Wales

Wrexham man’s disability campaign will lead to thousands of lives being improved

The following article was taken from the Leader Live website. I am claiming no credit for writing this article which also appears in the Leader newspaper. 

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Improvements have been made to the way care is delivered for more than 1,000 disabled people in Wales to help ensure they get the support they need to live independent lives.

Local Assembly Member, Lesley Griffiths, has welcomed the Welsh Government’s latest announcement and congratulated Wrexham resident, Nathan Lee Davies, who headed a strong campaign and made representations to the Deputy Minister for Health & Social Services, Julie Morgan AM, on the matter.

Concerns regarding the Welsh Independent Living Grant (WILG) were initially raised when it was announced the responsibility for the scheme, which had been introduced after the abolition of the Independent Living Fund (ILF), was to be passed onto local authorities to manage from April this year. Nathan feared the changes would have a detrimental effect on his wellbeing and initiated the ‘Save WILG’ campaign.

The hard work has paid off as under the latest proposals, additional measures have been put in place to ensure nobody who was once in receipt of WILF, and its predecessor ILF, misses out as a result of the changes. An independent social work assessment will be offered to all former ILF recipients who are unhappy with their new care and support package and would like a second opinion.

The Welsh Government will provide additional funding to local authorities for the cost of the workers to carry out these independent assessments and additional care hours that may result from the assessments.

Lesley Griffiths AM said: “It was vitally important that people who previously received payments from the Welsh Independent Living Grant were not negatively affected by the transition. These latest measures will help ensure the new system is implemented properly, assuring levels of care and support throughout Wales are delivered consistently.”

“There’s no doubt the Save WILG campaign made a real difference. Having met with Nathan a number of times, it was always clear to see the extra stress and anxiety this was causing him. I am pleased to have helped facilitate the Minister’s meeting with Nathan in Wrexham and I hope all the individuals who feared they were going to be adversely affected are happy with the outcome.”

The £27m Welsh Independent Living Grant (WILG) was originally set up in 2015 following a decision by the UK coalition Government to close the Independent Living Fund.

Welsh Government consulted with partners to develop a long term strategy. A two-year transition period began in April 2017 in which all former ILF recipients in Wales who were now in receipt of payments under WILG would have their care needs assessed by their local authority to ensure a care plan was agreed and support package put in place.

While the transition period resulted in the majority of recipients being satisfied with the new arrangements, some former ILF recipients, who had not been subject to a care assessment since 2015, were concerned by the change in approach, with the reassessment causing tension in some cases.

The announcement by the Welsh Government aims to address the inconsistencies, with evidence suggesting the variation between local authorities warrants a change in direction and the Welsh Government has written to local government leaders to request a pause of the transition with immediate effect in order to bring in revised arrangements.

U-turn on disabled living grant welcomed by Plaid

The following article was taken from the Plaid Wrecsam blog. I take no credit for the article and thank everyone at Plaid for their support.

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Today sees a Plaid Cymru-initiated debate on the Welsh Independent Living Grant in the Senedd. 

Coincidentally, the Welsh Government yesterday announced it was pausing its controversial plans to axe the grant, which enables disabled people in Wales to live independently and manage their own affairs. The pause comes after relentless pressure coordinated by Wrexham campaigner Nathan Lee Davies and many others. The debate was intended to maintain the pressure on the Labour Government, which had decided to follow the Tory line in Westminster and axe the grant.

Responding to the decision by the Welsh Government to bring in revised arrangements for the Welsh Independent Living Grant, Leanne Wood AM, Plaid Cymru shadow minister for social justice said:

 

“The Welsh Government should just have the guts to admit it got this wrong from the very beginning. After the proposed changes are filtered through, we should have a situation where no disabled person has lost out on care. However, we will be spending considerably more money on administration and reviews to get to this point than if the Welsh Government had just adopted the Scottish and Northern Ireland approach of retaining the fund – as we argued for at the time. 

“The problems identified that have led to this suspension of the transition were entirely predictable and have caused disabled people a great deal of anxiety and stress. All because Welsh Labour have been too stubborn to listen to disabled people and their own party activists over the bureaucrats in local authorities.”

Llyr Gruffydd, Plaid Cymru AM for North Wales, has campaigned on behalf of WILG recipients for the past year and said:

“Without the tireless campaign of disability activists such as my constituent Nathan Lee Davies, it’s unlikely this U-turn would have happened. Disabled people would have faced yet another significant cut to the support they have and a loss to their independence. 

“Questions have to be asked about why the Welsh Government made the wrong decision in the first place and what it really says about how much it listens to disabled people. Where has the government been before now in acknowledging its proposals wouldn’t work?

“Coming twenty-four hours before Plaid Cymru’s debate to save the Welsh Independent Living Grant, they clearly did not relish defending their failed policy.”

 

Closure  of the Welsh Independent Living Grant #SaveWILG

The following article was taken from the excellent blog by Luke Clements – a Professor of Law at Leeds University and a Solicitor. 

We really appreciate all the support from Luke Clements and the formidable Ann James in our bid to #SaveWILG. Let’s hope the Welsh Government actually listen to the mounting critics of their decision to close WILG.

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A case of Wales following in the footsteps of England?

While attention is focused on the countdown to leaving the European Union, one should not lose sight of the impending closure of the Welsh Independent Living Grant (WILG) which has been earmarked for the 31 March 2019.  The impact of the closure is already being felt by people who have transitioned from the WILG to Local Authority funded care and support.

A strenuous and valiant campaign to # SaveWILG has been led by Nathan Davies.

The sustained #SaveWILG campaign has gathered momentum in the final weeks before the proposed closure and has been given greater impetus by a letter from the Deputy Minister for Health and Social Services.  In this letter Julie Morgan, sets out the outcome of the Deep Dive Review that was put into place by the previous Minister to evaluate the process and outcomes of the re-assessment of WILG recipients who have been re-assessed for Local Authority Services. The letter notes that 157 disabled people (of the 1,174 people who have been re-assessed – i.e. 13%) have suffered a reduction in their care and support provision.

The Minister has since met with representatives of the #SaveWILG Campaign Group who have presented her with a dossier of evidence to reconsider her decision.

The BBC Wales Live news item https://www.bbc.co.uk/iplayer/episode/b0c0x936/bbc-wales-live-23012019(at 8 minutes 40 seconds) has highlighted the impact on disabled people who have been reassessed and the impact on carers. The long term costs of leaving disabled people with high level care needs with insufficient support was highlighted by Tanni Grey Thompson who supports the continuation of central government funding.

Nathan Davies on behalf of the #SaveWILG  has written an impassioned open  letter  to the First Minister for Wales https://nathanleedavies.wordpress.com/2019/01/28/open-letter-to-first-minister-mark-drakeford-savewilg/  in which he sets out the deep concerns of disabled people who have been moved to local authority care and support, reminding him that during the campaign for the office of First Minister, and in response to a question from the BBC he said,

“… if an independent evaluation shows the new system is not working as well as the old one then I would be prepared to reverse it because this is money intended for a very specific number of people for a very specific purpose”.

One must reluctantly come to the conclusion that the Welsh Government is following in the footsteps of England, albeit three years later.  The closure decision has given scant consideration to the evidence from England on the effect of closure on disabled people and their carers and Wales has been prepared to continue along a trajectory that risks destabilising the established care and support  of WILG recipients.  A critical analysis of the intended closure of the WILG can be found by clicking here.

The Deep Dive Review, referred to by the current Minister for Health and Social Services, was intended to be an independent audit of the process, impact and outcomes of assessing WILG recipients for transition to local authority services. Embedded in the review was the possibility of reversing the decision. If not it was merely a cosmetic exercise.

The detail of the Deep Dive Review has not been made public as yet. There is neither information as to whether local authorities provided each previous recipient of WILG with independent advocacy nor if they offered a carers assessment to relevant carers.

It is an indictment of a review which was supposed to give reassurance to disabled people about the veracity of the evaluation of the process of transition to local authority services, that disabled people were not consulted about their experience of the process  and their satisfaction with the outcomes.  Local Authorities representatives were however consulted and provided reassurance to the Minister that no major implementation issues had come to light.

The letter from the Minister to the #SaveWILG campaign notes that some of the previous recipients of WILG are no longer eligible for social care and have been moved to NHS Continuing Health Care.

Unlike in England, recipients of NHS Continuing Health Care are prevented by statute from having a Direct Payment to arrange care and support. This is a significant impediment to independent living and yet this has not been attended to in legislation (although in England this barrier has been removed).

It now rests with the Minister of Health and Social Services to reverse the decision to close the Welsh Independent Living Grant and to offer a clear view on how Wales will meet the needs of disabled people with complex needs.

The case note R (CWR) v Flintshire County Council(2018) is a salutary reminder of the experience of a disabled person in need of care and support in Wales under the Social Services and Wellbeing (Wales) Act 2014 and illustrates the understandable fears of disabled people when being assessed for care and support.

The case is also a clear reminder that it is possible to effectively challenge unfair, unlawful or irrational decisions by local authorities.

Nightmare on Finney Close

When I told my Social Worker that I was in need of 24/7 care in my own home, she actually laughed at the prospect of anyone in my local authority receiving such a level of care and support. Read the following paragraphs and you might discover why I NEED round the clock assistance to function as part of my community.

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22.00: I was struggling to stay awake as I finished off my latest email to the Welsh Government, something that I knew in my heart of hearts would probably be ignored again. The #SaveWILG campaign has come so far and achieved a great deal, but still those in control refuse to listen and take note to Welsh citizens. The fight continues, but it would have to wait until the morning because I could hardly keep my eyes open…

22.45: Comfortably in bed, I watched the news on television and caught up with the latest chapter in the Brexit escapade. I am pretty confident that I could do a better job than the majority of politicians braying in the House of Commons. The success I have made out of the #SaveWILG campaign proves this, although as always I get by with a little help from my friends…

00.00: I am watching Porridge on Yesterday yet again, as I am too scared to go to sleep as I know I will probably wake up again in an uncomfortable position. This has happened far too frequently over the last 6 months and I have had to call my dad to straighten my legs, re position me in bed and rescue the duvet which often falls to the floor as I wriggle and fight to get comfortable. Hopefully, if Fletcher and company can keep me awake a little longer, I will be out for the count until the crack of dawn.

02.50: I’ve been asleep since about 00.30 but being awaken by massive cramp in my knees as my legs have bent during sleep. It is most painful and I just want to fully straighten my legs, but I can’t. After much effort, I managed to free my legs from my groin area and get them into a 45 degree angle which is as much as I can muster. In doing so I have managed to slide down the bed and my pillow has fallen on the floor. I shut my eyes determined to sleep some more as I can’t call my dad again…

04.36: I wake up again. My legs are in agony. I check the time on my mobile and hope it is 06.00 or 07.00 so that I don’t have to wait too long for my staff to come in at 09.00. I look at mobile and am shocked to see that it is only 04.40. There is nothing I can do, but call my dad. This is far from ideal as he has arthritis in both hands and is in agony whenever he is having to assist me but those at WCBC do not care about my dignity or the dignity of my carers. It is freezing outside and my dad finds his way to my house – a five minute drive away – in perilous conditions. It takes him about 20 minutes to reach my house where he proceeds to straighten my legs, re position me in the bed and give me some paracetamol, which I swallow with water. I hope this medication will send me to sleep and I hope I wont be woken until my PA arrives in the morning.

07.00: Not again. I’m awake this time because my bladder is full. I reach for the light switch but my dad has moved it and forgotten to replace it – something that can be forgiven at 5 in the morning. It is still pitch black, but I really need to use my urinal. The trouble is I can’t see at all. I manage to sit up and grab hold of the urinal, but it is a real struggle to get it in the right position. I am too far gone to be able to calm myself down and resist the inevitable… another two hours until assistance arrives means lying helpless in damp and demoralising conditions. On the plus side, the Welsh Government are soon to be washing their hands of their responsibilities and local authorities across Wales can screw disabled people for all they can by providing them with inadequate care and support whilst squirrelling away funds meant for the most vulnerable in society.

I am OK now after my PA came to the rescue, but one thing is for sure – this sort of situation can’t go on for much longer. WCBC MUST face up to the evidence that I have gathered from my GP, Neurologist, Urologist, District Nurses, Physiotherapist and Occupational Therapist that I need constant support in my own home for my physical and mental well-being. This shouldn’t be such a battle and that is why we need to retain and improve the Welsh Independent Living Grant as not all people who receive WILG can stand up for their rights in the way that I can.

I just want my home to become a comfortable place for me to exist. At the moment, I think I would be better off being banged up in HMP Slade and sharing a cell with Fletcher and Godber…

porridge-porridge-28475322-456-301

 

 

Minutes of the Cross Party Group on Disability #SaveWILG

Minutes of the Cross Party Group on Disability

Friday, 11th January 2019, Wrexham Glyndŵr University,

Mold Road, Wrexham, LL11 2AW

Present: Carol Gardener, Jo Woodward, Tom Hall, Mark Davies, Eric Owen, Sorrel Taylor, Maureen Lee, Sharon O’Connor, Chris Roberts, Jayne Goodrick, Paul Johnson, Lynne Jones, Lynne Davies, Nathan Davies, Sandra Morgan, Bill Fawcett, Vince West, Laura Seddon, Lisa Pollard, Simon Green, Michelle Brown AM, Eluned Plack, Eluned’s carer, Jacqui Hurst, Kathryn Shaw, Brian Harrison, Rhian Davies, Martyn Jones, Zoe Richards, Mark Isherwood AM, Gareth Davies, Rebecca Phillips.

Apologies: Llyr Grufydd AM, Jan Thomas, Helen Mary Jones AM, Rob Williams, Kathryn Jellings, Andrea Wayman, Stephen Ben Morris, Louise (WCD), Owen Williams, Glenn Page.

1. Welcome and introductions

Mark Isherwood AM welcomed everyone to the meeting.

2. Minutes of the last meeting.

The minutes were approved as an accurate record.

3. Presentations:

Rhian Davies – Draft Framework for Action on Disability

Rhian provided an overview of the Welsh Government’s Draft Framework for Action on Disability. The document was created following a review of the Framework for Action on Independent Living, produced in 2013 to provide a strategic approach to independent living across Wales and to promote the social model of disability.

Disability Wales strongly believe that the Framework for Action on Disability should be under-pinned by the UN Convention on the Rights of Disabled People. Disability Wales worked with its partners in Scotland and Northern Ireland to produce a Manifesto for independent living and identified six calls to action:

1. Improved access to information, advice, independent advocacy and peer support services.

2. Availability of accessible and supported housing to meet individual requirements.

3. A comprehensive range of options and genuine choice and control in how social care and support is delivered.

4. Improved access to person-centered technology.

5. Barrier-free transport system that includes all forms of transport.

6. Enabling access, involvement and social economic and cultural inclusion of all disabled people.

There was a ministerial agreement to review the Framework for Action on Independent Living, three years on. This resulted in the Independent Living Steering group, comprising representatives from disability organisations across Wales, chaired by Rhian, to re-convene. The group reflected on what had been achieved since 2013. They recognised that whilst the introduction of the Framework was ground-breaking, progress on the ground was very slow and that national policy set by Welsh Government had not translated into local action. There was limited evidence in the change in culture, particularly by local authorities and local health boards in terms of taking on board a more rights-based approach to disabled people and to tackling barriers to independent living.

This was endorsed in 2017 during a Welsh Government consultation. The general feedback was that very little had changed in the lives of many disabled people and has even got worse which was also a key finding from the UN Convention on the Rights of Disabled People. The UN Committee in Geneva was very critical of the UK Government in that they had regressed in their local policies.

The steering group’s aspirations for the revised version is that it should be much stronger in terms of the UN Convention of the Rights of Disabled People. The Convention should be at the heart of the new Framework with a stronger commitment to implementation of the social model of disability and more robust action in terms of how that is understood by people.

Rhian reported that the steering group took a strategic decision to align it with Welsh Government’s own strategic plan, ‘Prosperity for All’ which has four key themes:

1. Prosperous and secure

2. Healthy and active

3. Ambitious and learning

4. United and connected

The steering group was of the opinion that there should be two documents. The main document, to set out the key commitments and principles for Welsh Government to abide by, plus a separate action plan that could be regularly updated and monitored with more specific detail about what different the Welsh Government departments would do in terms of delivery.

The action plan, which is currently out for consultation, links more closely to the articles of the UN Convention. In order to produce a response to the consultation, Disability Wales ran two events along with an online survey to gather the views of disabled people. The deadline for responses is Friday 18th January but there could be an extension. Rhian added that Alison Tarrant from Cardiff University has produced an interesting paper looking at independent living policy. The paper was circulated to members prior to the meeting. The paper critiques the Framework for Action on Disability and a number of issues were identified.

Disability Wales and other members of the steering group have been calling for incorporation into the UN Convention for the Rights of Disabled People (UCRDP), giving it similar status to that of the UN Convention on the Rights of the Child. Helen Mary-Jones AM is looking at how human rights can be incorporated in Wales.

Rhian noted that there is a disconnect between Welsh Government’s principles and aspirations in relation to improving independent living for disabled people and the actual reality of accessing services and achieving their rights.

Rhian highlighted the importance of the CPGD submitting a robust response to the consultation with the aim of strengthening the new Framework to ensure it takes forward the rights of disabled people in Wales.

MI highlighted some of the findings from the study based on the Draft Framework for Action on Disability produced by Alison Tarrant of Cardiff University. These included the absence of ‘Advocacy’, which was previously identified in the 2013 Framework as one of the highest priorities. In addition, the 2013 Framework was constructed around a series of priorities identified by disabled people. The foregrounding of the priorities and expertise of disabled people has been removed. MI suggested these be considered when submitting a response.

Nathan Davies – Wales Independent Living Grant

Nathan shared a video with the group, titled ‘Save WILG Campaign’. The video highlighted the issues faced by more than 1300 recipients of the grant. On March 31st, Welsh Government plan to close the Welsh Independent Living Grant (WILG) and transfer the funds to the Local Authorities. The funds will not be ring-fenced. The video, features an insight into Nathan’s condition, Friedreich Ataxia, a progressive disease of the nervous system. Nathan states that in order to be a productive member of society, he requires the help and support from personal assistants, funded by WILG. Without the grant, his care will be reduced from 86.5 hours per week to 31 hours per week. Back in April 2018, at the Welsh Labour Conference, a motion was passed to save WILG. However, this has not been acted upon yet. The Campaign has gathered political support from across the spectrum and still Welsh Ministers and some civil servants refuse to listen to the evidence collected. Nathan is particularly concerned that the money being given to Local Authorities has not been ring-fenced.

Nathan’s strength and campaigning has been recognised by the Wrexham Glyndwr University who have made him an honorary fellow.

To highlight the issues surrounding WILG, Nathan is running a series of campaigns across social media to influence a positive decision.

Mark Isherwood AM invited questions and comments.

Questions / Comments:

In relation to WILG, Rhian informed the group that Nathan and the BBC made a Freedom of Information request. It emerged that only two-thirds of people have been assessed and although some had their packages maintained and some increased, a significant number had their hours cut. There were circa 17 instances of clients taking legal action against their local authority. In response to the Freedom of Information outcome, Huw Irranca-Davies AM agreed to examine this further to establish whether the issues solely related to Wrexham or whether the problem was more widespread. Rhian suggested the CPGD write to the new Minister, Julie Morgan AM for an update.

The importance of disabled people needed better access to lawyers was raised.

Mark Isherwood AM stated that the Equality and Human Rights Commission will occasionally fight a trial case to establish a precedent. The CPGD could submit a request if there was a particular matter that needed to be tested in court. He added that Welsh Government do not have control over Legal Aid but it is still worth highlighting any concerns and to ask what support they can offer to better access legal advice.

Various sources of legal services were identified and will be circulated following the meeting. Disability Wales also have a guide on their website offering advice and information called ‘Know Your Rights, Use Your Rights, Live Your Rights’.

Concerns were raised around the lack of proper planning and services available for the increasing number of children with disabilities which will result in their needs not being met.

A member asked why Welsh Government has decided not to follow Scotland or Northern Ireland in terms of how they manage the Welsh Independent Living Grant if there is evidence to prove the system is working well in those areas.

Mark Isherwood AM suggested Disability Wales seek data from Disability Scotland to identifying the positive impact the grant has had on recipients of the grant.

The Chair welcomed further comments from the floor. Learning Disability Wales gave an update their work. In December Learning Disability Wales held its first ministerial advisory group meeting, chaired by Gwenda Thomas AM. The main focus was the Children’s Commissioner’s ‘Dont Hold Back’ report, investigating children and young people’s experience of transition across various policy areas. Martyn also informed members that Welsh Local Government Association (WLGA) has been consulting on a document around commissioning services and are looking to hold a national conference around it. Public Health Wales are working with LDW on a conference on reducing restrictive practice with the Education Minister. The Equality and Human Rights Committee are about to start a piece of work around access to courts to support disabled people to fully engage in the system.

Rhian added that Disability Wales are working with Women’s Aid to establish the accessibility of refuges. A survey has been produced and will be circulated. The results will be compiled soon and asked whether it would be an opportunity hold a joint meeting with the Party Group on Violence against Women and Children to share the findings.

Mark Isherwood AM welcomed a joint meeting with the Cross Party Group on Domestic Violence.

Date of the next meeting:

Zoe Richards will circulate the date of the next meeting, to be held in Cardiff.

Actions:

1. CPGD to produce a response to the Framework for Action on Disability consultation document and seek an extension to the deadline of the 31st January.

2. Zoe to share the link to Nathan Davies’ campaign video to members.

3. CPGD to write to Julie Morgan to summarise concerns and seek an update in relation to the issues identified following the Freedom of Information request.

4. Disability Wales to seek data from Disability Scotland to support the evidence around the positive impact of WILG on Scottish recipients.

5. Circulate an email requesting responses to the consultation.

6. Circulate Women’s Aid and Disability Wales’ survey

Open Letter to First Minister Mark Drakeford #SaveWILG

Dear Mark

This is an incredibly worrying time for all disabled people and their families across Wales.  There are only 63 days left before the Welsh Independent Living Grant is due to end, leaving individuals at the mercy of cash-strapped Local Authorities  who seem intent on cutting vital support packages across the board with no guarantee that further cuts will not follow.

The fact that this neo-liberal policy is still being forced through by a Welsh Labour Government is unbelievable: frankly, it makes it even worse. I always thought that I would be protected from the brutality shown by the Tories in Westminster, because I live in a land governed by a social, democratic party. Unfortunately, the Party that I know and love seem to have lost their way under the previous leadership, which is why I was overjoyed by your election victory to become our new First Minister.

I am confident that Welsh Labour is now travelling in the right direction towards a socialist future which you championed during the Leadership Hustings. In an interview with the BBC you also said the following about the future of the Welsh Independent Living Grant:

…”if an independent evaluation “shows the new system is not working as well as the old one then I would be prepared to reverse it because this is money intended for a very specific number of people for a very specific purpose”.

The deep-dive that was recently undertaken by the Welsh Government, to analyse the performance of Local Authorities relating to the WILG transition, is full of errors and quite frankly not worth the paper it is written on. How can an investigation into the circumstances surrounding the end of WILG be conclusive without having consulted disabled people who will be affected? My comrades dismantled the deep-dive results in our recent meeting with Deputy Health Minister, Julie Morgan AM.

The closure of the Welsh Independent Living Grant is such a destructive move to disabled people’s rights and I do not believe that a progressive Party such as ours should be going down such an avenue.

#SaveWILG campaigners have presented the Deputy Health Minister with an 80 page dossier of evidence against the closure of WILG. In addition, we have the backing of Welsh Labour members who overwhelmingly voted in favour of the Clwyd South motion to save WILG at Conference in April 2018. I believe you pledged to listen to the voices of members during the Hustings and they have certainly been vocal on this subject. We have also had support from Jeremy Corbyn, Shadow Chancellor John McDonnell, MP’s such as Chris Williamson, Ian Lucas and Chris Ruane. Film Director Ken Loach also supports our campaign.

Criticism of Welsh Government policy on Independent Living has also been made by the United Nations Convention on the Rights of People with Disabilities (UNCRPD):

However, various disability organisations in Wales had advocated setting up a national independent living scheme in Wales as aligning with a citizen directed system of support rather than the approach now adopted by the Welsh Government.

We recommend that the CRPD Committee asks:

Can the Welsh Government explain:

How it reached a decision to move all ILF recipients to normal social care provision from 31 March 2019, rather than setting up a national independent living scheme?

How it will ensure protection for article 19 rights of those formerly eligible for the Independent Living Fund after 31 March 2019?

I do not believe Welsh Labour should be having to defend themselves against the UN as I know your personal intentions are to ensure universal equality throughout Wales, but now is the time to take positive action and start listening to Welsh Labour members and disabled people and their families.

Personally, I have been treated abysmally by my Local Authority. I find myself in the position of having to teach my social worker about the Social Services and Well being Act. I am not being allowed to use my Direct Payments to meet my Personal Outcomes as described in the SSWBA and feel this vindicates my insistence on the need to maintain the tripartite system when deciding on and funding future care provision.

The reassessment process – which was originally due to end by September 30th 2018 and shows no sign of being completed soon – is really having a negative impact on my physical and mental health. When I first met with my social worker at the end of November 2018, she laughed when I suggested that I would need 24/7 support. She declared that no one in Wrexham gets such a thorough level of support [whether they require it or not?]. She said that even if we applied for such levels of care and support, that the panel would not accept such a request. This is a total departure from what the SSWBA promises. There is definitely no co-production going on and Local Authorities seem to be treating disabled people as a burden.

Without the overnight support I need to fully function in society, I have to stop drinking at 8pm at night, get ready for bed at 10pm and cannot wear my hand splints or use my leg supports during long and uncomfortable nights. I often find myself having to call on my 68-year-old father to assist me in the night, even though he lives a 10 minute drive away and has arthritis in both hands.

As Tanni Grey-Thompson said on Wales Live (23/01/19), it will cost the Welsh Government more in the long term to push ahead with this strategy of devolving funding to Local Authorities. It just makes no sense whatever way you look at it. Disabled people and their families never wanted such a situation to develop as was indicated in the original consultation that took place during 2015/16. I have been asking to see the consultation documents since October 2017, but I keep being directed towards a summary document. We all know that a summary can be manipulated and edited to suit the publishers. If the summary is accurate why can I not access original consultation responses?

It is often claimed by the Welsh Government that the original stakeholder group were united in agreement with the closure of WILG and the transferring of funds to local authorities.This is quite simply untrue. The members of the stakeholder group that I have spoken to have stated their frustrations with the whole process: “I disagreed with one side of the room almost continuously,“ and “I would be amazed to see minutes of a meeting where all participants agreed that passing this WILG over to the local authority beyond the ring-fenced period was the way forward.”  Others have said “I used to go home from all these stakeholder groups thinking we had agreed certain things to discover that was not what had been recorded.” and other activists argue that many officials and civil servants do not actually “know what Independent Living means – they still think ‘independent’ means managing without support”.

It would greatly assist me in understanding Welsh Government’s decision making process on this issue if the minutes of all of the meetings of the stakeholder advisory group can be provided, and I will submit a Freedom of Information Act request if necessary.

I could go on and on, but time is against me and I would merely be repeating much of what can be read in my attached dossier of evidence. At over 80 pages long, I believe it is a comprehensive guide as to why the Welsh Independent Living Grant should be maintained indefinitely. The dossier includes information of the success of the Independent Living Schemes set up in Scotland and Northern Ireland that shows the lack of imagination shown by the Welsh Government compared to our neighbours.

Please note that this letter is written with the deepest respect towards yourself and your cabinet members. I am a loyal Welsh Labour supporter and I have belief in the 21st Century socialism that you intend on developing. The problem is that we cannot wait any longer and the changes need to be made immediately. There is no sense in a proud socialist Government copying the exact same model rolled out by the Conservative Party in Westminster.  Moreover, if the original decision was wrong then your team needs to have the courage to simply reverse it.  Tinkering with the detail in a bid to spare the blushes of your predecessors is just not acceptable: in fact it’s morally dishonest.

I know that you are extremely busy with Brexit and other pressing concerns, but disabled people with high care and support needs across Wales are in need of your leadership now. I look forward to meeting you again in the near future and should you require any more information from the #SaveWILG campaign, please do not hesitate to contact me.

Wishing you strength and solidarity

In hope…

Nathan Lee Davies
#SaveWILG campaign

WALESPOSTCARDFRONT001

EHRC Report into Disability Rights in Wales #SaveWILG

This report by the European Human Rights Commission into Disability Rights in Wales really is essential reading. The section on independent living is especially relevant to the #SaveWILG campaign.

It reads as follows:

Independent living funding

The UK Government’s Independent Living Fund (ILF) closed across the UK in June 2015. In order to continue support for individuals, a new grant scheme (the Welsh Independent Living Grant) was set up by the Welsh Government to run until March 2017. As a result of the funding support transferred from the UK Government, funding in Wales for this interim arrangement was restricted to supporting existing ILF recipients.

In November 2016, the Welsh Government announced that by 31 March 2019 all former ILF recipients will have their care and support needs met through normal social care provision, having received an outcome and care and support assessment under the Social Services and Well-being (Wales) Act 2014. This arrangement will aim to ensure that all disabled people with higher care and support needs are supported equally.

The decision to take forward this approach followed taking representation and advice from a stakeholder advisory group. However, various disability organisations in Wales had advocated setting up a national independent living scheme in Wales as aligning with a citizen directed system of support rather than the approach now adopted by the Welsh Government.

We recommend that the CRPD Committee asks:

Can the Welsh Government explain:


 How it reached a decision to move all ILF recipients to normal social care

provision from 31 March 2019, rather than setting up a national independent living
scheme?

 How it will ensure protection for article 19 rights of those formerly eligible for the 
Independent Living Fund after 31 March 2019?

The full damning report can be read by clicking the link below:

https://www.equalityhumanrights.com/sites/default/files/wales_supplementary_submission_to_crpd_uk_loi_-_ehrc.pdf