While 9yo Zarli took her first steps at therapy her NDIS funding was cut
Each wobbly step felt momentous for Ms Skopp, but her jubilation was cut short.
After arriving back at home in Calliope in central Queensland, she learned her daughter's funding for the service had been cut by the National Disability Insurance Agency (NDIA).
"It's disheartening because Zarli's goals are going to be slowly reached if we don't give her as much as possible now."
Zarli was born with CHOPS syndrome, a rare genetic disease which affects multiple parts of the body and can delay skills like walking.
Ms Skopp said Zarli took her first steps at Brisbane's NAPA Centre in April this year during a three-week-long therapy block which focused on building her core strength.
Ms Skopp said her daughter's physiotherapy, occupational therapy and speech pathology funding under the NDIS had almost halved from $59,782 to $30,366 since her plan was reviewed in April.
Her total NDIS plan of $194,000 per year was reduced to $179,000, and included 233 hours of allied health and behaviour supports annually.
The NDIA, which operates the NDIS, said its top priority was ensuring participants could access the disability support they needed.
"As a child's needs change, plans will change — especially as children start to access other community supports such as early childhood education or school."
It said funding was provided based on individual needs rather than funding providers or programs.
A review of Zarli's funding was requested by her family, and is in progress.
NAPA (Neurological and Physical Abilitation) Centres help families with complex disabilities access multidisciplinary care.
Australian director of client services Louise Conn said she believed it was one of the few clinics in the country which had experience working with a child with CHOPS syndrome.
She was devastated to learn Zarli's funding had been cut.
Ms Conn said she would like the NDIS to look closer at internal cost savings rather than savings from developing children.
"We do have deep concerns that the cuts that they are making seem to not be very well focused," she said.
"Nine-year-old children who are learning to walk are becoming the victims of a very, very, strange big budget shift."
Ms Conn said the centres had noticed — irrespective of diagnosis, age or location — funding was being significantly cut across the board.
"Allied health professionals provide a lot of complex reports … and these seem to be getting ignored more and more, and the recommendations ignored, which is really, deeply concerning," Ms Conn said.
Ms Skopp said it was the second time her daughter's NAPA Centre funding had been cut.
"It's stressful, especially when you feel like you're providing all the evidence they require," she said.
Ms Skopp said her daughter had regressed since taking her first steps, but was confidently using her walker.
She said Zarli was at an exciting, sponge-like stage of life.
"She has become very playful, the eye contact and the communication.
"She's just succeeding in so much and this is really where we need to throw as much as we can at her."
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
ABC News
2 hours ago
- ABC News
Calls for better warning labels on alcohol
Andy Park: The WHO classified alcohol as a carcinogen back in the 1990s, even saying there's no safe level of consumption. Now Australian researchers are calling for bright coloured labels to be added to alcoholic drinks, warning consumers that alcohol causes cancer, not unlike the warnings on tobacco. Experts say many Australians don't know there's strong evidence that alcohol is directly linked to seven types of cancer. Joanna Crothers reports. Joanna Crothers: Alcohol's links to cancer aren't top of mind for these Perth workers at knock-off time. Perth worker 1: I'm not entirely sure that I know that there's a direct link. I haven't seen any evidence to suggest that. Joanna Crothers: But the general health risks were more familiar. Perth worker 2: Yeah, I'm quite aware if you're a heavy drinker it can lead to issues. Joanna Crothers: As well as illnesses like heart and liver disease, the World Health Organisation warns alcohol causes at least seven types of cancer, including bowel and breast cancer. UNSW's Dr Claire Wilkinson is on the WHO's advisory group for alcohol labelling. Claire Wilkinson: I think people are not aware that alcohol causes cancer. So liver cirrhosis, people are more aware of that link. But other types of cancers such as breast cancer, colon cancer, colorectal cancer, people are less aware of the causal link. We think that as a product, consumers have the right to know. Joanna Crothers: Dr Wilkinson is calling on Australia to adopt the WHO's recommendations for cancer warnings on alcohol. She says a trial in Canada proved cancer warnings, improved awareness and encouraged people to rethink their drinking habits. Claire Wilkinson: The label was about, I'd say, two centimetres tall. It was in a very strong contrast of bright red and bright yellow. And it had the message, alcohol can cause cancer in black bold font. And then it went on to say, including breast, colon and stomach cancer. Joanna Crothers: Canada also leads the way on alcohol consumption guidelines, recommending no more than two drinks a week, while Australia recommends no more than four drinks on any one day and a maximum of 10 a week. But Alcohol Beverages Australia's Executive Director Alistair Coe says further restrictions are not needed, including cancer warnings on bottles and cans. Alistair Coe: The industry does not support these warning labels. Of course we promote a culture of drinking in moderation, but simply putting another label on a container is not going to bring about change. Joanna Crothers: Mr Coe says the majority of Australians drink responsibly. Alistair Coe: So we need to make sure we're taking a holistic and very well evidence based position. Joanna Crothers: In a statement, the Health Department says the National Alcohol Strategy identifies reforms and aims to prevent alcohol related harm, and the department will monitor the impact of Ireland's warning labels. Last week, Ireland postponed the rollout of these labels until 2028. Back in Perth, these people had mixed views on warning labels. Perth local 1: I think there's enough advertising and awareness of that sort of thing. And at the end of the day, people need to take responsibility for their own actions. So we're not two year olds. I think we're governed enough as it is in this state. Perth local 2: Yeah, I think it is probably something that people should be warned about, because in Australia, most people drink every night. So it would be a bit more in your face. Perth local 3: I don't think it's going to make any difference. If somebody's going to drink, they're going to drink. Andy Park: Perth drinkers. Ending that report by Joanna Crothers.
ABC News
5 hours ago
- ABC News
Man hospitalised after falling object crushes pelvis in workplace accident at Darwin's East Arm
A worker has survived being crushed in a workplace accident in Darwin. St John Ambulance said an object fell onto the man's pelvis at an East Arm site, within the city's coastal industrial area, around 12:45pm on Saturday. He was taken to Royal Darwin Hospital. Paramedics said the man is in a stable condition.
ABC News
12 hours ago
- ABC News
Suicide prevention leader and senior researcher outline why lived experience is vital for national strategy
When it comes to suicide prevention, Samantha McIntosh knows more than most. With a lived experience of suicidality, a long career in suicide prevention and a recent foray into academia on the subject, the Darwin woman has seen multiple facets of what she described as a still highly stigmatised issue. As opposed to coming from a purely clinical perspective, she says having both personal and professional experience of suicidality — defined as the risk of suicide, indicated by suicidal ideation — can be crucial to engaging with patients and devising solutions. Ms McIntosh has long advocated for people with lived experience to be central when it comes to drafting strategies and other prevention efforts. And governments and independent commissions are starting to agree. According to a June 2025 report from the Productivity Commission, the federal government's National Mental Health and Suicide Prevention Agreement is failing to meet the mark. While the expenditures of governments on mental health has grown by around 30 per cent over the past 10 years, suicide rates over that period of time remain unchanged. The Productivity Commission recommended greater inclusion of people with lived and living experience of suicidality in drafting and implementing policy. For Ms McIntosh, the recommendations present a rare opportunity for change. At the other end of Australia — in the regional Victorian town of Warragul — Anton Isaacs, a senior lecturer at Monash University's School of Rural Health, has been helping bring Ms McIntosh's ideas to life. "It's rare for somebody to have the kind of expertise that Sam has," he said. "She has the lived experience of suicidality, she has supported people who have attempted to take their lives, she has been a suicide prevention worker and she worked in leadership positions in programs." The pair recently co-authored a peer-reviewed perspective paper on challenges to suicide prevention, merging Dr Isaacs's experience of drafting strategies with Ms McIntosh's experience of navigating them. It focuses on broadly on stigma surrounding suicide, diving specifically into the careless reporting of suicide in news media, access points of care, and a general lack of understanding in the community when it comes to helping at-risk individuals access services. Dr Isaacs said the work being done is just the beginning, but he noted that integrating lived experience into suicide prevention would require the sector to confront some "basic truths". "Suicide has traditionally fallen under the remit of mental health services, which are clinical services. In clinical medicine, the focus is to arrive at a diagnosis and treat it," he said. "In suicide prevention, the focus is not on arriving at a diagnosis and treating, the focus is care and compassion — that is not clinical. Ms McIntosh agreed, and said the key to effective suicide prevention was a matter of striking the right balance. "That combination of clinical and lived experience doesn't exist in a lot of places," she said. Last month, the Mental Health Commission published its National Suicide Prevention Strategy for the next 10 years, which emphasised the inclusion of people with lived experience in prevention efforts. "People with lived and living experience have the greatest insights into what works, what does not work, and what is missing in suicide prevention," it reads. But Dr Isaacs and Ms McIntosh explained that such inclusion must be considered and meaningful, rather than a "tick-box exercise". "If people don't consider lived experience to be central or core to their work, then they don't give it the importance that they need," Dr Isaacs said. "If that happens, the people with lived experience at the table will feel disillusioned or could be re-traumatised." Ms McIntosh also said any plan to centralise lived experience in prevention efforts would have to be tailored to the needs of various communities, especially in a unique landscape like the NT. "The geographical layout of the territory itself poses problems," she said "We know that there's workforce challenges across the [NT] in all sectors and being able to support the diversity of the territory and communities is also something that we face." While the obstacles to change are numerous, she said there was plenty of support across the sector to make lived experiences central to new prevention strategies. "I think that they would be more successful, I think that they would be more achievable, and I think you would have higher client rates," Ms McIntosh said.
