Arrangements for the future care and support of 18,000 severely disabled people have been hit by chaos and uncertainty, a new report suggests

With a week to go before the closure of the Independent Living Fund (ILF), things do not seem especially reassuring for many of the 18,000 severely disabled people whose care package soon will be managed by their local council.

As one ILF user told an academic research project recently:

I am not looking forward to this... at all. I’m going to be really screwed.

The ILF closure has always been a desperately regressive measure: it is worth reading Zoe Williams here, or Mary O’Hara here to get a flavour of the cynicism behind the coalition’s decision to localise ILF funding with councils already struggling with billions of pounds worth of cuts.

Now, it seems we are to enter the next phase of what is now a now familiar austerity story: the chaos of cuts policy implementation.

Research into the ILF transition published this morning by Tom Shakespeare and colleagues at the University of East Anglia suggests that the process - which was supposed to be carefully managed between council and client, with a clear support plan - is in many areas shambolic and uncertain. The user experience has been broadly speaking negative and bewildering.

Shakespeare spoke in detail to 12 former ILF recipients from six local authorities. A common theme was council attitudes. Whereas the ILF was seen as responsive and flexible, with a clear commitment to independent living, councils were seen by users as rigid, bureaucratic, distant and “ignorant” about independent living.

An ILF recipient told researchers:

You just felt like another bloomin’ nuisance because they’re forced to give you some money that they don’t want to give you, basically.

Planning had been sloppy: some had not received care assessments, with just weeks to go to the handover. Those that did speak with councils found the emphasis was often not on what the care package could deliver, but where cash savings could be made:

They’ve been saying, “where can I save money”, they say “what are you using carers for”, “that isn’t applicable”, like what can I get from voluntary services, voluntary agencies or whatever.

Another said:

I feel I haven’t been communicated with. I haven’t, I still don’t really know what’s happening. I think I know what might, you know, maybe will happen but I haven’t actually got anything saying that.

The upshot of this, says Shakespeare, is uncertainty, anxiety and stress among recipients over whether their current package of support - which in many cases enables them to do paid work - will remain at current levels, particularly after April 2016, when the funding currently earmarked for ILF clients in council budgets is unringfenced, and the imperative of social care cuts starts to properly assert itself

One recipient told researchers:

I am concerned about the local authority one because I think it’s just going to be too easy for them to give money to other things. That scares me, it scares me that the amount of support I have might decrease which would effectively, probably, end up with me being bedbound and as I’ve already got pressure sores it’s not a good idea.

The researchers conclude:

Many respondents recognised the budgetary constraints placed upon LAs; however, inconsistent support, poor communication, and minimalist interpretation of independent living principles meant that few respondents were optimistic about the future.

The East Anglia resarch was carried out ibetween January and May. But there is little sign the chaos surrounding the ILF transition is drastically easing. According to Disability News Service (DNS), local authorities are blaming central government cuts for delays to care packages, with the Association of Directors of Adult Social Services Ray James quoted as saying, remarkably:

Where there are difficulties I urge colleagues to resolve them as swiftly as possible. They would have been caused by a lack of money: not a lack of concern.

DNS - which has interviewed 14 ILF recipients - reports that not all local authorities are in chaos, but in the majority of cases it has examined,recipients have still not been told how many hours care they will receive after 30 June.

Despite huge cuts to social care and disability benefits, the government’s stock response to such scenarios tends to be that care and support will be prioritised for the most vulnerable. Shakespeare is not convinced:

My reaction is I’m worried about the assumption of vulnerability. It’s putting people in a boxmarked “pathetic and hopeless”; people to be looked after. We want to be in the world and the community.

• There will be a lobby of parliament against the ILF closure on Wednesday 24 June, organised by Save the ILF campaign and Disabled People Against Cuts

