Parents of children with disabilities feel comfortable – SWR Aktuell

Parents of children with disabilities are rarely in the public eye. Perhaps because they are too busy to draw attention to their difficult situation. There is also plenty of help, workshops, embedding, etc. Or maybe not?

Approximately 30 families from the region have joined the “Holder Initiative” in Laven am Neckar (district of Heilbronn). Although their children are different, the concerns and needs are similar.

“We are asking for less bureaucracy and more support from politicians,” says Verena Sophie Nethamer, mother and member of the Holder Initiative. The parents put hope in the new Federal Family Minister Lisa Bowes (the Greens), who was sworn in on Wednesday.

Bureaucracy complicates the work of caring parents

Verena Sophie Nethammer has lived in Heilbronn and has been caring for her son for the past eight years. He was given very little oxygen at birth, which means that he is severely disabled and that his kidneys are working only to a limited extent.

“Our children have a lot of rights, but only on paper.”

In order to get simple things like a wheelchair or a place in kindergarten, you need to be a junior lawyer or a doctor. Children themselves are wonderful, they are not, it is the circumstances that often burden everyday life.

Correspondence with the authorities and health insurance companies is a veritable deluge of paperwork

Correspondence with authorities, health and nursing insurance companies, carriers, and many other files often fill many volumes in families.



Stacks of folders on the table of a family whose child has a severe disability.


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There is a temporary ID for severe disability, a temporary level of care, and a dispute over aids such as orthoses and medications or treatments. It’s not unusual for help to come months later, when a child no longer needs it or has outgrown it, says Nethammer.

We always have to explain ourselves, justify things, so as an initiative we advocate reversing the burden of proof. This means that insurance companies will have to prove to doctors and pediatric social centers that the prescribed aid is unnecessary if they refuse to pay.

This bureaucratic struggle and effort, says Nethammer, is too stressful for parents, who are already often on the brink of a breakdown and beyond.



A standing aid for a child suffering from low blood pressure.  (Photo: SWR)

A standing aid for a child suffering from hypotonia.


SWR



The risk of social decline, especially for mothers

Much support is needed to ensure that care and work are reconciled. But what if the nursing service is canceled at short notice due to a shortage of staff, and the kindergarten cannot or does not want to ensure integration? In addition, the association criticizes the lack of “care-sensitive structures” in the labor market.

Nethammer says that parents who have frequent doctor’s appointments with their children, have to go to therapy, do exercises with their children every day and miss rehab more often each year are not necessarily the first choice in the job market.

“Women in particular are often forced to give up their jobs. Some of them end up in Hartz IV. They provide unpaid care around the clock and then have to beg in the office. That’s ridiculous!”

Although the legislature has tools such as care leave, it is geared toward seniors. The initiative criticizes that it is about a transitional (unpaid) period, not about the constantly needed caregivers.

Parents demand day or night care, which was previously not available anywhere in Germany for children and young people who need care. If children who need intensive care are to get a prescription for night care, nursing services can rarely cover the necessary hours completely and so parents will have to take a significant part of themselves, Nethammer complains.



Children with disabilities (Photo: Verena Niethammer)

Treating and caring for a severely disabled child is a full-time job.



Verena Nethammer


Child care rules as central focal points

Based on the rules of care and the elderly already in place, caring parents want special child care rules at the district level with qualified personnel to help them in the bureaucratic jungle.

They are also calling for more facilities for short-term and inpatient care for children and young adults. There are so far only just over 200 in Germany, and the result is long waiting lists and high financial contributions.



Verina Sophie Nethammer (Photo: Verina Nethammer)

Verina Sophie Nethammer



Verena Nethammer


Reflections on the new family minister

The Lavigne Initiative formulated its demands in a paper with recommendations for action for politicians. They also want to send this to the new Federal Minister for Family Affairs, Lisa Bowes (The Greens), who was sworn in on Wednesday. Along with predecessors Anne Spiegel (the Greens) and Francesca Jaffe (SPD), Nethammer says, Lavigne’s parents have fallen on deaf ears.

Despite all the criticism of structures and bureaucracy, it should not be mentioned that there are many doctors, physiotherapists, physiotherapists, occupational therapists, educators, nurses and educators who are trying every day to improve children’s lives to facilitate affected children and parents. . This also includes employees of health insurance companies or authorities.

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