How can we use ethics of care to understand the transition to adult services for adults with severe intellectual disabilities?

April 27, 2022

Key Takeaway

For people with severe intellectual disabilities, transitioning to adult services marks a significant point in their lives. It is during these times and beyond that their involvement in big decisions, such as planning transitions, and the relationships between these people and family members have never been more important. This study explores the transition of six individuals with severe intellectual disabilities; the findings highlight how professionals can also form a close relationship with these individuals. — Michael Ho

Understanding Transitions

“While the need to better understand transitions to adult services for people with severe intellectual disabilities has been acknowledged, studies that examine transitions mostly include participants with mild-to-moderate intellectual disabilities”¹ This aligns with the need to better understand the unique situation of individuals with severe intellectual disabilities transitioning to adult services.

Jacobs, Quayle, Wilkinson, and Macmahon (2021) investigated the transition experiences of six adults with severe intellectual disabilities, including transitions from school to adult services and moving out of the family home. The purpose of this study was to examine the relationships between families and professionals, to understand how they work together and what influenced their actions during transitions.

The ethics of care perspective is the backbone of this study that centers around relationships. “Ethics of care is a philosophical theory that emphasises the importance of interpersonal relationships and care to understand human flourishing.”² It stresses that vulnerability and dependence are central to human life.

The participants’ immediate environments, as well as how far transitions were shaped by organizational practices and political and cultural spheres, were explored. Each case referred to the transition experience of one of the six participants. Information was collected through different data sources and through the perspectives of different stakeholders. In all six transition journeys, the participant was involved in planning their transitions. 

Findings

The study found that the participants were involved in decisions only within their immediate setting and not across ecological levels that included policy-making and service provision. This adds to the evidence that “people with intellectual disability and their families are largely excluded from decision-making processes on wider levels.”³ 

There was evidence that participants were valued based on the relationships they had with support in their immediate environment. However, barriers included experiences of scarce resources, inflexible organizational structures, and a gap between the ideals of policies and actual possibilities within practice.

Another key finding highlights that while families, particularly mothers, play a central role in the lives of the child, relationships between people with severe intellectual disabilities and professionals cannot be overlooked.

This study highlights the understanding of transitions as multidimensional, which emphasizes that transitions never just affect one person and that they are influenced by the wider socio-economic context. This relational perspective shows that not only does the person with intellectual disabilities have needs, but their carers and other stakeholders involved also have needs and required support. 

Limitations

There were limitations to this study. First, all six participants were able to access services and involve their families to advocate on their behalf. This may not reflect the reality of other people with severe intellectual disabilities. In addition, the input and responses were from adults who knew and spent time with the participants. Therefore, the researchers cannot claim to represent the views and opinions of the participants themselves. 

Summarized Article:

Jacobs, P., Quayle, E., Wilkinson, H., & Macmahon, K. (2021). Relationships matter! Utilising ethics of care to understand transitions in the lives of adults with severe intellectual disabilities . British Journal of Learning Disabilities. https://doi.org/10.1111/bld.12380

Summary by: Michael Ho — Michael supports the MARIO Framework because it empowers learners to take full control of their personalized learning journey, ensuring an impactful and meaningful experience.

_{Additional References:}

1. _{Foley, K.-R., Dyke, P., Girdler, S., Bourke, J., & Leonard, H. (2012). Young adults with intellectual disability transitioning from school to post-school: A literature review framed within the ICF. Disability and Rehabilitation, 34, 1747–1764.}
2. _{Tronto, J. C. (1993). Moral boundaries: A political argument for an ethic of care. London: Psychology Press.}
3. _{Löve, L., Traustadóttir, R., Quinn, G., & Rice, J. (2017). The inclusion of the lived experience of disability in policymaking. Laws, 6, 33.}

 _{Researcher Paula Jacobs participated in the final version of this summary.}