Status quo of the pediatric auxiliary aids and services supply: challenges, successes, and ideas

As children grow up and develop, their needs keep changing. If the response to their specific needs for auxiliary aids and services isn’t quick and competent, it creates problems that could have been avoided at a systemic level, says Christiana Hennemann. The international rehaKIND e. V. support association is committed to improving the situation and giving constructive feedback to policymakers, the public and other important stakeholders.

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.

Where do you see the biggest adjustment opportunities in the overall process?

Hennemann: Adjustment opportunities clearly reside with policymakers, the uncontrolled self-governance of the health insurance companies, and the Medizinischer Dienst (medical service of the health insurance companies) system. The latter along with physicians from other disciplines make care decision that are developed in competency centers in collaboration with multidisciplinary teams – merely based on case records. For example, this means a transfusion medicine doctor chooses the assistive technology for a child. No additional expertise comes into play here, suggesting that this is simply a "delay tactic" at the expense of those affected.

We were able to present these points to multiple politicians, several government agencies and ministries, the Federal Government Commissioner for Matters relating to Persons with Disabilities and various counterparts at the state level, the federal government's care representative and to many medical experts in the field. We just visited Berlin in July and it appears the topic is gaining more traction at this point. We are tenacious and sustainable since we don’t just point out the problems but also offer respective solutions that could be implemented within the system in a timely manner. We were also able to include this in Germany’s Coalition Agreement. The Action Plan for the Inclusion of Persons with Disabilities in Public Healthcare Systems will be set up between this fall and spring of next year.

The points are clear: improving care services for children with severe disabilities, removing bureaucratic barriers for families and strengthening the SPZs and their counterparts for young adults, the medical centers for adults with disabilities. Today’s children with severe disabilities live longer than ever, so we must set them up for future success and use them as a valuable resource. Considering labor shortages everywhere, we will need the great talents of everyone. The skills of young people with disabilities, for example in the digital labor market, are in high demand.

rehaKIND e.V. will host a booth at REHACARE 2022 (Hall 4 / Booth F02) and will also take an active role in the Expert Forums. What can visitors expect on-site?

Hennemann: We will be a point of contact, inform parents and professionals about our network, make therapists, rehabilitation technicians and anyone interested aware of our training courses, showcase all association activities, and connect members with those seeking guidance or assistive technologies. What’s more, every morning we will introduce daily living aids and give practical tips for everyday life in the PRODUCTS & NEWS @REHACARE Expert Forum (Hall 4, Booth H07). This will include the following topics:

• Outdoor mobility with the rehab buggy ("Rehabuggy") and car seat
• Dynamic sitting/standing
• Hygiene
• Early alternative and augmentative communication  
• Helping children using a wheelchair; power wheelchairs for small children
• Intermittent self-catheterization promotes autonomy
• Getting a driver’s license with cerebral palsy