And the solution is called care service. Read more here. LOL. Read more here. Well.
Reading time: approx. 11 minutes
That's how it was back then, in the middle of 2020. Three years ago now. The plan had been in place for some time. It was clear that it would happen. What else could it be? Nevertheless, I delayed it. Everything that doesn't have to be, doesn't have to be. A question I would ask myself several times in the following months, whether it had to be. Don't get me wrong, I think the German system of statutory health insurance is one of the best in the world. Anyone who claims otherwise, please show me a better one and justify it. But when it comes roughly to responsibilities and the assumption of costs, as a person affected you learn pretty quickly that not everything is structured quite logically here. So illogical, in fact, that even the suppliers themselves give you false information. Time and again, even approval procedures that are finally granted without any problems are delayed only because the application was submitted incorrectly. Or an outdated application form was used. Or. For reasons. Anyone who thinks the German financial system is complicated needs to take a look at this.
Let's just take my care level relevant costs just from this short story of how I got my first care service (read about it here).
There's my wheelchair. It's covered by the insurance. Well, theoretically. We don't know which fund. My guess is the nursing care insurance. The letter of approval says "AOK-80266 Munich". Whether Health insurance or Long-term care insuranceWe don't know anything for sure. By the way, this only applies to the first wheelchair. So, theoretically. I have ALS. A disease whose main symptom is muscle atrophy. Unfortunately, I don't get very far with the "cash model" of a wheelchair. Well, not far in the sense of seriously not far. I had two possible models here to try out. If I can't even manage to roll from my desk across a parquet floor to the toilet without help, how exactly do you envisage this happening in six months' time? Outside? The 800 metres from the office to the physio? The disabled parking permit would allow me to drive. Theoretically. Unfortunately, I only got a parking space in front of the door on rare occasions. There was no shortage of three disabled parking spaces directly in front of the practice. Unfortunately, the only car with a disabled pass I ever saw there was my own. By the way, in my case, you can get the pass from the Community of Grünwald. The practice of writing up parking offences does the Munich KVR. Theoretically. If I want to report a parking offence, I am supposed to contact the Police turn. But she really has better things to do. I was advised to look into the problem of the City describe. Well.
Let's go back to the wheelchair. There is help. Materials like luminous metal and carbon side rests. I can cope with the test trolley straight away. I'm even able to fold the wheelchair independently while sitting on the sofa and move it to the sofa next to me. Important steps to stay mobile with the car. Finally we have a workable solution. Theoretically. But there is a catch. The health insurance doesn't pay for that. Sure, why should I? It's not like it's a tool I depend on. So much so that I buy it myself. We find a way to have the costs for the simple model covered. I "only" pay the difference. That was the case with the first wheelchair. When it becomes untradeable for me, a lighter model is needed. The solution for the Every ALS patient's everyday problem exists. We reduce the almost 7 kilos of light metal wheelchair to 2 kg. A full carbon wheelchair is needed. Theoretically. You guessed it.
Long-term care insurance is not an all-inclusive offer.
That's what I was told by the AOK. It's really upsetting to have to deal with statements like that. I forgot that it's "The Health Insurance Fund". You'd better not get sick. Wink smiley. For my Pantherra X wheelchair, at any rate, after tough negotiations I "only" got paid just under € 8,000, yes exactly, I. Then came Corona. With Corona came the first lockdown. And with it the final storage place "basement". You don't happen to know anyone who knows someone who could use one of the lightest wheelchairs in the world? Practically new. 8,000 for a bit of hollow fibre. Yeah, well... I guess it's like Burberry bikinis. The less material, the more expensive.
Funny story on the side. Initially, I used a walker in the office. Self-procured. If I use it for the office, the cashier is out. The only responsible person is the Employer. Or me. Which makes no difference. After all, it's my own company I'm employed by. Or what. It's a bit like converting my car. Of course I drive it to work. And suddenly the employer is responsible.
At least the electric scooter was adopted. The basic model, of course. It already stops at the mandatory seat cushion. I have one from the other wheelchair. It has different dimensions and the weight distribution is completely different, but the insurance company has experts who can assess it better than I can. What do I know? I'm not an expert. In order to avoid the discussion, I have taken the cushion and all the other special equipment from the other wheelchair. self-paid again. At that time I had completely different worries. The inevitable sale of my flourishing company, just one example.
Next. Three planned hospital days later. I get new aids. They are a ventilator and a cough machine. In contrast to the care I receive in hospital - I am allowed to yourself pay - the AOK is clearly responsible for that. So, one of them. And, you guessed it. Theoretically. Everyone is their own best friend. Of course, a salesman, pardon me, consultant slash respiratory therapist slash whatever in the service of my aid supplier is anxious to sell as many new devices as possible. Now, there is something, however, that Pool query called. ALS patients, for example, usually die under your feet within three to five years. The devices last longer. And because health insurance companies don't pay realistic market economy prices, but apparently think it's cool to pay seven euros for a bottle of distilled water instead of fifty, they have to save money. Scurrilous lunar prices are being charged. How do I know that? Because I use non-invasive ventilation (NIV). I pay for the necessary aqua for the humidifier myself. According to the health insurance, this is "Luxury", not necessary. Weaklings, really true, a complete misstatement. Any specialist can confirm this. Anyway, the water is only paid for by the insurance company in the case of invasive ventilation (cannula instead of mask). Not only theoretically. Identical humidifier, exactly the same water. No kidding. I'm not saying I understand it. But I don't understand it. What does someone do who can't afford it? Even though I order from an online health store on the internet, the water alone costs me thousands of euros over the years. According to the order history in the web shop, 1,124.24 euros every year, to be exact.
By the way, it's not just the water for the humidifier. I also pay for nappies, mouth care sticks, compresses, blankets and much more myself. So, everything that exceeds a thousand euros a year, because until then, the Free State of Bavaria within the framework of the State care allowance. Why does it stop at a thousand euros? I have no idea. Let's be glad that there is something at all. Because that is Not federally regulated. It would be absurd to believe that care is a national issue.
What was the water for? Ventilation, right. And the cough aid from the same provider, we're still arguing about that. Once again, there's a catch. For such expensive equipment, the AOK equipment pool has to be consulted first. It turned out that there are suitable devices available. That's stupid. You can't sell anything. I assume, quite maliciously, that the salesman will then receive fewer Vertripspumpte. Why else would he have lied to the AOK about the possibility of reapplying to me? Lying is such a harsh, reproachful word. I can't think of anything more appropriate. It can't have been an "oversight". After all, he confirmed all the fairy tales even to me when I confronted him. Once again, I almost burst my hat as everyone involved passed the buck to each other. What a kindergarten. My supplier claimed until the end that the "Astral 100" offered by the AOK was not compatible with my breathing mask. It had to be the latest "Astral 150", of which - what a miracle - none was available in the pool. The cashier stuck with it. The request was not granted. The provider also stood by his opinion. The device offered by the AOK did not fit. Only when the patient once again told everyone what he thought and threatened to sue and change suppliers did one party buckle. I can get really mad about things like that. Since then I've had the older "Astrahl 100". And shall I tell you something? My masks work perfectly with it. How stupid do you have to be not to admit a mistake after the first query. The compatible systems are listed on the manufacturer's website. You really don't have to be an expert to read a simple compatibility list. But apart from weeks of competence wrangling that denies the ICU patient who needs ventilation the ventilation prescribed by the doctor, what do I know? after all, I'm not an expert.
The home office with a 49″ monitor that towers over the edges of my 160-centimetre glass desk, two headsets for three hundred euros each, all the responsibility of the employer. Mine pays. Doesn't find the idea of employing disabled people very sexy after this experience, though. Although the manager is disabled himself. But for health reasons he can no longer work in the office every day and inevitably needs his entire working environment twice. And if he does make it to the office, then at some point only with the stair caterpillar. Well, theoretically. It doesn't have a number for aids, and the cashier refers the matter to the District of Upper Bavaria. This is because it is for Social assistance competent. An alleged case law is cited without citing the source or judgement:
According to the current case law of the Federal Social Court, the self-propelled stair crawler applied for does not fall under the responsibility of the statutory health insurance.
Yes, no, so it does, somehow it does. What I have in writing on AOK letterhead is simply factually incorrect. It's an outright lie. Again, I can't think of a more appropriate term. Entirely lost for words. I don't know how to express this in a politically correct way. It's criminal. As a seriously ill person, you're being screwed through the teeth. First the patient has to send the next preparation for a lawsuit to the insurance company, so that the insurance company can be convinced that a reference would not have been bad. They are still unable to provide one, and suddenly pays after all. Not a word of apology, of course. How many of those affected in such cases draw in court? Well.
The situation is completely different when I can no longer manage with the stair crawler and need a platform lift. Since this is firmly attached to the house - screwed on - it does not require a prescription from the doctor, but rather a Application for measures to improve the living environment. Four thousand euros will be refunded to me. But only after I have paid the full 34,000 euros. Paid in advance privately have. In addition to one thousand euros Deposit to the community of owners for the possible deconstruction after my death. Because the heirs of my paid-off ninety-square-metre flat in Grünwald will surely be starving. Oh well. By the way, that doesn't apply to all lifts, with the measures to improve the living environment. My ceiling lifts were paid for by the paid on prescription. So, in therapy. The one in the bathroom was paid for. The one above the couch too. Only the one over my bed, I had to pay for that. pay oneself. I don't want to say that this is illogical. But it is illogical.
And then there's this little thing called a care service. They're not really motivated to work for me if I don't change my insurance company. Supposedly, my AOK pays around €70,000 less than other statutory health insurers. So, I've been waiting for weeks for a receipt and a contact person at the AOK. Both were promised to me personally by the management of my nursing service. How much of this was just exaggerated whining in the end, what do I know? I'm no expert. But isn't it strange that something like this can happen at all? That two people pay into the statutory health insurance fund, but the benefits are so glaringly different Doesn't that somehow miss the point of the statutory health insurance funds? Or have I been lied to there too?
It is perfectly clear that we ourselves are ultimately responsible for a large part of this bureaucratic quagmire. Oh... not clear? The statutory health insurance system is the direct implementation of legislation. Legislation that our politicians came up with. And who elected them? We did. Those who don't want to accept this and think that they can't change anything anyway, have unfortunately not understood the principle of democracy. You learn that in primary school.1https://www.buhv.de/Demokratie-jede-Stimme-zaehlt/62-1902/Bausteine-Grundschule I know that most people see it differently, but simple mathematics says that with exactly one vote more or less, the decision is made. To claim otherwise is simply measurably wrong and exactly the attitude that has brought us to where we are today. An AFD that sits in the European Parliament for the "Identity and Democracy" group.2https://de.idgroup.eu/alternative_fur_deutschland
Guess that's the downside of democracy. Every vote counts.
