Neeltje Staats is on a mission. It’s not one she chose, and not one she even relishes.

It began in 2018, when her five year old daughter, Bel, died.

Bel had been born with severe mental and physical disabilities and given a short life expectancy. The only way to take care of her at home was for either Staats or her partner to quit work.

Staats left her job to care for Bel full time. She received help from the state in the form of a PGB, a personal budget, which provides an income to family members taking care of other sick relatives. The alternative would often be expensive institutional care.

“Parents get paid for 40 hours maximum per week,” says Staats. “It’s crazy, because we work much more than that. It’s also crazy to get money for caring for your child. It’s all kinds of crazy. And all kinds of sad. But it’s a very good system in a horrible situation.”

Bel died on February 25, 2018. On February 26, the money was gone. “The day she died was my last day of income,” says Staats. “The day after, I was unemployed, in so many ways.”

Campaign

That’s when Staats began her 5-year campaign to get the government to provide temporary financial support after the PGB suddenly ends and to help grieving caregivers, many of whose lives were put on hold for years, move on.

“I want parents like us, often single mothers, to get unemployment benefits based on the number of years they’ve been caring for a sick relative,” she says. “And to get help with finding jobs or pursuing an education. They need to re-focus their entire lives.”

She started out by writing to then health minister Hugo de Jonge, who was sympathetic but not very helpful. “I was so angry,” she says. “I thought the government can’t know what it’s like until they meet someone who has experienced it. The minister gave me incorrect advice, showing that he didn’t know how this law worked in real life. I did.”

She’s since reached out to parliament members and worked closely with the Knowledge Center for Palliative Care for Children. Last year, research commissioned by the health ministry resulted in a report confirming Staats’ worst fears.

“It was not surprising,” she says. “People must sell their houses, they go into debt and need help getting back to work. And they hate the financial stress due to the death of a child. It’s all very painful.”

And unfair. According the report, parents find it particularly egregious that they don’t receive a special financial arrangement when the alternative to their care could be expensive institutionalization. “They have – in their own words – saved society a lot of money,” says the report.

“Complex”

This week, Staats appeared on the TV news programme Nieuwsuur, which had been investigating why some 80,000 people in similar situations have fallen through the administrative cracks. This is still happening despite a recent ruling by The Central Appeals Tribunal (CRvB), the highest administrative court dealing with social security, that care providers who receive personal budgets are entitled to unemployment benefits when they lose their jobs

Karien van Gennip, the minister of social affairs and employment, told the show that, along with the minister for long-term care and sport Conny Helder, they are working “on a solution that will allow us to better help parents who find themselves in such a situation. Such a solution touches on both care and social security and is very complex.”

It is complex because there are so many players in the equation: in addition to the two ministries, there’s the SVB (the Social Insurance Bank that manages the country’s national insurance schemes) and the tax office. And complex, too, because it involves two different types of contracts: one for employment (which the caregivers don’t receive) and a caregiver’s agreement that the SVB recommends for people like Staats. But that doesn’t provide them the compensation they need upon the death of their loved one.

Hurry up

Wessel de Heus, a spokesperson for the ministry of social affairs and employment, says the court ruling only applies to employment contracts and not social contracts. He says the minister is studying the “far-reaching consequences” of the March court ruling and hopes to know more by autumn.

However, legal experts told Nieuwsuur that there is not necessarily a difference in law, and it is a question of political will rather than legal obstacles. In the meantime, with the government’s resignation Friday night over migration issues, there could be new ministers to deal with come autumn.

And as Staats pointed out to Nieuwsuur, it is all just too long a wait. “What the government now expects is that you actually have to plan beyond the death of your child. That is simply too much to ask. It is really bizarre that politics are still failing us as parents and families. I do not understand that this is not being rushed. It is a harsh reality for people. Hurry up.”

She added to Dutch News: “I didn’t want to be on national television. It’s the saddest part of my life. And I’ve moved on with my life. But I want to fix it for others. For me, it’s too little, too late.”

Staats, who received financial help from her family after Bel’s death and whose partner still worked, is now pursuing a university degree in Humanistic Studies and working as a chaplain. But she hasn’t given up advocating for the families of critically ill children. “I don’t care how they fix it,” she says. “I just care that they fix it.”