October Young disabled people to lead study on care and support

Research funded by Wellcome to explore disabled people’s experiences and develop guidance for law and policy

Researchers at University of Galway are to work with young people with disabilities to develop guidance on how care and support systems can be reformed to fully realise human rights.

Dr Clíona de Bhailís, a post-doctoral researcher at the University’s Centre for Disability Law and Policy, has been awarded a Wellcome Early-Career Grant of more than €700,000 to conduct the study.

The research team will work alongside young people with disabilities aged 18–24 to interview other disabled people across Ireland to gather their lived experiences of care and support. The findings will be analysed to produce evidence-based guidance on how law, policy and systems can be reformed to realise disabled people’s human rights.

Dr de Bhailís said: “The project comes at a critical moment in Ireland, with legislative developments, a referendum on family and care, and the impacts of COVID-19 reigniting public discussions on care. Despite this attention, young disabled people have often been marginalised in these debates. By placing them at the heart of the research process, the project aims to challenge assumptions about vulnerability and dependency while informing policy and practice.”

Many disabled people require access to a range of care and support to live independently, including personal and intimate care, healthcare assistance, supported decision-making, and help navigating community services. Historically, the concept of care has been controversial within the disabled people’s movement, often seen as reinforcing dependency and ignoring that disabled people also care for and support others. Under the UN Convention on the Rights of Persons with Disabilities, disabled people have a right to live in the community with choices equal to others, including choosing the types of care and support that meet their needs.

The project, entitled GenCare: Intergenerational Explorations of Care and Support for Disabled People in Ireland, will run for four years is designed to put young people at the forefront of shaping change in Ireland.

Dr de Bhailís added: “The project will take an innovative approach by establishing a collective of young disabled co-researchers who will be involved in every stage of the research. They will gather data from disabled people across Ireland, documenting their experiences of care and support, and come up with ideas for reform. Our goal is to make sure disabled people are at the heart of any future reforms while ensuring we continue to learn from past experiences.”

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