Fears of postcode lottery as Independent Living Fund closes today

Transfer of monies to local authorities puts spotlight on how the most disabled people should be supported

Photo: Mark Hunter/Rex

It has been planned since 2012 but today’s closure of the Independent Living Fund (ILF), which helped severely disabled people top-up their social care support, is still a source of ongoing uncertainty for both disabled people and local authorities.

The fund, which was administered from central government, is being transferred to local authority budgets in England based on what recipients in their area were allocated, minus a 5% “top slice”.

‘Problems should have been envisaged’

The scheme has been closed to new applicants since 2010. While many in the sector agree with the move to a single system there are widespread fears the current climate of cuts and lack of direction from central government will create an unfair postcode lottery.

A freedom of information request by Disabled People Against Cuts’ #SaveILF campaign in April found just 28 councils in England were ringfencing their allocation to individual ILF users. Another 60 stated they would ensure the money stayed in adult social care but 31 were not planning to ringfence it at all.

Some said they were waiting to see how much money they would receive as only indicative amounts, based on ILF payments from 2013 are known. A Department for Communities and Local Government spokesperson said: “we will confirm Independent Living Fund allocations shortly.”

The Association of Directors of Adult Social Services (ADASS) is “concerned” about the transition process. President Ray James said:

“We are aware of some problems with the process, but these would have been, and should have been envisaged by central government when taking this course of action.”“We have already been taking on extra assessment responsibilities under the Dols [deprivation of liberty safeguards] judgement, and we cannot move faster than our finances allow.

Want more information and tips for working with former ILF recipients?Community Care Inform subscribers can read our guide to the closure of the Independent Living Fund which gives full background to how the ILF worked, what social workers need to do now to comply with the Care Act and case examples.

Person-centred transfer reviews

New national eligibility criteria under the Care Act 2014 have also put additional assessment demands on authorities.

In responses to DPAC’s investigation and a similar freedom of information request by Disability Rights UK at the beginning of the year, some local authorities said they were waiting to reassess people in line with the Care Act.

One director said there had been concerns that pre-emptive reviews of needs might lead to people being “assessed down” before the funding was transferred, affecting the amount allocated.

Sue Bott, director of policy and development at Disability Rights UK, is concerned that no organisation is responsible for monitoring the impact on former ILF recipients. The charity is aware of some appeals against what local authorities are offering.

Bott says she  every sympathy with what hard-pressed departments are trying to achieve, but believes local authority systems are not set up to support people with the highest needs.

Looking ahead

Martin Farran, executive director of adults and community services in Barnsley, is worried the funding will eventually disappear altogether. He compares it to the closure of the local welfare assistance fund, which had also been operated centrally by the Department for Work and Pensions (DWP).

“Government have said that from 2017, we will still get a proportionate amount [to former ILF grants in each authority]. However, it could follow the pattern the local welfare assistance scheme which councils took on from the DWP and delivered much more efficiently and creatively even with the 20% top slice and then they pulled the plug on it completely.”

England had around 13,000 recipients of the ILF. In other parts of the UK, the devolved administrations have handled the closure differently. The Welsh government has transferred a special grant to local authorities which protects the amount users receive until March 2016.

Scotland has set up a successor body to continue delivering the fund to the administration’s 2900 recipients. The Scottish Independent Living Fund Company will also administer payments to ILF users in Northern Ireland.

Two groups

Most people in England affected by the closure of the fund will already have care packages from their local authority. However, “Group 1” ILF users who joined the scheme between its initial set up in 1988 and 1993 and receive a larger maximum amount than those who joined between 1993 and 2010)  may not have an up to date assessment of their needs.

This has led some council leaders to stress there should not be an assumption that disabled people will lose out due to cost pressures.

Positive outcomes of assessments include establishing that people are entitled to more care, can claim additional benefits, consolidate direct payments and identifying community support that could meet needs more effectively.

‘We still haven’t heard what’s happening’
David* is 34 and has cerebal palsy. He was receiving the Independent Living Fund and direct payment from a local authority in the south of England. His mum Carole* describes their experience and concerns.
“David uses the money to employ five carers/personal support assistants on a rota of 24 hour shifts to give him round the clock support.
“He is very busy and away from home quite a lot with his charity which visits schools to help develop positive attitudes to disability. The ILF meant carers can stay with him to meet his toileting, bathing and feeding needs. They act as personal assistants, secretaries – anything that’s needed to support his daily living.
Carole praises the communication from the ILF, but a week before the changeover says they still don’t know what David will be entitled to. They know the ILF money is not going to be ring fenced in their area.
She is worried, particularly after an assessment with a contractor from Capita in February, David had letters saying he would need to pay £66.21 week for his support and to set up standing order. Two weeks later a letter was sent saying this correspondence was sent in error.
“David uses every payment in full so it will be very difficult to continue living as he does,” Carole says.
*names have been changed

‘Institutionalised at home’?

One of the most widely held fears about the end of ILF support is that severely disabled people could end up being “institutionalised” in their own homes. If they can only afford basic care they may be reduced to spending their days sitting in front of the TV.

“If people can’t get out of their house or be active in their community, that’s not independent living,” Bott points out.

However, Iain Macbeath, director of adult social services at Hertfordshire suggests the ILF could in some instances have created that very situation and described a woman who had received the ILF for many years:

“She and her husband were almost confined to their home as they had this enormous team of workers –  they had essentially given over two rooms of their house to the carers. They were understandably defensive and worried they were going to lose this money. Now she has two days a week outside of the house doing something completely different. Taking the money out of the equation, we have been able to make a positive change.

“For some people, high levels of home support are appropriate and we wouldn’t want to take that away. But when we can have non-defensive conversations about what other people have been able to achieve, it really fires their imagination. Often those things don’t cost anything or cost a lot less because there are opportunities available in the local community.”

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