Cross Party

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

Keep on keeping on

So, the Welsh Independent Living Grant (WILG) has been extended to March 2017. This is a reason for celebration and is the culmination of a lot of hard work by many people over the last 12 months to protect independent living for disabled people across Wales.

However, we cannot rest on our laurels and must start thinking about what we are going to do this time next year. We are still looking for a long-term solution to the problems that the Tories caused when they closed the Independent Living Fund (ILF) .

We also need to analyse the letter which was sent to Paul Swann at Disability Wales who acts as Secretary of the Cross Party Group on Disability. The full letter can be downloaded here:  Minister’s response to CPGD re ILFWILG.

As stated above, Mark Drakeford AM (Minister for Health and Social Services) has confirmed that the draft Welsh Government budget contains £27 million to enable WILG to continue until March 2017. However, it is clear from the letter that the current level of funding form the UK Government is only sufficient to maintain recipients’ payments at the same level as they previously received form the ILF. It does not cater for any changes in a person’s circumstances or any changes in the level of support they require. The Minister confirms that the funding provided by the UK Government does not include any funding in respect of administration costs.

The Minister does recognise that a long-term solution is required and he has confirmed that he hopes to be in a position to respond more fully with regard to the scheme within a month.

With an election on the horizon in Wales the Assembly Members will be preoccupied until May but this does not mean we can’t do our homework in building a strong case as to why we need a more lasting Welsh ILF system – similar to the ones that have been established in Scotland and Northern Ireland.

I intend on meeting my prospective AM and getting their commitment to safeguard independent living in writing, I’ll write to the Welsh national press to make this issue a political hot potato and in a change of tact I also hope to get back in touch with Ian Lucas, my local Labour MP, who has always represented me well in Westminster. I would like to ask him to press the Tories hard about the amount of money they give to the devolved governments to cover independent living. It is not good enough to simply pass on the same amount of money distributed in 2015 as this does not account for new claimants or changes in circumstances. As someone with a progressive disability, I fear that the time will come – sooner rather than later – when I won’t be able to pay for the hours of care needed for me to remain living independently in the community; The Tories must be challenged and stopped from pushing ahead with fascist plans that boil down to nothing less than systematic social cleansing.

Writing and campaigning is what I am good at. Back in December, I wrote a blog entry entitled Fighting for independent living in Wales in which I appealed for assistance from recipients of ILF in Scotland and Northern Ireland. I wanted their opinions and experiences on how their national ILF schemes functioned since the closure of the UK-wide ILF in the hope that it may prove an inspirational model for us to follow in Wales.

I received the following comment in response to my blog: 

Hi Nathan – My name is Charles Rainey and, in 2012, with my wife set up the ILF User Group NI, dedicated retaining the ILF in NI should Westminster decide to replace it. With the support of relevant charities and individual politicians we drove the decision to set up the current situation where users have basically noticed no difference going from one to the other. Send me an email and I can send you more details on our approach.

I sent an email to Mr Rainey and set up a telephone call in which I’d discovered that my new found friend from Northern Ireland had done wonders in setting up a User Group that actively lobbied for the retention of an ILF for Northern Ireland. Mr Rainey is an accountant by trade and deserves enormous credit for all his hard work in helping to create a stable future for disabled people in Northern Ireland. I wish that I could follow his inspirational lead, but I am just not cut out for all the paperwork and bureaucracy that is involved in establishing such a protest group. Therefore all I can do is appeal to any professionals with a conscience based in Wales to take up a similar challenge to Mr Rainey and help provide hope for disabled people nationwide.

On top of this I am also concerned about my own staffing situation. I currently have a vacancy for a personal assistant for 16 hours per week with every chance that this will lead to more hours. This is a great opportunity to work with a small team in a rewarding environment. Rates of pay are £7.26 (between 7am and 8pm) and £9.64 (between 8pm and 7am) and training opportunities are available. However, this position has been advertised for over 12 months with little response and even when I do receive applications from candidates and invite them for interview then I find they are far from suitable.

I believe this is a sign that we live in an increasingly uncaring society.

I guess this is a call for anyone in the Wrexham area, preferably female, with a caring attitude to read the following job advertisement and consider applying to become a member of my staff.

http://www.penderelstrust.org.uk/recruitmentDetailsPA.php?recruitment_id=5211

I don’t bite, honest.

 

National Assembly Cross Party Group on Disability

National Assembly Cross Party Group on Disability

11am – 1pm, Friday 16 October 2015

Maesgwyn Hall, Mold Road, Wrexham, LL11 2AF

Co-Chairs 

Mark Isherwood AM (items 1–3) & Aled Roberts AM (items 4–8)

AGENDA

11am  1. Welcome, introductions, apologies

11.05am 2. Minutes of last meeting (13 May 2015) and matters arising

11.15am 3. Implementation of the Social Services & Well-being (Wales) Act

11.15am i. Margaret Provis & Anthony Jordon, the Welsh Government’s view

11.25am ii. Mark Jones, Head of Service Physical, Sensory and Neurological Impairment and Mental Health – Adult Social Care, Wrexham County Borough Council, a local authority perspective

11.35am iii. Vin West, Parent Carer, Arfon Access Group – a perspective from the Citizens Panel

11.45am iv. Nathan Lee Davies, a service recipient’s perspective

12.05pm Q & A / discussion

12.20pm 4. Welsh Government’s Strategic Equality Objectives consultation – Isabel Mortimer, Fairer Futures Division

12.35pm 5. Welsh Independent Living Grant – Paul Swann, Disability Wales & Sheila Meadows OBE, Parent Carer

12.45pm 6. Disability Research on Independent Living and Learning (DRILL) – Rhian Davies, Disability Wales

12.50am 7. Annual Report

12.55am 8. AOB

13:00pm 9. Future meeting dates & themes, Meeting ends