ILF Scotland

Pressure grows to keep disability living grant #SaveWILG

Taken from the Plaid Wrecsam blog with sincere thanks.  

Pressure is mounting on the Welsh Government to maintain an essential grant for disabled people after 20% of AMs backed a statement of opinion.

Plaid Cymru AM Llyr Gruffydd has tabled a Statement of Opinion in the National Assembly calling for the Welsh Independent Living Grant, which allows severely disabled people to continue to live independently, to be retained. The Welsh Government plans to scrap the grant next year, transferring the responsibilities over to Local Authorities.

Nathan Lee Davies, of Wrexham, has been campaigning to keep the grant for several years, and managed to pass a motion of support for maintain the grant at this year’s Welsh Labour Spring Conference.

Llyr Gruffydd, Plaid Cymru’s North Wales AM, said:

“Recipients of the Welsh Independent Living Grant tell me that the system as it is now works well, and they fear that transferring the responsibility over to councils would compromise their independence. Maintaining their independence is paramount. Their dignity and right to independence should be respected.

“Scotland’s Government has maintained its Independent Living Grant and indeed invested in the scheme. It’s widely supported by disabled people, and it provides a national criteria instead of forcing a prescribed criteria locally that would result in a post code lottery for the most severely disabled people. This is what will happen in Wales under the proposals.

“I’m calling for each Assembly member to sign up to my Statement of Opinion, and urging as many people to contact their Assembly Member asking them to support it. So far 20% of Assembly Members have signed up. I would hope that Labour Assembly Members would support it, as it chimes with their own party policy that was only passed earlier this year following a strong grassroots campaign.”

Disability campaigner Nathan Lee Davies, of Wrexham, gave his backing for the Statement of Opinion:

“This is a very frightening time for disabled people with high care and support needs across Wales as they are being asked to rely solely on cash-strapped local authorities to meet their daily living requirements. The Welsh Government is quite simply washing its hands of all responsibility towards this section of society.

“Care packages were originally agreed upon by the disabled individual, local authorities and a third-party social worker who was entirely independent. Under the new system, who would disabled people be able to turn to if they did not agree with the local authority? The existing tripartite system for deciding care packages MUST be maintained.

“I should also underline the fact that I am an employer who provides work for five other people. The loss of WILG could mean that my personal assistants will be losing significant amounts of work.”

The Statement of Opinion says:

This Assembly:
1. Notes the cuts suffered by local authorities over recent years, and the squeeze on social services budgets across Wales.
2. Further notes that article 19 of the United Nations Convention on the Rights of Persons with Disabilities states how people with disabilities should have “choices equal to others”.
3. Commends the Scottish Government on introducing a successful Independent Living Fund that is trusted and has a national criteria.
4. Believes that the Welsh Independent Living Grant should be retained as a national funding package with a national criteria, ensuring the recipients independence, along the lines of ILF Scotland.
Anybody wanting to urge their AM to sign the Statement of Opinion should ask them to support OPIN-2018-0094 The future of the Welsh Independent Living Grant

SOP and signatories here: http://record.assembly.wales/StatementOfOpinion/94

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.

***

Plaid Cymru AM Issues Statement of Opinion #SaveWILG

Plaid Cymru AM, Llyr Gruffydd has released the following Statement of Opinion to the delight of everyone working on the #SaveWILG campaign:

OPIN-2018-0094 The future of the Welsh Independent Living Grant
Tabled on 18/06/2018

This Assembly:

1. Notes the cuts suffered by local authorities over recent years, and the squeeze on social services budgets across Wales.

2. Further notes that article 19 of the United Nations Convention on the Rights of Persons with Disabilities states how people with disabilities should have “choices equal to others”. 

3. Commends the Scottish Government on introducing a successful Independent Living Fund that is trusted and has a national criteria. 

4. Believes that the Welsh Independent Living Grant should be retained as a national funding package with a national criteria, ensuring the recipients independence, along the lines of ILF Scotland.

Subscribers

Adam Price – Carmarthen East and Dinefwr

Sian Gwenllian – Arfon

***

A Statement of Opinion on a matter affecting Wales may be tabled by any Member other than a member of the government; and any such Statement may be supported, opposed or otherwise subject to comment in writing by any other Member. Statements of Opinion are published on the Assembly website but there is no Assembly decision on them.

 

 

Call Out To Welsh Independent Living Grant (WILG) Recipients

I am writing as a recipient of the Welsh Independent Living Grant (WILG) and a disability activist who intends on asking Welsh Labour to reconsider their decision to close WILG as of April 2019. I would like to hear from other WILG recipients in the hope of holding a series of public/virtual meetings to discuss how we can best oppose this closure and create a pressure group to support each other through this worrying time.

We are particularly interested in those living outside of Wrexham County Borough Council as we attempt to show that this problem of reducing hours of care and support is not just confined to residents of Wrexham. Having said that, please don’t hesitate to get in touch even if you live in Wrexham. The more evidence we can gather, the better. 

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 1,200 people are helped by the scheme.

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.

Something needs to be done as our disabled friends in England have suffered under a similar system that has seen local authorities being solely responsible for their care and support since 2015. This cannot be allowed to happen in Wales as well. We must organise ourselves and demand to be listened to.

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.

They 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.​ 

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…

WILG recipients who wish to help make a difference should contact nathandavies01@hotmail.com

Further reading is available below:

‘I will spend what remains of my life fighting this if I have to’ – Disabled man’s battle for grant to live independently

Wales Live, BBC One Wales, 09/05/2018

Welsh Government under pressure over disabled grant

Disabled man continues fight for independent lives in Flintshire and Wrexham

This disabled man has lost half his care after Tories axed the Independent Living Fund

Welsh Government has ‘sold disabled people down the river’

Independent living grants: Disability campaigner fear cuts

Letter from Minister for Social Services and Public Health to the Chair of the Petitions Committee

David J Rowlands AM

Chair

Petitions Committee National Assembly for Wales

SeneddPetitions@assembly.wales

21 August 2017

Dear David,

Thank you for your letter seeking my views on a petition submitted to the Petitions Committee by Nathan Lee Davies in relation to the closure of the Welsh Independent Living Grant.

As Mr Davies outlines in his petition, the Welsh Government put in place in 2015 the Welsh Independent Living Grant (WILG) with local authorities to enable them to maintain payments to recipients in Wales of the Independent Living Fund (ILF). This was following the closure at that time of the ILF by the UK Government. We introduced this grant to ensure continuity of support in the short-term for recipients. This was to help them meet the additional costs of living independently in the community in a similar manner to the financial support they received from the ILF. This arrangement was to provide time for us to consider the most appropriate way to provide support to recipients in the longer-term, so as continue their ability to live independently.

As Mr Davies indicates, to assist with our consideration of what that longer-term support should be a stakeholder advisory group had been established. This had representation from the organisations which represent and act for disabled people in Wales (such as Disability Wales and the Dewis Centre for Independent Living), representation from local authorities and some recipients themselves. The majority of the representatives on the advisory group were, as Mr Davies says, from the third sector or had themselves received payments from the ILF. This was because we wanted advice from those who fully appreciated the outcomes disabled people seek and what they required from the arrangements we were to put in place to support their independent living.

The advisory group considered a number of potential options to provide support in future to those who used to receive payments from the ILF. These ranged from perpetuating the WILG indefinitely, or for a set period of time, to establishing similar arrangements in Wales to that of the ILF outside of local authorities’ provision, to having support provided in future through local authorities’ social care. The advisory group considered the advantages and disadvantages of each option in terms of its effectiveness to support former recipients and its fit with supporting the larger group of disabled people in Wales who had been excluded by the UK Government from receiving support from the ILF (as it had in 2010 closed the ILF to new entrants).

I am not sure why Mr Davies thinks the advisory group wished to keep the WILG. On the contrary, overall it accepted that the arrangements we had put in place through the WILG could only ever be temporary while a longer-term solution was found. After considering the potential options in the light of the issues I set out above, the advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. None of the members of the advisory group opposed this recommendation.

The advisory group favoured this option as it matched the future support former recipients would receive with that being provided generally to disabled and older people in Wales. This is through our new person-centred ethos for social care being delivered through the Social Services and Well-being (Wales) Act 2014. The Act came into effect from April last year and changes the way people’s needs are assessed and the way support is delivered. People now have more of a say in the well-being outcomes they wish to achieve and the care and support they require to deliver those outcomes. This is similar to the ethos behind the original establishment of the ILF. The Act also contains stronger powers to keep people safe from abuse and neglect.

The advisory group also saw this option as the way forward as it removed the inequitable two-tier approach which currently exists to supporting disabled people in Wales, with some receiving only support from their local authority, while others can receive this as well as dedicated payments from the WILG.

It is also important to note that prior to the advisory group’s considerations we undertook a public consultation on a number of possible options to provide support in future. While it is true that the majority of those who responded favoured arrangements in Wales similar to those of the ILF, this was not the option favoured by all recipients who responded. Indeed the vast majority of recipients did not respond to the consultation at all. Nevertheless, my officials did contact those in the Scottish Government to establish the basis of the dedicated support arrangements for former ILF recipients in Scotland and the possibility of those arrangements being extended to Wales.

While ILF Scotland could administer and make payments on behalf of the Welsh Government, it became clear it would not be in a position to do this for a considerable period of time. In addition, it required significant set-up and operating funding to administer our payments, totalling in the first year of operation well over £1 million with annual operating funding in excess of £0.750 million. Such funding would have needed to be top-sliced from the overall funding available to support former recipients in Wales, thereby substantially reducing the funding available for their support itself. On this basis we did not believe that these arrangements would be acceptable given the reduction in support to which it would lead, or that they provided good value for money. Overall the advisory group shared this view and was keen that already limited funds were not used disproportionately on establishing and maintaining separate arrangements to provide support.

Consequently, I accepted the stakeholder advisory group’s advice to have support to former ILF recipients in Wales provided in future by local authorities as part of their social care provision. To put this into place the advisory group also recommended that there should be a two year transitional period, whereby in the first year authorities establish all recipients’ desired well-being outcomes and agree with them the support they require to achieve these. In the second year recipients would transfer over to receiving all of their support from their local authority, with their payments under the WILG ceasing at the point at which this occurred. I also accepted this recommendation in full, with as a result the transitional period commencing from 1 April this year and due to conclude on 31 March 2019.

Clearly those who wished to see a different option chosen will be disappointed with the decision taken. However, that decision did not ignore the advice of the representatives of disabled people in Wales on the stakeholder advisory group but was fully in accordance with it.

Yours sincerely,

Rebecca Evans AC/AM

Gweinidog Iechyd y Cyhoedd a Gwasanaethau Cymdeithasol

Minister for Social Services and Public Health

 

Fighting for independent living in Wales

ASSISTANCE NEEDED FROM PEOPLE ASSISTED BY ILF IN SCOTLAND OR NORTHERN IRELAND. PLEASE READ ON FOR FURTHER INFORMATION.

ADAPTED FROM Disability Rights UK Factsheet F698

The Independent Living Fund (ILF) was a, Government funded, discretionary scheme which helped people who had both day and night care needs and who were getting the high rate care component of Disability Living Allowance. Those helped under the scheme were able to receive a joint ILF/local authority funded care support package to help them live independently in the community rather than in residential care.

The UK-wide Independent Living Fund (ILF) has now been closed since 1 July 2015.

In England, local authorities are responsible for care provision rather than the ILF.

Meanwhile, disabled people in Scotland receive help from a new Scottish Independent Living Fund from ILF Scotland.  Northern Ireland have also set up their own ILF administered by Scotland.

In Wales we are clouded in uncertainty with the temporary Welsh Independent Living Grant (WILG) which is due to run until April 2017 – depending on confirmation beyond March 2016.

I have teamed up with a friend of mine – Sheila Meadows OBE – to launch a campaign to try to protect independent living in Wales by ensuring that when WILG finally expires it is replaced by something similar to what has been established in Scotland and Northern Ireland.

We certainly don’t want the Welsh government to follow the lead of England by giving funds for Independent Living to local authorities.  Councils are already under extreme financial pressures and the concern is that funds meant for the benefit of disabled people would be used in other areas such as education, transport or maintenance.

Therefore, I would like to ask disabled people, their families and carers in Scotland and Northern Ireland for their opinions and experiences of the new ILF packages they receive.  How was the transition from the ILF to the new Scottish administered system? Did you need to be reassessed to qualify for the fund? Have you had a reduction in your hours of care/work?  Have you experienced any glitches in the new system or is it as dependable as the former ILF?  Do you now have long term security? Has there been an increase or decrease in your personal contribution to the fund?

The answers to questions such as these would be central to our fight to create a similar system and sense of security in Wales.  Any help that you can provide would be greatly appreciated.  You can email me via the form on the Contact page, or tweet me at @nathanleedavies

ANY INFORMATION SHARED WILL BE TREATED CONFIDENTIALLY.

Many thanks and I look forward to hearing from you soon.

FURTHER READING

http://www.leaderlive.co.uk/news/149987/our-fight-to-fund-independent-lives-in-flintshire-and-wrexham.aspx#.VZu96zMTWf4.twitter

http://www.independentlivingfund.scot/

http://www.independentlivingfund.scot/northern-ireland-independent-living-fund/