Facts for Families: Supporting people with Profound and Multiple learning disabilities

Choice and control

We believe everyone should have choice and control of their own lives. For those with a relative who has severe learning disabilities and complex needs the idea that they can make their own decisions and choices may seem a difficult one to comprehend. How can someone make decisions if they are unable to speak?

As family and friends you have an important role to play in helping us identify what is important to your relative. What does the best kind of support look like for them? What are their gifts and talents? How do they make choices?

• Just because people don’t use words to communicate it doesn’t mean they don’t have anything to say. People make choices in different ways. We aim to get to know people really well, by learning what they are communicating (by noise, gesture and/or body language) and by learning from family and friends. Doing this can give us a good picture of what a person likes to eat, whether they like a busy or quiet environment and what sort of music, if any, makes them smile.
• We learn from family, schools and other professionals about the best way to communicate. Some people can make simple choices using pictures and, at annual reviews or other planning meetings, we create a list of things that are important to each individual and activities they enjoy. This way, when a person chooses from a range of pictures, even if it’s a random choice, they are in control instead of the support team. We will make sure the choices that are offered are suitable for the weather or current health of the person.
• We also use accessible housing and technology to improve daily living which can create greater independence.

When making choices about the bigger things in life, like who supports your loved one or who they live with, we watch how they respond to people and offer the chance to be involved in colleague ,recruitment. With the smaller things that are important to all of us, like choosing what to wear, we also learn from people’s responses.

While people may not be able to do things like manage their own money, they can be supported to ensure they have good lives and the money is spent in a way that is outlined in their ‘My Support Plan’. Where people have personal budgets, families can help manage this on their behalf. Having control of money might also include little things like making sure the person’s purse or wallet is in their own bag when they go out and about.

Some people need more help than others to make choices and some may need the full support of others to make decisions for them. Under the Mental Capacity Act all decisions must be made in the person’s best interests. We would always include family and other people who know the individual best when making decisions. We have provided information for families on the Mental Capacity Act in our ‘Facts for Families: Seeking consent from the people we support’.

You can talk to us about a decision making agreement so we are clear about which day to day decisions we will make with your relative and the things they would like to be involved in.

Paula snuggles the side of her face into her soft woolly fleece whenever she wears it. This tells us she likes wearing that fleece and enjoys the feel of it against her skin, so when we take her shopping for clothes we always hold the fabric to her face to see if she likes the texture.