Subsistence security of parents with Zvw pgb for their child
For providing care to seriously ill children, some parents receive a Zvw-pgb. Providing good care is complicated and time-consuming. Parents of seriously ill children, sometimes feel compelled to (partially) quit their jobs. Financial problems can arise when the pgb decreases or stops, because the child needs less care, is admitted to an institution or hospital, or the child dies.
In conversation with parents
A choppy customer journey
The Policy Researchers, Muzus and Saskia Anderiessen investigated (1) how – within the current social security system – the subsistence security of families with seriously ill children is (or is not) safeguarded if a change or end to their child’s care needs causes an abrupt change in the amount of their child’s Zvw-pgb and thus in the income of parents, and (2) the size of this target group.
From desk research, context mapping interviews and a survey, we developed the report “Subsistence security of parents with Zvwpgb for their child” and a customer journey of turbulent journey of parents with a seriously ill child.
In conversation with parents
Pgb as a lifeline
The survey shows that some parents are well prepared for unexpected situations. They experience the Zvw-pgb as a lifeline, because they can get on with their lives independently. Another part seems to be less resilient. They too experience the Zvw-pgb as valuable, but find themselves in financially difficult situations when the Zvw-pgb ends or is reduced. There are no good solutions in social security for the subsistence problems faced by parents who can provide care themselves from the Zvw-pgb. Parents say they need temporary financial support to get out of the crisis, career orientation to get back into the workforce and experience lack of appreciation. They have taken care of their sick child (often for years), thus relieving the burden of care.
Impact of research
Publications
The results of this study were described in detail in the report that was sent to the House of Representatives with a parliamentary letter in December 2022.
Nieuwsuur discussed parents who provide care from the Pgb to their seriously ill child and sometimes face problems in their livelihood when the Pgb stops.
Trouw wrote this article about harsh effects on citizens within social security.
