Perth family locked in battle with NDIS over care for disabled son

Since Azzrah Anderson was born 13 years ago, his parents Lisa and Aaron have faced the enormous task of caring for their much-loved son and the complex impacts of his multiple disabilities.

Azzrah, who is autistic and non-verbal, relies entirely on 24/7 support to manage his Lennox-Gastaut syndrome — a rare form of epilepsy — as well as an acquired brain injury from a stroke, right-sided cerebral palsy, and severe intellectual disability.

It's a difficult juggling act for Lisa, an education assistant, and Aaron, a FIFO worker.

The family has been locked in a struggle with the National Disability Insurance Scheme (NDIS) to secure what they believe is the minimum support to meet their son's needs.

"Azzrah is palliative, [his condition is] degenerative, he does have a life-limiting prognosis," Lisa said.

Believing Azzrah's plan did not meet his needs, the Andersons asked the NDIS for additional support.

But instead of receiving the help they expected, it started "a big battle", Lisa said.

"They [NDIS] did their investigations and came back with a new plan which was less than what we had started with," she said.

Lisa said what they needed from the NDIS was around-the-clock support and overnight nursing care.

The Andersons appealed, this time pursuing arbitration in the hope of resolving the issue.

Azzrah's NDIS plans have varied wildly over the years — in some cases by hundreds of thousands of dollars — making it difficult for the family to coordinate his care.

"Families should not have to keep justifying every year when there is no miracle cure to change his terminal diagnosis," Lisa said.

On top of providing and coordinating round-the-clock care to their son, battling the NDIS has had a heavy impact on their time and their lives.

"It's the time that it's taking … I'm probably doing 6 hours a day administration of sending emails and phone calls. I shouldn't have to do that," Lisa said.

With looming shoulder surgery, the situation for Lisa became urgent.

Her recovery could take 16 weeks, limiting her ability to care for Azzrah.

But even that prospect did not persuade the NDIS to shift its position, Lisa said.

It left the Andersons facing a difficult choice: fight on and contest the NDIS decision in court, or settle for a plan they believed didn't meet their son's needs.

In the end, they settled for what they say was a lower level of support. The NDIS maintains it was not.

"There has been no reduction in funding in this case and the recent plan review resulted in a significant increase," a spokesperson said.

Containing costs

Disability advocate Julie Bloomfield said the Andersons' struggle was not an isolated case.

"The NDIS is under pressure to contain costs, so families are finding it harder to retain their existing level of support," she said.

The NDIS is going through a significant reform process to contain the rapidly rising cost of delivering the service, which is currently about $53 billion per year.

Costs have grown much faster than expected, and the reforms aim to ensure the scheme remains financially sustainable.

But that process is creating uncertainty for participants and their families, Ms Bloomfield says.

"Parents are having to give up their jobs because of having to provide the additional support to their family members," she said.

The NDIS said its priority is ensuring participants have access to the disability-related supports they require. Lisa Anderson disagrees.

"Why do families have to fight every year and continually jump through hoops?" Lisa said.

For now, the Andersons are resigned to working within the new plan and doing the best they can. If that's not enough for Azzrah, they say they'll resume their struggle for more support.

In the meantime, Ms Anderson said she had been diagnosed with a permanent shoulder impairment.

"This entire process has significantly impacted our family, causing emotional, financial, and physical strain," she said.

However, she still encourages other families to "be the voice of change" for their children.

"Behind those NDIS numbers, there is a person and behind that person is their village," she said.

"So, it just doesn't affect one person. It affects the village."