The following blog has been written and published by John Pring on the excellent Disability News Service website. The amount of support that I have received is overwhelming and I really appreciate all the solidarity shown. I have just been contacted by John Pring who said that the BBC are now interested in covering the story. Exciting times ahead and please remember that I am doing this, not just for me, but for all disabled people across Wales.
The article below is brilliant, but I would always refer to my proposed trip as a short break rather than a holiday and I haven’t been away from home for longer than 1 night since the year 2000, so 24 years and counting…
To view the original article on the Disability News Service website, click here.
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A disabled campaigner is fighting his local council for the right to use some of his social care funding to take his first holiday in more than 20 years.
Nathan Lee Davies, who has a life-limiting condition, has not been away from home for more than a day trip since 2000, and is desperate for a break and a change of scenery.
Because of his health condition, he believes time is running out to take a holiday, and he says he has a right to do so.
Davies (pictured) believes all disabled people who rely on significant levels of support through their local council should be allowed to use some of that funding to take an annual break.
He cut back on trips to the cinema, restaurants, pubs and other social activities over the last few years so he could build up enough credit in his direct payments account to fund a six-day break in Florida.
After years of activism around disability rights, including writing three books and leading the #SaveWILG campaign, which fought successfully for concessions from the Welsh government after the closure of the Independent Living Fund, he was awarded an honorary fellowship from Glyndwr University.
But he is now 47, and has the life-limiting condition Friedreich’s Ataxia, which has an average life expectancy of between 40 and 50.
Although he loves his home, he does not want to be forced to stay there for 365 days a year, which he says makes him “effectively a prisoner”.
He says he has earned the right to take a short break, and so spent months planning a six-day package holiday to Florida with an accessible travel company.
He said: “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.
“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.”
But instead of supporting his plans, he says he has been penalised by Wrexham County Borough Council for being “responsible and prudent” with his direct payments funding.
Although the council will pay for the wages of his two personal assistants (PAs) in Florida, it is refusing to allow him to use his direct payments surplus to cover their flights and accommodation.
His appeal against this decision has already been rejected, an outcome and process that he believes was unfair.
The council has also now clawed back most of his £53,000 surplus.
Davies says he is being denied “a basic human right to enjoy a change of scenery for just six short nights”.
He has started a petition to the Welsh parliament, and has secured the 250 signatures needed for it to be discussed by the Senedd’s petitions committee.
He calls in the petition for local authorities in Wales to focus more on “well-being, voice and control and co-production”, which are core principles of the Welsh government’s Social Services and Well-being Act 2014.
Wrexham council this week refused to clarify the actions it had taken or confirm that Davies would not be allowed to use his direct payments surplus to cover the flights and accommodation of his PAs.
It also refused to confirm that his appeal against this decision has already been rejected.
And it refused to confirm that it had clawed back most of the £53,000 surplus, and that it realised that he would therefore not be able to take his holiday.
But a council spokesperson said in a statement: “As a social care department we have worked with Mr Davies to support him to meet his needs and explore the outcomes that he is seeking to achieve on an ongoing basis.
“His direct payments are designed to support him to meet those needs.
“Should they not be fully used by Mr Davies, or anyone else for that matter, monies are returned to the council in accordance with department policy.
“With regards to Mr Davies’ holiday, we have agreed to provide the funding to meet his care and support needs during that holiday as well as providing clear options as to how that care could be put in place during his holiday.”
