Personalisation Expert Panel: Strengthening Disabled People’s UserLed Organisations Programme Rich Watts, 6 December 2011 Introduction Thank

you for inviting me here today. I think it is a sign of the regard in which the Personalisation Expert Panel is held that Minister is here to talk with you today and answer questions from the audience. It is also a sign of the central importance that she places on the role of Disabled People’s User-Led Organisations and the work that they do. This is not only in the personalisation agenda, but also includes areas such as addressing disability hate crime, supporting employment opportunities for disabled people and in ensuring a strong voice for disabled people in the health system through HealthWatch. The role that DPULOs can play I think the focus that is on DPULOs is right, because the role they can and do already play is unique. I wanted to take some time today to describe this unique role and the difference it makes. Voice The first and foremost role DPULOs have is that they are the authentic representative voice of disabled people at a local level.

This voice can focus on shaping, deciding and reviewing service provision. It also includes input to equality schemes, access and involvement groups and other less formal forums. It is coproduction in every sense. This voice can be to find solutions to individual or collective issues. DPULOs are able to pool creativity, knowledge and experience of their members. This equates to using the ‘lived experience’ of disabled people for the benefit of their peers. Finally, DPULOs in collecting and representing the voice of disabled people, can influence and constructively campaign to support decision makers in the tough decisions they have to make. Business The second area DPULOs add value to is in delivering better services with disabled people. Where services are delivered by DPULOs they are typically shaped and delivered by disabled people, meaning they provide a peer-to-peer approach which calls upon direct personal experience. DPULOs can and do work across more than one policy area – they are a bit more nimble than statutory bodies and can more easily able to ‘join up the dots’ on the ground. They respond to the needs of a someone rather a service user. This can particularly be seen in their central involvement in the current Right to Control Trailblazers – an example of which I’ll use later. Unique outcomes

DPULOs are unique in the way they combine these two areas: of voice and service. And this leads to outcomes that DPULOs uniquely achieve. DPULOs have legitimacy, both with disabled people and service commissioners. DPULOs offer pathways for disabled people to realised their ambitions and fulfil their potential, be it formally or informally, and therefore contribute to their local communities Finally, and this points is an important one to stress, DPULOs operate from a values base which encompasses the social model of disability and the principles of independent living. The difference that DPULOs can make What about the difference that DPULOs can make? In an environment that requires organisations to do more with less, DPULOs are one of the best examples of where this has been achieved in practice. Direct Payments Let’s take Direct Payments, which we know are vital if disabled people are to have choice and control over their care and support, and which we know the government is strongly committed to. ODI’s Support Advocacy and Brokerage programme published research earlier this year about the difference DPULOs make in provision of information and support planning. In some areas where DPULOs are well established and the information service is delivered by people who themselves have a Direct Payment, the uptake of Direct Payments of all people using the service was 89%. The average uptake within local authorities was 13%.

Similarly, where support planning was done by staff within the local authority, the take up of Direct Payments was 17%. When support planning was done independently through a peer-led service within a DPULO, the equivalent figure was 100%. When direct costs are taken into account, then these better outcomes are delivered for around the same hourly rate by the DPULO and the council. If we take full costs into account, then the evidence points to DPULOs delivering better outcomes for a cheaper hourly rate. Joining the dots up I mentioned that DPULOs join the dots up on the ground. The Right to Control Trailblazers have many examples of how this has happened in practice. For example, a Right to Control Trailblazer DPULO spent time with a man who had lost employment because of his mental health condition. They spent time with him to understand the issues he faced and to get to know him better. In doing so, they realised he had a great love of guitar and supported him to make the most of this. Another Trailblazer user’s mental health condition had led to social isolation. However, he had always wanted to learn the guitar. The DPULO involved put two and two together very quickly and put one person in touch with the other. One used his Direct Payment to purchase a guitar and take up lessons from the other. He also bought a bike that allowed him to visit the other person in a neutral location. Not only did he build his own confidence, but this provided a route into running guitar lessons – and potential self-employment – for other person. Cold hard cash

This is all very well. But let’s talk cold hard cash. Recent evidence was published from a project which worked to promote better collaboration between health agencies and local communities through a community development approach. In this project, community development represented the involvement of service users in developing, delivering and reviewing health services. That is, the work of DPULOs. The usual better outcomes were found. But there were substantial financial returns to be had, too. A two-year community development project in one area alone was found to save £3.80 for every £1 invested in the community development programme. If that same approach was applied in 3 neighbouring areas, it was estimated there would be a likely return of £6.40 for every £1 invested. If commissioners want more for less, they could do no better than look to DPULOs. The challenges that DPULOs face Nevertheless, there are clear challenges that DPULOs currently face. The local environment We know it’s a difficult environment at the moment. Local authorities face significant pressures in making their numbers add up. The voluntary sector more generally is being affected in different ways, and it is difficult for DPULOs to manage in this environment. This translates to questions of DPULOs receiving the right infrastructure support and whether the playing field can be levelled when it comes to the procurement and tendering process. Representing all disabled people

DPULOs have to ensure that they cover all impairment groups. Traditionally, DPULOs have covered physical and sensory impairments well, and we need to ensure our work is equally accessible across all impairment groups, especially people with mental health conditions and learning disabilities. This was put into even sharper focus last week with publication of employment rates for disabled people. The overall gap between disabled and non-disabled people the same. But employment rate for people with learning disabilities remains at 14% compared to 46% for others. Commissioner attitudes The final challenge is the attitude of commissioners. I think they are beginning to understand the added value that DPULOs can provide. But there is still a long way to go to evidence this in the ways they understand. We need to reassure commissioners that working with DPULOs isn’t a risk: it’s a logical decision that makes sense on every front. The Strengthening DPULOs Programme The programme that Minister launched and that I’m privileged to be a part of recognises that challenges that DPULOs face. That’s why we have Ambassadors – like Berni Vincent, who is here today – and volunteer experts to support DPULOs directly. It’s why we have 3m of extra funding that DPULOs can bid for to build their strength and sustainability. In the first four months of the programme, we have supported DPULOs at the rate of one a week, providing over 120k of funding support and hundreds of hours of non-financial support already.

It’s a good start, but we’ll work harder over the four years of the programme. It’s why we are keen to continue to make the case for DPULOs, providing and sharing evidence to underpin this. Building a better future If I may, I’d like to finish with a brief story. There were two stonemasons, each sitting down chiselling diligently at a piece of stone. A passer-by stopped and asked them what they were doing. The first looked up and said that they were working hard on the stone in front of them. The second looked up and said that they were building a cathedral. Each DPULO is a building block. It takes hard work, huge dedication and a relentless focus to shape each DPULO so that it can achieve what it is there to achieve. A strong voice. A sustainable offer for its members and commissioners. But the wider goal that we are working towards is not just a strong DPULO in every part of the country. Our bigger picture – our cathedral – is to achieve equality for disabled people. Thank you.