Last Friday, one of the most excluded groups in society – people with profound and multiple learning disabilities (PMLD) – took centre stage at an event at City Hall in London. But this needs to be only a start to improving this group’s profile.
The event launched learning disability charity Mencap’s resource pack, Involve Me, which is designed to help people with PMLD become more involved in making the decisions that affect their lives. This is long overdue.
The drive to involve people with learning disabilities in decisions that affect their lives has moved forward significantly in recent years – the Valuing People and Valuing People Now agendas and the Nothing About Us Without Us report spring to mind – and social care is now more ‘in partnership with’ rather than ‘done to’. But things have not changed as quickly for people with PMLD and the paternalistic model of care services still often takes precedence.
But Mencap seeks to challenge this with Involve Me. The pack targets everyone who comes into contact with people with PMLD, from families and carers to commissioners of services, and provides a range of resources designed to help people with PMLD to become more involved in decisions that affect them. This includes a practical guide – designed for ease of use, – as well as a DVD and other resources.
For example, one of Involve Me’s key messages deals with advocacy. It recommends that to be a good advocate requires time to get to know the person with PMLD and to understand their likes, interests and wants. As people with PMLD don’t communicate in traditional ways, this necessarily takes time – a lot of time. But, once the relationship has been established, the advocate can effectively speak up for the person concerned and get things changed.
The pack illustrates other ways people with PMLD can get their message across including video diaries showing a person with PMLD doing things they like and using creative communication, such as BIGmack devices.
Effectively involving people with PMLD is something that simply has to be done. It needs to become standard practice. It enhances the quality of life of people with PMLD – imagine if you had to do something you didn’t like just because no-one bothered to find out what you did want to do – and also strengthens relationships with care providers as they get to know the person they care for better and can share in the things they enjoy.
But it also needs to be done on a more basic human level; everyone should have the same rights to live their life as they want, and not being able to talk should not be a barrier. It wouldn’t be accepted for any other group in society, so it shouldn’t be for people with PMLD either.
