Minister for Health and Social Services

Open Letter from Daughter of WILG Recipient #SaveWILG

I received the following email from Carmarthenshire-based Tracey Howells, the daughter of a WILG recipient. The following should provide hope and support for anyone wanting to oppose decisions made by local authorities. 

Those of you who have been following this blog closely, will not be surprised to read about yet more incompetence from local authorities. The good news for Tracey is that the Welsh Government have listened and responded to the #SaveWILG campaign by pausing the transition and introducing a new policy to protect WILG recipients. Full details can be read here.

This blog will be added to the WILG Voices page to demonstrate the dangers of relying on local authorities for responsible social care provision while underlining the dangers of neo-Liberalism.

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RE: ILF /WILG Myra Howells Social Services assessment with a reduction of 65% to her support package.

I feel that I must share the complications and distress my mother is experiencing with Carmarthenshire Council Social Services’ initiative to move her away from the Welsh Independent Living Grant (WILG). This transition remains unsuccessful and particularly unsettling to date, and I hope that by raising your awareness, it can help change the way this is being rolled out to alleviate the inevitable stress and anxiety it’s causing to all undergoing such assessments.

My mother is registered partially sighted and has been diagnosed with MS for almost 40 years. She has received ILF /WILG for many years and this has proved a major lifeline for her over this time. Indeed, she has taken great comfort from a protected ILF status, being one of a small number of recipients protected from losing the ILF until it finally closed.

The assessment with Carmarthenshire Council Social Services has now been completed, resulting in the proposal to drastically reduce my mother’s hours down from 34 hrs to 12 hrs a week. As such, this represents is a 65% reduction which we cannot accept. This reduction does not reflect the care and support she needs to enjoy her basic quality of life. We really feel that this is a disgraceful proposal, representing an arbitrary cut to meet budget targets, and relying on the assumption that any shortfall will be made up by goodwill and support from family and friends. As such, this approach goes against the fundamental principles of supporting and enabling our most vulnerable in society.

Background
My mother is severely disabled, retaining only the use of her left hand, head and neck. Nonetheless, she still has a very strong personality and knows what she wants. She is fiercely independent, managing to remain living at home and supported with her care partly from Social Services, and partly from employing personal assistants (PA).

During November 2011, my mother’s physical health deteriorated rapidly and she was in and out of Hospital for long periods of time. She was experiencing a lot of falls and incidents and to support her, I gave up a job I loved in S4C based in Cardiff to work closer to home. Unfortunately however, her condition continued to deteriorate and in July 2016, I moved to part-time hours, working 3 days a week and becoming one of my mother’s PA for a remaining 2 1/2 days. To date, this has worked very well and my mother has retained her spirit and independence, and has not been admitted to hospital since.

In November 2018,  a social worker for Carmarthenshire Council contacted me to request a review with my mother. At first, this wasn’t out of the ordinary because my mother did have occasional reviews with social services. The social worker called to see my mother in early December and quite early on in the meeting it became clear that the review was financial, clearly focusing on the ILF payments. This was extremely frustrating because a financial review was never mentioned at any time prior to the meeting, and as a consequence we were inadequately prepared for the detail of the questions. Further, the fundamental objective of the review became very clear during the discussion. When I confirmed to the social worker how much money my mother was getting from the ILF and how it was being spent, her immediate response was to tell me that my mother’s money would be cut and she wouldn’t get anywhere near what she was having now. This was even before she asked my mother any questions about her needs! Subsequent detailed questions focused on what I did for my mother, where again my answers were hampered by a lack of time to adequately prepare. At the end of the review, both my mother and I were left feeling deflated, anxious and annoyed at being unable to provide complete answers to the many questions. We really felt that social services had acted very unfairly by not disclosing the nature of the review to ensure we could not adequately prepare.

Within two weeks, we were contacted again by the social worker for a second review because she needed further information to complete the review. I explained that if she had been open and honest with me on the first phone call regarding the nature of the review, I could have prepared the care plan and we wouldn’t now have to put my mother through a second assessment. The second review was arranged and I prepared a full care plan of the weekly duties my mother’s PAs (including myself) performed. During the review, I kept being told by the social worker that the majority of the things I did for my mother was expected of me as a family member! Also, my mother has a cleaner once a week for 4 hrs who cleans the house and we were told that they wouldn’t support this, but rather they would get a firm in to clean the bathroom for hygiene purposes if needed. My further explanation that the cleaner’s been with my mother for 20 years, becoming close friends from the same village and providing a direct link to her community also failed to gather any consideration.

I have asked twice for a breakdown of how they’ve worked out the new hours, but simply been told that the assessment has determined that 1 PA for 12hrs a week is all that is required. When I asked about the appeals process, I was told there isn’t one and only a complaints procedure. I therefore asked for my mother to be reassessed by a different social worker and another visited on the 8th March. The recommendation from that meeting was that we have an independent assessment, and we are still awaiting this.

Currently, we are therefore in limbo awaiting the next WILG payment due on 19.04.2019, which of course at this stage, we are not even sure will proceed. This is naturally causing a lot of stress and anxiety for my mother and the family, and I’m sure we are not alone in going through such issues. Such practices impact the most vulnerable in our communities and need escalation to ensure we do not lose sight of the fundamental principles behind our social services. In this case, my mother is one of the luckier ones to rely on me to fight on her behalf, and I feel particularly sorry for any elderly and disabled who must be facing such arbitrary cuts all alone.
If you would like any other information please don’t hesitate to contact me.

Kind regards
Tracey Howells

Email: traceylh123@hotmail.com

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Call Out To Welsh Independent Living Grant (WILG) Recipients

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. I would like to hear from other WILG recipients in the hope of holding a series of public/virtual meetings to discuss how we can best oppose this closure and create a pressure group to support each other through this worrying time.

We are particularly interested in those living outside of Wrexham County Borough Council as we attempt to show that this problem of reducing hours of care and support is not just confined to residents of Wrexham. Having said that, please don’t hesitate to get in touch even if you live in Wrexham. The more evidence we can gather, the better. 

The WILG was introduced to help people who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015.

More than 1,200 people are helped by the scheme.

It 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. We must organise ourselves 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. But they 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.

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…

WILG recipients who wish to help make a difference should contact nathandavies01@hotmail.com

Further reading is available below:

‘I will spend what remains of my life fighting this if I have to’ – Disabled man’s battle for grant to live independently

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

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

Cabinet Reshuffle #SaveWILG

Interesting news from Cardiff today as there has been a cabinet reshuffle at the Senedd. This means Rebecca Evans is no longer the Minister for Social Services and Public Health. The person we now need to lobby with regard to the #SaveWILG campaign is Huw Irranca-Davies who has been made Minister for Children and Social Care. I congratulate him on his appointment and look forward to working with him to help support and salvage Independent Living for disabled people across Wales.

The BBC published a full account of the cabinet reshuffle, which can be read below:

Independent AM and former Plaid Cymru leader Dafydd Elis-Thomas is to join the Welsh Government as a minister.

Labour First Minister Carwyn Jones has announced a wide-ranging cabinet reshuffle – promoting five AMs.

Lord Elis-Thomas will be minister for culture, tourism and sport – a deputy to economy secretary Ken Skates.

He left the party in October last year following a series of disputes with Leanne Wood, and has been voting with the Welsh Government.

The reshuffle came as Alyn and Deeside AM Carl Sargeant was removed from the cabinet amid allegations about his behaviour.

Other promotions include Neath AM Jeremy Miles becoming Counsel General, replacing Pontypridd AM Mick Antoniw, and Alun Davies, the AM for Blaenau Gwent, joining as cabinet secretary for local government and public services.

The latter appointment marks the return of Mr Davies to the cabinet since he was sacked from it in 2014.

Swansea West AM Julie James replaces Vale of Glamorgan AM Jane Hutt – a minister since 1999 and the longest-serving Labour minister of all time in the UK – as leader of the house and chief whip.

Below cabinet level, Delyn AM Hannah Blythyn, Eluned Morgan, the AM for mid and west Wales, and Huw Irranca-Davies, Ogmore AM, join the government in junior jobs.

Ms Blythyn will be minister for the environment, Ms Morgan is minister for Welsh language and life-long learning, and Mr Davies becomes minister for children and social care.

All three – and Mr Miles – were newly elected to the Senedd in 2016.

Mark Drakeford remains cabinet secretary for finance, but his responsibility for local government has been given to Alun Davies.

Meanwhile social services minister Rebecca Evans moves to become minister for housing and regeneration.

‘Experience and stability’

First Minister Carwyn Jones said: “I am proud to announce my new ministerial team, which provides a balance of experience and stability, with new drive and energy.

“This strong team will drive forward our ambitious plans for Wales – focusing on growing the Welsh economy, creating jobs, supporting our public services and improving the day-to-day lives of the people of Wales.”

But Plaid Cymru Group Chair Dai Lloyd AM said his party was “unimpressed”.

“Wales as a nation is crying out for new ideas and a change of direction. Wales still does not have a government that will lift the country up the league tables and inspires people with its agenda,” he said.

Andrew RT Davies, leader of the Welsh Conservatives, praised Ms Hutt’s contribution but added: “New names and new faces count for very little – positive outcomes are all that matter to the people of Wales. We need a change in ideology”.

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.​

 

Written statement by the Welsh Government

Future Arrangements in Wales to Support Former Independent Living Fund Recipients

By Mark Drakeford AM, Minister for Health and Social Services

Members will know from my Written Statement of 13 March last year that following the outcome of the UK Government’s spending review, I was to reconsider the options for providing long term support to those in Wales who used to receive payments from the Independent Living Fund (ILF). These payments were to help disabled people meet the additional costs of living independently in the community. This is to update Members on the arrangements to provide this support in 2016-17 and on the potential options for support in the longer term that are being developed further.

 
The UK Government closed the ILF on 30 June last year and transferred responsibility for providing support to ILF recipients in Wales to the Welsh Government. To provide continuity of support, I put in place for the short-term a grant scheme with local authorities – the Welsh Independent Living Grant (WILG) – to run until at least 31 March 2017. Under this, £20.4 million was provided to authorities in 2015-16 to enable them to maintain payments to former ILF recipients at the level they used to receive from the ILF. The WILG has worked well with disabled people who used to receive payments from the ILF receiving these from their local authority instead, with the minimum of issues raised. I must record my thanks to local authorities for achieving this.

 

Following the UK Government’s spending review, I can now confirm that the Welsh Government’s draft budget for 2016-17 contains £27 million to enable the WILG to continue until 31 March 2017 as planned. This is welcome news for recipients as local authorities will be able to continue to provide their payments next financial year at the level they used to receive from the ILF at the time it closed. This will continue to assist in their ability to live independently in the community. As soon as the Welsh Government’s final budget for 2016-17 is agreed, officials will issue grant allocations to authorities to enable payments to be made during 2016-17 on time.

 

Looking ahead 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.

 

In light of this, I have asked my officials to work with stakeholder representatives to develop detailed options for long term arrangements, beyond 31 March 2017. These will include 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. Further options can be considered as they arise in stakeholder discussions, but all would have to operate within the £27 million per year provided for this purpose by the Westminster Government. All would also have to pass the test of maximising the proportion of that £27 million which would go to support recipients, rather than the cost of administration. The work set out above will be carried out as quickly as is possible so that the incoming Welsh Government can make a decision early in its term as to which of these options to implement. This is to ensure that sufficient time is available later this year and next to consider and put in place future arrangements so that these are in place in good time for when the current WILG is due to end on 31 March 2017.

 

I will, of course, ensure Members are kept informed of progress.

Minister provides an update on the Welsh Independent Living Grant

TAKEN FROM DISABILITY WALES WEBSITE

The Minister for Health & Social Services, Mark Drakeford AM, has responded to a letter from the Co-Chairs of the Cross Party Group on Disability, Mark Isherwood AM and Aled Roberts AM.

The Minister confirms that  “the Welsh Government’s draft budget for 2016-17 contains £27m to enable the WILG to continue to March 2017 as planned.”

He adds that “I am currently re-appraising the options for long term support …and plan to confirm later this month my present thinking in this area.

“My officials have met representatives of stakeholders to identify the key information needed, including experience of providing support in Scotland and Northern Ireland. Options for a way forward will be identified by the middle of this year and will be available for the new incoming government to put into place in good time before March 2017.”

Minister’s response to CPGD re ILFWILG.