Northumbria leads £220,000 study into social care provision

A new study led by researchers at Northumbria University will document and analyse the experiences of young disabled adults who employ Personal Assistants to help with their care and support needs.

With the aim of helping to improve adult social care outcomes in England, the Supporting Sexualities and Genders research project has won £220,000 in grant funding, and will work with young adults with disabilities to learn more about their decisions and experiences of self-directed support, and how those decisions relate to sexuality and gender.

The study is funded by the National Institute of Health Research School for Social Care Research. Dr Edmund Coleman-Fountain, who focuses on researching the experiences of young people and adults in applied social care, is collaborating with researchers at Bristol University, the University of York, and Nottingham Trent University on the project.

Dr Coleman-Fountain, who is a Senior Lecturer in the department of Social Sciences at Northumbria, said: “Not a lot is known about how disabled young people make decisions on how to use their personal budget.

“Personal budgets have been in use for some time, based on the idea that care should be led by the person receiving it. Disabled people are able to spend that money in a way they think best meets their needs.

“This research will focus on beginning to investigate the choices these young people are faced with when making decisions about the kind of support they need, using the budget to recruit a Personal Assistant (PA), the kinds of relationships they have with PAs, and what part gender and sexuality plays in that.

“Young disabled adults may not know how to negotiate these issues with their PA, or how to manage PAs who respond negatively to their gender or sexuality. To help improve social care for young disabled adults, it’s important that we find out about these experiences, and help inform change for the better.”

The three key aims of the research are:

• To explore young disabled adults’ views and experiences on how the need for support related to sexuality and gender affects their relationships with PAs.
• To explore ways to make PAs and social care services more aware of the gender and sexuality related support needs of young disabled adults.
• To create information and support resources with young disabled adults and PAs that can help PAs in their role, and young disabled adults to manage their gender and sexuality-related support arrangements.

An advisory group of young disabled adults have been working with the team from the outset, alongside Disability North, a user-led charity based in Newcastle. The project is inclusive of young disabled adults who are lesbian, gay, bisexual and/or transgender (LGBT+) as well as heterosexual young disabled adults.

Dr Victoria Armstrong, Chief Executive Officer at Disability North, said: “Sexuality and gender are very important parts of who we are – our identity. Sexuality and gender matter to disabled young adults as part of their identity or what might be called their ‘intimate rights’.

“To help improve social care for disabled young adults, it is important to find out about these experiences, and this research project will explore ways to ensure these important aspects of their lives are fulfilled.”

The study will run until January 2023 and all young disabled adults who live in England, aged between 18 and 30, with at least six months experience of managing their own support arrangements can take part. Participants can provide responses in a number of ways. Find out more here about taking part.

The Department of Social Sciences at Northumbria is home to an active research community and a variety of study programmes which aim to support students to understand and explain the social and political world, how relationships and alliances are formed and communicated and how inequalities are justified and challenged. Find out more here about Social Sciences study options at Northumbria.