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]

Thanks for your input, Gwynfluff

thethird Ds did eventually start using a calendar app once he could see on the ground it was necessary.

[TheThirdOfHerName]

NoHaudin there's hope then...

[NoHaudinMaWheest]

We have a new dilemma.

Dd uses a powered wheelchair most of the time outdoors. The seating in the current one isn't great and exacerbates her pain, particularly if she is sitting in it for a long time. The university said it was unlikely that she would be able to transfer for lectures so we decided that we would have to revisit the seating.

The engineer came out yesterday and said that there was absolutely nothing that could be done about current one and only option was to buy a new one.

Which of course will cost thousands and this is not a good time with other expenses for both dcs. We could use her PIP to access the Motability scheme but that is not long-term the best option financially.

Also her PIP is being reviewed at the moment and we won't be able to access Motability until it is renewed. There shouldn't be any doubt about the renewal but still - DWP and all that. There is also no timescale for the renewal to come through and we are very close to going away day.

So I really don't know what to do for the best.

[Moominmammacat]

Could you ask the university if it has any funds to help?

[EllenJanesthickerknickers]

Crikey. I imagine that's not going to be cheap. How long do the wheelchairs last, how old is your current one?

[stayathomegardener]

I'm taking so much from this thread!
Thank you.
@NoHaudinMaWheest

Whilst trying not to hijack it...

Dd has a house share booked with 8 course mates next year, she is desperate to just be "normal " and also found halls very noisy despite the relative convenience last year and good sleep makes a huge difference to her.
I have noted and was not aware that she maybe able to claim for fuel, that would be amazing.
Recording devices for lectures are also something we hadn't considered.

Pip is something we just discounted on the basis that so many on these threads in desperate need seem to be being turned down or have it revoked.
Dd has had her mitochondrial function tested which is pretty gold standard for cfs testing and has only 30% so she is pretty badly affected.
Do you suppose we should try?

[stayathomegardener]

Re your DD's wheelchair seating would it be worth taking it to a really clever upholsterer?
Am thinking memory foam and waterproof covers.
Apologies if that's wide of the mark, a whole new chair seems crazy.

[EllenJanesthickerknickers]

Definitely try for PIP. The worst that can happen is you get turned down. If you do, it's worth it to appeal.

[NoHaudinMaWheest]

I second trying for PIP. It isn't an easy process but does come with many advantages if she gets it as well as the additional money.

Her existing chair is two years old so we would probably get something back on part exchange. The difficulty with trying to add anything to the seating is that it then alters the relation to arm rests, foot rest etc and doesn't help with comfort overall.

We are going to visit the original supplier on Monday and see what the options are.

[Stopyourhavering64]

I have/ had 3 dcs at various Unis(2 350 miles away) and all with various combinations of dyslexia, dyspraxia and dyscalculia....Ds and eldest dd also have mh problems and have or in process of accessing counselling
Both dds were eligible for DSA and eldest was able to access a wide variety of support via student services ( scribe, proof reader, recording of lectures photocopying ) as well as software support
Eldest dd graduated with MA hons , then completed MSc and is now teaching English in China...no mean feat for a child who was told by SENCO she'd be lucky to get a few GCSES
Fortunately for her, her course had few exams after first year...something to bear in mind when choosing courses/ options
Her brother is now at same Uni and is also benefiting from this degree structure ( Scottish Uni)
They've also benefitted from fact that they had a very strong role model in their father who is also severely dyslexic , dyspraxia and dyscalculic but has 3 degrees and is a very successful professional
Younger dd was in denial with her dyslexia when she first went to Uni ( she did very well in her BTEC)
However she has only now applied for DSA for her final year , despite having a full needs assessment done before starting uni , but didn't follow it through.......despite me continually reminding nagging her
The sooner they access support the better....but the saying 'sometimes you can lead a horse to water' comes to mind!

[NoHaudinMaWheest]

Stop it is good to read your experience .
Well done to your eldest dd. In these situations it is tempting to wave the great qualifications under the noses of the doubting professionals.

I am fortunate that both of mine have been happy to ask for and receive the necessary assistance. It must be so much harder when they won't. At least your younger dd has realised before it is too late.

[stayathomegardener]

@HardwickWhite just a thought but I quietly emailed dd's course leader to let her know dd's difficulties prior to her starting and said that dd would only be likely to ask for support if directly questioned and should that happen we would provide any assistance we could. I did add on the end as dd was an adult I appreciated that she may not even be able to respond to me and that was fine.

I had a lovely response saying how much she appreciated the information but yes I wouldn't hear anymore from her.

"Coincidentally " she turned out to be dd's personal tutor and was invaluable in catching her just before she fell and providing brilliant support.

Unorthodox but worked for us.

[stayathomegardener]

Needs assessment tomorrow and I have made copious notes.
Thanks again @Stopyourhavering64 for starting this thread.
I do feel that those on MN who may benefit from it may not be able to find it but not sure how that can be rectified.

[HardwickWhite]

Thank you Stayathome. I will see what the DS people at the uni say (they seem fabulous, should she make her offer) and take it from there. That is definitely not something I would have thought of, and is a good suggestion.

Will you be going in with your DC for their needs assessment? I'm not sure what to do. I worry that she will minimise, or skim over, but at the same time she seems relatively comfortable in her own skin at the moment. Hopefully that will last beyond results day!

[Somewhereovertheroad]

Hardwick Dd's tutor was very clear that it was important for someone to go in to explain the needs.

Might be different in different places though.

[NoHaudinMaWheest]

hardwick unless your dd positively objects I would go with her to the needs assessment. There is a lot to think about and it is helpful to have someone else there regardless of any motherly feelings.

Update on our wheelchair situation. Buying a new one is going to be even more expensive than I had thought. Especially with the uncertainty about PIP renewal I don't think we can do it at the moment.
We also don't know for certain that dd won't be able to cope with the current one though it is likely. (And of course until results we don't know that she is definitely going there anyway.)

So the plan is to get all the specifications for a new one done and let the mobility provider hold them on file. If after a few weeks, dd isn't managing we will order the new one. She has reading week in the middle of the semester so could come down then to take delivery and hand in her old one. Hopefully by then we will have a PIP decision too.

[Somewhereovertheroad]

@NoHaudinMaWheest are there any charities that you could apply to for funding?

I can't remember the name but at one stage Dd1 had an ABA therapist who suggested we could of applied for funding to support Dd unfortunately we didn't qualify but I was amazed at the time at the types of things they would fund. I am pretty sure a wheelchair would qualify.

From our perspective PIP renewal was very straightforward. Dd1 did all the talking but don't forget if you are there advocate financially then your Dd doesn't have to do any talking you can do it all.

[NoHaudinMaWheest]

I think it is unlikely that we would qualify for charity funding. It isn't impossible to afford, just a bit of a stretch.

Thanks for the feedback about the PIP renewal. We don't know yet if she will have to have a face to face interview. Nothing has really changed since the last time but you never know.

[HardwickWhite]

DD is just back from her DSA needs assessment. She went by herself. I was selfishly really upset, but recognised that the very fact she felt she could means she is significantly on the way to better health.

They were apparently fantastic. A mentor, a laptop, various lecture recording and voice to text apps, and even an overlay for her screen, so that she only looks at a small section of text at a time were all suggested. She will get it in writing next week, and a couple of weeks after that, it should start to fall in to place. That will mean that if she gets her first choice, she may be away before it all happens, but I suppose we can deal with that as and when.

She looked really happy - not something we have experienced much recently.

[NoHaudinMaWheest]

I am glad it went well and that sounds like good support.
Is her first choice starting early in September? Dd is also in that position.

[HardwickWhite]

Yes, early September. The 10th is arrivals day I think. If she goes to her second choice we get an additional week.

[TheThirdOfHerName]

HardwickWhite good to hear that the needs assessment went well. DS1's equipment is due to arrive at the end of August.

I still can't quite believe he has been accepted at his first choice university. He emailed their disability services today to make contact.

[HardwickWhite]

NoHaudin I see our DC are heading to the same place!

[Somewhereovertheroad]

Dd has missed her offer by one grade. So frustrating that AQA don't give a mark just a grade and we can't find out until tomorrow if a priority remark is an option. Thankfully they are holding her place for her.

[NoHaudinMaWheest]

The third great the ds made his first choice and that he has contacted disability services right away.

somewhere fingers crossed for tomorrow.