PIP and uni

[Everything25]

DS (ASD, dyspraxia) was awarded PIP (higher rate living, lower rate mobility) at 16. I am his appointee. He is now at uni, first year, his needs hadn't really changed when he went and his permanent address is still ours so we didn't report a change to DWP. He needed a HUGE amount of support in the run-up to going and masses of prompting by phone on an ongoing basis, plus having to go in catered halls as unable to cope with shopping, cooking etc. Had to travel home by lifts from us as he was unable to use public transport independently. He has needed a significant amount of support in arranging work experience for this summer. He has DSA and support from the uni.

However, now I think things have started to change. He has started to use buses and trains by himself (albeit still with a lot of prompting for the first time on any given journey and no way would he cope with flying or foreign travel without assistance when NT peers would). On the other hand he is struggling to learn to drive because of the gears (he needs a manual licence for career reasons if at all possible so there are extra lessons needed which PIP is being used for).

He is managing money better than he used to (although again nowhere near NT levels, eg needs assistance to open any new account or if anything out of the ordinary happens). Overall though the prompting has fallen away a bit in recent weeks.

I think we probably need to report these changes now, what is likely to happen, will it be a full reassessment? Or do they just reassess those changes and adjust your previous score? Obviously we don't want him to lose any of it, it was hard fought and his needs are still highly significant and it feels as though when one need becomes less another pops up to take its place. Can anyone advise?

How long was his award for? If a reassessment is coming up anyway relatively soon then I probably would not notify changes as it sounds like he is still getting / needing a lot of support albeit some from the university rather than you.

His award letter said "until Oct 2024" so about 18 months to go. I assume that in the 16+ age group they do expect some changes in some recipients due to increasing maturity, as some of the questions I caught myself thinking even NT 16 year olds would struggle with.

@Everything25 please can I ask where you’re up to with this? I’m similar with my DS 18 just a year behind so not started yet. Very similar needs from reading your post.

Having him home over the summer has made me take a long hard look at it all and realise he does still need a significant amount of support in most of the PIP areas so we haven’t contacted the DWP.

Hi. My DD is starting uni in a few weeks, and I was wondering the same thing regarding PIP. I am not sure how she is going to eat. My guess is that she willl live on Pot noodles and takeaways.

BUT, she will be living independently. So should we cancel the PIP? Then she won't have the car, and won't be able to get around.

I honestly don't know what to do.

It’s really hard tbh. We only get low rate mobility so no car, and I think just give a couple of months to settle then see. If you let it go too long then contact DWP, and they ask when it improved, it could be complicated

I really would not cancel PIP just because a dc is about to start university. Their needs have not changed and they are going to have to cope with much more than while living at home. PIP is designed to help with independent living.
If after at least a full year at university, it is clear that they are managing as well as their non- disabled peers then it might be right to think about contacting DWP.

Both my dcs started university while claiming PIP. It was clear that they both continued to need a lot of support. Both had renewal assessments while at university and both (after mandatory reconsideration) continued to get their previous awards.

Thank you for posting that NoHaudinMaWheest. It's so difficult to know what to do - ds2 has improved a lot since his initial assessment for PIP but at the same time still needs substantially more support than you would expect a young person of his age to do (e.g. had to rescue him from the city centre the other day because he got into a flap about paying for the bus or couldn't cope with me parking in a shop's designated carpark and then wanting to go to a different shop). So at the moment I alternate between he should not be getting PIP if he is not living at home and thinking how on earth is he going to cope. Mostly the latter I think.

Yes there are so many more challenges when they are not living at home. Ds did get through but needed lots of support both from me and then also a Social Services funded support worker.
Dd was in halls with lots of services and we did pay for additional support when we saw how she struggled in 1st year, but still needed a lot from me. In her 2nd year it was even more difficult and if Covid had not intervened and meant she had to come home anyway, she would probably have had to take a year out.

We then moved to her university city (something that was planned anyway) so she has been able to continue her course and live at home.

@NoHaudinMaWheest Really good to know other people have been successful at coping with Uni living.

DD is going into self catering halls. She has weekly boarded at school before, but of course that was completely structured and fully catered.

She is VERY MESSY and VERY UNORGANISED. I'm not exactly sure what help she can get from the university with regards to living help.

The university won't help with anything that is standard living beyond providing an adapted or ensuite room.
However there are some other routes. Is your Dd getting DSA? If she has a mentor as part of that some of them will help with everyday living although technically they are there to help with structuring work. Obviously if daily living is chaotic it will impact on work so it is not that much of a stretch.

There is also Brain in Hand which helps with structuring and reminders about daily living. Dd had this as part of her DSA and found it quite useful especially initially.

It might be possible to get a support worker through your local Social Services but it depends on the degree of difficulty your Dd has.

@NoHaudinMaWheest I do agree with you. But my DS had some descriptors that gave points for things like not a managing public transport so if that changed I guess I would have to contact them? At the moment he can’t but if he manages then that no longer applies. I don’t want them to turn round and say oh you should have told us the minute he managed xyz on his own? It’s a question of how long to wait really before getting in contact

@OneInEight exactly the same here. He’s improved in a couple of areas but I have never known if we need to let DWP know of small changes or not? Overall, as his DSA assessment shows, he needs a huge amount of support and he’s still living here!

poppy I suppose it depends how many points he gets for the use of public transport. If he currently gets points for being unable to use it at all but then is managing independently nearly all the time then it would be appropriate to report that. My ds gets points because he can only manage familiar journeys. He has become more confident about managing those familiar journeys but still couldn't manage something new alone so I reckon that his points still apply.