Research and analysis

“Not as simple as right or wrong” – a themed report on social care and support for disabled people in the UK

Published 29 January 2026

“Not as simple as right or wrong” – a themed report on social care and support for disabled people in the UK

Nicole Brown, Nicki Martin, Preethi Premkumar

London South Bank University

Executive summary 

This report explores evidence on disabled people’s:

• lived experience of social care and support in the UK
• experiences of accessing these services

The evidence sources came from a wider systematic review on the lived experience of disabled people in the UK. This was conducted by the Centre for Disability Studies at the University of Leeds and Disability Rights UK. 

This evidence review addressed the following research questions:

• What are disabled people’s experiences of using social care and support?
• What are disabled people’s relationships with their personal assistants and other care staff?
• What barriers do disabled people experience when using social care and support, and how do these barriers relate to disabled people’s sense of independence 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 support schemes, designs, adaptations, and services can improve independent living and inclusion in the community, and prevent isolation and segregation from the community services?

Methodology 

229 published reports were considered from a database of 1,380 entries for this review. 97 publications were excluded from the review following a screening process. This meant that 132 publications were included in the review. 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 social care and support.

Summary of findings

Findings in response to the 5 research questions were that disabled people’s experiences of using social care and support varied depending on:

• their personal circumstances
• the specific care or support they needed
• their level of impairment and independence
• the care staff’s personal investment

Personalisation in social care and support is important. But should not get in the way of disabled people’s preference for strong leadership, decisive care directives and sharing the responsibility of making decisions.

Disabled people build many meaningful and positive relationships with their personal assistants and care staff.

The quality of social relationships with personal assistants and carers is subject to external factors, including:

• staff workload
• poor retention rates
• high staff turnover
• lack of training

This is particularly true for disabled people from diverse intersectional and cultural backgrounds.

A sense of power and agency are crucial when it comes to using and accessing social care and support.

Disabled people work hard with their carers (formal and informal) to maintain their independence and autonomy.

Transitions to residential care homes are the last resort when all other options have failed, such as assisted living.

Many factors affect disabled people’s feelings of inclusion in society, including:

• language
• accessing information and social media via modern technology and the internet
• coming from a marginalised community

Disabled people report very positive experiences of schemes that enable their socialisation in society.

The closure and reduction of day care centres and short-break schemes mean that many disabled people feel isolated in their immediate surroundings.

In contemporary society, disabled people feel isolated, alienated, and excluded even when they are effectively living alongside non-disabled people.

Social care and support need to be more nuanced and go beyond just being a means to meet particular needs.

1. Introduction

This report presents selected findings of research on the support for disabled people both from their carers and the wider social services.

Evidence was taken from a wider systematic review of the evidence on disabled people’s lived experience in the UK. This was commissioned by the Cabinet Office’s Disability Unit (DU) and conducted by the Centre for Disability Studies (University of Leeds) and Disability Rights UK in 2021. The review of evidence on this theme was conducted by London South Bank University in 2024. 

The aim of this qualitative literature review was to build on the systematic review titled: The lived experience of disabled people in the UK: a review of evidence. 

The specific aims were to understand disabled people’s:

• experiences of accessing social care and support
• experiences and opinions of relationships with carers
• own experiences of the care provisions

The review looks at:

• existing evidence of disabled people’s lived experiences of social care and support
• the potential challenges of, and opportunities for, accessing social care and support, and the role of carers in this support
• the relationship between disabled people and carers when accessing social care and support

2. Policy context

In the UK, social care and support services sit alongside other services, such as healthcare. The detailed aims of social care and support services have changed over time in response to societal demands, government decisions, and policy changes.

But the main principles have remained the same for decades:

• ensure safeguarding
• provide care
• promote health
• offer respite for carers

These principles are further expanded upon through the implementation of legal frameworks, such as the European Convention on Human Rights (ECHR). These frameworks are enshrined in domestic law through:

• the Human Rights Act (1998)
• the Scotland Act (1998)
• the United Nations Convention on the Rights of Persons with Disability (UNCRPD) (2009)

Like healthcare, social care is devolved, with different legal frameworks in England, Scotland, Wales, and Northern Ireland. In England, the Care Act 2014 provides the legal framework for adult social care. It puts well-being at the heart of care decisions and promotes prevention and integration with health services. 

The result is the heightened emphasis on a person’s dignity, autonomy, and independence. Social care and support are no longer ‘done to’ disabled people. Instead, they are developed in collaboration with them. The end goal is that disabled people may be fully integrated into society purposefully and effectively. 

Such ideals have led to the understanding that disabled people are entitled to personalised care. Government policy and third sector organisations can benefit from a change in the current situation to concentrate on the actual experience of what it means to access and receive social care and to use social support provisions and systems. They can do this by including the voices of disabled people and the people who support them in research and policy development.

3. Methodology

The studies included for this review were taken from the lived experience of disabled people in the UK: a review of evidence. This is a systematic review carried out by the Centre for Disability Studies at the University with Disability Rights UK and commissioned by DU. It includes 1,380 of qualitative studies on the lived experience of disabled people in the UK between 2010 and 2021. From this, an evidence review was conducted to address the following research questions:

• What are disabled people’s experiences of using social care and support?
• What are disabled people’s relationships with their personal assistants and other care staff?
• What barriers do disabled people experience when using social care and support, and how do these barriers relate to disabled people’s sense of independence 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 support schemes, designs, adaptations, and services can improve independent living and inclusion in the community, and prevent isolation or segregation from the community services?

This previous systematic review was the starting point for this current review on social care and support of disabled people in the UK. Specifically, in agreement with DU, the ‘independent living’ category was a starting point for identifying articles for the topic of the current report. The ‘independent living’ category of the full database included 189 publications. We could not access 5 publications from the list in this category, so we considered 184 publications for inclusion in the current review. 

To identify publications relating to the research questions, this ‘independent living’ database was screened for publications with the terms ‘social care’, ‘social support’, ‘care’ and ‘support’ in their title or the abstract. Terms like ‘healthcare’ and ‘peer-support’ were not included, as they would have diverted from the research questions. Through this closer reading of the ‘independent living’ database, 61 publications were considered directly relevant to the research questions. These 61 publications were further studied to identify the inclusion and exclusion criteria. In addition, this initial inspection helped to modify the codes for the thematic analysis that were initially derived from the research questions. 

Development of inclusion and exclusion criteria 

Overall, our approach to inclusion and exclusion was guided by: 

• best practices in disability studies research
• disabled community principles 
• the social model of disability 

The principle ‘nothing about us without us’ was one of the most important guiding principles in this process. Publications were included if they related directly to the first-hand experiences of disabled people in relation to social care and support, their challenges, and their consequences. The definition of ‘disabled’ was kept broad and in line with the Equality Act (2010) and did not take into account personal categorisations. For example, some disabled people may not feel ‘disabled enough’ or ‘comfortable enough’ to be identified as disabled. This is particularly true for people who identify as neurodivergent or have fluctuating chronic illnesses. So even if ‘disabled’ participants did not formally identify as disabled but fell within the definition of the Equality Act 2010, they would have been considered as disabled for the purpose of the current thematic analysis. 

In short, it was decided to include:

• articles of qualitative research in reputable peer-reviewed journals
• books, reports and statistical analyses of relevant quality 
• studies that used a qualitative methodology, such as interviews, focus groups and open-answer surveys 
• studies where participant samples consisted of disabled adults as defined under the Equality Act (2010) as those who have “a physical or mental impairment that has a substantial and long-term negative effect on their ability to do normal daily activities”  
• studies that directly addressed the research questions around the experiences of social care and support, their challenges, and consequences
• studies that included disabled people in the UK

It was decided that in the spirit of ‘nothing about us without us’, articles or reports would be excluded if: 

• they only included the voices of parents, carers, and advocates of disabled adults
• they were duplicates
• they were methodological articles, systematic reviews of secondary analysis, commentaries, case studies, or evaluations of interventions
• they were written in a language other than English 

Screening for quality 

Quality of the research was determined according to the 8 ‘big-tent’ criteria of good quality research.^{[footnote 1]} 

These criteria are commonly used to assess the quality of research and are also often applied in the process of peer reviews. This was needed because some publications were not peer-reviewed. The 8 criteria are:

• worthy topic
• rich rigour
• sincerity
• credibility
• resonance
• significant contribution
• ethics
• meaningful coherence^{[footnote 2]}

The selection and judgement of such criteria remains somewhat subjective, as what may be a ‘worthy topic’ for some may not be for others. But in qualitative research owning the subjectivity, positionality or interpretation is important. Because of this, more weight was placed on rich rigour, credibility, significant contribution, ethics, and meaningful coherence. It is the team’s observation that systematic reviews often reduce the number of publications to be included to limit the researchers’ workload in the constraints of time. But given the nature and topic of the project and the need for disabled people’s voices to be included, an approach of inclusion over exclusion was taken. Where the quality of a publication would have led to its exclusion in conventional academic settings, we decided to include those publications that significantly amplify the voices of a minority group. A minority group signifies groups of people who are at risk of being discriminated against due to having one or more protected characteristics as defined in the Equality Act (2010). 

Equality and equity matters

Where publications were based on the quantitative and qualitative data provided by disabled participants as well as their carers and support workers, it appeared that the carers’ and support workers’ voices were given more space and weighting. These publications were problematic in the context of our ’nothing about us without us’ philosophy. But we decided to include them as we found that there would have been equality and equity concerns if we were to produce a themed report about the quality and standards of social care and support without hearing from some of the stakeholders such as carers and support workers. 

Additionally, because other potentially important demographic information was not reported on, we were not able to identify any intersectional experiences such as the ethnicity, race, gender, caring responsibilities of support workers, and types of impairments.

Similarly, we found that the categorisations in the original database meant that there were some minor overlaps where, for example, some articles in the ‘independent living’ database also referred to educational settings. As there are separate thematic reports for other categories apart from ‘independent living’, we did not expand on such topics. Instead, we concentrated on the scope of the research question and used such publications to offer a fuller picture of social care and support. Overall, we applied an approach that favoured inclusion over exclusion. 

Determination of publications to include and exclude

Once we had established this methodological framework, we began to re-screen all publications from the ‘independent living’ database to determine which articles would be firmly included in the thematic analysis for this report, and which would be excluded.

We returned to the accessible publications, which we manually filtered by screening each individual publication for its quality and categorisation according to the inclusion and exclusion criteria. The initial screening to arrive at exclusion criteria was from the first 61 publications in the ‘independent living’ category that had the search terms, like ‘social care’ and ‘social support’, in the title and the abstracts. This led to the exclusion of 78 publications and duplicates from the ‘independent living’ database. In the end, the screening and filtering of the original ‘independent living’ database of 189 publications resulted in a list of 106 publications that formed the basis for this report (see Publications from ‘independent living’ database included in the review). 

Given the prominence of the themes emerging from the initial screening of the 61 articles from the ‘independent living’ database, it was considered appropriate to further consult the wider database for other publications that would include terms like ‘social care’ and ‘social support’ in the title. 40 such publications were identified from the full database. Once the exclusion criteria were applied to these 40 publications, 26 additional publications were included in the review (see ‘care’ and ‘support’ publications from the entire database included in the review). As a result, this report is based upon the review of 106 records included from the ‘independent living’ category and the 26 records included from the wider database giving 132 reports altogether.

Extracting data and synthesising studies into themes

The process of extracting the data began with a coding process. Based upon the research questions, the following categories and codes were identified:

• accessing social care
• kinds of support
• relationships with assistants and care staff
• barriers to accessing social care
• challenges of using social care
• consequences of barriers (independent living)
• consequences of barriers (inclusion and exclusion)
• sense of independence
• sense of belonging in society
• improvement of independent living
• improvement of inclusion
• isolation and segregation

As the reading deepened, it became clear that the codes were too specific to accommodate the wide range of publications listed in the database. So we adjusted our list and generated the following categories from the narrow list of 61 articles:

Experiences of social care provision 

• best practices of social care provision
• worst practices of social care provision

Experiences of accessing social care 

• best practices of accessing social care
• worst practices of accessing social care

After reading all the publications included in the review closely, many more categories were generated, for example:

• concerns about care provision
• access to information 
• enabling independence
• fostering inclusion
• changes in social care provision
• transferability of social care provision
• identity- and culture-specificity
• financial pressures and austerity
• lived experience of disability

Through repeated reading, coding, and re-coding the publications, it was possible to gain intimate knowledge of the dataset on hand. This resulted in the generation of the following themes and subthemes:

Experience of social care and support

• supported living
• community-based support
• short-break schemes
• self-directed support 

Experience of access to care

• accessing information to access care
• decision-making
• transitions 

Experience of care relationships

• personal assistants
• intersectionality 
• advocacy and self-advocacy groups
• lived experience of disability

Limitations 

As this 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 social care and support.

4. Findings

In the following section, we present the following 3 themes: 

1. Experience of social care and support

2. Experience of access to care

3. Experience of care relationships 

We briefly introduce each theme and their respective sub-themes with an overview of the arguments presented across all publications. We then offer selected direct quotations taken from participant statements as they were originally published. 

1. Experience of social care and support

Reports dealing with values and best practices of social care and support highlighted the historical development of social care and support policies, and decades of austerity in the UK. Social care and support encompasses a wide range of systems of delivery and provision of care. Across these services, there is also great variation in the quality of support initiatives. In the literature reviewed, the quality of service provision appears to be best when social care and support is provided by trained or skilled staff^{[footnote 3]}, ^{[footnote 4]} or by specialist staff^{[footnote 5]}, and in small units of care^{[footnote 6]}.

Studies also showed variation in disabled people’s experience of social care and support^{[footnote 7]}, ^{[footnote 8]}, ^{[footnote 9]}, especially in culture-specific contexts^{[footnote 10]}. Some reports highlighted the close link between organisational policies and practices and the resulting experience of care settings – for example, between young people with a range of impairments and paid social support workers^{[footnote 11]}. Care provision can range from community-based support to short-break schemes, and from self-directed support and care provision to supported living arrangements. Because of this, experiences cannot be simplified into best and worst overall practices. They must be considered in the context of these specific care initiatives.

Supported living

In the literature, supported living often implies the disabled person living in a care home and receiving residential care. But in the reports reviewed, no study explored disabled people’s experiences of supported living and residential care. Instead, supported living was mentioned in the context of decision-making in transition journeys and the experience of moving from independent living to supported living settings. These are explored further in themes of decision-making and transitions. Generally, research participants across the studies expressed a strong desire to maintain autonomy and independence, and considered supported living arrangements as a last resort. 

“I don’t want to leave here” (own home) (disabled participant)^{[footnote 12]}

“I am trying to fight it (transfer to supported living) (…) I would like to stay here and be able to. (…) Why I would end up living with another person with a disability is that we could share the support worker. It is an economic necessity, not a choice (…) it’s a choice of one shitty thing or another shitty thing.” (disabled participant)^{[footnote 13]}

These views indicate a clear preference for self-sufficiency in the comfort of their home, rather than a supported living accommodation which would arise out of economic needs.

Community-based support

Community-based support initiatives involve the care of and support for disabled people in community settings and local hubs or daycare centres. Researchers report on the experience of disabled people, especially those with intellectual disabilities, attending such centres.^{[footnote 14]}, ^{[footnote 15]}, ^{[footnote 16]}, ^{[footnote 17]}, ^{[footnote 18]} In most cases, disabled people, their families, and their carers are very keen to highlight the benefits of accessing these forms of community-based support initiatives.

“So I meet up at the hub once a month and meet up with the Getting Out group, and I also go to the Penguins [disabled person’s] Swimming group each week, so that’s a weekly group, and I attend a meeting called Busy People.” (Participant with learning disabilities).^{[footnote 19]}.

“I like going to the Chinese community centre for recreational activities such as Tai Chi, Mahjong (a game originally from China and is played by 4 players).” (Participant with physical impairments)^{[footnote 20]}

For many, these day centres offer significant learning opportunities in an educational sense, along with the social learning gained from connecting with others.

“[Before attending the centre] I wouldn’t have done the pack bags at Asda and it’s talking to other people because it’s the people who need the bags packing (…) I wouldn’t have done that couple of years ago but I’d do it now.” (Participant with intellectual disabilities).

“Play a game or something, a jigsaw, or you can do knitting in there or sewing in there. Or you can play table tennis. Or you can go in the snooker or like bowling here.” (Participant with intellectual disabilities)^{[footnote 21]}

The evidence shows that disabled people seem to value community-led social networks, meet-ups and recreational activities. As disabled people are engaged in activities and learning, the day centres actively improve relationships among disabled people, but also between disabled people and their carers. The centres generally lead to the development of a sense of purpose and identity among disabled people. This in turn is related to enhanced wellbeing as indicated as follows:

“Yeah it made me more erm happy. I’ve got something to do with my life, like helping other people, raising money for other (…) erm things to do here and all that so it is–it’s a good thing.” (Participant with intellectual disabilities)^{[footnote 22]}

Short-break schemes

Short-break schemes are reported to function similarly to community-based support initiatives. Short-break schemes are commonly arranged for families of disabled children rather than adults. They also offer occasional short breaks and respite from care rather than weekly activity provision. As stated by these quotes:

“When first came I said I wanted to live here!” (Participant with life-limiting conditions)^{[footnote 23]}

“Like going to beach, going to, like, even castle, castles, and er going out to the seaside.”^{[footnote 24]}

“The best thing is that you get…if it’s a nice day then you get to go out” (Autistic participant)^{[footnote 25]}

“Now that I’ve left the school I was at, it’s the only place I can see some of my friends from there.” (Participant with intellectual disabilities)^{[footnote 26]}

These quotes suggest that these short break schemes enrich and offer disabled people a welcome change from the routine. They also offer a space for maintaining existing social networks. Studies show that the short-break schemes were generally viewed positively as they reduced adolescents’ emotional difficulties, such as issues with anxiety and loneliness. One adolescent stated:

“Well, instead of sitting at home on my Xbox, which I normally do, it’s good to get out a bit and see more friends. So, it’s better that I am being more social.”^{[footnote 27]}

This shows that short-break schemes can provide social recreation, and young disabled people often prefer this social interaction to gaming based on digital technology. Where family members were involved in the residential breaks, the wider family benefited from the support network created through meeting like-minded parents and siblings. In turn, such networks strengthened family relationships with their teenagers who had life-limiting conditions.^{[footnote 28]}

Self-directed support

Self-directed support schemes have been created to give disabled people more autonomy and enhance their personalisation of care provision. Local authorities and service providers offer different versions of this initiative, which offers money to the disabled person instead of particular care services. The disabled person can then use this individual and personal budget in a way that is most meaningful to them.^{[footnote 29]}, ^{[footnote 30]}

Many participants commented positively on the scheme despite having some reservations about the added responsibility of having to manage a budget that is not necessarily their own. 

“For some people this is a good idea, for others it is not … Some people are incapable of taking care of their own money and need someone to do it for them. People will be able to do more things than they would have been able to do but there are some people that will not be able to deal with the money themselves.” (Participant with a mental health condition)^{[footnote 31]}

“It’s had a very positive impact on my life … I feel in control of it and I feel like I’m managing my life rather than somebody else organising something for me.” (Participant with a mental health condition).^{[footnote 32]}

“When it comes to the use of public money for your care, which is what we’re talking about . . . I just think you have a bigger responsibility with it, as well as a freedom.” (Participant with intellectual disabilities).^{[footnote 33]}

The evidence shows that some people find managing their finances empowering. Others lack experience in handling money and find it challenging, especially when it concerns public money. Regardless, engaging in the self-directed support scheme by organising and maintaining finances can increase disabled people’s self-esteem. The skills involved in managing money and gaining satisfaction of being in control over some aspects of their lives are experienced as empowering. Such experiences offer hope for further development towards independence and self-worth. 

“I really didn’t understand. Wow, I can get a laptop to help me get back, get used to computer skills, admin skills, to refresh that and hopefully the idea is returning to work. … So that was all in the support plan.” (Participant with a mental health condition).^{[footnote 34]}

The advantages of self-directed support in relation to self-esteem, self-worth and increased autonomy and independence are undisputed. But for some disabled people, this approach is not particularly welcome, as it does not support the development of meaningful relationships with others. Having such self-directed support could inadvertently mean that disabled people often miss out on the regular contact they could otherwise receive with a main carer or support worker, unless they actively involve personal assistants. 

“It would be nice to have someone to talk to and let all your problems out wouldn’t it? I did have a lady here from Social Services, but I think she was rather keen to get away you know, she arranged to have a chair lift in the bath, but I haven’t seen her since.” (Participant with visual impairment)^{[footnote 35]}

At the same time, participants are concerned about the risks involved in deciding to manage personal budgets. A participant with a mental health condition stated: 

“You might feel you are well enough and you are trying to convince other people and other people are trying to convince you that you are not well. But as far as you are concerned you are right and they are wrong. So you have to be well enough to take control.”^{[footnote 36]}

Relinquishing social bonds, while reassuring others of their wellbeing and defending their competence in handling money, are some of the responsibilities that disabled people must face when managing their finances. More worryingly, some disabled participants, especially those from different cultural backgrounds, do not know about the principles of self-directed support and do not have access to the scheme. This is illustrated in these quotes from people from Chinese backgrounds describing their social care experience:

“No one ever mentioned personal budgets to me, the Chinese community worker never told me about this.”^{[footnote 37]}

“(I’ve) never heard of personal budgets.”^{[footnote 38]}

Because of this, disabled people from ethnic minority communities – those who are not White British – can be excluded from information or uninformed about the services available to them.

2. Experience of access to care

When it comes to accessing care, a primary concern relates to the structural, administrative, and organisational issues in the relationships between care providers and care users. Formal and informal carers and disabled people say that the current organisation of social care and support – along with the financial strain on the care and support system during years of austerity – make it difficult to access care.^{[footnote 39]}, ^{[footnote 40]}

Poor working conditions and low wages make it difficult for staff to continue their roles, as evidenced by low retention rates in workplaces.^{[footnote 41]}, ^{[footnote 42]}, ^{[footnote 43]} This low staff retention and high levels of staff turnover affect disabled people’s ability to access care and support. Because of this, many disabled people go without their appointments for substantial periods because new care and support staff need to be employed and trained up, and new relationships must be built.^{[footnote 44]}, ^{[footnote 45]} Such disruptions have a negative effect on the quality of care as the perceived benefit of the specific support for care receivers is often contingent on continuity and consistency of care.^{[footnote 46]} In addition, disabled people experience heightened instability and insecurity.^{[footnote 47]} 

Finally, it is outlined that access to care also depends on terms set by the care providers but also interpreted by the care receivers and on disabled people’s ability to claim agency. For example, some people with certain health conditions are not considered to be disabled enough to access full support and end up using privately paid systems.^{[footnote 48]} Others – including people with visual impairments – do not have sufficient ability and agency to advocate for their own needs and miss out on care and support as a result.^{[footnote 49]}

Accessing information to access care

Access to care is also determined by disabled people’s ability to access information about care. For many disabled people, accessing and processing information, and then acting on the information, are significant cornerstones in advocating for their own needs and in eventually accessing care. Many disabled people rely on verbal information and on their relationships with family members, especially since it is the family members who help them process important information about social care and support.^{[footnote 50]} Disabled people also generally appreciate being able to access information and social media through modern technology and the internet.^{[footnote 51]} But written information accessed this way is experienced as quite difficult to process.^{[footnote 52]} Written information is often considered less digestible than verbal information, especially when it is relayed by family members.^{[footnote 53]} This is evidenced by a service user who states:

“That helps yeah, she can read it out for me or she can explain to me what’s going on, it’s easier to take it verbal.”^{[footnote 54]}

Disabled people can appreciate having someone to read such information. They also point out the importance of trust when accessing information about potential care systems and support initiatives. 

“I’ve got a lot of trust in my GP. […] …this consultant I don’t know yet. […] …and I suspect, as time goes on, maybe it will be, it’ll be different. […] I put them neck and neck, and I think at the end of the day when it goes further, it’s the consultant who becomes more trusted on this, because he’s going into things further.” (disabled participant)^{[footnote 55]}

“I have more faith in the [voluntary organisation adviser]. I think that’s because… I feel that he is being more helpful […] it feels as if I’m told one thing by Social Services one day and something completely different the next.” (disabled participant)^{[footnote 56]}

It can take time to build trust in a new professional, and disabled people may have already established trust in their current practitioner or advisor. They have to deal with the different levels of expertise of their informants and there can be conflicting information between informants. The issue of accessing information about care can further vary by the kinds of impairments or linguistic needs people have. For example, disabled people who have visual impairments often find it particularly difficult to get information in an accessible form or medium.^{[footnote 57]} Linguistic differences and cultural barriers also play a significant role when accessing information.

“Language difference is the main difficulty. We cannot speak English, we cannot understand English, how do I know?” (disabled participant)^{[footnote 58]}

Cultural barriers can leave disabled people uninformed and stranded. Regardless of these obstacles, disabled people often feel badly or poorly informed, even with the common strategies of asking family members or friends for help.

“I didn’t really know before what it (personal budget) was for, but one of my friends, she went to a . . . a seminar or something, and they had a section on SDS (self-directed support) and what it could be used for and she passed the [information] on to us . . .. It’s basically about improving your life and, well, being able to go back to things that I could do when I wasn’t ill.” (disabled participant)^{[footnote 59]}

“Where and how to seek help?” (disabled participant)^{[footnote 60]}

Some disabled people might hear of the support available through word of mouth and such sharing of information can be incidental. Others may remain uninformed. Disabled people also report that they find out haphazardly, rather than systematically, what support is potentially available to them. 

“But again that was fluke. If I hadn’t have done the film, if I hadn’t have joined Arthritis Care, got the e-mail, done the film, seen the neurologist who said you’ve got, you know, problems with your feet that isn’t arthritis, all of this is, if you want to say destiny or fluke, I wouldn’t know, I wouldn’t know any of this stuff.” (disabled participant)^{[footnote 61]}

“I believe they now have somebody in their clinic 2 days a week that’s there, well for support to give like new patients to tell them about [voluntary organisation] and other things like that. But I’ve only heard about this second or third hand, I’ve not actually been told about it. The clinic, I think they still fall down by not giving you information, access to information, telling you about things that are going on.” (disabled participant)^{[footnote 62]}

Disabled people learn about their health problems or the support services available to them incidentally rather than by actively looking for this information. They highlight that even when they know about how to access care and support, the process of receiving that care is not straightforward.

“The initial interview to determine support, while thorough, couldn’t foresee how I would handle techniques and processes that hadn’t been tried prior to university.” (disabled participant)^{[footnote 63]}

Disabled people are not the only stakeholder group reporting back about the issues around information. And where carers, care providers and advocacy groups are concerned, the issues around accessing information are not merely with the agency and ability of disabled people. They are of a deep-rooted structural nature, namely the stigmatisation and prejudice among the wider society. Such societal failures are embedded in those working in the care and support sector:

“There is a lot still to be done by provider organisations about the information they provide to support choice and how support organisations market themselves. I can’t help feeling that there is a subtlety to it that hasn’t been picked up on yet. [. . .] I suspect it is going to be around personalities and organisational culture and attitudes and I think there is a long way to go.” (National Transitions Forum co-ordinator)^{[footnote 64]}

Changes in care provision at a wider societal level involve shifts in attitudes towards care, going beyond the accepted norms of the responsibility of support organisations and organisations being willing to give greater choice to disabled people.

Decision-making

Studies report on the relevance of decision-making concerning the experience of care and access to care. Just as gaining information is important when accessing care, so is the actual decision-making process. Some researchers invest much time and effort in exploring how decisions are made, and in identifying who the decision-makers are. Decision-makers could be disabled people themselves or their formal or informal carers.^{[footnote 65]}, ^{[footnote 66]}, ^{[footnote 67]}, ^{[footnote 68]}, ^{[footnote 69]}, ^{[footnote 70]} Policies suggest that the decision-making should lie with disabled people who have lived experience. But the reality is much more complex. Research highlights that disabled people like the idea of making their own decisions, but they feel left alone and incapable of making fully informed decisions. This can be because of issues around accessing information, for example.^{[footnote 71]}

“I have actually made some quite bad choices in regard to decision-making and I have been trying to forget about some of those decisions and actually I have tried to get on with my life and every day and continue on every day without having to reflect on those kind of decisions that had sort of affected me.” (service user)^{[footnote 72]}

Disabled people can ruminate about the bad choices they might have made. Some disabled people feel they cannot trust their own decision-making powers and abilities and so, they also feel left alone. In such situations it is the supported decision-making process that is preferred.^{[footnote 73]}

“[I am] not in favour of all this choice business … when you’re ill you need people to make choices for you … I simply want the best. I don’t want … to make choices where I don’t have the information myself as to how to make a decision … that’s up to the experts, to decide, not me.” (disabled participant)^{[footnote 74]}

“I might get anxious and everything else, and that is when the staff support will come in to sort of take some of the stress off me.” (service user)^{[footnote 75]}

The evidence suggests that the process of making decisions could be stressful for disabled people when all they need is help with their impairment or health condition. When it comes to financial matters, personal budgeting, the self-directed support scheme or decisions around transitions to care homes, for example, disabled people also tend to prefer to be supported.

“If I was on my own at home, and in control of it myself, I don’t know what I’d do with it, to be honest . . . I have to have somebody control that side of me.” (Participant with intellectual disabilities)^{[footnote 76]}

The decision-making process itself is experienced in a more nuanced way. For some disabled people, it is more about their choice being respected than being able to make a choice. Disabled people also talk about how the decision-making process can be empowering. But sometimes, such decision-making must meet the approval of their immediate family or carer. 

“I feel very confident that like if I have made my own decision and people accept it and then I would have felt I would have achieved something that hadn’t really been achieved before, and that I wouldn’t have not needed anybody else to go through while making that decision.” (service user).^{[footnote 77]}

“They wouldn’t let me come back here, no, they wouldn’t let me go back to my bungalow, I mean. Because they were saying “Oh, you should go, Mum”, […] Perhaps they were right. But there’s no getting out of it (nursing home) when you’ve made that decision.” (older age participant)^{[footnote 78]}

On one hand, the process of decision making can be gratifying and reinforce a sense of agency and independence. On the other hand, disabled people can feel bound by the decisions they make. As research shows, the decision-making process and the experience of making or not making choices depends on a variety of factors. The above quotes highlight that the result of a choice, whether it has a good or bad outcome, and the influence of others during the information-gathering of the decision-making process are 2 such factors. But it is the type of decision and what aspect of the care and support it affects that plays the most significant role in how disabled people feel about their decision-making.^{[footnote 79]}

Transitions 

One of the most significant aspects of social care and support relates to accessing information and making decisions at transition points. For disabled people, such a transition may happen from one kind of support to another, such as from a supported environment to a more self-directed environment^{[footnote 80]}, ^{[footnote 81]} and from one educational setting to another.^{[footnote 82]} The transition can also be difficult between care centres, such as from children’s care providers to adult care providers,^{[footnote 83]}, ^{[footnote 84]}, ^{[footnote 85]}, ^{[footnote 86]}, ^{[footnote 87]}, ^{[footnote 88]}, ^{[footnote 89]} or between their own home and assisted living or residential care homes.^{[footnote 90]}, ^{[footnote 91]} Regardless of the kinds of transitions that disabled people experience, the issues and concerns are largely the same across them all. Participants and their formal and informal carers highlight the importance of having enough and relevant information when planning the transition.^{[footnote 92]}, ^{[footnote 93]}, ^{[footnote 94]}, ^{[footnote 95]}

“I was told about the transfer and I would be meeting the new [AMHS keyworker] and the transfer would happen slowly … they explained how different it would be.” (Mental health service user)^{[footnote 96]}

Research also suggests that efficient transition planning rarely happens.^{[footnote 97]}

“We’re still trying to think what things she might be able to do and what other kind of opportunities there are out there that we could use funding to support her…We have been trying to do transition planning literally for years, but because she’s not in her sixth year and it’s not absolutely urgent, it’s really difficult to get agencies together and take that on.” (non-disabled family member of a young disabled person)^{[footnote 98]}

Transition planning is a process in education of planning the adjustment of disabled children into their educational setting when they move from one educational level to another – for example, from primary to secondary school, or high school to further education.^{[footnote 99]} Parents of young disabled people can feel at a loss to know what facilities to engage their growing child with and the right support to get for this. And where transition planning does happen, that process may not necessarily be satisfactory either. The main issues around transitions are practical and pragmatic, especially where financial consequences may be concerned.

“The voluntary organisations like Sense are all full up, so when Jane leaves school, there’s no spaces in adult services, they’ve just closed the doors on applicants. There is a real concern about planning for the future, because of a lack of resources.” (non-disabled parent of a young disabled person)^{[footnote 100]}

As such, a shortage of transition services for a child going from one developmental milestone to another, such as adolescence to adulthood, can leave parents feeling stranded. The actual experience of transition with other disabled groups is more positive, with participants highlighting ways in which their transition experiences led to better living circumstances or experiences of empowerment and self-worth. 

“Fantastic [y]. I have my own bedroom, my own kitchen, my own bathroom [y]. Nice, cos at [hostel] I had to share [y] It’s a lot better, it’s a lot bigger [y].” (disabled participant)^{[footnote 101]}

“The adult services they don’t tell your parents or anything, everything’s confidential and it’s between you and the person [clinician] so it’s much better, it’s like a lot less stress.” (disabled participant)^{[footnote 102]}

“He [the teacher] said I should go to college and do the Step course cos it would give me more confidence and cos I’m usually shy to people and he said it would give me more confidence to talk more to people and give me more qualifications.” (disabled participant)^{[footnote 103]}

Overall, understanding the information needed to access care involves the carers of disabled people, healthcare professionals and the wider services. Furthermore, the willingness and ability of social services to provide this care depends on wider societal attitudes. Making fully informed decisions, such as moving to a different residential setting, can be daunting for disabled people as they are responsible for their decisions. Lastly, planning the transition between different educational settings is less well-defined and often constrained by limited availability of transition services. In contrast, the transition to a different residential setting is wholesome based on the evidence reviewed.

3. Experience of care relationships 

Where studies discuss the experience of care relationships, they often do so implicitly rather than there being a specific research focus in the studies – for example, in the context of shared and democratic processes of decision-making.^{[footnote 104]}, ^{[footnote 105]} This is why this theme has been further divided into the 4 subthemes, which offer an insight into some of the experiences of relationships between disabled people and their formal and informal carers, a relationship that is characterised by power dynamics between the carers and the people who need care and assistance.^{[footnote 106]}, ^{[footnote 107]}, ^{[footnote 108]}, ^{[footnote 109]}

Personal assistants

In the evidence, care relationships are most openly discussed in the context of personal assistants and how difficult it may be to negotiate that relationship. Trust and friendship are required in care relationships. Equally, the relationship is marked by the power hierarchy between carers and the person requiring care, and also in the employee and employer relationship when self-directed support is concerned. 

“You have to ask them to do things, but if they don’t want to do it, or if they’ve done something wrong, you have to say to them “no I don’t want it done like that”.” (disabled participant)^{[footnote 110]}

“And it works both ways. If she needs to be somewhere earlier, she tells me and she goes! I don’t sit there with a stopwatch, ‘Oh, you’re 15 minutes due’. Not that! No. Adult relationship. And she knows what to do and I respect her and she respects me. Adults.” (disabled participant)^{[footnote 111]}

“They are friends in the same way a work colleague might be a friend. We can be on friendly terms with each other. I believe this helps the relationship, but they are doing a job and both parties shouldn’t forget this.” (disabled participant)^{[footnote 112]}

Where successful caring relationships develop, disabled people and their carer have mutual respect, can manage expectations well and have a genuine concern for each other. In fact, many disabled participants across different studies commented on the real difficulty of managing the balance between being informal and friendly and remaining formal, while recognising that this relationship is not true friendship. 

“I don’t say much . . . you have polite banter, but I think you still have to be careful what you say. They talk about your family. I talk about my family in general.(…) ‘because you don’t know what they will say to someone else’ – and that by restricting this information she was ‘protecting my own family’.” (disabled participant)^{[footnote 113]}

“I just very much wanted someone who would be my friend really, and take me out and do nice things.… So, with L, because I am paying her to be my friend – sounds awful – but I say what I would like to do, and she fits in with me, as opposed to the other way round.… she is my friend, but she’s not my friend.” (disabled participant)^{[footnote 114]}

Communicating well and having shared values can build friendship and a lasting relationship between the disabled person and their carer. Yet, there is an underlying expectation of maintaining the boundary between the disabled person and the carer, and being a paid carer can have an effect on this boundary.

On the other hand, barriers of communication do develop between care and support staff and disabled people, which significantly impacts the lived experience of disability. 

“Some people listen to you and some people don’t.” (disabled participant)^{[footnote 115]}

Where communication has been found difficult, it also emerged that multi-agency resources and passport-type communication tools are particularly helpful in providing holistic care and support. 

Intersectionality 

Where care relationships become a topic of the research conversations in interviews and focus groups, disabled and non-disabled participants highlight the concern that intersectional experiences are often ignored in the care and support sector.^{[footnote 116]}, ^{[footnote 117]}, ^{[footnote 118]}, ^{[footnote 119]}, ^{[footnote 120]} In short, disabled people are treated as disabled regardless of their wider personal identities and characteristics. This way of approaching the care relationship is particularly problematic when disabled people may require guidance or help in relation to their social skills, experiences and backgrounds.

The experience of masculinity and the importance of male role models and relationships are discussed in relation to the experience of Duchenne muscular dystrophy.^{[footnote 121]}, ^{[footnote 122]} For the male participants with Duchenne muscular dystrophy, masculinity plays an important role in the relationship and, as it implies, the carers’ internal attitude towards them.

“They think I’m a bit more fragile than I am. Making decisions about the support I get is really important. It gives me more power and makes me feel . . . yeah. But I am in control, it is my – I mean it’s my life, so.” (Participant with duchenne muscular dystrophy)^{[footnote 123]}

“They seem to be completely gender (it’s not even gender)- neutral, because gender’s not even in there. I think the actual impact of social care can be incredibly emasculating, if it is set up in such a way that it takes away your independence and your autonomy.” (Participant with duchenne muscular dystrophy)^{[footnote 124]}

People with Duchenne muscular dystrophy may feel that their gender identity is ignored, they are infantilised and their sexuality is suppressed in their relationship with their carer. Similarly, research shows that cultural experiences are often not catered for or completely ignored. Disabled people’s cultural background has an impact on the care relationship, as the kinds of approaches to personal care may be different.

“I read Namaaz [Islamic prayer offered 5 times a day] you have to be cleaned and you know covered properly”. (disabled participant)^{[footnote 125]}

Carers may also be unaware of or insensitive to these religious practices and must learn about such religious practices as part of their caring role. For many disabled participants, the food that is served is one such example where culture-specificity needs to be accounted for:

“I eat pork, but I don’t eat beef and I don’t eat lamb because of my religion.” (disabled participant)^{[footnote 126]}

“The most important thing is food. We Chinese, you know what I eat is simple Chinese meals. Unless you can employ a westerner who can prepare Chinese food but that is impossible.” (disabled participant)^{[footnote 127]}

“We can’t have like Christian food. White people eat their own food.” (disabled participant)^{[footnote 128]}

“In the past, the Chinese luncheon club delivered Chinese meals to me. Because of the funding cut, it has stopped.” (disabled participant)^{[footnote 129]}

This evidence demonstrates how different cultures have their own cuisines and food restrictions, and knowledge of such food preparations are rarely shared between cultures. Such cultural differences could become contentious in the caring relationship. Besides, support services may not always meet these culturally-defined dietary requirements. Cultural differences also play a role when it comes to linguistic differences and the everyday communication between carers and those who need care.

“You know when you cannot speak the language, you cannot communicate with others. It’s very troublesome . . . even if the social worker comes to see us, it’s no good if we cannot communicate with them.” (disabled participant)^{[footnote 130]}

“If there is Chinese staff helping me, that’s much better. At least we can understand each other.” (disabled participant)^{[footnote 131]}

But it is not only the practicalities and pragmatics in the relationship that are affected by cultural understanding, or the lack of it. In the evidence, disabled participants highlight the importance of being able to understand the intricacies of cultural upbringing and socialisation, where disabled people from various cultural backgrounds may feel differently about receiving care in the first place. 

“It’s the habit of Chinese, we like being self-reliant. We seldom ask for help. We are not  outspoken, so very often our family helps out as much as they can. However, apart from my daughter, I have no relatives to help me.” (disabled participant)^{[footnote 132]}

In some cultures, social support and care are talked about so little that people begin to assume that they are the only disabled person in their entire community. This in turn makes the experience of loneliness and isolation worse. This is particularly prominent in a study within the Muslim community, where a Pakistani man with dementia said:

“I don’t know anybody who has suffered with dementia, so I can’t even relate to anybody.” (disabled participant)^{[footnote 133]}

In short, communication difficulties between English and non-English speakers can constrain the caring relationship. Likewise, difficulty with acculturation into British culture may alienate disabled people who come from ethnic minority groups in engaging with the support services. Equally, carers and service providers may lack the knowledge of the language, cultural customs, mannerisms and nuances of disabled people with ethnic minority backgrounds. The evidence on cultural barriers was limited to certain cultures (for example, Chinese and Pakistani) and so generalising these cultural barriers to other cultures must be done cautiously.

Lived experience of disability

Another way for disabled people to talk about their relationships and connections with formal and informal carers, is by expressing their lived experience of disability – such as what it feels like to be disabled in contemporary society. In the context of social care and support, many stakeholders mention their concerns regarding limited funding and ever-decreasing resources.^{[footnote 134]}, ^{[footnote 135]}, ^{[footnote 136]}, ^{[footnote 137]} Some disabled participants highlight that disabled life is often considered less valuable or entirely worthless in a time where assisted euthanasia returns to the media spotlight.^{[footnote 138]} The experience of being disabled is still intrinsically linked with stigmatisation, discrimination, bias, and prejudice. Social care and support, and relationships with carers, are instrumental in ensuring that disabled people can deal with their everyday lived experience of disability.^{[footnote 139]}, ^{[footnote 140]}

“They [local teenagers] started again, banging the doors and throwing things and I get very, very frightened and nervous but it has been going on for years when I was a little girl I used to get beaten up.” (disabled participant)^{[footnote 141]}

“Well, there’s a mixture of good and bad neighbours at the flats, bad ones…they stomp on people’s ceilings and keep them awake all night…One time I went up there and spoke to him about it, and he threatened to punch me in the face.” (disabled participant)^{[footnote 142]}

“They don’t want disabled people there I mean my friends, my friend next door to me he is blind and he is gay, not gay I don’t know what is the word but they don’t like him, the bloke across the road said to me oh people like that should be put to death they shouldn’t be alive and that’s how people are. My friend uses a wheelchair and he wanted to put a bay over there so one of the neighbours across the road said oh he should be put down, he shouldn’t be alive in a wheelchair, all people like that shouldn’t be in the community, that’s the way life is you know, I might be thinking wrong what I am saying but it is the truth.” (disabled participant)^{[footnote 143]}

These extracts show the animosity towards disabled people, some of whom have endured this abuse from childhood. When disability is at the intersection of another protected characteristic, such as sexuality, the threat could be greater. Because of this, disabled people can feel threatened and unsafe in their neighbourhoods. At the same time, it is only through interactions with others that disabled people are able to fulfil their dreams, and maintain or develop their independence and autonomy.^{[footnote 144]}, ^{[footnote 145]}, ^{[footnote 146]}, ^{[footnote 147]}, ^{[footnote 148]}

“I used to do karate and go to the gym and do boxing and a bunch of other things, and I was relaxed when I got home because I would then watch some TV and then go to bed. But since I don’t have a job I don’t do all those hobbies and stuff. I don’t relax. I’m stuck here watching crap TV all the time…most of the time I’m just stuck by myself, bored.” (disabled participant)^{[footnote 149]}

But for some disabled people, the experience of stigma and what is considered as the “ordinary” world is so difficult that they withdraw from activities and begin to prefer a more isolated existence.

“The outside world is too much for people like me… It’s too much pressure… too much. The outside world is a madhouse… the outside world. We ask a question, they just ignore you, just walk by… without saying a word. The outside world is like this… No use feeling alive sometimes… you just want to be dead.” (Participant with learning disabilities)^{[footnote 150]}

“I just like being by myself.” (Autistic participant)^{[footnote 151]}

The social stress of interacting with others can be overwhelming, which can force disabled people into solitude.

Advocacy and self-advocacy groups

Although not specifically a care relationship, studies have explored the relevance of advocacy and self-advocacy groups.^{[footnote 152]}, ^{[footnote 153]}, ^{[footnote 154]}, ^{[footnote 155]}, ^{[footnote 156]}, ^{[footnote 157]}, ^{[footnote 158]} For disabled people, their formal and informal carers and family members, advocacy and self-advocacy groups are particularly empowering and enabling for disabled people. They find they become more confident, more independent and autonomous in their own lives as a result.

“It’s helping us you know. Its really good therapy for us all. I think it’s a good thing to speak up for yourself rather than people talking up for you. It has done a lot for us unless you speak up nobody will know what you are thinking.” (3 disabled participants)^{[footnote 159]}

“The memory clinic (group sessions) was helpful in that I realised so many other people doing just the same, I mean, have the same problem. That’s always a help, knowing you’re not quite so odd”. (disabled participant)^{[footnote 160]}

“It was absolutely amazing it opened our eyes to a lot of things. There were a lot of things now going back a couple of years ago that we were not able to do and have our rights. Now everybody has a right of their own.” (disabled participant)^{[footnote 161]}

Having someone speak up for the disabled community can give disabled people an avenue for their experiences to be heard and for them to voice their experiences. For the family members, formal and informal carers, advocacy is equated with empowerment that comes through working through the different stakeholders’ views, experiences, and resources. 

“An advocate can step back and say, right, I hear what you’re saying services, but this is what Jennifer’s saying, let’s get that solution. That’s where an advocate becomes key doesn’t it? It’s not just you shouting at services and that service trying to give you something you don’t want.” (non-disabled parent of a person with learning disabilities)^{[footnote 162]}

Evidence shows that having someone advocate or speak for disabled people can give disabled people access to various resources. For disabled participants, the camaraderie and shared lived experiences among those that are active in self-advocacy groups are particularly helpful.

“If we have a problem. If we are discussing say bullying, say, for example, we could probably go back to the past time, when somebody has been a bully, or somebody has been bullied by someone.” (Participant with intellectual disabilities)^{[footnote 163]}

Advocates can run such discussions and bring such issues to bear. But as is the case in other circumstances and situations, not all advocacy work is experienced in a purely positive way. For some, the powers of advocacy and self-advocacy groups do not go far enough, as the carers become involved in important decisions. 

“I tell my carers that I want to move but they tell me they want me to stop there. Everyone tells me to stay where I am.” (disabled participant)^{[footnote 164]}

“Social workers. Social workers get in the way…. Because every time when I try to speak up for myself they always get involved. So really it’s not my choice.” (disabled participant)^{[footnote 165]}

These views reveal the intrusiveness of carers and reiterate the wider social structural issues, such as stigma, that could stifle the willingness to enable disabled people. On the whole, advocacy groups and organisations can liberate disabled people to speak openly about their experiences.

5. Discussion

The findings show that the experience of care and access to care is a very complex issue that is characterised by policy decisions as well as societal issues and changes. 

Problematically, a themed report like this one is also oversimplifying matters and concerns as lived experience research aims to give a better, but far from complete, understanding of the issues faced by disabled people and people with health conditions. For example, the publications consulted for this report considered impairments ranging from autism to duchenne muscular dystrophy, from dementia with or without visual impairment to Deafness or Deaf blindness, from Down’s syndrome to mental health issues. 

Some social and psychological issues, such as stigmatisation or lack of resources and the resulting personal and existential insecurities, will be similar across all types of impairment. But the experiences of these issues can vary greatly between disabled people. Some experiences are also specific to particular types of impairment. For example, stigmatisation in the context of HIV^{[footnote 166]} is very different from the stigmatisation experienced by someone who may be autistic.

Additionally, impairments themselves are often not considered in the same vein. Depending on the researchers’ disciplinary background, intellectual disabilities may be called ‘learning disabilities’ or ‘special educational needs’. As far as the labels go, there are differences in how people perceive those labels and how the experience of disability is expressed. This has an impact on how social care and support are accessed, as some people will be more confident than others in their own agency and advocacy based on such labels. The same is true of a category like ‘mental health issues’, which may be a medical diagnosis in itself or a symptom or co-morbidity of a different diagnosis. 

Finally, the studies consulted in this review report not just on findings from research in the UK, but on results from a wide range of countries. In some studies, the UK itself is separated into England, Scotland, Wales and Northern Ireland, while in other studies 2 or all of the countries governed in the devolved powers are not included. Many studies refer to England and Scotland, or to the UK, and it is not entirely clear if participants from other countries were involved in the study or how many there were. In addition, country-specific comparisons are made to studies relating to other countries, such as Canada or Denmark. One publication alone uses the contexts of 6 countries – the Czech Republic, Poland, France, Italy, Spain and the UK.^{[footnote 167]} Generally, it is felt that the support systems or approaches to policies and practices are quite different, but that disabled people’s experiences of care and accessing care are so similar that a comparison is warranted.

Having considered the findings in the 3 main themes and 11 sub-themes, we now return to the research questions.

1. What are disabled people’s experiences of using social care and support?

It is evident that disabled people’s experiences vary, with both positive and negative experiences depending on:

• their personal circumstances
• the specific care or support they need
• their levels of impairment and independence
• the care staff’s personal investment

Generally, it is felt that personalisation in social care and support is important. But it should not outweigh someone’s level of comfort when it comes to taking decisions or transitioning from one care system to another, for example. Although personalised care is generally experienced as enabling, sometimes it feels more reassuring for disabled people to have the support of strong leadership and decisive care staff, who may help with the responsibility of taking decisions. 

2. What are disabled people’s relationships with their personal assistants and other care staff?

Throughout the studies, it emerges that disabled people can build many meaningful and positive relationships with their personal assistants and care staff. But as with all relationships, these connections are also subject to external factors that may affect the relationship and its functioning. For example, significant staff workload, poor retention rates and high staff turnover mean that disabled people can struggle to have continuity and consistency in their care. This leads to hampered relationships overall. Where relationships are positive, that positivity may become dampened if care staff are not equipped or trained to consider disabled people’s intersectional experiences. In short, although the relationships are positive and good, they are superficial and do not function like ‘real-life’ relationships and friendships. 

3. What barriers do disabled people experience when using social care and support, and how do these barriers relate to disabled people’s sense of independence and choice of where and with whom they live?

Disabled people, their families, and their informal carers agree that a sense of power and agency are crucial when it comes to using and accessing social care and support. Disabled people’s  circumstances, such as their level of impairment, may mean that decisions have to be taken that are unpopular with all stakeholders. When such situations arise, people feel they lose their sense of independence and autonomy. Disabled people with informal carers in their family feel more enabled than those who do not. Ultimately, disabled people and most of their family members and informal carers aim for disabled people to be independent and live on their own as much and as long as possible. Transitions to residential care homes are the last resort when all other options, such as assisted living, have failed. 

4. What are the impacts of these barriers on disabled people’s feelings of inclusion in the society?

Many factors have an effect on disabled people’s feelings of inclusion in society. It is not clear whether where someone lives is more relevant, or what types and levels of impairments they have. In modern society, disabled people still feel excluded from living effectively alongside non-disabled people. Cultural customs and language ability can restrict disabled people’s ability to be heard and understood. Equally, relying on a carer or lacking the professional expertise to relay information can restrict their access to information about certain benefits that are available to them.

5. What inclusive support schemes, designs, adaptations, and services can improve independent living and inclusion in the community, and to prevent isolation or segregation from the community services?

Disabled people report very positive experiences with schemes that enable socialisation in society. For most disabled people, being able to take on active roles in society, such as bagging up groceries in the supermarket, or being part of a peer support and self-advocacy group, is enabling and empowering. The closure of daycare centres and reduction in short-break schemes means that many disabled people feel isolated in their immediate surroundings. Similarly, financial pressures have reduced community services for people from different cultural backgrounds, which leads to feelings of alienation in addition to the commonly-experienced isolation. 

Overall, across the studies, it is clear that social care and support need to be seen as more nuanced than as a means of meeting particular needs. The development of frameworks for social care over the decades has certainly built effective routes to social care and support. But complacency in existing structures can perpetuate gaps in stigmatisation and choices available to disabled people.

6. Conclusion

Disabled people have protected and promoted rights under:

• the European Convention on Human Rights (ECHR)
• the Human Rights Act (1998)
• the Scotland Act (1998)
• the United Nations Convention on the Rights of Persons with Disability (UNCPRD 2007)
• the Equality Act (2010)

These rights include:

• the respect for disabled people
• the right to have a private life
• the right to marry and have a family
• the right to education
• protection from discrimination

At the heart of this is the foundation that disabled people have a right to dignity, autonomy, and independence.

This themed report demonstrates how lived experience research can give a better – but far from complete – understanding of the issues faced by disabled people and people with health conditions. 

The evidence highlights that it is not always beneficial to have one approach for everyone, such as self-directed support. Some disabled people thrive under such schemes, others find them destabilising. 

It is also not a simple matter of having a right or wrong way about taking decisions and accessing information to accessing care. Instead, an approach is needed that requires all stakeholders to work together on the right provision in each individual case.^{[footnote 168]} This is ultimately the embodiment of personalised care.

Annex: Bibliography

Publications from “independent living” database included in the review

Abbott, D., Jepson, M., and Hastie, J. (2016). Men living with long‐term conditions: Exploring gender and improving social care. Health and Social Care in the Community, 24(4), 420-427.

Abbott, D., and Carpenter, J. (2014). ‘Wasting precious time’: young men with Duchenne muscular dystrophy negotiate the transition to adulthood. Disability and Society, 29(8), 1192-1205.

Barelds, A., Van De Goor, I., Van Heck, G., and Schols, J. (2010). Quality of care and service trajectories for people with intellectual disabilities: Defining the aspects of quality from the client’s perspective. Scandinavian journal of caring sciences, 24(1), 164-174.

Bartlett, R. (2022). Inclusive (social) citizenship and persons with dementia. Disability and Society, 37(7), 1129-1145.

Baxter, K. (2013). Changing choices: disabled and chronically ill people’s experiences of reconsidering choices. Chronic illness, 9(2), 116-132.

Baxter, K., and Glendinning, C. (2011). Making choices about support services: disabled adults’ and older people’s use of information. Health and social care in the community, 19(3), 272-279.

Beadle‐Brown, J., Leigh, J., Whelton, B., Richardson, L., Beecham, J., Baumker, T., and Bradshaw, J. (2016). Quality of life and quality of support for people with severe intellectual disability and complex needs. Journal of Applied Research in Intellectual Disabilities, 29(5), 409-421.

Bigby, C., Bould, E., and Beadle-Brown, J. (2017). Conundrums of supported living: The experiences of people with intellectual disability. Journal of Intellectual and Developmental Disability, 42(4), 309-319.

Boyce, M., Munn‐Giddings, C., Smith, L., and Campbell, S. (2010). Innovatory features and challenges facing mental health user‐led organisations. Mental Health Review Journal, 15(2), 34-42.

Brooks, H. L., Bee, P., Lovell, K., and Rogers, A. (2020). Negotiating support from relationships and resources: a longitudinal study examining the role of personal support networks in the management of severe and enduring mental health problems. BMC psychiatry, 20, 1-13.

Budge, G., Mitchell, A., Rampling, T., Down, P., and Bridge Collective. (2019). “It kind of fosters a culture of interdependence”: A participatory appraisal study exploring participants’ experiences of the democratic processes of a peer‐led organisation. Journal of Community and Applied Social Psychology, 29(3), 178-192.

Butterworth, S., Singh, S. P., Birchwood, M., Islam, Z., Munro, E. R., Vostanis, P., … and Simkiss, D. (2017). Transitioning care‐leavers with mental health needs:‘they set you up to fail!’. Child and Adolescent Mental Health, 22(3), 138-147.

Chapman, M., Bannister, S., Davies, J., Fleming, S., Graham, C., Mcmaster, A., … and Whittell, B. (2012). Speaking up about advocacy: findings from a partnership research project. British Journal of Learning Disabilities, 40(1), 71-80.

Chapman, R. (2014). An exploration of the self‐advocacy support role through collaborative research:‘There should never be a them and us’. Journal of Applied Research in Intellectual Disabilities, 27(1), 44-53.

Clarke, C. L., Keyes, S. E., Wilkinson, H., Alexjuk, E. J., Wilcockson, J., Robinson, L., … and Cattan, M. (2018). ‘I just want to get on with my life’: a mixed-methods study of active management of quality of life in living with dementia. Ageing and Society, 38(2), 378-402.

Clarke, R., Camilleri, K., and Goding, L. (2015). What’s in it for me? The meaning of involvement in a self-advocacy group for six people with intellectual disabilities. Journal of Intellectual Disabilities, 19(3), 230-250.

Davidson, G., Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., … and Webb, P. (2018). Supported decision making-experiences, approaches and preferences.

Davies, J., and Morgan, H. (2010). What kind of a future for young people with Down’s Syndrome? The views and aspirations of young people and families. Tizard Learning disability review, 15(4), 22-29.

Dixon, J., Trathen, A., Wittenberg, R., Mays, N., Wistow, G., and Knapp, M. (2019). Funding and planning for social care in later life: a deliberative focus group study. Health and Social Care in the Community, 27(5), e687-e696.

Docherty, D. A., and Chapman, M. J. (2013). The Leopard Has Changed Its Spots: Experiences of Different Ways in Which Staff Support People with Learning Disabilities. Ethics and Social Welfare, 7(3), 277-281.

DRILL National Advisory Group, Disability Action Northern Ireland and The Northern Ireland Social Care Council.

Edwards, J., and Boxall, K. (2013). Living a ‘normal life’? Formal and informal support in the lives of adults with cystic fibrosis. Scandinavian Journal of Disability Research, 15(2), 143-155.

Ellison, C., White, A., and Chapman, L. (2011). Avoiding institutional outcomes for older adults living with disability: The use of community-based aged care supports. Journal of Intellectual and Developmental Disability, 36(3), 175-183.

Fisher, K. R., Robinson, S., Neale, K., Graham, A., Johnson, K., Davy, L., and Hall, E. C. (2021). Impact of organisational practices on the relationships between young people with disabilities and paid social support workers. Journal of Social Work, 21(6), 1377-1398.

Gajewska, U., and Trigg, R. (2016). Centres for people with intellectual disabilities: Attendees’ perceptions of benefit. Journal of Applied Research in Intellectual Disabilities, 29(6), 587-591.

Giesbers, S. A., Hendriks, L., Jahoda, A., Hastings, R. P., and Embregts, P. J. (2019). Living with support: Experiences of people with mild intellectual disability. Journal of Applied Research in Intellectual Disabilities, 32(2), 446-456.

Gilmartin, A., and Slevin, E. (2010). Being a member of a self‐advocacy group: experiences of intellectually disabled people. British journal of learning disabilities, 38(3), 152-159.

Glasby, J., Needham, C., Allen, K., Hall, K., and McKay, S. (2018). The Goldilocks question: what size is ‘just right’ for social care providers?. International Journal of Care and Caring, 2(1), 65-87.

Gore, N. J., McGill, P., and Hastings, R. P. (2021). Personalized goals for positive behavioral support: engaging directly with children who have intellectual and developmental disabilities. Journal of Child and Family Studies, 30, 375-387.

Graham, K. (2015). Cash payments in context:(self-) regulation in the new social relations of assistance. Disability and Society, 30(4), 597-613.

Gridley, K., Brooks, J., and Glendinning, C. (2014). Good practice in social care: the views of people with severe and complex needs and those who support them. Health and social care in the community, 22(6), 588-597.

Hamilton, L. G., Mesa, S., Hayward, E., Price, R., and Bright, G. (2017). ‘There’s a lot of places I’d like to go and things I’d like to do’: the daily living experiences of adults with mild to moderate intellectual disabilities during a time of personalised social care reform in the United Kingdom. Disability and Society, 32(3), 287-307.

Hamilton, S., Tew, J., Szymczynska, P., Clewett, N., Manthorpe, J., Larsen, J., and Pinfold, V. (2016). Power, choice and control: How do personal budgets affect the experiences of people with mental health problems and their relationships with social workers and other practitioners?. The British Journal of Social Work, 46(3), 719-736.

Heid, A. R., Eshraghi, K., Duntzee, C. I., Abbott, K., Curyto, K., and Van Haitsma, K. (2016). “It depends”: Reasons why nursing home residents change their minds about care preferences. The Gerontologist, 56(2), 243-255.

Hersh, M. (2013). Deafblind people, communication, independence, and isolation. Journal of deaf studies and deaf education, 18(4), 446-463.

Hewett, R., Douglas, G., and Keil, S. (2014). Post-16 transition experience of visually impaired young people in England and Wales: Early findings from a longitudinal study. British Journal of Visual Impairment, 32(3), 211-222.

Hitchen, S., Williamson, G. R., and Watkins, M. (2015). Personal budgets for all? Implementing self-directed support in mental health services. Action Research, 13(4), 372-391.

Hodge, S., Thetford, C., Knox, P., and Robinson, J. (2015). Finding your own way around: Experiences of health and social care provision for people with a visual impairment in the United Kingdom. British Journal of Visual Impairment, 33(3), 200-211.

Hollomotz, A. (2014). Are we valuing people’s choices now? Restrictions to mundane choices made by adults with learning difficulties. British Journal of Social Work, 44(2), 234-251.

Hoole, L., and Morgan, S. (2011). ‘It’s only right that we get involved’: service‐user perspectives on involvement in learning disability services. British Journal of Learning Disabilities, 39(1), 5-10.

Hoskin, J. (2021). Troubling norms? Adults and teenagers with a life-limiting impairment in Denmark and England talk about their lives, support and future plans. European Journal of Special Needs Education, 36(3), 329-343.

Hovish, K., Weaver, T., Islam, Z., Paul, M., and Singh, S. P. (2012). Transition experiences of mental health service users, parents, and professionals in the United Kingdom: a qualitative study. Psychiatric rehabilitation journal, 35(3), 251.

Hughes, J., Davies, S., Chester, H., Clarkson, P., Stewart, K., and Challis, D. (2018). Learning disability services: User views on transition planning. Tizard Learning Disability Review, 23(3), 150-158.

Irvine, F., Wah Yeung, E. Y., Partridge, M., and Simcock, P. (2017). The impact of personalisation on people from Chinese backgrounds: qualitative accounts of social care experience. Health and Social Care in the Community, 25(3), 878-887.

Jacobs, P., MacMahon, K., and Quayle, E. (2018). Transition from school to adult services for young people with severe or profound intellectual disability: A systematic review utilizing framework synthesis. Journal of Applied Research in Intellectual Disabilities, 31(6), 962-982.

Jacobs, P., Quayle, E., Wilkinson, H., and MacMahon, K. (2021). Relationships matter!—Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities. British Journal of Learning Disabilities, 49(3), 329-340.

Karban, K., Paley, C., and Willcock, K. (2013). Towards support: evaluating a move to independent living. Housing, Care and Support, 16(2), 85-94.

Katzman, E. R., Kinsella, E. A., and Polzer, J. (2020). ‘Everything is down to the minute’: Clock time, crip time and the relational work of self-managing attendant services. Disability and Society, 35(4), 517-541.

Keyes, S. E., Clarke, C. L., Wilkinson, H., Alexjuk, E. J., Wilcockson, J., Robinson, L., … and Cattan, M. (2016). “We’re all thrown in the same boat…”: A qualitative analysis of peer support in dementia care. Dementia, 15(4), 560-577.

Keyes, S. E., and Brandon, T. (2012). Mutual support: A model of participatory support by and for people with learning difficulties. British journal of learning disabilities, 40(3), 222-228.

Larkin, M., Unwin, G., Iyer, M., Tsimopoulou, I., Zahid, S., Malik, K., … and Rose, J. L. (2018). Cultural affordance, social relationships, and narratives of independence: Understanding the meaning of social care for adults with intellectual disabilities from minority ethnic groups in the UK. International Journal of Developmental Disabilities, 64(3), 195-203.

Larkin, P., Jahoda, A., Macmahon, K., and Pert, C. (2012). Interpersonal sources of conflict in young people with and without mild to moderate intellectual disabilities at transition from adolescence to adulthood. Journal of Applied Research in Intellectual Disabilities, 25(1), 29-38.

Leece, J., and Leece, D. (2010). Personalisation: Perceptions of the role of social work in a world of brokers and budgets. The British Journal of Social Work, 41(2), 204-223.

MacIntyre, G. (2014). The potential for inclusion: young people with learning disabilities experience social inclusion as they make the transition from childhood to adulthood. Journal of Youth Studies, 17(7), 857-871.

Malik, K. J., Unwin, G., Larkin, M., Kroese, B. S., and Rose, J. (2017). The complex role of social care services in supporting the development of sustainable identities: Insights from the experiences of British South Asian women with intellectual disabilities. Research in developmental disabilities, 63, 74-84.

Malkani, R. (2021). Investigating the opportunities provided for young adults with special education needs and disabilities (SEND) to prepare for adulthood in a city in England. Support for Learning, 36(2), 238-257.

Manji, K. (2018). ‘It was clear from the start that [SDS] was about a cost cutting agenda.’Exploring disabled people’s early experiences of the introduction of Self-Directed Support in Scotland. Disability and Society, 33(9), 1391-1411.

Mansfield, R., and Burton, A. E. (2020). Exploring the meaning of quality of life for assisted living residents: A photo-elicitation study. Geriatric Nursing, 41(6), 812-821.

Manthorpe, J., Hussein, S., and Stevens, M. (2012). Communication with migrant workers: The perspectives of people using care services in England. Practice, 24(5), 299-314.

Marsland, D., White, C., and Manthorpe, J. (2019). The continuity of social care when moving across regional boundaries. Journal of Social Work, 19(5), 557-577.

McConkey, R., and Collins, S. (2010). Using personal goal setting to promote the social inclusion of people with intellectual disability living in supported accommodation. Journal of Intellectual Disability Research, 54(2), 135-143.

McConkey, R., Keogh, F., Bunting, B., and Iriarte, E. G. (2018). Changes in the self-rated well-being of people who move from congregated settings to personalized arrangements and group home placements. Journal of Intellectual Disabilities, 22(1), 49-60.

Medforth, N., and Huntingdon, E. (2018). Still Lost in Transition?. Comprehensive Child and Adolescent Nursing, 41(2), 128-142.

Mitchell, F. (2015). Facilitators and barriers to informed choice in self‐directed support for young people with disability in transition. Health and Social Care in the Community, 23(2), 190-199.

Mitchell, W. (2012). Perspectives of disabled young people with degenerative conditions on making choices with parents and peers. Qualitative Social Work, 11(6), 621-643.

Mitchell, W., Beresford, B., Brooks, J., Moran, N., and Glendinning, C. (2017). Taking on choice and control in personal care and support: The experiences of physically disabled young adults. Journal of Social Work, 17(4), 413-433.

Moran, N., Glendinning, C., Wilberforce, M., Stevens, M., Netten, A. N. N., Jones, K., … and Jacobs, S. (2013). Older people’s experiences of cash-for-care schemes: evidence from the English Individual Budget pilot projects. Ageing and Society, 33(5), 826-851.

Moss, A., and Miller, R. (2019). Models of community based integrated care for people with a learning disability and/or autism: evaluation findings from a national implementation programme. International Journal of Integrated Care (IJIC), 19.

Murphy, E., Clegg, J., and Almack, K. (2011). Constructing adulthood in discussions about the futures of young people with moderate‐profound intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 24(1), 61-73.

Newbigging, K., Ridley, J., McKeown, M., Machin, K., and Poursanidou, K. (2015). ‘When you haven’t got much of a voice’: an evaluation of the quality of Independent Mental Health Advocate (IMHA) services in England. Health and social care in the community, 23(3), 313-324.

Nind, M., Coverdale, A., and Croydon, A. (2021). Learning from each other in the context of personalisation and self-build social care. Disability and Society, 36(10), 1553-1573.

Norrie, C., Weinstein, J., Jones, R., Hood, R., and Bhanbro, S. (2014). Early experiences in extending personal budgets in one local authority. Working with Older People, 18(4), 176-185.

Nyman, S. R., Innes, A., and Heward, M. (2017). Social care and support needs of community-dwelling people with dementia and concurrent visual impairment. Aging and Mental Health, 21(9), 961-967.

Patel, S. K., Staarmann, B., Heilman, A., Mains, A., Woodward, J., and Bierbrauer, K. S. (2019). Growing up with spina bifida: bridging the gaps in the transition of care from childhood to adulthood. Neurosurgical Focus, 47(4), E16.

Pearson, C., Brunner, R., Porter, T., and Watson, N. (2020). Personalisation and the promise of independent living: where now for cash, care and control for disability organisations across the UK?. Scandinavian Journal of Disability Research, 22(1), 285-295.

Pearson, C., Watson, N., Gangneux, J., and Norberg, I. (2021). Transition to where and to what? Exploring the experiences of transitions to adulthood for young disabled people. Journal of Youth Studies, 24(10), 1291-1307.

Pilnick, A., Clegg, J., Murphy, E., and Almack, K. (2011). ‘Just being selfish for my own sake…’: Balancing the views of young adults with intellectual disabilities and their carers in transition planning. The Sociological Review, 59(2), 303-323.

Porter, T., Shakespeare, T., and Stöckl, A. (2020). Performance management: a qualitative study of relational boundaries in personal assistance. Sociology of Health and Illness, 42(1), 191-206.

Power, A., and Bartlett, R. (2019). Ageing with a learning disability: Care and support in the context of austerity. Social Science and Medicine, 231, 55-61.

Preece, D., and Jordan, R. (2010). Obtaining the views of children and young people with autism spectrum disorders about their experience of daily life and social care support. British Journal of Learning Disabilities, 38(1), 10-20.

Price, A., Newlove-Delgado, T., Eke, H., Paul, M., Young, S., Ford, T., and Janssens, A. (2019). In transition with ADHD: the role of information, in facilitating or impeding young people’s transition into adult services. BMC psychiatry, 19(1), 1-16.

Rabiee, P. (2013). Exploring the relationships between choice and independence: experiences of disabled and older people. British Journal of Social Work, 43(5), 872-888.

Rabiee, P., and Glendinning, C. (2010). Choice: what, when and why? Exploring the importance of choice to disabled people. Disability and Society, 25(7), 827-839.

Rapaport, P., Burton, A., Leverton, M., Herat-Gunaratne, R., Beresford-Dent, J., Lord, K., … and Cooper, C. (2020). “I just keep thinking that I don’t want to rely on people.” a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives. BMC geriatrics, 20, 1-11.

Reuzel, E., Bosman, A. M., Embregts, P. J., van Nieuwenhuijzen, M., and Jahoda, A. (2017). Perceptions and expectations of regular support meetings between staff and people with an intellectual disability. Journal of Intellectual and Developmental Disability, 42(2), 142-150.

Riazi, A., Bradshaw, S. A., and Playford, E. D. (2012). Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis. Disability and Rehabilitation, 34(24), 2095-2102.

Ridley, J., Newbigging, K., and Street, C. (2018). Mental health advocacy outcomes from service user perspectives. Mental Health Review Journal, 23(4), 280-292.

Roberts, H., Ingold, A., Liabo, K., Manzotti, G., Reeves, D., and Bradby, H. (2018). Moving on: Transitions out of care for young people with learning disabilities in England and Sweden. British Journal of Learning Disabilities, 46(1), 54-63.

Rodrigues, R. (2020). Caring relationships and their role in users’ choices: a study of users of Direct Payments in England. Ageing and Society, 40(7), 1469-1489.

Rome, A., Hardy, J., Richardson, J., and Shenton, F. (2018). Exploring transitions with disabled young people: Our experiences, our rights and our views. In Valuing Disabled Children and Young People (pp. 188-196). Routledge.

Rosenfeld, D., and Anderson, J. (2020). ‘The own’and ‘the wise’as social support for older people living with HIV in the United Kingdom. Ageing and Society, 40(1), 188-204.

Sakellariou, D. (2015). Towards the construction of a nicer life: subjectivity and the logic of choice. Anthropology in Action, 22(1), 46-53.

Salt, E., Melville, C., and Jahoda, A. (2019). Transitioning to adulthood with a mild intellectual disability—Young people’s experiences, expectations and aspirations. Journal of Applied Research in Intellectual Disabilities, 32(4), 901-912.

Scheibl, F., Farquhar, M., Buck, J., Barclay, S., Brayne, C., and Fleming, J. (2019). When frail older people relocate in very old age, who makes the decision?. Innovation in Aging, 3(4), igz030.

Shakespeare, T., Stöckl, A., and Porter, T. (2018). Metaphors to work by: the meaning of personal assistance in England. International Journal of Care and Caring, 2(2), 165-179.

Sines, D., Hogard, E., and Ellis, R. (2012). Evaluating quality of life in adults with profound learning difficulties resettled from hospital to supported living in the community. Journal of Intellectual Disabilities, 16(4), 247-263.

Small, N., Raghavan, R., and Pawson, N. (2013). An ecological approach to seeking and utilising the views of young people with intellectual disabilities in transition planning. Journal of intellectual disabilities, 17(4), 283-300.

Sosnowy, C., Silverman, C., and Shattuck, P. (2018). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29-39.

Spruin, E., Abbott, N., and Holt, N. (2018). Examining the experiences of a short break scheme amongst adolescents with disabilities (service users) and their parents. International Journal of Disability, Development and Education, 65(2), 148-162.

Stalker, K., MacDonald, C., King, C., McFaul, F., Young, C., and Hawthorn, M. (2018). “We could kid on that this is going to benefit the kids but no, this is about funding”: Cutbacks in services to disabled children and young people in Scotland. In Valuing Disabled Children and Young People (pp. 17-32). Routledge.

Stevenson, M., Savage, B., and Taylor, B. J. (2019). Perception and communication of risk in decision making by persons with dementia. Dementia, 18(3), 1108-1127.

Swallow, V., Forrester, T., and Macfadyen, A. (2012). Teenagers’ and parents’ views on a short-break service for children with life-limiting conditions: a qualitative study. Palliative Medicine, 26(3), 257-267.

Tew, J., Larsen, J., Hamilton, S., Manthorpe, J., Clewett, N., Pinfold, V., and Szymczynska, P. (2015). ‘And the stuff that I’m able to achieve now is really amazing’: The potential of personal budgets as a mechanism for supporting recovery in mental health. British Journal of Social Work, 45(suppl_1), i79-i97.

Thetford, C., Robinson, J., Knox, P., Mehta, J., and Wong, D. (2011). Long-term access to support for people with sight loss. British Journal of Visual Impairment, 29(1), 46-59.

Tilley, E. (2013). Management, leadership, and user control in self-advocacy: An English case study. Mental Retardation, 51(6), 470-481.

Webb, P., Davidson, G., Edge, R., Falls, D., Keenan, F., Kelly, B., McLaughlin, A., Montgomery, L., Mulvenna, C., Norris, B., Owens, A. and Shea Irvine, R. (2020). Service users’ experiences and views of support for decision‐making. Health and social care in the community, 28(4), 1282-1291.

Yeung, E. Y. W., Partridge, M., and Irvine, F. (2016). Satisfaction with social care: the experiences of people from Chinese backgrounds with physical disabilities. Health and Social Care in the Community, 24(6), e144-e154.

Young-Southward, G., Cooper, S. A., and Philo, C. (2017). Health and wellbeing during transition to adulthood for young people with intellectual disabilities: A qualitative study. Research in developmental disabilities, 70, 94-103. 

Publications from “independent living” database excluded from the review

Ahluwalia, A.

All Wales People First

Association For Supported Living

Bartlett, R. (2014). Citizenship in action: the lived experiences of citizens with dementia who campaign for social change. Disability and Society, 29(8), 1291-1304.

Baxter, K., and Glendinning, C. (2013). The role of emotions in the process of making choices about welfare services: the experiences of disabled people in England. Social Policy and Society, 12(3), 439-450.

Bigby, C., and Beadle-Brown, J. (2016). Culture in better group homes for people with intellectual disability at severe levels. Intellectual and Developmental Disabilities, 54(5), 316-331.

Bigby, C., Knox, M., Beadle-Brown, J., Clement, T., and Mansell, J. (2012). Uncovering dimensions of culture in underperforming group homes for people with severe intellectual disability. Intellectual and developmental disabilities, 50(6), 452-467.

Birchley, G., Jones, K., Huxtable, R., Dixon, J., Kitzinger, J., and Clare, L. (2016). Dying well with reduced agency: a scoping review and thematic synthesis of the decision-making process in dementia, traumatic brain injury and frailty. BMC medical ethics, 17(1), 1-15.

Boyle, G. (2014). Recognising the agency of people with dementia. Disability and Society, 29(7), 1130-1144.

Brookes, N., Callaghan, L., Netten, A., and Fox, D. (2015). Personalisation and innovation in a cold financial climate. British Journal of Social Work, 45(1), 86-103.

Brotchie, Jenny

Brown Wilson, C., Tetley, J., Healey, J., and Wolton, R. (2011). The best care is like sunshine: accessing older people’s experiences of living in care homes through creative writing. Activities, Adaptation and Aging, 35(1), 1-20.

Brown, B., and Baker, S. (2020). The social capitals of recovery in mental health. Health, 24(4), 384-402.

Butler, Vikki

Cheshire Centre for Inclusive Living

Christensen, K. (2012). Towards sustainable hybrid relationships in cash-for-care systems. Disability and society, 27(3), 399-412.

Clarke, S., Sloper, P., Moran, N., Cusworth, L., Franklin, A., and Beecham, J. (2011). Multi‐agency transition services: greater collaboration needed to meet the priorities of young disabled people with complex needs as they move into adulthood. Journal of Integrated Care, 19(5), 30-40.

Clements Eaton, E. C., and Cox, R. (2015). Women’s experiences of participation in a feminist group for women with complex mental health issues. Issues in Mental Health Nursing, 36(1), 2-10.

Colver, A., Pearse, R., Watson, R. M., Fay, M., Rapley, T., Mann, K. D., … and McConachie, H. (2018). How well do services for young people with long term conditions deliver features proposed to improve transition?. BMC Health Services Research, 18, 1-10.

Colver, A., Rapley, T., Parr, J. R., McConachie, H., Dovey-Pearce, G., Couteur, A. L., … and Vale, L. Facilitating the transition of young people with long-term conditions through health services from childhood to adulthood: the transition research programme. Programme Grants Appl Res. 2019, 7 (4): 1–244. 

Connaughton, H., and Cline, T. (2021). How far can social role valorisation theory help in transition planning for a school‐leaver with significant special needs?. British Journal of Learning Disabilities, 49(1), 80-86.

Croucher, K., Lowson, K., and Fountain, M. (2012). National evaluation of the handyperson programme.

Craigon, P. J., Hobson-West, P., England, G. C., Whelan, C., Lethbridge, E., and Asher, L. (2017). “She’s a dog at the end of the day”: Guide dog owners’ perspectives on the behaviour of their guide dog. PloS one, 12(4), e0176018.

Cumella, S., and Lyons, M. (2018). Shared‐life communities for people with a learning disability: a review of the evidence. British Journal of Learning Disabilities, 46(3), 163-171.

Davies-Abbott, I., Jones, C. H., and Windle, G. (2021). Living in a care home during COVID-19: a case study of one person living with dementia. Quality in Ageing and Older Adults, 22(3/4), 147-158.

de Carvalho Leite, J. C., de L Drachler, M., Killett, A., Kale, S., Nacul, L., McArthur, M., … and Poland, F. (2011). Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis. International Journal for Equity in Health, 10(1), 1-17.

Dehghanizadeh, M., Khalafbeigi, M., Akbarfahimi, M., Yazdani, F., and Zareiyan, A. (2021). Exploring the contributing factors that influence the volition of adolescents with cerebral palsy: A directed content analysis. Scandinavian journal of occupational therapy, 28(7), 553-563.

Dowling, S., Williams, V., Webb, J., Gall, M., and Worrall, D. (2019). Managing relational autonomy in interactions: People with intellectual disabilities. Journal of applied research in intellectual disabilities, 32(5), 1058-1066.

Faulkner, A. (2012). The right to take risks: service users’ views of risk in adult social care. London: Joseph Rowntree Foundation.

Forrester‐Jones, R. (2013). The road barely taken: Funerals, and people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 26(3), 243-256.

Forrester‐Jones, R., Beecham, J. K., Barnoux, M., Oliver, D., Couch, E., and Bates, C. (2017). People with intellectual disabilities at the end of their lives: The case for specialist care?. Journal of Applied Research in Intellectual Disabilities, 30(6), 1138-1150.

Forte, M., Jahoda, A., and Dagnan, D. (2011). An anxious time? Exploring the nature of worries experienced by young people with a mild to moderate intellectual disability as they make the transition to adulthood. British Journal of Clinical Psychology, 50(4), 398-411.

Fraser, M., and Girling, S. J. (2016). An evaluation of the experiences of guide dog owners visiting Scottish veterinary practices. Veterinary Record, 179(10), 253-253.

Fryer, K., Baxter, S., and Brumfitt, S. (2016). The meaning of participation to stroke survivors: a qualitative study. International Journal of Therapy and Rehabilitation, 23(8), 356-362.

Goodman, C., Amador, S., Elmore, N., Machen, I., and Mathie, E. (2013). Preferences and priorities for ongoing and end-of-life care: a qualitative study of older people with dementia resident in care homes. International journal of nursing studies, 50(12), 1639-1647.

Granville, G., Runnicles, D., Barker, S., Lee, M., Wilkins, A., and Bowers, H. (2011). Increasing the Voice, Choice and Control of Older People with High Support Needs.

Griffiths, M. (2019). These Days Are Ours: Exploring Young Disabled People’s Experiences and Views of the Disabled People’s Movement. Liverpool John Moores University (United Kingdom).

Hale, C., Benstead, S., Lyus, J., Odell, E., and Ruddock, A. (2020). Energy Impairment and Disability Inclusion. Centre for Welfare Reform.

Head, A., Ellis‐Caird, H., Rhodes, L., and Parkinson, K. (2018). Transforming identities through Transforming Care: How people with learning disabilities experience moving out of hospital. British Journal of Learning Disabilities, 46(1), 64-70.

Johansson, M., Ahlström, G., and Jönsson, A. C. (2014). Living with companion animals after stroke: Experiences of older people in community and primary care nursing. British Journal of Community Nursing, 19(12), 578-584.

Lamb, N. and Sibbald, S.

Macdonald, S. J., Charnock, A., and Scutt, J. (2018). Marketing ‘madness’: Conceptualising service user/survivor biographies in a period of deinstitutionalisation (1975–2014). Disability and society, 33(6), 849-865.

McConnell, T., Best, P., Sturm, T., Stevenson, M., Donnelly, M., Taylor, B. J., and McCorry, N. (2020). A translational case study of empowerment into practice: a realist evaluation of a member-led dementia empowerment service. Dementia, 19(6), 1974-1996.

McConnell, Tracey, Best, Paul, Sturm, Tristan, Stevenson, Mabel, Donnelly, Michael, Taylor, Brian J and McCorry, Noleen

Merton Centre for Independent Living

Mind

Mitchell, F. (2014). Informed choice for disabled young people in transition: A secondary analysis of qualitative data. Practice, 26(4), 259-270.

Montgomery, T., and Baglioni, S. (2022). ‘Nothing about us without us’: Organizing disabled people’s solidarity within and beyond borders in a polarized age. Social Movement Studies, 21(1-2), 118-134.

Moore, M., Meakin, B., Cameron, C., and Nutt, A. (2017). Improving Understanding of Service User Involvement and Identity.

Morgan, G. (2010). Independent advocacy and the “rise of spirituality”: Views from advocates, service users and chaplains. Mental Health, Religion and Culture, 13(6), 625-636.

Morris, J. (2014). Independent Living Strategy: a review of progress. Control and Disability Rights UK July.

Murison, Sanchi

Nakrem, S., Vinsnes, A. G., Harkless, G. E., Paulsen, B., and Seim, A. (2013). Ambiguities: residents’ experience of ‘nursing home as my home’. International Journal of Older People Nursing, 8(3), 216-225.

National Development Forum for Inclusion, Centre For Policy On Ageing and Office for Disability Issues

Norah Fry Research Centre, Regard, Stonewall and Social Care Institute For Excellence

Oliver, L.

Ottosdottir, G., and Evans, R. (2014). Ethics of care in supporting disabled forced migrants: Interactions with professionals and ethical dilemmas in health and social care in the South-East of England. The British Journal of Social Work, 44(suppl_1), i53-i69.

Parker, Jacqueline, Young, Alys and Rogers, Katherine

People First Scotland

Petri, G., Beadle‐Brown, J., and Bradshaw, J. (2020). Redefining self‐advocacy: A practice theory‐based approach. Journal of Policy and Practice in Intellectual Disabilities, 17(3), 207-218.

Pozzoli, F. (2018). Personalisation as vision and toolkit. A case study. International Review of Sociology, 28(1), 62-85.

Prescott, J., Hanley, T., and Ujhelyi Gomez, K. (2019). Why do young people use online forums for mental health and emotional support? Benefits and challenges. British Journal of Guidance and Counselling, 47(3), 317-327.

Ratti, V., Hassiotis, A., Crabtree, J., Deb, S., Gallagher, P., and Unwin, G. (2016). The effectiveness of person-centred planning for people with intellectual disabilities: A systematic review. Research in developmental disabilities, 57, 63-84.

Richardson, T. D., Jindal‐Snape, D., and Hannah, E. F. (2017). Impact of legislation on post‐school transition practice for young people with additional support needs in Scotland. British Journal of Special Education, 44(3), 239-256.

Shakespeare, Tom, Porter, Tom and Stockl, Andrea

Smith, B., and Caddick, N. (2015). The impact of living in a care home on the health and wellbeing of spinal cord injured people. International journal of environmental research and public health, 12(4), 4185-4202.

Taylor, J. S. (2019). Exploring the experiences and perceptions of people with learning disabilities. Lancaster University (United Kingdom).

Todd, S. and Read, S.

Todd, S., and Read, S. (2010). Thinking about death and what it means: the perspectives of people with intellectual disability. International Journal of Child Health and Human Development, 3(2), 207-14.

Vajta, Engstrom Karin

Welch, V., Collins, M., Hatton, C., Emerson, E., Robertson, J., Wells, E., and Langer, S. (2014). Short break and respite services for disabled children in England: comparing children’s and parents’ perspectives of their impact on children. Children and society, 28(6), 478-494.

Wheeler, P. F. (2017). Where have all the radicals gone? How normative pressures can blunt the radical edge of a social enterprise. Social Enterprise Journal, 13(02), 163-179.

Wiltshire Centre for Independent Living

Publications from “independent living” database unavailable

Davies, Alissa

Leonard Cheshire Disability

McKeown, Andy

Reilly, Catherine

Tu, T., Lambert, C., Shah, J. N., and Westwood, P. (2012). Right to Control Trailblazers Process Evaluation: Wave 1. Office for Disability Issues, London.

“Care” and “support” publications from the entire database included in the review

Abley, C., Manthorpe, J., Bond, J., Keady, J., Samsi, K., Campbell, S., … and Robinson, L. (2013). Patients’ and carers’ views on communication and information provision when undergoing assessments in memory services. Journal of Health Services Research and Policy, 18(3), 167-173.

Addis, K. (2020). Discrepancies between support provided and accessed in the UK for disabled students. Asia Pacific Journal of Developmental Differences, 7(1), 99.

Bell, R. (2012). Does he have sugar in his tea? Communication between people with learning disabilities, their carers and hospital staff. Tizard Learning Disability Review, 17(2), 57-63.

Beverley, C. A., Bath, P. A., and Barber, R. (2011, March). Health and social care information for visually‐impaired people. In Aslib Proceedings (Vol. 63, No. 2/3, pp. 256-274). Emerald Group Publishing Limited.

Clissett, P., Porock, D., Harwood, R. H., and Gladman, J. R. (2013). The challenges of achieving person-centred care in acute hospitals: a qualitative study of people with dementia and their families. International journal of nursing studies, 50(11), 1495-1503.

Gillespie, A., Murphy, J., and Place, M. (2010). Divergences of perspective between people with aphasia and their family caregivers. Aphasiology, 24(12), 1559-1575.

Hassan, N. (2017). ‘Putting music on’: everyday leisure activities, choice‐making and person‐centred planning in a supported living scheme. British Journal of Learning Disabilities, 45(1), 73-80.

Higginbottom, G. M., Rivers, K., and Story, R. (2014). Health and social care needs of Somali refugees with visual impairment (VIP) living in the United Kingdom: A focused ethnography with Somali people with VIP, their caregivers, service providers, and members of the Horn of Africa Blind Society. Journal of Transcultural Nursing, 25(2), 192-201.

Howard, R., Phipps, E., Clarbour, J., and Rayner, K. (2015). “I’d trust them if they understood learning disabilities” support needs of people with learning disabilities in the Criminal Justice System. Journal of Intellectual Disabilities and Offending Behaviour, 6(1), 4-14.

Humphrey, N., and Symes, W. (2010). Responses to bullying and use of social support among pupils with autism spectrum disorders (ASDs) in mainstream schools: A qualitative study. Journal of research in special educational needs, 10(2), 82-90.

Innes, A., Page, S. J., and Cutler, C. (2016). Barriers to leisure participation for people with dementia and their carers: An exploratory analysis of carer and people with dementia’s experiences. Dementia, 15(6), 1643-1665.

Jamieson, R., Theodore, K., and Raczka, R. (2016). Becoming a mother: Supported decision-making in context. Journal of Intellectual Disabilities, 20(4), 313-328.

Jones, M., Pietilä, I., Joronen, K., Simpson, W., Gray, S., and Kaunonen, M. (2016). Parents with mental illness–a qualitative study of identities and experiences with support services. Journal of Psychiatric and Mental Health Nursing, 23(8), 471-478.

Jones, N., Greenberg, N., Phillips, A., Simms, A., and Wessely, S. (2019). Mental health, help-seeking behaviour and social support in the UK armed forces by gender. Psychiatry, 82(3), 256-271.

Kulnik, S. T., Hollinshead, L., and Jones, F. (2019). “I’m still me–I’m still here!” Understanding the person’s sense of self in the provision of self-management support for people with progressive neurological long-term conditions. Disability and Rehabilitation, 41(11), 1296-1306.

Lees, C., Poole, H., Brennan, M., and Irvine, F. (2017). Adults with learning disabilities experiences of using community dental services: service user and carer perspectives. British Journal of Learning Disabilities, 45(2), 114-120.

McGuire, N., Melville, C., Karadzhov, D., and Gumley, A. (2020). “She is more about my illness than me”: a qualitative study exploring social support in individuals with experiences of psychosis. Psychosis, 12(2), 128-138.

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 and Social Care in the Community, 27(4), e514-e521.

McKeown, M., Roy, A., and Spandler, H. (2015). ‘You’ll never walk alone’: Supportive social relations in a football and mental health project. International journal of mental health nursing, 24(4), 360-369.

McLaughlin, D., Barr, O., McIlfatrick, S., and McConkey, R. (2014). Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities. BMJ Supportive and Palliative Care.

Nolan, P., Bradley, E., and Brimblecombe, N. (2011). Disengaging from acute inpatient psychiatric care: a description of service users’ experiences and views. Journal of psychiatric and mental health nursing, 18(4), 359-367.

Read, S. A., Morton, T. A., and Ryan, M. K. (2015). Negotiating identity: A qualitative analysis of stigma and support seeking for individuals with cerebral palsy. Disability and Rehabilitation, 37(13), 1162-1169.

Regan, J. L. (2016). Ethnic minority, young onset, rare dementia type, depression: a case study of a Muslim male accessing UK dementia health and social care services. Dementia, 15(4), 702-720.

Rogowsky, R., Laidlaw, A., and Ozakinci, G. (2020). ‘Having come to university my care was very much in my hands’: exploration of university students’ perceptions of health care needs and services using the common-sense model of self-regulation. Journal of Behavioral Medicine, 43, 943-955.

Simpson, S., Smith, S., Furlong, M., Ireland, J., and Giebel, C. (2020). Supporting access to activities to enhance well‐being and reduce social isolation in people living with motor neurone disease. Health and Social Care in the Community, 28(6), 2282-2289.

Smith, N., Towers, A. M., Palmer, S., Beecham, J., and Welch, E. (2018). Being occupied: supporting ‘meaningful activity’in care homes for older people in England. Ageing and Society, 38(11), 2218-2240.

Sutton, P., Cozens, M., and Chiedza, K. (2020). Supporting people with learning disabilities and mental health issues: service users’ experiences. Learning Disability Practice, 23(4).

Tucker, S., Hargreaves, C., Cattermull, M., Roberts, A., Walker, T., Shaw, J., and Challis, D. (2021). The nature and extent of prisoners’ social care needs: Do older prisoners require a different service response?. Journal of Social Work, 21(3), 310-328.

“Care” and “support” publications from the entire database excluded from the review

Anderson, S., Keating, N., and Wilson, D. (2017). Reconciling marriage and care after stroke. Canadian Journal on Aging/La Revue canadienne du vieillissement, 36(3), 386-401.

Balderston, S., Morgan, H., Day, A., and Fish, R. (2019). Tackling violence against disabled women and girls: a toolkit for social care, housing, mental health and safeguarding services 2019. Disability Rights UK, London.

Bates, C., Terry, L., and Popple, K. (2017). Supporting people with learning disabilities to make and maintain intimate relationships. Tizard Learning Disability Review, 22(1), 16-23.

Bricknell, Jessica, Frounks, Amy, Murran, Ruth and Skerry, Giles

Camm-Crosbie, L., Bradley, L., Shaw, R., Baron-Cohen, S., and Cassidy, S. (2019). ‘People like me don’t get support’: Autistic adults’ experiences of support and treatment for mental health difficulties, self-injury and suicidality. Autism, 23(6), 1431-1441.

Chadwick, D., Chapman, M., and Davies, G. (2018). Factors affecting access to daily oral and dental care among adults with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 31(3), 379-394.

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.

Lewis, R., Dobbs, L., and Biddle, P. (2013). ‘If this wasn’t here I probably wouldn’t be’: disabled workers’ views of employment support. Disability and Society, 28(8), 1089-1103.

Munro, E.R., Zonouzi, M., Fountain, R., Harris, J., Vale, D. and a group of disabled parents

Skipp, A., and Hopwood, V. (2016). Mapping user experiences of the Education, Health and Care process: a qualitative study. London: Department for Education.

Tuffrey-Wijne, I., Giatras, N., Butler, G., and Cresswell, A. (2012). People with intellectual disabilities who are affected by a relative or friend with cancer: A qualitative study exploring experiences and support needs. European Journal of Oncology Nursing, 16(5), 512-519.

Vallin, E., Nestander, H., and Wells, M. B. (2019). A literature review and meta-ethnography of fathers’ psychological health and received social support during unpredictable complicated childbirths. Midwifery, 68, 48-55.

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62. Hodge and others, 2015. ↩

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83. Hovish, K., Weaver, T., Islam, Z., Paul, M., and Singh, S. P. (2012). Transition experiences of mental health service users, parents, and professionals in the United Kingdom: a qualitative study. Psychiatric rehabilitation journal, 35(3), 251. ↩

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85. Medforth, N., and Huntingdon, E. (2018). Still Lost in Transition?. Comprehensive Child and Adolescent Nursing, 41(2), 128-142. ↩

86. Pearson, C., Watson, N., Gangneux, J., and Norberg, I. (2021). Transition to where and to what? Exploring the experiences of transitions to adulthood for young disabled people. Journal of Youth Studies, 24(10), 1291-1307. ↩

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