I have no other option but to publish the following open letter, as I try to create and maintain the adequate level of support that I need to help me live the independent life I deserve. I have been worrying about issues surrounding independent living ever since the coalition government was elected back in 2010 and it is time to stop being patient and start pushing forward until I can live a fulfilling life like everybody else.
On February 12th 2019, I was visited at my home by Deputy Minister for Health and Social Services, Julie Morgan MS and her civil servants who informed me that I had been successful in my long campaign to save the Welsh Independent Living Grant. I was obviously overjoyed and looking forward to finally sorting out my support package to allow me a more secure future.
To cut a long story short, I am still waiting to see any successful benefits from the four years I spent campaigning for a level playing field for former ILF recipients in Wales. I accept that I am better off now than when I started the campaign – I now receive 24/7 support, which is an improvement but still far from adequate.
Back in 2019, we were told that ICS would provide all former ILF recipients with an independent social worker. I was looking forward to working closely with this individual as opposed to the usual poor service that I received from WCBC social workers. However, ICS proved to be a disappointment and failed to deliver what had been promised. The first assessment I received from ICS proved to be wholly inadequate and ICS themselves recognised that this was not fit for purpose. I was also forced to wait longer due to the global pandemic, which of course no one can be blamed for.
I finally had a final reassessment meeting with ICS – a new independent social worker was provided and did a more thorough job in supporting me – and WCBC. I was foolish enough to think that this may be the end of the road, but far from it.
The outcome of this meeting was that the ICS social worker left the process after writing an assessment in October 2020. WCBC said that this assessment would be out of date and that I require a new OT assessment before going forward. Yes, I have made huge strides in protecting former ILF recipients and improving the standard of support that I receive, but it still feels that I am now back at square one and having to deal with WCBC incompetence alone.
At the meeting in July, the position of a middle manager to support me was addressed. I would like to create such a position to help me deal with the ludicrous amount of admin that I have to do in relation to my support staff. I should be living my life, rather than trying to sort out timesheets, wage slips, pensions, holidays and sickness matters. I made it clear that this position needed to be created urgently and a follow up meeting was talked about. It is yet to happen and I am not holding out much hope that it will happen any time this year.
I am also due an OT assessment, but surprise, surprise, I have not heard back from them about this. The whole culture of WCBC seems to be rotten and no one is taking responsibility for my well-being. My physical and mental health are seriously declining and I feel that no one really cares, despite me giving up my time to help others.
Should you have any questions, please do not hesitate to contact me. We need to find a way forward as I am facing the very real possibility of spending a seventh Xmas in succession with deep concerns over the future of my support package.
Nathan Lee Davies