Wrexham

Things Just Got A Little More Interesting #SaveWILG

I am in a foul mood today after being passed the following condescending letter by Lesley Griffiths AM written by the Minister for Children and Social Care, Huw Irranca-Davies AM.

Following the letter below, I have shared some of the responses I have received after sharing this letter amongst the rest of the #SaveWILG campaign team. Feel free to leave your feedback in the Comments Box at the foot of this blog entry.

I guess I am so upset at this letter because it seems that Huw Irranca-Davies did not take on board the enormity of what I had to say and he seems to have dismissed it as the inconsequential bleatings of a disabled man. This hurts deeply and, believe me, I will get absolutely no pleasure from saying “I told you so” when the Social Care system in Wales finally implodes due to the negligence of Welsh Labour.

So where do I go from here? Tomorrow, I have the official launch of the #SaveWILG art exhibition at Theatr Clwyd and on Saturday we have the Community Awareness Day at Set the Bar in Wrexham.  I will remain positive and keep up the fight because I believe that we are in the right and I am determined to be able to enjoy my life once more following these eight years of hostile uncertainty.

23rd January 2018

 

Dear Lesley

Thank you for your further letter of 21st December last year on behalf of your constituent, Mr Nathan Davies, regarding the Welsh Independent Living Grant (WILG),

You will recall I wrote to you on this on 14th November, soon after becoming Minister For Children and Social Care.  In that letter I responded to a number of issues relating to this decision that Mr Davies had raised, including providing a copy of the summary of the public consultation that was held and first published in March 2015.

While I appreciate the apprehension WILG recipients such as Mr Davies will have about how they are going to be supported in future, the decision to change the delivery of this to local authority social care was not taken lightly. Neither was it taken in isolation of the views of those who represent disabled people in Wales as some have claimed.  It was taken with the best interests of all disabled people in Wales in mind.  This is of ensuring that all disabled people receive the support they need to live independently at home in line with the ethos of our new social care legislation.  This is irrespective of whether they used to receive payments from the Independent Living Fund or not.

The continuation of the WILG would only have sought to reinforce the inadequate two-tier approach which currently exists to supporting disabled people in Wales, with some only receiving support from their local authority while some can receive this as well as dedicated payments from the WILG.

My kind regards,

Huw Irranca-Davies

***

Feedback from #SaveWILG Campaign Team

“It’s a shocking(ly awful) response from the Minister. Apart from a general attitude of ‘It’ll be OK, because I say it’ll be OK (but I’ve nothing to base that on)’, it fundamentally ignores the central issue that the councils can’t be trusted with this responsibility.  To say ‘…I appreciate the apprehension…’ but ‘we gave it some thought and decided to do it anyway’ is dodging everything.  Typical, I’m afraid, of a generation of politicians more interested in their own careers than supporting the people they represent.”

“Typical defensive political speak that ignores the issues and pretty much says there aren’t any. I don’t think we have a friend in HID, but we have plenty of others. At least we know how the land lies in that direction now.”

“What we have never managed to get over is we do not receive LA support plus WILG, we receive reduced LA support which is topped up by the WILG Payments.”

“I agree with all the above comments. HID doesn’t want to know and I’m sick of Welsh Labour just replicating everything the Tories do and expecting no resistance.”

“We should be looking at getting Labour councillors involved as the added work load to administer WILG will fall onto already overstretched councils.”

Falling Apart at the Seams

 Loads of things to let you know, but so little time.

First of all a little self promotion, as the following paragraph is from Ian Lucas MP’s monthly CLP report:

I have been working alongside Nathan Davies, a party member here in Wrexham, over the changes the Government has made to the Independent Living Fund. The debate included MPs from Northern Ireland, Scotland, and England as well as Welsh Labour colleagues Susan Elan Jones and Jessica Morden, and it was notable that each part of England criticised the changes the UK Government has made to the administration of the successor to ILF. I was able to pay tribute to the work Nathan has been doing – and to highlight his front page appearance in the Leader that morning. I was not particularly impressed with the Minister’s response, although I will take her up on her offer to meet to discuss my concerns. 

The following video accompanies this text:

Independent Living Debate with Ian Lucas

I think we have established how brilliant I am, but this awesome individual is also struggling at the moment with the effects of Friedrich’s Ataxia. This cruel disease is progressing quickly and really starting to affect my swallowing and speech. I have particular problems before food as I am regularly coughing and choking uncontrollably on my own saliva as I anticipate my food.

Another problem is with my speech. I am afraid that I am beginning to slur more than I use to and I just cant bear listening to myself on TV or radio as the voice that I hear is not the one that I hear in my head when speaking. I really should do something about both problems, but as I am so busy trying to save WILG, I am letting my health slide.

Earlier this week, I received a phone call from the local hospital asking me to come in for a camera down my throat following discussion with my GP about my difficulties choking. I chose to decline there kind offer as I am so busy with other things and cannot afford to lose my voice or become ill at the moment.

I received a newsletter from Ataxia UK today informing me of a speech and language therapy course that they are running in association with the University of Stirling. The second are all taking place through Skype so they are open to everyone. I really should take part and I would like to if only I had the luxury of time to spend looking after myself. The Tories and Wrexham council are ensuring that this is just not possible at the moment.

1Study Advert, Version 4.0, 05 January 2018

Speech Therapy Treatment Study for Friedreich’s Ataxia

Communication problems are a frequent consequence of ataxia. Many people report a decrease in quality of life as they can impact on our social relationships, employment opportunities, etc. Yet there currently is no effective treatment for speech problems that has been properly evaluated, and there is uncertainty amongst clinicians on how best to support people with ataxia with their communication.

We are looking for participants for a study investigating a new treatment approach for speech problems. There is good evidence that this approach is effective for Parkinson’s Disease and we  want to find out whether it can also help those with ataxia. This study is funded by Ataxia UK and aCHaf and carried out by researchers at Strathclyde University in Glasgow.

The treatment will be administered via Skype in your home and there is no need to attend a clinic. It will run for 8 weeks, with two therapy sessions per week and homework practice for the other days. A typical LSVT therapy session will involve practising a good voice production on a series of long ‘ahhhs’ focusing on controlling the loudness of your voice, as well as the pitch. We will then try and transfer these skills to speaking by reading out individual words and functional phrases, working our way up to longer stretches of speech over the course of therapy. As treatment will be carried out in English, it is important that you have Basic English speaking and reading skills. This protocol of activities will be the same for each session, but the materials will increase in complexity. Homework exercises will follow a similar protocol to the therapy sessions and will take about 30 minutes. Ideally, we would like you to practise at least another four times during the week.

We will measure how much your speech has changed after treatment, and also ask you what youthought of the therapy approach. To do this, we will perform two short assessments before and two after treatment, and also do an interview. This will again be done via Skype. Altogether, the study will take about 6 months.

To be able to take part, you need to fulfil the following criteria:
􀁸 Have a confirmed diagnosis of Friedreich’s Ataxia
􀁸 Experience speech or voice problems
􀁸 Not have any other neurological or speech problems
􀁸 Be aged 16 or over
􀁸 Have access to the necessary technology (good internet connection, access to a computer

that allows you to use Skype and has a functional microphone input)
􀁸 Have Basic English speaking and reading skills

If you are interested in participating, please get in touch with us by phone or email and we will give you more detailed information. Please contact:

Aisling Egan
Speech and Language Therapy Unit
School of Psychological Sciences and Health
Strathclyde University
Tel: 0141 548 4393
Email: aisling.egan@strath.ac.uk

I should probably email Aisling to find out more information.

I cannot end this blog without mentioning the two events that have on this week.  The first of which is a #SaveWILG Art exhibition at Theatr Clwyd in Mold, north Wales. This event runs from January 24th to February 12th and includes art, poetry and pictures from a wide range of disability activists and artists. The official media day for this is on February 2nd. I am very proud of what we have put together in such a short space of time.

A leaflet for the Theatr Clwyd event has also been produced by Heather Wilson.

SaveWILGSideA2

SaveWILGSideB2 copy

Our North-East Wales WLG/M comrades are centrally involved in organising this great event. It will be a fantastic occasion, but we need to get as many people there as possible! This is a day of entertainment and information. There is alcohol, soft drinks and food on sale at the venue and there is full Disabled access and a Disabled toilet.  The least we hope anyone can do is promote this event by sharing the flyer and printing it off and putting around your area, disability groups, CLPs etc etc. Raising awareness of the event is crucial to the campaign’s success!The event is FREE to all. Please do help in any way you can.

Schedule

 

Letter from Huw Irranca-Davies AM

I am sharing this letter from Huw Irranca-Davies  AM to Lesley Griffiths AM concerning my #SaveWILG campaign. There are many, many issues that I would like to pick up from this email, but I am biting my lip until we can arrange a meeting with my MP and Huw Irranca-Davies himself.

I hope this can be in one of the 24 days before Christmas, so that I can discuss my concerns and enjoy the festive break but I am not holding my breath and am preparing for my 8th consecutive Christmas of concern and worry over the future of Independent Living for disabled people in 21st century Britain.

Seasons Greetings…

***

Lesley Griffiths AM
Assembly Member for Wrexham
Lesley.Griffiths@assembly.wales

 

14- November 2017

Dear Lesley

Thank you for your letter to Rebecca Evans AM on behalf of your constituent, Mr Nathan Davies, outlining his ongoing concerns regarding the Welsh Independent Living Grant (WILG). I am replying as policy on social care in Wales now forms part of my Ministerial portfolio.

I have agreed to meet Mr Davies and his MP, Ian Lucas, and my Diary Secretary is arranging for this to take place as soon as is possible.

In relation to Mr Davies’ comments about Wrexham County Borough Council, my officials have been in contact with the authority to ascertain the latest position. I am aware that Wrexham initially had social worker vacancies which impacted upon its ability to undertake future support reviews of WILG recipients and reviews of those receiving social care more generally. This seems to have occurred in Mr Davies’ case.

Wrexham County Borough Council now informs us that it has recently recruited additional social workers to undertake reviews of those receiving social care from the authority, thereby releasing more experienced officers to undertake future support reviews of its WILG recipients. Recipients will be contacted individually by the authority to enter into a dialogue as to the wellbeing outcomes they wish to achieve to live independently and to agree the future support they require to achieve these. The authority intends to complete as many of these support reviews as possible within this financial year, with those not able to be completed by then as soon as possible in next financial year. Whenever a WILG recipient’s support review is completed, their payments under the WILG will not cease until a package of care to deliver the future support they require is in place.

One public consultation on the way in which former recipients of the Independent Living Fund should be supported in the future was held. This ran from October to December 2014 and asked for views on the principle of four potential options to provide support. A summary of the responses received and the conclusions reached was published in March 2015. Stakeholders, including recipients, were informed of this at the time and until recently this summary appeared on the Welsh Government’s website (only being removed as part of a wider updating of our website). I attach a copy of the consultation summary published in 2015 together with a copy of the information letter on this which officials sent to local authorities at the time for them to provide to recipients. I would be grateful if you would provide these to Mr Davies as part of your response to him.

As regards Direct Payments, I understand Wrexham County Borough Council currently operates around 200 such payments to adults to enable them to have control over the care and support they obtain to meet their wellbeing outcomes. The authority is not aware of any operational issues affecting the delivery of these, although accepts that some individuals experience difficulties with recruiting appropriate staff or with securing the care they need from support providers. To ensure their practice is current and appropriate, it has held discussions with officers from Flintshire County Council relating to a collaborative approach to delivering Direct Payments in the region.

If Mr Davies has specific concerns regarding his care package or his Direct Payments from the authority, I understand that Sheila Finnigan-Jones, Service Manager for Disability Services, is happy to meet him to discuss these. Her contact details are:

Tel: Wrexham (01978) XXXXXX E-mail: Sheila.finnigan-jones@wrexham.gov.uk

Huw lrranca-Davies AC/AM

Y Gweinidog Gofal Cymdeithasol a Phlant Minister for Children and Social Care

Letter from Rebecca Evans AM

Yesterday I received an email from Ian Lucas MP who shared the response to his letter to Rebecca Evans AM about my WILG campaign.  His letter can be read here.  The response he received can be read below and it is most disappointing.

Instead of being disheartened by this response, it has given me and my comrades extra impetus for the fight ahead.  There are so many points that Evans has made here that are just quite simply unfair and discriminatory.  It is time to ramp up the pressure on Evans and her cronies in Cardiff.  We can not stand by and let this happen in 21st century Britain.

I am overwhelmed with the support I am getting from the north Wales public and this is really appreciated as it gives me the strength to carry on with the fight for all WILG recipients – the majority of who I are not even aware that this fight is going on.

I could write pages in response to this letter, but I do not have the time at the moment.  My time is better spent on the struggle to achieve liberty and justice for the disabled community.

Here is the letter from Rebecca Evans AM:

25 August 2017

Dear Ian,

Thank you for your letter on behalf of your constituent, Nathan Lee Davies regarding the decision to provide support in future to former recipients of the Independent Living Fund (ILF) through local authorities’ social care.

Following the closure of the ILF in 2015 by the UK Government, we put in place interim arrangements with local authorities to ensure continuity of support for former recipients in Wales through our Welsh Independent Living Grant (WILG). This has worked well and I understand Mr Davies has been receiving payments from Wrexham County Borough Council under this to continue to help him meet the costs of living independently.

These arrangements were put in place while we considered how support in the longer term should be provided. To assist with that consideration a stakeholder advisory group was established. This had representation from the organisations which represent and act for disabled people in Wales (such as Disability Wales and the Dewis Centre for Independent Living), representation from local authorities and some recipients themselves.

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

In light of these issues the advisory group on balance favoured the option of future support being provided by local authorities as part of their social care provision. It did so because this option matched the future support former recipients would receive with that being provided generally to disabled and older people in Wales. This is in keeping with our person-centred ethos for social care being delivered through the Social Services and Well-being (Wales) Act 2014. This is similar to the ethos behind the original establishment of the ILF.

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

I accepted the stakeholder advisory group’s advice in full. I appreciate that Mr Davies and others who wished to see a different option chosen will be disappointed with the decision taken and will be apprehensive about the future. However, to ensure a smooth transition in recipients’ support, all local authorities were issued with detailed guidance. This covered how authorities were to prepare and undertake the care assessments necessary to identify what recipients need to continue to live independently. It also covered the resultant agreement of the future care package a person required and provided clear advice that a person’s payments under the WILG should not cease until that care package was in place.

As part of our monitoring of local authorities’ preparations for this transition, all authorities have recently confirmed that they have plans in place to implement this change, with the majority having commenced their care assessments. In a small number of cases recipients have already had these, agreed a future care package and have transferred to receiving their support from their local authority. Most authorities are, therefore, confident of completing the care assessments they need to undertake in 2017-18.

In the case of Wrexham I understand it has a plan in place to implement this change and that care assessments have begun. I am aware, however, that completion of this to time is dependent on the authority creating additional social worker capacity. I understand the authority has secured funding but has yet to fill vacancies. In view of this, officials are maintaining a watching brief on the situation.

In view of Mr Davies’ and your concerns I am happy to meet with both of you, and one or two other recipients, to discuss the implementation of this change further, although I do not intend to revisit the decision for the reasons outlined above. Would you please arrange for your office to contact my Diary Secretary, to agree a mutually convenient date for this. His contact details are:

Tel No. 03000 259461

E-mail: DS.MinSSandPH@gov.wales

Rebecca Evans AC/AM

Gweinidog Iechyd y Cyhoedd a Gwasanaethau Cymdeithasol

Minister for Social Services and Public Health

 

Support from Ian Lucas MP #SaveWILG

I am pleased with how the #SaveWILG campaign is going so far as I’ve had plenty of media coverage, a good response to my postcard campaign, solidarity and support from Welsh Labour Grassroots and now I have had support from Ian Lucas MP, totally justifying the efforts I made to help him get re-elected in June.  He has written to Rebecca Evans AM to voice his concerns over the closure of WILG and to ask for a meeting between her good-self and recipients.  I have copied the letter below with permission from Ian Lucas.

This has made me think… If other people could write to their local MP and highlight the worrying WILG situation, then any further letters like the one below will only serve to increase the pressure on the Welsh Government and make them think twice about their decision to close WILG.  This would be great wherever you live as a letter from an MP outside of Wales would be just as effective.  Thanks for your support.

Anyway, here is the letter from Ian Lucas:

Rebecca Evans AM
Minister for Social Services and Public Health
Welsh Government
5th Floor
Tŷ Hywel
Cardiff Bay
CF99 1NA

14 August 2017

Our Ref: ZA19750

Dear Rebecca,

I am writing on behalf of a constituent, Mr Nathan Lee Davies who recently contacted me regarding the Welsh Government proposal to transfer administration of the Independent Living Fund to local authorities.

Nathan is a beneficiary of the fund with whom both Lesley Griffiths and I have worked over a number of years on disability issues. Nathan suffers from Friedreich’s ataxia, a disease that causes progressive damage to the nervous system. We have participated together in consultation events on ILF and discussed the fund with other recipients at consultation events, some of which were organised by the Welsh Government.

I am acutely aware that the UK Government has passed responsibility for the difficult decisions relating to the future of the ILF to the Welsh Government and I do not envy you the decision you have been asked to make. However, I am very concerned indeed, having discussed the issue in depth with Nathan, at the decision to transfer administration of the scheme to local authorities.

Neither of us believe that our Council has either the capacity or expertise to carry out this function and this decision is causing real concern to Nathan and other recipients of the scheme.

I would be very grateful if you would agree to meet with Nathan, me and other recipients of the scheme to discuss their concerns.

I look forward to hearing from you.

Yours sincerely,

Ian Lucas MP

 

Wrexham DPAC #TrashTheTories

So its time for the final push. I will be going around the local village later to post Trash The Tories leaflets that I have left over from my protest in Wrexham town centre yesterday. GE17 has been an exciting time that has seen me invest a lot of money in DPAC materials – such as a banner and leaflets – and make many friends as we fight for a change of government. The campaign has allowed me to engage with the local community, meet comedy icon Steve Coogan and flood social media with #TrashTheTories literature.

All this has been done in the name of Wrexham DPAC which I hope will continue to grow and prosper long into the future, whatever the result on Thursday. I’m sorry to have to rush this blog entry but there is still time to convince people to #TrashTheTories and #VoteLabour.

Here are some of my highlights-

 

 

 

 

What Do I Do Now?

These are very frustrating times for me as I struggle to come to terms with the fact that I have become a writer who can no longer write.

Friedreich’s Ataxia has robbed me of many functions that most of us take for granted, but the deterioration of my dexterity and inability to type freely is the most heart breaking aspect of my progressive condition. I have tried voice recognition technology and Eyegaze systems, but found annoying time consuming glitches with both of these potential solutions that deem them unworkable.

My Occupational Therapist is trying hard to find a solution to this problem, but she can’t perform miracles and keeps hitting the same brick wall that has been impossible for me to hurdle since publishing Every Silver Lining has a Cloud in 2013.

A few weeks ago she came up with a great idea when in discussion with the company Remap – who are specialists in coming up with new technologies to help disabled people live independent lives – she was advised to encourage me to be featured in the next series of The Big Life Fix with Simon Reeve. This programme brings together some of the brightest brains in Britain to try and solve problems that are affecting the lives of individuals and communities across the country.

This just shows the scale of the problem that I face – it needs a specialist team of inventors to conjure up a bespoke design to suit my individual needs. Nevertheless, I decided this was to good an opportunity to miss and with the help of my PA’s I wrote the following application:

 
I would like to register my interest in being featured in the next series of the Big Life Fix with Simon Reeve. 

I am a 40 year-old male who lives in Wrexham, north Wales with a progressive genetic disease known as Friedreich’s Ataxia.  I use a wheelchair for mobility purposes and I am an author and disability activist. 

My condition has deteriorated quickly since I published my first book in 2013.  I would like to write another book but I am having trouble with my dexterity and find it difficult to write.  it can take me up to 15 minutes to write a simple Tweet.  It is very frustrating to feel trapped in your own body. 

I have to rely on my PA support to help me type lengthy emails such as this by dictating my thoughts.  This is the best solution I can find at the moment as I have tried Voice Recognition Technology, but as my voice changes throughout the day – becoming increasingly slurred as I get tired – the programme does not recognise my voice.  I have also tried Eyegaze Technology but found problems when trying to use this software.  I found that I would be quicker trying to write by myself and also had problems with the light reflecting off my glasses. 

This is a scary time for me as I currently receive 86.5 hours of care and support per week but in these times of austerity this is likely to come under pressure following the recent announcement that the Welsh Independent Living Grant (WILG) is due to close in April 2019.  For further details about this please see the link below:

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

Subsequently, my support is under threat at the time when my progressive condition means that I need more assistance.  At the moment I am left alone between 14:00 and 19:00 which is  extremely frustrating.  Not only am I unable to type but I am also unable to communicate on the telephone due to my poor hearing and slurred speech.  I am also unable to go out of the house during these periods as I find it impossible to use the toilet on my own or access my wallet. 

I could dictate much more, but I feel you now have a basic understanding of the problems that I face every single day as I struggle to fulfil my potential and live life as I choose.

I watched the first series of the Big Life Fix and was very impressed.  It would be a dream come true to appear on the programme and for the team of inventors to help find a life changing solution to my specific needs by tailoring technology to suit me in a world where technology seems to be hindering and not helping me – for example I can not use touch screen technology due to my dexterity. 

I look forward to hearing from you soon. 

Many thanks

Nathan Lee Davies

After composing this email I was fairly confident that I would receive a positive response and daydreamed about appearing on national TV, forgetting that I am a left wing activist with a vocal dislike of the BBC and status quo in general. Subsequently, it can be no real surprise that I received the following email yesterday afternoon:

Hi there,

Thank you so much for applying for this series of BBC Two’s Big Life Fix.

Unfortunately, we will not be progressing further with your application at this stage, but if anything changes then we will of course get back in contact with you.

We would love to keep your details on file here at Studio Lambert so we can get back in contact with you should we come back for another series, or if there are any other shows we make that we think you might be interested in.

If you would like for us to remove your details, please let us know by replying to this email.

Very best wishes,

The Big Life Fix Casting Team.

I am now disappointed and without hope for the future. I will keep plodding on and dictating my words of frustration to my support staff while remembering that there is always someone worse off than me. I will keep fighting and do what I can to rid this land of the Tories and give disadvantaged people such as myself the opportunity to progress and thrive in a more balanced and progressive society.