Giving unique insights into individual's lives, experiences, needs, and sense of character.

Promoting A More Inclusive Society (PAMIS) are no strangers to Digital Passports. In the 1990s, passports were designed by families as a way to develop paper communication booklets, allowing people with profound and multiple learning disabilities (PMLD) to tell their own stories. This gave unique insight into their lives, experiences, needs, and sense of character, all of which helped to build positive interaction and truly person-led communication. Over the years, passports became digital documents, which amplified these voices within communities, given they were unique to the individuals they belonged to. 

For people who have PMLD, and for those who need support with communication beyond that, PAMIS digital passports offer a truly person centred and citizen owned approach for people with PMLD to highlight the realities of their lives and the support mechanisms they need in place. By sensitively shining a light on their personal narratives through the medium of film and photography, the digital passport spotlights how a carer or personal assistant can meet the individual’s needs in an unambiguous way. The use of story allows the narration to be truly person centred and helps to remove barriers by growing compassion, empathy and understanding.

Designed by families, together with Catriona Jamieson as digital lead, the PAMIS digital passport has been recognised as a gold-standard resource in helping children and young people overcome exclusion. However, to maximise its potential, it requires the individuals to take the lead in showing the world what they can achieve, and there is no better way to do this than by telling a story in pictures or on video.

“It helps people include me in decisions” (Young person with PMLD)

The attitudes of those supporting the child or young person are very important. As a result, it is crucial that people are aware of the impact the passport can have in helping them understand the lives of people with PMLD. The PAMIS digital passport is a living document that grows with the child, young person or adult and if aspects of their lives are captured and recorded in the passport, then it becomes their personal life story. The passport gives them the ability to show the world who they are, what they love and how they communicate. It offers endless opportunities in capturing life stories, family histories, and anecdotal tales of important life events. It gives them a voice, but it is up to those who support the child or young person to make this a reality by not only creating a passport, but by using it for the benefit of the individual.

“Shows people what I can do and how I like things done” (Young person with PMLD)

The recent learning outputs from our ‘Seen, heard, included’ project – of which PAMIS were one of four key delivery partners – was designed to explore tools and methodologies to support the meaningful engagement and participation of disabled children and young people who have complex needs. PAMIS concluded that if meaningful consultation and engagement is to take place with the group of individuals who live with PMLD, it is crucial that an understanding of their lives is gained in order to avoid any misconceptions that might interfere with the engagement process.

The lives of people living with PMLD are very complex. But the PAMIS digital passports  provide important glimpses and insights into some of these lives, provide us with a better understanding of how to meaningfully engage and make a valuable contribution to those living with PMLD. 

You can read further reporting relating to the ‘Seen, Heard, Included’ Project from PAMIS and other delivery partners on the ALLIANCE website.

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