Telehealth for disability management: what really matters?

Abstract

The need for social distancing, isolation, quarantine, and ultimately lockdown due to COVID-19 has presented a major challenge to the field of neurodisability, for which personal interaction has always been a key element. These restrictions have resulted in many services being transferred to telehealth consultations. Does this way of working fill an enduring need and what can be learnt from it? The question of ‘What really matters?’ should be uppermost, whether it be about service delivery for those in the education and health sectors, or the basics of life, family, and work practices. Remote delivery of services has longevity in my home country of Australia. Inspired by the Royal Flying Doctor Service (which used radio as its contact medium), School of the Air was the way in which children were educated in the far-flung outback and rural communities, over millions of square kilometres. More recently, technology has replaced radio to enable online schooling and has extended to health service delivery with online consultations and advice routine process for remote areas. With COVID-19, ways to deliver neurodisability therapy services online have had to be found, and professionals also had to grapple with the need to adopt personal protective equipment (PPE) in their face-to-face sessions. For the new parent of a high-risk infant there could be heightened anxiety on receiving bad news from professionals in head-to-toe PPE, where the empathy so often conveyed by facial expression and body language is absent. For the families of children with neurodisability, telehealth might simply seem too hard as they are juggling the needs of home schooling, social issues, and mental health. Therapists at KidsPlus Foundation (https:// www.kidsplus.org.au/) report that 80% of the families embraced telehealth during lockdown, and that therapists appreciated being able to easily access the home environment in real time to best optimize functional goals. Telehealth has given those families flexibility and choice in how they receive services and will now be an integral part of service delivery. Discussion has also centred on the identification of the essential skills required by therapists to deliver this type of remote service. There has been an ongoing conversation over the last 10 or more years about what therapy works best for children and young people with cerebral palsy—and of course there is no one answer to that. Clearly, a combination of strategies that address the objective of what really matters for each child and family to ensure optimal participation in life is needed. The greatest lesson I learnt from my Bobath training in London was that what you do is not the most important thing, but why you do it. Equipped with an analytical ‘how and why’ approach to typical development and the framework of the International Classification of Functioning, Disability and Health, the therapist applies critical powers of observation, analysis, and interpretation, to what the person can do and wants to do but finds challenging. From that, decisions are made about what is possible and essential to enable optimal participation in daily life now and in the future, always in partnership with the child and family. For effective telehealth this analytical collaborative approach is essential. Telehealth is here to stay and will be an option for families in their choice of how they receive services. There are many positives to telehealth that merit its continuation, while at the same time recognizing that it is not the answer for some families. What works best and for whom is an ongoing quest, and whichever mode of delivery is offered the question of what really matters for the child or young person and their family is key to the achievement of best outcomes.