A learning disability or autism can affect a person’s capacity or ability to make informed decisions. If you are a carer of someone with a learning disability or autism, they may rely on you or others to make certain decisions on their behalf. Understanding capacity is important to ensure the person you care for feels heard and understood, and their rights and wellbeing are upheld.
Here we explore what capacity means, how it affects someone with a learning disability or autism, and how you might make decisions on behalf of the person you care for if their capacity is limited.
Capacity is the ability to understand information, make informed decisions and communicate your own choices. Someone who is able to do this is described as ‘having capacity’, and someone who is not able do this is described as ‘lacking capacity’. Somebody may temporarily lack capacity due to illness, a mental health issue, or stress. Lack of capacity is not a fixed state and can vary according to the particular decision having to be made.
Someone might have capacity to make informed decisions regarding some topics, like the clothes they wear, but lack capacity to make other decisions, like choices around medical procedures for example. This means that capacity is assessed for every decision.
The Mental Capacity Act 2005 applies to everyone aged 16 and over. It states that someone can be said to have capacity if they understand information relevant to a decision, can remember the information long enough to make an informed decision, can evaluate or weigh up options when making a decision, and communicate their choices for a decision.If it can be proven that someone does not have capacity, then a decision must be made in a person’s ‘best interests’.
If you care for someone with a learning disability, you might be the person acting in their ‘best interests’ and making a decision as their carer, or their health team or other professionals might do this in partnership with you.
Someone with a learning disability or autism may need additional support in order to make decisions
There are some practical steps you can take to ensure the person you care for has all the support they need to make an informed decision. You could make sure they have the information they need presented in a way that is most accessible for them, like a large font, easy-read or audio/visual format. Ensuring any professionals involved are aware of how the person you care for communicates best will also support the whole process to unfold as smoothly as possible.
You might advocate on behalf of the person you care for by suggesting a familiar location or a time which helps them feel more at ease and asking that any rooms be set up in a way that best supports their relaxation and comfort. Support from you or another family member or friend they trust during the decision-making process can also help the person you care for feel more relaxed and confident. This can help them avoid feeling overwhelmed, and so feel able to process information and communicate their wishes more easily. Also you could suggest that the person you care for has the time they need or the option to return to the decision on another day if that feels best for them.
There are different types of decisions the person you care for may need to make that might require their capacity be taken into consideration. These might be decisions relating to their health and welfare, like consenting to examinations or giving their permission for certain tests. These might be decisions relating to their finances or property, like buying a home, using their bank account, or how they want to receive their Personal Independent Payment (PIP) or other benefits. These might also include ‘advance decisions’. These are instructions about any future medical and healthcare treatment the person you care for might want or not want, made in case they lose the capacity to make those decisions later on.
Legal procedures to support carers in making decisions on someone else’s behalf
As a carer of someone with a learning disability or autism, your role may have begun when the person you care for was under 18, and you may have already made many decisions on their behalf.
When the person you care for transitions into adulthood, you will not automatically be able to continue to do this, so you may need to consider what choices the person you care for has the capacity to make, and what decisions they may need support with now they are over 18.
Lasting Power of Attorney (LPA) means the person you care for can appoint you as their carer to make important decisions with them or on their behalf.
If the person you care for is said to lack capacity, as their carer you can apply to the Court of Protection to become a ‘Deputy’ through Gov.uk, to be able to make decisions relating to certain aspects of their lives on their behalf. There are two different types of Deputyship, one responsible for property and financial affairs, and the other responsible for personal welfare. There is a cost involved in applying to become a Deputy, and an annual fee; depending on your financial situation, you may be able to receive support with this.
Another way you can support the person you care for is if they have a Care and Support Plan. Under the Care Act 2014, the local authority must involve you as their carer as part of any planning process. This is particularly important if the person you care for lacks capacity, when you can be recognised by the local authority as ‘an individual interested in their welfare’ and means you will receive a final copy of any care plan that is produced.
Other ways carers can support someone with limited capacity due to their learning disability or autism
If you are a carer of someone with a learning disability or autism and they have limited capacity, sometimes your role may include advocating for them, speaking up on their behalf to ensure their views are represented and their best interests are taken into consideration.
Being able to advocate for them and communicate what you want to say in formal situations can seem daunting to many carers. Our self-advocacy toolkit can be a great support, helping you to feel more confident, and you can find that here.
As part of their day-to-day life, ensuring that the person you care for is involved in any decision-making to the greatest extent possible will be an important part of promoting their independence. This will include making sure the person you care for has access to the relevant information they need to make informed choices and has the opportunity to express their preferences and opinions in any decisions relating to them. This may involve advance care planning, and supporting the person you care for to make decisions now about the care they would want in the future.
Accessing Advocacy Services
If you ever feel overwhelmed or confused by a particular issue when you are acting as an advocate for the person you care for, you may feel that more specialist support is required and be more confident working with an independent advocate.
Advocates can be experts in different areas, so doing your research to find the best person for your individual situation will be key. You can contact social care services through your local council and ask about advocacy services, or search online for advocacy services in your area.