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Higher education

Talk to other parents whose children are preparing for university on our Higher Education forum.

Original poster

Anyone have a DC at uni receiving PIP and with care needs?

13 replies

HairyMaclary · 01/04/2023 21:53

I have some questions? DC has firmed and insured 2 London unis. He won’t be living at home but we are not too far away. We’ve got a DSA assessment next week but that seems only for the education side. We’ve sent evidence to the uni for an accessible room but he needs some personal care as well. At a v minimum help with cleaning, changing sheets and laundry and I’m concerned about about food (he isn’t) no catered halls have accessible accommodation! He gets high rate PIP both care and mobility. We still help him with socks and shoes but we’re hoping to get that sorted before he starts. How can we go about sorting this. Is this something we do privately? Can the uni help?

OP posts:
Harebrain · 02/04/2023 07:50

We paid a carer from an agency to help my DD when she was at Uni and yes, this needs to be funded yourself. It took quite a bit of setting up but worked well in the 3 years she was there. They cooked for her, helped her dress, took her food shopping and helped with laundry and cleaning.

Original poster
HairyMaclary · 02/04/2023 08:16

Thanks @Harebrain . Did you arrange this through a local care agency? Were the university involved in setting this up at all? Can I ask how many hours per day / week your daughter had?

OP posts:
Harebrain · 02/04/2023 08:28

Yes, we did arrange this with a local care agency. I trawled the internet and emailed 3 of them to outline my daughter’s needs. We went with one who had a member of staff who had previously supported a student in my daughter’s Uni. We met up with the Agency manager a couple of times and with the two staff who were going to work with my daughter. The Uni weren’t involved other than giving the carers a permit to park on site and an extra set of keys for the carers. Student Support (run by 3rd year students) were very helpful too. My daughter had a fall one evening while in a video call to me. I phoned the Student Support number and they were there within minutes to check her over. They helped her out two or three times when she had issues overnight.

Harebrain · 02/04/2023 08:30

My daughter had about 15 hours a week. Morning calls to help her make breakfast and dress and a call in the evening to cook dinner. The extra hours were for shopping trips and laundry. We paid mileage to the carers too.

Harebrain · 02/04/2023 08:36

It was hard work getting everything set up and my daughter struggled a bit during her first term but it was the best thing she ever did. Ten years on, she lives independently in her own home with carers supporting her. Not bad for a child I was told would never walk, talk, go to mainstream school or be able to live independently. 😃

Harebrain · 02/04/2023 10:12

I should also have said, DD had a care package via Social Services so when I say we payed ourselves for her care, I meant, via Direct Payments which we set up a separate Bank Account for. We had a Social Worker who helped us sort that all out. It went down to the wire, as her package didn’t get signed off until about a week before she went to Uni despite us starting the process a full 12 months before.

EmmatheStageRat · 02/04/2023 14:22

Harebrain · 02/04/2023 08:36

It was hard work getting everything set up and my daughter struggled a bit during her first term but it was the best thing she ever did. Ten years on, she lives independently in her own home with carers supporting her. Not bad for a child I was told would never walk, talk, go to mainstream school or be able to live independently. 😃

Wow! That’s incredible. Well done, you - and well done, DD. I’m following here as I have DD1(15), who is blind and has a brain injury as well as autism and ADHD, contemplating university.

Harebrain · 02/04/2023 15:37

Thank you @EmmatheStageRat It was worth all the effort as I doubt that she’d be living independently now if she hadn’t been to Uni. Plan well ahead and be prepared for lots of phone calls and meetings. Good luck to you and your DD too.

Bunnyannesummers · 02/04/2023 18:16

Definitely set up meetings with student support or disability support at each uni to discuss how it would work, they won’t sort it for you at most but they’ll work with you to get it in place - things like getting the carer fob access/parking and little things like that to actually make it work. Some universities have laundry services you can pay for so worth discussing things like that as well.

Original poster
HairyMaclary · 02/04/2023 18:23

Thanks both. I foresee a good few meetings ahead! It would help if I was sure he was going to get the grades for his firm choice! I really don’t want to do this again after clearing!
@Harebrain did your daughter have PA hours before she went to uni? DS doesn’t so I don’t know if we need to get this sorted first.

OP posts:
Original poster
HairyMaclary · 02/04/2023 18:25

@Bunnyannesummers I think I may need to take the lead with those meetings with student support. I might get DS to email then giving me consent to talk to them separately.

OP posts:
Harebrain · 02/04/2023 19:16

No, she had no PA hours prior to Uni.

Harebrain · 03/04/2023 10:16

@HairyMaclary we had a meeting with Student Support before my DD applied and 2 more as we went along.

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