DPAC: Independent Living Fund Respond to the Future of Social Care

Independent Living Fund Response to the Future of Social Care Posted: 12 Jan 2012 11:32 AM PST Independent Living Fund Trustees Press Need for Source of Social Care Support Beyond Local Authorites In their response to “Caring for Our Future”, the government’s social care White paper consultation, ILF Trustees stressed the need for a source of specialised support from a ring-fenced budget. Whilst acknowledging the need to further develop the current system and a new model of support, the response warned of poorer outcomes for disabled people without the influence of a national element to independent living support. The response highlights that “Despite attempts through the personalisation agenda for adult social care to support life in the community, with its primary focus on safeguarding and protecting ‘vulnerable people’ from being without basic levels of support, ASC supplied by Local Authorities has, in the experience of the most severely disabled people, been unable to effectively tackle their exclusion from society. “ In contrast to this, service users of the ILF have reported better outcomes and the value of having an assessor who has local knowledge but is independent of the local authority. The Trustees state in the response that their “firm view is that [a new model of support] needs to look beyond the mainstream funding of social care from local authorities”. The case is made for maintaining a national element to continue the ILF’s role in driving up standards from local authorities and pushing for consistency. To read the response in full please go to: http://www.dwp.gov.uk/docs/caring-for-our-future-response.pdf

Lords Defeat Coalition Posted: 12 Jan 2012 11:18 AM PST Lords Defeat Coalition: ‘The British public do not accept the idea that the banks screw up and very disabled people pay the bill’ Baroness Meacher, an independent crossbencher, told BBC Radio 4’s Today programme: “The British public do not accept the idea that the banks screw up and very disabled people pay the bill.” The Lords vote see the Government defeated by 234 to 186, a majority of 48, over a plan to limit to one year the time people can claim Employment Support Allowance. Peers agreed a move to replace the one-year cap with the ability for the Government to specify a limit of no less than two years. Lord Patel, an independent crossbench peer, said: “I am sympathetic to cutting the deficit, but I am highly sympathetic to sick and vulnerable people not being subjected to something that will make their lives even more miserable.” The Government was also defeated when peers voted by 222 to 166, majority 56, to accept another amendment by Lord Patel removing the time limit on contributory ESA payments from people receiving treatment for cancer. Employment minister Chris Grayling said the welfare state should be focused on supporting those with the most need quotes the BBC –DPAC agrees that it should too but we think Grayling is a bit confused over whose those might be – fortunately the Lords are not. Labour said the coalition was defeated for trying to “cross the basic line of British decency”. DPAC networks should congratulate themselves for the long months of protests and lobbying on Atos, WCA and on ESA since 2010- but the battle is not over yet. As responsible groups we know that the lobbying must continue when the amendments go to the House of Commons. Pictures of Tuesday’s protest can be found here http://www.demotix.com/news/999151/welfare-rights-vigil-opposite-houses-parliament-london and http://www.guardian.co.uk/politics/video/2012/jan/11/welfare-protest-lords-video

Defending the Independent Living Fund by Jenny Morris Posted: 12 Jan 2012 11:13 AM PST Many thanks to Jenny Morris for allowing DPAC to reproduce her blog below as taken from: http://jennymorrisnet.blogspot.com/2012/01/defending-independent-living-fund.html   In a discussion about my critique of disability policy, someone expressed surprise that I hadn’t written about the closure of the Independent Living Fund.  They were right that this is a serious omission from any analysis of the current attack on disabled people’s access to civil and human rights.  My only excuse is that every time I started to include the issue there was too much I wanted to say about the history and demise of the ILF.   The setting up of the Independent Living Fund in 1988 was an example of ‘progress by default’ in the heyday of the Thatcher government’s attack on the welfare state. This attack included abolishing something called the Domestic Needs Allowance.  This (unpublicised and therefore underclaimed) benefit was paid to a small group of disabled people who qualified for an addition to their Supplementary Benefit because they needed help with ‘ordinary domestic tasks’ like cooking and cleaning. Its abolition was part and parcel of the then Tory government doing what this Coalition government is doing – attempting to cut the benefits bill while claiming to be introducing new systems which would enable ‘better targeting’.  Then, as now, it was the House of Lords which mounted significant resistance resulting in a number of changes to the legislation, including the announcement by the government that they would set up a Fund to help ‘people who are severely disabled’, who were on low incomes, in receipt of attendance allowance, and who had to pay for their ‘domestic care’.      The government thought that only about 250 people would qualify; Disability Alliance thought it would be several thousands.  By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million.   As with Disability Living Allowance, the government found it had introduced a method of supporting disabled people’s additional costs which was popular because it increased autonomy and quality of life.  But, as with DLA, instead of welcoming the success of the policy, the government’s response to the larger numbers of people successfully claiming than expected, was to attempt to reduce the numbers of people qualifying. In 1992, the original ILF was closed overnight and while a new Fund was set up, eligibility was tightened up and disabled people had to already be in receipt of local authority funded services. Yet still its popularity grew, as did the principle at the heart of the ILF – giving people the money to enable them to purchase their own support.    In 1993 I published research[i], comparing the experiences of people who were dependent on traditional services for the help they needed with those who received grants from the Independent Living Fund or cash payments from their local authority (at that point these direct payments were technically illegal until the 1996 Community Care (Direct Payments) Act was passed).  The contrast was striking in terms of people’s access to privacy and a family life, and to the opportunities they had for participating in society: ILF grants gave people control over the support they needed and meant their human and civil rights were protected and promoted.   These findings were echoed by all the research carried out during the 1990s and in more recent years – ILF grants have given people choice and control and have, as the most recent review found, been particularly good at reaching people with significant learning difficulties, who made up almost a third of those receiving grants in 2006   So why close it down?  The main incentive was of course the Department for Work and Pensions’ need to offer up savings to the Treasury in the context of cutting the deficit.  In looking for reasons DWP argued that “an independent discretionary trust delivering social care is financiallyunsustainable”.   The ILF was not a perfect system: amongst other things, it discriminated against older people (by imposing an upper age limit of 65 at the point of application) and against those with the highest support needs (by imposing a weekly limit on how much support can be funded). The independent review carried out in 2006 recommended – in the longer term – merging it into a new system of delivering social care based on the individual budgets which were being piloted at that time.   And the ILF is undoubtedly an anomaly.  In its initial phase it was entirely part of the national social security system but funded needs which were otherwise met by locally delivered social care systems. Since 1992, it has been more of a hybrid in that, while it is funded within the national social security system, the gateway to an ILF grant is through the locally delivered social care system.   When I was working with the Prime Minister’s Strategy Unit, on what became Improvingthe Life Chances of Disabled People,   the logic of our analysis of independent living and the policies needed to deliver it led us to discuss whether there should be a national delivery mechanism – akin to the Independent Living Fund.  We drew back from this, partly because of political pragmatism but also on the grounds that it would undermine local democracy.    I’ve never been entirely happy with this latter reason. It is only a historical accident – not because of considered policy design – that disabled people’s additional costs are currently addressed by two entirely different systems: Disability Living Allowance, non-means-tested and delivered through a national social security system; and community care (whether as services or direct payments) means-tested and delivered through a local system subject to local and professional discretion.   The Dilnot Commission, in response to the years of evidence of a ‘postcode lottery’ in access to social care recommends a national system of assessment.  We already have one – it’s called the Independent Living Fund.   For years, there have been attempts to encourage local authorities to use direct payments (and now personal budgets) to enable disabled people to have choice and control over the support they need to go about their daily lives.  Yet there remains a postcode lottery of not only the level of support available but the extent to which an individual can have control over the resources available.   As Colin Barnes has written, “One way out of this mess would be to take the distribution of direct payments out of the hands of local authorities and centralise it. This could be achieved by setting up a new national body similar to the ILF and accountable to organisations controlled and run by disabled people such as the National Centre for Independent Living (NCIL)”. [ii]   In the next few months the government will be publishing a consultation on the Independent Living Fund, and its long awaited White Paper in response to both the Dilnot Commission and the Law Commission’s report on community care legislation. The debate so far has mainly been related to how we can fund adult social care but there is an equally important debate to be had about the principles of delivery.  I would suggest, as a starting point, these should include:   - nationally consistent entitlements: ‘postcode lotteries’ are unjust and create disincentives to move in pursuit of employment opportunities or because of family commitments;   - universality, i.e. no means-test: disabled people face additional costs and a modern welfare state should fund these costs, out of general taxation, to create a level playing field;   - choice and control: self-determination is a basic human right which disabled people cannot experience unless they have choice and control over the support needed to go about their daily lives.   The Association of Directors of Adult Social Services told the Joint Committee on Human Rights Inquiry intoIndependent Living that, in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.  This is the reality facing disabled people and which must be addressed by the government in its plans for the future of adult social care.   In the meantime, I would urge people to sign Disabled People Against the Cuts’ (DPAC) letter which urges the government to carry out a separate consultation on the ILF (rather than just including it in that on future funding of adult social care), and to continue the separate funding that the ILF provides. You can get a copy of the letter and sign up by visiting the DPAC website or emailing mail@dpac.uk.net.   [i] Morris, J. 993. Independent Lives? Community Care and Disabled People, Macmillan.   [ii]  Barnes, C. 2007.’Direct payments and their future: an ethical concern?’ in Ethics and Social 1Welfare, 1(3), pp. 349-354.

Social Welfare Advocacy - Response from Sue Marsh

Social Welfare Advocacy

RESPONE FROM SUE MARSH (Diary of a Benefit Scrounger) REGARDING GOVERNMENTS RESPONSE TO THEIR DEFEAT IN THE HOUSE OF LORDS YESTERDAY.

"When we started campaigning, we had four very, very clear objectives. There are other things that urgently need to be changed in the Lords, and we thank them for their forensic attention to detail that means these other issues are not being ignored.

Today, the DWP and the very highest ministers in government will be everywhere trying to mitigate the damage of yesterday's defeat. You will hear their misrepresentation of us on every TV show, in every paper. You will cringe at every inaccuracy, burn at every line of spin.

Mostly, I know that you will burn at the injustice of not being heard. You will wonder - as we have always wondered - why the mainstream media persist in ignoring truth and reason and evidence. Journalists will not be queueing to ask how the defeat came about, to ask the campaigners who almost certainly made it happen.

You might burn too, when you hear Labour claim this as their victory.

None of that matters. The public were never ours to lose. We have come this far without them, by making reasonable, calm, evidence based arguments to the people who really matter, the people with all the power. We have come to this point by engaging with politicians of all colours, by owning social media and using it to make our own news.

Today, you have truth and justice on your side. The Government do not. No Government is defeated on the scale we saw last night, with the very strong majorities we saw, by accident. It was the undeniable injustice of the Government's plans that convinced the Lords.

Do what we do best and make our case honestly. Re-post articles, write short statements, blog, contact friendly journalists and see if they will drop a little of the DWP spin angles. Contact supporters and let them know we won and what it means. Own the internet. It's all we have.

Perhaps a short note to some of the peers you lobbied thanking them? We have been insistent and a thank you is always nice.

Trust in our case, trust in the evidence we have presented, but most of all trust yourselves. Governments are not defeated often in the way ours was yesterday and you did it. Without the TV news, without much of the printed news, without an opposition, whatever Labour MPs claim today. The Labour Lords worked tirelessly for us however and they deserve a huge thank you.

The following briefing is one we posted months ago, that outlines our key concerns with the welfare reform bill and the measures affecting sick and disabled people today. Feel free to use it, share it in any way you like.

The Government - and media - might like to notice that we have already won the first one, The Spartacus Report directly addresses the 2nd one, and last night's vote casts huge doubt on the third.

We are not an aimless campaign group with no real goals, we are not unreasonable or aggressive.

We are the sick and disabled of the UK. We are Spartacus.

Briefing of our 4 main objectives :

Whilst some of the bill might be helpful, I want to be very clear today about which parts sick and disabled campaigners feel are unacceptable :

1) Removing Disability Living Allowance mobility payments from adults in residential care.
An adult who needs to live in residential care will have extensive needs and are often amongst the most severely disabled. The mobility component of DLA afforded them their only freedom, allowing them to choose to fund a power wheelchair otherwise unavailable on the NHS, or to pay for taxis or transport to get out now and then. Taking this away would leave the most vulnerable disabled people effectively housebound. There is no support for this change anywhere - charities, independent benefit reports and even the government's own advisers have called for this to be removed from the bill

2) Scrapping DLA entirely and replacing it with Personal Independent Payments (PIPs).
DLA is a very effective benefit with fraud rates of less than 1% (DWP own figures) It is already incredibly hard to claim and the qualification criteria are very narrow. The government have announced that DLA claimants will also soon face assessment and that the overall number of claimants will be reduced by at least 20%. The government's own advisory committee concluded that they could find no justification for this reform and have asked for clarification from the government.
If a benefit is already very efficient, yet a government announce a 20% cull before a single assessment has even taken place, we conclude it can only be a cost cutting measure that will ignore genuine need.

3) Time limiting contributory Employment Support Allowance (cESA, previously Incapacity Benefit) to 1 Year
Many people who need to claim ESA have "long term variable" or chronic illnesses such as MS, Parkinson's, Bowel Disease, Leukaemia or severe Mental Illness. These conditions often do not go away after a year and sadly, often get worse over time. A high percentage of those with these conditions are being found "capable of limited work" under ESA, and not qualifying for unconditional support (known as the Support group who are not affected by the time limit) but after 1 year, if they have a working partner, they will receive no ESA whatsoever. All of their benefit will simply be stopped, a loss of just under £5000 a year.

4) ATOS assessments are "unfit for purpose" and a better way of assessing need must be implemented. ATOS are the private company charged with assessing over 1.5 million sick and disabled people during this parliament.
-The assessments are not necessarily carried out by a doctor.
-40% of rejected claims are going to appeal with up to 70% of those decisions being overturned.
-Assessments are humiliating and degrading causing great anxiety to those genuinely in need.
-Just 7% of claimants are being found unfit to work.
-Testimony from Consultants and GPs is often ignored entirely.
-People are dying before lengthy appeals can be heard.
-Even the professor who designed these assessments calls them a "complete mess"
-The descriptors exclude many serious, long term conditions or disabilities. This means that many serious conditions are simply unlikely to qualify.

There are other problems with the bill - capping housing benefit; re-classifying "mobility" so that those who use their wheelchairs too efficiently can be classed as "fully mobile"; removing an age related payment from ESA; scrapping the Independent Living Fund; cutting community care provision; cutting the Access to Work programme and many more - all of which will hurt sick and disabled people disproportionately, but the four points above MUST be addressed before the Welfare Reform Bill is passed.
They are causing or will cause real hardship.
They will not achieve savings as pressures will only be shifted to the NHS or social care provision.
They will increase homelessness, mental illness and poverty amongst this most vulnerable group of all
They will leave many in genuine need without support
They reduce the independence, standard of life and dignity of those we have a basic duty to protect."

Closure of UK Independent Living Fund will cost  Billions-Debbie Jolly Posted: 07 Jan 2012 12:29 PM PST The cost to the state of scrapping the UK Independent Living Fund (ILF)  will be over 154 million pounds per year[i] in institutional costs based on  current levels of 21,000 people that receive ILF. If we accept that a further  41,000 people would have been entitled to receive ILF since it closed its  doors to new applicants in June 2010 the figure rises to a minimum of over  462 million. The Independent Living Fund (ILF) allows ‘severely disabled’ people to stay  in their own homes and out of residential institutions through the employment  of personal assistants. The likely closure of ILF in 2015 for existing applicants  will cause more misery to disabled people and cost the state billions with many  disabled people being forced into residential institutions. The cost to the state  of scrapping ILF is likely to top over 462 million pounds per year in institutional  costs. These figures do not include the loss to the exchequer of tax revenues  disabled people generate by employing personal assistants, nor extra health  service costs that will be incurred by the closure of ILF. While the Dilnot report suggested that individuals would pay a percentage of  their own institutional costs in the future, the majority of disabled people will  simply be unable to do that. Therefore the cost goes to the state or more  specifically the tax payer. The stated purpose of the closure of ILF is claimed  to be cost savings, yet figures based on potential predictions show the opposite  will be true. The government’s own social care health committee say: ‘Inevitably the cost  of care is not static, 2011 figures had increased by 5.1% and 3.3% respectively  from 2010. Many care homes can cost more than £50,000 per year’. However,  given the loss of ILF and restrictions on many local authority eligibility criteria to  ‘critical’ to be eligible for social services – more and more disabled people will find  their living, economic and social conditions deteriorating with additional adverse  effects on their health. A reliable 2010 residential cost estimate is given in the Scottish governments’  quoted estimate of £72,000 per year based on ‘Service User A’ who is ‘a 59 year  old male who has multiple sclerosis’.  The cut backs on ILF, Disability Living  Allowance , incapacity benefit changeovers and cuts in local authority funds of  up to 30% make it more likely that this particular ‘service user’ and others like  him will be heading for the more expensive option of the residential home. Service user A is 59 and would be in residential ‘care’ for a number of years,  based on the average life-span arrived at by the governments’ own Office of  National Statistics. The cost to the state would amount to 15 million one  hundred and twenty thousand over the lifetime of ‘service user A’ at 2010  prices. The government appear intent on contravening article 19 of the UN Convention  on the Rights of Disabled Persons to live independently in the community with  the right to employ personal assistants, as well as the European Convention on  Human Rights and the diluted Equality Act 2010. The stated purpose of the  closure of ILF is claimed to be cost savings, yet the figures show the opposite  is true. £37,888 per annum per person is the difference between receiving current  average payout of ILF at 2011 and the cost of residential care at 2010 cost  levels, excluding future inflation and excluding revenue from tax receipts of  personal assistants employed by disabled people using ILF. 154 million two hundred thousand per year costs are based on the current  number of 21,000 users of ILF@ £74,000 per year in institutional costs per  person.  ILF has been closed to new applicants since June 2010. The overall  figure of those in the qualifying bracket for ILF is likely to be far higher than  the figure of 21,000 people stated by the coalition. The Closure of the Independent Living Fund has been eclipsed by arguments  on the change from Disability Living Allowance to Personal Independence  Payments, Atos and the Work Capability Assessment and Welfare reform as  the priorities. That’s a lot for UK disability activists to fight, but it’s time to  bring back the closure of ILF and its impacts. Sign Disabled People against Cuts (DPAC’s) letter on ILF here  Originally posted on http://www.digitalvoice.eu/ [i] Figure based on a cost of 74,000 per year for institutional costs

Vigil & lobby of Parliament:oppose Welfare Reform  Bill-1pm Wed 11 January Posted: 07 Jan 2012 12:22 PM PST     No going back to Dickensian days – defend benefit rights, stop evictions   Vigil & lobby of Parliament   1pm Wed 11 January Oppose the Welfare Reform Bill & benefit caps.   Cap greedy landlords, not low-income people!   Meet opposite Parliament – Lords’ entrance  Abingdon St SW1   All Welcome   On 11 January, the Lords’ debate on the Welfare Reform Bill continues.   The Bill threatens basic entitlement to housing and other benefits – a  roof over our heads.  Benefit cap of £500 a week including rent: larger families including  those with informally-fostered children, single mother families, households  with disabled people, families of colour more likely to be on lower incomes –  face eviction from central London and other cities if the cap goes through.   For more see here. The housing benefit cap is already forcing people to go without food  and heating to pay the rent, or into unbearable overcrowding. Like in the  US , people will end up homeless, destitute, begging and on the street. The Social Fund relied on to furnish a new home or cope with emergencies –  children coming back from care, women fleeing domestic violence, people  coming out of hospital and prison – is being abolished.  People won’t be able  to start a new life or escape a violent relationship; they’ll be at the mercy of  loan sharks. Disabled children and adults face all-round cuts: to disability benefits,  benefit additions and concessions – a return to hardship and charity. Child Benefit– which all mothers earn and all children need – will be taken  from the poorest families by the benefit cap. Income Support, which recognises the contribution of mothers and other  carers, is being abolished and replaced with back-to-work conditions as soon  as the child turns one. Protest forced the government to drop plans to cut mobility money for people  living in residential homes.  But other cuts to disabled children and adults are  still in the Bill.  On 14 December, after lobbying and testimony from people  affected, the Lords defeated government moves to cut housing benefit by  £12-22 a week for Council tenants who have a spare room. Come and raise your concerns on 11 January.  Bring placards with your  organisation’s name and issues you are concerned about. Lobby the Lords –  support amendments to keep Child Benefit out of the benefit cap, extend  concessions for women fleeing domestic violence, ensure immediate benefit  payments for people coming out of prison, and Zacchaeus 2000 amendments  to protect claimants from unliveable benefit repayments, sanctions and bailiffs  -   Lobby your MP; contact them to make an appointment or write to them about  your personal situation – find your MP here.   If you are unable to come on the day, ring them or write, for Lords’ addresses  see here; and sign the epetition here. For more info about the day, contact  SMSD and the Zacchaeus 2000 Trust smsd@allwomencount.net   0207 482 2496   PaulNicolson@z2k.org  07961177889