Young people’s rights to make their own decisions

This video was produced by Dorset County Council. For Shropshire signposting and support information see the resources listed at the bottom of this page.

Making decisions (over 16 years)

As children become young adults, they have more rights and control over their lives and what happens to them. The part that their parents play in their lives will also change to reflect this. However, parent carers of young people with SEND will continue to have an important role in the lives of their young people.

The law says that young people from age 16 have a right to make decisions about their own future. This is called the Mental Capacity Act 2004. It sets out 5 principles of mental capacity:

It is assumed that people can make their own decisions (have ‘capacity’)
People should be supported as much as possible to make their own decisions before anyone concludes they cannot
People are allowed to make decisions that others may think are unwise or wrong
There may be times when a person cannot make some decisions (‘lack capacity’). When this happens, any decisions made by others must be in the person’s best interests
The person should still be involved as much as possible in the decision and the decision made for them must be the least restrictive one.

This means that young people who are disabled or find it difficult to understand complex information, can make some or all decisions themselves if they have the right support.

How is capacity assessed

The Mental Capacity Act says that deciding whether someone can make decisions is decision specific. Someone may be able make small decisions like what they want to eat for lunch but may not be able to make big decisions like where they will live.

Capacity is assessed for a particular decision by asking two key questions.

Test one: Is there an impairment in the person’s mind or brain that makes them unable to make the decision?

An impairment might be permanent such as a learning disability or brain injury or temporary/fluctuating due to mental health problems, side-effects of medication or if they are unconscious.

Test two: Can the person make the decision?

This is a functional test that looks at 4 areas. Can they -

Understand information given to them (information should be given to them in ways to help them understand)
Retain that information long enough to be able to make a decision
Weigh up the information in order to make a decision
Communicate their decision by any possible means (e.g. talking, using sign language or squeezing someone’s hand)

Who undertakes mental capacity assessments

Staff in health and social care receive training to undertake mental capacity assessments. Where complex or major decisions are being looked at, experts like psychiatrists or psychologists can be involved.

If you are concerned about the mental capacity of a young person to make a decision, you can discuss this with the professional who is involved where a decision needs to be made (e.g. health professional if a health decision, care provider if a care decision)

Next steps

If it is decided that a young person can make their own decision they should be provided with support so they can go ahead and make the decision.

If it is decided that a young person is not able to make their own decision, consider:

Whether they may be able to make the decision in the future
If so can the decision be delayed until then, so they can make the decision for themselves.

Making a decision on behalf of a young person - best interest decisions

The decision is normally made by the carer responsible for day-to-day care, but if decisions about treatment, care arrangements or accommodation need to be made, a doctor, nurse or social worker may be the ‘decision maker’. The Mental Capacity Act provides a check list of what to consider when making a best interests decision.

Where best interest decisions are made by professionals, family members/carers should be consulted and be part of the decision-making team. If there is an attorney or a deputy appointed, they will have to be consulted. For more information about best interest decisions visit Rights and Advocacy - Challenging Behaviour Foundation and this website by lawyer Luke Clements has information on the role of an attorney or a deputy.

Shared decision making in health care and treatment

The mental capacity laws do not mean that young people have to make decisions about health care and treatment on their own if they do not want to. Health professionals, family members and anyone else who usually supports a person will be able to help as they have always done. This is called shared decision making. This information sheet explains when young people can make decisions about their healthcare.

The Who decides? - The 11to25hub website has useful information about the questions young people have when it comes to who can make health-related decisions and when. It was developed by listening to young people, their parent carers and healthcare professionals.

Making decisions (under 16 years)

For children under 16, the Mental Capacity Act does not apply, however there is a legal principle called ‘Gillick competence’ which allows children under 16 to consent to their own medical treatment without parental permission. A child will be assessed whether they have enough understanding to make up their own mind about the benefits and risks of treatment. If the child is deemed competent to make their own informed decision, a doctor can treat a child without parental consent.

Further support and resources

If you are a parent carer and you are concerned about the mental capacity of a young person to make a decision, you need to discuss this with whichever professional is involved where a decision needs to be made.

Shropshire Council can be contacted using their First point of Contact number 03456789044

Shropshire Parent Carer Council (PACC) have produced a Preparing for Adulthood guide for Parent Carers and Family Carers which has a section on mental capacity.

PACC also have a community navigator service which offers personalised signposting and information provision to parent carers of 0-25 year old’s with SEND in Shropshire. The service offers information provision and support to help parent carers to be able to think ahead and actively participate in decision making relating to their child’s next steps.

More information about the MCA and how capacity is assessed can be found at Mental Capacity Act - Social care and support guide - NHS

The Challenging Behaviour Foundation (a charity for children, young people and adults with severe learning disabilities) has a useful section on their website on legal rights and decision making.

The Government has produced guidance on mental capacity and decision making for people who work in health and social care.