Caring for our future: Shared ambitions for care and support Department of Health Consultation

ecdp submission
December 2011

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Executive Summary
The members we consulted with were clear that the personalisation agenda was the future of social care and felt that personal budgets worked well as a vehicle for providing this to individuals. It was recognised that personal budgets are not available to everyone, and key barriers included a lack of information for potential users and the attitudes of those in a position to offer them. A key part of personalised services for many members is the option to directly employ PAs to support them. PAs were viewed as more reliable and able to offer a more personal service to the disabled person than agency staff. Personalised care was viewed as a more holistic approach to supporting the individual. Personal care needs were viewed as a subset of an individual’s overall needs and it was felt that PAs are in a better position to offer both care and the wider support an individual requires than agency staff. Alongside this, people felt they should be able to purchase the products they need to live independently with the same buying-power as any other consumer. It was felt that currently, disabled people were automatically charged more and given less choice. In order to ensure all people entitled have access to the goods, services, benefits and support they need, it was suggested there needs to be a much clearer process for obtaining support and this need to be better communicated by the organisations disabled people are in contact with. Ideally, these would be administered centrally to prevent people ‘getting lost in the system’.

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Introduction
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This document forms ecdp’s response to the Department of Health consultation on the future of care and support, Caring for our future1. This response has been informed by the lived experience of ecdp members. In order to gather this evidence, ecdp held two focus groups, formed of 25 members with different experiences of care and support services, of different ages and with different impairments. Our response focuses on two of the six key areas defined by Department of Health; increased personalisation and choice2 and creating a more responsive care market3. Both topics were discussed by the focus groups. It should be noted that a number of ecdp’s members hold personal budgets, as they use the services ecdp provides to support them with management of their finances and care arrangements.

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Department of Health – Caring for our future: http://caringforourfuture.dh.gov.uk/ Department of Health – Increased personalisation and choice http://caringforourfuture.dh.gov.uk/2011/09/15/personalisation/ 3 Department of Health – Creating a more diverse and Caring for our future: Shared ambitions for care and support – http://caringforourfuture.dh.gov.uk/2011/09/15/care-market/ ecdp submission Page 4 of 9

Increased Personalisation and Choice
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All members agreed that services should be provided in a way that reflects the individual and the choices they make about their lives, to ensure that disabled people have exactly the same control as non-disabled people. [Care] should be person centred. Each person has a different view and different impairments.4

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Personalised care is not viewed simply as a means to having care needs met, but to ensuring that the individual can live their life with their care needs having a minimum impact on how they do so. As such, a shift towards controlling ones own care budget was widely welcomed. This was seen to give people the freedom to address their wider support needs, including accessing the community and employment. Widening Personal Budgets

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It is important that all disabled and older people are given the support they need to be in control of their care, not just those who are able to independently manage a Personal Budget. For example, discussions around the future of care and support have focused largely on the increasing number – and therefore need – of older people; however, they are among those who are least likely to be offered personalised support. Some felt that this was because Social Workers do not believe everyone could manage the increased responsibility and were not aware of the extra help they could signpost people to. Disabled people’s user-led organisations provide vital assistance for those who require extra support to manage a Personal Budget; however, member experience suggests many are not signposted to the vital services these can provide.

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Creating a more diverse and responsive care market
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Members agreed that the social care market is in need of development in order to deliver personalised services to care users. Discussions have tended to focus on the changing role of care providers, but members told us that they would like to see this widened to incorporate other aspects of support, which are not care specific. As noted above, those we worked with saw care as a wider subset of personal needs being met. Disabled people as consumers

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With growing demand, the supply side of the market also needs to be addressed. Disabled people we have consulted with wish to be empowered consumers of products within the care market, with access to a variety of products and the choice to buy those which most suit them. For many, a lack of information about the products they are entitled to had meant they had purchased things they were entitled to be provided with at no cost. Members felt that products cost more for disabled people, even if they were available in the mainstream market and so value was felt to be a key area to address alongside choice. The role of Personal Assistants

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Members particularly focused on the role of the Personal Assistant (PA) in the social care market and the changing relationship disabled people have with those who provide their care. You need to employ your own PAs. That’s what [personalisation] is all about.5

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There was unanimous consensus among those we consulted with that PAs provided a better level of care than agencies have in the past, for a number of reasons.
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Primarily, using a PA puts the disabled person in a position of control. The PA is their employee and they can be managed as such. For some though, the PA was ‘more than an employee’ because they were able to build a relationship with their staff, who are more constant than shift-working agency staff. Employing staff is about continuity of care.6

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Within the context of an established relationship, disabled people were able to train and direct their PAs to support them in the best way possible. Given the emphasis our members put on addressing the needs of the disabled person which do not specifically relate to care, the PA was also seen to provide wider support than a member of agency staff whose restricted time often meant they could only address personal care requirements. Members had differing views on the importance of registration and regulation of PAs. For some, the increased cost of CRB checking was viewed as a barrier, whereas for others, it was seen as an unnecessary cost. Communication and Access in the Care Market

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Access to the social care market was considered to be complicated and inconsistent. Members suggested a great deal of work needed to be done to join-up services available. Members had differing experiences of seeking and finding services, and had accessed them through a number of channels, including disabled peoples userled organisations, Doctors surgeries and their Social Workers. Interestingly, Social Care Direct7 was not talked about as a portal to services. The response of the disabled people we consulted with suggests that a key barrier to personalised services currently is a lack of joined-up working among professionals with the responsibility of delivering it. Members felt that a central hub, with an appointed case worker would stop people getting lost in a system and losing out on support. The important role of disabled people’s user-led organisations, run by those
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with their own lived experience of social care services and using personalised support, was emphasised. Members felt these organisations had an essential role in supporting disabled people to navigate these systems and were best placed to ensure that they received the best package of personalised support possible. Comments submitted December 2011. For further information on any element of this document please contact Faye Savage (Lived Experience Officer, ecdp) on fsavage@ecdp.org.uk or 01245 392300.

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Appendix 1 – about ecdp
1. ecdp is an organisation run by and for disabled and older people. Established in 1995 our origins are firmly rooted in a belief that the voice of disabled and older people, both as individuals and collectively, is vital if the lives of disabled and older people are to be enhanced. Our vision is to enhance the everyday lives of disabled and older people in Essex and beyond. We do this by: Actively involving and engaging with disabled and older people Delivering a range of high quality services, projects and programmes Working in partnership with a range of stakeholders in the public, private and voluntary sectors Shaping and influencing strategy, policy and practice Creating a professional, effective and efficient organisation that can and does deliver. We provide a wide range of support, information, advice and guidance services, primarily in the field of social care. We currently8 provide Direct Payment / Personal Budget support services to approximately 3,900 clients in 3 services across 4 local authority areas. We are also closely involved in the design and delivery of the Right to Control Trailblazer in Essex. As an organisation we have 43 staff, approx £1.7m turnover, nearly 190 volunteers and approximately 1,700 members of all ages and impairment groups.

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