University Support

[Mumble]

I'm just wondering if anyone has any experience of having support implemented following the award of the disabled students' allowance (DSA).

 

I was diagnosed AS and dyspraxia at the beginning of February. I had a needs assessment at the beginning of March with an AS/University specialist. Following this, I received a long detailed report which gave specific recommendations for support, in particular 6 hrs of mentoring and 2 hrs of specialist tutor support a week. Funding for the support recommendations was agreed, and it went to the university's disability office for implementation. I have heard nothing else - I wouldn't even know that funding had been agreed unless my supervisor (who will be providing the tutoring element of the support) had shown me the letter sent to him. I don't know what to do now - I haven't had any contact with my disability officer since before my needs assessment - I think she was cross that I asked to have my assessment with an AS specialist and not the university's dyslexia specialist they always use (I don't have dyslexia, but they don't have experience of students with AS). I've since sent emails and tried to have some contact with her and to find out what is happening with my support, but I have had nothing from her - she is completely ignoring me. I spoke to my supervisor (because I think he is keen that I get support, and I'm worried about being a burden on him) and he tried to contact the disability officer, but she has just ignored him too. This has gone on now for two months, and in the meantime I feel that I am gradually falling behind without the support I need.

 

It took a lot for me to accept that I needed support, and it is something that terrifies me, particularly in terms of meeting and getting on with new people. I am now so cross that having worked to overcome a bit of my fear at least to the extent of agreeing to support, nothing is happening.

 

I've got a lot going on in college at the moment and many aspects of my course to consider at once and I'm not coping at all well with everything - I can feel myself becoming totally mute and withdrawn from everyone and this isn't something I want, because I am not going to succeed if this continues. I'm not coping in my lectures/seminars to a great extent because of language issues - in a way I need someone to 'translate' for me (if this makes sense) and to help me to know when to contribute and when not to, and it is this sort of thing that is written into my support. I need more time in my individual supervisions to think about what I am asked and to have things explained differently, rather than have my supervisor answer for me when I don't answer quick enough - half the time I'm thinking about his last question and I miss the question I'm supposed to be answering. This morning, my supervisor kept going on about the need to be quick because he had another meeting, and this just made me very anxious, so I didn't say anything.

 

I've got another conference coming up a week today, which I am absolutely terrified about, but I have to go and the tickets have already been paid for. At one I've been to I ended up lost in the middle of Manchester and at another I ended up having a meltdown at a large railway interchange because I couldn't cope with the pressure of doing social, having to wear clothes I don't like wearing, going somewhere I don't know, meeting people who have seen me before but I have no idea who they are (I have huge difficulty remembering faces or names) who then think I'm rude, coping with people asking me questions and having to join in discussions. I'm already not sleeping and ending up in tears worried about this, so I'll be a complete wreak by next Tuesday. It's written into my assessment report that I should have someone with me to support me with the journey and the conference, but this support just isn't happening and so I will be left to cope alone. My supervisor hasn't even said anything about it - I think he was shocked by me in meltdown last time and so is probably going to avoid me by travelling on a different train and talking to other people there. I don't want to be a burden on him anyway. I've also got to go out soon and start my field work, again without any support.

 

I can't even cope with trivial things like the accommodation problem I wrote about before - I've been blamed for the problem because the butts are outside my window and I got sent a letter about fire safety and needing to be careful - I can't get anyone to understand that it's not my fault - it's almost like they think well they have to blame someone, so blame the person who finds it difficult to defend themselves and instead retreats into their room and just accepts the letter about all the consequences that will happen and the fine. I don't have accomodation from mid June, but I'm too scared to ask the residence office, so I'll probably be homeless which then means I can't do my course - I need support and I don't have anyone. The woman who was my tutor last year on a different course has made herself my sort of tutor this year, but PhD students don't get a tutor, just a supervisor. I find the woman who thinks she's my tutor very difficult - she thinks she understands AS which makes it harder becuase she's not trying to understand me. It's either full doing everything or no support with her - the thing is I don't want to be ungrateful, but I don't want someone to lead my life for me, I want someone to help me to lead my life independenly.

 

I don't know what I'm supposed to do to get the support I need. The only person I talk to much is my supervisor, but even sometimes like today he seems more distracted by other things. It annoys me that the support has been agreed but isn't happening. I thought getting funding would be the most difficult and I don't understand why implementation is taking so long. I don't know whether to tell my supervisor that I'm scared about next Tuesday's conference or if this is then putting a burden on him to help me which I shouldn't do.

 

Mumble.

[lynda4]

I'm going through a very similar experience myself, or rather my son with AS is and I'm supporting him. We made the mistake of letting them ignore us, stall and make excuses for far too long. He's just finishing his 2nd year and still hasn't got the support he needs. You're in a stronger position because you've got the hours specified on your Needs Assessment, we couldn't get our Needs Assessor to do that, she just stated all the various things he needs help with, which obviously amounts to a lot of help but they won't give it. In this 2nd year we've had the Needs Assessment reviewed and this time she's said that he should have much more support, up to the amount of the grants available and possibly beyond but still he has very little because she hasn't specified the hours and I think they're using that to avoid giving the support. Anyway, its got to a point where we can't cope any more, him with the situation and me with supporting him through this situation! Finally we've got advice from the Disability Rights Commission and we're going down the legal route. Before we get to the court part, we can go to conciliation/mediation and hopefully it will be agreed there, if not it'll have to be court.

 

I think the main problem is that the universities just aren't geared to supporting AS students, don't really understand their needs and haven't yet realised they have a huge number of AS students, who are well supported and making their way up the ladder to university in the near future! Ds has been one of the first with AS in every mainstream school he's been to and now it's at this stage and its still the same because of his age. Behind him though, are so many kids with AS who've been through mainstream with support and will be ending up with A-levels ready for uni. Things will have to change but they haven't at this stage of education yet. Some unis are better than others but not many have good support yet.

 

If you browse through the Disability Rights website you can find all sorts of useful info and your rights in law. You can ring them and ask for their advice and they're very helpful. If they have refused you the support you need, they could be accused of "not making reasonable adjustments" reasonable adjustments being the vital phrase in law. In our case the uni's version of what is "reasonable" is far from ours! Because there haven't been that many students with AS supported through uni, I don't think there's a previous case you can quote and as you know, everyone with AS is different anyway. So you would have to go through the process and unless they comply somewhere along the way (which they may well do) you'll have to let the court make the decision of what's "reasonable".

 

We've had ther same problem as you, stalling by saying they're still thinking about it, for weeks and weeks on end. The Disability Rights people say this is "not making reasonable adjustments" just the same. What you will probably need to do is send them a formal letter to ask them why they haven't made the reasonable adjustments you've asked for and which are shown on your Needs Assessment. There's a template on the disability rights site, link below. This gives them 14 days to reply and might be all it takes to push them into putting the support in. If you have to go further, Disability Rights will advise you all along the way. I'm linking you to the section on the site for people in higher ed but if you browse, you'll find their contact details.

 

http://www.drc-gb.org/your_rights/educatio..._education.aspx

 

 

I think you have a strong case. This is like Statementing all over again, but like Statementing, if you're in the right and can fight your case, you should get what you need in the end. It's always harder to be the first ones to change the system but its possible and very important for the other children coming up in years to come. First step, give Disability Rights a ring, good luck!

[pearl]

Big <'> to both of you, Mumble & Lynda. Wish I could help.

[Kathryn]

Hi Mumble,

 

Although my daughter isn't at university, I hope she may be one day, and so I read your post with interest and I can identify with some of your problems because of the struggles she's having at college to get the right level and kind of support. She too has come across staff who think they know everything about AS - in my opinion, this is worse than complete ignorance.

 

Can't add much to Lynda's brilliant advice, except that you've described the problems you're having so clearly here: it might help to print out this post and use it when you need to explain your situation to anyone.

 

Good luck with pursuing this - I hope the university wake up to what they should be doing for you - and soon - so that you can concentrate on your academic work. <'>

 

K x

Edited May 15, 2007 by Kathryn

[Mumble]

Thanks Lynda for your advice and the link to the DRC website. I can't ring them up (I have a problem using telephones - this is in my support too) and I'm really worried about doing anything. My university, apart from these problems, is excellent and I am generally very happy there (well much more than in school). My department, particularly my supervisor, have given me huge amounts of informal support and helped me in getting my diagnosis, but it's at the point of them not being able to give me much further support without external support and funding. Given that this funding and support has been agreed by my funding body, I don't understand why my disability officer is doing nothing to implement it; it seems like a waste of money, because the funding is with the university - it just needs to be used to give me the agreed support. I would be really worried about making anything formal because I don't want to cause problems for my university. I think the problem is that they haven't had an independent AS student before (the other 2 lived at home, I think) and don't seem to understand.

 

I don't know whether to send another email to the disability officer, even though this will also probably be ignored. I don't know if I should speak to my supervisor - I don't know if he knows how unhappy I am about this and how worried I am about next Tuesday - I had a nightmare last night about the conference and woke myself up in tears and really fearful - and now I'm feeling lously today because I couldn't get back to sleep.

 

Kathryn, thanks for your comment on staff who think they know everything - I totally agree but I find it difficult to find others who do - even on here I've felt that others think I should be grateful that she's finding out everything about AS - it's very difficult to explain that it's not that I'm not grateful, but that I need individual understanding and the acceptance that there isn't a norm to AS.

 

I just want to focus on my academic work. I don't want to make a fuss or cause problems, but I don't know who to approach without making this formal.

 

Mumble

[lynda4]

I'm so sorry you feel like this, it shouldn't be happening to you. I understand how you feel and especially that you don't want to make a fuss or do a formal complaint. We felt the same, also that we were afraid that if we complained and he stayed on there, they might not treat him well afterwards. I do think though, that sometimes they rely on people feeling like this and not complaining. On ds course, lots of students dropped out last year and without my extensive support, he would have had to as well. Without me helping him so much, there's no way he could have stayed so long at university, I'm sure lots of students whose needs aren't met will just leave rather than have the hassle. This is a terrible thing to happen, which both upsets and angers me and the worst bit is, if it continues like that, things will never change.

 

I don't want to push you into doing anything you're not comfortable with but I'm worried that if you don't do anything, they will just take the easy route and leave things as they are. We tried being nice and co-operative for well over a year before we decided to take it further and in that time ds became quite ill with the stress, me too, and so now taking this further is so much harder for us, as we're both at the end of our tethers already. If I had to do it again, I'd definitely do something sooner rather than later. Incidently, our LEA has agreed to fund ds support - with us, as with you, its the uni who aren't putting the support in.

 

 

Though the university has been good to you so far, they aren't being good to you now. If you really need this support to stay at university and you just let it lie, I'm afraid that it could be harder for you to fight for it later on if need be. Disability Rights have email contact as well, so maybe you could email them? I know a lot of people don't like using phones, one of my sons is like that and a good friend of mine, so I'm sure the Disability Rights people will have come across that before and will help you in that way.

 

http://www.drc-gb.org/contact_us.aspx

 

They can probably advise you on how you can make an informal request, or complaint instead. The only thing is, I was told that there are timelines to making a claim for Disability Discrimination (leading to conciliation or court) and you have to get the whole thing done within 6 months of their discrimination or its too late to claim. We are only just within the timeline ourselves, based on his Needs Assessment being reviewed recently. Be careful to keep this in mind,just in case you can't get the help through the normal channels.

 

I do think you should contact your supervisor. At that point you could also mention to them that you're worried the support won't be put in at all and ask who else you could talk (complain) to, to try to get things sorted. If you're feeling up to it and the right moment comes in the conversation you could say you're considering "taking it further" or "going to conciliation" or "making a formal complaint" etc etc as its affecting your mental health and your studies. If that's true, you migt even get a doctors note to back you up. Whatever you do, please don't do nothing because your uni sounds so much like mine, that I'm afraid if you do nothing, they'll do the same. All through ds's mainstream schooling, there have been people who have a job that they should be doing and for one reason or another they aren't. Its probably got a lot to do with money, that their workload is too great for them to cope and they either forget or help other people who are 'shouting louder'. The quiet, reasonable ones are the ones who get left. I think its possible to complain nicely, to be strong but point out that its been * weeks now and you very much need the support.

 

I would also suggest that from now on you put everything in writing. By all means talk to the supervisor or whoever you have as a contact, but follow it up with an email to back up what you've said and make sure you keep a copy. I know its not nice to have to do this and you'd rather think well of people and trust them to do what's right, but over the years with ds and his support, I've discovered you should always have written back-up because people don't always tell the truth, they 'forget' things you've said to them and that they have said to you and you have no proof of anything later on. If you put things in writing, both sides have a copy so there can be no misunderstandings and if, in the worst scenario, you do have to go to court, you'll have your times and dates easily to hand and written back-up of all the things that have happened and been said.

[Canopus]

I have been thinking this through for the past few days, before having a discussion yesterday with my psychologist who works in a university. He thinks that universities provide naff all support to students with AS, and what little they provide tends to be supplied in lectures. The reality is that students with AS rarely need much support during lectures (other than the lecturer using a teaching style compatible with the needs of the student) but need the support in between the lectures. A high proportion of the support will be for domestic matters and explaining the university "system" rather than academic help. We both agreed that the students who end up with the best grades are those who know the "system" rather than those with the intellect.

 

A plan was devised to establish an AS support centre at my psychologist's university that will provide support and advice to students outside of lectures. He claimed he has some spare money in his department that has to be spent and setting up the support centre will be a brilliant move.

[Laz]

Can I ask what the universities are that people are referring too?

[CEJesson]

Hi Mumble sorry I didnt find this thread earlier.

 

I am currently in the process of having everything sorted DSA wise. My LEA has entitled me to the funds but I had my assessment back on June 26th and it took until August 23rd for them to be granted. This was not the LEA's fault in my case, it was the university academics going on holiday which delayed my assessment report being produced, as the assessor needed lots of information from them.

 

I do hope your DSA progress is much better than when you first noticed major problems. I am still awaiting news about a mentor/support worker (3 hrs per day for first 3 weeks then 3 hrs per week after that) and yesterday I ordered any equipment agreed in the report.

 

For me, apart from my course tutors being a bit slow, the DSA has been quite trouble free. However with cases that are problematic I can totally understand, as its a very complex process and always looks like there might be a hiccup at some point!

 

Chris