“We have felt lonely, unhappy, anxious, stuck in homes that just don’t feel like our own.” This is how a person with a learning disability describes their experience of housing for a research project we were involved in.
Imagine living with people you don’t choose to live with or being moved away from your family, friends and community.
For many of the 1.2 million adults with learning disabilities in the UK, this is their reality. Often, they are placed in houses that are too big or too small or in places where the support isn’t right for them. Stuck in homes that do not feel like their own.
Around one in four adults with learning disabilities in the UK live in some form of supported housing. Demand is growing yet some systems designed to support them to live independently are failing them.
Professionals describe the newest housing models in some areas as having a “stack them high, sell them cheap” approach. This refers to an increase in high-rise buildings that are cleverly advertised as purpose-built homes where each person has their own front door. In practice, some are segregated from the community, which can give them an institutional feel.
These issues and more led Thera Trust to collaborate with research organisation IMPACT (Improving Adult Care Together) on a housing project that finished last year. It was intended to support Thera to engage better with local authorities and commissioners about the importance of person-led housing.
Over six months, the experiences of 54 individuals were collected – 34 people with learning disabilities, four family carers and 16 staff.
Discussions with about 10 people took place at Thera coffee mornings, and one-hour individual meetings were held at interviewees’ homes.
Those who took part lived in a variety of settings including in their own homes with support, supported accommodation, group housing and hospitals.
One story was Lucy’s (not her real name). Lucy, 49, had been living independently but was experiencing an increasing number of falls.
Despite an agreement between Lucy and her support team that a higher level of support was needed, neither her home nor the support were further adapted. Instead, she was placed in hospital for an extended period and, eventually, a nursing home where many of the other residents were elderly and had dementia (remember, Lucy was not yet 50). It took over a year for Lucy to get back into a supported living environment.
Her experience and those of others highlight how urgent action must be taken by local authorities and commissioners.
Five key findings arose from the project.
Funding is based on coping not thriving
People explained that being able to simply cope was deemed acceptable, rather than their being supported to thrive in their own homes.
Professionals described similar experiences, including support being reduced or not meeting needs.
This has led to people who live somewhat independently missing out on support – such as that to manage money – that could improve their quality of life further.
It’s hard to move
Many people shared they felt stuck once they had been placed. It can sometimes take years to move out of an unsuitable home.
People may need to move not solely because of incorrect support; reasons include a lack of adaptations in the home or not getting along with those they live with.
Poor support increases risk
One person told us that support was “either too much or too little or not the kind of help we truly need. This can make it hard to live a full life, to feel independent or to simply feel safe and happy.”
Funding rarely covers the cost of high-quality, person-centred support, which increases the risk of hospital admissions and safeguarding concerns. Even when personalised support is available, it is often not flexible or means a person loses support in another area.
Personal preference
How people live, decorate and enjoy their home is incredibly personal but is often decided by others. In addition, choice of home is often taken away, with many feeling as if their moves were imposed rather than chosen.
As one said: “Being shown just one house is not a choice.”
Importance of community
People valued living in places where they could build friendships and stay close to their family. When this was lost, through forced moves or a lack of options, it brought significant distress and isolation.
Film gets the story out
Outputs of the project included an open letter to commissioners of learning disability services and a powerful video featuring the people who took part.
Since then, the project has been discussed in forums, such as at an NHS conference for the learning disability and autism national housing community of practice.
We hope continued recognition of the findings at events and groups such as these will drive change and put the voices of people with learning disabilities at the centre of any discussions about housing.
It is important to remember that at the heart of the entire project are real people and their stories. Any outside decision has the potential to significantly impact their lives and ability to live independently. Person-led housing should not be the exception but the rule.
As one contributor said: “We want to inspire you to take some time making decisions that affect us. To make sure options are really options and make chances that truly put people first.”
If extra time, resources and funding are dedicated from the start when discussing a person’s housing options, it can prevent significant future problems, lowering the risk of loneliness, discomfort and sensory overload.
When seen as individuals with unique needs and preferences, people with learning disabilities can live happy, fulfilling lives in homes they love and which suit their needs. They do not have to just cope – they can thrive. n
Chloe Umpleby is acting senior communications officer and Ben McCay is service quality director at Thera Trust
