KELLIE Wall watched her 10-year-old son Braith make some “unbelievable gains” under a promising National Disability Insurance Scheme (NDIS) plan that gave him access to appropriate therapies and support.
But since an NDIS plan review in January, the Medowie family has been fighting a decision to slash Braith’s overall funding by about 65 per cent.
“It left us with not even enough money for his basic core supports, like bathing, toileting, and getting him out of bed of a morning – that sort of thing,” Ms Wall said.
“They also slashed our therapy budget. They have given us some more equipment – but not enough therapy to be able to use it.
“These communication devices cost about $30,000, but it is going to be a paper weight, because he is not going to have enough therapy to work out how to use it. It doesn’t make sense.”
Braith, who has cerebral palsy and a seizure disorder, went from 10 hospital visits a year, to one in 13 months under his first NDIS plan.
“He has gone from 106 days off school for being unwell, to 26,” she said.
“He has gone from a kid who was incontinent, to toilet timing.
“He has gone from a kid who had no communication at all, to doing full sentences on a device from the NDIS.”
Mrs Wall said prior to January, she had been a “huge advocate” for the NDIS.
“I thought, ‘This is amazing. Look at what can happen when you get the support you need,’” she said.
“And then to have it ripped out from underneath us is devastating. Now we have to go back and fight again.”
In January, Braith was offered an NDIS plan that was almost $190,000 less than the original.
Funding for his “core supports” – such as bathing and toileting – dropped by about 50 per cent.
This was after the family clawed back some funding after an initial review. But Mrs Wall said it was still almost $112,000 less than what was offered in their first plan.
“It is still not enough to cover his everyday needs,” she said.
After going through the review process, the family will now take the matter to the scheme’s Administrative Appeals Tribunal.
Mrs Wall said this was far from an isolated incident. It was happening across the board, all the time.
Sadly, she said, many people were just giving up.
“You are dealing with people who have battled the system for so many years, and some of them just can’t do it any more,” she said.
“They are just that fatigued, and that worn out, they just haven’t got the fight left in them. So they get what they are given. They say, ‘We’ll just deal with it this year and try for more next year’.”
She said navigating the NDIS system was difficult.
The communication was “appalling.” A two-hour wait to get through on the phone was a “good day,” and if you had the time to wait, you would never speak to the same person – or get the same answer to the same query – twice.
The NDIA had only recently begun recording the phone calls, Ms Wall said. Prior to that, there was no proof of previous advice or assurances offered during earlier contact with the service.
Yes, it’s a new system, but if people like us aren’t speaking up and saying ‘This isn’t working,’ it’s not going to get any better.Kellie Wall, Medowie
“The NDIS is still making a difference, but it is such hard work,” she said. “They are getting it right in some instances, but the people missing out the most are the ones who are quiet, and that fatigued they can’t fight anymore, and the ones in lower socioeconomic areas, or those who are not as well-educated in what they are entitled to.
“It is tough enough for me, as a parent with a tertiary education, to navigate the system and advocate for my son. But what about the people out there who have a disability themselves, that need help with language or need help across the board? We’re expecting them to navigate this same system?
“Yes, it’s a new system, but if people like us aren’t speaking up and saying ‘This isn’t working,’ it’s not going to get any better.”
A spokesperson for the National Disability Insurance Agency attributed the drop in Braith’s funding to “upfront costs.”
“Plans are reviewed at regular intervals and can change, which is reflective of the insurance approach of the NDIS,” he said.
“Braith’s initial plan included upfront costs, which were not required in his second plan. The plan was adjusted to reflect this, and did not represent a 65 per cent reduction.”
Mrs Wall said Braith has very high care needs.
“Braith needs two people to get him out of bed, and give him a bath or get him ready for school, because he needs to be hoisted. He also needs support with suctioning. Just to get him out of bed and then bathed of an afternoon costs more than $7000 a week,” she said.
Prior to the NDIS, the family funded Braith’s support needs themselves.
They had received $8000 from Better Start when Braith was aged between five and eight, and Home Care had visited for an hour a week to help him have a bath – although it had been easier to manage when he was younger, smaller and lighter.
“There is no respite,” she said. “I kept a diary to keep track of how often I needed to get up to him at night, and it was 35 times over three nights when he was unwell. On an average night I would be up about five times.
“We can’t afford to have someone in to help of a night time. And then we have to we get up in the morning, get the rest of the family ready too, and go to work.”
But NDIS service agencies did not have enough qualified and experienced staff to meet demand, she said.
It meant there was a constant stream of different staff coming through.
“On many occasions, they’ve just gone – ‘We can’t fill that shift,’ and they will ring you an hour before,” Mrs Wall said. “Luckily my husband and I have it fairly well covered that if I’m at work, he’s at home, and vice versa – but we don’t see each other.
“Braith is only 10, and he has a parent at home with him. But if he was an adult, and that was his only way to get out of bed, or to get showered or changed, and it kept getting cancelled at the last minute, it would be horrendous.”
But to make matters worse, Mrs Wall said, the NDIS planners in charge of deciding a person’s plan often had no formal education or experience working in the disability sector. Some NDIS planners had three days of training prior to taking on the responsibility of building strategies for people with complex needs.
Tertiary education, or experience, was not a prerequisite for the role.
“A recent training block had a hairdresser, a bus driver, and a social worker with little-to-no experience in disability,” she said.
“I don’t know how they are making these decisions when they have no clue about disability issues at all.
“We have 10 years of experience in disability, with our son, and I have a medical background, and I wouldn’t like to take that job on. So you are trying to explain intimate details of your person with a disability’s life, and your life, to somebody who is completely unqualified.”
Mrs Wall was grateful for the support of their disability advocate, who questioned what kind of review the NDIS would conduct after their initial protest to the new plan.
Most of the reviews offered were “internal,” and “kept under wraps,” as opposed to a more accountable review that could be taken to the tribunal if it still did not meet an NDIS recipient’s needs.
“Because the NDIS is such a fluid thing at the moment, they are changing legislation on a constant basis. And if you’re not up on it, and on top of it all – and who is, who has the time? – you’re behind the eight ball,” she said.
“Disability advocacy has been a godsend.”
Mrs Wall said if the NDIS was properly funded, it would benefit everyone.
“If they fully funded this system, in the end, it will make money for them,” she said. “The Productivity Commission says once this is in place for everyone, we’ll have more people with disabilities in the workforce, paying their taxes.
“It may not work for everyone. But the more we can integrate them into communities, the more they can contribute to communities, the better off we will all be.”