Sometimes it takes only a moment to shake even the most solid organisation to its core. In the case of The Spastic Centre of NSW, such a time came in the middle of a December night in 2007 when fire ripped through the charity's administrative headquarters at Allambie Heights. The centre's president, Marelle Thornton, remembers the overwhelming grief felt by everyone connected with what is one of the oldest organisations of its kind in the world. "It was an absolute shock and a real emotional wrench," she says. "It was the hub for all our activities across the State."
Leanne Diviney, who had visited the Allambie facility countless times since her daughter Hannah was diagnosed with cerebral palsy (CP) seven years earlier, was devastated. "We lost a lot of information that could have been valuable for research," she says. "But having lost all that, we now have the ability to get a nice new centre that will probably function more efficiently."
This outlook reflects a new focus on adaptability at The Spastic Centre of NSW, which changed its name to Cerebral Palsy Alliance earlier this year . For Thornton, this rebranding went further into the heart of the organisation than fire ever could. "The name change was a real milestone in the organisation's history," says the retired primary-school teacher, and Member of the Order of Australia. "It was on the agenda for a very long time, because there was a real disconnect in the minds of the community around what it was The Spastic Centre did, and who they served. It was cementing cerebral palsy as an issue for the community."
Diviney agrees, and recalls the time she called directory assistance and asked to be put through to The Spastic Centre of NSW. "The woman on the other end of the line said, 'Are you serious? Is it really called that? That's a terrible name!'," she says. "It kind of threw me, but I guess unless you know someone who has cerebral palsy, you don't know that 'spasticity' is actually a medical term. It's just a term you used when you were a kid to describe people doing idiotic things. As a child, you never thought too much about it, but as an adult with a child who has it, it's a different thing."
It was a logical move, as CP is the most common childhood physical disability, but it was also an emotive one. After more than three decades with the organisation, Marelle Thornton knows only too well how the negative connotations of the word 'spastic' can impact upon a family. "It evokes awful thoughts in the minds of a young mother and father bringing their baby to our organisation," she says. "It's a pretty scary word, and conjures up things families feel will be an overwhelming challenge, that they won't be able to deal with."
Thornton found herself in that boat back in 1977. Her daughter Katie had just been diagnosed with cerebral palsy, and Thornton found it difficult enough getting through the day, never mind thinking about the future. "But then I started to notice the older mothers, all done up with lipstick and nail polish, when I didn't even have a chance of going to the toilet without making an appointment, and I'd think maybe I can make it to the end of the day, month, year," she says. More than 30 years later, while the challenges faced by people with CP haven't changed, the organisation's overall support strategy has. "There's now a greater focus on the holistic development of the child in his or her family and wider network, as opposed to what was, I guess, back in 1977, the deficit that the child presented with," says Thornton. "And there's also a greater focus on what it is that families and that person really want, as opposed to the experts - if I can put it that way - telling them what they need."
From its early years in Mosman in the 1940s, CP Alliance has grown to become one of the largest non-government organisations in the disability sector. The services it provides for families are many and varied, and include mentoring, recreation and respite programs. It has facilities in Kingswood, Penshurst, Prairiewood, Ryde and Terrey Hills, as well as in many regional areas.
Leanne Diviney mainly visits the Penshurst facility with Hannah, who was born prematurely and diagnosed with CP three weeks later. Eleven years on, Diviney can't imagine life without CP Alliance, and is effusive about the way its staff deal with her daughter. "Hannah has really great relationships with the three main therapists she uses," she says. "They are a special bunch of people."
Care extends to the whole family, and Diviney, her husband Finton, and their younger daughters Sophie and Niamh, all benefit from CP Alliance services. "It's a fantastic set-up. There are people who can help you, and you discover that you don't have to do it all on your own," Diviney says. "They try to work out what's best for the family, not just the child. We've been on holidays with families we've met through CP Alliance, and they also have great parent-to-parent support services." Seven-year-old Sophie took part in a program for siblings of children with CP in the July school holidays. "They ran a 'MasterChef' day at the Ryde facility for siblings, and Sophie had a ball," Diviney says. "On the day, they broke into groups and talked about what it was like to have a sibling who has CP. Even though she knows other kids with CP, it's the first time she actually looked at it from other siblings' points of view."
Marelle Thornton says this family approach is no accident, and that CP Alliance is focused on holding families together. "It's how you move through that rollercoaster ride of emotions that persist through a lifetime," she says. "There is no greater stressor in a family than having a child with a disability that just drains your every emotion, your every resource, financially and socially. It can be a very hard place to be. As an organisation, we want to say, 'let's help you get on track', and that at the end of the day people come out the other end."
This article was first published in the August 2011 edition of Sydney’s Child.