This is a guest post by Martyn Sibley and originally appeared on martynsibley.com
As always my life has been fast paced and on the tiring side. I am glad to say despite winter and general work tiredness, I am feeling good and looking forward to xmas. Due to things being busy, this blog on the recent Independent Living Fund (ILF) proposals is not the heavily researched or laid out as an intellectual thesis, as I would usually prefer ;-)
In some ways this is no bad thing either. You can easily google for what the ILF is, their history and for policy documents on independent living. What is more difficult to find is the real way in which recent events affect an individual such as myself. While I am going about my intricately balanced but effective care based life, the seeds of doubt have begun to enter my conscious.
For those who haven’t read my blogs on my care: I require 24/7 care to enable me to hoist, dress, cook, clean and have personal care. My needs were assessed by my local authority who have an obligation to provide the services I require. I am also a member of the ILF who enable more severely disabled people to access additional funding, enabling a more independent life to be upheld. Through these 2 funding channels I commission and pay 3 people to cover my care rota through the year. Having this support ensures I not only eat, drink and wash, I am able to live a fulfilled life; both career wise and socially. Hopefully my blog captures this essence and inspires others to live life to the full too.
So when news arrives the ILF will be finished by 2015 my ears pricked up. I know there have been lots of consultations around government policies and budget spending, so I didn’t jump to conclusions. Then yesterday the fateful letter arrived explaining; they had written in June of potential changes, worked with coalition government on the options, Maria Miller announced the funds closure in 2015, they will be in touch to consult on how they will fill the void in 2011.
It is a good thing that as a service user effected I am meant to play a part in the next steps. However to take away half of my care package means I would ‘suggest’ to them (understatement of the century) something should replace the void. I can only see for the sake of simplicity that the local authority would just be expected to pick up the tab. However knowing getting the amount I currently have was difficult when I moved to London. Then with the recent government cuts for local authorities, is this really the case?
If the void is filled, I dont care in what way, I will be happy and continue life as I do. However having ILF stopped and being potentially moved to another framework is bound to cause teething problems impacting my life. Should the void not be filled, the dread kicks in. With half the care package I would turn to my PAs and announce a pay cut. The likelyhood of anyone working 3-5 days straight for 24 hours is remote. They are great people and care for me deeper than just a job, but its not economically sustainable for them as people. So, then comes the point of would anyone of the right qualities work for this? No. Could I cope with less hours? As I need help to get to bed, to turn over in the night and to get up, I would need support for those hours. But then I need help in the day to use the loo, make drinks, food, go to work. This all before I might like to visit a friend every now and then… You can see the dilemma. At this stage I may need to move back to Cambridge after quitting my job and selling my flat, rely on friends and families good will, lose my independence and not be even a shade of my current self.
So whether an answer is found or not, there are a lot of worries and concerns I have right now. With 4 years to go I need to win the lottery or get rich quick. However apart from those options its a scary prospect right now.
What do you think to this and various other recent government announcements?