See video of the excellent John Kelly speaking on BBC news on #ILF August 7th
See video of the excellent John Kelly speaking on BBC news on #ILF August 7th
Disabled people have been expressing their disquiet at the news that the Independent Living Fund (ILF) will cease to exist in 2015, and that the money will be transferred to Local Authorities. To date, out of the 153 surveyed Local Authorities and from 106 responses, only 10 Local Authorities have said they will ringfence the transferred funds to ILF recipients, which means that in all other areas, ILF recipients face a potential reduction of their care packages. How is it likely to happen?
An interesting article was published this morning by Joe Halewood (@SpeyeJoe): http://speye.wordpress.com/2014/08/09/dhp-dubious-hoodwinking-practices-or-how-ids-pulled-the-woolsack-over-the-courts-eyes/
which shows that 16% (UK average) of Discretionary Housing Payments (DHPs) allocated by the Department of Work and Pensions (DWP) to Local Authorities to mitigate the impacts of welfare reforms, and specifically of the infamous bedroom tax have been awards unrelated to welfare reforms. See Table 5 and 6 here: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/322455/use-of-discretionary-housing-payments-june-2014.pdf
It would be interesting to know what the money was spent on, but more to the point, DWP has twice relied on the DHP argument to win a legal case against claimants challenging the bedroom tax policy, and although DWP’s spokesperson said that the government has put in £345m to mitigate the bedroom tax, the figures shown in the Table 5 and 6 not only disprove this but also show that out of the money disbursed, 16% of the allocated funds have been used for awards totally unrelated to welfare reforms. This shows that disabled people are right to be worried about the future of the transferred ILF funds and about the willingness or unwillingness of Local Authorities to allocate these funds to disabled people who have been assessed as having the greatest needs. The ILF should be retained until assurance is given that these people will not see a reduction in their care packages.
DPAC have had an odd kind of non-relationship with DRUK. We’ve disagreed about many things. For example, DPAC is for saving ILF, DRUK’s Sue Bott suggests this is something we should probably forget about, and that ‘Whilst the ILF has benefited many disabled people, claims that it has been at the forefront of independent living are a little exaggerated’. This is not the view of ILF users. See their stories, their lives, their experiences It is amazing that anyone can believe that passing ILF to local authorities who already say that without ring-fenced funding many ILF users will lose support and/or be institutionalised is something we need to accept while we all get together to talk about ‘new visions’.
The DRUK conference dedicated to a ‘new vision’ for independent living is also a confusing affair, not only are they embracing Simon Steven’s approach ( He who accused DPAC of murdering disabled people and was dropped from Leonard Cheshire’s sponsor program because of his outright abuse to other disabled people), but one of their advertised partners for this conference are Craegmoor .
Craegmoor are part of the Priory Group owned by Avent International which is a US Equity Company- changing times you may say-and you’re right. Maybe that’s what these new visions are about: capitalising on the market, private equity companies taking public money, and disability organisations getting in on the act- maybe neo-liberalism rather than disabled peoples’ rights and equality now make up ‘new visions’ of independent living
Craegmoor ‘s target market are those labelled with autism, learning difficulties and mental health issues. They take 85% of their funds from public funds. Craegmoor’s web site boasts of its residential homes:
We provide understanding and support for people with learning disabilities, autism and mental health problems in a variety of settings based on the individual’s abilities and needs. Our nationwide residential care services support people to develop the skills they need to live as independently as possible’.
Wait, since when were residential homes part of independent living? Weren’t these the very oppressions that early activists fought to get out of, and current activists (and ILF users) are fighting to stay out of?
Their brochure goes further:
Craegmoor is part of the Priory Group of Companies. From education to hospitals, care homes and secure facilities, the Priory Group of Companies offers individually tailored, multidisciplinary treatment programmes for those with complex educational needs or requiring acute, long-term and respite mental healthcare’.
Treatment programs? Not sounding very independent living or social model. As well as residential homes, secure ‘hospitals’ and segregated schools. It all sounds very daunting.
But there’s much more on the Priory group of companies too which is even less palatable concerning cover-ups and abuse. Until July 2013 Phillip Scott was Chief Executive if the name isnt familiar, he was also the Chief Executive for Southern Cross. Itself a subject of inquiry on institutional abuse and 19 unexplained deaths Craegmor say they transform lives, but in what way?
In May 2013 there was Melling Acres, ‘where inspectors reported major concerns about the care and welfare of its seven residents – care plans were poor, with scant information about physical health needs, there were limited activities and a lack of advocacy to enable people to express concerns about their care’. In September 2012 ‘following an anonymous tip, inspectors found residents at risk of abuse in Lammas Lodge, a home for young adults. There were not enough staff and what staff there were, inspectors found, were not properly trained to meet residents’ complex needs. There were six major areas of concern, including care and welfare, medication and safeguarding. The home, which was warned it must improve or face closure, has since been given a clean bill of health by the regulators’. Both homes were registered under Parkcare Homes’ so neither Priory or Craegmoor got the fall-out despite ownership.
This was not the case in 2012 when concerned relatives hid CCTV cameras in the room of Highbank hospital in Bury Manchester to reveal abuse by staff, not so with the Bentley Court home in Wolverhampton suspended by the council for what it called ‘safeguarding issues’ in 2010, a council that stopped sending those with dementia to Bentley Court, and not so in 2012 when what was described as the ‘Priory mental hospital’ in Windes on Bennet Lane was closed due to not meeting 10 standards of Government quality and safety including: Patients not being fully protected from the risk of abuse and their privacy, dignity and independence not being respected, staff not receiving necessary training, a lack of systems to assess and monitor the quality of the service provided, care plans did not always cover patients’ needs. There were also reports of patients attempting to escape during supervised visits into Widnes town centre.
So as said definitely NOT independent living.
In 2004 the then CEO of the Priory group Chai Patel said ‘My view is, if there is ever a conflict that involves choosing between care and profit, then we should not be involved in that environment,’ Given the examples above it seems profit is the defining factor.
It didn’t take long to find this information, it didn’t take long to realise that these are not the partners who should be with any organisation claiming to support independent living, even ‘new visions’. So maybe the question that needs to be asked is what exactly do DRUK support?
There are a few clues, in a recent blog piece by DRUK (dated 16th July) mentioning a very good Guardian piece by independent living activist John Evans, an ILF user, the last paragraph says: ‘Sue Bott, Director of Policy and Development at Disability Rights UK, has written a new blog which also discusses the role of the ILF but proposes that disabled people should concentrate their campaigning towards achieving a single integrated system that assesses people’s needs and allocates assistance and support based on the outcomes people could achieve in their communities and contribute to society’.
John Evans says everything we need to know-we have a vision for independent living and we already have a model forged by international independent living activists. There is nothing wrong with that model. There is no reason to stop fighting for it, abandon it or develop ‘visions’ or hallucinations of lesser systems in which we divide disabled people by perceived contributions to society-all disabled people are of value, all deserve to be supported. It is the ILF model that needs to be built upon and expanded to all-something that promotes real independent living.
The fact that a so-called user led organisation is putting forward anything different with the spectra of institutionalisation added to the mix is a tragic condemnation of all that disability activists have ever worked and fought for. We are appalled that DRUK are willing to sacrifice disabled people’s futures in this way and sadly can only assume this is to ensure on-going funding from the government.
follow @dis_ppl_protest for more
If you want to email DRUK you can do so by emailing: firstname.lastname@example.org
The ILF has transformed People’s lives. The Independent Living Fund does what it says on the tin – it liberates people who wouldn’t otherwise be able to, to live independently. It lets them make choices about how they live – things we often take for granted: when to get up or go to bed, what and when to eat. It allows them to work, to be active in the community and to live in their own homes.
I challenge the Minister today to guarantee that those currently in receipt of ILF won’t become less independent as a result of his decision to close it in June 2015. Because that’s what people fear. That’s what they are frightened of. They fear losing their jobs, losing those staff they employ to support them and losing their independence. They fear being forced out of their homes and into institutions.
The Minister may say he’s passing the monies and responsibility to Local Authorities but this will not ease their fear. And he is rather naïve if he thinks that absolves him from his responsibilities for this decision. I’m afraid he can’t get away with devolving responsibility and blame for the consequences of his decision to others. That’s why I ask him for these guarantees today. For a start Disabled People Against Cuts calculate the current annual cost of support at around £288 million yet the government only identified £262 million to transfer to local authorities. And it gives no reassurances that this money will be ring fenced to be spent only on supporting disabled people to live independently rather than absorbed into broader council budgets.
According to SCOPE £2.68 billion has been cut from adult social care budgets in the last 3 years alone, equating to 20 per cent of net spending. This is happening at a time when the numbers of working-age disabled people needing care is projected to rise by 9.2% from 2010 to 2020. In a recent survey 40% of disabled people reported that social care services already fail to meet their basic needs like washing, dressing or getting out of the house. And 47% of respondents said that the services they receive do not enable them to take part in community life.
So it’s not surprising that people are desperately worried about their future.
The worry is that continued underfunding of social care will mean the care system will simply not be able to support disabled people to live independently. The lack of reference to ‘independent living’ under the definition of the ‘well-being principle’ in the Care Bill which local authorities will need to take into account when providing care further fuels this anxiety.
And it’s not just people in receipt of ILF who are worried – it’s their friends, their carers and their families too. The cases of two of my constituents illustrate this well.
Ashley Harrison is a Scunthorpe United fan like me cheering on the Iron at Glanford Park. At 10 months old he was diagnosed with cerebral palsy. He will turn 30 this year. Ashley has lived in his own bungalow since 2006. The ILF allows him to employ his own team of carers. Ashley is an inspirational man, a fighter but he is worried that the control over his future is being taken away from him.
His mother says:
‘The closure of the ILF would be nothing less than devastating for us as a family. Since Ashley was awarded his ILF allowance the whole family’s lives have changed for the better. ILF understands Ashley’s needs and always do everything they can to constantly improve Ashley’s life and enable him to live independently.
As a family naturally all we have ever wanted is the best for Ashley, which the ILF has helped us achieve. The ILF has always seemed to be the leading and positive force at meetings ensuring that social services match and meet Ashley’s needs. Without the ILF we all face a very uncertain future. The uncertainty that Ashley faced in his early years prior to receiving his ILF award have been daunting, frustrating and of course a constant battle with social services.
The alleged “smooth transfer” over to social services is already proving to be nothing of the sort. Each and every meeting we hold (which are incredibly frequent) leave us having to justify Ashley’s needs as a disabled person. The assessments they ask us to complete are totally unsuitable for the severely disabled.
All of the disabled people living independently with the help of ILF are living their lives to the full. The fear is that if ILF closes these people will lose their human rights and dignity to live their lives as they should.
As a mother who’s fought the last 30 years for Ashley to have the life he wants and of course deserves, I dread to think what the next generation of disabled people will have to endure without the positive support of the ILF.
I beg you to listen to myself as a mother of a disabled son and also listen to all those disabled voices who deserve to be heard.
Give each and every person the ability to live and achieve their dreams just as you and I can.
The Paralympics just proves how amazing disabled people can be!!!’
Jon Clayton is also in receipt of ILF. Like Ashley he has carers whom he employs who understand his disability. His sister writes
‘My brother Jon is quadriplegic having been involved in an accident which was not his fault at the age of 18. He is now 54.
He is one of life’s truly inspirational people; an accomplished mouth artist – a gift he only knew he had after his life changing accident- living independently in his own home. He freely gives his time mentoring other disabled persons, helping them come to terms with another life. A life without limbs. A life without walking.
He has always sought to live as normal a life as possible. Having gone through marriage, divorce, being a step father, losing a partner.
He is both ordinary and extraordinary.
He relies heavily on his full time carers. Carers who he personally has ensured are trained to an appropriate and exceptional level to look after a person with specific and defined needs. One false move and he could (and has) spent 18 months bed bound with a pressure sore at the expense of some ill trained nurse.
His carers are trusted to ensure and give a high level of care, entrusted with the most personal of tasks from catheter changing, toileting, dressing etc. This has been part of Jon’s life since his accident. Something he has taken on with humour and dignity.
If the ILF is removed Jon will be unable to live independently. Being able to engage in what you and I would consider a normal life. He will be unable to travel, have holidays, visit family, visit friends.
The ILF has enabled independence. Given life, where life seemed over.
I would therefore urge you to do all you can to prevent this life enabling function – the ILF – from being eroded’
A fundamental concern for Jon, Ashley and others is whether they will be able to employ their specialist staff in the future. North Lincolnshire Council’s responded to this question on 9th June 2014:
‘We appreciate this situation may cause you concern as an existing Independent Living Fund customer and would wish to reduce any worry or anxiety you may have.
Allocation of future monies will be based on your updated assessment and support plan and on future Local Authority funding so at this stage we cannot give any specific guidance on the amount of monies that you may receive from us or cannot give guarantees on the future employment status of any Personal Assistants you may currently employ.’
As you can imagine such ‘reassurance’ only serves to heighten anxieties and build mistrust!
So I return to my central question – will the government guarantee that Ashley Jon and all those currently in receipt of ILF will not lose their independence as a result of their decision to close it. A decision I believe is aimed at saving money but might end up costing more in other budget areas such as health. A better way forward would be for government to engage with ILF recipients learn from their experience and find ways of shaping future services that are cost effective but continue to deliver true independence.
As Disabled People Against Cuts points out for the 17,500 people in receipt of ILF ‘the closure of the Fund will have a devastating impact on the lives on these individuals and their families. It also has a much wider significance because at the heart of this is the fundamental question of disabled people’s place in society: do we want a society that keeps its disabled citizens out of sight, prisoners in their own homes or locked away in institutions, surviving not living or do we want a society that enables disabled people to participate, contribute and enjoy the opportunities, choice and control that non-disabled people take for granted?’
Or in Mahatma Ghandi’s words “A nation’s greatness is measured by how it treats its weakest members.”
People like Jon and Ashley are not weak but strong. The ILF gives them independence and liberates their strengths. Now is the opportunity for the Minister to guarantee their future independence will not be compromised by the closure of the ILF.
DPAC would like to thank Nic and all the supportive MPs at the adjournment debate on ILF on 18th June 2014
See the ILF debate at: http://www.bbc.co.uk/democracylive/house-of-commons-27884690
We read with interest the piece in the Independent by Rachel Reeves and Kate Green regarding Labour’s response to the Work Capability Assessment 
Labour should realise that disabled people are deeply distrustful of any Labour reform of a Work Capability Assessment system, which Labour introduced in the Welfare Act of 2007 with the stated aim of removing 1 million claimants from the benefit system .
Our position has been and will be that the Work Capability Assessment is deeply flawed in its basic concept, not just in terms of the details of its delivery, and inclusion in the workplace for disabled people cannot simply be achieved by a ‘back to work’ test.
In the Reclaiming Our Futures, Disabled People’s Manifesto , we state that a priority demand from government is that:
A comprehensive and strategic plan of action is developed with disabled people and our organisations to tackle the discrimination and exclusion disabled people face in work and employment including: increasing quality and range of personalised support available to disabled people, strengthening disabled employees rights and tackling employer discrimination and poor practice
Other key demands include that:
Economic productivity must not be the only measure of people’s worth and value, volunteering offers as much value to society as paid employment. While we recognise that volunteering can offer additional skills, it should not be the default option for disabled people because of our exclusion from paid work
There must be policy and media recognition that there will always be disabled people who are unable or too ill to work. These individuals must be supported by a publically funded system. They should not be penalised or demonised as they are currently.
For true inclusion in the workplace for disabled people a wider approach is necessary including but not limited to:
• Will Labour commit to the restoration of Disabled Student’s Allowance,
• Will Labour commit to the restoration of the Independent Living Fund,
• Will Labour commit to the extension of Access to Work (AtW) to include unpaid voluntary positions,
• Will Labour commit to the reversal of the reduction of people who currently receive DLA, but will not receive PIP and also lose their Motability access,
• Will Labour commit to the reinstatement of the requirement for councils to produce equality schemes on employment and access
• Will Labour commit to the provision of accessible transport.
• Will Labour commit to the reinstatement of “day one” protection from unfair dismissal in employment law
• Will Labour commit to the provision of Employment Tribunals enforcing mandatory organisation-wide measures on preventing disability discrimination
• Will Labour commit to the provision that all government contracts, at a national, regional and local level, are only awarded to companies that are fulfilling measurable equality targets for the employment of disabled people
(for further points see reference 2)
These currently are some of the barriers to inclusion in the workplace for disabled people, and they will not be fixed by simply amending the WCA. The issue must be seen within the context of the wider interconnected system of barriers in place. It must be seen in terms of what a large majority of disabled people have already identified as key problems.
In terms of inclusion we also need from Labour, a recognition that for many disabled people to be able to work there has to be a nationally transportable social care system with a guarantee that people would keep the same levels of funding wherever they needed to move to work.
We need recognition that there is an onus on government and employers to fully accept the spirit of the Equality Act 2010  with its requirement to the opening of work opportunity to disabled people. Without this, no “fit for work test” aimed at cutting disability benefits will make any impact whatsoever on the numbers of disabled people who can attain and sustain employment.
We also need from Labour a stronger recognition that there are many disabled people who cannot enter the work place and should not have to live in fear of being pressured into doing so.
There is much that the article leaves out and that leaves us with a number of serious concerns and questions.
While we are not yet prepared to endorse in any way Labour’s new approach to the Work Capability Assessment, we do see the article by Rachel Reeves and Kate Green as a helpful starting point for discussions on the future of inclusion of disabled people, who want and are able to work, in the workplace and we would welcome an opportunity to meet with them and discuss this further. We would like meet with Kate Green and Rachel Reeves to ask the following questions:
1. Will Labour commit to stop spending public money on private
contractors and return any assessments of disabled people back to GPs
with medical evidence taken into account as well as give a commitment to
look at the barriers to work for disabled people who can and want to
work (in line with the social model of disability)?
2. Will Labour commit to a time and date to talk with DPAC, My Legal,
the Mental Health Resistance Network, Black Triangle, Deaf activists,
those with learning difficulties ( with an outreach of ½ a million
disabled people) to listen to the views of the largest network of grass
roots disabled people on the WCA and ESA?
3. If Labour are committed to scrapping the WCA when will Deaf and
disabled people, and those with mental health issues have sight of the
detail of any alternative Labour is proposing?
4. If Labour accepts the harm, devastation and premature deaths that have
been an outcome of the WCA why have they chosen to suspend their
prospective parliamentary candidate for St Austell and Newquay, Deborah
Hopkins for speaking out in public about the harm caused by the WCA.
5. Will Labour address the disproportionate harm that the WCA and
sanctions on ESA and JSA are causing to all disabled people, in
particular those with mental health issues and learning difficulties?
6. We along with many others insisted that a centralised Independent Living Fund
for Scotland be established and it has been done. They have also promised to re-open ILF to new users, with a commitment of additional funds and recognition of its importance to independent living and obligations to article 19 of the UN Convention on the Rights of Persons with Disabilities. Why has the Labour
Party not promised to re-establish it south of the border?
Many of the Statements included in this response are taken from the UK Disabled Peoples’ Reclaiming our Futures Manifesto and are endorsed by a UK network of disabled people and Deaf and Disabled Peoples Organisations, including: ALLFIE, Inclusion London, Equal Lives, DPAC, Inclusion Scotland, Disability Wales and the TUC Disabled Workers Committee , who between them reach several million disabled voters.
1. How Labour would reform the Work Capability Assessment http://www.independent.co.uk/voices/comment/how-labour-would-reform-the-work-capability-assessment-9265479.html
2. The Reclaiming Our Futures, Disabled People’s Manifesto http://disability-studies.leeds.ac.uk/files/library/UK-Disabled-People-s-Manifesto-Reclaiming-Our-Futures.pdf
3. The Green Paper: The new deal for welfare: Empowering people to work. 2006 http://webarchive.nationalarchives.gov.uk/+/http://dwp.gov.uk/docs/a-new-deal-for-welfare-empowering-people-to-work-full-document.pdf
4. Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents
We are very much looking forward to seeing everyone who can come to our national conference on Saturday but it is also important that those of you who can’t get there in person are able to take part. There are a number of ways you can do this:
Or email: email@example.com
The program for the day is at DPAC Conference 2014 Saturday 12th April – Conference Programme
Defend Independent Living Rights
Stop the Closure of the Independent Living Fund
Stop Disability Cuts
The European Network on Independent Living is calling on disabled people’s organisations across Europe to mobilise together on or near Monday 5 May 2014 through events, lobbying and protests to oppose the deep and ongoing cuts affecting disability services and benefits.
As disabled Independent Living Fund users, close family members and allies campaigning to defend independent living rights and stop the Fund’s closure, we urge disabled people’s organisations and the broader disability movement in England, Wales, Scotland and Northern Ireland to actively support this important day.
Even small events and public activities will help to raise awareness and act as a focal point for those who want to work together to oppose cuts to services and benefits, including the proposed closure of the Independent Living Fund in fifteen months.
It is vital that we also use this opportunity to reflect and learn from the mistakes associated with the public service reforms of a decade ago and the policies of ‘welfare reform’ and ‘personalisation’, including the use of ‘tick-box’ processes such as the Work Capability Assessment and the Resource Allocation Systems in social care to replace the individual and detailed assessment of need.
The fear of a ‘demographic time-bomb’ associated with growing numbers of older disabled people in their eighties and nineties, creating an age imbalance in a static or falling population, has been used to justify the raising of the pension age and the way pensions are calculated, the erosion and privatisation of the ‘welfare state’, cuts to health and social care, changes to the benefits systems, and latterly ‘austerity’.
But a growing population associated with increasing birth rates and the immigration of young adults, improved productivity and the greater fitness and activity levels of older people means the ‘demographic time-bomb’ in Britain may be a myth.
The political climate that has undermined independent living and disability rights, and is using positive ideas such as ‘direct payments’ and ‘individualised funding’ as vehicles for shifting financial responsibility for meeting social care needs from the state to the individual needs to be challenged.
We should no longer ignore the needs of the tens of thousands of children who are compelled by their family circumstances to be ‘young carers’ or the four hundred thousand disabled people confined to residential care or the way new concepts such as ‘prevention’, ‘reablement’ and ‘recovery’ are used to deny hundreds of thousands of disabled people the services they need.
Those who argue disabled people have been ‘liberated’ and the welfare state is ‘broken’ are wrong, and only do so in pursuit of a very negative agenda associated with privatisation and greater inequality between the ‘haves’ and ‘have nots’. The same people have been passive while the Independent Living Fund has been dismissed as ‘anachronistic’ and ‘paternalistic’, and the experience and wishes of the Fund’s users and their families ignored.
The disabled people’s movement across England, Wales, Scotland and Northern Ireland has a proud history of campaigning for independent living rights, but the gains of a generation ago for disabled people of working age are now under threat, as are the social opportunities pursued by many disabled people with complex conditions.
The innovations of the ‘independent living movement’ such as the ‘personal assistance’ approach, specialised information and training, and the self-assessment of personal needs have been marginalised. While our organisations and projects have struggled financially since the millennium, tens of millions of pounds have flowed towards those who supported the development of ‘personalisation’ and its ‘evidence base’.
But what is perhaps worst of all is many of those severely disabled people who have assumed the demanding responsibility of organising and managing their own complex personal assistance support, and do so fifty-two weeks a year without any financial rewards, are defined as being ‘economically inactive’.
A jigsaw of social equality has been slowly constructed since the end of slavery and the emergence of the Chartists through the right to vote, women’s suffrage, universal healthcare, the legalisation of same-sex relationships, reproductive rights for women, equal pay legislation, and the outlawing of racism and homophobia.
Limited advances in tackling disability and age discrimination are now being reversed, with the statutory right to an individual assessment of need by local councils being replaced. Local authorities are to be given the power to restrict a disabled person’s rights or freedom of action in pursuit of a legal duty to prevent or reduce a person’s need for social care services or personal assistance.
Social equality for all will never be achieved unless the needs of disabled children and adults are acknowledged, assessed and met as of right, and those children and young people compelled into a caring role within their family because of a lack of social services support are freed from this and allowed to develop socially in the same way as their peers. But this would require an unparalleled redistribution of wealth, and the redrawing of our society’s social priorities.
We believe disabled people of all ages should: have the right to live in the community free of the threat of segregation; be supported to stay healthy, safe and free of distress; and be freed from the harsh means-tests that are a feature of social care. Young disabled people in particular should be supported to pursue their dreams and aspirations free of the social barriers and discrimination that impeded many in the past. And because of the vital social role played by full-time family carers, they should be paid a social wage of at least fifty percent of the average wage of a skilled worker.
Our movement has a collective responsibility to defend the gains we have made, and renew its commitment to campaign for full civil and human rights for all disabled people and their families.
The ‘European Independent Living Day’ is an opportunity we should not waste.
Abi Vanes, sister of ILF user
Aine Young, family of ILF user
Andy Greene, Islington Disabled People Against Cuts
Angela Mountstephens, sister and carer of an ILF user
Ann Walawalkar, parent of an ILF user
Anne Novis MBE
Anne Pridmore, ILF user and Director of ‘Being the Boss’
Anne Rae, Chair of Greater Manchester Coalition of Disabled People
Ann Rainey, ILF user
Anne Whitehurst, ILF user
Ashleigh Myatt, personal assistant
Bill Riddall, Centre for Independent Living Northern Ireland
Brian Glaves, family carer and husband of ILF user
Brian Hilton, ILF user
Bob Ellard, member of Disabled People Against Cuts
Brenda Bayliss, mother of an ILF user
Caroline Martin, mother of an ILF user
Cath Gibson, ILF user
Charles Rainey, brother and carer of an ILF user
Christine Pickthall, ILF user
Christine Squires, ILF user
Christine Stringer, parent of an ILF user
Clare Palmer, mother of an ILF user
Colin Griffiths, ILF user
Colm Murphy, family of an ILF user
David Vanes, brother-in-law of ILF user
Debbie Domb, ILF user
Debbie Jolly, co-founder of Disabled People Against Cuts and Board member of the European Network on Independent Living
Dessie Allen, brother of ILF user
Dolores Hannigan, ILF user
Ellen Clifford, Disabled People Against Cuts
Emma Dakin, ILF user
Fred Bayliss, father of ILF user
Gabriel Pepper, ILF user
Helen Brown, personal assistant
Ian Atkinson, Gateshead Access Panel
Ian Kenny, ILF user
Jacqui Armston, personal assistant
James Corker, carer of ILF user
Jan Turner, Project Manager of ‘Being the Boss’
Jean Allen, mother of ILF user
Jean Glaves, ILF user
Jenny Hurst, ILF user
John Aspinall, ILF user
John Buckley, parent of an ILF user
John Gilliland, father of ILF user
John Kelly, ILF user
Juliet Marlow, ILF user since 1991
Kieran Coffey, ILF user
Kieran McCarthy M.L.A. Strangford (Northern Ireland)
Kieran Walawalkar, ILF user
Laura McCrum, ILF user
Lianne Bayliss, ILF user
Linda Burnip, parent of an ILF user and co-founder of Disabled People Against Cuts
Lise Marron, ILF user
Mandy Dexter, personal assistant
Margaret Coffey, mother and carer of ILF user
Maria Nash, ILF user
Marie Thompson, sister of ILF user
Mark Williams, ILF user
Michael Bayliss, brother of ILF user
Michelle Allen, personal assistant
Mick Hutchins, ILF user
Neil Bayliss, brother of ILF user
Niqi Rainey, sister-in-law and carer of an ILF user
Paul Taylforth, step-father and carer of ILF user
Paula Peters, Disabled People Against Cuts
Peter Coffey, father and carer of ILF user
Philomena McCrory, Centre for Independent Living Northern Ireland
Rahel Geffen – CEO Disability Action in Islington
Richard Parker, ILF user since 1991
Rob Punton, ILF user, Community Navigator Services and Disabled People Against Cuts
Robert Allen, ILF user
Ronnie Allen, brother of ILF user
Rosemary Kelly, ILF user
Rosemary O’Neill, CarerWatch
Roxanne Homayoun, ILF user
Sean O’Hare, ILF user
Sophie Partridge, ILF user
Stuart Bracking, ILF user
Sue Lovett, English Campaign for a Fair Society
Surojit Walawalkar, parent of an ILF user
Theresa Murphy, family of an ILF user
Tracey Lazard, Chief Executive of Inclusion London
Ursula Corker MBE, carer of ILF user
Valerie McCarthy, sister and carer of an ILF user
Vin West, parent and carer
Wendy Mortimer, personal assistant
We’ve had a great response to bookings for the DPAC conference on Sat 12th April in London, but places are now running out. Please email: firstname.lastname@example.org
with your details, number of places needed and any access needs.
12th April 2014 – 11am until 5pm
London Met University, Tower Building, 166 – 220 Holloway Road, London, N7 8DP
Since we started in October 2010 Disabled People Against Cuts has been at the forefront of the fight against austerity. With Atos on the run, and the bedroom tax on the ropes we are seeing the results of hard campaigning. But there is much more to do to ensure disabled people’s rights to live independently and with an adequate income.
The national conference is a chance for DPAC members to come together, to share experiences and discuss your ideas for moving forwards.
DPAC are working hard to bring to conference a surprise guest, a person who, if anyone has, has been the catalyst for the re-emergence of disability activism in the last few years, someone DPAC has enjoyed a close relationship with from visiting him at home to donating underpants to supporting his select committee appearances.
Workshops will look at: – Where Now for the Independent Living Fund campaign, – Developing a Social Model of Distress, – Winning the Argument, – Disability, Art and Protest, – Building a National Network of Disabled People’s Organisations and Direct Action practical skills among others.
Please note places are limited so priority will be given to DPAC members. For information about joining please contact email@example.com
The venue is wheelchair accessible. BSL and a note taker will be provided. For access information go to: http://www.disabledgo.com/access-guide/islington-council/london-metropolitan-university-tower-building
For access queries including booking parking please contact DPACfightback@yahoo.co.uk
To book places or for more information please contact DPACfightback@yahoo.co.uk
The Government has announced that the Independent Living Fund will close on 30th June 2015 despite losing a Court of Appeal battle over this plan.
The Department for Work and Pensions originally planned to abolish the fund on 31 March 2015, but was forced to review the move after the Court of Appeal ruled that it had failed to comply with its legal duty to promote equality when making the decision.
The fund provides cash payments to top-up local authority social care support to around 18,500 severely disabled people so they can live more independently.
This fund is ESSENTIAL to disabled people up and down the country -a lifeline for many and must be re-opened to new applicants.
The fund closing after the next general election gives us a window of opportunity.
This petition is to Nick Clegg and David Cameron and it is calling on them to not close the Independent Living Fund. *As the PM does not have a public email address, this petition will send email to offices of IDS*
The fact that this fund will not end until after the next general election puts the onus on the Labour Party to either continue the fund or create an alternative fund that will be in place post-30th June 2015.
This petition calls for the Labour party to put forward their proposals for a replacement fund at the earliest possible time and have this proposal in their 2015 manifesto. We need to make them understand how important this support is to sections of the disabled community.
Sign -up, share and fill up IDS’ and other MPs inboxes so they cant ignore us at
The Tory Government’s callous decision to continue with the closure of the Independent Living Fund, announced today by Mike Penning represents a further ideologically driven attack on the quality of life of all but the richest UK citizens.
For those people who rely on the fund for their care and support, the prospect of the devolution of such care to Local Authority adult care provision is harrowing indeed.
One ILF recipient, Mary Laver, made a video about what her life would be like without the ILF. You can see it here: http://www.youtube.com/watch?v=XLPA96k1oaE
What is most illustrative about this video, to me, is not her condition as presented in the video, nor the fact that a woman like Mary could not possibly have been an Olympic Torch Bearer without the help of the fund, but a single sentence she uttered after watching the video of herself in the Houses of Parliament last November. It spoke volumes. She said “I never realized how disabled I am until I saw that.”
Another, perhaps better known ILF recipient is actor and comedian Liz Carr who plays Clarissa Mullery in BBC’s Silent Witness. She says “The closure of the Independent Living Fund will inevitably lead to the erosion of independence, inclusion and freedom for disabled people who have high levels of need. I am one of the 18,000 people in the UK who receive support from the ILF and it is this funding to pay people to do the things I physically can’t do which enables me to get up in the morning, work and have the same kinds of opportunities as everyone else. I don’t think I’m being overdramatic when I say that today’s news is devastating to those of us whose lives and existence owes a great deal to the Independent Living Fund. How can already strapped for cash Local authorities take up the slack when the Fund closes in the summer of 2015? How many of us are going to lose our independence as residential care provides a more cost effective option? A future without the ILF is terrifying.”
Merry Cross of DPAC and Left Unity says that the decision is “the worst example of the hypocysy asnd lies that Cameron has come out with since he took office in 2010, claiming that he would be protecting ‘the poorest, the most vulnerable, the elderly, the frail’. The intention is to destroy Local Authorities as part of the privatisation agenda. I can’t think of a single reason why any disabled person would be reassured by that statement at the end of the press release that the government “‘want to make sure that disabled people are given the support that allows them to fulfil their potential’” and I can’t think of a single reason why any disabled person would feel anything other than terror and horror. I’d say the governmentt commitment to disabled people is as shallow as its commitment to the pockets of its rich friends is deep.”
That is the truth at the heart of the matter. Withdrawing this lifeline from those of us who need it is sentencing us to a life inside the sterilized walls of a local authority Care Home, or imprisonment within the no less confining walls of our own homes, granted “care” in such meager doses as to deny us the dignity of choosing our own time of rising, sleeping, eating or even the voluntary usage of such necessities as the toilet.
The Court of Appeal found the decision of the Tory Government to close the Independent Living Fund unlawful last November on the grounds that the duty of the government to promote equality had been neglected. The judges found that the DWP had failed to fulfil its duty, under section 149 of the Equality Act 2010, to have “due regard” to the need to promote equality of opportunity between disabled and non-disabled people in its decision to close the fund. It was found that briefings given to then disability minister Esther McVey by officials did not adequately make clear “the potentially very grave impact” the closure of the ILF could have on service users and that whereas responses to the consultation indicated that “independent living might well be put seriously in jeopardy for a large number of people”, this was not conveyed to the minister in clear terms.
To callously strip disabled people of their most basic freedoms cannot by any reasonable person be considered a promotion of equality.
We would thus urge persons of conscience, politicians, and organizations concerned with any and all human rights to join us in the condemnation of this policy and to support the next steps in challenging the manifest sadism of a government bent on imposing destitution and despair on the populace.
Campaigners will continue to fight the closure. DPAC’s Ellen Clifford said, “The fight continues. We are seeing the impact of the closure on 2010 and how local authority support is failing to meet the needs and rights of disabled people under the UN Convention on the Rights of Persons with Disabilities. The strength and resolve of grassroots disabled people got us this far and we are not giving up now. This has never just been about protecting support for existing ILF recipients, however important that certainly is, but it is also about the fundamental right to independent living for all disabled people.”
Article by Conan Doyle
Photo from Rockinpaddy touring with Graeae’s Threepenny Opera
As a grassroots campaign group DPAC wouldn’t exist without the dedication of all those who give their time to exposing what is happening: coming out on the streets, writing reports, researching, writing web content and policy critiques, heading up and being part of the growing number of local DPACs, organising events, engaging with social media and a whole set of other stuff that keeps DPAC vibrant, active and strong – its thanks to you that DPAC exists. DPAC also want to thank the growing number of grassroots groups, individuals, academics, supporters, unions and organisations we’ve worked with in 2013.
2013 began with DPAC being awarded campaign of the year for our work in 2012 the year ends with DPAC being named as ‘people of the year’ by Owen Jones. In 2013 DPAC supported many local based protests on transport, the bedroom tax, ILF, local authority cuts and privatisation. We blocked roads protested against fuel poverty, fracking, the loss of legal aid, the bedroom tax, the closure of ILF and more. We set up Reclaiming our Futures 7 days of action joined by hundreds to celebrate the gains of the disabled peoples’ movement and to protest at the effects of imposed austerity on disabled people. DPAC launched the UK Disabled Peoples’ Manifesto which was followed by an EDM.We also published a number of reports.
There was cause to celebrate: the Government were ruled to have made the decision to close the Independent Living Fund unlawfully. Mental Health Resistance network succeeded in winning both case and appeal by the Government on the discrimination of the WCA. DPAC were approached by the UN prior to Raquel Rolnik’s UK visit to feed-in –her findings on the bedroom tax were devastating for the Government. DPAC led a whole range of events and join events on benefit justice to join together and fight the evils that this Government have imposed. While every protest, every campaign, every new network and every exposure of this Government is a success, we received growing numbers of emails from those left without money, food, homes and suffering cuts to their support.
In 2014 we must continue to fight and take all actions we can to change and expose the devastation this Government is causing to disabled people.
You can subscribe to receive all DPAC web posts or become a DPAC member at www.dpac.net.uk join us on twitter @Dis_PPL_Protest or on Facebook
Key highlights of DPAC actions from 2013 below….
DPAC were awarded campaign of the year (2012) by Lipstick Socialists. They said: The fight back by disabled people as the Con/Dem Govt stripped some of the most ‘vulnerable’ sections of the community of their benefits. Their campaign against Atos (who made the decisions) during the Paralympics was inspiring and they have led the way in the fightback against the Con/Dem Govt. – See more at: http://www.internaldpac.org.uk/DPACClone/2013/01/#sthash.tEoKp2ds.dpuf
Victory for Daniel Roque Hall and Winvisable as Daniel is released from prison. Annie and Bob uncovered The Atos and DWP’s Land of make Believe http://www.internaldpac.org.uk/DPACClone/2013/02/atos-and-dwps-land-of-make-believe/
Owen Jones donates some of his prize from young writer of the year (donated by Lord Ashcroft) to DPAC http://www.internaldpac.org.uk/DPACClone/2013/02/thank-you-owen-but-we-wont-count-on-the-money-until-lord-ashcroft-puts-it-in-our-account/
We publicised the workfare cases The judgment on cases brought by Cait Reilly and Jamie Wilson mean that all but one of the Government’s workfare schemes (Mandatory Work Activity) that force unemployed people to work unpaid or lose benefits have been deemed unlawful. As we know IDS went off and rewrote the law- See more at: http://www.internaldpac.org.uk/DPACClone/2013/02/#sthash.jZLw1k5A.dpuf
We publicised an update on the Bedroom Tax, unfortunately not rewritten by IDS or anyone else. The post by Frank proved to be an unfortunate prediction of what was to come.
On ILF we produced a template letter for MPs and our collected FoIs on what Local authorities responses were to the ILF consultation http://www.internaldpac.org.uk/DPACClone/2013/02/what-local-authorities-said-about-the-closure-of-ilf/
Whitehall Traffic was brought to a standstill outside the Dept of Energy and Climate Change http://www.internaldpac.org.uk/DPACClone/2013/02/whitehall-road-block-brings-traffic-to-a-standstill-outside-dept-of-energy-climate-change/
Unum were finally nailed on driving Governments’ on welfare cuts http://www.internaldpac.org.uk/DPACClone/2013/02/unum-finally-nailed-through-bragging-on-driving-government-thinking/
DPAC and Inclusion London issued a statement on ILF while our National English DPOs remained silent http://www.internaldpac.org.uk/DPACClone/2013/02/defend-independent-living-save-the-independent-living-fund/
Annie Howard exposed the myths around the support group and ESA http://www.internaldpac.org.uk/DPACClone/2013/02/11-was-never-intended-to-be-the-number-of-people-in-the-support-group-dwp-big-blunder-annie-howard/
Atos and the treatment of mental health users and survivors was further exposed through You Tube, while Kate Belgrave asked where were the MFCs at Atos – we’re still looking… http://www.internaldpac.org.uk/DPACClone/2013/02/harrowing-atos-assessment-and-where-are-the-mental-health-champions/
A letter from Ed Miliband was publicised after it was sent to us by a supporter http://www.internaldpac.org.uk/DPACClone/2013/02/letter-from-ed-miliband-on-atoswca-but-is-it-enough/
DPAC joined the campaign against the privatisation at Barnet and the great Crapita takeover http://www.internaldpac.org.uk/DPACClone/2013/02/urgent-stop-captia-10-years-plus-contract-for-council-services-in-barnet/
We launched a campaign against Colin Brewer who said that disabled children should be put down – he later resigned, but tried to put himself forward in a subsequent election process. http://www.internaldpac.org.uk/DPACClone/2013/02/urgent-stop-captia-10-years-plus-contract-for-council-services-in-barnet/
We published an email from one of our supporters which asked SCOPE what it was doing to save ILF , SCOPE suggested they get in touch with DPAC http://www.internaldpac.org.uk/DPACClone/2013/02/scope-and-ilf/
We reposted the excellent Nick on ESA Process in Chaos and the Government cover-up http://www.internaldpac.org.uk/DPACClone/2013/03/dwps-esa-process-in-chaos/
As DPAC is on the working group of the European Network on Independent Living (ENIL) against European austerity and its effect on disabled people we asked you to write to your MEPs to support a push to get this debated in the European Parliament
March 13th was the court case on ILF in which 5 ILF users took the DWP to court against the proposed closure of ILF in 2015 We stepped up the campaign to publish stories of ILF users and those that would have benefited from ILF if it hadn’t been closed to new users in 2010 by Miller without even a dodgy consultation process. http://www.internaldpac.org.uk/DPACClone/independent-living-fund/
The Benefit Justice Summit co-organised by DPAC in London brought together unions, grassroots groups, lawyers and tenants groups
We publicised news for parents of disabled children in the private rented sector and how they could claim money back from the DWP http://www.internaldpac.org.uk/DPACClone/2013/03/urgent-news-for-parents-of-disabled-children-renting-in-private-sector-money-back-from-dwp/
Beth Tichbourne was fined £745 plus costs for saying that David Cameron had ‘blood on his hands’ in an outrage that we should never forget http://www.internaldpac.org.uk/DPACClone/2013/03/bethan-tichborn-cameron-has-blood-on-his-hands5503/
We publish an update on ILF court case with video http://www.internaldpac.org.uk/DPACClone/2013/03/ilf-court-case-update-and-implications/
DPAC and our sister org Black Triangle issue a joint statement on Labour and Bedroom tax http://www.internaldpac.org.uk/DPACClone/2013/03/joint-statement-and-petition-by-dpac-and-black-triangle-anti-defamation-campaign-in-defence-of-disability-rights-on-the-labour-party-campaign-against-the-bedroom-tax/
DWP and Government lies on ILF closure are exposed by DPAC in previously classified papers and memos from the DWP to ministers http://www.internaldpac.org.uk/DPACClone/2013/03/summary-of-secret-correspondence-from-the-dwp-to-mcvey-on-the-ilf-closure/
ESA appeals increase by 70% DPAC reposts Nick’s analysis http://www.internaldpac.org.uk/DPACClone/2013/03/more-chaos-esa-appeals-up-by-70/
Disability charities consistent apathy for disabled peoples’ lives, but not for their high salaries for directors was highlighted yet again http://www.internaldpac.org.uk/DPACClone/2013/03/how-the-big-disability-charities-let-down-disabled-people-again/
DPAC supported local protests and campaigns and also protests against staff cuts on railways and transport protests
April was the month that the condemns brought in more of their cuts for ordinary people the hated bedroom tax, the end of council tax support, the benefit cap and more http://www.internaldpac.org.uk/DPACClone/2013/04/the-nasty-party-go-on-the-offensive-against-disabled-people/
DPAC and UKUncut served eviction notices on our ‘favourite’ MPs –they had too many bedrooms –a complaint was put into You Tube who were told to remove the videos of IDS’ mansion http://www.internaldpac.org.uk/DPACClone/2013/04/eviction-notice-for-ids-and-oh-my-what-a-big-house-you-have/ http://www.internaldpac.org.uk/DPACClone/2013/04/ids-home-occupation-videos/
The TUC disabled workers refuse to join the Government sponsored Disability Action Alliance hosted by Disability Rights UK (DRUK) http://www.internaldpac.org.uk/DPACClone/2013/04/the-disability-action-alliance-or-whatever-happened-to-the-disability-strategy/
After news that the 5 ILF users that took the DWP to court had lost the case processes began to appeal the decision and still not a word of support from the big Disability charities or the aforementioned DRUK http://www.internaldpac.org.uk/DPACClone/2013/04/claimants-to-appeal-high-court-decision-concerning-closure-of-the-independent-living-fund/
DPAC learns of a man who was arrested and tried in a secret court and jailed due to Atos –DPAC launches a campaign http://www.internaldpac.org.uk/DPACClone/2013/04/man-arrested-and-tried-in-a-secret-court-after-atos-assessment-support-needed-in-nottingham/
We also supported and co-organised a number of Benefit Justice summits across the country, supported more protests on transport and privatisation and continued to support the Barnet crisis
We supported CSRF in protesting at the |PCS conference and their refusal to refuse to implement benefit sanctions http://www.internaldpac.org.uk/DPACClone/2013/05/civil-service-rank-and-file-protest-at-pcs-conference/
We joined with False Economy in the search for the elusive Mental Function Champions at Atos , Dr Greg Wood quits Atos and turns whistle blower http://www.internaldpac.org.uk/DPACClone/2013/05/where-are-the-mental-function-champions-at-atos-and-other-atos-type-things/
DPAC publishes info on Hardship payments and budgeting loans as we get more and more emails from people caught in the poverty and sanction traps set by the DWP –the post has been shared over 36,0000 times http://www.internaldpac.org.uk/DPACClone/2013/05/hardship-paymentsbudgeting-loans-and-short-term-advances/
Black triangle meet with Scottish Government to discuss regulations regarding Atos and GPs http://www.internaldpac.org.uk/DPACClone/2013/05/esa-regulations-25-and-31-campaign-black-triangle-to-meet-with-scottish-parliament-welfare-reform-committee-chief-this-thursday/
The Mental Health Resistance Network win against Government on WCA , but spectra of legal aid cuts is raised too http://www.internaldpac.org.uk/DPACClone/2013/05/will-legal-victory-by-mhrn-against-atos-tests-be-our-last-we-need-to-act-now/
DPAC and the TUC disabled workers block Tottenham Court Road in an act of solidarity http://www.internaldpac.org.uk/DPACClone/2013/05/dpac-and-tuc-members-in-direct-action-of-solidarity/
DPAC publishes a critique of UKIP http://www.internaldpac.org.uk/DPACClone/2013/05/why-the-rise-of-ukip-is-dangerous-for-disabled-people/
DPAC’s own Ellen Clifford talks to real fare http://www.internaldpac.org.uk/DPACClone/2013/05/ellen-clifford-talks-to-real-fare-on-welfare-reform-and-protest/
June 1st marked a day of UK wide protests against the bedroom tax attended by DPAC
DPAC publishes stats by Nick that show the huge hike in sanctions under the Coalition http://www.internaldpac.org.uk/DPACClone/2013/06/jsa-benefit-sanctions-sky-rocket-under-coalition/
DPAC holds a Birthday party protest for ILF http://www.internaldpac.org.uk/DPACClone/2013/06/press-release-independent-living-fund-birthday-protest/
The fight against the Bedroom tax continues with protests and new groups springing up and supporting each other across the country http://www.internaldpac.org.uk/DPACClone/2013/06/updates-the-fight-against-the-bedroom-tax/
DPAC publishes Lies, Damn IDS and Statistics http://www.internaldpac.org.uk/DPACClone/2013/06/lies-damn-ids-and-statistics/
DPAC releases its program for 7 days of action, campaigns and protest: Reclaiming Our Futures http://www.internaldpac.org.uk/DPACClone/2013/07/reclaiming-our-futures-7-days-of-action/
DPAC joins protest at Downing Street against the bedroom tax
DPAC joins Justice Alliance to protest against cuts to legal aid
DPAC joins vigil for case against bedroom tax outside the Royal Courts of Justice
DPAC posts a list of advice and legal resources as emails from people in severe hardship escalates further http://www.internaldpac.org.uk/DPACClone/2013/07/advice-and-legal-resources/
Sisters of Frida go to Geneva to challenge the situation for disabled women at the UN http://www.internaldpac.org.uk/DPACClone/tag/sisters-of-frida/
We list the MPs that voted against a cumulative impact assessment http://www.internaldpac.org.uk/DPACClone/2013/07/for-fellow-extremists-everywhere-how-your-mp-voted-on-the-cumulative-impact-assessment/
Southwark DPAC challenge local politicians http://www.internaldpac.org.uk/DPACClone/2013/07/sdpac-challenge-local-politicians/
Government Issues ministerial statement on Atos http://www.internaldpac.org.uk/DPACClone/2013/07/government-issues-ministerial-statement-over-atos/
Bromley/Croydon DPAC join UKUncuts Stuff the Banks http://www.internaldpac.org.uk/DPACClone/2013/07/bromleycroydon-dpac-stuff-the-banks-update/
DPAC takes part in the anti-fracking protests at Balcombe where Caroline Lucas is arrested
Updates for Reclaiming Our Futures 7 days of Action http://www.internaldpac.org.uk/DPACClone/2013/08/reclaiming-our-futures-29th-aug-4th-sept-updates/
UK Disabled peoples’ Manifesto launched http://www.inclusionlondon.co.uk/UK%20Disabled%20peoples%20Reclaiming%20Our%20Futures%20Manifesto
John McDonnell puts forward an Early Day motion on the UK Disabled Peoples’ Manifesto put together by DPAC, Inclusion London, ALLFIE and Equal Lives Norfolk
Early Day Motion 483: Disabled People’s Manifesto
That this House warmly welcomes the launch of the UK Disabled People’s Manifesto, Reclaiming our Futures, developed by disabled people and their organisations across the UK, which sets out the shared vision of disabled people for an inclusive and equal society free from economic, social and cultural barriers; and urges all political parties represented in this House to engage in a constructive dialogue with the disabled people’s organisations promoting the manifesto with the aim of achieving its objectives. – See more at: http://www.internaldpac.org.uk/DPACClone/2013/09/early-day-motion-483-disabled-peoples-manifesto/#sthash.VWGXvrlo.dpuf
DPAC are asked by UN to assist Raquel Rolnik UN Special Rapporteur on Housing prior to her visit to the UK . The visit and her findings that the bedroom tax is regressive and unfair cause Tory ministers to say she should sort her own country out, she is a Marxist and produce other ridiculous statements in the right wing media http://www.internaldpac.org.uk/DPACClone/2013/09/un-investigator-recommends-for-bedroom-tax-to-be-scrapped-immediately/
DPAC block the front entrance of BBC for non reporting of the true situation in the UK under welfare cuts as part of the Reclaiming Our Futures 7 days of action http://www.katebelgrave.com/2013/09/disabled-people-against-cuts-block-front-entrance-of-bbc-portland-place/
DPAC host art exhibition and night of entertainment, plus a day debate on the continued relevance of the Social Model with Anne Rae, Colin Barnes and Debbie Jolly
The Brilliant Kate Belgrave writes on protests and Government Extremism, protests are held outside the DWP, the Department for Education, the Department of Energy, and the Department of Health before moving on to Parliament to host the launch of the UK Disabled People Manifesto: ‘reclaiming our Futures on the UK Freedom Drive day part of the Reclaiming Our Futures week of action
DPAC posts UK Freedom Drive film by Reel News http://www.internaldpac.org.uk/DPACClone/2013/09/uk-freedom-drive-the-film/
DPAC works with Just Fair on Independent Living Issues ahead of a planned visit by the UN special rapporteur on disability http://www.internaldpac.org.uk/DPACClone/2013/09/dpac-works-with-just-fair-on-independent-living-issues/
We publish George Berger from Sweden report on Atos, KPMG and the NHS http://www.internaldpac.org.uk/DPACClone/2013/09/atos-kpmg-and-the-nhs-be-afraid-be-very-afraid/
DPAC launches a new report on the WCA http://www.internaldpac.org.uk/DPACClone/2013/09/dpac-report-work-capability-assessment/
Two of the DPAC co-founders go to Strasbourg to join the European Network on Independent Living for the 6th ENIL Freedom Drive to march to the European Parliament and tackle MEPs. Debbie Jolly is elected to serve another term on the ENIL Board and presents on behalf of DPAC on protest and what is happening in the UK under imposed austerity http://www.enil.eu/campaigns/freedom-drive/
DPAC co-organises with Wow Petition for 10,000 Cuts Memorial for those that have died through Atos and in solidarity with all suffering under Cameron’s regime of imposed austerity http://www.internaldpac.org.uk/DPACClone/2013/09/10k-cuts-and-counting-video/ see also http://www.internaldpac.org.uk/DPACClone/2013/09/10000-cuts-and-counting-linda-burnip/
Dr Alison Wilde discusses the Paralympic Legacy http://www.internaldpac.org.uk/DPACClone/2013/09/paralympic-legacy-but-which-one/
DPAC supports the Ontario Coalition against Poverty who Government want to follow the lead of the UK in denying people their entitlements http://www.internaldpac.org.uk/DPACClone/2013/09/call-out-to-support-ontario-coalition-against-poverty/
IDS found misleading again http://www.internaldpac.org.uk/DPACClone/2013/10/ids-found-misleading-again/
DPAC and Black Triangle consider legal action against GPs who refuse to provide evidence for disabled people and those with long term health issues http://www.internaldpac.org.uk/DPACClone/2013/10/legal-action-has-your-gp-refused-to-provide-further-medial-evidence-for-your-dwp-appeal/
Anita Bellows write another stunning piece exposing the bedroom tax http://www.internaldpac.org.uk/DPACClone/2013/10/bedroom-tax-the-policy-which-could-only-succeed-if-it-failed-anita-bellows/
DPAC organises vigil for Mental Health Resistance WCA case appeal by DWP http://www.internaldpac.org.uk/DPACClone/2013/10/vigil-for-wca-case-support-mental-health-resistance-network-21st-october/
DPAC joins UKUncut to protest to save Justice
DPAC join in protests against staff cuts on London Tubes http://www.internaldpac.org.uk/DPACClone/2013/10/boriss-latest-attacks-against-accessibility-and-safety-on-london-transport/ also see http://www.internaldpac.org.uk/DPACClone/2013/10/unions-unite-with-campaigners-on-tube-and-station-cuts/
DPAC publicises Punishing Poverty a report on Sanctions by Manchester CAB http://www.internaldpac.org.uk/DPACClone/2013/10/sanctions-punishing-poverty-new-report-by-cab/
DPAC publishes info on mandatory reconsideration http://www.internaldpac.org.uk/DPACClone/2013/10/some-information-on-mandatory-reconsideration-in-force-from-october-28th-2013/
UK Disability history month kicks off http://www.internaldpac.org.uk/DPACClone/2013/10/uk-disability-history-month-launch-event/
ILF users win appeal, Government say they won’t fight decision –a success but we wait for the Government next moves http://www.internaldpac.org.uk/DPACClone/2013/11/gov-will-not-appeal-court-ruling-on-closure-of-ilf/
DPAC reposts the critique of the Henwood and Hudson report as some in the disability field still claim that ILF should close http://www.internaldpac.org.uk/DPACClone/2013/11/why-the-henwood-and-hudson-report-failed-in-justifying-the-closure-of-the-independent-living-fund/
DPAC ask members and supporters to write to Penning on ILF http://www.internaldpac.org.uk/DPACClone/2013/11/write-a-message-to-penning/
Anita Bellows asks why Litchfield as ‘independent’ assessor of the WCA when he was involved in its design http://www.internaldpac.org.uk/DPACClone/2013/11/dwp-tactics-ask-litchfield-designer-of-the-wca-to-review-it-anita-bellows/
DPAC publishes info on fuel poverty as we receive more emails from people without heating or electricity due to sanctions and welfare cuts http://www.internaldpac.org.uk/DPACClone/2013/11/fuel-poverty/
Independent Living rights News is published on DPAC http://www.internaldpac.org.uk/DPACClone/2013/11/independent-living-rights-news-17-november-2013/
Paddy Murphy writes on the apparent idiocy of DECC http://www.internaldpac.org.uk/DPACClone/2013/11/disabled-people-and-fuel-poverty-what-does-decc-know-anyway/
DPAC attends the bedroom tax lobby at Parliament http://www.internaldpac.org.uk/DPACClone/2013/11/report-on-the-bedroom-tax-lobby-meeting-westminster-tuesday-12th-november-2013/
DPAC , Fuel Poverty Action and the London Pensioners are joined by hundreds on the streets to protest at unacceptable fuel poverty and deaths while the energy companies continue to make huge profits http://www.internaldpac.org.uk/DPACClone/2013/11/hundreds-protest-at-big-six-energy-companies-over-fuel-poverty-deaths/
DPAC supports ALLFIE’s campaign on no return to segregated education http://www.internaldpac.org.uk/DPACClone/2013/11/no-return-to-segregrated-education-please-sign/
DPAC and Inclusion London hear heartbreaking testimonies from disabled people affected by the cuts. We send them to the special rapporteur on disability.
DPAC and Inclusion London hold an Emergency lobby at Parliament on Independent living to launch the DPAC report on Independent Living http://www.internaldpac.org.uk/DPACClone/2013/11/independent-living-and-the-cumulative-impact-of-cuts-from-the-streets-to-the-commons/
Mary Laver and ILF user film on life without ILF is posted http://www.internaldpac.org.uk/DPACClone/2013/11/an-important-request-on-ilf-from-mary-laver/
The Disability Crime Network write to the attorney General on disability hate crimes http://www.internaldpac.org.uk/DPACClone/2013/11/disability-hate-crime-network-letter-to-attorney-general/
Anne Novis writes on hate crime http://www.internaldpac.org.uk/DPACClone/2013/12/a-life-less-valid-when-is-a-hate-crime-not-a-hate-crime-by-anne-novis-mbe/
Belgium vote yes on euthanasia for minors now accepted as law http://www.internaldpac.org.uk/DPACClone/2013/12/belgium-vote-yes-on-euthanasia-for-minors/
DPAC urges members and supporters to join Boycott Workfare in online action against workfare http://www.internaldpac.org.uk/DPACClone/2013/12/take-online-action-against-the-workfare-conference/
We publicise Habinteg’s report on the effect of the bedroom tax on independent living http://www.internaldpac.org.uk/DPACClone/2013/12/what-price-independent-lives-a-new-report-on-bedroom-tax/
Government lose appeal against decision that WCA discrimates against those with mental health issues. The Mental Health Resistance Network (MHRN) who instigated the case against the WCA celebrate another victory. MHRN a grassroots group were later joined by the charities, but without MHRN the case would not have got to the courts. http://www.internaldpac.org.uk/DPACClone/2013/12/victory-against-wca/
DPAC joins Boycott Workfare in targeting companies replacing paid work with workfare http://www.internaldpac.org.uk/DPACClone/2013/12/target-the-companies-replacing-paid-work-with-workfare/
DPAC support ALLFIE’s call for action http://www.internaldpac.org.uk/DPACClone/2013/12/educate-dont-segregate-allfies-call-for-action-on-the-10th-december-1pm/
We publicise Equal Lives’ video on how the cuts effect at the local level http://www.internaldpac.org.uk/DPACClone/2013/12/our-lives-equal-lives-norfolk-and-the-cuts/
DPAC posts video by Colin Barnes on the importance of the social model by UCU http://www.internaldpac.org.uk/DPACClone/2013/12/interview-with-colin-barnes-what-are-the-origins-of-the-social-model-of-disability-and-why-is-it-so-important-to-equal-rights-campaigners/
DPAC attends open meeting with Mike Penning http://www.internaldpac.org.uk/DPACClone/2013/12/feedback-from-todays-meeting-with-mike-penning/
DPAC publicises the case of Anthony Kletzander’s treatment in Ireland at the hands of ‘professionals’ as he is denied basic rights http://www.internaldpac.org.uk/DPACClone/2013/12/update-anthony-kletzander-needs-your-help/
Owen Jones names DPAC as one of his ‘person of the year’ choices for 2013 http://www.independent.co.uk/voices/comment/who-is-your-person-of-the-year-9018337.html
Please write to your MP urgently, asking them to save the Independent Living Fund which exists to help disabled people who need the highest levels of support. You can contact your MP easily through this website: www.writetothem.com.
Below is a message and links to a video from Mary, who is directly affected by welfare cuts. At the end of this email is a template you can use when writing to your MP.
I’m writing to let you know about an emergency that is happening to disabled people in the UK right now as you read this email.
Some of Britain’s most disabled people – including me – are facing losing our right to living independent lives. The Independent Living Fund is a pot of money that helps disabled people who need the highest levels of support to do more than just exist.
But David Cameron’s government has already closed the ILF to new applicants – and now he wants to stop it for the group of 18,500 people who already receive it.
That will mean 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. Until now, despite being severely disabled by rheumatoid arthritis and unable to walk or use my hands or arms, I’ve been able to live a fulfilling life. In 2012 I was a Gamesmaker, and I carried the Olympic torch. Now, I will be imprisoned at home, and will even have to give up my beloved dogs Jack and Molly.
At 66 years old, severely disabled, and totally human and wheelchair dependent, I have found myself looking at the deep pond at the bottom of my garden, no longer wanting to live. My weight has dropped down from 9 stone to 6 stone.
But I didn’t want to just sit around feeling sorry for myself, so I asked campaigners to make a film about me. The trailer is right here. But you can also watch the whole 15 minute film by going to http://vimeo.com/79330726
You can read my full story by going to www.mirror.co.uk/news/uk-news/ros-wynne-jones-column-mary-laver-2855221
It’s not just the ILF the whole of social care provision is in crisis. Sooner or later this will affect most of you if you become disabled or when you get older.
Disabled people are also under attack from the Bedroom Tax, from the flawed Work Capability Assessment process and ATOS’ reviled tests, from the abolition of Disability Living Allowance,from cuts to council tax benefit and Benefit Caps.
We wonder what we’ve done to deserve it. We aren’t the ones who caused the banking crisis. But it seems as if we are the ones who are paying for it.
We wanted you to know what’s happening to disabled people under ‘Austerity’, because we thought if you did you’d want to campaign with us about it.
If you do, please write to your MP urgently, asking them to save the ILF. You can send them a letter at the House of Commons, or email them via www.theyworkforyou.com.
And please forward this email to everyone you know.
You could use this as a template:
The government has already been found guilty of illegally deciding to close the Independent Living Fund and now have to remake their decision. I believe that closing this fund would violate the human rights of disabled people who have the highest support needs to live independently in the community. Closure of the ILF would not only force disabled people back into residential care homes but also cause the UK to breach its obligations under the UN Convention on the Rights of Persons with Disabilities.
I urge you to watch this video, which gives a very real idea of how important this fund is, and to do everything you can to save this vital fund: http://vimeo.com/79330726
It’s been a busy few days for DPAC gathering evidence on the cumulative impact of cuts on disabled people, and on the crisis in independent living. On the 25th we heard moving and powerful testimonies of how the Government are ruining lives through their austerity regime. Disabled people are faced with a range of cuts and so called ‘reforms’ which are contravening our basic human rights. We are faced with stark choices between eating or heating while having our dignity stripped by a range of psychological attacks at the same time as having support removed.
Testimonies will be sent to the UN rapporteur on disability-thanks to everybody who came to London to tell their stories and to those that submitted their experiences through email. This event was originally arranged by Just Fair, however due to the rapporteur being unable to come to the UK due to illness DPAC and Inclusion London stepped in to run this at the last minute, so we could get these important stories out to the UN.
On the 26th the morning saw a hugely successful protest on fuel poverty organised by DPAC, Fuel Poverty Action, the Greater London Pensioners and UKUncut: ‘Bring down the Big Six – Fuel Poverty Kills!’ against the increase in fuel poverty deaths and increasing profits and prices of the big 6. Supporting groups included No Dash for Gas, Campaign Against Climate Change, Climate Revolution, Young Friends of the Earth, Frack Off London, Power for the People, Barnet Alliance for Public Services, Lewes Against the Cuts, SOAS Energy & Climate Change Society and Southwest Against Nuclear. There were also protests in Oxford, Lewes and Bristol.
In the afternoon of the 26th the Emergency meeting on the crisis in independent living took place at parliament hosted by DPAC and Inclusion London. An event originally planned by Just Fair to launch their report to the UN rapporteur which DPAC and Inclusion London stepped in to run with a new focus on the crisis in independent living. This was in response to the successful appeal outcome at the courts on the Independent Living Fund-and the continuing awareness of the crisis for ILF users, those trying to access local authority support and the Government’s apparent non-compliance with article 19 of the UN Convention on the Rights of Persons with Disabilities.
The afternoon launched DPAC’s report on the crisis in independent living and cumulative impacts of the cuts, one of many that DPAC is working on, as well as the film by Mary Laver an ILF user. The afternoon was complimented by speeches from John Evans and reflection on the past battles for independent living. We heard from the brilliant Louise Whitfield (one of the solicitors in the ILF case) and were treated to an excellent DPAC theatre performance which brought to life the reality of impacts on disabled people and the different barriers we face.
Despite extremely short notice the event was well attended by MPs and those from the Lords. Kate Green , Hywell Williams, Katy Clarke, Anne Begg, John McDonnell, Jim Shannon, Andy Slaughter, Baroness Campbell, Baroness Wilkins and a host of others including Mary Laver’s MP. Apologies were sent from Anne McGuire, Caroline Lucas, Lucy Powell, Jeremy Corbyn and Theresa Pierce
Mike Penning ‘our’ new minister for disability was invited but did not respond or send apologies!
Many thanks to all that attended, supported and worked so hard towards the afternoon-especially the many DPAC members and supporters that wrote to their MPs and publicised this. Some may ask why English national formal disability organisations with much more money and resources than us aren’t putting their energies into these types of activities all the time- we don’t have any answers or understanding on that.
We will have a more detailed report on the Emergency meeting on the Crisis in Independent Living event in Parliament with film and photos soon
Download DPAC report Crisis in Disabled People’s Independent Living
See Mary Laver’s film on ILF View the movie
new Minister for disabled people Mike Penning said on being appointed
“It’s great to be back working with Iain Duncan Smith at this crucial time delivering important welfare reforms. Disabled people aspire to the same opportunities as everyone else, and I want to continue Esther’s work to support disabled people to live fulfilling lives.
Making this a senior ministerial post shows the government’s commitment to disabled people and ensuring everyone can get on in life.”
His email addresses, to let him know how the ILF means disabled people are more likely to access the ‘same opportunities as everyone else’ are firstname.lastname@example.org‘ email@example.com. Might be good to send comments to both.
Please forward to other people who use ILF and relevant contacts so we can fill his mailboxes.
• The Condem Government claimed that the Henwood and Hudson Review of the Independent Living Fund (ILF) 2007 found it unsustainable and supports their proposals for its functions to be assumed by Local Authorities.
• Analysis of the Review reveals a number of limitations which renders it an inadequate basis on which to build government policy on the scale that closing the ILF entails.
• The value-base for the Review is founded in an understanding of a shared commitment to independent living that cannot be assumed in our current political climate.
• The Review compares an evidence-based assessment of the inadequacies of the ILF against the theorisation of cutting edge personalisation without acknowledging the barriers to realistic implementation of the latter.
• The main arguments used in the Review to point to inadequacies in the ILF could equally and in fact more strongly be applied to the idea of Local Authorities assuming its functions. These are inequity, lack of transparency, inaccessibility and self-determination. In this way the Review fails to support current government proposals for the future of the ILF.
• Rather than finding the ILF unsustainable, the Review made a number of recommendations which would have required substantial extra funding in order to be implemented.
• The gap in support provision for disabled people to live in the community with the closure of the ILF contravenes Article 19 of the UN Convention on the Rights of Persons with Disabilities and evidence from different local authority areas is already showing the impact of this.
As campaigners question the government over plans to on the Independent Living Fund, we are being told the findings of the Henwood and Hudson Review in 2007 justify the proposals. In a response to one of his constituents Michael Ellis MP referred to “the independent review carried out under Labour” as not “outdated” and as supporting the opinion of the former Minister for Disabled People Maria Miller that the Fund is unsustainable. Henwood and Hudson have themselves written that whereas the previous government failed to act on their report, “the coalition government should be congratulated for these first steps towards a principled and strategic decision about the future of the fund”. There are a number of problems with using the Review as a basis for the decision to close the Fund: the review itself was flawed which leaves its findings open to challenge, the social care context within which the Review was written is certainly now outdated and renders the conclusions of the Review irrelevant to the current state of support provision for disabled people, and finally, the Review never made the recommendations some members of government claimed it did.
Limitations of the Consultation Process
The Henwood and Hudson Review is being used to justify changes that risk pushing back the rights of disabled people decades. For measures with such a potentially large impact the consultation process on which the Review was based was not nearly vigorous enough. The authors were given 6 months to complete the report. The consultation methodology included a formal call for evidence, 6 consultation meetings at different locations around the country, and an analysis of written submissions. The meetings were attended by 120 ILF users and their families and a total of 385 written submissions were received, of which 212 were from ILF service users and their families. Although it is likely there was some overlap between the individuals who attended the meetings and those who sent in written submissions, even if we assume there was input into the consultation from a total of 332 ILF recipients and their families, this still only represents just 0.28% of the 18,761 total number of people receiving ILF when the report was written. Disabled people at the time questioned the accessibility of the process, reliant as it was on an individual’s ability to either submit written evidence or to attend in person at a meeting at a set location on a set day. A lack of more accessible engagement methods restricted the inclusion of disabled people within the consultation process.
The involvement of other stakeholders in the consultation process was also limited. ILF staff have reported they barely even knew the Henwood and Hudson Review was being carried out, let alone were included in giving their views to it and the reviewers, presumably on orders from the Department for Work and Pensions (DWP), also refused to meet with Trustees. Moreover disabled people ineligible for ILF were not interviewed, thus failing to consider a wide range of views and experiences sufficient to consider the ILF within the wider context of independent living for disabled people. Local Authorities were invited to comment on their experiences with the ILF but not on the idea of its functions being transferred to them. A number complained about social workers having to provide support to disabled people in accessing the ILF. Such views do not suggest a willingness to take over from the ILF.
The closure of the Independent Living Fund has wide implications encompassing all support provision for disabled people and our very position in society, however the rigours of the consultation process were more suited for an internal review than for something of this magnitude. Consultation questions focused on the following questions:
– Whether the ILF is the best way of providing support.
– If not, whether a different model is required.
– What – if any – changes might be needed to improve the way the ILF operates.
The inadequacies of the ILF are analysed in detail and then compared against the theoretical advantages of other cash for care systems without an evidence-base for how these other systems work in practice. At the time of the Review Individual Budget pilots were only just underway but Direct Payments had been around for many years and yet the Report fails to provide any analysis of the success or otherwise of Direct Payments implementation by Local Authorities. Such an analysis would have warned against an increase in the role of Local Authorities in provision of social care support for disabled people.
Henwood and Hudson are open that their Review was founded in a value base which promotes self-determination for disabled people. Few people would argue against the principles of choice and control. However the balance of evidence and value base is not equally distributed through the Report: criticisms of the ILF are made on an evidence-basis yet the advantages of other cash for care systems are given from a theoretical value base alone. The Review therefore provides insufficient grounds on which to base a recommendation for integration with those other systems.
The Review is based on the assumption of a commitment to independent living for disabled people which reflects the optimism of the time when the report was written but which under this current political climate is now outdated. Despite feedback from ILF users and their families about the many positive aspects of the ILF these are insufficiently highlighted within the body of the Report, the Review being focused on improvements to the ILF rather than on defending the need for independent living support itself. Evidence collected from ILF recipients included in Appendix 2 of the report gives testimony to the significant impact that the ILF has had on the lives of individual disabled people and supports the continuing need for the ILF despite developments in other areas of social care. One person is quoted as saying “Before ILF I was treated like a child; now I am treated like an adult”.
The recommendations of the review are focused on driving forward change as part of the personalisation agenda. Although the importance of the ILF can be gauged through what is recorded in the Report of the views of ILF recipients themselves, the actual findings of the report fail to give sufficient recognition to the successes of the ILF. For example, criticisms are made of a lack of flexibility and recommendations made for lighter touch monitoring but by comparison to many local authorities, ILF has been way ahead in these respects. Another serious omission is the importance of the ILF in leveraging support from Adult Social Care. The ILF has attempted to drive up standards from local authorities by expecting minimum input in cash terms and setting standards (for example by insisting on one to one support in supported living) before becoming involved in funding a package of support. Perspectives such as this would be unlikely to come from Local Authorities or be known to individual ILF recipients and absence from the Review can be attributed to a failure to consult with ILF staff.
Taken on their own, the findings of the review present a picture of an anachronistic and irrelevant institution, a picture which is at odds with the needs and experiences of disabled people themselves when put in the wider context of independent living support.
To date there has been no consultation on alternatives to the ILF, an issue perceived by campaigners as a classic example of siloed government policy and evidence of the Minister for Disabled People being first and foremost a DWP Minister rather than cross-government The Henwood and Hudson consultation asked whether a different model was required but did not consult in detail on proposed alternatives and stakeholders including disabled people and their families, as well as Local Authorities who are being proposed to take over administration of the ILF monies are still waiting for this opportunity. Consultation on alternatives may have been beyond the remit of the reviewers but not beyond the remit of the DWP. Former minister for Disabled People, Maria Miller said that there would be a full UK wide public consultation to take place alongside publication of the government white paper on the future of the care and support system in England. Disabled people were concerned that with such a large brief as the reform of the whole care and support system, that the ILF will only be considered as a side issue within the wider consultation and will miss out on the level of attention the question of its future deserves. Meanwhile ILF Trustees took the opportunity of commenting on the Green Paper ‘Caring for our Future’ to express their conviction that a national body is needed to take over from the ILF and that integration through Local Authority budgets would be unwise.
Based on an outdated vision of social care
The Review was carried out at a time of progress within the development of personal budgets and the authors’ analysis is based upon an assumption of continued development that has proved incorrect. In their conclusions Henwood and Hudson cite the necessity of “second guessing emergent policy change”. Unfortunately they second-guessed wrong. Our present government uses austerity as an excuse but analysis of current disability policy and its beginnings within the neo-liberal approaches of New Labour reveal an ideological basis for removing rather than improving support for disabled people. Developments in personalised support for disabled people have not only stalled, they are purposefully being taken backwards. The Report mentions more modern ‘cash for care’ systems such as In Control and individual budget pilots. In 2006 there was an optimism that such systems represented the future for social care. However in 2012 we see areas of the country still without a Resource Allocation System or equivalent and no plans to ever have one, we see local authorities introducing caps to personal budgets with residential care being promoted as an option for anyone with higher support needs and we see ever tightening eligibility criteria coupled with increased care charges. The authors of the Report openly acknowledged that their analysis was “explicitly value-based as well as evidence-based” but unfortunately by assuming a context of shared values, it is not able to offer the defence of those values that we need at this present time.
If we look at the reasons given by Henwood and Hudson as evidence of the need to reform the ILF, those same reasons taken within the present climate would in fact argue against closure of the Fund to be replaced with integration into Local Authority social care systems. They cite inequity, transparency, accessibility, self-determination and flexibility as areas necessitating change. Maria Miller asserted that Local Authority social care systems would present an alternative:
“The outcomes that [the ILF] supported can now be delivered within the Local Authority managed care and support system through personal budgets and direct payments.”
Evidence from the practical application of personal budgets and direct payments systems and disabled people’s experience of these provide a strong basis for arguing that not only will Miller’s proposed alternative fail to address the areas identified by the Review as needing improvement but it will make them worse.
The Review points to a lack of access to ILF for certain groups of disabled people as evidence of inequity. The authors write “We conclude that the ILF is characterised by an unacceptably high level of inequity that must be addressed as a matter of the utmost urgency.” Examples of inequity cited are the restriction of the Fund to a range of disabled people including anyone applying aged 66 or over, people with terminal illness with less than six months to live, disabled parents, disabled people from Black and Ethnic Minority Communities and those with the highest support needs (by imposing a weekly limit on how much support can be funded). The Review criticises the need for ILF applicants to be in receipt of Higher Rate Disability Living Allowance pointing to how this is discriminatory against certain groups of disabled people including those with mental health support needs, people with learning disabilities, people with Asperger’s Syndrome and people who are blind or partially sighted. Henwood and Hudson recommend “that the DWP should… explore the simplification of ILF eligibility in order to remove the multiple layers of qualification that are required.” Instead, following the Review and shortly before the Fund was shut to new applicants it was further restricted introducing new eligibility criteria for applicants to be in employment for 16 or more hours per week and raising the Local Authority contribution to £340 per week, sparking anger and outrage and calls for the ILF “to be scrapped”.
The imposition of multiple layers of eligibility reflects the success rather than a failing of the ILF. The failing is the government’s unwillingness to invest in independent living support the amount needed to provide equal life chances for all disabled people, despite the economic case for independent living having been well established. By 1992, over 22,000 people were receiving an ILF grant and the original £5million budget had reached £97 million. Morris writes that “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.”, a situation similar to the monetary driver we are currently seeing behind the reform of Disability Living Allowance. A recurrent theme described by Henwood and Hudson is a perception of the ILF as ‘secret money’ as a result of a deliberate lack of promotion and the difficulty in finding out about it. Access to Work, the government programme providing support for disabled people in mainstream employment is often similarly described as a well-kept secret, but by contrast no one calls for the closure of Access to Work. Instead disabled people call for greater investment in the programme. The Review itself strongly recommends extension of the ILF. Henwood and Hudson write, “we received an overwhelming view that the continued exclusion of older people from ILF support is unduly inequitable”. They also recommend the removal of the ceiling cap on weekly entitlements and to allow applications from those on Middle Rate Disability Living Allowance. Rather than pointing to the financial unsustainability of the ILF as government members are claiming, the Henwood and Hudson Review calls for greater investment as part of “a broadening and deepening of the ILF role.”
A lack of transparency is criticised within the Review which found considerable shortcomings in the ILFs approach to user involvement and a lack of transparency and accountability in its decision making. Henwood and Hudson write:
“It became apparent in the course of the review that people’s experience of the ILF is often far from transparent: they do not know how their money has been calculated or how it should be; they have little knowledge of how the ILF operates as an organisation and who makes the decisions; and they are uncertain about whether and how they can challenge those decisions.”
In response to the Review, the ILF improved its user involvement structures with the introduction of a user led advisory group, and produced a new suite of information about all ILF workings and rules that has been well received for its clarity and accessibility. The review also forced the DWP to ease off its heavily constricting approach to the ILF in terms of allowing it to have any kind of communications or engagement function as a discrete organisation, which pre-review had made it almost impossible to be accountable to disabled people. Ironically many of the recommendations in the review had been made to DWP by ILF trustees for years and were ignored. Such improvements did not go as far as critics of the ILF wanted, calling for the Fund to be “scrapped and replaced by a new organisation led by service users and social workers alike”. It is nevertheless more user led and transparent than most Local Authority run social care where personal budgets and support plans are frequently agreed under the discretion of a non-user led panel and rarely involve disabled people in the decision-making process. With regards to user involvement and transparency closure of the ILF and integration with personal budgets again fails to address but would instead compound the shortcomings identified by Henwood and Hudson.
The Review criticises the ILF for being of restricted access to disabled people and subject to a postcode lottery of eligibility. This is attributed to the requirement introduced in 1993 that applicants must be in receipt of a designated level of social care support. Henwood and Hudson write, “The requirement for ILF recipients to be in receipt of at least £200 worth of local authority social services support (or the cash equivalent) is a further dimension of the eligibility criteria which can significantly restrict access” and they cite the difficulties of qualifying for social care support under Fair Access to Care Services policies. The difficulties and variability of access to independent living support through Local Authorities is well documented. Barnes writes:
“Access to direct payments and user led support is nothing less than a post code lottery and contradicts directly all recent government rhetoric espousing the need for independent living and equal opportunities for disabled people.“
Elsewhere he attributes local variation to a range of factors including the on-going commitment of local politicians and councillors to traditional professionally led services, limited budgets, labour union concerns, lack of support by care managers and some professionals, inconsistencies in assessment procedures and a chronic shortage of well-resourced local PA user support groups in many areas. Given the problem of “local variability” Henwood and Hudson recommend that “the Government prepares the ground for the eventuality of a national RAS [Resource Allocation System]” and the Review stresses the importance of a central lead in calculating eligibility. This finding not only fails to support but presents a stark contrast to the emphasis of current government policy on local accountability and to the suggestion that Local Authority social care systems are sufficiently advanced to take on the additional functions of the ILF.
Whilst the government were pushing ahead with integration of the ILF, its plans were within the context of localism and signified a move away from rather than towards centralisation of social care eligibility. Maria Miller said it is “our assessment” that such a large amount of public money can no longer be administered outside of statutory systems “in line with local priorities and accountable to local communities”. The Condem government’s determined pursuit of a localism agenda presents a significant threat to the rights of disabled people to be an equal part of the community; without central intervention to uphold social justice local elites will not choose to invest resources in a group of people who fail to fit within traditional social values. The Dilnot Commission’s proposal for a national eligibility will not guarantee national equity. As Henwood herself says “Even if a national eligibility threshold is to be established, it would still be a matter for local authorities to make decisions about how they respond to people with a given level of need”. On the other hand the ILF provided a much valued and “unusual” example of national portability which could usefully inform future developments in social care with its ability to work effectively and consistently while combining national consistency whilst working in partnership with differing Local Authority policies. Within the current context of localism it is something very different to advocate for the closure of the Independent Living Fund than it was in 2007 and it is important that the legacy of the ILF is captured if disabled people’s experience of not to be lost
Review findings in relation to accessibility do not support an argument that the ILF would be better administered through Local Authorities. Consultation feedback cited in the Report shows ILF review procedures to be preferred by and in advance of Local Authority systems:
“Many people reported favourable experiences of their contact with ILF Assessors (ILFAs). In our summary of messages from the consultation exercises we noted that: “ILF assessors were seen as knowledgeable, friendly and helpful people who approached the assessment as a two-way discussion and who went out of their way to be helpful and to try to ensure that all needs were taken into account.” We noted also in the same report that many people contrasted this with their experience of assessment from social services, with the latter often seen as simply trying to limit what support or funding people would be given.”
“The actual review process followed by the ILF was generally commented upon favourably, and this reflects the positive experiences which many ILF users report of the ILF Assessors (ILFAs) who generally approach assessment and review in a friendly and accessible manner (“personable, approachable and very professional”). This conversational approach was often compared with a more ‘tick box’ experience of local authority social services. As an ILF user remarked at one of the consultation meetings, ILFAs are ‘people-people, not paper-people’. Continuity of ILFAs from one review to another was seen as particularly helpful.”
The superiority of services provided by the ILF prompted Henwood and Hudson to even raise the “issue of the desirability of the ILF taking the lead on all assessments for ILF and Direct Payments”, thereby allocating Local Authority responsibilities to the ILF rather than the other way around.
Criticisms made by the Report of ILF accessibility could equally be levelled against Local Authorities including a lack of user-friendly information (both information packs and website), the length of time for applications to be processed and irregular reviews. At a Local Authority level this situation is set to become even worse through further cut-backs with social workers already stretched beyond capacity. A recent investigation by the British Association of Social Workers (BASW) found that 85% of social workers have seen notable cuts to services in the last 12 months. Two-thirds of the 1,100 respondents said they were concerned about the impact of unmanageable caseloads on their ability to deliver services. It is difficult to reconcile the evidence from the coalface of Local Authority managed Adult Social Care with the Minister’s assertion that “there has been a significant development in the mainstream social care system since the Fund was established” sufficient for the ILF to be adequately administered through Local Authorities.
The Review refers to the difficulties experienced by disabled people in having to negotiate separate and often inconsistent systems in order to obtain the support they need but this is not sufficient justification for closing the ILF support stream. Henwood and Hudson write, “it is wrong that individuals should have to understand and adhere to different operating systems and cope with all the accompanying confusion, bureaucracy and stress” and they refer to different and contradictory operating systems in respect of issues such as charging, the treatment of benefits, occupational pensions, capital limits and upratings. Alternatives suggested by government included the idea of a single integrated system under Local Authority control, although Government swerved the decision on future funding of social care by leaving it out of the Queen’s Speech.
The reality of an integrated system will be a system that fails to provide an equivalent level of support to that offered by the previous dual and arguably duplicated systems. This idea is supported by direct experiences of Local Authority social care provision. In their response to the Green Paper ‘Caring for our Future’ the ILF Trustees and senior management commented:
“Our experience suggests that whilst many Local Authorities have a clear commitment to independent living, local authorities in general are increasingly and understandably focussed upon essential basic care and not upon full independent living for their service users, often being confined to meeting only critical needs other than when engaged in a joint package with the ILF.”
The reality of the limitations of a single, mainstreamed support package has been put forward by the Association of Directors of Adult Social Services who told the Joint Committee on Human Rights Inquiry into Independent Living that, “in the current climate, they are unlikely to provide replacement funding for all those who would previously have qualified for ILF grants.”
Also they will have to review everyone under Fair Access to Care Services, not ILF criteria. Further proof of this reality is borne out by an assessment of the relative costings involved: whereas the ILF runs on a remarkably low percentage of overheads to total budget of around 2%, Local Authority administration will take up a notably higher proportion of the budget, thus diverting funds away from support for disabled people. In a recent survey undertaken by DPAC, out of 20 Local Authorities questioned, not one had overheads for the administration of personal budgets below 10% and the highest was 24%.Given the choice most disabled people would elect to continue with the frustrations of managing two separate systems if it means holding on to more of the support needed to continue living in the community.
The Review identifies self-determination as an area in which the ILF does not perform well when compared to cutting edge policy but ignores the reality of Adult Social Care practice as experienced in the day to day lives of disabled people. Henwood and Hudson write “Our evidence does not indicate that the ILF performs well against such criteria, particularly in comparison with the leading edge of policy and practice that is apparent elsewhere (notably in the approach of In Control).” Self-determination is described as making choice a reality, requiring the development of life planning, user-led support systems, self-assessment, and resource allocation systems. At the time of carrying out the Review Individual Budget pilots were new, however there was ample evidence of the failure by Local Authorities to translate the theoretical framework of choice and control offered by Direct Payments into actuality for all but a small percentage of disabled people. This should have stood as a warning against assumptions that cutting edge models of best practice would inevitably lead to general best practice. In December 2011 ILF Trustees estimated that some 60% of ILF users were still not in receipt of a Direct Payment from their Local Authority with this rate varying significantly in different areas of the UK and for different impairment groups. They commented: “This suggests that there is a long way to go before all social service users are able to exercise full choice and control over their care arrangements, and that this will continue to be a brake on the roll out of personal budgets.”
Given the dramatic variation in the roll out of personal budgets from area to area it is not only unfair but inappropriate to compare the ILF against best practice in Adult Social Care as this presents a picture of inadequacy that is at odds with the experiences of many ILF recipients. Henwood and Hudson conceded that many ILF recipients spoke highly of the positive impact the Fund had had on their lives, including quotes from disabled people saying such things as “The ILF means I can get my life back” and “ILF allows you to live the life you want” . The experiences of members of the campaign Disabled People Against Cuts (DPAC) are similar as reflected by the personal account included below:
Juliet’s Story – the importance of ILF funded support
I am 26 years old. My life changed when Rheumatoid Arthritis took hold meaning that I had to drop out of art school. My health deteriorated drastically and I lost all my mobility, I couldn’t walk or get out of bed because of pain or the discomfort of my swollen joints, and I couldn’t even do the simplest of tasks anymore.
My family weren’t able to cope and I was given basic care from social services which consisted of 1 hour for the morning call to get me up, bath me, take me to the toilet, dress me and feed me. The lunch time call was 30 minutes; to make me lunch, help me to eat and take me to the toilet.
Even though I had this care in place my problems got worse; I lost so much weight combined with spending every day in bed put me at higher risk of developing bed sores. I spent all day everyday in my room, each day blurring into the next making me feel depressed, isolated and alone. I was just wasting away in my bed. This caused muscle wastage; I slowly lost all the muscles used to maintain balance and to walk making me more prone to falls. I didn’t recognise myself; I felt like I was cocooned in the shell of my body feeling helpless, this caused panic attacks.
All of this put a strain on my home and social life. Before I had ILF my parents who both work full time had to help me with the most basic of tasks (getting undressed, eating dinner, assistance getting to bathroom during the night) making me feel like a burden to my own family. My social life hit a stand still as I was unable to go out and meet friends as I was to unwell to really leave the house.
I felt like a prisoner stuck in a body that wouldn’t work, my life was restricted to my bedroom unable to eat, walk, use the toilet, even breathing and sleeping was agonizing.
Once I got ILF, I used the extra hours of support to go to hydrotherapy and physiotherapy to build up my muscle strength. I slowly got my balance back lowering my risk of falls and gradually improved my walking meaning I wasn’t as reliant on my wheelchair and no longer at risk of bed sores as well as no longer had panic attacks about falling. I also used the extra support to get out of the house and see friends, go shopping and go to the cinema, which improved my relationships with my friends and family. I was part of the world again. I also used the extra support to help me give back to my family by making them a meal every now and then and no longer relied on my family for so much which meant I didn’t feel like a burden anymore, this improved my home life a great deal.
As my confidence grew I used my extra support to help me attend a local committee for disabled people where I volunteered. This gave me purpose in life, opportunity to meet new people, make friends and the experience I needed to get the job I have today. I wouldn’t have been able to do all of this without the extra hours of support that I received from ILF. The basic care given by the local authority is to maintain your primary needs to survive (washing, dressing and eating). But life is so much more than that. With ILF I have quality of life and support to be a pro-active, positive person who is part of the community. I have a paid job, a social life, I am driving and I have just moved into a flat with my fiancé. I would not change being disabled and I think my condition has brought more to my life than it has taken away but it has only been possible for me to feel this way because I have the support I need.
One key component necessary for self-determination cited by Henwood and Hudson is under increasing threat from current government cutbacks; they point to the importance of user led organisations including CILs, acknowledging a clear correlation between direct payment support services controlled and run by disabled people and successful implementation of a direct payments strategy, and recommending “that the Government’s commitment in the Life Chances report to creating a user-led organisation modelled on existing CILs in each locality by 2010 be firmly implemented”. In reality not only was the 2010 deadline not met, existing user led organisations are under increasing threat both from the continued marketization of disability support services and from spending cuts. In 2007 Barnes described how “local and national user led organisations are severely disadvantaged in the increasingly competitive market for local and national contracts for independent living and direct payment services” and by 2012 the situation has only grown worse. A recent survey by Inclusion London found that 1 in 5 Deaf and Disabled People’s Organisations in the capital facing closure as a result of cutbacks. The launch in June 2011 of the Office for Disability Issues Strengthening User Led Disabled People’s Organisations programme and accompanying Facilitation Fund has done little to alleviate the problem with a maximum award of £30,000 over 3 years, restrictions that preclude spend on items including staff costs and a requirement to invoice with proof of payment rather than in advance. The importance of user led brokerage and peer support services for effective implementation of personal budgets is well evidenced and the struggle for survival facing many user led organisations is yet another factor jeopardising the successful roll out of personalisation in Adult Social Care. The capacity of Adult Social Care to perform under criteria relating to self-determination is at this present time questionable at best and arguably far more questionable than the ILFs.
A lack of flexibility is raised by the Review as a problem area for the LF and the Report criticises the ILF for being prescriptive on what it will fund. In conducting their Review the authors state that “it was clear that restrictions on what ILF funding can be used for limits the flexibility that people require and effectively constrains the choices they are able to make.” The ILF’s focus on ‘objective costing’ is judged to be incompatible with the outcomes focus of Individual Budgets which allows more flexibility than the ILF’s limitation to spend on Personal Care and Domestic Assistance.
In reality Local Authorities are not following the ideal, flexible model of Individual Budgets against which the Review compares the ILF. They are also guilty of being prescriptive in what they will fund and increasingly so under austerity pressures. The theory of the In Control model was that Individual Budgets could be used for whatever disabled people chose so long as it was agreed within a support plan, enabled them to meet their identified outcomes and was not for anything illegal, not for rent or mortgages, bills or groceries. How this works in practice varies from area to area. It was always a difficult concept for risk-averse Local Authorities to grapple with but now that Local Authorities are desperately searching for savings in their social care budgets, the direction of travel is for personal budgets becoming more not less prescriptive. In London Borough of Bromley personal budgets are rarely agreed for expenditure on anything other than personal care with disabled people reliant on the ILF for any wider independent living support. In various areas including London Borough of Newham support plans that budget for travel costs are routinely turned down on the basis that DLA mobility component already covers travel. In Leicester the local CIL challenged a similar policy which regarded the use of personal budgets for travel costs as ‘double funding’ but the lack of lack of objective costing used through the RAS system allows people’s packages to be cut or set at an inadequate level without a rationale for doing so. The recent judgement in R(KM) v Cambridgeshire County Council was about the RAS not being transparent whilst a recent poll by Community Care found that 48% of social workers consider personal budgets to be set at too low a monetary value to achieve personalisation. Since the Review the ILF has on the other hand become less prescriptive as a result of its inclusion as part of the Individual Budget pilots and the failed Right to Control Trailblazers. A lack of flexibility in how ILF monies can be spent on support for disabled people fails to provide adequate justification for closure of the Fund and for re-routing through Local Authorities when the ILF is compared not to the theory of In Control but to how personal budgets are working in practice.
Discrepancy between Government Proposals and Review findings
The Review’s longer term recommendation that the Independent Living Fund should be closed was based on a view that it was anomalous and its functions needed to be integrated into a wider, more streamlined system of independent living support that is more able to deliver the portability and consistency that disabled people valued in the ILF. The Report points to areas of learning for any integrated system from the expertise of the ILF with regards to its national portability and the approach of ILF assessors preferred by many disabled people to that of their social workers. Although the anomalies of the ILF being a discretionary trust are recommended for attention, the Review finds that reporting and accounting for the functions of the ILF should remain within the DWP.
The Review does not recommend that the ILF should close and its role be taken over by Local Authorities in line with local priorities and local accountability. Maria Miller asserted that “The outcomes that [the ILF] supported can now be delivered within the Local Authority managed care and support system through personal budgets and direct payments”. The Review does not support this claim with its criticism of postcode eligibility and calls for a national RAS and is more cautious in its approach: “We recommend that no immediate transfer of ILF funding and remit is made to local government, but in our Review of the Independent Living Funds conclusions we recommend that in the medium term there should be full integration with Individual Budgets.”
The Review did not find the ILF financially unsustainable. Michael Ellis MP asserted that the current government’s opinion that the ILF is financially unsustainable was shared by Henwood and Hudson. In fact, some of the Henwood and Hudson Report recommendations would have required significant additional expenditure by government, including extending eligibility to recipients of the Middle Rate Care Component of Disability Living Allowance as well as older people and those with terminal illness and less than six months to live.
The Review did make a number of recommendations which were never actioned. There has been no explanation for how Henwood and Hudson’s ‘under-pinning assumption’ that there should be “no loss of service for ILF users” can be reconciled with proposals for Local Authorities to take over administering the Fund. Any analysis of the figures argues against the possibility of government being able to ensure this whilst pursuing their current course. We have already mentioned that the recommendation to implement recommendation 4.3 of the Improving Life Chances report, to ensure there was a user led organisation on the model of a centre for independent living in every local area, was missed. Recommendations which would have had financial implications were also ignored including work on removing the joint ceiling cap, making ILF funding available to support disabled people in their parenting roles, removing the requirement to take a partner’s benefits capital into account in assessing for ILF eligibility, disregarding Disabled Students Grant and any loan in calculating an ILF award, and taking account of the costs disabled parents face if their children are in further or higher education. That none of the groups of people who would have been affected by the above recommendations will benefit from the ILF’s integration into Adult Social Care is a surety with awards subject to the multiple limitations of FACS, charging and ever decreasing budgets.
Henwood and Hudson are happy to go along with government claims that current policy with respect to the ILF is underpinned by their Review. In a written ministerial statement on 13 December 2010, Maria Miller announced that following consultation it had been concluded “that the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable”. In an article in Community Care Henwood and Hudson pointed to how this decision reflected the core conclusion of their Review “that it is highly anomalous for significant amounts of public money to be placed in the hands of a cash-limited, discretionary fund administered by a board of trustees.” It should be noted that nobody, including the trustees, has ever argued that a discretionary trust is the most appropriate way to deliver ILF support by the way. As we have seen, a closer examination not only of their actual findings but crucially of the value base underpinning the Review as compared to government proposals for the future of the ILF reveals less of a fit than either they or government would have us believe.
Conclusion: What is at stake and what we need
The scale of what is at stake for disabled people with the loss of the ILF is overwhelming, both at an individual level in terms of loss of autonomy and the choice to live in the community and politically in terms of the position of disabled people in society and our right to citizenship. By comparison, issues around how the trust is administered and duplication of systems pales into insignificance. Do disabled people really care how many people are signing off pieces of paper when they are being forced out of their homes into residential care, when disabled young people unable to apply for ILF are seeing a future ahead devoid of independence and any of the life chances enjoyed by their non-disabled peers? If Henwood and Hudson want to take credit for bringing about this situation then more fool them. Congratulating the government on the decision to take action over the ILF will not persuade them to be any more careful with protecting against loss of service for the existing ILF recipients and will do nothing to influence translation of rhetoric about establishing national equity in social care into any sort of reality. This government is set on pushing through reform based on clear ideological agendas: their determination on the one hand to undermine the welfare state and remove entitlement to state support and on the other to promote localism. The ILF does not fit with these agendas and closing it is a way to save money. The interests of disabled people are about as far from the government’s plans for the ILF as they could be.
The current situation whereby the ILF has closed to new applicants with no alternative put in its place is already having an impact which sees the UK government in breach of the rights of disabled people under Article 19 of the UN Convention on the Rights of People with Disabilities and the rights for disabled people to live in the community with equal choices, to choose where and how they live, to have the support they need in order not to be socially isolated or segregated and to have equal access to community services. Worcestershire and Newcastle are examples of Councils proposing to cap the amount they will pay for community-based support for disabled people, forcing disabled people with needs in excess of the cap to either rely on family support or to have to move into residential care. ILF Trustees and Senior Managers have reported that “Local authority representatives have told us that supported living placements for this group are becoming harder to finance since ILF stopped accepting applications, and that the removal of the ILF as exemplary provider of new large support packages is helping to reinforce a local view that Councils can now ignore this aspect of equality for disabled people with their non-disabled colleagues”. However there is no statistical evidence on what is happening to disabled people who would previously have been eligible for ILF and the impact of the closure from March 2010 because, as DPAC has uncovered through surveying Local Authorities, no one is monitoring this. It is clear that Local Authorities are not prepared to make up the difference: Birmingham stated “The Council does not make up any difference in funding” while Northampton referred to finding ways to enable disabled people to meet their needs (previously covered by the ILF) themselves!
To date there has been no adequate consultation or review on which to justifiably base a decision to firstly close the ILF and then to transfer its functions to Local Authorities. The Henwood and Hudson Review concentrated on improvements needed within the internal operational and strategic workings of the ILF and lacked any satisfactory evidence-based analysis of the place of the ILF within the context of wider social care and support systems. They concluded that the set up of the ILF resulted in “inequity, lack of accountability, overlap and duplication of functions, arbitrary decisions and major confusion for disabled people seeking support for independent living”. All evidence points to the fact that these failings will not be addressed by transfer to Local Authority administration, they will be severely compounded. The former Minister spoke about the need for “the social care support needs of all disabled people to be delivered equitably as part of local authorities’ broader independent living strategies” but how this can be achieved within a localism agenda and “in line with local priorities and local accountability” is doubtful. In a more recent Review Henwood writes “There are some considerable tensions between the pursuit of national consistency, portability of entitlement and localism. How these will be resolved in practice is unclear.” Meanwhile there is a weight of experience to indicate that Local Authorities will not be able to successfully assume the functions of the ILF and deliver an equivalent level of service to support disabled people in the community. ILF Trustees and senior management have commented 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”. There are many unanswered questions concerning government proposals for the ILF, for example how can there be no loss of service for current users given the higher overheads costs that Local Authorities will require from the total ILF budget in order to administer it, also how assuming the functions of the ILF can be satisfactorily achieved when social workers are unable to manage their existing workloads.
In light of a lack of adequate consultation and review to date and the seriousness of what is at risk for disabled people and for civilised society it is not unreasonable to expect a dedicated consultation and review to examine the question of independent living support for disabled people and how this can be provided in line with the UN Convention on the Rights of Persons with Disabilities. This will not be achieved through the Care Bill which will be focused on the wider question of future funding for social care and will not cover the detail needed to ensure protection under the UNCRPD. This is something we therefore need to demand.
This is an updated version of a critique of the Henwood and Hudson report that appeared on the DPAC site in 2012. It is one which is now even more relevant with the additional cuts to local authorities, the failings and problems of the Care Bill processes and the cumulative attacks on disabled peoples’ right to live independently.
Not only should the long-term future of the ILF now be secured, but it should be re-opened to new applicants –anything else represents a retrogressive step in the promotion of independent living and a breach of article 19 of the United Nations Convention on the Rights of Persons with Disabilities.
Statement by Anne Pridmore, Gabriel Pepper and Stuart Bracking
As three of the Independent Living Fund users who have challenged the legality of the government’s decision to close the Fund, we welcome the Appeal Court’s unanimous ruling that this decision should be quashed.
Given the Government has decided not to appeal to the Supreme Court, the new Disabled People’s Minister Mike Penning will now have to reconsider the Government’s approach to the future of the Independent Living Fund and its users.
Rather than being the ‘privileged group’ referred to in the High Court judgement, the Appeal Court has acknowledged the potentially very grave impact the closure of the Fund would have on its users, putting seriously in peril the ability of a large number of people to live independent lives in their own homes, and pursue activities such as employment and education.
They concluded that when Disabled People’s Minister Esther McVey made her decision in 2012 to finally close the Fund by April 2015, she did not properly consider the need to advance our equality of opportunity, minimise the disadvantage we face, encourage independent living, and promote our participation in public life and other social activities.
For a generation, the Independent Living Fund has provided funding to support disabled people with complex conditions who need personal assistance to live in the community.
Twenty years ago, Disabled People’s Minister Nicholas Scott who founded the Fund in 1988 explained its importance to the House of Commons (25/2/1993): “It has helped those severely disabled people who did not want to go into residential care but who could not live in the community without a considerable degree of domiciliary support to maintain their independence. That is something that we can all applaud and welcome.” This is as true today as it was then.
In the same speech, Nicholas Scott also acknowledged there were limits to the financial support local authority social services could provide some disabled people: “If it is necessary for extra help to be provided….it will be open to the social worker who assesses the needs of disabled people to say, ‘We can provide services up to this level but we believe that a further level of care is necessary,’ and then to turn to the Independent Living Fund.”
The Independent Living Fund has provided a platform for social opportunities to be pursued by severely disabled people in large numbers for the first time in history.
The careers, family life, friendships, social activities and roles people have built for themselves could be undermined and in many cases dismantled if the Fund closes.
Although the Appeal Court ruled the consultation which preceded Esther McVey’s closure decision was lawful, we believe there is now an opportunity to reflect on our society’s responsibilities towards those who rely on the welfare state to keep them safe, healthy and free of distress.
Last year, 2000 individuals and organisations responded to this consultation, but the Court of Appeal held the real substance of the consultation responses were not conveyed to Disabled People’s Minister Esther McVey. An opportunity for an open, democratic debate was lost.
By responding to the World Health Organisation’s recommendation in the World Report on Disability that countries should provide services in the community and not in residential institutions or segregated settings and plan how to achieve this, the human and civil rights of disabled people of all ages could be respected, not just those of Independent Living Fund users
Until a decision is taken to save the Independent Living Fund and open it to new applicants with adequate funding to meet people’s individually assessed needs, the fear many disabled people have expressed about their future will not disappear.
This fear stems from an understanding of the impact limited support in the community will have on people’s life chances, or for some of us the low standards and rigid approaches to personal care found in residential and nursing homes which place people at risk of skin conditions, sores and sepsis.
Many Independent Living Fund users are also acutely aware that, as long-term employers of personal assistants, if they are forced into residential care their knowledge of the law and care standards will bring them into collision with poor management and abusive cultures where they exist.
There is also a significant risk for people with learning difficulties and/or autism of physical and emotional abuse in segregated settings where restraint and drugs are used to control behaviour that is defined as ‘challenging’ rather than being approached with patience, compassion and kindness.
The fear of residential care that exists among Independent Living Fund users with ‘round-the-clock’ needs also exists among large layers of the general public.
When reconsidering the Government’s approach to the future of the Independent Living Fund, the new Disabled People’s Minister Mike Penning could give the Fund a long-term future under the democratic control of its users, but also commit the Government to respect existing rights to an individual assessment of need.
His Government could give disabled people of all ages the right to live in the community throughout their lives with the personal assistance and professional services they need, rather than the artificial and segregated environments found in residential care.
We urge Mike Penning to grasp this opportunity and remove the uncertainty many thousands of severely disabled people and their families have experienced for several years.
We would like to express our sincerest thanks to: our fellow claimants Paris L’amour and John Aspinall and his parents Evonne and Paul Taylforth; the tireless work of solicitors Louise Whitfield of Deighton Pierce Glynn, Kate Whittaker and Diane Astin of Scott-Moncrieff and Associates, and our barrister Mr David Wolfe QC; the supportive intervention of the Equality and Human Rights Commission; and Independent Living Fund user Kevin Caulfield’s networking and guidance during the case.
We also acknowledge those Independent Living Fund users who have highlighted the impact closure would have on their lives, particularly Penny Pepper, Sophie Partridge and Mary Laver, which is not easy given the privacy most Independent Living Fund users and their families strive for.
We would also like to thank: Disabled People Against Cuts and Inclusion London for the campaign coordinated by Linda Burnip, Debbie Jolly, Tracey Lazard and Ellen Clifford; other users of the Fund and disabled activists who have attended protests and vigils and supported the campaign; the two thousand organisations and largely anonymous individuals who responded to the Independent Living Fund consultation a year ago; the support of the PCS union and the workers at the Independent Living Fund; our personal assistants; the work of campaigning journalist Kate Belgrave; and the consistent reporting of this issue by John Pring at the Disability News Service.
The future is ours to shape, but only if the personal assistance we need is present.
Breaking news: the claimants in the ILF case have heard that the Government will not be appealing the decision taken by the courts on Wednesday to quash the closure of the Independent living Fund. All processes related to the closure e.g transition interviews for ILF users have been halted.
We all owe a great debt of gratitude to the five ILF users that took this to the courts and the solicitors and barristers who worked tirelessly, as well as all those involved in the research processes, and in supporting this. It has proved that disabled people can and will fight back, it has proved that disabled people can win.
DPAC want to thank all that supported this . We want to say to those organisations that didn’t , or claimed nothing would change, if you do not fight back now at a time of massive and savage cuts maybe its unlikely that you ever will, in which case you can no longer speak in the name of disabled people-there is one voice and that is the voice of people at the grass roots who appear to be fighting everything without you.
DPAC is proud to have supported and worked with the ILF case since it began, and we will continue to work against the cuts and abuse of human rights by this Government and any other through every means possible
for more on the case see: http://www.internaldpac.org.uk/DPACClone/2013/11/appeal-court-quash-decision-to-close-indepdent-living-fund/
It is now up to the Disabled People’s Movement to intensify its campaign to save the Independent Living Fund and defend independent living rights with the support of the PCS union and all those opposed to closure
BBC News link: http://www.bbc.co.uk/news/uk-politics-2483455
On the 14th October, five ILF users will appeal against the previous court decision that the ILF consultation was carried out fairly at the Royal Courts of Justice. DPAC will be there again and, again have a vigil outside the courts to show support-we will update with further details as they become available.
The initial court case showed that the funds for ILF when transferred to local authorities will cover just one year, something that local authorities did not appear to be made aware of by this Government. A write up from those documents can be found here: http://www.internaldpac.org.uk/DPACClone/2013/03/summary-of-secret-correspondence-from-the-dwp-to-mcvey-on-the-ilf-closure/
In the meantime you might like to see some of the stories from those at risk of losing the support to independent living at http://www.internaldpac.org.uk/DPACClone/independent-living-fund/