Cardiff

We need people power to save the Welsh Independent Living Grant #SaveWILG

ARTICLE TAKEN FROM MORNING STAR

CAMPAIGN OF THE WEEK

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CARE for disabled people who live on their own was jeopardised by the Tories in 2015 when they scrapped the Independent Living Fund (ILF).

The scheme helped people who had both day and night care needs and who were getting the high rate care component of Disability Living Allowance.

In England, the funds were given directly to local authorities, but in Wales, Scotland and Northern Ireland the money was transferred to the devolved governments.

Scotland and Northern Ireland set up their own ILF systems and Wales created the Welsh Independent Living Grant (WILG) as an interim measure while a consultation took place.

In November 2016, the Welsh government announced that it would be closing WILG and giving the money directly to local authorities through the Revenue Support Grant.

Save the Welsh Independent Living Grant’s (SaveWILG) Nathan Lee Davies says it means the money will not be “ring-fenced” and is concerned that councils can spend the money “in whatever way they choose,” meaning disabled people’s needs could be overlooked.

“As a recipient, I do not believe that all the options were seriously considered,” he says.

“Disabled people and their families have been let down by the Welsh government who cannot be allowed to wash their hands of their responsibility to some of the most vulnerable people in our society.

“WILG is a grant that needs improvement, but we are hoping to save it in order to preserve the remnants of the ILF.”

The campaign group, as titled, aims to save the WILG and allow disabled people with high care and support needs to live the lives that they choose with adequate support.

Davies says: “It is important that we keep hold of the triangular system that was so successful during the ILF years when packages of care were designed in between recipients, local authorities and independent organisations.

“The final care package could be only be agreed and finalised when all three parties were in agreement.

“Disabled people cannot afford to depend on cash-cutting local authorities. Once we have ensured the future of WILG our next steps would be to improve it.”

SaveWILG began with a petition and by handing out postcards to members of the public to pose with.

“We managed to get a postcard photo with Ken Loach and comedian Mark Thomas,” says Davies.

“I have been writing letters to the petitions committee at the Welsh Assembly and we recently won a motion at the Welsh Labour conference in Llandudno to save WILG.

Unfortunately, AM Huw Irranca-Davies announced that the Welsh government would not be changing its policy following the conference, which Davies says “ignores the will” of members and unions.

The original motion started off at the Wrexham branch of Unite and soon SaveWILG also won the support of Unison.

“The fact that we won the vote so convincingly suggests that other unions also supported us, despite the Welsh executive committee asking Clwyd South to retract the motion,” Davies says.

Davies is working closely with Welsh Labour Grassroots and receives support from the People’s Assembly and Left Unity.

“It was a great day, but we must guard against complacency and finish the job we have started,” he adds.

“The fact that we managed to meet Jeremy Corbyn at conference and get a photograph of him holding a ‘Where there’s a WILG, there’s a way T-shirt’ was also a highlight.”

The campaign is still ongoing and Davies says that he has learnt that “people power” can really make a difference.

He says: “We have a wealth of future events planned, such as protests and marches, and on June 5 we are going to the Senedd to give evidence to the petitions committee.

“We will continue to put pressure on the Welsh government until there is independent living and disability rights.”

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 …

Thunderclap Latest #SaveWILG

https://www.thunderclap.it/projects/70260-savewilg

Thank you everyone for your continued support. This morning I am pleased to note that we have reached 107 supporters with a total social media reach of 66,869. Your support means the world to me and the other 1,300 recipients of the Welsh Independent Living Grant. Let us use this Sunday to build on the momentum we have created and pushed our impressive figures even higher. Please badger family and friends to get involved in the Thunderclap as it will really make a difference if I am able to say to Ministers at our meetings on Tuesday that our message to #SaveWILG is having a total Social Media reach of over 100K 🙂 The Welsh Government do not like any adverse publicity but it is our job to keep them in check. If anyone has any ideas about how to increase the popularity of this Thunderclap further still please get in touch. Once again many thanks and I hope everyone has a nice Sunday xx

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According to Wikipedia, Thunderclap is a platform that lets individuals and companies rally people together to spread a message. The site uses a model similar to crowdfunding sites such as Kickstarter, in that if the campaign does not meet its desired number of supporters in the given time frame, the organizer receives none of the donations. This is referred to as “crowdspeaking”, as Thunderclap and its rival site Daycause use the same terminology. [2][3] Backers are required to copy the original message in tweets or social media posts.[4]

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Please find below an important Thunderclap that we should all get involved in to help #SaveWILG.

This is a vital and easy way for  people to get involved with the campaign. Please encourage everyone you know, to take part and spread the message that we all want to save WILG, and deserve to have our voices heard.

The more pressure we can put on the Welsh Government, the better. On June 5th, when the thunderclap is activated, I will  be in Cardiff  at the Senedd, meeting with the Petitions Committee, Minister for Children, Older People and Social Care, Huw Irranca-Davies, Mark Drakeford AM and Julie Morgan AM.

We want to flood social media, and hope you will be able to spare one minute to help us achieve this aim. If this action succeeds, there will be future thunderclaps held.

Unfortunately, Thunderclap no longer allows targeted messages to prevent individual accounts being bombarded unfairly.

The message that will be shared across Twitter and Facebook reads as follows:

Welsh Labour need  to listen to their members and Save WILG for those with high care and support needs across Wales.

Anyone wishing to add memes or postcard photos to their social media accounts, can find plenty via my website or by simply contacting me via the contact page or on social media. I can’t make it much easier for you 😊

Many thanks for your support, and please do not hesitate to click on the following link:

https://www.thunderclap.it/projects/70260-savewilg

The Early Bird Catches the Worm #SaveWILG

On June 5th, I am going down to Cardiff with 2 of my comrades to try to find out what on earth is going on with the Welsh Independent Living Grant. We have a number of meetings lined up with Petitions Committee, Huw Irranca-Davies, Mark Drakeford and Julie Morgan.

It will be a punishing day that is due to begin at 4am, The things we have to do to ensure justice and equality is maintained in these oppressive right-wing times…

If you want to watch me and my comrades in action next Tuesday, you can do so via the Senedd TV website.The link is included in the email below.

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Dear Petitioner

Your petition will be considered at our next meeting on Tuesday 5 June at 9.00am.

 I enclose a link to the Agenda and Public Papers for your consideration:

 http://senedd.assembly.wales/ieListDocuments.aspx?CId=430&MId=4757&Ver=4

 A live broadcast of the meeting will be available on Senedd TV at:

 http://www.senedd.tv/

 Kind regards,

Team Support Officer – Petitions Committee

Help needed on Twitter #SaveWILG

I am requesting help on Twitter to get the message across to Assembly Members across Wales that there is still time to reverse the awful decision to close WILG and transfer all responsibilities for Independent Living to local authorities.

A list of AM Twitter handles can be found below along with a suggested Tweet and electronic postcards and memes that can be attached to Tweets for greater impact. Even if you only manage to Tweet a handful of AMs, this could make a real difference to disabled people across Wales.

Thanks for your support.

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SUGGESTED TWEETS:

Disabled ppl with high care and support needs are in search of your support to maintain Independent Living for all. Are Welsh Labour planning on listening to the democratic wishes of their members

Disabled ppl with high care and support needs are in search of your support to maintain Independent Living for all. #SaveWILG

Wales voted Labour. Don’t copy Tory policy and damage independent living 4 disabled ppl. WHAT USE IS A TRANSITION PERIOD IF OVERWHELMING EVIDENCE AND A DEMOCRATIC VOTE IS NOT ENOUGH FOR A GOVERNMENTAL RE-THINK?

Wales voted Labour. Don’t copy Tory policy and damage independent living 4 disabled ppl #SaveWILG

This is the impact of closing the ILF in England  https://www.gov.uk/government/publications/independent-living-fund-post-closure-review #SaveWILG

Welsh Labour: Don’t copy Tories in Westminster. Protect independent living 4 disabled ppl #SaveWILG

These Tweets should be accompanied by some of the many postcard photographs, electronic postcards and memes.

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David Melding @DavidMeldingAM

Lynne Neagle @lynne_neagle

Gareth Bennett AC/AM @GarethBennettAM

David Rowlands AC/AMVerified account @DavidRowlandsAM

Hefin David AC/AM @hef4caerphilly

Caroline Jones AC/AM @carolineUKIP

Dr Dai Lloyd AC/AM @DaiLloydAM

Carl Sargeant AM @Carl4AandD Michelle Brown AM @MishBrownAM

Carwyn Jones AM/ACVerified account @AMCarwyn

Joyce Watson AM @JoyceWatsonam

Nathan GillVerified account @NathanGillMEP

Neil Hamilton AC/AMVerified account @NeilUKIP

John Griffiths AM @JGriffithsLab

Vikki Howells AM @VikkiHowells

Ann Jones AM @ann_jonesam

David Rees @DavidReesAM

Neil McEvoy AM @neiljmcevoy

Ken Skates AMVerified account @KenSkatesAM

Dafydd Elis-Thomas @ElisThomasD

MickAntoniw AM @MickAntoniw1

Jayne Bryant AM @JBryantWales

Mike Hedges @MikeHedgesAM

Julie James AMVerified account @JulieJamesAM

Rebecca Evans AMVerified account @RebeccaEvansAM

Eluned Morgan @Eluned_Morgan

JaneHutt AMVerified account @JaneHutt

Rhianon Passmore @rhi4islwyn

Elin Jones @ElinCeredigion

Vaughan Gething AMVerified account @vaughangething

Mark Drakeford AMVerified account @MarkDrakeford

Mark Isherwood AMVerified account @MarkIsherwoodAM

Angela Burns @AngelaBurnsAM

Mohammad Asghar AMVerified account @MohammadAsghar

Lesley GriffithsVerified account @lesley4wrexham

Nick RamsayVerified account @NickRamsayAM

Andrew RT DaviesVerified account @AndrewRTDavies

Simon ThomasVerified account @SimonThomasAC

Huw Irranca-DaviesAMVerified account @huw4ogmore

Russell George AMVerified account @russ_george

Rhun ap IorwerthVerified account @RhunapIorwerth

Julie MorganVerified account @JulieMorganLAB

Sian Gwenllian AC/AM @siangwenfelin

Janet Finch-SaundersVerified account @JFinchSaunders

Lee Waters AMVerified account @Amanwy

Alun DaviesVerified account @AlunDaviesAM

Jeremy Miles AC/AMVerified account @Jeremy_Miles

Jenny Rathbone AMVerified account @JennyRathbone

Mark Reckless AMVerified account @MarkReckless

Dawn Bowden AM @Dawn_Bowden

Llyr Gruffydd AC/AM @LlyrGruffydd

suzy daviesVerified account @suzydaviesam

Darren Millar AMVerified account @DarrenMillarAM

Steffan LewisVerified account @steffanlewis

Adam PriceVerified account @Adamprice

Hannah Blythyn AM @hannahblythyn

Kirsty WilliamsVerified account @Kirsty_Williams

LeanneWoodVerified account @LeanneWood

Bethan Maeve AM/ACVerified account @bethanjenkins

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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…

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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/

Response to Minister for Children and Social Care from Sheila Meadows OBE #SaveWILG

I have shared a letter below written by my friend and comrade Sheila Meadows OBE who started the fight to support disabled people with high care and support needs long before I appeared on the scene. Together we have been fighting for disabled people’s rights for over five years now.

She is responding to the letter I received from Huw Irranca-Davies last week. This can be viewed in full here.

I will write my own response to this letter shortly, but I doubt that I will be able to add much more than Sheila has already said. The following letter encapsulates all that we have been trying to get across, but the folk at Welsh Labour seem to lack the humanity and humility to listen and admit that they will need to revise their plans to close WILG before it is too late…

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Dear Mr Irranca-Davies

Thank you for your letter to Nathan Lee Davies. I will respond on a few points which I hope will contribute to the discussion and I ask you to respond to the final point so important in our discussions, but not addressed in your reply.  I refer to the triangulation we spoke at length about – the need for a third independent person or group with power who can mediate between the Local Authorities and recipients should this prove necessary.

You Wrote: …”separate public consultations held in 2014 – one for recipients and the third sector, and another for local authorities on the principle of four potential options for future support arrangements for former recipients of the Independent Living Fund (ILF). I would like to assure you this was not the case. Only one consultation was held with all the responses considered together.”

What we raised was that the analysis of the responses from recipient, third party organisations, etc. and LG were considered separately. Social Services responses indicated their desire to run the future ILF. This was supported by Welsh Government.

You Wrote: …”As Sheila may recollect as a member of the stakeholder group who advised Welsh Government, when the detail of how a resulting shortlist of options could be implemented that option was indeed considered further.”

Yes it was discussed further and the views of the SS representatives and LA were supported over the voice of the recipient.  I used to travel back form Cardiff feeling that I and the voluntary organisations had been able to convince the civil servants and others understand the problems we would face if the funding and decisions were left to our Local Authorities alone. The SSWB act, all assured me, would protect WILG recipients to live independently.   I was not then and have still to be convinced.

You Wrote: …”In addition many were concerned that the increased numbers of disabled people in Wales, who local authorities could claim funding for from the scheme, would result in the threshold to access this system having to be set at a very high level in order to make the scheme affordable.”

It is interesting that you highlight this particular issue as this was about the only issue we all agreed on, but not in the form you recall it.  As social services in the local area must fund or ensure the support of all disabled people who qualify for services, then it was seen by the whole group as fairer across Wales to have a higher threshold set. All agreed that the threshold was too low and would need to be raised considerably, but all felt this would be fair. 

  • When someone required a very large package of care the LA  could turn to a central source for financial support
  • It would also prevent local authorities ‘upping’ the cost of care provision to qualify for the enhanced payment which we know was done to attract ILF when central government ran it.
  • It was also seen as making it an ’All Wales standard’ of eligibility for enhanced care packages for those with the greatest disabilities.
  •  It would also have brought in one of the most important elements, someone/group, who would sit outside Local Government to monitor and mediate and ensure fairness across all authorities. 

Which brings me to my final comment; Nathan and I tried very hard to explain the importance of the ILF social worker in assessments and provision. They would hold LA to account if they were not fulfilling their agreed part in the contract and would also be equally determined that what the recipient or appointee had agreed was also being carried through.  Now if LA decide on a plan for you or in my case my son and I don’t agree, who do I turn to?  If my son is likely to suffer physically or mentally because of a decision, then I can complain but to whom?  To the LA?  How can it be possible to complain to someone about themselves and expect a reasonable outcome? Both Nathan and I thought we had explained this issue very fully with Mathew Hall, Head of Policy Division, but this issue is totally ignored in your letter. Once again, I am faced with the same issues, we have meetings, think the Civil Servants have listened and heard, but find the issues which they don’t fully understand, or unable to find a solution are  totally ignored.  I can understand that you don’t agree with my view but I feel there is a need to respond to the most important issue brought to the meeting.  We called it the ‘Black Hole’

The need for an independent third person is vital. After your visit we did get the letter you sent to Wrexham in November, thank you, it arrived in the middle of February!  Without your direct intervention would this have happened?  I am sure you will not want all such issues to be brought directly to you but to what other support do we turn when the Local Social Services are struggling and unable to communicate with us or support us.  You are aware of our experiences, is it any wonder we cannot trust Local Authorities on the future of WILG recipients to be able to live independently with adequate support? 

With thanks

Sheila Meadows