“What happened is unusual, and for unusual things, there should be unusual rules.”

Hisham al Zarzour survived the Christchurch massacre in March, when 51 people were killed by a gunman who entered two mosques during Friday prayers and opened fire. But his struggle isn’t over.

Nearly nine months on, he is among victims of the attack who are calling for a new approach and more understanding from the government, which has promised long-term support but has not always delivered what survivors say they need.

“They can’t deal with unusual things in normal ways,” he says.

Al Zarzour, 33, sits in bright sunlight outside his Christchurch home, his three children shrieking happily as they play around him. In April, he was too nervous to leave his house for the physiotherapy appointments needed to recover from bullet wounds sustained to his leg when he was shot by the gunman in Al Noor mosque. Sometimes he slept on the floor, afraid he might be shot through the window.

He had lived in New Zealand for seven months before the gunman stormed two mosques in the South Island city. The Syrian man was one of dozens who were injured, and suffered a heart attack in the weeks after the shootings. Since then, things have improved in fits and starts: he now sleeps for brief spells every night, waking up two or three times with nightmares – months earlier, he would sometimes go two days at a time without rest.

“My personality is changed now,” he says. “I get angry quickly, and I’m not social like before.”

According to a Christchurch-based organisation that has conducted about 100 recent meetings with victims of the attacks, the bereaved and survivors still face a litany of problems: financial stress from closed businesses and terminated incomes – many of those killed were the breadwinners in their families – life-long physical injuries and mental trauma. Some are still wrestling with New Zealand’s immigration agency, or confronting a lack of cultural understanding from officials designated to work with them.

Raf Manji is a former Christchurch city councillor who is now advising the Christchurch Foundation, the independent charity that carried out the recent interviews. After more than 160 conversations, Manji said it was clear how much support the community still needed, and how much trust needed to be rebuilt after missteps and misunderstandings following the attacks.

He has recommended New Zealand’s government consider a “flexible, bespoke” system of financial support system that runs for at least two years after the shooting, more information-sharing between government agencies, culturally competent support workers, and a long-term mental health and trauma hub – as was established in response to the 2017 Manchester Arena bombing.

“Government agencies were told to be flexible, and they certainly were in the frontline strategy,” he said, of the numerous departments – including health, social welfare, compensation, and immigration – that had to work together to meet survivors’ needs following the attack. But, he added, they had eventually “hit walls” in terms of how much help they could provide.

Raf Manji is a former Christchurch city councillor Photograph: Raf Manji

“One thing I often heard … is that they don’t want to set a precedent.”

“The precedent has been set by the mere fact that we have had a mass casualty terror attack. You will not get a bigger precedent than that,” Manji says.

Megan Woods, the minister responsible for the government’s response to the attacks, said in an emailed statement: “This attack was unlike any other in the history of our country, and providing appropriate support for the victims is a complex task but one that it is vital we get right.”

She cited the “dedicated and personalised case managers” each family had been assigned, and added that it was important to balance information-sharing requests between government agencies with “respecting the privacy of victims and their families”.

Megan Woods Photograph: Elias Rodriguez/Getty Images

‘There has to be integration’

The government faced extraordinary challenges in responding to the attacks, partly because not all of the community had integrated into New Zealand life, and many did not understand how systems worked, said Zhiyan Basharati, an advocate for the victims in Christchurch who has worked with dozens of victims’ families to raise their complaints with officials.

Sometimes translators provided at meetings did not understand government systems either.

“If we’re going to bring people into the country, we need to make sure that they are integrating, that they feel safe, that there is no fear,” said Basharati, whose family settled in New Zealand as Kurdish refugees in 2001. “And to achieve that outcome, there has to be integration.”

Woods agreed in her statement that “issues around assimilation and integration have come to the fore for the community in the months after the attacks”.

The Christchurch Foundation’s interviews with members of the community came as the organisation prepared to distribute NZ$9m donated from around the world since March; Manji wanted the community’s advice on what to do with the funds.

Such questions have proved fraught. Many victims said an earlier round of more than NZ$10m raised by New Zealand charity Victim Support was disbursed without consulting them. Basharati, the community advocate, said the agency and other bodies had relied too much on the same handful of local community leaders, and the conversations had not filtered down to those most affected.

“Some individuals who are part of the boards, some of them have never seen the faces of the victims. They’ve never spoken to them,” she said. “You go individually, you speak to them, you go to their house, you give them respect individually.”

Some community members criticised a decision to exclude those present at the mosques – but who were not shot – from most of the earlier funding. Others decried the ruling that those with severe, life-changing injuries – a woman paralysed, a man who might lose his hand – were given the same amounts as those with less serious wounds.

The Christchurch Foundation plans, after the conversations with victims, to make payouts to the bereaved families and those shot in the attacks, and to set aside extra funding for the medical costs of those most seriously injured. Other tranches of money are set aside for children’s education, hardship, and community initiatives.

Some of the most severely injured were still recovering in hospital when the first round of funding was distributed, and their voices were absent from the conversations, said Basharati.

In one case, a 25-year-old woman who was paralysed in the attack had been discharged from the hospital to a property that did not accommodate her needs, and had to be driven across the city every time she needed to shower.

The government’s housing agency had been in the process of making modifications to a home for the woman and her husband to move into, but Basharati said she had visited the property and found it was in “revolting” condition.

Manji said when Basharati told him the situation, he helped arrange for the woman’s compensation to be released to her early, and assembled a team of people – including a lawyer who spoke the woman’s first language, and representatives of a local bank – so the woman and her husband could put down a deposit on their own home.

‘This will cost a lot of money’

New Zealand’s Prime Minister Jacinda Ardern after Friday prayers at Hagley Park outside Al-Noor mosque in Christchurch in the days after the massacre Photograph: Jorge Silva/Reuters

Talking to survivors from month to month reveals the volatile nature of their situations, and the starkly different challenges each family faces. Al Zarzour’s parents and brother have arrived in New Zealand to help him and his wife and children, and are likely to be able to stay long term, providing the government approves visas for them.

The presence of his relatives had been comforting and helpful, he said, but “more responsibility” too; once their visas are processed, he must help them find jobs and a place to live.

“They are my family, and it is my responsibility to find for them a house to rent and buy a car and then to buy the things in the house,” says al Zarzour, who survived after the shootings on donated grocery vouchers. “This will cost a lot of money.”

His landlord has told him he must vacate his rental home by April, so he must also find a new house for his family of five. He is barred from his previous work as a plasterer due to his injury and is retraining to be a social worker.

The worst thing for many survivors is the uncertainty; some who are likely to be among the most severely affected do not yet know the outcomes of their medical situations.

“We need to think about people who have bullet particles in their body, because if that bullet particle shifts, they could need emergency surgery,” says Basharati, who believes more work should be done to track the victims and their needs. “I mean, I get that this is the first time New Zealand has been going through something like this. But we’re not idiots.”

One of those whose future is in limbo is Ahmed Jahangir, the chairman of Linwood mosque – the second the gunman attacked – who is a good-humoured man with his arm in a sling and big dimples when he smiles.

Jahangir, who was shot in the shoulder and has lost the use of his right hand, will not know for another year whether more treatment might help.

For now, someone else is running the Indian restaurant that was his pride and joy.He is full of praise for how government officials dealt with his case, but his future, and that of his young family and his business, are up in the air.

“As of now, I haven’t planned anything for the next year after this,” he says. “I’m just taking it as it comes. No certainty yet.”