I have thought long and hard about posting this blog after an exhausting trip to Cardiff on Tuesday [June 5th] to meet with Ministers and discuss the future of the Welsh Independent Living Grant (WILG).

It was a very productive day, but one that resulted in much work still to be done along with a conscious effort on my behalf to review, renew and strengthen my aims and objectives for this campaign.

I had to start the day at 03:00 to venture down to Cardiff and meet the Petitions Committee at 10:00 in the Senedd. The committee are very much onside with the objective to save WILG , and Huw Irranca-Davies AM is due to give evidence in response on June 19th. Every minister on the committee is very supportive, and spent some time chatting to me, Adam and Angie following this meeting. A video of our meeting with the Petitions Committee can be viewed here. Our section on the meeting can be viewed after 1Hr 17Min.

We were full of positivity for our next meeting with the Minister for Children, Older People and Social Care, Huw Irranca-Davies AM, but he spent the first fifteen minutes on the defensive and stated why the Welsh Government would be “standing firm” on their commitment to scrap WILG, and pass all responsibility for social care to local authorities. We all chipped in, but Adam Samuels was particularly effective in getting his point across, leading to HID asking Adam to ” calm down”. I don’t think Huw liked being spoken to by a confident person who was in possession of some convincing arguments about money and neo-liberalism.

HID had to leave early to support Carwyn Jones answering First Minister questions. You would have thought Carwyn was big enough to face these questions alone, #justsaying.

We were then left speaking to Gareth Griffiths, the Special Policy Advisor to HID. This was a positive and constructive conversation. We appreciated his points and vice versa. There could be areas to work towards a special compromise here, as Mr Griffiths struck a pragmatic and concilliatory tone. He advised me to send him all of the information that we have at our disposal, which shows that local authorities do not have a clear grasp on the transition process. We will also be submitting evidence of individuals who have suffered dramatic cuts in their levels of care, and the success of other schemes such as the Scottish ILF.

This was followed by positive meetings with both Mark Drakeford AM and Julie Morgan AM. Now is the time to let the information gleaned from these meetings sink in, and wait to see what happens at the Petitions Committee meeting in a couple of weeks. However, anyone who knows me will realise that I am not built to remain silent, and action must be taken immediately, in an appropriate and decisive manner.

I have been lying awake most of the night, since returning from Cardiff and it was during these frustrating hours that I discovered what we must do. All talk of compromise should be rejected. We have been running a hugely successful campaign, that has gained much momentum. Now is the time to use the soft power we have collected, in a positive manner, and keep on campaigning. It is essential that we do so, because the fight to save WILG is vital to disability rights across the UK. We owe it to our friends in England and the 1,300 recipients [though this has gone down to 1,250 according to the latest figures quoted by the Welsh Government].

The fact that i qualify for extra hours of care and support is not something that i am particularly happy about, but it is a fact that i require extra help to get the most out of my limited life. My desire for extra care is not motivated by greed at all, simply NEED. I do not need or expect to see “every penny piece” of the £27 million given to the Welsh Government to provide full Social Care to former ILF recipients. I would gladly see a fraction of this money being spent on administration so that we had a independent social worker to turn to rather than complete reliance on local authorities.

Former ILF recipients who currently receive WILG, have already been through an assessment process to prove that they have a certain level of care and support needs to be eligible for special treatment. Why should this certainty be pulled from underneath them in a cruel and callous manner? 

HID keeps saying that 400 WILG recipients have already made the transfer to direct payment, and some of these have received more hours of care. They are still at the mercy of underfunded local authorities and even though the Welsh Government promised to keep an eye on this, I cannot see this happening once the transition period has ended.

I was worrying about all of this last night. At 3.00 I woke up needing the loo. I use a bottle beside my bed that I had already filled with urine before waking up again. I struggled for 30 minutes to pick up  my full urinal, with my spasticated hands, through fear of spillage. When I finally managed to move the urinal in to position, I had already lost some of the contents of my bladder  on to the mattress. I had to remain on my wet mattress until help arrived at 9.00am. Try telling me that I don’t deserve 24 hour care, something that my own social worker told me that I would have “no chance” of getting from Wrexham Council, as “no one in Wrexham gets that amount of care”.

I should also note that I do not believe that I am in a good mental place to be going through the stresses and strains of another social care reassessment. It is totally needless and uncalled for, but it could save Wrexham Council a few pennies and we must remember that they need to find some spare cash to give the councillors another pay rise, and the latest iPads. I shouldn’t really complain.

I don’t see why we can’t protect people with high care and support needs, by noting all of the problems in this transition period and extending it indefinitely for at least 1,250 people. We should also allow this scheme to be open to others with high care and support needs, who need the guarantee of adequate support that local authorities alone just cannot provide. After bringing the campaign so far, I have certainly got no intention of cosying up to Wrexham Council. Someone has got to put their neck on the line for the sake of disabled rights in the UK, it may as well be me. I want to show the authorities up for what they really are.

I would also ask, yet again, for full access again to the consultation papers that were sent out to recipients. The Welsh Government have previously tried to fob us off with a mere summary that they have produced. This is not what we are asking for as we are only to aware that a summary document can be edited to suit the views of the Government. It does appear that the consultation was not adequately considered and that a decision to scrap WILG had been made before the consultation process even started. It also seems highly unusual that no minutes exist from the stakeholder group meetings.

I am not asking for the moon on a stick, just the chance to play the game of life on a level playing field. In turn, this would give Welsh Labour the opportunity to create some positive PR [at a time when they need it], and show that politicians can show some humility and humanity.

The fight continues …