Toolkit: finding out what matters through engagement
It is possible to find out what matters to people with severe or profound and multiple learning disabilities! It is possible to use what matters to make a difference!
We all want to influence what happens in our lives, and people with severe or profound and multiple learning disabilities are no different. They have a right to be consulted about the support and services they access. It is important to embed a culture of seeking their experiences, preferences and views, and using that to influence their day-to-day lives. The What Matters to Me project demonstrated the importance and value of this direct engagement as part of consultation and decision-making processes.
We recognise that this isn’t always easy and straightforward. When people communicate through alternative ways that may be unfamiliar to others such as through signs, gestures, body language, behaviours or facial expressions, particularly when someone might use these ways inconsistently, it can be difficult to take the necessary steps to ensure they can contribute in a meaningful way.
Using the principles of engagement identified through the What Matters to Me project, we have developed a simple, practical document that can be used by family carers and support staff to share with others about how best to engage with their relative or the person they support, to find out what is important to and for them. When this is done well, the support and services the individual receives should better reflect their wants and needs, delivering good outcomes for the person and the staff supporting them.
Whilst there are many common parallels and the principles of meaningful engagement are important for all individuals regardless of disability, we have designed two separate versions of this tool with examples focusing on severe learning disabilities, and profound and multiple learning disabilities (PMLD).
Who can use this tool
This simple document is designed to be used by family carers, support staff, or anyone who knows the person well enough to advocate on their behalf and share and support what is needed to engage with them in a meaningful way, to find out what matters to them.
How to use this tool
Based on the six principles of engagement identified through the What Matters to Me project, this short form is designed to help those engaging with a person with severe or PMLD explore these principles in an individualised way, to understand, consider and put in place the steps needed to ensure that engagement is meaningful and has a positive impact.
Under each principle there are some examples of the things this could cover as well as some example responses. These are not meant to be exhaustive and can be added to or tailored to the individual and their needs. This document should be used to compliment other written plans such as communication plans and are not designed to replace these, the contributions to this document are specific to planning and carrying out engagement activities.
When to use this tool
This tool can be completed by family carers or people who know the individual well, it could be used to assist others, who may be less familiar with how the person communicates their wants and needs in situations such as:
- To support with gathering input for Education, Health and Care Plans (EHCP)s
- To support Social Workers carrying out assessments
- To support Personal Assistants or new staff in residential or educational settings and day centres
- Alongside Hospital Passports in healthcare settings or in transition planning