Subscribe to our Blog by RSS or Email
From school to university….
by Srinivas Madipalli
Hello! My name is Srin and I am 23 years old. I have a disability called Spinal Muscular Atrophy and I use a powered wheelchair to get around in the world. I graduated from King College London in 2003 and I now work as trainee solicitor at a major corporate law firm in the City of London and live in central London.
I will be using this blog to share some of my experiences of major transitional periods of my life, which are faced by many, but involve unique challenges faced by those with disabilities. The first such period for me involves moving from home to live at university.
I started making preparations for moving to uni back in the summer of 2002, more than a year before starting a course, and before even receiving any offers! Moving to uni essentially brought up two key areas of difficulty:
1. Finding a uni that is accessible or getting that uni to make building adaptations
2. Independent living
An accessible uni…
Before making applications I toured various universities for their suitability in terms of accessibility and general character. Some were more accessible than others, and some were more willing than others to make adaptations. I ended up accepting an offer from i.e. Kings College London (KCL), who were very accommodating and willing to make any changes that were needed. This included building an accessible room at my halls of residence, and fitting automatic doors in various locations. An additional room adjacent to mine was provided for a support worker.
While sorting out accessibility issues, I was arranging with KCL and my LEA the support I would need while at college. This included help with taking notes during lectures, and help with various tasks while doing practicals in the labs. Funding for these arrangements came from the Disabled Students Allowance (DSA) provided by my local LEA. In order to receive the DSA, an assessment was required at a specialist centre in Central London. Apart from confirming that I needed support, the assessment centre serves to allow you to try out assistive technologies such as voice recognition software. If such equipment is useful, the assessor will ensure that the DSA is used to fund its purchase. During this time, I also made the decision that any educational support needed like notetakers etc, would be kept separate from the personal care which I needed. This ensured that the most suitable people could be appointed to such roles. By this, I mean that an individual, who is taking notes during a lecture or seminar, may not be suitable to help with personal care.
Nonetheless, by virtue of starting the process early various issues of difficulty could be identified and sorted well in advance. Moreover, my accessible room and the support that I needed while at college was already organised by the time term started.
Independent living…
Arranging personal care is probably the most daunting challenge faced when moving out. If you are unfamiliar with having strangers provide your personal care, this can be something which takes some getting used to. To further complicate matters, depending on your care needs, it may be necessary for your funding package to come from more than one source, which may require additional assessment and form filling!
As is probably still the case now, back in 2002, my social worker was the main point of contact in putting together the care package. Various assessments from a variety of professionals were needed in order to assist the social worker in determining the level of support needed. Even though these professionals may come to conclusions that may be completely obvious to you, unfortunately such formalities are required. In my experience, it was very important to be as honest and open as possible about the help needed. Requesting the personal support that forms the care package often works on the principal of “if you don’t ask, you won’t get”. It is important to prevent yourself from being in position where you have to ask social services to increase funding and the care package on an emergency basis while in the middle of a university semester.
After social services and the ILF agreed to fund a 24/7 care package, I also made the important decision to receive funding through the Direct Payments system. Direct Payments is a scheme where money is forwarded to a personal bank account, for which you account to social services at the end of every year. This system allows you to organise your own support and who you would like to employ. Direct Payments can be challenge to manage, and it is vital to make sure your social worker provides you with all the facts to help you make your decision.
Before starting uni, I chose to employ support directly by advertising, rather than through an agency. I held an application and interview process and initially decided to employ a single person, who started two weeks before term began. Social services also put me in touch with local advice centres and a payroll agency to help me understand my duties as an employer and to assist me with the required admin that arises when you are an employer.
How you decide to choose your support workers and whether you organise your support through Direct Payments is a personal decision, which is influenced by a multitude of factors. It is best made in consultation with your social worker who is there to help you, and those in your life who you rely upon.
Six years on, managing and administering personal care needs is still a challenge, but rewarding nonetheless. Even after six years, it is a continuous and ongoing learning experience. The entire process can be quite laborious and time-consuming, but in the end, the reward of having an easier life at uni where many of the above problems are dealt with before starting makes it all worthwhile.
- Share:
