University

As a recent University graduate, here’s some tips and tricks I learnt that helped me!

1)            Contact your universities student support team! – Many universities can make adaptations for disabled students, such as extra time to get to lectures, equipment that may help, storage closer to your lectures so you have less to carry, the list goes on! The university you attend will want you to do your best in your degree and if some adaptations will help, usually they can be made!

2)            Keep some spare medication on you at all times or ask to keep some at a secure office/place. – Making sure to keep any needed medication on you in case of a pain spike or any other symptoms is essential. University usually has longer days and it can be hard to nip home to grab any needed medications. Ask your student disability team or a trusted lecturer if you are able to keep medication at university in case of emergencies, that way you will have access to it whenever you need it (And if you’re like me and forget to put it in your bag sometimes!)

3)            Don’t be scared to ask for extensions if you really need them – When I went to university I was having a fair few medical issues which meant I was struggling keeping up with my coursework. My lecturer sat me down one day and said some very wise advice! “Extensions are there for you if you need them.” There is NO shame in asking for an extension or some extra help due to medical or health issues. You can always ask your GP or doctors office to write you a note to go alongside your extension request as evidence also.

1. Everyone works in different ways, but personally, I found it best to start
assignments as soon as possible. This way, I had more time available if I needed
to take time for my health to rest. It also helped me to avoid high levels of stress
before a deadline which could also negatively impact my health.
2. Meet with a disability advisor as soon as possible to access reasonable
adjustments. At most universities, you can meet with a member of the disability
team to create a document which outlines all the reasonable adjustments you
are entitled to.
3. Take time to understand your university’s policy for extenuating circumstances.
Then you will know what options you have if you are not well enough to meet a
deadline or attend an exam.
My most helpful reasonable adjustments: – – – – –
My learning agreement (document containing reasonable adjustments) acted as
evidence for extensions – I did not need to get a new doctor’s note each time I
needed an extension.
Placements close to home – when allocating placements, my faculty had to keep
my travel time to a minimum. This made a huge difference!
Being able to record audio in lectures. This was particularly helpful for important
lectures about assignments and took the pressure off taking lots of notes and
remembering the information.
DSA (Disabled Students’ Allowance) covered the extra cost to get taxis to and
from placement (I paid the equivalent public transport cost). They can also
provide this to and from your accommodation and university if needed.
DSA provided screen reading software which helped with reading when I had
brain fog.
Top Tips for Living Away from Home
1. Meal prep – it is useful to have a few meals in the freezer which you can quickly
reheat on a low energy day.
2. Although they can be slightly more expensive, using items such as microwave
rice, pre-grated cheese and pre-chopped vegetables can help to save energy.
3. Online food delivery – you can usually get your food shop delivered to your
accommodation. This saves a huge amount of time and energy. There is often a
minimum basket charge, so I would normally buy food for 2 weeks or share the
shop with a friend.

Starting university is a huge change from previous education and can be both positive and negative. There are many changes that can make it easier to balance with chronic health issues than previous education – for example, less contact hours, lectures are often recorded and your timetable might be able to work around the times of day that work best for your conditions. There’s often more flexibility around how and when you complete your studies such as part-time options, fully remote courses or the option to take a year out if you need to. You are also a paying customer which gives you extra rights and you are normally seen as more equal with staff than in schools and colleges. However, it can also provide a lot of challenges especially if you are living away from home for the first time.

Applying to University

When choosing a university, make sure to check as much as possible if the universities you are looking to apply to can offer you the support and arrangement you’ll need – especially as you only have 5 choices and don’t want to waste any. You’ll normally be able to find all the information you need on their websites but if not, many universities will be happy to answer questions over email or even meet with you in-person or virtually so that you know you are applying to somewhere that can meet your needs.

There is the option to disclose disability through the UCAS process. You could mention it in your personal statement or in your reference and this is completely up to you and your teachers. Occasionally, universities will give lower offers if your education has been disrupted by a long-term health condition. There is also a specific section on UCAS about disability where you can choose to declare if you are disabled and details about your disability. This information is not used when universities are making admissions decisions and filling the section out is optional. Regardless if you disclose disability during the UCAS process, the information often isn’t passed onto your university’s disability services so if you need support or arrangements at university, it would still be a good idea to reach out to them and start the process.

Support Plans

Educational support at university is mostly implemented through a system of documents about each student with support needs. These are documents that list your conditions, the impacts they have on you and what supports you need in place. They are given to department and teaching staff and set out a list of arrangements that they must follow around teaching sessions, attendance, timetabling and exams. Examples of arrangements include:

• Attendance policies not applying for disability related absences
• Only having sessions in rooms with step-free access
• No early morning sessions
• Making sure all of your lectures are recorded
• Allowing drinks in places they are not usually allowed
• Exam arrangements (could link to Laura’s page here)

These documents are known by many different names depending on the university – some of these include Student Support Plans, Support Summary Sheets, Learning Support Plans and Reasonable Adjustment Plans. You will normally need to provide medical evidence, but you can often start the process – by contacting the university’s disability services – whilst you’re still gathering evidence. Some universities will accept suspected or working diagnoses as evidence if you are still waiting for formal diagnosis. It is helpful to get this in place if you are eligible even if you don’t think you’ll need to use it as this is easier than trying to get it in place later if the need comes up and there will often be deadlines especially to have exam arrangements in place. Most universities won’t reach out to you about getting one in place and it is normally up to you to get in contact with the disability services department. It might be useful to start the process in the summer before you start university so that it is ready to go as soon as you arrive rather than waiting until you start (if your offer is conditional, most universities will still allow you to draft a plan before your attendance is confirmed).

Resources

For work experience/internships – 10,000 Able Interns https://10000internsfoundation.com/resources/10000-able-interns-information-deck/

For help if you’ve had or are having a break from traditional education – Bright Futures UK https://www.brightfuturesuk.org/

For help with funding – Snowdon Trust https://www.snowdontrust.org/

For access information if you’re moving somewhere new – Access Able https://www.accessable.co.uk/, Sociability https://www.sociability.app/ and Wheel Map https://wheelmap.org/

Disability Rights UK Disabled Students’ Helpline – https://www.disabilityrightsuk.org/disabled-students-helpline

Living Life

Social Care

If you’re moving away from home for the first time and have significant difficulties with personal care, cooking or cleaning, it might be worth looking into social care even if you haven’t accessed it before. If you meet certain criteria, it can usually be provided by either your home or university area council. It doesn’t have to be live in care and can be as little as a couple of short visits a week. If you think or know that you will need this, it normally takes at least a few weeks to go through the assessments (of your needs and also your finances as people with a certain amount of savings do have to pay for their own care) and get the paperwork in place before you can either find a care agency or recruit PAs. There are positives and negatives to both options – the main trade-offs being that PAs give you more consistency and control over who is caring for you but agencies prevent you having to become an employer as well as meaning that you have cover if your usual carer is ill or on holiday.

Social Life

Often students find that people at universities tend to be much more accepting or just not bothered by health issues than at schools and colleges. There’s also a far wider range of people at universities which can make it easier to find ‘your’ people. Most universities have Disabled Students’ Networks or other societies for disabled students which can provide ways to meet other disabled students and students with long-term health conditions but also they can often provide support and advocacy if you do run into any issues. Some universities also have specific schemes you can join as a disabled person, and these sometimes include social events and opportunities to meet new people. It can be hard to manage education, socialising and potentially living on your own for the first time with all your medical issues, appointments and admin so organisational tools such as planners, calendars and lists can help.

Lots of students go to university expecting to be placed under a lot of pressure to drink but this often isn’t the case so don’t worry if you aren’t able to or don’t want to. These days, universities have much less of a drinking culture than previously. You can also still participate with activities normally focused around alcohol – for example, clubbing sober can actually still be a lot of fun – without having to drink and drinking games can just as easily be played with water or often even without any drink. If you have access needs and are going clubbing, it can be helpful to check accessibility in advance especially if it’s your first time. Lots of clubs and bars appear to be inaccessible but actually have alternative entrances without signage. You may want to also specifically check what the access to outdoor areas is like especially if you struggle with temperature regulation as clubbing can be an easy way to overheat. Lots of universities also have campus bars which can be a good way to experience that side of university life without being too far from your accommodation or places that you know you can go to for support if you need it.

Although there is a lot of focus put on Freshers’ week, it really isn’t as big of a deal as it can seem when it comes to making friends. Whilst students often meet lots of different people during Freshers’, there’s often too much going on and too much alcohol involved for anyone to form any proper friendships and these normally come in the weeks and months after as everyone settles in. There’s lots of opportunities outside of Freshers’ events to meet new people such as department social events, events within your accommodation and student societies. Student societies are clubs run around a specific thing (such as a sport, academic area or specific interest) by students and are great ways of finding friends that you already have something in common with. Don’t worry if you don’t find your friends instantly, most people take a while to do so and there are plenty of opportunities far past Freshers’ week!

If you are commuting to university, there will often be social events specifically for commuting students at the start of the year to help you meet other people in a similar situation. If you can, it can be helpful to stick around for a while after your lectures or arrive early as there will often be other students waiting around or just getting on with a bit of work who would be really happy to get talking to you especially during the first few weeks.

Medical Care at University

If you can, try to get set up with a GP (and a pharmacy if you’re on any regular medications) before you arrive at university. It can be helpful to book a GP appointment for quite early on once you arrive just to go through you diagnoses, medications, allergies and any important points in your history to get your record as accurate as possible and the surgery familiar with you especially as records often don’t get passed on accurately or even at all from old GP surgeries.

Managing Finances

Depending on your household income, if you get PIP you may be entitled to more maintenance loan (https://www.scope.org.uk/advice-and-support/loans-scholarships-might-affect-benefits#:~:text=If%20you%20are%20disabled%20or,loan%20you%20are%20entitled%20to). Some universities have funds and scholarships you can apply to including some that may be reserved for students with disabilities or long-term health conditions.

If you’re looking for part-time jobs, jobs provided by the university can often be more accessible and more flexible/adaptive around absences for flares or appointments. Some universities have their own careers platforms or use platforms like Handshake for these jobs. These jobs can be more accessible roles such as advising on the student experience, writing content or being a student ambassador as well as more ‘typical’ student jobs like catering and bar work. Summer jobs or internships can also provide a way to save some money ready for each year without having to manage working and studying at the same time.

Top Tips

• Online food orders and deliveries can be more accessible or help you to save energy
• If you find yourself needing support that you don’t already have in place, reach out. The onus is more on you to reach out than it is in school but once you reach out to one person, they should be able to get you to the right place. A good person to start with may be your academic supervisor/tutor or your practitioner from disability services.
• If you are living in university accommodation, it can be helpful to always keep a good supply of microwavable meals for days when you have less energy as well as spares of any food or hygiene items you can’t do without so that if you run out in a flare you don’t have to worry about getting to a shop

University can be a big step but the Disability Services at the University can help to support you due to your EDS and put adjustments in place to make studying easier. Also when applying on UCAS, you can declare your EDS and this will let the university know you need additional support or you can contact the Disability Team at the university you are applying to. Usually you will meet with a Disability advisor who can put together a support plan that outlines the adjustments that are required to support you. Some examples of adjustments include:

• Reduced contact hours to teaching sessions & on placements
• Fluctuations in attendance due to illness or medical appointments
• Lecture material & reading in advance
• Recorded lectures or permission to record
• Teaching rooms on ground floor or lift access
• Height adjustable table to use with a wheelchair
• Use of a computer chair
• Height adjustable lab bench, fume hood and sink for science courses
• Car parking permit

Library Adjustments

University libraries can be very large and contain lots of books that might be required for the research aspect of university. Staff can help find and retrieve books as they are often heavy and located on high shelves. The study areas also contain height adjustable desks suitable for wheelchair users or people who wish to stand and work.

Exam & Assessment Adjustments

Deadlines can be extended if your EDS affects your ability to study and you require extra time to complete the workload. This can be done by giving you extra time to complete the assignment or staggering multiple deadlines to make the workload more manageable. Arrangements for exams can be put in place depending on how your EDS affects you and this lists a few examples of arrangements.

• Extra time (25-100 %)
• Rest breaks
• Separate room or smaller room to main venue
• Permission to have food and water
• Permission to bring joint braces and medication
• Located near a toilet
• Height adjustable desk
• Desk slopes
• Ergonomic chairs
• Use of a computer for typing or speech to text software

Accommodation on campus

When choosing a university, accommodation needs to be considered and whether to stay at home or live in halls. If you choose to stay at home, you may be able to get help with travel costs between the university and home, through DSA. Universities by law have to make reasonable adjustments to make the accommodation accessible to your needs. Most universities have an accommodation team that will be able to tell you about which accommodation is most suitable for your needs, as some rooms may be adapted to suit your needs. Adaptations may include:

• Room located near academic department
• Room away from communal areas
• Ground floor or lift access
• En-suite bathroom or studio
• Automatic doors: to help wheelchair user move around
• Wet room style bathroom with grab rails
• Shower seats
• Emergency pull cords
• Raised toilet
• Bath
• Curtain closers and window openers: allow wheelchair users to reach them
• Lower shelving & rail in wardrobe
• Fridge in room due to allergies or medication
• Larger room to accommodate DSA equipment, mobility aids
• Ceiling track hoist
• Permission to bring orthopaedic mattress
• Kitchen: lowered or height adjustable worktops, sink & hob. Adapted handles on the fridge & freezer, to allow them to be opened more easily.

Some universities may also offer bursaries if your EDS makes it essential for you to have a specific room type such as a self contained studio or an ensuite bathroom.

https://accommodation.ucas.com/article/accommodation-disabled-students-individual-needs

Top Tips

• If you feel comfortable, declare your EDS on your UCAS application and the university.
• Ask the university about adapted accommodation.
• Visit the universities you are applying to.

Transitioning to university

• Every university is run and managed differently, and the internal support may be different from one to another. Many universities offer adjustments to exams and accessing the course itself. This is usually all made by yourself and a disability advisor from your university.
• All universities will allow access to DSA and should fulfill any requirements which come back from these.
• Some universities offer trial periods over the summer. In these you can go and stay at the university, get familiar with the support services, get used to being in the university, the city and the accommodations and get a taste of what’s to come for you and get comfortable in the new place before everyone is there and without worrying about starting the degree at the same time.

Top Tips:

• If able to, attend open days and explore support and accessibility within the city and university.
• If able to attend open days and talk to the disability team, they can often be found within the support or wellbeing tents. Also talk to accommodation teams if planning to stay away regarding an accessible room or requirements such as a standard room on ground floor as application may differ or require evidence. If required, get clear on the evidence needed and how to obtain it.
• Ask the university if you are able to make disability plans for the following academic year throughout the summer lead up with them as your firm or will you have to wait for it to be a confirmed place.
• If unable to attend open days finding this information on the website or by emailing/calling relevant departments.
• Get organised and get in touch with your firm choice early! If you wait till results day, by choice or need, get in contact with the disability team as soon as possible. They are often available throughout the summer.
• Make a note of key contacts.

Advice for Open Days

• If you are able to attend open days this will be a great opportunity for you to be able to meet with the disability team. To gain an insight to the ways you can be supported at their university.
  • Helpful hint: Some university may have their own disability team stand alone department, others it may be a team within support services or within the wellbeing services. If you see a stall for any of these they will be able to point you towards relevant information and staff.
• Don’t be afraid to ask the staff and students in your course talks about anything to do with any aspect of your learning.
• If you plan to or are considering staying away in university managed accommodation talk to accommodation staff about accessible rooms and how this application process works as it may differ. Even if your requirement is a standard room but on the ground floor it’s worth having a chat.
• If unable to attend open days finding this information on the website or by emailing/calling relevant departments.

What are my options for university?

• Attend a local uni, travel in and stay at home.
• Local uni but staying in accommodation.
• Going a bit further and stating in accommodation.
• Would you like to go with someone familiar or not.
• The open university, this is an online university where you can take longer to complete courses and work more at your own pace. Please see the open university website for more information.
• Part time study.
  • Helpful hint: If you was to take a break or leave university after any of the years in your undergrad as long as all work is completed and grades have been met you will still have a qualification.
• You can convert to part time between the years even if you originally sign up as a full time. You can also transfer to another university if you need to. Often universities has close relations with others which allows you a smooth transition back to a local or further a way uni once you have started the course, as long as they run and have space on the course you are intending on being a part of.
  • However, if your local home university isn’t a part of your chosen universities circle a transition is still possible it just may take a little more paperwork and time to get sorted.
• Maybe taking some time to get yourself slowly adjusted to living at home with support so you will be able to cook meals etc and work out how you will managed this before adding in your degree too. University isn’t going anywhere you can go at anytime!

I want to move into halls but I think I would struggle without care. How can I make this possible?

• Some with EDS/HSD may need a carer if moving out to be able to live independently. Some may visit and others may need full time care. This may cost money.
• These carers will need to be applied for in the same way as any other adult, via a carers needs assessment by the local council.
  • This will then be an individual based decision and if it is deemed safe for you to stay in halls of residence with care and your university are supportive then this should be possible for you.
  • Fun fact: Some universities will offer them a room next to yours in halls if this is the level of support required. Again get chatting to your potential universities regarding this. Also important to mention this in your DSA assessment.

Every council runs differently, however, an organisation that may be useful to contact via their helpline or have a browse of their website is ‘Scope’. They may be able to provide more information on adult care but not specific advice to your council.

Helpline: https://www.scope.org.uk/helpline

Some care information on their website: https://www.scope.org.uk/advice-and-support/apply-personal-budget-for-your-child

1. Communication is key!

If you have a tutor, it is important to tell them about your condition so that they can figure out how to best support you as a student. Some of the help I received included extensions to deadlines, the ability to leave classes earlier (to avoid busy hallways after lessons) and being allowed to bring snacks into the classroom if I needed them.

2. Time management!

Because of my hEDS, I have found that my body can be a bit unpredictable. This is why time management is so important! Making sure that you are always slightly ahead on your homework and studies will make sure that you won’t be set back by a particularly bad day in the future. I found that using a physical planner worked best for me, but there are many other methods that you could try such as notion and google calendar.

3. Care pack!

One thing I can’t go without at school is my care pack. This is a small pack that I keep inside my backpack, filled with things I might need during the day to manage my hEDS. Some of the things I keep in the pack includes any medication I take, electrolytes, salty snacks, and a small compression garment that can slide onto any joint if it’s particularly painful. You can put what you want inside!