"Rehabilitation for children and young adults must keep all options open"

REHACARE.com spoke to Executive Director Christiana Hennemann about trends in child and youth rehabilitation and discussed the impact of the coronavirus pandemic on the industry sector and affected families.

RehaKIND has been championing the cause of children and young adults with disabilities for two decades. Ms. Hennemann, what general trends did you see in child and youth rehabilitation during this time?

Christiana Hennemann: Interestingly enough, one would expect that there are fewer children with complex medical needs or a disability given falling birth rates. Yet that’s actually not the case. The percentage has remained constant. Medical advances in prenatal and neonatal care have warranted the survival of a greater number of premature babies. Thanks to new treatment methods, children and young adults with severe impairments are getting older than they used to and often have a nearly "average" life expectancy. This prompted the requirements for children's rehabilitation and auxiliary aids and services to become more specific and personalized. Multidisciplinary care concepts provide a strong foundation for this. On the face of it, this isn’t always the "most economical choice", but it promotes participation and encourages more independence for those affected and their family members as the former become older adults. However, the rehaKIND association is convinced that this will keep down health care expenditures for care and hospital stays in the long run. Not to mention that it improves the children’s quality of life.

Do you also notice certain trends such as increasing digitalization or gamification?

Hennemann: Right now, virtual therapy, gamification, and the resulting role of motivation in rehabilitation are relevant and on everybody’s radar: children and young adults have been raised as digital natives and respond well to playfulness and digital tools. This gives them more incentives to embark on therapy and increases motivation. They are headed toward a playful life.

Unsurprisingly, professionals embrace the power of digitalization – starting with electronic health records to 3D body scans and 3D-printed disability aids, including orthotic and prosthetic devices. Eye-tracking and gaze interaction-based augmentative and alternative communication devices and software are now par for the course.

What makes the rehabilitation of children and young adults with disabilities so unique?

Hennemann: The rehabilitation of children and young adults is chiefly about keeping all options open – and determining the special needs for auxiliary aids and services that are crucial for personality development, self-awareness and participation. This only works by listening to the affected person, their family members and caregivers, since they often know exactly what is needed. Children are not small adults, they take time to gradually develop their skills and they grow at a steady speed or have growth spurts. That is why it is essential to check the fit and need for auxiliary aids and devices at regular intervals and – if necessary – to immediately initiate a new device or a growth-related adjustment. To do this, you need the feedback from users and their families and the trained eye of the therapist and auxiliary aids provider.

Our lives have changed drastically over the last two months. How does the coronavirus pandemic affect the rehabilitation for children with disabilities?

Hennemann: Children with disabilities are a very "vulnerable" population and have largely been forgotten by everyone. As with all children, there has been a lack of social interaction, a connection with friends, and a lack of mutual learning and daily experiences that are made in schools and institutions. This applies to all of us, not just people with disabilities: as the pendulum starts to swing in the other direction, people return to enjoy "new"old freedoms and liberties, which shows how much we are social animals by nature and how drastically social distancing has affected our well-being.

Children with disabilities lack the support they need. This pandemic is a daunting challenge for families of children with disabilities, as it requires parents to be available 24/7 doing the work of a caregiver and teacher and being the primary contact. This is often stressful for everyone and many children are already showing signs of falling behind or regression from prior therapy successes.

What feedback did you receive from affected persons and their families since the start of this pandemic?

Hennemann: We all have gotten some desperate feedback and have seen the media coverage. We simply cannot stress this aspect enough. Families of children with disabilities are at least as affected as other families, where parents suddenly have to single-handedly tackle all child care and care concerns on top of working from home for their livelihood. Child welfare and family services voice concerns about a rise in violence against children as parents often feel overwhelmed and burned out. And some worries are probably justified. After all, a child with special needs or disability is always "exhausting" to a certain degree and right now, there is no way to get quick respite care for a few hours.

How does the industry sector deal with the challenges of the current situation?

Hennemann: After the initial shell-shock and the time it took to get our bearings, life is returning to a new normal. There is still a lack of therapies and there are size limits for group gatherings, if they happen at all. Clinical facilities are now returning to non-acute care settings, while starting to help those who have recurring scheduled appointments in centers for social pedagogy. However, all of this happens slowly and very carefully, while everyone is acutely aware of the great risks.

Specialists that provide auxiliary aids and services (orthotic and prosthetic practitioners), are still slow in opening up, though everyone has been amazing in their response: many have shifted operations in teams to keep the risk of exposure to a minimum and use protective gear if available, while staggering patient visits. All of this is far from "normal" life and comes at a hefty price tag.

How has the Coronavirus crisis affected your work at rehaKIND?

Hennemann: Needless to say, we stay in touch with our members, parents, and supporters by phone or email. However, we believe it’s extremely difficult to facilitate onsite training, trade fairs, and other events in the first half of this year and summer and suspect this will take us into next year. As long as there is no effective vaccine, our target group is at a higher risk. Meanwhile, physicians and therapists have to readapt their work to accommodate children and young adults once the intense coronavirus focus has been lifted. It will take some time to get to that point. We already miss the human interaction and creative social interactions. We have also postponed our rehaKIND Congress for one year until February 2022. It’s sad, but we are in the process of creating digital platforms and ways to meet and communicate.

Do you also see a trend toward more digital rehabilitation options? Are there any resulting benefits once the Coronavirus pandemic will end?

Hennemann: I believe the Coronavirus has helped Germany as a whole to catch up on its digital homework. Besides consultation hours, which can take place via virtual visits even at short notice, exercises, courses, documentation and tracking of successful treatment outcomes are also an option with digital support services. It’s very likely that there will be more respective choices coming up in the future – however, face-to-face interaction is very important to capture an integrated view of the young patient and get a holistic understanding of the whole person. After all, the goal of these digital alternatives is not to prompt more social isolation and seclusion for our young target audience.

What do you want to see in the rehabilitation of children and the industry in the future?

Hennemann: First and foremost, I would generally like to see more attention and consideration being paid to pediatric rehabilitation. Parents made a deliberate and conscious decision to have these children and they need our support in everyday life.

Preventive health care services to avoid a worsening of the condition or disability, and primarily auxiliary aids and services that promote participation should not be associated with bureaucratic struggles with insurance providers but be a matter of course. Children and young adults with disabilities want to live a self-determined life as much as possible and need experts who have confidence in their developmental abilities. We mustn’t accept limitations and restrictions resulting from standard auxiliary aids or a lack of personalization in care all in the name of cost savings. Our society needs all children because diversity helps us to become stronger as a global community.

The ICF (International Classification of Functioning, Disability and Health) is a classification of the health components of functioning and disability by the World Health Organization (WHO). The name points out that we must not focus on a person’s deficits and disability, but emphasize the resources and abilities of each individual. Our environment must not become an added obstacle to overcome but must help counteract the effects of disability and promote inclusion. We all want to feel accepted as we are – whether or not we have a disability. It is one of the deepest needs of the human heart and requires a functioning society to accept and protect the strong and the weak.

In "An Inspector Calls", J.B. Priestley says, "We don't live alone. We are all members of one body. We are responsible for each other." This notion is mainly evident in the treatment and perception of marginalized groups, minorities, the sick and the elderly – especially when we face a crisis like the current pandemic.