Act Now to Save the Independent Living Fund (ILF)- an article by a disabled activist involved in the ILF campaign
When ILF users and supporters involved in Disabled People Against Cuts (DPAC) delivered a letter on 13 September to the new Minister for Disabled People, Esther McVey MP, asking for a meeting to be arranged so they could discuss their concerns with her about the government’s plan to close the Fund, they were greeted by a very friendly Metropolitan Police press officer and several vans full of Tactical Support Group officers parked immediately in front of the Department of Work and Pensions (DWP) HQ in central London.
Why was there a need for the DWP and Met Police to use the ‘carrot and stick’ approach? What were the ILF users present doing wrong?
What was absent was a willing team of senior civil servants from the DWP prepared to come outside and discuss with the ILF users why the DWP are running a consultation that is misleading and fails to discuss a range of options for the ILF. Including that favoured by many in the disabled people’s movement of a national Independent Living Fund under our control, free of political interference, which provides one source of personal assistance funding as of right for all disabled people, irrespective of their age.
Four days after these ILF users were greeted with the Met Police, Esther McVey and the DWP hypocritically announced the formation of a new Disability Action Alliance “to help respond to the ideas put forward by disabled people and their organisations on living fulfilling lives”. Clearly though this does not include ILF users who oppose a return to the forced institutionalisation of the past or living in the community with limited life chances, and who are trying to protect the interests of 20,000 families and the livelihoods of 15,000 personal assistants and care workers.
The Disability Action Alliance will help to implement the government’s new disability strategy. On 17 September, the Office for Disability Issues published the related ‘Fulfilling Potential – the Discussions So Far’. In the Easy Read document it explains on page 27 that “residential care” is “where people go to live when they cannot get the support they need to live in their own home”. It reveals: “The government is going to change the rules about the way people are charged for residential care. This will mean that any money a disabled person gets from their job will not affect the residential care charge.”
Given people with learning difficulties not living with their families usually have their own tenancies in Independent Supported Living schemes, and people with severe physical impairments live in their own homes with ILF and local authority funded personal assistance, why would disabled people of working age be in danger of losing their wages to residential care fees unless a policy assumption is being made in government that residential care will become the norm once again for some of us in the future? After all, it was the Independent Living Fund that allowed many disabled people to leave residential care in the past before it was closed to new applications in May 2010.
What you can do
- Be an ‘ILF Champion’ – be proactive and do not assume others in your area are campaigning to save the ILF.
- Respond individually or through your disability or carers organisation, trade union, community group and so on to the government’s consultation ‘A Future for the Independent Living Fund’ which closes on 10 October 2012. You can find the documents on this page: https://www.dwp.gov.uk/consultations/2012/future-of-ilf.shtml
- The online version of the consultation is unreliable, so give yourself the time to respond by post if necessary and keep a copy of your comments.
- Respond to the online survey being run by Disability Rights UK as their response to the government’s consultation will include an analysis of this survey. This survey ends at the end of September and can be found at: https://www.disabilityrightsuk.org/ilfconsult.htm
- If you know other ILF users or their families, contact them and organise a local ‘Save the Independent Living Fund’ campaign in your town and city.
- Organise a public meeting with local disability and carers organisations. Ask your Council’s Director of Adult Social Care to circulate the information to ILF users and their families and/or contact your local newspapers and radio stations.
- Write to your MP and/or go to their monthly surgery and explain the issue to them and what your feelings are about the possible closure of the ILF. Explain it from your perspective as a disabled person, family carer, family friend, personal assistant or care worker, social worker or member of the public.
- Contact your local Council leader and the Cabinet member for adult social care and ask them what they are doing to stop the closure of the ILF. If nothing, organise a lobby of the next Council meeting.
- Keep DPAC informed about what you are doing and try to coordinate local campaigns with others in your area and region.
10. Share this information and article as widely and as quickly as possible.
Criticisms of the consultation process:
- The DWP consultation is deeply flawed and demonstrates a ‘couldn’t care less’ attitude towards 19,000+ ILF users and their families.
- There is no equality impact assessment – this avoids the need to discuss the ILF’s history, policy implications and practical examples of what closure would mean.
- Each ILF user is subject to regular reassessments so it is easy to identify what the loss of ILF funding would mean in 19,000+ cases.
- Questions steer respondents towards the option of closure and transfer of responsibility to local authorities.
- There is no discussion of the option of a national Independent Living Fund under disabled people’s control free of political interference that provides one source of personal assistance funding as of right for all disabled people irrespective of their age.
- The shortest possible timescale for the consultation of 12 weeks has been adopted.
- Only 14 consultation meetings have been organised across the UK with very limited numbers.
- These have given less than 2% of the ILF’s 19,000+ users the opportunity to attend, a figure that falls well below 1% if family carers are factored in.
- The ILF itself has organised the consultation meetings at the behest of the DWP – ILF trustees are in conflict with their fiduciary duty to defend their beneficiaries’ interests and actively oppose closure.
- The Easy Read document gives no practical examples that set-out what closure of the ILF would mean, an essential step for disabled people who find comprehending abstract ideas difficult.
- ‘The Future of the Independent Living Fund’ is an English consultation document for a UK-wide fund – there is no discussion of a scenario where national independent living funds are set-up in Wales, Scotland or Northern Ireland while there is transfer of responsibility to local authorities in England.
The Independent Living Fund’s History
An Erroneous and Misleading Assertion
- The DWP’S consultation document ‘states: “The fund was originally established for a maximum of 5 years and was expected to support around 300 people.”
- This assertion is erroneous and deliberately misleading to give the impression the ILF was and is an anomaly.
- While the ILF was set-up in April 1988 to help 250-300 people who were directly affected by the loss of domestic assistance addition with changes to the social security system, disability organisations had a clear view from the start that it would help many more than this.
- In the July 1994 edition of Critical Social Policy, Bob Hudson recalled: “The Disablement Income Group (DIG) estimated the figure to be nearer 1500, while the more radical Disability Alliance saw potential demand running into several thousands.”
- By 30 November 1988 the new Fund had received 2,502 applications with 354 people having received assistance and 1,574 being assessed.
- Nicholas Scott MP, Minister for Social Security, reported to Parliament on 19 December 1988 that: “I understand that 16,000 posters and 55,000 leaflets have been produced by the ILF, for distribution to directors of social services, health authorities, voluntary organisations, and so on.”
- These facts and the ILF’s proactive marketing of itself are not consistent with the assertion the ILF “was expected to support around 300 people.”
Responding to Unmet Need
• The National Assistance Act 1948 marked the beginning of the welfare state and the end of the Poor Law.
• In the 1960s, Paul Hunt and other disabled people in residential care started to assert their right to be treated equally – this was one of the main seeds in Britain for independent living, personal assistance, the disabled people’s movement and social model of disability.
- The Disablement Income Group (DIG) was set-up in 1965 to campaign for disability benefits and services.
• In 1970, section 2(1) of the Chronically Sick and Disabled Persons Act created an individual right to services once a person was assessed as having a need and their local authority’s eligibility criteria was met.
• Attendance Allowance was created in 1971 with day and night time rates for disabled children and adults – the original ‘cash for care’.
• A DIG Policy Statement argued in 1987 for the creation of “a third rate of attendance allowance, substantially higher than the rates presently payable, ….to enable even the most severely disabled to buy the help they need to live outside institutions. As with the existing attendance allowances, this should be payable to the disabled person, thus giving disabled beneficiaries a measure of control over their own lives.”
- When the ILF was set-up there was a policy flux as changes to the social security system were being made and Sir Roy Griffiths reforms to community care were being debated.
- In 1988, while the ILF helped to resolve a bureaucratic problem for the Department of Health and Social Security (DHSS), for DIG and the British Council of Organisations of Disabled People (BCODP) the ILF freed disabled people for the first time from the forced institutionalisation associated with the localism of the Poor Law and the early welfare state.
- There were differences among disability organisations. DIG was centrally involved in the development of the ILF and nominated with its Scottish counterpart 5 out of 10 ILF trustees. The disabled people’s movement opposed the discretionary nature of the ILF. The BCODP organised a demo on 28 July 1988 that demanded ‘Rights Not Charity’ and won the ‘hearts and minds’ of young disabled people.
• The development of the ILF quite literally revolutionised the social opportunities of a generation and meant for the first time severely disabled people could become or continue to be parents, care-givers, workers, students, volunteers, partners, and of course, disability activists.
- It gave disabled people the freedom to move from one area to another because their care packages were portable in a way that was consistent with the principle of free movement now promoted by the European Disability Forum.
- The ILF provided funding for critical personal care support and personal assistance not just in the home, but also in community settings in a person’s local area or in other parts of Britain and abroad.
- It also meant thousands of people with learning difficulties started to receive funding for community based support that enabled them to live active lives in the community on their terms.
- The opportunities and life chances ILF users have experienced since with the help of their personal assistance are entirely consistent with the aims and principles of the United Nations Convention on the Rights of Persons with Disabilities.
An extension of the social security and national insurance system
- In 1988 the DHSS was split into the Department of Health and Department of Social Security. The latter maintained responsibility for the ILF, which reflected the fact the Fund was itself an extension of the national insurance and social security system.
- By the end of 1992, 18,000 disabled children and adults of all ages were receiving ILF support.
- The ILF freed disabled people from the unwillingness of local authorities to meet their statutory duties under section 2(1).
- The ILF would only give funding to those living in the community and its practice has been to maintain this for life.
- No local authority can ever make this commitment as it would mean providing community based services to all older disabled people over 65.
- The ILF’s creation was also recognition that broad resource-led allocations such as Attendance Allowance or even today’s personal budgets were insufficient for severely disabled people.
- The ILF recognised the needs of people with complex physical impairments or learning difficulties or autism required assessment in a personalised way with the full involvement of a social worker with the experience to ensure a person’s needs were fully met.
- And the cost of care should be established based on the most appropriate way of meeting these needs from person to person.
- The DWP’s consultation forgets to mention the closure of the ILF will mean the loss of this approach in social care, marking a fundamental and regressive change.
Central Government’s Bureaucratic Mismanagement of the ILF
- Bob Hudson in Critical Social Policy in July 1994 pointed out: “Once the ILF had in effect uncovered a huge and legitimate demand for independent living amongst severely disabled people, the government took fright at the contents of this Pandora’s box, and began to seek ways of restricting demand and diverting responsibility.”
- The ILF used the age criteria for Attendance Allowance from the start, but government funding restrictions eventually stopped disabled children under 16 and people aged over 75 from accessing the ILF.
- An opportunity to create one cohesive funding system for personal assistance and social care was lost and gave way to the current bureaucratic maze where large care packages can be made up of several sources of funding – including local authority adult services, Access to Work, primary care trusts, education services, children’s services, Disability Living Allowance and the Independent Living Fund. Given the multiple layers of personal assistance funding, the assertion there is a “mainstream care and support system administered by local authorities” is a myth.
- After April 1993, the £200 of local authority services threshold for the new ILF 93 was introduced.
- Rule changes initiated by the government also led to the means-testing of ILF users whereby any ILF user who worked was expected to contribute all their wages above income support levels to their care package – not surprisingly many young ILF users were dissuaded from finding paid employment.
- Maria Miller’s Ministerial Forward recognises the ILF has applied its eligibility criteria consistently across the country.
- Before it was closed to new applications, the ILF had a reputation for a very rigorous assessment process – applications from the local authorities with the greatest uptake were needs-led and necessary.
- The significant variations in uptake between local authorities stem in part from the different ways local authorities spent their part of the £230 million Independent Living Transfer between 1993 and 1996 – the most progressive ring-fenced it for severely disabled people.
- One of the ironies that will result from the closure of the ILF if funding is transferred from central government to local authorities on a per capita basis is the very local authorities who have done most to promote independent living rights through the uptake of ILF will lose out the most.
Changes in Social Care
• Maria Miller argues there’s been a fundamental change in social care in the last 20 years citing the development of ‘personal budgets’ – this puts the cart before the horse.
• The changes proposed in the recent social care White Paper will see a statutory right to personal budgets introduced, but repeal of the section 2(1) duty.
• A needs-led, personalised approach is to be replaced by a resource-led, administrative approach.
• Since the 1990s legal judgments that allow councils to consider their resources when meeting need and to choose different options based on cost there’s been a search nationally for a mechanism to control costs.
• The Department of Health, Department for Work and Pensions, Association of Directors of Adult Social Services, and the Care Quality Commission and its predecessors have developed personal budgets and personalisation through the misnamed In Control to this end.
• Statutory and professional bodies tasked with safeguarding disabled people worked to undermine the statutory duty and individual rights of section 2(1).
ILF Review in 2007
• The ILF review in 2007 commissioned by DWP recommended “the ILF should be fully integrated with personal budgets rather than existing as a parallel system of social care funding” when personal budgets were only being piloted in 13 local authorities. Its authors Melanie Henwood and Bob Hudson helped prepare the red carpet for personalisation and personal budgets.
• It recommended a proven model that was successful and gave disabled people ‘choice and control’ should be ditched for an experimental idea that still has major teething problems.
- The ILF review chose not to debate Colin Barnes proposal from 2004 for a single national independent living fund for all personal assistance and direct payments under disabled people’s control, or other examples of European countries where national independent living schemes successfully sit alongside local services.
• The ILF review continued the ‘paternalism’ that disabled people sometimes experience when changes are being proposed about their lives and held only 6 consultation meetings with 120 ILF users and carers. The principle of ‘nothing about us without us’ was lost in translation.
- The confusion about the intentions and recommendations of the ILF Review led Sue Bott, the Strategic Director of the National Centre for Independent Living (NCIL), to declare in NCIL’s ‘Independently’ newsletter in April 2007 that: “NCIL is in support of the recommendation not to transfer the ILF to local authorities.”
- Yet Henwood and Hudson wrote in Community Care on 14 December 2010, the day after Maria Miller MP’s parliamentary statement that the ILF was “financially unsustainable”, about their review: “Our core conclusion was 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, resulting in inequity, lack of accountability, overlap and duplication of functions, arbitrary decisions and major confusion for disabled people seeking support for independent living. / This is an anachronistic and paternalistic model that should have no place in a 21st century system of care and support. We recommended therefore that the ILF should be fully integrated with personal budgets rather than existing as a parallel system of social care funding. / Despite welcoming our report, the previous administration failed to act on it, and the coalition government should be congratulated for these first steps towards a principled and strategic decision about the future of the fund.”
- For disabled people and family carers who appreciate plain language and being told what’s what, Henwood and Hudson mean they were recommending the ILF should be closed all along.
We trust Esther McVey MP and/or Maria Miller MP or a senior civil servant from the DWP will correct DPAC if any of the assertions above are factually incorrect.