Decision making post 16

It is important for families to understand the legal framework around decision making for young people once they turn 16. It can come as a surprise to some parents to discover that they do not have the automatic right to make decisions for their older teenagers and adult children with Down’s syndrome.

When a person turns 16, under the Mental Capacity Act (2005), the starting point is to assume they have capacity to make decisions for themselves. The law says a person must be given relevant information in an appropriate format and time to understand it before a decision on their capacity is made. This may mean that over a period of time pictures, symbols, diagrams, videos, sound clips, verbal conversation or other formats that the person normally uses to communicate are used to help the person to understand the options open to them. This is known as supported decision making.

The Mental Capacity Act (2005) states ‘a person’s capacity (or lack of capacity) refers specifically to their capacity to make a particular decision at the time it needs to be made’. This means capacity must be assessed in relation to every decision that needs to be made, at the time it needs to be made. Therefore it is not possible to assess overall capacity and make blanket decisions on a person’s behalf based on the fact that at a particular time they were found not to have capacity.

Never assume that someone does or does not understand and that they can or cannot do something. Have high but realistic expectations. You need to keep re-thinking about what is possible for the young person as they grow and develop. Some days all might go really well, some days they may not be able to do things as well as yesterday and tomorrow they might well do something you didn’t know or think they could do at all.