Dr Jenny Downs
Families in the community are providing greater care and supervision for their children whilst staying at home during the COVID-19 pandemic.
For families with a child with disability, this involves many extra care duties especially if their child has high and complex needs.
Dr Jenny Downs, Co-Head of the Institute’s Child Disability Research Team, has conducted research for many years for children and families with disability including in the area of Rett syndrome. Rett syndrome is a rare and severe developmental disorder that mostly affects girls and is associated with complex needs.
Dr Downs was approached by the USA-based Rettsyndrome.org, the peak advocacy body for Rett syndrome, seeking ideas on how to support families who are now providing even more care and support for their child with Rett syndrome.
Dr Downs teamed up with an international group of therapists to lead the development of a resource that provides practical ideas on how to support participation in the home for children with complex needs.
“This resource provides ways for children to have meaningful involvement in all of the different daily activities that can take place in home settings,” said Dr Downs.
“It contains ideas for activities that can be done whilst families are spending more time at home including exercise, indoor play, education, household chores, and nature activities in the back garden.”
“The much-needed resource didn’t exist so I worked with therapists from Australia, the USA and Europe and we developed a resource for families with a child with Rett syndrome.”
Dr Downs said the resource could also be used by families with a child with other complex disabilities, including for example some children with cerebral palsy or other conditions such as the CDKL5 Deficiency Disorder.
Dr Downs and her Disability Research Team have a vision that children with disability will live with a good quality of life and hope that this resource supports children with complex needs and their families to live with a good quality of life during these extraordinary circumstances.
The resource can be downloaded here.