The added value of on-demand remote support: Experiences with DigiContact: 24/7 available support for independently living people with intellectual disabilities

Various changes in intellectual disability policies and practices encourage care organizations to look for new ways to provide their services. In their search, organizations often look at the possibilities of technology for shaping their service portfolio. One way in which technology can be used is to organize and deliver support remotely. The Dutch service provider organisation Philadelphia Care Foundation (PCF) developed and implemented the remote support service DigiContact as one component of a broader range of services for independently living people with intellectual disabilities. The service provides support for day-to-day living through video calls or regular (audio-only) telephone calls with a team of specially trained support workers. The service is 24/7 available and its support can be deployed on demand by people with intellectual disabilities themselves: whenever and wherever this is needed. Since the start of DigiContact, PCF has felt the need to monitor and evaluate the service in terms of its quality and usefulness. In this context, a better understanding of what the service can (and cannot) contribute to the lives of people with intellectual disabilities is essential. This thesis aims to gather knowledge regarding the added value of including DigiContact in a broader offer of services for people with intellectual disabilities who live independently in society. Five separate studies were performed that explored mainly the personal experiences of people closely involved in the DigiContact support process: support users (people with intellectual disabilities), their case workers (support workers who provide onsite support and coordinate services around support users), and DigiContact support workers. An inclusive approach to research was adopted, as this was expected to enrich both research processes and findings. This approach was shaped in the form of a collaboration between the PhD candidate and a researcher with intellectual disabilities. The findings of this thesis indicate that including DigiContact in a broader offer of services can be valuable to (supporting) people with intellectual disabilities living in their own homes in society, in several ways. To begin with, DigiContact contributes to more opportunities for providing people with professional and specialized support that is closely aligned with their personal needs and preferences. DigiContact can contribute to more tailor-made professional support by broadening the available support options, by enabling the provision of sufficient support and by enhancing the continuity in the delivery of support. In addition, DigiContact provides a unique entry point for improving people’s functioning and well-being; its support has been found to enlarge the opportunities for making choices and taking decisions, can help to prevent (larger) problems as well as an accumulation of stress, and can play a valuable role in the learning and strengthening of adaptive skills. At the same time, the findings also emphasize that there are limitations to what the DigiContact service can do for its users, and that it is not equally suitable for every person and situation. It is therefore not a ‘one size fits all’ service. The value of DigiContact support seems to lie often in its combination with onsite support (a blended care form), which enables people with intellectual disabilities to make decisions regarding which type of support suits their needs and preferences (in a given situation) best. In this respect, onsite support and DigiContact support can complement each other so that people can benefit from ‘the best of both worlds’. Based on the findings of this thesis, several implications for policy, practice and research are formulated. Although these implications are specifically related to the DigiContact service, they may also be of interest to other remote support initiatives and service organizations who are planning (or considering) to offer remote support.