We make 1000’s of decisions every single day. Some we make silently and act or them, or not. Others we make known to others, verbally or non-verbally; those who know us well can often tell even if we don’t state it!

"By truly engaging, communicating and listening, we all will be able to be much more responsive."

Personally, I can wake up in the morning and make a decision about getting up and what I’ll do when I get up. When I’m working, I have a commitment to my employer and colleagues to get to work on time and be ready for whatever I’m doing with the right equipment and resources. That ‘pressure’ ensures I continue to enjoy being employed in a job I love. So there are decisions which are not simply to meet my own needs, but impact positively or negatively on others and mean I stay engaged with my community and social circles.

Some decisions, in our own free time, are to meet our own need to relax, socialise, enjoy our hobbies and interests – and maybe to ensure we can enjoy time and company with those people that are most important to us. We can simply say “I fancy doing..." and just do it.

So, what about people with profound and multiple learning disabilities – what’s happening for the 1000’s of decisions each of those people are making every single day? Who’s recognising and acting on those decisions? And what does that mean for the person when we don’t recognise and act?

Support

The ‘Supporting people with profound and multiple learning disabilities: Core & Essential Service Standards’ (Doukas et al, 2017) provides structure to ensure the needs and decisions of children and adults with profound and multiple learning disabilities are recognised, listened, and responded to. Given that the person may often not be able to act on their decisions, someone close to them can convert their decisions and thoughts to reality. By truly engaging, communicating and listening, we all will be able to be much more responsive.

When a person is reliant on ‘paid support’ in an educational/health/social care service, the implementation of the Core & Essential Service Standards will ensure there is emphasis on the quality of relationships and interactions and, if someone with a profound and multiple learning disability is thinking “I fancy doing...” that it will happen. This can mean the difference between the person living and simply existing. So make every moment count: use the Core & Essential Standards to make a difference.

In recent years, within the learning disability sector, little focus has been paid to the needs of people with profound and multiple learning disabilities. Indeed, little action nationally since the Raising the Sights recommendations made by Professor Jim Mansell in 2010.  This has led to many families feeling isolated with fragmented support, with limited networking amongst professionals.

The development of the Core & Essential Service Standards, the PMLD Link Journal, #PMLDChat, and ‘Raising the Bar’ National Conference in November 2017 have all started to change that. There is a real appetite to ensure people with profound and multiple learning disabilities are listened to, engaged with fully and meaningfully, and are visible in and contributing to society.

Raising the Bar II on 2nd November will be a bigger and stronger Conference building on the strength of passion and feeling of last year's conference.

Join us if you can at the event. The conference programme provides a strong emphasis on consent, decision-making, and citizenship for people with profound and multiple learning disabilities. So, it's an important learning and networking opportunity for everyone involved in the lives of children and adults with profound and multiple learning disabilities.

At the LD Today Exhibition, the organisers of Raising the Bar II, myself, Thomas Doukas, Annie Fergusson, and Joanna Grace will focus on how the implementation of the Standards can assist providers and commissioners to be responsive and ensure people enjoy meaningful lives.