By Katherine Miller

Down’s Syndrome Awareness Week (18th – 24th March) and World Down Syndrome Day (21st March) are focusing on challenging society’s misconceptions about Down’s Syndrome and highlighting that a person with Down’s Syndrome should have the same opportunities as everyone else in every area of life.

The Down’s Syndrome Association highlights that ‘Adults with Down’s syndrome are leading longer, more healthy, fulfilling and varied lives. Small but increasing numbers are leaving home to live with support in their communities, getting jobs, having busy social lives and enjoying friendships and relationships.’

We believe that it is important for an individual with Down’s Syndrome to make their own decisions whenever possible and to be supported by their families, carers and friends to do this.  Here we discuss the legal position regarding decision making.

Once a child reaches the age of 18; their parents lose parental responsibility and no longer have any automatic rights to make decisions about their child.  The parents or carers of an individual with Down’s Syndrome are often surprised to discover that their role as a decision maker has changed considerably.

It is therefore important to understand how an individual with Down’s Syndrome can be supported to make their own decisions.

Mental Capacity

Mental capacity is the legal term used to refer to a person’s ability to understand and make decisions.  To make a decision you must be able:

  • to understand all the information that is relevant to the decision;
  • retain the information;
  • use it to make the decision; and
  • communicate your decision

The mental capacity of a person with Down’s Syndrome can vary significantly, however, legally we must always start with the presumption that a person has the capacity to make their own decisions; unless it can be shown that they lack the ability to do so.

What to consider

The presumption of capacity means that we should not make any assumption about the ability of an individual with Down’s Syndrome to make decisions for themselves. For each decision that needs to be made, careful consideration needs to be given as to the complexity of the decision and whether that person can make it.  Decisions about where to live or how to manage household finances can involve weighing up and processing lots of information and this will require a higher level of mental capacity than a decision about what you like to watch on TV or what activity you wish to do on a particular day.  However, every person is different and their own ability and mental capacity must be considered.

It may be that steps need to be taken to assist the person in the decision-making process, for example, presenting the information relating to the decision in a different way, using language that is more suitable or discussing the decision in an environment which is more comfortable to the individual with Down’s Syndrome.

Enabling an individual to make their own choices and decisions is really important and allows an individual to live a fulfilling life, on an equal basis with others.

Supporting future planning 

Planning for the future is an important consideration for us all and a person with Down’s Syndrome can be supported and given the opportunity to put plans in place to assist them in the future.  Families and carers might want to consider whether their loved one could make a Lasting Powers of Attorney (LPAs).  LPAs are key legal documents that allow an individual with Down’s Syndrome to give authority to another person (known as an ‘attorney’) to make certain decisions on their behalf.  It is often the case that the chosen attorneys are their parents or siblings or a close trusted friend.

A Property and Financial Affairs LPA can allow the attorney or attorneys to assist with decisions about any financial matters even if the person who made the LPA has the mental capacity to make decisions about their own affairs. This can be particularly helpful if the person with Down’s Syndrome would prefer a trusted person to help them on certain matters.

A Health and Welfare LPA appoints an attorney or attorneys to make certain decisions on their behalf relating to their well-being. For these decisions, the attorney will only be able to make decisions if it is determined that the individual with Down’s Syndrome does not have the mental capacity to make their own decisions.  This could be useful in the future if more complex decisions are needed that cannot be taken by the individual themselves.

Finally, a Will could be made if the individual has assets in their name and wants to ensure that they pass to their chosen family, friends or charity.

With all types of decisions, it’s important to consider the unique circumstances of the individual concerned. Everyone should have the right to make decisions for themselves if they have the mental capacity to do so.

If you would like to discuss your own personal situation please contact our specialist team.

One of our clients, Holly who is 27 and has Down’s Syndrome has written a blog for World Down’s Syndrome Day, take a look here.


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