reporting a change of circumstances or ending a claim

Hi, I have a question relating to higher rate pip and reporting an improvement. I am appointee for my teenager who gets higher rate mobility and care. This was granted until 2028. However we have been working hard at developing skills and feel there has been improvement, I feel that the higher rate is not appropriate now. They are doing well enough to be considering now studying and living in some student accommodation. This would be close to home in university accommodation and we would have family members supporting daily at first, plus some mentors at the accommodation. They will be supported with budgeting etc. and using the microwave for food etc.
My question is, how should I report this change? Should I do it now or should I wait until we decide if they will go and study and live away, which will be September. Or should I end the claim altogether and wait to see how they manage and then potentially reapply?
Also, we would apply for DSA support with studying. Does this application link up to PIP? As it is also government funded and should we wait to apply for this until we have sorted out the changes in PIP?
thanks, we are obviously pleased our young person is doing well and wants to try to be independent, but it is also a worry and we don't know if this will successful. Any advice on how to go about this please, thanks.

Hello Sylvie,

I really wish you and your teenager well in this new and exciting phase of their life. I know this is probably none of my business, but you did ask for advice and I have been in a similar position in the past, when my son started university. It's always good to hear of an improvement in someone's health but, from what you have said in your post, it seems to me that, between you, the student's family members would still be putting in a large amount of help of the sort which many people would feel is what PIP entitlement is for - the only real change is that the teenager is hoping to go to university; the support they need continues. In order to succeed at university, they will need more help with travel and daily living than someone without a disability. Even then, it will be much more difficult than anyone tells you. Personally, I wouldn't rush into telling the DWP that things have improved until you are absolutely sure your teenager can manage without help; after all, the improvement may only have come about because they are getting the support they need. Losing an award of PIP and applying for a new one is not always easy or straightforward, as I'm sure you are aware. From what you say, your teenager's award still has several years to run, which indicates that the DWP feels they will need help for the whole of this period of time and the award should cover their time at university, all being well.

My son, who has autism, was in receipt of Disability Living Allowance when he started his university course, but was transferred to PIP towards the end of his time there, though not without a struggle. The problem is, PIP assessors may see the ability to attend university as indicating that the student no longer needs any help at all, when, from what you have written in your post, this is very far from the case and several people will still be involved in their care. You need to think about what might happen if any of them were suddenly to find themselves unable to provide this care and whether you could afford to pay anyone else to step in.

Incidentally, if anyone receives Carer's Allowance for providing some of this care, they can still receive this for any time which the student spends at home, e.g. for holidays. (There used to be forms to complete with regard to dates and times of care given during any qualifying period, but these were not complicated, although it did take several weeks before any money was paid. However, I don't know if it is still done this way.) If the student comes home at weekends, you would still be providing care for 35 hours weekly, so any claim should continue without interruption. You might need to check this with the Carer's Allowance Unit to see if this is still the case, but it is what I was told at the time.

You also need to think about travel costs, which will probably be higher than those for a student without any disability, especially if, like our son, the young person needs to be accompanied on journeys because they cannot travel alone. You may find yourselves going backwards and forwards more than you expect.

Entitlement to PIP is about so much more than just the money - it is official recognition that you have a disability, thus allowing you access to other services. My son has a railcard and a cinema card, both of which offer a discount to any accompanying person.

Mentors, or anyone else who helps your teenager at university, can be very helpful in providing letters, etc. as evidence for a PIP claim, so bear this in mind, too. Through the university's intervention, when problems occurred in his second year, our son received weekly counselling sessions with an autism support worker, whose testimony proved important when applying for PIP after his DLA ended. Even if things seem to be going well, don't assume it will all be plain sailing after the first year because the second is much harder. Accept all the help you can get.

As far as I know, DSA and PIP are not linked in any way, so applying for one should not affect the other, but paperwork from a DSA award can be used as evidence to support a claim for PIP.

Sorry if I sound negative - I really don't mean to be. However, this is such a big step for any young person, disabled or not, and I truly understand what you mean when you say you are pleased and worried at the same time. It's exciting, too! After all, they've come a long way to reach this point and that's success in itself. Despite many setbacks (including having to repeat his second year), my son did eventually graduate and still feels going to university was the best experience of his life so far.

I hope you can come to a decision you feel is right for your teenager and your family and I wish you all the very best of luck.

Wendy Woo

Thank you so much for your detailed reply. Apologies this is much later, I am still working out how to find my posts in this forum!
So they are moving this weekend into a shared flat. So I think I am correct in that I must now report a change of address and a change in circumstances as they will be doing some microwave cooking and walking from the flat to the lesson, as we have practised this a lot and met wit a welfare officer to practise. But as they get higher rate, I think this is a change.
thanks

Hello again Sylvie,

Good luck with your young person's move at the weekend and I hope everything goes well. It's that time of year again - we have been away taking our younger son back to uni and it's always an exciting time, but a rather anxious one too! (Even without any ongoing health problems.)

I've read your other post and the response from BIS and I probably shouldn't interfere, nor do I want to appear unnecessarily negative - after all, I, too, hope all goes well for you - but I'm worried you are in danger of jumping the gun here and informing the DWP of an "improvement" rather than just a change of address/circumstances. I have found, over the years, that circumstances may change, but my son's condition does not. Sometimes, when things are going well, there is a perceived improvement but, if something triggers an upset to his equilibrium, his mental health and behaviour deteriorate very quickly and he then needs extra help, not less. I really feel you should take more time to see what happens because it may not be easy to regain any support lost. This is just my personal opinion, obviously, and you should do what you feel comfortable with, but it seems to me that at least one decision maker at the DWP thinks your student will need this level of support for several years to come, at least until 2028, which gives you a reasonable amount of leeway in the time you might need to judge this for yourself.

With regard to the change of address, the DWP were happy to accept my son's home address as his permanent address and point of contact, especially as I was acting as his appointee, and it seems to me you are in a similar position. Many families find that their young people at university spend much more time at home than they were expecting, and mail is less likely to go astray if it is sent to their home address.

Regarding what you have said about cooking, there is a very helpful series of posts at the top of the forum (a response by LL26, one of the Moderators, to a query from Blueberry Owl) which you should read. Microwaving and ordering takeout can all too easily be misconstrued as "cooking", especially by students and the DWP!

I think the clue to all this - please forgive me - is your use of the phrase "trying to manage". This is not the same as "managing". I know because I am still struggling with all this myself - sometimes it seems to get easier, then you feel you are right back where you started, facing a truculent two-year-old in an adult's body and no idea how to cope.

My son has continued to receive PIP, even though he now has a job, but it is a fight every time. I don't think you should be too quick to relinquish this help. Again, please forgive me, but it sounds as though you really need it. It's not just the money - it's the recognition that your young person has a disability and the access to other services that this allows.

I really hope all goes well for you and your young person at the weekend and beyond. Please come back to the forum and tell us how they are getting on.

Best wishes,

Wendy Woo