Direct Payments

Incompetence #SaveWILG

Even though events in February suggested that we had been successful in our attempts to #SaveWILG, I am still struggling to live a comfortable, independent life.

The problem is that Wrexham County Borough Council are simply incompetent, and failing in their duty of care towards me. This has recently been highlighted by the fact that I have run out of money in my Direct Payments/WILG account.

This is hardly surprising as I have been forced to use the funding I receive for 86.5 hours of support per week on 24/7 support instead. This is due to the fact that I live with a progressive, genetic disease of the nervous system. I have always known that this condition will deteriorate, and it should come as no surprise to anyone that I am need of extra support. This is not something that I am choosing, rather something that I categorically need.

I struggled to pay my staff their well-deserved wages earlier this month. This was due to a £2,200 bill from HMRC, which was unexpected and was a bombshell to my financial affairs that I could not recover from. WCBC agreed to pay an emergency payment, but this did not arrive in my account until eight days later. In the meantime, I had to borrow money from family members to ensure that my staff were paid on time. I do not like having to borrow money, but I had no option. This was both embarrassing and stressful.

I have since been told that senior  management have refused to sanction any further emergency payments, which is obviously very stressful for my staff and myself. I am supposed to be having an independent reassessment soon. This cannot come quickly enough, and is really a matter of urgency as I do not have any confidence that WCBC will resolve this issue.

I informed WCBC back in October/November 2018 that my condition had deteriorated to such an extent that I would need 24/7 support. This was met with scoffing and I was told that no one in Wrexham receives such a care package. This is why I have not been in contact with anyone from WCBC who have failed to provide me with the support that I need to live independently. It is clear that WCBC have failed in their duty of care to myself, and in all probability, many others.

I feel that WCBC have put me under physical and mental stress by denying me the freedom to live the life that I choose. If I did not need support 24/7 I would not ask for it.

I think it likely that the threatened refusal to make a second emergency payment breaks the law. The Code for Part 4 does not limit emergency payments to a single occasion: Para 158 states very plainly that local authorities must be prepared to make emergency payments when they are needed. Welsh Government civil servants have alluded to this in emails when I have been warned that I  “need to watch closely and alert the council if this situation looks like it is to occur again.” I read this to mean that I need for support is paramount and that if it looks like I will run out of funds again I should ask the authority who must ensure that I do not run out of money.

While this reassessment  process takes its time, I wonder what are they going to do to provide the basic level of care needed with regard to the next payment day (September 2nd)? WHO exactly refused the emergency payment and on what grounds? What do they think the consequence of that must be?

I have done everything in my power to show that I am not misusing Direct Payments. I am transparent in everything that I do. Pity the same can’t be said of senior management at WCBC, who are merely proving that local authorities cannot be trusted to provide social care, as #SaveWILG campaigners have been highlighting for four years.

I believe my situation will be sorted out by independent social workers, as I have little confidence in WCBC. I will keep readers up to date with this diabolical situation in the hope that it will provide guidelines to other WILG recipients.

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Letter to WILG recipients from Deputy Minister for Health and Social Services, Julie Morgan AM #SaveWILG

All WILG recipients – and their families – should be alerted to the following letter, which explains what happens next in the WILG transition process. This is particularly important for those of us who are unhappy with the level of support we’re receiving from local authorities. I am happy that we have made further progress, but now is not the time to celebrate. We have to make sure that local authorities implement the instructions that they have received from the Welsh Government.

An official response from the #SaveWILG Campaign to this letter will follow after the Easter break.

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To: All former recipients of the Welsh Independent Living Grant

Welsh Independent Living Grant (WILG) – Update

As we reach the end of the two years where people who used to receive payments from the WILG have been transferring to local council support, I would like to share an important update with you.

Since 2017 local councils have met nearly all people who used to receive WILG payments and agreed with them what care and support they will receive in future to help them live independently. Some people will now be having all their support arranged by their local council and others will be receiving direct payments so they can purchase this support themselves.

For the vast majority of people their new care and support is similar to what they had using their WILG payments. In some cases it has increased, to support their ability to live independently.

For a small number of people, the new package of care and support is smaller than what they had previously received through WILG. This can be for a range of good reasons, for example where people’s needs are still being met but just in a different way. We know from our enquiries that many people are content with the new support they are receiving, even when that package of care is smaller than before.

However, some people disagree with the outcome of their local council’s assessment. Everyone in Wales deserves support to live independently. As a result I have concluded that people who used to receive the WILG and now disagree with their council’s assessment of their care needs should have the option of having their needs looked at again by an independent person.

If you agree with the package of care and support from your local council, then this update does not affect you and you do not need to respond in any way.

However, if you disagree with the outcome of your new care arrangement, please contact your local council to ask for an independent assessment. Or if you have not started or completed your assessment yet, and would prefer for this to be done independently rather than by your local council, please also let your local council know about that. In either case, if you would like an independent assessment please let your council know by Friday 14 June 2019, at the latest. Your current care will remain unchanged until after the independent assessment has been completed.

The Welsh Government will be paying for these independent assessments and meeting the cost of any additional care and support a person might need as a result of them. Because of this, for people who used to receive WILG, while care arrangements may change in order to better meet people’s needs, this should not be in order to make any savings.

I do not want people to be waiting for an independent assessment. However, it is important to organise these independent assessments properly, so that they meet the required standards. We plan to have the arrangements for the independent assessments in place by the end of June so as to begin these from July onwards. Your patience, therefore, will be appreciated, while the details are worked out.

Julie Morgan AC/AM
Y Dirprwy Weinidog Iechyd a Gwasanaethau Cymdeithasol
Deputy Minister for Health and Social Services

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Direct Payments Guide Issued by Social Care Wales

Many thanks to Rosemary Burslem for drawing my attention to the following guide to Direct Payments, which has been published by Social Care Wales. It can be read in full by clicking here. 

This is a very illuminating guide, which clearly shows that Direct Payments can be used for other things as well as support from personal assistants.

“Myth 3 Direct payments are only for employing PAs

The great thing about direct payments is the opportunity to be creative. Employing a PA is one of many options to meet an individual’s personal well-being outcomes. For example, direct payments can be used to buy equipment, pay for activities to reduce loneliness, isolation or to develop confidence or gym membership or transport to access community facilities.”

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The Dewis website- see: https://www.dewis.wales/using-direct-payments says:

“Social activities

You can spend your money on social activities, evening classes and even holidays if they are in your care plan. Direct payments can also help if you want to do paid work or a training course.

Equipment and minor home adaptations

If you need special equipment or minor home adaptations an amount to cover these things might be included in your direct payments.

Special equipment might include computers, mobility aids, safety devices, transfer aids and assistive technology.”

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It is clear that Direct Payments are intended to improve choice, control and independence for people. This is further evidence of the appalling practices of Wrexham County Borough Council (WCBC), who have done everything in their power to discourage DP recipients from spending their money on things that they are clearly entitled to. I believe that WCBC view that DP’s can only be used to pay for support is not in line with the ethos of the law on Direct Payments. When drawing up Care Plans with people who have chosen to have DPs Social Workers and clients should be allowed to be creative in how this funding is spent, as in the examples above.

Those of us who do receive Direct Payments throughout Wales should read the article provided by Social Care Wales, and remember that we are in control of the money we receive and as long as it is spent responsibly and appropriately, then there is little that Local Authorities can object to.

The Dreams In Which I’m Dying…

The following blog includes songs by Gary Jules (Mad World) and John Farnham (You’re the Voice). I am not claiming any artistic influence on these songs at all.

I was watching Murder Made Me Famous on the Really Channel at some godforsaken hour last week as I tried to keep my eyes open and delay the uncomfortable hours that were sure to follow.

This particular episode concerned the crimes of Reverend Jim Jones –  an American religious cult leader who, along with his inner circle, initiated a mass suicide and mass murder in JonestownGuyana.

It really is a fascinating tragedy and I encourage everyone to read more about the Peoples Temple as only by learning lessons from the past can we hope to build a brighter future for everyone…

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Things have changed a lot in the past forty years, but I still fear that mass murderers such as Reverend Jim Jones exist, albeit in different forms.

It has been a long weekend full of three draining panic attacks. The lack of support and information from Local Authorities in relation to Welsh Independent Living Grant recipients is really affecting both my mental and physical well-being. Two of the panic attacks were brought on by madly rushing to use the loo as the urge to relieve myself comes on all of a sudden. My body is unable to react quickly enough, so accidents do happen.

I also suffered an attack before going to bed on Friday night, as I can almost predict the hours of discomfort, pain and panic that lie ahead during lonely nights without support. I am a born fighter – and I do not have any plans to slow down – but the pressures being put upon me are becoming increasingly difficult to cope with,  as my progressive disability continues to eat away at my nervous system.

I require 24/7 support NOW if I am to continue living independently and contribute to my local community. This is not something that I want for selfish reasons, but simply something that I NEED.

I found the following article to be very illuminating and it is certainly something that I can relate to. It was written by Mike Sivier from Vox Political and can be read by following this link.

It seems that poor and vulnerable people are still being controlled and manipulated today, in a way that Reverend Jim Jones would be proud of.

Don’t get me wrong, I am proud that the Welsh Government have listened to #SaveWILG campaigners and are now acting accordingly. I have received encouraging emails from ministers and civil servants who are working on implementing a new policy to protect independent living for WILG recipients.

It is not the current Welsh Government that I have a problem with, but the previous neo-liberal regime, whose mistakes I am now paying the price for. Local Authorities also deserve to shoulder some of the blame for refusing to provide adequate support for those that need it, purely for selfish financial reasons.

I hope I am able to go on for many years, but if I were to pass away tomorrow I would guess that someone at some level would say that “lessons need to be learnt”. I am still breathing, so why can’t the relevant action be taken now to improve my quality of life? I understand and am happy that the Welsh Government are doing all they can to push through implementation as quickly as they can, but in the meantime I am going to use the extra money in my Direct Payments account to fund the extra support that I need.

I have since found out that I will be unable to offer a PA anything more than the minimum wage to stay with me overnight due to ludicrous pay rates set by Wrexham County Borough Council. I should be able to pay staff working through the night, the same as I pay a member of the staff throughout the day. How can WCBC justify paying different rates for day and night? It appears as if my next fight for justice has been earmarked.

The book that I am itching to write, along with the work of art that I have conjured in my head will just have to be put on hold again…

All I know is that I am not going to sit in silence or live with fear any longer as I believe  justice is on my side. I can see all the inadequacies of the current chaotic system of social care from my position on the moral high ground and I will continue to keep raising my voice until disabled people, in particular, are able to live on a level playing field with the rest of society.

 

Open Letter to First Minister Mark Drakeford #SaveWILG

Dear Mark

This is an incredibly worrying time for all disabled people and their families across Wales.  There are only 63 days left before the Welsh Independent Living Grant is due to end, leaving individuals at the mercy of cash-strapped Local Authorities  who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow.

The fact that this neo-liberal policy is still being forced through by a Welsh Labour Government is unbelievable: frankly, it makes it even worse. I always thought that I would be protected from the brutality shown by the Tories in Westminster, because I live in a land governed by a social, democratic party. Unfortunately, the Party that I know and love seem to have lost their way under the previous leadership, which is why I was overjoyed by your election victory to become our new First Minister.

I am confident that Welsh Labour is now travelling in the right direction towards a socialist future which you championed during the Leadership Hustings. In an interview with the BBC you also said the following about the future of the Welsh Independent Living Grant:

…”if an independent evaluation “shows the new system is not working as well as the old one then I would be prepared to reverse it because this is money intended for a very specific number of people for a very specific purpose”.

The deep-dive that was recently undertaken by the Welsh Government, to analyse the performance of Local Authorities relating to the WILG transition, is full of errors and quite frankly not worth the paper it is written on. How can an investigation into the circumstances surrounding the end of WILG be conclusive without having consulted disabled people who will be affected? My comrades dismantled the deep-dive results in our recent meeting with Deputy Health Minister, Julie Morgan AM.

The closure of the Welsh Independent Living Grant is such a destructive move to disabled people’s rights and I do not believe that a progressive Party such as ours should be going down such an avenue.

#SaveWILG campaigners have presented the Deputy Health Minister with an 80 page dossier of evidence against the closure of WILG. In addition, we have the backing of Welsh Labour members who overwhelmingly voted in favour of the Clwyd South motion to save WILG at Conference in April 2018. I believe you pledged to listen to the voices of members during the Hustings and they have certainly been vocal on this subject. We have also had support from Jeremy Corbyn, Shadow Chancellor John McDonnell, MP’s such as Chris Williamson, Ian Lucas and Chris Ruane. Film Director Ken Loach also supports our campaign.

Criticism of Welsh Government policy on Independent Living has also been made by the United Nations Convention on the Rights of People with Disabilities (UNCRPD):

However, various disability organisations in Wales had advocated setting up a national independent living scheme in Wales as aligning with a citizen directed system of support rather than the approach now adopted by the Welsh Government.

We recommend that the CRPD Committee asks:

Can the Welsh Government explain:

How it reached a decision to move all ILF recipients to normal social care provision from 31 March 2019, rather than setting up a national independent living scheme?

How it will ensure protection for article 19 rights of those formerly eligible for the Independent Living Fund after 31 March 2019?

I do not believe Welsh Labour should be having to defend themselves against the UN as I know your personal intentions are to ensure universal equality throughout Wales, but now is the time to take positive action and start listening to Welsh Labour members and disabled people and their families.

Personally, I have been treated abysmally by my Local Authority. I find myself in the position of having to teach my social worker about the Social Services and Well being Act. I am not being allowed to use my Direct Payments to meet my Personal Outcomes as described in the SSWBA and feel this vindicates my insistence on the need to maintain the tripartite system when deciding on and funding future care provision.

The reassessment process – which was originally due to end by September 30th 2018 and shows no sign of being completed soon – is really having a negative impact on my physical and mental health. When I first met with my social worker at the end of November 2018, she laughed when I suggested that I would need 24/7 support. She declared that no one in Wrexham gets such a thorough level of support [whether they require it or not?]. She said that even if we applied for such levels of care and support, that the panel would not accept such a request. This is a total departure from what the SSWBA promises. There is definitely no co-production going on and Local Authorities seem to be treating disabled people as a burden.

Without the overnight support I need to fully function in society, I have to stop drinking at 8pm at night, get ready for bed at 10pm and cannot wear my hand splints or use my leg supports during long and uncomfortable nights. I often find myself having to call on my 68-year-old father to assist me in the night, even though he lives a 10 minute drive away and has arthritis in both hands.

As Tanni Grey-Thompson said on Wales Live (23/01/19), it will cost the Welsh Government more in the long term to push ahead with this strategy of devolving funding to Local Authorities. It just makes no sense whatever way you look at it. Disabled people and their families never wanted such a situation to develop as was indicated in the original consultation that took place during 2015/16. I have been asking to see the consultation documents since October 2017, but I keep being directed towards a summary document. We all know that a summary can be manipulated and edited to suit the publishers. If the summary is accurate why can I not access original consultation responses?

It is often claimed by the Welsh Government that the original stakeholder group were united in agreement with the closure of WILG and the transferring of funds to local authorities.This is quite simply untrue. The members of the stakeholder group that I have spoken to have stated their frustrations with the whole process: “I disagreed with one side of the room almost continuously,“ and “I would be amazed to see minutes of a meeting where all participants agreed that passing this WILG over to the local authority beyond the ring-fenced period was the way forward.”  Others have said “I used to go home from all these stakeholder groups thinking we had agreed certain things to discover that was not what had been recorded.” and other activists argue that many officials and civil servants do not actually “know what Independent Living means – they still think ‘independent’ means managing without support”.

It would greatly assist me in understanding Welsh Government’s decision making process on this issue if the minutes of all of the meetings of the stakeholder advisory group can be provided, and I will submit a Freedom of Information Act request if necessary.

I could go on and on, but time is against me and I would merely be repeating much of what can be read in my attached dossier of evidence. At over 80 pages long, I believe it is a comprehensive guide as to why the Welsh Independent Living Grant should be maintained indefinitely. The dossier includes information of the success of the Independent Living Schemes set up in Scotland and Northern Ireland that shows the lack of imagination shown by the Welsh Government compared to our neighbours.

Please note that this letter is written with the deepest respect towards yourself and your cabinet members. I am a loyal Welsh Labour supporter and I have belief in the 21st Century socialism that you intend on developing. The problem is that we cannot wait any longer and the changes need to be made immediately. There is no sense in a proud socialist Government copying the exact same model rolled out by the Conservative Party in Westminster.  Moreover, if the original decision was wrong then your team needs to have the courage to simply reverse it.  Tinkering with the detail in a bid to spare the blushes of your predecessors is just not acceptable: in fact it’s morally dishonest.

I know that you are extremely busy with Brexit and other pressing concerns, but disabled people with high care and support needs across Wales are in need of your leadership now. I look forward to meeting you again in the near future and should you require any more information from the #SaveWILG campaign, please do not hesitate to contact me.

Wishing you strength and solidarity

In hope…

Nathan Lee Davies
#SaveWILG campaign

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If It Doesn’t Challenge You, It Won’t Change You

It has been a busy old week that has included hospital visit to the cardiologist and physiotherapist, as well as stressful meetings with the Wrexham Supporters Trust board and illuminating emails from Welsh Labour bureaucrats  that clearly show that the Welsh Government have something to hide over the WILG debacle.

HEALTH 

It has been a mixed week health wise. Depending on where you stand, my visit to the cardiologist revealed good/bad news that my heart is in good working order and I don’t have to return to the cardiologist for another twelve months.

I have also been to see the physiotherapist who raised concerns about my posture in my wheelchair. This echoed concerns raised by the wheelchair assessment team who I visited a few weeks ago. While I was with the physiotherapist she showed me, on a skeleton, the extent of my scoliosis. It was upsetting to watch her bend the spine of the skeleton in to a disfigured position. I guess this is life with ataxia – constantly trying to come to terms with a disability that is forever stressing.

MEETING WITH WREXHAM SUPPORTERS TRUST 

On Wednesday night I was at a meeting with some familiar faces who I have mingled with for over thirty years, as a Wrexham AFC supporter. However, the majority of people at this meeting between the board of Wrexham Supporters Trust and the Disabled Supporters Association Committee did not seem to show any understanding of consideration to the plight of disabled supporters in general.

This is neither the time, nor place to go into a deep discussion of everything that was said at the meeting – I will save that for another day, but it should be noted that I was hugely disgruntled by the attitudes shown by a so-called ‘community club’.

SUSPICIOUS MINDS

I will be writing a separate blog dedicated to the highly suspicious actions of the Welsh Government in the latest communication as the battle to #SaveWILG continues and intensifies.

I am being put under an intense amount of pressure as my body deteriorates and being forced to fight for the right of disabled people against the Welsh Government, Wrexham Council and Wrexham AFC. Luckily I have been fighting all of my life and I have the strength and stamina to carry on standing up for what is right thanks to my amazing circle of friends and comrades…

TOM ALLEN 

36634891_10155554936421846_1430258593860419584_On Thursday evening [26/7/2018] I went to watch the supremely funny Tom Allen in action at William Aston Hall at Glyndwr University.

I have watched this comedian performing before, when he starred alongside Suzi Ruffell at the Catrin Finch Centre, which is also part of Glyndwr University.

When I heard that Allen was performing at the Catrin Finch Centre again, I quickly snapped up tickets. This was some time last year I think. Earlier this year I received a phone call saying that due to the high demand for tickets, the show would be moved to the larger William Aston Hall. I was disappointed by this as the Catrin Finch Centre is a more intimate venue, where comedians do not need to rely on the use of a microphone. This is good for me and my hearing, which struggles to fully grasp what is being said when a voice is projected through a microphone.

Last night proved that this is indeed the case. I was frustrated beyond belief as Allen energetically pranced around the stage in front of me, and came out with classic quips judging by the roars of laughter around me. Alas, I could not decipher any of the jokes and could only pick up on certain words such as ‘party rings’, ‘ham sandwiches’ and   ‘Phil Spencer’.

Subsequently, I decided to leave at the interval. This was no judgement on Tom Allen, but just another frustrating sign that my progressive condition is accelerating and stopping me from doing things that I enjoy. What I really needed was subtitles and this got me thinking. Last week, I attended a Disability Wales conference on Direct Payments in Newtown, Mid Wales. Disability Wales had organised for  Palyntype support to be available.

This is basically a machine for typing in shorthand, now often used in transcribing speech to text for deaf people.This transcription was projected on to a large screen so those that are hard of hearing can follow everything that is being said. I found this to be extremely useful and beneficial, and would have appreciated it last night. If I ever #SaveWILG this is something that I would like to campaign for being used in may more locations across the country, as we strive to make events accessible to all.

I am hoping for a quieter weekend…

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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