House of Commons

Raffle

It wasn’t planned or anything. Promise.

Last night I attended An Evening with Mark Drakeford – a Clwyd South CLP event in Llangollen.

About this Event

An opportunity to meet Welsh Labour leader Mark Drakeford in Llangollen.

There will be an introduction from local AM Ken Skates and your £10 ticket includes a light buffet. There will also be a bar and a raffle with a range of prizes to be won.

 

The First Minister spoke brilliantly at this event about the forthcoming EU elections, the rise of the far right and the achievements of Welsh Labour.   One of the four Welsh Labour candidates in the forthcoming EU elections – Mary Wimbury – also roused the audience and explained why she needed their support. It was also good to catch up with Ken Skates AM, who I used to work with at North Wales Newspapers, and Susan Elan Jones MP who supported me throughout the campaign.

The personal highlight of the evening though came with the drawing of the raffle. I had bought two strips of tickets and was fortunate enough to have one of my numbers plucked from the hat by the First Minister himself at the start of the draw. I therefore had my choice of all the prizes on offer and chose a bottle of whiskey from the House of Commons which can be seen below.

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This is something I will enjoy once I have finished my WILG reassessment and all former ILF recipients in Wales are happy with the support they are receiving…

This will certainly be a good reason to raise a glass to the efforts of this proudly socialist Welsh Government.

Nightmare on Finney Close

When I told my Social Worker that I was in need of 24/7 care in my own home, she actually laughed at the prospect of anyone in my local authority receiving such a level of care and support. Read the following paragraphs and you might discover why I NEED round the clock assistance to function as part of my community.

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22.00: I was struggling to stay awake as I finished off my latest email to the Welsh Government, something that I knew in my heart of hearts would probably be ignored again. The #SaveWILG campaign has come so far and achieved a great deal, but still those in control refuse to listen and take note to Welsh citizens. The fight continues, but it would have to wait until the morning because I could hardly keep my eyes open…

22.45: Comfortably in bed, I watched the news on television and caught up with the latest chapter in the Brexit escapade. I am pretty confident that I could do a better job than the majority of politicians braying in the House of Commons. The success I have made out of the #SaveWILG campaign proves this, although as always I get by with a little help from my friends…

00.00: I am watching Porridge on Yesterday yet again, as I am too scared to go to sleep as I know I will probably wake up again in an uncomfortable position. This has happened far too frequently over the last 6 months and I have had to call my dad to straighten my legs, re position me in bed and rescue the duvet which often falls to the floor as I wriggle and fight to get comfortable. Hopefully, if Fletcher and company can keep me awake a little longer, I will be out for the count until the crack of dawn.

02.50: I’ve been asleep since about 00.30 but being awaken by massive cramp in my knees as my legs have bent during sleep. It is most painful and I just want to fully straighten my legs, but I can’t. After much effort, I managed to free my legs from my groin area and get them into a 45 degree angle which is as much as I can muster. In doing so I have managed to slide down the bed and my pillow has fallen on the floor. I shut my eyes determined to sleep some more as I can’t call my dad again…

04.36: I wake up again. My legs are in agony. I check the time on my mobile and hope it is 06.00 or 07.00 so that I don’t have to wait too long for my staff to come in at 09.00. I look at mobile and am shocked to see that it is only 04.40. There is nothing I can do, but call my dad. This is far from ideal as he has arthritis in both hands and is in agony whenever he is having to assist me but those at WCBC do not care about my dignity or the dignity of my carers. It is freezing outside and my dad finds his way to my house – a five minute drive away – in perilous conditions. It takes him about 20 minutes to reach my house where he proceeds to straighten my legs, re position me in the bed and give me some paracetamol, which I swallow with water. I hope this medication will send me to sleep and I hope I wont be woken until my PA arrives in the morning.

07.00: Not again. I’m awake this time because my bladder is full. I reach for the light switch but my dad has moved it and forgotten to replace it – something that can be forgiven at 5 in the morning. It is still pitch black, but I really need to use my urinal. The trouble is I can’t see at all. I manage to sit up and grab hold of the urinal, but it is a real struggle to get it in the right position. I am too far gone to be able to calm myself down and resist the inevitable… another two hours until assistance arrives means lying helpless in damp and demoralising conditions. On the plus side, the Welsh Government are soon to be washing their hands of their responsibilities and local authorities across Wales can screw disabled people for all they can by providing them with inadequate care and support whilst squirrelling away funds meant for the most vulnerable in society.

I am OK now after my PA came to the rescue, but one thing is for sure – this sort of situation can’t go on for much longer. WCBC MUST face up to the evidence that I have gathered from my GP, Neurologist, Urologist, District Nurses, Physiotherapist and Occupational Therapist that I need constant support in my own home for my physical and mental well-being. This shouldn’t be such a battle and that is why we need to retain and improve the Welsh Independent Living Grant as not all people who receive WILG can stand up for their rights in the way that I can.

I just want my home to become a comfortable place for me to exist. At the moment, I think I would be better off being banged up in HMP Slade and sharing a cell with Fletcher and Godber…

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Evidence From England #SaveWILG

The following article was published in September 2016 by our friends at Inclusion London and  seeks to evidence the impact of the Independent Living Fund closure with a focus on the situation in London.

This is clearly a VERY IMPORTANT REPORT FOR ALL ASSEMBLY MEMBERS TO READ IN FULL as the Welsh Government intend to close the Welsh Independent Living Grant (WILG) despite clear evidence of flaws during the transition period that the Minister for Children, Older People and Social Care constantly tries to hide behind.

WHAT USE IS A TRANSITION PERIOD IF OVERWHELMING EVIDENCE AND A DEMOCRATIC VOTE IS NOT ENOUGH FOR A GOVERNMENTAL RE-THINK?

Beneath the Inclusion London article, I have added a link to a PDF report written by the DWP reporting on the effects of the closure of the ILF. This is also essential reading for all Assembly Members.

As our elected Assembly Members you have the opportunity to make a telling intervention in the lives  of disabled people with high care and support needs. You cannot let this opportunity slip through your fingers as the potential of this group of people deserves to be tapped into as we can all make a difference to the communities in which we live.

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One year on: Evaluating the impact of the closure of the Independent Living Fund

This report seeks to evidence the impact of the closure with a focus on the situation in London.

The Independent Living Fund (ILF) was shut permanently on 30 June 2015. One week before, wheelchair users tried to storm the House of Commons chamber during Prime Minister’s Question time in a last ditch attempt to prevent closure. Disabled people receiving support through the ILF who are all too familiar with the day to day realities of the mainstream care and support system, were concerned that closing the ILF would mean a removal of essential support.

This report seeks to evidence the impact of the closure with a focus on the situation in London. It brings together statistical analysis from Freedom Of Information (FOI) requests sent to all 33 London boroughs with findings from a survey sent out to London Deaf and Disabled People’s Organisations (DDPOs) as well as qualitative evidence provided by former ILF recipients concerning their experiences of transfer to Local Authority (LA) support.

Comparison of evidence gathered through comparison of the Freedom Of Information (FOI) responses, Deaf and Disabled People’s Organisations (DDPO) survey, and examples of lived experience submitted by former ILF recipients has led to a number of themes emerging:

  • Post-code lottery for former ILF recipients across Local Authorities.
  • The detrimental impacts of the ILF closure on former ILF recipients, ranging from distress and anxiety to removal of essential daily support.
  • The lack of consistent practice across different Local Authorities regarding referrals for CHC funding.
  • Limitations of the mainstream care and support system and failings in the implementation of the Care Act.
  • The value of the model of support provided by the Independent Living Fund.
  • The importance of Deaf and Disabled People’s Organisations for making Deaf and Disabled people aware of and supported to exercise their rights.

There is an urgent need for a radical rethink of how Disabled people are supported to live independently. Disabled people who use independent living support must be at the forefront of developing ideas and with adequate resources for meaningful engagement.

This also needs to happen quickly, before the memories of what effective independent living support looks like and how much Disabled people can contribute when our support needs are met fade into the distance.

Download the full report below including the Executive Summary and Easy Read version 

Watch the video of the meeting. 

Watch the video at: http://bambuser.com/v/6445226?v=m 

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More essential reading from the DWP:

Report by the DWP: independent-living-fund-post-closure-review

 

 

A season to remember…

Whatever happens in the final few games of the season, Wrexham fans can look back on a successful 2015/16 campaign with a well-earned sense of pride and achievement.

In January, our fan-owned club posted an operating profit for the first time in 15 years and last month Supporters Trust members voted overwhelmingly in favour of agreeing a 99-year lease with stadium owner Glyndwr University. Such progress shows the potential and ambition of our community club – a club that is open to everyone as shown through the remarkable work of the Disabled Supporters Association.

This will probably sound strange to most people, but one of my most cherished memories of 2015/16 came when we lost 1-3 against Woking at the Racecourse. It was a cold, dark and dismal January afternoon that I would have usually spent at home watching Final Score, but due to the fact that the DSA had worked tirelessly to open and maintain the swanky new viewing platform I was able to watch the match without getting drenched and with an excellent view of proceedings.

Dominic Vose scored a sublime free-kick, I got to meet the First Minister Carwyn Jones and I was also able to be a part of the crowd – it may have been a disappointed and disgruntled crowd, but at least I was part of it and not having to endure the waffling of Mark Clemmit.

The viewing platform has been a major success story for the club as a whole. It has drawn positive attention and admiration from the football world and beyond with visits from Lord Faulkner and Carwyn Jones, articles in the national press, plus a feature on the BBC national news. This new facility has also encouraged a push for clubs at the top of the game to follow the example we’ve set and has helped inspire the Accessible Grounds Bill that is currently going through the House of Commons.

The work that the Disabled Supporters Association has done is clearly not just benefiting Wrexham fans but disabled fans throughout the game. We can all be proud of this as all the work of the DSA relies on the generosity of sponsors, volunteers and fellow fans.

We do not want to rest on our laurels though. There is still much more work that needs to be done to make football matches accessible for all. I encourage everyone to get involved in this as there are many projects being run by the DSA and WST to help ensure our whole community can enjoy being part of our forward thinking community. We need help and support to establish a hearing loop at the ground, are currently working to become Dementia Friendly and recently held a Football v Homophobia day at the Racecourse.

In addition to all this we also need to keep pushing ahead with plans to build more viewing platforms. At the moment, we only have space to accommodate ten spectators in wheelchairs per match, but demand is far greater than this meaning that we have to operate a rota system. Therefore, supporters in wheelchairs cannot access the platform on a regular basis even though they want to support the club they love at every home game without having to put up with a poor pitch-level view and the risk of getting soaked. We also need to consider the needs of opposition supporters as everyone should be accommodated for at our stadium.

The DSA is currently approaching architects to design and price a second viewing platform to be built at the Racecourse. We have already shown other clubs the way forward with our wonderful facilities, but need to continue this good work to open our doors to everyone. After all, there is only so much of Mark Clemmit a man can stomach…

Defend Disabled People’s Right to Independent Living

A few months ago I signed an online petition to help Defend Disabled People’s Right to Independent Living.

Yesterday I received the following update on the campaign along with the latest developments. I am sharing these on my blog to raise awareness and remind people that action needs to be taken in order to protect the rights of disabled people.

If you haven’t already done so, please consider signing the petition, sharing with others and asking yourself if you could do anything to help disabled people in their fight for independent living.

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Thank you for signing the petition Defend Disabled People’s Right to Independent Living.

We would like your help again, this time to support Disabled people whose independent living support is being taken away.

Despite a well supported and fierce campaign that saw wheelchair users attempt to storm the House of Commons chamber during Prime Minister’s Questions, the Independent Living Fund tragically closed at the end of June and as a result Disabled people with high support needs are facing cuts to vital everyday support.

Many of these cuts are in breach of the Care Act 2014 and can be legally challenged, however due to recent changes to legal aid, some Disabled people are not able to fund the legal support they need.

We are asking for donations to fund legal challenges to protect care packages and the rights of Disabled people to choose to live in the community among family and friends instead of being moved into residential homes.

To find out more go to: http://dpac.uk.net/2015/12/independent-living-fighting-fund-donations-needed-now-to-support-disabled-people-hit-by-the-closure-of-the-ilf-fight-cuts-to-vital-day-to-day-support/

To donate go to: www.gofundme.com/9up7iw

Disabled People Against Cuts would also like to hear from anyone who may be affected by the social care proposals Southampton Council is consulting on which will potentially force Disabled people with high support needs out of their homes (http://www.disabilitynewsservice.com/tag/southampton-city-council/): contact mail@dpac.uk.net.

Please share this appeal with your friends, family and colleagues.

Thank you so much.

Ellen and Cherylee