Many thanks to everyone who has so far completed our survey on your experience of transferring from child DLA to PIP, there’s still time to take part if you haven’t already.
A very high proportion of responses are from parents of children who are neurodivergent and/or have a learning disability and one of the standout results so far is that there is a huge variation in the quality of assessments that young people experience on moving to PIP.
For some, the assessment is a positive experience.
“I had a really good assessor who listened very well to my daughters complex needs and actually explained some to me, as being part of her autism, signposted me where to get help for sensory issues regarding food intake. As a result of their knowledge and help, my daughter has now been diagnosed with AFRID and seeing a dietician. It’s not all bad with the assessments.”
“The dwp staff were different than they are with adults, not sure if this is usual but they seemed less jaded and more empathetic.”
“I felt the assessor ( who was training ) was empathetic First one ever to appear genuine.”
Sometimes however, even though the assessment is a positive experience, the results are still dubious:
“I requested an in-person assessment, which was offered, and it was very effective. The assessor was able to tell from my daughter's body language and facial expression when she didn't understand what she had been asked. The assessor then waited patiently or rephrased the question or asked me. So I was very happy that the in-person assessment was available. I requested the assessor's report promptly, just in case an appeal might be needed. It was quite carelessly written and inaccurate throughout. My daughter was given points she shouldn't have had, while being denied points she should have had for other tasks. If it weren't for some identifying details in the report, I would have thought they'd mixed her report up with someone else's! The inaccuracies balanced each other out and the level of the award was fair, so I didn't need to challenge it.”
And some members didn’t have to have an assessment at all:
“The decision maker called me and clarified about my sons transport to school and lack of independent travel and contacted his specialist adhd nurse which avoided the need for assessment which i was grateful for.”
“We weren't required to have an assessment. They called me and said we had done their job for them in what we had submitted and I am pretty sure that wasn't me but son's OT who was very clear in her statement of support - even without clinical reasoning. I was asked an additional question about food prep and something else that I forget, but it was less than 10 minutes and they said it wasn't necessary to do a proper assessment.”
But for others, the assessment was a dire experience:
“It would’ve helped if the paramedic assessor hadn’t asked if she put bilateral hearing aids in one ear!”
“The initial assessment was by a physiotherapist who decided that because the young person wasn't on medication or under the hospital there was no issues. She deemed eating a dry pot noodle as him being able to make a meal The second and third assessors discounted his education needs as he was at a main stream college despite evidence he was in a SEND hub and still not coping. He was eventually assessed before tribunal by a4th person who awarded higher care and mobility. Unfortunately mum lost her carers allowance and housing benefit whilst awaiting a decision which caused a lot of stress.”
“Would’ve helped if the assessor actually assessed my son based upon his conditions, rather than asking questions that have no relevance. Upon asking for the PA4, the assessor wrote completely different conditions and medications etc on this, it was like it was someone else’s report!”
We were pleased to see that a lot of respondents had found the Benefits and Work resources helpful:
“The resources a good ‘tick list’ to make sure everything has been covered. And I knew to repeat myself, when needed, yet again, in each different section on the PIP form.”
“Brilliant resource”
I found everything very helpful. You seem to have covered everything I needed to know.
“I used the Benefits and Work Guides for help with my son’s first Mandatory Reconsideration, even to the extent of using some of the wording suggested regarding possible telephone contact to dissuade people from continuing with the process and, as this was successful, I felt it must have been beneficial.”
“In preparation for my son’s PIP review a couple of years ago, I purchased the Benefits & Work training package, so felt better equipped to face the process a second time. He was awarded PIP this time, but at a lower level, so I again requested an M/R, which was unsuccessful. With encouragement from the Moderators and other members of the forum, we moved on to appeal and were successful when someone at a more senior level reviewed the tribunal submission and evidence – again, I believe this was due to the supersession rules, which I would not have known about but for information from B & W’s legal expert. Knowing I had the support of other members was what gave me the confidence to continue, but one of the things I feel is most important about B & W is that it is a subscription service and (so far as I am aware) does not rely on funding from any other organisation. Therefore, it has no loyalty to anyone other than its members, so we can be confident B & W will always act in our best interests.”
“It was at this stage of the process that I first discovered B& W and became a member, so that I had access to the detailed information contained in the guides and began to understand that DLA and PIP are very different benefits.”
Unfortunately it’s clear that not everyone who makes the transfer discovers Benefits and Work before doing so:
“I didn't know of the guides then but it would have helped in a highly stressful time. I had spoken to other parents in a monthly support group but they had no idea either.”
So, there’s still work to do on letting people know we are here as well as making sure that members helping their child make the move are as well informed as they possibly can be.
If you have any experiences or insights you would like to share, please complete our brief survey.
