Independent Living Fund

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…


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

Falling Apart at the Seams

 Loads of things to let you know, but so little time.

First of all a little self promotion, as the following paragraph is from Ian Lucas MP’s monthly CLP report:

I have been working alongside Nathan Davies, a party member here in Wrexham, over the changes the Government has made to the Independent Living Fund. The debate included MPs from Northern Ireland, Scotland, and England as well as Welsh Labour colleagues Susan Elan Jones and Jessica Morden, and it was notable that each part of England criticised the changes the UK Government has made to the administration of the successor to ILF. I was able to pay tribute to the work Nathan has been doing – and to highlight his front page appearance in the Leader that morning. I was not particularly impressed with the Minister’s response, although I will take her up on her offer to meet to discuss my concerns. 

The following video accompanies this text:

Independent Living Debate with Ian Lucas

I think we have established how brilliant I am, but this awesome individual is also struggling at the moment with the effects of Friedrich’s Ataxia. This cruel disease is progressing quickly and really starting to affect my swallowing and speech. I have particular problems before food as I am regularly coughing and choking uncontrollably on my own saliva as I anticipate my food.

Another problem is with my speech. I am afraid that I am beginning to slur more than I use to and I just cant bear listening to myself on TV or radio as the voice that I hear is not the one that I hear in my head when speaking. I really should do something about both problems, but as I am so busy trying to save WILG, I am letting my health slide.

Earlier this week, I received a phone call from the local hospital asking me to come in for a camera down my throat following discussion with my GP about my difficulties choking. I chose to decline there kind offer as I am so busy with other things and cannot afford to lose my voice or become ill at the moment.

I received a newsletter from Ataxia UK today informing me of a speech and language therapy course that they are running in association with the University of Stirling. The second are all taking place through Skype so they are open to everyone. I really should take part and I would like to if only I had the luxury of time to spend looking after myself. The Tories and Wrexham council are ensuring that this is just not possible at the moment.

1Study Advert, Version 4.0, 05 January 2018

Speech Therapy Treatment Study for Friedreich’s Ataxia

Communication problems are a frequent consequence of ataxia. Many people report a decrease in quality of life as they can impact on our social relationships, employment opportunities, etc. Yet there currently is no effective treatment for speech problems that has been properly evaluated, and there is uncertainty amongst clinicians on how best to support people with ataxia with their communication.

We are looking for participants for a study investigating a new treatment approach for speech problems. There is good evidence that this approach is effective for Parkinson’s Disease and we  want to find out whether it can also help those with ataxia. This study is funded by Ataxia UK and aCHaf and carried out by researchers at Strathclyde University in Glasgow.

The treatment will be administered via Skype in your home and there is no need to attend a clinic. It will run for 8 weeks, with two therapy sessions per week and homework practice for the other days. A typical LSVT therapy session will involve practising a good voice production on a series of long ‘ahhhs’ focusing on controlling the loudness of your voice, as well as the pitch. We will then try and transfer these skills to speaking by reading out individual words and functional phrases, working our way up to longer stretches of speech over the course of therapy. As treatment will be carried out in English, it is important that you have Basic English speaking and reading skills. This protocol of activities will be the same for each session, but the materials will increase in complexity. Homework exercises will follow a similar protocol to the therapy sessions and will take about 30 minutes. Ideally, we would like you to practise at least another four times during the week.

We will measure how much your speech has changed after treatment, and also ask you what youthought of the therapy approach. To do this, we will perform two short assessments before and two after treatment, and also do an interview. This will again be done via Skype. Altogether, the study will take about 6 months.

To be able to take part, you need to fulfil the following criteria:
􀁸 Have a confirmed diagnosis of Friedreich’s Ataxia
􀁸 Experience speech or voice problems
􀁸 Not have any other neurological or speech problems
􀁸 Be aged 16 or over
􀁸 Have access to the necessary technology (good internet connection, access to a computer

that allows you to use Skype and has a functional microphone input)
􀁸 Have Basic English speaking and reading skills

If you are interested in participating, please get in touch with us by phone or email and we will give you more detailed information. Please contact:

Aisling Egan
Speech and Language Therapy Unit
School of Psychological Sciences and Health
Strathclyde University
Tel: 0141 548 4393

I should probably email Aisling to find out more information.

I cannot end this blog without mentioning the two events that have on this week.  The first of which is a #SaveWILG Art exhibition at Theatr Clwyd in Mold, north Wales. This event runs from January 24th to February 12th and includes art, poetry and pictures from a wide range of disability activists and artists. The official media day for this is on February 2nd. I am very proud of what we have put together in such a short space of time.

A leaflet for the Theatr Clwyd event has also been produced by Heather Wilson.


SaveWILGSideB2 copy

Our North-East Wales WLG/M comrades are centrally involved in organising this great event. It will be a fantastic occasion, but we need to get as many people there as possible! This is a day of entertainment and information. There is alcohol, soft drinks and food on sale at the venue and there is full Disabled access and a Disabled toilet.  The least we hope anyone can do is promote this event by sharing the flyer and printing it off and putting around your area, disability groups, CLPs etc etc. Raising awareness of the event is crucial to the campaign’s success!The event is FREE to all. Please do help in any way you can.



Letter from Ian Lucas MP

I received this letter from my MP Ian Lucas who has been extremely supportive of my #SaveWILG campaign. He was trying to find out information about how the closure of the Independent Living Fund (ILF) has affected disabled people. He wanted me to see the response he received – printed below – from Sarah Newton MP, Minister for Disabled People, Health and Work as it looks as if the Government is shifting responsibility for ILF  to local authorities who will now carry the can.

Thank you to Ian for his continued support. Together we will fight for justice for all disabled people against an obviously heartless Government…

Dear Ian

Thank you for your email of 2 November to my predecessor concerning the Post Closure Review of the Independent Living Fund (ILF).

As you are aware, the responsibility for the ILF has been devolved to local authorities. Central Government does not monitor individual authorities’ assessment of need. At the point of closure of the ILF, 94 per cent of users were also receiving support from local authorities. This duplication of support indicated that there would be a rationalisation of awards , therefore, it was expected that some awards would be reduced to rectify this.

The aim of the post closure review was to provide a qualitative assessment of the experiences of the closure of the ILF in England, as perceived by its former recipients and local authority staff within adult social services department.

This qualitative research comprised in-depth interviews with 50 former ILF users. The ILF closed in 2015 and the interviews took place between August and September 2016, therefore providing a more accurate idea of the immediate impact of ILF closure on recipients. Conducting research of this type is challenging. Many ILF users have mobility or communication difficulties or are vulnerable, which means that interviews are time consuming and can only be conducted by specially trained interviewers.

The Department fulfilled its obligations by publishing the findings of the interviews, but we would not publish the individual interviews themselves for Data Protection reasons.

We have also published the equality analysis that was conducted prior to the closure of the ILF, which can be accessed using the following link:­ living-fund-equality-analysis

I can assure you that the Department is not seeking to withhold information on present payments to former ILF recipients. As indicated in the answer to your recent Parliamentary Question, the Department does not in fact hold this information. I suggest that you seek the information from individual local authorities.

Sarah Newton MP

Minister for Disabled People, Health and Work

Letter from Huw Irranca-Davies AM

I am sharing this letter from Huw Irranca-Davies  AM to Lesley Griffiths AM concerning my #SaveWILG campaign. There are many, many issues that I would like to pick up from this email, but I am biting my lip until we can arrange a meeting with my MP and Huw Irranca-Davies himself.

I hope this can be in one of the 24 days before Christmas, so that I can discuss my concerns and enjoy the festive break but I am not holding my breath and am preparing for my 8th consecutive Christmas of concern and worry over the future of Independent Living for disabled people in 21st century Britain.

Seasons Greetings…


Lesley Griffiths AM
Assembly Member for Wrexham


14- November 2017

Dear Lesley

Thank you for your letter to Rebecca Evans AM on behalf of your constituent, Mr Nathan Davies, outlining his ongoing concerns regarding the Welsh Independent Living Grant (WILG). I am replying as policy on social care in Wales now forms part of my Ministerial portfolio.

I have agreed to meet Mr Davies and his MP, Ian Lucas, and my Diary Secretary is arranging for this to take place as soon as is possible.

In relation to Mr Davies’ comments about Wrexham County Borough Council, my officials have been in contact with the authority to ascertain the latest position. I am aware that Wrexham initially had social worker vacancies which impacted upon its ability to undertake future support reviews of WILG recipients and reviews of those receiving social care more generally. This seems to have occurred in Mr Davies’ case.

Wrexham County Borough Council now informs us that it has recently recruited additional social workers to undertake reviews of those receiving social care from the authority, thereby releasing more experienced officers to undertake future support reviews of its WILG recipients. Recipients will be contacted individually by the authority to enter into a dialogue as to the wellbeing outcomes they wish to achieve to live independently and to agree the future support they require to achieve these. The authority intends to complete as many of these support reviews as possible within this financial year, with those not able to be completed by then as soon as possible in next financial year. Whenever a WILG recipient’s support review is completed, their payments under the WILG will not cease until a package of care to deliver the future support they require is in place.

One public consultation on the way in which former recipients of the Independent Living Fund should be supported in the future was held. This ran from October to December 2014 and asked for views on the principle of four potential options to provide support. A summary of the responses received and the conclusions reached was published in March 2015. Stakeholders, including recipients, were informed of this at the time and until recently this summary appeared on the Welsh Government’s website (only being removed as part of a wider updating of our website). I attach a copy of the consultation summary published in 2015 together with a copy of the information letter on this which officials sent to local authorities at the time for them to provide to recipients. I would be grateful if you would provide these to Mr Davies as part of your response to him.

As regards Direct Payments, I understand Wrexham County Borough Council currently operates around 200 such payments to adults to enable them to have control over the care and support they obtain to meet their wellbeing outcomes. The authority is not aware of any operational issues affecting the delivery of these, although accepts that some individuals experience difficulties with recruiting appropriate staff or with securing the care they need from support providers. To ensure their practice is current and appropriate, it has held discussions with officers from Flintshire County Council relating to a collaborative approach to delivering Direct Payments in the region.

If Mr Davies has specific concerns regarding his care package or his Direct Payments from the authority, I understand that Sheila Finnigan-Jones, Service Manager for Disability Services, is happy to meet him to discuss these. Her contact details are:

Tel: Wrexham (01978) XXXXXX E-mail:

Huw lrranca-Davies AC/AM

Y Gweinidog Gofal Cymdeithasol a Phlant Minister for Children and Social Care

Former ILF Recipients in Greater Manchester

With thanks to Brian Hilton.

On Manchester Radio recently there was a feature on what has happened to former ILF recipients in Greater Manchester.

BBC Radio Manchester submitted FOI to all 10 Greater Manchester authorities asking what had happened to the care support of former ILF recipients. The results revealed that 42% of former ILF recipients had had their care reduced since the closure of the ILF.

The item was revisited through the show (see iPlayer link below) and featured a former ILF recipient called April from Stockport who had had her 62 hours a week care reduced  by 38 hours a week. She can’t go out, urinates in a bottle and has a lift in her house that she is unable to use.

In one of the segments they interviewed John Roust (Chief Executive – Greater Manchester Health & Social Care Partnership) who said they had set up a “Personalisation Team” to look at how social care recipients can better utilise and have more control over the care they receive. One example he gave was recipients pooling their resources. An interesting aside is that John Roust has a disabled daughter, so said he had a personal and professional interest in this issue.

In another section they interviewed Jackie Driver (Chair – Breakthrough UK) who said that cuts were seriously affecting disabled people’s wellbeing. Also, said that Greater Manchester Devolution presented us with an opportunity to address such issues.

The segments were featured at

24 minutes

1 hour and 11 minutes

2 hours and 10 minutes

2 hours and 42 minutes

Here is the iPlayer link if you want to have a listen:

Letter from Minister for Social Services and Public Health to the Chair of the Petitions Committee

David J Rowlands AM


Petitions Committee National Assembly for Wales

21 August 2017

Dear David,

Thank you for your letter seeking my views on a petition submitted to the Petitions Committee by Nathan Lee Davies in relation to the closure of the Welsh Independent Living Grant.

As Mr Davies outlines in his petition, the Welsh Government put in place in 2015 the Welsh Independent Living Grant (WILG) with local authorities to enable them to maintain payments to recipients in Wales of the Independent Living Fund (ILF). This was following the closure at that time of the ILF by the UK Government. We introduced this grant to ensure continuity of support in the short-term for recipients. This was to help them meet the additional costs of living independently in the community in a similar manner to the financial support they received from the ILF. This arrangement was to provide time for us to consider the most appropriate way to provide support to recipients in the longer-term, so as continue their ability to live independently.

As Mr Davies indicates, to assist with our consideration of what that longer-term support should be a stakeholder advisory group had been established. This had representation from the organisations which represent and act for disabled people in Wales (such as Disability Wales and the Dewis Centre for Independent Living), representation from local authorities and some recipients themselves. The majority of the representatives on the advisory group were, as Mr Davies says, from the third sector or had themselves received payments from the ILF. This was because we wanted advice from those who fully appreciated the outcomes disabled people seek and what they required from the arrangements we were to put in place to support their independent living.

The advisory group considered a number of potential options to provide support in future to those who used to receive payments from the ILF. These ranged from perpetuating the WILG indefinitely, or for a set period of time, to establishing similar arrangements in Wales to that of the ILF outside of local authorities’ provision, to having support provided in future through local authorities’ social care. The advisory group considered the advantages and disadvantages of each option in terms of its effectiveness to support former recipients and its fit with supporting the larger group of disabled people in Wales who had been excluded by the UK Government from receiving support from the ILF (as it had in 2010 closed the ILF to new entrants).

I am not sure why Mr Davies thinks the advisory group wished to keep the WILG. On the contrary, overall it accepted that the arrangements we had put in place through the WILG could only ever be temporary while a longer-term solution was found. After considering the potential options in the light of the issues I set out above, the advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. None of the members of the advisory group opposed this recommendation.

The advisory group favoured this option as it matched the future support former recipients would receive with that being provided generally to disabled and older people in Wales. This is through our new person-centred ethos for social care being delivered through the Social Services and Well-being (Wales) Act 2014. The Act came into effect from April last year and changes the way people’s needs are assessed and the way support is delivered. People now have more of a say in the well-being outcomes they wish to achieve and the care and support they require to deliver those outcomes. This is similar to the ethos behind the original establishment of the ILF. The Act also contains stronger powers to keep people safe from abuse and neglect.

The advisory group also saw this option as the way forward as it removed the inequitable two-tier approach which currently exists to supporting disabled people in Wales, with some receiving only support from their local authority, while others can receive this as well as dedicated payments from the WILG.

It is also important to note that prior to the advisory group’s considerations we undertook a public consultation on a number of possible options to provide support in future. While it is true that the majority of those who responded favoured arrangements in Wales similar to those of the ILF, this was not the option favoured by all recipients who responded. Indeed the vast majority of recipients did not respond to the consultation at all. Nevertheless, my officials did contact those in the Scottish Government to establish the basis of the dedicated support arrangements for former ILF recipients in Scotland and the possibility of those arrangements being extended to Wales.

While ILF Scotland could administer and make payments on behalf of the Welsh Government, it became clear it would not be in a position to do this for a considerable period of time. In addition, it required significant set-up and operating funding to administer our payments, totalling in the first year of operation well over £1 million with annual operating funding in excess of £0.750 million. Such funding would have needed to be top-sliced from the overall funding available to support former recipients in Wales, thereby substantially reducing the funding available for their support itself. On this basis we did not believe that these arrangements would be acceptable given the reduction in support to which it would lead, or that they provided good value for money. Overall the advisory group shared this view and was keen that already limited funds were not used disproportionately on establishing and maintaining separate arrangements to provide support.

Consequently, I accepted the stakeholder advisory group’s advice to have support to former ILF recipients in Wales provided in future by local authorities as part of their social care provision. To put this into place the advisory group also recommended that there should be a two year transitional period, whereby in the first year authorities establish all recipients’ desired well-being outcomes and agree with them the support they require to achieve these. In the second year recipients would transfer over to receiving all of their support from their local authority, with their payments under the WILG ceasing at the point at which this occurred. I also accepted this recommendation in full, with as a result the transitional period commencing from 1 April this year and due to conclude on 31 March 2019.

Clearly those who wished to see a different option chosen will be disappointed with the decision taken. However, that decision did not ignore the advice of the representatives of disabled people in Wales on the stakeholder advisory group but was fully in accordance with it.

Yours sincerely,

Rebecca Evans AC/AM

Gweinidog Iechyd y Cyhoedd a Gwasanaethau Cymdeithasol

Minister for Social Services and Public Health


Disabled activist ‘is fighting for his life’ as he hands petition to Welsh government


A disabled activist has handed in a petition of hundreds of signatures that calls on the Welsh government to reverse its decision to close its version of the Independent Living Fund (ILF).

Nathan Lee Davies (pictured) says he is fighting the decision to scrap the Welsh Independent Living Grant (WILG) because he is terrified of the prospect of his cash-strapped local authority taking over full responsibility for providing his care package.

He has been told that without WILG his own care package would be reduced from 86.5 hours to just 31 hours a week.

He says that such a cut would put an end to all his current community activities, including his involvement with Wrexham Glyndwr University, Wrexham football club, Disabled People Against Cuts, FDF Centre for Independent Living, and the Care and Social Services Inspectorate Wales.

He is also writing two books, and a blog, and is working with Disability Arts Cymru to create a performance and exhibition of his poetry.

He told Disability News Service (DNS): “I cannot cope with such a limited number of hours per week. This is why I am fighting with every fibre of my being.

“It really is a case of life or death. I have no interests in merely existing. I want to live.

“Without help and support I would be unable to do any of this work that involves me in the community.”

The Labour-run Welsh government announced last November that, after a two-year transition period, it would transfer all of the £27 million-a-year provided by the UK government to support former ILF-users in Wales 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 interim WILG scheme the Welsh government has been running as a stopgap to “ensure continuity of payments to recipients” since the Department for Work and Pensions closed ILF in June 2015.

Funding for WILG will now transfer to local authorities during 2018-19, with all former ILF-recipients in Wales having their support needs met solely by their local authority by 31 March 2019.

Since the Welsh government’s announcement, Davies has been campaigning to persuade it to reverse the decision, including setting up the petition – which has now been signed by more than 500 people online and in person – and collecting photographs of supporters holding one of his campaign postcards.

He said: “The current system allows users the security of depending on receiving their funding from three different ‘pots’ – WILG, local authorities and our own personal contribution.

“This gives us a sense of security and ensures that we cannot be dictated to as mere passive recipients.

“Instead, all parties have to be in agreement about what will benefit the individual the most.

“This is something worth fighting for.”

But instead of this three-tier system, he said, the Welsh government had now “sold disabled people down the river.

“They are washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto local authorities.”

A Welsh government spokeswoman told DNS in a statement: “Organisations that represent disabled people who have been recipients of the Independent Living Fund, recommended that their future support would be best provided through local authority social care provision, with consistent arrangements in place to support disabled people in Wales.”

But Disability Wales, which was part of the stakeholder advisory group the Welsh government consulted, has made it clear to DNS that it did not support passing funding to local authorities.

The Welsh government added: “We would be surprised if Disability Wales were suggesting that certain disabled people in Wales should have their support needs met in a different way to other disabled people.”

Davies said he believed the Welsh government had listened only to the local authorities on the advisory group.

He has been supported by the north-east branch of the Labour left-wing grassroots campaign Momentum and the Unite union in Wales.

But he said he was disappointed that Disability Wales – the national association of disabled people’s organisations in Wales – had not supported his campaign.

Miranda Evans, policy and programmes manager for Disability Wales (DW), said they were not able to support the petition – which is critical of the Labour party in Wales – because it was too party political.

But she stressed that DW’s preferred option was for a new Welsh independent living scheme – a Welsh version of ILF – that would protect those currently receiving WILG funding and would also be open to new members.

DNS has seen DW’s response to an early consultation on the Welsh government’s plans, and it makes it clear that none of DW’s members or the other disabled people it had consulted about the future of WILG were in favour of handing the funding directly to local authorities, and had instead “expressed strong opposition” to this.

It also stressed that such an option was “totally unacceptable to existing ILF recipients, their carers and other disabled people”.