UK Government

Paralysed car crash victim calls for sex workers to give discounts to disabled people

The following article was taken from the Daily Star newspaper and can be read in full by following this link. 

I feel the pain of Alex Squires, as described in the article below, only to well. However, I do not believe that escorts should offer discounts to disabled people.

Instead, I think it is the government that should be offering monthly grants for disabled people with high support needs, such as Alex and myself, to unlock the doors to sexual exploration and intimacy for those who cannot easily access such a world. This is similar to what happens in Holland, but sadly it seems a long way away for those of us stuck in the Victorian style UK under a repressive Government.

If I ever manage to secure a full support package from Wrexham County Borough Council this could be my next crusade 🙂

*** 

A paralysed car crash victim is calling for escorts to offer him a discount because he can’t travel to have sex.

Alex Squires, 30, suffered devastating brain damage in a car crash more than two decades ago, which left him with spastic quadriplegia – leaving his muscles stiff and difficult to control.

The Lincolnshire blogger, who uses a chair full-time and relies on round-the-clock care to hoist him in and out of bed, first turned to escorts when his last relationship ended.

Now he wants sex workers to offer him a discount after he found he had to pay for expensive call-outs.

Alex, who lives with his parents in Bassingham, Lincolnshire, said: “One problem that irks me a bit about using escorts is that they always have to be out-calls.

“I can never go to the escort’s place because they aren’t accessible and they don’t have a hoist.

“Out-calls are always more expensive which is a bit frustrating. I would go to their place if I could.

“Maybe escorts should give disabled people a discount so that they are the same price as in-calls.”

Alex says in the past he and his last girlfriend relied on carers hoist him into bed so they could be together.

He now hopes to find an able-bodied partner which would make sex easier.

Alex said: “My last relationship was with a girl who was also in a power chair, so we couldn’t hug or kiss each other when we wanted to, which was frustrating.

“She lived in a care home and when I went to visit the carers would sometimes put us on the bed together and we could cuddle, but I found this a bit awkward as we had to be positioned by the carers which wasn’t very private.

“Once we were in position they left us alone, but I would prefer my next relationship to be with someone who was able-bodied.

“I wouldn’t have the same problem of having to rely on a third-party to be intimate all the time.”

Alex says he turned to sex workers out of frustration because his disability makes it hard to meet people, but he is desperate to find a love.

“Just a cuddle or any type of physical contact is nice, because I don’t have physical contact with anyone on a regular basis apart from my carers,” Alex admitted. “A long-term loving relationship will be much better, because you can’t have love with an escort, but I have hearing loss which makes it difficult to talk to people in noisy environments.

“Most people tend to hang out in noisy places like pubs or clubs, so it’s difficult for me to have a conversation with people in these places.

“This makes it difficult to meet new people.”

Statement from #SaveWILG Campaign at the #Right2IL Campaign launch

On April 25th, the #Right2IL Campaign was launched in Parliament. Unfortunately, I could not be there so I wrote the following which was read out by my good friend and comrade, Ellen Clifford.

Apparently, the message was well-received. I am looking forward to playing my part in the fight for the rights of disabled people to be recognised.

More about the #Right2IL campaign can be read here. 

***

“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 – with the possible exception of Plaid Cymru – would welcome the opportunity to work with the UK Government to protect disabled people with high support needs.

My contact details are as follows:

Twitter: @nathanleedavies

Facebook: https://www.facebook.com/nathanleedavies

Website: https://nathanleedavies.wordpress.com/ 

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”

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”

Disability News Service: ‘Delight’ over breakthrough on Welsh independent living scheme closure

The following article is taken from the Disability News Service website and was written by John Pring. I am taking no credit for the writing of this article and urge readers to visit the Disability News Service website. You can do so by clicking here. 

***

Disabled campaigners have welcomed measures that aim to address concerns over the imminent closure of the Welsh government’s independent living grant scheme.

Julie Morgan, the deputy minister for health and social services, has written to council leaders to ask for an immediate “pause” in the closure programme and its replacement with a system of council-funded support.

There will now be new independent assessments for any former recipients of the Welsh Independent Living Grant (WILG) scheme who are unhappy with the new support packages allocated by their local authority.

The new measures came just two weeks after Nathan Lee Davies (pictured), who has led the campaign to save the WILG scheme, sent an 80-page dossier of evidence about the closure to Welsh Labour’s new leader and first minister, Mark Drakeford.

Davies told Drakeford in an open letter accompanying the dossier that closing WILG would leave disabled people with high support needs, like him, “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”.

He sent his letter with just two months to go until the interim WILG scheme was due to close.

Now Morgan has announced a pause in the transition to the new system.

WILG was set up – with UK government funding – as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.

The Welsh government is now closing WILG for good and transferring the funding to local councils, and by April the 22 local authorities were due to be solely responsible for meeting the support needs of all former ILF-recipients in Wales.

But in a written statement to assembly members, Morgan said she had considered the evidence and decided there needed to be a “change in direction” because her government’s own review had shown a significant variation in how support packages were being cut by different councils.

Morgan said that all WILG recipients who were unhappy with their new care and support package and would like a second opinion would now be offered an independent assessment.

These assessments will be funded by the Welsh government, which will also pay for any resulting additional hours of support.

The government said that the new assessments would “acknowledge the historical entitlement of former ILF recipients”, while Morgan told assembly members in a written statement that there would be “no financial barrier [so]no-one need have less favourable care and support than they had under ILF”.

Morgan, who praised Davies and his fellow campaigners, said: “It is paramount that people’s ability to live independently is not compromised by changes to the care and support provided for people previously in receipt of the Welsh Independent Living Grant.

“These changes will ensure that is the case and deliver a consistent level of care and support across Wales.

“While the majority of former ILF recipients are receiving the same or more care as they were previously, a significant number have experienced a reduction in hours of support.

“There is also considerable variation in the reductions in support.

“I have therefore written to local government leaders to request a pause of the transition with immediate effect in order to bring in the revised arrangements.

“This is a significant change of approach that ensures that the needs of former WILG recipients will be fully met, and that resources are no barrier to a full package of care and support.”

Davies, who was celebrating his birthday on the day of the announcement, said it was “the perfect 42nd birthday gift”.

He said later in a statement: “I would like to place on record my delight at the breakthrough we have made.”

He added: “It is a pleasure to be working with our new first minister Mark Drakeford and his revamped cabinet that differs substantially from the previous regime.

“Welsh Labour have now successfully re-branded themselves and are moving forward with a clear vision of creating a society based on 21st century socialist ideas.

“There is still some work to be done with Welsh Labour on the new arrangements to support disabled people to live independently.

“I am confident that this work will be carried out constructively and add to the ‘clear red water’ that Welsh Labour are once again setting between themselves and Westminster.

“The fact that the party that I am proud to be a member of, has listened and acted appropriately is really encouraging and gives me hope for the future.”

Disability Wales praised Davies’s campaigning work and the Welsh government for “listening and responding to the evidence” and added: “This is really welcome news for Welsh disabled people who had lost vital support after the ILF closed.”

Disability News Service: Last-ditch appeal to new Welsh First Minister over independent living scheme #SaveWILG

A disabled campaigner has sent an 80-page dossier of evidence to the new first minister of Wales in a last-ditch bid to persuade him to abandon plans to close the Welsh government’s independent living grant scheme.

Nathan Lee Davies has written to Mark Drakeford with just two months left until the planned closure of the Welsh Independent Living Grant (WILG), which was itself set up as an interim scheme following the UK government’s decision to close the Independent Living Fund in June 2015.

Davies, who has led the Save WILG Campaign, told Drakeford in an open letter this week that closing WILG would leave disabled people with high support needs “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”.

He said that local authorities “seem to be treating disabled people as a burden”.

Davies points out in the letter that Drakeford had promised – during his successful campaign to lead the Welsh Labour party last year – that if an independent evaluation of the WILG closure showed the new system “not working as well as the old one” then he would be “prepared to reverse it”.

WILG was set up by the Welsh government – with UK government funding – as a short-term measure to support former ILF recipients when the fund was closed in June 2015.

But the Welsh government is now closing WILG and transferring the funding to local councils, and by April the 22 local authorities will be solely responsible for meeting the support needs of all former ILF-recipients in Wales.

Davies said the “deep dive review” of cases in which WILG recipients were having their support cut was “full of errors” and had failed to consult the disabled people who will be affected.

He pointed to his own experience at the hands of his local authority, Wrexham council, which he said had treated him “abysmally”.

Davies, who has a life-limiting condition, said that the process to reassess his support needs, due to end in September 2018, had still not been completed and was having “a negative impact” on both his physical and mental health.

He described how his social worker had laughed when he suggested he needed 24-hour support and told him that no-one in the borough received that level of support.

He said that the lack of overnight support in his current social care package meant he had to stop drinking at 8pm at night and get ready for bed at 10pm, and often had to call his 68-year-old father to assist him in the night, even though he lives a 10-minute drive away and has arthritis in both hands.

The dossier, which has already been shared with the deputy health and social services minister Julie Morgan, includes a description of a day in his life, from last January, showing the poor level of support he already receives – even before the closure of WILG – and the pain and indignity this exposes him to, as well as the lack of choice and control in his life.

Davies says: “It is 2018 and I am still being treated like a second class citizen.

“I have a progressive condition of the nervous system which is accelerating at quite a rate, yet I still have the same amount of inadequate care and support hours that I did in 2010 when I first began independent living.”

He updated this by posting a new blog yesterday, showing that little had changed in the last year.

In the dossier, he warns the Welsh Labour party: “I do not want to spend the last days of my life completely unnecessarily fighting against the party I have defended and campaigned for across many years.

“But I will if I have to. Please don’t make me.”

The dossier also includes a letter from a director of Disability Wales, Trevor Palmer, in which he says the planned WILG closure has “created serious disruptions” to his life, with local authority “incompetence and lack of understanding” that has led to his support package being “substantially” reduced.

A Welsh government spokesperson said: “We believe that disabled people’s ability to live independently should not be compromised by any changes to the way in which support is arranged for those people who previously received payments from the WILG.

“The first minister has just received Mr Davies’ open letter regarding the WILG and will carefully consider the detailed points it makes.

“He has asked the deputy minister for health and social services to consider what further action may be necessary to ensure disabled people in receipt of the WILG are not adversely affected by this change.

“The deputy minister has provided Mr Davies and the National Assembly’s petitions committee with details of the deep dive review.

“She also met Mr Davies at his home to hear his concerns and discuss the issues raised in his dossier.”

He said the deep dive review had seen the 22 Welsh local authorities audit all cases where they intended to cut the WILG element of people’s support.

This found planned reductions in about 157 cases, and increases in support in a similar number, out of 1,174 people.

He claimed that the cuts had taken place because “some people had developed a need for healthcare rather than social care while some, due to their support being provided in a different way or being of a different type, had a reduced need for care overall”.

He accepted that two questionnaires, commissioned from the All Wales Forum of Parents and Carers of People with Learning Disabilities, had had a low response rate, but he said that responses to it “have been positive about the way assessments have been undertaken and the outcomes people have received”.

Charlotte Walton, Wrexham council’s head of adult social care, said: “We cannot comment on any individual’s care and support needs.

“However we do not accept the allegations being made.

“We have carried out all of the WILG reviews in a person centred and inclusive manner and working with the individual recipients of the fund [has]enabled them to achieve positive outcomes from the reviews.”

Davies said he would now push for a meeting with the first minister.

He said: “I am not going anywhere and will continue to fight this until justice is served.”

Picture: Nathan Lee Davies with Labour leader Jeremy Corbyn

EHRC Report into Disability Rights in Wales #SaveWILG

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

It reads as follows:

Independent living funding

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

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

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

We recommend that the CRPD Committee asks:

Can the Welsh Government explain:


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

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

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

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

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

Response to Letter from Huw Irranca-Davies to the Chair of the Petitions Committee #SaveWILG

Below you can find my response to Mr David Rowlands – Chair of the Senedd Petitions Committee – in answer to the previous letter from the Minister for Children, Older People and Social Care, Huw Irranca-Davies.

 ***

3rd December 2018

Dear Mr Rowlands,

Thank you for giving me the opportunity to respond to the letter you received from the Minister for Children, Older People and Social Care regarding the planned closure of the Welsh Independent Living Grant (WILG).

For this letter I have decided to list my responses to the Minister’s letter in an easy-to-read, bullet point format. This will allow the Committee time to access the key points against the weak arguments put forward by the Minister and the Welsh Government.

Without further ado, I will begin listing the reasons for which we strongly disagree with the Minister for Children, Older People and Social Care.

The Minister begins his letter by stating that the purpose of the changes to Social Care are to end the “two-tier arrangement” that currently exists in order to provide a level playing field to all disabled people. The Minister is referring to a two-tier system that the Welsh Government chose to perpetuate. Meanwhile, during the consultation process ahead of the introduction of WILG, there were a number of other options on the table.  Option 4 proposed opening up the WILG for new applicants. This option was never fully investigated by the Welsh Government who seem averse to investing in people.

    The #SaveWILG campaign fully supports equality across the board and it is a bizarre argument that says essential support should be jeopardised to give equal treatment to all. What is actually happening is an EQUALISATION DOWNWARD, however subtle and however long it takes to materialise. We cannot just sit back and let this happen.

    It is not AND never has been an excuse not to do something because it is “difficult to unpick”. It would ONLY create “turmoil” if the Welsh Government handled it badly. It does not inspire confidence to witness such a lack of self-belief by our elected representatives. Of course, the obvious point is that there is mass turmoil NOW precisely BECAUSE of what the Welsh Government are doing. I’m afraid that those in power will have to put in the hours to make up for their initial mistakes against the warnings from disabled people and their families.

    In his letter, the Minister tries to blind the Committee with statistics. I prefer to concentrate on the human aspect and the number of emails that the #SaveWILG campaign receives regularly. These confidential messages are often found with tales of struggle, depression and desperation. On paper it is easy to ignore the negative effects of policies, but in the real world those that are directly affected deserve to be listened to. A large majority of struggling recipients do not have the ability to speak out against the Government in the way that I have done. Furthermore, many recipients are too afraid of the consequences of criticising Councils that have so much control over their lives.  This was why arrangements under the ILF provided a safety net for disabled people: because assessments were carried out by independent Social Workers, who could not be manipulated by local authorities.

    We are told that the Minister has instructed local authorities to perform a “deep dive” into the WILG transition. How can we begin to trust the findings of local authorities when they are under such immense pressure to cut costs due to a lack of funding from Central Government? Disabled people must be protected in the face of these cuts and not be seen as an easy group to exploit.

    I fully believe that the Welsh Government have a responsibility to support disabled people and should work with them instead of pointing them towards cash-strapped local authorities, many of whom do not have an adequate complaints procedure in place.

    The Minister and his team have repeatedly told us this is not about money. However, when we say that the Government should open WILG to all disabled people, they repeatedly say they can’t afford it. So, it is about money, then?

    This situation has arisen because of the heartless closure of the ILF by the UK Government but the current mistakes confusion, mess and inconsistencies proves that the Welsh Government are heading in the wrong direction.  Disabled people with high care and support needs are the ones paying the price for these errors.

    At no point do we see the Minister or the Welsh Government acknowledging that MOST WILG recipients are not able to contribute on a level playing field to any consultation. There seems to be a complete – I am sure unconscious – lack of understanding about this. People are not machines that fit neatly into box-ticking exercises.

    Informing us of the huge delays already, shows that the turmoil, and lack of a competent working system, already exists. Hence the need to make sure long-term that those who need this support most, do not have to worry about this kind of upheaval on a yearly basis.

    THE most important thing is the healthcare & support for recipients. Many do not have the luxury of time to be fighting this full-throttle. Let me be clear though, there are plenty of us fortunate enough not to be in their position who will never give up or shut up about this.

    QUESTION FOR COMMITTEE MEMBERS: When do we expect to get the full, published, unedited or un-amended report from the review? 

    Thank you very much indeed for facilitating this process. I am grateful to you and everyone at the Petitions Committee for taking the time to listen and consider our strong arguments.

    Yours in hope,

    Nathan Lee Davies

    #SaveWILG campaign