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L-R: Emily Shoesmith, Evan Gallant Harvey, Belle Butler (on hoist), Charlie Schmah. 

A quality of life tool developed by disability researcher Jenny Downs is helping to reveal the difference specific interventions can make to the lives of children and families living with disability. Now being used in two international clinical trials, the tool has helped evaluate the impact of everything from surgical interventions to a profoundly moving arts project – the Experience Collider.

In the end it was the sameness that made the difference for 15-year-old Hilton teen Evan Gallant Harvey.

As one of 30 performers taking part in the unique Experience Collider project he was, like everyone else, one cog in a perfectly oiled, breathtakingly artistic wheel – every one of them essential to the whole; each individual as important as the next.

As a non-verbal teen severely affected by cerebral palsy, using a wheelchair to get around and a communication book to converse, the experience of being on the same playing field as every other participant – those who were able-bodied and those with high support needs – was exhilarating.

“When he would get home from rehearsals we’d ask him to use his words to let us know how he felt and what he thought of the others involved. He thought it was awesome. That was the one word he would use more often than anything else – awesome,” mother Lydia Gallant said.

“This was a community of like-minded kids who just want to have fun, and that’s the benefit of it – they all got together and were involved in an activity which involved each and every one of them in an equally important role.

“Everybody had their role to play and this was exactly that kind of activity – the shared activity and the response between all the performers is what made it so good for everybody.”

By the end of Experience Collider – a collaboration between DADAA and CircusWA which culminated in three performances at the State Theatre Centre as part of the 2019 AWESOME Festival – it was clear that all involved had grown in ways that would usually be difficult to measure.

Throughout, however, Telethon Kids Institute researchers Jenny Downs, Nada Murphy and Amy Epstein had been sitting on the sidelines, closely observing the interactions between the young performers and gathering reflections and responses to carefully calibrated questions from the performers, their families, and artistic staff.

Using QI-Disability – a novel tool developed by Associate Professor Downs, Head of Child Disability Health and Wellbeing at Telethon Kids – they were able to measure quality of life for participants at multiple points in the 18-month program.

Their evaluation, released in a report earlier this year, found quality of life was noticeably boosted, increasing on average 22.7 points on a 100-point scale.

“Our main finding was that the teens’ quality of life improved dramatically over the course of participating in the program,” Associate Professor Downs said. “That reflected both their time on the program and their life when they went home. It had carryover effects.

“Another significant finding was that the teens with high support needs dramatically increased their ability to concentrate on tasks – up from only a few minutes at the beginning to up to 45 minutes of focused skills practice at a time.

“They demonstrated a clear capacity to develop new abilities within a complex creative environment.”

DADAA Director of Arts Services Ricky Arnold said the research clearly demonstrated the impact of cultural participation, not only in a recreation and enjoyment sense, but for outcomes on a social and personal development level.

“There are many barriers to cultural participation for children with disabilities, who often miss out on the important social connection, skills development and creativity and fun that other children achieve through joining circus and performance groups,” - Mr Arnold 

“Projects such as Experience Collider build confidence, self-worth, social connection, and reduce isolation. It is important that individuals are supported to overcome the barriers they face every day to participation in activities with their peers.

“It’s also important for people with disability to lead their own story-telling, and be given the space to create with others. These are unique stories in our community, and DADAA advocates strongly for the legitimate place these stories have in the cultural fabric of Australia.”

Associate Professor Downs said the findings supported the importance of running similar projects in the future, and the need for essential funding to build the infrastructure of available artistic expertise and deliver innovative new programs.

Parents of those who took part agreed, with Jay White, the mother of 14-year-old able-bodied CircusWA performer Belle, saying the experience had had a profound effect on her daughter.

“I don’t think I appreciated quite how significant the Collider experience was for Belle until the final day of the show and the days and weeks after,” she said. “She felt so empty and missed the group terribly. It dawned on me just how much she had gained from the social and physical interactions with her new friends.

“I was just blown away to see such an ambitious project come to life in a truly entertaining, professional show. I admit to underestimating just what can be achieved by those with even profound disabilities with the right support.

“I hope this sort of collaboration becomes the norm.”

Evan’s mother Lydia said such collaborations were vital learning experiences for all involved.

“I think it’s equally integral for people who don’t have those extra challenges,” she said.

“People really do develop a whole different level of understanding, creativity, motivation and insight through dealing with people that are differently abled and differently thinking.

“It’s the whole mosaic of life – you have to have a little bit of every colour in order to make it interesting.”

What is QI-Disability?

Quality of life refers to a person’s satisfaction with a composite of their life experiences. It is the sum of a person’s physical health, mental health, ability to undertake activities, and other factors in their environment.

The Quality of Life Inventory-Disability, or QI-Disability, was developed to specifically assess the quality of life of children and adolescents with severe intellectual disability (aged 5–18).

Associate Professor Downs said she was moved to develop the tool – designed in collaboration with the families and carers of individuals across the spectrum of intellectual disability – in response to the inadequacy of existing tools in measuring quality of life for those with severe disability.

“The measures that were already in place were more suited to mild disability,” Associate Professor Downs said. “This meant kids with more severe disability were being ignored, which I didn’t think was fair.

“There are many setbacks for these kids – health issues and other challenges – so there’s a critical need to be able to understand and monitor all children with disability.

“No one should be forgotten – every child’s quality of life should be recognised and I didn’t want one voice to be lost.”

QI-Disability measures quality of life across multiple domains, including physical and mental health, social interaction, independence, leisure and the outdoors, and positive and negative emotions. It can be used to monitor the impact of therapies, including new medicines in clinical trials, and help evaluate and provide an evidence base around the real-life value of different types of interventions, such as community supports and activities.

Two US clinical trials are already using the tool – each trialling therapies which hope to improve seizure control in children suffering from, respectively, CDKL5 deficiency disorder (a rare X-linked genetic disorder) and PCDH19 mutation-related epilepsy.

Following interest from researchers overseas – keen to use the tool in their own work – QI-Disability has been translated into multiple languages, including Hebrew, French, German, Danish, Spanish, Dutch, Hungarian, Turkish and Czech, and is currently being translated into Mandarin.

What’s Next

  • QI-Disability is currently being used to evaluate the role of community participation more generally in supporting the quality of life of children with disabilities.