First Minister Carwyn Jones

There’s No Other Way #SaveWILG

I have thought long and hard about posting this blog after an exhausting trip to Cardiff on Tuesday [June 5th] to meet with Ministers and discuss the future of the Welsh Independent Living Grant (WILG).

It was a very productive day, but one that resulted in much work still to be done along with a conscious effort on my behalf to review, renew and strengthen my aims and objectives for this campaign.

I had to start the day at 03:00 to venture down to Cardiff and meet the Petitions Committee at 10:00 in the Senedd. The committee are very much onside with the objective to save WILG , and Huw Irranca-Davies AM is due to give evidence in response on June 19th. Every minister on the committee is very supportive, and spent some time chatting to me, Adam and Angie following this meeting. A video of our meeting with the Petitions Committee can be viewed here. Our section on the meeting can be viewed after 1Hr 17Min.

We were full of positivity for our next meeting with the Minister for Children, Older People and Social Care, Huw Irranca-Davies AM, but he spent the first fifteen minutes on the defensive and stated why the Welsh Government would be “standing firm” on their commitment to scrap WILG, and pass all responsibility for social care to local authorities. We all chipped in, but Adam Samuels was particularly effective in getting his point across, leading to HID asking Adam to ” calm down”. I don’t think Huw liked being spoken to by a confident person who was in possession of some convincing arguments about money and neo-liberalism.

HID had to leave early to support Carwyn Jones answering First Minister questions. You would have thought Carwyn was big enough to face these questions alone, #justsaying.

We were then left speaking to Gareth Griffiths, the Special Policy Advisor to HID. This was a positive and constructive conversation. We appreciated his points and vice versa. There could be areas to work towards a special compromise here, as Mr Griffiths struck a pragmatic and concilliatory tone. He advised me to send him all of the information that we have at our disposal, which shows that local authorities do not have a clear grasp on the transition process. We will also be submitting evidence of individuals who have suffered dramatic cuts in their levels of care, and the success of other schemes such as the Scottish ILF.

This was followed by positive meetings with both Mark Drakeford AM and Julie Morgan AM. Now is the time to let the information gleaned from these meetings sink in, and wait to see what happens at the Petitions Committee meeting in a couple of weeks. However, anyone who knows me will realise that I am not built to remain silent, and action must be taken immediately, in an appropriate and decisive manner.

I have been lying awake most of the night, since returning from Cardiff and it was during these frustrating hours that I discovered what we must do. All talk of compromise should be rejected. We have been running a hugely successful campaign, that has gained much momentum. Now is the time to use the soft power we have collected, in a positive manner, and keep on campaigning. It is essential that we do so, because the fight to save WILG is vital to disability rights across the UK. We owe it to our friends in England and the 1,300 recipients [though this has gone down to 1,250 according to the latest figures quoted by the Welsh Government].

The fact that i qualify for extra hours of care and support is not something that i am particularly happy about, but it is a fact that i require extra help to get the most out of my limited life. My desire for extra care is not motivated by greed at all, simply NEED. I do not need or expect to see “every penny piece” of the £27 million given to the Welsh Government to provide full Social Care to former ILF recipients. I would gladly see a fraction of this money being spent on administration so that we had a independent social worker to turn to rather than complete reliance on local authorities.

Former ILF recipients who currently receive WILG, have already been through an assessment process to prove that they have a certain level of care and support needs to be eligible for special treatment. Why should this certainty be pulled from underneath them in a cruel and callous manner? 

HID keeps saying that 400 WILG recipients have already made the transfer to direct payment, and some of these have received more hours of care. They are still at the mercy of underfunded local authorities and even though the Welsh Government promised to keep an eye on this, I cannot see this happening once the transition period has ended.

I was worrying about all of this last night. At 3.00 I woke up needing the loo. I use a bottle beside my bed that I had already filled with urine before waking up again. I struggled for 30 minutes to pick up  my full urinal, with my spasticated hands, through fear of spillage. When I finally managed to move the urinal in to position, I had already lost some of the contents of my bladder  on to the mattress. I had to remain on my wet mattress until help arrived at 9.00am. Try telling me that I don’t deserve 24 hour care, something that my own social worker told me that I would have “no chance” of getting from Wrexham Council, as “no one in Wrexham gets that amount of care”.

I should also note that I do not believe that I am in a good mental place to be going through the stresses and strains of another social care reassessment. It is totally needless and uncalled for, but it could save Wrexham Council a few pennies and we must remember that they need to find some spare cash to give the councillors another pay rise, and the latest iPads. I shouldn’t really complain.

I don’t see why we can’t protect people with high care and support needs, by noting all of the problems in this transition period and extending it indefinitely for at least 1,250 people. We should also allow this scheme to be open to others with high care and support needs, who need the guarantee of adequate support that local authorities alone just cannot provide. After bringing the campaign so far, I have certainly got no intention of cosying up to Wrexham Council. Someone has got to put their neck on the line for the sake of disabled rights in the UK, it may as well be me. I want to show the authorities up for what they really are.

I would also ask, yet again, for full access again to the consultation papers that were sent out to recipients. The Welsh Government have previously tried to fob us off with a mere summary that they have produced. This is not what we are asking for as we are only to aware that a summary document can be edited to suit the views of the Government. It does appear that the consultation was not adequately considered and that a decision to scrap WILG had been made before the consultation process even started. It also seems highly unusual that no minutes exist from the stakeholder group meetings.

I am not asking for the moon on a stick, just the chance to play the game of life on a level playing field. In turn, this would give Welsh Labour the opportunity to create some positive PR [at a time when they need it], and show that politicians can show some humility and humanity.

The fight continues …

Open Letter to Welsh CLPs #SaveWILG


I am writing to you as a Labour Party member, Unite activist and disability rights campaigner to call on your support as we work together to Save the Welsh Independent Living Grant (WILG).

#SaveWILG OUTLINED

WAG is devolving the funds and responsibility for former Independent Living Fund (ILF) recipients to 22 local authorities.  Many of these authorities are not Labour controlled, many are already strapped for cash and the money that is due to be transferred hasn’t been ringfenced for the benefit of current WILG recipients…

Under the ILF, recipients received an independent third person who was involved in negotiating care packages along with the Local Authority.  This was a great source of support to people with high care and support needs and is something that needs to be re-established.  Sole reliance on local authorities is dangerous and lessons should be learned from England where funds have been distributed to local authorities since 2015 with disastrous effects.

The money from the WAG is a clear (transparent) amount specific to WILG recipients. However, it is currently planned for this money to be paid to local authorities under the Revenue Support Act and could therefore be subsumed into other projects while local authorities try to cut back on our specific care package provision.

Why should former WILG recipients have to fight for the care package they need, not simply to exist, but to be able to live a decent and fulfilled life?  This is an impossible task for the vast majority of recipients who live with conditions such as learning disabilities, cerebral palsy or Friedreich’s Ataxia.

The families of former WILG recipients will inevitably suffer as they will find themselves trying to fill the gaps in care provision not covered in the new “reduced” care package provided by the local authority.

Our care package is essential to our existence, it is not a privilege: Why would a civilised society put us through this misery? It is a human right to be treated fairly and equally with everyone else, so why are we being squeezed into this disadvantageous position by our own Labour government. They have got this wrong, but there is still time for them to revisit this decision and retain the WILG…

Motion 4 to save WILG was overwhelmingly passed at the Welsh Labour Conference in Llandudno during April 2018, but Minister for Children and Social Care Huw Irranca-Davies has since stated that he would not rethink the policy “in its entirety”. This has transformed the #SaveWILG campaign from a quest to protect independent living for vulnerable individuals to exactly that plus a fight to preserve Party Democracy. The will of our members MUST be listened to.

The Welsh Government tried to defend their actions by claiming they had acted in accordance to the instructions of a stakeholder group. I have spoken to several members of the advisory group who DID oppose LA provision. Surely, this calls into question the basis for the Minister’s decision. There’s been a total lack of imagination on the part of the Welsh Government in terms of creating an independent living plan that all local authorities must buy into. This would be a guarantee of ensuring equity across Wales

We are constantly being told that it is unfair that only a certain percentage of the population receive WILG and that this creates a two-tier system throughout Wales. I would suggest that the WAG should look to the fine example of ILF Scotland and roll out such a system to all disabled people with high care and support needs in Wales.

This motion has cross-party support with Plaid Cymru, and even UKIP & Conservative AMs lending support and fighting against this proposal. Welsh Deputy Leader candidate Julie Morgan AM also supports the campaign and has called for an “urgent enquiry” re scrapping WILG. We have had support from English MPs like Chris Williamson, many AMs, officials etc. The film director Ken Loach (pictured below) also supports the campaign, as do many other high-profile cultural figures like the poet & musician Atilla The Stockbroker, comedian & campaigner Mark Thomas, esteemed Welsh footballers like Joey Jones, Mickey Thomas, Wayne Phillips and so many more people from all sorts of backgrounds.

Support disabled people and their families 

WILG – Because we’re worth it

#SaveWILG

HOW YOU CAN HELP?

We are urging our comrades to get involved in the important campaign in a number of ways. Please see below how you can support our postcard campaign and spread memes across social media and email to raise awareness. There are also a number of campaigns being planned over the next few months and details will be posted on my blog.

The main people that we need to convince to change direction are First Minister Carwyn Jones, Minister for Children and Social Care Huw Irranca-Davies and all of the candidates in the Welsh Labour Leadership Election. The key emails are:

First Minister Carwyn Jones: Carwyn.Jones@gov.wales or Tweet @fmwales
Minister for Children and Social Care Huw Irranca-Davies: DS.MinCandSC@gov.wales or Tweet @huw4ogmore
Mark Drakeford AM: Mark.Drakeford@gov.wales or Tweet @wgcs_finance

Other emails will be published once we have a full list of candidates running in the meantime you can contact your local AM and anyone connected to the Welsh Government.

For more information please contact Nathan Lee Davies at nathandavies01@hotmail.com There is also a dedicated Facebook page to Save the Welsh Independent Living Grant and Twitter users should follow @nathanleedavies

Continue reading for further supporting evidence on why saving this grant is so crucial for 1,300 disabled people and the democratic future of the Party we all believe in.

Media Articles

Wales Live, BBC One Wales, 09/05/2018

Welsh Government under pressure over disabled grant

Disabled man continues fight for independent lives in Flintshire and Wrexham

This disabled man has lost half his care after Tories axed the Independent Living Fund

Welsh Government has ‘sold disabled people down the river’

Independent living grants: Disability campaigner fear cuts

Postcards

Take part in our postcard campaign in a number of ways. We would like to encourage people to print the image below and pose for a selfie while holding it to show your support and help raise awareness  of our campaign. You can share it on Facebook, Twitter, SnapChat or Instagram using #SaveWILG.

Alternatively, you can contact me for one of the 500 cards I have had printed with a special message to Children and Social Care Minister Huw Irranca-Davies. There are also cards to be sent to First Minister Carwyn Jones and blank cards that can be sent to the Leadership Candidates who must realise that if they want our support they must publicly support our campaign. You can also send these postcards to your local AM to encourage them to argue our case in the Senedd.

Memes

To be shared on social media or sent to your AM via email.

Button badges – Only £1

Wear one of our badges with pride to help raise awareness and raise much-needed funds to propel the campaign forward. Contact me to make a purchase and I will make sure the badges get to you quickly and safely.

Open letter to First Minister Carwyn Jones #SaveWILG

Following the BBC Wales Live programme last night, I took it upon myself to write an open letter to First Minister Carwyn Jones about the issues discussed.

If the Welsh Government think we are just going to go away quietly then they can think again…

***

National Assembly for Wales
Cardiff Bay
Cardiff
CF99 1NA

10 May 2018

Dear Carwyn Jones

WELSH INDEPENDENT LIVING GRANT

As you are aware, the Welsh Labour Party conference overwhelmingly passed a Clwyd South motion urging support for the Welsh Independent Living Grant (WILG). Support for that motion came from a very wide spectrum of Labour Party opinion including AMs, MPs, CLPs and Trade Unions.

I am writing to ask you to urgently encourage the Welsh Assembly to support the retention of the Welsh Independent Living Grant (WILG).

Freedom of Information requests to Local Authorities clearly show that there are real difficulties appearing in the transition process, highlighted in startling inconsistencies in 19 of the 22 responses received at the time of writing.

Passing responsibility for social care wholly onto the shoulders of confused and cash-strapped local councils will result in an unfair postcode lottery to mirror the appalling situation in England and drag Disability Rights back 30 years. It doesn’t have to be this way…

I have a real problem with the assertion by  the Minister for Children and Social Care that the stakeholder group were united in agreement with the closure of WILG and the transferring of funds to local authorities. This was quite simply not the case and I request that he should provide evidence in support of these claims.  Was a vote held in the stakeholder advisory group? If so, on what date, what was the result, and can the minutes of that meeting please be provided?

The members of the stakeholder group that I have spoken to have stated their frustrations with the whole process: “I disagreed with one side of the room almost continuously,“ and “I would be amazed to see minutes of a meeting where all participants agreed that passing this WILG over to the local authority beyond the ring-fenced period was the way forward.”  Others have said “I used to go home from all these stakeholder groups thinking we had agreed certain things to discover that was not what had been recorded.” and other activists argue that many officials and civil servants do not actually “know what Independent Living means – they still think ‘independent’ means managing without support”. 

It would greatly assist me in understanding Welsh Government’s decision making process on this issue if the minutes of all of the meetings of the stakeholder advisory group can be provided, and I will submit a Freedom of Information Act request if necessary.

Finally, I would specifically request a meeting with to discuss matters relating to the WILG and the future prospects of those who have benefitted from the WILG.

Yours sincerely

Nathan Lee Davies
Disabled Activist and Author
@nathanleedavies
https://www.facebook.com/SaveWILG/
https://nathanleedavies.wordpress.com/

Wales Live Coverage #SaveWILG

I have become a bit of a media star following my appearance on BBC One’s Wales Live programme that featured an item about the Welsh Independent Living Grant (WILG).

BBC Online article

Wales Live, BBC One Wales 22.30, 09/05/18

I was happy with the way that journalist Paul Martin investigated the issues that lie behind the decision to close WILG, but then I was not so happy that Huw Irranca-Davies (HID) had the opportunity to spread more untruths about the Welsh Governments decision being totally backed by the independent stakeholder group.

Following the programme, I was up until 2am writing open letters to both HID and First Minister Carwyn Jones which I will publish on this blog shortly.

I want to thank everyone for their support and I would like to remind potential leadership contender, HID that what I said on TV last night remains true.

This fight is far from over…

Activist celebrates after Welsh Labour backs independent living campaign #SaveWILG

Taken from an original article by John Pring on the Disability News Service website:

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A disabled activist who has campaigned to save the Welsh Independent Living Grant (WILG) is celebrating after the Welsh Labour annual conference voted to back his campaign.

Nathan Lee Davies has led a campaign to force the Labour-run Welsh government to reverse its decision to scrap the grant, which was introduced to support disabled people with high support needs in Wales to live independently after the UK government closed the Independent Living Fund in 2015.

An estimated 1,300 people in Wales receive support through the WILG scheme.

And this week, at their annual conference, members of Welsh Labour voted in favour of a motion that called on their government to maintain WILG, at least until the next Welsh assembly elections in 2021.

Before the vote, Davies had also secured support from Labour’s UK leader, Jeremy Corbyn, who posed for a picture holding one of the campaign’s “WHERE THERE’S A W.I.L.G. THERE’S A WAY” tee-shirts.

After the vote, Davies posted a blog in which he described his “emotional day” following a victory he said was “key for disabled rights across Wales and throughout the UK”.

He added: “We should all rejoice while remembering the fight is far from over as we need to ensure Welsh Labour listen to the will of their members.”

Davies has previously described his terror at the prospect of his cash-strapped local authority taking over full responsibility for providing his care package, having been told that without WILG his own care package would be reduced from 86.5 hours to just 31 hours a week.

He has described the campaign as a “life or death” fight.

He told Disability News Service yesterday (Wednesday) that the passing of the motion was “obviously the high point of our ever-growing campaign” but that it “does not mean that we have succeeded in securing WILG”.

He said: “We must continue with our campaign and ensure the Welsh government listen and act upon the wishes of their members.

“One thing is for sure, we won’t rest until we preserve and improve the Welsh Independent Living Grant.”

He thanked the cross-party and union support for his campaign – including the “wonderfully supportive” Clwyd constituency Labour party, which proposed the motion – and the other recipients of WILG.

He particularly praised members of Welsh Labour Grassroots – which represents the Momentum movement in Wales – who he said had “worked tirelessly to ensure independent living remains an option for those with high care and support needs”.

Davies is hoping that the Welsh government – which will have a new first minister in the autumn after Carwyn Jones announced that he would be standing down – will now reverse its decision to scrap WILG.

A spokeswoman for Welsh Labour said: “As with all motions passed at conference, this will now be considered by Welsh Labour’s policy process ahead of the next assembly elections.”

The Welsh government announced in 2016 that, after a two-year transition period, it would transfer all the £27 million-a-year provided by the UK government to support former ILF-users in Wales directly to councils.

It decided there would be no continuation of the interim WILG scheme it had been running as a stopgap since the Department for Work and Pensions closed ILF in June 2015, and would not set up a new Welsh ILF, even though such a scheme had been set up in Scotland.

All the £27 million-a-year funding is set to be transferred to Welsh local authorities this year, and they will be solely responsible for meeting the support needs of all former ILF-recipients by 31 March 2019.

The Welsh government’s new Social Services and Wellbeing Act is supposed to provide new rights for people to access a re-assessment of their support at any time, with local authorities under new legal duties to support independent living.

It believes that this is a more progressive system than the one operating in England.

But Davies has said previously that the decision to transfer the £27 million to councils and close WILG meant the Welsh government had “sold disabled people down the river” and was “washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto local authorities”.

Welsh Labour Conference 2018 #SaveWILG

There is so much to say about my first Welsh Labour Conference. I don’t have time to share everything that went on during this wonderful weekend as I have much to catch up with and organise for the next few busy weeks. Instead I will share a Facebook post that I added on Saturday night along with a collection of photographs taken by comrades during the weekend.

***

This was a hugely important conference for myself and all recipients of the Welsh Independent Living Grant due to Motion 4 that was proposed by Clwyd South CLP. The Motion read as follows:

Contemporary Resolution to Welsh Conference 2018

Clwyd South CLP

MOTION: TO DEFEND AND SAVE THE WELSH INDEPENDENT LIVING GRANT (WILG)

The Welsh Independent Living Grant (WILG) was introduced to help people who previously
claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015. More
than 1,500 people are helped by the WILG scheme across Wales and recipients all have a high
degree of care and support needs.

The WILG was due to run until the end of March 2017, but it has been agreed that funding
would continue for another year. The annual £27million fund will then transfer directly to local
authorities during 2018-19 so they can meet the support needs of all former ILF recipients by 31
March 2019.

This conference calls upon the Welsh Labour government to maintain the WILG, at least until
the next Welsh Assembly election, and to do so whilst retaining the following principles:

• Preservation of the triangular structure of the grant between the local authority, the
individual and a third-party stakeholder

• That the available funding should be ring-fenced in the future to ensure that allocated
monies are used for the purpose for which they are intended.

• That the well-being of disabled people should not be put at risk.

• That the most vulnerable people in society should be protected not endangered.

• That quality of life is a human right for our vulnerable individuals, rather than merely
maintaining existence.

The Welsh Labour Party to report back progress to conference 2019.

Following the proposal of this motion by my friend and comrade Angie Evans, the motion was supported by three other passionate delegates all of whom played a vital role ensuring that the proposal was passed convincingly. Cue celebrations.

The following post is from Facebook:

Saturday afternoon:

BOOM. What an emotional day at the Welsh Labour conference where Motion 4 was passed to #SaveWILG after comrades took the stage to praise a certain campaign and activist. However, this victory is not just mine but is key for disabled rights across Wales and throughout the UK. All my fellow campaigners should also take a bow – this wasn’t just a one man show. We should all rejoice while remembering the fight is far from over as we need to ensure Welsh Labour listen to the will of their members.

I propose a #SaveWILG celebration and review meeting next week. Have a drink for me tonight and sing ‘Ohhh Nathan Lee Davies‘ 

PS – Good riddance Carwyn…

[The following article first appeared on the excellent All too Human blog – After Carwyn Jones]

***

The important thing to remember is that the #SaveWILG campaign still continues as although we have won a key battle in our attempts to save WILG, The war to preserve independent living continues…

New Badges and Easter Memes #SaveWILG

I am pleased to announce that the new WILG badges have arrived and are plastered with our new slogan: Where there’s a WILG, there’s a way. I hope you will agree that the badges look really good and it is an excellent slogan dreamed up by myself and my PA when we were messing about with ideas.

These badges are available for £1 each with all profits going directly towards the #SaveWILG campaign. You can simply get in touch with me and I will be able to send you some in the post or deliver it in person at one of our many campaigning events that we have planned for the coming months.



We also have green badges available and these can be obtained along with the red badges for £1 each.


***

During the Easter period, we are encouraging people to share our newly produced memes across social media. In particular, we are targeting Welsh AM’s from all parties, but especially a few influential figures in Welsh Labour such as First Minister Carwyn Jones (@fmwales), Minister for Children and Social Care, Huw Irranca-Davies (@huw4ogmore) and Minister for Health and Social Services Vaughan Gething (@wgcs_health).

I have even written a tweet for you to copy and paste into Twitter and send to those suggested above. I can’t make it any easier for you. This will help you to do something positive over the long weekend and alleviate your guilt for stuffing your face with chocolate.

Suggested tweet:

@fmwales @huw4ogmore @wgcs_health Protect disabled people and their families #SaveWILG. 

You can also share on Facebook as all three AM’s have their own pages. If there are any other influential AM’s or Councillors that you can contact that would be great.