It’s the simple things. Simple, everyday things like going out to the mall and ordering a hot chocolate and paying for it with her own EFTPOS card. Simple things like using a mobile phone and texting. Simple things like dressing the way she wants to dress.
Simple things like showering herself, drying herself, doing her hair in front of a mirror with what her mother describes as “a real sense of pride”.
The NDIS has changed 16 -year old Ally’s life, and as a consequence it has changed her mother Kathy’s life.
“We didn’t realise until the new plan how much Ally had blossomed,” Kathy Spowart says.
Ally has down syndrome as well as autistic traits and sensory processing issues. “Sensory processing disorder would be the official name,” Kathy explains.
“Prior to the NDIS we were eligible for 10 hours a month respite but we really only used it if we had to go out. It was more like a babysitting service and we didn’t have a great choice of carers. There was only ever one person who really gelled with her and her brother.”
Today, Ally has a team of three terrific support workers, including one who Kathy describes as “young and trendy and cool”. The support worker and Ally are like best friends, and Kathy says she has never seen her daughter so happy.
“A 16 year old doesn’t want her family hanging off her all the time. She’s having a typical adolescent journey now. She’s finally finding herself.”
Kathy and Ally’s NDIS journey began with as part of the trial which is currently underway in the Barwon region of Victoria. The family lives in Barwon Heads, the town near Geelong which shot to fame as the location where the late 1990s TV series Sea Change was filmed.
The show Sea Change was all about lifestyle change. But it’s doubtful that any of the fictional characters ever had a lifestyle change as profound as wonderful as the Spowarts.
And that’s all thanks to NDIS.
Kathy had been an active member of the campaign for the NDIS, but her initial experiences with the new scheme weren’t as smooth as she’d hoped.
“In the beginning the rules seemed to change daily,” she says. “When initially we asked how long the planning process takes we were told it was open ended. Then we were told we only had so many meetings. Then when it was time for us to agree to a plan I thought ‘this just doesn’t feel right’.
“I suppose near enough has never been good enough for us. When you’ve got someone who may not be able to speak for themselves, it’s crucial to get the right people around them.”
That was the key issue for Kathy Spowart. She needed someone who would be more than a babysitter to Ally. She needed a trained worker who would be there often enough to take a personal interest in her daughter.
To help her cause, Kathy took the unusual step of filming her daughter on a not particularly good day in order to convince authorities of Ally’s special needs. That’s a fairly radical course of action which is obviously not for everyone, but it highlights Kathy’s number one tip in dealing with the NDIS, which is to give as much information as you can to agencies so you can help them help you.
Here are her top 5 tips for how to get started on your NDIS journey:
1. Think beforehand
“People need to do a lot of the thinking beforehand. It used to be that you went in and had a talk with a planner and they came up with what they think is reasonable and necessary. Now you have to tell them what you think you need.”
2. Detail a day in the life
“The way to get your needs across is to try and actually detail what a typical day looks like. So you’d say ‘someone wakes up at 7, requires assistance, and so on throughout the day.”
3. Think long term as well as short term
“You should also try to think and talk to others about what does a person wants out of life. Think outside the square, don’t just think about what’s out there, you have dare to dream. I would never have imagined what Ally’s doing now.”
As an example, Ally is now learning the drums with a drumming teacher. “It’s all about confidence,” Kathy says. “She never had that before.
“She is also working with an occupational therapist and a speech therapist.”
4. Treat your carers like part of the family
When Kathy met one of the fabulous young women who now cares for Ally regularly, she first sent her home to read up on Ally’s condition.
“When she came back we knew she’d done the research. We we had professional expectations that went well beyond babysitting and we’d never had that before because the whole system was so disjointed.”
5. Never forget this is about a “person-centred” approach
The NDIS about you. It’s about a one-stop process of obtaining the best possible care and quality of life for your loved-ones. Just ask Kathy Spowart:
“In the last you might have gotten a speech therapist through the education system and another carer somewhere else, and you had to deal with different agencies to get these people. It’s much more holistic now.
A final word
“Believe me, Ally is having a hell of a lot of fun that she never had before and working on goals you wouldn’t even believe,” Kathy says.
“She is finally living an ordinary life in the community or at least she’s well on her way to that. She is blossoming because she’s got choices.
“People with disabilities can have expectations of a better life now.”