The recent pandemic has certainly changed the way newscasters have to report health stories. Yet when Boris Johnson makes an announcement about restrictions, I still have to remind my friends living in England, or indeed my English friends living in Wales that Wales has its own law and policies on health and social care issues. This was because of a change in 1997. More than 20 years on, some people still do not understand that we do things differently this side of the Prince of Wales Bridge. Back in 1997, there was a referendum on Wales having an assembly, with some people even talking about complete independence from Parliament in Westminster. Sadly, the result wasn’t as conclusive as Tony Blair would have wanted. However, there were five disabled people in Wales wanting independence of a different kind. I was one of them.
Giving disabled people control over their own care was legally not possible back then. Five people got involved with the local voluntary service to form an organisation to arrange their own care. As I sit at my desk, putting this blog together, I’m back working for that same organisation, now called Dewis Centre for Independent Living. Dewis is the Welsh word for Choice. So let’s reflect on the good, bad and the ugly. Dealing with the latter first, I certainly have far less hair than I did at the time!!! In January 1997, I was still receiving care from my family, with no concept of what it would be like to employ my own carers. I’d been recruited to “do the invoices” for this new organisation where people organise their own care. It was called the Personal Assistance Agency. For Rhondda Cynon Taff, this was groundbreaking. We launched in January 1997. for me, I was told I needed to answer questions on being disabled and receiving care from others. The reality was very different. It had been snowing in Wales and our guest speaker was stranded. With less than 20 minutes notice, I had to speak at the launch of a brand-new company, to TV reporters, the press and the local mayor!
This was the moment the changed my life. I realised I really could live on my own, with personal assistant support. Some three years later, I applied for a job in East Sussex as an independent living adviser, working within the direct payments team. During my career I’ve probably got over 500 people on direct payments and I still love the job now. Given that my parents have got older, along with acquiring disabilities themselves, it was time for me to head back to Wales in 2016. So, what was different in England to Wales?
In England, you’re allowed a pot of money to meet your care needs. A “personal budget”. In Wales, this is still not allowed. Health and Social Care still don’t work together, but on the plus side, legislation in Wales allows people to build their own care to meet their needs. Policies are very different even in neighbouring local authorities and let’s face it, it often comes down to how much your Social Worker promotes independent living and direct payments. Having been an employer for more than a decade, I decided that I really needed a qualification to prove my knowledge in employment law. I think there are still huge steps before disabled people are truly in charge of their own care, but we are much further forwards than before direct payments became legal. We still need to be able to compete on an equal footing with care agencies when it comes to recruitment power, we still need everyone to realise that many disabled people face lockdown even before the pandemic was heard about, and Social Workers truly recognise isolation. Through sheer determination, along with some very brilliant personal assistants, I work full time, I’m debt and mortgage free and planning my wedding to one of the payroll staff working within direct payments who used to process payroll for us in East Sussex! Direct payments really did change my life forever!