“A decent home is the foundation for an independent life.”
The recent National Disability Strategy (opens new window) restates the profound importance of home as a place which ought to support and foster independence and well-being. Where people with learning disabilities live and the support that they might need or get has been a big issue for many years. Good quality, accessible housing is essential for the delivery of appropriate social and health care to people with learning disabilities. There is evidence that poor housing and living environments are bad for people’s well-being and health and that some people with learning disabilities are living in poor and/or insecure housing or becoming homeless. There is a concern that some people with mild to moderate learning disabilities may be missing out on getting the help with housing and social care that they need: they may not qualify for help under the Care Act 2014, or may not apply for this help, and may therefore have ‘unmet’ care and support needs.
Our research is trying to understand the ways that people with learning disabilities who are on the ‘edges’ of social care can be better supported to access and enjoy living in their own tenancies in the community. The project, funded by the National Institute for Health Research, School for Social Care Research (opens new window), is a collaboration between researchers at the universities of York (opens new window) & Bristol (opens new window); housing provider Riverside (opens new window); Learning Disability England (opens new window); doodler and community printmaker, Stephen Lee Hodgkins (opens new window); and, the Housing LIN. The project team also includes an advisory group of people with learning disabilities who rent their own homes and who also belong to self-advocacy groups including York People First (opens new window) and My Life, My Choice (opens new window).
In the first part of the research, we organised one national and eight regional roundtable events held on zoom in early 2021 attended by over 100 professionals and experts by experience including: people with learning disabilities, family carers, advocates, social care staff, social and private housing providers, representatives from local authorities, the NHS and voluntary and community organisations and key national policy experts. We wanted to know – what’s going on? Some of the key messages were:
- There is a shortage of housing in general which impacts on people with learning disabilities who wish to rent and who often don’t have sufficient resources - or are not regarded as a priority for support - to help them secure this limited housing.
- Social housing is often viewed as the first or preferred option for people with mild or moderate learning disabilities – as opposed to the private rented sector - but neither sector is thought of as easy to access.
- There were some positive examples of renting from private landlords as well as some big concerns over the quality and insecure nature of renting in the private sector.
- Social care support was often hard to obtain for people with mild or moderate learning disabilities who rented their own homes. There needs to be more ‘low-level’ support services available that prevents small problems becoming big ones.
- Practical and emotional support for renting a home was often provided by families who filled gaps in support. Families in turn described a lack of adequate information and/or support for themselves.
- Overall, there is a need for a greater policy priority on housing for people with learning disabilities, including better joint working not only between housing and social care but also with NHS acute and community services.
Many of these key messages will be familiar to those who have been working on the issues associated with housing and learning disability for several decades. A few things stood out amongst all the views we heard.
First is the relative dislocation between housing and social care. Both in terms of services being quite distant relations organisationally but also in the sometimes separation of concern i.e. the relative rarity of drawing together different ways to support people who rent with the range of things that make home ‘work’ and which might span housing, social care and even health. Encouragingly, the government's adult social care reform white paper (opens new window) outlines a range of targeted measures to encourage local authorities and their partners to set out an improved strategic vision for housing related care and support for older adults and disabled adults of working age.
Second, is there an element of paternalism in the suggestion from some that we should divert people with learning disabilities away from the private rented sector because of its risks and imperfections? For many people, renting a place – with others or alone – is an important option. The fall-out may be greater for people with learning disabilities if things go wrong but this only magnifies the need for flexible and what might often be quite low levels of support. Arguably, we need to build on other conversations within housing regarding the role of the private rented sector to make it fit for purpose for everyone to access.
Thirdly on the issue of support, there was a lot of reminiscing about the policy and practice of 'Supporting People’ (opens new window) which funded flexible and often quite light touch support for people living in the community. And a sad resignation that in austerity-times (opens new window), low level support was an early casualty. This is clearly a false economy – financially when things go wrong and more expensive solutions are needed – and, on a human level when people feel isolated, unsupported and unsafe or unhappy with where they live.
Finally, a home for most people is not just four walls but the neighbourhood and the community in which people live. Our advisory group, made up of people with learning disabilities who rent their own homes, reminded us of the importance of friendships, pets, gardens, neighbours, feeling safe, feeling connected – and how some of these things were inextricably linked with home being a good place. Sometimes support is needed with all of these things as well and we heard about the valuable work of peer support and self-advocacy (opens new window) organisations.
The next stage of the research involves interviews with people with learning disabilities who are living in social housing and the private rented sector and they will be invited to record their experiences of housing and home in creative ways, for example, through craft work or photography. We hope to learn more about the ups and downs of renting and also the role social care does or doesn’t play in helping people with learning disabilities rent their own homes.
View the resource 'Supporting people with learning disabilities to rent their own place' for more information including an easy read version of the key messages in this blog, a doodle summary of the key messages in this blog, and a summary of the messages from stage 1 of our project.
If you would like to know more about our research, you can contact Eppie Leishman who is one of the researchers on the project on firstname.lastname@example.org
This blog reports on independent research by the National Institute for Health Research School for Social Care Research. The views expressed in this publication are those of the authors and not necessarily those of the NIHR SSCR, the National Institute for Health Research, nor the Department of Health and Social Care.
Lastly, if you found this blog of interest, you can also read a range of other resources on housing for people with a learning disability on the Housing LIN’s dedicated webpages.