WILG

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.

WALESPOSTCARDFRONT001

 

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…

***

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.

Image (4)

Written Statement by Julie Morgan AM #SaveWILG

I have just received this Written Statement by Julie Morgan AM, Deputy Minister for Health and Social Services. It is an update on the current situation regarding the Independent Care Assessments that the #SaveWILG Campaign insisted upon.

This is another positive step forward and it is encouraging that the end is now in sight…

***

TITLE: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments

DATE: 18 July 2019

BY: Julie Morgan AM, Deputy Minister for Health and Social Services

In February I announced a change of approach in the way that people who used to receive payments under the Welsh Independent Living Grant (WILG) were in future to access their support from their local authority’s social services. This is an update on the arrangements I am introducing.

It is paramount that people’s ability to live independently is not compromised by changes to the way their care and support is arranged and provided. It was for this reason that I decided that those people who used to receive payments under the WILG should have the opportunity of an independent care and support assessment if they are unhappy with the outcome of their local authority care and support assessment. Those assessments are being undertaken to agree with people the wellbeing outcomes they wish to achieve to live independently and to agree how these would be met.

While the majority of people who used to receive WILG payments are content with the care and support they are now receiving, where people are unhappy with the outcome of care assessment the ability to have an independent care assessment would provide for a second opinion. It also restores for them the tripartite decision making arrangement that existed under the Independent Living Fund (ILF) of recipient, independent ILF social worker and local authority social worker. This was something that the “#Save the WILG campaign” was very keen to have restored.

I am pleased to report that we have made good progress in putting in place the arrangements for these independent care assessments. I wrote in April to all former WILG recipients informing them of their ability to have an independent care assessment and explained my reasons for providing this opportunity. If people wanted an independent assessment, I asked them to contact their local authority by 14 June to request this, so we could gauge the level of interest. By that date 55 requests had been made across 14 local authorities. This is out of approaching 1,400 people in Wales who received payments from the WILG. This would seem to confirm our understanding that the vast majority of former WILG recipients are content with the outcome of the care assessment they had and the subsequent care and support they are receiving. However, it does also confirm that I was right to introduce this change of approach

for what is a significant number of people who have concerns about the outcome of their care assessment.

We have in addition completed a procurement exercise to secure an organisation to recruit and manage the independent social workers required to undertake these assessments. These social workers will be suitability qualified and experienced to perform this task, being registered as such on the relevant register maintained by Social Care Wales. They would consequently be well versed in the ethos and requirements of our Social Services and Well-being (Wales) Act 2014 and the regulations and code of practice we have made under this in relation to care assessments and meeting care needs. They would not, however, be employed by a local authority in Wales so as to maintain their independence.

Following evaluation of the bids received for this contract, ICS Assessment Services Ltd. has now been appointed to organise and undertake the independent care and support assessments requested. ICS has significant experience in both social care and undertaking assessments, having worked previously with a range of local authorities across Wales and England. Officials have met with representatives of ICS, the Association of Directors of Social Services Cymru and the Welsh Local Government Association, to agree the process that will be followed to complete the independent assessments and to work through the practicalities associated with this. This is well advanced so that the arrangements to begin to undertake ICS assessments should be in place by the end of this month. I will be writing shortly to those former WILG recipients who have requested an independent care and support assessment be update them in more detail on this and to confirm what they need to do to pursue their assessment.

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 wellbeing outcomes.

I appreciate that establishing these arrangements has taken some time. However, it is imperative that we put in place properly considered arrangements. The “#Save the WILG Campaign” has been supportive of the approach I am taking, as we share a common interest in seeing changes implemented properly.

I will update Members as further progress is made.

WALESPOSTCARDFRONT001

WLG/Momentum AGM #SaveWILG

At the weekend I travelled to the Welsh Labour Grassroots/Momentum AGM in Llandrindod Wells. It was a positive meeting that proved very productive. The opportunity to mix with fellow comrades from across Wales is always welcome as we attempt to build upon our strong Socialist foundations.

At the end of the meeting, I asked Adam Samuels – my first port of call whenever presented with challenges throughout the #SaveWILG campaign – to say a few words about the need to alert WILG recipients to the opportunity in front of them. After doing this, he passed me the microphone.

Since 2013 I have been noticing increased difficulties when speaking to large audiences. I tend to get very anxious and struggle to get my words out clearly while my chest tightens. In addition, as people listen to the verbal gems that can be heard beneath the increasingly slurred speech, I find that I have no control over my hands or arms. It is almost like an out of body experience, and very frightening. Friedreich’s Ataxia, mixed with general anxiety does not make a good combination…

Anyway, I must have been intelligible, as after waffling on for a couple of minutes my comrades were kind enough to give me a standing ovation. It was truly appreciated and meant the world to me to receive such a reaction from socialists I admire deeply. I had been talking about how the remarkable levels of support that I have received throughout the #SaveWILG campaign had kept me motivated and determined to succeed. I could not have continued to fight without the help and assistance that I received from others.

I really wish I had been able to soak up the ovation, rather than battling with my body in an attempt to remain conscious. It is a really scary situation but my genetic condition is obviously getting worse. Such health concerns were not present when I began the campaign, but the fight has taken so much out of me. This is why it is important that as many WILG recipients as possible, benefit from the opportunity to work with an independent social worker and ensure they are able to live the lives they choose based on what they actually need, rather than local authority budget restraints.

With the campaign drawing to a close – don’t get me wrong, I am still keeping my eye on the ball – I am wondering what to do next. I have several irons in the fire, but first of all I need to concentrate on my body to try to make sure I am around to help other campaigns for a good while yet.

 

Disability News Service: Appeal to hundreds across Wales to seek independent assessments of support needs #SaveWILG

The following article was written by John Pring and appears on the excellent Disability News Service website, which can be accessed by clicking here.

***

A disabled campaigner is encouraging hundreds of recipients of support through the Welsh Independent Living Grant (WILG) scheme to consider taking up the government’s offer of an independent re-assessment of their care package.

The Welsh government announced in February that it was pausing the closure of the WILG scheme – and its replacement with a system of council-funded support – following a campaign by disabled activists and allies.

Julie Morgan, the Welsh government’s deputy minister for health and social services, then wrote last month to all WILG recipients to tell them they could ask for a reassessment of their care package if they were unhappy with the outcome of their local authority’s assessment of their post-WILG needs or if that assessment had not yet taken place.

And she assured them that the Welsh government would pay for the independent assessment and any extra care and support they might need as a result.

Morgan has now written to Nathan Lee Davies, the WILG recipient who led the campaign to halt the closure of the scheme, updating him on the government’s progress.

She told him that only 26 WILG recipients had so far requested a re-assessment, across 10 local authorities.

Morgan said in her letter: “It is important that those people who wish to have an independent assessment are able to access it, but this is also in the context of the large number of people who we know are content with their new arrangements.”

Davies believes about 1,300 disabled people are eligible for a re-assessment, and fears that many WILG recipients are being held back from requesting a re-assessment.

He is now calling on all those WILG recipients who are not happy with their care and support package to ask for an independent assessment.

Davies, who has himself requested an independent assessment, said: “I started this campaign four years ago, after a social worker warned me that without the WILG my hours of support would be reduced from 86.5 hours a week to just 31 hours per week.

“I would be unable to maintain any quality of life without a substantial increase in my support and any reduction would leave me struggling to exist rather than living the life that I choose.

“The use of an independent social worker allows me to be assessed purely on my physical and mental needs.

“I feel that social workers from local authorities are under pressure from their managers to reduce costs, whatever the consequences.

“Assessments are therefore skewed from the outset and I fear that a number of WILG recipients are not receiving the support they deserve.

“Let’s not forget that all WILG recipients are disabled people with high support needs.

“This means that many need a strong network of people around them to give them the confidence to press for improvements.

“The fact that only 26 people have asked for a reassessment suggests that many WILG recipients are being held back by a combination of inertia, lack of support and advice and a sense of ‘better the devil you know’.

“I feel that an independent service will provide people with disabilities with greater security for the future.”

He added: “The government have listened to campaigners, reviewed the evidence and acted accordingly to ensure people get the support they deserve to live independently within their local communities.

“WILG recipients and their families need to investigate the opportunity that is in front of them to help ensure they have piece of mind for the long term future.”

WILG was set up – with UK government funding – as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.

The Welsh government is now closing WILG for good and transferring the funding to local councils, and by April the 22 local authorities were due to be solely responsible for meeting the support needs of all former ILF-recipients in Wales.

But Morgan announced the “change in direction” in February because a government review had shown a significant variation in how support packages were being cut by different councils.

IMG_0805-1

#SaveWILG Update: Letter from Julie Morgan

I received the following letter from the Deputy Minister for Health and Social Services to update me on the progress of WILG assessments.

It makes for interesting reading. I will be writing in response to this letter soon, but for now I think it is important to make sure that everyone is fully informed of their rights.

Thanks to Julie Morgan as ever for her sterling work in making the independent assessments, a reality.

*** 

Dear Nathan

Following my letter of 18th of April to former recipients of the Welsh Independent Living Grant (WILG) regarding their ability to have an independent care assessment, I thought I would provide you with a brief update.

All local authorities have now have confirmed that they have circulated my letter to their former WILG recipients.  Clearly people will need time to consider whether to have an independent assessment.   I have asked recipients to let their local authority know their intentions by 14th June.  To date, I understand that twenty-six former recipients have expressed an interest in having an independent assessment of their care needs.  These are spread across ten authorities.

This number may well increase over the next three weeks.  It is important that those people who wish to have an independent assessment are able to access it, but this is also in the context of the large number of people who we know are content with their new arrangements.

As regards to the sourcing [of] the independent assessments, the tender process is about to close.  The bids we receive will be evaluated against bidders’ ability to meet quality and timeliness criteria, including to ensure the appropriate standard of social workers for the assessments are recruited.  This is with a view to a contract being agreed in early June, with the practical arrangements being finalised during June, for the assessments themselves to commence from July.

I trust this is helpful.  Please feel free to communicate this information to your network of former WILG recipients.

Yours sincerely

Julie Morgan AM
Deputy Minister for Health and Social Services

WALESPOSTCARDFRONT001

BBC Report: Wales disability support cuts: Care to be re-assessed in July #SaveWILG

Elderly man in wheelchair

Re-assessments of severely disabled people unhappy with their care packages will not begin before July.

The Welsh Independent Living Grant has ended with councils funding care for more than 1,000 people receiving it.

In February, the Welsh Government announced anyone unhappy with their new council care package would be offered independent re-assessments.

Plaid Cymru said the wait was “way too long”. The Welsh Government has been asked to respond to the criticism.

In response to a Freedom of Information request, the Welsh Government told BBC Wales it has set aside up to £60,000 to pay an independent organisation to do the reassessments.

It anticipates the contract will be awarded by the end of June and re-assessments will begin in July.

£2.4m per year has also been budgeted, “for planning purposes”, to cover the potential costs of any increased packages.

157 people out of 1,174 assessed by their councils by the end of last year had had their support reduced.

There have been big regional variations, with cuts most common in Wrexham, Newport and Ceredigion.

Julie Morgan

The WILG was introduced in Wales to replace the UK-wide Independent Living Fund (ILF), which was closed down by the UK government in 2015.

In a letter to ex-WILG recipients, Deputy Minister for Social Services Julie Morgan said their “patience” would be appreciated.

“I do not want people to be waiting for an independent assessment,” she said.

“However, it is important to organise these independent assessments properly, so that they meet the required standards.”

Plaid Cymru’s social justice spokeswoman Leanne Wood questioned whether the reassessments were necessary.

“Initially many of these people were given an award for life and going through a reassessment process is extremely stressful,” she said.

“Particularly if you have a condition that everybody knows is not going to improve, it’s only going to deteriorate.

“So putting people through those reassessments is potentially problematic but at the same time this does need to be resolved quickly.”

‘Irresponsible’

Nathan Davies, a Labour member and founder of the Save WILG campaign, said the wait was “inconvenient” but criticised the previous Welsh Labour Government, led by Carwyn Jones, which made the initial decision to transfer the responsibility to councils.

“The fact that they [the current Welsh Government] are having to do this work now is because the previous neo-liberal regime did not listen to our campaign team and disregarded the evidence that we presented.

“The fact that we are having to endure an uncomfortable few months is totally down to them and a number of irresponsible local authorities.”

You can see more on this story on the BBC Wales Live programme at 22:30 BST on Wednesday BBC One Wales, and then on BBC iPlayer