Northern Ireland

Vital Twitter Thread #SaveWILG

This morning I published a vitally important Tweet thread that I hope will capture the attention of those with the power to provide security to the 1,300 disabled people with high support needs throughout Wales who receive the Welsh Independent Living Grant.

I publish memes and photographs alongside these Tweets. If you want to follow me on Twitter and perhaps Retweet my epic thread, my handle is @nathanleedavies

I am currently extremely busy as we head into a crucial month for the #SaveWILG campaign.

The fight continues…

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The following Tweet thread is VERY IMPORTANT. I trust that ALL Assembly Members and those in the Media with the power to spread awareness of the struggles of disabled people with high support needs will READ THIS in full and take the appropriate action to help us

There can be no denying that the WILG transition process is highlighting some major problems in the social care system throughout Wales. Local authorities cannot be trusted to provide adequate support for disabled people on their own.

The evidence is overwhelming as displayed in the Freedom of Information requests gathered from all 22 LAs, first-hand stories from WILG recipients and clear evidence that the same system is failing people in England.

 The amount of support for #SaveWILG has been incredible. Jeremy Corbyn, John McDonnell, MPs, AMs and celebrities such as Ken Loach have all backed our campaign while Welsh Labour members passed a motion at conference to protect the grant.

 A similar motion was also passed by Disability Labour, our friends in Scotland and Northern Ireland also show that there is clearly another way of doing things to protect those with high support needs.

I haven’t even mentioned the UN report which found ‘grave and systematic violations of disabled ppls human rights’, saying it was a ‘human catastrophe’. This was partly based on concerns at the closure of the ILF. @WelshLabour are moving in the same direction. https://www.independent.co.uk/news/uk/politics/government-spending-cuts-human-catastrophe-un-committee-rights-persons-with-disabilities-disabled-a7911556.html …

 I am receiving emails on a daily basis from WILG recipients across Wales telling me about the difficulties they are facing with the transition process. These people are too afraid to speak out due to the fear of reprisals.

 Other recipients are also in the process of taking their LA’s to court and cannot speak out for fear of compromising their case. WILG will not or cannot raise their voice at all – for many reasons such as cognitive impairment, exhaustion or fear of further cuts to their hours.

 The absurd two-tier argument that Welsh Labour are using is absolutely ridiculous. It is to all intents and purposes an equalisation downward, however subtle and however long it takes to materialise. 

The ‘two-tier’ system is entirely the choice of WAG. Not us or recipients. Again, using this as a reason to stop providing what is needed as a basic starting point, is not a reason!!!

The effect being that money (saving) is at the root of this and the standard of life/living for recipients is not likely to be maintained in a way that allows them to have a really fulsome, fulfilled and rewarding life, rather than merely existing….

 I have spent all day writing this thread of Tweets and have sacrificed three years of my life to this campaign for common justice. I will not stop fighting for the rights of disabled people but it is a disgrace that I have to in 21st Century Wales. 

WALESPOSTCARDFRONT001

 

Disability News Service: Ministers ‘failing to uphold a UN disability convention they do not understand’

The following article was taken from the excellent Disability News Service website, written by John Pring.  This blogger takes no credit for the article below:

***

Government ministers are failing to uphold the rights of disabled people, ignoring the need to engage with disabled people’s organisations, and do not understand the UN’s disability convention, according to a new report.

The highly-critical report has been compiled by disabled people’s organisations (DPOs) across the UK and submitted to the UN’s committee on the rights of persons with disabilities.

It analyses how the UK and devolved governments have responded to key parts of last year’s highly-critical report by the committee on the UK’s progress in implementing the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

The new report includes some criticism of the devolved governments of Scotland and Wales – and raises concerns about the impact of the continuing political impasse over the Northern Ireland Executive – but most of its concerns are directed at the UK government in Westminster.

The UK government, the report says, is responsible for “continuing retrogression and re-institutionalisation” of disabled people and continues to disagree with the UN committee’s findings and recommendations.

It adds: “We have concerns that the UNCRPD is not embedded within government and is poorly understood at all levels, including ministerial.”

It provides the example of international development secretary Penny Mordaunt, who appeared to try to redefine the meaning of inclusive education at the government’s Global Disability Summit in July, telling the international audience that inclusive education meant “that everyone has an education and it is done in a way to reach their full potential”.

The report says that many of the concerns raised by DPOs last year in their evidence to the UN committee remained a “significant problem”, with disabled people still subject to “tightening eligibility” for support, the removal and sanctioning of benefits and the bedroom tax.

It also raises concerns about the continuing rollout of universal credit (UC) and says DPOs are “gravely concerned” at the failure to assess the access needs of disabled people due to be moved onto UC and the lack of the necessary data to monitor its impact.

It warns that the social care funding crisis has led to the removal of further essential independent living support for disabled people and the closure of community services for people with mental distress, while increasing social care charges are leaving thousands of disabled people in debt or choosing to pull out of receiving support completely.

The DPOs also point to the chronic shortage of accessible housing in England, with new housing for disabled people often limited to segregated supported housing complexes.

And the report says that the number of disabled children being forced into special schools is rising, while budget cuts are reducing the quality of inclusive education, and the number of disabled pupils left without any educational placement at all has risen, as has the number of disabled pupils excluded from school.

Among the DPOs that contributed to the report are the Alliance for Inclusive EducationDisability Action (Northern Ireland)Disabled People Against CutsDisability WalesInclusion LondonInclusion Scotland, the Reclaiming Our Futures Alliance and Sisters of Frida.

They make 22 recommendations of their own that are aimed at the UK government, including calling for: a new legal right to independent living; the abolition of charging for social care; an end to the practice of placing disabled children and young people in long-stay hospitals; and a new social security system that is based on “an accurate analysis of need” and is “consistent with a human rights approach to disability”.

There are also four recommendations for the Welsh government – including a call to incorporate the UNCRPD into Welsh law – and six for the Scottish government, including the need for a national strategy on the provision of accessible housing.

The DPOs conclude that examples of “progressive” policy-making have been restricted to the devolved governments of Scotland and Wales, although the two executives are “not without room for improvement” themselves.

There is also repeated criticism in the report of the UK government’s “inadequate engagement” with DPOs and its failure to recognise the importance of consulting disabled people.

The report says that “engagement with non-user-led charities is continuously prioritised over engagement with DPOs”, while requests by DPOs to meet ministers “are frequently turned down”.

It also says that engagement with the UK government is “undermined by an increasing lack of trust”, and warns that “without trust, consultation and engagement cannot take place in ‘good faith’”.

The report does welcome one measure taken by the UK government, the increased funding for disabled facilities grants, although it warns that “delays in processing applications can still be a problem for under-resourced local authorities”.

This week’s report follows the publication of the government’s own progress report last month.

The DPO report is highly critical of the government’s progress report, accusing it of effectively ignoring many of the UN committee’s recommendations.

One of the recommendations ignored, it says, was to carry out a cumulative impact assessment (CIA) of its cuts and reforms on disabled people, with the UK government continuing to insist that this is not possible.

It points out that the Equality and Human Rights Commission (EHRC) published a CIA earlier this year, while the Greater London Assembly is conducting its own CIA for London “using the same methodology as the EHRC”, and both the Scottish and Welsh governments are “exploring carrying out their own”.

There is also frustration at the government’s failure to follow up the UN committee’s recommendation that it should devise a “comprehensive” plan aimed at the “deinstitutionalisation” of disabled people, in “close collaboration” with DPOs.

Progress on Disability Rights in the United Kingdom #SaveWILG

Yesterday, I was alerted to the publication of UK Independent mechanism update report to the UN Committee on the Rights of Persons with Disabilities.

This is a very illuminating document that shows just how far behind the United Kingdom is slipping in terms of Disability Rights. The sections about Independent Living is of particular interest to me and my comrades as it is critical of the current arrangements that we are having to put up with. It provides yet more evidence of the need to save WILG as well as some worrying news that the Welsh Government are rushing through a new framework on Independent Living for disabled people that is bound to be a huge disappointment to those with high care and support needs. Welsh Labour have proved time and again that they do not want to listen to party members, unions, Labour MP’s, supporters from across the political spectrum or some of their own politicians and are determined to stop WILG.

I am doing everything I can but I am not being listened to at all.  I have been robbed of three years of my life and the effect of this campaign has taken a huge toll on my health.

I will carry on the fight until the bitter end because I believe in what I am fighting for and have no confidence in the Welsh Government – as it stands – to produce a suitable alternative.

The fight continues…

*** 

The section on Wales, reads as follows:

Wales –

The EHRC is concerned that disabled people’s right to independent living may be harmed by the Welsh Government’s decision to potentially merge the Supporting People programme with other budget lines from 2020. Concerns have been raised that disabled people’s rights have been negatively affected when equivalent funding programmes elsewhere in the UK have been lost. 

The report goes on to say the following:

Wales

The Welsh Government has prioritised social care in budget allocations to local
authorities since 2010, most recently through a local government settlement to
maintain the assumed Welsh Government share of core spending at 2017/18 levels
until 2020. The Welsh Government also provides funding that supports social care
duties through the Supporting People programme. This support helps people to live
independently in their own home. The programme has been retained for a further
two years as part of the budget for 2018/19. The programme’s future post-2019 is
unclear, with the Welsh Government potentially merging it with nine other budget
lines, with no ring fencing, causing concern for disabled people. A £60 million
integrated care fund has been introduced, which aims to support people to maintain their independence and remain in their own home. However, there has been a real terms reduction in budgets for social care services of over 12% due to increasing need.

The Welsh Government is currently reviewing its Framework for Action on
Independent Living. After a delay, it is anticipated that the new framework, provisionally entitled ‘Action on disability: The right to independent living’, will now be published in autumn 2018. The new framework will be accompanied by an action plan that will set out a range of actions aimed at tackling some of the key barriers identified by disabled people, including in transport, employment and housing, and access to buildings and public spaces.

I am looking forward to seeing what this new framework for action actually entails. I am preparing to be disappointed as  I always am with shambolic Welsh Labour.

***

The full report on the Right to Independent Living can be seen below:

2. The right to live independently in the community (article 19)

CRPD Committee concluding observations 2017, paragraph 45:

‘The Committee recommends that the State party … : recognise the right to living
independently and being included in the community as a subjective right,
recognise the enforce ability of all its elements, and adopt rights-based policies,
regulations and guidelines to ensure implementation; conduct periodic
assessments in close consultation with organisations of persons with disabilities
to address and prevent the negative effects of policy reforms through sufficiently
funded and appropriate strategies in the area of social support and living
independently; … [and] allocate sufficient resources to ensure that support
services are available, accessible, affordable, acceptable, adaptable and are
sensitive to different living conditions for all persons with disabilities in urban and
rural areas.’

Summary of progress

There has been limited progress on the UK governments’ implementation of the
CRPD Committee’s recommendations concerning disabled people’s right to live
independently in the community. Appropriate social care packages and accessible
housing are two of the cornerstones of independent living. There have been some
promising developments in Scotland and Wales in relation to certain funding streams
to support independent living. However, as set out below, there is also evidence that
social care, particularly adult social care, is at crisis point across the UK and there is
a chronic shortage of accessible homes.

Progress on disability rights in the United Kingdom 

Key concerns

UK

The right to live independently in the community is not recognised as a statutory right
in the UK and there do not appear to be any plans to change this.
The increasing demand, along with reduced funding, for social care, particularly adult
social care, may be leading to a regression in disabled people’s article 19 rights to
live independently in the community. The shortage of accessible and adaptable
homes, and long delays in making existing homes accessible, also has a detrimental
effect on the right to live independently.

England

The EHRC is concerned that, in England, the closure of the Independent Living Fund
and the devolution of this function to local authorities, without ring-fencing finance for
this purpose, has resulted in a postcode lottery for support.

Wales

The EHRC is concerned that disabled people’s right to independent living may be
harmed by the Welsh Government’s decision to potentially merge the Supporting
People programme with other budget lines from 2020.
Concerns have been raised that disabled people’s rights have been negatively
affected when equivalent funding programmes elsewhere in the UK have been lost.

Northern Ireland

The Mental Capacity Act (Northern Ireland) 2016, while enacted, continues to have
no clear time frame for its commencement.

In Northern Ireland, the Independent Living Fund is administered by the Independent
Living Fund Scotland, but restricted to existing users leading to its eventual defacto
closure, and with no clear indication of future arrangements.

Scotland

Despite positive policy intentions, significant questions remain regarding the
implementation of Self-directed Support and access to adult social care.

New evidence

Great Britain

The EHRC’s inquiry into housing for disabled people across Great Britain (GB),
published in May 2018, found that disabled people face a shortage of accessible and
adaptable homes and long delays in making existing homes accessible. Disabled
people are not getting the support they need to live independently as the provision of
advice, support and advocacy is patchy, and people report that they have nowhere
to turn when their housing is unsuitable. The EHRC’s survey of local authorities
found that just over a quarter (28%) of local authorities in GB set a percentage target
for accessible housing.

 In England, only 7% of homes offer minimal accessibility features.

 In Scotland, 55% of councils said a lack of funding for adaptations was a
challenge, and only 24% said the data they hold about disabled people’s
housing requirements were ‘good’ or ‘very good’.

 In Wales, only 5% of local authorities have a target in place for accessible
housing, and only 15% said that disabled people’s housing needs are subject
to specific discussion or scrutiny when conducting a local housing market
assessment.

Progress on disability rights in the United Kingdom

England
Spending for adult social care in England was budgeted to be 3% lower in 2017/18
than in 2009/10. As the population has grown over this period, this is equivalent to
9% lower per person, according to the Association of Directors of Adult Social
Services (ADASS). This means ‘fewer older and disabled people with more complex
care and support needs getting less long-term care’.

In March 2018, the EHRC started legal action against 13 clinical commissioning
groups because their NHS Continuing Healthcare policies restricted funding and
failed to account for individual circumstances. This may force disabled people into
residential care when their preference is to remain at home.

Research by the Care Quality Commission (CQC) found that nearly two-thirds of placements in residential-based mental health rehabilitation services are ‘out of area’, and very lengthy. This means that individuals are usually placed far away both from home and from the local support services that should care for them once they have been discharged. The CQC has also reported that some patients who are subject to the Mental Health Act (MHA) 1983 continue to experience care that does not fully protect their rights or ensure their well-being. For example, there have been no improvements in involving patients in developing their care plans, and in making sure their views are considered in care decisions.

Northern Ireland
There is an absence of information on the extent to which disabled people with
substantive needs, who are not existing Independent Living Fund users, are having their needs met through the Self-directed Support and direct payment provisions. Furthermore, direct payments do not fund many of the activities funded by the
Independent Living Fund, leading to less support and control.

Indicator 42 of the draft ‘programme for government’ considers the average life
satisfaction score of disabled people. The Department for Communities has
acknowledged that the comprehensive dis-aggregated data required to support
indicator 42 is lacking. The department has conducted a scoping study to identify
existing data, which recommended that a new Northern Ireland disability survey is
required. The department is exploring options for such a survey, but, due to the
additional resources required to conduct the survey, ministerial approval is required.
With the continued suspension of the Northern Ireland devolved government, it is
currently not possible to obtain the required approval.

Relevant steps taken by UK governments

England

Since 2015, the UK Government has allocated additional funding to local authorities
for adult social care through the adult social care precept, the Better Care Fund
and a commitment to fund an adult social care support grant. However,
stakeholders, including ADASS, conclude that even these recent increases may not
be enough to address the funding crisis in adult social care.

In March 2017, the Conservative Government announced a green paper on social
care in England, and a public consultation. The publication of the green paper, which
will focus on older people, has been delayed until the end of 2018. It is unclear whether it will address issues that are faced by working-age disabled people in
relation to social care, and whether disabled people will be explicitly consulted.

England and Wales

The independent review of the MHA 1983 published its interim report in May 2018,
providing details of the issues the review is examining.These include the rising
rates of people being detained under the act and inappropriate and/or long-term
placement of people with learning disabilities and/or autism in psychiatric hospitals
because community support services are unable to meet their needs. The EHRC
hopes that the review will make recommendations that result in fewer people facing
compulsory detention and more people living independently in places or with people
of their choosing.

Wales

The Welsh Government has prioritised social care in budget allocations to local
authorities since 2010, most recently through a local government settlement to
maintain the assumed Welsh Government share of core spending at 2017/18 levels
until 2020. The Welsh Government also provides funding that supports social care
duties through the Supporting People programme. This support helps people to live
independently in their own home. The programme has been retained for a further
two years as part of the budget for 2018/19. The programme’s future post-2019 is
unclear, with the Welsh Government potentially merging it with nine other budget
lines, with no ring fencing, causing concern for disabled people. A £60 million
integrated care fund has been introduced, which aims to support people to maintain
their independence and remain in their own home. However, there has been a real
terms reduction in budgets for social care services of over 12% due to increasing
need.

The Welsh Government is currently reviewing its Framework for Action on
Independent Living. After a delay, it is anticipated that the new framework provisionally entitled ‘Action on disability: The right to independent living’, will now be
published in autumn 2018. The new framework will be accompanied by an action
plan that will set out a range of actions aimed at tackling some of the key barriers
identified by disabled people, including in transport, employment and housing, and
access to buildings and public spaces.

Northern Ireland

The draft programme for government indicator 42 includes a commitment to
increase take-up of Self-directed Support and direct payments. However, a final plan
has yet to be approved in the absence of a functioning Northern Ireland Executive.
Concerns have been raised that Self-directed Support does not suit everyone, that
too much control is given to the health trusts, and that the support given is not
enough to be used for more than the individual recipient’s basic needs.

In the absence of an approved programme for government, the Northern Ireland
Executive Office has developed a 2018/19 outcomes delivery plan that reflects the
responsibilities placed on departments by the previous NI Assembly and Northern
Ireland Executive, and sets out actions that the departments can take without further
ministerial approval. Outcomes 8 (care and help for those in need) and 9 (a shared,
welcoming and confident society that respects diversity) include a commitment to
improve quality of life for disabled people. The identified actions for fulfilling these
outcomes include ensuring that 8% of new social homes are wheelchair accessible,
introducing opportunities for 200 new NI athletes in the Special Olympics, and
improving understanding of British Sign Language and Irish Sign Language.
Progress will be measured every six months, using a number of indicators set out in
the draft programme for government, including indicator 42. Questions have been
raised in particular regarding the plans for new accessible social homes and whether
an 8% target for new accessible social homes is reflective of demand. It has also
been questioned whether the new accessible social homes will be provided in a way
that addresses the demand in rural and urban areas.

Scotland

The Scottish Government has announced funding for 31 projects delivering direct
and local independent support across 31 local authority areas, through the Support
in the Right Direction 2021 programme. Funding will be provided between October
2018 and March 2021, with the aim of ensuring that more people across Scotland
who require social care are empowered to make choices about their support.

The Scottish Government has confirmed that by 1 April 2019 it will extend free
personal care to all those under the age of 65 who require it, regardless of their
condition.

Letter from David J Rowlands, AM #SaveWILG

Below I have copied a letter from David J Rowlands, AM, Chair of the Petitions Committee. That should be of interest to all WILG recipients and their families. 
 

 8 August 2018 

 

Dear colleague, 

 Petition P-05-771 Reconsider the closure of the Welsh Independent Living Grant and support disabled people to live independently  

The Petitions Committee is considering the following petition, which was received from Nathan Lee Davies having collected 631 signatures: 

 I am a recipient of the Welsh Independent Living Grant (WILG) and a disability activist who intends on asking Welsh Government to reconsider their decision to close WILG as of April 2019.  

The WILG was introduced to help people who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015. More  than 1,500 people are helped by the scheme across Wales. Recipients all  have high degree of care and support needs. 

It was due to run until the end of March 2017, but Social Services Minister Rebecca Evans said in November that funding would continue for another year. 

 The annual £27m fund will then transfer directly to local authorities during 2018-19 so they can meet the support needs of all former ILF recipients by 31 March 2019. 

 Additional information: 

Why we oppose this decision: 

 The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens. But they didn’t want WILG scrapped and the key point is that our advice was not accepted. 

 It should also be remembered that closure of WILG is not inevitable as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF. 

 Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities. 

 This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape? 

 Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision. 

 Welsh Labour will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success – with no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure. 

 Most recently, the Committee held evidence sessions with the petitioner and the Minister for Children, Older People and Social Care. Details of all the evidence received to date can be found here: http://www.senedd.assembly.wales/ieIssueDetails.aspx?IId=19785&Opt=3 

 The Committee has agreed to seek the views of others who may have a perspective on the petition and the decision to close the Welsh Independent Living Grant from March 2019. 

 We would therefore be extremely grateful to receive any views you have in relation to the following issues (or any other matters which you feel are relevant): 

  • The Welsh Government’s decision to transfer funding for the Welsh Independent Living Grant to local authorities. 
  • The potential benefits or problems which may arise from supporting WILG recipients through local authority social care provision in the future. 
  • The current transition process, including assessment by local authorities, and any feedback from WILG recipients. 
  • If you (or your organisation) was involved in the work of the ILF stakeholder advisory group, your experience of this process and the extent to which the group’s deliberations and final recommendation reflected the views of members. 
  • Any alternative approaches that you believe should have been taken by the Welsh Government, or any changes which should be made at this stage. 
  • Any other views or comments that you have in relation to the petition. 

I would be grateful if you could provide any response which you wish to make by e-mail to the clerking team at SeneddPetitions@assembly.walesif possible by Friday 14 September 2018. 

Please feel free to share this letter with others who you feel would have views to share on any of the above. 

Responses are typically published as part of our Committee papers and will be discussed at a future Committee meeting. 

 Yours sincerely 

 David J Rowlands AM Chair 

 

 

Motion for Disability Labour AGM #SaveWILG

This is the motion I am proposing at the Disability Labour AGM on Saturday 8th September in Leeds.

Thanks must go to Keith Sinclair for his amazing work on creating this motion. The strength of the #SaveWILG campaign group never fails to impress me. It is very humbling.

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Disability Labour notes:

  • the support for the Welsh Independent Living Grant (WILG) from recipients and the wider support that exists.

 

  • that a positive approach must include a tripartite team to agree the Care Package, comprising the disabled individual, the local authority and a Social Worker independent of both parties.

 

  • the decision of the Welsh Government to abolish the WILG

 

  • the overwhelming decision of the Wales Labour Party conference to support the saving of the Welsh Independent Living Grant (WILG)

 

  • the different approaches that have been adopted to supporting Independent Living in England, Scotland and Northern Ireland.

 

Disability Labour believes

  • that the approach to Independent Living adopted in England has been a disaster and that the models adopted in Scotland and North Ireland are more likely to meets the needs of disabled people.

 

  • that Constituency Labour Parties (CLPs) and trade unions in Wales should be congratulated for their support for the campaign to save the WILG.

 

  • that the evidence is clear that local authorities in Wales are not in a position to seamlessly take on the responsibilities of the WILG.

Disability Labour calls upon

  • the Welsh Government to save the WILG as a first step towards meeting the needs of disabled people in Wales

 

  • CLPS, unions and Labour affiliates to support the campaign to save the WILG.

 

Proposed by Nathan Lee Davies

Seconded by Dorian Gordon

 

 

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.

*** 

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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We need people power to save the Welsh Independent Living Grant #SaveWILG

ARTICLE TAKEN FROM MORNING STAR

CAMPAIGN OF THE WEEK

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CARE for disabled people who live on their own was jeopardised by the Tories in 2015 when they scrapped the Independent Living Fund (ILF).

The scheme helped people who had both day and night care needs and who were getting the high rate care component of Disability Living Allowance.

In England, the funds were given directly to local authorities, but in Wales, Scotland and Northern Ireland the money was transferred to the devolved governments.

Scotland and Northern Ireland set up their own ILF systems and Wales created the Welsh Independent Living Grant (WILG) as an interim measure while a consultation took place.

In November 2016, the Welsh government announced that it would be closing WILG and giving the money directly to local authorities through the Revenue Support Grant.

Save the Welsh Independent Living Grant’s (SaveWILG) Nathan Lee Davies says it means the money will not be “ring-fenced” and is concerned that councils can spend the money “in whatever way they choose,” meaning disabled people’s needs could be overlooked.

“As a recipient, I do not believe that all the options were seriously considered,” he says.

“Disabled people and their families have been let down by the Welsh government who cannot be allowed to wash their hands of their responsibility to some of the most vulnerable people in our society.

“WILG is a grant that needs improvement, but we are hoping to save it in order to preserve the remnants of the ILF.”

The campaign group, as titled, aims to save the WILG and allow disabled people with high care and support needs to live the lives that they choose with adequate support.

Davies says: “It is important that we keep hold of the triangular system that was so successful during the ILF years when packages of care were designed in between recipients, local authorities and independent organisations.

“The final care package could be only be agreed and finalised when all three parties were in agreement.

“Disabled people cannot afford to depend on cash-cutting local authorities. Once we have ensured the future of WILG our next steps would be to improve it.”

SaveWILG began with a petition and by handing out postcards to members of the public to pose with.

“We managed to get a postcard photo with Ken Loach and comedian Mark Thomas,” says Davies.

“I have been writing letters to the petitions committee at the Welsh Assembly and we recently won a motion at the Welsh Labour conference in Llandudno to save WILG.

Unfortunately, AM Huw Irranca-Davies announced that the Welsh government would not be changing its policy following the conference, which Davies says “ignores the will” of members and unions.

The original motion started off at the Wrexham branch of Unite and soon SaveWILG also won the support of Unison.

“The fact that we won the vote so convincingly suggests that other unions also supported us, despite the Welsh executive committee asking Clwyd South to retract the motion,” Davies says.

Davies is working closely with Welsh Labour Grassroots and receives support from the People’s Assembly and Left Unity.

“It was a great day, but we must guard against complacency and finish the job we have started,” he adds.

“The fact that we managed to meet Jeremy Corbyn at conference and get a photograph of him holding a ‘Where there’s a WILG, there’s a way T-shirt’ was also a highlight.”

The campaign is still ongoing and Davies says that he has learnt that “people power” can really make a difference.

He says: “We have a wealth of future events planned, such as protests and marches, and on June 5 we are going to the Senedd to give evidence to the petitions committee.

“We will continue to put pressure on the Welsh government until there is independent living and disability rights.”