Caring for someone with a learning disability
Most people with a learning disability were born with it or acquired it shortly after birth. They may have difficulty understanding, learning and remembering which can make it harder for them to communicate, learn new things, and sometimes to undertake physical tasks.
Family carers - parents, grandparents, siblings, aunts, uncles and friends - provide much of the care for people with learning disabilities in order to help them live independently. In many cases carers support their loved one for the rest of their life. You may have decades of experience as you negotiate the health, education and social care systems through infancy, childhood and adulthood
It is often the personal commitment of family carers which enables the person they care for to expand their horizons and live a fulfilling life.
Looking after yourself
Providing care for someone with a learning disability can be very demanding and it is important to ensure that you make time to look after your own health and emotional needs.
Carers may have to deal with anything from toileting issues to challenging behaviour, so it is helpful to understand what help is available in your local area. For more information about what services, support and advice is available, please visit the learning disability pages on the Derbyshire County Council website.
Getting peer support
Speaking to people who are facing similar challenges to you can help you make sense of things. Having a network of people who you can turn to for advice and support can be very helpful.
You can use the Carers Directory to look for carers support groups in your area. There are also details of telephone helplines and online support groups for carers on the online carers communities and advice lines information page.
Online groups particularly relevant for carers of people with learning disabilities include:
Parenting Additional Needs are a friendly and welcoming support group for parent carers in Derbyshire. The group that started in 2013 with just 3 members but now support over 100 families around the county.
Mencap also have an online community called the FamilyHub. Members connect with others caring for someone with a learning disability to offer and receive support, share tips, triumphs, information and challenges.
Short breaks for people with a learning disability
As a carer it is important to get a rest from your caring role and take time for yourself. As well as being an opportunity for the person with a learning disability, short breaks give their family carers the chance to take a break from their caring responsibilities.
Derbyshire County Council has six short break centres around the county for people with learning disabilities. You can find out how to access short breaks by speaking to your social worker or contacting Call Derbyshire on tel: 01629 533190.
The are also independent respite services that the person you care for can stay at. The Derbyshire Brokerage Service will be able to help you find one on tel: 01629 537763.
Getting help and asking questions
People with learning disabilities often have to attend many health and social care appointments and as a carer you might have a lot of questions. It may help to write down your questions before any appointments with professionals and take someone with you. The Derbyshire Healthwatch Good Health Group have developed some health appointments top tips for carers of people with a learning disability
Derbyshire Healthcare Foundation Trust have produced a card to help you think about what you want to say before you attend a meeting with a professional. It's important that you are get the answers to all your questions, so if there's anything that you are unsure of, don't be afraid to ask again.
For most learning disability conditions there are dedicated organisations which can be excellent sources of information and advice. You should also use the carers directory to find your local carer support service to see how they can support you.
You may also be able to get specialised support if you care for someone with Down's Syndrome, Attention Deficit Hyperactivity Disorder (ADHD) or Autistic Spectrum Disorders.
Coping with challenging behaviour
The Challenging Behaviour Foundation has information sheets for carers and professionals about challenging behaviour and severe learning disabilities. Find out more about challenging behaviour on the Challenging Behaviour Foundation website.
Safe Place Scheme and Community Connectors
Safe Places are public places such as libraries, shops, GP surgeries and other public buildings in Derbyshire where people with learning disabilities can go if they feel scared, threatened or are in trouble while out and about. If the person you care for is able to go out alone, the scheme may give you re-assurance that they would be able to get help if they needed it and stop you worrying about them so much.
The Community Connector service may be able to help the person you care for develop new skills and get involved with activities in their local community. If appropriate this can include travel training and the support can last up to 12 weeks. The person you care for doesn't need to have an Adult Care worker to access the service. For further information contact Call Derbyshire on tel: 01629 533190.
If the person you care for has to go into hospital it could be a worrying time for both you and them.
Derbyshire Healthcare Foundation Trust have dedicated nurses who work at local hospitals and it's their job to help people with a learning disability when they go into hospital. They will also support carers by giving information, advice and helping to plan admissions and discharges. The Trust work to Core Care Standards which explain how they work with patients and carers.
The NHS website has some helpful tips on how to help someone with a learning disability prepare for a hospital stay.
The Good Health Group's Top Tips for people with learning disabilities and their carers will also be useful during a hospital stay.
Chesterfield Royal Hospital and Derbyshire Healthcare Foundation Trust both have useful information for people with a learning disability and their carers:
Planning for the future
As you get older you may want to prepare for the future so that there are plans in place to support the person you care for when you are no longer around.
Together Matters have produced a guide for parents of children (of any age) with a learning disability. The guide is called Thinking Ahead: supporting families to plan for the future and has information about legislation, emergency planning and when your child moves away from home.
You may find that the person you care for, who has a learning disability, may start caring for you in return as you get older. This is known as mutual caring, and sometimes it is difficult to see when this is happening and to get the right support.
Learning Disability Partnership Boards
There are three learning disability partnership boards that cover Derbyshire. The boards link and engage with key local people and organisations within their area to improve the lives of people with learning disabilities by increasing their choice, independence, rights and inclusion within their own communities. The boards meet bi-monthly and have carers reps and reps who have a learning disability.
If you or the person you care for would be interested in joining your local board as a rep, please contact the Derbyshire Contact Council Stakeholder Engagement Team using their website contact form.
Some of the Board's carer reps are happy to give information and advice to other carers over the telephone. You will find their details by using the Carers Directory and searching for 'information service' as type of service and 'learning disabilities' as type of caring support.
Learning Disabilities and Constipation
Some people with a learning disability are more at risk of constipation than the general population. Reviews into the deaths of people with a learning disability have shown that too many people are dying from constipation.
The NHS have developed a leaflet to help families and carers know the signs of constipation and what to do if you think someone is constipated.
Profound and Multiple Learning Disabilities
A diagnosis of a profound and multiple learning disability (PMLD) is used when a person has more than one disability, with the most significant being a learning disability. Many people diagnosed with PMLD will also have a sensory or physical disability, complex health needs, or mental health difficulties.
Mencap have information and advice pages for carers of someone with PMLD that offer practical advice and tips.
The caring for someone with a physical disability page may have helpful information that applies to you and the person you care for.
- Top Tips for Carers of People with Learning Disabilities
- Care and Treatment Reviews (CTRs) - a family survival guide
Other helpful websites
- Derbyshire Healthcare Foundation Trust - Learning Disability Service
- Derbyshire Healthcare Foundation Trust - helping someone with a learning disability stay healthy
- Healthwatch Derbyshire - Learning Disability Information
- 'I Can' - Challenging Assumptions About Learning Disabilities video
- HFT - creative ideas, fulfilling lives
- Contact - for families with disabled children
- Derbyshire Learning Disability Partnership Boards
- Mencap - support for carers and parents