Open consultation

Annex: resources and examples of good practice

Published 5 November 2025

Applies to England

The resources and case studies detailed in this annex are not final - they are being consulted on alongside the Down Syndrome Act 2022 draft statutory guidance.

The aim of this annex is to provide professionals working with or commissioning services for people with Down syndrome with:

• additional resources to support good practice (alongside the government publications listed in the guidance)
• illustrative case studies that have reported positive outcomes
• other materials and support available, which professionals can signpost to parents, families and carers of people with Down syndrome

Note that some case studies have been anonymised.

Accessible and person-centred services

Effective communication and sharing

The following organisations provide resources for professionals to support good practice in inclusive communication.

Mencap has guidance on communicating with people with a learning disability, which can include people with Down syndrome, setting out good practice for communication standards, active support and co-production.

The Down Syndrome Clinical Excellence Network has produced guidance on Down syndrome-specific considerations for speech and language therapists who are working with children and adults who have Down syndrome.

Think Local Act Personal (TLAP) hosts a Language hub that includes a ‘jargon buster’ explaining health and care terms in plain English, as well as guides on communicating important topics and understanding why correct and person-centred language matters.

Case study: inclusive communication at the Include Choir

The Include.org model of experiential communication training uses and teaches inclusive communication skills for people with a learning disability and their support staff within activity-based learning.

For example, at the Include Choir, the mental and physical benefits of social inclusion and group singing combine with learning and using Makaton, visual supports and easy read. This has:

• upskilled and built communication skills in the social care staff who attend
• enabled people with Down syndrome to fully engage, build confidence and take the lead

Reasonable adjustments

The Department for Education’s (DfE) Education Hub blog provides information for parents, pupils and education professionals about the education system, including information on reasonable adjustments and how they can help pupils with special educational needs and disabilities (SEND) at school.

A Down’s Syndrome Association (DSA) resource covers the rights of people with Down syndrome under the Equality Act 2010, including requirements on schools to:

• produce an accessibility plan
• make reasonable adjustments for children and young people with Down syndrome where necessary

Disability Rights UK describes how reasonable adjustments can be provided for students with disabilities.

NHS England has published guidance on Health and care passports for patients.

Case study: the role of patient passports in meeting communication needs

Staff at Leighton Hospital (part of Mid Cheshire Hospitals NHS Foundation Trust) have undergone training led by their privacy and dignity matron to help ease the anxiety of some patients.

This includes the introduction of patient passports, which highlight patients’ communication needs, such as how to:

• reduce their anxiety
• recognise they are in pain
• involve and access their carers and family

Health

Health needs of people with Down syndrome

Down Syndrome UK (DSUK) has a range of resources for health professionals, including resources for health visitors and information on cardiac conditions, infections, constipation and eye care.

The Down Syndrome Medical Interest Group (DSMIG) provides a range of online resources for healthcare professionals to support high-quality, evidence-based care for people with Down syndrome. This includes guidance for essential medical surveillance on the identification of:

• cardiac disease
• thyroid dysfunction
• hearing and vision disorders
• growth monitoring
• cervical spine instability

DSA’s DSActive DSEngage project is a resource for parents, families and carers that aims to improve the physical and mental health of people who have Down syndrome by providing:

• regular online services for people who have Down syndrome
• accessible information on healthy eating and physical activity
• training for leisure, recreational and sports providers

Collaborating with the UK Infantile Spasms Trust, DSUK provides parents with peer support and information to raise awareness of infantile spasms, which affect about 3% of children with Down syndrome.

DSMIG has also developed Best practice guidelines for the management of hearing issues in people with Down syndrome.

Case study: supporting children with heart conditions

DSUK supports parents whose child is undergoing heart surgery through its initiative Heart Buddies, providing emotional and practical advice and support, together with Lived experience insights on heart surgery.

A parent said:

Having a PADS Heart Buddy made an extremely stressful situation a little less daunting. We connected before our son was due to have surgery and they had so many practical tips about what to expect.

Speaking with someone who has been through the same made a huge difference - we can’t thank our Heart Buddy enough.

Case study: holistic care under a community team

Surrey and Borders Partnership NHS Foundation Trust offers various community-based learning disability services, including a full baseline assessment. This is offered to people with Down syndrome when they turn 30 years old and includes neuropsychological and functioning assessments. A report is produced and a number of resources are offered including:

• an early signs of dementia checklist
• basic awareness training
• a personalised brain plan, which includes information on health, exercise and why and how it is important to keep your brain healthy
• advice on sleep

These assessments cover day services, paid staff and family carers, ensuring there is a timely response to any concerns raised about changes in a person’s functioning.

The pathway extends to post-diagnostic support where the person with Down syndrome is never discharged. The person, their family and all staff are involved in ongoing reviews and receive specialist health support and advice, including end-of-life planning.

Service design, system planning and leadership

DSMIG provides examples of local service provision and commissioning guidance that includes:

• pathways of care for people with Down syndrome
• comprehensive schedules of health checks
• guidance on management of aspects of healthcare in Down syndrome

The examples published are intended to help other organisations in the development of their own guidelines.

DSA offers tailored training for integrated care boards and the healthcare workforce on, for example, health and health equality, ageing and dementia.

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

NHS England provides information about co-production and how to do it.

TLAP also provides resources on co-production. 

Down Syndrome International’s Listen Include Respect international guidelines for inclusion participation are tools that explain how organisations should include people with intellectual disabilities in different parts of their work. (Note that these guidelines use the term ‘intellectual disability’ instead of ‘learning disability’ as the former is more commonly used internationally.)

Reducing inequalities

The Learning disability improvement standards for NHS trusts help trusts to measure the quality of care they are providing to people with a learning disability and/or autistic people, which can include those with Down syndrome.

The standards support all NHS trusts to measure the services they provide to people with a learning disability against a range of different metrics, which 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 where there are areas for improvement.

Neonatal and postnatal care

DSMIG has published best practice guidelines for the neonatal care of infants with Down syndrome.

St George’s University Hospital, DSUK and the Down Syndrome Research Foundation have created a Pathway for personalised antenatal care of pregnancies suspected or diagnosed with Down syndrome, which offers evidence-based guidance to obstetricians and midwives.

DSUK offers lived experience maternity training for healthcare practitioners, which reinforces the importance of:

• having a contemporary understanding of Down syndrome
• knowing how best to communicate with and support families

DSUK also hosts a variety of free monthly webinars for maternity care professionals specifically on supporting those with a baby with Down syndrome.

There are various breastfeeding resources available to new parents including:

• a DSUK guide for those parents wishing to breastfeed their baby with Down syndrome
• an online learning module from the Royal College of Midwives on breastfeeding a baby with Down syndrome (sign in required)

Both provide practical information and insight for parents wishing to breastfeed their baby with Down syndrome.   

Case study: support for expectant and new parents

DSUK provides ongoing comprehensive support to expectant and new parents through its Positive about Down syndrome (PADS) initiative, including:

• #NobodyToldMe: the truth about Down syndrome - a parent’s lived experience of being a mum to her son with Down syndrome
• the Little orange book of knowledge - a practical resource outlining the services that new and expectant parents should expect for their child with Down syndrome
• online PADS early development groups courses, which help parents, families and carers aid their child’s development by providing them with research-based early intervention activities to work on with their child

A parent said the following about their experience of PADS:

Thank you - it’s hard to comprehend how much PADS offers with such a small team. You have made our journey since pregnancy, through heart surgery and to where we are now so much smoother and more well informed than it might have been.

When we found out the likely Down syndrome diagnosis early in pregnancy, I was frantically googling and searching to try and find something like PADS. And then I found you, and you are everything we need.​

Another parent said:

Late on in my pregnancy, I attended an online session with PADS on breastfeeding, Sarah ran the session and shared true information on how it is possible but may need to use different positions.

I was filled with hope hearing of other mums and their success stories, and am now 10 months into breastfeeding my daughter, thanks to the support and confidence from PADS.

Universal support for families

The Barnet Unified Document for Down Syndrome (BUDDS) integrated care pathway for children and young people with Down syndrome was developed in partnership with parents, carers, health professionals and those living with Down syndrome.

The pathway supports children and young people with Down syndrome to navigate the services available in health, care and education. This covers pathways from neonatal, early years and school age through to adulthood.

Case study: toilet training a child with Down syndrome

DSUK offers comprehensive downloadable resources and support for parents through its Pants4School programme on toilet training children with Down syndrome.

In conjunction with Bladder & Bowel UK, DSUK has published - on the same page - best practice guidelines for professionals, supporting skill development for toilet training in all children, including those with learning disabilities and developmental differences.

A parent said:

Patrick has started school today in pants and it is totally due to the support that we have had from DSUK. We wouldn’t have known where to start without the Pants4School programme. It gave us the specialist evidence to back up what we trying to achieve with Patrick’s nursery who have also been really patient.

It gave us all the confidence to keep persevering and, after 11 months, he started to self-initiate toileting.

General practice and annual health checks

Below is an example of good practice when it comes to annual health checks.

Case study: importance of annual health checks in keeping healthy

This video about Charlotte’s annual health check and health action plan shows how effective annual health checks and action plans help people with Down syndrome to stay healthy.

Speech and language

DSUK delivers Down syndrome-specific training for speech and language therapists working with children and young people with Down syndrome. Further information and links to upcoming training can be found in the DSUK blog post: An overview of the speech, language and communication profile associated with Down syndrome.

Down Syndrome Education International has supported the development of speech and language paediatric guidelines including:

• the Down syndrome toolkit for paediatric speech and language therapists, which was developed by speech and language therapists at Lancashire and South Cumbria NHS Foundation Trust
• an evidence-based teaching programme, the reading and language intervention for children with Down syndrome, which is designed to improve reading and language outcomes for children with Down syndrome aged 5 to 11 years

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

People with Down syndrome will need support as their health deteriorates - for example, due to a greatly increased risk of developing dementia as they age.

Case study: managing deterioration

Developed by organisations across the Midlands, the Learning from lives and deaths (LeDeR) Managing Deterioration Programme, ‘Good Health, Good Lives’ for people with a learning disability, which can include those with Down syndrome, is designed to help social care staff to:

• identify the signs that someone with a learning disability is deteriorating
• work with NHS staff to get the person the care they need in this situation

Social care

The Local Government Association (LGA) has published a number of case studies about improving support for people with a learning disability and autistic people, which can include those with Down syndrome.

Person-centred care and support plans

DSA provides free resources and training for social care professionals, including:

• guidance on preparing for children’s and adults’ social care needs assessments and carers’ assessments
• getting the carer’s support plan right
• person-centred support planning

To support the completion of person-centred care and support plans for disabled people, including people with Down syndrome, TLAP has developed a Delivering care and support planning guide for councils to show what being person centred and Care Act compliant looks like in practice.

Preventative care and support for adults with Down syndrome

Below is an example of good practice when it comes to preventative care and support.

Case study: the importance of support networks

Sheffield is one council working with the charity KeyRing, using individual service funds to deliver a network (the Living Support Network) approach to supporting people with learning disabilities, which may include those with Down syndrome.

Each Living Support Network aims to encourage mutual support by members and a volunteer helps each member to realise their full potential by using their talents to the full. Evidence has shown that the networks are cost-effective, substituting for more expensive services and reducing calls on others.

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

LGA has published guidance on Preparing for adulthood: young people with a learning disability and autistic young people, including young people with Down syndrome.

Case study: strong workforce relations

One council has strong working relationships between children’s and adults’ social workers. All children’s workers are educated in the Care Act, so that they are aware of the goals and ambitions of adult social care. This aims to:

• reduce the interface between differing approaches in children’s and adults’ care as much as possible
• better prepare young people for transition to adulthood and adjustments in their care

​Dedicated transition social workers work alongside children’s social workers to help prepare young people and their family for how their care may change as they get older. This:

• reduces siloed working
• gives adult social care visibility on the needs of young people for service planning

Case study: multidisciplinary meetings

Another council uses regular multidisciplinary meetings to discuss the young people in its area who are approaching adulthood. Multidisciplinary attendance meetings ensure that:

• children supported across all settings are considered for adult social care referral
• referrals already made have been picked up by adult social care

Case study: using data to support early intervention

A third council works with children’s care to look at data on the current needs and costs of care among young people in its area who are likely to require adult social care support.

This data is used to prioritise and allocate transition social workers to young people with the highest needs who would benefit the most from early adult social care intervention.

Support for older people with Down syndrome

The National Institute for Health and Care Excellence (NICE) has published a guideline [NG96] Care and support for people growing older with learning disabilities, which sets out a number of quality statements that are relevant to older adults with Down syndrome. The NICE recommendations state that people growing older with a learning disability should:

• be actively involved when their care and support needs are being assessed
• have a named lead practitioner
• be involved in developing a plan for the future and reviewing it at least annually
• have an annual health check, which is used to update their health action plan
• meet hospital staff before any planned hospital admission to agree arrangements that make the stay easier for them

Co-operation, partnership and integration between health and social care services

There are a number of examples of good practice when it comes to integrated working, as follows.

Case studies: good practice in strategic partnerships

Humber and North Yorkshire integrated care partnership (ICP) meetings are structured to ensure a broad range of partners can contribute to developing and improving their health and care system. The meetings have been carefully designed to balance the ‘here and now’ priorities with the ‘strategic’ priorities across the system. The ICP meetings take place quarterly, for a whole day, and in person.

Further information on these case studies and other examples of good practice in ICPs can be found in LGA and the NHS Confederation’s Integrated care partnerships: driving the future vision for health and care report.

Case study: intensive support teams

Southwark’s adult learning disability social work team works closely with colleagues in Southwark’s Intensive Support Team (IST) to facilitate moves and stabilise placements for service users with mental health problems and learning disabilities who may have emotional, behavioural and social, communication or physical difficulties. This includes:

• transition planning
• providing placement funding
• the monitoring and review of placements and their effectiveness, alongside service users and their families

Southwark’s IST is a multidisciplinary team between:

• South London and Maudsley NHS Foundation Trust
• Guy’s and St Thomas’ NHS Foundation Trust
• Southwark Council

The team is able to provide flexible and intensive support for people with complex needs and challenging behaviour to meet their needs in the community. They use a positive behaviour framework to proactively work with a person’s behaviours that challenge, alongside the support provider.

Education

Effective education provision and SEND local offers for children and young people with Down syndrome

Down Syndrome International has published International guidelines for the education of learners with Down syndrome, which provide guidance on how to put in place inclusive practices within education settings. 

DSA has produced a comprehensive timeline document on Planning for adulthood and transition for people with Down syndrome and their families and carers, which:

• sets out the main transition points across education, health, social care and more
• provides useful resources relating to further education, changes in benefits, mental capacity, employment options and how to move from children’s to adults’ services in health and social care

Oxfordshire County Council has published a SEND toolkit for children with Down syndrome for schools in their local area. This includes a learning profile of children with Down syndrome to improve awareness and understanding among educators, as well as parents, of the factors that can facilitate or inhibit learning.

Case studies: experiences of children and young people with Down syndrome in education

DSA’s Our Voice network has conducted interviews that highlight the experiences of people with Down syndrome and what they like about school.

Down syndrome-specific training for education

The All Party Parliamentary Group on Down Syndrome has developed good practice guidelines for educational settings to enable educators to support children and young people with Down syndrome, covering the period from school entry (early years) through to further education. This includes guidance on Down syndrome-specific training for staff in schools, including:

• what training should cover
• frequency of training
• provision of specialist Down syndrome support services
• specific strategies to support learning and good practice across various educational settings

DSUK has extensive education programmes for professionals working with children with Down syndrome in early years settings and primary education. It provides accredited training courses, comprehensive information, resources and ongoing support. Online education provider Twinkl hosts monthly webinars in conjunction with DSUK for professionals working with pupils with Down syndrome.

Down Syndrome Education International provides teacher and early years training on supporting children with Down syndrome, while DSA provides free training for educators at all levels that is specific to learners with Down syndrome.

DSUK offers schools an individualised behaviour support service that aims to help them understand difficulties associated with Down syndrome that can lead to challenging behaviour and promote positive behaviour in the classroom.

Further education and initial teacher training

Through the Taking Teaching Further programme, the government is supporting the recruitment of experienced business and industry professionals to retrain as further education teachers across 15 technical subjects or in the core skills that underpin good technical education, including SEND.

DfE is offering bursaries to trainees who are training pre-service (that is, before entering paid teaching employment) to teach high-priority subjects in the further education sector in England, including for those specialising in SEND teaching.

The following provider experienced success using the early career framework (ECF) to create its training programmes and courses.

Case study: the ECF and adaptive teaching

The Driver Youth Trust has worked with Teach First to embed knowledge and strategies into its ECF programmes, with a view to enabling new teachers to confidently support pupils with SEND to thrive while learning skills and strategies that benefit all learners. Read more in this Teach First blog post on how the ECF supports pupils with SEND.

Inclusion in mainstream education settings

DSA has developed education resources designed to help all educators and increase the positive experiences of children and young people with Down syndrome in mainstream education, including factsheets and information on:

• education, health and care (EHC) needs assessments and plans
• speech, language and communication
• supporting pupils with additional and/or complex needs
• transitions from early years to post-16 education, and further education for pupils with Down syndrome
• the current legal framework for young people age 16 and over with additional needs

Case study: mainstream education and social communication

A parent said:

My son is in year 10 of a mainstream secondary school. His difficulty in making and maintaining friendships has been totally ignored by the school, with the response being ‘We can’t make students be friends with someone’, which is a common response from schools along with ‘It’s not in our remit’.

My son has Down syndrome with associated speech and language disorder, and he needs support with everyday social communication, which he receives as part of his speech and language therapy provision within his EHC plan. This support does not go beyond the direct therapy he receives at school. I am told that my son runs around on his own during break times and has lunch with his teaching assistant or a passing teacher.

As part of the annual review process, in addition to a recent educational psychology report highlighting the need for more social communication and friendship support, the intervention ‘Circle of Friends’ was added to his EHC plan. This 8-week intervention was put in place by the school with student volunteers agreeing to take part. When questioned as to how this intervention would be continued and how my son’s friendships would be supported going forward, this was dismissed as the reported intervention had finished.

I feel it’s quite late in his school career to be supporting friendships and is something that should have been in place back in year 7. Although this school did run a successful week-long summer school for vulnerable students, my son was placed in a tutor group with no one he knew, despite there being a very large cohort of children from his primary school starting at the same time.

The parent runs the local Down syndrome support group and, having spoken to secondary school parents about friendships at school, recommends best practice should include:

• the parent of a child with Down syndrome
• placing students in tutor groups with established friends where possible
• an ongoing buddy or mentor scheme of willing older students
• an ongoing intervention like Circle of Friends with active follow-up social communication provision from a Down syndrome specialist speech and language therapist within the EHC plan

Case studies: inclusion support for mainstream schools

Portsmouth Down Syndrome Association’s Specialist School Advisory Service case studies demonstrate how, when staff have access to specialist training and support, students with Down syndrome can be successfully educated in mainstream schools alongside their peers, resulting in better outcomes not only for the students with Down syndrome but for the entire school community.

The association also provides education programmes from birth through to early adulthood.

EHC needs assessments and plans

DSUK has published resources for parents and carers of preschool and primary age children, including information on choosing the right educational setting. DSUK also provides support with applying for an EHC plan for a child with Down syndrome, including online support groups, and EHC plan drop-in and draft review services.

Relationships, sex and health education

DfE has produced a Teaching about relationships, sex and health teacher training module on supporting pupils with SEND.

DSA has published a set of resources to support the delivery of relationships and sex education including Let’s Talk about Relationships and Sex, a comprehensive training package specifically designed for the learning strengths and challenges of people with Down syndrome.

Employment

Supported internships and employment programmes

The National Development Team for Inclusion (NDTi) website includes Internships Work: resources for employers focused on supported internships, plus examples of stories about supported internships from young people, employers and local authorities.

Charity DFN Project SEARCH brings together local education providers, local authorities and supported employment partners to provide a supported internship programme for young people with a learning disability and/or autism, which may include those with Down syndrome. The programme is designed to equip young people with the skills, confidence and experience needed to secure long-term employment.

Employers can access personalised support through a range of Mencap programmes including Mencap Training Academy (supported internship provision) and bespoke supported employment programmes.

DSA’s WorkFit scheme matches employers and jobseekers who have Down syndrome, and WorkFit officers support jobseekers and employers at all stages of the process. A positive action: lawful steps that employers can take to support individuals with a disability help sheet supports employers in their recruitment process, including of workers with Down syndrome and other disabilities.

Case study: WorkFit supported internship

WorkFit candidate Lucy completed a supported internship in customer relations at East Riding of Yorkshire Council with support from WorkFit and East Riding College.

As Lucy was finishing college, both she and her mum thought a supported internship would be a good way to introduce her to work. Lucy’s mum contacted WorkFit, which provides a service to support all parties at each stage of the process. This support is ongoing for as long as it is needed by the candidate, their family and/or the employer.

WorkFit organised an initial meeting with Lucy, her mum and her new employer and provided bespoke training to give the council the confidence to welcome someone who has Down syndrome into their organisation. This included specific information regarding Lucy’s strengths and areas where she would require additional support.

During the internship, it became clear that Lucy was more effective during certain work hours and adjustments were made after discussions between all parties, including WorkFit, to ensure Lucy was able to thrive and grow at work.

She has now been employed at the council in a permanent, part-time role as a support assistant. The internship has brought huge benefits to Lucy whose self-esteem and confidence have grown, as well as for her employer who believes she has had a positive impact in the team.

Support for careers advisers and employers

Mencap offers a suite of employment support for people with Down syndrome, as well as support for employers. It has produced a series of employer fact sheets to help employers to:

• modify recruitment practices
• understand how to apply reasonable adjustments
• apply to Access to Work

Surrey Choices brings together a range of support services to help get disabled, autistic and neurodivergent people, including those with Down syndrome, into meaningful employment.

Employment as a goal of social care

NDTi has also created Preparing for adulthood: employment resources, aimed at local authorities and other providers, on supporting young people with SEND into employment.

Housing

Providing access to good-quality, suitable housing for people with Down syndrome

Below are some examples of good practice when it comes to housing provision.

Case study: highlighting the role of needs assessments in housing strategies

LGA has published a case study of a strategic assessment of the accommodation with support needs for people with a learning disability, autism and mental health conditions, with applicable learnings for supporting people with Down syndrome.

Case study: experiences of securing supported housing

The National Down Syndrome Policy Group has published a case study detailing Florence’s experiences of securing supported housing. 

Ensuring people with Down syndrome have choice and control over housing

LGA and the Association of Directors of Adult Social Services, as partners in care and health, have published a guide to inform councils about how to develop a housing with support pipeline for people with a learning disability and autistic people, which includes case studies from local councils.

Case study: supporting people with Down syndrome to explore housing options

A young person with Down syndrome said:

When I was a student at the Orpheus Centre college, we were taken on trips out to visit alumni students who were either living in shared or independent accommodation.

The students said they liked their houses and the areas they lived in, and they had jobs in the area too. We could ask them if they had friends or went to social activities. I found this really helpful. They told us about the support they had to go out and about, and keep the house clean.

Paying these visits while at residential college helped Orpheus students think about where they might live in the next chapter of their lives, encouraging questions about both the challenges and the benefits of moving into their own or shared place.

Providing accessible information on housing

Learning Disability England has published Where you want to live: a housing guide, in easy read format, to support people with learning disabilities, which can include those with Down syndrome, to understand the different options, plan and make housing decisions.

DSA provides lots of information about housing options for people with Down syndrome and their families, including their rights under the Care Act. Much of it is in easy read format.  

DSUK provides information and training about housing options, including the opportunity for people with Down syndrome to purchase a home with the support of the MySafeHome initiative.