WILG

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.

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 1,500 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. This is hardly surprising when we consider that the stakeholder group is largely comprised of representatives from local authorities…

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, Teresa May has ended austerity and Welsh Labour have made a significant shift to the left. Surely, Welsh Labour will want to distance themselves from a decision that mirrors that made by the Tory Government?

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 is not the time for a revolutionary change in the way social care is delivered. Disabled people merely crave continuity and reliability that the ILF provided.

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:

http://www.bbc.co.uk/news/uk-wales-politics-38385381?SThisFB

http://www.disabilitynewsservice.com/welsh-government-has-sold-disabled-people-down-the-river-on-post-ilf-plans/

What Do I Do Now?

These are very frustrating times for me as I struggle to come to terms with the fact that I have become a writer who can no longer write.

Friedreich’s Ataxia has robbed me of many functions that most of us take for granted, but the deterioration of my dexterity and inability to type freely is the most heart breaking aspect of my progressive condition. I have tried voice recognition technology and Eyegaze systems, but found annoying time consuming glitches with both of these potential solutions that deem them unworkable.

My Occupational Therapist is trying hard to find a solution to this problem, but she can’t perform miracles and keeps hitting the same brick wall that has been impossible for me to hurdle since publishing Every Silver Lining has a Cloud in 2013.

A few weeks ago she came up with a great idea when in discussion with the company Remap – who are specialists in coming up with new technologies to help disabled people live independent lives – she was advised to encourage me to be featured in the next series of The Big Life Fix with Simon Reeve. This programme brings together some of the brightest brains in Britain to try and solve problems that are affecting the lives of individuals and communities across the country.

This just shows the scale of the problem that I face – it needs a specialist team of inventors to conjure up a bespoke design to suit my individual needs. Nevertheless, I decided this was to good an opportunity to miss and with the help of my PA’s I wrote the following application:

 
I would like to register my interest in being featured in the next series of the Big Life Fix with Simon Reeve. 

I am a 40 year-old male who lives in Wrexham, north Wales with a progressive genetic disease known as Friedreich’s Ataxia.  I use a wheelchair for mobility purposes and I am an author and disability activist. 

My condition has deteriorated quickly since I published my first book in 2013.  I would like to write another book but I am having trouble with my dexterity and find it difficult to write.  it can take me up to 15 minutes to write a simple Tweet.  It is very frustrating to feel trapped in your own body. 

I have to rely on my PA support to help me type lengthy emails such as this by dictating my thoughts.  This is the best solution I can find at the moment as I have tried Voice Recognition Technology, but as my voice changes throughout the day – becoming increasingly slurred as I get tired – the programme does not recognise my voice.  I have also tried Eyegaze Technology but found problems when trying to use this software.  I found that I would be quicker trying to write by myself and also had problems with the light reflecting off my glasses. 

This is a scary time for me as I currently receive 86.5 hours of care and support per week but in these times of austerity this is likely to come under pressure following the recent announcement that the Welsh Independent Living Grant (WILG) is due to close in April 2019.  For further details about this please see the link below:

http://www.bbc.co.uk/news/uk-wales-politics-38385381?SThisFB

Subsequently, my support is under threat at the time when my progressive condition means that I need more assistance.  At the moment I am left alone between 14:00 and 19:00 which is  extremely frustrating.  Not only am I unable to type but I am also unable to communicate on the telephone due to my poor hearing and slurred speech.  I am also unable to go out of the house during these periods as I find it impossible to use the toilet on my own or access my wallet. 

I could dictate much more, but I feel you now have a basic understanding of the problems that I face every single day as I struggle to fulfil my potential and live life as I choose.

I watched the first series of the Big Life Fix and was very impressed.  It would be a dream come true to appear on the programme and for the team of inventors to help find a life changing solution to my specific needs by tailoring technology to suit me in a world where technology seems to be hindering and not helping me – for example I can not use touch screen technology due to my dexterity. 

I look forward to hearing from you soon. 

Many thanks

Nathan Lee Davies

After composing this email I was fairly confident that I would receive a positive response and daydreamed about appearing on national TV, forgetting that I am a left wing activist with a vocal dislike of the BBC and status quo in general. Subsequently, it can be no real surprise that I received the following email yesterday afternoon:

Hi there,

Thank you so much for applying for this series of BBC Two’s Big Life Fix.

Unfortunately, we will not be progressing further with your application at this stage, but if anything changes then we will of course get back in contact with you.

We would love to keep your details on file here at Studio Lambert so we can get back in contact with you should we come back for another series, or if there are any other shows we make that we think you might be interested in.

If you would like for us to remove your details, please let us know by replying to this email.

Very best wishes,

The Big Life Fix Casting Team.

I am now disappointed and without hope for the future. I will keep plodding on and dictating my words of frustration to my support staff while remembering that there is always someone worse off than me. I will keep fighting and do what I can to rid this land of the Tories and give disadvantaged people such as myself the opportunity to progress and thrive in a more balanced and progressive society.

 

Welsh government has ‘sold disabled people down the river’ on post-ILF plans

BY JOHN PRING – DISABILITY NEWS SERVICE

The ruling Labour government in Wales has been accused of “selling disabled people down the river”, after deciding that local authorities will be handed all financial responsibility for supporting former recipients of the Independent Living Fund (ILF).

The Welsh government has decided that, after a short transition period, 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, Rebecca Evans, the social services minister, said in a statement – following a public consultation and advice from a stakeholders group – 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.

The Welsh government has not yet decided 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.

Evans appeared to mirror the arguments of the UK government when it closed ILF last year, claiming that continuing under the present system would “provide support to former ILF recipients in a different way to which care and support would be provided to other disabled people in Wales”.

She added: “As a result I have concluded future support to former ILF recipients through normal social care provision from local authorities would be the most effective approach.”

But David*, a former ILF-user from Wales, said he felt “let down” by Evans’ decision.

He said it appeared that the Welsh government had “simply sold disabled people down the river by washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto irresponsible local authorities”.

He said he would now be at the mercy of his “heartless” local authority for provision of the care and support he needs.

He said: “This is not something I am confident about due to the fact that my social worker has already stated that without WILG I would face a reduction in my hours of care from more than 80 hours a week to a ridiculous 30 hours per week.

“I cannot cope with such a reduction as I am an active member of my community and like to think that I contribute positively to society.”

He said he was struggling to live independently because he had a progressive condition and already needed more support than he received.

He added: “I have been using all my time and energy to try to retain the hours I currently have and obtaining more seems like an impossible task.”

Disability Wales, the national, user-led organisation representing disabled people in Wales, had been pushing the Welsh government to create a Welsh ILF.

Rhian Davies (pictured), chief executive of Disability Wales, said Evans’ decision was a setback for the independent living movement in Wales.

She said ILF had been a “valuable resource” for many years for former recipients and had “supported their ability to live independently”.

She added: “The concern is whether that will be able to continue.”

She and David both said they were concerned that former ILF-users in Wales would now experience similar cuts to their support packages to those that have been seen in England.

Only last month, Channel 4 News reported that 80 per cent of councils in England had cut the care packages of some former ILF-users in the wake of its closure, while two-thirds had not ring-fenced the money given to them by central government.

Davies said: “Everything is pinned on the hopes that the new Social Services and Well-being (Wales) Act will lead to people being able to access a range of support in the community, but obviously that is a big ask in a climate of cuts in local authority services.

“Given the act only came in in April, it is not a lot of time to transform the way social services are delivered.”

David said he believed the Welsh government would “hide behind” the new act.

He said: “This is a highly-regarded piece of legislation that promises much if it is rolled out correctly.

“It would be great to live in a society which was co-productive and full of accessible, well-funded social enterprises to help me live independently.

“I won’t hold my breath, though, as for such an inclusive society to exist we need major investment into infrastructure and cultural changes to our disabled-unfriendly society.”

Asked whether the funding that will be passed to councils from 2018-19 would be ring-fenced for former ILF-recipients, or even for socal care, a Welsh government spokesman said: “As funding is not due to be transferred to local authorities until 2018-19, the exact basis of this will be subject to future discussion between the Welsh government and local authorities.

“Whatever the outcome at the point of transfer, local authorities will become responsible for providing the support that former ILF recipients in Wales require, and for meeting the cost of this.”

*Not his real name

Hustings arranged for the benefit of the disabled community in Wrexham

After a lot of communication via Facebook and Twitter with local candidates for the forthcoming Welsh Assembly elections, Sheila Meadows OBE and I have organised a hustings for recipients of the Welsh Independent Living Grant to listen to the prospective party plans for independent living and help them decide who to vote for on May the 5th.

Below I have copied the flyer that Sheila and I wrote that is to be emailed to those affected in Wrexham and Clwyd South. We are hoping that the meeting will be well attended as we have had confirmation that a number of prominent local politicians will be attending. Those that have been invited include Carrie Harper and Mabon Ap Gwynfor of Plaid Cymru, Alan Butterworth and Duncan Rees of the Green Party, Lesley Griffiths and Ken Skates of the Labour Party and Andrew Atkinson of the Welsh Conservatives.

The flyer reads as follows:

Future of WILG (Previously ILF)

 

Independent living is at risk for disabled people across Wales. In the run up to the May 2016 Assembly elections we have managed to arrange a meeting with local candidates about how they, and their party, plan to support disabled people if elected. 

Meeting to be held at:

Maesgwyn Community Centre

Lilac Way, Wrexham,

LL11 2BB 

Monday 25 April – 1:30-3:00pm

 

The Welsh Independent Living Grant (WILG) will remain in place until March 2017. A total of £27 million will continue to be transferred from the Westminster Government to Wales until 2020. How this sum of money will be administered is anyone’s guess. Should Wales establish their own Welsh Independent Living Fund to provide long-term security? Perhaps you accept the funding should come via the Local Authority but require assurances over ring-fencing? Whatever your standpoint, this is our chance to meet, discuss the issues and question the politicians that will influence our lives over the next political term. Don’t miss your opportunity to be heard…

If you have a question that you want to put to the candidates, or for us to feed back to the Welsh government, email your questions to either Sheila Meadows (sheilamdow@aol.com) or Nathan Lee Davies (nathandavies01@hotmail.com).

We look forward to seeing you all on 25 April at Maesgwyn Community Centre.

Open Letter to Welsh Assembly Candidates for Wrexham

I have spent the morning writing to all the candidates in the Wrexham area for the forthcoming Welsh Assembly elections in order to invite them to take part in a hustings that I am hoping to organise for recipients of WILG.

I will publish any replies I receive and keep you up to date with my progress.

***

Dear Candidate

I am writing to give you the opportunity to be involved in a hustings that I am organising – along with Sheila Meadows OBE – to clarify your position on the future of independent living for disabled people in Wales. Alternatively, I wonder if you are holding any cross party meetings or hustings that WILG recipients could attend to ask questions and gain information.

As a former recipient of ILF, I now rely on the Welsh Independent Living Grant (WILG) to pay for my care team. Future arrangements past March 2017 are clouded in doubt and uncertainty with disabled people facing a bleak future. It is laughable to think that I am one of the lucky ones as in 2010 the ILF was closed to new recipients. Will you, and your party, be prepared to fight for independent living for all?

We are hoping to hire Maesgwyn Community Centre as a venue for this proposed hustings and I believe this will present you with an excellent opportunity to address concerned members of the electorate and reassure them about what you would do to protect and enhance their rights.

In 2013 there were 111 claimants of ILF in Wrexham. We can assume that the numbers receiving WILG are similar and if we include family members and those employed and reliant on such funds then this translates to a large proportion of the eligible voting community. I would argue that this therefore gives you a valuable chance to prove your worth to the local community.

Many thanks for your time and I look forward to hearing from you soon.

Yours sincerely

Nathan Lee Davies

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.

Keep on keeping on

So, the Welsh Independent Living Grant (WILG) has been extended to March 2017. This is a reason for celebration and is the culmination of a lot of hard work by many people over the last 12 months to protect independent living for disabled people across Wales.

However, we cannot rest on our laurels and must start thinking about what we are going to do this time next year. We are still looking for a long-term solution to the problems that the Tories caused when they closed the Independent Living Fund (ILF) .

We also need to analyse the letter which was sent to Paul Swann at Disability Wales who acts as Secretary of the Cross Party Group on Disability. The full letter can be downloaded here:  Minister’s response to CPGD re ILFWILG.

As stated above, Mark Drakeford AM (Minister for Health and Social Services) has confirmed that the draft Welsh Government budget contains £27 million to enable WILG to continue until March 2017. However, it is clear from the letter that the current level of funding form the UK Government is only sufficient to maintain recipients’ payments at the same level as they previously received form the ILF. It does not cater for any changes in a person’s circumstances or any changes in the level of support they require. The Minister confirms that the funding provided by the UK Government does not include any funding in respect of administration costs.

The Minister does recognise that a long-term solution is required and he has confirmed that he hopes to be in a position to respond more fully with regard to the scheme within a month.

With an election on the horizon in Wales the Assembly Members will be preoccupied until May but this does not mean we can’t do our homework in building a strong case as to why we need a more lasting Welsh ILF system – similar to the ones that have been established in Scotland and Northern Ireland.

I intend on meeting my prospective AM and getting their commitment to safeguard independent living in writing, I’ll write to the Welsh national press to make this issue a political hot potato and in a change of tact I also hope to get back in touch with Ian Lucas, my local Labour MP, who has always represented me well in Westminster. I would like to ask him to press the Tories hard about the amount of money they give to the devolved governments to cover independent living. It is not good enough to simply pass on the same amount of money distributed in 2015 as this does not account for new claimants or changes in circumstances. As someone with a progressive disability, I fear that the time will come – sooner rather than later – when I won’t be able to pay for the hours of care needed for me to remain living independently in the community; The Tories must be challenged and stopped from pushing ahead with fascist plans that boil down to nothing less than systematic social cleansing.

Writing and campaigning is what I am good at. Back in December, I wrote a blog entry entitled Fighting for independent living in Wales in which I appealed for assistance from recipients of ILF in Scotland and Northern Ireland. I wanted their opinions and experiences on how their national ILF schemes functioned since the closure of the UK-wide ILF in the hope that it may prove an inspirational model for us to follow in Wales.

I received the following comment in response to my blog: 

Hi Nathan – My name is Charles Rainey and, in 2012, with my wife set up the ILF User Group NI, dedicated retaining the ILF in NI should Westminster decide to replace it. With the support of relevant charities and individual politicians we drove the decision to set up the current situation where users have basically noticed no difference going from one to the other. Send me an email and I can send you more details on our approach.

I sent an email to Mr Rainey and set up a telephone call in which I’d discovered that my new found friend from Northern Ireland had done wonders in setting up a User Group that actively lobbied for the retention of an ILF for Northern Ireland. Mr Rainey is an accountant by trade and deserves enormous credit for all his hard work in helping to create a stable future for disabled people in Northern Ireland. I wish that I could follow his inspirational lead, but I am just not cut out for all the paperwork and bureaucracy that is involved in establishing such a protest group. Therefore all I can do is appeal to any professionals with a conscience based in Wales to take up a similar challenge to Mr Rainey and help provide hope for disabled people nationwide.

On top of this I am also concerned about my own staffing situation. I currently have a vacancy for a personal assistant for 16 hours per week with every chance that this will lead to more hours. This is a great opportunity to work with a small team in a rewarding environment. Rates of pay are £7.26 (between 7am and 8pm) and £9.64 (between 8pm and 7am) and training opportunities are available. However, this position has been advertised for over 12 months with little response and even when I do receive applications from candidates and invite them for interview then I find they are far from suitable.

I believe this is a sign that we live in an increasingly uncaring society.

I guess this is a call for anyone in the Wrexham area, preferably female, with a caring attitude to read the following job advertisement and consider applying to become a member of my staff.

http://www.penderelstrust.org.uk/recruitmentDetailsPA.php?recruitment_id=5211

I don’t bite, honest.