Mental Capacity Assessments Parent Notes

Why might it be of interest?

The mental capacity act is not, in essence, complicated.  I do admit that in application it may, at times, be rather more complex!  Whether a person HAS mental capacity or DOES NOT HAVE capacity to make a decision is integral to the decision making process and who actually makes the decision.

This will sound a bit overwhelming but when there is a decision to be made (mostly likely about care or treatment) it must be determined whether a person has the mental capacity to make this decision at this time.  The outcome of that assessment does not extrapolate to the same decision at another time or a different decision at the same time.  Decision making is time and decision specific.

This doesn’t mean you are constantly having to assess mental capacity in any formal way at all – you are probably informally assessing all the time and that’s good enough.   But there may need to be a more specific process for some decisions.

If it is determined that the person DOES have capacity to make the decision it is their decision to make.  As parents and with our young people living at home we may be finding ways to override their decision but in all other situations our young people will be allowed to make their own decisions if deemed able.  This can be difficult for parents to come to terms with.

As such, whether your young person is generally deemed able to make their own decisions (and pretty much everyone can make at least some decisions) or not it is important that you understand what the mental capacity act means for decision making.

Legislation:

Mental Health Act 1983 – the main piece of legislation that covers the assessment, treatment and rights of people with a mental health disorder.

Updated Mental Health Act 2007

Mental Capacity Act 2005

If you can’t make decisions for yourself because you don’t have the mental capacity to make them, the Mental Capacity Act 2005 tells you what you can do to plan ahead, how you can ask someone else to make decisions for you and who can make decisions for you if you haven’t planned ahead.

Not talking about the legislation today

Specifically about Mental Capacity Assessments

Why this workshop?

Mental Capacity Assessment

A term you might already have heard or may hear in the future

Often not explained well

Leads to worry and confusion

This workshop is about determining whether a person has the capacity to make their own decision(s) and the scenario when it is determined that they do not have capacity.

If there is doubt about an individual’s ability to make a decision a mental capacity assessment is carried out.

If the outcome of the MCA is that the person DOES have capacity it is their decision to make.

 What affects an individual’s ability to make decisions?

An individual’s capacity to make decisions can be affected by many factors

• short term or intermittent
• Long term

For example:

• Stroke
• Brain injury
• Mental health issues
• Dementia
• Learning disability
• Confusion, drowsiness or unconsciousness
• Substance misuse
• Anaesthetic or sedation

Mental capacity assessments are not by their nature complicated

• 5 guiding principles are straightforward:
  • Presume capacity
  • Support a person to make their own decision
  • They are allowed to make unwise decisions
  • All decisions must be in their best interests
  • All decisions must be the least restrictive option
• Basis for not being able to make a decision is straightforward
• In practice it might not always be quite so straightforward, eg
  • Differing views
  • Unclear whether a person has capacity

Before you make a decision on behalf of someone else, you must have a ‘reasonable belief’ that he or she lacks the capacity to make the decision for themselves.

• To establish whether your ‘reasonable belief’ is correct you make an assessment of their capacity.
• Assessment is simply about establishing why you have that ‘reasonable belief’

As a rule the bigger the decision the more complex / formal the assessment will be

The word assessment can sound daunting, but it is straightforward and you probably do this already.

For example, you will know which decisions your young person is able to make for themselves – what to watch on television, for example

• which decisions they can make with some help
• and which ones have to be made in their best interests – such as managing money or deciding on health

Example:

It’s turned wet and cold – really not very nice out there

Can the young person decide whether to go out or stay in

This might include being able to wear appropriate clothing

You will have assessed whether they can or not by:

• Asking questions –
  • Oh, it’s wet outside, what will you wear?
  • Do you want to go out
• Offering choices
  • do you want to wear your jumper or your raincoat
  • Do you want to go out or stay in

Their responses will be enough to tell you whether they understand or not and whether this is a decision they can make themselves or if you are going to make it.

It can be as simple as that.

The Mental Capacity Act covers all types of decisions – big and small; day to day; one off; infrequent decisions

We’ll talk more about bigger or more complex decisions

But the principles remain the same regardless so we will explore these first

The MCA is specific to:

• the decision needing to be taken
• and the time the decision is being made
• It cannot be generalised to different decisions or to decision making at a different time

Example:

Just because your young person cannot make a decision about whether to go out today you cannot assume:

• that they won’t be able to make that decision on another day
• that they can’t make another decision themselves – similar or otherwise

Just to reassure:

• You are already doing these assessments in an informal way
• You don’t need to change that
• You don’t need to write it down or tell anyone
• You must always be acting in the person’s best interests
• In general no-one can go over your head and take decisions for your young person without your input (at the very least)

You will not find professionals champing at the bit to take over decision making for your young person – the authority is likely to remain predominantly with you

2 stage functional test for capacity:

• Is there an impairment, or disturbance, in the functioning of the individual’s mind or brain? If so
• Is that impairment or disturbance sufficient that the person lacks capacity to make a particular decision

The assessment must be made on the balance of probabilities – is it more likely than not that the individual lacks capacity?  So, we use the following to determine whether a person has capacity or not.

 Let’s look at what makes a person unable to make a decision:

A person is deemed unable to make a decision if they cannot:

• understand the information relevant to the decision
• retain that information
• use or weigh up that information as part of the process of making the decision
• communicate their decision

Information can be presented in a simple form:

• Pictures
• Simple language
• Actions
• Signs and symbols

So, using our example of choosing to go out or stay in and wear the right clothes for the weather the young person would have to:

• Understand the information you are giving them – that it’s wet and cold
• Remember it
  • Not necessarily for long but for the time of the conversation and reaching a decision
• Make use of the information
  • They may understand that it’s wet and cold but have no idea how this impacts them
  • Do they understand that they may wear something different
• Tell you their answer

 They can’t make the decision if any one of these is true:

• don’t understand the terms ‘wet’ and ‘cold’
• they forget what you have asked them almost immediately
  • they may ask an unrelated question
  • they may be distracted
  • they may just look at you without any indication that you have asked them something
• they don’t understand how the weather being wet and cold affects them
  • they may understand the terms themselves
  • but have no idea what this means for them
  • how they might feel if they were outside without a warm raincoat
  • that it might be unpleasant
• they have no means to give you an answer
  • this should be rare – you can use any means necessary to enable a person to communicate their answer

There are 5 guiding principles (again):

• assume a person has the capacity to make a decision themselves, unless it’s proved otherwise
• wherever possible, help people to make their own decisions
• do not treat a person as lacking the capacity to make a decision just because they make an unwise decision
• if you make a decision for someone who does not have capacity, it must be in their best interests
• treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms

 assuming a person has capacity

• this should always be our starting point
• it’s the reason we ask questions and offer choices
• if a person has been unable to make a decision several times and their disability / condition / illness hasn’t changed then it’s probably fair to assume that they can’t make this decision at any time
• but it should be checked from time to time anyway

help people to make their own decisions

• goes back to how you present the information
• in a way they can best understand
  • alternative communication options
• alternative options
• give them time
  • don’t expect an immediate response
  • repeat the information
  • use multiple forms of communication
    • eg say the words, show a picture or use a sign together
  • choose a good time to address the decision
    • are they better in the morning or do they need time to get going
  • does the decision need to be made now or can it be delayed until a better time
  • is there a better place where they would feel more comfortable, eg at home rather than in school – or the other way around
  • even if the person can’t make the decision themselves they should be involved as much as possible

So, for our wet weather example we might consider:

• Offering an alternative to going out
• Agree to go out later if the weather brightens up
• Would they prefer to make the decision later – after lunch, or when they come home from school
• Present the options in the way they will best understand

best interests

if you are making the decision for your young person it must be in their best interests – not yours – sounds obvious, doesn’t it?

It can be easy to make a decision based on what you would want if you were in the young person’s situation – but this is not how you should approach decision making

• what do you think your young person would want
• based on previous experience or things they have previously expressed
• don’t assume based on their age, appearance, condition or behaviour
• ask other people – friends, carers

Using our wet and cold weather example again:

• Has the young person refused to go out in this weather before
  • Or have they not minded
  • Maybe they like the rain (or the wind!)
• Do they look happy at the prospect
  • Or are they showing signs of not being interested
• How do they react to this situation when with other people
• Are they happy to wear appropriate clothing

Other considerations might include:

• The young person needs activity to be happy
• They need regular exercise for their health
• Going out help behaviour or sleep

You will be using all this information to ensure that you are making the best decision for them

So it may be wet and cold but if all the evidence suggests the young person doesn’t mind this and they are happy to let you offer appropriate clothing then the best decision is to go out!  Or if they will sleep better or be calmer – same decision.

Least restrictive

Any decision taken on behalf of a young person must be in their best interests but also the least restrictive option.

• This means the least restrictive option for them
• Which may not be the actual least restrictive option
  • But it’s the option that everyone involved in taking the decision agrees is best for the person at this time

Consider:

• Is there another way to do this
• Does a decision need to be made at all
• If there are options are any more or less restrictive
• Does the final decision allow the original purpose of the decision to be achieved

Back to our wet and cold weather example:

• If the weather is truly awful could we not do this?
• Or do it later or tomorrow
• If we don’t go out how will behaviour or sleep be affected
• Could we go for a shorter walk and then play a lively game at home

If the original purpose of going out was to help the young person burn off energy so they will sleep well (or be calmer) then an alternative would need to consider this original purpose.

If what the young person wears could be a problem what can we do?

• It’s not reasonable to take them out and let them get soaking wet if they won’t wear a raincoat
• It may be restrictive but letting them get soaked on a cold day is probably not in their best interests as it could lead to health issues

How can we help this situation – alleviate the restriction?

• Let the young person choose their own raincoat
• Does it have to be a raincoat – maybe a poncho
• Will they use an umbrella
• Let them choose one
• Ditto wellies or other shoes
• Be prepared with alternative options before this situation arises

Another example to help think about best interests and least restrictive options is around safety.

My daughter can’t go out on her own – she can’t even leave the house safely – she could get lost, get knocked over by a car, be taken advantage of.

So, if it is in her best interests to make sure she can’t leave on her own – what are the options?

• The front door can be locked
• She could be locked in her own room
• Or restrained in some way
• She could have someone by her side all of the time – or checking on her every movement

Of these options – the one that achieves the original purpose – to keep her safe – which we all agree is in her best interests – the least restrictive is to keep the front door locked.

It’s obvious that locking her in her room or restraining her are overly restrictive.  But so is having someone by her side or monitoring her every move – this is her home, it shouldn’t feel like a prison.   (See info about DoLs further along)

 Unwise decisions

I have left this until last as it can be a tricky area

An unwise decision does not necessarily mean a person lacks capacity

Consider the basis for making the decision:

• understanding the information relevant to the decision
• retaining that information long enough to….
• use or weigh up that information as part of the process of making the decision
• communicate their decision

If all of these are true and the person still wants to make the decision there is no legal basis (unless the action intended is illegal, of course) to deny them the right to make the decision.

Making a bad decision is not the same as lacking ability to make a decision.

It’s tricky because other people – probably you – have to pick up the pieces and manage the fall out when it all goes wrong.

However, if a person repeatedly makes unwise decisions which leave them at significant risk or when they make a decision that is out of character, this should be investigated.

It is difficult to find examples of how managing a person making unwise decisions can be managed except for extreme examples.

The bottom line is that if a person is deemed to have the mental capacity to make a decision it is their decision to make.

Deprivation of Liberty Safeguard (DoLS)

Article 5 of the Human Rights Act states that:

everyone has the right to liberty and security of person. No one shall be deprived of his or her liberty [unless] in accordance with a procedure prescribed in law

The Deprivation of Liberty Safeguards (DoLS) is the procedure prescribed in law when it is necessary to deprive someone of their liberty – a resident in a care home or patient in a hospital – who lacks capacity to consent to their care and treatment in order to keep them safe from harm.

In general if a person is:

• Subject to continuous supervision and control, or
• Is not free to leave the premises

Then they are probably being deprived of their liberty

• This is a scary sounding term – and it was supposed to be renamed
• It is a framework to ensure a person’s best interests are properly represented in assessing, authorising and managing a deprivation of their liberty
• it is about giving the relevant people the authority to keep a person safe when they are unable to do that themselves

The example I just gave about my daughter not being allowed to leave her home when at residential college was subject to a DoLS.

Part of a DoLS assessment is to ensure that any restrictions are reasonable to ensure the person’s safety and wellbeing and are not excessive in any way

• ie the least restrictive option to achieve the desired outcome

Decisions that can’t be made:

There are some decisions that can’t be made on behalf of another person:

• consenting to marriage or a civil partnership
• consenting to have sexual relations
• consenting to a decree of divorce being granted on the basis of two years’ separation
• consenting to a dissolution order being made in relation to a civil partnership on the basis of two years’ separation
• consenting to a child’s being placed for adoption by an adoption agency
• consenting to the making of an adoption order
• discharging parental responsibilities in matters not relating to a child’s property,giving a consent under the Human Fertilisation and Embryology Act 1990 (c. 37)
• giving a consent under the Human Fertilisation and Embryology Act 2008

 When should a mental capacity assessment be carried out?

• When treatment or care is required and you have a reasonable belief that an individual lacks capacity
  • The more serious the decision, the more formal the assessment needs to be
• When an individual is unable to make a particular decision at a particular time because their mind or brain is affected by illness or disability
  • Lack of capacity may not be permanent, it may be short term or intermittent
• Assessments are time and decision specific

Reasonable belief

• There has to be a reasonable belief that a person can’t make the required decision at the required time because:
  • They have an impairment, or disturbance, in the functioning of the individual’s mind or brain? If so
  • And there is evidence that that impairment or disturbance is sufficient that the person lacks capacity to make a particular decision

AND

• People who know the person well / professionals notice a change in behaviour, or
• The person has previously unable to make a decision

Unable to make a particular decision at a particular time

• This may not be a permanent loss of capacity
• Capacity or lack of can be temporary
• But if the decision cannot be delayed the person could well be deemed not to have capacity for this decision at this time

Who should assess capacity?

• The person carrying out an assessment is called an Assessor
• This is not a formal title and assessors can be anyone
• Anyone caring for or supporting an individual who may lack capacity could be involved or carry out an assessment, for example
  • Family member
  • Care worker, Care service manager
  • Nurse, Doctor, Social worker
• The assessor must understand their role and responsibilities
• Health and social care professionals, not necessarily psychiatrists or psychologists
• In complex cases it would be appropriate to get a professional / specialist opinion
• But family, carers and other people who know the person well should always be involved even if they are not going to be making the decision
• Their knowledge and input are vital to good decisions being reached
• They will know the person’s wishes, feelings, values, how they might have chosen themselves when they had capacity
• But ultimately the decision maker – if not you – has to balance all the information

Professionals are expected to follow the code of practice.

• if not they will be expected to give good reasons why they have departed from it if a court or tribunal considers it to be relevant

The Act also applies more generally to everyone who looks after, or cares for, someone who lacks capacity to make particular decisions for themselves, including family carers.  Although family carers are not legally required to have regard to the Code of Practice, the guidance given in the Code will help them to understand the Act and apply it appropriately.

If you are not doing the assessment and making the decision:

Ask questions and check the process:

• Was expert help with the assessment of capacity required and asked for?
• Do the health and care staff supporting your young person have training to carry out assessments of capacity
• Health and social care services must be able to show how they carried out an assessment
• Where a major decision is to be made, details of the assessment should be written down
  • Who carried out the assessment
  • Steps taken and why
  • Support given
• If the young person has a care plan, it should set out how issues of capacity are dealt with

Bigger decisions / more complex decisions

Many of the decisions regarding a person’s capacity are around regular or day to day things that people who are close to the person are quite capable of assessing.

But what happens when the decision is bigger or more complex?

As a rule the bigger or more complex the decision the more formal it needs to be and potentially using professionals might be appropriate.

What is a bigger decision?

Very individual but likely to include things like:

• Where a person should live
• What medication they should take
• Financial matters or managing finances
• Consenting to surgery
• Undergoing minor medical procedures or therapies
• Going on holiday
• Using equipment, eg to support mobility
• Giving lasting power of attorney

So who would carry out these assessments?

It could still be you or a carer – someone who knows the person well and where there are grounds to be concerned about their ability to make these decisions.

• Document the process
• Have another person present

Why?  The bigger or more complex the decision the more potential there could be for someone to challenge it.

For example, if your young person has capacity to give you lasting power of attorney you don’t want another member of the family contesting that just when it matters.

It doesn’t have to be long or formal

A simple description of what you did, where you did it and the responses

For example

You want to have an LPA for your young person:

• We had the discussion in the kitchen where James prefers to spend his time
• We sat him down and talked about how I manage his money and that I have permission to do that
• I checked that he understood that I have permission
• He said ‘mummy looks after my money’
• I asked him whether he wanted me to continue to look after his money
• He said ‘yes’
• We talked about how he asks me for money and I give him what he needs
• I asked him if he would like me to look after other things as well and help him make decisions
• He said ‘yes’

We used simple language and asked each question at least twice

He was able to understand the information and remember it while we discussed and quite definitely agreed to me managing his money and other things for him.

Jane was present and agreed to be the certificate provider (this is specific to giving a lasting power of attorney).

If you use a solicitor for this they would want to see the young person on their own to ensure that they understood what they were doing and were not being coerced.

2^nd example: determining if a young person can make a decision about where they will live – carried out by a social worker

• I asked the questions in Jack’s bedroom as this is where he likes to spend his time. Mum helped support
• I asked Jack to point to pictures in answer to questions
• Eg which picture is the kitchen, which is the house
• Jack pointed at a different picture
• I repeated similar questions
• Jack was engaged but seemed to point at pictures randomly
• As the assessment decision maker it is my opinion that Jack could not understand the information relevant to the required decision

The assessment goes on to say that Jack was not able to relay whether he understood or not or retained the information.

As this was a social worker assessment it would have been written up in a formal report.

This could be you, the parent, but this is an example where you might want someone else to do the assessment.  It could be their doctor if they know them well enough, another therapist, someone at school.

For a medical decision it is likely that a doctor would be involved, or a therapist, nurse, etc

For social care decisions, eg where a person might live, it is likely that their social worker would be involved – and definitely if social care is funding.

The main thing is that you don’t want the decision to be contested at an inopportune time so take steps to ensure that the decision is watertight.

Remember that the decision could go either way – that the person does have capacity or that they don’t.

If a professional is involved in the assessment you should expect that they will keep more formal notes of the process.

Challenging a decision

• Speak to the person who made the decision in the first instance
• Check that the correct procedures were followed
  • eg did the assessor contact people the person knows well
  • Was the person supported
• Health and social care organisations will have a formal complaints procedure
• Healthcare settings have a Patient Advice and Liaison Service
• Keep a record of any conversations, emails, letters
• A serious dispute that cannot be resolved will have to be referred to the Court of Protection

 Other information

Just to reiterate – this is all about supporting a person who does NOT have the mental capacity to make a required decision.  Even if there is doubt about their capacity which leads to an assessment – if an assessment determines that they DO have capacity – it is their decision to make

 Appointee

• You can become a welfare benefits appointee for your young person when they turn 16
• Assessed by the DWP
• Allows you to manage their benefits
• Does not allow you to manager other finances, open bank accounts, sign tenancy agreements, etc

Lasting Power of Attorney

• The young person must have capacity to give you PoA
• If they don’t have capacity you can’t have PoA
• As long as they understand in simple terms that’s enough

Deputyship

• Avoid unless you really need one
• Financial deputyship allows you to manage all of a person’s financial affairs
• Unlikely to be granted a health deputyship
• There are duties and responsibilities involved
• The application form is over 40 pages long

If your young person has no financial assets other than their benefits you can manage that as their appointee – you probably do not need a deputyship

Resources

For more information see:

• Hft – Using the Mental Capacity Act
• uk – Mental Capacity Act Code of Practice
• Mencap – Mental Capacity Act Resource Pack
• Foundation for People with Learning Disabilities – Thinking ahead: a planning guide for families