Social Services and Well-being (Wales) Act

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 

 

 

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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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

Response from Huw Irranca-Davies to Open Letter #SaveWILG

Same old story…

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4 June 2018

Dear Nathan,

Thank you for sending the link to your blog https://nathanleedavies.wordpress.com
on which you have posted an open letter to me, dated 10 May 2018, seeking my support to retain the Welsh Independent Living Grant (WILG). I was also grateful for the opportunity to meet you at your home earlier in the year, and to discuss your concerns with you in detail. I reiterate again that the Welsh Government is firmly committed
to ensuring a smooth transition from the temporary WILG to the new arrangements, as
agreed with the stakeholder advisory group, and to ensure the focus at all times is on the
well-being and independent-living outcomes of every individual.

I note what you say about the information you have received from local authorities about their experience of the transition process to transfer people’s future support to their social services provision. You will understand that without sight of this information it is not possible for me to comment, and I would therefore be grateful if you could pass  any information on to me. However, I can report on progress on the transition to date, and the feedback we have received from local authorities through the periodic monitoring of the transition.

As of 31 March this year local authorities have reported they have completed, or are in the process of completing, around 1,000 of the reviews they need to undertake as part of this process. These are to agree people’s well-being outcomes and how they can be met in
future. As a result, around 400 people have now gone on to receive their support from their local authority – nearly a third of the total number of 1,250 who were receiving ILF payments as at 31 March.

In terms of outcomes, authorities report that a large number of those now receiving their
support from their local authority are receiving support similar to that they received from the ILF. Some people are receiving a slightly different level of support than previously and this includes people whose level of support has increased. Overall, local authorities inform us that no major concerns have been raised about the support received. Clearly there will be some individual circumstances where people will be uneasy about the nature and level of the support their authority considers appropriate in their case, but where this has occurred authorities are discussing this with the person concerned.

Local authorities providing support in this way is, of course, not new, as most individuals
would have had to receive this from their authority as part of the eligibility to receive ILF payments. Implementing this change in a managed approach, with the two-year transition period we have put in place, has ensured there is an appropriate period of time in which individuals can consider and agree their well-being outcomes with their authority, and agree all of the support they require to deliver these outcomes, not just the support they previously obtained through their ILF payments. To facilitate this, the funding of £27 million a year, which is provided by the UK Government for this purpose, has been distributed in its entirely to local authorities on the basis of the level of grant funding they previously received. This is to ensure they have the level of funding they require to maintain payments to people while their future support package is agreed and provided, following which this funding can be used to meet the cost of that support package.

Let me turn to matters you raise in respect of the stakeholder advisory group. This group
was established by the then Minister for Health and Social Services, Mark Drakeford AM,
with the purpose of agreeing a way forward following the temporary two-year transition
period. The group comprised of representatives of Disability Wales, the Dewis Centre for
Independent Living and the All Wales Forum; a service user’s parent; and representatives from local authorities and the Welsh Local Government Association.

As I advised the Chair of the Petitions Committee, David J Rowlands AM, in my letter to him of 14 November last year, which I believe you have seen, no formal minutes of the meetings of the stakeholder advisory group which considered this issue were made. Instead short summary emails were sent to members setting out agreed action points arising from meetings.

The advisory group considered a number of potential options to provide future support.
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. The advantages and disadvantages of each option were considered, in terms of its effectiveness to support people who had previously received ILF payments 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 following its closure to new entrants in 2010.

There was a fine balance between these issues and on occasions members had slightly
differing opinions on the potential options. Nevertheless, the stakeholder advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. This it considered was, overall, the best way forward for individuals and the most effective way of utilising the limited funding available for their direct benefit. It also acknowledged that this matched the support other disabled people in Wales were already receiving and was in keeping with our person-centred ethos for social care being delivered through the Social Services and Well-being (Wales) Act 2014. It therefore removes the inequitable two-tier approach which existed, with some disabled people receiving only support from their local authority while others could receive this in addition to dedicated payments from the ILF. At the time of this decision, and indeed since, no member of the group or any organisation represented on it has indicated they disagreed with the advice given to the then Minister upon which he made his decision.

I am happy to agree to your request to meet to discuss matters relating to the WILG. I met you earlier in the year to hear your concerns, as outlined again in your open letter, and to explain how this decision was reached and the future action I am taking. It would be good to follow up on that earlier discussion. My Diary Secretary is, I believe, already in contact with you to arrange the details of this. In the meantime, I would be grateful if you would post this reply to your letter on your blog.

Yours sincerely,
Huw Irranca-Davies AC/AM
Y Gweinidog Plant, Pobl Hyn a Gofal Cymdeithasol
Minister for Children, Older People & Social Care

Activist celebrates after Welsh Labour backs independent living campaign #SaveWILG

Taken from an original article by John Pring on the Disability News Service website:

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A disabled activist who has campaigned to save the Welsh Independent Living Grant (WILG) is celebrating after the Welsh Labour annual conference voted to back his campaign.

Nathan Lee Davies has led a campaign to force the Labour-run Welsh government to reverse its decision to scrap the grant, which was introduced to support disabled people with high support needs in Wales to live independently after the UK government closed the Independent Living Fund in 2015.

An estimated 1,300 people in Wales receive support through the WILG scheme.

And this week, at their annual conference, members of Welsh Labour voted in favour of a motion that called on their government to maintain WILG, at least until the next Welsh assembly elections in 2021.

Before the vote, Davies had also secured support from Labour’s UK leader, Jeremy Corbyn, who posed for a picture holding one of the campaign’s “WHERE THERE’S A W.I.L.G. THERE’S A WAY” tee-shirts.

After the vote, Davies posted a blog in which he described his “emotional day” following a victory he said was “key for disabled rights across Wales and throughout the UK”.

He added: “We should all rejoice while remembering the fight is far from over as we need to ensure Welsh Labour listen to the will of their members.”

Davies has previously described his terror at the prospect of his cash-strapped local authority taking over full responsibility for providing his care package, having been told that without WILG his own care package would be reduced from 86.5 hours to just 31 hours a week.

He has described the campaign as a “life or death” fight.

He told Disability News Service yesterday (Wednesday) that the passing of the motion was “obviously the high point of our ever-growing campaign” but that it “does not mean that we have succeeded in securing WILG”.

He said: “We must continue with our campaign and ensure the Welsh government listen and act upon the wishes of their members.

“One thing is for sure, we won’t rest until we preserve and improve the Welsh Independent Living Grant.”

He thanked the cross-party and union support for his campaign – including the “wonderfully supportive” Clwyd constituency Labour party, which proposed the motion – and the other recipients of WILG.

He particularly praised members of Welsh Labour Grassroots – which represents the Momentum movement in Wales – who he said had “worked tirelessly to ensure independent living remains an option for those with high care and support needs”.

Davies is hoping that the Welsh government – which will have a new first minister in the autumn after Carwyn Jones announced that he would be standing down – will now reverse its decision to scrap WILG.

A spokeswoman for Welsh Labour said: “As with all motions passed at conference, this will now be considered by Welsh Labour’s policy process ahead of the next assembly elections.”

The Welsh government announced in 2016 that, after a two-year transition period, it would transfer all the £27 million-a-year provided by the UK government to support former ILF-users in Wales directly to councils.

It decided there would be no continuation of the interim WILG scheme it had been running as a stopgap since the Department for Work and Pensions closed ILF in June 2015, and would not set up a new Welsh ILF, even though such a scheme had been set up in Scotland.

All the £27 million-a-year funding is set to be transferred to Welsh local authorities this year, and they will be solely responsible for meeting the support needs of all former ILF-recipients by 31 March 2019.

The Welsh government’s new Social Services and Wellbeing Act is supposed to provide new rights for people to access a re-assessment of their support at any time, with local authorities under new legal duties to support independent living.

It believes that this is a more progressive system than the one operating in England.

But Davies has said previously that the decision to transfer the £27 million to councils and close WILG meant the Welsh government had “sold disabled people down the river” and was “washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto local authorities”.

R (Luke Davey) v. Oxfordshire CC Court of Appeal 2017 #SaveWILG

The following article is from a website produced by Luke Clements who is a Professor of Law at Leeds University and a Solicitor.

This is an invaluable piece of writing from Mr Clements who would certainly a good person to speak with and have as an ally for our campaign. I remember Sheila Meadows OBE mentioned the work that Mr Clements had been doing many years ago, but he recently came to my attention again following an email from Ann James who has a professional and personal interest in Social Care in Wales. She set up this journal with Luke Clements last Autumn and it is a resource which enables critical discussion and analysis of social welfare law in Wales. It also provides exposition of  the SS&WB (Wales) Act 2014, and provides briefings on aspects of the law.

It is really encouraging to have received an email from someone so knowledgeable at the start of a very important period for the #SaveWILG campaign.

Without further ado here is the excellent article that I will also email to all of my campaign team as we prepare for the Welsh Labour Conference on April 20-22.

***

People in Wales in receipt of the Independent Living Grant, the Welsh Government’s interim measure to soften the blow of the closure the Independent Living Fund (ILF) would have followed R (Luke Davey) v Oxfordshire CC and the subsequent appeal with interest in the hope that the Court of Appeal would overturn the earlier High Court decision.

The Welsh Government has confirmed that the Independent Living Grant will continue in Wales until March 2018 and in the subsequent year all those who previously received the ILF will be re- assessed and have their care and support provided for by their local authority.

It is likely that many former ILF recipients will see attempts to reduce their care and support funding in the same way as Luke Davey.

In this case we have seen the High Court loathed to strike down the Local Authority decision as being irrational and the Court of Appeal found no reason to interfere with the decision of the High Court.

One should take heart that Davey does not give local authorities a carte blanche – and it should most certainly not be taken as creating an open season to cut services. It decides that the well-being duty is a legally enforceable obligation and that once a support plan has been agreed local authorities must provide the funds to meet every aspect of that plan. It also states – in terms – that once there is evidence that a direct payment is insufficient to secure suitably qualified carers then the local authority must address this by increasing the amount paid.

Davey is a case ‘on its facts’: disheartening and quite possibly a personal tragedy for Luke Davey. Cases of this kind come along infrequently but they do not upend the social care legal order.

For us in Wales, the excellent Merton decision and the facts of the Davey case, provides the basis for disabled people to expect an assessment that gives primacy to their well-being outcomes identified by the person being assessed or their advocates. It highlights that Local Authorities need to provide a rational for any changes in provision that will stand up to the test of irrationality should it be challenged in the Courts.

The transition to local authority provision for previous recipients of the ILF is not an automatic signal for a reduction in care provision for the individual who is eligible for care and support.

Response to Minister for Children and Social Care from Sheila Meadows OBE #SaveWILG

I have shared a letter below written by my friend and comrade Sheila Meadows OBE who started the fight to support disabled people with high care and support needs long before I appeared on the scene. Together we have been fighting for disabled people’s rights for over five years now.

She is responding to the letter I received from Huw Irranca-Davies last week. This can be viewed in full here.

I will write my own response to this letter shortly, but I doubt that I will be able to add much more than Sheila has already said. The following letter encapsulates all that we have been trying to get across, but the folk at Welsh Labour seem to lack the humanity and humility to listen and admit that they will need to revise their plans to close WILG before it is too late…

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Dear Mr Irranca-Davies

Thank you for your letter to Nathan Lee Davies. I will respond on a few points which I hope will contribute to the discussion and I ask you to respond to the final point so important in our discussions, but not addressed in your reply.  I refer to the triangulation we spoke at length about – the need for a third independent person or group with power who can mediate between the Local Authorities and recipients should this prove necessary.

You Wrote: …”separate public consultations held in 2014 – one for recipients and the third sector, and another for local authorities on the principle of four potential options for future support arrangements for former recipients of the Independent Living Fund (ILF). I would like to assure you this was not the case. Only one consultation was held with all the responses considered together.”

What we raised was that the analysis of the responses from recipient, third party organisations, etc. and LG were considered separately. Social Services responses indicated their desire to run the future ILF. This was supported by Welsh Government.

You Wrote: …”As Sheila may recollect as a member of the stakeholder group who advised Welsh Government, when the detail of how a resulting shortlist of options could be implemented that option was indeed considered further.”

Yes it was discussed further and the views of the SS representatives and LA were supported over the voice of the recipient.  I used to travel back form Cardiff feeling that I and the voluntary organisations had been able to convince the civil servants and others understand the problems we would face if the funding and decisions were left to our Local Authorities alone. The SSWB act, all assured me, would protect WILG recipients to live independently.   I was not then and have still to be convinced.

You Wrote: …”In addition many were concerned that the increased numbers of disabled people in Wales, who local authorities could claim funding for from the scheme, would result in the threshold to access this system having to be set at a very high level in order to make the scheme affordable.”

It is interesting that you highlight this particular issue as this was about the only issue we all agreed on, but not in the form you recall it.  As social services in the local area must fund or ensure the support of all disabled people who qualify for services, then it was seen by the whole group as fairer across Wales to have a higher threshold set. All agreed that the threshold was too low and would need to be raised considerably, but all felt this would be fair. 

  • When someone required a very large package of care the LA  could turn to a central source for financial support
  • It would also prevent local authorities ‘upping’ the cost of care provision to qualify for the enhanced payment which we know was done to attract ILF when central government ran it.
  • It was also seen as making it an ’All Wales standard’ of eligibility for enhanced care packages for those with the greatest disabilities.
  •  It would also have brought in one of the most important elements, someone/group, who would sit outside Local Government to monitor and mediate and ensure fairness across all authorities. 

Which brings me to my final comment; Nathan and I tried very hard to explain the importance of the ILF social worker in assessments and provision. They would hold LA to account if they were not fulfilling their agreed part in the contract and would also be equally determined that what the recipient or appointee had agreed was also being carried through.  Now if LA decide on a plan for you or in my case my son and I don’t agree, who do I turn to?  If my son is likely to suffer physically or mentally because of a decision, then I can complain but to whom?  To the LA?  How can it be possible to complain to someone about themselves and expect a reasonable outcome? Both Nathan and I thought we had explained this issue very fully with Mathew Hall, Head of Policy Division, but this issue is totally ignored in your letter. Once again, I am faced with the same issues, we have meetings, think the Civil Servants have listened and heard, but find the issues which they don’t fully understand, or unable to find a solution are  totally ignored.  I can understand that you don’t agree with my view but I feel there is a need to respond to the most important issue brought to the meeting.  We called it the ‘Black Hole’

The need for an independent third person is vital. After your visit we did get the letter you sent to Wrexham in November, thank you, it arrived in the middle of February!  Without your direct intervention would this have happened?  I am sure you will not want all such issues to be brought directly to you but to what other support do we turn when the Local Social Services are struggling and unable to communicate with us or support us.  You are aware of our experiences, is it any wonder we cannot trust Local Authorities on the future of WILG recipients to be able to live independently with adequate support? 

With thanks

Sheila Meadows