Three days after Emma de Tracy Gould’s 17th birthday in December, she found out she would get no Australian government support for her disability.

Emma was diagnosed last year with Ehlers Danlos syndrome, a rare genetic condition caused by defects in the collagen protein. She has joint hypermobility, soft skin that stretches easily, chronic musculoskeletal pain, and hips and a left shoulder that dislocate multiple times each week. She also experiences chronic fatigue.

Emma had hoped to get a new wheelchair to help with her mobility and independence while completing year 11, along with financial assistance for a carer and regular specialist appointments.

Emma lives in Swan Valley, Perth, with her mother, Michaela, who is a permanent resident. But because Emma is a New Zealand citizen on a special category visa, she is ineligible for Australia’s national disability insurance scheme.

Emma and her younger brother were both born in Nelson before her family moved to Perth in 2010.

New Zealanders are able to live permanently in Australia, automatically receiving a special category visa on arrival. But under changes made by the Howard government in 2001, those holding this visa are locked out of many Australian social security and welfare payments, including housing assistance, university loans and the NDIS.

In many cases, New Zealanders have lived in Australia for several years, had children in the country and contributed to the funding of the NDIS through the Medicare levy, but are unable to access it if their children need assistance.

“All these children are in limbo-land at the moment, and somebody needs to stand up and take responsibility for them,” Michaela de Tracy Gould says. “They’re all slipping through the cracks at the moment.”

Emma needs to use a wheelchair to travel more than 200m. She currently uses one that weighs 14kg and is the wrong size, borrowed from a family friend. But this greatly restricts her independence. She has been recently prescribed a new wheelchair by her occupational therapist, weighing half as much.

“It would be a massive difference,” Emma says. “With my current wheelchair I can’t be independent.”

But the wheelchair costs more than $10,000, a figure the family can’t afford without government assistance. They have now launched a crowdfunding campaign to try to raise the money.

After being knocked back by the NDIS, the family applied for the state-based equivalent, the WANDIS. At the end of last year they were also rejected for this after it was ruled that Emma’s condition was not ongoing and that she would be better in two years, despite her specialists contradicting that prognosis. Emma’s family is appealing against the decision.

“It’s frustrating,” Emma says. “It’s a genetic disorder that often gets worse with age, but they told me it would get better.”

Children with New Zealand parents who are living in Australia and who require wheelchairs or life-changing physiotherapy are being denied access to the national disability insurance scheme. Photograph: Dave Hunt/AAP

‘It’s cruel to deny her’

There are many other families in a similar situation, many of whom have lived in Australia for several years.

Julie Goble’s daughter Maylea, who is now 18-months-old, was diagnosed with left-side hemiplegic cerebral palsy in March last year, when she was just five months old. It’s a permanent condition that has left her unable to use the left side of her body.

She has to receive expensive physiotherapy and occupational therapy, with specialists regularly espousing the importance of early intervention medical treatment to improve Maylea’s long-term quality of life.

But because Goble and her family are living on special category visas, they are also restricted from receiving any support from the NDIS.

It’s really cruel to deny her all of the possibilities and all of the things that she would benefit and flourish from Parent Julie Goble

“It’s heartbreaking,” Goble says. “It’s really cruel to deny her all of the possibilities and all of the things that she would benefit from and flourish from.

“She certainly doesn’t have as much physiotherapy as I would like her to have – we just can’t afford to be going more than once a fortnight. And she is definitely not having as much at-home physiotherapy as she should be.”

Children born in Australia to New Zealand parents become eligible for Australian citizenship when they turn 10, which then allows them to access the NDIS, but Goble says that possibility is too remote to offer Maylea effective help.

“If we have to sit around and do nothing and wait until she’s 10 years old, her mobility and ability to do things for herself is going to be vastly different,” Goble says.

‘Trapped between a rock and a hard place’

The lack of access to the NDIS is likely to feature prominently in an upcoming legal challenge against the citizenship conditions for New Zealanders in Australia. David Faulkner from the lobby group Kiwis in Australia, who is coordinating the challenge, says he has already been approached by several families.

“They’re trapped between a rock and a hard place,” Faulkner says. “The NDIS and the regime are blatantly unfair.”

The prominent lawyer Greg Barns has offered pro-bono assistance in the case, which is still in its early days.

While there have been some rumblings from the opposition and crossbench, the government appears unlikely to budge.

A spokesperson for the Department of Social Services said: “The residency requirements ensure the NDIS is targeted at people with disability who will be living in Australia permanently. Residency requirements for the NDIS align with other commonwealth government schemes for people with disability and their carers.”

Special category visa holders are able to apply for permanent residency if they meet certain thresholds, including a salary of at least $53,900 annually for the last four years.

Emma de Tracy Gould, who has just started year 11, says the politicians who are in a position to make changes need to better understand what it’s like for the New Zealanders living in Australia with a disability.

“They have no idea how exhausting it is to live with a chronic illness already, and we don’t need to have to struggle with this because it makes it even harder.”