Sometimes it can be hard to ask for what you want. You might feel you don’t know how to ask, you might think you have no right to ask, or you might be worried about upsetting others by asking.

These are perfectly normal anxieties for anyone, but for someone with a learning disability these feelings can be intensified.

The Godalming-based charity Just Advocacy was formed precisely to overcome this situation and to allow those with learning disabilities to have their say.

It currently represents people across NE Hampshire and Surrey.

As chief executive Jennifer Kelsey explained, the idea is to give people with learning disabilities a voice, allowing them to have the same choices and support as everyone else.

The service offered is free of charge to the user as long as they live within the catchment area, and there are no requests for costs or contributions from them.

Instead, the work is paid for by the relevant county councils and supplemented by various fundraising efforts.

The number of cases being dealt with by the charity varies at any given time because it tends to deal with crises as they happen.

The work can involve anything from changing accommodation to bullying, or from helping someone who needs to go to court, to sorting out financial problems.

Or it could concern access to education, work or day services. The aim is to allow them to express their wishes and voice their worries.

Jennifer said: “Wherever there is a need for representation, we will be there. One advocate helped a client get a book published, for example. So it doesn’t have to be a situation where there is conflict.

“We don’t necessarily speak for our clients because we might just be there to give support and, certainly, we want people to become more confident and learn to speak for themselves.

“When we do speak for them, we make it clear that they must say what they want to say, not what they think they should say.

"We also explain that it is OK for them to say no — we have to be careful that someone isn’t agreeing to something because they think they should, or they have no choice.

“People can refer themselves to us or someone else, like a family member or care worker, can do so, but the person concerned has to want an advocate. We can’t take a client on just because someone else thinks they need one.”

Because many people with learning disabilities live in residential or supported homes, living arrangements are a common source of casework for Just Advocacy.

It might involve moving to a different home or to more independent living, and it is important that the individual has the chance to not only express their wishes, but also understand the consequences of their choice.

Jennifer continued: “We can represent people with a full range of learning disabilities, from mild to complex.

"Unless they indicate otherwise, everything we discuss with them is confidential, unless there is a risk of harm or abuse to that person or a third party or we are ordered to disclose the information by a court.

“Sometimes, we have to be very diplomatic. An individual might find it hard to go against their parents’ wishes, for instance, but we are there to support them and allow them, as adults, to make their own decisions.

"This means we might have to work to explain the situation to the parents and get them involved. We want them on board, not isolated.

“But we are never there to make the decision for the individual and we are not counsellors. If we feel there is another issue going on, then we will refer them elsewhere.”

Janette Turner, the advocate who represents Surrey, added: “It’s important we all work together.

“We don’t want parents to feel threatened by the presence of an advocate. And we also like to open up discussion so our clients think about the consequences of what they want to do.
"For example, they might not have appreciated just what is entailed in living alone.”

Much of Just Advocacy’s work is done on a one-to-one basis, but as a way of helping people to gain confidence and improve knowledge, the charity also runs self-advocacy groups in which the participants have the chance to discuss various issues together.

Dionne D’Sa is senior executive for NE Hampshire and is based at Just Advocacy’s Aldershot office.

She says the self-advocacy groups are proving very popular and successful.

“We have three at the moment in the Hampshire area — one in Farnborough, one in Fleet and one in Aldershot — and we talk about issues that don’t need to be discussed on a one-to-one basis, such as bullying,” she said.

“It is useful to the participants to find out about the problem, how other people resolved their situation and also the practical ways to sort something out.

“We also encourage them to think about how they can protect themselves so they don’t get into a vulnerable situation in the first place.”

Where the self-advocacy groups are so useful is by encouraging participants to speak out in a non-threatening environment so they become accustomed to talking in front of others before moving on to real situations.

Jennifer explained that inability to speak is often a lack of confidence. This can make people feel frightened and this in turn can lead to confusion and anger.

“People with a learning disability often feel more comfortable in the company of others with a disability, even if it isn’t the same type of disability,” she said.

“They can understand and empathise with each other about issues like bullying, which is often a big problem. We then give them the tools to deal with it and how to complain about it.”

Taking this a step further, an advocate can offer practical help, too. A typical case involved a girl with Down’s Syndrome who was bullied.

The case went to court and her advocate was able to take her there in advance to see the courtroom when it was empty and discuss the type of questions she might be asked.

She was also able to decide whether she wanted to speak in person or via a video link.

Jennifer continued: “Exactly what we do depends on the level of disability, and sometimes people with complex needs won’t be competent to ask for advocacy, so then we have to rely on others to refer them.

“But conversely, we also have to watch out for those with mild disability who can be very vulnerable, but because they have a degree of independence, they can almost become ‘lost’ in society.”

Of course, the fundamental principle upon which advocacy depends is com-munication.

Understanding what a person wants can be difficult when their speech is limited.

However, many disabled people use a special sign language called Makaton which uses a combination of signs, facial expressions, gestures and pictures to get information across.

This, coupled with the individual’s personal plan which sets out all kinds of information about them, including things like activity preferences, can help an advocate get a good picture of that particular person, all of which is useful when acting in their interests.

Jennifer continued: “People with a learning disability are adults, not children, and they like to be treated as such.

“They are aware of how they are being treated and also how others are treated.

“And it’s all about understanding this. Little things can make a big difference to someone, like letting them decide when they want to go to bed, or what they want to eat.

“So, we have developed some training packages to help home and support staff appreciate and respect the service users’ individuality and work in a person-centred way.”

Dionne added: “People with learning disabilities want to be treated with dignity and respect like anyone else.

“They want to have choices, but too often they’re not offered choices, or they’re given too many choices, which is confusing for them, or the choices are inappropriate. So it’s important that people working and living with our clients take this on board.”

Although the service users clearly benefit from the help of advocates, the advocates themselves also get a lot out of their work.

Janette said: “I love the work because it’s so varied — every day is different and no two cases are the same. You get out and about and meet lots of people.”

Dionne said that for her, one of the greatest rewards was knowing her assistance had had a positive impact on someone’s life.

“For example, one day I bumped into one of our former clients, a young lady whom I hadn’t seen for some time,” she said.

“We had helped her to move from one accommodation to another and I couldn’t believe how much the change had improved her life.

“She had been very withdrawn in her original accommodation, so I was delighted to see that, thanks to the move, she had turned into a happy, outgoing person, and as a bonus, her health and appearance had got a lot better too.

“She had acquired so much more confidence, and she had learned to be more assertive.

“Once she had had the experience of speaking out, being listened to, and getting what she wanted, she was able to ask the next time.

"And it’s at times like this that you realise just how effective advocacy is.”

To contact Just Advocacy: for Surrey call 01483 527759 and for Hampshire and Berkshire borders, call 01252 322204. Alternatively, visit www.justadvocacy.org.uk