Welsh Government

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.

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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

    Get Involved: Send an Email to Leadership Candidates #SaveWILG

    I am asking all my loyal readers and comrades to spare 3 minutes of their time and send the following postcard picture and message to the 3 Welsh Labour leadership candidates, plus other important figures who will be able to influence Welsh Government thinking with regard to the Welsh Independent Living Grant.

    The email can be copied and pasted from below. It should include an inline image of the postcard to maximise impact. The end of WILG is imminent and we MUST keep up the pressure and show those in power that we are not going anywhere. We will continue to protest and defend the rights of disabled people with high care and support needs across Wales.

    Help us do this by sending the email below. Thanks, as ever, for your support.

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    SUBJECT: Save the Welsh Independent Living Grant (#SaveWILG) 
     
    Message to Mark Drakeford AM, Eluned Morgan AM, Vaughan Gething AM (Delete as appropriate
     
    This is a crucial time for the future of Social Care in Wales. The SSWBA is an excellent piece of legislation, but it will take many years to come to fruition. 
     
    In the meantime, WILG recipients will be at the mercy of local authorities who are unprepared for this Act and are already threatening substantial cuts in the care and support services that recipients need to function as a part of their local communities.
     
    We are calling on the Welsh Government to reconsider the decision to end WILG as of April 2019 and fully explore the alternative options while listening to recipients and party members who voted overwhelmingly for a motion to save WILG  at the Welsh Labour conference in April 2018.
     
    Our campaign to save WILG  has won cross party support, two motions have been passed, a number of MP’s and AM’s have lent their support including Jeremy Corbyn and John McDonnell. We have also had the backing of Unions and celebrities such as Ken Loach who all agree that the Freedom of Information work that we have done provides glaring evidence that disabled people with high care and support needs require and are entitled to third party support from an independent body.

    The 3 candidates can be emailed at the following addresses:

    Mark Drakeford AM: Mark.Drakeford@assembly.wales

    Eluned Morgan AM: Eluned.Morgan@assembly.wales

    Vaughan Gething AM: Vaughan.Gething@gov.wales

    While you are at it the same message could also be sent to the Minister for Older People, Children and Social Care Huw Irranca-Davies who is currently responsible for WILG. He can be contacted at Huw.Irranca-Davies@assembly.wales

    It is also important that we continue to put pressure on the Petitions Committee who need to realise that NOW is the time to write a report on WILG to help preserve disabled peoples rights in Wales and force the Welsh Government to take the necessary steps and #SaveWILG.

    David Rowlands: DavidJ.Rowlands@assembly.wales

    Janet Finch Saunders: Janet.Finch-Saunders@Assembly.Wales

    Mike Hedges: Mike.Hedges@assembly.wales

    Rhun Ap Iopwerth: rhun.apiorwerth@assembly.wales

    Neil McEvoy: Neil.McEvoy@assembly.wales

    Any help and support you can give would be much appreciated. Together we can make a difference…

    Disability News Service: Ministers ‘failing to uphold a UN disability convention they do not understand’

    The following article was taken from the excellent Disability News Service website, written by John Pring.  This blogger takes no credit for the article below:

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    Government ministers are failing to uphold the rights of disabled people, ignoring the need to engage with disabled people’s organisations, and do not understand the UN’s disability convention, according to a new report.

    The highly-critical report has been compiled by disabled people’s organisations (DPOs) across the UK and submitted to the UN’s committee on the rights of persons with disabilities.

    It analyses how the UK and devolved governments have responded to key parts of last year’s highly-critical report by the committee on the UK’s progress in implementing the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

    The new report includes some criticism of the devolved governments of Scotland and Wales – and raises concerns about the impact of the continuing political impasse over the Northern Ireland Executive – but most of its concerns are directed at the UK government in Westminster.

    The UK government, the report says, is responsible for “continuing retrogression and re-institutionalisation” of disabled people and continues to disagree with the UN committee’s findings and recommendations.

    It adds: “We have concerns that the UNCRPD is not embedded within government and is poorly understood at all levels, including ministerial.”

    It provides the example of international development secretary Penny Mordaunt, who appeared to try to redefine the meaning of inclusive education at the government’s Global Disability Summit in July, telling the international audience that inclusive education meant “that everyone has an education and it is done in a way to reach their full potential”.

    The report says that many of the concerns raised by DPOs last year in their evidence to the UN committee remained a “significant problem”, with disabled people still subject to “tightening eligibility” for support, the removal and sanctioning of benefits and the bedroom tax.

    It also raises concerns about the continuing rollout of universal credit (UC) and says DPOs are “gravely concerned” at the failure to assess the access needs of disabled people due to be moved onto UC and the lack of the necessary data to monitor its impact.

    It warns that the social care funding crisis has led to the removal of further essential independent living support for disabled people and the closure of community services for people with mental distress, while increasing social care charges are leaving thousands of disabled people in debt or choosing to pull out of receiving support completely.

    The DPOs also point to the chronic shortage of accessible housing in England, with new housing for disabled people often limited to segregated supported housing complexes.

    And the report says that the number of disabled children being forced into special schools is rising, while budget cuts are reducing the quality of inclusive education, and the number of disabled pupils left without any educational placement at all has risen, as has the number of disabled pupils excluded from school.

    Among the DPOs that contributed to the report are the Alliance for Inclusive EducationDisability Action (Northern Ireland)Disabled People Against CutsDisability WalesInclusion LondonInclusion Scotland, the Reclaiming Our Futures Alliance and Sisters of Frida.

    They make 22 recommendations of their own that are aimed at the UK government, including calling for: a new legal right to independent living; the abolition of charging for social care; an end to the practice of placing disabled children and young people in long-stay hospitals; and a new social security system that is based on “an accurate analysis of need” and is “consistent with a human rights approach to disability”.

    There are also four recommendations for the Welsh government – including a call to incorporate the UNCRPD into Welsh law – and six for the Scottish government, including the need for a national strategy on the provision of accessible housing.

    The DPOs conclude that examples of “progressive” policy-making have been restricted to the devolved governments of Scotland and Wales, although the two executives are “not without room for improvement” themselves.

    There is also repeated criticism in the report of the UK government’s “inadequate engagement” with DPOs and its failure to recognise the importance of consulting disabled people.

    The report says that “engagement with non-user-led charities is continuously prioritised over engagement with DPOs”, while requests by DPOs to meet ministers “are frequently turned down”.

    It also says that engagement with the UK government is “undermined by an increasing lack of trust”, and warns that “without trust, consultation and engagement cannot take place in ‘good faith’”.

    The report does welcome one measure taken by the UK government, the increased funding for disabled facilities grants, although it warns that “delays in processing applications can still be a problem for under-resourced local authorities”.

    This week’s report follows the publication of the government’s own progress report last month.

    The DPO report is highly critical of the government’s progress report, accusing it of effectively ignoring many of the UN committee’s recommendations.

    One of the recommendations ignored, it says, was to carry out a cumulative impact assessment (CIA) of its cuts and reforms on disabled people, with the UK government continuing to insist that this is not possible.

    It points out that the Equality and Human Rights Commission (EHRC) published a CIA earlier this year, while the Greater London Assembly is conducting its own CIA for London “using the same methodology as the EHRC”, and both the Scottish and Welsh governments are “exploring carrying out their own”.

    There is also frustration at the government’s failure to follow up the UN committee’s recommendation that it should devise a “comprehensive” plan aimed at the “deinstitutionalisation” of disabled people, in “close collaboration” with DPOs.

    Welsh government’s ‘ludicrous’ failure on independent living framework

    The following article was taken from the excellent Disability News Service website, written by John Pring.  This blogger takes no credit for the article below:

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    The Welsh government has been criticised for a “ludicrous” and “insulting” failure to address the adult social care funding crisis in a new draft framework on independent living.

    Action on Disability, its new draft framework and action plan, was put out to consultation this week, and aims to “develop and improve access to help, advice and services for disabled people in Wales”.

    The plan will eventually replace the Welsh government’s 2013 framework for action on independent living and follows a series of meetings and engagement events with disabled people, disability organisations and other stakeholders.

    The report says that this public engagement process saw concerns raised about “cuts to social care provision” which had led to “lower allocations” of direct payments, leaving disabled people “increasingly isolated, and the impacts to their wellbeing compromised”.

    But despite these concerns, the action plan refers only to previous strategies on services for visually-impaired people, Deaf and autistic people and those with learning difficulties, and fails to include any measures to address the cuts to support and the social care funding crisis.

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

    Of 44 actions supposedly aimed at improving the right to independent living in the new action plan, not one of them explicitly addresses the need to improve the overall access to care and support, although it does promise a review of the aids and adaptations system that supports disabled and older people to live independently in their own homes.

    Instead, the action plan covers areas including disability employment, higher education – including a planned review of policy on disabled students’ allowance – public appointments, and access to public transport.

    There is also no mention of social care in the section describing the Welsh government’s “commitments” on independent living, even though it promises to “work for continuous improvement” on how it fulfils its obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

    The failure of the action plan to suggest any measures to address the funding crisis and cuts to support suggests the Welsh government is in breach of the convention’s article 19, which says that governments signed up to UNCRPD should take “effective and appropriate measures” to enable disabled people to live in the community with “full inclusion and participation”.

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

    Because of the WILG closure, Welsh local authorities will be solely responsible for meeting the support needs of all former ILF-recipients by 31 March 2019.

    Nathan Lee Davies (pictured), who is leading the campaign to persuade the Welsh government to overturn its decision to scrap WILG, said the failure to address social care in the action plan was “ludicrous” and “insulting”.

    He said: “They seem like a load of ostriches burying their heads in the sand. It’s just really worrying.

    “I am disillusioned but far from surprised. It just seems like they are copying what the Tories have done in Westminster, with the same devaluing of disabled people.”

    He suggested that the Welsh Labour government had simply published a “flimsy” framework document in order to “placate the UN, and to be able to say, ‘look, we are doing something to support disabled people’”.

    He said that ministers – by closing the WILG – were “washing their hands” of responsibility for social care and handing it to local councils, which could not afford to meet their responsibilities promised under the Social Services and Well-being (Wales) Act 2014, which Davies said should be renamed the Pie in the Sky Act.

    Responding to criticisms of the document, a Welsh government official said: “Our ‘Action on Disability: the Right to Independent Living’ framework is a high-level plan covering a wide range of issues in line with our national strategy, Prosperity for All.

    “A number of the actions in this draft action plan relate to social care; nevertheless we are open to suggestions on how the plan could be strengthened.

    “We encourage everyone to contribute to the consultation – which we launched this week – to influence our future work to support disabled people as best we can.”

    Davies has contrasted the actions of the Welsh Labour government with those of the UK Labour party, whose leader, Jeremy Corbyn, has publicly supported his campaign to save the WILG, as did members of Welsh Labour at their annual conference earlier this year.

    Davies is determined to persuade the Welsh government to keep the current system, which allows former ILF-recipients some security by receiving funding from three different “pots”: WILG, local authorities and their own personal contributions.

    He said that this “tripartite” system had provided the support he needed that led to him being recognised with an honorary degree by Wrexham Glyndwr University for his services to disability rights.

    He has also been involved with Wrexham football club, Disabled People Against Cuts, and the Care and Social Services Inspectorate Wales, as well as writing a new book, and running his campaign and a blog.

    He also worked with Disability Arts Cymru on a #SaveWILG exhibition of visual art and poetry earlier this year.

    Davies is now waiting to hear what will happen to his support package when WILG closes.

    Progress on Disability Rights in the United Kingdom #SaveWILG

    Yesterday, I was alerted to the publication of UK Independent mechanism update report to the UN Committee on the Rights of Persons with Disabilities.

    This is a very illuminating document that shows just how far behind the United Kingdom is slipping in terms of Disability Rights. The sections about Independent Living is of particular interest to me and my comrades as it is critical of the current arrangements that we are having to put up with. It provides yet more evidence of the need to save WILG as well as some worrying news that the Welsh Government are rushing through a new framework on Independent Living for disabled people that is bound to be a huge disappointment to those with high care and support needs. Welsh Labour have proved time and again that they do not want to listen to party members, unions, Labour MP’s, supporters from across the political spectrum or some of their own politicians and are determined to stop WILG.

    I am doing everything I can but I am not being listened to at all.  I have been robbed of three years of my life and the effect of this campaign has taken a huge toll on my health.

    I will carry on the fight until the bitter end because I believe in what I am fighting for and have no confidence in the Welsh Government – as it stands – to produce a suitable alternative.

    The fight continues…

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    The section on Wales, reads as follows:

    Wales –

    The EHRC is concerned that disabled people’s right to independent living may be harmed by the Welsh Government’s decision to potentially merge the Supporting People programme with other budget lines from 2020. Concerns have been raised that disabled people’s rights have been negatively affected when equivalent funding programmes elsewhere in the UK have been lost. 

    The report goes on to say the following:

    Wales

    The Welsh Government has prioritised social care in budget allocations to local
    authorities since 2010, most recently through a local government settlement to
    maintain the assumed Welsh Government share of core spending at 2017/18 levels
    until 2020. The Welsh Government also provides funding that supports social care
    duties through the Supporting People programme. This support helps people to live
    independently in their own home. The programme has been retained for a further
    two years as part of the budget for 2018/19. The programme’s future post-2019 is
    unclear, with the Welsh Government potentially merging it with nine other budget
    lines, with no ring fencing, causing concern for disabled people. A £60 million
    integrated care fund has been introduced, which aims to support people to maintain their independence and remain in their own home. However, there has been a real terms reduction in budgets for social care services of over 12% due to increasing need.

    The Welsh Government is currently reviewing its Framework for Action on
    Independent Living. After a delay, it is anticipated that the new framework, provisionally entitled ‘Action on disability: The right to independent living’, will now be published in autumn 2018. The new framework will be accompanied by an action plan that will set out a range of actions aimed at tackling some of the key barriers identified by disabled people, including in transport, employment and housing, and access to buildings and public spaces.

    I am looking forward to seeing what this new framework for action actually entails. I am preparing to be disappointed as  I always am with shambolic Welsh Labour.

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    The full report on the Right to Independent Living can be seen below:

    2. The right to live independently in the community (article 19)

    CRPD Committee concluding observations 2017, paragraph 45:

    ‘The Committee recommends that the State party … : recognise the right to living
    independently and being included in the community as a subjective right,
    recognise the enforce ability of all its elements, and adopt rights-based policies,
    regulations and guidelines to ensure implementation; conduct periodic
    assessments in close consultation with organisations of persons with disabilities
    to address and prevent the negative effects of policy reforms through sufficiently
    funded and appropriate strategies in the area of social support and living
    independently; … [and] allocate sufficient resources to ensure that support
    services are available, accessible, affordable, acceptable, adaptable and are
    sensitive to different living conditions for all persons with disabilities in urban and
    rural areas.’

    Summary of progress

    There has been limited progress on the UK governments’ implementation of the
    CRPD Committee’s recommendations concerning disabled people’s right to live
    independently in the community. Appropriate social care packages and accessible
    housing are two of the cornerstones of independent living. There have been some
    promising developments in Scotland and Wales in relation to certain funding streams
    to support independent living. However, as set out below, there is also evidence that
    social care, particularly adult social care, is at crisis point across the UK and there is
    a chronic shortage of accessible homes.

    Progress on disability rights in the United Kingdom 

    Key concerns

    UK

    The right to live independently in the community is not recognised as a statutory right
    in the UK and there do not appear to be any plans to change this.
    The increasing demand, along with reduced funding, for social care, particularly adult
    social care, may be leading to a regression in disabled people’s article 19 rights to
    live independently in the community. The shortage of accessible and adaptable
    homes, and long delays in making existing homes accessible, also has a detrimental
    effect on the right to live independently.

    England

    The EHRC is concerned that, in England, the closure of the Independent Living Fund
    and the devolution of this function to local authorities, without ring-fencing finance for
    this purpose, has resulted in a postcode lottery for support.

    Wales

    The EHRC is concerned that disabled people’s right to independent living may be
    harmed by the Welsh Government’s decision to potentially merge the Supporting
    People programme with other budget lines from 2020.
    Concerns have been raised that disabled people’s rights have been negatively
    affected when equivalent funding programmes elsewhere in the UK have been lost.

    Northern Ireland

    The Mental Capacity Act (Northern Ireland) 2016, while enacted, continues to have
    no clear time frame for its commencement.

    In Northern Ireland, the Independent Living Fund is administered by the Independent
    Living Fund Scotland, but restricted to existing users leading to its eventual defacto
    closure, and with no clear indication of future arrangements.

    Scotland

    Despite positive policy intentions, significant questions remain regarding the
    implementation of Self-directed Support and access to adult social care.

    New evidence

    Great Britain

    The EHRC’s inquiry into housing for disabled people across Great Britain (GB),
    published in May 2018, found that disabled people face a shortage of accessible and
    adaptable homes and long delays in making existing homes accessible. Disabled
    people are not getting the support they need to live independently as the provision of
    advice, support and advocacy is patchy, and people report that they have nowhere
    to turn when their housing is unsuitable. The EHRC’s survey of local authorities
    found that just over a quarter (28%) of local authorities in GB set a percentage target
    for accessible housing.

     In England, only 7% of homes offer minimal accessibility features.

     In Scotland, 55% of councils said a lack of funding for adaptations was a
    challenge, and only 24% said the data they hold about disabled people’s
    housing requirements were ‘good’ or ‘very good’.

     In Wales, only 5% of local authorities have a target in place for accessible
    housing, and only 15% said that disabled people’s housing needs are subject
    to specific discussion or scrutiny when conducting a local housing market
    assessment.

    Progress on disability rights in the United Kingdom

    England
    Spending for adult social care in England was budgeted to be 3% lower in 2017/18
    than in 2009/10. As the population has grown over this period, this is equivalent to
    9% lower per person, according to the Association of Directors of Adult Social
    Services (ADASS). This means ‘fewer older and disabled people with more complex
    care and support needs getting less long-term care’.

    In March 2018, the EHRC started legal action against 13 clinical commissioning
    groups because their NHS Continuing Healthcare policies restricted funding and
    failed to account for individual circumstances. This may force disabled people into
    residential care when their preference is to remain at home.

    Research by the Care Quality Commission (CQC) found that nearly two-thirds of placements in residential-based mental health rehabilitation services are ‘out of area’, and very lengthy. This means that individuals are usually placed far away both from home and from the local support services that should care for them once they have been discharged. The CQC has also reported that some patients who are subject to the Mental Health Act (MHA) 1983 continue to experience care that does not fully protect their rights or ensure their well-being. For example, there have been no improvements in involving patients in developing their care plans, and in making sure their views are considered in care decisions.

    Northern Ireland
    There is an absence of information on the extent to which disabled people with
    substantive needs, who are not existing Independent Living Fund users, are having their needs met through the Self-directed Support and direct payment provisions. Furthermore, direct payments do not fund many of the activities funded by the
    Independent Living Fund, leading to less support and control.

    Indicator 42 of the draft ‘programme for government’ considers the average life
    satisfaction score of disabled people. The Department for Communities has
    acknowledged that the comprehensive dis-aggregated data required to support
    indicator 42 is lacking. The department has conducted a scoping study to identify
    existing data, which recommended that a new Northern Ireland disability survey is
    required. The department is exploring options for such a survey, but, due to the
    additional resources required to conduct the survey, ministerial approval is required.
    With the continued suspension of the Northern Ireland devolved government, it is
    currently not possible to obtain the required approval.

    Relevant steps taken by UK governments

    England

    Since 2015, the UK Government has allocated additional funding to local authorities
    for adult social care through the adult social care precept, the Better Care Fund
    and a commitment to fund an adult social care support grant. However,
    stakeholders, including ADASS, conclude that even these recent increases may not
    be enough to address the funding crisis in adult social care.

    In March 2017, the Conservative Government announced a green paper on social
    care in England, and a public consultation. The publication of the green paper, which
    will focus on older people, has been delayed until the end of 2018. It is unclear whether it will address issues that are faced by working-age disabled people in
    relation to social care, and whether disabled people will be explicitly consulted.

    England and Wales

    The independent review of the MHA 1983 published its interim report in May 2018,
    providing details of the issues the review is examining.These include the rising
    rates of people being detained under the act and inappropriate and/or long-term
    placement of people with learning disabilities and/or autism in psychiatric hospitals
    because community support services are unable to meet their needs. The EHRC
    hopes that the review will make recommendations that result in fewer people facing
    compulsory detention and more people living independently in places or with people
    of their choosing.

    Wales

    The Welsh Government has prioritised social care in budget allocations to local
    authorities since 2010, most recently through a local government settlement to
    maintain the assumed Welsh Government share of core spending at 2017/18 levels
    until 2020. The Welsh Government also provides funding that supports social care
    duties through the Supporting People programme. This support helps people to live
    independently in their own home. The programme has been retained for a further
    two years as part of the budget for 2018/19. The programme’s future post-2019 is
    unclear, with the Welsh Government potentially merging it with nine other budget
    lines, with no ring fencing, causing concern for disabled people. A £60 million
    integrated care fund has been introduced, which aims to support people to maintain
    their independence and remain in their own home. However, there has been a real
    terms reduction in budgets for social care services of over 12% due to increasing
    need.

    The Welsh Government is currently reviewing its Framework for Action on
    Independent Living. After a delay, it is anticipated that the new framework provisionally entitled ‘Action on disability: The right to independent living’, will now be
    published in autumn 2018. The new framework will be accompanied by an action
    plan that will set out a range of actions aimed at tackling some of the key barriers
    identified by disabled people, including in transport, employment and housing, and
    access to buildings and public spaces.

    Northern Ireland

    The draft programme for government indicator 42 includes a commitment to
    increase take-up of Self-directed Support and direct payments. However, a final plan
    has yet to be approved in the absence of a functioning Northern Ireland Executive.
    Concerns have been raised that Self-directed Support does not suit everyone, that
    too much control is given to the health trusts, and that the support given is not
    enough to be used for more than the individual recipient’s basic needs.

    In the absence of an approved programme for government, the Northern Ireland
    Executive Office has developed a 2018/19 outcomes delivery plan that reflects the
    responsibilities placed on departments by the previous NI Assembly and Northern
    Ireland Executive, and sets out actions that the departments can take without further
    ministerial approval. Outcomes 8 (care and help for those in need) and 9 (a shared,
    welcoming and confident society that respects diversity) include a commitment to
    improve quality of life for disabled people. The identified actions for fulfilling these
    outcomes include ensuring that 8% of new social homes are wheelchair accessible,
    introducing opportunities for 200 new NI athletes in the Special Olympics, and
    improving understanding of British Sign Language and Irish Sign Language.
    Progress will be measured every six months, using a number of indicators set out in
    the draft programme for government, including indicator 42. Questions have been
    raised in particular regarding the plans for new accessible social homes and whether
    an 8% target for new accessible social homes is reflective of demand. It has also
    been questioned whether the new accessible social homes will be provided in a way
    that addresses the demand in rural and urban areas.

    Scotland

    The Scottish Government has announced funding for 31 projects delivering direct
    and local independent support across 31 local authority areas, through the Support
    in the Right Direction 2021 programme. Funding will be provided between October
    2018 and March 2021, with the aim of ensuring that more people across Scotland
    who require social care are empowered to make choices about their support.

    The Scottish Government has confirmed that by 1 April 2019 it will extend free
    personal care to all those under the age of 65 who require it, regardless of their
    condition.

    Letter from David J Rowlands, AM #SaveWILG

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

     8 August 2018 

     

    Dear colleague, 

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

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

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

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

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

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

     Additional information: 

    Why we oppose this decision: 

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

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

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

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

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

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

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

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

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

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

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

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

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

     Yours sincerely 

     David J Rowlands AM Chair 

     

     

    Mind Games

    My mind is cluttered up at the moment as the need to Save WILG increases and my disability continues to progress. Throughout all this I am surrounded by some amazing friends and comrades who really keep me going, yet still I remain intrinsically lonely.

    This is not meant to be a self centred, depressing blog. I am just stating my feelings on a sleepy Sunday morning. Hopefully others will be able to relate to my story and it is in this spirit that I am writing.

    After enjoying an evening watching the superb Joe Solo at The Sun Inn, Llangollen. This award-winning musician, writer, poet, activist, broadcaster and washing machine engineer hails from Scarborough. His musical odyssey began in 1987 fronting a bash-em-out band at school, and has seen him play seven countries either as lynchpin of pop-punk upstarts Lithium Joe or hammering out his unique brand of Folk, Punk and Blues in his own right.

    He put on a wonderful sincere show that obviously came straight from the heart and he managed to spread his passion for politics throughout the packed pub.  As he was performing I couldn’t help but wish I had remembered to bring a #SaveWILG postcard for him to pose with. I had to compromise and took a photo of Joe and I after the gig so that I could show that he was a supporter of the campaign.

    Then I saw the photo…

    At the beginning of the evening I chose to wear my new New York City t-shirt in homage to John Lennon. Unfortunately, I do not resemble the former Beatle in any way whatsoever so could only be disappointed with a photograph of a chunky bloke slouching in a wheelchair with a recognisable t-shirt hiding his flab. I was disappointed with the picture. Joe looked great and we captured the busy pub behind us, but the shot was ruined by me. I guess this is what happens when you are a perfectionist trapped in a imperfect body.

    john_600x

    I think the problem is not that I am especially overweight. I recently got weighed and was pleased to find that I was only 13st. This is about average for someone of my age and height. The main issue that I have is my posture in my wheelchair as due to Friedreichs Ataxia my hips tend to roll forward causing me to slouch down to a uncomfortable position. My spine is of no use at all as I am suffering from Scoliosis which means my spine has a sideways curve.

    I guess this is one of the hard things of living with Friedreichs Ataxia – it is constantly changing due to its progressive nature and I am always having to come to terms with accepting changes to my body. At a time when I am fighting the Welsh Government, Wrexham Council and Wrexham AFC this is particularly hard to cope with.

    However, I am a fighter and I will continue to fight while trying to learn to ignore media perceptions of what is beautiful and accepting that I should really love myself.

    I really should spend longer writing this blog, but I just do not have the time to explore my feelings in a deeper way. Tomorrow afternoon I have a meeting with Wrexham Council that I need to prepare for plus countless emails I need to write without any comfort eating…

    The fight continues.

    ***

    After watching Joe Solo, my own creativity was sparked into life again and when I got home I wrote the following Tanka while lying in bed.

    Sepia stained youth

     Running free through fields of gold

    Stranded in the past

    As your whole body erodes

    Revealed in digital form