How the ILF closure will effect real people

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?

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  • Stuart White

    Hi Martyn, many thanks for this. I am not immediately affected by this issue, directly, but my son will one day be in need of the support provided by the ILF.

    I’m also involved with the new website, False Economy, which is trying to bring together people’s stories about how the cuts affect them. We have a ‘Testimonies’ section on the site where people can write about their experiences and we are also on the look out for articles to go on our blog site. Please feel free to use the testimonies section or submit an article for consideration for the blog.

    But, most importantly, I hope you get clarity and assurance on the future of your care package asap.

  • Free2bfree100

    Hi Martyn,
    I am Jason’s mum and I like you have major concerns and fears re ILF! Jason uses it much the same way as yourself and like you received a couple of notifications regarding closure. What concerns us more as a family is why is there no major campaign starting up, it is as if everyone has gone quiet in shock! We must fight together to stop this happening, lives will be drastically changed and not for the best we fear. Why are they even considering this, or more like decided this. It cannot save them money to have everyone ending up in a care home!

    To Stuart who wrote the one and only comment. Your child may not be old enough yet to worry about this but you should be majorly concerned and also join in the fight against this abominable idea. Your child will reach this age before you know it and there will be nothing out there for your sons or daughters to know what it is to live an independent life! People fought long and hard, as I understand it, so that ILF was made possible. Gradually successive governments have decided the cost is too great to allow disabled people to have a decent life! I apologize for my typo errors spelling errors etc but I am livid and not that great on the keyboard. We must all fight together and I appreciate how hard that may be for some of you out there but this will be the only way we are heard. Please if anyone knows of a campaign to stop this happening let us know so we can join or if a few of us get together to discuss how we motivate others to join the fight that would be great.
    My name is Nadia my son is Jason he has cerebral palsy and is totally reliant on his funding to live a fulfilling life.

    • Martyn

      Hi Jasons mum. How old is Jason and what are his thoughts on this? Am interested on everyones views about this. I am looking into the consultation and any campaigns, so will keep you posted.

      Thanks for your thoughts and comments!