Welsh Government

Disabled activist ‘is fighting for his life’ as he hands petition to Welsh government

THIS ARTICLE ORIGINALLY APPEARED ON THE DISABILITY NEWS SERVICE WEBSITE AND WAS WRITTEN BY JOHN PRING.

A disabled activist has handed in a petition of hundreds of signatures that calls on the Welsh government to reverse its decision to close its version of the Independent Living Fund (ILF).

Nathan Lee Davies (pictured) says he is fighting the decision to scrap the Welsh Independent Living Grant (WILG) because he is terrified of the prospect of his cash-strapped local authority taking over full responsibility for providing his care package.

He has been told that without WILG his own care package would be reduced from 86.5 hours to just 31 hours a week.

He says that such a cut would put an end to all his current community activities, including his involvement with Wrexham Glyndwr University, Wrexham football club, Disabled People Against Cuts, FDF Centre for Independent Living, and the Care and Social Services Inspectorate Wales.

He is also writing two books, and a blog, and is working with Disability Arts Cymru to create a performance and exhibition of his poetry.

He told Disability News Service (DNS): “I cannot cope with such a limited number of hours per week. This is why I am fighting with every fibre of my being.

“It really is a case of life or death. I have no interests in merely existing. I want to live.

“Without help and support I would be unable to do any of this work that involves me in the community.”

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

There will be no new Welsh ILF – even though such a scheme has been set up in Scotland – and no continuation of the interim WILG scheme the Welsh government has been running as a stopgap to “ensure continuity of payments to recipients” since the Department for Work and Pensions closed ILF in June 2015.

Funding for WILG will now transfer to local authorities during 2018-19, with all former ILF-recipients in Wales having their support needs met solely by their local authority by 31 March 2019.

Since the Welsh government’s announcement, Davies has been campaigning to persuade it to reverse the decision, including setting up the petition – which has now been signed by more than 500 people online and in person – and collecting photographs of supporters holding one of his campaign postcards.

He said: “The current system allows users the security of depending on receiving their funding from three different ‘pots’ – WILG, local authorities and our own personal contribution.

“This gives us a sense of security and ensures that we cannot be dictated to as mere passive recipients.

“Instead, all parties have to be in agreement about what will benefit the individual the most.

“This is something worth fighting for.”

But instead of this three-tier system, he said, the Welsh government had now “sold disabled people down the river.

“They are washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto local authorities.”

A Welsh government spokeswoman told DNS in a statement: “Organisations that represent disabled people who have been recipients of the Independent Living Fund, recommended that their future support would be best provided through local authority social care provision, with consistent arrangements in place to support disabled people in Wales.”

But Disability Wales, which was part of the stakeholder advisory group the Welsh government consulted, has made it clear to DNS that it did not support passing funding to local authorities.

The Welsh government added: “We would be surprised if Disability Wales were suggesting that certain disabled people in Wales should have their support needs met in a different way to other disabled people.”

Davies said he believed the Welsh government had listened only to the local authorities on the advisory group.

He has been supported by the north-east branch of the Labour left-wing grassroots campaign Momentum and the Unite union in Wales.

But he said he was disappointed that Disability Wales – the national association of disabled people’s organisations in Wales – had not supported his campaign.

Miranda Evans, policy and programmes manager for Disability Wales (DW), said they were not able to support the petition – which is critical of the Labour party in Wales – because it was too party political.

But she stressed that DW’s preferred option was for a new Welsh independent living scheme – a Welsh version of ILF – that would protect those currently receiving WILG funding and would also be open to new members.

DNS has seen DW’s response to an early consultation on the Welsh government’s plans, and it makes it clear that none of DW’s members or the other disabled people it had consulted about the future of WILG were in favour of handing the funding directly to local authorities, and had instead “expressed strong opposition” to this.

It also stressed that such an option was “totally unacceptable to existing ILF recipients, their carers and other disabled people”.

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Austerity policies have created a “human catastrophe” – UN Committee Chair condemns the UK’s record on human rights.

Deaf and Disabled People’s Organisations welcome the public unity of the UN Committee on the Rights of Persons with Disabilities in their clear criticism of the UK Government’s ‘grave and systematic violations’ of disabled people’s human rights.

Chairperson Theresia Degener in her closing questions stated, “Evidence before us now and in our Inquiry procedure as published in our 2016 report reveals that social cut policies has led to human catastrophe in your country, totally neglecting the vulnerable situation people with disabilities find themselves in.”

The Committee condemned the UK’s attempts to misrepresent the impact of policies through unanswered questions, misused statistics and a smoke screen of statements on policies and legislation which fail to implement the rights of disabled people in reality.

Committee member Coomaraval Pyaneandee said “[I] Want to see you come back as a world leader which at the moment, I’m afraid you are not, but DPOs I congratulate. [They] are in fact, the world leaders in your country.”

The UK Independent Mechanism further reinforced the concerns of DDPOs in their concluding statement which called for:

  • Gaps and inconsistencies in disability discrimination legislation to be addressed including the legal basis for British Sign Language
  • Steps to be taken to embed the CRPD in domestic law, maintaining the protections in the Human Rights Act
  • A coordinated approach to implementing the Convention and the Committee’s recommendations across the UK, with fully resourced and meaningful involvement of disabled people.

Tara Flood, Alliance for Inclusive Education and Reclaiming Our Futures Alliance said, “The UK’s track record on article 24 is not acceptable. The Chairperson made it clear and unequivocal that inclusive education is not a choice, it is a right. We are not surprised but always disappointed by UK Government’s lack of commitment to inclusive education for disabled children and their efforts to mask segregation.”

Devolved Nations also had the opportunity to address questions put to them by the Committee.

Patrick Malone, Disability Action Northern Ireland said, “It is not acceptable for the UK Government to hide behind lack of an Executive or Ministers for NI for the disparity of equality in legal protection for disabled people in Northern Ireland as compared to the rest of the UK. The Government must ensure that all of the disability provisions of the Equality Act 2010 are fully implemented in Northern Ireland as a matter of urgency.”

Rhian Davies, Disability Wales said, “We welcome Welsh Government’s commitment to a strengthened Framework for Action on Independent Living since much of the implementation of the UNCRPD is devolved to Welsh Government. However, as with the rest of the UK there is much more to be done in Wales in safeguarding disabled people’s human rights. This has been a historical week for the disabled people’s movement and one that we are proud to have played our part in.”

Sally Witcher, Inclusion Scotland said, “We wholeheartedly welcome the Committee’s comments on the UK. The government has not been allowed to get away with evasive responses which disregard the lived experiences of Deaf and Disabled people throughout the UK. We were disappointed that the opportunity was not available for Scottish Government to reply to all of the questions directed towards it, such as its plans to implement supported decision making for people with learning disabilities and how it will address the failings of the social care system. However, we anticipate opportunities to address these issues in response to the Committee’s concluding observations.”

Disability Wales calls out UK Government on human rights violations of disabled people

PRESS RELEASE

Disability Wales calls out UK Government on human rights violations of disabled people.

Disability Wales and Deaf and Disabled People’s Organisations (DDPOs) from across the UK join forces in Geneva this week, presenting evidence of ongoing human rights violations to the UN Committee on the Rights of Disabled People.

In a closed session on Monday 21st August, Disabled People’s Organisations will highlight the UK Government’s failure to respond to many of the questions put to it by the Committee throughout this process, and will tell the Committee of the systemic failure to support disabled people to live independently and to have access to social, educational and employment opportunities.

Key issues include:

  • The UK Government’s failure to answer the questions put to it by the UN Committee on the Rights of Disabled People in their List of Issues.
  • The retrogression in implementation of disabled people’s rights in the UK.
  • The UK Government’s dismissal of the 2016 Inquiry recommendations and lack of respect for implementing the range of human rights Conventions.

Disability Wales will also call for Welsh Government to strengthen its own approach to fulfilling its obligations under the CRDP. Recent engagement with disabled people across Wales regarding the review of the Framework for Action on Independent Living, confirmed that barriers to achieving disability rights and equality in Wales, remain firmly in place.

The Public Examination of the UK and devolved Governments will take place on Wednesday 23rd and Thursday 24th August.

This is the first time the Committee will review a State that it has previously had under Inquiry for violating the Convention on the Rights of Disabled People. Disability activists will draw attention to the UK Government’s dismissal of recommendations for action noted by the Inquiry.

Rhian Davies, Chief Executive of Disability Wales says: “Disabled people are being failed by the UK Government and we are in Geneva to call out these violations of our rights.

The recent Supreme Court ruling overturning Tribunal Fee charges is just one example of where discriminatory policies have been deemed unacceptable. There are many more policies that need throwing out in order to protect the rights and lives of disabled people and their families.

This is our opportunity to show that we will not stop challenging Government sanctioned discrimination and exclusion of disabled people in the UK.”

In a closed session with the Committee, DDPOs will be identifying issues that have the most severe impact on disabled people in the UK.

We will request that the Committee make recommendations to the UK and Welsh Governments on actions they should take to progress the rights, access and inclusion of disabled people in all areas of their lives.

Wendy Ashton, Chair of Disability Wales said, “The Examination gives disabled people a voice and shines a spotlight on decisions the Government has taken to marginalise us.

In Wales, devolution provides the opportunity to do things differently. It is essential that Welsh Government strengthen the role of the Framework for Action on Independent Living since there is no other overarching mechanism in Wales that outlines our rights.

We must make sure that a human rights based approach identifies and meets the needs of disabled people living in Wales and call upon Welsh Government to support us as we fight for a better future for all disabled people.”

 

Support from Ian Lucas MP #SaveWILG

I am pleased with how the #SaveWILG campaign is going so far as I’ve had plenty of media coverage, a good response to my postcard campaign, solidarity and support from Welsh Labour Grassroots and now I have had support from Ian Lucas MP, totally justifying the efforts I made to help him get re-elected in June.  He has written to Rebecca Evans AM to voice his concerns over the closure of WILG and to ask for a meeting between her good-self and recipients.  I have copied the letter below with permission from Ian Lucas.

This has made me think… If other people could write to their local MP and highlight the worrying WILG situation, then any further letters like the one below will only serve to increase the pressure on the Welsh Government and make them think twice about their decision to close WILG.  This would be great wherever you live as a letter from an MP outside of Wales would be just as effective.  Thanks for your support.

Anyway, here is the letter from Ian Lucas:

Rebecca Evans AM
Minister for Social Services and Public Health
Welsh Government
5th Floor
Tŷ Hywel
Cardiff Bay
CF99 1NA

14 August 2017

Our Ref: ZA19750

Dear Rebecca,

I am writing on behalf of a constituent, Mr Nathan Lee Davies who recently contacted me regarding the Welsh Government proposal to transfer administration of the Independent Living Fund to local authorities.

Nathan is a beneficiary of the fund with whom both Lesley Griffiths and I have worked over a number of years on disability issues. Nathan suffers from Friedreich’s ataxia, a disease that causes progressive damage to the nervous system. We have participated together in consultation events on ILF and discussed the fund with other recipients at consultation events, some of which were organised by the Welsh Government.

I am acutely aware that the UK Government has passed responsibility for the difficult decisions relating to the future of the ILF to the Welsh Government and I do not envy you the decision you have been asked to make. However, I am very concerned indeed, having discussed the issue in depth with Nathan, at the decision to transfer administration of the scheme to local authorities.

Neither of us believe that our Council has either the capacity or expertise to carry out this function and this decision is causing real concern to Nathan and other recipients of the scheme.

I would be very grateful if you would agree to meet with Nathan, me and other recipients of the scheme to discuss their concerns.

I look forward to hearing from you.

Yours sincerely,

Ian Lucas MP

 

Writing to local newspapers…

I have written the following letter to a number of local newspapers across Wales, urging the Welsh Government to reconsider their decision to close the Welsh Independent Living Grant (WILG).The campaign for justice continues…

If you wish to write a letter in support of this campaign, use the following emails:

This is the email that I fired off in the hope that people will read it and take notice of what is going on. It is worth a go.

 

I am writing as a recipient of the Welsh Independent Living Grant (WILG) and a disability activist who intends on asking Welsh Labour to reconsider their decision to close WILG as of April 2019. This payment was introduced to help people who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015.

WILG was due to run until the end of March 2017, but Social Services Minister Rebecca Evans said in November that funding would continue for another year.

The annual £27m fund will then transfer directly to local authorities during 2018-19 so they can meet the support needs of all former ILF recipients by 31 March 2019.

Something needs to be done as our disabled friends in England have suffered under a similar system that has seen local authorities being solely responsible for their care and support since 2015. This cannot be allowed to happen in Wales as well. Disabled people must organise themselves and demand to be listened to.

The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens who didn’t want WILG scrapped. The key point is that the advice of disabled people was ignored.

This is the time to fight back as Welsh Labour are basking in the glory of Jeremy Corbyn’s success in the recent General Election. The prevailing mood has changed and Welsh Labour have apparently made a significant shift to the left. Surely, Welsh Labour will want to distance themselves from a decision that mirrors the one made by the Tory Government in 2010?

It should also be remembered that closure of WILG is not inevitable as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF.

Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities. This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape?

They will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success – with no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure. 

Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision…

There are a number of ways that WILG recipients, family members and personal assistants can help to make a difference. Those concerned can sign the petition that has currently received almost 250 signatures, take part in the postcard campaign that is being orchestrated across social media and put pen to paper to their local AM. To find out more about these projects, please contact Nathan Lee Davies at nathandavies01@hotmail.com or search Facebook for the Save the Welsh Independent Living Grant (WILG) page. Twitter users can find me on @nathanleedavies or you can find all the information about this campaign on my blog at https://nathanleedavies.wordpress.com/

Thank you for your time.

Nathan Lee Davies, Wrexham

Briefing on the Welsh Independent Living Grant (WILG)

Briefing on the Welsh Independent Living Grant (WILG)

Background:

The Welsh Independent Living Grant (WILG) was introduced by Minister for Health and Social Services, Mark Drakeford AM to help people with high care and support needs who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in June 2015. More than 1,500 people are helped by the scheme across Wales.

The grant was only ever meant to be a short-term measure as Mark Drakeford wanted to give further thought to three longer-term options to identify which one might best deliver effective support, despite the difficult financial position.”

These options included the possible extension of current arrangements, a potential arrangement with the body set up in Scotland to provide payments to former ILF recipients there to do the same for Welsh recipients and, as in England, to transfer the funding to local authorities in Wales to bring ILF recipients within the arrangements for providing care and support set out under the Social Services and Well-being (Wales) Act 2014 for disabled people more generally.

Substantial time and money was spent on a consultation that overwhelmingly showed support for either a partnership with the Scottish ILF or a continuation of WILG – anything rather than distribute the funds solely to local authorities and end the reliability of three-way funding between government, local authority and personal contribution…

 

November 2016:

The new Minister for Health and Social Services, Rebecca Evans AM, decided that the £27 million-a-year provided by the UK government to support former ILF-users in Wales will be passed directly to councils.

There will be no new Welsh ILF – even though such a scheme has been set up in Scotland – and no continuation of the Welsh Independent Living Grant (WILG) scheme the Welsh government has been running as a stopgap since the fund closed in June 2015.

Instead, Evans said that funding for WILG would continue in its current form through 2017-18, but would transfer to local authorities during 2018-19. All former ILF-recipients will have their support needs met solely by their local authority by 31 March 2019.

In addition, the Welsh government has not yet made it clear whether the funding it will transfer to local authorities during 2018-19 will be ring-fenced for former ILF-recipients, or even for social care spending.

 

Why we oppose this decision: 

The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens. Disabled people, their families and support workers didn’t want WILG scrapped and the key point is that our advice was not accepted.​

It should also be remembered that closure of WILG is not inevitable, as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF.

Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities.

This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape?

Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision.

In a written statement in February 2016, Mark Drakeford AM said: “The level of recurrent funding being transferred to the Welsh Government from the UK Government to meet this responsibility is flat-lined at £27 million per year. This is sufficient to be able to maintain recipients’ payments at the same level as when the ILF was closed. There is, however, no scope to fund a change in a person’s needs or for any changes in the cost of the support they require. Neither does this transfer include any element for the administration or set-up costs associated with the arrangements to provide support we operate in Wales. Such costs would have to be top-sliced from the £27 million per year thereby reducing the level of the payments we were able to afford. As a result, this level of transfer greatly restricts the options we are able to consider for providing support to recipients in the longer term.”

To an extent, we sympathise with this situation and recognise that funding difficulties have their roots in Westminster. However, a strong government should provide for and protect those they represent, instead of washing their hands of responsibility of those in need while passing the buck to over-stretched local authorities and frittering millions on harebrained schemes such as north Wales metro. People should be prioritised over profit.

Welsh Labour will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success. At the moment, there is no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure.​

 

That was the week that was

What an eventful week.

To begin with, I must assure you – and anyone reading from Wrexham Council or the Welsh Government – that there has been the usual hours of struggle without care or support that has left me frustrated without being able to communicate while spending hours sitting in discomfort.  The fact that I have achieved so much is because I have a great team of support workers who have helped me excel DESPITE the shortage of social care hours of support that I receive.

On Sunday evening (July 16th) I went to see comedian/activist Mark Thomas at the Llangollen Fringe Festival.  After his enjoyable set, I was lucky enough to meet him and ask for his advice and support for my petition. He kindly agreed to Retweet information about my petition and within an hour I received an extra 22 signatories.  I have currently received 174 online signatures and have a healthy paper petition that is growing as we speak.

Thanks to Mark (pictured above) for his support and I look forward to seeing him in the not too distant future as I am interested in attending a gig of his on October 4 at theWaterside Arts Centre in Sale, Greater Manchester.

After a couple of humdrum days I then travelled to London on Wednesday  (July 19th) to take part in a Disabled People Against Cuts protest in the Houses of Parliament.  We managed to occupy the central lobby in the Houses of Parliament, which is used as the MPs entrance to the House of Commons.

The event was a huge success and received a great deal of media coverage as can be seen by following the links below:

http://news.sky.com/story/protesters-in-wheelchairs-block-mps-entrance-to-the-commons-10953908

People in wheelchairs block MPs’ entrance to House of Commons to protest against cuts

http://www.independent.co.uk/news/uk/politics/demonstrators-house-commons-pmqs-disability-cuts-protest-wheelchairs-parliament-entrance-block-a7848876.html

https://dpac.uk.net/2017/07/week-action-dpac-occupies-parliament-lobby-area-protest-cuts-social-care-funding/ 

https://www.thecanary.co/2017/07/19/corbyn-mays-final-pmqs-summer-nearly-shut-today-wont-see-bbc-video/

It was a great day and I really enjoyed taking on the establishment and making my voice heard. I also met up with my MP for Wrexham, Ian Lucas who has arranged a home visit with me next week.

Nathan Lee Davies and his Personal Assistant Tia Louise Wills.

 

It was also a special day for one of DPAC’s lead activists as Paula Peters celebrated her birthday. This was a chance for me to chat and mingle with some of the magnificent DPAC members who had travelled far and wide for the protest. There was also a surprise guest as John McDonnell turned up to give his best wishes to the remarkable Ms Peters. How many other politicians would give up their spare time to attend a birthday celebration for one of their supporters? Not many.

 

Vice Chancellor John McDonnell meets Nathan Lee Davies.

 

On Friday morning (July 21st) I was also chuffed to see that I was featured in the Wrexham Leader. I have been speaking to a journalist from the newspaper all week – in fact Mark Thomas actually suggested to the scribe that he should cover my story.  I was pleased with the finished article that can be seen below:

I think that I now deserve a break, but this is something I just cannot do. I will be a long time dead and there will be plenty of time to rest then. In the meantime, there is a fight to be won…