twelve - When informal care becomes a paid job: the case of Personal Assistance Budgets in Flanders

Summary

Introduction

In Flanders (the northern region of Belgium), Personal Assistance Budgets (PABs) have been introduced for disabled people. PABs are cash payments that allow the recipients to employ their own personal assistants. Interestingly, no distinction is made between informal carers and other (unrelated) personal assistants. Under the scheme, relatives have no independent entitlement to financial compensation in respect of the care they provide, but must enter into a legal labour relationship with the budget holder. The PAB scheme is very similar to the Dutch personal budgets described in Chapter Ten.

This chapter examines how the PAB arrangement works in practice and the consequences for paid informal carers; where possible comparisons are made with the non-relative personal assistants who are also employed by budget holders. It begins by outlining a typology of arrangements for long-term care that sets PABs within a wider context. After brief descriptions of the PAB regulations and the design of a recent study into the operation of PABs, the chapter describes the profiles of budget holders and the people they employ. It then considers the principal reasons and motives for both parties to enter this paid caregiving arrangement. The chapter then describes the overall patterns of care received by the budget holders and the role of their paid caregivers within these wider patterns of support. Finally, the chapter discusses the outcomes of the PAB from the perspectives of budget holders and their paid carers respectively.

The Personal Assistance Budget: a hybrid scheme

According to the Independent Living Movement, systems of support for disabled people have traditionally been too driven by providers’ perspectives. In the 1960s, groups of disabled students in the US began to organise themselves and arrange their own support services. Centres for Independent Living soon developed and spread the idea that support arrangements should start from the aspirations and preferences of the disabled person, rather than from the often patronising and disempowering assumptions of care providers and professionals (Waterplas and Samoy, 2001). (The social model of disability and its success in challenging traditional professional practice is described in more detail in Chapters Sixteen and Seventeen.) The independent living perspective argues that disabled people themselves should be able to recruit, select and supervise those who provide their support.