Disability News Service

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”.

Welsh government has ‘sold disabled people down the river’ on post-ILF plans

BY JOHN PRING – DISABILITY NEWS SERVICE

The ruling Labour government in Wales has been accused of “selling disabled people down the river”, after deciding that local authorities will be handed all financial responsibility for supporting former recipients of the Independent Living Fund (ILF).

The Welsh government has decided that, after a short transition period, 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, Rebecca Evans, the social services minister, said in a statement – following a public consultation and advice from a stakeholders group – 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.

The Welsh government has not yet decided 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.

Evans appeared to mirror the arguments of the UK government when it closed ILF last year, claiming that continuing under the present system would “provide support to former ILF recipients in a different way to which care and support would be provided to other disabled people in Wales”.

She added: “As a result I have concluded future support to former ILF recipients through normal social care provision from local authorities would be the most effective approach.”

But David*, a former ILF-user from Wales, said he felt “let down” by Evans’ decision.

He said it appeared that the Welsh government had “simply sold disabled people down the river by washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto irresponsible local authorities”.

He said he would now be at the mercy of his “heartless” local authority for provision of the care and support he needs.

He said: “This is not something I am confident about due to the fact that my social worker has already stated that without WILG I would face a reduction in my hours of care from more than 80 hours a week to a ridiculous 30 hours per week.

“I cannot cope with such a reduction as I am an active member of my community and like to think that I contribute positively to society.”

He said he was struggling to live independently because he had a progressive condition and already needed more support than he received.

He added: “I have been using all my time and energy to try to retain the hours I currently have and obtaining more seems like an impossible task.”

Disability Wales, the national, user-led organisation representing disabled people in Wales, had been pushing the Welsh government to create a Welsh ILF.

Rhian Davies (pictured), chief executive of Disability Wales, said Evans’ decision was a setback for the independent living movement in Wales.

She said ILF had been a “valuable resource” for many years for former recipients and had “supported their ability to live independently”.

She added: “The concern is whether that will be able to continue.”

She and David both said they were concerned that former ILF-users in Wales would now experience similar cuts to their support packages to those that have been seen in England.

Only last month, Channel 4 News reported that 80 per cent of councils in England had cut the care packages of some former ILF-users in the wake of its closure, while two-thirds had not ring-fenced the money given to them by central government.

Davies said: “Everything is pinned on the hopes that the new Social Services and Well-being (Wales) Act will lead to people being able to access a range of support in the community, but obviously that is a big ask in a climate of cuts in local authority services.

“Given the act only came in in April, it is not a lot of time to transform the way social services are delivered.”

David said he believed the Welsh government would “hide behind” the new act.

He said: “This is a highly-regarded piece of legislation that promises much if it is rolled out correctly.

“It would be great to live in a society which was co-productive and full of accessible, well-funded social enterprises to help me live independently.

“I won’t hold my breath, though, as for such an inclusive society to exist we need major investment into infrastructure and cultural changes to our disabled-unfriendly society.”

Asked whether the funding that will be passed to councils from 2018-19 would be ring-fenced for former ILF-recipients, or even for socal care, a Welsh government spokesman said: “As funding is not due to be transferred to local authorities until 2018-19, the exact basis of this will be subject to future discussion between the Welsh government and local authorities.

“Whatever the outcome at the point of transfer, local authorities will become responsible for providing the support that former ILF recipients in Wales require, and for meeting the cost of this.”

*Not his real name

Disabled people are ‘stronger and safer’ in EU, say leading academics

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Taken from Disability News Service

Written by John Pring

Leaving the European Union (EU) would put at risk significant improvements that have been made to the lives of disabled people over the last 15 years, according to three of the country’s leading academics working in the disability rights field.

In the strongest statement yet on why remaining in the EU would be the right choice for those concerned about disability rights, the trio say in a new document that disabled people would be “stronger and safer” inside the union.

In UK Disabled People and their Families – Stronger and Safer Inside the EU, the trio point to the “dramatic shift of emphasis” in EU disability policy from the mid-1990s, which saw a move “away from charity and welfare [and]toward equality and human rights”.

This shift in emphasis saw the introduction of the Employment Equality Directive 2000, which led in the UK to the removal of the original exemption in the Disability Discrimination Act (DDA) for employers with fewer than 20 staff, so that in 2004 “it became unlawful for all employers (and not just very big ones) to discriminate against disabled people”.

The employment directive also led to the DDA being changed to make direct discrimination by employers against disabled people unlawful.

And it led to the law in England, Scotland and Wales being altered to make it unlawful for employers to discriminate against carers.

On transport, the EU Air Passengers Regulation 2006 means transport operators have to assist disabled passengers travelling by air through the EU, with similar obligations for travel by train, ship, and buses and coaches, while there is also “mutual recognition” of disabled people’s parking badges across the EU.

And because of the EU Medicinal Products for Human Use Directive 2004, they say, packaging of medicines must include labelling in Braille.

The document was written by the disabled academic Professor Anna Lawson, director of the influential Centre for Disability Studies at the University of Leeds; Professor Gerard Quinn, director of the Centre for Disability Law and Policy at the National University of Ireland Galway; and Dr Hywel Ceri Jones, formerly co-chair of the European Consortium of Foundations on Human Rights and Disability, and a former director general for employment, social policy and industrial relations for the European Commission.

Among other benefits of membership, Lawson, Quinn and Jones point to the EU’s ratification of the UN disability convention, which means the EU now has to throw out or change laws and policies which do not comply with the treaty and has to “harness all its financial, legislative and other tools to benefit disabled people”.

The three academics also point to “exciting proposals” for new EU legislation that will benefit disabled people in the future.

These include the proposed Accessibility Act, which would ensure that manufacturers and suppliers of products such as computers, phones, ticketing machines and e-books would have to comply with new accessibility standards that would apply throughout the EU, while some service-providers would also have to comply with new accessibility standards.

The act would also ensure that EU and UK public sector money was “not spent on creating new barriers that lock disabled people out of the mainstream”, they say.

And the trio say that a proposed EU public sector website accessibility directive would force public sector providers of key services to ensure their sites were accessible.

They say that all European Commission proposals around disability follow consultations with disabled people’s organisations.

And they warn that leaving the EU would cause the UK’s disability movement to become “more detached from its European counterparts”.

They point out that the EU provides a platform for bringing together organisations that campaign for equality and human rights, including disabled people’s organisations, so they can “share innovative ideas about disability policy and practice”.

They conclude: “If we leave the EU, we will be cut off from these sources of fresh thinking. Neither will we be able to contribute to them.

“The end loser will undoubtedly be disabled people and their families – in the UK and also in the rest of Europe.”

The document has already secured the backing of leading disabled figures, including the crossbench peers Baroness [Jane] Campbell and Lord [Colin] Low; Diane Kingston, vice-chair of the UN committee on the rights of persons with disabilities; researcher and writer Jenny Morris, who helped write the Labour government’s Improving the Life Chances of Disabled People white paper; and Linda Burnip and Debbie Jolly, co-founders of Disabled People Against Cuts.

The co-authors of the document are now hoping to secure signatures from other supporters.

Disabled Tories launch investigation into impact of ILF closure

Below I have pasted an excellent article by John Pring of Disability News Service, which includes quotes from a certain Nathan Lee Davies 🙂

 

Disabled members of the Conservative party have launched their own investigation into the closure of the Independent Living Fund (ILF), following widespread concerns about its impact across the country.

The Conservative Disability Group (CDG) has issued an appeal to former ILF-users and those who had friends or relatives who were recipients of ILF funding to help with the research.

Disabled campaigners have accused the government of trying to “wash its hands of all responsibility” for meeting the social care support needs of former ILF-recipients, with the transition process hit by reports of cuts to their care packages.

ILF was 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 through DCLG to councils in England, and to devolved governments in Wales and Scotland.

CDG – which provides a forum for party members with an interest in disability to raise concerns and make suggestions that can be passed on to Tory MPs and councillors – plans to write a report to share with the minister for disabled people, Justin Tomlinson.

Wayne Henderson, a member of the CDG executive, has told members the project will examine how well the transition has been managed.

He has asked for evidence of how the process has worked in different parts of the country, whether there have been any problems, and whether people’s care packages have been protected by their local councils.

He told Disability News Service that it was CDG’s “first call for evidence in recent years” and that they were “using our limited resources to investigate one of the most current areas where there are reported problems in order to find out the facts”.

But he said it was too early to say if he or other CDG members were concerned about how the transition from ILF closure had been managed.

He said: “We are doing this because we have heard that the transition varies considerably from area to area and we want to get more facts to inform our consideration and thence to pass on information and suggestions to the parliamentary group.”

A spokeswoman for Inclusion London welcomed CDG’s decision to carry out the investigation, but said it was a surprise.

She said: “People haven’t felt listened to by the Conservative party. It shows that it is such an important issue that they are choosing to research in this area. It shows an awareness that the transition has not gone smoothly.”

A Conservative party spokesman said: “The CDG are an independent organisation, so it is up to them what research they choose to undertake.”

In October, figures obtained by Inclusion London through a freedom of information request showed that in one local authority, Waltham Forest, more than a quarter of disabled people who previously received ILF support had had their social care packages cut by at least half since it closed.

Meanwhile, the  Department for Communities and Local Government (DCLG) has finally confirmed – following weeks of requests for information from Disability News Service (DNS) – that it will provide some funding to councils to compensate them for the extra costs of providing support to former ILF-users in 2016-17.

DCLG had insisted that any grants to support councils with the costs of former ILF-users in 2016-17 would depend on the outcome of the government’s spending review, and later said it would provide details once last month’s local government finance settlement had been announced.

A DCLG spokeswoman has now finally told DNS: “Local councils are now responsible for meeting all of the eligible needs of former Independent Living Fund recipients.

“The government is committed to ensuring councils meet their duties under the Care Act 2014 to former fund recipients.

“We will be providing a grant to councils to fund former ILF recipients. Full details will be published in due course.”

Ellen Clifford, a member of the national steering group of Disabled People Against Cuts (DPAC), said: “I would be surprised – although delighted – if there really was continuation of the separate ILF grant determination.

“The delay in releasing this information means that local authorities will continue to plan ahead on the basis there won’t be, leading to re-assessments going ahead meanwhile on the basis of a need to cut costs.”

This week, DPAC issued an appeal for donations to set up a fighting fund to help former ILF-recipients challenge cuts to their care packages.

Clifford said that cuts to the extent of those seen in Waltham Forest “mean robbing disabled people of independence, dignity and equality”.

Changes to legal aid mean some former ILF-users are no longer eligible for help with their legal bills, but cannot afford to fund court action to challenge cuts to their care packages.

Clifford said: “Legal challenges are an important way of testing out the rights of former ILF recipients under the Care Act 2014 and making examples out of local authorities that are not meeting their legal duties.

“This is why we need a fighting fund available to support legal challenges by former ILF recipients not eligible for legal aid.”

Meanwhile, the Welsh government has confirmed, in an email to a former ILF-user, that it has allocated £27 million for 2016-17 to a fund it set up as a result of ILF’s closure.

The Welsh independent living grant (WILG) funding will ensure that former ILF-users continue to receive their existing level of financial support for social care until at least March 2017.

In the email sent to campaigner and former ILF-user Nathan Lee Davies, the first minister of Wales, Carwyn Jones, said the Welsh Labour government’s draft budget for 2016-17 “contains £27 million to enable the WILG to continue to March 2017 as planned”.

He added: “I understand that the minister for health and social services will shortly be engaging with representatives of stakeholders to identify the best way of providing support in future.

“This will be in the light of the public consultation held earlier this year. This is to ensure that future arrangements are in place for when the current grant concludes in 2017.”

Davies said on his blog that this response was “the best Christmas gift I could have asked for as now I have it in writing that WILG will continue to March 2017 as planned”.

He added: “I must keep my eye on the ball and continue to fight to secure long-term assurances for disabled people, but I can now forge forward with hope in my heart.”

A Welsh government spokesman said: “The UK government’s decision to close the ILF caused anxiety among those who receive support, and their carers.

“The Welsh grant scheme to replace the ILF came into operation on 1 July 2015. It allows local authorities to pay existing recipients their current level of funding.

“The actions the Welsh government has taken to ensure this important source of funding continues to be delivered by our local authorities means people who currently receive ILF payments will still be able to get direct payments to sustain their levels of care and support under a new made-in-Wales process.”

The Scottish government has set up its own Independent Living Fund, for both existing and new users in Scotland.

Picture: Activists campaigning to halt the closure of the Independent Living Fund taking part in a protest in the grounds of Westminster Abbey in 2014