Social Services and Well-being (Wales) Act

Emergency on Planet Earth #37

I WILL WRITE A NUMBER OF EMERGENCY ON PLANET EARTH BLOGS THROUGHOUT THE TORY SPONSORED CORONAVIRUS CRISIS.

 What follows is a random collection of thoughts from a human being trapped in 21st Century British society.

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I am absolutely over the moon that I have just employed another personal assistant, to join my small team of staff. After losing three valued employees in March, I have endured a very stressful period where I have had to stretch the limited resources that I have, to ensure I receive the 24/7 support I need.

It is such a relief to have found someone that I can respect, and receive the same respect back. I had been messaging agencies, as it seemed that I would never find the right individual to work with. Of course, only time will tell if I have struck gold, but the early signs are very encouraging.

There are still hours available, but not nearly as many as there were. I also have another member of staff due to return from maternity leave soon, so all of a sudden everything is looking rosy as I try to establish the 2:1 support that I really need to meet my physical and mental wellbeing needs.

A good example of why I need 2:! support came the other day, when my electric wheelchair started playing up. I called the engineers, who said that they would make an emergency call, as long as I was able to get out of the chair while they made adaptations. This is a standard request, made with my safety in mind. Unfortunately, I was unable to vacate my chair as I only had one support worker present. Hoisting me out of the chair and on to a bed or shower chair, is a two-person job in order to comply with health and safety regulations. I was subsequently forced to arrange an appointment for tomorrow afternoon, while hoping my chair does not give up the ghost in the meantime.

I will achieve my ultimate goal of independent living, supported by the Social Services and Wellbeing Act, in the end. It just might take me a little longer than expected, after starting my crusade ten years ago…

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Below, I have share a video that I found on YouTube, that quickly encapsulates Friedreich’s Ataxia. This is the progressive, genetic disease of the nervous system that I live with, so I thought you might be interested. It is only a short video, so I have also added a more complex video that explains all in a scientific manner. If you are interested then you may wish to watch this, but it even confused ME, so I don’t blame you if you don’t bother.

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This was an interesting post that I read this morning, from the Debatedly Dateable blog about dating in the Covid era. I should be so lucky…

Open Letter Regarding 2:1 Support

I was sad to learn about the death of Wrexham Archives Assistant, Julian Crute, he helped me a great deal with my research into Wrexham AFC football matches and was always polite and enthusiastic. May he rest in peace.

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I have spent the last 10 years fighting for my right to Independent Living. With the help of my comrades, l led the campaign to Save the Welsh Independent Living Grant (#SaveWILG) – something that we are still trying to bring to a satisfactory conclusion.

While l have been carving out a reputation as a disability activist, it has been unfortunate that my neurological condition has progressed. It is no longer possible for me to communicate with the outside world without support. I am sure you can imagine that is very frustrating for someone with such a creative and active mind. I have several writing projects that l wish to pursue, l need to express myself artistically and it is my intention to continue with my activism.

The problem is that the PAs that I employ have other duties to fulfil during a shift – washing, toileting, showering, dressing, eating, drinking, cleaning, cooking and the like. I am often unable to get the thoughts that are locked inside my head on to paper whether it be a blog, poem or a piece of art. This obviously effects my mental health and I feel that I am constantly searching for an escape route from the prison of frustration that I have been sentenced to.

Thankfully, l live in Wales and we have the Social Services and Wellbeing Act to protect me – at least on paper. I think it is about time that disabled people stood up for what they are legally entitled to.

The 24/7 support that l have fought so hard for is a starting point not an end point. Having one person with me 24/7 provides safety and basic support but the Act is designed to ensure that EVERYONE has a “legally enforceable right” to a decent quality of life .I fully intend to live what is left of my life to the full, although l cannot do this  without adequate support.

Hopefully, l will be able to achieve my goal of 2:1 support without too much hassle. My previous experiences with local authorities do not fill me with confidence, but the route to achieving the support an individual needs to live life to the full, needs to be opened up so that each member of society is able to compete and contribute on a level playing field.

Nathan Lee Davies

Changes to Non-residential Social Care Charging

I have just received a second email of the day from Disability Wales, about charges for non-residential social care. While it is worrying that the maximum personal weekly contribution has been raised from £90 to £100, I am hoping that the majority of local authorities can clearly see that the majority of disabled people in Wales, could not afford such an eye-watering figure.

I urge anyone negatively impacted by this increase, to get in touch with Disability Wales.

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Dear Members

As of 6 April 2020 changes came into effect which updated some of the arrangements by which local authorities are able to charge for the social care and support they provide or arrange. These changes were introduced by amendments to the regulations and code of practice governing charging under the Social Services and Well-being (Wales) Act 2014.

The changes included an increase in the Maximum Weekly Charge applicable in non-residential charging from £90 to £100 per week. The capital limit applicable in non-residential care charging remains at £24,000 and the savings disregards remain unchanged.

While the increase to a maximum charge of £100 was long planned, it has been implemented at a very challenging time for anyone receiving social care. We are hearing reports from members that some are not getting their full package of support for a range of reasons related to the Coronavirus emergency.

We have raised our concerns about the increase in charges with Welsh Government, however it would strengthen our discussions with Ministers and officials, if we can provide more information about how it is affecting people around Wales. We’d be grateful if you can let us know the following:

  • Have your social care charges increased since 6th April and if so by how much?
  • Are you getting the full package of services as agreed in your assessment?

Any information you provide will be treated in confidence and anonymised in any communications with Welsh Government.

We look forward to hearing from you.

Many thanks

Rhian

Rhian Davies

Chief Executive/Prif Weithredydd

Coronavirus Bill Statement

The following statement was taken from the Disability Wales website, which can be viewed here.

Corona Virus Bill: Suspension of Social Services and Well-being Wales Act (2014)

National Disability Umbrella Organisations in Wales have serious concerns about the implications of the Coronavirus Bill on human rights, especially the rights of specific groups, including disabled people.

The second reading of the Bill was on Monday 23 March in the UK Parliament. A Legislative Competence Motion on the Coronavirus Bill will be debated in the National Assembly for Wales today on Tuesday 24th March.

We welcome the UK Government’s amendment to ensure the Corona Virus Bill to ensure that it is to be renewed every six months, given the sweeping nature of the powers. Nevertheless, we remain concerned that the Bill suspends the key provisions in the Social Services and Well-being (Wales) Act 2014 unless services are needed to protect an adult from abuse or neglect or a risk of abuse or neglect. Unlike the suspension of the Care Act (2014) duties in England, there is no express requirement to avoid breaches of the European Convention on Human Rights included.

We call on the Assembly to take action to protect the lives of many thousands of disabled people by ensuring that no services are withdrawn without undertaking an assessment to verify whether there would be a breach of human rights.

We believe that the Corona Virus Bill presents a real and present danger to the lives of disabled people. It will effectively roll back 30 years of progress for disabled people.  It also comes after years of chronic under funding of social care which has resulted in a social care system already at breaking point. The bill will:

– Remove disabled people’s rights to social care
– Change the duties to educate to meet children’s educational requirements to a ‘reasonable endeavours’ duty
– Severely undermine the civil liberties of disabled people and erode their rights to support.

We understand this is an unprecedented and extremely challenging situation, however given the already broken social care system, this Bill will almost inevitably leave many thousands of disabled people without essential support or any rights to request this support. Rolling back our rights is not good for anyone and in the current circumstances will put many lives at risk.

Rather than removing disabled people’s right to social care support the government must treat our essential social care service as key infrastructure, alongside the NHS, and as such it must immediately provide the necessary funding to keep this vital service running.

Our understanding of the negative social implications of the #CoronaVirusBill on the lives of disabled people and their families detailed below.  This information was prepared by barristers who specialise in public law and disability rights.

Implications of the Bill for Disabled people

What does it mean for disabled adults? 

Schedule 11 of the Bill [pages 111 – 122] effectively suspends / downgrades almost all adult social care duties (including charging duties).  As the Explanatory Notes (at para 175) explain, the various duties to assess and meet eligible needs of adults and carers in the Care Act 2014 and adults, young people and carers in the Social Services and Well-being (Wales) Act 2014 (SSWWA) are downgraded to powers.

A duty to meet needs will only arise in England if a failure to provide care and / or support would be a ‘breach of an individual’s human rights’.  In Wales a duty only arises where a failure to do so would mean that the individual may be experiencing or at risk of abuse or neglect

Education

Schedule 16 of the Bill [page 158 – 181] provides the Secretary of State / the Welsh Ministers with powers to issue directions suspending school provision and attendance duties and downgrades local authority education law duties (including those relating to the provision of  Additional Learning Needs) to obligations ‘to use reasonable endeavours to discharge’ the duty.

Mental Health Detention

Schedule 7 Part 2 para 3 of the Bill [page 90] provides that an application by an approved mental health professional under the Mental Health Act 1983 sections 2 or 3 need only be founded on the recommendation by a single registered medical practitioner.

Sources of information

Suspension of Care Act

www.lukeclements.co.uk/the-coronavirus-bill-social-care-sen/

Coronavirus COVID-19  Disabled People’s Frequently Asked Questions

I thought it would be useful for my Wales-based disabled readers, to read the following FAQs concerning the Coronavirus outbreak. We need all the help and support we can get, so it is important to be armed with information such as this, which was kindly put together by Disability Wales. 

Stay safe everyone.

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Do we have any answers from Welsh government on protections for disabled people who access social care?   

Visits from care or healthcare workers, who would normally come and help with your daily needs or social care, will be able to carry on as normal. But carers and care workers must stay away if they have any of the symptoms of coronavirus – a high temperature (above 37.8 °C) and/or new and continuous cough. 

You may find this guidance on home care provision useful: COVID-19: guidance on home care provision on GOV.UK 

Will the Coronavirus Bill have any impact on social care in Wales? 

Disability Wales has serious concerns about the implications of the Coronavirus Bill on human rights, especially the rights of specific groups, including disabled people. 

We welcome the UK Government’s amendment to ensure the Corona Virus Bill is to be renewed every six months, given the sweeping nature of the powers. Nevertheless, we remain concerned that the Bill gives Ministers the powers to suspend the key provisions in the Social Services and Well-being (Wales) Act 2014 unless services are needed to protect an adult from abuse or neglect or a risk of abuse or neglect. Unlike the suspension of the Care Act (2014) duties in England, there is no express requirement to avoid breaches of the European Convention on Human Rights included. 

We call on the Assembly to take action to protect the lives of many thousands of disabled people by ensuring that no services are withdrawn without undertaking an assessment to verify whether there would be a breach of human rights.  See link to joint statement issued http://www.disabilitywales.org/coronavirus-bill-statement/   

Will carers/disabled people be provided with Personal Protective Equipment (PPE) i.e. gloves, aprons, masks? 

Welsh Government are taking steps to enhance the arrangements in Wales for protecting our front-line health and social care staff who are caring for suspected or confirmed COVID-19 patients. 

As social care has an essential role along with health care in response to COVID-19, PPE will also be released for use by social care providers.   

You can contact your local Direct Payment Support provider who will be able to signpost you to where you can get hold of PPE.  

How are ‘vulnerable’ people in Wales being identified or can they register themselves? 

Identification of those classed as high risk will be done through GP/hospital medical records. 

If you have been identified as being at high risk, you will receive a letter from the Welsh Government setting out the advice and sources of help and support in your local community. If you are employed, this is also proof that you will not be able to go to work while you are shielding and can be shared with your employer. If you are able to, you can work from home, if your job allows it. You will not need to get a fit note from your GP. 

If you need help from the welfare system visit Universal Credit on GOV.UK website. 

If you believe you fall into one of the categories of extremely vulnerable people listed above and you have not received a letter, you should discuss your concerns with your GP or hospital clinician.  

Will testing be made available to carers / Personal Assistants and those being supported (disabled people)? 

Welsh Government are aiming to roll out testing beyond the NHS to social care.  They are increasing the capacity to do this.  It won’t happen immediately but it will be introduced in the coming weeks, with significant extra testing being introduced for other key workers including social care providers. 

Those providing social care will be tested if they present Corona like symptoms and they can then be returned to the workplace if the test provides the right result. 

We are yet to hear whether testing will be introduced for those being supported. 

I am unable to get a food delivery slot online at any supermarket what can I do? 

There are many local shops (butchers, greengrocers etc) offering a food delivery service or pick up.  You could try contacting local shops in your area to see is this is available.  

If you are online and use social media you can post to local community pages on Facebook for example, to find out what food delivery services are being provided in your area.   

Another option is to contact your local Community Voluntary Service (CVC) they may know of volunteers or services who could help you.  Here is a link to CVCs across Wales: https://www.gvs.wales/about-us/wcva-county-voluntary-councils-cvcs-and-volunteer-centres-vcs 

Or contact our office on 029 20887325 email: info@disabilitywales.org and we will do our best to look into the options for you, if you are unable to. 

My Carers / Personal Assistants have all called in sick due to Corona like symptoms, what shall I do? 

If you receive support through an agency then contact them straight away to inform them of the situation.  They will be able to advise you. 

If you do not receive support through an agency then contact your local social services to seek advice immediately.   

You can find a link to your local council’s website here: https://www.wlga.wales/welsh-local-authority-links 

I need to order and collect my repeat prescription/s.  What do I do as I’m classed as ‘vulnerable’ and I need to self-isolate? 

Many GP surgeries are restricting access to the surgery itself at this time.  You may have to order your repeat prescriptions over the telephone.  Please telephone your surgery to check what their procedure is during this Coronavirus pandemic.   

Ask family, friends or neighbours for assistance during this time, if this is possible.  In many cases prescriptions are being sent to the nearest pharmacy to people and then deliveries are being made to people’s homes where necessary.  Explain that you are self-isolating and will need someone to deliver your medication to you. 

Make sure you order your repeats in plenty of time.  It may take a little longer than usual to obtain your medications due to the high demand.  However, there is no need to stock on your medication as this can lead to medication shortages.   

Contact your GP and pharmacy to check procedures during 26is time as processes may vary across Wales.     

Useful sources for information: 

Public Health Wales: guidance on social distancing for everyone in Wales including disabled people: https://phw.nhs.wales/topics/latest-information-on-novel-coronavirus-covid-19/guidance-on-social-distancing-for-everyone-in-the-uk-and-protecting-older-people-and-vulnerable-adults/#  

Social Care Wales: https://socialcare.wales/news-stories/the-latest-information-on-coronavirus-covid-19 

Dewis Wales: Find local and national organisations that can help you https://www.dewis.wales/ 

All information has been taken from official sources and understood to be correct at time of publishing. 

The Human Right To Dignity

The following article dates from Friday, 15 April 2011 and is taken from The Broken Of Britain blog. This was a blog written by the late Dr Rhydian Fon James and his words are as relevant today as they were nine years ago.

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To read a biography about Rhydian, please click the following link. I would recommend reading all about this prolific inspirational who achieved so much before tragically passing in January 2016 at the age of just 31. Like me, Rhydian lived with Friedreich’s Ataxia. 

It is encouraging that the social care landscape has changed for the better in Wales since this article was published, as disabled people are now protected by the Social Services and Wellbeing (Wales) Act of 2014. In addition, the Welsh Government have made a commitment to the Codes of Practice to Article 19 of the UN Convention on the Rights of Disabled People.

I have now received my ‘independent reassessment’ from ICS and WCBC and am working behind the scenes to sort out an appropriate care package. I do not want to say too much at this stage as I need to concentrate and stay focused on the negotiations ahead.

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The Human Right To Dignity

This week was meant to be a quiet one, with Parliament in recess; no pressing issues on the news agenda; no MPs to brief. Meant to be. It hasn’t quite worked out this way, and we’ve all been busy preparing the continued campaign. This has meant that I haven’t had a chance to write about an interesting court case that’s been on my mind for the last couple of weeks.

Last week the Supreme Court heard an appeal case with huge implications for disabled people who receive packages of support. The court heard the appeal of Elaine McDonald, whose care package was cut by Kensington and Chelsea council even though it had assessed her as needing that support. McDonald became disabled following a stroke in 1999 and later broke a hip in a night-time fall. She had been provided with a weekly package of 22.5 hours of daytime support and another 10 hours of care seven nights a week.

A needs assessment by the council found night-time care was essential to provide supervision to prevent her falling while using the commode at night, due to a bladder condition. But in 2008 the council said it planned to cut her care package, and said she could be given incontinence pads instead of an overnight care worker, even though she is not incontinent. In November, the Court of Appeal ruled that the council had not breached care laws, McDonald’s human rights or the Disability Discrimination Act (DDA) by cutting her support.

The Supreme Court confirmed three weeks ago that it had granted her leave to appeal. McDonald’s case is being funded by the Equality and Human Rights Commission, which said in November that it feared other councils would use the judgment to “reduce community care and services for disabled people”. The Supreme Court’s decision will not be handed down for a few weeks yet, but it will be massively important for anyone who gets a care package from their local council.

This is because the Court of Appeal had found that a council could simply review a service-user’s care needs and then reduce their support, without needing to conduct a new assessment. The precedent set by this case would affect all service users. At the moment, if the council want to cut a person’s care package, they must show that their needs have changed and that they are thus entitled to fewer hours.

As service users will know, councils have been anxious to cut costs in recent years. This has led to a great deal of pressure to cut care packages, and the near-impossibility of new care packages being offered, but the need to re-assess has slowed the austerity zeal. This is because, regardless of whether they wish to cut, councils must show that the service user’s needs have lessened prior to cutting, and a council cannot be considered to have conducted a lawful assessment simply by reviewing a disabled person’s care package.

If the Supreme Court were to uphold the Court of Appeal’s decision, it would give councils free reign over decisions to cut care packages. It would also mean that it would be more difficult to argue that the refusal to provide care was a breach of her human rights to dignity and to a private and family life.

You might think that forcing a disabled person to, effectively, wet themselves at night when they are not incontinent is humiliating and degrading. But when councils are hunting for possible cuts, it may not be illegal for councils to cut care packages and force just that outcome.

Written Statement by Julie Morgan AM #SaveWILG

I have just received this Written Statement by Julie Morgan AM, Deputy Minister for Health and Social Services. It is an update on the current situation regarding the Independent Care Assessments that the #SaveWILG Campaign insisted upon.

This is another positive step forward and it is encouraging that the end is now in sight…

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

DATE: 18 July 2019

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

In February I announced a change of approach in the way that people who used to receive payments under the Welsh Independent Living Grant (WILG) were in future to access their support from their local authority’s social services. This is an update on the arrangements I am introducing.

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. It was for this reason that I decided that those people who used to receive payments under the WILG should have the opportunity of an independent care and support assessment if they are unhappy with the outcome of their local authority care and support assessment. Those assessments are being undertaken to agree with people the wellbeing outcomes they wish to achieve to live independently and to agree how these would be met.

While the majority of people who used to receive WILG payments are content with the care and support they are now receiving, where people are unhappy with the outcome of care assessment the ability to have an independent care assessment would provide for a second opinion. It also restores for them the tripartite decision making arrangement that existed under the Independent Living Fund (ILF) of recipient, independent ILF social worker and local authority social worker. This was something that the “#Save the WILG campaign” was very keen to have restored.

I am pleased to report that we have made good progress in putting in place the arrangements for these independent care assessments. I wrote in April to all former WILG recipients informing them of their ability to have an independent care assessment and explained my reasons for providing this opportunity. If people wanted an independent assessment, I asked them to contact their local authority by 14 June to request this, so we could gauge the level of interest. By that date 55 requests had been made across 14 local authorities. This is out of approaching 1,400 people in Wales who received payments from the WILG. This would seem to confirm our understanding that the vast majority of former WILG recipients are content with the outcome of the care assessment they had and the subsequent care and support they are receiving. However, it does also confirm that I was right to introduce this change of approach

for what is a significant number of people who have concerns about the outcome of their care assessment.

We have in addition completed a procurement exercise to secure an organisation to recruit and manage the independent social workers required to undertake these assessments. These social workers will be suitability qualified and experienced to perform this task, being registered as such on the relevant register maintained by Social Care Wales. They would consequently be well versed in the ethos and requirements of our Social Services and Well-being (Wales) Act 2014 and the regulations and code of practice we have made under this in relation to care assessments and meeting care needs. They would not, however, be employed by a local authority in Wales so as to maintain their independence.

Following evaluation of the bids received for this contract, ICS Assessment Services Ltd. has now been appointed to organise and undertake the independent care and support assessments requested. ICS has significant experience in both social care and undertaking assessments, having worked previously with a range of local authorities across Wales and England. Officials have met with representatives of ICS, the Association of Directors of Social Services Cymru and the Welsh Local Government Association, to agree the process that will be followed to complete the independent assessments and to work through the practicalities associated with this. This is well advanced so that the arrangements to begin to undertake ICS assessments should be in place by the end of this month. I will be writing shortly to those former WILG recipients who have requested an independent care and support assessment be update them in more detail on this and to confirm what they need to do to pursue their assessment.

I would remind Members that the cost of these independent care assessments, and any additional support for people 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 consistent with supporting people’s agreed wellbeing outcomes.

I appreciate that establishing these arrangements has taken some time. However, it is imperative that we put in place properly considered arrangements. The “#Save the WILG Campaign” has been supportive of the approach I am taking, as we share a common interest in seeing changes implemented properly.

I will update Members as further progress is made.

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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.

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

Letter from David J Rowlands, AM #SaveWILG

Below I have copied a letter from David J Rowlands, AM, Chair of the Petitions Committee. That should be of interest to all WILG recipients and their families. 
 

 8 August 2018 

 

Dear colleague, 

 Petition P-05-771 Reconsider the closure of the Welsh Independent Living Grant and support disabled people to live independently  

The Petitions Committee is considering the following petition, which was received from Nathan Lee Davies having collected 631 signatures: 

 I am a recipient of the Welsh Independent Living Grant (WILG) and a disability activist who intends on asking Welsh Government to reconsider their decision to close WILG as of April 2019.  

The WILG was introduced to help people who previously claimed from the UK government’s Independent Living Fund (ILF), which closed in 2015. More  than 1,500 people are helped by the scheme across Wales. Recipients all  have high degree of care and support needs. 

It was due to run until the end of March 2017, but Social Services Minister Rebecca Evans said in November that funding would continue for another year. 

 The annual £27m fund will then transfer directly to local authorities during 2018-19 so they can meet the support needs of all former ILF recipients by 31 March 2019. 

 Additional information: 

Why we oppose this decision: 

 The Welsh Government said the decision was taken on stakeholder advice. The majority of representatives on the stakeholder group were third sector or citizens. But they didn’t want WILG scrapped and the key point is that our advice was not accepted. 

 It should also be remembered that closure of WILG is not inevitable as is proved through the formation and success of the Scottish Independent Living Fund; which also works to support the Northern Ireland ILF. 

 Furthermore, the hugely popular Labour Party Manifesto outlined plans to set up a national care system to exist independently of local authorities. 

 This is exactly the time that the Labour Party should be united on such issues against the Tories. We must question why Welsh Labour are not playing their part in the changing political landscape? 

 Indeed, eventually it should be our aim to set up an Independent Living Fund for Wales so that no disabled person should have to suffer the same uncertainty and isolation as WILG recipients are now experiencing. We can only begin to believe that true social justice and equality for all is possible if Welsh Labour revisit their WILG decision. 

 Welsh Labour will no doubt argue that we should give the Social Services and Well-being (Wales) Act a chance to succeed. However, this idealistic act needs hefty investment and resources to ensure it is a success – with no sign of any of the necessary improvements to our infrastructure that the success of the Act depends on. This may indeed be the time for a revolutionary change in the way social care is delivered, but such a transformation could take a decade or more and WILG recipients do not deserve to be treated like guinea pigs when their high care and support needs require long-term stability and structure. 

 Most recently, the Committee held evidence sessions with the petitioner and the Minister for Children, Older People and Social Care. Details of all the evidence received to date can be found here: http://www.senedd.assembly.wales/ieIssueDetails.aspx?IId=19785&Opt=3 

 The Committee has agreed to seek the views of others who may have a perspective on the petition and the decision to close the Welsh Independent Living Grant from March 2019. 

 We would therefore be extremely grateful to receive any views you have in relation to the following issues (or any other matters which you feel are relevant): 

  • The Welsh Government’s decision to transfer funding for the Welsh Independent Living Grant to local authorities. 
  • The potential benefits or problems which may arise from supporting WILG recipients through local authority social care provision in the future. 
  • The current transition process, including assessment by local authorities, and any feedback from WILG recipients. 
  • If you (or your organisation) was involved in the work of the ILF stakeholder advisory group, your experience of this process and the extent to which the group’s deliberations and final recommendation reflected the views of members. 
  • Any alternative approaches that you believe should have been taken by the Welsh Government, or any changes which should be made at this stage. 
  • Any other views or comments that you have in relation to the petition. 

I would be grateful if you could provide any response which you wish to make by e-mail to the clerking team at SeneddPetitions@assembly.walesif possible by Friday 14 September 2018. 

Please feel free to share this letter with others who you feel would have views to share on any of the above. 

Responses are typically published as part of our Committee papers and will be discussed at a future Committee meeting. 

 Yours sincerely 

 David J Rowlands AM Chair