Chapter 11: Listening to young people with Disabilities

Introduction

Covid-19 has impacted the lives of many, but it has been suggested that people with disabilities experience a triple jeopardy, with an increased risk from the virus itself, reduced access to their normal support and provision, and adverse social impacts as a result of restrictions (Shakespeare, Ndagire and Seketi, 2021). Research is scarce on the impact of Covid-19 on people with disabilities and where it does exist, it tends to focus on adults, thus neglecting the experiences of young people. The few studies that do consider the experiences of young people with disabilities are from the perspective of parents and carers and not young people themselves (see for example The Disabled Children’s Partnership, 2020; Rogers et al., 2020). Meanwhile, there has been a rise in research into the impact of Covid-19 on young people more generally.

The research reported here intended to address this gap in knowledge by asking young people with disabilities across six local authorities in England to share their experiences of support during the pandemic, so we could learn from these experiences and suggest changes to better support young people with disabilities during the pandemic and beyond.

Methodology

This research was part of a wider project exploring how social care services have supported children, young people, and their families during the pandemic across six local authorities: Cornwall, Essex, Hertfordshire, Medway, Stockport and South Tyneside. Using participatory research methodology, we worked with a research team of 25 care leavers and their support workers from the six local authorities to identify priority areas and develop a questionnaire to explore care leavers experiences of support during the pandemic. These priority areas and questions were adapted and used in the current research to explore the experiences of young people with disabilities.

A guided conversation template was developed relating to the priority areas and carried out by professionals who worked closely with each young person. Twenty-one young people with disabilities aged 16-24 participated: ten male, six female and one transitioning young person. The criteria for participation were that each young person had their cases open to social care and were able to consent for themselves.

Thematic analysis was conducted using the priority areas as overarching themes.

Findings

Young people spoke about their experiences of support both before and during the pandemic under four broad themes:

· Practical supports: An array of accommodation provision was described such as living with family and in supported living arrangements, but some young people were living chaotically which impacted their sense of vulnerability, security and belonging. Although most young people had support to manage their finances others needed help with budgeting to promote independence. Whilst most were in education/training before Covid-19, only some continued during the pandemic despite being eligible to attend, due to virus anxiety.

• Support from services: Most participants were receiving support prior to the pandemic but many spoke about a lack of consistent support both before and during the pandemic. Face-to-face support was welcomed over online support.

· Anxiety and low mood: Many young people described feeling sad, upset, or anxious during the pandemic. While many sought support, others felt alone and isolated.

· Contact with family and friends: Some participants formed support bubbles with their families during Covid-19 but experienced a reduction in seeing their friends. Technology that aided remote contact was seen as useful, although some needed support to engage with this.

Conclusion

Our findings suggest that Covid-19 has, in some cases, intensified pre-existing challenges for some young people with disabilities, although examples of good practice are evident in the data. However, Shakespeare, Ndagire and Seketi (2021) emphasise the importance of consulting and communicating with people with disabilities post the pandemic to ensure they are included in policy development, programme design, and implementation. In exploring a disability-inclusive Covid-19 response in the UK at the beginning of the pandemic in 2020, Kuper et al. (2020) concluded that this response is indeed paramount. Consequently, given the significant lack of research gathering the viewpoints of young people with disabilities during the Covid-19 pandemic, the unique views in the current research will not only help in planning for future pandemics or other imminent lockdowns during this current pandemic, but will enable the voices of young people with disabilities to be heard post pandemic about decisions that are made about and for them.