WILG

Committee Discuss #SaveWILG

The #SaveWILG campaign seems to be back in full swing, although I can’t make much public comment at this precise moment.

I can let you know that the Petitions Committee at the Assembly will be discussing my petition at their next meeting on Tuesday 10th of March at 09:15.

I will be sure to keep you up to date with all the latest #SaveWILG news.

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Dear Petitioner

Your petition will be considered at our next meeting on Tuesday 10 March at 9.15.

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

http://senedd.assembly.wales/ieListDocuments.aspx?CId=430&MId=5911&Ver=4

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

http://www.senedd.tv/

Kind regards,

Petitions Committee. 

Direct Payments and NHS Continuing Health Care #SaveWILG

The following article was taken from the Luke Clements site and was written by Ann James. 

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The Deputy Minister’s update statement on the Welsh Independent Living Grant[1] (WILG) is particularly welcome because it acknowledges the risk to the independence,choice and control of disabled people in Wales unless the Welsh Government enables people in receipt of either a Joint Package of care funded by the Local Authority and Local Health Board or NHS Continuing Health Care to receive a Direct Payment.

This risk to independence has been known to Welsh Government for some considerable time,[2] has been identified in a ‘direct payment note’ on Rhydian Social Welfare Law in Wales and highlighted as a risk in a paper on the Closure of the Welsh Living Grant that was offered as evidence to the Petitions Committee dealing with the Save WILG.

While it is heartening that the Deputy Minister ‘has instructed her officials to undertake a review of the Direct Payments and CHC interface’ one could argue that this is very late in the day. It would be hard to convince disabled people and their carers that setting up a system that enables them to have meaningful and personal control over key elements of their care package will compromise the principles of a public service NHS. The time is ripe to redress this lacuna which has this potential to derail Welsh Government commitments and aspirations for disabled people in Wales.

Recipients of the WILG require immediately the confidence that they can continue to retain the right to have personal assistants of their choosing irrespective of whether the funding from the LHB is a proportion of the cost of the care and support package or whether it is a NHS CHC funding arrangement.

There are those people who are not previous recipients of the WILG but who are fearful that their future is in the hands of local government and local health board officers who erroneously believe that Direct Payments cannnot be facilitated.They require an unambiguous statement from Wesh Government that all Local Authorities in Wales and all Local Health Boards are required to facilitate a joint package of care through a Direct Payment as set out in Continuing NHS Healthcare: The National Framework for Implementation in Wales[3].

In the absence of legislative change Independent User Trusts (IUTs) should be offered to disabled people and facilitated by the Local Health Board, to enable a person who has become eligible for NHS CHC to consider this option and its suitability for his/ her circumstances.

While we await a successful conclusion of the review set up by the Minister, there needs to be measures in place to enable disabled people in Wales to achieve their personal outcomes and maintain their independence. Welsh Government commitments and aspirations to Social Model of Disability is currently being shown to be hollow when the level of physical impairment and health related needs determine whether a disabled person in Wales can have control of their care and support arrangements through a Direct Payment.

Local Authorities and Local Health Boards need practice directions from Government and training in this matter if we are to avoid further human rights infringements in Wales.

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[1] Julie Morgan AM, Deputy Minister for Health and Social Services Written Statement: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments (Welsh Government 13 February 2020)
[2] See for example letter Welsh Government Director of Social Services and Integration dated 10 February 2016.
[3] Welsh Government Continuing NHS Healthcare: The National Framework for Implementation in Wales (2014).

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WRITTEN STATEMENT BY THE WELSH GOVERNMENT #SaveWILG

TITLE: Welsh Independent Living Grant (WILG) – Update on Independent Care Assessments

DATE: 13 February 2020

BY: Julie Morgan AM, Deputy Minister for Health and Social Services

It is paramount that people’s ability to live independently is not compromised by changes to the way their care and support is arranged and provided. Last July, and following close working with the #SaveTheWILG campaign, I updated Members on the new arrangements I had introduced to provide independent care assessments for people who used to receive payments from the Welsh Independent Living Grant (WILG). These new arrangements were to aid any former WILG recipient who was unhappy with the outcome of their local authority care assessment. This statement is an update on those independent assessments.

Following my last update, ICS Assessment Services were appointed, through a competitive process, to organise and undertake the independent assessments for those who requested these, and 46 former recipients of payments from the WILG took up this opportunity. ICS has now undertaken all of these assessments.

All of the independent assessments completed have now been quality assured by ICS and passed to the respective local authority to consider. This was prior to a discussion between a social worker from ICS and a social worker from the respective local authority about the outcome of the independent assessment, and any effect its findings may have on the person’s current care package. Subsequent to this, a joint meeting is held with the person to discuss the outcome of that discussion, talk through the implications for their care package and agree the future care and support they will receive as a result.

In around half of the independent assessments completed, the discussion between the ICS and local authority social workers has now taken place, with the remaining discussions taking place over the next few weeks. Following these, meetings with care recipients have begun, with outcomes for those people being agreed and starting to be put in place. While it is too soon to comment on the overall outcomes from these independent assessments, some important issues are coming to light.

In a number of cases ICS has found that individuals are currently receiving larger care packages than expected, potentially because those individuals are at the transition point for NHS Continuing Healthcare (CHC). This interface between CHC and direct payments, and the challenges this can cause for care recipients, are issues that have also been highlighted to me at the National Social Care Partnership Board

Having reflected on this, I have instructed my officials to undertake a review of the direct payments and CHC interface. This is with a view to determining whether there are other mechanisms, for example independent users’ trusts, that could be used to ensure people that need more support from the NHS are not put in a position of losing the team of personal assistants they have funded through direct payments and built up over a number of years. If a better more equitable way can be found, this would remove the apparent fear that some people feel about the prospect of CHC.

It is a complex area and I will not compromise the principle of an NHS that is in the public sector rather than in the hands of private individuals, but I want us to see if there is a better way and to do that work quickly.

The United Nations Convention on the Rights of Persons with Disabilities, Article 19, is clear that States must ensure disabled people have access to a range of home / residential and other community support services, including the personal assistance necessary to support living independently and inclusively within their community. The key principle regarding this human right is the ability to choose how you are supported in your everyday personal care.

As the outcomes across the span of independent assessments are confirmed, I would remind Members that the cost of the independent care assessments, and any additional social care that might be identified from them, will be met by the Welsh Government. This is so that there can be no question of changes being made to people’s care and support as a cost cutting measure. The under-pinning principle of my approach is to ensure that outcomes reached are fair and consistent with supporting people’s agreed wellbeing outcomes.

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Birthday Musings… #SaveWILG

Many thanks to everyone for all the birthday wishes – it means a lot and is much appreciated.

I can’t believe twelve months have passed so quickly. I am proud to have published Dancing on Thin Ice – a selection of Tanka and Haiku poems in the last year. It was a year that began with a visit from Julie Morgan AM, who works as the Deputy Minister for Health and Social Services in the Welsh Government. She attended my house to inform #SaveWILG campaigners that she had decided to give those who were unhappy with local authority assessments, the chance to have an independent assessment with extra funds provided by the Welsh Government to pay for any extra support needed.

This seemed like a victory for #SaveWILG campaigners. Indeed, the support given by the Welsh Government has been encouraging and comforting. They appointed ICS to undertake the independent assessments and the vast majority of these were completed by the end of October 2019.

However, WILG recipients are still stuck in limbo almost six months later. This is not due to any failing by the Welsh Government or ICS, but local authorities are still keeping us waiting, as they rubber-stamp the independent assessments.

I am really not knowing which way to turn at the moment. Life remains very insecure until I find out what the reassessment says about what support I can expect in the future. I am subsequently unable to decide where to put my energies. Do I write a new book, create some new poems or take a well deserved holiday before deciding on my next venture? I can’t make a decision on this until I know how much my independent assessment has been coloured by their meetings with WCBC.

I was told last week, that I could expect to hear back from Adult Social Care at the beginning of this week. At close of play today (Wednesday), I have still not heard anything. I believe a verdict is imminent, as I know a decision has already been made, but being kept in the dark about this is seriously damaging my physical and mental health.

The anxiety all this has caused me and other WILG recipients, is appalling. We should all be claiming compensation for the way we have had to wait, but I am sure we all agree that we just want it over and done with – as long as we end up with the support we need, to live on a level playing field with the rest of society.

Once again, many thanks for my birthday wishes and I hope that by this time next year, I am looking forward to the future with some degree of certainty.

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#SaveWILG Campaign Relaunched

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As many of my regular readers will know, I have spent the last 5 years campaigning to protect independent living for disabled with high support needs across Wales. In February 2019, we made a break through and the Welsh Government agreed to offer independent assessments to all recipients of the Welsh Independent Living Grant who did not agree with the decisions made by their Local Authority.

Since February, the Welsh Government have pulled out all the stops to make sure that WILG recipients have been assessed properly. They recruited the assessment company, ICS, to carry out the much needed reassessments and the majority of these were completed by the end of October 2019. WILG recipients were looking forward to resolving this issue before Xmas 2019, so that they could look forward to the future some degree of certainty.

However, WILG recipients are still stuck in limbo land and are unable to make plans for the long term future due to the fact that Local Authorities are dragging their feet and refusing to sign off the assessments made by ICS.

The fact that LAs are involved in this process is a contentious one as these are supposed to be independent assessments.The context is that these are being undertaken by ICS without its social worker having sight of any previous care assessments undertaken. This is as ICS did not want its social workers unduly influenced by what a local authority had undertaken or produced previously. Consequently, at the point ICS has concluded and quality assured its assessment on a person it does not know how the outcome of this compares to that which the person’s local authority has undertaken previously. In addition, a local authority may have some key information about a person or their care which may be relevant if ICS had known this.

This seems fair enough and WILG recipients have nothing to hide so would welcome LA involvement. If only it were that easy. I have had no reply to countless emails sent to WCBC this calendar year even though it is in the best interest of WCBC and myself to get this situation sorted once and for all. I must make it clear that I am very thankful to WCBC for agreeing to fund 24/7 support for myself while we await the outcome of the assessment. I appreciate this, but would still like to secure a long term plan that I know will see me through what is left of my life. Surely, a bit of security is not too much to ask while I continue to fight a progressive, genetic disease of the nervous system…

The stress and anxiety that all this indecision and uncertainty is causing, recently forced me to spend a period of time in hospital with a nasty chest infection. I am slowly getting back on my feet, but this whole episode has just renewed my determination to get this this whole sorry mess sorted out once and for all.

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#SaveWILG Tweets

We have not forgotten…

A Decade of Growth…

The annoyingly nameless decade that is rapidly drawing to a close has been a time of desperate struggle for many sick and disabled people living, or trying to, in these bleak times of austerity.

The Conservative – Lib Dem coalition was unleashed on the great British public back in May 2010. They immediately announced that they would be making severe cuts to the benefits system, and public services in order to balance the books. This political choice would target the poor and vulnerable, as they were held responsible for the global financial crash.

I don’t have the time to go through the last decade month by month, but suffice to say that these austere policies set the mood for the entire decade. I remember watching the TV news with a feeling of dread, as I knew what would follow would damage our society in ways that we hadn’t even dreamt of.

I had just escaped from an unhappy marriage, and had moved in to my new bachelor pad where I was to employ a team of personal assistants to help me to live independently. Unfortunately, I was in and out of hospital during 2010, as I suffered a nasty bout of pneumonia as well as having three operations to remove kidney stones.

This wasn’t going to be an easy decade, that much was obvious. I had a decision to make – do I give in and accept my position as a worthless member of society, or do I stand up for myself and fight back against the establishment? – I decided on the latter option…

I was forced in to politics as an activist, by my repressors and they have created a monster that will not rest until social justice is served to each and every one of us. It all began when the coalition government introduced the bedroom tax, and WCBC targeted me as someone who should be paying for having more than one bedroom. I wasn’t standing for that, and decided to make a piece of art in protest, that appeared in the Daily Mirror and had the desired impact. Combining art and activism was something I would continue to do with success throughout the decade.

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One of 20 postcards created for the Postcards from the Edges initiative. 

Fortunately, I seem to have blossomed with my back against the wall. This is particularly evident through the success of the #SaveWILG campaign, through which I have made numerous friends, enjoyed trips to Cardiff and Westminster and built political connections on a cross-party basis. We have held an art exhibition to promote the campaign and even had a awareness day in Wrexham, that saw musicians, poets and comedians show their solidarity. The postcard campaign that we ran, also saw the campaign gather support from acclaimed film director Ken Loach, Shadow Chancellor John McDonnell and even Jeremy Corbyn.

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Jeremy Corbyn meets Nathan Lee Davies at the Welsh Labour Conference in April 2018. 

There is still some work to be done to finalise everything with regard to independent living for former ILF recipients in Wales, but sincere thanks must go to everyone who has helped make this campaign a success.

The fact that I have also managed to publish two books and receive an Honorary Fellowship from Glyndwr University within this period, is something that I am very proud of. It seems that I can be productive with the right levels of support. It also helps not having to put up with a significant other and her three noisy children. Married life is just not something I am cut out for. Of course, I get lonely at times, but I do not think that a conventional relationship is the answer for me. The need to remain focused is more important at this moment in time.  I wrote a blog about my personal situation earlier this year. You can read it by clicking here. 

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Receiving an Honorary Fellowship from Glyndwr University.

Whilst enjoying the company of three great friends at the pub yesterday, I was comparing my situation with the one I found myself in at the dawn of the previous decade. There is no doubt that the work I have done over the past ten years has put me in a stronger position for the difficult years ahead. Let no one be in any doubt that the Johnson regime will lead to considerable difficulties for many of us, but it is no good just moaning and worrying about it all. The time to act is now, and we all have a part to play in creating a society that works for the many, not the few.

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Good friends are hard to find, but I have been extremely fortunate. 

I have a few exciting projects lined up for 2020 and beyond, such as developing my poetry, working on my third book and creating art exhibitions to try to reach the politically confused.

Whatever I end up doing, it is sure to be a bumpy ride. Buckle up…

BBC News: Disability Work Opportunities Under Threat

The BBC have written a shocking story about the potential closure of work opportunities for disabled people in the Wrexham area, due to further council cuts.

This is depressing news, but hardly surprising under a Conservative/Independent led council with a history of putting profit before people.

This cannot be allowed to happen, and I would offer support to anyone interested in campaigning to stop this measure.

I have included yesterday’s BBC report below.

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Two projects which provide work opportunities for about 75 people with a disability look set to be closed in the latest round of council cuts.

Wrexham Council plans could hit the Cunliffe enablement centre in Rhosddu and the Erlas garden project.

It closed other schemes last year as part of an ongoing disability services review aimed at saving £334,000.

Council bosses said they would find other ways to support those affected.

The review has already led to the closure of Le Cafe and Portable Appliance Testing in Rhosddu, along with the Coverall laundry in Rhosymedre.

Councillor Joan Lowe, cabinet member for health and adult social care, said the Cunliffe and Erlas projects “deliver good services that are well regarded by service users, their families and carers”.

“There are, however, a number of issues and challenges with the sites and facilities that mean they do not offer the best opportunities for community participation and can limit community inclusion.

“The proposal is for the council to reshape day and work opportunities services to deliver more flexible, person-centred services that are fit for purpose, offer quality, are sustainable and make more effective use of available resources.”

The changes to the service form part of cuts agreed by executive board members for 2019/20, which were met with anger by opposition councillors last year.

There are currently 39 people supported at the Cunliffe Enablement Centre and 36 at the Erlas Garden project.

The latest plans will be discussed by councillors at a scrutiny committee meeting on Wednesday, according to the Local Democracy Reporting Service.

 

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Pulling Myself Together

I have been a little out of sorts over the past week or so, thanks to a chest infection. Thankfully, I have come out the other side and am feeling stronger with every passing day.

It is always scary to be inflicted with a chest infection, as I am only too aware that such infections usually finish off my brothers and sisters who live with Ataxia. I didn’t want to join those unlucky few at this time. There is an election to win before I go anywhere…

The article I have put together below, just sums up some of my moods and feelings over the past few days, while the madness continues with my valued members of staff also being stricken down by illness.

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FACEBOOK STATUS 1:

I will probably have to stay offline for the next few days as I have just seen the doctor who said I have a chest infection. Bloody hell, this is all I need. I have to take this seriously as living with Ataxia is enough on it’s own without the added complications of a chest infection. I am now on antibiotics so hopefully they will do the trick as I do not fancy a stint in the Maelor. Thankfully, I have some excellent PA’s who will help me get over this and I will be back to full strength in no time.

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FACEBOOK STATUS 2:

I have just had another home visit by a GP who has put me on a stronger set of antibiotics. Hopefully, these will calm me down and stop me from having regular panic attacks. If I can get a good night sleep, I am sure that will help me loads.

I have also had a letter from ICS detailing the protest for them to make a decision. Basically, I think they were just playing for time. I am too exhausted to think of the ramifications of this. That is a battle for another day…

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FACEBOOK STATUS 3:

A third out of hours doctor visited me last night and provided me with the super strength antibiotics that I need to shift this infection off my chest. It seems to be doing the trick and I am regaining my appetite while breathing has become easier.

I am disappointed that I still do not have the strength needed to attend the Nick Whitehead Theatre this evening to vote for Helen Grout as Wrexham’s Labour Party candidate for the forthcoming General Election. I am totally pleased to openly back Helen as the only candidate capable of making a real difference to the community of Wrexham as a whole.

I am also pleased that my good friend, Julie Rogers-Owen, will be attending the Hustings and voting in the only sensible way. If the people of Wrexham, really want to see positive politics in action then it is crucial that Labour Party members vote for Helen Grout tonight.

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All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

All work and no play makes Nathan a dull boy.

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I have two piles of books in my living room. They need shifting if only to quieten the taunting voices in my head. You know it makes sense…

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Please read the following article: Dancing on Thin Ice: Available Now

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There is still much work to be done on the #SaveWILG campaign. It seems as if recipients from several Local Authority areas are still waiting on the results of their assessments. I want to emphasise that this is not because of any failing from ICS Services – the independent assessment company who have been put in charge of carrying out the reassessments – but because we are still waiting on the Local Authorities that let us down in the first place. This appears to be a totally ludicrous situation, as it was because we had no confidence in the Councils in the first place, that we launched the campaign. They are still making us wait by holding up discussions with ICS Services. I want to make sure that this situation is sorted out way before the upcoming festive period, as all WILG recipients deserve this after the torrid time they have been put through.

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Please watch the following video before deciding what to do at the Ballot Box on December 12th:

 

#SaveWILG Campaign Update

I have received an update from the Welsh Government, on their efforts to provide independent assessments to all WILG recipients who requested one. It read as follows:

All 14 local authorities who have former WILG recipients who have requested an independent assessment now have a data sharing agreement in place with ICS. As a result ICS now has basic data on the majority of the 50 recipients who have requested an independent assessment in order to progress these. This does not include details of previous care assessments or care plans as both ICS and us wanted their social workers to go into this process without any preconceptions of people’s care needs.

Consequently ICS is now arranging appointments for their social workers to undertake these and has already undertaken first appointments with a number of the 50 recipients across Wales. Following these ICS’ social workers will write up respective care assessments for submission to ICS’ quality control, before discussion with the relevant local authority representative and subsequently a joint discussion with the former WILG recipient concerned. On the basis of the current position ICS estimates it will have completed all assessments by the end of November. 

The reassessment that I received went very well, and was not hard work at all. I had feared that it would be much more invasive than it was. The social worker from ICS was both professional and friendly. She listened attentively to the case we made for 24/7 support, and said that she would be in touch with a decision in between three and five weeks. That was on October 1st.

It is good news to hear that ICS plan to have all the assessments complete by the end of November. This is something that I believe is very important, as the WILG recipients affected do not want another Xmas of worry and stress.

I have spent the last two Christmas periods busy on Twitter, while the rest of my family have enjoyed Xmas dinner. I could not detach myself from the fight to #SaveWILG, even during the festivities. My very way of life was on the line, and I was in no mood to join in with the celebrations while WILG recipients were struggling in such a way. Fingers crossed that this year I will be able to enjoy some Turkey, rather than the meagre meal of beans on toast that I have stubbornly eaten for the past two years in order to make a point.

If any WILG recipients, or their families/friends, still have concerns over the assessment process then please do get in touch.

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