Call for evidence outcome

Down Syndrome Act 2022 guidance: call for evidence - outcome

Updated 5 November 2025

Introduction

The Down Syndrome Act 2022 became law in April 2022. The aim of the act is to:

• improve access to services and improve the life outcomes of people with Down syndrome (also known as Down’s syndrome)
• raise understanding and awareness of the needs of people with Down syndrome
• ensure that health, social care, education, housing and other local authority services take account of the needs of people with Down syndrome when commissioning or providing services

The act requires the Secretary of State for Health and Social Care to publish guidance for relevant authorities (for example, NHS hospitals or local councils) on the steps it would be appropriate for those authorities to take to meet the needs of people with Down syndrome when carrying out some of their most important statutory functions. Once the final statutory guidance is published, these authorities are legally required to take the guidance into account when providing certain core services.

On 19 July 2022, the Department of Health and Social Care (DHSC) launched a national call for evidence to inform the development of the Down Syndrome Act guidance. The aim was to gain a better understanding of:

• the needs of people with Down syndrome
• to what extent those needs are met
• examples of best practice within health, social care, education, housing and other local authority services

DHSC also sought examples of other public services, such as employment services, which are meeting the needs of people with Down syndrome.

This call for evidence involved people with Down syndrome, their families and/or carers, professionals and organisations.

As committed to during the act’s passage through Parliament, DHSC also wanted to explore where the guidance could have wider benefit. Therefore, while the act is about supporting people with Down syndrome, the call for evidence also sought the views of individuals with other genetic conditions and/or a learning disability, and their families and carers, to understand whether the guidance could have wider applications too. The call for evidence remained open for 16 weeks.

This document provides a summary of the findings from the call for evidence.

A note on terminology

To be consistent with the terminology used in the Down Syndrome Act 2022, the term ‘Down syndrome’ is now used in all relevant DHSC publications. It is recognised that some people prefer to use ‘Down’s syndrome’.

Overview of the call for evidence

The call for evidence was launched on 19 July 2022 and closed on 8 November 2022. It 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.

This document summarises the main insights gathered across all channels during the call for evidence period. The call for evidence summary in this document involved a combination of quantitative analysis and coding of qualitative responses, alongside policy interpretation of the findings.

In this call for evidence, DHSC sought to hear from people with Down syndrome, and their families and/or carers, about their experiences of a range of public services. DHSC also sought to hear from:

• professionals who work in health, social care, education, housing and other local authority services
• organisations, charities and groups who represent and provide services for people with Down syndrome

In recognition of the commitment to consider the wider benefits of the guidance, DHSC also collated views of people with other genetic conditions and/or a learning disability. This document sets out more detail about who responded in the ‘Demographics: who responded to the call for evidence survey’ section below.

To ensure that contributions were received from as many people as possible, DHSC developed 2 versions of the call for evidence survey. These consisted of an online questionnaire (referred to as the main survey) and an easy read version of this questionnaire (referred to as the easy read survey).

Both surveys contained the same set of open and closed-ended questions - however, they differed in the language used to ask these questions. This was done to ensure that the call for evidence was as accessible to as many people as possible.

A British Sign Language (BSL) interpretation of the call for evidence questions was also made available.

The questions across both versions of the surveys were tailored according to the group of people responding, containing specific questions for:

• people with Down syndrome
• families and carers of people with Down syndrome
• professionals
• people with other genetic conditions and/or a learning disability

There are thousands of different genetic conditions and people living with these conditions vary in their needs. For the purposes of this call for evidence, when references are made to other genetic conditions, this refers to any other genetic condition where a person may have some similar needs to people with Down syndrome (for example, a syndrome with similar or overlapping sets of symptoms and/or a learning disability) and where they would require similar co-ordinated support of health, social care, education, housing and other local authority services.

To ensure a wide range of views were captured, contributions to the survey questions received by email were also accepted. Several online and in-person discussions with stakeholders were attended, which included individuals with lived experience and organisations providing support to people with Down syndrome and to those with other genetic conditions and/or a learning disability.

This document sets out the findings from:

• both versions of the survey
• the stakeholder engagement sessions
• the contributions received directly to DHSC’s call for evidence mailbox by email

A number of specific recommendations from stakeholders were also received throughout the call for evidence process. While these are not listed in their entirety in this document, they have been considered for the guidance.

The call for evidence sought the views and experiences of people and organisations regarding the support required to meet the needs of people with Down syndrome.

Questions in the surveys were structured around 4 topics, which were selected based on the specific areas referenced in the Down Syndrome Act. The 4 topics are as follows:

• health services
• adult social care
• housing
• education and children’s social care

DHSC also wanted to develop a greater understanding of the potential wider benefits of the guidance and sought views on general good practice in meeting the needs of people with Down syndrome. To do this, questions were included on whether people with other genetic conditions and/or a learning disability could benefit from the same services as people with Down syndrome, as well as questions about wider public services (other than health, social care, education, housing and other local authority services).

The findings from this call for evidence have informed the development of the draft statutory guidance, which is currently being consulted upon as part of the Down Syndrome Act 2022 draft statutory guidance consultation.

Who responded to the call for evidence survey

In total, there were 1,164 responses received to the main survey and 104 responses received to the easy read survey. A breakdown of who responded to the call for evidence can be found below.

Across both surveys, respondents were directed to 1 of 4 sets of questions, depending on the capacity they were responding in (as shown in Figures 1 and 2 below).

Respondents who stated that they were sharing their personal views and experiences or responding on behalf of someone else were asked follow-up questions to direct them to either the questions for people with Down syndrome or the questions for people with other genetic conditions and/or a learning disability. There was not an option in the survey for a respondent to state they were a carer or family member of an individual with other genetic conditions and/or a learning disability and therefore they may have responded through a different respondent category. All views were treated equally.

Throughout this summary, where ‘people or respondents with Down syndrome’ is used, this includes both of the following:

• individuals with Down syndrome who responded to the call for evidence
• individuals who responded to the call for evidence on behalf of someone with Down syndrome

Demographics

Note: in the following figures, some percentages may not sum to 100% due to rounding.

Numbers and types of respondents

Figure 1: main survey respondents

Total respondents: 1,164

Respondent type	Proportion of respondents (%)
A carer or family member of someone with Down syndrome	61%
An individual sharing my personal views and experiences	11%
An individual responding on behalf of someone else	10%
An individual sharing my professional views	9%
An individual with another genetic condition or learning disability	66%
On behalf of an organisation (including voluntary and charitable sector)	4%

Figure 2: easy read respondents

Total respondents: 104

Respondent type	Proportion of respondents (%)
As a carer or family member of someone with Down syndrome	58%
Answering for myself	17%
Answering for someone else	16%
Answering as part of an organisation	9%

Sex of respondents

Figure 3: sex breakdowns of respondents to the main survey and easy read survey

Survey	Female	Male	Prefer not to answer or did not answer
Main survey	76%	22%	2%
Easy read survey	73%	24%	3%

Ethnicity of respondents

Figure 4: ethnicity breakdowns of respondents to the main survey and easy read survey

Survey	White	Ethnic minority groups	Prefer not to answer or did not answer
Main survey	90%	7%	3%
Easy read survey	82%	13%	5%

In the call for evidence surveys, the groups used above in Figure 4 were defined as follows:

• ‘White’ was described as ‘White - includes British, Northern Irish, Irish, Gypsy, Irish Traveller, Roma or any other White background’
• ‘Ethnic minority groups’ included the following groups:
  • Asian or British Asian - includes Indian, Pakistani, Bangladeshi, Chinese or any other Asian background
  • Black - Black British, Caribbean, African or any other Black background
  • Mixed or multiple ethnic groups - includes White and Black Caribbean, White and Black African, White and Asian or any other Mixed or multiple background
  • Other, includes Arab or any other ethnic group

Age of respondents

Note: Where the data in the following figures states ‘1%’, this refers to 5 or fewer respondents.

Figure 5: age breakdowns of respondents to the main survey

Age of respondents	Proportion of respondents (%)
Under 13	4%
13 to 18	5%
19 to 24	4%
25 to 34	9%
35 to 44	18%
45 to 54	24%
55 to 64	20%
65 to 74	11%
75 or older	3%
Prefer not to answer or did not answer	1%

Figure 6: age breakdowns of respondents to the easy read survey

Age of respondents	Proportion of respondents (%)
Under 13	1%
13 to 18	1%
19 to 24	6%
25 to 34	13%
35 to 44	15%
45 to 54	17%
55 to 64	14%
65 to 74	13%
75 or older	1%
Prefer not to answer or did not answer	15%

In addition to the survey, 66 contributions were received from organisations, professionals and people with lived experience directly to DHSC’s call for evidence mailbox. These email contributions contained a significant amount of qualitative evidence, and the main insights gathered from these responses have been considered and included when summarising the findings below.

About this outcome

The findings presented in the 6 sections below are a collection of the main themes identified from the responses to the call for evidence. The responses received have been summarised to provide an overview of the findings under each theme.

Due to the structure of the call for evidence, how the questions were targeted at different stakeholders and the variety of responses that were received, it is not possible to provide a systematic and quantitative review of these. However, measures have been taken to ensure this assessment presents a fair summary of the responses, including relevant detail, where possible, and minimising risk of bias.

While a large volume of responses was received, the results still only represent the views of those who completed the survey. Where ‘the views of respondents’ are referred to, this cannot be taken to be representative of the views of all people in England.

1. Health services

This topic focused on understanding the physical and mental health needs of people with Down syndrome. In particular, DHSC wanted to hear about people’s experiences with health services, including the extent to which respondents felt that the health needs of people with Down syndrome are being met and the support required to ensure this.

Health profile of people with Down syndrome

A number of submissions detailing the specific physical and mental health needs of people with Down syndrome were received. While respondents reported that these needs can vary depending on the individual, evidence was provided of a health profile shared by people with Down syndrome.

The needs reported by respondents, which were supported by accessible, peer-reviewed journal articles submitted during the call for evidence, included those related to a high prevalence of:

• congenital heart disease
• respiratory infections, such as pneumonia
• gastrointestinal issues, such as constipation and coeliac disease
• thyroid disorders, such as hypothyroidism and hyperthyroidism
• musculoskeletal conditions, including low muscle tone, lax ligaments and hypomobile joints
• immune dysregulation
• autoimmune disorders, such as type 1 diabetes
• hearing issues, such as conductive hearing loss due to glue ear
• vision issues, such as astigmatism, congenital cataracts and glaucoma
• dental issues and gum disease
• blood disorders, including leukaemia
• sleep disorders, such as sleep apnoea and parasomnias
• mental health disorders, including depression and obsessive-compulsive disorder (OCD)
• co-occurring diagnoses, such as autism spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD)
• weight gain, including obesity
• Alzheimer’s disease and young-onset dementia

The list of papers and evidence from which these needs were derived can be found in the Down syndrome needs profile paper, which has been published alongside this response and the Down Syndrome Act 2022 draft statutory guidance consultation.

Support required to meet the health needs of people with Down syndrome

Respondents reported that an understanding of the health profile and support needs of people with Down syndrome is needed. Support needs reported ranged from mobility support and advice on nutrition to eye, dental and hearing care and administrative assistance, including help with booking and attending medical appointments.

The evidence suggested that having healthcare professionals specially trained in how to communicate and support people with Down syndrome is crucial to good-quality service provision alongside regular access to general and specialist healthcare services, such as regular health checks, occupational therapy (OT) and speech and language therapy (SLT).

Respondents emphasised the importance of taking a person-centred approach to supporting people with Down syndrome, based on their individual needs rather than relying only on their diagnosis, with reasonable adjustments put in place where necessary.

For example, some respondents noted that health professionals should adjust the way they communicate according to the needs of the individual and that extending the length of appointments would give people with Down syndrome the opportunity to respond fully.

Some respondents highlighted that a dedicated healthcare professional, such as a learning disability nurse, should be assigned to each individual to ensure that there is familiarity and continuity at appointments.

Respondents also highlighted the need for healthcare professionals to involve and listen to the needs and concerns of people with Down syndrome, as well as their families and carers, throughout the healthcare experience.

Experiences of support provided by healthcare staff

DHSC wanted to understand how well people with Down syndrome felt supported by health professionals.

Most people with Down syndrome responded that they think they do get the health support they need in the main survey and easy read survey, at 64% and 67% respectively.

The main survey also showed that 45% of respondents with Down syndrome, or an individual responding on behalf of someone with Down syndrome, felt that health professionals know how to support and communicate with them, while the majority (72%) of respondents with Down syndrome reported feeling this way in the easy read survey.

Responses from families and carers of people with Down syndrome suggested that this support needs to improve.

Only 18% of families and carers responding to the easy read survey reported that health staff know how to support people with Down syndrome and talk to them in the right way. The results of the main survey presented a more mixed picture, with more families and carers reporting that certain professionals, such as occupational health therapists and speech language therapists, do understand how to support and communicate with people with Down syndrome, compared with others such as healthcare assistants and mental health professionals (see Figure 7 below).

Figure 7: extent to which families and carers feel that health professionals understand how to support and communicate with people with Down syndrome 

The data behind this figure is as follows:

Staff group	Strongly agree	Agree	Disagree	Strongly disagree	Do not know	Does not apply to me	No response
Speech and language therapists	9%	43%	24%	10%	9%	5%	1%
Occupational health therapists	4%	34%	27%	9%	16%	8%	1%
Dentists	4%	30%	38%	14%	11%	2%	1%
Opticians	2%	29%	39%	14%	12%	3%	1%
Nurses	2%	26%	47%	14%	9%	2%	0%
GPs (doctors)	2%	23%	47%	19%	7%	2%	0%
Hospital doctors	2%	20%	47%	19%	9%	2%	1%
Healthcare assistants	1%	16%	43%	13%	20%	5%	1%
Mental health professionals	2%	13%	32%	14%	24%	15%	1%

Aggregating the results of the easy read and main surveys showed that 57% of professionals responded that they ‘agree’, ‘strongly agree’ or responded ‘yes’ that they think the staff from their organisation do know how to support people with Down syndrome.

However, the findings suggested that a greater awareness of the legal duties for providing healthcare services to people with Down syndrome is required. Only 33% of professional respondents indicated that staff are aware of their legal duties when aggregating results across both versions of the survey.

Access to, and barriers within, the health system

DHSC wanted to understand people’s views on access to, and barriers within, the health system for individuals with Down syndrome.

Most families and carers of people with Down syndrome (68%) responding to the main survey said it was not easy to access information and advice about healthcare services in their local area, compared with 47% of those responding to the easy read survey. Respondents reported that the amount of local support can vary depending on the area and highlighted that access to this support can depend on how proactive families and carers are in seeking it out.

Other respondents commented that there is a lack of knowledge about what services are available and how to access them, with some families and carers reporting that there are only options when a crisis point is reached. Where there is awareness of the necessary processes to access support, such as mental health services, respondents reported that these can be lengthy and complex.

When specifically asked about barriers to accessing healthcare services, the majority of families and carers in the main survey said that they think there are barriers in accessing physical (86%) and mental health (81%) services for people with Down syndrome. Similarly, 78% of families and carers responding to the easy read survey said there are problems with health services (including mental health services) that stop people with Down syndrome getting the support they need.

Some of the barriers reported included:

• long waiting times
• lack of adequate and equal service provision
• workforce challenges, such as staff shortages and lack of specially trained professionals

Respondents also commented on barriers to receiving care once within the health system, including:

• communication issues between patients and practitioners
• lack of reasonable adjustments and flexibility in how services are delivered for people with Down syndrome
• diagnostic overshadowing, which is the attribution of a person’s symptoms to Down syndrome without assessing for other potential conditions that could be causing their symptoms

Several respondents said that access to services, as well as the quality of service received, can often depend on the individual with Down syndrome having a family member or carer to advocate for them.

The responses from professionals were similar, with 8 out of the 9 individuals answering the questions as part of an organisation in the easy read survey reporting that there are problems with health services that stop people with Down syndrome getting the support they need. In the main survey, most professionals said there were barriers to providing physical (78%) and mental health (77%) services for people with Down syndrome.

In addition to the challenges reported by families and carers, professional respondents noted the following barriers to access:

• insufficient hospital capacity
• lack of routine health checks
• lack of understanding among professionals
• lack of preventive health support, including health screening programmes for dementia, and measures to help individuals understand and maintain their own health
• lack of research on specific health interventions for people with Down syndrome

People with Down syndrome were asked what they would need to get the health support and services they require.

Some of the themes reported included staff training to help professionals better understand the specific health needs of individuals with Down syndrome and how best to communicate with them. Respondents commented that they want to feel listened to and understood by health professionals, with services tailored to their individual needs. For example, some respondents mentioned the need for accessible information in a suitable format, while others noted that healthcare professionals should use less complex language during their interactions.

People with Down syndrome also reported that, while more staff are needed, they would like continuity across the services they access - for example, seeing the same nurse or doctor at appointments. Families and carers also reported that there is a lack of a single point of contact or care co-ordinator for people with Down syndrome, as well as a need for more joined-up services.

Other suggestions provided by people with Down syndrome included:

• reduced waiting times
• longer appointments
• more proactive health checks
• follow-up support in the community

Best practice in delivering health services

When considering best practice, respondents were asked to provide examples of good experiences of physical and mental health services that have sought to meet the needs of people with Down syndrome.

Some respondents highlighted positive examples where staff had actively listened to and involved individuals in discussions about their care, and where reasonable adjustments, such as the provision of video explanations and easy read information, had been put in place.

In particular, respondents reported positive experiences with paediatrics and specialist services, such as dermatology and endocrinology, as well as privately provided care.

Other examples of best practice provided included:

• regular and extended appointments offered at appropriate times
• having a carer to support individuals to attend appointments
• follow-up calls and care from staff

Some respondents also noted where they had a positive experience with how the Down syndrome diagnosis was delivered - for example, where parents were informed of the diagnosis as soon as possible, in the right setting and without judgement from the healthcare professional delivering it.

Families and carers of people with Down syndrome highlighted positive experiences. This included support from community nursing teams and local charities who provide a space for people with Down syndrome, their families and carers to discuss their experiences, as well as signposting them to relevant information and services. Other examples of best practice included:

• receiving faster access to urgent emergency care
• the presence of play therapists in hospitals
• health and social care services working together to provide joined-up care for people with Down syndrome

Professional respondents were asked for examples of what works best to meet the health needs of people with Down syndrome. They noted the importance of:

• early intervention
• clear referral pathways
• positive behaviour support
• specialist staff and training to ensure health professionals are well equipped to understand, communicate with and treat people with Down syndrome

In terms of mental health support for people with Down syndrome, professional respondents highlighted the effectiveness of talking therapies, as well as drama and music groups.

Similarly to family and carer respondents, professionals said that joined-up working within the wider system is an example of best practice, including good communication between professionals and families, and across health, social care, education, housing and other local authority services.

Health needs of people with other genetic conditions and/or a learning disability

DHSC wanted to understand the similarities and differences between the health needs of people with Down syndrome and those with other genetic conditions and/or a learning disability.

Most of the professionals responding to the main and easy read surveys said that there are differences in the physical (65%) and mental health (57%) needs of people with Down syndrome compared with people with other genetic conditions. Over half of the families and carers responding to the main survey agreed that there were differences in the physical (59%) and mental health (53%) needs of individuals with Down syndrome compared with individuals with other genetic conditions.

Over half (60%) of professionals responding to the main survey said that they think people with other genetic conditions could benefit from the same health services that support people with Down syndrome. Similarly, 65% of families and carers responding to the main survey think that other people, such as those with other genetic conditions, could benefit from the same health services used to support people with Down syndrome.

To better understand the health needs of people with other genetic conditions, respondents with other genetic conditions were asked what support they require to stay healthy.

Like respondents with Down syndrome, they highlighted that they have a wide range of physical and mental health needs that require specialist and regular care. Many of the services listed as being required to support these health needs were the same as those reported by respondents with Down syndrome, such as physical therapies. Several respondents also reported that one-to-one support from carers is needed, with some individuals requiring 24-hour care and others requiring assistance with socialising, in addition to requirements for specialist equipment such as wheelchair services and feeding tubes.

When people with other genetic conditions were asked what would help them get the health support they need, they raised similar points to respondents with Down syndrome. Alongside reduced waiting times, more regular appointments and better staffing, respondents also highlighted the need for person-centred care delivered by healthcare professionals who are well trained in their specific condition as well as learning disabilities more generally. For example, respondents suggested that healthcare professionals should do research to understand their needs, where required, and tailor services accordingly to ensure that these needs are met.

Other themes included the need for:

• early intervention support
• testing and diagnosis at birth
• more local services
• promotion of equal rights

Some respondents commented that they would like to feel that their condition is recognised as just as important as others, such as Down syndrome.

People with other genetic conditions were asked for examples of when they have received good healthcare.

Similarly to people with Down syndrome, they reported positive experiences with paediatrics, specialist services and privately provided care. Specific examples of good care included regular appointments with the same healthcare professional, with respondents noting how this has helped build understanding, rapport and trust between practitioner and patient. People with other genetic conditions emphasised the importance of feeling listened to and having the right adjustments in place.

Respondents also provided examples of where they had a good experience because they were able to access care when they needed it in their local area, as well as where support was available for families and carers, such as respite care or help in the community. A number of respondents also noted the positive impact of co-ordinated care on their healthcare experience.

Health guidance: email responses

Individuals and organisations also sent in their views on health services directly to DHSC’s call for evidence mailbox by email. These responses related to both people with Down syndrome and people with other genetic conditions and/or a learning disability.

The responses received from organisations and individuals echoed many of the points raised across the survey responses. This included the importance of taking a life course approach to healthcare provision, with services supporting individuals from birth through to end-of-life care, including the transition from children’s to adults’ healthcare services.

They also agreed that advocacy and involving family members and relatives in care was beneficial, alongside multidisciplinary and co-ordinated approaches to supporting the needs of people with Down syndrome. For example, respondents suggested that there needs to be clear pathways between specialist, primary and secondary care services for conditions that are known to be common for people with Down syndrome.

Other significant themes included the need for increased training and awareness to support professionals to understand the needs of people with Down syndrome. Areas mentioned included:

• training on how to communicate with people who have a learning disability
• increased awareness of the accessible information standard
• training on the use of ‘do not attempt cardiopulmonary resuscitation’ orders

Better communication about the services available and support to book and attend appointments were also noted as necessary to help people with Down syndrome access the health services they need, alongside reasonable adjustments such as longer appointment times and accessible information.

There was concern among respondents about diagnostic overshadowing and a lack of specialist support, as well as concerns about whether all people with a learning disability were included on the learning disability register. Some responses also referred to instances of over-medication or inappropriate medication, such as unnecessary use of anti-psychotic medication.

Email respondents advised on the need for an understanding of common health conditions for people with Down syndrome to ensure these are spotted as early as possible so that interventions can take place. Some respondents mentioned the risk of dementia for people with Down syndrome and that specific attention should be paid to this risk in annual health checks.

Another theme was the importance of antenatal and postnatal care. This included suggestions that healthcare co-ordinators should be assigned to parents pre and post-birth, and that appropriate training should mean that parents are informed about their child in an appropriate way.

2. Adult social care

This topic focused on understanding the social care needs of people with Down syndrome. In particular, DHSC wanted to hear about people’s experiences with adult social care services, including the extent to which respondents felt that the social care needs of people with Down syndrome are being met and the support required to ensure this.

Support required to meet the social care needs of people with Down syndrome

Responses from people with Down syndrome detailed a range of social care support requirements, including those that related to their health and education needs as set out in this summary.

Some respondents with Down syndrome said they need social care support to go out into the community, plan and take part in health, social and leisure activities, and use transport effectively to, for example, attend appointments and get to work. Some respondents also highlighted the importance of support in making and maintaining social relationships and participating in the local community.

Some respondents noted that support is needed to help navigate the social care system, and understand and manage benefits and financial entitlements. Others highlighted support areas including help with:

• domestic tasks, including personal care, food preparation and administration of medication
• administrative tasks, such as filling out forms, arranging medical appointments and budgeting

Some respondents highlighted the need for support in keeping people with Down syndrome safe from harm, such as in relation to road safety, as well as protection from potential abuse and exploitation. The need for support in securing appropriate accommodation was prominent in the responses, as was the need for support to obtain suitable employment.

The responses emphasised a need for respite support for carers or parents, with some respondents suggesting that a personal assistant would be helpful.

Some respondents focused on the need for a person-centred approach to the provision of social care support. Continuity of care and long-term planning were highlighted as particularly beneficial to ensure a smooth transition from children’s to adults’ social care services.

Some responses suggested that more staff training on the specific characteristics of Down syndrome is required to ensure that support needs are met in the most effective way, including better education for staff on the legal framework and legal duties on local authorities in supporting people with Down syndrome.

Experience of support provided by adult social care staff

DHSC wanted to understand how well people with Down syndrome felt supported by social care professionals.

Most people with Down syndrome who responded to the main survey (59%) said they do not think they get the adult social care support they need. In contrast, half (50%) of people with Down syndrome responding to the easy read survey said they think they get the adult social care support they need.

The main survey showed that 41% of people with Down syndrome think that adult social care staff know how to support and communicate with them, with the easy read survey reporting similar results at 39%.

Responses from families and carers with Down syndrome also suggested that social care support does not meet people’s needs.

Only 10% of families and carers responding to the easy read survey reported that social care staff know how to support people with Down syndrome and talk to them in the right way. The results of the main survey presented a more mixed picture, with more families and carers reporting that certain professionals, such as occupational therapists and care workers, do understand how to support and communicate with people with Down syndrome, compared with others such as housing officers and registered managers (see figure 8 below).

Figure 8: extent to which families and carers responding to the main survey think that social care professionals understand how to support and communicate with people with Down syndrome

The data behind this figure is as follows:

Staff group	Strongly agree	Agree	Disagree	Strongly disagree	Do not know	Does not apply to me	No response
Occupational therapists	3%	29%	25%	9%	21%	11%	3%
Personal assistants	5%	20%	15%	6%	24%	27%	3%
Care workers	2%	23%	30%	10%	20%	13%	3%
Community support workers	2%	17%	24%	9%	26%	20%	2%
Social workers	2%	15%	29%	14%	19%	18%	3%
Residential support workers	2%	15%	18%	7%	22%	33%	3%
Family support workers	2%	14%	20%	8%	28%	26%	2%
Mental health professionals	2%	13%	29%	10%	29%	15%	3%
Social care assessors	1%	9%	26%	18%	23%	20%	3%
Care co-ordinators	2%	8%	23%	12%	29%	24%	3%
Registered managers	1%	8%	18%	10%	31%	30%	3%
Housing officers	1%	2%	20%	13%	27%	35%	3%

Aggregating the results of the easy read and main surveys showed that 31% of professionals responded that they ‘agree’, ‘strongly agree’ or responded ‘yes’ that they think the social care staff from their organisation do know how to support people with Down syndrome.

Similarly to the health findings, professional respondents suggested that a greater awareness of the legal obligations and legal duties, which are relevant when providing social care services to people with Down syndrome, is required. When aggregating results across both versions of the survey, only 20% of professional respondents indicated that staff are aware of what they must do by law to support people with Down syndrome.

Access to, and barriers within, the social care system

DHSC wanted to understand people’s views on access to, and barriers within, the social care system for individuals with Down syndrome.

Most families and carers of people with Down syndrome (74%) responding to the main survey said it was not easy to access information and advice about adult social care services in their local area, compared with 35% of families and carers in the easy read survey.

The responses drew attention to a lack of information about the support and benefits available to individuals and their families, with people having to make their own enquiries or rely on word of mouth. Respondents suggested that people with Down syndrome would benefit from having an advocate to help gain the support needed to enable independent living, instead of parents and carers having to fight for it on their behalf.

When specifically asked about the barriers to accessing social care services, the majority (83%) of families and carers responding to the main survey said that they think there are barriers in accessing adult social care. This figure was lower for the easy read survey, with just over half (55%) of families and carers reporting that they feel there are barriers to access. Under half of professional respondents (42%) reported barriers to accessing adult social care when aggregating the results across the main and easy read surveys.

A significant barrier to accessing social care services raised by respondents was funding.

Some respondents reported that, when benefits are provided, they do not cover the costs of care required, which means family members act as unpaid carers. Some professional respondents highlighted that services may be provided on the basis of available funding rather than being person centred, which can have a direct impact on the level of care offered by social care support staff. Similarly, some respondents reported that respite care is not adequately provided, putting further strain on families.

People with Down syndrome highlighted that they may have to wait a long time to receive social care support, which causes concern about what would happen without the support of their family members. A theme across some responses was that a lack of funding had resulted in a reduction, or removal, of social care support for some individuals.

Some responses reported perceived inadequacies of the social care assessment processes, with some respondents reporting that such assessments are not accessible for many people with Down syndrome. It was reported by some parents and carers that long referral processes and high thresholds to meet the criteria for social care support also left some families waiting a long time, or in some cases until crisis point was reached, to receive support for issues that required prompt intervention.

Some professional respondents suggested that a better understanding of Down syndrome among social care staff is required to provide informed assessments of needs and suitable support. They also highlighted that such assessments need to be person centred to be effective.

Other barriers reported included:

• a lack of continuity in social care provision
• the need for better education for social care providers on the specific profile of Down syndrome
• a lack of person-centred, needs-based approaches

Parents and carers stressed the importance of consistency in social care support, including how to communicate effectively with the individual, noting the varying degree of knowledge about Down syndrome among support staff. A strong rapport between the support worker and the person with Down syndrome was highlighted by some respondents as essential to providing adequate care.

Professionals highlighted the broad spectrum of ability, and therefore support needs, among people with Down syndrome, which they felt was often not recognised by local authorities. Some professional respondents felt that to provide suitable social care support, social care providers need to listen to, and assess, the individual needs of people with Down syndrome.

Professionals also stressed the importance of proactive, long-term planning of social care support provision to ensure the safety and wellbeing of the person with Down syndrome, as well as joined-up working among health, social care and housing providers.

Best practice in delivering social care services

Some respondents highlighted examples of good practice within social care.

These respondents noted good experiences with social care workers where they had a positive attitude and offered the individual praise, encouragement and a listening ear. Similarly, some respondents with Down syndrome highlighted the benefit of having a personal assistant who treats them with respect and helps them in their daily activities.

Professionals, families and carers emphasised the value of a well trained support worker who can understand and cater to the needs of the individual with Down syndrome and offer respite care for the family. These respondents also noted positive experiences with direct payments, which had provided them with autonomy and flexibility in choosing the right support team for their child.

Some responses from parents and carers highlighted positive experiences with supported living arrangements, which in some cases had increased the independence of the person with Down syndrome and enabled them to participate in their local community and/or gain paid employment.

Some people with Down syndrome similarly noted the value of being able to engage in joint social activities with other people in supported living settings in their local community.

Professionals emphasised the value of joined-up working among health and care professionals to promote independence and freedom of choice for the person with Down syndrome.

Some parents and carers also offered positive examples of engagement with their local community specialist teams. Such examples highlighted the various ways in which these teams have assisted their family, including:

• securing adequate funding for their child’s social care
• arranging appropriate activities
• being on hand to answer a range of concerns

Similarly, some parents and carers cited positive experiences with voluntary sector organisations, particularly around provision of social activities and community support groups.

Some professionals noted the importance of wider support to encourage people with Down syndrome to engage with their local communities and achieve a sense of belonging in society.

Social care needs of people with other genetic conditions and/or a learning disability

DHSC wanted to understand the similarities and differences between the social care needs of people with Down syndrome and those with other genetic conditions.

The aggregated results across the main and easy read surveys show that 31% of professional respondents said that there are differences in the social care needs of people with Down syndrome and other genetic conditions. Similarly, 49% of families and carers in the main survey said that they think there are differences in social care needs, but this figure was lower for the easy read survey at 22%.

When asked if people with other genetic conditions could benefit from the same adult social care services used to support people with Down syndrome, the professional responses presented a mixed picture. Only 33% of professionals responding to the main survey said that people with other genetic conditions could benefit from the same social care services as people with Down syndrome, compared with 6 out of the 9 individuals responding in the easy read survey as part of an organisation.

Over half of families and carers (58%) agreed with this across both surveys.

To better understand the social care needs of people with other genetic conditions, respondents were asked what support they required from adult social care services. The responses cited similar social care needs to those raised by people with Down syndrome, including support from a social worker or personal assistant to help with daily tasks such as domestic management, personal care and going out in the community safely. The responses demonstrated a wide range of support needs, with some respondents requiring one-to-one or 24-hour care while others specified that they do not require any social care support.

When people with other genetic conditions were asked what would help them to get the health support they need, the responses were similar to those received from people with Down syndrome. They highlighted the need for:

• more accessible information on the support available
• more training for support workers on their specific condition
• a more person-centred approach to social care provision

Up-to-date care plans were highlighted as essential to provision of appropriate, consistent social care support.

Some people with other genetic conditions also cited increased funding for social care as something that would help them receive support, both to help mitigate long waiting times and increase the number of social care workers available. There was a widespread perception among people with other genetic conditions of under-provision of social care support, which they felt left some people without the support they require.

Social care guidance: email responses

Individuals and organisations also sent in their views on social care directly to DHSC’s call for evidence mailbox by email. These responses related to both people with Down syndrome and people with other genetic conditions and/or a learning disability.

The email responses noted similar themes to those raised in the survey responses.

A lack of awareness of, and access to, social care support was highlighted across some email responses, with funding and workforce issues cited as the main reasons behind this. Some respondents highlighted the need to provide families with more flexible funding, as well as to ensure social care funding is ring-fenced to protect people who rely on it. Respondents also felt that the high level of administrative burden placed excessive pressure on families and compromised their chances of receiving adequate social care funding.

As outlined in the surveys, the need for continuity of care and a person-centred approach was prominent across the email responses, with further detail included on, for example, the risks of misdiagnosis when continuity of care is not provided. Some responses also cited the benefits of preventive services to avoid more intensive and costly interventions at a later date.

In terms of workforce, some email respondents drew attention to a lack of understanding among social care staff of current and forthcoming legislation relating to the provision of social care. These responses highlighted the need to outline how the Down Syndrome Act guidance will align with existing legislation. They also noted a perceived reduction in locally accountable bodies to ensure adherence to relevant guidelines.

Some respondents highlighted the need to educate social care providers on reasonable adjustments to ensure that people with Down syndrome can understand and communicate their needs in relation to health, employment, accessibility, accommodation and general quality of life. This includes:

• disseminating information on the mental and physical health needs of people with Down syndrome to social care staff
• outlining how these needs change throughout their lives
• including detail on dual diagnoses and ageing

Email responses also suggested that adult social care services should have access to a dementia specialist to ensure needs around dementia are properly supported for people with Down syndrome.

Some responses highlighted the need to craft attractive career paths for social care support workers, with opportunities for progression, to reduce the current high staff turnover in this field.

Some email respondents provided examples of inadequate social care provision, which had knock-on effects for wider public services. They reported a concern that, without social care support, it was difficult for families to raise concerns appropriately - for example, to make a complaint to the police in the event of abuse on behalf of their child if the individual is over the age of 18.

In addition, email responses highlighted the importance of encouraging aspiration in, and for, people with Down syndrome, noting society’s general low expectations for people with Down syndrome and the corresponding negative effects this may have on their lifetime achievements.

3. Education, children and young people

This topic focused on understanding the support and education needs of children and young people with Down syndrome. In particular, DHSC wanted to understand what support is required to help young people prepare for adulthood. Respondents were asked to provide examples of best practice across:

• education
• children’s social care
• youth offending teams

Education profile of people with Down syndrome

A number of submissions were received detailing the specific developmental profile (behavioural phenotype) of both strengths and challenges associated with having Down syndrome, and its relevance for understanding the educational needs of people with Down syndrome.

While acknowledging that there are significant differences in the extent to which these influence the development of each individual with Down syndrome, the needs reported by respondents, which were supported by accessible, peer-reviewed journal articles submitted during the call for evidence, included:

• strengths in social development and learning
• varied cognitive development, which is typically impaired
• delays in development of fine and gross motor skills
• delays and challenges in developing, using and processing spoken language
• impact of hearing loss on education, such as difficulty with phonics and listening to whole-class input
• difficulties with sensory processing
• challenges in developing numeracy skills
• relative strengths in reading abilities (compared with language and cognitive development)

Preparation for adulthood

Respondents were asked what support would help young people with Down syndrome prepare for adulthood.

Respondents with Down syndrome highlighted the importance of being taught ‘life skills’ as part of their educational needs, including how to:

• manage money
• use transport
• conduct domestic tasks
• manage time

Some of these respondents suggested a need for assistance on the transition from school or college into adult life and living independently, such as more support to go into employment or higher education.

People with Down syndrome, as well as their parents and carers, thought that they should be treated as adults with higher expectations for their education and career.

Some parents and carers highlighted the need for individualised and holistic care including thorough education, health and care (EHC) plans, and a package of support that exists throughout the life of those with Down syndrome. Similarly, respondents with Down syndrome emphasised the need for individual support, such as social worker support and SLT.

Professional respondents also highlighted the need to have high and clear expectations of pupils with Down syndrome, with specific training for teachers on Down syndrome. Some professional respondents noted the need for education to include support on:

• transitions into adulthood
• independent living
• the associated practical skills needed for this, with some respondents referring to the need for allocated social workers to support them

There was support for the idea of joined-up services working together to help the individual and support tailored to individual needs.

Some parents and carers highlighted a need for increased funding and specialist training for local authorities and educators who support people with Down syndrome.

Best practice

Education

Respondents were asked to share their experiences of good support for people with Down syndrome in school or college.

Respondents with Down syndrome emphasised the importance of support in the classroom, both from teaching assistants who could provide one-to-one help and teachers who had knowledge on how to support people with Down syndrome in mainstream schools. Some respondents described the benefits of attending specialist schools and residential colleges, noting they were helpful for more practical skills and personal needs.

Parents and carers provided examples of good practice that benefited people with Down syndrome in mainstream and specialist schools. Some respondents suggested that specialist schools were seen as positive due to the highly trained specialist staff available and the support they could offer for individual needs. Some respondents reported that an inclusive environment is beneficial to pupils with Down syndrome and their education - however, they noted that inclusivity is very varied across mainstream schools.

Parents, carers and professionals highlighted how important individual support was for people with Down syndrome throughout their education, as well as access to trained and specialist staff in all school and college settings. They also mentioned the importance of residential colleges in helping attendees with independent living.

Professional respondents highlighted the importance of listening to parents and not assuming all children with Down syndrome should go to specialist schools, as well as respecting the choice of parents in these decisions. Some respondents suggested that evidence has shown that inclusive education with typically developing peers is most effective for children with Down syndrome.

Professionals responding to the survey also noted the importance of local joined-up support and recommended the development benefits of having communication strategies for people with Down syndrome in place.

Children’s social care

Respondents were asked to share examples of where children’s social care services had worked to meet the needs of children and young people with Down syndrome.

Respondents with Down syndrome highlighted the importance of strong communication from social care workers, as well as personalised care tailored to meet their needs. Respondents also noted the importance of social care workers developing relationships with people with Down syndrome and their families.

Some parents and carers agreed that good social workers are vital for people with Down syndrome. For example, some respondents referred to how well trained personal assistants and social workers were able to give specific and personalised care that was suited to individual needs.

Parent and carer respondents found funding support to be useful, especially direct payments that could be spent on social and sport activities. They also found local ‘buddy systems’ beneficial in accessing mainstream activities, alongside inclusive activity groups.

Some professionals mentioned how important it was that carers and families were given support, including having access to specific training on Down syndrome and the opportunity to take part in activities as a family. They also mentioned the importance of organisations working together to offer individuals a person-centred approach.

Professionals reported that conversations regarding the future of people with Down syndrome were best done early so that the transition period to adulthood could be prepared for effectively.

They suggested that people with Down syndrome benefit from engaging in social activities through groups, as well as from receiving support from charity organisations that help with their social lives.

Youth offending teams

Respondents were asked for best practice examples of where youth offending teams had worked to support children and young people with Down syndrome.

While not many respondents (less than 10) shared their experiences, the responses received highlighted that clear explanations of the law are important, such as responses mentioning the benefits of speaking with members of a youth offending team and noting that work experience with the police would be helpful for those with Down syndrome.

Some professional respondents advised that their services had good relationships with the local police and youth offending teams. Some respondents also mentioned how they require help from speech and language therapists to communicate with offenders.

Professionals also referred to the need for training for police and youth offending teams so that they better understand the issues that could arise as a result of an individual having Down syndrome.

Guidance on education, children and young people for those with other genetic conditions and/or a learning disability

DHSC wanted to hear about the experiences of people with other genetic conditions across education and children’s social care.

Respondents noted the advantages of having specially trained staff at schools and one-to-one classroom support. Respondents with other genetic conditions were supportive of both specialist and mainstream schools, as well as pre-school at nurseries. They highlighted that it was important for staff to be trained to work with someone with a particular genetic condition and that doing this training regularly helped keep staff up to date.

Similarly to people with Down syndrome, respondents valued their EHC plan in supporting their development, as well as the opportunity to go to residential colleges, which enabled them to learn practical skills to live independently.

In terms of social care, some people with other genetic conditions praised their experience in early years, with some mentioning educational service Portage as particularly helpful.

Like respondents with Down syndrome, they highlighted the importance of having:

• support to live independently
• local respite centres
• skilled support, including from personal assistants and specialist staff
• direct funding to help families cope and to pay for social activities that could help with their social skills

Education, children and young people: email responses

Individuals and organisations also sent in their views on education and children’s social care directly to DHSC’s call for evidence mailbox by email. These responses related to both people with Down syndrome and people with other genetic conditions and/or a learning disability.

As across the other themes, the email responses noted similar points to those raised in the surveys.

Some respondents highlighted the importance of:

• early intervention services
• having an EHC plan in place
• advocacy to help schools and colleges understand the specific learning profile of children with Down syndrome, such as having Down syndrome champions nominated in educational settings

Respondents noted the need for specialist teachers and SLT, as well as specialist staff training for teachers and learning support assistants.

They also referenced that support needs to be in place for people with other genetic conditions, as well as for parents with disabilities who require help supporting their children through education. The need for alternative qualification routes for children with a learning disability was mentioned in the email responses, as was a perceived need for funding to support additional education services.

Some email respondents also referred to the importance of inclusion in educational settings, including primary, secondary and further education, with reports that discriminatory practice can occur as a result of lower expectations of the development of children with Down syndrome. Responses also included the suggestion that children should have the opportunity to enter mainstream schooling without pressure to go to a specialist school.

Organisations mentioned that there needs to be more education in place to support people who might be vulnerable to being targeted by criminals.

4. Housing

This topic focused on understanding the housing needs of people with Down syndrome. In particular, DHSC wanted to hear about people’s experiences with housing services, including the extent to which respondents felt they met the needs of people with Down syndrome and the support required to ensure this.

Support required to meet the housing needs of people with Down syndrome

DHSC wanted to develop a better understanding of the housing needs for people with Down syndrome.

Parents and carers emphasised the importance of having a needs assessment before individuals move to a different type of accommodation, followed by ongoing support and further assessments, where needed, to support better independent living. When asked what support is required to live independently, needs ranged from full-time 24-hour support through to help with money management, cooking and cleaning, and assistance travelling to and from work.

Some respondents reported that having good working practices between care and housing providers is essential, with co-production a primary example of what works best so that people and their support networks are fully embedded in the process.

While many of the questions focused on how people with Down syndrome could live independently, some family and carer respondents stressed the importance of choice and ensuring individuals can make decisions on whether they would like to live alone or in a smaller or wider community setting that meets their needs. Professional respondents echoed this, highlighting that people have differing needs in terms of housing support and should be given choice around accommodation in the same way as the rest of the population.

However, several respondents stated that DHSC should be realistic about the range of housing options that can be provided, given a perceived shortage of care homes and supported living providers, which are issues respondents felt needed to be addressed in the short and longer term.

When asked what would be helpful to include in the guidance for organisations providing housing support services to people with Down syndrome, professional respondents suggested:

• setting out the housing rights for people with Down syndrome
• outlining the full options available to them and their families and carers
• clearly explaining how to access services and who to contact, as well as how to make a complaint if they are not offered the most appropriate housing choice that meets their needs
• providing clarity on the different types of tenure - for example, clarifying the differences between registered and supported care, and encouraging the development of a person-centred plan that can be instrumental in helping people to make the best decisions

Some respondents stated that the guidance should also help organisations to understand the communication needs of people with Down syndrome, linking this with specific training, interventions and strategies that support an integrated approach between health, social care and housing providers.

Provision of housing services

DHSC wanted to understand how well people with Down syndrome felt supported by local housing support services.

Over half (59%) of people with Down syndrome responding to the main survey and 39% responding to the easy read survey said they are already living independently or plan to do so in the future. However, only 28% of people with Down syndrome who responded to the easy read survey said they know what support there is in their local area to help them live in their own home.

Similarly, most families and carers responding to the main survey (76%) and the easy read survey (60%) said they do not know what support their local council could provide to support people with Down syndrome to live independently in their own home.

Professional respondents were asked about provision of housing services through local authorities, as well as provision through their organisation.

When aggregating the results across the main and easy read surveys, 9% of professional respondents said they ‘agree’, ‘strongly agree’ or responded ‘yes’ that they think local councils understand the need for housing in their local area. Similarly, 8% of professional respondents said they ‘agree’, ‘strongly agree’ or responded ‘yes’ that they think local councils understand the need for integrated approaches to deliver housing with health and social care.

When asked about the housing services provided through their organisation and aggregating results across the main and easy read surveys, 24% said they ‘agree’, ‘strongly agree’ or responded ‘yes’ that the staff in their organisation understand how to support the specific needs of people with Down syndrome.

Access to, and barriers within, the housing system

DHSC wanted to understand people’s views on access to, and barriers within, housing provision for people with Down syndrome.

Only 8% of families and carers responding to the easy read survey and 11% responding to the main survey said that it was easy to get information and advice from their local council about housing support in their area.

When specifically asked about barriers accessing housing support services, 86% of families and carers in the main survey said there were barriers in accessing housing support services for people with Down syndrome, compared with 48% of families and carers in the easy read survey. Some of the listed barriers included:

• not having regular advocates or family and friends nearby to support individuals with Down syndrome to raise safety and security concerns, given their varying degrees of vulnerability
• the lack of available or suitable housing to support successful independent living
• the flexibility to adapt these properties to suit individual needs where necessary

Less than half (35% when aggregating results across the main and easy read surveys) of professionals said there were barriers in accessing housing support services for people with Down syndrome and highlighted similar concerns to families and carers.

For example, a reported lack of suitable properties was the main concern, along with the inability to adapt housing to meet individual needs, particularly if mobility should decrease over time. Another barrier raised by some professionals was a perceived lack of joint working and strategic commissioning across government departments, health and social care and local authorities, as well as the need for more investment to address current and future housing challenges.

Some professionals also stated that communication with organisations, including local authorities, was crucial to understanding the bespoke requirements for people with Down syndrome with complex needs. They also highlighted the need to shift perspectives so that they are looking at the individual, rather than their Down syndrome diagnosis, while learning to embrace a more inclusive way of working.

Best practice in delivering housing services

When considering best practice in delivering housing services, people with Down syndrome and their families and carers were asked to provide examples of where services met the needs of people with Down syndrome.

While not many examples from people with Down syndrome were received, some respondents noted the importance of:

• housing information being provided in an easy read format
• specialist, well trained staff
• local authority funding to facilitate independent living

Families and carers highlighted positive examples from the independent sector where support workers had ‘gone the extra mile’ to provide excellent care or shared brilliant advice to support people with Down syndrome or those caring for them.

Some respondents described positive experiences with local housing officers and benefits teams providing housing advice and guidance. Another respondent highlighted how a social worker and care manager had supported them through the process of moving into a supported living flat, including providing an easy-to-understand contract with pictures so they fully understood the requirements before signing the tenancy.

While there were a range of examples of good practice, it is important to note that a large number of respondents reported negative experiences where they had received little or no support with housing services.

Professional respondents highlighted the importance of having good supported living providers as a positive way of helping people with Down syndrome to have their own tenancy and live as independently as possible.

Another theme highlighted was co-production with a multidisciplinary team - for example, having a joint assessment between service users, their family, and housing and learning disability services, occupational therapists and social workers.

One respondent said they were piloting an app to support the ongoing decision making of young people with Down syndrome and those with a learning disability.

When considering all of the best practice options, some professionals also stated that it was important that individuals, families and carers are provided with choice so together they can make informed decisions about accommodation and the right time to pursue this.

Housing needs of people with other genetic conditions and/or a learning disability

DHSC wanted to understand the similarities and differences between the housing support needs of people with Down syndrome and those with other genetic conditions.

Just under half (49%) of families and carers of people with Down syndrome responding to the main survey said that there are differences in the housing support needs of people with Down syndrome and people with other genetic conditions. In the easy read survey, 32% of families and carers said they think people with other genetic conditions need different housing support to people with Down syndrome, while 40% responded that they did not know.

In contrast, most families and carers (78%) responding to the easy read survey, and 62% responding to the main survey, said that housing support for people with Down syndrome could also be helpful for, or benefit, people with other conditions, such as a learning disability.

To better understand the housing needs of people with other genetic conditions, respondents were asked to describe what support they require to live independently.

Most (58%) people with other genetic conditions responding to the easy read survey said they do not live on their own, nor do they plan to in the future. Some respondents highlighted that they would require a range of housing support services to live independently in their own home, from 24-hour care and house adaptations through to support with daily activities such as shopping, cleaning and handling finances.

When people with other genetic conditions were asked what would help them get the housing support they need, they raised similar points to respondents with Down syndrome. This included support from their local council, housing benefits and access to support workers.

In contrast, some family and carers questioned the merits of using a support package designed for people with Down syndrome to support people with other genetic conditions due to differing needs. Overall, the respondents stressed that the focus should be on individual need, rather than diagnosis, and highlighted concerns about the potential prioritisation of people with Down syndrome. They highlighted that the focus should be to ensure everyone, regardless of type of disability, has the right housing support services to live as independent and fulfilling a life as possible.

Several families and carers also stated that it was too early to say what level of support would be needed in the future and that there should be better planning early on to prepare for later transition towards living more independently as adults.

Housing guidance: email responses

Individuals and organisations also sent in their views on housing services directly to DHSC’s call for evidence mailbox by email. These responses related to both people with Down syndrome and people with other genetic conditions and/or a learning disability.

Some of the themes mentioned in the main and easy read surveys were also referred to in the email responses. Respondents also stressed the importance of sufficient and well spent funding where local authorities encourage use of the full range of providers available. They stated the importance of individual support networks, such as ensuring people are not housed with other people of very different ages or needs so a more effective mutual support network can be developed.

Organisations emphasised the need for ‘future proofing’ due to people’s needs and aspirations changing over time, with some respondents referencing the likelihood of developing dementia.

Email respondents also highlighted the importance of housing support needs being considered alongside provision of other services - for example, being close to good transport, the local community and leisure opportunities to avoid the negative impacts of social isolation and loneliness.

In terms of the guidance, there were suggestions that it could include content about assessments of capacity in relation to the Mental Capacity Act 2005 and the need to reduce inequalities so that disabled people have the same choices as those who are non-disabled.

5. General good practice

This topic focused on understanding what other public services respondents would like to see included within the guidance, in addition to health, social care, education, housing and other local authority services.

In particular, DHSC wanted to hear people’s views on general best practice across public services that are meeting the needs of people with Down syndrome, as well as the support required to help professionals better understand these needs.

Views on the Down Syndrome Act guidance

Respondents were asked for their views on the scope of the guidance, including other public services they would like to see considered for inclusion.

Respondents with Down syndrome stated that better, well written information on Down syndrome is required, suggesting that the guidance should provide a rounded view of the needs of people with Down syndrome and be properly enforced.

Respondents emphasised that they wanted to be treated as individuals and for society to be more inclusive towards people with Down syndrome. For example, respondents said that young people should be granted more choices over how to live their lives, including the time and support to be independent and for their voices to be heard.

Some respondents also took this opportunity to reinforce some of their suggestions provided throughout the call for evidence, including the need for:

• better staff training
• easier access to services (for example, through making the paperwork and process simpler)
• support with communication, independent living and gaining employment

For example, some respondents suggested that the benefits system should specifically consider the needs of people with Down syndrome, so they do not fear losing their benefits and housing if they gain employment.

Similarly, others suggested that the NHS should recognise the needs of people with Down syndrome across all services, including the need for further support for expectant mothers of babies with Down syndrome.

Families and carers of people with Down syndrome suggested a number of public services for DHSC to consider including in the guidance, for example:

• employment
• the emergency services
• transport
• other community services, such as libraries and sports, leisure and social activities

Some respondents also noted the relevance of the charity and private sectors, including guidance for people with Down syndrome on how to manage their finance and bills.

Education was a recurring theme, with respondents requesting increased training on Down syndrome across educational establishments, health and social care settings, organisations and local authority services. For example, some families reported that they thought special educational needs and disabilities (SEND) teams repeatedly struggled to meet their legal obligations.

Some respondents also highlighted that finding a job for people with Down syndrome was difficult and that jobcentre staff should be specifically trained on how to work with them. Similar suggestions included a need for investment in employment coaches, as well as learning disability awareness for organisations to encourage and support firms to hire people with a learning disability.

Another important area noted for consideration was support for parents and families, including clear advice on what respite care is available and how it can be accessed.

Professional respondents highlighted that all public services need to have at least a basic understanding of the needs of people with Down syndrome. When asked which specific public services the guidance should focus on, professionals also listed:

• transport
• employment
• the emergency services
• voluntary sectors including the arts

There was an emphasis on public recreational services being included in the guidance to ensure there are genuine opportunities for people with Down syndrome to have access to inclusive and diverse sport and leisure activities. Professional respondents also highlighted the importance of independent advocacy services and specialist SLT services, including joining up health, education and legal advice.

People with other genetic conditions and/or a learning disability were also asked what they would like to see covered in the guidance.

Some respondents echoed the responses provided in relation to people with Down syndrome, including the need for more staff training, funding, accessible information and support for parents and carers.

However, the overarching themes were that, in their view, the guidance should be inclusive of all genetic conditions, due to their concerns that the act could introduce a hierarchy of diagnosis, as well as the need for people with other genetic conditions and/or a learning disability to receive equal treatment. Some of these respondents suggested that the guidance, alongside care and support, should be based on the needs of the individual rather than their diagnosis.

Respondents also highlighted the importance of accountability for implementation of the guidance, with some suggesting there should be more scrutiny of service providers.

Best practice examples: other public services

To better understand which existing services are working well to meet the needs of people with Down syndrome, respondents were asked to provide examples of best practice across other public services.

One of the themes that emerged was the work of the independent sector, where some people reported that charities and churches are doing a good job teaching people with Down syndrome new skills such as gardening, cooking and learning to play instruments, enabling more socialisation.

Another theme highlighted the importance of having people with the right training in the right places to support people with Down syndrome. For example, several respondents reported that having a specialist disability nurse to assist in different acute and community settings was extremely beneficial because they are likely to understand the physical needs of people with Down syndrome. There were also other positive examples, including taxi services sending their drivers on training courses to understand people’s needs, as well as retail services offering a quiet time for people with ASD, which could be expanded to include people with other disabilities.

However, some respondents also noted the challenges of insufficient funding and limited resources, which they felt often serve as a barrier to offering a full range of inclusive services for people with Down syndrome.

Professional respondents identified areas such as the arts and sporting programmes taking place in schools and leisure centres where, for example, people with Down syndrome are being encouraged to participate in gymnastics where possible. Some district councils are also facilitating access to transport services to help people with disabilities get more involved with sports.

Respondents highlighted positive cases across health services that are specifically catering to the needs of people with Down syndrome, including proactive dementia screening services and having specific learning disability nurses in community settings.

While there were some positive examples, several respondents reported that the positive experiences were a result of individuals going out of their way to offer bespoke services, rather than the overall service itself, which they felt needs improvement.

Workforce across all services

Families and carers of people with Down syndrome were asked if they think there is more that could be done to support professionals to understand the needs of people with Down syndrome.

One of the main suggestions was that professionals should be provided with more training to enhance their understanding of Down syndrome, as well as learning disabilities more generally. Some respondents suggested that this training should be mandatory and involve people with lived experience in its delivery. Primary training areas included:

• strategies on how best to communicate with people with Down syndrome, with some respondents suggesting that everyone should have basic Makaton training
• training for social workers carrying out care plan assessments

In addition, families and carers emphasised the need for better public awareness of Down syndrome, including in the mainstream media and education settings where both staff and pupils should be informed on the needs of people with Down syndrome.

Respondents also advocated for better co-ordination across public services, such as suggesting that, where a child with Down syndrome has an EHC plan in place, the guidance should require education authorities to share this information with health services automatically.

Professionals were also asked if they thought more could be done to support them in understanding the needs of people with Down syndrome. Like the families and carers who responded, professionals agreed that more training is required on the specific needs of people with Down syndrome, as well as on other genetic conditions and learning disabilities, in order to deliver more person-centred support. This includes having access to up-to-date information and resources, such as evidence-based practice guidance on the health needs of people with Down syndrome.

It was suggested that local charities could be asked to provide training, and that workplaces could establish disability champions to support and raise awareness among colleagues.

Professional respondents also said that they would like more communication with people with Down syndrome, their families and other professionals to build relationships, share knowledge and improve understanding and awareness.

General good practice: email responses

Individuals and organisations also sent in their views on the guidance and good practice across other public services directly to DHSC’s call for evidence mailbox by email. These responses related to both people with Down syndrome and people with other genetic conditions and/or a learning disability.

Many of the responses received were similar to those provided across the surveys, including on the need for more funding and workforce training. For example, some respondents suggested that training, such as the Oliver McGowan Mandatory Training on Learning Disability and Autism, should be extended to all industries and sectors rather than just health and social care. They also suggested that there should be additional funding to support community learning disability teams to provide services such as dementia screening to people with Down syndrome.

Email respondents suggested that the guidance should outline how the current legal frameworks can be put into practice and enforced, with some respondents reporting they thought many of the needs attached to these legal duties are currently unmet.

Responses emphasised the need for examples of good practice in the guidance, alongside better data collection to provide a better understanding of:

• how many people are accessing services and support
• what their outcomes are
• how many have their needs unmet

On the wider benefits of the guidance, some email respondents suggested that the guidance should cover all people with a learning disability and ASD. Respondents suggested that there should be dedicated research funding and regional tertiary services that can help develop the expertise to support people with Down syndrome and those with other genetic conditions and/or a learning disability.

In terms of other public services, some email respondents noted that there should be greater emphasis on gaining paid employment and longer supported internships. For example, some respondents suggested that supported internships should be longer than 12 weeks. Supported internships are a structured, work-based study programme for 16 to 24 year olds with SEND who have an EHC plan.

Other respondents highlighted that there should be a separate classification for crimes against people with disabilities, rather than it being classed as a hate crime. Respondents also welcomed more support for recreational and art activities, with reports that a lot of services that closed during the COVID-19 pandemic had not reopened.

6. Findings from stakeholder engagement sessions

In addition to gathering information by email and through the call for evidence surveys, a number of stakeholder engagement sessions were held to gather further evidence about people’s views and experiences of health, social care, education, housing and other local authority services.

This involved attending several online and in-person discussions with stakeholders, including individuals with lived experience of Down syndrome and other genetic conditions and/or a learning disability, as well as organisations who support and represent them.

These sessions also presented a further opportunity to explore what people would like to see considered in the guidance, as well as examples of general best practice across public services.

Summaries of the findings from these sessions are described below.

Health

A range of themes relating to health services emerged across the stakeholder sessions.

Stakeholders reported inconsistent healthcare provision across the country, with some people with Down syndrome having to travel far for specialist services, such as heart surgery. Stakeholders reported that better access to services is needed alongside more information about the support available.

Stakeholders suggested that a better understanding of Down syndrome is needed, including specialist staff training. They highlighted the importance of reasonable adjustments, such as longer appointment times. There were suggestions of a healthcare co-ordinator for people with Down syndrome so that there is one contact for all needs.

Stakeholders also said there was inconsistency in the way that parents were told about the diagnosis of Down syndrome and suggested better information is required once a diagnosis is given.

Other areas raised included concerns about diagnostic overshadowing and the effectiveness of transition from children’s to adults’ services and how this could affect development, as well as the role of early intervention in helping to avoid health issues in the future.

Some stakeholders mentioned the legacy of the COVID-19 pandemic and how this has resulted in some people with Down syndrome feeling lonely and isolated.

For other genetic conditions, stakeholders reported needing to explain rare conditions to health professionals at many appointments due to limited knowledge and a lack of medical protocol for rare conditions. There were also reports that direct referral pathways do not exist for people with rare conditions.

Social care

Stakeholders suggested that there needs to be more information on social care services and that there should be an automatic assignment of social care support for people with Down syndrome. For example, a disability social worker could be automatically assigned to every individual with Down syndrome. It was also raised that greater access to specialist services is required so that the support provided is suitable to the individual.

Similarly to the survey responses, stakeholders highlighted the need for comprehensive social care assessments that are suited to the needs of the individual. It was raised that such assessments are often disappointing for families and lack the necessary clarity to be adequately effective.

Stakeholders highlighted that more sufficient, flexible funding is needed to improve social care support for people with Down syndrome. Stakeholders reported difficulty accessing direct payments and that there is little support provided on how to spend the money when it is received. Some stakeholders reported that social care funding does not take full account of their financial needs - for example, money required for essentials such as clothes. It was also suggested that some families were hesitant to reveal positive progress in their child’s development as they felt this could lead to a reduction in social care funding, which was perceived as punitive by some stakeholders.

Stakeholders also described the need for more support for families of people with Down syndrome. They highlighted a notable decline in the provision of respite care for families in recent years, resulting in support often only being provided at crisis point. Stakeholders suggested that each county would benefit from a Down syndrome champion to liaise with families and provide clear information on what support is available locally.

Similarly, stakeholders suggested that there needs to be greater support for the social care workforce, such as better training and clear career paths. They stated that a lack of workforce support can have a negative impact on the consistency and quality of social care support provided to people with Down syndrome.

Stakeholders discussed the lack of transition pathways from children’s to adults’ social care services. Stakeholders suggested that this could be improved by proactively contacting people with Down syndrome when they turn 18 years old.

In addition, stakeholders raised the need to promote higher expectations of the potential achievements of people with Down syndrome among social workers. It was suggested that this would support individuals in achieving independence and reduce the overall costs of the individual’s lifetime social care support needs.

Housing

Stakeholders reported that there should be more housing options available, with flexibility in provision. For example, stakeholders noted the importance of having access to suitable housing.

Stakeholders also highlighted the importance of improving independent living options for people with Down syndrome. They noted that the right support could:

• reduce reliance on families
• help build confidence and independence for people with Down syndrome
• reduce the need for parents to justify why their child wants to live independently when they become an adult

Stakeholders also emphasised the importance of workforce training on the housing needs of people with Down syndrome. Stakeholders reported that some social workers were not aware of the local housing provision in their area, which could exacerbate issues.

In addition, some stakeholders felt that more funding for housing support was needed.

Education and children’s social care

Many themes relating to education and children’s social care services emerged throughout the engagement sessions.

As raised by survey respondents, stakeholders noted the need to educate people about Down syndrome, including educators, commissioners and other school children who are studying alongside children with Down syndrome. For example, some stakeholders suggested that specialist training for teachers is required to raise awareness and understanding of the needs profile of people with Down syndrome.

Stakeholders stressed the importance of having EHC plans in place that reflect the needs of the person with Down syndrome and for these to be followed by schools and colleges. Some stakeholders reported that they found the EHC plan process to be too bureaucratic and that the quality of EHC plans is not consistent.

Stakeholders highlighted the importance of reasonable adjustments in education, especially in communication styles. Stakeholders also noted that schools and colleges should be aspirational for people with Down syndrome and provide equal access to opportunities, such as further education and employment.

Some stakeholders also mentioned how families and carers have faced challenges accessing services such as SLT and appropriate social care and education, which has meant they have had to go through the tribunal process to secure the support they require.

The benefits of social interactions when attending mainstream schools with specialist units attached were also highlighted.

General best practice

Stakeholders raised that not everyone is aware of what benefits they are entitled to and suggested that there needs to be increased support to help manage this process, which is perceived as being overly complicated. It was highlighted that some people who receive benefits would lose them as a result of working more than the 16-hours-a-week limit, with stakeholders noting that this can disincentivise work.

Some stakeholders suggested that more could be done to support transitions into adulthood, such as setting up adulthood teams that can work with people throughout their lives to help them, for example, understand legal and assessment processes.

Stakeholders also highlighted the importance of:

• employment opportunities for people with Down syndrome
• workplace advocates
• better careers advice

Next steps

DHSC has considered the views raised in response to the Down Syndrome Act 2022 guidance: call for evidence regarding areas to include in the draft statutory guidance.

DHSC would like to invite people to take part in the full Down Syndrome Act 2022 draft statutory guidance consultation to widely test the draft statutory guidance under the Down Syndrome Act ahead of its final publication.

The consultation will set out what DHSC is proposing for the guidance and will be open to all interested individuals and groups.