Choice making with multiple learning disabilities

Choice making is recurrent in life. We make thousands of decisions every single day. Some we make silently and act on, or not. Others we make known to others, verbally or nonverbally; 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.”

I can wake up in the morning and decide whether to get up and what I’ll do when I get up. When working, I commit to my employer and colleagues to get to work on time and be ready for whatever I do with the right equipment and resources. That ‘pressure’ ensures I continue to enjoy being employed in a job I love. So, there are decisions that are not simply to meet my own needs but also to have a positive or negative impact on others and mean I stay engaged with my community and social circles.

Some decisions in our free time are to meet our need to relax, socialise, enjoy our hobbies and interests, and maybe to ensure we can enjoy time and company with those 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 is 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 and 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 and 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 and 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 and 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 2^nd November will be a bigger and stronger Conference, building on the passion and energy 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 LDT London Exhibition and Learning Day, 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 in being responsive and ensuring people enjoy meaningful lives.