On the back of my successful fundraising campaign I decided it would be a good time to share my whole experience regarding my (financial) transition to University. While I have mentioned parts of it during the fundraising campaign, I feel the time is right to share all, the good and the bad. As you all know I have Osteogenesis Imperfecta, and that means I am very prone to spontaneous fractures, also as I am wheelchair bound and not very physically active meaning that I am more prone to chest infections. As a result of these conditions, I require full time support and assistance to help me live out my life in as close to typical student as possible and to ensure my disability doesn't get in the way of my life. My experience of coming to university on the whole has been a largely positive one with my first year being the best possible year of my life, I have become more social, more active within the University and within the wider community and have managed to expand my horizons much more than I would have ever thought and I have been the happiest I've been in a while. However, over the year there has been a grey cloud hanging over me constantly, that of finance. Finance is something that is essential for anything you attempt in life, and as I've found out it is pivotal in university. I am so grateful for the support that the University has given me as well as the local authority but I feel more could be being done to help students in a similar position to my own.
Pre - University
Prior to entering university, I began my long search to find myself carers to help support me in my time at university. Making the step to start University marked a large milestone in my life, it would be the first time in my life that I had lived away from my parents and the first time I have ever contemplated anyone but my parents looking after me. Therefore, this move posed rather a scary but also exciting challenge. Happily, my local authority were very helpful in helping me find an agency which specialised in target recruiting individuals to become carers. Within a few months I had found and hired a team of four excellent, caring individuals to take on the position as my carers. After this elation of finding people who I felt comfortable to look after me was when the first "bomb shell" was dropped. It was surprising for me to hear that my local authority would not pay for the entirety of the costs of having my carers full time at University. I would only be able to have 40 hours during the week in the day and 7 overnight shifts equivalent. When I broke this down practically, I found that the hours I would be able to have my carers meant that I would have a six hour gaps on weekdays where I wouldn't be able to have a carer and I wouldn't be able to stay in my halls of residence over the weekend as I wouldn't get any support then, expect overnight. This left me rather in a pickle, whether I should stay at home and commute, meaning that I would have full time support from my parents or stay in halls of residence and face not getting all the support I need. The issue with stay at home for me was, while I only live 10 miles away from my university it involves a two hour bus journey in and out every day. I am unable to take other modes of transport as they are relatively more crowded which is my condition is not safe. Furthermore, the travel everyday would have an impact on my health, as the travelling and living without accommodating near my university would have meant that I would have to be seated in my wheelchair all day, and owing to my scoliosis (curvature of the spine) I would have been in pain all day which is not productive. And the issue with not having full time support from carers in halls would have meant that my personal care needs would not be able to be attended to throughout the day and only at specific times. Since I am unable to self transfer out of my chair, it makes it impossible to do these things without assistance. In the end I had to settle for having my carers for the hours offered by my local authority as while it wasn't the perfect situation it would be the most beneficial thing for my health and my studies. Following on from this unforeseen event, I got hit by another one, my local authority said that they would be unable to fund my carers room, which if they were staying overnight they would need. This was due to budgets cuts needing to be made in my local area due to government changes in spending and policies. In my head, this did not make real sense at the time and still doesn't really make sense now is why they would pay for just my carer and not help me pay towards the cost of the room that he would need. In light of this information, which I did not learn fully until November (2 months after starting university), it left with me with rather a conundrum of how I was going to take on this extra cost.
Having learnt this, it sent me on a rather a spin and left me dealing with daily reoccurring headaches, as I attempted to contemplate and solve the issue of how I was going to find an extra £9000 (approximately) to pay off my carers room. I believe what made my headache worse was during this time I found out that some local authorities paid for their residents to study wherever in the country they wanted through funding their carers, carers room and equipment. I found out that the more well off LEAs were able to support their students while others could not. This came as rather as a shock to me, and I felt rather disadvantaged.
As I didn't find out about this extra cost until November, I was already bound by the contract of the University accommodation service and was legally obliged to pay of this debt. While I was getting the maximum amount of student and maintenance loans and grants from Student Finance England (SFE), even if I used the entirety of it to contribute towards my accommodation fees, it still would not be enough. Bearing in mind this money from Student Finance, while some of it was meant to contribute towards my accommodation some of it was also for me to spend on books, food and other activities. However, at this point in time I had no choice but to spend most of my allocation from SFE on my accommodation, leaving me with very little to spend elsewhere. Thankfully, my parents were very helpful at this time, giving me extra money to back up my funds, however, coming from a low income family, I did not want to this to carry on. Even though in first term I had spent most of my funds on accommodation, there was still a pitfall which I could not pay off, typically in this situation the accommodation service would typically start accruing interest to my arrears. Thankfully to a helpful management team in my halls of residence and an understanding finance team within the accommodation service, they gave me a bit of grace by halting interest accruing and gave me until the academic year to pay of both rooms. While this was a saving grace and gave me a bit of breathing room it still left with me financial issues amongst dealing with the problems and life of a typical university student.
So began the long and desperate search for cash to help pay off these extra unforeseen costs. Along with my universities disability service, I looked in charity funding to see if they could contribute towards paying off my debts. However, by the time this started taking place, mid November to early December, the deadline for most charities had passed for the academic year and the next window would not open until June/ July. On the back of this, my university disability advisers suggested that I look to apply for the Access to Learning Fund (ALF), which can give students up to £1500. It is a utility which students can apply for once an academic year, and thankfully it came as my first source of funding and my first payment for my carers room. My next payment came from the Disabled Students Allowance (DSA), which in the first instance funding the equipment required for my studies, i.e. laptop, notetakers, etc, but the DSA also allows for the difference between a typically single room and a single en-suite room (which I had) to be reimbursed. Then there was a very long period where I was not paying off any more of my carers rent, until there was a change in social worker for me at my local authority. She came up with a way of me to get extra funding from what I was entitled to which I was not previously claiming for. I was not aware of this because my previous social worker, in my view was not as proactive as I would have liked and was not in possession of solutions or ideas or tips of where I should go in order to help me out of this problem. This enabled me to pay of a substantial amount of my debt off my carers room. Out of the approximately £9000 I had to pay, with contributions from my own SFE loans, the ALF from my University, the reimbursement from DSA and support from my new social worker and local authority I had been left with approximately £2600 and 6 weeks to pay in back in.
On Monday 19th May 2014, a group of students (my closest and dearest friends) launched a fundraising campaign in order to enable me to return to UCL and my halls of residence next year. Our goal of £2,600 was reached in less than one day thanks to more than 200 contributions and 400 shares over the wonder of social media. The extra money which we raised was donated to the Brittle Bone Society to support people like myself. After this successful fundraising, we decided to reach larger audiences, raise debates about disabled students with financial problems, who are likely to be affected next year and in the future. In the midst of this fundraising we found out that in relation to universities, the Rt Hon David Willets’ MP said in his last statement, the government will no longer fund non-specialist help such as note-takers and learning mentors (typically funded for through Disability Student Allowance/ DSA). I believe that disabled students should not financially be disadvantaged and no one like myself should go through these problems. Therefore, we set up our campaign entitled Disabled Students Justice (#DSJ). Our aim is to promote equality for disabled students' access to education and improve their situations in everyday life by providing them with support and care. For example, disabled students have to pay full price for an entry in some student nightclubs even though they cannot access the whole nightclub. Another area that needs to be addressed is the lack of height adjustable desks in most libraries at UCL. So far, we have the support of many other people and of two student unions, ULU and UCLU who will certainly help us to ensure that the social care aspects of disabled students are raised and not forgotten.
Follow our story and progress at the following places: