This page is about your rights as a person with complex disabilities to make decisions for yourself about how you want to live your life.
It also covers what happens if you find it difficult to make decisions and your family, or other people, need to make decisions for you.
You’ll also find information about advocacy – what it is and how it works.
On this page:
- Your right to make decisions
- For parents and carers
- What is an advocate and what do they do?
- Advance decisions to refuse treatment (ADRT)
Remember, the laws are there to help you. They make sure that, together with your family and the professionals who support you, you can make the right decisions.
Sense is here for you at every stage of life
We support people with complex disabilities of all ages.
From our free play sessions for children under eight, to our adult residential care services, we’re with disabled people and their families every step of the way.
Get in touch with our team to find out how we could support you.
Your right to make decisions
In England, the Care Act 2014 is the law that covers all adult social care provision.
It says that if you are an adult with care and support needs, you have a right to have these needs met and to have control over your day-to-day life.
Local authorities must be guided by this principle.
For parents and carers
The Mental Capacity Act 2005
The Mental Capacity Act 2005 is about protecting any adult over the age of 16 who can’t make decisions for themselves.
The Act’s five principles are:
- Always assume the person can make the decision until you have proof they cannot.
- Try everything possible to support the person to make the decision themselves.
- Don’t assume the person can’t make a decision just because they make a decision you think is unwise or wrong.
- If you make a decision for someone who can’t make it for themselves, you must always decide in their best interests.
- Any decisions, treatment or care for someone who can’t decide for themselves should have the least impact possible on their basic rights and freedoms.
How can I support my family member to make a decision?
There are lots of ways you can support your family member to make a decision. This includes making sure everyone involved in supporting them takes what’s called a person-centred approach.
How do I know if my family member can’t make their own decision?
To make a decision, a person needs to be able to:
- Show some understanding of the information given to them.
- Remember that information long enough.
- Weigh up the information and use it to make the decision.
- Communicate their decision – through speech, sign language or their preferred form of communication.
It’s important to remember that most people, no matter how complex their needs, can make some decisions.
That’s why the law states that you, and everyone involved, should assume they can make the decision themselves, if they are supported to do so in the right way.
How are decisions made in my family member’s best interests?
If your family member cannot make a decision about something, then the decision will need to be made in their best interests.
Appointing a deputy through the Court of Protection
If you have a family member with complex disabilities who cannot make decisions about their personal welfare, you can ask the Court of Protection (England and Wales) to appoint a deputy for them.
Appointing a deputy is a legal arrangement. The deputy can support your family member to make a decision or, if necessary, make a decision for them.
Two or more deputies can be appointed to support one person.
You can also apply to appoint a separate deputy who can make decisions about your family member’s property and financial affairs.
What is an advocate and what do they do?
An advocate is someone who speaks and acts on your behalf and in your best interests.
They help you to express your wishes, understand information, think about the options and make decisions.
An advocate can help you to:
- Find services.
- Make sure correct procedures are followed.
- Challenge decisions made by councils or other organisations.
When is an advocate used?
Under the Care Act 2014 (England):
- If you’re receiving care and support and have ‘substantial difficulty’ making decisions for yourself, you’re entitled to have an independent advocate.
- If you’re a carer and need support, you’re also entitled to an advocate.
- Independent advocates do not work for your local authority.
- Your local authority will pay for advocacy services in your area. They can also tell you how to find and use these services.
Under the Mental Capacity Act 2005 (England and Wales):
- If you’re a person who is aged over 16 and it is agreed that you don’t have the capacity to make decisions for yourself and no family or friends to support you, your local authority and the NHS have a legal duty to appoint an Independent Mental Capacity Advocate (IMCA).
- The IMCA will speak and act for you when it comes to making important decisions about, for example, serious medical treatment or a change of accommodation.
- The IMCA must also make sure that any decisions made are legal and challenge decisions if they feel they’re not in your best interests.
- In England, local authorities appoint IMCAs. In Wales, they are appointed by a local Health Board or other NHS body.
Longer-term advocacy support
Advocacy under the Care Act 2014 is usually arranged to help you make short-term decisions.
However, there are several types of advocacy services available if you need longer-term support:
- Professional advocacy
This means appointing a professionally trained advocate to support your family member to make long-term decisions about health and care.
- Citizen advocacy
Citizen advocates are volunteers from the local community. The volunteers are supported by professional advocates.
- Peer advocacy
Trained volunteer advocates with a similar disability or experience to your family member provide support, often as part of an organised project.
- Circles of support
- A group of people provide support and advocacy.
- The person being supported is at the centre of the circle and can choose who is in the group and how they want them to support them to make decisions.
- Membership can change over time.
- A good circle will include people with different knowledge and expertise who can be called on at different times.
Local authorities do not generally pay for longer-term advocacy support. Most is available through local charities and services will vary depending on where you live.
You can also search online for ‘advocacy + your city, county or borough’ or ask your local authority.
Power of Attorney
If you have complex disabilities and the mental capacity to make decisions for yourself but would like someone you trust to do this for you, you can grant a Power of Attorney.
The person with Power of Attorney can then make decisions about your health and welfare.
You can also separately grant Power of Attorney for decisions related to your property and financial affairs.
Advance decisions to refuse treatment
An advance decision to refuse treatment (ADRT), living will or advance directive is a statement setting out which medical treatment(s) you do not want to receive at some point in the future.
You can make an ADRT, if you have complex disabilities, as long as you have the mental capacity to make such a decision, possibly supported by a healthcare professional.
An ADRT needs to be:
- Written down.
- Signed by you.
- Signed by a witness.
An ADRT is legally binding as long as it:
- Complies with the Mental Capacity Act 2005.
- Applies to the situation.
- Is valid.
An ADRT is only valid if:
- You’re aged 18 or over and had the capacity to make, understand and communicate your decision when you made it.
- You specify clearly which treatments you want to refuse.
- You explain the circumstances in which you want to refuse them.
- It’s signed by you and by a witness if you want to refuse life-sustaining treatment.
- You have made the advance decision of your own accord, without any pressure from anyone else.
- You have not said or done anything to contradict the ADRT since you made it, for example, telling someone you’ve changed your mind.
There is no special form or format for an ADRT but you might want to get professional help from a solicitor or healthcare professional.
This content was last reviewed in April 2023. We’ll review it again next year.