“I am so sorry.”

They are the words of Shizleen Aishath on the day of our planned interview. Waking up with a cold and headache, she decides it is best not to meet in person. Working around the situation, the interview takes place while she is driving home from the pharmacy.

Although she is feeling ill, it is impossible to tell through the warmth of her voice. Yet someone who knows Aishath’s recent past might suspect she knows how to put on a brave face in difficult circumstances. 

In a seemingly endless cycle of uncertainty, her family is facing an uncertain future due to the medical conditions of one of her sons: four year old Kayban Jamshaad. Born in Bunbury, Kayban has severe haemophilia, a condition which affects blood clotting, as well as a brain injury acquired at birth. As a result, he requires round the clock care. 

For other families, this might be the end of the story. For the Jamshaads, Kayban’s conditions leave them with a cloud over their future in Australia. 

Originally from the Maldives, the family moves to Bunbury when Aishath received a scholarship to study social work at Edith Cowan University’s South West campus. Arriving in Australia on a temporary visa, staying long term was originally something the Jamshaad family was not considering. This all changes at Kayban’s birth. 

Despite doctors predicting he will not survive, Kayban proves them wrong. As they start coming to terms with the reality of their son’s medical needs, Aishath and her husband Ahmed Jamshaad also start discussing the family’s future.

“Obviously having lived back home for all my life, I know how the health system works and what it is,” Aishath says, referring to the level of care available in the Maldives.

“When we crossed that bridge and he did survive and he was quite adamant on proving everyone wrong, I remember sitting there and saying to my husband “We can’t go home, can we? We can’t take him home, that’s not an option for us. What do we do?”

What happens next is a series of bureaucratic hurdles. Knowing the potential consequences of Kayban’s condition, the family starts looking at ways to ensure they can stay in Australia. Aishath drops from full time to part time studying to extend the time on her student visa. At around the same time, the family begins appealing the visa requirement to leave Australia once Aishath finishes her studies.   

Following the successful appeal, the family applies for a graduate visa. Eighteen months into the application process they realise the visa does not allow appeals for rejections, meaning they would have no choice but to leave Australia if an adverse ruling is made. The family switches to a sponsored visa and in December 2018 their application is accepted. Except for Kayban’s.

The Department of Home Affairs determines Kayban’s medical costs to be over the $49,000 threshold acceptable for the entirety of the visa, despite the family having private health insurance and paying all out of pocket expenses. In addition, the department rejects a health waiver on compassionate grounds. This is despite letters from Kayban’s doctors warning he could die prematurely if he is sent to the Maldives.

What follows is 14 months of limbo. The family challenges Home Affairs’ decision in the Administrative Appeals Tribunal and begins making representations to then Immigration Minister David Coleman for a ministerial intervention. The family starts a change.org petition which reaches nearly 24,000 signatures. 

Bunbury MLA and recently appointed Disability Services Minister Don Punch becomes one of the biggest advocates for the family, speaking about Kayban’s story in state parliament and making representations to federal colleagues. He describes Kayban’s treatment as unempathetic.  

“This was a very young boy, born in Australia, injured in the birthing process and his family were granted visas and he was not on medical grounds. That simply offends people with the irrationality of the decision making process,” he says.

It takes the tribunal five months to make a final decision on Kayban’s visa. During this time, Aishath and her family is living “every moment” on edge.

“Not knowing whether I need to pack or whether we get to stay, that’s the level of uncertainty we were in.”

In January 2020, she receives a phone call at work. The tribunal is rejecting Home Affairs’ decision, granting Kayban a two year visa. She starts crying.

“I remember turning around and I said ‘I’m going home, goodbye!’ That’s how professional I was about it,” she says, bursting into laughter.

“There was not a dry eye in the office that day but I just wanted to be with my family so I came home.”

It is just after 8pm on a quiet Saturday night in Bunbury. The day’s miserably overcast weather precipitates into a cool, jumper-suitable evening. On the other end of a video call is a young man in his early 20s. He has pale white skin with freckles and stylishly-cut ginger hair, which are both accentuated by the light from a large, six glass paned window into the living room. It is just after 1pm on a clear-skyed, sunny afternoon in Dungarven, Ireland.

Speaking with a noticeable yet still very understandable accent, a person unfamiliar with Sean Colgan’s story would never suspect he spent most of his teenage years living more than 15,000 kilometres away. 

“I loved it straight away,” he says, talking about moving to Bunbury at age 11. “I was so happy to be going over there and meeting new people.”

Yet Colgan is not back in Ireland by choice. He lives with cystic fibrosis, a genetic condition affecting the respiratory and digestive system. When the family moves to Australia on a sponsored visa in 2012, there is no problem with Colgan’s condition.

In late 2017, his father Keith applies for a bridging visa through his recruitment agency. However, they send him the wrong paperwork. As a result, the family applies for a visa not allowing a health appeal. 

Following the mistake, authorities tell the family to let their current visa run out before applying for a new one. Before leaving Australia, the family meets with an Administrative Appeals Tribunal member to see if another solution is possible, but hears bad news.

“If she could appeal it with the visa we were on, she would have. But she didn’t have the power to appeal it with the visa we were on.” 

On his departure in June 2019, Colgan leaves behind a girlfriend, many childhood friends and TAFE training he hopes will help him achieve his dream of being a personal trainer. Despite his cystic fibrosis diagnosis, doctors tell Colgan he has better lungs than most people his age.

“I got to say goodbye but it wasn’t a goodbye that I was leaving. It was kind of like ‘Oh, we’re going back for four weeks while waiting on this visa’,” he explains.

“The immigration lawyers were so optimistic that we would get the visa because of how long my dad was working in Australia. We were paying tax. We were only on private health insurance, so it was looking good.”

Once back in Ireland, Colgan learns he will not be allowed to return to Australia due to excessive health costs. His family suspects this is due to Colgan taking the prescription drug Orkambi. Although the life-extending medication is heavily subsidised by the Irish Government, a year’s supply without a subsidy costs $250,000. His family insist Ireland would continue subsidising the drug if he returns to Australia.

With his sister Sarah needing to go back to Australia for her tertiary education and the family still paying off the mortgage on their Bunbury home, the family decides to split their application.

Colgan and his mother Gillian’s visa applications are rejected. Sarah and Keith, a chef at Bunbury’s Highway Hotel, head back to Australia within a few weeks of their original departure. Colgan has not seen his father or sister in person since. Colgan and Gillian apply for a new visa to go back to Australia and are rejected again on health grounds. They appeal, though immigration authorities find another way to block the visa application.

“They said that I wouldn’t fit into the community of Bunbury. So that was a shock, even now. I did all my schooling there and knew everyone.”

The stories of the Jamshaad and Colgan families are not isolated incidents. Dr Jan Gothard is the health and disability specialist at Estrin Saul Lawyers and assisted both families. She is contacted by around two to three families each week, though many choose not to proceed with legal action due to the limited chance of success. She says the impacts of failing the health requirement can be devastating.

“You might have a child with a disability who’s perfectly healthy and you come up against the health requirement and you think “Well we’ve got no problems, we’re a really healthy family” and then all of a sudden you fail on the basis of the health requirement.

Gothard says the current requirements do not take individual circumstances into consideration.

“They simply look at what the cost would be for an Australian citizen or permanent resident who were ineligible for all the disability services that were going.

“If you have a feeling your child is not going to be a burden to the community, your child’s got the capacity to earn money, to work, to live independently, all those things are not taken into account.”

She is happy the health requirement is less stringent than it has been in the past – previously costs could not exceed $40,000 over a lifetime – but says it is still a strict standard.

“It is a lot less than an Australian citizen or permanent resident without a particular health condition would probably use. It’s not a very high threshold.”

A spokesperson for the Department of Home Affairs denies the current health requirements for non-citizens are unfair, saying it is pragmatic and balances compassion with costs to Australian taxpayers.

“The migration health requirement is not condition-specific and the assessment is undertaken individually for each applicant based on their condition and level of severity.

“It is an objective assessment to determine whether the care of the individual during their stay in Australia would likely result in significant costs to the Australian community or prejudice the access of Australian citizens and permanent residents to services.”

Data provided by the department shows 99 per cent of immigrants met the federal government’s health requirements last financial year. However, about half of the 1,300 people who did not meet the requirement were forced to leave Australia automatically due to their visas not allowing appeals. More than 90 per cent of the remaining half with visas allowing appeals received an exemption, though about 45 per cent of those exemptions were granted automatically on humanitarian grounds.

Both Immigration Minister Alex Hawke and local Federal MP Nola Marino did not respond to requests for comment. 

For Shizleen Aishath, she is already worried about what might happen when Kayban and the family applies for permanent residency at the end of next year.

“The arguments immigration would put against us in terms of cost, because then he is technically eligible for Medicare, that’s what worries me the most. 

“It won’t be a fair fight, I guess that’s how I look at it.” 

As for Sean Colgan, he is moving on with his life. After two years of separation, his family is deciding to close the Australian chapter of their life. They are putting their Bunbury home up for sale, with his father expected to return to Ireland sometime in the next few months. His sister will be staying in Australia to complete her economics degree. Colgan himself is still pursuing the dream.

“I’m looking at going back to doing college work in PT, just to get my European qualifications, in Dublin. Hopefully COVID settles down for that but I should be starting around September, so that will be good.”

His experience might be a bitter pill, but much like a headache or a cold his annoyance comes and goes. He is not dwelling on it.

“It is what it is.”