Report published: Disabled children’s, young people’s, and carers’ experiences of accessing healthcare services and supports during the pandemic

A research project commissioned by the ALLIANCE explores disabled children's and young people's access to support during the pandemic.

Earlier this year, the ALLIANCE’s Children and Young People Programme commissioned Dr Liliana Arias-Urueña (University of Edinburgh) to conduct research exploring the experiences of disabled children’s, young people’s, and their carers’ experiences of accessing health care, social care services, and social security during the COVID-19 pandemic. Carried out over the course of three months with five families across Scotland, the research uncovered some of the challenges that children and young people who are disabled or living with a long term condition have faced when trying to access support.

The report explores how some measures to tackle the public health crisis associated to COVID-19 in Scotland had negative implications for disabled children’s and young people’s health, wellbeing, and rights. Their narratives also shed light on children’s and young people’s limited knowledge of the state benefits and support they have access to or are entitled to, with implications both for their experiences of accessing children’s services and the transition to adult services. Parents’ accounts of their experiences with, and views of, the social care system revealed a variety of structural issues that were already in place before the pandemic.

The report outlines a number of recommendations to address some of the challenges that participants described. These include:

• Health and Social Care Partnerships and local authorities should make greater efforts to strengthen communication channels between health practitioners, social care providers, and communities.
• Decisions-making processes and responses in both regular and emergency situations should privilege people’s dignity and their right of life.
• Offering families the support and company ‘from someone within the system’ could ease families’ feeling of abandonment, and particularly help to recover trust in services.
• Professionals and practitioners within health and social care services should consider individuals’ unique life conditions, circumstances, and experiences when offering support.
• Creating physical environments more accessible and inclusive for children and young people with diverse types of additional needs has to be urgently considered by National and Local Authorities.
• Training and capacity building programmes with a focus on the particular and unique needs that disabled people have should be offered to both healthcare and social care providers.
• The process of claiming social security benefits, including application forms and reassessment processes, should be carefully reviewed and potentially restructured by Social Security Scotland and the Department for Work and Pensions. Participants recommend more straightforward, concise, and succinct forms with less jargon and technical language. The length and necessity to be reassessed should be determined on an individual basis.

Participants also produced some creative works in collaboration with Dr Arias-Urueña, such as virtual posters and a podcast, where they spoke of recommendations for future changes and further details of their experiences. The full report can be accessed via the PDF below. A video version (with BSL/English interpretation) summarising the project, research findings, and recommendations can also be viewed on our ALLIANCE Live YouTube channel (this link will take you away from our website).

An Easy Read version of the report is currently being produced.

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