Student starting HE who have disabilities, additional needs, mental or physical health issues -support thread

[NoHaudinMaWheest]

I find general support threads very useful but there are additional issues when our dcs have needs beyond the standard. I thought that it might be useful to have a place where we can discuss our concerns, pass on tips and information and support each other.

My dd is (results permitting) starting a degree at a university hundreds of miles away. She has mobility and chronic pain of unknown origin, ASD, mild dyslexia and a variety of health problems,
none of them serious but adding to the complexity.
We have had her needs assessment but it has needed some tweaking so isn't finalised yet. She has also done a transition course for students with ASD which has given us a chance to see what the difficulties might be and put some plans in place.
I am still terrified of how she will cope though.

For context I also have ds (ASD, OCD, dyslexia, hypermobility) who has been away at university for two years. He has struggled a bit (a lot at times) but the disability services at his university have been very supportive.
Anyone with dcs already at university or studying themselves are also very welcome. (So that we can pick your brains!)

[Somewhereovertheroad]

Also she can apply for PIP which isn't easy to get but may help a little.

[NoHaudinMaWheest]

There are two routes for help at university.
One is Disabled Students Allowance which is administered by Student Finance for the country of the UK you live in. You apply for it at the same time as the Student Loan. They will ask for medical evidence of your condition(s) and then ask you to go for a study skills assessment of your study needs in relation to your disability/ies.

There are assessment centres at most universities and higher education colleges so you can choose the most convenient for you. The interview is very thorough and will look at all aspects of how your conditions may affect your university course. The assessor will then write a report outlining their recommendations for extra support.
This will be sent to Student Finance and to the relevant university.

Student Finance will fund some of these recommendations in the form of Disabled Students Allowance.
The things that DSA funds are usually contributions to a laptop and appropriate software and training to use it; mentoring or study skills tuition; printer and printing costs; in limited circumstances travel costs.
You might think most of this is not relevant to your dd but the assessment should take into account how she will cope if she needs to miss classes because of a flare up or if fatigue makes it more difficult for her to use library printing services or to travel to the campus, for example.

The assessment report may also make recommendations for things that the university should fund. It might suggest that the university covers the additional cost of having an ensuite room for example. However it is not mandatory for the university to do this

In addition to the DSA route, there is the university's own disability services.
You can contact them at any time and discuss your needs. If your dd is going to any offer holders days it is worth contacting disability services and asking for an appointment then.
They can advise about things like getting extensions on assignments if this is necessary; exam arrangements (e.g. extra time or toilet/ rest breaks); and support in approaching her academic department about any necessary adjustments.
You would also need to approach accommodation services about getting an ensuite room or any other accommodation needs. For example many universities have quiet flats or halls which she may benefit from if she needs to sleep/rest more to manage her condition.
Accommodation services will give priority to those with disability/medical needs but having back up from disability services is helpful and sometimes essential.

The sooner you start these processes the better. Once she has made her firm choice you can set the ball rolling. It is a good idea to approach disability and accommodation services at the insurance choice too. The DSA can be transferred to whichever university she ends up at.

If you leave getting a DSA assessment until after exam results your risk not having everything in place for the start of term.

Sorry that is a real essay. If anything isn't clear or you have more questions do ask.

[ProfessorLayton1]

Has she been registered with the local hospital and you can ask her to email or ring the helpline if she has been referred to the local hospital.
She can speak to IBD specialist nurses and get advice regarding a lot of things....
Pm me if you need any further details

[Somewhereovertheroad]

Sorry wrong link ...try this one https://www.crohnsandcolitis.org.uk/news/freshers-checklist

[Somewhereovertheroad]

Really hoping this link works https://www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/students-with-ibd-a-guide-for-universities-colleges

I would started with reading this.

[christmaschristmaschristmas]

Hi, can I ask for some advice.

DD is going to university (health and grades permitting in September).

She has IBD and has just got over quite a severe flare up

What help would she be entitled to at uni? What questions should I be asking?

The only obvious one I can think of is she will need an ensuite.

[NoHaudinMaWheest]

Good news about your sister's appeal. I can't decide whether I have the mental energy to do it or not, but dd is keen as she feels that the ASD issues need to be recognised.

Good that dd has got her equipment. I hope it hasn't been too detrimental coping without it for such a long time.

[Somewhereovertheroad]

@NoHaudinMaWheest It does appear with PIP that rejection or downgrading is the default and an appeal is necessary.

Dsis got hers upped on appeal this week.

The appeal is incredibly mentally draining.

In other news Dd has eventually received her DSA equipment and is receiving the training next week.

[NoHaudinMaWheest]

Reviving this to see how everyone is coping with a new term and, for some, exams.

I also have a personal reason. Dd's PIP renewal has come through at last (8 months since we were first sent the form). She has still got higher rate mobility but her care has been reduced to standard ( 24 points down to 11). Essentially they have ignored all the needs that come from her ASD and she only still gets it for her physical needs though they have not all been fully accounted for.
The award is only until Oct 2020 which means we will have to start the process again at the end of this year.
I am swithering about whether to appeal, mostly because if they have reduced it so much this time, what will happen next time and also because of the length of the award which is ridiculously short.

[HardwickWhite]

So, DD's friend told her what was going on, and DD is actually quite circumspect about it all. I suggested that if she was concerned, or didn't know what to say/do then her mentor might be able to give her some informed advice, and she thought that was a good idea.

DD is home for study leave in a couple of weeks, so perhaps she will be able to go and visit her friend (in-patient, and likely to be for a few weeks yet).

Oh my, I wish it was Christmas already.

[NoHaudinMaWheest]

That is hard hardwick. Hopefully she will talk to you or agree to talk to her mentor.
It is always possible to give information to disability services even if they can't give information back. They may well think it is appropriate for her mentor to know that information. I am pretty sure that the mentors have supervision sessions.

[HardwickWhite]

Thanks. She may well talk to us about it, because she will know we know, and she knows we care about her friend. They have been friends since YR, and her friend's problem is long standing. I'll see how she goes over the next day or so, and maybe suggest that her mentor might be a good person to talk to about it, next week.

Thank you.

[Stressedoverkids]

It's possibly worth a try. I would think the worst they can say is "Sorry, we can't do that."

Is it likely though that she will phone you if she's upset and you can talk through support strategies with her?

[HardwickWhite]

I'm in a bit of a quandary.

DD is going to hear some bad news about a close friend. The friend's mum has asked me to let DD hear about it from the friend rather than me iyswim. I'd like her mentor to know that she may need someone to talk it though with, but can't ask DD for her mentor's contact details without making her worry something is afoot. Would disability services pass on a message do you think?

[NoHaudinMaWheest]

Oh no! Though it is always a tough call knowing how much to intervene.

[Stressedoverkids]

You are quite right NoHaudinMaWheest they had apparently written to Dd a month ago requesting confirmation of enrolment and she hasn't sent it.

I am trying to take a back seat. With mixed results.

[NoHaudinMaWheest]

I would chase that up stressed as I think we got the letter within a couple of weeks and six is excessive.

[Stressedoverkids]

Thanks Hardwick. Yes the Uni have the Mentoring in place and have provided the software training but no letter of entitlement yet.

It's six weeks since we got the report from the assessment.

[HardwickWhite]

DD had already made contact with disability services at the uni, so that end was quick. She had only just received (two weeks ago) the hardware though. The uni being proactive meant her mentor being in place and her personal tutor knowing was in there from freshers week.

[Stressedoverkids]

Dd still hasn't received any of her DSA support yet. We have had the assessment and a copy of the assessor report but nothing since.

The report was received about five weeks ago. I was wondering how long your Dc were before they got assistance as Dd is struggling.

[NoHaudinMaWheest]

Thanks hardwick.
It is a shame your dd's exams go on so long as it has indeed been a long term. My dd finishes the week before which is a relief.

[HardwickWhite]

I hope your PIP interview goes well NoHaudin.

DD got her exam dates yesterday and she will be there till a few days before Christmas, I hope your DD gets finished earlier - this is such a long semester for them!

[NoHaudinMaWheest]

Hardwick sorry that it was a rather tough week. Maybe when she is home for the weekend you will get a better feel of how she actually is. It may reassure her about her friend too (if that is possible of course).

I am going up tomorrow. Dd has her PIP interview on Thursday which we are both dreading. It will be nice to see her though.
I will also see my mum who has injured her leg. She is, as usual, making light of it but it will good to see for myself how she really is.

[HardwickWhite]

Well it was a strange old week. To start with, I think she was excited to see us all, and was very happy. Then unfortunately she had some bad news about a friend, and resorted to monosyllabic answers to questions, and staring at her phone constantly. I'm hoping it was a perfectly reasonable reaction to something upsetting, but I didn't handle it very well and ended up in tears in a naice restaurant on our last evening together.

She is coming home for the weekend though, which I am so pleased about, even though I suspect it is so she can go and visit her friend (which is a good thing).

[TheThirdOfHerName]

HardwickWhite I hope the visit goes well.

I just spoke to DS on the phone; he was on his way to the food court so only had five minutes. Instead of having a relaxed chat, I ended up going into professional mode and trying to do a brief wellbeing / health check, so he probably felt like he'd just had a phone appointment.