England

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the Assembly to take action to protect the lives of many thousands of disabled people by ensuring that no services are withdrawn without undertaking an assessment to verify whether there would be a breach of human rights.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

Open Letter to Whom it May Concern

The following letter is written from the heart and broaches the difficult arena of disability and sexuality, which is a topic I will be focusing on over the coming months. I am excited to announce that I will be working with Dave Brown who is the Principal at The Centre for ICASA, the UK Sexual Healing Centre.

My issues will become clear to those who read this difficult-to-compose open letter, which is written with honesty and openness. Please be aware that this letter does touch upon adult themes though, as always, respect is at the centre of everything that I write.

Please note that the piece of art used below is Girl with Tear by Roy Lichtenstein. I do not hold copyright for this image and this image is not connected with my work in any way.

***

As well as living with Friedreich’s Ataxia, I am also locked in a struggle with two familiar bedfellows of this progressive genetic condition – loneliness and depression. These negative emotions are exasperated by the fact that I cannot fully function in the sexual game of life, despite being in possession of all the necessary equipment and having a healthy sex drive.

There are many reasons why I feel excluded from society. I discussed many of the limitations I feel in my latest book of poetry, Dancing on Thin Ice. I have included many of the poems below between paragraphs trying to explain, with respect at all times, the emotions and frustrations that I face.

I have not been fortunate enough to enjoy much success on the dating scene. The relationships I have had with the opposite sex have poisoned my mind and left me feeling that the ideal union is not attainable.

Fairytale Romance

She’s out there, somewhere

My angelic devotee.

A buxom beauty 

With cascading locks of hair

Residing with pigs that fly

I guess part of the problem is that my idea of the ideal union is far from conventional. I have experienced a conventional relationship in the past, got married, experienced the humdrum reality that people bizarrely seem to strive for. I thankfully found an escape route when my ex proved that her legs were more spreadable than Clover margarine. Suddenly, I was booted out of my stagnant position of a husband and free to build a life of my choosing.

Freedom is not much fun when you live with Friedreich’s Ataxia. There are so many different hurdles put in the way of true equality for those with only the slightest difference from the midstream masses. Ataxians face an arduous assault course full of hazardous pitfalls when aiming towards a level playing field, particularly when it comes to the dating scene.

For Your Entertainment

I am undateable

According to Channel Four

Look at the cute crips

Patronise at your leisure

While society stands still

In the ten years I have been divorced, I am proud of what I have achieved. I am the author of two books, I have been awarded an Honorary Fellowship for my work in Disability Rights by Glyndwr University and have led the successful #SaveWILG campaign to help protect independent living for those with high support needs in Wales. This is in addition to maintaining and designing my quirky bachelor pad and travelling across England and Wales. However, I remain unlucky and frustrated in my relations with the opposite sex.

Don’t get me wrong, I have plenty of female friends who are very important to me, but I am missing out on that special someone who I can become intimate with. To make this situation even more depressing I have been robbed of all dexterity due to the effects of FA. I shouldn’t have to paint a picture of the limits this means that I face. The options open to most men with regard to sexual release just aren’t there for me.

The most worrying aspect of this is to my general health. The following paragraph was taken from Reuters Health:

” Ejaculation frequency could be a sign of overall health. … (Reuters Health) – – Men who ejaculate often may have a lower risk of prostate cancer than their peers who don’t do it as frequently, a U.S. study suggests.”

So what is the solution? Every time I pluck up the courage to discuss the issue with the doctor I am fobbed off through sheer embarrassment. It is an area that people don’t feel comfortable discussing, but if it saves lives then it must be worth opening up about.

As I can’t do anything with my own, useless pair of hands then the obvious answer is to find someone with hands that would help. This is not an easy thing to do. I have been trying for ten years. I have had one or two successful arrangements that were fun while they lasted, but had no long term stability. Frustratingly, they also cost me a pretty penny. Oh to be desirable without financial incentive…

The problem is trying to achieve a perfect settlement whilst also making sure all parties maintain their dignity and self-respect. I have no desire to merely use a member of the opposite sex for my own sexual gratification. I much prefer to build a true friendship that has an intimate element to it. This sounds acceptable on paper, but in the real world it is extremely difficult to find. It is not as if you can approach someone in the supermarket and ask if they would be interested in a friendship whilst enquiring about the strength of their wrists.

Superficial Puzzle

Unrequited lust

Equals a half-empty bed

Desexualised

Hunting down the missing piece

Undesirable, alone

I can spend so much money on simply meeting a sexual need. Ejaculation is good for our physical and mental well-being, so I find it strange that it is not discussed more openly and seriously. Why do I feel so sleazy writing about something that will help my health? The simple fact is that I do not believe that I should have to fund something that I need to stay healthy.  If I lived in the Netherlands I believe I wouldn’t have to consider using my own money to fulfill a biological function.

The following link takes you to a page that explains all about sex care and how it works in the Netherlands. This should be read by everyone, without embarrassment. It is something that I would like to see established in the United Kingdom, but I know how difficult it will be for our antiquated, Victorian nation to follow the lead of a progressive, liberal country.

In the meantime, I will have to find the money from somewhere to keep myself in order. The only other cheap alternative I have at my disposal is phone sex. Over the years I have spent a small fortune on Premium Rate phone lines. This has only ground to a halt now that I receive 24/7 support and therefore do not feel comfortable indulging in sex chat while there is someone else in the room. I would not dream of putting any of my support workers in such an uncomfortable situation. However, this does not help me and my needs.

Hanging On The Telephone

Compulsive habit

Born out of pure loneliness

Premium phone calls

Cost money and dignity

Victim of the modern world?

I suppose I should be grateful that I am no longer running up huge phone bills after paying 51p per minute or something extortionate like that. It became an unhealthy compulsion that I didn’t even enjoy. After the show was over I would be left bemoaning the situation I found myself in and I would always end up apologising to the woman on the other end of the phone. They would always be puzzled about why I felt the need to apologise. I guess I am just a decent human being and I don’t like the idea of using anybody for my own sexual gratification. Unfortunately, needs must and no one was ever hurt or offended…

I am always aware that time is at a premium as I search for an unconventional partner in crime. The median age of death for people living with Friedreich’s Ataxia is 35. I am rapidly approaching my 43rd birthday. The closest I have come to finding the perfect match at the moment is through my relationship with my friend Robyn who I wrote the following Tanka about:

Wonder Woman

The  ideal union

A new woman in my life 

Plastic fantastic

Her perfectly formed figure

Mannequin in lingerie

Of course, I have a number of close female friends who I value and respect greatly. I am a good guy, therefore I also have the same amount of respect for their husbands and partners. Friendship comes easy to me, it is steering relationships down a more intimate avenue that I have difficulties with.

I think I have covered most of the bases in this article. There are so many stories that I could share about being “ghosted”  or the multiple times I have put myself in danger for the allure of trying to create an intimate situation through sex workers. I often get confused between love and sex, as it took me way too long to realise that neither of these mean anything without the other.

Square Peg, Round Hole

Attempting an impossible fit

Without wishing to look an utter tit

Will that spaz ever manage it?

Square peg, round hole

 

Acceptance is what we strive for

A level playing field, no more

Let me display my regular, everyday, humdrum core

Square peg, round hole

 

Accessibility would be a start

Open the barriers to superficial hearts

And be rewarded with love that won’t tear you apart

Square peg, round hole

 

Conformity with the masses is a must

Difference as sexy as a stale pie crust

Something, something that leads to lust

Square peg, round hole

 

Fed up already of this rhyming lark

Guess I ain’t no John Cooper Clarke

How the hell will I make my mark?

Square peg, round hole

 

Instead of copying another man’s style

I need to go the extra mile

Writing personally with added guile

Square peg, round hole

 

Breaking free from restrictions

While penning accurate descriptions

In free-form style – it’s what I need to do

Square peg, round hole

 

So I guess I’ll never fit

Into your confines, YOU utter tit

I’ll be myself – get used to it

Square peg, round fucking hole

This article is not an advert, but if you are in a position to offer solutions to the situation I find myself in then please feel free to contact me in private via nathanleedavies @ gmail.com

Disability News Service: Welsh government ignores social care funding crisis… in independent living action plan #SaveWILG

The following is an article written by John Pring on his excellent Disability News Service website. This can be accessed by clicking here. 

I have been put in a difficult position following the publication of the Welsh Government’s new framework on independent living – Action On Disability – The Right to Independent Living.

I have been extremely critical of this new legislation, but I want to make it very clear that this is a separate issue to my WILG campaign. I will be forever grateful to the Welsh Government for listening to campaigners and acting decisively. Our new First Minister and the Deputy Minister for Health and Social Services deserve particular praise for their hard work and determination to protect a vulnerable section of society.

However, I hope both Mark Drakeford and Julie Morgan can appreciate why I  have to speak out against the new framework due to the lack of consideration of social care. I am a proud member of the Labour Party and fully support the vast majority of the party’s policies, but I reserve the right to be critical of specific programmes and will campaign to improve them.

***

The Welsh government has completely ignored the social care funding crisis in a new action plan aimed at ensuring disabled people’s right to independent living.

A public consultation process with disabled people and disability organisations led to “multiple calls” for increased social care funding.

But the final version of the Labour government’s framework and action plan on the right to independent living – which includes 55 actions – says nothing about the funding crisis or the need for more spending on adult social care.

This contrasts with its 2013 framework, which it replaces and which included lengthy sections on access to social care, direct payments and personalised support.

In discussing the engagement process, which took place in 2017, with further engagement late last year on a draft version of the framework, the document says: “We heard that cuts to social care provision have led to lower allocations for Direct Payments which means disabled adults and young people are becoming increasingly isolated and impact to their well-being compromised.”

It also admits that there were “multiple calls for increased funding for health and social care” during that process.

But despite those calls, not one of the 55 actions in the plan mentions social care funding, or the need to address the cuts.

Instead, the action plan details wider measures around independent living, including: barriers to employment; recruitment of disabled apprentices; a review of funding for housing adaptations; collecting evidence on disability poverty; and improving access to health services.

It also includes a planned review of the disabled students’ allowance system; a pledge to improve understanding of the social model of disability across the Welsh government; and action on access to public transport.

There is also a pledge to introduce a scheme in Wales to provide financial support for the extra costs of disabled people seeking election to local councils, to match schemes in Scotland and England.

Nathan Lee Davies, a leading disabled campaigner who has helped secure concessions from the Welsh government on the impact of the closure of the Independent Living Fund (ILF), said the omission was “bemusing” and appeared to be a “major step backwards”.

A spokesperson for the Welsh government refused to comment on the failure to mention cuts to social care funding in the action plan.

But Jane Hutt, the Welsh government’s deputy minister and chief whip, who has responsibility for equality issues, said in announcing the new framework that “supporting people to live their lives in the way they choose is the right thing to do”.

She said the framework sets out how the government was fulfilling its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

But the failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government could be in breach of the convention’s article 19.

Article 19 says that governments signed up to the convention should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

Despite this omission, the framework pledges to “work for continuous improvement in how Wales fulfils its obligations with regard to [UNCRPD] and the Rights of the Child”.

There is also no mention in the document of ILF, and the Welsh government’s decision to close its interim Welsh Independent Living Grant (WILG) scheme, which it had been running as a stopgap with UK government transition funding since ILF closed in June 2015.

WILG closed on 31 March 2018, when the £27 million a year funding provided by the UK government to maintain support to former ILF recipients transferred to local authorities in Wales.

Because of the WILG closure, Welsh local authorities are now solely responsible for meeting the support needs of all former ILF-recipients.

More than 1,200 former ILF recipients will now have their needs met through council funding, while 50 of them have requested an independent assessment of their new support package, a process being funded by the Welsh government following a campaign led by Davies over concerns about post-WILG support.

A Welsh government spokesperson said: “The Welsh Independent Living Grant was introduced as an interim measure to support people who received payments from the UK government’s Independent Living Fund which closed in 2015.

“Our new framework focuses on the future of independent living in Wales, and what Welsh government can do to support disabled people going forward.”

Davies said: “On the face of it the new framework that has been introduced by the Welsh government, following a lengthy consultation process, is as bemusing as it was when [the draft version] was originally launched last year.

“It seems as if I wasted my breath at two consultation days as many of the failings of the framework that I highlighted have failed to be addressed in a [document] that does not seem to address the needs of disabled people with high support needs.

“Social care does not seem to be addressed at all. This is an absolutely bizarre situation when discussing a framework supposedly designed to promote independent living for disabled people.

“Not one of the 55 actions in the action plan mentioned social care funding, which is extremely worrying.”

He added: “After achieving success with the #SaveWILG Campaign – where former ILF recipients have been offered the opportunity of an independent assessment if they disagreed with the decision of the local authority, all funded by the Welsh government – it was hoped that this would signal a change in attitude going forward.

“The dynamic brand of 21st century socialism introduced by first minister Mark Drakeford has delivered positive change that deserves to be recognised.”

But he said the new framework and action plan “seems like a major step backwards”.

He added: “It just seems that the socialist values that the Welsh government demonstrated with their reaction to the WILG campaign have not been utilised in the new framework.

“It does not sit well with me to criticise this new [document], but the fact that it seems to blatantly flaunt the UNCRPD article 19 is a major cause for concern.

“It would be very easy for me to ignore this as WILG recipients have now been protected, but as a disabled activist I remain vigilant to the needs of my disabled brothers and sisters across Wales.

“All disabled people with high support needs should be able to access adequate social care and I will not rest until justice prevails for those in need.”

Rhian Davies, chief executive of Disability Wales (DW), who led the national steering group on the framework, welcomed its publication, particularly “the renewed commitment to implementation of the [UNCRPD] and consideration of options to incorporate this and other UN treaties in Welsh law together with a stronger focus on the social model of disability and proposals to tackle the disability employment gap and support disabled people to take up positions in public life.”

But she added: “Some aspects of the action plan are stronger and more developed than others, often in those areas where disabled people have been closely involved in informing and influencing policy.

“With regard to social care, there appear to be relatively few initiatives cited in the action plan compared with other policy areas.

“Key issues raised during the consultation are omitted, including low take-up of direct payments, provision of advocacy services, WILG developments and the impact of austerity on social care as a whole.

“We understand that the action plan is a work in progress so DW will continue to press for these issues to be addressed, including through Welsh government’s Disability Equality Forum which plays a vital role in monitoring implementation of the framework.”

Disability News Service: Failure to extend ILF transition funding would be ‘another nail in coffin’ #SaveWILG

Following the positive news from the Welsh Government in providing an independent reassessment for WILG recipients should they be unhappy with the reassessment from local authorities, comes more uncertainty.

I had been looking forward to spending the rest of my life without having to worry about the ability to live my life independently. However, the following article by John Pring of Disability News Service, underlines the uncertainty that disabled people with high support needs face, due to fears that the buffoons in Westminster will fail to provide the vital grant that former ILF recipients need. 

I would like to ask those who have worked hard to protect recipients of the Welsh Independent Living Grant, if we will still be protected if the grant from Westminster fails to be continued?

Just when I thought I could relax…

***

The government has failed to ease fears that it plans to scrap a vital grant that has been supporting former users of the Independent Living Fund (ILF) for more than three years.

The four-year Former ILF Recipient Grant was agreed in February 2016, with the government agreeing to provide £675 million over four years to local authorities in England.

The announcement of the grant was a significant victory for disabled activists, whose direct action protests had ensured that the plight of former ILF recipients remained a high-profile issue after the fund’s closure on 30 June 2015.

The recipient grant was not ring-fenced, so councils were not forced to spend it supporting former ILF-users, but it has allowed thousands of disabled people with high support needs to continue to live independently since ILF’s closure.

But disabled activists have now pointed out that the four years of funding is due to end next April, and there has been no mention by ministers of any extension to the grant.

And when Disability News Service contacted the Ministry of Housing, Communities and Local Government this week, it refused to say if an extension of the funding was being considered.

Instead, a spokesperson said: “The upcoming [cross-government] spending review will be our opportunity to look at funding for local authorities in the round and work is well underway to secure the resources and flexibilities councils need to deliver services for communities across the country.”

John Kelly, a former ILF-recipient and prominent campaigner, who lives in south-west London, said that any decision to end the grant would be “another nail in the coffin”.

He said: “I don’t want to be alarmist, but things are so awful at the moment that we could be saying goodbye to our rights to independent living, where the limited options on offer could be going back to living in care homes.

“Our predictions when ILF closed have all come true. We said it would be a postcode lottery. It is.

“We predicted the closure would be a drip, drip erosion of our ability and rights to an independent full life.

“We said that people’s packages may be cut. Some disabled people’s packages have been cut.

“We said local authorities wouldn’t be able to cope with applying the principles of independent living to our lives, because all they would be worried about was very basic care needs, because their budgets have been cut. That’s happening.

“We’re in a crisis. That’s not our words, that’s the directors of social services saying it.

“We knew local authorities wouldn’t be able to cope with the freedoms that ILF did give. Those freedoms are being threatened more and more.

“And we knew that ILF was working and those freedoms should have been given to more disabled people, not less.”

He added: “In the spending review, they must ensure that that money continues, but critically our rights to independent living must also be reconsidered, protected and actually furthered.

“My life is more than a one-hour call to make sure I am fed and watered.”

Ellen Clifford, a member of the national steering group of Disabled People Against Cuts, said the government had been “shamed” into providing the transition grant through the efforts of disabled activists.

One example was DPAC launching a direct action protest in the lobby of the House of Commons, days before ILF was due to close, with activists nearly succeeding in breaking into the main Commons chamber during prime minister’s questions.

But she said the transition funding provided by the government, including the four-year extension agreed in 2016, was never ring-fenced.

Clifford said: “Even before the ILF closed some local authorities started making dramatic cuts.

“It has been a complete postcode lottery from area to area.

“If the grant is ending, it will be a terrible blow to former ILF recipients whose local authorities have been protecting their support packages.

“We would be likely to see an even greater level of re-institutionalisation, neglect, denial of opportunity and dehumanisation of people with high support needs living in the community and a greater pressure to go into segregated institutions against their wishes.”

She called on disabled people and allies to support the Reclaiming Our Futures Alliance’s Independent Living for the Future campaign, which calls for a new national independent living service that would eliminate the postcode lottery in support, and finally make the right to independent living a reality.

ILF was originally funded by the Department for Work and Pensions, and when it closed on 30 June 2015 it was helping nearly 17,000 disabled people with the highest support needs to live independently.

But ministers decided it should be scrapped, promising instead that nine months’ worth of non-ring-fenced funding would be transferred to councils in England and to devolved governments in Wales and Scotland, to cover the period until April 2016.

It then agreed to extend that funding to English councils for another four years.

There were separate arrangements in Scotland and Wales.

Scotland set up its own Scottish Independent Living Fund on 1 July 2015, after the closure of the UK-wide ILF.

In Wales, a temporary replacement for ILF, the Welsh Independent Living Grant (WILG) scheme, ran from July 2015 but was due to close this spring and be replaced by a system of council-funded support.

But the closure was paused, after campaigning by disabled activists and allies, to allow all WILG recipients to request an independent reassessment of their new council support packages, with the Welsh government promising to fund the reassessments and any extra support they might need as a result.

Image (4)

A National Independent Living Support Service #Right2IL

The following article was taken from the Disabled People Against Cuts (DPAC) website and can be read in full by clicking here. 

The Reclaiming Our Futures Alliance, a network of  disabled people and our organisations in England, is asking for support for a bold new vision for independent living* for the future. (* The phrase ‘independent living’ is not about disabled people doing things on our own, it means having choice and control over our own lives, being included in the community and having the same chances to take part as other people.)

The social care and mental health systems are currently in crisis and as a result disabled people’s rights to an adequate standard of living, to dignity and inclusion and to equal participation in society are being taken backwards.

In its present state, the system is not fit to respond to current needs, let alone predicted greater needs in the future. Disabled people’s experiences of support are subject to a post code lottery and differ considerably depending upon impairment.

Disabled people and our organisations are calling for a better system guaranteeing consistent levels of adequate support. This will not only benefit us and our families but will strengthen wider society, save costs in other areas and produce social and economic benefits.

Our vision of a national independent living support system is set out in the position paper “Independent Living for the Future” which you can download above or below for the easy read version.

Please sign up in support using the form at the end of this page and help us reclaim disabled people’s futures by making our vision a reality. [The form is published on the DPAC website and can be found by clicking here]

NILSS-1-218x300

Download report here: NILSS_final

Sadly, I couldn’t attend Thursday’s meeting at the Houses of Parliament, but Ellen Clifford of DPAC kindly read out the following message on my behalf:

“Good afternoon to everyone and apologies that I cannot be present today. As a disability activist who has spent the last 4 years campaigning for the protection of independent living for former ILF recipients in Wales, I feel that it is important to contribute to the meeting. I believe that it is essential that disabled people in Wales are also represented in the creation of any independent living scheme that we campaigned for.
 

The Welsh Independent Living Grant was given to former ILF recipients as a temporary measure while future arrangements were discussed. In November 2016, the Welsh Government announced they would be scrapping the grant and transferring all funds to local authorities. This could not be allowed to happen and we have campaigned tirelessly and imaginatively to push the Welsh Government into making a u-turn. Independent Social Workers and extra funds have been promised by the Welsh Government to ensure former ILF recipients can remain in their local communities.

Even though the #SaveWILG campaign has been a success in protecting the rights of former ILF recipients, the Welsh Government are not planning to extend these rights to disabled people who missed out on the ILF. Our campaign has produced a positive result for approximately 1,300 of us, but this does not mean we can forget about those who never received the Welsh Independent Living Grant. We do not believe any disabled people with high support needs should be purely at the mercy of cash strapped local authorities. 

 

The tripartite system that the ILF established – between recipient, local authority and independent social worker – should be something that we all receive. I would welcome the opportunity to be part of the ROFA campaign and share the skills and tactics that we have built up during our successful campaign. Please do keep in touch and let me know  how the people of Wales can get involved. There may be a different legal system in Wales to contend with, but I believe that any Welsh Political Party would welcome the opportunity to work with the UK Government to protect disabled people with high support needs.

Many thanks for allowing me to be part of your discussion and let us hope that this is the beginning of a new campaign that will result in justice for disabled people and their families. 

 
 Solidarity to you all. 
 
Nathan”

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.

Vital Twitter Thread #SaveWILG

This morning I published a vitally important Tweet thread that I hope will capture the attention of those with the power to provide security to the 1,300 disabled people with high support needs throughout Wales who receive the Welsh Independent Living Grant.

I publish memes and photographs alongside these Tweets. If you want to follow me on Twitter and perhaps Retweet my epic thread, my handle is @nathanleedavies

I am currently extremely busy as we head into a crucial month for the #SaveWILG campaign.

The fight continues…

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The following Tweet thread is VERY IMPORTANT. I trust that ALL Assembly Members and those in the Media with the power to spread awareness of the struggles of disabled people with high support needs will READ THIS in full and take the appropriate action to help us

There can be no denying that the WILG transition process is highlighting some major problems in the social care system throughout Wales. Local authorities cannot be trusted to provide adequate support for disabled people on their own.

The evidence is overwhelming as displayed in the Freedom of Information requests gathered from all 22 LAs, first-hand stories from WILG recipients and clear evidence that the same system is failing people in England.

 The amount of support for #SaveWILG has been incredible. Jeremy Corbyn, John McDonnell, MPs, AMs and celebrities such as Ken Loach have all backed our campaign while Welsh Labour members passed a motion at conference to protect the grant.

 A similar motion was also passed by Disability Labour, our friends in Scotland and Northern Ireland also show that there is clearly another way of doing things to protect those with high support needs.

I haven’t even mentioned the UN report which found ‘grave and systematic violations of disabled ppls human rights’, saying it was a ‘human catastrophe’. This was partly based on concerns at the closure of the ILF. @WelshLabour are moving in the same direction. https://www.independent.co.uk/news/uk/politics/government-spending-cuts-human-catastrophe-un-committee-rights-persons-with-disabilities-disabled-a7911556.html …

 I am receiving emails on a daily basis from WILG recipients across Wales telling me about the difficulties they are facing with the transition process. These people are too afraid to speak out due to the fear of reprisals.

 Other recipients are also in the process of taking their LA’s to court and cannot speak out for fear of compromising their case. WILG will not or cannot raise their voice at all – for many reasons such as cognitive impairment, exhaustion or fear of further cuts to their hours.

 The absurd two-tier argument that Welsh Labour are using is absolutely ridiculous. It is to all intents and purposes an equalisation downward, however subtle and however long it takes to materialise. 

The ‘two-tier’ system is entirely the choice of WAG. Not us or recipients. Again, using this as a reason to stop providing what is needed as a basic starting point, is not a reason!!!

The effect being that money (saving) is at the root of this and the standard of life/living for recipients is not likely to be maintained in a way that allows them to have a really fulsome, fulfilled and rewarding life, rather than merely existing….

 I have spent all day writing this thread of Tweets and have sacrificed three years of my life to this campaign for common justice. I will not stop fighting for the rights of disabled people but it is a disgrace that I have to in 21st Century Wales. 

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