Research and analysis

Down syndrome needs profile paper

Published 5 November 2025

Applies to England

© Crown copyright 2025

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Introduction

Purpose of the paper

This paper reflects what was raised about the potential needs of people with Down syndrome through the Down Syndrome Act 2022 guidance: call for evidence, which ran from 19 July 2022 to 8 November 2022, and subsequent stakeholder engagement.

The needs identified from these exercises are categorised into sections on the topics of health, education, social care and housing, in order to provide evidence and support the Down Syndrome Act 2022 guidance. A section on the developmental needs of people with Down syndrome has also been included, which is not covered explicitly by the act, but emerged as a prominent theme across stakeholder engagement.

For the purpose of this paper, a ‘need’ is classed as an issue or challenge that may require support. Importantly, there is a wide range of variation in the needs of people with Down syndrome, and not all the needs discussed will be relevant to all people with Down syndrome.

The guidance will set out how people with Down syndrome can be supported, good practice examples and existing support guidelines in more detail. The below themes summarise what support people with the needs discussed in this paper may require. They include (but are not limited to):

  • early and targeted intervention
  • surveillance and routine screening for children, young people and adults
  • timely assessments and treatments
  • greater clinician awareness of the needs of people with Down syndrome
  • equal and accessible access to healthcare and services
  • support systems in place, for both the person and their family and/or carers
  • consideration of additional risks

These may be useful to consider when reading through the needs profile paper. However, as mentioned above, there is a wide range of variation in the needs of people with Down syndrome. Therefore, while considering information about the impact of Down syndrome on the categories within this paper, support must be tailored to individual presentation and needs.

Important caveats

The paper focuses on the needs that people with Down syndrome may experience. As such, the strengths of people with Down syndrome, or detailed guidance on how you might support those needs, are not in this paper’s scope, but may be referenced in supporting evidence where this was provided during the call for evidence exercise. Furthermore, the number of academic references listed under each need varies significantly but is not indicative of the importance or impact of the need to an individual.

A range of expert advisers were engaged with to learn more about the needs that were identified during the call for evidence, including medical professionals and experts by lived experience, who form the Department of Health and Social Care (DHSC)’s Down syndrome advisory group.

However, it is important to note that this is not a systematic literature review, and as such cannot be treated as an exhaustive review of the potential needs of people with Down syndrome. Similarly, although this paper was developed with the support of medical professionals, it has not undergone the same process as a medical paper.

Section structure

The paper is structured to categorise needs into sections on the topics of health, education, social care and housing. Refer to the following guidance when reading through this paper.

Need

Each section sets out the needs of people with Down syndrome, identified from the call for evidence findings and subsequent stakeholder engagement.

Description

Each need will be followed by a description. This text describes the identified need, including examples of the different types of issues related to this need.

Supporting evidence

Each need will have a section that lists academic papers and research submitted to DHSC that provides support to the needs identified.

Evidence has only been listed if it meets the criteria for inclusion (see Annex A below). Where a source is not listed, it is because no supporting evidence was identified during the analysis of the call for evidence or further engagement, or evidence submitted has not met the criteria for inclusion.

Conditions with overlapping need

Each need will then include a section that sets out where the call for evidence findings and further engagement indicated overlapping need between people with Down syndrome and people with other chromosomal conditions, genetic conditions and/or a learning disability (to note, this list is not exhaustive).

The needs of these people might be harder to discern than those with Down syndrome and, in many cases, may be more acute.

Healthcare needs of people with Down syndrome

This section sets out peer-reviewed journals submitted by experts on the topics of healthcare needs for people with Down syndrome.

The healthcare needs of people with Down syndrome can have wide-ranging and life-altering implications. The average life expectancy of a person with Down syndrome is now approximately 60 years and has increased substantially in recent years (The Lancet Neurology, 2016). As recently as 1983, a person with Down syndrome lived to be only 25 years old on average (Yang, Rasmussen and Friedman, 2002). In the 1940s, the average life expectancy for people with Down syndrome was 12 years (Esbensen, 2010).

Further information and guidance on healthcare needs can be found on the Down Syndrome Medical Interest Group (DSMIG) website. Specific links to relevant DSMIG webpages are included below academic references in each section, where available. For an overview of resources, see:

Cardiac issues 

Congenital heart disease (CHD) of various types complicates up to 50% of people with Down syndrome (Constantine and others, 2021). Congenital heart defects affect the normal working of the heart. Symptoms can include:

  • shortness of breath
  • chest pain
  • blue-coloured skin and nails
  • getting tired easily, especially after exercise

Heart disorders can vary in type and severity. Some are relatively mild and do not need surgical intervention, while others are serious and may need surgery.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, cardiovascular issues are present in approximately 80% of all patients with Williams syndrome (Collins, Kaplan and Rome, 2008).

Supporting sources are as follows:

Relevant DSMIG webpages are as follows:

Respiratory issues 

People with Down syndrome may be more vulnerable to having frequent respiratory infections, such as pneumonia. Some research suggests that, for people with Down syndrome, respiratory infections are the most common cause of death across the entire lifespan, ranging from 23% to 40% of deaths in adulthood (Bittles, Bower, Hussain and Glasson, 2007).

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research suggests that all people with a neurodevelopmental disorder appear to be at increased risk and mortality from respiratory illnesses, such as COVID-19.

Supporting sources are as follows:

Relevant DSMIG webpages are as follows:

Gastrointestinal issues 

People with Down syndrome may be more prone to conditions that affect the stomach and digestive system. This can be due to structural and functional gastrointestinal challenges, such as atresia or stenosis. Common challenges include:

  • vomiting and diarrhoea
  • constipation
  • food intolerance (for example, coeliac disease)
  • Hirschsprung’s disease
  • abdominal pain
  • gastro-oesophageal reflux
  • difficulties with toilet training for children with Down syndrome

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. People with Williams syndrome may be more prone to gastrointestinal issues partly due to the deletion of the elastin gene (Williams Syndrome Association, 2023). Common challenges include:

  • vomiting and diarrhoea
  • constipation
  • diverticular disease
  • gastro-oesophageal reflux
  • food intolerance (for example, coeliac disease)

Supporting sources are as follows:

Endocrine conditions  

Research suggests that endocrine conditions, including thyroid disorders and diabetes, are more prevalent among people with Down syndrome than the wider population. This includes hypothyroidism (an under-active thyroid), which may cause symptoms such as:

  • tiredness
  • slowing of growth
  • weight gain
  • constipation
  • sensitivity to cold
  • hair loss
  • dry skin

Endocrine conditions also include hyperthyroidism (an overactive thyroid), which may include symptoms such as:

  • weight and muscle loss
  • increased appetite
  • diarrhoea
  • anxiety
  • heat intolerance
  • tremor

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research suggests that people with Williams syndrome have a higher prevalence of hypothyroidism, and approximately 75% experience underdevelopment of the thyroid gland (Selicorni and others, 2006).

Supporting sources are as follows:

Musculoskeletal conditions 

Musculoskeletal conditions are commonly seen in people with Down syndrome due to a range of reasons, including:

  • low muscle tone
  • craniovertebral instability
  • cervical spine instability
  • lax ligaments
  • hypermobile joints
  • susceptibility to childhood arthritis

This can cause pain and lead to issues with posture and mobility, such as flat foot and neck instability, which may require support from a multidisciplinary team (for example, physiotherapy, occupational therapy and orthotic services).

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Musculoskeletal conditions are commonly seen in people with Williams syndrome due to low muscle tone, lax ligaments and hypermobile joints. This can cause pain and lead to issues with posture and mobility, such as scoliosis.

Supporting sources are as follows:

Immune function

People with Down syndrome may experience an increased risk of infection, and these infections can be more difficult to treat. It is important that people with Down syndrome are up to date with all necessary vaccines and have access to acute and emergency healthcare. People with Down syndrome also have a higher prevalence of certain autoimmune disorders, such as thyroid disease, type 1 diabetes and coeliac disease.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, some research suggests that prevalence of coeliac disease is higher among people with Williams syndrome than the general population.

Supporting sources are as follows:

Hearing issues

Hearing difficulties are extremely common in people with Down syndrome. This can have a major impact on the development of speech, language, behaviour and social skills. Difficulties include:

  • conductive hearing loss due to glue ear, which is more common in children
  • age-related hearing loss, which occurs more frequently and at a younger age in people with Down syndrome than the wider population

The following academic papers and research support the needs identified:

Relevant DSMIG-led resources are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, studies have found that people with Williams syndrome also experience hearing difficulties. In a sample of 81 people with Williams syndrome aged between 5 and 60 years, 63% of the school-age and 92% of the adult participants had mild to moderately severe hearing loss (Marler and others, 2010).

Supporting sources are as follows:

Vision issues

There is a higher prevalence of sight issues among people with Down syndrome. Refractive errors - such as short-sightedness, long-sightedness and astigmatism - are more common at all ages. There is also an increased incidence of disorders, such as congenital cataracts, squint and glaucoma, in people with Down syndrome, and higher rates of cataracts with ageing.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research suggests that people with a learning disability are at a greater risk of experiencing vision issues than the wider population. Furthermore, there is a higher prevalence of sight issues among people with Williams syndrome. Refractive errors - such as short-sightedness and astigmatism - are more common at all ages. There may also be an increased incidence of disorders such as a squint in people with Williams syndrome. 

Supporting sources are as follows:

Dental issues 

Dental anomalies are common in people with Down syndrome. 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.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need      

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, research has suggested that dental anomalies are common in people with Williams syndrome. This includes differences in the development and structure of teeth, which can lead to differences in oral and dental health. People with Williams syndrome may also be more prone to gum disease. 

Supporting sources are as follows:

Relevant DSMIG-led resources are as follows:

  • Down’s Syndrome Association and DSMIG. ‘Oral health care for children - health series.’ Ears, nose, throat and teeth. 2024 (viewed May 2025)

Cancers and blood disorders 

People with Down syndrome have a higher risk of developing blood disorders, including leukaemia (blood cancer). This is more common in children with transient leukaemia (TL), a unique ‘pre-leukaemia’ condition seen in 5% to 30% of newborns with Down syndrome (Tunstall and others, 2018).

People with Down syndrome also have a higher risk of developing certain solid tumours - for example, prevalence of testicular cancer has been estimated to be higher among people with Down syndrome.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability, particularly regarding increased risk of blood disorders and hypertension.

Supporting sources are as follows:

Dementia 

Alzheimer’s disease and symptoms of dementia affect adults with Down syndrome more frequently and at a younger age than the general population - the mean age being 55 years old (McCarron and others, 2017 and Mokrysz and others, 2017). This is known as young-onset dementia.

Some research estimates that the lifetime risk of people with Down syndrome developing dementia is estimated to be around 9 in 10 (Strydom and others, 2018). Typical signs may include:

  • changes in personality and behaviour
  • loss of short-term memory
  • seizures

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Though some studies indicate that dementia is less common than in people with Down syndrome, increased rates for dementia have also been found in other elderly people with intellectual disability in the UK.

Dementia prevalence was estimated to be approximately 13% among people with intellectual disabilities aged 60 and older, and 18% among those aged 65 and older (Strydom, Dodd, Uchendu and Wilson, 2020).

Supporting sources are as follows:

Feeding, diet, weight gain and growth

People with Down syndrome may experience challenges with growth, such as faltering growth and short stature. There is also a high prevalence of being overweight and of obesity among people with Down syndrome. This can be due to both environmental and biological factors, such as:

  • thyroid disorders
  • slower metabolism
  • lack of accessible information on nutrition and diet
  • lack of access to physical activity

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, some research suggests that children with Williams syndrome may exhibit food refusal behaviours, which can impact their ability to achieve a healthy diet.

Supporting sources are as follows:

Sleep

Many people with Down syndrome have challenges sleeping. Common sleep disorders include:

  • difficulty settling
  • frequent night waking
  • parasomnias

Sleep issues may be a result of behavioural issues (bedtime routines) or sleep-related breathing disorders (also known as sleep apnoea). Sleep apnoea occurs when the airways become partly blocked during sleep, making breathing more difficult. This can have a long-term effect on growth and health.

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Many children and adults with Williams syndrome have challenges sleeping. Common sleep disorders include difficulty settling and frequent night waking.

Supporting sources are as follows:

Relevant DSMIG webpages are as follows:

Mental health and wellbeing

Mental health disorders are reported to be more prevalent in adults with Down syndrome than those in the wider population. Some of the most common mental health conditions seen in people with Down syndrome include depression and obsessive-compulsive disorders (OCD).

Typical features of depression in people with Down syndrome include:

  • sleep disturbance
  • weight loss
  • tiredness

Typical features of OCD include:

  • ordering
  • ritualistic touching
  • opening and/or closing doors
  • cleaning

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Some research suggests that mental health issues are particularly pronounced for people with other conditions.

For example, anxious, agitated and/or aggressive behaviours were reported in more than one-third of people with Pitt-Hopkins syndrome.

A recent meta-analysis of anxiety in Williams syndrome determined that 48% of people with Williams syndrome meet criteria for at least one anxiety disorder (Royston, Howlin, Waite and Oliver, 2017).

Supporting sources are as follows:

Co-occurring conditions

Research presents a range of statistics on the prevalence of co-occurring diagnoses for people with Down syndrome. This includes conditions such as autism and attention deficit hyperactivity disorder (ADHD). For example, studies have reported that roughly 13% of children with Down syndrome are also autistic (Spinazzi and others, 2023).

Furthermore, people with Down syndrome, who are also autistic, were more likely to be male and had higher odds of a current or prior diagnosis of:

  • constipation
  • gastroesophageal reflux
  • behavioural feeding difficulties
  • infantile spasms
  • scoliosis

The following academic papers and research support the needs identified:

Relevant DSMIG webpages are as follows:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research has suggested that ASD and ADHD prevalence varied between genetic syndromes but was found to be consistently more likely to be prevalent than in the general population.

Supporting sources are as follows:

Down syndrome regression syndrome

Down syndrome regression syndrome (formerly known as Down syndrome disintegrative disorder) is a concerning complication in some young people with Down syndrome with an uncertain cause. The syndrome can cause people to experience an unexplained regression in their daily lives, such as:

  • their abilities to communicate
  • their sleep quality
  • changes to their personality and behaviour

This is a very rare but serious condition.

To note, as this syndrome is specific to Down syndrome, conditions with overlapping need are not reported below.

The following academic papers and research support the needs identified:

Developmental needs of people with Down syndrome

This section sets out peer-reviewed journals submitted by experts on the topics of developmental needs for people with Down syndrome. Children with Down syndrome vary widely in their development. Most have mild or moderate intellectual disabilities, but some have more significant delays and complex needs (DSMIG, 2024).

Many of these needs are encapsulated by the ‘behavioural phenotype’ (in other words, typical characteristics) for people with Down syndrome. This includes:

  • individual differences in emotional functioning
  • relative strengths in some aspects of visual processing, receptive language and non-verbal social functioning
  • relative weaknesses in gross motor skills and expressive language skills

Evidence on the Down syndrome behavioural phenotype is detailed below:

To note, as this phenotype is specific to Down syndrome, conditions with overlapping need are not reported.

Cognitive development 

Research suggests that cognitive development varies between people with Down syndrome but is typically impaired, stemming from a difficulty to develop:

  • automatic processing
  • executive function
  • memory consolidation

However, some studies suggest that joint attention (purposefully co-ordinating the focus of attention with that of another person) may be a relative strength for those with Down syndrome.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Some research suggests that other conditions, including Williams syndrome and fragile X syndrome, can affect attentional abilities and executive function. Such research has suggested that the Williams syndrome cognitive profile is typified by a disparity between relatively strong linguistic ability and poor visuospatial ability.

Supporting sources are as follows:

Sensory issues

People with Down syndrome may have difficulties with sensory processing, such as:

  • hypersensitivity to noise and touch
  • seeking out sensory stimulation
  • engaging in repetitive behaviours

Children with sensory processing challenges may experience:

  • reduced participation in activities of daily living
  • impaired self-esteem
  • increased levels of anxiety
  • increased levels of frustration
  • difficulties with self-regulation
  • reduced involvement in sensory experiences

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, including through survey responses and stakeholder engagement sessions.

Short-term auditory working memory 

People with Down syndrome may have an impaired working memory, which includes difficulty storing and processing verbal information such as:

  • sequences
  • instructions
  • new vocabulary or information

This includes challenges with maintaining attention, and retaining and consolidating learning into long-term memory, which has implications for education.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. People with Williams syndrome may have an impaired working memory, which includes difficulty storing and processing verbal information such as:

  • sequences
  • instructions
  • new vocabulary or information

Supporting sources are as follows:

Speech, language and communication  

Children and adults with Down syndrome can experience difficulties with:

  • using and processing spoken language
  • stammers and unclear speech fluency, often due to anatomical differences in the oral cavity, reduced muscle tone and motor planning difficulties
  • limited receptive and expressive vocabulary
  • grammar and sentence structure

This can lead to people with Down syndrome understanding more than they can express, leading to their knowledge being underestimated. Learning from listening can be difficult, but visual and spatial processing and memory have been found to be relative strengths.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. The development of speech and language is also affected for people with other conditions and can be affected by a range of genetic and environmental factors. The presentation of language ability may also vary across conditions. For example, research suggests that children with Williams syndrome can have difficulties using and processing spoken language.

Supporting sources are as follows:

Delays in development of fine and gross motor skills 

Children with Down syndrome may have delays in the development of fine and gross motor skills.

Gross motor skills refer to skills involving large muscle movements, which are used for activities such as sitting, walking or running, while fine motor skills involve the use of smaller muscles for activities such as writing, drawing and object manipulation.

Delays across these areas can affect:

  • self-care skills
  • handwriting ability
  • agility
  • participation in physical activities

People may experience difficulty focusing and multitasking, as well as tiring easily.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Differences between children with different syndromes are potentially driven by unique causes attributable to each disorder. For example, children with Williams syndrome may experience challenges with:

  • handwriting ability
  • agility
  • participation in physical activities

Supporting sources are as follows:

Social development 

Social development and social learning can be considered a strength, with most children with Down syndrome enjoying and learning from social interaction with others. Both children and adults with Down syndrome have strengths in social and emotional understanding, and many develop age-appropriate behaviour.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research looking at developmental disabilities has found that higher-quality mother-child interaction was predictive of more positive school-based adaptive functioning, which facilitates meaningful participation at school and college.

Supporting sources are as follows:

Challenging behaviour

Research has suggested that several characteristics associated with the Down syndrome behavioural phenotype, in addition to biological factors, may increase the presence of challenging behaviour in people with Down syndrome.

This can be an issue for some, but not all children, and is influenced by management styles at home and at school and college. Unless properly supported, this challenging behaviour can impact:

  • social and academic development
  • access to community, leisure and educational settings

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Educational needs of people with Down syndrome

This section sets out peer-reviewed journals submitted by experts on the topics of educational needs for people with Down syndrome. The educational profile is an uneven profile, featuring strengths and weaknesses that will vary between people. This section details some of the support needs and challenges that people with Down syndrome may experience.

Visual learning skills and difficulties

Children and young people with Down syndrome may have strengths in visual learning. This includes the ability to:

  • learn and use signs and gestures
  • learn to read
  • use the ‘written word’

They may also have strengths in learning through imitation, and from modelling and demonstration.

However, people with Down syndrome may also experience visual impairments that impact their visual learning skills. For example, they may struggle with:

  • visual focus
  • writing using a pencil on blue-lined paper
  • reading small font
  • coping with text, diagrams or pictures that are too cluttered, detailed or have low contrast

Conditions with overlapping need

There was no reference to visual learning skills during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability.

Literacy

Literacy and reading ability are thought to be relative strengths in people with Down syndrome in relation to their language and cognitive development. However, literacy ability may be impacted by visual impairments, such as difficulty reading small fonts.

Where there is strength in literacy, this should be capitalised upon to support development with spoken language.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. For example, some research suggests that reading ability is varied among people with Williams syndrome. In one study, higher reading ability was found to be associated with increased outcomes in adaptive functioning (such as written and expressive communication skills, as well as community living skills).

Supporting sources are as follows:

Numeracy

While there is individual variation in overall ability, numeracy skills are recognised as a relative weakness for children and adolescents with Down syndrome. It has been theorised that issues with counting could stem from deficits in short-term memory and expressive language associated with Down syndrome.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Some research suggests that both people with Down syndrome and those with Williams syndrome may experience reduced mathematical ability.

Supporting sources are as follows:

Impact of hearing loss on education  

Many children with Down syndrome have hearing loss, which can be temporary or permanent. This means that they may face challenges such as difficulties:

  • listening to whole-class input
  • listening in noisy environments
  • processing spoken language
  • discriminating speech sounds
  • learning phonics

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Education settings, social inclusion and participation  

Some research suggests that children with Down syndrome develop better spoken language and make better academic progress, particularly with reading, when taught in fully inclusive classrooms with typically developing peers of the same age. There are also potential benefits in development of socialising skills and getting full access to the academic curriculum.

However, education provision is likely to be highly varied across the UK and may determine the benefits experienced on a person-by-person basis.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research has explored the specific and general difficulties that parents of children with neurodevelopmental disorders experience involving their child’s educational provision. Some research suggests that children with Williams syndrome may face challenges in accessing mainstream education settings and often require individualised one-to-one support.

Supporting sources are as follows:

Higher education and employment

People with Down syndrome are likely to need support to access further education and/or employment opportunities. Employment should be an expected outcome for many people with Down syndrome and high on the agenda for schools and colleges.

Barriers to inclusion in further education need to be removed to make transition to adult life and employment possible. This includes:

  • teachers having high and clear expectations of pupils with Down syndrome
  • pupils should have support in place for them to achieve qualifications that are prerequisites for specific courses or employment opportunities

For example, access to a work placement may give a person valuable experience in deciding if that type of work suits them. Some people with Down syndrome may benefit from residential experiences at local colleges, while others may prefer to study at college and live elsewhere.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research has suggested that inclusive practices in higher education settings can have lasting positive impacts on personal, social and academic outcomes for people with a learning disability.

Supporting sources are as follows:

Social care needs of people with Down syndrome

This section sets out peer-reviewed journals submitted by experts on the topics of social care needs for people with Down syndrome.

Domestic care needs 

People with Down syndrome are likely to need support with various aspects of domestic management. This may include assistance with:

  • cleaning
  • food preparation
  • laundry
  • shopping
  • maintaining property

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability, such as Williams syndrome.

Supporting sources are as follows:

Personal care needs

People with Down syndrome are likely to need support with different aspects of personal care, such as:

  • maintaining personal hygiene
  • choosing appropriate clothing

Personal assistants can be helpful to support with these needs, providing guidance on healthy eating as well as self-care.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Access to and engagement with health, leisure and social activities

People with Down syndrome are likely to need support to plan and take part in health, leisure and social activities.

Participating in a variety of activities suited to the person’s individual needs, hobbies and aspirations is beneficial for health and overall wellbeing. Participation in the local community can also provide benefits, such as a sense of fulfilment and personal value, as well as contributing to the greater good.

Activities could include exercise, indoor and outdoor activities and social outings. High-quality day opportunities, such as classes and clubs, may also help build skills and promote independence.

Access could be provided through:

  • local support groups
  • supervised activities
  • volunteering
  • opportunities for inclusion in activities with people who do not have Down syndrome

People with Down syndrome may also need support with making and maintaining social relationships. This may include support:

  • organising and attending activities with family and friends
  • arranging trips and holidays
  • navigating romantic relationships

People with Down syndrome may also benefit from social skills training and guidance on safe contact with others, including the ‘right to respect’ from others. Maintaining close connections with family and friends can reduce feelings of social isolation and has a positive impact on overall wellbeing.

The following academic papers and research support the needs identified:       

Conditions with overlapping need

This need was also reported for people with intellectual and developmental disabilities, which can contribute towards more emotional-behavioural and health challenges.

Supporting sources are as follows:

Healthcare support

People with Down syndrome are likely to need support with different aspects of managing their individual healthcare needs. Active assistance could be required with:

  • taking medication
  • arranging and attending medical appointments
  • mobility support

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Administrative support

People with Down syndrome are likely to need support with day-to-day administrative tasks. This may include help with:

  • daily planning
  • time management
  • financial management, such as paying bills, filling out forms and budgeting

Support could include help to understand and manage benefits and financial entitlements, such as direct payments. Guidance on how to use technology effectively can also be provided to make these tasks easier.

Support may also be needed to help navigate the social care system - for example, the provision of clear, proactive and accessible information on what social care they are entitled to and how to access it. People with Down syndrome may also be entitled to provision of an advocate to assist with comprehension of information relevant to their social care, under the Care Act 2014.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Personal safety needs

People with Down syndrome are likely to need support to stay safe from potential exploitation, harm, abuse or neglect. This may include guidance on:

  • road safety
  • online safety (for example, social media use)
  • when, and how, to raise concerns with partners or ask for help
  • how to put safeguarding measures in place

Some people with Down syndrome may also require support when experiencing a crisis that involves contact with the criminal justice system.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Early years and family systems

Families and/or carers of people with Down syndrome face unique challenges due to the ongoing health and developmental concerns associated with Down syndrome. The family environment that a child grows up in can directly influence their quality of life, and so it is essential to provide the right support for both the family and the child as early as possible.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Preparation for adulthood and support with transitions

The move between child and adult services is likely to be a phased transition between the ages of 16 and 18, although different services may have different age limits. Support will be required to prepare for this transition, including:

  • the move between child and adult health and social care services
  • plans for further education and employment

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Studies have suggested that the transition from school and college to adult roles can be a particularly difficult time for people with an intellectual difficulty. A number of factors may complicate this period including:

  • the capacity of the young adult to adapt and change to life in adulthood
  • their difficulty navigating services and programmes
  • issues and challenges around the young person building connectedness
  • strain on family wellbeing and finances
  • concerns about the longer-term future

Some research looking at the experiences of people with intellectual disabilities found that the following are all required to promote successful transitions as people age, and avoid unwanted or inappropriate transitions at points of crisis:

  • consistent social work support
  • skilled staff
  • suitable accommodation
  • creative engagement with people with Down syndrome and families and/or carers to plan ahead
  • timely access to good-quality healthcare

Supporting sources are as follows:

Ageing

As people with Down syndrome live increasingly longer lives, issues may arise concerning:

  • ageing-related health challenges
  • where they will live
  • who will be responsible for their care

Proactive, long-term social care planning can help accommodate long-term and short-term needs at different life stages. Taking a lifetime approach to social care planning can help maintain consistency and anticipate changes in needs. It also helps ensure that care provision is age appropriate and suited to the person.

The following academic papers and research support the needs identified:

Conditions with overlapping need

This need was also reported for people with other chromosomal conditions, genetic conditions and/or a learning disability. Research suggests that people with other chromosomal conditions, genetic conditions and/or a learning disability may also experience challenges with regards to their care provision and changing health needs as they age.

Supporting sources are as follows:

Travel support

People with Down syndrome are likely to need support with their travel arrangements - for example, to attend college, appointments or their workplace. Full travel support may be required, either on foot or using private and public transport facilities. Alternatively, training, such as road safety advice, may be provided to support people with Down syndrome to become independent travellers.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Respite care

Respite care, or short breaks, may be required for the families and/or carers of people with Down syndrome. This could include overnight or short stays in social care accommodation, as well as daytime care for people with Down syndrome. Short breaks can also provide people with Down syndrome the opportunity to try different experiences, make friends and have a break from the people they usually live with.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Additional and specific therapies or services

People with Down syndrome are likely to need support to access information on and attend additional or specialist care services. This may include specialist dementia care and local Down syndrome-specific activities and support groups.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Housing needs of people with Down syndrome

This section sets out peer-reviewed journals submitted by experts on the topics of housing needs for people with Down syndrome.

Choice and control over accommodation 

People with Down syndrome should have a choice over what type of accommodation they live in and whether they live alone or with other people. Options may include:

  • supported living
  • residential care
  • a ‘Shared Lives’ scheme
  • living in the family home with support

People with Down syndrome may choose to live with friends, family, their partner or with others with similar needs.

Relevant bodies, such as local authorities, have a responsibility to care for and find housing solutions for people with Down syndrome in their local area. People with Down syndrome and their families and/or carers may benefit from accessible information on:

  • housing rights
  • the different types of properties people can live in
  • how to access and fund services

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Good-quality housing 

People with Down syndrome must have access to good-quality and suitable homes that meet their personal, health, care and all-round housing needs. This includes housing that is easily accessible and can be adapted to their needs. For example:

  • housing with stair rails
  • housing with bigger bathrooms
  • housing with on-call systems
  • ground-floor accommodation

People with Down syndrome should have access to accommodation that is in close proximity to their family, work and social life, as well as amenities such as shops, libraries and bus stops.

This need was reported during the call for evidence for people with Down syndrome, which includes survey responses and stakeholder engagement sessions.

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Support to live independently 

The needs of people with Down syndrome will vary and the level of care needed to live in their chosen accommodation will depend on the person. For example, some people may need support in all aspects of daily living or specialist services, such as dementia care, while others may need minimal support.

A needs assessment under the Care Act 2014 may be required before moving to a different type of accommodation. People may be eligible for care and support to meet assessed needs, and the support offered will be based on the assessed need. Care and support can be provided by staff:

  • based in registered settings
  • employed by a registered agency
  • directly employed by the person themselves (often referred to as ‘personal assistants’)

The following legislation and research supports the needs identified:

Conditions with overlapping need

This need was reported during the call for evidence for people with other chromosomal conditions, genetic conditions and/or a learning disability, which includes survey responses and stakeholder engagement sessions.

Annex A: approach to producing Down syndrome needs profile paper

Analytical approach and assurance

All of the needs in this paper have been identified from either the findings of the Down Syndrome Act 2022: call for evidence or subsequent engagement with stakeholder experts.

Call for evidence approach

The call for evidence was launched on 19 July 2022 and closed on 8 November 2022, and involved:

  • 2 versions of a survey - a main survey and an easy read version - which received 1,268 responses overall
  • 66 contributions directly to DHSC’s call for evidence mailbox
  • further contributions from a several stakeholder engagement sessions

This led to more than 1,500 total responses received.

Mailbox submissions and feedback from stakeholder engagement sessions were analysed and documents were categorised into types of evidence - for example, documents that contain referenced evidence, examples and quotes from people with lived experience, or internal analysis. All the evidence received has informed the development of the draft statutory guidance, which has been published alongside this paper as part of the Down Syndrome Act 2022 statutory guidance consultation. The content for this needs profile paper was developed by focusing on each document that contained references to peer-reviewed journal articles.

Referenced articles were assessed against the criteria for inclusion - further details can be found in the ‘Needs profile paper evidence: criteria for inclusion’ section below. The articles that met these criteria were then mapped to the needs identified from the call for evidence findings. It was recorded whether the journal discussed the needs of:

  • people with Down syndrome
  • people with other chromosomal conditions, genetic conditions and/or a learning disability

Subsequent engagement 

Following the completion of the call for evidence, relevant stakeholders were re-engaged (including medical and education professors, charities and experts by lived experience). They were asked to:

  • review the work
  • provide any additional evidence that they felt had been missed during the call for evidence
  • highlight any obvious errors in classification of needs or in the descriptions used for each need

Their feedback was incorporated where the evidence submitted met the existing criteria for inclusion, ensuring the paper retained its existing structure in order to mirror the structure of the guidance. 

Important caveats

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

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

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

This paper has been published alongside the draft Down Syndrome Act 2022 statutory guidance for information. 

Needs profile paper evidence: criteria for inclusion

The following criteria had to be met for documents to qualify as supporting evidence for the needs identified in this paper:

  • document was submitted during the call for evidence time period, or through subsequent engagement with stakeholder experts
  • document contains identifiable references (for example, in footnotes or a bibliography)
  • references in document are to peer-reviewed journal articles
  • journal articles are accessible online (for example, articles are free to access or sufficient detail on the research was captured in the abstract)
  • journal articles are deemed to be from a reliable source (judgement based on if the article is from a reputable journal and has been cited by other papers)

If you would like to review the draft statutory guidance in full, you are invited to respond to the Down Syndrome 2022 statutory guidance consultation.

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