I am writing the following blog in a very careful manner. I just want to relay the facts and the injustice, as I see it, being served to me by the Adult Social Care department at Wrexham County Borough Council (WCBC).
In 2022, I expressed an interest in taking a short break to Florida. This is something that means the world to me, as I have not been away from home for something longer than a day trip since the year 2000. In that time, I have been through the trauma of divorce, three operations on my kidney, depression, loneliness, written three books, been awarded an Honorary Fellowship from Glyndwr University for my work on Disability Rights and lead the successful #SaveWILG campaign. I think if anyone deserves a short break, then it is me.
I have to do something right now because the median age of death for someone with Friedreich’s Ataxia is 35 years of age. I am currently 46.
Therefore, I decided that the time to act is now. I am going to be a long time dead, so I have to live in the here and now. I had enough money in my Direct Payments account to make this trip a reality for every year for the rest of my limited life. However, as I will explain later in this blog, it seems that I have been penalised by WCBC for being responsible and prudent with my Direct Payments money.
I spent many months researching this short break, and as I have a BA (Hons) in American Studies this is why I chose to concentrate on visiting the USA. I totally rejected trips to Las Vegas and Chicago due to the eye-watering costs involved, but when Enable Holidays gave me a quote for spending six nights in Florida, I allowed myself to start getting excited.
Enable Holidays make dreams come true for thousands of disabled people by designing breaks specifically for disabled people and their families. They sort out package holidays and include making sure all my disability-related needs are met at a reasonable cost.
I have never been looking for someone to pay for my holiday. I have managed to save a little over the years to ensure that I can fund my own short break. This is how it should be and I do not want any special treatment. What I do need help with is to fund the flights and accommodation for my two Personal Assistants who I need to travel with me.
I foolishly thought that I could utilise my Direct Payments to help fund this trip. Indeed, WCBC agreed to pay for the staff wages while they are assisting me in Florida. It will definitely not be a jolly for them as they will just be making sure that all my needs are met and I enjoy myself with some much needed respite.
However, WCBC are refusing to pay for the flights and accommodation of my staff, even though I had enough saved money in my Direct Payments account to fund this trip several times over. However, because WCBC Adult Social Care have failed to co-produce an adequate Care and Support Plan with me, or indeed, ask me what mattered most to me in line with the guidance set out under the Social Services and Wellbeing (Wales) Act of 2014, I am being denied a basic human right to enjoy a change of scenery for just six short nights.
What WCBC have done is suspended my Direct Payments for October, November and December 2023 to clawback what they saw as unspent money in my Direct Payment account. It was merely kept to one side to be able to experience an event something like the short break I have planned.
The fact that I have built up such a considerable underspend in my Direct Payments account is also due to the shocking state of my Care and Support Plan, which includes no wellbeing outcomes that I can spend my Direct Payments money on. It just feels as if I am being penalised for being responsible with my money and not wasting it on needless trips to restaurants, pubs or the cinema.
I have therefor started a petition that I have submitted to the Welsh Senedd in the hope of gaining further clarity on the use of Direct Payments and the ringfenced Welsh Independent Living Grant (WILG) that I worked so hard to save for disabled people across Wales. To view the petition and show your support, click on this paragraph.
It is extremely important for my physical health and mental wellbeing that I am able to make this trip become an annual reality. I had saved this money in my Direct Payments account, but WCBC have currently clawed this back so that I can now only rely on my own ingenuity and the kindness of strangers. I know this is a tough time for everyone and we are all victims of this right wing Cost of Living Crisis, but crowdfunding is one of my only ways to achieve my dream.
Before going down the Crowdfunding route, I want to try to raise sufficient funds by selling the remainder of the books that I have written over the past 11 years. Every Silver Lining has a Cloud is an autobiographical tour around the football grounds of the Welsh Premier League, Dancing on Thin Ice is a collection of poetry that I wrote throughout 2017 and Dirty Old Town is a focus on Wrexham AFC’s first experience in the Football League from 1921 until 2008.
Feel free to ask any questions that you may have by emailing me via the contact page, or by using Facebook, Twitter or Instagram.
If you have read this far, thank you for reading and I look forward to sharing photographs on my blog from Florida in May 2024.