Jo Williams

Everyone has heard of MENCAP; their familiar red logo is a common feature of publicity campaigns, and their Gateway leisure initiatives, local branches, service and support systems for people with learning disabilities are known throughout the UK. MENCAP has come a long way since they dropped the ‘Little Steven’ fund-raising character after prolonged criticism of the negative image it created. In many areas they have led the way by the inclusion of people with learning disabilities in their organizational management and by the production of a wide range of more accessible publications. Yet, despite this progress, they still do not seem to have come much closer to many self-advocacy groups that continue to regard MENCAP as the bad guys, tarred with the brush of a parent organization that is trying to run people's lives for them. A change of Chief Executive does not happen often, and when it does, it inevitably raises a number of questions about the work and future direction of this most influential of organizations. I had already met Jo Williams at a number of Learning Disability TaskForce meetings since her appointment in March 2003. I had seen how she had hit the ground running with the latest round of learning disability issues. Three months on, with her feet more firmly under the desk at the Golden Lane Headquarters of MENCAP, it seemed like a good opportunity to see how she was addressing some of those questions. Jo Williams Williams comes new to the voluntary sector, having been a director of two Social Services Departments during the last 10 years and also the president of the Association of Directors of Social Services (ADSS) in 2000. She is therefore well used to the running of large organizations and representing their views at a governmental level. Her commitment was clear, having moved down from her home county of Cheshire, to live in London during the week. As a large service provider, MENCAP has a large income from fees. It also relies upon a substantial charitable income. But, as we know from ‘Little Steven’, such demands create a dilemma about the portrayal of people with learning difficulties. Williams was clear, ‘I do not want campaigns that put people in the victim role or describe them as poor, needy etc.’, adding that ‘people with learning difficulties are a part of society and must be valued as individuals in the same way as you and I are’. Jo went on to ask herself, ‘so how do we move away from tugging at people's hearts? It's a balance we have to strike but (the question has) got me thinking now about whether I am being realistic. My sense is that if we describe how it is for some people with learning disabilities at the moment, who do not enjoy equal opportunities, then I think that people are prepared to listen to that, and prepared to recognize that actually as a decent civilized society, we should try very hard to ensure all of our citizens have those same opportunities’. Moreover, ‘its takes a bit of explaining and we have got to work on it!’ There had been a clear focus on children in Jo's previous work; this seems inevitable, given the government focus for any director of Social Services over the last decade. This focus has given Jo some valuable insights, ‘the truth is when we look at services for people with learning difficulties, there is a rationing process and I suppose the rationing tends to be geared to each and every one of us demonstrating how bad our world is rather than how good it is, assessment systems are based entirely around that. So it is quite a challenge to move this around. It raises fundamental questions about the care/welfare model that we have got to get away from. We need to think about how people access services in a way that is customer orientated, with them as consumers. We need a different transaction between those who need help and those who provide, maybe direct payments is a way of doing that. Giving purchasing power to individuals is one mechanism, but we have to be more creative around all of this’. Williams is clear about her belief in the rights of people with learning difficulties to an ordinary life and has already heard a lot about the problems people face. We talked about access to ordinary health services and Jo says she is ‘keen to look at how Primary Care Trusts (PCT) and hospital boards embrace the agenda for people with learning difficulties’. She wants to change the all-too-common experience when someone with a learning disability goes into hospital and the services panic. Jo states ‘carers say the service does not get delivered unless they are there the whole time.’ She has already written to Professor Kennedy, the new Chairman of the Commission for Healthcare Audit and Inspection, suggesting a check list for each hospital PCT and the selection of a local champion to speak out for people with learning difficulties, suggesting, ‘health care needs to break some barriers down’. Jo is equally outspoken on the progress with Valuing People. ‘Partnership Boards are not always doing what they should be doing; in some places they are dire. What I have been doing in the last 3 months is talking to people through the MENCAP network, people who are participating in some outstandingly good Partnership Boards and some where people do not have a space, where (the issues) are delegated to a low level in organizations and where they are not meeting frequently’. Despite these concerns, she remains a firm believer in Partnership Boards: ‘they are fantastic, a real opportunity and where they are working best is when they are pulling in a real range of community services and where there is real inclusion’. She acknowledges that this ‘is not happening everywhere, we do not feel we need to feel defensive about this, we have to do something about it’. An early issue for Williams to tackle was a challenge from the National Forum over the MENCAP-sponsored additions to the Sexual Offences Bill. I had thought I had seen a slight shift in MENCAP's position on the bill. Jo states, ‘I am clear we should not be associated with anything that in any way denies people the opportunity to express themselves sexually and have a sexual identity, it is a part of every person's right and a part of their being. Having said that I also want to make sure there is safety for those who are not able to protect themselves from people who exploit and abuse, safety for those who are not be able to speak out or may not be able to physically put themselves in a safe place'. She concluded, ‘we need to legislate in a way that really does safeguard people but does not deny human rights’, adding that ‘this balance is a difficult trick to pull off, I do not have a simple answer and the TaskForce does not either. With increased understanding of each others viewpoint, we can resolve this, so it does not have to be self-advocacy groups verses MENCAP or anyone else. We need to spend time to reflect and work on it together because how we all give advice to Government when they write the Guidance will be critical’. Jo's experience is being put to good use on the Learning disability TaskForce. She has just been made Chair of the finance subgroup. This seemed a good opportunity to ask if Valuing People should have come with the money to implement it properly. ‘It would have been fantastic if we could have seen that level of investment. I think we have to stay optimistic and we have to believe we can be creative and imaginative about things. When people ask me about this, I think about the Children's Act, it was a fantastic piece of legislation but it never really began to bite until Frank Dobson said these children need to be treated like every other child and started the quality protects programme that came with a big investment. There is a lesson to be learnt here. Valuing People has so much richness, it is the way forward, but at the moment, as we stand, we are having to be extraordinarily creative. However, if we just continue to say we want more money from the Department of Health, I think we are just going to end up with a big headache. The TaskForce finance group will have to see whether we can make a business case for a shift in priority – that is a challenge for us!' So as MENCAP moves forward, will they be thinking about a name change as so many others have done? Jo does not think so, at present, saying, ‘I do not think we should spend too much time talking about the label, what we have to talk about now is enabling people to do things, a can-do approach, help and support, not care – inclusion and involvement, accessible information and accessible services. Maybe at some point in the future the people who are associated with MENCAP may say maybe it is time we changed the name. But it is how we take out the message and what we do and how we model what we believe in that is more important than a name change. At the moment we haven’t got the time, the money or the inclination to, it would sap our strength'.

Topic: Healthcare innovation and challenges
Subfield: Education
Field: Social Sciences
Domain: Social Sciences