CHC

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