Another episode in the running joke of administration - Dutch style. As you may remember we had some trouble (to say the least) of convincing people before hand but we thought it was all sorted now... How wrong can you be.
I'll first explain a bit about how it works in the Netherlands, or more accurately how it is not working for us at least. If you are chronically ill or handicapped you are entitled to get help. The amount of help is dependent upon how much help you need doing your day to day things, compared to a normal person (or baby/toddler in our case). You have to apply for the help, and your case gets reviewed by a specialized institution, the CIZ. Now we had some trouble with them, getting the right amount of care, as they underestimated Noah's condition.
The CIZ writes a document stating how much help you are entitled to, and specifies the number of hours of care, or home cleaning help or transportation or whatever you need. This document goes to the next bureaucracy, the 'Zorgkantoor'. They then ask you if you would like them to provide you with the care (natura), or would prefer to arrange everything yourself.
We opted to arrange stuff ourself, so we can pick nurses, and arrange when and how the care is done. Also this allows us to pay Louise and myself a bit for the nursing services we do ourselves.
The usual procedure is then that the amount of hours is multiplied by an hourly rate (more for nursing, less for cleaning, etc..) and the grand total is your budget to hire nurses and carers with as you want. Here we are now running into trouble.....
To make sure that the healthcare system is efficient, you can only ever get 300,- /day, because otherwise it would be cheaper to send the patient to the hospital. Fine, fair enough. Unfortunately Noah cannot just go into any hospital, he needs an intensive care in a specialised university hospital. Which costs about 1500,- euro/day is what the nurses there told us.
We told them this, so they upped our maximum to 350,- euro a day, so we would get all the hours paid to us.
Now we are getting a lot more hours, because finally the CIZ has sorted out their paperwork, and made the right estimation of what care Noah needs. They send this new document to the zorgkantoor, who send us a new budget, taking into account the maximum of .... 350,- euro/day......
So the net result of writing letters, getting doctors reports, having hospital staff, nurses and quite possibly God himself calling the CIZ to get more care for Noah is exactly......0 (yes zero) euro/day.
And of course the @£$%heads at the zorgkantoor tell me that i should have opted to let them provide us with carers. Like we want even more people in our house. Like we would want to turn Noah over to people who got hired at the lowest possible price by idiots who work in that office. Like we we want to have a seriously ill child instead of a healthy one.
All I have to say is, don't leave me alone in a room with one them and a sharp object. Or a blunt object. Or even a stapler. Don't leave me alone in a room with a bottle of whiskey either by the way.
Any way done boring you all, so I'll throw in a few good bits. Noah is getting his first molars (kiezen in Dutch), the first two on the bottom are a bit through. You can see one in this picture, if you can zoom in far enough.
Of course it is getting difficult to find a picture without his hands in his mouth. Still, he sitting better and starting to stabilize himself with his hands when he threatens to fall.
We got it! A smile on camera!
Since we are now sitting on the floor on his blanket very often the couch is empty for Lilo to occupy. Of course in style, as a proper princess. We knew those lambskin cushions would prove useful.
So enjoy, and we'll update again soon,
Thijs
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