The Smart and Healthy Ageing through People Engaging in Supportive Systems, or SHAPES project, is a four-year project (2019-2023) that intends to build, pilot, and deploy a large-scale, standardised open platform for the European Union (EU), integrating a broad range of technological, organisational, clinical, educational, and societal solutions for long-term, health, and active ageing. More specifically, this project looks at technology in the home and in local communities to reduce health and social care costs, hospitalisations, and institutional care of older persons.

WFDB is one of 36 consortium partners, composed of researchers, technology companies, and civil and public organisations aimed at helping older persons, across 14 EU countries and engaging with over 2,000 older persons, caregivers, and service providers. The main objective is to improve the long-term sustainability of health and social care systems in Europe and improve the independence and autonomy of older persons.

This project focuses on two main outputs:

• 15 digital solutions, such as devices or products to improve independent health and social care that are being developed and tested through collaborative approaches. For example, one tool is a robot to assist with rehabilitation activities and to support daily life, and other tools include a smart phone/tablet app of maps providing information on the accessibility of public places and businesses
• A digital platform of good practices and learning from the project, which is currently available to SHAPES partners but may be used for other purposes going forward.

Persons with deafblindness have been involved in activities to collect data, such as interviews, focus groups, and workshops, on the following areas to inform digital solutions:

• The situation and experiences of persons with deafblindness
• The barriers to accessing health and technology
• Recommendations on how technology can be used to improve health and independence
• Recommendations on how technology could be more accessible
• Testing the digital tools and solutions being developed for the project.

A number of measures were adopted to ensure the inclusion of persons with deafblindness in the project. WFDB advocated for a budget line for interpreter-guides/Deafblind interpreters for meetings and travel to ensure that the participation of persons with deafblindness was meaningful and equal to project participants without deafblindness. Persons with deafblindness worked with interpreter-guides/Deafblind interpreters to participate in the data collection activities, and some of these activities worked with smaller cohorts to adapt to the communication requirements of the group. For example, focus groups usually involved 2-3 participants with deafblindness, and workshops comprised of 7-10 participants with deafblindness.

Many of the project events were integrated so that WFDB could connect with other project partners and to raise the profile of persons with deafblindness among mainstream partners. For example, at one of the online meetings, a person with deafblindness presented on a panel while another person with deafblindness moderated the panel. WFDB also provided guidance and technical support across the project on how to make information accessible (e.g., through accessible formats) and ensured use of CRPD-compliant language. For instance, WFDB provided advice on a promotional video to improve the colour contrast and add subtitles.

WFDB hired a project coordinator without deafblindness for this fast-paced, complex project, but this coordinator filtered all decisions through WFDB’s president and regional representatives to maintain ownership by persons with deafblindness. For example, WFDB’s senior leadership selected the participants for the data collection activities to ensure diversity of communication methods among cohorts. Having a project coordinator helped to ensure activities were implemented in a timely manner, but persons with deafblindness drove the project and project-related decisions.

The good practices for including persons with deafblindness in mainstream projects learned from SHAPES include:

• The central importance of ensuring accessibility standards and reasonable accommodations, including a budget for interpreter-guides/Deafblind interpreters and information in accessible formats
• Involve OPDs of persons with deafblindness in the early planning stages, including the proposal development, to avoid making changes to the project at later stages
• Persons with deafblindness may require additional support, such as a project coordinator, to manage daily activities and communication, but they should maintain ownership and decision-making of the project
• Inclusion and accessibility should be adopted as a cross-cutting requirement for the project at the outset, in the same way as ethical guidelines or safeguarding measures are often integral to projects at the conceptual stage
• OPDs play a key role in building awareness and technical support on accessibility and inclusion measures in mainstream projects and should be allocated a budget and explicit responsibilities for taking on this role, rather than providing free advice on their own time
• Training for project partners at the beginning of a project on accessibility and inclusion encourages shared responsibility between OPD partners and mainstream partners
• Activities should be integrated with participants with and without disabilities, but some activities may need to be specific for persons with disabilities, depending on the needs of the group.

The SHAPES project has provided a platform for persons with deafblindness to come together on health and technology issues, resulting in a positive exchange with mainstream organisations, new connections and partnerships with mainstream organisations, and peer-to-peer learning between persons with deafblindness. WFDB plans to consolidate learning from the SHAPES project and produce a final report highlighting learning on project participation of persons with deafblindness as well as insights on health and technology for older persons with deafblindness.