Two-thirds of parents were happy with their 2015 EHCP experience…
Along with the slew of information released by the DfE last week came a very long, detailed survey of family experience of the Education, Health and Care Plan process in 2015. It …
Act now to protect the NHS funding of rare disease medicines like Ava’s
Having a child with rare disease can mean that you are given very little information about their condition. Parent carers find themselves becoming the expert, rather than the professionals who are …
Tribunal research shows getting it right at the start improves disabled children’s outcomes
The most consistently effective way to resolve disagreements about SEND is to appeal to the Tribunal, according to the evidence contained in a complicated research report released by the DfE. …
Children with SEND risk rejection by mainstream schools over funding gap
Pupils with special educational needs and disabilities (SEND) are at risk of being turned away by mainstream schools due to a lack of funding and rising demand, according to The …
Is autism a difference or a disorder? The truth is in-between
I don’t think anyone is unaware of the word ‘autism’ these days. The problem still lies in understanding how vast a spectrum it is and how to adequately provide for that, …
Explaining the Annual Review for a child with an Education, Health and Care Plan
Although Statements of special educational needs have been around since 1981, for many parents, the Annual Review (AR) remains a bit of a mystery, even for those of us who …
Supporting families to participate in making person-centred decisions
One of the big things that was supported to be improved for disabled children and families was person-centred planning. De-jargonned, that means making the provision fit the person and not …
Co-regulation in Autism: synchronising emotions, intentions and thoughts
In a previous post in my series on co-regulation in autism, we looked here at what it is and how important it is to establish co-regulatory roles when working with …
What’s in a name: Ehlers-Danlos Syndrome gets an important makeover
It’s rare for a medical condition to have its sub-types reclassified. It happened to autism a couple of years ago and there was uproar as people were worried they would …
All about ALLFIE and its campaign for truly inclusive education
My sons’ headteacher at their independent special(ist) school, once said to me that inclusion was about being included in society as an adult, not squashed in a one-size-fits-all classroom. And, …
Half a billion and counting: Tracking the SEND reforms spending
We’re now well over two years into the SEND reforms, and the reform journey so far has been long, winding, and very, very expensive – nearly £500m spent to date, …
How a parent held her council to account for its SEND failures
Today’s parent story is a classic case of a local authority’s disregard of the SEND reforms: poor communication and lack of cooperative working across services, resulting in a failure to …
£215 million cash boost for local areas to improve SEND facilities
The Department for Education has today announced £215 million funding for SEND. It’s to be split between almost every English council to both create more school places and to improve …
The SEND Superheroes ready to spruce up your school’s provision
I started Special Needs Jungle with the intention of spreading knowledge to parents about how to get themselves organised and prepared for their child’s statutory assessment application. I even wrote …
Rare disease research is vital to patients. Now let’s use it to improve services.
Rosie Collington of Rare Disease UK writes… The UK has a reputation internationally as a leader in rare disease research. Over the past few months at Rare Disease UK, we’ve …
The heartache that lives alongside our son’s very rare disease
Rare Disease Day is almost upon us and we have the third of our parent posts today about their lives with their child who has a very rare condition. We …
Finding my son near death started our rare journey to his genetic diagnosis
It’s bad enough when your child has a severe illness, but when you discover it’s a condition few have heard of, the journey to getting them the right treatment gets …
YouGov survey: Teachers blame “parental pressure” for misdiagnosis of SEN
A YouGov poll of more than 800 teachers across the UK, has shockingly revealed what is potentially one of the biggest reasons the SEND reforms are not making as big …
Post 19: Education, health, care and training support for disabled young people
A quick post today to let you know about guidance the Department for Education has published for 19-25 year olds with SEND. Too many young adults are not getting the …
A 16 year quest to diagnose our rare bendy daughter
Rare Disease Day 2017 is just around the corner and, as we always do at this time of year, we like to bring you some family stories of coping when …
