What assistance for medically complex dd for uni?

[mummeeee]

Dd is only in year 7, but is asking about uni/further education and I feel like I don't know enough.

Would love to hear from parents who've gone through transition from senior school to higher education with a medically complex child/young adult. Tbh, it always feels like we fall between 2 stools as far as any assistance is concerned, so I feel I need to look into this well in advance.

Dd is TPN- dependent (connected to an iv drip via a central line overnight for minimum 10hrs per night, minimum 5 nights per week.) PN = parenteral nutrition

In terms of practicality this is a bit like being on home dialysis. Due to central line it is higher risk than being on home enteral feeding.

Apart from this, dd doesn't have any other significant medical issues. No wheelchair/learning difficulties etc.

Currently dh and I are the only ones who connect/disconnect PN, do weekly dressing change etc. We are training dd to be able to do some of this herself by age 18, but realistically she may need several nursing visits per week once at uni. Also, she will need an additional room to store all medical supplies (with a pharmacy fridge) and any uni accommodation would need to have en suite wet room with separate hand washing sink (ideally away from toilet).

How is this type of provision made? Would there be accommodation of this type available at most uni's or would we need to look first for this and then at whether they provide the course she wants?
What financial assistance would be available to fund extra accommodation? Also, any additional help considering she can't work as well as study at uni (evening bar work not possible for example)? (Perhaps this would be PIP.)

My thinking is that if she had an EHCP in place at school (she doesn't and we can't seem to get one, even though it means she can't go on any school residentials unless I attend which is far from ideal) then the EHCP would aid the transition to HE, looking at her needs.

I'm concerned that as we don't have an EHCP then we will need a 'gap year' to try to sort her care needs and get suitable accommodation etc so she can go.

Really interested in anyone else's experience.

With regards to uni she could apply for the disabled student's allowance. Info here.

www.ucas.com/finance/additional-funding/disabled-students-allowances-dsas

I may be wrong, but I suspect you are having trouble getting an EHC Plan because on the face of it your daughter's needs appear to be health care needs rather than educational, and from what you say issues only arise if there is a need to stay overnight somewhere? Does she have needs that affect her at school on a day to day basis? Eg communication or social issues?

However, under the Equality Act, your daughter would be classed as disabled. Schools are legally required to make reasonable adjustments for disabled pupils.

I would ask what adjustments they are going to make and what support they are going to put in place so that your daughter can go on the next residential trip. It may be an idea to ask now so the school have plenty of time to organise whatever is needed.

Don't offer to go yourself. As you say it's really not appropriate.

As well as DSA, students in receipt of PIP who are unable to work are able to claim ESA/UC.

A larger room for medical equipment, ensuite wet room and fridge shouldn't be a problem at any university. A second sink may be. Some University disability services are better than others, so do speak to them prior to applying.

There shouldn't be a need for a gap year if DD doesn't want one. You can discuss adjustments whilst she is in Y12/13 and apply for DSA in Y13. Think about what type of university would be best e.g. not choosing a university no where near a hospital, or at the other end of the country to home, would a campus university be better than one spread out. Have you spoken to your specialist team and community nurses? They will have come across others that go on to university.

There is CHC and social care direct payments for some medically complex patients and those who need support with daily living tasks, however from what you have posted here i'm not sure either are relevant to your DD.

In theory it is possible to get EHCPs for health needs, but without needing SEN provision during school time &/or needing large amounts of time off it won't be possible for DD.

Due to the nature of TPN and central lines it may be difficult to get an alternative reasonable adjustment, other than allowing you to attend too, for residential trips.

Thanks both. Great information and will reply properly but waiting to collect dd just now so may have to cut this reply short.

You're both correct wrt EHCP and not needing assistance within school time related to learning, therefore not considered to be required. I was thinking that with an EHCP our transition to HE would be simpler, but without an EHCP we might struggle to get support for HE (might take time to do assessments/get requirements in writing for uni etc) but from what you're saying it should be possible to do in Y12/13 and therefore the lack of an EHCP is not such a problem. That's reassuring.

WRT going on residential trips without me I am still trying but failing. I had discussions with the junior school for year 6 residential, but they were unsupportive. I sent them details from the child law advice website etc to confirm that it's not lawful to insist a parent is present else prevent a child from attending. They put it all back to me to contact school nursing team/children's services/hospital team etc to try to find solutions, which i did but without success. I got a quote from a private nursing team for the care she would need which was £1000/night for 5 nights, hence £5000. The next step would be to take them to court, which we looked into, but that would cost several thousand. The schools option would be for her just not to go on the trip.
At year 6 we decided it was better to not choose that battle and so I just went on the trip but tried to only be around dd overnight. In practice that was difficult.

EHCPs cease when a young person goes to university, so transition isn't vastly different. Someone with an EHCP would apply for DSA just the same as someone without. Adjustments are made via that.

Schools have to provide reasonable adjustments, and while it's generally not acceptable for them to ask parents to attend, given the needs with TPN/central lines I'm not sure it is worth trying a disability discrimination case, because unfortunately I am not sure insisting the school sort the TPN is reasonable. I think given the cost of a TPN trained nurse the school would argue that it is not reasonable. I think the reasonable adjustment is likely to be allowing you to go. I would re ask your specialist nurse and the community children's nurses.

Most universities have larger rooms with en suites for those with additional needs, there would be room for a fridge but probably they won't fund a second room. The disabled student allowance can offset the cost of purchasing a fridge. Nursing care is not the responsibility of the university, it's something that she will need to discuss with her medical team.

One option is to attend a local university, my dd found this better because the situation in halls would be stressful