Fight to improve the social security of parents with seriously ill children

Experience parent Neeltje Staats has been campaigning together with the Knowledge Center for Palliative Care for Children for almost five years to improve the social security of parents with seriously ill children. They argue for temporary, financial support after the (sudden) cessation of the personal budget (pgb), such as after death and the right to help in looking for suitable work or education afterwards. The battle started in 2018 with a personal letter from Neeltje to Minister de Jonge and a valuable research report is now the result.

Neeltje's daughter (Bel) was mentally and physically disabled from birth and terminally ill with a life expectancy of one year. Neeltje stopped working and received a personal budget to be able to take care of Bel, so that she could continue to live at home. The PGB functioned as her income. Bel passed away on February 25, 2018. She was then five years old. That day the PGB was immediately stopped.

Why did you send a letter to the minister?

I sent my letter when our daughter passed away four months ago. I was still exhausted and slept most days during the day as well. When I was awake, there was panic about money and the future. The government seemed to think that I could start immediately, because there turned out to be no financial arrangement for families like us. I felt abandoned at that point in our lives.

I felt that I had a lot to do: work again, participate again, recover, set a good example for our other children, get on with life, pick up the thread again... But how? I had a six-year gap in my resume and I had no idea where to start. And not only me, but all of us were defeated with grief. I thought, how can they do this? The government needs to know this. I can't possibly work in this state, can I? How else can families like us ever recover?

The PGB is a great arrangement within a horribly sad situation for an entire family. It's just that the aftercare is completely lacking and something needs to be done about that. In this case, the government reasoned that the patient had died and that care no longer had to be paid for. That's actually right. But the government needs us to say that this PGB did not only concern an individual, but a child, a brother or a sister and that therefore an entire family was behind it. A family that has built up some stability and peace with the help of the personal budget with great difficulty.

The government is now also cutting its own fingers, because this group of parents also wants to return to the labor market, but I don't think it has much chance of success in a totally exhausted, traumatized state. Let this group of parents relax and help them find work and/or education.

What impact has your letter had and to what extent have you been involved in it?

My letter initially led to an exchange of letters with Minister de Jonge in which he responded in a friendly and compassionate manner, but offered no solution to me or to future parents. So then I sent my letter to all kinds of members of parliament and to various organizations that deal with the PGB and seriously ill children. In the end, the Knowledge Center for Palliative Care for Children put my letter on their website. That piece was the best read that year. The Knowledge Center also saw the problems surrounding the social security of parents with a seriously ill child reflected in their own research. Meggie Schuiling-Otten, director of the Knowledge Center and researcher Bianca den Outer wrote an opinion piece about it. This has been picked up by Vera Bergkamp, Member of Parliament of D66. The Bergkamp motion, containing the request for an external investigation into the social security of parents of seriously ill children and parents of children who have died following a health care budget, is the direct result of our efforts. I naturally participated in the survey as a parent and the Ministry of Health, Welfare and Sport also asked me to participate in the sounding board group. Of the thirteen parents, I was the only one whose child had died. I received a lot of support from other parents for the point of attention not to stop the personal budget immediately after your child dies. If their child dies, their stable financial will also stop immediately. Their situation probably confirmed to the ministry that parents need aftercare from the government.

What do you think of the result?

I find it rather encouraging that as a citizen you can achieve quite a bit and that the government ultimately listens and is reasonable. Especially now that confidence in politicians is so low. I am happy with the report . It has not become a lament and that is important because it is an improvement. The PGB is a good arrangement in itself. In addition, I am pleased that the involvement of the Knowledge Center and Minister Helder himself means that social security is widely viewed. Because that can also be at stake due to a sudden change in the indication by the insurer or because a child moves to an institution. Even then parents will have to deal with an acute stop or reduction of personal budget with all the consequences that entails. I am also very pleased that the minister also includes families in the same situation, which fall under a different law, for example under the Long-Term Care Act.

What would you like to say to anyone reading this?

Make yourself heard towards the government and insurers. And if you don't have the energy or time, seek help from patient organizations or the Knowledge Center for Pediatric Palliative Care. Governments need citizens because some of the consequences of policy cannot be imagined from behind a computer. Sometimes they really don't know any better, until they get it explained through practice. You have to experience some things to understand what it is like and therefore also how it can be improved.

*header photo was taken by photographer Rinske Bijl.