Every person with a learning disability is unique, and so your role as a carer will be unique too. What your caring role looks like will depend on the individual needs of the person you care for, and the particular support they need to maintain a good quality of life. Caring for someone with a learning disability can often be a lifelong role, and so it is important that you have access to the right information, advice and support to carry out your role as fully as you can, whilst still meeting your own needs long term.
A learning disability is a condition which affects the way someone learns new skills and processes new information. Most people are born with a learning disability, or develop a learning disability in their early years, although some people might be diagnosed much later than that. A learning disability can be classed as mild, moderate, severe or profound. Someone may have a very mild learning disability, meaning they can live independently with minimal support, whilst others may have a more severe learning disability and need full-time care. Living with a learning disability can affect someone’s ability to look after their own wellbeing, access employment, maintain relationships and live independently.
Sometimes, but not always, people with other conditions like Down's syndrome, cerebral palsy or epilepsy can also have a learning disability. The same is true of autism; sometimes people with autism may have a learning disability, but autism is not a learning disability in itself. If you are supporting someone with autism, you can find out more in our introduction to caring for someone with autism article.
Profound and multiple learning disability (PMLD) is when a person has a severe learning disability and other disabilities that significantly affect their ability to communicate and be independent. Our article on caring for someone with profound and multiple learning disability goes into much greater depth here.
If you are caring for someone with a learning disability, your role will depend on the specific needs of the person you care for, and because a learning disability is a lifelong condition, this can mean they will need support throughout. The level of support you offer can vary based on their individual condition, you might be offering minimal support so the person you care for can be as independent as possible, whilst helping them with practical tasks like organising their calendar, filling in forms, remembering specific activities, or managing their money. Alternatively, if the person you care for has a more severe or profound learning disability, you may be providing support with all aspects of their life, including personal care and support with communication and mobility.
Promoting the independence of someone with a learning disability
Promoting someone’s independence means supporting them to feel confident and empowered to make choices and direct their own lives as far as they are able. Independence will look different for every person depending on their needs and the severity of their learning disability. Some people with a learning disability can live independently with very little support, whilst others may need full-time care.
The person you care for may need practical help with daily tasks, and emotional support in connecting and communicating with others, in navigating relationships, and in finding strategies to cope in situations they might find challenging. They might need support in learning how to look after their health and overall wellbeing, and in developing the useful skills they need to stay safe and to access what they want in life. You may also be supporting the person you care for to explore the activities and experiences they enjoy, express their creativity and talents in the ways that feel best to them, and otherwise lead a rich, full life.
Creating the right living environment will be an important part of helping the person you care for to be as independent as possible. If they live with you, this might include making certain adaptations to your home, bringing in specialist equipment and accessing extra living support like paid carers or a personal assistant. Sometimes, someone with a learning disability lives independently within supported living accommodation (also known as assisted living). In this situation they would have their own home or room within a house with their own tenancy agreement, whilst still receiving the right support and care they need.
Helping someone to live safe and well at home
You might begin by having an open and honest conversation with the person you are caring for, discussing their daily challenges and identifying areas where home adaptations or specialised equipment could make a significant difference.
If adaptations to their home, specialist equipment or extra personal care to live as independently as possible is required, the person you care for is entitled to request a Care Needs Assessment from their local authority, or you can do this on their behalf. If they are eligible for support, a care plan will then be drawn up to address their particular needs.
They will also be told about any benefits they are entitled to, and they might be eligible for a Personal Health Budget (PHB) to pay for certain aspects of their care, like practical support from a personal assistant or special equipment to meet their wellbeing needs.
You can also book a free Safe and Well check with your local Fire Service. A team will come to visit, providing the person you care for with actions and advice to help make their home as safe as possible. They can also provide specialist equipment and draw up the best fire escape plan for use in case of an emergency.
Helping someone with a learning disability to communicate
Someone with a learning disability may face certain challenges when it comes to communication. They may require written materials to be presented in a clearer, simplified format, more time to process certain information, or support to communicate in certain settings. Some people with a learning disability may also be mute or non-verbal and need extra, specific support to be able to communicate their needs, wishes and ideas. Our article supporting someone with a learning disability or autism with communication goes into more depth on this.
Adjustments education providers and workplaces can make to support someone with a learning disability
If the person you care for is in education or at work, it’s important that they are able to access what they need in order to receive education or work. The Equality Act 2010 states that someone with a learning disability has the right to ‘reasonable adjustments’, recognising that some people might need additional support at work and in education to enable them to undertake their role effectively.
In practice this might mean they would be entitled to receive support at every stage, from an application process, during an interview, and whilst at school or work itself. With many employers now describing themselves as ‘disability confident’, and schools and colleges recognising the need to support their students with learning disabilities, this could include providing information in various formats, additional or one-to-one support, and making certain adaptations to their roles, assignments and workplaces.
Future Planning
Creating a communication plan for use in emergencies in collaboration with the person you care for can help everyone feel more confident and secure.You might have emergency contact numbers in an easily accessible place, or programme those numbers into their mobile phone. For times when they are out and about, you might want to encourage the person you care for to carry an ID bracelet or an ID card that communicates information about their condition and specific needs simply and discreetly. Our article on planning for emergencies as a carer is a more in-depth resource covering this important area.
Whilst it might be difficult, it is also important to consider what would happen if you were unable to provide care, either in the short or long term, or after your death. Having a conversation with the person you are caring for about their needs and desires if you were not around to support them can bring peace of mind to everyone involved.
Drawing up an advance care plan will also ensure the person you care for has a say in their future care, and regarding any support they might need when you are not there yourself. Our articles on future care planning and understanding capacity as a carer for someone with a learning disability may also be useful here.
As a carer supporting someone it is important that you acknowledge the impact this role will naturally have on you. Making time for regular breaks and longer periods of respite will ensure you have opportunities to recharge and meet your own needs. You’ll benefit from this on every level, and the person you care for will too. Our articles on accessing respite as a parent carer, and accessing respite as a carer for someone with autism or learning disability, might be useful here.
The social Care Needs Assessment is available for you to access support for the person you care for. Following an assessment, a care plan is drawn up with the specific needs of the person you care for in mind. This means they will be seen regularly to ensure they attend important appointments, like annual health checks, and they will also be connected with the most appropriate people and places tailored to their needs. This might include peer support groups, places where they can enjoy their favourite activities, or support with accessing education or employment.
Speaking to your GP and the other health professionals involved is the best place to begin as they will be able to give you information about their specific learning disability and what it might mean for the person you care for. Researching reputable sites online, and reaching out to condition-specific organisations for their insight and support, and to ask any questions you might have can be very helpful.
If you ever feel overwhelmed by the caring role, you could speak to your GP or contact your local authority to request a Carer’s Assessment at any time, and this could provide you with respite or regular breaks from your caring role, help around the house, and other tailored support to ensure your wellbeing is being prioritised too.
For more information and guidance our in-depth article on the importance of looking after yourself as a carer is full of good advice.