Anyone have a DC who has applied for Disabled Student Allowance or work as a Student Support person at Uni?

[bigbluebus]

Posted this in Further Ed by accident so have re-posted here.

DS has HF ASD/Aspergers. He has had 25 hrs 1:1 support all through school, although since he has been in 6th form, this support has been used at a distance (at DSs choice) with some 1:1 mentoring sessions thrown in outside of lessons.
DS has always tried to shake off his support as he wants to be like everyone else.
He has applied for and been given conditional offers for Uni which will involve moving away from home (no local Unis here). He has also applied for DSA and received confirmation that he is eligible, but the next step is he needs to go for an interview/assessment. DS is not very good at saying what he needs/what his issues are (he doesn't really think he has any) and I am worried that he will go along to this interview and say he doesn't need anything. He has already said he doesn't need any special equipment - I am assuming he will need a lap top but this is no different to any other student and although his hand writing is appalling, he has managed at school without a laptop or a scribe. Where he really struggles is with organisation. His notes are very disorganised (he has never used them to revise - he uses text books/revision guides and past papers) but when told by college that he needs to get his files in order her just says "I like them that way". I don't think he will get away with such shoddy notes/files at Uni and the course he wants to do is quite intensive.

Also, he has never lived away from home before and although he can perform basic housekeeping tasks, I worry that the stress of having to care for himself alongside the heavy workload of the course will leave him struggling to manage his time.

What I want to do, is help DS put together a list of things he might need help with at Uni so that when he goes for the I/V he will be clear about what he needs, but as he has not been to Uni (nor have I) I'm unsure of exactly what the sructure will be and what sort of help he will need. Or will the interviewer/assessor be trained to identify areas where he will need help and proactively offer that up rather than DLA/PIP interviews where they are actively trying to stop you getting anything.

Any help/advice from anyone whose DC has been through this process (or who works in this area) will be greatly appreciated .

Oh God, we haven't applied yet!
I'm trying to be 'hands off' with DS but it isn't working.

My DS has been through the Needs Assessment process. We made a list of things he may have difficulty with prior to the interview. I was actually allowed to sit in on the interview ( at a distance of course), but I think this depends on the assessor. Assessors are obviously trained on things that are available to help a student with disabilities at university. During the assessment my DS got to try out various computer programmes and other bits of technology that might help him. It was very straightforward. The only part we both found strange was that the assessor kept asking about what he would find difficult in a lecture hall of 150 people and phrased the question in such a way that she thought he should have been in this situation before. Then she was annoyed when he answered that he had never been in such a large lecture hall, although because our list he was able to say he imagined..... However, I think on the whole the assessors are proactive and do their best.
DSA is changing this year I think. So do make sure you look at the up to date assistance that can be given. For my DS his help is divided into consumables, personal assistance and then technology. Each has a separate budget. Personal assistance could include note takers, mentors etc
Good luck to your DS OP for his exams and don't worry about the assessment they are there to help!

tough His 1st choice Uni sent him a Disabled Student Questionnaire on which he ticked that he needed an en-suite bathroom. Also if he meets his offer, he gets a free up-grade to en-suite anyway so don't think that wil be an issue. He has used public transport here as LA dropped his place on designated mini bus when he went into 6th form (non compulsory education). We decided not to fight it and see it as a move towards independence and tbh it worked fine. He has also caught the train by himself so as long as he can plan travel in advance he will be fine with that.

missdemelza It was his mentor at 6th form that got the ball rolling on his application forms so he had no choice really . I didn't need to get involved at all until we got a letter saying there was no proof of diagnosis in the paperwork sent from college and they wanted a medical form signed by a Healthcare professional involved in his care. As he was diagnosed at age 6 and has had no healthcare input since, I got involved in writing an explainatory letter and sent a copy of his diagnostic assessment which they accepted. Obviously his needs have changed greatly in 12 years . I had a friend who was dislexic and applied as a mature student for DSA. I'm pretty sure she didn't apply until she had actually enrolled at the Uni and had her assessment there. Her needs are obviously very different from my DS though.

Thanks going. Your example is exactly the sort of thing I was thinking about. It will be a very different environment to 6th form so how does he know what he can/can't cope with if he has not been in that situation before.

He has actually been in a lecture theatre full of people (thankfully) as we went to some talks on the open days. It was me that couldn't cope in there - it was a warm day and there was no air conditioning.

I'm not sure about his assessor. We are looking at going to a centre which is a branch of a bigger Uni but is the medical/nursing faculty - so based at a hospital. Not sure how much experience they will have with someone with ASD.

Glad to hear that the assessments are there to help. After years of applying for Disability Living Allowance for DD, I am very cynical about assessments.

My son went through Needs Assessment 2 years ago (ADHD). Like you I thought he'd not have a clue how to explain what he needed to be successful, particularly in the first term where I thought that human support for organisation would benefit him.

The needs assessor he saw (and others I have met through work) are well used to eliciting info from students, particularly those, like my son, who are reluctant to accept support. My son's package of support for adhd was spot on and still appropriate as he has progressed - in second year now having done 2 first years- no bad thing in my view as his first first year was a bit tricky (but lots of fun for him!)

Why not give the assessment centre a call to ask what the procedures are so that you can go through it with your son (if he'll listen to you!) and reassure yourself? They won't discuss specifics in relation to your son but will reassure you about procedure.

The aim appears to be to allow students to develop sustainable skills for study - so less of the human support like scribes etc but rather voice to text software, voice recorders, assignment planning software, extended loans at the library.
Study skills support seems to still be quite common so he should be recommended this.

One thing I did check with student services at the university -before I got back into my helicopter to fly home- was to check that they were aware of the access arrangements for exams recommendations. They were and it's all gone ok...

Thank you littleTuesday. Glad it is all working out well for your DS. I sniggered at your ref to helicopter - I assume that is a ref to your parenting rather than your actual mode of transport-. It made me laugh as DSs 1st choice will involve a plane journey or long boat ride! Nothing like cutting the apron strings

I have just been doing a bit of Googling and found some useful pointers from Cardiff Uni (not where DS is going) and also NAS. They both mention the study skills and recording equipment (although DS insurance option makes all lectures available electronically anyway - but not sure about his firm as I didn't go to the Open Day for that one).

I get the impression that Unis are generally more geared up for this sort of thing than many schools. His 'firm' Uni choice had sent him a disabled student questionnaire as soon as they made him an offer.

My DS got DSA for dyspraxia and I must say uni has been magnificent. Free laptop and printer, offer of a lot of 1 to 1 support (which annoyingly he has not taken). But the best bit for me was that he got a disabled room where everything was bigger, and easier to cope with. And when they had fire alarms etc in the early days, someone would come along and guide him out (no sense of direction, always getting lost ...). They also copied me in to all communication so I knew what was going on although I didn't need to intervene. Now a third year and living out very happily and I don't really think anything could have been done better. Another thing ... at the beginning of modules, tutors have emailed him to ask if he's happy with the way things are being done/could anything be improved. Am very, very impressed ... unlike school which was totally useless.

That sounds good moomin. Glad it's all going well for your DS. I can see the same problem with the 1:1 support with my DS. He has spent the last 13 years trying to shale off 1:1 support

shake not shale.

We're in the early stages of applying too, but I'm hoping the good friend who's guiding us through the process won't mind me pasting some bits of her latest email here:
The DSA funding means that X has a professional mentor (someone with counselling & Asperger’s knowledge) and he meets with her once a week. He gets on very well with her and has been meeting her since Fresher’s week.

He also has funding for a subject specialist mentor -- he meets with a [subject] PhD student regularly and says he has found that really useful as this student has helped him to plan his work load better (and do more reading!), so he is not feeling so stressed as deadlines are looming.

He also has funding for study skills support and the uni provide that through lectures/seminars to a number of students every other week. It includes such things as note taking and exam preparation. X has found these sessions useful and has liked the fact that he is anonymous amongst a fairly large group of other students.

From X's experience, it can certainly be worth it and the support he has is extremely discreet, so he has not had to disclose his diagnosis to anyone, especially his peers.

That's extremely useful Lancelottie. That sounds like exactly the sort of help that DS would need.

Godd, I'm glad it helped! DS is similarly inclined to tell people he doesn't need help despite a 32.5 hour a week statement (sigh).
Now if I can just persuade him to Make His Final University Choice, we could get cracking properly. Sigh again.

My DD is dyslexic and Dyspraxic, but used to muddling along with so so support at school (apart from some teachers who really went the extra mile, though few and far between ). Her DSA assessment was a really positive experience, she actually came out buszzing because she felt someone really understood how hard she has worked to get this far. They were definitely proactive in suggesting and authorising every bit of equipment they felt could help, I am sure she would not have been able to list it in an interview even if she had known about it all. She is studying English Lit though, so the problems with dealing with the volume of reading and essay writing are fairly obvious.

Worth applying as early as possible as there is a lead time on equipment and it would have been handy to get it before term started.

Thanks from me too - very useful info as Ds is just about to start the process of applying for DSA

He's convinced he doesn't need extra help but he certainly wouldn't have got this far in mainstream education without his school going above and beyond for him (he has the highest level of support that our LEA will fund in a mainstream school so I am slightly trepidatious about the thought of that support suddenly being cut off)

DD3 is 23 and in year at university doing a computer degree, She has dyspraxia and other learning difficulties. she applied for DSA before she went to uni. When she went for her assessment I was actually allowed to go with her. At that time she found it very difficult to speak to people she did not know. She did manage answer the assessors questions but needed me there for moral support. Anyway she got a laptop and printer, software to help her proof read, Dictaphone for recording lectures and a support worker for an hour a week to help her organise her work. She is also allowed a computer and 25% extra time in exams. The disability team at her university makes sure all here tutors know about what she needs and they also provided a human proof reader if she needs one.
She did take some persuading to apply for DSA at first as she like your DS basildonbond thought she should do stuff herself and not have extra help. We explained she is still doing her degree herself but just needs a few things in place the same as a physically disabled student would have to help her to do her best. It helped that when she went to university she actually discovered other students had DSA.

I am a mature student (30s, married, 4 dc etc) and have been through the process of DSA and assessments etc. This may be long, sorry

I am Bipolar, which I had to provide medical evidence for, this was just a signed letter from my GP. I applied after I had started uni, the first year I struggled through not realising help was on offer, but second year (which I have just finished - yay!) I have been quite ill, mentally, and accessed student services when I started the year.

They filled in the paper work for me, they arranged an appointment with the assessors, and they put in place things they assumed I would be awarded the DSA for before I had even gone to assessment. For me the options on site at uni were mentors, scribes, note takers, and work facilitators, this was all in addition to the usual academic support everyone can access like writing workshops and the like.

I chose a Mentor, though I could have chose all the options had I wished. I see her for an hour each week and we plan workloads and assessment timetables (often she gets hand in dates moved for me to create an even spread across the year - worth its weight in gold!) She also acts an advocate for me contacting individual tutors in the modules I take and informing them of my condition and any reasonable adjustments they should make - sending me the power point in advance, allow me to use recording devices, and things like that.

The assessment was not what I expected at all - I honestly thought I would have to 'prove' how mental I was or something. Its not like that - they are there to make sure you get the absolute maximum you need. They gave me programs for the computer for mind mapping, speech to text, text to speech, a live scribe pen that digitally records the writing I do, and can record sound, so the lecture, at the same time, a Dictaphone for recording in large lectures. They supplied a laptop as mine wasn't good enough to support the programs they gave me. They even sent batteries and battery chargers and extension leads in my pack! It was like Christmas!

They ran through the 'people' options, like uni already had, and were happy to fund all the services if I wished to have them, but I stuck with just the mentor as I didn't want to many extra appointments with other people, busy enough as it is!

They asked if I needed any help travelling, or if a free parking permit would make things easier, (these didn't really apply to me, but the offer was very much there). They also give me £300 a year towards books/paper/printing.

In the report they send to the uni it specifies the reasonable adjustments they should make to even the playing field for someone like me. So things like unquestioned extensions and moving assessment due dates to offer an equal year, extra time in exams, (actually they have given me take home open book exams) having access to power points and before the lectures along with any hand outs that are to be given, being allowed to use laptop/recording devices (some tutors are funny about this until they have the nod from student services saying its required.)

At the centre I went to they seemed to match the assessor with the needs of the student, so I had one experienced with mental health issues, my friend had one who solely saw dyslexic students. I don't know if that works the same at all centres though.

I hadn't known what to expect, but at least I had already experienced uni environment to be able to properly answer the Qs, I imagine it would be harder to do that without the experience. That said, my assessor was lovely and very much 'on my side' and ran through many scenarios and options that are usually offered and how they work and then worked out a 'best fit' for me.

Sorry that's so long, it has been a really positive experience for me, I hope your DS accesses the services on offer as it can make such a huge difference. But, even if he doesn't in first year, he can always go back for a re-assessment if he wants to.

Thanks for sharing your experience babydubs. It is good to hear that the DSA assessment and the help it unlocks seems to be a positive experience.

Reading these posts, is anyone else wondering why so many parents have to fight to get their DCs the support they need in school when clearly Higher Education has it 'sorted'?

Not quite the same, but DD is Coeliac and her Uni have supplied her with an extra freezer so that when her prescription for bread arrives (8 loaves) she has room to freeze them all. Very impressed.

My DS1 has his DSA assessment tomorrow (inattentive ADD). I am allowed go with him, all of the above has been very insightful and reassuring. The only thing is, he still hasn't firmed as he is toggling between two choices, as he is worried he might not make one of the grades for his offer from his (original) first choice uni. Does anyone know if he has to let the assessors know for sure which uni he has chosen, at the assessment?

serendipity we had to put a university down but were told that there was no problem changing it later.

I went through DSA assessment earlier this year (I'm a first year) and the assessor went through everything that could be useful to me. Mine is mobility related but they offered me various technology & book/printing allowance as well.

There is supposed to be big changes this year but I'm not sure what they are (assuming it's cuts) but they've been challenged once already. www.cypnow.co.uk/cyp/news/1149556/deaf-student-challenges-proposed-dsa-changes

I've only printed the paperwork off today.

I work in a disability service at a uni which includes a needs assessment service so happy to see if I can help.

Basically the aim of the needs assessment is to discuss with the student what their experience of their condition is, what support they have had/has it worked for them previously and what their course requires. We can then identify any potential issues and suggest support and solutions. we write a report which goes to the funding body to approve and pay for.

Recommendations are as said above equipment based (computer, assistive software, recording kit); non medical helpers (note takers, study skills tutors, specialist mentors for conditions such as MH issues or AS); travel and general stuff like accommodation in some instances.

The big change this year is that there will be less free computers. If a computer is recommended the student has to pay the first £200. There are other things but this is the biggie from a student perspective

That's useful, Tweak. Luckily DS has bought his own laptop already from cash he's earned, but things like mentoring and help or advice with accommodation would be great.

He sleeps very lightly and badly -- would 'quietest room you have, please' be an acceptable request to a university?