There are many areas of the law that affect people with a learning disability and their families and carers - including the Mental Capacity Act, Lasting Power of Attorney and deprivation of liberty. 

If you have a question that we haven’t answered below, you can get in touch with our helpline Mencap Direct: 0808 808 1111 https://www.mencap.org.uk/mencapdirect

What does mental capacity mean?

Mental capacity is the ability to make an informed decision based on understanding a given situation, the options available, and the consequences of the decision.

What is the Mental Capacity Act? 

The Mental Capacity Act 2005 is a law which protects vulnerable people over the age of 16 around decision making. It says that every adult, whatever their disability, has the right to make their own decisions wherever possible. It also provides a legal way for people to make decisions for someone who may lack capacity, and gives guidance to make sure that decisions taken in this way are in the person’s best interests. If you are a family carer of someone with a learning disability, you may find our Mental Capacity Act resource pack useful: 

https://www.mencap.org.uk/sites/default/files/documents/mental%20capacity%20act%20resource%20pack.pdf 

In what situations is the Mental Capacity Act used?

Any decision about a person’s mental capacity is always taken in relation to a particular decision at a given time. These can be everyday decisions about what to eat or what clothes to wear - family or carers may assess capacity frequently and support people to make their own decisions like this. Some decisions are more significant such as where to live, how to spend money or what medical treatment to have. Professionals may be involved in assessments which include these bigger decisions. There are some decisions which cannot be made for another person under the Capacity Act, such as getting married or consenting to sex 

What are the main points of the Mental Capacity Act?

The Mental Capacity Act follows 5 principles:

  • Everyone is believed to have capacity to make decisions unless it can be proved that they do not
  • A person should be supported to make their own decisions using all practicable steps before it is decided that they are unable to do so
  • A person should not be considered unable to make a decision because it is considered unwise or eccentric by others
  • Any decision made on behalf of someone who lacks capacity must be made in their best interests
  • Any best interests decision must take account of all the circumstances and take the least restrictive course of action available to maintain the person’s basic rights and freedom.

How is capacity assessed?

To have capacity to make a particular decision at a given time a person must be able to do all of the following:

  • Understand the information relevant to the decision  including the reasonably foreseeable consequences of making or not making the decision
  • Retain that information - long enough to make the decision
  • Use or weigh the information - as part of the decision making process 
  • Communicate the decision - in any recognisable way

This four point capacity test looks at the decision making process rather than the decision itself. Professionals are expected to record their use of the test as evidence that it was carried out. 

What does the Mental Capacity Act mean for someone’s care plan?

Care plans should include assessments of capacity as appropriate for the different elements of care provided as set out in the Code of Practice.

How can someone with a learning disability be supported to make their own decisions?

Most adults with a learning disability are capable of making their own decisions, particularly when clear, accessible information is provided.  It is important to give everyone the opportunity to be involved as much as possible in decisions about their lives. Just because a person cannot make a decision by themselves does not mean they will not play a part in the decision making process, and they should always be at the centre of any decision. Before deciding that someone lacks the capacity to make a decision all practical and appropriate steps must be taken to help them make the decision themselves. These steps must take into account the person’s individual circumstances and needs.  

What role do families and carers have to play in helping someone with a learning disability to make decisions?

Families and carers have a wealth of information that can keep a loved one at the centre of decision making. Where there is uncertainty in how best to involve someone in a particular decision support can be requested. 

We recommend that:

  • All relevant information needed to make a decision must be provided and information on all other alternatives
  • Make the person feel at ease, is there a particular time of day or place which suits them better?
  • Communicate with the person in the best way to help them understand and express themselves, and use different ways of communicating such as signs or symbols
  • Use someone who can communicate best with the person. For example, a family member, support worker, interpreter, advocate, speech and language therapist
  • Give the person lots of extra time to think and respond, breaking decisions down into simple steps and, if necessary, repeating the conversation several times
  • Put off making the decision until a time when circumstances are better for them
  • Use someone else to help the person make a decision or express a view once the information has been provided.

Who makes best interest decisions if the person with a learning disability I support can’t? 

The Mental Capacity Act says that decisions made in relation to a person who lacks capacity must be made in their best interests and sets out how this should be done using a best interests checklist (see the list below). Someone who makes the decision on behalf of the person is called the decision maker. They have the responsibility of making the decision after listening and weighing up all views and including the person as much as possible.  A decision cannot be made based on appearance, age, medical condition or behaviour – everyone is valued and treated with respect.

To make a best interests decision the decision maker must:

  • Consider all relevant circumstances relating to the decision in question
  • Consider if the person will have capacity sometime in the future in relation to the matter – if so when and can the decision be deferred?
  • Consider the person’s past and present wishes, feelings, values and beliefs – through things they may have said to other people, how they behaved in similar circumstances in the past, and from anything they have written down. This places them firmly at the centre of the decision making process
  • Consider the views of family members, parents, carers and other relevant people who support them or are interested in their welfare, if this is practical and appropriate
  • As far as reasonably practicable encourage and permit the person to participate
  • Any decision made should aim to be the least restrictive option.

The full checklist is in the MCA code of practice.

What is the best interests checklist there for?

The best interests checklist ensures a balanced decision.  Everything is considered equally, with the aim of finally doing what is in the person’s best interests (rather than in the best interest of finance, medicine, or even the views of the most assertive person).  Essentially it would be what the person would choose for themselves if they could. Professionals involved in the care of a person who lacks capacity should make sure a record is kept of the process of working out the best interests of that person for each relevant decision. When someone lacks capacity to make a decision and a best interests decision is being made, the law is clear that the person should still be involved as much as possible in the decision. 

Mencap and BILD’s Involve Me resource is about creative ways that can be used to ensure people remain at the heart of decision making, and how their preferences can be captured and used to influence decisions about their lives even if they lack capacity to make the decision.

I am a family member or carer to someone with a learning disability and don’t think I’m being involved in their best interest decisions. What can I do? 

We have a guide which helps to explain this, whichwas developed in partnership with Ambitious About Autism, Mencap and the Challenging Behaviour Foundation. It explains the rights of families to be consulted when best interests decisions are being made and provides template letters to challenge when this isn’t happening.

What if I don’t believe the final decision made is truly in the person’s best interests?

Families have a right to challenge a best interests decision if they do not think the decision made is really in the person’s best interests.

There are various things that can be done, for example:

  • Ask for an advocate to be involved
  • Ask for a second opinion
  • Make a complaint

If none of these things work, and there is still a disagreement, the Court of Protection could be asked to decide the matter. See the best interests letter templates we developed with Irwin Mitchell solicitors 

 http://www.irwinmitchell.com/activities/best-interest-decisions-tool

Can I get legal authority to make decisions on someone’s behalf?

The Mental Capacity Act provides a range of ways in which people can formally act for someone who is unable to make their own decisions, and to obtain legal authority to make decisions on someone’s behalf. For a person who lacks capacity, any decision about their health and welfare should still be made using the best interests decision making process.  Remember that this includes consultation with all relevant and appropriate people.  

Family members and carers retain their right to be consulted as part of this process in the same way that a Lasting Power of Attorney (LPA) or deputy would be part of a best interests decision.  An LPA or deputy would not have the final say but their opinion would be considered by the decision maker.

How is a Lasting Power of Attorney (LPA) appointed?

The person who appoints the LPA is the person with a learning disability - also known as the donor.  To appoint an attorney under the Mental Capacity Act the donor must be at least 18 years old and have capacity to request another person to act on their behalf.  

They can appoint more than one LPA and they can act jointly or severally – the donor can specify certain LPA's for certain responsibilities in the application. Some people include family members and a professional to ensure a balance of views is in place.  LPA's have a duty to follow the Mental Capacity Act. 

A Lasting Power of Attorney can:

  • Oversee health and welfare decisions and/or financial decisions if at some time in the future the donor lacks capacity to make those decisions.
  • Only makes decisions once the person is deemed to lack capacity
  • Can make decisions about the donors finances either before or after they lose capacity, as itemised in the LPA application, if they are a finance LPA.

How are Lasting Power of Attorney applications made?

Applications are made through the Office of the Public Guardian.  Forms must be submitted and authorised for LPA to be legally in place.

There is a registration fee for each type of LPA. For more information about how to apply visit the government’s website: https://www.gov.uk/power-of-attorney/overview

What happens if the person with a learning disability I support is not able to choose a Lasting Power of Attorney?

If someone with a learning disability does not have the capacity to choose an LPA, there is the option to appoint Deputiesby the Court of Protection.  In the majority of cases the deputy is likely to be a family member or someone who knows the person well.  A deputy can be appointed for decisions involving property and finance and/or decisions involving health and welfare.

What does a Deputy do and what powers do they have?

The deputy acts as an agent for the person.  Their powers are decided by the court and can be wide ranging, including management of all or part of the person’s property, or more restrictive such as deciding on a particular financial transaction.Deputyship for property and affairs is only necessary if a person has significant savings or property.  If their only income is welfare and benefit funds and they have no savings then appointeeship is sufficient (see below).

Deputyship for health and welfare is less common, since for someone who is found to lack capacity a best interests decision making process would automatically be followed.  For example, if there were health concerns about someone who lacked capacity to make their own decisions about treatment, then any decision would be made through the defined best interest decision making process.  Part of the best interest checklist is to consult all relevant people which should include next of kin as well as health and care staff - so deputyship (or LPA) would not overrule any best interests decision but be part of it in the same way that next of kin would be involved.

Applications are made through the Court of Protection and there is a fee to register for each type of deputyship. Some people enlist the support of a solicitor which will incur additional costs.  

There is further information about deputyship on the government’s website: https://www.gov.uk/become-deputy

For more information about making decisions about money, property and welfare

www.challengingbehaviour.org.uk/learning-disability-files/18-GGetting-legal-Authority-to-make-decisions-about-money,-property-and-welfare..pdf 

Are there other types of roles other than Lasting Power of Attorney or Deputies?

Yes. An Appointeeship is an alternative way of managing finances on behalf of someone lacking capacity. This power is not available under the Mental Capacity Act and is arranged through the Department of Work and Pensions (DWP).Appointeeship is limited to income derived from benefits and does not cover property or savings.There is no cost to become an appointee. There is information about appointeeships on the Sense website:  http://www.sense.org.uk/content/managing-benefits-behalf-somebody-else

My child with a learning disability is reaching adulthood, can I still be involved in decisions about their life? 

The law is clear that every adult - when a young person turns 18, whatever their disability, has the right to make their own decisions, where they have capacity to do so, and should be supported to do so wherever possible. Under the Special Educational Needs reforms, young people will become primary decision makers about their educational support from the age of 16. If the young person has capacity to make these decisions it does not mean parents cannot be involved – young people can continue to have their parents involved as much as they want.

What happens if my child is unable to make his or her own decisions?

The law also recognises that some people may not be able to make their own decisions. The Mental Capacity Act (2005) is the law that outlines how decisions are made concerning adults. It applies to people over the age of 16. When a person is unable to make their own decision because they do not have the mental capacity to do so, other people have to decide what is in that person’s ‘best interests’.

It is important to remember that a person may have capacity to make some of the decisions in their life but not all of them. Deciding if someone has capacity is always decision specific. Family members can continue to make many decisions for their adult son or daughter in their best interests. However, this will not automatically be the case in all aspects of their son or daughter’s life. Importantly, however, the Mental Capacity Act requires professionals to consult with family members when an adult lacks the mental capacity to make a decision for him or herself.

I’m a family member to someone with a learning disability and worried that decisions by professionals aren’t being made in their best interests. What can I do?

Family members can challenge professionals if they feel that they are not being involved. Ultimately, families can ask for things to be referred to the Court of Protection if they feel that their involvement is being limited or decisions are being taken that are not in the family member’s best interests.There are some options that a family member can consider if they want to seek legal power to make certain decisions on behalf of their adult child, including applying to become a Deputy through the Court of Protection. This can be in relation to things like financial or welfare matters.There is more information about this issue in The Challenging Behaviour Foundation and Respond’s Meeting the Challenge family 

What are Deprivation of Liberty Safeguards?

The Deprivations of Liberty Safeguards (DoLS) are there to protect people who are being cared for in a care home or hospital in a very restrictive way – so restrictive so as to amount to a ‘Deprivation of liberty’ – and who lack capacity to consent to these arrangements.They are to ensure that any decision to deprive a person of their liberty is in the person’s best interests, properly authorised and monitored.There is a process for hospitals and care homes to follow: Whenever a care home or hospital (referred to as the ‘managing authority’) identifies that a person who lacks capacity is being deprived of their liberty or risks being deprived of their liberty they must apply to the local authority (referred to as the ‘supervisory body’) for authorisation of the deprivation of liberty. When the local authority receives an application for authorisation they will arrange a series of assessments. One of these will be a best interests assessment. It is crucial that people are only deprived of their liberty if it is in their best interests. Families must be consulted when making the decision about whether it is in the person’s best interests to be deprived of their liberty (see MCA FAQ for more information about right to be involved in best interests decisions and what to do if you are not being involved or disagree that the decision made is in the person’s best interests).

If the Deprivation of Liberty is authorised  the person will have a ‘Relevant Person’s Representative’ (RPR). The person and their representative have particular rights under DoLS, including being able to request a review of the DoLS authorisation at any time and accessing the Court of Protection if necessary. In many cases the RPR will be a family member, but not always. When the representative is a family member, both the family member and the person have the right to an independent advocate to support them (called a 39D IMCA).

Note: The Deprivation of Liberty Safeguards only apply where detention under the Mental Health Act is not appropriate for the person at that time. A person wouldn’t be under the MHA and DoLS.  

Are there other kinds of situations - other than in healthcare - where someone could be wrongly deprived of their liberty?

Yes. People can be deprived of their liberty in other settings such as supported living. However, the Deprivation of Liberty Safeguards don’t cover these settings, so the above process doesn’t apply. However, any ‘deprivation of liberty’ must still be authorised. This is done through an application to the Court of Protection which decides whether or not to authorise the deprivation of liberty. The meaning of ‘deprivation of liberty’ has recently been clarified. The test as to someone is deprived of their liberty is if the person is under continuous supervision and control and is not free to leave, and the person lacks capacity to consent to these arrangements.

For more information about the deprivation of liberty safeguards see:

www.scie.org.uk/mca-directory/files/20150120-DoLS-easy-read-DH.pdf