Disability News Service

If your life matters please email your MP

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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: CV-19 – Anger over ‘terrifying and discriminating’ intensive care guidance

The following article was taken from the excellent Disability News Service website, and written by John Pring. The original article can be viewed by clicking on this link. I recommend this site to all disabled people during the coronavirus crisis and beyond, as a dependable source of information. 

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New guidance for the NHS on which coronavirus patients should receive intensive care treatment has heightened fears among activists that many disabled people will be refused lifesaving treatment if they are admitted to hospital.

The guidance from the National Institute for Health and Care Excellence (NICE) says that all adult COVID19 patients should be assessed for “frailty” when admitted to hospital, and that “comorbidities and underlying health conditions” should be taken into account.

Following alarm and outrage from disabled people and allies, the government body announced late yesterday (Wednesday) that it had produced an updated guideline.

But the new version has not eased all those concerns, with one disability campaigner warning that disabled people who need support would still be less likely to receive critical care if the guideline was followed and one grassroots group of disabled people saying that it was “not reassured” by the amendments.

It was the use of the CFS “frailty” scoring system that caused most alarm, with the guideline suggesting that those with a score as low as five – those seen as “mildly frail”, who often need help with transportation, heavy housework and medication (nine represents someone who is terminally ill) – might not be considered appropriate for critical care and might be steered towards end-of-life care instead if their condition deteriorated.

The guideline said that decisions to admit patients for “critical care” should be based on how likely they were to recover.

Among those raising concerns about the original version of the new guidance was disabled actor and activist Liz Carr.

She said on Twitter that the guideline suggested she and many other disabled people would be “pretty much denied [the] same access to ventilation/critical care support as non-disabled people based on the fact we require some assistance in our daily life, because we’re disabled”.

She said this was “terrifying and discriminating”.

When NICE said it was “very aware of the concerns of some patient groups about access to critical care” and that it understood “how difficult this feels”, another disabled activist, Dennis Queen, told the organisation: “It’s not about how we feel –you are denying our human rights.

“We pay [the] same taxes for this disgraceful unequal treatment.”

Another disabled campaigner, Angela Kennedy, said on Twitter: “It’s more than ‘difficult’: it’s justified concern that discrimination against disabled people – because we need support, assistance and reasonable adjustment to live with our disablement – will drive unlawful decisions to refuse us a right to life. Your guidelines caused that.”

Greater Manchester Coalition of Disabled People told Disability News Service (DNS) last night (Wednesday) that it was “alarmed that the government – via the NICE guidance has confirmed that, when there’s competition for beds, the NHS will ration ICU care, so that many disabled people (especially elders) will be denied treatment, based on a scoring system.

“It’s also a much bigger group than those of us being told to protectively self-isolate.”

Mike Steel, from Bristol Reclaiming Independent Living (BRIL), said his grassroots group of disabled people was “highly concerned” about the NICE guideline, and the manner of its admission that the original version was flawed.

He said: “We have been shown with stark clarity the ease with which denying our most fundamental human right – the right to life –is normalised and reduced to being part of a ‘discussion’.

“We are not reassured by the amendment made to say that younger people and people with ‘stable long-term disabilities’ should not be assessed using the CFS, yet others can be.

“Categorising and dividing disabled and chronically ill people by age or personal care needs in order to decide who gets critical care is ableist and dangerous.

“The reality is, as a direct consequence of years of drastic cuts and a failure to plan by central government, frontline health staff will be put under immense and unfair pressure to make decisions about care.”

He said the guideline appeared to have been drawn up without the input of disabled people, and he added: “When we are excluded from decisions about our lives, not only are mistakes made, our very being is devalued.”

The concerns over the guideline came as more than 60 UN human rights experts, including Catalina Devandas Aguilar, the UN’s special rapporteur on the rights of persons with disabilities, warned in a statement* that action taken to cope with the COVID-19 crisis must address human rights issues and could not only be solved through public health and emergency measures.

They said: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government.

“The scarcity of resources… should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health.”

A disabled mother, who tweets at @Whovian242, told NICE on Twitter after the publication of the first version of its guideline: “This morning I read that according to these guidelines if I am assessed based on my care needs I won’t be eligible for critical care.

“With respect your comment ‘we understand how difficult this feels’ feels incredibly dismissive.”

Wheelchair dancer and consultant Shay Erlich added: “You have instituted a widespread tool and unleashed it for clinicians who will be making split second decisions in an overloaded system.

“Saying you have to take this advice in context in these circumstances only assures it won’t be.”

NICE said on Twitter that it accepted that the frailty scoring system was “not perfect” and so it recommended that doctors should “take any decisions about care in conjunction with patients and their carers where possible”.

It also said it welcomed clarification by the NHS Specialist Clinical Frailty Network (SCFN) that the frailty scoring system should not be used to assess certain groups, which it later said were “younger people, people with stable long-term disabilities, learning disabilities, autism or cerebral palsy”.

After publishing the updated guideline last night – following an update on using the CFS by SCFN – NICE said its new version included these clarifications and “the need to consider additional patient factors when interpreting the CFS score”.

The European Disability Forum (EDF), an umbrella organisation of disabled people across Europe, spoke out this week about reports of discriminatory medical guidance for the COVID-19 pandemic.

EDF said it was “extremely worried” about such reports coming from “some countries”.

It later told DNS that it had spoken out due to concerns raised by activists in the UK and other countries, including Sweden and Ireland.

It added: “In countries where healthcare professionals will not be able to provide the same level of care to everyone due to lack of equipment and underfunding of the healthcare sector, medical guidelines need to be non-discriminatory and follow international law and existing ethics guidelines for care in the event of disaster and emergencies.

“These are clear: persons with disabilities cannot be discriminated against.”

An EDF spokesperson added: “We believe that countries need to involve persons with disabilities and their organisations when writing these guidelines.”

Maureen Piggot, a member of EDF’s executive committee, said last night: “I welcome the clarification of the NICE guidelines, but it does not go far enough.

“The UK needs to follow the UN Convention on the Rights of Disabilities and explicitly ensure that there is no discrimination against persons with disabilities – this includes healthcare guidelines that provide equal access to life saving support.”

The Reclaiming Our Futures Alliance (ROFA) said this week that it was “deeply concerned” about the “eugenicist rhetoric that has been used to suggest that disabled people will have less access to medical treatment and equipment if they fall ill due to or during the pandemic”.

ROFA – whose members are all disabled people’s organisations and include Inclusion LondonDisabled People Against CutsThe Alliance for Inclusive EducationPeople First (Self Advocacy)Sisters of Frida and Equal Lives- called on the government to “ensure that disabled people are not discriminated against in the response to COVID-19”.

The NICE guidance added to concerns raised by last week’s DNS report about an NHS consultant who appeared to suggest in an open letter that he and his colleagues would not attempt to resuscitate many older and disabled people if they became seriously ill with coronavirus.

Cardiff and Vale University Health Board, which runs the hospital where the consultant works, has again refused to clarify his comments.

Instead, it issued a statement in which it said that every individual patient was different and that care plans “will depend on their individual circumstances where the most appropriate treatment will be offered based on their needs”, while it said the letter “was written to show the compassion and care NHS staff can offer during such a difficult period”.

*Here is the first part of the UN statement: “Everyone, without exception, has the right to life-saving interventions and this responsibility lies with the government. The scarcity of resources or the use of public or private insurance schemes should never be a justification to discriminate against certain groups of patients.

“Everybody has the right to health. People with disabilities, older persons, minority communities, indigenous peoples, internally displaced people, people affected by extreme poverty and living in overcrowded settings, people who live in residential institutions, people in detention, homeless people, migrants and refugees, people who use drugs, LGBT and gender diverse persons – these and other groups need to receive support from governments.

“Advances in biomedical sciences are very important to realize the right to health. But equally important are all human rights. The principles of non-discrimination, participation, empowerment and accountability need to be applied to all health-related policies.”

**Sources of information and support during the coronavirus pandemic include the following:

The Department of Health and Social Care

National Survivor User Network

Spinal Injuries Association

COVID Mutual Aid UK

Disability North

Disability Wales

Citizens Advice

 

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.”

Disability News Service: Labour ‘on collision course with UN and EHRC over independent living’

The following article has been written by John Pring and appears on his excellent Disability News Service website which can be found by clicking on this link.

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The Labour party is on a “collision course” with the equality and human rights watchdog and the United Nations because of its failure to accept the need for a legal right to independent living, according to a national network of disabled people’s organisations (DPOs).

The Reclaiming Our Futures Alliance (ROFA) has called on Labour to join the TUC in backing its proposals for a new National Independent Living Support Service (NILSS) that would give disabled people crucial new rights to free support.

A meeting of ROFA members and supporters from across England agreed on Friday on their priorities for winning support for NILSS.

Among those priorities was to push Labour to include the plans in its next general election manifesto.

There was also “contempt” at the meeting for the Conservative-led government’s continuing failure to publish its own much-delayed plans for solving the adult social care funding crisis.

ROFA’s demands for a NILSS were first set out in January, in the Independent Living for the Future document, and backing for the plan appears to be growing.

On Friday, the Trades Union Congress passed a motion – proposed by Sean McGovern, co-chair of TUC’s disabled workers’ committee – that calls on the next Labour government to establish a NILSS.

The motion had been passed by TUC’s annual Disabled Workers’ Conference in May.

Such a service, running alongside the NHS, would provide a universal right to independent living, with support provided free at the point of need, funded by general taxation, managed by central government, and delivered locally in co-production with disabled people.

Similar motions have been passed by local Labour branches, with the hope that the proposals will be debated on the floor of the party’s annual conference in Brighton from 21 September.

And the day after Friday’s meeting, ROFA member Andrew Day passed Jeremy Corbyn a letter, when the Labour leader visited him during a visit to Norwich, in which he asked him to meet ROFA to discuss the NILSS proposals.

Mark Harrison, a ROFA member who helped draw up the strategy and took part in Friday’s meeting, said the disabled people’s movement was united behind NILSS.

He said the idea could be “transformational” if it was adopted by Labour as part of its general election manifesto.

But he said he did not believe that the party’s shadow social care minister, Barbara Keeley, had engaged with representative DPOs on social care and the right to independent living, as the party should have been doing because of principles laid out in article four of the UN Convention on the Rights of Persons with Disabilities.

Labour disputed this and insisted that Keeley had not refused to meet with RoFA, and “regularly consults with a range of stakeholders, including people with lived experience, on social care policy development”.

Harrison said Labour’s current policies on social care were “pathetic” and “neither transformational nor socialist”.

He said Labour was currently on a “collision course” with the UN committee on the rights of persons with disabilities, which has called for the UK to introduce a legal right to independent living, and the Equality and Human Rights Commission, which has also backed such a move.

Although Labour’s 2017 general election manifesto (PDF) promised to sign the UN convention into UK law, the party has since shied away from promising a legal right to independent living, which is offered by article 19 of the treaty.

Harrison said ROFA would hold the Labour party’s “feet to the fire” over independent living.

He said: “This could be a flagship commitment of a new Labour government coming to power.”

He also said there was “complete contempt” for the government at Friday’s meeting over its failure to publish its plans for social care, and for its own failure to engage with representative organisations of disabled people.

He said “momentum was building” behind the NILSS idea, and he added: “That was the good thing about Friday: the momentum is building up and people are really on it, determined that we are not going to let this one go.

“The Labour party should not be waiting. It should be engaging with us now.”

A Labour party spokesperson said: “The proposals fall across a range of government policy areas, from work and pensions and health and social care to justice.

“They will be considered carefully as part of Labour’s policy development process.”

She added: “Labour is committed to addressing the crisis in social care.

“Our plans for a National Care Service will provide dignity in older age, and independence and support for people with disabilities.

“Our plans will ensure that social care receives the funding it needs, at a time when Tory austerity has created the national crisis in social care.”

The Department of Health and Social Care had failed to comment by noon today (Thursday).

Disability News Service: Failure to extend ILF transition funding would be ‘another nail in coffin’ #SaveWILG

Following the positive news from the Welsh Government in providing an independent reassessment for WILG recipients should they be unhappy with the reassessment from local authorities, comes more uncertainty.

I had been looking forward to spending the rest of my life without having to worry about the ability to live my life independently. However, the following article by John Pring of Disability News Service, underlines the uncertainty that disabled people with high support needs face, due to fears that the buffoons in Westminster will fail to provide the vital grant that former ILF recipients need. 

I would like to ask those who have worked hard to protect recipients of the Welsh Independent Living Grant, if we will still be protected if the grant from Westminster fails to be continued?

Just when I thought I could relax…

***

The government has failed to ease fears that it plans to scrap a vital grant that has been supporting former users of the Independent Living Fund (ILF) for more than three years.

The four-year Former ILF Recipient Grant was agreed in February 2016, with the government agreeing to provide £675 million over four years to local authorities in England.

The announcement of the grant was a significant victory for disabled activists, whose direct action protests had ensured that the plight of former ILF recipients remained a high-profile issue after the fund’s closure on 30 June 2015.

The recipient grant was not ring-fenced, so councils were not forced to spend it supporting former ILF-users, but it has allowed thousands of disabled people with high support needs to continue to live independently since ILF’s closure.

But disabled activists have now pointed out that the four years of funding is due to end next April, and there has been no mention by ministers of any extension to the grant.

And when Disability News Service contacted the Ministry of Housing, Communities and Local Government this week, it refused to say if an extension of the funding was being considered.

Instead, a spokesperson said: “The upcoming [cross-government] spending review will be our opportunity to look at funding for local authorities in the round and work is well underway to secure the resources and flexibilities councils need to deliver services for communities across the country.”

John Kelly, a former ILF-recipient and prominent campaigner, who lives in south-west London, said that any decision to end the grant would be “another nail in the coffin”.

He said: “I don’t want to be alarmist, but things are so awful at the moment that we could be saying goodbye to our rights to independent living, where the limited options on offer could be going back to living in care homes.

“Our predictions when ILF closed have all come true. We said it would be a postcode lottery. It is.

“We predicted the closure would be a drip, drip erosion of our ability and rights to an independent full life.

“We said that people’s packages may be cut. Some disabled people’s packages have been cut.

“We said local authorities wouldn’t be able to cope with applying the principles of independent living to our lives, because all they would be worried about was very basic care needs, because their budgets have been cut. That’s happening.

“We’re in a crisis. That’s not our words, that’s the directors of social services saying it.

“We knew local authorities wouldn’t be able to cope with the freedoms that ILF did give. Those freedoms are being threatened more and more.

“And we knew that ILF was working and those freedoms should have been given to more disabled people, not less.”

He added: “In the spending review, they must ensure that that money continues, but critically our rights to independent living must also be reconsidered, protected and actually furthered.

“My life is more than a one-hour call to make sure I am fed and watered.”

Ellen Clifford, a member of the national steering group of Disabled People Against Cuts, said the government had been “shamed” into providing the transition grant through the efforts of disabled activists.

One example was DPAC launching a direct action protest in the lobby of the House of Commons, days before ILF was due to close, with activists nearly succeeding in breaking into the main Commons chamber during prime minister’s questions.

But she said the transition funding provided by the government, including the four-year extension agreed in 2016, was never ring-fenced.

Clifford said: “Even before the ILF closed some local authorities started making dramatic cuts.

“It has been a complete postcode lottery from area to area.

“If the grant is ending, it will be a terrible blow to former ILF recipients whose local authorities have been protecting their support packages.

“We would be likely to see an even greater level of re-institutionalisation, neglect, denial of opportunity and dehumanisation of people with high support needs living in the community and a greater pressure to go into segregated institutions against their wishes.”

She called on disabled people and allies to support the Reclaiming Our Futures Alliance’s Independent Living for the Future campaign, which calls for a new national independent living service that would eliminate the postcode lottery in support, and finally make the right to independent living a reality.

ILF was originally funded by the Department for Work and Pensions, and when it closed on 30 June 2015 it was helping nearly 17,000 disabled people with the highest support needs to live independently.

But ministers decided it should be scrapped, promising instead that nine months’ worth of non-ring-fenced funding would be transferred to councils in England and to devolved governments in Wales and Scotland, to cover the period until April 2016.

It then agreed to extend that funding to English councils for another four years.

There were separate arrangements in Scotland and Wales.

Scotland set up its own Scottish Independent Living Fund on 1 July 2015, after the closure of the UK-wide ILF.

In Wales, a temporary replacement for ILF, the Welsh Independent Living Grant (WILG) scheme, ran from July 2015 but was due to close this spring and be replaced by a system of council-funded support.

But the closure was paused, after campaigning by disabled activists and allies, to allow all WILG recipients to request an independent reassessment of their new council support packages, with the Welsh government promising to fund the reassessments and any extra support they might need as a result.

Image (4)

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Disability News Service: ‘Delight’ over breakthrough on Welsh independent living scheme closure

The following article is taken from the Disability News Service website and was written by John Pring. I am taking no credit for the writing of this article and urge readers to visit the Disability News Service website. You can do so by clicking here. 

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Disabled campaigners have welcomed measures that aim to address concerns over the imminent closure of the Welsh government’s independent living grant scheme.

Julie Morgan, the deputy minister for health and social services, has written to council leaders to ask for an immediate “pause” in the closure programme and its replacement with a system of council-funded support.

There will now be new independent assessments for any former recipients of the Welsh Independent Living Grant (WILG) scheme who are unhappy with the new support packages allocated by their local authority.

The new measures came just two weeks after Nathan Lee Davies (pictured), who has led the campaign to save the WILG scheme, sent an 80-page dossier of evidence about the closure to Welsh Labour’s new leader and first minister, Mark Drakeford.

Davies told Drakeford in an open letter accompanying the dossier that closing WILG would leave disabled people with high support needs, like him, “at the mercy of cash-strapped Local Authorities who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow”.

He sent his letter with just two months to go until the interim WILG scheme was due to close.

Now Morgan has announced a pause in the transition to the new system.

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

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

But in a written statement to assembly members, Morgan said she had considered the evidence and decided there needed to be a “change in direction” because her government’s own review had shown a significant variation in how support packages were being cut by different councils.

Morgan said that all WILG recipients who were unhappy with their new care and support package and would like a second opinion would now be offered an independent assessment.

These assessments will be funded by the Welsh government, which will also pay for any resulting additional hours of support.

The government said that the new assessments would “acknowledge the historical entitlement of former ILF recipients”, while Morgan told assembly members in a written statement that there would be “no financial barrier [so]no-one need have less favourable care and support than they had under ILF”.

Morgan, who praised Davies and his fellow campaigners, said: “It is paramount that people’s ability to live independently is not compromised by changes to the care and support provided for people previously in receipt of the Welsh Independent Living Grant.

“These changes will ensure that is the case and deliver a consistent level of care and support across Wales.

“While the majority of former ILF recipients are receiving the same or more care as they were previously, a significant number have experienced a reduction in hours of support.

“There is also considerable variation in the reductions in support.

“I have therefore written to local government leaders to request a pause of the transition with immediate effect in order to bring in the revised arrangements.

“This is a significant change of approach that ensures that the needs of former WILG recipients will be fully met, and that resources are no barrier to a full package of care and support.”

Davies, who was celebrating his birthday on the day of the announcement, said it was “the perfect 42nd birthday gift”.

He said later in a statement: “I would like to place on record my delight at the breakthrough we have made.”

He added: “It is a pleasure to be working with our new first minister Mark Drakeford and his revamped cabinet that differs substantially from the previous regime.

“Welsh Labour have now successfully re-branded themselves and are moving forward with a clear vision of creating a society based on 21st century socialist ideas.

“There is still some work to be done with Welsh Labour on the new arrangements to support disabled people to live independently.

“I am confident that this work will be carried out constructively and add to the ‘clear red water’ that Welsh Labour are once again setting between themselves and Westminster.

“The fact that the party that I am proud to be a member of, has listened and acted appropriately is really encouraging and gives me hope for the future.”

Disability Wales praised Davies’s campaigning work and the Welsh government for “listening and responding to the evidence” and added: “This is really welcome news for Welsh disabled people who had lost vital support after the ILF closed.”