Perth-based NZ family feeling the pain after daughter denied funding help

The family of a young New Zealander living in Australia says being denied access to disability services funding has left them being treated “like people from a third world country”.

In 2010, Emma de Tracy Gould and her family moved from Nelson to Swan Valley, north of Perth, to take advantage of job opportunities for her father Dan and favourable weather conditions to manage her congenital heart condition.

In May 2018, the 17-year-old was diagnosed with Ehlers Danlos Syndrome Type 3 Hypermobile, a rare genetic condition caused by defects in the collagen protein. 

Symptoms include joint hypermobility,  soft skin that stretches and bruises easily as well as chronic musculoskeletal pain. 

In any given week, Emma will have multiple dislocations of her hips and left shoulder.

Requiring up to 15 hours sleep a day due to the chronic fatigue associated with the condition, the Year 11 student can only attend school two mornings a week.

Since December 2018, Emma has had to use a wheelchair to move more than short distances.

However, the borrowed wheelchair is the wrong size and puts additional strain on her already-fragile joints.

While Emma was able to attend therapy and doctor’s appointments, a majority of the costs must be met by the family, due to their status as New Zealanders living in Australia.  

Australia’s National Disability Insurance Scheme (NDIS) and state-wide equivalent (WANDIS) provides support for those with a significant and permanent disability, their families and carers. 

However, NDIS services are restricted to Australian citizens, permanent residents and Protected Special Category Visa-holders (PSCVs). 

Three days before her birthday in December last year, Emma was told in a letter from the Department of Communities that her condition was not permanent and that she would be up to full function in two years, therefore declining the WANDIS disability services application. 

“Emma may meet our eligibility criteria in the future if she is able to demonstrate that through participation in rehabilitation she is no longer able to make functional gains,” the letter said.

This was the family’s last hope, as Emma had been previously declined the NDIS on the basis she was not an Australian citizen.

“I’ve been told by multiple doctors that I will get better but it is a genetic condition,” she said.

“I can get stronger and it can help my joints stay in place, but ultimately, the more you use your joints the looser they get, so I have to work really hard to keep them strong.

“It’s hard work but it’s helped a lot – but you shouldn’t have to fight so hard for the help you need.”

As of February 2001, New Zealanders entering Australia are granted Special Category Visas,which means they don’t have the same rights and benefits as Australian citizens or permanent residents. 

They can only apply for permanent residency after five years. 

In contrast, all Australians who go to New Zealand are automatically granted residence visas and can apply for permanent residence after living there for two years.

A Gofundme page has been set up to raise money for a fit-for-purpose wheelchair and further awareness of Emma’s situation.

In the meantime, Emma was using her experiences to help other kids out, including being on a young person’s committee which assisted in formulating policy at the Perth Children’s Hospital for the last two years. 

Emma’s mother Michaela said the family had considered moving back to New Zealand in light of Emma’s situation, but after a decade had worked hard to establish themselves in Perth.

“We sort of feel in no man’s land really – it’s not really good enough when we pay as much tax as anyone and we can’t access that.”

The family has taken their concerns to their local MP and New Zealand Minister of Foreign Affairs Winston Peters.

In a letter to the family, Peters said  “the New Zealand Government has consistently advocated for comprehensive disability services for New Zealanders who have made their lives in Australia, on the basis that early intervention is in the interest of the Australian health system and in the long-term interest of the individual”.

It is thought 250,000 to 350,000 New Zealanders residing in Australia are denied access to the NDIS, despite being required to pay the NDIS levy. 

Advocacy group Oz Kiwi has campaigned for the fair treatment of New Zealanders living in Australia through a fair pathway to citizenship and equitable access to government services.

The lack of access to NDIS while having to pay the Medicare levy that funds frustrated many Kiwis and prompted Oz Kiwi to be established.

Spokeswoman Joanne Cox said it had been “incredibly difficult” to get anywhere with the current Australian government and after lobbying since April 2013 had “zero traction on this issue”. 

Speaking to TVNZ last year, Australia’s Social Services Minister Paul Fletcher said the Liberal National Government had no plans to change the eligibility requirements for the NDIS that were put in place by Labor in 2013.

Then-Labor leader Bill Shorten indicated that the party planned to review New Zealanders’ rights in Australia if in power.