A 12-year-old from the Philippines who has been banned from moving to New Zealand due to her autism - despite both her parents already having residency - has garnered the attention of a high-profile disability rights activist and an MP outspoken on immigration issues.

Now, with their help, thousands of people are asking that the decision be overturned.

For half of her life, Arianna Alfonzo has lived roughly 7800km away from her father, a construction industry worker in Auckland.

"It's been very difficult for us," said her mother, Gail Alfonzo, who has stayed with Arianna overseas to look after her. "She needs both parents."

Arianna was denied a visitor visa in 2018 after she was deemed not to have met the "acceptable standards of health", an immigration policy that considers whether a person would cost the nation's special education or healthcare systems more than $41,000.

With the help of Green Party MP Ricardo Menéndez March, the family sought a reprieve late last year from Associate Immigration Minister Phil Twyford. There have been other cases in which families with autistic children have been initially denied a visa but later granted an exception, Menéndez March noted to his Parliament colleague in the November 16 letter.

"It should not take media attention to get the correct and just outcome," he wrote.

Twyford's office responded last month with a four-sentence letter.

"I have carefully considered your representations," Twyford wrote. "I advise I am not prepared to intervene in this case."

The Herald approached Twyford's office for comment. A spokesperson for the associate minister said he would not discuss individual cases.

Two cases, similar fights

Twyford's response to the exception request incensed Juliana Carvalho, who underwent her own years-long battle to gain residency after she was initially rejected on similar grounds.

"I wonder what level of preparation it takes to hold a pen and sign a paper," she wrote on her Change.org petition on behalf of the Alfonzo family, which is titled #LetAriannaStayNZ. "I wonder what kind of preparation is required to stop breaching this child's basic human rights. I wonder what kind of preparation he needs to have some empathy for this family."

Carvalho, who has lupus and is paraplegic, moved to New Zealand from Brazil on a student visa in 2012 after visiting siblings who had already immigrated. She "fell in love" with the country, she previously said. But in 2015, after applying for residency, she was found not to meet the acceptable standards of health clause and was rejected.

It took five years of appeals before a request for ministerial intervention in 2020 resulted in her receiving residency.

She described the "emotional toll of trying to prove that you add value" as "the worst thing that happened to my life" - a huge hit on her self-esteem even though she's had steady employment, plays wheelchair rugby, drives her own car and does not receive any regular personal care.

"Being told repeatedly that you are a burden, that you add no value - it can make you believe," she said. "I don't want anyone else to go through this. I don't want anyone else to feel the pain that I felt, the humiliation.

"This policy, it ruins people's lives."

Disability rights advocate Juliana Carvalho won a years-long battle to stay in New Zealand. She has now taken up the case of 12-year-old Arianna Alfonzo. Photo / Jason Oxenham

Carvalho befriended the Alfonzo family, and later became their vocal advocate, after Arianna's mum read about Carvalho's campaign for residency and reached out to her online.

"I think they deserve a break, really," Carvalho said. "We don't have any other option for this family. We have to keep fighting until the minister gets a bloody pen and signs the paper."

Strengths-based approach

But the Alfonzos are far from the only family who have faced a similar situation, Carvalho said, arguing that the entire system needs reform.

The #LetAriannaStayNZ petition, which has garnered over 2150 signatures so far, comes on the heels of a nearly 35,000-signature petition that Carvalho submitted to Parliament last year.

In it, Carvalho asked the Government to "end systemic discrimination in the immigration systems by complying with the [United Nations] Convention on the Rights of Persons with Disabilities", which she noted New Zealand signed 14 years ago.

"She wants immigration policy to be considered within a wellbeing framework, centred on the lived experiences of immigrants with disabilities, and informed by manaaki (hospitality), utu (mutuality), and aroha (love)," the bipartisan Education Workforce Committee said of the petition in a report published in December.

"She wants visa applicants to be assessed according to their contributions to society, skills, and family ties, and not according to their potential costs to health and education services."

The report noted that the Ministry of Business, Innovation and Employment, which oversees Immigration NZ, believes the current health settings are appropriate. The ministry highlighted renal and residential care as examples of services that are already under pressure.

Parents Gail and Allan Alfonzo are both New Zealand residents, but their daughter Arianna, 12, was not granted a visa due to potential costs to the system associated with her autism. Photo / Supplied

The Immigration and Protection Tribunal has recently decided that the UN disability rights convention "does not impose a mandatory requirement" to grant residence to those with impairments "which may hinder their full and effective participation in society on an equal basis with others".

But the committee report also noted that the Office of Disability Issues described linking disability to monetary cost as a "deficit-based approach" that is inconsistent with the New Zealand Disability Strategy. Rejecting a child's visa application while accepting other family members' creates an unenviable situation, the agency suggested.

The committee, chaired by Labour MP Marja Lubeck, concluded that there may be merit in some of Carvalho's proposals.

"We recommend that the acceptable standard of health, which is used by Immigration New Zealand to inform their decision-making on applications, is reviewed so that the health requirements will be aligned to a strengths-based approach for disabilities and only screen for the most serious health conditions," it suggested, thanking Carvalho for her advocacy and her "deeply personal" submissions.

The Government took a different approach.

New threshold, same system

Immigration matters, the Government noted last month in its response to Carvalho's petition, are "inherently discriminatory as individuals will need to be treated based on personal characteristics".

While the Government values the contributions of disabled people to New Zealand society, the current immigration health settings are appropriate because they focus on public health impacts, the four-page response noted.

"The Government considers that it is necessary to retain these settings to ensure that we do not significantly impact New Zealanders in the long-term."

The Government conceded that the current $41,000 limit for potential burdens on the system caused by an applicant's medical conditions could use a reassessment.

"The review is likely to find that the $41,000 threshold, which was set 10 years ago, no longer reflects what a high-cost medical condition currently looks like," the response noted, adding that the review would be unlikely to "significantly change screening requirements".

"Some conditions will likely always remain an impediment to being found to have an acceptable standard of health because of their cost and/or demand on limited resources, e.g. the need for cochlear implants, students requiring Ongoing Resource Scheme funding, conditions which require care in the community/residential care, and medical conditions requiring treatment with high-cost medications."

MP Ricardo Menéndez March, the Green Party's immigration spokesman, has also spoken out in support of the Alfonzo family. Photo / Sylvie Whinray

It's not enough, argued Menéndez March, who serves as the Green Party's immigration spokesman. The whole policy needs an overhaul, starting with adopting the approach recommended by the cross-party Education Workforce Committee, he told the Herald while discussing the Alfonzo family's case.

"We've been very clear that this policy borders on modern-day eugenics," he said, adding that disabled immigrants shouldn't have to seek help from MPs or the media to justify their value to society. "It's a deeply dehumanising process."

While he said he shouldn't have to fight for individual cases at all, he's surprised an exception hasn't been made for Arianna.

"We're not giving up," he said. "I hope that the minister sees the amazing potential of bringing this family together."

'A complete family'

Gail Alfonzo agreed.

Despite spending thousands of dollars on lawyer's fees and specialist doctor reports, she and her husband still believe in the compassion of New Zealanders, she told the Herald in a video call from the Philippines.

Arianna Alfonzo, aged 12, has been barred from moving to New Zealand due to her autism. Photo / Supplied

She described New Zealand as a "family country", which has benefited from her husband's hard work for six years and could benefit from her contributions to the economy as well.

Her daughter, she said, is her "blessing" whose bright smile leaves an impression on everyone.

"Arianna is a happy child like any other child in the world, she loves to go to school, meet people and see different places," Gail Alfonzo wrote on the petition. "Like any other child, Arianna deserves to live with dignity and be treated fairly.

"Arianna deserved to have a complete and happy family."