Personalisation – are some people missing out?
We know that personalisation can improve the lives of people with learning disabilities. The Personal Outcomes Evaluation Tool (POET) survey found that more than two thirds of people with learning disabilities reported that a personal budget had made a positive difference to the control they have over their support. Over 60% said that having a personal budget made a positive difference to their mental wellbeing.
But, is personalisation working for everyone? Does everyone with a learning disability experience the positive outcomes of personalisation equally? These are some questions we’ve been thinking about recently at NDTi. Through our learning disability work across the country, one area we’ve become particularly interested in is the impact of personalisation for some of the most isolated people with learning disabilities. Do people in residential care or out-of-area placements have the same access to personalised approaches as other people with learning disabilities? Do those with complex/multiple needs or challenging behaviour benefit from the positive outcomes of personalisation? Do those who don’t have close friends or families to advocate for them get the best outcomes from personal budgets and direct payments?
Today we’ve published the findings of a short review of the evidence in this area. Although we didn’t find any research which has specifically looked at the impact of personalisation for the most isolated people with learning disabilities, we found a number of studies which have relevant findings.
In summary, the findings suggest that some of the most isolated people with learning disabilities i.e. those living in residential care or out-of-area placements, people with complex/multiple needs or challenging behaviour and people without close friends and family:
- are missing out on various aspects of personalisation altogether (e.g. personalised care and support plans, personal budgets etc.);
- do not have access to the support or resources to get the most positive outcomes from particular elements of personalisation; and
- are less likely to have access to advocacy - the mechanism which should be in place to address this inequality.
The limited research in this area means that these findings are tentative. We need to know more. In 2012-13 there were 35,025 adults aged 18+ in local authority funded residential or nursing care and the number of adults with profound and multiple learning disabilities is predicted to rise. As personalisation is a core element of current and future health and social care policy and provision, it is a real concern if some people are missing out.
We want everyone to benefit from the positive aspects that personalisation can bring. At NDTi we’re planning to do some further work to find out more about who is missing out and what can be done to address this. We welcome any views, comments or examples of research or practice in this area which could inform this work. If you would like to get in touch, please contact Naomi Harflett, Research Manager at [email protected] or 01225 789135.
This blog was originally published by Think Local Act Personal.
Dr Naomi Harflett is the Research Manager at the National Development Team for Inclusion (NDTi)
NDTi is an organisation that promotes equal and inclusive lives for people in their communities, particularly where ageing or disability are issues
Dr Naomi Harflett's blog is a personal opinion and does not necessarily reflect the views of the NDTi.