May 012014

Save the Independent Living Fund
“Nursing Homes Stink, They’re Worse than You Think.
We’d Rather Go to Jail Than Die in a Nursing Home”

jailnursing home ilf

Join us to protest against the closure of ILF on Monday, May 12th 3pm-5pm outside DWP head quarters, Caxton House, Tothill Street, SW1H 9WA.

Nearest accessible tube –Westminster.

Click for Face Book Event Page

Bring things to make lots of noise. We have asked Mike Penning Minister for disabled people to join us but in case he doesn’t we need to make sure he knows we’re there.
Dear Mike Penning,
We understand that you have stated publicly that you feel closure of the Independent Living Fund (ILF) will not have any adverse effect on the ability of disabled people to live independently in the community, to be able to access education or to continue to be employed.

Disabled people who are ILF recipients do not agree with your view and are gathering to voice their fears for their futures on May 12th from 3-5pm outside Caxton House.

They would very much appreciate the opportunity to speak to you about their very valid concerns so although we know you must be a very busy person we hope you can join us to hear what disabled people are saying.

In the meantime we are attaching a small selection of case studies for your attention.

On behalf of DPAC ILF recipient support group
What is the Independent Living Fund?
The Independent Living Fund (ILF) is a ring-fenced pot of funding to provide funding to help 18,000 disabled people with high support needs live an independent life in the community rather than in residential care.

Closure of ILF: In March 2014 government decided to close the ILF in June 2015 in spite of a court ruling that said their previous decision to close ILF was in breach of the Equality Act. As usual DWP blatantly ignored the court.

Recommendations: Deaf and disabled people’s organisations and disabled people believe the ILF should be kept open and re-opened to new applicants for two key reasons:
– The ILF is a cost effective model of funding that successfully supports the independent living of those with the highest support needs.
– In stark contrast many Local Authorities only provide funding for basic a clean and feed model of care which ends independent living and inclusion in the community. This will leave many ILF users with a choice between inadequate care at home or an inactive, isolated life in a residential home.






Oct 032012

1. The issue of how we support and enable citizens with independent living /social care needs is one of the key domestic issues of the 21 century. As such we call on all political parties to give this issue the attention and urgency it deserves.

 2. The aims, outcomes and actions detailed in the ‘Improving life chances for disabled people[1]’ and the ‘Independent living strategy[2]’ remain the best way of achieving equality for disabled people. As such we call on all political parties to re-iterate their agreement and obligations under these strategies, in particular:

a)To achieving full equality for disabled people by 2025

b)Each locality to have a user led organisation modelled on Centres for Independent Living.

c)Supporting independent living work towards a new approach that delivers support, equipment and/or adaptations according to need.

d)More coherent and explicit standards to be developed bringing legislation and other rights into a coherent framework for improving the life chances of disabled people.

e)The need to identify the benefits of delivering Independent Living to wider society including the economic case for investment in Independent Living support.

 3.Adequate funding, from general taxation and national insurance contributions should be allocated and ring fenced for independent living / social care support. This funding must be recognised as key to upholding the rights of disabled peoples’ inclusion. Support for disabled people should be free at the point of delivery.

4.DPAC completely oppose the abolition of the Independent Living Fund (ILF). The ILF should be developed to become a national, strategic centre of excellence for independent living based on the needs, interests and human rights of disabled people. The Centre would deliver independent living support to disabled people of all ages and all impairments and be co-produced with ILF users,  disabled people and their organisations 

5.   The ILF model helps the government meet its obligations to uphold disabled people’s rights under UNCRDP especially the obligations under article 19[3].

6.   The ILF works! It has a proven track record in delivering independent living support at a cost far lower than that of Local Authorities (2% overhead costs[4] compared to 16% for Local Authorities)

 7.DPAC calls for this current flawed and inaccessible consultation on the ILF to be halted and the government instead to set up an independent ILF task force made of ILF users, ILF themselves with significant representation from disabled peoples organisations. The task force must be operated independently of the ODI, DWP with a resourced remit to carry out needs led review of ILF within the wider framework of independent living and social care support.

 8.DPAC will only support changes to the current system which benefit disabled people’s right to live independently such as changes to the ILF trust dead, extension of ILF to new applicants, and the removal of charging for support from the Extension Fund. DPAC will continue to highlight the negative aspects of DILNOT recommendations.


Supporting independent living and value for money

 9.The £250 million currently spent on supporting 20,000 disabled people with the highest support needs is just 0.004% of GDP[5]. (This equates to an average per person of £241.00 per week or £35 per day).  This funding should be viewed with pride as both an indicator of the success of the ILF but also as an investment that:


a)   enables disabled people with the highest support needs to have real choice and control over their lives and in doing so contribute to, and take part in, society.

b)   is key to disabled people maintaining independence, social networks, health and well-being. Without this funding disabled people’s needs will escalate resulting in higher cost crisis health and residential interventions ‘further down the line’

c)   creates jobs – there are many thousands of personal assistance jobs created by the ILF

10. DPAC opposes the abolition of the ILF and the transfer of its functions to L.A’s on the following grounds:

11. The ILF is a proven and cost effective mechanism for providing support to disabled people with the highest support needs. It has running and overheads costs of just 2%[6] compared to 16% for L.A. social care services.

12. ILF has many of the characteristics of an excellent          independent living support service that L.A’s lack including:

a)   a needs- led independent approach to support unlike L.A’s social care services which increasingly operate first and foremost as gate keeping systems that ration and limit access to social care

b)   an in-depth expertise on independent living issues particularly in relation to supporting disabled people with high support needs

c)   a key aim of providing monies for personal assistants to enable independent living and the full inclusion of disabled people with the highest support needs

d)   portability of support packages – enabling disabled people to move easily like non disabled people without fear of losing support

e)   minimum overheads and bureaucracy that is valued by disabled people using the ILF users which results in running/overhead costs of just 3%

f)    a national eligibility criteria that is the basis for a consistent and equitable service.

The potential impact of the transfer of ILF functions to Local Authorities:

13. There is evidence to show  that without additional or replacement ring fenced funding to maintain ILF support packages the impact on mainstream LA social care funding will mean: 

a)   L.A’s will have little choice but to limit social care support to those with critical needs thereby denying the vast majority of disabled people the support they need to maintain decent, healthy and active lives.

 b)   Local Authorities are increasingly focussed upon essential basic care, not upon full independent living for their service users. Care is, often confined to meeting only critical needs, other than when engaged in a joint package with the ILF. So for disabled people with high support needs , ring fenced funding, external leverage and a dedicated programme are needed, which is impossible to operate within Local Authorities. 

14. The vast majority of disabled people who get ILF support are likely to see their support packages dramatically cut on transfer to the L.A resulting in less choice and control than they currently experience.

15. It will also mean an increase in non-voluntarily moves to residential care with all the attendant risks of abuse, neglect and removal of rights that this entails. Many disabled people will then be at further risk as they attempt to remain at home with inadequate support.

The reasons cited by the government for transferring ILF functions to LA’s simply do not stand up to scrutiny

16. The transformation of L.A social care into a system of    personalised support cited by the government as a key    justification for transferring functions to L.A’s is simply not the        experience of disabled people accessing or trying to access    L.A social care support.

 17. Our experience backed up by research shows a very     different picture:

a)   L.A social care services are increasingly operating first and foremost as gate keeping systems that seek at all stages to ration and limit access to social care. This is further exacerbated by the postcode lottery.

b)   access to social care is increasingly only given to meet very basic personal care needs and these needs are met by increasingly prescribed and rationed services, for example the now notorious 15 minute ‘home care’ visits, that are removing all choice and control from disabled people.  

c)   that the aims and outcomes envisaged by the development and piloting of personal budgets have simply not been achieved . Around 47%[7] of disabled and older people are still without a personal budget and while numbers recorded by LAs to be on personal budgets grows, numbers in receipt of Direct Payments has stalled[8]. The freedoms envisaged by personal budgets have not materialised. L.A’s have in the main retained the control (and the 16% overhead costs) that were meant to be transferred to the disabled person. 

d)   The investment in local user led disabled people’s organisations (DPOs) which were seen as a key mechanism for delivering personalised support, has not taken place. Funding for DPOs and independent Direct Payment and personal budget support has been disproportionately cut. Research by Inclusion London in 2011 found that 1 in 5 DDPOs in London expected to close by end of 2013.[9] 

e)   Current government proposals are completely unacceptable. Without  any replacement or additional funding to maintain the support packages of disabled people currently supported by the ILF the vast majority of ILF users will be stripped of their basic rights, independence, quality of life and dignity,  forced to either go into residential care or go without essential support . This spectre is causing untold stress and anxiety to ILF users.

 f)DPAC condemns the failure of this government to commit or   explain in the current consultation how it intends to secure to  fund the cost of ILF support packages after the planned    closure of ILF in April 2015.

 DPAC calls for the continuation and expansion of the ILF

 19.The State must act to ensure that disabled people with   complex and high support needs are supported to live         independent lives.

 20. The ILF could provide much needed independent living  expertise to disabled people and social care practitioners as  well as national criteria to improve consistency of take up of   independent living support.

 21.The ILF should be expanded into a model for a national,         strategic centre of excellence for independent living based on the needs, interests and human rights of disabled people          and delivering independent living support to disabled people          of all ages and all impairments.

 22. Disabled people must be involved from the start in          developing this national centre of independent living. The    new model must retain the successful and much valued          aspects of the ILF including:

a)   enable geographical mobility through ‘portability’ of care packages (particularly important for taking up education, training and employment opportunities);

b)   attract committed funds from local authorities;

c)   be effectively delivered with minimal overheads and duplication;

d)   be innovative, exemplary and incentivise best practice;

e)   provide on-going and flexible support to users in a way which builds confidence in independent living;

f)    combines national consistency with support for local innovation.

 23. Extend eligibility to ILF to include:

a)   Disabled people not in employment for 16 hours or more per week

b)   Older people

c)   Residents of long-stay hospitals and campus accommodation and former residents living in the community

d)   People with very high support needs through removal of the joint ceiling cap

e)   Disabled people beyond only those in receipt of higher rate car component of Disability Living Allowance

f)    Disabled people in parenting roles where local authority support should be considered as eligible expenditure

g)   Removal of the requirement to take a partner’s benefits and capital into account in assessing an ILF recipient’s means

h)   Targeted work to increase take up by disabled people from Black and Minority Ethnic groups

i)     Disregard of a Disabled Students Grant and any student loan in calculating an ILF award

j)     Taking account of the costs which disabled parents face if their children are in further or higher education, and assessment of capital should make adequate disregard of savings for this purpose.

k)   Disabled people with a terminal illness and a life expectancy of less than six months

l)     Disregard of occupational pensions from financial assessment for the ILF

m) Bringing capital limits on savings into alignment with those of LAs

n)  ILF users who become eligible for NHS continuing care









[5]Based on World Bank figure for 2011 UK GDP of 1,495,567,800,000.


[7] Figures at March 2012 from ADASS



with thanks to all contributors