Cerebral Palsy
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Going to university

KittyTinkerKittyTinker Member Posts: 77 Pioneering
edited January 23 in Cerebral Palsy
My son in year 13 and and his offers for universities have all arrived now and I have now got to accept that my little boy will be leaving home. His first choice is 4 hours drive from home and as neither my husband nor I went to university ourselves we just wondered if anyone with similar disabilities has any life hacks or know of any services we can request. The college he has chosen does have catered accommodation on campus. His fine motor skills and random movements mean that he can’t pour drinks etc (we have spent a small fortune on drinks dispensers but to no avail) and although he can do some of his own physio I do a lot of massage and stretching on his right side which is much tighter than his left. Also I worry about him going out for meals etc when he goes out with us I can discreetly cut up tricky food. I’m sure there are many other things that I should be worried about so please add to my list especially if you have a solution. I want him to be as independent as possible. I should probably add that he is grade 2 on the gross motor function classification guide, so can walk for short distances and use an ice bike to get between lectures but his fine skills aren’t great. 
Many thanks for your time 

Replies

  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Sort about the title I don’t know how that happened it should just read going to university 🥴
  • woodbinewoodbine Member Posts: 3,544 Disability Gamechanger
    edited January 23
    Being disabled shouldn't be a barrier to him going to uni, once he has finally decided where he's going you should speak to student services at that uni and they will be able to advise what help will be avaliable. However somebody will be along shortly with more knowledge.
    my advice is given freely and is correct to the best of my knowledge.
  • MarkN88MarkN88 Member Posts: 645 Pioneering
    Have you looked into disabled students allowance? He may be entitled to help. 

    He should also contact the student services team at the university he intends to study with and see what support they can offer. 

    Most universities from experience will have a disability student advisor he can access. 
  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Hi thanks Woodbine and MarkN88 yes his first choice are going to contact us and are aware of his disability as they had to take this into account for his entrance exam and his interviews. I’m more thinking about life hacks so that when he gets there he can be as independent as possible. We have found out lots of things just from trial and error like dispensing all his toiletries into pump dispensers, sticking wii controllers together so he can use them one handed using Velcro where buttons should be etc but there are loads that we haven’t found solutions for. Putting on socks takes for ever pouring drinks milk etc even handling wallets money cards keys etc if someone has little tips that would just make life easier. 
    Many thanks
  • Ross_ScopeRoss_Scope Scope community team Posts: 2,897 Disability Gamechanger
    Hi @KittyTinker

    Great to hear your son is going to university, I'm sure it will be a super experience for him, what will he be studying? 

    As mentioned above, speaking with the university's student services team would be a good idea, but as far as little life hacks are concerned I'm not sure what I could advise you for those scenarios you mention there.

    Might also be worth finding out if there is a disabled students union at the place where he ends up going, it might be beneficial to have that peer support.
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  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Hi Ross yes we are all super excited but all really nervous too especially considering current circumstances and if things don’t change he may well be studying from home but I am a firm believer in being as prepared as possible. He will be studying Politics Philosophy and Economics and I think he has been having a good look at clubs and societies. 
  • woodbinewoodbine Member Posts: 3,544 Disability Gamechanger
    Fingers crossed that by October we will all be back to something that resembles normal life.
    my advice is given freely and is correct to the best of my knowledge.
  • Richard_ScopeRichard_Scope Scope community team Posts: 2,697 Scope community team
    HI @KittyTinker
    I see that you've already had a lot of great advice. I'm also going to tag in @forgoodnesssake to share their experiences of being a parent with a son in higher education.
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  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    Hi and thanks @Richard_Scope .  I did see this thread but tbh because it is mainly life hacks and independence stuff that the OP is asking about it's not really so relevant for us as son has/needs full time PA support due to severity of CP.  However I guess I have a bit of  experince around other aspects of Uni life re reasonable adjustments, what the uni should provide, everything that DSA does NOT provide etc! So happy to help if I can.
  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Hi thanks Richard and forgoodnesssake yes the university are getting in contact about a full time TA etc but apart from early years and school assessments we haven’t had much input from OT we don’t know anyone with similar disabilities and have always managed as a family. But now we are considering how he can be as independent as possible if it is a case that we have to get someone in each day possibly morning to help him with certain things and set him up for the day then that’s fine but he wants to be as independent as possible and wondered if people with similar problems had any tips. But I’m sure we will muddle through somehow. 
    Many thanks x
  • newbornnewborn Member Posts: 678 Pioneering
    I have to admit I wouldn't advise any other person to go to university in the old fashioned way, at all, and especially not to do p.p.e., or any of the other the non- employment-useful degrees,  but this is an exception.  There is loads of money for disabled students, and loads of help. Also, because of his disability it will be especially important for him to go and live independently and this is the ideal way to do it.   
    There is a gadget for putting on socks.  It is  a sort of cage, a bit like a shoe-repairer's  shoe-stretcher.  The sock goes on it, the user easily pushes the foot inside the cage, then pulls to slide the cage up the leg and out, leaving the sock stranded firmly on the foot, if it likes it or not!  
  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    edited January 25
    I’m not aware that there is loads of money for disabled students! There is the Disabled Students Allowance but it has been so decimated over the last few years that it really only provides some specialist equipment and very specialised professional support. All everyday support etc must be provided by the university or the student themselves (maybe via a Direct payment from their local authority or whatever) some university do have very good support services though so they are really crucial people to speak to. 
    Disabled students in receipt of PiP may also be able to claim ESA .. though still some are told that they can’t..
  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Many thanks I’ll look into the suggestions. We will be speaking to the disability department of the university next week and I’m sure they will have had previous experience. It’s difficult because apart from a handful of school trips where he had assigned TAs to help he hasn’t been away from home. I worry we have perhaps been a little too protective and that living from home will be a huge shock and we won’t be just around the corner if things aren’t going well. 
  • MPowell_1991MPowell_1991 Member Posts: 25 Connected
    My son in year 13 and and his offers for universities have all arrived now and I have now got to accept that my little boy will be leaving home. His first choice is 4 hours drive from home and as neither my husband nor I went to university ourselves we just wondered if anyone with similar disabilities has any life hacks or know of any services we can request. The college he has chosen does have catered accommodation on campus. His fine motor skills and random movements mean that he can’t pour drinks etc (we have spent a small fortune on drinks dispensers but to no avail) and although he can do some of his own physio I do a lot of massage and stretching on his right side which is much tighter than his left. Also I worry about him going out for meals etc when he goes out with us I can discreetly cut up tricky food. I’m sure there are many other things that I should be worried about so please add to my list especially if you have a solution. I want him to be as independent as possible. I should probably add that he is grade 2 on the gross motor function classification guide, so can walk for short distances and use an ice bike to get between lectures but his fine skills aren’t great. 
    Many thanks for your time 
    @KittyTinker - firstly, massive props to your son for taking the plunge into University life. Speaking from experience of my own, although i commuted every day back and forth from home, i absolutely loved every single minute of it!

    Speak with Student Finance England to see whether they'd be able to pay for carer support, i know that during my time at uni they funded my carer up to 30 hours a week to support me throughout the course of my learning, this included assisting me with attending lectures and note taking for me.

    Also speak with your local council to enquire about direct payment support, as on top of the funding from Student Finance England i received an additional 30 hours per week to support me with personal care, attending appointments etc.

    I hope this helps? If you have any further questions please get in touch!
  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    edited January 27
    Unfortunately student finance will no longer fund any support of this kind. The universities have to fund this themselves  since dsa was “overhauled” about 5 years ago. Personal care support (not academic support) needs to be funded by the student in some way (ie from benefits or social services or health funding) this can be a really tricky area especially if the university is not in the home local authority area. Some unis will subsidise accommodation, so for example my son, in an adapted en suite room in halls, only pays what students pay for more basic halls accommodation on the basis that he has no choice but to have a bigger en-suite room. Some may also subsidise a carer room if that is needed.
  • MPowell_1991MPowell_1991 Member Posts: 25 Connected
    Unfortunately student finance will no longer fund any support of this kind. The universities have to fund this themselves  since dsa was “overhauled” about 5 years ago. Personal care support (not academic support) needs to be funded by the student in some way (ie from benefits or social services or health funding) this can be a really tricky area especially if the university is not in the home local authority area. Some unis will subsidise accommodation, so for example my son, in an adapted en suite room in halls, only pays what students pay for more basic halls accommodation on the basis that he has no choice but to have a bigger en-suite room. Some may also subsidise a carer room if that is needed.
    Crikey, talk about putting people on the back foot :/ i guess i was extremely fortunate to have studied when i did in that case.
  • newbornnewborn Member Posts: 678 Pioneering
    Ask the uni and the union if disabled students will be supported by organised fellow students on a voluntary rota  basis.
  • newbornnewborn Member Posts: 678 Pioneering
    Your son will be an excellent part of other people's education, without meaning it.  Those who demand counselling for the trauma of having chipped their nail varnish will have a little reality check which does them no harm at all, when they see others with more problems !   

    I'm hesitant how to suggest something I was hoping to put in the plan B box at the back of your own and his minds.   Bear in mind that many students do not deal with being away from home, even those who have been on holidays with friends, sleepovers etc.    On the face of it, going to live at uni should be easy, yet they drop out and go back home.   For your son, this really will be difficult, just on purely practical reasons of physically getting round and dealing with what to others is straightforward stuff concerning personal care etc.   
    (Of course there may be a paradox, that he might in a funny sort of way have the advantage over others, because having problems is a perfectly normal day to day experience of his ordinary life !)

    But do you think that for both of you, maybe just bear in mind that for practical reasons, getting through one day will be a triumph.  One entire week will be amazing.  If he actually gets through that, maybe he could set a target of trying to stick it out to the next half holiday, but not regarding it as the end of the world if it cannot be done. 
     
    Have the triumph bar set at one day, one week.   At any stage, there's nothing wrong with switching to Plan B. More and more universities are translating their courses to make them possible to do on-line.   In future, probably the full time student in residence near the uni will be mainly out dated, as everyone learns part time, in stages, not necessarily at a certain age nor all in one go.    Things have changed, and the changes are equalising opportunity for disabled people.   When everyone works and studies from home, physical agility is not important 
  • KittyTinkerKittyTinker Member Posts: 77 Pioneering
    Thanks everyone for your advice and I have added some ideas to my list of questions when the disability department contact us. We do have a back up plan our local university is 15 miles away it also has an excellent PPE department and he has been offered AAA to study there which is the same as his first choice so if all else fails. I will be asking about the possibility of staying home for the first year if the current circumstances continue and it would be my dream for them to say he can continue accessing learning from home and perhaps travel down when necessary who knows the world might wake up to the reality that Technology can make life so much easier. 
    Many thanks
  • forgoodnesssakeforgoodnesssake Member Posts: 354 Pioneering
    edited January 28
    A couple of things come to mind: 1, don’t wait for the disability department/services to contact you... you get in touch with them ASAP! Sorry, that sounds a bit bossy and rude 😂...I just mean don’t ever assume that others will take the initiative because in our overall experience it is rarely the case! 
    And secondly, in case it’s useful to know, my son has been studying from home, remotely since last March as his department (maths at Newcastle) got their act together very promptly. I do understand though that courses which need library access etc might find that harder to do. 
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