Author: nld01

The Dreams In Which I’m Dying…

The following blog includes songs by Gary Jules (Mad World) and John Farnham (You’re the Voice). I am not claiming any artistic influence on these songs at all.

I was watching Murder Made Me Famous on the Really Channel at some godforsaken hour last week as I tried to keep my eyes open and delay the uncomfortable hours that were sure to follow.

This particular episode concerned the crimes of Reverend Jim Jones –  an American religious cult leader who, along with his inner circle, initiated a mass suicide and mass murder in JonestownGuyana.

It really is a fascinating tragedy and I encourage everyone to read more about the Peoples Temple as only by learning lessons from the past can we hope to build a brighter future for everyone…

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Things have changed a lot in the past forty years, but I still fear that mass murderers such as Reverend Jim Jones exist, albeit in different forms.

It has been a long weekend full of three draining panic attacks. The lack of support and information from Local Authorities in relation to Welsh Independent Living Grant recipients is really affecting both my mental and physical well-being. Two of the panic attacks were brought on by madly rushing to use the loo as the urge to relieve myself comes on all of a sudden. My body is unable to react quickly enough, so accidents do happen.

I also suffered an attack before going to bed on Friday night, as I can almost predict the hours of discomfort, pain and panic that lie ahead during lonely nights without support. I am a born fighter – and I do not have any plans to slow down – but the pressures being put upon me are becoming increasingly difficult to cope with,  as my progressive disability continues to eat away at my nervous system.

I require 24/7 support NOW if I am to continue living independently and contribute to my local community. This is not something that I want for selfish reasons, but simply something that I NEED.

I found the following article to be very illuminating and it is certainly something that I can relate to. It was written by Mike Sivier from Vox Political and can be read by following this link.

It seems that poor and vulnerable people are still being controlled and manipulated today, in a way that Reverend Jim Jones would be proud of.

Don’t get me wrong, I am proud that the Welsh Government have listened to #SaveWILG campaigners and are now acting accordingly. I have received encouraging emails from ministers and civil servants who are working on implementing a new policy to protect independent living for WILG recipients.

It is not the current Welsh Government that I have a problem with, but the previous neo-liberal regime, whose mistakes I am now paying the price for. Local Authorities also deserve to shoulder some of the blame for refusing to provide adequate support for those that need it, purely for selfish financial reasons.

I hope I am able to go on for many years, but if I were to pass away tomorrow I would guess that someone at some level would say that “lessons need to be learnt”. I am still breathing, so why can’t the relevant action be taken now to improve my quality of life? I understand and am happy that the Welsh Government are doing all they can to push through implementation as quickly as they can, but in the meantime I am going to use the extra money in my Direct Payments account to fund the extra support that I need.

I have since found out that I will be unable to offer a PA anything more than the minimum wage to stay with me overnight due to ludicrous pay rates set by Wrexham County Borough Council. I should be able to pay staff working through the night, the same as I pay a member of the staff throughout the day. How can WCBC justify paying different rates for day and night? It appears as if my next fight for justice has been earmarked.

The book that I am itching to write, along with the work of art that I have conjured in my head will just have to be put on hold again…

All I know is that I am not going to sit in silence or live with fear any longer as I believe  justice is on my side. I can see all the inadequacies of the current chaotic system of social care from my position on the moral high ground and I will continue to keep raising my voice until disabled people, in particular, are able to live on a level playing field with the rest of society.

 

Plaid Cymru Press Release – Set Out Clear Timetable to Support Disabled People #SaveWILG

Rhondda AM Leanne Wood has called upon the Labour Government to move fast to ensure that disabled people are not left out of pocket.

The Plaid Cymru Shadow Minister for Social Justice and Housing called upon Ministers to match words with deeds after they performed a U-turn on reinstating in all but name the Welsh Independent Living Fund last months after months of pressure.

Julie Morgan, the deputy minister for health and social services, wrote to local authorities to ask for a halt to the closure programme for the Welsh Independent Living Fund and its replacement with a system of council-funded support.

There will now be new assessments for former recipients with a view to new support packages allocated by their local council.

In a letter to Julie Morgan, Ms Wood called for a “clear timetable” to restore financial support for disabled people living at home.

Leanne wrote: “I am writing to you following last month’s announcement that an independent social work assessment will be offered to all former Independent Living Fund recipients who are unhappy with their new care and support package.

 “You also committed to providing additional funding for councils to fund independence assessments and any additional care hours that may result from these assessments.

 “I appreciate that we are only a month on from this welcome statement in the Welsh Parliament but the reality is that people are continuing to struggle without adequate support.

 “A clear timetable for carrying out these assessments and restoring the financial packages for disabled people is required as a matter of expediency to provide clarity and hope for people in need of extra support.

 “On behalf of disabled people and their families, can the Welsh Government provide that timetable as soon as possible please?”

ENDS

WLG Steering Committee Statement on Chris Williamson MP

You will no doubt have seen that Chris Williamson, the Labour MP for Derby North, has been suspended by the Labour party and had the whip withdrawn pending an investigation into his conduct following complaints, including from other Labour MPs. This relates to comments that he made at a Sheffield Momentum meeting about Labour’s approach to anti-Semitism and his booking of a room at the House of Commons for Jewish Voice for Labour (JVL), to enable them to show a film about the suspended Labour activist, Jackie Walker.

The initial announcement of an investigation into these matters was only later followed by the suspension and withdrawal of the whip, seemingly in response to demands from a number of prominent party figures, including the Deputy Leader, Tom Watson, and a letter from the Tribune Group of 38 Labour MPs, which includes the Welsh MPs, Chris Elmore, David Hanson, Stephen Kinnock, Anna McMorrin, Owen Smith and Jo Stevens.

There has been much discussion of this issue, within and beyond the Labour party, and the WLG Steering Committee felt it important to put our own position on the record, via the following statement:

The Welsh Labour Grassroots (WLG) Steering Committee is concerned by the suspension of Chris Williamson and by much of the public discussion of his case. We accept that the party needed to investigate the issues that gave rise to the complaint against him but we believe that the suspension and withdrawal of the whip was unfair and unnecessary and that much of the commentary by Labour politicians and media commentators misinterprets Chris Williamson’s comments and misrepresents his attitude towards anti-Semitism.

Chris Williamson has been accused of suggesting that Labour has apologised too readily to people in the Jewish community who may have experienced anti-Semitism. It seems clear to us, however, that this was not his intent; rather, he was seeking to argue that Labour politicians have often been too quick to accept questionable claims about the scale of the problem and ill-informed criticism of its handling of it, rather than accurately quantifying the incidence of reported cases* and acknowledging the party’s positive record in challenging racism, while admitting that more could still be done.

One may agree or disagree with this view, or feel that Chris Williamson should have taken greater care in the way he expressed it (as he himself appears to accept in his public apology) but it is surely well within the scope of legitimate debate. No significant Labour officer or elected representative has disputed that anti-Semitism is abhorrent or sought to deny that it exists within the Labour party. But to seek to close down any discussion about the prevalence of anti-Semitism or the best way of fighting it is to undermine Labour’s best traditions of healthy debate and to hamper efforts to root out prejudice and address the conditions that allow it to develop. The conduct of some commentators also risks creating a “hostile environment” in which anyone defending Palestinian rights and criticising the Israeli state fears being tarnished as “anti-Semitic”.

Chris Williamson has a long record of actively opposing racism and fascism in all their forms – indeed, a more impressive record in this respect than many of his detractors can claim. Like Jeremy Corbyn, he has distinguished himself by speaking his mind fearlessly on a range of issues, from Labour’s housing policy to the campaign to undermine the elected government of Venezuela. Unlike many other MPs, he has been a strong advocate of democratisation within the party and a loyal supporter of our elected Leader. 

We find the ‘trial by media’ to which Chris has been subjected deeply unedifying; those who object to his comments and actions are, of course, within their rights to submit formal complaints but to air their grievances so loudly and publicly can only undermine Labour at a time when we should be united in holding the Tory government to account and risks denying Chris Williamson a fair hearing.

We note that the Labour NEC decided some time ago to abandon the automatic use of administrative suspension pending the outcome of a disciplinary complaint, in all but the most serious cases (such as when the member in question poses some sort of ongoing threat to others). We see no justification for suspending Chris Williamson and call for his suspension to be ended and the whip restored.

WLG remains implacably opposed to anti-Semitism, along with all other forms of racism, such as Islamophobia, and bigotry and prejudice of any kind. We offer our unconditional solidarity to all those who encounter such hatred, regardless of whether we otherwise agree with them politically. We believe that all cases of anti-Semitic abuse should continue to be dealt with through the party’s disciplinary procedures and we applaud the steps taken under Jeremy Corbyn and Jennie Formby to implement the Chakrabarti recommendations, including the expansion of the NCC to deal with cases more quickly, as well as the efforts made to educate our members about the issue.  

We believe, however, that the tone of public discussion on this issue often militates against the kind of frank and serious discussion needed to develop effective solutions. The strident calls for punitive action against Chris Williamson are an unhealthy symptom of this problem and we believe he deserves our support in seeking a fair hearing.
_____________________
*Statistics published by the General Secretary reveal that, over the last ten months, complaints received have led to 453 members being investigated for anti-Semitism; it has been pointed out that this amounts to 1/12th of 1% of the total party membership.

Petitions Committee on Senedd TV

I have written to the Deputy Minister for Health and Social Services in order to encourage her team to publish a timetable which will allow WILG recipients to plan their futures with certainty, and extricate themselves from limbo land. WILG recipients, such as myself, are still struggling after years of neglect from clueless local authorities. and everyone at the #SaveWILG campaign has faith that Welsh Government now fully understand these difficulties and will be implementing their proposals very soon.

On Tuesday, the Deputy Minister, Julie Morgan will be speaking with the Petitions Committee on Senedd.tv at about 10pm. The meeting will be available to view whenever you can on the website. I am looking forward to hearing constructive plans that can assist me out of the current predicament I find myself in – inadequate care and support is taking it’s toll on my physical and mental health…

***

Dear Petitioner

Your petition will be considered at our next meeting on Tuesday 05 March at 9.00.

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

http://senedd.assembly.wales/ieListDocuments.aspx?CId=430&MId=5288&Ver=4

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

http://www.senedd.tv/

Kind regards,

Petitions Committee

D0jkv-0X4AA6G8c

 

More Questions than Answers…

It has been an exciting period for the #SaveWILG campaign after we made a huge breakthrough a couple of weeks ago. We are now in a position of working with Welsh Labour rather than campaigning against them, which is a position we are all happy with.

BREAKING NEWS… #SaveWILG

WREXHAM MAN’S DISABILITY CAMPAIGN WILL LEAD TO THOUSANDS OF LIVES BEING IMPROVED.

However, amidst all the congratulatory messages and kind words that I have received in the past few weeks, it has become clear that there is still much work to be done in order to protect independent living for WILG recipients.

While it is clearly a positive that the transition period has been paused and WILG recipients are now entitled to a independent social worker to help decide on their care package, there remains much uncertainty and confusion about the next steps. At the moment, WILG recipients – including myself – are stuck in limbo land between clueless local authorities and a Welsh Government that has to focus on Brexit. 

In the meantime, 1,300 or so disabled people with high care and support needs are suffering. We have every reason to be proud of what we have achieved, but there cannot be any celebration until each one of us are living the lives we deserve to be.

In the days since Deputy Health Minister Julie Morgan announced her new and exciting plans I have received many emails from confused recipients who want to know what happens now. People have been going through stress and worry about the loss of WILG since November 2016 and the confusion remains.

We need a clear timetable from the Welsh Government of when we can expect our reassessments to take place as people are continuing to struggle without adequate support. A timetable would allow people to plan their lives and provide them with tangible hope for the future.

Looking at the statement produced by the Deputy Minister for Health and Social Services on February 12, I personally think that every WILG recipient should have a firm offer of a reassessment under the ‘revised arrangements’ with an explanation as to why this is happening. The onus should not be on the recipient to request a reassessment. Those who have had a reduction or had their care provision frozen should all be reassessed under the tripartite system.

Mark Drakeford’s new Welsh Labour brand, should be proud of listening to the concerns of disabled people and their families and acting accordingly,  but they need to act urgently to put their promises into action and provide us all with answers to our questions. We are doing our best to understand that the wheels of politics do not tend to run quickly, but unfortunately patience is not a virtue that WILG recipients can afford. 

We have written to the Deputy Minister for Health and Social Services and await her response with anticipation. 

Thanks to Wikipedia for the following:

John Lester “Johnny” Nash, Jr. (born August 19, 1940) is an American reggae and pop music singer-songwriter, best known in the US for his 1972 hit, “I Can See Clearly Now“. He was also one of the first non-Jamaican singers to record reggae music in KingstonJamaica.[1]

URGENT ACTION NEEDED: Disabled People’s Lifeline at Risk #SaveFDF

I was really disappointed to receive an email from Jan Thomas this afternoon, informing me of the struggles encountered by Flintshire Disability Forum (FDF) in regard to attracting the funds needed to continue their vital community work.

The FDF lost it’s Flintshire County Council  (FCC) funding last September, and are struggling to attract funds because sadly service users are those forgotten people that are no longer flavour of the month, they are the people who fall through everybody’s net.

Although the Welsh Government talks about independent living, loneliness and isolation, health and well-being  and the Social Model of Disability this DOES NOT translate into funds on the ground.

The Directors of the Charity thought long and hard about the future and the best estimate is that we have funds for only 3 more months ie until the end of June.

I am including below a template letter that we would encourage people to send to FCC to urge them to reconsider their decision. If you would prefer to send your own words based loosely on the same information please feel free to do so.

If you can tell your own story that would carry more weight.

Many thanks

Please email  Neil.J.Ayling@flintshire.gov.uk

and Christine.M.Jones@flintshire.gov.uk

***

Dear Mr Ayling.

I am writing this email to support TheFDF Centre for Independent Living.

TheFDF formerly Flintshire Disability Forum has been supporting disabled people in Flintshire for more than 20 years, they are well known across the County. Particularly for the support they give to people needing to apply for benefits PIP, ESA, UC, housing benefits they offer advice and information.

2 years ago they set up a befriending scheme for those people who cannot leave their own homes, they run 3 social groups every week which brings people together for company.

I understand that TheFDF has only sufficient funds to keep going for another 3 months, their funding from Flintshire County Council ended in September 2018. The service has been replaced by 4 other organisations that have received funding from Flintshire County Council for 5 months that is £88,750 of council taxpayers money.

BUT nobody knows how to access the new service as they are all based outside of Flintshire, FDF has a drop in service in Mold Town Hall that is heavily subscribed to.

It seems that FCC has given the funds to a signposting service that is not fit for purpose. Please reconsider your decision for the sake of the 500 people that currently use FDF and for those other disabled people that will need support in the future.

YOUR SIGNATURE AND THE ORGANISATION YOU REPRESENT.

 

Motion – National Independent Living Support Service #NILSS

The following article was taken from the Disabled People Against Cuts (DPAC) website and is certainly something #SaveWILG campaigners will be supporting as we continue to work with the Welsh Government to formulate an independent living scheme.

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Disabled People Against Cuts and our allies in the Reclaiming Our Futures Alliance are campaigning for a National Independent Living Support Service capable of upholding disabled people’s rights to independent living and building on what was so effective about the Independent Living Fund before it was closed in spite of enormous opposition in June 2015.

Please call on your union branches and CLPs to pass motions supporting the campaign. Thanks to Sean McGovern for the wording of a suggested motion as below. If you would like someone to speak at your branch meeting please send details to mail@dpac.uk.net.

For information about our vision of a National Independent Living Support Service, download this document: NILS-summary-doc-2

 

National Independent Living Support Service Motion

There is no doubt that social care is in crisis. A crisis brought about by years of Conservative governments’ ideological austerity policies. Today we have a failing system unable to meet current need; and certainly, unfit to respond to predicted future growth.

Bringing social care under a struggling NHS umbrella is not the answer. Indeed, the overwhelming majority of disabled people with social care packages do not receive healthcare interventions through support packages. No, healthcare and social care serve very different kinds of need.

Therefore, this Conference calls upon a newly elected Labour government to establish a National Independent Living Support Service (NILSS). A Service:

  • that gives new universal right to independent living
  • enshrined in law and delivered through a new national independent living service co-created between government and Disabled people,
  • funded through general taxation and managed by central government,
  • led by Disabled people and delivered locally in co-production with Disabled people.

Marrying social care to the NHS further medicalises disability in addition to denying the very things that disabled people are crying for…Independence, Choice and Control – things only deliverable by the establishment of a National Independent Living Support Service.

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