More than 2400 men, women and children across the Wimmera and south-west Victoria are receiving support under the National Disability Insurance Scheme.
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LaTrobe Community Health Services has been tasked with rolling out the NDIS in 10 council areas – half of them in the Wimmera.
Regional manager Leeanne Thomson said the service had received strong interest after starting to roll it out in the region in October 2017.
“We have about 2091 participants that are accessing the NDIS, and in our Early Childhood Early Intervention program there are about 398 participants,” she said.
“Of that, we’ve had roughly 200 new participants come in that have never accessed funds before – whether that’s because of the remoteness of where they live, or they’ve been on waiting lists for long periods of time.”
The NDIS involves the federal government providing funding for support and services for people under 65 who have a permanent or significant disability. Its staged roll out began in July 2016. The independent body overseeing the scheme nationwide is the National Disability Insurance Agency.
The NDIA’s latest quarterly report shows it received 5539 complaints from participants in the three months to September 30, 2018. This represented nearly seven per cent of all participants.
In April 2018, researchers interviewed people on the scheme, asking them to evaluate its success. They identified regional participants as having poorer outcomes with the NDIS due to limited services and internet access.
Some clients surveyed said they were confused about their eligibility due to perceived unclear boundaries between the NDIS and mainstream health sectors.
Ms Thomson said confusion around different aspects of the NDIS was the biggest difficulty the health service had encountered in delivering the scheme.
“Probably the biggest overwhelming feedback we get is (from people) not really understanding what the scheme means and how to work out whether they’re eligible,” she said.
She said funding was another issue.
“In the past, two people with intellectual disabilities who needed the same services would have gotten the same funding,” she said.
“Now, people are comparing their plans and asking, ‘how come their plan is different to mine?’. So there is a lot of education needed and particularly around time of implementation about how plans are unique – because it’s about the individual and their goals.”
Ms Thomson said she had heard largely positive feedback about the Early Childhood Early Intervention program.
“There was one little boy who just went through a review and his mum cried because she had been able to get access to funding to have assessments done on her child she hadn’t been able to before,” she said.
Horsham woman praises scheme
Like many 62-year-olds, Horsham resident Louise* wants to get as much out of life as possible, for as long as possible.
The work she does and conversations she has are geared towards keeping her body and mind active, and she is intent on staying in her own home, helping her elderly parents and watching her grandchildren grow up.
She says the National Disability Insurance Scheme has helped her in these endeavors immeasurably.
“My goal is to not have to go where someone has to help me all the time – and by having the NDIS I can do exactly that,” Louise said.
Louise lives with multiple sclerosis – a disease in which cells from her body’s immune system attack the myelin sheath, the protective covering of her nerve cells.
This ultimately affects the function of many other body parts, which in Louise’s case made it harder to identify.
“I was getting very tired in my limbs, they would get heavy, but I just thought I had been working too hard or for too long,” she said
“Then I woke up one morning and I couldn’t really see properly, everything was running past the side of me like the credits at the end of a movie and my eyes were just doing that.
“I went to the doctor and they told me it was vertigo, and they treated me for eight weeks as if it was.
“In the end they did some MRIs to check what was happening, and… it turned out it was multiple sclerosis.”
With hindsight, Louise said there was an upside to not being diagnosed until she was in her 50s.
“There are different ways you have to cope when you don’t know,” she said.
“I remember going to the doctor once because I was terrified I was going to drop my youngest child because I had this problem in my wrists, and they said it was just carpal tunnel and it’ll ease off. Obviously that was connected to MS, too.
“I look back on it and think, maybe I’m glad I didn’t know then and continued on normally. Now it’s hitting me, I’m glad I do know. This is the problem and this is how I have to cope.”
The NDIS began to be rolled out in Horsham nine years after Louise’s diagnosis, and she was reluctant to join when her neurologist recommended it.
She wanted to continue trying to cope by herself.
“I thought I was perfectly fine, until it just got to the stage where I couldn’t do the things I wanted to do anymore,” she said.
“Even to do my housework was a struggle. I had to do it bit by bit because I didn’t have the strength even to wash a floor (or) vacuum.”
She was accepted as a participant in January 2018, but it was another five months before she came to see one of Horsham’s NDIS local area co-ordinators.
“I was embarrassed, I didn’t think I needed it, (but) when I came to see her and she explained what could help me, it was a whole new world.
“Without her gently convincing me to give it a go, I wouldn’t have done it.”
With support from the NDIS, Louise now gets help with housework and undergoes physiotherapy to keep her muscles strong.
She sees a speech pathologist once every four months for exercises to help her swallow, and has occupational therapy to ensure can keep performing tasks such as turning off taps and opening jars.
“It makes so much difference to have someone to help to do the little things everyone takes for granted,” she said. “It means you don’t have to burst into tears because you can’t make the bed properly.
“My parents are in their 80s, and I’m able to go around to them and sit down and have dinner or coffee with them without having to think, ‘How am I going to do all that housework’?”
Louise recommended people considering applying for the NDIS talk to a local area co-ordinator to find out how the scheme could help them.
Ultimately, Louise wants to be the one deciding to what extent multiple sclerosis defines her.
She has chosen not to be named in this story because she doesn’t want people feeling sorry for her or to label her as inspiring.
Louise has relapsing-remitting multiple sclerosis – the most common form of the condition. It is characterised by clearly defined attacks of new or increasing symptoms, followed by periods of partial or complete recovery. The relapses, and their severity, are impossible to predict.
“They can’t tell you how severely MS will affect you in the future, it just happens,” Louise said. “I could go quite nicely for the next few years or I may go down. That’s why you do what you can while you can.”