Wales

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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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.

 

The People Must Make the Final Decision on Brexit

I am sharing the following email that I received as a Labour Party member, from our First Minister, Mark Drakeford. Throughout the email, Drakeford puts forward views that are necessary to get us out of the impossible situation that has been created by the Tories in Westminster.

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Dear Nathan,

I know that over the past few days you will have seen many reports in the press around Brexit and our Welsh Labour Government’s view on what should happen next. And I wanted to write to you directly to explain how our position has evolved.

Since 2016, when Wales voted – narrowly – to leave the European Union, the Welsh Government has argued for a form of Brexit which would, as far as possible, protect Welsh jobs and the Welsh economy. Our Labour colleagues in Westminster have done the same – most recently in negotiations with the UK Tory Government.

However, the collapse of the talks between Theresa May and Jeremy Corbyn and the current election for a new leader of the Conservative Party changes all that. The Tory leadership race is rapidly becoming a contest between harder and harder forms of Brexit – hugely increasing the very real danger of a no-deal Brexit that would be catastrophic for our nation. Recognising that, means we have to re-think how we approach Brexit in Wales. I believe the chance to do the sort of deal I have always advocated – a deal that would protect Welsh jobs and the Welsh economy – is now at an end. That is why my view, and the view of the Welsh Labour Government, is that going back to the people and asking them for their verdict is the best way forward. The final decision on Brexit must now be made by the public in a referendum. And, for the avoidance of any doubt, a Welsh Labour Government would campaign in such a vote for Wales to remain in the EU.

I am delighted that following last week’s election, Jackie Jones will sit in the European Parliament, and I know she will be a brilliant Welsh Labour MEP. But there is no hiding the fact that last week’s results were clearly deeply disappointing for our Party. Over the coming weeks and months, I want to take every opportunity to get out across Wales and hear from as many of you as possible. I know that many of you have passionate, differing, and sincerely held views, and I believe that the diversity of our membership is a strength, not a weakness. We are – and always have been – a broad church, but we are united by our belief in social justice and the firm conviction that we achieve more together than we do alone. In these turbulent and polarised times, it is more important than ever to remember that and act accordingly.

Best wishes,
Mark Drakeford
Welsh Labour Leader and First Minister

Statement from #SaveWILG Campaign at the #Right2IL Campaign launch

On April 25th, the #Right2IL Campaign was launched in Parliament. Unfortunately, I could not be there so I wrote the following which was read out by my good friend and comrade, Ellen Clifford.

Apparently, the message was well-received. I am looking forward to playing my part in the fight for the rights of disabled people to be recognised.

More about the #Right2IL campaign can be read here. 

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“Good afternoon to everyone and apologies that I cannot be present today. As a disability activist who has spent the last 4 years campaigning for the protection of independent living for former ILF recipients in Wales, I feel that it is important to contribute to the meeting. I believe that it is essential that disabled people in Wales are also represented in the creation of any independent living scheme that we campaigned for.

The Welsh Independent Living Grant was given to former ILF recipients as a temporary measure while future arrangements were discussed. In November 2016, the Welsh Government announced they would be scrapping the grant and transferring all funds to local authorities. This could not be allowed to happen and we have campaigned tirelessly and imaginatively to push the Welsh Government into making a u-turn. Independent Social Workers and extra funds have been promised by the Welsh Government to ensure former ILF recipients can remain in their local communities.

Even though the #SaveWILG campaign has been a success in protecting the rights of former ILF recipients, the Welsh Government are not planning to extend these rights to disabled people who missed out on the ILF. Our campaign has produced a positive result for approximately 1,300 of us, but this does not mean we can forget about those who never received the Welsh Independent Living Grant. We do not believe any disabled people with high support needs should be purely at the mercy of cash strapped local authorities. 

The tripartite system that the ILF established – between recipient, local authority and independent social worker – should be something that we all receive. I would welcome the opportunity to be part of the ROFA campaign and share the skills and tactics that we have built up during our successful campaign. Please do keep in touch and let me know  how the people of Wales can get involved. There may be a different legal system in Wales to contend with, but I believe that any Welsh Political Party – with the possible exception of Plaid Cymru – would welcome the opportunity to work with the UK Government to protect disabled people with high support needs.

My contact details are as follows:

Twitter: @nathanleedavies

Facebook: https://www.facebook.com/nathanleedavies

Website: https://nathanleedavies.wordpress.com/ 

Many thanks for allowing me to be part of your discussion and let us hope that this is the beginning of a new campaign that will result in justice for disabled people and their families. 

Solidarity to you all. 

Nathan”

A National Independent Living Support Service #Right2IL

The following article was taken from the Disabled People Against Cuts (DPAC) website and can be read in full by clicking here. 

The Reclaiming Our Futures Alliance, a network of  disabled people and our organisations in England, is asking for support for a bold new vision for independent living* for the future. (* The phrase ‘independent living’ is not about disabled people doing things on our own, it means having choice and control over our own lives, being included in the community and having the same chances to take part as other people.)

The social care and mental health systems are currently in crisis and as a result disabled people’s rights to an adequate standard of living, to dignity and inclusion and to equal participation in society are being taken backwards.

In its present state, the system is not fit to respond to current needs, let alone predicted greater needs in the future. Disabled people’s experiences of support are subject to a post code lottery and differ considerably depending upon impairment.

Disabled people and our organisations are calling for a better system guaranteeing consistent levels of adequate support. This will not only benefit us and our families but will strengthen wider society, save costs in other areas and produce social and economic benefits.

Our vision of a national independent living support system is set out in the position paper “Independent Living for the Future” which you can download above or below for the easy read version.

Please sign up in support using the form at the end of this page and help us reclaim disabled people’s futures by making our vision a reality. [The form is published on the DPAC website and can be found by clicking here]

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Download report here: NILSS_final

Sadly, I couldn’t attend Thursday’s meeting at the Houses of Parliament, but Ellen Clifford of DPAC kindly read out the following message on my behalf:

“Good afternoon to everyone and apologies that I cannot be present today. As a disability activist who has spent the last 4 years campaigning for the protection of independent living for former ILF recipients in Wales, I feel that it is important to contribute to the meeting. I believe that it is essential that disabled people in Wales are also represented in the creation of any independent living scheme that we campaigned for.
 

The Welsh Independent Living Grant was given to former ILF recipients as a temporary measure while future arrangements were discussed. In November 2016, the Welsh Government announced they would be scrapping the grant and transferring all funds to local authorities. This could not be allowed to happen and we have campaigned tirelessly and imaginatively to push the Welsh Government into making a u-turn. Independent Social Workers and extra funds have been promised by the Welsh Government to ensure former ILF recipients can remain in their local communities.

Even though the #SaveWILG campaign has been a success in protecting the rights of former ILF recipients, the Welsh Government are not planning to extend these rights to disabled people who missed out on the ILF. Our campaign has produced a positive result for approximately 1,300 of us, but this does not mean we can forget about those who never received the Welsh Independent Living Grant. We do not believe any disabled people with high support needs should be purely at the mercy of cash strapped local authorities. 

 

The tripartite system that the ILF established – between recipient, local authority and independent social worker – should be something that we all receive. I would welcome the opportunity to be part of the ROFA campaign and share the skills and tactics that we have built up during our successful campaign. Please do keep in touch and let me know  how the people of Wales can get involved. There may be a different legal system in Wales to contend with, but I believe that any Welsh Political Party would welcome the opportunity to work with the UK Government to protect disabled people with high support needs.

Many thanks for allowing me to be part of your discussion and let us hope that this is the beginning of a new campaign that will result in justice for disabled people and their families. 

 
 Solidarity to you all. 
 
Nathan”

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.

Wrexham man’s disability campaign will lead to thousands of lives being improved

The following article was taken from the Leader Live website. I am claiming no credit for writing this article which also appears in the Leader newspaper. 

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Improvements have been made to the way care is delivered for more than 1,000 disabled people in Wales to help ensure they get the support they need to live independent lives.

Local Assembly Member, Lesley Griffiths, has welcomed the Welsh Government’s latest announcement and congratulated Wrexham resident, Nathan Lee Davies, who headed a strong campaign and made representations to the Deputy Minister for Health & Social Services, Julie Morgan AM, on the matter.

Concerns regarding the Welsh Independent Living Grant (WILG) were initially raised when it was announced the responsibility for the scheme, which had been introduced after the abolition of the Independent Living Fund (ILF), was to be passed onto local authorities to manage from April this year. Nathan feared the changes would have a detrimental effect on his wellbeing and initiated the ‘Save WILG’ campaign.

The hard work has paid off as under the latest proposals, additional measures have been put in place to ensure nobody who was once in receipt of WILF, and its predecessor ILF, misses out as a result of the changes. An independent social work assessment will be offered to all former ILF recipients who are unhappy with their new care and support package and would like a second opinion.

The Welsh Government will provide additional funding to local authorities for the cost of the workers to carry out these independent assessments and additional care hours that may result from the assessments.

Lesley Griffiths AM said: “It was vitally important that people who previously received payments from the Welsh Independent Living Grant were not negatively affected by the transition. These latest measures will help ensure the new system is implemented properly, assuring levels of care and support throughout Wales are delivered consistently.”

“There’s no doubt the Save WILG campaign made a real difference. Having met with Nathan a number of times, it was always clear to see the extra stress and anxiety this was causing him. I am pleased to have helped facilitate the Minister’s meeting with Nathan in Wrexham and I hope all the individuals who feared they were going to be adversely affected are happy with the outcome.”

The £27m Welsh Independent Living Grant (WILG) was originally set up in 2015 following a decision by the UK coalition Government to close the Independent Living Fund.

Welsh Government consulted with partners to develop a long term strategy. A two-year transition period began in April 2017 in which all former ILF recipients in Wales who were now in receipt of payments under WILG would have their care needs assessed by their local authority to ensure a care plan was agreed and support package put in place.

While the transition period resulted in the majority of recipients being satisfied with the new arrangements, some former ILF recipients, who had not been subject to a care assessment since 2015, were concerned by the change in approach, with the reassessment causing tension in some cases.

The announcement by the Welsh Government aims to address the inconsistencies, with evidence suggesting the variation between local authorities warrants a change in direction and the Welsh Government has written to local government leaders to request a pause of the transition with immediate effect in order to bring in revised arrangements.