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!)

Sorry Gwynfluff I don't quite understand your post.
Dd does have a mentor to help with organisation and academic load.
However that doesn't help her manage to get in and out of an inaccessible laundry room. She is a wheelchair user.

That is absurd NoHaudin. Have they checked that it is the same in all the laundry rooms? I’m fairly sure DDs hall would be no good (steps all over the place and no automatic doors) but maybe one of the other new ones, or SC the newly built semi independent one just down the road? Could she maybe appeal for a volunteer to help her on the halls FB Page?

It is not actually doing the laundry per se that is the problem. We worked on that over the summer and she knows what to do and will do it. She just can't physically access the facilities.

I am bloody outraged. That university has millions and millions of pounds of building work going on yet they cannot do this? Bloody outraged.

hardwick it is pretty outrageous that there hasn't been an thinking through.
She is in the newest block so there is no excuse. I also don't understand why it hasn't come up before. The block has been up for several years and is one of few places with wheelchair accessible accommodation. Surely previous students washed their clothes?

Resident assistant didn't get in touch as promised. She is down to her last set of clothes. She did got to the office and managed to ask them to check her pigeonhole but as they were both guys she was too embarrassed to ask for help with washing. Maybe she shouldn't have been but I do understand.
She is absolutely going to have to ask for help tomorrow. She doesn't do Facebook and it would be really tough for her to just ask anyone she saw around to help.

Dd starts this morning. No DSA support in place yet.

She assures me she will be fine.

NoHaudinMaWheest does she have a mentor? Dd has a go to person although they aren't actually in place yet but I do have an email contact with the student support centre person.

I am sure someone would help if they were aware. Not great for promoting independence though!

Sorry missed the post where you said she had a mentor.

I thought the mentor was to help with difficulties related to studying and accessing the course. I didn't realise they could help with other stuff.

DS1 did another software training session today. He thinks Mindmanager will be particularly useful. The lecturers are supposed to make the slides available before each lecture so he can import them to his note-taking software, but he doesn't know how to access them. This is on his list of things to ask the mentor.

the third yes you are right the mentor is for academic (in the broadest definition) difficulties only.
Laundry is classified as personal care. There is a slightly fuzzy boundary as to what is personal care. Washing and dressing clearly is but are other every day living areas?
Her halls are rather unusual nowadays in that they are fully catered and have housekeeping staff who clean weekly and provide clean bed linen. Housekeeping have agreed to do extra for dd that they don't normally e.g. changing the bed linen and emptying her bins. The catering service also provide someone to help her get her food and take it to the table.
Initially they said someone would help with her laundry. Now they are saying that is personal care and they can't help.
The truly infuriating thing is that if the laundry room and the machines were accessible she could, albeit with some difficulty, do her washing herself.

I don't think it is reasonable to expect her to rely on the goodwill of other students especially when she hasn't had the chance to get to know anyone yet. So I will have to find a care agency willing to do it and pay them for over an hour's service for something which really only takes ten minutes.

Thethird has he met his mentor yet? I would have thought disability services would be able to tell him how to access the slides. though I know it is another phone call/email to make.

To date Dd's mentor has helped with anything that needs help but I accept that she probably goes beyond her brief to do so.

stressed I think she probably does but at the beginning to help your dd's settle in that is a good thing.

This will be ongoing so not quite in the same category.

Sorry, I meant the disability adviser for advice and sorting out the access and accommodation difficulties and the mentor to help with the academic planning and anxieties she had around that (good to hear she has one). The latter are usually advocates in general and would offer help to communicate the issues with accommodation and access.

Her disability advisor is on to some of the access issues but the laundry one she has said she can't help with.
It was clear from her reply that she knows less about accessing personal care help than we do.

That isn't a criticism as she is an autism specialist and it isn't really in her remit whereas it has been our lived reality for quite some time.

Getting in outside care is the only solution though dd is planning to highlight the issue to anyone who will listen. Hopefully future students will benefit even if it isn't dealt with in time for her.

Has anyone had issues accessing the DSA software training? My ds had one session yesterday and is having an emergency 2nd half hour today - he goes to uni tomorrow and was supposed to have 6x2hrs training on the DSA provided software (dyslexic/dyspraxic). Hopefully it's enough to get him started but it's all v last-minute, as he also suffers from anxiety don't want to bombard him with too much at this late stage as he's nervous enough about living in halls/ socialising as it is....

It can be difficult when everyone is starting at much the same time. It is possible to do once he goes though. Dd had her second session in Welcome week and is due to have other training once she has settled in a bit.
I actually think it can be beneficial to delay it a little. Partly as you say because of all the anxiety about other stuff but also because once they are there and studying they have a better idea of what is actually most useful.

Ah NoHaudin, I didn't realize they could do it at uni as the training person said yesterday he'd have to pick it up at Xmas when back (I assume it'd be a different provider as his uni is 3 hours away? Perhaps that is why they haven't mentioned it). I'll ask him to mention it today. Think his head must be spinning right now!

Is he doing it face to face or online?

Face to face - they've just texted to say are running late today so can't start till late this afternoon. Time's getting a bit tight!

If he could cope with doing it online, I would ask about that. It definitely makes it more flexible.

DS1 originally asked to have his software training in person but the earliest slot they could offer was two weeks after he started! He agreed to have online training and they've been able to fit in two 3h sessions within the past week.

The trainer phoned him and explained how to set it up. DS1 can see a little video of the trainer in the corner of the screen. The trainer can see what's on DS1's screen and they can both type stuff in and use the mouse.

He managed to cover everything once in the two sessions, and will then contact DS1 after 6 weeks to see if he wants any further training once he has had a chance to try using all the software.

NoHaudin he is still at home - he is leaving tomorrow and has made an appointment with disability services for Monday. He is hoping they will explain how to make the first appointment with the mentor.

Disability services should have allocated a mentor and arranged for them to contact him.
Dd only had her first meeting with the mentor this week so it might take a week or so. Urgent questions I would ask disability services.

Dropped DS1 off today. Everything went more smoothly than I was expecting. He was not able to log in to the app for his meal plan and started getting stressed, but we took him to the food court and they said he can pay for meals using his ID card until it's sorted. He is planning to register with the GP tomorrow (the health centre next to the university will have a marquee on campus) then he has an appointment with disability services on Monday.

His hall is on the edge of the student village and his room is on the furthest edge of the building from the communal areas, which could either be a good thing (it's quieter) or a bad thing (he could isolate himself).

I dropped off my ds today - flatmates seem nice but he's having a real panic as they all arrived before him and he thinks they've all bonded before he got there 😞. He's on beta blockers for his social anxiety and he has really low self confidence generally due to his dyspraxia and dyslexia- I'm at a loss what to suggest other than forcing himself out of his comfort zone and talking to a kitchen full of strangers. Currently he's sitting in his room texting me how scared of socialising he is.