Reading the news, watching lobbying in Parliament and perusing social network comments, you would think everyone using the fund wanted it back. Nowhere was there a balance of hearing from people like me. Long term fund users who were glad to see it end.
Disabled friends vilified me. How dare I be glad this is happening. It would mean imprisonment, having no care and feeling you’d be better off dead.
I am going to celebrate a new beginning.
Actually, my needs had not changed and the local authority did the assessment. They agreed to fund me the part ILF covered. I had no drop in the amount and I’m financially better off as I won’t have to contribute towards my care. So, at least for now, things are good.
The ILF had many problems for me. No longer do I have to do exhausting 3-4 hr reviews -being questioned by the ILF to enable funding for another year.
No more tears having to tell them over and over how impaired I am – repeating the same thing as Adult Services already knew. No more appeals and lengthy complaints procedures when they would cut my funding giving no explanation.
No more rules like “we give extra funding for out of pocket carer/PA expenses… but only if you ask” and “you are not allowed to use your ILF funded hours for doing window cleaning, gardening …. “. They even stopped disabled parents using their funds for Personal Assistance to enable them to care for their children.
Since 1997 I’d been trying to get them to communicate by e-mail because it was the easiest method for me that meant I could read information privately and easily and access it without physical assistance. That never happened. They continued phoning and posting printed information. They never understood my needs.
No more arguments between Adult Services and the ILF about exactly who would fund which hour. Would Adult Services fund the first toilet visit on a Tuesday or the ILF? That is how petty it would be. The ILF kept a chart of each hour on each day to see which ones they would fund. In the end this was nonsense because they both put the money in my account and I just got on with paying my assistants.
No more having to contribute 50% of my government benefit for care. I can now use that towards care and disability related expenses that fall outside of council funding.
The ILF was hardly run in the spirit of transparency and Independent Living. In fact, it was so bad the Trust had to rewrite its constitution some years ago.
Using the fund was a necessary evil. It got me through university when Direct Payments didn’t exist. It topped up my high care package that kept me living in my own home and employing PAs. They reluctantly funded some hours to top up a third funding stream, Access to Work. What a hellish process of persuasion that was.
and the ugly?
I don’t disagree that the switch over to council funding has been badly organised in England. People are having a very stressful time. I have too.
The local authority should have been made to ring fence the extra funding provided to them for ex ILF users. The amount was only a one off and it seems wasn’t enough to fund people in those local authority areas, causing ‘your funding may decrease’ letters going out. Also, councils left it until the last minute further adding to the stress. Finally, Social Care law changed in April so practitioners are still getting to grips with new procedures and guidelines which elongates the process.
Where I’m at today
My switch over was exhausting (made me I’ll for 4 days) but positive. It was done in an understanding manner and I was informed what stage it was at along the way. It was just a repeat of everything that should have been on file and some hoop jumping.
I am currently applying for Continuing Health Care and a Personal Health Budget. It’s going badly. It’s a hundred times more stressful and exhausting than the ILF switch because of making me feel dehumanised. I guess that story will become another blog post!
Update November 2015
I wrote an article for Disability and Society called ‘In celebration of the closure of the ILF‘. which was published in October.
It’s free to download.
I had the second part of my assessment to try and get a Personal Health Budget. As I wrote above, the first session went badly. The second one not so bad – but still exhausting and stressful. Basically they agreed to fund me and I switched over from Direct Payments within 6 weeks. I have extra funding for support to give hubs a break and some other things – so far it is going ok.