Housing allocation for people with learning disabilities in England (‘The HOME Project’): The absence of knowledge equity and the impact of epistemic injustice

Housing for people with learning disabilities

Research on the housing needs of people with learning disabilities remains limited (Šiška et al. 2018). Some studies have examined quality of life in supported living, policy contexts, and outcomes (Bigby & Beadle-Brown, 2018; Aspinal et al. 2020; Bigby et al. 2020). The link between housing and wellbeing is complex (Clapham et al. 2018), though broader literature associates housing with health and wellbeing (Holding et al. 2020; Kearns, 2022; Howden-Chapman et al. 2023). Housing inequality impacts society at large, with tenure-based disparities linked to mental health outcomes (James et al. 2024; Arundel et al. 2024).

Learning disabilities, also known as intellectual disabilities, are lifelong and involve reduced cognitive ability and difficulties with daily activities (Mencap, 2024). People may need more time to learn, additional support to develop skills, understand complex information, and engage socially (Mencap, 2024). Terminology related to this population is often unclear and inconsistent in the UK. We chose to use the term ‘learning disabilities’ consistently throughout this study as it reflects the preference of people with lived experience who acted as co-producers (Power et al. 2022), a preference echoed in other housing and homelessness research (McKenzie et al. 2023).

People with learning disabilities are overrepresented in social housing and face significant health and social inequalities, strengthening the case for specialist housing support (McGlaughlin & Gorfin, 2004). They have higher rates of chronic physical illness, require annual health checks (Wigham et al. 2022), and were identified as vulnerable during COVID-19 (Williamson et al. 2021). They are also more likely to experience hate crime (Wiseman & Watson, 2022), serious mental illness (White et al. 2005; Bourne et al. 2022; Wigham et al. 2024), and higher rates of mental ill health [25% vs 17.2% in the general population] (Cooper et al. 2009), with lower life expectancy (Glover et al. 2017).

Housing disparities are stark, with 57% of people with learning disabilities living in sheltered accommodation, compared to 2% of the general population (McMahon et al. 2019). An estimated 35,000–38,000 adults with learning disabilities and autistic people in England live in supported housing (Beech et al. 2023). The proportion living with family or friends remains static at 37%, a situation described as a housing “timebomb” as carers age (Beech et al. 2023). This group faces higher risks of hospital detention under the Mental Health Act, tenancy loss, homelessness, and poor quality of life (Mercier & Picard, 2011; McKenzie et al. 2019; Foster, 2024), making housing a social determinant of health linked to multiple negative outcomes (Harris et al. 2023).

Epistemic injustice and knowledge equity

Epistemic injustice occurs when a person’s perspective, experience, or legitimate knowledge is dismissed due to prejudice—such as inaccurate assumptions about their mental capacity (Grim et al. 2022), or when knowledge is made inaccessible through excessive or poorly adapted information (Cohen & Garasic, 2024). It reveals hidden social harms, including the unequal treatment of professional groups based on their knowledge (Fletcher & Clarke, 2020). Defined as “treating someone unfairly in their capacity as a knower” (Fricker, 2007), epistemic injustice also refers to differential treatment based on assumptions about a person’s knowledge. It is especially significant in health and care contexts (Carel & Kidd, 2017; Chung, 2021; Maglajlic & Ioakimidis, 2022), and it is argued that it also applies to broader systems, such as housing. The canonical forms we consider are testimonial, hermeneutical, institutional, contributory, and participant-based injustice (see Appendix 1).

In contrast, knowledge equity is here defined as ensuring that a persons knowledge is not excluded from a process (Jaffe, 2017). The term describes situations where relevant knowledge and experience are appropriately recognised in decision-making, particularly when some individuals are marginalised or have different communication needs.

Housing allocation for people with learning disabilities remains understudied despite persistent disparities. It was identified as a regional priority during consultation meetings (SH) with Local Authority representatives and North East and North Cumbria (NE&NC) Clinical Commissioning Groups (CCG), now part of the NE&NC Integrated Care Board (ICB) via the Health and Care Act 2022. In this region, both the North East and North West of England face multiple indicators of deprivation (World Health Organization, 2014), including barriers to housing, limited transport access, low income, and reduced educational attainment (Joseph Rowntree Foundation, 2023). This study aimed to explore how knowledge equity among multiple stakeholders can be improved in housing allocation and provision for people with learning disabilities within this regional context.

Patient and public involvement

When and how were the patients/public first involved in the research?

People with lived experience from Research Abilities, a research advisory group including people with learning disabilities, (The Lawnmowers Independent Theatre Company, 2020, 2023b) were co-applicants on the study and contributed equally to governance, oversight, and steering group activity, including providing pictorial communication cards and ‘jargon buzzers’ to increase accessibility. Accessible language was used throughout, including phrases like “housing not at its best.” The steering group also included: a parent of a person with learning disabilities, regional health service and local authority commissioners, a local authority director, a consultant learning disability psychiatrist, a professor of psychology and learning disabilities, a social worker from a learning disability team, health and social care/learning disability researchers, and a housing policy expert. Members introduced themselves by lived or professional experience rather than title (Stuart & Shay, 2019).

How were the research question(s) developed and informed by their priorities, experience, and preferences?

Research Abilities developed focus group questions and data collection methods, advised on the accessibility of research tools and materials, supported recruitment, identified suitable community venues, conducted data collection, participated in a workshop to interpret findings, advised on all resulting recommendations, and devised and performed at a dissemination event (The Lawnmowers, 2023a).

How were patients/public involved in: the design and conduct of the study and recruitment to the study?

Research Abilities ensured materials were in easy-read formats and allowed for extra time or meeting adjustments where needed. They contributed to recruitment to the study as members of the research team by sharing information about study participation within and across their networks. This resulted in the recruitment from representative community organisations.

How were patients/public be involved in choosing the methods and agreeing plans for dissemination of the study results to participants and linked communities?

People with lived experience were co-applicants and members of the steering committee, involved in all decisions about dissemination. A film about the co-production process (The Lawnmowers, 2022) was shown in focus groups to support understanding. A “housing mega-mix” was also produced with music and accessible lyrics. One member noted they “enjoyed de-jargoning and having a product at the end we could be proud of.” Research Abilities presented the study at dissemination events (The Lawnmowers, 2023a) and produced an accessible video sharing the findings of the study.

Ethical approval

Ethical approval was given by Newcastle University Ethical Review Committee (Ref: 2357/24305/2022). The study involved adults (age > 18) with mild/moderate learning disabilities who wished to share their experiences of housing or housing allocation, as well as adults with an interest in the housing and care needs of this group. To widen representation, consenting relatives of people with complex needs and/or severe communication difficulties were included.

Recruitment and consent

Stakeholders were recruited through regional independent learning disability organisations, social care and housing bodies, and via the North East Learning Disability Network and Learning Disability North East (LDNE). Relatives were recruited through the regional Challenging Behaviour Foundation (CBF) support group, and local networks. Housing providers, commissioners, and professionals in housing pathway roles were recruited via regional professional and practitioner networks. An easy read Participant Information Leaflet (PIL) (see supplementary material) was co-developed with Research Abilities (a group led by and for people with learning disabilities), was used alongside a structured capacity-to-consent assessment to obtain informed written or documented/audio recorded verbal consent from all participants (Wigham et al. 2011). Provision for participants to provide audio recorded verbal consent was included to widen accessibility for people with learning disabilities. In addition, people with complex needs and/or severe communication difficulties were included through adaptations, such as using a consenting relative to respond on their behalf (Cummins, 2002).

Data collection

Consultation and Co-production

Facilitated consultation with stakeholder groups took place where the study aims were explained. This process supported the identification of inequality of status between individuals and their knowledge, or where systems might filter and exclude different types of information (Fletcher & Clarke, 2020; Fletcher, 2024).

Research aiming to benefit marginalised groups should actively involve them to “restore the place of ordinary people as the creators of knowledge” (Park, 1992, 30). Co-produced research offers personal benefits, including increased self-worth (Bourne, 2019). Co-production can be defined as individuals or groups influencing the support and services they receive or how those services are designed, commissioned, and delivered (Department of Health, 2014), co-production was central to the HOME project. The steering group conducted the research according to values of knowledge democracy and avoidance of epistemological exclusion (Stuart & Shay, 2019). As such, our co-production process is reported as a key study finding.

Audit

An audit of open-source online material was conducted to assess publicly available housing information published by North East and North Cumbria (NE&NC) local authority websites relating to people with learning disabilities. The 14 local authorities included: Cumberland, Darlington Borough, Durham County, Gateshead, Hartlepool, Middlesbrough, Newcastle, North Tyneside, Northumberland, Redcar & Cleveland, South Tyneside, Stockton Borough Council, Sunderland, and Westmorland & Furness. Google searches were conducted between September and November 2023, with Cumbria websites revisited in August 2024. Search terms explored keywords and phrases related to housing policy, strategy, and information provided by each authority. Retrieved data was categorised by dominant type (e.g. Accessible Information, Market Housing Needs Assessment, Funding Information) and tabulated for each authority.

Focus groups and interviews

Focus groups allow for interaction between members of a group to be observed, and for members of groups to develop ideas collectively (Morgan, 1996; Wilkinson, 1998; Smithson, 2008). Purposive sampling was used to recruit participants (Kelly et al. 2010). Focus groups included mixed stakeholders (people with learning disabilities and their relatives, community service providers, commissioners, advocates, local authority representatives, residential providers, and housing pathway ‘system’ managers). Focus group questions were co-developed by the Research Abilities members of the study steering group and were conducted online and in person (see supplementary material). A video and a music mix were developed by Research Abilities to introduce housing concepts to focus group participants. Accessible visual/pictorial communication cards and ‘message boards’ were included for participants to record their views and thoughts during the discussions.

In accordance with Public and Patient Involvement (PPI) guidelines (Cowan, 2020), a £20.00 GBP voucher was offered to participants who attended in-person to cover their time and travel. The perspectives of participants who were unable to attend a focus group were gathered through one-to-one interviews.

Qualitative data analysis

Focus group audio recordings were transcribed and analysed using thematic analysis (Braun & Clarke, 2012). This iterative process involved the following steps, (1) familiarisation with the data, (2) identification of codes from the data and developing a coding framework, (3) grouping codes into themes and subthemes and, (4) refining and revising themes (Hsieh & Shannon, 2005). The data was analysed by more than one person (AF, CH, SH) to ensure no single perspective was unduly focused upon (Richards & Hemphill, 2018). A workshop facilitated by the research team to interpret study findings was attended by people with learning disabilities, a representative from NHS England, a metropolitan borough council (MBC) housing manager, and a director from the regional Integrated Care Board (ICB). Significant themes were used as the basis for developing recommendations around how to ensure all stakeholders’ knowledge is treated fairly (Stuart & Shay, 2019).

Knowledge equity and epistemic injustice interpretation

‘Knowledge Equity Indicators’ were developed (AF/CD) as a framework to support interpretation. Indicators comprised of (1) potential causes of knowledge inequality faced by people with a learning disability when trying to navigate housing services and systems, (2) illustrative vignettes describing what this can look like, and (3) possible solutions and strategies to mitigate the problems and barriers identified. Generalising participants’ lived experiences preserved the anonymity of the person to whom the experience belonged and allowed workshop group discussions of recognisable scenarios (Wilkinson, 1998).

Audit of opensource/online housing information

Online searches of 14 regional local authority websites (Sept–Nov 2023; updated Aug 2024 for Cumbria) assessed the availability of accessible housing information. Authorities are anonymised. Information types were categorised for comparison ( Table 1).

Findings showed that 11 authorities (79%) had no ‘easy read’ housing information for people with a learning disability— i.e. content using simple language with visual/audio support (Inclusion London, 2018; NHSE, 2018). Eight (57%) did not report local population statistics; nine (64%) lacked a published housing strategy or relevant section detailing plans for supported housing for people with learning disabilities (e.g. Local Government Association, 2024). Seven (50%) had no stated housing aims or future actions, including targets, timelines, or priority lists.

Eight (57%) provided no information on housing funding—neither the amount nor source for specialist supported housing. Ten (71%) had not published a market housing needs assessment within the past five years, which would evaluate current/future housing demand considering population growth, demographics, economics, and affordability. Eleven (79%) did not report stakeholder views based on survey data about housing support experiences. Eleven (79%) had no published data on housing provision—i.e. available units or types of housing for people with learning disabilities, etc. Twelve (86%) did not provide a demand or shortfall estimate with a gap analysis comparing current supply to projected need. In three cases (21%), no relevant housing information was found in any category.

Where housing information was available, it often lacked signposting or guidance. Some authorities had independent organisations offering housing support, but these were not referenced on official sites. One authority shared a case study; another reported survey results. Some housing data (e.g. emergency admissions, out-of-area placements) was not publicly available.

Focus groups and interviews

Thirty-nine participants took part: 15 people with learning disabilities, five relatives, and 19 service providers (commissioners, practitioners, residential providers, housing pathway ‘systems’ managers). Three focus groups (one online, two in-person) and 12 interviews were conducted. Analysis generated four themes and seven sub-themes.

Theme 1: Access

Housing knowledge is rendered inaccessible to people with learning disabilities, through information being too difficult to digest or simply withheld.

Subtheme 1a: Knowledge is inaccessible

Knowledge required by people with learning disabilities to make decisions was inaccessible to them, even if it was comprehensible to others. Provision of accessible information, in a range of formats, was seen as a minimum requirement.

Participants could not make sense of their options because the language or concepts required to fully understand their situation were unavailable. Being able to provide tangible and meaningful ways for people with learning disabilities to process information was viewed as challenging.

Participants also highlighted some areas of good practice, such as providing take-home graphical, written, or audio information, or using tangible methods like property visits.

Subtheme 1b. Knowledge is withheld or not shared

Housing was chosen for people with learning disabilities without them being aware of their accommodation options. In addition, relevant information was sometimes withheld because of assumptions about a person’s capacity for understanding.

In some cases, housing providers withheld information to pressure quick decisions, while others routinely chose accommodation for people without informing them of their options, leading to individuals not being aware of the choices they have.

Theme 2: Choice

Participants described restricted choice in housing for people with learning disabilities, often due to limited stock, eligibility criteria, and assumptions about decision-making capacity.

Subtheme 2a. Restricted choice

Well-intentioned use of knowledge can lead to restricting people’s choice. Many restrictions stemmed from efforts to provide support, for example, to reduce some of the complexity of navigating the housing system by making decisions on behalf of people with learning disabilities.

In contrast to housing choices being made on behalf of people, irrespective of the underlying motivation, the need to allow people to make their own choices was seen as empowering and beneficial.

Subtheme 2b. Limited groups of people control choice

When housing decisions are shaped by a limited group - often without learning disabilities or with fixed perceptions of what constitutes ‘good’ housing - available choices and pathways become restricted.

Allocation of housing can be taken away from people with learning disabilities, and the system is vulnerable to exploitation—leading to higher costs for tenants and fewer housing options.

Theme 3: Change

Organisations lacked the capacity to plan ahead, leading to unmet housing needs across individuals with a range of support needs. Participants described a system that responded reactively to change with an ‘emergency response’ approach, rather than anticipating and accommodating evolving support requirements.

Subtheme 3a. Knowledge is not responded to

People with learning disabilities and their relatives’ or carers’ knowledge is not always responded to. Some participants felt their explanations for their needs were not taken seriously. A participant with learning disabilities lost access to housing options after their public transport travel training was cancelled. Some managers and decision makers within the system were felt to have overlooked peoples personal choices and preferences based upon their own knowledge.

One recurrent scenario concerned people with mild learning disabilities who could self-advocate but needed extra time, who often didn’t meet thresholds for support. Their needs did not fit predefined categories and were dismissed as not severe enough. If they communicated well, their articulacy could lead to their needs being overlooked entirely.

Subtheme 3b. Knowledge is not used to plan for change

Organisations and systems often lack the flexibility to respond to changing, complex needs. Events like the death of a parent, spouse, or carer frequently disrupted housing situations, forcing people to move or fight to keep their homes, while also affecting benefits or causing probate issues. One member of a mixed focus group commented, in the wake of Covid-19:

The ability to conceptualise potential future scenarios and develop contingency is a distinct way of thinking, often not built into public services and decision-making systems.

Anticipating changing needs, such as in response to people with learning disabilities or their family members aging, can be opportunities to offer personalised choice and planning in advance so that the person has choice about their home and support.

Theme 4: Harm

Although providers often aimed to help, harm or fear of harm arose due to limited information and restrictive practices. Participants described people with learning disabilities as vulnerable, facing risks such as unsafe housing, hate crime, and institutional or isolating living environments.

Subtheme 4a. People fear harm

There were some instances where people were unaware of their options and entitlement to seek an alternative to housing allocation in areas where they might feel unsafe.

Participants shared their concerns about being placed in poor and then not being able to request or argue for improvement. One carer referred to a UK news story where a coroner ruled that Awab Ishak, a two-year-old, died of respiratory difficulties caused by mould in the accommodation his family was placed in (McCann & Horsburgh, 2022).

Fear of harm draws from real world examples and awareness of power imbalance, vulnerabilities and feelings of powerlessness in relation to societal perceptions of disabilities.

Subtheme 4b. People feel institutionalised

One focus group participant said that they experienced supported housing in the community they lived in, separate from ‘normal’ housing, as feeling institutional rather than homely.

Service providers acknowledged that housing with support, such as ‘core and cluster’ (housing people with learning disabilities in close proximity so they could share services) could result in social isolation.

Study implications

The lack of knowledge equity and experiences of injustice show that housing-related social harms extend beyond the physical condition of housing to include inadequate support. These findings contribute to a social harm lens in housing policy analysis (Gurney, 2023) and suggest that adopting a knowledge equity approach could help mitigate such harms (see Table 2).

Systemwide improvements in housing allocation could include, establishing standards for accessible housing information co-designed with people with learning disabilities; embedding principles of meaningful involvement (knowledge equity) at every stage of housing allocation; and designing social housing systems to prioritise forward planning and proactive, rather than reactive, responses.