N receives a no frills basic budget through Direct Payments and Adult Social Care that pays towards a team of Personal Assistants. The Independent Living Fund on top pays for one much needed part-time member of staff.
The closure of the Independent Living Fund has caused its recipients to stand up and challenge. With demonstrations, discussions and debates at the Houses of Parliament, films, postcards to raise awareness, plus the 5 disabled people who are heading to the High Court appealing against Department of Work and Pensions proposals on the 22nd and 23rd October.
N has written to her local councillors to find out what is happening locally – they have not replied.
N is seeing her local MP on Friday but I suspect that is not going to make much difference.
N has been down to London to join Inclusion London in their demonstrations showing solidarity with her disabled peers and role models.
N has been part of two films about the impact of the closure.
So, my job was to do a bit of local research and find out what was happening to the funding here in Calderdale and if it would be ring fenced. I rang the local Authority and spoke to Adult Health and Social Care Head of Service’s Personal Assistant who said she would find the person responsible and would email me her contact details. The email came that day with the details of a new person I had never heard of. Perhaps the last one was beheaded. Or, moved on to another Local Authority. Or, given a very nice redundancy package and retired early.
I gave the number a ring. It started off as one of those phone calls where the person with the authority uses the guilt trip first and then when that doesn’t work comes in on the defensive.
“There are others also undergoing greater cuts to budgets” she told me, “we are an Authority whose Fair Access to Care can support people whose needs come into the Moderate, Substantial and Critical categories.”
I decided to get things straight from the beginning so I told her “I want you to know that I actually don’t give a shit about anyone else at the moment other than my daughter. It is her I have contacted you about. It’s about her independence, and her life.” She didn’t appear too shocked at my frustration.
Then it was the old usual argument about assistive technology being there to support people in their homes – which for me is just another way of cutting support
“Assistive technology is not appropriate for a young person with severe complex needs! She tried it. It was a complete waste of time and money” was my response. “She needs support and Personal Assistants not an aid”.
“We will have to re-assess” she continued.
“Re-assessment is not needed. She has been re-assessed 3 times in the last two years and has had 6 different social workers”, she was starting to infuriate me with her typical, local authority talk.
I was now in full swing and wouldn’t let her get a word in edge ways. I wasn’t taking a breath.
“I know, as well as you do, how much it would cost to fund the right support package for N. It is not rocket science. It is easy to work out. There is no point in re-assessing. Last time she filled the form with the social worker, without us being involved, the indicative amount came out at moderate to low. The social worker was pressurising her to sign it. I told her not to. She has critical needs. It goes without saying.”
“With ILF and her Direct Payment N achieves a better quality of life through employing her own team of PAs.” I continued “But she is worn out by the worry of her funding, the cuts, her constant recruitment of staff, she just wants to get on with her life with the right support.
We finished the conversation slightly in a better mood as she agreed to find out what was happening with the future of the Independent Living Fund in Calderdale. She said she would go off and get an update from the Finance Department.
Later that day we got an email with this response:
Thank you for taking time to speak to me this afternoon. I have had a chance to catch up with our finance manager now and can confirm that the ILF transfer to councils will be subject to a “top slice” from government – that is to say it will be lower than the current ILF amount. Sorry to be the purveyor of bad news”.
I looked up what top slice meant thinking it some juicy part of the Sunday Roast. The Oxford Dictionary says: Take (part of a budget or fund) and allocate it to finance a specific project, service, etc. That sounds like taking something that belongs to someone and using it for a different purpose.
With great respect I will be following what happens to those disabled adults who will be in the High Court next week. For my own daughter’s future and for theirs.