Article 19 of the Convention on the Rights of Persons with Disabilities stresses the equal right of all people with disabilities to live in the community, with choices equal to others. It stipulates that State parties shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right, and their full inclusion and participation in the community. Until 2017, the Flemish Government provided a budget for the specialised support and care of persons with disabilities directly to institutions and service providers, limiting self-determination and freedom of choice for persons with disabilities and their family members to choose the set-up of their support system. The approach entailed risks of excluding and segregating people with disabilities. In 2020, more than half a million people (598 241) with disabilities were registered by the Belgian government.

In 2017, the Flemish Government adopted significant policy changes on the provision of financial support to persons with disabilities. The budget is no longer transferred to institutions and service providers, but, rather, is given directly to people with disabilities themselves. This optimises their control over how their support is arranged and tailored to their needs. ‘Personal assistant: to be or not to be’ was designed to help families in making decisions, specifically to assess whether or not direct relatives such as parents, siblings or partners will themselves engage in the care of the person. It does so on the basis of a toolbox that helps family members to reflect critically on what it means to become and/or remain the personal assistant of a person with disabilities, including information and reflection prompts around the areas of ‘formal, financial and practical aspects’, ‘perspectives and needs of the persons with disabilities’, ‘impact on the life of the family member and their care burden and bearing strength’, ‘influence on the family system’, ‘availability of external support and formal relations’, and ‘social and societal perspectives’. The starting questions of the toolbox are the following: a) Do you want to start as a personal assistant to a family member? b)Do you want to remain a personal assistant, but do things differently? C) Do you want to (partially) quit?

The innovative aspect of the project is its emphasis on the point of view of the family members, who are also vulnerable but often have less visibility. It also recognises that the decision to become and/or remain a personal assistant is a career choice, irrespective of a family link. It acknowledges that this may be an emotional, rather than purely rational decision. The project was funded by the ESF and was implemented from 1 March 2018 until 31 December 2021, with a total budget of EUR 263 327,00. The toolbox continues to be used.   

‘Personal assistant: to be or not to be’ was evaluated by the Flemish Managing Authority of ESF through an expert panel composed of policy-makers, practitioners and other stakeholders familiar with the needs of the family members of people with disabilities. The role of the panel was to share general advices on how to further improve the project design and its implementation, as well as dissemination of the toolbox to a wide audience. Following their recommendations, KU Leuven collaborated with international partners such as Euro Carers, the European Association Working for Carers, and COFACE Families Europe (a network of 50+ member organisations that advocates for strong social policies that take into consideration family needs and guarantee equal opportunities for all families) to facilitate the dissemination of the toolbox. The project team also made sure that the products are fully accessible to people with visual or sensory impairment, through a range of graphic illustrations, etc., also on the advice of the panel.

The toolbox is available in English and can be transferred to other countries. The methodological approach is transferable, i.e. the focus on the situation of family members of people with disabilities, who very often take the role of assistant, sometimes without thorough reflection and whose needs are often invisible. Lessons include recognising the importance of addressing the need to engage with the emotions of potential personal assistants of people with disabilities and not to approach their decision-making process from a purely rational perspective. ESF funding was key to the success of the initiative, with project promoters saying that it would not exist without EU support, considering the limited means available at national level. The support from ESF allowed the project promoters to think more creatively and to develop more innovative solutions. The involvement of ESF was also symbolically important, demonstrating that the needs of families of people with disabilities are not just a particular challenge in Flanders, but a reality that concerns all of Europe and benefits from transnational exchange and knowledge sharing.