This is a plain language summary of the topics we talked about during our second CLARiTY Session.
In our second CLARiTY session, we talked about four topics:
- Supported decision-making
- Best interests decisions
- Do Not Attempt Resuscitation notices (also known as DNAR)
- Capacity to consent to sex and relationships
Prof Rosie Harding talked about the law that tells us how people with learning disabilities and people with additional or other impairments should be supported in making decisions about their lives. Rosie has previously conducted research on Everyday Decision-Making and Supported Will-Making. You will find reports and associated EasyRead documents on the research findings page of this website.
People with learning disabilities may need support to make some decisions. These decisions might be everyday choices like choosing what to wear or what to eat. But some decisions like consenting to medical treatment or decisions about money and investments are more complicated. The law, both national and international, recognises that disabled people may need extra help and support to make decisions. When people with learning disabilities struggle to make some decisions, the law says that they have a right to support to help them decide.
Rosie talked about two important laws: the UN Convention on the Rights of Persons with Disabilities (CRPD) and the Mental Capacity Act 2005
The UN Convention on the Rights of Persons with Disabilities
The United Nation Convention on the Rights of Persons with Disabilities (CRPD) is an international human rights treaty that sets out the rights all disabled people have. The UK signed up to the CRPD in 2009. This means that the UK has agreed to safeguard the rights in the CRPD. Article 12 of the CRPD states that ‘State Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life’.
Legal capacity is the formal ability to hold and exercise rights and duties. Everyone has a right to legal capacity. Some disabled people need support to be able to enjoy legal capacity on equal basis as non-disabled people. As well as being supported to make decisions, disabled people have a right to be protected from abuse when making choices. You can find a more comprehensive explanation of legal capacity written by Rosie on our Blog. There is also an infographic about legal capacity.
There is an easyread version of the UN CRPD that you can download from here: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/345108/easy-read-un-convention.pdf
The Mental Capacity Act 2005
The Mental Capacity Act 2005 is a law that applies in England and Wales. The Mental Capacity Act is the law that says who can make decisions about their own life, and who else can make decisions about a person’s life if that person can’t choose for themselves.
The Mental Capacity Act applies to people age 16 and over who live in England and Wales and who find it difficult to make some or all decisions because they have an impairment that affects their mind or brain.
The Mental Capacity Act also allows people aged 18 and over to plan for who they would like to make decisions for them if they lose the ability to make them, or to make some decisions in advance. We’re going to talk about those tools in session 3 of the CLARiTY project. You can register for that session here: https://www.eventbrite.co.uk/e/clarity-session-3-lasting-power-of-attorney-and-deputyship-tickets-132248190899
Everything in the Mental Capacity Act is based on 5 principles.
- Presumption of capacity
- Supported decision-making
- Unwise decisions
- Best interests
- Least restrictive option
Principle 1: Presumption of Capacity
The first principle of the Act is called the ‘presumption of capacity’. This means that we always need to assume that everyone has capacity to decide for themselves, unless it is proved that they cannot.
This is important because it means that disabled people do not need to prove that they have capacity to make a decision. It is up to the person who thinks that a disabled person lacks capacity to make a particular decision to prove that the disabled person lacks capacity. To prove that a disabled person lacks capacity, the person would have assess their capacity, using the test set out in the Mental Capacity Act.
The capacity test in the Mental Capacity Act is set out in s. 3 of the Act. To prove that a person lacks capacity, it needs to be shown that the person is unable to:
- understand the information relevant to the decision;
- retain that information for long enough to make the decision;
- use the information as part of making the decision; or
- communicate their decision.
In law, capacity is “decision-specific”. This means that a person might be able to make some decisions without support, others with some support, and there may be some other decisions that they can’t make, even with lots of support. If a person can’t make their own decision, then someone else will have to make a decision for them, and in their best interests. There is more information about best interests later on this page.
39 Essex Street Chambers have published a helpful guide on mental capacity assessments.
Principle 2: Supported Decision-Making
At the session, we focused on supported decision-making in more detail. Supported decision-making is required by the Mental Capacity Act and the UN CRPD. Both laws require that learning disabled people are given the same chance as others to make their own decisions. This means that people need to be helped and supported in making decisions. We must not assume that when person struggles to make a decision that this should be an automatic ground for someone else to make decisions on their behalf.
In the Everyday Decisions research with disabled people and care professionals, Rosie found that there are many ways to support peoples’ decision-making. Some examples are quite simple like using pictures or easy read material or talking through the issue. Rosie has also found that some support may take a more complex form like helping someone draw up a list of good and bad things about decisions or using tools like talking mats or technology like eyegaze. The support that is offered must be specific to the needs of a disabled person and need to be relevant to the specific decision in question.
Rosie talked about different kinds of support needed for people to make decisions. These may include:
- Communication. Effective communication might require taking time to discuss relevant information; repeating the information or repeating the information in a different way to ensure understanding; making information simpler and using multi-sensory methods.
- Advocacy and self-advocacy. Advocacy and self-advocacy are about helping disabled people to express their views, building decision-making skills, generating relationships and peer network. The Everyday Decisions research found that disabled people really value their self-advocacy and people-first groups.
- Community engagement Being part of a community is important for everyone. Things like community arts activities, disability sports, working (whether that’s voluntary work or paid work) and going to college all help disabled people to build life skills, including about making decisions, and to develop friendships, relationships and peer networks.
You can find out more about the Everyday Decisions research on the research findings page of this website. There is also an easy read version of our project report.
Principle 3: Unwise Decisions
The third principle of the Mental Capacity Act is that people cannot be treated as lacking capacity only because the decision they are making may appear unwise to others. Everybody makes ‘unwise’ decisions sometimes. Making unwise decisions, and learning from mistakes can be a good way to get better at making decisions in the future.
The Mental Capacity Act is accompanied by a Code of Practice. The Code of Practice was published when the Act came into force in 2007. It is currently being revised, and we expect a consultation on the revised Code of Practice to be published in spring 2021. We hope that the new Code of Practice will give more information about supported decision-making. Rosie has helped with re-writing some parts of the Code of Practice, drawing on her research into disabled people’s experiences.
Links for more information:
- UN CRPD: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html
- EasyRead CRPD: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/345108/easy-read-un-convention.pdf
- Mental Capacity Act: https://www.legislation.gov.uk/ukpga/2005/9/contents
- Mental Capacity Act Code of Practice: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
- EasyRead MCA: http://www.careengland.org.uk/sites/careengland/files/Mental%20Capacity%20Act%202005%20easy%20read%20guide.pdf
- Everyday Decisions Research Findings (including easyread versions): https://www.legalcapacity.org.uk/research-findings/
Sophie O’Connell from Wolferstans Solicitors talked about principles four and five of the Mental Capacity Act. Principle four requires that if a person is unable to make their own decision, then any decisions that are made for them must be in their ‘best interests’. Principle 5 is that any ‘best interests’ decision that is made must be the option that is least restrictive of the person’s rights and freedoms.
‘Best interests’ decisions
It is really important to remember that best interests decisions can only be made if all possible support has been given to the person who the decision is about, and they still can’t decide for themselves. Section 4 of the Mental Capacity Act 2005 [link] sets out the steps that a best interest decision maker must take in order to work out what is in the best interest of the person concerned. The law does not say what is in the best interest of a person, because the best interests test is about what is best for each individual person, so it will be different for different people.
The best interests decision-maker is the person who is responsible for carrying out the decision but they are not the sole decision-maker. There is a list of people in the Mental Capacity Act who have to be consulted about best interests decisions. Most importantly, the best interests decision-maker needs to make decisions from the point of view of the person who lacks capacity. This relates to the well-known principle: ‘nothing about me, without me’.
It is possible that two different people (for example, a family member and a professional) might carefully follow all the steps and come to a different decision. This does not mean they are each wrong, but they should work out together why they came to a different view, including what information they have used. Sometimes, when people don’t agree what is in a person’s best interests, they might have to ask the Court of Protection to decide what to do.
Who is the best interests decision maker?
The best interests decision maker is the person who is responsible for carrying out the decision. Some best interests decisions might be made by family carers. For other decisions, the decision-maker is a professional, so the doctor treating the person is often the decision-maker for medical treatment decisions. For local authority funded care decisions, it might be the social worker.
If someone has a Lasting Power of Attorney for health and welfare matters or financial matters, they will be responsible for making best interests decision on issues that are covered by their LPA. If there is a court-appointed Deputy to make relevant decision, then they will be the decision-maker for issues they have the power to make decisions about. But Attorneys and Deputies also have to follow the best interests steps. Our next CLARiTY 3 session, on 13th January will cover Lasting Powers of Attorney and Deputyship in more detail.
Sophie noted that there is often a misunderstanding that the next of kin would be the decision maker when a person lacks capacity. Under the law, the next of kin does not have this kind of power, but they do usually need to be consulted when best interests decisions are taking place. Next of kin means a point of contact rather than a decision-maker.
Best interests decision – steps
The law says that the process of making best interests decision needs to be as collaborative as possible. Everyone needs to work together.
Step 1 is to offer support to the person this decision is about for them to make the decision independently. If the person has been properly supported and is still unable to make the decision themself the next step is to find out what their past and present wishes, feelings, beliefs and preferences are, along with anything that they would want considered for the decision.
Step 2 is to speak to relevant groups of people such as family and friends (where practical and appropriate) about the decision. The first category of people to consult is anyone the person named as someone the disabled person wants you to speak to, and any attorneys or deputies. Sometimes all of these people will need to be consulted because they know the person best, and can give important information about the disabled person’s likes, dislikes, values and beliefs.
Step 3 is that you must avoid discrimination when making best interests decision. Sophie gave the following example: a best interest decision-maker cannot say you have a learning disability so you cannot take any risks. That would be discriminating against a person because of their learning disability. That is not allowed.
Step 4 is that you must choose the least restrictive option when making best interests decision. This means that the person responsible for the decision needs to think about why they are deciding something and why they are doing it, and consider how they could do it differently. You should consider an option that allows the person to remain as independent as possible rather than one that is more restrictive.
What to do if you disagree with the best interest decision
The law states that the decision maker must ‘reasonably believe’ that they are acting in person’s best interest, otherwise they would not be protected by the law. If a family carer disagrees with the decision, Sophie suggested the following:
- Check that all the steps have been followed correctly, question whether the disabled person would make a different decision if they had capacity. Ask questions to find out how the person was supported and how their capacity was assessed.
- Speak to decision maker. You may wish to take an advocate with you.
- You can speak to a solicitor.
- Speak to the Ombudsman if speaking to the decision-maker didn’t help. The Ombudsman cannot change the decision but can make sure the correct process if followed.
- If you cannot resolve what is in the person’s best interests you will need to make an application to the Court of Protection to decide.
The ombudsman is someone who has been appointed to look into complaints about organisations and services. This includes health services, social services, local authorities and any other public services. It is an independent, free and impartial services. You can contact the ombudsman after you have spoken to the relevant best interest decision maker and you are still unhappy or feel the situation has not been resolved appropriately. You can usually contact the ombudsman by filling in an online form or you can call them. They are a user-friendly organisation and will talk you through the process and answer any questions you may have.
Parliamentary and Health Service Ombudsman: https://ombudsman.org.uk
Local Government and Social Care Ombudsman: https://www.lgo.org.uk
Making bests interest decision about COVID-19 Vaccinations
At the session someone asked about making a best interests decision about COVID-19 vaccination. In doing so, you should follow all the steps outlined by the law about and weight the risks versus benefits of someone having the vaccine. Risks associated with having the vaccine have to be weighed against the risks of not having the vaccine, including the risks of catching COVID-19, and the risks associated with prolonged isolation to avoid the virus.
We did not have time to discuss this issue in detail at the session. As lawyers, we are not best placed to talk about the medical aspects of the balance of risk relating to vaccination. We have collated some links to help you to learn more about making best interests decisions about COVID-19 vaccination.
There is guidance about best interest decisions about COVID-19 on the government website here: https://www.gov.uk/government/publications/coronavirus-covid-19-looking-after-people-who-lack-mental-capacity/the-mental-capacity-act-2005-mca-and-deprivation-of-liberty-safeguards-dols-during-the-coronavirus-covid-19-pandemic-additional-guidancea
39 Essex Street have produced some legal guidance about making best interests decisions about COVID-19 vaccination: https://www.39essex.com/rapid-response-guidance-note-vaccination-and-mental-capacity/
There are slides about this issue from a National Mental Capacity Forum Webinar here: https://autonomy.essex.ac.uk/wp-content/uploads/2020/12/NMCF-Webinar-6-18.12.20.pdf
Here is a link to an ‘ask the expert’ webinar on COVID-19 vaccinations: https://www.youtube.com/watch?v=RFucRBhp9DU&feature=youtu.be
Do Not Attempt to Resuscitate Notices (DNARs)
In this session Chris, who has a learning disability, talked about his experience of supported decision-making. Chris shared a story about being supported to think about and agree to a DNAR notice for his mum.
DNAR notices are part of a care plan to allow people to state their views about what intervention they would like if they suffer cardiac or respiratory arrest, which would include not attempting resuscitation. If someone lacks capacity, a DNAR may be drawn up following an appropriate best interests assessment by a doctor who has consulted relevant family and friends about it. There is an explicit obligation to consult family and friends about DNARs and ensure they have every opportunity to participate in the decision-making process so that they can express their views about that particular DNAR notice. Just like other best interests decisions, family members and friends cannot veto the decision – the decision-maker is usually the doctor. If the doctor believes that the DNAR should be in place despite consulted individual(s) disagreeing and the conflict cannot be resolved then the Court of Protection might need to decide.
When a person who has learning disability is consulted about a DNAR for their loved ones, the doctor must ensure that they are communicating effectively. This might include giving the information in different formats like EasyRead or talking through the situation in a more accessible way. The doctor might need to repeat the information to ensure full understanding of the person who is being consulted.
In the early weeks of the Coronavirus pandemic, there were reports of blanket DNAR decisions being made for all of the residents in some care homes, without consulting anyone. Blanket decisions like these are against the law.
There is a helpful EasyRead information on DNAR notices from Learning Disability England: https://www.learningdisabilityengland.org.uk/news/dnar-a-guide-for-understanding-your-rights-and-challenging-decisions/
Information about DNAR from the Compassion in Dying Charity: https://compassionindying.org.uk/making-decisions-and-planning-your-care/planning-ahead/dnar-forms/common-questions-dnar-cpr/
Here’s guidance on DNAR from the Resuscitation Council: https://www.resus.org.uk/library/publications/publication-decisions-relating-cardiopulmonary
Capacity to consent to sex
Joanne, our second learning disabled speaker, talked about her experiences of a lack of support for having a relationship, and misunderstandings around the test for capacity to sex.
Sometimes a capacity assessment might be needed to find out if a person with a learning disability has the capacity to consent to sex. There has been lots of case law in which the Court of Protection has tried to provide guidance to health and social care professionals about assessing someone’s capacity to consent to sex.
Like all decisions in the Mental Capacity Act, capacity to make the decision means:
- Understanding the information relevant to the decision
- Retaining the information long enough to make a decision
- Using or weighing that information to make a decision
- Communicating your decision
The information relevant to the decision to consent to sex has been set out in case law, and can include understanding:
- The sexual nature and character of the activity (including what sex involves);
- That there are health risks involved, particularly sexually transmitted infections, and that using a condom can help protect you;
- That sex between a man and a woman can lead to pregnancy;
- That sex is a choice and you can say no;
- That the other person must have capacity and must consent.
Consenting to sex is one of the decisions that cannot be made as a best interests decision. If a person is found to lack capacity to consent to sex, then it is a criminal offence to have sexual relations with them. Other decisions that can never be made as best interests decisions include: getting married, getting divorced, consenting to a child being placed for adoption or the making of an adoption order.
Further Resources on capacity to consent to sex:
Mencap have made a list of resources about sex and relationships: https://www.mencap.org.uk/advice-and-support/relationships-and-sex/sexuality-and-relationships-faqs
Change have a set of books about sex and relationships that you can buy: https://www.changepeople.org/shop/products
Books Beyond Words have a set of books about relationships: https://booksbeyondwords.co.uk/book-sets/relationships-mini-set
The Supported Loving page on the Choice Support website has links to lots of resources about relationships and sex: https://www.choicesupport.org.uk/about-us/what-we-do/supported-loving