Jo's experience

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Jo is a PhD student at the University of York and she has shared her experience of getting the support she needed to attend her course and achieve her full potential.

How did you get the support you needed to go to University?

I self referred to Disabled Students Allowance (DSA) at the beginning of the summer before I started University so that everything was in place for the beginning of term. I had a thorough assessment for DSA in the summer before I started and this provided me with all that I would need to access my course to the fullest.

I also approached a charity for help with my first Disability Living Allowance(DLA) assessment but the second was done with help from the Disability Services at the university. Disability Services also helped me access housing benefit and further DSA re-assessments.

(DLA is being replaced by Personal Independence Payment (PIP) for people aged 16 - 64 who have a long-term health condition or disability. If you are not sure what benefits you are entitled to, you can contact Citizens Advice Bureau who can do a full benefits check for you. Your local Benefits Team will also be able to advise you.

How easy was it to get the support you needed?

  • The biggest problem is before starting university there is no 'one stop shop' to get the information and contacts you need to get the help you're entitled to and my 6th form offered no advice on the matter. I'm also under numerous agencies that don't communicate with each other and some agencies, such as wheelchair services, can't meet changing needs quickly enough, e.g. they couldn't provide my power chair in time for the start of my Masters so I had to turn to a charity for help.
  • It's also difficult to find and access relevant charities, and whilst they are very supportive when you do find them, the biggest problem is the lack of charities for young adults as the cut off age is often 18.

Turn 2 Us is a free service that helps people in financial need to access welfare benefits, charitable grants and other financial help.

How did you let the University know what your needs are?

During enrolment I was asked if I had any form of disability and I was then assigned to a specific person from Disability Services who I was given the opportunity to meet when I first started university. They helped with any queries or worries I had and helped me fill in a form which gave me additional support from the library, such as longer loan periods and help collecting the books I needed. They also liaised with my department and supervisor to help ensure that any recommendations from my DSA assessment were met, such as having lecture slides upfront or having the background colour of the slides in lectures changed to make it easier to read. They also helped me access housing benefit, DLA and DSA reassessments.

What type of support were you given?

My support ranged from receiving a laptop and speech recognition software, to a high spec desk chair and an electric desk which enabled both my desk chair and wheelchair to go under. My DSA assessment also provided me with taxis to get me from one campus to another and perhaps more importantly it provided me with a support worker for a certain number of hours a week which I could use as I liked, e.g. for note taking during lectures or help in the library. I was also able to access DSA reassessments as my condition deteriorated so that new forms of support could be put in place, and access to DSA support has continued throughout my masters and PhD, enabling me to further my education.

Also, my department, particularly my supervisor, have been extremely helpful and very supportive, e.g. when I have needed lecture slides upfront, extensions or time off due to ill health.

Did you receive any further help?

I initially had direct payments for care through social services via referral from my community Occupational Therapist. When my needs deteriorated  Social Services referred me to continuing healthcare, which resulted in me having 24 hour care.  I accessed a care agency via word of mouth. As my Local Authority (LA) would not pay for my carer's room in halls, Disability Services at the university helped me access housing benefit to help cover the costs.

The university also made adaptations to my room and PhD workplace.

Over the years I have also received help from charities, e.g. for help in filling out my DLA forms and for help towards the cost of my wheelchair and further adaptations to it.

Before you started university, what were your worries/concerns about accessing your course/attending university?

The distance from the accommodation to my department was a worry but after contacting the university prior to starting, they agreed to put me in the nearest accommodation and in a quiet block as I needed my sleep.

I also worried about accessibility, though they do provide students who mention disabilities during enrolment with a wheelchair accessible route around campus, though you soon work out your own best way of getting places.

People's reactions worried me a bit but there was no need to as everyone was friendly and welcoming and I did not feel that I was judged/treated any differently and I soon formed a wide circle of friends.

Being able to keep up with the work load was a big worry as I am often fatigued and have to have time out when I am particularly unwell but my supervisor has always been really understanding and I feel that I can go to him with any worries and he has always supported my need for extensions or time off.

Now that you are there, how do you feel?

Looking back on the worries and concerns I had before I went to university I would love to go back in time and tell myself not to worry! I was lucky enough to know about DSA before I started university so I had, had the assessment and everything was in place for the start of term which was half the battle. As for the rest of my worries and concerns, they were dealt with by Disability Services, Accommodation Services, my department, and in particular my supervisor, either before term started or within the first few weeks of term.

Overall I'm so glad I took the plunge and went to university as it has been, and still is, one of the best experiences of my life and through university I've had the chance to do more extracurricular activities than I would have done had I not gone. And perhaps most importantly I've met some amazing people who share similar interests to myself and made some lifelong friends.

What would you say to anyone thinking about going to university and worried they won't get any support?

  • Don't be! ...but start your planning up front early on in the summer before you're due to start, e.g contact the university with any issues, worries or special requirements you may have and start the DSA process ASAP.
  • Also contact Social Services well in advance if you are going to need care as it can take awhile to get your care package in place.
  • It is also important to remember that 'if you don't ask you don't get'!