DWP

D-Day #SaveWILG

I have just been sent this letter by a trusted comrade that dates back to 2011 and the fight to save the Independent Living Fund from closure. To see this letter on it’s original web page, please click here.

Not only does this letter prove the depth of struggle that disabled people have been facing since the coalition Government came into place but it also entered my inbox on a fateful day that will soon see a new First Minister being unveiled in Cardiff.

I am really hoping that my preferred candidate is successful and that I can work with them over the coming months to #SaveWILG. Something needs to happen so I don’t have to experience nights like last night when I woke up at 02.30 in the morning and found myself without access to my bed remote to use the profiling feature that allows me to sit up straight and use the urinal.

Without going into too much detail, an accident occurred and I had no one else to call but my 68-year-old Father who is not able to assist me in the way that he could a few years ago.

The solution is obvious to you and me. I will carry on fighting for justice – for myself and all other disabled people with high support needs across Wales whoever is are new First Minister.

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Maria Miller MP
Parliamentary Under Secretary of State and Minister for Disabled People
Department for Work and Pensions
1st Floor
Caxton House
Tothill Street
London
SW1H 9NA

Dear Maria Miller,

Re: Shutting down the Independent Living Fund

It is only a few short days since I last wrote to you, as Minister for Disabled People, urging you to recall the Public Consultation on Disability Living Allowance (DLA) reform. I find myself writing again with regards to the Independent Living Fund (ILF), which appears to be the Coalition Government’s latest target in its war on disabled people.

You released a statement yesterday which announced that ILF would cease to exist in 2015. Many in the disabled community saw this coming, after the Fund was frozen to new applications for this year, but had hoped that you would see reason. Your statement is difficult to criticize fully because there is so little information on your plans except for vague promises of consultation in 2011. This lack of clarity has sent ILF claimants, their carers and their friends into panic. How is it possible for us to correspond with you when you fail to clarify your intentions?

In the statement you claim that “the model of the ILF as an independent discretionary trust delivering social care is financially unsustainable.” There appears to be no justification of this claim. The purpose of the ILF was to maintain and allow for people with high care needs to remain living independently in the community rather than the alternative of residential care. Given the expense of residential care, surely making it possible for 21,000 people to live independently is financially sustainable and eminently sensible.

The statement suggests that you will move “existing users of the ILF in to a social care system based on the principles of personalised budgets.” This means that the financial burden of care for those supported by the ILF will be foisted upon local authorities, who will set their own eligibility criteria and perform their own assessments of care needs. Levels of care provided will then decrease dramatically for those formerly supported by the ILF, and for those who would have applied for ILF in the past. This will mean that many will no longer be able to live independently and have to enter residential care, at far greater cost to the state. For others it will mean that living independently is no longer possible, with the families of these people having to meet their care needs.

The Ministerial Statement is difficult to critique further because of the lack of detail. It is fair that you should issue an immediate statement providing this detail. I also demand to see the DWP’s reasoning for the claim that ILF is “financially unsustainable”, and all documentation on which this claim was based. It appears that the Coalition Government have decided to make these changes without knowing what system will replace ILF, thus making decisions which affect 21,000 lives without due care and proper planning. I wish to receive an answer that confirms or denies this. If you confirm that ILF was shut down without firm plans for the future, I suggest that you issue a personal statement apologizing to the ILF caseload for causing doubt and panic amongst them. If you deny that no plans were made, I demand a copy of this documentation be published on the DWP website.

I am sure that DWP have completed an Impact Assessment an an Equality Impact Assessment with regards to this decision, and I request that both are made available to the public. I expect a prompt and detailed reply. A copy is being sent to the Secretary of State and to my constituency MP, Hywel Williams.

Yours sincerely,

Rhydian Fôn James

Disability Labour Press Release #BoycottPurpleTuesday

PRESS RELEASE

Purple Tuesday

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Disability Labour deplores the concept of Purple Tuesday. This event, which is being held on Tuesday 13th November is an initiative endorsed by the DWP and run by a company called We are Purple to build a “partnership” between disabled people and businesses.

Fran Springfield Co-Chair of Disability Labour said;

“This is a disgraceful attempt to “sell out” disabled people to commercial entities. Every day should be an accessible shopping day!

Disability Labour are deeply concerned that the DWP which harasses and persecutes disabled people on a daily basis will use video footage to identify if claimants are shopping, what they’re purchasing and even how far they are walking.”

We are dismayed that supermarkets such as Sainsbury’s, Argos, M&S, and shopping centres as well as Barclays Bank have chosen to become involved in such a day.

Disability Labour will be contacting them to express our views and to encourage them not to participate in any similar schemes by We are Purple.

As Kathy Bole, Co-Vice Chair of Disability said;

“Sainsbury’s already has form in relation to sharing CCTV footage to spy on disabled benefit claimants. Their surveillance of disabled people has led to increased distress and isolation.”

[https://www.thecanary.co/trending/2018/05/29/the-dwp-has-been-colluding-with- sainsburys-to-spy-on-disabled-people]

Disability Labour calls on Labour Party members to boycott all the shops, businesses and banks taking part on 13th November, the day of Purple Tuesday.

Disability Labour also calls on DPAC to support this boycott and to campaign with us against the dodgy principles behind Purple Tuesday.

Disabled Access Day on 16th March 2019 would be a far more appropriate day for businesses to support and engage with disabled people.

ENDS

Closure of the Welsh Independent Living Grant: In the cause of equality of provision for disabled people? #SaveWILG

The following article was written by Ann James and Luke Clements. It appears on their superbly informative website which can be viewed here.

We would like to thank Ann and Luke for their research and work in putting together such a comprehensive report.

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Local authorities in Wales are rushing to meet the new September deadline, set by the
Minister for Health, for the re-assessment of the 1,300 or more recipients of the Welsh
Independent Living Grant (WILG). In November 2016 the Welsh Government (following in the footsteps of the English Government) announced the closure of the WILG.

The transfer of care and support of all recipients to local authority provision has been
contentious and has left many recipients anxious and fearful that their right to Independent Living will be eroded by this decision. A strident campaign has been launched by recipients of the WILG (and the previous Independent Living Fund (ILF)) and their families and supporters under the campaign banner of #SWILG.

Closure of the Wales Independent Living Grant

The Independent Living Fund (ILF) was established by the Department of Health and
Social Security in 1988 as an independent trust to provide a weekly payment to a
small number of severely disabled people who would have suffered very significant
financial loss as a result of the abolition of supplementary benefits ‘additional
requirements’ payments in that year.4 It is however thought that about one million
disabled people experienced considerable losses as a result of the 1988 changes.

The ILF existed in various forms until it was closed by the Department for Works and
Pensions to new applications in December 2010,  at which time it was providing support
to 46,000 people with complex needs to live in the in the community.7 At that time the UK
Government argued that it was an unsustainable cost; that it perpetuated an unfair funding of services to disabled people; that distribution of ILF was inconsistent across the four nations and within the four nations; and that the advent of direct payments and individual budgets in England obviated the need for ILF.8 The ILF closed in June 2015 and the funding was devolved to English local authorities and the Scottish, Welsh and Northern Irish Governments

The WILG was set up in 2015 following a consultation exercise and gave the Welsh
Government a period of moratorium to decide on how to proceed
.
The options before the Minister were:

• the extension of current arrangements;
• an arrangement with a third party to continue to provide payments to recipients in
Wales, and;
• to transfer the responsibility and funding to local authorities in Wales over a two-year
transitional period so as to eventually provide support through nIn November 2016, it was announced that the WILG would close in March 2019 and that all recipients would be assessed by their Local Authority for care and support under the Social Services and Well-being (Wales) Act (SSWBA) 2014 by March 2018. The March deadline was extended to–September 2018 to enable local authorities to complete their assessments of WILG recipients.

The #SaveWILG campaigning group led by Nathan Davies continue to fight a vigorous campaign to persuade Welsh Government to retain the WILG and grow the provision in a similar fashion to Scotland.

The Equality Impact Assessment (EIA) carried out in advance of the closure decision in Wales conveys a Panglossian view, that is to say an overly optimistic view of what the 2014 Act will deliver following the closure of the WILG in 2019.  It also fails to acknowledge and consider the potential adverse effect on individuals who may have significant changes to provision and how this will be addressed to ensure the recipients right to Independent Living.

The rational for the closure of the WILG is in keeping with the UK Government’s arguments for the closure of the ILF. Welsh Government argues that:

  • the continuation of the WILG will perpetuate a ‘two tier’ system of provision and that this is unfair on those who receive care and support solely through their local authority.
  • the cost of maintaining a Welsh version of the Independent Living Fund is financially unsustainable as money devolved to Wales from the UK Government’s closure does not have the capacity to respond to future need of recipients nor allow for the opening of the WILG to new applicants.
  • the SSWBA 2014 and Direct Payment provision will enable and support independent living and that the need for a discrete fund is not required.

 

Transition from the WILG to local authority provision: are there messages from England?

The analysis and studies of the impact of the closure on ILF in England are bound to give concern to WILG recipients in Wales. The Shakespeare and Porter 2016 study, which focused on the impact of the transition from ILF to local authority support, found high levels of concern and anxiety about Local Authority processes and provision during this period. The Department of Work and Pensions Post-Closure Review,found both positive and negative experiences of the transition. Those who had retained their provision or had an increase in provision or a slight reduction reported satisfaction without any loss to their independence. For those who had experienced a significant reduction there was a loss of independence, greater restrictions to their independence and an increased reliance on unpaid carers. There was also a concomitant impact on the emotional and physical health of these participants.

An emerging theme from the research and reviews is the post-code lottery faced by previous recipients of ILF. The finding in Inclusion London’s  review confirmed this factor and found in addition inconsistent practice in relation to NHS Continuing Health Care (NHS CHC) referrals for funding and failings in the implementation of the Care Act 2014 which left services users without essential provision.

Many disabled people who will be transiting from the WILG will be legally eligible for NHS CHC funding or at least NHS joint funding. In addition to the well-documented procedural hurdles they encounter in obtaining this support, in Wales a more troubling challenge exists.  The Welsh Government has made it clear that it will not permit direct payments to be made for people eligible for NHS CHC (unlike in England such payments can be made.  Many LHBs appear reluctant to facilitate direct payments via a trust arrangement (often referred to as an Independent User Trust (IUT)) even though the High Court has held this to be lawful (indeed necessary in certain situations).

Anecdotally it is also reported that LHBs are placing obstacles in direct payments being made where there is a joint funding arrangement even though the Framework guidance makes it clear that where ‘an individual has existing Direct Payment arrangements, these should continue wherever and for as long as possible within a tailored joint package of care’.

 

Concluding Comments

About 1,300 people will transfer from the WILG to local authority care and support under the SSWBA 2014 by March 2019. Many of the recipients and their carers are concerned that their right to Independent Living will be compromised as local authorities re-assess and establish their eligibility to services.

The R (CWR) v Flintshire County Council (2018) Case Note illustrates the challenges that a disabled person and his/her family can face in Wales as they seek to access care and support. This case note does however, highlight the statutory requirements for a comprehensive assessment of disabled people in need of care and support and their carers. It demonstrates too, that assessments undertaken in a cavalier manner can be challenged and local authorities held accountable for their assessment, determination of eligibility and care provision. This may provide some reassurance to WILG recipients although it is perhaps questionable how many will have the energy, knowledge and courage to pursue this option.

While the term ‘well-being’ may be used in a perfunctory manner in discussion about social care, the definition in section 2 SSWBA 2014 is comprehensive and includes control over day to day life (s.2(4) (a)) and participation in work (s.2(4)(b)).

Clements notes that section 6(3)(b) stresses ‘the importance of promoting the adult’s independence where possible’ and argues that this is amplified and bolstered by para 56 of the Part 2 Code of Practice (General Function) which states that the well-being duty ‘includes key aspects of independent living as expressed in the UN Convention on the Rights of Disabled People in particular Article 19 which recognizes the right of disabled people to ‘full inclusion and participation in the community’; to choose where they live and with whom they live; and to have access to a range of community support services ‘to support living and inclusion in the community, and to prevent isolation or segregation from the community’. Assessment, eligibility determinations and decisions on how to meet need will need to be infused by these principles.

R (JF) v. Merton LBC highlighted the requirement for an assessment to have regard to the dimensions of well-being set out in stature.

A comprehensive overview of assessment, eligibility and meeting needs can be found at www.lukeclements.co.uk/wp-content/uploads/2017/11/Wales-SS-Well-being-Act-26.pdf page 9.

This ‘post’, written by Ann James and Luke Clements, appears in Rhydian: Wales Social Welfare Law on-line (2018) 23-26: to access this click here.

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Evidence From England #SaveWILG

The following article was published in September 2016 by our friends at Inclusion London and  seeks to evidence the impact of the Independent Living Fund closure with a focus on the situation in London.

This is clearly a VERY IMPORTANT REPORT FOR ALL ASSEMBLY MEMBERS TO READ IN FULL as the Welsh Government intend to close the Welsh Independent Living Grant (WILG) despite clear evidence of flaws during the transition period that the Minister for Children, Older People and Social Care constantly tries to hide behind.

WHAT USE IS A TRANSITION PERIOD IF OVERWHELMING EVIDENCE AND A DEMOCRATIC VOTE IS NOT ENOUGH FOR A GOVERNMENTAL RE-THINK?

Beneath the Inclusion London article, I have added a link to a PDF report written by the DWP reporting on the effects of the closure of the ILF. This is also essential reading for all Assembly Members.

As our elected Assembly Members you have the opportunity to make a telling intervention in the lives  of disabled people with high care and support needs. You cannot let this opportunity slip through your fingers as the potential of this group of people deserves to be tapped into as we can all make a difference to the communities in which we live.

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One year on: Evaluating the impact of the closure of the Independent Living Fund

This report seeks to evidence the impact of the closure with a focus on the situation in London.

The Independent Living Fund (ILF) was shut permanently on 30 June 2015. One week before, wheelchair users tried to storm the House of Commons chamber during Prime Minister’s Question time in a last ditch attempt to prevent closure. Disabled people receiving support through the ILF who are all too familiar with the day to day realities of the mainstream care and support system, were concerned that closing the ILF would mean a removal of essential support.

This report seeks to evidence the impact of the closure with a focus on the situation in London. It brings together statistical analysis from Freedom Of Information (FOI) requests sent to all 33 London boroughs with findings from a survey sent out to London Deaf and Disabled People’s Organisations (DDPOs) as well as qualitative evidence provided by former ILF recipients concerning their experiences of transfer to Local Authority (LA) support.

Comparison of evidence gathered through comparison of the Freedom Of Information (FOI) responses, Deaf and Disabled People’s Organisations (DDPO) survey, and examples of lived experience submitted by former ILF recipients has led to a number of themes emerging:

  • Post-code lottery for former ILF recipients across Local Authorities.
  • The detrimental impacts of the ILF closure on former ILF recipients, ranging from distress and anxiety to removal of essential daily support.
  • The lack of consistent practice across different Local Authorities regarding referrals for CHC funding.
  • Limitations of the mainstream care and support system and failings in the implementation of the Care Act.
  • The value of the model of support provided by the Independent Living Fund.
  • The importance of Deaf and Disabled People’s Organisations for making Deaf and Disabled people aware of and supported to exercise their rights.

There is an urgent need for a radical rethink of how Disabled people are supported to live independently. Disabled people who use independent living support must be at the forefront of developing ideas and with adequate resources for meaningful engagement.

This also needs to happen quickly, before the memories of what effective independent living support looks like and how much Disabled people can contribute when our support needs are met fade into the distance.

Download the full report below including the Executive Summary and Easy Read version 

Watch the video of the meeting. 

Watch the video at: http://bambuser.com/v/6445226?v=m 

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More essential reading from the DWP:

Report by the DWP: independent-living-fund-post-closure-review