Shifting the balance of power
| Pages | 3-14 |
| Published date | 15 February 2019 |
| DOI | https://doi.org/10.1108/AMHID-03-2018-0009 |
| Date | 15 February 2019 |
| Author | Jo Whaley,Di Domenico,Jane Alltimes |
| Subject Matter | Health & social care,Learning & intellectual disabilities |
Shifting the balance of power
Jo Whaley, Di Domenico and Jane Alltimes
Abstract
Purpose –This purpose of this paper is to examine the role of engagement and empowerment in
“Transforming Care”, for people with a learning disability. The aim is to shift the balance of power so that
people are able to live ordinary lives in the community, in the home they choose, close to people they love.
It shares ideas to support people to take control over their own lives and to influence the system, so that it
works with people, rather than “doing to”people.
Design/methodology/approach –The paper examines barriers and enablers to people having their rights
as citizens. So that people have as much choice and control as they are comfortable with to live an ordinary
life (bearing in mind any legal restrictions). The paper includes people’s involvement in system/service
redesign. It critiques traditional views of looking at language, participation and power. The authors have used
the language throughout which people have told us they prefer as a descriptor.
Findings –The authors present a framework for looking at the power of, and around, people with a learning
disability who have mental health issues or have displayed behaviour that can challenge services.
Originality/value –This paper offers advice on how to address power imbalances at individual level and at
organisational/system level. It looks at the language we use, the information we share and how we work with
experts by experience to ensure we can transform care and support and enable people to live ordinary lives
as citizens.
Keywords Human rights, Language, Empowerment, Social model, Coproduction, Citizens
Paper type Viewpoint
Introduction
People with a learning disability experience considerable health inequalities, much of which is
avoidable. On average, in England, women with a learning disability die 20 years before the
general population, and men 13 years (Heslop et al., 2013). Health inequalities are caused by
discrimination, poorer employment prospects and poorer health care (Marmot, 2010). There is
also a history of mistreatment of people with a learning disability within the National Health
Service (NHS) leading to early death (Mencap, 2007; Department of Health (DH), 2012; Heslop
et al., 2013). In tragic service failures, such as Winterbourne View (DH, 2012) and Southern
Health, people with a learning disability needed to be treated as equal human beings and be at
the centre of their own lives. Services needed to listen to people and their families. Service
providers and commissioners needed to act on what people told them (Association of Chief
Executives of Voluntary Organisations, 2014; Mazars, 2015). People with a learning disability and
their families needed to be supported to take power and to be listened to.
Building the right support—choice and control
Building the right support (National Health Service England (NHSE), 2015a) and the “national
service model”(National Health Service England (NHSE), 2015b) show what needs to change to
enable people with a learning disability to take more control over their own care and support and
to ensure that their rights are protected. To have more choice.
Both of these documents were built on the social model of disability. This recognises people’s
“impairments”or “differences”but highlights that it is how society is organised which causes
“disability”and inequality (Scope, 2017). This is a human rights issue (Morris, 2001). In contrast,
Received 2 March 2018
Revised 23 April 2018
Accepted 30 April 2018
An easy read summary of this
paper is available at https://www.
england.nhs.uk/learning-disabilities/
about/get-involved/
Jo Whaley is Public
Engagement Manager at NHS
England, Leeds, UK.
Di Domenico is based at NHS
England, Leeds, UK.
Jane Alltimes is based at Local
Government Association,
London, UK.
DOI 10.1108/AMHID-03-2018-0009 VOL. 13 NO. 1 2019, pp. 3-14, © Emerald Publishing Limited, ISSN 2044-1282
j
ADVANCESIN MENTAL HEALTH AND INTELLECTUAL DISABILITIES
j
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