Institutions deprive many disabled and older people of rights, yet supported living is more cost effective. Why aren’t local authorities acting on the evidence?
he right to live in one’s own home, secure in the knowledge that you can stay there as long as you pay the rent or mortgage and comply with a few other basic requirements, is a cornerstone of our culture. It is something most people take for granted.
Imagine, though, a situation where someone had the power to force you to move – even though you’ve been paying your dues and abiding by all the other unofficial rules – simply because they wanted someone else to live there who would be an easier customer. Or what if that person could decide who came in and out of your front door, or who you could and could not have to stay overnight?
Welcome to the world of many disabled and older people. These are the rules that apply if you are in receipt of registered residential care.
In a residential care home, people have no choice or control (pdf) over who they live with, what happens in the home, or the nature and type of support they receive. There is no security of tenure, people can be moved around at the discretion of providers and residents do not have rights to full welfare benefits.
A recent statement by the Office of the United Nations High Commissioner for Human Rights reveals a number problems with institutional care that interfere with people’s human right to decide for themselves where they want to live and what they want to do when they need support in daily living.
For example, all care and support is provided by the accommodation provider; people have minimal choice or control over how the support is provided or who it is provided by, and if the person moved home they would lose the care. How can people living in that position be confident that providers will not abuse or misuse their position, or that they will deliver a good service? Are we happy, as a society, to accept that it is common practice for institutions to make these kinds of decisions on behalf of individuals?
The last 25 years have seen a gradual move towards housing and support models for disabled and older people that try to address this lack of individual rights. The approach known as supported living gives people housing rights through a landlord and a separate contract for their support, which offers more certainty and greater control over their lives. The aim was that people could choose to stay in their own home and community, even if their care and support needs changed. If the person moved home, they could take the support with them, or if the person wanted to change the care their housing would not be affected.
There is clear evidence that large institutional services provide poorer outcomes and end up costing more overall
This is not happening because commissioners want to remove people’s rights, but because they believe they can save money by returning them to institutional care – and the loss of individual rights is an unfortunate consequence. This belief is wrong. A recent review (pdf) of the cost effectiveness of different models of housing, care and support showed no evidence that residential care is more cost effective. It might be cheaper to run in the short term, but cost effectiveness also considers long term outcomes and there is clear evidence that large institutional services provide poorer outcomes and end up costing more overall.
A series of papers have identified three reasons why commissioners and providers are taking unsubstantiated decisions about the relative merits of residential care and other approaches:
- A lack of investment in research and evidence gathering that would help more informed decision making.
- The absence of commonly accepted definitions for different housing and support models. As a result, there is frequent misunderstanding about issues such as supported living – as the legal challenge in Rochdale demonstrated, and even the Department of Health acknowledges in its own Care Act guidance.
- The limited opportunities for people who use services and their families to get involved in decisions about what services are available to them. Why are people recommended for a move into residential care settings not provided with publicly funded, independent advocacy to help them consider the potential impact on their rights?
It is not that residential care providers are wilfully denying people the rights they should have. The current regulations effectively require them to withhold those rights. They state, among other things, that a person cannot legally own or rent a place in a care home – which automatically removes personal control. You have no legal rights about what happens in the building. Some places will consult residents and families, but many do not as there is no legal requirement to do so. This allows other liberties to be undermined (as evidenced by recent prosecutions) because residents have very little choice over the nature of their environment.
Some providers already try to work around this and accord people more personal control by, for example, having a code of conduct for staff on matters such as respecting personal space and autonomy. If this is possible, it should be a legal right that everyone can insist upon, not a privilege bestowed by some providers (and thus liable to be taken away).
In a paper setting out proposals for addressing these problems, the National Development Team for Inclusion is calling on governments across the UK to undertake a fundamental review of residential care. This should explore the extent to which housing and other rights could be built into residential care.
If there are insurmountable legal obstacles to allowing greater personal control within residential care settings, at least let us be honest and open about it. Then we need to make it a requirement that independent advocacy and clearer information is available so that vulnerable people can make more informed decisions about the rights they are – and are not – happy to surrender in return for care.