Northern Ireland ILF

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 …

Writing to local newspapers…

I have written the following letter to a number of local newspapers across Wales, urging the Welsh Government to reconsider their decision to close the Welsh Independent Living Grant (WILG).The campaign for justice continues…

If you wish to write a letter in support of this campaign, use the following emails:

This is the email that I fired off in the hope that people will read it and take notice of what is going on. It is worth a go.

 

I am writing as a recipient of the Welsh Independent Living Grant (WILG) and a disability activist who intends on asking Welsh Labour to reconsider their decision to close WILG as of April 2019. This payment was introduced to help people who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015.

WILG was due to run until the end of March 2017, but Social Services Minister Rebecca Evans said in November that funding would continue for another year.

The annual £27m 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.

Something needs to be done as our disabled friends in England have suffered under a similar system that has seen local authorities being solely responsible for their care and support since 2015. This cannot be allowed to happen in Wales as well. Disabled people must organise themselves and demand to be listened to.

The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens who didn’t want WILG scrapped. The key point is that the advice of disabled people was ignored.

This is the time to fight back as Welsh Labour are basking in the glory of Jeremy Corbyn’s success in the recent General Election. The prevailing mood has changed and Welsh Labour have apparently made a significant shift to the left. Surely, Welsh Labour will want to distance themselves from a decision that mirrors the one made by the Tory Government in 2010?

It should also be remembered that closure of WILG is not inevitable as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF.

Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities. This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape?

They will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success – with no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure. 

Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision…

There are a number of ways that WILG recipients, family members and personal assistants can help to make a difference. Those concerned can sign the petition that has currently received almost 250 signatures, take part in the postcard campaign that is being orchestrated across social media and put pen to paper to their local AM. To find out more about these projects, please contact Nathan Lee Davies at nathandavies01@hotmail.com or search Facebook for the Save the Welsh Independent Living Grant (WILG) page. Twitter users can find me on @nathanleedavies or you can find all the information about this campaign on my blog at https://nathanleedavies.wordpress.com/

Thank you for your time.

Nathan Lee Davies, Wrexham

Briefing on the Welsh Independent Living Grant (WILG)

Briefing on the Welsh Independent Living Grant (WILG)

Background:

The Welsh Independent Living Grant (WILG) was introduced by Minister for Health and Social Services, Mark Drakeford AM to help people with high care and support needs who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in June 2015. More than 1,500 people are helped by the scheme across Wales.

The grant was only ever meant to be a short-term measure as Mark Drakeford wanted to give further thought to three longer-term options to identify which one might best deliver effective support, despite the difficult financial position.”

These options included the possible extension of current arrangements, a potential arrangement with the body set up in Scotland to provide payments to former ILF recipients there to do the same for Welsh recipients and, as in England, to transfer the funding to local authorities in Wales to bring ILF recipients within the arrangements for providing care and support set out under the Social Services and Well-being (Wales) Act 2014 for disabled people more generally.

Substantial time and money was spent on a consultation that overwhelmingly showed support for either a partnership with the Scottish ILF or a continuation of WILG – anything rather than distribute the funds solely to local authorities and end the reliability of three-way funding between government, local authority and personal contribution…

 

November 2016:

The new Minister for Health and Social Services, Rebecca Evans AM, decided that the £27 million-a-year provided by the UK government to support former ILF-users in Wales will be passed directly to councils.

There will be no new Welsh ILF – even though such a scheme has been set up in Scotland – and no continuation of the Welsh Independent Living Grant (WILG) scheme the Welsh government has been running as a stopgap since the fund closed in June 2015.

Instead, Evans said that funding for WILG would continue in its current form through 2017-18, but would transfer to local authorities during 2018-19. All former ILF-recipients will have their support needs met solely by their local authority by 31 March 2019.

In addition, the Welsh government has not yet made it clear whether the funding it will transfer to local authorities during 2018-19 will be ring-fenced for former ILF-recipients, or even for social care spending.

 

Why we oppose this decision: 

The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens. Disabled people, their families and support workers didn’t want WILG scrapped and the key point is that our advice was not accepted.​

It should also be remembered that closure of WILG is not inevitable, as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF.

Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities.

This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape?

Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision.

In a written statement in February 2016, Mark Drakeford AM said: “The level of recurrent funding being transferred to the Welsh Government from the UK Government to meet this responsibility is flat-lined at £27 million per year. This is sufficient to be able to maintain recipients’ payments at the same level as when the ILF was closed. There is, however, no scope to fund a change in a person’s needs or for any changes in the cost of the support they require. Neither does this transfer include any element for the administration or set-up costs associated with the arrangements to provide support we operate in Wales. Such costs would have to be top-sliced from the £27 million per year thereby reducing the level of the payments we were able to afford. As a result, this level of transfer greatly restricts the options we are able to consider for providing support to recipients in the longer term.”

To an extent, we sympathise with this situation and recognise that funding difficulties have their roots in Westminster. However, a strong government should provide for and protect those they represent, instead of washing their hands of responsibility of those in need while passing the buck to over-stretched local authorities and frittering millions on harebrained schemes such as north Wales metro. People should be prioritised over profit.

Welsh Labour will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success. At the moment, there is no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure.​