Wales

#GE2019: Standing Up for Wales

The following email is from Mark Drakeford to Welsh Labour members.  I wanted to share it here to show why I believe in this Party and have faith in them to deliver a brighter tomorrow for everyone in Wales.  They will also be in a stronger position to do this if they are able to work with a Labour Party in Westminster.

#VoteLabour2019 #JC4PM2019 #ChangeIsComing

***

4f0cbacc8b683e078d07d052017720df-rimg-w720-h408-gmir (1)

On Monday I unveiled our Welsh Labour manifesto. It is a bold plan for how the Welsh Labour Government will work side-by-side with a UK Labour Government, led by Jeremy Corbyn. It’s a plan that will deliver for each and every community across Wales. But we need your help on the doorstep to make sure we can deliver it.

Over the past few weeks, we’ve shown what our people-powered campaign can do. Thousands of Welsh Labour members have been pounding the streets of towns, villages and cities spreading our positive vision for Wales’ prosperous future under a UK Labour Government.

Unlike the Tories who rely on their big donors, our campaign is funded by the generosity of hundreds of thousands of individual people who want to bring about real change.

Our Welsh Labour manifesto works hand in hand with the UK Manifesto in helping us deliver for Wales like never before, including:

  • £3.4bn extra, each year to invest in schools, the NHS and local government.
  • A green industrial revolution, creating thousands of new green jobs.
  • A £10 living wage, for all workers aged 16 and over.
  • A final say on Brexit, where Welsh Labour will campaign unequivocally to remain.
  • A ban on zero hours contracts, giving people the security they need at work.
  • Extend free social care, supporting more people when it really matters.
  • Strengthened parental rights, by extending statutory maternity leave to 12 months and doubling paternity leave.
  • Scrap tuition fees, building on the best student support package in the UK.
  • An end to the Tories’ disastrous Universal Credit, no ifs, no buts.
  • Four new bank holidays, including a public holiday for St. David’s Day.

    I hope you’ll agree that this plan is a blueprint for the Wales that we all want to see.

    And with your help over these crucial final few weeks of the campaign, that’s the future we can have.

    Welsh Labour is the only party that is standing up for Wales.

    Let’s get out there and spread the word – see you on the Labour Doorstep!

    I look forward to seeing you on the campaign trail!

    Best wishes,
    Mark Drakeford AM
    Welsh Labour Leader & First Minister of Wales

Open Letter to Whom it May Concern

The following letter is written from the heart and broaches the difficult arena of disability and sexuality, which is a topic I will be focusing on over the coming months. I am excited to announce that I will be working with Dave Brown who is the Principal at The Centre for ICASA, the UK Sexual Healing Centre.

My issues will become clear to those who read this difficult-to-compose open letter, which is written with honesty and openness. Please be aware that this letter does touch upon adult themes though, as always, respect is at the centre of everything that I write.

Please note that the piece of art used below is Girl with Tear by Roy Lichtenstein. I do not hold copyright for this image and this image is not connected with my work in any way.

***

As well as living with Friedreich’s Ataxia, I am also locked in a struggle with two familiar bedfellows of this progressive genetic condition – loneliness and depression. These negative emotions are exasperated by the fact that I cannot fully function in the sexual game of life, despite being in possession of all the necessary equipment and having a healthy sex drive.

There are many reasons why I feel excluded from society. I discussed many of the limitations I feel in my latest book of poetry, Dancing on Thin Ice. I have included many of the poems below between paragraphs trying to explain, with respect at all times, the emotions and frustrations that I face.

I have not been fortunate enough to enjoy much success on the dating scene. The relationships I have had with the opposite sex have poisoned my mind and left me feeling that the ideal union is not attainable.

Fairytale Romance

She’s out there, somewhere

My angelic devotee.

A buxom beauty 

With cascading locks of hair

Residing with pigs that fly

I guess part of the problem is that my idea of the ideal union is far from conventional. I have experienced a conventional relationship in the past, got married, experienced the humdrum reality that people bizarrely seem to strive for. I thankfully found an escape route when my ex proved that her legs were more spreadable than Clover margarine. Suddenly, I was booted out of my stagnant position of a husband and free to build a life of my choosing.

Freedom is not much fun when you live with Friedreich’s Ataxia. There are so many different hurdles put in the way of true equality for those with only the slightest difference from the midstream masses. Ataxians face an arduous assault course full of hazardous pitfalls when aiming towards a level playing field, particularly when it comes to the dating scene.

For Your Entertainment

I am undateable

According to Channel Four

Look at the cute crips

Patronise at your leisure

While society stands still

In the ten years I have been divorced, I am proud of what I have achieved. I am the author of two books, I have been awarded an Honorary Fellowship for my work in Disability Rights by Glyndwr University and have led the successful #SaveWILG campaign to help protect independent living for those with high support needs in Wales. This is in addition to maintaining and designing my quirky bachelor pad and travelling across England and Wales. However, I remain unlucky and frustrated in my relations with the opposite sex.

Don’t get me wrong, I have plenty of female friends who are very important to me, but I am missing out on that special someone who I can become intimate with. To make this situation even more depressing I have been robbed of all dexterity due to the effects of FA. I shouldn’t have to paint a picture of the limits this means that I face. The options open to most men with regard to sexual release just aren’t there for me.

The most worrying aspect of this is to my general health. The following paragraph was taken from Reuters Health:

” Ejaculation frequency could be a sign of overall health. … (Reuters Health) – – Men who ejaculate often may have a lower risk of prostate cancer than their peers who don’t do it as frequently, a U.S. study suggests.”

So what is the solution? Every time I pluck up the courage to discuss the issue with the doctor I am fobbed off through sheer embarrassment. It is an area that people don’t feel comfortable discussing, but if it saves lives then it must be worth opening up about.

As I can’t do anything with my own, useless pair of hands then the obvious answer is to find someone with hands that would help. This is not an easy thing to do. I have been trying for ten years. I have had one or two successful arrangements that were fun while they lasted, but had no long term stability. Frustratingly, they also cost me a pretty penny. Oh to be desirable without financial incentive…

The problem is trying to achieve a perfect settlement whilst also making sure all parties maintain their dignity and self-respect. I have no desire to merely use a member of the opposite sex for my own sexual gratification. I much prefer to build a true friendship that has an intimate element to it. This sounds acceptable on paper, but in the real world it is extremely difficult to find. It is not as if you can approach someone in the supermarket and ask if they would be interested in a friendship whilst enquiring about the strength of their wrists.

Superficial Puzzle

Unrequited lust

Equals a half-empty bed

Desexualised

Hunting down the missing piece

Undesirable, alone

I can spend so much money on simply meeting a sexual need. Ejaculation is good for our physical and mental well-being, so I find it strange that it is not discussed more openly and seriously. Why do I feel so sleazy writing about something that will help my health? The simple fact is that I do not believe that I should have to fund something that I need to stay healthy.  If I lived in the Netherlands I believe I wouldn’t have to consider using my own money to fulfill a biological function.

The following link takes you to a page that explains all about sex care and how it works in the Netherlands. This should be read by everyone, without embarrassment. It is something that I would like to see established in the United Kingdom, but I know how difficult it will be for our antiquated, Victorian nation to follow the lead of a progressive, liberal country.

In the meantime, I will have to find the money from somewhere to keep myself in order. The only other cheap alternative I have at my disposal is phone sex. Over the years I have spent a small fortune on Premium Rate phone lines. This has only ground to a halt now that I receive 24/7 support and therefore do not feel comfortable indulging in sex chat while there is someone else in the room. I would not dream of putting any of my support workers in such an uncomfortable situation. However, this does not help me and my needs.

Hanging On The Telephone

Compulsive habit

Born out of pure loneliness

Premium phone calls

Cost money and dignity

Victim of the modern world?

I suppose I should be grateful that I am no longer running up huge phone bills after paying 51p per minute or something extortionate like that. It became an unhealthy compulsion that I didn’t even enjoy. After the show was over I would be left bemoaning the situation I found myself in and I would always end up apologising to the woman on the other end of the phone. They would always be puzzled about why I felt the need to apologise. I guess I am just a decent human being and I don’t like the idea of using anybody for my own sexual gratification. Unfortunately, needs must and no one was ever hurt or offended…

I am always aware that time is at a premium as I search for an unconventional partner in crime. The median age of death for people living with Friedreich’s Ataxia is 35. I am rapidly approaching my 43rd birthday. The closest I have come to finding the perfect match at the moment is through my relationship with my friend Robyn who I wrote the following Tanka about:

Wonder Woman

The  ideal union

A new woman in my life 

Plastic fantastic

Her perfectly formed figure

Mannequin in lingerie

Of course, I have a number of close female friends who I value and respect greatly. I am a good guy, therefore I also have the same amount of respect for their husbands and partners. Friendship comes easy to me, it is steering relationships down a more intimate avenue that I have difficulties with.

I think I have covered most of the bases in this article. There are so many stories that I could share about being “ghosted”  or the multiple times I have put myself in danger for the allure of trying to create an intimate situation through sex workers. I often get confused between love and sex, as it took me way too long to realise that neither of these mean anything without the other.

Square Peg, Round Hole

Attempting an impossible fit

Without wishing to look an utter tit

Will that spaz ever manage it?

Square peg, round hole

 

Acceptance is what we strive for

A level playing field, no more

Let me display my regular, everyday, humdrum core

Square peg, round hole

 

Accessibility would be a start

Open the barriers to superficial hearts

And be rewarded with love that won’t tear you apart

Square peg, round hole

 

Conformity with the masses is a must

Difference as sexy as a stale pie crust

Something, something that leads to lust

Square peg, round hole

 

Fed up already of this rhyming lark

Guess I ain’t no John Cooper Clarke

How the hell will I make my mark?

Square peg, round hole

 

Instead of copying another man’s style

I need to go the extra mile

Writing personally with added guile

Square peg, round hole

 

Breaking free from restrictions

While penning accurate descriptions

In free-form style – it’s what I need to do

Square peg, round hole

 

So I guess I’ll never fit

Into your confines, YOU utter tit

I’ll be myself – get used to it

Square peg, round fucking hole

This article is not an advert, but if you are in a position to offer solutions to the situation I find myself in then please feel free to contact me in private via nathanleedavies @ gmail.com

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.”

Welsh Labour Will Campaign to Remain

This morning I received an email from Mark Drakeford, the First Minister of Wales, outlining his party’s approach to the Brexit shenanigans. I thought I would share this below.

I have lots going on at the moment, as I am still waiting on my WILG assessment and am in the midst of a staffing crisis. My stress levels are through the roof, and I have decided not to attend the first session of the counselling course that I was due to begin tonight. However, I do not live in a bubble and I realise that this Brexit palaver needs to be put to bed as soon as possible, so that politicians can get to work on the multiple problems that have been ignored in the face of all this Euro nonsense.

I am not sure what exactly is my position on the Brexit debate. I just want to see the back to it all, but believe in Mark Drakeford and  his political acumen. Therefore, I am sharing his opinions.

*** 

Dear Nathan,

Given the dramatic and worrying events in Westminster recently, I thought this would be a good time to write to you personally to set out the Welsh Labour Party’s position on Brexit.

Welsh Labour believes that Wales’ best interests will only be served by remaining in the European Union.

We campaigned for a remain vote in the 2016 referendum and nothing we have seen or learned in the three years’ since has changed our minds.

Any type of Brexit – even the softest possible – will cause potentially irreparable damage to Wales and its economy. This is because Wales is heavily dependent on manufacturing and agri-food and 60% of our exports go straight to the EU.

We will support all the efforts our colleagues in Westminster are taking to prevent the no deal Brexit, which the Prime Minister and the Tory government is hell-bent on pursuing.

Labour has made an unequivocal commitment to put the Brexit decision back to the people.

In that referendum, we, as Welsh Labour, must and will campaign to remain in the EU.

Yours in solidarity,
Mark Drakeford AM
Welsh Labour Leader and First Minister

The Final Furlong #SaveWILG

I am up to my neck in negotiations with my local authority over emergency payments for my depleted Direct Payments account. It has taken a beating over the past six months, as I have been using it to fund the 24/7 support that I so desperately need. I had saved quite a sum to be used in such a situation – it was always going to happen, due to the fact that I live with a progressive disability and had not been fully reassessed since 2010.

I am pleased to report that, having met with the Head of Adult Social Care, WCBC have agreed to make the relevant payments to ensure that I can continue to receive the support I need, at least until the end of my forthcoming WILG reassessment.

There is one thing that I would like to make clear to WCBC and all local authorities. One of the meetings I recently had with WCBC, through up the question of where the additional funds that I am now in desperate need of, would come from? I was shocked and disappointed that WCBC and a number of other local authorities, do not seem to grasp the fact that the #SaveWILG campaign that I led, resulted in the Welsh Government agreeing to fund any extra costs incurred. This was clearly outlined in a written statement on the future of WILG payments, made by the Deputy Minister for Health and Social Services, Julie Morgan on the 18th of July:

I would remind Members that the cost of these independent care assessments, and any additional support for people that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are consistent with supporting people’s agreed well-being outcomes.

It is important that all local authorities realise that Ministers have agreed to fund any increased care costs that may arise from the outcome of an independent assessment.

Even though the #SaveWILG campaign has been extremely critical of local authorities in Wales over the past four years when dealing with WILG recipients, we have actually assisted cash-strapped councils by reducing the amount they are expected to pay to support disabled people with high support needs across Wales.

WILG recipients and their supporters need to remember this fact, and hammer it home when confronted by adult social care professionals who do not keep up with the news, or realise just what an impact the #SaveWILG campaign has had. The Welsh Government has actually done something pretty special and deserve all the credit in the world. They have listened to our fears, read the evidence we collected and acted decisively. Sadly, there is little room for any positive news in the media at the moment, as we are all obsessed with the actions of a Conservative Muppet and the mess he is making of the BREXIT debacle.

All we need to do now, is remind all local authorities of the changes that have been introduced…

WALESPOSTCARDFRONT001

 

Mile End #SaveWILG

I must begin by apologising for not updating my followers for a few weeks. I have been in battle – mode against my local authority who seem determined not to increase my package of social care, unless I undertake a health assessment that everyone can clearly see I don’t need. This has caused several sleepless nights, panic attacks, depression and exhaustion. I simply want to enjoy what is left of my life, but I am not being allowed to by the Council who preside over the town in which I was born, and have lived most of my life.

I have to be careful what I say, as there is plenty going on behind the scenes. I do not want to upset any of the staff who are employed by Wrexham CBC, and are merely following orders from above.

As I write, I am full of anxiety and have never felt so alone, even though I am surrounded by an army of supporters who are always on hand to steer me in the right direction. Unfortunately, these supporters cannot be with me around the clock and I am forced to spend frustrating hours on my own. I am full of energy and ideas, but this is agony as I need social support to communicate, wash, dress, eat, drink and do everything that most people take for granted.

There are a few ideas that I have come up with that I will be sharing over the next week or two, when the time is right. Those who know me, will be confident in the knowledge that I won’t be manipulated or threatened by anyone. For the time being, I just wanted to let everyone know that I am definitely still in the game and attempting to secure justice for myself and other disabled people with high support needs in Wales.

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

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

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

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

Just when I thought I could relax…

***

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)