Preparing for life after the Independent Living Fund

The Independent Living Fund is for the chop but what will its demise mean for the disabled people who relied on its help?

The battle to save the Independent Living Fund is over.

A few months ago it looked as if there was a chance for a last-minute reprieve for the ILF, which helps severely disabled people live independently by providing cash to top-up their social care support.

In November, the Court of Appeal torpedoed the government’s original plan to shut the fund when it ruled the Department for Work and Pensions had failed to fulfil its duty to promote equality when making the decision.

But last week disability minister Mike Penning announced that, following a new equality impact assessment of the plan, the government is going to press ahead with closing the fund.

The only concession was that the fund will now shut in June, rather than March, 2015. After that the responsibility for supporting ILF users will fall to English local authorities and the devolved administrations of Scotland, Wales and Northern Ireland.

The decision was a blow for campaigners and one that many recipients of the fund fear.

Many worry that the change will result in a postcode lottery with the UK’s 18,509 ILF recipients left at the mercy of the different policies and financial decisions of individual councils.

As ILF users told the government’s original consultation on the plans, losing the ILF cash could have devastating results.

“People like me will end up sitting alone looking out of the window for most of the day, unable to even go to the toilet,” said one. “I will be imprisoned at home, and will even have to give up my dogs.”

Another told the DWP: “Before I was introduced to the ILF I was looked after by the local authority. I had no life at all, just a horrible existence. I didn’t get out of bed for months at a time. My care was extremely basic – to be kept clean, fed and medicated”

Funding reductions

The government’s new equality impact assessment is hardly reassuring.

It says “it is almost certain that closure of the ILF will mean that the majority of users will face changes to the way their support is delivered, including the real possibility of a reduction to the funding they currently receive”.

This is despite the government’s intention to divvy up the ILF’s £262m budget among local authorities and devolved administrations based on spending forecasts for each area.

Local authorities, notes the assessment, are likely to give people less control over how the money is spent than the ILF does and the fact is that not all councils pay for the kind of care that the fund would back.

Some ILF users may find that they can no longer employ personal assistants while others may find that local authorities are unwilling to support particular types of care, such as extra support for social activities.

An assessment carried out by Nottinghamshire County Council prior to the Court of Appeal judgement gives a taste of what may happen after June 2015.

In a report to its adult social care and health committee, the council examined what is likely to happen to 22 ILF recipients in the county.

In 16 cases nothing would change and for another three the council hopes to get Continuing Health Care funding to meet their needs but would use its share of the ILF funds if that didn’t happen.

In two cases the level of support on offer could be reviewed and, in the final case, the service user would lose some of their existing support.

Services that could be go included funding for extra cleaning and social time since the council’s social care support does not cover such services.

One complication, in England at least, is that the money councils will receive from what used to go to the ILF will not be protected, so local authorities are not required to keep spending the money on people who got ILF cash.

And with councils under pressure to save money, it wouldn’t be surprising if councils used the money in other ways either.

As Disability Rights UK’s director of policy Sue Bott, notes “the fact is that social care is chronically underfunded and this decision will only exacerbate that situation”.

Nottinghamshire’s assessment also suggests that taking on the ILF’s remit may result in additional cost pressures.

Under the council’s charging policy ILF users seem likely to pay in less towards their social care after the transfer than they do under the ILF. That, Nottinghamshire predicts, could leave the authority with a £500,000 shortfall in the money needed to support the county’s 70 ILF recipients.

Care Bill could help

The DWP’s equality assessment does, however, say that some factors may help to mitigate the negatives of closing the ILF.

First off it argues that while ILF recipients could end up receiving less money directly, they may get more services paid for by councils.

In addition it says that the Care Bill, which should come into force in April 2015, will ensure outcomes in England are maintained through the introduction of national minimum eligibility criteria.

“Reductions in the monetary value of care packages or changes in the way those services are delivered will not necessarily lead to reduced equality of opportunity for users,” concluded the DWP’s assessment.

Certainly the Association of Directors of Adult Social Services (ADASS) believes councils can do a good job of taking over from the ILF.

“Councils are in a strong position to take up the work, with extensive experience of direct payments and personal budgets,” says John Nawrockyi, co-chair of the ADASS Disabilities Network and director of adult social services at Greenwich Council.

Devolved decisions

For now what will happen outside England is less clear as the devolved administrations are still mulling over their options.

The Northern Ireland’s health department, which opposed the closure, has yet to decide on what will happen to its 678 ILF recipients.

“The department is aware of DWP minister Mike Penning’s recent announcement that the ILF will close by June 2015. Health minister Edwin Poots wrote previously, expressing his concerns about the fund ending,” said a spokesman for the Department of Health, Social Services and Public Safety (DHSSPS).

“DHSSPS officials will be working closely with relevant stakeholders, including ILF users, their carers and family members, to identify an appropriate way to support those people in Northern Ireland beyond 2015 who currently rely on the ILF for their independence.”

“The department will carry out a full public consultation on any alternative proposals emerging before minister Poots would make a final decision.”

Things are also up in the air in Scotland, where 3,076 people receive ILF payments. “A final decision on how the ILF will be operated in Scotland is still to be taken,” said a Scottish Government spokeswoman.

“We are committed to ensuring that existing funding will be maintained for everyone who currently receives payment, subject to sufficient levels of funding being devolved from the UK government to the Scottish Government for this purpose.”

The situation is much the same for the 1,726 ILF users in Wales, where the government had preparing to publish its plans in November only to put the consultation on ice due to the Court of Appeal decision.

Reviewing needs

The truth is the exact impact of the ILF’s closure is unlikely to be known until after the new arrangements come in.

In preparation for the transfer the ILF is carrying out reviews of the care needs of those receiving its support, which it intends to pass onto local authorities.

Before the Court of Appeal judgement, it had already reviewed the situation of 6,138 people.

Not much will change for them beyond the ILF asking them, for a second time, to consent to their information being passed to local authorities, since the court judgement required the information already provided to be deleted.

“It will not be necessary to revisit those users,” says a spokeswoman for ILF. “Users who received a support plan from us following a transfer review visit should already have all the information they need to prepare them for the transfer to their local authority.

“We will also reissue all users with a copy of their support plan prior to closure, along with additional documentation to support them in the process of transition to their local authority.”

For the rest, work is already underway. The ILF visited a further 3,661 service users between early November and the end of February while the government was still mulling over its response to the court decision and it intends to carry out further work with them in the near future.

The remaining 8,530 recipients should have their situation reviewed over the coming months.

But while the review process is moving ahead, those worried about a postcode lottery are unlikely to be put at ease by the fact that local authorities did not attend one in four of the review visits, although this figure includes some users who refused to consent to councils attending the meeting.

For Disability Rights UK the focus is now on helping people prepare for the transition.

“The priority now must be to ensure that all ILF recipients get the best package possible from their local authority,” says Bott. “We will do what we can to assist through independent living information on our website and through our independent living helpline.”

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4 Responses to Preparing for life after the Independent Living Fund

  1. Valerie Day March 15, 2014 at 3:44 pm #

    My daughter has been at home with us for the past five years, previously she was in part-time residential care until she became very unwell, after consistent bullying from a particular care worker, with eventually, that care person attempting to cause her serious physical harm, there was no way she could remain where she was. My daughter has multiple disabilities, and because I have an ongoing illness, direct payments were introduced so there were carers coming to the house to support the situation. Since my daughter gradually gained confidence after her ordeal in residential care, an ILF package was set up and she was able to enjoy a social life, having a choice of when and where she went. Making friends and inviting them home with the help of her personal carer, I could go on but will simply say her life has been transformed, she is a new happy person. Everyone like her should have the opportunity of feeling real and experiencing life like the majority in the UK. Closing the ILF and leaving to Local Authorities to allocate funding is ridiculous, one of my main concerns is that the case worker from the ILF visiting us all, and talking things through, making sure the money is spent as it should be is brilliant, with only one person assessing the situation, ie Social Worker, there is no balance, only that persons view is put forward. We are going to do all in our power to fight this decision made by Ministers, who do not have a clue how life is for the vulnerable minority, having once again been made to await ‘the verdict’.

    • P Hubbard March 18, 2014 at 5:14 pm #

      I want to know how Valerie and her daughter pay the £100 contribution as my severely LD daughter can get ILF but is unable to get £100 over each week in order to pay this contribution. I really want to accept this to enable her more care hours; but how can she afford to pay this?

  2. Alan March 17, 2014 at 2:46 pm #

    Proves that the Government only Cares about money and not people. Personally I feel someone begrudges those with health issues a chance of a quality life because their family member lost out, “If I can’t have why should You”?

  3. P Hubbard March 18, 2014 at 5:20 pm #

    Government give my daughter benefits for years and this year they are trying to get 40% of it back each week. Either she gets the upper limit ILF and pays £100 as a contribution each week; or she accepts local council care and pays £83 approx each week and she is forced to go to the day centre, which she makes clear daily that she doesn’t want to now, after almost 40 years of attending there.

    Is ILF really that good?