Skip to main content

Someone said my brother 'lacks capacity' because he has a learning disability. What do they mean?

‘Mental capacity’ refers to a person’s ability to make decisions. Whether someone lacks capacity is determined on a decision-by-decision basis. For example, your brother may have the capacity to decide what to eat, but may not have the capacity to decide whether to have an operation or not.

Your brother can’t be labelled as ‘lacking capacity’ in all areas. If someone suggests that your brother ‘lacks capacity’, your next question to them could be ‘lacks capacity for what decision?’

Different laws in the UK countries govern mental capacity:

Read more in our guide on Decision-making here.

My Dad and I still make all the day-to-day decisions for my autistic non-verbal sister. Can we keep doing this?

You and your family might think of yourselves as ‘next of kin’, but the law doesn’t recognise that next of kin have the right to make decisions for someone else. All adults have the right to make their own decisions wherever possible and mental capacity laws apply to everyone, not just paid carers or professionals.

If a person is unable to make a decision for themselves, the law states that others can act in their ‘best interests’. Your knowledge of your sister will help you judge whether she can make a decision or not. So as long as you are acting in your sister’s best interests, you and your Dad can continue to make most day-to-day decisions on her behalf.

My sister can’t make financial decisions, and I’d like to do this on her behalf. Do I need to get permission from the court?

If you want to help your sister manage her benefits, then you can become her appointee. You can apply to become an appointee through the Department of Work and Pensions here, and there is no cost to this. Being an appointee doesn’t cover savings or managing property – for this you would need a different permission.

If you want to help your sister with bigger financial decisions, like managing savings or property, then you will need to apply for permission to do this. The process and the cost of this varies depending on which country you live in:

  • In England and Wales, this is called power of attorney or deputyship
  • In Scotland, this is called continuing power of attorney or guardianship
  • In Northern Ireland, this is called enduring power of attorney or controllership

Find out more:

  • Download Sibs guide on Decision-Making here (read page 4 for an overview of mental capacity and pages 6-8 for more detail on the question above)

My brother can’t make important decisions about his health and I’d like to do this on his behalf. Do I need to get permission from a court?

There are different laws in the UK countries that determine the permission you need. Different fees will apply.

Download our guide on Decision-making to find out more.

My brother is 34 years old. My parents still treat him like a baby, but I think he could do so much more with his life. What can I do?

In terms of improving your brother’s quality of life, start by suggesting activities that you feel he would enjoy. Start small – even everyday things like giving your brother a choice of two different drinks offers him more control over his life. It may be easier for your parents, and your brother, to take an introduction to new things gradually. When you’re talking to your parents about local groups or activities you think he’d like, try and leave some written information or a website for them to re-read and think about. Join our private Facebook community #Siblife to chat with other siblings who have also faced this issue.

I want to help with the decision-making around my sister's care but my parents don't involve me. What can I do?

Your views are important. You have the lived experience of growing up with your sister. Your parents, family friends and any health or social care professionals involved with your sister’s care haven’t had the same experiences as you and don’t know your sister in the same way. If you have suggestions you would like to share in a decision-making process you can contribute these as an individual in your own right. Any decisions which are made in your sister’s best interests should be made whilst collaborating with those who know her well – including siblings. Let any professionals involved with your sister’s care know that you would like to be involved and to include you in invitations to meetings.

My brother's support workers don't make him brush his teeth at night because he hates doing it. They say it's his decision not to do it, but I'm worried for his health.

It depends on whether your brother is able to understand the long-term implications of not brushing his teeth:

  • If he does – and he still chooses not to – then yes, it is his decision to make
  • If he doesn’t – then a best interests decision needs to be made and he needs to be supported in looking after his teeth

You know your brother well and will probably be aware of his ability to understand the long-term consequences. Discuss this with the support workers and see if they can support your brother to brush his teeth in other ways – using a particular paste, brushing to music or doing it at a different time of day. You will be able to give them ideas on what might work and what won’t.

If the support workers are unresponsive to this, contact Adult Social Care for advice. They can carry out a formal mental capacity assessment for your brother. They can hold a meeting with support workers to ensure a new method for supporting your brother to brush his teeth is included in his care plan.

Read more about mental capacity in our guide on Decision-making here.

I don't agree with a best interests decision that my sister's care home has made about her.

If you don’t agree with a decision that’s been made, you can ask for a best interests meeting to discuss the situation with staff members. You can give your perspective and ask them to discuss theirs in more detail. Care home staff should be documenting such decisions and be able to justify them.

If you still disagree with the decision, you can make a complaint in writing to the care home manager, clearly stating what you feel your sister’s best interests are in this situation. If you believe that your sister is at risk of neglect or abuse you can contact Adult Social Care to make a safeguarding referral.