Doctor family starts petition: Korbinian’s parents fight against cash: “No other patient group has to justify itself in this way”
Thursday, November 26th, 2020, 10:10 am
Little Korbinian is born severely disabled. His parents Carmen and Thomas Lechleuthner fight every day to make his life easier. But the responsible health insurance company does not make it easy for the couple of doctors: A story about the absurd fight against the payers and how Korbinian’s parents want to defend themselves now.
Korbinian is only three and a half years old and suffers from severe infantile cerebral palsy with epilepsy. For reasons that are unclear, the boy suffered severe brain damage at birth and is therefore still physically at the stage of development of a newborn. Particularly tragic for the parents: they are both physicians themselves – but can hardly help their youngest.
The bright blond from near Pfaffenhofen (Bavaria) can turn and move his body a bit, but without help he cannot hold his little head. Korbinian can neither sit, crawl, nor speak, and is dependent on aids and many medicines. Nevertheless, he participates in life with full strength and communicates through facial expressions and sounds.
Family with handicapped children have to struggle with health insurance: “His wheelchair has no wheels”
Korbinian is the youngest member of the family of six from Pfaffenhofen. His mother Carmen Lechleuthner says: “Our child is seriously handicapped, but we love it as much as our three other children.”
Caring for your severely disabled child is emotionally and physically draining on the family. But in addition to this, the Lechleuthners also wage a permanent fight against health insurance. Time and again, services that make life easier for little Korbinian and that are prescribed by proven experts are rejected for “completely absurd reasons,” reports mother Carmen in an interview with FOCUS Online.
For example, due to his physical limitations, Korbinian needs a special therapy chair for attending kindergarten. This was approved for the family – but not the matching special bikes. So it happens that the three-year-old has been lying on the floor in kindergarten since September.
Although he cannot swallow, 3-year-olds only get medicine in tablet form: “We are exhausted”
Another example: Since June, the boy has had to be fed through a gastric access. The reason for this is the child’s impaired swallowing reflex. Korbinian is always in danger of choking. In order to be able to sleep through the night, the child urgently needs medication – but these are only reimbursed by the health insurance company in tablet form, which makes no sense at all in his case.
In the meantime, the Lechleuthners have achieved reimbursement of costs, but this is only valid for a limited time. “That means the fight will start again soon,” said Korbinian’s father Thomas.
The blockade attitude of the payers makes the everyday life of the family of six even more difficult than it already is. Every purchase, every excursion is a challenge. The days are closely timed between occupational, logo and physiotherapy. There are regular visits to the doctor and hospital stays. A constant excessive demand that is reflected in the parents’ faces. “We are sad, desperate and extremely exhausted”, Thomas Lechleuthner sums up.
Mother and doctor: “Many families experience such arguments”
As a doctor at the Children’s Palliative Center in Munich Großhadern, Carmen knows that Korbinian’s case is no exception. “Many families with seriously ill or disabled children experience such stressful disputes with the payers.” The doctor is angry – also because the health insurance companies actually get a so-called risk structure compensation for taking on disabled people.
These are state subsidies that the health insurers receive so that they are not at a disadvantage compared to other insurers if, for example, one insurer takes in many seriously ill people. “How much this money is, I have not yet been able to find out – but the amount is not insignificant,” says Lechleuthner.
The medical service of the health insurance companies (MDK), which is used for expert opinions, is often only used as a reason for the desired rejection, the anesthetist is certain. She is particularly annoyed that specialist therapy decisions are being undermined, withheld from those affected, or unnecessarily delayed. “At the checkout you are reduced to one cost factor, but such an expert report always costs money,” says Lechleuthner.
“No other patient group has to justify itself in this way for the costs incurred”
The family is angry – and like many others they feel deprived. “No dialysis patient has to pass an examination of the economic efficiency, necessity or expediency of his dialysis at the health insurance company. No other patient group has to justify the costs incurred in this way,” complain the Lechleuthners.
The family asks itself: “How should a health insurance employee or a doctor from the MDK who is not a specialist know more about the necessity or expediency than the treating doctor himself?” As doctors, they demand “that doctors should be trusted not to prescribe unnecessary wheelchairs or the like”. Because the real task of the health insurers is still to “help seriously ill people”.
Health insurance: Korbinian’s parents are fed up – and start a petition
After years of fighting with the payers, Korbinian’s parents are fed up with it. As parents and medical professionals, they want an end to the constant questioning of medically prescribed therapies and have launched a petition. Thousands of supporters were found just a few days after publication.
The demands of the open petition
Carmen and Thomas Lechleuthner from Niederscheyern, themselves medical professionals, have been fighting over aids with the payers for years. Your Open petition “Stop the blockade of health insurances in the care of severely disabled children / adults” found thousands of supporters just a few days after it was published on the Internet. The demands are:
- no systematic questioning of medically initiated therapies or prescriptions by health insurance companies
- direct assumption of costs for prescribed aids
- Without exception, the cost of medication prescribed by a doctor is covered
- no expert reports from other fields by the MDK
- no reports only based on the files
- no delay in therapies due to long processing times by health insurance companies
- Reform of the MDK: Because the medical service is financed by health and long-term care funds, a conflict of interests arises.
So far, ten percent of the necessary quorum of 50,000 signatures has been achieved, which the Internet platform www.openpetition.de makes a prerequisite for requesting a statement from the addressees (health insurance companies, MDK and petitions committee of the Bundestag). That is why the initiators try to make more people aware of the issue.
Living with a disabled child: “We are not interested in dolphin therapy”
The Lechleuthners are not interested in their sick son “now receiving dolphin therapy or expensive alternative medicine,” as they emphasize. “I’m talking about a car seat in which Korbinian can keep his head stable, or about means of communication with which he can get in touch with his surroundings. I’m talking about aids that encourage him to practice important skills such as grasping with his hands or about urgently needed adjustments to his therapy chair, ”says mother Carmen.
The Lechleuthners often have to struggle to achieve these and many other simple things, sometimes with the help of lawyers. Now Korbinian’s family is hoping for the success of their petition – and then for a slightly easier life.
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