Ian Lucas MP

Letter from Huw Irranca-Davies AM #SaveWILG

I have received the following letter from Huw Irranca-Davies AM, Minister for Children and Social Care following our meeting last month.

I was disappointed with my performance at the meeting and now I am disappointed with the letter that the Minister has sent. It is the sort of letter we’d expect to get from a government minister; it appears detailed and thorough, but it seems to avoid the reality on the ground.

I also need to properly formulate my argument into five key points that I would like to ask the Minister to avoid him trailing off and talking about general issues. I will do this later this afternoon. I had hoped that by listening to me talk about the problems disabled people would be facing in dealing with local authorities only, that Huw Irranca-Davies would have responded with a more positive and original letter full of hope and pragmatic free thinking. Unfortunately, I received the following:

Dear Nathan

Thank you for meeting me to discuss the Welsh Independent Living Grant (WILG) and for sharing your experiences and concerns. It is important to me to see how the decisions we make as a government are translating into delivery for people on the ground. As we discussed, I am writing in response to some of the points which were raised, and to give you an update on further actions.

At our meeting you explained that you thought there had been separate public consultations held in 2014 – one for recipients and the third sector, and another for local authorities on the principle of four potential options for future support arrangements for former recipients of the Independent Living Fund (ILF). I would like to assure you this was not the case. Only one consultation was held with all the responses considered together.

You also raised the issue of accessibility of the consultation for recipients. To address this issue various versions of the consultation were produced including a Welsh language version, a braille version, easy-read and easy-to-read version. The latter versions were produced with assistance from the RNIB and Learning Disability Wales. I understand from my officials that a large number of the easy-read and easy-to-read versions were issued where recipients and their families felt these would aid their understanding of the consultation.

On the substantive issue of a scheme to succeed the ILF, you asked why the option of a Welsh Independent Living Scheme put forward by Stephen Harris of the Dewis Centre for Independent Living was not considered further, as you believed this option received most support from respondents. However, as the consultation summary indicates, the most supported option was in fact the potential for arrangements in Wales similar to that of the ILF. As Shiela may recollect as a member of the stakeholder group who advised Welsh Government, when the detail of how a resulting shortlist of options could be implemented that option was indeed considered further.

However, the Welsh Independent Living Scheme option did not make that shortlist for several reasons. While on the face of it the scheme would adhere to the principles behind the establishment of the ILF, many opposed it as the funding would not go to the individual but to their local authority to fund the cost of their care package. The only way under this option that recipients could continue to have control over the support payments they received would be through direct payments from their local authority. In addition many were concerned that the increased numbers of disabled people in Wales, who local authorities could claim funding for from the scheme, would result in the threshold to access this system having to be set at a very high level in order to make the scheme affordable. This was in light of the fixed, finite funding the UK Government transferred to the Welsh Government to fund the support of former recipients of the ILF. This could have had the potential to reduce the funding the scheme could provide to authorities in individual cases. In view of these concerns Ministers at the time concluded it was not suitable to pursue this option further.

It is important to emphasise that the decisions taken in consultation with the stakeholder group have at all times sought to ensure people with disabilities in Wales have the right to live independently at home and are supported to do so. As a government we have acted to underpin this in legislation through our Social Services and Well-being (Wales) Act 2014. The Act is changing the way people are supported to give them more voice and control over the care and support they require to meet their own wellbeing outcomes. It is encouraging to see increasing evidence of this approach becoming standard practice across Wales to the benefit of those who rely on support, and with a positive effect on the future support packages which are being agreed for WILG recipients.

We also discussed the monitoring of the two year transition period, where I confirmed we collect periodic data from local authorities on their progress. As of November last year over 350 recipients in Wales, of the 1,300 recipients in total, were already in the process of agreeing their future support package with their authority, with over 30 having now decided to transfer to receiving their support through their support package. While this is positive, I agree we need to widen this monitoring to also collect qualitative data on the outcomes which WILG recipients are experiencing, and I am currently considering ways in which this could be done. In addition I am acutely aware if we are to support recipients to live independent lives, authorities need an appropriate amount of time to undertake reviews with them and for recipients to have time to agree their future support packages do this. As a result I am also considering whether there is a need to adjust the transition to allow authorities more time to complete these reviews given the numbers involved and the fact that a large number of recipients have complex care needs.

Finally, you raised several concerns about the approach of Wrexham County Borough Council to care assessments and to the transition process for recipients of the WILG to local authority support. In the light of your concerns my officials will seek direct assurances from the local authority over its implementation of the transition process and its reviews of recipients’ future support needs.

I will write to you again with a progress update on the transition to the new support payments, including any potential changes for the transition and the monitoring of the transition, and response to your concerns over local implementation. In the meantime I am copying this letter for information to both Ian Lucas MP and Sheila Meadows, and I thank you again for taking the time to meet me and discuss these important matters.

Huw Irranca-Davies AC/AM
Y Gweinidog Gofal Cymdeithasol a Phlant
Minister for Children and Social Care

***

I WILL BE RESPONDING TO THIS LETTER OVER THE NEXT FEW WEEKS. MY RESPONCE WILL BE PUBLISHED ON THIS BLOG IN FULL.

MY MOVE…

 

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

 

Links and updates

his is a busy time for me, so I would like to keep you up to date with my recent activities by sharing a few links with you that show the pressures that I have been under and the local celebrity status I have been creating for myself 🙂

Blue Badge Petition

Independent Living Debate with Ian Lucas

Daily Post Feature

The Leader

I am also looking forward to the following two events which I am busy trying to organise. 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.

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. Some of our comrades are performing, but we would love to hear back from you or anyone you know how is in any way creative and/or a performer. Please do get in contact with either Vic Grout (vic.grout@glyndwr.ac.uk) or Louise Bosanquet (louise.bosanquet@hotmail.co.uk) if you would like to perform or know someone who would. 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!

 

Minutes of meeting with Huw Irranca-Davies #SaveWILG

The following notes where typed up by Sheila Meadows OBE following are meeting with Huw Irranca-Davies  last week. As time goes on, I regret not saying certain things and holding him accountable for his party’s failings over the past few years. This is why I am trying to set up another meeting in Cardiff with the honourable gentlemen.

Anyway, good or bad, these are the minutes from our meeting:

18/01/18

#SaveWILG meeting

Present: Mathew Hall (Civil Servant Policy Division), Ruth Parness (PA Ministers Private Office), Huw Irranca-Davies, Ian Lucas MP, Nathan Lee Davies, Sheila Meadows OBE, Tia Louise Wills

Notes taken by  Sheila Meadows OBE

Nathan Lee Davies (NLD) opened the meeting explaining it has been a long, hard campaign since 2010 and particularly since 2015 with the closure of ILF and the beginning of WILG

A Social Worker visited NLD in 2015 and informed him that without WILG the council would be looking to reduce his hours of support. NLD explained he had a progressive condition and requires additional support not less. He explained his fears for the future.

NLD described his involvement in the community and states his campaign is formed from a desire to help all WILG recipients have positive outcomes.

NLD feels targeted by Wrexham Council as a disabled person (Social Care cuts/Blue Badge issues) and is frightened of the future. NLD explained the need for an independent third party that can fulfil the role of ILF in providing information and support in dealing with the council to give uniformity across councils.

NLD requested that the minister take this opportunity to achieve something better for disabled people, not just WILG recipients.

Huw Irranca-Davies (HID) discussed the history of the consultation process, Steve Harris’s 4th option and was given notes sent by Steve and the Wrexham consultation notes. He accepted there had never been complete agreement in the stakeholder group but was clear he wanted every penny of the £27 million to go to the care of former ILF recipients to maintain their independent living. HID is also aware of the problems facing disabled people in England.

HID was clear that he had no intention of changing policy, but was also clear that he expected LAs to be assessing fairly to meet needs. Under the SSWBA, ALL people should be supported to achieve the outcomes they require for their mental and physical health.

Ian Lucas (IL) pointed out that when an urgent letter was sent to Wrexham council in November, far from supporting recipients by making contact and reducing anxiety as requested they had merely filed it. He has no confidence that Wrexham LA will come forward to produce a process or plan for meeting the high level of needs of this group of disabled people.

There was a wide discussion on how and who takes responsibility when a LA does not, or cannot meet the requirements of the WG.

NLD explained how he felt during initial discussions with his social worker last month. She laughed when he suggested he needed 24-hour care and knew the panel would reject such a request out of hand. NLD feels far from working with him to meet his needs, he is seen as an inconvenient nuisance by Wrexham council.

HID and Matthew Hall (MH) confirmed the policy was not to reduce the support people have but to meet their needs to continue to live in the community.

MH has agreed to send a follow up letter to NLD and Sheila Meadows (SM) once he has spoken with HID – who has now left the meeting. NLD and SM also reinforced the loss of the knowledgeable and supportive body we had in ILF and MH agreed to consider how to ensure an LA who is not performing well will be forced/supported to move forward.

SM closed the meeting with a quote by Gwenda Thomas: “It is no longer good enough that they do things differently – we must do different things.”

The Campaign Continues… #SaveWILG

Life is hectic at the moment.  I have just had a meeting with Huw Irranca-Davies to discuss the future of the Welsh Independent Living Grant.  This was probably the most important meeting of my life and others present – including Ian Lucas MP – said I performed well, but as always I am my own worst critic and I feel that I should have pushed things further.  We were limited to time and I had to loads that I could not say so I am proposing another meeting in Cardiff if this guarantees us a longer meeting to discuss all the essential details.

The talk seemed to be more about how the Welsh Government could get local authorities – such as the hapless one in Wrexham – to fulfil their legal obligations in a more efficient manner.  I kept pointing out that this was not good enough as it would still leave us without representation from an external, third-party body that is independent in nature.  This is the bottom line of what we want and I will continue to campaign until we get it, although I am not holding  my breath as we search for humility and humanity within the Welsh Government.

I am overloaded with things to do as next Wednesday is the opening of the #SaveWILG art exhibition at Theatr Clwyd in Mold, North Wales.  The official media day for this is on February 2nd while on February 3rd we have a community awareness day for the #SaveWILG campaign.  We have managed to line up lots of exciting entertainment and a really good day is in store.  We hope to see you there 🙂

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. Some of our comrades are performing, but we would love to hear back from you or anyone you know how is in any way creative and/or a performer. Please do get in contact with either Vic Grout (vic.grout@glyndwr.ac.uk) or Louise Bosanquet (louise.bosanquet@hotmail.co.uk) if you would like to perform or know someone who would. 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!

Letter from Ian Lucas MP

I received this letter from my MP Ian Lucas who has been extremely supportive of my #SaveWILG campaign. He was trying to find out information about how the closure of the Independent Living Fund (ILF) has affected disabled people. He wanted me to see the response he received – printed below – from Sarah Newton MP, Minister for Disabled People, Health and Work as it looks as if the Government is shifting responsibility for ILF  to local authorities who will now carry the can.

Thank you to Ian for his continued support. Together we will fight for justice for all disabled people against an obviously heartless Government…

Dear Ian

Thank you for your email of 2 November to my predecessor concerning the Post Closure Review of the Independent Living Fund (ILF).

As you are aware, the responsibility for the ILF has been devolved to local authorities. Central Government does not monitor individual authorities’ assessment of need. At the point of closure of the ILF, 94 per cent of users were also receiving support from local authorities. This duplication of support indicated that there would be a rationalisation of awards , therefore, it was expected that some awards would be reduced to rectify this.

The aim of the post closure review was to provide a qualitative assessment of the experiences of the closure of the ILF in England, as perceived by its former recipients and local authority staff within adult social services department.

This qualitative research comprised in-depth interviews with 50 former ILF users. The ILF closed in 2015 and the interviews took place between August and September 2016, therefore providing a more accurate idea of the immediate impact of ILF closure on recipients. Conducting research of this type is challenging. Many ILF users have mobility or communication difficulties or are vulnerable, which means that interviews are time consuming and can only be conducted by specially trained interviewers.

The Department fulfilled its obligations by publishing the findings of the interviews, but we would not publish the individual interviews themselves for Data Protection reasons.

We have also published the equality analysis that was conducted prior to the closure of the ILF, which can be accessed using the following link: https://www.gov.uk/government/publications/closure-of-the-independent­ living-fund-equality-analysis

I can assure you that the Department is not seeking to withhold information on present payments to former ILF recipients. As indicated in the answer to your recent Parliamentary Question, the Department does not in fact hold this information. I suggest that you seek the information from individual local authorities.

Sarah Newton MP

Minister for Disabled People, Health and Work

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