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.
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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
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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.

 

 

 

 

 

Sep 172013
 

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: https://dpac.uk.net/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 https://dpac.uk.net/independent-living-fund/

 As many of you know the Mental Health Resistance Network are appealing against the DWP that the WCA is detrimental to those with mental health issues. DPAC wants to be there to support them.  The appeal will be heard on Monday 21st October to Tuesday 22nd October 2013. The vigil will happen outside the royal courts of justice on Monday 21st October at 12 noon until 2 pm.

The WCA is detrimental to everyone, but the obvious added stress, anxiety and lack of Atos professionalism in gaining supporting evidence is particularly severe for those with mental health issues. This system is breaking and we must keep up the pressure for the inhumane WCA to be scrapped completely, as DPAC has always argued.

 Keep checking the DPAC web or twitter for updates

Apr 242013
 

R (Bracking) and Others v Secretary of State for the Department of Work and Pensions

The legal challenge to the Government decision to close the Independent Living Fund

 

This claim for judicial review was brought by five disabled claimants to challenge the decision of the DWP to close the Independent Living Fund in 2015. The fund has been in existence since 1988 and provides grants to severely disabled people to enable them to live independently.  The ILF enables disabled people to control the way they use the funds and currently provides support to almost 20,000 of the most severely disabled adults in the country. Many ILF users receive some support from local authorities to help with their basic care needs but also receive funding from the ILF that enables them to live more independently.  Some only receive funding from the ILF.

 

In 2010 the fund was temporarily closed to new users and in December 2010, without any consultation, the Government announced that the fund would remain permanently closed to new applicants. It also announced that it would carry out a formal consultation on the future of the ILF in 2012.

 

The consultation ran from July to October 2012. This claim was started before the consultation ended. The Claimants argued that the consultation itself was unlawful. The main reasons were: (1) that the consultation paper did not give enough information for people to be able to comment fully; and (2) that the DWP had not properly assessed the impact of closure on those disabled people who were currently receiving ILF support.

 

The consultation paper proposed that ILF funds would be ‘devolved’ to local authorities after 2015 so that the people currently receiving ILF support would, in future, be assessed and supported by social services departments and only receive funding for care from them.  However, it did not say how much funding would be ‘devolved’ or if the funding would be ring-fenced (to ensure that it was spent on supporting adults with care needs).  Further, it did not give enough information about the way social services assess and support disabled people.

 

The DWP also said that it could not assess the impact on disabled people until after the consultation had ended.  It said that it would publish a full impact assessment when it made its final decision.  The Claimants argued that this was unlawful and that the DWP had enough information to carry out a broad assessment of the impact and to set this out at the beginning of the consultation.

 

Under the Equality Act 2010 public bodies, including government departments, must have “due regard” to certain equality principles when it makes decisions and develops policies. This is the “public sector equality duty” and it applies when decisions and policies are likely to affect a group of people with a protected characteristic.  Disability is a protected characteristic.   Under this duty, public bodies

 

must have due regard to the need to advance equality of opportunity for disabled people. This duty has three elements: the need to remove or minimize disadvantages suffered by disabled people, the need to take steps to meet their special needs and the need to encourage disabled people to participate in public life.

 

Because of how important the ILF has been in the lives of those it has supported, and particularly the way it has enabled severely disabled adults to live independent lives and to undertake education and training, to work and to play a full part in their communities, the Claimants argued that there was a very strong duty on the DWP to take steps to find out how the proposal would affect ILF users and other disabled people. The Claimants’ case was that the DWP had acted unlawfully in failing to do this.

 

After the claim had been issued the Government announced, in December 2012, that it had decided to close the fund.  It also made clear that whatever funding may be ‘devolved’ to local authorities would not be ring-fenced.1 The claim was therefore amended to challenge not only the consultation process but also the decision to close the fund. The challenge was still focused on the process of the decision- making: the failure to consult lawfully and the breach of the public sector equality duty when making the final decision.

 

During the proceedings, the Claimants discovered a number of things that had not been made clear in the consultation:

 

  • other options, such as postponing closure until after 2015 had been considered;

 

  • the DWP had estimated the costs of closure at £39 million;

 

  • that one, central, reason for recommending the closure of the ILF was that the money currently spent by the ILF on the support packages for its users would be unlikely to be available to the DWP after 2015.

 

So, although the DWP had presented the decision as being purely about reform and streamlining the way funding was to be distributed, in reality, this was about cutting the funds available to support disabled people. The Claimants argued that this should have been made clear in the consultation.

 

The Equalities and Human Rights Commission intervened in the case to advise the court on how the public sector equality duty should have been discharged by the

 

 

1 In the Government’s published response to the consultation it was stated that “in their response to the consultation, most local authorities said they would be strongly opposed to a ring fence around this funding” but this was completely untrue. Not one of the local authority responses obtained by the Claimants under the Freedom of Information Act expressed opposition to ring fencing; 33 out of 80 were in favour of ring-fencing or suggested it should be considered and several authorities expressing qualified support indicated that their position depended on whether the funding would be ring fenced. The rest made no comment about ring fencing.

 

DWP.  In their submissions, it was pointed out that the public sector equality duty is part of how the Government meets its international obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

 

The judge heard argument for one and a half days and decided that the DWP had carried out an adequate consultation and had not breached the public sector equality duty: he dismissed the claim.  A written copy of the judgment is available on the websites of the solicitors instructed: Deighton Pierce Glynn at www.deightonpierceglynn.co.uk and Scott-Moncrieff & Associates at www.scomo.com.

 

The judgment fails to explain the judge’s reasons for reaching the conclusions he did or to set out the evidence he relied on to reach those conclusions.  The judgment is therefore hard to follow.  In relation to the consultation process, the judge specifically found that there was enough information for people to engage in the process in a meaningful way.  He also decided that the information that had not been provided (about the costs and reasons for closing the ILF) did not make a significant enough difference to the consultation exercise to make it unlawful, though these would have been important issues for people to comment on.

 

In relation to the public sector equality duty, the judge decided that this had been brought to the attention of the Minister for Disabled People and therefore the duty had been met. He referred to a number of documents and information available at the time the Minister was making the decision.  However, none of these explained the duty properly or gave the Minister enough information to consider the specific elements of the duty set out above.

The Claimants are therefore seeking permission to appeal to the Court of Appeal. The Claimants are not just seeking to preserve the ILF for the existing users but want

the ILF to continue and for all young disabled adults to be able to apply so that they

can be supported to live independent lives.  It is with this goal in mind that they wish to pursue their legal challenge further: to ask the Court of Appeal to quash the decision that the ILF should close and to force the Government to think again about how it funds care for severely-disabled people so they can maintain their independence throughout their lives.

 

 

 

For further information (solicitors representing the Claimants): Deighton Pierce Glynn (Louise Whitfield)

8 Union Street

London SE1 1SZ                                   Tel:  020 7407 0007

 

Scott-Moncrieff & Associates (Diane Astin/Kate Whittaker) Office 7, 19 Greenwood Place

London NW5 1LB                                Tel: 020 7485 5588/ 07792 700825

Apr 242013
 

The Court of Appeal will be asked to over-turn the decision of the High Court in the judicial review brought by five service-users of the Independent Living Fund (ILF) of the Government’s decision to close ILF in March 2015. In its judgment handed down today, the court held that the consultation process concerning the closure had been lawful and that the DWP had met the public sector equality duty when deciding to go ahead.  All five claimants have begun an appeal against this ruling.

 

ILF provides vital support and funding to some 20,000 severely-disabled people in the UK to enable them to live independent and fulfilling lives.  The closure of the Fund will threaten their right to live with dignity and in many cases, their ability to work. The Claimants, represented by Deighton Pierce Glynn and Scott-Moncrieff & Associates, fear that without ILF funding and support, they may be forced into residential care or may end up unable to leave their homes.

 

The Claimants’ concerns over the consultation process relate to the failure by the DWP to explain the proposals properly: there was insufficient information to enable consultees to respond in a meaningful way. In addition, further information came to light as a result of the claim which revealed the DWP had not been open and candid in its approach to the consultation exercise.  The judge dismissed these points as having no impact on the lawfulness of the consultation exercise.

 

The public sector equality duty required the Minister for Disabled People to have due regard to the need to eliminate discrimination and advance equality of opportunity for disabled people but there was no evidence that she had specifically considered these issues when deciding to close the ILF and the impact this would have on disabled people. In its ruling, the court did not explain how it reached the conclusion that the Minister had met the statutory duty in the specific way required.

 

The Claimants therefore intend to pursue their appeal on the basis that the judge’s conclusions did not reflect the evidence before the court and that the reasons for ruling that the process was lawful were not properly set out. All five are adamant that the process was flawed and that the impact of closure will be devastating for very large numbers of severely-disabled people.  They see it as vital that the decision is quashed and the matter reconsidered on a fair and lawful basis.

 

Contact:

Solicitors representing the Claimants: Deighton Pierce Glynn (Louise Whitfield)

8 Union Street

London SE1 1SZ                                 Tel: 020 7407 0007

 

 

Scott-Moncrieff & Associates (Diane Astin/Kate Whittaker) Office 7, 19 Greenwood Place

London NW5 1LB                              Tel: 020 7485 5588/ 07792 700825

Mar 052013
 

Anne’s ILF story

Anne

Anne

My partner of 20 years left me in 1984. I am ashamed to say that until this time I knew nothing about disability rights let alone Disabled Peoples User Led Organisations. When I informed my social services department they hadn’t a clue as to how they were going to support me.
From 1984 until 1988 was four years of hell, never knowing who was going to get me up in the morning, put me to bed and all the other bits in between. I joined a Local Authority Strategy group with whom I visited a conference in London. It was there I met Jane Campbell who introduced me to the ILF.

To begin with I had only 14 hours ILF funding which in the early days I used to do some social things and join a local DPULO becoming chair after six months. However I was still having home care, districts nurses to put me to bed and a bath nurse once a week except on Bank Holidays when I could miss a bath for three weeks. During this period of my life I was forced into having a hysterectomy because with the limited amount of support I received I was unable to keep myself clean. One evening whilst entertaining two friends the nurse arrived and donned a plastic piny and gloves to undress me. Seemingly cerebral palsy had become contagious, this is when I decided to use some of my precious ILF funding to support me to go to bed.

As the years went on and my impairment grew worse I eventually got 24/7 funding half of which is paid for by the ILF. This package has enabled me to run local, national and European DPULO’s. The latter gave me the opportunity to travel all over Europe supporting people to fight for their rights to independent living. During the 28 years I have been part of many nongovernmental organisations, fed into countless government “think tanks” etc none of which would have been possible without the ILF because Local Authorities will or can only support basic care needs.

When you read my story you may think what a drain I have been on society but let me remind you that I keep six Personal Assistants in work, pay employers National Insurance, contribute both economically and mentally to society, run a web based organisation for disabled people who employ their own PAs, carers or support workers – none of which I could do without the support of ILF.

Mar 042013
 

“We can’t go back 30-odd years” – watch Sophie talking about the Independent Living Fund and her fears for the future in this powerful film by Kate Belgrave: https://www.guardian.co.uk/commentisfree/2013/feb/27/closing-independent-living-fund-disabled-care

 

Roxy’s Story

photo for ilf

I have been fortunate enough to be entitled to the receipt of funding from the ILF for all of my adult life; and have consequently enjoyed a high standard of life thus far. I have multiple disabilities ( including severe physical impairment, severe visual impairment, and Type 1 Diabetes), and the ILF has meant that it has been possible for me to have my support needs met.

 

These considerable care needs mean that I require round-the-clock assistance to do pretty much everything. I need help with washing, dressing, toileting, all aspects of personal care, managing my diabetes, preparing food, eating it, undressing, physiotherapy, moving in bed over night, and those are just my very basic requirements. The extra funding from the ILF means that I can afford to get the support to live a little, rather than just meet these basic needs.

 

Directly because of the support that the ILF has given me, I have been enabled to achieve a high level of education, including a BA and an MA living on campus at university, and I am also now pursuing my second BA with the Open University. The ILF has enabled me to travel abroad and see a bit of the world, and it opens many other social opportunities to me; for example, I love to see live music, and I am keen on visiting the theatre and eating out. I am able to spend time with my family and friends, in my hometown and further afield, and the ILF means that I Have been able to maintain these relationships, because it has meant that I can have assistance with  doing so. The ILF has also made it possible for me to now live independently in my own flat, and I am so glad that I am able to exercise some choice, and am not yet  forced to live in a residential care home.

 

When I think about the ILF closing in 2015, I know that I only have two years left to live. I may exist for a little longer, but I can’t see how I will be able to maintain any quality of life, without the funding to live independently.

 

Despite having multiple disabilities, I am in quite good health; but I know that this will change if the ILF is closed. I am sure that I would have to use agency staff, and I know from experience that they are so badly equipped to help manage medical conditions, that their clients are frequently admitted to hospital. As a diabetic, the only way for me to properly manage my diabetes is with an insulin pump. This requires very frequent blood testing, and specialist training to use, which is not a problem with my direct employees at the moment, but would be impossible with agency staff. I would have to change to another, inadequate, system for attempting to manage my diabetes, as I would be limited to a couple of visits a day from the district nurse to attempt to control my diabetes. This regime will fail to control it, and so I can look forward to a future where I spend a lot of time in hospital. Until they decide that it would save everyone money if I were in residential care.

 

I am usually a sickeningly optimistic person, who can’t help seeing the silver lining to any cloud; but this time I don’t see anything positive in what the government want to do. If they have the capacity for shame, then they ought to feel it and the inhumanity of their proposal.

 

 

Mar 032013
 

Through support from the Independent Living Fund my step son John is able to enjoy a much more independent way of life, than would otherwise be possible. He can at the moment, go out & access his local community and feel part of society and valued as a person. He is a young man of 30 who wants to continue to live at home and have the best possible chance of some Independence in his life. His mother has been able to set up her own small florist’s market business because the support John receives through the ILF means she does not have to support him full time.

 

The support John receives now through the ILF is working for him and for our family.

 

John stays with me now every weekend from 3pm on Friday to 9pm on Monday, which allows Evonne to work the market and to go to the wholesalers too. I also go over several evenings and mornings to bath and shower John. Because of the ILF John gets to do social things he wouldn’t otherwise be able to. John has complex physical and learning support needs and is not able to work but there are many things he loves to do. I take him to a club night every week where he meets like- minded friends for an evening out. He loves to go to the theatre or cinema most weekends and out shopping too. When the weather is suitable we often go out for drives to the seaside which John loves, and also go bowling amongst other social activities. John also likes to take holidays in the UK on holiday sites which have entertainment and wheelchair access caravans. Again the ILF means that I can take him on these and we went away for 3 short breaks last year which he just wouldn’t get to do with a cre package funded solely by the Local Authority.

 

If the ILF were to close completely John would lose almost 50% of his care package: his care package comes to £52,580 per annum in total, of which £23,376 is made up of ILF payments. He has been scored in the highest funding band on the Local Authority’s Resource Allocation System, but their highest indicative budget would only provide care up to a cost of £31,094 for someone living at home. This would mean he could not be looked after at home and would almost certainly need to go into residential care.

 

Local Authorities and social workers are already cracking under the pressure from cuts and increased caseloads. The British Association of Social workers have been reported as having to revise their own code of ethics because of unmanageable caseloads. These are the Local Authorities and social workers that the government say should be responsible for handling even more case management and care packages if the ILF is allowed to close.

 

We know from personal experience that Local Authorities are cutting care packages back as far as they can under budget pressures and how hard you have to fight to keep what you need even with Independent Living funding in place.  The last time we had a review the social workers tried to cut quite a bit from their part of the package and admitted this was due to budget pressures and nothing to do with what John’s actual care needs are. We put up a strong resistance to this. I saw a solicitor for legal advice and let the social workers know I was doing this. We still however felt pressured to accept a small decrease in his sitting service from Crossroads which was reduced from 10 hrs a week to 5. We were told that if we accepted this the review panel would be more likely to agree not to carry out the other reductions they were trying to enforce on us including reducing John’s day centre care from 5 days to 3, his respite care from 42 days to 28, and to stopping his transport to the day centre altogether which we did successfully resist.

 

The closure of the ILF will have a devastating impact on our whole family. We know that the hours of support funded by the ILF will not be maintained by the Local Authority. John’s ILF package consists of 37 hours per week and I am John’s sole Personal Assistant, so as well as John losing a lot of his Independence I too would be losing my employment which will be a big loss to the family. Evonne, John’s mother, would be forced into making a decision as to whether John could stay at home as he wants to or whether he would have to go into residential care. If he stayed at home she would have to pack in her business as there is no way that she would be able to devote the amount of time needed to keep that running if she is forced into a position of having to stay at home looking after John. She often works until the early hours of the morning preparing and making up flower arrangements and is then back in the market by 8am and sometimes earlier. She isn’t getting any younger and the long term stress & fatigue of looking after John has started to take its toll. Things get harder as disabled people and their families get older and it is more not less care & support that is needed.

 

My Step Son of course is far from being alone, the ILF currently helps over 18,000 people with high support needs, both to access work placements in some cases, and in all cases to access support and the community in a way in which they would never be able to if it is allowed to close. It is called the Independent Living fund for a reason, it allows severely disabled people to live more independent lives than they would otherwise be able to do.

 

The Independence and quality of life that John enjoys because of his ILF award will all be taken away if the ILF closes and it will be a total disaster for him, Evonne & myself too. I would like to say the Government don’t realise that this will be a complete disaster for disabled people, their families and carers, but I’m afraid I think they do know this…..they just dont care!!

 

 

 

 

Feb 122012
 

LABELS-save ilf  for download (Word doc for envelope label size L7160)

Monday 13th Feb Come and join us in delivering Maria Miller (Minister of Disabled People) our protest letter opposing the closure of the Independent Living Fund (ILF).

Where: Caxton House, 6-12 Tothill Street, London, SW1H 9DA

 

When: Monday February 13th 2012

 

Time: Assemble: 2pm next to Caxton House

We really need your support to challenge the fact that funding through the fund, for over 20,000 disabled people with significant support needs are at risk.

 

This decision disregards disabled people’s human rights potentially removing us from the community to the care home. We were not even consulted.

 

Bring people, banners and noise! Invite media friends!

 

For further details contact DPAC: mail@dpac.uk.net or call Hammersmith & Fulham Coalition against Community Care Cuts (HAFCAC) on 07899 752877