Tuesday, January 27, 2009

Aukje de Vries' Diary Day 10

Our long-term care system was, once upon a time, very good. It is no longer. I hear from friends and relations dreadful stories about people not getting the care they are entitled to, problems with assessments, co-payments that are very high and lots more.

The paper of the Ministry is not about that. It is about the AWBZ, the Act which regulates long-term care. The paper is written in English. Over the years there have been many alterations, the long-term care system is not very logical any more and structures and institutional relations are very complicated. Even in Dutch it is difficult to write a coherent and understandable paper about the workings of the AWBZ, let alone in a foreign language. I don’t know how good the paper was in Dutch, but I notice that the translator does not know the jargon. S/He often uses the term “implementing bodies” but my impression is, that this refers to several different agencies. There are phrases that are completely incomprehensible to me. If I do not even understand it, how can people from other countries understand this, let alone discuss about it? What is interesting is, that the AGE paper (which is very much to the point) hardly refers to the Ministry’s paper. I guess that its authors have used the knowledge they had from other sources.

In the mean time Anbo, my seniors’ organisation, has also asked me to give comments. I decide to do two things: one is to write a paper with my own, personal observations, because I realise that there are some issues that particularly worry me but that an organisation, speaking on behalf of all members, can never include in its commentary. In the second place I will write comments of a more general nature that can be used by Anbo.

Last night I have already made a rough outline of what I want to say in the first paper. I have a go at it and I get all excited while writing, there is so much I want to say. I have to look up some data because I want to be as precise as possible on some issues. I decide to keep working and have dinner a little later than usual.

Just after I have gone to the kitchen a friend from Amsterdam calls. She likes to know how my trip to London went and I tell her. She has already had her dinner, but I haven’t and I am hungry, so we don’t talk too long. I tell her about the commentary I am writing and about the diary. She thinks this will be quite a strain and says: I thought you were going to live a more relaxing life….. She is right.

After dinner and a quick glance at newspaper headlines I go back to my study. I give up going to a meeting of the Association of Dutch University Women and continue writing. It goes well. After midnight the first paper is ready and I send it off to AGE and copy Anbo in. Six pages of text in English, hopefully more comprehensible than the Ministry’s paper. Let me summarise very briefly what my points are.

The government tells us that we should rely more on informal carers. In most cases they are family members. But I happen to have no family members at all. Because of all the bureaucracy it is practically impossible to work the system and get sufficient care without carers. Has the government thought of people like me?

I have described four cases about which I heard over the last 6 weeks, where care did not work or was no longer affordable. I comment on the fact that home help (house work) has been taken out of the long-term care insurance and is now the responsibility of municipalities. What once was integrated care has been disintegrated again, it creates a lot of confusion for users. I criticise the assessment procedure. It is supposed to be independent but is completely steered by the (local) government’s guidelines. I try to figure out what the co-payments are that users of home care and institutional care have to make. I discover a very amazing fact on the website of an organisation called Per Saldo. This website presents data which suggest that people with an income of roughly € 20.000 a year or more have to pay more for home care than the actual value of the care they receive. They had better arrange their home care privately. This is unbelievable!

I criticise the quality of care (there is a lot of what we call “stopwatch care” which means that each worker is told precisely what tasks she must do and how many minutes she is allowed to use for each task) and I discuss the bureaucracy and the costs of it. I also touch on euthanasia of which I hope it will be easier to get when my final days approach.It is late when I go to bed and I cannot unwind. I don’t sleep well.

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