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!)

[NoHaudinMaWheest]

Hardwick guessed right then.
It is my former university so I am a bit biased when I say it is a great place to be but it is still true.

[TheThirdOfHerName]

DS1 is happy to give the university permission to contact me/DH if they are concerned about his mental health or wellbeing. From what it says on the university website, he needs to give permission in writing. Does anyone know where to find a template for how to word this?

[NoHaudinMaWheest]

Disability services usually have a standard form for permission. He can ask them to send him one.

[TheThirdOfHerName]

Thank you. There seems to be so much admin to do before he leaves, and admin / organisation are things he needs support with. When asked to do 'official' stuff, the anxiety makes his mind go blank.

He's going to Reading with friends from 22nd to 27th, and I go back to work on the 3rd (more hours, more responsibility) so there are only 7 working days in which to get stuff done.

He has an appointment at the bank tomorrow to open a student bank account, and has asked me to go with him.

[NoHaudinMaWheest]

Dd needs lots of support with admin too though at least she will get on with it and not have to be reminded dozens of times unlike her brother.

[TheThirdOfHerName]

Here's the breakdown of DSA-related tasks I created for DS1, in case it would help anyone else:

Apply via SFE.
Ask Dr for medical evidence.
Email medical evidence to SFE.
Await confirmation of eligibility.
Make appt for needs assessment.
Await report & approval from SFE.
Research laptops for upgrade.
Email supplier for upgrade quote.
Pay excess amount to supplier.
Contact supplier to arrange delivery.
Arrange laptop insurance; keep receipt.
Arrange assistive technology training.
Buy printer paper & cartridges; keep receipt.
Contact disability services at university.
Claim reimbursement for costs.
Visit disability services to arrange mentoring.

[NoHaudinMaWheest]

Thanks the third that is a good comprehensive list.

I have thought of a few other disability related things which it might be helpful to consider.

Find out about nearest GP service ( often on campus ) and register.
Make an appointment if you have ongoing health issues to ensure practice is aware. It can take quite a while for records to be transferred.
Take about 1 months supply of any prescription medication with you from home.
Find out where nearest pharmacy is. It is less common for there to be one on campus though some do.

Register with exams office for exam adjustments. Usually adjustments for A level will be continued but some universities have different ways of managing rest breaks or small rooms, so check what adjustments will actually be.

If you haven't already highlighted additional needs for accommodation do it right away while allocations are still happening. (Things like an ensuite, closeness to campus, a quiet flat, kitchen space if there are dietary needs.)

Anyone with other tips please do add!

[HardwickWhite]

So thanks to support and suggestions here and on the other thread, we have appealed DDs accommodation allocation. Just by chance I noticed a live chat button on the accommodation services web page and DD has got the ball rolling submitting all her evidence. They have promised she’ll hear back within 5 days, so fingers crossed. Tbh if they don’t it seriously I will be worried for the bigger picture, but so far so good.

I am so grateful there are other people here to share with. You don’t get a handbook, do you.

[NoHaudinMaWheest]

That's good to hear Hardwick.

It is university preparation++ for us isn't it.

Just discovered (or dd did) that the university health centre isn't enrolling new students until the 10th -beginning of welcome week. One reason for my going up early with her was to have the first GP appointment together so that she was set up so to speak before going it alone. I feel another phone call coming on on Monday.

[HardwickWhite]

Yes, I have booked a flat for the first few days to be on hand for things like that if I can. She can be fully independent if all is going well, but if not i’ll Be able to be right there, and not an 8 hour drive away! I can work while I am there (or visit family) so happy too to be at arms length if she’s managing.

[TheThirdOfHerName]

DS1 managed to phone the accommodation office to chase up his application. I got him to write down all the info he'd need, so he'd have it in front of him in case his mind went blank.

He asked me to stay in the same room, but I didn't have to do anything apart from provide moral support by being there. He made the phone call, there were no panic attacks.

Feeling positive.

[NoHaudinMaWheest]

That's great thethird.

Spent ages this morning trying to work out how to send dd's manual wheelchair which is pretty large. Think I have got it sorted now.

[HardwickWhite]

Has anyone worked out what to do about medication? DD is normal only allowed a month at a time, but the uni website recommends 3 months supply with them. She won’t be able to sign up to the campus health centre if we are not successful in our halls appeal (not sure if that is relevant TBH but it is bothering me). I suggested she put a note on her repeat prescription request but she doesn’t want to.

I’m worrying more and more about her ability to cope.

[NoHaudinMaWheest]

I think the three months supply is mainly for anything which is consultant supplied/supervised. One month should be enough for other things.
If she has a new supply just before she goes and registers with a GP in the first week it should be fine.

[HardwickWhite]

DD's accommodation appeal has been successful, and she now has catered at one of her choices. It was definitely her last choice, but is much more suitable than her first allocation. The covering email from the accommodation manager was so sweet I actually cried. Everyone has been so lovely to DD; and you all to me.

[TheThirdOfHerName]

HardwickWhite that's really good news; what a relief for you.

[NoHaudinMaWheest]

Great news

[NoHaudinMaWheest]

I think we have found a good solution to the wheelchair dilemma.
We went back to the mobility shop to get measured up for a new chair in case she needs it and they happened to have a nearly new chair which was suitable. It had only been used lightly for a matter of weeks and so is almost new but is considerably reduced because it is secondhand. With what they will give us for her old one, it is affordable and so we are going for that option and it should be ready for her to practise with before going off.

[TheThirdOfHerName]

NoHaudinMaWheest what a lucky find. It will be a relief if that's sorted before she goes - one less thing to worry about.

[Stressedoverkids]

NoHaudinMaWheest wow delighted for you both.

I am sure that's a weight of your mind.

[HardwickWhite]

That's brilliant! Good bargain finding.

[jewel1968]

My DS is dyslexic and so will try and get the support on offer. He also has major (life threatening) allergies which the school was very aware of and kept a spare epipen in case it was ever needed. Is this something a university would also do? And how would we/he communicate this?

[NoHaudinMaWheest]

I don't know the answer and it might be tricky to replicate school provision as university students will typically be in lots of different locations.
It is certainly worth flagging up with accommodation, his department and disability services though. Perhaps carrying an alert card or wearing a band or chain?

[TheThirdOfHerName]

jewel1968 as you know, he should carry 2 EpiPens with him at all times.

I'd also suggest a medic alert bracelet (you can get masculine-looking paracord ones if he doesn't want to wear 'jewellery'.

With storage for the spare (3rd) Epipen I would ask disability services at the university.

[HardwickWhite]

DD's DSA needs assessment arrived today. 26 pages! It is incredibly detailed, and thorough. I'm concerned that they haven't noted on it anyway that she will start so soon (it just gives the month) and can't see any of it being delivered in time for her starting. She refuses to do anything to ensure that the uni are fully aware, so I feel a bit stuck. I know huge admin processes take time, but she'll be starting (which I would argue will be most stressful for her) with none of the stuff (or mentor) that they say she needs.

I'm also gobsmacked at the financial value they have attached to it. None of it is excessive, but it really adds up!