“I’ve never, ever had a home of my own and this is my first home… my dream come true.”
This is what one person involved in our housing research told us. As the government’s National Disability Strategy notes: “A decent home is the foundation for an independent life.”
But, sometimes, the idea of home is not extended to people with learning disabilities. Instead, there’s a service-land jargon of placement, unit or setting.
Through our study, Supporting People with Learning Disabilities at the Edges of Social Care in Social Housing and the Private Rented Sector, we wanted to understand people’s experiences of renting. We wanted to know what support – if any – is useful and what could improve the experiences of tenants with learning disabilities.
Our findings suggest that, too often, there are limited housing choices open to them.
NHS data shows that 35,500-37,500 people with learning disabilities and autistic people live in supported housing, and 3,600 rent from private landlords. However, this data is not complete as it covers only England and only those aged 18-64 receiving long-term social care. There will be others, such as the tenants in our study who receive little or no formal social care.
Our research began in late 2020 and ended earlier this year. We continue to raise awareness about the issues, for example, by speaking at events. We have also produced easy-read research findings.
Talking to tenants
For our research, we held eight regional and one national roundtable event with over 100 attendees in total. We interviewed 35 tenants – 30 in social housing and five in the private sector – including those who were already renting but wanted to move.
Our project team included an advisory group of people with learning disabilities who rented their own homes and who belonged to self-advocacy groups, including York People First and My Life, My Choice.
Our work, funded by the National Institute for Health Research’s School of Social Care Research, involved the University of York, the University of Bristol, housing provider Riverside, Learning Disability England and Housing LIN (a network for professionals in specialist housing and care in England and Wales).
Where to? Who with?
People we spoke to told us that those paid to support them were not helpful in planning a move and, in some cases, were actively against this. We also heard that some support staff discouraged couples from moving in together.
What about choice and control?
People’s views are not always prioritised. Support staff, social workers and family sometimes have more of a say in where people live than people with learning disabilities themselves.
Private renting is often seen as a less stable option than social housing. But our research shows people with learning disabilities can be excellent tenants who stay in their homes for a long time. Many of those we spoke to were long-term settled renters who had been in their tenancies for over 10 years.
Those living in social housing could often see a long-term future and stability in their homes but, for those rented privately (a much smaller portion of those who took part), the future felt less settled.
While there were some great examples of renting privately, there were also huge inconsistencies and people were not always aware of their rights as tenants.
We also found that, while social workers might be involved in providing support in early stages of renting, this often dropped off and little support was given to maintain a long-term tenancy. This may make it harder for people renting privately who do not get formal paid social care support on a regular basis to stay in their homes.
Private landlords are also not always aware of the needs of people with learning disabilities, such as requiring easy-read tenancies – but this can also be said of social housing landlords.
A home as you want it: an hour a week of flexible support can be enough to allow someone to maintain a tenancy. Photo: Seán Kelly
Making it work
For some of the people we spoke to, an hour a week of flexible support meant they were able to maintain their tenancy.
This support often included things such as:
- Reading and explaining inaccessible letters, such as those on changes in contracts or bills
- Support to set up direct debits, pay bills and manage money
- Helping with getting repairs done but not taking over – we found tenants were often not taken seriously when reporting repair needs and support staff often had to escalate this with landlords
- Having a named contact/housing officer who is regularly in touch throughout a tenancy, not just at the beginning.
If we are to offer more homes that are privately rented, landlords need to be made aware that people with learning disabilities can make excellent long-term tenants.
Landlords also need to be aware of the needs of people with learning disabilities, for example in terms of easy read documents and correspondence regarding and repairs and maintenance.
There needs to be support in place for those renting for the first time, particularly in the private sector where landlords may not be in a position to offer this.
Local authorities may lease properties from private landlords then act as the landlord for the tenancy. This model may work well in ensuring tenants with learning disabilities have adequate support.
We also need more support for local self-advocacy groups.
People with learning disabilities also need to be included in the conversation and made aware of their options when it comes to renting. Seeing other people with learning disabilities successfully renting demonstrates another pathway regarding choice of home.
Finally, social workers need to consider renting privately as a viable option for people with learning disabilities, and this needs to be presented as a genuine choice when planning for the future.
As for the relationships between housing, health and social care agencies, we think it is quite difficult to understand how they are working together well or if at all. The people we spoke to were not always clear on how (or indeed whether) different agencies were connected or worked collaboratively. They might
talk to each other or sometimes with families but often did not include people with learning disabilities themselves.
It is not just formal social care that makes the difference. Neighbours can really help in having a decent life and being close to family and friends also made a big difference.
Who doesn’t want to have a place that they call home, or feel at home in? As one research participant told us: “It’s my own place, you know. I can do what I want in it, and I can have friends over, and family and all that.”
Becca Cooper is chair at York People First; Eppie Leishman is research associate at the University of York
