Learning Disability England members responses to consultation on Mental Capacity Act changes and priority areas of concern

What this is about

Depriving someone of their liberty is one of the most serious things the state can ever do to it’s citizens. It means that even if you can tell people what you want, you can’t decide for yourself things like what you want to do, or where you live.

Sometimes it is right to take away people’s freedoms, for example if someone has done something bad like attacking another person, then there will be what is called a trial. A trial looks at what happened, and what everybody says they think happened. Then a jury decide whether someone is guilty or not. That means they think the person did do something wrong and can be punished. If they have done something very seriously wrong, the person might be sent to prison. It is very important that this decision is made by what is called a jury of your peers; that means people who are like us. Everyone gets to be judged by a jury of their peers. It is a very important part of the law.

Sometimes disabled people don’t have the choice to make their own decisions. This can be because decisions are made about us, without us, by people like social care commissioners, or care home managers. In the past, decisions about disabled people were usually made that way, but these days most people know better and try to make sure they think about what the disabled person wants and needs. The person deciding about you should ask you what you think and feel, and if you can’t speak for yourself, they should ask your family, friends or advocate to help them find out what you like and want.

The government are thinking about how these decisions should be made, especially for people who can’t decide for themselves, or who might be what is called a risk to other people. That means that someone might hurt another person without meaning to, or without understanding what they have done. Usually when someone hurts another person, it will be the court and jury who decide what should happen. But, for some disabled people that decision can be made about them, without a court. We think that is a form of discrimination – it means disabled people are treated differently from other people, because they are disabled.

What we have heard from members about these changes

 At LDE we asked our members what they thought about these decisions and changes. We found out that everyone agreed some of these changes would be bad. Often disabled people, families and providers disagree a bit, but everyone agrees some of these changes would make things worse than they are now.

Everyone was worried about the manager of a service being the person who decides about the disabled person. Learning disabled people are especially worried that this will be like going back to the days of the institutions. All of our members who told us what they think about this said it should be an independent person who gets to make decisions. Otherwise it will be like the judge, jury and gaoler being the same person. There won’t be anyone to help, or to appeal to if you don’t agree with the decision.

Our members, Sunderland People First said

There is a risk that we take away people’s independence and giving power to people that may not be doing a good job – look at Winterbourne View.

Disabled people and their families are especially worried that there is no requirement to consider the persons own wishes. That is how the institutions were. This would be bad enough if there was an independent assessor. We can’t think of another group of people this could happen to, even people who have committed terrible crimes get to have a lawyer to speak for them and a judge to decide what happens next. Our members, Grace Eyre Ambassadors told us very clearly,

We do not want to go back to the days of the institutions!

We were all worried about the change in language to describe people as being of ‘unsound mind’. Learning disabled people and their families don’t really understand what this is supposed to mean. There’s no precise definition, it’s stigmatising and it doesn’t make any sense. We think people who do things like throw themselves out of planes on the edge of space to set records are probably of unsound mind, but people support them to do what they want to do. We don’t understand how this would apply to people with learning disabilities.

Some family members said they thought that if a disabled person is going to be deprived of their liberty because of worries about the safety of others, then it should always be the Court of Protection to decide that. One parent of a young adult with learning disabilities and autism told us

Families still have precious little influence in the care of their loved ones. Access to the Courts is expensive and time consuming – and providers know that. These amendments will make a poor situation even worse and make abuse of power by providers much more likely

What we are doing next

We will make sure what members tell us is fed back to people making decisions on the law, the policy leads in government as well as sharing it with other groups and organisations who are worried about the changes to the law too.

LDE are working with other organisations to join up on what we agree to share ideas, influence more and be a stronger voice together.

We will keep in touch with members on this

You can find more information and an easy read guide to the planned changes on Mental Capacity here