I can’t believe we are already in the last month of 2020. The year has just flown by, probably due to the fact that nobody has had anything to look forward to except further frustration.
Unbelievably, I am in the same situation that I was this time last year, and the year before that, and the year before that, and so on… For the past six years or so I have been campaigning for independent living for all disabled people across Wales. I have poured all my energy into this and I hope I have made a difference to the lives of people in the disabled community.
It is my own selfless fault, but I am still waiting for the final meeting between myself, ICS and Wrexham County Borough Council (WCBC) to be arranged. Due to the Covid limitations, this meeting was going to take place via video conferencing, but I feel that this is not an adequate solution for someone like myself who suffers from hearing difficulties and speech issues. I would prefer to wait until a face-to-face meeting is possible as I am just about coping with the 24/7 support package that I currently have as an interim measure.
I have seen a copy of the Independent Social Worker’s reassessment in which she supports my obvious need for 24/7 support to live independently, but rejects my request for periods of 2:1 support throughout the day. My need for 2:1 support is absolutely crucial if I am ever to meet my mental and physical wellbeing needs.
I feel that I have adequately displayed the essential nature of this need, but previous assessments have offered me ridiculously minimal support when I was clearly in need of 24/7 support.
I am looking forward to a dialogue between equals – a negotiation – with the ICS Social Worker and WCBC when the time is right. I cannot cope anymore with being treated like a ‘thing’ that just needs monitoring by any one person, but a fully functioning and very active human being who requires all ten of the wellbeing domains to be recognised and responded to. This will then allow me to live comfortably and safely but also continue to function as an activist / author / blogger / artist / friend / son and whatever other aspects of my life I want to pursue. That is my right under law with the Social Services and Wellbeing (Wales) Act 2014, supporting me.
I have two half-written books that I would like to finish writing in addition to all the opportunities that I am missing out on due to insufficient 1:1 support. It is impossible for one person to help me with my communication needs and perform all the other daily tasks that demand attention. To maintain accessible living standards, I require staff to complete household chores, such as cleaning and cooking – not to mention additional jobs such as shopping and medication collection – while I’m focusing on the essential written work that I need to complete for the benefit of the local community and my own mental sanity.
Furthermore, if I am only allowed access to 1:1 support, how am I supposed to cope if one of my staff members has to pop to the shops for milk or is called out on a personal emergency? Unfortunately, I am unable to be left alone due to the rapid progression of my disability. There are certainly more discussions to be had with ICS and WCBC before my health and wellbeing needs are met.
Unbelievably, the fight continues…
