As the Everyday Decisions project was under way, the UN Committee on the Rights of Persons with Disabilities completed its first review of the United Kingdom. The Committee’s Concluding Observations on the UK government’s compliance with the UN Convention on the Rights of People with Disabilities (CRPD) were published in October 2017. As our findings are due to be published soon, it seems like a good time to have a look at the Committee’s report in dialogue with Everyday Decisions project research findings on legally-relevant decision-making by and with people with intellectual disabilities.
The UN Committee’s report offers significant criticism of and comprehensive recommendations for the UK government in areas where it fails to ensure the full and equal enjoyment of human rights by disabled people across social, political and economic spheres. These include the failure to ensure the right to equal recognition before the law as set out in CRPD Article 12. The Committee drew attention to the prevalence of substituted decision-making, restriction of the legal capacity of persons with disabilities on the basis of actual or perceived impairment, and the lack of full recognition of the right to individualised supported decision-making that fully respects the autonomy, will and preferences of persons with disabilities. The Committee urged the UK government to reform the current law relating to mental capacity and mental health, and “step up efforts to foster research, data and good practices in the area of, and speed up the development of, supported decision-making regimes”.
The recognition of legal capacity in Article 12 of CRPD lies at the core of the Everyday Decisions project. Looking at how supported decision-making happens in everyday encounters between intellectually disabled people and their family members, peer networks, care and support staff, our research aims to understand how legal capacity can be better supported both in law and in practice. We found that intellectually disabled people receive good levels of support in the everyday choices they make about food, leisure and daily activities, and that social care professionals combine various strategies of communication to facilitate and convey support for everyday preferences.
When it comes to decisions that are considered more complex, such as financial, medical or legal decisions, however, intellectually disabled people were less well supported despite the greater needs for support that they expressed. In contrast, care professionals reported that they usually rely on substituted decisions made in the persons best interests. Given that the exercise of legal agency entails more than having daily preferences respected, this finding suggests that further development of approaches to supported decision-making in relation to financial, medical and legal matters is urgently required, and we believe that experiences of supporting everyday choices provide highly valuable insights into how intellectually disabled people can be supported to make their own decisions in more complicated areas.
One crucial point of tension between the MCA 2005 and the accounts of support that we gathered during the course of our research is the MCA’s decision-specific focus in contrast to the long-term needs that a person may have to make a decision or to gradually develop their own skills in decision-making. While the MCA formally requires “all practicable steps” to be taken to assist a person to make their own decision before they are found to lack capacity, for some care professional participants it remained unclear what those steps should include with regard to using supported decision-making in an ongoing basis. Many examples of support from our study, on the other hand, show that support structures require time, space, experimentation and repetition and should not be isolated to decisions that need to be made in a defined period of time. Furthermore, long-term scaffolding can help people build up their own decision-making skills over time and increase their control over their lives. Gareth, for instance, told us a story about how, after being taken advantage of by a previous personal assistant, he has taken more control over his financial affairs with support from a new personal assistant and tools like easyread bank statements, and what kind of a difference this made in his life:
“Well me personally now I’m in a better frame of mind of how to handle money than I was say before you came along. I have now learned a lot about how to budget things. … I know I can go out and enjoy myself now more than what I ever used to do before. And that’s a total difference.” (Gareth)
These long-term approaches to support have a significant impact upon the enjoyment of legal capacity by people with intellectual disabilities and should be taken into account to bring the MCA closer to full CRPD compliance.
Finally, it is important to note that supporting legal capacity does not happen in a vacuum but the right to legal capacity is closely interrelated with other social, political and economic rights. Under Article 28 rights on adequate standard of living and social protection, the UN Committee raised concerns about the impact of the cuts to state support and reforms of the welfare benefits system since 2008/09 on disabled people’s rights. The detrimental effects of this reduction in disability support were also evident in stories from our intellectually disabled participants as well as those of social care professionals. The challenges that they experience shed light on a major discrepancy between the need for high quality care and support and the punitive administration of welfare support and benefits. In a similar vein, other relational connections between independent living, access to the community, right to education, housing and employment, self-advocacy and intimate relationships are all at stake in fostering a CRPD compliant culture of supported decision-making, and in enabling disabled people to meaningfully enjoy the rights enshrined in CRPD.
The Everyday Decisions project findings will be published later this month, and will be posted on this website as soon as they are ready.
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