“When I lived in a care service I was rarely consulted about any decision, which affected my life. Decisions about where I lived were taken out of my hands and I was denied the chance to get an education, unless it fitted around the day centre schedule. Yet the organisation advertised themselves as ‘champions’ of our rights, ‘person centred’ and ‘empowering’. It’s clear that a communal approach, with shared services and a pool of staff, interviewed and chosen by senior managers, can never be truly person centred.
The system is designed to meet managerial or organisational needs. If staff speak out they put their jobs at risk. Service users who complain lack ‘credibility’, stereotyped by disability. In my own case, when I raised issues it was seen as treacherous, no matter how polite I was about it. The personal and organisational interests of those who run our care services are not only denying the rights of the people they are supposed to be representing, they are also keeping people unnecessarily dependent on them. Even when we closed the long stay hospitals we failed to truly change the culture. It is still based on arrogance and inequality.
I am pro-informed choice. People should have a say in the decisions which effect their lives and play a central role in designing their own services. For co-production to work, it needs to be designed and implemented with integrity. It is vital that the approach is not bastardised or used as another marketing tool as with person centred planning.
The provider service told me I didn’t need an advocate. They said they were there to advocate for me. The residential care home were blocking me moving on. They said an advocate might get me what I wanted but not necessarily what is best for me!”
Joe’s social worker suggested he try support brokerage and gave him a LivesthroughFriends business card. Joe knew it was right for him when it read “LivesthroughFriends Citizens not Service Users”. Joe believes that true person-centred planning can only be carried out by an independent organisation, separate to a provider, arguing that as long as a service has a vested interest in the outcomes, relating to funding and resources, they cannot “afford to be impartial”.
Joe met Bob Rhodes, the co-founder of LivesthroughFriends, who asked him what a good life looked like for him. Joe said “I was quite institutionalised after 11 years in care. I was not used to making decisions for myself. It was hard for me to ascertain what I did want in my life. But I did know what I didn’t want in my life.” This was the starting point for Joe and Bob working together. They sat down, away from the services which were limiting Joe, got to know each other and started working on Joe’s Good Life Plan.
Joe reported “Bob persuaded and cajoled to get me as a high priority on the local housing list. He helped me put together my support plan and took the proposal to the local authority for a new funding package which included all the things I had identified as important to getting the right support. This included a network facilitator, two support staff, a book keeper, someone to help me find housing and my own personal psychologist. My network facilitator empowered me to take responsibility for my own life. My new package was round 65-70% cheaper than my previous support package but with more support for me to do all the things that were important in my life. The care home offered a “one-size-fits-all” service, my new direct payment gave me support that was entirely mine and focused on what I wanted to do. Services focused on what I couldn’t do and built my package around that, LivesthroughFriends identified my strengths and built a good life package based on how I could contribute to society and form relationships in an equal and reciprocal way. My care service were adamant that I would need support for my entire life. Since working with LivesthroughFriends, I have no paid support and I support others a lot more than people now support me.”
The care standards in the current system focus too much on the cleanliness of a building or personal hygiene of the people supported but don’t take into consideration whether or not the person is doing what they want to do. Joe says “That is what quality of life is all about. Life is for living not just for existing, and no direction in life means no quality of life.”
Joe shared “I really believe in more enlightened times I would never have been in the care service and there are many others like me in the same boat. LivesthroughFriends had to rescue me but if the approach taken by LivesthroughFriends was adopted in my late teens, my life would have turned out very differently. The mental health and challenging behaviour issues would never have happened.”
Joe’s ambitions were to become a tax payer, to have his own home, to continue his education and get a paid job. Joe completed a degree, became the CEO of All Wales People First and now owns his own home and pays tax. He is no longer in receipt of any social care support because he has a natural network of support through friends and colleagues.
Joe writes “My ambition with Bob was to be a tax payer of this country. Mad to lots of people, but in my mind that was the real sign I was an equal and contributing member of society. I never thought in a million years it would happen, but that was the dream. Even then, my ambitions were to work in a supermarket warehouse or collect trolleys, nothing like I am doing now. Even if I just earned as much as my benefits, it would’ve been a source of great pride as I would feel I am paying my way in the world. That I was a genuine contributor.
When working with Bob, doors opened and kept opening for me. This is because I wasn’t trapped in a sterile care system in which everything had to be delivered between residential services, day centres or my local authority – with a focus on guaranteeing safety. Bob’s framework took those shackles off and then opportunities just came my way and I have grown with them.”
Joe is still in contact with Bob and regularly presents his story to people at conferences and webinars for organisations like NHS England, local authorities and integrated care systems to demonstrate what can be done through independent support brokerage and personal budgets used creatively and with the person at the centre.
Co-written by Joe Powell CEO of All Wales People First
Amanda Topps Associate Consultant with LivesthroughFriends