Welsh Independent Living Grant

#SaveWILG Campaign Update

I have received an update from the Welsh Government, on their efforts to provide independent assessments to all WILG recipients who requested one. It read as follows:

All 14 local authorities who have former WILG recipients who have requested an independent assessment now have a data sharing agreement in place with ICS. As a result ICS now has basic data on the majority of the 50 recipients who have requested an independent assessment in order to progress these. This does not include details of previous care assessments or care plans as both ICS and us wanted their social workers to go into this process without any preconceptions of people’s care needs.

Consequently ICS is now arranging appointments for their social workers to undertake these and has already undertaken first appointments with a number of the 50 recipients across Wales. Following these ICS’ social workers will write up respective care assessments for submission to ICS’ quality control, before discussion with the relevant local authority representative and subsequently a joint discussion with the former WILG recipient concerned. On the basis of the current position ICS estimates it will have completed all assessments by the end of November. 

The reassessment that I received went very well, and was not hard work at all. I had feared that it would be much more invasive than it was. The social worker from ICS was both professional and friendly. She listened attentively to the case we made for 24/7 support, and said that she would be in touch with a decision in between three and five weeks. That was on October 1st.

It is good news to hear that ICS plan to have all the assessments complete by the end of November. This is something that I believe is very important, as the WILG recipients affected do not want another Xmas of worry and stress.

I have spent the last two Christmas periods busy on Twitter, while the rest of my family have enjoyed Xmas dinner. I could not detach myself from the fight to #SaveWILG, even during the festivities. My very way of life was on the line, and I was in no mood to join in with the celebrations while WILG recipients were struggling in such a way. Fingers crossed that this year I will be able to enjoy some Turkey, rather than the meagre meal of beans on toast that I have stubbornly eaten for the past two years in order to make a point.

If any WILG recipients, or their families/friends, still have concerns over the assessment process then please do get in touch.

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Disability News Service: Welsh government ignores social care funding crisis… in independent living action plan #SaveWILG

The following is an article written by John Pring on his excellent Disability News Service website. This can be accessed by clicking here. 

I have been put in a difficult position following the publication of the Welsh Government’s new framework on independent living – Action On Disability – The Right to Independent Living.

I have been extremely critical of this new legislation, but I want to make it very clear that this is a separate issue to my WILG campaign. I will be forever grateful to the Welsh Government for listening to campaigners and acting decisively. Our new First Minister and the Deputy Minister for Health and Social Services deserve particular praise for their hard work and determination to protect a vulnerable section of society.

However, I hope both Mark Drakeford and Julie Morgan can appreciate why I  have to speak out against the new framework due to the lack of consideration of social care. I am a proud member of the Labour Party and fully support the vast majority of the party’s policies, but I reserve the right to be critical of specific programmes and will campaign to improve them.

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The Welsh government has completely ignored the social care funding crisis in a new action plan aimed at ensuring disabled people’s right to independent living.

A public consultation process with disabled people and disability organisations led to “multiple calls” for increased social care funding.

But the final version of the Labour government’s framework and action plan on the right to independent living – which includes 55 actions – says nothing about the funding crisis or the need for more spending on adult social care.

This contrasts with its 2013 framework, which it replaces and which included lengthy sections on access to social care, direct payments and personalised support.

In discussing the engagement process, which took place in 2017, with further engagement late last year on a draft version of the framework, the document says: “We heard that cuts to social care provision have led to lower allocations for Direct Payments which means disabled adults and young people are becoming increasingly isolated and impact to their well-being compromised.”

It also admits that there were “multiple calls for increased funding for health and social care” during that process.

But despite those calls, not one of the 55 actions in the plan mentions social care funding, or the need to address the cuts.

Instead, the action plan details wider measures around independent living, including: barriers to employment; recruitment of disabled apprentices; a review of funding for housing adaptations; collecting evidence on disability poverty; and improving access to health services.

It also includes a planned review of the disabled students’ allowance system; a pledge to improve understanding of the social model of disability across the Welsh government; and action on access to public transport.

There is also a pledge to introduce a scheme in Wales to provide financial support for the extra costs of disabled people seeking election to local councils, to match schemes in Scotland and England.

Nathan Lee Davies, a leading disabled campaigner who has helped secure concessions from the Welsh government on the impact of the closure of the Independent Living Fund (ILF), said the omission was “bemusing” and appeared to be a “major step backwards”.

A spokesperson for the Welsh government refused to comment on the failure to mention cuts to social care funding in the action plan.

But Jane Hutt, the Welsh government’s deputy minister and chief whip, who has responsibility for equality issues, said in announcing the new framework that “supporting people to live their lives in the way they choose is the right thing to do”.

She said the framework sets out how the government was fulfilling its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

But the failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government could be in breach of the convention’s article 19.

Article 19 says that governments signed up to the convention should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

Despite this omission, the framework pledges to “work for continuous improvement in how Wales fulfils its obligations with regard to [UNCRPD] and the Rights of the Child”.

There is also no mention in the document of ILF, and the Welsh government’s decision to close its interim Welsh Independent Living Grant (WILG) scheme, which it had been running as a stopgap with UK government transition funding since ILF closed in June 2015.

WILG closed on 31 March 2018, when the £27 million a year funding provided by the UK government to maintain support to former ILF recipients transferred to local authorities in Wales.

Because of the WILG closure, Welsh local authorities are now solely responsible for meeting the support needs of all former ILF-recipients.

More than 1,200 former ILF recipients will now have their needs met through council funding, while 50 of them have requested an independent assessment of their new support package, a process being funded by the Welsh government following a campaign led by Davies over concerns about post-WILG support.

A Welsh government spokesperson said: “The Welsh Independent Living Grant was introduced as an interim measure to support people who received payments from the UK government’s Independent Living Fund which closed in 2015.

“Our new framework focuses on the future of independent living in Wales, and what Welsh government can do to support disabled people going forward.”

Davies said: “On the face of it the new framework that has been introduced by the Welsh government, following a lengthy consultation process, is as bemusing as it was when [the draft version] was originally launched last year.

“It seems as if I wasted my breath at two consultation days as many of the failings of the framework that I highlighted have failed to be addressed in a [document] that does not seem to address the needs of disabled people with high support needs.

“Social care does not seem to be addressed at all. This is an absolutely bizarre situation when discussing a framework supposedly designed to promote independent living for disabled people.

“Not one of the 55 actions in the action plan mentioned social care funding, which is extremely worrying.”

He added: “After achieving success with the #SaveWILG Campaign – where former ILF recipients have been offered the opportunity of an independent assessment if they disagreed with the decision of the local authority, all funded by the Welsh government – it was hoped that this would signal a change in attitude going forward.

“The dynamic brand of 21st century socialism introduced by first minister Mark Drakeford has delivered positive change that deserves to be recognised.”

But he said the new framework and action plan “seems like a major step backwards”.

He added: “It just seems that the socialist values that the Welsh government demonstrated with their reaction to the WILG campaign have not been utilised in the new framework.

“It does not sit well with me to criticise this new [document], but the fact that it seems to blatantly flaunt the UNCRPD article 19 is a major cause for concern.

“It would be very easy for me to ignore this as WILG recipients have now been protected, but as a disabled activist I remain vigilant to the needs of my disabled brothers and sisters across Wales.

“All disabled people with high support needs should be able to access adequate social care and I will not rest until justice prevails for those in need.”

Rhian Davies, chief executive of Disability Wales (DW), who led the national steering group on the framework, welcomed its publication, particularly “the renewed commitment to implementation of the [UNCRPD] and consideration of options to incorporate this and other UN treaties in Welsh law together with a stronger focus on the social model of disability and proposals to tackle the disability employment gap and support disabled people to take up positions in public life.”

But she added: “Some aspects of the action plan are stronger and more developed than others, often in those areas where disabled people have been closely involved in informing and influencing policy.

“With regard to social care, there appear to be relatively few initiatives cited in the action plan compared with other policy areas.

“Key issues raised during the consultation are omitted, including low take-up of direct payments, provision of advocacy services, WILG developments and the impact of austerity on social care as a whole.

“We understand that the action plan is a work in progress so DW will continue to press for these issues to be addressed, including through Welsh government’s Disability Equality Forum which plays a vital role in monitoring implementation of the framework.”

The Last Time? #SaveWILG

I received the following email to inform me that the Petitions Committee at the Senedd will be discussing my petition to Save the Welsh Independent Living Grant on Tuesday 17th September at 9.00.  This may be one of the final times that the petition is considered by the committee in question, considering how far we have come over the last seven months.

We are still waiting for our reassessments, but the end is in sight…

Nevertheless, I would still recommend that all those affected by WILG should tune in to the following:

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Dear Petitioner

Your petition will be considered at our next meeting on Tuesday 17 September at 9.00.

I enclose a link to the Agenda and Public Papers for your consideration:

http://www.senedd.assembly.wales/ieListDocuments.aspx?CId=430&MId=5650&Ver=4

A live broadcast of the meeting will be available on Senedd TV at:

http://www.senedd.tv/

Kind regards,

Petitions Committee 

The Final Furlong #SaveWILG

I am up to my neck in negotiations with my local authority over emergency payments for my depleted Direct Payments account. It has taken a beating over the past six months, as I have been using it to fund the 24/7 support that I so desperately need. I had saved quite a sum to be used in such a situation – it was always going to happen, due to the fact that I live with a progressive disability and had not been fully reassessed since 2010.

I am pleased to report that, having met with the Head of Adult Social Care, WCBC have agreed to make the relevant payments to ensure that I can continue to receive the support I need, at least until the end of my forthcoming WILG reassessment.

There is one thing that I would like to make clear to WCBC and all local authorities. One of the meetings I recently had with WCBC, through up the question of where the additional funds that I am now in desperate need of, would come from? I was shocked and disappointed that WCBC and a number of other local authorities, do not seem to grasp the fact that the #SaveWILG campaign that I led, resulted in the Welsh Government agreeing to fund any extra costs incurred. This was clearly outlined in a written statement on the future of WILG payments, made by the Deputy Minister for Health and Social Services, Julie Morgan on the 18th of July:

I would remind Members that the cost of these independent care assessments, and any additional support for people that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are consistent with supporting people’s agreed well-being outcomes.

It is important that all local authorities realise that Ministers have agreed to fund any increased care costs that may arise from the outcome of an independent assessment.

Even though the #SaveWILG campaign has been extremely critical of local authorities in Wales over the past four years when dealing with WILG recipients, we have actually assisted cash-strapped councils by reducing the amount they are expected to pay to support disabled people with high support needs across Wales.

WILG recipients and their supporters need to remember this fact, and hammer it home when confronted by adult social care professionals who do not keep up with the news, or realise just what an impact the #SaveWILG campaign has had. The Welsh Government has actually done something pretty special and deserve all the credit in the world. They have listened to our fears, read the evidence we collected and acted decisively. Sadly, there is little room for any positive news in the media at the moment, as we are all obsessed with the actions of a Conservative Muppet and the mess he is making of the BREXIT debacle.

All we need to do now, is remind all local authorities of the changes that have been introduced…

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Mile End #SaveWILG

I must begin by apologising for not updating my followers for a few weeks. I have been in battle – mode against my local authority who seem determined not to increase my package of social care, unless I undertake a health assessment that everyone can clearly see I don’t need. This has caused several sleepless nights, panic attacks, depression and exhaustion. I simply want to enjoy what is left of my life, but I am not being allowed to by the Council who preside over the town in which I was born, and have lived most of my life.

I have to be careful what I say, as there is plenty going on behind the scenes. I do not want to upset any of the staff who are employed by Wrexham CBC, and are merely following orders from above.

As I write, I am full of anxiety and have never felt so alone, even though I am surrounded by an army of supporters who are always on hand to steer me in the right direction. Unfortunately, these supporters cannot be with me around the clock and I am forced to spend frustrating hours on my own. I am full of energy and ideas, but this is agony as I need social support to communicate, wash, dress, eat, drink and do everything that most people take for granted.

There are a few ideas that I have come up with that I will be sharing over the next week or two, when the time is right. Those who know me, will be confident in the knowledge that I won’t be manipulated or threatened by anyone. For the time being, I just wanted to let everyone know that I am definitely still in the game and attempting to secure justice for myself and other disabled people with high support needs in Wales.

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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Disability News Service: Failure to extend ILF transition funding would be ‘another nail in coffin’ #SaveWILG

Following the positive news from the Welsh Government in providing an independent reassessment for WILG recipients should they be unhappy with the reassessment from local authorities, comes more uncertainty.

I had been looking forward to spending the rest of my life without having to worry about the ability to live my life independently. However, the following article by John Pring of Disability News Service, underlines the uncertainty that disabled people with high support needs face, due to fears that the buffoons in Westminster will fail to provide the vital grant that former ILF recipients need. 

I would like to ask those who have worked hard to protect recipients of the Welsh Independent Living Grant, if we will still be protected if the grant from Westminster fails to be continued?

Just when I thought I could relax…

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The government has failed to ease fears that it plans to scrap a vital grant that has been supporting former users of the Independent Living Fund (ILF) for more than three years.

The four-year Former ILF Recipient Grant was agreed in February 2016, with the government agreeing to provide £675 million over four years to local authorities in England.

The announcement of the grant was a significant victory for disabled activists, whose direct action protests had ensured that the plight of former ILF recipients remained a high-profile issue after the fund’s closure on 30 June 2015.

The recipient grant was not ring-fenced, so councils were not forced to spend it supporting former ILF-users, but it has allowed thousands of disabled people with high support needs to continue to live independently since ILF’s closure.

But disabled activists have now pointed out that the four years of funding is due to end next April, and there has been no mention by ministers of any extension to the grant.

And when Disability News Service contacted the Ministry of Housing, Communities and Local Government this week, it refused to say if an extension of the funding was being considered.

Instead, a spokesperson said: “The upcoming [cross-government] spending review will be our opportunity to look at funding for local authorities in the round and work is well underway to secure the resources and flexibilities councils need to deliver services for communities across the country.”

John Kelly, a former ILF-recipient and prominent campaigner, who lives in south-west London, said that any decision to end the grant would be “another nail in the coffin”.

He said: “I don’t want to be alarmist, but things are so awful at the moment that we could be saying goodbye to our rights to independent living, where the limited options on offer could be going back to living in care homes.

“Our predictions when ILF closed have all come true. We said it would be a postcode lottery. It is.

“We predicted the closure would be a drip, drip erosion of our ability and rights to an independent full life.

“We said that people’s packages may be cut. Some disabled people’s packages have been cut.

“We said local authorities wouldn’t be able to cope with applying the principles of independent living to our lives, because all they would be worried about was very basic care needs, because their budgets have been cut. That’s happening.

“We’re in a crisis. That’s not our words, that’s the directors of social services saying it.

“We knew local authorities wouldn’t be able to cope with the freedoms that ILF did give. Those freedoms are being threatened more and more.

“And we knew that ILF was working and those freedoms should have been given to more disabled people, not less.”

He added: “In the spending review, they must ensure that that money continues, but critically our rights to independent living must also be reconsidered, protected and actually furthered.

“My life is more than a one-hour call to make sure I am fed and watered.”

Ellen Clifford, a member of the national steering group of Disabled People Against Cuts, said the government had been “shamed” into providing the transition grant through the efforts of disabled activists.

One example was DPAC launching a direct action protest in the lobby of the House of Commons, days before ILF was due to close, with activists nearly succeeding in breaking into the main Commons chamber during prime minister’s questions.

But she said the transition funding provided by the government, including the four-year extension agreed in 2016, was never ring-fenced.

Clifford said: “Even before the ILF closed some local authorities started making dramatic cuts.

“It has been a complete postcode lottery from area to area.

“If the grant is ending, it will be a terrible blow to former ILF recipients whose local authorities have been protecting their support packages.

“We would be likely to see an even greater level of re-institutionalisation, neglect, denial of opportunity and dehumanisation of people with high support needs living in the community and a greater pressure to go into segregated institutions against their wishes.”

She called on disabled people and allies to support the Reclaiming Our Futures Alliance’s Independent Living for the Future campaign, which calls for a new national independent living service that would eliminate the postcode lottery in support, and finally make the right to independent living a reality.

ILF was originally funded by the Department for Work and Pensions, and when it closed on 30 June 2015 it was helping nearly 17,000 disabled people with the highest support needs to live independently.

But ministers decided it should be scrapped, promising instead that nine months’ worth of non-ring-fenced funding would be transferred to councils in England and to devolved governments in Wales and Scotland, to cover the period until April 2016.

It then agreed to extend that funding to English councils for another four years.

There were separate arrangements in Scotland and Wales.

Scotland set up its own Scottish Independent Living Fund on 1 July 2015, after the closure of the UK-wide ILF.

In Wales, a temporary replacement for ILF, the Welsh Independent Living Grant (WILG) scheme, ran from July 2015 but was due to close this spring and be replaced by a system of council-funded support.

But the closure was paused, after campaigning by disabled activists and allies, to allow all WILG recipients to request an independent reassessment of their new council support packages, with the Welsh government promising to fund the reassessments and any extra support they might need as a result.

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