13/03/2026
I’m posting this as the founder of an autism charity because this week something happened that should concern all of us.
This week we had to protect one of our young people from a system that was supposed to support them.
At Glowsticks, safeguarding will always come before process.
We support a young person with profound autism, severe anxiety, dyspraxia, hypermobility and significant trauma. We supported them to apply for PIP and completed their forms with detailed professional evidence about their needs.
They were asked to attend a telephone assessment. With support present, it took around 1.5 hours just to complete half because of the distress the process caused.
We had to stop because they simply could not cope.
We asked if a decision could be made based on the extensive evidence already provided to prevent further harm. This was refused. We were reassured the second appointment would be with the same assessor and would only cover the remaining questions.
Instead, a different assessor called and told them they would have to start again from the beginning.
The result?
A severe distress response and a safeguarding incident.
At that point we stopped the assessment. Because no benefit assessment is more important than a young person's safety.
We again asked for reasonable adjustments.
We again asked for a decision based on evidence.
We again explained the safeguarding risks.
The response?
Their claim was closed.
We have since been told if we disagree we should "contact our MP".
So we are.
This is not about one young person. This is about how systems respond when disabled people cannot engage in the way the system demands.
Reasonable adjustments are not optional.
Safeguarding is not optional.
Trauma-informed practice is not optional.
We are incredibly proud of this young person. They tried. They trusted the process. And when the system failed them, we stepped in to protect them.
That is what we do.
If you ever wonder why advocacy organisations like Glowsticks exist – this is why.
We will always stand between our young people and harm.
Always.
I am disgusted and appalled - I have contacted Andy McDonald MP with a hope of getting the young person the support they deserve.
Department for Work and Pensions - DWP - is this really what you want to achieve with PIP?
