under part 3 of the Children and Families Act 2014^{[footnote 3]}
mental health after-care functions under section 117 of the Mental Health Act 1983

Education

The relevant education authorities are:

school governing bodies
governing bodies of further education institutions
proprietors of academies
providers of institutions approved under section 41 of the Children and Families Act 2014
pupil referral units’ management committees
providers of relevant early years education
youth offending teams and persons in charge of relevant youth accommodation

Relevant education authorities must have regard to this guidance when exercising their functions under part 3 of the Children and Families Act 2014.

Housing

Relevant authorities are local housing authorities - specifically:

district councils
county councils for areas where there is no district council
London borough councils
the Common Council of the City of London
the Council of the Isles of Scilly

Relevant housing authorities must have regard to this guidance when exercising the following functions:

provision of housing functions under part 2 of the Housing Act 1985
allocation of housing functions under part 6 of the Housing Act 1996
homelessness assistance functions under part 7 of the Housing Act 1996

Question 2

About this guidance

Accepted Answer

The aim of this draft statutory guidance is to:

raise awareness of the specific needs of people with Down syndrome
bring together in one place everything that relevant authorities must and should already be doing to support people with Down syndrome and meet their needs

This guidance sets out:

existing legislative functions, including duties
how these functions should be exercised in relation to the provision of services and support for people with Down syndrome
practical steps that relevant authorities must and should take to meet the needs of people with Down syndrome when exercising their relevant functions

This guidance also aims to clarify the help and services that people with Down syndrome can expect to receive. Therefore, this guidance can also be used by people with Down syndrome and their families and carers.

This guidance includes 7 sections:

Accessible and person-centred services - this section outlines the joint responsibilities that all relevant authorities have in respect of providing services and support to people with Down syndrome.
High-quality and holistic healthcare - this section outlines the steps that are appropriate for health services and professionals to take to meet the health and developmental needs of people with Down syndrome.
Independence through social care - this section outlines the steps that are appropriate for local authorities and people who provide social care and social services to take to support the care needs of people with Down syndrome.
Effective education and preparation for adulthood - this section 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.
Meaningful employment - this section outlines the steps that are appropriate for local authorities to take to meet the needs of people with Down syndrome with regards to accessing employment and being employed.
Appropriate housing - this section outlines the steps that are appropriate for local authorities and people providing housing to take to support the needs of people with Down syndrome with regards to living in and accessing housing.
Where to find help and support - this section sets out the steps that people can take if they or someone they know are not receiving the support or services they are entitled to.

All the sections may also be helpful to people with Down syndrome, their families and carers, and the wider public, in understanding what services and support they can expect to be offered.

At the beginning of each of the first 6 sections is a summary that explains in more detail:

who the section is aimed at
what the relevant needs of people with Down syndrome are
what the guidance says

Each section also explains how this guidance could be relevant to people with other conditions and/or a learning disability who have similar needs.

The needs of people with Down syndrome

Down syndrome is one of the most common chromosomal conditions (see reference 1), which 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) - this 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 - this 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 people with Down syndrome are more susceptible to infections and are at a significantly higher risk of developing certain conditions than the general population, including (but not limited to):

younger onset dementia (see reference 2)
hearing and visual impairments
congenital and acquired heart conditions

People with Down syndrome are also very likely to have some level of learning disability. A learning disability refers to a significantly reduced ability to understand new or complex information and to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood. Some people will live independently or with some support, while other people will have a higher level of needs or multiple needs and require more regular care and support.

In July 2022, a DS Act 2022 guidance: call for evidence across England was launched to seek views on the needs of people with Down syndrome and to inform the development of this 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. This included views on the specific needs of people with Down syndrome, as well as on examples of good practice across health, social care, education and housing services.

In developing this guidance, engagement with a broad range of people and organisations was carried out. This consisted of in-person and online engagement events, including people with Down syndrome and those with other conditions and/or a learning disability who have similar needs, and their parents and carers, as well as experts and practitioners from multiple sectors.

A description of the needs of people with Down syndrome is outlined in the accompanying Down syndrome needs profile paper. The needs profile paper was produced by:

analysing evidence submitted to the call for evidence from those with lived experience
reviewing academic research submitted by experts and other stakeholders

This guidance is intended to help ensure that people with Down syndrome receive the right support to live independently and participate fully in society. Although there are already legal duties and frameworks in place to ensure that services are tailored to individuals’ needs, people with Down syndrome and their families and carers have reported that they often find it difficult to access the right support.

This guidance clarifies the duties of, and expectations placed upon, a range of organisations to ensure appropriate support for people with Down syndrome is available, accessible and effective.

The needs of people with Down syndrome, taken from the call for evidence summary of findings and accompanying Down syndrome needs profile paper, are summarised throughout relevant sections of this guidance. Further evidence in support of our assertions, including references to academic papers, can be found in the needs profile paper and the ‘References’ section below.

This guidance explains how these needs can be met and the accompanying ‘Annex: resources and examples of good practice’ provides examples of good practice in meeting these needs.

Question 3

Equalities and application of this guidance to people with other conditions

Accepted Answer

The DS Act seeks to ensure that the relevant authorities, in having regard to this guidance issued by the Secretary of State for Health and Social Care, take account of the specific needs of people with Down syndrome when planning, designing and providing services and support to ensure that these needs are not overlooked.

In deciding what steps should be taken in response to the guidance, relevant authorities will be required to comply with the Equality Act. The Equality Act has specific provisions for people with a disability. Under section 6 of the Equality Act, all people with Down syndrome will qualify as people with a disability, as will any person who has a physical or mental impairment that has a ‘substantial’ and ‘long term’ negative effect on their ability to carry out normal daily activities.

Under the Equality Act, protection from discrimination for disabled people applies in a range of circumstances, including:

services and public functions
work
education
associations

The public sector equality duty, which is explained later in this section, also applies to public authorities.

We know there are many people who have chromosomal conditions other than Down syndrome, a genetic condition and/or a learning disability. For example, there are currently approximately 1.3 million people with a learning disability in England, many of whom have other conditions that give rise to similar needs to people with Down syndrome. These people should be equally served through existing duties.

Many people with a disability - and in particular chromosomal conditions, genetic conditions and/or a learning disability - may benefit from adaptations to services put in place for people who have Down syndrome, recognising that reasonable adjustments are always person specific. People with other conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from support equivalent to the support put in place for people with Down syndrome where they have similar needs.

Relevant authorities may want to use this guidance to support them in exercising their functions in respect of:

meeting the needs of this wider population of people
reducing the inequalities they may face

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. All commissioners and providers of public services must comply with their duties under the Equality Act to ensure that people with protected characteristics are not discriminated against either directly or indirectly. This includes making reasonable adjustments to their services for disabled people - section ‘1. Accessible and person-centred services’ of this guidance provides further information on how to put reasonable adjustments in place.

All public authorities must also comply with the public sector equality duty set out in the Equality Act. This means that, in exercising their functions, all public authorities must have due regard to the need to:

eliminate discrimination, harassment, victimisation and any other conduct prohibited by or under the act
advance equality of opportunity between persons who share a relevant protected characteristic and persons who do not share it
foster good relations between persons who share a relevant protected characteristic and persons who do not

It is important to note that organisations or people that exercise public functions may also be subject to the public sector equality duty - see the Equality Act 2010: guidance for further information on how to comply with these duties.

Examples of conditions with overlapping needs

Chromosomal conditions

DiGeorge syndrome (22q11.2 deletion or velocardiofacial syndrome) affects approximately 1 in 2,000 to 4,000 live births. It is a multisystem condition with an increased prevalence of a variety of health problems.

Overlapping needs to Down syndrome arise from common features the 2 conditions share, such as heart defects, and higher susceptibility to infections, thyroid disorders and hearing and visual impairments.

The multisystem nature of both conditions also requires a multidisciplinary approach to monitoring, early identification and timely referrals to specialists where specific need or concern has been identified.

Genetic conditions

Acrodysostosis is a rare genetic disorder that causes skeletal abnormalities, endocrine issues and varying levels of developmental delay and/or learning difficulties.

Both acrodysostosis and Down syndrome have overlapping needs, such as requiring support due to skeletal anomalies, which cause delays in the acquisition of motor milestones, and multidisciplinary team intervention to support mobility.

Both conditions also cause varying levels of developmental delay and/or learning difficulties, and require support with education and to cope independently due to impaired social functioning.

Question 4

Understanding the language of this guidance

Accepted Answer

Terminology

Health conditions

It is generally accepted that ‘Down syndrome’ and ‘Down’s syndrome’ can be used interchangeably. The term ‘trisomy 21’ may also be used. Different people and organisations have different preferences when it comes to terminology. This draft statutory guidance refers to ‘Down syndrome’, which is consistent with the terminology used in the DS Act.

Where we use the term ‘other conditions’, this refers to any chromosomal or genetic condition resulting in a person having overlapping needs to those with Down syndrome.

The use of SEN and SEND

This guidance refers variously to special educational needs (SEN) and to special educational needs and disabilities (SEND).

While these terms are similar and, in some contexts, used interchangeably, the legal definitions for having SEN and for having a disability are different. The use of the terms in this guidance reflects those definitions.

Legal language

‘Must’

Where this guidance uses the word ‘must’, these reflect legal obligations in legislation (primary or secondary) or case law that are essential to follow, with no exceptions. These legal obligations are not imposed by the DS Act but, rather, are existing obligations under other legislation.

Note that some of these obligations may be framed in such a way as to apply them specifically to people with Down syndrome, but this does not restrict that obligation solely to people with Down syndrome. If the legal obligation covers people with conditions other than Down syndrome, then it must be complied with for those people as well.

‘Should’

Where the term ‘should’ is used, the relevant authorities are expected to follow the recommendation unless there is good reason not to. Departures from the guidance and the reasons why should be documented.

‘May’, ‘can’ or ‘could’

Where the terms ‘may’, ‘can’ or ‘could’ are used, this refers to guidance to be followed wherever possible as examples of good practice.

‘Having due regard’

This guidance is given under section 1 (1) of the DS Act. Under section 1 (2) of the DS Act, relevant authorities must have due regard to this guidance in the exercise of their relevant functions.

‘Having due regard’ means that those bodies must give careful and meaningful consideration to the guidance when exercising their relevant functions. They should:

consider whether and how the guidance can be applied in the exercise of those functions
take into account any countervailing (opposing) factors that it is proper and reasonable for them to consider
consider this guidance as part of the process of carrying out those functions
record the steps they have taken in having due regard to this guidance, including documenting any departures from it and the reasons why

Question 5

1. Accessible and person-centred services

Accepted Answer

This section provides guidance on making services and support person centred and accessible to people with Down syndrome, including information on:

reasonable adjustments
mental capacity
safeguarding
advocacy
workforce training

This section underpins the whole guidance and should be considered in relation to all services it describes.

This section is for:

all public services, including those who plan for or provide these services
people with Down syndrome, their families and carers, and the wider public to see what services and support they can expect to be offered

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation, which is considered a ‘relevant function’ under the DS Act, as well as wider legislation that is relevant to support for people with Down syndrome:

People with Down syndrome should have access to information and advice they can understand, and communication support they may need. Down syndrome is typically associated with an uneven speech, language and communication profile, combining significant challenges in some areas with relative strengths in others. People with Down syndrome are very likely to experience challenges with communication, including (but not limited to) difficulties with:

articulation and expressing themselves
fluency and word-finding
social communication

There are typically receptive challenges for both spoken language and read language.

Effective communication is essential to ensure appropriate care and respect for people’s rights. Therefore, it is important that the communication needs of the person in question are taken into account by staff and, where necessary, staff have appropriate training on how to meet these needs. For example, professionals frequently report that Down syndrome-specific training enhances their confidence and capability in supporting people to thrive across educational, health and social settings.

Professionals should be aware that people with Down syndrome are likely to have specific communication needs and should be able to access speech and language assessment and support in a timely manner. Some people will need support to communicate using a range of alternative or augmentative communication methods, which should be made available, and, where needed, professionals with the appropriate training should work with people to ensure that their preferred communication approach is used and understood.

In all cases, information should be accessible and additional support should be available. The Accessible information standard (AIS), which all health and adult social care providers must have regard to, sets out the recommended approach to meeting the communication needs of patients and carers with a disability, impairment or sensory loss.

This could include:

providing information in an easy read format (a way of presenting information to make it accessible and easier to understand)
checking that language is clear and unambiguous, and that it has been understood
the use of visual or audio aids
arranging communication professionals at appointments if this is needed. For example, Makaton - a language programme that combines signs, symbols and speech - is often used to support people with Down syndrome with their communication. If a person needs an interpreter, such as a Makaton or British Sign Language (BSL) interpreter, one should be provided

The AIS sets out that providers should:

ask people if they have any information or communication needs and find out how to meet their needs. If they cannot express this, this may be done by accessing information about their needs from another source
record those needs clearly and in a consistent way, using defined clinical terminology and agreed English definitions
clearly highlight or flag in the person’s file or notes that they have information or communication needs and how to meet those needs
take steps to ensure that information is accessible and easy to understand, and that communication support is available on request

The AIS also states that patients, service users, carers and parents with a disability, impairment or sensory loss should:

be able to contact, and be contacted by, services in accessible ways (for example, by email or text message), focusing on offering contact using the form that best supports accessible communication for the person. If this is inappropriate, a third party could be provided with the information to communicate meaningfully
receive information and correspondence in formats that can be easily read and understood - for example, in audio, braille, easy read, plain English or large print
be supported by a communication professional at appointments if this is needed to support conversation - for example, a BSL interpreter
get support from health and care staff and organisations to communicate - for example, to lip-read or use a hearing aid

Reasonable adjustments

Under the Equality Act, public bodies including health and social care organisations must make reasonable adjustments to services so that people with a disability, including Down syndrome, can access support without being at a substantial disadvantage. The duties that all public services have under the Equality Act are set out in the ‘Equalities and application of this guidance to people with other conditions’ section above. This is an anticipatory duty - meaning that services should consider reasonable adjustments in advance, rather than waiting for someone to ask for them and then responding.

Reasonable adjustments may, for example, include:

providing information (including appointment letters) in easy read or another accessible format
allowing a person who has Down syndrome to be accompanied at a meeting by a supporter
providing extra time for the person to complete an activity, communicate or get around
providing a longer appointment
scheduling appointments at quieter times of the day or allowing a person to sit or wait in a quiet area
escorting a person to their appointment

All adjustments should be person specific and identified with the person and their family or carer (where appropriate), anticipatory and reviewed on a regular basis.

The reasonable adjustment flag was developed by NHS England to enable health and care workers to record, share and view details of reasonable adjustments across the NHS and publicly funded social care, wherever the person is seen or treated, without the person having to repeat information about what they need. The use of the flag is supported by information standard DAPB4019: Reasonable Adjustment Digital Flag published in 2023.

The reasonable adjustment digital flag helps to ensure that care is equitable for disabled people as required by the Equality Act.

Mental capacity

People with Down syndrome should always be supported to make their own decisions where they can. Many people with Down syndrome are able to make every decision about their lives. In some cases, however, a person with Down syndrome may lack capacity to make a specific decision at a specific time.

The Mental Capacity Act 2005 (‘the MCA’) says that a person must be presumed to have the mental capacity to make a decision. But, if there is a proper reason to doubt that capacity, a capacity assessment should take place.

The needs of people with Down syndrome are different for each person and it should never be assumed that a person with Down syndrome lacks mental capacity to make a decision simply because of their diagnosis.

If someone needs help to make a decision, they should be supported to do that as much as possible. If they cannot make an important decision for themselves, a decision should be made in their best interests. A ‘best interests’ decision is a legal framework within the MCA requiring that any action or decision made for a person who lacks the capacity to make it themselves must be done in their best interests. The decision-maker must:

involve the person as much as possible, considering their past and present wishes, feelings, beliefs and values
consult with others who know them well, such as family and friends

Under the MCA, staff working with people who lack or may lack capacity to make the specific decision in question must follow the 5 statutory principles set out in section 1 of the MCA. Local authorities, NHS commissioners and NHS providers should ensure that these principles are followed.

When a person has been assessed as lacking the capacity to make a specific decision that needs to be made, the decision-maker should make a ‘best interests’ decision under section 4 of the MCA. Local authorities and NHS commissioners and providers should ensure that, when a best interests decision is being made, the decision-maker follows the section 4 checklist. In exercising their functions under the MCA, local authorities and NHS commissioners and providers should ensure that staff comply with the requirements of the act, as well as have regard to the associated Mental Capacity Act Code of Practice and the Mental Capacity Act 2005: Deprivation of Liberty Safeguards Code of Practice.

In certain circumstances, the MCA says that a person (including someone with Down syndrome) must be provided with an independent mental capacity advocate (IMCA) by the relevant local authority. This happens when:

the person is aged 16 or over
a decision needs to be made about:
- the provision of serious medical treatment
- the provision of, or a change in or review of, certain long-term accommodation (such as a hospital or residential accommodation)
the person lacks capacity to make that decision
there is no one independent of services, such as a family member or friend, who is ‘appropriate to consult’

IMCAs must also be instructed in certain cases for people who are being assessed for, or who are subject to, the Deprivation of Liberty Safeguards under the MCA.

Sometimes it may be appropriate to deprive someone with Down syndrome of their liberty within the meaning of article 5 of the European Convention on Human Rights. In these circumstances, local authorities, NHS bodies and NHS trusts or care providers can only deprive a person of their liberty in accordance with lawful procedures and appropriate legal safeguards. These include:

the frameworks provided by the Mental Health Act 1983 (the ‘Mental Health Act’)
the Deprivation of Liberty Safeguards under the MCA, if the adult is in a hospital or a care home
by an order of the Court of Protection, if the person is in another setting such as a family home or a supported living facility (or is aged 16 or 17)

The Code of Practice: Mental Health Act 1983 provides guidance on the interface between decision-making under the MCA and the Mental Health Act. Where there is an option, professionals should decide which act is most appropriate to apply in each individual case.

Safeguarding

Safeguarding partners must make arrangements to safeguard people with Down syndrome in their local areas. Safeguarding includes:

providing early and targeted help, support and protection to prevent safeguarding issues occurring
actions to respond to safeguarding concerns and issues

It requires collaborative multi-agency working across statutory and voluntary, community and social enterprise (VCSE) agencies based upon the individual needs of the person and their family or carers.

Evidence demonstrates that disabled children, young people and adults, including people with Down syndrome, are more likely to experience abuse (see reference 3) as a result of multiple factors and because they are likely to have enhanced vulnerabilities. Safeguarding partners should ensure that:

they have robust policies and responses in place that recognise, identify and respond effectively when there are safeguarding concerns about someone who has Down syndrome
appropriate services are following reasonably adjusted approaches that result in equal access to protection, advice and support

Safeguarding children and young people

Child safeguarding issues can often be complex and multifaceted and, when a child has a disability, this both increases the risks they face and requires consideration to ensure the safeguarding response is reasonably adjusted and appropriate.

Various statutory duties are placed on 3 local safeguarding partners - local authorities, ICBs and chief officers of police - as well as other relevant safeguarding partners, to ensure the protection and welfare of children and young people with Down syndrome.

The Children Act 2004, particularly sections 10 and 11, requires that safeguarding partners must make arrangements to work together, and with relevant agencies including education, to safeguard and promote the welfare of all children in their local areas, including those with Down syndrome. Sections 16E to 16K of the act set out the roles and responsibilities of safeguarding partners, specifically the local authority, the ICB and the police force.

The way in which these organisations and agencies work together at a local level is known as multi-agency safeguarding arrangements, which should be published by each local area, in accordance with Working together to safeguard children statutory guidance.

Children and families may receive help as part of early help services or disabled children may receive support under section 17 of the Children Act 1989. Under section 17, local authorities have a general duty to promote and safeguard the welfare of children in need in their area by providing a range of services appropriate to those children’s needs where the local authority deems it appropriate.

Whenever there is reasonable cause to suspect that a child is suffering or is likely to suffer significant harm, there should be a multi-agency strategy discussion involving safeguarding partners and relevant agencies. Should it be decided to initiate an enquiry under section 47 of the Children Act 1989, the local authority may seek an emergency protection order, child assessment order, care order or supervision order. Where a local authority concludes that certain action should be taken to safeguard and promote the welfare of a child, it must take forward that action, so far as it is both within their power and reasonably practicable for them to do so.

In accordance with the ‘Working together to safeguard children’ statutory guidance (linked previously), ICBs should set out in their annual reports how they have discharged their duties in relation to child safeguarding. ICBs should also report jointly with safeguarding partners on the activity they have undertaken in a 12-month period in respect of child safeguarding and how effective these arrangements have been in practice.

In taking forward their safeguarding activity, ICBs and providers of NHS-funded healthcare services should ensure they are compliant with NHS England’s Safeguarding accountability and assurance framework. This is applicable for safeguarding children and young people, as well as adults.

Chapter 3 of the Working together to safeguard children statutory guidance says that local authorities - with their safeguarding partners and any relevant agencies - should develop, agree and publish local protocols for assessments and support. A local protocol should set out clear arrangements for:

how cases will be managed once a child is referred into a local authority’s children’s social care services
who can act as a lead practitioner in supporting children and their families under section 17 of the Children Act 1989
governance to support effective decision making, including accountabilities
the process for case audits

These arrangements should set out how and when organisations and agencies should communicate with children and families, and clarify how organisations, agencies and practitioners undertaking assessments and providing services can make contributions, and share and seek information.

Safeguarding adults

As with children and young people, local authorities, NHS bodies including ICBs and a range of other organisations are required to meet statutory requirements to safeguard vulnerable adults at risk of abuse or harm. This will include adults with Down syndrome - particularly where adults are particularly vulnerable as a result of any long-term health condition or disability that means that they rely upon others for care and support.

The Care Act 2014 (the ‘Care Act’) provides the statutory framework for safeguarding adults, and offers guidance on how local authorities should work to prevent and tackle abuse, keep people safe, and promote wellbeing. Further information on these statutory requirements can be found below.

The Revisiting safeguarding practice independent report makes clear that local authorities and ICBs should ensure that commissioned services are safe, appropriate and outcomes focused. This includes removing or minimising any barriers to keeping people safe and well, and preventing or addressing any experiences of abuse or harm.

Under section 42 of the Care Act, a local authority must carry out a safeguarding enquiry where it has reasonable cause to suspect that an adult with Down syndrome in its area:

has needs for care and support
appears to be at risk of or is experiencing abuse or neglect
is unable to protect themselves as a result of those needs

The purpose of an enquiry should be to establish what, if any, safeguarding action is required and, if so, what and by whom.

Under section 43 and schedule 2 of the Care Act, local authorities must establish a safeguarding adults board (SAB) for their area. Alongside the local authority, membership of the SAB must include at a minimum the relevant local ICBs and the police force.

Under section 44 of the Care Act, local authorities and ICBs must, through the SAB, carry out safeguarding adults reviews (SARs). SARs are conducted in either of the following circumstances:

where an adult with care and support needs has either died and the SAB knows or suspects the death resulted from abuse or neglect (whether or not they knew this at the time of death)
where the adult is still alive, but the SAB knows or suspects they have experienced serious abuse or neglect, and there is reasonable cause for concern about how the SAB, members of it or other persons with relevant functions worked together to safeguard the adult

All members of the SAB and those organisations responsible for the person’s care and treatment must contribute and co-operate with the SAR where necessary.

Advocacy

It’s crucial that people with Down syndrome are as involved and in control as much as possible in decisions about their care and support needs. Where a person may not be able to make, understand or articulate decisions effectively or at all, local authorities have legal duties to make sure advocacy support is in place.

For example, adults with Down syndrome may struggle to understand or find it difficult to communicate issues relating to their safety and wellbeing. Under the Care Act, an advocate could help them state their wishes and views or secure their legal rights. Under the MCA, as explained in the ‘Mental capacity’ section above, an IMCA could support a person to make a decision.

Under sections 67 and 68 of the Care Act, local authorities must arrange for an independent advocate to be available to represent and support people with Down syndrome where both the following apply:

the person has substantial difficulty in being fully involved with their assessment, care and support planning and review, or safeguarding
there is an absence of an appropriate person available to support and represent them

Advocacy services provide support in a number of areas. For example, an advocate can help when a local authority is:

assessing the person’s needs
making or reviewing a care and support plan
dealing with a safeguarding enquiry and/or arranging for a SAR

Non-statutory advocacy (including peer advocacy and self-advocacy) is also important in helping people in situations where there is no relevant statutory advocacy role, and to support people to develop their skills in speaking up for themselves. For example, People First is a national self-advocacy organisation for, and run by, people with a learning disability.

Similarly, it can be difficult for children to have a voice. Under section 26A of the Children Act 1989, local authorities are required to make arrangements for the provision of independent advocacy services for certain children and young people. This duty applies to looked-after children, children in need and care leavers, who can request an advocate at any time. Advocates will ensure that the person’s views, wishes and feelings are listened to and considered in decisions. Local authorities should adhere to statutory guidance on providing effective Advocacy services for children and young people.

Workforce education and training

Staff may need education and training to support them to deliver services to people with Down syndrome. In this case, raising awareness and understanding of the diverse needs of people with Down syndrome is very important to effective services and support. Training for professionals working within health, social care, housing, education settings and beyond is important to help build this knowledge base and inform plans to support these needs.

Equality and diversity training

All bodies, including public sector bodies, discharging a function of a public body should ensure that their staff receive robust equality, diversity and inclusion training to best meet their public sector equality duty (which is found in the Equality Act). This includes any organisation delivering services under, for example, an NHS standard contract.

It is crucial that professionals working with people with Down syndrome receive the necessary training to help reduce discrimination, ensure fair treatment and build understanding of the diverse needs associated with Down syndrome.

There are several sources of good practice that public bodies could consider when choosing the equality, diversity and inclusion training to be received by their staff. NHS Employers, for example, has published Equality, diversity and inclusion training: a good practice guide, which sets out a framework for how NHS organisations can deliver such training.

Public bodies should also consider the intersectionality of other protected characteristics for people with Down syndrome. For example, a person with Down syndrome may be from an ethnic minority community or may identify as LGBTQ. Staff should be trained to understand the impact of the different protected characteristics that people may have as well as their Down syndrome diagnosis.

It is essential that health and care staff working with adults and children with Down syndrome have the right skills, knowledge and training to enable them to provide high-quality care and support.

All health and adult social care services that are registered with the Care Quality Commission (CQC) must ensure that their staff receive such appropriate support, training and professional development as is necessary to enable them to carry out the duties they are employed to perform - as required by regulation 18 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014.

Under the Health and Social Care Act 2008 (as amended by the Health and Care Act 2022), CQC-registered health and social care providers must ensure staff receive training on learning disability and autism appropriate to their role. The Oliver McGowan Mandatory Training on Learning Disability and Autism is the government’s recommended training package to meet this requirement. Some staff who work frequently with people with Down syndrome may require additional training on Down syndrome.

The Oliver McGowan code of practice guides providers on how to meet the statutory training requirement. It was published and laid in Parliament on 19 June 2025, and became final on 6 September 2025. The code sets expectations on learning disability and autism training content and delivery, ensuring that health and care staff are sufficiently trained to effectively work with people who have a learning disability and autistic people, including when they may also have Down syndrome.

Professionals working outside of CQC-regulated services would also benefit from such training. This will help build the awareness, understanding and skills required to effectively care or deliver services for people with Down syndrome, who often have a learning disability and may have a co-occurring diagnosis of autism. Local authorities and NHS bodies may also wish to refer to the Statutory guidance to support implementation of the adult autism strategy, published under the Autism Act 2009, for further detail on supporting autistic people.

In designing local training offers for staff, commissioners and providers should co-produce this training with people with a learning disability and their families and carers, including people with Down syndrome. This includes co-production of training materials and/or planning for the provision or delivery of training. This could include working with people with Down syndrome to understand how training might be tailored to build awareness and understanding around specific needs. The ‘Involving people with lived experience guidance’ PDF on the NHS England workforce, training and education resources page describes how to involve people with a learning disability and autism in designing and developing local training offers.

Commissioners and providers of health and care services should have regard to the Oliver McGowan code of practice when designing and delivering their local training offers. CQC will take into account the code when assessing whether or not registered providers are meeting the legal requirement. All registered providers will need to ensure that staff receive training appropriate to their role to comply with the law and must be prepared to demonstrate to CQC how their chosen approach meets the code.

Workforce requirements within educational settings

Educational support tailored to individual needs and settings is essential for maximum academic progress and social inclusion for children and young people with Down syndrome. Practitioners working in education settings should understand the needs of the pupils they educate and, where they have pupils with Down syndrome, this includes an awareness and understanding of the learning profile associated with Down syndrome.

‘Annex: resources and examples of good practice’ includes resources produced by third-sector organisations that can help teachers to extend their knowledge on how to support children and young people with Down syndrome.

There are many qualifications and training requirements for the education workforce, including national plans to train teachers who support learners with SEND. Qualification requirements for those working in early years settings are outlined in the Early years foundation stage statutory framework, which is given power through the Early Years Foundation Stage (Welfare Requirements) Regulations 2012. To meet the requirements to work in staff-to-child ratios as qualified members of staff, staff must have an approved (‘full and relevant’) qualification that is recognised by the Department for Education (DfE) as meeting its criteria. Approved qualifications are set out on the Early years qualifications list.

For professionals working in schools, initial teacher training (ITT) is underpinned by the Education (School Teachers’ Qualifications) (England) Regulations 2003. This includes the requirements for trainees to obtain qualified teacher status (QTS) after an end-point assessment against the teachers’ standards. For ITT courses that lead to QTS, ITT providers accredited by DfE under the ITT criteria must incorporate the ITT core content framework (CCF) in full as a basis for their course curricula.

Teacher induction after obtaining QTS is underpinned by the Education (Induction Arrangements for School Teachers) (England) Regulations 2012. During induction, early career teachers complete training based on the Early career framework (ECF). Both the CCF and ECF include a section on adaptive teaching that references the SEND code of practice: 0 to 25 years and the need for teachers to work with the SEND co-ordinator and other professionals, and support SEND pupils. All teachers must meet the teachers’ standards, which set the minimum requirements for teachers’ practice and conduct. These standards set clear expectations that teachers must understand the needs of all pupils, including those with SEND. From September 2025, the CCF and ECF are being replaced by a combined and updated Initial teacher training and early career framework, which contains more content related to adaptive teaching and SEND.

There is no legal or regulatory requirement for those teaching in the further education (FE) sector to hold a specific teaching qualification or professional status - this is at the discretion of individual employers. In practice, most sector employers consider FE teachers to be fully qualified if they hold a relevant teaching qualification at level 5 or above - such as a Diploma in Teaching (Further Education and Skills) or a Postgraduate Certificate in Education (PGCE) - or have completed a Learning and Skills Teacher apprenticeship at level 5.

From September 2024, all courses for FE teacher training that attract public funding must be based on the occupational standard for learning and skills teachers. The occupational standard sets out the skills, knowledge and behaviours that effective FE teachers require, and includes a core duty to:

work in a manner that values diversity, and actively promote equality of opportunity and inclusion by responding to the needs of all students.

Question 6

2. High-quality and holistic healthcare

Accepted Answer

This section describes the health services and support that a person with Down syndrome may access throughout their life, including support before and after birth and during childhood so that they have a good start in life. It sets out information about:

responsibility for planning and delivering health services
reasonable adjustments to care that can make it easier for people with Down syndrome to access the support they need

This section is for:

people who plan NHS services
people who provide health services in the community such as general practitioners (GPs), community health providers, dentists, pharmacists and opticians
people who provide health services in hospitals
paid carers of people with Down syndrome
people with Down syndrome, their families and carers, and the wider public to see what services and support they can expect to be offered

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation, which is considered a ‘relevant function’ under the DS Act, as well as wider legislation that is relevant to support for people with Down syndrome:

Our healthcare aspirations for people with Down syndrome

We want every person with Down syndrome to receive high-quality, person-centred and holistic care, delivered by staff who understand their needs, including their wider health risks and co-occurring health conditions.

To achieve this ambition, staff working in health services should be aware of the need to protect and respect the rights of people with Down syndrome, thereby ensuring they receive measurable, evidence-based care and treatment, equitable to that of the general population.

People with Down syndrome are more likely to experience certain health conditions than other people in the population. For example, people with Down syndrome are at greater risk of:

heart conditions
gastrointestinal disorders
issues with hearing and vision
musculoskeletal disorders
dementia

People with Down syndrome have a lower life expectancy than the general population. The average life expectancy of a person with Down syndrome is now approximately 60 years. This is much younger than that of the general population, but it has increased substantially in recent years (see reference 4).

Our goal is to ensure that people with Down syndrome receive the right care at the right time to help them live well for longer. To achieve this, it is important that healthcare professionals understand the specific health and developmental needs of people with Down syndrome so that appropriate services can be put in place. For example, we know that many people with Down syndrome may experience diagnostic overshadowing (see reference 5) where health professionals wrongly attribute certain symptoms solely to Down syndrome or a learning disability overlooking other health concerns, issues or illnesses. This can impact the care and treatment received as it can lead to the belief that there is nothing that can be done to improve symptoms and, in some cases, has led to the premature and avoidable deaths of people with Down syndrome.

It is also important to consider what tertiary health prevention activity may be necessary to reduce the impact of the health and development needs associated with Down syndrome. This includes, but is not limited to, speech and language therapy (SLT), occupational therapy and physiotherapy intervention.

Listening to the person with Down syndrome and involving family members and carers in the person’s care is crucial to improving health outcomes - family members know their relative, including what is and is not typical behaviour, how to communicate with them, and what their individual needs are. It is important to make every effort to communicate with the person themselves - in combination with family and carers, if necessary - to get a full picture of a person’s health.

The health needs of people with Down syndrome

It is important to take account of the particular health needs people with Down syndrome are likely to need support with, including co-occurring health conditions.

People with Down syndrome may have particular needs in relation to:

cardiac issues such as heart disorders and defects that affect the normal working of the heart. Symptoms can include shortness of breath, chest pain, blue-coloured skin and nails, and getting tired easily. Around half of all children with Down syndrome are born with a heart condition
respiratory issues - people with Down syndrome may be more vulnerable to having frequent respiratory infections, such as pneumonia
gastrointestinal issues, such as issues with their airways and digestive system. Common problems include vomiting and diarrhoea, constipation, food intolerance, Hirschsprung’s Disease, abdominal pain and difficulties with toilet training among children with Down syndrome
conditions such as diabetes and thyroid disorders - these can cause symptoms such as tiredness, slow growth, weight gain, constipation, sensitivity to cold, hair loss, dry skin, diarrhoea and anxiety
problems with their joints and muscles, which can cause pain and lead to issues with posture and mobility. This can be caused by several reasons, such as arthritis, low muscle tone, lax ligaments and hypermobile joints
underlying neck instability - although significant damage caused by neck instability is rare and most people have mild early warning signs, it can result in paralysis and, in extreme cases, death (see reference 6)
increased risk of infections and these infections can be more difficult to treat. People with Down syndrome also have a higher prevalence of autoimmune disorders, such as type 1 diabetes and coeliac disease
issues with hearing, which can impact the development of speech, language, behaviour and social skills. Difficulties include conductive hearing loss due to glue ear and age-related hearing loss
issues with their vision, such as short-sightedness, long-sightedness and astigmatism. There is also an increased incidence of disorders such as congenital cataracts, squint and glaucoma
their teeth - this includes differences in the development and structure of teeth, which can lead to differences in oral and dental health. People with Down syndrome may also be more prone to gum disease
screening for blood disorders - people with Down syndrome have a higher risk of developing blood disorders, including leukaemia (blood cancer), particularly in childhood
dementia - Alzheimer’s disease and symptoms of dementia affect adults with Down syndrome more frequently and the onset of dementia tends to occur earlier in life
feeding, diet and weight gain and growth - people with Down syndrome may experience challenges with growth and being overweight, as well as difficulty accessing nutrition information and physical activities. Some studies show that people with Down syndrome have a slower metabolism, burn calories more slowly and store more fat (see reference 7)
sleep - including sleep-related breathing disorders (also known as sleep apnoea), difficulty settling, frequent night waking and parasomnias
their mental health and wellbeing, such as with depression and anxiety. For example, typical features of depression in people with Down syndrome include sleep disturbance, weight loss and tiredness
having multiple health conditions - Down syndrome is associated with an increased incidence of numerous co-occurring conditions. These can include autism, attention deficit hyperactivity disorder (ADHD), gastroesophageal reflux, infantile spasms and scoliosis
an unexplained regression in their daily lives, such as their abilities to communicate, their sleep quality, and changes to their personality and behaviour

While the above health issues are well documented in relation to the needs of people with Down syndrome, it is critically important for healthcare professionals to recognise that these are by no means exhaustive. People with Down syndrome can have any illness, not just those illnesses or health needs more commonly associated with the condition. The primary objective must always be to ensure that a person with Down syndrome receives a comprehensive assessment that proactively considers biological, psychological and social factors currently influencing their presenting needs.

Designing and planning health services

Effective planning and leadership at a local system level are crucial to ensuring people with Down syndrome are able to access joined-up health, social care and education services. Health and care services must implement the reasonable adjustment digital flag as mandated by the Information Standard - further information on the flag and reasonable adjustments can be found in section ‘1. Accessible and person-centred services’ above. This will help ensure that resources are used effectively and that policies are implemented successfully.

Local authorities must promote the efficient and effective operation of a market in services for meeting care and support needs in their area - with a view to ensuring that people have a variety of high-quality services to choose from and the information to make an informed decision. In doing this, the local authority must have regard to various matters, including the current and future likely demand for services.

ICBs are NHS organisations responsible for planning and arranging health services for their local population. As strategic commissioners, ICBs focus on:

providing system leadership for population health
setting evidence-based and long-term population heath strategy
working as healthcare payers to deliver this, maximising the value that can be created from available resources

Every ICB and its partner local authority (or authorities) with responsibility for commissioning social care must establish a statutory joint committee called the integrated care partnership (ICP), which may appoint additional members concerned with improving the health and care of the population. ICPs are joint committees formed between ICBs and their partner local authorities. ICPs are the convenors of partners in integrated care systems (ICSs), with the flexibility to appoint additional members from sectors such as housing, VCSE and social care.

ICPs have a statutory duty to prepare the ICS integrated care strategy setting out how commissioners in the NHS and local authorities - working with wider partners - can deliver more joined-up, preventative care. This includes addressing how health and care needs could be met more effectively through arrangements between NHS bodies and local authorities. ICSs are partnerships of organisations that:

come together to plan and deliver joined-up health and care services
improve the lives of people who live and work in their area

The Secretary of State for Health and Social Care has issued statutory guidance on the preparation of integrated care strategies to ICPs to help them develop their integrated care strategy, which they must have regard to.

System planning and leadership

Under the National Health Service Act 2006 (as amended by the Health and Care Act 2022), ICBs and their partner NHS trusts are required to produce a joint forward plan - updated annually - setting out how they will exercise their functions over the next 5 years, including the ICB’s plans as a commissioner. In preparing their plan, they must have regard to the integrated care strategy prepared by the ICP and the joint local health and wellbeing strategies produced by local authority health and wellbeing boards (HWBs) having considered the local joint strategic needs assessment (JSNA). As part of this, ICBs are encouraged to consider the needs of people with Down syndrome in planning processes.

Section 26 of the Children and Families Act 2014 (the ‘Children and Families Act’) requires the local authority, ICB and NHS England to make arrangements about the education, health and care (EHC) provision to be secured for children and young people with SEN and those with a disability in their area. This must include arrangements for considering and agreeing the EHC provision reasonably required by the learning difficulties and disabilities that result in children and young people with SEN, and by the disabilities of children and young people in their area. It does not specify the form that the arrangements should take - this should be agreed locally.

ICBs, as the local leaders and commissioners of many NHS services, are well placed to work across local NHS services and support them to meet the needs of people with Down syndrome. In the NHS, ICBs are the organisations responsible for planning and purchasing healthcare services for their local population.

Commissioners should make use of information about the health needs and incidence of co-occurring conditions for people with Down syndrome when discharging their wider duties to plan, commission and provide services for people in their area. In practice, this means commissioners having a good understanding of the number of people with Down syndrome in the local area, and considering what needs they may have, to effectively commission appropriate services.

It is up to partners in each local area to agree how they will do this. As set out in appendix 1 of NHS England’s Guidance on developing the joint forward plan, ICBs and partner trusts have a duty to involve people and communities in decisions about the planning, development and operation of the services they commission and provide. ICBs must also enable patients to make informed choices about the health services available to them.

To identify and predict how area needs may change over time, local authorities and ICBs should use:

demographic data
population health data, including data from primary care, secondary care and acute services
social care data
insights they gather from engagement with people with Down syndrome, and their families and carers

For example, improvements in care have resulted in significantly improved life expectancy for people with Down syndrome (see reference 4). A growing number of people with Down syndrome are therefore expected to outlive their parents, which is likely to result in more people requiring additional support later in life as their parents become less able to support them (see reference 8).

Executive leads on integrated care boards

NHS England published statutory guidance on Executive lead roles within integrated care boards in May 2023, 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 the following population groups:

children and young people (aged 0 to 25)
children and young people with SEND
safeguarding of children and adults
learning disability and autism (all ages)
Down syndrome (all ages)

These executive leadership roles are added to the statutory requirement for each ICB to include at least one mental health lead.

The guidance makes clear that every ICB should identify a member of its board who has explicit responsibility for people with Down syndrome of all ages. 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 this statutory guidance when making commissioning decisions at a system and local level.

ICBs should be open and transparent about who holds these roles and make this information publicly available.

Co-production with people with Down syndrome, their families and carers

NHS commissioners and providers should ensure the inclusion of people with a learning disability, including people with Down syndrome and their families and carers, in developing plans and local decision-making in relation to both learning disability and wider healthcare services. Partnership with people with Down syndrome and their families should start as early as possible.

NHS England has produced further Working in partnership with people and communities: statutory guidance to help providers co-produce plans and service designs. Resources to support co-production can be found in the accompanying ‘Annex: resources and examples of good practice’.

Co-production is underpinned by multiple general duties on NHS bodies relevant to engagement and co-production with people and communities, as set out in the National Health Service Act 2006, including a duty for:

ICBs to promote involvement of patients, and their carers and representatives, in decisions relating to their care or treatment and the prevention or diagnosis of illness in the patient (section 14Z36)
NHS England and ICBs to involve patients or potential patients, and their carers and representatives, in planning and decision-making in respect of commissioning arrangements of health services (sections 13Q and 14Z45)

Reducing inequalities

Under the National Health Service Act 2006 - specifically sections 13G, 13N, 14Z35 and 14Z42 - NHS England and ICBs have specific duties in relation to reducing inequalities. These duties capture all disabled people, including people with Down syndrome.

NHS England and ICBs must have regard to the need to reduce disparity in access to healthcare and reduce inequalities in outcomes achieved by the provision of health services between people who have a learning disability (which can include Down syndrome) and people who do not. For example, race, religion and learning disability and, in this case, Down syndrome, intersect.

As such, public sector bodies should consider intersectionality and how this is captured in any needs assessments. It is important for staff to understand intersectionality, which should include a learning disability, so that they understand when commissioning and delivering services how, for example, race, ethnicity and religion may intersect with Down syndrome and lead to further compounded health inequities.

There are tools to help trusts measure the quality of care they provide to people with Down syndrome, including NHS England’s Learning disability improvement standards for NHS trusts.

Using data to inform future health service provision

People with Down syndrome may have a specific set of health needs that can change over time, which can have implications for provision and timing of healthcare screening, intervention and treatment. Therefore, it is important that appropriate data collections are in place to capture health and care activity in relation to children, young people and adults with Down syndrome.

Access to high-quality and complete data allows health commissioners, providers and local systems to better understand the needs of the communities they serve and effectively plan future service delivery.

Every ICB must produce an annual report on how it has discharged its functions in the previous financial year. The minimum contents of the annual report are prescribed by the National Health Service Act 2006 (as amended by the Health and Care Act 2022). Section 14Z58 of the National Health Service Act 2006 requires that an annual report must include an explanation as to how an ICB has discharged its legal duties on public involvement and consultation.

NHS England has published guidance to help ICBs prepare their annual reports, including how the annual reports should show how intelligence about people’s needs and experiences was gathered, and this informed decision-making, governance and quality-checking.

In accordance with section 250 of the Health and Social Care Act 2012, and data information standards DAPB0011: Mental Health Services Data Set and DAPD1069: Community Services Data Set, all providers of NHS-funded mental health and community services should ensure that patient-level data about all NHS-funded activity - including those who are assessed or receive care for a suspected or diagnosed learning disability - are fully and correctly reported to these data sets.

This will include some mental health and community services activity relating to people with Down syndrome. This covers NHS providers and independent providers who are wholly or partially funded by an ICB or by NHS England. Primary care networks should also ensure their learning disability registers are as up to date as possible, including the identification of people with Down syndrome.

Where learning disability annual health checks are offered by GPs (to people aged 14 and above), the GP maintains a learning disability register. For patients on the learning disability register, annual learning disability health checks and the completion of a health action plan are incentivised in primary care through the Investment and Impact Fund. This also incentivises the recording of ethnicity for the patients on the register.

All organisations and people involved in processing personal data must meet their obligations and responsibilities under the Data Protection Act 2018 and the General Data Protection Regulation (GDPR). Data collected in relation to a person’s health, including as relates to Down syndrome, is special category data under the GDPR. Additional safeguards and conditions for processing this data therefore apply. Local authorities, NHS bodies and other organisations must ensure they are aware of, and adequately follow, all legal requirements relating to data protection. The Information Commissioner’s Office publishes UK GDPR guidance and resources in relation to GDPR requirements in England.

Delivering health services that meet the needs of people with Down syndrome

There are a range of services and interventions that commissioners and providers are expected to provide for children and adults with Down syndrome, and their families and carers, to protect, improve and support their health. High-quality community-based health services can support primary care to help keep children, young people and adults with Down syndrome well.

To ensure people with Down syndrome have access to the care they need, it is essential that commissioners and providers:

understand the needs of people in their locality with Down syndrome
ensure that reasonable adjustments are made to services in accordance with the person’s needs

See section ‘1. Accessible and person-centred services’ above for further information on workforce training and making reasonable adjustments for disabled people, which must be considered across all aspects of service provision.

The learning disability improvement standards request all NHS trusts to measure the services they provide to people with a learning disability against a range of different metrics. These metrics are revised annually and developed by people with lived experience, clinical staff and managers. The information gathered is then nationally benchmarked to provide an accurate understanding of both where services are excelling and there are areas for improvement.

Neonatal and postnatal care

Where it has been identified that a parent may be carrying a baby that has Down syndrome, they should be offered appropriate, timely and compassionate care, support and information. Diagnostic testing, investigations and examination, as well as effective discharge planning and postnatal care for the parents and the baby, should be provided and planned in advance, and appropriate services put in place across the ICB, irrespective of where the mother lives and gives birth.

For new parents, the neonatal and postnatal period is an important point to build awareness of the specific and individual needs their child (child, baby or infant) may encounter. All newborn babies (including babies with Down syndrome) must be offered health newborn screening tests, including newborn and infant physical examinations, newborn blood spot screening and newborn hearing screening, in line with national NHS guidance on Newborn screening.

All parents with an antenatal diagnosis of Down syndrome meet the screen-positive criteria for screening examination of the heart and should be managed separately as part of the national screening pathway. Further information can be found in NHS England’s Newborn and infant physical examination (NIPE) screening programme handbook. They should be reviewed by a paediatric or neonatal consultant within 24 hours of the NIPE. Babies with postnatally suspected Down syndrome also require review by a paediatric or neonatal consultant within 24 hours of the NIPE. Ongoing referrals will be decided based on examination findings and genetic results.

Where the child has Down syndrome, health visitors should be involved with the child’s care until the child goes to school through regular contact with the family.

NHS commissioners and providers should have arrangements in place (with adequate fail-safe mechanisms to ensure outcome of attendance is reported) to offer parents a physical examination of their baby within 72 hours of them giving birth, including where the baby has Down syndrome. This physical examination should, among other screening tests, include a screening test of the baby’s eyes. NHS commissioners and providers should have processes in place to refer the baby for more tests should issues be identified. It is important to ensure that necessary mechanisms are in place to ensure onward referrals to specialist health visitor or children’s learning disability teams.

NHS commissioners and providers should have arrangements in place to offer parents a newborn hearing test for their baby within the first 3 months (ideally within the first 4 weeks). The newborn hearing screening should be offered to children with Down syndrome unless, for other reasons, they are not eligible. For further information on eligibility criteria, see the Surveillance and audiological referral guidelines.

Arrangements should be in place to refer babies with Down syndrome:

to hearing specialists should the newborn hearing test not demonstrate a clear response from one or both of the baby’s ears
for targeted follow-up (behavioural testing) at about 8 months of age

Children with Down syndrome should remain under the care of audiology and continue to have their hearing monitored regularly.

Universal support for families

Children’s early years are crucial to their development, health and life chances. There is a range of universal support available for families in this period.

The Healthy child programme guidance sets out the local public health, prevention and early intervention activities for all babies, children and young people aged 0 to 19 or up to 25 with SEND, funded through the public health grants to local authorities. These activities are wide ranging and include:

screening
immunisation
health and development reviews
health improvement
wellbeing and mental health
infant feeding
parenting

Health visiting teams are fundamental to how we support families to give their children the best start in life. They provide support from preconception to age 5. Their contact with parents, carers and children:

provides vital advice and support
helps ensure that health, development and safeguarding needs are identified early and the correct interventions are provided

Under regulation 5A of the Local Authorities (Public Health Functions and Entry to Premises by Local Healthwatch Representatives) Regulations 2013^{[footnote 4]}, local authorities must, so far as reasonably practicable, provide or offer the provision of health and development reviews to pregnant women and children (in the local authority area) at 5 specified stages before a child is 30 months old. Where needs are identified (including for children with additional needs due to Down syndrome), the health visiting service will either provide additional support directly or refer to NHS or local services as required.

The joint Department of Health and Social Care (DHSC) and DfE Family Hubs and Start for Life programme is also central to delivering support for babies, children and their families in the community. The programme provides funding to 75 upper-tier local authorities with high levels of deprivation. Family hubs offer support to families with children of all ages (aged up to 19, or 25 for those with SEND), but have a strong focus on the period from pregnancy to age 2. Family hubs can provide a range of support for families including:

help with infant feeding advice
parenting classes
help with the home learning environment
perinatal mental health support

Building on the Family Hubs and Start for Life programme and in line with the government’s Giving every child the best start in life strategy, from April 2026, Best Start Family Hubs will be rolled out in every local authority in England to provide:

wide-ranging help for families, such as parenting and early development
strong integration with and co-location of health services

Each Best Start Family Hub will have a child and family service professional specifically trained in working to support parents of children with additional needs. This will help identify children with SEND who may need extra help early on, making links with local early years settings and health services.

General practice

GPs play a crucial role in supporting the health of people with Down syndrome, with fundamental responsibilities in respect of addressing primary healthcare needs, co-ordinating care and supporting people to manage various health conditions.

Everyone with Down syndrome should be identified by their general practice as having Down syndrome and be recorded as such in their clinical record so that they can be identified on their GP learning disability register. Learning disability annual health checks and associated health action plans are an important way to regularly:

review various health needs someone with Down syndrome may have
identify any problems or issues as early as possible
offer them support and advice on how to stay healthy

Everyone with a learning disability, including people with Down syndrome, should be offered an annual health check from the age of 14. GPs should offer an annual health check and health action plan for people with a learning disability under the NHS Network Contract Directed Enhanced Service (DES).

National Institute for Health and Care Excellence (NICE) quality standard [QS187] Learning disability: care and support of people growing older recommends that GPs should offer an annual health check using a standardised template for all people over 14 with a learning disability. GPs should complete and issue a good-quality health action plan to accompany the health check.

To support the health check, GPs must make reasonable adjustments in accordance with the person’s individual needs to ensure that the person can get the most out of their annual health check. They should, where necessary, involve a family member, carer, supporter, healthcare professional or social care practitioner who knows the person well. Gillick competence should be assessed and, where necessary, an appropriate adult must accompany the person when they are under 16.

GPs, health visitors and paediatricians should:

consider assessment of the presence of health conditions known to be associated with Down syndrome and early intervention - particularly the:
- monitoring of developmental milestones
- early identification of delays to development
- referral to early intervention services where necessary (for example, SLT or occupational therapy)
consider immunisation and preventative care - including vaccination in accordance with the Complete routine immunisation schedule
make timely referrals to specialists where a specific need or concern has been identified - including, for example, in relation to cardiology or endocrinology (such as thyroid conditions and onset of diabetes)
make a baseline assessment for dementia when the person reaches 30
provide information, health education and support to people with Down syndrome and their families. This includes, among other things, giving advice on how to:
- manage health conditions
- understand specific needs
- recognise signs of ill health
- navigate the system and where to go for help
consider signposting to family hubs, which offer support to all babies and children, including those with Down syndrome, bringing services together to:
- improve access
- strengthen the connections between families, professionals, services and providers
- put relationships at the heart of family support

Optometry and eye care

People with Down syndrome are very likely to experience vision issues and are at a higher risk of a range of conditions relating to sight and vision. Compared with the general population, they are 10 times more likely to have a congenital cataract, and infantile glaucoma can also occur (see reference 9). Nystagmus is present in at least 10% of people (see reference 10).

To identify any early problems with their eyes, all babies should receive a routine eye screening within 72 hours of birth as part of the newborn physical examination and again at around 6 weeks of age. The UK National Screening Committee also recommends vision screening in school for children aged 4 to 5 years to look for reduced vision in one or both eyes.

As is the case for everyone, issues with vision can arise later in life among people with Down syndrome. Sight tests are recommended at least every 2 years and more frequently if considered clinically appropriate.

Free NHS sight tests are available for many, including for:

children under the age of 16, and under the age of 19 in full-time education
those aged 60 and over
people on low-income-related benefits
those diagnosed with diabetes or glaucoma, or considered at risk of glaucoma

Help is also available towards the cost of glasses or contact lenses for children and people on income-related benefits through NHS optical vouchers. Help with optical costs is also available through the NHS Low Income Scheme. We would expect providers of primary eye care services to inform patients of their eligibility to free NHS sight tests and optical vouchers. Further information on help with optical costs is available on the NHS website at Free NHS eye tests and optical vouchers.

To improve access and help address any health inequalities, a free NHS sight test is available to children and young people with SEND attending a special educational setting in England, where the establishment has chosen to host a service.

Commissioners and providers of eye care services must ensure reasonable adjustments are made so that people with a learning disability, including Down syndrome, are able to access services in the same way as other people. This might, for example, include practical adjustments to the environment or changes to the process. The government has published guidance on reasonable adjustments around Eye care and people with learning disabilities. Further guidance on reasonable adjustments can be found in section ‘1. Accessible and person-centred services’ above.

Audiology and hearing

NHS commissioners and providers should ensure that all people with Down syndrome have access to regular hearing tests. GPs should consider referring people with Down syndrome for hearing tests and wider audiology services, where appropriate.

People with Down syndrome are at higher risk of hearing loss or impaired hearing than the general population - research suggests between 51% and 74% of adults with Down syndrome have some degree of hearing impairment depending on the hearing loss criteria used (see reference 11). This can be caused during childhood by ‘glue ear’ - a fluid build-up in the middle of the ear that affects up to 35% of children with Down syndrome at birth - but there can be other causes too.

The newborn hearing test should identify any impairment to hearing at an early stage. Like vision, however, hearing can become impaired or lost later in childhood and/or adult life.

According to Ears, nose, throat and teeth guidance from the Down’s Syndrome Association, a child with Down syndrome should be offered a hearing assessment once or twice a year until the age of 6. A hearing assessment should be offered every 2 years from the age of 6, or more frequently if required. From the age of 35, an annual hearing assessment should be offered.

Free NHS hearing checks are available to all children and young people with SEND in special residential schools at school entry and then at transition points - such as when a child moves from primary to secondary school or secondary school to sixth form college - where the establishment has chosen to host a service.

Speech and language

It is very likely that people with Down syndrome will experience difficulties with speech, language and communication that can impact on relationships, learning and wellbeing. This can include challenges understanding and/or producing speech and/or language. This can be due to multiple factors, including hearing loss.

Where this is the case, people with Down syndrome will require support with communication and language development, and parents will often need help to learn new skills to support the development of their child. People with Down syndrome will often learn differentially to those without - they are often more visual learners, for example.

NHS commissioners and providers may offer people with Down syndrome and their families and carers a range of SLT services and interventions to support their communication, tailored to their specific needs. This should include early intervention services starting from birth, continuing through early years to support a good start in life, and then into primary and secondary school and beyond.

Local authorities and NHS bodies should work together to commission and provide relevant services to support people with Down syndrome and their families. This could include, for example, local authorities, ICBs and NHS trusts jointly working to embed SLT support in nurseries, schools and colleges. It is important to remember that communication needs are lifelong and do not stop at school age.

SLT services are crucial throughout the lifetime of people with Down syndrome - for example, on admission to hospital, in care settings or if there is concern about dysphagia at any point in their lives. Adequate SLT services, including staff with the relevant skills, must be commissioned by the ICB to meet the needs of their local population. The SLT intervention should be tailored to each person depending on need.

Depending on the person’s ability, this could also include enabling access to augmentative and alternative communication (AAC), including the use of technical equipment, such as tablets and apps. AAC comprises a range of techniques that can support or replace spoken communication. ICBs and local authorities should commission local AAC services to support eligible children and adults - which can include people with Down syndrome - who require support with their communication.

NHS England is also responsible for commissioning services for people with the most complex communication needs and should provide specialised AAC services where appropriate. NHS England has published Guidance for commissioning of AAC services and equipment.

Physiotherapy and occupational therapy

Many children and adults with Down syndrome may exhibit low muscle tone, decreased strength and/or delay in acquisition of motor skills in childhood. This can affect mobility and posture and the ability to carry out usual daily activities including using common household equipment in some cases. For example, low muscle tone and ligament laxity associated with Down syndrome can cause reduced muscle strength. Physiotherapy is important for supporting gross and fine motor skills and for building muscular-skeleton strength.

Physical disabilities, as well as a learning disability, can affect the ability of people with Down syndrome to participate in day-to-day activities. Depending on the person, occupational therapy can support them to increase their participation in these activities, including by recommending accommodations or adjustments to activities or environments.

An occupational therapist might also consider how a person’s sensory preferences, needs and challenges affect their participation in the daily activities they need and want to do. Where relevant, a sensory assessment will be used to identify appropriate, personalised approaches that support a person’s engagement in the environments and activities that are important to them. Collaboration between therapists, caregivers, schools, local authorities and others is essential to create support programmes that meet each person’s unique needs.

Physiotherapy may be required beyond childhood and throughout adulthood, but particularly in later life. As the person ages, there is likely to be a need to promote physical activity in relation to weight management and falls, and mobility management is often required. Twenty-four-hour postural care will also be needed if the person develops dementia. Appropriate services should be planned for and commissioned by the ICB.

Many children with Down syndrome will require additional support from allied health professionals - such as SLT, physiotherapy, occupational therapy, podiatry and orthotic, and audiology services - to ensure that they are able to meet their developmental milestones as soon as they can in the best way for them.

These services should be joined up so that families do not need multiple referrals, with a multidisciplinary approach that considers the person and the family needs. Staff should be appropriately skilled to work with people with Down syndrome.

Dentistry

ICBs should consider the specific needs of people with Down syndrome when commissioning primary, secondary and community dental services.

Children with Down syndrome may experience a delayed eruption of their teeth, and both children and adults with Down syndrome may be more susceptible to gum disease than the overall population. Effective oral health is linked to heart health (see reference 12) and therefore good oral hygiene is of paramount importance, as many people with Down syndrome are known to have impaired heart function.

Many people with Down syndrome need extra support or reasonably adjusted information to ensure they are able to understand advice and instruction in relation to oral health. These factors should be considered when commissioning dentistry services. NHS England has published an overall Clinical guide for dentistry in England and Clinical standard: special care dentistry. The government has also published guidance on the provision of Oral care and people with learning disabilities, which may include people with Down syndrome.

To improve access and help address any health inequalities, a free NHS dental check is available to children and young people with SEND in residential special schools and colleges in England, where the establishment has chosen to host a service.

As commissioners of primary, secondary and community dental services, ICBs should ensure processes are in place to plan and manage service provision. As part of this, ICBs should assess local needs, set minimum service standards, and ensure outcome and quality measures are agreed.

Mental health services

Access to community-based mental health and learning disability services

People with Down syndrome may need help with their mental health and wellbeing. Children, young people and adults with Down syndrome should be able to access community-based mental health and learning disability services as required. Under the Equality Act, reasonable adjustments in accordance with a person’s needs must be offered to ensure services are as easy to access for a person with Down Syndrome as anyone else.

This guidance does not set out all the mental health services that people with Down syndrome might be able, need or wish to access, but it gives examples of commissioner and provider responsibilities in respect of the range of services.

Further information on the government’s plans to reform the Mental Health Act to help ensure people get the support they need in the community, improving care and keeping people out of mental health hospitals, can be found below in the ‘Proposed mental health reforms’ part of this section.

NHS commissioners and providers should put arrangements in place to ensure that people with Down syndrome who live with severe mental illnesses can access the relevant community mental health services. For people with a learning disability, mental health services should always strive to work in partnership with their local learning disability services. As a result, care can then be tailored to meet their often unique biological, psychological and social needs.

Dynamic support registers

ICBs should include people with Down syndrome at risk of admission to a mental health hospital on a dynamic support register. A dynamic support register is a list that helps identify children, young people and adults with a learning disability and autistic people who are at risk of being admitted to mental health inpatient care if they do not receive the appropriate support in the community.

NHS England has issued a Dynamic support register and Care (Education) and Treatment Review policy and guide. This guidance sets out NHS England’s expectations for the implementation and use of dynamic support registers in England. Inclusion on the register must be subject to the person’s explicit consent or a best interest decision.

Local authorities should also, in carrying out their market function under section 5 (1) of the Care Act, have regard to any information held on the dynamic support register that the ICB has disclosed to them and seek to ensure the needs of people with a learning disability, which can include people with Down syndrome, can be met without detention.

NICE has published guideline [NG11] Challenging behaviour and learning disabilities on support and interventions for people with a learning disability whose behaviour challenges. Professionals and practitioners should take this guideline into account, alongside the individual needs, preferences and values of their patients or the people using their service.

Inpatient mental healthcare

Wherever possible, we want to see people getting the support they need in the community. However, there may be times when a person with Down syndrome may require treatment for a mental health condition that can only be delivered in hospital. Where hospital treatment is appropriate, this should be therapeutic, for the shortest possible time and the least restrictive possible.

There might be a heightened impact for people with Down syndrome who are in hospital away, or even far away, from their family and friends. It is also important to be aware of considerations when admitting a person with Down syndrome to a mainstream or general mental health ward compared with a learning disability ward.

As for all people in a mental health inpatient setting, it is important to start planning for a person’s discharge from hospital - and the community support, care and housing they may need to have put in place - as early as possible and, ideally, at the point of hospital admission. NHS England has published Brick by brick guidance on housing pathways to support hospital discharge for people with a learning disability and autistic people.

Local authorities and NHS commissioners and providers must ensure that staff performing functions under the Mental Health Act follow the requirements set out in the act and have regard to its code of practice, including in relation to people with Down syndrome who have a learning disability.

The code of practice provides statutory guidance to those carrying out specified functions under the act, including:

registered medical practitioners (including approved clinicians)
hospital managers and staff (including those of independent hospitals)
approved mental health professionals

The code also provides statutory guidance to registered medical practitioners and other professions in relation to the medical treatment of patients suffering from mental disorder.

Local authorities and NHS commissioners and providers should understand and take steps to consider less restrictive care options for people with a learning disability, including people with Down syndrome, carefully considering how to preserve the person’s rights and freedom of action.

Under section 130D of the Mental Health Act, hospital managers must provide information regarding independent mental health advocates (IMHAs) to certain detained patients and, under the Equality Act, make reasonable adjustments for this to happen - for example, providing a safe place for this meeting without staff present to ensure privacy and confidentiality. To support this, local authorities have a duty to commission sufficient, suitably trained IMHA services for their area.

Everything possible should be done to overcome barriers to effective communication. Hospitals and other organisations should make people with specialist expertise (for example, in BSL or Makaton) available as required.

Where relevant, information about a person’s detention (including their rights under the Mental Health Act) must be given to the patient both orally and in writing, including in accessible formats as appropriate and in a language the patient understands. In particular, patients should be given all relevant information, including on:

complaints
advocacy
legal advice
safeguarding
the role of CQC

Restrictive interventions in inpatient settings

People with a learning disability, including people with Down syndrome, may at times communicate distress using behaviours that could be perceived to be risky. This may in turn increase the likelihood of staff using restrictive practices in an attempt to reduce or manage risk. People with a learning disability (including those with Down syndrome) are more likely to experience environmental restraint in the form of seclusion or segregation than other groups of people.

The Human Rights Act 1998 (the ‘Human Rights Act’) sets out the fundamental rights and freedoms that everyone in the UK is entitled to. Public bodies (such as hospitals and mental health services) must uphold these rights. This includes the right to:

freedom from torture, inhuman and degrading treatment (article 3)
respect for private life including (but not limited to) autonomy, physical and psychological integrity (article 8)
non-discrimination (article 14)

There are a number of legal principles and frameworks that any use of restrictive practices must comply with - for example, the Mental Health Act and its code of practice, the MCA (for people 16 or over), and the Mental Health Units (Use of Force Act) 2018.

Disproportionate use of restrictive practices on certain groups of people, such as ethnic minority communities, autistic people and people with a learning disability, must firstly be recognised within services to actively reduce their use on these groups. It is essential that staff teams are supported to make reasonable adjustments in terms of adapted communication, where required, and ensuring people have access to independent advocacy.

Supporting physical health in inpatient settings

As set out in the section ‘The health needs of people with Down syndrome’ above, people with Down syndrome may need support with a range of co-occurring physical health conditions while they are in receipt of inpatient mental healthcare. Evidence has shown that, when in an inpatient setting for a period of time, people with a learning disability, including people with Down syndrome, have poor physical health outcomes, including increased weight and sedentary behaviour, which are linked to a range of health conditions.

Whenever someone with Down syndrome (or anyone with a learning disability) is admitted to hospital for a mental health condition, their physical health needs should be considered as part of a holistic healthcare plan that is co-produced and supported at all stages, and includes:

healthy diet
physical activity (ideally with others)
management of sedentary behaviour

Where someone’s weight is problematic, either over or underweight, a suitable diet should be developed in consultation with a dietitian or nutritionist who understands the additional needs of people with Down syndrome, particularly in relation to constipation management and appropriate fibre and liquid intake.

Care, (Education) and Treatment Reviews

ICBs should organise a Care (Education) and Treatment Review (C(E)TR) to take place when a person with Down syndrome who has a learning disability and/or is autistic is at risk of hospital admission or, if someone is in hospital, to help plan for their ongoing care. NHS England guidance on dynamic support registers and C(E)TRs says that, at the end of a C(E)TR, there should be an agreed action plan that has clear actions, each of which is allocated to a named person with a specific timescale for completion.

Community C(E)TRs aim to help health and social care organisations to identify and put in place additional support that might prevent a person with a learning disability, including people with Down syndrome, being admitted to a mental health inpatient setting. Reviews that take place when the person is in hospital can support good care and timely discharge.

C(E)TRs should involve the person and their family (including carers in the case of children and young people).

Proposed mental health reforms

Through the proposed reforms to the Mental Health Act, the government wants to help ensure that people get the support they need in the community, improving care and keeping people out of mental health hospitals. The reforms specific to people with a learning disability and autistic people are outlined as follows.

Grounds for detention

People with a learning disability and autistic people could only be detained under section 3 of the Mental Health Act if they have a co-occurring mental health condition that requires hospital treatment.

Detention under section 2 would still be possible for a maximum of 28 days for assessment.

The proposed changes would apply to part II only, which applies to civil patients (people admitted to hospital from the community), rather than those within the criminal justice system (covered in part III of the act).

Establishment of dynamic support registers

As set out in new section 125D of the Mental Health Act, ICBs would be under a duty to establish and maintain dynamic support registers of those who have risk factors for detention under part II of the act.

This is to improve monitoring of the needs of - and support for - people who may be at risk of experiencing a mental health crisis and being detained under the act.

Role of dynamic support registers in commissioning

New section 125E of the Mental Health Act provides that ICBs, when carrying out their commissioning functions, must:

have regard to dynamic support registers and the needs of their ‘at risk’ population
seek to ensure that the needs of people with a learning disability and autistic people can be met without detaining them under part II of the act

Section 125E also provides that local authorities, when carrying out their market functions^{[footnote 5]}, must:

have regard to any information disclosed to them by virtue of the dynamic support register
seek to ensure the needs of people with a learning disability and autistic people can be met without detaining them under part II of the act

Adherence to C(E)TRs

Responsible commissioners would be required to make arrangements to ensure that a C(E)TR is held following a patient’s admission to hospital.

Certain bodies would be required to have regard to its recommendations, meaning they are followed unless there is a good reason not to do so.

Provision of community support

The proposed changes to the detention criteria in part II of the Mental Health Act would only commence when there are strong community support provisions in place.

Transition from children’s to adults’ services

It is important to ensure a smooth transition period when a young person moves from children’s to adults’ services. Professionals from education, social care and health services should work with the young person with Down syndrome and their family and/or carers to develop a transition plan as early as possible.

Section 16 of the Care and support statutory guidance sets out local authorities’ responsibilities and duties relating to the transition from children’s to adults’ social care services under the Care Act.

NICE has set out quality standard [QS140] on Transitions from children’s to adults’ services, which covers all young people (aged up to 25) using children’s health and social care services who are due to make the transition to adults’ services. This includes:

young people with:
- mental health problems
- disabilities
- long-term, life-limiting or complex needs
- rare diseases
those in secure settings or under the care of local authorities

According to the SEND code of practice, which covers people with Down syndrome aged 0 to 25 years, a transition plan should be co-produced with the young person and, where appropriate, their family that identifies who will take the lead in co-ordinating care and referrals to other services. The young person should know who is taking the lead and how to contact them.

NHS bodies, alongside local authorities, should:

keep provision under review so any gaps in support between children’s and adults’ services can be identified and addressed
ensure there are arrangements in place to support young people with complex care needs - including people with Down syndrome - who are making the transition from children’s to adults’ services
put systems in place so that referrals can be made directly from any children’s service to the equivalent and relevant adults’ service without the need for a re-referral from, for example, GPs or consultants

Local authorities must also consider the transition to adulthood for young people who are vulnerable, disabled or need additional support, including the:

interface with services for young people aged 16 to 25. For example, school nursing teams should work with adults’ services to ensure a smooth transition, including to adults’ mental health services
transition of safeguarding support from children’s to adults’ services, which is vital to ensure that people with Down syndrome who are experiencing abuse or neglect are fully supported

In June 2021, the Chief Social Worker’s office worked with the sector to develop a knowledge briefing entitled Bridging the gap: transitional safeguarding and the role of social work with adults. This publication focuses on what transitional safeguarding is, and how good-quality adult social work can ensure that children who are transitioning into adulthood are protected from harm.

Identifying and responding to increased risk of dementia for people with Down syndrome

Dementia, including Alzheimer’s disease, affects adults with Down syndrome more frequently and at a younger age than the general population - the average age of diagnosis being 55 years old. Some research estimates that the lifetime risk of people with Down syndrome developing dementia is more than 90%.

For these reasons, the NHS advises that people with Down syndrome have regular check-ups from the age of 30 to look for signs of dementia. Advice on health conditions associated with Down syndrome, including Alzheimer’s disease and dementia, can be found on the NHS website. NICE guideline [NG54] Mental health problems in people with learning disabilities: prevention, assessment and management also advises that a special focus on dementia is required for people with Down syndrome. It is also important to ensure that physical illnesses do not go undiagnosed due to diagnostic overshadowing.

The NICE guidelines recommend that:

during annual health checks, as appropriate, clinicians ask the person with Down syndrome and their family members, carers or care workers (as appropriate) about family history and any changes that might suggest the need for an assessment of dementia, such as:
- any change in the person’s behaviour
- any loss of skills (including self-care)
- a need for more prompting in the past few months
clinicians consider supplementing an assessment of dementia for an adult with a learning disability with measures of symptoms, such as the:
- Dementia Scale for Down Syndrome (DSDS)
- Dementia Questionnaire for People with Learning Disabilities (DLD)
- Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID)
GPs, or others caring for adults with Down syndrome, should complete a baseline assessment of ‘adaptive behaviour’ (the person’s daily living skills)

The genetic and physiological differences of people with Down syndrome also have some impact on the effectiveness of treatment for dementia. NICE guidelines recommend a tailored, evidence-based approach to medication that considers the individual circumstances and factors such as patient preferences and specific health needs.

Palliative and end-of-life care

Commissioners and providers of health and social care should make sure that people with Down syndrome have equal access to high-quality, personalised palliative and end-of-life care. NICE guideline [NG96] Care and support for people growing older with learning disabilities includes a section on end-of-life care.

The life expectancy of people with Down syndrome has significantly improved in the past few decades. The average life expectancy of a person with Down syndrome is now around 60 years (see reference 4) and has increased substantially in recent years - as recently as 1983, a person with Down syndrome lived to be only 25 years old on average (see reference 13).

As is the case for anyone with palliative or end-of-life care needs, people with Down syndrome will have a range of needs that they may need support with - ranging from health needs such as symptom management through to emotional and spiritual needs. People with Down syndrome may also face additional or particular challenges. This may include:

being less able to understand information about their treatment options
being less able to communicate their concerns, wishes or preferences
experiencing more complicated physical or mental health problems
having more difficulty accessing services

A range of other bodies have also published guidance on end-of-life and palliative care. NHS England, for example, issued guidance on Delivering high quality end of life care for people who have a learning disability, which provides resources and guidance for commissioners, providers, and health and social care staff. ICBs and NHS bodies should consider this guidance when planning end of life care services.

The NHS is clear that it is unacceptable that people have a do not attempt cardiopulmonary resuscitation (DNACPR) decision on their record simply because they have a learning disability. This is set out in NHS England’s published letter on DNACPR and people with a learning disability and or autism. The terms ‘Down syndrome’ and ‘learning disability’ should never be:

a reason for DNACPR decision making
used to describe the underlying, or only, cause of death

A learning disability itself is not a fatal condition: death may occur as a consequence of co-occurring physical disorders and serious health events.

Every person has individual needs and preferences that must be taken account of, and everyone should always receive a good standard and quality of care. Discussions regarding cardiopulmonary resuscitation preferences should take place as part of a wider conversation regarding a person’s preferences, wishes and needs related to their future care. Reasonable adjustments in accordance with a person’s individual needs should be provided to allow people to have that conversation.

Question 7

3. Independence through social care

Accepted Answer

This section sets out DHSC’s vision for supporting the independence and wellbeing of people with Down syndrome. It explores:

the types of support and care that people may need
how those needs should be identified and assessed
how adult social care can provide tailored, person-centred support

The section also:

outlines the relevant legal duties that underpin this support
considers the vital role of unpaid carers and how they can be best supported
highlights - by emphasising the importance of co-operation, partnership and service integration - how co-ordinated working across health, care, housing and other sectors can help ensure people with Down syndrome receive the right support to enable independence

This section and its advice would be relevant for a range of organisations and professionals involved in planning, commissioning, delivering or supporting adult social care for people with Down syndrome. These include:

local authorities (such as county and district councils) including:
- adult social care teams
- commissioners
- learning disability services
- housing teams (particularly those responsible for strategic housing planning, delivering housing adaptations, and social housing allocations and delivery)
partners in ICSs who are responsible for planning and co-ordinating health and social care support
NHS services - particularly:
- community learning disability teams
- primary care
- mental health services
- allied health professionals (for example, occupational therapy and SLT)
care providers - including:
- supported living services
- residential care homes
- day services
- personal assistants
- domiciliary care providers
VCSE organisations - in particular, those focused on:
- learning disabilities
- family support
- advocacy
- rights-based support
carers’ organisations that support family and unpaid carers of adults with Down syndrome

This section is also relevant for:

education and employment services that support transitions into adulthood, lifelong learning and supported employment
housing providers that develop and manage accessible and inclusive housing options
regulators and inspectors - such as CQC and Ofsted - for quality assurance and oversight
legal professionals and advisers involved in mental capacity, safeguarding and social care law
people with Down syndrome, their families and carers, and the wider public to understand what they should expect from adult social care and related services

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation, which is considered a ‘relevant function’ under the DS Act, as well as wider legislation that is relevant to support for people with Down syndrome:

We want every person with Down syndrome to have their care and support needs met so that they can live a good life as independently as possible. We want them to be able to maximise their wellbeing by:

enjoying a healthy lifestyle
having access to strong relationships
participating in community life, including education training and employment
exercising their own choice and control

Social care and support may cover a wide range of activities, from providing personal care to people in their own homes through to bespoke accommodation for people with multiple needs.

People with Down syndrome should be able to participate fully in society, including:

going out in their communities
enjoying social activities
working
having friends and relationships
having a home of their own

Just like anyone else, people with Down syndrome also need to do domestic and administrative tasks such as cleaning, taking medication and financial management.

However, often people with Down syndrome and their families are not aware of the social care and support available to them. It is important that clear, accessible information is provided about the support available, including respite for parents and carers. We want to ensure that the needs of people with Down syndrome are understood so that effective support can be provided to enable them to participate fully in activities inside and outside of their home.

For both children and adults with Down syndrome, it is important that social care assessments and care planning take a person-centred approach that prioritises:

the wishes, feelings and views of the person with Down syndrome
continuity of care
long-term planning

In particular, the transition between children’s and adult’s social care is a critical time for people with Down syndrome and their families. The transition period needs to be planned and managed as far in advance as is appropriate to ensure that:

young people are equipped with the skills that will enable them to live independent and fulfilling lives
there is not a sudden gap in meeting the young person’s needs or those of their carers

As highlighted earlier in this guidance, the progress made in health and care support for people with Down syndrome means that life expectancy has improved significantly (reference 4). The current generation of people with Down syndrome could be the first who may expect to outlive their parents. As a result, there is an increasing need for social care services and local authorities to monitor how the needs of people with Down syndrome are changing as they age, and provide the appropriate support to help them live long, fulfilling lives.

It is important to take account of the particular social care needs that people with Down syndrome are likely to need support with.

People with Down syndrome are likely to need help with:

various aspects of domestic management, such as assistance with cleaning, food preparation, laundry, shopping and maintaining property
different aspects of personal care, such as maintaining personal hygiene, healthy eating and choosing appropriate clothing
planning and taking part in health, leisure and social activities, such as participating in the local community and attending exercise classes
different aspects of managing their individual healthcare needs, such as support with taking medication and arranging medical appointments, as well as mobility support
day-to-day administrative tasks, such as daily planning and time management, as well as help with financial management support, such as paying bills, filling out forms and budgeting
staying safe from potential exploitation, harm, abuse or neglect, which may include:
- guidance on road safety and online safety
- information on when and how to raise concerns with partners, including safeguarding concerns, or ask for help
making sure the right services and systems are in place to provide ongoing support for the person and their family or carers, such as health supervision and early education interventions
preparing for the transition between children’s and adults’ services, as well as plans for further education and employment
age-related challenges, including health issues, and concerns about where people will live and who will be responsible for their care
travel arrangements - for example, to attend college, appointments or their workplace, which may include full travel support or training to support them to become independent
arranging respite care or short breaks, which can provide people with Down syndrome with the opportunity to try different experiences, as well as provide support for their parents and carers
accessing information on, and attending, additional or specialist care services, which may include specialist dementia care and local Down syndrome-specific activities and support groups (see reference 14)

Local authorities have a range of duties to identify and meet the care and support needs of people with Down syndrome under existing legislation, including the Children Act 1989 and the Care Act. For the purposes of this guidance, we refer to these duties in the context of people with Down syndrome, but it should be noted that these duties are not limited to those with Down syndrome.

Children with Down syndrome

Local authorities must take reasonable steps to provide services designed to give children with Down syndrome the opportunity to lead lives that are as normal as possible.

The definition of ‘children in need’ (set out in section 17 of the Children Act 1989) includes all children who are disabled. This includes children with Down syndrome. Under the Children Act 1989, local authorities are under a general duty to safeguard and promote the welfare of children in need in the local authority area by providing a range and level of services appropriate to those children’s needs. Following an assessment, if services are necessary, a Child in Need (CiN) plan should be put in place for the child.

It is important that the care, support and housing needs of children with Down syndrome are appropriately identified and met. Each child will have their own unique set of needs, and it is important that local authorities take a person-centred approach.

Local safeguarding partners should publish their criteria for CiN assessments and services. Parents, other family members, practitioners and community partners (or anybody else who has concerns about a child’s welfare) can make a referral to the local authority’s children’s social care service for assessment of needs.

When determining what, if any, services to provide, local authorities, so far as is reasonably practicable and consistent with the child’s welfare, must:

ascertain the child’s wishes and feelings about the provision of services
give due consideration (having regard to a child’s age and understanding) to such wishes

Assessments are based on individual needs and must have regard to the:

wellbeing of the parent or carer
need to safeguard and promote the welfare of the disabled child and any other child for whom the parent or carer has parental responsibility

The Children and Families Act requires a local authority’s health service partners to co-operate with the authority in carrying out its duties towards children and young people. This includes ensuring the integration of educational and training provision with health and social care provision under section 25 of the Children and Families Act.

To carry out the social care CiN assessment, a qualified practice supervisor or manager should decide, with partners (where appropriate):

who the most appropriate lead practitioner will be
with the lead practitioner’s agreement, how to allocate them in line with the published local protocol

The lead practitioner role can be held by a range of people, including social workers. When allocating the lead practitioner, local authorities and their partners should consider the needs of the child and their family to ensure the lead practitioner has the time required to undertake the role. The lead practitioner should have the skills, knowledge, competence and experience to work effectively with the child and their family.

Every CiN assessment must be informed by the views of the child as well as the family, including the child’s wishes and feelings regarding the provision of services to be delivered. It must include:

an assessment of the outcomes that the child wishes to achieve in day-to-day life - for example, good health, independent living, relationships with friends, social inclusion in their community, further education or paid employment
whether the provision of care and support could contribute to the achievement of those outcomes

Looked-after children and care leavers

For looked-after children with Down syndrome (including those in foster or residential care) and care leavers, practitioners should also have full regard to the following pieces of statutory guidance:

It is important that the support needs of children in care or care leavers with Down syndrome are identified and met harmoniously across their care pathway and/or any other support plan, such as an EHC plan.

On 20 March 2025, the government announced the launch of the national Families First Partnership Programme, including the publication of the Families First Partnership Programme guide. The guide has been produced to support safeguarding partnerships across England to:

implement Family Help and multi-agency child protection reforms
make greater use of Family Group Decision Making

The programme is backed by over £500 million of investment in financial year 2025 to 2026, made available through the Final local government finance settlement: England, 2025 to 2026. This doubles direct investment into preventative support, which, over time, we expect to safely reduce the number of looked-after children, keeping more families together. At the Spending Review 2025, it was confirmed that the government will continue to invest £523 million each year in the Families First Partnership programme, up to 2028 to 2029. This will rise by at least another £300 million across the next 2 years.

Under schedule 2 of the Children Act 1989, local authorities must:

take reasonable steps to provide services designed to minimise the effect of the child’s disabilities
give disabled children the opportunity to lead lives that are as normal as possible
assist people who provide care for those children by giving them breaks from caring

Under section 17ZD of the Children Act 1989, local authorities must assess and support the needs of parents or carers who provide or intend to provide care for children with Down syndrome.

Under section 17 of the Children Act 1989, local authorities should:

combine EHC needs assessments with social care assessments where appropriate. EHC plan reviews should be synchronised with social care CiN plan reviews
effectively join up specific local early help and universal services to ensure families can seamlessly transition from universal to more specialist support, should a specific need be identified
align their CiN service offering to ensure there is an explicit link to the local area’s offer of short breaks for disabled children

Transition from children’s to adults’ services and preparation for adulthood

A transition assessment must be conducted for all young people with Down syndrome where it appears to a local authority that they are likely to have needs for care and support after they reach the age of 18. Transition assessments should take place at the right time for the young person or carer. Children and young people with Down syndrome are likely to need support with the transition to adult social care services and preparing for adulthood.

Preparing for adulthood means preparing for:

independent living - this means young people having choice, control and freedom over:
- their lives
- the support they have
- their accommodation and living arrangements, including supported living options and, where appropriate, options to live in an ‘ordinary house on an ordinary street’
participation in society, including:
- having friends and supportive relationships
- participating in and contributing to the local community
- being as healthy as possible in adult life
higher education and/or employment - this includes exploring different employment options, such as support for becoming self-employed and help from supported employment agencies

Effective person-centred transition planning is important to help young people with Down syndrome and their families prepare for adulthood. Transition assessments can help people with Down syndrome or their carers to plan ahead. Transition assessments should provide advice and information about:

what can be done to meet or reduce the person’s needs
what they can do to stay well and prevent, or delay, the development of needs

For young people with an EHC plan, the transition assessment should be carried out as part of the annual statutory EHC plan review, and there must be a focus from at least year 9 onwards on preparing the young person for adulthood. This focus must continue until the young person’s EHC plan ceases.

Planning for the transition to adulthood should result in clear outcomes being agreed that are:

ambitious and stretching
tailored to the needs and interests of the young person

Every young person with Down syndrome and their family is different so the transition assessment should take place as early as possible when it is most appropriate for them.

Most young people with Down syndrome who receive transition assessments will be children in need under the Children Act 1989 and will already be known to local authorities. However, local authorities should consider how they can identify young people who are not receiving children’s services who are likely to have care and support needs as an adult.

Often, staff working in children’s services will have built relationships and knowledge about the young person or carer in question over a number of years. Transition planning should take a joined-up approach involving all professionals who provide care and support (which may include health, education, social care and speech and language specialists).

As young people and their carers prepare for adulthood, children’s and adults’ services should work together to pass on this knowledge and build new relationships in advance of the transition period. Continuity is important throughout the transition period to ensure that young people do not find themselves without care and support, and local authorities must continue to provide a young person with children’s services during the transition process.

Many people value having one designated person who:

co-ordinates assessments and transition planning across different agencies
helps them to navigate through numerous systems and processes that can sometimes be complicated

Sometimes there is a natural lead professional involved in a young person’s care who fulfils this role, and local authorities should consider formalising this by designating a named person to co-ordinate transition assessment and planning across different agencies. Local authorities may also wish to consider specialist posts in their workforce to carry out this co-ordination function for people who are preparing for adulthood and interacting with multiple agencies.

Under the Care Act, local authorities must carry out a needs assessment (also known as a transition assessment) where:

it appears that those under 18 are likely to have care and support needs after turning 18
the local authority is satisfied that the assessment would be of significant benefit to the child

One of the following consent conditions must also be met:

the child has capacity or is competent to consent and does so, or does not but the local authority is satisfied that the assessment will be in the child’s best interests
the child refuses the assessment but is at risk of or experiencing abuse or neglect

Under the Care Act, local authorities should consider how they can identify young people who are not receiving children’s care services but who are likely to have care and support needs as an adult. Local authorities should ensure transition assessments take place at the right time for the young person or carer, and at a point when the local authority can be reasonably confident about what the young person’s or carer’s needs for care or support will look like after the young person in question turns 18.

Under the Children and Families Act, local authorities must ensure preparation for adulthood begins from year 9 (typically ages 13 to 14) for young people with an EHC plan. Local authorities should:

ensure transition assessments are undertaken as part of one of the annual statutory reviews of the EHC plan
ensure transition assessments inform a plan for the transition from children’s to adults’ care and support
for care leavers, consider using that statutory pathway planning process as the opportunity to carry out a transition assessment, where appropriate

The SEND code of practice: 0 to 25 years (particularly paragraphs 8.57 to 8.78) is relevant to transition planning.

Adults with Down syndrome

Where it appears that an adult with Down syndrome might have a need for care and support, local authorities must carry out a needs assessment (under section 9 of the Care Act) to determine whether they are eligible for care and support from the local authority. A needs assessment must be carried out regardless of the person’s finances or whether the local authority thinks their needs would meet the eligibility criteria.

The assessment may be triggered either when a person with Down syndrome requests it or if the local authority believes social care services may be necessary.

It is important that the care and support needs of adults with Down syndrome are appropriately identified and that any eligible needs are met. This will involve understanding the person’s needs for care and support, which can vary significantly between people with Down syndrome, and determining how best to meet them. This should include consideration of factors such as:

physical, mental and emotional wellbeing
daily living activities
the outcomes people want to achieve, including development of relationships, social inclusion, paid employment, and their housing needs and preferences

This will help ensure that the assessment is carried out in an appropriate and proportionate manner.

Local authorities must involve adults with Down syndrome and their carers when taking forward a needs assessment and care and support planning.

Under the Care and Support (Assessment) Regulations 2014, local authorities must:

under regulation 3, provide information about the assessment process to the person being assessed
under regulation 5, ensure that the person carrying out a needs assessment:
- has the skills, knowledge and competence to carry out the assessment
- is appropriately trained
under regulation 2, where an adult with Down syndrome wishes (and has capacity to take part), support them to carry out a self-assessment of their care and support needs. The care and support statutory guidance sets out the considerations that local authorities should give regard to when considering self-assessment

Carers of adults with Down syndrome

Section 10 of the Care Act defines a ‘carer’ as an adult who provides or intends to provide care for another adult (an ‘adult needing care’) - however, see subsections (9) and (10) for further considerations.

Under this section of the act, where a local authority identifies a potential current or future need for support for a person who provides (or intends to provide) care for an adult with Down syndrome, they must carry out a carer’s assessment.

The local authority must:

assess whether the carer does need support (or is likely to do so in the future) and, if so, what those needs are (or are likely to be in the future)
carry out that assessment irrespective of their view of the level of:
- the carer’s support needs
- the carer’s financial resources or those of the adult needing care

A carer’s assessment must include an assessment of:

whether the carer is able (and is likely to continue to be able) to provide care for the adult needing care
whether the carer is willing (and is likely to continue to be willing) to do so
the impact of the carer’s support needs on their wellbeing (as set out in section 1 (2) of the Care Act)
the outcomes that the carer wishes to achieve in day-to-day life
whether (and, if so, to what extent) the provision of support could contribute to the achievement of those outcomes

If a carer of an adult with Down syndrome is then assessed as having needs that are eligible for support, the local authority is required to meet those needs and draw up a support plan, with the carer, setting out how those needs will be met.

Further information on carers can be found in ‘Factsheet 8: the law for carers’ of the Care Act 2014: Part 1 factsheets.

Young carers of adults with Down syndrome

If a local authority considers that a young carer of an adult with Down syndrome may have support needs, it must carry out an assessment under section 17ZA of the Children Act 1989 to establish how best they can support the young carer and their family. The local authority must also carry out such an assessment if a young carer, or the parent of a young carer, requests one.

The authority must consider whether it is appropriate or excessive for the young carer to provide care for the person in question, taking into consideration the young carer’s needs and wishes.

The Young Carers (Needs Assessment) Regulations 2015 require local authorities to look at the needs of the whole family when carrying out a young carer’s needs assessment, including whether to combine a young carer’s needs assessment with any other assessment.

Data on young carers has been collected in the school census since 2022 to 2023, ensuring they receive tailored support and do not miss out on vital educational opportunities.

Statutory guidance on Keeping children safe in education requires designated safeguarding leads in schools to undergo training to provide them with the knowledge and skills to carry out their role. This includes having a good understanding of, and alertness to, the needs of young carers.

Adult carers with Down syndrome

Adults with Down syndrome who become carers for elderly parents or other adults may also be entitled to a carer’s assessment under section 10 of the Care Act.

Local authorities must offer a carer’s assessment to adults with Down syndrome who have caring responsibilities if they appear to need support now or in the future.

Provision of information and advice on care and support

Under section 4 of the Care Act, local authorities must establish and maintain a service to provide information and advice on the social care and support available to adults and their carers. That service should include specific advice and information for adults with Down syndrome and their carers.

Local authorities must ensure that they provide information and advice on:

the social care system in the local area and how it operates
the choice of types of care and support available (including choice of available providers)
how to access available care and support
how to access relevant independent financial advice
how to raise concerns about the safety or wellbeing of an adult who has care and support needs

For example, this may include information on home care, residential care, respite care and equipment for daily living, along with guidance on assessments, funding and community support options. This information could be made accessible through local authority websites, printed leaflets, helplines, community events, and outreach partnerships with charities and local organisations.

Under section 4 (4) of the Care Act, local authorities must provide information and advice that is accessible and proportionate to the needs of people with Down syndrome. Local authorities must have regard to the AIS as set out in section ‘1. Accessible and person-centred services’ above.

Preventative care and support for adults with Down syndrome

Many people with Down syndrome will need care and support to enable them to live full lives. Under the Care Act, local authorities must provide (or arrange the provision of) services, facilities, resources or other measures, in their area, that will help to prevent, delay or reduce the support needs of adults with Down syndrome and their carers.

Under the act, local authorities should also ensure they are considering the needs of their local adult population, including those who do not meet the eligibility threshold for social care assessment, support and care.

Encouraging people with Down syndrome to be more proactive about their health and wellbeing can help:

increase independence
reduce or delay the need for services to be provided

This benefits them, their loved ones and service providers.

Local authorities should consult with adults with Down syndrome and their carers to ensure support is effective. Local authorities must involve:

the adult and carer, and any person the adult asks the local authority to involve
if the adult lacks capacity, anyone that appears to the local authority to be interested in the adult’s welfare

This will help determine what preventative services are needed, and enable co-production of plans for preventative support with both people with Down syndrome and local community providers. For example, local authorities could promote healthy and active lifestyles or provide interventions such as assistive care technologies, digital tools, and employment and skills development programmes.

Local authorities are also responsible for delivering home adaptations and supporting people to live in a home that is designed to meet their needs, including any:

sensory and physical mobility needs
wider needs in terms of access to loved ones, local amenities and public transport

See section ‘6. Appropriate housing’ below for further information on home adaptations.

Local authorities should also consider ways to help carers remain healthy to prevent them from developing their own support needs. This may include helping carers to:

look after their own physical and mental health and wellbeing
make choices about their own lives
care safely and effectively for the adult they look after with Down syndrome

Care and support plans, and personal budgets

As outlined in ‘Social care needs of people with Down syndrome’ at the start of this section, people with Down syndrome may have a variety of care and support needs that can be met in a range of ways. Person-centred conversations are vital to ensuring that people with Down syndrome can access the right support.

Where a local authority is required under section 18 of the Care Act to meet the needs of a person with Down syndrome or decides to do so under section 19 of the act, they must prepare a care and support plan. A care and support plan sets out the person’s care and support needs and how those needs will be met.

This plan must include a personal budget, which is a statement that specifies:

the cost to the local authority of meeting the needs it is required or decides to meet
the amount which, on the basis of a financial assessment, the person must pay towards those costs
where the local authority must pay towards costs, the amount it must pay

If the local authority decides to charge a person for their care after undertaking a needs assessment, they must follow the Care Act, Care and Support (Charging and Assessment of Resources) Regulations 2014 and the care and support statutory guidance to conduct a financial assessment, which will determine what the person can afford to pay towards their care.

Whether or not a person qualifies for any financial support from the local authority towards their care costs depends on:

their capital assets
whether or not they are a long-term care home resident

Any long-term resident who has assets above the upper capital limit (£23,250) is expected to meet the full cost of their care and is referred to as a ‘self-funder’.

Those receiving care at home with assets above the capital limit (£23,250) may not have to meet all of the costs of care themselves and, if they own their own home, the value of that home will not be included in calculating the amount of capital assets they have.

Anyone who has assets below the lower capital limit (£14,250) pays what they are assessed as being able to afford from their income only.

Anyone between the above 2 limits pays what they can afford from income plus a contribution from their assets.

Where the local authority pays towards a person’s care costs, one method by which a person can receive their personal budget is through a ‘direct payment’. Direct payments are an important mechanism in the provision and personalisation of care. They provide people with independence, choice and control by enabling them to commission their own care and support to meet their eligible needs.

Along with personal budgets and personalised care planning, direct payments provide the platform with which to deliver a modern care and support system. People should be empowered to take ownership of their care planning and choose how their needs are met, whether through local authority or third-party provision, direct payments or a combination of the 3 approaches.

As set out in the care and support statutory guidance, local authorities should not place unreasonable restriction on the use of a direct payment, as long as it is being used to meet eligible care and support needs.

Individual service funds (ISFs) are another option in addition to direct payments. An ISF is an arrangement where the budget for a person’s care and support is transferred directly from a local authority to a support provider of the person’s choice. This enables the person to be in control of how their support is designed and delivered.

Specialised services and mainstream services

Local health and care partners should consider whether the needs of people with Down syndrome may or may not be met by specialised services.

For example, the majority of care for dementia is commissioned for older adults, but people with Down syndrome may require specialist dementia care at a much younger age.

Mainstream dementia services may be unsuitable for people with Down syndrome. Diagnosing dementia in people with a learning disability requires a very different approach and takes longer to complete.

Partners could consider how appropriate their local dementia offer is for this cohort of people, or whether existing support available for people with a learning disability could meet the dementia-related needs of people with Down syndrome. Community learning disabilities teams are more familiar with communication challenges in this population and are therefore better placed in many instances to meet the needs of people with Down syndrome.

Older adults with Down syndrome

Local health and social care commissioners should consider a number of specific factors relating to Down syndrome when planning older adult care provision in their area.

Increases in life expectancy have led to an increasing demand for care for older adults with Down syndrome. This may include an increasing number of people presenting with a new need for support later in life who may not have required as much support, if any, from social care services when they were younger. For example, age-related care problems could include:

who will be responsible for a person with Down syndrome’s care, if they had previously been cared for by a family member
future housing needs should their current home become unsuitable for them as they grow older

Local commissioners may need to consider this potential for extra demand later in life as part of their planning and commissioning of services.

Local health and care partners should consider whether the needs of people with Down syndrome may or may not be met by mainstream provision and, if not by mainstream provision, how they will be met.

Co-operation, partnership and integration of services

Section 82 of the National Health Service Act 2006 places a duty on NHS bodies and local authorities to co-operate with each other to secure and advance the health and welfare of people in England.

People with Down syndrome are likely to need support across a range of services. It is therefore important that local authorities work together with other partners and consider the wider needs of people with Down syndrome when planning and providing support.

For example, local authorities should consider the interaction of social care with local housing or employment strategies and plans, and how those will support people. This may include providing adaptations to housing or considering employment as part of care needs assessments. This is discussed in more detail in sections ‘5. Meaningful employment’ and ‘6. Appropriate housing’ below.

Under the Local Government and Public Involvement in Health Act 2007 (sections 116ZA and 116ZB), ICBs and local authorities with responsibility for social care must establish a joint committee - an ICP - and develop an integrated care strategy addressing how health and care needs could be met more effectively through arrangements between NHS bodies and local authorities.

Section 6 of the Care Act places a specific duty on local authorities to co-operate with relevant partners, and relevant partners to co-operate with local authorities, in the exercise of their respective functions relating to adults with support needs and their carers. A full definition of ‘relevant partners’ can be found under section 6 (7) of the Care Act.

Local authority departments responsible for care and support functions must also co-operate with other local authority departments - for example, those responsible for housing, children’s services and public health. This should apply to both the planning and delivery of services.

Under section 3 of the Care Act, local authorities must ensure the integration of adult social care provision with health services, and other services that may have an effect on health (such as housing accommodation or employment opportunities), where they consider this would:

promote wellbeing
improve the quality of care and support
help prevent or delay the development of care needs

Under section 46A of the Health and Social Care Act 2008, CQC must review and assess local authorities’ exercise of specified ‘regulated care functions’ under part I of the Care Act.

Under the JSNAs and joint local health and wellbeing strategies (JLHWSs) statutory guidance (updated 2022), local authorities should bring partners together - for example, through HWBs - to:

promote integration between services
ensure information-sharing protocols are in place
make sure that all necessary information for service planning is publicly available

JSNAs and JLHWSs must be published, as stated in the guidance, and should:

reflect the views, wishes, feelings and beliefs of people with a learning disability and their families and carers, using a variety of methods
include a summary of community views, how they have been used and whether any other views have been considered

Question 8

4. Effective education and preparation for adulthood

Accepted Answer

This section describes the SEND system through which education settings, local authorities and others provide children and young people with support to enable them to succeed in education or training.

Children and young people with Down syndrome will often receive support through an EHC plan setting out their specific needs and the provision required to meet those needs. All children and young people with Down syndrome will also meet the definition of having a disability under the Equality Act.

Local authorities, schools and further education institutions have a duty to make reasonable adjustments accordingly.

This section is for:

relevant schools and early years settings
further education institutions
relevant health bodies
local authorities
youth offending teams and relevant youth custodial establishments
children and young people with Down syndrome, their families and carers, and the wider public to see what education services and support are available to them
VCSE organisations and services supporting children, young people and their families with Down syndrome

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from support equivalent to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation, which is considered a ‘relevant function’ under the DS Act, as well as wider legislation that is relevant to support for people with Down syndrome:

Our aspirations for children and young people with Down syndrome

Every child and young person with Down syndrome has the right to access a high-quality education that prepares them effectively for adulthood, with the same learning opportunities as their peers.

It is important that children and young people with Down syndrome are supported and empowered to explore their interests and reach their goals. This includes:

encouraging the aspirations of people with Down syndrome and those who support them
ensuring schools and early years settings have high but achievable expectations with equal access to opportunities, such as further education and employment

We know that, to achieve this, there needs to be an awareness and understanding of the specific developmental and learning needs of people with Down syndrome. These needs can vary from person to person, but most children and young people with Down syndrome will typically have some level of learning disability (see reference 15) that requires special educational support, typically an EHC plan. Down syndrome is also associated with an increased incidence of autism.

The following section sets out further information on the needs of children and young people with Down syndrome.

We want professionals working in the education system to recognise the typical learning profile of children and young people with Down syndrome, so that they can support them to achieve the best possible educational outcomes.

This does not mean every child or young person with Down syndrome should receive the same support, but professionals must use their best endeavours (try their best) to ensure they receive the support they need. This is crucial across all education settings.

Educational and developmental needs of people with Down syndrome

It is important to consider the specific developmental profile of strengths and challenges (known as the behavioural phenotype) associated with Down syndrome to understand the educational needs of children and young people with Down syndrome.

Overall, development can vary widely between people with Down syndrome. While most children and young people with Down syndrome have a mild or moderate intellectual disability, others have more significant and complex needs.

The specific developmental and educational needs of children and people with Down syndrome are very likely to include:

impaired cognitive development - this can stem from:
- difficulties in developing automatic processing
- impaired executive function
- difficulties with memory consolidation
difficulties with sensory processing, such as:
- hypersensitivity to noise and touch
- seeking out sensory stimulation
- engaging in repetitive behaviours (see reference 16)
weak short-term auditory working memory, including:
- potential difficulties in storing and processing verbal information (such as instructions)
- challenges in retaining and consolidating learning into long-term memory
delays and challenges in speech and developing, using and processing spoken language. This can include:
- difficulties with stammers and unclear speech fluency, often due to anatomical differences in the oral cavity
- reduced muscle tone
- motor planning difficulties
- limited receptive and expressive vocabulary, and difficulties with grammar and sentence structure, which can lead to their knowledge being underestimated
delays in development of fine and gross motor skills, including sitting, walking or running, and writing, drawing and object manipulation. This can affect self-help skills and participation in physical activities
a facility for social development and social learning, which can be considered a relative strength compared with, for example, their language skills. Children and adults have strengths in social and emotional understanding, and many develop age-appropriate behaviour
challenges with behaviour, which can be an issue for some but not all children. This can impact social and academic development unless properly supported

This means that, to participate in a full education, people with Down syndrome are very likely to need help as follows:

support with visual learning - although visual learning is considered a strength for many children with Down syndrome, they may also experience visual impairments that can impact their learning. For example, they may struggle with visual focus and reading small fonts
support with literacy - as with visual learning, literacy ability may be a relative strength for people with Down syndrome but can be impacted by visual impairments
support with numeracy - numeracy skills are recognised as a relative weakness for some children and adolescents with Down syndrome. This may be due to challenges with short-term memory and expressive language
understanding the impact of hearing loss on education - hearing loss can cause difficulties for children and young people with Down syndrome, including with:
- listening to whole-class input
- listening in noisy environments
- processing spoken language
- discriminating speech sounds
- learning phonics
access to an inclusive learning environment - some research suggests that children with Down syndrome develop better spoken language and achieve more academic progress when taught in fully inclusive spaces. However, this is provided that teachers have effective training in inclusive practices and the specific learning and developmental needs of children with Down syndrome
access to further education and/or employment opportunities - employment could be an expected outcome for many people with Down syndrome and is an important consideration for schools and colleges
support with specific health issues that affect learning and development - health issues can include pain, sleep difficulties and thyroid deficiency
support with additional difficulties as a result of co-occurring diagnoses - this may include autism and ADHD, which may impact academic performance unless properly supported

Education: wider benefits for people with similar needs

There are many people in England who have chromosomal conditions other than Down syndrome, a genetic condition and/or a learning disability. These conditions usually give rise to needs that may overlap with those of people with Down syndrome. Conditions that may give rise to similar developmental and educational needs to people with Down syndrome include, but are not limited to, Williams syndrome and Fragile X syndrome.

People with other conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

Consistent with the social model of disability, the SEND system does not focus on whether a child or young person has a particular condition or diagnosis. Rather, the question is how their SEN or disability is affecting their access to learning in an education setting.

For example, children with Williams syndrome may have special educational needs that require an EHC plan and provision to be put in place, such as support with handwriting, reading and numeracy, which have been reported as a challenge for this group as well as for people with Down syndrome.

Therefore, relevant authorities may want to use this guidance to support them in exercising their functions in respect of meeting the needs of this wider population of people and reducing health inequalities they may face.

Supporting children and young people with Down syndrome to participate in education

The government has committed to making reforms to strengthen the SEND system. The text that follows relates to the current system and it will need to be updated following any changes.

There are a number of existing statutory duties under part 3 of the Children and Families Act that require local authorities and educational establishments to support children and young people with Down syndrome to have access to and participate in a full, meaningful and inclusive education.

Identification of SEND in children and young people with Down syndrome

It is important that children and young people with Down syndrome are provided with the special educational support they need from an early age. Education settings have duties to provide support to children and young people with SEND, underpinned by arrangements for the identification of what those needs are.

Under part 3 (22) of the Children and Families Act, local authorities have a duty to identify children and young people who have (or may have) SEN or disabilities in their area, including those with Down syndrome. This is a proactive duty, which means local authorities should put in place systems for gathering this information from educational institutions and other services.

Local authorities are responsible for all children and young people with Down syndrome in the authority’s area who have been identified by or brought to the attention of the authority as someone who has or may have SEND.

Under section 23 of the Children and Families Act, ICBs, NHS trusts and NHS foundation trusts must tell a child’s parent if they believe their child under compulsory school age has (or probably has) SEN or a disability and give them the chance to discuss this with an officer of the ICB or trust. The ICB, NHS trust or NHS foundation trust must then report this to the appropriate local authority.

Under schedule 2 of the Children Act 1989, local authorities must keep a register of disabled children in their area, including those with impaired hearing and vision.

The government added a question to the school census and the Individualised Learner Record from January 2025 to provide information on the number of students with Down syndrome in schools and further education respectively. This will help support implementation of the DS Act and facilitate better planning for local authorities.

Provision of local services for children and young people with Down syndrome

Local authorities have a number of duties under part 3 of the Children and Families Act to provide services to children and young people who have SEND in their area. This includes children and young people with Down syndrome.

Individualised and comprehensive support services that identify strengths and target SEN are crucial to ensuring that children and young people with Down syndrome are able to participate in education or training that meets their needs.

Section 30 of the Children and Families Act places a statutory duty on local authorities in England to publish information about the provision they expect to be available for children and young people with SEN or disabilities.

We want local provision to be effective in every area across England, with children and young people with Down syndrome able to access the services they need. Local authorities should work closely with parents and young people in the development of those services.

Integration and joint working between services operating in the education, health and care systems is essential to ensuring children and young people with Down syndrome receive tailored support.

Under section 30, local authorities must publish a SEND local offer, which sets out the information available to children and young people with SEND in their area on:

education, health and social care provision
other educational and training provision
provision to assist in preparing for adulthood and independent living
travel arrangements for travel to and from school and post-16 institutions, and other places in which early years education is provided

Mainstream education settings (defined below) have a duty under section 66 of the Children and Families Act to use their best endeavours to:

make sure that children and young people with Down syndrome who have SEN get the support they need within mainstream education settings
have regard to the SEND code of practice: 0 to 25 years when deciding what provision should be put in place

This duty is important for the small minority of children and young people with Down syndrome in a mainstream setting for whom an EHC plan is not currently being maintained.

This duty applies to the following mainstream education settings:

mainstream (not specialist) schools
maintained nursery schools
age 16 to 19 academies
alternative provision academies
institutions within the further education sector
pupil referral units

Under section 27 of the Children and Families Act, local authorities must consider the extent to which the educational, training and social care provision in their area meets the needs of children and young people with SEND and keep this under review. In doing so, they must consult children and young people with SEND (such as those with Down syndrome), their parents, schools, post-16 institutions, children’s centres and others.

This section 27 duty complements local authority duties under:

section 14 and section 15ZA of the Education Act 1996 (duty to secure sufficient schools and suitable education and training for children and young people)
section 116B of the Local Government and Public Involvement in Health Act 2007 (duty to have regard to assessment of relevant needs and JLHWSs)

Under section 26, the process of keeping education, training and social care provision under review should be integrated with the JSNA undertaken by the local HWB. HWBs must develop JSNAs and JLHWSs to support prevention, identification, assessment and early intervention, and a joined-up approach.

Ofsted and CQC carry out joint inspections of a local area’s - including the local authority’s - SEND services at the request of the Secretary of State for Education under section 20 (1) (a) of the Children Act 2004. Inspectors assess the extent to which the local area partners (including the local authority) are complying with relevant legal duties relating to arrangements for children and young people with SEND. Relevant legal duties may include those under the Children and Families Act, Equality Act and Human Rights Act.

The Area SEND: framework and handbook for inspecting local area arrangements for children and young people with SEND was devised jointly by Ofsted and CQC, and was launched in January 2023.

Under section 26 of the Children and Families Act, local authorities must put in place joint commissioning arrangements for the education, health and care provision to be secured for children and young people with SEND. This duty also applies to relevant healthcare commissioners. This may include:

arrangements for considering and agreeing the education, health and social care provision needed by children and young people with SEND
the information to be provided about this
how complaints about this are dealt with
procedures for resolving disputes between local authorities and partners as quickly as possible

Under section 28 of the Children and Families Act, local authorities must co-operate with each of their local partners. In turn, each local partner - including education settings and relevant healthcare commissioners - must co-operate with the local authority in the exercise of the authority’s functions under part 3 of the Children and Families Act.

Local authorities must have regard to the SEND code of practice: 0 to 25 years (in relation to the conduct of functions under part 3 of the Children and Families Act) when working with, or commissioning services for, children and young people with SEND. This also applies to NHS bodies and NHS foundation trusts.

Local authorities and their health services partners (for example, ICBs, schools, colleges and early years settings) must, under section 26 of the Children and Families Act, establish local protocols to:

make sure information is shared properly and safely, including rules about confidentiality, consent and data security
help with planning support and services for children and young people with SEND

ICBs should - as set out in the Executive lead roles on ICBs appendix to NHS England’s statutory Guidance on ICB constitutions and governance - appoint an ICB executive lead with responsibility for children and young people with SEND, and a lead for people with Down syndrome, to support the ICB to deliver its statutory SEND duties.

NHS England, ICBs and HWBs must, as set out in the Road to recovery: the government’s 2025 mandate to NHS England, National Health Service Act 2006 and Health and Social Care Act 2012, promote the integration of services.

Under section 75 of the National Health Service Act 2006, local authorities and NHS bodies can pool resources and delegate certain NHS and local authority health-related functions to other partners if it would lead to an improvement in the way those functions are exercised.

EHC needs assessments and plans

As outlined earlier in this section, children and young people with Down syndrome are very likely to have some degree of SEN. While, in some cases, the special educational support provided by education settings from delegated budgets may be adequate to meet these needs, most children and young people with Down syndrome will be eligible for an EHC plan.

The first step towards developing an EHC plan is an EHC needs assessment. This is a legal process carried out by the local authority that determines a child or young person’s SEN and the support needed to meet them.

A parent of a child with Down syndrome is entitled to request that a local authority conducts an EHC needs assessment. This request can also come from the young person themselves (if they are aged 16 to 25 years old) or a representative of a school or post-16 institution. In addition, anyone else (for example, an early years setting) can bring a child or young person with Down syndrome who has or may have SEN to the attention of the local authority, with a view to the local authority conducting a needs assessment.

Under section 36 of the Children and Families Act, when a request is made to a local authority or a local authority otherwise becomes responsible for a child or young person, the authority must determine whether it may be necessary for special educational provision to be made for the child or young person in accordance with an EHC plan, and if so, secure an EHC needs assessment.

An EHC plan should describe the:

child or young person’s special educational and relevant health and social care needs
provision required to meet those needs

When an authority is fulfilling its duty to assess a child or young person with Down syndrome for an EHC plan, local authorities must seek information and advice from the relevant professionals.

Provision must be detailed and specific, and should normally be quantified. For example, if a child with Down syndrome has language difficulties, the EHC plan should state:

the need for SLT
who is responsible for delivering the therapy
the frequency

When deciding what provision should be put in place, authorities may wish to refer to existing guidance on how to meet the educational needs of children and young people with Down syndrome.

An EHC plan can be maintained up to the age of 25, including where a young person with Down syndrome is:

in college
undertaking an apprenticeship
not in education, employment or training

A local authority may only cease to maintain an EHC plan if it determines that the plan is no longer necessary. For young people aged 18 or over, this includes considering whether the educational or training outcomes specified in the plan have been achieved.

Local authorities have a number of duties regarding EHC assessments and plans under part 3 of the Children and Families Act. Under section 36 (3), local authorities must consider carrying out an EHC needs assessment for a child or young person with Down syndrome upon request, or upon becoming responsible for the child. Under section 37, local authorities must prepare an EHC plan for a child or young person with Down syndrome where it is deemed necessary for the special educational provision to be made in accordance with an EHC plan.

Under sections 36 (7) and (8), local authorities must seek information and advice from a range of partners throughout the EHC needs assessment and plan process, including:

the child or young person and their parents
their early years setting, school or college (if any)
relevant health and social care partners
an educational psychologist
any other relevant professionals

Under section 42 (2), local authorities must ensure that children and young people with Down syndrome get the special education provision specified in their EHC plan, as well as ensure that any social care services identified are provided.

Under section 44 (1), local authorities must review the EHC plan every year, and before a transfer between phases of education, to check the support specified is still appropriate to meet the needs of the child or young person. Local authorities should consider reviewing an EHC plan for a child under the age of 5 at least every 3 to 6 months to ensure that the provision continues to be appropriate. Under section 44, local authorities must focus on progress towards achieving the outcomes in an EHC plan and review whether these remain appropriate.

Inclusion in the school relationships, sex and health education (RSHE) curriculum

Relationships, sex and health education (RSHE) - previously known as relationships and sex education (RSE) - is statutory in all schools, including special schools and residential special schools. It is important that all pupils are able to access the full RSHE curriculum.

Under the Relationships and sex education (RSE) and health education statutory guidance 2019, schools should ensure that their teaching is:

sensitive
age appropriate
developmentally appropriate
delivered in line with RSHE statutory guidance

When designing and teaching these subjects, schools should take account of factors of particular developmental importance for children with Down syndrome. This includes skills for independence and autonomy.

Schools should be aware that some pupils with Down syndrome may need support to help them stay safe from potential harm and exploitation. Relationships education can be particularly important subjects for these pupils, particularly those with social, emotional and mental health needs. Such factors should be taken into consideration in designing and teaching these subjects.

It is also important that RSHE includes a focus on skills for independence and autonomy to support pupils to grow into safe, confident and healthy members of their communities. We know that adults with learning disabilities die earlier than their non-disabled peers from preventable causes. It is important that health education supports pupils with Down syndrome to understand and manage their own physical and mental health.

Some pupils with Down syndrome are likely to need more repetition, and therefore more time. Some pupils may also be less likely to have opportunities to practise relationship skills outside of school life, so schools should identify social opportunities for pupils to practise these skills. Ensuring parents and carers are aware of what is being taught in the curriculum can be very beneficial to:

support consistent messaging between home and school
provide further opportunities for pupils with Down syndrome to develop appropriate skills

Post-16 further education

Being supported towards greater independence and employability can be life-transforming for children and young people with Down syndrome.

This support needs to start early and should centre around the child or young person’s own aspirations, interests and needs. All professionals working with them should share high aspirations and have a good understanding of what support is effective in enabling children and young people to achieve their ambitions.

All education, training and other related service providers have a duty to make reasonable adjustments for disabled people so they are not placed at a substantial disadvantage compared with non-disabled students. This includes people with a learning difficulty. This duty is set out under section 20 of the Equality Act.

Under the Equality Act, colleges must not discriminate against, harass or victimise disabled children or young people, and must make reasonable adjustments to prevent them being placed at a substantial disadvantage. This duty is anticipatory - it requires thought to be given in advance to what disabled young people might require and what adjustments might need to be made to prevent that disadvantage.

Where a student has a learning difficulty or disability that calls for special educational provision, the college must try its best to put appropriate support in place.

Colleges should:

keep the needs of students with SEND under regular review
involve the student and their parents (particularly for those aged 16 to 18) closely at all stages of the cycle, planning around the person
ensure that staff have the skills to do this effectively

Colleges should be ambitious for young people with SEND, whatever their needs and level of study. They should focus on supporting young people so they can progress and reach positive destinations in life, including:

higher education, further training or employment
independent living
good health
participation in the community

Further information and guidance on SEND in further education can be found in the SEND: guide for further education providers.

Higher education

To ensure inclusion for students with Down syndrome, universities in England should adopt a multifaceted approach grounded in human rights, inclusive teaching and tailored support.

Higher education providers (HEPs) have responsibilities under the Equality Act that state they must not discriminate against students with disabilities, including Down syndrome, in:

admissions
education delivery
access to services

The Equality Act also requires HEPs to make appropriate reasonable adjustments for all their students with learning difficulties and disabilities. Wherever possible, students with Down syndrome should expect to have their needs met through inclusive learning practices and individual reasonable adjustments made by their HEPs.

Disabled Students’ Allowance (DSA) is available for eligible students in addition to the reasonable adjustments made by HEPs for the provision of more specialist support. To be eligible for DSA, students must:

be eligible for higher education student finance
have a disability as defined in the Equality Act

Maximum DSA for undergraduate and postgraduate students is £26,948 in the 2024 to 2025 academic year. This has been increased from £26,291 in the 2023 to 2024 academic year. Travel costs remain uncapped.

The most recent final figures available show that, in 2021 to 2022, around 87,000 disabled students received a total of around £169 million in DSA support.

Support in the youth justice system

If a child or young person with Down syndrome enters the youth justice system, it is crucial that they have continued access to appropriate support for meeting their SEN. Working with children should be a dynamic process because circumstances, problems and positive events may affect the child’s circumstances and needs.

An intervention plan is required for all children supervised by the youth offending team (YOT) or youth justice service (YJS). The plan is produced by the child with their YOT or YJS worker. It:

translates the assessment of what the issues might be for a child into what needs to be done to tackle these
identifies all actions required to meet the child’s needs and any other actions that can support the child to lead a positive and safe lifestyle

All children should have a designated YOT or YJS worker who is responsible for:

engaging the child and building a positive relationship
ensuring assessments are undertaken, kept up to date and regularly reviewed
ensuring any specific requirements of the court are addressed in the order or, if adjustments need to be made, taking appropriate action
working with the child and their parents or carers to plan engagement and work to be undertaken
providing supervision through regular and agreed contact, and being accessible to the child (and their parents or carers)
managing transitions to adult or other services
reviewing the progress and managing closure of the order, while ensuring that the child has their needs and rights met plus any ongoing support required to maintain progress beyond the end of an intervention

The YOT or YJS worker is there to:

help the child to develop a positive self-identity
encourage desistance (prevention of re-offending) by assisting them to engage with people and agencies who can support them
undertake strengths-based work to help the child to develop a positive view of themselves and their place in society
build relationships with the child’s parents or carers

The YOT or YJS worker will act as an advocate and broker on behalf of the child and ensure that they are able to access the services and support they require to meet their rights and needs. This will also reduce the likelihood of offending.

Where (as will typically be the case) the child or young person who has been detained has an EHC plan, the local authority responsible will have an ongoing role in relation to the:

support provided in the secure estate (such as within a youth offending institution, secure training centre or secure children’s home)
preparation for transition back to the community on release

Similarly, if healthcare provision relating to the child or young person’s SEN is set out in the plan, the health commissioner will have an ongoing role.

Question 9

5. Meaningful employment

Accepted Answer

This section sets out the statutory duties in place for schools, local authorities and employers to support people with Down syndrome into lasting and meaningful employment. It:

considers the needs of people with Down syndrome to make effective education-to-employment transitions, including through accessible work placements
covers the practical support available from the Department for Work and Pensions (DWP) Jobcentre Plus offices, in the form of disability employment advisers and Additional Work Coach Support
sets out current provisions under the government’s Access to Work scheme, including Access to Work support for supported internships
outlines the resources available to employers to help them support employees with Down syndrome
includes details of Connect to Work - a new, major supported employment programme currently being rolled out by local authorities

This section is for:

local authorities
the governing bodies of schools, including non-maintained special schools
the governing bodies of further education colleges and sixth form colleges
the proprietors of academies (including free schools, university technical colleges and studio schools)
the management committees of pupil referral units
independent schools and independent specialist providers approved under section 41 of the Children and Families Act
care providers
employers of people with Down syndrome
people with Down syndrome, their families and carers, and the wider public to see what services and support are available in employment for people with Down syndrome
VCSE organisations and services supporting children, young people and their families with Down syndrome.

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation:

Our employment aspirations for people with Down syndrome

We want every person with Down syndrome who can and wants to work to have the right support and opportunity to do so.

People with Down syndrome can bring many skills and strengths to the workplace. There are many examples of people with Down syndrome who thrive in a range of different occupations, from kitchen staff, laboratory assistants, and construction and office workers through to TV presenters and actors.

Just like anyone else, people with Down syndrome want to enjoy the significant benefits of employment. Work can provide structure and promote positive self-esteem as well as providing income and social standing. It can help people with Down syndrome to live more independently and participate meaningfully in their community. Paid employment provides opportunities for independence and to develop and apply new skills. There is clear evidence that being in work is good for overall health and wellbeing (see reference 17).

However, we know that employment rates for people with a learning disability, which includes people with Down syndrome, are significantly lower than those of the general population. We heard during the call for evidence that people with Down syndrome often want to work but may face barriers to gain and stay in meaningful employment.

We want to see appropriate support across the life course from a range of services, all playing a role to encourage people with Down syndrome to enter, stay in and enjoy the world of work. This means:

fostering inclusive school and college environments that build confidence and skill sets
ensuring the provision of a broad range of accessible, high-quality work experience opportunities
promoting employment as a next step and attainable goal for many people with Down syndrome to achieve

Employment needs of people with Down syndrome

It is important to consider specific areas people with Down syndrome are likely to need help with in finding meaningful and lasting employment. This could include help:

considering what work is right for them, so they can find a job that they would be able to do and enjoy
understanding how they can bring their individual strengths, skills and interests to the workplace
accessing work programmes and placements to gain insights and experience and prepare for employment. This might include:
- supported internships
- apprenticeships
- other work-based training opportunities
accessing further education opportunities - for example, support to help them achieve qualifications that are needed for:
- specific courses or job opportunities
- residential experiences at local colleges
- work placements
writing CVs and preparing for interviews - for example, using role play

Employers should also consider reasonable adjustments to qualification requirements and recruitment processes to ensure equal opportunities for people with Down syndrome.

Supporting people with Down syndrome into employment

There are various existing statutory duties in place that require:

schools to promote employment as an outcome
local authorities to consider employment in care needs assessments and planning
employers to make reasonable adjustments to:
- support people with Down syndrome into lasting and meaningful employment
- meet their employment duties in relation to preventing disability discrimination in the workplace

The overwhelming majority of learners with Down syndrome can access fulfilling jobs and careers with the right preparation and support. They should all be supported with a careers programme that follows the Gatsby Benchmarks. It might be useful to consider using vocational profiling to help learners to understand what they’re interested in and why. Schools and colleges should carefully match the opportunities to the abilities, needs and aspirations of the learner.

The statutory Careers guidance and access for education and training providers sets out legislation and good practice for:

maintained schools and academies in England
further education colleges
sixth form colleges
independent training providers

The careers leader should work closely with the relevant teachers and professionals in their school or college - including the SEN co-ordinator and inclusion teams and the careers adviser - to identify the guidance needs of all learners with SEND and put in place personalised support and a transition plan. This may include helping learners with SEND and their families understand the full range of relevant education, training and employment opportunities, such as apprenticeships, supported internships (for learners with EHC plans) or routes into higher education.

The transition plan should include the ways employees with SEND can be supported in the workplace, covering:

disability rights
supported employment
how jobs can be adapted to fit a person’s abilities
job coaching
reasonable adjustments for disabled people in the workplace
Access to Work
advice on self-employment (for example, micro-enterprise), which can also be especially relevant for some learners with SEND

Every learner should have first-hand experiences of workplaces to help their exploration of career opportunities and expand their networks. Work experience is an important part of any high-quality careers programme, helping to ensure that young people develop relevant skills for work, and supporting transitions from education and training into skilled employment.

For learners with Down syndrome, workplace experiences can raise aspirations and encourage learners to understand the options available to them around future career and progression pathways. A progressive approach to experiences through the programme of study will support the learner to gain confidence and develop the skills and knowledge needed.

Schools and colleges may be expected to work with the employer to put in place additional support during work placements. Additional support might be expected to help ensure the learner is fully prepared for the workplace so that the experience is valuable.

Under the Children and Families Act, schools must co-operate with local authorities, which have an important role to play through their responsibilities for SEND support services, EHC plans, and the promotion of participation in education and training.

DWP is working to smooth young people’s transition into employment - for example, through the Access to Work Health Adjustment Passport. The passport aims to raise awareness of in-work support and empower young people to have more structured conversations with employers about their support needs.

Transitioning from education to employment

Being supported towards greater independence and employability can be transformative for children and young people with Down syndrome. All professionals working with these children and young people should share high aspirations and have a good understanding of what support is effective in enabling them to achieve their ambitions. Conversations about future aspirations and pathway opportunities should take place as early as possible to help a smooth transition from education to employment.

From year 9 onwards (ages 13 to 14), local authorities must undertake annual reviews for children and young people who have an EHC plan, including those with Down syndrome, which focus on preparing for adulthood and independent living. It can be helpful for EHC plan reviews before year 9 to have this focus too. This is a crucial opportunity to work collaboratively to build a young person with Down syndrome’s awareness and understanding of how to find employment.

As part of their EHC plan and review process, children and young people with Down syndrome should expect employment to be promoted as an attainable outcome with appropriate support - this reflects duties under section 37 of the Children and Families Act. You may wish to refer to the ‘Employment needs of people with Down syndrome’ section above to help consider how to tailor this support for children and young people with Down syndrome.

Education and training should include help for students who need it to develop skills that will prepare them for work or self-employment, such as:

communication and social skills
using assistive technology
independent travel training
setting up a micro-enterprise

Schools and colleges should pay particular attention to work placements for students with SEND. They can be particularly helpful where students find it difficult to imagine a work context and counter low aspirations. We recommend using vocational profiling to help students to understand what they’re interested in and why.

When arranging these placements, schools and colleges should carefully match the placement to the abilities, needs and aspirations of the student. Schools and colleges may need to work with the employer to put in place additional support to ensure the student with SEND is fully prepared for the work placement so that the experience is valuable.

In preparing young people for employment, local authorities, schools and colleges should be aware of the different employment options for disabled adults. This should include ‘job-carving’ - tailoring a job so it is suitable for a particular worker and their skills. This approach not only generates employment opportunities for young people with SEN but can also lead to improved productivity in the employer organisation.

In accordance with the SEND code of practice: 0 to 25 years, local authorities should identify, within their SEND local offer, the following services available to young people in the area to provide a smooth transition from education and training into employment:

training opportunities
supported employment services
apprenticeships
traineeships
supported internships

As outlined in statutory guidance on Participation of young people: education, employment or training, local authorities should work with schools, colleges, other post-16 providers and other agencies to:

support young people to participate in education or training
identify those in need of targeted support to help them make positive and well informed choices

Further guidance to support effective transitions more broadly is set out in section ‘2. High-quality and holistic healthcare’ above.

Government support for those seeking employment

DWP offers support to disabled people and those with long-term health conditions through its Jobcentre Plus offices. This support includes:

working with a disability employment adviser where additional bespoke support would benefit the customer
Additional Work Coach Support (more time with a work coach), which provides increased one-to-one personalised support

Currently, the National Careers Service offers free, impartial advice on careers, skills and the labour market across England. This includes a universal digital offer and a multichannel service delivered by careers advisers based in local communities. Advisers are co-located in most Jobcentre Plus offices, and also operate in community centres, libraries, training providers and employer settings.

As outlined in both the Get Britain Working White Paper and the Pathways to Work: Reforming Benefits and Support to Get Britain Working Green Paper, the government is committed to expanding access to personalised employment support for anyone who wants to work, including those with health conditions or disabilities. This will be delivered through the forthcoming Jobs and Careers Service.

To ensure disabled people can access the support they need in work, DWP also provides Access to Work funding. This is a demand-led, discretionary grant that contributes to the extra disability-related costs of working faced by disabled people and those with a health condition in the workplace, which go beyond standard reasonable adjustments. It does not replace an employer’s duty under the Equality Act to make reasonable adjustments.

The Access to Work grant can provide personalised support to enable disabled people to move into or retain employment, including:

workplace assessments
travel to or from work, where there are additional costs due to the nature of the employee’s disability or health condition
job coaching for up to a period of 26 weeks and, in exceptional circumstances, up to 39 weeks
communication support at job interviews if a person has a physical or mental health condition or learning difficulty
support workers
specialist aids and equipment for days that a young person is at the employer’s premises or workplace

Young people with EHC plans on supported internships can claim Access to Work funding to support them in their work placement, where needed.

Applicants (or their appointee) can ask for a third party to help them apply for and claim Access to Work funding. Employers can also help their employees to send their claims to Access to Work.

DWP has an in-work progression offer that provides extra support from specialist in-work progression coaches. More information on this can be found in any DWP Jobcentre Plus office.

Any person with Down syndrome who is on benefits and has no work-related requirements can seek support from Jobcentres on a voluntary basis.

Adjustment passports and planners

To enable disabled people to move more easily into employment and between job roles, DWP’s Access to Work has developed a series of adjustments passports and planners. These support transitions into employment by providing:

a tool to enable disabled people to have structured conversations with employers about disability
a transferable record of adjustments
signposts to support available, including Access to Work

The Health Adjustments Passport supports the user throughout their working life by reducing the need to repeat personal information about their disability, and supporting more structured conversations with employers about disability and adjustments.

The Student Adjustments Planner was introduced to help provide disabled students with the confidence and certainty they need as they enter the world of work, enabling them to make informed career choices and achieve their aspirations. The planner:

provides the student with an up-to-date record of their adjustments and in-work support needs
can be used to support structured conversations about disability and adjustments with employers and lecturers
if the student applies for Access to Work, can remove the need for an assessment (allowing support to be put in place more quickly)

At present, an easy read version of the Student Adjustments Planner is unavailable. DWP is seeking to remedy this in due course.

Supported employment programmes

DWP’s Local Supported Employment programme, which runs until May 2026 in 27 local authorities, provides support for people with learning disabilities and autistic people to find and retain work through intensive one-to-one support based on an evidence-based approach to supported employment.

Building on learning from the Local Supported Employment programme, Connect to Work is DWP’s new voluntary, locally led supported employment programme, which will help disabled people, people with health conditions and those with complex barriers to employment to get and stay in work.

There are 2 main frameworks within supported employment:

Individual Placement and Support
the Supported Employment Quality Framework

The latter has been specifically designed to support people with learning disabilities and autism to get into sustainable employment, and has a proven track record in doing so.

Supported internships

Since September 2013, DWP’s Access to Work scheme has provided support for DfE’s supported internship programme.

Supported internships are a work-study programme for young people aged 16 to 24 (or 25 if the internship is completed before the end of the academic year during which the young person turned 25) who:

have an EHC plan
want to move into employment
need extra support to do so

They equip young people with the skills they need to build their confidence, and secure and sustain employment through learning in the workplace. Interns receive support from a qualified job coach who is trained to offer personalised support and instruction in a way that maximises their potential to acquire skills and independence (known as systematic instruction).

DWP has a dedicated Access to Work Supported Internship Team who provide a central point of contact and a direct route for applications.

Personal Independence Payment

People with Down syndrome may receive benefits such as Personal Independence Payment (PIP).

PIP is non-means-tested, non-taxable and non-contributory. This means that PIP can be paid to those who are in full or part-time work as well as those out of work.

PIP provides a contribution towards the extra costs associated with a person’s long-term health condition or disability. The priority is to support those facing the greatest challenges to live an independent life.

VCSE sector-based supported employment providers and other services

Help to support people who are disabled into work is available from supported employment services. These can provide expert, individualised support to secure sustainable, paid work. This includes support in:

matching students to suitable work placements
searching for a suitable job
providing training (for example, from job coaches) in the workplace when a job has been secured

Local authorities should include supported employment services in their local offer.

Statutory guidance on Local skills improvement plans highlights the important role that national bodies with a focus on disability employment, supported employment providers and local disability groups led by disabled people can play in understanding the barriers faced by employers and learners with disabilities. They can help explore how employers and providers can work together to unlock the full potential of learners with SEND and thus help them progress into jobs that meet local skill shortages. This encompasses and applies to people with Down syndrome.

Apprenticeships

Apprenticeships are structured training programmes that combine practical on-the-job experience with off-the-job learning, allowing apprentices to earn a wage while working towards a recognised qualification.

Apprenticeships offer a high-quality alternative to academic or classroom-based qualifications. They provide a good opportunity for young people to take up employment, while also gaining the necessary knowledge and skills they need to progress in their chosen career.

Local authorities should work with local partners to play an active part in developing and promoting local apprenticeship schemes for people with SEND by proactively engaging employers and supporting them to recruit apprentices with Down syndrome.

Apprenticeships are available for anyone aged 16 and over, and from level 2 (GCSE equivalent) to level 7 (master’s degree equivalent). They are for:

young people starting their careers
existing employees enhancing their skills
workers retraining in a new occupation

Apprentices declaring a learning difficulty or disability accounted for 15.3% of new starters in 2022 to 2023. This proportion has risen steadily from 10.1% in 2015 to 2016.

To support employers to access apprenticeships, they could receive £1,000 towards the costs of workplace support when they take on an apprentice aged 16 to 18 (or 19 to 25 with an EHC plan), as well as to cover the extra costs apprentices may have as a result of their disability.

Additional learning support funding of up to £150 per month is available to training providers to make reasonable adjustments that support apprentices who have learning difficulties and disabilities, including those with Down syndrome.

Where an apprentice has a learning difficulty or disability that is a barrier to them achieving the standard English and maths requirements, there is the flexibility for them to achieve the lower level 3 qualification in the adjusted subject. From August 2024, this has been extended to new apprentices with a learning difficulty or disability but no EHC plan.

DfE guidance on Support for apprentices with a learning difficulty or disability:

outlines how additional learning support funding helps eligible apprentices to access and complete their learning, where a reasonable adjustment is provided and evidenced
provides details of how apprenticeship providers should assess the needs of the apprentice to identify any barriers to them achieving the standard English and maths qualifications that may be required

Supporting employers

The government is committed to supporting employers (including local authorities) to become more confident recruiting people with disabilities, including people with Down syndrome.

DWP’s Employing disabled people and people with health conditions guidance includes links to websites and resources to help employers become more confident when attracting, recruiting, developing and retaining disabled people.

The Work and disabled people page on GOV.UK provides links to advice for disabled people on recruitment, and their rights around reasonable adjustments at work, including detail on reasonable adjustments that must be put in place as set out in the Equality Act.

Under the Equality Act, employers must make reasonable adjustments to ensure disabled people are not put at a substantial disadvantage when doing their jobs in comparison with those who are not disabled.

There are a number of reasonable adjustments that someone with Down syndrome might require. This may include:

requesting shorter working hours
asking for tasks to be given in a different way (for example, broken down into small steps with clear instructions or using the ‘show and tell’ method of training)

As mentioned above in ‘Government support for those seeking employment’, the government provides Access to Work grant funding for people who may require additional support, including for expenses such as assistive technologies or support workers (this is not a substitute for the employer’s legal obligation to make reasonable adjustments or pay for them).

Through the Disability Confident employer scheme, DWP continues to work with employers to provide them with the knowledge, skills and confidence they need to attract, recruit, retain and develop disabled people and those with long-term health conditions in the workplace. The scheme encourages employers to think differently about disability and take positive action to address the issues disabled employees face in the workplace.

Disability Confident encourages member organisations to make adjustments throughout the recruitment process - and this is a core commitment of the scheme. The Employing disabled people: Disability Confident and CIPD manager’s guide provides further information on reasonable adjustments for employers.

In 2024, DWP launched the Support with employee health and disability service to support employers managing health and disability in the workplace. This includes tailored guidance on:

health disclosures and having conversations about health
legal obligations, including statutory sick pay
making reasonable adjustments to support employees to remain in work

Local authorities can play an important role in supporting people with Down syndrome into employment by making sure that this is considered in needs assessments and in the exercise of their other care and support functions.

This could include signposting, as appropriate, to:

Jobcentre Plus or other specialist employment providers for help in finding and securing employment
Access to Work for support with extra costs of attending interviews or meeting necessary workplace adjustments
other appropriate benefits and agencies that can help people with Down syndrome to secure, and keep, a job

In an assessment under the Care Act, local authorities must:

consider whether an adult requires care and support to access and engage in work, training, education or employment
if they have eligible needs in this regard, work with the adult to decide how those needs will be met

Local authorities must also consider:

whether matters - other than the provision of care and support - could contribute to the achievement of the outcomes a person with Down syndrome wishes to achieve in day-to-day life
whether the adult would benefit from:
- preventative services (under section 2 of the Care Act)
- information and advice services (under section 4 of the Care Act)
- other services that may be available in the community

Question 10

6. Appropriate housing

Accepted Answer

This section:

describes the steps that local authorities and housing providers should take to support people with Down syndrome to access appropriate housing
aims to clarify the support and services that people with Down syndrome can expect to receive to meet their housing needs

This section is for organisations providing housing or housing support for someone with Down syndrome. This could include:

local housing authorities
local authorities (such as county and district councils)
private and VCSE sector providers
registered providers of social housing
commissioned care and support providers

This section should also help people with other conditions and/or a learning disability who have similar needs to those with Down syndrome.

People with other chromosomal conditions, genetic conditions and/or a learning disability must benefit from equivalent support under the Equality Act (if they qualify as people with a disability under that act), and may benefit from equivalent support to people with Down syndrome where they have similar needs.

See the previous section on ‘Equalities and application of this guidance to people with other conditions’ for further information on the wider benefits of this guidance for people with similar needs to those with Down syndrome.

This section covers the following legislation which is considered a ‘relevant function’ under the DS Act as well as wider legislation which is relevant to support for people with Down syndrome:

Our housing aspirations for people with Down syndrome

It is important that every person with Down syndrome has access to high-quality, suitable housing that meets their needs.

We want people with Down syndrome to be able to live as independently as possible in a home of their choice with access to the amenities they need. For example, this might mean living close to their place of work or having access to good transport links. People with Down syndrome should have choice and control over what accommodation and support is required to help them achieve this.

We expect local housing authorities to:

ensure that people with Down syndrome have access to the information and advice required to make informed housing decisions
work with other relevant services, such as social care, to provide a tailored and seamless service

It is essential that housing authorities have a good understanding of the needs of people with Down syndrome - from ensuring housing information is delivered in an accessible way through to supporting people to make adaptations to their homes. Local housing authorities should take these needs into account when carrying out their duties - including during the planning process - to ensure suitable housing is available for people with Down syndrome now and in the future.

Housing needs of people with Down syndrome

It is important to consider the specific areas of support that people with Down syndrome may need to access high-quality, appropriate housing. They are likely to need:

Supporting people with Down syndrome to find somewhere to live

This guidance refers to housing duties under a number of acts. Local authority housing is covered in the Housing Act 1985, relating to the provision of housing and a duty to review housing needs. The Housing Act 1988 covers private registered providers of social housing, and the Housing Act 1996 covers allocations of social housing and the provision of homelessness assistance.

Part 1 of the Housing Grants, Construction and Regeneration Act 1996 and the Regulatory Reform (Housing Assistance) (England and Wales) Order 2002 cover housing adaptations.

Providing access to good-quality, suitable housing

It is important that people with Down syndrome have access to housing that meets their needs, and local housing authorities have a duty to ensure this happens.

To achieve this, local housing authorities are expected to:

understand the housing and support needs of people with Down syndrome
consider how these needs may change over time - for example, as people with Down syndrome age and may develop conditions such as dementia
ensure that this is factored into their plans for housing provision

The presumption should be that people with Down syndrome are supported to live independently in the community, where that is their preference. There are a wide variety of housing options that may be appropriate and, depending on their needs, people with Down syndrome may choose to live:

with family or friends
in their own home, which they may either own or rent
in supported housing, where the accommodation is designed or designated to be provided alongside support or care to help people live independently
in a shared lives scheme, where someone who needs care is matched with an approved carer
in residential care homes, with or without nursing, that are registered with CQC (allocated based on eligibility under the Care Act)

People with Down syndrome may choose to live in supported housing and may be able to access housing benefit to help meet the cost of rent.

The Ministry for Housing, Communities and Local Government has published guidance on Supported housing: national statement of expectations, which local authorities should follow in developing plans for local supported housing.

Local authorities should also be aware that the Supported Housing (Regulatory Oversight) Act 2023 became law in August 2023. The legislation:

enables the government to introduce national standards for supported housing in England and local authority licensing schemes to enforce the standard
requires local authorities to produce supported housing strategies to assess current and future need for supported housing in their area, including consideration of people with Down syndrome

The government recently consulted on the implementation of the act and plans to publish the Supported Housing regulation: consultation response later in 2025.

Where the duty to provide housing is on a local housing authority, this is usually the district council, relevant London borough or unitary authority.

In 2-tier areas, where there is a district council and a county council, it is the county council that has responsibilities for social care and, therefore, has the majority of the health and care duties set out in previous sections ‘2. High-quality and holistic healthcare’ and ‘3. Independence through social care’ above. County and district councils should work together where the responsibility for housing and social care is split between them.

Local authorities that have social care responsibilities (county councils and unitary authorities, including London boroughs) may also provide accommodation through their social care responsibilities (for example, through supported housing or residential care placements).

Local authorities should be aware of Building the right home: NHS housing national guidance for people with a learning disability and autistic people. As outlined, we know that most people with Down syndrome are very likely to have some level of learning disability and Down syndrome is associated with an increased incidence of co-occurring conditions such as autism. This guidance outlines how a range of housing options can be provided to support people to leave mental health hospitals, or prevent them needing admission to one. NHS England capital funding can be granted to purchase and develop accommodation under sections 256 and 257 of the National Health Service Act 2006.

Under the National Planning Policy Framework, local planning authorities should make use of the Housing: optional technical standards for accessible and adaptable housing, where this would address an identified need. This may be appropriate for people with Down syndrome who have a lower level of need. Local authorities should assess the size, type and tenure of homes required for different groups in the community, including people with Down syndrome and other disabled people, and reflect this in their planning policies.

Further information is included in the planning practice guidance on:

Housing for older and disabled people
the National design guide
the National Model Design Code

Ensuring people with Down syndrome have choice and control over housing

People with Down syndrome should have choice and control over what type of accommodation they live in. This includes having a say about where they live and who they live with.

Local housing authorities should ensure that there are suitable housing options available to people with Down syndrome, and that the decision-making process takes into account their individual needs and preferences. For example, some people with Down syndrome may prefer to live with other people, while others may prefer to live alone.

Where a person with Down syndrome chooses to live with others, local housing authorities should ensure that the accommodation offered is suitable. For example, it would likely not be appropriate to offer a tenancy to a young adult with Down syndrome in shared supported housing occupied by only older people.

People with Down syndrome have their own interests, hobbies and goals, and should have access to housing that supports them to pursue these. This includes providing people with a choice over the location of their accommodation so they can make an informed decision based on, for example, how close it is to public transport, amenities, shops, work and leisure activities.

Housing decisions should not be made in isolation and local housing authorities should consider where people with Down syndrome are likely to need support to live independently. For example, if a person’s needs are high enough to meet thresholds for support, they should be offered a choice of suitable accommodation to meet these needs, such as supported living, residential care, a shared lives scheme or living in the family home with support.

To be allocated a home, applicants must be eligible and qualify under a local housing authority’s allocation scheme. In framing their allocation scheme to determine allocation priorities, local housing authorities must ensure that reasonable preference is given to certain categories of people, including people who need to move on medical or welfare grounds (such as grounds relating to disability).

Under section 166A (1) of the Housing Act 1996, local housing authorities must have an allocation scheme that:

determines their priorities when allocating housing accommodation provided by themselves or others
defines the procedures to be followed in allocating housing accommodation

Under section 166A (2), local housing authorities must set out their policy on offering people, including people with Down syndrome, a choice of accommodation or the opportunity to express preferences about the accommodation to be allocated to them, as part of the local housing authority’s allocation scheme.

Providing accessible information on housing

To ensure people with Down syndrome have choice and control over where they live, it is essential that they have access to information and advice on the housing options available to them in their area. This should include, for example, information on:

their housing rights
the different types of tenure on offer
how to access the housing and support they need
how to raise concerns if they are not offered the most appropriate housing choice to meet their needs

Under the Equality Act, local housing authorities have a duty to make reasonable adjustments to services for disabled people - this may include providing:

information and advice in a way that is accessible to people with disabilities, including people with Down syndrome
assistance throughout the decision-making process, where needed

Local housing authorities must make reasonable adjustments for disabled people in accordance with their needs, including people with Down syndrome. This support may include the provision of information and advice in large print and easy read formats, as well as video guides or audio information for people with Down syndrome who cannot read. Local housing authorities should also have in place additional support to explain the application process, where needed, and help people with Down syndrome and their carers to complete the application form.

An understanding of the communication, housing and support needs of people with Down syndrome is crucial to the effective delivery of advice and information. Local housing authorities should:

take these needs into account when designing and delivering their information and advice services
ensure their staff have the necessary training to provide them

See section ‘1. Accessible and person-centred services’ above for guidance on how to ensure service are accessible.

Under section 166 (1) of the Housing Act 1996, local housing authorities must make sure that:

advice and information about the right to apply for an allocation of housing accommodation is available
any necessary assistance in making an application is available for people who are likely to have difficulty in doing so without assistance

Any advice and information or necessary assistance must be available free of charge to applicants in their district.

Local authorities must make sure information and advice on housing is accessible for people with Down syndrome, in accordance with their duty under the Equality Act.

Supporting people with Down syndrome to live independently

People with Down syndrome, and their carers or families, should not have to justify why they want to live independently. It is something that many people with Down syndrome strive for in the housing setting of their choice.

It is important that there are suitable housing options available to support successful independent living. This may include adaptations to properties to suit individual needs and/or the provision of social care support - see section ‘3. Independence through social care’ above.

Local housing authorities have a duty to help eligible people with Down syndrome, who satisfy a needs assessment, to make adaptations to their homes by providing funding to cover the cost of these adaptations.

Disabled Facilities Grants are the funding provided to local authorities to help them meet this duty. Local housing authorities should be aware that the needs of a person with Down syndrome may change over time, and so multiple adaptations may be required as they grow older.

The types of adaptations that may be considered include:

making the accommodation safer (for example, adapted smoke alarms for people with limited hearing)
access to bedrooms (for example, with grab rails or stairlifts)
accessible toilets, bathrooms, showers and other washing facilities
adaptations to the kitchen (for example, lower worktops)
better heating (for example, people with lower mobility who remain in one room for long periods usually need a warmer home than non-disabled people)
accessible controls for lighting, heating and power

Under the Housing Grants, Construction and Regeneration Act 1996, local housing authorities must provide a grant to fund adaptations for disabled people who satisfy a needs assessment, eligibility criteria and a means test. Local housing authorities must make reasonable adjustments to help disabled people make an application for home adaptations under this duty, free of charge.

In complex cases that require major adaptations, local authorities should engage occupational therapists to lead on making the assessment for people with Down syndrome.

Local authorities can find further guidance on how they should discharge their duties around home adaptations in the Disabled Facilities Grant (DFG) delivery: guidance for local authorities in England.

Local housing authorities also have powers to provide financial assistance for adaptations for those that do not qualify for funding under the duty set out above. The Regulatory Reform (Housing Assistance) (England and Wales) Order 2002 provides local authorities with flexibilities to provide grants for adaptations beyond the statutory requirements in the Housing Act 1996.

Supporting people with Down syndrome who are homeless

There are a number of reasons why someone may become homeless. If a person with Down syndrome becomes homeless, housing officers must consider appropriate provisions to ensure accessibility to their services.

People with Down syndrome may be at particular risk of homelessness if their support or care arrangements are at risk of breaking down. As such, it is important that housing officers understand what preventative action to take should this situation arise.

Where support or care arrangements are at risk of breakdown, housing and social care colleagues should consider whether an assessment of any carer’s support needs might help prevent the risk of homelessness, and a support plan could help meet those needs. It is also important that safeguarding partners within the local authority consider whether the person with Down syndrome who is homeless, or at risk of homelessness, may be experiencing abuse or neglect - and, if so, the relevant safeguarding Care Act provisions are enforced to safeguard them.

If homelessness is not successfully prevented or relieved, a housing authority will usually owe the main housing duty to applicants who are eligible, have a priority need for accommodation and are not homeless intentionally. People with Down syndrome qualify as having a disability under the Equality Act and, therefore, housing officers must take this into account should a person with Down syndrome become homeless.

When assessing if someone with Down syndrome has priority need for accommodation, housing officers are required to consider if they are vulnerable as a result of a disability. Officers must ensure any accommodation provided under the homelessness duties is suitable to the person and their household’s needs.

For example, careful consideration should be given to anyone with Down syndrome who may have a particular need to remain in a specific area, such as to maintain links with health service professionals.

When carrying out duties under part 7 of the Housing Act 1996, housing officers must consider appropriate provisions to:

ensure accessibility to their services for people with Down syndrome
comply with their safeguarding duties as set out in the Care Act
ensure that suitable accommodation is available for the applicant and their household under the duty - for example, through the offer of a settled home, such as a suitable secure or introductory tenancy with a local authority

The Supported Housing (Regulatory Oversight) Act 2023 includes an amendment to homelessness legislation clarifying that someone cannot be found to be intentionally homeless if they have left supported exempt accommodation because the quality of the accommodation or the support, standard of care or supervision provided there does not meet the national standards.

Question 11

7. Where to find help and support

Accepted Answer

We recognise that people with Down syndrome and their families and carers may want to know what they can do if they feel this guidance is not being reasonably followed. This section of the guidance has been written to help the public understand their options if they are not receiving the care and support they are entitled to.

Steps to take if a person is dissatisfied with their care

There may be some cases where it is appropriate to depart from the guidance, but if a person is not receiving the support or services they are entitled to from health, education or local authorities (in respect of social care or housing), there are steps they can take to raise concerns or complaints.

Ideally, people should try to resolve issues locally before needing to escalate.

Local authorities and NHS bodies must make arrangements for dealing with complaints under Local Authority Social Services and National Health Service Complaints (England) Regulations 2009.

These complaints processes must ensure that, among other things:

complainants are treated with respect and courtesy
complainants receive, so far as is reasonably practical, assistance to help them understand the complaints procedure or advice on where to get this help

Step 1: raise a concern with the relevant provider

A first step is to raise concerns (or make complaints) to the relevant service commissioner or provider directly.

If someone finds it difficult to understand their care and support or speak up, there are people who can act as a spokesperson for them. The NHS has information on finding Someone to speak up for you (advocate).

For other sources of advice on advocacy support when making NHS complaints, visit the VoiceAbility and Pohwer websites or the Speakup Self Advocacy Groups portal.

Step 2: escalate the complaint to the appropriate ombudsman

If a person has reached the end of the complaints process and is not happy with the organisation’s final decision, there is the option to raise concerns with the appropriate ombudsman.

An ombudsman is an independent person who has been appointed to look into complaints about companies and organisations. Further information on how to find out who the most appropriate ombudsman is, depending on the nature of the complaint, can be found in ‘Routes to redress’ below.

Step 3: take legal action

Finally, there are formal legal routes that can be pursued, such as a judicial review, if a member of the public thinks a public body has not complied with its legal duties or acted unfairly in some other way. This should be a last resort when they have tried all other routes and they will likely need independent legal advice.

Other options: contact a regulator

Alternatively, people can share their experiences with and concerns about individual services with appropriate regulatory bodies, such as CQC in the case of health and adult social care services, or Ofsted in the case of education.

Routes to redress

Routes to redress vary by type of organisation and the nature of the complaint, as follows.

Health

Members of the public have the right to make a complaint about any aspect of NHS care, treatment or service, and this is written into the NHS Constitution for England. Under the Local Authority Social Services and National Health Service Complaints (England) Regulations 2009, all health and social care services must have a procedure for dealing with complaints.

To make a complaint under the NHS complaints procedure, people can contact the provider or the commissioner of the service they have received or tried to access. The public can contact their local ICB to complain about:

primary care services (GPs, dentists, opticians or pharmacists)
secondary care (such as hospital care, mental health services, out-of-hours services, NHS 111 and community services like district nursing)

Every ICB will have its own complaints procedure, which is often displayed on its website - see Find your local integrated care board (ICB).

Contact NHS England for complaints about specialised services that support people with a range of rare and complex conditions.

People should contact their local council if the complaint is about public health organisations, which provide services that prevent disease, promote health and prolong life - visit Find your local council.

Parents can make a complaint on behalf of their child if:

If the child has such competency, parents can make a complaint with the child’s consent.

People can also contact the Patient Advice and Liaison Service (PALS) at their local hospital to get advice, support and information on health-related matters.

The NHS England Ask Listen Do scheme provides accessible resources to help children, young people and adults with Down syndrome to raise concerns or make complaints about education, health and social care.

If someone has made a complaint to their local provider or commissioner but is not satisfied with how it went, they have the right to ask for an independent review by the Parliamentary and Health Service Ombudsman (PHSO). PHSO can report a non-compliant body to the ICB or regulator. Recently, PHSO has changed the way it handles NHS complaints to prioritise significant service failings - this means it will only look further into the more serious complaints about the NHS. People can only submit a complaint to PHSO if:

they are not seeking legal action
there isn’t reasonable legal action they could seek

A member of the public can seek legal action in some circumstances - for example, if someone has been injured as a result of negligent treatment - see NHS Resolution’s Advice for claimants.

A discrimination claim in County Court can be made if someone thinks that they have been discriminated against (as set out in the Equality Act).

A judicial review can be used to challenge decisions urgently, if someone thinks the NHS has acted unlawfully.

Finally, a person may take legal action if they think that the NHS has breached one or more of their rights under the Human Rights Act.

If someone has seen or experienced poor care from a registered healthcare provider, they can share their experience with CQC. While CQC is not able to take forward individual complaints, the organisation can help them to take action to protect others - for example, they may decide to:

gather further information
carry out an assessment
take enforcement action against providers

CQC also welcomes information about experiences of good care.

CQC also has a duty to review any complaints from people subject to the Mental Health Act, or relating to issues experienced during a previous detention, and to exercise the power to investigate. For more information, visit Complain about the use of the Mental Health Act.

If someone is unhappy with a social care service, including a care home or home care, they may want to speak to the service provider first. The organisations that provide these services will have their own complaints arrangements.

People can also raise concerns directly with their local council if they prefer.

The public also has the right to take their complaint to the Local Government and Social Care Ombudsman (LGSCO), which is independent of local authorities and care providers. For complaints about children’s services, there is an LGSCO statutory complaints procedure local authorities must follow.

People can raise experiences of poor health and social care with CQC. While CQC is not able to take forward individual cases, the organisation can help them to take action to protect others as outlined in ‘Health’ above.

Finally, people can also make a complaint to Ofsted where they think a local authority is not fulfilling its duties in respect of children. Ofsted has a responsibility to inspect local authorities and the way that they carry out their functions.

Education

If someone has raised issues with a school, early years setting or provider and is unhappy with the response, they can raise a complaint through Ofsted. Ofsted will not investigate individual complaints but will make sure the relevant school, early years setting or provider is following all registration requirements.

All local authorities have a responsibility to consider complaints about:

EHC needs assessments
special education provision
exclusion of pupils from schools
child protection
complaints about school transport

LGSCO can investigate if a council has failed to appropriately address a child’s SEN. This includes:

delays in assessing a child and issuing an EHC plan
failing to implement this or carry out an annual review

People should normally complain to the council first, but LGSCO will consider the complaint if:

the individual is unhappy with the final outcome
the council is taking too long to look into the matter

Although not legally binding, in practice local authorities usually agree to recommendations made by LGSCO.

People can also apply to the First-tier Tribunal (Special Educational Needs and Disability), which handles appeals against local authority decisions regarding EHC needs assessments and care plans. The tribunal also hears claims of disability discrimination by a school against a child or young person. Before bringing an appeal to the SEND Tribunal, mediation should be considered.

In addition, under sections 496 and 497 of the Education Act 1996, the public can make a complaint to the Secretary of State for Education if they think either the governing body of a maintained school or a local authority has:

acted unreasonably
failed to carry out one of its duties under the Education Act, including their SEN duties

They would usually be expected to have tried other routes (such as complaining to the school or council) before making a complaint to the Secretary of State.

Housing

Letting and managing agents in England have to belong to either the Property Ombudsman or the Property Redress Scheme. Each scheme publishes a list of members on their websites. The agent redress schemes cover disputes between consumers and private property agent businesses.

In the social housing sector, the Housing Ombudsman Service investigates complaints about registered providers of social housing, such as local authorities and housing associations. If a person makes a complaint to their landlord but is unhappy with how they have dealt with it, they can escalate the complaint to the Housing Ombudsman.

If a resident with Down syndrome is unable to bring the complaint to the service themselves, the Housing Ombudsman will accept a complaint from somebody acting as a representative on their behalf - visit A complaint for somebody else on the Housing Ombudsman Service website.

If someone has been denied social housing or homeless assistance, you can make a complaint to LGSCO.

Question 12

References

Accepted Answer

Information and resources by topic - Demography. Down Syndrome Medical Interest Group (DSMIG), 2020 (viewed September 2025).
Dodd A, Broxholme S, Campbell A and others. Dementia and people with intellectual disabilities: guidance on the assessment, diagnosis, interventions and support of people with intellectual disabilities, 2025 (2nd edition). The British Psychological Society and the Royal College of Psychiatrists.
Office for National Statistics. Disability and crime, UK: 2019, 2019 (viewed September 2025).
The Lancet Neurology (editorial). Dementia in Down’s syndrome: still much to learn. The Lancet Neurology 2016: volume 15, issue 8, article P775.
Chicoine B. Diagnostic overshadowing: “all is not Down syndrome”, 2022. Advocate Medical Group: Adult Down Syndrome Center.
Down’s Syndrome Association. Bones, muscles and skin, 2024 (viewed September 2025).
Allison DB, Gomez JE, Heshka S, Babbitt RL, Geliebter A, Kreibich K and Heymsfield SB. Decreased resting metabolic rate among persons with Down syndrome. International Journal of Obesity and Related Metabolic Disorders 1995: volume 19, issue 12, pages 858 to 861.
Watchman K. Mythbusting guide to Down’s syndrome and dementia, 2024. Alzheimer’s Society.
Traboulsi EI, Levine E, Mets MB, Parelhoff ES, O’Neill JF and Gaasterland DE. Infantile glaucoma in Down’s syndrome (Trisomy 21). American Journal of Ophthalmology 1988: volume 105, issue 4, pages 389 to 394.
DSMIG. ‘Opthalmic problems’ (PDF, 151KB). Guidance for essential medical surveillance, 2012 (viewed September 2025).
Keiser H, Montague J, Wold D, Maune S and Pattison D. Hearing loss of Down syndrome adults. Journal of Mental Deficiency 1981: volume 85, issue 5, pages 467 to 472.
Dietrich T, Webb I, Stenhouse L and others. Evidence summary: the relationship between oral and cardiovascular disease. British Dental Journal 2017: volume 222, pages 381 to 385.
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.
Dierssen M, Herault Y, Helguera P, Martinez de Lagran M, Vazquez A, Christian B and others. Building the future therapies for Down syndrome: the third international Conference of the T21 Research Society. Molecular Syndromology 2021: volume 12, issue 4, pages 202 to 218.
Mencap. Learning disability explained - Down syndrome, 2025 (viewed September 2025).
Will EA, Daunhauer LA, Fidler DJ, Raitano Lee N, Rosenberg CR and Hepburn SL. Sensory processing and maladaptive behaviour: profiles within the Down syndrome phenotype. Physical and Occupational Therapy in Pediatrics 2019: volume 39, issue 5, pages 461 to 476.
DWP. Is work good for your health and well-being? An independent review, 2006 (viewed September 2025).

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Our healthcare aspirations for people with Down syndrome

The health needs of people with Down syndrome

Designing and planning health services

System planning and leadership

Executive leads on integrated care boards

Co-production with people with Down syndrome, their families and carers

Reducing inequalities

Using data to inform future health service provision

Delivering health services that meet the needs of people with Down syndrome

Neonatal and postnatal care

Universal support for families

General practice

Optometry and eye care

Audiology and hearing

Speech and language

Physiotherapy and occupational therapy

Dentistry

Mental health services

Access to community-based mental health and learning disability services

Dynamic support registers

Inpatient mental healthcare

Restrictive interventions in inpatient settings

Supporting physical health in inpatient settings

Care, (Education) and Treatment Reviews

Proposed mental health reforms

Grounds for detention

Establishment of dynamic support registers

Role of dynamic support registers in commissioning

Adherence to C(E)TRs

Provision of community support

Transition from children’s to adults’ services

Identifying and responding to increased risk of dementia for people with Down syndrome

Palliative and end-of-life care

3. Independence through social care

Our social care aspirations for people with Down syndrome

The social care needs of people with Down syndrome

Identifying the social care and support needs of people with Down syndrome

Children with Down syndrome

Looked-after children and care leavers

Transition from children’s to adults’ services and preparation for adulthood

Adults with Down syndrome

Carers of adults with Down syndrome

Young carers of adults with Down syndrome

Adult carers with Down syndrome