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."
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