The government's plans to cut the welfare bill by taking as many people as possible off incapacity benefits might be reassuring for the financial markets but for me is a disaster.
Let me explain. Some years ago I had multi-organ failure that resulted in brain damage. This left me with no sense of balance – it means I cannot walk without an aid and even when I do I walk painfully slowly. My fine motor skills – the ones that allow your fingers to do things with precision – are totally devoid, and my voice, if it sounded vaguely intelligible it would be an improvement.
I am on the highest rate of disability living allowance, thanks in no small part to my welfare rights adviser, who is fearful of his own job security. He has, after a prolonged battle, successfully argued that I don't need to attend job interviews or the harsh new employment and support allowance (ESA) medical interviews to assess my capability to work (which have been discredited in a report by Citizens Advice and leading disability advocacy charities).
Incapacity benefit was replaced by ESA in 2008. Less than 10% of claimants now receive the higher rate of ESA, for those deemed genuinely unfit for work. After a battle, I am one of the few on the higher "support" rate. The test is so harsh I hear it is forcing people to attend job interviews, with the threat of their benefit being cut altogether if they don't (or can't) look for work. And now the government is intending a further crackdown.
Recently, I have finally got the rehabilitation help I need, thanks to my new "personalisation" budget – of which I am one of the first recipients and a test case.
This rehab care is the kind where I am helped to regain lost skills, practise speech exercises and the carers are prepared to take risks and help me walk about rather than just do the bare minimum domestic duties such as cooking and washing. I received this rehab funding primarily because my neurological consultant considered it so important to my rehabilitation. He wrote a letter to the awarding panel explaining that I needed specialist support workers trained in brain injury for half of my care. I previously had one – risk adverse – agency providing all of my care.
In my experience, many carers do not seem to have received any specialist training and their main concern seems to be with signing the book so they get paid. When I would go for a shower they were under strict instructions: if I were to fall, watch me fall rather than risk injuring themselves.
When my case went before the adjudication panel the local authority funded the extra hours of specialist care on the understanding that the Independent Living Fund (ILF), a centrally funded body, would make up the shortfall and eventually fund all the specialist care, leaving the local authority with only the domestic care to pay for. Ultimately, then, the local authority would save money. But now I am told that the ILF has rejected my claim outright.
The ILF has run out of money. Only three months into the financial year it has closed its books to all new claims regardless of need.
Now I am afraid that the local authority, in order to meet "efficiency savings", will attempt to return me to my previous inept care provider. I have just received a phone call today from social services asking me to call them back. Obviously, they have heard about the ILF. My funding, which has only been in place for a couple of months, is now seriously in jeopardy.
I had a job. I was very good at it. I was a manager working in the health service. I was responsible for a team of staff and volunteers.
I miss feeling useful and making a contribution at work and, above all, I miss the interaction with other people. Instead of a carefree life I have only concerns. Instead of a future I have only a past. I miss the spontaneity and the laughter of my old life. The frustration of sounding like a robot who has learned to speak English from a badly-translated guide makes me lose all sense of motivation. Mainly, my days are spent doing repetitive exercises and trying to write short stories on the computer, but typing is painfully slow due to a lack of fine motor skills.
Having struggled through the labyrinth to get benefits, I am scared of the further, even more difficult medical assessments that the proposed cuts might mean. And I am scared of having my benefits cut. The welfare budget is to be slashed and I fear that the trapdoor is already underneath me.
http://www.guardian.co.uk/society/joepublic/2010/jun/30/incapacity-benef...
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Although the Independent Living Fund has many advocates, its decision to bar new clients from support has put its future in doubt. Gordon Carson reports
The Independent Living Fund has enjoyed widespread support among disabled people with the highest support needs across the UK since its inception in 1988. But, after two announcements on funding restrictions in quick succession and in a political environment dominated by cost-cutting, the future of the Department for Work and Pensions-sponsored fund is being questioned.
The demands on the ILF have escalated in recent years. From a £1.35m budget supporting 890 applicants in its first year, it had grown to more than 21,000 users and a budget of £351m in 2009-10.
As demand outstripped supply, the ILF said in March that applications would be limited from 1 May to clients receiving a minimum of £340 a week in council funding and working at least 16 hours a week, excluding those on means-tested benefits.
However, in less than two months following this, the ILF received about 2,600 applications, equivalent to 60% of its annual average, and could only grant 600. The pressure on the ILF budget was such that in June it said it would refuse all applications for the rest of 2010-11 and not meet the rising costs of existing service users' care packages.
Eligible applicants were turned away, something the ILF can do as a discretionary fund but had not done before.
Disability organisations worry that this could be a preamble to an eventual closure of the fund. Sue Bott, chief executive of the National Centre for Independent Living, says: "The fund has taken difficult decisions and people are now saying 'let's get rid of it'. But if that's the case we need to have a proper debate about how we fund people with high support needs."
She raises concerns about any transfer of ILF cash to councils.
"It really makes a difference to local authority budgets how many people with high support needs they have in their area," says Bott. "If it so happens it's 20, that can skew budgets and it's not reflected in the funding that goes to local authorities. People with high support needs should either continue to be funded from a national pot, or the funding that goes to local authorities should reflect the real number of people in that situation. We would be very concerned if the ILF just shuts up shop and all current funding is distributed to local authorities."
Bott does not want a repeat of the closure of the original ILF in 1993. Two new funds were subsequently created: the extension fund to administer the payments of people who applied from 1988-93; and the 1993 fund for new applications. The latter stipulated that social services should also provide a weekly financial contribution to help support successful applicants. (The two funds were merged in 2007.)
"Money was distributed [in 1993] to compensate local authorities who were expected to make a contribution," says Bott. "But it wasn't ring-fenced and the vast majority did not go to disabled people."
John Nawrockyi, co-chair of the Association of Directors of Adult Social Services' physical disabilities network, says local authorities would face significant extra pressures if the ILF were to close, as its budget is equivalent to more than 2% of England's annual adult social care spend of £16bn. He also admits that service users value the ILF because of its independence from local authorities. "If the fund were to cease, that would be a loss in itself," he adds.
Nawrockyi says the ILF's future should be considered by the forthcoming commission on long-term care funding.
Despite much support for the ILF, it is not without its detractors. A review in 2007 by consultants Bob Hudson and Melanie Henwood criticised the fact that it operated in parallel to local authority processes but with different rules. Now Henwood says she is aware service users support the ILF because it stands outside council control. But she believes there is "something to be said" for making local authorities responsible for administering ILF money, as long as there is a form of ring-fencing in place.
"It must be possible to set up a system to make it happen," Henwood says. "We would need transitional protection to make sure no one loses out."
The ILF's strategic policy director, John Fuller, admits its future is in question and says the fund's trustees are considering options that they would like to put to ministers. "Our trustees are determined to find the right model for the future," he says.
The ILF's future appeared to have been secured for the next two years by the Right to Control trailblazers, due to start this autumn. Announced by the Labour government, but also backed by the coalition, Right to Control aims to give disabled people choice and control over all aspects of their lives, enabling them to pool direct payments from a range of funding streams.
It will be piloted in eight local authorities for two years and was due to include Access to Work, adult social care, Supporting People and the ILF. But as Community Care went to press, the DWP could not confirm which funding streams would be included.
Marije Davidson, senior policy and parliamentary officer for Radar, says Right to Control should enable authorities to "reduce bureaucracy, save money and plough it into the direct support that disabled people need". She warns, though, that Radar would "fiercely oppose" any cuts to the overall budget for independent living.
And that is the nub of the problem: how to maintain spending whatever the model of control and delivery used. Even if Right to Control gives disabled people more mastery over their lives, they will still ultimately be affected by any cuts to constituent funding streams, whether they're called ILF or something else.
CASE STUDY
'ILF has helped me live independently and go to work' - Rania Nafeh Multiple sclerosis sufferer and ILF recipient
Rania Nafeh counts herself lucky that she started receiving money from the ILF in 2006, before tighter eligibility criteria were introduced in 2008 and this year.
Nafeh, who has multiple sclerosis and is a long-term wheelchair user, says the ILF is generally delivering an "excellent service for disabled people" and has helped her to live as independent a life as possible.
Before she received money from the ILF, Nafeh depended on direct payments from social services to fund her personal care. However, social services could not provide extra support when she needed it, so referred her to the ILF.
Funding from the ILF helps the west London resident pay for personal assistants, who provide personal care and carry out domestic tasks like shopping. This support also enables her to work 25 hours a week as an information officer at Westminster Action Network on Disability. "When I'm at work my personal assistants can come in and do things at home," she says.
Although her experience of the ILF is mostly positive, she encountered problems when she wanted to use its payments for physiotherapy and massage to help ease the effects of her condition. But, under the fund's terms, recipients can only use money to pay for personal care and domestic assistance.
"I need to do some sport to improve my health," says Nafeh, "but the ILF cannot understand that. They expect service users to contribute from their disability living allowance but I can't afford to do that."
Despite this issue, Nafeh still believes the ILF has a valuable role to play, although she says the funding restrictions will hit many disabled people hard. "They need to request more money from the government because many people will be disadvantaged," she says. "They need that money."
This article is published in the 8 July 2010 edition of Community Care under the headline "Last hurrah for the ILF?"
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The government will decide whether the Independent Living Fund has a future later this year after lambasting its Labour predecessor's handling of the UK-wide care funding agency.
The comprehensive spending review, which reports on 20 October, will settle the long-term future of the ILF, including whether it remains as a separate government agency or whether local authorities take on responsibility for administering its care payments for disabled people as part of personal budgets.
The latter route was recommended by an official review in 2007 but this was not acted on by the Labour government, a decision attacked today by minister for disabled people Maria Miller in a parliamentary statement.
She said Labour failed to "take a principled and strategic decision about the future role of the fund", despite a "comprehensive and independent review" by consultants Melanie Henwood and Bob Hudson.
Miller said Labour was also at fault for the funding problems the ILF faced earlier this year that led to it restricting future eligibility for its payments to people in work and then barring new applicants from claiming them for the rest of 2010-11.
It said the previous government made a "short-notice £11m reduction" in the ILF's 2010-11 budget which, combined with uncertainty over the ILF's financial forecasting, led to the decision to restrict eligibility criteria. However, the Labour government failed to approve the restriction until March, just before the start of the financial year.
Miller said: "The confusion and uncertainty caused by this chain of events is unacceptable."
She said the ILF had now put in place "a more robust methodology for forecasting future expenditure" and that she had asked the fund and the Department for Work and Pensions to ensure lessons are learned and appropriate procedures are put in place to ensure the ILF's budget remains on track.
The ILF's chair of trustees, Stephen Jack, said: "The ILF trustees welcome the opportunity to work closely with the minister, and look forward to contributing their ideas to best assist the coalition in considering and settling a future direction for the ILF."
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From October 2010 Jobcentre Plus will start reassessing the claims of people who are receiving Incapacity Benefit, Income Support paid on the grounds of disability and Severe Disablement Allowance to see if they are fit for work.
We will write to customers when their benefit becomes due for reassessment to tell them about the changes. We will also phone them to answer any questions they may have and find out if they need extra help. They do not need to contact us before they receive this letter.
Customers will then be sent a medical questionnaire to complete and return and this will be used to decide if they need to attend a Work Capability Assessment. It is important that customers provide as much detail as possible when completing the questionnaire as this will be used to help decide if the customer is entitled to Employment and Support Allowance (ESA).
If they need to attend an assessment, the customer will be phoned to arrange an appointment. They will not need to attend an assessment if a decision can be made on the information provided on the medical questionnaire.
Using the information from the questionnaire, the Work Capability Assessment and any other evidence provided we will then decide if they are entitled to ESA.
People will continue to receive their current benefit, as long as they meet the conditions of entitlement, until we have reassessed their claim.
If a customer does not return their medical questionnaire or attend a Work Capability Assessment when asked, this may affect their benefit.
If they can get ESA
We will phone and write to the customer to tell them they can get ESA. We will transfer their claim automatically and they will not need to do anything.
No one moving from their existing benefit to ESA will see a reduction in the level of their benefit entitlement at the point of change.
If we assess that an eventual return to work is realistic, we will place the customer in the "ESA Work-Related Activity Group". This means they will:
If we assess the customer's illness of disability has a severe effect on their ability to work, we will place them in the "Support Group". This means they will:
If they cannot get ESA
We will phone the customer to tell them our decision and what to do if they think it is wrong.
We will also discuss their options which may include the following.
They will need to make a new claim for Jobseeker's Allowance. We can transfer them at the end of the call or give them a number to call later.
They will not need to make a new claim, but the amount they get may change.
We will give them the phone number to claim Pension Credit and tell them what they will need to do.
If they think the decision is wrong
If the customer thinks the decision is wrong, they will need to get in touch with Jobcentre Plus within one month of the date of the decision letter. If they contact us later we may not be able to help. The customer, or someone else who has the authority to act on their behalf, can:
The Work Programme
We share the aspiration of many disabled people and those with health conditions who want to move into sustained employment. We plan to introduce a single Work Programme that will offer targeted, personalised help for those who need it most, when they need it. Customers moving onto Employment and Support Allowance and Jobseeker's Allowance will be supported by the planned Work Programme.
http://www.dwp.gov.uk/adviser/updates/ib-reassessing-claims/ib-reassessm...