Disability advocates describe the case of the NZ woman who fled her abusive Australian partner as a potential ‘travesty’

A New Zealand woman who fled her abusive Australian partner has been left facing a bureaucratic nightmare as she fights for her daughter to access the NDIS.

Sarah, whose real name cannot be used for legal and safety reasons, said her two-year-old was born with congenital heart disease and a bone defect that means her leg will be amputated next month.

Under NDIS rules, only Australian citizens and permanent residents can access the scheme. Sarah has been unable to obtain the necessary documents to prove her daughter’s eligibility due to what hospital staff described as “emotional and financial abuse”.

She said the National Disability Insurance Agency and Department of Home Affairs staff had been unable to tell her how she could prove her daughter’s Australian citizenship, passed down through the father, without his involvement.

The complex case has been described by disability advocates as a potential “travesty” that exposed a “loophole” in current processes.

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“It’s been so difficult,” Sarah, 30, told Guardian Australia. “I just cannot cope with a very sick child and having to fight for her rights at the same time. Especially being by myself and not knowing if she will wake up the next day.”

Sarah, who lives in Perth, receives funding for her daughter’s care through the Western Australian government, but this will expire in July when the NDIS rolls out in her area.

Her daughter requires a speech pathologist, an occupational therapist and a physiotherapist and is developmentally delayed, having spent most of her life in hospital. The child’s care is expected to cost Sarah about $62,000 a year, according to a quote seen by Guardian Australia.

“Currently [she] is palliative because her heart condition and her lung condition and the way her arteries, and specifically her pulmonary veins, have developed mean [she] will never have a heart pumping system that is fit enough to support her,” Sarah said.

“They have done five heart surgeries … so far. A couple of those were to change the shunts that she has, a few of those were to change the veins and to try and repair the heart.

“None of them have been successful to a point where they can say we fixed the problem.”

In response to questions from Guardian Australia, an NDIA spokesman insisted the agency was working through the family’s application, while Home Affairs suggested citizenship applicants could provide a “statement” in lieu of the required documents.

But Sarah said she had already been told by Home Affairs she would need to get a DNA test done for her daughter and her daughter’s father, or provide a certified copy of his citizenship certificate and a certified passport copy. Otherwise, she would need to seek a court order to obtain the documents, she said she was told.

Facebook Twitter Pinterest A mother who is unable to get access to the NDIS for her daughter due to citizenship issues fears her daughter will be left without care when state funding ends in July.

“The response after I spill out my guts is that there is nothing further they can suggest or do for me without me,” she said. “Their processing pathways are clear and anything that falls outside of that does not apply to them because it will mean it is an automatic decline.”

On Thursday, she said she didn’t know “whether to laugh or cry” after being told a citizenship application takes “10-14 months to process”.

Matthew Bowden, a co-chief executive at People with Disability Australia, said it would be a “perverse outcome” if the family was left worse off due to the NDIS rollout.

“People’s lives, circumstances, support needs and their human rights do not always or easily fit into legislative frameworks – this applies to the NDIS as it does with all human services legislation,” he said.

Sarah’s social worker, who also cannot be named for safety reasons, said there did not appear to be “a system to assist those applicants who have DV issues”.

“Being in this service provision area for such a long time, I have never come across so many obstacles for one family,” the social worker said. “Those complications have come from a federal change in the system, from immigration and the NDIS.”

Sarah is also among 600,000 New Zealanders who are blocked from accessing most of Australia’s social security system, due to visa changes introduced by the Howard government in 2001.

She was brought to Australia by her parents as a teenager in 2006. New Zealanders on non-protected visas can access only six months of Newstart, which Sarah did while fleeing her former partner and caring for her daughter at her sickest.

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She is also blocked from accessing carers’ payments through Centrelink and fears that if her daughter is admitted to hospital again she will be left with virtually no income. Already, she can only work part-time due to her daughter’s condition.

“The thing is that if she is unwell it can become life-threatening very quickly,” she said. “She has had instances where she has been in ICU for weeks. The longest stay we’ve had in hospital was four months.

“When she’s good, she’s good. But if she’s sick again, I can’t go back to work. She requires 24-hour care.”

Sarah’s citizenship meant she was also locked out of social housing when she fled her former partner.

The Greens senator Jordon Steele-John, who has advocated for the family, called on the government to “step in and with real urgency make sure the child can have the support and care she needs”.

A spokesman for the NDIA said the agency had contacted the mother to “reassure her that the NDIA is committed to continuing to work with her on [her daughter’s] access request – understanding the complexities”.

“The NDIA will also work with the WA government to ensure [the child] and her family continue to receive the support they need, noting eligible participants continue to receive state support until the start of their NDIS plan,” he said.