Features

The power of support

08 March 2019

Thousands of children around the UK have a learning disability, but what exactly does this mean for them and their families, and how can you help? Journalist John Windell reports.

Disability Shutterstock

Around 1.4 million people in the UK have a learning disability; just over 347,000 of them are children aged up to 17 (Office for National Statistics (ONS), 2017; Public Health England (PHE), 2016). Overall, around 2.5% of children in the UK have a learning disability (ONS, 2017; PHE, 2016).

That’s a sizeable proportion of the nation’s youth, yet young people with a learning disability can face discrimination at school, illegal exclusion and a general lack of support, warns Mencap, the leading charity for people with a learning disability. Young people can also struggle with friendships and socialising, and as they get older encounter problems with work, money and independence.  

 

A closer look

What exactly is a learning disability and how does it differ from a learning difficulty? Mencap says that a learning disability is characterised by a reduced intellectual ability.

Ranjan Sen, the organisation’s strategic development manager, explains: ‘The key thing is that a learning disability is something that is permanent and leaves people with everyday difficulties: for example, with their social skills, household duties or managing money. They need varying levels of support depending on whether they have a mild, moderate or profound learning disability.’

Mark Gallagher, a learning disability nurse and lecturer at Glasgow Caledonian University, echoes this. ‘A learning disability is a distinct thing,’ he says. ‘We use the definition from the Scottish Government, which itself is based on the WHO definition. It says a learning disability is a lifelong condition that has started before adulthood. It also has an IQ element, and it is generally somebody whose IQ is below 70. Additional features include difficulty understanding new information, learning skills and coping independently.’

Learning disabilities are also associated with a range of conditions that have their own physical and emotional issues, including Down’s syndrome, Williams syndrome, autism and Asperger’s, cerebral palsy and global development delay. Many children will have more than a single diagnosis.

In contrast, learning difficulties, such as dyslexia or dyscalculia, though they may also be permanent, won’t affect a person’s intellectual abilities. A learning difficulty might also take more time to become apparent, often only after a child has already been at school for a few years. ‘A child with a severe or profound learning disability would be apparent from a young age,’ says Mark. ‘There is also an association with low birthweight and premature babies.’

 

The impact

Most cases of learning disability divide into four broad categories, says Mark. He explains: ‘Some people can function well with a learning disability. They will grow up and develop their fundamental skills and be able to cope in their home with just a little extra help.

‘Then we have people who have a more moderate disability, who have issues with their IQ and ability to care for themselves. Then we move on to severe and even profound learning disabilities [which, by definition, are rarer]. These are people who tend to have a lot of additional physical and mental health needs. In some cases it’s 24/7 care. The same applies to young children, depending on where they sit on that spectrum. A mild disability might not become evident until a child is at nursery age, when it’s noticed they are missing their normal milestones.’

The early signs of learning disability in children tend to manifest in challenging behaviour, says Ranjan. ‘It will be issues around sleep, feeding, biting, toilet training, a whole range of things. When you look at how it presents in very young children, you will see issues around communicating with parents and not settling.’

Mark says that communication is a central issue for anybody with a learning disability. ‘We tend to find that communication can be delayed, or never even achieved. Some children simply can’t talk. Communication is a two-way process, so they can also have trouble with the way they receive information. A common factor for children with learning disabilities is that they have a lot of additional needs that remain hidden and might not get picked up until they start mixing with their peers.’

These additional issues often centre around their mental health, says Ranjan. ‘When you look at the statistics, you see that one in seven children with mental health issues also has a learning disability. But if you were to mine those figures a bit more, I think you would find a larger proportion of those children have learning disabilities. If from a very young age you have challenges around communication, how to feed and how to go to the toilet, this can make you very unhappy.’


The future of care?

In Northern Ireland, the Mencap Children’s Centre, working in partnership with the Belfast Health and Social Care Trust, is blazing a new trail for helping children with learning disabilities. ‘We provide direct support to children and have also grown this model to include families,’ says Mencap’s Ranjan Sen. The centre assesses children, gives each one a keyworker and devises an appropriate curriculum for them. ‘In the coming weeks, commissioners from all four nations will be visiting the centre to look at how it provides care for these children. In England and Wales, we are starting to look at how we can work with local authorities to implement a similar framework of care.’


 

A family issue

Behavioural and health problems affect not just children with learning disabilities, but also their families. ‘Research confirms it can have a huge impact on parents, their physical health and emotional health, their social mobility,’ says Mark. ‘It is linked to isolation, break-ups and divorce. It can also have a strong impact on siblings as they are often pulled into the role of informal carer. On the other hand, some families are resilient and work happily as a unit. It depends very much on individuals and the support network around them.’

‘The wider family unit can also suffer because the system and infrastructures aren’t necessarily accessible’

Some families even find themselves poorer. ‘I have spoken to families where one of the parents has had to give up work to take on caring duties, and that has had an obvious impact on their income,’ says Ranjan. ‘The wider family unit can also suffer because the system and infrastructures aren’t necessarily accessible or even in place to provide wraparound support.’

As with many other services, the care for learning disabilities available around the UK can vary. Mencap operates across all four UK countries, working with local authorities, health boards and third-sector groups, and has found that the support available to children and families depends heavily on local and regional factors. In Scotland, the structures are a little more formal than the rest of the UK, but it can still be variable, though third-sector bodies such as ARC and Enable Scotland are active in supporting families, children and young people. Scotland also has its ‘Named Person’ scheme, introduced in 2017, where every child is paired with a professional adult, often a teacher or health visitor. For children with learning disabilities and their families, this can be another way of getting direct support and being pointed towards relevant services.

‘A big challenge is how to make the support for families less like pot luck’

‘One thing we learnt from talking to families and local authorities is that when things start to improve for a family or child, it is very much because a particular practitioner has taken an interest,’ says Ranjan. ‘It might be a SENCO [special educational needs coordinator], a family support worker, a learning disability nurse or a health visitor. That person starts helping the family to navigate the system.’ A big challenge for the care system is how to make the support for families less like pot luck and to find a way to ensure every family has a designated practitioner who can provide appropriate care and point them in the right direction for further health, social or educational support.

What can health visitors best do to help? ‘Our main recommendation is just to speak to families,’ says Ranjan. ‘Take the time to listen and engage, to understand their circumstances and what support they need. All families and children are different. It is also about listening to any concerns a parent or carer might have about a young child’s behaviour or development and recognising the signs. Quite often you are the first person they will speak with, and then it is about knowing where in the local system they access more help and guidance.’

 

Infographic Children in the UK with a learning disability
Independent lives

Mark agrees that partnering with families is paramount. ‘It’s about working with the family unit, and respecting everybody’s wishes. Support can be patchy, but try to get them connected to whatever is available. It also helps to understand that a lot of behaviour is a form of communication, so a child might be frustrated or scared because they 
can’t communicate that, say, they have a sore tummy.’

The bottom line for Mencap is that the earlier professionals can intervene to help families deal with the challenging behaviour that can come with a learning disability, the better the chance of preventing them from becoming bigger issues later on. They also state that with the right support, most people with a learning disability in the UK can lead independent lives.

For Mark, it’s the simple belief that while a learning disability is for life, many of these children and young people are still capable of learning and developing new skills. 


 

Resources

 

Image credit | Shutterstock


 

References

Mencap. (2019) How common is learning disability? See: https://www.mencap.org.uk/learning-disability-explained/research-and-statistics/how-common-learning-disability (accessed 22 February 2019).

Office for National Statistics. (2017) Population estimates for UK, England and Wales, Scotland and Northern Ireland. See: https://www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/datasets/populationestimatesforukenglandandwalesscotlandandnorthernireland (accessed 20 February 2019).

Public Health England. (2016) People with learning disabilities in England 2015. See: https://www.gov.uk/government/publications/people-with-learning-disabilities-in-england-2015 (accessed 20 February 2019).

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