DNS

If your life matters please email your MP

***

In spite of a small climb down by NICE activists remain concerned that the lives of disabled people will be deemed to be of lesser value than those of non-disabled people in the event of rationing of equipment needed to treat Corona Virus. Many older and disabled people in various locations around the country have already received letters from GPs asking them to sign DNR and DNAR forms. In a few cases even when people have refused to do so GPss have issued these as unfortunately doctors can have the last say about not resucitating you and over rule your wishes.

If you value your own lives we are asking you to email your MPs urgently and a template letter is below. You may also wish to look at the Not Dead Yet website     Not Dead Yet UK: Call to Action  http://notdeadyetuk.org/covid-19-a-call-to-action/

Template Letter

<Add your name and postcode >

<Add Date>

Dear <Add name of your  MP – find your at https://www.writetothem.com/ >

I am writing to you, as my MP, to ask you to protect the rights and lives of Disabled people.

Since Covid-19 (Coronavirus) has started to spread, there are stories in the news that are very worrying. Some doctors have been sending groups of Disabled people ‘Do Not Resuscitate’ forms to sign (1). This has happened even though the NHS says that doctors must talk to people first.

I am worried that some people think Disabled people are not worth the same as other people (2) I’m also worried that Disabled people might not get:

  • a choice about signing these forms;
  • life-saving care, if they become really ill with Coronavirus;
  • help and support to understand what is happening with care.

This would be against NHS rules, the Human Rights Act and Equality Act.

I do not agree that doctors should be made to use ‘frailty scales’ (3) to decide who does, or does not, get treatment for Coronavirus. Hospital doctors can already decide if a treatment will be good for a patient, and decide the best way to use medicines and equipment.

Although the advice has been changed (4) to say ‘frailty scales’ should not be used for some Disabled people, they can be for others, so it is still discrimination.

Everyone has equal value, whatever our age, health or disability.

I know that this is a very difficult time for the NHS, but it is not Disabled people’s fault that health services have had their funding cut. It’s not our fault that services don’t have enough equipment.

Please support Disabled people and write to:

Matt Hancock, Minister for Health and Social Care

Simon Stevens Chief Executive NHS

Ian Dalton, Chief Executive, NHS Improvement.

Please ask them to:

  • Get rid of the NICE guidance about the ‘Clinical Fraility Scale.’
  • Support Disabled people to have a choice about their treatment.
  • Protect people’s rights under the Human Rights Act and Equality Act.
  • Work with Disabled people and Human Rights groups when deciding on rules and advice about Coronavirus.

I look forward to hearing from you about their responses. Thank you.

Yours sincerely

<Add your name>

References:

(1) CQC condemns ‘do not resuscitate’ notices on care plans

(2) ‘Who’s Life Counts?’ British Institute of Human Rights

https://www.bihr.org.uk/blog/the-fight-against-covid-19-whose-life-counts

(3) ‘The Clinical Frailty Scale is not suitable for use with people with learning disabilities’ – Nursing Times

(4) ‘NICE updates rapid COVID-19 guideline on critical care’

https://www.nice.org.uk/news/article/nice-updates-rapid-covid-19-guideline-on-critical-care 

Please also read:

‘Coronavirus: Anger over ‘terrifying and discriminating’ intensive care guidance’ – Disability News Service

Coronavirus: Anger over ‘terrifying and discriminating’ intensive care guidance

Not Dead Yet UK: Call to Action

COVID-19 – A call to action

 

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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”.

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