Developmental Language Disorder - The voice of the children and young people


by Shelley Parkin – Speech and Language Therapist
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On 28th April 2018, NAPLIC (Professionals Supporting Communication and Language Development) held its annual conference in Birmingham, drawing a host of speech and language therapists and other professionals working with children and young people to its talks focusing on Developmental Language Disorder (DLD). 

New for NAPLIC this year was the opportunity for those professionals to hear first-hand the specific experiences of a group of young people with DLD, including the challenges they continue to face and the wonderful achievements they’ve made. These young people were extraordinarily brave in facing a room of over 250 adults and describing their experiences - despite the extra challenge this poses for them. Many of the adults in that room would have balked at the idea of doing something similar! 

One of the key messages that came through from their words was the need for others to know how difficult formal education could be for them, and how important it is to give them that bit of extra support. It may sound simple enough, but their experiences show that we still have a long way to go before universal accessibility to learning becomes embedded across education providers. The young people who spoke at NAPLIC were fortunate enough to have had access to either specialist education or speech and language therapy support at various points. They spoke very positively about the support they had received and its impact on their ability to engage with education. 

There is a breadth of research highlighting the myriad communication challenges young people with DLD face compared with their typically developing peer group. More recent research has looked at life beyond primary and secondary school for young people with DLD. Young people with DLD typically gain lower academic and vocational qualifications than their peers, with a greater number in non-professional occupations (Conti-Ramsden et al, 2017). Speech, language and communication needs (SLCN) are often lifelong impairments and constitute a risk of impaired social adaptation and mental health difficulties in later adolescence and adult life (Clegg et al, 2005). 

As education professionals, we are of course supporting these individuals to access education every day - whether that’s by providing direct support in the classroom, providing access to pastoral support, or facilitating access to support from other agencies - the list will be long and varied. Some children with DLD will have an Education and Health Care Plan (EHCP), which outlines the support they need and the support they will receive to meet that need. Part of the EHCP draws on the views of the individual’s parents, and the views of the individual themselves. This is a very important part of the plan, and an opportunity for individuals to speak up for themselves and their needs. Unfortunately, not all young people with DLD will have an EHCP, so we must ensure we are still providing regular opportunities for them to communicate their views. 

Thinking back to that conference room at NAPLIC, where 250 speech and language therapists listened intently to the stories and views of a group of young people with DLD, we must all ask ourselves the following question: How often do we really ask our young people to tell us what it’s like for them, and ask them what they would like us to do? Can we improve on the level of input we currently seek from them? It reminds us of the importance of ‘person-centred’ approaches to therapy planning and classroom support. A person-centred approach allows the individual to guide intervention in line with what matters most to them, rather than the ‘expert’ making decisions for them. 

The importance of seeking the views of the individual was core to the Bercow 10 Years On review of speech and language therapy services in March this year. Children and Young People (CYP) were asked four main questions:

  1. Who helps them with talking and understanding?
  2. What types of support they like and don’t like?
  3. How involved are they in making decisions about their support?
  4. How does that support make them feel? 

Most CYP reported that the most support they received was from parents and teachers. Some other individuals were also identified however parents and teachers were most commonly cited. The table below summarises the most important types of support highlighted by these CYP: 

  1. Be good at explaining 
  2. Encourage us 
  3.  Make it easy to ask questions 
  4.  Make things fun 
  5.  Be patient 
  6.  Use pictures/visual support/symbols 
  7.  Check we understand 
  8.  Give choices 
  9.  Give time to talk 
  10.  Don’t speak too fast 
  11.  Give help with work 

Bercow 10 Years On (2018) – Evidence from Children and Young People with SLCN 

When it came to explaining what they didn’t like, answers fell into the following themes: 

  1. Teacher talk/Teachers shouting/shouting if we don’t understand  
  2. People talking too much/people being noisy  
  3. Working in silence  
  4. Lots of writing  
  5. Teachers spending time on naughty children  

Bercow 10 Years On (2018) – Evidence from Children and Young People with SLCN 

In this group of CYP, just over half of primary school children felt they were involved in decision-making around the support they get, while in secondary school, this figure rose to 77%. The examples they provided tended to be a parent or teacher asking them if they needed help, rather than seeking their views on what type of help they needed. Children and young people can sometimes find it difficult to identify the type of support they need, which is why it’s important for adults working with them to offer choices. Being offered choices was highlighted as particularly important by secondary-aged pupils. 

When asked how receiving this support made them feel, the responses were predominantly positive, particularly from primary-aged children. Responses from secondary-aged pupils were more varied, with just over half reporting feeling happy or good. 

Overall, CYP were interested in the consultation process, and that their views were being heard. The more we ask children and young people their views on their care and support, the more likely they are to communicate those to us. 

When the group of young people who spoke at NAPLIC were asked ‘What helps you?’ answers focused on five key themes: 

  1. Taking time to think 
  2. Asking for help 
  3. Staying positive 
  4. Having a say in what help we get 
  5. Being given choices 

In discussing the future, again choice was a key theme. Attending university was important to one particular student, but accessing the appropriate support was vital to his success. When going through a challenging time at university, he needed to know what choices were open to him - for example, were there courses available with a more practical element, with a less intense focus on language? Being offered support and encouragement was invaluable, but so was being given time to discuss what was important to him, and to provide him with choices. DLD should not act as a barrier to any individual’s choices when it comes to learning.   

Employment can be another challenge - language disorder is often a hidden disability, and employers may not be aware of how to spot it, or how they can provide appropriate support. Raising awareness of language disorders and showing people how to help remains high on the agenda of many professionals working in SLCN. 

A recent survey of employers was carried out by the ICAN charity. It asked employers to rate which skills were most important in their young employees. From a selection of 12 skills including ‘remembering instructions’, ‘explains things clearly’, ‘knows words used at work’, etc, the skill rated most important by employers was ‘checks when confused’. This can be a challenge for young people with DLD, some of whom may prefer to ‘fly under the radar’ rather than acknowledge when they haven’t understood and ask for help. This survey result may come as a surprise to some, but it does illustrate that many employers are happy to clarify information if they are asked. Young people must feel able to safely communicate their challenges and need for support, whether that means building the confidence to do so, being given the opportunity to make their voice heard, or both. 

Being able to have our say and to make our own choices are freedoms we value as adults. As professionals working with children and young people with SLCN, we must ensure we are giving them regular opportunities to get involved with decision-making. For younger children, this means involving parents as much as possible, but also finding creative ways to involve those children too. This may be as simple as using pictures and finding out what they like and don’t like. We should expect to see the young person’s involvement in decision-making around their care to increase as they get older. Opening up that dialogue should start early on and be a constant part of the support process. The more often we do it, the more young people will expect to have their voices heard. 

 

Do you want to learn more about DLD and SLCN? Find out more in our blogs and in The Link magazine.

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