COVID 19: A rights-based response at The Children’s Trust

Dr Lorna Wales and Mel Burrough tell us about the rights-based approach to support children and young people with neurodisability at The Children’s Trust throughout the pandemic.

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Credit: Pixabay stock image
The importance of the human rights of disabled children has come to the fore during the coronavirus pandemic and we at The Children’s Trust are reflecting on what we have learned within the context of a rights-based approach.  We hope it will be useful for readers.  At an international level we are seeing that typically developing children appear to have less clinical consequences from COVID-19. We are yet to fully understand the extent of the impact of the virus on children and young people with neurodisability and medical co-morbidities.  However, the social determinants of health may be greatly impacted and are of particular concern.  Public health measures to limit the virus spread have resulted in social distancing, family separation, and limited access to services. The result for children and young people with neurodisability can be social exclusion, reduced opportunity for play, leisure, social interaction and education.  There is a risk that this already vulnerable group of children with neurodisability will be further disadvantaged through the restrictive practices of pandemic management.  In a recent paper, concerns were raised that our response to the pandemic may be out of kilter with rights of children. At The Children’s Trust School, children and young people have complex neurodisability and ordinarily access a broad programme of health, care, therapy and education.  They move around the school and residential homes, making use of all of the indoor and outdoor resources and also have off-site access to community resources.  Many have family visits and develop relationships with the other young people they live with. Some of these activities have been restricted due to the pandemic management and safety measures.

Did the Children’s Trust make a rights-based response?

Although internationally there may be concerns about the adversity of children with disabilities, particularly children in residential care, at a local level The Children’s Trust School works hard to be a place this is not the case.  The Children’s Trust has the strategic intention to give children and young people with neurodisability the opportunity to live the best life possible. We agree with the sentiment that children and young people will be “seen and heard, responded to, protected from harms and health promoted and provided opportunities to actively participate”. The Children's Trust response to the Corona virus pandemic was a careful balance of keeping children safe while reviewing safe and essential delivery of services. The Children’s Trust School remained open for the duration of the pandemic. We continued to deliver care to all of the children and young people as safely as possible.  At times some of the children and young people needed to be shielded and the care was delivered by a small team of staff.  Some services were suspended and some were only available remotely.  The staff team quickly adapted the use of technology to offer education and therapy sessions remotely and took advantage of good weather to offer sessions in the garden.  As time progressed and we emerged from lockdown, the children and young people formed a bubble with those that they lived with and staff were allocated to work within these bubbles.   The Children’s Trust made every effort to maintain interventions and continue to complete assessments in a timely manner, remembering that children continue to grow and develop, even during a pandemic.  The Children’s Trust team maintained vigilance and responded proactively to unintended consequences of the lockdown.  We aimed to provide consistency across routines for learning and maintain a total communication approach to reduce any negative impact on wellbeing.  Children and young people attending The Children’s Trust School have limited verbal communication, therefore we listened to their non-verbal responses and we have ensured that they have been heard.  

What we did?

At the peak of the pandemic many children and young people had to adapt to the loss of familiar experiences such as participating in daily wake up groups, joining yoga in their classroom and swimming in the hydrotherapy pool. We noticed that some children and young people were missing their regular physical activity during the school day and others were feeling anxious about the changes to routines and restrictions on external visitors such as wider family members and friends.  We did not want to under estimate the impact of Covid-19 safety measures and restrictions on children and young people with neurodisability. To ensure all of our children and young people were treated with dignity and respect we considered the impact of the restrictions on social, emotional and mental health. We ensured that we monitored and reviewed communication, sleep hygiene, pain, comfort and eating and drinking. In some cases we sought and received specialist support from psychosocial professionals to address emotional and mental health needs. To support the establishment of new and changed routines, the team formulated different sensory stories. Sensory stories introduced children and young people to new covid-19 practices such as hand washing, spending time with friends and different feelings that they may be experiencing. The use of PPE was new to everyone and the sensory stories introduced the children and young people to gloves, masks, aprons and visors. Teachers and therapists offered support within residential homes as well as in school and virtually to provide consistent, inclusive input. The creation of house bubbles meant that annual holidays were delayed, therefore members of one team created a stay at home camping trip with campfire games, tents and music.   Assistive Technology enabled the children and young people to participate in everyday life as much as possible. Accessible switches meant that everyone could compete in a gaming tournament, listen to different music tracks or make smoothies in the kitchen. For those accessing support remotely we thought about household items and furniture that could be used as ramps for balloons and balls. Regular yoga classes continued outside and virtually to promote physical exercise, breathing and relaxation, with all children accessing at least a sensory based walk outside each day.

How to make a rights-based response in practice?

In future there may be times when we have to consider isolating as a family, a small residential home, an organization or even as a society. With this in mind, here are some ideas to create a rights-based response in your community.     1.    Co-produce a plan with the child and family to bring together views, wishes and feelings about how to respond to potential restrictions
  • Consider open creative communication methods to keep in touch
  • Share care plans so that they can be quickly put in place
  • Decide on frequency and method of communication with close family, extended family members and the families wider social network
  • Share technology and devices with families who don‘t have them, to support video calling and virtual learning
  • Consider familiar resources such as visual timetables, apps, objects of reference, preferred activities for all contexts to support active participation even if the child’s environment is restricted
2.    Be aware of the impact of changes to a child’s every day routines
  • Support children and young people with differences and adjustments to routines for learning
  • Create new and stable routines, offering sensory stories to prepare and familiarize children and young people with new experiences such as PPE and hygiene measures.
3.    Support children and young people’s social, emotional and mental health needs
  • Continue to offer and adapt physical activities such as sports, sensory walks, yoga during times of restrictions to enhance physical and emotional well-being. 
  • Balance protection of health with opportunity to actively participate in the community and a flexible approach to this
4.    Be aware of changes in the child’s responses, communication and behaviours
  • Be vigilant and escalate any concerns
  • Seek specialist support if required
 Learn more about rights-based approach with these resources and put our tips into practice. 
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