Direct Payments – Some real progress but so much further to go….
Vin West has been a parent and carer for 30 years. His daughter was the first person in Gwynedd to receive Direct Payments. He helped found the Gwynedd Direct Payments Forum in 2000 and recently supported Gwynedd Social Services, through co-producing a new Direct Payments policy and staff guidance, in line with the 2014 Social Services and Well-being (Wales) Act. He has been appointed to a number of Ministerial Advisory Groups since 2000, most recently the Direct Payments Practice and Information Exchange Group. He is also a member of the National Social Services Partnership Board, chaired by Minister for Social Services and Public Health, Rebecca Evans AM.
Here is his story…
In the mid-1990s we were getting nowhere asking our local authority for support with the multiple therapies and exercises we were carrying out with our young teenage daughter, to overcome the effects of her cerebral palsy, and ensure she had the best possible chance of health and mobility. The authority repeatedly offered us “sitters” to simply ‘be’ with our daughter for us to go out, and couldn’t understand that this was not what we or she wanted!
Then we became aware that Direct Payments legislation was being taken through Parliament and that this would enable us to employ people to do as WE asked them to. We could finally have the extra hands we needed to carry out the therapies, as well as someone to help our daughter to do the things she was interested in and to free us to spend time with our other children or do other things that were important to us.
I helped found a pressure group to lobby the authority to respond to the 1996 Act when it came into force in ’97, but it took us another five years of campaigning and meetings before they relented and our daughter became the first Direct Payments recipient. Our lives changed!
Our daughter’s first Personal Assistant was a 25 year old woman with bright pink dreadlocks, tattoos and piercings. She was wonderful! We had a lot to teach her about the work that she was to do but her attitude was spot on from the start, and she stayed with us for some years until she needed to find full time work. She was soon managing a residential home.
Over the years since then, we have gradually stepped back and taken on more PAs. This is so that, over time, our daughter will have 24 hour support exclusively from her PAs, and we will be in the background except when needed.
Our daughter leads a very full life – swimming and using various equipment at the gym once or twice a week, visiting friends at least once a week, walking with her orthosis every day. She has also learned to use voice dictation on her laptop and uses a Canadian website to find pen-friends, where her messages were said by the moderators to be so good that she was invited to be a host on the site.
Direct Payments has tremendous potential that is completely ignored by a small number of authorities, partly explored by some and wholeheartedly embraced by only a few. Despite the clear and dramatic improvement in our daughter’s quality of life that we have been reporting to the authority, its attitude remained resistant and obstructive until very recently and I had to make a series of formal complaints from 2003 to 2014.
There remain some insidious myths and misunderstandings within local authorities that tend to centre on a distrust of citizens to spend Direct Payments sensibly or responsibly, but we and many other individuals and families have shown that we have made vastly better use of these small payments than any large organisation ever could.
At a time when research has shown repeatedly that some commercial providers of support services put profit before the health and safety of both their clients and their staff, it is past time for all local authorities to enthusiastically embrace and promote Direct Payments – with all of the support and encouragement needed for individuals and families to make it a success.
Welsh Government has grown impatient for local government to get the message and has used the Social Services and Well-being (Wales) Act 2014 Act to try to bring about a radical and fundamental transformation in the way social services relate to and support disabled people and unpaid carers. The previous Deputy Minister’s mantra was “It is no longer good enough to do things differently – we must do different things!”
The language in Welsh Government guidance as far back as 1997 to “be innovative” and “be creative” and “explore alternatives” could not be clearer. Citizens were not just ‘allowed’ to try new ways of arranging their support but were actively encouraged to look much more imaginatively at how they want to live their lives and “what matters” to them, so that their Direct Payments could help not just to survive but to live active, engaged and productive lives within their capabilities.
We fully understand that local government has been decimated by UK government cuts but Direct Payments offers [among many other things] cost savings for local government, so what’s the problem?