I’ve recently taken part in two different parliamentary events on the topic of adult social care reform. The first was the Adult Social Care APPG’s discussion on ‘Securing the future of Social Care in England: Priorities for Reform’, where I spoke on the panel. The second was a reception and Q&A hosted by the all-party group at the Houses of Parliament, which was addressed by the Care Minister, Gillian Keegan. The minister was among 20 MPs and peers who attended the reception on 11 July, marking almost 12 months since publication of the APPG’s Vision and Value Report highlighting the key contribution that social care makes to people’s quality of life and to local livelihoods and economies.
It was exciting to visit Parliament for the first time and we were shown around Westminster Hall and I had my photo taken in front of the stained glass where all of the new MPs are photographed.
As an expert by experience, I believe it is incredibly important for the voices of people with learning disabilities and/or autism to be heard at events like these.
As part of the panel, I was invited to share my ideas about the areas of reform which I think are important. While many of those on the panel can discuss the technical side of reform, experts by experience highlight the personal impact of these changes.
There are several areas that I think we need to consider if we are to reform social care. Perhaps surprisingly, I would encourage the sector to take more risks. A greater emphasis on community-focused care is also essential, as is improved pay for support workers and ensuring individuals receive personalised support is also very important.
Taking risks
One aspect of support that I wanted to highlight is the importance of encouraging people to take risks. For example, before the pandemic, one of my support workers encouraged me to join the Dimensions Council. This is a group of experts by experience who speak up for everyone Dimensions supports. This was initially outside of my comfort zone but has opened up a variety of opportunities for me. In October, I was elected as Vice Chair.
Encouraging people with learning disabilities and/or autism to do something different means they will have access to new opportunities. These are the things that make support what it really should be.
What is good support?
I’ve had experience of great support. I’ve moved from a residential college to supported living, and recently to independent living. I can come and go as I please and am able to do what I like in my flat. I can also go away with my support worker. I’ve also been to both London and Edinburgh - it’s good to go somewhere different!
Good support is about understanding people as individuals. Support workers need to have a sense of humour but they also have so many responsibilities. They work with different people on a whole range of tasks; basically, they have to be able to understand human behaviour. This is why it’s so important that they get the pay and recognition they deserve.
Focussing on community
I also believe it is vital to make sure the people on the brink of care don’t fall through the gaps.
I have been supported by Dimensions since I was 21; I’m now 27 and live in the community because of the support I receive. However, my brother, who came from the same background, has often struggled with his support. Equally, a few months ago I saw someone I knew from my old college who was sitting on the street and didn’t seem to be doing very well.
Clearly, it is easy for the needs of some people to be missed by the current system. Often, reform in social care focusses on supporting the elderly or those who are physically disabled. We also need to be offering the right support to people who don’t necessarily need 24-hour care but some support so they can live on their own or with others.
For those who require lifelong medical support, issues such as offering improved financial security are very important. For those with less extensive support needs, we must focus on making social care more invested in the community.
The current system tends to focus funding on supporting individuals with basic housework and skills. However, I would prefer that funding be focused on helping people become more involved in the community, so they can pursue their interests and make friends like everyone else.
Personalised care
Another aspect of social care that I believe is crucial is ensuring everyone has access to the tailored support they need. With vacancies in the social care sector continuing to rise, the pressures support workers face are clear - staff shortages rose by 52% in the last year to 165,000 vacancies. However, support is very diverse and must be personalised to each individual.
With this in mind, there needs to be the funding and structures in place to enable support workers to deliver the tailored care people need. For example, providing transport support can be essential to ensuring support workers are able to be there when they are needed.
Amplifying voices
Ultimately, the biggest change I would like to see in the sector is for experts by experience to have their voices heard at every level of discussion. It was exciting to speak to members of the APPG and see them in person for the first time. I like to think that I made an impact.
Through my experience on the Dimensions Council, I have seen how my peers can feel frustrated by their lack of a say in the issues that matter to them.
Equally, it is important for our perspective to be heard across a variety of sectors, like education and health. Involving experts by experience at the earliest possible stage, such as when people are being trained within the social care sector, can enable us to make an impact. Things like the Oliver McGowan training are an important move in the right direction.
These opportunities to meet with the Adult Social Care APPG were a step in the right direction but this cannot be a one-off. As we emerge from the pandemic, we have an opportunity to drive change. Amplifying the voices of experts by experience can ensure we are leading the way in social care reform.
I’m pleased to say that the Adult Social Care APPG has asked me to be part of its Lived Experience Working Group and alongside other advocates within Dimensions I’ll be able to influence the work of this all-party group and I’m very happy about that.
Chelsea Lovall is expert by experience and Quality Consultant for Dimensions UK.
