Welcome to Family Hub and thanks for joining. I’m one of the Mencap information and advice officers and we do hear from parents in your situation quite often. I’m sorry that you’re finding it difficult to get support for your son. It’s really hard when a child falls into ‘borderline’ categories - it’s important to look at your son’s needs for support as much as his diagnosis.
EHC plans should offer a more holistic approach covering health and social care needs for someone in an educational setting. They now extend from 0 to 25 years for anyone who is in education. EHC plans are necessary when the school cannot support the pupil through the usual special educational needs co-ordinator (SENCO) channels. So it’s important that you explore this option too.
Part of the special educational needs and disabilities (SEND) reforms is to provide an information, advice and support service to families, children and young people with special educational needs and disabilities (SENDIASS). They offer an independent, flexible and supportive service to give parents/carers, children/young people 0-25, schools and professionals the opportunity of working together to meet the special educational needs and disability of the individual pupil.
You can find your local SENDIASS on this link: https://councilfordisabledchildren.org.uk/information-advice-and-support-services-network/find-your-local-ias-service
Their role is to mediate between families and schools, and to offer support through the appeals process. If you’ve just been refused the EHCP you can appeal the decision at tribunal but you have to do this within a set time frame. You don’t have to do it on your own.
Every local authority must also publish a ‘local offer’ of services and support available for children with special educational needs and disabilities (SEND). You could look up your local authority’s local offer to see what support might be available for your son.
IPSEA (Independent Parental Special Education Advice) has a website with useful resources and template letters: https://www.ipsea.org.uk/
You’re right about services using a threshold IQ of 70 or below for learning disability but as you can see, there is a lot more to consider than your son’s intellectual ability. The following is from the British Institute of Learning Disability (BILD): http://www.bild.org.uk/resources/faqs/
'Although definitions may be important in some contexts, the emphasis should always be on the person’s rights, dignity and individuality and not ‘labelling’ people unnecessarily.
The term learning disability covers a broad range of individuals, each with different strengths and capabilities, as well as needs. Knowing the degree of intellectual impairment a person has tells you very little about who they are, but these terms may help the person and those who support them in understanding the needs they may have, and the kinds of support they may require. When providing care and support the person should always come first and the label or category second.
In the past, diagnosis of a learning disability and understanding of a person’s needs was based on IQ scores; today the importance of a holistic approach is recognised, and IQ testing forms only one small part of assessing someone’s strengths and needs. Assessments of adaptive function focuses on how people can manage their daily living skills and what support they may need; this form of assessment is considered more useful in assessing the impact of any learning disability on a person than an intelligence test.’
I hope that helps – do remember you can call Mencap Direct on 0808 808 1111 if you want to discuss things in more detail.