Ricky, a young man in a blue t shirt

Independent living – “I could be sat in my room for nearly 24 hours at a time”

Ricky is currently studying for a Masters degree in the Theory and Practice of Human Rights. In this blog he describes his experience of living independently while at university.

Before going to university, I knew very little about the operation of the social care system. I had attended residential schools for blind and visually impaired people since the age of 8, where specially trained staff were always on hand to assist if and when required. The prospect of not having someone upon whom I could always call was initially very daunting, but my desire to attend university outweighed such anxieties.

When I was planning to go to university, I opted to use a care agency for my support, as I felt this was a safer option than direct payments. After all, I was moving to a new town and didn’t know anyone in the area.

The idea of going to university for the first time without anyone to turn to for advice, let alone taking on the additional hassle of recruiting reliable support workers was very daunting.  Agency staff, in theory at least, would be vetted and experienced and it would be the agency’s responsibility to ensure that I always had the support I needed.

Theory and reality can be very different

Sadly, as is so often the case in life, theory and reality can be very different.  On several occasions, new staff would turn up at my door without me being given prior warning, something which is especially confusing for someone who can’t see.

The agency would often send staff at the incorrect time, inform them that my shifts were shorter than was actually the case, and would even tell me regularly that they weren’t sure if they had any staff members who could visit me on a given day, which made me feel more anxious than words can describe, given that my family lived in Ipswich, 125 miles away.

On one occasion, I was told the agency had no staff who could come and visit me that day.  When I asked the agency what they expected me to do for food, I was simply told that I would have to make the best of things and that I would be fed the following day!

Half-way through my second year at university, I decided to take the plunge and switch to direct payments. The direct payments system is not plain sailing by any means. It is a constant juggling act trying to ensure that all staff have sufficient hours to keep them happy in the job and there is no guarantee that suitable applicants will respond to adverts.

Direct payments

Nevertheless, direct payments have given me much more flexibility and I have been able to recruit many staff with whom I have a lot in common, so these people are not only my carers but also great friends. A direct payment support service supports me with logistical issues, such as ensuring correct taxation, National Insurance contributions, and pay slips for my staff.

Until recently, I had no more than 22 hours of support while at university and around half this while living at home. This support met my basic needs, but meant that on days when I had no classes at university I could be sat in my room for nearly 24 hours at a time. I therefore had very little social interaction during term-time. This, combined with the problems I had with my previous support arrangements, took its toll upon my mental health.

However, I have recently secured an increase in my hours to 41.5 per week.  As a result of this, I am confident that the forthcoming academic year will allow me to be even more independent and have an even more fulfilling university experience.

Find out more about young disabled people’s experiences of living independently. Read our new research report, Leading my life my way.

One thought on “Independent living – “I could be sat in my room for nearly 24 hours at a time””

  1. I am a PwD, in a wheelchair, in Canada. Our system is modelled on NHS. I am presently with an agency and have faced all these issues. Trying to switch to Direct Payments, which is a l-o-o-o – n – g process here.

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