Zaiden Dyball is a five-year-old boy born in 2017. He has a daily uphill battle due to a rare genetic disorder known as UBE2A Microdeletion. This unique condition impacts his development and sensory regulation, requiring intensive, specialized therapy that can help him thrive. In recent weeks, Zaiden has made some remarkable strides. In the last 18 months he has made progress with assisted steps and has been able to sit up and stand independently with support. Reforms to the National Disability Insurance Scheme (NDIS) are causing alarm for Zaiden’s mum, Tiana Dyball. Beyond the technical issue, she fears for his continued access to life-saving therapy sessions.
For years, Tiana Dyball has had to hunt down appropriate therapists for her son—who is only able to get therapy services at home. The new NDIS price rules will further limit access to crucial services like those outlined in this report. She’s worried that Zaiden will lose his favorite therapist or have fewer sessions as a direct result. This alteration would drastically ring-fence his progress, which is already subject to the most razor-thin of supports.
When everyone is disconnected from one another, it’s crucial that we all have continued access to support services, says Zaiden’s speech pathologist, Maryane Gomez. She points out that when speech pathologists leave the NDIS system in droves, clients like Zaiden won’t be able to get the care they need.
The Importance of Consistent Therapy
Zaiden’s path has been a series of exciting firsts, showing the tremendous strength of spirit and fight this little guy has inside him. As of only a few weeks ago, he took his first assisted steps with the support of in-home therapy sessions. This progress is even more encouraging when considering the boundaries placed by UBE2A Microdeletion.
In the past year and a half, he has developed the skills to sit on his own and stand with support. Tiana wants to make sure therapy for Zaiden happens in a comfortable environment. She continues, “Any time we have to go to the clinic, it really sets him off.” What’s happening to him is he’s getting nauseated and then he’s just shutting down, so we’re having these really unproductive therapy sessions.
Tiana worries how these NDIS changes will compound the effects of already preventing Zaiden from having an adequate and consistent access to therapy. She knows that if they don’t keep doing regular sessions, his progress will plateau. “Zaiden’s risk of being pushed out,” she says, foreshadowing some of the worries that come with losing that support.
New NDIS Price Rules Raise Concerns
The changes, one of which will see a sudden drop to mid-level support pricing, have sent shockwaves through the parental and service-providing community. Tiana Dyball especially fearful. These changes are happening, Dyball notes, just as her son is going to enter a phase where he requires more intensive and specialized support. Under the new rules, that might mean fewer therapy sessions or, in some cases, no services at all.
Immigration Council worker, Maryane Gomez, highlights the real impact that such changes would have. This is because there are incredibly few clinicians that are properly trained to work with this population,” she explains. The scarcity of qualified professionals makes it imperative that existing service providers remain in the system to continue supporting children like Zaiden.
The National Disability Insurance Agency (NDIA) agrees that the new rules will create significant hurdles. Yet, they’ve made it clear that they think these rules are critical to ensuring the program can be sustainable. As one NDIA member put it, they are suffering from serious change overload. Second, they stressed the importance of managing changes in service provision to avoid unexpected impacts on participants’ care.
The Path Forward for Families Affected by Disability
Parents such as Tiana Dyball are left in limbo as they try to adapt to the ever-changing world of NDIS services. Her fears come from her own lived experience. They do, however, represent a greater concern that the future of focused, specialized care for children with really rare conditions is in danger. “I think that this was really just kind of dumped on us out of nowhere,” she says. As a parent of an adult with a disability, it’s awful.
Costs NDIA takes very seriously its responsibility to monitor this market and work with providers to cultivate a climate that produces high quality supports. They are aware that under the new regulations, travel costs may be burdensome for some therapists. Most importantly, they stress that they want to keep a robust network of providers.
Families are counting on these supports for their children. To make certain that children such as Zaiden are getting the individualized care and attention they require to truly flourish, a conversation must take place and continue to happen between parents, service providers, and governing authorities.
