DLA to PIP?

Hi,
My daughter has been on DLA since she was 11, we have not yet been asked to apply for PIP and she is 28 next week... She is significantly worse and has a new additional diagnosis (ASD and now Bipolar). Thing is, as she has an indefinite DLA award (middle care, low mobility) I haven't wanted to put her through a reassessment process as she will find this extremely stressful. We have been muddling along with no help since covid, but now with my 60th birthday looming I feel I need to force the help issue and get my ducks in a line so to speak, to start preparing her for life without me... so i may as well bite the bullet and initiate a change of circumstances on the DLA which will start off the change to PIP I assume. She should be entitled to the higher rates on both components, but i know it doesn't always happen as it should.

So, my question is, should i Initiate the change of circumstance or still let things lie? Are the stats for the changeover positive? and why haven't they asked us to move to Pip already? We did get the letter when she was 16, to prepare for the change when asked, but here we are 12 years on and nothing!

JB

Hello jewelbee,

I sympathise with your situation because, like many other B & W members who are in a similar position, caring for adult children who still need our help, I am facing the same dilemma regarding preparing my son for life without me. It is a topic which often crops up on the forum and there are several posts which you may find helpful, although it might be difficult to find them. (Look in particular for those from Anisty which are very positive and quite uplifting – I hope I’m allowed to say this? I’m happy for the Mods to censor me if not!)

Regarding the transfer from DLA to PIP - I can’t tell you what to do, but you should be very careful before you initiate the process yourself and be prepared for a fight. My son, too, had an indefinite award of DLA (middle rate care, low mobility) which he had been receiving since he was five years old, but he was refused PIP at first and I lost my Carer’s Allowance at the same time; following a Mandatory Reconsideration, he was granted an award of PIP which matched what he was entitled to for DLA, but only for three years. It took nearly a year to get my Carer’s Allowance reinstated.

Thanks to the Covid restrictions, he was not reassessed for another five years, but then his award was reduced to Standard Care only and we again had to fight to get it restored to what it had been previously.

Personally, especially with hindsight, I would have preferred to be allowed to keep his indefinite award of DLA, even though the money was less. PIP is a completely different benefit, with criteria which are hard to apply to lifelong neurological conditions, but I did not understand this at the time. It seems to me that it is designed more to support people who have physical conditions and mobility problems which more easily fit its rigid rules, but many people report problems applying for PIP with these too. Reading the guides will help, but remember PIP assessors are a capricious bunch who take no notice of evidence from medical professionals who are much more highly qualified than they are, instead tending to form their own opinions without even reading any of the supporting documents. Rather than listening to what you tell them, they ask many trick questions, then write reports based on nothing more than their own assumptions. (In my experience, DWP officials tend to have more understanding, especially the further up the scale of experience you go, and they seem to decide on DLA themselves, without any input from assessors, although I don’t know for sure.)

I expect another battle in a few years’ time, so have been collecting documentation in case I am not the one to apply on my son’s behalf. However, if he had to do this alone, I am certain he would not receive any benefit, as he is never able to advocate for himself, despite being reasonably articulate in many ways. Sometimes it seems to me that anyone in any kind of authority at all (not only the DWP) can actively use someone’s disability to manipulate them, despite the legislation supposedly in place to prevent this.

Another thing to bear in mind is that all political parties have said they want to make changes to PIP in future. While it’s possible that some of these may be beneficial to claimants, it isn’t looking that way at the moment. It may be best just to wait and see, but hang on to your daughter’s DLA in the meantime.

I really don’t want to be a prophet of doom – I live in hope of a fairer system for all people with disabilities – and I wish you all the best whatever you decide to do.

Wendy