Research and analysis

Disabled people's lived experience of housing in the UK: an evidence review

Published 29 January 2026

Laura Lane, Bert Provan, London School of Economics (LSE)
March 2024

Acknowledgements: We are grateful for the advice and guidance provided by Christina McGill of Habinteg Housing in the preparation of this report. 

Executive summary

This report provides an overview of the main evidence and messages around the lived experience of disabled people in the UK in relation to housing. The evidence comes from a systematic review of evidence on the lived experience of disabled people in the UK. It was conducted by the Centre for Disability Studies at the University of Leeds in collaboration with Disability Rights UK between 2010 and 2021. This report presents a summary of that literature on the topic of housing. For each theme, it summarises the evidence and outlines the findings for policy makers and other people involved in providing appropriate housing for disabled people. 

The focus of this report is primarily to identify the experiences of disabled people which are documented in the literature. It is not to identify and document administrative or statistical data. This review focuses on lived experience research. This gives us a better, but far from complete, understanding of the issues faced by disabled people and people with health conditions in relation to their experience of housing. Evidence or opinions expressed reflect the evidence and opinions reported in the underlying source reports, not the views of the authors of this summary report. 

Methodology 

There were 53 sources found during the review which were relevant to the theme of housing. Research that was not about housing or did not cover the lived experience of disabled people such as administrative or statistical evidence was excluded. The evidence was reviewed and themes and subthemes were identified through a thematic analysis. 

As the review focuses on secondary lived experience research, there are some limitations including small sample sizes and limited peer review. Lived experience research gives us a better, but far from complete, understanding of the issues faced by disabled people and people with health conditions in relation to housing. 

Summary of findings 

The findings of this qualitative literature review show the following.

Being able to have a suitable home which meets their needs is something that disabled people see as having the potential to greatly improve their wellbeing, independence, and feelings of safety and security. It is also their right under national and international legislation on human rights.

Many disabled people can find that the professionals who are supposed to assist them in finding homes which meet their needs do not actually prioritise their needs and wishes. 

This tension between disabled people’s needs and professional views can be based on a failure to explore in detail what those needs are. Disabled people can have very different types of needs depending on the nature of their impairment. Professionals (and legislators) need to be prepared to explore needs which can be surprising or missed by some of the medicalised lists or cost-benefit considerations in the current guidance issued to professionals.

It is important to consider the emotional and social impact of what is needed in a suitable home, as described by disabled people themselves. These emotional and social aspects can be as important as the physical aspects of aids and adaptations to the buildings.

Co-production of homes suitable for disabled people is a major positive approach flagged in the sources. A full account of the communication requirements that people with mental health conditions, learning difficulties, or autism may need will likely require specific co-production approaches which are tailored to the needs of these groups of people.

Some disabled people experience other disadvantages, including poverty, discrimination, and difficulty engaging with services which make their housing situation worse. This can affect how housing providers and local authorities make arrangements to find suitable housing for them.

There is a lack of representation of disabled people in many of the bodies responsible for planning the services which are in place to ensure that disabled people can get the homes they need.

There is specific English legislation and financial provision to provide suitable housing to meet the needs of disabled people, and link them to available offers of housing. Not listening to what disabled people actually need can lead to a failure to fulfil these obligations, and waste public funds on inappropriate adaptations or aids.

There is also considerable evidence of good practice and extensive literature on informed design principles about how to provide suitable housing, and awareness of the need to co-produce better homes. Several examples of this good practice are set out in this report. 

1. Introduction, political and administrative context, and methodology

Introduction and methodology

This report is based on a review of literature on the lived experience of disabled people by the University of Leeds and Disability Rights UK. It summarises the findings and provides important messages around the lived experience and voices of disabled people in relation to housing. 

The research questions for this review are:

• What are disabled people’s experiences of the UK housing market in general?
• What are disabled people’s experiences of making adaptations to their living environment?
• What barriers do disabled people experience when choosing and living in accessible housing, and how do these barriers relate to disabled people’s independent living and choice of where and with whom they live?
• What are the impacts of these barriers on disabled people’s feelings of inclusion in the society?
• What inclusive housing schemes, designs, adaptations, and services can improve independent living and inclusion in the community, and to prevent isolation or segregation from the community?

The methodology of this report was to first prepare a short section of the political and administrative context, including setting out the current equality rights of disabled people in relation to their access to suitable housing. This allowed us to identify where the experiences of disabled people were to be found in that literature. Their voices were sometimes presented directly, and we have included suitable direct quotes where they provide clear information about disabled people’s views on their housing needs and the services they receive from housing providers and housing support workers. 

Some of the literature included indirect information on the voices of disabled people. This could be in the form of surveys of their views, which were presented in summary form (but also sometimes with short quotes to provide the direct voices of the disabled people involved). This indirect information could include the views of the families, carers, professional support workers, and others directly involved in the home life of disabled people. It also sometimes included the views of the local authorities or housing providers where they had taken account of the views of disabled people to develop better services, for example principles to provide more opportunities for disabled people to have a voice in the direct co-production of their own homes, or the wider local planning of housing services for disabled people. This indirect evidence about the experiences of disabled people has been included in the report where it was clearly based on underlying evidence from them, and where it provided clear and persuasive evidence of how to improve housing services for them. 

Wider administrative or statistical evidence about housing provision for disabled people has not been included. As this thematic review focuses on lived experience research, it is important to note that with that comes a number of limitations including small sample sizes and limited peer review.

The structure of the report is an initial section on the political, administrative, and equalities context of housing for disabled people, followed by sections on each of the main themes set out above. Each section includes an introduction to the theme and a short summary of the main points evidenced in the sources identified in the University of Leeds’s review. We then set out the relevant experiences of disabled people in each of the documents, followed by a short bullet point summary of the main messages. Annex One provides a summary presentation of all of these messages. 

2. Political and administrative context

The rights of disabled people to live independently and in the community are recognised in the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), Article 19.^{[footnote 1]} This convention sets out the fundamental human rights of disabled people and in Article 19 the parties to the convention plan to ensure that:

1. Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.
2. Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.
3. Community services and facilities for the general population are available on an equal basis to persons with disabilities and are responsive to their needs.

In Great Britain, the Equality Act (2010) sets out the definition of a disabled person, and their rights to equal treatment under the Act.^{[footnote 2]} This includes the right for disabled people to receive equal treatment when buying or renting a property. The Act requires all public bodies to publish equality objectives it thinks it should achieve to meet their equality duty; this is the Public Sector Equality Duty. In the case of housing, the relevant public body is the Regulator of Social Housing who have published the equalities objectives for social housing.^{[footnote 3]} Social housing is housing provided by local authorities or a range of registered social landlords (often known as Housing Associations) to meet housing needs of certain groups of people for rented and other housing. This includes specially designed housing to meet the needs of disabled people, and also sometimes provides specialist or care services to enable them to live independently. Private landlords and builders and sellers of owner-occupied housing are under a more general obligation in the Act not to discriminate against disabled people when they are buying or renting property. The Equalities and Human Rights Commission, which is the Act’s regulator, has published an accessible guide to rights for disabled people in relation to social housing.^{[footnote 4]}

In addressing how to ensure that appropriate and adapted homes can be provided to fulfil these rights, local authorities are required to follow legislative guidance. This includes information on the recommended and mandatory design principles and related building regulations which should apply to these homes. It also provides guidance on matching available homes to people in need of those homes, in both the social renting and private markets. Since 2020, the government has been consulting on changes to the guidance to better meet the needs of disabled people, but following the conclusion of the first stage of this process, consultation on some aspects of changes is still underway. More details of these standards and how they apply is provided at the start of relevant sections in the main body of this report below. There are also financial provisions which provide funding for specific adaptations to meet needs, which are also detailed in the sections below.

Additional guidance on creating more inclusive housing has been produced by the Royal Institute of British Architects.^{[footnote 5]} This ‘Inclusive Design Overlay’ followed the launch of their Inclusion Charter, which committed them to embedding inclusive design in all projects, contributing to the development of inclusive environments. It outlines design tasks which can equip built environment professionals to embed inclusive design into project briefs and delivery, using an industry coordinated guidance framework.

The NHS has also published guidance to assist people with impairments to find suitable adaptations and equipment for their homes. It includes information on finding care assistance to help them live independently.^{[footnote 6]} 

Local authorities and housing associations provide social housing to meet disabled people’s needs, as noted above. Major housing associations providing accessible housing include:

• Habinteg 
• Aspire 
• Ability

There is also government guidance available to home ownership schemes run by third parties through the Home Ownership for people with Long-Term Disabilities (HOLD) scheme.^{[footnote 7]}  

More general and comprehensive guidance and advice on housing for people with care and support needs has also been published by the housing advice agency Shelter.^{[footnote 8]} 

Equality and Human Rights Commission reviews of disability and housing

In 2018, the Equality and Human Rights Commission (EHRC) published 4 reports on ‘Britain’s hidden crisis’ in relation to housing provision for disabled people. One of these reports covers Great Britain^{[footnote 9]} one focuses on Scotland,^{[footnote 10]} and one on Wales.^{[footnote 11]} A final more general report provides an analysis of 51 interviews with disabled people in England, Scotland, and Wales around their housing experiences.^{[footnote 12]} The first 3 reports present analysis and recommendations in relation to 4 main topics: 

• building more accessible and adaptable homes 
• improving the installation of home adaptations 
• matching homes to the people who need them 
• supporting people to help them live independently

The EHRC reports include both administrative details of provision and services, and also a range of views and quotes from disabled people, carers, occupational therapists, and family members whose lives are all impacted by inaccessible housing.

The reports call for:

• changes to the current planning system so that local authorities can ensure that more accessible homes are being built 
• better data and information in local authorities to match accessible properties to people who need them 
• less bureaucracy to speed up essential adaptations and 
• better support services for disabled people, particularly social housing tenants

The EHRC argues that the changes that they are calling for would be cost effective and save public expenditure. This includes enabling hospitals to discharge patients as quickly as possible where they currently cannot due to inadequate appropriate housing or reduced social care expenditure and reducing the costs of retrofitting homes with adaptations by making them adaptable from day one. They also call for disabled people seeking accessible social housing to be better informed of their rights to decent housing, and where to go if these are breached.

The EHRC reports provide an overview and introduction to the other literature which is explored in more detail in the later sections of this report. In particular our review of the literature as a whole further explains what is meant by some of the terms in the 4 EHRC themes above (such as how the planning system works, what “adaptations” are, and how local authorities can fail to adequately “match” accessible properties to people who need them). 

What are the obligations on local authorities and housing providers to meet disabled people’s needs? 

There are specific planning, building, and funding requirements put on local authorities, housing providers, and housing support providers to address the housing needs of disabled people. 

Planning requirements

Local authorities are required to assess the need for new build housing for disabled people and make provision in their local plans to provide for their needs. 

Building regulations

There are laws which set out the minimum standards which need to be met in relation to providing homes which meet the needs of disabled people. These define a wide range of issues including, for example, the dimensions of doors needed to make a home suitable for a wheelchair user, the height and position of electric sockets and handrails, the width and incline of external ramps into homes, and so on. 

Funding of improvements to existing homes

Grants and loans are available to eligible disabled people to make changes to their homes to meet their needs, as set out in more detail below.

Providing homes to disabled people who are homeless

There are also obligations to provide or arrange for the provision of suitable homes for homeless disabled people.

These obligations form an important context for the points made in relation to many of the sources we report on below. Many of the documents are about how these obligations are put into practice, and the difficulties that can be encountered by disabled people in having their voices heard and their needs fully met in line with the law and guidance in place. 

3. Housing and design standards

In this section, we look at the more general issue of the design of homes for disabled people.

Design standards for people with visual impairments

The 2018 report ‘Experiencing visual impairment in a lifetime home: an interpretative phenomenological inquiry’, by Rooney, Hadjri and others^{[footnote 13]} is based on interviews with 6 visually impaired people living in homes designed to meet their needs in Northern Ireland. It considers their views on how far their impairment needs are actually met, particularly in relation to living with a visual impairment, the design of the home, and how they use coping strategies as a way to work round difficulties in the design of their homes. Residents often see their homes as important places of security and comfort, although they also highlight the need for greater consideration of specific individual needs. 

Some specific clear views and issues from disabled people’s perspectives are presented below:

Positive aspects of participant’s homes include simple design, level access, and having no steps.

Location is fundamental to wellbeing in supporting independence and preventing isolation, although some occupants feel they have a level of control at home and are more likely to encounter unexpected hazards outside their home.

As someone’s needs change, they experience a new need for support, and some expressed that moving home is stressful and they therefore want to stay in their current home but with additional adaptations to meet their new requirements.

Valued aspects of adapted homes for occupants include sliding doors, carports, and higher switches. In addition, views from residences to connect with the outside world are important for partially sighted people with less mobility. There is also a need for the provision of views of natural features, dynamic urban scenes, and reasonable views to prevent isolation.

Negative aspects of their homes include poor access outside the home, with ramps built to the defined minimum standards but which are inadequate for individual needs. The evidence also shows that kitchen design and lower windows are not useful for someone with a visual impairment. However, participants viewed lower-level smoke alarms as beneficial, indicating again the benefits of designing to meet individual needs.

Good quality lighting is particularly important whatever the extent of their visual impairment.

There is a need for greater consultation between users and designers, such as around the use of colour and the implementation of underfloor heating to eliminate the need for obstructive heaters.

Participants respond to negative affordances such as clutter by adapting their homes to minimise negative effects. They also use sound and tactile stickers to adapt homes. Occupants also study new and unfamiliar environments by using touch, developing mind maps and memorising where obstacles are located.

The main messages from this report are:

People with visual impairments express views about the design of their homes which are often different from the views which non-visually impaired professionals may have. User views are often not likely to be anticipated by people who have no visual impairments, such as the importance of light and colour.

Physical design of adaptations needs more understanding of the individual nature of the person living in their home – the visual impairment may present new and different issues to address which other disabled people do not experience, such as about “clutter” and how touch is used to get around.

It is important to plan homes around enabling more social and community contact as a guiding principle of design and adaptations in these homes.

A 2012 report by Lewis and Torrington, ‘Extra-care housing for people with sight loss: Lighting and design’^{[footnote 14]} on housing for people with visual impairments considered United Kingdom-based extra care housing. It looks at whether the current extra care housing design guidance for people with visual impairments meets the needs of disabled people. A total of 41 apartments/bungalows in 11 schemes were surveyed and interviews were conducted with the residents. A section of the article is a technical assessment of light levels and types of illumination in comparison with the design guidance. There are also resident voices included from in-depth interviews. 

Among the issues raised by residents was the importance of having control over their lighting. 

“I’ve always loved dimmer switches . . .Some days . . . I want everything on up bright, other times when I’ve got a bit of an eye ache and I want to, want to sit down and, you know, rest my eyes I will have the lighting right down dim.’ (Man , aged 50 years)”^{[footnote 15]}

Having more daylight was important, as was a view on the outside world:

“Well just to know that life is there and that life’s going on and that it’s a difference between day time and night time. Yes you can tell . . . I can tell the heat or the coldness of the wind. That combined with the sunlight or lack of it makes a big difference to sort of general awareness of things.’ (Man , aged 88 years)”

Participants with limited sight found the use of contrasting colours important, because these colour schemes made it easier to understand where internal spaces started and finished.

“I like the bright, I’ve got like a terra, bright terracotta colouring band around my, on the tiles around my bathroom, yeah, I, I like that because I can see the boundaries of the, of the room.’ (Man, aged 50 years)”

The main messages from this study are:

The authors conclude that the design guidance is essentially sound, although there is scope for additional guidance. 

Daylight and sunlight are important to people with sight loss as it can create a greater sense of connection to the world, which design guidance should reflect more.

Contrasting colours can help people navigate around the buildings and use their flats.

Design standards for people with “functional limitations”

A 2016 systematic review of accessible home environments for disabled people^{[footnote 16]} by Cho, MacLachlan, Clarke and Mannan titled: ‘Accessible Home Environments for People with Functional Limitations: A Systematic Review’ provides information from a literature review but has limited information on disabled people’s experiences. Their review sets out at the start that disability is not an attribute of a person, rather it is the outcome of the interaction between bodily impairments, health conditions, and contextual factors. How society is organised, for instance in terms of architectural accessibility, affects whether someone with impairments is “disabled” or not which is also known as the social model of disability.^{[footnote 17]}

It goes on, however, to set out that in the literature review the authors have undertaken, there is considerable evidence around the difficulties people have in functioning. This includes difficulties around whether a person can manage Activities of Daily Living (ADL) such as bathing, dressing, transferring, toileting and feeding, and other types of self-care. It also looks at difficulties in “Instrumental Activities of Daily Living” (IADL), which include preparing meals, housekeeping, taking medications, shopping, managing finances, travelling, using the telephone, and activities that are important to be able to live independently in the community. That is, it does not seem to have a major focus on wellbeing and the user views of what types of design features need to be provided. 

The main messages from this study are:

This review pays limited attention to the views of disabled people or to unpacking the issues of wellbeing, wider social value and impact of good design and adaptations. It is mainly concerned with looking at how different impairments specifically make elements of self-care and aspects of independent living in the community difficult. 

Impact of poor design standards on people affected by mental health issues 

Diggle, Butler, Musgrove and Ward’s 2017 report, ‘Brick by brick - A review of mental health and housing’^{[footnote 18]} was commissioned by Mind, the organisation working towards the provision of better mental health services. Its focus is on exploring the relationship between poor housing conditions and poor mental health. It presents a review of 200 articles, as well as reporting on 21 in-depth interviews with people who have experienced a wide range of mental health problems and different housing situations. The National Survivor User Network (NSUN) helped to refine the scope and research questions used in this project. A number of the research team members brought their own personal experiences to the project. Finally, a Research Advisory Group made up of 12 people with experience of mental health problems and a range of different housing situations helped to analyse the emerging findings.

The research found that:  

“A combination of physical and social factors drive the impact of housing on mental health. These include:

• the physical condition of the property 
• overcrowding 
• the local environment 
• affordability of housing costs 
• physical security 
• social connections with neighbours 
• the impact of housing on identity and self-esteem

While housing can have positive and negative effects on mental health, poor housing detracts from mental health more than good housing improves it.” 

The report states that one in 5 adults in England report that housing problems have had a negative impact on their mental health in the last 5 years. GPs also identify housing issues as a common contributing factor to their patients’ poor mental health. Poor housing conditions are also a strong predictor of general life satisfaction. Problems with the physical condition of a property made people feel insecure and much less hopeful about the future. 

User voices on the impact of poor housing on mental health include:

Physical condition of the property

Poor quality housing can also increase social isolation and low self-esteem. One interviewee commented:

“I did all the decoration myself. It [the flat] was truly grimy when I moved in. I actually had to pay for all the materials from my graduate loan…I’d been given this council accommodation and I didn’t want to complain. To be honest, I didn’t feel worthy of it. None of my friends had flats… Also, mental health problems make it harder to complain – you have other things to think about.”

Local environment

People who live in neighbourhoods that have plenty of green space have better mental and physical health, regardless of other socioeconomic factors. One study showed that individuals who moved to greener areas had significantly better mental health in the 3 years after moving. One interviewee commented:

“There’s [name of park], you know, just a second away… I think having green space nearby is important to me because I run every day. I mean, I’m trying not to do it obsessively because of the eating disorders, but aside from them, it gives me serotonin and it just makes things a bit more manageable and it’s a bit of clear headspace. It’s kind of like my medication, so it’s important to have some parks nearby.”

Affordability of rent or mortgage

There is strong evidence that unaffordable accommodation has a negative effect on mental health and has a bigger impact than general financial pressures or debt. A 2017 nationally representative survey^{[footnote 19]} indicated that one in 5 adults (21%) said a housing issue had negatively impacted upon their mental health in the last 5 years, and half of this group said the main issue was ‘affording the rent/ mortgage’. People with mental health problems are nearly 3 times more likely to report being in debt than the general population. They are also more likely to be in rent arrears and more likely to be evicted as a result.

“I am aware that I was not the most effective communicator verbally, as my mental health and depression suffers immensely when faced with financial conflict, I find it hard to be assertive… I shut down and bury myself.”

It was also difficult for some people with mental health needs to apply for housing-related benefits, because of the complexity of the process.

“Discretionary Housing Payments cover the shortfall between the housing benefit and the rent… It has to be renewed every 6 months, which makes things a bit difficult. I have to go through the process of writing in…. I find it a bit distressing going through that process.”

And another noted:

“Sometimes I make complaints about repairs or something else. Half the time no-one answers the number, the other half they don’t know the answer. But if you do anything wrong, like are in arrears by £15, they are quick to come after you…. They should know that you have mental health problems. They need to take that into account.”

Physical security

Housing should offer protection to residents, who should feel able to control who enters their home and what takes place inside. If someone is unable to control what happens in their home, this can lead to feelings of low self-efficacy, such as feeling unable to change your circumstances, and disempowerment. Many people with mental health problems live in houses in multiple occupation (HMOs) where there is significantly less control compared with other types of housing. 

One resident commented: 

“There were quite a lot of pressures that you get, because when you’re living with people that are also unwell, sometimes their problems can become yours as well. So it was good to have some independence when I moved.”

One person described the impact of secure and stable housing:

“Once I was in an environment where I felt safe and felt as if I could make progress and… had that assurance or that support if I ever needed it, and I had people who believed in me…belief is a big thing, you know?”

Social connections with neighbours

If people have strong, positive social ties within their neighbourhood, this appears to reduce their likelihood of experiencing depression and anxiety. Neighbours can provide a valuable source of informal social support:

“Now, I can talk to some people, because I live in shared accommodation and just by talking to someone and finding out the underlying problem, you make them feel a lot better, rather than taking a tablet or drinking alcohol, and just having a bit of time for that person”

Impact of housing on identity and self-esteem

Housing is widely seen as a source of status and identity. This means that housing problems can take on a wider meaning – reflecting ‘failure’ to conform to society’s standards – and have a negative impact on mental health.

“It knocked my confidence because I kept thinking that I’m not capable of doing any better than living in that filthy bedsit. It was really tough, and I think that added to my issues.” 

The general psychological effects of poor housing can be partially attributed to the impact on people’s sense of self-esteem, empowerment/self-efficacy, and sense of security.

“Before I’d experienced this whole stress…I wouldn’t have thought that much about the impact of housing….. I think having your own space and being able to create an identity, because there is that risk of when you have been quite severely mentally ill for a while that being ill becomes your identity and that’s really depressing.”

The main messages from this report are: 

It is excellent practice to engage people with direct experience of impairments in how a report of this kind is planned and analysed. This approach builds on their views and insights at the start, and provides the voices of disabled people in the interpretation of the findings, drawing up of conclusions and choice of evidence to cite.

Poor housing standards and conditions have clearly evidenced negative impacts on people who experience mental health issues. This includes living in housing which is overcrowded, unaffordable, insecure, of poor quality, and located in a poor environment.

These mental health impacts include losing self-esteem and a sense of identity, feelings of loss of control, feelings of failure, stress and depression.

Design standards for adults with autism

‘Designing living environments with adults with autism’, a 2014 article by Lowe, Gaudion, McGinley, and Kew^{[footnote 20]} explores how a people-centred, design-led approach to the different needs and aspirations of autistic people  could help improve the design and use of space, objects, and activities for individuals in their own homes. 

Autistic people may find it difficult to interpret, perceive or regulate sensory information around themselves, and may be over- or under-sensitive to particular kinds of sensory information. For example, some autistic people  experience adverse reactions to the presence or absence of certain textures, visual details, colours, noises and aromas. They can find it difficult to focus and concentrate on certain activities as they become distracted or fixated with the sensory information that surrounds them. In the kitchen, a person may become distracted by the rumble of the dishwasher, the texture of the flour on their hand, the sound of the radio, people passing by, or the various smells that are present.

The project developed a set of 72 cards to help understand individual sensory preferences. Each card showed a distinct sensory experience which was both described in simple words and illustrated by photographed images. The cards acted as visual prompts to help the individual express whether they liked, disliked or was neutral about the subject of each card. This activity aimed to involve autistic adults in the sensory profiling as active participants rather than relying on family members or support staff to express preferences on their behalf.

Once categorised into groups of likes, dislikes and neutrals, the cards enabled a visual sensory profile of the participant that could be used to make decisions about both the manner in which they were supported and their interior design choices. Using this information, simple changes could be made to the home environment to improve everyday experiences. For example, in communal spaces, specifying seats that provided different seating positions and could be repositioned to create smaller seating areas might have encouraged the individual in question to participate in social activities with other people.

The report notes the heterogeneous nature of autism and the consequent impossibility of creating a generic set of guidelines and design outputs. It sets out 4 design theme sections providing recommendations around:

• growth and development
• triggers 
• robustness
• support tools

Commenting on the work done with the residents, the researchers and support staff observed that in general, residents showed reduced levels of anxiety and increased levels of concentration, social interaction and communication when involved in the design activities. Support staff say they have learned more about the person they support and became more motivated and engaged in providing structured, people-centred activities.

The overall conclusion of the report is that: 

“Design is a universal process of creation that puts the person at its heart and forms a solution around them. If applied well it can bring joy and meaning to life and solve previously insurmountable problems. This is true whether it is applied to the creation of new buildings, computers, telephones, services or indeed living environments for adults with autism.”

The main messages of this report are:

People with certain types of impairment need special and different types of assistance to enable them to be fully involved in planning how their home is designed and adapted to their needs. This is particularly important for people who are neurodivergent. 

The report provides considerable detail on how autistic adults were actively involved in designing improvements to their homes and living environment, which enabled them to actively co-produce changes, increasing  their independence and satisfaction with their homes.

Design standards for people with learning disabilities

Research by the National Development Team for Inclusion was designed to seek the perspective of people with learning disabilities living in residential or supported care settings. The 2019^{[footnote 21]} report and summary document evidence findings from the research. In total, 107 people took part, including on occasion, the families of disabled people not capable of giving informed consent to be interviewed.

Housing arrangements

Having the ability to make the space their own, for example being able to decorate and having space outside of their bedroom that was ‘theirs’ was valued. People with learning disabilities also valued being in charge of their day-to-day life and being able to choose what they did and when they did it, which gave people a sense of freedom.

“Freedom….I can go out when I want and come in when I want and watch what I want to see without being told what not to watch and stuff and people coming and saying oh no it’s my turn to watch it now….I can cook when I want and have it how I want’. (Supported Living resident)”

People valued living close to people they know and having easy access to local facilities.

“Good location. Can go on my bike to places and walk places. I go to the church, I go to different churches all the time.”

The people they lived with and the support staff who assisted them played a big role in whether someone liked their home or not.

“They [the staff] can’t actually do anything about it as such…I am ok but sometimes I am like ‘please do something about this’ but then they can’t so it is the way it is. Sometimes you have to put up with people you don’t like sometimes.” 

Some people were unhappy with some physical aspects of their home, such as the size or location of the property. Sometimes adaptations that people needed had not been made, and some people in supported living had to wait a long time for their landlord to make repairs.

“He needs a specialist environment and trying to get that with the set-up can prove difficult. I think in a registered service it would just be done and it would be perfect for him… there are massive triggers for him everywhere in that house….” Family member of participant with learning disability. 

Choice, privacy, and housing

Some people had moved into their current home for reactive reasons, meaning that they moved in response to an issue with their previous home such as a sudden change in support needs, difficulties with their housemates, or the property being in poor condition. For other people, the move was proactive and associated with personal progression, such as moving from a shared home into a self-contained property.

“I had issues with the area due to harassment and abusive comments…we got threatened once, me and my partner, so due to my mental health it wasn’t an ideal place.”

Many people found the process of moving to be difficult.

“At the beginning he struggled with the move due to it being so sudden, he protested with not eating food or only eating certain foods, his behaviour was very challenging. (RC with severe needs, through a proxy)”

Some things that helped to ease this process were moving at the person’s own pace, time to build relationships with housemates and staff, drawing on emotional support from others and moving to a familiar location.

“When they moved me in here, they did it slowly, so first of all I had a couple of day visits and then, this is what I requested because I don’t do change very well so if something changes and I am not used to something I like to take my sweet time and do it in my own time.”

A further section provided service user voices around community engagement and contacts with family and friends. People spoke about the importance of belonging. They valued being part of their local community and many people were proud of their roles within their families, friendship groups or local community. Outside of family, networks such as church, football, and neighbours cropped up as ways in which people felt connected to their community and fostered a sense of belonging. 

“One friend who goes down to the football and used to work here. I meet him down the football quite a lot….he works with the St Johns there…I stand by him.” 

Location of their housing and opportunities to attend structured activities were 2 factors which facilitated the building and maintenance of relationships. People were often closest to friends who lived locally, allowing them to meet up easily.

The main messages from this report are:

These residents of residential and supported housing very much valued having their own private living space over which they had full control and could do what they liked. This improved their sense of freedom and independence.

Living with people they could get along with, and working with support staff they liked, was important to people with learning disabilities’ sense of wellbeing.

The process of moving into this accommodation could be difficult, particularly if it was not an active choice but driven by difficulties where they previously lived. Time and support to settle in was important.

They valued being part of their local community and many people were proud of their roles within their families, friendship groups or local community. These social and community contacts greatly improved their wellbeing.

Design standards for extra care housing

A report by Barnes and others Does the design of extra-care housing meet the needs of the residents? A focus group study^{[footnote 22]} explores whether the design of extra care housing meets residents’ needs, based on focus groups with older people in residential care. Extra care housing is usually a group of self-contained apartments or bungalows designed to support older people, offering appropriate care provision for people in their homes with 24-hour care support available. They are generally located in the community and residents can easily go to local leisure and recreation facilities, hairdressers, cafes, restaurants and shops, though some are more isolated and have these facilities on site. 

Design guidance for these extra care homes can include standards around:

• comfort and control 
• dignity
• personal care
• personal realisation
• socialising within the scheme 
• connection with wider community 

More specific guidance for older residents and those with higher support needs can include:

• accessibility
• physical support
• sensory support
• dementia support 
• safety, and security  

The authors note a lack of consultation with residents around the appropriateness of this design guidance. They therefore held 5 focus groups in extra care facilities to explore the views of residents and their relatives. There was an emphasis on recruiting people with physical impairments and/or sensory impairments, such as sight loss. The analysis of these discussions focused on 2 main areas: 

• aspects of design that support what residents feel are essential to provide a good quality of life 
• detailed design issues that affect the usability of the building in terms of supporting the physical, sensory and cognitive changes that many people experience in older age

Having accessible external areas helped residents to connect with the outside world. Residents also like views of the scheme garden from their apartments. Most people thought the gardens and courtyards were well-maintained and easy to access. Several of the schemes had a greenhouse which residents were free to use, and some residents had a personal patch of garden space.

Independent living was made more difficult by features of the building that did not take account of reduced strength, flexibility and dexterity experienced by older people. For example, some of the thresholds in the common parts, and thick carpets, were difficult for wheelchair users with limited strength to push themselves over. 

Barriers to independence included poor kitchen design and problems in washing and drying clothes. There were more criticisms of the kitchens than any other aspect of the living units. The main issues concerned the difficulty older people have in reaching and bending, making high, low or deep spaces inaccessible. Reaching over worktops was difficult for many older people: they found it impossible to reach window fasteners where the window was located behind a worktop. People did not like having to take their dirty laundry through the common living areas. Drying clothes was a problem in all the schemes. 

Many of the residents in each focus group commented on the feelings of support and community spirit within the schemes, including the daily coffee mornings and similar activities. Nevertheless, it was apparent that some residents were reliant on carers who were not available to take them to and from evening social events. Some residents felt that wheelchair users were discriminated against in relation to scheme activities. 

Extra care buildings were generally too hot, too brightly lit at night and poorly ventilated.

The overall conclusions of this report were that the design of extra-care housing meets the needs of residents who are relatively fit and healthy. It was less suitable for residents with higher physical and cognitive needs, arguably the very type of resident that the schemes are intended to accommodate. Those residents could find themselves being marginalised from the extra-care lifestyle. Design across the age and dependency range is important in meeting the needs of residents in extra-care housing and, as people grow older, they are likely to spend more time in their home so will need more flexible spaces that are safe and secure, easy to maintain, attractive, and close to shops and facilities. Issues relating to extra-care are just as pertinent in all social housing for older people.

The main messages from this report are:

Talking to disabled people around design is essential to identify where wellbeing and independence can be enhanced in care homes and similar facilities. Regular in-depth discussions with residents can highlight otherwise unrecognised issues which may in fact be able to be addressed immediately, or if not then, in future design.

The discussions in the study identified the fact that needs can change over time as people become older or when progressive impairments present increasing difficulties. These changes and increasing needs have to be taken into account on a continuous basis.

Darton, Baumker, Callaghan and Netten’s 2011 report ‘Improving housing with care choices for older people: the PSSRU evaluation of extra care housing’^{[footnote 23]} into the extra care housing for older people focuses on extra care schemes supported through Department of Health and Social Care capital funding since 2004. It examined whether extra care housing provides many people with a better alternative to that offered by more intensive types of residential care which are less focused on independent living. It includes the results of a detailed survey of 949 people who moved into the schemes within 6 months of opening. The overall report indicated that outcomes were generally very positive, with most people reporting a good quality of life. A year after moving in most residents also enjoyed a good social life, valued the social activities and events on offer, and had made new friends.

The need for adaptations was an important incentive to move into extra care housing for about half of the residents with care needs. Other incentives were problems with managing their previous home and various social issues related to their previous living circumstances. 

Positive reasons for moving to this form of housing included: 

• tenancy rights or having your own front door 
• flexible on-site care and support  
• security offered by the scheme 
• accessible living arrangements and bathrooms 
• the size of the units
• the availability of social or leisure facilities (more often identified as important by those without care needs) and
• the proximity of the scheme to family and or friends 

Illustrative quotes from residents included:

“My age and health indicated that I should look to the future for myself and not become a burden to my daughter. The prospect of needing future care plus the security aspect that was on offer was very appealing.”

In relation to social wellbeing, the study examined the development of social wellbeing in the first year after schemes opened and found that the combination of independence, security, availability of care and support and opportunities for social interaction offered by extra care housing were much valued by residents. As one resident stated:

“I think more people should know about [extra care housing]. … It’s far better than sitting by yourself. We get together and talk about all sorts of things, and there’s entertainment. … And there’s always somebody around you.”

A year after moving in, most residents enjoyed a good social life, valued the social activities and events on offer, and had made new friends. A wide range of social activities was needed to provide for the diverse mix of residents’ interests and backgrounds. Those residents involved in running social activities found it gave them ownership of their social lives, and supported their independence. Residents’ leadership encouraged others to join in.

“I didn’t have a social life when I was at home… and now I’ve got the friends I’ve made in here. We have little dos and some of us. We do use downstairs at night, the television … put DVDs on and have a drink or two.”

Residents who felt socially isolated were often in poorer health and received care, which sometimes made social involvement harder: 

“There are only about 12 at the coffee morning. Again, you have to get your carers to push you down and take you back. Everything comes down to if it’s on your care plan, it’s a bit hard.”

It was important that communal facilities (particularly restaurants and shops) and social activities were available when schemes opened as they help residents interact in the early stages of forming a community. Residents valued retaining existing links with the local community, as well as developing new ones. However, residents had mixed opinions about people from the local community coming into the scheme. Some residents were keen to encourage links, recognising the potential local and financial benefit, while others felt resentment towards others coming into their home and using what they perceived as being their facilities. There were also some indications of tension regarding attitudes to frailty and disability, with some residents expressing the view that an increasing number of disabled people and people with greater care needs were moving in.

The main messages from this report are:

Extra care housing can provide good quality homes which enable elderly people to live independently and improve their wellbeing. 

Having well-designed homes with appropriate adaptations is important to resident satisfaction in extra care schemes.

Residents also value the social contact with other residents which this type of housing provides, and the fact that they are able to be part of a wider local community. 

In an article on a related topic, Musslewhite (2018)^{[footnote 24]} examines how older people who become restricted to their homes due to limited mobility use a view from their window to make sense of the world and stay connected to the outside space that they cannot physically be present in. The findings in the report titled ‘The importance of a room with a view for older people with limited mobility’ are based on interviews with 42 people between 70 and 90 years old, all with mobility impairments. The findings suggest that older people with restricted mobility enjoy watching a dynamic, changing, world going on outside. They engage with the world they see around them and think of themselves as having a place is what they see. 

Some of the illustrative voices recorded include:

“You can see, and they can see if I look out from here. I’ve caught them staring at me. They must think mad old bat! (woman, aged 82, suburban).”

“I love the way the trees begin to move, the branches, when the wind gets up (woman, aged 78, suburban view).”

“I sometimes comment out loud, “very smart” I’ll say or “tuck your shirt in” or “pull up your trousers” especially to the young’uns, the teens (woman, aged 84, suburban).”

“Oh well, yes, I tell my grandsons, and when they come over they want to see it too. I look forward to telling them all about it and they seem to like it too! (woman, aged 78, rural).”

The main messages from this report are: 

Those working in health and social care must realise the importance of older people observing the outdoors.

Attention should be paid to scenes where there is movement and change, with an element of mystery and intrigue at different perspectives, with a layer of human interaction and people.

This means creating situations where that is enabled and maintained through improving vantage points and potentially using technology. 

Older people may not discuss this pastime, despite its importance, and it may remain hidden from others.

Design standards for people with dementia

‘Building design for people with dementia: a case study of a UK care home’, a 2018 report by Fisher and others^{[footnote 25]} provides more information about the impact that building design has upon the quality of life for residents of a care home who have dementia. The report was based on interviews with ten residents and 5 staff who were asked about how building design features impact upon their quality of life, or the quality of life of the people they were supporting.  

Several issues emerged: 

Safety and security

There was a tension between the need to keep the building safe and secure, and residents’ frustration and concerns about locked doors with one resident stating:

“I don’t understand why the doors in the corridors are locked; we are told they are locked for our safety but it makes me anxious.”

Levels of stimulation 

Certain aspects of regular activities caused problems for some residents. These included a sense of frustration with audible alarms, and overcrowding in public spaces, such as dining or lounge areas. An individual’s tolerance level in relation to these specific issues are linked to the level of dementia. At the same time, stimulation from lifestyle activities is important, ranging from the simple provision of views onto the outside world to organising resident activities and providing areas within the building that allow residents to engage with the community. 

Access to nature and the outdoors 

Contact with nature and outside activity are importantly recognised as having a notable impact upon the lives of residents, particularly in terms of better quality of sleep and increased appetite following the outdoor access. 

Despite overwhelming evidence to support the beneficial impact of outdoor access upon quality of life, in practice this access was often denied to people with dementia.

“We are not allowed in the garden or on the balconies because of our safety.” 

Windows presenting views onto nature have a therapeutic effect, enhancing well-being and life satisfaction. One resident interviewed in this report commented: 

“The views are fantastic from my bedroom and make me feel relaxed, and it takes me away from my condition, I suffer from Parkinson’s disease which is getting worse day by day. I like sitting and enjoying the sunshine through my window and watching the views.”

Promotion of engagement with the community, friends, relatives and staff 

The importance of a community of friends to the wellbeing of people with dementia was noted by residents. The care home sought to provide opportunities for residents to engage with each other and their neighbours through providing facilities and activities such as a hairdressing salon, cinema, activities room and kitchen servery areas used by residents for cooking and baking. One resident said: 

“I like the café and hairdressers in the home because I see people from outside the home visiting.” 

Another concurred and added: 

“I like sitting in the reception people watching and talking to people from outside the care home because it is quite boring here.” 

Non-institutional scale and environment 

Some residents said the care home did not feel like ‘home’, mainly because of the scale of the building or the overall size of interconnecting rooms and corridors. Most residents interviewed preferred compact design for rooms and common areas.  

“I like the assisted ensuite to my bedroom because it feels like home and is useful with my physical condition disability, having everything close and in a small area.”

Privacy, dignity and independence 

Most residents interviewed expressed the desire to have private space, not just to preserve their dignity but also for resting when required. A dementia-friendly care home should afford residents with opportunities to maintain their independence by using familiar designs, furniture, fittings and colours, and also provisions for personalisation of the environment using personal and familiar objects. 

“I am grateful because I can go to the café, hairdressers or shop, which are all on the 1st floor, in my wheelchair with independence using the lift” 

The main messages from this report are:

The quality of life and wellbeing for people living with dementia can be significantly improved by better design of the homes and communities in which they live.

Balancing independence and choice with the need for safety and security needs careful consultation with disabled people. 

Having control over their private spaces is also an important aspect of this balance, to preserve their dignity. 

Promoting and enabling good contact with family, friends, and support staff is essential to identify and meet the expressed needs of residents.

Access to green outdoor spaces can support important wellbeing benefits.

Building in opportunities for meeting other people and enjoying shared social activities in the design of the homes can also have major benefits.

Supporting people with learning difficulties to live independently

In 2011, Mencap produced a book titled ‘Housing and Learning Disability: The facts’^{[footnote 26]} which provides an overview of how the 2011 housing, welfare benefits, and local authority services were meeting the needs of people with learning disabilities to be able to live independently with support in the community. It provides a wide range of administrative data and information from interviews and focus groups, including parents and carers of people with learning disabilities, and others. Mencap also investigated 11 more in depth case studies which included parents, carers, and advocates for people with learning disabilities, and in some cases, people with learning disabilities themselves who provide some quotes throughout the text.

However, although the report presents a clear and evidenced case for changes to the various arrangements at local and central government level which could improve opportunities for people with learning disabilities to live independently, there are few examples of the voices of these people being clearly documented and heard.  

The main messages from this report are:

There are few places where the direct voices of disabled people are actually presented. The research could have included more examples of the voices of those with lived experience to make the evidence stronger. 

Services and design in sheltered housing

Field’s 2018 report ‘The needs of older people living in sheltered housing’^{[footnote 27]} looks at sheltered housing, which is a group of self-contained homes designed for elderly people which usually includes a common room, laundry, and an alarm or communication system for residents to summon help in an emergency, as well as a warden who supports the residents in line with their needs. The report sets out to identify the support networks and the met and unmet needs of residents, and explore whether residents with depression, dementia, and or activity limitation have more unmet needs than those without such health problems. 87 residents were interviewed as part of the study, and their voices are the basis for the findings. The views of wardens were also collected by means of a questionnaire. 

The evidence shows  that residents of sheltered housing were generally found to have the majority of their physical and environmental needs met, but psychological and social needs, although less frequently reported, often remained unmet. A number of factors were associated with having unmet needs including mental health problems, aspects of social support and type of support network. The report highlighted a need to put in place new approaches by which psychological and social needs could be better met and the quality of life improved for older people in sheltered housing.

The main messages from this report are: 

Despite being specifically designed to meet the needs of elderly people with impairments, the design of these schemes left many people’s needs unmet.

Generally, their physical and environmental needs had been provided for in the housing.

People more often said that their psychological and social needs were not being met.

The unmet needs were often linked to mental health issues, and to how the housing and support did not provide the type of social support and day to day contact with other people to build social networks which they wanted and needed. 

Wider satisfaction with housing standards and design

A survey titled ‘The Accessible Housing Survey: public perceptions of accessible housing’ was produced by Ipsos MORI and commissioned by Habinteg and the Papworth Trust in 2016.^{[footnote 28]} The survey’s objectives were to improve the knowledge base around housing and aspirations of disabled people. It was prepared to enable housing providers to make a case to the government about housing provision, and to develop new models of housing provision. The data collection involved 2,074 face to face interviews with adults across Great Britain and took place in March and April 2016. The document reviewed is mainly a summary report of the findings of the survey, rather than reporting on the voice of disabled people. We report it here as it does summarise the views and voices of disabled people throughout, although more in a statistical format and one which compares the views of disabled people to those of the wider public as a whole. One important finding is that “disabled people are significantly more likely to be dissatisfied with their current home than non-disabled people – 14% of disabled people say they are dissatisfied compared to 8% of non-disabled people.” 

The main findings include: 

Disabled people are more likely to be dissatisfied with their current home than non-disabled people and that satisfaction levels were lowest for those disabled people renting from a private landlord. 

Disabled people are more likely than non-disabled people to identify changes needed to internal elements of their home, for example a downstairs bathroom or toilet or improvements to these.

Nearly half of those providing long-term care for someone say the person(s) they care for will need some accessible housing features within 5 years.

The wider public are more likely to consider moving to a property that includes accessible features – one third more likely to consider a property if it had features to make it easier to use a bathroom or step free access to the front of the property. The presence of such accessible features has a greater positive impact on choice of property among disabled people and older people more generally. 

In exploring public preferences for future housing options, half of respondents would favour staying in their current home with adaptations – 19% would favour moving to a home specifically designed or adapted for independent living, and 38% would be interested in living in a disabled inclusive, age specific scheme.

4. Adaptations and aids

Some disabled people need changes to be made to their existing home to help them live there independently, and to improve their wellbeing and quality of life. This can be through getting aids, equipment  or tools to assist them or by having changes made to the fabric of the home in which they live, also known as adaptations . Examples of adaptations and aids include:

• hygiene maintenance: grab rail, bath board, electric bath lift, lever tap extension, wheeled shower chair or commode 
• toileting: raised toilet seat, toilet frame, grab rail, and commode
• food preparation: adapted kitchen utensils  
• beds: bed raisers to increase height, bed rails, machines to help you sit up, slide sheets to help you move position with assistance 
• mobility: standing/turning frame for use with assistance and various walking frames with or without wheels 
• access – portable, or fixed concrete wheelchair ramp and outdoor rails^{[footnote 29]} 

All public and private landlords have duties to make reasonable adjustments to meet the needs of their tenants, although this is a more difficult duty to enforce in the private rented sector.^{[footnote 30]} The private landlord does not have to make changes to the structure of the home or pay for adaptations which are very expensive. They cannot charge the disabled person for making any adaptations, and what is reasonable depends on what is practical and affordable for the landlord.

Access to aids and adaptations is provided through local authorities under the provisions of the Care Act 2014 and associated regulations and guidance. Disabled people who think they would benefit from aids or adaptations can apply to their local authority to provide them. The authority must then carry out a needs assessment and if the disabled person meets the statutory eligibility criteria, the authority has a duty to ensure those needs are met. This may be through providing aids and adaptations in the home, if this would have a significant impact on the disabled person’s wellbeing. The assessment may also lead to other services being provided, such as care at home. 

In terms of paying for these aids and adaptations, many of the aids (costing less than £1,000) are free. Adaptations are normally more expensive, and the disabled person may have to contribute to the cost. They may be eligible for a Disabled Facilities Grant (DFG) in certain circumstances, as a right under the Housing Grants, Construction and Regeneration Act 1996. These grants are means-tested, and income and savings are taken into account. The maximum mandatory DFG in England is £30,000, although there is discretion for higher amounts to be paid.  

This section of the report considers how disabled people voice their needs and wishes about aids and adaptations which could be made available to them, and in some places echoes themes from the design section above. This section is more about actually putting aids and adaptations in place for specific groups.

Prioritising user needs for adaptations 

In Home Modifications and Ways of Living Well (2015), Sakellariou^{[footnote 31]} sets out that home adaptations aim to make changes to a disabled person’s home which will make the house a safer place, increase their independence, and encourage social relationships. It can also reduce the need for paid care services and long-term residential care.

This article considers adaptations made to homes of people living with Motor Neurone Disease (MND), and what improvements were considered necessary and important by these householders. It includes details of the voices of one couple living with MND. It then presents conclusions which are of a general nature which are illustrated and supported by the information in the specific case study.  It highlights that evidence from several sources indicates that people living with ongoing illnesses or disabilities often have clear views about what needs to be done to create a life they can recognize as good. However, these can often differ from the views of health care professionals about what is needed. The scientific standpoint adopted by professionals often leads them to focus on adaptations, or equipment that can render a specific practical outcome. Professionals also have more concern about the cost effectiveness of the adaptations – how much money the local authority can save. This can result in competing views about establishing and justifying need based on different opinions about not only what should be done but also why, when, and who knows best. 

As an example of this, the author provides a detailed case study of Dave who has Motor Neurone Disease and Marion, his wife of 30 years. This case study serves to provide a more detailed illustration of the general evidence presented in the overall study. The main issues illustrated by the case study are around the installation of an adaptation to allow Dave to reach the upstairs bathroom and toilet, and also to be able to use the shared bedroom upstairs. The house had limited space and installing a downstairs bathroom would preclude having a double bedroom downstairs. Dave and Marion emphasised their need to be able to share a bed as a very important aspect of their wellbeing, whereas this need was seen as less important by many other partners. There were also issues about urgency and the need to make rapid progress as MND is a progressive condition which can quickly change, whereas the administrative and implementation timetable was long. 

Commenting on what happened, the article states:

“Dave and Marion had not changed physical environments. But they were recent migrants to illness, learning to live with its constraints. They had to learn to navigate a new environment, one where disability and illness were not only focal points in their life, but also domains of professional power, beyond their control”. 

They felt reassured that the professionals shared their understanding of what needed to be done, but it soon became obvious that their different expectations posed a threat to Dave’s and Marion’s ability to be actors in their own life. 

The main messages from this paper are: 

Although everyone agreed that the adaptation (a walk-in bathroom) was needed, the location of the proposed bathroom in the house was not. The residents had to negotiate hard to get professionals to understand that for their wellbeing this had to be downstairs. This perspective of the disabled person was not valued at the start. 

Professional judgements can be driven by practical and cost related considerations, but the wellbeing considerations of the main beneficiaries should take precedence when exploring aids and adaptations. 

Focusing adaptations on quality of life, wellbeing and independence

Stevenson and Boothman’s 2019 book ‘Adapted homes, empowered lives’^{[footnote 32]} set out that the benefits of adaptations should be judged principally on how they improve the disabled householder’s quality of life, wellbeing, and independence. The research focuses on people with arthritis and related conditions of muscles, bones, and joints, of whom they report there are almost 18 million across the UK. Stevenson and Boothman set out in detail many of the practical aspects of the policy framework for aids and adaptations, how people apply for adaptations to be made, and a lot of useful statistical and administrative information about adaptations which have been made. There is also a lot of analysis of the user views and experiences around aids and adaptations, which is what we concentrate on here. 

One main point highlighted is that there is good evidence about the cost-effective benefits of home adaptations. It also notes that although grants for free aids (under £1,000) and more major adaptations are available from local authorities, only 16% of eligible people had benefited from this support. The main reason for low take-up is a lack of good information and advice about what was available. In addition, the application process can be slow, difficult, and inconsistent across different local authority areas. Stevenson and Boothman note that the Care Act sets out that independence is an important objective for individuals receiving care and support, and the Act emphasises the importance of people having choice and control over the care and support they receive so they can live the life they want to live.  

The report explores the emotional impact of providing aids and adaptations. These emotions may help motivate people to have the adaptations put in place, or in some cases can be a deterrent to having them. Below is a table which provides details of the different reactions and emotions which may be triggered by suggested adaptations. 

Table 1: Emotions acting as motivation and deterrent

Emotion: Understanding and empathy from others
As motivation: Using aids and adaptations in front of others may encourage people to see my condition as severe and treat it seriously
As deterrent: My partner/family would lack empathy if I had to make changes to our shared home. People will think I am putting it on or judge me if they see me using an aid or adaptation.

Emotion: Having face to face human contact
As motivation: Aids and adaptations will enable me to get around and see people in person
As deterrent: Having an aid or adaptation will make me too embarrassed to invite people over. Using aids and adaptations to get around might mean people choose to take advantage of me

Emotion: To be seen by others as myself and not as my condition
As motivation: I want people to see me as capable and look past what I can’t do
As deterrent: I don’t want to draw attention to my condition

Emotion: Being able to meet the needs of others
As motivation: Making changes will enable me to carry on interacting with others in the way I am used to
As deterrent: Aids and adaptations will not meet the needs of others in our shared home environment – and may even detract from their needs (by taking up room)

Emotion: Being able to engage in sexual intimacy
As motivation: Making changes will enable me to carry on interacting with my partner in a way that I am used to
As deterrent: Getting aids and adaptations may reduce our ability to be sexually intimate (for example, a single hospital bed) 

Emotion: To have shared experiences with my family and friends
As motivation: Making changes will enable me to carry on as normal
As deterrent: Aids and adaptations may isolate me from family and friends

Emotion: Feeling ‘normal’
As motivation: Using an aid or adaptation will enable me to carry on as normal
As deterrent: Using aids and adaptations makes me feel different and abnormal

Emotion: To maintain my pride and dignity
As motivation: It will increase my dignity to be able to do daily activities myself 
As deterrent: Aids or adaptations are embarrassing, they are for old people, not people like me

Emotion: Feeling in control of my condition
As motivation: Having an aid or adaptation helps me to manage and enables me to feel like I am in control of my arthritis
As deterrent: Having an aid and adaptation (particularly aimed at future needs) worries me that I will slowly lose control of my condition, that I have reached the point of no return

Emotion: Feeling independent and autonomous
As motivation: Having aids or adaptations will enable me to get around and do daily activities without relying on others
As deterrent: Using aids and adaptations will mean I have given up; that I am not self-reliant anymore. An aid or adaptation may disable me rather than enable me

Emotion: Feeling valuable and having a purpose
As motivation: Making changes to enable me to carry on will stop me feeling so useless
As deterrent: Having to make a change to my home will make me feel useless

Emotion: To feel proud of my home and home environment
As motivation: Aids and adaptations can help me take better care of my home
As deterrent: Aids and adaptations are ugly and embarrassing. Getting aids and adaptations make cleaning and DIY more difficult – for example, by cluttering the home

Emotion: Ability to engage in activities that keep me healthy
As motivation: Aids may help me do activities to boost my health and fitness
As deterrent: Aids and adaptations will stop me from keeping healthy and fit (for example, a stair lift)

Emotion: Ability to keep busy and stave off boredom
As motivation: Aids or adaptations will enable me to do things I love and stop me feeling so bored
As deterrent: Aids and adaptations may clutter the house and make it harder to do things I enjoy

Emotion: To be able to relax and destress
As motivation: Aids or adaptations will give me space and time at home to relax
As deterrent: Aids and adaptations and the process of having them installed may be more hassle

Emotion: Feeling refreshed as if you’ve had a good night’s sleep
As motivation: Aids may help me sleep better
As deterrent: Aids or adaptations attached to my bed may get in the way

This table helps understand that there are different explanations for low take-up of free aids and grants for adaptations. Low levels of take up are sometimes due to a lack of factual literature and advice about schemes, lack of available grants, and a complex application process. Equally important is to recognise the emotional aspects of the user experience which figure in their consideration of whether to install aids and adaptations. Awareness of this emotional aspect must be a central element of how agencies and professionals work with disabled people who may benefit. Exploring, understanding and respecting these emotions is part of addressing the user or professional power imbalance explored in relation to the previous paper. 

There are other dimensions of the user experience which Stevenson and Boothman identify as barriers to fulfilling the needs of disabled people, and may limit good outcomes of aids and adaptations programmes.

Information is often tailored to the needs of older people, and not to the full range of disabled people’s needs. 

Some health care professionals use complex jargonistic medicalised terms, including talking about prescribing aids and adaptations. Prescribed lists can be used to identify potential equipment that is available, but by itself this approach can leave needs unmet if individuals have a need for an aid or adaptation that isn’t on the list. It may be difficult for disabled people to express these needs using medicalised jargon. 

There is no official national best practice guidance to describe effective preventative services, or what good provision of aids and adaptations should be. Insights about the needs of disabled people and understanding of how best to engage them as equal partners in planning aids and adaptations is not being routinely spread as good practice. This lack of understanding of the potential value of services causes delays and failures to identify the correct services quickly and with the equal engagement of disabled people. 

While there is limited systematic evidence of the cost benefits of aids and adaptations, this book notes several studies of their impact. A Public Health England 2018 report on the impact of falls in the home indicated that there was a social return on investment of £7.23 for each £1 spent, and a purely financial return of £3.17 for every £1 spent.

The main messages from this report are:

Advice and decision making on aids and adaptations provision has to take full account of the wider social and emotional dimension of service user attitudes, wishes, and needs. This means that their wishes and feelings about how the adaptation fits into their life should be paramount.

There needs to be more good practice guidance about how to work with disabled people to allow them to express their views and take full account of their wishes in the decision-making process.

A prescribed list of adaptations, particularly those couched in medicalised terms, can unnecessarily and inappropriately limit the range of appropriate and available adaptations which disabled people need. This list approach leads to misunderstanding of the actual social, practical, and emotional needs which must inform decision making.

Highlighting the need for a greater focus on service user voice

A 2018 review by Mackintosh and others^{[footnote 33]} for the Ministry of Housing, Communities and Local Government (as then named) on the Disabled Facilities Grant (DFG) and other adaptations starts with a short overview of the development of the DFG over the last 30 years. The review includes details of changes of policy, administration, application, funding, and previous reviews. A considerable element of the main part of the report provides extensive administrative data on the use of DFG and other aids and adaptations funding. 

The review sets out that “the need for services that wrap around the patient or service user, rather than them having to seek out relevant services from a myriad of different sources is also becoming better understood, which will affect the findings of the review” and that “the review also needs to consider the evidence about what people feel about their homes, the type of adaptations that they want to see provided and how this might affect how the DFG could develop in future”. It also sets out that “throughout the report, the focus is on the disabled or older person and how they can be put at the centre of service provision”. Despite this focus on disabled people, however, the review did not seem to have been informed directly by the views and lived experience of disabled people. The methodology noted that the report was informed by a wide range of discussions and evidence collected in surveys and discussion groups involving providers of adaptation services, policy officials, other researchers and campaigners in the field and the DFG champions group of engaged people engaged in providing DFG services locally who share good practice. Many of the people involved were sharing their experience of working with disabled people, but no indication was given of how many of them were disabled people themselves. We therefore provide no further information on this report. 

In a section on “The need for person centred services” Mackintosh and others cite an important and influential study (Heywood 1994) which set outs that “‘good practice’ means ‘good’ from the point of view of those who need adaptations; the users” .^{[footnote 34]} The report continues by noting that “it is not just about what is expedient from the vantage point of policy makers and service commissioners; it needs to be seen from the customer’s perspective”. It further points out that apart from a few areas of good practice cited, “it was noticeable that very few authorities have carried out service transformations using co-production techniques with the client groups they aim to serve or have user scrutiny groups to create further service improvements. In addition, few have a policy to directly employ people with impairments who can bring a different perspective to the service”. Consequently “it is recommended that as part of the process to decide which options in this review might be best to take forward, that disabled and older people, their families, carers and organisations that represent them, are fully consulted. Guidance needs to be issued about co-production and consultation techniques to develop integrated local services.” 

The review by Mackintosh and others also highlights the importance of the voice of disabled people in relation to dignity, choice and control, citing Local Government Ombudsman cases, which echo the points made by the first article above:

From the findings of complaints investigated by the ombudsman service, it is evident that at times sustainable and effective individualised adaptations have not been installed. The issue in these cases is the initial assessment of need and the narrow focus taken by professionals in understanding what is important to disabled and older people. It has been identified that money is wasted, and potential harm caused when the initial assessment of need focuses on a narrow range of factors such as safety and function, rather than wider aspects valued as important to the person, such as dignity, choice, and control… and failed to give older and disabled people a voice around what they value.

The review goes on to quote 9 guiding principles.^{[footnote 35]}  These support the decision-making process, and the communication of what works are necessary and appropriate for improving the health and well-being of older people and disabled people:

9 guiding principles for installing adaptations:

1. the need to retain (or restore) dignity
2. the need to have values recognised
3. the need for relief from pain, discomfort, and danger
4. the need to minimise barriers to independence 
5. the need for some element of choice
6. the need for good communication as part of giving choice
7. the need for light 
8. particular needs of children to provide growth and change, and the need for space
9. needs of other family members and the family as a whole

The review then notes that although home adaptations are relatively simple design and construction projects, the report from the DFG summit in 2015^{[footnote 36]} (organised by the Royal College of Occupational Therapists and Foundations) identified and recommended making it easier for older people and disabled people and their carers to understand the process and to improve the flow of information between professionals and teams involved in DFGs. This can include making use of visual tools, for example 3D tools which allow disabled people to see how the adaptations look like and discuss how those changes might impact on their personal environment.^{[footnote 37]}

The main messages from this report are:

Good practice means good from the point of view of those who need adaptations - the users.

Few authorities employ co-production techniques with the client groups they aim to serve or have user scrutiny groups to create further service improvements. They seldom directly employ people with impairments who can bring a different perspective to the service.

It is evident from Local Government Ombudsman cases that at times sustainable and effective individualised adaptations have not been installed. Money is wasted, and potential harm caused, when the initial assessment of need focuses on a narrow range of factors such as safety and function, rather than wider aspects valued as important to the person, such as dignity, choice, and control. 

A lack of guidance on empowering disabled people in decision making has hampered professional reasoning and failed to give older people and disabled people a voice around what they value. 

9 guiding principles could be used to support the decision-making process and to support the communication of what works are necessary and appropriate for improving the health and well-being of older people and disabled people.

National survey of service user needs for and lack of adaptations 

The 2016 English Housing Survey adaptations and accessibility report^{[footnote 38]} published by the Department for Communities and Local Government, is a sample survey of the circumstances of households that had a person/s with a long-term limiting illness or impairment that required them to have adaptations in their home, including whether these households had the adaptation they require and the suitability of their home. The evidence in the first half of the report comes directly from the responses of disabled householders and users of adaptations around areas such as the suitability of the home to meet their needs. They are the views of disabled people, not the views of care professionals or surveyors. 

It also reports administrative data on properties. Note that these figures are around ten years old and so should be now judged as a historic snapshot, as this type of detailed report specifically on householder views on adaptations is not done annually. The report contains   mainly statistical data. We have included it as it does directly represent the views of a large and representative sample of disabled people.

The report found that, between 2014 and 2015:

• 81% of households that required adaptations in their home, due to their long-term limiting disability, felt their home was suitable for their needs 
• the 19% (around 365,000 households) who considered their living accommodation unsuitable, accounted for 2% of all households in England
• those aged 75 and over with a long-term limiting disability were least likely to state their accommodation was unsuitable (12%) – older people may have experienced disability, and lived in their current homes, for a longer period
• households with a person aged under 55 who had a long-term limiting disability were more likely (32%) to state their accommodation was unsuitable than their counterparts in other age groups (24% or less) – this is the main group of working age people^{[footnote 39]}

The survey report notes that owner occupiers have more control over altering their home and installing their required adaptations, or perhaps have the financial means to move to more suitable accommodation. In contrast, people who rent privately may encounter reluctance from the landlord to undertake housing adaptations, for example a lack of landlord incentive or confusion over responsibility to install or maintain the adaptations.

It is useful to set out the types of adaptation which disabled people stated they need (as opposed to administrative data on requests made), but which are not available to them. These included external ramps, stair lifts, and grab or handrails inside the house. The most common reasons given by disabled people for not having these adaptations installed, were that they had not had enough time to carry out the modifications (24%), they could not afford to pay for them (21%), or they were not worth doing (13%). 

The main messages from this report are: 

Working aged people are more likely to state that they do not have the adaptations which they need. This can have a major impact on their ability to be independent through being able to work.

Expressed need for missing adaptations are most likely to be around ramps into the property, stair lifts, and missing grab rails inside the house. More investigation into why they are more likely to be missing, was recommended.

Tenure – being an owner occupier or living in privately rented accommodation – has a major impact on the availability of needed adaptations. More tenure equal provision should be made available.

Housing providers listening to disabled people’s voices about adaptations

‘Housing Associations And Home Adaptations: Finding Ways To Say Yes’, a 2022 report by Mackintosh and Frondigoun^{[footnote 40]} was commissioned by a consortium of providers of housing for disabled people. It includes a main section on listening to the voices of disabled people and improving access to appropriate adaptations. In a table which mirrors many of the points made in the reports above, it set out principles for “saying yes” to the provision of appropriate user driven adaptations:

A shift in focus to find ways to say yes:

• from assets to people 
• from new build to existing stock 
• from ‘our property’ to ‘your home’
• from tenants and applicants to customers 
• from value for money and welfare to investment for the longer term 
• from silos/protecting budgets to an overall inclusive policy 
• from reacting at crisis point to prevention
• from finding ways to say no to developing ways to say yes^{[footnote 41]} 

These points clearly set out a changing focus from the professional viewpoint to prioritising the views of disabled people. Mackintosh and Frondigoun go on to add additional elements of a good adaptations and aids service including:

• more disabled staff and disabled staff in leadership positions
• better data on disabled residents and more involvement of residents in planning services 
• new customer service improvement teams to bring services together for disabled tenants
• linking housing and health 
• a clearer focus on outcomes and accountability
• a better process for complaints

It notes that the 2021 National Housing Federation (NHF) report on Diversity and Inclusion acknowledged that disabled people are not visible as leaders in the sector and that only 4.8% of association board members identified as disabled.^{[footnote 42]} Furthermore, more detailed information about the needs of disabled residents is often lacking. Data could be improved if there was a real commitment to diversity and inclusion. Quoting a recent external study^{[footnote 43]} on how negative attitudes are a major barrier for many disabled people to be connected with others, confident, and independent, Mackintosh and Frondigoun suggest there are several issues to overcome:

• disabled people spend more time at home, are more isolated and therefore more invisible
• many impairments are not obvious
• older people do not think of themselves as disabled and may not come forward for help
• some people are reluctant to discuss their difficulties, even if they are struggling or in pain
• for some people there is still a stigma attached to talking about impairments, health conditions and cognitive issues
• a third of disabled people feel there is prejudice against them, which makes them wary of discussing their impairments
• in dealing with their landlord, it is important that disabled and older tenants feel comfortable, able to express themselves, and are treated with respect, including people who struggle with social interaction or who use non-typical communication methods

In the 2018 survey of disabled people that formed the basis of this report, residents said they wanted:

• not to have to retell their story each time they speak to staff
• a neighbourhood officer they can get to know and who knows them
• landlords to record the impact of impairments and the type of help required (rather than medical conditions) as this is positive and non-stigmatising – for example, if someone has arthritis, record that they have mobility and dexterity problems, or if they have had a stroke, that they use a walking aid and need more time to make themselves understood
• staff to have access to information, so that they know the best way to communicate and can give people more time if required
• a supportive environment to be able to talk about any problems with their homes

It’s essential that solutions are created together. This is all about listening, finding out what the issues are from the tenant’s perspective, and the solutions disabled people want and need. The report also adds that when the previous decent homes standard was drawn up, it failed to include any mention of disabled people and home adaptations which meant that an opportunity to radically change levels of accessibility in the social housing stock was missed.

The main messages from this report are:

More disabled staff and people in leadership positions are needed in housing associations, in Homes England, and the Regulator of Social Housing.

Housing associations need to reach out and find their disabled tenants – they are not ‘hard to reach’, and on the contrary, it is often associations that are hard to reach for tenants.

Information on disabled tenants needs to be added to databases and client records – but deciding on methods to obtain data and what gets recorded needs to be done in co-production with disabled people.

Disabled people of all ages are an important part of the social housing population and need to play a more prominent role in the co-production of planning, policies, and service delivery.

Disabled tenants should not have to keep re-telling their story.

The benefits of having adaptations 

Provan, Burchardt and Su (2016)^{[footnote 44]}  (also published with additional policy recommendations as Habinteg (2016)^{[footnote 45]}) includes data analysis comparing the incomes of people with and without appropriate housing, which most often included homes which lack appropriate adaptations. It also includes the voices of disabled people through 40 in-depth interviews and an online survey of 1,001 disabled people. The report notes that at least 1 in 6 households with an identified need do not have all the accessibility features they need (300,000 households, including 140,000 working age households). In addition, many disabled people are not owners of their own homes although they have the income available to do so. For example, 1 in 4 households needing accessible housing (480,000) have incomes above the median income of all owner occupier households. Provan, Burchardt and Su note that people with unmet need for accessible housing are estimated to be 4 times more likely to be unemployed or not seeking work due to sickness or impairment  than disabled people without needs or whose needs are met.

The voices of disabled people from the interviews and survey clearly set out what people needed and wanted to improve the quality of their lives. One person said all she wanted was:

“the small things done that would make such a difference – shower handles and a ramp for my scooter”. (woman 45-51)

Others commented on their ability to go to work:

“I’m so exhausted during the day it would be impossible for me to work a full day shift. If I had more adaptations in the house I feel that this would save me energy which I can use elsewhere, such as work” (woman, 45-54)

“I am now able to work from home due to the adaptations, and have more money” (home owner, 45-54)

Others commented on their wider feelings about their disability status:

“I didn’t ask Social Services for help, and if I’m honest I think it is because I don’t want to admit to myself that I am disabled” (woman, late 30s)

“I’m not allowed to drive but it’s really embarrassing when he drives me to the supermarket and we park in the disabled spaces – people often look at us and comment negatively as I look like a healthy 20 year old” (woman, 20s)

“The main problem is lack of confidence, being unable to do certain tasks, and mocking from my peer group” (woman 35-44)

Private landlords could prevent improvements despite the general duty to do so: 

“Social services agreed to install external and some internal grab rails – but the landlord refused to allow this even at no cost to him” (man, early 50s, self-employed)

The main takeaways from this report are: 

Disabled people who lack needed aids and adaptations are 4 times more likely to be unemployed or not available to work than similar disabled people who have or do not need adaptations.

Some of the needed adaptations require small amounts of investment but can have a major impact on wellbeing and work readiness.

Disabled people can experience feelings of shame or embarrassment because of their disability, and lack the confidence to seek adaptations which they need.

5. Finding a suitably adapted home to move to

This section considers specifically how disabled people with housing needs can find the housing they require, and in parallel, how local authorities can match available adapted housing to people who need it in their local area.  Some disabled people may have been granted “priority need” status for housing by their local authority, based on a medical assessment of their level of need compared to other “vulnerable” people in their area. This means that the local authority may have the duty to find them a suitably adapted property, if no other housing solution is available – such as adapting their current home. This said, there is no obligation on local authorities in England to maintain a register of disabled people who need homes with specific adaptations (for example to the standard needed by a wheelchair user), nor to maintain a register of available homes which might be allocated to disabled people in need of them. 

Another dimension of getting access to appropriate and adapted homes and services is dealt with below in terms of the housing journey of young people. This is about how some disabled people do not actually look for appropriate housing, perhaps because their family or friends discourage them from doing so. Access is not just about available housing, but also about actually feeling confident and well informed to know that it could be available to independently live in such a home. There is an excellent and very accessible guide to how disabled people can get access to housing and related services they need, produced by the Equalities and Human Rights Commission.^{[footnote 46]} This is not part of this review of literature, but useful to mention here.

Allocating accessible social housing in Scotland

Anderson, Theakstone, Lawrence, and Pemble’s 2019 report, MATCH ME – What works for adapted social housing lettings? Action research to enhance independent living for disabled people^{[footnote 47]} explores the national policy of letting adapted social housing in Scotland. It looked at what works for disabled housing applicants, and what needs to change to make the process more efficient. The report was based on a series of in-depth interviews and focus groups with disabled people in 3 Scottish local authorities, exploring their experience of gaining access to suitable housing for their needs. The main recommendations are: 

• improved understanding of the physical and mental harm of inappropriate housing will come from hearing the voices of disabled people through co-production approaches
• better use of technology must be made to improve the quality of data held on adaptable or accessible housing and on the specific needs of applicants
• disabled people and their families should have equal housing opportunities and the right to an accessible home in the community that ensures and protects their human rights
• Scottish local authorities should establish co-production groups involving disabled people to inform decisions on housing
• Scottish local authorities must also review organisational policies that require tenants to revert a property back to its original state upon leaving
• the Scottish Government should improve accessibility standards for new build social housing so that it is more economical and easier to adapt in the future
• the Scottish Housing Regulator must recognise that accessible or adapted housing may require additional time between tenants to allocate and carry out the necessary adaptations 

The main messages from this report are:

To allocate appropriate housing and avoid harm, the voices of disabled people must be heard. This can include the use of co-production groups.

Disabled people should have a right to appropriate housing and equal opportunities to access it.

Extra time may be needed before disabled people decide whether to accept offers, including reviewing what further adaptations may need to be made.

Better information should be kept and shared by and among local authorities to widen the opportunities for disabled people to find and bid for appropriate homes.

Anderson, Theakstone, and Lawrence’s 2020 article, ‘Inclusive Social Lettings Practice: Opportunities to Enhance Independent Living for Disabled People’^{[footnote 48]} provides a study of lettings practice for accessible and adapted homes in the social rented sector, from the perspectives of disabled people and housing providers. The article compares what social landlords set out to do in allocating properties, and what disabled people experience when looking for appropriate homes. It found that while housing providers were proactive in reviewing policy and practice to better meet the housing needs of disabled people, there remained some distance between landlord goals and applicant experiences. 

Disabled people often spend a long time in inappropriate housing, while waiting for a more accessible home. This negatively affects their quality of life and physical and mental health. The report focuses on how society and the environment can render many impairment groups less able to live independently. The complexity of disabled people’s housing needs means that the matching process for suitable housing was also complex, often requiring individualised solutions. Recommendations to improve practice include making better use of technology to improve data on accessible/adapted properties and applicant needs; flexibility in letting practice to make it easier to find the right homes; and flexibility in fully recognising disabled people’s housing and independent living needs. 

Social rented housing remains an important way to meet disabled people’s needs for independence. Here, a more explicit understanding that disability is also a result of the barriers which society puts up in failing to recognise and meet the needs of people with impairments, is required. In the research, the co-production approach emphasised the involvement of disabled people, and focused on their lived experiences of disability. Disabled people were accepted as experts on what must change to achieve independent living.

The main messages from this report are:

Recognise that letting periods for accessible/adapted social housing may require additional time to achieve an effective match and carry out necessary adaptations before an applicant is able to move in.

Where a vacancy cannot be matched to one of their disabled applicants, landlords should canvas widely for other suitable disabled people seeking homes, among disability organisations and housing providers in and beyond the local area.

Improve involvement of disabled people by establishing local co-production groups to inform decisions on housing and how it enables independent living.

Explore the use of new technology to improve ways of finding adapted/accessible properties and to enable disabled people who are unable to visit in person to be able to visit “online”.

Recognise wider housing-related needs of disabled people, for example, access to a garden, public transport, and services such as retaining the same GP.

Review allocations systems to ensure that applicants who make some ‘liveability’ improvements to their homes while waiting for an accessible property are not put at a disadvantage when a more suitable home is made available.

Develop peer support networks where a disabled tenant who has experienced the lettings process, can support new disabled home seekers.

Ensure local housing need assessments include targets that are in line with the amount of new accessible/adapted housing required across tenures.

Develop minimum accessibility standards for new build social housing so that it is more economical and easier to adapt in the future.

Housing journeys of disabled young people

Housing Pathways of Disabled Young People: Evidence for Policy and Practice, by Mackie (2012)^{[footnote 49]}  starts by noting that disabled young people tend to leave home later in their lives than their non-disabled peers. It is widely perceived that this delay is the result of constraints such as a lack of appropriate housing, insufficient information about housing options, and difficulties accessing transitional support. It explores the different medical and social models of disability. 

The main empirical evidence presented in this report is drawn from biographical interviews with 31 young people aged 18 and 30 years, of mixed socio-economic backgrounds, living in both rural and urban local authority areas in Wales. The participants had a range of physical/sensory impairments and learning difficulties. Due to the diverse range of impairments of the young people, interviews varied in format: most adopted a typical question and discussion format, while those undertaken with younger interviewees and interviewees with learning disabilities incorporated several visual tasks. In visual tasks, young people were asked to draw a picture to represent a particular experience, and these images were then used to prompt further discussion or in some cases short responses to closed questions. The main findings are grouped under the headings below.

Deciding to leave home

Comprehensive and consistent housing-related information should be made available to all disabled young people before they decide to leave the family home, and the information should be presented by a range of agencies including housing providers, social services, and schools. Care should be taken to make sure that the decisions of young people are not disproportionately swayed by the opinions of their parents or close friends, which is often a barrier to moving to independent housing. One approach might be to offer some form of peer support, where another disabled young person who has moved into independent accommodation would give advice and provide an account of their own experiences. One young person explained that she had been involved in making a DVD to inform parents about her transition to independent living to dispel some of the myths and concerns that parents sometimes hold, and she suggested that this approach might reduce parental concerns.

Finding suitable accommodation

Local authorities and housing associations should provide more accommodation that meets the needs of disabled young people; this is likely to involve the adaptation of existing properties and provision of new accommodation, based on a well-informed evidence base of the housing needs of disabled young people in the area. Also important is improving the consistency of information provision on the housing options available to young people. Third, housing providers, social services and local authorities must improve engagement of disabled young people during the process of finding accommodation by informing and supporting them to search for and choose their accommodation, rather than just identifying and allocating housing.

Maintaining accommodation

Where young people face difficulties maintaining their accommodation, access to advice, which fully appraises big decisions, should be available to disabled young people, either through local authority housing services or social services.

The main messages from this report are:

Young disabled people are often deterred from leaving home and living independently by a lack of information and advice on their housing options.

Parents and friends can also be unaware of the options and benefits of independent living and advice and support to them can help undermine what is a principal barrier to young people deciding to move home. 

Support and understanding of their options can be provided to young people through talking to other people with similar experiences who have successfully moved into independent accommodation. 

In allocating and choosing where to move, housing providers may need to make some specific adaptations to the homes based on the individual needs of applicants. This means collecting information about these specific needs, providing better local information on available options, and actively engaging with the young person in finding suitable options in the local area.

Support may also be needed from the housing provider or local authority to maintain and manage the new home effectively once they have moved in. 

Young people experiencing sight loss 

Blood (2015)^{[footnote 50]} in ‘Housing and independent living: 4 scoping studies’ looks at difficulties experienced by young people with sight loss who are seeking suitable independent housing which is available to them. Similar information is available in the National Development Team for Inclusion report My Own Place (2012).^{[footnote 51]}

For younger adults who are sight impaired, location is often more important than the physical attributes of housing, although this can depend on whether they have an additional impairment. Participants in the study considered that elements of a good location include a relatively safe neighbourhood, easy road crossings and accessibility to transport, employment opportunities and amenities. 

“You might find the right house and it’s only 5 minutes from school but there’s a road you just can’t cross independently in between.”

Family and close friends often provide a lot of support, both in the moving process and with day-to-day assistance, such as household tasks or transport. Many described the need for support before the move - to spot the damp patch, fruit flies, or unsuitable decoration, check the suitability of the area, or help with the paperwork. For many, technology provides a major pathway to leading a full and independent life. This includes items such as speaking clocks and technology such as computers, apps and devices which enable them to access everyday essentials (for example, reading signs and labels).

There are very few housing advice services or resources available for younger adults with sight loss who are seeking to move to independent living. Many look to social networking sites, friends, or parents to find out about their housing options. There is more advice and information available to those who are facing a housing crisis or who have lost their sight since getting their own home. However, funding cuts in the sight loss sector have reduced access to these services and, although there is information online, this can be difficult to find and to apply to personal circumstances.

Most younger adults with sight loss do not need ongoing care or support, although some will require this. However, the majority do need intensive but time-limited support to find a suitable property, move into it, make minor adjustments, and learn new routes around the local area.

Education and employment opportunities are vital in creating opportunities for younger adults to live independently. The research revealed that people often face a ‘cliff edge’ of loss of support at the end of their formal education and that they experience significant disadvantage in getting jobs, especially better paid jobs with security of contract.

One recommendation of the report was to develop better brokerage. This meant developing existing models and agencies to provide personalised, cross-tenure housing advice, brokerage, and time-limited support for people with sight loss. This would include the development of housing information resources targeted at this group and should link into and build on existing online networks.

The main messages from this report are:

Location can be more important than the interior design of the homes for young people with sight loss. Having no crossings to enable the young person to safely cross the road to essential services, for example, can be an insurmountable barrier to the property being suitable. This can prevent access to shops or to transport to employment. 

Young people with sight loss seeking a place to stay need additional and tailored information and support to find an appropriate home. This can be a short-term brokering of support while a home is identified which meets their needs but is essential. 

Providing housing to disabled international students

‘Housing and transport: access issues for disabled international students in British universities’, an article by Soorenian (2013) for the journal Disability and Society^{[footnote 52]} explores the needs of disabled international students in British universities in relation to enabling them to enjoy independent living. In addition to housing issues, it also considers transport, which is not within the scope of this review. 

The housing dimension examined, includes students’ living arrangements and sets out a range of barriers that this group of students encounter based on their double or multiple identities as disabled, international and sometimes mature or postgraduate students. In addition, they may face linguistic and cultural differences when studying and living in the United Kingdom. Together these barriers can result in the students having difficulty taking part in the educational opportunity they have opted to pursue. This can have the consequence of undermining their ability to lead a fulfilled and independent life and go on to enjoy the better career opportunities which education can provide, as well as subjecting them to additional discrimination.  The research used focus groups, followed by 30 one-to-one interviews, as a means to fulfil the goal of emancipatory research in creating an investigation setting in which disabled people empowered themselves.

Participants said that they had encountered numerous barriers while living in inaccessible university residences. These included lack of information about accessible accommodation prior to arrival and concerns about being accommodated with a certain group of students (for example with undergraduates when they were on a post-graduate course). More specifically the barriers that students with visual impairments faced, ranged from lack of traffic-light indicators for safe road crossing to reach their accommodation, to uneven steps into their accommodation, to inaccessible electronic equipment. Students with physical impairments complained about lack of accessible university accommodation on the ground floor, narrow corridors, and heavy doors. Participants with other impairments such as attention-deficit hyperactivity disorder and dyslexia were not affected by the accessibility or their lack of accommodation.

Although some difficulties experienced, including lack of ramps and visual fire alarms, were independent of students’ nationalities, issues related to family accommodation and meal provision during holidays were particular to disabled international students. Funding the high cost of accessible accommodation was also cited to be a specific problem for international students, whose access to funding is restricted. Additionally, the accommodation office’s unfamiliarity with disabled international students’ unique needs contributed to negative accommodation experiences. More generally there were difficulties resulting from conducting ongoing negotiations around ensuring accommodation was accessible in a second language, both before arrival and during the stay, and these additional meetings were time-consuming and emotionally draining while studying for a demanding degree programme.

The main messages from this article are:

Disabled international students in UK universities can face unacknowledged barriers to their ability to engage fully in the academic and wider social environment and lead a fulfilled and independent life while studying. This can also undermine their opportunity to gain the career opportunities which education can provide, as well as subjecting them to additional discrimination.

This can include a lack of information about available appropriate housing before they arrive, inappropriate placement in unsuitable housing when they arrive, and difficulties in negotiating alternative accommodation. There are also barriers to solving other continuing accommodation problems throughout the duration of their course of study. 

Inappropriate placements can also undermine their ability to build good social relationships with peers with whom they would wish to live, and physical barriers can undermine their general ability to socialise in the accommodation or to freely move around campus to classes and to wider social and community events. 

These difficulties can be based on a lack of training and awareness on the part of university staff, and lack of good policies which are informed by understanding the needs of these students in more depth.

6. Community and wider support  

This section notes that disabled people needing suitably accessible homes may well have existing community links based on where they currently live. If their home can be adapted, then these links can be strengthened, as many adaptations make it easier for them to be mobile and take part in community activities, including feeling comfortable in inviting people to their home. 

Where more specialist accessible designed housing, or housing with care services, is developed, there are different models and options to help people moving into those homes to build links to the local community in which they live. These links can have many benefits in terms of wellbeing and feelings of independence. Unfortunately, however, there are sometimes challenges related to community, including disabled people being subjected to discrimination and harassment from the local community. All these issues are explored below.

Current provision of appropriate housing in the local community

Ahmed’s 2013 article, ‘Paralympics 2012 legacy: accessible housing and disability equality or inequality?’^{[footnote 53]} sets out the author’s own lived experience of being unable to find wheelchair accessible housing near to her home, which was close to the Olympic Park in East London. This was in the context of the 2010 commitments that local communities would benefit from the Olympic Games. The paper:

“…highlights how the rhetoric about the Paralympics seems hollow when the government is hell-bent on cutting benefits, provision of accessible accommodation and demonising those who need financial support. At the opening ceremony of the Paralympics, David Cameron commented on the ‘inspirational’ athletes, while at the same time the government carefully erodes the welfare system that helped many of the same athletes to achieve their dreams.” 

A further comment provided more detail on the problem: 

“Unfortunately, there is not one single wheelchair-accessible accommodation available in Tower Hamlets, which is in close proximity to the Paralympic venue. Indeed, the nearest accommodation of this sort is apparently in Northampton. That would mean commuting from Northampton to East London every day in [using] a wheelchair (approximately 60 miles); this is of course ludicrous. Is there really no suitable housing for disabled people in London? Should we not be able to live in, or close to, the borough where we intended to settle rather than in a different county?”

The main messages from this paper are:

The rhetoric of inclusivity after the 2012 Olympics is not evident in policy and practice.

No suitable wheelchair accessible housing available in many London boroughs with the only options being to move 60 miles away.

A 2020 article by Ellis and others^{[footnote 54]} explored the idea of how ageing in place can encourage community and belonging by empowering people to choose appropriate housing in their local area. This can be done by providing more inclusive housing options through new and alternative approaches and schemes, which move away from segregated housing provision like large, sheltered housing schemes and focuses more on integrated housing for older and disabled people within the wider community. This article explores the social and emotional outcomes of a diverse group of disabled people living with mental health difficulties, physical and intellectual impairments, illnesses, and age-related conditions, who moved into a small, purpose-built estate of smart homes. Ellis and others’ research is based mainly on interviews with tenants both before moving and once established in new homes. It focuses on wellbeing and inclusion. Much of the new housing they move to is called “SmartBodes housing” which was developed through coproduction with manufacturers, housing associations, healthcare providers and tenants.

“SmartBodes were designed to be highly functional, easily adaptable and suitable for a wide range of health and mobility needs and aimed to support wellbeing and preventative health solutions including end of life care. The technology within the homes is a combination of passive sensors, such as movement sensors, ‘internet of things’-enabled devices such as fridges, cookers, showers etc, and bed and chair sensors.”

Residents living within the homes had a variety of support needs and access different support services – both formal and informal. The residents moved a relatively short distance from their previous home, which enabled the maintenance of existing social networks and routines. 

Having assessed the experiences of the cohort of residents living with the designated housing estate, the authors demonstrate the opportunity to provide accessible, adaptable homes within the wider community. 

“In a way, the SmartBodes show us what all communities could be: the integration of life-long homes with technological support to enable people to age in place; to encourage and maintain the social networks and linkages they want and need within the communities in which they have already built them.” (page 74)

A further report by Coele (2014)^{[footnote 55]} ‘Co-housing and intergenerational exchange: Exchange of housing equity for personal care assistance in intentional communities’, has similar objectives of developing intentional, intergenerational, mixed communities:

“…it should be possible to devise mechanisms which will enable communities to address the changing assistance needs of disabled and older residents while giving younger resident assistants an equity stake in the housing market. The existence of such mechanisms on a national scale would facilitate mobility between otherwise independent communities and maximise the choices available to residents requiring different forms of assistance at different stages in their lives.” (page 75)

The paper is based on the experiences of the author in exchanging accommodation through a process of intergenerational exchange to move to a more appropriate model of “co-housing”. Co-housing communities are intentional communities, created and run by their residents. Each household has a self-contained, private home as well as shared community space. Residents come together to manage their community, share activities, and regularly eat together. Cohousing is a way of resolving the isolation many people experience today, recreating the neighbourly support of the past.^{[footnote 56]} 

The article proposes that co-housing could help address 2 major social challenges by enabling people to remain within an intergenerational community as they age and develop assistance needs while also providing accommodation equity. It further identifies government acknowledgement of the value of cohousing and quotes from a 2008 government report entitled “Lifetime Homes, Lifetime Neighbourhoods”.^{[footnote 57]}

“Lifestyles and choices are changing fast. There is a growing community of people who want to reject what for many older people is the isolation of living alone. The cohousing movement is growing significantly […]. Denmark and the Netherlands developed the model, but we also want to see greater innovation from developers in England in this area and a more creative and positive response to the possibilities” (page 76)

The main messages from the reports are:

Developing co-housing communities should design and build to the highest Lifetime Homes (LHT) criteria^{[footnote 58]} and include accommodation for care assistants within the community. 

Local authorities should prioritise and facilitate the development of cohousing. 

Registered housing providers should prioritise the development of a mechanism to facilitate the exchange of housing equity and care assistance within and between different cohousing communities. 

One way in which housing for older people can be located in quieter areas within intergenerational neighbourhoods, is to locate multiple co-housing communities in the same neighbourhood. 

The siting of multiple co-housing communities in the same neighbourhood would have several advantages: 

• housing for older people can be located in quieter areas, while remaining within intergenerational neighbourhoods
• training and work schedules of social and health personnel are more easily coordinated, and transport costs reduced as a result of geographical proximity
• the location of personal care assistance work opportunities close to assistants’ own homes

A 2019 study by Hicks and Lewis^{[footnote 59]} explored how residents of a modernist housing scheme conceptualised wellbeing and welfare in place and how far they thought their neighbourhood supported or prevented community relations. Within this study, disability issues were mentioned by 7 residents – both within the context of their own current living arrangements or in ageing. One of the respondents, Rob, a disabled man, discussed how he has found inventive ways to deal with the lack of accessibility within his home. Hicks and Lewis describe how for Rob “current inaccessibility is circumvented through inventive bodily skill and is outweighed by the benefits of space and outlook.” In the words of Rob:

“… people keep asking me, and they say, ‘Why do you stay two-up and you’ve got a disability?’ and whatever, ‘… and you have to slide down the stairs,’ and all that stuff, but it’s because I like the space. And I often wonder if I was on a ground floor flat, would I like the space as much and is it because the outlook is so unusual here?”

Developing specialist adapted housing in local communities

Bhakta and Pickerill’s 2016 paper ‘Making space for disability in eco-homes and eco-communities’^{[footnote 60]} highlights how housing design has failed to take account of the needs of disabled people, by focusing on people with cerebral palsy:

“Inaccessible housing systematically excludes, oppresses, and dominates certain groups in society Inaccessibility is blamed on the individual failing to adapt to the home, rather than acknowledging a responsibility towards creating an enabling and accessible environment for people to live in.”

The report focuses on 3 eco-communities in England to explore how their eco-houses and wider community spaces accommodate the complex condition hypotonic cerebral palsy. It argues that there are 3 useful and productive ways to interrogate accessibility in eco-communities:

• understandings of legislation
• barriers
• mobility

“These have 3 significant consequences for eco-communities and disabled access: ecological living as practised by these eco-communities relies upon particular bodily capacities, and thus excludes many disabled people; disabled access was only considered in relation to the house and its thresholds, not to the much broader space of the home; and eco-communities need to be, and would benefit from being, spaces of diverse interaction.” (page 406)

The barriers are highlighted in contrast to the theory that the ethos of many eco-communities is one of inclusivity and acceptance of difference. Bhakta and Pickerill argue that this “progressive inclusion of difference, on a particular ethics of inclusion, and on self-building houses to meet the needs of occupations should, more than conventional housing, offer particular opportunities for disabled people…Eco-communities with their self-built homes, progressive values, and democratic structures should be exemplary spaces for the inclusion of disabled people and in the design of disabled friendly homes.” (page 407)

The article also maintains that “eco-communities need to embed the principles of political ecology and environmental justice much further into their practices and their spaces to widen the access to meaningful participation in political decision making to more groups. For disabled people, this requires the reduction of physical and social barriers to access in eco-communities.” (page 408)

The main messages from the paper are:

Eco-communities are inclusive, accepting and building in different access needs from the start. 

This means moving beyond a focus on the inside of the house to a wider understanding of how the outside spaces enable inclusion and empowerment of disabled people.

These communities also empower disabled people by the way the communities are self-managed. 

A further paper by Evans and others^{[footnote 61]} explores the role of extra-care housing as a means of continuing to house people in local communities. It has a specific focus on the changing needs of older people living with dementia.

“Policy in England has focused on enabling people living with dementia to remain in their own homes for as long as possible, often with the support of a family carer. However, many people struggle to maintain an acceptable quality of life in their own homes as their dementia advances, often due to the design limitations of mainstream housing and the challenge of finding specialist domiciliary care that is affordable and of sufficient quality.  Extra care housing offers a model that aims to support older people living in their own apartments, while also offering specialist person-centred care as and when it is needed.” (page 1493)

Extra care housing (ECH) in the community is seen to have 3 main characteristics:

• a focus on supporting independent living in self-contained accommodation for rent, shared ownership or sale
• the availability of care that is flexible and available 24 hours a day 
• access to a range of communal amenities such as a shop, restaurant and laundrette

Not everyone living in ECH receives care, and any care that is provided has to be paid for privately or through adult social care. Evans and others identify the value of extra care housing for those living with dementia as follows:

“ECH has seen considerable innovation in the design of the built environment to support people with dementia …The environment can present challenges for people living with cognitive impairment, sometimes exacerbating their symptoms, but adaptations to the environment can have a number of positive impacts including assisting with wayfinding and reducing the need for support.” (page 1494)

In summary the report argues that extra care housing can maximise dignity and self-reliance for residents with dementia. However, there are also a number of challenges or potential limitations:

“…specialist services of this nature are not provided consistently across the sector and often depend on the approach taken by particular providers.” (page 1494)

The main messages from this paper are:

Well-designed local extra care homes can maximise dignity and self-reliance for residents with dementia while still maintaining community links.

There are challenges around ensuring services are provided consistently and from the need to ensure training is appropriate and services are suitable for those with advanced dementia and higher needs.

7. Homelessness risks for disabled people

This section considers the risks of homelessness which can be faced by some disabled people. Tackling homelessness and rough sleeping are big areas of social policy where it is well recognised that some people with specific or complex support needs are at particular risk and need tailored support and housing provision to meet their needs. There are a number of documents which cover this topic in the University of Leeds review of literature, and here we concentrate on documents which highlight the experiences of disabled people and the drivers and impact of homelessness on disabled people. 

Homelessness among people with autism

Stone’s 2019 article, “‘The domino effect’: pathways in and out of homelessness for autistic adults”^{[footnote 62]} sets out that autistic adults may be at increased risk of homelessness due to the association between autism spectrum disorders (ASD) and poor socio-economic outcomes. In particular, social vulnerability, unemployment, and difficulty interacting with services can be catalysts for homelessness, compounded by lack of diagnosis and appropriate support. It presents the narratives of 2 autistic adults, known in this paper as ‘Max’ and ‘Peter’, who had experienced homelessness. They explain the factors which led them to become homeless and those that aided their rehabilitation. 

In the article, Stone argues that while Max and Peter were susceptible to the socio-economic disadvantages which affect autistic adults in various ways, the resilience and determination displayed in their narratives countered traditional stereotypes of resistance to change. Furthermore, it is suggested that homelessness is not an outcome of autism, but one of the disabling barriers autistic adults face throughout their lives. In relation to the risks of homelessness, the paper sets out the voices of ‘Max’ and ‘Peter’. Without adapted support Peter could not apply for welfare benefits and, knowing he could not afford the next month’s rent, pre-emptively moved onto the streets. Though this was the event that triggered his homelessness, Peter did not attribute it as the overall cause. He described instead a domino effect of events which led to his becoming homeless. 

“People got learning difficulties, how do they know how to handle money? When you apply for unemployment, they practically give you the krypton, what do you call it, too many questions to answer, too many technicalities, too much bureaucracy. It’s like the unemployment form is a book!” 

Similarly, Max discussed relationship breakdown initially leading to him leaving home, followed by difficulties holding down employment and burning bridges with landlords as contributing to his becoming homeless.

“She got so fed up she said that she had to force me to leave because she couldn’t keep me there anymore, I wasn’t ‘doing’ anything.” 

Stone’s report notes that there are high levels of ASD in entrenched rough sleepers, who had experienced periods of homelessness averaging 10.8 years. Some autistic people may find it easier to be on the streets than deal with daily responsibility, associating this with the degree of control autistic participants felt they had over their lives. These findings are reported to be supported by anecdotal reports from homelessness services which suggest autistic rough sleepers create fixed routines which help them feel in control and reduce anxiety.

Despite the emergence of a social model of disability over the last 20 years, by which disability is understood as society’s failure to meet the needs of people with impairments, Stone’s report suggests that this has not permeated the autism field. It describes a systematic oppression of autistic individuals which is reflected in the social and economic disadvantages experienced by Max and Peter in many aspects of their lives. These disadvantages were catalysts for Max and Peter, significantly contributing to their becoming homeless.

Although they did not have an autistic label for most of their adult lives, Max and Peter experienced difficulties resulting from their perceived status as different, and society’s inability to accommodate this difference. This suggests that the stigmatisation surrounding autism does not solely arise from its categorisation, but from society’s lack of acceptance of people who do not meet contemporary constructs of normal. 

The report notes that awareness of the disproportionate number of homeless people with ASD in the UK is rising. Initial recommendations for homeless services include improving communication, structuring service delivery, and providing visual information. It suggests more must be done to assist autistic adults to mitigate against experiencing homelessness. These are difficult changes to make, as they concern addressing the wider inequality of opportunity autistic adults face in society today. Challenging the status quo and demanding change is critical in order that autistic people do not continue to be over-represented in the homeless population. 

The main messages from this article are:

People on the autism spectrum are disproportionately represented among homeless people in the UK. 

This is partly caused by a more widespread failure to understand and provide for their needs, and this should be urgently addressed including in relation to their housing needs.  

The poor economic and social outcomes for this group also make it considerably more difficult for them to be able to find and pay for decent housing. 

Garratt and Flaherty’s 2023 article “‘There’s nothing I can do to stop it’: homelessness among autistic people in a British city”^{[footnote 63]} also explores the experiences of homelessness among autistic adults. The article is based on a research study exploring several homelessness experiences in Oxford, UK. These accounts identify specific, additional risks of homelessness among autistic people. This group also appeared to have fewer means to reduce the risk of homelessness, and faced multiple challenges to resolving their homelessness. Garratt and Flaherty also identify disabling practices that autistic people may face within the diversity of homeless experiences, while adding valuable biographic detail to the factors leading to homelessness and attempts to exit homelessness. 

Table 2:  Analytical themes and subthemes

Theme 1: Autism and a higher risk of homelessness

Subtheme 1.1 Financial precarity
Subtheme 1.2 Challenges living with others
Subtheme 1.3 Autism as an additional risk of homelessness 

Theme 2: Autism and few opportunities to avoid homelessness

Subtheme 2.1 Reduced family and friendship networks 

Theme 3: Autism and greater challenges to resolving homelessness

3.1 Unmet needs in homeless hostels
3.2 Limited access to social housing
3.3 Barriers to navigating support services
3.4 Risk of exploitation and mate crime 

Note: This text has been adapted from Table 2 of Garratt and Flaherty (2023) into machine readable text.

Autistic people may be doubly disadvantaged by their low priority on the housing register. They also find it more difficult to press the housing authority to be given higher priority.  The invisibility of autism may result in officials they deal with perceiving them as odd or ill-mannered; conversely, being articulate may lead service staff to mistakenly conclude that support is not needed. Overall, clients who are autistic appeared disadvantaged by rules and expectations that apply within homelessness accommodation, including warnings and exclusions for inappropriate behaviour.

The main messages from this article are: 

The accessibility of autism diagnoses needs improving to enable people to access tailored support and protection under disability legislation. 

Services need to adopt flexible, neurodiversity-aware practices. There are barriers to autistic people accessing and engaging with housing and homelessness services equivalent to those reported for healthcare.

Policies are needed that address the structural risks of homelessness, recognising that autistic participants experienced these more intensely than their neurotypical peers.

There are specific challenges in being able to access social housing, reinforcing previous evidence highlighting the importance of accommodation support for autistic people. Autism awareness is needed to ensure that autistic applicants are suitably prioritised on housing registers. In addition, autistic people are more likely to refuse accommodation so greater sensitivity and flexibility is also required when considering how this group is treated when they get offers of social housing.

The vulnerability and needs of people on the autism spectrum may not be appreciated by housing officers making the assessments of priority need that underpin accommodation offers. 

Homelessness among people with an intellectual disability

In “‘It will crumble men’: The views of staff and disabled people about facilitating the identification and support of people with an intellectual disability in homeless services”^{[footnote 64]} McKenzie, Murray, Wilson and Delahunty explore how people with an intellectual disability (ID) face significant health inequalities and barriers to accessing appropriate support, which are made worse if the person is also homeless. An important barrier is that services may not recognise that the person has ID. This qualitative study explored the views of staff members and people with intellectual disabilities  about the identification and support needs of homeless people and the role of an ID screening questionnaire as a way to help improve service provision. Interviews were conducted with 16 staff members and 8 disabled people from homeless services in the South East of Scotland between March 2017 and 2018. 

The main themes emerging were: 

• Not diagnosed or declared – which explored the barriers to support due to the person’s ID not being identified by others or disclosed by the person 
• Disabling environment – which identified the ways in which organisations can make support difficult for people with ID to access 
• It’s not against them, it’s to help them – which explored the benefits and issues associated with screening for ID in homeless services. 

The results identified the complex support needs likely to be experienced by many homeless people with ID and suggested a number of implications for practice.

The main messages from the report were: 

Using a screening tool was seen as having a number of benefits, if used where there is a process to provide the person with further specialist assessment and support. 

There is a need for training in relation to identifying and supporting this group of people. 

The screening tool was seen as a way to help provide information about the prevalence and needs of people with ID, to inform and shape policy, service development, and delivery.

Miller and others (2021)^{[footnote 65]} review the support given through a project in Glasgow, Scotland, where homeless people are provided with a tenancy without initially engaging in any additional programme of support (called “Housing First”). This review was not specifically about disabled people, although many of the clients of the project needed support with their poor mental health. It does provide the voices of clients, though is of limited direct relevance to this literature review. Three comments from the interviews in the programme (which are verbatim including local expressions) are illustrative of how clients felt the services were helpful, in terms of support available and independence: 

“When they gae me all this I didn’t expect the help that they’ve gae me, but it’s actually mare than what I expected, and mare than what I can ask for. I thought… you’d get your hoose… and then you’d have to fend fir yoursel. But no, it’s all there as soon as you walk in. It’s there, and you don’t need tae ask fir nothin. (male client)” 

“It maybe doesn’t seem much, but to me, it’s my kingdom […] I need to pinch myself because from where I was to where I’m livin now, it’s that hoose that has done it fir us. With the power o’ they keys, to just know you can lock your own door instead of lying in alleyways, oh I get the shivers sometimes even thinking of half the places I’ve slept. (male client)”

“Aye, aye, but it’s all about building trust. Because I don’t trust nobody and that’s what I’ve been taught on the street and learned, ‘never trust anybody’. And you don’t get used to people helping you and gaeing you stuff because you are like ‘what do they want?’, ‘What are they after?’ They don’t just gae you that for nothing.”

The main takeaway of this report is: 

People value being trusted to be independent while also having easy access to any support they may need when they ask for it.

8. Conclusions

There are clear points of view that are presented consistently by disabled people throughout the literature.

Being able to have a suitable home which meets the needs of disabled people is seen as having the potential to greatly improve their wellbeing, independence, and feelings of safety and security. It is also their right under national and international legislation on human rights.

Many disabled people find that the professionals who are supposed to assist them in finding homes which meet their needs do not actually prioritise their wishes and needs. 

This tension between disabled people’s needs and professional views can be based on a failure to explore in detail what those needs are. Disabled people can have very different types of needs depending on the nature of their impairment. Professionals (and legislators) need to be prepared to explore needs which can be surprising, and can be totally missed by some of the medicalised lists or cost-benefit considerations in the current guidance issued to professionals. 

Emotional and social needs are particularly unmet for disabled people, particularly those emotional and social needs of a suitable home, as described by disabled people themselves. These emotional and social aspects can be as important as the physical aspects of aids and adaptations to the buildings. 

Co-production of homes which are suitable for disabled people can in some cases require approaching discussions, options, and choices in ways which take full account of the communication needs that some disabled people with mental health, learning difficulty, or autism related needs may have. 

Some disabled people can also experience other disadvantages including poverty, discrimination, and difficulty engaging with services which make their housing situation worse, particularly those with mental health conditions, learning difficulties, or autism. This can affect how housing providers and local authorities make arrangements to find suitable housing for them. 

There is also a lack of representation of disabled people in many of the bodies responsible for planning the services which are in place to ensure that disabled people can access the homes they need. 

There is specific legislation and financial provision in England to provide suitable housing to meet the needs of disabled people, and link them to available offers of housing. But failures to listen to what disabled people actually need can both lead to a failure to fulfil these obligations, and waste public funds on inappropriate adaptations or aids. 

Despite the points above, there is considerable evidence of good practice and extensive literature on informed design principles about how to provide suitable housing, and awareness of the need to co-produce better homes. Several examples of this good practice have been discussed in this review. 

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National Housing Federation (2021) Equality, diversity and inclusion: An insight review of housing association staff in England. London: NHF

Provan, B., Burchardt, T. and Suh, E. (2016)  No place like an accessible home: quality of life and opportunity for disabled people with accessible housing needs, London: London School of Economics and Political Science.

Provan B. and Laura L. (2023).The Social and Economic Value of Wheelchair User Homes LSE London https://sticerd.lse.ac.uk/CASE/_NEW/PUBLICATIONS/abstract/?index=10383 

Rooney, C., Hadjri, K., McAllister, K., Rooney, M., Faith, V. and Craig, C. (2018) Experiencing visual impairment in a lifetime home: an interpretative phenomenological inquiry, Journal of housing and the built environment : HBE., 33(1): 45-67 https://doi.org/10.1007/s10901-017-9553-6.

Royal College of Occupational Therapists (2016) Care Act 2014 Guidance for Occupational

Therapists: Disabled Facilities Grants 2016, p. 19. [online] https://www.rcot.co.uk/practice-resources/rcot-publications/downloads/care-act-2014-dfg

Sakellariou, D. (2015) Home Modifications and Ways of Living Well, Medical Anthropology: Cross Cultural Studies in Health and Illness, 34(5): 456-69 https://doi.org/10.1080/01459740.2015.1012614.

Satsangi, M., Theakstone, D., Matthews, P., Lawrence, J., Rummery, K., Mackintosh, S., Baghirathan, S. and Boniface, G. (2018) The Housing Experiences of Disabled People in Britain: https://www.equalityhumanrights.com/en/publication-download/housing-experiences-disabled-people-britain 

Shelter (2017) The Impact of Housing Problems on Mental Health. London: Shelter.

Soorenian, A. (2013) Housing and transport: access issues for disabled international students in British universities, Disability and Society, 28(8): 1118-31 

Stevenson, K. and Boothman, L. (2019) Adapted homes, empowered lives, Chesterfield: Versus Arthritis.

Stone, B. (2019) ‘The domino effect’: pathways in and out of homelessness for autistic adults, Disability and Society, 34(1): 169-74 

Theakstone, D. (2012) Disabled People and Housing: Choices, Opportunities and Barriers, Housing Studies, 27(7): 1052-54 

Turning Point (2015) Contemporary housing issues: roundtable discussion and case studies, London: Turning Point.

Walters, S. and East, L. (2008). The cycle of homelessness in the lives of young mothers: the diagnostic phase of an action research project. Journal of Clinical Nursing, 10: 171-179

Widom, C., and Maxfield, M. (2001). An update on the cycle of violence (NCJ 184894). Washington, DC: National Institute of Justice.

1.   United Nations Department of Economic and Social Affairs (2006) ‘Article 19 – Living independently and being included in the community’. Convention on the Rights of Persons with Disability. ↩

2. Equality Act 2010. Ch6. Available at https://www.legislation.gov.uk/ukpga/2010/15/section/6  ↩

3. Regulator of Social Housing (2023). Equality Objectives 2023. ↩

4.   Equality and Human Rights Commission. Social Housing and Your Rights. Information for disabled people.   ↩

5.   RIBA (2024). Inclusive Design Overlay to the RIBA Plan of Work.   ↩

6.   NHS (2021). Housing options for older people or people with disabilities - Social care and support guide - NHS   ↩

7. Own Your Home. ‘Discounted Sales’: https://www.ownyourhome.gov.uk/scheme/discounted-sales/  ↩

8. Shelter (2021). Accommodation for Disabled People. ↩

9.   Equality and Human Rights Commission (2018) Housing and disabled people: Britain’s hidden crisis, London: Equality and Human Rights Commission. ↩

10.   Equality and Human Rights Commission (2018) Housing and disabled people: Scotland’s hidden crisis, London: Equality and Human Rights Commission. ↩

11.   Equality and Human Rights Commission (2018) Housing and disabled people: Wales’s hidden crisis, London: Equality and Human Rights Commission. ↩

12. Satsangi, M., Theakstone, D., Matthews, P., Lawrence, J., Rummery, K., Mackintosh, S., Baghirathan, S. and Boniface, G. (2018) The Housing Experiences of Disabled People in Britain: EHRC Report 114  ↩

13. Rooney, C., Hadjri, K., McAllister, K., Rooney, M., Faith, V. and Craig, C. (2018) Experiencing visual impairment in a lifetime home: an interpretative phenomenological inquiry, Journal of housing and the built environment: HBE., 33(1): 45-67 ↩

14. Lewis, A. and Torrington, J. (2013) Extra-care housing for people with sight loss: Lighting and design, Lighting Research and Technology, 45(3): 345-61 ↩

15. Note: All quotes from disabled people in this report are drawn from the specific document being reviewed, and full reference details of the report are in the Bibliography at the end (Annex Two). We have not included the specific page number of quotes as the main reference is to the original document in which they can be found.  ↩

16. Cho, H. Y., MacLachlan, M., Clarke, M. and Mannan, H. (2016) Accessible Home Environments for People with Functional Limitations: A Systematic Review, International Journal of Environmental Research and Public Health [Electronic Resource], 13(8): 17.  ↩

17.   Social model of disability – Disability charity Scope UK  ↩

18. Diggle, J., Butler, H., Musgrove, M. and Ward, R. (2017) Brick by brick - A review of mental health and housing, London. ↩

19. Shelter (2017) The Impact of Housing Problems on Mental Health. London: Shelter. ↩

20. Lowe, C., Gaudion, K., McGinley, C. and Kew, A. (2014) Designing living environments with adults with autism, Tizard Learning Disability Review, 19(2): 63-72 ↩

21. Full report is NDTI (2022) 200 Lives: Evaluating supported living and residential care for adults with learning disabilities Bath, NDTI. https://www.ndti.org.uk/assets/files/200-Lives-Full-report.pdf  The initial summary report is National Development Team for Inclusion (2019) Housing models consultation: main findings, Bath: National Development Team for Inclusion. ↩

22. Barnes, S., Torrington, J., Darton, R., Holder, J., Lewis, A., McKee, K., Netten, A. and Orrell, A. (2012) Does the design of extra-care housing meet the needs of the residents? A focus group study, Ageing and Society, 32(7): 1193-214 ↩

23. Darton, R., Bäumker, T., Callaghan, L. and Netten, A. (2011) Improving housing with care choices for older people: the PSSRU evaluation of extra care housing, Housing, Care and Support, 14(3): 77-82 ↩

24. Musselwhite, C. (2018) “The importance of a room with a view for older people with limited mobility”, Quality in Ageing and Older Adults, 19(4): 273-85 ↩

25. Fisher, L. H., Edwards, D. J., Parn, E. A. and Aigbavboa, C. O. (2018) Building design for people with dementia: a case study of a UK care home, Facilities, 36(7): 349-68 ↩

26. Mencap (2011) Housing and learning disability: the facts, London: Mencap. ↩

27. Field, E. (2018) The needs of older people living in sheltered housing, Dissertation Abstracts International Section C: Worldwide, 75(3) ↩

28. Ipsos Mori (2016) Accessible housing survey: public perceptions of accessible housing, London: Ipsos MORI. ↩

29. List from Age UK Factsheet 42. ↩

30. Shelter (2021) Reasonable adjustments for disabled people.  ↩

31. Sakellariou, D. (2015) Home Modifications and Ways of Living Well, Medical Anthropology: Cross Cultural Studies in Health and Illness, 34(5): 456-69. ↩

32. Stevenson, K. and Boothman, L. (2019) Book Adapted homes, empowered lives, Chesterfield: Versus Arthritis ↩

33. Sheila Mackintosh S.  Smith P. Garrett H. Davidson M. Morgan G. and Russell R. (2018):  Disabled Facilities Grant (DFG) and Other Adaptations – External Review  MHCLG/University of the West of England, Bristol.   ↩

34. Heywood, F. (1994) Adaptations: finding ways to say yes, Bristol: SAUS Publications, p.7. This book is out of print and no longer available except from the Bristol SAUS library reserve collection by arrangement.  ↩

35. Adapted from Frances Heywood (2004) The health outcomes of housing adaptations, Disability and Society, 19:2, 129-143, DOI: 10.1080/0968759042000181767  ↩

36. Royal College of Occupational Therapists (2016) Care Act 2014 Guidance for Occupational Therapists: Disabled Facilities Grants 2016, p. 19.  ↩

37. For more details see Money, A. and others (2015) Using the Technology Acceptance Model to explore community dwelling older adults’ perceptions of a 3D interior design application to facilitate pre-discharge home adaptations, BMC Medical Informatics and Decision Making, 15:73. ↩

38. Department for Communities and Local Government (2016) English Housing Survey: adaptations and accessibility report, 2014-15, London, Great Britain ↩

39. It is useful to note that the 2016 LSE report “No Place Like an Accessible Home” concluded that people with unmet need for accessible housing are estimated to be 4 times more likely to be unemployed or not seeking work due to sickness/disability than disabled people without needs or whose needs are met. This report is not in this review as it is beyond the cutoff date which the University of Leeds review was working to. See Provan, B., Burchardt, T. and Suh, E. (2016) No place like an accessible home: quality of life and opportunity for disabled people with accessible housing needs, London: London School of Economics and Political Science. ↩

40.   Mackintosh S. and Frondigoun R. (2022) Housing Associations And Home Adaptations: Finding Ways To Say Yes, Foundations, Glossop. ↩

41. Note: This list has been adapted from Figure 9.1 of Mackintosh and Frondigoun (2022) to machine readable text  ↩

42. National Housing Federation (2021) Equality, diversity and inclusion: An insight review of housing association staff in England. ↩

43. Dixon, S., Smith, C. and Touchet, A. (2018) The disability perception gap, London: Scope Policy report.  ↩

44. Provan, B., Burchardt, T. and Suh, E. (2016)  No place like an accessible home: quality of life and opportunity for disabled people with accessible housing needs, London: London School of Economics and Political Science. ↩

45. Habinteg and Papworth Trust (2016) The hidden housing market: a new perspective on the market case for accessible homes, London: Habinteg Housing Association Papworth Trust. ↩

46. Equality and Human Rights Commission. Social Housing and Your Rights. Information for Disabled People.  ↩

47. Anderson, I., Theakstone, D., Lawrence, J. and Pemble, C. (2019) MATCH ME - What works for adapted social housing lettings? Action research to enhance independent living for disabled people: ↩

48. Anderson, I., Theakstone, D-D. and Lawrence, J. (2020) Inclusive Social Lettings Practice: Opportunities to Enhance Independent Living for Disabled People, Social Inclusion, 8(3): 54-65   ↩

49. Mackie, P. K. (2012) Housing Pathways of Disabled Young People: Evidence for Policy and Practice, Housing Studies, 27(6): 805-21 ↩

50. Blood, I. (2015). Housing and independent living: synthesis of 4 scoping research for Thomas Pockington Trust, London: Thomas Pocklington Trust. ↩

51. National Development Team for Inclusion (2012) My Own Place Transition Planning for Housing. NDIT, Bath. ↩

52. Soorenian, A. (2013) Housing and transport: access issues for disabled international students in British universities, Disability and Society, 28(8): 1118-31 ↩

53. Ahmed, N. (2013) Paralympics 2012 legacy: accessible housing and disability equality or inequality?, Disability and Society, 28(1): 129-33 ↩

54. Ellis, L., Munoz, S. A., Narzisi, K., Bradley, S. and Hall, J. (2020) Creating Community and Belonging in a Designated Housing Estate for Disabled People, Social Inclusion, 8(3): 66-76 ↩

55. Coele, M. (2014) Co-housing and intergenerational exchange: Exchange of housing equity for personal care assistance in intentional communities, Working with Older People, 18(2): 75-81  ↩

56. About Cohousing - UK Cohousing Network  ↩

57. DCLG 2008, available at Lifetime Neighbourhoods  ↩

58. Note: The Lifetime Homes (LTH) criteria formed the starting point for M4(2) introduced in 2015, but pre-date those 2015 standards. Although LTH design standards can be used voluntarily by developers, in fact post 2015 their Local Planning Framework planning permission conditions have been set with reference to m4(2) or M4(3) design requirements. ↩

59. Hicks, S. and Lewis, C. (2019) Investigating Everyday Life in a Modernist Public Housing Scheme: The Implications of Residents’ Understandings of Well-Being and Welfare for Social Work, British Journal of Social Work, 49(3): 806-23 ↩

60. Bhakta, A. and Pickerill, J. (2016) Making space for disability in eco-homes and eco-communities, Geographical Journal, 182(4): 406-17 ↩

61. Evans, S. C., Atkinson, T., Cameron, A., Johnson, E. K., Smith, R., Darton, R., Porteus, J. and Lloyd, L. (2020) Can extra care housing support the changing needs of older people living with dementia?, Dementia (London), 19(5): 1492-508.  ↩

62. Stone, B. (2019) ‘The domino effect’: pathways in and out of homelessness for autistic adults, Disability and Society, 34(1): 169-74 ↩

63. Elisabeth Garratt and Jan Flaherty (2023) ‘There’s nothing I can do to stop it’: homelessness among autistic people in a British city, Disability and Society, 38:9, 1558-1584.  ↩

64. McKenzie, K., Murray, G., Wilson, H. and Delahunty, L. (2019) Homelessness-‘It will crumble men’: The views of staff and service users about facilitating the identification and support of people with an intellectual disability in homeless services, Health Soc Care Community, 27(4): e514-e21. ↩

65. Miler, J. A., Foster, R., Hnizdilova, K., Murdoch, H. and Parkes, T. (2021) ‘It maybe doesn’t seem much, but to me it’s my kingdom’: staff and client experiences of Housing First in Scotland, Drugs: Education, Prevention and Policy, 10.1080/09687637.2021.1926429: 1-14. ↩