University disability needs assessment - grrr.

[Bethabubble]

Hiya everyone

Long time no speak, entirely my fault but hi anyway!

I'm not sure if this is the right place to put this but it seems the most logical. I had my needs assessment for disabled students allowance 2 weeks ago and got the report through the other day. I'm really not very happy with it but don't quite know what to do about it. Some of the information is just plain wrong, but other things are a bit more serious than that. In the assessment the woman said she wouldn't be recommending a laptop because I did so well in the first term that my inability to write effectively in lectures obviously isn't disadvantaging me academically. That seems a bit unfair to me. It seems that if you're intelligent and work hard to over come your disability, they won't help you. She said that I should just carry on using my computer at home, and the uni computers when I'm there. She didn't seem to understand that I can't use the uni computers because every time I have to get up and move, I have to shut everything down and take everything with me. Plus there's the extra walking between somewhere you can eat and the computer rooms, and places to sit at uni are limited to start with. And what about the days like today where I've literally been in bed all day because I'm in so much pain. I can't sit at the computer for any length of time to get any work done because it just hurts too d**n much. I shouldn't be here now but I need to talk to someone about this cos it's really getting to me. The work is still there, and it still needs to be done, but I can't do it because I don't have access to a computer when things are this bad.

I spoke to my disability advisor about it and she wasn't very happy either. She thinks I should have a laptop and cited days like today as proof of that. The woman just didn't seem to understand how this condition affects me, and when you're in an interrogation like situation you don't always remember to tell them every tiny detail do you?

I've been told not to sign the report if I'm not happy with it, which I'm not so I'm not going to, but I don't know what to do with it instead. How do I fight it? Do I even have a right to fight it? The woman seemed to think I was just trying to screw the system out of more equipment than I need but I really wasn't. If I could get by with what I've got then I wouldn't have applied in the first place.

Has anyone been through this kind of thing before? I tend to muddle through things rather than making my life easier, but what I do with this report determines how difficult life is going to be for the next 4 years and I'm just not sure what to do with it.

Any thoughts?

Sorry for the ramble!

Beth xxx

[Mari]

Hello Beth,
I'm really sorry to hear about this - and angry for you too! What a horrid woman! It 's such a horrible situation to be in as it is - nobody wants to have to ask for help, and it's also a rather depressing experience to have to tell people how hard you find everyday tasks.
Many of us know just what it feels like to not be taken seriously, too.

I'm not entirely sure what to do, but I suggest
(A) is there a student pastoral support worker/counsellor or are you allocated mentors/tutors? There must be a member of staff for you to go to for advice. Put the problem in their lap and get them to find out what to do next.

(B) speaking to your Disability Advisor again. Isn't this just the sort of thing that they should be sorting out for you?

(C) contact a local Disability organisation. Look in your yellow pages, or look on the Internet for Disability Rights organisations. I don't know any links, and think of any examples right now, but others might.

Sending you big hugs!

Mari

[nonyanomemory]

Hi Bethabubble - I am just here to offer empathy, moral support and a big hug. I don't really know very much about this but it sounds a really stressful and frankly inacurate assessment. I agree with Mari - I think your disability advisor should be helping you out here.

I hope this is sorted out for you very soon and in the meantime I will be thinking of you.

Take care Nonyax

[suzannehorne]

I would contact your disability advisor and see if you can get the assessment done aain or reviewed. Was it Aberdeen College Access centre that you got the report done by? If it was I am sure that this is a name and address of someone from SAAS you can contact. If so contact them and see if you can get a re-assessment. I found it useful to bring along a doctors letter to the assessment. Hope this is of some help.

Suzanne

[nonyanomemory]

SAAS link

Just in case you need it Bethabubble - contact details in the link. If you click on support info in the left margin on home page - follow links through to disabled info which gives more contact info.

nonya

[Bethabubble]

Hi Mari

Thanks ever so much for your reply. Sorry it's taken me so long to get back to you, I've still been mostly stuck in bed. I did venture out today - had to go into uni for the meeting with my disability advisor (she said I should have cancelled - she's probably right!) - but I'm paying the price for it now. Feeling like someone is chiselling your knee caps off isn't pleasant! And my jaw has even decided to join in the fun now.

I keep switching between wanting to fight it (and not just the report, drs as well) because it's not right and shouldn't be happening, and not feeling like I have the emotional energy to do anything about it, especially not with all the work I've got for uni which I can't do at the moment. I feel like 'm getting so behind, and now I'm having to deal with this as well. Grrr.

Coreen, my disability advisor, would seem to fall under your category A. She really is fabulous and is the person I go to with just about everything, even above my actual academic advisor. She was really helpful today and has told me to fight it. I've gone through the report and highlighted everything that's wrong about it, and now I have to write a letter explaining. That's what I'm not looking forward to. The woman made me feel like I was just playing the system, so now I feel like anything I say is going to be perceived as me making things up because I didn't get what I wanted. At least Coreen knows it's not like that though. She really does seem to actually understand - it's very refreshing!!

It seems that all I can do is complain to the people who did the assessment and see what happens. I've been warned that they can be very stubborn and probably won't budge on this, but it's probably worth a go. The more I think about it though, the more I think that woman didn't know the first thing about HMS. She wrote in the report how I didn't get any support at school because of the HMS - yes, that's because I didn't have it then!! That suggests she doesn't even understand the criteria by which it's diagnosed. Now, if that's her starting point, how can she possibly understand what it's like to live with it? They're used to dealing with people with dyslexia or blatantly obvious physical disabilities - this isn't either. To all intents and purposes, I seem fine. But that's the tip of the iceberg isn't it? I've learnt to deal with it so I can seem like I'm getting on ok but in actual fact, I'm still in pain. Preaching to the converted here a bit aren't I?!

It's just a bit of a mess really and I childishly just don't want to have to deal with it. I wish there was someone I could get to deal with it for me but it looks like it's got to come from me.

I'm also heading back to the dr on monday to have a go at them and see if I can make them do something. I suppose I'll just have to wait and see what happens.

Thanks again

Beth xxx

[Bethabubble]

Hiya Nonya

Thanks for the support and the link. I had a look at it and it's helped see yet more holes in the report. I still wish I didn't have to deal with it but I know there's no other option really. This week has proved that only living a 10 minute walk from uni and having my own computer doesn't mean everything is fine. Those things are all well and good when you can move!!!

Part of me still thinks I'm making a big fuss and there are people out there far worse off than me, but also I've been doing very well at uni and I know I'm good enough to keep doing well. I want to come out with a first and there's no academic reason why that isn't possible. All that's in my way is this and why should I let it ruin my chances? I'm going to have to make people listen to me and see that everything isn't fine and it isn't controlled at all. I don't know how easy this will be but I've fought for so long to get to uni that I can't give up on it all now.

I just wish all those feelings translated into feeling strong enough to do something about it. I'm going to write this letter to the assessment woman though and possibly enclose some info about HMS because she obviously didn't know the first thing about it. At least my disability advisor is on my side, without her I think I'd be giving up on it by now! I'm not really expecting to get anywhere, I've been warned they are very stubborn, but it's worth a go. And in the meantime, Coreen is looking into what she can do.

On the plus side, Coreen's found me a cupboard at uni that i can put my stuff in so I don't have to carry it around. And it just so happens to be just about central to all my lectures. So there is a silver lining there!

Thanks again, you're a real gem.

Hope you're doing ok

Take care

Love Beth xxx

[Bethabubble]

Hiya Suzanne

I spoke to Coreen and she's finding out if they (ie uni) can do the assessment themselves. They're on a pilot scheme apparently but she's got to speak to Lucy to see if it's possible. So keeping my fingers crossed for that!

In the meantime I have to write to the college detailing everything that was wrong with the report. If they refuse to budge then I'm to get in touch with SAAS directly and see what they suggest.

The woman who did the assessment had the letter from my consultant in front of her, but blatantly hadn't done any research about the condition at all. I think she looked at me (it was a very good day) and figured I didn't look like there was anything wrong so there mustn't be. If only she'd seen me this week.

How are things going with the change over of your medication? Are you feeling any better yet. I'm going to the doctor on monday to shout at them (gently) cos I've had enough of this now. I've just been apathetically putting up with it for the last few months but these last 2 weeks have been silly and I don't see why I should take it. The only options I have for painkillers are anti-inflammatories that don't do anything, or co-dydramol which leaves me exhausted, unable to think and feeling very sick, and still in just as much pain as I was in to start with!! If it wasn't real it would be funny.

Anyway, I need to move, been sitting at this desk too long. I've got an essay to write this weekend and have no idea how I'm going to manage that. Still have to get into heavy demand to get the books!! And when I asked for an extension I got given 3 days. Bless her, she's usually very good but I think on this occasion she's missed the point a little!

Hope you have a good weekend.

B xxx

[Mari]

Hi Beth,
My goodness, you've got alot on your plate, haven't you?
I hope you don't mind me asking, but have you got support from your family? Sorry if you've told us before, I'm afraid I can't remember. But it sounds like you could do with some back up. You are having to take on an awful lot on your own.

Colleen sounds great, and a real support to you in uni.

Have you given your doc stuff to read on HMS before? (I expect you have.) Have you thought about asking for a referral to a pain consultant/pain nurse or to a pain management course?

Mari

[Retro]

Hi Bethabubble, have you tried the CAB welfare rights people? It's a long shot but they might be able to help.

Good luck and I hope it all gets sorted soon.

Lindsey

[Bethabubble]

Hi Mari

Yeah, a little bit! I do like to make my life as complicated as possible though, it's a habit of mine! I do have support from my family (my mum is slightly hypermobile and my little sister is more hypermobile than me but is only 4 and hasn't developed any problems...yet) but they live down in Northumberland. I live with my partner though and he's great. He's helping me write this report (which is oddly fun - I like having a go at people in a nice way, it's so unnerving for the recipient!). I've written 3 pages already and I haven't even finished the factual inaccuracies!

I haven't given my doctor anything on HMS, but I've recently changed doctors (the last one really didn't get it) and have only seen her once about it (I got bored with the whole process and tried to just deal with it o my own.) I may well take some stuff with me on Monday though and I'm definitely going to include some information in my report to the assessment people.

The consultant rheumy up here has a special interest in HMS, which is useful but he's not exactly a specialist. Ideally I want to be referred to someone who is but I don't know how realistic that is. I'd also like regular physio because the few appointments I had last year were really helpful. I'd far rather avoid painkillers if at all possible, but doctors like dishing them out, presumably because it's easier and cheaper than actually dealing with the problem!

I don't know anything about pain management but I know there's a clinic up here, or a course or something. I'm ready to go in all guns blazing on Monday though and not leave until I've got what I want!

Well, should get back to the report.

Thanks again

B xxx

[Bethabubble]

Well, I've finished my report in response to their report, all 3000 words of it. I've even included 5 pages of information about HMS as they blatantly don't know the first thing about it.

I think I may have been a touch too snide in places, but they really annoyed me and by failing to understand the definition of the condition they lost all right to be taken seriously in my opinion.

I was particularly proud of this bit:

'It appears that there has been a misunderstanding surrounding the definition of this condition and I therefore draw your attention to the enclosed information. Particularly, the diagnostic criteria...I would be grateful if your understanding of the condition for which you are assessing me could be reflected in the report you have produced, as currently this is not the case.'

A little harsh perhaps, but this is only the first draft, and it makes me feel better to write the odd slightly nasty thing even if it doesn't go in the final version. You get hit by so many people just not understanding and not getting it, that it's oddly satisfying to take it out on them and tell them what you think, even if it's just a paragraph in a letter which you then delete. Or am I the only person who does that?

Anyway, tis bedtime for me now. This is the first day I've been out of it for most of the week anyway and I think my adventurous trek around sainsburys was a little ambitious. Oh well, you live and learn and all that and at least it's sunday tomorrow so I have every right to stay in bed!

Take care everyone

Love Beth xxx