WILTSHIRE CENTRE FOR INDEPENDENT LIVING – WRITTEN EVIDENCE (ASC0010)

1.0 Wiltshire Centre for Independent Living was set up in 2005 by a group of disabled people to support disabled people living in Wiltshire to have choice and control to live independent lives. Our vision is for all disabled people to be able to live independently through individual choice, control and equal rights. Our mission is to provide the support required to achieve this.

1.1 We provide a range of services to support disabled people who live or work in the county. We also provide disability advice, information and training to interested organisations, professionals or individuals.

1.2 We are completing this submission on behalf of the disabled people who we work alongside. People’s input and views have been gathered through the co-produced projects and consultations that we have run.

1.3 we will be focusing on the questions around - putting co-production at the heart of care

2.0 To what extent are the voices of people who draw on care and support and carers shaping the design and delivery of social care, irrespective of their age or circumstances? If these voices are not sufficiently heard, what is the impact of this on those who draw on care and support and carers?

2.1 The Co-production Ladder shows the different levels of engagement within co-production. Whilst many ‘service providers/commissioners’ may be frequently consulting and inform people there is still a long way to go to develop equal reciprocal partnerships with people with lived experience where they are fully embedded at the centre of co-production and co-design. Our commitment should be to strive for ‘doing with’ people and never ‘doing to’, we currently fluctuate between the three forms of engagement representing the ‘doing for’ – informing, consultation, engagement.

2.2 Whilst we may frequently inform and consult, engaging becomes more problematic for the ‘system’. The ability to effectively engage is hindered by those responsible for services being guarded over people with lived experience being able to influence and drive decisions being made, especially if there is a financial implication. However, people with lived experience do not have vastly extravagant expensive solutions to improve the service they receive.

2.3 The ability to move towards true co-production depends on the ‘systems’ ability to allow equal relationships between people who use services and the people responsible for services to develop. Where they will work together on design and delivery, making joint decisions on policy and how to deliver services.

2.4 Listening and valuing what communities have to say is at the core of how to engage and co-produce. If the community does not feel listened to or valued, they will disengage, and relationships will diminish and become cynical

3.0 It is often difficult for people who draw on care and support and carers to exercise choice and control if they do not know what good support looks like or what kinds of care and support might be available. What information and support could be helpful to address this and how could it be made available more easily?

3.1 Despite the move to personalised care when being assessed for eligibility for care services people are told what they need to live a basic existence in terms of personal care etc. Disabled people are still not put at the centre of the ‘process’ and asked what they want. The Care Act Assessment process places the emphasis on what is wrong not what is strong in a person’s life, it does not look at what a good life looks like for someone, nor does it look at what good support looks like for someone. Good support is subjective and unique to and individual, there needs to be an understanding that one cap does not fit all. 

3.2 In order for disabled and older people to have choice and control over their lives, they must be in the driving seat and be ‘facilitated’ to live their good life. There needs to be transparent clear information readily available in a range of formats that explain peoples care options. Local user led organisations providing support with personal budgets to enable people to be empowered and to take control of their lives should exist throughout the country.

3.3 All resources on peoples care options should be co-produced with people with lived experience. Local Authorities should encourage creativity and pooling of budgets to meet the ever-increasing demand on social care alongside the diminishing resources available to support people. Community building and community catalysts should be encouraged and driven by people with lived experience.

3.4 The standards of good support, the care options available to people and the support to live a good life whilst locally driven should also be universal so that you receive the ‘same’ regardless of where you live.

4.0 We recognise that people with long-term conditions require different support at different points in their lives and that transitions, such as a change in health needs, moving from children to adult services, leaving education, starting a job or moving home, can be particularly challenging. Can you describe the key moments of transition from your experience? How have the formal processes worked during these periods of transition? What could or should have been in place to make these transition moments easier?

4.1 Parent carers who received a direct payment for their child for example feel that having more support around the time of moving from children to adult’s service would be beneficial for them. What they feel they need is ways to share their knowledge and experiences of going through this process with their young person with parents of other young people. This doesn’t necessarily need to be structured and set but needs to be when people choose and how they choose to interact with each other so that they can dip in and out when they need to.

4.2 There also appears to be a lot of inconsistency in the knowledge amongst professionals and services. There needs to be greater clarity and transparency about where to get support, the expectations of support at each stage and what provision is available to meet the needs of the young person.

4.3 Many feel that the concept of the EHCP and transition process is good and could be built on, but the reality is that it is not always followed. Support plans are often seen as too wordy, contain too much information, often out of date and there appears to be little accountability for it being followed.

4.4 Young people need opportunities, support and purpose. Young people express great ambition, to see the world and realise their goals. For many young people a life of purpose is centred around paid employment. Both parent carers and young people feel that there needed to be a diverse range of opportunities to suit people of different abilities or needs, for example more access to apprenticeships which start at an earlier opportunity. Much could also be done with educating employers and workforce in disability equality and being inclusive in meaningful ways.

4.5 To live a good independent life, young people need tailored support, and an understanding of what is available as they move into adult provision. Support for life skills and to meet personal care needs was particularly needed. For those with complex health needs and life-limiting conditions, there needs to be aspirational options, support and provision. Parent/carers struggled to access appropriate support at the right time, and this could lead to crisis situations which were felt to be avoidable, especially in terms of mental health support.

4.6 Young people want meaningful relationships to be part of their futures, this includes having children and support to maintain and grow social networks of friends. Many young people really value their family’s support, but they wanted families to respect their right to make choices and decisions. Where people live in their adult life is of concern to both young people and their parent carers, it is felt that there aren’t the variety of options needed to suit all and it was very difficult to find information about the options that are available.  Accommodation needs to prioritise relationships, who people live with and where is more important than the type of accommodation.

5.0 What does truly co-produced care look like for younger and for older people with differing challenges and needs? Have you got any good examples to share?

5.1 Truly co-produced care is co-led by people with lived experience. They are valued, listened to and treated as equal partners in the relationship.

5.2 Locally, young disabled students from Fairfield Farm College became co-researchers with students and lecturers from UWE (University of the West of England) on a robotics project. The project looked at how robots can support the rights of disabled people. The young disabled people were equal participants in this piece of research, whose views, experiences and ideas were valued and listened to.

6.0 How can we design care and support arrangements which work both for the person drawing on care and support and for those who care for them? How can people who draw on care and support and carers both be involved in the planning of future services?

6.1 Our past pieces of work have shown that what the person drawing on care and support wants and what those who care for them want is not too dissimilar.

6.2 As Social Care Futures have identified, what people want is – a community where everyone belongs, to live in a place they call home, to lead the lives they want to lead, to have more resources that are better used and to share power as equals.

6.3 If these 5 key messages along with the ‘doing with’ in an equal and reciprocal partnership on the co-production ladder underpin designing future care and support arrangements then it can work for those who use the support and those who care for them.

22 April 2022