UN Convention

Minutes of the Cross Party Group on Disability #SaveWILG

Minutes of the Cross Party Group on Disability

Friday, 11th January 2019, Wrexham Glyndŵr University,

Mold Road, Wrexham, LL11 2AW

Present: Carol Gardener, Jo Woodward, Tom Hall, Mark Davies, Eric Owen, Sorrel Taylor, Maureen Lee, Sharon O’Connor, Chris Roberts, Jayne Goodrick, Paul Johnson, Lynne Jones, Lynne Davies, Nathan Davies, Sandra Morgan, Bill Fawcett, Vince West, Laura Seddon, Lisa Pollard, Simon Green, Michelle Brown AM, Eluned Plack, Eluned’s carer, Jacqui Hurst, Kathryn Shaw, Brian Harrison, Rhian Davies, Martyn Jones, Zoe Richards, Mark Isherwood AM, Gareth Davies, Rebecca Phillips.

Apologies: Llyr Grufydd AM, Jan Thomas, Helen Mary Jones AM, Rob Williams, Kathryn Jellings, Andrea Wayman, Stephen Ben Morris, Louise (WCD), Owen Williams, Glenn Page.

1. Welcome and introductions

Mark Isherwood AM welcomed everyone to the meeting.

2. Minutes of the last meeting.

The minutes were approved as an accurate record.

3. Presentations:

Rhian Davies – Draft Framework for Action on Disability

Rhian provided an overview of the Welsh Government’s Draft Framework for Action on Disability. The document was created following a review of the Framework for Action on Independent Living, produced in 2013 to provide a strategic approach to independent living across Wales and to promote the social model of disability.

Disability Wales strongly believe that the Framework for Action on Disability should be under-pinned by the UN Convention on the Rights of Disabled People. Disability Wales worked with its partners in Scotland and Northern Ireland to produce a Manifesto for independent living and identified six calls to action:

1. Improved access to information, advice, independent advocacy and peer support services.

2. Availability of accessible and supported housing to meet individual requirements.

3. A comprehensive range of options and genuine choice and control in how social care and support is delivered.

4. Improved access to person-centered technology.

5. Barrier-free transport system that includes all forms of transport.

6. Enabling access, involvement and social economic and cultural inclusion of all disabled people.

There was a ministerial agreement to review the Framework for Action on Independent Living, three years on. This resulted in the Independent Living Steering group, comprising representatives from disability organisations across Wales, chaired by Rhian, to re-convene. The group reflected on what had been achieved since 2013. They recognised that whilst the introduction of the Framework was ground-breaking, progress on the ground was very slow and that national policy set by Welsh Government had not translated into local action. There was limited evidence in the change in culture, particularly by local authorities and local health boards in terms of taking on board a more rights-based approach to disabled people and to tackling barriers to independent living.

This was endorsed in 2017 during a Welsh Government consultation. The general feedback was that very little had changed in the lives of many disabled people and has even got worse which was also a key finding from the UN Convention on the Rights of Disabled People. The UN Committee in Geneva was very critical of the UK Government in that they had regressed in their local policies.

The steering group’s aspirations for the revised version is that it should be much stronger in terms of the UN Convention of the Rights of Disabled People. The Convention should be at the heart of the new Framework with a stronger commitment to implementation of the social model of disability and more robust action in terms of how that is understood by people.

Rhian reported that the steering group took a strategic decision to align it with Welsh Government’s own strategic plan, ‘Prosperity for All’ which has four key themes:

1. Prosperous and secure

2. Healthy and active

3. Ambitious and learning

4. United and connected

The steering group was of the opinion that there should be two documents. The main document, to set out the key commitments and principles for Welsh Government to abide by, plus a separate action plan that could be regularly updated and monitored with more specific detail about what different the Welsh Government departments would do in terms of delivery.

The action plan, which is currently out for consultation, links more closely to the articles of the UN Convention. In order to produce a response to the consultation, Disability Wales ran two events along with an online survey to gather the views of disabled people. The deadline for responses is Friday 18th January but there could be an extension. Rhian added that Alison Tarrant from Cardiff University has produced an interesting paper looking at independent living policy. The paper was circulated to members prior to the meeting. The paper critiques the Framework for Action on Disability and a number of issues were identified.

Disability Wales and other members of the steering group have been calling for incorporation into the UN Convention for the Rights of Disabled People (UCRDP), giving it similar status to that of the UN Convention on the Rights of the Child. Helen Mary-Jones AM is looking at how human rights can be incorporated in Wales.

Rhian noted that there is a disconnect between Welsh Government’s principles and aspirations in relation to improving independent living for disabled people and the actual reality of accessing services and achieving their rights.

Rhian highlighted the importance of the CPGD submitting a robust response to the consultation with the aim of strengthening the new Framework to ensure it takes forward the rights of disabled people in Wales.

MI highlighted some of the findings from the study based on the Draft Framework for Action on Disability produced by Alison Tarrant of Cardiff University. These included the absence of ‘Advocacy’, which was previously identified in the 2013 Framework as one of the highest priorities. In addition, the 2013 Framework was constructed around a series of priorities identified by disabled people. The foregrounding of the priorities and expertise of disabled people has been removed. MI suggested these be considered when submitting a response.

Nathan Davies – Wales Independent Living Grant

Nathan shared a video with the group, titled ‘Save WILG Campaign’. The video highlighted the issues faced by more than 1300 recipients of the grant. On March 31st, Welsh Government plan to close the Welsh Independent Living Grant (WILG) and transfer the funds to the Local Authorities. The funds will not be ring-fenced. The video, features an insight into Nathan’s condition, Friedreich Ataxia, a progressive disease of the nervous system. Nathan states that in order to be a productive member of society, he requires the help and support from personal assistants, funded by WILG. Without the grant, his care will be reduced from 86.5 hours per week to 31 hours per week. Back in April 2018, at the Welsh Labour Conference, a motion was passed to save WILG. However, this has not been acted upon yet. The Campaign has gathered political support from across the spectrum and still Welsh Ministers and some civil servants refuse to listen to the evidence collected. Nathan is particularly concerned that the money being given to Local Authorities has not been ring-fenced.

Nathan’s strength and campaigning has been recognised by the Wrexham Glyndwr University who have made him an honorary fellow.

To highlight the issues surrounding WILG, Nathan is running a series of campaigns across social media to influence a positive decision.

Mark Isherwood AM invited questions and comments.

Questions / Comments:

In relation to WILG, Rhian informed the group that Nathan and the BBC made a Freedom of Information request. It emerged that only two-thirds of people have been assessed and although some had their packages maintained and some increased, a significant number had their hours cut. There were circa 17 instances of clients taking legal action against their local authority. In response to the Freedom of Information outcome, Huw Irranca-Davies AM agreed to examine this further to establish whether the issues solely related to Wrexham or whether the problem was more widespread. Rhian suggested the CPGD write to the new Minister, Julie Morgan AM for an update.

The importance of disabled people needed better access to lawyers was raised.

Mark Isherwood AM stated that the Equality and Human Rights Commission will occasionally fight a trial case to establish a precedent. The CPGD could submit a request if there was a particular matter that needed to be tested in court. He added that Welsh Government do not have control over Legal Aid but it is still worth highlighting any concerns and to ask what support they can offer to better access legal advice.

Various sources of legal services were identified and will be circulated following the meeting. Disability Wales also have a guide on their website offering advice and information called ‘Know Your Rights, Use Your Rights, Live Your Rights’.

Concerns were raised around the lack of proper planning and services available for the increasing number of children with disabilities which will result in their needs not being met.

A member asked why Welsh Government has decided not to follow Scotland or Northern Ireland in terms of how they manage the Welsh Independent Living Grant if there is evidence to prove the system is working well in those areas.

Mark Isherwood AM suggested Disability Wales seek data from Disability Scotland to identifying the positive impact the grant has had on recipients of the grant.

The Chair welcomed further comments from the floor. Learning Disability Wales gave an update their work. In December Learning Disability Wales held its first ministerial advisory group meeting, chaired by Gwenda Thomas AM. The main focus was the Children’s Commissioner’s ‘Dont Hold Back’ report, investigating children and young people’s experience of transition across various policy areas. Martyn also informed members that Welsh Local Government Association (WLGA) has been consulting on a document around commissioning services and are looking to hold a national conference around it. Public Health Wales are working with LDW on a conference on reducing restrictive practice with the Education Minister. The Equality and Human Rights Committee are about to start a piece of work around access to courts to support disabled people to fully engage in the system.

Rhian added that Disability Wales are working with Women’s Aid to establish the accessibility of refuges. A survey has been produced and will be circulated. The results will be compiled soon and asked whether it would be an opportunity hold a joint meeting with the Party Group on Violence against Women and Children to share the findings.

Mark Isherwood AM welcomed a joint meeting with the Cross Party Group on Domestic Violence.

Date of the next meeting:

Zoe Richards will circulate the date of the next meeting, to be held in Cardiff.

Actions:

1. CPGD to produce a response to the Framework for Action on Disability consultation document and seek an extension to the deadline of the 31st January.

2. Zoe to share the link to Nathan Davies’ campaign video to members.

3. CPGD to write to Julie Morgan to summarise concerns and seek an update in relation to the issues identified following the Freedom of Information request.

4. Disability Wales to seek data from Disability Scotland to support the evidence around the positive impact of WILG on Scottish recipients.

5. Circulate an email requesting responses to the consultation.

6. Circulate Women’s Aid and Disability Wales’ survey

Closure of the Welsh Independent Living Grant: In the cause of equality of provision for disabled people? #SaveWILG

The following article was written by Ann James and Luke Clements. It appears on their superbly informative website which can be viewed here.

We would like to thank Ann and Luke for their research and work in putting together such a comprehensive report.

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Local authorities in Wales are rushing to meet the new September deadline, set by the
Minister for Health, for the re-assessment of the 1,300 or more recipients of the Welsh
Independent Living Grant (WILG). In November 2016 the Welsh Government (following in the footsteps of the English Government) announced the closure of the WILG.

The transfer of care and support of all recipients to local authority provision has been
contentious and has left many recipients anxious and fearful that their right to Independent Living will be eroded by this decision. A strident campaign has been launched by recipients of the WILG (and the previous Independent Living Fund (ILF)) and their families and supporters under the campaign banner of #SWILG.

Closure of the Wales Independent Living Grant

The Independent Living Fund (ILF) was established by the Department of Health and
Social Security in 1988 as an independent trust to provide a weekly payment to a
small number of severely disabled people who would have suffered very significant
financial loss as a result of the abolition of supplementary benefits ‘additional
requirements’ payments in that year.4 It is however thought that about one million
disabled people experienced considerable losses as a result of the 1988 changes.

The ILF existed in various forms until it was closed by the Department for Works and
Pensions to new applications in December 2010,  at which time it was providing support
to 46,000 people with complex needs to live in the in the community.7 At that time the UK
Government argued that it was an unsustainable cost; that it perpetuated an unfair funding of services to disabled people; that distribution of ILF was inconsistent across the four nations and within the four nations; and that the advent of direct payments and individual budgets in England obviated the need for ILF.8 The ILF closed in June 2015 and the funding was devolved to English local authorities and the Scottish, Welsh and Northern Irish Governments

The WILG was set up in 2015 following a consultation exercise and gave the Welsh
Government a period of moratorium to decide on how to proceed
.
The options before the Minister were:

• the extension of current arrangements;
• an arrangement with a third party to continue to provide payments to recipients in
Wales, and;
• to transfer the responsibility and funding to local authorities in Wales over a two-year
transitional period so as to eventually provide support through nIn November 2016, it was announced that the WILG would close in March 2019 and that all recipients would be assessed by their Local Authority for care and support under the Social Services and Well-being (Wales) Act (SSWBA) 2014 by March 2018. The March deadline was extended to–September 2018 to enable local authorities to complete their assessments of WILG recipients.

The #SaveWILG campaigning group led by Nathan Davies continue to fight a vigorous campaign to persuade Welsh Government to retain the WILG and grow the provision in a similar fashion to Scotland.

The Equality Impact Assessment (EIA) carried out in advance of the closure decision in Wales conveys a Panglossian view, that is to say an overly optimistic view of what the 2014 Act will deliver following the closure of the WILG in 2019.  It also fails to acknowledge and consider the potential adverse effect on individuals who may have significant changes to provision and how this will be addressed to ensure the recipients right to Independent Living.

The rational for the closure of the WILG is in keeping with the UK Government’s arguments for the closure of the ILF. Welsh Government argues that:

  • the continuation of the WILG will perpetuate a ‘two tier’ system of provision and that this is unfair on those who receive care and support solely through their local authority.
  • the cost of maintaining a Welsh version of the Independent Living Fund is financially unsustainable as money devolved to Wales from the UK Government’s closure does not have the capacity to respond to future need of recipients nor allow for the opening of the WILG to new applicants.
  • the SSWBA 2014 and Direct Payment provision will enable and support independent living and that the need for a discrete fund is not required.

 

Transition from the WILG to local authority provision: are there messages from England?

The analysis and studies of the impact of the closure on ILF in England are bound to give concern to WILG recipients in Wales. The Shakespeare and Porter 2016 study, which focused on the impact of the transition from ILF to local authority support, found high levels of concern and anxiety about Local Authority processes and provision during this period. The Department of Work and Pensions Post-Closure Review,found both positive and negative experiences of the transition. Those who had retained their provision or had an increase in provision or a slight reduction reported satisfaction without any loss to their independence. For those who had experienced a significant reduction there was a loss of independence, greater restrictions to their independence and an increased reliance on unpaid carers. There was also a concomitant impact on the emotional and physical health of these participants.

An emerging theme from the research and reviews is the post-code lottery faced by previous recipients of ILF. The finding in Inclusion London’s  review confirmed this factor and found in addition inconsistent practice in relation to NHS Continuing Health Care (NHS CHC) referrals for funding and failings in the implementation of the Care Act 2014 which left services users without essential provision.

Many disabled people who will be transiting from the WILG will be legally eligible for NHS CHC funding or at least NHS joint funding. In addition to the well-documented procedural hurdles they encounter in obtaining this support, in Wales a more troubling challenge exists.  The Welsh Government has made it clear that it will not permit direct payments to be made for people eligible for NHS CHC (unlike in England such payments can be made.  Many LHBs appear reluctant to facilitate direct payments via a trust arrangement (often referred to as an Independent User Trust (IUT)) even though the High Court has held this to be lawful (indeed necessary in certain situations).

Anecdotally it is also reported that LHBs are placing obstacles in direct payments being made where there is a joint funding arrangement even though the Framework guidance makes it clear that where ‘an individual has existing Direct Payment arrangements, these should continue wherever and for as long as possible within a tailored joint package of care’.

 

Concluding Comments

About 1,300 people will transfer from the WILG to local authority care and support under the SSWBA 2014 by March 2019. Many of the recipients and their carers are concerned that their right to Independent Living will be compromised as local authorities re-assess and establish their eligibility to services.

The R (CWR) v Flintshire County Council (2018) Case Note illustrates the challenges that a disabled person and his/her family can face in Wales as they seek to access care and support. This case note does however, highlight the statutory requirements for a comprehensive assessment of disabled people in need of care and support and their carers. It demonstrates too, that assessments undertaken in a cavalier manner can be challenged and local authorities held accountable for their assessment, determination of eligibility and care provision. This may provide some reassurance to WILG recipients although it is perhaps questionable how many will have the energy, knowledge and courage to pursue this option.

While the term ‘well-being’ may be used in a perfunctory manner in discussion about social care, the definition in section 2 SSWBA 2014 is comprehensive and includes control over day to day life (s.2(4) (a)) and participation in work (s.2(4)(b)).

Clements notes that section 6(3)(b) stresses ‘the importance of promoting the adult’s independence where possible’ and argues that this is amplified and bolstered by para 56 of the Part 2 Code of Practice (General Function) which states that the well-being duty ‘includes key aspects of independent living as expressed in the UN Convention on the Rights of Disabled People in particular Article 19 which recognizes the right of disabled people to ‘full inclusion and participation in the community’; to choose where they live and with whom they live; and to have access to a range of community support services ‘to support living and inclusion in the community, and to prevent isolation or segregation from the community’. Assessment, eligibility determinations and decisions on how to meet need will need to be infused by these principles.

R (JF) v. Merton LBC highlighted the requirement for an assessment to have regard to the dimensions of well-being set out in stature.

A comprehensive overview of assessment, eligibility and meeting needs can be found at www.lukeclements.co.uk/wp-content/uploads/2017/11/Wales-SS-Well-being-Act-26.pdf page 9.

This ‘post’, written by Ann James and Luke Clements, appears in Rhydian: Wales Social Welfare Law on-line (2018) 23-26: to access this click here.

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Disability Wales Press Release

PRESS RELEASE

FOR IMMEDIATE DISSEMINATION

Open letter to oppose Government’s disability benefit cuts

Ahead of next week’s Budget, Disability Wales are supporting a UK wide call for the Government to reconsider planned cuts to the Work Related Activity Group (WRAG) of the disability benefit Employment Support Allowance (ESA), which will see new claimants lose out on £30-a-week, £1500 a year.

Wales has a higher proportion of disabled people than the rest of the UK with a greater proportion of disabled people also living in poverty.

The UK Government claims this cut to ESA will ‘incentivise’ disabled people to get in to work, despite a recent Work and Pensions Select Committee report highlighting that evidence towards this is ‘ambiguous at best’. Disability Wales argues that instead of halving the disability employment gap, the cuts will directly undermine this aim pushing disabled people closer to or into poverty, with a survey of over 500 disabled people finding:

* Almost 7 in 10 (69%) say cuts to ESA will cause their health to suffer

* More than a quarter (28%) say they sometimes can’t afford to eat on the current amount they receive from ESA

* Almost half (45%) of respondents say that the cut would probably mean they would return to work later

* Just 1% said the cut would motivate them to get a job sooner

A recent Disability Wales survey highlighted the desperate struggle of many disabled people dealing with the stress of a system that continues to obstruct and not support. We will be calling upon Welsh Government to put pressure on UK Government to reverse the policies of further cuts.

Rhian Davies, Chief Executive of Disability Wales said:

“The UK Government has been heavily criticised by the UN Committee on the Rights of Persons with Disabilities for breaching the rights of disabled people through its ongoing programme of austerity and welfare reform.  To continue to target disabled people with further cuts is beyond comprehension or humanity.

Poverty, poor housing, lack of access to transport, local services, education and skills training means that the odds are stacked up high against disabled people seeking employment. Increasing insecurity and distress by cutting income will do nothing but bring more harm to disabled people in Wales.”

Disability Wales will be taking evidence to the UN Committee on the Rights of Persons with Disabilities on March 13th which will demonstrate how the UK Government is continuing to fail disabled people in Wales and across the UK. The delegation will lobby for recommendations to be made to UK and Welsh Governments to take action to reverse the impact of these severe attacks on the rights of disabled people.

Open letter

“Dear Prime Minister,

“We urge the Government to reconsider the £30-a-week cut to Employment and Support Allowance (ESA) and Universal Credit facing sick and disabled people. The cut has caused deep concern among the sector and unease among MPs from all parties and we remain united as a sector in our opposition.

“The cut to new claimants in the Work-Related Activity Group of ESA and within Universal Credit (UC) from 1st April 2017 will affect many people found currently ‘unfit for work’ but will also impact many disabled people in work and on low wages due to the way UC works.

“Almost 70% of sick and disabled people surveyed said this cut would cause their health to suffer and just under half said they would probably not be able to return to work as quickly, therefore undermining the Government’s attempts to halve the disability employment gap – something we wholeheartedly support.

At a time when 1 in 3 households with a disabled member are living in poverty, £30 a week can be a huge loss in income. We therefore urge the Government to halt this cut immediately.”

Notes to editors:

1. Disability Wales is the national association of disabled people’s organisations in Wales championing the rights, equality and independence of all disabled people.

2. The Disability Wales response to the “Improving Lives: Work, Health and Disability” Green Paper highlights the detrimental impact of welfare reform on disabled people seeking work and accessing benefits such as Employment Support Allowance. It can be accessed here: http://www.disabilitywales.org/wordpress/wp-content/uploads/FINAL-Disability-Wales-response-to-Improving-Lives-Green-Paper.docx

3. The UN Committee on the Rights of Persons with Disabilities investigation throughout 2017 will assess what steps the UK has taken to implement the UN Convention on the Rights of Persons with Disabilities. The Committee is a body of experts, nominated and elected by governments, the majority of whom are disabled people.

4. The committee postponed its assessment of the UK (originally due in 2015) to investigate a complaint of the violation disabled people’s rights as a result of welfare reform. This was brought under the optional protocol of the Convention. That investigation looked only at a part of the UN Convention – with a particular focus on the impact of austerity measures and welfare reform. The current report looks at a much wider set of issues, including our laws on mental health and mental capacity, policies on employment and education and more.

5. For media enquiries, please contact:

Natasha Hirst on 029 2088 7325 or via Natasha.hirst@disabilitywales.org