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Early January I contacted Stivor again for the daisy-player. They are the ones who arranged everything with all libraries and health insurances. As I got the first rejection it was them who I called first. They asked if I wanted to sent a copy of the rejection and my letter and if I wanted to keep them informed. So I called them again at the beginning of this year with the notice that the hearing by telephone has taken place and that it is rejected again. It seems Stivor has now written a letter to THE health insurance Netherlands and gave them all the names of people who are rejected for a daisy-player. They hope they can mean something for us this way, so the battle isn't over yet. She also advised me to keep fighting for the daisy-player and go to court, but fairly spoken I don't think I will do that. I am too sick/exhausted and this costs a tremendous deal of energy and stress/frustration and I don't want a severe relapse on top of the relapse I have already. It's a shame that here in the Netherlands it always has to go with so much difficulties while you have a right to have it and you deserve it to make your live more comfortable. Only because of those difficulties and always that fighting many disabled people just don't do anything and leave it be.

By the way I got a book on CD. I don't have the daisy-player yet which I will get from someone, but henk has already listened to it on the computer. As suspected the quality of the sound is much better.

What a fuss always with RIO . The inspector told me by phone that my contract of 22 hours pgb is being prolonged to March 1, 2004. This because they wanted some info from my doctors and considering the holidays they won't be finished before January 1, 2004. Meanwhile it's 20 January and this morning I got a letter of the svb-bank and it seems that my contract is not prolonged and so the money I got is based on 14 hours pgb a week instead of 22 hours. So again we had to make some phone calls. First with the svb-bank, but they didn't know anything and advised us to call the care-office. So we called the care-office, but they also didn't know anything and told us to call RIO . So we called RIO . The one who would arrange this was not reachable and she maybe would call us back that day.
While I am typing this, she calls.
She found it strange that the care-office didn't know anything, because she had sent them a letter. She would now immediately call the care-office to fix everything.
And then she said they had made a decision today about my examination *oops*.
Well some good news and some bad news and overall reasonable good news so it's a bit okay.
As for care I get class D (as they call it nowadays with pgb new style); class D means 7 to 9.9 hours of care a week… so this is more than it was (I had 7 hours a week of care).
As for household I however also get class D, so the same amount of hours, but I first had 15 hours of household care so this is a big step backwards.
However if I had it all up I have a max. of 19.8 hours pgb per week and that's only 2,2 hours a week less than it was. This decision is also for 5 years, so for 5 years no more stress of examinations.
I don't know yet what I do with this decision; if I let it be or if I file appeal. I will first talk this through with my spd-consultant (nowadays called MEE).
As for the stress which comes with an appeal I tend to let it be.
The reason for less hours of household care is that shopping and cooking isn't be done anymore with pgb. They say you have to use those services like Meals On Wheels. They don't care about the fact that this cost extra money. As for me however something like Meals On Wheels or frozen ready meals is not an option considering my many allergies and especially considering the fact that my food has to be prepared and cooked in special water (Danone Activ') because of my allergy for tap water.

January 2004

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