29 March 2022
With the launch of the SEND Review today, I CAN spoke to mum Roisin and daughter Ellen about Ellen’s experience of the education system as someone with Developmental Language Disorder (DLD). Children and young people with DLD have problems understanding and/or using spoken language.
Around two children in every class of 30 will have DLD. Yet it is widely under-recognised and misunderstood. We believe that reforms to the SEND system must include increased awareness and understanding of DLD, so that no child or young person is left behind. Ellen’s story below makes clear just how important a greater understanding of DLD across education and health services.
“What a difference a year makes. Ellen was diagnosed with selective mutism in the summer of 2021 and returning to college post Covid was a real struggle. Despite all her campaigning about raising awareness of DLD, Ellen’s lived experience is one of isolation, frustration, loneliness and constantly being let down. This became too much for Ellen and unfortunately in November, Ellen left college. Despite her having an Education, Health and Care Plan (EHCP), attending countless meetings and emergency reviews Ellen is currently not in education, employment or training (NEET) and left in limbo. Her world is her bedroom. Socially, Ellen is isolated, and her hard earned voice is no longer heard.
Ellen straddles two worlds and in doing so slips between the cracks and is invisible. She is now 17 and having achieved 5 GCSEs including English and Maths is no longer afforded the protection and care she received during high school and no longer a priority for education. Post 16, you cannot access a mainstream college course mid-term, so Ellen remains at home. Health wise, Ellen is too old for children’s services but too young for adult services, another reason for her being left behind. CAMHS is under great strain post Covid but for a young person with DLD and selective mutism, this is further compounded as the standard treatment is talking therapy - how do you access this support when communication is your struggle?
The big issue is we just seem to be left and passed from pillar to post. Ellen has had an early help plan, professionals meeting, emergency reviews; we attended mediation and court and won and still we are just left. Ellen has spoken to her paediatrician, 2 CAMHS specialists, two2 psychotherapists, an educational psychologist, Talking Matters, Sefton Early Help, her GP, SALT, college counsellor, caseworker and the judge. Each time she has to retell her story which takes a lot of courage for Ellen with her DLD and selective mutism to open up. Other than the SALT, no other professional has had any experience or awareness of DLD. Things don’t seem to be geared up for young people with communication difficulties. All agree she needs support, but no one takes responsibility or charge, the system is so disjointed. There is no accountability. In all the meetings we attend where this is raised, there is disguised compliance- promises are made but not followed through. Ellen attends all these meetings, and no one seems to think about what this does to Ellen, being continually let down. It is exhausting and I work full time as well, but if I don’t chase things nothing happens. I have to act as the unpaid caseworker and my unconditional love for my daughter is exploited as if I didn’t do it, it wouldn’t be done.
All the while, Ellen gets older, her world becomes smaller and now she rarely speaks and no longer goes out. This sassy young woman is lost. At the minute, despite on paper Ellen being bulletproof with a legally enforceable plan, Ellen is just left behind. She has no purpose day after day, her world is her bedroom, so she becomes more insular. The fear is the less she uses her voice, the more this becomes the norm which is heart-breaking considering the battles she had to go through to be accepted with her DLD.
Ellen needs reasonable adjustments to be made for her to be able to access services, fulfil her potential and become a functioning citizen of the world but in the mainstream this seems a step too far. Awareness and training are a big issue.
Without a voice, life is very hard- how can you express your needs, wants and desires? How do you travel and shop? How do you make and maintain friendships? The less you use that voice the harder it is to regain.
Our hope is for Ellen to re-join the world, but for this to happen the world needs to, in some small way, adjust for Ellen and people need to care."
The I CAN Help Enquiry Service for Parents is open Monday to Wednesday and on Friday 9:30am to 4:30pm. If you have a question or concern about a child’s speaking and understanding skills development, you can book a free call back from one of our speech and language therapists by following the link here
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