People with disabilities are bearing the brunt of the National Disability Insurance Scheme’s teething issues, with many struggling to get access to assistive equipment, such as walking frames, wheelchairs and software.
Last week, the agency that administers the scheme, the National Disability Insurance Agency (NDIA), apologised to the family of a Tasmanian man who died while waiting for a specialised bed.
Experts say the NDIA needs to focus more on individual needs.
‘Devastating’ delays hindering kids with disabilities
Thirteen-year-old called Katinka is desperate to stand and walk, but she needs help to do it.
“We found this walker, and the day that she trialled it, she was the happiest that I’ve ever seen her in the four years I’ve known her,” Heather Richmond, her physiotherapist, told the ABC’s AM program.
“And she just kept saying, ‘Look, I’m standing, I’m walking on my own, I can do it’.”
That equipment was trialled a year ago, but Katinka still doesn’t have a walker of her own.
“Since then she’s been asking her family constantly, her school: ‘When’s my walker coming? When’s my walker coming?'”
The walker Katinka has applied for costs $6,000.
Heather Richmond says it is a reasonable and necessary piece of equipment for her — but the NDIA has rejected her application to get one.
“As therapists, [we] go to university and have all this clinical experience in order to know what is the best for a certain client,” Ms Richmond said.
She said it is frustrating to have recommendations declined.
“We put the time and effort in to trialling equipment and supports, and then it just takes one person to say, ‘No, I don’t think so, I don’t think it’s necessary for her’.”
Heather Richmond lodged an appeal in August against the NDIA’s rejection of the walker for Katinka.
She is hoping for an answer soon, as the teenager’s mobility is deteriorating.
“This little girl … she used to be at a stage where she could walk with just the forearm support walker for maybe up to 50 metres.
“And she’s now at the stage where … she was so worried about standing and walking, and she was losing the skills to do so.
“And this is the most devastating thing about it all.”
Why is it so hard?
Experts in assistive technology policies say the NDIA has procedures that make it hard for people with disabilities to get equipment they need.
Dr Emily Steel, from the University of Southern Queensland, says the agency is trying to find ways to speed up assistive technology decisions and appeals.
She says people participating in the NDIS often cannot exercise choice and control in their lives until they have assistive technology.
“There are very few people trained to provide assistive technology in Australia, and there’s no credentialing system,” she said.
“So it is not surprising that decisions are reviewed or rejected, when very few people in the sector — participants, service providers, planners and NDIA staff — have the necessary understanding of how it fits into the scheme,” she said.
She says it is possible the agency is caught in previous state government procedures that were used to provide equipment, which do not align with the NDIS objective of being centred around individuals and enabling choice around the supports that are provided.
Dr Steel will be discussing assistive technology policy at a side event to the UN Conference of State Parties to the Convention on the Rights of Persons with Disabilities in New York next week.
She is calling for a more systematic approach in which disability equipment needs are thoroughly thought through when an individual’s NDIS plan is drawn up.
“The NDIS is wonderful — it’s such a significant cultural transformation from where we’ve come in disability services in Australia, but we have a long way to go to make that cultural change successful, to really move to something that is centred around the individual, and is focused on the support to enable them across their lives.”
‘Check after check’
Katinka’s mother, a nurse, is on stress leave at the moment because of the impact this has had on her family situation.
The Opposition’s Jenny Macklin says the bureaucracy is frustrating for people with disabilities, their families, and service providers.
“There’s so much evidence of people being put through check after check”, Ms Macklin said.
“Dealing with the excess bureaucracy would make a huge difference to the way in which people get services and get them more quickly.”
The Government put $64 million towards the NDIS in the budget to fund more disability workers.
The head of the NDIA, Robert De Luca, has told Senate Estimates it will discover areas that can be improved as the system is rolled out.
Since this story aired on AM on ABC Radio, several parties have come forward offering donations to help Katinka and her family.