Why inclusion is more important than ever amid the coronavirus crisis

Your study examines how families of children with disabilities cope amid the coronavirus crisis. What are the key findings from your research?

Dorothea Kugelmeier: The study overwhelmingly revealed that many parents of children and young adults with disabilities are struggling and that they feel overwhelmed. The sudden coronavirus surge saw them scrambling as they took on extra roles as caregivers and therapists on top of juggling their responsibilities as parents and professionals. The ongoing situation has many parents feeling isolated and completely alone, revealing a clear lack of support services and assistance. To make a bad situation worse, the children also suffer as the weeks of lockdown drag on. They miss the social contact with peers and familiar caregivers and therapists. The results also indicate that some children are at risk for physical and mental health issues elevated by coronavirus-related closures. Many parents are noticing regression in their child’s development and therapy successes wrought by the crisis. We had not expected these types of explicit findings.

How has the situation affected digital media consumption in families?

Dr. Raimund Schmolze-Krahn: Parents report a significant increase in media consumption for most children and adolescents. The devices were primarily used to help pass the time, but also assisted homeschooling effort and at-home learning. Parents had very different takes when it comes the digital learning opportunities and homeschooling resources. Some deemed the options as unsuitable to support their child’s development and learning progression, while other parents maintained that this type of learning was actually very helpful. This outcome is closely tied to the type and severity of the disability. Parents also ask for more support in this setting: Many appreciate and welcome the help of trained specialists when it comes to using electronic devices.

What are the conclusions that should be drawn from the survey findings?

Kugelmeier: As mentioned earlier, families need far more support in helping and caring for their children. At the same time, many affected parents also wish for more digital learning options and support from specialists. They don’t want to be left to their own devices as they navigate the many challenges and experience significant burdens. Needless to say, this doesn’t just apply to the coronavirus crisis. Increase support is needed even once this pandemic will end.

The results of the brief survey have prompted us to now prepare a larger survey, which will also allow for more time to respond. It will focus on the actual measures the government and society can and should take to offer support. The results of our brief survey were indicative but not conclusive in that regard.

What does inclusion mean to you?

Dr. Schmolze-Krahn: For us, inclusion means unconditional and full participation in society. It also means that society must make this a reality and that it does so as a matter of course. Participation should not be something people have to continuously fight hard for at every turn. The coronavirus crisis has shed a bright light on the current state of society and unfortunately, revealed an increase in exclusion and isolation instead of participation and inclusion. One survey participant summed it up by saying, "I worry that this situation leaves people with disabilities vulnerable and renders them more invisible than ever before."