Former ILF Recipients in Greater Manchester

With thanks to Brian Hilton.

On Manchester Radio recently there was a feature on what has happened to former ILF recipients in Greater Manchester.

BBC Radio Manchester submitted FOI to all 10 Greater Manchester authorities asking what had happened to the care support of former ILF recipients. The results revealed that 42% of former ILF recipients had had their care reduced since the closure of the ILF.

The item was revisited through the show (see iPlayer link below) and featured a former ILF recipient called April from Stockport who had had her 62 hours a week care reduced  by 38 hours a week. She can’t go out, urinates in a bottle and has a lift in her house that she is unable to use.

In one of the segments they interviewed John Roust (Chief Executive – Greater Manchester Health & Social Care Partnership) who said they had set up a “Personalisation Team” to look at how social care recipients can better utilise and have more control over the care they receive. One example he gave was recipients pooling their resources. An interesting aside is that John Roust has a disabled daughter, so said he had a personal and professional interest in this issue.

In another section they interviewed Jackie Driver (Chair – Breakthrough UK) who said that cuts were seriously affecting disabled people’s wellbeing. Also, said that Greater Manchester Devolution presented us with an opportunity to address such issues.

The segments were featured at

24 minutes

1 hour and 11 minutes

2 hours and 10 minutes

2 hours and 42 minutes

Here is the iPlayer link if you want to have a listen: http://www.bbc.co.uk/programmes/p04v9nhq

Advertisements

Must-See TV #SaveWILG

Dear Petitioner 

Your petition will be considered at our next meeting on Tuesday 3 October; starting at 9.15am.

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

http://www.senedd.assembly.wales/ieListDocuments.aspx?CId=430&MId=4365&Ver=4

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

http://www.senedd.tv/

Kind regards,

Petitions Committee

Letter from Nathan Lee Davies to the Chair of the Petitions Committee

Thankfully, I had the right to reply to the Minister. I don’t think I made too bad a job of it, do you?

 

Eich cyf/Your ref Petition P-05-771

David J Rowlands AM

Chair

Petitions Committee

National Assembly for Wales

SeneddPetitions@assembly.wales11

28 September 2017

 

Dear Mr Rowlands

Many thanks for accepting my petition at the Senedd on September 20 and for taking the time to listen to my concerns regarding the closure of the Welsh Independent Living Grant     (WILG). I also appreciate the right to reply to the letter regarding my petition written by Rebecca Evans AM.

As outlined in my petition, the Welsh Government put WILG in place with local authorities to enable them to maintain payments to recipients in Wales of the Independent Living Fund (ILF). This was following the closure at that time of the ILF by the UK Government in 2015. The Grant was introduced to ensure continuity of support in the short-term for recipients.

This move did help Local Authorities to support individuals to meet the additional costs of living independently in the community in a similar manner to the financial support they received from the ILF. However, it has not allowed for any increased payments to cover any change in circumstances, a particular problem for those of us with progressive conditions. I had faith that the Welsh Government would resolve this issue after holding a consultation into how best to provide support to recipients in the longer-term, so as continue our ability to live independently.

A stakeholder advisory group was established that included a number of my contacts as well as representatives from local authorities. The advisory group considered a number of potential options to provide support in future to those who used to receive payments from the ILF. These ranged from perpetuating the WILG indefinitely, or for a set period of time, to establishing similar arrangements in Wales to that of the ILF outside of local authorities’ provision [option 4] to having support provided in future through local authorities’ social care. The advisory group considered the advantages and disadvantages of each option in terms of its effectiveness to support former recipients and its fit with supporting the larger group of disabled people in Wales who had been excluded by the UK Government from receiving support from the ILF (as it had in 2009 closed the ILF to new entrants).

I have a real problem with the assertion from the Minister that the stakeholder group were united in agreement with the closure of WILG and the transferring of funds to local authorities. This was quite simply not the case and I request that she provides evidence in support of her claim that “the advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. None of the members of the advisory group opposed this recommendation.” For instance, was a vote held in the stakeholder advisory group? If so, on what date, what was the result, and can the minutes of that meeting please be provided?

I have spoken to several members of the advisory group who DID oppose LA provision. Surely, this calls into question the basis for the Minister’s decision. There’s been a total lack of imagination on the part of the Welsh government in terms of creating an independent living plan that all local authorities must buy into. This would be a guarantee of ensuring equity across Wales.

However, this option [option 4] was not given a fair hearing during the stakeholder sessions despite its popularity across Wales when all options were put out for consultation. We were unforgivably never given the result of this consultation, and it seems churlish for the Minister to say that many people – with high care and support needs and lack of empowerment – did not reply. The percentage of voters in general elections has been disappointing for many years, but that does not make our political representatives invalid. I would also challenge the Minister to release the data collected in the consultation.

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.

The short-sightedness of the Welsh Government is also highlighted by developments in Northern Ireland where they have recently decided to use the ILF model to support all community living for disabled people.

I would like to ask the Petitions Committee to ask the Minister to provide a copy of the Equalities Impact Assessment (EqIA) on which the policy decision was based. If the Minister cannot show a genuine and thorough EqIA then I would have thought the policy change has little legal standing. A former member of the stakeholder group recalls that: “at one stage there was a jump from all options being on the table (including a Welsh ILF) to “this is what’s been decided”, without an EqIA being carried out.”

I think that the future of Independent Living in Wales depends on a robust enforcement of the Social Services & Wellbeing (Wales) Act. If local authorities make genuine efforts to empower individuals to identify and achieve their Personal Wellbeing Outcomes and access all aspects of Independent Living as a civil and human right that would be great. However, I am not holding my breath. The SSWb Act was promoted by officials as “a guaranteed enforceable right to independent living”. This is all positive stuff on paper, but unfortunately disabled people do not live on paper and in the real world we need to see a tough enforcement of this Act. While we wait for this to happen – I do not expect it to be truly functional in my lifetime – we need a necessary protection for those with high care and support needs such as WILG. I would therefore ask the Minister to delay ending WILG until she has concrete evidence that all 22 authorities are genuinely supporting people to achieve their identified wellbeing outcomes. A Stakeholder Group to look at this would be a transparent means to allay people’s genuine fears.

One very practical way for Welsh Government to respond to the UN Disability Committee’s concerns about disabled people’s rights in the UK is to reconsider its misguided policy on supporting former ILF recipients. For more information, please refer to the following link:

https://assemblyinbrief.wordpress.com/2017/09/19/rights-of-disabled-people-how-the-un-committees-findings-relate-to-wales/

I understand that Welsh Government’s Framework for Action on Independent Living is currently being reviewed. I very much hope that the Framework will be strengthened as a result and that in particular, the rights of former ILF recipients will be supported by Welsh Government re-convening the stakeholder advisory group to reconsider its WILG policy.

Finally, I would like to draw your attention to the situation in England following the closure of ILF in 2015 when money was transferred to Local Authorities in the same manner that is being proposed by the Welsh Government.  This cannot be allowed to happen in Wales.  A report by the Department for Work and Pensions (DWP) shows that former recipients of the ILF in England experienced a loss of support, a greater reliance on unpaid care and an “adverse” impact on their physical and mental health after its closure. All of these concerns were raised by disabled activists who campaigned against the decision to close the fund, before it shut in June 2015.

Those former recipients who saw their support “heavily reduced” as a result of the closure – which saw non-ring-fenced funding passed by the government to local authorities – “experienced multiple changes” to their lives.

The report says: “They argued that reductions in care were unfair and denied them opportunities to participate fully in society.

“They encountered changes and restrictions to daily activities, including less support for engaging in leisure activities, work and volunteering.”

Some of those who took part in the DWP study said that the “heavy reduction in care” they had experienced had damaged their physical and mental health, with effects such as loneliness, weight loss, and frailty “due to worry, or due to the physical demands of having to perform everyday activities without the support of a carer”.

I have also included three links at the bottom of this letter that will lead you to further information and reports on the dire situation that disabled people find themselves living with in 21st Century England. This is hardly in keeping with the Welsh Government’s landmark SSWb Act.

I could go on and on all evening about the problems that the closure of WILG will present to disabled people and their families. I haven’t even mentioned the impact it will have on support workers who rely on WILG for their income. As an employer, I do not want to have to tell my team of personal assistants that I will no longer be able to employ them.

In May 2015, I was told by my Local Authority, that without the protection of WILG my hours of care and support could be reduced from 86.5 hours a week – totally inadequate for someone with a rapidly progressive disease – to only 31 hours per week. As an active member of the community, this would cause isolation and depression. I have no interest in merely existing. I want to live my life like everybody else and I feel that I have become an integral part of my community through involvement with Disability Wales, the Care and Social Services Inspectorate for Wales, Glyndwr University, Wrexham AFC and FDF Centre for Independent Living. This is not to mention my work as an author and poet while I have also been awarded an Honorary Fellowship from Glyndwr University for my work in Disability Rights. To have my hours reduced so drastically – as threatened by my social worker – would have a devastating impact to me and others.

I wish I could write more but time is at a premium. I look forward to hearing the outcome of the petition committee’s discussions and have faith that the National Assembly will not turn their backs on disabled people with high care and support needs.

Should you need any further information please do not hesitate to get in touch using my contact details above.

Yours sincerely

Nathan Lee Davies

 

Please find below links to three different reports into the effects of the ILF closure in England:

https://www.gov.uk/government/publications/independent-living-fund-post-closure-review

 https://www.inclusionlondon.org.uk/campaigns-and-policy/facts-and-information/independent-living-social-care-and-health/ilf-one-year-on/

 https://www.disabilitynewsservice.com/independent-living-fund-shocking-drop-in-support-after-ilf-closure/

 

In addition, I have added some links below concerning my own fight for the continuation of WILG:

http://www.leaderlive.co.uk/news/2015/07/07/gallery/our-fight-to-fund-independent-lives-in-flintshire-and-wrexham-74959/#.VZu96zMTWf4.twitter

http://www.disabilitynewsservice.com/welsh-government-has-sold-disabled-people-down-the-river-on-post-ilf-plans/

http://www.bbc.co.uk/news/uk-wales-politics-38385381?SThisFB

https://nathanleedavies.wordpress.com/save-wilg-campaign/

https://www.disabilitynewsservice.com/disabled-activist-is-fighting-for-his-life-as-he-hands-petition-to-welsh-government/

Letter from Minister for Social Services and Public Health to the Chair of the Petitions Committee

David J Rowlands AM

Chair

Petitions Committee National Assembly for Wales

SeneddPetitions@assembly.wales

21 August 2017

Dear David,

Thank you for your letter seeking my views on a petition submitted to the Petitions Committee by Nathan Lee Davies in relation to the closure of the Welsh Independent Living Grant.

As Mr Davies outlines in his petition, the Welsh Government put in place in 2015 the Welsh Independent Living Grant (WILG) with local authorities to enable them to maintain payments to recipients in Wales of the Independent Living Fund (ILF). This was following the closure at that time of the ILF by the UK Government. We introduced this grant to ensure continuity of support in the short-term for recipients. This was to help them meet the additional costs of living independently in the community in a similar manner to the financial support they received from the ILF. This arrangement was to provide time for us to consider the most appropriate way to provide support to recipients in the longer-term, so as continue their ability to live independently.

As Mr Davies indicates, to assist with our consideration of what that longer-term support should be a stakeholder advisory group had been established. This had representation from the organisations which represent and act for disabled people in Wales (such as Disability Wales and the Dewis Centre for Independent Living), representation from local authorities and some recipients themselves. The majority of the representatives on the advisory group were, as Mr Davies says, from the third sector or had themselves received payments from the ILF. This was because we wanted advice from those who fully appreciated the outcomes disabled people seek and what they required from the arrangements we were to put in place to support their independent living.

The advisory group considered a number of potential options to provide support in future to those who used to receive payments from the ILF. These ranged from perpetuating the WILG indefinitely, or for a set period of time, to establishing similar arrangements in Wales to that of the ILF outside of local authorities’ provision, to having support provided in future through local authorities’ social care. The advisory group considered the advantages and disadvantages of each option in terms of its effectiveness to support former recipients and its fit with supporting the larger group of disabled people in Wales who had been excluded by the UK Government from receiving support from the ILF (as it had in 2010 closed the ILF to new entrants).

I am not sure why Mr Davies thinks the advisory group wished to keep the WILG. On the contrary, overall it accepted that the arrangements we had put in place through the WILG could only ever be temporary while a longer-term solution was found. After considering the potential options in the light of the issues I set out above, the advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. None of the members of the advisory group opposed this recommendation.

The advisory group favoured this option as it matched the future support former recipients would receive with that being provided generally to disabled and older people in Wales. This is through our new person-centred ethos for social care being delivered through the Social Services and Well-being (Wales) Act 2014. The Act came into effect from April last year and changes the way people’s needs are assessed and the way support is delivered. People now have more of a say in the well-being outcomes they wish to achieve and the care and support they require to deliver those outcomes. This is similar to the ethos behind the original establishment of the ILF. The Act also contains stronger powers to keep people safe from abuse and neglect.

The advisory group also saw this option as the way forward as it removed the inequitable two-tier approach which currently exists to supporting disabled people in Wales, with some receiving only support from their local authority, while others can receive this as well as dedicated payments from the WILG.

It is also important to note that prior to the advisory group’s considerations we undertook a public consultation on a number of possible options to provide support in future. While it is true that the majority of those who responded favoured arrangements in Wales similar to those of the ILF, this was not the option favoured by all recipients who responded. Indeed the vast majority of recipients did not respond to the consultation at all. Nevertheless, my officials did contact those in the Scottish Government to establish the basis of the dedicated support arrangements for former ILF recipients in Scotland and the possibility of those arrangements being extended to Wales.

While ILF Scotland could administer and make payments on behalf of the Welsh Government, it became clear it would not be in a position to do this for a considerable period of time. In addition, it required significant set-up and operating funding to administer our payments, totalling in the first year of operation well over £1 million with annual operating funding in excess of £0.750 million. Such funding would have needed to be top-sliced from the overall funding available to support former recipients in Wales, thereby substantially reducing the funding available for their support itself. On this basis we did not believe that these arrangements would be acceptable given the reduction in support to which it would lead, or that they provided good value for money. Overall the advisory group shared this view and was keen that already limited funds were not used disproportionately on establishing and maintaining separate arrangements to provide support.

Consequently, I accepted the stakeholder advisory group’s advice to have support to former ILF recipients in Wales provided in future by local authorities as part of their social care provision. To put this into place the advisory group also recommended that there should be a two year transitional period, whereby in the first year authorities establish all recipients’ desired well-being outcomes and agree with them the support they require to achieve these. In the second year recipients would transfer over to receiving all of their support from their local authority, with their payments under the WILG ceasing at the point at which this occurred. I also accepted this recommendation in full, with as a result the transitional period commencing from 1 April this year and due to conclude on 31 March 2019.

Clearly those who wished to see a different option chosen will be disappointed with the decision taken. However, that decision did not ignore the advice of the representatives of disabled people in Wales on the stakeholder advisory group but was fully in accordance with it.

Yours sincerely,

Rebecca Evans AC/AM

Gweinidog Iechyd y Cyhoedd a Gwasanaethau Cymdeithasol

Minister for Social Services and Public Health

 

You Couldn’t Make It Up…

According to Wikipedia, Tanka (短歌, “short poem”) is a genre of classical Japanese poetry and one of the major genres of Japanese literature.

A Tanka consists of 5 lines and 31 syllables. Each line has a set number of syllables see below:

Line 1 – 5 syllables
Line 2 – 7 syllables
Line 3 – 5 syllables
Line 4 – 7 syllables
Line 5 – 7 syllables

This is my 127th poem of 2017 and I am well on my way to putting together a collection of poems to reflect the struggles of disabled people in 21st century Britain. I would like to publish these poems in a book to be released in 2018, and I am close to finding a team of illustrators to help me add images to my words and create the type of book that I envisage.  I am speaking with students from Glyndwr University who are interested in collaborating with me on this exciting project. Two of the talented artists who have agreed to illustrate my work are Julie Rogers-Owen and Heather Wilson. Samples of their work can be found by clicking on their names. There are other artists involved but I do not have links to their work at the moment. I hope to rectify this soon.

Him? Really? You sure?

That charmless cockney bell-end?

Unbelievable

Hopes raised, dreams dashed, heart shattered

The better man lost, again

 

Disabled activist ‘is fighting for his life’ as he hands petition to Welsh government

THIS ARTICLE ORIGINALLY APPEARED ON THE DISABILITY NEWS SERVICE WEBSITE AND WAS WRITTEN BY JOHN PRING.

A disabled activist has handed in a petition of hundreds of signatures that calls on the Welsh government to reverse its decision to close its version of the Independent Living Fund (ILF).

Nathan Lee Davies (pictured) says he is fighting the decision to scrap the Welsh Independent Living Grant (WILG) because he is terrified of the prospect of his cash-strapped local authority taking over full responsibility for providing his care package.

He has been told that without WILG his own care package would be reduced from 86.5 hours to just 31 hours a week.

He says that such a cut would put an end to all his current community activities, including his involvement with Wrexham Glyndwr University, Wrexham football club, Disabled People Against Cuts, FDF Centre for Independent Living, and the Care and Social Services Inspectorate Wales.

He is also writing two books, and a blog, and is working with Disability Arts Cymru to create a performance and exhibition of his poetry.

He told Disability News Service (DNS): “I cannot cope with such a limited number of hours per week. This is why I am fighting with every fibre of my being.

“It really is a case of life or death. I have no interests in merely existing. I want to live.

“Without help and support I would be unable to do any of this work that involves me in the community.”

The Labour-run Welsh government announced last November that, after a two-year transition period, it would transfer all of the £27 million-a-year provided by the UK government to support former ILF-users in Wales directly to councils.

There will be no new Welsh ILF – even though such a scheme has been set up in Scotland – and no continuation of the interim WILG scheme the Welsh government has been running as a stopgap to “ensure continuity of payments to recipients” since the Department for Work and Pensions closed ILF in June 2015.

Funding for WILG will now transfer to local authorities during 2018-19, with all former ILF-recipients in Wales having their support needs met solely by their local authority by 31 March 2019.

Since the Welsh government’s announcement, Davies has been campaigning to persuade it to reverse the decision, including setting up the petition – which has now been signed by more than 500 people online and in person – and collecting photographs of supporters holding one of his campaign postcards.

He said: “The current system allows users the security of depending on receiving their funding from three different ‘pots’ – WILG, local authorities and our own personal contribution.

“This gives us a sense of security and ensures that we cannot be dictated to as mere passive recipients.

“Instead, all parties have to be in agreement about what will benefit the individual the most.

“This is something worth fighting for.”

But instead of this three-tier system, he said, the Welsh government had now “sold disabled people down the river.

“They are washing their hands of all responsibility for social care to former ILF recipients and transferring the pressure onto local authorities.”

A Welsh government spokeswoman told DNS in a statement: “Organisations that represent disabled people who have been recipients of the Independent Living Fund, recommended that their future support would be best provided through local authority social care provision, with consistent arrangements in place to support disabled people in Wales.”

But Disability Wales, which was part of the stakeholder advisory group the Welsh government consulted, has made it clear to DNS that it did not support passing funding to local authorities.

The Welsh government added: “We would be surprised if Disability Wales were suggesting that certain disabled people in Wales should have their support needs met in a different way to other disabled people.”

Davies said he believed the Welsh government had listened only to the local authorities on the advisory group.

He has been supported by the north-east branch of the Labour left-wing grassroots campaign Momentum and the Unite union in Wales.

But he said he was disappointed that Disability Wales – the national association of disabled people’s organisations in Wales – had not supported his campaign.

Miranda Evans, policy and programmes manager for Disability Wales (DW), said they were not able to support the petition – which is critical of the Labour party in Wales – because it was too party political.

But she stressed that DW’s preferred option was for a new Welsh independent living scheme – a Welsh version of ILF – that would protect those currently receiving WILG funding and would also be open to new members.

DNS has seen DW’s response to an early consultation on the Welsh government’s plans, and it makes it clear that none of DW’s members or the other disabled people it had consulted about the future of WILG were in favour of handing the funding directly to local authorities, and had instead “expressed strong opposition” to this.

It also stressed that such an option was “totally unacceptable to existing ILF recipients, their carers and other disabled people”.