At the end of 2021, the PSNC, together with 5 partners from Poland, Spain, Germany and Slovenia, completed the INSENSION project, funded by the Horizon 2020 programme. This project was the world’s first attempt to create a technological solution that enables people with profound and multiple learning disabilities (PIMD) to use digital services and applications. The target group of the project was people who remain at a presymbolic level of communication – people who can only interact with their environment in a non-symbolic way. Therefore, the technology and prototype developed in the project has great potential to support the interaction of people with PIMD with others.
The potential of the system developed by the Poznan Supercomputing and Networking Center was evaluated in an experiment using its functionality by 6 children from Poznan, Poland. This was the first time in the world that such advanced ICT technology had been used by people with this type of disability.
Although the experiment was small, it confirmed that making this type of technology available to people with PIMD is an opportunity to significantly improve their quality of life while giving them the power to influence their environment.
As research shows, parents and guardians consider problems with communication with people with PIMD to be one of the most important challenges in caring for them. In a survey conducted by the LouLou Foundation and the International Foundation for CDKL5 Research among parents and caregivers of children with CDKL5 deficiency syndrome, 60% of them identified problems with verbal communication (very limited or none) as having the greatest impact on their children’s ability to participate in everyday activities. At the same time, 54% of respondents indicated their children’s ability to communicate their needs and problems as the second most important area in which they expect improvement from new therapies. In this context, the broad response of the parents and carers communities of people with PIMD from all over the world to the results of the INSENSION project shows that technology such as INSENSION has considerable potential to fulfil the expectation of improving communication abilities.
Research shows that parents and carers consider communication problems with people with GD to be one of the most important challenges in caring for them. In a survey conducted by the LouLou Foundation and the International Foundation for CDKL5 Research among parents and caregivers of children with CDKL5 deficiency syndrome, 60% of them identified problems with verbal communication (very limited or none) as having the greatest impact on their children’s ability to participate in everyday activities. At the same time, 54% of respondents cited their children’s ability to communicate their needs and problems as the second most important area in which they expected new therapies to improve. In this context, the broad response to the results of the INSENSION project from the community of parents and carers of people with PIMD from around the world shows that a technology such as INSENSION has considerable potential to deliver on the expectation of improved communication.
