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Making Decisions about Wills: Emerging findings from the Everyday Decisions Project

November is Will Aid Month. During November every year, a large number of solicitors offer their services to write a simple will for people who commit to making a donation to charity. Perhaps now is the time to think about making your will, or to encourage someone you know to make one and donate to charity. Finding out about this charity will-writing scheme has encouraged me to reflect on the Everyday Decisions Project findings about wills and other legally-relevant decisions.

Research consistently shows that more than half of British adults have no will,[1] and that 40% of people die without making a will.[2] There are many reasons why people don’t write wills, including for complex social reasons like not wanting to think about death, or thinking that they do not need to because they are not wealthy enough.  For people with learning disabilities, brain injuries and other cognitive impairments, the questions of whether, when and how to make a will can become even more difficult. The law relating to will making is complicated, and currently under review by the Law Commission. I previously posed about some of the main issues in that consultation that affect people with intellectual disabilities, particularly those around the legal test for the capacity to make a will. The law commission consultation on making a will closes on 10 November, so there is still time to respond to the consultation.

In the Everyday Decisions research project, some of the topics we asked intellectually disabled people and care professionals who support people with intellectual disabilities about were things like wills, power of attorney and other future-oriented legal decision-making. When we asked people about things like wills, power of attorney and end of life issues, we found that people with disabilities often hadn’t thought about what they would like to happen in the future and after they die, and that front-line care professionals sometimes did not feel able to discuss legal decisions like wills with the people they work with and support.

We think that there are a number of reasons why people with intellectual disabilities may not always be supported to make a will. A major issue is simply that people don’t like to think or talk about death and dying. For intellectually disabled people, the question of capacity or perceptions of capacity, is also a factor. Another issue that comes up is that front-line care and support professionals may not have the right skills, knowledge or experience to talk about wills: they may not have made a will themselves, or know how to go about making one. There may also be considerations around costs, particularly relating to access to independent legal advice and support that make it difficult for people with disabilities to access advice about wills. Current limited rights to independent advocacy also might not always offer intellectually disabled people the kinds of support they need to make a will, or even where a legal entitlement to advocacy does exist, financial and demand pressures on advocacy services might make it difficult for disabled people to access support at the right time.

Some participants in the Everyday Decisions project told us stories about supporting disabled people to make wills. One care professional told us about a young woman with cerebral palsy with very limited speech, who had been helped to develop her communication skills using eyegaze technology. Being supported to use this communication device allowed her to express her opinions, have more control over her life and choices, and to make her own will. Through a combination of technology and professional support, she went from having just two or three words of speech to exercising her legal capacity. Finding better, person-centred approaches to communication therefore allowed this young woman to enjoy her legal capacity.

This story brings into focus two issues that were centrally important in the Everyday Decisions project: the relationship between communication, support and decision-making; and the role assumptions and stereotypes about disability play in limiting disabled people’s rights. Supporting people with intellectual disabilities to enjoy their legal capacity involves developing nuanced methods of communication that facilitate and enable choice. Participants in the Everyday Decisions research gave many examples of how everyday choices can be, and are, facilitated and supported for intellectually disabled people.

The Everyday Decisions research findings suggest that nuanced, person-focused and multi-sensory communication techniques are regularly used to support choices about everyday matters. We think that these care, support and communication techniques can also be adapted for use in supporting people to make decisions about more complicated legal issues like wills. By looking in detail at how care professionals who provide high quality care and support value disabled people and their choices, and how intellectually disabled people describe developing the skills they need to make their own decisions and choices, we can develop solutions from the ground up that can help disabled people to enjoy their legal capacity.

People with a wide range of intellectual disabilities can and should be supported to enjoy their legal capacity. Stereotypes about what disabled people can and cannot do often play a role in denying disabled people their rights to equal treatment under the law. National laws like the Mental Capacity Act 2005 and international human rights frameworks like the UN Convention on the Rights of Persons with Disabilities help to ensure that people with disabilities are presumed to have capacity, supported to make their own choices wherever possible and always given a say about what happens to them.

These laws can only be effective if they are fully implemented in practice, and used in everyday life. The Everyday Decisions project found a great deal of excellent supported decision-making practice happening in front-line care and support contexts.  The challenge lies in finding ways to translate these already existing supportive and facilitative practices from front-line care and supports situations into wider domains, including legal services.

We are currently in the process of finalising and publishing our findings from the Everyday Decisions Project. We plan to publish the full findings from our research later this month, and will post them on this website as soon as they are ready.

Follow @legalcapacity on twitter to ensure you are the first to hear more about the Everyday Decisions project findings!

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  1. Mark
    Mark November 2, 2017

    So pleased to see this project developing and progressing.

    I am also pleased to see that the researchers found and recognised that there is good practice out there, the emphasis on nuanced communication and knowledgeable, skilled and consistent staff is essential.

    However not all people with intellectual disabilities have access to such support. That needs to be addressed.

    The conclusion: “The Everyday Decisions project found a great deal of excellent supported decision-making practice happening in front-line care and support contexts. The challenge lies in finding ways to translate these already existing supportive and facilitative practices from front-line care and supports situations into wider domains, including legal services.” is extremely important. How can we clinical folks work with others from other non-care/clinical backgrounds to support our clients and their families to enjoy their legal capacity better?

    • Rosie Harding
      Rosie Harding November 2, 2017

      Thanks for your comment, Mark. There are real challenges in ensuring that all people with intellectual disabilities have access to the support they need.

      I think that the ways forward have to be founded in a combination of sharing good practice across sectors, shifting social attitudes to intellectual disability, investment in care and support services and professionals, and some law reform and regulatory and policy changes. There will be more about all of these when we publish the full findings report in a couple of weeks!

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