Two years have passed since our last conversation. At the time, you described how just two months into the pandemic, the effects on children with disabilities and the assistive technology industry were already palpable. What is your assessment of the current situation pertaining to the supply of pediatric auxiliary aids and services?
Christiana Hennemann: The COVID-19 pandemic has had a drastic negative effect on the overall financial situation of (German) health insurance companies. They are facing large budget holes, prompting the current discussion on everything from proposed premium rate increases to tax financing as ways to ensure adequate funding of the statutory health insurance system. In light of these issues, providing children with assistive technologies and therapies may just seem like a drop in the big "cost bucket". However, the supply of auxiliary aids and services is the only real adjustable parameter when it comes to the responsibility of the health insurance companies.
Hospitals and pharmaceuticals make up the lion's share, allowing no wiggle room since everything is firmly negotiated. That is why we and the Sozialpädiatrische Zentren (Social Pediatric Centers, SPZ), which prescribe and assist the provision of pediatric disability aids, strongly condemn the current claim rejection practice of the health insurance companies. In complex care settings – referring to children with severe and multiple disabilities and a profound need for assistive technologies, which continuously changes as they grow and develop– we noticed that nearly every claim is initially being denied by many health insurance providers.
Most parents appeal the decision. All parties must then submit additional arguments and justifications. At this point, the so-called Medizinischer Dienst (medical service of the health insurance companies) gets involved, which in nearly all cases, makes its decision based solely on the case record without ever meeting the child in person. This is subsequently followed by yet another rejection or an insufficient alternative care arrangement suggestion, resulting in further appeals. Ultimately, the children still end up with the disability aid they should have received in the first place. This process means parents waste valuable time and energy, leaving them exhausted. It also affects the siblings and wastes the time of doctors and therapists who must write reports justifying the need for aids instead of spending this time providing valuable "hands-on" care for the child.
For the young people, it means the window of opportunity for their development may forever close, causing them to suffer an additional impairment for the rest of their lives. That's why we teamed up with a mother, several physicians, and a family member action group to start and support a petition, which was signed by over 55,000 people and has been before the Petitions Committee of the German Bundestag for a year.