Within Issue 101: Listen and You’ll Hear Me

Being in control of our own lives and being heard is central to everyone’s wellbeing, achieving self-determination and having a good quality of life. People with PMLD are particularly vulnerable to acute discrimination in all sectors of their lives and require support with a myriad of issues in a range of ways such as advocating on behalf, supporting with complaints, and challenging access so that equality of opportunity is ensured, and human rights are strengthened. The Core and Essential Standards for people with profound and multiple learning difficulties (Doukas et al 2017) recognises the key role of advocacy in their lives in partnership with family and friends and the importance of developing effective understanding of communication so that people are meaningfully included.

The Spring 2022 issue of PMLD LINK will explore ways of supporting people with PMLD to be listened to and heard, and how we involve people in decision-making – about day-to-day life choices, and the bigger issues like where to live, who to live with, and serious medical treatment. The following are suggestions, but if you have any other inspiring ideas or burning issues, we would equally love to hear from you.

  • Are you a parent, family member or practitioner, and have an important story that you would like to share?
  • Do you work as an advocate or on behalf of an advocacy service? What key issues, challenges and solutions do you face with supporting the voice or rights of people with PMLD to be upheld?
  • How do you include people so that they have a sense of belonging and have a voice and representation in their local communities?
  • How do you involve people with PMLD in their daily lives?
  • Do you have any reflections on supporting people with PMLD in decision-making, and how you overcame barriers?
  • How do services support te voice and agency of people with PMLD? Are people really included, and if not, why not?
  • What are the challenges and ways forward to ensure that the rights of people with PMLD are upheld and championed? recognised and promoted?

In addition to hearing the above, we also welcome more general articles. If you would like to discuss a potential idea for an article or have a news piece to share, please be in touch.

Guest Editors ‐ Michael Fullerton, Martin Goodwin and Becky Loney

Send us your articles, stories, news items, relevant information or resources. All contributions by Friday 18 March 2022 to: info@pmldlink.org.uk; or Michael.fullerton@achievetogether.co.uk ; or  imartin1978@icloud.com